If you have been following a long since the beginning of this you may remember that I have been listening to the podcast Terrible, Thanks For Asking. This week the episodes have included a daughter of an alcoholic dad, a new relationship gone sideways, a mom given 2 months of live but after a visit to DisneyWorld and a little pixie dust she is alive 9 years later, a mom convicted of murder who served time but was later found to have been acting in self defense.
Today’s episode, which has actually taken me 2 days to listen to, was about a 27 year old who was diagnosed with terminal lung cancer at 23. It was all about his journey through clinical trials. It hasn’t happened much yet that I have to stop in the middle of something because it is just too hard to listen to someone going through what we went through. Except that he is 27. Which is tragic. Super, duper, fucking tragic. The up and down of being on a clinical trial will live in my bones forever. It is written on every single new grey hair that is sprouting from my postpartum balding head.
Here we are, the time to write the end. Or is it my/our beginning? Or is it both? In October my mom went to California, like she had been doing once or twice a month since February. She had recently had scans, bloodwork and an echocardiogram. The scans came back good - stable disease. Her bloodwork came back good - for her. The ECHO came back…not good. Because I was really pregnant in October I didn’t go with her to this visit so I am listening hard on the other end of the phone and I hear Dr. Tsai say, “that would remove her permanently from the trial.”
My heart stopped and I said out loud, “NO. NO. No…No.” I can’t tell you what my mom’s face was doing but I knew she was deeply disappointed. This trail was the silver bullet, she was LIVING instead of trying not to die.
After that visit she had multiple ECHOs. None of them showed enough improvement to get her back on the trial. So began the beginning of the actual end. We had had many false starts to the end before, ones that felt like maybe she was dying but then she’d get better. From October - December things were actually okay. She had a brief hospitalization to drain fluid from her body due to the heart issues but even that felt sort of normal. A problem we could fix. Benji and I spent the afternoon in the hospital when he was 2 weeks old. My mom compared him to a squeaky rocking chair because he was a loud newborn.
In early January there was an ice storm. Even for seasoned Minnesotans ice is nothing to mess with. We left only when we needed to. My mom was weak, really weak, which we attributed to the cold and ice. It wasn’t, we would learn later, it was due to cancer spreading up and down her spine. Over the course of January she got weaker and weaker. We had reached the point that meant we were out of treatment options, even palliative treatment options.
I don’t mean to toot my own horn but I have had incredible luck with scheduling medical appointments. I have gotten tests ordered same day through text with doctors. I have gotten her into 2 clinical trials. Into treatment through Kaiser. I am good at this. I am good at just getting things done. I hit a road block with palliative care. What should have been the administratively easiest part of this - getting her whatever she needed at the end of her life - was actually the hardest part. We were denied a hospital bed. We never got a call back from palliative care. After days of back and forth and hours on the phone and a consult with her amazing Radiation Oncologist, she made the decision to enter hospice. It was the Thursday before her birthday. He said that things were likely to move quite quickly. He didn’t give a prognosis. They had all been wrong before. We were thinking a couple of months. She wanted to make it to Spring.
As soon as hospice kicked in we got a bed delivered, a light weight wheelchair, a new bedside commode. And meds. So. Many. Meds. Up until this point her pain had been managed by ibuprofen and it wasn’t even very often. Now we had morphine. She didn’t want to take it. Not interested at all.
We celebrated her birthday as a family. I cooked duck breast - maybe the best I have ever done. We laughed and tried to be as celebratory as possible. Barbara was there and sang her many renditions of happy birthday. Jen came the next day. We had some hard and important conversations as a family. In hindsight there were clues that she was dying. Clues that her body was giving up the fight, surrendering, finally, to this disease she had kept at bay for so long. Jen left, her brothers arrived. They had had a plan to reunite the 4 Eller siblings. The plan changed as my mom was no longer able to leave the house. The evening of February 12 we had a big birthday lunch for the eldest grandchild. That evening we had a dinner with her brothers and sisters in law.
The next morning I woke up to help her get up and she wasn’t interested. I had given her two doses of morphine in the night but it hadn’t really gotten on top of her pain. I went back to bed for a couple of hours while she had a series of visitors that morning and when I came down it was obvious she wasn’t doing well. “Oh Fuck, Hannah. Oh Fuck.”
Watching your mom express pain is something I wouldn’t wish on my worst enemy. It was different with our dad. He had been open about aches and pains throughout his life. He wasn’t good at being sick. I can count on my hands the number of times I have ever seen my mom in pain or sick. Now that both means that women are socialized to just keep going and men are…not. But it also means that my mom was a survivor. She was a do-er who just kept right on doing. She once preached with a broken elbow. I started dosing her morphine every hour and placed a call to hospice. They would send someone out that afternoon. We spent the morning planning her memorial service(s). She knew what she wanted except she wanted Barbara to choose the closing hymn. So we called Barbara. “Love you too, sweetie pie.” They hung up.
I got her to eat a little lunch. Keep in mind she had taken all her pills that morning. She was LIVING until all of a sudden, she wasn’t. At about 3:15 Jonah arrived and sat with her for a little bit, she asked to just rest for a while and that was that. She fell asleep and didn’t really wake up again. When Jessie arrived we decided that we needed to call the nurse back. The nurse came and at the beginning of the appointment was saying things about how she might wake back up. By the end of her time with us, under an hour, she told us that it wouldn’t be long. Her breathing had changed.
Neighbors had taken the kids. All the grandkids got to say goodbye. All of us took turns sitting with her. We decided that all of us E-I kids would sleep at the house. Sleep is really a silly term to use in this situation. Rest at the house is more like it. She had been breathing slower but louder for a couple of hours before I fell asleep. I would count the seconds between breaths…12…15…22. I went up to look at my babies and could hear her from upstairs.
When I can’t sleep I will sometimes put on Sound of Music. It’s like a warm hug. I fell asleep for maybe an hour and when I woke up she was gone. The house was so incredibly quiet.
I was flooded with emotions. Heartbreak. Grief. Gratitude. Relief. It was the end of her life. And the beginning of a new chapter. Hannah Eller-Isaacs: Orphan Child. A chapter in the book of life I never wanted to read let alone have to write for myself. The center of gravity for my life would have to shift.
Oh Hannah. Words seem so inadequate on my part; yet, yours are so beautiful, painful, generous. Because I loved your Mom, too, I am deeply grateful to be able to read about your experience of her final days and moments. I hope that this will always be a treasure chest for you, although it may not feel that way now. Your own writing will bring you comfort, I hope.....and please know that it is deeply meaningful to those of us who also loved her. Thank you for your courage and your vulnerability.
Hannah, what an incredible, powerful, beautiful thing it is to read these intimate reflections of so much life and love.