What Myeloma Teaches Me

Long and short chains

I have lived with multiple myeloma since 2016. It has been a challenging experience but I have been sustained by the many things I learned: about cancer, immune systems, our health system, my body and emotions, family, and life in general.

Some of these lessons may be interesting to you–in spite of the fact that they are rooted in one person’s experiences and conditions. I have listed them below and will add to the stories as my journey progresses. I will be happy to hear from you–and read about any lessons of your own you would like to share.

For those of you who are dealing with myeloma (including family and friends), I suggest you check out the Myeloma Canada site (https://www.myelomacanada.ca/). They have excellent documents, brochures, and other resources that explain the disease in accessible form, outline many of the challenges, and offer suggestions for living with with it. You may also find several sites where patients share their experiences and explore options for living with myeloma. One example is Smart Patients via https://www.smartpatients.com/

It takes a conscientious doctor to save a life
I was introduced to Multiple Myeloma via what seemed to be a minor issue of anemia. My doctor noticed its persistence—and rather than dismiss it as normal individual variation, she decided to check for possible causes. Internal bleeding and haemoglobin abnormalities were high on the list. A colonoscopy showed there was no obvious internal bleeding and my haemoglobin size, shape, and quantity were within normal limits—but the haematologist to which I was referred noticed an elevated level of plasma antibodies that warranted a closer look.

In July 2015 I met my oncologist at the Montréal Hospital Cedars Clinic and began a long-term relationship with him and multiple myeloma. By September 2015, a bone biopsy, x-rays, and MRI had provided enough information for a diagnosis of “Monoclonal Gammopathy of Undetermined Significance” (MGUS). It showed a slight abundance of non-functioning haemoglobin cells in my blood. “It may go up, it may go down, or it may stay the same.” my oncologist reported, “That’s why we call it undetermined significance. Our strategy is to keep an eye on the levels and see what happens.”

I went home from that consultation with a 6-month appointment and a smile whenever I thought of the diagnosis. Someone in medicine must have a sense of humour. Most of all, though, I carried a new appreciation of the diligence of my doctor and her perseverance in the face of slightly abnormal results. It meant that my diagnosis was made at an early stage of my cancer—well before it was manifested by bone lesions or kidney failure. I continue to thank her for saving my life.

Myeloma is a complex disease
In the case of multiple myeloma, I am faced with renegade plasma cells that insist on reproducing clones of themselves—thereby making antibodies that are useless for fighting diseases. Antibodies are critical for the destruction of a variety of invading bacteria and viruses. Variety is a necessary condition—since we are confronted by hundreds of potentially dangerous substances each day: viruses, bacteria, dust, and pollen. It is the platelet’s job to identify and create antibodies that identify them and call upon the white blood cells to attack (among other things).

With multiple myeloma, the cloned plasma cells crowd out the healthy ones, clog up the kidneys, and interrupt the normal process of bone regeneration. Since my doctor had caught the process early, both my kidneys and bones were in good shape. It was the proportion of functioning haemoglobin cells that were providing the indication of potential trouble. Above a level of 120 g/L was within tolerable levels, but if it fell below that level, then treatment was required. When my level reached 116 g/L, my oncologist offered a number of treatment options. The most appealing was associated with a clinical trial of Daratumumab. I registered as a case for the trial and was randomly selected to be a member of the comparison group. I would be treated with Lenlidomide (Revlamid) and Dexamethasone by oral ingestion. In preparation for the treatment I received a bone marrow biopsy, full bone x-ray scan, EKG, lung functioning test, and chest x-ray. Finally, in November 2016 my 28-day cycle of treatment began.

I'm alive because of thousands
I’m alive because thousands of rats, rabbits, and people have sacrificed their lives and time to understanding the details of our immune system. As I explored the process I became more amazed at its complexity, the challenge of uncovering its secrets, and the many contributions to our understanding from people in a wide variety of scientific explorations. Key among these are the studies of heredity (e.g. Aristotle, Darwin, Mendel, Fleming, Franklin, Watson and Crick https://www.newscientist.com/article/dn9966-timeline-genetics/) and immunology (e.g. Lady Mary Wostley Montagu, Cotton Mater and his slave Onesimus, Jenner, Lister, and Pasteur https://en.wikipedia.org/wiki/Timeline_of_immunology).

It also includes my oncologist who has devoted his career to understanding the details of our immune system and the various options for dealing with disorders. I came to a new appreciation of specialization in the medical field. I also felt enormous gratitude that people have dedicated their intelligence and skills to understand the processes better. My life depends on it.

Caring and competent support staff make the health system work
Our medical system depends on specialists who focus their attention on very specific aspects of our health. From a clinical and institutional point of view, however, this creates new challenges since we must find ways to integrate the understanding of each specialist when a particular patient is to be considered. In my case, for example, my general practitioner depended on expertise from a gastroenterologist, haematologist, and oncologist. In turn, my oncologist made use of expertise from a pulmonologist, cardiologist, orthopaedist, neurologist, and nephrologist—to name a few. Each of them in turn called upon technicians for the x-ray scans, MRIs, respiratory tests, and ECGs. How can this intelligence be brought together to treat a patient?

In the past, when my general practitioner required consultations, he or she would give me the names of the specialists (or a list of them) and would ask me to make appointments then report back when the results came in. This was an arduous process—often involving multiple phone calls, voice messages, and faxes. It was compounded by the changing departmental designations in hospitals and clinics that left me wondering why the most ignorant person in the chain (me) was left with the most complex tasks.

When I was introduced to the Cedars Cancer Clinic, however, I was overawed by their process of patient support. As before, my oncologist identified a list of specialists which I should meet—however, this time, the list was passed to the support staff. I was invited to sit with them as they contacted each specialist, arranged a time and place for each appointment, and in the end handed me a page listing those appointments with appropriate contact information. These staff members were the ones who knew how to identify the proper institutional department, find ways to negotiate full agendas, determine alternate phone numbers where required, and ensure call-backs when necessary. They also had the technology available to accommodate computer, fax, phone, and email options when required.

I was so impressed by this system I wrote a letter to the provincial health minister and hospital management supporting the value of these front-end staff people and the services they provide. I was thrilled to receive a response from the MUHC hospital management acknowledging my letter and indicating that the Cedars Clinic system is planned to be replicated throughout the hospital.

I'm living in a new body
As I settled into a few cycles of treatment, I began to discover new symptoms and changes in my body. Some of them were anticipated in the long list of side-effects included in my trial documentation but there were others that seemed unusual. This began a long process of identifying the sources of the changes. Were they the result of the disease, the cancer medication, side-effects of the cancer medication, the side-effects medication, old age, some other disease, or just the blips and buffetings of life? This question was constantly on my mind and reinforced at each cycle as the treatment team conducted its inventory of effects.

Answering this question is a long-term process. Tingling in my toes, for example, may be a one-off event, or it may be the precursor to neuropathy as a result of the cancer medication. Only time will tell. Is the constipation due to the medication, insufficient roughage, dehydration, or the stress I was feeling as my life seemed more precarious? What about the fatigue—was this medication, stress, or simply laziness? Many of these symptoms I had experienced before, but they were always short-term and easily managed by slight changes in my diet, exercise, or motivation.

Each new symptom led to the exploration of some action for its alleviation—sometimes successful and sometimes not. I also realized that the “sometimes not” outcomes were often harbingers of longer-term outcomes that may be with me for some time. As the list grew: neuropathy in my feet that felt like I was continually walking on sand, a tendency to constipation, weakening eyesight, lowered stamina levels, and deepening fatigue—I began to realize that these were likely to be with me as long as I took the medication (i.e. probably the rest of my life).

The disease and medication had changed the basic characteristics of the body I had come to understand over my 72 years of life with it. I was now living in a new body.

The challenge was to learn how my new body worked—its limitations and my responses to them.

It's like driving a used car
I remember when I purchased my first (used) car that mechanics seemed to be of two types. The first had a vision of the repair as a re-creation of the original vehicle. What would it take to make the car look and function as a new one? The second had a much more modest (and realistic) vision. They would ask How can we fix the problem? and How long do you want to keep it running?

I discovered that I was faced with a similar dilemma. My initial response to the myeloma diagnosis was one that reflected the first type of mechanic. It was my usual response to illness—whether it be a cold, flu, hernia, injury, or any of the other health challenges I had faced. It meant a short period of treatment, some recuperation, and maybe a bit of surgery or workout program, but the goal was to get back in the form to which I was accustomed—the car which I originally purchased.

This expectation had been modified somewhat as I discovered the effects of old age, but the vision remained. Perhaps there were a few more squeaks and less pep in the engine, but the original model was still there—and could be rejuvenated with a little extra care and exercise.

Myeloma has changed that vision. I am now driving a different car—used, for sure, but also battered by changes that are irreversible. My recovery questions have shifted to those of the second mechanic. The answers have changed the way I view my future.

“How can we fix the problem?” led me to explorations about the limits and strengths of my new body. How much neuropathy is tolerable? How many naps are necessary to manage fatigue? What will happen if I change the timing of my medication? The answers to these questions have led me to a lifestyle that is reasonably manageable with a few tweaks—so long as my vision is not that of me at 50 years.

“How long do you want to keep it running?” becomes a useful reminder of my options and strategies: from deciding about dental work to organizing projects. My to-do list has not become smaller, but my expectations about their accomplishment has been significantly modified. Instead of my previous 8 to 10 hours of available project-hours, I now am working with 4 or 5.

There have been some important benefits of my used car status and aspirations. Its basic features continue to allow me the luxury of dabbling in projects, visits, and activities which I feel are important. The testing of limits has not only made me appreciate those things that work, but the slowed down routine and reduced expectations contribute to a more leisurely life that is quite compatible with old age. Fortunately, my family has (so far) been able to accommodate most of the new features.

A daily log is essential
When I joined the cancer trial I was asked to keep a daily log of my medications and any major changes in my body or mood. The space on the form they gave me was so small that it would be hard for me to record more than medications.

My 40+ years of teaching sociology made it clear that if I were to record sufficient information I would have to come up with a different form. As a result, I began filling in my own daily log with other aspects of changes, feelings, and activities in which I was involved.

I began by recording some of the most probable symptoms as listed on the trial contract. I added information about what I was doing, when it occurred, what were the kinds of preconditions that might contribute to it, and how long it lasted, for example. This was information that would help me identify why those symptoms occurred, whether they might be related to the medication, or simply the results of other things that were going on in my life. For example, when I began to feel tingling in my toes, I was sure to include whether I had been sitting for a long time, whether it had occurred at a particular time of day, and so on. I attempted to keep the record small and easy to complete. I found, for example, an extra 15 minutes before bedtime was the best time to record some of these items.

After about two years into my trial and treatment I realized how the additional information allowed me to see patterns that were not visible when focusing on specific events. One of the most dramatic was related to Thursdays. It turned out to be the day that my back pain seemed to disappear, my energy levels increased, I could begin projects and actually finish them, and my attitude was consistently optimistic.

Saturdays, on the other hand were the days I had trouble getting out of bed, I would start a project and run out of energy, my attitude was much more pessimistic, and I was much more irritable than usual. I realized these are the classical symptoms of depression.

It was my log that led me to see the role of my steroid medication in this pattern. I took them on Wednesday, so my Thursdays and part of Friday were my “up” days. Saturday and Sunday, on the other hand were “down” days. Once I recognized this pattern, it gave me an obvious way to reorganize my life: don’t plan stressful or difficult projects for Saturday and Sunday—wait for Thursday and Friday.

The recognition also gave me a new appreciation for people who experience depression on a long-term basis. My experience is short-term, and I know it will be better by Monday. I have also developed a kit bag of techniques to deal with my “down” days. These techniques are not extensive, nor particularly difficult, but they make a big difference to my ability to function on Saturday and Sunday.