Sunday, September 22, 2013

CancerGirl Goes to Cancer Camp

During my summer vacation, I went to sleep-away camp. I left my familiar palm trees, fog, and hipsters of the Bay Area for the mountains, thunderstorms, and cowboys of Colorado. Each day, I woke hoping that I was up earlier than my cabin mate so I could get a few moments in the bathroom before the morning’s activities. Each night, I went to bed, hair smelling of campfire, exhausted from a day well spent in the wilderness. The entire experience was exciting, challenging, and, ultimately, made me feel as though I were thirteen. In fact, I’m thirty-four and teach thirteen-year-olds. And, my camp experience wasn’t a traditional coming-of-age, independence-testing kid’s camp, but an all-expenses-paid, week-long outdoor adventure for cancer survivors.

I heard about this “camp” from a young survivor email thread that I signed up for when I went to my first and only support group meeting two years ago. At the time, I was going through radiation therapy for stage II breast cancer and just couldn’t listen to other cancer patients bemoan the horrible pain they suffered years after their own radiation therapy or the cancer that one woman ended up developing after her treatments. Support groups are wonderful if patients can glean a sense of community and shared experience. I ended up feeling scared and depressed. The email about camp sparked my interest because it wasn’t just sitting around and lamenting our diagnoses and treatments, it was actually getting out and doing things I’d never done before. And, let’s be honest, a free vacation. If I could get a week in Colorado from having cancer, why wouldn’t I go for it? A few weeks before I got the email about camp, my boyfriend, with whom I was living, broke up with me. The relationship had been passionate but difficult. When it finally imploded, he kept saying that he just couldn’t deal with the fact that I was a cancer patient--the medical bills, tests, and the chance, though very slight, of recurrence. The last few days of the relationship he just kept repeating it as though it were his mantra. “I just can’t deal with the cancer. I just can’t deal with it.” The information about camp caught me at a time when I needed to be around people who would accept that this was a part of my reality, people that weren’t scared of it, that didn’t look at me as damaged.

Originally, it was about being somewhere that I fit in. It eventually evolved into a symbol of doing something new and bold, reclaiming independence and happiness after cancer and the end of a negative, draining relationship. So, I sent in my application, my doctor sent in my medical application, and, a couple months later, I was accepted. When I would tell friends about my upcoming trip, I mentioned that I was especially excited to go horseback riding and, if I came away from Colorado with a cowboy, I’d be okay with that, too.

The night before the flight, I felt a little apprehensive about not knowing exactly what I was in for and who was going. The people that run the camp like to keep things fairly mysterious. They give you a list of what clothing and accessories (hat, gloves, bug spray) to bring and keep you in the dark about pretty much everything else (lodging, location). The only thing I knew about the other campers were their email addresses. So, I decided to reach out to them. I sent out a group email introducing myself and telling people what I’d be wearing and, if they saw me waiting at the gate, to come up and say hi. The next morning, I arrived at SFO at dawn and anxiously looked around at everyone waiting to board the flight to Denver. Every person traveling alone prompted me to question if they were a camper too. And, as a single woman, I secretly hoped one of them would be a cute, young single survivor.

The first camper who approached me was an older woman wearing a scarf on her head and a warm smile. She sweetly thanked me for my email and introduced herself. During the two and a half hour flight, I came to learn that she has had metastatic endometrial cancer for the last eleven years and has received chemotherapy treatment for much of that time. In our time at camp, we never used our real names. We all had nicknames. Hers was Lucky.

Four other campers found me at the airport and all were at least twenty years older than me. Now, I understand that cancer survivors are typically older than I am, but I couldn’t help being disappointed that there weren’t any younger people. When we landed in Denver, we met up with our “counselors” who were easily recognizable dressed in full kayaking gear. Once all eleven of us--eight women, three men--gathered together, I realized that even though I was still the “baby” of the group, there were a couple survivors only ten to fifteen years older. We all tried to make quick introductions as we made our way to the luggage carousel. Okay, I thought, now who is going to be my best friend at camp. The night before I had visions of finding a young woman with similar experiences to mine who would be my camp buddy, and we would stay up late talking about our love lives and the other campers. In reality, I didn’t have any kindred soul sister moment. When I found out that one of the survivors, nicknamed Peaches, was taking the same medication that I have been taking for the past two years, I jokingly called us the Tamoxifen Twins. She just flashed me an awkward, forced smile. Okay, I thought, this one’s not going to be my camp bestie. So, the search continued, and I felt as if I were a new student trying to make friends on the first day of school. It soon became clear that the San Francisco survivors lived up to the city itself. There were many unique characters including a tattooed seventy-five-year-old woman who finished chemo years ago but continues to shave her head and told everyone to call her Veedub.

After we got our luggage, we made our way to the converted short school bus, which turned out to be our chariot for the week. I sat by myself for the three and a half hour ride, chatting with other friendly campers at lunch, but not yet feeling like I met my kindred spirit.

When we arrived at camp, the volunteers and river guides were waiting for us, ready to show us to our cabins and introduce themselves. They all had nicknames too and didn’t accept any of our real names. I soon became known as Annie Oakley because I said I wanted to get my cowgirl on (to me, the water activities were secondary). A frantic brainstorming session of nicknames ensued. I ended up turning to the man on my left, a forty-something first-grade teacher who just finished treatment for metastatic colon cancer, who was having a hard time coming up with a nickname. Inspired by his mohawk, I suggested Hawkeye. He turned to me, flashed a broad smile, and said he liked it. And, right there, became my camp bestie. Being that many of my closest friends are gay men, it seemed fitting that we would find each other. And, even though we didn’t get to room together, we still talked about our love lives and the other campers, and he ended up being the best wingman a cowgirl could ask for.

Across the lawn from the main ranch house was a row of adorable one- and two-room log cabins, each with its own bathroom, and outfitted with bunk beds, framed paintings of horses and cowboys, and a wood stove. It was love at first sight. If someone were to ask me to describe the perfect little sleep-away camp cabin, I couldn’t make it as perfect as these were. And quickly, my cabin mate was assigned, Peaches, my Tamoxifen Twin. Oh well, I thought, if nothing else, we can bond over our side effects.

That night, we went to the main ranch house for dinner and started to get into the routine of communal meals and the nightly campfire. Everyone involved in the camp made it feel like a family. All the river guides worked for MasterChief’s river adventure sports company and the rest of the volunteers knew the founders of the camp well. It’s amazing how quickly you can reach out and make meaningful connections with people when in a new environment where you don’t know anyone. Trust is given and taken freely, and making yourself vulnerable to the group somehow seems safe. When everyone has been through an experience as devastating as cancer, it makes it easier to open up. I look very healthy, so, usually, people looked shocked when I tell them I am a cancer patient. There was no shock at camp, only recognition. No matter what your cancer, you share that bond.

The beginning of the week was filled with building our kayaking skills, or, in my case, getting some. We practiced our “wet exits” that involve flipping over in your kayak, hugging the kayak with your upper body, pulling the strap so that you can release your skirt, pushing yourself out of your kayak, and swimming to the surface. For me, this was a fairly terrifying, claustrophobia-inducing proposition. And, though they encouraged us to practice our “wet exits” until we felt so comfortable that it became fun, I did one very embarrassingly fumbly wet exit and vowed to do all in my power to stay upright for the week.

I could spend hours writing about the scary nature of learning how to paddle while tackling rapids or watching the elation on other survivors’ faces as they became confident that they could ride a horse or enjoy the river. And, during our last campfire, I lied and said my favorite moment of the week was the sense of accomplishment that I experienced when I realized that I could adequately steer my kayak through four-foot waves. And, with the exception of one afternoon of succumbing to trepidation and using a “ducky” (an inflatable kayak), I conquered the class II rapids with my river kayak and did indeed stay upright.

However, ultimately, my favorite moments didn’t involve facing danger and living to tell about it or riding Little Joe, a beautiful, spirited horse, with whom I made friends and rode. It was getting to spend time with one of the guides who is also a cancer survivor. His nickname wasn’t Cowboy, but that’s what I’ll call him because that’s how I think of him.

We talked a little bit during the first dinner on the Sunday night when we arrived. He’s a country boy, born and raised in a small Colorado town, who is getting his Ph.D. in engineering and working these camps on the side. He was diagnosed with an aggressive form of lymphoma when he was sixteen and fought through many debilitating treatments to regain his health. We bonded over being young survivors, talked about our reactions to our diagnoses and the side effects from our treatments. He lamented that once when he parked in a handicapped spot during the worst of his treatments, he was reprimanded by an irate woman yelling at him about taking the spot from someone who needed it. He then removed his baseball cap, showed her his bald head, and told her he was weak from chemo and that’s why he was allowed to park in that spot. Then, I lamented to him that when I was at my weakest during radiation, could barely walk, and had to drive with two feet on the gas pedal, I didn’t have a handicapped sticker and had to park in the “healthy people” spots. Our relationship quickly progressed from talking about cancer to talking about my attempts at writing fiction, his doctoral work, and our families.

And, the Cowboy wasn’t just easy to talk to, he was fun. For me, the best part about being a cancer survivor is my renewed ability to find joy in the most ordinary of circumstances. If I have limited time here, I want to laugh as much as possible. We teased, flirted, and trash-talked each other through a camp tournament of Cornhole. When we had free time, we would somehow find each other like magnets. By Wednesday, I felt it--a heart-thumping, stomach-flipping crush. He tried to resist because, after all, he was a counselor and counselor-camper fraternizing was inappropriate, but, towards the end of the week, it became clear he had a crush, too. Thursday night, we went to dinner in Colorado Springs and afterwards swam at a hot springs. On the hour-long bus ride back to the ranch, he sat next to each camper and asked them about their day. When he got to me, strategically positioned in the last seat, we immediately snuggled up together and whispered to each other how much we liked being together. It was sweet, innocent, exciting--I felt like I was a middle schooler, holding a boy’s hand for the first time. In order to give us more time together, Hawkeye seated in front of me pretended to be asleep, so Cowboy didn’t feel obligated to move from my seat. I told you he was a good wingman.

That night, we waited up in the main ranch house exchanging small talk and gazing into each others' eyes until everyone went to bed, and then I tried for a kiss on the cheek. He shot me down, pointing out the security cameras and telling me that he didn’t want to lose his job. Then, he said a quick good night and went to bed. I was never more upset about a lost kiss.

On our last night, I dressed for dinner in my finest cowgirl ensemble complete with boots, belt buckle, and bandana. And, in what was my actual favorite moment of the week, he walked into the ranch dressed as my cowboy--Stetson hat, perfectly fitting jeans, the biggest belt buckle you’ve ever seen, and a pair of white snake-skin cowboy boots. I said I wanted a cowboy before I left for camp, and there was the most perfect one I could imagine. We ended up sitting together at the campfire that night and touching fingertips behind my blanket--the culmination of my sweet camp romance. When it was time to leave camp, we hugged several times, and then he was gone. And, feeling bittersweet, I went home. It got me thinking about my students at their own sleep-away camps.

People always think that being a cancer patient is one of the most devastating things that a person can go through, and it’s true. It’s challenging in every way possible--spiritually, physically, and emotionally. And I’ve always said that thirteen is the most awkward, painful time in a person’s life--your body changes, your mind changes, your friends change, everything is changing and in the most awkward, embarrassing way possible. But, being in the middle of the turmoil, these kids possess a sweet hope that one way or another they will turn out to be okay, and that somewhere in this life of chaos and disappointments, challenges and regrets, that someone will also think you are okay. My camp experience taught me that cancer survivors and thirteen-year-olds share a common bond: both are caught up in a storm, one being puberty, the other illness. They both have to actively look for moments of joy and, when they find them, truly appreciate and live in them. The biggest difference between the two is that the thirteen-year-old feels that life is infinite and the cancer survivor has an intimate relationship with their own mortality. But, maybe feeling as though you can live forever and living as if today was your last day aren’t all that different. Both a sense of immortality and mortality can inspire a person to take risks, to look for adventure, to kayak down the Colorado, or to hold hands around a campfire.

Monday, July 30, 2012

Avon Walk SF 2012

Here are some pics from the Avon Walk SF. Thanks to everyone's support, I raised over $4200 for breast cancer research and assistance for the uninsured and underinsured in the Bay Area. It was a challenging, wonderful experience.

Wednesday, June 27, 2012

Living together

For the past two weeks, I've been anxious. The fear doesn't take the overtly obvious form of panic attacks or depression; it's more of a feeling of constant soul discomfort. A nagging feeling of anxiety that reminds me of the "mean reds" from Breakfast at Tiffany's. After describing the blues as "just being sad," Holly goes on to explain pensively that the mean reds are when "suddenly you're afraid, but you don't know what you're afraid of." However, in my case, this isn't completely true. I knew exactly what I was afraid of.

Last week, I had my first MRI since beginning my cancer treatments. I think any cancer patient would agree with me that the yearly check-ups to detect if the cancer has returned are absolutely terrifying. Anyone other than a cancer patient, I've found, is confused by my terror. "Do you feel sick, is that why you're upset?" "Are you stressed because you found a lump?" The answer to both is no, but most people don't fully emotionally comprehend that the results of that test could determine whether I can live my life normally or if I have to face more treatment which, the second time around, is even more debilitating. The fear of what destructive forces could once again be hiding in my body made it increasingly more difficult to breathe.

In another one of my favorite movies, the quiet and beautiful Elegy, Penelope Cruz's character is a young woman who finds out she has breast cancer. She describes the experience of having cancer as being "trapped" inside herself. Before I heard that the lump in my breast was cancerous, I didn't fully understand that description. But after my diagnosis, "trapped" was exactly how I felt. From the second I found the lump, my relationship with my body started to change. In fact, before I found the lump, I didn't even realize that I had a relationship with my body; we were one and the same. Having cancer made me very aware that I am a separate entity from my body, but it also made me realize how inextricably trapped I am within it.

Two weeks before I found the lump in my breast, I moved from San Francisco to Walnut Creek. Mostly, this decision was made out of necessity. The commute from my apartment in the city to my school in the suburbs cost not only my time (about a fifty minutes each way) but money. Between the gas bills, wear on my car, and bridge tolls, I was spending hundreds each month to sit in traffic. As a part of this life change, I renewed a pledge to myself, one that I made a few years before but had long since taken a backseat to daily stressors. The pledge was that I would try to be the healthiest--physically, mentally, spiritually--I could be, each and every day. Ironically, only fourteen days later, I found the tumor.

My body felt like a stranger. I've been betrayed by loved ones a few times before, but the betrayal by your own body is the most basic, visceral type of pain. My reaction was one of overwhelming panic. I felt like the captain of a sinking ship. "This one's not working anymore! Get me out!" The feeling of desperately wanting to live while your body seems to be trying to kill you is one that I won't soon forget. I don't know if I believe in a soul, but a part of me--my mind, my spirit--felt completely detached from its shell. I had wild visions of this spirit jumping into another body like a hermit crab switching homes. Cancer, I believe, is a particularly hard disease to reconcile for young, seemingly healthy people because it's not a virus that invades your body and attacks your cells. It is your cells that are mutating and your immune system that can't kill them. Because of this, it feels like your body is committing suicide without seeking your opinion. Faced with the MRI, this feeling, diminished by months of feeling healthy again, came back and knocked the wind out of me.

Slowly, over the course of this past year, my attitude towards my body has evolved into a "we're in this together and better make the best of it" sentiment. In this life, we are subject not only to random accidents, contagious disease, and dumb luck affecting our health but, also, the sometimes surprisingly separate, rebellious world of our own bodies. And like any relationship, even if you treat them right, at times, they can turn against you.

During the last two weeks, I've also been packing and getting ready to move in with my boyfriend. Strangely, these two events seem to mirror each other. Both are life-changing and character-testing. Any lingering feelings of holding back, not trusting him completely because of past heartaches, must make way for the hope and risk of giving my heart and life openly and freely to this man. Just as my heart, also, has to give trust and hope back to my body.

My philosophy for both is simple. Try my best to make them happy and healthy. Always be kind and recognize what is beautifully unique about them. Trust that just as I give them the best of me, they will give me their best. And, always be grateful and feel lucky for the precious time I have with them.

In case you were wondering, the MRI was clear of any sign of malignancy--thankfully, I am still cancer-free. Whew! :)

Wednesday, January 25, 2012

I'm Good!

Today will go down as the first day since I was diagnosed that I could honestly answer "good" when asked how I was doing. I didn't, in fact, answer "good" because I'm so used to saying "okay" that it comes out of my mouth without me thinking about it. I actually had a moment after I answered okay when I thought, "No, wait a minute, I'm good!" And can't wait to answer great!

Monday, January 23, 2012

These boots were made for walking!

I've decided to participate in the 2012 Avon Walk for Breast Cancer in San Francisco on July 7 & 8, my birthday! Please click on the link that I've posted to access my personal fundraising page about the Avon Walk and what it means to me. I have to raise $1800 to simply participate and would love to raise more! I would greatly appreciate any donation. CancerGirl's going to walk 39.3 miles for a cure and quality care for everyone, regardless of insurance and income. Please support me! :)

Friday, December 23, 2011

A Boob of a Different Color

When I first found out that I would need either a full or partial mastectomy (also called a lumpectomy), I went online. And this is my advice if you have breast cancer (or even if you don't) - NEVER, EVER search Google images for the phrases "mastectomy scars" and/or "breast reconstruction." Yikes! After seeing women's chests displaying giant red slash scars with no nipples, I became terrified. My surgeon, however, was amazing, and it ended up that my partial mastectomy went very well, and my breast looks very similar to how it looked before.
Six weeks later, when it came time to begin radiation therapy, I turned to Google images once again. I know, I know. But it turns out that I could only find one picture of a radiation burn on someone being treated for breast cancer. I'm not sure why that is, maybe people are just shy because the side effects from radiation aren't that pretty, but I'm a person that thinks it's helpful to see the worst so that I can prepare for it.
A few years ago, my friend went through radiation treatment and I saw his burns. His neck ended up looking bright red, something akin to a severe sunburn. But his situation and mine were different. I was told before treatment that places where the skin folds or stretches regularly are more prone to blistering and skin breaks. Also, having to wear a bra over irritated skin can cause pain.
In any case, I was curious, so I've decided to post a few pictures showing my skin while it was peeling and at its peak burn period. It's kind of gross, but it's not as horrific as I once thought it might be. Also, I wanted to show that it was manageable because of my frequent moisturizing and pleading with it. Each day for the last couple weeks, I'd apply my radiation cream and say aloud, "Please don't bleed. Please don't bleed. PLEASE don't bleed."
The first side effect that really threw me was the peeling. It doesn't peel like a sunburn; instead, the skin comes off all at once. One evening three weeks into treatment, I was rubbing moisturizer onto my chest, and when I pulled my fingers away I had a white paste of skin all over my hand. It shed copious amounts of white flakes over me and the shirt I was wearing. It was definitely scary. But it only happened a few times and didn't hurt. The burns, however, eventually did hurt and, also, in a different way than a typical sunburn. The skin on my side under my arm was the worst and that is displayed in the third picture. I once described my pain as "my side feels like it was hit with a blowtorch, the fold under my breast feels like it's covered in poison ivy, and my nipple feels like I put it in a pencil sharpener." That was only accurate for a short time, though. Also, the red in the pictures doesn't really do justice to the hot pink to bright red to dark brown colors of my changing skin. It was definitely a boob of a different color. Each day, I woke up to an altered, yet equally vivid hue. One side of me looked perfectly normal and the other bizarre. You've heard of the Batman villain Two-Face, right? Well, I was Two-Boob, his radioactive sister.
The superficial side effects end up going away slowly as the skin renews; two weeks after treatment, I still have a tan and my skin is peeling. The harder side effect is the internal pain, which may stay for a little longer or be permanent. That feels like occasional rolling shock waves through my chest, but that's manageable as well. It's chronic but not constant. My only permanent external scars will be my three little freckle-like tattoos: one in the middle of my chest and one on each side of my body (shown in the last picture). And I'm actually kind of fond of them.