Wednesday, March 29, 2017

Health Update #1

As many of you know, I was diagnosed with multiple myeloma (a cancer of the bone marrow) 14 months ago. As I was in pretty bad shape when it was discovered (I had been bed-ridden with excruciating back pain for six weeks before it got bad enough for me to go to the ER seeking relief—looking back, it's obvious that I waited too long, but I'd never been seriously sick before and I'm a stoic guy) it was touch and go for awhile. 

My kidneys were barely functioning at 20 percent of capacity, my skeleton was brittle from calcium leaching, and I had chronic back pain from three collapsed vertebrae. I was a mess. While they wanted to treat my cancer the doctors' immediate issue was saving my kidneys. To better cope with it all, they immediately put me on oxycontin to relieve the pain. Whew!

Today I am doing much better. My kidneys are functioning at near-normal capacity (I barely dodged the bullet of needing dialysis or a kidney transplant), the cancer markers diminished in response to a cocktail of chemotherapy, I underwent a successful autologous stem cell transplant at Mayo Clinic in July, and I've been steadily regaining stamina, appetite, energy, and cognitive function ever since. Best of all, my cancer is in complete remission.

To be clear, my cancer is not defeated; it's dormant. Because the version of multiple myeloma that I have is particularly aggressive—that is, it can ramp up quickly—my oncologist likes to see me once every four weeks and I get a maintenance dose, via intravenous infusion, of Kyprolis (a chemo choice especially developed to combat my cancer and one which I've shown a good tolerance for) on back-to-back days once every fortnight (adjusted for road trips). By checking my blood every two weeks they keep a weather eye on my cancer markers. So far so good.

I'm writing to give everyone a more specific monthly health update. 

1. Four-week Road Trip
One of the blessings of my recovery is that I am strong enough and clear-headed enough to be able to return to my work as a process consultant and teacher. Yippee! I love the work and it's my social change passion (the way I try to make a positive difference in the world). While the work calls for high concentration as well as mental and emotional stamina; it does not particularly call for physical endurance. 

I took baby steps at first, starting last September. Not sure how much I could do and justify my fees I didn't do more than two things back-to-back. As things went well, I have gradually attempted more and more, leading up to a very ambitious road trip: I was on the trail from Feb 23-March 23, during which I worked five jobs and was busy every weekend. 

It was incredibly gratifying to return home road-weary, but not exhausted, and to experience being able to deliver some of my best work on the final weekend of the trip. I was fully back!

While I don't like being away from Susan for that long (and therefore will try to keep future trips to a maximum of three weeks) it was good to know I could do it. And that I can keep plying my craft for the foreseeable future, which is good both for my soul and my pocketbook.

2. Normal Hemoglobin
When I saw Dr Alkaied (my oncologist) yesterday he was looking at the blood tests from Feb 21 (the last time I was in town) and noted with a smile that my hemoglobin was 13.8, which is normal for an adult male. It was the first time I had reached that level in his year of working with me. He quipped, "If you keep this up you'll have to get a new doctor; in my line of work I don't see normal people."

3. Tapering off on Zometa
Once my kidneys started functioning better (late last spring) my doctor started giving me monthly doses of Zometa, a drug designed to recalcify my skeleton. Though I haven't broken anything throughout this adventure (knock on wood), when Alkaied first saw me (in Feb 2016) he wasn't optimistic about my walking again—the leaching of my bones was that bad. Not knowing that I shouldn't, I worked on regaining my strength to the point where I no longer needed a wheelchair and I've been walking for a year now.

In looking over my progress yesterday, Alkaied decided that they could back off on the Zometa to once every three months, as my need was diminishing. Hooray! As I sometimes have a temporary adverse reaction to Zometa (one time it was a severe headache; other times it's been weakness and a loss of appetite) I was happy to hear that.

4. Weaning off of Drugs
After several months of encouraging results, Alkaied announced last month that I could cease taking daily doses of Allipurinol (to protect against gout and kidney stones) and Ranitidine (to protect against heartburn and stomach ulcers), and could switch to OTC vitamin D supplements. Fewer pills and less expenses! But what about pain relief?

I expect to have back pain the rest of my life (centered around the three collapsed vertebrae in the middle of my back). For more than a year now I've been taking oxycontin (an opioid) twice a day, which has done a miraculous job of relieving my pain. Oxycontin is slow acting and lasts for a 12-hour period, hence the twice-a-day regimen. As back-up, I have a supply of Robaxin (a muscle relaxant) and Oxycodone (a fast acting opioid, and a cousin to oxycontin). Because oxycontin has been so efficacious and I have a relatively high pain level, I have rarely used either of my back-ups. Also, I'm leery of opioid addiction (I am not looking for ways to bond with Rush Limbaugh).

So I had a mixed reaction when Alkaied suggested pulling me off of oxycontin last month. On the one hand, I liked the idea of being off of pain medication. On the other, I didn't want to be in pain a lot. In talking it through with me he decided to wait a month, rather than risk my struggling with the switch while on a four-week trip. That made sense to me. 

I ran out of my supply of oxycontin last Sunday, with my appointment with Alkaied set up for Tuesday. Monday night, my first after going all day without pain medication, I had quite a lot of trouble sleeping. Although my back pain was tolerable, it was cumulatively tiring and I lay in bed tossing and turning for six hours before I took two Robaxin and was able to get some sleep the final three hours in bed.

Naturally, I shared that data point with Alkaied the next day. After discussing it with me he decided to try an intermediate step on the road to getting me off opioids all together. For the next month he's given me a prescription for oxycontin in a 10 mg dosage (down from the 20 mg pills I had been on since August). As I won't pick up the new pills until this afternoon (opioids are a controlled substance and there are strict protocols about getting prescriptions filled), I went through another night of tossing and turning until 3 am last night, Ugh. At 4:30 Susan helped me find my supply of oxycodone (in my sleep deprived state I had trouble locating where I'd placed something I had not used in 12 months) and I blissfully enjoyed the last two hours of the night.

It's amazing how much of your bandwidth can be consumed by pain management. Tonight I'll be back on oxycontin (albeit at a lower dose). Hopefully this is just a small blip in an otherwise rosy report.


Leckey Harrison said...

Having just learned of you by your article in Communities #106 (What do you mean 'community?"), I want to wish you well.

I live in an intentional community ( in Langley, WA, and the article I haven't finished yet has already been confirming as well as instructive. Concensus seems to be the underlying trick, and I recall Scott Peck wrote a book about community that mentioned it. I would like to see us achieve that capability.

Thank you for the article!

Leckey Harrison

vera said...

An amazing story, and wonderful recovery. Best wishes! :-)

rithkhmer said...

thank for good post and sharing.......