It Happened to Me: I Was Diagnosed with Ovarian Cancer at 22

Surgical menopause, friends running scared, and chemo nurses in Haz-Mat suits can only be faced with laughter and a positive attitude.

Sep 7, 2012 at 2:00pm | Leave a comment

Not much more than a year ago, at age 22, I had my first-ever OB/GYN appointment, and now I’m in menopause. I’ve got no ovaries and no fallopian tubes -- just the fan I always carry with me, in case of hot flashes.

You might wonder why my first women’s wellness exam was so late. To be honest, I’m still a virgin and I figured that as long as I wasn’t sexually active, I didn’t need to have a speculum in my vagina. I could tell you my sad 22-and-never-been-kissed story, but that’s for my therapist to deal with. Anyway, I don’t mind being a virgin –- that’s my own decision. But now I’m a sterile virgin with cancer, which wasn’t my choice.

Last summer after a month of intense pain on my right side, pain so bad that pain relievers didn’t help, I went to the doctor. They did an ultrasound – not just the normal abdominal one, but the trans-vaginal one. Lucky me! Let’s just say that blue conductive gel is not what I was expecting to see after that experience. 

The ultrasound revealed masses on my ovaries, one of them the size of a grapefruit. I was scheduled for surgery, hoping that the doctor could simply remove the five, seven, and 15-centimeter masses that had grown on my ovaries, but the cancer had other ideas. My ovaries and fallopian tubes were removed, leaving my uterus all dressed up with nowhere to go -- or at least, no more menstrual cycles to deal with. They told me I could still carry a baby someday, though. If I ever have an embryo implanted, my uterus will be ready -- as long as the cobwebs haven’t gotten too bad. All I need is a donor. 

I quickly forgot about that after seeing my belly stapled together with 50-plus staples and being unable to laugh, cough or move because of the pain. 

After surgery, I was diagnosed with ovarian cancer, stage 3C out of a possible four. Most cases of ovarian cancer are found at stage 3C, because there’s no screening test for it –- no Pap smear, no mammogram, no nothing. I had to be cut open for my doctor to find it. 

Along with the shock of the diagnosis, I had to figure out how to tell my friends. Tearfully, I made my way through my contact list. All of them were initially stunned, but as they adjusted to the news, their responses varied. 

One of them looked at my cancer as an exciting adventure, a challenge. She told me I needed to come up with a list of things I wanted to do during treatment. Most of my friends needed some reassurance before coming around with a “You can beat this” attitude, but the last friend was the hardest. I spent the entire conversation comforting her, telling her everything was going to be fine. To this day, I haven’t gotten a single “You can do it” from her -- she’s gotten really good at avoiding me. 

I never would have thought I would be the one encouraging my friends –- I thought that was their job. Aren’t they supposed to check up on me and be there for me? Instead, I found myself worrying about how they were dealing with the news, wanting to be there for them. 

After surgery and breaking the news of my diagnosis, I got ready for “the plan of attack” -- a clinical trial of a new type of chemotherapy. I moved back into my parents’ house so they could take care of me, and I got a port -- a quarter-sized well connected to a catheter that goes into a vein. It’s an intimidating device that has become my best friend. I call my port “Portica,” and thanks to her, I don’t have to get IVs every time I need a treatment or a blood draw -- a weekly occurrence. 

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First day of chemo, with Portica and Komfort the Koala.

I’m sure you’ve heard about the horrible side effects of chemo. If you’re like me, you envision turning into Susan Sarandon from "Stepmom." But thanks to medical advances, isn’t necessarily like that. I quickly got to know the routine. You take your pre-meds and then you head to chemo, feeling foggy and ready for a nap. When the nurses hook the chemo bag up to the pump, they wear gloves and gowns to protect them from the medicine they’re injecting into your bloodstream. It sounds really scary, but it isn’t. If anything, it’s really boring –- the perfect time to take a nap. 

I don’t know if I paid the right person or what, but I got lucky and didn’t have too many chemo side effects. I was nauseous and had heartburn, but I didn’t vomit even once, and I didn’t lose my hair, even though everyone said I would. I think it was thanks to the song my sister sang my hair follicles. 

For my family and me, something so life-changing could only be faced with laughter and a positive attitude. My sister and I came up with songs for Ovarian Cancer: The Musical -– my favorite is “Blame It (on the Chemo Brain)” to the tune of “Blame It (On the Alcohol)”: Blame it on the ch-ch-ch-ch-chemo brain . . .

Songs weren’t the only thing. I also had my chemo bunny slippers, my boyfriend IVan (the IV pole), and my chemo buddy Komfort the Koala. At Christmas, IVan was festively decorated, and when my dad suggested I find something to do with my collection of hospital bracelets, I got crafty and wove them into coasters. 

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Making chemo festive for the holidays.

The number one thing that happens once you get cancer is that you start getting gifts -- mostly hats, scarves and blankets. I have yet to use a single blanket I’ve been given. It’s a shame, really. I love snuggling down under a pile of blankets on a cold winter day. When I’m at the infusion center, they always ask if I want a warm blanket. I think I said yes twice out if the 20-plus times I’ve been there -- all because of hot flashes.

Yep, hot flashes. When my ovaries were removed, I was thrown into menopause. According to WebMD, “Surgical menopause occurs when a premenopausal woman has her ovaries surgically removed in a procedure called a bilateral oophorectomy. This causes an abrupt menopause, with women often experiencing more severe menopausal symptoms than if they were to experience menopause naturally.”

I don’t know if my symptoms are more severe, but they sure are annoying. 

I get hot flashes every day, multiple times a day. Fans are my friends. I need a fan blowing when I sleep, when I’m in my car, and pretty much everywhere I go. I’m sure people think I look like an idiot, but all I am is hot, even when everyone else is cold. As a post-op present, my mom jokingly got me a battery-operated fan, and another friend gave me a fold-up fan after noticing one of my Facebook status updates about hot flashes. 

My mom and I get in debates about how long I’ll suffer. She’s done with menopause and can’t remember much about “the change,” but it doesn’t bother her now. Talking to her is helpful, until it comes to talk of it going away. I don’t think it will ever go away for me. Because of the cancer, I can’t do hormone replacement therapy, and as long as my body is lacking those reproductive hormones, I get to hot flash with the best of them. 

Except for the hot flashes, crying for no reason, weight gain and being at risk of osteoporosis and heart disease, menopause really isn’t so bad. In time, I will get the hang of these dips and peaks in mood and temperature, and maybe one day I won’t even notice them. Until then, I will be the 23-year-old ovarian cancer survivor carrying her fan with her everywhere. No need to offer me a blanket, thanks very much.  

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Ready for surgery, bitches.

I joke that I’ve become an old lady, having a type of cancer that affects mostly post-menopausal women. The friends I make now are mostly middle-aged, because people my age can’t handle this. Most of them have just finished with school and are excited to start their adult lives. Having a friend with cancer scares the shit out of them. To them, cancer equals death. They don’t realize that the more support I get, the stronger I feel and the harder I can fight this disease.

One year after my diagnosis and eight months after completing my course of chemotherapy, I’m back at college this fall –- working on my new normal.

Jennifer Mason documents her cancer journey at http://photosofthejourney.tumblr.com/ and tweets about life @jennipenni3d.