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

Time has flown...

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

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...

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