Manhattan Tales: An Unexpected And Welcome Delay
When my stem cells were harvested and put in the deep freeze in June 2010, my hematologist said the timing for the transplant was not yet critical. As long as my blood counts remained reasonably level, and as long I could tolerate the side effects of Revlimid (lenalidomide) and dexamethasone (Decadron), he felt I could postpone the procedure.
A few weeks after the stem cell harvest, I retired from my job because of dexamethasone-related side effects (see my related Beacon column). I also believed the stem cell procedure would take place fairly soon after the harvest, but it did not happen as quickly as I expected.
My wife and I took full advantage of the delay.
In the summer of 2010, we rented a cottage on a lake in the Adirondack Mountains and enjoyed time with our three children who joined us.
In March 2011, we spent 16 days touring Israel. A few months later, in July, we repeated hikes we had taken in Banff National Park in Alberta, Canada, 40 years earlier, though this time we stayed in hotels instead of tents. (During the trip, I learned that 62-year olds have no business learning new sports. While mountain biking downhill, I flew off the trail head over heels and landed on my sturdy backpack. It apparently protected me from any physical damage other than some scratches.) Late summer days were spent swimming in the ocean at beaches in and around New York City and ponds in nearby Connecticut.
Alas, it appeared that the delay for the stem cell procedure would not last forever. My blood counts were not moving in the right direction.
During the late fall of 2011, my hematologist was becoming more insistent that the time for the transplant was approaching. He also was not amused by my steroid adventures and insomnia. A brief switch from dexamethasone to prednisone seemed to make my state of mind – and my blood counts – worse.
I continued to swim a mile four or five times a week in a pool in Manhattan. I found that cool water (79 degrees) was great therapy, both mentally and physically. The rhythmic breathing during the 45-minute swim was akin to meditating. The water and the exercise were fabulous for my neuropathy, which was getting worse as the chemotherapy continued. For the period of the swims and for several hours afterward, my symptoms substantially abated.
On January 1, 2012 – in New York a day more like spring than mid-winter – my wife suggested we go out to Coney Island to clear my head and give support to our 25-year old son, who was joining the Polar Bear Club with a plunge into the ocean.
I grabbed my backpack (which usually contained a swimsuit), and we took the subway out to Coney Island. By the time we arrived, the air temperature had risen to 60 and thousands of people were on the beach.
Undoubtedly still under the influence of my weekly dexamethasone doses, I joined the hordes. I changed into my bathing suit and plunged into the water.
This was perhaps my last bit of steroid insanity. I unfortunately dove into the water with my eyeglasses on, which I barely managed to grab before the ocean took them away.
Although joining the polar bear club had not been on my “must do” list, it did make a welcome distraction from the myeloma: It relieved me of the neuropathy for a few hours and provided a great conversation topic for a few days.
Nevertheless, all these activities didn’t keep the stem cell procedure at bay.
In February, two years after my initial myeloma diagnosis, the hematologist said it was time to schedule the procedure.
A mere three weeks later – far more quickly than I had anticipated – I was admitted to the 11th floor of Mt. Sinai Hospital in Manhattan.
I was surprised to be quickly shipped down to surgery on a gurney for the implant of a catheter in my neck. The catheter was to serve as a port for the constant stream of fluids and medicines I was about to receive. I don’t think I had been forewarned of what seemed to me to be a pretty dramatic if quick surgical procedure. Perhaps just as well. It went without mishap.
The catheter was immediately put into service: I received my dose of melphalan (Alkeran) and thus was on my way to the loss and rebirth of my bone marrow.
Nineteen days and many gallons of IV fluids through the catheter later, I was discharged. I emerged from my 15-square foot room 12 pounds lighter, a lot weaker, and a lot balder. I also emerged with a profound respect for the nursing profession.
While the procedure did not go without complications or difficulty, a mere four weeks after discharge, I am in a state of semi-euphoria. I am sure this emotional state cannot last, but the pain is abating, my stamina is returning, and I’m thrilled to be on the road to recovery.
In my next column, I’ll post the details of the procedure.
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 .
Well bully for you, now I feel worse, not nice to brag
Thanks, Stephen, for your column. I noticed you didn't write anything last month; I now know why!
I'm sorry to hear that you had to have the stem cell transplant, but I'm glad to hear you made it through it in one piece. Do you think the exercise you've been doing since your diagnosis made it easier for you to make it through the stem cell transplant? I would think so, but I'm curious to hear your thoughts on the subject.
I'm looking forward to your next column.
This is the first time that I have blogged or been on this web site. It was good to read your message Stephen. I am feeling very apprehensive,as I will be addmitted next Tues May 1st and will have Malphalan 2nd and my stem cell transplant May 3rd.Its just all the unknown that I am anxious about. I had my cells harvested April 14th and have been feeling well and almost back to normal.I was even given the OK from my oncologist to go on a planned 3 week cruise to Europe, for our 25th wedding aniversay. I was so worried that I would pick up a bug, but thankgoodness I stayed well. I even did a four hour bike tour of Lisbon,and kept up with our frieds . The thought of having that heavy duty chemo again is daunting,when I feel so well.It sounds like you were pretty sick with Malphalan. I was diagnosed June 2011 and started Velcade November to Feb. That dexamethasone is a wicked drug I agree. I also have some neuropathy in my feet, but thank God i do not need treatment for it. Does the Malphalan cause neuropathy ? Or is it just Velcade. I have always exercised,so of course do not like to be so incopasinated. So good to hear that you are on the road to recovery, I will be interested in your course of recovery,and I will let you know how I manage,when I am able. Take care.
It's a tough road to hoe but well worth the results. Glad you are already feeling better.
Thanks for sharing your story Stephen. I myself went thru the harvest procedure last year and am taking only Revlimid daily as a maintenance drug. Three weeks on, one week off. Currently my M spike is holding steady and I'm not needing a transplant at this time.
What stage were you diagnosed at when you started your chemotherapy? I was at stage 2. I can relate to your harvest story though for myself I became infected with a Acinetobacter bacterial infection and had to spend four days in ICU as a result. Still, much of what you've said here I can relate to. I want to travel more while I can and I'm glad to see that you've been able to do that. Looking forward to your next column.
Stephen,
Your experience is yet another example of how swimming and exercise in general helped with peripheral neuropathy pain. I found swimming to be a lot more effective than morphine or the other anti-depressant drugs I was prescribed. I wished the pain relieving effects of exercise would last longer than they did but I really enjoyed it when I could. I highly recommend trying swimming to anyone having difficulties with PN pain.
I used to do open water swimming here in California before I was diagnosed with MM and hope to start that back up again this year. I wish I had your warmer east coast water. I have some concerns about getting into a bacteria and virus filled ocean while having a “baby” immune system post SCT and low WBC from Revlimid. Have you been back into open water swimming since your SCT? Any problems or did your doctors caution against it? When I checked out of my SCT they gave me written guidance not to go into public pools for a year, but I talked about it with my SCT specialist doctor and he blessed me swimming again immediately which I have been doing. I did not talk about ocean swimming with him though.
Stephen,
Congrats and thanks for sharing your experience. I to went through the exact same treatment and regiments as you at the Methodist Specialty Transplant Hospital in San Antonio, Texas. I had my Autogenous(SP?) stemcell transplant in 08. They put me on Revlimid/Dexo for a year as a maintenance. I have been doing great other than the severe leg and body cramps. I still find my self with no energy but other than that I am doing great. Pain just means Im alive. Keep the faith my friend and continue posting. Its nice and gives me hope to hear such postive things. God Bless You.
hi Stephen...nice to read your column and hear of your medical progress and also your travels. Hope that the good euphoric feelings continue into a really good recovery from all of this illness and treatments! When you mentioned how you went flying off the mountain bike and landed on your backpack, it reminded me of a fall like that a few years ago. We were hiking on a very icy trail in Banff Park, to see a frozen waterfall. Ice climbers like to use that area and we wanted to see it in winter. I slipped on the ice and went right down, landing flat on my back , which was protected by the back pack! Seems like active people do have mishaps sometimes!
Thank you for all of your comments and good wishes -- and Diana good luck with your own Stem Cell Transplant. As they say, it's no picnic but "this too will pass." It's been eight weeks since I received my stem cells ("day zero" as that day was termed in the hospital) and a little over five weeks since discharge. I really am forgetting the worst days. In addition I am gingerly returning to exercise but anticipate a somewhat lengthy recovery.
Terry -- you asked whether exercise has a therapeutic effect against cancer? I've never seen it reported, but it certainly has helped me with the pain and in facing up to challenges of this disease. Swimming in particular I regard as my own form of meditation -- deep breathing, rhythmic, and free of distractions. Yesterday was my first swim in the pool since the transplant and while it was a very slow swim and very short in comparison to where I was a few months ago, it was delicious!
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