We had an appointment with Dr. Tiedemann last week and he discussed with us the progress of the treatments so far, and the plan for the future.
STATUS OF CANCER
In spite of two months of chemotherapy, the Multiple Myeloma has not decreased as much as Dr. Tiedemann would have liked. The doctor is looking for at least a 90% decrease, or even a 100% decrease, before continuing with a stem cell transplant. He performed another bone marrow aspiration and biopsy to get an accurate reading on the number of myeloma cells in my bone marrow. Based on the results of the bone marrow biopsy (which hopefully will be available at our next appointment on October 31st), Dr. Tiedemann will likely recommend another two cycles of chemotherapy with Velcade or another drug (Revlimid). This will likely take all of November and December.
STATUS OF STEM CELL TRANSPLANT
We began the stem cell process, starting with a big dose of pre-stem cell chemotherapy (Cyclophosphamide) on October 1st. I had a Quinton line — tubes implanted in my neck — to enable the stem cell collection. The insertion of the line was a small surgery that took about 30 minutes, but the pain and discomfort lasted for days and days.
After a week of trying to mobilize the stem cells (i.e. push them out of the bone marrow into the blood stream), enough stem cells were collected for one transplant, before the stem cell production decreased. The target was to get enough stem cells for two transplants, so it was quite disappointing that we could not collect the full amount.
Once the cancer is eliminated by 90% or more, I will have to go through the stem cell mobilization and collection process all over again to get additional stem cells for a second transplant, in case one becomes necessary. If everything goes well, the timing for this will likely be January and February of next year.
As we left the hospital after seeing Dr. Tiedemann, we were quite deflated. We hadn’t expected this setback – we had expected the Multiple Myeloma to be wiped out after two months of targeted chemotherapy. And, I was prepared to spend most of December in hospital recovering from a successful stem cell transplant. I was hoping to close the chapter on cancer by the end of this year. Now it looks like it will take a little bit longer than we had anticipated.
Our family was impacted with the news in various ways: Sabrina strongly weighed against accepting an eight-month contract with the Aga Khan Health Service in Dar-es-salaam, Tanzania, which was to have started in January. (She had already declined another offer to start this past September, to be with me during the stem cell transplant process). Shayne spent the weekend at home, working remotely, but also tried to stay close to me, to keep my spirits up.
We thought through my situation – inside and out – over the next few days. We went to Jamatkhana daily and prayed. And, we received encouraging words and prayers from the leaders of our Jamatkhana. All of this introspective and discussing our fears out loud caused us to change our paradigm.
First, instead of fretting over having two cancers simultaneously, we thanked God for an unexpected blessing. The chemotherapy treatments for the Lymphoma (R-CHOP) not only defeated the Lymphoma but also knocked down the Multiple Myeloma by 50%. (In terms of measurement, the M-Proteins produced by myeloma reduced from 46.3 grams per Litre of blood to 23 g/L.). Further, the chemotherapy treatments for the Multiple Myeloma (CyBorD) reduced the M-Proteins to 17 g/L. This is considered, in medical terms, a “Partial Response”, which is better than “Stable Disease” (no change) or “Refractory Disease” (increase in M-Proteins). Our goal is to get a “Very Good Partial Response” (90% decrease) or a “Complete Response” (100% decrease).
Second, at the 5K Walk after-party, I met a new friend, Roma, who went through a successful stem cell transplant in August this year. We agreed to meet for coffee or lunch. Being downcast after the news I had just received, I wrote to Roma and cancelled our meeting. Her response? She gave me some tough love and said that two additional months of treatment was a small price to pay in the scheme of things. She reminded me to focus on all the things that were great in my life, starting with a supportive family and wonderful friends. She asked me to think of people who were worse off than me, and to count my blessings. And there are a lot of blessings to count: the independence to drive to hospital appointments, friends to have lunches with, raising critical funds for Multiple Myleoma, going to Jamatkhana several times a week, top-notch care from a dedicated team of professionals at The Princess Margaret. Most of all, I have strong hope for a happy and fulfilling future in which I can contribute meaningfully to the world.
In the end, we have strengthened our resolve to beat this cancer, and not let it hamper our future plans (Sabrina is going to Dar in January!) and we have decided to stop calling this a “Setback” – just a Speedbump (Speed Hump?) on this journey through cancer.
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