I’m living in interesting times and the Chinese are right: it is both a blessing and a curse.*
Over the next month, I need to determine what comes next. Do I follow a conservative line—Cripes! I cringe every time I define myself with that word, no matter what context—or do I throw caution to the wind and hope for fate to give me that elusive Hollywood ending?
Of course, it would be an easy decision to make if my test results were clear, but it seems my body is addicted to drama and the adrenaline rush that comes with it.
In the win column is one simple but amazing fact. I feel better. Whether from Pasireotide LAR or the steady stream of hormone injections, I cannot say, but something is pushing my energy level higher, and I feel much less pain in my muscles and joints. I was a green belt in karate and Ronald Regan was president the last time that I felt my body wasn’t actively working against me, traitorous little double agent shithead that it’s been since 1987. Although I’ve yet to write about it, I’ve even trained with my old karate club on two occasions this month and not looked like a doddering old fool.
But other results are less encouraging. We had hoped for a dramatic reduction in tumor size, that a beautiful tall ship with white sails unfurled would sweep along the horizon and pluck me from the dark, angry Atlantic waters (he wrote colorfully, trying to wring more angst from this post with potent imagery). But, alas, I will be left to tread water. (Damn it all, Kristina’s not home, and I don’t know if I should leave this paragraph as is).
Pasireotide shows enormous potential for rare hybrid neuro-endocrine tumors, and for the cancer that killed my mother (and several other devastating illnesses), but my earlier musings on Facebook have proven correct. I may have avoided the worst side effects of treatment, but I’ve also missed the party where they handed out cake and ice-cream and poured Billecart-Salmon Brut Rosé into crystal flutes. It’s unlikely to get any better for me.
My tumor is stable, and may or may not be growing, but it remains active. One crucial hormone continues to be secreted at levels that are higher than desired. The migraines are now coming every second day, and often three and four in a row. The pressure inside my skull makes me feel as if Lord Voldemort is gripping the left side of my face during every waking hour. (I tried punching him in the nose to make him let go but, as you all know, he doesn’t have a bloody nose!)
And today, during my sixth injection, I learned that last my field of vision test showed a substantial depression, coming after several tests that showed a steady deterioration in results.
I’m not concerned. Well, I am, but just a little. Kristina has suggested that when I do poorly on tests, it reflects badly on her, and I want to keep my girl happy. She was expecting me to do better and I hate letting her down.
But how accurate is the test? That, my friends, is hard to say. I find these 30-minute eye exams boring, and I know that my level of fatigue affects performance, perhaps dramatically. Today’s results, after a difficult week on a new job, conducted by a clinician who hasn’t tested me before, will be even worse. Half the time, I couldn’t see that damn light until it was right in front of my face, but I think part of the reason is she moved it so slowly. I perform better when the light streaks like a shooting star.
So I really don’t know. And I don’t like not knowing.
My initial thought is to seek permission to remain in this trial for another two years, or until the drug comes to market.** But if my eyesight shows any real deterioration, or the migraines continue unabated, then all bets are off, and I’ll go under the knife. The thought of losing some or all of my vision scares the bejesus out of me because i neber learmed to toich typw, so how coild O stoll be a writre if i coyldn’t see>
I’m not frightened or nervous. I don’t have more than I can handle. But I hope many of you will join in wishing for a happily ever after for Kristina and me.
I may not deserve it, but I sure as hell know she does.
* I know that most of you are wondering when we’re going to paint our GD office. It’s a project for September or October.
** The medicine for each injection likely costs more than $1,000, so my butt has amassed greater personal net wealth than I have. Cheeky devils! :-)
Update: I changed the wording in this post to indicate that I don’t know if my peripheral vision has been affected. I simply don’t know, and the decrease that’s been measured so far is noticeable, but still within the test’s margin of error.