To put my story into context, you need to know that I had been a personal trainer and a fitness instructor for many years. So I know my body better than most. I ate very healthily for the most part, and I was teaching a minimum of six high-intensity classes per week. I was also 
involved in all sorts of outdoor activities such as whitewater rafting, hiking and even zip lining.
In late October 2013, while teaching a Zumba class, I began having trouble breathing. This was followed by a very sharp debilitating pain underneath my left rib cage. Everything I tried to eat my body would reject. This continued for several months. It became very difficult to teach classes or even function and continue with normal activities of daily living. Eventually, my weight dropped to 102 pounds, and if you knew me, I really didn’t have any extra weight to drop. The doctors had no clue what was wrong with me, so I endured months of pain and uncertainty.
Around May 2014, at the age of 54, I walked into my PCP’s office and said, “I think I’m dying, and I am troubled that you just don’t know what is causing my symptoms.” I endured several additional tests to determine the source of my discomfort, to no avail. I vividly remember the day I finally had a diagnosis. The phone call went something like, “You have a huge mass in your chest, and several other areas show masses. It could be several things and it could indicate CANCER.” So many thoughts crossed my mind, but it was like everything at that moment was moving in slow motion. How could this happen to me? I was a personal trainer and a fitness freak; I ate very clean and healthy; I worked out every day. I was screaming from the inside out. I was scared to death, but nothing could prepare me for what was to come.
I had a biopsy of the tissue mass done later that month. In June of 2014, I was admitted into the hospital because I could not breathe. The doctors still could not determine what type of cancer it was. After all the testing was completed, suspicion of the cause was narrowed down to one of three blood cancers: CLL, WM, or some form of leukemia. Eventually, a conclusive diagnosis of WM emerged. At that moment my long, exhausting, extremely scary journey began.
I started treatment in my home state of Virginia, receiving a combination therapy of Velcade and Rituxan. The Velcade injections were extremely painful, and I had a severe allergic reaction to them. WM being such a rare form of blood cancer, my local doctors really didn’t know how to treat me. I decided to research WM, and was determined to acquire sufficient knowledge about WM so that I could become my own advocate. My first oncologist suggested a consult for a bone marrow transplant. At that time, I was unaware that having a bone marrow transplant for WM was not normal protocol. But my cancer was fast-growing and very aggressive, so I went to Johns Hopkins in Maryland for a second opinion. It was confirmed there that at that time I was not a candidate for a transplant.
I pursued other medical opinions for dealing with my condition. And, in 2015, I had to leave my home, my family and my friends to save my life. I went to the Mayo Clinic in Jacksonville, Florida, where I underwent treatment that began with another round of Rituxan infusions. Unfortunately, though I had the full course of treatment, it was not successful in slowing down the progress of my WM.
After the Rituxan, I was put onto a regimen of Imbruvica to determine if it would be effective in treating my disease. Soon after beginning to take the pills, I experienced almost every side effect that is normally associated with Imbruvica therapy. Worse still, I did not have as strong a response as was hoped for. My doctor at the Mayo Clinic said, “This is a very stubborn and aggressive cancer, so I need to refer you to our bone marrow transplant team.”
Upon reviewing my case and administering further tests, the transplant team determined that I should have autologous transplant therapy, which means they harvest your own bone marrow cells for transplant. The actual process of harvesting your own cells is called apheresis. It starts with very painful injections to produce more bone marrow for extraction. Once enough cells have been collected, they use a special machine to separate the stem cells for implantation at a later date. I spent twenty-eight days in isolation while I started the bone marrow transplant process.
After a massive amount of chemotherapy, my own stem cells were infused back into my body. My “new birthday” became June 8th, 2016! On June 30th, 2016, I was released from the hospital. But less than twelve hours later, I suffered a massive heart attack. On July 1st, 2016, a stent was inserted in an artery in the bottom portion of my heart to restore blood flow.
About two months after the stem cell transplant, a very large, painful growth appeared on my left leg. It turns out that after the transplant, my cells decided to work overtime – my new cells created a new bone in my left quadricep muscle. The medical term for this is myositis ossificans. It is a very rare condition. After almost two years in Jacksonville, Florida for medical care, with all of the treatments and complications, I decided to return to my home in Virginia. My thought process at the time was, ”I needed my family and friends.”
In early fall of 2017, I developed a bacterial infection. I had a fever of 103.8, and I couldn’t move my left side. My husband works on a tanker ship. And by the time he came home three days later, I was basically paralyzed, and blind in my left eye. The pain was extremely intense, to say the least. My husband rushed me to the emergency room where an MRI revealed a golf-ball-sized abscess on the right side of my brain that was pressing my brain toward the left side of my head. I had to be transported in an ambulance to a hospital two hours away for treatment. When I arrived at that hospital’s emergency room, I had a massive seizure. I endured two brain surgeries within a two-week period. I remained hospitalized from October to December of 2017, following which I had to re-learn to walk, talk, read, drive, cook, and perform simple tasks like tying my shoes, brushing my teeth and other basic ADL’s (Activities of Daily Living) all over again.
In addition, all of these conditions and therapies have exacerbated my severely compromised immune system. I must endure periodic IVIG infusions just to avoid infections. And, my frequent routine visits to my oncologist and for therapy generally require me to travel one-to-two hours in each direction. At present, I am waiting on my immune system to kick back in. My most recent PET scan showed no tumors anywhere in my body.
To be sure, I have suffered an extensive series of cascading medical challenges related to my WM and its treatment during the last few years, making this story atypical of most WMers’ experience. That said, I want the reader to know that notwithstanding such multiple hardships, with the proper attitude, commitment and support, one can maintain a full and rewarding lifestyle. How is this done? Let me share a few key lessons I have learned while navigating this complex medical journey.
First, I believe that staying positive and being one’s own advocate contributes to one’s own recovery. Be the initiator and push the limits. Manage and direct your physical exercise and therapy, if that is part of your recovery program. Gather your community to join you in activities that test your limits – for instance, I have greatly enjoyed, and benefited from, organizing and participating in such activities as the American Cancer Society’s “Relay for Life,” and similar “give-back” activities.
Second, recognize that knowledge is power. Educate yourself on your disease and its treatments. Then round up the most amazing medical support team that you can, knowing that their actions will be a key pillar for the healing you are committed to doing. Do all you can to ensure that the doctors and nurses on whom your care and survival will depend are in the right places at the right time, and that you are as well.
Third – and this one is highly personal – I believe I was greatly assisted by my strong faith, supplemented by a tremendous support system of family and friends whom I loved, and who I know loved and cared about me. None of us gets through something like this on our own.
And finally, I would like to express the reason why I found it compelling, to put this medical odyssey into writing for a larger audience – despite how painful it has been for me to recount it. As I have expressed, a WMer’s well-being is the result of the efforts of many diverse actors working together. I have been fortunate in having such a strong cast of supporters. And I want to be that kind of an actor for others. So, it is my hope – and it will be a great comfort for me to find – that my story of struggle has inspired and given resilience to others facing similar complex health challenges, or at the very least has reinforced hopefulness – whatever the prognosis and the challenges – in the hearts of these patients, their families, and their support communities. You, we, will get through this!
Deborah Barksdale
Stuarts Draft, Virginia