16 April 2019

April Update

Without going too far into the weeds, my liver failed me, I had to stop immunotherapy, shortly after that my scans showed that it wasn't working and I had more cancer and not less, I'm doing BRAF/MEK inhibitors, my most recent scans were questionable (not definitively more cancer, not definitively the same or less either) so I go back soon to check more numbers and decide what's next.
Immunotherapy, or rather, my liver not functioning as designed, made me feel very, very terrible, and I lost 40lbs, and I can't work out anymore which is shockingly devastating to me, and I'm always tired, and sort of weak.
BRAF/MEK inhibitors are giving me side effects including a rash that is like a acne/poison oak combo (reasonably but not entirely managed with a prescription cream), intermittent fevers where I feel like I have the flu and I mean the actual influenza flu, and, most recently, severe arthritic joint pain.
It's all more or less manageable.
I'm still working.
I am medium likely to move this summer which is exciting but also daunting.
I am extremely unlikely to be alive when Arlo starts kindergarten.
New clinical trials coming online all the time of course but I don't need your cheery platitudes bro.
I had to go back to family court because it had to be ordered by a judge that Gabriel can go to summer camp and on the 8th grade DC trip and on our annual family vacation.
I hate all of my clothes and all of my bras but I also hate all of the new clothes and bras that I try to buy because really I just want my body back.
People keep enthusiastically praising my weight loss and I don't love it.
I have these horrible lumps (tumors) in my neck that make me hate.....everything (?). I'm going to ask my doctor to just hack them out of there when I see him again next week.
Plus side (maybe?) I wear my hair down all the time now (neck lump camouflage).
--
Gabriel is 13 and he loves junior high and he's made two different school sports teams and he loves his friends and he's great, even though he's also very 13 and sulky and GOD MOM *EYE ROLL*.
Everett is in preschool and also speech therapy to help with this stutter and also swim lessons to help with his swimming.
Arlo gets dragged along pretty amiably to all of the above although he is EXTREMELY wild and EXTREMELY LIKELY to run at top speed in the opposite direction if you let go of him so I need to buy a baby leash even though I've always hated baby leashes.
--
Work is good. I have been intentionally vague about my health which is my preference but it really highlights the degree to which people can be insensitive assholes.
I've been doing some light (work) succession planning, documenting of processes and procedures, things of that nature.
--
I bought a super sexy bathing suit and I love it but I have pretty limited sexy swim opportunities since I'm extremely unlikely to be in a pool without my kids.
I've been collecting fashionable sunhats too.
--
Oh and I signed all of my (personal) estate documents so I can cross that off my list.
--
My brother (my SIL!) is having baby #4 in the fall, a boy. Nothing like a fresh new baby to cheer everything up.