A while ago, while tidying up the medicine cabinet, I came across an un­used portion of Revlimid capsules and some dexa­meth­a­sone pills. The Revlimid, just three capsules, had expired. Of course my husband and I returned the unused medications to a hospital pharmacy for proper dis­posal.

It was startling to me to realize that these unused medications were still there. I mused over how Revlimid and dex had helped get me back into remission after a relapse four years ago. I might still be taking Revlimid if it were not for a secondary cancer intervening two years ago. I stopped taking myeloma drugs at that point in order to get treat­ment for the other cancer, and I still haven’t returned to taking them.

That does not mean that I think I am done with myeloma treat­ments. I think that the nature of the disease is that I will relapse again, and I watch my blood tests closely every month for signs of that. If I were to need more treat­ment, I am not sure what form it would take. Pills? Infusions? Subcutaenous injections? Will I need to go to a treat­ment center on a weekly basis, or will I be able to just take pills? Will I be in a desperate fight for survival, or just go back to some sort of ongoing drug treat­ment?

These thoughts came to the forefront when I returned to the fall season of my wonderful choir here in Calgary. It will be the 40th season of the choir in 2019, and it has been accepted to perform at a music fes­ti­val in St. John, New Brunswick. Choir members needed to sign on for that by the end of Sep­tem­ber. I have traveled before with the choir on trips to Comox, British Columbia in 2015 and to Ottawa, Ontario in 2005. But before I could sign up for this trip, I had to think about what it would be like if I were to be back on myeloma treat­ments.

As it stands right now, I am below the levels of mono­clonal proteins and serum free light chains that would constitute a relapse. However, my counts seem to be rising slightly. At an M-spike of 0.34 g/dL (3.4 g/l) and a free light chain ratio of 1.7, I am glad to be living with a low level of the disease.

But when I looked back at my lab results before my relapse in 2014, I found the fol­low­ing trend:

When I re­lapsed from myeloma the first time in 2014, my M-spike went from 0.33 g/dL (3.3 g/l) in August 2013 to 0.48 g/dL (4.8 g/l) in June 2014, to 1.05 g/dL (10.5 g/l) in September. That is when I went onto 25 mg of Revlimid (21 days out of 28), and 20 mg of dex (weekly). So in retrospect, it took 11 months from August to the fol­low­ing September to get into a full relapse.

If my disease were to follow the same timelines as the last time, I would be in a full relapse by the end of next summer. That is too close to the time when the choral fes­ti­val is going on. Of course, I don't know for sure if that will happen, but I don't want to feel obligated to go to an important event if I am not feeling well or am on treat­ment again.

It is difficult for me to project more into the future than about three months at a time right now. Anything I sign up for has to be cancelable. Plus I feel it is not fair to the organizers of an event like a choral fes­ti­val to sign up unless I am pretty sure I can go.

After giving it ample thought, I decided that attending a four-day fes­ti­val of intense musical activity next summer is out of reach for me. It was a disappointment to me to come to this conclusion, but I realize it's better for me to just stick to my normal routines to stay healthy. I have been to other fes­ti­vals and performed a lot in the past with the choir, so maybe it is time for me to slow down a bit. I will still try to perform in our concerts in Calgary. At those concerts, even one long day of rehearsing and singing on risers makes my feet so numb I can barely walk, so I think that tells me something too.

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The quotation for this month is from Israelmore Ayivor (1989 - ), a writer from Ghana, who said: "Don’t live life anyhow, else you get any­where. Plan your life somehow and you can get somewhere. A slow plan is better than no plan."