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 Apparently the Brains of the oncology field have decided that the “War on cancer” metaphor is outdated, kind of like how every generation major companies redesign their logos, like when Pepsi changed their font midway through my childhood.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

Crazy, Sexy, Cancer...and then some

Great article in the Times about cancer vixen Kris Carr

Tri, Tri Again

For the last few weeks now, I've been seriously following a new training plan in anticipation of completing the Skylands Triathlon on September eleventh. I actually abandoned the Women's Health plan because I felt it wasn't enough activity compared to what I'm used to these days, so I found a new one created by Hal Higdon. He offers a few different plans and they're specifically for runners who want to try a tri. I'm using his Triathlon 2 program, and so far, so good! I've been doing longer workouts that incorporate two of the three activities I'll be doing for the tri. I especially like the program because it also includes strength training, so I feel like it's a well-balanced plan, which was the one complaint I had about half-marathon training.

I've been absolutely loving cycling, and last night I completed another brick workout (bike, then run) and I felt really good when I was running, which was a big improvement over the last time when my legs felt like, well, bricks. Enjoying running goes without saying. Swimming, however, is another story.

I don't hate swimming, but I don't love it, either. Just like I used to regularly buy new running clothes to motivate myself, I got a sporty new bathing suit last weekend, along with a shiny new pair of goggles. They're making it easier to enjoy the pool, but sadly I will not be completing the swim for the triathlon in the chlorinated aqua paradise offered at the gym. I'll have to run from a sandy beach through shallow water before embarking on a murky half-mile journey in a reservoir. Yuck. So in anticipation of the reservoir swim, I've been making weekly trips to the reservoir where the tri takes place and practicing tracking buoys and staying in a straight line when there isn't a tiled line of black below me for tracking.

I am actually feeling confident in my ability to do well on the cycling and running sections of the tri, however, since the swimming is first, my main goal is simply to not drown so that I can give my all in the other two events. It is humbling to feel the angst of an unknown competition again. I felt this way about both my first 5Ks and half marathons, but it's been a while since I've had a big first like this, and I'm looking forward to the unknown, and seeing what I can do in my first ever competitive swimming experience!...Here's to not drowning!

Hope, Love, Run,
Marathon Girl

'Wen' will my hair look healthy again?

I've written about my hair on here before. Mostly about losing it, and eventually being able to donate it. I haven't really discussed how my hair has changed. Some cancer survivors report that their hair grew back a different color, or they had a major texture change; straight hair that came back super curly, or curly hair that came back bone straight. My experience has been a bit different, probably because I wasn't treated with traditional chemotherapy agents. The drugs I was exposed to interacted with my central nervous system, essentially making it go haywire for twelve months...and beyond. My hair never completely fell out, but it became so thin that I cut it very, very short. Losing your hair is physically painful, and as a girl, it's emotionally excruciating.

It's been four years since I finished treatment, and I'm still waiting for my long, thick, beautiful hair to come back. When my hair grew initially, it was thin and coarse. This might be chemo-related, but I think an aggravating factor was a late-effect of my treatment- a thyroid malfunction that went undiagnosed for a few years. Since I began treatment for the thyroid issues, my hair has progressively gotten thicker. As recently as a few months ago, I began sprouting new hair on the top of my head. When it was an inch or two long, it stood up straight and I had to tame it with an arsenal of products every morning so I didn't look like Alfalfa a la The Little Rascals. It was not cute.

But more frustrating than the thinness is how broken and brittle my hair has been since treatment. My stylist tells me it's 'old' hair. I basically have the hair of someone twice my age. I've switched shampoos and conditioners more times than I can count and I've continually been looking for something to fix my hair.

I think I FINALLY found it. The conversation when I go to the salon usually goes something like this:
Stylist: How much should I take off?
Me: how much is damaged?
Stylist: Um, all of it.
Me: Take the split ends.
Stylist: Sure (Nods, frowns, and pretends this is possible. Takes off a few inches).

But the last time I was in, I heard the usual about how my hair, while gaining thickness, is still like that of a sixty-year-old woman. But then something new...Apparently another client with hair like mine had come in and looked very different. She claimed to have started using something called Wen.

That's right. Wen. Maybe you've seen the infomercials at 3:00 AM. It's endorsed by Chaz Dean, a celebrity stylist. I have a strict rule against buying anything that can be bought in my living room without a computer, but I went home and did my research. The stuff comes with a money-back guarantee, although the reviews of post-purchase support were mediocre at best. The other catch is that to get the stuff at a somewhat reasonable price ($30.00 for a 30-day supply, which I'm confident I can stretch for one-and-a-half to two months) you have to enroll in an automatic monthly delivery and billing schedule. However, I called the customer service line and after a truly short wait, I spoke to a rep who assured me I can put my account on hold and not receive shipments or be billed until I call and authorize it. I think a lot of the people who complained about 'unauthorized billing and shipping' didn't read the fine print.

So the verdict is in. My hair is looking better. I wouldn't say I'm Goldilocks or anything, but for the first time in more than four years, my hair was not a frizzy mess when I left it down and let it dry au naturale. I used the product again today and blew my hair out, and again: significantly less frizz. My hair feels much softer, and while it's not perfect, I feel hopeful that if I keep using it, maybe I can have 'normal' twenty-something hair again.

I don't know Wen, but soon, I hope!

Hope, Love, Run!
Marathon Girl

FD 70: Day 5, The Last Day

The last day on the water at First Descents, we returned to the site of my breakdown Wednesday. It was cold that day. For July, it was freezing. I wore about three layers of clothing underneath my waterproof suit. A few of our guides donned button down collared shirts and ties over their waterproof suits, under their life jackets-after all, it was graduation day for us. Before we got in the water, the rain started coming down, and there was nowhere to hide. Not from the rain and not from what was about to happen. I was going to run the rapids that gave me so much trouble two days before.

Once we were all in the water, I focused my attention on maintaining spacing between myself and the other kayakers in my group. My careful reflection over the past two days led me to the conclusion that I flipped the first time because we were too close together. The one boat I wanted near me was that of Pleaza, the guide who had accompanied me through several rapids after my freak out. Just as much as I wanted to prove to myself that I could do this, I wanted to show him I could do it, too.

I rode out the first several rapids without any trouble, including the first one that got me on Wednesday. I felt empowered when I eddied out after finishing that rapid, and cheers from the safety raft echoed through the canyon as it passed my group. I don't know if they were cheering for me, but it felt like they were.

As we continued, I also conquered the second rapid that swallowed me up. After that, we pulled into an eddy and the guides informed us that we were now going to run graduation rapid. This is the challenge for the day, and normally for first-time FDers, it's just about accepting the challenge and attempting a class III rapid. But for us, it would be more than that. The guides would meet us at the bottom. We would run the rapid on our own, devising a plan as a group of kayakers, choosing our own lines, and running the rapid, not as campers, but as true kayakers.

As we discussed our approach getting through the rapid, which was hidden around a bend and out of sight, I realized this was the rapid I freaked out on. The one I ran latched to Pleaza. I had no memory of the rapid, no idea what features it contained. Luckily, another group member did. Butta confidently described the rapid to me and explained what her approach would be. There were large rocks, water running over them and creating a hole in front- a place you don't want to flip. She said to stay in between the rocks, although it would be difficult because of the bend, the water would suck us to the right. I wasn't completely sure I understood what the rapid would look like, but Butta seemed so sure, I decided to follow her.

What happened next was amazing. I kept my distance but followed Butta. Other boaters took different lines, one flipped, another got sucked into an eddy before the rapid. The water was so loud. I couldn't hear anything over the roar of the river. The water pulled me hard to the right, like Butta said it would, so I fought back as much as I could, but the current moved me quickly toward through the fast water moving over the large rocks. I couldn't get between them, so as I went into the rapid, I owned my line and flew over one of the rocks, splashing into the swirly white water below. I paddled hard and entered an eddy where the other boaters who had just graduated sat. We were all grins and buzzing about our lines. Who boofed the rock? Who actually went between the rocks? Had anyone flipped?

As we sat there, I noticed the mountain goats watching us from the cliffs above, and then realized- the sky had cleared the sun was shining on us. It was perfect.

The next curve brought us to a rocky shore where we stopped for lunch- not sandwiches like usual...The guides grilled us steak on the beach. A true graduation celebration.

The rest of our journey was a breeze- we had run these waters before. We were graduated kayakers. When the guides signaled us to shore, there were already a few out of their boats. The majority of the cars were not there, they were further downstream. As it turned out, our lunch and the wind moved us more slowly through that stretch of water. The cars were a few miles downstream at the alternative take out. As all eleven of us slid into shore, we sat in our boats. None of us got out.

We wanted to keep going. It was almost five, the guides said, and we wouldn't get off the river until 8 if we kept going.
We all looked at each other, continuing to sit in our boats. So what?
The guides continued to get out of their boats. Can't we keep going? We're real kayakers. We don't really need you to go with us, if you want to go back...
After much convincing, we all got out of our boats and the other vehicles arrived to take us back to the ranch.

The rest of the night was a blur of dinner, awards, packing, and savoring the last hours of our week together. At 6:00 AM the next morning, my suitcase was packed. My mind replaying the memories of the week, in awe of the magic that can happen when 11 strangers from across the country come together, sharing on day one just a single common trait: Cancer. But leaving six days later with a myriad of memories, an appreciation for nature, our bodies' ability to conquer the river, and a familial bond that didn't exist just a week before.

If you are a young adult cancer survivor, go on a First Descents trip. It will change your life. Forever. If you're not, support the organization- join Team FD and challenge yourself physically. Better yet, volunteer for a week. See the magic first hand. I promise, you will not be disappointed.

FD 70: Day 4, Kayaks and Bikes

After the on-water debacles of Day 3, Day 4 served the purpose of reinstating my confidence in my abilities as a kayaker. The day began with seal dives into the river, which involves sliding off a ledge, down a rocky incline, and splashing into the current of the river. I was nervous about this, but after watching a few others do it, I also took a seal dive into the water. I didn't flip over, and the day continued just as smoothly. I rode the rapids, read the river with the help of two expert kayakers- Crabs and Pleaza, and by the end of the day I was disappointed when the guides in the front of the group started signalling us to the take-out location.

As we waited on shore for the shuttle to bring the rest of the vehicles to where we were, a rumor circulated about what was in store for us the next day-graduation day. When I heard the news, I think the individual telling me was curious to see my reaction- would I freak out? I didn't. When I heard that we were going back and paddling the same treacherous stretch we did the day before, my reaction was, "Really? Good. I want to do it again. I want to do it right this time!"

Despite how upset I was on Wednesday, I really was looking forward to going back. I'd never actually run a stretch of water more than once, and I liked the idea of having another chance to conquer the rapids that scared the confidence out of me.

The rest of the evening was spent enjoying dinner and sitting around the campfire. We had some unusual guests that night, and I really appreciated talking to them. It was a group of four guys- who called themselves Team Gillette, and a former FDer who you can look up on Facebook under the name Mike-On-A-Bike. All these guys are riding bikes from Portland, Maine to Portland, Oregon. The crazier part is that they didn't set out together, it just happened that the four guys met up with Mike-on-a-Bike and they continued together.

I really enjoyed talking to the guys about their journey and how they came to be riding bikes across the country. I think about them now when I ride, which has been pretty frequent since I returned home. I aspire to do something like that...Maybe next year :)

FD 70: Day 3 (Part II), Alternative Craft (?) Day

After a rough morning on the water...er-in the water- Our little family decided to take a trip into Glacier National Park. I initially didn't understand why we had to be in the car. I wanted to climb the mountain! But after over an hour of driving on windy roads at a shockingly steep grade, I realized why we were in the car. And it became even more clear when our Suburban pulled into the parking lot at Logan Pass and we hopped out of the car. It was freezing up there! The winds gusted loudly, moving the clouds above us faster than I've ever seen clouds move.

Normally mid-week is when FD campers get to experience a more challenging stretch of water on an alternative craft- AKA not a kayak- Examples include the safety raft, inflatable duckies, a sort of cross between an inflatable raft and a kayak, or a topo duo, which is a two-man kayak. However, in light of our awesome skills, we ran that treacherous stretch in our kayaks.

So alternative craft day happened on a glacier at Logan Pass. Pictured is my alternative craft: the snow wing (affectionately nicknamed by its owner Raz as 'Raz's A%! Rocket') We climbed up the glacier behind the visitor's center and took turns sledding down the glacier. It was a long, steep hill, so it made for some exciting sledding. There were some wipe-outs, but everyone had a great time. One of our campers, who grew up in Alabama, even had her first sledding experience on the glacier that day. I initially declined to sled, stating that, "My track record for staying in crafts isn't good today, so I think I'll pass."

But after watching the others, and considering the rare opportunity that sledding in July presented, I decided I couldn't miss out on the chance to participate in glacial sledding, so I did it. There's even video to prove it! You can catch it in this overview of our week: FD 70 Video (My sledding occurs at 0:55)

Overall, Day 3 ended much better than it started. I felt ready for whatever might come on Day 4, and I was excited about the possibilities the rest of the week held.

FD 70: Day 3, Swimming is My Middle Name

Wednesday brought a morning of running and ab work before another yummy breakfast. Afterwards, we all gathered in the living room where a real grizzly bear rug watched us from the wall, as we were schooled on hydrology, the science of water. There was a lot of knowledge thrown at us, and I caught a decent amount of it, but I was feeling tired and I'm not going to lie- curled up in an arm chair beneath my hooded sweatshirt I might have fallen asleep.

Somehow I don't think staying awake for the last few minutes of water school would have prepared me for what was about to happen. When we got to the river, the group gathered to scout a rapid by our put-in. I wasn't too freaked out at that point. I read the water using the terms and information I got in our lesson that morning, and I felt pretty confident when I got into my little lime green kayak.

I made it through that first rapid without anything eventful happening, but as we continued, the group I was boating with got choked up and we all went into the next rapid in a cluster. I found myself swirling and having difficulty keeping control and paddling as my boat bounced off the others around me.

Then I was upside-down. For the first time. In a rapid. It was dark, cold, and eerily silent. But a painfully long second later, my helmeted head burst through the surface and my numb hands were grabbing the metal loop on the back of a white kayak. I was okay.

It was a short trip to an eddy and as my boat was emptied of water, adrenaline pulsed through me, and all I felt was cold. I wasn't scared. It wasn't that bad. I got the swim out of the way, and now I could fearlessly paddle the rest of the river.

As I paddled on, more conscious of spacing now, I enjoyed the tall rock walls and mountainous scenery. What I didn't enjoy was the fact that it was not easy to see what was coming. The river carved a snake-like route, winding sharply to the left, then the right. A few minutes later, as I came into another rapid, I found myself adequately spaced, but I didn't really know where I was going. The water sucked me to the left, and I found myself in a wave train, flying over the top of large white caps, then dipping low, before I was tossed up again.

I'm not sure how it happened, but one moment I was up, and the next the water was on top of me and I was in that dark, frigid, silent place again. When I surfaced, I was disoriented, and faced upstream for a moment before realizing my back was to the current. I turned to face downstream like I was supposed to, and was again towed to shore by a guide. River:2, Marathon Girl: 0.

I was a bit more shaken now, and when the safety raft chauffeured me to where my boat was again being emptied, I wasn't sure I wanted to get out of the raft. Did I really want to get back in the kayak? Not really. At this rate, I'd spend equal parts of the day split between the boat and the forty-degree water.

But when it was truth time, I got back in the boat. I couldn't go in the raft. I wasn't in Montana to sit in a raft. Also, there was a phrase echoing in my head, as I've mentioned happens to me. That day it was Do the thing that scares you. So I did.

As we headed toward the next rapid, I freaked out, though. This wasn't a little freak out. It was a lot. I wanted out, but there aren't a whole lot of options as you go into a rapid, so I screamed "I DON'T WANT TO DO THIS!" I imagined how the next few moments would go, and it involved being cold and wet and possibly stuck in a hole under water. Perhaps drowning.

And then there was the sound of plastic on plastic. Red collided with green and then there were hands. They held onto my boat. Finally, there were words, muffled by rushing water, "Hold on. We'll do it together."

I let out a breath I didn't know I was holding, and we drifted through the rapid together. Pleaza, the kayak guide who grabbed my boat, navigated both of us through the rapid into another eddy. Then I cried. Kayaking scares me. I know I am completely safe. I also am aware that I'm pretty capable when it comes to keeping a boat in a straight line and riding out a rapid. But something happened that day, and I lost it. I got tense, and being loose is a necessity in kayaking. But the worst part was that I lost my confidence. I spent the rest of the day on the water being mad at myself for being afraid, and trying not to cry or look as frustrated as I felt.

When we finally reached the take-out, I was relieved, but also hungry for more. I wanted to prove myself. I was angry and felt unsuccessful, and was equally disappointed in myself for even considering getting in the raft. Looking back, it doesn't seem so bad, but at the time, I was not a happy camper. Luckily, there were still two more days of camp for me to accomplish what I wanted to, and there was a fun on-land afternoon planned so I could take my mind off things.

To be continued...

FD 70: Day 2, Open Water!

After building confidence on day 1, Tuesday brought some new challenges. The day began with yoga at 7:00 AM, and after breakfast, we headed to the river. With us, were two new group members, Grizzly and Boy Toy, a reporter and photographer from a local newspaper: The Flathead Beacon.

There was some confusion about where exactly we were putting our boats in on the river, and after waiting at one put-in for the rest of our group- and unloading the safety raft, it was realized that in fact we were at the take-out. Oops.

Once we arrived at the real put-in, things got off to a good start. After some lunch and an energetic dance warm up on the beach, we hit the water. It was a seven mile trip, and there were few swimmers that day, either a testament to our skill or perhaps that the water wasn't too challenging for our experienced group.

I don't remember a whole lot else about Tuesday, just that it was a good day on the water.

Sidenote: Since returning home, I've resumed triathlon training...I biked 25 miles today- across five townships, hills included. I've also selected the tri I'll be participating in: The Skylands Triathlon, which takes place on September 11th in Hunterdon County New Jersey. This is a plus because I don't actually have to travel to get to the event, it's practically in my backyard :)

FD 70: Day 1, The Lake

After arriving the day before, Monday was the first full day of camp, and our first time on the water in Montana. That morning began just like every other. I awoke to laughter from the kitchen, where the three camp 'moms' were preparing breakfast and packing coolers of lunch and snack supplies for our group of about twenty kayakers and and campers.

After a run and some food, it was time to hit the road. We packed into three vehicles and traveled to Lake Macdonald in Glacier National Park, where the other campers and I needed to demonstrate our ability to 'wet exit'. This means getting out of the boat if it capsizes.

My nerves kicked in as we were given a safety talk and asked to set goals for the week. Suggestions included performing a T-rescue, rolling, or perhaps just getting reacquainted with the water and for today, getting that wet exit out of the way. I made a mental decision that I was in the third group. In the two years since I had been in a kayak, I forgot one critical aspect of my feelings about it: Kayaking terrifies me. Specifically, being upside-down under water and trapped in a boat, or doing anything that could potentially lead to that situation, makes my heart race and my eyes cry. How I forgot this is beyond me. At previous camps, I had not attempted a T-rescue or a roll, and wet exits were specifically reserved for an accidental swim on the river, which I had not encountered during those camps.

As we pushed off the shore, I found myself unable to speak, and apparently my emotions were written all over my face, because Konvict, one of the experienced kayakers, came over and asked me how I was, adding with a smile, "I haven't seen that expression on your face before."
You haven't seen me in a kayak before, I thought.

But in no time, I was sitting in my boat, upside-down, underwater. I tapped on the sides when I wanted to come upright, and Konvict flipped me back over. Once I flipped myself over and did a wet exit, Konvict asked if I wanted to work on rolling. No, I thought. But I nodded yes, and proceeded to spend some quality time underwater. It wasn't that bad...actually, it was fun.

As a group, we practiced strokes and played a game of sharks and minnows before paddling out of the lake to take on some moving water. The water was calm, and that allowed for some quality discussion. I got to know another camper named Johnny that afternoon, and later in the evening, one of the expert kayakers commented at our campfire sharing of highlights of the day that he felt lucky to witness what he saw on the river; how easily we had poured our hearts out to each other after only meeting the day before.

But that openness is part of the magic of First Descents, and something that is not at all unusual at camp.

FD 70

Just over 24 hours ago I returned from Montana. I spent a week there, and it was awesome. I met ten other young adult cancer survivors who had all participated in a previous First Descents experience. Our camp was considered an 'FD 2' because we were all returning participants, although my last time in a kayak was two summers ago. As I mentioned before I left, there is a magic that occurs at First Descents, and at previous camps, this took some time to develop, but knowing that the week would fly, we made quick work of getting acquainted. In no time, nicknames were exchanged and fun commenced.

Side note: Nicknames are an FD tradition, and are the only names used at camp...you can go a whole week without hearing your real name, and it's strange to find out at the end of the week that someone you've been calling Symbol, Marvel, or Half-Baked actually goes by a 'normal' name.

I can't describe in detail what happened at camp, because although the days flew, it also seemed that a week's worth of living happened within each day. So I think that I'll post select pictures and tell a story about each to try to explain what exactly happens at FD, but I'm not sure there are words to accurately describe the experience.

Montana Bound!

I've admittedly slacked off in posting as often as I should, and I do apologize for that. However, my excuse is that it's summer and I've been enjoying every second of it, which includes doing things like riding my bike, running, going to the beach, and competing a few home improvement projects. The past week's agenda included a day at the beach, completing my first true 'brick' workout, painting both my kitchen and a beastly-large hallway that winds up a staircase, riding my bike to the gym (and working out before riding home), running a 5K, and mentally preparing to pack a suitcase for my upcoming trip to Montana. Oh, and I tutored students for about five hours, too.

Writing this makes me feel a lot less lazy. I felt like I didn't do a whole lot this week, but looking back, I guess I did accomplish a decent amount :), and now I can add writing a blog post to the list, too.

I have a lot to do before I go to Montana tomorrow morning, so I'm going to keep this (sort-of) short. Bright and early tomorrow, I'll be going to Glacier National Park to do some whitewater kayaking with First Descents. They're the awesome charity for which I ran my most recent half marathon.

I'm super excited for the whole experience. I've been on two other FD trips, one to Colorado, the other to Washington state. I love the energy of these trips; everyone is so positive, and I can't get enough of the laid back, outdoorsy west-coast attitude of the kayak guides. I also get to meet some new YA cancer survivors, which is equally exciting. There's an unspoken bond that exists between YA survivors. We have common experiences that link us in a way that can't be explained. It's an instant connection that makes it possible to become friends in a day and family within a week. This is one of the things I love about trips like this.

Despite the excitement, I can't help but also reflect on my first trip to Montana. It was a godsend and a nightmare, all rolled into one. It was the dead of winter in 2007, and the first time I met anyone who had cancer and wasn't at least two decades older than me. I've shared selected parts of my memoir on here before, about my hair and also the last piece I wrote. I've written a bit more this summer, trying to actually finish the whole story. Here's the one about my first trip to Montana:

I learned about the existence of a place called Camp Mak-A-Dream from a woman who began attending the cancer support group I'd started to frequent. Her daughter, Jill, was diagnosed at twenty-three, and while her daughter had beaten stage III colon cancer and moved on, she was still dealing with it herself two years later. As a mother to a child about my age, she took comfort in talking to me and seemed to be able to get some perspective on her daughter’s point of view through talking to me, and it was she who told me about the camp in Montana that her daughter had attended.

While Jill wouldn’t talk about the cancer, her mother said she raved about the time she had out in Montana. I waited for months to go to Camp Mak-A-Dream. I knew it would change everything because I would get to meet other young adults who understood what I was going through; I would not be alone anymore. Through all the headaches, my eyes were on the prize of getting on a plane and flying across the country to Montana, to a camp set at the foot of a mountain, where other people far too young to have cancer would come together for a week of fun; skiing, hiking, crafts, and workshops. In all my dreams of how that week might be, I never imagined I would have the experience that I did in Montana.

When I arrived at camp after two long flights and an hour drive from Missoula to Gold Creek, I met my cabin mates, and I felt a sense of panic walking into a central room where there were couches and comfortable chairs, a large mantle and fireplace. It was rustic and inviting, but I wanted to turn around and go back to New Jersey the second I walked in. Other young women sat on the floor, a couch, and in chairs. A few of them wore winter hats, and it was clear that there was no hair beneath them. Why did I want to meet sick people? This was a terrible idea. I want to go back home where everyone around me is healthy and normal. They look like cancer patients.

While I had these thoughts I came in and introduced myself to Courtney, Valerie, Jen, Jackie, Sandra, Jessica, Jane, Bridge, Holly, Sara, Natasha, Becca, and Deanna. I sat down and as I listened to them talk, I realized that even though I was put off by their sickness, I was just as sick as they were. During the next few hours we became friends; it was a sisterhood of cancer. We shared stories, talked about school, boyfriends, health insurance. Within twenty-four hours we were like old friends.

On the third day of camp, I awoke and put on my glasses as I’d done for the majority of my life. But today I couldn’t see clearly. I checked my eyes to see if I had slept in my contacts, and that was causing the problem, but I found my contacts in their case in the cabin bathroom.

At breakfast I told the camp doctor about my vision. He was a Saint Jude pediatric oncologist who had a quirky personality and an overweight beagle by his side constantly. He promised to call Quinny(my doctor) about my sight, and told me to take it easy. As the day went on, my vision deteriorated further; by lunch I was wearing both my contacts and glasses, and still wasn’t able to see clearly.

The doctor checked in, coming and sitting next to me at lunch.

“How are your eyes?”

“I think it’s getting worse. Did you call Doctor Quinn?”

He nodded, “Yes. He thinks, and I agree, that you are having an aura without the migraine.”

I voiced my doubts then, the vision impairment I experienced prior to a migraine were never like this; they were usually similar to what is seen after a camera flash goes off, then the dark spot would grow until I couldn’t see much of anything. But the doctor assured me I would be fine. He suggested I rest after lunch, and I decided I would do this, hoping I would wake up able to see again.

I woke before dinner, the sun had already begun to set and the other girls were in the cabin changing for dinner. Before I opened my eyes, I said a quick prayer that I would be able to see, but when I tried to open them, it seemed my lids were stuck together. I brought my hands to my eyes, planning to rub away the crustiness that was holding them shut. But what my hands found was frightening, I no longer had eyes that rested in sockets; my eyes or lids, or both, were so swollen I had no indentation below my brows; my eyes simply protruded from there. I gasped and began to cry, although no tears came from my monstrous eyes. I was able to open them, but I could see even less than before. I saw blobs of color, and that was all.

“Juli, are you awake?”

The voice came from across the room. It seemed most of the girls had already left for dinner.

I nodded, not sure who was talking to me.

A red and white blob moved toward me and sat down on my bunk.

“Are you going to come to dinner?”

I shrugged, and then started shaking my head, “I can’t see anything!”

“Nothing?” came a surprised response.

I still didn’t know who I was talking to; I couldn’t see her face. Crying without tears I explained, “All I can see are colors. I don’t even know who you are!”

The blob gave me a hug and said, “It’s Jessica, your bunk mate.”

Jessica was a pediatric cancer survivor and was also from New Jersey. She had claimed the bunk above mine.

“Lets go to dinner, I’ll walk you there.”

Jess helped my find my coat and hat, and she guided me to the main lodge, then up the stairs to just outside the dining area.

“Wait here, Jules,” Jessica instructed, then left me in the shadows of the hallway.

She was gone for what seemed like too long, so I came in and found an empty chair at one of the round tables. I took off my coat and feeling the girls looking at me said, “I can’t see anything.”

Val came up behind me, and I only knew it was her because of the southern lilt of her voice, “Juli, do you want me to get you some dinner?”

“Sure. I’m not really hungry though. What is it tonight?”

Val explained the menu and brought me my requests on a small plate.

As we finished dinner, the doctor came over and asked how I was feeling. The decision was made that I would go to Missoula to the nearest emergency room. Apparently having hugely swollen eyes and suddenly going blind was grounds for making the long drive to Missoula late at night.

I spent the next few days traveling back and forth to Missoula, where I saw an ER doctor, then an ophthalmologist, who couldn’t figure out what was wrong with me. Convinced this was somehow related to the preventative migraine medication I was taking, I stopped taking the drug on the second day I was blind. I continued to tell the doctor I thought that the blindness was related to the migraine medication, but he never commented on that. I also called my mother on that second day, deciding I was calm enough now that I could tell her that her daughter who was on the other side of the country was blind. I also asked her to Google ‘blindness and Topamax’, which she did. Glaucoma came up as a rare but listed side effect of the drug.

Once I stopped taking the migraine medication, my vision gradually returned and my eyes deflated over the next few days. By the time I went home, I could see again. When I had regained my sight, the girls told me they didn’t want to scare me, but I had looked awful. They described my eyes as golf ball-like and looking too dry, while my irises were watery and slimy. We joked about it, and they nicknamed me Glaucoma Girl. I thank God that I didn’t go blind while I was at home; I would have been terrified. It was different in Montana, we had all been through difficult times, and we laughed as we went through them, so it was only natural that we laughed at my blindness, and never let on that it was frightening until it was over.