Six people I care about are currently living with a cancer diagnosis, including myself. Three have been told they are cured but continue to undergo repeated PET/CT scans. Two are being treated for metastatic disease. I have been living with a diagnosis of smoldering myeloma, which involves watchful waiting. According to The American Cancer Society, 70 percent of cancer survivors live in fear of recurrence. Cancer is only one of the diseases that requires one to move forward without all of the answers. For instance, 23.5 million Americans live with an autoimmune disease, which often defies diagnostic or prognostic certainty. Each person has to find his or her own way. This is mine.
I was diagnosed with a unique autoimmune disease in 2005. At the same time, a marker for multiple myeloma was also found. It was initially considered pre-cancerous but crossed the threshold to smoldering myeloma in January of 2008. In retrospect, my autoimmune problems probably began in 1997 with the first of two spontaneous frozen shoulders. If you have never known anyone with this particular condition, formally called adhesive capsulitis, it is both exquisitely painful and debilitating. Range of motion is minimal and any movement triggers such paroxysms of agony that simple things like dressing or driving become herculean efforts. I later realized the orthopedic specialist felt as helpless and frustrated as I was in the face of this puzzling syndrome. While this disease can be approached surgically, the sticky glue-like substance that causes the “freezing” usually reabsorbs spontaneously in a year, as mine did. The surgeon wisely counseled me against surgery. I was in enough pain that I would have probably tried anything. I appreciated then, as I do now, his integrity and professionalism. However, I did not appreciate his comment as he left the room, struggling with his own frustration, “You know, if I had to deal with this all day, I would kill myself.” Although not meant to cause further pain, it surely did. Left on the table, still in a Johnny, I was now holding the helplessness for us both.
Eight years later, in 2005, I developed an illness that defied any diagnosis for many months. Triggered by a virus, the muscle pain was excruciating. Turning over in bed required my husband to lift my head by my hair and turn it gently so that I did not have to contract neck muscles. My sed rate, a non-specific marker of inflammation, was sky high. The infectious disease specialist tested for every known bacteria, virus, fungus and parasite. This is when the marker was found in my blood that could be a precursor to multiple myeloma. When I sat down for the first time with a rheumatologist, his first words to me were: “Why are you here and not in oncology?” Really? I don’t believe that this doctor said this to be cruel, but I do think he was somewhat detached and looking for certainty when there really wasn’t any. It is uncomfortable to not know, but sometimes it is a better alternative.
It was five months after the symptoms began for my pain to finally be controlled with high dose prednisone, which I remained on for a year. The side effects were extreme: a 70-pound weight gain and significant bone loss.
This led to a hunt for an alternative treatment. After a few false starts, one of the new biologics, Enbrel, was successful and allowed me to begin a difficult steroid taper. Believing he was being supportive, the doctor told me not to expect to lose all the weight I had gained. After all, he informed me, “You are post-menopausal.” Was this a disease in itself? But my doctor hadn’t factored in tenacity when he proclaimed that I would lose maybe half of what I had gained. A colleague handed me a packet of information about a naturopathic institute not far from my home. I decided to switch gears, and within a year, I lost 10 pounds more than I had gained, learned a whole lot about prednisone and the pancreas and returned to my high school weight — which I have maintained since! Three years after the original symptoms began, I was doing well and being followed for the multiple myeloma marker as well as my autoimmune disease. It was scary each time I went to the bone marrow transplant unit to have my markers checked. It was unclear to everyone whether the two things were related or just coincidence that the marker was found. And then the numbers kept rising. The doctors were certain enough that things had progressed to active disease that they began to discuss stem cell transplants and expected post-treatment survival. I agreed to another bone marrow biopsy. I also went back to the naturopath, who suggested I begin taking medicinal mushrooms grown in Japan. The results of the biopsy were not perfect but not as severe as expected. The number of plasma cells had increased, crossing a threshold to the diagnosis of smoldering myeloma (from something more innocuous — MGUS), but for the first time in three years the marker in the blood was significantly down! No treatment was necessary. And so it has been for the last four years, maintaining — or more accurately — returning to equilibrium. Living well with uncertainty is a process, not a destination.
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