Muscles for Myeloma: Self Awareness and Doing What You Can

September is Blood Cancer Awareness month and time to focus on how some myeloma patients are developing Muscles for Myeloma. Staying fit is critical for your best myeloma outcomes. Every patient will be different in what they can do, so talk with your doctor, listen to your body and stay as active as you possible can based on your unique situation. 

By Dhruv Deepak

Dhruv was diagnosed with multiple myeloma in December 2017 at age 32. He had been experiencing deteriorating fitness levels, nosebleeds, energy and was generally prone to infection and illness for about a year. This was in stark contrast to his prior experiences as an active, fit adult. 

He went to the ER with severe back and loin pain; the assumption was that it was due to kidney stones. While drawing blood for labs, the doctors found it to be extremely viscous, so much so that they couldn’t get counts. He was severely anemic and with low platelet counts and abnormally high blood protein levels.

This all led to the hematologist suspecting myeloma, which was confirmed through a bone marrow biopsy the next day.

Since his diagnosis, Dhruv noticed that continuous and aggressive treatments have completely curtailed his physical activity. The standard for an active day is now one where he get in about 30 minutes of walking, whereas before he was a regular with exercise and sports.

Inability to exercise properly means that health for Dhruv primarily revolves around diet. He tries to maintain a degree of calorie control and stay away from unhealthy food groups when possible. Overindulgence is rare now, and he has also cut out alcohol entirely.

"I am extremely passionate about food, so I keep the door open for trying new things. Pleasure and experiences are equally important to overall health!

"Everyone’s myeloma journey is intensely personal; we get to hear a lot of stories about patients/survivors conquering physical feats or goals (competing in sports events, climbing mountains etc), which are admirable but not aspirations I share," --Dhruv Deepak

Dhruv says he hasn't tried to push the envelope in terms of physical activity – he finds that his physical state is fragile, and therefore tends to focus on minimizing the impact of medication side effects.

We have really crammed days managing our cancer, our work, and our personal lives. The ability to make time for physical activity in between all this requires some talent, and prioritization is Dhruv's most important step. His tactic is to link time spent on physical activity in a day to some unavoidable daily routine (e.g. time spent on Facebook) – equal time for each.

Activity tracking (using a watch or phone) is useful as it gives an honest appraisal, and the data over time helps nudge you in the direction of positive behaviors. Even 10 extra minutes of walking as a new habit makes a difference.

Staying active is important, but so is self-awareness. The golden rule is to listen to your body.

Dhruv's three techniques to maintain positivity:

• Stress management & relief: I do a short breathing exercise every morning, and use it when I feel stress or negative thoughts. It completely short-circuits any negative streams of thinking.

• Journaling: Every morning, before getting out of bed, I (at least mentally, if not in an app or diary) think of the three most positive/interesting events from the previous day that either happened to me, that I heard of, or that I am thankful for. I try to reflect on how those events made me feel in the moment.

• Passing it on: I try to send at least one thank you or note of positivity to a different person every day. It comes back to you eventually, and there is a network effect – proven by research. The power of positive social interactions I would say that privately or internally, I am obsessively rational or coldly logical about the future. The objectivity I am able to maintain during a period of tough challenges helps balance me, and keeps me focused on what really matters.

"Like fad diets, flash phases of activity don’t really work for me. I believe more in building long- term, sustainable routines. In that sense, I like to think of myself as being ambitious in seeking opportunities to be active, while wrestling with the obvious limitations I’m faced with.

If I get a chance to walk around the block, or take the long route to somewhere, I take it. I try and ask people for ‘walking’ meetings where possible, and generally stay moving if on a phone call. The more opportunities you create, the more you can take.

For the time being, strenuous exercise seems to be out of the question. If I could in the near future, I would approach it by gradually integrating it into my day, in such a way that it disturbs other (often competing) priorities as little as possible."

Thanks to our Muscles for Myeloma sponsors: