The Most Human Question

CoffeeSD · Recording: The Most Human Question

 

I think that anyone who is diagnosed with a serious illness will ask the question, “Why me?” Especially if the person is young, or if it’s a particularly debilitating illness, it seems all the more frustrating: Why me? What did I do wrong? How did I bring this on myself?

            I was told (immediately after diagnosis by the doctor who called me with the news) that there was nothing I could have done to cause (or prevent) this cancer. Others reinforced this idea, as well as the fact that there was nothing I could do to stop it. Without medical intervention, of course. However, it’s almost impossible not to question. It’s human nature to be curious. We need to know the answers; we need to know the why. I felt like I’d been cursed with a disease out of the blue; there had to be a reason. 
           I looked for anything linked to decreasing your breast cancer risk, and I’d already been doing all of it. I’d breastfed, exercised, didn’t smoke, and had a healthy BMI. For several months every year, I eat organic vegetables straight from my own garden and from the farmer’s markets in town; I was perplexed as to how I could find food any fresher or healthier than that. Still, I got cancer.

So, I looked up every known factor that could have led to an increased risk of breast cancer. Not a single one applied to me. Nada. I didn’t have even one risk factor, yet I still got cancer.

Doom-scrolling one day, I saw a message on a cancer support website that “Cancer doesn’t care”. The article described so many people who lived healthy lifestyles but who were still diagnosed with cancer at young ages. There were vegans, fitness instructors, marathon-runners…pretty much anyone you would imagine to be the last person on earth to be diagnosed with cancer. It was disturbingly comforting because it meant I wasn’t the only one that felt unfairly targeted by this disease. These people were healthier than me! They’d done all the right things, like me-- quite frankly, way better than me-- and they still weren’t out of danger. Still, it was a conflicted, confusing feeling that left me frustrated.

Part of the frustration was not having any answers. When I finally did get some sort of answer, it took me in an unexpected direction: I had a CHEK2 genetic mutation. The CHEK2 gene typically helps with DNA repair; in my case, at any time, some event could trigger my mutation and this gene would then choose to not repair my DNA and instead give me cancer. (Note that my degrees are in writing and teaching, not in genetics, so I may be missing some crucial details, but still-- who gave this gene so much power? Did nobody quality check the CHEK?) Unfortunately, genetic mutations are one of the few risk factors that people have absolutely no control over. And so, alas, I did have a risk factor, but one that I couldn’t change. The CHEK2 mutation is thought to lead to a 20-25% increased risk of breast cancer, as well as an increased lifetime risk of colon and possibly other cancers (more research is needed). It’s less common than the BRCA1 and BRCA2 mutations, which carry a greater lifetime risk of breast cancer and are more well known. Still, known genetic mutations are only the cause of 5-10% of breast cancers! (Crazy, I know.) Researchers suspect there are more mutations that simply aren’t yet known, but there is still a whole lot of mystery in the cancer world.

I saw this firsthand in my Young Survivor Coalition discussion group the other day. (We’re a group of women who were diagnosed with breast cancer under age 40.) The women were discussing the idea of stress or trauma as possible causes of cancer. Some of the women seemed to find comfort in this possibility; again, I think about that natural human tendency to need a reason for why bad things happen. Still, most of these ideas regarding stress were dismissed or disproved; we know that there are other causes of cancer out there, but we simply don’t know enough about genetics or all the possible environmental risk factors at this time. Maybe someday oncologists really will have all the answers; for now, they are well-educated guessers. (I mean that in the nicest way, of course.) They use the evidence available to make the best predictions possible, but it seems the real reasons behind breast cancer are still more murky gray than black and white.

As I continued to question why myself and these other young women were diagnosed with cancer seemingly out of the blue, I realized that asking myself these questions wasn’t going to get me anywhere. I could take myself on a downward spiral asking why bad things happen to good people, but I needed to focus my attention in a positive direction.

I felt more motivated to try to do something, even if all I could do were seemingly tiny things. Could I be positive influence on my kids and students? Of course. Could I try to bring joy and laughter to other people? Certainly. Could I donate a little time or money to others? Sure. Could I write something that makes a valuable impression on someone, even inspires them? I hope so. I considered what gifts I was born with and focused on how I should use them. Maybe I could even join my gifts together with others and make a greater difference in this crazy world. 

Maybe we don’t need an answer for our hardships; we need to create our own reason for getting through them. We need growth even when life forces us through regression. To me, going through cancer was a little like being a phoenix: I had to go through the fires of treatment, but I could still be reborn from the ashes.

All the Small Things: Life Lessons from a Survivor During a Pandemic

Last weekend marked one year since the original date of a concert I was going to attend with my youngest sister to celebrate being halfway done with chemotherapy. The concert was cancelled abruptly a couple days beforehand as everything began closing down (and has since been postponed two other times). I assume at some point, we'll get to go see the band play, although it's becoming more difficult to picture the packed Target Center. It's funny to think that if I'd bought tickets for just a slightly earlier date, we may have actually seen them last year.

Those first few weeks of the shut down last year, I remember feeling very oddly like I was in a movie. Specifically, a zombie movie. (Yes, that's right.) It may be because Zombieland: Double Tap was the last movie Eli and I saw in a theatre, but I swear for a while, the combination of my body falling apart from the chemo and the news making me feel like the world outside was falling apart had me peering out the windows like I was anticipating a hoard of monsters to come rushing toward our front door.

We never needed to barricade our door, though we did need to turn the news off after a while. Life went from shock to surrealism to something maybe akin to acceptance, and we kept moving along. There's a lot of nostalgia out there right now, but I feel like that can get in the way of growth sometimes. I'm sure some probably feel that they changed or grew (or admittedly, regressed) in some way this last year, and I think we can take a lot of what we learned to make things better. 

Especially as a kid but even as an adult, I used to picture life as a series of boring moments until something big and exciting would happen: holidays, large gatherings, a family trip somewhere, a friend's party. I would always find myself counting down the days until the next exciting *big thing*. I mentioned waiting for that concert with Andrea. When that was cancelled, I thought I needed something else to celebrate: I planned to visit some friends and have a night on the town! Then bars and restaurants shut down, and I needed a new plan again. Everything kept getting foiled until I ended up... like, simply toasting my husband with a beer at our kitchen table. I remember being so frustrated last March: wasn't it bad enough I had cancer and had to go through all this awful treatment-- now I couldn't even have any fun? But then I realized I had to switch my thinking around. It took a little time, but I started to really appreciate all of life's little boring moments. Honestly. 

Of course, it was difficult to have three small kids at home when I was going through all the cancer stuff. Really, though, it was a blessing in disguise. Little kids have such a unique way of looking at the world. They see the simplest things as wondrous. Something like reading a favorite bedtime story or sitting outside enjoying the sunshine on your back feels special, almost sacred. I've watched my kids be amused by an ant crossing a beach blanket or the sound of a leaf underfoot. When you pause like a child and live fully in the moment, it's actually difficult to be bored. I still love being over-productive, but I started to really enjoy all of the ordinary, seemingly boring days. We took little walks as a family and did chores together. I asked my toddler what he was building with blocks and we've helped each other design a bunch of different "robots". I asked my 6-year-old to pick out a book for us to read together, and he now brings home a few of our favorite series each week from the school library. The baby and I spent (and still do) a lot of time admiring the different birds eating in our feeder and our chickens in the backyard.

I think joy in the ordinary things is probably three parts living the moment, one part empathy, because you have to occasionally embrace empathy to enjoy something a small person wants to do that you may find dull. For instance, reading "Mighty, Mighty Construction Site" for the hundredth time with my two-year-old is not exactly thrilling to me as an avid reader, but when I see his eyes light up, I make the truck noises and bounce him along to the rumbling construction work. He is having his best moment, so that can also be my best moment. 

This past year, so much interaction has moved online. I've seen a lot of people argue, grow bitter, or belittle others. It was hard to see society seemingly growing more distant and hard-hearted, especially when I felt like I was moving in the opposite direction. Talking to other survivors, I've found a common thread: cancer seems to make a person more empathetic, as you can suddenly relate to emotional, physical, financial, etc. pains of so many others. But of course you don't have to go through cancer to feel empathy. When we have our "keyboard warrior" weapons out, it's easy to say things we wouldn't in person. 

Still, it doesn't have to be that way. I've looked more carefully at some of my students' emails this year, especially ones that I would be quick to consider "rude" in previous years. Tone is tough online, and everyone is going through something weird and difficult; it isn't that hard to think it through and be more understanding. We've heard it a lot, but it still applies: walk a mile in someone else's shoes. We don't always all agree, but taking the time to listen can go a long way to understanding. I've always thought I was a good listener, but lately I've been doubling down. I'm shy around new people, and I've wondered in the past if that makes me less approachable, but this year I've found myself just being myself a bit more wherever I am: in my virtual classroom, at the doctor's office, online-- asking people how they're doing and sharing something that I hope makes them laugh. I'm appreciating the beauty in everything small, from acts of kindness to simple conversation. 

"Magic Bridges"

If you know my writing style, you'll know that I don't typically gravitate toward poetry, but I've also found it very healing this past year as I complete cancer treatment during a pandemic. This poem was partially inspired by a student from my Creative Writing class who was comparing magical realism to historical fiction one day. 

I wonder about the magic of our own histories,

How we brave pain with a deep breath and

dash of imagination.

Neuropathy tingles in my fingers like a

spell for release

This toxic IV is a paradox of healing:

         a magic potion extending my life

After the doctors cut me open,

          did they stich me with gemstones and rose petals?

A machine whispers a vignette of fire,

                you kill a bit of yourself to kill this disease.

Can I wrest every last cancer trope out of Hollywood

and trample them beneath my boots?

Can we cover our every scar beneath ink,

like murals over broken bridges?  

I've walked miles in a soul grown old too soon,

but my soles will continue to tread this ground. 

We each tell our own story,

    measuring out how much history, 

        how much magic.

Sarah’s Oversimplified Guide to Breast Cancer

Throughout this year, my understanding of my own cancer (and cancer as a whole) has kept evolving. A year ago today, when I first got the call, all I could think was “WHAT?!” amidst the buzz of white noise in the background: “Am I dying?”

The average person (unless they happen to be an oncologist) really doesn’t know much or think much about cancer. That is, until they or someone the know has it. It’s inevitable that you’ll someday know a woman who has or had breast cancer, whether it’s a family member, a colleague, a friend... There are men who develop breast cancer, too, of course, but it’s a much smaller chance: 1 out of every 100 breast cancers diagnosed is found in men.

I know that I didn’t think much about breast cancer at all before my diagnosis. I’d been tuned into it a bit more because, the year before my own diagnosis, a friend and coworker of mine was diagnosed. I’d seen her do so well with treatment that I realized there must be more to this word “cancer” than my automatic fearful assumptions. Don’t get me wrong-- it’s still probably some of the most distressing news you can receive from your doctors, but although not yet considered “curable”, most cancers are more survivable these days than ever before. Metastatic breast cancer, also called stage 4, is the only kind of breast cancer that kills, because it has spread to vital organs. My husband and my dad both came to my first appointment with my oncologist, and my dad had asked him the prognosis. He replied that if the disease had only spread regionally (we already knew it was in at least one lymph node in my underarm), it was “essentially curable”. If it had spread to vital organs, he noted more quietly, I had approximately “3-5 years”. 

There are technically 5 stages of breast cancer: stage 0, 1, 2, 3, and 4. Scans a few weeks after my initial visit verified that the cancer hadn’t spread beyond my lymph nodes, so due to the large size of the tumor, I was considered stage 3. Stage 0, ductal carcinoma in situ, is technically not cancer but a pre-cancer stage. If a person is diagnosed with stage 0, though, they’re not out of the woods. They will likely have to undergo a mastectomy or lumpectomy and radiation because it will become cancer eventually; preventative surgery is the best way to stop it. Stage 1 is when one or more tumors have been detected in the breast but have not yet spread beyond the breast tissue; stage 2 and 3 are similar, but stage 3 means the tumor is larger and/or more lymph nodes are involved. Stages 2 and 3 usually require chemotherapy to stop the cancer from spreading; at stage 1, doctors will use other information to make that decision. Neoadjuvant chemotherapy is when you receive chemotherapy before surgery to shrink the tumor and stop the spread; adjuvant is when you receive chemo after the initial treatment, to destroy remaining cancer cells. My plan involved neoadjuvant chemotherapy, which started two weeks after the birth of my son (because post-partum life isn't difficult enough, right?).

Left: The day I received my diagnosis, Dec. 30, 2019
Right: Dec. 2020, post-treatment and "NED"!

There are other considerations besides the staging of breast cancer. It’s a cancer that can often be driven by hormones, so many women have ER+ or PR+ cancer, which means that their estrogen or progesterone are driving the tumor’s growth and spread; they will usually need to take other medications or chemotherapy to stop this type of cancer and to prevent their cancer from returning. They may also need or be encouraged to undergo additional surgeries, such as a hysterectomy or oophorectomy; they would discuss this with physicians. There was also another factor contained in some breast cancers, a protein called HER2. This protein was discovered in 1987, the same year that I was born, and it would turn out that this is the type of cancer I was diagnosed with. My tumor was ER-/PR-/HER2+. Just a couple decades ago, this type of cancer was feared; today, I could almost see my oncologist’s sigh of relief at the pathology report. There are chemotherapy drugs these days that are really good at treating this aggressive form of cancer. For instance, my tumor was larger than 10 cm and seemed to have tripled in size during the three months when I first noticed something was off and when I was finally able to begin treatment. However, during chemotherapy, the drugs basically incinerated my cancer, and there were no remaining traces of my tumor during surgery. Thus, the doctors say I had a “pathologic complete response”, a pretty amazing response to chemo. It’s not unusual for patients who have HER2+ breast cancer to respond really well to chemotherapy, but it seems to be most difficult to effectively treat patients who have triple negative breast cancer (not ER, PR, or HER2 positive); though they certainly can have a good response, more research needs to be done to help patients in that scenario. Of course, the most research needs to be done for women with stage 4 cancer, whom cancer impacts daily.

As a stage 3 patient with HER2+ cancer, I received six rounds of neoadjuvant chemo, a mastectomy and removal of five lymph nodes in my underarm, and 25 rounds of adjuvant radiation. None of those treatments alone should be taken lightly, and together, they can really wreak havoc on your body. Still, they are preferable to dying.

So that’s breast cancer in a nutshell, from an English teacher/writer/kickass survivor mom’s perspective. I’ve learned that, though I am now considered cancer-free, doctors can never guarantee that surgery, chemo, and radiation destroyed all of a breast cancer patient’s stray cancer cells. This is why they don’t typically say someone is “cured”, but instead use the terminology “NED” or “No evidence of disease”. 

They watch patients most closely the 5-10 years following the completion of the treatment plan because that’s when any microscopic cancer cells that, if they were missed, will reveal themselves as they settle somewhere else in a person’s body. That is probably the most terrifying thing about being a cancer survivor: you can never know with 100% certainty that the cancer is gone. Headaches, bone aches, and other pains can leave you wondering if it’s the cancer recurring in a place where it can’t easily be fought or removed. This is why many doctors will prefer a more aggressive treatment plan; they want to eliminate that potential for recurrence. 1/3 of women who are diagnosed with early stage breast cancer will go on to become metastatic, and that often happens 5-10 years after their initial diagnosis. My oncologist reassured me that, with my response to chemo and my team’s aggressive plan, my odds of recurrence are less than 6%, which sounds promising. I’ve also told myself that I can’t spend my time worrying. I’d rather do something fun-- spend time with my family and friends, go outside, walk, write, read, travel, dance, live-- whatever it may be. Cancer sucks: there is no way around that, but you can look at it a thousand different ways. I am going to choose to look at it as a rebirth. I can take this time to appreciate everything more, knowing that every day is a chance to do something meaningful and special, no matter how small or simple it may seem, and to look for opportunities where I can make a difference for others.

Sources: 

Radical: The Science, Culture, and History of Breast Cancer in America by Kate Pickert

Twisting Fate: My Journey with BRCA-- from Breast Cancer Doctor to Patient and Back by Pamela Munster

My team of doctors, nurses, etc. at Mayo, who patiently answer all my questions

Young Survival Coalition Facebook group's women, who have so much to share

3rd Annual June Writing Challenge!

In April and May, I didn't write as much as I'd hoped. I think I was in survival mode. I don't say that to be dramatic; I think trying to power through chemotherapy just took a lot of my energy, and what was left over went to my family and job. Dealing with a pandemic probably didn't help. My creativity seemed tapped out, too. If my energy was one of those bars in a video game, it would have been flashing under my character, signaling immediate need to replenish.

As May ended, I felt able to dive back into my writing. I did a lot of reading from so many different perspectives, which I think helped, and my family and I took a little trip with a lot of fresh air. It also probably didn't hurt that the school year wrapped up and I was able to come up for a breath from under the last-minute rush of student work. In short, June has been a much more productive writing month!

Last year, I did my 2nd annual "June Writing Month", since November is too busy for teachers, as I like to say. I have been writing a lot this month. I've gotten about 20,000 words down in a new story that I've been writing, bringing that manuscript to nearly 40,000 words. It's coming along nicely, and some days I've gotten into a nice flow where the words are dancing onto the paper (or the screen, I suppose). It's so refreshing after the tapped-out feeling of April and May. I'm going to keep moving along with my writing next month, as I've learned there is actually a Camp NaNoWriMo in July! How on earth did I miss that? Well, I've joined in now, and I'll be looking for writing buddies at Camp if anyone's interested.


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This new story was partially inspired by the cancer diagnosis, so I guess there was some positive light shed there. Without getting completely into it, I will say that it's sort of a superhero story and sort of a thriller, with speculative elements thrown in. The narrator's experience is somewhat similar to mine. I have a ton of thoughts about this story right now, and I'm not 100% sure how it's going to pan out, but I've done my usual outlining and a lot of free-writing and typing, typing, typing. While I'm not certain where exactly it fits genre-wise, I'm really excited about it! I think it also helps to distract me from the wait for surgery right now and the uncertainty of whether or not I'll have to go through radiation as well later this summer. I'm going to keep on writing, regardless, through cancer and beyond.

Breast Cancer Warrior: When You Want to Know Everything

One thing you might know about me is that I love learning. I guess that's probably a big part of why I'm a teacher. I always want to know more about a topic, whether it's related to my career or not. Sometimes this has gotten me in trouble. I would occasionally morph into "Harriet the Spy" mode as a kid, trying to overhear something intriguing or wander into places that were off-limits with the thought that I was having some sort of grand adventure or solving a mystery. Looking back now, I realize I was probably being annoying, but I was just ridiculously curious.

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I still have an obsession with learning. Although I already have a Master's degree, I'm seriously considering going back to school again (not anytime soon, but some day) to learn more, and you can bet I'm going to take advantage of the plethora of free online courses and teacher resources I see being offered this summer.

My obsession with learning comes into play with cancer, too, and I sometimes feel like I'm back in that childish spy mode again when I'm struggling to learn more about what the heck is going on in my body, as if I'm trying to find out more than I really should or like I'm going in the wrong direction.

The hard part is, at least from what I keep hearing, every cancer is different. So, theoretically, you could learn all there is to know about breast cancer but still not fully understand your own breast cancer. I'm finding that my doctors will take the time to explain things to me, which I appreciate, but that I always leave appointments with more questions. They answer the "how" and the "what", "when", and "where" really well, but I find that I always have more "why" questions. And maybe those are ones that doctors just don't answer or that are the toughest to answer or maybe they don't really have an answer. Like, "Why did I get cancer?" The one who came closest to answering that was the genetic counselor, who explained how a mutation in my gene made me more susceptible to this situation, but I'm not sure if there's an actual answer out there for why this happened to me at this particular time in my life. It's borderline frustrating to me, the endlessly curious, to not have an answer to this.

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I guess the "why" is the toughest question to answer in any situation. Those are the ones that can sometimes stump me in the classroom, like the students who ask, "Why do they call it a 'gerund'?" or "Why do we have to do MLA citations like this, but they do APA citations like that?" Those are the sorts of questions I usually don't know off-hand-- the ones I have to research after class so that I can have an acceptable answer for our next meeting. And sometimes there are more complex questions that don't have a simply answer or that have multiple answers or that simply can't be answered.

And I'm not sure if some of my questions can't be answered or if they could be, but with extra research and time. Sometimes I ask them, but sometimes I don't-- either because I don't think of them until later or because I can't think of a way to ask them in a logical way in the middle of an appointment. As I keep moving through this whole cancer journey, I think maybe I'll become better at knowing which questions to ask.

I hear a lot from my doctors about "the standard" for treatment and details about what the treatment does as well as a lot about "being aggressive" in treatment, but those aren't necessarily the types of answers I'm looking for when I ask my "why" questions. I guess, maybe, sometimes, I just don't hear the answer I want or maybe I'm not even sure what I want to hear. Maybe my constant curiosity comes down to this: even after my question is answered, I'll want to ask it again from a different angle until I feel confident that I know more about the topic. Maybe I'm still that annoying "Harriet the Spy" wannabe, or maybe it's just my way of dealing with this tough situation. Either way, by the time this is all over, I'm sure I'll have my own answers to these "why" questions-- I just hope that I get them right.

Breast Cancer Warrior: Breaking Point

What's your breaking point? I feel like this is a question that has been explored a lot recently with COVID-19 taking over our daily lives and creating a lot of uncertainty about our health, finances, and future. This upheaval stretches and stresses us beyond what we think we can handle.

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When I was first diagnosed with cancer, I found that my breaking point was a question I thought about a lot. Would I be able to handle treatment? Then, as I got to thinking about it a bit more, I realized that I didn't really have an alternative: I would have to go through treatment if I wanted to survive cancer. It wasn't really a choice. I realized, though, that there are a lot of places where we can gain strength even as we approach our own breaking points. We don't have to do anything alone.

Now, there are plenty of reasons to break down. I like to rant sometimes because I think it can help, so here's my rant: I HATE CHEMO!!!! (Yes, I do need all those exclamation points.) I started chemotherapy only two weeks after my son was born; postpartum check-ups to resume normal activity don't even happen that early, so I feel like I totally drew the short straw there. Cancer is a thief in many ways, including stealing my energy and freedom. I spent a lot of time in my house in January and February thinking to protect myself (and Corey) from the flu, just to find a new and worse virus circulating the world as it starts to warm up: cue extreme cabin fever. I feel extra trapped during the stay at home order because of my compromised immune system, and now I get anxious thinking about going places when I normally, weirdly, actually enjoyed running errands. Chemo only gets harder as I battle through each round. And those side effects-- everything tastes like chlorine to me right now, my eyes and skin are as dry as a desert, and I feel sore and sick and tired. Last week, I took a short drive because I needed at least a mini change of scenery; I decided to scream as loud as I could to let the frustration out, but it just made my sore throat hurt worse. BLEH!!

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There. Rant over. Whew. So, I've had an extra tough year, and it's only April, but I've been thinking about how we keep going despite the tough times. Embrace your own rants. Whine about everything that went wrong this year and scream out the car window. I'm no expert, but I feel like it's good for you. Then, shake it off and make a plan of action. Realize this moment is not forever, and that we can look back and, maybe not laugh, but at least sigh and say, Thank God that's over! And probably cry.

Your "plan of action" can be actual physical action that you take, or, what's been tougher for me to accept, non-action. Sometimes you just need to rest and rely on everybody else for a bit. Some of my best supports in this time have been friends and family sending letters and food and other thoughtful items, keeping me in their prayers, simply calling or messaging more, and letting me know that they're behind me. Somehow it makes me feel stronger than I really am. Instead of a being an average-sized woman, I feel more like the Hulk when I walk into the clinic. It's cheesy, yes, and you know I'm gonna find a Hulk dancing gif to put in here now. There we go:

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Knowing I've got my team behind me makes me feel stronger. I'm notorious for wanting to do everything myself and for taking on too much, but cancer treatment isn't something you can take on along with a ton of other baggage. You'll get burned out. There's that breaking point again. So as cliché as it sounds, I'm learning to let go and rely more on others. If you're like me at all, or if you're just feeling stressed from all the chaos in our world right now, I hope that can help you, too. Maybe you can picture yourself as a superhero, too, if it helps. On the days where I feel small or weak, I can imagine Hulk Sarah strutting into Outpatient Services, slurping up a Docetaxel cocktail and smashing the IV stand while roaring in victory. Or, you know, just calmly and quietly doing my chemo like a normal human while being tough on the inside. 😉