Tag Archives: ovarian cancer

Acknowledgement

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For those of you who have experienced the loss of someone close to you, you will understand what I am writing about.     It never goes away, at least not for me.

Fourteen years ago today my kid sister died at the young age of 38.   She had been diagnosed just ten months before with Ovarian Cancer.   I’m not sure what hurts the most.   The journey through it, where we did our best to comfort her and bring her to any treatment allowed, or the endless missing.  I think it’s the missing.

Fourteen years and I still cry when I acknowledge this.  But if I don’t, it makes its way through illness or pain, so it’s best to nod to the memory than deny it, at least for me.

At 37 she and her partner had just bought a house and had moved in just two weeks prior to the emergency surgery that was previously scheduled a week or two later.   I remember it all so well, and I’m trying hard to not go there today.  To just honor her, and tell you what a great person she was.

I can tell you that she worked very hard and knew how to play.  She had a boat, snowmobiles, a toy for every season.   She loved to fish, to play sports, and was a natural athlete.   She had an old soul, I think about this often, wondering if this played a part in her short life.  A natural observer, she was always warning me when to shut my big trap, or when I had gone past “obnoxious” she called it.   Laughter through tears is my favorite emotion.  It’s one that I experience a lot when I think about her.

One would think that after fourteen years you wouldn’t on occasion say to yourself “I have to call her, and tell her this!”    It happens less each passing year, but it still happens.

She was my dads bud.  I mean that with every part of my being.  She loved hockey, she loved fishing and shared these things with our dad.   We all share memories of this with her.   It was rather comical last year when my father admitted one day “Okay, Darlene was my favorite”.   The three of us laughed until tears came out of our eyes.  “What?”  “I’m sorry” he said.   “Um dad, we have known this FOREVER!”    I think he really believed it would shock us.   NOT.   I was sitting beside her on her couch the day she learned she was not going to recovery from this, and she called dad to tell him.  “I’m sorry, dad, I’m so sorry”.

So it was on this day that my, our lives changed.  For years I described things as “happened before she died, or happened after she died”.   I didn’t mean to.  It was just a game changer.    My life changed.  I changed.

I remember asking my cousin Marie, who came down to sit with me just hours after I learned she had died “How am I supposed to stop loving her?”   “You never will, Donna” she said.   How did she know?    It was through my sisters death and living life without her that I learned, love doesn’t stop just because someone you love died.   Nor does life stop, as cruel and vulgar as it seems at the time.   “How can the birds still sing?  How can people laugh, how can anything go on when my life has just come to a screaching halt?”   But it does.  But I have learned something beautiful within all the sadness and that is that love doesn’t ever stop, for me it continued and miraculously grew and still does, all these years later.

So on this day, I acknowledge that hope changes.   At first you pray for a cure, you pray for treatment to work, and then when that stops working, you pray for strength and a new doctor, another treatment, and more.   That is until you realize the suffering is going on too long, and you start to pray for God to be merciful with her, with them.  Please, take her soon.   Yes, hope changes.

I miss you every day.  There hasn’t been a day in fourteen years you’ve been gone that I don’t think of you.  You are part of me, you always will be.    I can still close my eyes and see your face, the little tiny mole above your eyebrow, and see that beautiful smile that radiated wherever it was shown.

Time does teach us how to coexist with such loss, but it doesn’t heal the broken heart.  I think because even when you pray for an end to the pain, and there is relief when that happens, the missing?  It never stops.

 

(end note:  I wrote this and posted it on 4/8 but for some reason it’s showing the 9th which I find interesting, because I actually found out about it just minutes after midnight on the 9th)

 

 

Be your own advocate

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Seven years ago today I walked into Massachusetts General Hospital with a friend from NC who flew up to be with me, and I had a double mastectomy.    Another friend picked handled the logistical part of the day and many more to come.

With a diagnosis of two different breast cancers at the age of 47, a lumpectomy in April which unfortunately they did not get clean margins, I went 12 weeks fighting insurance to get my mastectomies.   It was hell.

I carry a gene mutation, BRCA2, which all of my sisters do as well.  Most of you who know me know, my youngest and oldest sisters died of Ovarian Cancer.  My only living sister is, too, a breast cancer survivor.   This mutation put me at a very high risk for both breast and ovarian cancer, and a handful of others.   After my kid sister died at 38, and my sister paid the enormous fee to have the first genetics testing, I thought for sure I had dodged it.  My sisters had had their cancers much younger than I.  Unfortunately, when I tested positive for the mutation I was devastated.  More so then when the actual diagnosis of cancer came in.  That was expected.  Just didn’t think it would be 8 months after testing positive.

However, with that said, after insisting for a second opinion at MGH, it was apparent from my mammograms that the first cancer was missed for a couple of years.   Also I want to note, in March when I went for my routine mammogram and was called back for more images, both my sister and I knew, my fate was laid out.     They called me in, did more images, and showed me the images and were quite hesitant to do a biopsy.  “Let’s just watch it for six months”.   I insisted upon a biopsy.  That was with MUCH PROMPTING from my sister, Karla.    “Okay, we’ll do it, but I bet it will be benign”.

The next Monday morning four women went in for biopsies at the small hospital here, and one malignancy came out of it.  Guess who?

The point of my sharing this is to encourage ALL of you, to be your own, best advocate.  Not just with breast cancer, but with any health problems.  Follow your gut, know your risks, get preventative testing, don’t ignore or put off for ANY reason!   In cancers, we all know by now, early prevention saves lives.

It was on this day that I went through the emotional surgery to have my breasts removed, and reconstruction started with expanders put in under my chest muscles.

I can say I am a 7 year cancer survivor.  But I don’t take that for granted.   My life has changed immensely since that day.  The journey of cancer made me a better person, and gave me new perspective.  I know it’s a cliche “Cancer made me a better person”, but I feel that way, and I am one of the fortunate who BECAUSE I INSISTED ON A BIOPSY and BECAUSE I INSISTED ON A SECOND OPINION at Massachusetts General Hospital, am here today to tell my story.

A big thank you to all my many friends who helped me through the almost 2 years of treatment.  It was a long, painful journey with many complications.   Today, I have complications with the implants, and I’m going to have to address that soon enough.  At 47 and single, I wanted to have reconstruction.  Now almost 55 I wonder if I will just have them removed.  My choice, time with tell.   I do know that my breasts don’t make me the woman that I am, and I really do like who I am.

Today I celebrate 7 years cancer free.    Please heed my words and be your own advocate, insist on second opinions, change doctors if you have to.  Long gone should be the days when my grandparents were loyal to their doctors.   Insist your doctors be loyal to you!

Love to you all

My kid sister

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51 years ago today, a beautiful soul was born into this world.    She was as cute as a button, and a very happy baby.darlene3 001

My sister had an old soul.   She was chronically wise.  A natural observer, she would often sit back and watch me open my big mouth, or do something that would inevitably get me into big doo doo’s.   We were 2.5 years apart in age.   When it came to common sense, she was born with it.

She had the biggest brown eyes, beautiful woman.   She had a great smile and she wore it more than most.   She was a happy person.  A hard worker, who equally played hard.   She lived wisely, she lived well.

It has been twelve years, maybe more since she was taken out of this life, too young.   Too young.   But when I say that, and I do feel that way, I am reminded of one of the many trips to Dartmouth Hitchcock for treatment, when we walked into the chemo ward and there was a child, a baby really, being infused with toxins to save his life.   “I guess I don’t have anything to complain about, do I now?”    I think of those words often, not to dwell, but to remember her strength, and to learn from her courage, her wisdom.

She died 10 months to the day of diagnosis, ovarian cancer.   She was 37 at diagnosis.    As I sit here typing this, all these years later, the journey through treatment, the painful truths that were worded carefully, revealing her fate, fills my chest cavity with void, with pain.    I don’t believe I will ever “get over” this.   And that is okay.   Death is a part of life, an important part.   I have come a long way in my grieving.   I seldom cry anymore, tonight I am.    Because I’m remembering the difficult journey she walked, and she did it amazingly well.  I never heard her complain.  Ever.  Please don’t say “I’m sorry”.    I was so fortunate to have known her.

I remember walking into Higgins Hospital in Wolfeboro NH, she was getting a transfusion.   I walked into her room, and she was white as a sheet,  double fisted in pain.   I asked when her meds were due.   “I could have them at 3pm” (it was 3:45)   “They’ve been really busy”.    I stood up, walked out into the corridor and down to the nurses station.   “My sister is in pain, her meds were scheduled for 45 minutes ago”.   “Yes, we’ll be right there”.    5 minutes later, 10 minutes later.  I walked back out into the corridor, this time offering no kind tone “MY SISTER NEEDS HER MEDS….. NOW!”     Within a couple of minutes she was given her meds.      I sat beside her bed, rubbing her arm, talking to her, trying to distract from what was obviously horrendous.  But you don’t really distract from that, do you?  Can you?    “Donna?”   Yeah, I said.  “Thank you”.    If you knew my sister, this spoke volumes of what her pain level was.   She didn’t like discord, and certainly didn’t want to ruffle any feathers.   She would roll her eyes at me when I would.   Night, day.

This woman meant the world to me.  If you have sisters and are close, I needn’t say more.  She lives on, in my heart, and my memories have faded some, but not drastically.    I can close my eyes and envision her sparkly brown eyes that lit up our fathers eyes, soul.   I remember that she didn’t like to try on clothes, so when we shopped, I would slide the pant leg up my arm.   If it came to the end of my fingers, they would fit her.   Laughing now.

Sometimes I think about the loss I have experienced, and I am not seeking sympathy, but reflecting on my life, on the lives of those I’ve loved and lost, and I just cannot believe I survived it.   But when I wrote her eulogy, I vowed to live every day of my life to the fullest.  I wanted to live a good life, to live a purposeful life, in her honor, in her memory.   Sometimes I think I’ve fallen short, I don’t think she would agree with that.  Sometimes I feel my best isn’t good enough, and it is.   I can hear her saying that to me.   “It is!   All you need is encouragement”.

So on this day, her birthday, I am going to do something kind for another, randomly, for her.   And I am going to do something kind for myself.    I am a better person for having her in my life for 38 years.   I know I, we, truly were fortunate to have her in our lives at all.   She was everyone’s favorite.

If you want to do something kind for another today, in her memory, I would love that, she would love that.  Remember, kind can be just a smile!   I will light a candle, and I will follow the ritual I have done since she passed.   It is a special day.   Today, 51 years ago, a beautiful soul was born into this world.  I know, because I was fortunate and blessed to call her my kid sister.  Today I, my family, will celebrate her life.

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I HATE cancer

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If I were to share with you my families plights with cancer, I doubt you would believe me, or you would say “Where did you grow up?  It has to be environmental”.   Well, yes, I do believe some cancers are environmentally induced.  I also understand too well the mutations of genetics.   My family has two gene mutations.  TWO!   When I was being treated at Mass General Hospital with breast cancer I was tested for HNPCC (Lynch syndrome) to which I was negative.   Well, that’s a saving grace for my sister and I.  My brother?  Not so lucky.  Anyway, the genetics counselor said “Did your parents meet at a hereditary cancer convention”?   Which was really a stupid question because it wasn’t until the 90’s when these two were identified to the world.

The past couple of months have been challenging, at best.  My mother was diagnosed with kidney cancer.   She had one kidney removed six years ago for cancer.  This is another primary, all total THREE primaries for her.   There has been delays here and there, and my sister and I are grateful that her grade is 1 (slow growing).    It has been one thing after another in what should have never happened.  Finally, she has an appointment tomorrow at Mass General Hospital, a consult with a doctor who specializes in a certain treatment that is not available locally, including Dartmouth Hitchcock.   I cannot go.  My brother is bringing her as I have a class to teach in Massachusetts.    This will be the first time I have not been with her through her appointments.   I’m told by my sister, close friends and therapist that this is okay.

Tomorrow will we find out treatment?  Dates?  I’m not holding my breath.  With 9 rounds of battle against cancer, I have learned not to expect answers when you want them.  It doesn’t happen that way, at least not for me and my family.   I also made another difficult but important (for my future) to continue with my plans to go to CA for a convention.    I have no idea where my mom will be, hospital? home?  I won’t go any further than that.    I have been handling all of this well, living in the moment.  Today, however, not so much.  It began last night actually.    I sat in a meeting at the local hospital and on the white board was a drawing of a person and certain “parts and fluids”.   The words, lingo came right out of my past.  I didn’t realize until today how much it bothered me.  I just knew I wanted to bolt, but yesterday.    Today I am very unsettled, anxious and struggling with it all.

We are talking about TWELVE primary cancers in my immediate family.  Fucking TWELVE!  My youngest and oldest sisters lost their lives to ovarian cancer, an insidious awful disease that unless its caught early, and there really isn’t measurable tests like there are with breast cancer for early detection.   It’s a savage cancer.  Not that any cancer is great.  I FUCKIN HATE CANCER.

I have a fairly good perspective on things.   As I’ve watched both of my parents age and deal with health issues, I remind myself how fortunate I am to still have both parents.  I am 52.  I still have both parents.  My sister only lived 38 years and even as difficult as that is, there are much worse cases.   Children whose lives were shortened by infliction of this disease.  I remember one chemo treatment with my sister.    Obviously, upset, anxious, we walked into the chemo ward and there sat a child getting chemo, no older than 6.  We looked at each other and said “Guess we don’t have it so bad”.

Notice I refer to “we”.   I believe there are more “survivors” than the patient.  I consider those who are left behind, caregivers, family, friends, those close to the passing of a loved one who has succumbed are also “survivors”.  It isn’t easy to walk this difficult trek with those we love.  I found it easier to deal with my own battle with breast cancer than my other siblings battles.   I think somehow I felt I had control over it, I don’t know.  None of it is easy.   It’s hard to walk beside them, sometimes carrying them, and being strong for them, being hopeful, encouraging when sometimes, in the circumstances of both sisters, there really was no hope.   Not for survival.

It’s so important to have friends, family, and probably a friend would be best, when they/we are going through treatment.  I heard entirely different things than my sisters heard, my mother, my brother.   Even with the future pictured on a scan hanging on the wall in front of you, you grab onto hope.  Hope changes.  And for those who don’t understand what I’m about to say, I have to say, good for you and I hope you never understand this.  Hope can be debilitating.   Pessimist?  I don’t think so, not at all.   But for many, myself included, hope can be frightening, paralyzing.   That’s as far as I’m going with that explanation.

So, if you will keep my mother in your thoughts and prayers as she embarks on new care now in Boston, MA.   If you will keep my family in your thoughts and prayers as we embark on the latest cancer diagnosis, thus battle I know we would all appreciate it.

I know this isn’t about me.  This is about my mother, her options, choices.   Much more immature when we went through this with my kid sister, I was brokenhearted and I was in the throws of my own pain with it.   I was there for her, I did right by her, but I so wish I could go back and say some things to her now as I look back on it all.    But we can’t go there, we can’t get back our yesterdays.  If only.

Now I shall go and get busy again.  I’ve vented, I’ve purged, and I am quite confident that this will be a sleepless night for my family.  What tomorrow brings, we know not.  What we do know is the opponent is a fucking awful disease that has taken so much from us already.   Is that the right attitude to have? No, I know this.  But for today, for the first time since we learned about this diagnosis, I am angry.  I am very angry.

I do want to end this blog with a plead to all.  EARLY DETECTION SAVES LIVES.   Get your mammograms, prostate exams, colonoscopy, endoscopy, and whatever other test keeps you in the know.  Knowledge is power.  Empower yourself with knowledge.

Did I say I fucking hate cancer?

So this is anger?

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As I sat down in my usual spot in my therapists office I said “I don’t want to be here”.   She smiled…”Well, let’s talk about that!”

The night before I had been in touch with a cousin whom I haven’t seen in decades.  I wanted to let her know about our Uncle’s death and to talk about family genetics, thus, cancer history as I could let her know what we’ve been through which may and hopefully help her, her brother and children with early detection.    Not sure if I would hear from her, I was pleased when I saw she had replied to me.    Good old facebook.

Her reply resonated through my entire body and settled into my bones.  Her brother, my cousin, died in 2003 of cancer at the age of 48.  This is the same year my kid sister died at the age of 38.     It was too late to call my mom but I did.  When I told her she was really quiet.  Mom?  “Yeah I’m here, that is just horrible, just horrible”.

I walked around my house for a few minutes not being able to settle into a chair.   I felt numb, my chest was heavy and numb.
When I sat at the computer to pound out my emotions, my feelings, or to at minimum try to understand them, I couldn’t keep up with what was flashing in my head.    I was reacting physically, I felt like I had been sucker punched.   Why am I reacting this way?  Not that it wouldn’t be difficult to hear a cousin died of the same hereditary disease that has grabbed my family with its sharp talons.  What am I feeling?  I could not figure out what emotion, what feeling I was having.   A fleeting thought went through my head… “Anger?”

Stoic, and in a monotone voice I shared with my therapist what I had learned about my cousins.   I felt my foot tapping and could feel my jaw clench as I was speaking.   I love my therapist, she is great and has helped me so much in learning to first identify my feelings, and how to cope with them.    She asked the questions I was afraid she would ask, which I guess is why I didn’t want to be there.   She leaves no stone unturned, trust me.   Still feeling sucker punched only worse, I thought out and quickly planned my route to the bathroom should these feelings come UP.  Sure felt like they were going to.

Anger?  Do you feel angry?   I thought about it as I replied “maybe”.  The word that came out of my mouth and surprised me was “Powerless”.   I rarely use that word and it rings the tone of Step 1 in 12 step program.   I’m not even sure all that was said and by who, but I remember the words “unjust, unfair, cruel”.    With this I learned that I was angry.   “No wonder you didn’t couldn’t identify the feeling, Donna, it’s new for you!”  How cruel that my cousin, too, died too young.  How cruel that his sister has had to walk through life the past 10 years without her brother, her only sibling.   Another mother out living her child, having to bury him.  How insidious.

Oh trust me, I have had hissy fits and I know how to clean out a refrigerator and cupboards to help buffer the unpleasant feelings.  What I didn’t know was first, how to describe, name the emotion, but also, do so without running from it, stuffing my face so as not to feel it.   I am so not good at anger.  When my kid sister died I was hospitalized a few months later for “mood stabilization”.   I was miserable.  Broken and miserable.   I knew I was angry but I didn’t know how to deal with it.  I also didn’t know how to be “angry at God” that he let this happen to my family, cousins included.

I took a deep sigh and sat back in my seat.  “Yes, Yes I am angry.  I am very angry!”    Walking out of her office I still felt sucker punched, my jaw was still clenched, but I wasn’t as confused as I was when I arrived for my appointment, feeling like I had jumped on a hamster wheel and was stuck on it.  The more I thought about it the faster it went.  Both my therapist and I were pleased with my thoughts, decisions, to wait to talk to my cousin until I could pull it together.

We have made arrangements to talk this evening.  I am looking forward to talking to her, catching up, being in each others lives.   Perhaps I have information that may help her as we both swim in a gene pool you wouldn’t want to put spent fuel in.  Perhaps she will help me.  “Perhaps”, said my therapist, “this will help you both heal”.  Well, wouldn’t that be something!

I remember having the genetics testing done at Massachusetts General Hospital (MGH).   The doctor, quite serious, asked me if my parents had met at a medical convention, genetics.   I thought that was a stupid question given that I was in my 30’s when scientists identified the BRCA mutations.  Later, HNPCC or another name “Lynch Syndrome” which is hereditary colon rectal cancer.  I remember the look on the doctors face at MGH when I handed him the family history that my sister studiously gathered for her, the first in my family, gene testing.   It couldn’t have been more clear had his jaw been sitting on his chest.  I remember when the two idiot doctors in New Hampshire that stood over my brothers hospital bed 2 weeks from the day I was diagnosed, and told me that his diagnosis of two cancers had nothing to do with a mutation.   I cannot tell you the anger I still feel today.   I also didn’t hear them apologize when the tests came back from his second opinion at MGH and the first test they did was Lynch, and he tested positive.   Their lack of knowledge became ignorance and arrogance when they refused to listen to what knowledge we had. Breast cancer (2 different cells), ovarian cancer, uteran cancer, ureter and kidney cancer, colon, colon rectal, prostate cancer.   Every member of my immediate family including my parents have had cancer.   The list above is the cancer portfolio in MY immediate family.  ANGER!   How dare this doctor have the audacity to not even LISTEN to all that my family has been through, hence learned.  Five years later, to this day, I still could slap the shit out of their faces when I think about it.  Long gone should be the days when patients are loyal to their doctors, not themselves.  Long gone should be the days when a doctor’s ego gets in the way of a patient’s diagnosis and best treatment.    As angry as I remain I hope for him, a better doctor than he should he find himself on the other side of the patients table.

My parents have never been testing and have no plans to.   I think it would be futile and only serve to haunt them as to whom or which passed down the potential death sentences to their children.    With cancer on both sides of my family we have, and our doctors have guessed which came from where but of course there is no certainty unless testing is done.    What would be beneficial from their testing is to let family members from each side know which or what or both mutations came from, to know their risks, thus assist in prevention, early detection.

Today I’m more settled than I was yesterday.   I spent several quiet hours by myself yesterday thinking about what I had learned from my cousin and in my therapist’s office.   Tonight I will talk to my cousin and even though much of the news we have is sad, I hope we are able to find laughter for pockets of hope, for health.

KNOW YOUR RISKs!

 

 

A decade later …

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It has been 10 years this week since my kid sister, Darlene, took her last breath.   It seems like a life time since I have seen her, but just yesterday, the trauma.    I hear so often that time heals.   I don’t agree.   A large part of my heart was ripped out, it has never healed.  I do believe that time teaches us  how to coexist with the reality, the pain.

Diagnosed with ovarian cancer at the age of 37, she died 10 months to the day later at the age of 38.  It was a travesty for all who knew and loved her.    After she died I remember thinking “How am I supposed to stop loving her?”   I think now what a senseless question because I have since learned… you NEVER stop loving them.  In fact, for me my love for her has grown.

My sister was an old soul.  She was an observer of sorts.  As a kid she would stand back and watch while my cousin Marie and I would do something, lip off, for example… She and my cousin Tina would look at each other, look at us and just “watch”.   I think, in family, she was most like our cousin Steve.  Again, quiet, observing… they would shake their heads and watch out of the corner of their eyes, sometimes with raised eyebrows…  I’m sure they were thinking “Are you nuts?  You’re going to get in big trouble!”

Darlene was a good person.  She was honest, a woman of her word, kind and had a great personality and sense of humor.   She loved to fish, snowmobile, play hockey…  A natural athlete.    She loved water and lived on a lake for the past decade and a half of her life.    She worked hard and played hard.  She loved outdoors.  She enjoyed life.

Ten years and the tears still fall.   I haven’t mentioned this anniversary to anyone in my family, as I’m hoping they could skate by it without the painful memories.   My sister, Karla, was one of her caregivers for the last few weeks of her life.  She was with her when she left this world.   I know she has thought about it, she does every year.

Next month will be the 2nd anniversary of my oldest sister’s passing.  She died at 56 of ovarian cancer.   In my almost daily talks I have with my sister I told her today I knew she was there waiting to greet Karen.   That was who she was.   She did for others and had respect for herself as well as others.

There isn’t a day that goes by that I don’t think of her.  Some days are diamonds, some days are stone….   Sometimes I laugh out of control, other days, like today, the tears fall.  Still, today I am also able to smile and laugh at aspects of her, of our life.

For me, I have learned that there isn’t anything quite like siblings.   Most of the funniest times of my life were with my siblings, or family.

Say “I love you”, say what you need to say today as you never know what tomorrow will bring.   As mentioned earlier, I still talk to her almost daily, but I miss her eyes, her voice, her hands, her short athletic legs that in the summer looked like spoiling bananas from all the bruises from activities.  I miss her guidance, encouragement, I miss her laugh, her sense of humor, her view points.  I miss her, all of her.

 

One year later…. a survivor

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I run for life by Melissa Etheridge

Last Friday marked one year since my diagnosis of breast cancer(s).   I am a survivor.  I am strong, I am alive, I am grateful for my life.

In October I will walk proudly with the survivors at the Breast Cancer Rally “Flames of Hope” in Providence, RI.  No doubt, I will cry in memory of those I have lost to this disease…not just breast cancer.

Thursday marks the 7th anniversary of my sisters passing.  She was 37 at times of diagnosis for Ovarian Cancer.  She died 10 months later at 38.  It has taken me 5 or 6 years to accept her death.  I will spend my lifetime missing her.

Get your mammograms, paps, examinations.  Have your husbands get their PSA’s… don’t delay.  Take care of yourselves… be assertive with your Dr’s… Be your OWN advocate.  LIVE STRONG!