I know I have been promising a lot of individuals an update, or a call or text back. Your support is incredibly overwhelming and comforting, and I truly appreciate every single one of you for either checking in with me or making it easier on me and bombarding Rich with those calls so I can focus on what needs to be taken care of...
Unfortunately Upenn Gyno/Urology had nothing to say about my case, Dr. Gracia who is very well known there took incredible care of me and we did some tests however everything showed up normal. When you are sick and nothing shows up it can be quite frustrating as these symptoms have been on and off now for two months and... I am tired. I think everyone is, to be honest.
After a lovely check-up but zero answers in the PA area, Rich and I came up to NYC on Sunday and I had an all day appointment with O'connor's team. We started from Day One of Symptoms back in June and looked through every piece of imaging, all of my symptoms and blood work. Again, everything normal. Except for my not so lovely side effects and the fact that yes, I am a cancer patient. This leads O'connor and his team to two conclusions:
1) I may still have an infection, and so on Thursday we will do an Indium WBC Scan . This scan is a nuclear procedure in which white blood cells (mostlyneutrophils) are removed from the me (a bunch of blood) then they are tagged with the radioisotope Indium-111, and then injected intravenously back into me. The tagged leukocytes subsequently localize to areas of relatively new infection. So these areas will light up in even the most sensitive areas if there is an infection in the kidney, which obviously we are all hoping for, but at this point might not be likely.
2) It's my cancer. My disease burden has been low, and even though it would be a very difficult pill to swallow the truth is, nothing else is showing up on any scans or tests except my cancer (which is still stable). My body after a year and a half just may not be able to handle this amount of disease consistently and so it could be acting out in these symptoms. If the test on Thursday/Results Friday do not show any infection whatsoever in my body, we probably will conclude that it is my Hodgkin's, making it's appearance once again before I attempt to take huge steps in other directions (professionally and moving to a different area).
In the end, no one seems to know what this is for sure which is confusing, frustrating, and obviously upsetting. The EBV+ Trial has given me such an amazing quality of life, and to have to put that behind us will be heartbreaking. However, I should not jump to any conclusions just yet, we are taking this a day and a test at a time. So a day at a time it is, and I will attempt to keep everyone as updated as I can on the new happenings.
Thank you for all the love and support,
Lots of Light,
B.
7 comments:
Sending only the good stuff. Love and light and hope and strength.
Alyson
I can only imagine at the frustration this is causing....hoping for answers <3
It could be gallstones... Have they checked your gallbladder? It turns out that's what was causing my symptoms which were very similar to yours.... Our medications can aggravate a silent condition... Causing abdominal pain, nausea, fevers, etc.
They have ruled out the gallbladder, stones in gall and kidney, ovary issues, gyno/urology issues, and everything else you can image.. nothing has shown up for moths.
Well, shit. I'm sorry to hear your symptoms haven't gone away. No matter what you find out from the testing, one of the things I learned from the cancer experience is knowing is better than not knowing: once you know what you're dealing with, you can face the situation better, even if it's bad. Wondering is the worst. You're in my thoughts!
Oh, B. Sending you love from Chicago.
Hope this goes away quickly and never returns! Glad you got to have a lovely vacation. Sarah B.
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