Maybe I’ll get breasts; maybe I won’t.

On the third day of 2006, at the age of thirty-two, I had a bi-lateral mastectomy. Because of the characteristics of my cancer the surgeon was unable to spare any skin or tissue on my left side and we decided it made sense to wait until after radiation to consider reconstruction.

Now almost seven years later, I still haven’t had reconstruction. Part of me needed to live without breasts. It was the same part that, when I lost my hair during chemo, wore a scarf instead of a wig. I didn’t want to hide my diagnosis. To hide seemed to say I was ashamed. To be ashamed seemed to place blame. To place blame was to say this was my fault and that was not something I believed.

My cancer diagnosis wasn’t my fault but it became an essential part of who I was, of my story, history, identity.

When treatment was finally over I ran as fast as I could from the oncology wards of Seattle. I worked on recovering my health. My husband and I adopted two children. I wrote a book and when it was published I promoted that book. It’s been a busy decade. As one therapist said, someday you’ll look back on these years and have no idea how you survived so many life changes packed so tightly together. Totally.

One morning when my daughter was three she stood outside my shower, touched her nipples and said, Mommy, do you have buggy bites? I told her I did not and explained that before she was born I was sick and to help me get better the doctors had removed my nipples and breasts. I tried my best to help her understand that most women did have nipples, that she was perfectly normal, but by then she was making faces at herself in the mirror.

My daughter is African American with milk-chocolate skin and a fro of kinky-curly hair. Her birth mother is petite and curvy, she was a C cup by the age of eight and by the time she was twenty-one she’d already had two breast reductions. I asked what it had been like for her to develop so young. Terrifying, she said. She hated her breasts.

I’m Norwegian, fair-skinned and tall. I have straight brown hair and I am completely breastless. I worry that I am my daughter’s definition of normal. I want her to love her body and understand that what she has is perfectly right even if it is different from what I have. I do my best to find role models. I actively cultivate black friends. I’ve enlisted my mother and my sister to jump into the shower when they are visiting, casually, so they know what an un-edited woman looks like. I strive teach my daughter to appreciate our physical differences and the similarities in our character. I try to teach her to appreciate all kinds of beauty and re-define normal. Even so, just after she turned four she told me she wanted to be white so she could be “twins” with Mommy and Daddy.

Sometimes I think I’ve had enough. I know my post-cancer self now and it’s time to replace my C cups, but then I hear about the pain and the surgeries and the recovery. My youngest is two years old and pushing thirty-five pounds. He likes to be carried. Sometimes I think when he’s old enough and big enough, and I don’t need to pick him up as much, I’ll get breasts for myself. Sometimes I think I should get breasts so my kids know what they look like, so my kids won’t be confused or ashamed of me or themselves. Sometimes I think I should do it for my husband who refuses to admit that he’d like a wife with breasts. Sometimes I think reconstruction would be the best thing for all of us.
Then, as my daughter grows taller, I tighten up the waistband of her jeans; I tickle my son’s delicious toddler belly that is on the brink of disappearing into little-boyhood. I watch their little bodies change, I feed them the most healthful I can; I take them to the lake to swim and the park to ride bikes. I do my best to teach them to love and nourish themselves. And sometimes when the summer’s evening sun is strong and I get into the lake and we’re all playing in the water, when their brown skin is shining and my prosthetics are holding tight to my chest, sometimes I think I need to stop striving to be the model of normal and focus my energies on being a model of acceptance.

Posted in Breast Cancer, Parenting, Self Image, Surgery, Survivorship | Comments Off

Cancer and Guilt

 

Do you feel  guilty since having a cancer diagnosis?  Do you spend time feeling responsible that you in some way caused your cancer?

This month’s blog post comes from a young  breast cancer survivor who shares her perspective on dealing with guilt after cancer.  She has gained a healthy relationship with her guilt and instead of allowing the guilt to paralysis her has become empowered to live a healthier life!  

Check out her blog at coffeejitters.net

-Polly

Judy Schwartz Haley by Darrah Parker

Judy Schwartz Haley by Darrah Parker

I went to the doctor expecting another prescription for antibiotics, and came home with a referral to get a mammogram and ultra-sound.  As it turns out, it wasn’t mastitis at all; it was breast cancer.  My husband and I were both students at the time, and we had an infant; cancer was not on our agenda, or in the budget.

The first thing I had to do was wean my baby from breastfeeding in preparation for the mastectomy.  She lost her favorite source of comfort and food, and then immediately lost two pounds.  Cue the mother’s guilt, and the beginings of survivor guilt.  Those guilty feelings did not stop there.  My medical condition not only presented a significant financial liability to our little family, but it impacted my husband’s educational and career decisions; he passed up many opportunities and limited his own options in order to help me, and keep our family close to my doctors.

I immediately launched into a little research project of my own devising, determined to identify exactly what I did to cause my cancer.  During those long weeks between diagnosis and the first step of treatment, surgery, I wallowed in a pool of self-blame.  But I didn’t get in there alone; I had plenty of help.  Well meaning acquantances asked me what caused my cancer, interrogating me on my health and behavioral history, from exercise and eating habits, to smoking and household cleaning supplies.  Family members suggested I must have done something to deserve this diagnosis.  The internet bombarded me with articles that insisted certain behaviors and diets cause cancer, while others prevent cancer.  The onslaught of attention and dubious information came with a very clear message: cancer is simply the result of a specific behavior.

I wish cancer was that simple.

It has taken me the entire two-and-a-half years since diagnosis to understand that cancer is still an enigma, not just to the public and patients, but to the medical establishment as well.  It’s a numbers game, and we’re playing the odds.  Doctors deal in likelihoods and correlations rather than absolute cause and effect.  Considerable research continues, and the collective knowledge about cancer expands exponentially every year, but despite the licentious use of words like “cure” and “prevention” flaunted by the media, there is still no cure for cancer, and there is still no guaranteed prevention for cancer.  But I can take action to improve the odds.

I can exercise and eat better, but there again the guilt kicks up.  Quite simply, I don’t exercise as regularly as I should, and I don’t eat as well as I should.  It’s easy to beat myself up over this, and then once I’ve thoroughly chewed myself out, I take to the couch with a pint of ice cream.  A little perspective is useful.  In truth, I have changed significantly since my diagnosis.  I do exercise more, and my diet is completely unrecognizable from my pre-cancer days.  I now go through more vegetables in a week than I once did in several months.  Trying to consume as many different kinds of fruits and vegetables each week has become a kind of game for us.  I used to occasionally detour to the produce section to pick up one or two items; now the produce section is the whole point of the trip.  That is, when we don’t get the veggies from the farm.

Looking back and acknowledging how much my diet improved changed everything.  Yes, there is room for improvement, but there is always room for improvement.  I have changed, significantly and in lasting and sustainable ways.  By recognizing and focusing on my success, it was easier to build more success.  I don’t have to beat myself up in order to encourage continued improvement; that actually has the opposite effect.  I don’t have to compare my diet or behavior to anyone else; this is not a competition.  Whether or not others judge me has no bearing on whether or not the cancer returns.  Neither does guilt.  I will continue to improve my eating habits, and work on exercising.  Hopefully this will improve my odds of avoiding a cancer re-run; either way, it will make me stronger and healthier in the process.

I am still learning how to release those feelings of guilt.  It is difficult, like kicking a habit, but I understand that sustainable change is gradual.  I just keep at it, persistently improving myself.  Every once in a while I still catch myself feeling guilty about the cancer, and then I feel guilty about feeling guilty, and then I remember how far I’ve come and give myself a break.  Nobody deserves cancer; not me, and not anyone else.

Posted in Attitude, Breast Cancer, Exercise, Nutrition, Relationships | Comments Off

Now What?

7-Year Cancer Survivor – Now What?

Are you a different person now than before you had cancer? Cancer changes lives not only for survivors but also for co-survivors, family and friends.  Cancer can bring clarity to a situation that was once gray and confusing,  but can also leave loved ones wondering what happened to the person they once knew.

This month we feature a survivor who has been transformed by her cancer experience, and along the way found the courage to make tough decisions that were life altering.

-Polly

It all began on 6/14/2005 – that’s my date.

Receiving a cancer diagnosis is life changing enough, but I think the most remarkable lessons come after the fact (for those of us fortunate enough to survive).  It’s difficult to comprehend what ‘the lessons’ are while you’re still in active treatment because that’s all-consuming.   And for a few years after, the apprehension of surviving and “what now?” takes up a lot of time and energy.  But, as we gradually move on with our lives, and the distance between follow-up appointments lengthens, there are plenty of opportunities to reflect on life before and after cancer.   And, oddly – quite frankly-  I prefer my life now.

Why?

I’m MUCH more patient and tend to ‘go with the flow’.  In my life before cancer I’d make things happen; but now I believe more and more that things happen when the time is right, and if they don’t happen, I’m not going to worry.  Coming from someone who used to plan and think 1-2 years in advance, that’s quite a transformation which, for those who’ve known me the longest (ie: my family), is hard to digest.

The biggest lesson I’ve learned (which my family will never come to terms with) is I’m the one who’s changed.  My family’s attitude towards me won’t change because they only see and remember the old pre-cancer me.  I can’t change their perception because what’s happened over the last 7 years has been my own personal journey – nobody else’s.  It’s a strange adjustment to make, and I’m still coming to grips with it.

At the time of my diagnosis, I was transferring from community college to a 4-year degree program and just wanted the last two years to be over with so that I could graduate and move on with my life.  Underneath all of the chaos, though, were doubts about my marriage.  Was it based on friendship, companionship, or really life-long love, and could I see us truly growing old together?  What cancer taught me is that you have to be realistic enough to know when you’re not happy, and brave enough to change the situation if you’re not happy in it.  During six months of counseling, the word that stuck with me, and helped me leave an ‘empty’ marriage, was “bother”.  When it bothered me enough I did something about it.  Coming to the realization that I couldn’t grow old with someone who didn’t know how or when to help me during seven months of chemo, surgery and radiation, broke my heart; but has since freed me of that worry.  Life really is too short to waste time worrying about things we can’t change.  We must change the things we can, move on, and not feel guilty for finding our own happiness.

So, what now?  After two layoffs in less than two years,  I refuse to expend energy on worrying about what’s going to happen next week, let alone six months (or more) from now.  That attitude is a little laid-back when, in theory, retirement should factor in to my life in 14 or so years; but why should I, or how can I, worry that far ahead when who knows if I’ll be here then?  That’s really how I feel about life, which is pretty immature coming from a 51 year old “kid” (we all may have to age, but I refuse to grow up).

However, given what’s happened over the last seven years, I’m not investing energy in worrying too much about the future; I’m BUSY LIVING NOW and encourage you to do the same, regardless of whether or not you’ve done battle with cancer (as a patient, or co-survivor).

Plans for the future?  No idea!  I’m busy going with the flow and can’t think too far ahead.

LiveSTRONG!

Posted in advocacy, Attitude, Breast Cancer, Relationships, Survivorship | Comments Off

Dancing in the Rain

 

This Months’ post comes from a young breast cancer survivor,  Regina, who describes the challenge of living life as a cancer survivor facing her worst fears of her cancer returning while at the same time trying to put into practice the lessons she has learned from Cancer.

-Polly

Dancing in the Rain..

“Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”

Putting this into real life practice is often difficult for most of us.  As a cancer survivor, I have often felt that there is extra pressure to “have figured it out.”    You know what I mean – cancer survivors are supposed to have this down.  It’s like a two for one package deal:  get cancer and instantly appreciate life more and savor every moment, practice gratitude, don’t waste time being angry; all that stuff.

Yeah, sure, I go through periods of being more mindful and feeling more grateful; but then I seem to slip right back into those all too familiar habits.  Each time, with an added bonus of those fun little messages running around in my head.  Things like: ”but didn’t you learn anything from this cancer experience? “

Recently, I had a “scare”.  Once cancer has entered your world, every ache and pain and unusual symptom is cancer until proven otherwise.  During that time, I vacillated between being scared out of my mind that my cancer had returned, and periods of incredible peace and calm.  At times I surprised myself that I was actually able to really BE in the moment.  It got me wondering: maybe, just maybe, I had learned something after all these years.

How many times have I just floated through life?  After all –  most days, I’m just making it.  Minutes turn into hours and hours turn into days; and days just drift by and turn into years. All colliding into one another.  Life in our house is busy, I mean crazy busy.  Kids grow older, birthdays pass and life flies by.    Schedules are packed and days are spent running from one thing to the next.   Soccer practice, games, band recitals, laundry, grocery shopping and sitting in traffic.  It’s easy to get caught up and lost in the blur that can consume us.

Until a “wake up call” comes a calling.

During this most recent “call”, I thought about a lot of things.

I spent time thinking about my friends who had died too young.  How had their families moved on?

I thought about what was really important to me.

My family.  The amazing connections with friends that I have.  Being heard, really understood.  The feeling of unconditional love.  The warm sun on my face, and of course my favorite foods.   I thought about what a gift cancer has been for me these years (strange as it may sound).

I wondered a lot about how my kids would do without me.  Who would  help them with their homework and send in their camp registrations?   I wondered who my husband would remarry and how she would learn to love and accept my children.  I wondered how my kids would cope?   Would they be resilient enough to move on at some point?   I wondered about a lot of things if I died.

At the same time, I spent a lot of time feeling very grateful for everyone and everything that I had experienced in my life.   I thought about the fact that many people never get to experience what I have had.    So many people just float, and life just passes them by.   The day to day becomes just that, and even the exciting becomes just another birthday or celebration of some kind.  Then one day, they wake up and find that they somehow got old.

This time, I made no promises.  This time, I just felt grateful when the tests came back “NO CANCER.”

I am grateful for the lessons of cancer.  To have the opportunity to be able to learn something at a relatively young age that some people don’t get the opportunity to ever learn.  I do miss the innocence of not fully appreciating my mortality – that is gone forever.

Tomorrow is another day and another chance to try to live life intentionally, to be more mindful, more grateful and to not forget about what’s important.   Tonight, I kiss my husband and kids goodnight and tell them I love them.  All the while thinking: how lucky and how blessed I am to be here with them, at least until I drift into the next episode of amnesia.

Posted in advocacy, Attitude, Lifestyle | Comments Off

Who are Your Angels?

Our guest blogger this month is an ovarian cancer survivor who was an incredible human being prior to cancer, and yet has used the opportunities through cancer to continue to grow in so many wonderful ways.

I believe it is how she chooses to see the world around her and how she chooses to interpret the events around her that have and will continue to make the biggest impact on her post-cancer life. Feeling empowered to be the writer of her story is critical.

Do you feel empowered to be the writer of your story? If not, how can you start to feel more empowered?

-Polly

When my angelic friend Polly asked me to write about my survivorship from advanced stage ovarian cancer, I was very excited because I had so many stories that I wanted to write.   But when I sat down to write, I realized it was not easy.  There are so many stories around my survivorship  -  I only want to share the one that impacted my survivorship the most!  This is the story that turned a disease around for me into a gift: the gift of life! The Gift of seeing, smelling, wanting,  loving, forgiving, healing! The gift of connecting, losing, finding and much more.

I was on the top of my world when I was diagnosed with cancer. I was IN LOVE with my soulmate.  My son, whom I had raised single handedly as a new immigrant from a far land in war, had just become a beautiful young lawyer.  I was starting to have more financial freedom in my life, after 52 years of good and struggles!  I was physically fit (did I say “the top of my world!?”)

The cancer news came on Wednesday March 2nd.   After I found out, I had to share it with my friends and family.  My family lives scattered around a few states in the US, and countries around the globe. I had to gather myself to tell my only son, who lives in Florida; the one who had told me many  times, “mom you are my rock, my earth, the only person on the planet that I do truly count on” – and I am all he has in this universe.  I also had to tell my brother; he is only two years older than me and had already survived supposedly terminal cancer twice.  He has been in remission for the last 6 years !!  Finally, I had to tell my soul mate. We just finished planning for a life together on a beach house, somewhere simple and warm.

On march 3, I received two very important email replies, the first from my survivor brother who is a scientist himself.  He never says much, and you can count on what he says.   The 2 line email said: “I had to sit down when I got your email – I am shocked!  My only suggestions to you are: don’t under estimate the power of your mind, AND no matter what they say, don’t lose your cool! “.  His very simple suggestions helped me find a peace, a cool, a calm that I still haven’t lost .

The second email which came at exactly the same time as my brother’s e-mail – as if angels are at work harmonizing everything – from another survivor friend only 6 months a head of me.  It said: “avoid the Internet at all cost“.  God, she was so right.  The day I got the news about my cancer, I opened my laptop and googled  ”ovarian cancer”; the first thing I saw in large bolded print was “ovarian cancer is fatal.”  I immediately shut the laptop and said to myself “no its not!”  I sat there and thought to myself “It can’t be.  No  - I am in love!  I am happy!  I am all my son has.   NO this is not my story – my story is not ending now !”

Even though I ended-up losing the love of my life after surgery, I didn’t lose the spirit and the inspiration of his love.  The heartbreak did not compromise my faith or my belief that I am in charge of writing my own story!  With that mentality, I was able to manage and accept my cancer, and I was an exceptional patient in the face of 5 months of very hard of chemo every week.  After the Chemo, I became a success story!   There were many moments that I was taken over by my ANTs (All  Negative Thoughts) – however, the love of in my heart and positive thoughts in my head always prevailed!

I still don’t read anything about ovarian cancer unless is sent to me by a trusted source.  And still I only read about the cure, not the disease.  The best part of the story is that throughout the entire process, angels kept showing up everywhere, from my surgeon, Naturopath, and Acupuncturist, to my friends and family – angels were everywhere, acting in harmony to support me and help me write my own story.

I have never felt this vibrant and alive and connected and happy and healthy in my entire life as I do today.  I have never lived life so fully and with so much  intention and light heartedness!

I am putting as much stamina and commitment into enjoying life as I did when I was reclaiming my life! As they say,  I am learning to live my best life every day!

Believing in angels, having the burning desire to be the writer of my own story – not having cancer write it for me – and keeping the zest to love life changed the course of the disease for me!

This is my story and I am sticking to it :)

Posted in advocacy, Attitude, Chemotherapy, Ovarian Cancer, Survivorship | 1 Comment

Parenting with Courage in the Face of Cancer

Below is the second of several guest posts to Survivorship Partners’ blog.

We all know that life is full of uncertainty; but when one is facing a potentially terminal cancer diagnosis, uncertainty takes on a whole new dimension. Cancer can teach us important lessons: learning to embrace life fully, while living with an uncertain future, is one of the most difficult but valuable of these lessons.

Parenting as a cancer survivor is undeniably one of the most challenging aspects of living life with uncertainty. This month’s guest blog post is written by Marolan, a young woman who has capably and admirably raised her daughter while living life in the face of stage IV cancer. She has embraced it with unending and incredible courage and determination.

- Polly

Spring showers, sunshine breaks and snow have been the norm the last couple weeks in the Pacific Northwest. Typically we don’t see snow this late in the season, just drizzly showers intermittent with bursts of sunshine that beckon the winter-weary out of doors.  This year I’ve been holed up inside, watching gale-force winds rip through the swaying, enormous Evergreen trees in the neighbors’ yards, hoping they don’t fall on my house.

Today as I drive to pick up my daughter from school the skies change from sunshine to snow to rain to sunshine all in the course of 15 minutes.  Hannah is wet from head to toe just from running from the school to the car.  She simultaneously dumps her backpack in the backseat and plants a kiss on my cheek.

If I were to compare the teen girl Hannah is now to the girl I hoped she’d be when she still had that new-baby smell, it’s surprising how closely the two align. Until recently, I was certain I’d failed her in life’s most important ways.

I believe most people begin parenting with not only the best intentions of what kind of parent they will be, but also knowing what kind of parent they won’t be.  My brother and I were raised in Texas  by an extremely hardworking mother, and by our scientist dad who is a happily self-professed workaholic.  I think every child has things in life they want to do differently with their own children.  I had my list for Hannah: no one else would raise her, so she would never be in day care; she would spend her childhood just being a kid who felt loved and protected; and, lastly, she could form her own spiritual beliefs.

When Hannah was four months old, we began the process of moving from our tiny 910 square-foot, first-time-buyer’s home, to a bigger, more family-friendly one.  My husband – a gentle, “suffering musician” type –  and I met when I was just 18 years old.  At 31, with the new baby, a new home, and a healthy marriage I was the happiest I’d ever been.

Shortly after we signed the loan documents, my husband began the slide into a soul-crushing depression.  Nearly three years later I was diagnosed with cervical cancer and I found that our combined illnesses exceeded my capacity to take care of my marriage, Hannah and myself.   I got a radical hysterectomy, and sadly, a divorce.

I’d never lived on my own before marriage, and suddenly I was a single mom who desperately needed benefits and an income to support us both.  The transcription business I owned had been ‘feast or famine,’ but there was not enough feast to get through the famine months.   I got a good job at a large technology company, and placed 3-year-old Hannah into a Montessori School full time (also known as day care).  I felt like I’d failed her.  Eventually I was able to drive to work dry-eyed, but I never did shake off the feeling of failure.

The next four years were a battle between the strict demands of my company, and my own for being a great mother.  Every moment I was not working we were at the zoo, on nature hunts, and learning about life.  We made a happy pair.

When Hannah turned five I met Alex.  He was a gentle, computer-savvy gentleman, with a sexy English accent. Hannah was with her dad, so I agreed to a first date on Christmas day.  Alex asked me to meet him at a local Italian-themed restaurant (oddly owned by a Ukrainian family).  When I walked in the bar,  it was at full capacity with over 40 Ukrainians singing and dancing, and this wonderful Englishman was staring captivatingly at me.  My friends say this guy must have been something special when I introduced him to Hannah a week later – I never introduced her to anyone!  One year later we decide to make our little family official.  Life was perfect.

Following our honeymoon I was anxious to get back to work to hit deadlines.  The back pain I’d been plagued with for the past three months was so unbearable I couldn’t find a comfortable position.  I gave up in frustration and went home to work on the floor.  After two weeks with no improvement, I went to see my GP, who ordered an MRI and called me the following day.  I had Stage IV cervical cancer.  A tumor the size of a grapefruit was squeezing my sciatic nerve like a balloon animal. It was inoperable.  It had been 4 ½ years since my surgery, and I was supposed to be celebrating 5 years of being cancer free in just six months.  How could this be?

The doctors said I was young and strong, so they were going to hit me with everything they’d got in their arsenal.  I began chemotherapy and radiation, and alarmingly, a Hospice nurse began visiting me on alternate Wednesdays.  I reluctantly turned Hannah’s care over to my mom and Alex, to friends and caring neighbors. Hannah was told, “Not now, honey, Mommy isn’t well,” and, “Quiet down, sweetheart, your mother is sleeping.” They did their best, but she felt pushed aside.

This was not the care-free childhood I’d envisioned for Hannah.  That feeling of failure was nagging at me again, and I was too sick to do anything about it.  I spent all my time trying to eat and drink only to throw it up again, out of my mind in pain.  I needed some control in my life, so I asked the Hospice nurse if she could stop coming because she made me nervous.

Five months into therapy I experienced complications and had what was called a “near-death experience.”  Somehow, that brush helped me turn a corner. I had to move my body so I could be here for my girl.  I decided to start walking.  At first, I couldn’t make it down our short drive. Hannah happily joined me for my “shuffles” (they weren’t fast enough to be called a walk), and escorted  me back to bed.  Then we’d have another go an hour later. Within six months I could walk around the block four times!

Our walks turned into a special time between us to talk about life, laugh and act silly. Late summer we always stopped at the same blooming honeysuckle, taking turns picking the bright yellow flowers and placing them on our tongues for that brief taste of sweetness.  One fall day we passed the honeysuckle out of season, its brown vines covered with crunchy dried leaves, when she confides, “Mommy, I don’t believe there is a God.”

I was speechless.   I know she’s been praying for me.  She’d been given a prayer jar with little pieces of pastel paper to write on, and a tiny pencil that fits inside. She’s scribbled, “Please help my mommy not be sick anymore,” and “please cure cancer,” before tucking them safely back inside the little glass jar and screwing on its silver lid.

I tried to imagine how she must have felt.  She’s only 7 years old, and her mother was a walking skeleton, bald, and frail.  Of course she felt like her prayers hadn’t been answered!

I was raised in a scientific home.  Bringing up a spiritual matter was often tantamount to picking a fight. Yet I always believed in something greater than what I could see.  Time and time again I find life’s most important lessons spring from times of misfortune. I often shared these insights with Hannah, always pointing out life’s complexity, its beauty.

It never occurred to me that she would conclude that there was no God at all.  I told her to be patient; but I felt like I’d failed her again. Should I have provided her with a more formal religious foundation?  In my desire for her to have the freedom to explore her spirituality, perhaps I was too vague. My own beliefs had deepened during my fight with cancer.  I decide to trust that Hannah had her own path. I would continue to teach her what I believed, but left it to her to decide what spoke to her own soul.

Hannah remained patient, and kept a hopeful cheeriness that brightened everyone’s day. After a year of treatment, my body finally went into remission.  We were all overjoyed! Alex and I began the journey back from caregiver and patient to husband and wife, I became a fulltime mother, and Hannah was grateful to have normalcy in her life once again. Soon I was strong enough to go to dinner, on family vacations, and truly enjoy life.

Time flied, as it tends to do when life is going well.  It was little more than a year later when the cancer came back inside the sacrum, weaving a snaky path through the gluteus and periformus muscles.  My doctor told me I’m terminal.  I found another doctor.

When Hannah learned of the recurrence, she was truly devastated.  At the tender age of 8, she still envisioned us living together when she grows up (she will use her money as a lawyer, airline pilot, and cab driver to pay for a big house; she will live on one side, and Alex and I on the other).  Just then, in this precious space in time, I was her world.  But Hannah was older and understood just how bad cancer could get.  I told her I would fight the cancer monster again and that I would beat it. Even as the words left my lips, stated as fact, I wondered if I could indeed beat it.  Who survives cancer three times, and lives to tell the tale?

Around four months into chemo I was hospitalized for an electrolyte imbalance. They ran a PET/CT scan to see how my therapy was progressing.  The following day an old friend stopped by to visit.  We were laughing, reminiscing about the crazy days we worked together, when my doctor tapped lightly on the door-frame, and asked if he could speak to me in private.  He closed the door, and turned back to me with wet eyes and said, “The cancer is gone.  We don’t know where it went.”  He was baffled.  The cancer had simply disappeared.

Recently Hannah and I were oohing and ahing over the start of the blooming cycle for azaleas. The first ones are always purple, then red, yellow, blue, white, and more, bursting in bloom like fireworks, one after another.  I watch my growing girl run ahead to do a cartwheel on the neighbor’s lawn.   I smile and wonder at the miracles we call children, and their ability to overcome obstacles life throws in their way.

I remain in awe at all Hannah has been through in her short life.  She’s been watching me fight cancer for the last decade, yet she hasn’t lost her sense of humor or that silliness that I love so much. Being in daycare didn’t change the fact that she has a kind and honest heart.  Having those diverse set of caregivers taught her life lessons I never could have, and have made her a better-rounded person.

She runs back to me, and as we walk past the dry honeysuckle branch her hand slides comfortably into mine. It’s still months before it blooms yellow and sweet, the fragrant flowers tumbling up and over the fence onto the ground.  Hannah squeezes my hand and says, “Mom, I’ve decided the universe is just too perfect not to have something behind it.  I do believe in something greater, I just don’t know what that is yet.”  I put my arm around her shoulders, give her big squeeze, and tell her she is great.

She is finding her path! It turns out that I didn’t fail her in the least.

Posted in Cervical Cancer, Chemotherapy, Parenting | 3 Comments

Toom-ah? What Stinkin’ Toom-ah!

Below is the first of several guest posts to Survivorship Partners’ blog.

Jessica is a walking definition of advocacy and really illustrates how vital being proactive is in survivorship.  What can we learn from her in advocating for yourself or your loved one?

- Polly

What does it mean to advocate for yourself?

It means survival.  Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer.  I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science.

According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate.  Sound like fun?  No.  Nope, the outlook is horrible.  Is that acceptable?  No!

If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options.  You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already.

At first, I believed my doctor’s words and thought that there was nothing I could do.  My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want.  They said I should live my life however it makes me happy.  It sounded nice.  I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines.  Yum! But, something didn’t sit right.  It just didn’t make sense that my food choices didn’t matter.  I mean, wait a minute, I had heard that you are what you eat?  If food is fueling my body then it doesn’t make sense to load up on junk.

I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it.  Then, here and there, I kept hearing stories of survivors of brain cancer.  There are only few, but I realized that those few have valuable keys to survival.  That became my new goal, copying survivors.

There is so much that you can do, including supplements, diet, exercise, meditation, clinical trials, etc.  When I came out of my brain surgeries (there were two consecutive) my doctors told my family and me that I have a 1% chance of surviving this cancer.  Scary!  At least it sounded scary, but once I started researching alternative treatments I realized that I can increase my survival by several or tens of percentages.

You can not be afraid to do hard work.  You can not give up (except for once in awhile when you really need some ice cream).  Each cancer is different.  Become an expert on your diagnosis, on the treatments, on the survivors, on the diet, on the mechanisms of cancer cell division, of how the cancer feeds itself, and what the cancer cells are comprised of.  I know it’s a lot and it takes an incredible amount of energy, but that’s what friends and family are for.  Don’t be afraid to delegate.  People want to help you, they want to see you survive.  Everyone loves the underdog!  Yes, you are going to be exhausted, and sometimes you won’t want to go on, but you have to.  You need to.  You must.  You can do it!

You must be your own advocate.  If a treatment doesn’t feel right, or if the risks outweigh the benefits, you don’t have to do it.  For example, my radiation oncologist has been trying to force me into doing radiation, even though he admits that it will not extend my life and that there are very serious short and long term effects.  You are a customer in the medical system.  Your surgeon, your oncologist, your radiation oncologist, each nurse, they all work for you.  I’m not recommending that you give off an attitude because that’s just unnecessary and rude. But keep that in mind while you are in appointments.  You deserve to be treated with kindness and respect.  This is your body, your life, and your survival.

If you want to survive, and I believe that we all have the ability to do so, advocate for yourself.  It’s the biggest challenge you will ever face.  Contrary to common belief, you’re not fighting the medical world, you’re fighting yourself.  Once you stop fighting against your sadness, or disappointment of your illness, you can dust yourself off and decide that you are your best treatment.

Posted in advocacy, Brain Cancer, Nutrition, Radiation, Research, Surgery | Comments Off

A New Way of Living for 2012

A cancer survivor friend of mine said something the other day that really stuck with me.

She said: “It’s time to put as much work and stamina into enjoying life now as I did defending it!”

Some might say that while making it through treatment is no small feat, once treatment is over, survivors often feel lost and abandoned.  It’s counter-intuitive to what most of us expect.  We can’t wait to finish treatment and while there is a huge sense of relief when treatment is over, often post treatment can bring increasing worry about recurrence.  While in treatment, we have a task at hand and are actively engaged in defeating their cancer.  After treatment is over, it often becomes a “watch and wait” scenario.

The late Dr. David Servan-Schreiber describes a post treatment discussion with his physician in his book, ”Anti-Cancer”.  Once his treatment was over, Dr. Servan-Schreiber asked his oncologist:  ”What should I do to lead a healthy life and what precautions could I take to avoid a relapse?”

“There is nothing special to do.  Lead your life normally and we’ll do a MRI scan at regular intervals to see if your tumor comes back and we’ll detect it early” was his physician’s answer.  Not an uncommon response but one that can often leave survivors feeling helpless.

In fact, there is so much that survivors can do.   They can become active participants in their health and be empowered to make a difference in their own survival by the choices they make every day. The key is to avoid a feeling of helplessness.

The best way to overcome the fear is to get busy living!  Combat the anxiety with choices that will positively impact your health while at the same time improve your quality of life.  The issue is not about motivation, but about understanding the impact of these choices on one’s body, mind and spirit.  Survivors give 150% effort to their treatment.  Why not give that much effort to living life and thriving after treatment is over?

So no matter the length of your survivorship, it’s never too late to get started.  Instead of having absolutes to follow, I offer a few guiding principles to consider for 2012 that might add years to your life and life to your years!

1.  Food as Medicine.

“Let Food be thy Medicine, and Medicine be thy Food”        Hippocrates

Instead of believing that food’s main purpose is as an energy source, consider that food really is the most important medicine that nourishes each cell in your body.  Providing more than energy, healthy foods create the right “terrain” for good cells to flourish and bad cells to die.  I subscribe to the 80/20 rule knowing that no one is perfect all of the time.  Try it guilt free.

2. Practice Gratitude

“Be happy for this moment. This moment is your life.”   Omar Khayyam

One thing, I have learned from cancer is that life doesn’t come with any guarantees and is full of uncertainty.  Practicing gratitude takes practice!  It can really rock your world once you start to see things in a more positive light.  If you are struggling to be grateful, keep it simple.  Think of very basic things to consider; gradually you will build on the basics and it will become easier.

3. Live consciously in the present  moment.

“The key to life is not the number of breaths you take, but the number of the moments that take your breath away.”   Anonymous

Life goes by fast, and it seems to go faster and faster the older I get.  There is no time like the present to get connected to your spirit.   Download a meditation app or try a class.

4. Move your body.  Exercise is vital to cancer survivors, can reduce recurrence, and improve survival rates.  The benefits of exercise for cancer survivors are amazing.  Imagine decreased fatigue, pain  and stress.  Exercise improves sleep, mood and cognition; not to mention reducing  the risks of heart disease, diabetes and other chronic health issues.

5.  Sleep improves just about everything.  Getting  8 hours of sleep each night can help keep cortisol  (stress) levels balanced, which is good for your body, your immune system and your brain.  Enough sleep on a regular basis can really improve your coping abilities.  Sleep recharges your brain and gives you the energy to do what you want to do.

6.  Reduce the chemicals and toxins in your life.   What’s good for your body is good for the environment.  Start with buying organic produce,  or meat and dairy when and if possible.  It’s easy to get overwhelmed  and – the key to success is to take it slowly.

7.  Feel the love in your life.  There is nothing like a cancer diagnosis to learn who your “peeps” are that love you.  Don’t forget to show them that you care, even after your treatment is over.  Post treatment can be when many survivors need the emotional support more than the physical support.  Let them know that even though things may be improving physically, things may be tough emotionally.  Give yourself permission to ask for what you need in your life.

Dr. Servan-Schreiber believed that the very things that can lengthen your life can also help you to feel good and enjoy life.  Fear is hardly a good motivator; instead, feeling well in body, mind and spirit are the best ways to stay motivated for the long run.  So now is the time to become an active partner in your health.  Take back control…..It’s a new way of living!

Posted in Environment, Exercise, Lifestyle, Survivorship | 1 Comment

Rachel was Ahead of Her Time

I think Rachel Carson would have been pleased with the most recent report and recommendations from the Institute of Medicine (IOM)  that was released last week.   This report reviewed the evidence on the environmental causes of breast cancer.   It emphasized that we must pay attention to certain environmental exposures which may be contributing to the causes breast cancer.  According to the Silent Spring Institute, “in the context of U.S. breast cancer institutions focused on mammography and treatment, the recommendation for chemicals testing is a significant positive step for prevention.”

Who was Rachel?

Rachel Carsonwas a courageous scientist who helped to spark the modern environmental

movement when she published  “The Silent Spring” in 1962.   By bringing attention to birds that had become silent due to indiscriminate pesticide exposure, her report sounded alarms. Unfortunately, Rachel died of metastatic breast cancer just two years after testifying before Congress.

Since that time, there has been an explosion of chemicals introduced to most Americans with very little oversight and testing.  According to the CDC, most Americans have over 200 different chemicals in their urine or blood.   We have very few studies to evaluate the long-term effects from these chemicals.

This most recent IOM report concluded that women have many opportunities to reduce their risk of contracting cancer from environmental factors.  It identified some known risk factors for breast cancer such as estrogen-progestin hormone therapy, smoking, alcohol and radiation.  It also emphasized that increasing physical activity and reducing excessive weight gain after menopause can reduce breast cancer risk.

With regard to evaluating the effects of chemical exposure in our environment, the IOM acknowledged that evidence from human studies is often not attainable.  However,  we can’t wait for evidence that may be a long time in coming – or that we may never have – to take action.  This is where we need to employ common sense.

The “Precautionary Principle” advocates for common sense. This principle states that evidence of harm (rather than definitive proof of harm) should prompt policy action. We can’t wait until we have conclusive evidence in human studies that we may never have.  We can begin to enact changes about the choices we make every day in our work places, our homes and in our everyday lives that could have a profound effect on our health.   Ask yourself- what’s the harm?

Beyond the IOM’s Report- Reducing Environmental Exposure

Beyond the IOM’s recommendations, The Silent Spring also offers this one page guide to approach environmental exposures.  It could be very easy to drive yourself crazy trying to avoid every potential carcinogen.  My best advice is to stick to a few guiding principles and keep it simple.

Here are 4 areas to consider when thinking about reducing your exposure to environmental toxins:

Dry Cleaning.  There are many chemicals used in dry cleaning, but the most famous one that has been around the longest is PERC.  According to the EPA, laboratory studies show that PERC causes kidney and liver damage, as well as cancer in animals exposed repeatedly by inhalation.  Repeated exposure to large amounts of PERC in the air may likewise cause cancer in humans.

A good option is to limit the amount of clothing that you have that requires dry cleaning.
Wet wash as many of your clothes a s possible and buy clothing that doesn’t have to be dry cleaned.  If you do have to dry clean, try to use a toxic free dry cleaner such as Blue Sky.

If you do use a traditional dry cleaner, try unwrapping your dry cleaned clothes when you get home and airing them out.  If you take the plastic bag off inside your house, the PERC just goes into the air where it can last up to a week.  So, it’s better to air out dry cleaning in an open garage or outside.

BPA is synthetic estrogen and is in many plastics containers like water bottles and baby bottles.    Purchasing BPA-free water bottles and using glass containers for food storage are simple changes that doesn’t cost a lot, but can reduce BPA exposure.  Other suggestions to reduce BPA exposure include:

  • Don’t microwave polycarbonate plastic food containers.   Polycarbonate is strong and durable, but over time it may break down from overuse at high temperatures.
  • Plastic containers have recycle codes on the bottom. Some, but not all, plastics that are marked with recycle codes 3 or 7 may be made with BPA.  Avoid recyclables with these codes.
  • Reduce your use of canned foods – most cans are lined with BPA
  • Where possible, opt for glass, porcelain or stainless steel containers, particularly for hot food or liquids.

Cosmetics and personal care products.  As a general rule, choose cosmetics without phthalates and parabens that can mimic estrogen and are classified as endocrine disruptors.  This is a difficult task for often these chemicals are not labeled.  Consult the Environmental Working Group (EWG) website to get more information about products.

Foods.   Buying organic products is typically more expensive than conventional products; but there are some guiding principles that can help to make your choices easier

Dairy and meat concentrate harmful compounds – so buying organic, hormone free is critical.

Studies have proven that  80% of pesticide residue can be eliminated by choosing organic produce.  To minimize your exposure, consider consuming this list of organic produce:

  • Vegetables:  Bell peppers, spinach, celery, potatoes, lettuce, spinach, green beans and winter squash.
  • Fruits: Apples, cherries, grapes, nectarine, peaches, pears, raspberries and strawberries.

EWG provides a list of the dirty dozen and the clean 15.

Ahead of Her Time

Rachel Carson was clearly a woman ahead of her time.  Ninety percent of breast cancers do not have a genetic component , which makes a compelling argument to continue looking for environmental contributors.  While it’s easy to get frustrated with the speed of progress around breast cancer prevention, this IOM report is a step in the right direction.  There is still much work to be done, but I think if Rachel were here today, she would be pleased with the direction we are headed.

What environmental toxins are you removing from your life?  I want to hear from you.

Resources/websites

http://www.iom.edu/Reports/2011/Breast-Cancer-and-the-Environment-A-Life-Course-Approach.aspx

http://householdproducts.nlm.nih.gov/index.htm

http://www.silentspring.org/breast-cancer-and-environment

http://www.avoidcancernow.com/

http://www.ewg.org/skindeep/

http://greenliving.nationalgeographic.com/improve-indoor-air-quality-2811.html?source=glhottopic

Posted in Breast Cancer, Environment, Estrogen, Exercise, Research | 2 Comments

Don’t Worry – Be Happy!

Does Stress feed cancer?    Can we affect our ability to fight cancer by how we manage stress?Businesswoman Doing Yoga by Ambro

We can’t avoid stress; its a natural part of life.  But can’t some stress be good?   The right amounts of it can motivate us to be competitive and innovative.    Stress can affect us both emotionally and physically.  But too much stress can also affect our immune systems and ultimately our health in negative ways.  It can put us at risk for heart disease and cancer, and make us more susceptible to illness.  We all know that stress may have a negative impact on our health.  But you also know you’re never going to be completely rid of stress. It’s unrealistic to do away with all of life’s pressures – but the key is in how you handle them on a daily basis.

We have long understood that our mind and body are interconnected.  We know that our emotions and stress levels can affect our physical health.  The science behind what we’ve innately understood is beginning to catch up.

Studies About Stress and Cancer

A study published last year in The Journal of Clinical Investigation demonstrates how stress hormones such as adrenaline can directly support the spread and growth of malignant tumors.

This research team studied a mouse cancer model (yes – that’s correct).  After receiving a transplant of ovarian cancer cells, the mice were restrained in order to cause a physically induced stress.  The researchers then noticed that their tumors grew more rapidly so they gave the mice the drug propranolol, which blocked adrenaline, and in turn, slowed the growth of the tumors.

In another article published in the International Journal of Cancer this year, higher levels of norepinephrine and adrenaline were linked to increased rates of breast cancer spreading and growth.

Breast tissue contains a very dense supply of sympathetic nerves and is heavily exposed to adrenaline during times of stress.  It was first discovered by Canadian scientists that breast cancer cells do express receptors for norepinephrine which is released when one is stressed.  When these scientists carried out a series of laboratory experiments, they found that norepinephrine significantly increased the growth of breast cancer cells and increased their ability to spread to other parts of the body.

Reducing Stress Improves Health

We can’t control our genetics.  Nor will stress ever go away entirely.  But we can change how we respond to stress, since its not necessarily the stress itself, as much as the way people handle stress that may be linked to disease.

This was demonstrated in a seminal groundbreaking study by Dr. Speigel, a psychiatrist from Stanford who studied women with metastatic breast cancer.  He was determined to prove that there was not a relationship between length of survival after a metastatic breast cancer diagnosis and the emotional trauma or stress.  To his surprise, he found that the women who participated in the support group lived on average twice as long as the women who didn’t participate.   The more regularly a women attended the group, the longer she lived.  These women who had learned to confront their fears, express their inner feelings and experience relationships more authentically, were less likely to have depression, anxiety and even physical pain.

We are now beginning to understand that strong relationships, support and managing our stress have a real positive impact on our entire being.  We cannot separate out our biology from our emotion and spiritual self.  We are comprised of all of these facets, and each affect the other.  If we make a change in one area, we are affecting the whole self.

So science is beginning to catch up with what we have innately understood for a time.  The bigger question is how do we manage our stress and optimize our ability to optimize our bodies ability to resist disease?

Awareness is the first step to improving stress levels.  Tune in to your stress levels and notice patterns.  Some stress is ok; but if you are chronically stressed out, make some changes.  Even a little change can make a big difference.

Incorporate mindfulness into your everyday life.  Meditation does not have to take but a few minutes.   Find a class, download an app or discover yoga.  Meditate in the grocery line or at the red light.  Develop your spiritual muscle.  Live in the present moment.  Get connected with your community and reach out to others.  Find a hobby.  Exercise regularly and get enough sleep.   Pick one thing to focus on at a time.  It’s easy to get overwhelmed.  Don’t forget to laugh!

Cancer can be very stressful but the opportunities for positive growth and transformation through a cancer experience are abundant if we choose to look for them.  Don’t let being stressed stress you out even more.   Be empowered to make choices that improve your stress level and help your body to resist cancer and other illnesses.   Don’t let the cancer take control.  Who knows – you might even be happier and live a less stressful and more meaningful life – in spite of cancer.

Posted in Breast Cancer, Immune System, Lifestyle | Tagged | Leave a comment