Walk & Talk about #PitMad

Here's my second little "walk & talk" video about writing. This one is about writing events like #PitMad on Twitter. You can learn more about #PitMad here.

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The Querying Journey

I had the idea of creating more of a vlog than a blog starting this summer, so here are the two parts of my first vlog attempt below (interrupted due to phone storage issues AKA having 8 zillion pictures of my kids). In it, I'm discussing my new adventure into the land of literary queries after a several-year hiatus. For my non-writer friends, querying is the process of reaching out to these gate keepers of the publishing world (AKA literary agents) to hopefully get your book noticed by the big name publishers. 

I have been writing A LOT lately, at odd hours of the day and night, when not working or spending time with my kids. And I wrote more than I could ever have imagined during cancer treatment last year. Hence, this new journey begins:

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Link to Video 1

Link to Video 2

The Power of Reading

CoffeeSD · The Power of Reading

 

Each year, when I ask students what sorts of things they like to read, some of them inevitably tell me, “I don’t read.” I’m going to make a bold statement here and say that most problems in our world could be solved if people at all ages would read more often. It may sound like I’m being dramatic, but I’m 100% serious! And I have scientific backing.

Reading improves fluid intelligence, which is the ability to think critically and to detect patterns. It also establishes additional neurological connections and shows a likely link between reading and significantly higher IQ scores. For children especially, reading can make a significant difference in their future ability to make valuable brain connections. When a child doesn’t read, it creates a vast gulf that the child will never be able to bridge as an adult.

It may seem obvious that reading makes someone more intelligent, but there are other differences between readers and non-readers. Countless studies have shown that not only does reading relax people and help them sleep better, it also makes people more empathetic. Reading fiction in particular has been shown to boost compassion and create a more charitable mindset. Naturally, having a world in which more people are empathetic and compassionate would eliminate countless problems that exist, such as bullying and discrimination, as well as build larger-scale philanthropy that could eliminate issues as complex as world hunger and cancer. There are also direct connections between reading and future career potential as well as reading and broader social skills. Reading basically makes you a superhero.

                These are all reasons why I get so passionate about reading! Clearly, reading is a big deal. Maybe it seems a bit extreme, but I’d argue that going without your daily dose of books, especially as a kid or young adult, can actually be more damaging to your health than a daily sugary soda.

                When I think about the power of reading, I consider my struggling students, especially the ones who need so much more support than I can offer during our individual meetings every week. I wonder how much of a difference it would make if society placed a higher value on reading, if every parent pulled a book out each evening before bed.

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