Done? Done! Done... 1 year later!

November 9, 2023 Katie Smiley

One of the first questions that comes up during cancer diagnosis is “when will I be DONE?” The fantasy of my post-treatment life was the fuel that got me through the tough moments, so I had a lot of emotional attachment to calendar milestones. The most devastating moment of treatment for me was over a 1 week delay; my WBC count was too low for chemo one week so everything got pushed back. I wasn’t upset that I was sick; I was upset that I’d have to adjust my projected timeline. After a comfort rewatch of some GOT with my Dad, I cried into my keyboard updating my treatment database with a new “done date”.

But here’s the challenging bit. It’s hard to know when you’re “officially done” with cancer treatment. There are so many starting and stopping points through the different phases of treatment. Then even when you’re done, not only do you look and feel like a naked mole rat, you’re still going to be monitored, for years. Done is a state of mind and not all cancer patients get to hang their hat on that term. I was very fortunate that my treatment was curative and I got to fantasize about normal+ life.

I choose to celebrate TODAY, November 9 as DONE. On this day last year I got my last radiation treatment and rang that big ass gong. There were some other treatment bits after that, but this was the last thing that caused me uncomfortable side effects. After this day, I could just focus on regaining health and start filling the the enormous space in my life that was being a patient with all the things that make me happy.

But since Nov 9 is a somewhat arbitrary choice, here is a non-exhaustive list of some of the milestones I celebrated over the course of treatment and recovery (vaguely in chronological order)..,

Finishing egg freezing IVF with only 1 emotional breakdown over insurance issues and 1 embarrassing incident when I did a monologue on Henry Winkler while coming out of sedation!
Getting through my first chemo treatment with none of the worst case scenario side effects!
The first chemo appointment my team didn’t have to give me IV Benadryl as a precaution!
The first appointment with no major nausea because I finally figured out the diet/OTC drug ritual!
My last day of the first chemo regimen!
My last day of any chemo!
My last bone marrow stimulant treatment!
The last time I cried during an insurance conversation saying “I know this isn’t your fault, but this is harder than the cancer.” (pro tip: don’t switch jobs in the middle of cancer treatment)
Reintroducing hot sauce into my diet!
My first NED (no evidence of disease) scan post chemo!
My first post-treatment spicy marg!
Getting through surgery!
My first day going out in public without my wig!
My last day of radiation! (November 9!)
The first time I ran more than 2 miles since starting treatment!
The day I won the “who can hit their out of pocket max first” contest among my cancer community with 1 keytruda infusion on Jan 3 ($35K a pop)!
My last immunotherapy treatment and last infusion of any kind!
Full eye lashes!
The last day I neded to fill in my eyebrows to have facial expressions!
Getting my port removed!
First time finishing a 1 hr yoga class with no pain around my surgical site!
The first time I didn’t need a notetaker with me during a doctor appointment to help with brain fog!
My first 5K race again!
The day I woke up with clarity that “oh, hell yeah my hormones are back to normal!”
The first time I ate Chipotle again!
The first month with no doctors appointments or medical leave from work!
1 year post-chemo! (margs)
The first day my hair looked like a hair cut I would have chosen!
1 year post surgery!
My first ponytail!
1 year post-radiation! (today <3)
… more to come!

I did a podcast!

August 23, 2023 Katie Smiley

I had the honor of being invited to speak on communication best practices in healthcare user experience research. Give it a listen!

Some of my favorite communication best practices:

When it comes to complex subject material, it always helps that I’m never the expert. As a designer, I’m always brought in to be the outsider/novice. So I’m not emotionally attached to previous ways of communicating something and can trust my ability to pick out key insights from the noise. My goal is always to make something that feels simple that’s still an honest reflection of the true complexity.
- As a researcher, keeper of the data and the stories, it can be so difficult to edit out quotes or analyses that detract from your call to action. But just because you know it, doesn’t mean you need to show it. So you need to be a ruthless editor.
- To co-opt the Teddy Roosevelt truism, “Speak softly – and carry a big appendix.” If something feels extraneous, but I think it could come up in questions or be useful down the line, I create extra slides, or make my raw data/analysis accessible so that those who want to go down rabbit holes have every opportunity to without interfering.
Understand what type of appeal you’re making and be careful not to try to boil the ocean. I like to break down intent by “Head, heart, and hand.”
- Head – Is this about a gap in knowledge or understanding?
- Heart – Is this about aligning on emotions or motivations?
- Hand – Do we not know how to act on what we know and feel?
Listening can be such an undervalued aspect of communication. I’m disciplined in listening with intent to understand, not to respond. In my first year working in healthcare tech, the imposter syndrome was overwhelming. I was the least academically credentialed person in every room I was in and I was defensive – I asked questions to show them I know what I’m talking about. And that is a horrible way to connect and learn from people. If you can let go of your ego a little bit, people can be surprisingly gracious teachers.
Create space for people to ask “dumb questions” and model this behavior when others are presenting to you. Give people pause and permission to say when something isn’t clicking and be prepared with a fat appendix of alternatives. We have all been stuck in presentations where something technical goes over our head and then we kind of give up and check out. We blame ourselves instead of blaming poor communication. There’s power in confidently acknowledging what you don’t know. And experts love being asked questions; they want nothing more than to clear up that confusing bit from a few slides back.

Enjoying the Fruitcakes of Labor

December 12, 2022 Katie Smiley

Mid-December update from my baking corner, with a short love letter to a much maligned midwinter treat: the fruitcake.

The past few years I’ve been refining a fruitcake recipe on my Dad’s request. It was a favorite of his and he had a hard time finding a store bought one that met his flavor preferences. Luckily, this is my ideal challenge. I started with a NYT recipe and then gradually adapted it. I make it very cherry-forward and soaked in ample Whiskey - kind of like a Manhattan in a loaf pan.

As making this has become an annual tradition, I’ve found poeticism in fruitcake’s most suspicious quality: it’s shelf stability. Traditionally, fruitcake was made from the dried remnants of that year’s fruit harvest. It would sit on a shelf for a full year until it was ready to be enjoyed as the next year is about to begin. It’s still good if you eat it right away, but the flavors get so much richer if you give it time. You can enjoy previous year’s fruit, in its present form of fruitcake, while preparing to enjoy this cycle in the next year.

It’s shelf-stable time travel.

This symbolism is hitting harder this year because it’s been a banner year for challenging new experiences. Let the record show that while I don’t recommend switching jobs, buying a home, ending a relationship, and being diagnosed with cancer all in one week, it was survivable. But that was it, it was just survivable. So much labor went into this year, but that labor was spent on survival.

In December 2023, my cancer experience will be a full year behind me. It will not only feel more distant, but I’ll have had an entire year to take what I’ve learned from this fairly traumatic 2022 and channel it into something complex and wonderful.

It’s gonna be a great fruitcake.

Dad’s Nutty Bourbon Fruitcake

Ingredients

6.5 c. assorted dried fruit (lots of cherries, prunes, and apricots)
1 c. bourbon
5.5 c. mixed nuts (walnuts, pe- cans, brazil nuts, and cashews)
1.5 c. AP flour
1 t. baking powder
1 t. salt
6 eggs
1 c. sugar
2 t. vanilla
1⁄2 t. salt
3⁄4 c. bourbon

Instructions

Prepare fruit mixure 1–2 days in advance. Chop fruit evenly and soak in 1 c. bourbon. Cover and store in a cool, dry place. Stir occasionally.
Preheat oven to 300°. Grease and line a 9x5x3 loaf pan.
Chop nuts and combine with fruit mix.
Sift flour, baking powder and salt over nuts and fruits. Toss lightly until well coated.
Beat eggs, sugar and vanilla until fluffy and light. Pour over nut mixture. Stir gently to combine.
Fill prepared loaf pan, pressing cake mixture firmly so it fills the pan evenly.
Bake for 90-105 min or until a toothpick comes out from the center clean (1 hr for a mini loaf pan).
After removing from oven, brush 1⁄4 c. bourbon over cake. Let stand one hour. Invert and cool completely on wire rack. Soak with remaining 1⁄2 c. bourbon.
To store: Wrap in cheesecloth that has been soaked in bourbon. Wrap in heavy duty foil or store in tightly covered container. If cheesecloth dries out, dip in bourbon and rewrap cake.

Serving Suggestion

It is shelf-stable for up to a year, but I like keeping mine in the freezer. I like to serve mine lightly toasted with apricot jam!

It's nice to be petty: Body Image After Cancer

November 30, 2022 Katie Smiley

I want to begin by acknowledging my thin privilege. While I’ve never considered myself skinny, maintaining a doctor approved BMI has never been a struggle. I typically hover between 10-15 lbs over my ideal weight because (in stark contrast with the Kate Moss tagline) I think there are about 1 million things that taste better than being skinny feels. I genuinely love salad and other traditionally healthy foods, but also I love decadent meals and dessert enthusiasm is not an insignificant part of my personality. I will go through periods of regular exercise, when I’m feeling particularly into a gym class or motivated by a distance running goal, but I workout so I can eat what I want and stay active/capable late in life. I don’t love working out.

So that’s my behavioral baseline. And then I started cancer treatment.

So many things have happened this year that make me feel like I’m not in control of my body. Cancer is a weird violation of self-love and body acceptance because the “bad cancer cells” are still part of your body. It’s quite literally a cellular rebellion against the self. On top of that, I (fortunately) never had physical symptoms until my first suspicious mammogram, but that made starting treatment a head trip because I felt like my body was being upended for an imperceptible problem. Treatment felt like the cause, not the cure, of my problems. My hair, digestion/appetite, energy, mental acuity, etc. were all suddenly things I had no control over. I made my peace with so much of it during the thick of chemo, but now that things are ending and so much is returning to normal, I feel acutely aware of and fixated on the things that have not returned to normal. And my hyperfixation of the moment is my weight.

An incomplete list of things that affect weight during treatment:

Everything makes you unfathomably tired: The biggest side effect during all treatment phases was fatigue. I was zapped and drained in every way and I just didn’t want to do anything except play Zelda BOTW while watching Netflix. People love to point out that exercising in this state will actually reduce your fatigue and share stories about people who trained for marathons during treatment, but OMG * dramatic eye roll * PLZ STOP. It’s hard to get out of a fatigue spiral. I went from half marathon capable to incapable of running basic errands in 2 months.
Steroids: As part of each chemo infusion, I was given steroids to help my body offset the worst side effects in the 24-48 hours. This was amazing, but you know, steroids make your body retain calories like crazy.
I could only eat carbs: Many people answer the question, “what should I eat during chemo?” with “whatever you can.” My appetite decreased dramatically, but the only foods I had any interest in eating were carbs and occasionally cheese. Bring on the bread and crackers. Peanut butter toast, mac&cheese, broth-based soups, greek yogurt, and occasionally grain salads were my go-to staples. For digestive reasons I DON’T WANT TO GET INTO, I couldn’t eat the salad greens, veggies, and fruit I normally rely on.
Hormones and Menopause: My cancer experience began with fertility preservation. IVF hormones do a number of crazy things to your body, weight being only one of them. And then swinging in the opposite direction, chemo induces menopause. I am coming out of this now, but my hormones are all over the place. The hot flashes were the worst part of this for me, but it affects weight, mood, and a whole host of things in so many weird ways. If you know someone going through menopause right now, oh man, give them a hug and a cold compress. It sucks.

But now treatment is over. There is a type of cancer patient who goes a little orthorexic in response to cancer, who dives too deep into the "here’s how sugar feeds your cancer cells” type nutrition rabbit holes and focuses on eating “clean.” I am not that. Opposite.

I want to get back to my regular size and feel good about that, but but but also I missed my appetite soooo much and I just WANT TO EAT EVERYTHING. Cocktails, steak, various things deep fried and covered in spicy sauces and sugary glazes, enormous sandwiches, tacos, and pastry, so much pastry. My brain is just a looping video of Templeton the Rat’s Smorgasbord song from Charlotte’s Web. I want to give my appetite the time in the sun she deserves, but I also want to return to the body I had before the conga-line of medical care began.

And I know that, all things considered, I shouldn’t be hung up on what, in the grand scheme of things, is small number of pounds. This body got me through chemo, surgery, and radiation, shouldn’t I have emerged from this process with a new and profound sense of love and embrace of my body? But no, I have not. I’m cancer free, but I’m still a little bit petty.

In the continued theme of “cancer is not a lesson”, traumatic experiences don’t instantly turn us into zen masters. That’s the work that follows. My body still feels like an obstacle and for now I’m just going to sit with that discomfort as best as I can while I figure out a new relationship to health.

Emotional Lessons of Cancer

November 9, 2022 Katie Smiley

First off, I really dislike the armchair psychologist way cancer + mental health is commonly framed: “What doesn’t kill you makes you stronger.” or “You needed [traumatic life event] to become who you are today.”, etc.

I don’t think those phrases help you deal with the day to day reality of what makes cancer challenging. They encourage a goose chase for meaning in something that is just arbitrary and shitty. People aren’t “given” cancer as an emotional test. Sometimes things just suck. That could be interpreted as hollow, but it’s comforting to me. I’m allowed to be angry and I’m not obligated to ascribe cosmic significance to getting healthy. ALL THAT BEING SAID, I have indeed learned some significant emotional lessons in the last month.

A little bit of context on my emotional starting point before treatment:

My default M.O. is built around independence, self-reliance, and generally working overtime to not make my emotions other people’s problem. I’ll spare the full psychoanalysis on why, but it’s good split of innate nature, learned behavior, and general Midwest nice ethos. Thank you therapy for my continued progress on loosening this death grip.
I derive most of my self-worth from competence and productivity. I’m not a workaholic, this value can come from a variety places, but in general, I get fueled by the affirmations of perceived success/tangible outcomes and I can get really stuck by the guilt that I’m not contributing, working hard enough, or not solving problems.

… <insert cancer>… 💣

Overnight, I had no choice but to hard stop operating that way. I was gonna have to accept help, lots of it, and cope with my limited bandwidth at my new job. I had started “training” for a transition like this in therapy, but it felt like being forced to run a marathon after only reaching 5K status.

It was easiest for me to start with accepting help from family. My parents were along for the diagnostic ride and they didn’t give a choice to deflect their help for managing treatment (in the best way possible). I’ve struggled with the guilt for everything they took on and gave up as a result. This was my Dad’s first year of retirement; they should have exclusively been breaking in that Florida lifestyle and making progress on their travel wishlist. Instead, they’ve took over 25 trips to Chicago (in the winter), helped me get back and forth to appointments, handled dry ice/logistics/application of cold caps, meal stocking, cleaning, the list continues.

With so many acts, large and small, I’ve had to work on verbally redirecting the number of times I say “thank you” and “I’m sorry”. After a certain volume, those phrases get super annoying, but I feel compulsive need to continually acknowledge my appreciation. I keep revisiting the question, “Would I feel burdened doing this for someone I love?” and the answer is always no. It should not have been shocking that people are really nice to people with cancer and genuinely want to be of service to me, but wow, they are.

Managing my inability to do my job well, especially since no one had worked with me pre-treatment, was really hard for me. Chemo brain fog felt like my brain kind of knew the answers to things, but it was saying it in pig latin. Ancay ouyay aysay hattay lowersay leasepay? So much of my job is about the ability to process things quickly, interview people about things I’m not an expert in, and be creative in gray spaces, so the inability to think nimbly hit me really hard. I couldn’t trust if my brain could get there, if I was going to say something dumb, and didn’t know how to estimate how long things would take me which made me constantly worried that my coworkers were resenting how they needed to pick up my slack. So I had this added guilt and insecurity while also loosing the self esteem boost I usually get from work. I don’t have a neat resolution of this set of anxieties, but I’m rebuilding that confidence and have now learned that the world did not burn down as a result of me being at a lower capacity and that actually my definition of “lower capacity” is perfectly fine for most things. Not every year has to be one of explosive career growth. It’s ok for my brain to have been a lil on auto-pilot and lean on the people around me. I’d do it for them. <3