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Myeloma Lessons: Happy Anniversary … To Me!
By: Andrew Gordon; Published: February 9, 2015 @ 10:19 am | Comments Disabled
On January 28, 2014, I was sitting comfortably in a chair in my hospital room reading on a laptop. It was about 30 minutes after noon when the door opened and the “team” entered. And quite a team it was.
Six team members - nurses, technicians, and a physician’s assistant - wheeled in a cart loaded with a cooler, a tub with heated water and various tubes, syringes, and other equipment, including a dish of mints. Despite the assault on my senses this procession produced, I was relatively calm.
The day before, I had received my small bag of melphalan [1] (Alkeran). The unassuming-looking liquid was designed to kill the myeloma cells remaining in my marrow following six cycles of induction treatment.
The melphalan infusion had been uneventful. The only real issue had been how cold I was from chewing ice for a half hour before and an hour and a half after the infusion. I am warm all the time, but that ice made me so cold that they had to wrap me in warm blankets. But, all in all, the day after I was feeling pretty good.
Getting my stem cells back was fairly straightforward, if somewhat time-consuming. Each frozen bag was placed in the warm bath to be thawed, and then its contents were very slowly infused through my central line. All the while, I was sucking on mints to ward off the bad taste that many experience from the preservatives used to keep the stem cells healthy.
This process was repeated three times, and I was closely monitored by the team during the entire drill.
When the infusions were finished, all was well, and I felt pretty much how I felt before they started. No pain, nausea, or other complaints. I was, however, started on various anti-nausea medications, which would continue for several weeks as I recovered from the transplant.
I won’t go into detail regarding what I went through over the next four weeks. It wasn’t fun, but certainly I did not suffer any serious side effects. Fatigue and some GI tract pain were my main complaints. I was released from the hospital the day after the transplant and had to return every day for about two and a half weeks to have my blood and vitals checked. I only needed one bag of platelets. So I got off relatively easily.
The year since my transplant has been interesting and, for the most part, quite a bit better than the nine months before. Once I had recovered enough to go back into the world, my physical condition improved rapidly. I was working, going to the gym, and – once it warmed up a bit – out on my bike again.
My numbers continued to look good, so I went on a maintenance regimen of Revlimid [2] (lenalidomide) and hoped for the best. I was almost a little let down.
That might seem a bit odd. But, ever since the initial onset of symptoms in May of 2013 – followed by the diagnosis at the end of June, induction therapy, a second opinion on whether to have a transplant, and then the transplant itself – I was in a constant state of researching, planning, and decision making. Now, it was like I had nothing to do other than to take the Revlimid and hope I didn’t relapse.
As I discussed at length in an earlier column [3], five months post-transplant my M-spike began to rise. This set me off on a search for what might be happening and ultimately led to the conclusion that I likely had secondary monoclonal gammopathy of undetermined significance (MGUS), also sometimes referred to as atypical serum immunofixation patterns (ASIP). If this conclusion is correct, it is a good thing, since this condition is often a positive prognostic indicator.
So here I am. One year after the transplant, and what have I learned?
I have learned that there are two significant, distinct aspects of having and fighting myeloma.
The first part is specific to this particular disease. Multiple myeloma is confoundingly unpredictable. We all have heard ad nauseum that myeloma is heterogeneous. Because it really is multiple diseases disguised as a single one, we all react differently to the generally accepted treatments. I tell people unacquainted with the disease that you could take two people who at initial diagnosis appear to be identical, treat them exactly the same, and the outcomes could be completely different.
There are also the differences in how we tolerate treatment. Many have asked me about how I reacted to my transplant. Realistically, it wasn’t that bad. And yet I have talked to and read about others – seemingly as healthy as me and experiencing a similar disease state – who had a devil of a time in their recovery. No one seems to have a satisfactory explanation for these differences.
So myeloma is not only debilitating to many and potentially fatal to most, it is frustrating.
But the second part to what I have learned over the past year is that fighting a difficult disease, whatever it might be, both changes you and presents opportunities that never would have arisen had you not been afflicted.
Although I have alluded to some of these developments in the past, it is worth emphasizing again that this dose of mortality can have an extraordinarily positive impact. It gives us a reason to re-examine how we treat others. How we live our everyday lives. What we do with the time that we have.
It also presents us with a platform to help others who are experiencing similar challenges. Some choose to do this in an organized fashion, participating in support groups or hospital-sponsored mentoring programs. Others decide to help in a more ad hoc fashion by sharing our experiences in online forums or simply talking to friends and acquaintances about what we are going through.
I sometimes shake my head in disbelief when I think about some of the unexpectedly positive things that have come out of being diagnosed with an incurable disease. Even writing that last sentence makes me think I am living an episode of “The Twilight Zone.”
Aside from being able to help others, my diagnosis has given me an unexpected opportunity to reunite with a group of people who once were a big part of my life, but with whom I have had limited contact in the decade or so before being diagnosed.
But I am out of space for this column. Tune in next time for the thrilling story of my unanticipated reunion.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [4].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2015/02/09/myeloma-lessons-happy-anniversary-to-me/
URLs in this post:
[1] melphalan: https://myelomabeacon.org/resources/2008/10/15/melphalan/
[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[3] an earlier column: https://myelomabeacon.org/headline/2014/09/30/myeloma-lessons-walking-the-walk/
[4] here: https://myelomabeacon.org/author/andrew-gordon/
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