Myeloma Tales: Brian Helstien on Surviving & Thriving Post Diagnosis
A Q&A with myeloma warrior Brian Helstien on surviving and thriving post diagnosis. (The photo above is Brian's running schedule post stem cell transplant!) MYELOMA CROWD: Hi Brian and thanks for sharing your myeloma journey with our readers. When were you diagnosed with multiple myelom? It was in February 2011. As a runner, I had run every day from March 2004 through December 2009. I got sick at the end of 2009 and couldn't get the energy to run more than about ten straight days throughout 2010. I knew I was sick but too stubborn to see a doctor until I couldn’t even climb the stairs to our room at a ski resort in December 2010. Finally, I went to see a doctor who found my multiple myeloma. MYELOMA CROWD: Since your diagnosis, what treatments have you had? I started Velcade and dex in March 2011. I added Cytoxan (CyBorD) when I asked for additional cycles so I would not be undergoing transplant during the time my youngest son was graduating from high school. I had an auto stem cell transplant in October 2011 and went into a clinical trial. My arm of the clinical trial was followed by consolidation therapy (cycles of Velcade-Revlimid-dex) from December 2011 through March 2012 followed by maintenance therapy of Revlimid. Today, I am still on Revlimid (5mg 21x7). MYELOMA CROWD: Where are you at in terms of your health? Today I am in complete response. I was in stringent complete response but since June 2015, my kappa/lamba numbers have been bouncing around in and out of bounds (because they’re bouncing, we’re watching but not doing anything yet). MYELOMA CROWD: Are you on any kind of maintenance treatment besides Revlimid? In my second clinical trial, I was on maintenance of Revlimid. 5mg 21x7. During the first phase of the trial, the warning reads: “You will be on maintenance until your disease progresses or you die.” I suggested to the Principle Investigator that kind of warning wasn’t going to attract too many people to their trial! MYELOMA CROWD: You say that you were a runner pre-myeloma diagnosis and we've heard through the grapevine that you took up running again after your stem cell transplant. Tell us how a myeloma survivor who has undergone that kind of intensive treatment plus maintenance therapy does something as physically aggressive and challenging as running? Where did you find the energy? See the adjective I used in your first question. I am stubborn. I walked the equivalent of a marathon while I was undergoing transplant at City of Hope. I was discharged on October 25, 2011. When I got home, I walked 1-1/4 miles near home the very next day and ran that same route the day after that (just two days after my hospital release!), though my run was very very slow. I’m 66 years old (67 next month), but have five children in various stages of college. EVERY parent reading this knows that when your children need something, how you feel really doesn’t matter. Somehow it gets done. Four years ago, post transplant, I knew I had to get back to being a parent. That is how I originally found the motivation. And running for me is as much a part of me being me, as brushing my teeth. MYELOMA CROWD: How often do you run per week and per day? I run seven days a week. At this point sometimes both morning and evening (but I am trying to get in good enough condition to successfully run the the LA Marathon February 14, 2016). MYELOMA CROWD: How did you work your way up running that distance? I have come back from injuries in the past and was determined to run, so I came back gradually as I previously had from any injury. The second week home from stem cell transplant, I ran twice. The third week, I ran three times, and so on... On November 23, 2011 I began my current schedule of running every day. I added distance slowly. OK some days, I don’t feel like running. I’ll do 1-1/2 miles. Other days or when really training for a race, I’ll go longer and/or harder. I did 8.8 miles the Sunday before flying out to the Association of Hematology convention a few weeks ago in Orlando. Frequently I don’t have “the energy” to run hard, so when that happens, I go slow. The hard part now is really accepting “how slow” I run some days. MYELOMA CROWD: What other workouts or physical activities do you love? I can’t ski anymore (my knees just won’t take it for more than a couple of bunny runs). I love gardening. I’ve been deep sea fishing with my sons a couple of times since my transplant. I’m working slowly on fixing up the house to sell (sometime in the next couple of years). MYELOMA CROWD: What about fatigue or physical pain. Do you have any and how do you work through it? Fatigue? What’s that? Oh yeah, "the new normal." I push myself to a standing position and lower myself into seats. Revlimid I believe is also affecting my balance so I’m careful. Physical pain? Not so much beyond severe peripheral neuropathy in my feet. I have numbnexx when I sit with my feet up. The real pain is in my toes and balls of my feet, especially late in longer runs. Recently I developed arthritis in my neck and a badly pinched nerve in my right shoulder, which really hurts when I am in the wrong position. I take Tylenol when that keeps me awake. After couple of marathons that I ran some 30 years ago, I lost all ten toenails due to blisters under the nails. But they grew back and I recovered. I learned then, that I could finish what I had started even with some pain. With regards to running now, I ask myself one question: “Will running today make it worse?” If I can honestly answer that question, “yes” I’ll give myself a pass. If not, I go. The neck and nerve seem to feel better after the workout for example. MYELOMA CROWD: What else do you do for fun post myeloma diagnosis? I read, watch too many movies, work as a “First Contact” for LLS, with Multiple Myeloma Journey Partners and try to get online to help others who are living with multiple myeloma. MYELOMA CROWD: What tips do you have for others on how to find a new life post myeloma? The biggest tip I have is to accept that you are sick. Accept that you have cancer. And then decide what your current condition allows you to do that is important to you. Specifically, I am on Revlimid, which causes (among other things) diarrhea. I control that with a Lomotil in the morning, a couple of ant-acids every time I eat anything, and another Lomotil if it still gets out of hand. That means I carry those with me at work, when driving to work or traveling. I know where the bushes are on all my runs (and “yes” I’ve had to use them sometimes). My wife (and caregiver) gets worn down by being the mother of five and caring for me. I try to give her a break by doing something, anything when I can take on some task. Most days, I can’t do much, but I’ll do what I can. MYELOMA CROWD: Do you work now? How much time off from work did you take for treatment? I work full time (which really means something north of 40 hours each week). I went on disability in late September 2011 and returned to work (from home) after Thanksgiving 2011. I was back in the office the first week of January 2012. I usually go into our staff lounge and sack out on a couch for my lunch hour. My work is with computer systems and communicating with faculty, staff and students when they have problems with my systems. So I can sit, type and be on the phone as opposed to physical manual labor. I drive a ten seat carpool van to and from home to work daily (50+ miles each way) as well on Southern California freeways during rush hour. MYELOMA CROWD: Do you have any myeloma side effects now? If so how do you work through them? My running previous to developing the myeloma diagnosis caused my bones to be very dense. So my initial symptom was severe anemia. Literally by late November 2015 , my cbc was the first time since onset that my HBC was within normal (although just, and in the low range for a runner). Fatigue and diarrhea are the big side effects. I also have a continuously runny nose, my scalp has developed some patchy pealing thing, and my fingernails crack. Again, I am stubborn and just go slowly through whatever. MYELOMA CROWD: How about mentally... how did you, and DO you cope with your diagnosis? Denial! No, seriously just living causes enough distraction. One of my children is currently studying abroad but let us know that to secure her dorm room next fall, she needed $700 - next week. My wife bounced her chin off a VW steering wheel years before we met. She has deep cracks in a number of teeth, another one of which fractured around Thanksgiving. It would need an implant but they don’t do implants in adjacent teeth (yes one those next to this was already done), so something else expensive (and unbudgeted) will need to be done so she doesn’t walk around with a gaping hole in her smile. Her car is dying and needs to be replaced. But hey, I’ve got cancer so if I die, I’ll die in debt. Maybe this is gallows humor rather than denial. Here’s a tip seriously about money: At our age, I went into Social Security, retired and then told them to suspend my payments. This means I can keep working, earning and adding to the eventual payout. BUT my wife immediately can begin drawing spousal benefits. MYELOMA CROWD: What limitations, if any, do you have since diagnosis? How do you work through them? Balance from the Revlimid is one limitation I have. I am very careful on ladders, like when changing a light bulb and have pretty much avoided climbing higher ones to trim tress around the house. I lack stamina, which means that I take naps and go to bed at night much earlier than previously. I lack patience. I have since sat in a meeting where some utter nonsense was proposed. My response was, “I have cancer and I don’t have time for this.” I then excused myself and walked out (by the way, the nonsensical proposal was rejected in my absence). Seriously though, I am also not as patient with many others about much less than I would have been previously. MYELOMA CROWD: What is the coolest thing you've done since myeloma diagnosis? And what are you most proud of accomplishing since diagnosis? I’d say the coolest thing I’ve done since diagnosis was a trip to Ireland and England that my wife and I just returned from. I planned it around various tests and medication schedules, and we did nearly everything that we’d planned (from the Cliffs of Moher in Ireland to Stonehenge in England). We played tourists and enjoyed ourselves. My youngest son is trying to get Mary and I to take a parachute jump (she’s got extremely cold feet at this point, but we’ll go together if and when it happens). The things I’m proud of since diagnosis are all over the place. There was a major work project I identified that needed to be done. It took two years to complete to prevent a disaster at work if something bad happened at a vendor site. Well, that something happened about 3 weeks after we finished. Two of my children graduated from high school and started college. I’ve run two half marathons, a couple of 10Ks and several 5Ks since diagnosis and my every day runs will hit 1500 on December 31, 2015. My oldest boy got married. I’ve tried to steer our finances onto a path where my wife won’t be left penniless should the myeloma take me. I believe I’ve helped some other folk with myeloma, either through Facebook or the MMJP program. Actually, in re-reading some of what I’ve written here, I’d say my proudest accomplishment is that I no longer give lip service to the world around me. I care more deeply about the political and environmental issues out there and thus have taken the time to act upon some. I have learned to enjoy the sunsets and the hummingbirds in our backyard. I make a special effort to encourage each of my family by telling them that I love them and how and why I am proud of them.