Tough stuff

​Tuesday, February 23rd

Tristan and I arrived at Family House yesterday at 5pm. After a short-lived euphoria at arriving here and finding a good parking spot, there followed a lot of sadness. Life is hard. I get that. There is no fair or unfair. I get that. Shit happens. I get that. But accepting that shit happens and there is nothing out there balancing fairness and life is hard whether you’re good or bad or four years old or eighty years old or rich or poor doesn’t mean it doesn’t hurt terribly when you get bad news about people you love.

I’m not talking about Tristan. Don’t worry. But please knock wood.

No, instead it’s other people, people I’ve come to care for over the last few months. After we arrived at Family House and unloaded our bags into our room on the fourth floor, I visited the lower floors to find a vacuum cleaner and case the food storage shelves for anything with vague appeal. (It’s down to the nubbins now as Family House prepares to move to Mission Bay next month.) I ran into the mother of the 19 year-old kid with ALL — the Mexican-American mama who fed me enchiladas ten days ago. She told me, holding in with such strength the grief that was almost leaking out of her pores, that chemotherapy didn’t touch her son’s leukemia, and that the doctors are opting for a bone marrow transplant, and that his sister isn’t a match so they’ll have to look in the anonymous donor database. Matching bone marrow is really hard — I think the likelihood of a match is something like 1 in 700 — so this is not an easy process. Later I brought Tristan down to the second floor to visit with Ivan, who told me he’s scared. He also proudly showed me a new, second Giants signature on his baseball cap — some of the players visited the hospital again and this time he got a pitcher to sign it.

After failing to find anything appetizing on the shelves, Tristan and I headed downstairs to get a takeout Thai curry for me, hotdogs for him. We ran into a mother I met at a Family House “family” dinner a couple of months ago. She had just finished sobbing, and it started all over again when she filled me in on the latest with her nine year-old daughter, who has a rare, bizarre disease in which her bones are brittle — she’s had over 50 fractures in her lifetime. There was new hope for her in a stem cell transplant from her little brother, who was a good marrow match. Her body rejected the transplant, but not before she lost her beautiful afro from the treatment prior to the transplant and then almost succumbed to the MRSA infection she picked up in the hospital during the transplant. So, now the family waits for other new potential treatments to come along. Soon, they hope, because Eva is heading down a road of wheelchairs and amputations and nerve degeneration. She sat on the couch in the Family House office, grinning at Tristan and chuckling with him. She is an amazing little sprite.

If that wasn’t enough, when Tristan and I were lying down to go to sleep, I got a series of text messages from the mom of the four year-old from Mill Valley whose leukemia relapsed two months ago. They are back in the hospital, and Noah has a fever of 105, pneumonia, no response to antibiotics, lesions down his throat and into his stomach from the chemo, and lesions of unknown origin on his legs. He hasn’t eaten in two weeks, and he’s been on a morphine drip for over a week. His mom’s final text said that he had finally stopped crying. I don’t think that’s a good thing, and I don’t think she thought so either.

So, I went to bed last night reeling from it all. What THE FUCK. Where am I supposed to put everything I feel?

We were due at the OR this morning at 6am. I got up at 5, showered and dressed, and lifted sleeping Tristan into his stroller. The city was beautiful in the early morning dark, and we got to the hospital smoothly. Tristan was up by then, and the poor social interactions-deprived kid was overjoyed to play with a pair of brothers in the waiting room. Things went without a hitch through having him breathe the anesthesia gas (bubble gum flavor), and the whole morning had been so smooth that, for the first time ever, I left Tristan on the surgery table without crying.

I met Noah’s mom for coffee downstairs and we had about half an hour together. What can I say? She’s hanging in there.

Things were bumpy for a while after that. I got the call from the OR summoning me back, the voice on the other end reluctantly telling me that Tristan was already awake. The nurses are supposed to monitor his breathing and heart rate and give me ample time to return to his side before he wakes up. So, that glitch pretty much dispelled Tristan’s notion that Mommy is with him throughout.

As we waited for Tristan’s IV drip to finish, I got a notification that the initial results of his lumbar puncture were clean. No leukemia in his spinal fluid. Good news.

Crabby Tristan and I headed over the clinic. Because his port was already accessed, today his tantrum only ranked about a 3 out of 10 and was relatively short-lived. He fell asleep in my lap while we waited an eternity to see the doctor and get the chemo started. I chatted with sweet Evan the Nurse, who brought me tea, sat next to me, and patted my hand while I sobbingly told him the sad stories of last night. He gently told told me how caring and compassionate I am, and then quietly said how “most people going through this find a way to block it.” In other words, Toni, maybe you’re feeling too much.

When I related Evan’s comment to my doctor friend Kinari, who called from Indonesia tonight, she told me that was bullshit. Most of these folks, these pediatric oncology nurses, for instance, who wall it all off and believe they’re not feeling it or not letting it get to them, she said, most of them end up with PTSD and, eventually, they crack in one way or another. Kinari told me it’s much better to process these experiences, these Noahs and Evas and Ivans, by letting oneself feel the suffering and the pain. Much better to grieve and cry and feel what there is to feel.

So, well, I’m feeling it. And it hurts.

Tristan and I got back to our room at Family House before 2pm. He said, “Mom, I don’t want to go anywhere or do anything. I just want to lie on the bed and watch Netflix.” I couldn’t have agreed more, so that’s what we did until bedtime, with a short break to order a pepperoni pizza that we shared with the Family House staff.

Shifting 180 degrees here…it was fabulous to be home all of last week. The kids were out of school for President’s Week, so Tristan got gobs of time with his siblings. In addition, Gary and I took a 20-hour vacation to a beautiful Bed & Breakfast on the coast a half hour north of Eureka. We had several complete conversations during which we were each able to articulate a series of well thought-out points without interruption, we took a nice hike down to a beach covered with beautiful smooth pebbles, and we ate a fabulous dinner at a nice restaurant. Oma and Nagypapa heroically hosted Phoebe and Tristan for a sleepover, and Tomas spent the night with a friend. A success all around!
Outside of our house, the periwinkle is blooming. One of Tristan’s two main chemo drugs is derived from periwinkle. I’m thinking about making a stab at a homegrown chemo business. We do live in Humboldt County, after all. Homegrown is Humboldt’s claim to fame. Our outpatient nurse wasn’t enthusiastic about the idea.
One more trip to SF in ten days, and then a two and a half week break before Maintenance…

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