I have been resisting this whole blogging thing since my diagnosis for a couple reasons:
It makes it very real.
My fingers don't work very well from the Vinchristine Chemo, so typing is difficult.
I wanted this to stay my "teaching" blog, but I guess a "life" blog works too.
I haven't been able to focus on darn near anything because I let my brain get out of shape in the hospital.
And I was being defiant.
But now I'm ready to blog. I know it will be easier to keep people updated on everything and it's also a good way for me to share information with everyone at once, which is really a lot easier for me!
I was diagnosed with T-Cell Acute Lymphoblastic Leukemia on September 9th, 2015 (The first day of school). I spent 22 days at OHSU on the Bone Marrow Transplant and Hematology Malignancy floor, getting monitored around the clock. They finally let me go home, but told me that I will be getting chemotherapy, blood transfusions, and blood work done on an almost daily basis for the next 8+ months, and then will be getting maintenance chemotherapy in mostly the pill form for 2 years after that. We have been wondering how we're going to swing this while living in Florence, because word on the street was that the only hospital in the state that could deal with my condition is OHSU.
So here is todays exciting news:
A doctor in Eugene has agreed to take over my care!
This is huge for obvious reasons: That means that (almost) all of my appointments from here on out will be in Eugene and not Portland saving us so much time, money and energy. Except it's a little complex.
I'm only 1 of 12 patients in the state in my age group currently getting treatment for T-cell ALL. I am on a pediatric protocol, which essentially means that my cancer is being managed like it would in a child. Children have very resilient systems and so they not only have higher survival and cure rates for ALL but they can take a different sort of chemo regimen that older adults can't handle. Rather than knocking my system down with an intense dose of chemotherapy and then giving me time to recover over the course of a month like they do with older adults, I will be getting chemotherapy very regularly without time to recover. This means that my blood counts and immune system will be very repressed through the entire process, only allowing my system to recover slightly every month or two. There will be more toxins in my liver and kidneys than the norm and I am at a higher risk of any infections. This can put your regular oncology doctor way outside his comfort zone.
With this being said, the doctor I was assigned at OHSU is one of the only doctors in the region who has ever used the pediatric protocol for treating young adults with T-cell ALL.
The crazy part is that I am able to get treatment in Eugene only because my Portland doctor reached out to someone who he trusted to essentially hand a giant protocol manuscript to, and that doctor agreed to read it and do what the book says, asking any questions (or for help along the way) as they arise. I will still meet with the Portland doctor about once a month, but other than that, my new doctor is Dr. Jeff Sharman at Riverbend Pavillion. He agreed to step outside his comfort zone!
If you're feeling sciency and want to know more about my specific condition, my treatment protocol, and a ton of other crazy information (feel free to skim) I just found this publication that speaks very clearly about WHAT IS GOING ON. It is not light reading.
Thanks for reading this, I will keep you all posted on here!
Much love and gratitude for all of your support and well wishes through all of this, it means the world!