cancer

Live(r) Your Life

Deb Zuroski, , , , , 2 Comments

I’ve spent so much time in hospitals that I have that instant clarity of meeting an old acquaintance and falling into conversation as though you’ve never been apart. No matter which hospital you are in, the smell, the sounds, the directions (follow the arrows for elevator E, bring your ticket for validation, show your ID to enter the building) are basically universal. 

And yet, despite that deep familiarity, there are things I always forget – the way patients wait for hours, the texture of the food, the unique kindnesses of the support staff, the emotions that fill the air, leaking from various open patient doorways – grief, panic, fear, acceptance, relief. 

Roomie 1, the OG, had already been in the hospital for a week when I arrived. She was angry, her mood emanating from her like a toxic gas. I celebrated her return home for her benefit and mine. #2 roomie was very elderly, stuffed into my room for the night for observation. She’d fallen out of a car and was pretty banged up. Roomie 2 was beloved by her family. She had so many phone calls and visitors that I wanted to remind them that she was supposed to be resting – and so was I. But she wasn’t even there 24 hours so I left my bitchy comments on my side of the floor.

My third roommate, let’s call her Marietta because that couldn’t be farther from her real name, arrived from another high monitor unit in the hospital. She was very sick. The hour was late. Her care team was with her into the early hours of the next morning. There’s no privacy in hospitals so, since I couldn’t sleep, I listened to the conversations. The staff talked to her, asked her questions. She frequently didn’t know what was going on, wasn’t aware of some of the care decisions that had been made. 

At some point, I was able to put together enough pieces to realize that she’d been unconscious, unable to consent to some of the care she received. We were in a high-monitor surgical oncology unit so it’s not that surprising. Things come up during surgery. My care team and I went through the major decision forks that could appear so that they would know what I wanted before the anesthesia was administered but that isn’t always an option. 

Eventually, her care team left for a few hours but the doctors round early. They arrived to talk with her before the sun was above the horizon. The discussion was one I’ve experienced. Hospital familiarity can be reassuring – sounds and codes don’t make me anxious but there’s a certain food served in the cafeteria that I can’t smell without feeling a cold sweat on my forehead. 

Anyway, she asked when she’d be shut of all the bags she was wearing. If you don’t know anything about these, just google ‘ostomy bag’ and you’ll have a general picture. Since Ken had colon cancer, I know quite a bit about ostomy bags because he was supposed to get at least one. While I sat in my curtained-off alcove, the doctors explained that she was entering palliative care. 

Have you any idea what it feels like to be sitting on your uncomfortable hospital bed, no headphones, unable to easily move around because you have four brand new and very sore holes in your abdomen, and nowhere else to go anyway, listening to a young doctor tell the unseen woman beside you that she is dying and there is nothing they can do to stop it? He kept saying “let’s focus on making the time you have left as pleasant as possible.” I know he meant well. I do. I had forgotten, perhaps on purpose, that this is another part of being in hospitals. 

Ken’s care team would use phrasing like “keep him comfortable” and “most potential for extending his awareness.” I wanted to go through the curtain and ask her if she understood what they were saying, though I could hear her tears. I also wanted with an all-consuming passion to be ANYWHERE ELSE. There are no exits from a locked unit but if I’d been allowed to walk unaided, I might have become a human ISS, traveling the unit hallways for the foreseeable future. 

We weren’t friendly, exactly. It’s hard to become even acquainted with one person (me) constantly resisting the connections that the other (her) continues to offer. We talked a little bit, occasionally. Each time I struggled with a task, she’d make strange offers of assistance – and what exactly are you going to do to help me, occupant 2 of Room 899B? Your care team won’t allow you out of bed so quit asking me if I need help. 

Because I can’t help you. I can’t.

I took many walks with a walker or when I could manage it, just holding my IV octopus – I had five active lines. Basically I was constantly tangled in or tangling things, some of which hurt when you tug on them. There was a young man, later 20s probably, taking the same walks I did, though he had a single room and wasn’t guilt-walking the corridor to hide from his terminal roommate. Like I said, it’s a surgical oncology unit so unlikely he was there to get a bunion removed. His gait was better than mine. He’d been walking longer. We’d pass each other on the route. There was little maneuvering room so occasional clipped wheels were common but we never spoke. 

Eventually, I’d have to return to my room. There’s no place else to go – bed, sitting upright, or chair, also sitting very upright. Marietta would launch a possible conversation grenade at me and I’d answer briefly before muttering about a nap or a sponge bath. In the early morning hours of my last day, we were both propped up in our spaces as the hospital began to come awake. “Can I say something?” she asked through the thin barriers of our privacy curtains. 

“Sure,” I said, sure that she was going to comment on her life or my evasiveness.

“Your daughter ….” She paused a moment. “Well, she’s beautiful but that’s not even what I want to say.” I heard her fidgeting. “You’re lucky. She’s wonderful. And I can tell that she loves you very much.” 

God help me. I wanted to cry, was determined not to cry, didn’t cry. I am so very lucky. She’s right and I know it. My children are amazing. Mostly, I asked them to stay away from the unit. We spent so many months, painful, traumatic months in hospital rooms. They did not need to see me beside a woman who is the living embodiment of their dad’s illness and future death. 

I thanked her and was quiet again. There aren’t good words to tell a dying woman that my blessing isn’t her curse. There are almost no good words to say to someone who is dying. When I left later that day, I walked around the curtain to meet her. She’s older than I thought, looks vaguely like a well-known comedian. Her hair, short like mine, is a vibrant color, startlingly against the hospital bed. 

When I spoke, she said, “Oh, you’re the woman behind the curtain.” 

I nodded and held up two unopened water bottles I had left. “You want my extra water?” I asked her. 

She smiled at me, her eyes tearing up again. “Yes, thank you,” she said. “Go. Live a joyful life.” Marietta waved her arm above her head like she was cracking a stage coach whip before a team of horses. “Go now. Live.”

Much love. 

Live(r) Your Life

Can St Anthony Tile?

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I woke up crying this morning. It happens. I’m trying to shake it off but I’m not having much success today. (I almost typed that I’m not having as much success as I would like but let’s examine that language for a moment — who has more success than they would like? Possibly the ALS when they raised more than $115 million in 2014 via the deeply misunderstood ice bucket challenge. The idea was to pour cold water over your head OR donate to ALS (or another charitable org) but people really enjoyed pouring water over their heads for some reason. And they still gave to ALS in huge amounts which I guess is a rare example of social media encouraging a trend that did some good. Sir Patrick Stewart may be one of the few people who actually understood what the challenge was about. You can check out his glorious response here.) 

Anyhoo, as my mom would say, I was crying because I was having a hospital to hospice dream in which Ken was mad at me for being “emotionally unavailable.” That fight did actually happen. I wrote about it in the blog at some point. The dream was, as dreams often are, unfair. Ken didn’t accuse me of being emotionally unavailable. He accused me of “having already moved on,” basically waiting for him to die. It hurt then as much as it hurt via last night’s dream. 

Don’t try telling me that he didn’t mean it. Of course he meant it. He was the master of saying exactly what he meant. He had a PhD in Rhetoric; and even in the final stages of his illness, he was brilliant. However, it is important for me and our children to remember that the person who loved us, the person we’d known so well, was not the Ken we lived with for the last year of his life. He was changed by his illness and treatment. Medication, pain, anxiety, grief had turned him into someone who was often, usually, unrecognizable. 

Sometimes, he was cruel. Sometimes, he was sodden with grief. Often, he was bitter. We don’t talk about *that* Ken very often. In fact, we all work hard at remembering the Ken we knew best. It’s easy — so easy — for the final stages of illness to erase the memories that we want to keep, to replace those memories with ugly treatments, angry words, fearful thoughts, nightmares, things left unsaid, things better left unsaid, last words, regrets. 

Years ago, I was shopping somewhere with my kids and they found a banana slicer that they were desperate to buy. I said, “We have one at home; it’s called a knife.” They haha’d and begged for that stupid banana slicer but I held firm. You know what’s coming, though, don’t you? Ken had already bought one. He saw it online and thought it looked useful. That’s the Ken we like to remember. Yes, I still have that banana slicer which I have not, to this day, ever used. 

I know you are all enthusiastically awaiting an update on my grout DIY project. I am too. 

Just kidding: I worked on it last week until my $4.59 diamond-tipped grout tool broke … twice. Ken always said we should use the right tools because it makes the job easier so I decided to borrow my long-suffering BIL’s oscillating multi-tool but he let me down. Dude doesn’t own an oscillating multi-tool.

So, as soon as my wonderful houseguest moves into his new apartment, I’ll be back (with the Terminator vibe and Arnold’s muscles) to continue the DIY grout removal with a brand-y new Dewalt oscillating multi-tool and the carbide blade. Now, unfortunately, I’m going to have to do more DIY’s that require this particular tool — what’s that saying? Oh yes. I remember. If all you have is an oscillating multi-tool, everything looks like a grinding project. 

I have one very big problem to resolve with this re-grout. When handyman dad tiled the shower with those big square granite tiles, he didn’t leave enough room to grout the space where the wall and floor meet. So, here I am, scraping his half-axxed grout job from the corners and trying to figure out how to put grout in between the wall tile and floor tile. 

If I were my mother, I would send a quick prayer to St Anthony (the finder of lost things — and in my mom’s opinion that included ideas). Not that I doubt St Anthony’s abilities but I think I’ll start with r/HomeImprovement. Reddit, as a whole, is pretty toxic but the DIY subs have helped me enormously over the last four years. 

In other news, I have seen the issue proof for 34 Orchards November edition. GAH. It’s gorgeous. I seriously do not know how I will survive the wait. Haley’s story looks fantastic and so marvelously creepy.

It’s time for dinner. Last night was beef stew with carrots and potatoes and warm rolls. Tonight we’re doing chili and skillet cornbread. Can you tell it’s fall here?!

Enjoy the last week of October. Next week, everything changes.

Much love.

Can St Anthony Tile?

Third Anniversary

Deb Zuroski, , , , , , 1 Comment

All day long I’ve tried to write a gentle, loving note to honor this horrible third anniversary of Ken’s passing but the only thing in my head is an anguished cry of grief for my best friend. “Why are you gone?” are the words bouncing around in my otherwise empty head. 

Why are you gone?

I can’t laugh about how irritated Ken would have been by our isolation. He — the man who never went out without first strategizing all the reasons why we could stay in — would have chafed at the restrictions, not because they aren’t necessary but because anything, once denied, is that one thing that we long for most. If he had lived, he would be one of the most at risk and we would have been far too protective of his health, which would have irritated him even more. 

Why are you gone?

Tarriona “Tank” Ball, of Tank And The Bangas, once said, “There’s some areas of New Orleans where the storm has never passed.” I think about that a lot, and not just in reference to New Orleans. Recovery, resilience, isn’t a solo activity. It requires support; for me, it requires support from the one person who can no longer give it. Ken would have loved the eclectic poetry of Tank And The Bangas’ music. He would have been the person to say, “I have a new artist for you to hear.” He would have known about them before they were famous and would have celebrated their success as though he himself had discovered them. He would have been impatient with my grief, would have hated that I’m crying as I type this.

Why are you gone?

Today, a red-headed woodpecker sat on a tree branch outside my window. He climbed the trunk like a squirrel and pecked for a bit. Sometimes it was so loud, cartoonish, like the Woody that many of my generation grew up watching. Sometimes, it was a quiet tap, as soft but insistent as the tree branch against the glass when the wind blows: tap, tap. I feel his presence in everything and nothing. Sometimes, like that woodpecker, he seems to shout in my head but when I most need him, the only shouting is my own. “Why are you gone?” 

Dear god, why are you gone?

Third Anniversary

Chicken Tender Sammies and Other Kindnesses

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If you came here for an uplifting “we’ll get through this together” post, I recommend that you leave now. We can all pretend that leaving a blog unread is like opening the conference room door, realizing that you’ve accidentally joined the wrong meeting and scuttling out, embarrassed but, at the same time, grateful that you didn’t sit down. If, on the other hand, you aren’t sure why you’re here, welcome; I’m not sure why I’m here either but we’ll be here together. Some days, that’s all we can ask for. 

Over the course of my life, I’ve spent a lot more time in hospitals than the average healthy non-healthcare-employed person does. There’s a quiet rhythm to the experience. You figure out how long you’re allowed to be with the patient. You pick up on the hospital routines. You learn how things like food, testing, room temperature, and parking work. After a while, if you are there long enough, you get to know the hospital workers and sometimes they get to know you. 

One time, in the midst of Ken’s illness, the lady working the register in the cafeteria looked at me and said, “You’ve been here a lot. Lunch is on us.” Since lunch was usually 2 or 3 hard-boiled eggs and an iced tea, it didn’t cost the hospital anything, really; but I remember the experience and the way it made me feel — a small “I see you” kindness. I made a similar connection this past week. In the hospital cafeteria, very late in the day, I asked the grill cook if I could have a bun to make a chicken tender sandwich. He looked at me and said, “Shh. I am making you a ‘burger’.” And then he proceeded to make me a chicken tender sammie with melted cheese, fresh lettuce, and tomato slices. Honest to dog, I nearly cried. I was so tired and so sad and there he was being gently kind. I told him how much it meant to me and he just smiled and said, “good.” 

I readily admit that I am flailing blindly through my life, no self-burn intended. If life is a series of plans fulfilled, my life has been a series of, sometimes intricate but more often simple, plans made and then discarded because of … everything else. 

More than half of March has been just that. First, I was knocked askew by some sort of non-COVID-19 respiratory illness. As I’ve mentioned before, I have moderate-to-severe asthma. I can go weeks without needing my emergency inhaler but a respiratory illness usually means a daily puff or two for me. With this recent illness, I used more than 50 doses in four days. It was as bad, if not worse, than epiglottitis. At least with that, my throat just closed entirely and I didn’t have to ask myself if I needed hospital care. (Okay, so, actually, even that time, I didn’t go to the hospital; I went to the urgent care facility. They panicked and called an ambulance … but that’s a whole ‘nother story of me being stupid.) The point is that, if I get COVID-19, I’ll be one of those people who takes up a hospital bed.   

Shortly after I was back on my feet, someone very dear to me was hospitalized for a completely unrelated reason. I spent the next 11 days living by the hospital rhythm, dozing through the night on ridiculously uncomfortable chairs or curled, knees tucked, on “sofas” clearly designed for very short people. While all this was happening, the world was shutting down. New protocols were being implemented every day at the hospital. They limited visitors to one person at a time and I started to worry about being banned altogether.

Because I was spending so much time at the hospital, I didn’t do the usual shopping and had a bit of a list when I finally had the opportunity to visit my local Costco. The things we needed were readily available (please don’t tell my dogs that there were only 4 bags of dog food left at the store!) but I’ll confess to being surprised to see people pushing two carts, one with six or eight cases of water and the other with stacks of other shelf-stable things like bleach, vinegar, 25 pound bags of flour and rice, sugar, pasta. I knew about the pandemic but I did not expect the hoarding. 

Over the years, we’ve had students from Nepal, Sri Lanka, The Maldives, and Bolivia stay with us and all of them have asked to see the glorious abundance of our grocery stores, something they’ve heard about but never experienced in their own countries. Yet, here we are: hoarding toilet paper and bottled water. I don’t understand hoarding generally but I’m especially puzzled by the bottled water. Are people expecting a complete breakdown of our infrastructure? Or are they panicking because they lack basic information about what to expect? I fear that it is the latter.

Since we’re distancing, we’ve started cooking more elaborate meals, with my daughter usually taking the chef role. Over the last several days, we’ve made meatballs and sauce, chicken pot pie, pork stew (heavy on the veggies), cottage pie, and pizza, homemade crust included. In addition, we were treated to a delicious roast, a gift from a friend. 

We’re liking the family meals in the midst of all the crazy. We’ve always been close but as we hear people “joking” about how much they dislike their families, we feel so unable to relate. Tonight, during dinner, we played (and cheated) at cards with alacrity and a great deal of laughter. Earlier today, we gardened and played outside. I am so grateful for the opportunity to be home with them. 

My son starts distance learning tomorrow. I think it will be a challenge to keep him engaged while I continue to work at my own job but I am reminded of my husband’s advice when our kids were little. He said that our role, as parents, is to create a love of learning. If we engage with our kids about the things that interest them, and we encourage them to explore those things, we create a world in which exploration is their reward. So, we’ll follow the distance learning requirements as best we can and then when we need a break, we’ll go outside and break geodes, dig in the dirt, watch bugs, and maybe take a walk or two. 

And if you start to despair, jump on Twitter (who would have guessed I’d ever say that!) and visit Sam Neill (yes, the actor) for poetry, BroadwayWorld for living room concerts, Earyn McGee for “Find the Lizard,” the Urban Birder for bird trivia and pictures, Steve Martin (yes that Steve Martin) for Banjo balm, and so many more. The more you physically isolate, the more opportunity there is for social connections, even for introverts like me.  

Stay safe. Stay home. Listen to the birds sing.

Chicken Tender Sammies and Other Kindnesses

Bedtime

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The house is quiet
Tired dogs kennel themselves
A reminder that sleep
Should be welcome.
Legs slip slowly into a
Heated-blanket-warmed bed
Otherwise empty of
Arms and legs.
Two pillows,
Only one needs to be fluffed,
Are propped at the head.
The desultory late evening
‘I don’t want to sleep
Until we talk about
One last thing’ chatter
Is absent from the room,
Missing from the house.
The once small space, the tiny bed,
Are a million times their original size
And I am cut in half.

Happy Valentine’s Day, my friends.

Bedtime

Something Wicked This Way Came

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Something happened last week. I can’t talk about the specifics and I’m not sure I would even if I could. My thirteen-year-old saw something, he said something, and he saved someone. He responded exactly as we all hope our children will and I’m utterly amazed at his courage, his kindness, his maturity. 

My boy did the right thing, perturbed that it might violate a trust, that it would be embarrassing, that it might alienate him from his friend-group, that he might not be believed (he had receipts just in case), that it would require action in a bystander world. He doesn’t want praise or attention; in fact, he told me that he’d like to pretend it never happened. I have to agree. What I really want is for my already traumatized child not to be more traumatized. If I could erase last week, I’d have to think deeply to find reasons not to do exactly that. 

I’m so angry and sad about the whole big mess. Absolutely everyone we needed was there. Everyone responded wonderfully. Everyone helped us. So, as my daughter would say, “What’s the T?” 

What IS the T? If you’ve ever read a management book (god help you), you know that some people seem to thrive on chaos. I always hope I’m not one of those people but it seems like I live in the midst of it. A good amount of my adulthood has been teetering on the brink of catastrophe. Why should my kids’ lives be any different? We are the ball in the pinball machine, pinging from obstacle to obstacle, lights flashing, bells ringing, until we’re hit by a paddle and thrown back into the chaos.

I wonder, sometimes, if trauma begets trauma, if some individuals — unknowingly, certainly unwillingly — are drawn, like magnets, to new and different tragedies … on repeat. If you believe in a god, you’ve undoubtedly heard that old saw:  God only gives you the burdens you are strong enough to carry. Boom. Not strong enough? No worries; prayer is the answer. You can just ask god to carry those burdens for you. Boom (again). For those of us who are less confident in the weight-bearing power of prayer, the solution is far murkier. And for both groups, the outcome is the same (with apologies to all of you who believe in the power of prayer).

My mom was a terrible Catholic (according to her) but she believed very, very strongly in the Blessed Mother. I saw a sign over the weekend that condemned “Mary worshippers” to Hell (the sign listed everyone who is condemned — it was a long sign and the sign-bearer was, of course, the only one not on the list). The Mary-worshipper label was a solid fit for Mom. Her favorite prayer was the Memorare. She used to talk to me about the meaning, about it being a sort of chastisement. It’s my humble and untested opinion that Mom was expressing what many women continue to express today — that longing for a voice — and that brings me to this past weekend.

I have absolutely no interest in football, though I did stand on the field during pre-game warm-ups once. That was an experience for sure but it hasn’t made me a fan. I can’t abide the lack of representation in leadership positions. Why are there so few owners or head coaches of color? I might not have known it was Super Bowl weekend, but as a Pittsburgher, I absolutely know who Coach Tomlin is. But if you cite him as your example, I’m just going to come back at you with the total number of coaches of color — single digits, folks. Single digits! You can’t explain that without using racist tropes because there is no explanation that doesn’t include racism. Period.

Anyway, my nephew teasingly called me un-American this weekend when he had to remind me that it was Super Bowl Sunday. I didn’t watch. I didn’t even know which teams were playing and I only know who won because of that tweet (don’t pretend you don’t know what tweet I mean). If you try to tell me it didn’t happen, I’m going to throw a certain George Orwell quote at you.

After I saw that there was a controversy brewing over the half-time show, I watched it on youtube. What I saw was two powerful women performing on national television, using their voices (yes, I chose that word deliberately) to highlight issues important to them. Okay … never mind. Nothing says manufactured outrage over “sexualized” dancing and “televised porn” like being publicly called out for ignorance and racism and basic inhumanity. 

My favorite our-educational-system-has-failed-us moment is when people began speculating that JLo was wearing the Texas flag. I LOVE teachers but I am appalled by our national lack of critical thinking skills and, frankly, by our ignorant, foolish, entitled Secretary of Education. Even with a research device in each of our hands, we eagerly retweet, post, share, and like garbage because it makes us feel (better, teary, powerful, righteous, smart — you choose). No, JLo (you know, from the Bronx?) is not strutting that national Venus-shaped stage in a Texas flag. This isn’t Texas shade, BTW, which you will also understand if you are using your critical thinking skills. 

Well, clearly, I’m still angry about the trauma my boy endured. I can hear it in the words I’m typing. The problem is, of course, that I can’t unleash my mom-rage on … anyone. I want to use my not-inconsiderable verbal skills to destroy the responsible party in defense of my baby but that won’t happen. There is no person responsible for this week’s near catastrophe. 

Researchers say that we look for someone to blame because placing blame provides “resolution” and “closure.” It’s tempting to look for somewhere to place blame and I’ve veered onto that dangerous road a couple times throughout this experience. It’s wrong, though, and I’m going to fight my baser self. As with Ken’s death, there’s no closure. It was unfair and it shouldn’t have happened. Period. 

On a good note: I’m working on another book. That’s two underway in addition to the one I just finished (in case you are counting). Neil Gaiman recommends juggling about 5 projects at a time and since I’d like to be as successful as Neil Gaiman (cough), I’m modeling my writing behaviors after him (cough, cough). It’s a teen/adult book which is a nice contrast to the middle grade stories I’ve been focused on. I’m not going to talk about the plot but I will say that it’s … weird. Honestly, there’s nothing more satisfying than giving my severe weirdness an outlet. 

Next up … a short story about Pennsylvania’s favorite Phil. 

Much love.

Something Wicked This Way Came