Tag Archives: breast cancer

The Quiet Room

7 Mar

The room is lovely; serene & conducive to quiet speculation or whispered communication. The swirls in the mint green carpet complement the upholstery on the chairs, the hardwood sections of the floor & the paintings that adorn the walls. Even with the obvious hand of a decorator, it remains a nondescript room for waiting but adds some of the comforts of home like fresh coffee in a coffee maker, a small refrigerator stocked with canned drinks & little baskets filled with cheese crackers & various other cracker snacks.  A large flat screen TV hangs on the wall, its audio kept at a somewhat subdued level for those who are inclined to watch. Significantly, there is a box of tissues on the coffee table.

This morning there are 12 of us filling most of the seats. It is quiet & we don’t immediately speak; faces lost in thought; eyes seeing some far away image of a life well lived or a child waiting to be loved. Most of all there is sadness; not only in the eyes of those sitting & waiting, but it seems to hang on the well-appointed wallpaper, left there from years of women who have gone before us this morning & waiting to be brought to life by some memory or word that has been said there far too many times before.

We’re all wearing the same thing – our uniform; a long hospital gown made of the same fabric tied in the front….except for the elderly woman to my right who has tied her gown in the back in the usual way unable to understand that here we wear them differently. We tied them in the front for easy access & there’s something sad about that, too.

We’re all sharing space in this room together because of a similar condition. This is the Breast Imaging Center & it’s not the place most women go to get their annual mammograms.  On the contrary … this is where we go to get follow-up mammograms when the original one we got is somehow defective or irregular or abnormal. This is why we share the silence today & the hollow-eyed vacancy of a stare with tears & fear just rippling under the surface.

Some of us are here for the first time. Some of us are repeat attenders … we’ve gone down that breast cancer road & from that day forward we have come & will continue coming to this place for our annual mammograms because we are survivors hoping to continue to be just that – survivors. We are somehow forever different & we gather here annually to check & recheck our status, hoping for the best.

Because this is soon to be my 9th. year of survivorship, I break the palpable silence. This isn’t my first rodeo but I can look around the room & almost guess whose it is. Even more women have entered the room & taken a seat wearing our uniform. The eyes are a bit more frightened, a bit more haunted, a bit more filled with longing & sadness. I know what’s going on in the minds behind the eyes. I’ve been there… but today I say, “There couldn’t be any women in Lynchburg today because we’re all here.” There’s laughter & even gratitude in some of the faces … gratitude for hearing one of us speak & leading the way to conversation.

We all have such unique stories about how & why we’ve ended up here this morning together & some of us begin to share them … to break the ice … to reach out to our sisters because that is who these women & I have become. Sisters in the fight against breast cancer. One woman observes, “Women really have a lot to deal with” & we all agree….because we’re HERE.

In time some of us begin to tell our stories or ask to hear someone else’s. There’s comfort in numbers, whether sharing a similar experience or learning from listening to the telling of one by others.

Our circle, like our numbers is fluid. We begin with 12, then 15, then 9 as we are called individually to have our mammograms. Some are annual mammograms like me who are there because we are survivors & regular mammogram centers don’t process us anymore. Others are first-timers; there to follow-up on a suspicious mammogram with another mammogram & possibly an ultrasound that will change their lives forever.

I remember being at that stage & I say a prayer that today’s mammogram will be unchanged. I say additional prayers for my new found sisters who will receive life-changing news this afternoon, regardless whether it is positive or negative. Just crossing the threshold of this room today for the first-timers is a life changing experience. For those with bad news, that life changing news will catapult them into another realm where they will be tested as to strength & durability as they tentatively begin their journey down the breast cancer road. For those who are negative & have only experienced a scare, life at mammogram time will forever be tainted with more fear … fear of the “what ifs” & the unknown.

Today I am relieved that my annual mammogram is unchanged. I’ve been here so many times that the staff is more like friends than ‘staff & patient.’ I am hugged by one of the mammography doctors. She is my friend after these many years & she knows, like I know that she & I are sisters & part of that sisterhood of women threatened by breast cancer. As we hug we silently rejoice in the knowledge that today we are both free of that darkest of passengers.

My husband is waiting for me, his brow creased with worry until he sees me & I smile. He tells me how worried he’s been & he kisses me. He gives me a yellow dandelion he’s picked for me because he doesn’t have real flowers. I take it gratefully because it is a treasure & a symbol of the goodness of the day.

On the way out of the building a woman rushes up to me smiling. She & I sat side by side in the waiting room, sharing stories of our illness, which resulted in sharing stories of our courage with a sister who understands.

I tell her I am OK & she tells me she is, too. We hug as though we’ve known each other for ever, but that’s what sisters do. I introduce her to my husband & they shake hands. She is beaming.

We exchange names & promise to keep in touch through Facebook.

She leaves before we do & there’s a spring in her step … a good news spring & I wonder if I have that same step … but I’m sure I do.

This morning the size of my family has increased & that both makes me glad & saddens me. I’m glad to have shared a moment in time with a waiting room full of special woman but my heart aches for every one of us who has ever or will ever hear those words, “You have breast cancer.”

Before my new friend leaves, I tell her I hope all the women we shared the morning with are cancer free & she agrees, even though we both know that is unlikely. We HOPE because our family circle has increased & we want the best for all of them … our new sisters.

And so we HOPE ….

 

Encouragement

17 Jan

I mostly enjoy writing blog entries that are amusing in some way if not downright funny. I like making people laugh. I especially enjoy recalling events & incidents that have made ME laugh & sharing them  … but occasionally something serious comes along that really makes me think & I want to share it.

Just inside the large double doors of our church, the “greeter” Sunday morning handed us the bulletin with a smile. On the front of the bulletin in large bold letters were the words, “Encouragement is Awesome” & the message, “It can actually change the course of another person’s day.”

The minister’s message was also, “Encouragement.”

During the message that touched on many kinds of “encouragement” & how it can affect our lives, he also mentioned how negative messages can also change our lives. But his main message was about how encouragement affects us & he asked the congregation to think about personal encouragement we have received & how it may have been life changing. While he engaged us, he wasn’t actually asking for individual responses to his question but, instead, encouraged us all to reflect on those specific personal moments of encouragement that have been a large part of who we are.

The very first thing that popped into my mind was being told, “You have breast cancer.”

It’s unlikely that such negative news could hold anything even vaguely connected to encouragement, yet for me, it did. It wasn’t immediate, though, & not for a while.

After receiving the diagnosis & that awful news, I was totally overwhelmed. The first few months that included breast conserving surgery & my first 2 chemotherapy treatments I was existing in a fog that included confusion, disbelief & fear. It was a very dark time.

Two months following my first chemo treatment & the loss of my hair I began working on putting together my club’s 24th. Anniversary Party. Even with my husband’s help I wasn’t sure how I was going to do that around chemo treatments & my continuing confusion.

As I got into working on the party & attempting to be creative I decided that we needed to build a backdrop related to the theme of the party for people to stand in front of to have their pictures taken at the event.  Building the party around a Star Trek theme, from there I had an idea & told my husband, “We’re going to build a Holodeck!”  And so on the weekends when I didn’t have a chemo treatment, we DID build it.

As the Holodeck took shape so did my determination NOT to let the cancer change me or stop me from doing the things that made my life the joy that it was & had been before that awful diagnosis.

So how did that awful, negative statement, “You have breast cancer” become the huge encouragement that it was?

After completing the Holodeck & enjoying the party my determination grew. While completing chemo & 33 radiation treatments I had a bit of time to do a lot of serious thinking. I thought about all the things I’d hoped to do with my life; a number of them that I had put off, telling myself I could do them later. That frightful diagnosis brought home to me the fact that we really aren’t promised tomorrow & if there is something we’d like to do, we need to do it now. We may not have second chances.

Consciously & perhaps a bit unconsciously I made a mental list of things I still wanted to do with my life. It wasn’t anything I called a “Bucket List” because it really wasn’t like wanting to fly a helicopter or wrestle an anaconda or see the Northern Lights while standing at the top of the North Pole. My mental list consisted of using the talents I’d been given & enjoying them while I still had time.

Some of what I was able to accomplish & check off my list simply fell into my lap. I was offered a chance to host a local television talk show on an independent Comcast channel. For years people had told me I should be doing a TV talk show because of my sense of humor & ease in interacting with people, so when the opportunity came along I only had to think about it a few days before I signed the contract.

With the help & encouragement of a published author from New Zealand that I met through a friend on Facebook, I wrote a book. It took me 2 years but I did it & included another seldom used talent. I did the illustrations for the book & laid out the cover myself. It was a labor of love shared with my author friend from New Zealand who guided me through the process until the book was published.

I began speaking to seminars & groups about breast cancer, hoping I could make the journey through that darkness somehow easier for those facing their own dark journey.

Today I have realized most of what was on my list & have done just about everything I’ve ever hoped to do with my life. I am blessed.

I was especially blessed to host the Lynchburg Live television talk show for 6 years until the studio closed its doors due to increasing production costs. I realized that dream &, in the process, met some amazing people & brought attention to causes & concerns locally that eventually, & in some cases, made life more fulfilling for many of my viewers. It was one of the most exciting & rewarding times of my life.

Today I am a freelance writer. I’ve been published in several magazines, in our local newspaper & in Chicken Soup for the Soul: Inspiration for Nurses. I’m writing this blog & it’s the most enjoyable writing that I do. Even though I don’t get paid for it, it’s an opportunity to share my thoughts & experiences with those who wish to read it. I am able to share MYSELF.

My book was remarkably well received. I received notes & emails from readers that brought me to tears. My goal for the book was never to make a specific amount of money but was, instead, that it resonated in some personal way with my readers & touched them on some personal level that we shared.

Not only do I still speak to seminars & groups about breast cancer, I also speak about fundraising, being a professional woman & various nursing topics. No longer afraid to speak publicly, I’ve found joy in speaking about those things about which I am passionate.

Because of that terrifying news, “You have breast cancer” & an unexpected determination, I have been able to do all those things I’d wanted to do but never really thought I could. It was a negative ‘kick in the pants’ that opened my eyes to the joys of using my talents. It also opened my eyes to the joys around me … the beauty of spring & fall, the quiet of a rainy day, the joys of having breakfast in the sun room on a snowy morning. I saw those things before but not with the depth & appreciation I see them now.

So when our minister asked us to reflect about our most positive encouragement & my first thought was being given the frightening news that I had cancer, it made me think back to how those events unfolded. I wanted to share how sometimes the most unexpected, terrifying negative news can be our greatest encouragement. It goes hand-in-hand with, “Never give up …”

Our minister is new with us this year & he is young but sometime when he has a moment I want to tell him this story & tell him how his sermon led to my response & eventually this blog entry.

We never know what we can do until we try. And we never know how strong we are until we HAVE to be …

 

conference psych may 2016 14

Breast Task Force … (Not Again!!!)

25 Apr

Her left breast has a deep dimple underneath a 2” scar. It has lost some of the fullness that use to mirror that of its twin that is nearby. Changed though it is, she is forever grateful to have it. She was over 50 when she was diagnosed.

The first few sentences of this blog entry are not a crude attempt at “Boob Porn.” They are a description of the landscape of the left breast of a friend of mine as she told it to me. Her breast now includes what she refers to as battle scars; significant reminders of her battle with breast cancer.

We may think that far too many women have a similar description but they are, for the most part, testimonies of lives that have been saved because of early breast cancer detection.

Six years after my own battle with breast cancer, I believe I may have won. If not won (none of us is ever sure about that “winning thing”) at least I have survived this far & am more grateful than I will ever be able to put into words for the last six years of my life. Every day I am ecstatic to be a member of that elitist group, the Survivors Club, for there is no stronger group of people alive.

I, too, was past 50 when I was diagnosed with breast cancer with my annual mammogram. My mammogram the previous year had been normal. But a lot can happen in a year & if anyone would like to argue that point, I am up for the argument & the challenge. Not only can a lot happen, an entire life (lives) can change.

Right now I have three very pressing things that I need to be doing. I’m putting them off because yet another of those Mammography Task Force Recommendations has made it to the forefront of the nightly news, is again generating talk show debates & I feel a very personal need to address that. I’m taking this time because I want you to hear it from ME, the truth, … from a survivor … someone whose life was saved after the age of 50 by an ANNUAL mammogram.

I have the poop, the skinny, the raw truth that the men & women (could there possibly have BEEN women?) on the most recent task force apparently have never come face-to-face with. Apparently none of them have had a personal acquaintance with breast cancer or watched a loved one take that uncertain journey through treatment. Had they, I believe their recommendations would have been different … or different depending on who paid the task force (entirely my personal opinion, of course, & pointing fingers is not the reason for this blog entry).

The latest Task Force – the US Preventive Services Task Force recommends, in case you have missed this in the news, that the decision for mammography screening on women prior to 50 years old should be an individual one. Women ages 50 to 74 should have mammograms every other year (biennially).  Data on the benefits & harms of mammography on women over 75 years old is still inconclusive & they recommend AGAINST teaching breast self-exams. WOW! They did point out, however, that family history & other risk factors should be considered when deciding when to begin mammography screening. I guess that’s something.

There are many truths but I will start with truths about women in my age group … those women over 50. We are productive people with unfinished careers, second careers to be embarked upon; families that still need us, retirement to look forward to. We are powerhouses of ideas, experience, productivity & worth that embodies so much that is positive. That does not suddenly stop because one reaches the age of 50. We deserve all the technology available to help us achieve the longevity we need to reach our goals & continue to be the productive people we are.

As with a similar Task Force in 2009 that mostly came to the same conclusions & shared their recommendations with the public, this most recent task force concluded that women age 50 to 74 need only get a mammogram every other year. Yet I am sitting at this desk a prime example that annual mammograms DO save lives. Because more women have taken responsibility for their health care & are getting annual mammograms … key word ANNUAL …. breast cancer is no longer a death sentence.

The thing I find so disturbing about releasing these task force findings is that there are women who are already frightened of breast cancer & the associated mammograms. These are the women who will cling to the suggestions of such task forces out of fear & by the time they finally go for a mammogram, it is often too late. My heart grieves for the wonderful women we have lost & WILL lose because of these task force suggestions.

The most recent statistics have proven that annual mammograms save lives so I am at a loss to understand the necessity of beating this dead horse to a bloody pulp time & time again.

In 2007 I had a normal mammogram. In 2008, almost to the day of my mammogram the year before, I presented with breast cancer. Had that lesion gone undetected for another year while awaiting my next mammogram that would have taken place in 2009 according to the task force recommendations, my chances of survival would have decreased exponentially.

In light of the statistics, I am at a loss to understand the recommendations by the recent task force on this subject. Before they beat that horse to death again, they surely must have confiscated & made personal use of his blinders.

While more breast cancer cases have been detected, the death rate associated with breast cancer has impressively decreased … due to early detection … & early detection is directly related to mammography.

Findings from both task forces site the emotional trauma women of every age experience from “false positive” mammography results. Please ……. women give birth to babies, are heads of households, head corporations & run countries. You cannot convince me that women can’t handle a false positive mammogram report that leads to a follow-up mammogram or ultrasound that gives the woman, in most cases, a definite negative result. It’s still a win-win no matter how you slice it (or squeeze it). If you have a false positive, you are retested & have very good results. If your false positive is actually “positive,” then your survival expectancy has increased due to early detection. It’s a no-brainer. Believe me; I’d rather deal with the anguish of a false positive report for a small amount of time than a surprise diagnosis of breast cancer gone wild.

And then there’s the claim that mammography is painful. Depending on your tolerance of pain, mammography is on the lower “smiley face scale” where the little round head has hardly a grimace. A little discomfort for a very few moments once a year is worth the peace of mind you get with a normal mammogram. And once again, oh, please ……… women give birth to babies, many live with abusive spouses, they are heads of countries … we can tolerate, once a year,  a few minutes of discomfort that generates hardly a grimace on face #1 on the pain scale.

Even though the recommendation is that non-high risk women begin getting mammograms at age 50, I still believe that ALL women should get their first screening mammogram at age 40 … earlier if there is a strong family history. That’s STILL the recommendation of the American Cancer Society, doctors & breast specialists everywhere. More & more women are being diagnosed at an earlier age. I strongly believe that women should make informed determinations about when to get their first mammogram based on family history, genetic testing & being proactive about personal health care but age 40 should be when a woman begins her mammography history.

Bottom line … PLEASE continue to get annual mammograms. Do self-exams. Do NOT allow a task force to dictate your life expectancy. Breast cancer is one of those cancers that we can beat … we only have to be willing to be firm in our determination to be THE most active participant in our own health care.

Now … just ONE MORE THING. A friend of mine went to her GYN doctor for her annual check-up & Pap Smear shortly after having turned 65. While mostly naked & having “assumed the position” in the stirrups her doctor informed her that Medicare, of which she had recently become a participant, will not pay for Pap Smears annually in women over 65 but WILL pay for the test every other year. My friend was livid & told her doctor to do it anyway & SHE would pay for it.

The doctor told her “statistics” show that women over 65 are less likely to get cervical cancer. Less likely is key here … if women over 65 can still get cervical cancer, they should still be tested for it without having to pay for it out of their own pocket.

Another reason for not doing a Pap Smear, the doctor pointed out, is that women over 65 are less sexually active. OH, PLEASE (again)…….. has anyone taken a good look at 65 year old women lately??????

If even one life is saved because someone reads this blog entry then I feel blessed …and I do thank you for reading this.

 

mammogram 2

 

Boobs and Roses

20 Feb

I just had my annual mammogram &, thankfully, it was good again. My boobs have another one year extended warranty.

After having taken that unexpected & unplanned breast cancer journey, I always get antsy before my annual mammogram. Most of the people I know who’ve had the experience also have the shared anxiety. I think more than seeing it as a threat to our mortality, although there’s that, too, what it boils down to is we’ve simply been there – done that & just don’t want to do it again. Other people may not understand our “mammoxiety” but WE all do & easily sympathize with our sisters-in-battle when each of us has our annual turn at a mammogram. We also understand our shared relief when the mammogram is GOOD & even better, when it’s good AND over.

There’s a weird thing about breast cancer – when you’re first diagnosed a number of friends & acquaintances don’t know what to say to you. Some can’t even look you in the eye. This surprised & confused me until speaking with other survivors who had also had the experience. What we decided is that as newly diagnosed women, some friends & acquaintances look at us & realize, There but for the grace of God go I,” & it scares the hell out of them just like it used to scare us. They suddenly see their mortality reflected in us & it’s frightening as hell.

Another phenomenon that a number of us have experienced is having a friend who is there for us, very attentive & helpful throughout our treatment & recovery but who disappears or removes themselves from our lives once we are well. This is probably the most confusing situation of all & I remember, when this happened to me, wondering if I’d become less interesting or less friend-worthy without the cancer. I still don’t have an answer to that one but I suspect the answer lies with the helpful friend & not with me.

Helping during an extreme crisis, no matter who or what the crisis, fulfills some need within that friend that really hasn’t a thing to do with us. We’re simply there with cancer & become magnets for those friends who have a real & personal NEED to be “helpers & caregivers.” It may also have something to do with a personal morbid fascination with the fact that a friend has cancer & they don’t … sort of a juggling of odds… & the delusion that helping somehow will keep them from HAVING. In the end, though, the fact that they disappear is confusing & hurtful & makes their help far less appreciated. But it happens.

The best thing anyone can do for someone going through the breast cancer experience … or any critical time of their life is to treat them as you always have. Listen to them if they need to talk. Sit quietly with them & hold their hand if they need to cry. Talk to them about the cancer because they need someone they can be totally honest about their feelings with. That will be more appreciated than chicken soup, bed socks & items bearing the breast cancer logo, although those things can certainly brighten a day. Those are the friends that we hold close because they are the friends who continue to be our friends, never skipping a beat regardless of the tests of friendship with which they are faced… regardless of cancer.

Willy & I met Beth & her husband right before I was diagnosed in 2008. Both were very supportive while Willy & I were going through surgery, chemo & radiation. I say Willy & I because he shared the experience with me & was often the reason I was able to get through a particular day or another treatment. At the completion of my chemo Beth gave me a huge bouquet of long stemmed yellow roses, a hug & a whispered message that “women just need flowers.”

And so began a strong & wonderful friendship between Beth & me. Whenever there was something to celebrate or a crisis Beth gave me a rose or several roses. In her times of crisis, I sent her decadent food I knew she wouldn’t indulge in at any other time & sometimes flowers.

In 2012 Beth was diagnosed with breast cancer during her annual mammogram. On her follow-up MRI they found cancer in her other breast. She called & told me the news & asked, “How did you get through this?”  I told her we really have very few choices … something that occurred to me after my second chemo treatment. We can either ball up in a corner & cry or get up, fight & do the very best we can. Then I called Farm Basket & had them deliver to her at her home a huge gift basket filled with every kind of cake & cookie they had in the store.

I stayed very close to Beth during her bilateral mastectomy & her reconstruction & was there for her during her recovery, as she had been for me. I’d send her cookies & she’d send me roses for helping her on some particular day.

Last year while I was waiting to have my annual breast ultrasound that is always done the same day & immediately following my mammogram, someone sat down beside me in the waiting area & asked how it was going. It was Beth who had left work early to come & check on me. While she was there another woman who had just been diagnosed came into the waiting area crying. When they called me for my ultrasound, Beth told me she was going to stay a while with the woman who was alone & so very upset. She whispered to me, I’m just going to stay a little while with her & pay it forward.”

In late summer of 2012 Beth & I “paid it forward” together by helping & supporting a mutual friend through her battle with uterine cancer. Our own experiences have taught us the value of being there for friends going through personal cancer struggles… & staying there for them after recovery.

I believe Beth & I were pretty cool women BEFORE cancer, we would have been friends without it & continue to be in SPITE of it. BECAUSE of it we’ve both become even more aware of the true value of friendship.

Willy always goes with me now to get my annual mammograms because he knows that I want him there. I’ve told him that while he’s waiting in the waiting area close by I know he is there & that he is my “courage.”

Tuesday when Willy & I arrived at the Mammography Center & I was signing in, the receptionist asked, Are you Linda Smith?”  She said there had been a delivery for me & handed me one significant pink long stemmed rose wrapped in green florist paper. The card said, “All will be fine. Women just need flowers.”

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