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.
