Friday, December 12, 2014


While I was looking for some Christmas labels a few days ago, I found a picture of my mom I'd taken a while back. My parents had come to visit me in Philly where I was living and working as a photographer for an area newspaper in the summer of 1990. I'd graduated from college about two years before. My graduation year was the same one in which my mom was diagnosed with breast cancer.

That day in my apartment, my parents didn't really do anything special. My dad sat on one end of my tiny sofa and read the newspaper for much of the afternoon. My mom chatted about stuff that I can't even remember now. At some point, we grabbed a bite, but although I don't remember if we went out or ordered in, I do remember taking pictures of the two of them with my ever-present camera. I mostly shot black and white then and processed my own film and printed my negatives in my bathroom/darkroom. The picture above is one of the ones I shot. Another from the impromptu photo session was used for her funeral program.

My mom was only 49 when she died. In this photo, she was the same age that I am now - 47. It's hard to believe that I have lived almost half my life without her in it. Even harder to realize I am almost the age she was when she passed away.

I had turned 25 only a few months before she died. The thoughts of a 25-yr-old single woman still sorting out career stuff and life in general are very different than the thoughts of a 40-something married woman with children. My life at 47 is very different from what hers was at 47, but very similar, too, in many ways. For example, both of us are moms who worry about our kids, even though they are adults. We both love our partners with all our hearts and so much appreciate traveling this life path with them by our sides. Both fiercely loyal to family and friends, we feel very deeply for and with those we care about, which can be both a blessing and a curse. And of course, there's breast cancer.

I'm not sure if she did, but I think about my mortality a lot since I finished active treatment. Did my mom at 47 hear the loud ticking of the clock, reminding her that time is fleeting and there may not be as much of it left as she thought? Did she ponder all the places she'd never seen and the things she never did and wonder if she'd get to do them some day? Did she make plans for the 50th birthday that she never got to see?

I do. And I'm kind of sorry that I never even thought to ask her any of that.

Time is fleeting for all of us as life really can turn on a dime. But nearing the threshold of an age my mother never got to see is both humbling and terrifying. My living model of life at 30, 35, 40, after a cancer diagnosis and at 49 isn't here to show me what life at 50, 60, 70 and beyond will look like from the outside.

So I'm not sure if 49 will be a happy or a sad time for me. I had a big birthday party for my 40th, but I'm not so sure if one for 50 is something I want to do. Such a strange feeling, it really is.

Oddly, I feel so much insight about this life stage, if that makes sense. It's kinda strange - and beautiful at the same time. I can't explain it any better than that.

But first, there's 48 - and the continued celebration of my 10-year cancerversary to get through. Onward...

Friday, October 3, 2014

Young Women and BC

I originally wrote this piece for my magazine, Tri-County Woman, back in 2005 while I was still dealing with reconstruction issues and the like. But while nine years have clicked off the calendar, not much has changed statistically with BC - and since it is once again BC Awareness month (which always makes me laugh; who the heck isn't aware of breast cancer?), it seemed a good time to dust it off and print it again.

This was originally called "The New Face of Breast Cancer," but too many women have died since I first penned that title and so many more are running out of treatment options, so it seemed like a title change was most necessary.


Imagine being told by your doctor that you may have breast cancer.
Now imagine being a recent college graduate in your 20’s, a 30-something mother with children in grade school or a 40-year-old pre-menopausal woman hearing those same words.

Since October is Breast Cancer Awareness month, you’ve probably seen the statistics: according to the American Cancer Society, about 175,000 American women will be diagnosed with breast cancer before the year is done. Most of them will be well into menopause and over the age of 50. Women who haven’t quite reached their fifth decade are sometimes told they are “too young” to get the disease when they notice lumps or other changes in their breasts.
But too young they aren’t. The Young Survival Coalition – an organization that provides treatment and other information to women 40 and under living with breast cancer – says the disease is the leading cause of cancer death for women age 15 to 40. The coalition estimates that there are about 250,000 pre-menopausal women in the United States currently living with the disease. Eleven thousand women under 40 will be newly diagnosed this year alone, and, sadly, about 1,300 of them will die from the disease.

 New York women are far from immune. The state Department of Health estimates that close to 6.5% of the 12,000 women (about 800) who heard the words “You have breast cancer” recently were between 20 and 40 years of age. And according to the state’s cancer registry, an average of 12.2 of every 100,000 women under age 40 were diagnosed with breast cancer in Orange County annually between 1998 and 2002, while Dutchess and Ulster counties averaged 11 and six women respectively during the same period. (The rates are based on fewer than four reported cases per year.)

“I live on Long Island and it seems to be everywhere,” says Jill, a 34-yrear-old stay-at-home mom who was diagnosed with breast cancer earlier this year. “It shocks me that there are so many young women now that are being diagnosed.”

The Mammography Question
Because they can pick up cancerous growths smaller than the head of a pin, mammograms – low-density x-rays of the breast tissue – have been the standard for early detection of breast cancer for the last 40 years. But since the American Cancer Society recommends mammograms begin at age 40, many pre-menopausal women with breast cancer may not even know they have it. While studies show that mammograms are more beneficial to women over 50, they are often not recommended to women under 40 because younger women’s breast tissue is often fibrous (which makes the film hard to read and small tumors difficult to find).

“Mammography is of limited use if the breast tissue is dense,” says Dr. Cecilia M. Brennecke, a radiologist and medical director at Johns Hopkins in Maryland, “but there’s no way to know how dense your breasts are until you’ve had a mammogram.”

Digital mammography, which uses a computer-aided detection program instead of x-ray film, can make it easier to examine dense tissue because the image can be enlarged or highlighted, is an option, but it is more expensive than traditional mammography and some insurance companies simply won’t pay for it. Other diagnostic techniques, such as the 3-D image creating Digital Tomosynthesis, are not yet widely available and only used currently for research purposes.

“I think that’s ridiculous,” says Holly from Kentucky, who was diagnosed at 27. “I understand the problem of trying to detect breast cancer in young women using mammograms, but there has to be some other way. There needs to be some other way.”

Dr. Susan Orel, a radiologist and professor at the University of Pennsylvania’s Medical Center in Philadelphia, says that she routinely recommends mammograms for women with multiple cysts, but many women don’t get the same advice.

“I had been going to the doctor for about three years asking questions and was always told I was fine and I had scar tissue left over from previous recurring [infection],” says Kim from Canada, who was 37 when she was diagnosed with Stage III breast cancer. “I had to insist on a mammogram. I feel angry that it wouldn’t have gone this far if they had checked and found it earlier.”

“The bottom line is that if a woman feels there is something wrong with her breast and the test comes back showing that everything is normal, she needs to take things a step further,” Dr. Brennecke says. “Women, particularly those under age 40 and not having routine screenings, should be very aware of how their breasts feel and if they don’t feel right, they should bring it to their doctor’s attention.”

Different Concerns 
Once breast cancer is diagnosed, breast cancer treatment often includes chemotherapy and/or hormone therapy. Both treatments can affect a young woman’s ability to have children – a worry that older women don’t usually have.

“When I was diagnosed, my husband and I had just begun to start planning for a family,” says Tracy from New Jersey, who was 27 when she found a lump in her breast. She had the lump removed, underwent radiation and was given the anti-estrogen drug, Tamoxifen, to help reduce the risk of recurrence by blocking estrogen reception. But the drug stopped her periods, which put having a baby on hold.

“After a year of Tamoxifen, I decided that it was time. All of my doctors were supportive and gave me the go ahead,” she says. Her son, Zachary, was born in 2002 and Tracy has been cancer-free for five years.

“Hearing ‘You have breast cancer’ is totally shocking, but even more shocking when you are young and thinking you have your whole life in front of you,” Holly adds. “I was not ready to die and I vowed to do all I could to stay alive and fight this wicked disease, but I was disappointed to find that most information on breast cancer was for post-menopausal women [and that] lead me to believe that there was no hope for me.”

For Tasha, a single-mother from Chicago who was 32 when she was diagnosed, the biggest shock came when she realized she might not be able to do what she had been doing for most of her adult life: take care of herself. “My mother has had to move in with me. I never thought my 55-year-old mother would be taking care of me. It should be the other way around,” she says. “I have a young son, a mortgage, a rose garden. Who will be around to take care of my son, my house and my roses if I don’t make it?”

Affected and Effected 
Treatment, while tough on the body, can also be tough emotionally – to both the patient as well as her loved ones.
Although her husband, who is a C.P.A., always put on a brave front for Julie from Connecticut, friends told her that he would sometimes cry between clients after her diagnosis last December at age 37. “He would see them come in as a couple and they’d talk about their retirement funds, IRA’s, etc. He would think about us and wonder ‘Will we retire together someday?’ Cancer doesn’t just affect the patient, it affects the whole family,” she says.
“It sucks to get cancer so young. It sucks to lose your hair, breasts and period all before you turn 28,” says Beth from Long Island, who was diagnosed at 26 and had a double mastectomy. For her, support came from folks she met on-line at both the Young Survival Coalition and websites. “But you can endure and you do get through and we all will come out of this on the other side, especially since we have each other in the fight with us.”

For more information about young women and breast cancer:

Tuesday, March 25, 2014

Too Young

Yesterday while surfing FaceBook, I discovered that a friend I went to high school with passed away. From the comments, I found out that she had been ill for the past four years, but no other information about her illness was posted. Many, many people expressed great surprise that she had been as sick as she was.

We were never very close, but finding out about her passing really rocked me. Her mother - who was a pretty good friend of my mom's back in our high school days - died of BC about two years ago. Her father use to be my boss. Her brother and I ran on our school's track team together as well. Again, she and I weren't particularly close, but our families had a connection - and we were only four months apart in age.

I knew that she had married a minister and they lived in Maryland with their four children. I did see her at her mom's funeral, but only for a quick offer of condolence and a hug. The last time we really chatted was at our 10th high school reunion. Our 30th is in two months and it really saddens me to know that she won't be there.

Reunions stir up all kinds of mixed emotions for me. The first reunion I ever went to was my mother's 30th high school reunion in North Carolina. My dad had a project due at work and could not take the time off, so I was her "plus one." I still have the group picture the EJ Hayes High School Class of 1961 took just before dinner. I take it out every now and again to see if I still remember where my mom was sitting and to study her face for any signs of illness. I do that because six months after that photo was taken, my mom died from the cancer she didn't even know had returned. Brain mets took her away from us almost three months to the day after her 49th birthday.

My 20th high school reunion took place about a week after my own breast cancer diagnosis. When I look at the photos we took that night, I see a happy, smiling me posing with friends I hadn't seen in a long time. But I remember that I spent the entire night wondering if I would be around for the 30th reunion. I was terrified that my child would be looking at the group picture we took that night, scanning my face for signs of illness.

Now here comes my 30th - but I'm not so much thinking about myself as I am about my friend and her family. 47 is too, too young to be buried. It's too young to leave a relatives and friends behind to grieve. It's too young to leave loved ones alone, struggling with the absence. Thinking about her family and what they are facing makes me remember my own when my mom was no longer here.

My dad was also 49 when his wife died. Although I wasn't a little girl that needed to be taken care of (I was 25), there was a definite, palpable void my mother's death created in the house. I often tell friends that it was so, so hard at 25 that I don't think I could have survived had it happened 10 or even five years earlier. But that hardly compares to the thoughts I have today at age 47 about how my father at age 49 even dealt with the death of his life partner.

If my Beloved were to just be gone tomorrow, I don't think I would be able to function. If we had children together, I have no idea how I could possibly care for them because I'm sure I would not be able to do much more than breathe - and that's not hyperbole at all. It's just too big to even fully wrap my head around.

Today, while still trying to come to grips with the death of another person in the prime of their lives, I think of my dad, my friend's husband and her dad as well, as aging has made me empathize a whole lot more with how dealing with the loss of a spouse can probably come close to totally paralyzing a person. 

What do you do with that? How do you get up the next day and not be angry at the world? How do you hold it together after the arrangements have been made and the concerned friends have stopped calling to see if you're OK? How do you just go on without them?

I simply don't know, and I'm so very saddened by the idea that anyone has to figure that out.