"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. "One of us might lose his hair,
But we're reminded that it once was there." --They Might Be Giants, "Mammal" In the tortuous (and torturous) path to this point, not a lot has happened that's necessitated another update. Still, it's been two months since I last wrote about how Gayle is doing with her treatments. I may as well go ahead and use my time now, while she's in getting her Taxol shot, to fill in any who are curious about our current status. We're…okay…ish. As far as what's good and exciting, we are down to two more appointments (after today) and then we'll be done with all of the chemotherapy requirements. That in and of itself is worth celebrating. Though the ordeal is far from over, the hardest part is almost behind us. Coupled with that is the ending of the school year. It has been a challenging year in all sorts of ways that I'm not keen to get into. Suffice to say, our entire family is really excited to finish off 2020-2021 academics and focus on something else…anything else. Though May poses its own difficulties, what with students being just as antsy and anxious to finish classes as teachers are, we're overall optimistic about finishing everything off and heading into summer. The best news recently is that Gayle received her hair back! In January, a couple of days before her first chemo treatment, Gayle had her hair "harvested" and sent to a wig-making company, Compassionate Creations. The California-based company took the hair, added to it as necessary, and hand-wove a wig with Gayle's own hair. The result is stunning--you can see it in the picture above--and it also inspired today's opening quote. Gayle has worn it around the neighborhood and to today's chemotherapy session. She plans on wearing it on Monday to school, and I hope that she gets a lot of use from it. After she starts growing her own hair back, it'll be a useful cosplay wig, as it'll allow her to dress it up the night before and not have to get up so early--or sleep in curlers. That means she'll be less cranky during the cosplay event, which is all to the good, I say. It isn't all roses (though Gayle's garden is blooming apace and gives her a smile whenever she sees her flowers): A couple of weeks back, Gayle told her oncologist about some neuropathy she was experiencing in her fingertips and feet. They put her on a regime of vitamin pills to help bolster her system. They also tweaked her Taxol administration, lowering the dose by twenty percent. If you recall, one of our rationales for extending our Taxol ministrations to a weekly visit over more weeks, rather than larger doses every two weeks, was to reduce the risk of Gayle losing the feeling in her hands. Despite those best efforts, the neuropathy is growing. Gayle is now at the point where her fingers are constantly numb. Picking up heavy things is painful. Standing or walking for too long--ten or so minutes, it seems, though that may be more my perception--causes her feet to hurt. One of her primary coping mechanisms for when she's feeling glum is to get something fun to eat; the treatment has taken that, too, as her taste is inconsistent at best and non-existent the rest of the time. Worst of all, her fingertips are so numb that she can no longer work on costumes. Gayle's sunny disposition has been clouded by concern over this. Last night after dinner, I came upstairs to find her crying in our bed. That isn't a common thing--a more familiar sight in recent months than any other time in our marriage, though--but it didn't really take too much Encyclopedia Brown-ing to figure out what was wrong: She had hoped that we could go to the Tulip Festival at Thanksgiving Point, but an after-school meeting held me back too late to actually go. It wasn't that we missed out on the Festival--we'd been earlier in the Festival's run, and while there weren't as many blooming tulips, we did see a fair amount--but just the idea of doing something that would take her mind off of this gradual loss had been helping her get through the day. With my tardiness, I ruined that opportunity. After drying her eyes, we climbed into the car and drove to south Orem to visit the Nielsen's Grove Park. Though they didn't have nearly as many blooming tulips, they did have some. We walked through the small garden, then settled next to the pond to watch the ducklings squeak for their mothers while snapping at midges and mosquitos hovering over the water. We even saw some lucky ducks get lucky, as it is (apparently) mating season for the animals. Afterwards, we got milkshakes. While it wasn't a replacement for her being able to do the hobby she loves so much, it was still a nice evening together that helped to take her mind off of things. Nights like that are rare: For the most part, Gayle is really optimistic and happy. I can see, however, worries haunting her. I know that we've been really fortunate. The cancer was detected and removed without any clear indication that it had spread beyond that one lymph node. All of this stuff--the chemo, the hair loss, the pain, the sickness, the malaise--has been done as a preventative thing with the hope that the trials of 2021 will protect us from greater trauma farther down the timeline. That doesn't, however, make any of the experience easier, nor is it fully reassuring. For all we know, every sacrifice we've gone through, every emotional scar she is suffering through is doing nothing but scarring her. There's no evidence she has cancer anywhere else. But there is the possibility that there's something else in her, and this is to make sure it doesn't come back. It makes it…hard. I don't mean to paint an overly-bleak picture here. Gayle is doing really well, and has been an inspirational pillar of beauty and kindness to me and my boys throughout this entire ordeal. Three birthdays in our family have already come and gone with great success--largely because of her--and her students are still receiving a large amount of her attention and talent. We've both been vaccinated and we're optimistic that we'll be able to get our heart warrior son his own doses soon so that we don't have to stress over a lethal pandemic and treatment at the same time. We also have a lot of fun things planned for this summer, which has done a lot to lift moods. To be frank, though, I don't think that I could handle a similar situation with half the grace and professionalism that she demonstrates on a daily basis. It really is inspiring to see her commitment to living her own life and not let cancer become her defining feature. We are quite worried about the neuropathy and the possibility (there's that word again) that it might become permanent is weighing on us. If you're the praying type, a word on her behalf to the One above would be appreciated. Many thanks to everyone who read this far, who has asked after Gayle's health, who has provided some sort of support (money or meals or just a bit of ad hoc help). It hasn't gone unnoticed, nor unappreciated. "Give sorrow words: the grief that does not speak
Whispers the o'er-fraught heart and bids it break." --William Shakespeare, Macbeth Today marks four months since we first learned about Gayle's diagnosis. A lot has happened, including 4/5 of the family coming down with a novel SARS virus, a lengthy holiday, a bizarre election and its fall out, and an attempt to get used to this new way of life. Gayle has had two surgeries--one to remove the cancer and the other to install a port to simplify the chemotherapy--and has now had four bouts with the AC part of the treatment. This is a milestone, as AC tends to be the worse of the chemotherapy treatments. Originally, we planned on continuing the every-two-weeks treatment schedule for the second half of the therapy. Taxol tends to have less extreme side effects, though the bi-monthly ministrations last longer while in the clinic (four hours or so, as opposed to barely two). However, there were some mitigating decisions that we had to take into consideration. See, we had our consultation with the radiation specialist. He explained that, because of where and what came down with the cancer, he recommended broadening the areas of radiation treatment. The idea is to do everything possible to ensure that the cancer doesn't return. Indeed, this is the reason that Gayle's going through chemotherapy in the first place: It's a proactive approach to safeguard her from future problems. It's not to kill or shrink the cancer in her body--from what we can tell, she's been cancer free since the beginning of December. One of the side effects of the radiation therapy is physical exhaustion. Gayle already operates on very little sleep; during normal life, she struggles not to fall asleep in the car on the way home from school almost every day. This was something that alarmed me early on, when we were first figuring out the best steps for her to go through. The last thing she needs is something that makes her even more tired. With this in mind, we discussed how long the treatment should last. Because we want to avoid neuropathy as much as possible, we knew that a lower-dose treatment over a longer time frame would make more sense, which the radiation doctor agreed with. That means that she has twenty-five doses--five a week for five weeks--of radiation to go through. Faced with that reality, we approached the oncologist with a modified plan forming: Rather than taking Taxol once every two weeks, we thought that we should do a lower dose over the course of twelve weeks. The reason for this was two-fold: One, we could shift the day of ministration from Wednesday to Friday. Because of COVID, both my and Gayle's schools don't have any classes being held on Fridays. Though there's still lessons uploaded and work being done, there isn't a need for substitutes or specific, rigid timeframes. The second reason was because extending the treatment schedule for twelve weeks meant that we would be at the end of the school year when Gayle finished her bout with Taxol. Radiation therapy starts two or three weeks after the last chemo appointment, so this means that Gayle would be able to start radiation at the very beginning of summer. And while this means that we'll have a daily commute to the doctor's office for half of our 2021 summer, it also means that I don't have to worry about Gayle being too fatigued to make it home from the clinic. So that's our current update: Gayle has finished with AC (which is great, because it has been about as miserable as expected; she's puked twice thus far and has been so nauseated for so many weeks that it reminds me of her pregnancies) and will be taking a longer ministration of Taxol for the next round. Then it's off to a month-plus-one of radiation treatment. If this plan remains in place, we'll be done with radiation (and perhaps even have the short surgery for getting the port out of her) and this entire nightmare by the time August rolls around. When it's laid out so simply like this, it sounds almost minor. When it's lived through--and still remains ahead of me to live through--it's almost insurmountable. When our oldest was first going through all of the trials of having heart surgeries and trying to plan around what was simply a bundle of chaos, it was easy to let go of expectations. We could hope for the best, plan for what we could, but mostly we ended up hitting the bumps in the road at unexpected moments. This experience has been like looking down a rut-filled street and going forward anyway. Each jolt hurts a little bit more than the last and it's not even any single pothole that's causing problems, it's just the cumulative effect of the poison in the system that's wearing me down. (In Gayle's case, that's literal; for me, it's still just metaphor…and a mixed one at that.) I'm soldiering on because I don't see what I could do besides. People are still wonderfully and thoughtfully helping us with meals, alleviating a major strain on my day and assisting us with an almost anonymous aid (thanks to COVID, I sometimes don't even see who it was who dropped the food off on our porch). Both of our schools have been incredibly understanding, with coworkers picking up the slack for us when necessary. Parents, friends, and family are still fasting and praying and thinking of us. I'm not saying that this is a struggle that we're going through on our own--not by any stretch. After all, we've been spending the night in my in-laws' basement every other week so that Gayle is looked after while I'm at work, to say nothing of how much babysitting my mother-in-law is doing. And, were it not for COVID and the different precautions we have to take with it, my parents and siblings surely would have been extending hands toward us to help out. I'm inexpressibly grateful for all of that kindness, compassion, and thoughtfulness that has been so continuously extended to us. It's been a crucial contribution to this unwanted and unexpected journey, without which I don't know how we would've survived as a family. With all that being said, I don't know how I'm supposed to continue on this way…for me, personally, that is. My depression is getting so bad that I'm actively pining for April 2020--you know, the first full month of the pandemic when everything felt like it was on fire and the anger and mourning and sadness and frustration were at their peaks? Yeah, I wish for those good old days. I haven't felt this disengaged about my work since…early 2008, before I got my current job. I've never not cared about teaching and helping my students to learn. Now, I'm giving them assignments and trying to teach them, all while trying to ignore the diegetic mantra of apathy in the back of my mind. I'm not giving up, but I'm certainly not exceling, either. The malaise of a lingering pandemic, coupled with the seemingly-endless path of pain and misery that will paint over half of 2021 has left me feeling beleaguered and despondent. Yes, I have my highlights, those things which keep me going and helping me along. I got my second COVID vaccine, for example, just earlier today. But I hate seeing Gayle hurting; I hate to see her scowl with the effort of combatting her nausea or whatever current discomfort is afflicting her. I hate to see her struggle to get work done during her "good days" as she tries to do two weeks' worth of grading in three days. I'm tired in a way that no amount of sleep can ameliorate, because it isn't a physical tiredness. I'm weary in my soul and sick of trying to navigate by the silver linings that creep through the darkness. Well, at least I have something approaching a final destination to look at. End of July… …it can't come soon enough. "I cannot live, I can't breathe Unless you do this with me." --Angels and Airwaves, "The Adventure" I've been reluctant to write an update on how Gayle's doing, partly because I have learned that (much to my surprise) people are actually reading these posts and that's kind of embarrassing, and partly because the latest development is unexpectedly hard for me to process. The poison they're pumping into Gayle's body has claimed her hair. Massive handfuls of her already-shortened red hair choked up our bathroom's drain. She has hidden what remains beneath a cancer wrap, both to keep the shedding from getting everywhere and to keep her head warm. On 25 January--three months and five days after she first got her diagnosis--we shaved it all off. In an act of solidarity, our thirteen year old also had me shave his red hair, turning our family from two-fifths Weasley to just a bunch of mouse-brown blokes and a couple of monkish aspirants. We're trying to take it in stride--Gayle is adept at this sort of thing, no doubt deriving from her typical generosity and optimism--and we're trying to let things not feel too heavy. After all, it's just hair, right? Except… A day or two before Gayle's second round, the hair loss began, so it wasn't as though it was a complete surprise. Nevertheless, it was something that we continued to hope wouldn't happen. Among all of the other trials of having chemotherapy, we're perpetually crossing our fingers for a better outcome than the typical experience. And since we've been disappointed on much of these experiences (Gayle's response to the toxins isn't the worst that it could be, it's still much harder on her than we had desired), there was a clinging glimmer of optimism that, at the very least, her gorgeous red hair might be spared. In anticipation for this possibility, Gayle had her hair professionally cut and styled, then sent away her hair to a custom wig-maker so that, in a few months, we'll have a wig made out of (mostly) her own hair. She can use it in the future to make a wig for her Queen Elizabeth I cosplay, thus obviating the need to sleep on curlers the night before the Renaissance Faire. Definitely a lemonade-from-lemons choice, in my view. Her new hairstyle--which she only kept for about three weeks--was chic and spunky. Gayle didn't really see herself maintaining the look in later years when her hair grows back, and I quietly agreed with her. In the manner of beaten honesty, I was kind of relieved that she wanted to grow her hair back to whatever length she had before. Among the many uncomfortable and undesired lessons that having my wife pass through defeating breast cancer is the one that showed me that things look differently when one is going through the difficulty rather than watching someone else do it. From the outside, worrying about what happens to her hair seems trite and trivial, particularly for a lot of guys (or, at least, those who aren't terribly concerned about being--or becoming--bald). And some women don't care too much about the Great Chop, knowing that it's immaterial to survival and that it will grow back. But it's diminishing of a person to dismiss a large, visible component of who they are with a sniff and a wave, saying, "It's only hair." Yes, it is only hair, and it is also an actual, physical part of the person. And while I'm only speaking for myself specifically, I know that this was not an easy choice for Gayle to make. I know, because the day before she decided to buzz her head, she needed me to be next to her after she'd shampooed her hair. She needed some support for when she removed the towel that was hiding how extensive the loss was. I know that this matters to her, because she lamented that now she looked like the Cryptkeeper from the old Tales from the Crypt TV show (I'm assuming she wasn't referencing the comics on which the show was based). I've known Gayle for the majority of her life. We met when we were juniors in high school, back in 1999. When we started dating, I felt like I was Peter Parker being told that he'd just hit the jackpot with a real-life Mary Jane Watson. Gayle's red hair means a lot to me, and not just as a matter of attraction. Gayle isn't her hair any more than she's her smile, but it's still a component of who she is. And the cancer has already removed parts of her--literally, in the form of the lump that was extracted, but metaphorically, too, in the form of her career, her hobbies and passions, and even her parenting/partnering. Cancer, as one of my friends said when I first announced the diagnosis, sucks the air from the room. It is an avaricious, vicious, vacuous entity that drains in life and pays back pain and heartache and death. What happens when I see Gayle now is, of course, my beautiful wife…but I'm also seeing a trauma. Her short hair, her baldness--it isn't about the aesthetics of her beauty being maimed that hurts my heart and makes me glance away. It's the visibility of the scars being carved in her body and soul that cut the air out of my lungs. In seeing her scalp's skin I am shown what cancer wanted to do to her--to scythe her, to take her away. Much like the exclamation mark on my oldest son's chest that tells me to remember what he went through--what we went through--to keep him here, Gayle's baldness shouts at me how real the pain is for her, how constant the nausea, how endless the exhaustion, how frustrating the fog. It reminds me with the casual glances that my own complacency with coping is not something that we share. And when I'm off at work or focused on something else, I'm not "dealing with chemotherapy". It shows me that she has a burden that I cannot carry for her, no matter how hard a truth that is to recognize. So it's just hair--or baldness--right? Right. Except that it means more to me than that. And seeing her eyes diamond with tears because she has lost that part of herself is not something I ever wish to see again. I included the lyrics from "The Adventure" by Angels and Airwaves as my bumper for this essay because, outside of hymns, I don't think I've cried at a song as often as I have with this one. Tonight, while strumming the simple chord progression on my guitar and caterwauling (I dare not call what I do singing) my way through the song, I was hit by this phrase. I burst into tears and fumbled along for a dozen or so measures, unable to sing or even really open my mouth until the moment passed. It felt like it was the mantra that is going to get us through this trial. It sums up my own truth--I can't live, I can't breathe without Gayle--but I think it also shows that we can live and continue on our own adventure, provided we do it together. And that's the hope. That these visceral reminders of what she's going through on her own--the days lying abed, the baldness, the constant balance between medicines and foods and rest--will move from this omni-present and into a dim past. As Dave Matthews sings in "#40": Tables turned again and you my friend That's what I'm trying to get to--those days when we can sit and laugh at the hard times that we got through because we're with each other.
Always. "What if I wanted to break?" --30 Seconds to Mars, "The Kill"
I've postponed writing this particular update for a handful of reasons. Some of them may be obvious (the insurrection at the Capitol on the day Gayle started her chemotherapy) while others may not be (see below). But now that it's late morning of Sunday, I feel I can perhaps distill the events and my response to them. To begin with, Gayle is doing…okay. The first two and a half days were really bad, though she seems to be returning to her normal self. I'll get into the details in a moment, but if you're only interested in the "How is she?" question, the answer is that she's steadily improving, though we don't know what that will continue to look like (obviously). So there you go. Extra details: We went into Gayle's chemotherapy appointment on Wednesday morning. I am currently teaching a Dungeons and Dragons Winterim (a three-week intensive course where we study one topic for the entirety; this year, I'm working with students in learning and about, playing, and developing tabletop role-playing games), so I had to arrange for some substitute help to ensure that I would be able to go with Gayle to the oncologist's. My school has been really helpful and supportive, thankfully, so I was able to be there the entire time. Well, kind of. Thanks to COVID-19, I was only able to be with Gayle during the conversation with the doctor (covering ground that we were already pretty aware of, and answering a handful of questions that had cropped up since we'd last sat in the exam room) and the run-down of the procedure with the nurse (who explained what the doctor had just told us). Once the educational part was over, I had to leave, meaning that Gayle was on her own through the actual process. That didn't make me particularly happy. Very little about the pandemic has made me happy. Having to go through cancer treatments during the pandemic has left me even less happy. (To cope, I bought a discounted video game for my PlayStation 4. Retail therapy ftw.) They estimated it would take ninety minutes to two hours to go through the process, which is the "A" and "C" of cancer treatments. (The Adriamycin and Cytoxan regimen will last for a total of four sessions (one every two weeks), followed by four rounds of Taxol (on the same schedule). The hope is that this will put us into the end of April when she finally fishes all of the treatment. After that is radiation therapy.) Since I couldn't be with her during the ministration, I got in the car and headed home. We only live about twenty minutes away from the hospital, so it felt like the best use of time. Unfortunately, I realized that I had forgotten to pick up Gayle's prescription on the way home, a realization I had the moment I pulled into the garage. Cursing my own stupidity, I pulled out and headed to the pharmacy. It didn't take too terribly long to get the pills. However, as I was headed into my neighborhood, I got a text from Gayle saying that she was almost done and I could come get her. So, I turned around and headed to the oncologist's office. I only had about ten or so minutes before she came out, looking like the angel she is and, to all appearances, just fine. The port that they had installed worked well and there hadn't been any real problems. We thought about heading to Provo to pick out a wig for her, but then she decided we'd better eat instead. I drove us to Chick-fil-A and before I was even halfway home, Gayle was feeling the effects. She ate half the sandwich, then faded. While I didn't have to carry her (a fortunate thing for both of us, as my upper-body strength leaves a lot to be desired), I did have to help her up to the bed. Soon thereafter, the migraine started. We're not sure what, exactly, triggered the headache. The Red Devil (the nickname for the chemo)? The antinausea medicine? A combination? The intravenous treatment or the pill? We still don't know, though it was a pretty rough twenty-four hours. Gayle was curled up, her face scowled in pain, unable to even speak loudly enough for me to easily hear her. She couldn't sleep--which is saying something--and I ended up having to contact the on-call doctor to get permission for her to take ibuprofen. She wasn't eating, and swallowing pills made her even more nauseated. The next morning, I had to get to work. Despite the fact that she was feeling so rotten, I helped to bundle her into the van and drove her to her mother's house, which is where my boys go to online school during the week. (Have I mentioned how unhappy the COVID-19 pandemic makes me?) She spent that day wracked with pain and scarcely eating. I contacted the oncologist and got a different prescription, if only to try to see if the Zofran was what was causing her the pain. After school was over, I picked up my family and headed home, dropping off Gayle and the kids before going to the pharmacy. This ended up being a good choice, because everyone, it seems, stops by the pharmacy on the way home from work. I was in line to get the pills for about 45 minutes. Once home, we switched pills. The headaches faded. The nausea returned. Exhaustion--a fatigue so profound that she needed me to spoon-feed her a bit of apricot pudding--came with it. Friday morning came and I once again helped get everyone into the van, as I was leaving Gayle with her mom for care while I was at school. That afternoon, I contacted the oncologist to request yet another antinausea pill, as the second one wasn't doing a very good job and Gayle honestly looked like breathing was a pretty involved task. They set me up with another medicine, which I picked up that evening after leaving the family at home (another 50 minute wait). People have been really generous and made sure that the family always has something to eat in the evenings. Though I can cook (pretty well, I think; I had a really good teacher), it's been nice to have one less thing to worry about during this time. Gayle lost eight pounds in four days, so having some food at the ready to feed her has been a godsend. As her appetite has returned, her energy levels have also bounced up. She spent 45 minutes or so downstairs with the family during dinner time last night, and watched her boys as they played video games. Then she returned to her bed. She's sleeping better now, and we're trying to stay on top of her antinausea medication. I text her (or she me) when she takes the pill, to give us a running catalogue of when she's been medicated. Sometimes her body aches and she gets dizzy walking from the bed to the bathroom. Baths every day seem to help. She's starting to feel like herself again, albeit a weakened and still fragile form. What that portends for her returning to work and how we're going to navigate the first half of the year isn't clear. Part of the reason I'm trying to be as detailed here, in terms of events and side effects, is to try to keep track of what we can expect. Still, there are unknowns: What caused the migraine? Is that something we can obviate or is it just what we need to gird ourselves for? Why is the nausea less potent? Was it the new pills? Was it her body finally rebounding? What will the cumulative effect be of the treatment on Gayle specifically? Will she have time at work during these first two times, but by the time we hit the fourth treatment, she'll be incapacitated the full two weeks? How do we get her vaccination for COVID when it becomes available if she can't drive herself anywhere? These and many more keep rattling around my brain, which leads me to my own look at how this is affecting me. As many of you know, I have dysthymia, which is a type of clinical depression. I've been using Wellbutrin for a couple of years (I call them my Patronus Pills) to help keep my darker thoughts from grabbing me as often. They're effective (I think; Gayle says she's noticed a difference), but only to a point. And if there weren't so many things to do, I probably would have sunk more often than I did. (I say this, but we're barely four days out from her first treatment; this week has been the longest, worst week I've had in a decade.) All that being said, I'm not doing well. I've been using every coping mechanism I can for over ten months as the pandemic has dragged on. Now my coping strategies are simply my existing strategies and I'm wearing them out from overuse. I've been able to get more writing done this year than I expected, but I don't know how long I can maintain that. Writing is cathartic and it is taxing, and sometimes my brain is so fried from school, tracking how Gayle's doing, and taking care of the boys that the only thing I'm able to do is play video games in the evenings. The house is a mess, with boxes strewn all over the place, heaps of Costco items on the floor, wilting flowers in vases, and a perpetual detritus seemingly everywhere. I can't really summon the energy to do more than the bare minimum--keeping the dishes and laundry going feel like Herculean tasks--and my attention while reading is on the wane. There's nothing that I dislike more than seeing Gayle in pain. Being with her during the births of each of our sons was wonderful; seeing her recover from each was an agony, particularly the first one. She doesn't normally get sick, so I don't see her laid up in bed all that often. Seeing her so miserable hurts my heart, and a heart can only sustain so many blows before it cracks. On Thursday night, as I gathered the boys around the table to eat our dinner while Gayle rested upstairs, I offered the typical mealtime prayer. As I asked God to help my wife, I broke down in tears. All three of my children came around the table and hugged me. My oldest said, "She'll be okay." "But I don't want her to hurt," was all I could choke out. After a few minutes, I managed to regain some composure and we ate our meal. I'm not okay, but I'm trying. When I get tired, I think of my friend Dustin Simmons and how he always manages to find a well of resolve when it comes to helping others. It gives me a boost to push through my own selfishness, to try to assist the family. Unfortunately, that only extends so far (e.g., not to picking up the house). Fortunately, others are out there who are willing to make up the difference. So, even though I may want to break, I have ways to prevent that from happening. I hope. "She sees love where anyone else would see weeds / All hope is found, here is everything he needs" --Five Iron Frenzy, "Dandelions"
I'm once again sitting in the waiting room of the same-day surgery at our nearby hospital, trying really hard to be confident and hopeful. We just watched The Empire Strikes Back, so I guess, in honor of Master Yoda's familiar instructions, I'm not trying to be confident, I'm failing at it. Gayle is moving forward with the chemotherapy treatment. Today marks the first step, as she has come back to her breast surgeon to get the chemotherapy port installed on her right side. (I wasn't aware of what that was--oncology hasn't been one of my areas of light study--so for the uninitiated, this is a surgically-implanted conduit that allows access for the oncologist to easily extract blood for testing and injecting the sundry toxins that comprise the treatment.) Her acres of gorgeous hair will be carefully cut off next week and sent to a wig-making company in California where they will do their best to keep some of what she has viable. Silver-lining this, Gayle pointed out that she has always wanted to have a Queen Elizabeth I wig so that she wouldn't have to sleep in curlers before every Renaissance Faire. Now she'll have that wish. And, of course, the dreaded and dreadful chemotherapy itself will begin next week. The end of the calendar year always means that the resumption of the school year is hard on its heels, so there are all sorts of conflicting feelings that are rushing through me right now. It's rather hard for us to focus on that, which is definitely a problem for me: I'm teaching my thirteenth Winterim, a three-week intensive course that my school offers. This year, I'm teaching a course on Dungeons & Dragons and tabletop role-playing games. I'm not particularly looking forward to it, though for no other reason that this upcoming trial is consuming any abilities I have to get excited about something. I'm normally ready for a Winterim, having been prepping it off and on throughout the year. This time, however, with COVID and cancer, I haven't been very engaged with what I need to do next. Every time I try to picture what the class will be like, I am left feeling empty and confused. How am I supposed to balance helping Gayle and doing my job? More than in November, when there were so many missed days of work, I can't offload my never-taught-before class to someone else and expect progress to happen. Not only that, but the students have only this one class--five hours a day--to do. Me missing one day is the equivalent of them missing an entire week worth of class during a normal day. Gayle is struggling with her own schedule, too. The school district she works for is wanting details about when she can come back to work, how long she'll be gone, and other things that we simply don't know. There are a lot of question marks in our immediate future, making every imaginary construction crack under the unknown. Because of this, I'm getting more and more enwrapped in my distractions. This is a common coping mechanism for me: If there's something outside of my control, the way I "don't worry about it" means "find something else to focus on". Today, for example, we needed to be at the same-day surgery office by 4:00pm. I spent the morning writing a bit in my current novel, reading, trying to get my 3D printer to work correctly, doing the dishes, and essentially finding anything that pulled my brain away from what was to come. While I'm confident that lots of people cope this way, it definitely made me feel like I was almost trivializing what was happening, not taking it serious enough. The difference between these surgeries is immense: The first was to remove the tumors, effectively making Gayle cancer-free. This one is to ensure that she stays that way. There's always a risk with anesthesia, surgeries, and the taking of medicines, which means that there's always a low-slung current of worry that eventually short circuits my brain. With everything that's gone on--both globally and within my family--it's hard to keep the empathy high. That isn't to say that I'm not doing my best to help Gayle feel comfortable and confident. Rather, until the day-of, I'm having a hard time remembering what's next. It sounds shallow and selfish, I know. Then again, if I keep dwelling on everything, I don't know how I'll be able to convince myself to get out of bed in the mornings… Anyway, the doctor has spoken with me and said that Gayle is doing fine and I can see her in the recovery room soon. I imagine we'll be getting home pretty late, if last time's experience is any guide. (It's kind of sad to say, but it seems like I have a routine now, one of seeing Gayle off to the OR, then sliding out to get myself something to eat, then rushing back to the hospital and eating in the parking lot, hoping that they don't call me with some sort of accident or emergency that unfolded, then sitting and typing away on my blue-keyboarded Surface until the surgeon comes in before having to wait again to see her.) Though we're not finished with this unwanted journey--not by a long shot--I'm feeling slightly better about what's going on. Or, at least I was, until I heard a story on the radio about an older couple who contracted COVID. While the husband survived, his wife did not, and the idea of a loved one slipping away while on the other side of a glass barrier was enough for me to fight back a rising well of panic. Sometimes, I guess, public radio isn't the best choice one can make. Well, I am hopeful, albeit cautiously so. I worry that hoping too much will jinx it--which is strange, since I'm not actually a very superstitious person--and there will be some new complication, some new bump in the road. I don't know where this road ends, but I'm praying that it goes well. My wife is just like the one described in the lyrics I posted at the top of the post: She sees so much beauty and hope in the weeds of this experience. She's scared, of course, and has spent plenty of time weeping. We both have. Nevertheless, she's choosing the harder pathway in the hope of having a better, longer future. She really is a remarkable woman, and is everything I need. "Then a woman said, Speak to us of Joy and Sorrow.
And he answered: Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be? The deeper that sorrow carves into your being, the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven? And is not the lute that soothes your spirit, the very wood that was hollowed with knives?" --Kahlil Gibran, The Prophet I start this difficult post with words from the criminally unknown Lebanese poet, Kahlil Gibran. My first exposure to Gibran came from a quote my grandmother gave one time, and his wisdom has helped me understand the world in a clearer way. At this point, I'm clinging to this idea that all will eventually be well… I should back up. Gayle's recovery from the surgery has been far better than we anticipated. Her body is still healing from being sliced open and parts removed, so it isn't any surprise that she's in pain, even a week later. However, the pain has never been so intense that she's needed to rely on the narcotics the doctor prescribed. This is really good, as Gayle's interactions with these heavier drugs have left her nauseated. Managing the pain with Tylenol and ibuprofen has been its own little miracle. We met with the oncologist on Friday afternoon. When we first met with him, he explained that because it was such a slow-growing cancer, he didn't think that chemotherapy would be a necessary option. Our plan was to remove the tumor and treat the site with radiation for a few weeks. However, despite the success of the surgery, the tests indicating that Gayle was at low risk for the cancer returning, and all of the other positive steps forward, there were two factors that, upon review, changed the oncologist's mind: The size of the tumor and the fact that it had spread to one of the lymph nodes. None of the other lymph nodes were cancerous, which is a good thing. Nevertheless, the best chance we have for preventing cancer's reunion tour with Gayle's body is to ensure that every potential cell is killed off. Despite our earlier plan, Gayle will be starting chemotherapy at the beginning of the new year. Gayle is, understandably, quite upset. She's sad that she won't get to teach her students as much--that's one of the things she's most upset about--and the worry about how much this is going to affect her overall health is high. After all, Gayle's pregnancy never went smoothly, with her being really sick for at least half of each one, if not longer. There is a correlation between the side effects of chemotherapy and women like Gayle. With our second child, Gayle ended up with so much enamel erosion on her teeth from frequent talks with the porcelain throne that she ended up having nine cavities that had to be fixed. But it's more than just the inconveniences of the side effects, or the larger trials of losing her hair and not knowing exactly how we'll schedule our work around the chemo. It's the feeling of thinking one thing only to have that turn out to be completely wrong. That sounds petty. I understand that science isn't a precise science, that prognoses and projections are only as accurate as the amount of data available in the moment, and as more data come out, those prognoses and projections can change. There can be a lot of reliable information and assumptions, sure, but there's always a caveat, an asterisk that needs to be kept in mind. I, however, failed to notice the asterisk, instead investing my hopes in the earlier predictions. See, the lump was almost three centimeters (for those looking for specifics, it was 2.8 cm) and the cancer had spread. Though they extracted all of the cancerous cells, the surgery alone only gives Gayle a 79% chance of surviving the next 15 years. By adding in the hormone therapy that we were planning on, it increases Gayle's survivability by six percent. Radiation will bump it up a little, too (the doctor didn't have a percentage for that part of the calculation). And chemotherapy? It adds a 4% likelihood of survival. By taking all of these actions together, we get almost a 90% chance that the next decade and a half will close and Gayle will still be cancer-free. Four percent doesn't sound like a lot to me, particularly when I'm having a hard time seeing past the half-year or so of chemotherapy that Gayle will go through. An immense amount of hardship for such little reassurance is hard for me to swallow. The prospect of losing Gayle to something preventable, however, is much harder to go along with. And yet… Part of this stems from how we depict cancer in our media and how we talk about it as a society. Chemotherapy is associated with emaciated people, weakly saying goodbye as their families sob by their hospital beds. It's in stories of tear-filled moments as clumps of hair fall out of the cancer victim's head. It's the boogeyman of our medical system, only slightly less ominous than the looming bankruptcy that many people (in the United States, at least) struggle with on top of the trials of treatment. Overcoming those emotional responses to the news has been really hard for me. Gayle's trying to be optimistic, pointing out some of the more positive things that we'll get because of this. One silver-lining, she says, is that we won't have to worry about her hair clogging up the drains or choking the vacuum for a while. While true, these aren't enough to balance the scales. This year has been a misery for the entire world, forcing all of us to find comparative comforts rather than any sort of real closure. There have been two other times in my life when I felt that I had reached a low-point that was this abysmal, and they were in 2007 and 2010, during which time we had to fight to keep our oldest child in this world. Our half-hearted warrior is still with us and is fumbling through teenagedom and online learning--a blessing that I know I take for granted, and proof that things can turn out for the best. Aside from those moments, my greatest struggle has been my own battle with dysthymia--a minor thing when drawn against heart surgeries or chemotherapy. So when Gayle makes her silver-lining observations, I have a hard time relying on them as anything more than comparative consolations. We call silver-linings in the night sky stars, but navigating by starlight doesn't banish the darkness. So there's your update: We have to let the doctor know this Tuesday if we're going to accept his recommendations and swallow our fears of the process. I don't know why we wouldn't. Returning to Gibran, though I do believe this will be the fire for our future cups of wine, I'm still struggling with why we must. "You are before everything in the long line of
Everything that brings me joy. You are first, You are water to my thirst. You are my favourite." --Shane Koyzcan, "Favourite" Today is a day that has been both long and short in coming. To recap: We first learned about Gayle's cancer on 20 October. We managed to get in to the surgeon's pretty quickly, setting up lots of appointments and plans in rapid succession. We had to stall in early November because the genetics test was pending, with doubts about it arriving in time to guide our decisions about whether to have a lumpectomy or mastectomy (or double-, perhaps). However, because of my untimely bout with COVID-19, we had to push back the surgery again. Thanksgiving (and COVID recovery) prevented us from any other surgery date, bringing us at last up to today. As I write this, Gayle is about halfway through the operation that will remove the lump from her left breast. Thus far, it's been a lot of hurry-up-and-wait: Yesterday, Gayle was given the instructions that she needed to follow. Because she had to come to the hospital fasting, she had a bowl of cereal at 11:30pm last night, then some water at around 2am as she scrambled to complete as many mask orders as she could before having to shut down for a while. Her appointment was set for 11:15am, and so--as I think most people would--we were at the hospital by 11:00am. There's always a bit of paperwork and the sense that you simply want to give yourself plenty of time for things like this. We took a quick selfie in the parking lot before walking in. We were brought back to a curtained pre-op waiting cubicle a little after 11:30am, where the questions that Gayle had already answered digitally on the hospital's website were asked again. (These same questions were then asked subsequently by every person who worked with her. I am certain there's a reason for this duplication--I just don't know what it is, as it kind of makes me feel like our answers weren't really listened to.) After getting into the paper clothes familiar to all hospital visitors, a nurse came in to try to find a friendly vein in Gayle's arm. Her veins are notoriously difficult to work with; they're as difficult to pin down as a politician and like to squirm out of the needle's way whenever someone gets close. As a result, she hates having to get IVs, shots, or blood drawn. Normally, she tries to drink a lot of water to try to help get her veins to stand out; unfortunately, she can't do that while fasting. Still, the nurse managed to get the IV in with relatively little difficulty, and though it was uncomfortable, Gayle was set up for the rest of the day's operations. The next phase was waiting. Lots and lots of waiting. Gayle needed a seed (a small, radioactive marker) put into her to help with the operation, but the nurses accidentally forgot that she was supposed to be taken to radiology at 12:45pm. It was after 1:00 when they finally showed up. I sat on the immensely uncomfortable, basically pad-less chair, waiting for Gayle to come back while reading a Brandon Sanderson wiki to remind myself what had happened in the first part of Oathbringer (which I stopped reading back in 2018, I think, so I was fuzzy on a lot of what had happened). I read. And read. And read. I finally finished my recap-read just a few moments before Gayle returned from radiology. Her worry about the IV now out of the way, this was the part she was most concerned about, but she came back smiling (I'm assuming; we're both wearing breast cancer awareness masks) and in pretty good spirits. We got her transferred back to the bed and waited some more. Our original timing for the beginning of the actual operation was 2:00pm, but due to this delay, the breast cancer surgeon didn't show up to talk to us about what we were doing until after 2:30pm. By the time we'd finished our pre-op conversation, it was almost 3:00pm. I walked with Gayle down the short hallway; they gurneyed her to the right while I headed straight to the general waiting room. It's been just over an hour, now, and so far, no news means good news. Hungry, I puttered over to a nearby JCW's, paying too much for the burger and waiting for too long in the drive thru. Nevertheless, I got back to the hospital before an update even came through. So, now I sit in the empty waiting room, watching the golden-orange sunlight slant through the large windows as this wintery day comes to its close. I can see the snake of traffic slither up and down the street, chatting with the nurse behind the desk. (Her daughter, she was quick to tell me upon finding out that I teach English, is a recent English grad from UVU and is struggling to find a job.) I find solace and distraction in words and slam shut mental images of Gayle on the OR table with the worst happening. _______________________________________________________________________________ Eventually, the doctor walked through the door to explain that everything went well. Here are the details: Our biggest concern was that the cancer had spread into the lymph nodes. There wasn't any evidence to suggest that it had corrupted more than one that was visible in the ultrasound, but we knew we wouldn't get a perfectly clear picture until the actual surgery. The surgeon explained that they did extra four or five extra nodes, which came back negative for any cancer. The tumor--which was about the size of a half-dollar coin--was extracted. The only wrinkle they weren't expecting was that they had to remove some of the muscle, as the tumor was quite close to it. The doctor doesn't foresee any problems stemming from this, nor were there any other unusual problems. While I felt like it went really long, it was within the two hour window of expected time to wait. After about half an hour, I was sent to the waiting cubicle. Gayle was curled up in her familiar position (she's an all-sides sleeper for the most part, but she prefers to sleep on her right side), though ashen and sickly looking when I came around the bed to see her. She slowly worked her way through to consciousness. I held her hand and she gave it a squeeze. Some Sprite through a straw helped undo her dry mouth, though, mysteriously, they also gave her saltine crackers to give her stomach something to work with. Strange choice to go along with dry-mouth side effects. I read a few pages, but for the most part I just watched her, seeing the precious pulse on her throat and the steady rise-and-fall of her breaths. I ran over to the nearby pharmacy once they'd faxed over the prescription for pain meds, but otherwise I spent my time next to Gayle, helping her along as best I could. Though steadily deliberate, we got to the point of Gayle standing up enough to dress. I let the nurse wheel her to the exit while I got the car pulled up, heat churning. After strapping Gayle in and bundling her beneath her excess jackets from her backseat collection, I drove her home. We arrived at about 7:30pm--the entire day had been spent at the hospital. I helped her into the house, planning on navigating the stairs with her, only for her to insist on taking the couch. I helped to get her settled there, gratefully received a meal from a caring neighbor, and even fed Gayle a bit of cinnamon-sugar toast before slipping off to the store to pick up some more medications that we still needed. Now I'm writing these last words in this update. I have a lot of feelings, but they're mostly of gratitude for her safe-passage through the surgery and a hope that all will continue to be well. I am immensely grateful to all who've prayed, fasted, good-thought'd, and positive vibed toward Gayle at this time. She is my all and everything, and though it hurt to see her in pain, I'm relieved that the cancer-bomb silently ticking away in her chest has been defused. Here's hoping that the rest of the recovery goes as smoothly. "Do you have the time / To listen to me whine / About nothing and everything all at once?" --Green Day, "Basket Case"
It has been a while since I last updated everyone on what's going on in the Dowdle household. There is a pretty big reason for that: One week ago, I came down with COVID-19. Since then, not only have I had little energy or desire to write, but we've been dealing with the fallout of that reality as best we can. Additionally, I've been putting off writing this update as it's supposed to be about my wife's battle with breast cancer, not my journey into being another statistic of a failed pandemic response. However, as there are a couple of new particles of information with regard to Gayle's treatment, I decided that now, while I have the stamina to do so, I will go ahead and make another entry. We had originally scheduled Gayle's lumpectomy on 13 Nov, then pushed it back for a week when we realized the genetics test wasn't going to be coming back in time. (We are still awaiting the results on that test, by the way, which means we made the right choice--for a couple of reasons--in postponing the surgery.) We have now rescheduled the surgery for 4 December, since we're dealing with my new problem. And my problem is just one on top of a whole cavalcade of rough news for my extended family: I mentioned in the last update that we were awaiting a biopsy for my niece's thyroid. The test came pack as positive for cancer, meaning that my sister-in-law, Gayle, and my niece (who is only twelve) are all battling cancer. My sister-in-law's surgery happened on Election Day, and the doctors don't see any other cancerous cells. They're confident that they got it all, so we celebrate that good news. Gayle's MRI that was done last week also looked good, with no additional tumors visible in her right breast. My niece's prognosis is still formative, but she definitely is going to need surgery. [From here on I'll be talking about what's been going on with me, so if you'd like to stop here, I understand.] So when I started to feel gross back on the 8th, I tried to convince myself that the sore throat and crummy feeling was my biannual response to the change in weather. It was snowing, after all, and had been all day. After such a mild autumn, it was to be expected that this new change in weather might do as it has always done to me: Make me feel lousy. Not only did I not want to think that I had COVID, but I was also one of the most diligently cautious people I knew. I kept my distance from everyone at school, not even rotating to different classes during the break (I walked in tardy to every 5th and 7th period). I always wore my mask, kept close to my whiteboard, showered and changed my clothes immediately upon arriving home; we avoiding going to stores, dining out, or being anywhere with lots of people. We listened to the livestream of Gayle's grandfather's funeral rather than attending in person; we stood far removed from the rest of family when we arrived at the graveside service. In short, we did everything that we could to keep this very thing from happening. That and my own naivete about what was happening to my body made me think that maybe it really was just a sore throat due to the weather. Alas, it was not to be: This past Monday I awoke feeling worse with a slight fever. I texted my administration and put some of our contingency plans into motion so that I could teach remotely. I managed to get through my morning section of classes by having the students work with me through a Google Meet. I didn't have the strength to do the same for the afternoon class, but my coworker who teaches the same curriculum was able to absorb my students into her class (as safely as can be done, I should add) and give them a similar lesson. Tuesday saw me feeling sick, still, but able to teach my morning class. I had my COVID test scheduled for one o'clock, which I thought would give me enough time to get home for my afternoon classes (which begin at 1:45). Unfortunately, Utah's testing capacities aren't necessarily in top-notch form right now; by the time 1:45 came around, I was still stuck in line. Fortunately, I had my phone with me, so I taught the lesson in the car, with the substitute helping out (he had seen my morning lesson and was able to replicate on the whiteboard what we had done earlier). It was…certainly something that happened. I tried to have a positive attitude about it, but it was one of the less thrilling lessons I've ever taught. I managed to get home in time to teach the second half of the lesson as I'd done before, which was nice because it made the lesson feel a bit more complete. The next day (Wednesday) saw me back in play for my whole school day. I had set up substitutes on Monday when it was clear that I wasn't going back to school this week, so I had a plan that was going forward well. I telecommuted to work, taught my classes, and felt pretty okay. I was still sick, but it wasn't that bad. Probably just the seasonal sickness. We'd isolated my middle son in his bedroom and sequestered our heart warrior son in the basement. Gayle and our youngest took up the middle floor. Our family was together but completely separated. It was precautionary, but both of the younger boys were feeling kind of sick, so…method to the madness, as 'twere. Anyway, after the school day was over, I was sitting in my bedroom, tapping away at my drum set, when Gayle poked her head in. "How are you doing?" she asked. "Not okay," I said. I started to cry. "I'm not okay at all. I don't know how to handle this. I'm so tired of all the news that we get is bad news, and the only good news is comparatively good." I could tell that all Gayle wanted to do was come in and give me a hug--but she couldn't. So far as we knew, she had yet to contract the virus. She needed to maintain space as much as possible. I sat in my bedroom, alone and comfortless. Later that night, we sat outside (still masked) to have a less-strained conversation. Gayle, in her typical, optimistic way, assured me that it would all turn out okay. My wife, who has breast cancer, was comforting me about it being all right in the end. She really is a remarkable woman. Thursday morning came and my doctor's office called me. That was when I knew that the test had come back positive. I highly doubted they would call me first thing in the morning if I were negative. Sure enough, that was the news. The nurse gave me a litany of things to do, almost all of which we were doing already, and then asked if I wanted to talk to my primary care physician. I said no, since I didn't even know how to process it all. I mean, I was assuming it was COVID and, at the same time, assuming it wasn't. I had done everything in my power--short of quitting my job--to keep my family safe. How could I be the one to bring death into my house? I did what most millennials do: I posted to Twitter and Facebook the three words no one wants to write: "I have covid." Sympathies and incredulity washed in, with lots of expressions of condolences and well-wishes. It was only when an internet-only friend--a fellow from New York whom I started following on Twitter for the simple reason that I liked his handle (it was an allusion to Coriolanus, which is unknown enough among non-Shakespeareans that I knew he was a fan of the Bard)--asked how I was doing that I lost it. By that I mean, I began to have a panic attack. My breathing became hitched and shallow, my sobs choked me, and I couldn't convince myself to stop. In that particular moment, I was fairly convinced that I had killed my son. Gayle came up to see what was wrong--what was specifically wrong, I should say--and saw me curled up on my bed, weeping my heart out. She tried to talk to me, but I wasn't hearing her very well. I felt a familiar, deeply-missed hand on my back, and rather than take comfort in it, I did something I've never done to Gayle in my life: I screamed at her. "Get away! You can't be in here! Get away!" I'm not proud of what I did. It isn't how I normally treat my wife. But at that time, I felt like I was a latent killer and I couldn't stand the thought of what I was doing--against my will--to my family. Gayle retreated, likely recognizing that her presence in my bedroom was making the situation worse. After a few minutes of breath-choking sobs, I finally regained enough composure to send a text to my administration, letting them know that I was positive and that I was in no mental shape to take over the classes that day. I had two or three more panic attacks throughout Thursday and Friday. Sometimes they would hit me out of nowhere and I would begin to cry. Once it happened when I was on the phone with my mom, who had to hear my heart breaking without being able to do anything more than listen. For the most part, I've tried to keep myself occupied--Netflix or Twitter or video games or books--but it's all been the kind of hollow distraction of deliberately fooling my mind into thinking about something else. Friday saw me in the worst shape thus far: Around midday, I got hit with a powerful bout of nausea. I don't think anyone likes throwing up, and I certainly hate it. I try really hard not to puke, even when my body is really convinced it needs to. I actually imagined a dialogue to my guts, telling them that I hadn't eaten anything, so the sickness wasn't in there. "Nothing to throw out, guys. Seriously, there's no need to puke!" My body didn't listen to me. I vomited painfully, off and on, for the next five or so minutes, with a thick ooze of sweat prickling my body. It drained me, though I admit to feeling a bit better when it was all done. By then, COVID had taken my sense of smell and taste, so at least I didn't have the nasty stink of vomit-breath to deal with. I bathed, then returned to bed. Thanks to my sister-in-law and mom, we got some prescription medicine for me to help beat back the nausea, as well as getting me some electrolyte-laced drinks to keep me from being dehydrated. The next day, we pulled out my son's pulse-oximeter, which we've had since he was born. It isn't always the most accurate machine, but we thought it would give us a sense of what my O2 saturations might be. I started checking myself regularly, only to see my sats dropping pretty regularly. At one point, it claimed 85, which is too low to be healthy. I called Telehealth and talked to a nurse, who was not happy to hear about the levels. She recommended that I go to the ER so that they could perform a chest x-ray and maybe get me some oxygen. By this time, Gayle was already at the hospital for testing of the two younger boys, so she had to drive them home, then head back to the hospital to drop me off. She made the round-trip drive to the hospital a total of four times in about forty-eight hours. She is absolutely the glue that's keeping the family together at this point. I walked into the ER alone--Gayle wasn't allowed to come with me--and I did what I've done for the past eight months: I scoped out who was where and how I could maintain distance from them. It was different this time: I wasn't worried about them infecting me; I knew that I could infect them. I got checked in and sat down as the shrill, miserable cry of a newborn baby emanated from a baby carrier in one pocket of the waiting room. Oh, how I remember the dread of being in an ER with my baby, anxious and fearful and beyond knowing what's next. I had only this small, comparative comfort: At least it was me in that room, instead of my own child. The nurses and doctor all treated me compassionately and (for a non-emergent ER) quickly, assuring me that my sats were actually fine (94 to 95) and the chest x-ray came back clear. I was grateful for that reassurance--though now I'm not so sure I can trust our own pulse-oximeter--and soon enough I was home. That brings us up to right now. Gayle's feeling worse--a coughing fit of hers awoke me in the middle of the night, and she is in a lot of pain from having to sleep on the couch for the past week. Our oldest has been transferred to his grandparents' basement in the hopes that will keep him further from harm (though the possibility we sent a vector of disease into their home hasn't left me; nevertheless, he's not feeling any symptoms at all, so I'm taking as much comfort from that as I can). We're awaiting the confirmation of what we already suspect--everyone else in our home is infected--but we won't know that for a while yet. Gayle doesn't have her results to her genetics test, though I imagine we'll get those tomorrow. She won't be seeing her students again until January (her school has gone to all-online for two weeks, then she's going to be going into surgery and recovering, so she won't return to her classroom until 2021). I wish I had some sort of optimistic reading on all of this, but it's all been extraordinarily difficult for us. Our boys are being great sports, for the most part, with our youngest living in his small tent in the family room with the middle child perched in his bunkbed, surrounded by books and his iPad and Nintendo Switch. We can say that we're surviving this. And maybe that's about as optimistic as I can honestly be. "O time! thou must untangle this, not I; / It is too hard a knot for me to untie!" --Viola, Twelfth Night
The radio silence on Gayle's treatment plan comes from a number of shifting components that are only slightly settled enough for me to feel a new post is warranted. This has been one of the more difficult "hurry up and wait" moments of my life. When Gayle and I last were confronted with hospital news, we had time to process: Our oldest was still in utero when we learned about his heart problem, and there were months between when we started down the path and when we finally had to face the chaos of newborn surgery. While I don't recommend that way of becoming a parent, there was, at least, a bit of breathing space and time to process what we were about to go through. The timeline between Gayle's diagnosis and her first surgery was originally only about three weeks. That may be enough time for some people to come to grips with their new reality, but in our case, it has been draining. Tests, doctor visits, plans, and reschedules are all swirling about us. In some ways, that has been a blessing. We found out about Gayle's diagnosis on 20 October, sixteen years and one week exactly from when we got married. We met with OBGYN to learn precious little else, save that we received a referral to our surgeon, Dr. Tittensor. Our appointment day was actually supposed to be today--a day to remember, remember, this fifth of November--when we would learn what the surgeon was hoping to do. Faithful readers know that we were rescheduled to 27 October to meet with the surgeon, bumping up our timetable significantly. This was definitely a relief. Learning that it was a slow-growing cancer that might not even require a mastectomy was a load off of our minds. However, there were caveats to the prognosis, so we held off on holding hope too tightly. Before we left Dr. Tittensor's office, we had a surgery planned for 13 November. Our speed outpaced our knowledge, however: Gayle had her blood drawn only yesterday--the same day as our first visit with our oncologist--and was told that it could take as long as twelve days to get results back on this test. The reason this matters is because, though we are almost positive we won't need to move into chemotherapy to beat this (it's a slowly-growing cancer, so chemo would probably do very little against it), we are less certain about whether or not a lumpectomy is sufficient. That test will show us whether or not Gayle is genetically predisposed toward cancer, which would dictate the need of a mastectomy--or even a double. If you're looking at the calendar, you may have noticed that twelve days from yesterday puts us past the 13th surgery date. While it's certainly possible that we will get results sooner, we're running a chance that the information won't arrive by the time of the surgery. So we decided that we'd move back the surgery. "Well, Steve, why don't you just go forward with the earlier date and cancel if the results don't show up in time?" Well, random questioner, the reason's a matter of logistics: If we wait until the 13th and do have to reschedule, the earliest opening will be sometime in December. The chance that the test will come back negative is real, but it seems like an unnecessary risk. Better to reschedule by a week (our current surgery date is now 20 November) than to ignore Treebeard's advice by being too hasty and run into harder decisions down the road. Better to choose with the most amount of information possible than step down a dimmer path. Of course, it can be difficult to wait on important news (remember, I'm writing this two days after the 2020 election and, despite one candidate having over 3 million more votes, we don't know who the winner is yet), but waiting through the entire month of November for the surgery is a very large strain on our mental health. To say that 2020 is a hellacious year is an insulting understatement. Everyone is suffering from the general malaise of the pandemic and the poisons in the body politic. In our case, however, the dizzying whiplash of societal adulation for our hard work in the spring to the furious, demeaning demands that we put our lives at risk for our livelihoods really took a toll. When it became clear that the citizenry should expect no statewide economic assistance would be forthcoming, so the babysitting aspect of teachers became our sole benefit to society, neither one of us took it very well. Add to that the stress of being a high-risk family in a state that continues to believe, despite burying over 500 Utahns who started the year with us in January, that COVID-19 is a hoax, mask-wearing a capitulation of freedoms, and that science is as mercurial and subjective as opinions--well, it puts another strain on our emotional stamina. Mix together all of these different components (not forgetting her sister's thyroid cancer diagnosis, our niece's need for a throat biopsy to check for the same, and the burial of her grandfather, all of which happened in the past week) and it might make sense why we're feeling a tug to take care of whatever we can as soon as we can. But it also might help explain why we're feeling a touch risk-averse, too. So that's the current situation: Gayle is still running through the gauntlet of tests (she had an MRI scan today, in fact), awaiting results while juggling her responsibilities to her students, her school, and her family. Crossed fingers, vibed goodness, and prayed petitions all point toward getting a negative on the pending test. If that goes well, then the next stop is the scalpel. We're really hoping that turns out to be the case. |
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