When my body won’t hold me anymore– The Avett Brothers, “No Hard Feelings”
And it finally
Lets me free
Will I be ready?
My mom was going downhill quickly. I was so glad that I made the decision to come to California when I did. My dad needed some moral support and it was time for our family to discuss the exact kind of end-of-life care Mom wanted. At this point, she was incredibly weak and unable to walk more than a few steps without getting winded. The pleural effusion (excess fluid around her lungs) was knocking her out. Dad was draining her right lung every two days but it wasn’t enough to keep her comfortable. The other one which didn’t have a catheter would always fill up, and she’d have to go to the hospital every few days to have it drained, or else she’d really struggle to breathe and get to the point of panic. I imagine it felt like drowning and I know I would freak out if I felt that way.
There were other issues as well. She had just begun taking an experimental drug called Neratinib, which we hoped would prolong her life AND make her feel better. She was required to take 6 pills a day in one sitting and even though the pills were tiny, she dry-heaved after every single one.
It was difficult to keep anything down, but she dutifully consumed a variety of medications daily just as her medical team recommended. I hoped that me sitting next to her as she went through the grueling routine would provide some sort of comfort. I could tell she was glad I was there but at the same time, I could sense her going inward. I think the pain and suffering had worn her down. She was almost ready to let go.
But not before spending time with her loved ones. Over the next few days, our family gathered from near and far to be with her. Mom called this “circling the wagons” around her. My sister drove up from Mountain View, my brother flew in from Southern California with his daughter, and Jonas, Rhône and Rocky arrived from Paris a couple days later. We took advantage of this rare time together and celebrated our family’s May and June birthdays (four in total) and Father’s Day.
The presence of little ones, so innocent and adept at focusing on the here and now, infused these celebrations with pure and welcome joy. We ate, laughed, gave gifts and savored our time with one another.
On Mom’s 71st birthday, we sang “Joyeux Anniversaire” (it was a French-themed party after all) and she jokingly fanned herself in response to all the flaming candles on her gâteau au yaourt. When the song ended, she inhaled deeply and then admitted, “I need help!” She was on oxygen 24 hours a day. What were we thinking? Rhône quickly stepped in and together they blew out all the candles. It was a sweet moment.
Jonas, the kids and I were staying in the house right across the street from my parents, which was such a Godsend. Their neighbors went on vacation and said we could use the house while they were gone. This enabled us to do short visits with my mom whenever she was feeling well enough and all sorts of other things in town. We had planned on going to Southern California for a few days to see the rest of our family but as the trip approached, I couldn’t bring myself to go. I knew deep down this was probably the last chance I’d have to be with my mom and I wanted to stay and support my dad too. Jonas agreed it would be better for me to remain in Sonoma while he and the boys visited family in San Diego.
I spent my days at my parents’ house and each night I’d drag my groggy, jet lagged self across the street to sleep at the neighbors’. If Mom was still up, she would use all her energy to come stand at her front door and make sure I got inside the house okay. Just before bed, I would turn out the lights and shut all the curtains upstairs so I wouldn’t be awakened by rude streams of sunlight in the morning. Sometimes I would spend a couple minutes in the dark looking across the street and watching my mom through the windows. Most of the time she sat at the dining room table arranging her pills and looking at her medication checklist that we made for her. Other times she would be on the couch finishing up a late-night show. It was comforting for me to watch her. She was there – living and inhabiting that space – and I told myself I should remember this because soon she wouldn’t be.
One night before going to sleep, I happened to read a message from a friend of mine in New York. Her husband, an incredible jazz guitarist and loving father of their two beautiful boys, died in 2015 after battling a rare brain disease called Progressive Supranuclear Palsy (PSP). She knew what was going on with my mom and kindly passed along this eye-opening article from Dr. Atul Gawande called “Letting Go”. It really got me thinking about quality of life. I pondered all night how with medicine and technology, we can do intervention after intervention to keep someone alive, but what are the real benefits if the person’s quality of life is poor? Don’t get me wrong. Any extra time with a loved one is precious and if there is a chance for improvement or the person feels better as a result of these medical interventions, I’m all for them. At the same time, I wondered how my mom felt about her quality of life right now and what she wanted to do next. It seemed like the appropriate time to talk about hospice care and hear her thoughts.
The next day, I brought it up in the car on the way to Marin Cancer Care. I explained what I had read in the article and what I understood about hospice care. Mom responded immediately. She said, “I’m glad we’re talking about this because I was afraid if I said I wanted to stop fighting that you would all think I didn’t love you enough to keep going, and that’s not the case.” I told her that we knew she had fought long and hard and we weren’t expecting her to continue doing that. We wanted her to enjoy her remaining time as much as possible. The conversation was surreal. Strangely I wasn’t crying. I was calm and trying to figure out a plan that would most likely mean less time with her, but on the plus side could make her more comfortable. Dad was still hopeful that the Neratinib pills would do some good and wasn’t sure if she should sign on with hospice just yet as the pills would no longer be prescribed or covered by insurance. We agreed we would discuss our options with Dr. Galligan when we got to the office.
And so we did. I asked Dr. Galligan to lay out the best case scenario for Mom’s current treatment regimen of Paclitaxil chemotherapy. She said there was a 12-15% chance that the treatment would be effective. Not that she would be cured. That the cancer would be temporarily held at bay. She had no data on the Neratinib as it was an experimental drug. We could all see from Mom’s condition that it was highly unlikely she would bounce back. Even if there was another possible treatment, it didn’t seem like her body could handle it. I asked Dr. Galligan to define end-of-life care and then we discussed Mom’s goals. Dr. Galligan pointed out that Mom was using pretty much all of her energy fighting the disease, which she said could be viewed as “misplaced effort.” She said instead of fighting, her remaining energy could be used to do things she liked, such as spending time with her family, watching movies with her grandkids or looking at old photos. We then talked about hospice care, which meant no more treatments or hospital interventions, and Mom made it clear that this was the route she wanted to take.
I was so afraid to ask my next question. I practically whispered, “When she passes away, how does it happen? I mean, will her organs eventually shut down and then she’ll stop breathing?” I glanced at my mom, looking frail, yet beautiful and dignified as she sat up straight in her wheelchair. It was too much. I started to cry. Dr. Galligan handed me a box of tissues and returned to her seat. She told us that with the morphine prescribed by hospice, it’s usually a pretty peaceful process – that at some point Mom would take her last breath and her heart would stop beating. We asked a few more questions and finally, with resignation and broken hearts, we said thank you to Dr. Galligan for all she had done for Mom and our family. She left the room and I let out a huge sigh as I wiped away more tears. Mom said, “Come on. Don’t you be sad. I’ll be watching everything you do from heaven.” I looked at Dad and said, “Well, I guess that means we need to behave.” We laughed briefly and then the sorrow set in again.
Mom had one more quick appointment with the doctor who had installed her lung catheter so we were transferred to another room with a bed to wait. Mom was exhausted. We all were. Dad looked crushed. I couldn’t imagine the pain he was going through right now.
We were told the doctor would be a while. Mom offered me one of her pillows and I climbed in bed next to her. The nurses were nice enough to bring me an extra blanket. Mom fell asleep quickly and I closed my eyes and tried do the same. Instead came a wellspring of tears. They rolled down my cheeks and onto my pillow, silently, over and over again. I pondered so many things, but mostly: how much time did Mom have left, and how would we go on without her?