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Myeloma Lessons: Happy Anniversary … To Me!

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Published: Feb 9, 2015 10:19 am

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 (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 (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, 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.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Andrew Gordon, monthly columnist at The Myeloma Beacon.
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9 Comments »

  • Nancy Stewart said:

    Andrew-

    We share the same birthday. I had my transplant on January 28, 2010. It seems such a long time ago and yet so recent. So many good things have come out of my myeloma diagnosis, as well as some bad, from meeting such wonderful people who never would have come into my life to opening up some volunteer opportunities that allow me to give back to others during their crises.

    I hope that you continue to do well.

    Nancy in Phila

  • Bob McDonald said:

    We are on similar time frames. I was diagnosed in March of '13, but probably had it for a year before. Got my ASCT in April '14 but stayed in the VA hospital for 23 days, then home, but was weak and sick for a week or so. Recovery has been good, except for the fatigue and arthritis symptoms, and the occasional neuropathy in my feet. One day of light working requires a couple of days of recovery. Tramadol is my new best friend. So far have not had any maintenance therapy, and my numbers are looking good.

    I don't like people to tell me what too do -- ask my wife and any ex-boss. The doctors initially told me I had 2 to 7 years to live, but I'm not leaving until I'm good and ready.

    Articles like yours keep me on track and hopeful. Thanks and keep them coming.

  • Thomas Shell said:

    Aloha Andrew,

    I can totally relate to the Twilight Zone feeling of this battle. How can we feel "let down" when everything works well? I feel it also. I don't think we are actually let down, but it's more of a "post battlefield" syndrome.

    We have steeled ourselves for this dramatic battle, which seems appropriate given the complexity of the team entering your room to get your stem cells back. When it's over, however, and all we have to do is take a pill once a day, we are still mentally ready to fight so much harder. This has to be our let down that you and I have experienced.

    The whole journey is pretty fascinating. Thanks for a great article.

    Aloha
    Tom

  • Kathy said:

    Andrew - "unexpected positive things" is my experience as well! Starting a stem cell transplant Saturday (Valentine's Day) and looking forward to more of these positive things. Thank you for sharing as I resonate with a lot of what you say.

    My best to you,
    Kathy

  • matt goldman said:

    Great article - thanks Andrew. The whole journey is an experience. Many positives, some negatives ... all making us better people. I never would have guessed that would happen.

  • mary lee said:

    Thanks, Andrew, for the insight. My husband, Doug, had a SCT in August of last year. He was in the hospital for 4 weeks but, for the most part, everything went very smoothly. He is doing fine and is currently on 10 mg of Revlimid daily. I cannot agree more with the unforeseen blessings that come with this diagnosis. We have met wonderful, compassionate healthcare providers, as well as having gained an infinite appreciation of each day.

    Kathy - Our thoughts and prayers will be with you on Saturday. All the best.

  • Eric said:

    Your comment, "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", rings true for me also. In fact, many individuals never get to have this positive impact in their lives. Thanks for bringing this up, as it is a valuable improvement to our lives as human beings to recognize the need to re-examine how we live.

  • Andrew (author) said:

    Tom – The "let down" is an interesting phenomenon. Look for more on that in a future column.

    Kathy – Best of luck with your transplant. A positive attitude and the discipline to be as active as possible post-transplant will be a big help for your speedy recovery.

    More generally, it is heartening to see that many others share my experience of positive experiences that have come from having this decidedly negative diagnosis. Tune in next month for a detailed look at on extraordinarily positive development in my life that was unlikely to have occurred if I had never been afflicted with myeloma.

  • Mike Burns said:

    Hi Andrew,

    While I would not wish multiple myeloma on anyone, I've been fortunate like you to have had some unexpected positive experiences come about because of the multiple myeloma. I've experienced deeper levels of friendship and love than I knew existed before this.

    One of my bosses told me many years ago that having children changes your life in ways that you cannot possibly anticipate beforehand. That was very true for my wife and me. And I've thought several times over the past couple of years that the same thing could be said for receiving a multiple myeloma diagnosis.

    Looking forward to reading about your unanticipated reunion next month!

    Mike