moving forward, withdrawing back

hello, friends. i’ve missed you. it’s a remarkable testament to how greatly my health has improved that my three month check-up with my oncologist last week was so “grossly unremarkable” that i didn’t even take the time to post, or even chat about it with my folks. my six month scan will be in may – that’ll be a big one and won’t go undocumented.

and it’s not the only news i’ve failed to mention. i’ve missed a whole mess of opportunities to celebrate the ones i love these past few weeks. my sister, my mom, my late grandfather, my loving wife (not to mention my uncle, the spectacular ms. bacon and more) – all had birthdays, and each deserved their own post as to their extraordinariness. it’s impossible to measure the impact of these aquarians in my life. as a self-absorbed leo, i’ve found myself from day one depending on a bevy of aquarii (aquariuses?) to keep me grounded, honest and in check. they tell me the things i know deep down but am too proud to truly admit to myself. without their guidance, i would be half the man i am today (and obviously re: my mom, i would be zero percent of anything). yes, i am lucky to be alive – though this path of negotiating my illness is one i never would have chosen, as i’ve explained many times, the greatest gift it has given me is the ability to truly and deeply acknowledge and understand how lucky i am that i am joined in life by so many strong, remarkable people. my apologies for the mass, “i love you all” message – it’s the best i can do for the moment.

title, part one: moving forward. kathryn and i have moved downstairs in our shared house. you would think (read: *i* thought) just picking everything up and carrying it downstairs wouldn’t be such an arduous task, but you (i) would be wrong. we also painted, which, due to the new (new to me anyhow) technology of self-priming paint (so awesome!) and some helping hands from friends, the full-spectrum gray (“cosmopolitan”) and the “adobe orange” accent wall went up easily. two or so months ago, i began twice(-ish) weekly personal training sessions with my dear friend captain quinn – thank the good lord i had a few weeks worth of sessions under my belt – if i’d tried to move all our (many) belongings even six months ago, it would have crippled me for days. it’s always a bit of an obstacle course, negotiating communal living, especially now, as a married couple. but we adore our present housemates and even though there are an awful lot of piles to sort through (since we neglected to consider boxing up), once we’re settled in we’ll have more space – kathryn will get a dedicated crafting station, and i’ll be able to paint from home. it’s going to be great.

title, part two: withdrawing back. this past week has been one of the worst in recent memory, and for the first time in quite a while, it’s not because i’m stuck in my head and/or depressed.

the bRAF inhibitor genetic treatment (aka zelboraf) that stopped my disease in its tracks had some pretty unpleasant side effects; most troubling was the debilitating joint pain, which floated from hands to feet to neck to hips to ankles seemingly at random. back in 2011, a NY times article described the great promise of the drug, but it also told the story of a patient who “said the drug caused such extreme pain at one point that “I called in the children and said, ‘I’m done, I can’t do this any more.’ ”” i was there once, and after a particularly unpleasant experience with my first pain management specialist, i found a marvelous man by the name of dr. tim canty, who has since gone on to treat multiple melanoma patients dealing with the same crippling pain. it must have been about 18 months ago that he put me on exalgo, a new (and pricey) time-release pain medication that made a great difference to me, without many of the hazy, sedating effects of previous drugs i’d tried (methadone in particular). because it was a time-release capsule, the narcotizing effects were significantly diminished, as was my inclination towards possible abuse.

but at the start of this month, our insurance changed (nearly all for the better) and the new company decided not to cover the drug (a month’s supply runs near $1000, compared to other opioids which run pennies on the pill). in the past, when i’ve stopped taking medications of this magnitude, i’ve had time to step down, milligram by milligram. this time, i went from 24 mg a day for well over a year to zero, cold turkey. exalgo is hydromorphone – it’s essentially morphine. withdrawal is not a strong enough word to describe the torture i’ve endured over the past week. today is the sixth day and i’m still not back to 100%, though the worst is past. it didn’t help matters that i was fighting (and losing the battle with) a vicious cold; i’d say the best word to describe my week was wretched. there was retching, and there were bugs under my skin, and long, sleepless nights of tossing and turning and sweating out the toxins. thankfully there were no nightmarish babies on the ceiling a la trainspotting (watch with caution).  i’m nearly free of the drug now, but the week is already lost, and with it a chance to wine and dine my lady on valentine’s day (not my favorite holiday, but still).

my body is in a place where the pain relief just isn’t necessary any more – i’m stronger and healthier than i’ve been in a long time – but my goodness, i wish i’d had a bit more control over the process. i’ll be awfully glad when i’m at full strength again.

One Response to “moving forward, withdrawing back”

  1. Anonymous says:

    Oh Jonah, that withdrawal does sound wretched. So glad you have endured the worst of it. Bummer about the insurance not covering it.