I was diagnosed with Non-Hodgkin’s Lymphoma, in early September 2012, at 34 years old. Other than severe breathing problems I didn’t have additional symptoms besides generally not feeling well. In my gut I knew I was sick….I can’t explain the feeling….I just knew something was seriously wrong but never would have guessed I was that sick. As it turns out, I had a tumor growing at the base of my esophagus that had been there about 9 months. It had grown so big it was leaning on my left lung and causing it to fill up with fluid which is why I couldn’t breathe.
Immediately I was hospitalized and they did a thoracentesis and took 2 liters of fluid out of that lung. They did a multitude of other tests, put together an action plan and released me after several days. I started R-CHOP chemo which is supposed to be 6 sessions. After the first 2 the tumor started to shrink but some “rogue cells” took up residence in my upper left lung and started multiplying very quickly while on chemo. I was transferred to a specialist in a different hospital system and put on an experimental chemo regime. This new drug made the cancer grow even faster and my pea sized rogue cells went to the size of a grapefruit in weeks. They stopped the chemo after I’d had about 10 rounds and did radiation to the upper left lung. This worked at killing the cancer cells. They then gave me Bexxar therapy which is live internal radiation.
Within a few short weeks they hospitalized me again, gave me 5 days of a very intense chemo regime to completely kill my immune system and then gave me a stem cell transplant of my brother’s cells. Then we started the post-transplant journey of seeing how my body would respond and what my immune system would do. I responded fairly well through the transplant, however, within a month or two, I started having severe stomach pain knew something was wrong. My lymphoma had come back in a 6 centimeter crater in my stomach….post-transplant!
The odds of that even happening are almost a statistical impossibility.
It would be more likely for my brother to have randomly gotten lymphoma after my transplant than for me to get it again….supposedly. They didn’t even bother with chemo since my body seems to feed off of it. They did stomach radiation (maybe the worst thing I’ve been through!) in the fundi region of my stomach and also immediately started giving me “mini” transplants of my brother’s cells.
About February of 2014 my body stopped making cancer cells and by God’s grace, as far as we know right now, I still don’t have any growing. I truly believe this is the work of God. My body just stopped making cancer cells. My oncology specialist has no idea why. He has no probability he can give me of being in remission or even of survival. I have defied every text book case. He said he’s just making up my plan of treatment as he goes along as there are no other studies or cases to reference. He’s stumped.
From about April 2014 through today I have been struggling with graph vs. host disease (GVHD). It’s basically a transplant rejection from my brother’s bone marrow. Remember that after my transplant, my cancer came back so I had 6 additional “mini” transplants and from that my immune system kicked into high gear. My new stem cells suddenly woke up so to speak and realized they were in the wrong body and started attacking my organs like they were foreign invaders. It took a while to figure out what was happening but after some accidental medicine mishaps and an insistence on listening to what my body was telling me, I was able to piece it together. There are 3 basic categories of GVHD; mild, moderate, and severe. Those with severe don’t have a great prognosis of living past 2 years. Those with mild can live with it for 40 years or more with just lifestyle irritants. Those with moderate constantly fight the battle of getting it under control. I was at moderate and quickly moving towards severe each month.
Long term planning for me became the next 4 weeks before my bloodwork was drawn again. One of my doctors told me several months ago if we couldn’t get this under control soon it would be time for me to quit my job and live my bucket list. If my numbers got a lot worse, then it signaled not only the distress my body was going through but also meant that my symptoms were worsening and becoming more unmanageable and eventually organ failure would follow. The major areas affected for me have been my eyes, skin, liver, and lungs. Again through God’s grace and many changes I’ve made to my life for the better, my GVHD today is in the mild category. Stability is not guaranteed but for now I celebrate life.
I would say today I live a rich, full, healthy, and very happy life. I have an amazing family and wonderful friends. I have a job that I love. I live in a place that I love. I spend my free time pursuing the study of health on a cellular level and volunteering in my community in ways that bring so much joy. I could not be more grateful…..for my life, for my family, for my health, for my work, for my friends, for those I love and those I don’t know I love just yet. I am truly blessed! I don’t know if it will be God’s will for me to stay out of cancer and continue to heal, I certainly pray so, but I know that for today, for right now, it’s the path He is leading me down and I am so grateful, so humbled, and so eager to journey down this road.