A thought came to my mind this morning. Seventeen years ago today, Valentine’s Day — 1999, after a day of waiting anxiously and with headaches from the stress, we sat on the stairs of house in Lancaster, MA waiting for a phone call from our doctor hoping for a life changing wish.
Finally, after what seemed like eternity, the phone rang. The doctor wished us a Happy Valentine’s Day and told us that we had incredible news. We had dreamed of that day for so many years and it was finally here. We were finally going to become parents.
Today, we found ourselves waiting once again, for a call from our doctor. This time instead of sitting around waiting, with the kids at school and Mike in his office, I kept as busy as possible, completing errands, laundry, shopping leaving no time for idle and negative thoughts. We grabbed the pups and the snowshoes and went out for a beautiful stroll in the woods. ( OK, seriously, it was a workout — do you know how much snow we got in the last week? ). Upon returning, we finally got the phone call we had been waiting for, except this time, we received confirmation of our next life changing plans.
I have been on my 6th line of treatment (Carfilzomib, Cytoxan, and Dexamethasone) for four cycles and have seen a remarkable reduction in Multiple Myeloma (MM) cells in my bone marrow. In October, my bone marrow was approximately 70% MM cells and today, the measurement is down to 15%. Although we were pleased to see this reduction, the MM cells need to be less than 5% in order to get the maximum benefit from an allogeneic (allo) or donor stem cell transplant.
The key to a successful allo transplant is to enter into the process in complete response ( no myeloma detected ) or at least having less than 5% MM cells present. This allows for the donor stem cells ( immune system ) to have time to graft and the donor immune system to mature so they can detect and fight the residual cancer cells.
So, today, with 15% MM in my bone marrow, we continue down the path of reducing the remaining MM cells to prepare myself for transplant. Up until the phone call confirmation today, we had thought this meant another round of the current treatment followed by the transplant. However, confirming some feedback we got yesterday, the plans have changed and are more aggressive. Next week I will be admitted into the hospital for a 96 hour continuous chemotherapy infusion called DCEP ( Dexamethasone, Cytoxan, Etoposide, and Cispatin), an older potent chemo treatment. This aggressive treatment should take care of any remaining residual disease. The costs are higher with more unpleasant side effects (nausea, vomiting, mouth sores, hair loss (ugh), and severe impacts to blood counts. It should take about 4–6 weeks for my counts to recover. After that, efficacy of the treatment will be confirmed with with a another bone marrow biopsy result. Hopefully I’ll be down to 5% or less and I will be ready for transplant.
So this is really becoming real now. Although the last several months leading up to now have been challenging physically and emotionally, the real challenge is about to begin. In all honesty, I’m scared out of my mind. I’m completely exhausted. I’m sad and mad at the same time. We should be planning for February Vacation with the kids, planning college visits with the boys. And instead I’m getting ready to literally fight for my life. We are a household of 4 teenagers, we really don’t have time for this cancer crap. This was not in the plans.
Thinking back when we got that call 17 years ago, we had our whole lives ahead of us. We were a young healthy couple sitting in our first home madly in love and eager to start a family. We had no idea how life would test us so much. But we were also blessed beyond measure with not only one healthy baby but 2 babies x 2! Life has been beautiful for us. Even in these last 6 1/2 years we have had more amazing moments than some people have in a lifetime. And I know this. And I keep reminding myself of this. But I still have those moments when I feel completed defeated. I just need to keep reminding myself that we are not in control. Only God is and I just pray that he gives us the strength we need everyday to get through this. Our kids know we love them with all our hearts. They know we are scared. And they are too. But one day at a time, one foot in front of the other we will move forward.