In The Hospital
Or...how my mom beat the all time visitor record
After writing out the beginning of the timeline it became clear to me that for my own memory’s sake I should break it up into more chunks. So much happened. It is sort of unbelievable when I sit down and really remember the details. Now let’s see - where was I…
Shortly after our dad’s death (we’re talking a couple of weeks) our mom received word that the immunotherapy hadn’t worked, the cancer had spread and that her prognosis was about 3-6 months. I remember hanging up the phone, falling to the floor and sobbing. I told Tim that when my dad got sick I knew we would be okay, because my mom would still be there. She was the source of gravity for my world. As long as she was okay, I would be okay.
She wasn’t okay. What we now know is that the immunotherapy caused a major adrenal imbalance. This imbalance caused her sodium to drop to 102 (remember when I said 116 was dangerously low?). After thinking she had the flu we decided that I would spend the night at her house. I left my apartment on the evening of August 28 with pajamas, deodorant, and a phone charger. I could not have possibly known that I wouldn’t be home again except to pack up our things. Early the next morning the dogs woke me up. Weird, I thought, that my mom hadn’t gotten up to let them out. I tried to take the dogs downstairs but Cory refused to go down the stairs. She pawed at my moms door and when I opened it I found her unresponsive. I will spare you the details of the new few minutes but needless to say it isn’t an experience I would wish on my worst enemy.
The EMTs arrived and took her to the hospital. Assuming she was having a stroke. I called our neighbors who immediately came over and drove me to the hospital. I was brought back to the family waiting room where I waited for my sister to arrive. I made a frantic phone call to Barbara Hubbard - scared her out of her wits and then had to hang up to talk to the doctor. They weren’t sure what was going on but they had ruled out a stroke. I told him to check her sodium, that she was prone to it running low. When he came back he said that it lower than he had ever seen. That most people who have sodium that low die.
They came up with a treatment plan and moved her to the ICU. She was unconscious for most of that time. One of her dear friends Meg was scheduled to come visit and came anyway - thank god. Jessie and I were both there when she started to wake up. We asked if she had seen her parents. In a crackly voice I will never forget she said, “Absolutely.” We asked if she had seen our dad. She said, “Yup.” “Did he ask you to stay with him” “Absolutely” “Did you tell him to fuck right off?” “Abbbsoooluuutteeely.” She was coming back to us. On September 2, my birthday, she was moved to a regular hospital room where she would remain for another month.
During her hospitalization she would have good days and bad days. Her body and mind fighting to keep her awake, aware of where she was. She was drifting between our world and a dream world. She traveled to Malaysia with Cory the dog. She worked on a political campaign in Chicago with our dad who was only half dead. We all lived in a studio apartment in New York while her doctors forced her to do heroin (not real).
But fought she did. Up and down. During the day she was never alone for more than a couple of hours. The three of us took shifts, friends, family and neighbors were there to help her advocate for herself. To talk to doctors and nurses. When we went to Minnesota for our dads second memorial service we had a couple of dear friends come stay with her. It was almost impossibly hard to be away but so important for us all to be there together. We got a call one of the evenings, “something is going on with your mom. not sure what. call when you can”. We got a hold of her doctor. She had an aspiration event and they had found tiny bursts in her brain. She was most unconscious again. As soon as we got home we met with her doctors and with palliative care. The palliative care doctor, whom I, not so lovingly, refer to as Dr. Pajama Pants, let us know that the situation was dire and we needed to make a call on how to move forward. We could fight for her or we could move her into hospice and stop trying to figure out what was going on.
We fought. We fought and fought and fought. So did our mom. The one female main doctor she had the whole time figured it out - encephalitis. They got her on a high dose of steriods and fairly quickly we started seeing glimpses of our old mama. The doctors were clear there were two options to get her out of the hospital. She could go home on hospice or she could go to a rehab facility. I wasn’t not willing to accept those two options and pushed for a third choice. With some magic behind the scenes we were able to bring her home on October 3. She (and the dogs) were overwhelmed with joy to be home. Kaiser put her in at home hospital program so she was able to get OT, PT, and Speech Pathology all at home. What a blessing that was.
We had decided to move in towards the end of September. It was clear my mom couldn’t live alone. Her ability to use a phone, drive herself, cook, read and write, and so many more skills were all either gone or greatly diminished. So there we were three adults, three dogs, one cat, one 2 year old, and a steady stream of friends and family coming to help. It was chaotic and busy and crowded but also joyful and fun and full of love.
She was still alive. Not dead yet, as she liked to say. A friend recently reminded us that she would tell her doctors, “What’s true is that I care deeply about living".”
Now…how to fight the cancer.
What you all went through. Ye gods. Thank you for sharing with us.