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.

Hide and Seek

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My mom, me and my sister

The other night, my son and I were snuggling in bed when he pointed to a photo hanging on the wall and asked “Mom, is that your mama?”

The photo–or photos, rather–hang in a collage frame my aunt and uncle gave me as a wedding gift. It was my favorite wedding gift, the only one that made me cry–a collection of images of my mother as a baby, teenager, on her wedding day, with us as kids, alongside similar images of me. A couple of the shots I’d never seen, making them the equivalent of long-lost treasure.

My son is only three, so questions about my mother make me a bit nervous because I’m not quite ready to explain the concept of death to him. I told him, “yes, that’s my mama,” and he replied, “I wish I could see her.” “I wish you could, too, baby,” I replied, trying my best to hold back tears.

Belonging to this terrible club I never wanted to join–children who’ve lost parents–is a game of hide and seek. Once you get past those first few years of grief–the all-consuming kind that can take your breath away–you find ways to live with the pain. To file it away in the back of your mind. To find a good hiding place where it can’t find you. Only, every now and then–usually without warning–it pops back up, and you grieve all over again.

My heart ached as I talked to my son about the grandmother he’ll never know. I hurt for how much I know she’d love and treasure him. I grieve the utter delight he would’ve brought her.

Holidays like Mother’s Day tend to dredge up these feelings for those of us missing our parents. We plaster on smiles and pretend everything’s fine, when deep inside, we’re hurting. Grief has found us again.

And while this holiday has gotten decidedly happier for me in recent years, it’s still bittersweet. As I revel in my own role of mother, I ache for the one not here.

Mother’s Day

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Me, my mom and my younger sister, 1985?

For many years now, Mother’s Day has been a difficult holiday for me. I lost my mom about a month-and-a-half before Mother’s Day 2000, and since then, the day has been a yearly reminder of the huge void in my life.

But over the past few years, I’ve slowly started to change my perception of this day.

In the decade since I met my husband, I’ve joined him in celebrating his mother, my now mother-in-law. From pretty much the moment I met her, she has treated me like a part of her family. And while she’s not a substitute for my own mom, she has become someone I depend on, confide in and love as I would my own mother. I am so grateful to have her in my life.

I’ve also been so very fortunate to have a circle of lifelong friends whose mothers I consider second-moms. I grew up in these women’s homes, and they’ve rallied around me when my mother passed, when I got married, when I had a baby and when I faced cancer. The love these women have shown me over the years makes my heart swell, and I am so thankful to have the kind of friends who gladly share their wonderful mothers with me.

I’m also truly blessed to have an older sister who’s shown me what it means to be a great mom. Dawn is 14 years older than me, and she’s raised two intelligent, kind, successful women, instilling them with a sense of confidence and a strong faith that sustains and guides them. When I think about the kind of mom I want to be, I often look to her example.

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Me and my sweet boy, photo by the amazing Jordan Brannock

And, of course, the biggest and best thing that has changed my feelings about this day is becoming a mother, myself. My son is my greatest gift, my greatest achievement, my greatest love. He fills my heart with a feeling of pure joy and love that I never thought possible. He inspires me to be a better person, and he makes everything I’ve endured over this past year worth it.

Is Mother’s Day still a hard day for me? Absolutely. I will never stop missing my mom, and the hole that her loss has left in my heart will never be filled. But I know that I am lucky to have some incredible mothers in my life, and I have the opportunity to be that for my son, and for those things I am forever grateful.

Notes from the OR

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Pre-op fashion

Yesterday’s oophorectomy went well. My doctor didn’t see anything that looked weird (huge sigh of relief), and the procedure was pretty uneventful. I was home by around lunchtime.

My torso scar collection has grown by three, although these are pretty small (and let’s be honest, my bikini days are over anyway). I’m sore, but it’s not unmanageable–much less pain than my c-section or mastectomy.

I’m not going to lie, it was a little sad to take a pregnancy test (standard procedure) and then sign a form confirming that I realized going through this procedure meant I wouldn’t be able to have any more children. It’s weird because even though we’d already made the decision to only have one child, the finality of all this still feels like a loss.

But what I’m gaining–some additional peace of mind–is worth it. At the end of the day, I have to remember that it’s not about mourning children that won’t be, but celebrating the gift of time with the precious child I do have.

In Dreams

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For the first couple years after my mom died, I had a recurring dream about her.

The dream would change slightly, but would always involve her still being alive, and having left us in some other way. She and my dad would divorce, or she would simply go away, only to return later. I would wake up from these dreams so angry. Why did she leave us? How could she abandon us when we needed her? And then once that half-asleep anger subsided, the wave of pain and grief would wash over me.

I suppose this was my subconscious’ way of sorting out her loss. Her death was so sudden, so completely jarring, that my psyche just didn’t know what to do with it.

I haven’t had one of those dreams in a long time–until today.

I took a sweet nap with my son this afternoon, a rarity these days since he’s hitting that age where naps aren’t guaranteed. In the midst of our slumber, she returned.

This time, I found out she’d faked her death to leave us. But she eventually came back and moved into an apartment in my hometown. She would occasionally text me, or send me a card in the mail, but we never saw each other.

In the dream, I called my dad, asking him about her. He said they’d gone to dinner and they’d had a good time. He said she seemed happy, and he seemed OK with whatever the status of their relationship was. I tearfully asked him if she said anything about seeing me or my sister, or ventured to explain why she left. He said no to both counts. Then he changed the subject and started talking about something unimportant that I didn’t care about–this, a bit of reality since he has a tendency to do that when the conversation hits a subject he’s uncomfortable with.

Upset, I went to see my sister. I asked her if she’d seen mom, and she said no, sort of in an exasperated way, like, “Not this again, just let it go.” But I couldn’t let it go. I remember saying, “Why would she go to such lengths to leave us? Why doesn’t she want to see us? Why doesn’t she want to meet Alex?” She didn’t have an answer.

The last thing I remembered before waking up was trying to figure out why she’d gone to so much trouble. I recalled standing in the funeral home, looking at her lifeless body in the casket–the bruises on her forehead from the dashboard, still visible through the heavy pancake mortician’s makeup. The plastic wrapping I could see around her wrist inside the sleeve of her dress–likely some sort of preservation method since we had to wait a week to hold her funeral because my dad was so banged up from the accident. Was none of that real?

I awoke with that same dazed, angry feeling I haven’t felt in years. And then the familiar rush of sadness. Alex was snuggled close to me, and I held him a bit tighter and kissed the top of his head, breathing in the sweet scent of baby shampoo and wild boy. There’s no way she’d miss this.

Grief is a sneaky beast. Just when you think you’ve got a handle on it, when it feels like enough time has passed to ease the burden, it sneaks back up on you, often in unexpected ways.

I’ve missed my mother so acutely the past few years. Through my pregnancy, motherhood and my cancer journey, I’ve longed to talk to her. To lean on her. To hear her voice tell me she loves me. That it’s going to be OK.

There are some losses you never get over. Some that shake your faith and leave you wondering what the hell just happened. Time passes and you learn to manage it, to move on and keep living. But that grief is always there, waiting to haunt you even on the prettiest of days.

Seventeen Years

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My sister, mom and me at the Outer Banks sometime in the ’80s.

I hate April Fool’s Day.

I’ve never really been into pranks or trickery, and there’s something about this day that gives mischief more of a mean-spirited edge. And social media has made it even worse. Every year there are the fake engagement and pregnancy announcements, fake moving announcements, fake whatever announcements. It’s annoying and not really funny at all.

Of course, my hatred of this day is about more than just an intolerance of childish tomfoolery. My mom died in a car accident on April 1, 2000.

There’s something especially cruel about getting the dreaded call from the hospital that there’s been an accident on April Fool’s Day. For a split second I thought, “is this some kind of horrible joke?”

This year, the anniversary fell on a Saturday, just like the day it actually happened. My sister Wendy texted me in the wee hours of Saturday morning, likely awake with her thoughts, to tell me that having the anniversary fall on a Saturday again makes it harder for her. I nodded as I read her words, feeling the exact same way.

Just as it was on that horrible day in 2000, April 1 this year was absolutely gorgeous. One of those warm, not-a-cloud-in-the-sky days that make you revel in spring. As I sat in my backyard looking up at that sea of light blue, I couldn’t help thinking back to that day so many years ago.

It’s kind of amazing that I can remember most of the details of that day as clearly as if they’d happened just last week. I remember the slight nip in the air, what I was wearing (a pastel striped t-shirt from Old Navy and jeans), what I was doing when the phone rang (lying on my dorm bed, waiting for my parents to arrive for a visit). I remember bargaining with God as I careened down I-40 to the hospital in Chapel Hill. I remember realizing my mom was gone when the hospital staff ushered me into a small, private waiting room outfitted with an overabundance of tissue boxes and Bibles. I remember being taken back to see my father, unconscious on a gurney, disrobed and covered with a sheet up to his chest–preparation for surgery. I remember the stunned voices as I called family and friends to tell them the awful news.

In the years since her death, I’ve tried to mark her anniversary in a positive way. Some years I’ve volunteered or participated in a charity walk, others I just try to do fun things to keep the mood light and my mind off the sadness.

This year, I spent the day with Rodney and Alex. We ate pancakes for breakfast, snuggled in bed watching cartoons, went to swim class, went to our neighborhood Easter egg hunt and played in the yard. Nothing particularly remarkable, but without a doubt a good day.

I think this is what my mom would want–her loved ones moving on, living their lives. She’d want to be remembered–and she was–but I don’t think she’d want me or my sister to dwell. I told Wendy this when I returned her text. I asked what she had planned–a trip to Virginia with her boyfriend to see an art exhibition–and told her my plans for the day. And then I told her I loved her.

I know somewhere out there in the ether, my mom was glad.

 

 

I Gotchu

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Me and my baby

One of the most exciting stages of parenthood is when your child learns to speak. There’s something almost magical about a baby going from this drooly, crying blob to a little person able to express himself verbally. It’s a long process, but one with lots of fun stops along the way.

In the past year or so, my son’s vocabulary has exploded. He’s almost two-and-a-half, and since uttering his first word (“mama,” for the record), he has become more of a chatterbox with each passing day. Much of what he had to say before was merely baby babble. And he still engages in his fair share of gibberish, but more and more, his words are actual words, and they’re assembled in phrases and sentences. It’s pretty amazing to witness.

Much of his current vocabulary revolves around cartoon characters (Mickey Mouse and the Paw Patrol are big topics of conversation in our house), his favorite foods (hot dogs, grilled cheese, apple juice) and there are a couple words he’s uttered that I’m mortified he knows (we blame dad’s potty mouth for those gems). But for me, there are two phrases he uses often that just about melt me to the floor.

“I pick you,” is the toddler version of “I’d like to be picked up.” He almost always holds his hands up to me as he says it, and there is nothing sweeter as a mama than to have your baby stand before you with his arms raised, essentially saying he chooses you. Does he necessarily mean it in a literal sense? No. But in a way he does because my arms are the ones he wants wrapped around him.

Which leads me to my current favorite toddler phrase–“I gotchu, Mama.” This is usually uttered late at night, little arms wrapped around my neck, head resting on my shoulder, or in the morning when he wakes up in the bed next to me and clutches tightly for a groggy hug.

If I could bottle the feeling it gives me, I’d be a millionaire. It’s the salve that cures the trivial woes of the day. It’s the balm that heals any hurt feelings. It’s what dries my tears of fear, worry and anxiety when the darkness comes. Hearing those sweet words whispered in my ear as my child clutches me lovingly makes everything better.

Having cancer has changed me as a parent. Yes, I still have my bad days/moments and get frustrated by crankiness, tantrums and misbehavior. But I tend to pause and savor the good moments a bit more nowadays. I know how important these moments are–even the littlest ones–and I’m so thankful to be here for each and every one of them.

 

Couch Life

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Earlier this year, my husband and I bought new living room furniture.

We didn’t intend to make such a large purchase–we were initially just looking for an oversized chair to replace a lumpy sofa that had long outstayed its welcome. We went to a local furniture store that I love and found the perfect chair in a display right inside the front door. At first, we were only going to purchase that one piece, but it also had a matching sofa and the deal was just too good to pass up.

As the salesperson gave us the pitch on the set, she showed us that both the chair and couch were actually recliners. The couch has a dual-electric recliner feature. We weren’t in the market for recliners, but we liked the look and feel of the furniture so much that we decided to pull the trigger any way.

This past week, I have been SO thankful we purchased this furniture, particularly the couch. It has been my home for the past seven days, since it’s pretty much impossible for me to get in and out of our bed. With a pull of a lever, the electric mechanism sits me right up, or reclines me into a relaxed position. For someone whose arms and torso are extremely sore, this is pure magic.

I’m just over a week post-op now. I’m still really sore, and these drains are still driving me nuts. Each day is a little better, but I’ve still got a long road before I feel halfway normal again.

I had my first post-op appointment with my plastic surgeon yesterday. She looked at my mangled chest and said everything looked good (relatively speaking), and she celebrated my clear path report with me. She also gave me the terrible news that I’m not getting to ditch these drains until the end of the month (long sigh).

The day before yesterday, we went to my in-laws’ house to see my son. He’s been staying with family since my surgery to give me some time to recover. This is the longest I’ve ever been away from him, so it was a pretty emotional visit for me. I cried when he walked in. I cried when he gingerly hugged me, trying to be gentle to keep from hurting “mommy’s boo-boo.” I cried half the way home (we left him there for a couple more days to give me more time to recover).

But, he’s coming home tomorrow. I am over the moon! I have had moments of excruciating physical pain with this surgery, but nothing compares to the emotional pain of being away from my child.

This time tomorrow, I’ll have company on my couch, and I cannot wait.