Well...I spoke too soon about the pain. The day we left for UW, the headaches set in. They start by creeping up the neck, then my body gets disoriented by nausea and extreme smell aversion, and then the crown rises to the top throbbing around my head until I can time my ibuprofen/Tylenol assault. It's been one week now where I feel that I have been in full combat. Today marks 24 hours without taking a pain med and I am so grateful. It has been a bit scary wondering what we attribute all of this to. The shift in chemo to Methotrexate from Topotican (which helped my vision) could likely be to blame - typical chemo side effect which I have been able to avoid. But these symptoms are also all signs of leptomeningeal disease and increases in the cancer cell count (cytology) in cerebral spinal fluid.
The layer floating above (or below) all of this is...what next? There are very few options with LMD and I have now worked my way through one of them (Topotican by intrathecal therapy). Just finished a brief treatment of methotrexate which helped with vision, but possibly destroyed quality of life with horrific headaches. So now...I am off to University of Washington, Fred Hutch Cancer Center for Proton Therapy for cranial/spine radiation. I feel nervous, of course, to have my brain radiated. They said it will slow down my short term memory for awhile and to that I say...what if my brain function was bad in the first place!?
I am profoundly grateful to my doctors and to my doctors' friends and colleagues who are guiding my way. So many friends have checked in and received NOTHING from me in return. I am sorry. I am figuring out how to communicate better with everyone when I get knocked down and have no energy for anything. My preference is to just NOT get knocked down but I am up against something a little harder to control than I would care to admit. Please know all your wishes and messages are so appreciated and are giving me the strength to continue to beat the odds.
So the latest plan is to start cranial spine therapy on Monday, May 20 and finish Tuesday, June 3 at UW. I am determined (now that I will have super powers radiated into my brain) to figure out how to use this blog more consistently as a central spot to give updates. (And also give Carin a break from sharing updates that are changing constantly.)
An extra thank you to my local crew for bringing food over these next few weeks - as it is going to be challenging to wrap up the school year from UW! So much love to all of you!
Much love!
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