"It's funny, how that happens sometimes, isn't it? How beautiful things in life can turn out to be horrible? Like the little dark spot that had appeared on the ultrasound screen this afternoon. The cute little bugger had looked like a river rock. You know, the kind of smooth, dark stones that people skip across the surface of a pond? The ones that conjure up images of picnics, dates, and orange sunsets that paint the whole sky with streaks of pinks and purples? The kinds of sunsets that make you realize that God is an artist? That's what it looked like. A river rock. A lump of cancer really had no business looking that beautiful, I decided. It was inexplicable. It was unnatural. That was just not the way things were meant to be."
- Alexis Aulepp (an excerpt of Orange, a musing/poem typed in the iPhone Notes app, approx. February 2015)
MORTALITY AND HEALTH
Photo courtesy of Alexis & the Aulepp family. Taken August 2019, approximately three hours after surgery was scheduled to start and 10 minutes before Alexis (21) was finally taken back for surgery
Many people carry hidden wounds.
It might be a scar buried under folds of fabric. A grimace after an unexpected movement. An encouragement to "go on, I'll catch up" when someonese says they "just need to take a quick rest."
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Or it might be a lump you didn’t know you had. A lump that starts to cause you pain. An under-the-skin lump in a place where lumps really shouldn’t be.
The first time I found one, I was sixteen.
Mayo Clinic Staff. “Fibroadenoma – Symptoms & causes.” Mayo Clinic, www.mayoclinic.org/diseases-conditions/fibroadenoma/symptoms-causes/syc-20352752. Accessed 22 Apr. 2020.
They’re called fibroadenomas. Fy-broe-ad-uh-NO-muhz. The word felt uncomfortable in my mouth, but not as uncomfortable as the word cancer. The radiologist told me not to be too worried – moving the wand over my breast again – that this dark spot on the ultrasound screen was probably just a fibroadenoma – though her eyes stayed trained on the shifting image – but the staggering size of mine meant she couldn’t rule out something more sinister.
I was sure it was cancer.
The ultrasound technician had had a similar reaction. Despite my obvious nervousness, she had kept up a steady stream of friendly banter, ushering me into a dimly lit room and getting me into position without batting much of an eye at the tight way my mouth twitched open every time she said something that required a response.
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The friendly banter only quieted once the imaging began. She had persisted while she prodded and poked me, marked the skin above
by Alexis Aulepp
the lump with a Sharpie, and squeezed warm gel over the X she had made, but she lapsed into silence as the first images began to appear on the screen, positioned just out of sight in the periphery of my vision.
The machinery beeped as she took a screenshot.
She moved the wand. Clicked. Moved the wand again. Click.
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Beep.
Now that she wasn’t talking, I could hear the clock ticking above the sink in the corner. I could hear the radio on the counter playing soft country music. She asked me a few tentative questions about when I had first noticed this lump, and I tried not to be bothered by the slight tremor in my voice.
When she was done, she left – a little too cheerfully – to run these images by the radiologist.
I was alone in the small room.
by Alexis Aulepp
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On the ride home from the hospital, I stared out the passenger-side window.
I didn’t want to talk to my mom, and I don’t think she tried to talk to me. At some point, they had invited her back to go over the details, too, and we both knew what the next steps were.
There was no point discussing it further.
It had been a year of questions leading up to this moment, and now it would be another week or two until an appointment with a surgeon, and
by Alexis Aulepp
then three more months until surgery to remove the monstrous mass.
It was February 2015 then. I wouldn’t get my lab result answers until a few days after my surgery in late May.
I had three months of waiting and worrying ahead, and I couldn’t escape the nagging suspicion that this thing inside me – this firm but rubbery egg-shaped mass under my skin – was cancer.
And if it is…???
As much as I didn’t want to think about the possibility that I could die, I did anyway.
Sixteen seemed too young.
by Alexis Aulepp
The time passed in what is now a blur. I don’t recall the extent of the darkness and pain and fear that I’m sure transpired in those months of waiting, but I do recall the overwhelming few days surrounding the surgery.
I remember the anticipation. The nerves. I remember the Friday in late May when an almost-perfect-attendance high school junior skipped more than half of her classes to go to the hospital, change into a hospital gown, and lay there with an IV in her arm until surgery would begin about three hours later.
I remember them beginning to wheel me back to the operating room. I remember the anesthesiologist asking me to count down from 10. I remember the look of alarm on his face when I made it to 7 – followed by a quick adjustment with my IV – and then making it to 4 before he got me completely out.
I remember waking up in the operating room.
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The big, bulbous lights were still on and trained on me – bright compared to the relative shadows in the rest of the room – but everything felt murky and oddly timed. Figures in blue scrubs buzzed in and out of my line of sight, presumably cleaning up, but it was as if my brain was only getting the signal at five frames per second, not twelve.
I was too tired and groggy to move, so I just closed my eyes and laid there – motionless and unable to speak. I had only one relevant thought:
It was done.
by Alexis Aulepp
Whether cancer or not, I knew that the lump would have been removed by this point, if I was awake, so I allowed myself to relax. I could worry about test results later.
The following days were an uncomfortable blur. Besides the baseline pain of recovering from having your body cut open, I had to grapple with how to move and sleep in ways that wouldn’t further aggravate the injury.
But I managed. Within a few days, I was almost back to normal.
This was only helped by the phone call announcing my lab results. Just a few days after surgery, the assessment had been made: the removed tumor was negative.
It was not cancer.
It was – quite likely – just a fibroadenoma. Or at least some other benign form of tumor.
The news came as a bit of a shock.
I would live.
by Alexis Aulepp
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It almost seemed fake. Too good to be true. Me? Noncancerous? But I had been so sure!
The relief outweighed any doubts.
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I would live. Whether divine intervention or a case of unnecessary paranoia (or both), the important part was that I would be okay. It was great news. The best news! Now, all I had to do was heal.
When I visited my surgeon a few weeks later to remove the stitches and check-up on the healing process, she shook my hand and told me she hoped to never see me again.
Little did I know, this would not be the end of this story.
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by Alexis Aulepp
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A few years later, I found another lump.
It was the Thanksgiving weekend of my sophomore year of college. I was 19-years-old.
After realizing I hadn’t done a breast self-exam in a few months, I started one – almost with a shrug – and was surprised by the firm, slightly springy lump my fingers encountered. This time, it was in the opposite breast from the first.
Time began to do weird things.
I found my mom, asked her to come into the bathroom with me, and showed her what I found. She agreed, grimly, that we should make the appropriate appointments in order to get an ultrasound.
Following the ultrasound and other appointments, surgery was scheduled for late April 2018.
When that time finally arrived, I would move home from college for the summer and check-in to the hospital for surgery in the same twelve-hour span.
A few days later, I would enter my twenties with a brand-new scar.
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by Alexis Aulepp
The surgery went well, and recovery seemed easier this time, but there were a few unexpected twists. After surgery, my surgeon reported having removed not one, but three tumors: a larger fibroadenoma (still larger than average, but a lot smaller than the one from 2015), plus two much smaller ones that had been “hiding” behind the first.
With the good news that all of these tumors were benign came a new concern: I had now had four fibroadenomas removed from my body, and I still had at least fifteen years of potential production ahead of me.
by Alexis Aulepp
No one knows what causes fibroadenomas, and no one can tell me why mine tend to grow big and fast. My surgeon could only chuckle ruefully and tell me I’m what they call a “fibroadenoma producer.”
I didn’t appreciate my new moniker, but it was something worth thinking about. Fibroadenomas, as my surgeon reminds me every time I see her, do not have to be removed. Many women get them, and some women simply live with them, but that usually only works if they stay small. The bigger they get, the more problems they can cause, and so the fact that mine tend to grow to large
Mayo Clinic Staff. “Fibroadenoma – Symptoms & causes.” Mayo Clinic, www.mayoclinic.org/diseases-conditions/fibroadenoma/symptoms-causes/syc-20352752. Accessed 22 Apr. 2020.
sizes means that, so far, it has always been recommended that they be removed.
To my deep disappointment, I found two more in the summer of 2019.
It was the summer between my junior and senior year of college. I was floored. My second fibroadenoma-related surgery had been just over a year ago, and now I was anticipating surgery number three – this time, for two different spots.
The order of appointments I made and attended felt like a routine I’d gotten used to. It wasn’t a great feeling. But perhaps the familiarity led to some sort of expediency, because at my meeting with my surgeon in late July, she gave me a choice: surgery in August, or surgery in October.
I said see you in two weeks.
By mid-August, I had two more scars.
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Unlike with the first scar, the sight of them no longer made me cringe. I knew my body, and I had accepted what it had been through. I was frustrated – not at the marks themselves, but at the fact that there were so many of them, especially so early on in life.
I decided I couldn’t keep doing this. The fibroadenomas were consistently growing to sizes that recommended removal, and not only were these surgeries expensive, but the physical toll was taxing, too – especially because I remembered reading something that said my kind of fibroadenoma could increase the risk of breast cancer later in life.
With all of this in mind, I decided that something more drastic needed to be done. I considered the idea that after five surgeries, perhaps, I would have to call it quits and remove the location of the issue altogether.
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by Alexis Aulepp
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My mom thought I was being too extreme.
I did, too, but I was at a loss.
It seemed preposterous to keep having these surgeries every few years, but I knew I couldn't stop or control the growth of these fibroadenomas – they just happened – so there was the possibility that they would continue to happen until I took drastic action.
I told myself I’d have to hope for the best.
But everything was about to get worse.
In November 2019, I found two more.
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Almost immediately, I felt the fight go out of me.
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They had just done surgery in August (August!), and here I was in November, probing two more firm, pliable lumps. As if to add insult to injury, one of them was in the same breast (but a different spot) than both of the two that had been removed in August.
by Alexis Aulepp
by Alexis Aulepp
Now, I was at even more of a loss. If these were, in fact, what I thought they were, this would eventually mean surgery number four – likely before the age of 23.
My personally set limit of five became sobering.
by Alexis Aulepp
I stared at the ceiling tiles above my head.
I considered counting the tiny spots on each one, but then thought against it.
I stared at the radio, reflecting that I didn’t much enjoy this country music.
I stared at the dim spotlight in the ceiling that was providing the only light in this shadowy room.
I cried.
I prayed.
I tried not to think about death.
I told myself nothing was certain. That nothing had been said that should alarm me. That I was young and relatively healthy and it was all going to be okay – even if I was right by assuming the worst.
But I knew this wasn’t true. I knew that cancer spreads quickly, and I knew that I had let this go on far longer than I should have.
But it wasn’t my fault.
I thought about the doctors – all the doctors – I had seen before I finally found myself in this ultrasound room. I thought about how the seriousness of my complaints about a lump had been routinely underplayed – possibly for a year or more – until it had started to cause me daily pain.
Only then had I gotten the proper referral to this ultrasound, and only then had they properly begun to diagnose me.
Fibroadenoma, the radiologist said. But by the time she had returned with the technician – over a half-an-hour later – I had convinced myself it could be nothing but bad news.
She rattled off statistics. Something about lots of young women getting them – but usually not quite as young as me. Something else about it being common for them to be a certain size – but definitely not as big as mine. She rattled off some more numbers, and I tried not to sob.
Mine was more than double – perhaps even triple – the size of the “typical” fibradenoma.
I was sure it was cancer.
And if it was cancer…
I didn’t want to go there.
She told me not to get too worried. No one could know what it was without either a biopsy or an excision, but it was unlikely – based on my age – that this was cancer. Of course – she added – she couldn’t rule out cancer without the biopsy/excision…but really, it’s unlikely, so don’t worry.
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And it remains sobering.
But an odd thing is happening. Perhaps because of everything else going on in life in 2020, I have found that my possible surgery situation is weighing less on my mind than I expected.
It is true that another surgery (and possibly even more surgeries over the course of my life) are not desirable to me, but it is also true that I am not the same fearful, crying girl I was in 2015.
In 2015, I was afraid my fibroadenomas were cancer. I was afraid of dying, and I was afraid of having my life cut short by death. I was afraid of what I saw as a possible impending battle with cancer – and all the body changes and difficulty that would come with that battle – and I was prematurely mourning all that that battle could rob me of, even if I survived.
In 2015, I was reflecting on the driver’s license I had just gotten. I was thinking of all the years of high school and college I had ahead of me. I was shaking my hair loose from its trademark ponytail and considering the fact that I’d never appreciated it enough, and now it might soon be gone.
In 2015, as I prayed for healing and comfort, I hoped that God would give me more time on this Earth. And He did. He has, and continues to. And a lot has changed.
Now, in 2020, do I want to die? No. But am I afraid of death? That has become more complicated.
I don’t think I’m afraid of being dead – especially because of my Christian faith – but I do not particularly look forward to the process of dying. I think, in this earthly life, I still have the ability to presume sadness on what might have been a longer life well-lived (if I were to die before old age), but I also think that it will not matter to me once I am dead. In fact, because of my faith, I think at that point I will wish I had died sooner.
As a result, the question of removing my breasts at some point in my life has transformed. With diminished concerns and fears about health and mortality, space has been made available to grapple with questions of identity and womanhood.
For example, what would life look like as a woman without breasts? What would shopping look like? How might my wardrobe transform? Or might it stay the same?
Would I try to “compensate” in some way for my potentially perceived lack of bodily femininity? How might my views on femininity and womanhood change? How might they stay the same?
Would a lack of breasts cause any sort of confusion in others about my sex or gender (especially with my already-deeper-than-average voice and somewhat androgynous wardrobe/features)? If so, would I be bothered by that? And, if so, how much?
What, specifically, might my friends, family, or a future partner think? Is this decision one that is more complicated or wider-reaching than I might first have thought? Could a lack of breasts – in some twisted way – make me perceive myself as less worthy of romantic love?
Would I experience a sense of loss? A changed sense of self? Would I simply experience a different self? Would I still feel like me? And, if I didn’t, who/what would I feel like?
Would I grow to resent my “new” body? Appreciate it? Be indifferent? How long would it take before I wouldn’t be surprised by the sight of myself in a mirror?
Would I ever regret my decision?
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I have so many questions.
Hopefully, I won’t ever have to find out the answers. But lots of women do.
What I thought at first was breast cancer turned out to be something less scary, and I am thankful for that, but I imagine the emotional journey bears some resemblance to that of all women who find lumps in their breasts – whether they turn out to be benign or not.
For both these women and myself, I don’t know what the future holds. I don’t know if or when my condition will become more serious, and I don’t know if or how this story might end happily. I only know that this potential dry-run, as painful as it was and continues to be, has changed me.
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by Alexis Aulepp
Somewhere between 2015 and 2020, my hidden wounds became battle scars, not disfigurements. I developed a stronger resilience, endurance, and tenacity. I wrestled with questions of identity and future outlook on life, and I found some semblance of peace with what might someday be a dramatic change in my body and sense of self.
I realized I’m now better prepared to face my future – no matter what it holds – because of my past, and I began to understand that it’s possible to wish things had been different without lapsing into self-pity.
So, no, I don’t know what the future holds. And I don’t pretend to have authority on how someone should feel about changes in their body. But if my non-battle-with-breast-cancer has reminded me of anything, it’s that health and mortality are fickle creatures. We can’t always predict how or when we might face death – and we can’t always predict how or if we’ll come out of that encounter alive – but we can live our life to the fullest now, and we can take every second chance we get, one day at a time.
At least in my case, that’s been more than sixteen-year-old me was expecting.
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by Alexis Aulepp
by Alexis Aulepp
