I Feel The Earth Move Under My Feet

 Entry 2     3:20 p.m.

I am putting this entry on top so it isn't missed. Today we had Jenny's palliative care meeting with Dr. B.  It was kind of a typical meeting, Jenny was giving him a run down on her health, hospitalizations, eating habits. He asked her what her goals are and she told him she wanted to taper off the meds so she could drive again.  He took a deep breath and we were off to the races.

"I think it's time you consider stopping your chemotherapy." He said we are at a point where it appears chemotherapy is doing more harm than good, and that if she stops she may be healthier as a result. He also told her that she would never drive again. She needs to be taking the pain meds to control her pain. Even if the pain waxes and wains, she is controlling the pain now, going off the meds would not work. The pain would return. [Let me just say, he should have told her this when he prescribed the goddamned fentanyl, all this fretting and fussing we have gone through as family and friends of Jenny could have been avoided had he just fucking said that in the first place.]

We were all taken by surprise. Well, I should only speak for Jenny and me, we were surprised. I expected this day would come, in fact thought it overdue. 

If I haven't written it down here before, I meant to--I spoke with her therapist a few days ago, she offered to speak with me--and I ranted, raved, cursed, practically tearing my hair out and rending my clothes in despair. Jenny is in agony more days than she is not. She is so weak she can barely walk. She is falling all the time, vomiting and worse. She cries out in agony for long spells, can barely breathe. She needs help in the shower, often needs help to dress. She is a walking skeleton. And still, they pump poison into her veins as if it were doing anything to promote her quality of life.  Someone, I beg you, someone needs to talk to her and tell her this no longer is working. I told the therapist I know Dr. P. will give Jenny chemo until she dies. Dr. B has gently tried, but be needs to be more direct.  

Voila! Dr. B then, as noted above, tried today to have that conversation and it appears Doc B and the therapist talked about suggesting to Jenny she stop chemo. Confirmatory evidence was given to me by Jenny, later, when she said that she had the same conversation with her therapist today, prior to meeting with Dr. B. Jenny said the therapist told her she had spoken with Dr. B about Jenny. So. . .

Jenny is not buying what her therapist or Dr B. have tried to tell her. She told those present on the call that she is not that sick. She is not close to dying. She is not going to quit. She is just fine, thank you very much, nothing to see here.

I held her. I held her for a long time. She was inconsolable. For a long time. For hours.  And hours. Moni and Silja, Jenny's friend here from Germany, were going to take Jenny outside. Around 4, Moni suggested they go, and Jenny declined leaving. She was too overwrought. Defying explanation, Moni decided to leave, taking Silja in tow (She is staying at Moni's). What kind of person leaves like that? So, it was me alone with Jenny who was falling apart, trying to adjust to the gravity of the day's discussion. She cried so hard she couldn't catch her breath. 

My tears had been spent hours ago, but I knew I would be in trouble alone with her, unable to offer any words of consolation. So, I called my empathic sister. She dropped everything and came over. She and Jenny spent the next few hours hanging out. Jenny was cheered up, Jane has some magic power, so much so that Jenny began eating a lot of food and laughing. It was a welcome change. I owe her a lot, my sister. 

Entry 1    10:17

Jenny tried to eat solids yesterday.  As they say in the world of computer programming, garbage in/garbage out. She vomited it all up in the evening, just as she had before she got the stent put in. She refuses to content herself with a simple liquid diet, and I understand. She is getting some nutrition, nevertheless. I would posit her weight gain of the last few days, she was at 142 last time we checked, has had far more to do with the IV and oral hydration she has been receiving, than the food she is trying to eat. 

She is as stubborn as she is weak. I think I understand what it is like to start limiting one's parents. No driving, no walking up and down stairs, no going anywhere without your walker. 

Jenny has voluntarily given up driving. No discussion with me about it has occurred since Dr. P. told her she could drive if someone wanted to go on a test ride with her, and nobody stepped up to do it. More than that, everyone she asked  has said it wasn't safe and declined riding with her. So, she is acknowledging, as she did last night in therapy that she can't drive which is a huge relief for now. The issue will likely rear up again. But for today, victory for her safety and that of the public is to be celebrated. 

She won't, nevertheless, stop doing things to prove the claim she made yesterday that she is not disabled. The issue arose in the context of discussing how I might get some respite at night. Jenny was offended,.and implied I shouldn't be tired given the help we have. "I have people here all day," she says. "People are cleaning the house and with me everyday." I responded, "And I dress you every morning, feed you most mornings, am checking on you throughout the day, am responsible for the dogs, for cleaning, laundry etc. And I am responsible for you all afternoon and evening and through the night. This was all discussed in therapy, the most interesting part we will come to in a bit.

Yesterday I got a random text from Moni suggesting Chris, Jane and I have a Zoom meeting. I responded, asking the purpose of the call. My sister Jane responded to the group, letting me know it was to discuss night time coverage for Jenny. I immediately shot back that Jenny needs to be involved in the discussion. I told Jenny about it later. She was upset we were planning to talk about her care without her present, strenuously objected to night time care, and was angry, understandably, if you ask me feeling attended to without at least consultation. She should have the say on her care to a great extent, and shouldn't just be subject to, "oh by the ways," which feels particularly degrading and even passive aggressive. Don't misunderstand, she isn't admitting how much care she needs, but nevertheless, it is her call, and decisions about her life are her decisions.to make. 

Every day another bit of her control is stripped away by this illness whether because of the physical toll or the impact of the pain meds, she has been rendered almost immobile. That anyone would want control in such circumstances isn't surprising. Jenny has never been a "Jesus take the wheel" person, in fact, I could see her planning where Jesus would sit in the car were she in need of a ride. 

Given this, the issue of control came up in therapy. I agreed with Jenny about her concerns, and gotta say I am as big an offender as anyone in my zeal to keep her safe. Her most adamant claim? She is not disabled, she said yesterday. They were words which by their utterance both underscored she is truly disabled and we're spoken as a wish to be granted, as if bt saying this, the opposite wasn't, couldn't be true. [I just was downstairs and heard Jenny telling Heather that she is going to schedule her car servicing at Lynnwood Honda for two weeks out, so she can drive.  See statement above.] 

Jenny's sorrow is about living like this, dying like this, and dying so damn soon. Everyday, I think about how much better this would be if only she were healthy. It would be such a huge relief for everyone. I feel like we are all stuck in a holding pattern until then, circling the bowl with nowhere to evacuate.

Okay, so we got into it pretty good in tandem therapy last night. Jenny told the therapist that I had moved back in the bed. The surprise on the therapist's face was evident. She said, "Wow, that's a big shift." So, I had to explain that it wasn't a big shift, that I had always promised Jenny when she was dying that I would return to the bed. I think Jenny is dying, but can't say that to her, she will tell me I am hoping she will die. Instead, and I was truthful, my reason for being in the bed, that I shared with Jenny, was my fear of her falling in the night. I need to help her get to the bathroom. I said explicitly, that is the reason I am in the bed. 

Jenny was angry. In whatever fantasy she is playing in her head, part of it remains that I should just pretend she isn't having an affair and just continue on as if it wasn't a thing. For once she didn't make that demand, as she has repeatedly before. 

However, she did say she wants me  back in her bed because I loved her, not simply to care for her. I explained I wouldn't be in the bed if I didn't love her, wouldn't be here at all. I reminded her that after I am moved out in January 2020, I came home each morning to care for her. Hoping she might remember this clearly, I told her that I returned home, not to leave again after she threatened to kill herself in February. Still, for her, it isn't enough that I am caring for her. It isn't enough that I am keeping her safe. Instead, she expects complete fealty and utter rejection of my reality.