Saturday, September 9th
Warrior moms have powerful hearts, part living, beating cardiac muscle, and part iron where the broken parts have been soldered together.
Warrior moms know how to flush a PICC line and check for return. With their eyes closed, they can fill a syringe with meds to the correct tenths of a milliliter and split pills into the prescribed fractions. Just like any experienced soldier, they can catch a few hours of sleep in a tight space under the worst circumstances, tuning out the sounds of beeps, flashes of lights, and rolling, churning mattress underneath. They know how to delegate: doc, maybe now would be a good time for you to chase down that radiologist and get that report, so I don’t have to keep waiting to find out if there’s now a new, bigger problem. And they don’t have to be told no food for the kid after midnight before an OR day. Yep, got it.
Depending on what battle they’re fighting, some warrior moms have shaved heads. Some spend their down time in the trenches sewing cool hats for their bald kids, or decorating those lovely, smooth, open canvases. Others cook, either trying to satisfy the gnawing hunger of their chubby steroid nutter kids, or hoping something might stimulate the appetite of their skinny children.
On Labor Day Monday, Tristan and I drove down to San Francisco for his chemo on Tuesday morning. In the 24 hours leading up to our departure from home, we learned that my kids’ new baby distant cousin-in-law-twice-removed-and-I-don’t-know-what-else (I’m not much of a genealogist), just born nearby in Humboldt County, was being med-evaced from St Joe’s down to UCSF with a heart problem. We also learned that Noah (Noah from Mill Valley, who has Tristan’s form of leukemia with a bad twist) was at UCSF with an intussusception — where one’s intestine telescopes on itself and causes excruciating pain. I was in touch with both moms, and our trip quickly evolved to include multiple social visits in the hospital.
Tristan and I arrived in Mission Bay on Monday at 3, after slogging slowly through the mire of returning weekend travelers clogging up the 101 past Petaluma. I had planned for us to visit Noah and Susan first, as Susan had sounded so miserable on the phone earlier, but the security desk had screwed up my name on the “guest list” and wouldn’t let me up to their room. So, by pure chance, we ended up first at the baby cousin’s room.
When Tristan and I slipped into the room, I could see Cierra, ashen, sitting with a doctor. The doctor explained that he was just beginning to “tell her what we’ve learned”. I realized that I had arrived precisely at the moment that the baby’s mom, on her own, was about to be given the prognosis. (I remember that hour well.) I asked Cierra if she wanted me to stay, or to come back later. She asked me to stay. So then I sat next to her, and I held her, and I smoothed her hair, and I put my hand on her back, and I watched her heart tear apart, as the cardiologist described her baby’s heart as what amounted to something sounding roughly like a colinder — holes everywhere. He told her that Miona’s heart will never work like a normal human heart, but that, through a series of surgeries, he will construct for her a one-pump heart that will get her, probably, to her twenties. By then, or possibly before, she will need a new heart. Either way, her life expectancy is short. And she won’t be an athlete.
The tears streamed down Cierra’s face, and I could see the pain ripple to every cell in her body, but she didn’t crumple into a little ball and shut down. She asked all of the right questions. I could tell that she’s going to grow a new integument of rhinoceros skin really fast. Tristan, who had listened to all of this, put his hand on Cierra’s shoulder and told her, over and and over, “Your baby will be alright! Don’t worry!” I wasn’t exactly sure what to do with that, so I let it happen. It didn’t make any sense given what we were hearing, but it was the right thing for my son to do.
After the doctor left, Cierra cried, and we talked. Best of all for everybody, the baby nursed. She’s not in pain, not suffering. She’s a beautiful, black-haired, rosy-cheeked, good baby. I told Cierra that lots of people live 99 years and have a shitty day every day of their lives; this baby is going to have a happy day, every day of its life, filled with warmth and love and joy. That’s what matters. Doesn’t actually really matter how long that life is. And I told her that tonight will be the worst night of your life, but that tomorrow you will get up and start the rest of your life. You will make a plan, and you will go forward with it one step at a time. And when she said, this is so unfair, and I’m so angry, I said that’s why you’ll come to karate with me with you get back home to Humboldt. Okay, she said.
I remember that first night. That night I folded myself around Tristan inside of his crib in the PICU. I stayed there for many hours. I circulated through my tattered heart all of the things people told me had to happen: You will have to move to San Francisco. You will have to sell your house and bring everybody down here… Then I got out of the crib and slept for three hours, solid, on the fold-out bed. When I got up, it was the first day of the rest of my life. I think there were already a few bits of iron in my heart. And I had a plan. The plan did not involve uprooting my family. And it worked fine.
We left Cierra nursing the baby, working up the strength to call the baby’s daddy. Without consent from the security desk, we hopped hospital floors from Cardiac over to Heme-Onc, where Susan and Noah happened to be in the same room Susan was in with Noah’s sister Maisie when she was diagnosed with type I diabetes last Thanksgiving. That was roughly a year after Noah’s relapse. How ‘bout that? You should see Susan’s heart. It’s got iron patches all over it. But she’s been through so much, sometimes she needs someone to come in with a soldering iron and help put things back together. I think I’m going to take a welding class.
We arrived in Noah’s room to find him writhing in agony and Susan in tears, having just received a half-baked report on the morning’s ultrasound that involved some mention of air in the wrong place in Noah’s abdomen. Tristan, who was coping, settled down comfortably with a gigantic chocolate pudding from the cafe downstairs. Susan disappeared into the bathroom with Noah, and I started to fall apart. But then the doctors arrived on their rounds. I could hear them lingering outside of the door, and I could hear the nurse tell them that Susan and Noah were occupied in the bathroom. I leapt to the door. “But don’t leave!” I said, knowing that it would be hours before they’d appear again. “They’ll be right out.” Susan called out from the bathroom, “Just tell them to pretend you’re the mom and have them tell you everything.” I ushered the doctors into the room, answering their questioning looks. We know them all, and they were wondering WTF we were doing in Noah’s room. I explained all that, Susan emerged from the bathroom, and they clarified that there was no report saying that Noah has air in his abdomen, but that that was a possibility they wanted to eliminate. (How on earth was it allowed for a doctor to tell Susan an hour earlier that somebody MIGHT have seen air in Noah’s abdomen?) The doctors were still waiting on the report from the radiologist. Then there was more blah blah blah, not particularly useful or informative. Finally, maybe because it’s easier to be pushy for someone else, I said, so…where is that radiologist right now?? Oh, he’s probably reading Noah’s images at this moment, they responded enthusiastically. Um, I said, so what if you guys chased that radiologist down right now, because, um, then Susan wouldn’t have to sit here thinking that Noah might have a hole somewhere in his intestines?? Oh, yes, right, good idea! We’ll do that! They were back in five minutes with the report. No hole, and the intussusception had resolved.. The pain is probably just inflammation from tissue damage. Nothing a morphine drip couldn’t take care of. Holy fuck.
We visited Cierra again after we left Noah and Susan, and then again the next morning before Tristan’s chemo. Her father was soon to arrive, and her partner the next day. Noah has since been released from the hospital with boatloads of pain medications.
That night we cancelled our early dinner date with Dudley Carlson, our librarian friend, as we stayed in the hospital much later than expected. Instead we ate a late dinner with a Family House friend, Coco, and her kids, in the food court across the street from Family House. Coco and I drank a liter of sangria while the kids played and Coco filled me in on the recent chapters of her divorce from a mean husband and her daughter Charlie’s treatment for an extremely nasty version of Tristan’s leukemia. They have not been able to leave Mission Bay since Charlie began treatment at the new year. When she begins Maintenance in a week, they will move down south with Coco’s mother, and Coco will open a salon. (She’s the one who did the beautiful henna work above.) I’m pretty sure that Coco has alligator skin, in addition iron patches on her heart. Ain’t nobody going to walk over her again.
Tristan’s clinic visit the next morning was smooth. While his chemo was being prepped, he played with a social worker and I chatted with Shawna, the mom of Olive, who also has leukemia. Shawna is big and loud and definitely tough. She was in good spirits. Although Olive and Tristan were diagnosed around the same time, Olive will be done in February. The treatment is a year shorter for girls. It’s in sight for Shawna.
Susan, Cierra, Coco, Shawna, and so many others I’ve met at Family House and written about…Della, Eva’s mom, Ivan’s mom, Rita…warriors. Me, too. We’re tough. We’re mean. We’re part rhino, part alligator, part iron. We go on. We don’t break. But it still hurts so fucking much. I don’t know what to do with it, so I put it here. And now I’m going to go running. I might practice some of my karate kicks and punches while I’m at it.