Deja Vu

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The other day, I read an article about a new app produced by the Duke University Cancer Center. The app is for cancer survivors who are having a hard time coping post-treatment. It offers meditation exercises, stress relief techniques and other resources for those who are struggling mentally with the debris of post-cancer life.

Of course, I downloaded it immediately. Upon opening it, I discovered the app is part of a study the school is conducting to help provide better support resources for cancer patients.

As I scrolled through the app answering questions for the study, one of the queries really struck me: Do you find yourself reliving or going back to your treatment?

Today I had surgery again. It was a small revision procedure to fix a wonky place in my reconstruction (yeah, let me dispel any notions that reconstruction is anything akin to having a boob job).

It was my fourth surgery in a year, so it all felt very familiar–the litany of pre-op questions, the antibacterial wipe scrub-down, climbing onto the table in the freezing cold operating room with the blindingly-bright lights in my eyes. Even one of the nurses remembered me from my previous visits.

Oddly enough, today also is the one-year anniversary of my first chemo treatment. The routine of having surgery today conjured up many of the feelings I had that day a year ago. Nervousness over the procedure. Anxiety about how I’d feel after. Squeamish over the needles and blood and pain. Just like this day last year, I’m curled up under a blanket, taking meds, trying to feel better.

And here’s where that question from the app really resonates: Do you find yourself reliving or going back to your treatment?

Trying to eat today has been difficult. Not because of my surgery, but because I keep thinking about how I felt that day after chemo. Just thinking about it almost makes me nauseous. Even this past week as I took my usual walks around the neighborhood, the uneasy feeling in my stomach would return as I remembered taking walks after chemo, trying to power through the side effects of both the chemo and the steroids I took after, in an attempt to take advantage of the benefits of fresh air and exercise.

Everything seems to remind me of that time. The stifling August heat, the way the light looks in the afternoon, the scent of soap I used at the time.

Part of the Duke app study is an attempt to identify the occurrence of post-traumatic stress disorder (PTSD) in cancer survivors. This is something a lot of people don’t talk about or understand. The wreckage after cancer treatment.

Survivors are celebrated, congratulated. “You did it!” “You beat it!” “You can get back to normal now!” While everyone around you smiles and breathes a sigh of relief, you’re still a mess. Afraid of recurrence/metastasis. Dealing with the lingering effects of chemo and surgery (effects that can last for years). Coming to terms with a new, often disfigured body. Being haunted by memories and dreams of the trauma you’ve endured.

I really hope my responses to the study can help Duke gain more insight into the issues that cancer survivors face. Life after cancer is good–truly a gift. But it’s also hard. And if we can figure out new ways to help patients cope, that’s a very good thing.

 

A Letter to My Fear

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This morning I had my first appointment with a counselor at the cancer center. Our session was mostly paperwork and getting-to-know-you questions, but toward the end, she asked me what tools I’m currently using to cope with my emotions in the wake of my diagnosis and treatment.

I told her about this blog and other writing I do, and before I left, she encouraged me to use some writing exercises to help work through all the feelings I’m experiencing now. One of her suggestions was to write a letter to my fear and/or my cancer. It sounds kind of hokey, but I’m going to give it a shot, starting with fear. Here goes.

Fear,

I won’t use the salutation “dear,” as you are no more dear to me than a smear of shit on the bottom of my shoe. You are no friend of mine. You are the enemy. You live to undermine me. To torture me. To keep me cowering in the dark, unable to make a move without worry or anxiety.

You’ve always been around. Even before cancer, you’d rear your ugly head before big presentations, on airplanes and even on days that should have been nothing but happy, like my wedding or the day my son was born.

But now, you’re especially vicious. You’re around every corner, it seems. No longer content to just lurk in the shadows, you parade around in the bright light of day, emboldened and relentless. You don’t care if I’m at work, at home, in the middle of something important or joyous. Like the unwelcome guest that you are, you horn in on good moments, popping up in places you don’t belong. You rob me of sleep, of solitude, of peace.

You drive me to Google symptoms over and over again. Pelvic pain. Back pain. Neck pain. Every little twinge sends me into a frenzy. The old me would chalk it up to sleeping wrong, exercising too hard or eating too much rich food. I’d pop an Advil or antacid and keep on moving. But with you on my shoulder, such nonchalance is impossible. Nothing is brushed off. There’s no such thing as just a little ache. Everything must be over-analyzed, scrutinized, fretted over. Every little feeling could be the beginning of impending doom when you take over my brain.

And here’s the thing–I don’t know how to shake you. I know my good buddy time will help me, but he takes his…well…time to do that. So what am I to do until then? Just put up with you? Allow you to control me? Allow you to make my life hell?

And if we’re being truthful here, even time won’t banish you from my life completely. You’ll always be there in some way, lurking around along the edges, just waiting for the opportunity to strike. You can smell my vulnerability like blood in the water–you know all my soft spots and when I’m at my weakest. No predator has ever stalked his prey with more deft cunning than you.

My only course of action is to face you. To call you out. To tell you to fuck off. To allow the rational side of my brain to tamp down the irrational, obsessive side more often. I know this will not be easy. This is going to be a bloody, brutal fight between you and me. But I’m ready. I’ve fought scarier, more dangerous opponents than you. Ask them how that went. I have reinforcements, and my team is stronger than yours. Let’s do this.

Until next time,

Jennifer

On Shoes Dropping

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Last fall when I was really sick after my first dose of Taxol, my dear friend Carla sent me an incredible book to help wile away the hours of headaches, fever and worry.

The book was “In the Body of the World,” a memoir by Eve Ensler, the writer and activist best known for creating “The Vagina Monologues.” It details her fight with uterine cancer, while giving a healthy dose of perspective in the form of harrowing tales of the horrifically abused women she advocates for in the Congo.

While I related to her words and experiences on so many levels, one point she made really resonated with me above all others. Ensler talks about her cancer diagnosis and dealing with the feelings of “why me?” She explains that having survived sexual abuse at the hands of her father, as well as abusive relationships with other men, she sort of felt like she’d been through her really bad thing. And now, even though she’d already been through hell, she was being put through it again.

Yes! I know it’s unrealistic, but after my mom died, I sort of felt like I’d paid my heartache dues. Sure, I knew there were plenty of bad things that could and would happen to me, but I felt like maybe I’d earned a pass to not have to experience anything really catastrophic for a while.

As Ensler and I both learned, unfortunately, life doesn’t work that way. Bad things happen to good people. Bad things happen to people who’ve already been through more than their fair share of bad things. Bad things happen on top of other bad things. Bad things don’t have a rhyme or reason. There’s no real pattern. And that’s what makes them so damn scary.

As I walk this path of survivorship, it’s hard for me to keep the fear at bay knowing this truth. There are no free passes. This shit could come back. It could come back today, next week, next year. There’s no guarantee.

I made a therapy appointment today. As I wrestle with all these feelings, I know this is the right move for me. Thankfully, the cancer center has counselors on staff to help people like me make sense of all this and try to move on with our lives. I’m excited to take the first step.

 

Survivor’s Guilt

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This morning I had my survivorship appointment at the cancer center. This is a next step in my cancer journey–addressing what I need physically and mentally after treatment.

One of the things that I’ve come to realize is most overlooked/not talked about when it comes to cancer is what happens to a person after they complete treatment. When you’re in the throes of the battle, as strange as it sounds, things are almost easier in a way. You have a focus, you have a plan, and you’re really sort of forced to take things one day at a time–handling that day’s treatment, side effects, etc. There’s a routine of appointments, blood draws, check in, check out.

But then everything sort of stops. Appointments taper from weekly to monthly to every couple of months. Your arm stops feeling like a pin cushion (that I don’t mind so much). Your hair grows back (that I definitely don’t mind). Suddenly the routine changes, and you’re supposed to go back to your normal schedule.

Except, nothing feels normal anymore. Even as I go to work, take care of my son, carry on with my regular activities, things are no longer the same. There’s a new sense of fear, anxiety and even guilt.

I’m feeling the latter more acutely this week. On Sunday, Nina Riggs died of metastatic breast cancer. She was only 39. I’ve been following Nina’s story since last fall when her incredible essay about living with terminal cancer ran in The New York Times‘ Modern Love column. Nina’s story resonated with me in so many ways–as a breast cancer patient, as a mother of a young boy, as a wife, as a woman who lost her mother too soon. We had a lot of things in common–we even lived in the same city and had some mutual friends of friends. I wrote about Nina’s essay in this blog, and she was even kind enough to comment and send good wishes my way.

I’ve cried so much this past week for Nina and her family, her two boys in particular. Though I didn’t really know her, I got to know her through her writing and I could empathize with many of the things she experienced during her fight with cancer. I know how hard it was for her as a mom to know she’d have to leave those boys. My heart aches for her in that regard, and for them as  children who lost their mother too soon.

Even more bittersweet is the fact that Nina has a memoir called The Bright Hour coming out in June, chronicling her experience living with metastatic breast cancer. She wasn’t able to live to see its official release. But I hope it will allow more people to not only get to know her great talent, but also shine a light on a type of cancer that is generally kept in the shadows. Nobody wants to talk about metastatic breast cancer because it’s usually not a happy story to tell. But the fact is there are thousands of women and men who face and live with this diagnosis every year. And their stories are important, and I’m glad at least one of them is going to be told in such a public way.

As I wrapped up my appointment this morning, the NP I met with gave me a hug and congratulated me on reaching this point. I know I should be feeling celebratory–and I do in a way–but it’s hard to totally let my guard down and enjoy this moment. It’s a process, and I have a lot of work to go, and I plan on seeking some help to get there. In the meantime, I’m just focusing on feeling grateful. I know how fortunate I am to be where I am, and that’s enough to get me through today.

 

Smoke and Mirrors

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Searching “vintage magic” to find this image was super-fun. 

In the past month or so, I’ve gotten a lot of compliments. Some of them are on my hair (the chemo curls are coming on with a vengeance) or how healthy I look. But most of them go something like this:

“You are just so strong. There’s no way I could have managed all this.”

“You are holding up so well; I would be  a mess if this had happened to me.”

You get the picture. But the truth is not very inspiring.

Inside, I’m a complete mess. Truly. I just do a good job of hiding it.

This same thing happened 17 years ago when my mom died. I was so composed (at least publicly) throughout the months following her death that I actually had two friends take me aside to tell me they were worried I was in shock and on the verge of a breakdown or something. Little did they know I’d cried a river of tears almost every day, just behind closed doors.

My people are a stoic bunch. I’ve seen/heard my dad cry exactly four times (three after my mom’s death, the other after his beloved dog died). I don’t think I ever witnessed my grandmother shed a tear, despite burying her husband and two children, as well as several grandchildren. Tough as nails. But it’s not that we don’t feel these emotions–we just rarely express them publicly. (I’m sure this is a conversation to have with a therapist one day.)

The truth is, I still cry often. In the car. At night after everyone’s asleep. Holding my baby in my arms in the dark as he dozes off. Even sometimes after doctor’s appointments.

And if you could see my Google search history, well, you’d know what an overly-paranoid freak show I’ve become. I consult Dr. Google on a nearly daily basis. Every little pain or twinge could be something in my mind. I read symptom lists. I read message boards and blogs, looking for people who felt the same things I do but were OK. It’s totally unhealthy, yet I can’t stop.

So, yeah, I look like I’ve got it all together. But don’t be fooled–I’m still a mess inside.