I am a huge believer in the philosophy that you must end before you begin and our vacation to Florida gave us just the opportunity to do this. It was the midpoint of our family’s journey with cancer. The lymphoma was in remission and I would be starting treatment for the multiple myeloma in two weeks.
So Florida gave us the occasion to celebrate, to reflect and to recharge our batteries. We stayed at a hotel in St Pete’s over looking the beach. We woke up with the sun instead of the alarm clock. We swam, we walked, we talked, we watched beautiful sunsets.
And we ate.
After months of not being able to enjoy or taste most food, my appetite came back with a vengeance. I enjoyed crabs and blackened fish at Crabby Bills, consumed huge portions of pasta and salad, experimented with Thai and Cuban food and wolfed down waffles with various toppings from the Waffle House. I will never take food for granted again! I put on some much needed weight and my stomach was happy with me.
We landed in Toronto on August 1st and my chemo treatment began the next day. The chemo for multiple myeloma is significantly different from what I experienced with lymphoma. The lymphoma chemo was R-Chop, an invasive chemo that took place every 3 weeks for a full day. Most of the chemo was administered through IV.
The myeloma treatment has a fancy name: CyBorD, which is a combination of oral and intravenous chemotherapy and steroids. CyBorD stands for Cycloposphamide, Bortezomib and dexamethasone. Every Thursday, for the next 16 weeks, I have to take 22 pills on the day of the chemo, go to the hospital to have bloodwork done and then check in to Chemo Daycare for the IV portion of the chemo. The IV portion is Bortezomib, a drug known more commonly as Velcade, which takes about 10 seconds to administer by IV. That’s it! It is a new and highly effective drug in treating myeloma. The drug is not currently covered by the provincial government for all cases. The cost of each Velcade dose is approximately $3,000! I am expected to go through 16 chemo treatments which will cost approximately $48,000 over four months. Dr. Tiedemann submitted a request to the distributor of the drug in Canada, Jannsen Inc., to approve this drug for me on compassionate grounds. On our last day in Florida, we got a call that I was approved for the drug. Our gratitude knows no bounds as we would have been out of pocket for this cost.
Myeloma is a disease of the blood and approximately 6,,000 Canadians are currently living with it. It is a disease that affects older people. The unique characteristics of this cancer are bone pain and damage, recurrent infections, anemia, problems with bruising and bleeding, and damage to some body organs (particularly the kidneys). While I have myeloma, I am not experiencing any of the symptoms, except for the anemia. My bones and kidneys are fine. Another miracle! For more information about myeloma, stay tuned for our Myeloma 101 blog.
We are now settled into the second phase of our journey and are feeling good. Florida was the perfect place to close part 1 of this journey and we welcome part 2 with optimism and a sense of moving forward.