"Sancho my armor! My sword!"
I know how Senior Quixote felt now. To be galvanized to heroic action, by a great up swelling of determination and virtue from the core of your being only to find it is fundamentally in vain.
Now I am not going as far as to say I look the fool like the old Spanish nobleman, but I am certainly humbled. Let me explain...
As set forth in the pervious update, Ann and I had formulated a 3 phase plan to cope with what is happening, scratch that word 'happening', too vague and polite. What I mean is her death There - I said it.
Unfortunately we are stuck in Phase 1. When Ann got back from MD Anderson she had a fall and hit her head while using the toilet. That lead to EMS showing up at the house and them discovering her blood pressure had dropped quite low. This brings us to the Emergency room and from there back into the local hospital. Time elapsed from discharge at MDA to readmission into hospital, a scant 16 hours.
So now once again residents of our local hospital we tried to make the most of it. Ann got moved into rehab and spent a good bit of time trying to get her stubborn legs to function correctly again - with some good and bad results. Steroid induced myopathy is stubborn and needs a long term approach to treatment for good results. But she pushed on and kept trying.
This is of course past tense. On Thursday of last week she started having difficulty with tasks that just the day before she could do. Also in the span of a couple of hours her O2 saturation began to drop from 99 to 86. Then a chronic cough, and difficulty breathing. Suspected diagnosis is of course pneumonia. So rehab comes to and end and she is moved to acute care.
IV antibiotics and antifungals are started. Cultures are taken of blood and sputum. Blood counts are checked and it is noted how low Whites, Reds and Platelets are, so transfusions are started. A couple of days later those numbers aren't getting better despite the infusions. So there is now serious concern that the infection in her lungs may have gotten a foot hold in her bones and be suppressing or ablating her marrow. Net result is that Ann is having trouble breathing without oxygen running - which right now is at 1.5 liters, but has been as high as 4 liters.
This all sounds bad and is. But the really worrying part occurred this morning when Ann coughed up some phlegm and blood. This is an ominous sign and points to a barely controlled systemic infection, of which they still do not have a cultured organism for. With out which there is no targeted method for fighting it.
But Ann, maybe out of a wisdom greater than my own, spoke the truth to me last night. Through labored breathing and with a long pause she said "Chris, I know I'm dying."
Those five words laid bear the truth to me. Like the old myopic knight I have been looking at the plan we made, urgently focusing on how to get to phase 2 (aka. the fun part -parties etc). Celebrating every step or achievement she made in rehab, just hoping that she would make enough progress so that we could resume some sort fiction of a 'normal' life until recurrent scans said we couldn't afford it anymore. I never seriously considered that Ann might experience too many complications to make it to that far.
It seems that these are the shores of the land we find ourselves unexpectedly upon. So we are revising our plans now before we lose the chance to do so forever. Tomorrow, I have an appointment at a well regarded inpatient hospice. If it is acceptable then we will be moving Ann's treatment there.
I am too tired and emotionally drained to proof read this.