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Living a Year in Honor of Susan Niebur #WhyMommy

Susan speaking 2010 BlogHer NYC

I think of Susan daily.

And nightly. With every moon. Not only because she was an astrophysicist, but because the day she died, there was a glorious moon.

There will be many posts about Susan today. This one is less so about Susan herself, and more so about the impact Susan’s life — and death — had on me. Because I can say that both have changed the direction of my life forever. That is one thing we all strive for, isn’t it? To make an impact on someone’s life? I know Susan has impacted hundreds (more likely thousands) of lives, and I hope that she is smiling from above with that knowledge.

I carry with me the pain that I was never as good of a friend to Susan as I wanted to be, though Susan was always gracious to me, to the very, very end. In her final year, I was in a hellish stage of my marriage and my life, something I was not openly sharing with people at the time. I was stretched so thin emotionally that I was barely making it. So while I could text and email with Susan, I just couldn’t drive the distance to see her very often. I was barely able to pull it together to make sure there was a dinner plan for my own family, much less to get meals to Susan. When I could, I would send a contribution for take-out meals to the friends coordinating them. But attempting to provide comic relief through emails, texts and the occassional phone call was all I could manage in terms of “visiting,” and I always felt like that was far too little.

I also felt like I shouldn’t complain about my life to anyone, because what were my problems in comparison to Susan’s? Here she was dying, and yet she was still writing a book, being such a fabulous mother, attending conferences, and still found time to do things like send Christmas cards. Susan was simply awe-inspiring.

Part of my healing process in losing Susan, and in dealing with my guilt over not being able to do more for her, has been to honor Susan by attempting to be “more like Susan.” I have lived very intentionally over this past year, which is not to say that I have lived perfectly, but with more focus and purpose. Losing a friend (and I lost more than one last year) has a way of shaking you up and causing you to question your purpose on Earth, your priorities, and your very existence — all things I had discussed with Susan at various times. This year, all those things were at the very forefront of my mind.

I’d like to say that I was extremely organized about this process and wrote things out and was very Gretchen Rubin-esque in my process, but I wasn’t. It started out as a very reactionary part of the grieving process and then became a little more formal, but here are some of the elements of what my year of living intentionally and in honor of Susan included.

Recognize that Life Is Short

Life is finite. We don’t know how short, even those who have cancer and have been given a time frame don’t know for sure. Susan beat cancer many times. But life is a limited resource. Live life out loud, every day, and to the fullest. Today could be your last or it could be one of a million. Make it count. It’s a small thing, but I did one of my “bucket list” items — ride on a zipline — this year. Watch out world — shark cage diving is next…

But in all seriousness, that means that taking care that our words to each other are kind, and that we don’t squander our days doing things we don’t want to or need to do. Of course few of us want to do laundry, but we need to. But don’t do volunteer work you hate out of obligation. Don’t read books you don’t like unless you have to for homework! In other words, QUESTION EVERYTHING. Maybe you are doing something because you “have always done it this way,” but you don’t really need to? Or even need to do it at all? I became very sick with pneumonia this Christmas and it is amazing how many “traditions” got tossed out the window because I couldn’t sit upright — and how few of these the kids even noticed. Life is short. Do what is meaningful and important. Add in what is fun. Take away the rest.

Establish an “I Don’t Take Any Crap” Policy

Pardon the inelegant phrasing. I don’t know that Susan had such a policy, but I do know that she would establish boundaries when she needed to and I realized I did. This phrase comes from a friend tell me about how if a social or volunteer group gives her too much crap (grief) she quits participating because “it’s not my job so I’m not getting paid to put up with that!” I spent so much of my life being a peacemaker, I would make myself unhappy trying to make everyone else happy. I don’t do that any more. When people are unreasonable, I let them know that I have an “I Don’t Take Any Crap” policy and they basically have the opportunity to get on board or get left behind in the dust. I no longer twist myself in knots wondering why the people who are unkind to me don’t like me. I do a quick internal inventory to see if I’ve done anything to be unkind or inappropriate and unless I have (in which case I try to make amends), I move on. It’s amazing how much happier I am.

Open Up and Be Vulnerable

In this past year, I opened myself up to be a little more vulnerable and let more people in. Susan shared with the world her joys and her heartbreaks. Her hopes and her fears. Susan lived fiercely and out loud. After covering up for a quite some time that my husband and I were struggling in our marriage, I stunned everyone in October by posting a very forthright post on my personal Facebook page that we were going through a trial separation and asking for everyone’s prayers and support (for all four of us) during that time. I received an incredible amount (more than 100) of encouraging responses to that post, as well as private messages, emails and phone calls. I received only two negative responses and I’m sure there were some silent, non-responses that weren’t favorable, but overall the amount of support was frankly, overwhelming. I heard from people I never expected to hear from and couldn’t believe how supportive people were. It was terrifying to post, but it was the only way I knew to rip the Band-Aid off and not have to explain over and over again why I couldn’t do certain things (volunteer for a billion things, etc.) or why certain things were happening (i.e. why my husband’s car was going to be parked in front of a neighbor’s house). The unintended yet wonderful outcome was that it made some women who were going through similar experiences feel like it was okay to talk about it. Which has always been one of my guiding principles — to help people talk about things and feel safe about it.  Susan made me feel like it was okay to be “real” online and in turn, I apparently helped a few others feel like they could talk about what was going on with their families. Thank you, Susan. I must say, there is nothing like baring your soul like that to find out who is really your friend and who is not. (And if you missed the previous post, JavaDad and I are back together, and yes, the Take No Crap policy helped with that!)

Make Time for “Soap Bubbles on a Summer Afternoon”

In the past year, as I have worked on establishing boundaries, I’ve kept this part of Pinterest’s interview with Susan in mind.

Finally, we talk a lot about inspirations on Pinterest and you’re a role model for finding beauty and joy in life no matter what happens – what are your top “little things that count”?

Thank you!

Children’s laughter. Soap bubbles on a summer afternoon.  Reading books together in an easy chair.  Family meals.  Cuddling.  Taking time for a night out with friends — even when there is other work to be done.  Stargazing or watching the clouds pass by. Asking a child a question, and listening — really listening — to her answer.

Although Susan worked hard, she understood the importance of play, as well. Having had the pleasure of working with author and cultural anthropologist Dr. Cynthia J. Smith earlier in my career, I know that there are many, many benefits for ADULTS in “play.” I simply allowed myself to push it too low on my priority list for too long. I remember a day in February about a week after her memorial service when it was unusually warm and sunny and though the kids had a million commitments, I cancelled everything and said, “We’re going to play outside and enjoy this day.” That was in honor of Susan. Because typically I would’ve said, “Oh, what a shame it’s a gorgeous day and we have all these other things to do.”

Many times I’ve caught myself with hands stuck to a keyboard or touch device and realized I need to stop and reconnect with the kids. And I try to focus on the “really listening” to my children — because they have AWESOME answers. These have always been principles of mine, but Susan was always better about keeping these front and center than I was, so I try to channel my “inner Susan” to be a better mother. Susan always had cancer in the time I knew her and basically since her second was born (she was diagnosed not long afterward), so I never asked and I’m not sure if she’d know the answer, if her ability to focus on her kids had to do with knowing that she had cancer and that time was precious or not. But, as we know, none of us really know how much time we have on Earth, so I’m trying to live as if each day with my kids is precious. This year it has been amazing to me to see just how many “forces” I have to fight off that try to get me to change that priority.

Spend Time with Girlfriends

As Susan said in her quote above, we need to make time to see friends. I lost another friend shortly after Susan. My very first friend in Northern Virginia, Julie Ingram Tryon. Yet another friend with whom I traded far too many, “We need to get together soon”s with. Her birthday would’ve been this week. Julie was also an amazing woman and I’m sure she and Susan would’ve got along famously. She was gone mere weeks after I found out she had pancreatic cancer.

It is so easy for us to get “too busy” to see each other. Yes, men need to see their friends too. And we need friends of both genders. But I can tell you that there is something very special about the bond between girlfriends. I could not have gotten through this past year without girlfriends and I know that there are some girlfriends who needed me very much this year. Because I was able to (and more willing) to be more honest with them about what was going on in my life, I was able to (and more willing) to be there for them with what has been going on in their lives. Our friendships have been even deeper and more meaningful. I have been able to say to a friend, “It sounds like you need a friend, my house is a wreck, I have a deadline, but why don’t you come over at least for an hour?” When we are volunteering together for something and working hard, I’ve become the social coordinator, the one who says, “okay, who is up for drinks afterwards?” And at first everyone says, “Oh, I have to go to the grocery story” or “But it’s a school night” and similar things, but eventually, several of us gather and we discover we all really needed it.  We needed to connect, to share our joys and concerns, to do more than the school-pick-up-smile-and-wave. Facebook is great, but real-life friendship is better.

I wish I could see Susan today. I miss her a lot. I want to go up to her and throw my arms around her (oh how many times I had to be careful not to squish her when she was feeling fragile) and say, “Susan, I am a stronger and a happier woman because of you. I am a better mother and wife because of all that you taught me. And because I’m willing to share honestly what’s going on in my life, I have the strength and energy to be a better friend.” I cannot ever presume to speak for her. Please don’t ever interpret anything I say as speaking for Susan. All I can do is to try to apply what I’ve learned from Susan and hope to be the kind of person she would have kept around as a friend had she remained walking around on Earth today. She was a friend, a mentor, and a role model. With a beautiful smile and a wonderful laugh!

I have a long way to go in measuring up to being anything close to Susan, but she’s on my mind and in my heart every day. I consider our friendship ongoing and my faith allows me to believe that one day I will see her again and perhaps she will know that where I fell short as a friend to her in life, I tried to make up for afterward. We shared a passion for STEM and getting kids excited about it, and I think of her every time I volunteer in that area. I try to promote her cause — bringing awareness to Inflammatory Breast Cancer — the breast cancer without a lump, whenever I can. If you loved Susan and all the good that she brought to this world, please consider helping spread the word about this disease and the work of the Inflammatory Breast Cancer Research Foundation. If you are able to make a donation, that would be wonderful. Let’s try not to let another wonderful woman be stolen away by that terrible thief, cancer.

Please join bloggers throughout the web in honoring Susan Niebur’s life and contributions with a post, and please add your link below.

Goodbye Susan — For Now

The long strand of white Chinese freshwater pearls I wore to her memorial mass/celebration of life are still on the dresser in the front hallway where I tossed them the second I came home. The purple carnations I bought a week before her death because of their bright hue and their lunar name, “Howl at the Moon,” stand at attention in the crystal vase on the console table, cruelly taunting me with their chirpiness. The deep purple manicure I got three weeks ago along with the other TheDCMoms.com bloggers in her honor and in an attempt to brighten her days in bed, finally needed attention. I cried softly as the manicurist took it off, just as I did when she put it on. Three weeks ago, with every stroke of the lacquer on my nails, I knew this would probably be the first, last, and only time I would wear purple nail polish. I knew in my heart time was running out.

Susan is gone.

 

She fought a valiant fight against what I consider to be a particularly vicious form of cancer — inflammatory breast cancer (“the one without a lump”). So hard, so long, and so well that almost to the end many of us thought she was going to rebound and make it for a while longer. Or as she told me two weeks before the end, that she was just “regrouping.” But there comes a point when you know it is time to say goodbye.  I am eternally grateful to both Susan and her family for allowing me the time to do so while she was alive.

I must pause to say that I’ve been reminded that Susan did not “lose her battle with cancer.” Susan lived longer than expected, and she lived the heck out of every single day. She kicked cancer up and down and back again. It may have ultimately claimed her life, but cancer won nothing.

beautiful moon

This is the gorgeous moon that rose over the Metro DC area on the evening of Susan's passing, as captured by our mutual friend Robin (@noteverstill). Her blog is The Not-Ever-Still Life: http://noteverstill.blogspot.com/

Susan is gone. But she is not. She is here. I run into her almost everywhere I go. The evening of the day she passed, her many, many friends were amazed by the glorious moon that rose early and put on a brilliant show. Only to be followed by a gorgeous Snow Moon the night of the visitation. So many of us felt like it was a sign, like she was just smiling her very radiant smile from heaven via the moon, saying, “See, I told you, it’s going to be okay.”

I’ve written more than once about how much Susan inspired me (and continues to do so).  There are so many people who have written so beautifully about Susan that I am not even going to try to sum up her life any better than they have. (See JeanAmyRobin… )

I have written and deleted this post several times. Should it be a tribute? A summary of a friendship? An accounting of events? Finally, I’ve decided to simply share a story.

When the Junior League of Northern Virginia was holding a fundraiser to raise money for The Children’s Science Center and put out the call for a Celebrity Scientist, I turned to Susan. Would she be willing to share her story of how museums helped shape her career? Susan, being so Susan, answered that she would be delighted.

Sadly, it turned out to be a day when she was in pain.  The cancer had returned, she just didn’t know it yet. I had begged her not to come if she was in pain, telling her we’d make do, but she came anyway. Because that was Susan. She’d fight through pain to do a favor for a friend and to do something she thought was important.

March 6, 2010 Dr. Susan Niebur presenting at the Junior League of Northern Virginia's STEM Awareness Day

Dr. Susan Niebur speaking as a "Celebrity Scientist" at the Junior League of Northern Virginia's STEM Awareness Day, an event to raise awareness about the need and raise funds for a Children's Science Center in Northern Virginia. Susan's touching story about how a visit to a museum at the age of three touched the hearts of many people in the audience. (March 6, 2010, photo is my own.)

Without anyone else knowing the pain she was in, she stood behind that podium and shared a story that people still talk about today. Her parents had taken her to a museum in Galveston, TX when she was three years old. After looking at all the astronaut suits, she looked up at her mother and asked, “Mommy, why aren’t there any GIRL astronauts?” To which her mother replied, “I’m not sure.” At the end of the exhibit, you could write a question on a card and drop it into a box, and Susan decided to ask NASA why girls weren’t astronauts, too. And at the tender age of three, she decided that she was going to grow up and work for NASA. And she did.

It was this story I shared with her mother at the visitation, and her mother says she vividly remembered that day. I wanted to share it with her, mother to mother, to let her know just how much that moment in time meant to Susan. Sometimes, as mothers, we forget just how precious those trips to a museum, a library or a zoo can mean. They can literally change a child’s life. Somehow I just wanted to give her mother a piece of her daughter back with that story. A memory of Susan as a little girl. Her father told us, “We taught her how to read at three and then she didn’t need us again!” Oh how, that sounds like Susan. And frankly, like my JavaGirl.

I credit Susan’s story with the success of the fundraiser that night. But I also credit it with planting a seed in my mind that though my son is the one who exhibits the most interest in science, that I need to be sure that I take equal time to foster it in my daughter. It’s not that I didn’t know this was important, it’s just that in the hubbub of parenting, it is so easy to lose sight of things. JavaBoy already wants to be a chemist. JavaGirl currently wants to be a horseback rescue rider. JavaBoy sees everything through science-filtered eyes, whereas I have to work at it just a little more with JavaGirl. She enjoys science, it’s just I have to remember to include her because she doesn’t have a single-minded focus like her brother.

Mere days after Susan’s funeral, we were at the National Air and Space Museum’s Udvar-Hazy Center in Dulles, where I was proud to see the Museum Without Walls partnership between the Junior League and the Children’s Science Center in action on a Super Science Saturday — kids were trying out mobile exhibits with a glee that I know would’ve brought out Susan’s brilliant smile. The Children’s Science Center is still raising money toward a goal of a future permanent building, but now has traveling exhibits it takes to schools and fairs. From there we walked over to the space exhibit, and I took JavaGirl by the hand to show her an astronaut suit in a glass case and explain to her “Miss Susan’s” story.

JavaGirl contemplates an astronaut suit

JavaGirl at the National Air and Space Museum Udvar-Hazy Center just a couple of years older than Susan was when she made that life-changing trip to a museum in Texas. (Photo is my own.)

“You see, when Miss Susan and I were little girls, there weren’t any women astronauts. But now there are. Miss Susan thought it was very important to have more women in science, so not only did she study very hard to be a scientist who worked at NASA, but she worked to make it better for other women to work in science, too. I want you to know that you can be anything you want to be, honey. And that includes being a scientist.”

We walked by an exhibit about exploration on Mars and I said that I knew that Susan was involved with that but that I didn’t know all the details — the kids were pounding me with questions. I was already regretting not having had enough time to ask Susan all the questions I would’ve liked to. When I spoke with Susan about science, it was usually more on the kid level, rather than delving into her career. It had always been my intention to get her together with my kids for a career discussion — she had met them once, but all our kids played while the adults talked — but the timing never worked out. I’m hoping some of Susan’s Women in Planetary Science friends will help me fill in some of the gaps.

At the end of a long day, after she was in her pajamas, JavaGirl came into my room and said, “Mommy, before I go to bed, I would like you to talk to me some more about Miss Susan and science.” I fought back my tears — mixed sadness over losing Susan and joy over a little girl’s interest — and we talked some more.

The next day, while working with JavaBoy on his science fair project for school, I turned to JavaGirl (kindergarten) and said, “Would you like to do a science fair project, too?” She practically leapt out of her chair with excitement. “Yes! I’m going to be like Miss Susan, except I’m going to be the first girl to do experiments!” (Okay, we still have some history work to do.)

We’ve spent the past several days working on the kids’ science fair projects, and I could swear I’ve heard Susan laughing from heaven a few times, like when I called the chemistry department at George Mason to ask a grad student to explain some unexpected results to JavaBoy, or when JavaGirl came up with zillions of questions of her own. I wore my IBC Research pin to the Discover Engineering Family Day both in the hopes it would open up a conversation with someone, and in a way, to “bring” Susan with me to a day I think she would’ve immensely enjoyed. Seeing so many kids enjoying STEM activities, such as building Lego structures and testing them out in a tsunami wave machine. No matter what the specific discipline, Susan encouraged intellectual curiosity in children (and people) of all ages. I just pictured her standing there, with that broad smile on her face, saying, “COOL!” And wouldn’t  you know it, the “prize” for completing your passport for visiting several booths was a chance to sit and talk to an astronaut.

Susan is gone. But she’s still here. Forever in my heart, my memory, and yes, I believe watching us from above. At times, giggling.

Susan, you are an inspiration always, in so many ways. There are many ways I could have been a better friend to you, but know that I could never have asked for a better friend than you. I miss you.

I have made a donation in her memory to the Inflammatory Breast Cancer Research Foundation. Please consider doing the same or making a difference to the charity of your choice. Unless otherwise noted, all photos are my own.

Of Friendship and Love and Why Cancer Is a Terrible Thief

MomzShare

Teach Mama, Susan Niebur, myself, and Parentopia Devra at a MomzShare event that raised money for the American Cancer Society. I don't know who took this photo with my camera in order to give them credit.

I really wanted to call this “Cancer Sucks” — a button I’ve seen before, but I’m trying to remember that I expect my children to use better adjectives when they want to resort to colorful language. Forgive me if the parent — and mature adult in me — lapses from time to time during this post.

Cancer really is a thief who robs us — all of us — not only of friends and cherished family members but robs society of so many valuable people. I’m not going to make this a post about statistics. There are so many posts about statistics. I’m just going to say the numbers are way too high and it affects the very, very young, the kinda young, the middle-aged, the lived-some-but-not-enough, and yes, even those who have “lived a good live and are ready to go.” But it’s a terrible way to go. For anyone.

There are so many people I know who have been afflicted that I can’t even keep track of them all. A childhood friend of mine died from it so fast that she was dead before I knew she had cancer. Another friend posted a status on Facebook that she was cancer-free for a year and I didn’t know she had it. I have friends who have been in remission and have it yet again. And sadly, a friend who has chronicled and amazing journey of surviving cancer four times but is currently receiving hospice care as she fights metastatic breast cancer in her spine, neck, ribs, and hips.  If you read my blog or Facebook regularly at all, you know I am talking about my friend, Dr. Susan Niebur, a blogger, mother, and astrophysicist.

I cannot answer for you any questions about “what does this mean” that she is receiving hospice care.  She calls it regrouping. I have done my own share of mental gymnastics around the word hospice and you’ll have to do your own. Susan has done her share of miraculous rallying in the past. What I will say is that many of us are putting together photos into a video for Susan — for encouragement, laughter, and love and we invite anyone who has any way felt touched by Susan and her story (stories?) to contribute. Amy of TeachMama has already written it up and is putting it together so I will simply link to her post.  Just know that it doesn’t have to be fancy — a photo, with your caption added or emailed in or you holding a piece of paper in your photo is all you need.  The photo doesn’t even have to be of a person/face.  It can be a drawing, a piece of artwork.

With so many people coping with cancer, why does Susan garner so much love and attention?

Because she’s so inspirational in so many ways.

As a friend, Susan is “geographically undesirable.” I don’t get to see her very often, in fact, mostly at blogging conferences. And I’ve been a really terrible friend in terms of phone calls and emails because my own personal life has been a bit chaotic in recent months. And yet, Susan is ever-present in my life and always finding a way to touch and inspire me in some way — sometimes directly, sometimes indirectly. I’m not the only one who says that — she has that effect on nearly everyone she meets. But what is more amazing is that she is so multi-faceted that she impacts you in more than one facet of your life.

As a Writer/Speaker/Media Superstar

Susan blogs as WhyMommy at her own blog, Toddler Planet.  Then she’s a regular contributor to the Women in Planetary Science blog where in 2010-2011 she conducted 40 of the planned 51 interviews of women in planetary science WHILE fighting cancer. And is one of the 20 women of the Mothers with Cancer blog. And spoke at Blogalicious 2011 despite being in the middle of chemo therapy. Throughout her battle with cancer she has continue to write numerous scientific papers, work on a book about her career with NASA, present scientific papers at conferences with lofty sounding names and is an active speaker on the social media circuit. She makes me feel lazy as a writer. She is inspirational without fighting cancer, but that she does it while fighting cancer just ratchets everything up by a factor of a million. (She might correct my math there.)

As a Mother

Yes, all mothers get tired. All mothers run out of ideas. All mothers sometimes just wish the kids would stop asking questions. But the way she cherishes her children recharges my maternal batteries and makes me go hug my kids, sometimes even when they are asleep, and makes me think that if Susan can be that good of a mother “even if…” (it’s been a bad day at chemo therapy for… the future seems uncertain, she’s in pain that day…) then certainly I can be a good mother no matter what challenges I face. And sometimes she also inspires me to work in a little more science, technology, engineering, or math (STEM) into our day.

As an Advocate

I’ve always believed in volunteering.  But Susan has taught me so much about how to choose wisely with how you support an important cause. About “pinkwashing” and that you have to go far beyond “awareness” to actual action. That it is not just enough to TALK about breast cancer but to actually DO something, like she did when she brought partners together to make lymphedema sleeves available to those who could not afford them. And how Facebook memes can sometimes hurt the very people they were meant to help.

As a Christian

Despite “prayer” being in the name of my blog, I don’t discuss my faith much here, but I have a lot of it and yes, I am a Christian. Susan has shared thoughts about faith from time to time and one blog post in particular really struck me and I think about it often — about the life being unfair and yet God keeping his promises. One phrase people use to describe Susan repeatedly is “full of grace” and I think if you read this post, you’ll see why.

As a Friend

No matter what she is going through, Susan remembers to congratulate others on their achievements, reach out to those going through rough times, and share a hearty laugh.  Is she perfect, oh goodness, no — none of us are. Sure, I’ve seen the pain make her cross. (And she’ll probably wince if she ever sees that line – she doesn’t like to be cross.) But she’s awfully close to being perfect. She makes the rest of us strive to be better in so many ways. She forgives me when I go weeks without contact and welcomes my intrusions into her busy life when with all my loud Ariesness I come charging in with my overwhelming boisterous love trying not to crush her fragile body with a hug and my loud laughs. She encourages my clumsy attempts at science with my children. And she is responsive to her many, many, many readers everywhere she writes despite her need to conserve her energy.

Susan is one of the many, many people cancer is robbing this world of. I beg you, in her honor, please go sign up for Avon’s Army of Women today, or find another active way to participate in research or contribute to the funding of research for a cure to cancer. Susan’s cancer is inflammatory breast cancer — a kind that “kills without a lump” but if you choose to advocate about a different kind, that’s fine, too. It all needs to GO.

 

 

Team WhyMommy Virtual Science Fair

There was a point in our lives when we were ALL scientists. We couldn’t help ourselves, we were born with a natural sense of curiosity and would investigate anything our minds and hearts desired. And then someone put the label SCIENCE on it and maybe some boring teacher droned on endlessly on it in a classroom or subjected us to a poorly written text book and that curiosity was drilled right out of us.

And then, if you are really lucky, you’ll meet someone in your life again like Dr. Susan Niebur (or like me, you’ll meet her as her alternate identity, “WhyMommy” and not realize for the longest time that her real-life identity is an ASTROPHYSICIST) and she may re-ignite your love of science.

I actually met Susan in an alternate world — seriously — in 2007. We “sat” near each other in a “conference room” at a BlogHer Conference  in Second Life, a online 3D world.  From that virtual world, we watched a live stream of the conference that was going on in real life in Chicago.  We typed a few words between each other and I think we even “danced” at a Second Life dance club and that was the last I thought I’d ever see of WhyMommy.  (That sounds far more tawdry than I mean for it to!)   I hadn’t even launched my blog yet and never thought I’d run into her again.  I looked at her site and it was then that I realized Susan was coping with a rare form of breast cancer called inflammatory breast cancer – a breast cancer that does not come with a telltale lump. 

Imagine my surpise a year later when I joined the DC Metro Moms Blog group and one of the first people I met at a real-life gathering was WhyMommy!  It took my mind mere seconds to connect the name with the person I had met in another world and I was so happy to see her looking so well — she had beaten the cancer!  Since then, I’ve seen Susan at a few other gatherings, and I was thrilled beyond belief when she agreed to come as a “Celebrity Scientist” to speak at a Junior League of Northern Virginia fundraiser to explain the important role museums, particularly those that allow kids to have hands-on experiences, play in children’s lives.  It was her moving speech about the impact of a museum visit at the tender age of 3 in shaping her ultimate career path to be a NASA astrophysicist that helped raise several thousand dollars for the Children’s Science Center.

And that’s what I love about Susan — her pure passion for science and her willingness to share it with anyone within earshot.  Unfortunately, that night she was also in pain.  A knot of pain in her back that was causing shockwaves of pain throughout her spine, which she found out only days later, was the sign of a re-occurrence of her cancer.  She fought through the pain to come to the fundraiser, and yet this pain quickly became the beginning of a new journey. 

Today Susan is having surgery to remove some nodes that are affected by the cancer — and I won’t even pretend that I can do a good job of explaining things, all I can say is that she has a scary journey ahead of her to fight the cancer once again.  And she’s the mother of two small kids.   And she has a ton of friends around her who wish they could take up the fight for her — but we can’t.  We feel helpless to do anything but keep saying encouraging words to her.

So there’s two things we’re doing today.  First — we’re going to encourage people to join the Avon Army of Women – a massive research project of ALL women — cancer-free, with cancer, cancer survivors.  Please go sign up, and then look for a study you can participate in sometime this year (new studies open up all the time).  Some are as simple as filling out a form.

Second, since Susan is NOT all about cancer, we are holding a virtual science fair!  Today, all over the blogosphere, Susan’s blogging friends are remembering how fun science can be — with our kids or even on our own.  As it happens, my son is having his Mad Science birthday party this week, so science is in the air in the Java household.  But today, in Susan’s honor, we played with magnets!

For the first experiment, we studied the laws of repulsion.  Take a toy car (it helps if it has wheels with a good bit of height) and strap a magnet on top with a rubber band.  Take another magnet and figure out which end has the opposite pole and because opposing poles repel rather than attract, you can make the car move forward simply by holding the magnet close to the back of the car.  (This is why you need a high wheelbase — so the rubberband doesn’t drag on the table).  JavaBoy thought this was “Coooool!”

The second experiment makes a great magic trick for an audience.  Drop a paper clip (make sure it is a metal, non-coated one!) into a glass of water, or if you are really coordinated, a water bottle.  Ask anyone if they know how to get it out without getting their hands wet or spilling any of the water. 

Then, whip out your handy magnet and run it along the side of your water container and you will be able to pull the paper clip right out of the water!  This is due to the laws of attraction — if you have a strong enough magnet, you can attract the paper clip to the magnet, even through glass and water.

You don’t have to be a NASA astrophysicist to appreciate science.  (You don’t even have to know one, although I recommend getting to know Susan, even if it is only through her blog!)  Go check out what some of Susan’s other friends are doing today and try some things out with your kids.  If you have a local science museum, plan a trip!  And if you don’t have one (like those of us in Northern Virginia – and that’s a post for another day), then find out what you can do to help bring one to the area!

Perhaps one day your little one will be the scientist who rids us of this awful disease called cancer. 

Susan — we’re all pulling  for you today!  I’m going a little heavier on the prayer than the caffeine!

Get Smart, Get Screened

If you knew how to prevent more than 4,000 women from dying from cancer this year, would you take action? By the end of this post, you’ll know the answer.  And this post is not just for women — men, I urge you to read this so you can be educated enough to make sure the women in your life (that means wives, DAUGHTERS, mothers, aunts, sisters, yes, even grandmothers, best friends — any woman in your life) are following the new health guidelines for screening and preventing cervical cancer.

January is National Cervical Cancer Awareness Month  and the Pearl of Wisdom Campaign to Prevent Cervical Cancer is helping spread the word via a web site and pearl pins it hopes women will buy and give to their friends as a way to open conversation and as a reminder of the steps needed to screen for and prevent cervical cancer.

Cervical cancer is the second most common cancer in women worldwide. In the U.S., the American Cancer Society estimated that in 2009, 11,270 women would be diagnosed with cervical cancer and 4,070 women would die of the disease.  Many more women will lose their fertility or experience pregnancy complications as a result of treatment for cervical cancer or cervical disease.

High-risk strains of a very common sexually transmitted infection called human papillomavirus (HPV) causes cervical cancer.  And if think you have never been exposed or never will be exposed to this, keep in mind that the Pearl of Wisdom Campaign says that 3 out of every 4 adults have had HPV at some time in their lives and the Centers for Disease Control say, “Approximately 20 million Americans are currently infected with HPV. Another 6 million people become newly infected each year. HPV is so common that at least 50% of sexually active men and women get it at some point in their lives.”  Everywhere I’ve researched the number, it has ranged between 50-80% of the population being infected with HPV at some point in time.

There are hundreds of strains of HPV, about 40 of which cause forms of cancer (include cervical, oral and anal cancer), and MOST forms of HPV are asymptomatic to the naked eye.  In other words, most people are completely unaware they’ve ever been infected.  Most HPV infections heal on their own, but some do not and cause cells on a woman’s cervix to change and become abnormal.  This can cause cervical dysplasia, and if allowed to continue to change, may cause cervical cancer.

However, with proper screening, cervical cancer can be prevented.  And the Pearl of Wisdom people also say vaccination is part of the solution  — which I will treat separately in this post.

Screening:  Pap Test AND HPV Test

The highest form of routine screening for cervical cancer is a Pap Test AND an HPV Test.  A Pap test only looks for abnormal cells, so a woman can get a “normal” Pap test while an HPV Test can reveal that there is HPV present.  If your HPV test is positive, it does not mean you have abnormal cells or cervical cancer. It just means that you have HPV and that your healthcare provider will want to follow you more closely to see if that HPV infection clears on its own, or develops into abnormal cells.

Although both tests combined is the most cautious way to screen, recent guidelines came out from the American College of Obstetricians and Gynecologists that recommends Pap tests for women ages 21 to 29 every other year and then Pap test and the HPV test for women 30 and older every three years.  The reason for waiting until after age 30 for adding the HPV test has to do with avoiding overly aggressive treatment of HPV infections that may clear on their own at a period of time in a woman’s life when the treatments — which can lead to infertility — may do more harm than good, based on what I understood from a conference call with Dr. Marie Savard, ABC News medical contributor and author of “Ask Dr. Marie: Straight Talk and Reassuring Answers to Your Most Private Questions.”  She has an article on the topic here.

The Pap test and HPV test are done at the same time from the same sample if you do a liquid (“thin prep”) Pap test, so do request it at the time of your scheduled Pap test.

Preventing HPV at the Source

Okay — I’ll admit that when I first started my blog, the following sentences were not part of what I envisioned I’d be saying, but it is information you need to know:  HPV is spread through skin-to-skin contact.  Which means that it does not necessarily require intercourse.  And that a condom does not necessarily prevent it because surrounding skin may carry the virus.

I am not anti-vaccine, nor am I the type of a parent to automatically follow the vaccination protocol without question.  I research things and I am a bit leery of relatively new vaccines.  With all the commercials for Gardasil, I did not understand why this vaccine was practically being crammed down the public’s throats and why at such a young age for girls.  After talking to the Pearl of Wisdom people (who are a non-profit group, not a front for a vaccine company) and Dr. Marie, I am understanding it a little more, although I have not made a personal decision on where I stand on the cervical cancer vaccines yet.  There are two now — Gardasil, which vaccinates against four types of HPV and Cervarix, which vaccinates against two — each of them vaccinate against the two most common types of high-risk HPV, 16 and 18, which are said to cause about 70% of all cervical cancers.  HPV vaccinations are approved for girls as young as age 9  up to women age 26 (according to the Gardasil site).  Because the vaccines do not prevent ALL high-risk HPV infections, they do not completely eliminate the risk of cervical cancer, and so these girls/women should still be screened to prevent cancer.

Vaccines are always a hot topic of debate. I recommend researching the pros and cons for yourself when making the decision about whether to vaccinate your daughter as this particular vaccine has generated a lot of passion online. Neither just take your doctor’s word nor fall for scare tactics — read, research and come up with a decision you are comfortable with.

What You Can Do

The Pearl of Wisdom Campaign to Prevent Cervical Cancer is trying to reach at least 4070 women (the number of women estimated to die of cervical cancer in 2009) this month and get them to the take the Pearl Pledge.  It’s really easy:

  • Call and make  your appointment for your routine screening  — if you are a man, remind the important women in your life to make that appointment
  • Go to: http://www.pearlofwisdom.us/pledge and check off “I’ve made my appointment!”
  • Email a reminder to 5 friends to do the same
  • Wear a pearl – earrings, necklace, whatever you have!  Or buy one (proceeds support the campaign) from the Pearl of Wisdom campaign.

Are you ready to take action?  Let me know by commenting below.

Giveaway!  The Pearl of Wisdom Campaign is providing 5 pearl pins to my readers — I’ll select the readers from those who comment through midnight January 22, 2010 ET and use random.org to help me choose the winners.  To be eligible, you will need to provide your email address so I may contact you to let you know you are the winner and get your snail mail address so they can send you your pin.

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Disclosures :  I am not a doctor nor do I have a medical background.  Any medical information should be discussed with your doctor, I relied on information provided by the Pearl of Wisdom Campaign, Dr. Marie Savard, the Centers for Disease Control, Gardasil, Cervarix and/or their web sites and reported it to the best of my layman’s understanding.  Your specific health should be discussed with your personal doctor.  As part of participating in an informational conference call with Dr. Marie Savard and the Pass the Pearl Campaign representatives, I received a copy of her book for more background information — which I found informative and useful, but did not impact my decision to write this post or what to write.  I have linked to her book using my blog’s Amazon  Associates link.  Purchases made through Amazon affiliate links on this blog yield a small referral fee. This applies to all purchases made on Amazon regardless of whether the product the consumer purchased was mentioned by me or not. The consumer’s purchases are confidential; I don’t know who has purchased items using my blog’s Amazon Associate links.