the journey continues ... pomalidomide and more

It has been a year and a half since I posted an update on life with myeloma. I am aware that others with myeloma are interested to know how things are going with my cancer journey. So here goes ...

I continue to receive three oral medications: pomalidomide, cyclophosphamide and dexamethasone. At the end of the year I will have completed six years on this program of targeted chemotherpy. I am so grateful and fortunate that this combination is effective. It does mean a monthly eight day spell when I ride the steroid wave caused by dexamethasone. The other main side effect is the weakened immunity that results from taking these pills. Since myeloma is a cancer of the immune system taking drugs that further decreases my body's defenses is not great.

As a result of my lowered immunity I struggled with illness throughout last fall, winter and spring. Two bouts with pneumonia - one in October and another in February were manageable. Nonetheless they lingered and led to a long season of fatigue. I lost weight and strength with gut issues. Fortunately things turned around at the beginning of May.

Then came June. I began to notice that I was bumping into things frequently. After a week or so of this frustration I realized that I was not seeing things to my right. It was quickly discovered that my eyes themselves were normal. This meant that there must be some issue with the way in which my brain was processing the images it was receiving from my eyes. A CT scan revealed the problem - a stroke. Along with the loss of all vision to the right of centre in both eyes I also had great difficulty reading text in a book or on a screen. I was unable to read or write emails or text messages. Fortunately, with the help of vision therapy, I am finding good improvement in my ability to read and write. Unfortunately, I have not had any change to the loss of peripheral vision on my right side. I am leaning to make adjustments for this - though it is surprising how much we rely upon peripheral vision in our every day lives. It does mean I cannot drive. That is a big loss.

Covid19 adds another dimension to life with myeloma. My hematologist has made it clear that I am at very high risk were I to contract the virus. It means that the two of us have been socially isolated since March. Thanks to face-time calls and outside visits over the fence we stay in touch with family (that now includes ten - soon to be eleven - grand-children) and friends. It's not easy but we are fortunate to be able to order the groceries we need and to have medications delivered. On the plus side I am otherwise very healthy. Daily walks that began in May have morphed into a slow and steady return to running. With the onset of myeloma in 2011 and the various treatment regimens that followed I stopped running. This is the first time in the years since that I have felt up to the discipline required in order to run. It is wonderful to be back out jogging on the paths around Crescent Beach and through Crescent Park.

All this is to say that I am doing well and doing my best to stay well.