Why multiple myeloma will never slow me down
Picture this: I’m cruising along with family, career and all the trimmings. At a routine physical, my doctor says there are some labs he’d like to repeat. They were all normal six months ago, but in two days, he tells me he thinks I have multiple myeloma.
Cue all the diagnostic tests you can think of and then the diagnosis: “Yup, you have multiple myeloma, and it’s fairly advanced.”
Shocked is an understatement — until just a few days ago, I had thought I was healthy. I never had any of the classic symptoms, like lower back pain or severe fatigue. In fact, I was feeling pretty good. I had just finished a good year of group cycling with many long rides of 100 miles. I have always been in good physical condition, I don’t smoke and I drink little alcohol. As a dentist, I know taking care of my health is important.
Yet, here I was, staring into the face of multiple myeloma. But I didn’t let the news keep me down for long. My next thought: I have to get back to work. My dental residents were staffing a surgery clinic and I had to be there.
That positivity and determination would carry me throughout the rest of my cancer journey.
My anger at cancer became my motivation
The first step in my treatment was a round of thalidomide, a form of targeted chemotherapy to knock out the cancer cells to as low a number as possible. The chemo was a shock to my system. It felt like I had just gotten off a nonstop flight from China to DFW.
But I refused to let my life stop just because of cancer.
This regimen continued for about eight months. In the midst of chemotherapy, I kept my normal schedule of working with my dental residents in classroom and clinic, and traveling to speak as I often do on dental topics. At home, I focused my energy on working out. I didn’t feel like it, but I was determined to force my bone marrow to make some good cells, too. Every day, I would get on my own elliptical trainer and burn about 1000 calories.
Honestly, I was mad about this whole situation. I decided to fuel that anger into determination to “beat this thing,” as they say.
What it’s like to have a bone marrow transplant
Finally, my malignant cells dropped low enough and it was time for a bone marrow transplant, which would be my best shot at avoiding or delaying a relapse. Most people with multiple myeloma relapse at some point, but a bone marrow transplant can help keep the cancer at bay for longer.
A little background on bone marrow: It’s the soft, spongy tissue inside your bones that makes white blood cells, red blood cells and platelets. The goal of a bone marrow transplant is to replace your unhealthy stem cells with healthy stem cells. This can either be done using stem cells from a matched donor or using your own stem cells in what’s called an autologous transplant. The second option is the typical route for multiple myeloma because it reduces the risk of graft-versus-host disease, a common post-transplant complication.
A bone marrow transplant was my best bet, and I was ready to fight.
I was referred to the blood and marrow transplant program at Baylor University Medical Center, where I first met Dr. Brian Berryman. He walked me through all the next steps: surgery to place the ports in my chest vein, injections to stimulate my stem cell growth and then the process of harvesting the stem cells from my bloodstream. After all that came the really fun part in the hospital. First, a big dose of chemotherapy to basically eliminate all my bone marrow — and with it, my immune system.
I spent three weeks in a private isolated room where only certain people could enter, and only with masks and gloves. Then, my doctors injected my harvested stem cells into my ports, and the optimistic waiting period began.
Honestly, I was scared to leave the safety of the hospital and face the outside world with all its dangerous germs. But armed with new healthy cells, my body was ready.
After about three weeks of waiting and wondering if it would work, all of the sudden, some white blood cells started to appear! In a few days, they were at a level where the doctors said I could go home. Honestly, I was scared to leave the safety of the hospital and face the outside world with all its dangerous germs. But armed with new healthy cells, my body was ready.
I won’t lie — recovering after my bone marrow transplant took some time. 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. It was several weeks before I even felt like going on a walk.
But it wasn’t long before I was back at it and more motivated than ever. Having a bone marrow transplant was not easy, but I was grateful for it and the years of remission that followed.
Thriving in the face of multiple myeloma
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, collapsed on the couch and slept soundly for hours. But I stuck with it, got my drive back and in exactly one year, completed the 102-mile Hotter N Hell Hundred bike ride in four hours and 45 minutes.
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.
But I knew that multiple myeloma always likes to come back. It always lurks and surely enough, after about five years of complete remission, it started to make an appearance again, so Dr. Berryman started me on a new generation of chemotherapy. I still take a daily low grade of oral chemo to keep the disease at bay.
Today, I’m healthy, active and enjoying life — multiple myeloma can’t take that away from me. I won’t let it.
It’s now been 14 years since that bone marrow transplant. Back then, I had no idea how this disease would shape the rest of my life. I became passionate about supporting the Multiple Myeloma Research Foundation, an organization making a difference for patients like me facing this disease. I speak to support groups and do many fundraising activities. When I speak to support groups, I tell them that I’m proof that you can live and thrive with this disease. If they have to pick a cancer to get, multiple myeloma is the one; it may not be curable, but it is manageable.
My love of cycling has become my biggest weapon against this disease. Last year, I biked 3,400 miles across the U.S. with a team of six other riders supporting this cause. I have been blessed with the support of my doctors, family, friends and many people I don’t even know who believe in this cause too.
“My mother died before a lot of newer therapies were available. It is something that fuels me both personally and professionally.” – Dr. Brian Berryman
I’ve also been blessed by the ongoing support of Dr. Berryman, who was at first just my doctor, then my colleague as I consulted with him on dental problems his patients were facing. Now, we’re good friends. He shares my passion for bringing an end to this disease through research, inspired by his own mother’s battle with multiple myeloma.
Together, we’ve climbed Mt. Kilimanjaro in Africa and most recently, ridden from London to Paris in support of multiple myeloma research. It means a lot to me to have Dr. Berryman’s support, both as my doctor and my friend.
At 72-years-old and living with multiple myeloma, I know I am very fortunate to be in the state of health I am in.
Last year, I shared my story with D Magazine and talked about how exercise has impacted my cancer journey: “It’s very important to stay in shape, eat properly, get up and do things. It’s important to have an exercise program. We’re all blessed to be given this body and in my mind you don’t have a choice. It’s your responsibility to take care of it.”
I’m 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. Now, I’m gearing up for a bike ride next summer through Vermont up into Quebec. I’m excited for this and many more adventures.
This blog post was written by Chuck Wakefield, DDS, a multiple myeloma survivor and retired U.S. Army colonel.
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