Blogging her way through cancer
April 29, 2011
Jennifer Wilson
YOURHOME.CA EDITOR
Attitude and humour may not be common words in the cancer lexicon, but Alicia Merchant’s got both in spades.
After seven years in remission, Merchant’s going through her second round of cancer and blogging about at alittlebitworse.wordpress.com. And she’s only 30.
The fact she’s so young is a point that has been hammered home to her many times. As she writes on her blog: “I am well aware of this fact, yet it is the one people most like to point out to me. Even medical professionals. Basically, I am a special snowflake.
“A snowflake that had her ovaries, uterus, cervix and appendix taken out, to then have her remaining body parts pumped full of drugs made from metal and trees.”
That full hysterectomy came a month before her 23rd birthday. An abnormal pap test first raised warning flags of irregular cells. Following a wave of tests, Merchant, then a student at Concordia University, went through a round of chemotherapy. She responded well to treatment, and blogged about that experience under the pseudonym Louise Anonymous, calling her cancer the Bomb.
Her new blog title is a play on “Second verse, same as the first”; except for Merchant, it’s “A little bit louder, and a little bit worse.”
In June, during a regular appointment, doctors found a visible recurrence on her CT scan that “threw everybody for a loop.” While she expected it to be similar to the first time — chemo and maybe surgery — she was told there was no standard therapy for low-grade cancers like hers, and thus no treatment options.
A second opinion brought a new treatment plan, a decision to do surgery, and a surprise when the pathology came back as high-grade cancer.
Nearly a year after that routine CT, Merchant is going through chemotherapy and has had two surgeries, including an emergency bowel resection, and a series of stints in and out of hospital for infections.
“I’ve become very well acquainted with emergency rooms,” she says, as she recounts the past few months.
Her writings are part status update, sharing the latest news, and part diary, as she reflects on her own feelings about the experience.
It’s a mix of heartbreaking moments, such as witnessing a couple reacting to bad news or hearing a cancer survivor describing herself as damaged goods, and humour. In one post, she shares a breakdown of a day in the life in chemo, which includes a lot of time in the waiting room:
“8:39: Back in chemo waiting room. Two men are talking about SUVs, ‘Once you’ve driven in an SUV, you can never, ever go back to driving a car because you get used to sitting up so high. Really, you definitely can’t go back to a car. You just have to always drive an SUV after, you can’t go back.’
“8:41: Do not punch SUV man.
“8:57: Check out the reading material of guy next to me. No dust jacket, so I have to be obvious about trying to figure out the title. It’s Tina Fey’s Bossypants.”
Of her reasons for blogging, Merchant says, “I want control over who knows what information and when,” adding it also prevents people from asking sensitive questions when they see her around town.
“Especially in the beginning, when I was newly re-diagnosed. I didn’t want to be the girl crying on the street, at the party, at the bar.” By providing information in a controlled space, she’s able to minimize those situations.
In a sense, being open online is a way for her to take control of her privacy, noting that cancer means everyone is involved in your business. “I’m taking my pants off for people I just met, and not for fun reasons.”
Also, she wants to make sure friends and family are receiving the correct details about her health. “Passing along the information is like playing broken telephone.” She doesn’t want her mother hearing about her latest health problems, triumphs or rumours through the grapevine.
She also hopes that by sharing her story, friends and family will talk about other things with her — things that aren’t related to her health.
“Tell me about something funny you saw on the street, or about the vacation you’re planning. Visit me with props so we can take funny pictures. Draw me a picture of baby animals or send me a postcard in the mail. This is what I want from my friends, this is how you can be useful,” she writes.
“You can’t be depressed all the time. Eventually, you have to do your laundry and return to work. It can get boring to focus on your own misery all the time.
That said, she reserves the right to wallow.
“There’s a real pressure on cancer patients to be positive,” she says. “You don’t ask that of someone with the flu.”
She says it’s important for patients to consider their needs, such as controlling the flow of information, asking for help and knowing when you need to leave the house and when you need to stay in.
She notes support groups can be both a blessing and a curse. It’s an opportunity to meet amazing, supportive people, but also, you’re meeting people who might die. “And not in that abstract way everyone dies . . . Go into a room and you know that there’s no way you will all be alive at the end of the year.”
Some days, facing these kinds of groups and spaces may just be too much, she says, because you need to maintain that “magical thinking” that you’ll be the exception to the rule and the one who survives.
“I wish that I’d had the confidence to be honest with myself, and ask for help,” the first time round, she says.
She offers this advice to other cancer fighters: “Find somebody to be an advocate for you, especially if you can’t do it yourself,” she says, noting she has a friend she counts on. “You’re sick, you’re emotionally depleted. It’s easy to feel really defeated. You need someone to be there, step up for you and take notes.”
Her other essential advice is “don’t get too caught up in the numbers.” When she was diagnosed, she got a giant book and read all the survival rates. But, she notes, you don’t know the ages, relative health and other details that contribute to those numbers. “They don’t apply to an individual.”
Ovarian cancer facts
• The lifetime risk of developing ovarian cancer is 1 in 70.
• A pap smear does not detect ovarian cancer.
• Common warning symptoms include swelling or bloating of the abdomen, pelvic discomfort, back or abdominal pain, fatigue, gas, nausea, indigestion, change in bowel habits, menstrual irregularities, and weight loss or weight gain.
• There’s no reliable early screening test for ovarian cancer.
• Six out of 10 women diagnosed with ovarian cancer are between 50 to 79 years old.
• More than 2,600 Canadian women are diagnosed every year; and 1,750 die from it each year.
Source: Ovarian Cancer Canada