"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. |
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