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