Here’s the Thing

The thing about all these breast cancer women I know is that many of us have never met in person. We have connected mostly through mutual friends, blogs, and Facebook, and together, we share our stories, raise awareness, spread hope, swap wigs, and find mentors for each other. We share a common bond that makes personal contact unnecessary, and when someone in our community passes away, the sadness runs deep, and the reminder that none of us is immune to death really stings. Tomorrow, I am confident, will be a better day.

Read More

Raw October — Day 9 (A Million New Cases)

Raw Octoberraising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Wrap your head around this:

“According to the World Health Organization, there are approximately 1.3 million new cases of breast cancer and 450,000 deaths worldwide annually. Breast cancer is the most common cancer among women. The majority of cases are sporadic, meaning there is not a family history of breast cancer, as opposed to genetic, where genes predispose a person to the disease. Men can also develop breast cancer, but it accounts for less than 1 percent of breast cancer cases.”

National Cancer Institute. (2012). Study reveals genomic similarities between breast and ovarian cancers [Press release]. Retrieved from http://www.cancer.gov/newscenter/newsfromnci/2012/TCGAbreast

Read More

Survivor’s Guilt

Sometimes, I feel guilty for surviving cancer because some people are not so lucky. Why did I get a break when so many, like Amy, did not?

There’s nothing fair about the way it happened, the way Amy died just 15 months after a breast cancer diagnosis seemingly similar to mine. She heard the same string of chilling words—you have cancer—as I did, just months after a doctor hurled them at me, over the phone, a day before Thanksgiving. Both in our early 30s with husbands and small children, Amy and I felt like two peas in a pod, situated in what we believed were almost identical positions. We were both young, both with early stage breast cancer. We both knew our cancers, while caught early, were considered aggressive because of our age—young women tend to have aggressive forms of the disease—but we also knew we had a high likelihood of survival, about 93% for at least five years.

Amy and I had common hopes, fears, and worries, and, on several occasions, we cried tears we were sure flowed from the same well. We also shared an instant urge to reach others with our breast cancer stories. Amy welcomed local newspaper reporters into her world and allowed them to capture through words and photographs her most intimate cancer moments. I began authoring my own breast cancer blog and then ventured into the world of freelance writing. We both wanted to make our experiences matter. And judging by the flood of reaction we received from our combined efforts, it’s clear we did.

Amy and I shared victories—we both managed to escape the threat of lymph node involvement—and we shared cards and e-mails. Thank you for holding my hand through this journey—it would have been pretty lonely without you, Amy wrote in one e-mail.

Amy and I also shared care packages, family photos, even hats. If misery loves company, then Amy and I were in love. And in celebration of our love, we basked in the glory of our most important similarity—our cancers had not spread. This was key to our survival. Or so we thought.

A mutual friend—her high school buddy and my college roommate—matched Amy and me. Ericha was one of a few close friends who after my diagnosis offered to hop on a plane and come to my rescue in Florida. I never accepted her offer—I was sure I could handle cancer all on my own—and so she stayed in Ohio where Amy, also an Ohio girl, welcomed her assistance. It worked out well this way.

Ericha helped Amy as she recovered from surgery, reconstruction, chemotherapy, and countless physical and emotional twists. She watched Amy’s kids—ages 4 and 1 at the time—and cleaned her house and drove her to appointments and selflessly assumed some of the burden drowning this young wife and mother who continued working as a nurse while managing a life with cancer.

“I quit my job,” Amy told me just after she announced her cancer had returned. She said she should have quit after her first diagnosis. She should have taken better care of herself. She should have played with her children, spent time with her husband, given up the chore of work. She would do it right this time, she said. She would crush cancer. She was sure of it.

I wrote and published a post about Amy on The Cancer Blog just after she told me how cancer had shown up in her brain and lungs, just five months after her chemotherapy for breast cancer ended. I wrote about my shattered hope, my fear this would happen to me, my complete and total sadness. And then Amy left a comment on my post. She wrote:

Jacki, I am not giving up. I will beat this again. Don’t you give up yet. I have Luke and Ella and they alone are worth fighting for. Just everyone send me your prayers and positive vibes. Quoting the cancer crusade couple, “Setbacks are a chance to pause and review the lesson of life.”

Amy, the one staring down death—doctors said she had two to 12 months to live—was comforting me. Amy, with her spunk and spirit, convinced me she would annihilate this evil disease. I believed her.

Amy lived for only five weeks after she wrote these words. Ericha called me with the news of her death just as I was leaving my house one Saturday morning to run in a race. I stopped in my tracks when Ericha told me—Amy passed yesterday—and I felt nothing but shock and sorrow for the duration of the run I struggled to finish. I finished for Amy, though. If she could fight cancer—twice—then I could surely pound out a few miles in honor of a friend whose face I never did see.

Amy and I talked about meeting at the beach with our families one day after we’d survived cancer for a few years. We dreamed of going on the Oprah show and proudly announcing our survivorship. We talked about a lot in our short 15-month friendship. What we didn’t talk about was that our situations really were very different. Perhaps we weren’t aware of it at the time. Perhaps we subconsciously chose to find common ground in the midst of our harrowing journeys, to ignore the fact that we were not traveling the same path at all.

Amy had a family history of breast cancer. I did not. Just after Amy completed her chemotherapy, her mother was diagnosed with the same disease that now has affected four generations in her family. Additionally, Amy’s tumor was slightly larger than mine, she received a different chemotherapy protocol than I received, she was not eligible for a year-long drug treatment I accepted to keep cancer at bay and because she had chosen the radical route of removing both of her breasts—I had a lumpectomy—Amy was not a top candidate for the radiation therapy that zapped me five days per week for seven weeks. She wondered if she should have demanded this treatment. She wondered if it would have made a difference in her survival.

The final and perhaps most significant difference in our diseases is that while Amy’s cancer, like mine, had not spread to her lymph nodes, it had found a way to penetrate her bloodstream and was spreading in a secret, silent, and deadly fashion. My oncologist, who dried my tears when I sobbed about the unfairness of Amy’s death, said some young women have a very aggressive disease right away. Amy was one of these women. I, apparently, am not.

There’s nothing fair about the way it happened, how Amy died just 15 months after a breast cancer diagnosis I have now survived for almost four years, how Amy died so quickly and I didn’t, how there is no cure for this mysterious disease that strikes far too many women and some men too.

Amy’s husband sent me an e-mail just after she died. He wrote:

You were a great inspiration to Amy. Your quote ” Fight the Good Fight” was front and center on our fridge. Please don’t let this news get you down, Amy would want your chin up, would want you to keep fighting. Thanks for all your support.

My chin is up. I am fighting. And Amy—thank you for your support.

Read More

Billions Raised, Zero Cured

This, you have got to read: Let’s get real

Because the facts within are sobering. Like these:

  • 1.5 million = women diagnosed with breast cancer worldwide this year
  • 500,000 = women will have recurrences (most will be counted as “cured” because the recurrence is more than 5 years after their initial diagnosis and research only tracks women for 5 years — of these second-timers, 1 in 3 will die of the disease)
  • $1 billion = annual amount invested in breast cancer research in the US
  • 830 = resolutions and bills with the words “breast cancer” introduced in the US Congress since 1991
  • 91 = number of breast cancer drugs under evaluatation by the FDA
  • 0 = number of women cured

There are more stats, just as mind blowing.

Read them.

And what about those photos?

Read More

Goodbye and Sweet Dreams, Daria

Mostly, I feel more hope than despair regarding breast cancer. And then there are days like today, when someone else dies from the disease, and an aching heart hurts me all over.

Daria passed away today. She was a Facebook friend, a sister blogger, a hard-core survivor.

Daria was diagnosed in 2000 at the age of 39 — why do people insist that breast cancer is not a young woman’s disease? — and she was treated with radiation, chemotherapy, and hormone therapy. Then her cancer recurred in her chest area, and then another lump was found in her breast, and then it showed up in her lungs, liver, and bones. As a result, Daria was living on chemotherapy, and had been since August 2008. Remarkable, she was, digging up the latest news and views on breast cancer and sharing all of it for her Facebook friends, blogging her daily triumphs and troubles, inspiring women all over the world.

And then on January 20, Daria’s husband told her loyal readers that she was no longer able to write. On January 21, he shared that she was resting comfortably but was losing touch. Today, he wrote, “I was by her side and was able to kiss her goodbye several times during the night and then watched her slip away quietly in her sleep.”

Daria is no longer in pain. And that’s a good thing, and it sounds like she can cross off #29 on her bucket list.

But she’s also no longer with us.

And that makes me sad.

Daria’s blogs:
Living With Cancer
Daria’s Daily Pics

Read More

What If It Were Me?

Photo: Amanda M Hatfield, Flickr

There’s this thing I do when I hear about someone newly diagnosed with breast cancer, someone who has experienced a recurrence, someone who has died from the disease.

I compare.

It can be a dangerous proposition, because I’ve yet to find someone with my exact same diagnosis, prognosis, treatment plan, side effects, and on, and on, and on — and until I do, it’s just plain silly to think I will ever follow in another woman’s footsteps.

Still, I wondered when Carmen’s cancer came back, What if it were me? And I worried when Amy found out her cancer had spread to her lungs and brain, What if it were me? And when she died — What if it were me? The same thing happened when I heard about Christy — nearly 11 years after diagnosis, she died. It’s been just 6 years for me.

Here’s the thing: I never listen to someone’s breast cancer story without somehow connecting it to me. Maybe I do this with everything. My sister’s friend is in the hospital right now, trying to recover from a massive stroke. What if it were me? What if it were me with a sick child, a lost job, a broken marriage? What if it were me at that grocery store in Tucson yesterday when Congresswoman Gabrielle Giffords was shot and so many others were killed and wounded?

Breast cancer is the scariest of all considerations, because I’ve had it once, but I am totally, completely, and fully aware that it could be me with a recurrence, or a death sentence. But it could me in a car accident, too, or a natural disaster, or gosh, who knows what else. Horrible things happen all the time, and really, I don’t have that much control over what happens to me from day to day. Yes, I can eat right, exercise well, drive safely, and all that jazz, but mostly, life is just sort of a gamble, you know?

I’m not all that concerned about continuing to think, What if it were me? Not for reasons of panic or anything, just because I think that question just might keep me grounded. Realizing I’m not immune to the bad stuff makes me really appreciate the good — my healthy kids, my loving husband, my paying job, and my healthy body.

What if it were me?

Well, then, I’d just find a way to cope.

Read More

Letter to Cancer a Memory of Christy

A friend of a friend lost her 41-year-old cousin to breast cancer on Sunday. She shared with me the following letter her cousin wrote three years ago, near the anniversary of her diagnosis.

Nina Matthews Photography, Flickr

Dear Cancer,

Wow … can you believe that it has been eight years since we first met? Some days it seems as if it was only yesterday. I have so many mixed feelings about our relationship, it is truly a love/ hate situation. I hate the fact that we ever had to meet but in some strange way I love that we can live together and I am grateful for some of the things that you have taught me over the years.

I need to touch on the reasons for my hatred towards you, you have taken so many things from me. Whether you know it or not you have taken away a part of my daughter’s childhood — she has been forced to deal with situations that only grown ups should have to deal with. You have made it really difficult for me to have certain dreams and goals for fear that I may never realize them. You have stolen my ability to have more children and build a larger family. You have physically beaten me down time and time again not to mention the emotional toll that you take on me on a daily basis. From day one you have been on my mind every day and as much as I want to forget the fact that I know you it is impossible.

There are days when I wake up and my hatred for you is almost overwhelming, it may be that I am sick of going to all of these appointments, or that I am tired of being in pain or it might be as simple as me missing being able to be a free spirit and not having our “friendship” always hanging over my head. I wish I could for one moment forget that we ever met … but the reality is that we did .. for reasons that I will never understand and truthfully never fully accept.

For eight long years I have done my best to get rid of you and just wonder why you are so damn persistent. I mean I know that I am a fun person to hang around with but sometimes you just have to take a hint! Don’t get me wrong I am very thankful for the lessons you have taught me. You have shown me how to love unconditionally, how to forgive completely, how to always have hope and embrace the little things in life. You have opened my eyes to so many beautiful things in this world that one can only appreciate after having known you. You have given me the drive to help others who are in similar situations, to give of myself and make a difference in the lives of others and I will never forget that.

It looks like we are in this together for the long haul whether I like it or not and I am accepting of this, but you had better be prepared because well the truth is I can be a bitch at times and I am used to getting my way. I don’t give up easy and am always up for a good fight. Did I mention that I have great friends and family behind me every step of the way? Well, I do and we are a package deal so just be prepared … we can get crazy at times!

For the past eight years I have wondered off and on why you chose me? I no longer want to know why, the fact is that for whatever reason you did and it is up to me how I deal with it. Every day will be a challenge and I am prepared for this.

As much as I don’t like you, you have ultimately made me a stronger person and being strong is what will carry me through. Here’s to at least another eight years!

Christy

Obituary, Christine “Christy” Khoury-Bell
Community volunteer Khoury-Bell, 41, dies

Read More

My Friend’s Dad

Photo: caitra_, Flickr

My friend’s dad died yesterday. Cancer. I’m not sure of the exact type, but it started in one place, landed in another, and was called melanoma in the late stages. Regardless, the whole story makes me cry.

We were standing in a place called Sun Country — where kids take gymnastics, ballet, karate, and more — when this friend first told me about her dad’s diagnosis. I think we both kind of thought, “yea, cancer, he’ll be OK.” Because, a lot of people are. It’s a rough road — the surgery, treatment, and all — but surely, he’d survive it, I thought.

He did survive — for a while. Then things got bad. There were hospital stays, and feeding tubes, and weight loss. Doctors said there wasn’t anything more they could do for him. Hospice came to his house. And two days after Thanksgiving, he passed.

I am confident he is at peace now, finished with the hardships of cancer. That’s a good thing.

What makes me sad is that he wasn’t OK, which means, even though I’ve survived my own cancer for 6 years, it’s quite possible I won’t be alright forever. I’ve had a good long run, but what if that ends?

That’s what cancer does. It first invades the body, and then it leaves a lingering unknown. Sometimes — like today, as I think of my friend’s dad — it makes me sad. Mostly, though, it keeps me on my toes, keeps me aware of every breath I take, keeps me in awe of all the blessings in my life.

Here’s the thing: I might not be able to control cancer, but I do have the power to turn each day into something spectacular.

Well, that’s my spin on it, anyway.

Read More

Farewell to a Friend

Jean was one of the first people to reach out after I was diagnosed with breast cancer in 2004. She’s the one who left a stack of books on my front porch — one turned out to be a favorite: Love, Medicine & Miracles, by Dr. Bernie Siegel. And she was the one who counseled me at a playgroup in her living room that day I was so sick and nearly incoherent from chemo. I contacted her days later to share that I wasn’t just crazy, but that my blood counts were terribly low and I’d been admitted to the hospital.

I hadn’t seen Jean in years. But I learned last night that she just died of a brain aneurysm. She leaves behind her husband and five children. The oldest is 9, the youngest is 18 months.

My heart is broken.

And somehow, cancer doesn’t seem so bad right now.

Obituary for Jean M. Winner

Read More

1 a Minute

banner_300x250
share.1aminute.com

I told you yesterday that every 69 seconds, a woman dies of breast cancer somewhere in the world. Some sobering stuff on this first day of Breast Cancer Awareness Month, huh?

So, what will you do to stop the clock?

You might want to start by seeing the movie “1 A Minute,” (in select theaters) starting October 6, 2010. You can also make a difference by sharing your story and spreading the word! Got some other ideas? Please share in comments.

Read More

Don’t Forget About Farrah Fawcett

farrah-fawcett-175jd030810
Photo: Oldmaison, Flickr

There was no mention of Farrah Fawcett last night at the Oscars. But the “In Memoriam” tribute did include Michael Jackson. I don’t know about you, but I’m thinking that’s just wrong.

Now, I know Fawcett was mostly a “Charlie’s Angel” TV sensation, but she did star on the big screen, too. Just ask my husband, whose all-time favorite flick “Logan’s Run” features the blond beauty. And there were others: “Extremeties,” “The Cannonball Run,” “Man of the House,” “Dr. T and the Women,” “The Apostle” and more.

Oscar boss Bruce Davis, the executive director of the Academy of Motion Picture Arts and Sciences, says: “It is the single most troubling element of the Oscar show every year. Because more people die each year than can possibly be included in that segment. You are dropping people who the public knows. It’s just not comfortable.”

Still, the girl who fought a horrible cancer with grace and grit, documenting it every step of the way, deserves to be honored. So, here’s to Farrah Fawcett, her contribution to the world of film and, of course, who can forget that great hair!

Read More

About Death

Photo: Sunfox, Flickr
Photo: Sunfox, Flickr

This post is not exactly about cancer, it’s about death (sorry for the somber subject). It’s about my husband’s dad, who died suddenly of a pulmonary embolism 11 years ago on this very date (February 9). It was a Tuesday way back then, too. I remember that as clearly as I recall the early-morning phone call announcing his collapse, the drive to the hospital an hour away, the vision of him on a bed, not breathing, gone.

Maybe this post is kind of about cancer, because, sadly, people do die of cancer. But people die from all sorts of things (like pulmonary embolisms) every day. My aunt just told me that a co-worker and friend passed away the other day — she was 34, a single mom of a 15-year-old daughter, and she just didn’t feel well, then she died. It all makes me so aware of my own mortality. I mean, who says I won’t die far before I should? No one. We’re all fair game in the death department, I’m afraid, and that makes me think that we have a very critical mission before us: we must, must, must live each day as if it’s the last, because, well, it just might be.

I know, somber.

But true.

What will you do to celebrate the gift of today?

Read More

“Survivor” Jennifer Lyon Dies of Breast Cancer

http://jennlyon.com/
http://jennlyon.com/

Former “Survivor” contestant Jennifer Lyon died on Tuesday night. Breast cancer. She was 37.

And this is exactly why I can work myself into a tizzy about the disease: because very young and otherwise healthy women die from it, and since I’ve had it, and there’s a chance it will come back, it’s pretty hard to not get all worked up about it. Mostly, I have hope, though, and I’m pretty sure I will survive for the long haul. I figure if I have more hope than worry, then life will be a whole lot more fun.

More about Jennifer: According to PEOPLE.com, the reality TV star, who placed fourth on “Survivor: Palau” in 2005 and passed away in her home in Oregon, was first diagnosed with stage-three breast cancer a few months after her “Survivor” season ended. She had a modified, radical bilateral mastectomy, then chemotherapy, then she took Tamoxifen. (Tamoxifen is a drug used to prevent recurrence for those who qualify for it. I don’t.)

Jennifer apparently found something suspicious in her right breast in the summer of 2004, but she chalked it up to scar tissue related to breast implants, and she let it go — for a long time.

Don’t do that, people! Don’t let anything go — if you find something, find a doctor. Right away. Then demand a mammogram, an ultrasound, an MRI — just don’t self-diagnose. The results can be tragic.

If you can remember just one thing about breast cancer, make it this: if caught early, this disease can be stopped. It doesn’t have to grow and spread and take over other organs. Small tumors can be removed, your body can be treated, and you can survive. Really, you can. So check your breasts (forget those who tell you self-exams are unnecessary and mammograms can wait) and report anything — anything — that just doesn’t feel right.

OK?

OK.

Read More

Live Like We’re Dying

Remember last season’s “American Idol” winner Kris Allen? Here’s his new song, “Live Like We’re Dying.” According to Austin360.com, Allen’s self-titled album, where this single lives, gets a D+. Says blogger Patrick Caldwell, it’s “precisely the sort of pop confectionery you’d expect from a carefully groomed would-be star, a generic outing that’s all soaring harmonies, inoffensive guitar and utter lack of soul.” About the single that kicks off the album, he says, “with cliche lyrics that — aside from, um, urging you to live like you’re dying — elect to go as broad as possible, lest any listener be alienated by an actual glimmer of personality.”

Call me sappy and cliche, but I, um, kinda like the song, even though the title is a little too much like this one.

Read More

Patrick Swayze Dies of Cancer, Maura Tierney Has Surgery for It

dirty dancing DVD cover
Photo: amazon.com

I should be working — editing nine posts for That’s Fit so they can publish tomorrow — but I’m too sad at the moment, because I just heard that 57-year-old Patrick Swayze has died of pancreatic cancer. He battled the disease for 20 months, which is a lot longer than many folks get (the survival rate for this type of cancer is just 4 or 5 percent for five years), but still, 20 months is not good enough. And so my mind is scattered by the news of his death, and the realization (again) that cancer is a nasty and evil opponent. And while I’m lucky that my chance of surviving breast cancer is 93 percent (November 2009 = five years), I feel more vulnerable right now than I do on most days.

Doesn’t help that I also just read that former “ER” actress Maura Tierney just had surgery for breast cancer and has dropped out of NBC’s new show “Parenthood.” The star’s spokesperson says that 44-year-old is “deeply disappointed” not to be participating in the show, and that “Ms. Tierney and her doctors remain confident that the outcome of her treatments will be positive.”

I’m confident too, because really, my hope is a lot stronger than my fear, and so I just need a bit to recover from the sadness. Then I can get to work.

Read More