Sunday, July 23rd
I’ve been celebrating Tristan’s inguinal hernia for three days. I’ve never been so happy about a hernia. Tristan’s intestines are hanging into his nuts, and that is the most fabulous thing I can think of. It’s AWESOME. I love inguinal hernias.
Why? Because on Thursday, from about 7:30 am til 6 pm, Tristan had cancer again. Ten and a half hours of cancer. A relapse.
For about two months, one of Tristan’s testicles has been swollen on and off. Knowing about the risk of testicular relapse in boys diagnosed with leukemia, a risk that was as high as 20% until a few years ago, I had told our doctors in the oncology clinic about the episodes of swelling. On both of our last two visits to the clinic for chemo, the doctors examined Tristan extra carefully. On neither occasion was Trista’s testicle actually swollen. The docs were unconcerned: relapse is usually very fast, the swelling is extreme, it is hard, and it does not come and go. The doctors felt strongly that what I was seeing was either a hydrocoel or a varicocoele – water or blood, both very common, and not dangerous unless extreme.
But about a week and a half ago I was worried again. The swelling was greater, and it had been persistent for a week or so. Over a weekend, I emailed Dr Sabnis, our main oncologist at UCSF. He responded that he was not worried, but that we should have it looked at while it was swollen, as there wasn’t much to be learned by trying to examine it when it was not swollen. He asked us to have our local pediatrician refer us for an ultrasound.
The referral came through this past Tuesday morning, and St Joseph’s kindly fit us in that very afternoon. They don’t see a lot of pediatric cancer, and, every time we’ve had hospital time in Eureka, they’ve bumped us to the top of lists, moved us right out of the ER waiting room, etc. I watched the ultrasound screen like a hawk, but is all looked like storm clouds to me.
Wednesday afternoon I got a phone call from a doctor at UCSF. She had just received a written report from St Joe’s. No images. St Joe’s does not have the technology to send the imagery electronically. The UCSF doctor was very reassuring. She explained that the text described exactly a varicocoele, sort of a tangle of blood vessels…but, she said, the last line in the report was: “Confirm for testicular relapse.” Before I could have a heart attack, she did some more reassuring, explaining that she was fairly sure that this was a case of St Joe’s, unfamiliar with peds oncology, being unable to separate the cancer from anything else that could be going on. They knew that we had the ultrasound because we were worried about testicular relapse. There was something not normal in one of Tristan’s nuts, so it had to be cancer. The doctor said she’s request the images, and promised to call me the next day. Believe it or not, I was reassured. There was no mention of needing to do anything more than simply wait for the images to confirm that this was no big deal.
Thus, it was a surprise – a horrible, terrifying surprise – when my phone rang at 7:20 Thursday morning and one or our UCSF outpatient nurses said, “So, we’d like you to drive down here…” I immediately went ballistic. I was convinced that she simply hadn’t talked to the reassuring doctor of the day before, and that this was some sort of cross-firing of information after the nurses had read the “Confirm for testicular relapse” line. I got off the phone to make other calls. I didn’t even know what calls to make, but I was thinking that surely there was someone who could explain that this was all wrong and everything was fine. At the same time I was pulling out a suitcase and starting to pack. Then Dr Sabnis called from UCSF. He did his best to be reassuring, but, he said, the report from St Joe’s contained the word “solid”. “If we see the word ‘solid’,” he said, “we’ve got to take a look at this”. He hung up to see if he could arrange an appointment with a urologist, who would, he said, be better than he would be at interpreting the images.
Sobbing, I packed for Tristan and myself. Remembering how, exactly two years and two days before that very day, Tristan and I were med-evaced to UCSF with a fairly random assortment of clothes jammed into a medley of shopping bags, I packed carefully. I had no idea if we were going down for a day, or if we were heading down to start all this all over again, or worse, to start radiation. I booked Family House, too. Maybe we’d be inpatient, maybe not.
Dr Sabnis called back to say the urologist would squeeze us in about 4pm, and could we arrive about 3, 3:30 to come first to the oncology clinic. Oh, and could we please go to St Joe’s, pick up the ultrasound imagery on a CD, and drive it down. Positively Stone Age, isn’t it? It was 8:30.
By this time, Gary knew what was going on and Tristan was up and dressed and eating breakfast. Tristan begged to take Phoebe with us. I promised him a Lego instead. He, of course, did not understand the terrible hugeness of the reason for our trip, and the reason Phoebe could not come.
We drove down our mountain, picked up the CD at St Joe’s Radiology, and headed south. Tristan watched movies, and, behind my sunglasses, I cried and cried. Tristan thought I was crying because we had seen a road-killed fox. I let him believe that. My kids think their mom is a freak anyway. That had to be better than telling him I was crying because I thought I was driving him to SF to have his nuts radiated.
That six hour drive was the worst six hours of my life. When, two years and two days before, we sat for hours in the St Joe’s ER waiting for med-evac, and then sat on the flight, and then rode in an ambulance from the airport to UCSF, I had no idea what was going on. I was tired, and I was worried, but I had NO FUCKING IDEA what we were getting into. We had been told we were being sent to UCSF for a biopsy that would help determine what was going on. I firmly believed that we would do the diagnostic tests, find out what was wrong and that it would not be a big deal, and go home. I did not for a second think that Tristan had cancer and that, well, that everything would change.
But on this drive, I knew exactly what were the possibilities we might be heading for. On this drive, I zoomed right back to two years ago. We were starting all over again, and it’s always worse the second time, or the third time, or the fourth. It gets worse and worse, harder and harder. The chemo scarier, the doses bigger. There’s radiation. They hit you harder, wanting to catch every cell, knowing they missed some of those tenacious little bastards before. As I drove and visualized the terror ahead of us, I also made big changes to my life. By the time we parked at UCSF at 2:45, I had quit my new job as a lecturer at Humboldt State (what the fuck was I thinking, taking that on already?), made significant modifications to my marriage, changed the way I parent, and shaved my head again. Needless to say, I was exhausted and my eyes were puffy and red as we walked into the medical building.
Thereafter followed three hours of hopping from one clinic to another. UCSF moved heaven and earth to see us in the oncology clinic, cram us into Radiology at 4:45 for another ultrasound (the one from St Joe’s was so bad it was uninterpretable – storm clouds!), and hook us up with the urologist after she’d had a full day in surgery. The whole time – for every minute of three hours – our social worker Jenee sat by my side, talking with me and playing with Tristan. Jenee lost a leg to bone cancer at 15 and had ovarian cancer in her 30’s. She’s definitely got credibility. Also, sweet, kind Dr Sabnis was in and out to be with us, and delivered tea and a snack, and then spent the full last hour with us. Tristan was amazing the whole time. No fussing, no complaining. He played games on a clinic iPad and chatted with Jenee and the doctors.
And in the end, after all of these good people had done everything they could as fast as they could at the end of a long day, we got an answer. I don’t think I could have waited until the next day. I would have gone nuts. No pun intended. The peds radiologist took one look at the fresh, new, high resolution ultrasound imagery and said, “That’s a hernia!” The urologist confirmed with an exam.
By this point I was numb and my brain was no longer working. “So…do we still need to biopsy Tristan’s testicles? Is there ALSO a solid tumor in there?” I asked. I think I might have believed for a moment that Tristan had a hernia ON TOP of cancer in his testicles. Dr Sabnis laughed. “No, no, there’s no cancer!” he said. We’ll come back to UCSF in a week to have the hernia repaired simultaneously with Tristan’s next intraspinal chemo – saves us one anesthesia.
I have never been so relieved or happy in my life. To celebrate, Tristan and I drove straight from the hospital to the Target on Geary to buy Legos, and then continued over to Agi and Chris’ to drink champagne and build a complicated Ninjago vehicle. We toasted to Tristan’s guts being in his nuts.
On the upside, this terrifying journey landed us in the Bay Area, where this weekend we are watching Tomas and his All Stars team play in the State Championships in Fremont. They are one of seven teams of the 250 All Stars teams in California to make it to States. The ten year old team also made it to States. Humboldt County may have crummy medical technology, but we sure do make good baseball players.
Getting us all here required quite a bit of coordination. As you know, Tristan and I arrived via hernia. Tomas spent the week near Oroville at a camp for siblings of pediatric cancer patients. Phoebe and Gary drove inland and down the 5 on Friday to pick him up at camp yesterday morning and sweep him down to Fremont. Tristan and I arrived at 11:45. Gary, Tomas, and Phoebe arrived at 11:59, with the ceremonies to begin at 12. We’ve got our timing down. In the blistering heat, Tomas’ team lost badly, but they seem to have a tradition of losing their first game in these double elimination tournaments. This afternoon they will play again, and they will come on doubly pumped up and ready to battle.
Other words about the summer:
It’s been intense and fun. I’ve been busy writing lectures in preparation for the job I mentally quit on our drive down to SF; Tomas has been earning money through mowing and other outdoor work, as well as playing lots of baseball;
Phoebe got her purple belt in karate, has done an outdoor camp and an art camp, and hosted a “Summer Party” for her friends last week;
Tristan has been having fun at preschool and building lots of Legos;
and Gary has been working and driving Tomas to baseball tournaments in places that are too hot. The kids and I have had several river days, none of them involving accidents with boulders, I’m happy to say.
And finally, we appear to have won an important battle on the home front: the kids and I built a fabulous scarecrow that, so far, is keeping our permanently-resident pair of ravens from stealing a dozen chicken eggs a day. Our ravens have the glossiest, blackest feathers ever, thanks to their amazing diet. They are not happy with the new arrangement.