Bit of good news

Last Monday I went to Cancer Care here in Asheville for a bone marrow biopsy.  This involves drilling a small hole in my right hip and sucking out a couple of tablespoons of bone marrow along with a small piece of bone.  They then get sent to a lab where they look for signs of myeloma.  It's an unpleasant procedure though, here in Asheville, they give you a decent dose of happy juice first.  It feels a bit like a dentist hitting a nerve while drilling only 10 times greater.  It also gives you new respect for anyone who has ever had a leg amputated without anaesthetic.
Unlike my usual blood tests where I can read a chapter in the waiting room while they get done, this test takes a week to come back.  So yesterday I was more than delighted to get a brief email from Cancer Care saying " Normal marrow, no sign of myeloma".  Short and to the point.
I don't know exactly what this means in terms of whether I have to keep guzzling expensive medicine forever (fortunately covered, at least for now, by Medicare) but it's better news than many of the alternatives.
Looking back over the last two years, it's been a bit of a slog, more for Susan than for me, I suspect.  It started out with a year feeling like crap during which I got promoted to head of the math department at Carolina Day.  There were plenty of days when I felt like hell and really didn't relish getting in the car to drive to school.  I put it down to the less than wonderful relationship I had with the principal who made it very clear she hadn't wanted me as head of the department in the first place.  Shortly after she told me I was getting kicked out of the math department for various vile crimes such as apologizing to a student for calling him by the wrong name during my first year at the school, I passed out at home.  I don't think anyone every found out why or bothered too much to look as the multiple myeloma outranked it.
It's probably fair to say that the early treatment felt worse than the disease - I lost all interest in school and very largely went through the motions (they'd kicked me out of their health insurance scheme, too but I was fortunately old enough for Medicare.  Obamacare also made it possible for me to get health insurance even though I had a pre-existing condition: without that I would have needed to make a choice between bankruptcy and death - nice.)  I was filled up with drugs that made me suddenly go into hibernation (quite a cool feeling - first couple of times I wondered if I'd died and was now observing) and the dread steroids that kept me awake all night.
It came as a surprise when they told me I was scheduled for a stem cell transplant as I had reacted to the early treatment so well and that was probably when I felt the worst of the lot.  I was told that the transplant had a 95% survival rate - most reassuring - and off I went to Wake Forest Baptist Health for the procedure.  The first couple of days were fine while they removed stem cells from me but then they had a really good go at killing me with drugs that were meant to kill the cancer but weren't too fussy about innocent bystanders.  I spent close to a week in a drug-fuddled funk while the drug soup sloshed around inside me and the lovely people at WFBH pandered to my every whim (which mostly consisted of curling up in a ball and feeling horrible).  After that, all my hair finally fell out with the exception of my moustache and a comb-over that made me look like Neville Chamberlain on a bad day.
But now I was done with IV drips and reduced to taking pills, most notably Revlimid - https://www.goodrx.com/revlimid?drug-name=revlimid - at $13,800 a month (plus a free coupon if you get it at Costco, which I don't - I wonder what the coupon buys: a colour TV? a laptop? 50c off toilet paper?) and a few others that cost a few bucks a month.  Medicare covers me for 80% of the cost, I think, while a number of charitable foundations very generously stump up the rest.  (If you have a few bucks looking for a home, please send them to the Healthwell Foundation or any similar foundation that takes your fancy.  I may well leave them my stamp collection in my will.)  It appears that I am tough as an old boot and suffer few of the side effects of Revlimid and them only mildly.
But, as I said at the start, my bone marrow now shows no myeloma and I am fitter and feel better than I have for years.  I'm making a few bucks tutoring math students who not infrequently say I'm a better teacher than the one at school (I'm also paid twice as much on an hourly basis) and playing occasional gigs with a bluegrass / folksy band.
And, best of all, after all the crap she's had to put up with (especially my failing memory), Susan is still talking to me.

Comments

  1. Hi John. I've been following your blog for quite some time now, and it's really really incredible to see your journey as you battle cancer. I only recently found the courage to finally comment although I knew I could remain anonymous. I just wanted to tell you that your courage to share this story with people who might need it is immeasurable; it is a great gift that you possess in storytelling and synthesizing honest and stark commentary with the occasional humor. Every entry is a delightful read and I feel like I have gotten to know you just through these anecdotes. Just know that there are other readers out there, like me, who are going with you through journey, through the thick and thin, and rooting for you, and enjoying your work. I hope you continue to write and that the good signs from your biopsy spill over to more good news! - A loyal reader

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  2. Wow! I'm truly delighted to hear from you. I've enjoyed writing the blog, even when it wasn't particularly cheerful and it's great to know it has helped someone. It has often been easier to write that I am feeling awful than it has been to tell Susan - the blog gave me the opportunity to be somewhat anonymous.

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  3. Hi John. Just when I thought I'd figured out how to add a comment after all this time, I managed to delete it instead of posting it. So this is my second attempt. You can tell I'm an Arts graduate! So glad you're doing so well. All the best.

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    1. Thanks, Viv. I'm trying to update my blog but blogspot has decided I'm not allowed to. So fret not about being an arts graduate - even us folks who've worked with computers for 50 years have difficulty fathoming Google.

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  4. Finally I can comment! Technology was defeating me. Simply amazing news. Googling all your stuff and procedures helps us understand. Your ever humorous stance on life amuses us. X we love you tons x

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