This is a brief check in as my vision still slows my typing but my vision gets better by the day as does the rest of me but not with out a lot of help!
Here is what happened these last few weeks as my sister, husband and medical team repetitively help me piece together. We arrived in San Jose January 25 for a barrage of tests the next day. We also got to meet with many of the team members – all excellent. Wednesday the 28th early, early we arrived at the Operating Room. The five-hour surgery went well from what I understand. Afterwards, as mandated, I was wheeled to the ICU. It was supposed to be a maximum 24-hour stay or until I woke up. But I didn’t wake up until late day five, despite all their tricks.
Five days of this!
I left ICU for the hospital then rehab.
In rehab I was helped to reboot. To return to the Marcy I was before surgery and five plus days of NO movement. In rehab, I also had a most unscheduled brain seizure – panic, 911 called, EMTS arrived and promptly treated me and relocated me to the emergency room where my clothes were sheared off, more stabilization, then a return to ICU. I had one more seizure during this stabilization phase.
Apparently, I am the first patient in which treatment seemed to trigger PRES (Posterior Reversible Encephalopathy Syndrome) and Eclampsia:-Review. Of course I am patient #5 receiving treatment # 11.
My current status is that I stay appreciative of being home, the tremendous host support we received in San Jose, at the 24-hour care from my husband and friends, two trips from my sister in the midwest in two weeks
and horrified at my current physical status (sleep 18 hours/day due to anti-seizure meds.) I have jettisoned my walker for my cane but I do everything S L O W L Y.
What is next? Good question. I do not know, a reality I hate. I do know that today I start physical therapy. I should be back in San Jose today getting tests to prep me for a second surgery this Wednesday, treatment two. I withdrew from the trial, though, when it was obvious I would be disqualified for treatment two. This allows me the opportunity to re-apply. (And get accepted!)
My big conclusion from the last month? Dying is easy. This living and recovering is very, very hard. Thank you for all the support in the latter!
love,
Marcy, the lab rat
livingly dying 