As I prepare to join my 30 teammates – including 7 myeloma patients -next week in Vermont for our 300+ mile ride, I’m mindful of how many myeloma patients are having a tough time. I am one of the lucky ones. This is my myeloma story.
It was 2003. I’m cruising along with family, career and all the trimmings. After a routine physical, my brilliant physician, Dr Dean Dimmitt, says there are some labs I’d like to repeat. They were all normal six months ago, but two days later he tells me he thinks I have Multiple Myeloma and since I was on staff at BUMC, he fast-tracked me through all the diagnostic tests, including my first bone marrow aspiration from my hip (I’ve had about 18 of them now, not so bad after the first few since I get sedation now). Yup, you have MM, it’s fairly advanced in the past six months, although I never had any of the classic symptoms like lower back pain due to vertebral compression fractures, severe fatigue, etc.
I had just finished a good year of group cycling with many long rides of 100 miles. I had to get back to work, my residents were staffing a surgery clinic and I had to be there. I have always been in good physical condition, having been involved in may competitive sports my whole life. No smoking, little alcohol. I was started on 200 mg of thalidomide–that was a shock, it felt like I had just got off a non-stop flight from China at DFW. All this is one week! I started drinking high octane coffee for the first time in my life just to bring me up to somewhat normal. I had to function, as I was the director of a postgraduate residency program at the dental school.
This regimen continued for about 8 months. I kept my normal schedule of working with my residents in classroom and clinic, traveling to speak, but I only worked out at home. Didn’t feel like it, but I was determined to make my bone marrow make some good cells, too, so I daily I would get on my own elliptical trainer and burn 1000 calories. I was mad about this situation. Finally, my malignant cells fell to a better level (marker called the m-spike for monoclonal antibodies), so I was referred to the Bone Marrow Transplantation clinic at Sammons, where I first met my new doctor for the next steps, Dr Brian Berryman. He completely explained what was going on and we built great rapport from there on. He started scheduling all the steps leading up to a bone marrow transplant. Ports placed in the operating room. Lots of nasty shots of Nupagen to stimulate your hemopoetic marrow to make stem cells, then apheresis for two days to gather all the stem cells from the blood stream to use for transplant, since the MM transplant procedure I was to have was using my own stem cells. There are advantages and disadvantages to this: the chance of Graft vs Host Disease complications are minimized, but you automatically autoinnoculate yourself again. MM always likes to come back, it always lurks.
Then I got to spend three weeks in a private isolated room where only certain people could enter, and only with masks and gloves, since they use meds to wipe out your bone marrow before the transplant. White cells go to zero, platelets to about 16,000 and red cells to severe anemia. I wasn’t happy about the timing, because it was August and I was in the hospital while my favorite bike race, the Hotter N Hell Hundred, was going on in Wichita Falls. Then they shoot your own stem cells into your ports and the waiting begins to see if they set up shop in your bone marrow and start making normal cells again. After about two weeks of wondering if it ever work, all of a sudden, some white cells start to appear, and in a few days, they are at a level where the doctors say you can go home.
I didn’t want to leave the hospital, because there are GERMS out there! So I went home and just sat and stared into space for weeks. My wife said she would leave me on the couch, go to work, come home and I hadn’t moved! Well, after a while, my head started to clear and I eventually went back to work and started to exercise again. My first short bicycle ride with my club almost killed me–I walked in the house and collapsed on the couch and slept soundly for hours. I stuck with it, got my drive back, and in exactly one year, completed the 102 mile Hotter N Hell Hundred bike ride in 4 hours 45minutes. I was in complete remission and felt great again–I was amazed I was still able to do that after being at the absolute rock bottom.
After about 5 years of complete remission, my M-spike started to make an appearance again, as it predictably does. Then Dr Berryman started me on a new treatment that had just come out, one that just about every myeloma patient takes today.. I still take this drug 3 weeks out of the month today, and I function completely normally with minimal side effects. Living with Multiple Myeloma, that’s what all the patients do, they learn to manage the side effects.. Some of those impact the mouth and teeth, and can even be severs, so as a dentist, I have come to specialize in managing myeloma patients .
Dr Berryman and I began a doctor/patient relationship, but soon, with my involvement as a dentist with so many of his patients, we became and remain colleagues. Now we are good friends. I tell him they put me through all this just to make the statistics of the hospital look good, as I am14 years post-transplant. I speak to support groups and do many things with the Multiple Myeloma Research Foundation, which is an exemplary and efficient entity that has fast-tracked multiple new medications in the past few years and is moving quickly to help patients with MM.
I have done several big fundraising activities for the MMRF, including them climbing Mount Kilimanjaro in Africa (with Dr Berryman as my tent-mate) as part of the Moving Mountains for Multiple Myeloma program. I rode my bike 3400 miles across the USA with a team of six riders in 2017 as the inaugural Road to Victories team. Last summer we rode from London to Paris (Dr. Berryman joined that team too) .
I have been blessed with the support of my family, friends and many people I don’t even know who support our research fund raising activities. I am often asked to speak to support groups, because not only do I talk the talk, but I prove to them I have walked the walk, and we are all in it together. I then tell them that if they have to pick a cancer to get, Multiple Myeloma is the one! Why? because there is so much focus on multiple myeloma and there have been 11 new drugs that have come to market in the past dozen years. I am very fortunate to be in the state of health that I am in, I am very active as I always have been. I am convinced that my lifelong level of exercise and fitness along with my perpetually positive attitude have carried me this far, and I am confident I’ll be okay for even longer, and I’m 73 years old. Let’s ride!
You can support the MMRF via my ride here: https://endurance.themmrf.org/R2VVermont/ChuckWakefield