BEFORE STARTING ANY EXERCISE ROUTINE, CONSULT YOUR DOCTOR AND LISTEN TO YOUR BODY. As a myeloma survivor, one of the things I miss most about pre-illness is running. I used to lace up my shoes and run five miles a day, four to five days a week. But with anemia and treatments and side effects, I don’t feel that I can anymore. One day I was reading through Facebook posts and I saw a fellow myeloma survivor, Brian Helstien of Southern California, share that he had just completed 1,000 days of running continuously. Add to that, while he was in the hospital doing his auto stem cell transplant, he walked the halls and stairs, oftentimes carting his IV along with him, until he had walked the equivalent of an entire marathon over an 18-day period. I was so inspired and excited! I had to talk to Brian. Maybe he could coach me into being able to run again! So one evening, Brian and I spent quite some time on the phone and I found him fascinating. Hopefully you will, too. Brian's story Brian was diagnosed with multiple myeloma in February 2011. For many years before getting sick, he was an avid runner. From 2004-2009, he literally ran every single day until an intense flu left him bedridden for three solid days. After that, Brian stopped running daily but he chalked it up to lack of strength, stamina and motivation on his part, nothing bigger. Several months later, he went skiing and was winded just walking up a staircase. He knew something wasn’t right. When he got home, he went to a doctor, who ran tests and discovered an M-spike. He was then referred to an oncologist who conducted a whole host of tests where myeloma was discovered. His initial thoughts were how to tell his wife and, with five college age children, how would they make it through college? (Brian works for the University of Southern California, USC, and is the family's primary bread winner.) When I asked him if he was afraid, he said that he didn’t know enough about myeloma to have fear. Brian’s initial protocol began with the Velcade-Dex combo, which he tolerated well. He went to support groups and made the difficult decision to move forward with an auto stem cell transplant, though he initially thought he would decline it. In October 2011, he checked into the City of Hope in Los Angeles for 18-days to do his transplant. To pass the time, Brian began walking the hallways. The Physical Therapy office told him that it was 1/8 mile around the floor. He started doing ten laps in the morning and ten in the evening, for a total of 2-1/2 miles per day. He timed his laps, and pushed his IV cart when necessary. Overall, things went well during his hospital stay. As those of us who've had a stem cell transplant or more know, it's never easy or simple, though. In Brian's case, he slept some 14-16 hours a day, took compazine as often as they would let him have it and struggle with diarhea. Still Brian pressed on, walking those hallways, one step in front of the other (my theme!). One day, Brian had to sit down in the middle of the hallway and rest. There were five days when he was neutropenic and couldn’t leave his room so he listened to his doctors and did what his body and health could tolerate. Brian felt that his commitment to exercising even during transplant would help him recover and heal faster. The nursing staff was on the alert to watch out for Brian and his walking regimen. They even put a yellow wrist band on him that read "Fall Risk." That so teed Brian off so much that to re-center, he had to go-- you guessed it!-- walking. Brian also refused to cut it off on discharge and vowed to wear it till if fell off on its own, which it finally did this past July. The day after his discharge from the hospital, Brian walked 1-1/4 miles. The day after that, he ran the same distance, albeit very slowly. The following week, he ran twice, both days close together, the same 1-1/4 miles. The next week, he ran three times, with the distance just a bit farther. A month later, he was running daily and had increased his distance from 1-1/4 miles to 2-1/2 miles per day. Today he is running 30 miles per week on average and several weeks, he has achieved over 50 miles. Add to that, Brian just celebrated 1,000 days of continuous running without a break. “Seven months post-transplant, I ran a half marathon [13.1 miles]. The money I raised went to the International Myeloma Foundation,” says Brian. The following year, he ran a half marathon faster than he had the previous year. His current goal is to continue improving, running shorter distances but at a faster pace. As I hear Brian explain his training, I asked him for some tips. Because while I am no longer anemic, my body simply doesn’t want to run again (my brain wants to, now if only my legs and lungs would cooperate!). He advises… 1. Keep going. If you’re fatigued or winded, run slower. 2. Each day, go just a bit farther, even if it’s just a few feet more. Build on that. 3. Be consistent. Try not to take more than a few days’ break, because if you do, the strength and stamina that you’re building will disappear and you’ll easily be back to square one. 4. Gradually build strength. Don’t expect for it to happen all at once. Just keep at it. Brian’s health these days is good. He gets labs drawn quarterly. He realizes that myeloma is a journey, not a destination, so he is positive, patient and hopeful. His approach to disease management is that of a chronic disease—he takes care of his physical body, listens to his doctors, and finds humor in everything. I asked Brian if he believes his walking and running helped him recover from transplant. “Absolutely. My doctor said that he has never seen anyone recover so quickly. It made a huge difference. I’m not saying that myeloma has not impacted my life and my body. It has. I have permanent damage as a result of myeloma. I choose to work through it and be positive. We all need to know our bodies and how far we can push them. But I don’t think anyone would argue that exercise isn’t a critical part of disease management.” Brian has inspired me! Yesterday, I ran for seven minutes. Today, I ran for seven minutes and 30 seconds. Tomorrow? I’ll try to go just a bit farther, or at least maintain today’s achievement. I’ll take a two-day break, and run again. Maybe one day I’ll be walking or running a half marathon myself. I’d love that. Thanks a million, Brian. Keep fighting and running!
about the author
Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.