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Mohr’s Myeloma Musings: Pre-Game Nerves

By: Steve Mohr; Published: June 11, 2014 @ 3:26 pm | Comments Disabled

During my 25-year career as a boy’s basketball head coach, I coached over 600 games.

Regardless of whether it was the 1983 Class A state championship game in my rookie year as a head coach (we lost), or games against opponents that we were overwhelming favorites to defeat, my state of mind the night before each one of those 600 plus games never changed.

That state of mind is difficult to describe. It was one of unbearable ex­cite­ment, tempered by an actual feeling of fear. Fear that I had not prepared the team well. Fear that they would not play to potential, no matter how well I had prepared them. And the fear of losing - a fear that is hard for any­one who has not coached to fully understand (although any­one who has coached probably knows all too well what I am talking about).

Last night – the night before I was admitted for my stem cell transplant – I had that feeling again for the first time in my life since retiring from coaching.

However, before delving into my emotional state of mind the night before the transplant, I would like to share more about the preparations for the transplant that has occurred since my last column.

In my last column [1], I explained that I felt like I had a new lease on life after my doctor stopped the Revlimid [2] (lenalidomide) and dexamethasone [3] (Decadron) treatment in preparation for the transplant. Better yet, my doctor indicated that it might be at least six months post-transplant before any type of treatment would be initiated.

I optimistically thought that the moderate neuropathy I had been experiencing would disappear, and that it would do so quickly.

The fog of chemo brain has without question dissipated since treatment stopped. Unfortunately, the neu­rop­athy still remains. I only hope that this is due to the fact that my expectations of undoing the effects of treatment over seven months in just one month were unrealistic, and not an indication that the neuropathy is permanent.

Ten days ago, I received Neupogen (filgrastim) injections (15 shots over 5 days) in preparation for the stem cell harvest, which was scheduled for June 5. Neupogen stim­u­lates stem cell production. My wife gave me three shots each morning before we both headed off to work.

Bone and muscle pain are the most common side effects of Neupogen. Unfortunately, I was not spared them. Even though the bone pain I experienced over the last ten days was not debilitating by any measure, it was far more intense than any I have previously experienced.

The night before the stem cell harvest, I received an injection of Mozobil [4] (plerixafor). While Neupogen stimulates the production of stem cells, Mozobil helps release the stem cells from the bone marrow into the bloodstream. The Mozobil injection is closely timed in relation to the time that the harvest is scheduled. This was illustrated to us by the fact that, when we arrived at 5:15 p.m. for my 6:00 p.m. appointment to receive the injection (hoping to get done early), we were told that the injection could not take place until 6:00 p.m.

At the vein-check appointment three weeks before my scheduled harvest, the nurse conducting the check determined that a port would not be necessary for the stem cell harvest, and that the collection could be done with a simple IV line in each arm. Not having to deal with taking care of a port until the chemo infusion was welcome news for me.

The result of the harvest was very good. The minimum number of cells needed was 2 million, and 5 million was what the staff had hoped for. I was able to produce 9.6 million cells in just over four hours. Upon hear­ing that final number from my nurse, I jokingly told her that, for the first time in my life, I was an over­achiever.

What struck me most about the stem cell harvest was how labor intensive it was from the staff’s standpoint. During the four hours I was hooked to the machine, I was never left unattended. Hospital personnel closely monitored the machine, and constantly made adjustments on it. They logged numerous notes.  The head pathologist (a world renowned expert) stopped by my bed on at least four occasions, commenting positively on the collection of the "product" -- the term they all used in describing the collected stem cells.

During my journey in dealing with this disease, there have been three occasions so far when I have ex­per­i­enced what I call those "catch your breath" or "uh oh" moments.

The first, not surprisingly, was when I received the phone call informing me that I had multiple myeloma.

The second occurred at my first radiation treatment. The actual radiation treatment was anti-climactic, as it required me to do nothing more than lie still on my back for seven minutes. However, walking into that room through the heavy steel doors and seeing the various body protective guards and the radiation machine (which seemed sinister in appearance) gave me reason to pause and contemplate what my life was now like.

The third occurred when I watched two lab technicians and my attending nurses carefully preparing my "product" after the harvest to be taken away for storage. As they carried my "product" away in a cooler, I couldn't help but think, "There goes my future."

I began this column comparing my emotions on the eve of my stem cell transplant to how I felt the night before games during my coaching career.

The night before a game, I would go through a checklist of questions to determine in my mind whether we were prepared to be successful. Questions like: Did I prepare the players physically and mentally? Are our offensive and defensive schemes sound? Will we play hard? What course-of-game adjustments will we possibly have to make? Will our crowd be a factor? Are we talented enough to win?

Applying those questions to the biggest "game" of my life that is scheduled for today yields some interesting answers.

Did I prepare myself physically for the stem cell transplant? The answer is a resounding no. Despite the fact that my doctor emphasized repeatedly that good physical condition greatly impacts transplant outcome, I have done nothing to improve my physical condition. The only thing I had control of, I failed to take care of.

Are the schemes (strategies) of this treatment sound? Without question. The cancer center where I'll be having my transplant does over a hundred of them a year, and I think it is safe to assume that thousands of patients have benefited from having this procedure done there over the years.

Will adjustments need to be made? Undoubtedly. As we all know, myeloma is such an individualistic dis­ease in terms of what its victims experience that adjustments to treatment are probably routine.

Will we (transplant team and me) play hard? Yes. My favorite saying to my team was, “Don’t let fatigue make a coward out of you.”  I only hope that the fatigue that one experiences after the transplant doesn’t make this saying apply to me.

Will our crowd (my supporters) be a factor? A resounding yes. Crowd involvement can make a big difference in the outcome of a basketball game. If there is one thing I can be sure of, it is that my many supporters will make their presence known over the next month.

Finally, are we talented enough to win? The staff undoubtedly is, and I have confidence they will be able to carry me through to the final buzzer.  Having not gone through this before, the jury remains out on me.

I never entered a game thinking we couldn’t win.  That has also been my attitude throughout this contest with myeloma.  Having said that, eventually I learned there are games that, no matter how well prepared we were and how well we played, victory just was not meant to be.  That is also the sobering reality of having mye­lo­ma.

Time will tell if victory is meant to be and what exactly that victory entails.

And on a final note, I have agreed with the Beacon Staff to share updates about my transplant in a dedicated thread [5] in the Beacon discussion forum [6].  You are welcome to post on the thread -- whether it be questions, similar experiences, lessons learned, advice, or just words of support.

Today, June 11, my port will be installed and the melphalan [7] (Alkeran) in­fused.  This Friday, June 13, the in­fusion of my harvested stem cells takes place.

I hope to be able to post in the forum several times during that time to report on how things go.

Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [8].

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


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2014/06/11/mohrs-myeloma-musings-pre-game-nerves/

URLs in this post:

[1] column: https://myelomabeacon.org/headline/2014/05/20/mohrs-myeloma-musings-shelf-life/

[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[4] Mozobil: https://myelomabeacon.org/tag/mozobil/

[5] dedicated thread: https://myelomabeacon.org/forum/steve-mohr-stem-cell-transplant-t3448.html

[6] discussion forum: https://myelomabeacon.org/forum/

[7] melphalan: https://myelomabeacon.org/resources/2008/10/15/melphalan/

[8] here: https://myelomabeacon.org/author/mohr-steve/

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