I had never known anyone who had spinal collapse, nor had I know anyone who had compression fractures in their vertebrae. And even though I had been diagnosed with multiple myeloma, I never expected spinal collapse to happen, nor did I expect it to come on so suddenly. My father had multiple myeloma also -- he was diagnosed in March 2002 (and died in January 2008) -- but he never had any bone problems. In June of 2007 I was 5'1" tall, and 1 month later I had shrunk 2 inches.
For those with multiple myeloma, serious complications occur as the cancerous plasma cells collect in the bone marrow. There, these cells disrupt the normal biological processes like the production of red blood cells (often causing anemia), and the cancerous plasma cells also disrupt the process of bone building. With multiple myeloma, bone building is slowed and bone breaking down is sped up. If the bone breakdown affects the spinal vertebrae, it can lead to spinal collapse.
For me, shrinking suddenly was just the outward manifestation of spinal collapse. The inward manifestations were continuous pain, excruciating muscle spasms, and a great deal of difficulty moving. I was unable to walk upstairs, so I began sleeping on the couch. I was unable to care for myself in the simplest ways -- I couldn't
dress myself, reach with my arms, shower, or wipe myself after using the toilet. Luckily, my daughter Laura was able to stay and take care of me for the entire summer, as she was preparing for her wedding, and planning to visit regularly anyway. I was sorry that she faced what few 24 year olds have faced, in terms of caring for her mother, but I was extremely grateful to her for being so devoted and loving. It seemed somehow prophetic that she was so close by my side for so many weeks just before she was married. The only other time she was so close to me for so long was the 9 months before she was born.
Beginning in June 2007, I would sleep on the living room couch, and Laura slept on the floor next to me. At whatever hour in the middle of the night I needed to go to the bathroom, she would get up to help me. And it would take me from 30-45 minutes to get up from lying down each time I got up, trying to move so that my spine stayed mostly straight, and trying to move so that I didn't trigger any muscle spasms. I can honestly say that the first month of spinal collapse, before I received any treatment, was living hell.
With so much difficulty moving, I stayed home from mid-June through mid-July except to see doctors and have medical tests done. My contact with the world outside of my immediate family was through the visits, phone calls, and e-mail. I am very grateful for e-mail, because I was able to maintain contact with a wide network of friends and family who prayed for me, sent me love, support, healing energy and uplifting messages. I am also grateful for the devotion of friends at the Jewish Community of Amherst, who conducted a healing circle for me, visited, cooked and delivered meals, and came to offer their love and support. I welcomed all the help that was offered.
I didn't realize at first that what had happened to my back was caused by the cancer, and several doctors in the area were convinced that my problems were not related to the multiple myeloma. Luckily for me, though, my oncologist did realize that the symptoms I was displaying were from the myeloma, and that it was time for chemo to begin. So in mid-July 2007 I went to the hospital for my first introduction to chemotherapy treatment of multiple myeloma.
Chemotherapy consisted of Velcade, Thalidomide, and Dexamethasone, each on its own prescribed schedule, but all 3 were administered on the 1st day. And all 3 are constipating, to me anyway. By the 5th day, my bowel had shut down. So on the night of July 24, 2007, which was Gene's and my anniversary, we called the ambulance to take me to the ER. I remember leaving the house on a chair that I was strapped to, and it was tilted back as I was carried down the sidewalk. I exclaimed with delight as I saw the stars in the clear sky above me -- I hadn't seen the stars yet that summer.
It was a long night in the ER. Dinner had nowhere to go. Four enemas and 1 suppository later, the doctors still could not get my intestines moving. I was in intense pain from my back, and now my digestive system was shutting down. Living was not only no longer fun, but it was just too hard. I was at a place where I didn't care if I died that night -- and it breaks my heart to recall that I had lost my will to live. I was in a stupor, either from the pain meds, or the chemo, or the toxicity of my body, and I recall going in and out of consciousness, until at one point in the wee hours of the morning I turned to Gene and said, "I decided to stay."
So I made the conscious decision to heal. I wanted to dance at my daughter's wedding. I wanted to see my grandchildren. I wanted to live. But it has been a very long road, healing this body with a collapsed spine. It has taken a level of courage and patience and strength and perseverance that I didn't know I had. But then that is another story.