The Week Of...

Lots of religious days of importance are happening this week - including the start of Holy Week for Christians coinciding with Jewish Passover celebrations. As my mother died on Easter Sunday, it's been a conflicting time for me for many years.

Twenty-seven years ago this week, my family was everywhere emotionally. We'd received the devastating news a few weeks before that my mom's breast cancer had metastasized to not only her lungs and liver (which she knew about), but also to her brain. In addition to the struggle that comes with knowing someone you love has only a short time left in this physical plain, my dad insisted that my mom not be told about the new diagnosis, and my disagreement with his insistence led to a lot of additional tension.

Hospice was around, as was a day nurse that helped administer medications to mom during the day. Back then, adjuvant treatment included oral dilantin to help eliminate brain swelling. It had to be administered every six or eight hours, if I recall - plus an N-G tube had to be taken care of to make sure liquid nutrients could be given as well, as she was unable to eat. Add the steady stream of family and friends happening by to visit, and it's not hard to get that there was lots of movement in and around the house during Holy Week that year. But the push to aim for normalcy was strong.

I'd moved back home less than a year before from Philadelphia to deal with a career change/transition from photojournalism that involved deciding if graduate school was the direction to take. In between gathering GRE and grad program application information, I was also training for an outside chance at trying for another Olympic team. Yes, things were crazy busy.

Because mom was pretty immobile, changing her bed sheets was done the same way hospitals do it: by rolling her over instead of getting her out of bed. But a new Hospice bed delivery required that we get her up to actually change beds. During the relatively quick exchange, we helped her sit in the big comfy chair in the room, a plush recliner that happened to sit near a dresser. Not two minutes after she got into the chair, she glanced into the mirror and was pretty shocked to see that all of her hair was gone from the radiation she'd received in the hospital when her metastasis was discovered.

"Wow," she said as she rubbed her head. "I'm as bald as a cue ball!"

She didn't ask where her hair had gone or why, but I think she knew.

As the Olympic Trials were around the corner, I had decided to open my outdoor track season with a meet in New Jersey that seemed to be about an hour or so away. My mom was always my biggest cheerleader, traveling the country with me to meets through the years - both during and after college. She was actually more excited about the meet than I was.

The night before the meet was Good Friday. As lots of folks called to see how she was, I remember overhearing my dad telling folks he hadn't seen in years that my mom was acting a bit delirious, describing her as "talking out of her head." That totally shocked me, because I hadn't witnessed anything like that at all. She and I talked all the time, although she talked a lot less than she use to.

I remember giving her a manicure that night. While I painted, she talked a bit about the meet, asking if my uniform was clean and if my car was gassed up and ready to go. She said she wished she could go and watch me compete. While I painted my own nails the same color I told her she'd be with me in spirit, but she was already fast asleep. I took this picture of our hands together a few minutes later.

My event started relatively early so I had to leave on Saturday when it was barely light outside to make it on time. But it ended up being much further away than I'd thought and it seemed like it took forever to get there. The whole while I drove, I kept thinking about how horrible it would be if my mom passed away while I was stuck in my car trying to get to or from a track meet. Those thoughts and the very cold weather made me warm up, take just one jump (winning the event at a pretty low height), get back in my car and drive home as fast as I could.

As soon as I poked my head into the room, she smiled and wanted to know how the meet went.

"How did you do?" she said.

"It didn't go so well," I told her.

"Don't worry - you'll get 'em next time."

Those raspy words were the very last ones she ever said to me.

Around midnight, when I went in to give the dilantin, her breathing was very loud and labored. I knew instantly that I needed to get everyone up and here as soon as possible. I told my dad, then called our pastor. His wife told me he'd be right over.

We - my dad, grandmother, great aunt (grandmother's sister) and the pastor - sang and talked to her for what seemed like both an eternity and only a few minutes. Sometime after 4am, her breathing got even more labored and shallow. I was standing near her left leg and just kept rubbing the tiny spot above her knee. Seconds later, she took her last breath.

My mom passed away from metastatic breast cancer on 4/19/92 at 4:19am.

Folks around the globe were getting up and prepping to get to Sunrise Services to celebrate the resurrection of Jesus. I was calling the local funeral home to make arrangements for them to pick her up and prep for her funeral. I always thought there was a strange irony in that.

This year the 19th is actually Good Friday, and I have been dreading it big time. Of course I remember the day she died, but because Easter Sunday isn't a fixed date on the calendar, the dates don't coincide every year. Memories seem to hit a smidge differently when they actually do, though.

In the years since, I've married, become a mother myself, divorced, been through all sorts of life changes and even married again. This is the first time I've ever written about those last days with her.Thanks for indulging the need to commit these thoughts and memories to virtual paper. I guess it was important for me to do this today and in this way.

May you enjoy your holy day celebrations with your families or with whomever you celebrate. I plan on trying my best to do the same. 

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 Breastcancer.org 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:

Young Survivor’s Coalition 

The American Cancer Society

Of Breasts and Femininity

It's funny how all-consuming my breast cancer journey was for a while - that is until my reconstruction was finished. The urgency about it all sort of faded for me soon after tattoos were complete, evident by the fact that I never even posted about getting them done. When all of this was fresh and new, never did I believe that I'd be able to go a few hours - let alone months - without thinking, talking or writing about breast cancer. But I no longer even check into a breast cancer support site that had become my lifeline anymore and I only seem to think about cancer when it's time to see my oncologist...

Yesterday, I took the day off and found myself watching the "Tyra Banks" show in the middle of the afternoon. The show was about how size matters - specifically, the size of a woman's butt, hips, thighs and breasts. On stage was a panel of "experts" - five guys who sat and observed, giving their take on women's backsides and bra sizes. I guess they were there to prove right every stereotype about men and what they're attracted to, because that's exactly what they did.

But it was truly amazing to see how many young women in the audience and on stage equated their femininity with how their asses look or how many guys stare at their boobs when they walk into a bar. Two women, upset with their A cups and the fact that their best friends had huge ta-tas, had practically spent their whole lives lamenting the fact that their small breasts had kept them from truly enjoying life. They only lit up when they were given push up bras, breast enhancement pads and low-cut shirts to parade in front of the gaggle of guys at a mixer. Neither of the women seemed bothered by the fact that the guys hardly looked them in the face at all; they were both just sooooo happy with the attention that they didn't know what to do.

Next came the segment where the panel of guy experts tested their visual acuity by guessing the bra sizes of random women in the audience. To their credit, most of them nailed the cup sizes, but almost none of them got the back size correct. The poor fellas had no idea really what the numbers before the cup sizes actually meant and a few kinda thought that the bigger the number the bigger the boob.

There was even a woman who admitted to using her boobs to get guys to pay her rent, buy her gifts or do things for her. She even told a story of how she once had a guy in a bar give her the $600 in his wallet just for a quick feel. When Tyra asked her if she thought the idea of taking money to get felt up seemed remotely like prostitution, she simply laughed the idea away.

Not one woman on the stage or in the audience stood up to say she used to be a certain cup size but breast cancer had sort of changed that. Nobody flashed a breast prosthesis and asked the panel to figure out what the hell size it was. Nobody really even thought it was odd that losing one or both breasts to disease was even a possibility. It was really sad. And I'm planning to write Tyra today and tell her the same.