And I Think My Spaceship Knows Which Way To Go

 Entry 1     9:37 a.m.

Two trips in two days. Yesterday, Jenny believes the medium who was with us was speaking with her mother, and that her mother and father were both present. Who am I to say?  Today, Jenny will be floating in a most peculiar way as she trips the light fantastic with psychedelic therapy. It will allow her to be more mobile than she has been in months. Speaking of which.

Last night at bedtime, Jenny crawled up the stairs to her bed. Arriving there, she was so exhausted, she climbed under the covers with her street clothes on. She began sobbing loudly. I was close behind, having gathered her night time meds. As I pass Leiney sitting on

the sectional, I ask her to come up and help. One could hear the sobbing throughout the  house. Arriving at the master bedroom, I leaned down and hugged Jenny, asking her if she was crying because it was so hard to climb the stairs. That was the reason, she acknowledged, and began crying louder. Her bed hadn't been made, she said, the flat sheet was not on the bed. 

By this time, Leiney had arrived, and she and I offered to make the bed. Jenny didn't want us to, saying it would be too hard to move. I kept her occupied, talking to Jenny as we stripped the bed of its blankets and I picked up dirty laundry and put it in her hamper. Leiney told her we could easily make the bed. Jenny sits up, and slides off the bed, trying to take her clothes off to put her pajamas on. She is almost too weak to do this, it seems. I put her pajamas next to her and Leiney and I finish stripping the bed and them make it--making sure the flat sheet was included. 

Jenny somehow found the reserve strength to get up, and I helped her to the commode. Leaving the bathroom, she started sobbing again. I came and got her into her bed, covered her up, showed her where her night meds were.  I left her alone with Leiney, who laid down on the bed and cuddled her mom for about 10 minutes.  

Jenny is close to the end of the road now. We can all feel it. Well, almost all of us, She said she no longer believes she will make it to Christmas, but I believe she still thinks she has much more time.  

Earlier in the evening, Jenny, on the verge of collapse, came in the house with her friend with whom she had the meeting with the medium earlier in the day.  They had been to sushi. Jenny suggested sushi prior to leaving, and assured me she would only get cooked fish--raw fish being strictly forbidden and miso soup. I knew it was a bad idea. They had been looking for soup places, and now she is suddenly hopeful for solid food. Hope truly does spring eternal with this one. It didn't work. She threw up immediately upon swallowing her first bite.  Back home, crumpled in a ball on the sectional with me next to her and Leiney on my other side, Jenny was inconsolable. Her friend having returned to her hotel, Jenny stayed curled up in a ball for over an hour. The room so quiet, and Jenny so still, Leiney and I thought she was sleeping. When I turned to Leiney and suggested we listen to a podcast, Jenny spoke asking if she and I were going to watch The Morning Show. She suggested she could just go to bed, I recommended the latter. Soon, I heard crying from the bedroom.

Yesterday morning, Jenny fell while out of the house. At the acupuncturist Heather, who had driven her, watched Jenny crawl up the stairs to the office. Once inside, as the receptionist was leading Jenny back to the treatment room, Jenny collapsed. It was too much.  After they returned home, Jenny collapsed in a ball (as she did later in the day after returning from dinner). I helped her with her coat, and Heather and I attended to her needs.

Jenny has seemed so resilient, it is weird to see her snap back and forth, but now quickly and suddenly spiraling downward. After she got the hydration and transfusion, she seemed so much better. But the salutary effects of those treatments, or maybe the joy of seeing Amy and Peter last week, has worn off. She is as bad off as she was prior to getting the stent, and in some respects worse. There are side effects of this disease that I don't discuss here--but it is plain living hell for her many days. Moreover, her energy level is zed, zip, zilch and nil. She was told to come in 2x a week for boluses, but she refuses to do so. This is hastening her decline. I respect it, she wants to have some quality of life. But it means a faster exit--which raises the question, why is she doing chemo? 

After she said to me for the billionth time she doesn't want to do this (chemotherapy, and the suffering) anymore, I spoke with her again about quitting chemotherapy.

Scylla

 She actually said, prior to my discussing chemotherapeutic nihilism (that's what the patient's decision to end chemo is called, nihilism, go figure) , she wishes she had a suicide chair. I didn't ask what that was, I had an idea, and its just so bloody sad (and not unreasonable) that she is suffering so much. She is too afraid to stop this herself, is what I take from that. She wants the agency taken away. She could achieve that if she stopped the chemo, moved to hospice and then voluntarily took her final exit medication that will be prescribed by the doctor. I don't want her to leave, but if she makes that decision at some point, I will understand it and support her decision. I love her. The more frail she has gotten, the more I feel the need to protect her, to help her. I honestly cannot bear what is coming--I can't possibly imagine her own abject terror. I know she will leave, I know I can't stop it. I know the girls and I will survive. There will, however, be a gaping hole in our lives, in the girl's lives, in my life, in the world, that at best will be patched over, but never healed. 

All of her shenanigans aside, we have been together on this finite journey for 31 years now.  31. I love her. She knows me better than anyone, anywhere, and I her. It will feel a part of my story is gone, like missing years of the narrative of my life, of our lives together. I really understand what it means when people say they feel like they have lost a part of themselves. Part of our combined story has already taken a divergent path, We, nevertheless, remain together, like pair-bonded geese. I will feel this pain, this loss for the rest of my life. The pain of her years long ongoing affair, yes, More than that, however, are all the memories we share, the births we celebrated together, the shared mourning of the loss of loved ones and all the stuff that happens in between. The shared joys and pains of life will matter little while I lay moldering in my grave, but while I am living, it will be consuming. I don't want her to leave, I don't want her to suffer. But caught trying to navigate between Scylla and Charbydis is where she finds herself. I am no pilot, can't say which choice is right or wrong, but I can tell her that I will stand by her side no matter which course she chooses. 

 

Can you imagine what it must be like for the girls? Abby, not even 18, Leiney but 20. I lost my father a two, a mitzvah compared to what the girls are going through. I didn't experience the loss they will process, or witness my parent disintegrating before my very eyes. I didn't suffer the disappointment of my parent's decisions like they have. My dad drank himself into a stroke, liver failure and death at 42, but I only know that because my mom told me so. The girls watched Jenny do things, make choices, which will pain them perhaps until they die.

I told Jenny this morning that I would support her if she decides to stop chemo.I suggested to Jenny we get her a wheelchair.  She was silent on both. Her sisters are going to talk to her about both of these things. Her sister Chris called me today to suggest I talk to Jenny about a wheelchair, which had already happened, and urged me not to go on vacation until spring break, which won't be possible given Abby's acting schedule, but we will see.  I also suggested to Jenny that she move a bed downstairs. The stairs are just too hard for her, and the risk of injury grave. She became enraged at the suggestion she give up this last shred of dignity. I get it, but it is time. Chrissy is going to talk to her about that. I am so overwrought today I am taking off work because, this is all happening so fucking fast.