Maybe I'm just whistling past the graveyard, but I'm starting to recognize my new role as a cancer survivor instead of a current cancer patient. Technically I'm both, but I guess a transition has been coming for a while. There are no agressive treatments, no 30 / 60 / 90 day agendas, no 'next phase' in my treatment. Yes, there are options and considerations, but there's no definitive course of action looming over our heads.
And so, Ed and I have to get back to living. I can't remain the zombie I've been for the last 18 months.
Now I realize that zombies don't actually exist, but I am struck by this philosophical parallel: Cancer patients often become, almost literally, the undead. We're given shocking news, and from that point forward, our primary focus is to stumble aimlessly with outstretched arms in search of something vague and unexplainable. We mumble, moan, and shuffle along with no clear path. We become zombies and this isn't "Thriller". We're given stage blocking, but there is no music or choreography.
In any case, I believe springtime, our imminent relocation to Canada, and my 'near CR' couldn't be better timed. We have to wake up and smell the cappuccino. It's time to liberate ourselves.
A couple of you asked questions about yesterday's revelation. Here are most of the answers:
1) As to "Now what?" and "Are you off the drugs?", I'm going on a maintenance program of Thalmid (Thalidomide) starting Monday, May 5th. This program will replace the Revlimid program I've been on for the last 2 months. Obviously the Revlimid worked quite well against the cancer, but the severe rash is a detriment to the treatment plan. The Thalmid dose will be 50mg per day, or 1/4 of the original dose that made me hate the drug. We still have the future option of an unrelated donor transplant.
2) As to Hammer's questions:
What's the impact of 'overdoing' it?
There really isn't any specific impact. I'll simply be tired or stressed exactly as any normal person would. There are known complications of the steroids, such as joint deterioration, redistribution of body fat, and muscular atrophy, but these are the things I need to fight against, not accede to.
Can the type of cancer you have be triggered by heavy exertion?
No, this cancer can't be born of work. There is one effect of the cancer that I have to watch for, and another effect from some of the chemo I've been taking, but I can generally exert myself as much as I choose.
Is there any chance that a highly active lifestyle leads to a higher risk?
As I noted above, there will be two significant concerns going forward. One is that the disease tends to make my skeleton deteriorate. The bones are decalcified by the cancer itself. This causes void areas and general bone weakness that must be considered. In addition, one of the chemo treatments I take tends to turn the bones into something akin to Durock underlayment (a concrete sheet). My bones are brittle/crumbly, not very dense, and will not heal well if broken. It would not be wise for me to continue motorcycle roadracing as my hobby. An accident that I would have walked away from in the past would probably break several bones now.
And regardless, you do need to watch the rest of your health. It would really suck to die of a heart attack now.
Fortunately, my general health is still good. Blood pressure? OK. Cholesterol? OK. No diabetic tendencies. Nothing we're really watching for. I keep telling the docs that if it weren't for this pesky cancer thing, I'd be a perfectly healthy specimen.
But I have to start doing something about my weight. I came in at 180# on the doc's scale yesterday. I was just under 160 not too long ago. The fat redistribution from the steroids has put all this weight on my torso with very little of it going to my legs or arms. I have a beer belly now and it's not from beer.
And so, this becomes part of my plan for living............
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This blog is written by and about a guy with an incurable form of cancer. My purpose here isn't to say "woe is me", but to give insight about my thoughts, perspectives, and experiences throughout this adventure. My name is Andre. My partner's name is Ed. I intend to publish on a pretty regular basis here, but Ed might occasionally pop in with his thoughts too.
6 comments:
Sounds like a plan.
Oh yeah, watch out for buses. You're a prime target now.
So you're taking up breakdancing?
It all sounds good, Andre!
I honestly write this comment with tears welling in my eyes. I am so incredibly happy for you and Ed.
I've been asking Ruth about making a trip to BC this summer just because. She has family in the Spokane area and we made a circular trip through the lower mainland and Northern Washington a couple of years ago. I think we're due again and we'll be able to visit you regardless of where you are.
I'll keep you posted.
Hi Andre,
Googled you up a while back - want to send best wishes and luminous force to you for healing and fortitude.
I road raced in Texas in the 1960s while studying at UT, writing for the Texas Ranger and playing with as many young gentlemen as I could get my frisky hands on.
Didn't mix the worlds as at that time it would have been a very tricky matter (if not an invitation to death - riders like Larry Beale were known to play dire tricks on others for much less conformity to social norms, like sticking their steel shoe in your front spokes to give you a little surprise and slow you down).
I brought a Honda CR-93 back from Japan in 1964 and raced it at the last USGP at Daytona (yecch, what a shithole course) in 1965. Also retrieved a Matchless G-50 when I worked in Cali, Colombia and raced it at forlorn events in godforsaken places like Galveston and Wall, Texas. One of my high ha ha points was the 1966 Austin Sea Festival when I threw Jack O'Leary's TD-1B down the road at a merry speed. I went on to race the G-50 at the Ulster GP and the 1966 IoM Senior TT, where I finished 28th. That was back when almost no Americans raced the Island - may have been the only hohosexual to have done the event, up to that point. Who knows, who cares. Worked as Japanese correspondent for CYCLE WORLD, CYCLE GUIDE etc. in 1969, on the run from the FBI for anti-VN war naughtiness, and after ten years in Vancouver-by-the-Void (good luck up there, Andre) I moved to Asia. Twenty years now in Indonesia, strong roots, still riding, and working with the very first 600cc. Indonesian team in FIM Asian road racing.
Contact me privately and we'll swap ancient racing pix. Hang in there, earthling.
Bakhirun,
I've sent an email to a gmail address I assume is yours. However, if you don't get anything, try emailing me at firstname@lastname.ORG
This address should be pretty easy to figure out since you obviously have discovered who I really am. (I obviously didn't try hard enough to remain anonymous.)
I look forward to sharing histories with you.
Hammer,
You know you're always welcome in our home.
Our new place has two bedrooms and we'll hopefully have it set up pleasantly for you and Ruth. Are you thinking August? Just let me know.
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