Cancerversaries, Scanxiety and Other Made-up Words that Rule a Cancer Survivor’s Life

I never thought I’d reach this point. In 2016, when I reeled from the gut punch of my breast cancer diagnosis, when my trust in my body was lost, when I worried I might not live to see my son grow up, I simply could not imagine being five years post-diagnosis.

Five years is a big deal for breast cancer patients. Most cancers recur within the first five years after diagnosis, so to make it to that milestone means your likelihood of recurrence goes down. You can relax a little, quit worrying so much. Or so I thought.

When my five-year cancerversary rolled around in July, I felt mixed emotions. Certainly thankful, joyful even, but also nervous. Could it actually be possible that this nightmare was behind me? Wasn’t there another shoe out there, just waiting to drop?

Particularly as a carrier of the BRCA2 gene mutation, I feel like cancer is my fate, and there’s no way I could’ve gotten off this easily.

A couple of weeks after my cancerversary, I had my annual appointment with my oncologist. He went on and on about how great my blood work looked, how well I was doing, how delighted he was to see me so healthy. But he also wanted me to look into starting a pancreatic cancer screening program.

Pancreatic cancer is one of the types associated with BRCA gene mutations. My maternal grandmother and great-grandfather (her dad) both had pancreatic cancer that metastasized to their livers, ultimately killing them. With that one-two punch of risk factors, I was actually happy to start a screening program. I know how insidious pancreatic cancer can be, and I also know it doesn’t discriminate by age–I think Chadwick Bozeman taught us all that tragic lesson.

So last week, I reported to a gastroenterologist who specializes in pancreatic and liver screenings. As he perused my chart, noting my medical history and my family’s history, I suddenly felt nervous. How many red flags waved before him?

After reviewing my records, he explained the possible screening program–every six months, I would have blood work done and either an abdominal MRI or an endoscopy scan of my pancreas to look for small abnormalities. With this kind of rigorous screening, any little change could be discovered, meaning if cancer develops, they’d likely catch it early.

Early detection for pancreatic cancer is critical, yet it rarely happens. Generally, by the time a person exhibits symptoms, the disease has progressed beyond the point of successful treatment. Pancreatic cancer has a tendency to spread to nearby organs, particularly the liver, making it even more dangerous.

As I contemplated the monetary expense of the screening he proposed, not to mention the time investment and the invasive and unpleasant nature of the scanning methods, I knew I should have felt apprehensive. But I didn’t. When he asked me what I thought, I told him that my greatest fear is dying before my son grows up. So if there’s anything I can do to prevent that from happening, no matter how unpleasant or expensive, I want to do it.

With that decision, the doctor set up my first MRI, which I had this morning. With a handful of MRIs under my belt, I felt like an old pro as I entered the radiology department. I removed all the metal from my body, donned a gown and climbed up onto the rolling bed that slid me inside the hulking machine. My eyes squeezed shut, I lay stock still, only moving to breathe, as the otherworldly cacophony of sounds dinged and rattled around me.

As I lay there, I wondered what it was seeing. What the contrast dye coursing through my veins would reveal.

After about a half-hour, it was over. I went to Lowe’s afterward to pick up a few things, and noticed my phone ringing as I walked into the store–my doctor’s office. I answered, and the woman on the other line said they’d received my scan results, but that the doctor was at the hospital today and wouldn’t be able to talk to me about the notes and next steps. Instantly, I felt as though the floor dropped out from under me. Notes?! Next steps?!

I composed myself long enough to pay for my items and leave the store, moving through the breathtakingly beautiful morning in a daze. My mind raced: chemo, surgery, radiation, death.

For most of the day, I spiraled, consulting Dr. Google and crying over the incredibly bleak survival rates of pancreatic cancer. How could this be happening again?

Suddenly my phone buzzed–an email from MyChart. My heart beating out of control, I logged in and saw my results were uploaded. I clicked the link and read the long list of findings. Pancreas, liver, gallbladder, spleen, stomach–they all looked normal. I felt like I’d just won the lottery.

But the report wasn’t totally good. The scan revealed some “nonspecific nodules” on the lower portion of my lungs. Of course, that freaked me out, too, but after some Googling, I found that lung nodules are fairly common and usually benign. I’ll have a CT scan to confirm (yay, more scanxiety!), but for right now, I’m holding onto that and trying to remain hopeful.

Today has been a reminder of the reality of life after cancer. Most days, I’m fine and not constantly freaking out over every little ache and pain like I did in the first year or so after completing treatment. Sometimes I even forget about cancer and feel like a normal person. But the fear is still there. And when it rears its ugly head, it still shocks me with its intensity.

How I Learned to Adjust to Post-cancer Life

That’s the title of an essay I recently wrote for Healthline. It’s one of many pieces I’ve written lately for media outlets exploring issues related to breast cancer. Since I was laid off from my full-time job in April of last year (thanks, COVID), I’ve been writing a lot more about cancer. In one way, this kind of writing is easy because I know this topic so well. But it’s also hard. Rehashing old memories and telling stories similar to my own can be very triggering. While I have my anxiety under control, for the most part, there are certainly days that it comes roaring back to scare the hell out of me like it once did on a daily basis.

All that said, I’d like to share a few of the pieces I’ve written lately that I think might be helpful for others either in active treatment or finding their way in post-cancer life. Thanks for reading!

Healthline: 6 Overlooked Symptoms of Breast Cancer
Healthline: Parenting through Illness Prepared me for Parenting in a Pandemic
Breastcancer.org: Managing Breast Cancer, COVID-19 and the Winter Blues
Breastcancer.org: How to Fight ‘Caution Fatigue’ and Stay Vigilant about COVID Safety
Breastcancer.org: How to Stay Active During Quarantine
Mission Health Blog: The Importance of Mammograms: One Woman’s Story

Forget Pink Ribbons—This is How You Mark Breast Cancer Awareness Month

Pinktober is here again.

Breast Cancer Awareness Month, or Pinktober, is here again. Amid the skeletons and jack-o-lanterns, pink ribbons and cutesy slogans are here to remind you that a disease that kills roughly 40,000 per year exists. You know, in case you were unaware.

While it’s cool people and companies are also taking this time to raise funds alongside that oh-so-important awareness, I think there’s more we can do.

For instance, we’re all aware this disease exists. But did you know it presents in a number of ways that don’t include lumps? Ways that sometimes don’t show up on mammograms? Scary but true. I recently wrote a piece for Healthline on this very thing. Did you know skin dimpling can indicate breast cancer? You can learn more about the signs in my piece, as well as at Know Your Lemons (a fab resource).

Here’s another thing you probably didn’t know: Metastatic breast cancer is the only kind of breast cancer that kills. Meaning, once cancer metasticizes (spreads), it can and often will kill. Here’s the even scarier part: Even early stage cancers that are successfully treated can metasticize. There goes the assurance that catching it early automatically means you’ll be fine.

This is the fear every breast cancer patient and survivor lives with. Will it come back? Will it spread? Will I die?

Which brings me to my second point in how to truly make the most of Pinktober: Donate to Metavivor. Stage IV or metastatic breast cancer is the least-funded type of breast cancer research, even though it’s the only type that kills. Metavivor is the only organization dedicated to metastatic breast cancer research, as well as supporting MBC patients. And all donated funds go to that mission—you never have to worry about shady dealings filtering your support. I donate to Metavivor every year, and I encourage you to, as well. Every penny counts.

Last but not least, be gentle with the breast cancer survivors in your life this month. Pinktober is incredibly triggering for us, and throwing a pandemic on top of it doesn’t help. Just remember the fear of illness you’ve lived with these past few months has been our reality for a while, and while a vaccine will one day stop COVID, there’s no silver bullet to kill our boogeyman.

Did Chemo Ruin My Immune System?

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There was a time when I was a really healthy person. I maybe caught a cold once a year, or occasionally had the sniffles. I hardly ever felt the need to go to the doctor–over-the-counter meds always did the trick.

Then I was diagnosed with cancer. And I went through several rounds of intense chemotherapy. And while that chemo decimated my cancer, it also all but wiped out my immune system. Even though I dutifully got my Neulasta shots after each infusion in an attempt to keep my white blood cell counts up, they almost always plummeted. And after the first dose of Taxol made me incredibly sick and wiped out my white blood cells for almost a month, my doctors knew I couldn’t continue with chemo without inflicting irreparable damage to my immune system and bone marrow.

Since that time, I swear my body has changed. And I’m not just talking about my chemo curls or brittle nails, I’m talking about my ability to resist and fight disease. I don’t have any concrete scientific proof of this claim, but I’m making it anyway: I’m pretty sure chemo ruined my immunity.

I catch everything nowadays. And I have a harder time getting rid of illnesses. Almost every cold turns into a sinus infection. And even more curious, my eczema is pretty much gone.

For those lucky souls who’ve never dealt with this irritating skin condition, eczema is an itchy rash often caused by an over-active immune system. I began suffering from the condition in middle school and have contended with it my entire life. That is, until I received chemo. Since then, I’ve had only one teeny-tiny flare up of eczema. While I enjoy the clear, itch-free skin, I also can’t help wondering what’s going on inside my body to keep it that way.

But my lack of eczema is not the issue here; it’s getting sick more often than I’d like. Sure, some of that can be attributed to being the parent of a preschooler, but I can’t help thinking it’s more than that. For example, within the last month, I’ve had a cold that morphed into a nasty sinus infection, strep throat and now hand, foot and mouth disease (which is a really shitty thing to catch, BTW). I feel like I’ve only been well a handful of days this past month.

Do I have any rock-solid medical proof that this is all due to chemotherapy? No. Do I regret undergoing chemotherapy to treat my cancer? Hell no. It saved my life. But I still can’t help wondering if my sub-par immune system is yet another piece of collateral damage in the war to save my life.

Checking In

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I had my now annual (down from weekly, monthly, every few months) check-in with my oncologist a few weeks ago. This is an appointment that always makes me nervous.

The visit basically entails getting blood work done and then talking with my oncologist about the lab results and how I’m feeling. He also does a physical exam to make sure there’s nothing weird going on with my chest or lymph nodes.

First, the really good news: I’m fine. My doctor said my labs were perfect, and in his words, I “couldn’t be doing better.”

I don’t know that that’s exactly true.

Returning to the cancer center is always a weird experience for me. I spent so much time there during treatment and in the year after. For a time, it felt comfortable, welcoming. It was one of the few places I felt like I fit in with my bald head or weird chemo curls. I knew how shitty all those people sitting in the chairs in the lobby felt–both physically and emotionally. There was this odd sense of belonging.

Now, that is gone. When I walked in there this week, I felt like an outsider with my long hair and summer-tanned skin. I looked more like a caretaker than a patient, and physically, I felt that way, too. I could certainly still empathize with those struggling through chemo and radiation, but my feelings aren’t so raw and at the surface. And instead of feeling comforted, I couldn’t wait to get out of there.

I realize this is a good thing. This is me re-entering the regular world, finding some sense of my “normal” life. Moving on. Living.

But at the same time, it troubles me. When you go through something so epically traumatic as a cancer diagnosis and months of intense treatment, it leaves you feeling so off-kilter. I know I’ve talked about this a lot, but that’s because it’s important and ongoing–moving on with the rest of your life is really hard.

Going back to the cancer center is really triggering for me now. I can almost conjure the sick feeling of chemo when I’m there. Seeing the people there for treatment–with their tote bags and pillows–I get antsy. I know what they’re in for. I know what the next days and weeks hold for them.

While I was in treatment, I always thought I’d love to come back and volunteer at the cancer center. So many survivors do, and it’s really amazing to see them there when you’re going through it–they made it, and so can you, is the message they send. But I’m starting to think I will never be able to do that. I can’t imagine being back in that infusion room again–the thought of it makes my palms sweat. As much as I’d love to help others, I don’t think that’s the way for me.

Instead, I’m turning to my writing. If you read this blog with any regularity, you know I’ve been writing more about my experience for numerous publications. I’m working on a memoir, too, focusing on how hard it is to get on with your life after going through something like this. Hopefully one day I’ll actually finish it!

Until then, I’ll be here, sharing these thoughts and reminding anyone who is in a similar boat that these feelings are normal, and it’s OK to still struggle. I do, and I want to talk about it so others can feel less alone in this process.

 

Three Years

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This morning I logged onto Facebook and saw a post by a friend, celebrating her mother’s triumph over cancer after being diagnosed 12 years ago today. And then it hit me–today’s my cancerversary, too.

The past two years, this day has filled me with a mixture of dread and gratitude. On July 11 the past two years, I’ve relived those awful moments of that day, recalling the overwhelming fear and grief I felt at hearing those words: “You have cancer.”

At the same time, with each year that passes, I feel so grateful to still be here. And I get excited to think of how much closer each year brings me to that magical five-year mark when my risk of recurrence decreases (although, that’s no guarantee it won’t ever come back).

But this morning, cancer was not the first thing on my mind when I woke up. And as I went through the routine of preparing for work and getting my son off to camp, I still didn’t think about it. During my drive to the office, I listened to a podcast and got lost in the story–cancer was nowhere in my thoughts. Until that moment I logged onto Facebook, I actually didn’t think about what today is and what it means to me. For a while, I forgot.

This is huge! And it’s something that even two years ago I’d never believed possible. I remember after I got the all-clear after treatment, my oncologist told me there would come a time that I don’t think about cancer every day. I had such a hard time believing him because at that moment, the disease was at the forefront of my mind all the time. I couldn’t stop thinking and worrying about it. And while I’m still not quite to the not thinking about it stage yet, I’ve made so much progress.

So this is all to say, if anyone out there reading this is still early on in their journey with this disease, I want you to know it gets better. It never stops being scary or sad or frustrating, but those feelings lessen. And you learn coping mechanisms to deal with them. And eventually your hair grows back and your appointments taper off and you start to feel more like yourself again. It’s a process, and as you go through it, the key is to be gentle with yourself and do what you need to find peace. I never believed it myself, but I can tell you now, it will come.

Summertime Blues

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I’m having trouble sleeping. For the past week or so, I toss and turn in bed, trying in vain to settle so that sleep will come. I take lavender baths, I read, I have a soothing ocean sounds white noise channel playing, but none of it seems to help. I usually end up getting up to take a pill to help me rest.

This is not a normal problem for me. I usually have little trouble falling asleep. Sometimes I even conk out before I’d planned while snuggling with my son in his bed after storytime.

Part of my problem is this is the week before we go on our annual family vacation to the beach, so my mind is racing, thinking of all the things I need to take care of at home and work before being gone for a week. But even as I check off items on that long to-do list, my restlessness remains.

Then yesterday, this photo popped up in my Facebook memories from three years ago:

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My husband and me, sitting on the porch swing at the beach. We were peaceful, relaxed, and on the cusp of a complete shitshow. I didn’t know it at the time, but sitting right there, my body was betraying me. Cancer was growing in my breast, forming a lump that I’d notice just days after this image was captured.

I look forward to summer every year, basking in the warm days and beach trips and pool parties. But there’s also a part of me that dreads it now. Not because of the heat (although, talk to me in August, and I’m sure I’ll have changed my tune), but because of the memories this time of year dredges up. Everything about this season conjures a frightening past–the thick heat, holidays we celebrate, the travel I make for work. It all takes me back to that terrifying time of finding a lump and being diagnosed with cancer. It transports me to those grueling months of slogging through my life, bald, tired and perpetually nauseous from the chemo.

When I saw the photo, I suddenly understood this feeling of angst that seems to be following me right now. My restlessness surely in part comes from that underlying sense of paranoia that I doubt I’ll ever fully shake. There are so many little triggers this time of year, so many subtle reminders like how the light looks in the afternoon and how it feels to walk through a stifling day, that take me back to that place I’ve fought so hard to forget.

In my meditation exercises, one technique is to acknowledge worrisome thoughts, and then push them along their merry way to focus on the moment at hand. I’m doing a lot of that right now, and it’s something I’ll do even more next week while vacationing with my family. I refuse to let this disease steal one more moment of happiness from me.

Life Goes On

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Hey, long time, no see!

I remember when I was first diagnosed, I found this really great blog written by a young woman who’d also navigated a breast cancer diagnosis and treatment. I devoured her posts, grateful to read the words of someone who’d already walked the path I was about to take.

But then, her posts stopped. Not because of something bad, but rather, because she was doing well. She was living life and moving on.

That’s kind of where I am right now. I’m two years and eight months removed from my diagnosis. I’m almost two-and-a-half years removed from chemo, and it has been more than a year-and-a-half since my last surgery. Not a huge amount of time, but enough to feel some distance.

My hair is getting long–it hangs just past my shoulders when I straighten it. And it’s getting less curly and easier to manage. In fact, when I got it colored recently, my stylist remarked, “It feels like your hair again. It didn’t feel like your old hair when it first came in, but it does now.” She’s right. It’s softer and less coarse. When I look at myself in the mirror now, I don’t see such a stranger looking back. That has done wonders for my self-confidence. Truth be told, while I was grateful to have hair again, I hated it so much when it was short and super-curly. I felt ugly and unlike myself–it was yet another indignity to suffer after what seemed like an endless stream of indignities during treatment and surgery.

My anxiety is a lot better, too. That first year–whew, that was rough. I feel like I was living in a near-constant state of panic. I certainly still have my bad days, but nothing like that. And when I was in the throes of that anxiety, I never would have believed I’d get to this place–that’s what anxiety does, it whispers in your ear that things will never be fine. It lies.

Am I still afraid? Sure. Do I still worry about recurrence/metastasis? Absolutely. But I’m not preoccupied with it. I’m doing my best to keep moving, keep living.

And that’s why this blog has sort of fallen off. It was a place for me to vent about the painful, surreal process of cancer diagnosis, treatment and survivorship. I still plan to talk about that stuff from time to time, but I feel a shift in myself that I think should be reflected in this space, as well. My blog’s tag line is “life after cancer,” and that’s what I’m going to focus on from here on out. Not forgetting the past, but certainly not dwelling on it, re-chewing it long after the flavor’s gone.

So, hopefully you’ll hear from me a little more often. And hopefully what you hear will be less about cancer and more about simply living a good life.