On Tuesday, December 15th, at about 6 PM, my mom died. She was 60 years old.
I had told you she was sick. She’d been diagnosed a year ago with CMML, a strange, extremely rare blood cancer that was supposed to be manageable for years. It was supposed to be cured by a bone marrow transplant (BMT).
On November 20th, my mom checked into the hospital for her BMT. She was excited and nervous. She’d been on oral chemo drugs for the better part of the year, and her oncologist had recently declared her cancer in remission. Blood cancer is a tricky beast: there are no tumors to speak of, so most conclusions are drawn from blood counts. (We heard a lot about platelets and white blood cells throughout this process.) Her doctor was pleased with her progress and deemed her a good candidate for the BMT. Her siblings were not matches (siblings are the first to be tested; offspring are mostly overlooked), but she had a near perfect donor, a twenty-seven year old woman from a country that was not the United States. This was all the information my mother had.
She was to suffer through four days of intensive chemo designed to obliterate her immune system to make way for the new marrow, and a healthy immune system.
My family flew to Pennsylvania for the Thanksgiving holiday on 11/21. The next day, I left everyone (nursing infant included) at my in-laws and drove to the hospital to visit with my mom. I brought her a care package filled with framed photos of her grandkids, moisturizer, Starburst, and recipes I thought she might like when she was stuck indoors for 100 days upon her return home.
I couldn’t stay long, because the baby would need me eventually. But we visited for a few hours. My aunts came as well, and we chatted and gossiped like normal. Mom was in good spirits; she liked the hospital because every need she had was taken care of, and she always raved about the food.
I got to visit her again on the Wednesday before Thanksgiving. We had spent the night in Manhattan, and stopped at the hospital on our drive back. Although we assumed the kids would not be allowed to see her, a doctor told her to have us all come in to the family waiting area. “You don’t know when you’ll be able to see them again.”
I saw her again on Friday morning, 11/27: transplant day. Unfortunately I was once again on limited time, and as soon as I arrived she was wheeled off to cardiology to ensure her heart still looked strong. I was able to visit with her for a few minutes. I know she was nervous, but the transplant was an IV infusion that wouldn’t last long. She had already sailed through chemo with few side effects. We were all confident.
Her last Facebook status was posted on 11/30. “Day Three and all is going well.”
And then it all went wrong.
On Day 6, she got a horrible pain in her abdomen.
“Oh Meliss,” she said to me over the phone on Day 7. “It was the worst pain of my life.” Then, a few minutes later: “I had a conversation with you last night. I thought you were here in the chair.”
It was to be our final talk.
The pieces of the puzzle took some time to come together. We eventually learned the extreme pain was caused by a gallbladder infection, that we eventually learned was caused by her failing liver (chemo and likely the hundreds of meds she was on prior made the organ dangerously weak).
But I knew none of this – and was still dangerously optimistic – when I received a group text on Day 10 from my uncle: “Sadly we are at the hope and pray stage.”
I can say honestly that it never occurred to me that this would go wrong. Perhaps that was naïve. Sure, J and I had discussed it. Sure, I knew statistics (there was an 80% chance of success). But I never let that fear in; I operated solely on the notion that my mother – fiery, quick-tempered, cheerful, gregarious – would survive.
The text engaged our family into crisis mode. I flew to Philly on Day 12 with Violet, thinking that I was going to say goodbye. It was hellish.
But wait! There was a sliver of hope when I landed. If we could get her platelets up, they could operate on the gallbladder. Fix the infection. Wait for her new immune system to begin to take hold, and all could be well.
I spent the days at my mom’s house with Violet. She came to the ICU with me on the first full day we were there (the night we got in, I nursed her, put her to bed, left her in the care of Gigi, and took off for the hospital). When we weren’t at the hospital, I would cook, or grocery shop, or watch hours of Hallmark Christmas movies, or wander around taking comfort in the essence of my mother all around me. My family members were in and out. On Friday night, after returning from the hospital, my cousin Tina said she was coming over, and asked what she could bring. Wine and ice cream, I told her. It was a small comfort.
Mom’s condition continued to be stable. I had initially thought I would return home on Sunday (we had been in Philly since Wednesday ). Each night I would FaceTime with the kids, and H would cry: “When are you coming home? I need you!” I missed them so much. I was so hopeful that Mom would remain stable; that this was just the start of a long journey, and I just needed to steel myself to travel back and forth quite a bit.
My step-dad thought it was a bad idea to fly home on Sunday, and I agreed. Tuesday – Day 18 – was the big one. We expected her new immune system to begin to grow her white blood cells and platelet count. I made plans to fly home on Tuesday.
I spent that morning packing and rushing to get us out the door so we could visit Mom at the hospital before we left for the airport. I was so relieved to be getting home to my other babies; and hopeful that Mom would be fine. We knew this would be a long road, I told myself. I’ll be back soon.
But it was not to be. That morning, we got news that Mom’s kidneys were failing, and she needed to be put on dialysis. It was bleak, but we still held out hope. And I think that is what needed to be, as my family gathered at the ICU that day. Gradually, reality came into focus.
It was the hardest day of my life.
Thank God for my sweet baby. I couldn’t fall apart, because I was a mother. My baby needed me; she needed to be nursed and changed and loved. I was so broken but also blessed to be there for my mother during her last moments. Not everyone gets such a precious gift. Sometimes goodbye is sudden and without warning.
And now: the hard part. Cultivating a new normal through so much sadness and heartache. Each day is different. I try to call her all the time. It’s hard to imagine she is not at home, on her couch, watching her crime dramas. I am so overwhelmed that my kids will not grow up with their Mom-Mom. The other day, I said the word’s “Mom-Mom’s funeral” and I quite literally sat stunned. Had I just said that? Did it really happen? Sometimes it feels like a horrible dream. I suppose this is how grief goes.
2016 is a year I have resolved to focus on gratitude and love. There is so much comfort in loving out, and being thankful for all the good in my life and beyond.