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.

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.

Two Years

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Two years ago today I got the call that changed my life forever. Two years ago today I began a journey I never wanted to take. Two years ago I was diagnosed with breast cancer.

On this second “cancerversary,” I’m in a far better place than I was a year ago. I feel better. My hair is longer and more manageable. I’m not constantly gripped with anxiety.

My doctor’s appointments have tapered to once-a-year checks rather than monthly visits. I’ve grown accustomed to the side effects of Tamoxifen and menopause. I’ve settled into that “new normal” everyone kept telling me about.

I remember my oncologist telling me at one of my post-treatment appointments that there would come a time that I didn’t think about cancer every day. It would no longer be a major part of my life. At the time, that seemed inconceivable.

I still think about it every day, but it has become far less of a focus in my mind. I don’t obsess about it, constantly worrying that every little twinge or pain is recurrence or metastasis. I consult Dr. Google far less often, and I’m for the most part staying clear of the rabbit hole that is breast cancer message boards.

I haven’t forgotten, and I wouldn’t say I’m complacent, either–I don’t know that I could ever get to that point. But I am far less freaked out. And I’m much more focused on simply being healthy and living my life. My “new normal” is certainly different, but it’s sweetly normal, nonetheless.

 

One Year

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One year ago today, my life changed forever.

One year ago today, I got the news no one ever wants to get: “You have cancer.”

My first “cancerversary,” as it’s called by so many who’ve dealt with this nasty disease, felt almost like groundhog day. Last year, when I got the news, I was en route to Chicago for a business trip. The thing is, it’s a trip I make every year at the same time. So, once again, I’m in Chicago. And I feel almost like I’ve been reliving the events of last year.

Just like last year, I spent my layover in the Atlanta airport. And I spent today walking the furniture market in Chicago. I’m staying in the same hotel. Even the weather is eerily the same–hot and stormy.

Looking around this hotel room that looks exactly like the one I retreated to last year, those feelings of terror and despair feel closer to me than they have in a while. And yet, in this same space, I remember good things, too.

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The Chicago sky, last year

In that first awful night after getting the news, I holed up in my room to wallow. I cried–my body heaving with sobs that left me practically breathless. And then, I began to pray.

I’m not a particularly religious person. I don’t go to church. I don’t read the Bible regularly. But, I’m definitely a spiritual person. I pray a lot. I talk to God. And I have a pretty strong relationship with him.

That night, I begged. I bargained. I reasoned. “Please don’t take me now. My son still needs me. Please let me see him grow up.”

And in the midst of my agony, I suddenly felt calm. A strange feeling of peace washed over me, and somehow, I knew everything would be OK.

While some will say it was merely my mind playing tricks on me or whatever, I truly felt it was God letting me know things would be alright.

I’ve carried that moment with me throughout this past year. When things got really hard, and I feared the absolute worst, I returned to that night in this hotel. That moment of peace has sustained me through this ordeal. And though I’m still fearful, I keep that peace with me to calm the worry and anxiety that simmers deep within.

I’ve lost a lot this past year: My breasts, my hair, my ovaries, my peace of mind. I lost my innocence in the sense that I no longer trust my own body. It has betrayed me, and I’ll never be able to feel an ache or pain without that voice in my head wondering if it’s a sign of something much worse.

But I’m still here. And while I’ve lost so much, I’ve gained so many things, too. Perspective. A new sense of gratitude. A renewed appreciation for the gift of life. The knowledge that I am stronger than I ever thought.

Today has certainly been bittersweet, but mostly, it’s been a good day. I’m thankful to be here. To be well. To be alive. And for today, that’s enough.