In November 2019, I got my second stem cell transplant and Munira Version 3.0 was born.
And Munira Version 3.0 was on fire. I wrote a book, travelled extensively, worked, and embraced my role as a grandmother to two little ones. Life has been a whirlwind of living fully and fearlessly, with intention. Until now.
In the past couple of months, multiple myeloma has slowly been making its presence known and now has officially resurfaced, raging in my body. This second relapse was entirely predictable as myeloma is not yet a curable cancer. Someone asked me recently what myeloma is. It is the cancer of the plasma cells in the bone marrow. The bone marrow is where our red blood cells, white blood cells and platelets are created. Just like red blood cells are needed for oxygen and energy, and platelets help prevent clotting, white cells are the defence mechanism against infections and viruses. Plasma cells are a type of white cells. Myeloma is like an unwelcome guest that turns the plasma cells cancerous, so that they grow uncontrollably and invade the bone marrow with impunity. It prevents the red blood cells, white blood cells and platelets from doing their work. The way myeloma manifests for me is it creates chaos in my system as my hemoglobin drops considerably, infections compound and multiply, and fatigue is like a blanket that I wear reluctantly. My oncologist wanted me to start treatment immediately but my weeks-long cold turned out to be pneumonia, so I have to deal with that first.
And treatment starts next week, on December 14th. For the first two myeloma treatments, I went through chemotherapy and stem cell transplant. Thankfully, there are many more treatment options now than existed 10 years ago, when I was first diagnosed. The treatment I will be on is based on immunotherapy, known as DRD (Daratumamab, Revlimid and Dexamethasone).
Daratumabab, which was officially approved by Health Canada in 2016 and made available by Ontario in 2018, is a type of targeted cancer drug called a monoclonal antibody (MAB). It is a smart, sneaky drug that recognizes the myeloma cells, quickly informs the immune system, which in turn attacks and kills the cancer cells.
Revlimid is an immune-modulating drug, which stops the growth of cancer cells. It is standard treatment for myeloma maintenance. It is not exactly chemotherapy, although I understand from friends who are on this drug that the side-effects resemble those of chemotherapy.
And then there is Dexamethasone (Dexa), which is a steroid used to reduce inflammation It gives me energy and makes me feel like a superwoman until I come crashing down. I have a love-hate relationship with Dexa. Nagib has a hate-hate relationship with Dexa because he has witnessed me doing crazy things on Dexa, including vacuuming the entire house at 3 am in the morning, and buying everything that shows up on late night TV (…and if you order in the next 20 minutes, you will get a second frying pan for free. Operators are standing by.).
The treatment regimen is quite precise. For the first two months, I will be in the hospital once a week to get DRD. And then from months three to six, I will have to go to the hospital once every two weeks. After that, I will receive DRD once a month. If this treatment works, it should give me 44 months of Progression Free Survival (PFS), which is almost 4 years of life. I will happily take it! And after that time, there is the possibility of clinical trials and exciting new discoveries like, CAR-T, which involves extracting the patient’s T-cells, reprogramming the DNA in a lab, and transfusing them back into the body to recognize and kill cancer cells. (Space age stuff, for sure).
So how am I feeling? A little overwhelmed at starting treatment again after 3 years. A little excited to try this promising treatment. And mostly hopeful and optimistic that DRD will once again knock down the cancer and allow my body to heal. To give my body a fighting chance, I have decided to take a year off work to focus on self-care. I am not good about resting and I don’t know how not to work, so this will be an interesting year. I will think of it as a sabbatical, a time to take a pause from the busyness of life.
Some of the immediate things I want to do is spend oodles and oodles of time with Amaal and Mos. I want to expose them to Dr. Seuss and baseball and magic castles and Christmas songs. I plan to watch many Hallmark Christmas movies and binge on all the Star Wars movies and spin-offs on Disney. I want to spend time with family and friends and read books. I want to learn how to make cinnamon rolls and poke bowls. I want to meditate more and walk 10,000 steps a day. Cleaning the garage while I am on Dexa is sounding like a great project (I can already see Nagib roll his eyes!). I literally can’t wait to see what is possible for me in 2023. Let the adventure begin!
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