Grateful...

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

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!

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

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...

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

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...

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