biliary cancer

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

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….

Have You Visited Your PCP Lately?

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

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

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

It’s A Middlin’ Day

Deb Zuroski, , , , , , , 2 Comments

Coming back from a doctor appointment recently, I drove into a landscape painting, the sky pale blue and dotted with fluffy white clouds. It was somewhat surreal, the utter stillness, but also peaceful as though the stillness was a pause, a moment to catch one’s breath, maybe also to inhale some lilac and peony before life’s chaos continued. 

Those moments are more difficult to see as I enter the slog of the midpoint. Yes, yes, I’m halfway done with those pills. Now, I can both see the end and dread it, as I have been warned. It’s a thing – some kind of a thing – to take a poison dose every day in hopes that it will kill something else that’s worse. It’s another thing to stop taking that poison and know that there’s nothing fighting anymore. 

My oncology therapist warned me during one of our conversations that it can be scary to cross the highwire that is life without those terrible pills. I was feeling some sort of way about feeling sick ALL THE TIME to prevent myself from being sick. She was right, of course, as her years of experience could have told me. I do feel anxious about removing the chemo net from my highwire life. What if the scans – every three months thank you very much – don’t catch it soon enough when it inevitably returns? What if my remission lasts until after the regular scans end? What if? What if? What if?

But we can’t live like that, of course. I crested the hill and started the downward leg of my chemo journey on Memorial Day; and in a week, the day after I watch my youngest graduate from high school, I’ll get my first CT and MRI scans. The therapist and I have already talked about my upcoming scan-xiety – that anxiety that arrives the eve of the scans and lasts through the reading of the results. Having waited for and waded through a lot of tests and results, I’ve experienced scan-xiety. I even still get it with every blood test, my heart working harder as I check my white blood cell count and my tumor markers. 

The anxiety fades as the results come in, even the cancer result didn’t cause more anxiety. Once the test confirmed what we suspected, instead of feeling anxious, I felt … resolve, perhaps, determination to fight. The determination is still there but the slog, the deadly slog of daily poisonings is tedious. The continuing battle against cramps, diarrhea, stomach upset, mouth sores is wearisome, to say the least. 

This is more acknowledgement than complaint. I’m beyond grateful for the tech who spotted that anomalous lesion on my liver, for the people who made it possible for me to take a handful of pills twice a day to extend my life, for the people who help me traverse that highwire even with the net currently in place. BUT some days, when the energy is so low that I spend the day lying on the sofa, staring up at the ceiling while a podcast or audiobook plays softly next to my ear, I think about the woman who spent last spring preparing for a hike. Where the hell is she right now? Definitely not hiking.

It’s A Middlin’ Day

Naps Are the New Normal

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

When I’m not feeling well, as has been the case for several days, I think about how well I would be feeling if I weren’t on chemo and how, despite feeling completely normal, I would be moving ever closer to death as the tumor inside me grew. That I am now cancer-free and feeling ill is the contrasting benefit to my wistful thoughts of wellness, the longing for the pleasure of spring planting and days working beside a big, open coffee shop door.

One of the strategies the oncology therapist has been trying to drill into my head is – conserve energy. Use a terry cloth robe instead of drying off after a shower. Sit to chop the veg for dinner. Take naps. Exercise in brief sessions throughout the day – three 10-minute walks instead of a 30-minute one. It’s hard to acknowledge that some things have to change. I’m not sick but damn this chemo is kicking my butt. 

Today, it’s warm but my toes are suffering from chemo-cold. My fluffy blue socks were a gift from a friend who beat breast cancer. It’s a common theme – apparently – the cold chemo feet. The socks are great and include a non-slip message to cancer: something about me being a bad bitch. I highly recommend them. They’re very snuggly. I also hate them because they too are a marker that all is not as it should be. Instead of socks, I should be padding barefoot through the house and out the back door to sit on the deck. Whine, whine, whine. I am grateful. I AM. But feeling unwell messes with my already chemo-fogged brain, making rational thought an occasional visitor rather than the constant companion I prefer.

My chemo break week has been something of a chemo-tastrophe. I got another infection. My blood work shows that my body is still fighting it. On top of that, I’ve been so drowsy and irritable that I haven’t been able to stand myself. I honestly don’t know how my kids are putting up with me. It’s so bad that I’m almost looking forward to going back on the chemo on Monday. Almost. 

I was warned by those who came before that chemo break is terrible for everyone, which makes it no break at all, you know? I do feel somewhat better today, of course, because it’s the day before chemo starts again. 

We’re getting a new roof, something I put off longer than I should have. I’ve been meeting with contractors about the work and it’s been a right pain in the patootie. One of them tried to bully me. Another gave me a quote of $40,000. Seriously. I mean, my roof is going to be expensive but really? One of the roofers told me to talk to my husband about the quote. 

Back to the point, one of the contractors insisted on socializing with me, a bonding effort perhaps, and I finally said, “hey, I apologize but I’m on chemo and it’s kicking my ass. I’m going to sit during this.” How does he respond? By telling me about all the people he knows who have died of cancer. What? Don’t tell me that people die from cancer. This is something I already know. It’s like when I was pregnant and people told me all of their delivery horror stories. Let’s not, my friends. I already know that cancer is a killer. That’s literally why I’m on chemo. 

Earlier in the week, I was re-watching the Barbie movie with my daughter and I kept thinking that I was too tired to do any of the things they were doing. Jump out of bed and make breakfast? Nope. Go to the beach? Only if I can lie down. Escape to the real world? Maybe if they put in more benches so I can sit. 

Even with all this, I’ve been walking as much as I can. It’s a challenge to hit the step goals I set for myself but I’m trying. Last night when I went up to bed, I accidentally left my water bottle on the first floor and then had a little mental discussion (argument? pep talk?) about whether I actually needed to drink water during the night. The answer is yes. Chemo dehydration is dangerous. It causes fainting and dizziness and other bad stuff. So, I walked the two flights to the first floor and back up to bed. Hit my step goal too. 

Much love. And naps.

Naps Are the New Normal