"I'm slow to finish but I'm quick to start." --Red Hot Chili Peppers, "Desecration Smile"
With over two months since my last update, and since I figure this will be my last update, I figured I would put together one more post to fill in those who are curious about how Gayle is doing with her treatment and our progress as a family. I say that it's my last update because, as of right now, we have completed all of the doctor appointments, procedures, and visits. Yes, there will be additional checkups, years of injections and pills, and other steps to help keep Gayle as cancer-free as possible, but as far as immediate, actionable steps? We're done with those. Last time I wrote, Gayle still had three or four chemo treatments ahead of her. However, things didn't go quite as planned--and for once, it was a good thing. Here's the setup: As many of you know, our pandemic response has been much more proactive and hermetic than most. Our oldest son (whom I call Puck in these because he's still a minor and it's a way of trying to keep him somewhat shielded from social media exposure) was born with only half a heart. He nearly died at two weeks and again at six months; a couple of timely--or, more accurately, miraculous--surgical interventions kept him around. When COVID-19 hit, we realized that half-hearted kids don't get to survive pandemics, not without a lot of care on our part. We took immense precautions since March 2020 to do all we could to prevent his exposure, including having all three of our boys take online school, avoiding all familial and ecclesiastical gatherings, and rarely venturing out from our home save for some very carefully constructed get-aways. This has been our low-level stress, which only increased once Gayle's diagnosis with cancer came in October and when I brought COVID into our house in November. With that in mind, it's probably no surprise to learn that we watched the unveiling news about the progress of the vaccines with keen interest. As more and more good news came out and Puck's age-group soon became qualified for the shot, we started to see the light at the end of the tunnel. As soon as we could, we got Puck scheduled for an appointment to get the first dose of the vaccine. Schedule-wise, the earliest opening was on Friday, 21 May. Since it was a Friday, it meant that Gayle had another Taxol injection to do. Puck came with us (masked and sitting far from the others in the waiting room) while Gayle and I waited for the oncologist to show up. Usually, Gayle's oncologist was punctual and we had very short wait times. That day, however, he was behind. It was already half-past-noon and he still hadn't shown up. Nervous that I would miss Puck's appointment, I left Gayle to talk to her doctor alone. It was the first time that I had done that… I took Puck off to the vaccination site and got him processed. He was nervous--less about the shot and more about being around so many people at once. The smell of the alcohol swab on his arm made him panic a little--vestigial from his many different medical interventions over his fourteen years--but he handled the shot like a champ. To make sure he didn't have any immediate allergic reaction, we decided to sit in the half-hour waiting pen, just to ensure there weren't any problems. His cardiologist had supported him getting the shot, so we weren't really worried about what he might do in response to the vaccine, but he'd had some weird rashes in the past. Better safe than sorry. Because of that, I was still sitting in the waiting room, trying to read a book, when Gayle gave me a call. It was about 1:20pm, which was far too early for her to be finished with her Taxol ministration. I couldn't really see why she would be calling… …unless something was wrong. I picked up immediately. "Hey. What's going on?" I asked. "I'm done," she said. I tried again to mentally calculate how long I'd been gone. A time warp was, from a Newtonian perspective, impossible. I rather doubted that some sort of quantum fluctuation would account for it, either. The most likely reason why she was finished at the oncologist's office while I was still in the Utah County Health Department probably came about because of my own mathematical ineptitude. Somehow, I had misjudged the times-- "What do you mean?" I asked, still fumbling the numbers in my head. "I mean I'm done. Done done." "Wait, what?" I sat for a moment, dumfounded. "But I thought…" "Nope. When I told Doctor Thompson that I was pregnant-woman waddling through the Thanksgiving Point Tulip Festival, he said, 'We don't want that. You're done. The two more doses won't be necessary.' So…yeah! I'm done!" A strange surge of confused emotions swirled about me. I was not expecting that. At all. Putting my shoulder to the wheel and pushing was my modus operandi for this whole thing: I would remain focused on doing the immediate and anticipating the next step until the next step was no more steps. I wasn't begrudging the change, not by any means. I was really happy about it, as a matter of fact. But it still caught me off-guard. "It figures," I said as I wondered if I might just start crying in the middle of the vaccine distribution place. (And, boy, wouldn't that have been a godsend to antivaxxers? I can see their fake news website's headline now: "Man Breaks Down in Coronavirus Holding Cell".) "What does?" "The one time I'm not with you at the doctor's office is when you finish early." "I know, right?" Gayle laughed. We talked a bit more, then I hung up and told Puck the good news. I also fired off a few texts to relevant parties and dwelt on the relief that I felt. Once I'd returned to the doctor's office, I went in and filmed Gayle getting to ring the bell that indicated that she was done with her treatments--an action that, over the five months of her appointments, Gayle had never seen happen--and then we packed up and went home. To celebrate, we used a Texas Roadhouse gift card and ordered a meal for the three of us. We took it to go, since Puck still needed both his second booster and a couple of weeks to make sure his body was as fully protected as possible, but it was still a night of celebration. The school year was almost over, Gayle's chemotherapy treatment had concluded, and Puck had taken his first step toward a more balanced life. It was a good day. *** With the completion of chemotherapy, it was time to figure out the radiation process. We had already spoken with the radiation doctor once before. With the change in timetable, however, we now had to figure out a new process. My little sister was getting married at the beginning of June, so we had to figure out how to work the daily radiation ministrations around that hiccup. Throughout June, it was always a matter of juggling the desire to have a summer--complete with daycations and vacations--while still ensuring that Gayle made it to central Provo every day by 3:30. The radiation was not particularly taxing as far as any specific day. We had a commute, yes, but without classes to worry about, I was able to go with Gayle almost every time. We would arrive at the hospital, she would go back to change into a gown, then she'd lie on a machine with her arms over her head while being bombarded with radiation. For my part, I sat on a waiting-room chair and read Lovecraftian fiction. The side-effects of the radiation arrived subtly, and were always a background irritation compared to the neuropathy that still afflicts her. So, while Gayle's breast is tender and sensitive--almost like a sunburn--it's the chemo residue that's making life hard. Gayle already has carpal tunnel syndrome, and the neuropathy exacerbates that immensely. Her feet don't tingle much anymore--though they did--and her joints ache. Much like a senior citizen, she hobbles in order to start moving. Getting up and down is a bit of a chore. Her hands, though, are the real concern. The pain in her fingers will vary depending on what she's doing, but as a seamstress and costumer, she has been using her fine motor skills a lot more recently. When she wakes up in the morning, her hands are so dysfunctional that she can't scroll through her social media posts with a thumb; she touches the screen with an index finger and moves her entire hand upwards in order to scroll. Using a hand-fan with her Queen Elizabeth costume requires her to pivot her hand, which causes her wrist to tire. In fact, her overall strength is so diminished that I often have to open up Amazon-delivered envelopes or unscrew a bottle's top. This is the most concerning part, thus far. Her hair has started its regrowth, reddish fuzz haloing her angelic head. Her weight gain has been marked, and though we've had to buy some new clothes, it doesn't seem like it's going to stick around. Besides, with some exercise and dietary restraint, she should be able to fit back into some of her older costumes soon. No, it's the neuropathy. Gayle is a creator, one who's happiest when she's turning imagination into reality. It's been really disheartening to see her unable to keep working simply because the pain is too great to continue. Though rare, she sometimes wakes up unable to move because the pain is too much. Despite all that, Gayle is in good spirits. (She almost always is, of course.) She got to dress up as Queen Elizabeth I four times this past week--a magazine photoshoot, a private photoshoot at Evermore, riding in the Fourth of July Parade in Provo, and at a Renaissance Day experience at the University Mall--which really made her happy. The wig made of her hair has been seeing a lot of use. In the it's-totally-not-worth-it-to-have-cancer-but-we'll-take-every-perk-that-comes-our-way mentality, Gayle getting her hair turned into this wig is wonderful. In the past, Gayle would put her hair into curlers the night before a convention or a faire or what-have-you. She would sleep really poorly, so the stress of the day's events coupled with sleep deprivation meant that Gayle wasn't able to enjoy the activities as much as she could have. Now, however, she can get the wig set up the night before, sleep normally, and slip on the curls without much effort at all. As I said in my extended adjective, it really is a good perk--one of the precious few that has come from this experience. Gayle finished up her radiation on 8 July 2021. We went out to eat--in the restaurant this time, as Puck's now fully vaccinated--with her parents and all of our kids to celebrate. It was a really good day. (She got to ring the gong of completion, which was much louder than I was expecting.) The side effects of all of these treatments will likely continue to manifest as her body heals--a process that will likely take about a year to finish. We're hopeful that this truly marks the end of her aggressive treatment, and that we can focus on healing as much as possible. To that end, we've been having birthday parties, seeing family, and trying to relish what remains of the summer. We've some small vacations, plus a trip to the Utah Shakespeare Festival (which I missed keenly in 2020) planned, along with the tiny things that weave together the tapestry of our mutual memories. So that is, from what I can determine, the end of our unwanted journey. I added this section to my website back in October 2020 as a way of coping with my feelings and letting people who are concerned/interested in knowing more a way of getting the details that a Facebook post or tweet fail to capture. I didn't want to start this section of my website; I didn't want Gayle to go through what she's had to go through. But we're at the end of the race…so far as we can tell. I picked the lyric at the top of the post because it feels indicative of what we've gone through: We were hit hard by the news of the cancer, but we acted immediately and treated it aggressively. Now the slow finish of the treatment is here (with years of checkups and pills and shots, of course, to further drag out her recovery) and I am glad that it is. It feels good to say that, at this point, our journey is over. Comments are closed.
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