cholangiocarcinoma

Skin Like Talcum And Lemon-juice Cuts

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

I’m knocking on the door of *that* age. AARP offers are arriving weekly, along with the announcements about senior living open houses and classes on preparing for retirement. I never imagined being this age. Mentally, I’m still a teenager, at best. It is a regular challenge to reconcile my internal view with the person I see in the mirror, the hands I see in my periphery as I type. 

My N-Aunt’s hands were an older version of mine–wrinkled, the skin appearing more and more like tissue paper, age spots darker and more copious. Before she died last week, at 94, she was mostly non-verbal, dementia having stolen her voice, along with most of her memories. I’ve been expecting, for months now, that one of my visits would be the last, a final handholding, a last kiss on her forehead and smoothing back of her baby-fine white hair.

When my husband was dying of cancer, I left for his hospital room every morning knowing that one day I would return home a widow. That’s just a fact, simply knowledge, not preparation. It’s not actually possible to “prepare yourself.” I’d describe it more as awareness, an acknowledgement that my role has changed from participant to spectator, witness to an ending, to a closing of that door on which my own knuckles rest.

Having spent a lot of time in N-Aunt’s memory care facility, I’ve adjusted to the sounds of people whose cognitive reality is different. A woman there chants the Hail Mary in fraying strands of sound, voice rising on the Hail Mary and fading to a whisper, before she starts again. The words blur together, barely recognizable. Over and over she chants the words, like she’s saying the rosary and is stuck on one bead. While N-Aunt Ginny dozed last week, holding my hands, I became immersed in the repetition of that prayer. I’m not religious but I hope the Blessed Mother heard her.

In a very Life of Pi experience, on my final visit, a resident called out for help removing a tiger from her room. You wouldn’t be alone finding it funny. I got a lot of mileage out of texting my eldest son about the tiger loose in the facility. It’s okay to laugh. In fact, I think laughing about the situations life throws our way is important to coping. 

Today, the day after my 60th birthday, I went to the hospital for my early morning CT, MRI, and bloodwork. There was some sort of confusion. I sat in the waiting room for 30 minutes, deep breathing while I tried to concentrate on a book, the scan-xiety eating away at my confidence. Finally, I went up to the counter. 

They’d forgotten to check me in when I arrived 15 minutes before my appt time. I was annoyed but kept it friendly. There was nothing malicious or intentional. It was just Monday morning. But I had to WORK at friendly. I was anxious, hungry because I have to fast before my scans (birthday dinner was just a milkshake from Page’s Dairy). Of course, according to the system, I’d missed my appointment time. I had to wait. Deep breathing can only get you so far in addressing scan-xiety. 

After that awkward start, everything went awry. I had to be stuck twice to find a vein for the contrast. And that $#@% HURT today. It always stings but today it burned like lemon juice in a paper cut for like 15 minutes. Really; it was a little unnecessary and I silently cursed the IV gods for doling out a secondary punishment. The CT was not noteworthy. The MRI was odd; I think I had a trainee behind the controls (which admittedly might be a perception caused entirely by my grumpy mood a solid two hours into the experience). 

Finally, I was able to head down to the lab for bloodwork. The staff there was lovely, prepared for a high volume of patients on a Monday. The phlebotomist teased me about being used as a sprinkler to water the plants, thanks to all the holes in my arms. It made me laugh, pushed aside the gray mood I’d sunk into as my hands fell asleep in the MRI (see?! A very odd MRI experience today). 

Now, the waiting begins as my brain fights with my emotions. My daughter always encourages me to ignore the “my chart” app until my doctor appointment. She has experience with my scan-xiety and tends to get annoyed with me because of the torture I put her through while I worry. I don’t mean to, of course. In fact, I talk big about how I won’t let cancer control my actions. My mama would say, “The path to hell is paved with good intentions.” It’s a good thing, I guess, that I don’t believe hell is a place. 

I’m at the coffee shop now. While I was in line, one of the baristas gave me my order before I placed it. I laughed and told him that he’d read my mind. That got us talking. The man in front of me in line said to me, “You don’t want to read minds because you’d know that, when you walked in the room, several people said, ‘Ick.’” Now, I know the point he was trying to make. A less open-hearted person might have taken that as offensive. Because, honestly, who suggests that a person’s arrival will make people say, “Ick”?! 

He walked away with his cherry danish and I paid for my iced tea. Before I left the counter, I said to the baristas, “Just saying: No one says or thinks ‘Ick’ when I walk in a room. I refuse to believe that.” They laughed. I laughed. Seriously. That was just rude, sir. My day started rather poorly. I won’t give you, stranger, permission to make it worse. 

Much love.

Skin Like Talcum And Lemon-juice Cuts

Repetition and/of Grief

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

The repetition is reassuring. “Breathe in. Breathe out. Breathe in and hold your breath.” After the first experience of having my liver scanned–I had confessed my nerves to the technician–he asked me how I felt. I told him the first breath is the hardest. You don’t know how long you’ll be holding it. Lying in a shallow cylinder filled with very loud noise and muffled, tinny music, seconds feel like minutes. Once the rhythm of the process is clear, it’s not difficult. The repetition feels like a test that you’re smashing. Yes! I held my breath. I kept still as a statue. Now, I can breathe again (for a moment, before the “breathe in” recording recycles). 

Keeping still is essential or they have to stop and restart the scan. One time, I cried but stayed completely still. The tears were silent as they rolled down the sides of my face into my ears and onto my neck. The technician asked if I was okay, if I wanted to stop. I said, “No. I’m okay.” And we kept at it. He didn’t say anything about it at the end, didn’t comment as I carefully wiped the tear stains with the edge of my hospital gown. We all have to wear two, one as a gown and one as a jacket, with a pair of ugly, ill-fitting, hospital pants. Today, they offered me a heated blanket, which I took happily. They blow cold air into that narrow tube. It’s hard to stay still when you start to shiver. 

The contrast burns just a little. It’s cold, running through the tube on my arm and wrapped around my thumb (to keep the tube from catching in the machinery and getting yanked out of my arm). This is my favorite part, not the mildly uncomfortable sensation but the chilly, stinging knowledge that we’re five minutes from the end of the scan. I don’t hate that narrow tube but I do hate what it represents. Now, the wait begins. This is the worst part, the worry, the anticipation, the sour-tasting hope. What will the scans reveal? 

I arrived home oddly tired, from the stress, and determined, as usual, not to think about the wait, not to watch for the notification that I have test results in my medical chart. Two of the contractors repairing the leak in my bathroom came into the kitchen as I emptied the dishwasher. They use the microwave every day to warm up lunch–a homemade taco bowl for one, meatballs in red sauce for the other. We always spend a few moments talking: one has a baby due next month and momma-to-be is at that stage of pregnancy where nothing is comfortable. The other is a foodie. We compared experiences eating Indian food and he told me about a Nigerian place he’s going to try soon. It’s far south of me, closer to Washington, PA so I probably won’t get there.  

They’re silent about the scans, of course. But one of the other contractors fusses, offering to move his vehicle so I can park closer to the house. He’s mournful, pitying, which always feels incredibly uncomfortable. They all know about the cancer because I joked with the GC one day that I’m going to have a nice tub before I die. I’m not dying but awareness matters. The life insurance company won’t insure me until I hit the five year mark–they know the score and so do I.

One of my nieces and I are planning a hiking trip to the Isle of Man, 100 miles around the whole of the island. The hike is called the Raad ny Foillan–pronounced rad na foil yan–the Way of the Gull. I’m hoping we’ll convince the family to go with us, at least for part of the trip. I think my dad would appreciate the idea of all of us visiting the homeland together, though I’ll acknowledge that I rarely act in ways that would please my father. Still, this is a trip I’d love to make. Something about it calls, like I’m a salmon rushing to get upstream. 

Construction work is nearly complete on my unexpected bathroom renovation. I was planning only to repair the shower. Then, when the GC pointed out the obvious, that I’d have to replace the shower tile, I realized that I’d also have to do something about the matching tile with which the previous owner lined the entire bathroom, including the built-in jet tub that I hate with the fire of a thousand suns. I’m not re-tiling the outside of that bathtub, I’m replacing it. You see what happened, right? From there, it was only a short jump to replacing the useless jack-and-jill sinks with a smaller vanity and STORAGE. This is how one starts with a minor repair and ends up with a renovation. 

I’ll admit to a moment or two of panic as the workers carried bag after bag of my former bathroom out of the house. The only reno I’ve ever done is DIY. This has been an adventure in learning new strategies and new coping mechanisms. They have taught me much about efficiency and tidiness while working. And laughter. There’s been something delightful about listening to the plumbers giggle together. Not so much the noises four men made as they carried my new freestanding, and very heavy, tub up two flights of stairs…those sounds feature in my nightmares. 

Early in the project, one of the young men, not quite an apprentice but definitely not a grizzled icon of construction work, slipped and fell through the newly floor-less bathroom, leaving a foot-shaped hole in the second floor bedroom ceiling. He wasn’t hurt. That’s the most important thing. He was CHAGRINED and has very gracefully endured my teasing ever since. He’s also done a great job on the repair, including repainting the entire ceiling because the sheen on the new gallon of paint didn’t match the original (even though we had the empty can to take to Sherwin Williams). File that under unsolved mysteries! 

It’s theoretically possible that I’ll be showering in my new bathroom this weekend. I sure hope I don’t hate the experience because I’m never doing it again. Maybe to the other bathrooms? If I do any more renovations, the kitchen is probably next. Some maniac former owner decided that the cupboards should be painted with floor stain, probably because they knew they were leaving a mess for a future owner. The floor stain is a misery–a curse on their gardens for the struggle they left with us. They also added cheap storage at the ceiling level that I was initially excited about. All the love to that naive younger version of myself, the one who thought she wouldn’t hate having to get out the step ladder every single time she needs something from those cupboards, which has proven to be way more frequently than the younger version of myself anticipated. 

After nearly a month with this group of contractors, I have affection for some, tolerance for one, and appreciation for another. I’ve gotten to know the individual sounds of their voices, their footsteps. I have inside jokes with the GC and talk to the apprentice like he’s my son (he doesn’t seem to mind having been “adopted” by me). They’ll leave at the end of the day today and it’s possible I’ll never see any of them again. I won’t hear about the birth of the baby next month, won’t know about the foodie’s latest obsession, won’t get the update of life after the move into a new apartment in two weeks, won’t hear the incredibly loud belching (which I’m not sorry to leave behind). Life is filled with these little bereavements. Ships passing in the night, the cliche calls it. 

But it’s more than that. Just as I’ve made room in my life for them, they too have created a world around this job. I suspect they do it with every project, moving their things in: a hoodie draped over the banister, house shoes by the front door for bad weather days, a ladder left in the second floor room after the ceiling repair. I found a construction pencil by the basement deep sink and a roll of blue tape at the top of the stairs. They’re incredibly tidy but also comfortable in the space, which feels very warm. I love to hear their feet pounding down the steps as they run outside to get something from the truck and their voices as they call to each other–a joke, a request, a question. 

The house will be quiet when they’re gone. Even the dogs will stop their barking.

Much love.

Repetition and/of Grief

It’s About The Oil

Deb Zuroski, , , , , , , , 4 Comments

Happy New Year, I guess. I’m not going to ponder here the implications of starting wars in other countries to avoid discussing pedophilia in the US. It’s certainly, nonetheless, worth highlighting that military action is inherently dangerous. Everyone, regardless of political party, should be horrified by the suggestion that our troops would be placed in harm’s way for any reason without significant oversight. If it’s a valid action, there’s no reason to hide it from the members of Congress whose role it is to protect the children, siblings, parents who serve in our names.  

Moving on as I, literally, in that first paragraph, promised that I would.

Because the cognitively declining person in my community can’t drive anymore, I often shuttle them to the grocery store. Today, we went to Costco where they insist on having their own cart, which they sometimes lose and we don’t always find. We usually shop separately because they prefer to go their own way. I suspect it’s an independence thing, which is good, though their grocery selections are often impulsive and not particularly healthy. 

Today, I stopped them from buying two bottles of gummy vitamins because they already take a vitamin supplement ordered by their doctor. Next, I discouraged the purchase of three pounds of very expensive angus beef. My persuasion was not successful. The angus beef has entered their refrigerator, hopefully to be packed into smaller amounts and quickly frozen. (I’ll check in a couple days.) I did distract them from purchasing a lifetime supply of Oreos which was both sad, because who doesn’t love a sandwich cookies, and also necessary, because a single older individual should absolutely not bring three pounds of Oreos into their house. 

I always try to make sure I’m with them at checkout because they find that process challenging, often unable to find their membership or credit card in their admittedly overstuffed wallet. The staff is patient but the process is still overwhelming. We got through it today with minimal bumps and pushed our carts to the exit. This is where things became hilarious. 

Our carts are side-by-side because they want to be able to see me. They worry if I’m behind them. I worry if I’m ahead of them because sometimes they get distracted and stop. I’ve lost them before simply by turning my back for a moment. One time, they bought a second lunch at the Costco cafe, having forgotten that we ate before shopping. They were mid-pizza-slice when I found them. Too late, of course. Another time, they completely left the building and sat in the parking lot–on one of the diamond-shaped barriers. I was in SUCH A PANIC, looking for them. In hindsight, it’s a memory I can laugh about but at the time I was sick to my stomach wondering if they’d wandered away or gotten into someone else’s car (a thing they’ve tried to do). 

Anyway, as I was saying, our carts are side-by-side as we walk through the sliding doors, unfortunately blocking a couple trying to enter. I apologize and make a joke. The man says, “You’re funny. You should be on stage at the Comedy Club. It’s right over there.” That makes me snort laugh. He and his wife laugh too and we all continue on our way. The person I’m with says, “Oh, that was so nice. What a compliment.” I look at them and consider whether to explain that the comment was NOT a compliment. It was what the kids in the 20 teens would call a “sick burn.” And it was really well done. 

I received copies of the European periodical that published my article. If you want one, hit me up. They’re €8.50/$10. I wish I could give them out for free but I had to pay to ship them from Europe, which, with tariffs, cost me $200. I’m trying to make a living here, lol. 

It seems I owe my pancreas an apology. Tests suggest that it is working as expected which, while good news, does lead to more questions. In addition, although I was supposed to transition to twice yearly scans from quarterly, my oncologist has concerns regarding all the weird new blips and blobs in my organs that showed up in the December scans. That, combined with the whole “can’t digest food” thing, has resulted in continuing with quarterly scans. Whatever. I woke up this morning still alive and that’s pretty awesome.

So, again, I say: Happy New Year. Protect your peace; there are more rough days ahead. 

Much love.

It’s About The Oil

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

A Million Years Ago….

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

A million years ago, I had the very great pleasure to spend time with a team of 25 Indians who traveled to the US to work on a project. Today, I was ordering pastries (at a Paris Baguette) from a young Indian man and he did something that made me feel such melancholy for that team from so very long ago. The work? I don’t give two hooey’s about that anymore, though at the time we were making history. Today, I miss the people on that team. 

So, what did that young Indian man do? Well, it’s a little hard to describe but basically it’s a head motion common in India, a sort of head nod/shake. The first time you work with a large group of Indian men, you’ll wonder why they appear to be shaking their heads in a sort of “no” gesture when you’re talking to them. They aren’t, in fact, saying “no.” They’re telling you to continue, that they’re with you, grasping what you’ve said. 

When that young barista did his nod/shake, I had to hold in the outpouring of *something* that tried to spew forth in a glory of half-sentences and laughter. Yes, I did, in fact, keep it to myself. As memories go, it’s a little inexplicable, a memory that one holds close because no one else will really understand. I doubt that I’ve thought of that head shake movement in ten years but today, in a second, I was transported right back to a huge room at the top of Highmark’s Pittsburgh building, leaning over a table as I tried to convince one of the men that I was right about the enrollment process. I did not win that argument.

Have you read Project Hail Mary? I’ve been having difficulty finding time to sit down with a book but I was on a longer drive recently listening to it. And I’m speechless. It’s that good. I’ve only cried twice but there’s still three hours left in the book so, you know, plenty of time for more tears.

 I spent a good part of two days in the company of a person with cognitive decline. They were having some work done in the house but sometimes can’t remember the work that’s being done and can’t answer questions about the work. So, I’m there, keeping them company, and providing support when there’s a question. It’s exhausting. Part of it is answering repeatedly the same question without getting annoyed. When I was in training at Disney World, our trainers would remind us that we could never be frustrated over the number of times we answered a question–about the time for the next show, the location of the bathrooms, why they couldn’t bring their ice cream into the theater, why they couldn’t take their beer from the building–because, as the trainers said, that was the FIRST time that person had asked ME that question. 

What, however, does one do when the same person asks the same question or a variation thereof about 16 times in an hour? Well, one still cannot get frustrated because the cognitively declining person thinks they’ve never asked that particular question before. Mostly, frustration isn’t the issue for me, to be honest. Coming up with interesting distractions IS. My daughter gave me a big container of buttons–yep, buttons–and suggested that, as a project, this person might enjoy sorting the buttons by color and putting them into another container (with compartments) that Haley also thoughtfully provided. It was great. Worked like a damn charm. They found it soothing. I had a solid 30 minutes of peace to just take a breath. I owe my girl BIG TIME for the idea. 

On the flip side of cognitive decline symptoms, I was visiting my not-my-aunt Ginny and she decided AGAIN that we needed to make a break for it. She concocted several very elaborate plans to get us out of the facility and into my car. The woman can’t walk anymore but she’s somehow maneuvering herself FASTER THAN I AM toward the exit. I keep trying to turn the wheelchair but she’s digging in her heels. How is she this strong?! 

Feeling rather melancholy recently in the run up to the quarterly scans, I decided it would be a good idea to think about all the strong women in my family who have left this earthly existence. There are so many. I don’t know if that means I got more than my share or if, more likely, we all have had strong women in our lives that we just, maybe, didn’t realize were so amazing because we were children at the time. I was calling on them, I guess, to give me strength, lift me out of the doldrums, who knows…. The mental exercise accomplished none of those things but did make me miss them more than ever. 

Scan-wise, I have no updates to share. Scans were December 1st because nothing says “Happy Freakin’ Holidays” like starting the month by checking one’s body for bips and bops that don’t belong. I follow an author, breast cancer remission, who, this week, talked about the cruelty of the wait. She has a mass that might be nothing or might be something. She has a biopsy in two weeks. When she said that, in her Insta reel, I felt that same stomach drop that I get every single time I have scans. Disease takes normalcy as well as health. It steals peace and quiet moments of joy, if it can. 

I know the strategies of distraction and mindfulness but I am also deeply familiar with the anxiety of the wait–for news, for treatment, for results, for appointments. Even when the news is good, there is regular checking for the possibility of new bad news. GAH. It’s a relentless battle. And then well-meaning scientists conduct a study to see if cancer patients are more likely to be depressed than healthy people…. I’m sorry. Was that a question? What could their hypothesis have been other than–OBVIOUSLY? What are they going to do with those incredibly obvious results in a grotesquely under-funded mental health industry? 

Anyway, happy December to all who celebrate the last month of the year. I’ve always thought that the end of the year should come with a sticker, like a checkmark or a big smiley face, and then we should get recess. Instead, we start the year with taxes due, a new deductible on our health insurance ($9,100 for me), and debt from holiday extravagance. I’d much rather have the recess, thank you.

A Frank Nowalk original is up for auction this week. I desperately want it to be purchased by someone who will love it as much as he loved making it. It’s an incredible homage to Pittsburgh and currently has NO BIDS on it.

Also, if you look at the rest of the catalog, you’ll find some Ed Eberle art. If you don’t know who he is, check him out!! The Eberle Gallery is still in Homestead and very active in supporting growing artists. 

Musical interlude–”Christmas Time Is Here” by Bela Fleck and the Flecktones. The whole Jingle All The Way album is delightful. New takes on familiar music. Lots of banjo, some didgeridoo, and more. You won’t be sorry. And if you buy now, you’ll get this set of steak knives, sharp enough to cut through this can of cranberry sauce. 

Much love…and maybe some good luck?

A Million Years Ago….

The (Early) Winter of Our Discontent

Deb Zuroski, , , , , , , , , , , , , 4 Comments

Francis Nowalk’s here in Pittsburgh is closing its doors after more than 75 years. Frank, as he was called, worked in the store he built until Covid brought him literally to his knees in 2023. After he passed away last year, his children and grandchildren began the process of closing up the famous business, finally reaching the stage of selling off the lighting solutions and the brick-and-mortar multi-story showroom and warehouse. https://pittsburghquarterly.com/articles/a-pittsburgh-treasure/  

Since we’ve been looking for period-appropriate sconces to replace the modern lighting in our very Victorian house, we raced to their sale and what a delight it was. We were even lucky enough to get one of his handmade pieces (not even realizing he’d made it until one of the sons told us its provenance). I can’t begin to tell you how dirty we got, digging through boxes of bips and bops. I haven’t had so much fun spending money in a long time. 

There was something very bittersweet about having his children, all around my age, reminiscing about various pieces as they were sold. “Wasn’t this in the house at one point?” one sister would ask and another would agree, while one of the brothers answered, “No” in a very confident voice. Occasionally, while we were there, we’d see one of them grab something from the showroom. They’d call out, “I’m taking this to the car.” A brother or sister would sigh and call out, “Okay.” The siblings all laughed about it, though, and told us that everyone in the family has pieces from their dad’s business. “He lives in all our houses,” one of the daughters said, which is a lovely legacy. I think most of us would like to know that we’re remembered with such sweetness.

I went to a screening of A Princess Bride that included a Cary Elwes Q&A. As a single ticket, I was able to swoop in at the last minute to get a cheap seat in the third row, perfect placement for a good view of the movie and the Q&A after. There was an interesting prohibition; absolutely no pictures of Cary were permitted. We were warned that violators would be politely escorted out. 

The screening was a delight. It seemed like everyone there knew the movie. Some attendees were dressed up as Buttercup, Wesley, or the dread pirate Roberts. I even saw a six-fingered man (without his sword, of course). With the first use of “As You Wish,” there were ooohs and aaahs. When Andre the Giant appeared, the room erupted in cheers. It was wonderful. 

I’m slightly less enthusiastic about the Q&A. Cary Elwes was very funny, very polished, very emotionally removed from the event. I felt like he’d memorized his responses and enunciated them with a minimum of engagement. I may be alone in that impression, as there was a lot of laughter during his stories. They were good stories, for sure. I just felt like he’d told the same ones a thousand times. Because he has. You know?

In 2012, I think it was, my husband got us tickets to see William Shatner’s one-man show, Shatner’s World: We Just Live In It. It was my birthday present, as I am a huuuuuuuge OG Star Trek fan and might, if needed, be called upon to recite dialog from most of the 80+ episodes. So far, surprisingly, I haven’t needed to do that. But I’m ready. You know. Just in case. 

Anyway, it’s likely no surprise that I’m comparing Cary Elwes’ Q&A with Shatner’s one-man show. The difference for me is stark. Every word of Shatner’s show felt like a conversation, like he was sitting in an easy chair across the room, reminiscing about his life, even though that show ran for, maybe, three weeks on Broadway before he took it on a national tour for another eight months. It was magical, slightly deranged, and riveting to watch. 

Speaking of Shatner, if you haven’t listened to his album Has Been, you have missed something spectacular and should rectify that as soon as possible. Unlike his earlier work, this masterpiece produced by Ben Folds is often wrenching and intimate. He reflects on his life, his many mistakes, his public image. One of the interesting things about it is that listening will not make you like Shatner the man anymore than he deserves but somehow it allows you to empathize with him. I like to listen to it on longer drives, when I can really focus on the lyrics. In my humble opinion, it is not the album that you play in the background while doing dishes. 

In other music news, if you’re in the area and you’re not going to see The English Beat, are you even actually in the area? I’ve been following them for a looooong time but this will be my first time seeing them live. The venue is table seating near the stage and then some sort of balcony seating in the back. My seats are at a table. In fact, I purchased the entire table and then invited some people to join me. I just can’t bring myself to sit at a 4-top with three strangers. It is too awkward. Well…okay…the truth is that I’m too awkward. 

Winter has arrived earlier than expected. The trees, overnight, made a yellow carpet of leaves on Negley Avenue, covering the sidewalks and road. Truly, Dorothy could have found her way easily on that not-brick road, despite the blustery wind. Although the temperature rises slightly during the day, the cold Canadian air continues to rustle empty branches, whip hair into eyes, and wrestle unbuttoned coats wide. 

An elderly woman enters the coffee shop, wool coat buttoned to her neck. She has on a fanny pack, the strap at her waist around the back, the pack in front snuggled lower, below her curves. She waits patiently for her drink, which the barista announces loudly, a large peppermint hot cocoa with whipped cream and a chocolate drizzle. As she walks by me, her gold dangle earrings glint in the afternoon light. She inhales the warm peppermint scent wafting from her cup and takes a delicate lick of whipped cream before stepping into winter’s windy embrace, her gray hair tousled by the breeze. 

Another woman enters the coffee shop; a few errant leaves join her, swirling in a circle around the brick floor. Her silver hair hangs to her chin in a bob that curls under, something I could never reliably achieve. She’s wearing a puffy coat the color of lilac. How is it that some people look effortlessly stylish and some people (me. I mean me) look effortfully like we close our eyes before we pick out our outfits?

Online guidance suggested creating playlists of music familiar to my cognitively declining acquaintance. Reluctantly, because I have to listen to it too–haha, I’ve done it: Leon Russell, The Beatles, Peter, Paul & Mary, Simon & Garfunkel, and a few early 70s bands, like Moody Blues, Doobie Brothers, etc. I passionately dislike The Beatles–I know, I know–but in early childhood, I was listening to my parents’ 40s and early 50s music. I literally had two albums of my own: a Jackson Five and the Carpenters. The Beatles, in particular, were NOT on the record player. Later, when my dad was an Outlaw Country fan, we were listening to 8-tracks of Willie and Friends. My mom’s favorite music was silence. She abhorred Outlaw Country, lol. I like Willie, in particular, but I prefer his folk and indie music, such as Last Man Standing. He’s renowned for his lyricism and I find his later stuff particularly smart and quite funny. I also admire his frank disdain for people who have forgotten or perhaps deliberately misunderstood what he represents.

This morning, I entered the coffee shop early and saw an acquaintance absolutely immersed in his computer screen. I waved but he didn’t notice so I bent to his eye level and waved until he looked up and saw me. It made me, him, and the barista laugh. Day’s goals met. 

I haven’t talked much about my health but had a reminder this morning from a friend that silence can be distressing to others. So, quick update and then we won’t talk about it again unless it’s necessary: September scans picked up a new spot too small to biopsy. It’s in the gallbladder fundus, which, so that you don’t have to google, is at the top of the gallbladder under the right lobe of the liver. (I no longer have a left lobe. lol) 

It might be something. It might be nothing. My healthcare team calls it “concerning,” though not to me, which I find rather funny. They like to be very optimistic and cheerful. I’m an optimist, too, and continue to buy green bananas. (Why do I know they call it concerning? Because a resident at my PCP’s office read the medical record to me. I’m pretty sure they weren’t supposed to. haha) My next scans and bloodwork are December 1st. I’ll see my healthcare team again in mid-December, at which point we’ll know what’s next, whether it’s more scans, surgery, treatment, or a combination thereof. 

Sure, I am occasionally awash with, to paraphrase Aragorn, “…The fear that would take the heart of me.” Cholangiocarcinoma kills 80-90% of patients. I wish this weren’t my path. “”So do I,’ said Gandalf, ‘And so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.’” (Tolkien sure knew how to turn a phrase.)

I’ve had all the very difficult conversations. I’ve updated the will. I’ve made all the lists–finances, bills, passwords, etc. There’s even a spreadsheet with all the home repairs I’ve done over the years since Ken died. I’m probably more paper-work prepared for death than most of you who ALSO have no idea when you’ll die. (So, maybe, get on that. It will benefit your family.) Anyway, I’m as determined today as yesterday, and the day before, to keep living until I die. Some days the worry wins but most days I win. And now we’re done with that topic. If there’s more to say, I’ll say it when I’m ready.

Much love.

The (Early) Winter of Our Discontent

Scanning The Future And Maybe The Past

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

Driving across the state at this time of year, the hills are dotted with color, white and pink blossoms and the soft green of spring. I left the turnpike around Carlisle, Pennsylvania and drove through small towns with remarkable names like Jim Thorpe and Zooks Corner and acre after acre of farmland, lush with early growth. The hillsides here are dotted with cows, sheep, horses, and the occasional goat. With my air conditioner issuing only an unenthusiastic whisper of warm-ish air, I’m relying on vintage, 4×65 air conditioning. It’s mostly effective, cooling, if also fragrant with the earthy smells of animals, not the least of which was the 18-wheeler filled with cattle, their large noses pressed through the grates like dogs hanging out the car window.

When I lived in Florida, my car didn’t have AC. I’d get in and, first thing, wind down the windows – yes, with a hand crank – before going anywhere. Even if I was driving the mile and a half to the Piggly Wiggly, the windows had to be down. It was so hot in the car that, no joke, my camera tripod handle warped and it wasn’t even in direct sunlight. The 4×65 air conditioning didn’t exactly work. The breezes were mostly warm, smelling of asphalt and fumes. My roommates laughed from their white, AC-equipped cars but I didn’t care. I was 20 years old and living the dream, as they say. 

Back then, I had only an AM radio but now I listen to audiobooks while I drive. This time it was Dragon Day by Bob Proehl, a fictional oral history by survivors of dragon attacks. It was immensely enjoyable, though its audible and goodreads reviews are rather middling. I joke – often – about reading books with dragon sex (yes, they exist), but I generally prefer my literary entertainments sans dragons. This, however, is worth a listen. 

My quarterly scans were this morning, scheduled early, allowing me to visit a favorite breakfast spot as a little post-scans celebration. The tests are a love/hate experience but the after-scans breakfast is a way to honor being here for another day, something I might not have except for that life-changing CT in December 2023. If this feels like a nudge, it is. YOU too probably need preventive care that you’ve been putting off. 

I’m writing this from another hospital, where I’ve spent my afternoon, acting as the patient support for someone getting their preventive colonoscopy. There was just a code O in obstetrics, which made me worry for strangers in the way one does at a hospital. As another patient once reminded me, very few of the people at a hospital are there for happy reasons but I always think of obstetrics as being one of the exceptions. Until that code O. 

An accordion-playing busker in Squirrel Hill has garnered much attention during his performances. He was good enough for me to cross the street to throw some cash into his open case. I’ve looked for him since and regret not asking his name. Buskers are frequent throughout the city but good buskers are rare. Years ago, there was a great singer, in our Oakland neighborhood, who could stop traffic. He busked in the late 80s, his voice deep and rich as he sang gospel, swaying to and fro on his flipped-over milk crate. I looked for him — a big, stooped-shouldered man with a tangle of black hair and dirty clothes — long after he stopped busking on the sidewalk near the McDonalds.

Much love.

Scanning The Future And Maybe The Past

Have You Visited Your PCP Lately?

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Walking to the coffee shop today, I got stopped by one of those sidewalk sales/charity teams. (I have no idea what they were pitching.) They greeted me and of course I greeted them, super friendly, no defense in place. However, when they said, “Stop and check us out,” I said, with a huge smile, “I can’t. I have a DATE.” I’m still laughing. I have no idea where that came from. I don’t have a date (unless it’s a date with my manuscript?). Even better, the young woman said, “Awww.” It’s making me laugh again as I sit here at my little coffee shop table. Was she awwing about my excitement or was it because this little old lady is getting some action? (The last one is absolutely the funniest but both thoughts are making me laugh.) Where did that lie even come from? I haven’t been on a date since I was 22. SMH I may go to hell for that lie but at least I’ll be laughing.

Haley and I were at a thrift store a few weeks ago. She prefers to thrift her clothes and I love to watch how she chooses items. We had to park rather far from the store – it was a busy Saturday for thrifting – and as we were walking toward the entrance, I saw a man pushing a cart toward his car. There’s no cart return option at this thrift store. So, obviously, I offered to return the cart for him. What surprised me was his reaction: He was so pleased, so shocked, as though I’d offered him money or bought him lunch. He was unprepared for someone to do him a kindness. 

I’ve been thinking about that a lot since it happened. Community is our first line of resistance and kindness is our best beginning. It costs literally nothing to be kind to others. We’re all struggling and if you’ve read any of Project 2025, you know that we’re going to be struggling a lot more. Forming community and protecting the most vulnerable in that space are essential actions as we face down the egregious destruction and evil coming at us.

Last week, I encountered an elderly woman as I was heading into Costco. She was filling her car and stopped me, asking if I would be willing to wait a moment and take her cart. Even if I hadn’t been headed into the store, obviously, the answer was yes. I checked the contents and offered to put the heavier items in the car for her. She said, “No, no. Those are heavy. I can’t ask you to do that.” Here’s me thinking, ‘Ma’am, you’re, at minimum, 20 years older than me. I think I can help here’. When I insisted, she fussed a little and said, “Oh, thank you. Today’s the first day I’m walking without my cane.” And yet, she didn’t want to impose by having me lift a case of water for her. Honestly, I wanted to give her a hug for even asking me to take her cart back to the store.

Have I ever mentioned how much I like estate sales? Haley and I went to a crafter’s estate sale on a recent Saturday and came home with dozens of skeins of hand-dyed yarn – primarily wools and silks, the most beautiful, rich colors. Imagine my surprise when my 18-year-old shows me that he’s already snagged three skeins of a deep red wool to crochet himself a blanket. Being a much faster crocheter than I am, he quickly needed to go to our local yarn store to find some complementary yarns. He’s added a deep purple to the blanket and it is gorgeous. 

I just had my annual preventive care doctor appointment. My blood pressure is great. My blood work (which I get every three months) is perfect. I have appointments for my annual mammo and my every three-to-five year pap test. Last year’s colonoscopy was good enough that I won’t need another for 10 years. I even got my pneumonia vaccine (yay, asthma). We also talked a bit about how very lucky I am to be alive. Probably not a conversation most patients have, am I right? I think they – the doctors – want to be reassuring when they bring it up. Apparently, it’s a bit of a thing in the office – the nurses told the residents about the ‘miracle’. If the story helps someone else, it doesn’t bother me to talk about it; I still feel, frequently, that stab of gratitude for the technician who spotted an anomaly on a random CT. 

Maybe I talk about it too often but I think it’s worth remembering the gift of a ‘second chance’, if you will. What does that look like? Should I climb Kilimanjaro? Run a marathon? Learn a new language? Travel the globe? There are, absolutely, a few trips on my bucket list – the Isle of Man which was my great grandfather’s birth place, a few more National Parks, Padre Island National Seashore again. More important, though, is my hope to spend more time within my little community. After all, it’s not where you go but who you are with on your journey. 

Much love.

Have You Visited Your PCP Lately?

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

7mm From Free

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

Fall in Pittsburgh – foggy mornings, brisk sunny days. Walking to the coffee shop again is like putting on fluffy socks as the temperature drops. Much about the store itself has changed but not the customers. Every day, I see someone I know and we share a smile, sometimes a few words. Community, my friends. 

A quick health update: scans show no evidence of disease in my liver. That 7mm spot in a pulmonary lymph node – found in my December 2023 scan – is still there. We’re calling that a watched spot, lol. Next scans in January. So far so good. 

There’s a group behind me talking about sourcing materials. It’s a very serious discussion, almost presentation-like. Reminds me a lot of standing in front of a client, pitching our enrollment tools. That’s an experience I don’t miss at all. One time, many years ago, when I was responsible for creating the health plans that self-insured clients purchased, a potential customer approached us about creating a policy that did not cover pregnancy. We had a lot of internal conversation about that and as was often the case, I was the only woman at the table. Of the six or eight men in the room with me, only one agreed that it was grotesque to even consider that request. Luckily for me, having to write that coverage, and for the women who would purchase it, the man who agreed with me was the vice president of sales. We didn’t write the business. 

The coffee shop is bustling, lots of people enjoying the weather. A child – early teens, maybe – has just come in. They have that tentativeness of the teen years, when you think everyone is looking at you and you really want to act normal, whatever that is, or really cool, again however that looks. Their money is folded in their hand. They have to unfold the little square of bills to pay. 

After a few moments, they’re handed a large mocha with a mound of whipped cream and a drizzle of chocolate syrup. It looks delicious. Apparently, it’s not quite ready to drink, though. They head to the coffee bar, use a straw to stir the whipped cream into the drink and then pour in a bunch of cream. A taste of it confirms that it needs even more cream. A second quality check confirms that perfection has been reached. The lid is snapped on; their remaining money is carefully folded and tucked into a pocket, and off they go into the sunny afternoon. 

I just finished reading Demon Copperhead. Oh Lordy. Was that a journey of a book. It took me a couple weeks to read because it is stark, filled with trauma, making it one of those novels to be read in short sessions. I have to say, though, that it deserved the Pulitzer. Barbara Kingsolver has written a protagonist whose voice is so powerful I can still hear him talking in my head, days after I finished the book. 

Recently, thanks, I think, to all of the death in Demon Copperfield, I had a dream about my paternal grandmother. She died when I was 17 – cancer, plus two strokes – a particularly bad death. She was dying again in my dream and I was going to see her one last time. It doesn’t make sense – do dreams ever? – because in the real world I was with her when she died. It was, in fact, the first time I watched someone pass away. 

My sister and I had a challenging childhood. Grandma made things better. I felt closer to her than I can express; she only had two grandchildren so she lavished all her attention on us – not money as she had virtually nothing that wasn’t provided by my parents. We didn’t need to have expensive adventures. Sometimes we’d walk through the mall and buy a Friendly’s junior milkshake and fries to share. We’d guess how many steps it would take to walk the neighborhood and then we’d count as we walked and cheer whoever had come the closest. She taught us how to play Crazy Bridge and we taught her and her friends to play Uno.

Losing her in my teens was as inexpressible as re-losing her in my dreams. She already spends a not insignificant amount of time in my head. I can picture her clearly, a tiny woman with a huge personality, assertive, mouthy, fearless → except for cancer. She didn’t even tell us she was sick until it was far too late. 

When she eventually called my mom (rather than her only son!) and went to the hospital, it was her final trip. Doctors did exploratory surgery and concluded there was more cancer than body. It was the early days of hospice care. Grandma stayed in a regular hospital room surrounded by all the normal hospital noises. The care team did all they could to keep her comfortable while we waited for her to die. Just a few days after she was admitted, Grandma had the first stroke. She lost the ability to speak but could gesture to me that she wanted to roll onto her side (her left side because it was her favorite sleeping position). 

None of this reality occurred in the dream. Instead, she was sitting upright in a hospital bed and talking, her candy floss mass of white hair curling all over her head. I, on the other hand, was struggling to get out of bed, frantic to get to my last visit with her. What cruelty are dreams. I’d give a lot to dream instead about her driving us to Dunkin Donuts where we’d get honey sticks and the plain donuts with the dunking handle, the kind my mom liked to dunk in her coffee. 

Much love.

7mm From Free