Cancer: A Retrospective

Eight years. That's 2,928 days. Or 70,080 hours. That's how long it's been since I was diagnosed with cancer. I've been thinking a lot about this upcoming cancerversary because the last check-up I had with my dermatologist resulted in two biopsies. It had actually been two years since my last biopsy, which was a record length of time for me, since my diagnosis. One of the biopsies came back atypical, and the pathologist recommended going back in to get clearer margins, which I decided to do, because I don't believe in watching and waiting, given my history. The result of my choice is that I will have stitches on my cancerversary, which hasn't been the case any June 5th since the day the phone rang and it was cancer back in 2006.

The stitches I have right now have caused me to do a lot of reflecting on all the ways things are different in the world of cancer today than they were eight June 5ths ago. These are the ways the world of cancer has changed in the last eight years, and happily, it's all good!

1. Stupid Cancer: When I was diagnosed, I searched the internet, library and hospitals for some kind of support for people my age. There. Was. Nothing. Within the first six months of my diagnosis, Matthew Zachary- now a cancerlebrity- launched his site 'I'm Too Young For This!' and the young adult cancer movement was born. I met Zachary in 2008 at the Livestrong Summit, and he very quickly solidified a cohort of young adult survivors at the summit and has continued to pull together a once unidentified population into a unified and recognized group. I2Y was later transformed into 'Stupid Cancer'. To date, the Stupid Cancer Facebook page has close to 188,000 likes. It's a pretty big deal.

2. Young Adult cancer is a thing. Eight years ago, it wasn't. There was a time when organizations like the American Cancer Society denied the existence of young adult cancer and grouped individual survivors in with all the other survivors of the same type of cancer, so at the time, I was clustered with a whole lot of middle aged men, because that's who was primarily getting melanoma eight years ago. This has also changed, and melanoma is now at the top of the list for young adult women. 

3. There are entire organizations dedicated to meeting the needs of young adults who have cancer. I went to Montana and attended a camp that primarily focused on children, but did a twice-per-year retreat for young adults. I had to go practically to the other side of the country to meet  people under the age of 30 who had cancer. Now, there's still Camp Mak-A-Dream, but there's also AKP ski and bike retreats, First Descents kayaking, surfing, and rock climbing retreats, True North Treks, Athletes for Cancer/Camp Koru, just to name a few. 

4. Now that young adult cancer is a thing, there's legit research being done. I've participated in a TON of studies...One longitudinal study through Duke University that set out to demonstrate the long-term benefits of adventure therapy in the form of First Descents camp, as well as a whole host of others that focused on identifyiing needs, support modalities, gaps in medical care, and emotinal well-being, just to name a few. The next step is improving the stagnant survival rates for young adults. Given the progress we've seen in the last eight years, I'm optimistic. 

5. The potential return of my cancer is no longer a death sentence. When I found out my cancer had spread into my lymph system, I did a year of interferon 2b-Alpha because there wasn't anything else I could do, and I wanted to buy myself time. If my cancer was going to return, I hoped I could delay it just long enough that there would be some drug that would treat stage IV melanoma, because it 2006, there weren't any. Stage IV was a terminal diagnosis with a three-months-to-live prognosis. The Boston Globe just published this article detailing the progress that's been made in treating advanced melanoma. Thankfully, people are finally living with stage IV melanoma, not just dying from it. 

6. Young adult cancer is being portrayed in books, movies, and on TV. Clearly there couldn't have been press and media about young adult cancer when it wasn't a thing, but it's notable that within the week of my eighth cancerversary there is a movie coming out that depicts the love story of two young adult cancer survivors (the film adaptation of John Green's The Fault in Our Stars) as well as a TV show focused on a young woman diagnosed with cancer (ABC Family's Chasing Life). 

7. I like going to the oncologist. We go way back. There was a lot I didn't know about him when we first met, but he got to know me pretty quickly when I was at the hospital ALL the time for a whole year. He's been amazing all along, listening when I told him I needed steriods to cope with the chemo, being flexible on how often I had to get CT scans when I got concerned about all the radiation I was being exposed to, and calling my mom that time my phone was dead when he had to tell me it looked like I'd gone metastatic based on the scans. He always knew just what to do, or it seemed like it, since he listened to me and let me be a part of all the decisions. What I've learned since then is that he treated me like his daughter, which wasn't hard since he actually has a daughter who's right around the same age as me, in the same field, and we've crossed a lot of milestones right around the same time. These are the things we talk about when I go to see him every six months. After eight years, it's as much social as it is medical.  

The world has changed for me and for young adult cancer survivors in general. At the risk of sounding like a crotchety twenty-nine-year-old old woman, I'd like to point out that things have changed a lot since I was diagnosed- I can only imagine what progress will be made as I rack up the cancerversaries in coming years. Here's to many, many more!

Cancer Shaming

I recently read this article and it really hit a nerve. Being diagnosed with one of the top 'it's your fault' cancers, I have been labeled repeatedly as the cause of my own cancer. I can tell you the first time it happened. It was over seven years ago, but I remember it clearly. I walked into the nuclear medicine department of my local hospital and was asked to lay down on an uncomfortable sort-of padded table and wedge myself under a giant slab of plastic coated metal. Then a medical professional of some sort came in and made small talk as my shoulder was prepped to be injected with radioactive toxins.

Medical Professional: So you have melanoma?

Me: Yeah.

MP: Wow. You're so young... [This line also got old really fast]

Me: Yeah...

MP: So you tanned?

It was more of an assumption than a question. So, you tanned. And as the words reverberated in the silence of my shock, it began to feel more like an accusation than an assumption. Then she stuck me with needles and told me not to move for two hours, but not before I felt I had to tell her the whole awful story of my diagnosis. 

That day I left cramped, sore, and sure of two things: 1. If my cancer had spread, it would be under my arm, not in my neck, and 2. I would be judged because of the type of cancer I got. 

Cancer shaming isn't limited to melanoma. Lung cancer survivors are also judged, as are survivors of reproductive cancers, especially since the link between HPV and cervical cancer has been widely broadcast; did you get cancer because you were promiscuous? In a society focused on health and wellness, even cancers not traditionally linked to specific behaviors are attributed to the patient's lifestyle choices; consumption of processed foods, failure to exercise, being chronically stressed, all become fair game for others to question and judge the cancerous. 

Let me break down for you what happens when cancer shaming occurs. For the person with cancer, prying questions about choices and behavior only foster guilt and call into question the role the survivor may have played in their own illness. For the asker, there is more to gain. If the patient did engage in 'cancer causing' behavior, while the asker did not, it reassures the asker that they are immune to cancer (and confirms for the patient that their cancer is obviously their fault). If the patient did not engage in cancer causing behavior, these questions lead to frustration, anger, and shame, as well as feeling the need to explain the cancer. 

Maybe after reading this you're thinking to yourself that I must have caused my cancer to be writing about cancer shaming and how much I hate it. You're dying to ask, but now feel like you can't...But did you tan? Did you wear sunscreen?

I'll give you two answers. The first is my gut response to cancer shaming questions. Does it matter? Will you have less empathy if you know I chose a path that led to cancer? Should I accept my fate because I brought this on myself?

My second answer is this: No. I didn't tan, and yes, I wore sunscreen. I'm telling you this much because I want you to know that anyone can get melanoma, and you should go see a dermatologist, even if you take precautions. I'll fight back the urge to tell you the whole story of how someone who doesn't tan and wears sunscreen ends up with advanced melanoma. Because despite what cancer shaming has conditioned me to believe, I don't owe anyone an explanation of how or why I got cancer. 

How Much is Your Life Worth?

I recently got a quote for life insurance. I have been married for all of two months and my husband's car died. Before we made our first big married purchase, I called our insurance company to get a quote for our new ride. At the end of the call, the girl asked if I wanted a complementary quote on life insurance. I was home alone and didn't have anything better to do than answer a host of personal questions, so I said yes. 

What followed was a twenty-minute game of 'Who Engages in More Risky Activities-You or Your Husband?' I was winning. I got points for never having smoked anything ever, not traveling out of the country for business, and skipping bungee jumping. I called it a tie on things like family history of diabetes, cholesterol levels, and maintaining a healthy weight. Then right at the end she dropped the bomb- personal history of cancer? I knew it had to be coming, but it was literally the LAST question she asked. And with that, I lost the game. 

I was informed that insuring me would cost three times as much as insuring my husband. I wasn't happy about this, so I answered even more questions that required me to pull out my pink binder with the Stupid Cancer sticker on the cover. From my medical binder, I gave the woman on the phone exact information on the size and depth of my cancer, as well as treatment history, so that she could call back and give me a more accurate quote. I was sure the premium would go down. It had to. I did chemo. I've been cancer free for over seven years. 

I got a twenty-second slap in the face the next day when the insurance company called back to inform me that the quote I received wasn't accurate. Turns out I'm uninsurable. At any cost. I promptly sent a snarky text to my husband letting him know the good news that I am worth far more alive than I am dead. Then I thought about what this meant. According to some mathematical risk analysis formula, it is so probable that I will die young(ish) that this company wouldn't even take me on. I am a liability. I made a point of not thinking too hard about this, though; I have come to terms with my own mortality. Cancer will help you do that. I have thought I was dying enough times that I have an advance directive, and I have put a great deal of thought into the legacy I would like to leave. Everyone dies. It doesn't scare me. 

I thought my fear of being uninsurable was over once healthcare reform became a reality, but I hadn't even considered life insurance. Who my age does? As frustrated as I am about this, I am trying not to let it get me down. For all the unexpected (and unwanted) 'gifts' that cancer has given me (surprise- your thyroid doesn't work anymore!) There are many more gifts that I am grateful for. I have traveled the country, met amazing people, shared my story, created artwork, found my inner athlete. I have perspective and priorities. My life took a sharp left turn it wouldn't have taken without cancer, and I am eternally grateful for the change in course, because without cancer, I wouldn't be who I am- Someone whose life's value can't be summed up with a mathematical formula. 

Hope. Love. Run.

The Great Teacher

I hold a bachelors degree in elementary education. I graduated Suma Cum Laude and received an award for my near perfect score on the exam required to be an elementary school teacher. I also completed the coursework and passed the exam to teach art. Before I secured my first job, I started working toward a certificate in special education. I now have a masters in special education and I currently work under an additional state-issued certificate for something called an LDTC (you can look that one up, it's too complicated to explain what I do on any given day in this job).  I am currently considering a second masters in an educational leadership field.  I am twenty-eight years old and since I turned three, I have never really stopped going to school. Before I am an educator, I am a learner.

When I was an undergraduate student studying elementary education and fine art, I decided that I would never teach art. This is why I never actually bothered to pay for the certificate even though I took the classes and passed the test. Why? From the time I was ten years old, I knew what I wanted to be when I grew up. I had no idea what I wanted to do, but I knew I wanted to be someone who positively impacted others; I wanted to be the person about which people looked back on years later and said, "She changed my life. I am better because of her." At ten years old I just didn't know what I would do to become this person. A few years later I decided teaching is what would do. With all the wisdom of a college student, I was certain art teachers were not the kind of people who had a lifelong lasting impact on their students, so I would pursue a career as an elementary school teacher.

Part of being a lifelong learner is repeatedly finding that things you believed to be true are actually quite wrong. I have also come to embrace the idea that the first step to becoming knowledgeable about anything is accepting that you just don't know what you don't know. Only when you accept this can you actually begin to learn.

In my current role, I get to see what's happening in a lot of different classrooms. These visits aren't about the teachers; I observe students. However, I have learned more about great teaching doing this than I ever did watching teachers- a common task assignment for college students studying education. 

What I didn't know in all of my finite college-student wisdom was that being a great teacher isn't about what you teach, it is about how you teach. I am blessed to work with many great educators, and from being in their classrooms and watching their students, these are just a few of the things I have learned.

Great teachers don't know everything, and their students know it.
This comes back to my point about lifelong learners. Great teachers admit when they are wrong. They look up information to answer questions posed by their students and aren't afraid to say "I don't know the answer to that question, but let's find out together." This teaches students that it's okay not to have all the answers. It also teaches them that being curious and asking questions isn't pointless, and that their teacher- a grown-up- cares enough to take the time to answer a question. Fear the teacher who knows everything, because she doesn't know what she doesn't know.

Great teachers cry.
My husband is continually amazed by the frequency with which I come home and report that there have been one (or more) crying episodes in my office. And these are rarely students. Great teachers do not cry out of despair. They cry because they love the twenty-or-so souls for whom they are the keeper for seven hours per day. They love other people's children so much that these children's triumphs warm their hearts and need to be shared, while a child's challenges become personal crusades of improvement. Often this passion is conveyed through hours spent brainstorming about how to reach a single child, the need to share a small victory, and through the corners of the eyes.

Great teachers have great students.
 ...Or at least they want their students to think they do. I have walked into many a classroom where students are told that they are capable, they are authors, athletes, mathematicians, researchers, musicians, artists, or scientists, and they believe it. Great teachers lead their students to believe that they are the best class ever. The smartest, kindest, most amazing class that teacher has ever had. Ever. The funny thing about having a teacher tell her students they're all of these things? They begin to believe it, and gradually they stand a little taller, slowly but surely they grow into all of these things.

Great teachers fill many roles.
Whether they have twenty students, three, or one hundred, great teachers make a difference not because of what they teach, or even who they teach, but because of how they view and interact with their students. A teacher's greatness is reflected  back, and can be seen in the eyes of their students. If ever you ask yourself if you are in the presence of a great teacher, or if you are a great teacher, look no further than your students, because their greatness is because of yours.

Cancer...On My Terms

I decided to give the old blog a face lift, and I decided to change the subtitle from Treatment saved me from cancer, running saved me from treatment. I'm in a very different place in my life than I was when I started Hope, Love, Run, and I decided to change the appearance and subtitle to reflect that. I originally started this blog to understand what cancer did to me, who I was as a result, and to share my story with the hope of having a positive impact on someone- anyone- so that something positive could come out of what devastated my life.

Flash forward a couple years...I essentially walked away from the blog and cancer for a while because I was finally able to embrace my life without the constant opression of cancer and all its aftermath- which was amazing. While I have yet to have a day in which I do not think of cancer, it is often on the periphery; white noise in the background of my gloriously mundane life.

I knew this day would come, but I also knew for a long time that I wasn't ready to do this. With the place I am in my life now, I am finally ready to directly use my experience to give back. Essentially I am choosing to engage with the cancer world, but this time it's my choice and on my own terms.

About a million years ago, several months after I returned from my first trip to Camp Mak-A-Dream, I reached out to one of the long-term survivors I met there following the death of another girl we met at CMAD. It was the first time someone I knew passed as a result of cancer. She was twenty-six. Some of the wisdom of the long-term survivor was this:

...In January I will celebrate 16 years of being cancer free. Every day of these sixteen years, I have thought about cancer. I expect I will be thinking about it for the next sixteen. You have to come to an understanding with cancer. I can't tell you how to do that, or what your understanding will be, but you have to get to that place where you can think about what you've survived, view it like a race you've won, and know you're here so you can be someone else's trainer...

I've reached my understanding with cancer, and through registering with Imerman Angels, I now have the opportunity to be someone else's 'trainer'. While it makes me remember many of the experiences that were painful, it also gives new purpose and value what I once viewed as the single worst thing that ever happened to me. And that? That is beautiful.

Hope, Love, Run,
JCW

A Note about Imerman Angels:

Imerman Angels carefully matches a person touched by cancer with someone who has fought and survived the same type of cancer (a Mentor Angel). Additionally, personalized matches are provided for cancer caregivers (family and friends of fighters) to benefit from other experienced caregivers. These relationships provide hope and comfort from someone who is uniquely familiar with the experience. This personalized matching service is absolutely free and is available to anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.

Imerman Angels is a federally registered 501(c)(3) not-for-profit organization.

Mission

Imerman Angels provides personalized connections that enable 1-on-1 support among cancer fighters, survivors and caregivers.

http://www.imermanangels.org/

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

Undatable?

I recently saw an interesting article on The Huffington Post. A young woman still being treated for cancer shares about her dating experiences and five critical things she tries not to do. She humorously and poignantly explains her situation. I recommend reading it here.

It got me thinking about the type of people who are willing to date someone with cancer. Aisling Carrol, the author of the Huff Post article says one of her five 'dont's' for dating with cancer is waiting too long to tell someone.

I'm pretty sure there is no right time on a date to tell someone you've got cancer. Especially if you like the person. When I finished treatment and was finally even willing to consider the idea of dating, I had no clue how to do it...When should I bring it up? How much should I tell? It all seemed so daunting. Not to mention that cancer (and a pre-treatment relationship that broke up during treatment) left me feeling damaged and undatable. Whether it was suitors or health insurance companies, no one could possibly ever want me. I was broken; a liability.

Luckily, I've lived long enough to learn that none of that is true. I've met a lot of people with cancer, and plenty of them find relationships...I'm one of them.

I think a key characteristic of an individual willing to date someone with cancer is that they have some sort of a connection to the disease. This isn't something hard and fast, but I can think of a fair amount of survivor friends who are with someone whose family has been affected by cancer. Maybe it's the familiarity that makes it less frightening. I also think there's a compassion that comes from knowing someone who has had cancer.

After a string of dates for the sake of dating, where I worked toward carefully disclosing my diagnosis; building rules to determine when and what to disclose, it turned out it was all for nothing. One winter night, I met with a guy at my favorite dive bar. I broke all my rules and cancer just sort of came up. Seriously. It just happened.

And like that, he knew. When we said goodnight, I was pretty sure I'd blown it and wouldn't hear from him again. It was a shame. He was cool. But really? Who tells someone they have cancer on the first date?!

But then he called. He kept calling. And texting. And wanting to see me. Once I got past the idea that there had to be something wrong with him for wanting to date me, I started to think that maybe it was possible to be uninsurable, and still be datable. More than three years later, I fully believe it.

It takes a special person to love a young adult cancer survivor, to get into a relationship knowing that your partner's body has been occupied by enemy cells who could potentially come back, and all the other crappy things that come along with being lucky enough to survive.

But the most important thing to know if you live to date again is that these people exist. And they aren't crazy. They're compassionate, understanding, loyal, and open to
the idea of dating you based on who you are, not what your prognosis is. Be yourself, cancer and all, and you might be surprised what- and who- you find.

Hope, Love, Run,
Marathon Girl

Shameless

Unless you've been living under a rock for the last eleven days, you've probably noticed that just about everything is suddenly a shade of pink; the front page of a newspaper, the lights shining on the White House, the cleats NFL players are wearing, t-shirts for sale at Walmart, chocolates, cereal, everything from yogurt lids to prescription caps. If no one's told you already, it's October. Which means it's National Breast Cancer Awareness Month.

October comes but once a year, so everyone is trying to get in on a piece of the pink action while they can. All in the name of cancer awareness. What a wonderful thing. How generous; companies, supporting a worthy cause....Or is it?

In October of 2006, I was in the throws of the most intense phase of my treatment. I did not have breast cancer. I lay on the couch most days and each day in October, The View told the story of an amazing breast cancer survivor and Ford gave a car to each of them. I liked the stories, but in between the show segments, there was an inordinate amount of Ford 'Warriors in Pink' commercials begging viewers to purchase a scarf, hat, or shirt to support 'the cause'. I couldn't place what bothered me so much about this...Was it the fact that one specific cancer was getting so much press while I suffered with another? Perhaps. But there was more to it. Something felt sneaky about these 'awareness' ads. Were they raising breast cancer awareness, or brand awareness? What did Ford get for giving cars to cancer survivors? Were they exploiting survivors to gain consumer approval?

I'm not the first person to notice this. Just last night one of my survivor friends posted this in response to the breast cancer movie event 'Five' featured on the Lifetime channel: "Kill me. I just watched that vomitous Lifetime movie "Five"...It was a gross exploitation and sponsored by Ford and Walgreens. Ooo, they make all of their prescription caps pink during the month of October. Frickin fantastic. Woop de do."

I watched the movie, and while I found the stories moving, the use of Ford and Walgreens' names and merchandise not only during commercial breaks but actually in- yes, in the movie was over the top.

Google "Breast Cancer Awareness Month Exploitation" and you can learn more about this.

One article states:
"Corporations push breast cancer in October because it works to sell more products. Women worry that some day they will face breast cancer or already know someone who has. They want to help. And what way is better than to buy something that promises to do good? The reality is that very little of the amount women spend on the pink products wind up at charitable institutions. An ABC News Report from last October pointed out that Campbell's donated a whopping 3.5 cents for every can of soup it sold. To raise a mere $36 to fight breast cancer from the Yoplait campaign, a person needs to eat three cups of yogurt a day for four months."

You can even find criticisms on the Wikipedia page for 'National Breast Cancer Awareness Month':
"The breast cancer advocacy organization, Breast Cancer Action, has said repeatedly in newsletters and other information sources that October has become a public relations campaign that avoids discussion of the causes and prevention of breast cancer and instead focuses on “awareness” as a way to encourage women to get their mammograms. The term pinkwashing has been used by Breast Cancer Action to describe the actions of companies which manufacture and use chemicals which show a link with breast cancer and at the same time publicly support charities focused on curing the disease. Other criticisms center on the marketing of "pink products" and tie ins, citing that more money is spent marketing these campaigns than is donated to the cause." Remember when Susan G. Komen briefly partnered with KFC and had pink buckets- filled with carcinogen laden chicken? Um. Yeah.

Another article details the misuse of the pink ribbon logo:

"Daily Finance, the AOL finance resource center, sought to find out how many of these pink products actually benefit breast cancer. Procter & Gamble’s pink-packaged Swiffer sweeper told buyers that, “Early detection saves lives,” but what does that have to do with donating money? Eventually, it was found out that the company donates a mere two cents to breast cancer research only if the buyer uses a coupon from the Procter & Gamble brand coupon book.

This is a perfect example of how Breast Cancer Awareness Month is being exploited by large companies looking to make a profit. This overuse of the pink ribbon logo stems from the fact that no one owns the image. Also, no one has the right to control its usage. This means that any company anywhere can put a pink ribbon on the packaging to persuade buyers to purchase their product."

My parting words of warning are this: Think before you pink. Want to show a survivor in your life that you care? Leave that pink spatula you don't really need on the shelf. Donate your five dollars instead to one of the reputable charities out there (To find one, check out CharityNavigator).

Hope, Love, Run,

Marathon Girl

Happy Livestrong Day!

In 31 minutes, Livestrong Day officially starts. It also happens to be my sister's birthday, so happy birthday, #1!

While I celebrate my cancerversary (the date I was diagnosed with cancer) each year, Lance Armstrong has taken it to a whole different level. He has an entire country celebrating the day as not only the day he became a survivor, but also as a day of awareness, remembrance, and honor for those who have been affected by cancer.

I'm a long-time fan of the Lance Armstrong Foundation's resources and awareness campaigns. They've also made an effort to support the young adult community through their partnership with the Ulman Cancer Fund (which supports young adults). They also produced notebooks and binders that made it possible for cancer survivors to create a detailed record of their treatment history. However, I am more than excited about the newest LAF initiative that's arrived locally. It's called Livestrong at the Y.

I heard about it for the first time at the triathlon. There was a table with information about it, so I went over to see what the deal was. The representative explained to me that they were starting a small group exercise/wellness program for cancer survivors that would meet at the Y a few times a week.

My first reaction: Awesome...But about four years too late.

I was seriously looking for this program when I finished treatment in September 2007. Unfortunately, it didn't exist then, but thankfully, it does now. Since I've returned to the gym after the tri, there has been a table set up in the entryway of the YMCA advertising the program, and I spoke to the coordinator last week. She let me know that the next session begins (the first to be offered on evenings and weekends) and put my name on her list of participants. I can't wait to start!

In the meantime, this LAF and YMCA partnership is bringing together two of my favorite things...the gym and all things Livestrong. When I went to the gym today, I found a paper chain of encouraging statements to cancer survivors strung along the main hallway. beyond the Livestrong table in the entryway, the gym featured Livestrong banners with inspirational statements, and on each of the kiosks on the strength circuit machines was a tiny sign that reminded patrons to wear yellow if they visited the gym tomorrow, on Livestrong Day.

The whole thing feels kind of like a party honoring cancer survivors...and what could be better than a party at one of my favorite places- the gym! On my way out, I signed up to come back tomorrow and bike for an hour, and you can bet I'll be wearing a bright yellow shirt...maybe even with my bright yellow shorts. I also took a minute to write on one of the narrow slips of yellow paper that were being used to extend the chain. I wrote one of my favorite statements, which comes from this 1 minute Nike video from the 2008 Olympics (Click).

I hope you'll wear yellow on Sunday, October 2nd in honor of Livestrong Day...because it's not just Lance's cancerversary, it's honoring all cancer survivors who keep on living strong.

Hope, Love, Run,
Marathon Girl

Killing Ink Cartridges and Trees

I did something crazy the other night. I stood next to my desk and fed innumerable sheets of paper into my printer. I put in a chunk about half an inch thick, the maximum amount my printer can handle. Then I did it again. And again. And again. Finally it stopped. When I flipped over the mass of pages the words that stared back at me were these: NO WORDS

Way back in May (I had to check to find that out- I could have sworn it was June or July) I wrote a post titled Write it Out. That post was a promise to myself to go back into the stories I'd written in the years before and finish my cancer memoir. Despite a busy summer full of tutoring and trips, I did find some time to revisit all those word documents. I picked up where I left off and I tried my best to fill the gap between the end of treatment and when I finally felt whole again. I thought about it a lot and I decided that point was when I stopped keeping my cancer a secret, which happened when I won the Lilly Oncology on Canvas competition a year ago.

I'm still ambivalent about what I want to do with this hundred-plus page document, but a request was made for a copy to read, so I printed it. I intended to pack it up in a big envelope and mail it away, but it's been sitting on my desk for almost a week and I kind of want to read it myself.

After I finally do read it, I'll address it to someone who met me in the middle of treatment. I say I am sending it to her because she asked, but I don't think I'd let just anyone read it. She is the fourth grade teacher I was randomly assigned to work with during my last semester of college. She was my student-teaching mentor and I can only imagine what she thought when I told her the first time I met her that I not only had cancer but was planning on student teaching while doing chemo. But she welcomed me into her classroom, taught me a lot, and along the way we forged a relationship that went beyond professional duty and have met for three hour catch-up lunches each summer since we worked together.

So when she asked to read it at our most recent lunch, I knew I had to print it out. Eventually I'll send it to her, and I hope she approves.

Hope, Love, Run,
-Marathon girl

Du-ing the Tri

The triathlon was yesterday, and I'm happy to report that I have fully recovered...Just to prove it, I ran six miles this afternoon. Triathlon weekend officially began the end of last week, with a trip to The Sneaker Factory. I rented a wetsuit from them since the water temperatures for Sunday were predicted to be cold. It's been raining for the last two weeks- my town flooded; The Raritan River spread into parking lots, streets, yards, and homes, and after receding, the river angrily rose again a week later.

I'd never swam in a wetsuit, so my first stop after picking it up was my parents' house. They have a large pond in the backyard, so with the reservoirs closed for the season, I figured it was the only place I could get a feel for swimming in cold, open water in a wetsuit. I am SO glad I did it. Wearing a wetsuit alleviated any concerns I had about drowning. The suit made me so buoyant there was no way I could drown; I could barely keep my head underwater. However, I also felt like I couldn't breathe in the suit. After swimming a few laps, I found myself gasping and rolling onto my back. Freaking. Out. Once I calmed myself down, I was able to swim in the murky water for twenty minutes without stopping, the amount of time it would take me to complete the half-mile swim. Mission accomplished.

Friday and Saturday were rest days, which was difficult, since I hadn't taken two consecutive days off in about two months-I was restless. I repeatedly checked the weather and it looked like I might actually get a day without rain. Then, on Saturday afternoon, the email came. The race officials determined that the water in the reservoir was unsafe for swimming. Apparently the relentless rains caused nasty runoff to enter the reservoir and the bacteria levels were dangerously high. So just like that, my triathlon became a duathlon. The race would now be a 1.5 K run, 14 mile bike, and 5K run. I had mixed feelings about this; relief, but also disappointment. I trained so hard. I wanted to prove I could do the swim.

Nonetheless, I nervously packed my bag on Saturday night, checking it, then checking it again to be sure I had everything, sans swimming gear. I mentally ran the race; the short run, transitioning to my bike gear, riding over Jugtown Mountain, correct passing form, transitioning again, and running with the lead feet that come from riding fourteen miles over a legit mountain. And finally, crossing the finish line. The best part.

I slept in short stints, I would wake from riding, running, swimming, and check the clock to see if it was six o'clock yet. When I woke at 5:55, I got up.

An hour later, I was closing the trunk of my car, my bike laid out inside, the backseat down. The race location was just a few minutes from my house, so I got there with plenty of time to get my numbers, set up my transition area, had my body marked, and meet up with my 'support team'

I usually travel light to races- generally it's just me and one other person. No one is ever cheering for me on the course, and I'm okay with that. I imagine my name is on every poster. I read 'You can do it, Jessica!' as 'You can do it, Juli!' It's not quite the same, but I have a good imagination. But I didn't have to pretend this time. I had a cheering section of half a dozen, posters and all. Not to mention that they followed me from finish lines to transition areas, and back again. All the while waving those posters. With MY name on them. I loved it!

The runs were pretty easy. and the biking was also smooth. I was glad I rode the course a few weeks ago and knew what to expect. The mountain is a beast, but I didn't get off my bike, and even passed a few riders on the steepest section. When I returned to the transition area after biking, I was tired, but I prepared for this. My legs were not nearly as heavy as they'd been on previous runs that followed biking. Again, I passed people.

When I finally crossed the finish line, my cheering section yelling my name and waving their posters, I felt that familiar rush of accomplishing something. Another milestone. While it wasn't a true triathlon, I had never participated in a bike race before, and I have a feeling this was not my last. Obviously I need to train for another triathlon, too, since I haven't had a competitive swimming experience yet. There is so much more I need to do.

When I tell people I do these things- run long distances, train for months, they often ask why. But I think the real question is why not? The last few weeks of training, I had a phrase stuck in my head, as I've written happens to me sometimes. This time it was "What doesn't kill you makes you stronger." As I raced yesterday, I thought about this again- for an hour and forty-one minutes (and eight tenths of a second). What I concluded is that this statement isn't true. What doesn't kill you, well, doesn't kill you. That's it. I am not stronger because I had cancer. I cannot do the things I do because I survived. I made a choice, a promise to myself. I choose every day to push my limits and see what I can do; longer, harder, faster...Stronger.
I think it's time to stop asking yourself why. The real question is, why not?

Hope, Love, Run,
Marathon Girl

The People Who Make You

It's been a while. I apologize, but I've been busy living the last few days of precious summer vacation to their fullest.

Amidst runs, bike rides, swims, hurricanes, and earthquakes, I made time to visit some people who are very important to me. My Nani and Pop in Florida, and my medical team. My weekend trip to Florida to visit the grandparents was sandwiched between seeing my medical oncologist and my dermatologist. All three were good visits.

I've encountered many amazing people who I would never have met if I hadn't gotten cancer. Among these are the ones who get paid to inspect, poke, prod, and stick me. If your lucky, these people do more than what their job requires, they get to know you, care, and view you as more than a thick manila folder filled with facts. I've been very, very lucky to meet many of these people. They've become part of my life, some staying longer than others, but all shaping me into who I am now.

When I went to see my oncologist, who I've seen on a daily, weekly, monthly, and now biannual basis, he did his usual exam, and the entire time discussed with me what my plans were for the coming school year. And when he was done feeling for lymph nodes, we continued to talk, about his son, daughter, and vacation. I recently had a parallel conversation with an old friend; the only difference was that we were in a restaurant.

Then there's the dermatologist. I. Love. Him. Aside from the fact that he saved my life, he calls the next day to check in and see how I'm doing if he removes something for testing, he sent me flowers on my first cancerversary, knows my entire family on a first-name basis (and has examined all of us) and perhaps made an extremely generous gesture on my most recent cancerversary. He does way more than look at my skin.

But these people aren't the only individuals I've come across who go beyond what is required; when I developed lymphedema the first time, an physical therapist who was not covered by my insurance gave me free treatment until I was able to see someone who was covered. She gave hundreds of dollars worth of supplies I needed to treat the condition, and didn't bill me for any of it.

Then there was the nutritionist who I went to see when I regained an appetite and thirst upon beginning treatment for my failing thyroid. I didn't know how much to eat since I hadn't been hungry in so long. She saw me twice, and took my credit card information. She told me she'd send the bill. It never came.

Then there was the cancerversary party. I threw a rather large party for my five-year cancerversary this June. I knew I wanted to do this for months, so I priced venues, saved my money, put down a deposit, and invited my twenty closest friends and family...and two doctors who have always done more than their jobs. Unfortunately, the docs weren't able to come, but the rest of us had a great time- appetizers, drinks, dinner, and a very special cancerversary cake later, I went to pay the remaining balance for the party. The manager gave me a blank piece of paper. Then he explained that I owed nothing. Someone, who wanted to remain anonymous, wanted to do this for me. I tried not to cry as I explained that I wanted to know who it was, because I needed to thank them for this. The manager still wouldn't tell me, but I have my suspicions about who the mystery beneficiary was.

There are people who do their jobs, and there are people who go above and beyond. These people inspire me, because they don't just do, they do more, sometimes for nothing. These encounters have given me an appreciation for the kindness of strangers- and strangers who become part of an extended family I never thought I'd have. These people have made me who I am through their kindness and genuine caring. They inspire me, because without them, I would not be who I am...or possibly here at all.

Hope, Love, Run
Marathon Girl