Many folks enjoy this story, either because they’re glad it didn’t happen to them or that they know someone has gone through it and survived.
My story begins with a classic mis-diagnosis and continues with a focus more on the damage caused by Multiple Myeloma (MM), than the disease itself. (Most other patients will say “wow! you’ve had it worse than I”!)
It was early in the year 2011, when the first diagnosis on a nagging band of pain running from the mid-chest, around under my left arm, was “you need more exercise”. After many days of increasing pain and sampling many varieties of pain meds, waiting for the mysterious problem to disappear, it was the numbing in the feet and finally, loss of control of my legs, that brought more intense focus on my complaint. In the interim, a chiropractor assigned me to a massage therapist that pounded me pretty well which, as it turned out, could have done serious damage.
A sharp orthopaedic surgeon quickly found the cause – a compressed spinal cord, caused by a cluster of tumors that had dissolved bone at T7 and T8. And on May 6th, I was rushed into surgery for an attempt to restore function to the cord before permanent atrophy set in.
The concerns for the outcome were (1) would I survive the procedure? (2) Would I gain full mental acuity afterward? (3) Would the spinal cord be saved? (4) Would the fusion allow full mobility to return? (5) Would the MM continue to cause havoc?
After 12 hours in the OR over two days, the procedure was wildly successful (my surgeon still beams when he views my x-rays.) The tumors, which looked like a cluster of Concord grapes, were removed and the spine was repaired by inserting a spacer in a gap and fusing the area with a 2″ by 10″ strip of titanium, secured by eight titanium screws, neatly spaced as if a machine had done it.
However, I didn’t just walk out of the hospital with a smile, it was just the opposite – I was at the lowest point of my life, with nowhere to go but up. The compression had caused the brain to lose all contact with the network of nerves and muscles, from my chest to the tip of my toes. I was a paraplegic, albeit a temporary one – very weak, hallucinating from the anesthesia and unable to even sit up in bed, because I had no sense of balance. Many blood transfusions were needed over the coming months to cope with raging anemia. When I regained my mind, I was determined to “get my legs back” and, oh yes, my digestive system.
My burden felt even heavier after I learned the cost of Revlimid, which can cause one to consider the value of their life, in currency.
What followed was weeks and months of dealing with frightening, fatiguing and painful physical therapy and the other inconveniences associated with hospital life.
This was not a restful time. I had to fight for myself. It was hard work to keep myself in a condition where I could withstand therapy. Therapists would try to work me out when I was already exhausted. Others would waste my energy with unnecessary therapies – speech, cognitive, etc. It was a job coordinating my bathroom needs – plastic bottles, bedpans and staying relatively sanitary. I had to monitor the medications served up – the nurses didn’t always get them right.
The first exhilarating achievement was when I was transferred to a wheelchair and could leave the room and navigate around the hospital on my own.
In late August I was released, much improved, but still bound to the wheelchair, with yet a long way to go. At home, doing a variety of exercises on my own, I graduated to a walker, then to a cane and finally to venturing out with no physical support whatsoever.
Today, any lingering mobility problems are very minor – I can get around nearly as well as ever. I can now amuse myself just by watching me move around. And my enjoyment of resuming my normal life knows no bounds.
The Myeloma? Oh yes, I almost forgot! It has cowered in the background – subdued, like a scolded dog. My regimen of Revlimid and Medrol has kept it in check, while Zometa, Prolia and mineral supplements forestall further damage. Then there’s yogurt for the quirky digestive system, is much improved also, but still a challenge at times.
The cost of Revlimid? CelGene generously supplied it gratis till 2012, then introduced me to the Chronic Disease Fund and the Leukemia and Lymphoma Society, which have absorbed the co-pay expense to date.
How did I get through it all? World-class support from family and friends and the hundreds of medical professionals working on my behalf. My daughter Tracy served as my forward reconnaissance and trouble-shooter and wife Jo has been my Red Cross. Then there’s the Westlake Village, California, MM support group to lean on. They’re always ready with a hug and to lend an ear.
How about me personally? Many years ago, I had prepared for aging by coming to a comfortable understanding of the mysteries of life and death, and dealing with adversity. So from the get-go I was fairly certain how to act. There were only two short periods of despair, that I can recall. But many spells of wonder and curiosity.
My future plan is to carry on with all means of therapy, hoping to sooner or later advance to that sublime state known as remission. My numbers are harvested and analyzed by my oncologist, Dr. Michael Masterson of Thousand Oaks, CA, and occasionally, by consultant Dr. James Berenson of Los Angeles.
Yes, the odds are that my future with MM may not be as smooth as after the “grapes” were removed. But am certain I’ll deal with it well enough – somehow.
— Tom W.