Sometimes I wish I could just forget about myeloma and put it in the past as a difficult chapter in my life.

I was pretty close to forgetting about it during the three and a half years when I was in remission and did not need any treatment.

That period ended a year ago when I relapsed and started treatment again with a daily dose of 25 mg of Revlimid ^[1] (lenalidomide) and a weekly dose of 20 mg of dexamethasone ^[2] (Decadron).

Even though I think that I am on about the easiest type of treatment (be­cause it is administered orally) and I am responding well to the treat­ment (my monoclonal protein level has fallen to an MGUS level and all of my other blood counts are normal), it is no longer really possible for me to ignore my myeloma. I meet with my doctor monthly, and I have to deal with the side effects of treatment.

However, despite starting treatment again and having had to make adjustments due to side effects, I am still functioning pretty well with an interesting life – especially compared to what some other patients are going through with myeloma.

I still work part time, volunteer part time, and have other interesting things to do, such as walking, singing, reading, and doing stitchery projects. These are the fun things in life which keep my spirits high.

Becoming a grandmother of twin baby boys earlier this year has really put me over the top of happiness and has opened a whole new chapter in my family’s life. Both our daughters and their husbands live nearby, and my husband and I have been able to spend quite a bit of time with the twins, which has been a blessing in our lives.

I have been a volunteer at something or other over the last quarter century, and myeloma-related volunteering is now a priority for me. I think that this will always be the case going forward because it keeps me focused on learning a lot about the disease and its treatments. I have met some terrific people through my support group over the last five years, and we work on interesting projects together, such as patient seminars, annual walk/runs, as well as monthly support group meetings.

I volunteer in my other groups too, but to a lesser extent. One interesting commitment I made was to edit my choir’s newsletter. This stems from my new confidence that I found in writing a column for the Myeloma Beacon. I am also still involved with a parks preservation group, since I love nature.

I am glad that I took up activities such as singing in a choir and joining a needlework guild 15 years ago, when I became empty nested. The friends I have made in those groups have helped me through my myeloma problems all along.

In addition, I am well enough to travel. Recently my two sisters and I met in Vancouver, which we can’t do very often due to our busy schedules. I have been on other trips and out to seminars in the last year, but I just find that my energy levels are lower than before.

Compared to not being on treatments, I need more rest and have to work around the side effects of the drugs. For example, the dexamethasone can make me overly talkative and easily distracted. I therefore take my weekly dex dose at night, along with a sleeping pill for that night and the following one. Revlimid affects my digestive system, so I need to take a laxative on a daily basis.  I also get cramps in my hands and feet sometimes from the drugs.

I nevertheless try to work some exercise into my day, especially walking, since I think it contributes to my overall health and helps to diminish the side effects.

So overall, my life with relapse is not as bad as I thought it would be.

I don’t have a crystal ball, and can’t predict my future, so I don’t know whether I may need other treatments than what I’m taking now. We do what we need to do to survive this disease. Fortunately, there are more and better treatments available now than there were even a decade ago.

And perhaps it is time for me to recognize that myeloma will be part of every chapter of the rest of my life.

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The quotation for this month is from J.R.R. Tolkien (1892 - 1973), an English writer, poet, and university professor, who said: "They say it is the first step that costs the effort. I do not find it so. I am sure I could write unlimited first chapters. I have indeed written many."