Saturday, January 23rd
When I drove home from San Francisco last time, about two weeks ago, I felt the stress lift off of me as the miles rolled by. I had been so worried about Delayed Intensification (how could you not be, with that name?), the scary phase of Tristan’s treatment designed to wipe out most of his blood counts. I was still revved up, tense, as we crossed the Golden Gate Bridge. As we drove through beautiful Marin, the tension lifted a bit. Through Petaluma and Santa Rosa not much changed in my anxiety level, though I attribute that stasis to that bit being the most traffic-filled, aesthetically-challenged part of the drive. Then, as the city and suburbs changed first to oak-dotted chaparral and wine country, and then to redwoods and emerald green rivers swollen with this winter’s rain, my relief grew. I started to feel positively elated. We were done with DI! We hadn’t ended up in the hospital! We got to go home earlier than expected! Tristan ended up bald, or more with the do of a Franciscan monk, but, hey, hair grows back! Could have been worse! Phew, bigtime.
During the following week at home, I felt great. I felt so great that I sort of felt like we were…done. Like Tristan’s treatment was finished. It was a good feeling, totally unrealistic, chemically induced by the happy hormones that emerged on the drive north.
Then, when our outpatient nurse cheerfully told me on the phone as we discussed Tristan’s next course of treatment, “We’re going to blast him with vinchristine!!” the illusion shattered into a gazillion pieces. She explained that, in this final phase before Maintenance, Tristan would receive higher doses than before of vinchristine and methotrexate five times. Each time we’d need to have his labs drawn in Eureka, suitcases in the car, and wait for the results to ensure his blood counts are high enough to proceed. Then, we’d need to zoom down to the city for chemo the next day. To top it off, during this phase Tristan would need two lumbar punctures (spinal taps) to check his spinal fluid for leukemia and to inject methotrexate intrathecally.
I was crushed, my happy hormones flushed from my body shortly thereafter. I spent a few days being sad and just simply NOT WANTING to do these five trips.
We were delayed once, when last Friday’s labs showed Tristan’s neutrophil count to be too low to start the next phase on Tuesday. We had labs drawn again this past Wednesday, and his ANC had risen to 900, so we made the drive down. During the drive, I think I readjusted my emotions and expectations. Driving is good for that, at least for me. It’s the only time I ever just sit and think. When we arrived on 10th Ave in the Sunset District in 4 hours and 45 minutes and promptly got a parking spot about 50 meters from Family House, I was in good shape.
That was a good thing, because Thursday sucked. Tristan could not eat all day because his spinal tap was scheduled for 2:30pm (criminal, isn’t it?), to follow chemo in the clinic beginning at 10:30. He really was amazing though, and aside from the usual trauma of accessing his port (which he calls “putting on my port”), Tristan was great. In the clinic, we saw one of my favorite doctors, Dr. Robbins, a stately older lady who always wears a tailored blazer and trousers set, and I chatted for a long time with our social worker who recently moved from LA, has mixed feelings about being this far north, and hasn’t yet managed to push herself farther north than the vista point on the other side of the Golden Gate Bridge. She’s wonderful, and I always enjoy talking with her. She survived bone cancer when she was 15, and ovarian cancer in her late twenties. She has all the perspective you could possibly hope for. In addition, she has been brilliant in getting us small grants to cover some of the expenses transportation and travel to SF, and even a chunk of money to build a playset for Tristan at home.
We got through the two and a half hours in the clinic and proceeded to the OR. The night before we left Kneeland, Phoebe developed a cold. By Thursday morning, I could hear the cold in Tristan’s breathing, and he had a terrible, barky cough. We were just moments away from putting the mask over Tristan’s face when he demonstrated the cough for the anesthesiologist and she promptly nixed the whole procedure, pronouncing him way too croupy to go on. Anesthesia can restrict airways already restricted by croup. I was happy to finish at the hospital early, but miserable to think we’d have to make up this lumbar puncture soon. What a relief when our outpatient nurse called to say our doctors had agreed to just skip it altogether. Afterall, he’ll have a total of 19 of these over his three-year course of treatment, she said merrily. This one’s really not critical. Oy vey. Why were you going to do it then?! Don’t get me wrong — I love our outpatient nurse. With over 20 years of experience in pediatric oncology, we couldn’t have a better person to coordinate with the doctors, schedule all of our appointments, and put all our ducks in our row. She’s simply more…enthusiastic, yes, that’s the word, than I am about the happy miracle of chemotherapy.
We spent Thursday night at Family House, with a plan to drive home yesterday (Friday) morning. I was nervously checking Tristan’s temperature Thursday evening, worried that he’d get a fever. No fever, but Friday morning he woke with a terrible wheeze, sounding like a 90 year-old lifelong smoker or an asthmatic with a lapful of long-haired kittens or Angora rabbits. I grew up with two asthmatic siblings who frequently sounded like that, so I wasn’t hysterical, but I fired off an email to the outpatient nurse just to see what she’d say. As usual, her response came in about 4 milliseconds after I hit Send. “You should be in the ER!” she wrote. Crap. So, soon after 9am we were in the ER, and I was half expecting we’d be admitted — I even put the suitcase in the car, in case. In the end, no albuterol or epinephrine was called for, croup was the diagnosis, Tristan was given steroids to reduce the swelling in his airways, and we were out in two hours, surely an ER speed record. Per Ilana’s request, we spent another night in the city. Tristan woke this morning breathing freely.
On the drive home today we saw the most spectacular rainbow. From Sausalito to Willits that rainbow arched over the 101, one leg standing in a cow-dotted pasture or vineyard or behind a gas station, the other emerging from a slope forested by oak trees or a cloudy valley. Five, six, seven times it faded and reappeared amidst alternating cloud bursts and magical grey-skied sunshine. I’ve never seen a rainbow with such persistence, such staying power. It was marvellous. When we stopped at a gas station in Willits, I commented on it to the attendant. She called over her shoulder to her colleague, “Did you hear that, Sue? They bin chasin’ that rainbow since Sausalito!” Yep, for those of you who haven’t been here, there’s a cowboy accent that’s thick in some pockets of far northern California. Although he denies it, I’ve noticed since we moved back to his native Humboldt County that Gary sometimes slips into it. Make sure you tease him mercilessly if you hear him do it.
My peace of mind was somewhat disrupted on today’s drive home by Tristan’s new habit of repeatedly stopping and starting the portable DVD player, causing the disc to begin again and again at the very beginning with the infuriatingly aggravating advertisements. When I told him to stop messin’ with the machine, dagnabit, he responded, “Mom, just focus on your driving and let me open dis and check it again.” Twerp.
Home for nine days, then back again for the second of the last five treatments til Maintenance!