My Cancer Journey
My Cancer Story Summarized
How do I summarize a five-year long journey with as many stomach-twisting turns as a rollercoaster? While at many times painful, the journey has also surprised me with its beauty and its gifts. So, as not to bore you, below I summarize the basic facts of my illness and treatment. If you want a more in-depth story, click the pages above. In addition, watch my blog posts as I post about what I have learned along the way.
Diagnosis at age 24
I was diagnosed in May 2012 with non-Hodgkin’s lymphoma, a type of blood cancer, at the age of twenty-four. There are over sixty types of lymphoma. My specific type of non-Hodgkin’s lymphoma is primary mediastinal diffuse large-B cell lymphoma. Basically, that name means that the lymphoma’s primary site in my body is the center chest, and the type of cancer cell is the B-cell lymphocytes (white blood cells).
The diagnosis was preceded by six months of worsening illness. I had low-grade fevers, night sweats, and weight loss, all classic symptoms of lymphoma. In addition, because of the location of the lymphoma mass (center chest and left lung), I had a severe cough, shortness of breath, shoulder and neck pain, and a high heart rate. By the time of diagnosis, the lymphoma mass was the size of an enlarged softball, destroying my left lung, cutting off my air, and stressing my heart. The medical field moved very slowly through it all. I was originally misdiagnosed with pneumonia and then small cell carcinoma (lung cancer). By the time I finally received the correct diagnosis and started treatment, I was dying.
Five Years of Treatment
The correct diagnosis and the correct chemotherapy turned that around very quickly. Lymphoma normally responds very well to treatment, and mine did. I did six months of chemotherapy in 2012. The chemo had very little negative effects on me. I handled it well, working full-time through most of my treatments. The chemo did not put me into remission but significantly decreased the size of the mass. So I settled into a watch and wait approach for the next year, with checkups and CT scans every three months.
2013 & 2014
A slight increase in tumor size in September 2013 sent me on a quest for a strict diet and supplement regimen. That held the lymphoma at bay for another six months until a CT scan in May 2014 revealed additional tumor growth. I started chemo in June, followed by high-dose chemo in August and an autologous stem cell transplant on August 21, 2014. That, in turn, was followed by twenty-three doses of radiation in October.
My remission lasted only five brief months. In February 2015, the lymphoma returned with a vengeance, causing coughing and illness much like the months before diagnosis in 2012. I began more chemo, a different type yet. However, this chemo was not aiming at cure like the previous ones had. This chemo would only hold the lymphoma at bay for some months. My options for treatment were dwindling. It appeared more and more likely this cancer would kill me.
In October 2015 I was forced to stop treatment, as I had reached the toxic dose limit for the one chemo drug I was taking. In addition, I was diagnosed that fall with restrictive lung disease. My lungs operate at about 55% capacity, due to lung scarring from the lymphoma, chemo, and radiation.
In January 2016, after a CT scan indicated more tumor growth, I started an experimental immunotherapy. I was delighted when it worked well to suppress the lymphoma and didn’t cause me any side effects. But once again, the cancer proved its stubbornness by more growth yet again in September.
I started another chemo regimen, once again, not a cure, only a delaying tactic. But it did get me well enough to consider one last treatment option: an allogeneic stem cell transplant using donor cells from a family member. My siblings were tested and my oldest sister was a perfect match! On February 13, 2017, I was admitted to the hospital for a three-week hospital stay of high-dose chemo followed by transplant day on February 21, my “new birthday.” The transplant was successful in that I engrafted and my blood cell counts recovered quickly.
In the words of one of my doctors, I went to purgatory and back during the following three months. It felt like I had everything wrong with me I possibly could: croup, JC/BK virus, ocular GVHD, hearing difficulties, and pneumonia. For a while, I was nearly blind and deaf. I was in and out of the hospital, spending two of the last four months hospitalized. There were times that I wondered why I had ever agreed to do an allogeneic transplant. An allo transplant is largely a gamble: 30% of patients survive. The rest die either from a return of the cancer or complications. For a bit, it looked iffy for me. But I pulled through.
Current Health Status
All that is behind me now. I am now six weeks past my last hospital stay. Each week sees me gain a little more strength, a little more energy. The recovery period is long, however; most say it takes a year to recover basically normal energy levels. I take anti-rejection medication and probably will for a while. I’m on oxygen, due to how the pneumonia affected my already compromised lungs. Hopefully, my lungs will heal from the pneumonia and I can eventually live without supplemental oxygen. The last 4 months were a hellish medical journey, but now that I’m on this side of it, I can say it was worth it. I do not regret my choice to go through an allogeneic stem cell transplant. I will continue posting updates on my journey.