Manhattan Tales: Intermission

This past spring, much of the northeastern United States had an unusual hot spell. In New York City, the spring trees and shrubs burst into bloom in March, a month ahead of time. I spent most of that month in the hospital undergoing a stem cell transplant, isolated from the extraordinary weather.
The first few days in the hospital, I had a glimmer of Central Park through the hallway windows. From my eleventh floor perch, I looked longingly at the joggers and bike riders exercising near the reservoir. But I was soon confined to my room and became far too weak to walk the halls, even if the nurses had permitted it.
A few trees and the forsythias were still in bloom in late March when I took the six-mile trip home. The brilliance and the colors of the late cherries and forsythias were dazzling to me. Three weeks of sensory deprivation in a pale hospital room heightened my delight in nature’s handiwork. I was weak but thrilled to have emerged from my confined quarters into spring.
With a great deal of encouragement from my wife, we started short walks around the neighborhood within a few days of my return home. My walks grew steadily longer, and within a couple of months, I could – with generous breaks – walk the three miles to the Battery and back. Notwithstanding an occasional wave of exhaustion, my stamina slowly started to return.
By mid June, my trips to the hospital reverted to their pre-transplant schedule: once a month for blood tests and a meeting with the hematologist a few days later to discuss the results.
Since the results of the blood tests were not good enough to be called “remission,” my current state is perhaps better categorized as “intermission.” Some sort of chemotherapy is on the horizon, but the hematologist hopes to keep it at bay for a few months more.
So what does a myeloma patient do during intermission? I retired two years ago, six months after I was diagnosed. (Between the myeloma, the steroids, and the neuropathy, I could handle only so much stress.) My main hobby of bicycle riding had to end because my hands no longer have any strength.
To avoid obsessing on my medical state, I started a three-pronged program of distractions.
First, I decided to work seriously on building back my stamina. In May, two months after the transplant, I returned to swimming. I try to go four times a week. Though my speed through the water was (and remains) pretty slow, I do my laps and occasionally swim as much as a mile. I’m somewhat amused by the swimmers in the next lane who, using only a kickboard, swim faster than I do. But, then, I’m not racing anyone! The swimming is a great distraction and always puts me in a good mood. Perhaps it is the endorphins, perhaps it is the sense of accomplishment. And it seems to temporarily ameliorate my constant companion, the neuropathy.
Second, we continued into what I hope was a last set of home improvements for a very long while. Several ancient steam radiators were replaced. New air conditioners were installed. With the help of some neighborhood teenagers and one of my children and his friends, we prepared the apartment for a complete paint job. Every closet was emptied. Drinking glasses and plates were wrapped and boxed. The pantry was emptied, and stale spices were thrown out. I thinned our books and accumulated knick-knacks. Those that remained were also boxed up. Every painting and family photo came off the wall and was bubble wrapped. Unread magazines were recycled.
After the painting was completed, the house of course had to be reassembled. We still have a way to go. For example, both my wife and I have yet to go through several boxes of old papers. But organizing and thinning down possessions gave me a big sense of accomplishment. Perhaps we will throw a party when it is done!
Third, the hematologist said we could plan a vacation. A return to chemotherapy could wait at least until the fall. Lord knows my wife needed a change of scene. I won’t go into the details of how she reacted to the stress of my hospitalization, but it’s worth remembering that emotionally, cancer can be as hard on one’s loved ones as on the patients.
Friends were going to Oslo, Norway, so Scandinavia we decided it would be. An August vacation would neatly coincide with my 65th birthday. It could also satisfy my wife’s lifelong desire to go to Iceland to see the volcanoes and glaciers. The tickets were purchased, and the die was cast.
Timing my prescriptions so that I could carry several weeks’ supply of medicines was a bit of an art, but a switch to Medicare and new insurers proved to be helpful. I carefully meted them out in my plastic color-coded containers and stowed them and my other medicines in my carry-on luggage, unwilling to chance these valuables in a misdirected bag. I decided to abandon a new medicine for neuropathy – it worked, but the gastroenterological side effects were too much to cope with while traveling.
I was a bit wary of not having a doctor or nurse practitioner at hand to discuss my latest twinge or pain, but I threw caution to the wind.
Traveling thoroughly distracted me from the myeloma, perhaps even more than the swimming had. I felt extraordinarily lucky to be traveling a mere six months after the transplant, when I was barely able to walk a single block without taking a rest.
There were several great assists that helped on this trip.
First, in Scandinavia, they have never heard of decaffeinated coffee. Large quantities of caffeine did a fine job keeping my usual bouts of fatigue at bay.
Second, the Norwegians and Icelanders have imported both the word and the concept of “Danish” pastry into their language and their cuisine. Though incredibly expensive by American standards, the pastries are well worth the expense. The butter and sugar also seemed to keep my physical troubles at a distance.
Third, of course the scenery in that part of the world is truly awesome. A fjord, a waterfall spilling off a mountain, or a glacier seem to come upon you at every turn.
Finally, the 40 and 50-degree weather in Norway and Iceland in the last weeks of August was a real treat after numerous 90 and 100-degree days at home. It was also a wonderful remedy for that burning sensation in my skin.
While I’m not certain whether it was the cool climate or the emotional response to the beauty of the place, my neuropathy seemed to substantially abate.
We arrived home on the last day of August, tired but invigorated. My former routine, of course, reasserted itself. I hurried off the day after we returned to have my blood tests, and the next week to see the doctor and to have an MRI. All seems to be stable.
It was fantastic to have almost all of my medical entanglements on hold for a while. When you have great days like the ones we had, the bad luck of having myeloma seems outweighed by the glory of what is beyond the daily horizon.
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for the nice article about your life since the hospitalization for the ASCT. Sounds like you are making good use of your time! Best wishes to you both!
Hello Stephen, I can tell by your story that you have a good attitude about your myeloma and the treatments. Keep it up. Don't let the cancer win!! And the exercising that you do is very important, not only physically but also mentally. I say this because it has done wonders for me after ASCT. Keep up the work and good attitude. Best Regards...
Hehe... we did Europe this spring. 8 months after my ASCT. it was quite healing for me/us as well.
Glad you are managing, particularly your emotional side. You seem very positive!
Stephen, I am glad to hear you are swimming so soon after the transplant; I've been curious how long I'll have to wait to swim laps again. I'm scheduled for transplant at the end of November at Mayo Clinic in Arizona and currently swim 3 or 4 days a week now. It is one of the best parts of my week and helps with the back pain and mental health. I don't swim fast but 45 - 50 minutes is pure heaven. I live in Scottsdale so get to swim outdoors.
I enjoy your column and your positive comments. Thanks for sharing it helps those of us a bit behind you in the journey.
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