Tag Archives: breast cancer

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

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“Get out of the damn boat, Donna!”

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Have you ever had a “feeling” stop you dead in your tracks?   Sensed that you were in peril?  That someone you love is?  Or reacted out of character, following a gut hunch?

Six years ago while on a cruise with my best friend and her family, a private tour in the Grand Cayman’s to swim with sting rays was set up months in advance.  I knew I would not step foot off the boat.   A long life of fear around these creatures was “sealed” when “The Crocodile Hunter” died of injuries sustained from one.   It was a rough day to be out, complicated further by a tour director whose boat was nothing like pictured in the ads, nor did he care how old or how many passengers he had, or if the wake was affecting his guests.   Anyway, I digress.

My girlfriend and her daughter piled quickly out of the boat.  I sat, watching.   Her daughter, who is brave beyond brave, reacted unexpectedly to the feel of the sting rays on her legs, or perhaps it was their laser sharp tails that brushed against you when they swam past you.  She started to scream, which did catch the attention of our tour guide.  “You can scream all you want, just please, stop jumping up and down”.    Oh sure, I thought.  Steve Irwin all over again!    As she climbed back into the boat I was surprised at what I was thinking.

Something had my attention.  It was silent to all but me.  “Get out of the boat”.    Like hell I will!   And after a few more minutes I sensed that this adventure was something that I had to do.    Whatever it was, call it sixth sense, sign, I “knew” I needed to get out of the boat and face this fear.   And I did.

I defied the rough seas, mouthfuls of such and made my way out to the area where my friends were.   A couple of times I thought I was going to pass out, particularly when I felt the sharpness of one of its’ tails on my legs.   I stood still, took a deep breath and prayed…  “Whatever I am supposed to do here, get from being here, let this happen and quick!”.    This inner force was telling me that I needed courage.    I remember thinking “Okay, but why THIS?”

I will not say that I ever got totally comfortable with this.  These sting rays were used to being fed, they were stars in what was an obvious tourist attraction.    The smaller ones were male, the largest ones, which we were told could get up to 400 lbs, were females.  But of course!   We were feeding them raw fish.   Sushi, anyone?

Suddenly a very large sting ray was directing my way.  Oh God, this is it, I thought!   The guide came over and showed me how to hold out my arms and actually HOLD this huge sting ray.   They really felt like wet mushrooms against my body, but again, I knew I “had to do this”.   And I did.    I remember looking into its little beady eyes.    I held it for a few minutes, let it go, and then decided I had been brave enough for the day, found my way back to the boat.

This isn’t the first time I’ve been guided by inner voice, but it was surely the first and probably the last time I would swim with Sting Rays.     For the next couple of days, reflecting on that strong urge, I knew it was about courage, but that was as far as I got.   As always, it feels good to do something that you don’t particularly think you can do, or are afraid of.  Self confidence spikes.

Flying home I thought about what a wonderful vacation it was, and I held that experience close in thought.   Who would have thought that I would do something so brave?   Childhood fears can run PRETTY deep!    Upon arriving home I had a routine mammogram scheduled the following day.   The technician took extra slides, and I knew something wasn’t right.  It was eight months prior to that when I had tested positive for the BRCA2 gene mutation.   I honestly thought I wouldn’t test positive because my sisters were far younger than me when they were diagnosed with cancer.   I think I slid past this!

Within 48 hours I walked out to the mailbox to find a letter from the hospital.   My hands were shaking as I was trying to open the letter, and answer the phone at the same time.   “Donna?   We have an appointment scheduled for you tomorrow with your Dr, and prior to that you are scheduled to come back in for more slides”.    I hung up the phone and immediately called my sister, explained to her what is going on.   We decided not to tell my parents until we had to.   But we both knew, this wasn’t just random.

I went in the next day for more slides and met with my doctor who insisted that he felt it was nothing.    I remember watching his lips mouth words “I say we sit on this, and see what the mammogram shows in a few months”.   I swallowed, a hard swallow.   “No, I want a biopsy”.     By this time both the radiologists and doctor are telling me that they would agree to do a biopsy, but neither felt it would reveal cancer.    Three days later I, and four other women were scheduled for needle core biopsy in a small hospital in Vermont.     Four benign, one malignancy.   Guess who that malignancy belonged to?

“I would like a second opinion at Dana Farber, please”.   All confidence in them had been squelched.   And so begins my journey through breast cancer.  I value my “gut” instincts.  And while I may not like what I hear, I trust there is purpose behind the sign.

Melissa ETHERIDGE “I run for life!”

I’m a big girl now -Dylan

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Today I drove to China Town, Boston to become a patient at Tufts Dental School.   My last trip down was a fiasco, forgot my wallet, etc., but this trip?  Pretty good!  As I walked around the markets, restaurants I thought of this Bob Dylan song from “Blood on the Tracks”.   http://spotify:track:4ukHl5HFRNARRnIWc4Oj83  Well, It’s “You’re a big girl now!”

Make no mistake, I’m a country girl.   I love the mountains, back roads, wild life, nature, but for today?     China Town Boston proved to be fun.   It will never make me want to live in a city…. EVER!    I feel most comfortable, safest nestled between and surrounded by mountains.   I think I always will.

On the trip home I had my front windows down and rock playing.   It was great.   I do not know where I would be without art, without music…. one in the same.     It was one of those rides where what bothered me in past, today was acknowledged, accepted.    A sense of acceptance for who I am, where I am.  A desire to just be.    Happy!  I would like to share that while on Beacon Street a convertible whizzed by me (opposite direction) and they were listening to…. ready?   Are you REALLY ready?   “The Archie’s!”.     I laughed, remembering a scene from a Sigourney Weaver movie where a serial killer left “The Archie’s” playing in a vw bug with one of their victims.  Hey,  If The Archie’s does it for them?  Good on you!  Have fun!   Sing to your hearts desire, and enjoy this beautiful day.  When I reached Vermont, like clockwork for me, I pulled over, admired the view and said to myself “My God, I live here!”    New England is beautiful.  Just beautiful.

I was thinking about my life today.  The journeys that I found myself on.   Certainly not all roses (which I’m allergic to) and whipped crème (which I love!).   It is the most difficult treks that have brought the most growth in me.    And thinking back on my career, going through breast cancer, traveling days after a surgery (or four), I did what I had to do to pay my bills, keep my house, and get through some pretty shitty times.    A phone call with a girlfriend from Newfoundland, Canada said to me “Those were the days.  I would pick up a Paintworks’ magazine looking for your latest design(s).   I sat in awe of that statement, and at the same time, shocked.    Could it be that the hardest time of my life, the time that I poured into my career, mostly out of need, could it be that these were my shining hours?   And then I smiled and reflected back on my accomplishments, milestones.    It was nice to be reminded of who I was, and perhaps still am, perhaps not.  Who knows?   And more importantly, who really cares?   It is who I am becoming that interests me most.

Great day.   Hope yours was too!      Hugz!

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?

Strength in tears

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I am a member of a group on facebook which is for breast cancer survivors.   For a while I didn’t frequent there, I think because I wanted to put the whole difficult journey behind me.   Then things happen, scares, new diagnosis of loved ones, and I fear that my distancing is cockiness.  I know intellectually it isn’t, but I find myself feeling the need to be with and relate to other pink warriors, sisters.  A few days ago I learned that someone I love, someone who is important to me and plays a significant role in my life has metastatic breast cancer.   Humbling.  How was I so fortunate to still be in remission 5 years later?

I went through the breast cancer journey single.  My mother played a huge part in my care.   I had been dating a guy for a few months.   The weekend after my lumpectomy (5 days) he was upset that I wasn’t going to drive 2 hours to be with him.   Um, really?   He did me a huge favor and ended the relationship online.    Hero!     At the time I felt so sad, hopeless, but as I walked through the daily challenges of infections, hematomas, seromas, cellulitis and for me the long 1.5 year of reconstruction, I became aware of how fortunate I was to have him end the relationship that, at that time, I hadn’t the strength to.   I think in many ways it was easier going thru this single.    I sometimes hear the demands and disappointments from others with partners, husbands and I think to myself, My God, I had it easy compared to this!    Ever hopeful it is to hear of the partners who walk with you through the journey from start to finish.   I think we are all deserving of that.

I’m not feeling well, fighting a cold.    Perhaps this has made me extra sappy or emotional, and trust me when I say the last thing I need is to be MORE emotional.  Anyway, like every other morning I logged on to read the posts.  Typically each day I will read one that brings tears to my eyes, smiles to my face, hope to my heart.    Today as I read and heard the courage, the posts, they drew more than teary eyes.   Tears were falling down my cheeks, the salty taste of some fell into my mouth.    I have often said that cancer is a journey I wouldn’t wish on anyone, but I wouldn’t trade my personal growth for the world.   As I read the posts, many, too many, who have just been diagnosed, many who have had the good fortune of remission, I thought how beautiful it is to see such support, such love to one another, having never looked in each others eyes.    I sometimes just read, sometimes “like” the post.  Lately I’ve been responding, replying, sharing my experience.   It is so healing to help another on this difficult trek.   I learn from these women daily, and I learn from myself.   Going through it you just do what you have to, what’s in front of you.   Now, five years out, looking back, I think how the hell did I get through it?  So often I hear “I hope I don’t cry”, as if it were something to be ashamed of.   I think the opposite.  I think tears  are evidence of strength, even if we feel we are at our weakest, cannot move forward.   It is a form of acceptance of our powerlessness, our need to help.  It is release of the pain that consumes us, and proof that we exist.  No matter our circumstances, good or bad, we exist and we exist beyond the pain.  Sometimes it’s just hard to find our way through it.  This is where there is strength in numbers.  If we choose to allow ourselves to be even more vulnerable than that which has us on our knees weeping.  It takes courage to succumb to a painful reality and even more to defy it, fight it, move forward.  At least that is how I feel.   Moving forward has been the hardest for me.   Accepting the loss of young loved ones, the struggles that they and I encounter.  Life isn’t always easy.  But even in the darkest of days, the smallest gesture of kindness can offer hope and strength to face that one day and perhaps?  Perhaps another.

To me the best of humanity is sharing, helping each other.   Waking up to “How can I be of help in the world today” rather than “What is today going to bring ME,,,, please bring me THIS, THAT”.    Sharing, caring, helping, I think many times some of us, myself included, dismiss the power, the impact that kindness can offer another.    We know not what another person is faced with at that moment.   Sometimes just a smile to me was enough to carry me another few hours through the challenging times in my life, still does.

Today I still have challenges to face.  Today I sometimes greet them with weakness, a desire to give up because it is too overwhelming, but then other days I stand strong and know that I can do this.   I just can’t expect myself to do it all alone.  For some of us, reaching out and asking for help from others is very hard.   It humbles us.   I have to remind myself that in doing so, in letting another help me, I am allowing them the opportunity to feel good about themselves with their kindness, help, gifts of giving of themselves.   Even still, not easy for me.

I’ve been told on numerous occasions that my blogs are sad, that the subject matter is sad.   Well…sometimes life is sad.  Sometimes our life circumstances, challenges, sorrows need to be shared.   If we look at only the fun, the good, the happy in life well, I don’t think we are experiencing life at its fullest.  I just don’t.

Today I am grateful for my health, for this day, for the food in my frig, water in my well.   I am grateful that I am here carrying the strength of yesterdays journey, and hope for today, for tomorrow.    If wishes were horses we would all ride… if only everyday could be this way.

 

Beyond Cancer

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I’m sitting in my oncologists office in the fast paced city of Boston.   A routine checkup, I have every 6 months.  The trip down was uneventful, unless you count construction and detours and a LOT of rain!  As I was driving down I wondered what my kid sister would say or think of how much I’ve grown.  Once petrified of driving in unknown places, you can only imagine the anxiety that would consume my thoughts when I had to drive in Boston.  Well, long gone are THOSE days!   My sister was my main encourager, my witness in life.   She was also a mighty fine driver when it came to driving me into places I dared not enter! Five years ago my fear of driving in Boston ended when I was making weekly visits for breast reconstruction.   Long gone I tell you, Long gone!     I will now share with you the “survivor skills” of driving in Boston.   First, play your favorite music and very loud!   This is calming and also means you cannot hear others honking at you!    Second, wear sunglasses!   This way they do not get eye contact with you so the majority of them will not risk getting into an accident and third?   Have a gps.  It may loop you around and around like musical chairs, but it can offer a sense of confidence.

On the elevator coming up to the 9th floor in the Yawkey Building at Massachusetts General Hospital I shared the elevator with a nice looking young man, I would guess in his 30’s.    He asked if I was having a good day.  I replied “Yes!  Today my oncologist is going to tell me I’m still cancer free!”  He smiled the widest grin and said “Alright!!!!!!!”  He opened his arms to hug me and I obliged.  “Do you believe in God?” he asked.   My reply, “I don’t walk a step without him!”.  What a nice encounter!

The sweetest woman just came over to offer me refreshments.   We had the nicest chat.   Pushing the refreshment cart around in a cancer treatment center as large as this, I’m sure she has seen much.  God bless her.   I know her sweet smile has always brought a smile to my face over the years.  I’m sure without even knowing it, she has helped many.   Her smile, her kindness makes a difference in the world!    Never underestimate the power of a smile, a friendly gesture!

My oncologist is running an hour behind, no big deal.   I said a prayer for those she is helping, and for the emergency this morning that backed up her appointments.   It could be ME in there!   Take all the time you want, Dr. Kuter.  You will hear no disappointing words from me!    I love my oncologist.  She is a wonderful person and likewise, doctor.   Never rushes you out, sits as long as you need her to answer questions, etc.   Besides, this hour gives me a chance to jot down my thoughts, write this blog.

As mentioned above I have experienced much growth.   I can tell you that I wouldn’t wish the journey of cancer on anyone, but I wouldn’t trade my personal growth for the world.  I’ve learned that it’s the toughest times that bring the most growth and when you come out of it, it’s amazing how perspective changes, at least that is how it is with me.  As I sit here looking around at the people sitting in this waiting room it’s obvious, no one wants to be here.   No one.   But you make the best of what you’ve got, if you’re smart that is!  Sometimes I had to stoop very low to experience humility, thus gratitude.   These days I’m grateful every day for so many things and even in that I know there is so much more I should be grateful for!

I am writing this blog on my iphone.   I am hardly efficient with this keyboard.  I probably should proof this blog but its time to close it.   A young woman who is looking mighty scared just arrived and sat near me.  I think it’s time to give back what was given to me.  I remember the fear I had when I first walked into this hospital.  I remember, also, the kindness of others, the seasoned “survivors” who shared their story with me and brought some solace to a restless mind and soul.    If the auto correct has done it’s job I am sure there will be major errors.  Just know if it said something about a sex change, it’s not true!   My oh my how messed up auto correct can be, but it can add a lot of spice too!

I sure hope you are having a great day.  I am!    Today my oncologist is going to tell me I’m still cancer free!   Can it get any better than that?

 

 

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!

 

 

The angry stage of grief….

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This morning when I walked out to my car I was surprised to see my rubbish still there.  We are fortunate to have pickup.  Well, I looked up at my neighbors, no rubbish, another neighbor…no rubbish…. What the heck?  I go about my day, full of errands, first order of business was Fed Ex, second was Motor Vehicle Department which is always a joy.  Well, guess what????  We didn’t have to wait in line and what I thought was going to be about $80 turned out to be $20!!!  Wohooooo.  Our local satellite office has such nice women working there.  Much different from the headquarters…most are stoic, never smile and have the personality of a slab of meat….

Never knowing what I am going to discuss in therapy, today’s was a shocker to me.  I suppose because I just postponed an oncology appointment to January.   My therapist was quiet, listened, asking only a few questions, one being “When was the last time you spoke about this so intimately?   My answer….  At least four years, then I thought about it…. never.  I have never shared the traumatic details, the emotional weight of going thru breast cancer, two different types, in fact.  Tears flowed down my cheeks a couple of times, as I recalled more moments with my kid sisters treatment.  The topic then turned to recollections of my own journey.   In three words it would be “It fucking sucks”.  Mine was spread out almost 2 years because of complications, infections, yada, yada.  The emotional part I don’t think I have ever dealt with.  I did what I needed to do, got through it all with a sense of humor and with the help of friends who brought me to appointments, stayed with me through surgeries, helped out as they could.   My mother moved in with me for a couple of months, which actually wasn’t as bad as I thought it would be.  She was a tremendous help.   Given that my brother was diagnosed with two different types of cancer 2 weeks to the day that I was, and having drastic exploratory and corrective surgery, she was running the roads from my house to his.

Whenever I would feel down, discouraged, someone appeared in front of me that changed my perspective.  I remember one woman, had an arm removed, had a bone in her back removed, and she was determined to stay alive, keep fighting.   What the hell do I have to complain about?  Still, I had loss that I wasn’t addressing. Fibromyalgia complicated things.  It sucked, but I tried to keep a positive attitude and also educate other women through my journey.   I realized today something significant about my being a cancer survivor.  I have never gotten angry about it.   I bounced through the other four stages of grief, but I never got angry.   Perhaps that is why I am visiting this topic now.  I am starting to feel angry, four years after diagnosis, two years after treatment and reconstruction.   Anger is something I don’t know how to do.   I am pretty easy going, let a lot go by, but when I get angry it is hard for me to get out of it.   When my sister died, I was so angry that I couldn’t even stand myself.    A few months later my older sister called me and said something like “Donna, I love you, and I believe you need help with this, with coping.  Will you please consider getting help?” I did. I did. Ironically the psychiatrist who was assigned to me inpatient was the same psychiatrist I had seen for years.   After an evaluation, he said to me… “Donna, for as long as you have been my patient you have struggled with suicidal tendencies, ideation, thoughts…  Well, you have made progress.  You are no longer suicidal you are homicidal!  He was joking, of course.  The point he was making, however, was growth.  I was no longer harming myself or punishing myself for God knows what, I was angry, I was angry with Cancer, I was angry with God, I was angry at everything. I was lost in my anger.

I am now angry for my own journey.   What the hell did I ever do to deserve this?   Why did this happen to me, to my family?  I had convinced myself, well I still believe, that part of the reason was to educate women on early prevention, detection.  With the large number of women I encounter I could possibly help others.   Still, I’d rather have just educated them on painting, but this journey quickly became a side cart to wherever I was, wherever I went. I do not wish, nor will I stay in this anger.  I cannot possibly be angry, peaceful and serene simultaneously.  I have come so far, I have learned so much, I have gone through enough that I just want peace.  I want peace and serenity.   No matter how much weight I gain, or lack of exercise I get… my New Years Resolution for the rest of my life will be “Peace and Serenity”.    It has been a long journey to get here.  I still have shaky times when it flies out the window, but I have reminders all over my house.  The physical pain I feel on a daily basis reminds me, too, that all I can do is my best, that I have walked through the jungle jims of hell, and I am still here.  All I want is peace, peace and serenity.  I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for anything in the world!

My sister gave both my brother and I a medallion.  It means much to both of us.  This was the only thing my brother wanted to take from his car, the only thing he was worried about.  The other day I thought about mine and wondered where it was.  I hadn’t seen it in a couple of months.  Hmm, I’ll have to look for it when I get home.  Well, a few minutes later I pick my mother up at her apartment and she says “Hold out your hand, I have something for you.  I found it in the car, cleaned it up for you”…it was my medallion. I smiled, looked up and said “Thank you!” I am always given what I need.  I am always given what I need.  The timeliness of this is not uncommon in my life.   It’s rather nice, spiritually validating to me.

Saint Peregrine is on the front, and on the back, engraved artfully, beautifully reads this:

CANCER IS LIMITED
It cannot cripple love It cannot shatter hope It cannot corrode faith It cannot eat away peace It cannot destroy confidence It cannot shut out memories It cannot silence courage It cannot invade the soul It cannot reduce eternal life It cannot quench the spirit It cannot lessen the power of the Resurrection.

I will leave you with one of many comical episodes that I went through when I was doing all I could to fight this disease.   When I came home from the hospital after my second surgery (bilateral mastectomies, reconstruction), I was on some very heavy pain meds.   Two friends had stopped over to visit, mom made them lunch and they were sitting in the kitchen.   My mom asked me to come out and sit and try to eat something and visit with Robin and Bob. I did. A couple minutes into the conversation my friend Robin asked “Now what exactly did they do to you?”  I explained that they cut out the nipple and go from there.   She asked “Well, what did they do with your nipples?”   I looked at her and responded very quickly “They sewed them on my ass for traction!”   My mother said “It’s time for a nap!”

Oh and PS….. As I drove back into town approaching my humble abode I noticed my neighbors rubbish was out…. Um…. I guess I put it out a day early!

Aside

This morning when I walked out to my car I was surprised to see my rubbish still there.  We are fortunate to have pickup.  Well, I looked up at my neighbors, no rubbish, another neighbor…no rubbish…. What the heck?  I go about my day, full of errands, first order of business was Fed Ex, second was Motor Vehicle Department which is always a joy.  Well, guess what????  We didn’t have to wait in line and what I thought was going to be about $80 turned out to be $20!!!  Wohooooo.  Our local satellite office has such nice women working there.  Much different from the headquarters…most are stoic, never smile and have the personality of a slab of meat….

Never knowing what I am going to discuss in therapy, today’s was a shocker to me.  I suppose because I just postponed an oncology appointment to January.   My therapist was quiet, listened, asking only a few questions, one being “When was the last time you spoke about this so intimately?   My answer….  At least four years, then I thought about it…. never.  I have never shared the traumatic details, the emotional weight of going thru breast cancer, two different types, in fact.  Tears flowed down my cheeks a couple of times, as I recalled more moments with my kid sisters treatment.  The topic then turned to recollections of my own journey.   In three words it would be “It fucking sucks”.  Mine was spread out almost 2 years because of complications, infections, yada, yada.  The emotional part I don’t think I have ever dealt with.  I did what I needed to do, got through it all with a sense of humor and with the help of friends who brought me to appointments, stayed with me through surgeries, helped out as they could.   My mother moved in with me for a couple of months, which actually wasn’t as bad as I thought it would be.  She was a tremendous help.   Given that my brother was diagnosed with two different types of cancer 2 weeks to the day that I was, and having drastic exploratory and corrective surgery, she was running the roads from my house to his. 

Whenever I would feel down, discouraged, someone appeared in front of me that changed my perspective.  I remember one woman, had an arm removed, had a bone in her back removed, and she was determined to stay alive, keep fighting.   What the hell do I have to complain about?   But I did.   Having fibromyalgia complicated things.  It sucked, but I tried to keep a positive attitude and also educate other women through my journey.   I realized today something significant about my being a cancer survivor.  I have never gotten angry about it.   I bounced through the other four stages of grief, but I never got angry.   Perhaps that is why I am visiting this topic now.  I am starting to feel angry, four years after diagnosis, two years after treatment and reconstruction.   Anger is something I don’t know how to do.   I am pretty easy going, let a lot go by, but when I get angry it is hard for me to get out of it.   When my sister died, I was so angry that I couldn’t even stand myself.    A few months later my sister called me and said something like “Donna, I love you, and I believe you need help with this, with coping.  Will you please consider getting help?”    I did.   I did.

Ironically the psychiatrist who was assigned to me inpatient was the same psychiatrist I had seen for years.   After an evaluation, he said to me… “Donna, for as long as you have been my patient you have struggled with suicidal tendencies, ideation, thoughts…  Well, you have made progress.  You are no longer suicidal you are homicidal!  He was joking, of course.  The point he was making, however, was growth.  I was no longer harming myself or punishing myself for God knows what, I was angry, I was angry with Cancer, I was angry with God, I was angry with anyone else who crossed my path.    I got stuck in that anger for months.   What this visit was labeled was “Mood stabilization, depression”.   Yeah, I needed some mood stabilization, for sure!

Now I am angry for my own journey.   What the hell did I ever do to deserve this?   Why did this happen to me, to my family?  I had convinced myself, well I still believe, that part of the reason was to educate women on early prevention, detection.  With the large number of women I encounter I could possibly help others.   Still, I’d rather have just educated them on painting, but this journey quickly became a side cart to wherever I was, wherever I went.

I do not wish, nor will I stay here.  I cannot possibly be angry, peaceful and serene simultaneously.  I have come so far, I have learned so much, I have gone through enough that I just want peace.  I want serenity, and I want peace.   No matter how much weight I gain, or lack of exercise I get… my New Years Resolution for the rest of my life will be “Peace and Serenity”.    It has been a long journey to get here.  I still have shaky times when it flies out the window, but I have reminders all over my house.  The physical pain I feel on a daily basis reminds me, too, that all I can do is my best, that I have walked through the jungle jims of hell, and I am still here.  All I want is peace, peace and serenity. I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for anything in the world!

My sister gave both my brother and I a medallion.  It means much to both of us. This was the only thing my brother wanted to take from his car, the only thing he was worried about. The other day I thought about mine and wondered where it was. I hadn’t seen it in a couple of months. Hmm, I’ll have to look for it when I get home. Well, a few minutes later I pick my mother up at her apartment and she says “Hold out your hand, I have something for you. I found it in the car, cleaned it up for you”…it was my medallion. I smiled, looked up and said “Thank you!” I am always given what I need. I am always given what I need. The timeliness of this is not uncommon in my life. It’s rather nice, spiritually validating to me.

Saint Peregrine is on the front, and on the back, engraved artfully, beautifully reads this:

Cancer is limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the Resurrection.
I will leave you with one of many comical episodes that I went through when I was doing all I could to fight this disease. When I came home from the hospital after my second surgery (bilateral mastectomies, reconstruction), I was on some very heavy pain meds. Two friends had stopped over to visit, mom made them lunch and they were sitting in the kitchen. My mom asked me to come out and sit for a minute, try to eat something and visit with Robin and Bob, so I did. A couple minutes into the conversation my friend Robin asked “Now what exactly did they do to you?” I explained that they cut out the nipple and go from there. She asked “Well, what did they do with your nipples?” I looked at her and responded very quickly “They sewed them on my ass for traction!” And then my mother suggested it was time for a nap!

Oh and PS….. As I drove back into town approaching my humble abode I noticed my neighbors rubbish was out…. Um…. I guess I put it out a day early! 🙂

The anger stage of grief

Cancer Support Group, a funeral, and the unveiling of emotions

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Today I spoke with the facilitator of the Breast Cancer Support Group down at Cancer Connection in Northampton, MA.  I am joining this group.  I will not be able to attend for a couple of weeks due to my teaching schedule, but I plan to work my new schedule around this… I need this for me.

I have read that it is very common to hit an emotional rollercoaster when you are almost through your treatment or finalizing your care.  I believe this is and has been happening to me for a few weeks.  When I call my Dr’s office to set up or change an appointment and they answer “Mass General Cancer Center” my muscles flinch, my skin crawls and my throat and chest become so tight that I have to remind myself to breathe.   My life has changed, it changed the day I was called back in for more images from the mammogram in March of 2009 and it certainly changed after the biopsy came back showing two types of cancer.  Even typing this right now I feel anxiety.  Funny, for the past what? 17 months I have been fine, really.  A couple rough days, but all in all I have dealt with it all with very little tears.  Now it seems the tears come easily and fear keeps knocking on my chest, my head wanting to take up permanent residence… I resist, I fight it… I am exhausted.

Tonight I went to calling hours for my girlfriends mother.  She was only 62.  Stacey, my girlfriend is 10 years younger than me.  She is a wonderful person with a huge heart, a great mother, wife, daughter and friend.  As my friend Mark and I neared the porch of the funeral home I had flashbacks to the last funeral I went to…My Uncle Len’s.  He was a jolly loving man who always had a huge smle on his face.  I adored him.  I remember specifically walking up to the porch of the funeral home at his service and all the while I was walking up there I was feeling unbelievable grief.  When I reached the porch and saw my cousin Mike, it hit me, I am NOT at my sisters funeral again, this isn’t about me… this is about my Uncle, my Aunt, My cousins, their children…. I don’t really know how to explain it better than that.  Just that I was living in so much pain the months prior since my sister died that it was all I knew.  It consumed me.  Embracing my cousin who burst into tears was the beginning of my healing.   Everyone experiences loss and it is so hard.   Tonight my friend Stacey, her dad, her sisters, their children, her aunts, uncles were there in celebration of Darlene Hutchins life and also to say goodbye.  My heart went out to all of them.    Loss is so very difficult to go through and grief, well that is another process entirely.  Nor an easy one at that.

A friend posted a very well written article on the topic of cancer which I read.  I could relate on many levels.  I forwarded this to another friend whom is also a cancer survivor.  Not to dwell in the diagnosis but  to relate.   This is why I am joining the Cancer Connection.  I need to be with other women who have and are experiencing what I have and am going through.  I need to talk about this with others who understand how I feel.  I  am so fortunate, I have MANY people who love me and want to help but unless you have been here you cannot fully understand and even if you have, everyones circumstances are different.

I was reminded today of the immense trauma my body and soul has been through over the past 17 months.  I remember feeling subhuman after the double mastectomies and when the expanders were placed.  I have thought about that lately as I have experienced touch again, human touch.  It is such an amazing feeling when you have not had it for so long, and particularly after going thru such traumatic body changes.  It has really reawakened my body.  It’s a nice thing.

I hope you never have to experience anything like this but if you do?  I hope you have the love and support of family and friends that I did.  I was one of the lucky ones.  I was surrounded with people who wanted to help.  And going thru this without a partner strengthened my self confidence, self esteem… but damn it’s one hell of a way to get it! 🙂