What’s in a number?

Multiple myeloma patients undergo numerous lab tests on an ongoing basis. Part of life with cancer is watching numbers creep up and down. In my case, finally seeing a zero was cause for elation.

April marked nine months since my autologous stem cell transplant and the beginning of another cycle of maintenance therapy.

Complete labs are drawn at the beginning of each treatment cycle. As usual, I received an email a few days later that included the latest lab results. I im­medi­ately scrolled to the bottom of the report to look at my M-spike. Instead of num­bers, this time I saw letters: “Too small to quantify.”

That was the first time since my diagnosis two years ago that I’ve had no measurable M-spike. My reaction to this information surprised me.

I felt elated. I felt relief. I felt accomplishment. Why? In reality, the lab result was only fractionally better than the last four months. As it turns out, my May M-spike returned to 0.1 g/dL. In fact, there was probably no real movement; my monoclonal protein level is probably just sitting on the line between quantifiable and un­quanti­fiable.

My M-spike has been tracked since my diagnosis, and it is a key to quantifying the success of my treatments.

In November 2015, when we decided to start treatment, my M-spike was 4.9 g/dL (49 g/L). Eight months later, before my transplant, my M-spike was 0.6 g/dL. By all accounts, this was a good response to the initial treat­ment, and a good starting point for the transplant. Ninety days post transplant, my M-spike was 0.3 g/dL. Following maintenance therapy, the M-spike crept a bit lower and hovered at 0.1 g/dL.

I’ve mentioned many times that I luckily avoided any symptoms of illness since my diagnosis. The only real sign I had multiple myeloma was in my test results. Is it possible to read such results dispassionately? Per­haps I give too much power to them.

The excitement I felt seeing the “too small to quantify” result was replaced by mild worry four days later when I woke up with a 103.3 degree Fahrenheit (39.6 C) fever. The fever lasted nearly a week, hovering between 101 and 102 F (38.3 and 38.9 C). An irritating cough developed two days after the fever. That prompted a trip to the clinic for blood tests, cultures, and chest x-rays. All the tests were normal, and six days later, the fever was gone for good, slowly followed by the disappearance of the cough.

It’s likely this brief illness was a result of my immune system still recovering from the stem cell transplant. Still, despite the con­tinuously good lab results, I spent a week home from work, sleeping and nursing a fever. Blood was drawn and tests were studied to be sure I hadn’t contracted a virus or infection that could portend a serious illness. Regardless of the good M-spike, I will always be living a cautious life.

This is the reality of multiple myeloma. This is the reality of a disease that is incurable and odds say will re­turn at some indefinite future date. Unlike some cancers or ailments that can be removed from the body and one’s life, multiple myeloma will re­main within me and be my companion forever.

Of course my lab results are important, and I will savor the good numbers as long as they remain. My hope is this will be a very, very long time. I will also count my blessings that my side effects remain minimally intrusive and my occasional fever or cough is mild by comparison to some of my fellow patients’ experiences.

The important lesson I’ve taken from the ups and downs of the last month is that there will be these ups and downs. I can’t invest too much emotional energy in my lab results or even in the occasional fever or cough. I’ve already decided not to project too far ahead or waste my time worrying about what might happen in the future. There simply is no point to this. I’m learning, though, that this mindset has relevance on a daily basis as well.

Was my multiple myeloma more or less serious when the lab results moved between 0.3 g/dL and “too small to quantify?” Did it change how I was feeling or what treatment choices I’d make? The answer to both ques­tions is “no.” The test results have a greater psychological impact than medical importance at this point. Certainly the tests are important, and someday there may be a meaningful change in the results. Until then, I need to keep them in perspective.

I haven’t fully adopted this new mindset. I pour over my weekly and monthly lab results trying to glean insight into my condition. My challenge is to process this information, highs and lows, without attaching too much unnecessary emotion.

Instead, I will celebrate the many days that I am well. The days I get to be with my loved ones. The days I get to do the things I enjoy. The days I can continue to work and accomplish valuable tasks. Having these days and embracing them will be my true measure of how well I’m fighting this cursed disease.

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Photo Credit: (c) 2013 Mark Pouley

A hot day in Seattle is reason to celebrate, and these children join the generations before them that have basked in the cool waters of the International Fountain. One little girl today has found her own “pot o’ gold” at the end of the rainbow away from where the crowd naturally gathers.

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