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May 19-25

Week of May 19-25

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I've been holding off on providing an update after my PET scan as I was waiting on answers to a few questions that were delayed due to the holiday weekend. Unfortunately the results of my PET scan showed continued progression of the known spots, as well as a few new areas of disease that were not seen on my most recent CT. The left upper lung nodule increased in size, as did the lymph node in the mediastinum. It also showed significant uptake (an area that lights up brightly due to rapid metabolization of the radiologic glucose tracer that is injected into my body) of another node in the mediastinum (further left and closer to the aorta) as well as a left supraclavicular lymph node (near my collarbone). In the past it was believed that disease drained from the lungs into the mediastinal nodes, so systemic lymphatic involvement wasn't a concern. However, the left supraclavicular node drains from the thoracic lymphatic system, meaning there actually is systemic involvement. The plan is to treat ALL these areas with high-dose radiation, and then to treat the surrounding nodes with moderate dose radiation. My radiation oncologist believes there is likely microscope disease in these areas that can't be detected on imaging yet, but this will be our last chance to radiate this area before it is maxed out. Unfortunately there are no good surgical options to remove disease in this area. I will start my radiation treatment next Friday and will go every other day for 5 rounds. The biggest side effect will be fatigue, and possibly some pain and inflammation to the treatment areas. There are some other rare, and rather scary, possible side effects that we will pray won't happen. After this course of radiation, if spots keep popping up, I will be enrolled in a clinical trial specific to a rare gene mutation found in my cancer. It's early in the trial, but so far it's showing good success.
I always try to be really honest when I share these updates, and I can say that the last month of recovery following surgery, and now leading up to radiation, has been really tough for me. There have been a lot of ups and downs over these last 5 years, but I've been able to dig deep and find mental strength and fortitude on the days my body was weak. On more than one occasion I pushed myself physically to get back into shape so I could return to work so I feel like I should be able to do that again now. I've been knocked down so many times in the last year that all I'm left with is an overwhelming sense of defeat. I'm not giving up, but mentally I'm not strong right now. I want to go back to work, I want to keep living and enjoying life, but I need to find that strength and determination to push forward and to start over. Please send prayers that I can find it again. 

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