Chris Alt Delete

Grateful...

2012-01-22T20:26:00.005-08:00

Just wanted to check in and say hey... I'm really happy to say, things are going pretty well right now. Like I mentioned before, the Florida sunshine is definitely been so nice, a blessing that I don't take for granted. The weather down here has been perfect everyday, mid to high 70's and sunny. Hoping it stays like this for the rest of the winter...

I've been feeling pretty well overall except for these lingering headaches. They're mostly in the base of my skull and in my neck but sometimes feel it in my temples. I think it's another side effect from the RAD or Everolimus. I think I've had pretty much every side effect from this drug but thankfully never all at once! I finally got the welts I was getting on my face neck and back under control with some good Neutrogena acne wash and lotion plus prescription clindamycin.

Now that I have that documented, I can talk about some of the interesting things going on down here.

Today I went to my buddy Ivan's one year memorial at Tradewinds park down near Ft. Lauderdale. Ivan's sister Sylvia put it on and did a great job. Everyone there was really cool and down to earth, pretty much how Ivan was. I don't know why I didn't know this but he actually passed away last year at this same park on the disc golf course. Ivan had a bad heart and would always talk about his inevitability and with my situation, not to mention him being a great guy, I felt a bond with the dude. Anyway, in the spirit of Ivan being a huge disc golf enthusiast, everyone at the memorial picnic went to "Ivanhole" which the park generously named after him. We all gathered in a circle and this gal who was a friend of Ivan's said a beautiful prayer to "the creator" and other people took turns after saying something about him. Then, we all took turns firing off drives, some good, some not so good but it was fun and pretty funny when one of the guys who was a little intoxicated sent his disc into the lake. All in all, a really good day.

Other than working on this place and getting out here and there, I've been pretty content just hitting the beach almost everyday and walking in the sand barefoot. There's a less populated, private side of the beach and I kinda like it sometimes when you have the whole thing to yourself (almost). It's pretty neat seeing how the ocean changes, clarity, waves, tides, tons of washed up jellyfish and Portuguese Man of War one day, millions of tiny shells washed up in stripes on the sand... The ocean is so incredibly relaxing, I think it's by far the best place to meditate and chill out. You can actually breathe to the waves crashing, being one with it... Still can't believe I have access to this whenever I want, I'm pretty blessed.

On a less cerebral note, Atlantic Ave has been really fun too! This last Thursday, I went to my first "Jazz on the Ave" and was impressed. I think they have it in season on the third Thursday of each month. The whole strip is closed down and people walk in the streets, there's live music everywhere, great food and everyone's in a great mood. Maybe that's why things seem so happy down here this time of year, I mean a good majority of the people down here are on vacation! You want to have fun on vacation right?

By the way, I really think the economy is starting to pick up. South Florida was and still is hit pretty hard by the Great Recession but I've noticed a lot of signs that things are turning around. One obvious sign is all of the construction projects that have either resumed or are brand new. I'm not just talking about house here or there but major multi use construction projects downtown (condo's) and out West they're building huge housing developments. I've also noticed that there are several new small businesses that have opened up, restaurants, bars, shops, etc... It's nice to see.

You can start to feel the campaign heating up here with the tv ads lately. So far, I've only seen Mitt Romney ads (I swear, I think that guy is a humanoid) and you can tell how the momentum of his campaign has shifted. Last week, all of the ads were "presidential" touting his business background, 42 year marriage, etc, running a state, etc. This is when he was feeling pretty good about things after New Hampshire and polls looking good in South Carolina. Then, all of the sudden Newt Gingrich comes out of nowhere and pummels Romney. Almost immediately, the "presidential" ads switched to nasty attack ads on Gingrich. And, now that the conservative majority in the Supreme Court allows super PACS where an unlimited amount of money can be spent by any corporation, just as long as they're "not connected" to the campaign, give me a break! So, with this, now more than at anytime before I would think, it's who has the most money or who has the wealthiest friends. It's going to be interesting to see how the country turns, I'm fascinated by this stuff...

Well, that's all I've got for the moment, good to put up another entry although I wish I had more to say... It's back to the cold weather tomorrow to check in with my family and check in with Dr. Ram on Wednesday for my required blood draw and clinic.

Bracing myself for the shock, yikes!

Cheers,

Chris

Change of Scenery

2012-01-08T22:08:00.003-08:00

So, just wanted to check in and say life is good at the moment. I've managed to overcome a personal setback and enjoying every second of being back down in Florida. The weather has been absolutely perfect and have been getting to the beach every day. My place is really starting to come along as I now have fresh paint on most of the lower level. Something about a fresh coat of paint, kinda makes everything feel new, by far the cheapest way to spruce up a dingy place!

I'm also glad to say that I've been feeling so much better this last week. My back has healed after popping it again and I seem to have more energy. I am now convinced of the importance of sun for my energy level and general mood. The difference in the way I feel now after being exposed to the sun for a few days here and last month where I barely saw it (both down here and in Michigan) is remarkable. I also think I have really minimal active disease right now if I have any active disease at all. I never asked for the results of my last CT scan but bet that the nodes they've been following are pretty small. These two factors are making me a pretty happy camper right now I must say ;)

So, besides working on my place down here, my other full time job is trying to gain some weight. I know it sounds weird but I really have to work to keep my weight up. I've been really conscious to try and start the day with a decent sized breakfast (to get a head start on my calorie/protein consumption) then trying to snack healthy and not missing any meals. I also bought some whey protein powder but bummed I forgot to bring it with me down here... I guess I can buy some more as I know I'm going to use it ;) Happy to say I've already gained a few pounds back and hoping for around 10 more which is going to be really tough, especially when this RAD001 wreaks havoc on my appetite...

I also wanted to talk about some internal voices lately that have me thinking more and more about an allogenic transplant. I don't want to think about it but it seems to keep coming up, first with Dr Ram and his reminding me that right now would be a desirable time to try it with such a low disease burden. I've also been reading about a lot of fellow Hodgers on the Refractory Hodgkins Facebook page which was (thankfully) started by a guy I met on my other Hodgkins board on Webmagic or Lymphoma.com, Lowell. I just can't come to grips right now with the thought of going through so much toxicity, essentially giving up another 6 months to a year, feeling like crap most of the time. And, all of that for a one in three chance (I think that may even be generous) of ridding the disease for good. Not to mention, the somewhat likely event that I'd develop some form of graft versus host disease where the cells that I'd be inheriting from a donor would start attacking my body/organs etc. in ways that are not fun. It would definitely mean having to take tons more drugs, put myself at risk for a fatal infection while my immune system regrows and really limit my choices of new clinical trials that may be coming out as most won't take volunteers who've had an allogenic transplant. Yet, as bad as all of that sounds, the chance at a cure and not having to hope new treatments keep coming out is strangely tempting, (I wish that didn't sound so pathetic but such are the options for a refractory Hodgkins person like myself). I've met some folks that have done it or are scheduled to do it (while still deciding) and I have a lot of respect for what they are trying to achieve. It truly takes a warrior to go through something like and allo transplant, especially with all of the other therapy you've gone through to get to that point. Most people have already gone through first line therapy, salvage therapy, and an auto transplant where you use your own cells. In my case, I've done two auto transplants, not to mention three clinical trials now so I just don't know if I could survive another Hiroshima if you will.

For now, I will just hope that what I'm doing keeps working. I will also be keeping an eye on the allo route, hoping that ship doesn't sail as it's always nice to have that in my back pocket.

I wish this stuff was a little easier ;)

Chris

BTW, thoughts and prayers requested for another Hodge warrior going through some hard time, Zach. He's been dealing with some really bad symptoms (coughing, itching, trouble breathing) and just found out his disease is progressing and had to stop his clinical trial. The problem is that like most people who've been fighting Hodgkins for any decent length of time, the availability of novel drugs that you haven't tried become less and less. I'm hoping that Dr. O or another wizard Oncologist can come up with something to help him kick the disease back a bit. I'm going to put a link to Zach and Erins caring bridge site if you'd like to lend some support. Thanks

Happy New Year!

2012-01-01T09:40:00.002-08:00

Well, the new year came in without much of a bang for me which is ok... Just ended up staying in and didn't mind a bit, I must be getting old, ha!

I just wanted to say that I'm really excited about this upcoming year as I think some big changes are on the horizon. I'm much more settled than I was this time last year and think I'm ready.

I'm also looking forward to a better year for my family, specifically Rich and my Mom. Thankfully, my Mom switched doctors and hope that she's going to get more competent care and this breast cancer recurrence is just another bump in the road.

I have so many things to be thankful for; I just want to get back to being content and happy as I think I lost my focus of living in the moment and enjoying it. When Rich and my Mom were diagnosed, everything kinda flashed in front of me again and it brought back a lot of bad memories. There aren't too many things that can rock your world as much as a cancer diagnosis, that's for sure.

2011 was difficult in losing so many friends. My old friend Lee McPherson who was diagnosed with brain cancer a week apart from my diagnosis, Kirsten out in Vancouver who I met while living in Seattle and most recently, Mike Reed who I kept in touch with through emails. Can't forget my cousin Rodney who was the best man at my parents' wedding... There are others who have touched my life like Andy Keely and Mike from St. Clair Shores who will also be missed. I know I'm forgetting some folks and wish my memory could serve me better right now...

All of these heroes inspire me to live the fullest life I can live. There are still so many things that I want to experience while I'm relatively healthy...

Here's to a great 2012 to you and your family!

Chris

Winding down 2011

2011-12-28T22:50:00.003-08:00

Well, Happy Holidays belatedly to you :) It was a weird one this year for me, hard to explain. I did the drive up from Florida on the 22nd and bam, Christmas was on. My Aunt Shelly and Uncle Butch put on a nice dinner and it was good to hang around the family for a bit on Christmas eve. My Moms was nice too on Christmas day. I kinda felt like a zombie on both days though... I recently switched up taking my pills from the evening to the morning and have been exhausted during the day lately. I wanted to try something different as before, when I took them at night, it was almost impossible for me to get up before 11-12 in the afternoon. I started getting a little freaked when the days started getting so short, I was only seeing daylight for 4-5 hours, not cool. So, the switching to the morning has resulted now in me being able to wake up earlier but being really tired during the day. So the new experiment is one in the morning and one at night. We'll see how it plays out.

As for my Mom, I got a bad phone call from her today. Apparently her doctor and her team dragged their feet in getting her tested for HER2 and when they did, they had a screw up on the spelling of her name or something idiotic... The end result is she didn't get an additional drug today (Herceptin) with her conventional chemo (4th infusion) that dramatically increases the efficacy of her treatment. This means apparently that she's going to have to get an additional 4 treatments. This is hard to believe and I'm at a loss as to what to say. Such an incredible appalling mistake. Why there's not a check and balance system there I have no clue. Good Lord. You can't buy back that time but the hope is that the Herceptin has great effect and all of this is just a bad memory.

Good time to change the subject I think...

Even though it's really cold here in Michigan, I had a pretty nice experience tonight at the park behind me where I let Chili fly around without her leash. We went out tonight for the first time in a while as the park got flooded with the warmer temperatures the last few days. Tonight was below freezing (30 degrees F) and the ground and the water froze. It was pretty neat walking on the frozen ground, kinda like a hard sponge and with the lights around the park, the frost on the ground was literally sparkling, quite beautiful.

I had a scary experience earlier today however... I think Chili has been getting a little cabin fever. I let her out earlier today but forgot to lock my gate and found later that she decided to take a stroll down the street on her own which she never does. It's always her standing at the front porch barking letting me know I left the gate open, no big deal. Today she scared me though because like I said, she never runs away and it was pretty damn cold out. My mind of course went to all of the worst scenarios and I was a little freaked. I had to run out and yell for her 8-10 times before she came running out of someones yard down the street. I need to make sure to lock the gate for now on, can't afford any more drama!

So, in the spirit of relaxing, I plan to do a good amount of it along with some early new years resolutions like going back to yoga (bought a $25 groupon for 25 sessions, not too shabby ;) I've also just changed the strings on my guitar to these nice Elixirs which were a Christmas present. Those things are buttery! Anyway, I'm thinking of taking a few lessons to try and learn some new skills. I've been stagnant in my playing for so long now... I want to learn how to play some slide or some bluegrass or something fun. I've got lots of other things I want to get into but going to wait to see how this fatigue thing plays out so as to know how much I can take on in addition to working on these two houses and my other projects.

I've also got to work on trying to put on some weight! Funny, most people are trying to lose weight after the holidays. It was a little scary getting on the scale yesterday and weighing under 16lbs. I won't say how much under except I need to get busy eating, don't like being this light. I feel fairly strong but don't like the way I look and how cold I get. I wish I had the cash for a personal chef, that'd be sweet! So, I've got to start forcing myself to eat more (I skipped a few meals down in Florida working my butt off on my place). I've also been dealing with these mouth sores which makes it pretty painful to eat. I think I also have to start eating some things I've been avoiding lately, trying to adhere to an anti inflammatory diet. Once I get back up to closer to 170, I can get on the healthy diet again and just work to maintain it.

I guess one of the advantages of having cancer is that I never have to worry about getting fat, haha ;)

So, I think I'm going to check out here, just realized it's almost 3:00 in the morning, yikes. I took a long nap today, thus the long night I guess.

Starting to look forward to the new year and with it all of the great things that will hopefully happen in 2012.

Cheers!

Chris

BTW, RIP Mike Reed, I'm happy for you now that you're in a better place :)

Sad news...

2011-12-22T21:05:00.002-08:00

I just read that one of my heroes passed away tonight, Mike Reed. I really don't know what to say right now except that my heart goes out to April his wife and their beautiful child.

This sucks...

Re Connected

2011-12-13T23:14:00.006-08:00

Just a quick update... Been down in rainy but warm Florida and finally got hooked up with internet access and cable today. It was starting to get weird in here with nothing but my phone and Chili to entertain me! Been keeping busy working around the place and actually started painting tonight. I like this place so much better than the other, I think the fire was actually a blessing!

The Bucky Dent Baseball School is right behind where I live, Chili was bugging me to sign her up ;)

She said she wants to pitch!

Couldn't resist, I told you I was bored!

So, my Mom has started her treatment and is handling it ok so far except for some GI issues. I'm worried about my sister though as I guess she had a grand mal seizure yesterday that really shook everyone. I don't know if any of you have ever experienced someone having a really bad seizure but it's one of the scarier things you'll ever witness. My sister is really brave to have dealt with these awful things for so many years, I wish there was a way she could prevent them from happening... She's tried every drug out there and has gone through so many tests... There's got to be something out there for her, ugh...

I'm really hoping I can get this place together fast so I can have everyone down for a visit and some sunshine this winter. It's hard enough to get through one (Michigan winter) but you throw in all the crap my Mom, Rich and my sister are dealing with and I think they could use some R and R down here in South Florida :)

Hopefully the weather improves here in the next few days. It's been nice and warm but mostly been cloudy and rainy. I don't feel as bad sleeping a lot after doing the work (it wears me out still) not to mention being inside in general. With this drug I'm taking (RAD001) I don't feel as compelled to be in the sun as the skin on my face has been doing some strange things. I get these major boils on my neck and crazy blemishes on my face. I've also been dealing with these weird puffy patches of skin under my eyes with these little dots. I don't know, this drug is working to keep the disease away (at last check) but I wonder what other kind of havoc is it wreaking on my normal bodily functions...

I hope this blog hasn't become depressing to read by the way... I just realized that I haven't been very happy go lucky on here for quite a while. In fact, I think I've been in kind of a funk in general for a while. I think the my family's burdens are weighing on me and it's hard to go out and enjoy myself lately. I did get out this last Saturday and had a great time at a concert in West Boca, at the Sunset Cove Amphitheater. My Morning Jacket was the band and they were really good.

It was a full moon that night and it was shining just above the stage!

I think when the sun does decide to stay out a while here, and when we hopefully get some good news regarding my Mom's treatment working things are going to get better.

In the meantime, I have to remember that the meantime is the most important time and do my best to enjoy it! Not sure if you'll find that saying in any Buddhism books but you get my drift ;)

Thanks again for reading,

Chris

Seasons...

2011-12-04T23:10:00.003-08:00

I just got back from the Chris Cornell show at the Michigan Theater in Ann Arbor. It's been a while since I've seen a show that gave me goosebumps, the last being U2 late this summer... It was just him and 7 awesome sounding guitars, really something. I think this song is appropriate as it does seem the seasons keep rolling along, ho hum... Actually quite the opposite -- it is really nice to comment on how time is just rolling by, maybe even in a monotonous way which I never thought I'd be writing about since I was diagnosed now 4 years ago...

I was going through my closet the other day and came upon a plastic shopping bag with the following caption written in sharpie "Nov 17th, git er done!"... Inside the shopping bag is the hair that I decided to cut off myself before the chemo had a chance to take it from me. It was my way of telling the cancer who was in charge or something like that... For the moment, I had won a crucial battle even if it was only symbolic - I wasn't going to let the cancer control me even though little did I know that it sometimes would and still does to this day. When I mention battle (which by the way is the most appropriate way to describe dealing with cancer) I mean that sometimes you win and sometimes the cancer wins. On that day in West Seattle a little over four years ago, I managed to win that one small battle...

Today, the battle rages on of course. Both the cancer and I have been beaten bruised, both of us inflicting damage on each other and up to this point, I have to say I'm winning. Not just because I'm laying here writing this blog... Nope, it's the simple fact that I have the desire to write this blog. It's the fact that I can still go out and enjoy myself on a night like tonight and walk by people, speak to people and them having no idea what I've been through or still going through. To me, that's winning the battle.

Of course, I'm sure the cancer is getting ready for a counter assault and for that hopefully I'm ready. I need to call Baylor University tomorrow to find out what's going on with my genetically modified T-cells. The last I spoke to the trial coordinator, they were growing very slowly but growing nonetheless. For now though, I continue to roll with the RAD001 despite the chronic fatigue and this new side effect of mucositis (where did this come from?!). The good thing is it's not caused from the cancer but the weapon (RAD001) I'm using right now to keep the beast down. Not sure where all the battle talk etc. is coming from but it just seems natural to write about so I'm sticking to it! Funny, I used to write these entries and then go back to see if my thoughts are organized, etc. Now, I just tend to write whatever comes to mind and just put it out there. Maybe I'm just getting lazy... Maybe I just don't care how this looks or sounds as much as just putting a message out there.

Perhaps I'm writing this as I know my Mom is getting ready to start her regimen this week and I want to remind her she has it in her to do this (of course she does, she's done it before!). It was nice to get a phone call from her after she had a really painful procedure done (had a small organ removed with a needle, can't remember the name of it right now). Anyway, she told me that when she was getting it done, she was thinking of all the bone marrow biopsies I've had and how I was and am able to get through it and it helped her get through it. Pretty neat to inspire someone by the pain you've gone through, makes me feel better knowing that some good came out of it! (not to mention finding out every time my bone marrow is clean thank God...).

Well, that's pretty much all I've got for now. Been packing up and preparing the last couple days for another drive down to Florida. This time to drive my tools down there so I can continue my unofficial job of house fixer upper or something like that ;)

I almost forgot, that's my part time job. The full time job I'll continue to do whether I like it or not...

Cheers,

Chris

Time has flown...

2011-11-30T22:48:00.002-08:00

Wow, just realized it's been two weeks since I've updated, don't know where the time has gone...

Thanksgiving was nice as always. I was so looking forward to the Lions game and they laid the biggest egg, actually put me to sleep! Woke up and the food was ready to go and my Mom put together another epic meal. She's something else, with all she's dealing with right now with her pending treatment, pretty remarkable... She has her second opinion on Friday and should have enough information to get going with treatment next week. They're concerned with a suspicious spot on her lung along with of course the breast cancer. Prayers and good vibes requested please...

As for me, still rolling along. Finally got my feet taken care of! Come to think of it, I now realize that's probably the reason I haven't updated... After getting back from Florida, I probably did one of the dumbest things I've done in a while, trying to fix my ingrown toenails by performing torture on myself, lol. My toes and feet ended up getting infected and it was one of the more painful things I've had to deal with. My dogs were so sensitive I had a hard time sleeping with my toes touching the covers or dinging them on the mattress. Not to mention, my feet swelling up like balloons and pounding with every heartbeat. I ended up going to the podiatrist and Dr. Grodman yanked out three daggers that were growing into my skin. He had to numb both big toes Novocaine or whatever it is they give you at the dentist. While he was slicing out my toenails, he mentioned that I'd never be able to go as far as he went, way too painful... I couldn't look, I was having flashbacks of trying to do it myself, I'm getting creeped out by even writing about this. Happy to say the worst is over and I'm pain free down there, thank God!

Laying here watching the coverage of the Republican candidates, trying to see what the choice will be like next November. Of the two front runners, neither seems to exhibit a whole lot of principle or character, two of the most important attributes I think a leader should have. This is without mentioning the Cain guy...

Excited to be going to see Chris Cornell from one of my favorite bands of the 90's, Soundgarden, this Sunday at the Michigan Theater in Ann Arbor. It'll be my first time seeing the theater too so should be a fun night.

Really glad we're gonna have hoops this year btw, I like sports but I'm definitely a basketball junkie...

Alright, that's all I've got for now. Sorry if I grossed anyone out by talking about my toenail problem ;) It's one of those things I just had to document, lol. Hoping to settle into this thing with my Mom and looking forward to some sunshine as I prepare to drive my tools down to Florida to start working on the new digs down there.

Life is good!

Back in the D

2011-11-17T09:34:00.002-08:00

So, I landed yesterday morning uneventfully :) Went straight to Karmanos and was a little dismayed by what my doctor had to say. Yes, Dr. Ramchandran managed to pee in my cornflakes if you will... He had supposedly been holding out having this conversation with me but for whatever reason yesterday Dr. Ram was Debbie Downer and advised me that I might want to check with the Doc's there about looking into an Allogenic Stem Cell transplant. He said he doesn't envision these clinical trials working for me much longer and mentioned I'm on a "hot streak" and isn't overly confident that these trials will keep working for me, mwah mwah mwah.... It was pretty sobering news (as if I don't live with that thought every day) and made me question for a while if I was doing the right thing and maybe I should look into a donor... The funk lasted until I went to bed last night but woke today feeling better. I know that my chance for a cure most likely has passed (at least for what's available in Tx today) and quickly have gone back to survival mode and the mindset of treating this as a chronic disease. It's just that I haven't ever been given a "timetable" and Dr. Ram told me yesterday that he can't see me getting more than a couple years out of the way I'm going. Who wants to be told that?! I think these oncologists get antsy and feel like they need to do something... His rationale is that I'm either in remission or very close and right now may be the best time to try and eradicate the disease for good. It's funny though that when I asked him what he would do if he were me he couldn't answer saying he had kids, etc...

All I know is that while a cure would be great, getting an allo transplant is by no means a sure bet. Cure rates for Hodgkins are less than 20% with an allo and the chance I develop graft versus host disease is around 50%. To me, those numbers just don't add up not to mention the year of hell I'd have to go through after getting blasted again (losing all my hair, fingernails, feeling like crap, etc.).

So, now that I got that off my chest, I'm just going to continue to live in the moment, enjoy my relatively good health (minus the back pain and once I can get a handle on this fatigue and these damn in grown toe nails!). I'm going to ride the RAD001 train as long as it'll take me and hopefully when it stops working, my little genetically modified killer T-cells which are growing down in Houston will be ready to go and I can jump on that with the hope that I can continue to kill cancer cells in a relatively non-toxic kind of way.

I feel pretty strong physically and mentally (minus the hiccup yesterday).

Speaking of hiccups, the path for my Mom's treatment has hit a snag. Due to some incompetence by her team, they failed to state on a PET scan script that she was diagnosed with cancer and Health Alliance Plan (HAP) denied the test. After some prodding by me and some digging by my Mom, she found this out and it's been a scramble ever since to try and get approval for the scan so she can be properly staged and prescribed the right Tx. My aunt Deb who works at St. John health system asked around about her disease though and was told that it is highly curable so that was nice to hear. I just hope she can get started asap (once we gather all the information) because I know from experience the waiting can be the hardest part (Tom Petty says it best!).

As for Rich, it's been decided by his team that they do not need to give chemo and it's watch and wait which is good :)

Anyway, time to get my ducks back in a row here in chilly Michigan and reconnect with the outside world. Watched the news last night and shocking all the major stuff going on right now. I can feel a current events post coming up as it's hard to keep all of my thoughts on whats going on here in the U.S. and around the world inside!

At least if I go there, you know I'm not thinking about cancer which to me is a good thing :)

Taking it day by day, hour by hour, minute by minute, breath by breath...

Chris

Thanks to Panera Bread...

2011-11-14T13:27:00.002-08:00

I can finally update! I've been at my new place in Delray and haven't had internet or cable, totally disconnected except for my phone. It was pretty weird at first but have gotten used to it and hope to get connected the next time I come down.

To summarize my trip, it's been awesome! After the snowstorm in Pennsylvania, it has been truly memorable and sad it's coming to an end.

I had a chance to catch up with friends all the way down the coast who I haven't seen in a while along with everyone down here. The weather has been mostly great and today had a chance to hang out by the pool (after finally getting a key!)

So, without going into too much detail re the trip due to little time here at the restaurant, I'll have one more day tomorrow then it's back to the D early Wednesday morning where I fly up, land and go directly to see Dr. Ramchandran. My headaches have thankfully mostly gone away and now I'm just dealing with massive fatigue which hopefully he can help me with. I've got a weird rash under my eyes and near my mouth too which needs to be addressed as well but it's only cosmetic and sure there's some kind of cream or something I can get for it.

As for my family, Rich found out he won't need chemo or radiation but got some sad news that he's no longer eligible to be on the heart transplant list. I guess the only option is to make sure the remaining functioning part of his current heart gets stronger somehow. They're supposed to attach a new lead to his pacemaker so hopefully that helps. As for my Mom, she is getting a PET scan today after having to wait (stupid insurance company HAP, what are they thinking?!). She goes in tomorrow to consult with an oncologist who has extensive experience in recurrent breast cancer and hope she can give her some good options.

That's really all I have time for now, thanks again for reading and keeping up with me and as always for the prayers and good thoughts.

Chris

Great News! (relatively speaking)

2011-11-03T12:13:00.004-07:00

Just got a text from my Mom telling me that her pathology report came back negative for Lung Cancer!!!!! It's not all good news though as she still does have cancer as it's a recurrence of her breast cancer from 20 years ago that has metastasized. While the best news would be no cancer, at least the prognosis is much better (according to her thoracic surgeon).

So, while her and Rich are by no means "out of the woods", it looks as though they have a much better chance than we thought :)

Thanks for the good vibes and prayers.

Cautiously optimistic,

Chris :)

Halloween 2011, pretty memorable!

2011-11-01T11:58:00.008-07:00

Creepy costume shot on my way down to parade NYC 2011

So, I decided to go forward with my planned trip to New York and subsequent drive down the East Coast on my way to Florida. I was a little worried the trip might not have been the best idea in the beginning. I stayed up really late last Friday trying to get everything together so I could leave the next morning and be in New York at a reasonable time to go out with some friends. About halfway into the drive, I had serious doubts if this was going to happen. The mountains in Pennsylvania were really nice then all of the sudden, all hell broke loose. It started snowing a little at first then went into a full blown blizzard, trees were fallen over the highway, trucks and cars were sliding into ditches and then I started to slide around and decided it wasn't worth risking my life to get to New York on Saturday night. I bit the bullet gladly and found a Best Western in the middle of BFE Pennsylvania and have to say it was probably the smartest $100 I've ever spent. My little convertible is obviously not made for snow driving and not even sure if it's ever seen cold weather. So, not only was it sliding but the engine was bogging, couldn't see out of the windshield with no defroster, it was pretty scary...

At first, the snow was nice :)

Never a good thing when you're driving on the highway only to be staring at headlights facing you! I was going pretty slow though hence my chance to take the shot. This accident was my wakeup call to get off the road...

Getting to the hotel and being able to exhale was awesome! I was so exhausted, I think I passed out around 9:30-10 which never happens... It was nice waking up the next morning with the sun out, burning the snow off the road, and being able to drive on dry pavement. The rest of the drive then went pretty smoothly and it was pretty surreal coming out of the mountains of PA and New Jersey, seeing the city skyline and all of the sudden being back in the concrete jungle. I took the Holland Tunnel to New York and was shocked that it was $12 bucks. I think they raised the price because of the condition of the entry of the tunnel. It looks to be falling apart pretty bad, can't imagine how much it's going to cost to ever fix that thing up...

Once in New York, I was able to meet my friends and we went to a sports bar to watch the Lions kick some major ass. Can't remember the last time I was proud to root for the Lions in a different city, pretty cool!

The next day was Halloween and we decided to hit the parade. I actually took the train down to Houston St. and was going to meet my friends for dinner and purposely didn't eat because it was pizza and pasta and you need a lot of room to eat all those carbs. Little did I know that once I got out of the subway and onto the street how many people were going to be out and I almost didn't make it to the restaurant. They had the streets blocked off with barriers and weren't letting anyone cross 6th ave, ugh. So, if you can imagine the mouse in the maze trying to find the cheese, that was me ;) I went up and down side streets only to be turned away everytime trying to cross over. Finally, I looked up the street and noticed hoards of people crossing 6th and I ran as fast as I could to try and get across. I finally ended up in the middle of a mass of people who were watching the parade and realized I had to get into the "crossing fenced lane" and had to run all the way back and re-enter if that makes any sense. I finally did get across and it was such a major relief, I felt like I had won again, one guy against thousands of people in a city I'm not overly familiar with... that pizza tasted great! ;)

Contained craziness in the village

Creepy skeletons at the parade

The next day I went down to my little park and took this shot of the finally finished skyscraper that they were working on everyday last year which is located next door to the Hope Lodge bldg. So much quieter here :)

I wanted to wind this up by mentioning that while all of this is fun, exciting and adventurous, I do it with a heavy heart knowing that my family is going through some hard times right now and a fellow Hodge Warrior Mike Reed is struggling pretty bad in his fight. Please take a minute to check out his Caring Bridge site which you can find a link under my blogs lists and leave an encouraging message if you can. It's been one thing after another for the guy and my heart goes out to him and his family. Also, looking forward to digging into the trenches with my Mom when I get back to confront her beast and give it hell. I've got names of 5 doctors now who have been recommended to me from other doctors so we'll have some good options. Even though I'm out here, my heart is in Michigan with my family and always in my thoughts. Love you guys!

Chris

Rich Update

2011-10-27T22:34:00.003-07:00

Well, it was a long day for the family today but I'm happy to report Rich survived his surgery and they were able to remove the mass from his lung as well as some suspicious surrounding lung tissue. They also removed some lymph nodes and will be testing those to find out if they need to follow up with chemotherapy. The hope is that they won't have to because of the condition of his heart and the CHF. I think he has a few more days at UofM then he can hopefully go home. Ann Arbor is nice (especially right now with the colors changing) but as Dorothy said, there's no place like home...

As for my Mom, I think it's been a good distraction for her regarding her upcoming battle. Behind the scenes, I've been doing a good amount of research, getting names of doctors here in Michigan as well as researching some of the novel trials for small cell lung cancer. There are a couple of targeted therapies out there as well as the new class of drugs that actually starve the tumor, essentially cutting off it's food supply by preventing the necessary network of blood vessels that tumor cells need to survive and proliferate.

Don't get me wrong, this is going to be a tough fight. I think we have the best chance going at it agressively as possible right away. We'll know more after the PET scan and the pathology report results but don't think there's anything wrong with arming us with as much information as possible. Lung cancer is the number one killing cancer in the world I believe, you'd have to think there's got to be more experimental treatments out there. If there are, I will find them and my Mom will somehow have access to them. She and Rich are going to be with us for a long time if I can help it.

I welcome any input if you or any of your friends have any experience with this.

Thanks for reading once again :)

Chris

Struggling

2011-10-21T11:47:00.003-07:00

It's been a tough 36 hours. Just found out that my Mom most likely has lung cancer along with Rich, double whammy if you will. A positive about Rich's is that it's just an isolated spot that can be removed (God willing he gets through the surgery with his CHF) and hopefully the beast stays away. As for my Mom, unfortunately it looks like it's metastasized to her lymph nodes which isn't unusual to happen quickly. The doctor mentioned there is reasona for optimism which was good to hear. We will find out exactly what type it is when she has a biopsy hopefully next week. Rich's surgery is on the 27th at U of M and I know everything is going to go well. As for my Mom, she has already beaten breast cancer so I think she's chemosensitive not to mention she is a f'n warrior along with Rich. How often have you heard of a married couple having to go through lung cancer at the same time? I don't know why all of this is happening nor do I understand why my sister had to go through it with her brain cancer and I have to deal with my crap but it's life and you have to roll with it I guess. This is just another bump in the road (as if we need any more) and I know there's a purpose to it and we will all be stronger and closer because of it.

It's hard for me to think of any of my stuff anymore and I guess in some demented way it's a blessing and a curse if that makes any sense. Now I know how people who care about me felt when they found out I was sick. I'm comforted to know that while it was bad (and still is), you quickly adjust because you have no choice. You learn to accept the treatment and not feeling so great because you have to. One thing that gives me hope about my Mom and Rich is that they laugh a lot and don't take life too seriously. My mom and I were talking about this yesterday at the hospital and I've read books on it. It is great supplemental therapy! Also, because we have a split family, there's twice the support which is awesome!

I am going to stay positive about all of this because like I said, there has to be a purpose...

It's back to basics, one breath at a time.

Thanks for the support in advance,

Chris

Random Thoughts

2011-10-17T23:54:00.004-07:00

I don't really have any updates but just felt like writing a little to help me sleep... I still battle insomnia and know this to be a way to help me doze off into dreamland so here goes.

Where to begin though? I guess maybe I should start by saying that I'm still doing relatively well (for someone in my shoes) but it's a constant struggle. I probably have written about this before but I've just learned to accept all the little nagging things (some not so little) as I deal with the developing long term affects of my body taking such a pounding after going through all the toxic therapy. My back problems are well documented and I'm just recovering from a "pop" that occurred a couple weeks ago as I was moving stuff around in my garage. It pretty much put me down for 7-10 days and I couldn't do much of anything. It's much better now and have been testing it doing more stuff to the house and going to the Home Depot today grabbing some drywall and lumber (tip, don't try to load drywall on top of your car on a windy day!). Hopefully I can get out of bed tomorrow!

Another once small issue (in terms of size and pain) has developed into a full blown major issue (although still small in size) and that's my two big toes! Unbelievably, the inside bottom portion of the nail on both toes has become infected and making it almost impossible to wear shoes these days for more than a couple of hours. Crazy how something so small can be so painful! It's slowly been developing as the temps here in Michigan drop and I'm no longer able to wear flip flops like I've mostly been wearing the last couple of years. I have wide feet and now know that I have to be really conscious of the shoes I wear. Gone are the days where I can wear my Chuck Taylors or any shoe for that matter with a narrow toe. Ever since I dealt with the Guillaine Barre Syndrome from SGN-35, my feet have been messed up and often get swolllen if I'm on my feet for very long. I don't realize that they're swollen when I have my shoes on and the result is my toes being crammed in there and each step forcing the skin over the nail (at least that's my theory ;). Anyway, I'm now trying to figure out how to deal with these ingrown toenails and can tell you it's no picnic.

I've also been dealing with some more frequent headaches that I haven't had since chemo. The culprit while on chemo was not drinking enough water and I think the same holds true today (but don't remember having to drink so much to keep the headaches away). I think I'm writing this to document in addition to bitching and moaning to make myself feel better, haha. Anyway, something to keep my eye on after a couple of scares from the doc's in how Hodgkins can sometimes go into the brain albeit rare.

On a positive note, I think I'm going to do another sweet road trip here in a couple of weeks, this time on the East Coast. I've been invited to New York for Halloween and the crazy parade they have every year. So, the plan is to drive to New York, check out all the "freaks and icons" (actually borrowed that from an album title by Dzihan and Kamien which is a must have for your electronic/house/ambient collection), then drive south down the coast and eventually ending up in Delray Beach to leave my little car for the rest of the winter. I still have to work out the details or can perhaps just let the trip unfold on it's own as I connect with friends en route or am pulled by certain sites that I haven't experienced. I'm kinda leaning towards just going with the flow with a loose outline of things I want to see. Interesting to find out how it unfolds...

I think I'm ready for an adventure, it's been a while since I've done anything like this so I'm looking forward to it. Plus, I think the colors will still be changing as I head south so that should make for some nice driving. Hoping my 23 year old car with almost a half million miles on it continues to run like a champ. I recently had the brakes fixed along with major work earlier this summer to the transmission and other stuff so it should hopefully be ok. I should be extra careful documenting this trip, maybe BMW will be interested in my story, just saying... ;)

That's about all I've got in me for now. My spirits are mainly good except when I think about what my Mom and Rich are going through right now along with my Sister. Rich has his surgery now scheduled to remove a cancerous spot on his lung (despite his CHF) and my Mom should be finding out soon the results of her CT scan. Just found out today that my sister has been dealing with more frequent seizures, probably the result of the extra stress and the resulting change in body chemistry that most likely affects her body's response to the meds she takes to control them. If anybody could use some good news, it's those guys and I wish to God they could get some. I know first hand how toxic stress is to your body and well being. I'm hoping that all this bad stuff will be a bad memory one day and the worry over at my Mom and Rich's place will go away or at least be held to the background. No matter what, we're all pretty well battle tested so I'm confident that whatever happens, we'll be able to roll with it and come out on top, whatever that means. For now, prayers and positive energy is all we can do and will take either from whoever is reading this! I can see how prayer and faith is carrying my friends the Reeds as Mike continues his battle with MDS and Hodgkins and know that it can only help us so thanks in advance if you don't mind!

Ok, that's all for now, time to hopefully fall out of this conscious state into a blissful dream state :)

Thanks for reading, Chris

What the Heck...

2011-10-10T08:50:00.003-07:00

Just when I thought things couldn't get any worse in my family, I called my Mom today to find out the results of Rich's needle core biopsy and it's confirmed, Rich has lung cancer. While expected, it's still hard to hear and of course troubling. The big blow was still yet to come however... After we discussed Rich, my Mom told me she had an x-ray last week and she has inflamed lymph nodes in her chest which prompted the medical team to order a CT scan for this Thursday, ugh ugh ugh. I didn't know this but she's been really tired lately (symptom) and has developed a cough (symptom) which is rare for her. Kinda freaking out here but going to remain calm and deal with this like I deal with my own crap, the best I can.

I just don't understand why our family has to deal with so much... Seems very unfair.

Not sure what else to say...

Time to put my own troubles on the back burner and do my best to try and process all of this. Hopefully it'll be nothing and we can go back to dealing with just Rich's pending surgery and successful recovery.

Keeping the faith,

Chris

Quick Update

2011-09-28T10:54:00.002-07:00

Hello everyone,

It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!

I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D

So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.

Thanks again for all of your support and prayers, they're working!

Hope everyone has an awesome day and look forward to the next update.

Cheers!

Chris

Sad News

2011-09-19T22:10:00.003-07:00

I found out yesterday at Rich's 67th birthday party that my cousin Rodney - who'd been fighting Non-Hodgkins Lymphoma - passed away. One second we were enjoying the party then the next, those who got word, were in shock (we didn't say anything to the other side of the table as to not ruin the party). It made for a bittersweet day as we celebrated Rich (happy birthday!) and all that he's dealing with right now with his heart and having a PET positive spot on his lung. But the news of Rodney's passing made it difficult to enjoy the rest of evening...

I just talked to Rodney and his wife a couple of weeks ago regarding potential resources for information and my experience with similar treatments that we shared. He sounded hopeful and I thought they'd be able to find something either in Seattle or New York or Houston... I think the disease was pretty aggressive and didn't respond to anything for very long. I know it was causing a great deal of pain as it was in his hip. He did two nasty treatments, RCHOP and ICE. I haven't had RCHOP but know it's nasty and had ICE and I know first hand it's no picnic. He did them consecutively with no real break, pretty rough stuff for a 38-39 year old but much tougher I'm sure in your 60's. I've got a lot of respect for what he had to deal with...

My heart goes out to his wife Renee and the rest of their immediate family along with Randy and Melody.

Lymphoma is a horrible disease and know so many people struggling with it. I'm hopeful that all of the new drugs that are coming out now along with the new Gene Therapies, the research for a cure will continue to expand and continue to get funded. If you ever would like to donate to a good charity, the Lymphoma society is an excellent choice.

Rest in Peace Rodney

By the way, prayers and good thoughts for Mike Reed as he continues to fight MDS along with his Hodgkins. He has ups and downs and the latest I read today it wasn't the best news... Hoping for an upswing in blood counts and Mikes spirits. I'm going to put his Caring Bridge link up on my blog list for anyone who'd like to leave a positive message. The guy is a warrior, fighting Hodgkins for I think 8-9 years, legendary...

A bit of good news about me, I'm feeling better, more energized! I've just been sleeping like a bear lately and I think my body just needed the rest. Today was the best day yet as I did the backs splash in the kitchen in glass mosaic tile. I had energy to burn after running errands and making dinner. In other words, I felt normal today again, so nice :) I think I just have to make sure I take breaks between big events. I'm sure having a couple beers at each event contributes to my body shutting down... I just can't process alcohol anymore except for a drink here or there. The good news on that though is when I do have a drink, there's little to no pain in my back which gives me hope that everything is cool in there if you know what I'm saying ;) I'll know either way on Wednesday after an all day affair down at Karmanos starting at 9:30. Yup, part of being a guinea pig on these clinical trials means that they can shoot you up with radioactive sugar whenever they want. Seems like I have a PET scan every other month these days. Wonder if that's going to catch up with me one day...

Anyway, I got a little carried away, I wanted this post to be about Rodney only but sure he wouldn't mind.

Good night all, Chris

Recovery Mode

2011-09-15T23:02:00.005-07:00

I have to say, it's been a whirlwind since the last time I posted... Seems like right after I wrote that last one I had something going on everyday and I think it caught up with me as I'm still trying to recover.

It started with going to the ballgame two weekends ago where the Tigers were down 8-1 and there were black skies on the horizon and my buddy and I decided to leave and head home only to watch the Tigers miraculously come back and win on TV of course, ugh! Anyway, we decided to head to the free festival after in Royal Oak, "Arts Beats and Eats" where one second the guy from Foreigner was attempting to perform (it was actually pretty bad) and all of the sudden the storms that were looming down at the ballpark made there way North to Royal Oak. The next thing I know I'm scrambling to find shelter as the storm came gusting through with ferocity. It was kind of unnerving to be stuck under a tent with dozens of other people in the dark. I decided to go back out into the rain to find a better situation and found another tent that wasn't so packed but still pretty dark. That was pretty much it for the evening and jumped in the car to drive home only to find out that my street had no power, crap. I thought it would only last a couple of days - unfortunately a couple days turned into six and it got kinda creepy. So, with no power here, I decided to head down to Cleveland to catch the Tigers take on the Indians. Tickets down there were super cheap and my buddy had Hilton points so we got to stay downtown at the Hampton with parking included, perfect. Couldn't have asked for better games as we got to see Justin Verlander pitch the night game on Monday and witnessed an awesome comeback for the next day game. I even got a ball thrown to me by our best player, Miguel Cabrera. The Indian fans were so sparse we were able to sneak down right behind the Tiger dugout. Embarrassingly, when he threw me the ball, I actually dropped it, doh! The guy was nice enough to roll it back up the dugout where my buddy grabbed it and handed it to me, pretty cool!

The ball!

Me n Todd, a couple of geek baseball fans!

So, it was back to Detroit and unfortunately, my power still hadn't been turned on. In fact, turns out a Tornado came through and wiped on tons of power lines and uprooted some grand old trees. It was almost like Florida after a hurricane, tree branches and crap everywhere... Unfortunately, my ugly tree at my new place didn't get blown over but the tree I planted 13 years ago at my first place, a beautiful Bradford Pear, was blown over and all over the front yard, pretty sad.

Huge tree down in the park behind my house.

The remains of my little Bradford Pear Tree :(

As I was saying, I was now back home but it was just a shell of a home, crazy how much I depend on power! I was able to get my hands on a generator and at least had some light and could charge up my phone but that was it. The stuff in my fridge had already passed the point of no return so had to toss it all. Everything just seemed to get turned upside down, all you could hear was the loud noise of generators running all over the neighborhood, needless to say, it was tough to sleep.

I finally got my power back I think on last Friday morning thankfully. The sports madness didn't stop in Cleveland, I ended up going to the ballgame again on Friday night where they of course came back and won (ended up winning 12 straight before tonight) and the next evening, had a chance to be part of history attending the first night game at the Big House at the University of Michigan. That unto itself would've been great... What put the night over the top was the fact that one of the greatest games ever was played that evening in front of 115,000 fans. The scene was surreal, never been part of something like that. I still get a dropped stomach when I think about the energy at that game with all those people, it was something I'll never forget.

Me and Mike along with 115,000 other fans! Btw, Mike could've got big money for these tickets had he sold them but instead, invited me to go with him. Thankful to have good friends.

The mayhem after the game when Michigan scored a touchdown going 80 yards in 30 seconds, unreal!

That was last Saturday, today is Thursday and I haven't been right since. It actually started on the way home from Cleveland and hasn't resolved yet. I just don't have any energy! It's hard for me to get out of bed before noon these days. My whole body aches, especially my back. I just can't seem to get going... I had a little burst tonight and used it to clean up my place which got disgusting during the power outtage. Hoping to start feeling better tomorrow for the DIY street fair right here in my home town of Ferndale :)

I've got a scan next week on the 21st so we'll see if it's the medicine not doing it's job anymore and I have progression. I'm of course hoping for something better like maybe I'm just worn down from all the craziness but something has me a bit concerned. Let's just say I'm not as confident going into this scan as I was the last one...

Time will tell I suppose. I'll probably wait until then to update. I have the scan on Wednesday then I'm off to Seattle courtesy of my buddy Sean and the Delta buddy pass program! Chances are I'll be updating from the great northwest, should be fun :)

Until then...

Winding down the summer

2011-09-01T22:46:00.004-07:00

Me last week, feeling blessed :)

Sorry, I haven't felt like posting for some reason. Maybe because my normal time on the computer, at night before I crash has been spent catching up on Breaking Bad! I'm totally hooked on that show and I'm finally caught up after watching half of season two, all of three and the first seven of season 4. I can't decide if I like BB or Dexter better...

Anyway, just thought I'd check in and let everyone know I've so far avoided getting sick and thus a trip to the emergency room. I have a feeling my neutrophils have gone up. Usually when they're really low (like my last blood test), I can feel it in my throat, almost like the feeling of just before getting sick. It's weird how it always starts in your throat when your getting sick... Like I said though, that feeling is gone and I'm feeling pretty well and still enjoying the summer. Seems like it's lasted forever for some reason. The weather started off in June pretty crappy but got nice toward the end of the month and it's lasted the entire season. I think I'm ready for a change though and looking forward to the colors starting to turn...

My place is still coming along (the kitchen is almost done), have had a chance to get away up to Northern Michigan and starting to plan a trip out to Seattle to see my friends out there plus soak in some of the beautiful Northwest at a perfect time of the year to go :)

This weekend should be fun in neighboring Royal Oak as the Arts Beats and Eats festival is happening. Tons of free concerts and of course lots of cool artwork and great food. I had a blast last year and I think it's even bigger this year, Ford had a good year!

That's pretty much it for now, sorry if these posts are kinda boring. I've had a ton of things going through my mind that I've thought about sharing but have felt compelled to keep it simple. Sometimes it can bite you in the ass when you express your feelings on a public blog like this. People sometimes may get the wrong idea or sometimes I'm sure this stuff can scare people. It's hard to toe the line of being a Refractory Cancer survivor and a normal person. I so much want to just be a normal person but this little cancer thing somehow always seems to stop that from happening. It's something that will always be with me and wish so much sometimes I could just pack it up and get rid of it. How does one erase the stigma of having this disease?! It affects so many different aspects of my life in a negative way, what the hell!!!

Well, I guess I've gone from not sharing to sharing, weird how that happens. Funny thing is, I feel better already. Mission accomplished. Same reality, but negative thoughts released into the universe, pretty cool.

I haven't heard anything about my cousin Rodney so hoping things are getting better with that. I know my friend Mike Reed is still scrapping and hoping his blood counts can continue to rise and hold. Last I read about Zach is that the treatment he was on did nothing and they're hoping to get another chance at SGN-35 as it's one thing that worked in the past. The only problem is now that it's FDA approved (I must congratulate and thank Seattle Genetics for their work even though I had a horrible reaction to it) the cost of the drug is $13,500 per infusion. Yes, cancer drugs are expensive, especially ones that are just released for clinical use. Because of this, seems as if they're may be trouble getting insurance to pay for it without scratching and clawing. Crazy that someone like Zach who participated in the clinical trial to get the drug approved like myself, essentially making himself a Guinea Pig like the rest of us who partake in clinical trials, might not have the chance to use the drug to extend his life and buy him time for a cure. Something seems terribly wrong there...

Sorry about the rant, I guess I do have a lot on my mind...

Anyway, it's getting pretty late and the Benadryl is kicking in (just like allergies have been kicking my ass).

Hope all is well to the awesome people who keep up with me and this blog. I really appreciate it.

I'm out...

Problem could be developing, ugh...

2011-08-25T22:30:00.003-07:00

So I went in for bloodwork on Wednesday and while my platelet count was pretty steady at 41K, Dr. Ram told me for the first time (I really don't pay great attention to my blood results) that my neutrophils have been trending downward for a while now and Wednesday's test had me at 1.1, the lowest I can be is 1.0, bummer... Probably explains why I've been feeling a little crappy lately. I had a scare on Monday evening when I developed a nasty migraine headache and was up vomiting all night, not fun. I think I may have contributed to it by roughing up my counter tops in another attempt to refinish them (this time it worked :) without a mask on and also not drinking enough water as it was hot out Monday. Anyway, it went away next afternoon but the lack of sleep all night took a toll on me and I've trying to catch up ever since. Going back to the neutrophils (basically your immune system count), I have to be really careful of avoiding situations where there may be sick people in a closed environment. I have to bring a thermometer with me to check for fevers and if I get one, have to go to the emergency room as per Ram. Again, bummer...

I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.

Just when I thought I had it good... rats!

I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).

Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.

I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.

Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!

Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.

Optimistically,

Chris

Continuing to do relatively well :)

2011-08-11T21:32:00.005-07:00

Because I'm tired and just posted in my Hodgkins Forum, I thought I'd just copy what I wrote in my post there. I finally finished my bathroom! I'm now on to the kitchen which isn't nearly the project although I just had to rip out a section of my ceiling from the leak that was recently fixed in the bathroom, blah, blah, blah... Anyway, I'm redoing my counter tops (which were a dirty white) with this nice new product from Lowes where you reface rather than replace the tops. It's a 4-5 step process and hoping I can seal em up tomorrow and they look good. I have so many other little projects going on... I'm anxious to finish the inside of the place so I can spend the rest of the summer going on trips (hopefully).

Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!

Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)

Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.

It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).

I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.

Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.

I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).

Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.
__________________
Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001 http://chris-alt-del.blogspot.com/

2011-08-11T21:32:00.001-07:00

s

2011-08-11T21:31:00.000-07:00

Thoughts and prayers for the Keeleys

2011-08-06T09:30:00.005-07:00

I just wanted to take this opportunity to honor another lost comrade to this ugly disease. My prayers go out to Kimberly, who lost her husband Andy after six years of fighting Hodgkins. I remember reading about Andy when I first joined the Hodgkins forum and feeling so bad that he had refractory cancer and how he did it. Well, I'm in the same boat now and I know how he did it, the best that he could. Judging by what's written below, Andy was one great guy who lived a very rich life. Makes me want to make more of an impact, very inspiring and I know my fellow Hodgkins friends hearts' go out to Kimberly and will miss updates about Andy. He never really posted but you got a sense of how he was struggling with Kimberly's posts. I know he's comfortable now though. Rest in peace Andy, and peace be with you Kimberly.

Here is the obituary for Andy:

Stephen Andrew "Andy" Keeley of Alpharetta, Georgia died on August 3, 2011 after more than six years battling Hodgkin's Lymphoma, which is a rare cancer of the lymphatic system. Andy grew up in Brevard, NC. He married his wife Kimberly on top of Stone Mountain in Georgia in 1998. They had two children together, Olivia and Calvin, ages nine and seven.

Andy was a 1988 graduate of Brevard High and attended NC State where he earned his degree in Mechanical Engineering. He worked as an environmental engineer with Mactec, Inc. Andy was very environmentally conscious. He loved what he did and the people with whom he worked.

Andy was adventurous - cycling across America after high school, traveling through Europe and Costa Rica, running with the bulls in Pamplona, working in Amsterdam, and backpacking through the western and eastern United States. He was relaxed, calm, and comfortable in all situations. Andy enjoyed playing pool, woodworking and was an avid movie enthusiast. His favorite movie was Harold and Maude. Andy loved music, especially Jeff Buckley, Cake, Rusted Root, and Sara McLachlan. He loved taking walks and good food.

Andy did not let cancer stop him from having as normal a life as he could. He was a wonderful husband and father. Even as cancer eroded his physical abilities, he was going on Cub Scout camping trips, to rocket launches and hockey games, to the children's gifted classes at Georgia State and to Girl Scout activities. He loved to take his children to the Greenway, the pool and the movies. He taught both his children to ride their bikes a few days before being hospitalized with lung problems in May.

Andy was a proud member of the Unitarian Universalist Metro Atlanta North congregation in Roswell, Georgia.

Andy is survived by his wife, Kimberly Keeley, his children, Olivia and Calvin, his parents, Dr. James and Jo Anne Keeley of Brevard, NC , Dr. Mike and Rhonda Keeley of Shelby, NC, Scott and Kim Keeley of Charlotte, NC and Matt Keeley of Istanbul, Turkey.

In lieu of flowers, the family would prefer contributions be made toward a fund for his children's college education, which may be sent to P.O. Box 4876 Alpharetta, GA 30023. Additional contributions may also be made to the Leukemia Lymphoma Society or to Hospice of Cleveland County.

Here is their Caring Bridge site if you would like to check in:

http://m.caringbridge.org/visit/andykeeley/journal/entry/id/9324234/page/1

Platelets holding on

2011-07-27T21:59:00.002-07:00

Went to Karmanos today for blood work and still able to continue on the trial with platelets at 37K. Have to be really careful with my platelets so low as I bruise really easily and the bloody noses continue. I've learned the effectiveness of oxyclean for the pillowcases, that stuff really works!

Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.

BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!

Feeling well and hoping to keep it rolling...

Melting

2011-07-20T20:42:00.004-07:00

I think I'm melting, literally... It's been hotter and muggier here in Michigan over the last week than it is down in Florida this time of year and that's saying a lot. The worst part is that I don't have air conditioning in my house (but thankfully do in my bedroom) and it's pretty damn draining.

I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.

So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...

So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...

Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)

Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.

Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!

Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...

Out like a light,

Chris

No official word yet, but...

2011-07-06T21:06:00.008-07:00

I've been waiting to post the official results of my latest CT scan but unfortunately I haven't received them yet. I did however receive the unofficial quick read and the guess was reduction in some areas and stable in others. I probably could have called and pushed for the official reading but the truth is, I really don't care. The most important thing to me right now is I'm feeling relatively awesome despite some side effects and having a great summer!

Playing golf with buddies, finishing up just in time as the sun was setting

At the ballgame with my buddy Eric

The crazy futuristic stage at the U2 concert (which was incredible).

The bathroom project just after demo (before shot)

The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...

So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)

I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.

I feel truly blessed :)

Breathe

2011-06-28T23:30:00.002-07:00

Trying to breathe and relax. CT scan tomorrow, feeling decent, no idea how this is going to turn out.

Cautiously optimistic while being realistic. Remission would be incredible, reduction would be awesome, stable disease would be ok, progression would of course suck.

No matter, life goes on.

Details on results and other stuff like my first U2 concert in my next post.

Adios Mi Amigos

Insomnia Post

2011-06-22T00:00:00.002-07:00

Hello Everyone,

Just thought I'd check in, can't get to sleep. While this is nothing new, I remember that I used to do these posts during bouts of insomnia and they actually would help me fall asleep, so here goes!

While the back pain is still staying away, I've been dealing with some side effects from the RAD001. One of them is mucositis or painful lesions inside my mouth as well as something called angular chelitas which is a sore that won't heal on the corner of my mouth. At first, I thought it was just chapped lips but when I showed Dr. Ram, he told me it was a fungus or bacteria that is commonly caused by the drug. Just a couple minor but painful reminders that I'm still in treatment every time I eat, talk or smile, nice... I also contracted some kind of bug that has knocked me down pretty hard. I think it's a combination of allergies and the bug and the result is nasty headache, stuffed up, sore throat, cough, lost voice and complete exhaustion.

Funny, before diagnosis, I never used to get sick!

I know my last post was nice and rosy and truth be told, I was feeling really well when I wrote it. It just never seems to last very long... I guess I'm used to and it really makes me really appreciate it when I'm feeling almost totally healthy. In fact, it's now the next morning (writing this did make me sleepy and I did fall asleep before finishing, ha!) and I'm feeling better. I think one more day and I'll hopefully be back strong. The plan for the mouthsores is to go get some lidocane mouthwash and canker sore medicine (the sores feel like canker sores although much worse). The thing on the corner of my mouth seems to be healing as well (been using neosporin) so maybe me venting has helped something (like I say, it's always better to get it out!).

So, the plan for today is to go to an outside blood draw facility where they're going to draw like 16-20 vials to be sent Fed Ex to Baylor University in Houston. They'll then test my blood for EBV and if I'm positive, they'll somehow start growing my own modified killer T cells which are supposed to hunt down and kill any Hodgkins cells in my body. I'm also going to resume working on my bathroom which is almost done! In fact, I took my first proper shower here two nights ago and it was like a dream! I think by the next post I'll be able to post some before and after pictures. Next up is the kitchen which shouldn't be anywhere near as bad. Good times ;)

I think I'm ready to take a road trip or trip in general to break the monotony here. It's rewarding and makes me feel useful to be working on something (this house) but truth be told it's pretty stressful living in a place that's under construction. It's impossible to keep it clean and I can never find anything! I think I want to get away from this for a bit to recharge my batteries. Maybe a trip up to Northern Michigan might be in the cards, we'll see. I'm waiting for my convertible to be fixed as I just found out the transmission is shot. In fact, it happened right after my last appt. at Karmanos and had to drive home all the way in second gear! I have a mechanic I found last year who happens to live in Windsor Canada and his prices are almost half of anyone around here so I decided to take the car to him last week. It was pretty interesting driving all the way to the tunnel from Ferndale through some of the worst parts of Detroit as I had to take side streets all the way. You can imagine some of the looks I got driving 20 mph in the ghetto. Most people doing that are there for the wrong reasons I'll just leave it at that. Thankfully I made it and should be picking up the car tomorrow. It's going to take a nice chunk out of my savings but I've committed to that car (actually need it for Florida) so I'll bite the bullet and hope nothing else major happens to it anytime soon.

Alright, that's all I've got for now. For those who read this that I haven't talked to in a while, hope all is well and look forward to catching up soon.

Happy Hump Day!

Chris

Summer is rolling along...

2011-06-11T07:16:00.007-07:00

Chili and I driving down 75 with the top down on a nice warm evening. Probably not the safest thing to do, taking a self portrait while holding my dogs chin driving 70 mph but that's how I roll I guess!

I think I've been neglecting my blog lately which is a good and bad thing. Good because every waking moment I have lately has been spent either working on this house, napping or hanging out with friends. Not to mention, I'm trying to finish this great book called "Life" written by Keith Richards of the Stones. The title is a little misleading as you would think it would be some type of self help/awareness - whatever kind of book. Not quite... It's basically a firsthand account from Keef as he witnessed and was part of the Rock and Roll Revolution and the evolution of the Rolling Stones as they were one of the main drivers of this movement. The book has been fascinating to me being a lifelong Stones fan... Anyway, times that I would be updating this blog have been spent trying to turn a few more pages in the almost two inch thick hardcover. These days, post cancer diagnosis, I have a hard time concentrating on anything for more than an hour or so. Call it post cancer diagnosis/treatment induced A.D.D. I guess. Of course this is my own unofficial personal un-researched diagnosis but have a feeling if I looked it up would find plenty of information out there regarding this and people who have refractory cancer...

I'm writing this, staring out of my dining room window at an overcast sky on a lazy Saturday morning. The weather has been so weird here as per typical of Michigan. Earlier in the week, the temperatures got up into the mid 90's with some serious humidity. Of course, I have no air conditioning so I was pretty sleep deprived there for a couple of days. I decided to rig a window air conditioning unit for my room and sure enough, as soon as I did, the temperatures dropped down into what I understand was the 40's on Wednesday! So, the old saying goes, if you don't like the weather in Michigan, just wait a second and it'll change (or something like that...)

Honestly though, I've been enjoying myself and feel like there's still a ways to go with this summer as it started late. It went from winter right into summer, really not much of a spring which was weird. I'm certainly glad the warm weather is here as I've grown pretty accustomed to temps at least over 60 the last few years. Guess you could say I'm a little spoiled (but in no way do I feel bad about it ;)

My life right now seems to be in transition in both my physical being as well as my personal. The personal I will keep private as I can't put everything out to the blogosphere! As for my physical well being, I have to say this is probably the most normal I've felt since pre-diagnosis. The back pain is mostly gone and when it's there, very faint. I have difficulty on certain days with my energy level but think there's a direct correlation between that and the type of sleep I get the night before. Sleep has been pretty elusive lately unfortunately. It's a catch 22. Sometimes I'll be tossing and turning until 4-5 in the morning. There's a lot of activity in this neighborhood so if I don't get my sleep in prior to 10 a.m., there's not much of a chance I'm going to get much sleep beyond that. Come 3-4 o'clock, I can barely keep my eyes open and usually have to go down for a nap to avoid being a complete zombie. This of course affects my getting to bed the next evening and the cycle repeats itself. I can sometimes break the chain, say like over the weekend and find myself pretty well rested this morning after a decent nights sleep. It was a pretty weird sleep however as I rented the movie Black Swan last night and it creeped me out while watching it and carried over into my dreams pretty much all night (I think). What a great movie though, had me on the edge of my pillow! Sometimes, I feel like Natalie Portman in that I'm living in this dream or distorted reality. On the surface, you look at me, talk to me and everything seems pretty normal. It's what goes on inside my head... Am I supposed to be doing this well when I see others around me who have the same disease struggling and even passing? How long can I sustain functioning relatively normal before the beast decides to attack again? It's a constant challenge to stay in the moment. I think it's the reason why I try to keep myself so busy. Some of my friends and family worry that I might be overdoing it which may be true. There's a reason for it as I explain to them; it helps to keep my mind where it should be and that is in the present here and now. I feel that right now, I have a perfect grip on where I should be and hope I can stay "here" for a while!

FYI, in the spirit of trying to stay one step ahead of the Hodge, I've been corresponding with the nice folks down at Baylor University in Texas as there are two brilliant doctors down there working on some amazing therapies for refractory Hodgkins. I started with Dr. Bollard who has developed a vaccine for Hodgkins survivors whose tumors test positive for EBV virus. She has developed a treatment where she takes your blood, modifies it somehow, and uses it to grow specialized cancer killing cells that your own immune system makes that will directly target the EBV virus which is contained in the tumor. It takes a few months to grow these killer cells in a lab then they infuse them back into your body. The results for heavily pre-treated Hodgkins patients has been remarkable. Two of my friends are trying it, Marsha and Bekah and can't wait to hear about their results. Unfortunately, my tumors are EBV negative. However, there is another brilliant doctor (Dr. Heslop) who is developing a similar treatment that only requires my blood to be EBV positive not my tumors. This is also a vaccine treatment that turns my killer T cells into Hodgkins seeking destroyers but with a different target. Instead of seeking out EBV virus, it seeks out a certain protein marker found in most Hodgkins cells, CD30. I know I'm CD30 positive as it's one of the requirements to get into one of my previous trials, SGN-35 (the one that almost paralyzed me!). While I'm not overly confident in the chance for success with this (my disease rarely displays CD30) it's another breakthrough in gentler less toxic therapy. I am happy to participate in any study that allows me to live a relatively normal life while battling this disease. I also found out that Dr. Bollard is developing a trial for those who's tumors are not EBV+ so I think I'll have two additional options in the months ahead.

By the way, the RAD001 technology is no slouch, it's just that I can't really explain (nor have I taken the time) how it works! ;) I have a scan next month so we'll see if this is all a fluke or it really is working! I say that anything that allows me to feel relatively normal is working (or anything that keeps the back pain away).

Feels pretty neat to be participating in this crazy science!

I hope you all have a wonderful weekend and look forward to writing more posts like this :)

Chris

Life has normalized, finally!

2011-06-03T07:08:00.004-07:00

Well, I guess that's all relative but for me, I can finally relax a bit, thank God. I still don't have a fully functioning bathroom but can see the light at the end of the tunnel. I've been in one place for more than a few weeks, nice not to have to deal with the hassle of flying. Most importantly, I saw Dr. Ram this Wednesday and the results of my blood draw were (for me) a remarkable, 67K! We were both in shock and he was asking me if I quit taking the drug or had I taken a couple days off and of course told him no. So, I think my body has finally adjusted to the RAD001 and at least clinically, I'm still noticing a big improvement in my back where I am almost virtually pain free now!

I can't tell you how blessed I feel...

Hopefully this will at least get me through the summer and beyond.

Time to go attempt to go play golf for the first time in a long time.

This is awesome!

Quick Update

2011-05-24T08:28:00.002-07:00

So, went to get my blood checked again yesterday and my platelets inched up to 45K (from 37K). If I was still on the SAHA trial, I'd be booted off by now. However, I guess they just changed the rules for this RAD001 trial and apparently I can go all the way down to 25K. Of course, I don't want this to happen. I already deal with chronic nose bleeds and have bruises all over my body. That said, with the alternative being no treatment and my back pain returning, I'll just roll with this the best I can. So, I started the therapy back up again last night and due to go in for another poke on Monday. I'm going to start looking like a junkie if I have to keep this up, my arms are getting pretty bruised, kinda embarrassing...

Anyway, beyond all of that, life is pretty good at the moment. I think spring is finally here and my place is slowly coming together.

That's all I have for now, thanks for the positive thoughts :)

Chris

Not quite RAD...

2011-05-20T14:29:00.003-07:00

I just remembered when I lived in Socal how people used to say Rad all the time. "That's pretty Rad dude"... I think it's the only place I've ever lived where people say Rad, funny.

Anyway, I wish this was a rosy post but unfortunately, I had to stop the Everolimus or RAD001 on Wednesday temporarily (hopefully). Turns out, my platelets went all the way down to 37K. While I've been lower (of course, I had a stem cell transplant and all my counts were once zero), I don't remember it being this low for a while. This considering that only a couple weeks ago my platelets were at 104K. So, while I definitely think the drug is doing something to the disease, it's also wreaking havoc on my counts like we feared. So, the plan is to take 5 days off, go in Monday, have my blood checked again and see how fast they (counts) go back up on their own.

I just hope to God my body somehow can adjust to this and my counts will stabilize. If not, there's always a chance maybe they can reduce my dose but Dr. Ram didn't seem too enthusiastic about this. I guess we'll see what happens Monday.

Anybody care to join me on the roller coaster?!

Chris

Ra

2011-05-20T14:29:00.000-07:00

Through the fire

2011-05-17T10:07:00.002-07:00

Whew, made it out of that alive, thank God. That was a pretty nasty whatever it was and glad it's gone. All I have to deal with now is the mouth/throat sores and an ever increasing itchy rash that seems to move around my body. It's been especially bad on the backs of my legs and calves. I don't think it's the Hodgkins itch though, more of a surface itch.

So, I'm back here in gloomy Michigan! This spring apparently has sucked so far just like the winter. Even though I was sick, glad I had a chance to get a few days of sun down in Delray :) I'm hopeful that by this weekend the weather will get nicer, seems to help everything up here... One nice thing is I've had some bare patches in my lawn that I've put grass seed down and it seems to be taking because of the rainy damp weather! My neighbor was joking that we're going to have "yard wars" now that there are four of us who are either unemployed or work from the house. I really dig gardening (no pun intended, haha) for the aesthetic aspect of it plus it's very relaxing to boot. I have years to catch up on these guys tho as this house had been a rental for years and nothing had been done as far as raking leaves (thus the bald spots) or weed control. I went over with a layer of weed and feed and the dandelions just laughed at me! In fact, I think it caused them to grow even more. Had to go buy some heavier duty stuff and we'll see who's laughing after they get a dose of ACE hardware's finest, ha!

I'm really liking my projects although at the same time can be a major source of stress. I realize it's a process but sometimes it gets difficult living in chaos (as if my life isn't chaotic enough). Yesterday, I was hanging greenboard in my new to be remodeled bathroom and the most dubious luck you could have, drilled a drywall screw dead center right through my hot water feed pipe. I knew something was wrong after the screw was halfway in and I heard a sound that best resembles the first turn of the cap on a bottle of pop/soda. I wasn't exactly sure what it was and decided to back the screw out and the next thing I know, there's hot water shooting across my bathroom all the way into my bedroom! I tried for a second to put something over it but then quickly realized I needed to get to the basement to shut of the water supply. By then, the damage had been done and because it's an upstairs bedroom, the water came through the ceiling into the kitchen, yikes. I forgot how fun this stuff is ;)

So I'm off to the hardware store to look for a coupler to fix the hole in the pipe then will get back to putting the bathroom together.

Hopefully everything else will start falling into place after that.

Speaking of falling into place, one nice thing is I think this RAD001 is doing something good! My back is so much better, can't even tell you... There are still moments when I get a twinge if I twist the wrong way but I'm so much stronger back there. It was to the point before that it even hurt to inhale or sneeze/cough. This is such a blessing and I couldn't be more thankful. Now, if only I can keep my platelets up high enough to continue... Dr. Ram was pretty concerned last time I was there regarding this and even mentioned I may have to skip a dose if they dip below 75K. Turns out last time, I was 75K right on the button. I told him that I'd been taking 500 mg of Naproxen/Aleve (this is known to lower platelets) so I haven't taken any all week hoping it makes a difference.

Guess I'll find out tomorrow...

Hope everyone has a great week!

Spoke too soon...

2011-05-11T20:21:00.000-07:00

Just when I get all pumped up about feeling good, the RAD001 decides to sneak up on me and wreak havoc. My body must be adjusting to the medicine as I have the chills, bad headache, mouth and throat soreness, body aches and woozy head. Kinda feels like a really bad flu. Hopefully it won't last long and I can get to enjoying Soflo...

Just wanted to send out some prayers for someone who I've never met but have followed his story ever since I was diagnosed. His name is Andy Keeley and unfortunately, Andy is having a tough time right now. He's been fighting Hodgkins it seems like forever and it's spread to his lungs badly and him and Kimberly his wife have decided to call in Hospice. This is really sad and never easy to stomach. All my best to the Keeley's. I hope you find comfort.

Hoping for a better day tomorrow.

Life is such a roller coaster...

Feeling more at ease...

2011-05-09T08:29:00.004-07:00

It's amazing how much more at ease and less stressed out I am in the period of less than a week...

I started the Everolimus last Wednesday and after some initial bumps (mainly GI and fatigue stuff which is nothing) I really don't even notice I'm taking a drug. In fact, dare I say that I'm already starting to feel positive effects from the RAD as my back pain has been easily cut in half, yeehaww! I also notice how much more relaxed I am. I have to say, that moment (and during) when I found out the SAHA was going bye bye was one of the more stressful anxiety ridden times of my life besides the initial diagnosis and major treatment era. That actually has to stand alone as nothing will ever compare to that.

Anyway, I have renewed peace of mind and an even better outlook on life now that I've gone through all my awful stuff. I'm feeling better, my place is coming together (I've got the following going in the last week, a stand up shower, my stove, washer and dryer and all the crap and debris in my yard cleaned up. It's starting to feel more like a home now rather than a bomb shelter.

It's more like a scene out of a Dexter episode but at least I can take a shower standing up! Another couple of weeks and I'll post the after picture, it should be sharp I hope...

So, it's off to Karmanos now for blood work. I'm leaving to go back down to Florida Wednesday to grab some stuff like my car, bike, tools, etc. and driving back up once again (this time solo, no Chili).

Speaking of Chili, she's all of the sudden decided she likes sleeping on the bed rather than under! She's been my rock, haha.

Hoping this upward trend continues. Actually, more than hoping, I expect this upward trend to continue! Part of my new attitude...

Hope all is well with everyone who reads this.

BTW, happy belated Mothers Day to all you Mom's out there and to my very special Mother Cindy. Mom, as I told you yesterday, thank you for being there for me and for all the unconditional love you give me every day. I don't know what I'd do without you. Love you very much...

Cheers!

Chris

Osseus Erosion

2011-05-03T23:37:00.002-07:00

Well, I started the trial today and so far, no problems. It's just two little pills everyday and that's it. I sure hope these two little pills start doing something fast as I just received the official scan report today and it's not looking good for my back. Turns out, my T-9 through T-11 vertebrae are all eroding from the disease again. Not to mention, I have another new hot spot in that area which means that the Hodgkins is declaring all out war on the Thoracic area of my spine. It's not like the constant aching I used to have (which in a way is a good thing) although now when I make a wrong move, it (the pain) completely knocks the wind out of me (for instance, trying to sit up from a cushy couch or get up out of bed).

While I'm hopeful the Everolimus is going to stop this in it's tracks, it seems like I'm going to be really limited in what I can do now physically (again) and it bums me out to be honest. I just have to come up with some new summer hobbies and know I'll adjust...

Just in case anyone was wondering how the drug works, here's a brief summary:

"There was sound rationale to test the mTOR inhibitors in lymphoma," said principal investigator Thomas Witzig, MD, from the Mayo Clinic in Rochester, Minnesota. He explained to Medscape Oncology that mTOR kinase is a key regulator of the PI3K signal transduction pathway, which is important to the growth and survival of cancer cells.

RAD001 or Everolimus is an mTOR inhibitor.

I've also initiated the process of getting into a trial being conducted in Houston where they take my blood (if they can find EBV virus which supposedly 95% of the human population present) and grow killer T cells that are targeted to find Hodgkins cells. They do this by being attached to an antibody, CD30 which most Hodgkins cells contain. I think this trial is especially cool as it's using your bodies' natural defense mechanism (T cells) to kill off the disease, not toxic chemicals like chemo. The problem they've had in the past is the programmed T cells dying quickly floating freely in the blood. Now that Dr. Heslop is experimenting with attaching these T cells to the CD30 antibody, it takes the T cells directly to the cancer and in theory extending their life span. This is at least the way I understand it, I could be off but think I have the right concept. Needless to say, pretty cool stuff.

Apparently all of these new studies are sprouting up from the Human Genome project that was started in 1989 and finished in 2003. It was a collaborative worldwide effort between scientists and is already giving doctors and scientists like Dr. Bollard and Dr. Heslop the opportunity to experiment with these novel ideas how to fight cancer besides the old way of slashing and burning with chemo.

I'm glad (dubiously) to be part of history and hope that while contributing to science, I can get some relief over here!

I'm out for now, good night.

Chris

Tommorow is the big day...

2011-05-02T14:15:00.002-07:00

So, I go in tomorrow at noon to see Dr. Ram and hopefully receive my Everolimus pills. I'm really looking forward to starting this (while also scared out of my wits). I'm looking forward to something to quell the ever increasing pain in my back. I'm having a hard time even pulling a rake in the backyard. It's weird too as the pain has switched from the right side to now on my left side. It's almost like when I engage that particular muscle, it pushes on the lesion which must be pushing on a nerve. I have difficulty in getting out of chairs, bed, just up in general. Like I also said, I'm petrified of what side effects I might develop with some of the worst being severe lung toxicity. There's also the possibility of nasty rashes (which as long as not on my face, can probably handle) and of course, GI issues. I guess I'll know more by this time next week as the drug has a chance to get into my system.

Just wanted to touch on some history with the killing of the murderer Bin Laden, what a surreal moment it was to click on the tv last night and see that news. Just goes to show how important it is to focus on diplomacy and not just stiff arm tactics like the last administration used. The only way we are going to defeat these psycho's is if we can get the rest of the world to help and how they got Bin Laden is a great example of this. I was pretty proud of the president last night, something I haven't been able to say in a while...

Well, that's all I have for now. Just wanted to send some prayers and good vibes to Rich, my stepfather who received preliminary news the other day that he probably needs a heart transplant. I think I'm having a hard time accepting the news and I need to investigate the whole matter further. I know they've come a long way with this and just going to hold out hope that something can be done for one of the greatest guys you'll ever meet. Rich is one of the nicest, most generous, caring people that I've ever met and not sure what our family would do if anything happened. So, if you're reading this Rich, please don't give in/up and know that there's a solution out there, we just need to find it.

Peace in the Middle East :)

Chris

So Long Lee :(

2011-04-29T14:11:00.002-07:00

Found out yesterday that my friend Lee passed peacefully with his wife Dana by his side. While I am crushed, I'm also thankful that he is at peace. Sending love to Dana and Mr. and Mrs. McPherson, all great people.

Lee will definitely be missed but certainly not forgotten.

With a heavy heart,

Chris

BTW, I think everything is a go for the new trial. I had a nastier than normal bone marrow biopsy (they had to chip off a piece of bone) on Wednesday and just waiting for the results.

Probably will update as soon as I start taking the pill. Hoping this starts working fast as my disease has grown according to the PET/CT report.

Random Stuff

2011-04-22T22:30:00.003-07:00

Well, I finally got internet access today in Michigan and I'm officially connected again, hooray!

It's been a bit of a challenge living here though as I don't have a shower or sink in the bathroom. I've been able to shower at friends' houses though so I manage not to get too ripe, haha.

I kinda look at it as just do what I can on these places and eventually everything will get done, right? The only question is how long is it going to take me... I'm guessing six months so here's to good health for the next six months.

Speaking of which, I think I'm in the Everolimus (RAD001) trial at Karmanos! My platelets were a whopping 94K, I couldn't believe it! The only other hurdle now is another bone marrow biopsy which will now be my 7th I believe. I still can't get used to the fact that they're sticking a huge needle into my hip to suck out bone marrow. I want to be out of it when they do it. My back is lick a freaking pin cushion, jeez. This is on the heels of one of more painful procedures I've had done in a while... When down in Florida, I got one of those gel earplugs stuck in my ear as I tore off a piece too small and it broke off in there. I tried to get it out with tweezers and all I did was push it in further. So, I went to the ENT and he didn't have his normal telescope so he basically had to "dig" it out. The first 10 or so digs weren't that bad. However, the ear can get sensitive really quick, especially the inner ear and the more he did it, the worse it got. The thing is, the piece of earplug was fused to a portion of my eardrum. He basically had to rip a scab off my eardrum to get it out. I told him it would be a great torture technique (sure it's been done). He was actually a pretty funny guy and we were joking about that scene in the Star Trek Wrath Of Kahn flik were the millipede like creature crawls into that guys ear, gross...

So, back to the trial, I just need the bmb and another PET/CT. The goal is to start next Wednesday. I'm to beware of side effects like lung complications or toxicity, low counts, rash, nausea, fatigue, loss of appetite and all kinds of other rare side effects. I'm trying not to think of any of that as it's out of my control and I have to stay balanced and keep my expectations moderate while staying hopeful. I know of people who've been on this drug for almost a year or maybe more so that's good. I'm definitely due some good luck!!

So to close this out, I just wanted to say something about my good friend Lee McPherson. As I mentioned before, hospice has been called in and they're going to do everything possible to make Lee comfortable as he leaves this world and enters into the next. It's tough for him because he can't speak right now but can squeeze his hands to communicate. My good friend and former roommate Mike is flying in from Hawaii to Pasadena to say goodbye this weekend. I wish I could go... I actually met Lee through Mike as those guys used to be roommates here in Michigan. They played in a band together called Skinmill, Mike was the drummer and Lee the base player. Lee is one of the most talented people I know. He would come over, pick up my guitar and start playing along with songs that came on the radio. He wasn't even a guitar player... Lee also is a talented writer. He used to write the Pistons blog on Mlive.com. He was a journalism major at Michigan State and I went to Michigan so we would talk a little smack here and there of course. As many of you may or may not know, Lee was diagnosed with his brain tumor like a week after I was diagnosed with my cancer so in a way, we're partners. I feel like I'm losing my partner and it really sucks. He was doing so good, beating the odds and I admired so much his calm and positive attitude. He went back to work and even went back to play with his new band. The tumor messed with his balance and motor function but would say that when he played the base, it was like nothing happened. I guess that's muscle memory for you. Anyway, I just want to say to Dana and Lee that I love you guys and wish things could be different. I'm so proud of the both of you how you went about everything with grace and courage. Lee is like a mentor of mine even though we didn't talk a lot. He's one of those guys you can pick up with right away no matter how long it'd been since we rapped. Lee is a really funny guy in zany sarcastic way. I admired his writing skills and aspired to write from reading his columns. Lee also had great taste in music and to this day, some of the indie bands he introduced me to are in my all time favorites. We really have a bond that not too many people have and I'm really going to miss the guy.

P.S. Lee really loved Jaco Pastorious.
P.S.S. I mistakenly called out Lee's blog as Third Eye Blind last time (hope you found that funny Lee ;) I was a wreck that night after the news but anyway his blog is One Quarter Blind if you would like to check it out on my list. He is and always will be a cool cat.

Here's to you Lee, you won't be forgotten brother

Lee

2011-04-18T18:01:00.003-07:00

Hello Everyone,

Just wanted to ask if you could light a candle for my friends Lee and Dana in Pasadena California. Dana just informed that they're bringing hospice in as Lee's tumor is no longer responding to Tx.

I will write more about about this later. If you care to leave any positive messages, Lee's blog can be found on my blog list under "One Quarter Blind".

This sucks...

Craziness...

2011-04-15T21:31:00.004-07:00

I guess you could say I've been really pushing the limits these last several weeks. After doing a full move up in Michigan then driving down here to Florida to do another full move with repairs and renovations mixed in at both places makes me a pretty tired dude. My back is completely torched and I have to drive back up to Michigan starting tomorrow to make my 2:20 appt. with Dr. Ramchandran on Monday. I've decided to take the Bimmer up as it doesn't have air and it's getting stinking hot down here. I've got a couple of guys in the hood back in the D that do work on it for me and another guy in Windsor Canada and I think I'm going to have them fix the air ;) Anyway, I hope the car makes it once again... It's been making some pretty strange noises lately although don't think it's anything serious. We'll see what happens...

So, as I said, I'm finally out of my old condo down here - permanently - thank God. That place has been nothing but trouble ever since I bought it in 2005. I knew it was going to be trouble after what I went through with my first two tenants. I was pretty new to renting back then and decided to take a chance on two guys just out of rehab (nothing against recovered addicts btw). The thing is, one of the guys didn't last very long in his recovery (unbeknown st to me) and his roommate moved out, breaking his lease after the first two months. The guy who apparently relapsed, Chuck, brought in another guy (again had no idea) to live with him and this guy had some serious problems. In fact, when they finally moved out and I came down to check the place out and clean it up, my neighbors told me what happened right before they bolted. I guess Chuck's new roommate went on a crack binge, went nuts, stole a car and drove it back to my place. Of course the cops showed up (I had nosey neighbors) and it was a major scene (like 5-7 cop cars I guess) and all the while, I was living out in Socal going about my business totally oblivious. Turns out, the guys were so paranoid that they bolted plywood up to the screen porch so no one could "come get them". As Whitney Houston says, Crack is Whack, haha.

I had a couple more interesting characters living there too (none as bad as Chuck and his gang thankfully). I guess one couple were running a massage business (legit I think) out of the place. It was when the last couple bolted on me (when the economy was in dire straights) that I decided to move in to my crib at Town and Country Estates. I guess I wanted to be part of the history, haha. Who would've guessed my contribution would be almost burning down the entire building, holy cats! As far as I'm concerned, that place is haunted. To make things even more interesting, the HOA board were a bunch of tyrants with the lead tyrant, Mr. Adrienne Barbe. Talking to this guy was like being a fresh army recruit taking orders from his commanding officer. Things got a little better but I won't miss dealing with all the bylaws and all the politics. This new place is so much more chill and so much more quiet. In fact, my place backs up to some rare Florida "Scrub" (13 acres of natural area made into a nature conservancy) which I guess is one of the remaining 2% in Palm Beach County. The only bummer is the train tracks that run parallel to the Scrub! Oh well, you can't have it all right?!

Amongst the craziness of the move, I was able to get down to Key West to visit some friends for a few days. While it was fun, there was some drama involved that took a little bit of lustre off the trip. Overall though, it was still fun. It's almost impossible not to have a good time in Key West!

When I returned back to Delray, it was right back at it trying to get this place together. I had no power or water for the first 2 days, very interesting... Just like I don't take anything regarding my health or physical/mental well being for granted, I will now never take things like electricity (it was basically a sweat box in here for two days), running hot water or running water period for granted. At night, I went old school and burned candles (donated by my neighbors) for light. I did get the water turned on after those two days but unfortunately the hot water tank was shot and it took me two or three days to get it going. I tried to bring the tank over from my old place but it lasted two days then died on me. I then went and bought a new one from the Home Depot and in a major bonehead move, plugged it in before it was filled with water. Luckily all I had to do was replace one of the heating elements but at that point, I had enough of the water heater situation, especially having to work in cramped space with a messed up back. I'm hoping this is why I'm having so much pain right now and it's not the cancer. Truthfully, it's probably a combination of the two that will get better once I hopefully start the trial and I have time to heal a bit. I don't think I'll ever be right with herniated discs but perhaps there's a way to make things better than they are now... I'm planning to search for a good Orthopedic Doctor who accepts Medicare in Detroit or South Florida if anyone knows of such a person. My Mom told me she has a guy so hopefully he can fix me up because I definitely need it.

I've got so much to talk about but it's starting to get late and I need some sleep before having to drive all day tomorrow.

I feel satisfied that I've pushed myself to the limits both physically and emotionally (dealing with some shocking issues this week) and made it out a stronger man in both aspects.

I'll finish by thanking my awesome former neighbors Harry and Marguerite. I feel lucky to have made friends with these fine folks. Marguerite did some Reiki on me at the pool today and it was the first time I've ever had it done. I became a little skeptical of "energy healing" but have to say, after the session, I am now a believer. I don't know what she did but while she was doing it, I got really emotional and had tears running down my cheeks that I couldn't stop, even as hardened as I am from all of this. I mostly had my eyes closed but when I opened them, there was a beautiful bird hovering above that seemed to stick around for a large portion of the session. It was almost as if I felt elevated or something, hard to explain. The emotions are real though and have never been moved to tears by someone placing their hands above my head. I hope to someday pay it forward like you mentioned Marguerite if you're reading this :)

Goodnight everyone, will update with my game plan after I meet with Dr. Ram on Monday.

Chris

Checking In

2011-04-11T21:34:00.002-07:00

Just wanted to let everyone know I'm ok and doing fine. Just have been a little overwhelmed with everything lately and have taken a break from posting due to two moves in two weeks and the lack of internet access.

I'm having a lot of problems with my back which I'm sure have been exasperated by the moves.

I'm handling the uncertainty of the future relatively well and have decided to enter into the RAD001 (Everolimus) trial at Karmanos in Detroit if my blood counts cooperate. I'm worried as the platelet cutoff to get in is 75,000 and I've been struggling every time to get to 50,000. Hopefully the time off SAHA has allowed my counts to recover... The plan is to meet with Dr. Ramchandran on the 18th and if everything works out, I start the trial that same week. Once again, prayers and good vibes solicited here.

On another note, just wanted to send some well wishes to Rich, my step dad. He's been having issues with fluid in his lungs and heart issues. He's been in the hospital and I know not enjoying any of it. Get better Rich!

Hoping to find some mojo to post an interesting post soon...

Chris

Lee

2011-04-01T20:00:00.003-07:00

Just got this email as I'm driving down to Florida, I feel sick. If you have a candle, please light it for my friend Lee McPherson who happens to be a true warrior and hero.

As many of you know (forgive me if you don't know, I can't keep track of who I've gotten in touch with), Lee had a seizure about a month ago. An MRI showed that there was a new spot and further progression of the tumor. Lee has been struggling to recover from the seizure and seemed to be improving until about two weeks ago when Kathy (Lee's Mom) and I noticed that he seemed to be having more trouble with his right side, with balance and with communication.
Lee had a follow-up appt. (he started a new chemo recently) with one of our oncologists (Dr. Nassir) yesterday- Dr. Nassir was concerned enough with Lee's condition that he wanted to admit him to Cedars (Lee refused), and compromised with an MRI scheduled for today.
We had the MRI at 10, and a follow-up appt with our regular doctor, Dr. Rudnick. Today's MRI showed that within the space of month the tumor has progressed significantly. It is now progressing in two ways- enhancing and non-enhancing, both aggressively. At this point Dr. Rudnick gave us a couple of options:
1. radiation of Lee's entire brain- this can lead to compromised thinking, and an essential change to who Lee is.
2. a combination of an experimental drug (Vrinistat) and Accutane (yes, an acne medication, but it has shown some ability to work on some cancers)
3. another combination two different chemos
*there is a 7-15% chance that Lee will respond well to the above chemo treatments
4. do nothing more in the way of treatment of the cancer
This decision is ultimately up to Lee and we are taking the weekend to talk/think about it. We have an appointment with Dr. Rudnick Monday to talk about what we want to do next.
Lee is really tired and struggling to get around and communicate, but if you would like to come by and see him or send him an email, I know that he would appreciate that you are thinking of him. It might be a good idea to call first if you are thinking of coming by this weekend, as we have a lot to deal with in the next day or two.
I hope that I haven't forgotten anyone, and that I've been clear about what is going on- details, etc. Let me know if you have any questions, I'll try and answer them and I'll keep everyone posted as things develop.
Dana

New Day, Better Outlook...

2011-03-25T09:39:00.002-07:00

Well, thank God yesterday is over. I think the fact that I only had a few hours sleep the night before (due to all the craziness with my flight), was at the doctors office for 9 hours starting at 8:00 a.m. and the shocking news was enough to almost send me over the cliff It's funny, while we were all waiting in the dr. office, we were joking around how I was a rock star getting ready to start my 17th cycle! My trial coordinator was even so confident that he went ahead and filled my pills and sent me out to the lobby to wait for the official word which at that point seemed like a formality. It was then when they called me back in the office and I sat there an waited for another half an hour while they consulted that I knew something was wrong and sure enough, BAM!, they hit me with the news. Talk about being left with your pants down!

So, today, I have a new and better attitude. Strange how I can switch right back into warrior mode. I shot off a few emails and posted on my forum like I said. While I haven't heard anything back from my forum Hodgkins friends, I did hear back from Dr. Ramchandran and found out that phase 3 of RAD001 is getting ready to open at Karmanos in the D in a couple of weeks. While I have no idea if it'll work or not, it at least gives me hope, all a cancer survivor can ask for...

Here's to a new day!

Chris

Tough News...

2011-03-24T16:09:00.002-07:00

It's really hard to write this but I'm off the trial. My main lesion (in my retrocrural area) has gotten much bigger, from 1.8 cm x 1.1 cm to 4.7 cm x 1.7 cm. While the other lesions are essentially the same, the major growth in my "spot" is enough to constitute 50%+ growth from the lowest point of my disease (or nadir).

I have to say, I didn't see this coming and think I let my guard down a bit, big mistake. I'm kinda writing this in a state of shock - almost outer body experience - but starting to feel a little better as the anti anxiety meds are kicking in. It's going to take a little while to regroup once this really settles in...

It's just so hard to start over, ugh... I have to find something that's enrolling now (hopefully at someplace I'm familiar with). I'll be contacting doctors and consulting with my Hodge forum friends for advice as to what to do next.

I'm basically walking into the unknown again with no guarantees I'm going to be able to find my way out. The unknown is always the scariest thing.

Once I get over this disappointment, I'll gather my strength and move forward the best that I can.

The most important thing I think is to just try and keep my head up and keep the faith. It's not like I haven't been through this kind of thing before right?

I will never again let outside stress into my life. No matter what happens, I need to stay on an even keel and solely focus on enjoying every minute of this life the best that I can.

This is a sad day. However, I know I will bounce back.

Sorry for the bad news,

Chris

Switching gears…

2011-03-24T09:42:00.005-07:00

So, after a major delay, I’m finally on my way to New York. The flight was two hours late and the runways were closed at LaGuardia so we had to make a pit stop in Atlantic City. For a second there, I thought I was going to have to rent a car or figure out how to take the train as I have to be at NYU in Manhattan tomorrow morning for blood draw and subsequent PET scan. I have to say, I’m really sad to be leaving Florida as this was probably my best stint yet. I mean, I really had a great time from start to finish!

Big thanks to my buddy Mike for putting me up in his place until I’m able to transition into my new place. My condo is still bombed out and finally got word that the insurance is going to replace the windows, clean up the smoke damage, replace the duct work (and possibly AC unit) plus other incidental stuff. Hopefully once this is done, I can find a buyer for the place. We’ll see…

I did have something crazy happen to me yesterday and of course I have to document it ;) Mike lives on a canal connected to the intercoastal and he has kayaks. We went out one night on a tandem trip and it was really cool. He showed me this spot where these people have sunken green lights on the bottom of the canal to help them pull their boat in properly at night. Turns out, there’s these fish called Moonfish that really dig these lights and will swim on their sides in circles all night around them! The fish are a little larger than my hand but they are bright silver and have this really cool fin coming off their dorsal. It’s really quiet out there too and you can hear the birds singing, very peaceful.

So, with that experience a couple nights ago, yesterday I decided to take the 1 man kayak out by myself to the same spots, by the mangroves but during the day. I was having a great time, drinking in the nature, sunshine and relaxation. I saw a pair of really sweet blue herons and managed to get some shots of them. I was just kicking back enjoying myself floating down the canal when all of the sudden my body started to go into convulsions! It started with my calves. I can’t describe the pain but liken it to being shot (as I’ve written on here before). Normally when this happens, I’m in bed and all I have to do is somehow get out and stand on the floor and it goes away. However, being seated in a one man kayak, I unfortunately didn’t have this option. So, I tried to straighten my legs or pull my feet back and no matter what I did, another muscle would start spasming, it was horrific. I could actually see the muscle in the front of my shin pulsating. As I tried to reach down to massage the muscles in my legs, the muscles in my abdomen started to do the same thing then my hands then my back. I felt like I wanted to die. It was so bad, I had almost considered trying to step on the sharp rocks that were below me that would have surely tore up my feet something fierce. Luckily, I decided against that and secured the stuff I had with me in the boat like my sandals, otter box and hat and fell over into the water thinking maybe I could “kick it out”. Turns out, the spasms just moved to other areas of my body, ugh. I don’t know how long this lasted, seemed like an eternity, but I was almost screaming in pain. I managed to pull myself together while in the water and started to push the kayak toward the residential area of the canal where I saw ladders that I might be able to step on to hopefully relieve the madness. As I was doing this, I looked up and noticed all of the residents that owned these beautiful homes on the canal were out and asking me if I was ok. I can imagine it must have sounded and looked pretty scary to these people. I explained to one of the guys as I approached the ladder that sometimes I get these cramps and told him I just needed to stand up somehow. I then managed to get to the ladder, stepped on the bottom step which was full of barnacles (managed to not cut my feet somehow) and took one step up and the pain started to diminish immediately, thank God. I told the guy that I was ok and he joked back by saying “thank God I didn’t have to jump in and get you”, haha.

Just kicking back, enjoying the sun and beauty of the place!

Even spotted a pair of beautiful Blue Herons (the other one flew away after I spooked it)

Almost had to step on these rocks, glad I didn't...

So, I rested for a few minutes on this ladder and decided I needed to try and get back to Mikes place somehow which was about a mile away, major challenge. My hands were still severely locking up, to the point where I couldn’t grip the paddles except by rotating holding it with my thumbs then index fingers. I had to take a bunch of breaks and hold my arms, hands folded, over my head when I had a spasm. I tried to close my eyes and take deep breaths… I was so worried it was going to happen in my legs again and by now was quite traumatized to say the least.

I finally did make it back thankfully and almost kissed the dock when I was able to get up onto it. The cramps continued but nowhere near like they were while in the kayaking position on the water.

It’s weird as all the previous times this has happened (mainly in bed) I think I could attribute it to being under hydrated. In this instance, I drank a 64oz Gatorade while I was paddling. Who knows, maybe the fluid didn’t have enough time to circulate to my muscles. Maybe I was too behind on drinking for it to take effect. All I know is ever since then, I’ve been drinking tons of water whenever I can. I still had cramps this morning but they were manageable. As for my hands, they’re still locking up, ugh.
It’s really ironic as I just wrote in my last post how much stronger I fell and all that. Looking back, Murphy’s Law tells me I probably shouldn’t have written that post, haha. All I know is that I hope that never happens again, way too scary and painful…

So, like I said, I’m in route to Manhattan where I have to show up at NYU tomorrow morning at 8:20 for blood draw. I’m nervous as I can’t eat my pineapple because of the mandatory fasting 12 hours before the scan. So, the plan to try and get my platelets going is doing all seven or eight flights of stairs at NYU, then go in and immediately do the blood draw.

With that uncertainty looming, I then go upstairs to the second floor to prepare for my PET scan (which is a whole other pile of uncertainty). I need to go two for two tomorrow! Anything else is unacceptable at this point.

So, needless to say, I’m asking for all the good vibes and prayers I can muster ;)

All that said, I feel really calm right now and somewhat confident (at least for the PET scan). I know there’s still disease in there as I had a glass of wine last night and my back was on fire, right where my disease is located. It doesn’t seem worse than normal however and hoping for stable or better disease.

Should know the results by late afternoon and will post once I know.

Thanks for reading and in advance for the good vibes and prayers :-)

Chris

Life is good!

2011-03-19T15:30:00.007-07:00

Just sitting here watching March Madness and thought I'd do an update. Really glad to say that I'm still feeling pretty well and have really been enjoying everything South Florida has to offer :)

So, the last I updated I mentioned that I was going to hit the Delray St. Paddys Day parade and that I did! It was pretty cool as my good Hodge buddy Bekah (who is also doing very well and looked great :) came down with a few of her good friends who were really nice. It was great to see Bekah and her posse and we all had a great time at the Parade.

Hangin out at Paddy McGhees on Atlantic!

Bekah and the girls at the after parade party (which obviously hadn't started yet, lol) at Brus Room.

Every day down here lately has been picture perfect. The nice thing about it is I've actually been able to enjoy it this time! Last winter was so different... Dealing with Fibromyalgia then the Guillain Barre Syndrome pretty much wiped out the entire winter. I remember it being a major task just for me to update this blog because I couldn't control my fingers to type! Doing an entry like this would take me hours having to punch keys with one or two fingers. I'm so grateful...

So, now that I have most of my strength back, I'm able to do things again that I love like riding my bike, playing golf, fishing, walking down the beach - hell - walking anywhere! It's funny, I was at the mall yesterday and they had a guy in the parking lot with an extended golf cart to give rides to people to the mall from their car! At first, I thought it was just the ridiculous amount of money that people have around here then realized it's probably there to cater to the older folks who may have trouble getting around. The last time I was at that mall was last winter and remember majorly struggling to walk across the parking lot, not to mention once I got inside. (I would have gladly jumped on that golf cart if it was there last year, ha!) It was then that I realized something was really wrong with me. In fact, now that I think about it, I was actually Christmas shopping. I remember having to take the plastic bags and wrap them around my wrist so I could carry them. I also remember trying to do my signature on the credit card machine and barely being able to scratch something out. I can't tell you how far I've come from that day and I don't take a bit of it for granted...

Not a bad day on the water yesterday, 6 Yellowtails and a Mutton snapper, great eating. I also lost several fish, had a couple of big ones on that snapped my line.

All of them are Yellowtail Snapper except for one Mutton Snapper, can you pick out the Mutton?

So, the plan is to just keep this going! I'm here until the 23rd then I'll be flying directly to New York for yet another PET scan.

Pura Vida as they say in Costa Rica ;)

Feeling Better :)

2011-03-11T11:17:00.003-08:00

Really glad to say that I've broken out of my funk! Woke up this morning feeling much better, thank God :) I'm writing this from the beach and I think the sunshine is definitely giving me a boost not to mention I've discovered 5 hour energy and those things really work!

Big St. Pattys Day parade down on Atlantic Ave Tomorrow, supposedly the biggest st paddy parade in South Florida. Should be some great photo ops...

Erin Go Bragh!

2011-03-10T10:45:00.003-08:00

Not sure what to title this post...

It's been so nice to come down to the warm moist Florida air! As soon as I stepped off the plane, it felt like I just lathered myself in moisturizer or something, very nice. I'm sure my Michigan friends and family know what I mean by it being "dry" up there in the winter. I really struggle with chapped lips and the inside of my nose gets so dry that I get nose bleeds pretty frequently. I think these are exasperated by my chronically low platelet counts although I don't notice it down here like I said.

I've been struggling a bit with my energy lately. The last few days (starting in Michigan) I've really struggled to get out of bed and once I'm up, I just can't seem to get going... My whole body seems really sore too. It's almost like I have the flu without having the cloudy head. I'm getting a bit worried that it could possibly mean that my disease is growing, ugh. Fatigue is a symptom amongst many... It could be due to the fact that I was under a lot of stress last month for numerous reasons. I may have just worn myself out mentally and hopefully this time down in Florida (barring any disasters) will do me a lot of good.

I don't want this to come across as me complaining because I'm not. I'm really blessed to have this life and know there are a few of my friends and others that I know of who are really struggling right now. I guess I'm writing this to document this fatigue and be able to look back to see if it improves.

In any event, I'll know for sure what's going on after March 24th when I go to NYU for my next PET scan. I'll be flying there directly from here in Florida for the first time. I'm getting excited to go as it seems like it's been a while (last two times have been day trips and this time I'm staying for 3 days). I'm watching March madness right now at the Garden (which is just down the street from Hope Lodge) and just witnessed a great Big East tournament game with Connecticut beating Pittsburgh at the buzzer after Kemba Walker hit a last second shot!

I'm due back in Michigan on the 26th hopefully feeling more energized and knowing that I can continue on this trial.

I'm so close to being settled (relatively speaking) in my life!

Just like everything else, this too will pass...

Florida Bound!

2011-03-07T21:19:00.003-08:00

Well, I think I'm ready to give it another shot... The smoke and soot has cleared from my lungs and this time around is going to be so much better, I can feel it! Moving into my new place has been delayed until March 16th but my buddy Mike has offered to put me up until then so I'm all set. Don't have any concrete plans yet but know that it's going to be a blast! I've been busting my butt/back up here in the great white north the last week and ready for some R and R...

So, the plan is to stay down in Florida until the 23rd. From there, I'll be flying directly to New York on the 23rd where I'll be having another PET scan on the 24th. Hopefully I'll get good news and be able to celebrate a bit in Manhattan as it's been a while since I've stayed for more than one day there. I then fly back to Michigan on the 26th where I'll be permanently moving into the new place.

Things are almost in place...

I like staying busy even though it's exhausting. I've been getting to bed earlier and waking up earlier which seems good. I think staying physically busy for most of the day has been helping me sleep too (not to mention having the back pain under control of course).

On the surface, I guess you could almost say things are normal, ha....

By the way, just wanted to wish my Mom a happy birthday! We went out last night and had a really good time at this great restaurant once they got their act together. I'll miss the family while I'm gone (not to mention Chili).

They were 45 minutes late on our reservation and it took a relief waiter but the food was good and we had a fun time :)

Also, congrats to my step bro Kenny and his wife Joslyn on their new baby Ethan Michael Miramonti!

If at first you don't succeed...

2011-03-03T14:34:00.003-08:00

You then run up and down seven flights of stairs!

I arrived for my blood check in Detroit yesterday (in between visits to New York) and was feeling confident - almost cocky - about hitting the 50K platelet count necessary to continue on the clinical trial. I mean, I've done the pineapple now three times in a row without fail so why would this time be any different right? Well, I guess that's what happens when you get cocky, you get a platelet count back of 44K, yikes!

Dr. Ramchandran, to my dismay, was really cavalier about the results, ugh. He had no idea of the history I've had with low platelets and how we dealt with it at NYU. So, of course he gave me a blank stare when the first thing I asked him was where the nearest stairwell was! Even after he responded back by saying they're down the hall, he had no idea that I was going to get my blood tested again, today, and was actually amused when I told him about how I've been able to get my plates to jump 5-7K after getting my heart pumping. He was just telling me to come back at the end of the week or whatever... This wasn't an option as being on a clinical trial you have to adhere to the schedule of the cycles and I was determined to keep this going on time...

So, I ran down the hall, found the stairs and proceeded to run up and down over seven flights. By the end, I was totally winded and went into blood draw wheezing like an asthmatic!! The nice lady drew my blood again and after a two hour wait for the results, sure enough the new count came back 52K!! Yesssss ;)

With this great news, I was able to take my SAHA again last night along with a Naproxen to calm down my back pain and enjoyed my first almost full nights sleep in about a week with little back pain.

Next time, I'm going to make sure to do the pineapple and get my blood flowing and hopefully won't have to deal with the stress again...

On another note, I just wanted to request and send out some prayers and good vibes for my friend Lee in L.A. who's dealing with a Glioblastoma brain tumor. Lee and I were diagnosed at the same time and unfortunately, a suspicious growth has turned aggressive and the doctors want to get him on new chemo (along with some he's had before) to try and stop it in it's tracks. I guess he had a major seizure earlier that he's still trying to recover from. I know what these seizures are like as my sister deals with them on occasion as a side effect from her beating brain cancer (Glioma) and subsequent resection of the scar tissue left behind.

The talented Mr. Lee McPherson

So Lee, know that I'm rooting for you and saying prayers and sending good vibes buddy. You can do this man!! If you'd like to leave a positive comment, you can find Lee's blog in my blog list under One Quarter Blind...

Chris

Ode to Chili!

2011-02-26T21:58:00.003-08:00

This might be a corny post but I don't care ;)

Well, as crazy as the last few weeks have been, I have to say that no matter what happens, my buddy Chili can always put a smile on my face :) It's amazing how dogs seem to know what you're going through and how nurturing and calming they can be. I used to write a lot about Chili Dog, especially when we went on that month plus road trip around the country. There would be hours on end where I had no cell reception and the only one I could talk to would be her! Have to say, I've spent a lot of time with baby girl... I now realize more than ever how calming it is to have her around. I can't bring her down to Florida with me as I don't want to subject her to the baggage compartment of the plane plus the expense would be huge. She gets to stay with my Mom and the gang in Michigan where she is very well loved and taken care of which I'm grateful for. However, there is a void down in Florida that really just struck me. It's pretty strange how we as humans get attached to our dogs...

I remember watching this documentary on the relationship between Dogs and Humans and remembering how they said that out of all the animals in the world, no other is more in tune with humans than the canine. The bond goes back 1000's of years and it turns out both humans and dogs have physically evolved because of each other. In fact, they mentioned that if it weren't for this relationship (the role of dogs in the lives of humans) we'd all still be hunters and gatherers! (their role over time was to obviously help herd animals so we could start living sedentary lives) In turn, as we relied more and more on dogs, they started relying more and more on us and thus the symbiotic relationship. Of course cats are domesticated but they're in no way as in tune or at attention with humans as dogs are. I remember the narrator describing a computer study of dogs' eye movement as it's owner would present different emotions and how the dog expressed a different eye pattern (if you could call it that) depending on how the owner or human was acting. No other animals have been found that express this unique connecting quality, even dolphins (which are still incredible because they've never even been domesticated).

Anyway, I just thought I'd devote a post to my buddy Chili Pepper as she's always here for me through thick and thin and no matter what, always understands!

For some reason even though her name is Chili, I like to call her Fozzy, as in Fozzy Bear from the Muppet's, ha! She obviously needs a haircut but holding out until right before I leave for Florida again. This time I'm driving down so I can move into my new place there and thought I'd bring her with me. She digs the beach from her days in L.A.!!

So with that, I'm gonna crash out and look forward to a great day tomorrow. I found a guy to do my wood floors Monday at the new house and tomorrow I'm going to be prepping for painting once he's finished (per his request, paint on the oak makes it more difficult to sand). Once the finish is dry, I'll be able to hopefully move in by the end of the week, yeehaw! Moving they say is stressful but in both of my cases instead a symbol of starting fresh and on the road to feeling useful again.

Not to mention and most importantly, a way to keep my mind off the setbacks and a way to look toward the future and good things to come :)

Happy Sunday Y'all,

Chris

Good news bad news...

2011-02-25T09:43:00.004-08:00

Well, I must say even with the freezing cold weather and all of the snow, it is comforting to be back "home"... It was quite the task shoveling all of that snow yesterday but thankfully today we didn't get as much as they were forecasting. It is so nice to sleep in my own bed again and be able to take a hot shower! I'm getting ready to go grab Chili so that should be nice too :)

Unfortunately however, I did receive some bad news today regarding the promising RIT clinical trial for EBV positive Hodgkins survivors. Apparently, the tumor block I sent to Baylor tested negative therefore eliminating me from the trial. I'm having a bit of a hard time with it right now but like everything else it'll pass and I'll continue to move forward. Dr. Bollard who is heading the study did say they are working on a vaccine for patients who are EBV negative but not sure if and when that would ever be ready and if so, what the efficacy would be.

So, just going to keep my chin up and keep the faith that the SAHA will continue to work and perhaps something else will come into the pipeline once it stops working.

My skin keeps getting thicker and thicker.

Again, more reason to be mindful of the here and now and squeeze every good drop I can out of life on a daily basis.

Cheers!

Chris

Update: Just heard back from Dr. Bollard, she mentioned to me the EBV negative killer t cell study may be ready to try in 9-12 months. Like I said, I have no idea if it will have the effectiveness of the current trial which has been developed over the last 10+ years. Hopefully I can buy another year or more out of this SAHA and keep my fingers crossed the EBV negative trial has the same effectiveness if it ever gets released...

Dust is settling...

2011-02-22T20:00:00.003-08:00

All I can say is this has been a dubiously surreal last couple of weeks... I'm preparing to fly back to Michigan tomorrow in what I hope is a fresh start.

I'm going to start by attempting to clear all of the snow that Michigan once again got pummeled with from my walk/driveway. Once I clear a path, I'm going to start getting the new place ready to move into by painting and refinishing the floors. I look at this place as a blank canvas ready to be transformed into a work of art with the experience I've gained re-modeling two homes previously. It's going to be great to feel useful again and I can't wait to get started...

I also found out that the place I was hoping to transition into down here in Florida will be ready to move into first of March. After this week of sleeping on different beds/couches, the timing couldn't be more perfect. I really feel for people/families who have lost things in a fire or other disasters. It's a pretty helpless feeling...

I'm grateful that I've been feeling reasonably well physically despite the stress I've been under. Right now, my number one goal is to rid myself of any unecessary anxiety so that my body can continue to work with the SAHA to keep the cancer down. I have my next scan coming up on March 24th at NYU. I really feel like this is a big one. If things go well, it will mean I'll get at least a year out of this trial, something I never would've fathomed as I barely shuffled into Dr. O'Connors office last April. How much more I'll get from this trial, God only knows. I've sent my tumor block to Baylor University to be tested for EBV virus and the possibility I'd be eligible for the RIT trial. I should find out the results by the end of the week. Prayers and good vibes are welcome for me to be EBV positive here! If I'm not eligible for the trial, I'll just continue to hope the SAHA maintains it's effectiveness and continue to try and live a healthy life both physically and mentally.

I'm cautiously optimistic about my future for the first time in a long time...

Fire in the hole!

2011-02-16T20:31:00.005-08:00

I'm not really sure how to start this post. I was really busy in Michigan catching up on removing 6+"s of ice from my porch driveway, moving stuff over to the new place, picking up/dropping off Chili, cleaning my place, blah blah blah. Combine this with the temperature being in the teens, you could say I was more than ready to come down to Florida...

So after arriving yesterday afternoon, I dropped off my bags and went over to the pool to soak a little sun and go for a swim. I then went back to my place to grab my bike as I had the urge to go for a short ride. I was gone for around 25 minutes.

When I came back, I went into my place and it was all black. I then noticed a heavy smell of smoke and tried to walk in but was overwhelmed immediately. I then ran out to exhale and went around the building to my bedroom window. I looked in and couldn't see a thing, I was totally freaking out at this point... Knowing that I had my medication, camera, computer, ipod, phone, etc. in my backpack which was right by the window and not being able to get the window open, I decided to kick it in to try and salvage what I could. Hindsight and the subsequent lecture by the fire department chief tells me this could have been a bad idea. Thankfully the fire that was started snuffed itself out quickly (room ran out of O2) because the windows were closed and I closed the door to my room when I left. I got a new mattress before I left last time and the old one was leaning against the wall near where I keep my bike. When I took my bike out, the mattress must have been partially leaning on it and without knowing, it must have fell over onto a lamp I also keep in the corner. The blaze was brief but fierce...

This is the corner where the fire happened. I had a pretty cool Hector Salas reproduction over my bed that I found at Faith Farm which is now only and ashen outline. The pile of ashes are from the old mattress. The new mattress, which I only had a chance to sleep on once, was made of memory foam and remarkably fire resistant. It was only slightly melted (but still had to be thrown away like most of the other stuff in the room, i.e. tv, furniture, bedding, luggage, etc.). I did manage to salvage most of my clothes/shoes and my golf clubs and classical guitar are charred but still usable.

You could see how hot the fire got by the remainder of the plastic shower curtains as they melted up. The tub was around 18-20 feet away from the fire...

I guess you could say this is a bummer...

However, of course, it could have been much worse. If I had my door open, the fire would have kept growing and probably burnt the rest of the place down and most likely the other 3 units in my building.

I was planning on moving out of this place and into another so I guess this just sped up the process...

It's crazy how powerful the smell of the smoke is (probably from plastic burning) and how permeating it is. I'll probably have to throw more stuff away but doing my best to salvage what I can.

Unfortunately, I didn't have any insurance, big ugh...

It was nice though when one of my neighbors came over with the number to the local Red Cross office and within a couple of hours of my phone call, two volunteers were at my place. They were able to get me a hotel for three nights and gave me a little money for some food and essentials.

Never thought I'd be the recipient of help from the Red Cross. What an awesome operation they are and would think a great organization to donate to...

Anyway, that's my most recent drama! You know I couldn't go more than a couple weeks without some major catastrophe, ha!

Amazing how you can keep things like this in perspective and even marginalize it compared to the all the cancer stuff. I'm sure prior to cancer I would be totally depressed about all of this but truthfully now, the only thing I am is tired. I'm going to try and get a nice sleep here at the Quality Inn in Boca and get ready to tackle tomorrow.

I think I'll go hit some golf balls with my ashy clubs or take a bike ride down to the beach.

Life goes on... ;)

New York Minute...

2011-02-10T21:09:00.002-08:00

Finally had a smooth trip to New York, thank God. That is if you count having to remove around 18 inches of snow from the car at 5:30 in the morning smooth ;) I can't believe how cold it is in Michigan! I went from 77 degrees to zero overnight, shocking. It wasn't as cold in New York today thankfully though as I have to walk from Grand Central to NYU and back on these day trips. I think they'll probably get our deep freeze tomorrow though so heads up New York!

I ate my pineapple again and barely squeezed by once more with my platelets being exactly 50K, whew!

Also had a chance to meet another Hodge Warrior today, Tim. I was waiting at the elevator when this young guy looks over to me and asked me if I was Chris and I said yeah. Turns out Tim's mother messaged me a while back after finding my blog. I was embarrassed that I didn't remember our exchange but felt better after Tim mentioned that my blog helped him out which was cool. So, I've got a new buddy in New York now and can't wait to hear some good results as he just started the same trial I'm on but with a much higher dose of vitamin B3. It's funny but Tim's pretty much followed the same path as me treatment wise except he's had an allo transplant compared to my tandem auto transplants. It was cool exchanging war stories with someone who's gone through the same thing and talking about all the other stuff that comes along with having refractory cancer. Always good to make a new friend...

So, that's all I've got for now. Need to grab another blanket and bundle up in this drafty room... Hate to say it but I can't wait to get back down to Florida! This cold just aint for me anymore...

Adios

Chris

So Long Kirsten :(

2011-02-07T18:32:00.006-08:00

Kirsten on her and Ian's restored Boston Whaler somewhere up in the beautiful Northwest in Canada. I think they completed it last summer. Glad she was able to enjoy it for a while....

Today has been a bad day. I found out this morning that my friend and fellow cancer warrior Kirsten has passed away after a courageous battle with refractory Hodgkins. Her body could no longer take the therapy to control the disease as her blood counts stopped cooperating. I am pretty numb right now and have been all day.

I'm really at a loss as to what to say except my love and prayers go out to Kirsten's Mom Susan and Ian as well as the rest of Kirsten's family and friends.

I've missed Kirsten's interesting and insightful posts on her blog about this disease as well her outlook on life. She inspired me to seek out ways to be at peace with my situation and in her spirit will renew this ongoing quest. I also admired Kirsten's talent as a writer and photographer, both of which she was very talented. I felt like we had a lot in common. Like I said in my previous post, when I lived in Seattle, I had a chance to meet Kirsten and Ian in person when they were in town to consult with the SCCA (in Seattle, they lived 2 1/2 hours away in Vancouver BC Canada). Jackie and I went to pick them up at their hotel and took them around the city before having lunch and dropping them off at Bumbershoot music festival. Kirsten definitely tried to live by planning cancer around her life which is the only way to go.

I will miss Kirsten's calmness and dry wit. She was also very strong. As I've written on here in the past, the side effects from the therapy sometimes are as bad if not worse than the disease itself. I know how uncomfortable she was but yet still seemed to power through and have a great attitude.

I will miss our e-mail exchanges. She would always take the time to write something interesting and funny...

This is all so shocking right now...

I've got to try and keep my head together. It's impossible not to think of the same thing happening to me in the relatively near future. I worry about my platelets. I'm barely making the threshold each time I have to do blood draw. Is this going to be a chronic problem? (actually it almost already is). Once your counts don't recover on their own anymore, it's really challenging to beat back the cancer.

I don't want to make this about me though because today is Kirsten's day. She was only in her mid 30's for God's sake. I just wish she could have held on a little longer as perhaps something would have come out that could have saved her. I know how tired she must have been though and feel comforted knowing that she doesn't have the awful anxiety anymore, not to mention the physical and mental pain that she was in.

It's really tough to lose one of your heroes. I know all of us in the refractory group keep tabs on each other and do out best to try and support each other.
Even though Kirsten hadn't been as active in the end due to her constantly feeling like crap, she still took the time just last week to explain what was going on with her and seemed to be optimistic about getting through this, ugh.

She had a great sense of humor, such a nice calmness to her and was very kind. Again, if you'd like to know more about her, please check out her blog cancersmancer which can be found on my blog list on this page.

I will miss her very much.

I'm going to try even harder to make every minute of this life count as it's so precious.

Here's to you Kirsten, my friend. May you rest in peace.

Chris

Lighting a Candle for Kirsten

2011-02-05T16:03:00.006-08:00

Kirsten and I at the Honey Hole in Seattle after her and Ian's visit

Sending light, love, prayers and good vibes to my friend Kirsten. May you and your family find peace and comfort knowing so many people are thinking about you...

Please read Kirstens blog "Cancersmancer" on my blog list. She is a great gal who I've always looked up to and admired.

Cancer blows :(

What a difference a year makes...

2011-01-29T21:38:00.003-08:00

Portuguese Man Of War hoping to get washed back out to sea... If stung by one of these things, apparently it feels like a cigarette being put out on your skin, yikes!

Still can't get over how much better I'm doing compared to being down here last year! Things are going pretty well, back pain is under control, energy is decent and I'm keeping myself busy with mostly fun stuff :)

I guess you could say life is good at the moment :) I feel really blessed...

To my friends (and families of those friends) who are having a hard time right now, you are constantly in my thoughts.

Chris

Sunday's thoughts...

2011-01-23T21:45:00.004-08:00

Just lying under my covers trying to stay warm on a freezing Sunday night. I've been trying to find and seal off all of the drafts in this place but since it was built in 1926 and it's on a crawl space, there's no way to make it cozy in here without blasting the furnace.

With that, I'm excited to say that I'll be moving into a new place in about a month or so! I'd been watching this house 8 doors down on the other (park) side of the street. It was up for short sale which seemed like forever and after calling the agent, felt I might be able to offer a super low price as nobody had even been over there to see it because of picky and difficult renters. Since I lived right down the street and not working, I was able to arrange a look as soon as the tenants were good and ready. The bank and I traded offeres back and forth before we decided to close. The place needs work but not a ton and there's some nice character to it. Most importantly, it has a basement and as a bonus, an upstairs (the two bedrooms and bath are up there). The original oak floors are intact (but need sanding and refinishing) and it needs some remodeling but it's no big deal to me as I've remodeled a couple of houses already.

It's unbelievable to me that I was able to get the house for less than the average price of a new car! I decided to cash in one of my 401K accounts thinking that the money wasn't doing me a whole lot of good sitting there and knowing I couldn't take it with me if something were to happen.

I'm so excited to get started on it! It's great because during the nice months, I can take chili out to the yard then open my gate at the back of the yard then let her go run around in this huge park which the house backs up to. There's always soccer matches, there's a basketball and hockey court as well as picnic tables and BBQ's. I've always wanted to have a big softball game / party and think I might try and make it happen this summer. Who knows, maybe I can even figure out a way to make it into a Hodgkins research fundraiser...

So, obviously I'm excited about this development! I'm also excited to say that I'm leaving this cold again and headed down to Soflo. Part of me wants to stay here so I can get started on all my projects but my rational side kicks in and tells me that the Vitamin D from the sun and the beach will continue to aid in my healing and the house will be there when I get back!

As I promised a few weeks ago (now that I know this has a happy ending), I wanted to tell the story of my narrowly averted tragedy about two and a half weeks ago. I briefly mentioned in a previous blog about me not being able to take a trip without something crazy happening. Well, this time it wasn't me but Jackie's dog Gomez who would wind up in the precarious situation.

It was super early in the morning, something like 5 a.m. It was my last day of watching little G Money and just had to get to the airport. What I didn't realize is that I left around 6-7 of my Dronabinol pills on my comforter as I was packing for my trip. I was going to give these couple of pills to a friend of mine as they help her sleep. They're prescribed to me to help combat nausea and to help stimulate my appetite (both side effects from the trial I'm on). The only thing is they make you feel pretty loopy for the first hour or so after you take one. This makes sense since Dronabinol is actually synthetic THC without all of the different chemicals that are found in Marijuana (i.e. canabinoids). Well, because I was so drowsy, I forgot that I had them laying on my bed and went to sleep without putting them in a bag to leave on my counter. Of course, as per ritual, G jumped up on the bed and crashed with me. Little did I know that he was going to take the trip of a lifetime right after that! That's right, little G Dog decided to eat 6 of the 7 pills. I'm not certain he ate six, it's just that I could only find one on the floor. So of course, with it being 5 a.m and realizing what just happened, I completely freaked out. I mean, the dog only weighs 14 pounds! If you do the math, it's like me taking around 350 of those pills, oy vey! I couldn't even begin to imagine what might have been going on in the poor little guys mind. So, of course, it was time to go to the animal hospital where they gave him charcoal in his blood and gave him stuff to make him empty his bowels... With that, there was no guarantee he was going to make it as the vet told me he took a "highly toxic dose". I debated canceling my trip but Jackie was very understanding and told me to go anyway and we'd just keep in contact over the phone. I was a nervous wreck getting on that plane...

When I got the report that he was mostly out of the woods it felt like a thousand pounds had been lifted off of my shoulders! The G Man had to walk around with a lampshade for around 24 hours and was probably out of it for a few days after but thankfully made it out ok! The joke about Gomez now is that he's not a dog but a cat with 9 lives. More like a Dat I guess you could say. After this episode, he's pretty much on his 4th life after almost dying from a pneumonia when he was first adopted then the whole getting hit by a car story while I was watching him previously. That's right, I've almost killed the most luvable cutest dog ever, twice, yikes! To think, I don't know of too many people that love animals like I do plus he wasn't my dog which I think maybe makes it even worse. I had just gotten over all the chili trauma where she got her paw slammed in a trunk but it was still pretty fresh in my mind.

All's I have to say is that if only that dog could talk, the stories he'd be able to share, ahh.... I can say that he is one tough little hombre both physically and now obviously mentally. I tried to put myself in Gomez's spot thinking of how I would feel after eating 350 of those pills and lets just say it's a place that I never want to visit!

"Where in the %$#&*&@ am I"? "Why all of the sudden do I crave Doritos and have the urge to listen to reggae" (thinks Gomez). Poor little guy...

On to a bit of bad news (for real) unfortunately... I found out last night from my buddy Dan that his friend (and a friend of mine, although I didn't know him as well) died of a heart attack. His name is Ivan and I wrote about him last year. He was a great guitar player / singer / songwriter. He was also a great guy, ugh... I wrote about how Ivan had serious heart problems back then. We used to talk about how each of our lives were tenuous because of our health issues and shared a zest for enjoying every moment. Fittingly, Ivan died doing something he really loved and that is disc golf. In fact, he had started his own disc golf merchandising company and from what I knew, was doing fairly well with it. I'm bummed that I'll never be able to see or talk to the guy again, this sucks...

Talk about being full of life... We would sit outside at Danny's quad and Ivan would just belt out tunes of his own or covers like the Gypsy Kings or other cool stuff... He was way too young, very sad...

Cheers to Ivan and Gomez! I hope you rest in Peace Ivan, God bless ya brother...

Your buddy Chris

Rockin 54,000 Platelets!

2011-01-20T23:37:00.002-08:00

That's right, scored 54K on the first try today, yee haw! Of course my new secret weapon, Pineapple had a little to do with it. Yes indeed, pineapple! I heard from the Reeds that Mike did the same thing before his blood test and it got him over the hump too. I've always loved pineapple and now I love it even more ;)

The nicest thing is once I found out they were at 54K, I immediately reached into my meds and grabbed a couple of Naproxen and within an hour, my back was feeling much better. In fact, I anticipate being able to sleep most of the night tonight without being awaken by sharp pain, awesome!

So, it was nice to see the crew at Karmanos in Detroit today. When I was getting my blood drawn, one of my friends who used to always bring me newspapers, stuff to drink, etc. (and always asked me when I was going to get married ;) gathered up all the nurses that used to treat me and they all came in the room to say hello. It was a very nice moment and made me feel good that they remembered me and were so glad to see me. It's gotta be weird not knowing if a patient you used to treat is still out there kicking and can see why they would be happy to see one of theirs doing relatively well. Like I've said before though, all of the nurses at Karmanos (especially the soul sisters) are so awesome and can always put a smile on my face :)

I'm glad I get to go back to Karmanos in between visits to NYU now :) Even though it may not be the best cancer center in the world (although it's surely far from the worst) the warmth of the staff there is enough to make you look forward to visit which says a lot...). Plus, it gives me an excuse to go downtown Detroit which I always enjoy.

Anyway, that's a quick update for now. Time to start cycle 14, amazing...

Gotta keep it going!

Catchin Up

2011-01-18T19:43:00.003-08:00

I Haven't been overly inspired to blog lately... While I'm having a nice relaxing time down here (I went on my first bike ride today in over a year :), I'm pretty exhausted from not being able to sleep a whole lot the last few nights. My back is pretty messed up, to the point where it's almost impossible to get any quality sleep right now. I take pain meds before bed but to have any effect or any chance at R.E.M., I have to take double the amount I would normally take. The result is something that resembles sleep but is more like a half conscious drug induced weird feeling (don't know how else to describe it). I can't take the naproxen because of my platelet count problem and a pending blood draw this Thursday. It's quite the conundrum and hopefully will be better by the time the weekend rolls around.

Now that I've vented, I just remembered a story I saw on the sports recap last night. There was this lady at the Green Bay airport who happens to be a cancer survivor in treatment. Apparently she is a major Packer fan and thus a big fan of their quarterback Aaron Rogers. I guess he was coming into the airport to travel to Chicago for the game and she was standing there with her bald head and a pink jersey on, pretty obvious she was battling cancer. As she asked Rogers for his autograph, he pretended not to see her and walked right by her. On it's face, the video looks pretty bad. Here's a guy who's supposed to be an icon or role model (whatever) and he disses an obvious cancer survivor and it's all caught on tape. I'm not going to bash him as he's only human and maybe he was just in a hurry... He's not obligated to sign anything obviously. Turns out he actually signed some stuff for her in the past (although the story did mention how other players did stop to sign autographs for her moments later).

I think the media really blew this thing up as our society seems to pay more attention to the bad (or perceived bad) things people do as opposed to the good. I guess drama sells...

When asked how she felt about what happened, her response was one of compassion and understanding for the quarterback. She actually felt bad that everyone was bashing the guy. She said she doesn't want anyone to feel sorry for her and didn't expect special treatment.

I have to say that I feel the same way regarding expecting special treatment and people feeling sorry for you. I think most cancer survivors will tell you that they don't expect special treatment and definitely don't want people to feel sorry for us.

However, I must say (and sure the woman would probably agree) that it is nice when people do recognize what you go through (when dealing with cancer) and do make the effort to try and understand what it's like. It's kinda what separates the people that really care about you from those that are just "passers by" if you know what I mean.

I guess I'm writing this post for a couple of reasons. The first of course is to vent about this awful back pain (because there's not a whole heck of a lot else to do about it). Secondly and most importantly is to again thank those of you who go out of your way to "understand" and support my struggle and the struggle every cancer survivor goes through at some point.

So, because I didn't know if I was going to have to go to New York when I booked this trip, I'm leaving tomorrow for the Michigan tundra. Nice thing is, I get to come back down next Monday (thank God for Spirit Airlines $9 fare club!). I'll be here until Feb 10th where I'll then fly to New York for my required 6 week clinic visit.

The saga continues, ha!

Chris

Time to think...

2011-01-13T21:51:00.005-08:00

So, it's been an enjoyable relaxing time in Soflo so far. I'm really grateful for the sunshine hearing about all of the snow all over the country...

Been feeling relatively well (think the nice weather helps this). If I could only get rid of the little knife that is constantly in my back. I don't think it will ever go away so I'm trying to learn how to be friends with it. It's tough because we really don't get along and sometimes it makes me grumpy. Not to mention, sometimes it causes me to lash out when it's probably best to keep my mouth shut. It's a constant struggle that I'm always trying to stay on top of. I think I'm going to give my little buddy (sometimes buddy's in my para-spinal area) a name. Something like Dick, Asshole, Jackass or even Shithead (stole that from Steve Martin's dog's name in "The Jerk", that movie was hilarious but I digress).

It is what it is however and I'm still truly blessed to be living the life that I am right now.

I don't know what it is but every time I come down here during season, I feel like an old fart! Everywhere I go during the day, I'm surrounded by retirees. It's pretty surreal. I went to this place called Faith Farm Ministries today as it's a huge resale complex run by people who have given their life to God (at least that's what they say) and those seeking God after prison or rehab. These people get to live on this rather large complex out in the country in exchange for work and of course good behavior. Anyway, they have an amazing inventory of resale clothing, furniture, appliances, etc. I'm in the market for a little microwave and always looking to add to my art collection with cheap finds. The only thing is I have to fight off all of the geezers! (When I say geezers, I mean the not so cool old folks. I know plenty of hip old folks!) Anyway, these people are really aggressive not only trying to get a parking spot in the lot but trying to look through some of the paintings that were donated. I had this lady grab something right out of my hand! I liked this little oil painting and before I could blink, the little old lady snatched it right out of my hand, lol! Since I was on her turf, I just put my hands up and said "it's all yours!". I then had this almost incoherent old guy come up to me a couple of times within 5 minutes asking me "where the pens were". He must have thought I worked there, lol! Who goes to a resale shop to buy pens? Sometimes I feel like I'm in the twilight zone down here but I roll with it and have fun with it.

So, I've been trying to do my laps in the pool as I haven't looked for a place to take yoga yet. I went and bought some goggles and they make all the difference in the world. That is, I can swim a straight line now whereas before I'd be zigzagging as I did my laps with my eyes closed! Apparently, doing laps in the pool is also a popular thing for the retired crowd so the goggles are necessary when I have to share the pool ;)

I forgot to update on this but I was finally notified that I can stretch my New York visits out to every six weeks!! What a relief both mentally and for my pocket book. I do a lot of walking when I go to Manhattan and after my last experience with the snow not to mention the craziness at La Guardia this is a major blessing!

That said, I'm due back for a clinic visit Feb. 10th. We've decided to just let my body tell me whats going on and take a little break from PET scans. You know PET scans can't be good for you when they tell you to stay away from children and pregnant women for 24 hours...

So, that's pretty much it for now. Just doing my best to get through winter. I feel bad for my fellow Northerners who have to deal with all the hassle of cold weather and snow. I think the people that have it the worst are those who don't have a garage and have to scrape their windshields in the morning or even worse, walk to work. Believe me, I don't take wearing shorts and flip flops for granted and hope I never have to deal with the cold again with all the crap my body has been through.

By the way, I wanted to mention something exciting that my friend Marsha has been talking about on our Hodgkins board. Apparently, there is a treatment out there right now that's been showing good success in refractory patients who carry the Epstein Barr virus (one of the only known possible causes of Hodgkins). I need to get a tumor sample over to Baylor university where they apparently take a chunk and test it. It takes six months for the test results (they have to grow something in a test tube). I really hope I have the virus as this could be my next step.

Well, that's all I've got for now. I've been holding off talking about politics and social issues lately in the spirit of keeping things lite. That's right Sarah Palin, I'm giving you a free pass on the whole cross hairs/reloading thing in the wake of the Arizona shootings. To think, this lady could have been our vice president...

I couldn't resist ;)

Peace,

Chris

Dust is Settling...

2011-01-09T21:54:00.008-08:00

Hello Everyone,

Sorry for no posts for a while, I've been going non-stop since early last week and just now getting a little breather.

I know I never mentioned this but I was able to continue on the trial after getting my platelets to go up 12,000 points in one day! I'm not going to swear by this yet but this is the second time I've eaten a bunch of pineapple before a blood test and had my platelets go up so dramatically. I mean, never before have they gone up so much in one day. You know that for sure I'm going to be eating at least a pound of pineapple before every future blood draw (except the days where I have to fast for scans).

So the holidays were great, had a nice mellow new year and think I did my birthday up pretty well. It all started at the last Lions game where my buddy and I got some cheap seats and snuck into club level. They convincingly beat the Vikings for their fourth straight victory to end up the season. With a couple of breaks here and there and if we were able to have our #1 quarterback available to the whole season, I think the Detroit Lions would have made the playoffs, that's right, the f'n playoffs! I am going to stick my neck out and say that next year, even if Stafford doesn't come back, we are still going to make the playoffs and maybe make some noise. I just watched Green Bay beat Philadelphia and we just beat Green Bay and gave Philadelphia a great game. I also watched the Jets win and remember we should have beat them too... The Bears who are also in the playoffs should have lost to us twice! Let's just say I'm really excited for next year and I haven't been able to say that since Barry Sanders played for us.

My actual birthday was really nice. Unfortunately, I don't have any pictures to post yet though... I met all of my family at this restaurant called Tin Fish in Macomb Twp. I've never semi planned my own birthday party before but wanted my family who has been so supportive of me through my hard times around. I truly didn't think I was going to make it to 40 when I was going through my toughest times and it seemed like a big deal. I requested to my Mom to spread around that I didn't want any gifts but my family doesn't roll like that! All I can say is that to all of you who put something in your card, I am forever grateful and plan to use the money to take a vacation to Hawaii or somewhere exotic! It'll most likely be Hawaii as now I have two people to visit, cuz Jeff on Oahu and buddy Mike on the big Island (as of a few days ago).

So the next morning I had to pull myself together and pack and catch a 10:30 flight. Because it was a flight, there had to be a near tragedy but I'll save this story for another time because it would take an entire blog to explain what happened...

Glad to say that I did make it to Delray however and it couldn't be nicer! I'm entertaining a buddy and it's always nice when you have guests and the weather cooperates.

Made a trip down to South Beach Miami where everything in colorful, even the life guard shacks on the beach!

Lotsa Flavah in South Beach :)

Everybody is so festive (tasteful body painting show at Clevelander Hotel)

Lots of interesting characters everywhere (quite a contrast to the above pic!)

Had lunch at the Clevelander Hotel and watched a little football.

An ants view from the beach!

This week is my week to start putting my ducks back in a row and plan for 2011 (the best that I can).

Looking forward to hopefully a great year!

Cheers :o)

Chris

Lordy Lordy, look who's...

2011-01-05T15:13:00.002-08:00

Yep, that's right, the big 4 oh today, yikes! Sorry I haven't updated in a while. I plan to do so when I get some free time down in Florida.

I hope everyone had a great holiday and Happy New Year!

Chris :)

Believe!

2010-12-28T16:21:00.013-08:00

UPDATE 12/29, 2:07 p.m. : Platelets 52,000!!!

"Believe"!! Side of original Macy's

Winter wonder land at Macy's in Midtown Manhattan :)

Just got back to the room, whew... I don't know why but scan days lately have been crazy...

It all started when I woke from my "nap" at 4:30 this morning. It was dark in my place and somehow I managed to step on a trim nail that was sticking up through my floor (head side up). It went into my foot all the way to the bone (over an inch long). When it first happened, I didn't feel it because of the permanent nerve damage and numbness in my feet. I knew it was bad though when I looked down at the nail to see how much it was sticking out of the floor and the blood that started flowing out of my foot. Definitely tetanus shot worthy... I was able to stop the bleeding, cleaned it up, bandaged it and thought it might be ok as it was sore but I was able to walk on it. Boy, has that changed in just over 14 hours! My foot is absolutely throbbing right now and I can barely put any pressure on it, ugh...

This Dog is definitely barking! They ended up giving me a tetanus shot

So, of course the day that this happens, there are almost arctic like conditions in Manhattan! They got pounded here with something like 30 inches of snow in the last day or couple of days. I'm lucky my flight got here relatively on time. As you can imagine, with a super condensed metropolitan area like New York, there really aren't a whole lot of places to put the snow. As result, a lot of the streets are literally walled off with snow. I was gimpy already but having to climb over a snow pile holding on to my bag with just jeans on and non winter boots with no gloves it was a bit challenging to say the least. My walk was from Grand Central Station to NYU Langone is normally around 15-20 mins. I'm not sure how long it took me this time but can confidently say it took a little longer than that this time ;)

This bronze sculpture is around 6' tall. The restaurant (I think the thirsty dog or something) is right next to NYU

Feel bad for whoever owns this bike!

Trying to make a path on the sidewalk. Where the streets are crowded with people, it got a little hairy trying to walk...

Eventually I made it and my foot by now was not only throbbing like mad but soaking wet and freezing cold, fun stuff!

With all of this happening, I was pretty proud of myself for getting there. My nurse was telling me she had patients who lived in Brooklyn canceling their appointments and here I came all the way from Detroit!

So of course with the lack of sleep and the foot trauma not to mention the walk I was completely exhausted when I arrived at NYU. It actually worked to my benefit as I slept all the way through the 45 minutes you have to sit motionless waiting for the radioactive sugar to uptake through the body (if you move your muscles, the dye will go to those muscles and not potential cancer sites). I also slept all the way through the 45 minute PET scan that is normally pretty uncomfortable having to hold your arms over your head the entire time.

So, to the good news, my disease is stable! There were modest reductions in some areas (less than 10% I think) which I'll take as my tumors are considered relatively small right now. So, since the start of the trial in April, I have a total reduction of 5%, pretty much exactly where I was when I started. The difference between now and then is that at least now I have some quality of life beyond the normal fatigue and pain issues. You know what, I'll take it! If I can keep things the way they are for a while, I'll be a happy camper :)

There is one caveat however (it's never easy). My platelets came back at 41K and 40K on both tests. I need to be at 50K and until then, I can't continue the trial. I've been through this before though and hopeful within a couple of days I'll get back up to 50K. I'll be going back to NYU tomorrow (probably take a cab this time ;) for another platelet check. If they go up (which I think is a long shot for one day), I'll get my pills and plan to start cycle 13 on Thursday. If they don't go up, I'll have to get a STAT blood check run in Detroit on Thursday. Amazing how all of these "little things" add up to dent your pocketbook and create additional stress. It's the new norm for me however and anybody out there that's battling this crap knows that you just learn to roll with it and move on until the next roadblock presents itself. I'm glad I played sports when I was a kid as it taught me competitiveness, an essential element that you need to to battle cancer. A lot of this competitiveness (which like I said I'm glad for) also came from my Dad who I used to battle when I was a kid on the backyard basketball court, the table hockey and ping pong table in the basement in Detroit and the pool table in the basement in Warren. Can't forget about the golf course... Thanks Dad :)

Thinking of golf, I think I'm about due to get out and play a round. After this episode, I think I'm going to treat myself to a round when I get back down to Florida. There's a decent municipal course in Delray that was designed by Donald Ross and built back in 1923 that you can play for $25. It's pretty well kept and has some challenging holes. I'm going to see if they have a program like they had in Seattle at West Seattle Golf Course where you can volunteer to help around the course in return for range balls and free golf.

So, with that nice thought, I think I'm gonna wind this post down!

I'm gonna crash hard...

UPDATE, 2:48 A.M.

Just woke with awful pain in my back, ugh... Failed to mention that the PET report noted my worst spot, in the middle right of my back registered an SUV uptake value of over 16. This is the highest I've seen my SUV levels since the early days and probably the reason for the pain. In other words, this is where the cancer is most active (although relatively small) and must be right by a nerve center, ugh. Took more pain meds and going to try to fall back asleep. The foot is still throbbing but the back has overpowered even that, ugh. Hoping to get good platelet report so I can get the pills and start again tomorrow. Thanks for reading and the support :)

Chris

Christmas Wrap Up

2010-12-27T21:24:00.007-08:00

Just wanted to do a quick post to hopefully help me get a couple hours of sleep as I have to wake up in about 4 hours (4:30 a.m.) to hopefully catch a flight to New York's La Guardia airport. I'm scheduled to have yet another PET scan tomorrow to see what my disease is doing and if I can continue on the trial. It's pretty simple, if the targeted areas are larger or if there are new areas, I'm off the trial and it's a scramble to find something else. If I'm stable or better, I'm going to lobby to spread my visits out to every six weeks and let out a major exhale!

The holidays were a nice distraction from this I have to say. It was great seeing my Mom's side of the family on Christmas Eve and hanging out with Rich's side on Christmas. My Uncle Tom and Aunt Linda hosted the party on Christmas eve and everything was great from the food to the prayer said by my Cousin Jeff. He told a story about one of the third graders at the school where he teaches in Wainaie Oahu where he asked the kid if they were having turkey and all the normal fixings for Thanksgiving. The kid replied back, nope, just some Captain Crunch. My cousin being quick on his feet and compassionate replied back, so, is it the kind with the Crunch Berries?! I might have the cereal wrong but the moral of the story is we are very blessed to have what we have and gave perspective and appreciation to the feast we were about to have.

Speaking of family, it was also nice to see Jackie and Gomez! It was almost ugly as Chili got a little possesive of a giant rawhide and almost ripped G's little face off, yikes!

As I get older, I appreciate my family more and more. My grandpa used to tell me that friends may come and go in your life but the one thing you can always count on is your family. He was totally right (well mostly right) and I couldn't be luckier having the family I have. That said, I'm still holding out hope that someone who's in my family but hasn't been around or in touch for a while will realize the importance of family and will do the right thing and remember life is short and sometimes pride should take a back seat to wanting to work to fix problems that have been festering for too long. This person knows that I love them and wish them only the best. I truly hope that somehow this person will see the light and understand that sometimes you have to look at a situation/s through a different lens if the lens you've been looking through for so long has not produced the best results... Time will tell here...

So, I finally went to Yoga yesterday for the first time in a while. My friend Christa was nice enough to hook me up for a free month unlimited at this great studio in Birmingham. I've been to really soft Yoga classes at the SCCA in Seattle and at Gilda's club designed for survivors but this one was for real. It was a "slow flow" class which emphasizes holding the poses for a longer period of time. While I couldn't do more that half of the poses due to lack of flexibility and strength, the ones I was able to do I'm feeling today! My abs are pretty sore and the backs of my legs are starting to feel it too. If I'm blessed to be able to continue, I think it's going to do a lot of good to help me with my balance and the strengthening of my muscles which are barely recovered from the Guillain Barre Syndrome I dealt with up until the beginning of last summer.

I'm finally getting back into reading too which is great. My Mom bought me this book written by Keith Richards of the Stones. I've only gotten through the first chapter but it's a story that sucks you in right away. I have a feeling I'm going to have a different view of one of my all time favorite bands when I'm done with it... I mean those guys were pretty much one of the first Rock bands (can't forget the Beatles) that went through all the stuff you see everyday now on VH1 behind the music. What a crazy life it must be to be a rock star...

I also caught a movie that tickled my funny bone the other night big time. It's an SNL spoof on an old show I used to watch called McGyver (the spoof or movie is called McGruber). I don't know if I was just in a silly mood or what but a couple of scenes had me laughing so hard I was in tears! When the movie was over I went to the bathroom and was still laughing my ass off as I was whizzing, ha! I recommend it to anyone who used to watch that show and has a silly sense of humor.

Anyway, it's now after 1:00 a.m. and thinking I'm going to be lucky to get a "nap" in before I have to head to the airport in a bit. I'm going to be a zombie tomorrow and it's going to be interesting walking through the snow in Manhattan on my way to NYU. I've gone through worse when I had my second transplant in Seattle when they had the worst snowfall they've had in 60 years when I couldn't even get my car out of my subdivision! Basically, the whole city was shut down but still managed to get to my TBI (total body irradiation) appointments twice a day for four days and the subsequent high dose chemo days and finally getting my cells back.

Well, I think my eyelids are starting to get a bit heavy and think I'll try and get some sleep here.

If you get a chance, please take a moment to check out my friend Bekah's latest blog entry before she makes it private. I've mentioned this before but she has a way of expressing herself that most of us refractory people can not. You'll find her blog on my blog list under "True Beauty Never Hurries".

Hoping to post some good news tomorrow...

Christmas Time is Here...

2010-12-23T14:00:00.004-08:00

I think I'm finally ready :) I was having a tough time getting into the spirit but now that my shopping is done and I can relax I'm looking forward to spending time with my family again and eating some Polish food!

I also wanted to move that last depressing post down a notch as I was told by a few people that it made them sad and I don't want to do that, especially this time of year.

Had a chance to hang out with my cousin Jeff yesterday who's in from Hawaii and it was good to catch up. My buddy Mike who I grew up with and was roommates with in Socal is going to be moving to the big island in January so I have two people to visit/stay with out there now, awesome! Jeff was telling me how beautiful the big island is and showed me some pictures of these incredible beaches where they have green sand! He was also telling me he's got this secret spot near where he lives where you can go out into the ocean around 7 a.m. and swim with dolphins with no one else around! I guess it's not quite a secret spot actually as he said tourist boats start showing up around 8-9. Anyway, it's something I've always wanted to do and I'll be saving my cash to make the trip out there hopefully soon.

It's kinda crazy as not only are the days winding down to Christmas/New Years but my 40th birthday as well! I remember when I relapsed after my stem cell transplants and thinking that I probably wasn't going to make it to 40 so I guess you could say this is a big one. I'm going to do my best to make sure it's memorable as usually my birthday sucks being January 5th, right after the Holiday's and New Years where everyone is burnt out, broke and over being festive. The plan is to start here with friends and family then continue down in Florida as I'm due to fly back down on the 6th.

Anyway, time to go down for a snooze and try and get some energy to clean up my place and wrap some gifts.

Cheers everyone!

Chris

Insomniated

2010-12-22T00:17:00.002-08:00

If that's even a word...

For some reason, my mind has been racing all night. Of course, it's 3:20 a.m. and I can't get to sleep even though my sheets, comforter cover and pillow cases are all nice and freshly washed (I'd have to say this is one of life's simple pleasures, clean sheets!). At least it's not my back that is keeping me awake :) Knock on wood but it's been feeling pretty decent the last week plus...

I was just trying to make heads or tails of all the Medicare Part D prescription plans and there's so much to consider, ugh... I think what I might do is go to a CVS and talk to one of the pharmacists there to see what their experience is with the different plans. I've also put the question out to my Hodgkins Forum and hope to get some good responses. I believe I have until the end of the year to sign up so there is a little sense of urgency here...

I started playing my guitar again tonight and loosely promised myself that I would try and learn one new song per week if possible. Tonight it was Follow You Into the Dark by Death Cab for Cutie. Always thought it was a beautiful song and the chords and rhythm are pretty doable. I recorded a song on my phone earlier that I've been playing for a long time, Neil Young's "Old Man" although I think I ruined it by trying to sing along, ha! It's pretty cool that I can even play the guitar anymore as this time of year last year it was getting tougher and tougher to play with the neuropathy and eventual onset of Guillaine Barre Syndrome.

I've also made a promise to myself that I'm going to start doing Yoga again at least a couple times a week. I just don't get enough exercise and think with the right class can work on my strength, balance and flexibility while hopefully not harming my back.

It seems as if I'm at a crossroads right now and I'm trying to figure out what direction my life is going to take. I need to find a purpose as I feel like I'm going through the motions (as I've mentioned recently before).

I guess you could also say I'm a little lonely lately... I don't ever talk about my social life (and not sure why I'm bringing this up) but it is difficult to find the confidence and desire to build a relationship when you're dealing with refractory cancer. Sometimes I think that I can survive and be happy being single and just having a bunch of good friends but there are other times where I think it'd be nice to share my life/experiences with the right gal... I'm not so sure this is possible with my condition but I guess time will tell.

BTW, I'm due for another scan on the 28th. I think the results of this will go a long way in giving me confidence that I can continue to live a relatively normal life in the short term. I have to say, one of the most difficult things about living with a chronic illness like this is the uncertainty of what things are going to be like next month let alone next year. I have the live in the moment part down pat, it's the planning part that is difficult.

I wanted to talk about politics and the extension of the tax cuts but think I may save that for another post... I will say that it is sad that greed and an unwillingness to sacrifice a couple of percentage points (by those who can totally afford it) is going to continue to increase our deficit. What happened to all of this talk by the new party in power (in the House of Representatives) and the commitment to reduce the deficit? I have such disdain for the hypocrisy and lies of politicians but for some reason can't seem to tune it out! I had thought a couple of times about starting a blog with just my political views (as I have many) but who in the world would want to read that crap right?!

So for now, I'll just continue to share my thoughts on this living with cancer odyssey while sprinkling in some other tidbits here and there.

I think it's time for me to try and get into the Holiday Spirit!

Only a few days left until Christmas, where has the time gone?!

Feliz Navidad :o)

One more day..

2010-12-18T19:34:00.007-08:00

One more day in Florida then it's on to Christmas festivities back home. It's been a fun week and will definitely look forward to coming back :)

For a second or two, I was Delray's finest, ha! Tryst on Atlantic Ave. Delray Beach

Pretty wild shot of the huge Christmas tree on Atlantic Ave in Delray Beach

Just like last year, plenty of Christmas cheer here!

Cool Sunshine!

2010-12-13T20:33:00.003-08:00

It's a little chilly by Florida standards but I'll take it! I mean, it's at least 50 degrees warmer here than what I just left in Michigan so I'm not complaining... Considering I was shoveling snow at 7:30 this morning and tomorrow will be doing something outside in the sun life couldn't be better!

In three hours I went from this (looking out my front window in Ferndale)

To being able to swim in this right across the parking lot! I'm a lucky guy ;)

I was just thinking earlier on the plane about the sun... I know I've written about this before but can't get over how much of a mood booster it is! Us Michiganders and people in general who have to deal with a cold dreary winter are pretty damn tough people. Life is so much tougher when you have to deal with the cold, snow, salt, wind, gray skies, gray everything, icy roads, I could go on and on. Simple things like going out to get your mail, carrying groceries in from the car, scraping the ice off of your car, taking the garbage out, etc. are a challenge in a harsh northern winter. It makes me appreciate how much easier life is in the warmish weather and how much brighter (literally) daily life is when it's warm and the sun is shining :) Have I mentioned how blessed and lucky I am to be able to come down here and "heal". Gol-ley as my friend Elise likes to say!!

By the way, I wanted to also point out another bone head move on my part, ugh. I mentioned and thanked the Reeds a few days back for their generous gift. The part I didn't realize is they are the same Reeds as in the legendary Mike Reed (I believe) that has been battling Hodgkins for the last 11 years! I just caught up on his blog (and created a link on my blog) and found out Mike is currently doing Bendamustine chemo and noticing some great results on it (70% reduction!). Mike is truly a warrior and a hero and I'm even more honored for the gift, thanks again guys.

So, the plan is to get as much R and R down here as I possibly can. What that entails I have no idea. Just going to go with the flow :)

Chaka,

Chris

Major Relief

2010-12-12T11:47:00.002-08:00

Wow, what a difference! I don't know if it's the SAHA/Niacinamide or the Naproxen (prob a combination of both) but my back is feeling much better!

Just sitting here relaxing watching my pathetic Detroit Lions. I was supposed to go to the game as my buddy had a free ticket but it fell through thank God. They just showed a clip of the Minneapolis Metrodome roof caving in and it was pretty crazy. Thankfully the game wasn't going on when that happened. I guess they're going to play the Monday night game between the Vikings and Giants here in Detroit tomorrow night. I wonder how all the fans are going to get here? I think I need to investigate that one a little more.

Well, I couldn't have picked a better time to go to Florida! It's snowing like crazy here and the roads are a mess. Can't wait to soak up some sun!

I wanted to send out some good vibes to my new friend Tiffany who's in the hospital recovering from her stem cell transplant. Go Tiffany!

That's all I have for now, this game is making me sleepy and think I'm going to go down for a nap, ahhh!

Happy Sunday :)

Can finally breathe easier...

2010-12-11T00:20:00.002-08:00

So I went to a local lab today for another blood draw and thank God my platelet count came back at exactly 50,000, what a relief! I've been on pins and needles not knowing if I'd be able to continue on this trial as sketchy and uncertain it has become. It's crazy to think that I've pinned my hopes on something that I don't even know is working anymore but such is life living on clinical trials. What I do know is that I can take Naproxen again and that combined with the SAHA/Niacinamide seems to greatly reduce my back pain. Can't tell you what it's like to wake up in the middle of the night with the kind of back pain I was experiencing. It was to the point that no matter which way I laid in bed it felt like I had a knife in the middle of my back. Yet, I was so tired from the pain meds I couldn't get up. Pretty uncomfortable conundrum but hopefully tonight I will be able to sleep all the way through and start fresh tomorrow, yay!

So, off to dreamland I go hoping I can stay there until the morning.

Thanks for the support :)

Goodnight

Somewhat under control

2010-12-09T18:57:00.008-08:00

Well, I've gotten on top of the pain but unfortunately my platelets didn't cooperate today after two blood draws and running up and down 7 flights of stairs. Since I've been on the trial for 11 cycles now and have had a history of low platelets, Dr. Zain was nice enough to let me bring the pills back with me. The only thing is I can't take them until I go to a local diagnostic center and get my blood (platelets) checked.

So, the plan is to go tomorrow to this place in Royal Oak and hope to God that my platelets go up. I was at 46,000 and 42,000 (the normal low range is 150,000) and need to be at least 50,000. I've had this cold virus and had taken some penicillin both of which I was told lowers platelets. I'm hoping one more day with the virus weakened and another day for the PEN VK to get out of my system and I'll get to 50,000. This would be huge on two fronts: one; I can take the SAHA again which seems to control the pain and two; be able to take Naproxen which works great in conjunction with the heavy pain meds and allows me to take less of those.

I just want to get right before I leave for Florida on Monday.

I think things are going to be alright ;)

By the way, I wanted to send my deepest thanks to April, Trent and Mike Reed and also my old friends Doug and Fran from Mania Interactive for your generosity. I feel really blessed today despite all of the B.S... :o)

I also wanted to mention a loyal commenter on this blog and friend Loraine who lost her son Chris from Hodgkins complications. I was talking about friends who lost kids to this stupid disease and failed to mention Loraine, sorry. If I've missed anyone else, I'm sorry, my memory definitely isn't as good as it used to be...

Crazy Back Pain

2010-12-09T03:31:00.002-08:00

I just wanted to document that it's 6:30 a.m. here in New York at the Hope Lodge and I've just been awaken to the worse back pain I think I've had yet. The pain is so intense, I'm having trouble breathing. This is really scary. Maybe it's because this bed is softer that what I'm used to or the fact that I was sitting for so long yesterday at the airport with a delayed flight plus sitting on the airplane but this is ridiculous. I just took two pain meds hoping it can cut into this pain a little before I go get my platelets checked and can take a couple of Naproxen.

I don't think I can endure this much longer... Question is, should I do another cycle of this SAHA/Niacinamide or let my body continue to "dry out" the required 30 days and try and find another trial asap.

A nice person commented on one of my previous posts that RAD001 is open in Tennessee and since it's a national trial am wondering why Dr. Ramchandran would have told me it's no longer available in Detroit. I think I may have to do some pushing here...

Anyway, sorry for the rant but I've got to release this pain somehow... I'm also really scared that my spine is going to crack or something. It feels like my back is ready to snap in half or something. This is surely no way to enjoy life... I'm going to demand some answers from Dr. Zain as Dr. O'Connor seems to not be in again today.

Please wish me luck...

Keeping Warm

2010-12-06T21:38:00.007-08:00

Wanted to update from under the blankets, the windows in this house are shot and it's freezing in here! Just finished watching fellow Wolverine alum Tom Brady carve up the cocky New York Jets in surgeon like fashion. What a life that guy has! Not only is he a future Hall of Fame quarterback, he's got the looks (married to one of the most beautiful women in the world), is a millionaire many times over and is just wildly successful in pretty much everything he does. Despite all of this and most impressively, he seems to be a genuinely good guy in this day of narcissistic, self indulged overpaid athletes. Good for him...

Believe it or not, I'm still fighting this bug, ugh! I've heard some people have had it for three weeks so I'm hoping that it's on it's last legs. The fatigue from the SAHA and effects of this cold are pretty debilitating. I managed to start some Christmas shopping today so I don't feel entirely useless ;)

I feel really bad for baby girl Chili :( She got her paw caught in a trunk the other night... I didn't see it happen but heard her yelping and from there it's kinda fuzzy. Had to rush her to the emergency where she was x-rayed and determined to have a fracture of her metacarpal and a severely bruised paw. She was in quite a bit of pain the first couple of days but seems to be doing better. It's funny watching her hop around with that cast on! She doesn't want to put any pressure on it so she's pretty much a three legged dog these days. Chili's always been pretty good on three legs though (she's got amazing balance when she scratches her nose with her hind paw; it's pretty impressive not to mention she does the "tri-pod" when she has to tinkle. The part I worry about is she's started to chew the top of the cast and somehow I've got to get her to wear the thing for 4-6 weeks! Maybe I'll put some hot sauce on it or something if she keeps munching on it, (just kidding ;)

At least they gave her a holiday cast!

She was pretty miserable though :(

Even though I don't have kids, I can now imagine or understand the pain a parent must have when their kids get hurt or sick (at least I would think most parents). It was such a helpless feeling when for the first two nights she would just wimper and cry. I couldn't get any sleep knowing how uncomfortable she was.

I have some friends from my Hodgkins Forum who lost their kids (Alison who is Adrienne's Mom and most recently Sharon who is Mike's Mom). I can't imagine what they went through (and still going through) while their kids were sick and then passed . I can't imagine what my Mom has gone through watching (and actively participating) in both my sister and my struggles. She's a pretty strong woman...

So, I leave for New York this Wednesday for the required blood work and doc visit. It's been determined that I can't stretch my visits from 3 weeks to 6 weeks as Dr. O'Connor wants to scan me again on December 28th. I was so looking forward to not having to go to New York in the middle of the holidays but it is what it is I guess. At least I'll know if I'll be staying on this treatment or having to start something else for 2011. I of course would like to keep going with this treatment as I've pretty much gotten used to it and have had some minor success with it but something is telling my my SAHA days are numbered. I can really feel the disease in my back lately... The nice thing is I don't have any "B" symptoms like itching, weight loss, fevers, night sweats, etc. so maybe there is a chance I can continue. I realize it's out of my hands though so I'm just trying to roll with whatever happens and make the best of it. The only thing that's a little troubling is my planned next move, RAD001, has pretty much filled up and won't be opening the next phase until the spring sometime. I guess I'll cross that bridge when I get to it (not to sound too cliche).

For now, the plan is to enjoy the holidays and my little Florida getaway starting next week!

To my Jewish friends out there, Happy Hanukkah!

Chris

Feeling Better...

2010-12-01T09:44:00.007-08:00

Well, I'm cautiously optimistic that whatever it is that's been wreaking havoc on me is on it's way out. I've been taking anti-biotics and they seem to be helping. My head doesn't feel quite as underwater as before and most importantly, my cough isn't as bad although it's still there.

Thank you to those who have offered up encouragement and advice :)

Cheers,

Chris

BTW, I just was notified by my friend Lee (who's a Glioblastoma survivor) that he started a new blog, "One Quarter Blind". Please check it out on my blog list if you get a chance. Go Lee!!

Can't forget my cousin Ken who started a blog regarding his post experience with prostrate cancer, focusing on humor and awareness. The evolution of dance clip from You Tube is classic Ken!

Also, I wanted to report that I received an email today from an administrator from the "Navigating Cancer" site. I'll let Becky's message speak for itself:

Hi Chris -

I want to let you know we found your blog post "Reflecting" very inspiring. So much so we included it our Navigating Cancer blog roundup last week. I've enclosed the link for you to take a look if you like http://www.navigatingcancer.com/blog/cancer-blog-round-up-november-24/

Have a good day Chris!

Becky Walker
Navigating Cancer

It's nice to get noticed sometimes! ;) Not to mention, my friend Kirsten's made it on there too, go Kirsten!!

Back to Basics

2010-11-29T21:34:00.006-08:00

Well, it didn't take long to find some serenity... I'm going back to basics and one of my favorite Buddhist teachers, Thich Nhat Hanh. I remember reading a few of his books when I was first diagnosed and how calming they were. It's important for me to remember to be mindful as I've been getting caught up in the fear of being sick (and this developing cough).

Here's some of my favorite quotes:

“Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.”

“And once we have the condition of peace and joy in us, we can afford to be in any situation. Even in the situation of hell, we will be able to contribute our peace and serenity."

"Waking up this morning, I smile. Twenty-four brand new hours are before me. I vow to live fully in each moment and to look at all beings with eyes of compassion."

"The kingdom of God is available to you in the here and the now. But the question is whether you are available to the kingdom. Our practice is to make ourselves ready for the kingdom so that it can manifest in the here and the now. You don't need to die in order to enter the kingdom of heaven. In fact, you have to be truly alive in order to do so."

"When we walk like (we are rushing), we print anxiety and sorrow on the earth. We have to walk in a way that we only print peace and serenity on the earth... Be aware of the contact between your feet and the earth. Walk as if you are kissing the earth with your feet."

"Know that life can only be found in the present moment."

— Thich Nhat Hanh

Of course, I'm hopeful that whatever it is that's festering in my body (hopefully just a bug) goes away quickly and I can get back to feeling relatively well. If not, I'll be going in to see Dr. Ramchandran asap so we can put a plan together to get me back on track. If it's the disease growing that's the cause of this, I'm sure there's something out there that can bridge me until I find another clinical trial.

Looking forward to a new day tomorrow :)

Under the Weather...

2010-11-28T23:08:00.002-08:00

Ever since Thanksgiving, I've been struggling a bit. I either have the flu or a chest/head cold that I can't seem to shake. I thought it was on it's way out today but here I am in bed typing this and my head feels woozy and I'm totally stuffed up, ugh. Hoping this starts resolving by tomorrow...

I'm hoping it's just the weather changing here (it was pretty cold this weekend). My place is pretty drafty too, even Chili has been jumping up on the bed lately at night probably because it's colder down on the floor!

This is a weird time of the year too with how it gets dark so early, I think I miss the summer already!

It just struck me as I search for something else to say here that my life has gotten kinda dull and predictable lately... I think I need to start a new hobby or something, I feel like I've been thinking about the cancer a little too much lately. Distractions (especially good ones) are always helpful in this regard.

We'll see what I can figure out this week.

I've ordered copies of my latest PET scan to be sent to Karmanos so that the radiologist there can take a look and consult with Dr. Ramchandran to make sure I'm getting the full story from NYU. I think it's in my best interest to get an opinion on the latest bit of growth from someone who doesn't have a stake in the clinical trial. I don't know if it's the body aches from the bug I have but my back was really sore yesterday. I've also been having a really difficult time with my hands locking up the last couple of days. I have no idea if any of this is related but like to write it down so I can go back if I have to.

I think the warm weather of Florida is really calling my name right now... I'm supposed to go back down for a short trip December 13th. Looking forward to it. Until then, I have my scheduled trip to New York on December 8th. Not really looking forward to that one for some reason.

Time to hopefully get some good sleep and let me body fight off whatever it is that's wreaking havoc on my head right now.

Goodnight :)

Thankful...

2010-11-25T19:44:00.003-08:00

Just had a nice evening at my Mom's with the family to celebrate Thanksgiving :)
The food was awesome as always and everyone was in a good mood. Unfortunately, I couldn't stay as long as I wanted because I was so tired! I had one glass of wine and it wiped me out (plus the turkey probably had a little bit to do with it, ha ;) No matter, it was great to catch up with my cousins, aunts and uncles and family on Rich's side, plus my sisters boyfriend, Carl.

I was asked to say grace at dinner and I wasn't really prepared to do it! I really can't remember what I said but was hoping to express how thankful I am to have family surrounding me (and friends and other family members who weren't there) who sincerely care for me. I also wanted to say how thankful I was for all of the good times that were had with members of family that are no longer with us. I also wanted to say how thankful I am for the awesome life we get to live as American citizens and for each precious breath that we take in this precious life...

Happy Thanksgiving!

Chris

Official Report is in...

2010-11-19T20:15:00.003-08:00

So, I just opened and read the official dictation of my PET scan and it's pretty much what I expected it to be. 4 out of the 5 "targeted areas" or lesions have increased in size and metabolic activity. I only used to have 4 areas but it looks like the cervical node that popped up a few scans ago is here to stay. I guess I'm kinda numb to it right now as I'm pretty calm (thank God for Attivan). It is concerning any time the cancer is getting "bigger" though. Dr. O'Connor wasn't there and I saw Dr. Zain. She mentioned that disease tends to "wax and wane" on this drug so I'm hoping that it'll start waning again on this cycle or I may have to start thinking of other options. We didn't discuss when we're going to scan again but will find out when I go back on December 9th.

Another troubling thing on the report that I need to investigate is; "Evaluation of the visualized skeletal structures demonstrates slightly increased cortical erosion/remodeling at the paraspinal regions mentioned above (where most of my disease is). It sounds like my bone or spine is starting to erode, ugh...

The plan for now is to try and enjoy the weekend (I miss Chili and can't wait to pick her up from my Moms!). On Monday, it's back to business as I'm going to forward the report to Dr. Ramchandran here in Detroit and see what his take is on it. I also need to contact a specialist for my back to make sure the eroding spine thing is being handled. It sucks because I'm not approved yet for Medicaid and have to cover the 20% of of my medical bills that aren't covered by Medicare. I did receive a letter back from DHS though and hoping I can get the Medicaid pushed through quickly.

I've written in the past how dealing with cancer is a 24 hour a day 7 day a week job. With this kind of crap, it feels like I have to work overtime as ridiculous as that sounds...

My spirits are surprisingly pretty good right now though so I'm just gonna keep rolling along and enjoying life the best that I can as always.

I've got big plans!!

Good News Bad News

2010-11-18T16:51:00.003-08:00

So, just got up to my room finally after starting my day at 4:45 a.m. I flew in to NYC, got to NYU, had my PET scan and waited for the results. Dr. O'Connor wasn't in today so Dr. Zain came in and reported that they're going to keep me on the trial (good) but the targeted nodes that they have been watching have all increased slightly in size (bad). I don't have the official report in hand yet so I'm going to refrain from getting into too much detail. Bottom line is I'm a little dissapointed after such a positive visit last time and all the talk about a partial or even complete remission, ugh...

Anyway, I guess I'm used to this kind of news and shouldn't get too caught up in what might have been. I'm still feeling relatively well (although a little wounded mentally). It would just be so nice to hear the words remission for once...

Once I receive the report, I'll do another post and share the results along with my feelings on it. Right now I'm going to go meet some friends in Manhattan and try and have a fun evening.

I guess you can't always get what you want...

Reflecting

2010-11-14T19:19:00.005-08:00

Just laying here watching the game and was just reflecting back to the last time I was here in Florida. My mental and physical well being were in such a different state... I was just regaining the normal use of my hands and legs and was always exhausted. I remember simple things like walking across the parking lot to the pool or trying to get my keys out of my pocket and unlocking my door were a major challenge. I remember struggling to walk down to the beach, having to basically "fall" to the sand to sit and barely being able to get back up. I also remember trying to keep up with this blog even though I had to type with one finger because my hands were useless. I've come a long way since then, thank God!

Because of this, I'm in such a better place these days. Life is so much more enjoyable when you can physically suck the marrow out of it. I remember being on SGN-35 when the severe muscle aches started. Then came the slow then sudden onset of Guillain Barre Syndrome. I remember thinking of ways to live with all the discomfort and pain... I was devising ways of being able to "live in my head" if that makes any sense as I thought I would have to live like that until my days ran out. Honestly, now that I look back, I think I was pretty depressed.

While things are far from perfect physically, I am doing so much better these days. I just hope that this can last for a while... What would a reasonable amount of time be? I really can't say. Dare I dream that this would last another six months? How about a year? It's very difficult to not get too caught up in feeling relatively well knowing in the back of my mind that this treatment has an expiration date and I'll eventually have to roll the dice on another clinical trial. I need to start reading my Buddhism books again to remember to live in the moment!

I can say though that at this moment, life is pretty darn good. I'm going to try and thoroughly enjoy my last few days here while mentally preparing for my upcoming scan this Thursday in New York.

One day at a time ;)

My buddy Danny and his wife Celia. Danny's work finally made it into a gallery! He has a friend that opened Village Studio Gallery on Atlantic Ave. in Delray Beach and he's one of 4-5 featured artists. It's going to take some time for word of mouth to spread but now that it's in season here foot traffic will be increasing and hopefully they can sell some art... Here's the link to the gallery if you want to check out some of the artist's work. http://villagestudiogallery.com/

Mike, one of the artists was doubling on the keys!

I've been dreaming of rolling up to the beach in a convertible for a long time and now it's reality! Pretty cool...

Traveling Jesus and I having lunch at my favorite spot!

Made It!

2010-11-11T20:39:00.012-08:00

Got an internet connection finally and just wanted to say I made down to Soflo in one piece! The Bimmer ran like a champ and it was a fun drive. The colors are still changing down in Tennesse and Northern Georgia, very nice :) As I gassed up in Florida for the last time, I decided to take the top down and do the final leg "topless", ha! I have to say, it was one of the most satisfying (almost spiritual) experiences I've ever had...

Also had a chance to visit my good friend Anastasia in St. Augustine who happens to be a Hodgkins survivor (sorry and thanks for the permission Anastasia ;) Happy to report that she's still in remission and has moved on with her life...

It's so nice to feel the sun on my face again, ah!

Life is good :)

For documentation purposes, wanted to note that my lower left shin is itching something fierce and the itch seems to be coming from under the skin, classic Hodgkins type itch, ugh. Going to keep my eye on it...

R.I.P. Mike :(

2010-11-08T23:21:00.002-08:00

Just wanted to send my condolences to my friend Sharon who just lost her son Mike today to this f'ing disease. Mike was a hero of mine and I'm really sad to hear of his passing.

Here's a link to the Hodgkins Lymphoma board I'm a part of and a beautiful post by Mike's sister who also happens to be a Hodgkins survivor.

http://forums.lymphoma.com/showthread.php?t=48440

This is pretty tough news to deal with and with that said, I will appreciate life even more starting tomorrow as I head down to Florida with a heavy heart...

Chris

Migrating South

2010-11-07T23:37:00.004-08:00

Just wanted to check in after what seemed like a long Sunday (if only by an hour). I watched my Lions once again snatch defeat from the jaws of victory, ugh...

I'm getting excited though as I'm going to attempt to leave tomorrow for Florida! It all depends if I can get all my stuff done here in time and if not will be leaving on Tuesday. I've got the Bimmer running like a champ after getting the rear wheel bearing replaced. It's like night and day as it was really vibrating before. I've had a couple of different people look it over for me and have been given the thumbs up both times thankfully. Still, I'm a little nervous driving a car with 300,000 plus miles on it from Michigan to Florida. We'll see what happens!

Life has thankfully been pretty uneventful lately. I'm still feeling relatively well and even went for my first run (actually a really slow jog) in a long time earlier this week. It was only around the park across the street (probably a mile) but it felt great and I had decent wind. I want to start doing more of that to try and keep my lungs strong. I think I'll start riding the bike and swimming once I get down to Soflo if my body allows it. I can't wait to swim in the ocean again!

I wanted to send out some good vibes to my cousin Rodney who I just found out a couple days ago was diagnosed with what else, Hodgkins Lymphoma, ugh. My family has a history of cancer but two of us now having HL is pretty strange knowing how rare the disease is. I know things will be ok for him though and wishing a drama free treatment out there in Vancouver BC.

That's pretty much all I've got for now, I'll probably update from the road or once I get down to Florida.

Sunshine, here I come!

2010-11-07T23:37:00.001-08:00

Checking In...

2010-11-01T21:12:00.003-07:00

Just sitting here watching some of the coverage prior to tomorrow's election and wanted to catch up...

So, it looks like the Republicans are going to take control of the House and the Democrats will probably hang on to the senate although there's an outside chance that may flip as well. It's so crazy how quickly the political tides change. I'm still in shock that our country is poised to give control back to the party that steered the country into the recession. What's going to be different this time? I've been paying attention lately and I really haven't heard any novel ideas by the GOP. In fact, Mitch McConnel, (the now minority Republican Senate leader) said the #1 goal of the GOP for the next two years is making sure Obama doesn't get re-elected. That doesn't sound like responsible governing to me.

I guess with things still pretty bad out there with housing and the job market and only slowly getting better, someone has to take the blame and in this case it's the Democrats. I think the health care legislation was the nail in the coffin. It created a perception that Obama and the Democrats weren't interested in fixing the economy but a political feather in their cap with the new Health Care Bill. This combined with the fact that the Bill isn't very well conceived (and probably needs fixing) and you have a recipe for disaster for the party in power who passed the legislation.

My hope is that instead of more gridlock, perhaps for once the two parties can work together to continue to try and fix the economy and improve the shortfalls of the new Health Care Bill. Locally, I'm hopeful the guy I'm voting for governor, Republican Rick Snyder, is going to be the inclusive leader he promises and helps to get Michigan out of the dumps. I think Independents like myself (which comprise the majority of American voters) want our government leaders to work together and find common ground in the middle. As I think about it though, it probably will never happen. With as large as this country is and with so many different viewpoints (for example the lens which rural America looks through as opposed to an inner city view) there's always going to a clash of ideals. This really struck me when I was in Holland. It's fairly homogeneous there and the population is relatively small so people can find common ground much easier (and as result have a much more harmonious society than we do here).

Anyway, I have a ton more to say on the elections tomorrow but think I'll just let the results speak for themselves. I will be very interested to see what comes next...

In a somewhat related note, today is my official first day without having private health insurance as I've taken the forced lunge into Medicare. I have to go apply for Medicaid tomorrow so I can hopefully supplement the 20% of my medical costs that aren't covered my Medicare. I feel fortunate that I'm feeling relatively well as I couldn't imagine having to deal with this crap if I was feeling like shit.

There is light at the end of the tunnel however as I'm getting ready to drive down to SoFlo next week! I'm really nervous but I'm going to be attempting to drive my convertible (and the 300+K miles it has on it) down there. I'm taking it in tomorrow morning to have the rear wheel bearing replaced and hoping everything else is going to be solid enough to get me there. I've already had the timing belt replaced and have been told that the engine in the car I have (BMW E30 325i) can run for 1,000,000 miles!! I have a feeling there's going to be some interesting blog material made on that trip but of course hoping for a boring uneventful journey. I'm really looking forward to some warm sunshine again...

To unfortunately close on a sad note, it looks like my fellow Hodgkins Warrior Mike from St. Clair Shores is going to ride off into the sunset, hopefully peacefully. His mother Sharon sadly reported today on our forum that the family has decided to call in Hospice rather than deal with the inevitable ventilator. I guess his body has been through one too many treatments and the cancer is no longer responding to any of them. My heart and prayers go out to the family.

I also wanted to send some good vibes to my friend Kirsten out in Vancouver. She's really been struggling lately after finishing up 6 cycles of Bendamustine and doing a single treatment of Vinblastine which really threw her for a loop. I hope you're back on your feet soon Kirsten and rooting for you here in the D!

That's all I've got for now; thanks again to Marie, Jim and my Godmother Aunt Shelly and Uncle Butch for your generous gifts :) I am a very blessed...

Good night everyone and good luck :)

From New York with Love

2010-10-28T06:32:00.004-07:00

Well, just sitting here in bed at the Hope Lodge feeling like a zombie... I haven't been able to sleep the last couple of nights and thought I'd goof around with my blog. I can't wait to get my pills so I can take some Aleve (Naproxen) and get a good nights sleep. I can't take the Naproxen for 5-6 days prior to my New York trip as it causes my already low platelet count to go down even more threatening my ability to stay on the clinical trial. Only a couple hours left until I take my walk up 34th ave. passing the Empire State Building to NYU Langone, yippee!

So, as you probably noticed, I did some sprucing of my blog. It's pretty cool how Google provides tools to customize this thing. I am far from a computer guy and have to say the tools that are provided makes it seem like I know what I'm doing, ha!

I've added a counter at the bottom of the page which shows total number of page views. I was a little shocked to find out this blog has been viewed almost 10,000 times, wow!

Also, this is a little embarrassing but I've finally broken down and put a link up for donations to my clinical trial travel fund. It's tough having to travel to New York every three weeks living on disability. I'm looking into things that will supplement my income but have to be careful not to jeopardize my eligibility for Medicare (and hopefully Medicaid). My situation (or anyone who will have to fight cancer for the rest of their lives after losing their job) is difficult in that I would like to go back to work if I could find a job but who is going to hire someone who has chronic cancer (especially in this economy)? Not to mention, what insurance company is going to carry me? The laws against discriminating against pre-existing conditions don't kick in until 2014. So, for me to go back to work, I'd be taking a huge gamble that quite frankly I can't afford to take.

That said, I am managing ok for now and know that I will continue to manage. I have also been blessed to have such a generous family (thanks Mom and Rich and Karen for the recent gifts :).

Well, I think I'm going to try and shut my eyes for an hour before I have to leave.

I hope everyone who reads this has a fun Halloween (if you celebrate)!

Quick update:

Just got back and my platelets were just over the threshold (51,000) and I can continue on the trial. Dr. O wants to scan next visit and if things are continuing to shrink, he mentioned that I can petition to stretch my visits from every 3 weeks to 6 weeks which would be great. I'm also going for the record of 13 cycles! So far, this will be my 11th. Dr. O said this trial has totally exceeded his expectations and even got cocky by saying this is going to make him "even more famous" and it's going to be even tougher to see him... I guess every doctor has a narcissistic side and as long as things keep going the way they're going, I could honestly care less!

Prayers for Mike

2010-10-25T23:09:00.003-07:00

I just wanted to solicit prayers for a fellow Hodge Warrior who happens to live not too far from me in St. Clair Shores. His name is Mike and while I have never met him, I've had the pleasure of corresponding with his Mom after meeting her on our Hodgkins Lymphoma board.

Mike isn't doing very well right now... He's been fighting Hodgkins since 2002 and has had tried more treatments than anyone I know. He's had to travel to Chicago and Minnesota for clinical trials and suffers from chronic pain in his back as he has spinal disease like me. Unfortunately, because of all the treatments Mike has endured, his blood counts are also chronically low requiring constant infusions of blood products. Because of these low counts and suspicion of disease spreading he's been taken off his latest trial, RAD001, the one I was looking into next if/once the S@N stops working. Mike is currently in ICU and his Mom reports he is almost incoherent and being made to wear mittens so he doesn't pull out his IV's. She didn't mention if they have a plan yet to try and beat back the disease which is a culprit in his downturn. I sure hope they do as Mike has been one of my heroes ever since I joined the forum and especially after finding out I was refractory.

It's so hard to sit here and know this is happening to a comrade and could very well happen to me at some point. I know I speak for all my fellow Hodge Warriors when I say this. We are all happy and inspired to hear that someone is doing well but at the same time feel sadness when hearing about one suffering.

Please join me in praying/hoping for Mike and anyone else who is dealing with this messed up disease.

Thanks, Chris

Dank je wel Amsterdam!

2010-10-21T07:10:00.015-07:00

Me and my buddy Sean (aka Tubbs) sitting in first class to Amsterdam! Sean works for Delta and hooked up tickets for almost nothing...

Day 1

This is unbelievable! I’m sitting on this big ass jet heading to Amsterdam in first class! I’ve never flown first class before and I feel like royalty. These seats are amazing! I have my own entertainment system, with movies on demand and watching this great flick called Cyrus. I just finished a gourmet meal of beef tenderloin, shrimp scampi, snow peas and this sweet creamy risotto which was one of the tastiest things I’ve ever eaten. Prior to this, they gave us these seasoned artichoke hearts, smoked salmon, something else that was like a potato with delicious seasoning along with squash soup. And right before the main course, brought out a nice field green salad with yellow peppers, blue cheese, walnuts and balsamic vinaigrette. For desert, it was cheesecake with chocolate and strawberry topping. They served all of this with a delicious Malbec red wine. I’ve always wondered what it was like to sit up in first class and to think I’m doing this for $150 (Sean said this ticket may be upwards of $6000 if we had to pay!) He can do this whenever he wants to wherever he wants on the drop of a hat, not a bad perk. Hoping he can hook up another trip, talking about Argentina or Thailand, we’ll see….

So, since I don’t have internet connection for the rest of the trip, I’m going to try and chronicle the trip sequentially on Microsoft Word then cut and paste...
It’s 10:30 and by the time we get there, it’s going to be the next morning so time to take my pills and try to get some sleep. I don’t think it’s going to be that tough as this seat reclines completely flat, I have a pillow and blanket not to mention a lumbar massage feature on the chair that just rolls up and down my back right where my disease and herniated discs are located, ahhhhh. I can’t imagine life being any better right now! This is going to be a great trip :D

Last day:

Ok, back here on my last day! Been going pretty much nonstop except for naps and it’s an early night tonight so I figured I’d bust out the recap ;)
Overall, it’s been a total blast  Amsterdam is a visually beautiful, thoughtful wonderful city. The food is really good everywhere, there’s a ton of things to do and the people here really have a great time. Unfortunately, the locals’ view of Americans isn’t exactly positive. Sean and I investigated to try and find out why this was and the predominant response was the whole war thing (mainly Iraq). I think there has always been some disdain of American politics here but with that said, American culture is everywhere you look, crazy. There’s tons of McDonalds, Burger Kings, KFC’s etc. and of course the American pop culture like music is pretty strong. Still, the people just seem to be stand offish (word?) and we tried to make friends with other tourists which proved to be a good strategy thankfully. Me and Sean actually met some friends at the Anne Frank museum (which was interesting) and hung out with them on Sunday night.

Funny, I'm almost positive this band is from Detroit!!

Some friends we met from Australia, taken at the Little Buddha which is a really cool place

Having lunch at one of the many outdoor cafe's

Of course there are some elements of Amsterdam that are pretty striking and quite different from what we have in our major cities. This brings me to the Red Light District. I had heard about it several times and pictured a seedy, dirty place but was surprised when it turned out to be neither of those things. Yes, there are certain areas where there are prostitutes in windows and the smell of marijuana wafts down the streets constantly but never did I ever feel unsafe or sketchy. I did feel weird walking down the thing streets and seeing these young beautiful girls standing in the windows advertising themselves and wondering why in the world they were subjecting themselves to this… But then thought about the Craigslist scandal here in the states where girls are being forced into the sex trade by thugs literally not being able to leave their hotel rooms and being abused etc. I don’t know, I don’t advocate prostitution and sincerely felt sad for these girls but at least they’re not being abused and the trade is tightly regulated. Plus, back in 2006, the city bought back one third of the buildings that were being used for prostitution and required the new business to be something besides prostitution, i.e. a restaurant, bar or my next topic, a coffee shop… Yup, not only can you go in and order a delicious café, you can order marijuana from a menu! This trade, like the prostitution trade is pretty tightly regulated and definitely a part of the culture here which I think is one of the main reasons a lot of tourists visit. In fact, the locals were really skeptical when they asked me what I was doing here and my answer didn’t include prostitution or spending all day in the coffee houses. It is really fun experiencing a different culture and saying Amsterdam is different than home is an understatement…

This is the red light district! If you look closely, there are people of all ages walking around and it's not much different than other parts of the city... You see the red lights when you pass some of the alleys that run parallel to the street. The coffee shops are everywhere, even outside the RLD.

All kinds of people walking around the RLD

Inside BABA coffee shop, don't breathe in, haha

One of the coolest things to me is the fact that the main form of transportation here is the bicycle! I actually rented one today to buzz around the city one last time and it was so much fun! Someone said that there are over 100 million bicycles in Holland and I can believe it. It’s pretty crazy though as the locals ride their bikes so fast and you really have to be careful not to get run over while walking around! In fact, I was more worried about getting hit by a bike than a car or tram. When I rented my bike, I really had to get used to it and was constantly getting passed on the paths by the locals ringing their bells at my slow ass! I was thinking to myself as I was riding today how cool it is that they ride bikes everywhere as the air is so much cleaner, they’re not dependent on oil from terrorist countries and there’s a certain aesthetic beauty about people riding around on bikes in such a scenic city with all the beautiful buildings, churches, cobblestone streets and the canals which are everywhere. The canals are a great source of transportation as well and seem like a really nice thing to do with your significant other on a romantic occasion.

Bikes everywhere!!

Taken right across the street from the hotel, notice the almost full moon above the monument

One of the many glass top canal boats in the city...

Anyway, I’ve been able to enjoy this while feeling relatively well except for a couple of bouts of nausea/vomiting (probably from getting my pill schedule a little mixed up because of the major time change) and of course the chronic back pain.

I could really get used to continuing to travel outside the country like this and hoping for another trip to somehow come together soon! Sean mentioned I can use his buddy pass whenever I want so I might plan something soon, say after the holidays.

Thanks for reading this long post and hope everyone is having a nice week :)

Cheers!

Back Home...

2010-10-12T08:07:00.012-07:00

New York was a blast!! My platelets we're above the threshold so no need to do any stair climbing this time (actually I did, but it was proactively before they took my blood the first time). Dr. O'Connor addressed the nasty back pain on my off week from the the pills by prescribing me a fentanol patch to apply a day before my last dose. Hopefully it works and better yet, whatever it is that's causing the pain decides to go bye bye...

As far a activities in New York this time around, there were some interesting stories. One, involved taking a bike around Central Park. I was trying to rent a two wheeler and there were plenty of offers... However, most required a two block walk to go pick it up and most were over $15 an hour. To my surprise, I came across a woman who offered to rent one to me for $15 for two hours, plus, she had "her" bikes waiting right at the entrance to the park -- score right?! So, I followed her over and she waves to an Islander looking guy and he proceeds to walk the bike over to me. It was a pretty decent Specialized Hybrid and I was happy. I then fully expected to give her my license, a credit card, my car keys, anything for collateral along with signing some type of contract or something. To my surprise again, she required none of these things -- collected my $15 and walked away. The whole thing seemed kinda sketchy if you know what I mean... So, for the first 10-15 minutes, I was envisioning some pissed off bike owner seeing me riding his bike, coming over and beating me over the head with a baseball bat, yikes... There was no way that this was her or anybody in her posse's bike. So, after the threat of that faded, I had a nice relaxing stroll around Central Park and probably could have taken it to my next destination but my morals and the need to preserve my Karma wouldn't let me! I figured out how to get back to where the transaction went down and fully expected nobody to be there but sure enough, there was the woman with a look of surprise on her face. As I was getting off the bike to hand to her, she shocked me by saying "are you sure you don't want to keep the bike"?!! I just nodded my head and got the heck out of there, crazy...

Me at Central Park with the mysterious bike!

Ah, drink it in!!!

So, from there, it was off to the MOMA which was really great. It's four levels and while some of the stuff is a little too far out there for me, I really enjoyed the third (photography) and fourth (classic paintings) floors. In fact, I think I must have taken a hundred pictures of all the original Van Gogh's, Picasso's, Diego Rivera's, Monet's, etc... All in all, it was a great day!

You have it all at the Museum of Modern Art, from a huge Monet painting...

To the famous Andy Warhol soup can piece...

Also had a chance to check out a couple of great bars with my friends one of which is in the top three oldest pubs in the city. It's called the EAR bar and was built in 1817. The reason it's called the EAR is because the lights on the curvy part of the B burned out several years ago and they never replaced them! Had a chance too to check out the lower east side which is more of a younger crowd but still a lot of fun.

The "Ear" Inn, est. 1817

So, this week is all about resting up for what I hope is a trip to Amsterdam this Friday. My buddy from Seattle Sean is facilitating the whole thing but there's no guarantees we can go as it all depends on available seats on the flights going out there. Kinda crazy being on standby for Europe but that's how I roll these days I guess!

As soon as I know for sure, I'll make sure to update.

Cheers!

Back in NYC!

2010-10-06T16:43:00.006-07:00

Just got up to my room at the Hope Lodge and felt compelled to do a quick post...

They have journal books in some of the rooms and as I was setting down my room key, wallet etc. on the desk, decided to open it and this is the passage I opened to, pretty neat :)

If you left click on the picture, it'll blow up so you can read it. I guess that's why they call this the "Hope Lodge"!

So, tonight I relax, watch some baseball (Roy Halladay just pitched a no hitter for the Phillies, wow). Seeing Dr. O tomorrow at 12:45. Hoping my platelets cooperate this time and the SAHA gets to work so I can get some relief from this back pain..

This is my corner! Feels different here now that it's getting dark earlier... I <3 New York :o)

Thanks again for reading!

Sunday Update

2010-10-03T20:40:00.005-07:00

Not a whole lot to say tonight, just thought I'd write a little since it's been a week...

I took my last handful of pills on Wednesday and while I have more energy, my back has been aching something fierce. I've noticed a pattern has developed of increased pain on my off weeks from the pills which tells me that the drug must be doing something. The pain is pretty bad though, bad enough that I can't sleep unless I increase my pain meds, ugh. It is nice though not having to force 16 horse pills down before I go to bed... The pain is in the normal spot, the right mid area of my back. Naproxen also helps but I can't take too much of it because of my platelets being so low. I took two the other night and the next day couldn't stop my nose from bleeding, pretty freaky.

I met with my Neurologist earlier in the week to follow up and see if she could do anything about the cramping in my hands and calves. Just recently, it got pretty bad a couple of mornings. The pain is so intense that I liken it to being shot (although I've never been shot). She wanted to try mild "interventions" first as she called it in having me increase my vitamin D and E intake plus Calcium. She also told me to drink a lot of gatorade type drinks plus tonic water and so far it seems to be helping. Unfortunately, she's determined that I have permanent nerve damage in my feet though as I still can't feel my toes or really bend them for that matter. It's weird, even though they're numb, they're still super sensitive if that makes any sense. She literally could take a pin and poke it into my big toe and I can't feel it but if I step on something or somebody or something (like my dog) steps on them, I feel like I'm going to go to the moon, very weird...

Had a chance to check out "The Social Network" this weekend. What a fascinating movie! If anyone who reads this is on Facebook, you definitely need to see this movie.

I've also had a chance over the week to catch up on my HBO shows on demand, Entourage and Hung and they didn't disappoint. Hung especially stood out as they really stepped up a notch the second season and it's all shot here in the D! Speaking of another show shot in the D, Detroit 1-8-7, I've watched the first two episodes and I'm still trying to get into it. I'm wondering if it's because there have been so many shows of it's kind over the years... I'm waiting for something to suck me in besides the fact that it's also shot entirely in Detroit. We'll see...

I think Gomez is finally over being hit by a car, ha! Him and Chili have really bonded and they've been playing like crazy. It's so funny watching Gomez push Chili's buttons by trying to jump up and bite her ears. Chili just swings around and hip checks him then whacks him a couple of times with her paws. She has amazing paw dexterity! I've gotta say though that little Gomez does not quit! Sometimes he manages to sneak right underneath her and bites her hind paws. I love watching those two go at it! It's harmless and it totally wears the both of them out. I'm going to miss the G man when Jackie comes to town to get him in a couple of weeks :(

Chili and G having their first shower together!

Since they were nice and clean, I had em up on the bed :o)

Anyway, that's pretty much it for now. I leave for New York on Wednesday and will be staying through Sunday. I want to get to some museums this time and thinking of maybe getting into see Letterman. We'll see how things shake out.

Finally, there's a good chance I might be going to the Netherlands on the 13th! My old buddy/roommate Sean from Seattle is back at Delta airlines and out of the blue messaged me and asked me if I'd be interested in going to Europe on one of his buddy passes. So, if everything works out (we're basically on standby) I get to fly (possibly first class) to Europe for $150!! The plan is to land in Amsterdam, explore there and maybe jump on a train to check out Belgium, Germany, Prague, whatever... I don't want to get too stoked yet because it might not happen if the flights are sold out. Plus, I checked my passport and it was expired and not sure if I'm going to get my renewal back in time anyway. Keeping my fingers crossed!

Alright, I'm out for now... Probably won't update till I get back from New York.

Happy Monday!!

Great Thanks...

2010-09-26T22:09:00.010-07:00

I had the honor of attending a football game on Friday with my family that raised thousands of dollars for cancer research. Our family friend Karen and her son John was nice enough to include my sister and I :) My Mom couldn't do it due to just having surgery on her foot. So, we were able to join around 100 or so other survivors and were brought onto the field before the game and cheered on by the crowd! It was a pretty surreal experience (for more ways than one which I'll explain later). Anyway, all of the players and coaches wore jerseys with each survivors name on the back and Nicole and I were represented by the coaches. After the game, the players and coaches gave their jerseys to us and The Lymphoma and Leukemia Society donated light the night balloons that were released into the air... It was really cool watching the balloons fly off with the big orange moon in the background. All in all, a really nice event. To anyone who's reading this that donated, it's much appreciated :) I also wanted to thank my Mom for getting the word out for the donations.

From left, my Mom, Karen (both have sunglasses) and Rich

Nicole and I before we walked out to the field

Nicole and I waving to the crowd as we walked out onto the field with the other survivors/caregivers.

After we got our Jerseys joined with John (who is a coach), his buddy with the beard (can't remember his name, doh! nice guy...) my Godmother Aunt Shell next to me) and my cousin Susanna in front.

The balloons...

So, as I mentioned earlier, the night was very surreal. Surreal in the fact that here we are out there being honored and applauded for "surviving" cancer... I've written before about the disconnected feeling you sometimes have with the rest of the world and it really hit me as the crowd stood there and cheered for us. Don't get me wrong, it's not like I didn't appreciate it, it just feels weird, hard to explain...

This brings me to the other surreal experience... Earlier, before the game, I pulled in to the parking lot to wait for my Mom so she could give me my t-shirt. I had the dogs with me so I wanted to take them out in the field for a quick walk before we went inside. Right as I got back to my car, my Mom called and told me where they were. Meanwhile Gomez, who was on a leash, somehow managed to pull out from his collar and proceeded to race off through the parking lot and around the corner, ugh. He's been escaping lately and once he's gone, it's hard to get him back because he doesn't come when you call him and he's fast as hell. So, with Chili still in her leash in my hand, we take off running after G. He's nowhere to be found and just outside the parking lot is a busy road, yikes. I had two things that suddenly struck me, first, he's going to get hit by a car, or, because his tags are on his collar which was now laying in my car, someone is going to find him and keep him because there's no contact information on him. Either way, I thought he was gone for sure. I then looked across the street and there was a young girl who was trying to get my attention. So I could hear her better, I stopped traffic and ran across the road. As I got closer to her, I noticed that she was pointing back across the road and as soon as I turned around to look, there was G making a mad dash toward me. I looked to his right and there was a woman driving a mini van (oblivious to him) and speeding forward right toward him. I screamed out NOOOOO and from what I could see, she hit Gomez as she was trying to slow down with the right corner of her bumper. I thought he was toast. Sure enough, he bounced up and started running the other way, unbelievable... I then stopped traffic again, with Chili still with me and ran across the street after the G man. By now of course, he was really freaked out and wouldn't let me get close to him. At that point, I decided to unleash Chili and she went right after him. It was almost like she was able to calm him down as he just stayed there and let me come and grab him. He was covered in burrs from getting down into the riverbed next to the road and shaking like crazy. I put him back in the car after making sure he was ok (he ate a bite of pizza and drank some water). It was then that I discovered that while all this was happening, I dropped my keys somewhere, what else could go wrong! Luckily my Aunt Shell, Sister and Susanna showed up and said prayers to St. Anthony and within minutes, I found the keys!

I haven't experienced that level of anxiety for at least a couple of months, haha. I mean, I of course really like the little guy but was more freaked out because he's not even my dog!

So, I had to break the news to Jackie and couldn't sleep for the rest of the night thinking he might have a head injury, bruised lung, something... I called the emergency hot line when I got home and they said as long as his gums are pink and he's not having trouble balancing and walking, his head should be ok. To be safe, I took him to the vet the next morning and after $175 later, was proclaimed to be ok except for excessive gas in his intestines! Thank God...

So, Saturday was pretty much shot because of the no sleep the night before but had a chance today to catch the last home game at Comerica Park and the Tigers which they won and was a lot of fun.

Of course, the Lions lost, surprise!

The adventure continues...

The Moth

2010-09-23T22:13:00.012-07:00

Just got back from a really cool event that took place at the historical Gem Theater in Downtown Detroit. The theater is something else as it's the largest structure ever to be moved in one piece (well, I've been told that but not exactly sure how accurate the information is ;). Back when they were building the new baseball stadium, Comerica Park, there were a couple of buildings that were within the site limits that if nothing was done would have to be razed. While there were buildings that didn't make it, there was a strong push to preserve two of Detroits historical landmarks, The Elwood Grill and The Gem Theater. They literally hoisted the entire theater up onto rollers and rolled it down the street! It's actually now in a better location closer to the theater district in the city.

Anyway, back to The Moth. I just pulled this from the website and couldn't explain it any better:

What is The Moth?

The Moth, a not-for-profit storytelling organization, was founded in New York in 1997 by poet and novelist George Dawes Green, who wanted to recreate in New York the feeling of sultry summer evenings on his native St. Simon's Island, Georgia, where he and a small circle of friends would gather to spin spellbinding tales on his friend Wanda's porch. After moving to New York, George missed the sense of connection he had felt sharing stories with his friends back home, and he decided to invite a few friends over to his New York apartment to tell and hear stories. Thus the first "Moth" evening took place in his living room. Word of these captivating story nights quickly spread, and The Moth moved to bigger venues in New York. Today, The Moth conducts eight ongoing programs and has brought more than 3,000 live stories to over 100,000 audience members.

Why "The Moth"?

The screen around Wanda's porch had a hole where moths would flutter in and get trapped in the light. Similarly, George and his friends found that the characters in their best stories would often find themselves drawn to some bright light—of adventure, ambition, knowledge—but then find themselves burned or trapped, leaving them with some essential conflict to face before the story could reach its conclusion. So George and his original group of storytellers called themselves "The Moths". George took the name with him to New York, where he hoped that New Yorkers, too, would find themselves drawn to storytelling as moths to a flame. They did. With no advertising, through sheer word of mouth, every show to date has sold out in 48 hours or less.

So, that's the history of the event and the cool thing is, so far, it's only in 4 cities; Chicago, New York, L.A. and The D! The stories were great (all 11 of them) and the gal that won is now off to New York to compete in the championship (or Moth Ball as the event is called ;)

It was also pretty neat being downtown tonight as they're shooting the new Transformers movie just a couple blocks away from where I was. They had this huge space ship looking thing laying in the middle of the street with all these burnt out cars (and probably incorporated one of the burned out buildings as well, haha).

I don't remember a buzz like this in Detroit since I've lived here. It's really cool watching things slowly turn around here and I couldn't be happier for my home town.

So, on a slight downer note, today was a pretty big day for me in that I found out that my private health insurance is going to expire Oct 31st. Yes, the very thing I was paying my hard earned money every month is going to expire because I can't work. Kinda ironic that it's called insurance isn't it? How is it that insurance is allowed to "expire"? It flat out doesn't make any sense and seems a lot like fraud to me. I mean it seems logical if you always stayed current on your payments when you were healthy it should be there for you when you get sick and hopefully be there if you're still sick and can't work right? I upheld my end of the bargain, how is it that the insurance company can just back out after two years? If someone can give me an honest logical explanation, please enlighten me...

Thank God I have the option of going on Medicare. What would I do if Medicare didn't exist? To those that are affiliated with the Tea Party or the Right Wing of the Republican Party, what would you do if you were in my spot? It just pisses me off that people can loosely throw around how entitlements need to be eliminated but the truth is, without them, people like me (and my sister) would be up shit's creek without a paddle. Same thing with Social Security (which I count on every month). If George Bush and the then Republican Congress had their way, they would have written laws that would have encouraged people to invest their Social Security money into the stock market. The same institution, Wall Street which was systematically stripped of all it's regulations/laws led by the former Republican Texas Senator Phil Gramm. So, essentially, mass amounts of money (probably some of mine as I was pretty naive about that stuff back then) would have gone into these crazy unregulated financial scams called derivatives and subsequently lost forever when the mortgage/lending crisis (again caused by deregulation) hit thus sending the economy into the Great Recession.

Again, with the likelihood that these same people are going to be controlling Congress again, I brace myself and shutter to think how much more damage will be done...

I guess you could say that I'm a little disenchanted right now with government being run by big business. The unfortunate thing is we can't vote big business out of office... I'm not advocating socialism or anything like that but I just think there has to be rules to protect the vulnerable from the powerful.

I guess you could say that suddenly I feel kinda vulnerable and I have enough of that in my life already, ugh...

Anyway, I'm not going to apologize for my rant this time, it's just how I see it.

I've got to make the phone calls tomorrow and find out how things are going to change and I'm hoping the financial impact isn't going to be too harsh. No matter what, I will find a way to continue to enjoy my relatively good health right now and of course always stay prepared for things to go the other way...

Now that I've got that off my chest, it's time to wrestle with the dogs for a bit as Chili and I have had a visitor for the last couple of weeks, Gomez or G for short.

How could you turn down a face like that? The people that were watching him previous to me decided that they weren't going to give him back to his rightful owner so I agreed to watch him to prevent this from happening.

He is a handful though after pooping, peeing in my house and today running away three times. Hard to get mad at the little dude though...

Tomorrow should be fun as I'm going to a football game slash cancer fundraiser. My Mom (who's also a cancer survivor) and her very good friend Karen made my sister and I part of the contribution drive and were able to raise a good amount of money for the Cancer Foundation (I think). It's pretty cool to know there are so many people out there donating their time and effort to raise money and awareness for cancer.

And, finally, to those out there that I know are praying for me, I can't tell you how much I appreciate it and whatever you're doing, keep doing it!!

Long Day...

2010-09-16T19:52:00.007-07:00

I started this when I returned from New York, was too tired to finish it, finally have some time so here it is...

Sitting here catching up with Entourage after returning from New York. I had to squeeze the trip into one day after a mix up with my lodging. What a long weird day...

Got up at 4:30 to catch my 7:00 flight and as I went through the security line, someone stole my wallet! Because I was half asleep, I neglected to take my ipod out of my pocket thus setting the alarm 2-3 times in a row. I first thought it was my wallet and I placed it by itself in one of those bins. By the time I discovered it was the ipod, a few people had gone in front of me with their bags. As I went to collect my stuff, my wallet was missing, noooooo! I turned to the security guy and told him what happened and he said he knew he saw it and proceeded to look through all the stacked bins. Once we discovered it wasn't in there, a police officer was called and we went over to the monitors. They backed it up to where they saw me place my wallet down and tracked it through the machine. We followed it through where first a man picked it up, opened it and put it back down. Right after that, his wife picked it up put it into her purse and walked away. We had people in hidden places working the monitors for us and froze the image of the woman. The officer then told me to follow him as the hidden security working the cameras throughout the airport directed us to where the culprits were. Even though I was so tired, my blood was boiling at this point. I had 15 minutes to catch my plain and we were walking the complete opposite way down the new terminal. The pressure was on because if I didn't make this flight, there was no way I was going to get to New York and be able to stay on schedule with my trial. Not to mention, my original trip had to be changed as my lodging got all screwed up and had to pay an extra 400+ dollars to re-book. I guess I could've probably got on the flight there but how was I going to get back home with no ID?

Anyway, the officer got a call and we had a direct location of the klepto lady. We walked up to them and the officer confronted her making her reach into her purse. Sure enough, there was my wallet which she handed to the officer. He then gave it to me and I wanted so much to stick around and get her explanation or excuse but I had to bust it back across the terminal to catch my flight. Thank God I made it...

So, after the flight and bus ride to NYU, all I needed to do was get my blood drawn, see Dr. O'Connor and get my pills. Not so fast...

Sean, the trial coordinator came out the door into the lobby and pulled me aside. He told me that my platelets were below the threshold of 50,000 (they were at 45,000). As you can imagine, I was a little stressed... Sean thankfully had a plan however. He's had patients have low platelets before and for some reason, if you do some physical activity, it causes them to go up. So, time to do some stair climbing! He asked me if I could do a couple of flights and I of course said no problem. I had a lot of nervous energy and instead of doing two flights, I decided to go all the way down to the first floor and did 7 flights! I was totally out of breath when I got up and they immediately took my blood again. Success!! My platelets went up to 52,000 and I was able to get my pills and start cycle 8, whew...

From there, I walked to Grand Central Station, hopped on the bus and rode back to LaGuardia where of course my flight was delayed for 2 hours because of storms but eventually made it back home totally shot. Now you can understand why I couldn't finish my entry that night!

So, yesterday I went down to the junkyard to pick up some more parts for my car, ran some other errands and went to a concert last night :) A friend of mine had tickets for the Deftones and Alice in Chains. They both totally rocked and at the end, Jerry Cantrell from AIC whipped out a signed drum skin out to the audience like a frisbee. I watched it as it flew majestically over the crowd thinking there's gonna be some lucky s.o.b. that's going to catch it. As it carried over the crowd, it tilted and started coming our way. I felt like I was at the park playing disc as I now was tracking it coming over to our section! I then reached up as it was flying over my head and snatched it out of the air! I had to fight a couple of guys off that were behind me as I dropped it at first but with quick hands, reached down, whipped it behind my back and that bad boy was mine, hells yeah! What a great way to end the night :) I was pretty much a celebrity from there on out as everyone who walked by me and saw it in my hands was giving me high fives and whatnot. Good times!

So, to celebrate my Frisbee catch last night, I went and played some disc golf today (not with the drum skin, haha). Gonna go to my little downtown tonight to check out the DIY festival in Ferndale so I'm definitely keeping busy.

Tomorrow may be the day to rest, ahhh...... :) Go Lions!!