Well, I think I have my head back together after a couple (or more) rough days. Funny how your mind plays tricks on you when your body is doing things that aren't very comfortable or normal. This is still pretty much the case but I evolve and learn how to deal with new challenges as they arise...
So I'm up late again, unable to sleep, listening to this great mellow band called Bon Iver. Hoping their soothing sounds will kick in my circadian rythms and let me drift off to sleep (or the Ambien kicks in whichever happens first)!
It was brought to my attention that I'm probably not ready to start my epic road trip as soon as I wanted to... I have to agree that I'm not sure if I'm physically or mentally ready to jump in my car and drive 7000 miles! That said, I think if I delay it for a few weeks I should be in much better position to enjoy it that much more.
One good thing that has come out of this whole ordeal is I realize now more than ever that I'm obligated to help people out who are in my similar situation (i.e. relapsing primary therapy for Hodgkins). The reason I say this is that there are so few of us out there it's so hard to find useful information and have had friends who seemingly were rushed through their treatment only to find that it may have not been the best option for them. Because Hodgkins is so rare to begin with (only 8000 cases diagnosed each year) and 90-95% of those cases will be cured with first line treatment, there isn't an overwhelming pool of information or support out there for those of us who happen to fail first line treatment and need to go with a salvage option. While those salvage options are slowly expanding, there still aren't enough out there as one size doesn't always fit all for each patient. That brings up another point. Because there are so few of us who are considered "refractory" (as of the latest PET scan, I guess I'm no longer in that category knock on wood) there are even fewer options if you fail an auto SCT. There are a couple of promising new trial drugs out there, SGN-35 (the company that makes it is right here outside of Seattle) and a couple others. It's just that drug companies aren't as motivated to come out with as many new drugs for such a small pool of patients and that to me is sad. It's going to take some high profile folks with refractory cancer (like Arlen Spector) to speak out and demand more research be done on this rare but number 1 cancer in young adults. Did you know that Mario Lemieux (the hockey star), Rowdy Roddy Pipe (WWF) Paul Allen of Microsoft have all had Hodgkins? I'm sure these guys have done a lot to bring awareness and hopefully research funds to the disease but obviously more must be done. When I figure out how I'm going to help, it'll be a satisfying day for me...
As for life in general, continuing my quest to get into shape with another killer day at the gym today. I'm feeling much stronger and able to increase the weight on the machines. It was pretty embarrassing the first few times doing reps on the machines with little or no weight! I think most of the women were using more weight on the machines than I was (not to sound sexist!). The worst part about it I was actually straining pretty bad! Yesterday, I cam home from the physical therapist who's helping me with my Lymphadema in my right hand and she suggested I do some squats at my house with no weights. Easy enough I thought... All I did was squat two sets of 25 again with no weight. I swear to you today I could barely walk!! I mean, I have a hard time getting off the couch! I still can't believe I was able to go snowboarding with such weak legs! Crazy...
Finally, can't wait to try some tips I got from Caesar the dog whisperer tonight! He was in a womens correctional facility where they would take "last chance" dogs to see if they can be rehabilitated. I really respect how the guy can take the most problem dogs and turn them into well behaved "pack animals". The man definately has a talent and wish I could get him over for a private lesson with my dog Chili. I guess I'll keep watching his show ;-)
By the way, shout out to my cousin Matt who with his team made their first drug seize at the Arizona border where they were able to confiscate $460,000 worth of who knows what... Also wanted to congratulate my Sister for getting on Facebook! I think she's really enjoying it and I'm happy for her. Finally, wanted to send positive vibes to a fellow Hodger Marsha who's having a hard time after her stem cell transplant failed and is now searching for an effective clinical trial that'll get her disease under control so she can feel better. It seems like everything they've tried on her thus far hasn't worked. I know there's something out there for you Marsha, keep the faith!
2 comments:
Wow - that was a loooong post for someone who should be asleep!
Sounds like you're being very sensible about the road trip - it would be a shame to do such a journey and not get the most out of it because of feeling under-par.
Continue to gain in strength and look after you and yours (and don't be too hard on Chili - 'perfect' dogs aren't always as loveable as the rascals!!.........Vx
If you come to Florida you should stop in St. Augustine, especially if you've never been. It's an interesting little town! Oldest city in the U.S. Beautiful beaches too. =)
Post a Comment