Back to Kansas (Again)

I'm not sure what they found in my bone marrow. I did ask the nurse when he called. He said "they found something but I'm not sure what, you'll have to talk to Katherine. I'm just calling to say we scheduled you for a surgical biopsy on Monday" He called on Thursday. He gave me the surgeons name- Patrick Jackson. I looked him up and he specializes in pancreatic cancer. That freaked me out but he does other surgeries too apparantly. Undergrad at Harvard, Med school at Columbia. Another super qualified doctor. So I called but his office said whoa on the surgery, they needed a consultation first. Marcel took me down last Wednesday, got straight in and they spent an hour with us. The first thing anyone at Georgetown always asks me is if I'm in pain. That is pretty nice. I'm not but I still like that they care to ask. This guy was good, straight forward and to the point but still very friendly and attentive. He actually dictated his report in front of me and Marcel which gave us another summary of what we had discussed and we knew exactly what he was telling the other doctors. He sends reports to everyone even my GYN and Allergist. He sent a report to Dr. Resta in Reston but he was happy to hear we were not planning on going back there. We all seem more comfortable to just do everything down in Georgetown for now. The consultation was positive but the news was very dissapointing to me. As far as he is concerned, I might as well be coming for my first appt. ever. Other than the fact that I have B-cell Non Hodgkens Lymphoma, we are back to the drawing board. They didn't get good enough information from Reston, and apparantly not enough from the bone fragment or marrow to type it any further. This means I really don't know for sure if it is slow growing (indolent) or fast and agressive. I feel confident that I have had this since I had pneumonia a couple of years ago, or at least for the last two summers. My oncologist saw the mosquito bite scars on my legs the first appt and immediately said that I was one of the 1% who get this ridiculous sensitivity to bug bites. That has happened the last two summers. If that is the case than it isn't all that bad that I am already at stage IV.
So next: I get another biopsy from a lymph node under my arm. Dr. Jackson the surgeon would like to do another needle biopsy because he can not feel or manually find the swollen lymph nodes. He would have to make a five or six incision under my arm to dig around for one. The radiologist can do it with ultrasound. Maybe they can get a better one than Reston did. If Dr. Cheson, my oncologist does not agree to this, than I will have to go to radiology and have them stick a wire into the lymph node and leave it sticking out of me, take me to surgery and Dr. Jackson will use that as a landmark. At this point I'm considering a tatoo instead but I'm not sure they will do that. Either way, I'm once again going to have to wait for a definitive answer if there is one and just deal. I have a feeling that I will have to get used to this. It looks like I am destined to spend a lot of time waiting for test results. I'm just going to have to practice not thinking about it or I'll spend the rest of my life living from test to test. That would suck. So here comes another tornado.. I will let you know where it lands (and who it lands on).