Wednesday, December 23rd
I feel so gypped. So ripped off. So ROBBED of an important experience.
How many times have I written of how much I suffer with Tristan at the clinic? The interminable waiting, the terrifying medicines, Tristan’s tantrums when his port is accessed, and, simply, the cumulative number of hours spent there. It has been really, really hard.
Gary arrived in San Francisco yesterday, and today he, as well as Phoebe, joined us for our clinic visit. I wanted Gary to see what we go through, to join us for the full experience. I wanted him to meet the good people who take care of us there, but also to FULLY experience the suffering.
Things did not go as such.
Tristan practically skipped into the clinic, joyfully announcing, “I am HAPPY! Because DADDY is here today!” He was smiling and cheerful. He was a perfect, cherubic little angel, sweetly complying with the medical assistant to get his weight and height. ZERO resistance to the blood pressure cuff (which, as you’ll recall, is frequently enough of a problem to send Tristan’s blood pressure rocketing through the roof, making doctors want to put him on blood pressure meds). Happy, happy, happy.
There was no wait. Five minutes after arriving, we were seated in a chemo cubicle. Daddy ended up in the special massaging Lazy Boy with Tristan in his lap. The nurse showed up with the chemo tray only a few minutes later. (It usually takes at least 45 minutes.) I asked Tristan, “Do you want Mommy to sit there with you for your medicine, or do you want to be in Daddy’s lap?” I mean, he and I are in this together, right? “Daddy’s!” was the gleeful response. WTF!? So, I sat in a hard, uncomfortable chair. Phoebe and Tristan were soon absorbed in iPad’s. The chemo was done in the blink of an eye. No long infusions needed for this one. No nervous nurse waiting bedside, checking Tristan’s vitals and looking for signs of allergic reaction. After four days in a row of chemo, Tristan had his port de-accessed, something for which he was eagerly waiting. Removing the bandages usually causes a major tantrum. Today: barely a wince, a minor whimper.
Then, one of the medical assistants came around and offered Gary a really fine scotch and soda…Ok, just kidding about that part. But I really wouldn’t have been surprised. That’s how easy things were going.
Then it was time for Tristan to get a prize from the prize bin. It’s usually a tiny piece of junk from the Dollar Store. Today: A giant robot for Tristan, plus a stuffie for Phoebe, orange soccer cones for Tomas, and a Santa hat for each kid. Gifts were spilling out of the stroller as we tried to leave. We needed a pickup truck.
So, on a Scale of Suffering, 0 to 10, today’s visit to the chemo clinic was 1.5, max. I could hear Gary’s thoughts: Hmmmm, that wasn’t so bad. Wonder what the big deal’s been? Piece of cake! Guess Toni has been exaggerating, as usual….Ug. I really wanted him to feel my pain. We were laughing in the car the whole way home about it…but grrrrrrrrrrrrrrrrrrrr.
Today was the fourth in a four-day stint of chemo. Sunday was the first day, which required being in the hospital, as the clinic is not open on weekends. On that day Tristan was given cytarabine and cytoxin. The latter of these requires a full hour to give and then four hours of infusion to protect Tristan’s bladder, so it ended up being a full day inpatient. It wasn’t so bad — it was pouring rain outside and, while the rain ran in sheets down the window, we read books and watched movies and visited with our favorite inpatient nurses, including Kim, who buzzed our heads back in July. On Monday Tristan got cytarabine in the clinic, and yesterday (Tuesday) Tristan first had a lumbar puncture in the OR to give him methotrexate in his spinal column and to check his spinal fluid for leukemia cells, and then had a clinic appointment for more cytarabine. Both Monday and yesterday my father joined us for the whole shebang. My father got more insight than Gary, I think, into the suffering, and I was glad to have him with me. A highlight of the experience, for me, was when he and the OR nurse got into a prolonged conversation in Italian. I couldn’t tell you how it happened, but there they were, babbling away over Tristan’s bed as he slept off the anesthesia.
Next week will be similar, with cytarabine in the hospital on Sunday and in the clinic Monday, Tuesday, and Wednesday. On Wednesday, a week from today, Tristan’s counts will drop dramatically. This time, it won’t only be the neutrophils, but also the white blood cells, red blood cells, and platelets. It’s all on purpose, engineered to happen. And then we wait. We’ll do his labs every other day, and there’s a 9 out of 10 chance that Tristan will need transfusions of one or more blood products if the numbers get too low. We are probably not looking at being home before the third or fourth week of January.
Tomorrow: Christmas Eve! Santa has been EXTREMELY generous this year. I think the kids will be happy.