six months past or one day in

What day is it? The calendar says it is Tuesday, March 6. In one week it will be six months since the autologous stem cell transplant. That seems a long time ago now. Yesterday marked the first day of a second round of treatment which is to continue for the foreseeable future. In fact, when this round of chemotherapy ends that day will mark the beginning of a different round of treatment which will be followed by another round and so on. So yesterday marked day one of a treatment calendar that I expect will continue for the rest of my life. Yesterday also marked the conclusion of a wonderful trip to Long Beach and was the day when the sun broke out on the surf, the sand and the surrounding forest. It was a beautiful day to begin the next part of this journey.

I find that getting to the first day is half the battle. Ever since the results of the stem cell transplant began to surprise the doctors as early as November I have been preparing myself for this next step. It wasn't clear at that time if we would begin as soon as March, but it did become a possibility then. Watching the monthly results come in between November and February it became increasingly evident that Revlimid and Dexamethasone would be on the schedule sooner than we had expected. That has given me some time to work through the sadness and anger, to lament the loss of time - perhaps years - symptom free and treatment free that we had hoped for. Now I am still symptom free but will not likely again be treatment free. Of course, the good news is that there is a treatment and I am able to receive it. Not very long ago there would not have been much left to do in order to stem the tide of these diseases (multiple myeloma and amyloidosis).

Taking the first lot of pills - ten Dexamethasone tablets - yesterday morning felt like stepping onto the roller coaster. There was one final moment with the pills in my hand and then I was back on for another ride. Then last night I took the first Revlimid tablet and gave thanks for a medical system that is paying the whole cost of a very expensive drug ($250 per pill, twenty-one pills per month ... well, you can do the calculations and, if you are a Canadian, know where some of your taxes are going). I was hoping that it would take the Dexamethasone some time to produce side-effects. I know from previous experience that these side-effects build over time and that the second, third and fourth month will become increasingly challenging for me and my family and friends. But there it was already last night. I was full of energy, doing the laundry, reading until late ("11/22/63" by Stephen King - now that's a roller coaster ride), then struggling to get sleep. Then another dose today and more energy. At first it feels pretty good, all things considered. But over time it becomes tiring, in an oddly energetic way. There are also the ups and downs of a cycle that has you taking the pills for four days, then not for four days and so on. Still, I keep remembering that it was effective in lowering my free light chain counts last time and so should already be doing the same thing now.

So that is it for the first day of this new round of treatment. The roller-coaster ride continues and there is no getting off for a good while yet. Given the choices I am (mostly) glad to be able to go for the ride.


  1. Poignant. Thanks for letting us share in this journey with you, Ed.

  2. Hmmm, sounds like a roller coaster, alright. Hang in there, Ed, we're all praying for you. I'm so glad you were able to take in the beauty of our wild west coast, and to enjoy some sunshine too! What a precious treat that must have been.

  3. Janice & Es - thanks for being there, for being here, for me. It is good to share the burdens in this way and to enjoy the gifts of tender mercy that we receive along the way.