cholangiocarcinoma

I Thought I Was Olive Oyl

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

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

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

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

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

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

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

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

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

Much love.

I Thought I Was Olive Oyl

Walking a Razor-thin Wire

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

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

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

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

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

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

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

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

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

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

Much love.

Walking a Razor-thin Wire

A Case of the Augusts

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No nap today, which is a big step up from Friday and Saturday. Those two days you’d have found me on the sofa, dealing with a bad case of WONKY. It’s hard to describe wonky. It comes in many forms. Sometimes, the world seems tilted a little and I can’t keep my balance. Other days, I’m slow-moving through molasses, heavy of limb and empty-headed. 

Life is going relatively well, all things considered. And by that, I mean my nails are still peeling and my heels are cracked, my stomach and my intestines are unpredictable, but those are my normal so, actually, I’ve got no complaints here.  

My daughter is in San Diego, enjoying a much-deserved break from all things cancer. Since she’s been doing the vast majority of the cooking, I’ve created a menu of low-effort meals for the week, necessary, since my energy is still rather sapped as the chemo slowly leaves my body. We’re having, in case you’re curious: pancakes and bacon, burgers, a ham slice and potatoes, a small roast with carrots and some roasted delicata squash, sandwiches, and meatloaf. If things get too real, there’s pizza in the freezer. And I won’t feel sorry in the least if I need to invoke pizza night because who doesn’t like pizza?!

The nurse who takes care of me called to wish me congratulations on my chemo break and to let me know that she won’t be checking in anymore. I knew that but it was still a bit of a jolt. It’s not that I need her to do anything but it feels again like the protective net is slipping. No doctor appointments, no nurse checking in with me, no bloodwork. What am I, a healthy person?

It’s move-in time at the college across the street. There’s an illegal amount of laughing and giggling going on. It’s weirdly like the kids are looking forward to ditching their parents and living without supervision. (This is sarcasm.) 

I never lived in a dorm. Even with some scholarship money, I couldn’t afford to live on campus. Besides which, during college, I worked 4-11 most nights to try to make up the financial gap between the bill for college and those beloved scholarship funds/student loans. By the time I started grad school in Pittsburgh, leaving the house wasn’t something special. My dad had already warned me that if I planned on living at home, he’d charge me $500/month rent. That was more than I paid for my first Pittsburgh apartment ($325/month baby, utilities included).   

The yearly karaoke hasn’t started yet. Believe me, I’m on tenterhooks, waiting for it. When it begins, if I go across the street and sing, do you think they’ll get the hint? I’d guess not. My singing is at least equivalent to some of the people who have performed there in the past. I know why karaoke is popular: alcohol. Since there’s no alcohol on campus, I cannot explain the success of this annual event. And since I only have part of a liver, I can’t even add alcohol to MY day to make the event more pleasing to my sober ear. 

Honestly, I love the college move-in tradition. What I dislike passionately is the capitalist effort to encourage parents to spend ridiculous sums on things their children will throw out in nine months when they clear out their dorm rooms. Trust me, parents, your children will not use 90% of the cleaning supplies you’re purchasing. Neither will they need a second set of sheets, shiny wall decor, and throw pillows. Many of them won’t even use the notebooks and pens that Target says you need to get them. I know this because I walk by the unopened packs of notebooks tossed on the sidewalk with the unopened cleaner, mops and brooms, hangars and clothes with price tags still attached. Community members, including me, have been trying for years to get the schools to collect these things for freecycling but it’s difficult to coordinate and easy to look the other way. 

There’s an interesting media frenzy about a celebrity’s child attending Carnegie Mellon this fall. Mostly, we residents (and the students) don’t care much about this stuff. CMU is renowned for its student – and alumni – fame. My roommate, a million years ago, was the son of an ambassador. I was in class with the great-granddaughter of our founder, as well as full professors, children of CEOs, international students of government officials. It’s hard to be entitled amongst the entitled. I suspect she’ll blend in with a student body that is singularly unimpressed by fame. After all, the shine of privilege gets decidedly less shiny the first time you have to tell your roomie that he has vomit in his hair. 

Much love. 

A Case of the Augusts

Mary Oliver Knows What’s What

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The neighborhood is quiet again. For six weeks during the summer, there’s a camp across the street. The kids are quite … audible from about 9AM to 4PM. It’s delightful, really, the sounds they make, their shrieks of laughter and chatter. Now, it’s easier, again, to hear birds but the noises of childhood are all gone. Probably that’s not true in most neighborhoods but ours is an older population. There are few children here and their giggles are muted. 

In her poem “Don’t Hesitate,” Mary Oliver writes, “Joy is not made to be a crumb.” She tells us to embrace the joyful moments we come upon because they are few and unexpected. Isn’t that a child’s laugh? The smell of the bread my daughter is baking? When my son teases me and we chuckle because I called Deadpool Spiderman? I can’t wait for an end to cancer to experience joy because there might not be an end to cancer but if we don’t seek it out and celebrate those found moments, there will definitely be an end to joy. 

It’s cycle 8, the last cycle of chemo for now. And it’s been full of delights – vomiting, attacks of unproductive nausea (if you know, you know), cold sweats, dizziness, and lots of unspecified gastrointestinal delights. At least I know I’ll have a break soon. 

My nails have started peeling but thankfully, my hands and feet are not. Yes, that’s a pretty common chemo thing – peeling appendages. Ken struggled with it. His feet especially looked like dried alligator skin. Nothing seemed to help him. I’ve been more fortunate and more responsive to my daughter’s entreaties to please use the body lotion people have so kindly sent me. It’s working; so, thanks, everyone. 

It gets tiresome, you know, to constantly think about your own wellbeing. We’re all mostly oblivious to the functions of our bodies until those parts are not quite working. Back aches, stomach upsets, sore feet are all experiences we’ve had and moved on from, not giving them a thought. But in the midst of an extended health event, everything is about what’s working and not. And after a bit, it’s annoying to be constantly spotting problems. 

One morning, I woke up thinking “I feel sick.” Then, I sat up and had terrible vertigo that did not end when I lay back down. Closing your eyes works (in case you ever experience vertigo). After a few moments, the dizziness was gone but the nausea stayed. I have to eat to take my chemo pills so I had a glass of milk for breakfast and an egg for dinner and nothing in between. Tiresome, you see what I mean? Who wants to constantly be thinking about whether they feel okay? 

Recently, I was shopping at Costco with my daughter – we had run out of milk which is a catastrophe in our house. We were discussing the merits of a clearance storage item when I suddenly felt very wonky and started to cold-sweat. My worst nightmare is to have a health event at Costco and there we were, health-event underway. I sat on one of their display sofas for a bit, visited the bathroom for reasons you can imagine without further explanation, sat on the sofa again, and then decided to wait in the car where I could direct air conditioning on my very sweaty brow. 

Alas, that was not to be as the car had a very dead battery. Yes, that’s right. A 90 degree day and a dead battery – so, back I went into Costco to sit on that convenient sofa. 

My daughter made sure I was okay on the sofa, did all the food selecting, checked out, and loaded the car. I took on the easier task of jumping the battery with our lovely battery charger (having one in the car is so unnecessary until your battery is dead!), with her providing the essential moral support because I was really going through something as we like to call it. On the way home, she even put up with the frigid car temperature so I could cool my very sweaty self. And then she put all the groceries away while I lay on the sofa. One of the silver linings, I guess, is having the opportunity to see my loved ones shine in my rather dark place. 

Next week starts my long chemo break. I’ll have scans in September and visits with my surgeon and oncologist in October. I wonder what our next steps will be.

Much love.

Mary Oliver Knows What’s What

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

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

Live Kindly

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If your insurance company has a medical chart option and you aren’t using it, what are you even doing with your life? Despite its convenience, as I look at the screen, I’m mumbling to myself that I don’t need to confirm every single time that: I know the balance billing act, my insurance hasn’t changed, I have no new meds within the last however many days it’s been since I received a test (one day – it’s literally been a single day since I last filled out their digital paperwork)…. 

Complaining about the efficiency of online check-in feels a little like Homer Simpson yelling at the microwave because 10 seconds is too long to wait for whatever snack he wants, except that visiting the doctor would not, under any circumstance, be considered a snack. Of course, there was that one time when I was NOT the patient and we had the hottest ED doctor (resident) I’ve ever seen. Seriously, I asked the nurses about him and they were like … YEAH, WE KNOW. And then I apologized for objectifying him which made him laugh. And that only made him MORE appealing. He was definitely hotter than McDreamy (is that the right nickname?).

Spring cleaning continues. Since my activities are still limited, I mentored Haley’s first foray into drywall. She did a fantastic job repairing the place in the ceiling that usually holds a light fixture. 

For those of you who weren’t part of the exciting beginning to that experience, a few months ago, the entire fixture threw itself out of the ceiling when I was changing a light bulb. We’ll be putting a new ceiling light up as soon as painting is complete. That part will be easy and fun because we found the most beautiful Victorian ceiling light at Construction Junction. It was $35. Seriously. We returned the somewhat banal light we’d purchased at some big box store.

We’ve finished scraping, spackling, sanding, and priming. We’re about to start painting actual color onto the walls and ceilings. There are a lot of moving parts. The painting has to be done before the largish throw rug arrives next week. Also, next week, we’ll get the carpet padding for our new-to-us/found-at-an-estate-sale-for-$100 rug. That thing is huge, somewhere in the 16’ x 11’ range but it’s a perfect fit for our living space.

We still need a bedframe for the guest room and then, we’ll be ready for our May visitors and any others who follow. There are two upcoming estate sales that have good potential queen bed options. I love buying used furniture with good bones on the cheap. Next week, the guest bedroom mattress arrives.   

A contractor is coming this week to look at my leaking shower floor – waterproofing is not one of my specialties. I gave it a try but we’ve still got a leak, folks, and that’s causing drywall damage in the second floor bathroom. We need to patch that in order to paint the bathroom and on and on. It’s beginning to feel like a Jenga game but I know we’ll manage. 

I’m still looking for a roofer since I fired-before-we-signed-paperwork the company that called every day, plus texted and emailed until I got annoyed enough that I told them we couldn’t work together. They wanted a 90 minute meeting. I told them I couldn’t currently accommodate that much time and they began pestering. UGH. Better to know upfront though.

It’s now week two of chemo session two. I’ve had a few icky experiences but mostly it’s been quiet this round. I’m tired. I have nightmares every single night. My joints ache. I’m finally healed from the second infection I managed to pick up since starting chemo. 

All of this sounds terrible, right? But you wouldn’t know to look at me that I’m taking 4000 mg of capecitabine every single day. Mostly, I feel pretty good, though I’ve gone off asparagus and lemonade makes me sick to the point of incapacity. Unfortunately, I drank about 4 ounces of lemonade before I figured that out.

I’ve had a couple people ask if I can do activities outside the house. Yes and … no. I’m doing lots of stuff in and out of the house but I have some limits. No standing for long periods – and by long periods I mean like 15 minutes. I sat in a chair or on the floor during scraping and sanding! 

No tea because it can prevent chemo from working. If I’m going through chemo, I am sure as hell not shooting myself in the foot by drinking tea. No large crowds. I’m not immunocompromised but I’m also not stupid. Large crowds increase disease likelihood so I’m keeping it small. Those of you who are envisioning that I look like the crypt keeper – yeah, well I sort of do but no more than I ever have. 

There are two songs playing on repeat in my playlist – “Be” by Hozier, acoustic because he said in an interview that it’s his favorite version of the song AND “Blackbird” by Beyonce. I think – don’t hurt me – that it’s better than the original. 

And finally, while I don’t have the link to the game bundle that includes SQUB, my son’s latest game, I will share it when it arrives in my inbox. All proceeds go directly to support at-risk young people. If you support the cause, check out the link and tell your friends. If you don’t, just keep moving because I block haters. 

If you want to support my boy’s game studio, you can just buy his game. 

And finally, one of the many lessons I’ve learned on this journey: I might not be able to determine my lifespan but I get to choose how I live with the time I’m given. And I choose to live more kindly today than yesterday. 

Much love. 

Live Kindly

Take Time to Smell … Paint Stripper?

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

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

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

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

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

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

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

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

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

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

Much love and time to smell the spring flowers.  

Take Time to Smell … Paint Stripper?

Free To A Good Home

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

Chemo Break Week – it’s like Spring Break without the alcohol, loud music, sunburn, and strangers trying to touch your butt. 

I’d love to say that day one of my off-week was incredible. I’d love to say that I won the lottery even though I didn’t play. I’d love to say that I can eat any food without it going straight to my thighs. You get the picture. Just be thankful you weren’t with me last evening/night. It wasn’t pretty. But enough about that. 

We’re spring-cleaning this week, while I have a little more energy. First, I do my daily writing sprints. Then, we work on cleaning up, cleaning out, and moving on. It’s a task my therapist recommended, something I dreaded, to be honest. But we’re finding it less difficult than I had expected. I guess we’ve gotten a clearer picture of what matters most to us. 

I know we could sell things but mostly we’re giving them away. That’s not some sign that I’ve received terrible news or anything. It just means that we want our living space more energizing and don’t see a reason to sell what can benefit others if freely given. 

In other news, my eldest son just finished developing a tabletop RPG that’s going to be included in a game bundle. All proceeds from the sale of the bundle will go directly to an LGBTQIA+ children’s shelter. I’ll give you all the details when the game becomes available. The entire bundle will cost $5 and will include somewhere around 500 games. Yep – that’s approximately $0.01 per game. Watch this space for the details if you’re interested in supporting an at-risk community and a great bunch of indie game developers.  

Tomorrow’s a big day – my round 1 chemo check-in with my oncologist. We have lots to cover – results of my latest bloodwork, the origin testing – gene tests that help determine if there’s something about my cancer that warrants special treatment, my delightful chemo side-effects, and … my weight loss (GULP). Should be a fun day. Might need a nap after.

Much love.

Free To A Good Home

How Do You Calculate …?

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

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

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

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

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

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

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

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

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

Much love. 

How Do You Calculate …?