To Get Up To Speed

Just to catch everyone up to date and what got me to this point I'll give a quick summary. Sorry if it's a little long and boring. The rest of the entries will be much shorter and I'll try and make them much more entertaining.....About two months ago I went to my doctor to check out some swollen lymph nodes I had and a little fatigue I was feeling. He did some blood work and after it came back negative for an infection he had me go get a CAT Scan. Most doctors would have just said I was fine, come back in 6 months, but this shows how important it is to have a smart, thorough family doctor that you can trust. The CAT Scan came back showing swollen glands all over my head and neck. Next step was a PET Scan and Biopsy. A PET Scan shows where there's any "activity" in your body. This could be merely an infection or it could be cancer. My entire lymphatic system lit up with activity and my spleen was enlarged, still not proof of lymphoma, but it was starting to look like it. Next was the biopsy where they took a lymph node from my groin. The biopsy came back negative for cancer. Great news!!! Then an Oncologist took some blood and those results came back positive for Follicular Non-Hodgkins Lymphoma. Crap. I sent all that info over to Sloan-Kettering (The #2 Cancer Center in the US) and they called back and said it's probably not Lymphoma. Great News!!! Then I got a secondary report back from the biopsy which said they actually did find Follicular Lymphoma present in the biopsy. Crap. I get an appointment at Sloan with pretty much the world's leading Lymphoma Specialist, Dr. Zelenetz. They said their results came back inconclusive, all the information they've gotten so far is kind of useless, and they'd have to get their own biopsy and also a bone marrow biopsy. I'll do a separate blog on what a bone marrow biopsy is like. Those results just came back Tuesday and were positive for Marginal Zone Lymphoma. It's a Lymphoma that's very very similar to the one they originally thought I had but there will only be a few hundred people in my age, gender demographic that will get Marginal Zone Lymphoma this year, so it's very rare. I'll be getting another biopsy on Monday which will hopefully give them all the info they need and they said there's a chance I may need to have my spleen removed because it's so enlarged and would give them much more information. October 4th will be when I find out all results and whether or not I'm going on Chemo. That should catch everyone up to date. Some important things that I learned so far: 1) Have a great family doctor 2) Get all surgeries done at the best possible hospital, even if it means waiting a few more weeks. 3) Get the best possible care from the smartest people. They told me at Sloan that 18% of cases they receive are misdiagnosed. That means 1 out of 5 people they see either think they have cancer and don't or think they don't have cancer and do. Crazy. Sorry this was boring......