Manhattan Tales: Breaking Through The Pain

Last year, I emerged from a three-week hospital stay for a stem cell transplant in late March. On the drive home, I almost wept with happiness looking at the flowering cherry trees, forsythia bushes, and tulips. Compared with the subdued hues of my hospital room, the colors were so glorious and bright. Spring had come early, and March had been one of the warmest on record.
This year, it has been cool here in the northeast, and spring has been late and extended. The cherry trees are not even in full bloom, and we are already in the last week of April. But spring is definitely here, notwithstanding the 40 and 50 degree temperatures.
I have been paying close attention to spring’s arrival because now that I am on Pomalyst (pomalidomide), I have been traveling at least once weekly to the hospital for a variety of tests and consults.
The hospital is located adjacent to one of the most beautiful corners of Central Park in Manhattan, the northeast quadrant. This corner of the park, which used to be very dangerous, has been completely redesigned and replanted. It contains an 11-acre lake (Harlem Meer) and a conservatory garden.
The park and garden actually make me look forward to my 20-minute subway ride and 25-minute walk to the hospital – the park becomes the main goal, the visits to the doctors and nurses the incidental.
Last week, the pink “saucer magnolias” came out and were psychedelic pink in their splendor. Two weeks ago, my wife and I espied a back-crowned night heron perched on a tree; now we see tree swallows and spring warblers (though we haven’t learned to distinguish the warblers from one another).
The gardens and park are great sweeteners for me in these days that are all too defined by my three-year myeloma battle.
The last few months were dominated by lot of pain and a lot of medicines – I was on the neuropathy medicine Neurontin (gabapentin) in such high doses that I felt as if there were a glass wall between me and the world. My hands were so numb I couldn’t type, and I was constantly dropping things onto to the floor. I am now trying to phase off Neurontin and switch to Lyrica (pregabalin). Time will tell if it is a better match up for me.
My life has been much too much defined by drugs lately. I mixed up my medicine doses one week and ended up fainting in a restaurant. My pulse and blood pressure had dropped precipitously (and a fine meal was spoiled). I had to be rushed to the hospital, and my family (and the EMT’s) were highly distressed.
It took a couple of days to figure out what was wrong. It turned out that in a dex-infused state, I had included a medicine in my pill box for a week that I should have disposed of a year ago. All excess pills are now being promptly returned to the pharmacy!
Other than my nature walks, the best and most helpful therapeutic solution I have found for my pain has been a return to swimming. Somehow, no matter how bad the neuropathy might be, by forcing myself out of my chair and over to the gym, the pain abates almost immediately when I get into the water and start to swim.
I was able to return to swimming about a month ago, when the symptoms of my two winter pneumonias had disappeared. I had little stamina and little speed at first, but over the course of the last five weeks much of the stamina (if not the speed) has returned.
Swimming allows me to “break through” the pain barrier. Not only does the neuropathy almost entirely disappear for the 30 to 40 minutes that I am in the water, but it is substantially under control for many hours afterwards. My mood improves as well for an even longer period than the neuropathy abatement.
I don’t know the biochemical or psychological reasons that exercise works in this way for me. But in addition to the exertion and the distraction that the exercise provides, there is something more. The rhythmic motions and the rhythmic sounds that my body makes as it strokes through the water, are soothing and relaxing. I don’t meditate (as I understand that word), but the rhythmic effort puts me in some sort of non-physical zone that enables me to completely put my physical troubles aside.
Taking the edge off is particularly important for me now that I am back on dexamethasone (Decadron). As described in one of my earlier columns, I repeatedly got into confrontations with people when I first started taking dex three years ago.
However, I have decided that I don’t want any of this aggressive nonsense in my life anymore! When in crowded areas now, I sometimes don (without much need for help) the persona of an elderly, unsteady person. It seems to work; I usually am given a seat on the subway (though I usually wait for an uncrowded train).
And I am 100 percent off of caffeine; I find that the caffeine and dexamethasone combination is too much for my emotional state to handle.
On days that I do not swim, I often go to the gym and use resistance machines with very light weight settings, less than half the amount of weights that I used in the years before my myeloma diagnosis.
The resistance training is not as satisfying as the swimming, but it also has a great therapeutic effect on the neuropathy and my state of mind. And (I think) I am building up a small muscle layer to help cushion me when I inevitably will fall, for there are some days when I have been pretty unsteady on my numbed neuropathic feet.
But forcing myself out of my reading chair at home and into the healthy world outside, be it the park, the pool, or the weight room at the gym, are my means of removing myself from what, at times, seems the all-consuming nature of this illness.
Breaking through that pain barrier is possible. The medicines provide some relief, but they are not the complete answer.
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
What was your Gabapentin dosage - i am on 1800 per day (600 three times a day) - makes me a little tired. I tried lyirica and had a major hive/rash reaction.
Hi Stephen, Thanks for the update on your treatments. Sounds like the cool water is best for your neuropathy, and swimming is such good exercise too! Lovely descriptions of Central Park...really inspiring! Take good care of yourself!
Hi Stephen, good luck with everything. For the dex., a low dose Xanax pill (alprazolam) worked wonders in terms of allowing me to sleep well. It also completely prevented any of the bad dex. side effects (Jekyll and Hyde). I don't know why it is not routinely prescribed when one is on dex. It works.
great article i also get relief in pool as well as hot tub and weight training
cymbalta is drug for me helping with neuropathy in legs.try using Gaiam roller board on legs as well as
stretching works for me
Stephen,
Much of what you have said and experienced with exercise, I can relate with. I use biking in much the same way you use swimming. The effects are similar. The exercise clears the mind and the focus is off of the disease during that period and for some time afterwords. I also believe it helpis both physically and mentally in combatting the disease and the side effects of treatment.
Thanks for a great article.
Ron
Hi Steve, I just read your piece.My husband had a sct 1 year ago this month.So far so good. He is on Revlimid maint. They recommend decatron with it too. After taking 40 mg 4 days a week for 4 cycles before the transplant, we ( my husband and I ) felt that it would be unwise for him to do that. His oncologist agreed too He had mood swings and outbursts ,like you mentioned. He had EXTREME fatigue caused by the Rev. His oncologist prescribed Rittilan. ( yes the adhd med) After playing around with the dosage ,Mike has ended up taking 20mg extended release. It has worked wonders for his energy levels.As for the neuropathy,I make sure that he takes a B6 supplement daily.It seems to help quite a bit. So far so good.He is coming up to his 1 year :birthday" on May 18 is still is in remission. I wish you all the best Karen
Hi Steve good luck with the new drug , thought I'D let you know I was being treated with Thalidomide in _2004_for a period of 10 MO. - it did leave me with a mild case of Peripheral Neuropathy which has diminished over time to the point that now days it's just a brief occasional shooting pain in my feet. N.G.
Hi Nipon,
Stephen is correct when he wrote in his latest column that thalidomide was approved by the FDA as a treatment for myeloma in 2006. However, it was possible prior to 2006 to prescribe thalidomide "off-label" as a treatment for myeloma, and there was, in fact, a substantial amount of prescribing of the drug for that purpose.
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