Young Survivor’s Conference Provides Fresh Perspective for Beyond Boobs! Volunteer

Young Survivor’s Conference Provides Fresh Perspective for Beyond Boobs! Volunteer

by Ann Pietrangelo

I recently had the pleasure of accompanying staff, volunteers, and members of Beyond Boobs! to the Young Survivor’s Conference in Orlando, and what an eye-opener it was! I’ve been a BB! volunteer for just over a year, and while I could talk and write about BB! convincingly, I can now feel its very heartbeat. That’s because this was my first opportunity to spend time with the young women who attend the support groups and benefit from the fun outings. Seeing is believing.
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During the three-day conference, the 40+ members of the BB! brigade visited the 50 or so exhibitor booths representing breast cancer organizations, health advocates, and more that were showcasing the latest products and up-to-date information about breast cancer. Fun stuff, from henna tattoos to makeovers, and belly dancing to modern dancing made the event as much a social event as it was a conference about a very serious topic. The BB! booth was a hubbub of activity, lovingly staffed by Vicki, Celia, and a rotating band of boobers who charmed passersby into stopping for a chat.photo-alp

Informative seminar topics included: breast reconstruction, integrative medicine, metastatic breast cancer, and genetics. Discussion groups tackled triple-negative breast cancer, mortality, weight, family planning, and lymphedema.

The emotional aspects of breast cancer were also addressed, including sex and intimacy, talking to children about cancer, caregiving, survivor’s guilt, relationships, living with metastatic breast cancer, dating, and advocacy. BB! will be sharing much of this information in the months to come.

And then there was BB!’s very own, “Surviving Survivorship: Living Life with an Exclamation Point!” Presenting to a packed room, Rene and Mary Beth skillfully led their audience on a potentially hazardous road trip that, as it turns out, goes a bit more smoothly when you’re packing the right tools. The ladies had ‘em on their feet more than once during their interactive talk. Among the highlights was Rene’s striptease, during which she morphed from her serious black lawyerly suit into the glittery pink Good Health Fairy, complete with wand, tiara, and high-top sneakers. Energized fans exited in a wave of bubbles blown by strategically placed boobers. It would not be overstating to say they totally rocked the house! Did someone say, “Encore! Encore!?”

Throughout the conference, I observed the genuine love these women have for each other, along with a deeper appreciation for BB! and all it represents. The emotional connection – bonding, learning, growing, letting loose – was the living proof of the BB! tagline, “living life with an exclamation point (!).”

I shared the 13-hour road trip back home with Rene and Mary Beth and now I know something else, too. They never stop. It’s all systems go, all the time. Even as we made our way north, they continued to focus on their work, although “work” is probably the wrong word. It’s truly a labor of love.

I’m a survivor, a boober, but my breast cancer occurred at age 51, and my experiences were somewhat different than that of a woman in her 20s, 30s, or even her 40s. Now, when I do my bit as a volunteer, it will be with a fresh perspective. It did my heart good to watch the women of BB! take care of each other. Each of them has the strength of a family/team behind them. No matter what happens, the group has their back. They need never feel alone.

Young women need what BB! provides – not only the support system, but the fun that can so easily be dismissed while dealing with cancer. I’m grateful to BB! for allowing me to play a small part in its mission.

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Breast Cancer between the hours of midnight and 7 AM….

Breast Cancer between the hours of midnight and 7 AM….

by Shawn Huddy

 

Any of us who have heard the phrase, “I’m sorry to tell you that it’s cancer,” know that feeling when time and sound come to a complete stop. When the silence in our own heads becomes a struggle to tolerate. And all the movement around us, within our line of vision, is jerky and slow. That single moment, we all remember it, when reason and sanity temporarily leave our body.

The First Wave

The next motion, for me, in that horribly vivid chain of events, is tattooed on my brain. It was with a shaky hand that I grabbed my phone and with a shaky finger began to dial numbers that I had memorized. No searching through my contact list. I had to physically press each number, feel the keys, hear the beeps through my phone speaker. I was calling those closest in my circle, and delivering the news with a shaky voice, because I needed someplace to go, to be with people and fall apart.

That night with those people who love me was critical. It was with those who love me that I was able to express how frightened I was. To vocalize my desire to live – or rather, my aspiration NOT to die.  My insistence that my daughter KNOW me, and NOT from stories that other people tell her about me, either. And that I get to watch her grow up and participate in the goal of raising her to be well-rounded, respectful, smart, compassionate, funny, and loved. I told Cancer to be damned – it wasn’t claiming me.

I cried a lot that night. I asked a lot of questions of people who had no way of answering them or easing my fears. But I was still in the company of loved ones. I knew I wasn’t in this battle alone. That felt so reassuring. So warm. I stayed that night with family. With the emotional safety blanket wrapped tightly around me.

The next day, when I knew I had to go home, I assured my family and friends that I was fine, fine. FINE. Not to worry. I would call if I felt like I needed to. I was exhausted and just wanted to sleep in my own bed. Get a good night’s sleep and have a clearer picture of things. A better attitude, perhaps.  With a deep breath and phony smile, I got into my car and headed home.

Have you ever traveled to a familiar place, lost in thought, when you suddenly realize, and well into your journey, that you have no recollection of the trip thus far? Well, that was my drive home. I was close to my street when I even remembered what I was doing or where my intended destination was. On that drive I wasn’t driving – I was itemizing my belongings in my head for the attorney, visualizing the attendees at my funeral, imagining my little girl shopping and laughing with her “new” Mom and forgetting about me. I was trying to choose friends to be in charge of educating her about me. I knew her Dad wouldn’t do much, as he and I were going through a nasty break up. I figured my eventual demise would bring him freedom and happiness. In short – my mind traveled to very dark and depressing places and conjured up very upsetting images and thoughts.

I walked in through the front door as if my home was foreign to me. I was afraid of the dark all over again, like I was as a child. I went through the house, just turning on the lights and staring. I don’t know what I was seeing. Not sure of my purpose. But everything I looked at seemed to represent this daunting chore or responsibility and I became overwhelmed. How will I maintain my home, care for my daughter and pets, manage a full time job, and keep up with friends and family. HOW??

Alone in the Midnight Hour

I walked into my room and the bed looked unwelcoming to me. How will I ever sleep again if my mind keeps putting me in the worst possible of scenarios? Sleep wasn’t coming. Not that night. Not the next. And when it did come, it was restless and filled with crazy body temperature fluctuations and bad dreams.

After a few nights with virtually no sleep, I had to shake hands with my new best friend — the Graveyard Shift. Yep – the two of us, we go waaaayyyy back. We shared a lot of late nights together…watching TV, reading books, organizing and re-organizing my sock drawer…all to try to fall asleep. Lots of boxes of Kleenex went by way of the graveyard shift, too. The moment I’d get into my bed and close my eyes, I’d start to forge into scary and upsetting thoughts. I’d question the validity and benefit of the medical tests and treatments I’d had, I’d question my physicians, and even my Maker. Why me? Wasn’t I a pretty good gal? I was kind. I paid it forward. I appreciate the beauty in everyone. I find silver linings. I volunteer. I help others. WTF???

Something happens to you when you’ve been diagnosed with cancer (or any potentially terminal illness or disease). You carry on as best you can through the day. You can usually find a slice of the day to smile and laugh. To hug and hold the hand of a caregiver. To appreciate what you do have. To feel grateful for the chance to fight the illness or disease with the help of professionals and family and friends. The sun on our faces helps create an optimism about our prognosis.

All of that changes when we crawl into bed with the intention of letting go of the day’s worries and ordeals in order to slip off into restful slumber. Doesn’t happen. Our mind and worry and fear just won’t let us let go. Won’t let our heart stop beating at an accelerated pace. Won’t stop the sweating palms.   It’s the medical version of Freddy Krueger…in this version he doesn’t haunt our dreams, but our ability to sleep, therefore we can’t relax enough to get good sleep.

Fear of the unknown is always a challenge, but fear of death is claustrophobic and choking underwater and tethered to a hangman’s noose. None of this is more obvious than at night when the rest of the world is peacefully dreaming and recharging their body’s battery.

Since I had gotten the cancer diagnosis right after being forced into singledom, I was so afraid of being alone at night. I wished and longed for another warm body in bed next to me, seeing his slow breaths and chest movement – close enough to touch and lie next to…I was convinced it would help calm my fears. In hindsight, I’m not sure it would have made any difference.

When the Lights Go Out at Night

It’s really THIS black and white…your family and friends worry with you, they worry about you, they cry and pray and keep faith…but when the lights go out each night – you could be fighting for your life – and they are not. You could be facing death – and they are not. So, they sleep without the panic that you try to shush internally.

I don’t have any advice for you. Nothing worked well for me until I got further along in my journey. I came to terms with my diagnosis physically, mentally, and spiritually. I trusted my physicians, I followed my treatment plans without question, I leaned on my support systems, and I re-established a line of rapport with my higher power. Some nights I was just too darn tired to worry, and slept well. Some nights were still restless and difficult. However, the card game Solitaire is helpful. Reading is good. TV can lull you to sleep with the background noise. Sleepy time tea can help make you tired. But I couldn’t give you a one-size fits all remedy for a good night’s sleep. I still can’t.

In time, however, the hours of peaceful sleep each night started to extend and my days and nights were less and less filled with fear and dread. I had to learn to lean on people. I had to share my fears and tears with like-minded individuals. This is a big reason that my support group was key to my mental survival. I can’t tell you how often I’d grab my phone, after midnight, and scroll through Facebook to see that some of my breast cancer sisters were also fighting off insomnia. Those crack-of-dawn posts and chats were priceless. Someone empathized with my worry and helped me off the figurative ledge.

It’s been three years since my diagnosis, and many nights, sleep is still not as restful or as uninterrupted or as regular as I’d like it to be. I have had to adjust my feelings about it in order to not be frustrated by losing the ability to hop in bed and within 30 minutes – out!  But the Good News is that these times don’t bother me like they used to because there is always a support group member up when I am. We will catch each other on Facebook posting or commenting on other posts – then we will start to chat.  We make jokes, we share stories, we commiserate about how crappy the insomnia is – but it’s not the end of the world …or the end of us.

No Longer Afraid of the Dark

I’m still single, but I’m not afraid of the dark, or the night, or losing sleep. I am not alone. Neither are YOU!!

 

 

 

 

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Breast Cancer… Through the Eyes of a Son

Dear Friends,

When someone is diagnosed with cancer, the effect on the patient is pretty obvious, and sometimes we forget how much and in what ways the diagnosis may impact the family members and friends.  In this school assignment  to write about a first time experience,  Jacob opens our eyes to what he felt when his mother, Angel, went through breast cancer.  We are grateful that he allowed us to share his essay.  We think Jacob is pretty amazing, and we are sure you will agree after your read his words.  

Hugs, Mary Beth

While I don’t like to talk about this often, as it makes me feel like I’m “boasting” about a struggle that was not truly mine, I’m also often told that it’s a little uncaring to not note my part in it at all.  So, for my essay, I will be writing about my first experience with breast cancer in my family.
Before my mother was diagnosed with breast cancer, I don’t think that anyone in my family (including me) knew that much about cancer, other than the basics: That it has no “cure” yet, that it kills a lot of people, and that a lot of people are working to find out more about it.  So, when the news hit, it significantly changed how we saw the disease and, in a way, the world as a whole.30072_1490615910064_7480650_n

It was April, 2010, when I was told that my mom was diagnosed with breast cancer.  I was in the 7th grade, and was only 12 years old at the time, so I didn’t really know how to react.  She said that she was actually fairly lucky, since the cancer was found on a routine mammogram, and it could be removed.  We found some comfort in this, but we still were very scared.  I had no idea what I could do or what would happen, but I still tried to help her when I had the chance.  She tried to comfort us by doing things like bringing home books on how to deal with cancer in the family, ranging from very factual booklets, to childish picture books, but they never really helped me.  While I did care, I didn’t want to read about it when it comes to how it would affect me.  While I had full faith in my mother overcoming the disease, the books only felt like salt in the wound.

Her treatments carried on into high school, and here’s where we all got to see its effects first-hand.  They tend to make cancer treatment out to be much simpler than it actually is.  Cancer treatment is made out as just chemo, radiation, and hair loss, when that is only part of it. 33470_1661257295992_3735872_n There were many days where my sister (who was about 7 years old at the time) and I would have to be home alone because mom was in the hospital, and dad had to make sure she was okay.  When she was home, she was no longer as energetic as she was before.  She walked around in a half-asleep state, and didn’t have the energy or strength to preform many basic tasks.  For the most part, she may as well have been bedridden.  As the time went on, we got to see all her hair disappear.  When I say all her hair, I mean her eyebrows and eye lashes as well.  She went from having long brown hair, to lacking all the subtleties you would expect of the human head.  The strangest thing was that this was the easiest part of it all.  We all even found humor in the situation, in how silly it was.  My mom even joked about how she “now knows how a newborn baby feels”.  You could always get fake eyelashes, draw on fake eyebrows, and get a bunch of silly wigs and hats.  However, you could not get a replacement for all the pain that the treatment makes your body feel, nor could you get back the energy that it takes away.

To make matters worse, my dad works in the Navy, and had to deploy a few months after my mom was diagnosed.  Combined, these two things had a very powerful effect on everyone.  Throughout all of this, I tried to not let it affect me.  I told people at school, both friends and teachers, but I tried not to bring it up often.  This wasn’t only that I didn’t want to talk about it, but also because it felt like I would be making an excuse at the expense of someone else.  My mom was the one suffering, while I was perfectly okay.  To me, claiming that it affected me academically would be faking a broken arm after seeing the attention that the person with the real broken arm got.  I did care about my mom’s health, that’s why I didn’t want to undermine it by complaining about my “suffering”.  While it did affect me heavily, it would have been arrogant for me to “take credit” for the suffering that was not experienced by me.

Eventually, my mom was able to overcome the cancer and successfully had it removed from her body.  But, this taught me another thing I didn’t know about breast cancer.  A lot of surgery goes into attempting to bring back healthy tissue that was removed.   The most surprising thing was that the reconstruction surgeries are the ones that seemed to be the most dangerous.  While the chemo made my mom weak and sick, the reconstruction opened up the possibility of much worse things.  One of the scariest experiences I had during this was when my mom began to feel unusually sick.  We all watched her to make sure she was okay, even calling over a friend who was a nurse.  That’s when my mom and her friend realized what was going on.  The device put in place to help reconstruction had caused a major infection to begin to develop.  This meant that it must be removed, alongside all progress towards the reconstruction.  That was when I saw my mom go from seeming okay, to being in great sorrow and despair.  She didn’t want to have it removed, even refusing to go the hospital at first.  I didn’t understand this, and I’m not sure I even understand it now.  The tissue that was lost was not, as far as health goes, important.  It also didn’t make her appear strange in anyway, with even having many thing that would hide it if she felt otherwise.  But still, she seemed to initially choose her health over losing it.  This was the closest I felt to thinking that she was going to die.  She eventually went to the hospital and had it, as well as the staph infection, removed.IMG_8739

After a few years of treatment, the worst is now behind us.  However, the effects of the cancer are still present.  My mom is still going through reconstruction surgery, but nothing even coming close to before has happened.  The cancer has not returned, and I hope never will.  Her hair has regrown, and she has regained much of her strength.  She’s now active in the breast cancer support group “Beyond Boobs!” and has found a lot of people who have or are going through same thing as she did.  Everyone in my family is now more aware of the effects of breast cancer after seeing what it can do first-hand.

-Jacob (16 yrs)

02/07/14

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How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t

Hennahead2How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t
By Ami Dodson

One of the many challenges and frustrations of having a chronic condition that mandates wearing a visible device every day is when that disability is relatively unknown outside the breast cancer community. Imagine that you had diabetes and needed an insulin pump to regulate your blood sugar. Someone might catch a glimpse of your pump under your clothes and ask what it is. “An insulin pump,” you’d say, and the conversation could be over.

Now imagine that you have lymphedema and you must wear a compression sleeve every day, and a tighter compression sleeve when you exercise or fly in airplanes. Imagine you are in a yoga class, focusing on your Ujjayi breath, when suddenly you hear the instructor say, “You there – you in the back! Yes, you. What’s that thing on your arm?”

Flustered and aware that a room full of strangers is now staring at your misshapen figure, you stammer, “Uh, um, a compression sleeve.”

“What’s it for?”

“I, uh, I have lymphedema.”

“What’s that?”

“It’s a chronic condition that involves swelling of the extremities due to insufficient lymphatic fluid movement throughout the body secondary to removal of the lymph nodes and common in women who have had mastectomies to combat their breast cancers. Shouldn’t we all come out of Warrior Two now?”

Okay, that last bit is an exaggeration, but the first part of that exchange really did happen to me during a yoga class. The instructor was tactless and callous, but the real problem for me is that there is no easy answer to “what’s that thing on your arm?”

Variations of that conversation happen to me all the time, mostly by well-meaning people who assume I have sustained some minor injury, like spraining my elbow, and are legitimately concerned about my well-being. Although one person asked me if it was a cover to hide embarrassing tattoos. At a cocktail party. For my work.

It’s been a challenge for me to come up with something to say that is polite and clear, but also firmly conveys that this is not a conversation I wish to have. It’s never easy to discuss your breast cancer with casual acquaintances, and there is really no way to avoid going from “I have to lymphedema” to “I got it because I had a double mastectomy.” And yes, there was chemo. And yes, it was awful. And no, I do not want to hear about your second cousin twice-removed who had breast cancer and cured herself using only vitamins and meditation. Amazing!

All of this is compounded by the fact that the sleeves are ridiculously ugly. (Yes, I know about LympheDivas – they are fantastic, but unfortunately, they don’t fit me, so I’m stuck with the Medi brand sleeves, which are unattractive in a way that only a true medical device can be.) You can’t wear long sleeves all the time because it is difficult to fit your enormous arm into your regular size clothes. So you have to buy one size larger shirts to accommodate your arm, which makes the rest of your torso look like you either borrowed your mother’s clothing or don’t know how to dress yourself. So you start experimenting with sleeveless tops or tank-dresses and we’re back to the original problem of the ugly compression sleeve. And that it’s winter and you’re freezing.

So what’s a girl with lymphedema to do? My personal solution has been to invest in a lot of very sparkly jewelry that makes me feel glamorous no matter what monstrosity is on my arm. 12-27 Bracelet I am however, still looking for a good, short answer that would have shut down my embarrassing exchange with the yoga instructor.

Have some ideas? Fabulous. Leave them in the comments and let’s have a conversation on our terms, on our time, in our community. No downward-facing dog required.

Namaste.

Related Reading: On Lymphedema, Serial Killers, and Therapeutic Torture Devices

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Memoirs of a Beyond Boobs! Calendar Girl

Shared by Shawn Huddy ~ Miss December 2014

When a person gets a diagnosis of a medical condition that is quite possibly life threatening, that person doesn’t often find the silver lining immediately.  I know this because I have been there – with breast cancer.

It’s odd because I couldn’t tell you what I had for lunch or dinner 3 days ago – but I can tell you, in great detail, about the phone call I received in which my surgeon told me I had breast cancer. I can tell you what time it was.  What day it was and what day of the week.   Where I was leaving when I got in my car.  Where I pulled my car over for her to deliver the news.  The exact order of the phone calls I made immediately after.  Who’s house I drove to – to fall completely apart and cry and ask questions of people who love me, but who had no answers for me.

In that same odd vein, I cannot tell you, with many specifics, about my first meeting with my Oncologist.  Those were possibly some of the most important minutes of my adult life and they are fuzzy.  But I do remember numbers like 50% chance or recurrence with only chemo; 28% chance of recurrence with chemo and bi-lateral mastectomy; 14% chance with chemo, bi-lateral mastectomy, and radiation.  I remember those percentages because my Oncologist wrote them on the dry erase board for me.  I calculated them up forward and reverse.  I made my decision – “All of the above, Doc.  Please save my life and let me watch my little girl grow up”.

The reason I am writing these things on this blog is to make a point about Beyond Boobs!  My hunch is that if you asked the breast cancer survivors you know about when they got the news – I bet most of them will be able to tell you a great deal about that event.  And I bet a lot of those same survivors might be sketchy on the details of their first Oncologist visit, and they probably had someone else there to hear and ask questions for them in case they got overwhelmed.

A lot of people in our lives have sympathy for us if we are diagnosed with any life threatening illness.  They care about us and they understand our suffering and they want to stop it and fix it.  Beyond Boobs! Is a support group designed for pre-menopausal women diagnosed with breast cancer. So, when you go to a Beyond Boobs! meeting you are met with empathy.  The “boobers” at these meetings have mutually experienced breast cancer and the emotions, the physical challenges and changes, and the thoughts and questions that come with it.                         CLIFF NOTES:  THEY GET IT!!!!

I tried one support group prior to my first chemo infusion and, although the group members were kind and supportive and helpful, I didn’t feel better when I left the meeting. . . . I felt worse.  I decided to write off support groups altogether.  Then a friend referred me to another friend who was in Beyond Boobs!  I went to my first support group meeting with BB! in December of 2010.  This time it spoke to me, in fact it had “Shawn Huddy” written all over it . . . in at least seven different languages!!  I was hooked.

What happens when Beyond Boobs! Hooks you???

shawn (1)

Well, that silver lining I mentioned in the very beginning of this blog . . . it comes at you from all directions.  That empathy and bond and desire to help happens and all of the “boobers” take you under their wing and make sure you know about the light on the other side.  Their love is so apparent in each event, committee meeting, support group meeting, impromptu lunch or drink after work.  BB! has become an extension of my family and social circle.  We know each other’s kids, significant others, parents, friends, etc.

It’s a crappy club to be part of because of the whole “cancer” thing, but I have met some of the most amazing, diverse, strong, supportive, intelligent, knowledge seeking, loving, funny, spunky, spirited, and fun people of my life thru Beyond Boobs! They are a living, breathing, encompassing, evolving silver lining.  How could you NOT get hooked on Beyond Boobs!We give lots of hugs. We hand each other tissues for lots of tears.  We share lots of laughs.  We love and extend our hands and hearts to each other.

Then before you know it – we are all advocates and lobbyists and voices to be heard.  We create a work force at fund raisers.  We call on our connections for hook ups and donations. We share potential life saving information with one another and thru social networks.  We post encouraging messages on Facebook and within the BB! pages.  We apply to be dancers, fashion models, calendar girls.

Yep, I got to be in the 2014 Beyond Boobs! Calendar for Life (and breast health manual). I’m Miss December. It’s not the picture I initially thought was fitting of me – because even though I like to talk like I’m sassy and tough,  I’m really just a kitten.  In the picture I am punching glass and the glass is cracking and about to shatter all around me.  My image has gotten a lot of attention for being powerful and empowering.  So, I am starting to really like my picture and to identify with my inner bad-ass.

Being chosen to represent Beyond Boobs! In the 2014 calendar was a huge honor and I am so proud and pleased to be part of it.  When I went thru the physical changes of losing my breasts and hair there was nothing powerful about me.  I was completely self conscious.  I felt unattractive, fearful, unworthy, and unwilling to stand up for myself.  Beyond Boobs! helped to give me back my mojo, my worth, my ability to question things about my world that were unacceptable to me and to feel confident enough to change them.  It’s been a beautiful lesson for my daughter, as well.  Her mama ain’t raising no wallflower, here.

I’m still a work in progress and still need to make improvements in my life but I am finding the inner strength to accomplish the tasks at hand.  I may not be a total bad-ass, but I did get to play one in the Beyond Boobs! Calendar for Life 2014!

A Calendar to Live By 2014: See the Video!

A Calendar to Live By 2014: Order Now!

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