Pink: The color of opportunity

I told myself I would remove the pink silicone bracelet when my sister was cured.
Then she died two months ago and I didn’t know what to do.
I couldn’t take it off.
I couldn’t bear the sight of it.
I nearly kicked down the display of pink I saw in the grocery store only a week after her death, more than a month before the kickoff of Breast Cancer Awareness Month. I wanted it gone. Pink made me angry.
A symbol of false hope.
A cash-cow for certain companies that dupe buyers into believing they are donating to the cause.
A month when simply wearing a color makes people feel like they’ve done something when they’ve done nothing at all.
All the pink in the world couldn’t save my sister.
Pink was a constant reminder of what I’d lost, what her children and husband had lost, what my siblings and her friends had lost, and it was unbearable.
Until last week.
I was at the grocery store again, the same grocery store with the premature display. The clerk was ringing up my groceries when she asked me about the bracelet. I told her about my sister, Kathy Riley. She offered condolences.
“That’s why,” she said, “I never skip a mammogram.”
For a moment, I was furious. How dare she assume my sister didn’t heed the same advice? Our mother is a survivor. Our grandmother died of breast cancer. We were vigilant, my three sisters and I. My sister’s breast cancer was detected a month after her mammogram. Her then 2-year-old son leaned against her breast and it hurt. She checked and felt a lump.
Then, through my anger, I glimpsed opportunity.
I told her my sister’s story and stressed the importance of monthly self-checks. I explained that mammograms can miss cancer in people with dense tissue and that further, more sensitive tests, can sometimes be necessary.
She expressed surprise that anyone could be diagnosed so soon after a mammogram and admitted she never did self-checks. She would from then on, she promised, and suddenly, pink didn’t make me so angry anymore.
I am still bothered by the commercialization of Breast Cancer Awareness Month and by those people who seem to revel in the color itself rather than in the meaning behind it. But I am no longer torn when I look at my bracelet.
Pink started that conversation, and who knows? Maybe the insight she gained through our talk will someday save a life. Maybe she’ll find a lump early enough for a cure, or maybe she’ll tell a friend who will tell a friend, and the conversation will keep going, moving others to do self-checks regularly.
So that’s what I ask this month of anyone who reads this.
Don’t just wear pink.
Wear it with a purpose.
Wear it as a reminder, as motivation to educate, as a conversation starter. Buy it from companies that donate to research, education or support. Wear while you send a note to someone who is battling the disease or make a meal for a cancer patient or participate in a fundraiser.
It doesn’t have to be bold and brilliant.
It can be small and subtle.
Sometimes, it’s the little things that catch people’s attention.
Little things like the bracelet on my wrist.

Earn the Pink: A Breast Cancer Awareness Month Challenge

I find myself dreading October 1, the day the world turns pink.

The month-long campaign for breast cancer research and education is an astounding success in terms of raising awareness and money. That I will admit. But it has become an event. A celebration. Pink, pink pink.
Everywhere I look, I see pink.
It’s hard to witness when my sister is on her third battle with breast cancer, which has now invaded most every part of body. Cancer will be her constant companion. She will spend the rest of her life beating it back whenever it threatens to establish primary residency.
I cringe at the constant reminders.
I wish I could turn off the lights for just one month so I wouldn’t have to see it.
 The pink.
But I can’t do that. I have to experience this month, regardless.
So I started thinking about what I can do to ease the stress, what all of us can do.
How about this?
Instead of posting ribbons to our Facebook profiles, crying over survivor stories and wearing pink t-shirts, sneakers and hats, why don’t we do something about it? Do something to help save ourselves, our relatives and our friends?
Why don’t we each make a positive change and become an example?
It doesn’t have to be a huge change. It can be as small as doing a few crunches in the morning to tighten those abs, or switching out a morning bagel for a bowl of oatmeal, or promising to start each day with one positive thought.
It’s that easy.
Those are the little things that can make a big difference. They can make us healthier – less likely to become victims, and stronger in battle should it break through our defenses. These are changes we can talk about with others, encouraging them to follow our leads.
Post it on Facebook, chat about it in the office, tweet it.
We don’t know what caused my sister’s cancer.
She’s always taken good care of herself. I suspect environment played a role. She lives in Southern Jersey in an area where cancer rates are unusually high. But even as she holds her head to stop the pounding, or clenches her stomach to ease the nausea, she’s trying harder. She’s working to improve her way of living – her diet, her attitude and her fitness.
She is fighting with everything she can.
So go ahead and cheer her on with pink flags, pom-poms and ribbons.
We all want to know someone is thinking of us, and I’m certain that helps.
But jump in and fight, too. Prepare for battle and arm yourselves well. Don’t let breast cancer have it easy. Wear the pink glow that comes with a brisk walk, or after a good night’s sleep or when you look in the mirror and tell yourself life is good.
Make pink the color of your battle uniform, not just your décor.

A new friend. a new inspiration: fighting inflammatory breast cancer

I had dinner last night with a woman who, according to all the statistics, should have been getting her meal through an IV at a Hospice center.
Instead, she was scooping up cheese and beef with tortilla chips from a platter shared with a friend at Cheeseburger in Paradise.
Ashley has inflammatory breast cancer, the deadliest of breast cancers and among the most deadly of all cancers.
She was diagnosed in May and, by then, it was already in her lungs, bones and liver.
She is married and has two children, a 3-year-old and a 7-year-old.
About the same time she was diagnosed, I’d had a scare.
A red circle, following the pattern of my veins on my breast, appeared out of nowhere.
My OB said that if it progressed any further at all, even the tiniest bit, he was sending me to an oncologist because it wasn’t an infection and the only explanation he could find was inflammatory breast cancer.
The redness diminished with the help of Motrin and disappeared, thank God.
But in that short time, I’d done enough research to be scared when I met Ashely last night.
No.
Terrified.
I’d learned that IBC generally appears as discoloration (red, pink, orange or general darkness) or irritation on the skin of the breast; spots that are warm top the touch; thickness of breast skin with an orange-peel-like texture; swelling of one breast; or nipple retraction. Sometimes, it’s painful, but not always.
Most women simply figure it will go away.
By the time they see a doctor, it’s too late.
“Stage doesn’t matter with inflammatory breast cancer,” Ashely said.
And it’s true.
The disease spreads like wildfire. By the time symptoms appear, the cancer has spread so far that chances of survival are slim. About 40 percent of women with IBC survive five years, according to The American Cancer Society. That compares with 87 percent for all breast cancers combined.
Yet there she was.
Ashley.
Scooping cheese and beef with tortilla chips.
Laughing with friends, new and old.
Saved, so far, by research and awareness.
Ashely just finished round five of chemo. She has been drained of estrogen because this type of cancer feeds on it. She takes a drug that rebuilds her bone tissues as chemo destroys it. She will have her uterus and ovaries removed in a few weeks as a preventative measure.
A recent scan showed no discernible spots in her lungs. The masses in her liver and breasts had shrunk. They couldn’t see the bone tissue because of the drug, but the doctors believe chemo is working on that too.
She’s had a new scan on Wednesday and was still waiting for those results.
Ashley is living, and she is improving.
Against the odds.
October is Breast Cancer Awareness Month.
Ashely and another friend, my neighbor Kristy, persuaded me to demand an MRI instead of a mammogram this next time around because of my extensive family history of breast cancer (My grandmother died of it and my mother and sister are survivors) and because of the fact that, so far, I’ve had two scares.
After meeting Ashley, I’ve decided I will do that.
Like I said, October is Breast Cancer Awareness Month.
But why wait.
Even just a few days.
I am going to take charge.
Now.
How about you?

Still Alice

I had always thought that, should I ever develop cancer, I would forgo chemotherapy. Chemotherapy is poisonous and barbaric, I believed. It brings us to the brink of death and then drags us back and, some folks never do return.
I’d rather take my chances on clinical trials and new treatments, I thought. And I firmly believed that these decisions should be made while we are healthy, when our minds are not clouded by the subjectivity and irrational passion that comes with disease.
Then I read Still Alice, a first novel by Lisa Genova.
Now, Alice does not have cancer. She has early-onset Alzheimer’s Disease. But, like me, the healthier, rational Alice believes that she knows what is best for the Alice to come. She creates a quiz for herself that she takes daily, thanks to the reminder technology on her Blackberry. If she can’t answer all the questions correctly, she is directed to a file that will instruct her to take a lethal dose of sleeping pills.
I won’t go into the rest of the story because I don’t want to ruin it for anyone. But I will say that the novel has altered my perspective on terminal disease. The author, Lisa Genova, has a PhD in neuroscience and works with Alzheimer’s patients. She clearly knows her subject and almost seems to crawl into the Alzheimer’s mind.
Her depiction of the progression of Alzheimer’s is, admittedly, a bit too rosy at times.
Alice isn’t anything like my husband’s grandmother (Well, she wasn’t really his grandmother. She was his step-grandmother and, also, his aunt by marriage, but I won’t go into that here.). Alice doesn’t confuse real life with soap operas and accuse her husband of cheating on her.
She isn’t like my good friend’s aunt, whom he found strapped to her bed in a nursing home when he visited. He was told that she had lashed out violently and that they had no choice, but to restrain her.
But the author’s decision to leave out the nasty stuff doesn’t matter.
We do have an Alice in our neighborhood who lives with her son. She is sweet, kind and completely unaware of her surroundings. Alices do exist. All cases are different and the author doesn’t have to rely on the worst-case scenarios to get her point across.
And her point is more universal for me than it is, I think, for most.
Sure, she deepened my understanding of Alzheimer’s disease with her well-informed fictionalization. She helped me understand that we are more than our memories and that no disease can change our souls.
But, for me, the lesson was broader.
Through Alice, I came to see that I cannot make rational, informed decisions for myself before I face the possibility of death or terminal disease. I don’t know enough yet. I am ignorant, just as Alice was ignorant in the earliest stage of her own disease.
I am ignorant because disease is more than science.
Treatment is about more than medical cures.
And living is about more than being physically or mentally whole.
I am ignorant, but am happy to embrace that ignorance.
Thanks to Alice.