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. 

Another Sad Goodbye

Friday is usually a pretty laid-back day around here, but for a bevy of reasons, this past one was a bit of a mess. My Beloved - who is a full-time college student - had his one class canceled but had a few appointments to take care of. I also had some running around to to, so much of the early part of the day was spent just missing each other. Around lunchtime, he came home just as I was about to leave and handed me some pretty crazy news: he'd just found out that our friend Carmen died last month.

Wait...I just talked to her, I said. But when I raced to my phone to find our last text communication, I realized it was actually in October. I'd just seen her, though, I thought, in the grocery store with her daughter as I was shopping with my son. But my son reminded me that our short visit was actually in September. Instantly, I felt like THE worst friend in the world.

Carmen is the wife of our mechanic. Whenever something is up with any of my family's vehicles, she is usually the smiling face we see when we go to pick the cars up. She was as tall as I am (6'2") and ran in college just like me, so we always had athletic stuff to talk about. Always smiling, her love for her family was obvious, as something about at least one of her four children usually found its way into our conversations.

Since she restarted treatment, Carmen had been hospitalized a few times and I'd call/text to see if she needed anything or to chat. Once, she asked for lemon bars and sunflower seeds, which made me laugh. She had a knack for doing that.

But my "How ya doing?" calls turned into texts and the texts soon became fewer and further between. I flat out fell off. No excuse, really - other than life doing its thing. Blink and months passed, it seemed.

So Friday's news was like a punch in the gut. My own guilt aside, I kept thinking of her children and family now facing their first holiday season without her and I remembered the fear in her husband's voice when I'd talked to him that night she was admitted. Mostly, I remember being that family member and having to face that stone-cold reality that life as you know it will never be the same again.

That void that is left when someone close to you deteriorates and dies from any disease is never quite filled. I was 25, not 16 when my mom died and I have never lost a spouse to this disease, but I can empathize so very much. The idea of that raw pain so close to the surface is a hard one to fully fathom, but once you've been there, you understand it in a way that makes you hurt like nothing else really can. Hard to explain, but it is just the same.

Rest in Peace, Carmen.

Wash. Rinse. Repeat.

My mechanic is a very cool guy with a very cool family. His wife, Carmen, has done almost as much work on my car with him as he's done solo. She's talllike me and an avid runner so we usualy had lots to talk about when I stopped by to pick up my car or called on the phone to set up an appointment to have a tie rod or control arm repaired/replaced.

In the middle of last summer, my car broke down on the way to work. I was able to make it home and straight to my mechanic's house where my Beloved met me to drive me the rest of the way. When we knocked on the door and Carmen opened it, she was bald and wearing a surgical mask. She explained that she was in the middle of chemotherapy for leukemia she was diagnosed with earlier in the year. Yep - shocked doesn't quite cover it.

Through varous car issues, my family has seen our mechanic many times since. A few times, I'd call when they were in the car together either going to or coming from chemo. When I called to see if he could take alook at my now 10-year-old car earlier this week, he said he and Carmen were on their back home from chemo and he put her on the phone so I could chat with her. She said her bloodwork came back a little weird and her onc did a bone marrow biopsy that she needed to come back down for the next day to get the results. Usually one to refuse help, when I asked her if she needed any, she asked if I'd mind driving her down the next day so her hubby wouldn't have to spend another day away from work. I'm off on Fridays, so it wasn't a big deal at all.

It had been a while since I'd seen her, but when I got to her house to pick her up the next morning, the first thing I saw was her head full of hair. It was growing back salt and pepper in color and very curly. Chemo does that sometimes.

When we arrived, she introduced me to her oncologist, but I noticed that Carmen would not look her in the eye. The doc started right in."Your test results weren't good," she said. "We found some leukemia cells. I'd like to admit you today and start you on a steroid while we wait for the complete results - which I should get by Monday - and decide where to go chemo-wise from here."

Carmen is as upbeat as the day is long. But she was a little shaken when she heard that. Imagine thinking you are nearing the end of the treatment tunnel and the light you see is just a train waiting to flatten you. Again. Who wouldn't be shaken by that?

Between leaving the doc's office and being admitted to her room on the other side of the hospital, Carmen had to call her hubby to tell him what was what, call her oldest daughter to ask her to pack a bag for her with some essentials so her husband could bring it by later, call her mother and brother and tell the nurses on the floor she'd spent three months with during her last extended stay why she was back. By my accounting, by the time she got to her room, she'd told the story of her new diagnosis a total of eight times in less than an hour.

While the hospital staff prepped the stuff they needed to prep, we grabbed some food from the cafeteria and brought it back to the seventh floor lounge to eat. We talked about almost everything under the sun - from evil ex-husbands and fast-growing children to life in our town and our chosen career paths. We talked about everything but cancer.

I stayed with her until she was settled and they started and I.V. for the steroids. My plan was to wait with her until her hubby arrived but she seemed like she was getting tired and I realized that she hadn't had any alone time since she got the news from her doc.

This is the "new normal" that is cancer - plowing ahead and praying for the best, but knowing the absolute worst could be just a blood test or scan away. It's worrying about how your family will take the news that the horrible that dotted the year would have to be repeated once again. It's trying to keep upbeat and positive when you are scared out of your mind. It's meeting a hospital roommate who just turned 30 a few days before but has been dealing with cancer since age 16.

It's really trying to stay sane where there seemingly isn't any rhyme or reason to the crazy that has become your life.

Carmen was 51 weeks out from her intial diagnosis. She did all that she was supposed to treatment- and lifestyle-wise, and still it was almost like the previous year of chemo, scans and blood work even didn't happen. As a survivor, it's hard not to wonder what kinda sense that makes. Such an absolute crap shoot this disease is.

I called to her husband as I left the hospital to tell him how she was doing and let him know I was heading home. He sounded absolutely terrible, which is understandable. When a person is dealing with a cancer diagnosis, their family is dealing with it, too. The weekend, I'm sure, will be spent with them worrying about each other an awful lot.

But there is normalcy, too. Carmen, who handles her household's bills, said she was worried because her hubby would be in charge of the finances until she made it home. "I can imagine coming home and there being no TV because he forgot to pay the cable bill," she said. Totally normal. What mom doesn't worry about the home front when she's not there?

"The best part about starting high-dose chemo again is that I won't have to worry about shaving my legs this summer," she told me while the nurses were trying to find a vein for her I.V. Pretty normal. What woman isn't looking for a way to save some time? 

Cancer sucks, by the way...

Thresholds

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...

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

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.

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-era 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…

A photo and card left on her dresser Christmas morning.

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.

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...

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.

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...?

Perspective

Chief

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...

Stupid Effin' Cancer...

It happened again. This morning, I found out that yet another BC sister is reaching the end of her journey. Of course it made me really, really sad, but I also felt utterly and profoundly pissed off. I can't believe another family may have to say goodbye to a soon loved one due to this ridiculously insidious disease. Ugh.

This has been a heck of a year so far. I've lost several friends and acquaintances to this beast and several more to heart attacks and accidents. Still reeling from the news of one untimely passing, a call, email, text or Tweet would come about someone else's. The memorials and funerals have truly exhausted me, but they have gotten me thinking about legacy a lot more than ever.

My reality is this: I am a breast cancer survivor. Since this disease is such a crap shoot (in that no one yet knows why some BCs get gone after treatment and others come back) and there is absolutely no cure for this disease, the chance that mine could come back with a vengence and take me out is very real - even after seven years of being NED. Other than some meories and a few blog posts, what will be left of me after I'm gone? And what will those life left-overs say about me and what I did with my time here on earth?

The friends whom I lost ranged in age from 21 to 65 years of age. Their legacies include their children, their writing, their advocacy and the promise of what life had in store for them had they been here still to live it. They leave behind husbands and wives, children and Internet sisters, girlfriends and parents, relatives and friends who all remembered them "when" - when they were alive and kicking, doing their thing and living life like they'd retire and have grandchildren. Sadly, they didn't. How will the memories of who they were live on?

A few days ago, I was asked to write a bio for a presentation this spring. I was warned that writing about myself can be difficult - which I already knew, but I really had no idea why until I sat down to write this particular bio. Most of the people reading it will know me from the world of martial arts, although the award is for teaching outside the dojo. The truth is that I'm more than just a teacher and a karateka, but if you only see me in a gi or behind the podium in a lecture hall, you'd be none the wiser. The difficulty in writing about all you do and all you are, I found, is all about what NOT to include. Who wants their bio to read like they are a superhero?

But isn't that what we all are? Rachel, Elizabeth, Tim and Mr. Guzman certainly were. Nobody just does one thing all their life - be that world politics, a more mundane day job or heading a fabulous yearly fund-raiser/event - and they were no exception. We're all much more of a multi-faceted entity than how we can describe ourselves to someone we're meeting for the first time.

Today, this super hero is ticked off. It's time to cut the bull and find out what causes this disease so we can find a way to end it forever. It's time to stop the stupid parade of pink crap - and the way BC is feminized and turned into something cute, beatable and oh-such-a-gift. Fuck that. Cancer kills - and despite what you see about early detection, breast cancer is no exception. It's time to start asking where the millions raised each year for research actually goes and time to start asking why Stage IV/metastatic breast cancer gets too little attention and funding when it's taking so many people away from us.

April will mark 20 years since my mom died of brain mets - but in that time, despite the billions raised "for breast cancer" (whatever that means), the death rate for this menace has not changed an iota. That's some serious crap right there...

I'm tired. Tired of sending condolence cards and hearing about folks going to hospice. I'm tired of funerals and memorials for sisters who left us way too soon. I'm tired of the anxiety felt when it's time for a visit to the oncologist for myself or one of my sisters and equally as tired of the cute pink ribbons that trick the public into thinking dealing with BC is as simple as having surgery, undergoing with chemo/radiation and never having to deal with this beast again. I'm. Just. Tired.

I hope you are, too.

Thanks For Being So Narrow-Minded, Komen

By now, the story of Komen's funding pull for Planned Prenthood BC screenings is well-known. Like many survivors, I'm shaking my head over it.

But I am encouraged by the folks who are not only calling Komen out, but donating to Planned Parenthood. Some estimates note that Planned Parenthood has received about $680K in donations in the last 36 hours. That should help cover the $640K lost, I'm thinking.

Although not one person I've seen cheering Komen on for doing the right thing has been able to aptly explain what abortion has to do with breast screenings, the spittle is flying. But most of the comments I've seen after articles, Facebook posts and message boards about this issue seem to be appauled that the Komen would yank funding to an organization that provides so many screenings for so many women without insurance who have no where else to go for them. That so many have taken to giving to Planned Parenthood directly speaks volumes.

So maybe this is the "big thing" we needed to get folks to stop thinking of Komen as an alturistic entity solely about ridding the world of breast cancer forever. Perhaps this will get folks who've walked, run, bought silly pink products and/or otherwise donated to Komen to see that maybe the business side of pink is more important to the agency than saving women's lives.

If this is the issue that gets people to understand that there are other breast cancer organizations out there that really ARE about researching for a cure and helping BC go the way of the dinosaur, it really wouldn't be a bad thing, I'm thinking. And if that's the case, I'm most thankful to Komen. I just hope that they take all those pink ribbons with them when they fade into oblivion.

It's been real, Komen.

Let the Pink Parade Begin

This afternoon, I went to lunch with a few friends. We didn't even get in the door of Panera Bread before being greeted with a pink ribbon - via a sign that let us know all the proceeds from the day's purchases of pink food products would be donated to some sort of generic Breast Cancer organization. How much, what organization, where in the organization (for awareness, education or cure) were not even mentioned. So I asked the manager.

Of course he had no idea, he just regurgitated the few sentences that were probably on the memo he received from corporate last week. When I pressed him for specifics, he admitted he didn't know and directed me to the company's website which "should have all that information," he said.

And of course it did not. Not a word about it - not a pink ribbon or a mention that tomorrow - October 1 - even kicks off BC Awareness Month. So of course I hit the "Contact Us" tab and left a small book about the nature of my problem and why it just ain't cool to pink wash. Maybe they'll respond, maybe they won't. I'll keep you posted...

The Very BIG Business of Breast Cancer

Many of my friends and family know how the site of pink batteries, M&Ms, oven mitts and vacuum cleaners can send me into an absolute frenzy. They get how the parade of silly pink products that happens every year about this time - all in the name of breast cancer awareness month in October - pisses me off to no end. They understand that I have issues with how money is raised and where it doesn't go because I've told them (OK - ranted) about it endlessly. They also know that the mention of Susan G. Komen "For the Cure" makes my eyes narrow and my eyebrows nit really close together - but still, they love me :-)

I've been tweeting and FaceBooking about it, but every once in a while, I need help getting the message out. So I'm grateful to Marie Clare for writing an amazing article detailing why we should all think before we pink. Please give it a read and share the link with your family and friends!

Seriously - How Hard Could It Be to Find a Cure?

Tomorrow morning, a friend will be heading in for a biopsy for calcifications that showed up today on her annual mammogram four years after her original diagnosis - this less than a week after a mutual friend of ours died of brain mets. My mom died of brain mets in 1992. Can't tell you how much I hate cancer today...

Now just think for a moment about all the walks and races that have been held and the silly array of pink products have been sold since my mother's original diagnosis in 1988. Seriously - are we any closer to a cure today than we were 19 years ago?

Enough of the bullshit. Enough of the pink perfumes and the beautification of breast cancer - because it's really far from cute, feminine or pleasing to the olfactory system (and anyone who's ever battled this beast or stood beside someone who has can attest to that). Enough ribbons and batteries and baseball gloves and vacuum cleaners already - a CURE is what we really need.

Sure, BC probably gets more attention and funds than any other cancer, yet mothers, sisters, grandmothers, aunts, friends, neighbors and co-workers die every day from it. There's something wrong with that picture.

And I don't want to hear about how multi-faceted BC is. Yep - there are lots of different types of breast cancers - I get that. But freaking pick one already and start there. I don't understand how difficult that is, I really don't.

So I logged onto Susan G. Komen's site to find out if they could help me understand it a little better. I saw from their little pink pie chart that only 25% of what they take in each year is actually allocated for "research and awards" (the "awards" part is supposed to be to local programs that aim to help women, so even less than that actually ends up in the "research" pot, it seems). But a combined 51% for "education" and "screening"? Important, true - but more important than researching a cure? Hmmmm...

And of course, the survivor in me hears a ticking clock somewhere off in the distance. If I ever have a recurrence or a new primary cancer, will there be much more hope than there is now that a cure will be found before I run out of time and treatment options?

I just wish I had more middle fingers to flip at breast cancer and all the bull that goes along with it. Rest in peace, Elizabeth B.

Wardrobe FAIL

For those who don't know, I am a martial artist who spends way too much time in a karate uniform/sweatpants and a tank top to train/teach or when I head to the gym for a date with my old nemesis, the treadmill. As a result, when I do get the chance to dress up in real, live, girl clothes, I usually jump at it.

Last night, opportunity knocked. A black-tie scholarship/awards diner was held in NYC for a karate organization our dojo frequents. Wow - an occasion to wear a swanky dress, cute heels and a little blingy jewelry? I'm there! And thus, my dress hunt began.

The problem was the 3/4-inch wide divot to the right of my sternum left from the removal of a rib during my breast reconstruction. Anything I found that was swanky enough was cut just low enough in the cleavage area that my divot was on display. Just. Great.

But eventually, I found not one but TWO gorgeous dresses for the event. The first was a simple but elegant sleeveless black tea-length dress with a high bodice (just under the bra-line). It crossed in a "V" in the front which made only the corner of the divot visible. The other was an amazing sleeveless/backless wonder that was almost ankle-length. Long, scarf-like pieces of fabric extended from the drop waist to cover my boobs. The idea was to tie them at the neck and let them hang down the back to flow oh-so-gracefully behind me as I entered and exited the room. Dress #2 was HOT! And the divot wasn't a problem because the fabric was wide enough to cover it while still letting a little bit of skin peek through. Wearing a bra was not an option because the back was completely out. Only a very low-riding corset-type bra would have had any chance of not bring seen from behind and I wasn't able to find one that dipped all the way to my waist.

When I stood posing in the mirror with my arms to my side, all was well. But as soon as I moved my arm forward a few inches or above my waist, too much skin was visible on profile - and that skin included the edges of the scars from my IGAP. Hmmm...that could potentially made cutting the dinner chicken I'd be eating, bringing a fork to my mouth to chew it or especially the "throw-my-hands-in-the-air-and-waving-'em-like-I-just-don't-care" dancing I was planning after dinner out of the question.

So off I went to find some kind of under-dress solution. Thought I had my answer with a mini-corset bra that had no back but stuck to the body about mid-way between the armpit and elbow with some kind of re-usable adhesive. I was game to give it a try, but I could only find it in "nude" - which is a euphemism for "day-glow" on a brown girl like me. Grrrr...

Eventually I found and bought invisible two-sided tape designed to stick to the sides of fabric and skin to hold the dress in place, but it only stuck to the dress and not me. $10 totally down the drain...

With the departure time for the event getting closer and me still with hair and makeup to do, I finally changed into dress #1 at the very last minute. Yeah, I looked great (not tooting my own horn here, just sayin'), but what an exercise in futility and frustration...

Wardrobe issues. I know it's a very minor blip in the grand scheme of things, but sometimes, it can feel like a very big THING - and yet another gift that keeps on giving from the cancer gods.