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.

via GIPHY

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!!

via GIPHY

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:

via GIPHY

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. 😉

Breast Cancer Warrior: My Chemo Playlist

Before I went in for my 4th round of chemotherapy early last week, I'd learned that I wouldn't be able to have any visitors due to new coronavirus restrictions. I met friends and family via Zoom, which was so helpful, but I also came prepared with my chemo playlist to help distract me.

Each song has its reason for being on here, which I've noted below. I have a tendency toward alternative and punk rock, and it's been that way for as long as I can remember.

1. This is how I feel some days during or shortly after chemo: Green Day: "Brain Stew".

2. This is how I feel some other days (usually right before another round): Florence & The Machine: “Dog Days Are Over” This song is also on here because Florence Welch is a cool ginger, like myself. ;)

3. The Lumineers: “Big Parade” is on the list because I was supposed to go see them in concert with one of my sisters as a celebration of getting halfway through chemo in mid-March. Unfortunately, COVID-19 crushed those dreams, and I had to celebrate small (i.e. my favorite beer and a new show on Netflix).

Since I was daydreaming of concerts I'd like to attend, I did get to see these two bands in person last fall: 4. Black Keys: “Gold on the Ceiling” and 5. Modest Mouse: “Dashboard”. Both of these songs rocked at the concert, so they made my list.

6. This video includes joyful dancing and somewhat psychedelic colors, and I always find the Yeah Yeah Yeahs' music oddly soothing: “Turn Into”.

7. This one sums up how I'll probably feel when I'm done with treatment: Imagine Dragons: "On Top of the World". I also put 8. "Thunder" here because it's my kids' favorite song and brings to mind their crazy dance moves.  

9. "We Will Become Silhouettes" by The Shins. I think the lyrics make this one a bonus quarantine song.

10. Finally, any playlist about being strong during tough times needs a survival song: Destiny's Child: "Survivor"

Breast Cancer Warrior: Chemo in the Time of Coronavirus

Every news story I've watched or read the last two weeks has included some angle about the coronavirus. It’s insane how intensely (and how quickly) this has impacted the lives of everybody. “Social distancing” is the new lifestyle, and, at least here in Wisconsin, most places have closed, including libraries, schools, bars, churches, malls, and gyms, and other places are operating with restrictions, like credit unions that are only using their drive-thru area or restaurants that only offer pick-up service. It's unnerving to see so many shutting their doors, but I did read an article this weekend that offered the hope that if we do this whole "social distancing" thing correctly-- and quickly-- we'll be able to get back to normal sooner than later. The same article describes a rather bleak outlook if we don't do this right, so I'm trying to think positively. Still, I think it's fair to say that this is a rather troubling time. 

via GIPHY

It’s especially frightening when dealing with cancer and chemotherapy amidst a health crisis. Chemo has weakened my normally not-so-bad immune system to the point that I’m still dealing with a cold that I had when I started chemo nearly two months ago. To be fair,  I think most of my symptoms from my cold are finally gone-- maybe it’s truly leaving!-- and I am just dealing with an extremely runny nose (which I'm partially blaming on the fact that all my nose hairs are now gone). One odd phenomenon about these closures is that, with chemo and a newborn, I was already not going out much. I was trying to keep Corey and me both away from germs as well as needing more rest than usual from the effects of chemo. Now, with everyone else stuck at home, I feel oddly more connected. In facing a pandemic, we're suddenly all in this boat together, in a weird, distant way.


via
Times like these can bring out the best or the worst in people. I'm sure everyone's seen frustrating stories about people who are hoarding toilet paper and cleaning supplies, but I've also seen a lot of positive stories in my own community. In a local Facebook group, residents have been asking if their elderly neighbors need someone to grab groceries or supplies for them for them or if people who suddenly have their children at home need free assistance with childcare. I even saw one local family leaving a table of canned goods and paper products out in their driveway for any neighbors in need. Stories like these show how a crisis can bring out the best in people.

When I first saw COVID-19 spiraling closer to home, I found myself thinking, "Seriously?! Can we not do a global pandemic when I'm going through chemotherapy?" The timing was ridiculous enough that I wasn't sure if I should laugh or cry.  (I mean, for real, what are the odds?!) Then, I quickly realized that everyone has their own issues that they're facing during this crisis, whether it's a health issue like myself...or being laid off for an unknown amount of time...or facing additional stress if your job takes you to the front line in battle against the virus...or fear if you find yourself ill....or even simply feeling disconnected from others when you can't go about life as usual. We all have our unique struggles, but we can unite to make them less difficult. I was comforted by all of the people who reached out to me when they heard about my breast cancer diagnosis, and I hope we can all reach out to one another as we together face this unprecedented time. While keeping a six-foot distance, of course. ;)

Breast Cancer Warrior: Two Under Two Plus Cancer

I had a really weird dream the other night. I was in a dimly-lit room, a combination movie theatre/computer lab/lecture hall. A large projector screen that took up the entire front of the room, and rows of desks and swivel chairs led up a staircase toward the back of the room. At a front table separate from the rows of desks, I stood beside people who, despite their different appearance in my dream, I knew to be the oncology staff. My doctor was explaining the results of another test, which were projected on the huge screen-- some colors and shapes on a skeletal outline.

For some bizarre reason, I was also trying to teach my students at the same time from this position at the front of the room, though they weren't just my college or high school students. Students of all ages were coming up to me and asking about schoolwork that they had on their own computer screens. Some waved me over to desktop computers that were anchored to the desks; others carried tablets over to me. I moved throughout the room to assist everyone. Many were calling my name and asking questions at the same time. Then, the big screen that was supposed to be showing my test results kept switching to math equations and reading selections from the students' computers. (I don’t know why my dream students were asking me to solve math problems-- they were going to be sorely disappointed with the results.)

During all of this chaos, the doctor and nurses followed me around, trying to get me back to the front of the room. Whenever the screen switched to a student’s work, the doctor and nurses had to try to figure out how to get my results back on the screen. At one point, a small kid ran over asking for help with his iPad, and I realized it was my oldest son, Rayden, but with red hair. I showed him how to type out the letters to move a little mouse icon across a huge ditch -- some kind of game he was playing. When I turned around, there were now two new doctors telling me that they couldn’t see my test results here and that we needed to do another test instead.

I felt like I was being pulled in multiple directions throughout the dream-- from the doctors to the students asking questions to my own son wanting help with his little game. I remember my head turning back and forth throughout the dream, always spotting someone demanding something from behind me no matter what direction I turned.

I woke up with a start. When I recounted the dream to my husband, minutes later, I realized aloud that it was basically my life right now: being pulled in so many directions. I laughed. It hadn’t been a scary dream, just a vividly realistic and slightly off-putting one. I guess I do feel that I’m being pulled in different ways and that I don’t always have control of the direction. I’m not sure if my subconscious thinks I’m handling it well or not the way the dream played out. 

While they weren’t present in my dream, my two youngest have pulled me in different ways, as well. Not in a bad way. Just in a busy way where I spend a lot of time feeding tiny people, cleaning up after them, and changing diapers. I enjoy watching my kids’ antics. The other day, after bath time, when I thought my middle child was snugly wrapped in his towel toga for a second so that I could grab a glass of water from the kitchen, he suddenly came dancing in, completely naked, playing a toy harmonica.

Moments like this, I can’t help but laugh. It’s entertaining to watch all three of my kids interact, too. My oldest asks nonstop questions, both serious and humorous, about everything under the sun, from his schoolwork to my appearance to philosophical ponderings about life and death. My toddler’s favorite pastime is pulling all of the puzzles and board games off the shelf and spreading the detritus throughout the house. Even the newborn watches his brothers with wide eyes, taking it all in, probably learning how to pull a book off the shelf at the perfect angle so that all of the other toys come tumbling down, or how to smash banana bread into clothing at the right consistency so that it doesn’t come off.

While it can be chaotic, I think it’s also comforting. It might be easier to feel more down about the cancer if I wasn’t watching my kids cuddle (or, let's be honest, wrestle is probably a more accurate word most of the time, but I swear they're wrestling in a loving way). I can look around my house and see that I have my own little team of supporters right at home with me every day, cheering me up, making me laugh, and keeping me busy-- usually all at once.

Breast Cancer Warrior: My Unresearched but Maybe Somewhat Helpful Guide to Dealing with Postpartum Chemotherapy

The adage “If you don’t laugh, you’ll cry” seems pretty applicable when you’re going through a tough time. I think that’s why I tend to lean toward humor whenever I’m faced with a challenge, and it’s typically worked well for me over the years. I realize at the moment I’m going through a double-challenging time. Postpartum can be chaotic and overwhelming, and coupling it with a cancer diagnosis and treatment is, quite frankly, a lot. Still, thinking of the “best medicine” of laughter, I can keep myself feeling relatively normal-ish.

There are some side effects that are sort of tough to tell if they’re from the chemo or from being postpartum. I swear it would be super helpful if there was a how-to guide on the market, like a So You’ve Been Diagnosed with Breast Cancer at the End of Pregnancy and Now You’re Dealing with Chemo after just Having Pushed a Watermelon-Sized Human Out of Your Body: For Dummies.

via GIPHY

It could answer so many questions! Usually my BFF when it comes to quick searches for kid issues and teacher prep materials, Google has been fairly inadequate in addressing issues about my particular cancer diagnosis. Note that I do know Google is certainly not the end-all research tool; I do teach college composition, after all. However, I also know from my work as a teacher that, tragically, most people won’t look much beyond the first page of a Google search result when conducting research, especially casual research to answer immediate questions.

If I find others in my same scenario and compile their insight, maybe I can create this guide. Until then, I’ve decided to go ahead and be my usual somewhat silly self here and share some of my ponderings from treatment during this unusual time. I’ll add where my searches have led me astray, and my own random conclusions:

When your hair is falling out, how can you tell whether it’s that postpartum hair loss or the Taxotere kicking in?

Google’s Search Results: Articles about postpartum hair loss, mainly, as well as a surprising story about a woman who went completely bald postpartum. Mayo’s site about chemo-related hair loss was thrown in, too. (And, of course, some links led to ads for exciting hair implants.)

My Unscientific Answer: If you can make a legit wig (or meal) for your Cabbage Patch Doll with the hair you pull out casually scratching your head, then it’s probably the chemo. If it’s some stray strands falling out with a brush or in the shower, then it’s postpartum. Maybe? I do remember being unhappily surprised with the amount of hair I lost after my second child. 


Scarf and shades = 1960's movie star vibes?

 When you’re dealing with haywire emotions, how can you tell if they’re from the chemo/cancer or from  postpartum hormones?

Google’s Search Results: Lots of links to postpartum depression screenings and women’s blog stories about PPD. Helpful certainly in some scenarios, but not what I need.

My Unscientific Answer: If you grew teary-eyed over that stinkin' adorable Pampers commercial and spent half the night cuddling your new munchkin, it's the "baby blues"; if emotions affect your ability to cope/parent, they may be linked to postpartum depression. If they seem tethered to an extreme annoyance/frustration with cancer, my money's on the chemo.

 Was that bizarre acne attack that I had the week after chemo caused by the chemo itself or a weird combination of postpartum hormones, stress, and the steroids I was given with chemo?

Google’s Search Results: A combination of posts from women dealing with postpartum acne and people who underwent chemo sharing their home remedies for acne. The phrase “natural ingredients” is tossed around quite a bit.

My Unscientific Answer: Jury’s still out on this one. I’m also not sure what fixed it-- the prescription one of the oncologists gave me or my own combination of products I gathered at Walgreens. What I do know is that my face cleaned up quickly but was dry as sandpaper last week-- and the frigid winter air is probably only partly to blame. I do long for spring, though.

Is that horrible neck and hip pain I had the weekend after chemo 100% related to that Neulasta shot that stimulates white blood cell growth in my bone marrow, or was the pain amplified due to the weird hip and spine issues I had during the last trimester of pregnancy? (And, if so, can I have that super helpful D.O. adjust me again?)

Google’s Search Results: Fairly helpful this time around, showing me a list of side effects from Neulasta, including people who experienced hip pain and neck stiffness to varying degrees.

My oncologist and nurses (ah-ha! A trusted resource!): You can go ahead and try an adjustment, but the bone pain will likely still continue to some degree. This seems to be due to the depth, location, and cause of the pain. 

My Unscientific Answer: I’m thinking this is related to the shot mainly, but I’m sure the way my hips and pelvis shifted during pregnancy didn’t help. Just before I was adjusted in December, the doctor showed me how one of my legs was actually two inches shorter than the other due to my pelvic bone’s movement during pregnancy. Intriguing! It certainly explained that gangsta preggo limp I'd developed.

While maybe not terribly credible, perhaps this can be a starting point for others in a similar situation (or simply a little lighthearted, free therapy). I’ll always value laughter and the strength it can lend. Although not directly connected, I’ve always seen a tie between the adage of the importance of laughter and Bible verses about how we humans aren’t of this world so we have to be greater than it. Even if we have a body that feels weak and awfully mortal at times, we also have a soul that can be much more durable than that. So laugh, don’t cry (well, sometimes-- tears are therapeutic, too), and be stronger than you think you can be.

Breast Cancer Warrior: Buying Chemo

There is a setting in my vehicle for driving in snow and ice. When I flip that switch, the SUV slows down.You can feel the wheels pulling more cautiously at the road, feeling tentatively for traction and taking the time to confirm that they've secured it. It feels more sluggish to drive in this setting. The car doesn't really want to move faster than 40MPH, and, to be honest, that's about as fast as I'd want to go on slick roads anyway. I felt that way during the first week after chemotherapy. It's like my body was moving more sluggishly, more tentatively through its environment. Hopefully, like with my vehicle's features, it was with a purpose-- my body calculating what it needed and working to gain the upper hand against cancer. There was now an official war waging inside my body between an intense drug cocktail and the existing tumor invasion, and a large part of my energy had to be shifted over to battle.

"What are the advantages of doing chemo?" I'd asked my oncologist the week before. "Can we just do surgery? Can't we just cut the tumor out and skip chemo?" It seemed simple in my non-medical mind: cut out the bad piece and things would go back to normal, right?

He explained the issues with trying to remove a large, growing tumor, and how we would need to reign in its growth before surgery. "That is where chemotherapy comes in. With an aggressive tumor, we need to do the chemo first to stop its spreading. There is also the possibility, if the tumor shrinks enough, that you would need a less invasive surgery."

Chemo scared me. Whenever I pictured "chemo patient" in my mind, I imagined a bald, frail, sickly person. I wanted to be strong and present for my kids, my husband, my friends, and my students. How could I attend to all my responsibilities if I wasn't at my best condition? It was tough to mentally wrap my mind around slowing myself down. I wanted to live at my normal pace. I don't like being still for long. I typically don't even like spending an entire day at home.

A lot of my fear about chemo was a fear of the unknown. I would have to face my fear, especially when the MRI confirmed the large size of the tumor: 6cm by 3.5cm by 6cm. It had grown quite a bit since the earlier estimate at the biopsy the month before, and I was starting to understand what my oncologist meant about it being "aggressive". We had to rage war against this thing, stat.

Another fear was of simply putting a bunch of drugs into my body. As I joked to my husband the day before chemo, "I eat a ton of veggies and I don't even drink soda. Are these weird chemicals going to send my body into shock?" The only "prescription" I'd been taking for the last few years was a prenatal vitamin, for Pete's sake. Now I was just supposed to pour a bunch of hardy drugs straight into my veins? Wouldn't my system be overwhelmed? Would it go into some kind of lock-down? Would it send out the missile defense? Was there a secret self-destruct button some understated organ like my liver or kidneys would push when they tasted Taxotere?

I realized that I had to shove my worries aside. We can let our fears get the best of us, but that only leads to other negative emotions. I could instead focus on the positive. Bringing something fun to do, trying to get a laugh out of my oncology nurses, and joking with my ever-entertaining husband would make chemo a less frightening environment. I took a few deep breaths and felt at peace that, even though I was walking through a tough time now, everything would work out eventually. Family and friends were praying for me, I was praying for strength myself, and I had a team of physicians who listened to me diligently and answered all my questions. Between God and the medical staff, I felt like I had a pretty powerful team on my side in this cancer battle, which encouraged me and minimized my dreaded fear. I was ready to go to war packing that hardy and brutal ammunition known as chemotherapy.

Words & Coffee: Breast Cancer Warrior

I will be forever grateful to the doctors at Mayo because, although they frequently noted, “You’re too young; this is almost certainly not cancer” and “It would be very unusual for it to be cancer when you’re young and pregnant”, etc., they still took the time to send me from primary physician to ultrasound to biopsy when I found a lump during the 3^rd trimester of my pregnancy. They were thorough when they could have easily disregarded it as just another odd pregnancy symptom.  

Though 1 in 8 women will develop breast cancer, the risk of it developing in your thirties is just .4%* and its even more rare to be diagnosed during pregnancy.** I am used to being a bit of a unicorn in some ways, but usually it’s something more pleasant, like having all sons after having only sisters, or being both ginger and blue-eyed (interestingly, we make up just .17% of the population***). Being a rarity in the cancer world seemed somehow more frightening, especially at first. I didn’t know how to react when I first received the phone call from the doctor:

“The tumor tested positive for breast cancer.”

I think I was in shock. “Whoooo.” It was more the rush of air from my lungs than any audible word. 

“How are you doing?”

In my little Midwest Nice voice, I managed, “Good” because that’s what I always said.

I almost heard a smile in his voice. “I’m sure you’re not, but that’s okay. You may feel a lot of different things in the days to come, and all of that is normal. Do you want to ask any questions at this time, or would you rather I tell you a little more about what we’ve found?”

I let him tell me a bit more because my voice had disappeared. He cautioned that he didn’t want to overwhelm me and that there would be a nurse calling to set up an appointment with an oncologist soon. The oncologist would be able to answer my questions and get me started on a treatment path. When I hung up, all I could do was sink to the floor and call, “Eli, help!” As always, my husband came running over.

It was a terrifying paradox to imagine both life and death being created inside me at the same time. I couldn’t help but imagine the cancer as black sludge slinking through my tissue. Pictures that I’d seen of oil spills in the ocean crossed my mind. Here I was minding my own business, judging myself to be a fairly healthy person (and heck, I was growing a tiny human again; wasn’t my body supposed to be strong?), when a dangerous force that I couldn’t control slipped in. This lack of control was also frightening-- not that I’m a control freak, but the idea that I could make good lifestyle choices and still have something like this happen at age 32 threw me off. Although friends and doctors cautioned me against this line of thought, I still couldn’t help but wonder, “What did I do wrong?” I forced myself to a more positive line of thinking, taking each day one step at a time. This has been helpful, but cancer is an emotional rollercoaster, and some days are better than others. 

The oncologist insisted on induction and forbid me from breastfeeding-- two things that alone were tough to deal with and combined felt disheartening, but I knew it was for my own safety and the baby's. He also answered all of my questions, explained treatment options clearly, and confidently told me that I’d get through this. “You’re stubborn,” he said. “My stubborn patients do well.”

After Corey was born, there was a whirlwind week of testing to determine how far the cancer had spread. This was the most difficult time because I’d been warned of how aggressive the tumor was, and any time I dared to research online, I was greeted with the heartbreaking statistics that younger women most often were diagnosed with the worst and most advanced breast cancers and had the least promising prognoses. Did we catch it soon enough? Any slight headache or pain had me panicking. I took deep breaths and focused on my two kiddos and new baby. Family and friends were praying and sending me positive thoughts daily, all of which helped to keep me centered. Finally, we got probably the best news we could get in this situation: the cancer was localized to the left breast and hadn’t spread beyond one axillary lymph node.

Corey and me, strong together.

“It’s curable,” my oncologist said. “Yes, you will go through the treatment, and chemotherapy, surgery, radiation-- none of that will be easy, but you will finish it and go on with your life.”

It’s true. It won’t be an easy process. As I look ahead to months of aggressive chemotherapy to shrink an aggressive cancer, I can’t help but feel nervous and wish I wasn’t in these shoes. Still, I keep my mind tuned to what one of my nurses said after Corey’s delivery: 80% of how you feel is your mind set. In a way, this process may be like labor: each time, I relied on my own focus and breathing to reduce the pain, and, each time, I made it through just fine. I figure I can do other tough things, too. I will get through this, and I will hopefully be stronger for it.                                        

*Cafasso, Jacquelyn. “Everything you should know about breast cancer in your 20’s and 30’s.”

Healthline, 17 Sept. 2019, https://www.healthline.com/health/breast-cancer/breast-cancer-

20s-30s#prevalence-and-incidence

**Keyser, Erin, et. al. “Pregnancy-Associated Breast Cancer.” Reviews in Obstetrics and Gynecology,

            vol. 5, no. 2, 2012, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3410508/.

***Smith, Sam Benson. “This is the rarest hair and eye color combination in humans.” Reader’s 

            Digest, https://www.rd.com/beauty/hair-eye-color-combination-rare/