Mohr’s Myeloma Musings: Full-Time Status
“Today is the first day of the rest of your life!”
“No kidding," I mutter under my breath every time I see that saying on a card or in an advertisement. It is such an obviously true statement, why does it have to be said? What makes it so profound?
For some reason, that saying came repeatedly to mind on Wednesday, October 30, 2013, as I took my first dose of dexamethasone (Decadron) at 6 a.m. and my first dose of Revlimid (lenalidomide) 12 hours later. And while I think the saying would be more accurate for those of us battling multiple myeloma if it said, "Today is the first day of the rest of your NEW life," the saying took on a relevancy for me that had previously not existed.
Everything has changed now that I have started treatment. For the first time since my diagnosis in April 2012, I feel like a cancer patient.
For 16 months, I was an exception to the rules of myeloma treatment (if such a thing exists), as my doctor and I agreed to watch and wait, even though the disease was steadily progressing. I actually felt guilty sitting in the waiting room at my three-month check-ups because I couldn't help but notice that most of the other patients there were obviously more impacted by the disease than I was.
The dex has induced insomnia, and the peripheral neuropathy that is settling in and intensifying with each treatment cycle, alternating bouts of constipation and diarrhea, and battles with fatigue that come and go without warning all confirm one thing: I am no longer an exception to the rule.
A new, harsh reality, with experiences shared by thousands of others, will now become the norm: I am no longer part-time. In fact, I am full-time now. I punch the clock every day when I take my Revlimid dose, and I work overtime once a week when I take my dex.
So want does this new reality require of me?
First, I must have a stronger yearning for knowledge about this disease. The stakes are so much higher now. As an educator (36 years, 8 years as a school superintendent), I believe, and I have preached, that “Knowledge is power.” Yet over 16 months, I chose to be guided by the opposite belief of “Ignorance is bliss.”
As I indicated in my first column, I had little interest in learning more than the rudimentary details of the disease. In hindsight, there were positives and negatives in this approach.
I didn't agonize over every decision that had to be made. There was no "paralysis by analysis" on my part. I paid little attention to all the data that was given to me from the myriad of tests. If my doctor thought that we should watch and wait, that was good enough for me.
Some might argue that this is a far too simplistic approach in dealing with such a complicated disease, and I respect that opinion. A more serious, curious approach on my part from the outset would have certainly provided better, more substantive information for my family and friends. They deserved better than what I provided and had a difficult time understanding the watching and waiting process. It might have also resulted in a different course of action.
Secondly, this new reality will require a much higher level of trust. It has been easy to trust my doctor from the outset. He has not been afraid to say "I don't know" when he doesn't have an answer to a question. I admire that trait in people, especially those who are considered experts in their field.
He has been completely honest in sharing the pros and cons of the course we pursued in watching and waiting for as long as we did. He has answered every email I have sent him, in a timely manner and patiently, regardless of the hour they were sent.
Continuing to trust my doctor will not be difficult.
Putting my newfound desire to become knowledgeable about this disease to the test, I actually read every line of the highlights of the prescribing information that came with the first Revlimid prescription. The information and data is overwhelming. However, I trust that Revlimid is safe if used and monitored correctly.
I hope that I will have the patience to trust that it will have its desired effect, even if things may initially go slow. Patience is not one of my virtues.
As a man of faith, a part of me struggles to say this. However, fate has a say in most things and I must resign myself to those things that can't be explained, good and bad.
How else can I explain why my family doctor decided to send me on to the James Cancer Center when my lesion that had been present for several years had not grown? What caused my oncologist to call me weeks after seeing me and determining there was nothing to worry about, only to recommend a bone marrow biopsy?
Fate treated me well in those two situations but what kind of cruel joke was it playing at the end of June 2012 when, just two weeks after I had completed my last radiation treatment, our family was on vacation attempting to get our life back to normal after that initial round of treatment and we received word that my wife had been diagnosed with melanoma?
Finally, I need to continue to be appreciative of my situation. I am convinced that adopting an appreciative attitude to my doctors, my treatment center, family, friends, and my church has served me well through this journey and has played a big part in my keeping a positive, forward-looking attitude.
The technical game plan for treating this disease has been plotted by the experts: 15 mg of Revlimid daily for 21 days followed by 7 days off, 20 mg of dex once a week, and a Zometa (zoledronic acid) infusion once every five weeks, followed by a stem cell transplant in June.
My journey so far has not been difficult when I compare it to the battles others have been fighting, even with the side effects and loss of quality of life I have experienced so far during the first three cycles of treatment.
I nevertheless suspect there will be tough times ahead. I have no control over the success of the technical game plan. The success of the technical game plan will be measured by the tests that all of us in the multiple myeloma universe are so familiar with.
Knowledge, trust, an acceptance of fate, and an appreciative attitude are all things I have control over. They will be my personal game plan to complement the technical game plan.
While these traits and their impact on my condition and the challenges I will face cannot be measured in a tangible way like the technical game plan can be, I am convinced they will serve me well as I move forward with treatment.
The ultimate goal is to battle whatever lies ahead.
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
.
Steve
University of California at San Francisco web site suggests Vitamin B6 and R-Lipoic Acid. I use it and it minimizes neuropathy. Used it through Velcade treatments and now Revlimid treatments. Look it up, it improves quality of life at little cost.
Steve,
Make sure to watch your hemoglobin levels. If you can hear your blood rush in your ears, get your levels checked. Do not suffer with anemia as I did. It is not necessary. I have been on Revlimid for over 3 years and finally my body said "no more for you"! I had so many issues that were not easy to deal with. For instance - a nose bleed that lasted a week, off and on. Not a little one either, this was a flood!. The next was the low hemoglobin to the point of transfusion. Two units of whole blood and it only brought up my level to 9 when normal is 11.
Watching and waiting is not a bad thing. I have two doctors who care for me. One I see monthly for blood work, Zometa treatment and monitoring my M-spike. The other is a myeloma specialist in Augusta, where I had my transplant in 2011. I see them once a year now. I did real well after transplant.
But mainly I wish for you is continued remission and hopefully soon there will be many more break through in this disease.
I am wishing you and your wife a long remission from cancers, after you have taken the treatments required. Once your 'counts' start to fall, and you get back to normal health with your blood, all of the treatments taken will be worthwhile.
It's odd how 'twists of fate' turn us one way or another ... some to the good, some not. We myeloma patients are lucky to be being treated in this era though, for at least we have much better chances of recovery than even was possible a decade ago. Thanks for sharing your story in detail with us here! You are a good educator!
Steve,
Thanks for such an honest and heartfelt article. Your story sounds a lot similar to mine, only my mm was found totally by accident from an mri of a sore shoulder. Since I had some bone lesions in 4 bones I wasn't smoldering and did have some elevated levels and slight anemia. Me and my doctor elected to start full blown treatments right away and hit it hard. Even though I'm probably late stage 1, I believe like you, being an old athlete, to hit things aggressively for better outcome.
Yesterday after 13 weeks of CyBorD treatments I was told I was so far ahead of where they thought I would be, that in 3 weeks they will do a total retest to see where I am and depending if they have killed it low enough ... ASCT in a few months is in my future. That's a little scary but good in a way since 3 different oncologist tell me that at least for the present time that gives us the best chance for long term survival.
I asked my personal oncologist that if he were me sitting where I was yesterday would he have an ASCT, his answer was that at the current time he would. With all the new drugs and treatments his answer might be different a year or two from now. So like you said, you deal with where you are at the time you find yourself in this situation. You make the best educated and informed decision possible and don't look back and second guess yourself.
There fortunately are several paths we have available to us with this disease. There are many cancers where those patient are not quite as fortunate as we are. Believe it or not, I just lost a long time friend to pancreatic cancer. He only made it a year. That used to be the fate of many multiple myeloma patients years ago. 1 or 2 years tops.
Thank you for sharing your story!
My husband has just recently been diagnosed with multiple myeloma and we are feeling quite lost. His story begins with lower back pain and an MRI that brought with it something unexpected. This led to a bone scan that pointed toward no problems, but blood proteins slightly high. Suggested running blood again in 2 months, which we did. Still high, so referred to oncologist who ordered a bone biopsy that showed myeloma cells. One tumor on spine, but none elsewhere, and first bone marrow biopsy showed no marrow involvement. Set up radiation but, just before radiation treatment was to begin (literally the day of), a CT scan showed more tumors. This sent us to a larger cancer center 40 miles away. Waited for appointment, ordered another bone marrow biopsy, which showed marrow involvement. Just learned via phone that the FISH lab work apparently shows some abnormality, but not in the high risk category.
We are thinking we want a second opinion, not that the diagnosis will be different, but we are feeling like we are not getting the time and information we would like to get from our doctors. When we were told the results of the bone marrow biopsy, both doctors had beepers that kept going off and had to step out more than once. Is this normal? We want to be able to have the attention of the doctors as we are new to this and have several questions. Since this is our first round with cancer we are completely unsure of what doctor visits should be like. I was taking notes and the doctors told me I didn't need to take notes, she'd give me a copy of the report, but I want to take notes on the questions we ask!
The journey of treatment seems like there will be plenty of questions as to what is normal and what to be concerned about, and I want my husband or I to feel we can count on the medical staff to respond to our concerns. He has had one infusion of Zometa, and that was tough! He felt like he had the flu for about 2 days.
Any comments regarding the early journey is greatly appreciated. They seem to have moved away from radiation and said they would begin with standard treatment of Velcade and another drug. Do people still get radiation for the tumors? Thank you for looking at my post and offering any information you may have!