It all started in February of 2010. I was a 40-year-old single mother of two boys living in Massachusetts, and never expected my life would change forever. One day, I found a lump in my groin area. I didn’t think much of it, but as a precaution, I decided to see my primary care doctor. My doctor was not particularly alarmed, but she suggested I schedule an ultrasound to take a better look. I went for my ultrasound in March and scheduled my appointment early in the morning before work. After my ultrasound, I went to the gynecologist’s office where I worked, and immediately received a call from my primary care doctor. I knew this could not be a good sign. She urged me to see my GYN as soon as possible and told me I would likely need to have surgery. Luckily, the GYN I worked for was one of the best laparoscopic surgeons around, so I had my doctor send over my ultrasound report for him to review. He confirmed I would need surgery and referred me to a GYN oncologist in Boston.
The following week my mom and I went to Boston for me to have my surgery. As I woke up out of the anesthesia, I saw my doctor at my bedside. Little did I know, he was waiting to tell me I had Hodgkin lymphoma. I was overwhelmed and in shock. How could I tell my family I was just diagnosed with cancer? How could I have the same cancer that my grandmother had passed away from years prior? The doctor told me to follow-up with one of his colleagues who specialized in lymphoma. I decided to wait to tell my family until I spoke with the specialist. While it was difficult to keep it to myself for a week, I wanted more information before I worried them. My mom stayed with me after my surgery to help with the boys, housework, and our husky Mya – she was absolutely my rock.
I met with the specialist the next week and she told me the cancer was still in the early stages and she scheduled me to have a CT-scan to make sure the cancer had not spread. The CT results showed it hadn’t, and it appeared that the surgery had removed all signs of the lymphoma. For safe measure, my doctor scheduled me to have radiation in my groin area for the next three weeks. I was terrified for my first treatment but was pleasantly surprised that it wasn’t as bad as I expected. I attribute much of the ease of the process to my wonderful radiation team. They did everything they could to make the experience more tolerable, including playing music in the room to calm me down.
After my radiation treatments, I followed up with my oncologist every three months and had scans every six months. I was in the clear for almost a year and a half, and then I found a lump near my jaw. I immediately saw my oncologist who ordered me to have a needle biopsy. The results showed I now had a subtype of non-Hodgkin lymphoma called, follicular. This time around my treatment was a chemotherapy regimen of bendamustine and Rituxan, twice a month for six months. I was happy I did not lose my hair as a result of the chemo; however, I did experience my other side effects. Fatigue, nausea, extreme body aches – overall, I felt as if I had gotten run over by a train.
Six months of chemo and my scans were clear again. This is, only for a mere ten months, before my cancer returned for a third time. The lymphoma moved to my back and started pressing on the nerves close to my spinal cord causing me much pain. My oncologist recommended radiation, R-CHOP chemotherapy, and an autologous stem cell transplant. The process was just about as hard as I expected it to be. Firstly, most of the veins in my arms had collapsed making it hard to access them for chemo and forcing them to surgically insert a port into the right side of my chest. I received strong doses of chemo twice a day for four months prior to my autologous stem cell transplant.
On New Year’s Eve, I was admitted to the hospital to prep for my transplant. I received chemo for two and a half weeks prior to my transplant day, ‘day zero’. Much to my surprise, the transplant process only took an hour and caused me no significant discomfort. However, the days that followed proved to be extremely difficult. I was constantly weak, nauseous, and was overall exhausted. However, I tried my best to keep a positive attitude, and my friends and family were also helpful in lifting my spirits. One friend gave me different pairs of novelty socks to wear while I was admitted to the hospital – my favorite pair said, “I am strong.” I would post daily pictures on Facebook of my feet in a new pair of socks and provide updates on how I was doing. This also helped me feel less isolated throughout the process.
For the next year, I had monthly appointments with my oncologist, labs and pet scans. I swore to myself that cancer was behind me and that my body had endured enough. However, a little over a year later cancer once again showed its ugly head. When I heard the news, I wanted to cry and scream. This couldn’t be happening! Why me? I proceeded with chemotherapy twice daily for the next six months and halfway through my treatment my oncologist recommended I receive yet another stem cell transplant – this time an allogeneic one. I swore I couldn’t but my body through another transplant, especially so soon after my last one. However, my doctor reminded me that it could be worth the struggle and felt it might finally put me into remission for good. With the hopes of finally getting to put lymphoma behind me, I agreed to the allogeneic transplant.
My oncologist team reached out to Be the Match to see if anyone in their database was a match for me, and they found two potential donors, one of whom was a 100 percent match. Not ready emotionally to receive another transplant, I asked my doctors if I it would be ok to push it out a few months. Additionally, my boyfriend and I were getting ready to host our annual Lymphoma Research Foundation fundraiser, an all-American Hot rod cruise, that I did not want to miss. My doctors agreed to delay it but had me continue my monthly chemo treatments in the meantime.
Just days after our fundraiser I began pretesting for my allogenic transplant. I was scheduled to have my transplant on Halloween, and my doctors informed me I would be in the hospital for at least three weeks. Being that Halloween was one of my favorite holidays, my mom bought me Halloween pajamas and socks for infusion day, and I bought a witch’s hat to put onto my IV pole for decoration. The infusion process was similar to my first transplant; however, the recovery was much longer and harder. I experienced intense side effects, including extremely painful mouth sores. After two weeks in the hospital, I was able to go home, and after three months at home, I was finally able to go back to work part-time. Going back to work wasn’t easy – I was tired all the time and run down – but I wanted to try and get back to somewhat of a normal routine.
After my allogeneic stem cell transplant, I was determined to get in touch with the person who donated their stem cells to me so that I could express my immense gratitude. A year to the day after my transplant I signed forms allowing my donor to get in contact with me, and he thankfully agreed to do the same. I was so thankful to be able to reach out to him and thank him for what he had done. We ended up speaking frequently and becoming friends, and eventually, he and his family came to visit my family.
A little over a year later when the lymphoma showed up in my left shoulder, my doctors gave me three weeks of radiations – I was so happy to not have to get chemo. During this time, I also experienced graft vs. host disease. My donors’ cells were attacking the part of my body between my muscles and my skin, starting in my hands and moving down to my legs. It was both terrifying and painful and took nearly two weeks of medication for the pain to subside.
Now, a little over a year later, I have had two clean scans and I am back to enjoying life. While I know I am not 100 percent in the clear, I am just thankful I get to spend time with my boyfriend, family, and friends. Reflecting on my journey, ten years since my initial diagnosis, I am amazed by all the things I was able to endure and overcome. It is hard to take a moment and process everything you are going through while it is happening – but looking back now all, I can think is ‘wow, I made it through all of that and I am still here’. This experience has taught me that you never know how strong you are until being strong is the only choice you have. You must stay strong, have a positive attitude, lean on others for support, and BELIEVE you can kick cancers butt.