xeloda

Walking a Razor-thin Wire

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

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

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

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

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

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

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

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

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

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

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

Much love.

Walking a Razor-thin Wire

Mary Oliver Knows What’s What

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

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

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

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

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

Humans Only Have One Ending

Deb Zuroski, , , , , , , 1 Comment

I was working on a day-in-treatment blog post, thinking it might be useful to someone on the interwebs, but it was so boring I didn’t finish, deeming a nap more interesting. 

Instead, you’re getting a detailed retelling of one of my epic post-surgery dreams. What I remember is that I was sitting …. Yeah, no. I’m not doing that. I HAVE had an incredible number of seriously epic dreams in the last month, which seems to be very common after major surgery. By epic, I mean, they’re like whole-ass movies, even though they’re actually rather brief. I’m not sharing them, though, because dreams suffer in the re-telling. 

Disappointed that you won’t be getting dream stories? Sorry. They’ll cool and all but we need to talk about something important. Are you ready?

Even though I told you not to, you’ve Dr Googled my diagnosis. You’ve seen the survival rates, haven’t you? Don’t try to deny it. I can tell. I too know the survival rate is in the teens because I got my biopsy results a full week before my follow-up appointment. Do you know what it’s like to sit with that kind of information – keeping it to yourself – for a full week, probably longer, while trying to interact in a normal way with the people most important to you? You probably don’t. 

The truth is that I read the biopsy report late at night, sitting in the broken down old recliner – my husband’s favorite chair – where I slept because I couldn’t yet lie flat. And yes, my heart sank a little when I saw “carcinoma.” I immediately searched the word, struggling to spell it correctly. I wanted to know what cholangiocarcinoma was. The 17% survival rate seemed to shout from the laptop that couldn’t yet rest on my lap because, even now, I have tender, healing robot holes. 

I have cried exactly once since I first saw the liver lesion on my MRI results. It was December. I was walking to the coffee shop to work and had to take a break on a bench down the street so the tears could fall unseen by the baristas. I didn’t cry for me but for my children who were going to be devastated if I had cancer. It’s the only time I have felt like crying because Dr Google only tells about 1% of the story. It’s useful for advocacy and for support but it can’t tell you what my doctors know.

The difference between us is important: you have a web browser and a search engine, whereas I have those AND a care team. Until you have the latter, you don’t have the whole story. 

Some of you have been in those oncology conversations, just as I was with my husband. Oncologists don’t sugar-coat. They don’t talk in percentages and they are straight shooters. We knew at our first appointment that Ken was terminal. Guess what I did NOT hear? Yeah, I did not hear that I’m terminal. 

I’ve told you all before that I, too, will give you the straight truth and I am. My doctors are absolutely delighted, smiling and excited about my prognosis. I don’t currently have any cancer in my body. My chemo is preventive. It might become a regular feature of my life. I don’t know and won’t know that for at least six months. 

There’s a lot that none of us know: how I’ll respond to chemo (since I’ve only been on it for seven days); who will win Lord Stanley’s cup; how many temperature records we’ll break this year; when each of us will die. 

So, that being said, my friends, stop being weird. I am exactly the same person I was last year at this time. I could drop over dead tomorrow or celebrate my 90th birthday or anything in between. There is no terminal diagnosis. Someday there might be. And if there is, I’ll tell you. 

Believe me; I appreciate you and your well-wishes more than I can say. It’s still a huge journey and the risks are great. That said; if you talk to me like I’m a walking corpse, I will make fun of you.  

Now, how about a few pieces of news? I’m back to working on my latest book. It had to wait a bit until I could sit up comfortably, stay awake, keep my brain working, hold a laptop, etc. I need to get it done before chemo brain fog sets in but I’m at somewhere around 60,000 words so that’s absolutely do-able. 

I’ve been walking with my daughter and our dogs as the weather has improved. The dogs are more tired than I am afterwards and we’re all appreciating warmer days. I’ve finally finished two of my medications. And after weeks sleeping in a chair, I can lie flat to sleep and have moved back into my bedroom, two steep flights of stairs (approximately 44 steps) from the living room where I spend most of my day. 

These accomplishments may seem small to you but I remember that first attempt to put on my shoes, touch my toes, pour a glass of juice for myself. And I’m delighted to be exactly where I am right now.

Much love.

Humans Only Have One Ending