Monday, May 8, 2017

Putting on My Socks One at a Time

The other day I got out of bed and starting putting on my socks.

While that's a rather mundane morning operation, I paused to reflect on how that wasn't so only 15 months ago…

Though there is a tendency for the things we commit to routine to drop below the radar of our consciousness, they can suddenly pop out in sharp relief when that routine is suspended.

After a long life of mostly robust health (it didn't hurt living a homestead lifestyle on an organic farm for 40 years, eating the food we grew), I developed a persistent back pain starting in the fall of 2014, when I used poor technique loading the back of a pickup with heavy boxes in the rain. From that point forward, my routine was interrupted, and I went through long stretches of bed rest in an effort to recover. (I recall being in too much pain to carve the turkey at Thanksgiving; I just wanted to be horizontal, and there is nothing routine about my skipping Thanksgiving dinner.)

While I didn't split much wood in the winter of 2014-15, I was mostly able to manage the pain with OTC doses of ibuprofen, and things gradually got better. I returned to work (traveling across the country) and resumed my busy life as a community networker and process consultant. But I wasn't really better. My back still hurt and I had to be increasingly careful how much weight I put in my suitcase. For the first time in my life I started being picky about where I slept. If the bed was too low (like a futon on the floor) it was an ordeal getting up and I was susceptible to muscle clenching in my lower back whenever I needed to get up in the night to pee. No fun!

Finally my body broke down again. I was visiting my son, Ceilee, and my grandkids (Taivyn and Connor) in Los Angeles in December 2015 when my back clenched up again and I was bed ridden for a couple days. I recovered sufficiently from that to travel (by bus, no less) to Las Vegas and see my daughter, Jo and son-in-law, Peter, for a few days over Christmas. Though still in pain, I was semi-ambulatory and managed to take a red eye to Minnesota to be with my new partner, Susan, in Duluth for a week straddling New Year's.

I can still recall how excruciating it was walking to the gate in McCarran around midnight, and then repeating the process fours later when I landed at dawn in Minneapolis. I felt like shit. By the time I arrived in Duluth (via a shuttle van), I was a wreck. Susan put me to bed (it was all I could do to climb the stairs) and once she tucked me in I barely left it.

After five weeks of feeding me in bed Susan decided enough was enough (duh), and took me to the ER at St Luke's Hospital. Not having ever been seriously sick before I didn't have a frame of reference to understand how stupid I was, trying to heal myself with bed rest and ibuprofen. Although I knew that pain is Nature's way of telling you that something's wrong, I essentially had the ringer off and the messages kept going to voice mail—which I then erased without checking.

As you can imagine, my daily routine started breaking down in Los Angeles when my back pain returned with a vengeance. From that point on, it was an exceptional day when I was feeling frisky enough for a shower. By the time I got to Duluth and Susan poured me into bed it was uncomfortable to even lie on my side.

I recall waiting to be seen at St Luke's Emergency Room and hardly being able to tolerate the pain of sitting up—my back hurt that much. Finally, I got into a bed and the doctors started looking me over. From there, things went fast. They gave me oxycontin for my pain and it disappeared! Of course, it was being masked, not cured, but I was grateful nonetheless. After a few hours of blood work they determined that I had enough problems to admit me to the hospital:

•  Multiple myeloma—a cancer of the blood where the bone marrow produces an over-abundance of unhelpful plasma cells instead of the red and white corpuscles called for in the instructions.

•  Kidneys that were near failure, operating at only 20% capacity because of the strain they were under attempting to dispose of all the unwanted plasma cells.

•  Skeleton thinning. A common byproduct of my cancer is calcium leaching and the doctors were quite concerned that I might break something.

•  Three collapsed vertebrae (probably related to the skeletal thinning), which coincided with the epicenter of my back pain. While my spinal cord was not at risk (there was no imminent threat of paralysis), I will never build another cistern or fell another tree.

Well, no wonder I wasn't feeling so good! I spent the next 19 days in the hospital, during which they worked diligently to support and strengthen my kidneys, to contain and drive back the cancer, and to manage my pain. While all of this was accomplished (hurray!), I was in an opioid fog. I think there was a point where I was getting as much as 60 mg of oxycontin twice a day and I was pretty weak and loopy.

To be clear, I'm not criticizing my doctor's choices in how they medicated me (I don't know enough to have an opinion about that); I'm only reporting that I don't remember much. I was (I discovered later) pretty close to death, and by the time I got out of the hospital I had lost a lot of weight and muscle tone. It was an ordeal just getting out of bed to pee.

While Susan tried taking care of me at home when I got discharged from the hospital (Feb 19), that proved too much. I was still fuzzy brained, and weak as a kitten. Fortunately, we got sage counsel from a home healthcare nurse, and my medical insurance was robust enough to pony up for a stay in an assisted care facility. Thus I moved into Ecumen Lakeshore Feb 26-March 19, for short-stay rehabilitation, which turned out to be exactly what I needed.
In particular, it was at Ecumen that I started reclaiming control of my life. When I was at St Luke's I just fell into the back seat and let them take the wheel; now it was time to climb back into the driver's seat.

Riding the Opioid Tiger
There have been two tracks in particular that I want to shine the light on. The first has been my journey with opioids—which is all the more interesting in that there are rising concerns these days about opioid abuse, and even some emerging evidence that they may not be as helpful in pain management as once thought.

After a certain amount of chaos in my early days at St Luke's, my doctors dialed back my oxycontin intake to two 30 mg pills daily—a level at which I had no trouble tolerating the pain. Yet it wasn't until my stay at Ecumen that I started getting serious traction on regaining my cognitive ability—a process that mostly proceeded subconsciously.

I started doing the NYT daily crossword again with Susan, I read more, and slowly the fog lifted. (I am in total awe of what the human brain can acclimate to.) I'm still scratching my head about how my brain—which was completely woozled by oxycontin at the outset—figured out how to benefit from the pain suppression and at the same time make steady progress in recovering cognitive function. Wow!


When I was at the Mayo Clinic in the summer, the doctor overseeing my care there (Frances Buadi) decided to cut my oxycontin back to 20 mg twice a day, and I had no trouble with the lower dosage. Already then! I was at that level for six months and then my Duluth oncologist (Humam Alkaied) halved the dosage to 10 mg twice daily. I still did fine.

It's been an interesting dance. On the one hand, I want to be totally off opioids (I'm concerned about the possibility of addiction); on the other, I like not being in pain. This month, with Alaied's encouragement, I've been experimenting with going off oxycontin all together. Instead, I've been given a PRN (use as needed) prescription for 5 mg tablets of oxycodone (which is just as potent as oxycontin, but quicker acting) with the idea that I can use them if the pain gets to be too much. Kind of a safety net. Since taking my last oxycontin April 25 (13 days ago) I've only taken oxycodone four times, the last pill five days ago.

Because I don't want pain to compromise my ability as a professional facilitator and teacher (and I know that oxycodone doesn't interfere with my cognitive ability) I'm traveling with a supply of oxycodone tablets. But maybe I'm done. I still have back pain, but I've adapted to it and it no longer gets in the way. If I can manage all that without opioids—which is what appears to be happening without any horrendous withdrawal symptoms—hallelujah!

Reclaiming My Routines
My second track toward recovery has been reestablishing my routines. It's been a matter of starting simple and working up from there:

At Ecumen this translated to:
—Using a walker instead of a wheelchair
—Strengthening my legs on a stationary bicycle
—Getting out of bed each morning and dressing myself before Susan visited with coffee and the Minneapolis StarTribune

It turned out that the trickiest part of getting dressed was putting on my socks—something I'd more or less taken for granted since I was three. Bending over meant stretching my tender back and moving muscles that had gotten lazy. It was humbling, but gradually it got easier.


A month later, I had graduated from Ecumen and was (gratefully) back home with Susan. Then my goals ramped up a bit:

—Get up every day, and work in a chair (rather than bed)
—Manage my own pill regimen
—Stop using the walker to get around
—Make the coffee
—Put away the dishes
After my stem cell transplant last summer, we bumped it up again:

—Cook breakfast M-F (the days when Susan goes to work)
—Start driving myself to the hospital for infusion therapy, and to the store for groceries
—Be the backup dog walker
—Take turns cooking dinner

This summer I may even do a spot of gardening and canning. Susan has wisely encouraged me to make steady progress in reclaiming my routine, and it's definitely helped with my morale. If you start acting like a normal person, before you know it you start being one. Today I put on my socks one at a time—just like a normal person—and smile.

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