Vulnerable

I just did some housecleaning to the blog, which was much needed and long overdue. I also did some updating that I should have done a long, long time ago. In case you missed it, I was in Self Magazine in October! I added a link to the online version on the Press page (above).

In mid-September I got a facebook message from a friend from high school, saying that she'd seen the article and me in it, and I should be proud. I was interviewed at the end of the summer and I didn't know what they'd published because I did a fairly lengthy email interview with a reporter and provided a substantial amount of information. I was honest and thorough in answering all their questions. When I got the message, I called Barnes & Noble  right away to see if they'd gotten the magazine in. They had, so I drove there and bought a bunch of copies. So why didn't I want to share this when it happened? Go read the quote. I said all the things they published, but I wasn't sure what it said about me. Sure, it was all true, but it still made me cringe to read what I'd shared about the ugly emotional part of cancer. The part where I felt abandoned and wasn't at all strong or brave, manifesting all the emotions I felt but couldn't put into words through tears shed while driving. Sure, the second half of what was published was the uplifting side where I overcame it and embraced health in the form of running, biking, and peace with my body. But back in October, this was overshadowed by the first part and I was not entirely comfortable with what I had shared with the  entire population of women who read Self Magazine.

Not long after that, the thing showed up on Facebook and I was tagged. I fought back the urge to untag myself, because I didn't want to be the person who was ashamed of admitting to being emotionally vulnerable while having cancer (as I type that I realize how ridiculous it is that I felt that, and I am grateful I didn't untag it).

  I have made a point of being honest about the emotional damage cancer did to me, and now that I've come out on the other side, I hold my head high and admit that it was hard and ugly and took years of writing, running, and reflecting to recover from. I do this because I want other YA survivors who are feeling like I did to know that what they're experiencing is normal, and more importantly, it gets better.  But something about seeing that honesty next to my picture in a nationally published magazine caused a knee-jerk reaction of shame for me, and that is why I didn't share it in October. Like so many things, time has been my friend, and now I have the perspective to see that what I said was exactly what I wanted and needed to say, and there's no shame in telling the truth, even when it isn't pretty.

Back Again

It's been a while.

I just watched the first episode of season two of World of Jenks. I didn't watch the first season, but I caught a commercial for the second season and was intrigued by two of the three stories: A young adult with autism, and another with cancer. Interestingly, I recently came across Kaylin's blog, and then found out she's the young woman featured on the show. 

I'm not sure what I want to say in this post. I'm not even sure why I'm writing this, or why I haven't posted anything since October. Perhaps I feel an obligation to inspire, and I find that my life at present is so normal and typical of someone my age that there is nothing to say, at least nothing inspiring.

I am engaged. I am planning a wedding. I got a new job. I got an adorable dog. I am happy. I am normal. But I have moments when I think that maybe I'm not okay, that I have not dealt with all the residual effects of having cancer. I have these moments when I see other young adults fighting cancer, because it makes me feel something, and it reminds me of everything that happened and all the feelings I am not entirely sure I've dealt with completely, because I still feel this twisting, writhing tightness in my heart because I know what it feels like to be the only person in the room who's had cancer.

Then there's the other side of it. There are times I am in the company of people who don't know that I've got all these scars;they don't realize all the seasoned wisdom I've got in my back pocket; I have had more medical procedures than most people twice my age, I've known a lot of people who had a lot in common with me and they died. And there's no good way to bring that up. So I just keep letting these people think I'm typical, because there's no good way or reason to enlighten them as to why I know how a stem cell transplant works, or why hearing about an older friend with cancer who I've never met brings tears to my eyes.

I ran outside tonight. It's been a cold, windy, rainy few months, with not a lot of running, especially not outside. Tonight I thought a lot about all the things I just wrote about, and when I got home I had a notable running high that made me very glad I ran, and regretful that I haven't been doing much outdoor running in recent months. As things thaw out, I'm hopeful I will do more running, because tonight made me realize how much I've missed it.

Invincibility...rediscovered

When I was diagnosed with cancer, one of the first things I was able to articulate in terms of what I was feeling- but kept to myself- was the the sensation I'd been robbed or violated. My body was playing a cruel trick on me, and instead of being the vehicle to propel my spirit forward, it was attempting to kill me and all the potential I had. At twenty-one I didn't exactly know how it would all come together, but I knew I had great things to do, people to save, lives to impact, and suddenly it was all in jeopardy. There was this sense of loss, and I mourned for a long time.

What did I lose? I described it as my invincibility. I was robbed of my invincibility. Cancer took an open and endless future and built an invisible brick wall in front of me, and while I didn't know exactly where it was, I believed that at some point I would hit that wall, and it would all be over. I also had this picture in my head of this superhero cape being ripped from my shoulders. I carried this sentiment for a long, long time. For years I dreaded the day I'd hit that wall, because I knew it was there. I was angry, and I wanted my cape back.

At the beginning of the summer something funny happened. I went for a bike ride. It was one of the first long rides I did, and when I came home, I noticed my arms were a little pink. I gasped and felt a deep sense of guilt. I'd forgotten to put on sunscreen. The guilt was tempered by a pride and excitement, I had forgotten to put on sunscreen. I could not remember the last time I'd done that. As a melanoma survivor, I am very, very, very well aware that I should wear sunscreen, and I do. However, this particular day, I forgot. In the last six years, I had never, ever forgotten to put on sunscreen.

While I was mad I'd forgotten, I couldn't help but smile, because I knew in that moment that I'd just gotten my cape back. By forgetting the sunscreen, I'd done something the cancer-fearing, robbed-of-my-invincibility self would have never done. As for that invisible wall, I'm not sure whether it's in front of me or behind me, but I've made peace with that, because I wouldn't take back the journey that brought me here.

The Sixth Year

“Cancer. The word meant the same to me as tsunami or piranha. I had never seen them; I wasn't even quite sure what they were, but I knew they were bad and I knew in many cases they were deadly.” (Natalie Palmer, Second Kiss) 

 June 5, 2006 is a day that forever changed the course of my life. I learned what is was like to stand on the beach when the proverbial tsunami hit, or swim with the metaphorical piranhas. I found out I had cancer.

Flash forward six years to the day. Tomorrow will be a starkly normal day, and I'm pretty happy about it. I'll get up early and go for a run if it's not raining, then I'll go to work, grad school class, and come home and make dinner. I've celebrated my cancerversary each year I've survived, and while I'm personally reflecting (and rejoicing) that I'm still here- breathing, running, and living, I'm content at this point to be 'normal' and embrace the normalness I've found since cancerversary number five.

That said, I've got a lot to be grateful for. My life has come together in so many ways and everything seems practically perfect- although I hesitate to use that word because if everything is perfect, it can only get worse. As if maintained health isn't enough, I have  gotten engaged, landed my dream job, and rescued a dog this year. All of these things mark a new level of survivorship that includes planning ahead for a lifetime, rather than just a few months. Switching jobs carries a level of risk I was once too terrified to even consider, for fear of losing tenure and the security of medical benefits that came with it. Not to mention that the responsibility of managing my complex schedule of doctors' visits has now  been traded for trips to the vet and a groomer. 

Life is strangely normal, and I think what makes it so unfamiliar is that I have spent so many years now living a life that's anything but. It was that 'new normal' they tell you you'll find when you get cancer, a normal that's strikingly not. But here I am, the only remnants of cancer hidden- faded scars under clothing, a few pills each day to replace hormones chemo stole, and a bracelet cautioning lymphedema risk. I'm not sure I ever would have ended up exactly where I am now if I hadn't gotten cancer, but that doesn't really matter, because when I look around these days, I like what I see. So now that I'm here, I think I'll stay.

Hope, Love, Run,
Marathon Girl

War is hell…And so is cancer.

I recently read an article on the PBS website titled If It’s Not a war on Cancer, What Is It? Apparently the Brains of the oncology field have decided that the “War on cancer” metaphor is outdated, kind of like how every generation major companies redesign their logos, like when Pepsi changed their font midway through my childhood. The article then goes on to offer an array of new terms to replace the ‘War on cancer’ metaphor. These new concepts came from top cancer researchers. I kept reading to see what a prominent cancer survivor would suggest as an alternative to the war metaphor. Interestingly, the only experts consulted were researchers, not survivors.

I didn’t find the idea of changing the metaphor unreasonable; I mean I don’t really have a problem with calling the big-picture concept of eradicating a disease a war. It’s a fitting metaphor. But I’m open to new ideas. However, the metaphors presented ranged from obscure to quasai-reasonable. I’m not trying to be cynical here, but I just found the options presented were about as strong as my immune system on chemo and the absence of the survivor perspective was blatant. Here are the proposed replacements for the ‘war on cancer’ metaphor:

A Wildfire. Specifically, one which is currently in the containment phase, but which we need to learn more about in order to put it out.

A Tide. Really? A tide comes in and goes out. It’s a cycle that is ever repeating. The researcher explained that like a tide, cancer is “ever looming” and “there’s a definitive moment when it turns.” However, let’s think big picture here, the tide never goes away. Do you want to characterize a disease as something that is constant and uncontrollable by human power? I don’t.

A Fight for Peace. Personally, I don’t want to make peace with cancer. I don’t want to negotiate with it and settle a score, only to have it turn around and secretly build nuclear bombs in my liver and lungs despite our peace treaty. Most annoying, was the researcher’s note that “It’s not an achievable end but something that’s going to change as we go.” That’s interesting. I thought we were trying to reach an achievable end…the end of cancer.

Our Moonshot Moment. Aside from the fact than an entire generation doesn’t know what this means, this one is actually pretty good. The JFK quote the idea is based on is essentially this: “We choose to go to the moon in this decade…Because that challenge is one we are willing to accept and one we are unwilling to postpone. And one which we intend to win. This is our moonshot moment.” I like the sentiment, but until I read the quote, my thought on the Moonshot Moment heading was “what the…?”

A Battle with Love. Honestly, love isn’t going to get rid of cancer. Cancer is hard and people fighting it need the love and support of their families. However, when it comes to eradicating cancer, either from individuals’ bodies or the population as a whole, love alone just isn’t going to cut it.

A Team Sport. I thought this one had some potential, except I think most people think of team sports as fun, enjoyable, and something you might want to witness if you aren’t playing yourself. Coach, can you bench me? I don’t want to play the Cancers today.

A Multi-Fronted War. Wait a second…I thought the point of this exercise was to get rid of the war metaphor? This Johns Hopkins doc actually did a nice job proving why the war metaphor was still relevant. Way to go. I think overall I agree with Doctor Vogelstein. Here’s my perspective on why cancer is a whole lot more like a war than it is a wildfire, tide, fight for peace, moonshot moment, battle with love, or team sport.

Cancer is like a war for a lot of reasons.

1. People die. There are casualties in wars. Until there is a cure, people with cancer are like soldiers, drafted against their will to fight until their duty is served, or until the war kills them.

2. Families fight together. Cancer is rarely done alone. While the soldier fights on the battlefield, family can only wait, watch, and hope that their loved one makes it through and although they may never be the same because of the war, if you’re lucky, they survive.

3. It’s ugly. The military shaves heads, and chemo takes hair too. Beyond the literal, war is grisly, taxing, and pushes the limits of the human spirit to the brink of destruction. Cancer does this, too.

4. Within a war, there are battles. Fights are won or lost on a small scale, and these contribute to the overall effort. Wins in battle can bring the soldier home sooner. A loss leads to more planning and a new strategy. A successful surgery, radiation technique, or chemo can lead to remission and health. While a tumor not responsive to a drug forces doctors and patients to strategize and determine the next best option.

Perhaps the reason oncology experts find the war metaphor outdated is because they’ve never been a foot soldier, drafted against their will. Just like politicians argue semantics, the oncology experts are failing to see that there is nothing wrong with the metaphor. For each patient diagnosed, the war is fresh, raw, and well, a war. I like the war metaphor best because it doesn’t need an explanation. War is universal. Everyone gets it. There’s no room for misinterpretation or semantics. We want to win. We want cancer to lose.

So why not call it what it is? If you really want to change the metaphor, talk to the people fighting the war. If you could change the ‘war on cancer’ metaphor, what would you call it?

Hiatus

Ever needed a break?

Well, I did. I generally apologize for being an absentee blogger, but I'm not going to this time. The last month (and then some) has been a whirlwind.

Here's the short list of things that I've done instead of updating my blog:

1. Grad school homework
2. Got in a car accident (I'm okay. Sadly, my car was not)
3. Built an award winning gingerbread house
4. Hosted Thanksgiving for the first time
5. More grad school homework
6. Went to court for the car accident
7. Saw doctors
8. Did an insane amount of work for my actual job
9. Christmas shopping/decorating
10. More grad school homework

Sadly, a few things have fallen by the wayside while doing the above, among them, updating the blog, cleaning my kitchen, and putting away laundry...Oh, and sleeping more than six hours a night. This weekend things finally seemed to calm down and I was able to do all the things I haven't had the time or energy to accomplish lately. I spent a glorious Saturday night taking a bubble bath, watching TV, and eating a bowl of Raisin Bran for dinner. Then I fell asleep at 9:30. Normally, this isn't my idea of an awesome Saturday night, but sometimes all you really want is the freedom to guiltlessly do nothing. This morning I took pride in leisurely completing household chores before going to get a massage.

I'm feeling much better, and after this weekend I'm not dreading getting up at 6:00 AM tomorrow and going to work. So with the conclusion of this post, I guess you could say I'm back.

Hope, Love, Run

Marathon Girl