Lately I was considering just how time consuming it is for me to be a myeloma patient. Since I have been back on treatments since October of 2014, I have noticed that I now need more time to deal with myeloma.

Although I am really trying to live a normal life and not let the fact that I am taking Revlimid ^[1] (lenalidomide) and dexamethasone ^[2] (Decadron) get in my way, I have to admit that I am slowed down by the treatments.

I have to rest more because the Revlimid makes me tired. At the same time, I take sleeping pills a couple of nights a week to counteract the hyper­­activity caused by the dexamethasone. I also need to take into account the effect that Revlimid has on my digestive system.

As a result, my lifestyle has been altered, and I have to take the meds and their side effects into account when planning my week. For example, I try to get my more detail-oriented work, where I really need good con­cen­tra­tion, done in the ‘non-dex’ portion of the week, because I have noticed that I am in a sort of altered state of mind, and make more mistakes, when I’m on dex.

Then there are blood tests to be taken, appointments to go to, and medications to obtain.

I go in for blood testing a day ahead of my monthly appointment because I need to have recent blood results that show that I am healthy enough to have my Revlimid renewed.

Sometimes, if the lab is really busy, I have to wait for almost an hour to get the vials of blood drawn. Even though I take a book to read or my knitting with me to pass the time, the entire process feels time consuming to me.

When I go back to the cancer center for my monthly check up, there is usually also a wait there. Add to that the need to find parking, or to have a long walk to reach the center, and half a day may have passed before I get home again.

Since I will not get the results of my free light chain and monoclonal protein tests until a couple of days later, I need to call the cancer center and talk with a nurse about those tests, which takes extra time.

When all is cleared for me to continue with the treatments (as it has been so far), a visit to the cancer center pharmacy is in order to refill the prescriptions. I once again have to wait while the prescriptions are being filled.

But, even though all of the above waits for blood tests, appointments, and the pharmacy are time consuming, I feel that it is a very small price to pay for all of the help I am getting to monitor and treat my myeloma. I have been getting excellent care for the last six years!

In an effort to improve my overall health, I try to exercise and eat healthy every day, which also takes up quite a bit of time. I usually exercise 45 minutes or more a day, and my husband and I prepare as many home-cooked meals as possible.

Another aspect of being a patient for me is that I want to study the latest developments in the field of myeloma research and treatments. You just never know when you might need to switch treatments, try a clinical trial, or understand some aspects of this disease. I try to read and learn a little more every week, and the Myeloma Beacon has been really helpful in that regard. I also really appreciate the opportunity to write a monthly column here, and preparing the column takes a few hours each month (but it is time well spent!).

I also enjoy taking part in the activities of my local support group. I have met many other patients and care­givers over the last five years, and we have worked together on projects such as organizing meetings and events. These projects can all be quite time consuming, and I have to try to manage my time so that I don’t get too tired and have enough time for other activities. Working in a group is good, since the work is divided up among different committees, which I try to keep up with.

As I have learned more about myeloma and its treatments, I realized that in Canada not all of the treatments are available that are on the market elsewhere. This has led me into trying to understand our quite com­pli­cated system of drug approvals and funding, especially for my province. This is a really interesting topic, and I have learned that writing letters to the government is probably the best thing I can do for advocacy, along with working for my support group.

So, all in all, being a myeloma patient has become a part-time job for me.

Has having myeloma, or being the caregiver for a myeloma patient, become a job for you, too?

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The quotation for this month is from Benjamin Franklin (1705 - 1790), one of the Founding Fathers of the United States and renowned polymath, who said: “One today is worth two tomorrows; never leave that till tomorrow which you can do today.”