Enough about her, though. I’d like to tell you about a group of women of the non-celebrity type who definitely are heroes to me.

They are the ladies behind the new book, The Pink Moon Lovelies:  Empowering Stories of Survival.

As I wrote about in my Voices of Hope DVD project post, I’ve encountered some incredible women since my cancer diagnosis who are accomplishing amazing things. Another one of these women is my friend Nicki Boscia Durlester, author of Beyond the Pink Moon. In her book, Nicki shares about the staggering number of cancer diagnoses in her family and about the impact that reality has had on her life. Nicki is a breast cancer survivor. She is also BRCA2 positive.

After publishing her book, Nicki started a Facebook group to provide a safe place for others with hereditary risk to discuss all things regarding hereditary breast and ovarian cancer. That’s a lot of stuff to discuss!

The group soon grew in numbers (I’m one of them!) and evolved into something more than even Nicki had ever expected. Fears, hopes, questions, answers, anxieties, dreams, struggles, losses and triumphs were shared by the group’s members. But more importantly, women grew to care about one another and friendships formed.

Eventually, Nicki got the idea to gather together some of the stories the Lovelies (that’s what they call themselves) shared within this group. She compiled the stories together in a book, The Pink Moon Lovelies:  Empowering Stories of Survival. (Like usual, I was late to the party and missed out).

This book is a collection of fifty of those stories and every story is as unique as the woman who shares it.

In part one survivor stories are shared by women who’ve survived breast cancer or ovarian cancer. In part two stories are shared by previvors – women like Angelina Jolie, women who’ve made difficult decisions to undergo prophylactic preventive procedures before cancer strikes, or the equally huge decision to opt for diligent surveillance.

All of the stories are powerful and inspirational. They are also very much grounded in reality – the reality of living with hereditary cancer risk and the fact that there are not always happy endings.

A cancer diagnosis can feel isolating. Learning you are BRCA positive, or living with the threat of hereditary risk even if you test negative, can be isolating as well.

I often recall the words my oncologist said to me the day I found out I am BRCA2 positive, “You know, you really are quite rare.”

Under different circumstances, such words might have been a compliment.

This is exactly why reading these compelling stories about survivors and previvors all compiled together in one book was tremendously moving for me. Though not all the women who shared their stories in the book ended up testing positive for a BRCA mutation, all the women are like me; they understand what it’s like to live knowing cancer risk lurks in your family’s DNA.

But even if this is not the case for your family, these women are like you too.

They are mothers, grandmothers, daughters, sisters, aunts, wives and friends. They are from different corners of the world. They are women of varying ages, ethnicities, shapes and sizes, occupations and interests. Some have had cancer themselves and some have not.

One of the most stunning realizations for me when reading this book was reading over and over again words written by some of the previvors telling about their earliest memories, which so many times means remembering cancer.

Helen Smith, a BRCA1 previvor from Ohio writes:

“For as long as I can remember, cancer has been a part of my life… I can remember sitting on a tricycle outside watching the medics take my grandmother away on a gurney. My next memory of her was in the hospital. They allowed me to see her… It was the last time I would see her alive.”

And Edel Taylor, a BRCA1 previvor from Australia, writes:

“My first memory was my second birthday and being minded by my Nan and Pop as my Mum was in hospital recovering from surgery for breast cancer.”

Rachel Harrison, a BRCA1 previvor from Minnesota, writes these moving words:

“Memories of being a little girl usually include dressing up in your mommy’s clothes, bracelets, necklaces, and high heels. For me there was one more memory, dressing up in mommy’s fake breast… She was twenty-nine years old.”

Yes, some of the stories include incredibly heartbreaking accounts of cancer-stained family histories, but this is the stark reality for many who live with hereditary cancer.

These women do not share to garner sympathy; no, not these women. They share with one goal in mind – to save lives.

I am inspired by the women whose stories are highlighted in the Pink Moon Lovelies:  Empowering Stories of Survival. They might not be rich and they certainly aren’t famous, not yet anyway, but they are courageous, caring and compassionate ‘Lovelies’ for sure.

I think they just might be heroes too.

Thank you to all the ‘Lovelies’ who shared their stories in this book and thank you to those who share more quietly behind the scenes every day as well.

Important note! 100% of the proceeds earned from sales of this book will go to breast and ovarian cancer RESEARCH!

To enter this giveaway for a chance to win a free copy of The Pink Moon Lovelies:  Empowering Stories of Survival, simply leave a comment below by 5 pm CT Sunday, May 26, 2013. The winner will be announced shortly thereafter.

Sign up to win a copy for yourself, a loved one, a friend, a medical professional or anyone who cares about women’s health. This book will also make a great addition to any cancer center’s library.

So what are you waiting for?

Leave a comment and you’re in!

Image used with permission. Click on image for more information about how to buy.

Also, be sure to visit the Pink Moon Lovelies: Empowering Stories of Survival’s Facebook page and while you’re there, be sure to like it!

Isn’t it amazing the buzz this story has generated? Even more amazing is the fact so many are judging her decision. 

I’ve been reading a few posts and articles with some rather negative comments about Ms. Jolie’s decision. Reading them made me wonder how many of those commenters have witnessed a loved one dying from cancer. It made me wonder how many of those commenters are BRCA+.

I have and I am.

My friend Jackie who blogs at From Zero to Mastectomy had this to say to those judgmental types, “Shut. The. F***. Up.”

You tell ‘em, Jackie.

Of course as a celebrity icon, Ms. Jolie opened herself up to criticism as well as praise when she decided to go public, but only to a point.

Our society is obsessed with celebrities. Our society is obsessed with breasts. And in a sense, our society is obsessed with breast cancer. Put all these obsessions together and well… the unstoppable media frenzy is set in motion until the next big story pops.

I completely support Ms. Jolie’s difficult and very personal decision. I commend her for speaking out about it. Like me (wow, I never thought I’d be able to say Angelina Jolie and I have something in common), she carries a BRCA gene mutation, though not the same one as mine. I’m BRCA2 positive, she’s BRCA1.

Ms. Jolie is an advocate and humanitarian in her own right, so it’s not so surprising to me she decided to go public. She’s never been afraid to do things her way which, of course, is easier when you’re rich, beautiful and famous.

Still, she’s just a woman; one with a known hereditary risk factor. She’s a mother. She’s a wife. She’s a daughter who has witnessed her mother dying from cancer. I know what that’s like. So do too many others. Witnessing such a thing changes you. Finding out you are BRCA positive does too.

Overall, I felt Ms. Jolie’s New York Times piece was well written and certainly from her heart.

Was it perfect? Of course not, but what article is? (okay, I’d like to think this one is! ha)

I was a little bit concerned that some women, especially those who do carry a similar mutation, might feel pressured to make the same choice. There are other options. But in the end, I have confidence that most BRCA+ women will choose wisely.

Women do not need others telling them what to do or not do with their bodies. 

I did feel Ms. Jolie seemed to sweep away the ovarian cancer risk a bit too briskly in her article, possibly giving a wrong impression regarding this serious potential risk. From my experience, the organs down under are often recommended to be the “best first things to go.” But she is young and maybe even planning more children, so this might be why other prophylactic procedures are on the back burner for now.

The bottom line here is Ms. Jolie and her doctors made the best decisions for her.

The thing that bothered me most about her article was that the surgery itself was made to sound a bit too easy. In her article Ms. Jolie stated she was back to work within days after her surgery. Most of us live in the real world and getting back to work in a few days after such surgery is a stretch.

Still, it was a gutsy piece and a gusty announcement. Kudos to Angelina.

I think it’s worth stating that it’s important to remember ordinary women face these dilemmas and decisions every day. Their stories matter too. As Marie, friend and fellow blogger at Journeying Beyond Breast Cancer, so eloquently stated:

“While I am glad that Jolie’s piece has raised awareness and stimulated discussion, it is also important that we balance the discussion with facts and also heed the stories of the ordinary women who have been sharing their experiences online for much longer. The celebrity factor has raised the discussion to the consciousness of the Twitter-sphere today, but the fleeting nature of celebrity news means something else will take its place tomorrow. Meanwhile, for thousands of women and men across the world who have been affected by cancer, the issues will continue to be debated and discussed every day. Don’t forget their stories too!”

Well said, Marie.

Ultimately, Ms. Jolie’s story is just that, her story. She is not responsible for decisions others do or do not make.

We are all responsible for our own decisions  and actions regarding our medical care; but at the same time, we all need and deserve access to quality information, guidance and care in order to be responsible. Disparity is still a problem for many. Not everyone has access to the quality of care Ms. Jolie had and will continue to have.

Does this disparity bother you? It sure bothers me.

If I had a chance to chat with Ms. Jolie now that we are both members of this BRCA+ sisterhood, I would ask her to please keep on speaking out on behalf of all those other women who do not have adequate insurance, or any insurance at all with which to cover the cost of genetic testing, genetic counseling and medical procedures they might choose to take following such testing. I cannot forget about them. I hope she can’t either.

I would ask her to use her celebrity status to speak out about the issue of gene patenting and why it matters to all of us. I would ask her to contemplate carefully what breast/ovarian cancer charitable organization(s) she might choose to partner with. I would ask her to be wary of pink ribbons and all that they are ‘tied up” with.

Most importantly, I would say I’m sorry you lost your mother to ovarian cancer. I’m sorry your children will miss knowing their grandmother. I understand why you made the decision you made. I support you and appreciate that you are reaching out and trying to make a difference.

I would say thank you for sharing; it matters that you did.

It always does.

Do you have thoughts or opinions about this story to share?

Do you believe prophylactic surgeries are too extreme? 

If you were faced with such a decision, what might you do?

Perhaps more focus should be on what it’s like to hear these three words rather than on Angelina Jolie.

Another Mother’s Day has come and gone, as has yet another Susan G. Komen Race for the Cure® event at the Mall of America in Bloomington, Minnesota; and here I am feeling compelled to write about it once again.

Before going any further, it’s important to acknowledge, that my “beef” with this organization is not with the walkers/racers. It is not with the local chapters themselves. It is not with the hard working individuals on the ground doing the work and raising the money.

It’s with the leadership at the top – the very top.

For the past three Mother’s Days when I watched the evening news covering this now traditional Mother’s Day event, I have found myself becoming more and more annoyed by all that smiling being done by the news anchors as they reported on this now annual make-you-feel-good event of the day.

All that smiling only adds to the confusion and the misleading, which I’m getting to…

This year I finally realized I feel so aggravated by this annual event and all that smiling because for me, it feels like a double exploitation. I not only feel as if the disease of breast cancer has been exploited here, I also feel as if Mother’s Day has been as well. When I think of breast cancer and the fact that I no longer have a mother on Mother’s Day because of breast cancer, I don’t feel like smiling. And when I think of Susan G. Komen®, I do not feel like smiling. Instead, it feels more like Komen is rubbing salt in my wounds.

The reason I decided to go ahead with this particular post on this topic is because Nancy Brinker “made me do it.”

As many of you know already, recently it was announced all over social media and elsewhere that Nancy Brinker received a 64% pay increase; must be nice, right?

Three words immediately popped into my mind as I started writing this piece – arrogance, misleading and out-of-touch.

Allow me to elaborate just a bit.

Arrogance

It’s beyond my comprehension how Ms. Brinker could even contemplate giving herself a raise at all this year, much less such a huge one. Generally, big raises are given for stellar, or at least good, performance. Does she not remember the Planned Parenthood fiasco? Does she not read about the declining number of participants in Komen events? Does she not pay attention to social media chatter about dissatisfaction with her organization? Does she not care how this looks? And wasn’t she supposed to have resigned from her CEO position last year anyway?

Here’s a good visual from The Sarcastic Boob about the 64%. It says a lot doesn’t it?

If I were Ms. Brinker, I’d be lying low and definitely not raising my own salary. This blatant disregard for shifting public sentiment, smacks of arrogance in my book. What else could explain it?

Misleading

Some information which Komen has used and continues to use/promote is just that – misleading. This organization seems to cling to over simplified and therefore sometimes misleading information. Here is an earlier well-written piece, The real scandal:  science denialism at Susan G. Kome for the Cure®. It caused quite a stir. Follow the trail to this follow-up piece called, Susan G. Komen (for the Cure) Still Overselling Mammography.

In case you missed it, author Peggy Orenstein has written an in-depth must-read piece about the failings of Our Feel-Good War on Breast Cancer. 

The bottom line here is when you are the leading (self-proclaimed) breast cancer charitable organization, shouldn’t one of your primary goals be embracing and then sharing the latest proven scientific data/information?

Out-of-touch

When you think about it, this one goes hand in hand with the other two doesn’t it? The Komen organization appears to be out-of-touch with what most people really expect (and maybe think they’re presently getting) from the leading (again, self-proclaimed) charitable breast cancer organization out there.

What do most people want?

It’s really pretty simple IMO.

They’d like to see this organization make an entrance into the twenty-first century, offer more inclusiveness regarding the metastatic and inflammatory breast cancer communities and come up with a more balanced (more dollars for research) fiscal pie chart.

Here’s an analysis by fellow blogger Knot Telling about how that pie is presently divvied up. Do click here to take a look.

The fiscal pie issue really all boils down to one simple question.

When an organization is (or is it was?) supposedly all about cure, which will only come through research, is 80% of the money raked in being spent on other stuff acceptable?

I don’t think so.

What about you?

Okay, now I’m done. Again.

Important Note:  Interestingly, Susan G. Komen no longer refers to itself as Susan G. Komen for the Cure® on its site’s home page. (The “for the Cure” part has been removed). However, elsewhere it still does. Does this organization want it both ways?

In case you’re up to reading more:

Are We Really Racing for a Cure?

It’s Just A Little Bottle of Perfume, Or Is It?

Komen & Change At the Top, Is It All About Timing?

No More Apoligies

Rumblings & Grumbling, My Response to Ms. Brinker

Susan G. Komen for the Cure, Planned Parenthood and A Tidal Wave

How do you feel about all these races, especially the ones taking place on Mother’s Day?

What charitable breast cancer organizations do you support?

Of course I had two grandmothers. My dad’s mother is not a face I remember well, as she died when I was very young. I may not remember her face very well, or even much about her at all, but I do remember her hair. I caught her brushing it once. Even at my young age, seeing it undone and falling loose from its usual pinned up bun style I was awestruck, embarrassed and maybe even a bit afraid thinking that I was going to get into trouble for disturbing such a private ritual. I remember how she just smiled and kept on brushing it as if she hadn’t noticed me staring.

My other grandmother I do remember well and one thing I remember most about her is all the dishes she had, including sets of lovely hand painted cups and saucers used for special coffee times.

My grandmother was the first to introduce me to the pleasure of drinking a good cup of coffee. Some of my fondest memories are of us sitting around her kitchen table sipping coffee. Of course, usually there would be cookies or pie as well. At her house there was always morning coffee time, afternoon coffee time and sometimes evening coffee time as well. These were rituals everyone who came to her house followed.

There are many things I remember about my grandmother, but what I remember most is the gift of unconditional love she always offered her grandchildren. She never spoke ill of any of us, even though we were of course far from perfect. The thing is, she wouldn’t allow anyone else to either, not while in her presence anyway. She would immediately come to our defense if someone said anything bad about any of us. We could always count on her unwavering support and I think this made us all work harder at not disappointing her. We wanted to be as good as she thought we were, even though of course, we all knew we were not.

Sometimes I wonder how my grandmother would have felt had she known that all three of her daughters would someday face breast cancer, and then a granddaughter would as well. Not “defending” us or being able to keep us from harm would have been really hard for her. Had she been around, her support through cancer would have been unwavering as well.

On every day, but especially as Mother’s Day approaches, I remember my mother of course, but I also think about how fortunate I was to grow up with a grandmother like that. I know cancer robs many families of this very thing, the unconditional love of a grandmother. I’m grateful my children knew their grandmother and felt that special kind of love. I’m grateful they have another grandmother around and can feel it still.

Here’s wishing a happy Mother’s Day to all women who love and nurture children.

And you don’t have to be, or ever have been, a mother to do that.

Do you have a memory about a grandmother or another important woman in your life to share?

What are your Mother’s Day plans?

I think I’m actually going to start using this lovely set!

For people like myself (the non-athletic type), signing up for any type of group exercise program is no easy thing to convince yourself to do.

When I was a kid, I loathed phyed class and literally jumped for joy when I was no longer required to take one. Luckily, all through my school days, I had loyal friends who kindly chose me to me on their teams. I avoided participating in sports then. I still do.

This does not mean I do not exercise. Heck, three years ago, days before my bilateral mastectomy, I participated in a 10K during the Fargo Marathon event. To this day, I’m not quite sure how I pulled that one off so close to my surgery. I crossed the finish line again a year later.

These days, mostly, I’m a walker. I walk my dogs or I walk on my treadmill.

But back to Livestrong…

I am not a fan of Lance Armstrong. I’ve never really had any opinions about the guy. I don’t care about his sport. I don’t care about his marriage breakup or the time he spent dating Sheryl Crow. I don’t care much about his Tour de France records standing or falling. I did not watch his interview with Oprah. I just don’t and never have formulated opinions about him or what he does/does not do.

Does the fact he disappointed so many people who do care about these things matter?

Sure it does; disappointing people is always tough for those on both sides of the disappointment aisle.

Last winter when all the stuff about Lance was going down, a family member said to me, “Well of course, all the cancer survivors are standing behind Livestrong.”

Well, why not?

I stand behind Livestrong as well. I can easily separate Lance Armstrong the man from Livestrong, the foundation he began.

One thing I can say with the utmost certainty is that the free YMCA Livestrong exercise program for cancer survivors was a genuine gift for me which I was (and still am) very grateful to have received. Every other cancer survivor participant I have spoken with has said the same.

After a cancer diagnosis, during treatment and for a long time after (if you’re lucky enough to have an after treatment time), a person is very often weakened not only emotionally, but physically as well. I know I was and still am. Treatments can knock a person down. For me personally my stamina, range of motion, flexibility and weight have all been dramatically affected.

The Livestrong program recognizes this knock down that the body takes following a diagnosis, but not in a condescending let’s feel sorry for the cancer people kind of way.

The instructors, at least mine, treated every participant with exceptional “normal-ness”.

My class had a team of floating instructors who gave each participant individualized advice, instruction, and encouragement. They pushed, but not too hard. They encouraged, but not in a patronizing manner. They offered instruction without pressure to perform in any certain way. They accepted each person’s ability level without judging. They offered compassion without pity. They were just really nice and more importantly,  genuinely helpful in trying to help each participant achieve her/his personal goals.

At my pre-admittance to the program interview, I also was given two binders generously filled with useful information about cancer and cancer resources. I was a bit past the need for this, but still have found them to be useful and informative. It’s nice to have these guides handed to you all nicely organized and ready to use. They are another perk of this program for sure.

If you decide to take advantage of this wonderful program in your community, before beginning you will need permission from your oncologist, or some doctor, to participate. You will be given a brief evaluation (not threatening at all and no scale involved!) of your physical abilities so your progress can be tracked. You will fill out a few forms. You will be asked a few general questions about your cancer and such.

Here’s the really great part – you will not be charged anything at all! This program is completely free.

Also, while participating in the Livestrong program not only do you get to take this class for free, you and all of family members living with you; get to use the entire YMCA facility free of charge for four whole months.

How great is that?

This commitment alone speaks volumes about Livestrong, the organization.

When your twelve-week class ends, once again there will be the follow-up forms, evaluations and maybe even a party! It’s fun to see proof on paper that you actually have improved.

Unfortunately, another observation I must also share is that my class slowly dwindled in numbers. This was due mostly to the nature of cancer. Several participants had to pull out and return to vigorous treatment regimens.

Such is life in Cancer Land.

It’s also worth noting that each week stories were shared and friendships developed. We did more than just exercise together; we listened to and cared about one another.

As for my own personal fitness goals, admittedly gains I made were very small. The scale numbers didn’t shift much in the right direction either. But that’s okay.

Small steps count too.

So, if you have ever thought about participating in your local YMCA’s Livestrong program, go ahead and sign up. You won’t be sorry you did! For more information, click here.

Finally, in case any of my wonderful Livestrong instructors are reading, I want to say thank you. You guys and this program are great!

Have you ever participated in the Livestrong program?

How has your body taken a “hit” physically post diagnosis?

What’s your favorite form of exercise?

Actually, the domino effect began in 2004 when my mother was diagnosed, but there are only so many dominoes one can keep track of, right?

This year the exact date (April 29^th) came and went very quietly. I’ve since been waiting for some profound words to pop into my head that I could eagerly share with you, but so far, nothing much is coming to me…

Where the heck is the great life lesson anyway?

This year I didn’t talk about that day; in fact, I didn’t even mention it in passing to dear hubby (and I don’t think he remembered, which, by the way,  is just fine with me). I’m not even entirely sure why I didn’t bring it up.

Did I think about my diagnosis this year on that date?

You bet I did, but I did so by myself.

It’s almost like I’m tiptoeing around now – trying to walk quietly through survivorship.

I’m sure this is partly because this is what’s now expected of me. I’m supposed to move on. I’m supposed to be done. I have and I am; sort of. But I will never be done. For more thoughts on why many who are diagnosed with breast cancer feel they are never done, read this post by friend and fellow blogger, Beth Gainer – Calling the Shots.

Will I feel less apprehensive when I reach four years out, then five, then dare I say it, ten or more?

Probably; at least I hope so.

But this is Cancer Land.

My mother’s cancer recurred at 3.75 years post her diagnosis. Maybe this is why I tiptoe.

My friend and fellow blogger Jody, of Women With Cancer, was diagnosed with metastatic breast cancer merely days ago – fifteen years after her initial diagnosis. Yes, I said fifteen years! Maybe this is why I tiptoe.

Approximately 155,000 Americans are presently living with metastatic breast cancer and some 70,000 more are being “inducted” into this community every year. This is despite so much focus on awareness and all the pink hoopla. Maybe this is why I tiptoe.

There are still roughly 40,000 deaths due to metastatic breast cancer annually in the United States alone and close to half a million world-wide. Maybe this is why I tiptoe.

I do not live in fear.

I will not live in fear.

While it’s certainly true, each minute that passes since that day means there is more distance between then and now; admittedly, it’s also true that I still feel more than a bit wounded. I still live with the reality things can change in an instant.

Really, we all do though, right? Cancer or no cancer, life offers no guarantees to anyone.

I am more than content and very grateful to keep on tiptoeing.

Have you noticed a domino effect since your diagnosis?

Do you ever feel as if you are “tiptoeing through survivorship”?

I’d much rather just be tiptoeing through the tulips…

I know this expectation is out there because this very thing was actually the topic of a support group meeting I attended a while back. (I go to more than one, so there’s anonymity here).

At the meeting we went around the table and each person was supposed to state how she was now a better person post cancer diagnosis. Immediately upon hearing that request, I felt uncomfortable and began fidgeting in my chair.

When my turn came, I couldn’t help myself. I went ahead and stated that I don’t think I am a better person post cancer diagnosis because well, I’m not.

Everyone just sort of gave me one of those looks.

You know the look, the one that says; well that’s not how you’re supposed to do cancer.

If truth be told, in some ways I’ve gone the opposite direction.

Physically, this is true without a doubt. My body has taken a dramatic hit in too many ways to count. My stamina has taken a hit; so has my strength, range of motion, weight, bone health, body image and hair, to name a few more.

Aside from the physical, among other things, I might very well be less patient, less willing to conform, more easily distracted and far too  more opinionated.

I’m not the same person in many ways, but yet I am.

After my response, someone sitting next to me at that meeting then said to me, “Well, it must be nice to have always been such a good person.”

I’m not entirely sure what she meant by that, but I’m pretty sure it wasn’t a compliment…clearly we were not on the same page, or even in the same “book”.

And that’s fine.

I love and just had to share this video interview with Barbara Ehrenreich in which she does the exact opposite thing we did at that meeting. She admits to very possibly being nastier after her breast cancer diagnosis. It’s really funny and she makes some very valid points. (I still need to get my hands on her book, Bright-Sided)

I never was a nasty person and I certainly don’t think I am now, or at least I try not to be.

Three years ago before cancer, I like to think I was a decent human being trying to do the right things, most days any way. I still try to live that way.

For the most part, I think people are not all that different after a diagnosis than they were before.

Sure, big changes come as a result of a diagnosis; we learn, we grow, we adapt, but deep down does the core of who you were/are change all that much? Probably not.

And without a diagnosis, a person still (hopefully) learns, grows and adapts don’t they?

Before cancer, some people are saint-like, some people are jerks and most are somewhere in between.

The same is true after a diagnosis.

Cancer doesn’t necessarily transform a person into a new and improved version of oneself.

The thing about this unspoken expectation is that it insinuates there should be some great life lesson to learn from having cancer. It implies there should be some great epiphany or sudden enlightenment about the meaning of life or whatever. Maybe there is, but maybe there isn’t.

In my mind, this borders on the cancer is a gift thinking which frankly, is beyond my comprehension.

It’s true, that after any life-changing experience, one does have a greater appreciation for life in general, or for the fragility of it at least. Many attest to being more compassionate, less judgmental and more willing to reach out to others following a diagnosis. I like to think I am as well. Who doesn’t?

There’s nothing like a life/death wake up call to make you want to slow down, smell the roses, redefine your goals or whatever…

And it’s certainly true for many (me included) that after a cancer diagnosis things do change dramatically.

You can’t go back.

But to assume somehow because of cancer you become a better person…

Somehow this expectation feels like yet another cancer “obligation” one is supposed to fulfill and going even further, I think this expectation might even potentially be harmful to a person’s well-being.

Cancer doesn’t miraculously make you better, or worse for that matter.

You are who you are.

Cancer or no cancer, people are just people; all of us flawed living and learning each day as we go along.

Hopefully we all try to be the best person we can be each day. Hopefully today and every day, we all try to be a bit better than we were the day before.

I say, let’s not give cancer credit for that.

What about you?

Do you feel there is an unspoken expectation to be a new and improved version of yourself following a cancer (or any serious illness) diagnosis and if so, how do you react to that?

Do you feel you have changed for the better post-diagnosis?

Have you ever felt as if you were “doing cancer” (or any illness) wrong?

I didn’t until my friend and fellow blogger Beth, who writes a terrific blog called Calling the Shots, enlightened me about this fact via one of her fabulous poems. You can read it here.

I’ve always admired poets. They can say so much in just a few words. I’m actually working on this myself, not the poetry so much, but trying to be a bit less wordy in my writing when I can be.

This post is my contribution to National Poetry Month.

I’m pleased to share a poem written by another friend and fellow blogger who I greatly admire. Her name is Lois Hjelmstad. Lois is the author of Fine Black Lines:  Reflections on facing cancer, fear and loneliness. It’s a wonderful book. I highly recommend it.

I was fortunate enough to have Lois agree to write a guest post for me a while back called “Why I Did Not Choose Reconstruction”. If you missed it, do check it out; it’s well worth a read.

The following poem by Lois is one of my absolute favorites because it says so much to me about forced posititivy – a huge pet peeve of mine in Cancer Land.

Cancer or no cancer, I just know you will appreciate it too.

No Lifeguard on Duty

by Lois Tschetter Hjelmstad

It is difficult

when one is drowning

to wave to the people

on shore

one wants to be

friendly, of course,

but perhaps it is

more important 

to keep

swimming

Don’t you just love that? I surely do. 

Maybe someday I’ll even tackle writing a poem or two myself!

Have you ever felt like you were “drowning” due to too much “waving”?

What does this poem say to you?

If you’ve written a poem, please share it, or a link to it if you’d like.

Do you find yourself retreating?

Or do you find the opposite to be true and immediately turn to social media or others for additional information or support?

When I first learned of this horrible act of violence, I was busily tweeting away about the BRCA1 and 2 Gene Patent Case which was finally making its way to the U.S. Supreme Court.

Then I saw that first tweet about the bombings pass through the Twitter feed. It was merely minutes after the bombings had occurred – so swift, so incredibly soon.

After that first tweet, of course, many more immediately followed. The questioning, the seeking of more additional information and the speculating quickly began.

My reaction was quick as well.

I immediately stopped tweeting, while also perhaps selfishly realizing, that the gene patent Supreme Court hearings of that day would most definitely not be (and rightfully so) a prime time news story, or any story at all that day, nor any day soon.

The next thing I realized was that reading heart-wrenching tweets about such a tragic event entangled with other tweets, many about insignificant matters, suddenly felt very strange and then down-right impossible for me to do.

After a period of time, my reaction was to step away.

That was my reaction on December 14th as well; the day we all learned of the brutal shooting at Sandy Hook Elementary School. That day, too, after a time I turned off all social media. I turned off my computer. I “turned off interaction” with others, perhaps attempting to separate myself from the noise and heartache of it all.

This is my pattern. When I learn about disturbing news and have absorbed what I can, I pull back. I retreat for a time.

Though not at all the same thing or anywhere even remotely close to the same magnitude, I realize this was also true the day I learned I had cancer. I’m certainly not comparing the situations, but rather my reaction to them.

The day I learned of my diagnosis I was okay with, perhaps even preferred, to be alone with the quiet for a time. I needed to absorb and process by myself first.

I’m certainly not saying this is the right way, but it does seem to be my way.

I’m writing about this because it’s something worth thinking about. It’s perhaps important to think about how you initially handle highly distressing news of any kind. At the very least, it’s perhaps thought-provoking to reflect a bit on how you react or do not react. It’s helpful, or might be, to figure out what coping mechanisms work best for you.

Do you retreat for a period of time (like I seem to do) when you learn of horrible news? Or do you tend to do the exact opposite and immediately turn outward to as many others as you possibly can?

It seems I prefer the quiet.

What about you?

Do you have a pattern in how you initially react to horrible news of any kind?

Do you turn to social media or turn it off when disturbing news is unfolding?

Who hasn’t, right?

That’s how I’m feeling right about now.

Where do I want to be?

Breast Cancer Action is sponsoring a rally on the steps of the Supreme Court on Monday, April 15, 2013. I want to be there in person. I wish my voice could be part of the larger chorus there where others will be speaking out from those steps, but unfortunately, it’s not possible for me to attend.

My voice will have to be more like a quiet echo from here.

Is anyone listening?

I hope so because much is at stake here for us all.

On Monday, April 15, 2013, the U.S. Supreme Court will begin hearing oral arguments in a landmark case challenging Myriad Genetics’ patents on the “breast cancer genes.” A decision will perhaps come later this summer or fall.

The reason for this rally is to draw attention to this important issue.

This case matters to everyone.

I don’t wish to repeat myself, so you can read my latest articles covering the specifics a bit more here or here.

Okay, I’ll repeat myself just a bit because who clicks on all those links in a blog post, right?

Here are a few reasons why Myriad’s monopoly on gene patents is a bad idea:

• Myriad retains exclusive rights to all testing and research on BRCA1 and 2 genes. This means sharing of data and analysis is blocked, undermining further collaborative scientific research efforts.
• Myriad can keep testing costs high indefinitely. (And they have)
• Second opinions are impossible.
• The patents mean continued limited access/information for underserved populations.
• This monopoly creates a barrier standing in the way of further breast and ovarian cancer research.
• The idea that a human gene can be patented is flawed, sets a dangerous precedent and is just plain wrong.

This landmark case will not just impact those like me who carry the BRCA1 or 2 gene mutations, but all of us.

Why? (Click on this one for some good answers)

There’s a precedent to set or break here.

The argument basically comes down to one question, should human genes be patented?

The plaintiffs’ side says no. The opposing side (Myriad) says without patents there is no incentive for innovation.

A few other questions might be:

Should profits come before patients’ rights?

Is patenting human genes undermining advancement of personalized medicine?

And finally, is the future of personal healthcare for us all at stake here?

Again, I know I keep saying it, but this is a landmark case that affects my family directly today and some day soon might affect yours as well.

I’m hoping the Supreme Court sets things right.

What about you?

If you’d like to be part of the “echo”, read this for things you can do.

Have you ever attended a rally of any kind?

Do have an opinion on this particular case?