"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. |
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