There Is No Pain You Are Receding/A Distant Ship Smoke On The Horizon

 Entry 1     11:05 a.m.

Except there is--pain. And it is ever-present. In me, in the kids, in all of us watching Jenny's decline. She is a shell of her former self, climbed so far inside her mind that she is in many ways a child. Her confusion and hallucinations continue. This morning, Chris texted that Jenny had seen her mother working in the nurse's station in the oncology clinic at VM. I think her liver is failing. The labs that would indicate that the liver is failing are consistently bad. Her BUN is at 6ml/dl and after a three week bounce back, crashed again last week and this week. I think that may be what Dr. P. sees when he says he thinks the chemo is working. Her creatinine levels have been bouncing below or just barely above normal since November. Mos telling, the alkaline phosphatase numbers have been consistently terrible since October, with only two exceptions, both good readings, months ago. And while there has been marked improvement in these numbers since the advent of this chemo, they are still almost 3x the high end of the normal range. Finally, her albumin levels have been at dangerously low levels since December, with one exception, and that exception was just at the lowest end of the range to be considered normal--so it could be a rounding error that brought it in range. (Note, Dr. P in his report this week says it is indeterminate with regard to whether the current chemo is working--can you be consistent, Doc?) 

Jenny isn't a 2005 Jeep Grand Cherokee jalopy, that bumps along just fine as long as it rests a lot. I have some experience with the jalopy, and with Jenny. She is a person, and in moments of lucidity is in sheer terror over how her life has suddenly devolved. She is in good company. Everything falls away now. We are getting down to cases, as the saying goes.

I talked to a family friend last night whose husband is a doctor, and she told me that Jenny's death would be better in the hospital. I think we agreed to disagree. Even if that is true, I do want to meet Jenny's desires, as expressed over and again, in writing and in conversation with many, to die at home in her bed. 

Off to Bartells and the grocery store. Will wonders never cease?

Entry 2 5:03 p.m.

I sent a message to both the palliative care doc and the oncologist. I am awaiting their responses, here is one of the messages. I was limited in characters and had to keep going back and editing, so if it sounds stilted and disjointed, that is my style amplified by the need to edit:

Dr. Picozzi

Jenny's hallucinations and confusion worsen. While at VM today, she saw her dead mother at the nurse's station. She sees flying people & said she rode the bus with Hannah Montana today. I am quite concerned about this, as one might expect. She's halved her Xanax. She's not using fentanyl. She takes her oxycodone regularly, although she regularly misses her middle of the night dose--the pain that  woke her nightly has dissipated. I speak for the family when questioning the purpose of chemotherapy now. Jenny can barely walk/eat/stand. She is incontinent; vomits often; has diarrhea or is constipated; has severe cachexia and debilitating neuropathy in her foot; is falling a lot and sleeping all the time--the list goes on. This disease has robbed her of most everything that one would call life. The marginal benefit is worse than questionable when measured against what she has lost and how she suffers. Why continue chemotherapy? How is this in her best interest?

Her hallucinations are worse than they have been before. A friend who worked with dying elderly patients who is here regularly told me and then called Chris and Moni and told them as well that she believes Jenny is close.