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.