My journey with Castleman Disease started in March of 2015. I had gotten into a snowmobile accident, and had banged my ribs pretty good on the handle bars. After many of times reluctantly being told to go get an x-ray, I took myself in. With no broken ribs, only badly bruised, my doctor sent me with a prescription for the pain and on my way. Before I could get into the store to pick up my prescription, my doctor had called and said I needed to come back, as they found a mass in my lungs while reading the x-ray. The mass was pushing up against my pulmonary artery, and was unresectable without removing my lung in it's entire. Since this day, I have had a roller coaster of cat scans, pet scans, procedures, blood draws, surgeries, and number of inconclusive results. After hearing Lung cancer and Lymphoma both thrown around as possibilities, and after my final surgery, with a chest tube coming out of my right lung, I was relieved to hear the final diagnosed of Castlemans Disease.
Unfortunately, this diagnosis was no better, and I was disappointed to realize that finally with a diagnosis came very few answers. I had a great team of doctors around me, all very confused and with different outlooks of what our next steps would be. After recovering from the last surgery, I then started a chemotherapy. I had long 6 hour unnerving treatments every Monday for four weeks, which in fact was shrinking the mass in my lung. But what were our next steps??? Again I had a great team of doctors around me - not sure what to do as the doctors were split down the middle of what to do. At that point I decided to go to the Huntsman Cancer Center in Salt Lake City Utah to see another oncologist/hematologist. They were adamant about radiating the area, and trying to kill the mass that was inside me.
With that being said, the doctors and I decided i could receive the radiation at home rather then in Salt Lake, as I would be mentally healthier at home and in my own environment. I then underwent 28 rounds of radiation to my chest from the front and back side. The treatment went right through my esophagus so needless to say eating was very difficult, which resulted in having to blend all of my food. After these treatments, I was told to wait 6 months before we could rescan to see how everything was looking. During that time, I put blinders up per se, to the disease itself, and as I got closer to the appointment, I happened to get an email from the CDCN. With the information from Dr Fajgenbaum, and the research of the disease, I am trying to stay optimistic, but the fear of flare ups, and what else could come of it, has me on edge. I decided with the help of friends and family, we will be dedicated to helping the next person whom might have the same struggles that I have had. We will devote ourselves to raising money for the CDCN to help advance research and awareness for preventing and curing this horrible disease.