Summer is rolling along...

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