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 long while ago. 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 children, 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 option, 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. 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.

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.

Monday, December 30, 2013

Another Goodbye

Audrey just before port surgery a few months ago.
My family has had a rather rough year, but the last few weeks have been absolutely crazy. Saturday, we said goodbye to the matriarch of the family, my 94-yr-old great aunt, Blanche, who died a few days after suffering a massive stroke. In four days, we will do it again for my Blanche's youngest daughter, Audrey. She died on Christmas Day from cancer metastasis.

My Aunt Audrey was diagnosed with breast cancer almost a year to the day before I was. Like me, she'd had a history of breast cysts and, like me, she was diagnosed relatively early and received radiation. While I opted for a bilateral mastectomy, she'd had a lumpectomy instead.

Ten years later, she had a new primary - a stomach tumor that made its presence known when my aunt started having extreme fatigue and anemia. She was diagnosed Stage IV from the beginning and shortly after, a spread to her liver and pancreas were discovered.

Cancer is a mean, evil, bird-flipping witch. Through the neuropathy-inducing chemo and regular blood transfusions, the tumor never even simmered down. It just continued to wreck havoc on first her digestive system and then the rest of her body. Because her stomach was so damaged, eventually a feeding tube was inserted. She lost a ton of weight, spent many days and nights in the hospital before the doctors declared that she'd exhausted all of her treatment options and suggested the family call Hospice.

Still, the flood of people who came to see her never stopped. And on days when she seemed the furthest away, any familiar co-worker, church member or neighbor's face in the doorway made her brighten up in ways that can't even be explained.

The view from her window the day she passed.
My son and I stopped by last Sunday and she talked to us a bit, asking him if he had any money (knowing he's in college, she always asked him the same question when she saw him) and me if I'd cut my hair (like she did almost every time she greeted me). Then she told me "If I'm here on Thursday…" before her voice sort of trailed off. I know she said more, but it didn't register. It felt like I'd been doused with a bucket of cold water.

When we stopped by on Christmas Eve, she was practically catatonic. Her breathing was very labored and her heart-rate was extremely rapid. I knew it would be the last time I would be able to see and talk to her. While I was sitting at her bedside, I saw a little phrase printed on the pajamas she was wearing: "The day is done." Twelve hours later, her day ended. Her daughter-in-law who was next to her said that she just stopped breathing. She would have been 66 in February.

Audrey and her oldest son, Melvin Jr  (Mick).
Hers was the sixth obituary for a family member I'd help put together. It never gets easier - and not just because high school graduation dates and how long a specific company was worked for get forgotten, but because it is just so bloody hard to sum up someone's life in a few paragraphs. Everyone has bits of extraordinary in their lives. It is very difficult to drop a sentence about a childhood or another about a career without making their life read like an anecdote. It seems that no matter how beautiful the prose, the words that paint the picture of who the person was to those who may only have known her during one brief part of it always ring hollow. And it is hard not to wonder what they may have wanted you to include or take out.

My aunt was a mother, a teacher, a devoted church member, a musician, a civil rights activist, a wife, a woman with amazing legs who had no problem telling it like it was, a person who cared about others almost as much as she cared about herself - and then some. And I'm sure there are things she did, thought about, wished for, planned to do and felt deeply about that we, her family and friends, never even knew about.

Every once in a while, she'd call me "Miss Militant" mostly because of my views on women in society and things like the terrible connotation of "good" hair in the Black community. Even before I first started teaching as an adjunct, she was the one person who called me "Professor." One of my biggest cheerleaders, she always made me feel extremely special and like I could do anything on the planet if I wanted to badly enough. "Nothing surprises me anymore. Nothing at all," she told me once. I don't even remember what we were talking about, but I do remember how surprised I was that my fabulous aunt was so, well, jaded.

She and my mom, Maxine, grew up as sisters. They were the children of two sisters, but my grandmother had left their tiny North Carolina town - and her daughter - behind to find a job in the big city (New York City, that is). My mom was one of nine kids Aunt Blanche and her mother, my great grandma Pearlie, raised together in the Jim Crow south. My mom considered all of her cousins siblings, and I always considered Blanche my third grandmother.

Melvin and Audrey say "I Do!"
A few years back, I interviewed Audrey and her hubby, Melvin, for a relationship article I was writing. At the time, they'd been married for over 40 years, but the interview revealed how they met: when my uncle dared his friend to smack Audrey on the butt while they were all in an elevator together. When his friend accepted the dare, Audrey thought it was Melvin who'd gotten so friendly with his hands - and she smacked him. He tried to tell her it was his friend who had goosed her, but she barely let him get a word in edgewise. As fate would have it, they were going to the same place: the apartment of my Aunt Paulette - who was married to Melvin's friend, Lonnie. There are no accidents, I suppose…

As her immediate family is overwhelmed with the shear amount of things that have to be done, I offered to help put together a board of photos for  Audrey's viewing/wake and funeral. As much of my family is staying in town between the two services, we had a blast looking through Audrey's photo albums and seeing pictures of her - and us - after Blanche's service. We found some of Audrey doing "circle time" with the pre-schoolers she taught. We found some of her in a beautiful, little black dress, playfully showing a little leg for the camera. We found some of her pregnant and on bed rest with her youngest, Courtney. We spent lots of time huddled around Audrey's dining room table laughing about times that seemed like they happened just yesterday.
A photo and card left on her dresser Christmas morning.

But a few yesterdays ago, she was here with us - then on Saturday, she wasn't. All of my family is feeling her absence this week. All of us are dreading the difficulty that will be Friday's service. All of us are hating cancer very much right now.

We already  miss you, auntie...

Saturday, July 27, 2013

Farmageddon 2013

Sampson, Susan, Bren, Me, Amy, Linda, Layne, Ann,
Rosemary, Tricia, Leslie, Glenna and Sandy
Last weekend was one of the best I'd spent with friends in a long time. I traveled to a horse farm outside of Baltimore to hang with 11 women I'd "met" on an Internet message board for breast cancer survivors. Before the trip, I'd only met two of them in person.

We came from different parts of the US and Canada. Some of us are urban dwellers while others of us are suburbanites. Most of us are done with active treatment while some of us are not. We are married, divorced and single - with children and without. We all share an affinity for liberal politics and chocolate - but were it not for breast cancer, we probably would never have met each other.

Much of our time together was spent taking pictures, eating and chatting. We talked to each other and we talked via phone, FaceTime and Skype with those in our little group who were unable to join us physically. We also talked a lot about the Zimmerman verdict, the messy art of eating steamed crabs and why tequila is sometimes a very necessary way to bond with sister-friends. Once in a while, a treatment or diagnosis story found its way into the conversation, but it wasn't a real focal point.

The trip was planned for months before we actually got together, and in the interim between all the "Hey, we should get together soon!" and the "What time should we plan to arrive?" talk, our host-to-be got some not-so-good news regarding a cancer progression. While we wondered if it was a good idea to still have our pow-wow or not, our host and her family insisted that we come to enjoy each other's company and take our sister's mind off the news, if only for a weekend. Hence the tequila.

This weekend, after digesting more bad news from our host, another of our sisters and yet another sister's husband, we all seem to be trying to hold on to the energy and serenity our time together created. I can't speak for the rest of the group, but I know I'm having a really hard time with that.

Hearing about anyone having to go another round with this beast is so very disheartening - but when it's someone you know and love, it's much worse. It's hard not to feel totally helpless and ineffective when cancer rears its ugly head again and treatment options and their side-effects start being discussed. For me, not screaming and throwing things has proven to be tough, as has not think of exactly how lives will be altered from the news. Tough to forget that the sneaky bitch that is cancer can reach out and grab any of us again - because it has.

Knowing full well that sugar-coated crap is still just as shitty, I didn't really think we'd be saying "Cheese!" when we posed for group photos. On the count of three, we yelled "Fuck Cancer!" instead.

Fuck cancer, indeed.

Friday, October 26, 2012

Too Stupid for Words

Some things are going on in my karate life; things that involved a meeting last week. In a nutshell, many of my training partners have been "ghost" as of late and, in an effort to get everyone back and on the same page, we went around the room and everyone got a chance to say what had been keeping them away.

One of my dojo sisters is working like a rant mule developing a business - so much so that she has been away from training since mid-summer. Always into wholistic approaches to life, energy and illness, she said she's been away so she can afford health insurance. She needs it because she's been told that the spot on her nose looks like it could be something not good. She can't even go to the doctor now because if she is diagnosed with skin cancer, it would become a pre-existing condition and would not be covered by her new insurance company. So she's very afraid - because it could be something bad but because if it is, she may not be able to afford to get treated.

Cancer absolutely sucks - but that this is actually someone's reality is ridiculous. Honestly, what kind of sense does it make to have your health insurance not cover you when you need it? To keep that from happening, she is working herself silly (so she cazn afford to actually get insurance) and worrying lots - which probably will cause harm (it's been proven that stress weakens the immune system) and that simply shouldn't be.

Our system of care is severely broken in this country. The Affordable Care Act was designed to address this, but the pre-existing conditions part doesn't fully go into effect until 2014, which is too late to help my dojo sister.

What kind of craziness...?

Monday, September 10, 2012


This is not about breast cancer per se - just cancer in general. She's still a sneaky something else and I detest her as a result.

A few weeks ago, my beloved had me pick him up from the car repair shop as his vehicle was having a "check engine" light issue. When he got in my car, he asked if we could swing by his brother's house for a bit because he HAD TO meet him at 2:15PM.

His brother - the oldest of 10 - is quite a big wig in the Air Force. A little over a year ago, he retired from the NYS Air National Guard as THE person in charge of over 5,000 service members in the state, which is the nation's largest ANG. His retirement ceremony and the celebration that followed had top enlisted men and women from all over the place, all there to pat "Chief" on the back, celebrate the military accomplishments he had amassed in his almost 38-year career and wish him well in his retirement. At about six feet tall, he looked quite daper in his dress blues with medals and ribbons gleaming and his gig line tight.

But when we arrived at the house, my beloved, Chief's wife and I had to help him get out of the car, up the few stairs in the foyer and into his favorite recliner because he couldn't walk. 2:15PM, I found, was the time he usually arrived home from radiation treatments for a tumor on his spine that was causing the inability to move his legs.

Not that long ago, Chief had had chemo for lymphoma. Although I'm not sure if he ever really went into a remission, you'd never know it from his demeanor. Lovingly stern, he was the anchor of the family and the one all the siblings went to for advice or to share news, both good and bad. His was the voice I heard on the other end of the phone the night he called to tell us that their father passed away. He was also the one who had put together the specifics for a family cruise this October, setting up the travel agency handling the arrangements and emailing his family members information on what to do to reserve their spots. Vibrant and full of life, he went from military fit to walking with a cane, then walking with two canes, needing a walker and finally a wheel chair - all in about a month.

Last week, my beloved and Chief's son moved his bed, wardrobe and recliner down stairs so he could get to them without having to tackle the stairs of his split-level ranch home. It was becoming more difficult for him to assist with his arms when he was being helped from one part of the house to another. So all the while I was pouting about being unable to train for karate because of an achy achilles, Chief and his immediate family were dealing with that.

Monday night, my beloved called to let me know he was going to be late for dinner because he was en route to the hospital. Seems Chief had had some difficulty breathing and they were heading to the emergency room via ambulance to see what was going on. By the time they got there, Chief was in a lot of pain. They gave him morphine to help ease it. He passed away not long after.

Only 61, he had a lot of life left to live. A husband, father, grandfather, brother and friend to so many, he left quite a mark during the time he was here. As I helped his wife, son and my beloved put together his obituary for the newspaper, that was the thing that stood out the most.

We looked through dozens of military pictures to find just the right one for his funeral service program. Not one for smiling when he was seated in front of the flag in his uniform, he always told the photographer that he needed to take at least one with his pearly whites showing so his wife wouldn't be upset. The one above was chosen because of the serene look into the camera with only the slightest hint of a smile. It seemed to fit.

Yesterday, his wife showed us a picture the two of them had taken together on a recent vacation. Chief wore a pair of shades and a hat to sheild his head from the beach sun. He was hugging his wife and had the absolute biggest smile on his face. That seemed to fit, too.

I'm sure he's smiling now - and will be tomorrow as his family and friends gather to remember his life and be with others who will miss him greatly. Perhaps it will be as celebratory as his retirement gathering last year was. Hopefully, after the tears have subsided a bit, we'll be smiling as well, remembering Chief's life and how vibrantly he lived it.

Rest in peace, Chief...