Moving through life, I often draw on past experiences to guide my actions and decisions in the present. For several years, I supported childbirth as a doula. Early into my cancer treatment, I began noticing similarities between the process of birth and coping with cancer treatment. Both involve finding strategies to manage significant pain.
Let’s get the matter of pharmaceutical remedies out of the way first.
There are very few medications I take for pain relief, and only if there is no other way I can manage. It’s not a bravado move. It is a matter of necessity and experience.
From the myriad of blood tests associated with my diagnosis, we learned that my kidneys were showing signs of distress. The byproducts of myeloma can overtax the kidneys, so supporting this vital organ in every way possible is essential. What else could be impacting my kidneys? I had been taking regular high doses of nonsteroidal anti-inflammatory drugs (NSAIDs) to manage increasing back pain and sciatica. NSAIDs can affect kidney function and lead to kidney damage, especially when there is some other kidney impact happening. We could not stop the cancer yet, but I could and did stop taking NSAIDs immediately.
I rarely take narcotics for a couple of reasons. I am an alcoholic (sober since 1980) and can too easily slip into the clutches of other addictive substances. Further, most narcotics I’ve taken were not particularly effective at relieving my pain. I’d just get saddled with narcotics’ troublesome side effects and have another batch of things to deal with—no gain for the trouble. No, thank you.
Several medications used for pain relief and cancer treatment side-effects impact the central nervous system and can cause difficulties with thinking. I’m highly sensitive to these medications. I steer far and wide from substances that mess with my thinking.
So where was I to go from here?
It's ideal for labor to start gradually and increase steadily during childbirth. The benefit is that every early contraction serves as a practice session for the next contraction. One after another, each contraction builds a foundation of increased strength and confidence.
Each step of my initial cancer treatment process had a cumulative effect. For some reason, I thought I could stay ahead of the steady increase in the number and severity of side effects, particularly pain. I quickly learned I could not simply put it out of my mind. I scrambled to find ways to deal with the pain, and I wanted to do this without drugs if at all possible. I referred to my quest as meditation, not medication.
Nearly a year before receiving my diagnosis, I encountered a new sensation of discomfort that was entirely unfamiliar to me. I learned that this new pain had a name—bone pain. It manifested primarily in my lower back, an area where I had sporadically experienced discomfort over the years, but this was unlike anything before. It presented as a persistent, dull ache, almost surreal. If pain were akin to music, this sensation would be like an endless refrain with a subtle vibrato at an unusually low octave.
During my initial treatment, I became familiar with another expression of bone pain. Well, I think it’s right to call it bone pain. Maybe it doesn’t matter. What mattered was its impact and the opportunity I had to come to new understandings and new ways of managing pain.
Within about 12 hours of each treatment round, when I had a full load of cancer medications on board, it seemed I could feel the inside of my bones, and it was excruciating. The pain was especially noticeable in the long bones of my arms, legs, and spine. This internal experience reminded me of a rainstick—as if my bones were hollow with protruding nubs and ribs that unsettled and agitated the flow of small bits along the bone's length.
A cocktail of three drugs targeted the cancer affecting my plasma. I envisioned Kyprolis, boosted by the steroid Dexamethasone and reinforced by the immunotherapy drug Revlimid, as a potent force disrupting the cancer cells congregating in the marrow of my bones. It felt as if I were experiencing little explosions of cancer cell destruction with the debris being swept along to disposal.
The drugs left me worn out to such an extent that trying to push through the exhaustion was a fool’s game. Barely capable of movement, each attempt triggered a cascade of intense pain coursing through my bones, reminiscent of sharp pebbles moving along the length of a rainstick. Not fun.
When that pain first showed up, it made me a little frantic. There was no stopping it, no getting away from it. But panic was not only useless; it made the pain worse. I paid close attention and identified that the pain ran a course, then it was over much faster than I had imagined, and it did not reoccur until I had to move again. I started counting how many seconds the shuddering pain lasted. It maxed out at about ten seconds. That’s all! I was jubilant. I knew how to do this. I only needed to get my mind in the right place.
Grasping that the pain was a consequence of eliminating cancer cells from my bones, I adopted a strategy. I counted: One-one thousand, two-one thousand, three-one thousand, and so forth until, around ten-one thousand, the pain dissipated. So doable! Counting served as a tool to help me withstand the relatively short duration of pain. My intense focus kept me from succumbing to the instinctual panic of fight or flight, a response that would be logical given the intensity of the pain. Within a day or two, the cascading pain shortened to seven seconds, then further to as brief as two or three seconds. The pain was all but gone by four days or so after onset.
Another strategic maneuver I employed was to become very clever about my movements. Lying quite still meant no perceptible pain, and so I held still. My arms were subject to the pain cycles, so I opted out of reading or writing. At the height of the rainstick pain period, I’d combine needs for movements to have fewer instances necessitating the countdown.
For years, I guided women through intense and fruitful labor pains, with many lasting 90 seconds or more. My pain management was similar in its peculiar way. I chose to embrace the pain as a fruitful part of my healing process, the price I agreed to pay in pursuit of a deep and prolonged remission, and I counted my way through it.
This photo speaks volumes . Your description of the bone pain is easily imagined when you liken it to a rain rattle (stick). Counting down the pain…wow! There is a way through it and it is encouraging to hear that the ten seconds gets reduced after a while and many bouts of pain. I just want to hug you and comfort you. I am so glad that Jackie is there to love you through this “mission of re-mission.” Hang in there dear Rosie. Love you❤️