oral chemo

A Case of the Augusts

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

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

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

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

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

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