Sorry for the length of this post. I had chemo (Daratumumab) yesterday and dexamethasone which kept me up all night so I wrote this while high on dex.
His voice was a bit shaky as he said to me, "You need to get your affairs in order. You have multiple myeloma and less than one year to live". Those were the exact words I heard in December of 2014.
I was working as a high school band teacher and performing in the evenings with the Anchorage Symphony. As the only tuba player, I enjoyed being the bass of the brass section. It's an important role for the overall sound of a symphony orchestra. Carrying my tuba for several blocks to and from rehearsals has always been a challenge but I pride myself in being self sufficient. In 2014, the symphony season started in September as always. I had been feeling shoulder pain since July but it didn't concern me at the time. However, by December, at a rehearsal for a holiday pops concert, the pain had increased so much, it was impossible to even lift my tuba out of the car. With great embarrassment, I asked a friend to do it for me. We traded instruments for the walk to the rehearsal hall. I carried his much lighter trumpet. That's when I decided to see a doctor for what I assumed was a routine mechanical issue within my shoulder.
As soon as my final high school class of the day was finished, I took a short trip to a medical clinic of several general physicians. I was assigned a very kind doctor who simply took an X-ray of my shoulder. I guessed that it was a rotator cuff or something similar knowing that it might slow me down for a bit but I would be back to normal relatively soon. After the X-ray, he asked me to wait in a tiny room while he went into his office to examine the results. I knew something was up because he stepped out briefly to shut his office door. What seemed like hours was really about 20 minutes of waiting outside his office. It all seemed very strange. He finally invited me into his office, shut the door and asked me to sit in the chair that had been placed in front of his computer screen where I could see my X-ray results. He explained that I had a large tumor around my second rib. Then he said the words that sounded rehearsed about getting my affairs in order. I was stunned. I walked into the clinic with a bad shoulder and left with a death sentence.
Just four days later, I had my first oncology appointment with the belief that I had just months to live. I was still waiting to break the news to friends and family. When I explained what had happened at my previous doctor appointment, the oncologist was visibly angry. He said there had been so many advances that a one year prognosis was outdated. I felt a happiness that is hard to describe. I remember wanting to shout "I'm going to live!"
I started on weekly doses of Velcade. This went on for about a month until neuropathy in my feet was getting very uncomfortable. So I was moved to Kyprolis, Cytoxan and Decadron two times per week. After three months of chemotherapy in Alaska, I traveled to the Seattle Cancer Care Alliance. (Now it's called the Fred Hutchinson Cancer Center.) I remained there for 34 weeks. Since my cancer was extremely aggressive, they said I needed both an autologous and an allogeneic transplant. The 'allo' transplant donor was a complete stranger from Germany.
Virtually every morning for 34 weeks I would start with a blood draw. They would draw blood from my Hickman line port on the right side of my chest or from from the port lodged under my skin on the left side. I would sit in the blood draw room with up to forty other cancer patients. I got to know the workers at the blood draw desk and I observed the many ways cancer patients deal with their situation. Many appeared to have given in to this disgusting disease. They sat slumped in their chair and talked as if the end was near. They completely identified as a cancer patient first and foremost. In some ways they had already lost the battle with cancer. Cancer owned their body and spirit.
A smaller number of people seemed to insist on being themselves. They didn't dwell on discussing cancer, instead they talked about their future plans just like anyone else without cancer would do. And there was one lady in particular who I observed. She would quietly struggle to stand up and travel to the front desk. She was obviously dealing with pain and weakness. But when she arrived to the three front desk people, she didn't talk about her own misery. Instead she always forced a smile and with a shaky but cheerful voice asked them about their kids or how they enjoyed the weekend. She was genuinely spreading happiness to others while enduring what must have been tremendous pain.
Like others, there were times when I also experienced true misery. Since my myeloma was so aggressive, I had dozens of side effects like rashes, frequent nausea, fevers and the list goes on and on. I was sent to hospital three times during my stay due to signs of potential sepsis. When I wasn't in the hospital, I always tried to take a daily walk outside but twice I collapsed on the sidewalk simply because my legs were too weak to stay upright. But when I would catch myself dwelling on my own pain, I would think of the lady in the blood draw room. I would pretend to be healthy and happy and the result was that it slowly became my reality. The treatment I received in Seattle helped me become healthier but that didn't compare to the internal joy I received by simply making someone smile. For just a fleeting moment, I would forget all my troubles and revel in the happiness of others.
It would be grossly unfair to criticize those who have lost hope. I don't know their pain. I don't know their suffering. No two people are alike and no two cancers are alike so I can't know what is best for them. But I know for a fact that my own superpower is to give the middle finger to my cancer and never allow it to own me. I will have cancer for the rest of my life but it will never define me. Eleven years after my 'one year to live' prognosis, I still play in the Anchorage Symphony and these days, I happily carry my own tuba over the snowy sidewalks of Anchorage, Alaska.
