"The Cost of Living"

For me right now, it's getting pretty expensive. I'm not talking about the price of groceries here... I'm talking about what I'm giving up just so I can "live".

I don't want this to come across as a whiny rant but thought it might be interesting to someone looking in from the outside what it's like to be on clinical trials with refractory cancer.

First of all, and I mentioned this previously, my legs aren't cooperating! I figured out where the problem is and it's my calves. I never realized how important those muscles are to walking. I tried to do some toe raises earlier and I can't even do one! I can do half raises and plan to work to strengthen here if it's possible. For now though, I'm kind of walking around like a duck, walking on my heels. I feel pretty silly but oh well ;)

Secondly, I've lost most of the strength in my hands. I went and bought some wood and built a tv stand tonight and I could barely squeeze glue out of the tube, crazy. Even holding the cordless drill was challenging.

By the way, my surfing career is over... Tried to go out yesterday and it wasn't pretty. Put an ad on craigslist today for my board and hoping I can get what I paid for it.

I have a newfound respect for people who have physical disabilities. I'm learning to compensate for these shortcomings but it's difficult and frustrating.

I'm not sure how much worse this can get though and that's the scary thing.

This brings me back to my opening comment, how much am I willing to pay to live? Am I really living if I lose my ability to walk completely and lose the ability to use my hands? The hardest thing is knowing that if I walk away from this trial (no pun intended), there's a pretty good chance that another trial may not work to contain my disease. Then what am I left with? It's a pretty crappy decision to have to make to say the least.

I'm definately not alone struggling with this SGN-35, there are several people in my Hodgkins community who are struggling, even more than me. In fact, not everyone is doing SGN. I have a friend who's on a trial called SAHA (that I'm not eligible for because I've already had it) and she lost almost 20% of her body mass in three or so cycles due to not being able to keep anything down, even the chemo pills. I don't know what is worse and when it gets to be this bad it really doesn't matter...

With that said, there still are a couple of cards I can play if I choose and one I'm aware of (Lenalidomide) supposedly has a really low toxicity profile so that's good. Not sure of the objective response though. The problem is it's only offered in St. Louis so I'd have to commute. The other is RAD001 and I know nothing about it except the objective response rate is 50%, flip the coin...

There's still a chance the Lyrica will have some effect but I've been taking it for almost two weeks now and think it should be offering some more relief. I think it's helped a little but something tells me that this probably won't be the answer. It might be time to look into alternative therapies like accupuncture (tip from a comment, thanks!) or massage. At this point, I'm willing to try anything...

With that said, I'm still enjoying life to the fullest, ha!! I had a great day today hanging out by the pool, soaking up sun and reading. I went and picked up a blender and going to start making healthy smoothies to nourish and help me keep my weight up. My buddy Lee remarked on how he's been doing wheat grass with benefits so I'm gonna give that a try... I've always loved smoothies! I'm also getting back into cooking and have been making some killer dinners the last couple of nights. Being at home and having Mom's cooking available every night spoiled me! It's a good amount of work if you want to eat well and have a lot of respect for housewives (like my Mom) who prepare nice meals everyday and also to those Mom's (or Dad's) who somehow manage to work and yet still prepare good home cooked food for their family.

This is actually my first post using my new computer and have to say it's going to take me a while to get used to this keyboard. I didn't realize how nice the keyboard was on my last laptop or at least for me. The new keyboards are called "chicklet" keyboards and I kind of feel like I'm typing on chicklets... I'm a heavy typer and I guess I need to lighten up a bit which shouldn't be too hard since I can't feel my fingertips! I'm starting to like the computer though and sure it'll grow on me as I get more and more used to it.

Anyway, that's all I've got for now. My heart goes out to all the people in Haiti... That earthquake has been really devastating. The presidential palace in Port Au Prince is pretty much collapsed. It'd be like the White House collapsing here. As if life wasn't hard enough in Haiti, my God... It's the poorest country in the Western Hemisphere. There's a pretty big Haitian population here in Delray and I'm sure they're extra thankful that they're here and really sad if they have relatives still on the island.

Things can always be worse...