Mohr’s Myeloma Musings: Pre-Game Nerves
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, I explained that I felt like I had a new lease on life after my doctor stopped the Revlimid (lenalidomide) and dexamethasone (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 (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 in the Beacon discussion forum. 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 (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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Good luck Steve! I hope that everything goes well for you, and your column is a really good journaling account of what you have encountered so far on this journey.
I remember vividly how the stem cells, which had been fractionated out of my circulating blood, were bright orange in colour. I think that they are actually transparent, but some blood was mixed in with them. And then the bags being put into vats of liquid nitrogen at the end of that quite long day, and the relief at being told I had been able to provide more than enough stem cells also!
I think that the writing you are doing will be very good for you doing this whole procedure.
Great article, best of luck with the transplant. I'm scheduled to go in for my auto BMT on June 24th.
Good luck and thanks for sharing your experience. I'm coming up on my 2 year anniversary and doing great. The best advice for post stem cell recovery and nueropathy is to go swimming as often as you can. It helped me immensely.
Aloha Steve,
Great article.
Good luck with your transplant. I hear the worst part is the boredom of being stuck in your room. I just completed my stem cell harvest for the future. I agree the machine is pretty amazing.
Know that your "crowd" is more than your family. We in the community are watching your progress and cheering for you to WIN!
Aloha
Tom
Steve,
Great article. I hope everything goes as well as possible with the stem cell transplant. It sounds as though you are in expert hands, and even though you have some trepidations (you would not be human if you didn't!), I think you have a great attitude. Sounds like your harvest went excellently well! Good luck, and I will be rooting for you everyday! I hope you can post on the Beacon from the hospital so we can keep track of your progress! From your columns, I am going to assume that you will be a model patient and be out of the hospital in record time!
Steve,
I had my AST two years ago and was doing Revlimid maintenance at 15mg. I now am enjoying "remission". No chemo, no Zometa, and no radiation!
I considered my stem cell transplant as a rebirth, or new birthday. I had no issues while in isolation after transplant. I was TIRED, the exhaustion after transplant is something I had not experienced. But my doctors insisted I get up and walk. Build up your strength is what he told me. I did. I only had one problem, the nuprenic diet! Yuck!! I was so glad to have good food again.
I wish you peace and rest while you go through the treatment. It was not bad for me, because I had a great team.
Best wishes!
Steve,
Congratulations on coaching 600 Games! Amazing feat.
Like Cindy above, I'm almost two years out as well. I found that the key to recovery was paying attention to the nurses who will want you up and walking around sooner and with more frequency than you may want. The same discipline you brought to coaching will serve you well post transplant.
I join all of those who will be thinking of you as you move through the SCT procedure and look forward to future updates.
Blessings, Steve.
Steve,
I remember when they took my stem cells away asking myself: What happens if somebody kicks the cord out of the plug on the freezer? Of course, the systems used to store the stem cells have redundant backups for power failures, but I was trying to humor myself.
You sound as ready as anyone for this. It may seem at times things are going in the wrong direction. I remember when I was in the hospital a week after the melphalan was administered, looking at myself in the bathroom mirror brushing my teeth. I was 55 lbs lighter, skin hanging off my bones, and with no hair anywhere, wondering how I got here and when the tide was going to turn back in my favor. I looked at the upside. I had none of the dreaded mouth sores, no fractured vertebrae, and the fatigue allowed me to get really good sleep. I was not in any pain. I had managed to kick my opiate addiction with the help of the nausea medication I was given. I had only thrown up three times, less than other times when I had been sick with stomach l flu. This was really going to be a battle of being patient and persistent.
The tide did turn -- 3 months later I was riding my bike again, 4 months later I went skiing and I never would have thought I would be doing any of that so soon again at that time.
Keep us up to date on how things progress.
Steve,
Great article, you're doing fine, stay positive and yes stay active.
Hope your down days are short lived. There are some good places around campus where your wife can get you something better to eat if you're up to it.
Since the hospital is on this new health kick, it's hard to say what you'll get to eat.
Weekend looks great! So get outside and enjoy the weather, BTW Happy Father's day to you !
I'll keep watching for your updates.
Steve,
I am sorry to tell you, the worst is yet to come ... you are only in the first half. I have never commented before, so pardon the honesty. But it's true. After the transplant is the toughest time. Just push through, please push very hard.
I am 4 years out and feeling great. I think we had very similar starts to this, but now I feel great. The few months after were not so much. Remember that it will be temporary. Relax and allow the doctors to do the work. My neuropathy is gone and my strength is back. I walk in Central Park every day with my dog when I thought I couldn't get the mail 4 years ago.
Just float on the love and push through the next few months. You can win this game, it's just a long one.
Steve,
Good luck on your transplant. I had two transplants in 2008 and I'm still kicking around. Post transplant, you will experience changes in your senses of smell and taste which will take about 2-3 months to get back to normal. I went back to work after approximately 8 weeks. The biggest problem is the weakness and fatigue you will experience. But exercise a little each day and you'll get stronger pretty quickly. I had my 2nd transplant in May and was golfing by July.
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
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STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN! STEE-VEN!
..............to infinity and beyond!!!!
Steve,
(from just down I-71 about an hour.)
Ehhhhh,....too much talk.
Just go kick Butt!
Coach,
You have a great team - and a lot of people in the bleachers!
Game on !
Best,
Susan
Good luck, pulling for you!! I am sure everything will go well.
Ron
Happy to hear that your getting your transplant soon. My husband was diagnosed in November 2013. We have had many setbacks and he is one month out from transplant. He has been back into the hospital twice since transplant and is still there today -- not because of the cancer, but the chemo side effects. The weight loss and the toll it has all taken on his body has made his blood pressure drop severely low.
I pray that the Lord saves you from any of the nasty after effects of the chemo before transplant. We were so excited about transplant and then it was like, wow, 10 minutes and a little bag of stem cells to save his life. Good luck and God bless.
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