Sunday, November 10, 2013

Bouncing Back (and other stupid notions)

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It’s amazing to me how my brain is able compartmentalize the events of the last few years. As the “cancer” phase seems to be getting more distant and my body heals, I find myself going through major swings of emotion. It’s almost as though it all happened so quickly that I didn’t get a chance to really process it… so as life settles down, I take turns diving into the different “pools” of events… cancer, New Zealand, Dan, Africa, Thailand and the many moves, road trips, and relationships built in the time and space between. I’m not exceptional… but it’s a lot for this little brain of mine to process. Every once in a while I’ll be sitting in my cushy chair at my cushy desk in this ivory tower and a memory will flood my mind and stops me cold.

When I was in New Zealand we were lucky enough to visit Stewart Island – a little speck of land just below the South Island. It’s a gorgeous place magnified by the fact that 400 of the best people on the planet have gravitated to Half-Moon Bay and have made it graciously, instantly comfortable.

Many of the people in Stewart Island knew who we were before we arrived because we’d been on TV a few days before. So when we walked down the street people would say, “Oh, you’re the Great Walkers!” I’m not gonna lie, it was fun… So one night when the team was getting ready for dinner, catastrophe struck when we realized we were out of wine. It was 4:50 pm and I had ten minutes to get to the only market in town – 1 km away - before it closed. So I ran, in flip flops to the store to find the doors already locked. Bummed, and out of breath, I rested my forehead to the glass door. I looked up to find the woman inside watching my moment of defeat. She opened the door… “You are a great walker!” Yep! I explained that the team was in need of wine… she let me in. I bought two bottles of wine and some ice cream. As I was checking out, the woman said, “You’re a survivor.” Yes… I am. “My niece had breast cancer as well.” I’m always afraid when people say this… Obviously the next question is, “How is she now?” But before I got a chance to ask the question the woman explained that her niece was young when she was diagnosed, like me… 34 years old. She had chemo and mastectomies and radiation… like me. And was declared “cancer free” - like me. And then (which is where it gets scary) her cancer came back. And then it killed her.

I was the only person in the store with this woman who had lost her niece to the disease that tried to kill me. I started crying. I don’t even know why I started crying, but I had tears and snot and all the bumbling works. The woman apologized for making me cry and gave me a hug. I felt worse for crying, I’m sure. What an idiot.

So I meandered back to the house– stopping at the community center where Karl (our videographer/photographer) had been working on the only wifi on the Island (trying to get Air New Zealand the video they needed for publicity). Somewhere between the store and the community center the bag carrying all my groceries split and my wine fell onto the sidewalk and broke. I had a total meltdown. Sobbing on the street about my wine. And cancer. And death. And life. And loss. And happiness. All of it hitting me there, on the sidewalk in Stewart Island. I found Karl outside the community center and cried on his shoulder for an hour or so before he walked me back to the house.   
 
And there you have the memory that came flooding back to me today…

A couple of days ago I was tooling around on facebook and saw Angelo Merendino’s stunning photo-documentary of his wife’s battle with cancer. I cried when I saw the pictures, but I cried more when I read her story. She, vibrant and beautiful and healthy – diagnosed originally in 2008, had chemo, mastectomies, and radiation and was given the “all clear” by doctors only to be diagnosed with metastasized, terminal cancer a year and a half later. I have spent the last couple days combing through her blog, crying.

It’s one of the pools I find myself diving into more often recently… the breast cancer pool. A deeper, darker pool than the version I swam in. When you get diagnosed with cancer you are forced to deal with the day to day activities of fighting the disease. You don’t (or at least, I didn’t) get a chance to really think about the big fat picture of how it affects the rest of life… you’re so concerned with having a rest of your life. And maybe it’s obvious to most that this experience would alter everything going forward… But to me, it was always about returning to normalcy. I’m finding as I jump from one pool of memories to the next that “normalcy” is a stupid idea… Also, being a quality I never really acquired, probably not something I’m capable of returning to.

So Angelo Merendino’s work is breaking my heart. And his wife’s blog breaks my heart because I read it and re-read it and I know the big words and the medicines and I can relate to the feelings that she and her husband describe. I have a hard time with the fact that what grew inside her breast also grew inside of mine. I have a harder time understanding why I get to sit in this ivory tower and her doting husband has to navigate this life without her. I am shattered when I get to the part in her blog when she is told that she has cancer in her bones and her liver. I break because I think back to the day that I got my good news – the day I was told I was pathologically clean – and I imagine what it would have felt like and meant for me if I had gotten different news. I feel a little schizophrenic when I think about it because I feel so lucky to be alive, and so confused about why I’m alive at the same time. And then, before I even realize I’m confused, I feel like I’m not doing enough with this life.

More, more, more… I need to be more. And I want to do more and I want to feel more. But then I’m tired and I remember what my friend Gianna (who also was diagnosed, treated, cleared, and is now battling her second round - this time the metastasized version of the beast) told me: Don’t over-train. Don’t drink too much wine. Don’t eat crap. She is genuinely trying to tell me how to prevent recurrence. She wants to save my life.

I want to make sure I’m living enough, but I don’t want to live too much.

All of this happens in my head in a split second and then I want to cry. But I’m not capable of crying much these days, unless I’m reading Angelo or Jennifer Merendino’s blogs. Which I guess might be why I keep reading them even though everyone keeps telling me to knock it off. Maybe I need to cry and process the idea of a new, metastasized, deadly cancer to be able to move forward with a healthy body? I get the impression that people want me to get over it. The cancer’s gone, right? And I have hair now and I can run and I ride my bike everywhere I go… so I should feel good! Right!?!? Easier said than done, peeps. There is nothing, no matter what, that will ever give me the sense of invincibility I once had (or nipples, for that matter).

The fact is, there is no bouncing back. I hate that stupid term. There was no bouncing in the first place… all good, difficult things (like completing an Ironman, or traveling Africa - solo) come from hard work. Recovery is hard work. The swirling emotions that surround being poisoned, facing death, and the reclamation of a body that has been through war are exhausting and confusing and really, really shouldn’t be tossed aside as something I (or anyone else) should be able to bounce back from, or “get over.”

Do I sound bitter? Maybe. But trust me when I say that the gratitude that comes with having life doesn’t come with some moments of confusion. I keep hearing the term “survivor’s guilt,” but I think it’s more a combination of “survivor’s fear” and “survivor’s guilt” for me. Friends and family get upset when I talk about the reality of recurrence, so I’m not supposed to talk about it. They say “stay positive” – but that’s crap. I’m pretty sure Jennifer Merendio didn’t bring her cancer back by thinking it was going to come back. Same is true for my dear friend Gianna. Reality is, my friends and family are probably as scared of coming back as I am – they’d rather not hear about my concerns of swimming in that dark pool. It doesn’t exist if we don’t talk about it… right?

Wrong.

My point…

Wait… did I have a point?

I read through Jennifer’s blog and I’m so disappointed that I didn’t keep a better record of my time going through treatment. I tried, but was everything was so hazy and I was so frustrated with the fact that my brain wouldn’t work that I usually gave up. I’m realizing now that maybe it’s not important to have a point. I just need to get stuff out.

That being said, cancer, survival, and the ideas of “bouncing back” or normalcy have forced me contemplate a couple of really important things. 1) Why do I feel like my value is directly related to how fit I appear? I am strong, but my appearance doesn’t say so and for some reason I feel like this says something about who I am. 2) Does the fact that I survived cancer mean that I should be happy with a body that doesn’t function/perform like it once did? Did I unknowingly trade my fit, muscular body for life? Knowing that there are people like Angelo out there who will mourn the loss of their partners, mothers, daughters, sons and fathers to this awful disease makes me feel like a jerk for even asking the question. And while the alternative to survival doesn’t make survival an easy task, I know that the answer could very well be, “yes” – and then I feel thankful again. (Hello again, schizo… )

Once again, the aftermath of the past year has me struggling to find a balance of gratitude for life and the ability to do what I can do and the drive for more fitness, more knowledge, deeper relationships, and more life in general. Grateful for the struggle and for life – onward, I go. 

2 comments:

  1. Hi there Stephanie, I was just reading up on your post and had a quick question about your blog. I was hoping you could email me back when you get the chance, thanks~

    Emily

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  2. Hi Emily- comment back with your email address (I won't publish it) and I will shoot you an email.

    Thanks!

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