Myeloma Lessons: The Year (Or Two) In Review
In December of every year, we are inundated with “year in review” lists. The best movies and music albums; notable marriages and deaths; advances in medicine and science. Frankly, I never have been much interested in reviewing the past, choosing instead to look ahead.
But in thinking about the two years since I was diagnosed with multiple myeloma at the end of June 2013, I see that much can be learned from looking back at my experiences, including what I have done right and what I’ve done wrong.
I have captioned this series of columns: “Myeloma Lessons.” My objective in writing them has not been so much to teach but to pass along what I have learned in the hope that I can help those facing similar choices and challenges.
In looking back now, I see two larger lessons from which I hope to draw more general guidance for the future.
Lesson #1: Do Your Research & Be Patient
I tend to be a bit impatient, so it is a constant internal battle to take the time to assemble the necessary information and carefully consider it before making a decision. My failure to properly examine the science and exercise patience illustrates a critical error I made shortly after being diagnosed.
On a Friday evening at the end of June in 2013, I went to the emergency room after a call from my doctor informing me that I was severely anemic and needed an immediate transfusion. I was admitted to the hospital.
On Saturday, the doctor visited and told me that he was 90 percent sure that I had myeloma, but that we needed to do a bone marrow biopsy to confirm the diagnosis. He said that I could remain in the hospital over the weekend and have a biopsy first thing Monday morning, or I could go home and call in on Monday to make an appointment. The appointment might be as long as two weeks down the road.
Being impatient, I elected to stay in the hospital. It turned out that the Monday morning biopsy was a “dry tap.” But the doctor did not seem to be too concerned. I also was scheduled to see the hospital’s myeloma expert Tuesday – a very quick appointment, to say the least. I went to the appointment Tuesday, still reeling from the diagnosis that I had an incurable form of cancer and not having done any research on the disease.
The doctor strongly recommended induction therapy with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron), and I immediately agreed to begin the treatment the following week. We briefly discussed the “dry tap,” but the doctor assured me that the treatment would be the same regardless of the result of the biopsy, so there was no need to repeat it right away.
Because the biopsy was pretty painful, due in part to the doctor repeatedly trying to find some aspirate, I was in no hurry to repeat it. This proved to be a potentially significant mistake.
What I did not realize at the time, and for a number of months thereafter, is that the aspirate must contain a significant number of myeloma cells in order to do the genetic testing which determines a myeloma patient’s risk level. By the time I realized this, several months later, the induction therapy had been so effective that there were no myeloma cells in the aspirate produced by the follow-up biopsy to do the genetic testing.
The bottom line for me is that, two years post-diagnosis, I have no idea of my risk level. Knowing this could well have an impact on my current therapy choices, particularly what type of maintenance therapy to pursue.
From this I learned a valuable lesson: do your research and try to practice patience. I am still paying the price of uncertainty regarding my risk level by learning this lessons too late.
Lesson #2: Use The “Will I Regret It?” Test
In the course of the past two years, I learned something else about myself that has informed the many decisions I have had to make.
Prior to deciding whether to have a stem cell transplant, I felt the need to seek a second opinion. My treating doctor is a strong proponent of a transplant (maybe even two) for every myeloma patient who is physically able to handle one. So I sought out an expert who was at the other end of the spectrum.
The doctor I saw for the second opinion generally does not favor a transplant unless there is no reasonable alternative or if it is part of a clinical trial. When we met, she had thoroughly reviewed my file, and during our discussion it became clear that she was not in favor of a transplant. I explored with her all of the pros and cons of transplant versus no transplant.
She sensed that I was wavering and she asked what turned out to be the key question: If I did not undergo the transplant and things later went south, would I regret not getting the transplant? The answer was “Yes.” When she heard this, she conceded that it was probably best that I go forward with the transplant.
Realizing that answering the “Will I regret it?” question was so important, I used that standard to make another important decision: Should I retire?
I had been thinking about retirement prior to being diagnosed with myeloma, with the thought that I might take the leap in 2015, but I had not reached a decision.
Once I was diagnosed, however, and experienced a whiff of mortality, I started to think about retirement more seriously.
Many friends and colleagues tried to convince me to keep working, but what I kept thinking was: If I keep working and things go south on me a year or two down the road, would I regret not spending more time with family – especially those cute little grandsons? The answer clearly was “Yes.”
Still, I had many, including my fiancée Audrey, encouraging me to continue to work. So I compromised and took a part-time position.
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I have learned a great deal in the past two years. Many of the smaller lessons are detailed in my previous columns, among them: be vigilant; don’t just rely on your medical team – do your own research; take advantage your status as a cancer patient to help and inspire others.
Looking back on the past two years, the larger lesson for me is: Look inside yourself and use what you find to guide your choices.
Hi Andrew,
Your column really struck me this month. My mom has myeloma and is doing well for now. At dinner a month ago, my moms cousin (who was in his early 70s and excellent health)said he might be thinking about retiring but he would hate to spend any of the money he had been saving his whole life. This past Monday he went into the hospital and passed away a few days later of unsuspected colon cancer.
Long story short my husband and I have decided I will be leaving my job soon and spending more time with my mom and soon her new grandchild. I am in favor of retiring and spend time with your family!!
I too had a dry tap experience and it was at least two years before I was able to get a good FISH test that showed I was low risk. I was curious but did not worry about knowing my genetic risk profile those two years because I was responding well to the treatment and that is what mattered the most to me. When I first did get a good aspiration there was not enough plasma cells to do a FISH. I considered that a high quality problem and I was not eager or wishing to get enough myeloma cells for FISH.
I believe you put a lot of thought and consideration into your decisions and made good ones I hope work out well for you. Though I do have an early disability retirement option it is too early for me to retire especially if a cure is found some day and I live to a more normal life expectancy, it would be financially hard in the outlying years. But then I do not want to work up to my last days and die with a bunch of money still in the bank and vacation and sick days unused. Something I have been thinking about more now that I am being treated for relapsed myeloma. It is a bit of a challenge to balance out how much longer I have with the new treatments becoming available and when to pull the trigger and retire early. I believe a lot of those with myeloma struggle with these choices. Best wishes and hope you are doing well,
Eric
Andrew
Your comments are timely for me also, though admittedly from a slightly different perspective. I just sent out an Update to about 100 family members and friends.
My update pertained to my recent experience with radiation treatment for newly active myeloma in my mid-thoracic. The crux of my comments were that the side effects of radiation were far greater and more debilitating for me than I had been led to expect.
More than that, however, is the fact that I could have avoided the need for radiation had I followed the dictates of my "gut" months ago. So why didn't I follow that nagging sense to ask to be put me back on treatment? Well, none of my blood-work supported that approach: my numbers simply did not support the view that the Myeloma was again active, and I so wanted to believe that!
Andrew, your concluding thought was "Look inside yourself and use what you find to guide your choices." Your admonition towards patience was also salient.
My conclusion was similar:"Distinguishing between fear and your own inner dictates is perhaps the most difficult task we as humans are confronted with throughout our lifetimes."
Thanks for timely and thought provoking article
Aloha
Daniel
Dear Andrew,
Because most of us intermittently face decision points about treatment, I find your emerging protocol a terrific tool. You've inspired me to work on my own.
I'll weigh in personally on the retirement decision issue. Once I knew I was not going to be long-lived enough to worry about the cost of assisted living, I realized I could afford to retire at 62 based just on what I had saved, without reducing my spouse's resources. To help myself feel less deprived of life by this disease, I tell myself that, in retirement, I will experience every year of remission as two years of pleasure and meaningfulness. The added bonus is that, by taking on only selected small work projects and volunteering, I feel like I'm still a contributor, but I no longer have to maneuver around the fatigue I experienced while still working. Each day I finish most of what is on my to-do list, and people can't arbitrarily add to it. Very gratifying!
I've taken to describing my current life as "relaxed productivity." I'm guessing that this self-pacing and minimizing of tiredness can only help my battle for the longest possible survival with quality of life. My guilt about how my spouse's life has been changed by my illness is lessened by the fact that I can now do more around the house so that he is less burdened when he comes home from work. Because I'm not tired, I enjoy cooking more. I have time for T'ai Chi, which is proven to lower stress, and thus to assist the immune system, however minimally.
In short, I recommend retirement to those who can afford it and have other life-affirming avocations. I recognize that I am speaking from a vantage point of privilege and feel grateful for that, and always aware that socio-economic status can affect outcomes and options for all of the folks I now think of as "myeloma mates."
With gratitude to the Myeloma Beacon, which has sustained and educated me since my diagnosis in early 2013,
Mary Childers
Jess- The story about your mom's cousin is an example of why I decided to semi-retire now. While I would love to pass along a good inheritance to my heirs, I think we all agree that it is more important to be present with our friends and family as much as we can.
Eric - You make good points as well. It is hard to find the balance with so much uncertainty. I identify with your comment that those of us who did not get FISH results at diagnosis because of a dry tap can only find out our risk status if / when we relapse. Right now I am hoping I remain in the dark for a long time.
Mary - I too am 62, and it was easy for me to decide the retire when I did. Admittedly, like you, I seem to have the resources to do it now. I really like your comment that now you get two years for every one, since you are spending more of your time doing what you want to do. I will try to remember that and to be thankful for every day.