health

Did You Stock Up For The Storm?

Deb Zuroski, , , , , , , , , , , , Leave a comment

Moby’s “When It’s Cold I’d Like to Die” (sung by Mimi Goese) is currently playing in my ear. Although I’m conflicted about Stranger Things, their music director made fantastic choices, some that I had completely forgotten. The “official” Stranger Things playlist is a walk through my teens and early 20s. I hear a song and I’m suddenly in Florida, laughing in the heat, the sky that intense blue of a summer afternoon. 

I’m delighted to report that my article, “Are We Not Evil?,” published in The Third Annual, has been called “…that oddball postscript…typical of the ‘don’t-give-a-fuck’ approach [Frans de Waard] habitually adopts.” The reviewer, Alan Rider, from Outside Left Literature, goes on to say that the Annual “…is superbly executed….” You can read the full review here. If you still haven’t bought a copy of the Annual, text me or leave me a note here on my blog. It’s 250+ pages of underground, out-of-the-mainstream fun. Be warned, though, I only have three or four copies left.  

In a coffee shop that is nearly empty, two children are now sitting so close to me that they can, and have, bumped into me multiple times, because, as we all know, children have the spatial awareness of your average bouncy ball. I love children. And thus, I am pretending that I’m delighted they are sitting nearly on top of me. I refuse to make eye contact.

Save me. Mom and the little one have gone to the restroom. The older child has taken the opportunity to rearrange their seating thus that I cannot leave mine. I am, literally, wedged into the corner of the store by an 8 year old wielding a chair. 

After an hour or more of older child’s fidgeting, pencil dropping (a coordinated activity for annoying teachers when I was in grade school that apparently has not gone out of fashion), getting up for a cup of water, getting up for napkins to wipe up water, getting up to “just look” in the snack case, getting up to change leg positions, leaning as far over the back of the chair as possible in hopes of hitting me with a very long pony tail…I am finding their presence distracting. I’ve read the same paragraph at least 30 times. My computer has gone to sleep as I’ve repeatedly tapped SOS in morse code on the window pane. 

On the silver lining side, I’m getting a math refresher. We’ve been focused on the fives times table for nearly 15 minutes, a little too long, in my opinion. It’s time to move onto sixes. And sevens. Yes, that was a purposeful pop culture reference. Thank you very much. 

In other news, the boss (my doctor) asked me to lose 20 pounds but told me it would be difficult because I’m older than dirt postmenopausal. Challenge accepted. I’m down six pounds since our appointment. Ha, body, take that! It’s definitely not easy the way it used to be. I remember the “old” days, when I could eat chips and french onion dip for dinner and bounce out of bed the next day with the energy of someone who never lets unhealthy foods pass their lips. 

Tuesday was the weekly shopping trip for my cognitively declining friend. We used to try new breakfast places regularly. Now, our choice is based on “what’s most convenient.” I always say, “well, that would certainly be the focus if we were walking or taking a horse and wagon…BUT since we’re driving, we can go wherever we want.” They always laugh at that but still fuss about distance. So, we ate breakfast two minutes from Costco, but not inside Costco, so still a win. 

Ordering food is a challenge. They struggle to remember what they want and sometimes they order the wrong food. One time, for example, they ordered a reuben and fries; but what they wanted was a reuben omelet and home fries. How do they know they’ve gotten the “wrong” food? When they’re happy with their meal, it’s “the best food they’ve had in months,” every time. When they aren’t happy–almost always because they mis-ordered–they complain that it’s “hard to eat” or “doesn’t taste the way they’d expected.” 

I’ve learned! Now, before our server arrives, I ask what they think they’ll order. We’ve even gone over the menu to discuss whether any of the items–almost always omelets–are good. They’ve had all of the options so I can even steer them toward their favorites if they can’t choose. If they can’t remember their order by the time the server arrives, I jump in and say “You mentioned ‘X.’ Did you still want that?” 

My favorite diner, Pamela’s, eases the ordering confusion by always offering to make us the “usual.” Let me tell you; my friend LOVES that they have reached Cheers status. Even though they don’t know what their “usual” is, they’re always delighted to know that they have a usual and that Pamela’s kitchen knows what it is. And yes, it’s the same order every single visit: a well-done Greek omelet, crispy home fries, wheat toast with grape jelly, and hot tea with lemon. 

Their grocery list on Tuesday was written on a piece of paper slightly larger than a postage stamp. I’m not exaggerating, unfortunately. They couldn’t read some of the items on the list even with my handwriting decoding skills. It reminded me painfully of my MIL’s notes as she declined and my own mom’s handwriting as MS stole her hand function. 

Today, we went out again to “prepare” for the bad weather like we’re heading out on the Oregon Trail. First, we went to breakfast in Pittsburgh’s strip district. The food was good but they couldn’t find the honey for their tea–they couldn’t remember what it looked like. When I pointed out the honey packets, they put it on their home fries instead of in their tea. I’ve never had honey potatoes but they were pretty happy, which is really all that matters. 

Once we got to a very busy Costco, they insisted on shopping alone, as they often do. Usually, I check in to make sure all is well; but it was so busy today that I had a time keeping track, ultimately losing them entirely. Every time that happens, I wonder if I’m about to learn Costco’s protocol for when someone goes missing in their store. 

Be safe out there as the storm rages and don’t forget to check on neighbors and pets. 

Much love.

Did You Stock Up For The Storm?

Pancreas Goes On Performance Improvement

Deb Zuroski, , , , , , , , , , , , , , Leave a comment

Me: So, Pancreas, do you know why I brought you into my office today?

Pancreas: Is it about those vacation days I asked for? Because I’ve already bought the plane tickets. 

Me: Sigh. 

Me: First, as a pancreas, you don’t get vacation days. Because you are a PANCREAS. If you were the Skeletal System, we could talk about days off.

Pancreas: I work very hard.

Me: (sotto voce) And now we come to the crux of this discussion. 

Me: Are you entirely sure about that? 

Pancreas: That I work hard? Yes, I’m sure. Damn sure. There’s no harder working organ in this body.

Me: Okay. Okay. I think I should stop you right there, before Heart hears you. Or Lungs. Or Central Nervous System. Or Liver. Liver is working at full capacity even though it’s about half the size it was two years ago. Can you say the same?

Pancreas: Unfair. I cannot be cut in half. 

Me: (sotto voce) Well, you’re working like you were.

Pancreas: (suspicious) What was that? I didn’t quite hear you.

Me: I said, “I’m so cold. Brrr.”

Pancreas: (confused) You’re exactly 97.9 F. Perfectly normal.

Me: Right. Let’s get back to your performance. Can you explain your reduced enzyme output?

Pancreas: Resources are limited. I’m getting up there, almost 60 years old, you know. You had that surgery last year. It threw everything off. I’m tired. I need a vacation.

Me: Sigh.

Me: I assume you know that the heart is older than you are, by like 2 weeks. ANYWAY….

Pancreas: (makes raspberry sounds) Heart. Blah Blah Blah. All I ever hear is that Heart is better than me. Hmph.

Me: Look. Your enzyme production is down. Stomach and Intestines are requiring external enzyme support. I’m going to have to put you on a performance improvement plan. 

Pancreas: Oh yeah. How about I just quit? 

Me: Stomach and Intestines both think you already have. That’s why they’re demanding external enzyme support. Pancreas, this performance improvement plan is for your own good. If you don’t start making enzymes, you’ll be replaced entirely by enzyme pills. You don’t want that. You’d miss working. We’d miss your cheerleading at the daily stand up discussions. And your jokes! I’m still laughing about the hippo-zippo one you told last week. 

Pancreas: (a little teary) You liked that one? 

Me: I sure did. Do you want a tissue?

Pancreas: (nodding) I’m sorry. I’ll do what I can to step up productivity. I’ve just been feeling a little down. It’s the season, you know? You eat so much food during the holidays. 

Me: (angry face)…

Pancreas: Not that I’m blaming you. 

Me: Uh huh. Suddenly I’m excited to start taking those enzymes. (glares menacingly at Pancreas)

Much love.

Pancreas Goes On Performance Improvement

Still Coughing After All These Years

Deb Zuroski, , , , , , , , , , , 2 Comments

Years ago, when a friend and I were discussing religion, my friend asked me, and I’m paraphrasing here: What’s the point? She was asking me what’s the point of life if one doesn’t believe in God. This, I told her, this moment is the point. This time that I spend here, each moment, is exactly the point. We all get these moments, whether we believe in an afterlife or not. Sometimes, though, we forget to appreciate them.

Recently, I’ve had quite a lot of time to reflect on that and a variety of other memories that have visited and then flown from my brain. It’s easy to find time for silence when you can’t, in fact, do much speaking. I’ve been sick for nearly two weeks now, bacterial pneumonia, again, to the chagrin of myself and my children. We’ll see if the treatment is effective this time. It hasn’t always been in the past, though I have a lengthy infection to thank for my quick cancer diagnosis and treatment. And for that reason alone, I would be loath to complain this time.

Coughing is the problem. I’ve got fairly broken lungs – as any CT scan will prove – and there’s nothing like a good lung infection to kick off an extended coughing journey, one that often lasts for several weeks. My mother-in-law, one of the nicest people you could ever hope to encounter, absolutely could not bear to hear me coughing. Her beloved older sister, Mary, died of tuberculosis when my MIL was just 10 or so. It was 1935-ish and their family of 10 lived in a tiny apartment in NYC. Mary was 19 and tuberculosis, although on the decline, was an epidemic in the poor, overcrowded neighborhoods of NYC. Treatments weren’t cheap. Margaret’s father, Giovanni, cooked in a restaurant kitchen for 12 hours a day to earn enough to pay for Mary’s treatment. Unfortunately, he put his trust in a shyster who took the money without treating the TB. Mary spent the last year of her life in the girls’ shared bedroom coughing herself to death and Margaret, my sweet MIL, sat at her bedside, powerless to have any impact. 

Of course, with that kind of experience in her formative years, it’s no surprise that my coughing – pleurisy as some of my friends jokingly call it – would send Margaret into a spiral of despair. She never, ever stopped grieving her beloved Mary and hearing me cough regularly made her cry. If she were alive today, she’d scold me even now, while I ingest cough medicine and antibiotics. “Bella,” she’d say, with a sigh. She called all of us bella. Most of her conversations were sprinkled with Italian phrases like scungilli or scocc (from scocciari), which Google would tell you are insults. Coming from Margaret, with a twinkle in her eye and her finger gently shaking at you, being called a sea snail or a pest was loving and we all knew it. 

Anyway, she’d say, “Bella” or “Bella girl. You work too hard.” It wouldn’t matter to her that I’ve been sitting in this darn bed for 10 miserable days now, leaving it only for two doctor appointments and one essential visit with friends. She’d still scold, tell me to eat – like Mrs. Claus scolding Santa on the days before Christmas, “Eat, Papa. Eat.” – and ask me to rest more. I can’t imagine what she must have experienced as a small child, listening to her sister cough until she wretched. 

My grandfather also had tuberculosis around the same time. He was, however, a well-educated man in his 40s, living in Erie, Pennsylvania, rather than a child of Italian immigrants whose knowledge of English was poor, at best. Grandpa – Charles Park, or just Park, to most of the world – was sent to a sanatorium, like the one in Thomas Mann’s The Magic Mountain, although Grandpa’s was definitely less mountainous. 

My grandmother, Marion, became a woman of business, definitely out of desperation but also with a surprising acumen. Two relatives – I believe a great-aunt and my grandmother’s grandmother – moved in with my grandmother and her four children and somehow they made ends meet. My grandmother continued to work after my grandfather returned from the sanatorium. They needed the money. He was trained for the church, not much use if you’re trying to feed four young children, but he knew everyone, was kind and competent in his own quiet way; and he eventually found work making prosthetics and durable medical equipment. Because of his TB, he was never able to get life insurance, which they all laughed about because he lived into his mid-80s, far outstripping the actuaries’ expectations. 

My mother and MIL tested positive for TB their entire lives, though neither ever had symptoms. Perhaps their physical health wasn’t impacted but both of them lived with the emotional consequences of their encounters with TB. How could it not be so? Because of my own family history, I’ve been planning to read John Green’s new book, Everything Is Tuberculosis, but now doesn’t seem the most apt time for me to pick up a book about coughing. 

In other news, one of my darling nieces introduced me to a new song, “Word to the Trees,” from which I fear I will never recover. It is an absolute delight of a song, by whatever mike (yes, that’s the band’s name), and now has an important position in this girl’s writing playlist, though, so far, I’ve stopped writing to sing every time it starts playing.

It occurs to me this Memorial Day weekend that Abraham Lincoln’s Gettysburg Address should hold renewed meaning for us all as we, in this country, stand more divided than anytime since the Civil War. Perhaps, as we honor those who “…gave the last full measure of devotion,” now is a time to remember the rest of Lincoln’s speech and consider whether “…government of the people, by the people, for the people” can survive this current test of our own devotion or whether it will, inevitably, “…perish from the earth.”

Much love.

Still Coughing After All These Years

Scanning for Fear or the Fear of Scans

Deb Zuroski, , , , , , , , , , , , 1 Comment

I allowed scan-xiety to get the better of me. 

Most cancer patients – in news that will surprise absolutely no one – experience some level of scan-xiety. We remind ourselves not to worry. We deep-breathe before our appointments and sweat out the wait for our results. Some of us have nightmares. Some don’t sleep well for days before their scans. We bargain with ourselves and our gods, hoping against rational thought that our pleas will ensure that this latest scan will be clear. 

For a variety of health reasons that are not cancer-related, I have had many scans over the past 20 years and never really worried about them, until that first time, in December, 2023. Since then, I’ve had five or six additional MRIs (and that’s without counting the extra two I got in September). I’ve sort of lost count from the monotonous sameness of the experience, though, if I cared to, I could go back through my electronic record and count the results. 

The facts show, without elaboration, that I don’t currently have cancer. My liver resection and chemotherapy eliminated it. So, how did I allow scan-xiety to take over, to control my waking hours, my sleepless nights, my infrequent dreams? I honestly don’t know, though, clearly, I’m not alone in that experience. 

Part of me wants to blame my VeryBadCancerTM with its high (70-80%) recurrence rate but that isn’t fair to the many people with more common and more treatable cancers. They, too, experience the gripping anticipatory grief of scan-xiety. We’re a large and growing population of individuals who both hope and dread those quarterly, semi-annual, or annual scans. 

Every single time I get an MRI, I analyze the technicians’ behaviors, even knowing that they are not foreshadowing my future. Why, I ask myself, did the tech tell me that they hoped I’d feel better soon? I feel fine. Oh my god. What did they see on the scan? TAKE CARE? Why did they say that? It’s back, isn’t it? They’re wishing me well because they saw another growth. 

It’s relentless – the imagined pity, the casual humanity turned to sympathy by my overactive brain. It wasn’t so bad in September. Having just finished chemo, I assumed that the cancer would be, at least temporarily, beaten down. Something about these most recent scans, though, took hold of my psyche, shook me to my essence, encouraged me to dread, instead of hope.

Again, my scans were fine. I’m still hanging in, cancer-free, but it – the scan-xiety – cost me this time in a way that I need to remember. It cost me moments of joy and peaceful nights. It cost me in snapping, anxious words and absences when I should have been present. 

I am determined not to pay that high price again but it is so much easier to profess that goal than to apply it. The strategies are all in my scan-xiety avoidance toolkit: yoga, mindful breathing, therapy, exercise. The problem, you see, is that, like most people, I, and so many other cancer survivors, have a lot to lose. The difference between us and the average healthy person is that we have experienced the real possibility of an earlier than expected death. But, to quote Cordelia, “I think I like this little life, this silly little life.” 

It isn’t just the pain and discomfort of surgery and chemo and possibly radiation that frightens me. I’ve done that before – well, not the radiation. I know what to expect – even from the radiation, having watched my husband endure it – and I know I can do it again and again, even the vomiting, if I have to. It’s not the words that could be in any of our futures: incurable, inoperable, terminal, palliative. 

It’s the pain to be endured by my children, my extended family, my found family and friends – but most horribly AGAIN by my children – that really makes me fear my scans. My (adult) babies are strong and they love each other deeply. I know that, if, through some future scan, I receive my ‘notice to quit’, my children will support each other, will be ‘okay’ but I would give a lot to prevent them from enduring another parental cancer death. 

It’s a lot to ask and I’m not sure who, in fact, I would be asking since I’ve been, previously, very clear on my uncomfortable relationship with the possibility of an all-powerful deity who occasionally pops down to help you find your pen but allows a lot of kind, gentle, loving people to die of cancer every year. 

With all due respect to your beliefs, please miss me with the “God needs them” and “they were called home” business. I hope those thoughts comfort believers but they offer nothing to me when compared to the idea of my children having to stand by my bed, watching cholangiocarcinoma turn me yellow and poison my blood. I don’t know if God was present in the room when my husband gasped out his last. 

I do know, though, that my children were there, at Ken’s beside, and they suffered – and still suffer – from the experience of watching their father die after watching him fight to live. Since none of us know what the future holds for us, I am determined to embrace the lesson that this scan’s anxious moments taught me – I need not die before I’ve finished living. 

Much love.

Scanning for Fear or the Fear of Scans

I Thought I Was Olive Oyl

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I’m sitting next to a black lab puppy at the coffee shop. He’s being a good boy so I can’t pet him, which is a cruel, cruel fact of training one’s puppy. Still, I get to look at his delightful face so I can’t really complain. 

There’s a group of women directly behind me who are having a very girl-talk discussion of their relationships and it is MESSY. One of them just said she can’t wait for her frontal lobe to develop. (Same, girl) It’s very clear that they’re having far more robust sexual lives than I did at their age. Hehe Anyway, I am exhausted just from eavesdropping.

Want to hear the story of my scans earlier this week? After accidentally going to the hospital instead of their outpatient facility two blocks away, I got an MRI with and without contrast. I should have known it wouldn’t go well, given the awkward start. (First I accidentally went to the Cardiac MRI unit at the hospital, then I waited for 30 minutes to get checked in – which made me 15 minutes late even before I walked all the way back to the parking garage, drove two blocks, parked in another garage and went to the third floor of the outpatient center.) According to the staff, this happens a lot, which makes me think they need to work for a solution since we patients are too stupid to do it right. 

Anyway, I had my MRI. If you’ve never gotten contrast, let me tell you that you can feel contrast enter your bloodstream; it’s cold. So, when my MRI was done, I pointed out that I hadn’t felt the contrast, you know, in case they’d forgotten to do it. Well, guess what? They’d accidentally closed the IV connector on my arm and since it didn’t form a seal, the contrast leaked everywhere (and left quite a welt on my arm too). They cleaned off the whole MRI bed and we did round two. Luckily for me, I only had to repeat about half of it since the non-contrast MRI had been successful. 

We’re not done yet …. Usually, the tech announces when they add the contrast. Instead, I knew I was getting the contrast in my arm because it burned like a hot match held to my flesh. Burned and burned and burned. Meanwhile, I’m going through the announced instructions to hold my breath, and breath normally, and hold my breath, and breath normally. I’m trying not to pant while this stupid contrast is – in my head – stripping the flesh from my body. Then, suddenly, it’s over. The bed slides out of the MRI and I tell the technician that I didn’t know the contrast hurts because it never did before. 

Friends, it isn’t supposed to hurt. The IV needle was through my vein and pouring 10 ccs of contrast into my bicep, which had ballooned into a football. The tech called the radiologist who, after quickly checking the scans, said, despite the oopsie, enough contrast had gotten into my system. No need to do a third MRI. We all had a good laugh about my Popeye arm and I went back to the garage, back to the hospital, into their garage, and then down to the correct radiology unit for my CT. 

Again, my friends, we aren’t finished. I arrive in the waiting room and someone comes up to me: “Ms Zuroski?” That’s weird. Right? I say as much and the staff person tells me they’ve received multiple phone calls about me. About me? Yes, because, upon a second review, the radiologist determined that there wasn’t enough contrast and I needed a third MRI. Lol

Before that, they did my CT. Then, three – true story – three radiologists came in to look at my well-inflated football arm and determined that I would, in fact, survive to experience another MRI. And so I did. They had a hard time finding a working vein so I have a few extra holes in me today but overall it was a remarkably amusing experience. Sadly, my arm has since deflated. Perhaps I’ll try Popeye’s solution and eat a couple bags of spinach.

Don’t ask because I won’t have results for maybe 10 days. There’s a radiologist shortage. I’ll let you know the news when I know the news. 

Much love.

I Thought I Was Olive Oyl

Walking a Razor-thin Wire

Deb Zuroski, , , , , , , , , , 2 Comments

I’m at the coffee shop again, the second time in months. It actually feels a little uncomfortable today, though I can’t articulate why I feel out of place. It’s as pleasant as ever on this edge-of-fall day. The big garage door is open, a cool breeze rustling the napkins and my chemo curls. I usually shave my head with a #3 razor but lately, defying the chemo thinning and chemical damage, I’ve let it grow out a bit. It’s a touch silver now with a little flip at the ends, slightly flattened by the baseball cap my daughter insists I wear in the sun. 

The sidewalks are quiet today. Schools are back in session but since projects aren’t yet due, the students haven’t settled into seats at the back of the coffee shop to work while they talk in hushed tones about their assignments and the cute student in chem class. 

A few minutes ago, a young woman, early 20s I’d guess, came over to my table and asked me a question. It was somewhat hurried; I’m somewhat hard of hearing. I asked her to repeat her question. She said, with a touch of pink on her cheeks, “Do you have wired headphones I can borrow?”

I don’t, my friends. Like most of the 21st century, I use bluetooth headphones. We all know, however, why she asked the silvery-haired lady. I’m pretty sure she just generalized that I, being of an older persuasion, would still be using wired headphones. Next, someone will address me as ma’am and I’ll have to acknowledge that only mentally am I still 17 years old. 

There’s a couple just seating themselves next to me – 70s or early 80s, I would guess. He leans a little forward as he walks, his hands slightly behind him, knees bent like he’s learning to ice skate. He’s on his way to the counter where he’s to order his (probably) wife a small coffee. She emphasized the size to him, as though he regularly brings her a 20oz cup. Now, while he awaits her order, she sits quietly awaiting him, her sky blue sweater flattering the stark white bob of her hair. 

I’m splitting my time today among a synopsis for a novel I’ve been working on for months, a creative nonfiction piece, and this blog. Occasionally, I’ll stop for a moment to look at my peeling nails and wonder about the year’s journey. Mostly, I put it aside but every now and again, I’m struck by the difference between my expectations and the year’s reality. I spend a few anxious moments reminding myself that the cancer was all removed and sometimes touch my tender scars as reinforcement. As much as I disliked the constant poking and prodding, the pills and the appointments, I sometimes now feel like a tight-rope walker who is performing without a net.

The scans that I’ve been anticipating for a month are next week and then the usual wait begins. I’ve been working hard on addressing my scan-xiety but it’s there, despite my efforts. I tap my chest where that 7mm mass is located (right under my breast bone) and remind myself that I’m feeling better, more energetic and less sick. That must be a good sign, right? But that argument doesn’t really work for me since I felt fine while there was a cancerous tumor growing on my liver. I guess the point I have to learn is that the only thing I can control is how I respond to the “slings and arrows of outrageous fortune.”

For a time, I obsessively googled cholangiocarcinoma, looking for miracle cures, hope in statistics, comfort for the fearful, perhaps. What I found was statistics that you wouldn’t bet against (my cancer has a recurrence rate above 70% and is terminal in something around 87% of cases). Since that kind of searching did nothing to appease my anxiety, I decided to stop looking for hope in those searches. Instead, I try to remember to spend my free time relishing the moments I have, sitting on the deck with my daughter, teasing my sons with terrible dad jokes, playing with my dogs. I won’t – I hope – waste whatever time I have pining for options that I may not even need. I could be one of the 13% who survive past the five year mark or I could get hit by a bus on my way home from the coffee shop. 

I may have mentioned that I broke another toe about two weeks ago. It’s still swollen as a grape, not an image you necessarily wanted implanted in your brain but … hey … it’s already in mine so why not share with you?! I finally decided to call the doctor today because my walk to the coffee shop was painful. Can’t have my activities restricted by a stupid broken pinky toe. Unfortunately, I probably reinjured my plantar plate, which would be a bummer, but I’ll wait for yet another doctor appointment instead of opening up google to do more anxiety-causing research. The doctor asked if I got my foot x-rayed. HAHAHAHAHAHA Like I went to a doctor.

Two people just walked by with bouquets of flowers from the flower shop, Toadflax, just down the street. They hug and separate just outside the coffee shop entrance and one of the people comes in for a drink. The bouquet she brings with her is tucked into a little bag reminiscent of a flower pot. I want to take a big whiff of her flowers but I know they’re from a hothouse and have no scent. Still, the pink paper wrapped around the blooms complements the overall color scheme and adds a delicate air of elegance to this brick and wood establishment. More importantly, she’s clearly delighted with her purchase and isn’t that charming?

Much love.

Walking a Razor-thin Wire

The Lessons You Didn’t Know You Needed

Deb Zuroski, , , , , , , , , , 3 Comments

Bunnies abound (hehe) on our street. You can usually find them in herds of two or three though I personally prefer to call them fluffs of two or three. If I lived in Canada, I would be blessed to call those beautiful bunny groupings FLUFFLES. Is there anything more beautiful than that?

So, on to updates – so many since I haven’t been keeping up with the blog as much. First, my toe is healing fine. I apparently broke it – poor little toe’s second break – on the edge of a book shelf. Don’t ask. It’s complicated. I was stepping over something, swung my leg wide and … gotcha. No biggie, really. I don’t have much feeling in that toe. Although it hurt a bit when I banged it, I didn’t realize until it swelled and turned purple that I’d broken it.  

The colonoscopy went well, I guess. I slept through it. The prep was exactly what you’d expect colonoscopy prep to be. Drinking two 8 oz bottles of suprep – one of the foulest tasting liquids you’ll willingly drink – was much easier than consuming the theoretically lemon-flavored liquid in the enormous jug. The best part is that I don’t need a colonoscopy for ten years (yay). I went into this test expecting them to tell me I’d need yearly colonoscopies because I already have cancer. A very nice surprise. 

My MRI was good, no changes. My CT shows a mass on a lymph node that we’re going to watch over my next few scans. The doctor is calling that mass “schmutz;” but since it’s technically cancer-sized, we need to see if it grows. If it’s schmutz, it won’t get any bigger after I’m done with chemo so let’s all root for that. Lol

My 94 year old neighbor fell – while she was at the hospital for a routine test. I guess that’s good news embedded in bad news, right? She spent more than a week in the hospital with pins in her broken hip, and telling quite good stories about what an event it is to fall at a hospital. Being a healthy older lady, she’s doing pretty well and has already walked a fair bit. She’s in a rehab facility now, though she’s expecting to go home this week. 

I’ve been visiting her and all I can say is: Everyone needs a patient advocate. Hospital personnel are usually lovely but they have very limited time to explain things so if you aren’t pushy (patient advocates are pushy) you won’t have any idea what’s going on with your care. They don’t introduce themselves when they come in. They often don’t articulate exactly what they’re going to do and WHY. And they tend to treat elderly patients as demented and infantile. My neighbor is neither so when I’m there and care workers come in, I ask pushy questions like: what’s your name? What are you here to do? Why does she need that? Since I’m a neighbor, not a relative, they shouldn’t really pay attention to me but they don’t even ask who I am. They just start talking. 

In another of the “things that you never thought you’d need to know” category, chemo nausea is remarkably unpredictable. Recently, on our way to shop for food, my daughter and I stopped at the Italian ice stand. She got custard; I got a wild cherry ice. Then, we rushed home because I was suddenly incapacitated. No shopping occurred but after the anti-nausea and anti-diarrheal meds started working, we were able to make dinner with the minimal supplies left in the house. Slight exaggeration: we actually have food in the house, but if we did need to shop later in the week so the dogs didn’t mutiny.

I’m so dehydrated, a ridiculous problem to have, that I’m required to drink at least one Liquid IV every day in addition to any other liquids I can force down. It’s annoying, given that I’ve always been a voracious water drinker. Now, it just doesn’t taste good so I’ve got a whole bevy of options to whine about. Right now, I’m choking down a strawberry-flavored Liquid IV. It’s so sweet I’m shivering a little from the taste. The lesson here: don’t become dehydrated in the first place. 

Much love. 

The Lessons You Didn’t Know You Needed

The New Jello Diet

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My dreams lately have been odd versions of working in an office or a restaurant or somewhere else that might have previously been a place of employment for me but dreams cloud facts, making it unrecognizable. I suspect my subconscious, so desirous of returning to actual industriousness, has given it to me when I’m asleep. Mostly, when I awaken, I remember only shards of those dreams, the sharp pieces of half-remember stories that cause an ache in my midriff that might be connected to those now-healed robot holes. 

It’s okay, though. I know that I’ll remember this year as the year of chemo. “What did I do last year? Oh, yeah, chemo.” It’s not that I don’t do other things. It’s more that chemo colors every last thing that I do. For instance, I went to the Bloomfield Market last Saturday but before I could do that, I had to get my pre-chemo cycle blood work. That meant no soft pretzels from the market. There’s a vendor that makes big, soft, salty pretzels – incredibly good. But you have to arrive before 10 if you want one. See – chemo. Yes, I could get up really early to get the blood work done but I always forget. Also a chemo side effect. 

It’s a fortunate problem. I know that I’m lucky to be well enough to visit the market, check out the stalls, buy fresh baguettes and scallions and strawberries so perfectly ripe the bees are visiting as I make my selections. A good friend reminded me recently that I can be lucky AND chemo can suck, at the same time. A necessary reminder.

A recent Saturday was one of those perfect days, the kind you’d design for an outdoor party, which is exactly where we spent the day. I’m photo-sensitive, thanks to chemo, but it was the right amount of shady in the backyard, patches of sunlight filtering through waving green leaves. By the time I left, my body was telling me I’d stayed too long but Sunday loomed ahead, quiet and open for recovery.

I have only one of my scan results – it seems good though I will hear the details and look at the scans at my next doctor appointment. The other scan isn’t back yet. There are currently some shortages of radiologists on the team, resulting in a backlog of scans to be read. I’ll be grateful for the positive MRI results and move on. 

If you’ve never had a CT or MRI, it’s an experience. CTs are not a big deal; contrast, for me, felt like a hot liquid flowing through my bloodstream, unpleasant but bearable. The MRI is so loud and so lengthy that it could fairly be described as tedious. When I have to hold my breath, I count the machine noises to pass the time. One of the noises – there are two distinct types – occurs 39 times between breaths. The louder, faster sound occurs 80 times. 

Upcoming is my colonoscopy. I joked at the beginning of the year that I’d be trading colonoscopies for PET scans but unfortunately, my type of cancer doesn’t show up on PETs or in blood tests. So, colonoscopies and mammograms will continue. 

Instead of drinking an enormous jug of something salty and vaguely lemon flavored, I have to drink two 8oz containers of a mystery liquid. It’s daunting to consider but given that I have a significant amount of gastro-intestinal … issues … it might actually be the easiest prep I’ve ever had. 

Sadly, I’m on chemo pills for the colonoscopy so I have to eat lots of Jello on my prep day, according to my oncologist. She laughed when she said that but it was sympathetic. Honestly, I think it’s pretty funny that I’m mixing a childhood treat with a poison.

Are you thinking about your favorite Jello flavors right now? I ate it frequently after liver surgery, when nothing tasted good. Now, I have boxes of lemon and peach, along with a bottle of apple juice ready for Wednesday. Meal planning made simple, I guess.

The New Jello Diet

Take Time to Smell … Paint Stripper?

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The nightmare was bad, the kind that makes you choose not to sleep for the remainder of the night. It was 4ish when I awoke, though, so I lay in bed, listening to the sounds of the early morning: two foxes talking as they headed toward the park, early birds calling to each other – more likely warning others off but as a non-speaker of bird, I couldn’t say for sure. 

There was a gentle movement at my back. One of my doxies has been sleeping with me; and curled tightly against my back in my cold bedroom, she was dreaming, her paws twitching, her tail occasionally wagging. She wouldn’t want me to tell you this part … her small, pink tongue was sticking out of her mouth just slightly.

My oncology check-in was uneventful. The care team is mostly happy with my situation, reminding me to drink at least 64 ounces of water every day and moisturize, moisturize, moisturize. They Snow White-d me when I arrived:  “Let me see your hands.” It made me laugh but I doubt they got the reference, especially not the PA who seems somewhat humorless.

I’m doing well, more tired than I think I’m capable of describing. And wow, the chemo brain has set in. I forget the most mundane things – things I’ve never before forgotten. You can advise me to make lists and use a calendar – go ahead; I know you want to. Funny thing is, I do both and I STILL forget really mundane things. We’re talking about everything from a take-out order for one of my kids to a grocery item to a doctor appointment. 

Haley and I walked 10,800+ steps yesterday. It was cold and windy, not the best time to marathon-walk. Nonetheless, we walked. At day’s end, I was so tired that I tried to go to bed without eating, not feeling in the least inclined to bother. But all three of the kids stepped in to make sure I ate: Wheat Chex (the best Chex cereal; I will accept no argument to the contrary) and a banana was my choice and it was about all I could manage, lol. 

Today, we’re back at the spring cleaning. It’s been so much fun. I can see why the Maria Kondo’s of the world encourage it, though I think you have to be in the right mindset to see the value. We’re excited to be freeing ourselves of the burden to care for objects that no longer serve; but even five years ago, we wouldn’t have been able to do this.

My favorite place – one that has helped us a lot through this experience – is Construction Junction, a re-use store here in Pittsburgh. I’ve donated the unwanted and found new treasures that I’m really excited about. For example, we got two antique light fixtures. One will replace the gaping hole in the ceiling where the previous light was before the screws in the – oops, they cut the hole too big – drywall gave way, allowing the fixture to fall off the ceiling and swing by fragile wires. Now, all I have to do is repair the drywall and paint before I can hang that light – next week, if the chemo doesn’t chop me off at my knees. 

We were planning to put the second fixture – yes, we have a place for that, actually two. Cleaning out is not successful if you add back in all sorts of new stuff. SMH Anyway, the final location for the second fixture was being hotly debated – over the dining room table or in the kitchen. The kitchen will win because we realized that the dining room ceiling – my turn for an oopsie – isn’t wired for a light. The current monstrosity has a cord and plug, which I KNEW, obviously, but just kind of forgot in the midst of my passionate argument in favor of the dining room. 

We are, however, considering solutions for the dining room. Both of us are leaning toward removing the monstrosity (donating to Construction Junction, of course) and using ambient light instead. The monstrosity is so big that it’s forehead level if we move the table AND it is impossible to clean. There are reasons to keep something that’s been labeled hard-to-clean but “hating it” isn’t one of them.

Work was interrupted multiple times by dogs. It was so nice that the puppies were convinced that it would be warm. They insisted, multiple times, that it would be warm THIS TIME. Their disappointment was palpable. Mine would be too if only I had fingerprints but they were stolen by capecitabine. I hope I get them back later this year because dropping stuff is freaking annoying. Still, we were able to enjoy the sun, if not the temperature. Soon, we’ll have both.

Much love and time to smell the spring flowers.  

Take Time to Smell … Paint Stripper?

How Do You Calculate …?

Deb Zuroski, , , , , , , , , Leave a comment

When I was 17 and nearing high school graduation, my beloved paternal grandmother, Myrtle the Turtle Traffic Light (I’ve talked about her before) was nearing the end of her life. She had cancer that she’d hidden from us for reasons she didn’t, perhaps couldn’t, explain. We didn’t find all this out until she called my mom for help with pain that she could no longer endure silently. 

It was 1984 – there were no PET/CT scans for cancer detection yet so Grandma Myrtle was admitted to the hospital for exploratory surgery that determined cancer was consuming her body. There was nothing they could do but try to keep her comfortable. She had a stroke while her body was healing from surgery. It took her voice, though she was able to gesture and listen to my chatter. The second stroke took her awareness. As I sat beside her bed, holding her hand, I could see that she had already left her body. But still, I held onto her until her last breath left. 

My sister and I had spent significant time with her as young children. She was busy, charismatic, active in her community, a widow for 15 years before she died, and a bit of a mystery to me. Nothing phased her. She could organize bus trips for seniors, run her local political chapter, take walks with her granddaughters, and teach her apartment neighbors how to play crazy bridge. 

How could anyone as strong be bested by illness? There was a lot of death in my childhood but somehow, perhaps because she was so easy to love?, her death hit harder. I worried about how she had endured the painful months leading to her call to my mom. When we cleaned out her apartment, we discovered dozens of empty liquor bottles in her storage. She managed the pain with alcohol. This, with the mental acuity of hindsight, is exactly the sort of pragmatic, low fuss solution I would expect of my grandmother. 

I’m halfway through week two of my first round of chemo. Have I explained the chemo pill treatment before? It’s simple – four pills twice per day for two weeks, then one week of no pills, then four pills twice per day for two weeks and on and on through the end of August. 

Last night, for only the second time since starting chemo, I was hit by a nausea brick. One moment, I was talking with my daughter. The next, I was standing, ready to race to the bathroom but deep breathing in hopes of preventing the forceful return of the single lemon Oreo I had just eaten. This is not a critique of Oreos. They are – aside from some of those misguided new flavors (pop rocks? In an Oreo?) – the perfect blend of crunchy cookie and creamy center. A lemon Oreo had seemed like a good mid-afternoon snack. Turns out that it was, instead, the day’s regret. 

While I was deep-breathing, my daughter was grabbing the Compazine. It helped enough that I was able to eat a very, very light meal (rice, just rice) so I could take my next round of chemo. That’s the important thing, you know. If at all possible, the chemo should continue. And so it does.

Next time, how about a story of my daughter’s cat, who waits for my middle-of-the-night bathroom visits to grab me around my ankle and attack? Every single time. Since he’s all black, he blends in. I’ve convinced myself that I could, otherwise, dodge his attacks. He’s a kitten and faster than the speed of sound. I definitely will never dodge his attacks. 

Much love. 

How Do You Calculate …?