MY LIFE AS A MISFIT TOY

     The landscape of cancer is changing and requires a new approach to treatment that incorporates more resources to help survivors.  Decades ago, those diagnosed with cancer were usually advised to get their affairs in order in preparation for their looming and often untimely death.  Today, advances in chemotherapy, radiation, surgery, and early detection have allowed an increasing number of cancer fighters to live longer.  Over the past 35 years, the five-year survival rate of all cancers increased 16%.  In particular, survival of breast cancer increased 91%, survival of leukemia increased almost 29%, and survival of non-Hodgkin's lymphoma increased 26%.  As of January 2016, the number of cancer survivors in the U.S. totaled 15.5 million and, in 2026, is expected to increase another 32% to 20.5 million.¹     

     These statistics are encouraging.  However, surviving cancer poses other challenges to patients' physical and emotional health.  For example, chemotherapy and radiation kill cancer cells but also weaken the heart, making survivors more susceptible to heart abnormalities and heart attacks.  They also increase the likelihood of developing other ailments such as high cholesterol, diabetes, sexual dysfunction, kidney trouble, impaired mobility, and short-term memory loss.  Also, aggressive methods used to treat childhood cancers have caused nearly 10% of its survivors to develop another cancer within 30 years.

     Furthermore, most cancer survivors face psychological challenges such as depression and anxiety, making ordinary tasks like holding a job or maintaining close relationships difficult.  Thirty percent of breast cancer survivors who worked when they began treatment were unemployed four years later.  Adult survivors of childhood cancer are twice as likely to commit suicide.  And cancer survivors live in constant fear of a recurrence which makes it nearly impossible to set long- and even short-term goals.  Despite these facts, few initiatives exist to help survivors move past their traumas and regain control of their lives.

     The U.S. has formal "re-entry" programs for veterans, the disabled, prisoners, immigrants, the unemployed, victims of abusive relationships, addicts, and others struggling with setbacks, but lacks a universal program that addresses the multitude of challenges cancer survivors face.  As a survivor myself, a specific recovery plan would have been invaluable as I suffered logistical, physical and emotional setbacks for nearly a decade after battling breast cancer for nearly two years.

     My introduction to the world of cancer began in 2001 when I was 31 years old.  For about six weeks my right nipple was bloody and secreting a whitish liquid.  Chalking it up to irritation, every day I would smear Neosporin on it, cover it with a Band-Aid, and go about my day.  I didn't see my doctor because I was extremely busy and doubted there would be anything she could do for it.  I assumed it would heal on its own.  Months later, I needed a check-up for a persistent cough and, since my chest was already exposed, asked the physician to look at my other chronic problem.  She referred me to a dermatologist who incorrectly diagnosed my condition as eczema.  He prescribed me a cream and assured me it would get better in two weeks.  It didn't.  He then prescribed another cream, which didn't work either.  Then another, which was equally ineffective.  After two months of unsuccessful treatment with topical ointments, he biopsied it.

     When the pathology report came back, it read "Paget's Disease," a rare form of breast cancer which manifests itself on the epidermis of the breast and usually indicates that one or more tumors are growing within it.  Paget's Disease accounts for only 1% - 4% of all breast cancers and is typically found in women in their late 50s.  Discovering it in someone my age was an anomaly.  After hearing this news, my head started spinning with questions and disbelief.
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     Living in Boston, I was fortunate to be only 10 minutes from Dana-Farber Cancer Institute where I sought more information.  After re-examining the tissue sample and confirming the diagnosis, they referred me to their doctor who specialized in Paget's Disease.  At my appointment the following day, she did a physical exam of my breasts, then ordered other scans, mammograms and an MRI, all of which confirmed I had two large tumors growing in my right breast.  Over the following week, she surgically removed tissue from the tumors, then the lymph nodes under that arm for evaluation.  The results showed my cancer originated in the milk duct, broke beyond the duct wall to spawn the growing tumors, and spread to most of my adjacent lymph nodes.  My cancer was invasive, Stage III out of IV, and approaching metastasis to my other organs.  In addition to Paget's Disease, my cancer was her2/neu+++, a type of breast cancer caused by an over-manifestation of a protein that promotes the growth of cancer cells.   Her2/neu cancer represents only 20% of all breast cancers and is the most aggressive type, especially in younger women.

​     As a successful business person who followed every nutritional and physical recommendation for a woman my age, I was shocked to learn I had cancer that infiltrated my body so extensively my days were numbered.  It was unfair.  I was young.  And I made every effort to be a kind and compassionate person, which I thought was supposed to absolve you from major tragedies.  I suddenly questioned the existence of God and wondered why I, of all people, would be chosen to endure this challenge.
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     While pondering this circumstance on many levels, my doctors recommended I immediately begin a relatively new, nearly two-year clinical study for her2/neu cancer that had not completely metastasized.  The clock was ticking, so I took a leave of absence from my job and agreed to what the doctors thought was the most promising plan.  This course of action resulted in five surgeries, nearly 100 six-hour chemotherapy infusions, regular heart scans, and seven weeks of daily radiation.  After being dissected many times and saturated with chemicals and radiation, I completed my treatment at the end of 2002 and was released back to the "normal" cancer-free world.  However, I was not advised on how to handle the profound ordeal I endured and was now lost in a place I once knew well.   

     Although bald, weak, and bearing large scars that advertised stolen parts of my body, mostly my breast, I was relieved to be alive.  I no longer had to endure more surgeries which required bulky drainage tubes to hang from my incisions; or be impaled with hundreds of needles to remove tissue or blood, or administer chemotherapy or radioactive dye; or ingest half-a-dozen medicines every day to counteract the side effects of treatment; or give myself daily shots to help regenerate healthy cells that chemotherapy destroyed; or endure radiation therapy, which adds to your fatigue and burns your skin.  I looked forward to my hair growing back, which took three years, but wigs, hair pieces, hats, scarves, and false eyelashes helped during the transition.  I thought I paid my dues in spades and surviving cancer meant I tackled my major hurdle in life, earning me a hall pass for the rest of my days.  However, I found life after cancer to be, in many ways, more difficult than battling cancer itself.

     Six months after being discharged I discovered I was pregnant.  I also realized my husband's drinking had escalated to alcoholism.  Despite sending him to excellent doctors and a renowned rehab facility over 1,000 miles away for a month, his problem continued throughout my pregnancy and after I gave birth to our daughter, which occurred almost two months early.  When we were finally able to bring her home, my husband continued to drink heavily 24 hours a day.  My life with a drunk husband and a premature infant became untenable and dangerous, forcing me to leave my marriage and home with my daughter.  Additionally, after noticing delays in her gross mobility, particularly her walking, she was diagnosed with Cerebral Palsy at age two.  And now I was raising her on my own.  This seemed like more than enough to handle for someone who had just beat cancer, yet more challenges surfaced.

       First, survivors must get regular follow-up exams.  Since my cancer was Stage III, my exams were frequent and long.   For the next three years, every three months I had to revisit the place where I was forced to acknowledge my mortality, accept that my body betrayed me and was forever altered, and relive the same uncertainty, stress, and pain I experienced during treatment and was now trying to forget.  The exams became slightly less frequent but continued well into my recovery.  Second, I discovered I was "relieved" of my job, causing financial strife due to exorbitant medical bills and loss of income.  Third, finding new employment was a challenge because companies are reticent to hire people who have had serious illnesses.  Fourth, my history of cancer sabotaged any chance of obtaining health or life insurance that wasn't astronomically expensive.  Finally, by far the hardest problem was, and still is, the "cancer cloud" that constantly hovers overhead, reminding survivors that any stretch of good health can be instantly sabotaged with a recurrence.  I've been cancer-free for over 15 years and still panic at the slightest ailment thinking it could be a sign of something far worse.

     All of these factors fueled my feelings of isolation and defectiveness and I hated myself for not being as strong as I was before.  The feeling of solitude for cancer survivors is weighty because nobody understands your situation except other cancer sufferers, who usually only talk about their cancer.  It’s depressing and debilitating and erodes your self-esteem to the point where you feel like a fraction of what you once were.  Unexpectedly, the survivor finds it is now when the hardest part of the fight begins.

     Many people who never had cancer themselves but have lost a loved one to the disease feel a great wrong has been committed and want their beloved back, even for just one day.  They don't understand why survivors aren't elated to be alive because they feel the departed would probably give anything to be in their shoes.  I understand this is a difficult concept to grasp.

    The best analogy I can fathom is the circumstance of a veteran.  I don't know exactly how veterans feel, but assume it is incredibly challenging to fight overseas for months or years then be sent home to resume a former life.  What many fail to realize is that veterans’ former lives have, most likely, changed beyond recognition, as have the veterans because of their experience.  They may be grieving for friends lost in battle and suffer guilt for surviving.  They may feel conflicted for going home because their mission overseas is not finished, other soldiers are still there fighting, and people they were trying to help are still suffering.  They may have been exposed to atrocities they are struggling to reconcile.  They may have been injured and now need wheelchairs, walkers, prosthetics or other assistive devices to function.  Jobs, laws, technology and relationships at home are likely different, making it difficult to adapt.  People they knew before their deployment may have died or moved away.  And their children have matured or been born.  The plight of the cancer survivor is comparable as he or she experiences many of the same obstacles impeding the ability to resume an old role in a new world.

     Susan Nessim and Judith Ellis, two women who beat cancer at a young age, made a remarkable contribution to the cancer community with their book, "Cancervive: The Challenge of Life After Cancer" (Houghton Mifflin, 1991).  This practical guide validates the common and unexpected physical and psychological challenges cancer survivors face and suggests ways to address them.  Published nearly 30 years ago, little guidance existed to help cancer patients cope with the aftermath of survival.  Such material is still scarce, leaving a growing contingent of the population a relatively unacknowledged afterthought.  The book was the only resource I could find to help me.  I even discovered it on my own without assistance from a "survivor group."   What resonated with me most was their description of the three coping mechanisms to which survivors gravitate:

              1)   Denial: When survivors choose to completely dissociate themselves from the disease and may even deny they ever had cancer;

             2)   Involvement: When survivors regard their cancer as a profound life-changing experience and make it the centerpiece of their lives; and

             3)   Acceptance:  When survivors find ways to accept what has happened, put it in perspective, and integrate the experience into their lives.

Nessim and Ellis acknowledge that option one and option two each has its place in the recovery spectrum but fully subscribing to either strategy jeopardizes complete healing, which can only begin when option three is embraced.  Having finally found the book, I realized choosing denial as my sole coping mechanism was a mistake.

     Tired of being viewed as a sick person and angry that my life plan was thwarted, I longed to return to the happy, successful, and optimistic girl I was before cancer.  I wanted to reclaim my status as someone who evoked joy and peace in others, not worry or concern.  Eager to distance myself from cancer as much as possible, I underplayed and even refused to acknowledge my experience, hoping it would suppress my bitterness and confusion.  I thought denial, wine, and more lip gloss would help numb my circumstance, reclaim the years I lost, and move forward.  Unfortunately, this approach only masked my feelings of betrayal and injustice as well as my broken heart.  I still felt these emotions but nobody could see them because I wouldn't allow it.  Feeling under-appreciated, overwhelmed and misunderstood, I lived in pain and cried alone often.

     Two times in my life I contemplated suicide.  The first was when I was diagnosed.  Angry at God for handing me this sentence in the prime of my life, I wanted to trump him by killing myself.  My thought was to swallow all the sedatives, painkillers, and anti-depressants my doctor prescribed me at once so I would drift into a deep sleep and never awaken.  I was not one for slitting my wrists, hanging myself, or putting a gun to my head.  Too messy.  No, this was a much classier way to relieve myself of this anguish and die how everyone knew me-- as a mentally and physically wonderful person, not a troubled, diseased, and mutilated shell of a human being.  The second time I considered hurting myself was during the endless wake of survival challenges.  My pain, anger, and sorrow were unbearable.  I was depressed and saw no end to my plight.  Had it not been for my infant daughter for whom I was now responsible, I probably would have executed my plan.

     But one day things took a turn for the better.  Having moved back to Connecticut to be closer to my parents, I ventured to my mailbox and received an invitation to a Next Step retreat in Boston for young adults between the ages of 30 and 40.  It explained that Next Step's mission is to "shatter limitations and elevate aspirations" of teens and young adults with life-threatening illnesses by helping them rediscover their strength during their transition to adulthood so they can better plan for the future.  Doubting such a lofty goal could be accomplished in only one weekend, I was skeptical of the program and thought it would only amount to a few days of commiserating with other sufferers.  However, I RSVP’d “YES” anyway, mainly because it was a free weekend in Boston.  After the familiar two-hour drive on the Mass. turnpike, I arrived at my hotel, checked in to my room, and met my roommate-- a sweet and quiet girl with blonde hair and blue eyes.  She also survived breast cancer, but carried herself with more composure than I, who had become a crying and confused person having difficulty handling problems I once surmounted easily.  After we gave each other the abridged version of our stories, we rode the elevator down to the first floor to attend the welcome reception and meet the other “misfit toys.”   

     Upon arrival, I was pleasantly surprised to find that all the attendees were professional, stylish, smart, and kind.  For that evening, knowing we shared the same enemy let us rekindle the personalities that were once our lead actors before illness forced them to become understudies.  My optimism improved with every passing minute and I felt genuinely happy.   After enjoying hors d’oeuvres, drinks, and conversation for a few hours, everyone retired to their rooms for the night.
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     The next day after breakfast, we began by sitting in a circle, introducing ourselves, and sharing our stories.  Everyone listened attentively and offered compassion, support, and constructive suggestions.  Some cried, including me.  A lot.  Among others, I met two beautiful and accomplished women with inoperable brain tumors.  A man struggling to preserve his fertility.  A married mother of three who was allergic to the chemotherapy drug critical to her survival.  A  woman who was fed through a tube surgically inserted into her stomach because her throat cancer prevented her from eating.  A man who was given three months to live.  And a married woman with a young daughter losing her sight who exhausted all medical treatment options and was following an all-natural, holistic, vegan diet with hopes it would add more time to her life.  She brought all her own food, shakes, supplements, and teas.  Following introductions, a life coach conducted workshops which helped us clarify our feelings, fears, and goals.  We created art.  We played games.  We dined at upscale restaurants.  And we were treated to a spa treatment of our choice.  It was refreshing to enjoy these activities with similar young adults and for the first time since leaving the cancer center, I felt less alone.
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     I often think of the fighters I met during my journey, especially two women my age who were fighting breast cancer alongside me at Dana-Farber.  Despite our different personal situations and cancer types, sharing the same enemy unified us and we called ourselves "C-Sisters."  Together we laughed at funny stories, cried about our predicaments, and made sarcastic jokes about whether we could still be considered  "women" since we no longer had the attributes society seems to value most in the gender, namely hair and cleavage.  They finished their treatments before I did, then returned to their home states of Vermont and New York.  I was happy for them that they were done, but missed their camaraderie as I still had another year of treatment ahead of me. 

     Many times I have wanted to check in with my "sisters" and others I befriended at the retreat but I stop before writing that email or reaching for my phone because I fear any one of them may have lost their battle, like the vegan woman who passed about six months after the event.  This is the duplicitous element of developing relationships while battling cancer.  While no relationship is guaranteed to be completely devoid of difficulty, meaningful bonds formed during the cancer journey have a greater chance of causing pain because fear
usurps maintaining contact, leaving patients with unresolved emotions and no closure.  Nevertheless, the retreat was the single-most instrumental vehicle that enabled me to move on with my life.  I enjoyed meeting all the participants because I learned from everyone's unique experience and felt fortunate I had the opportunity to benefit from their presence, even if only for 48 hours.  I was also thankful I could offer the same to them.  This perspective encouraged me to stop crying and put my energies to better use.

     Cancer exposed me to another world which revealed the vast amount of pain people carry.  I met patients who regretted choices they made, like their jobs, partners, or never traveling.  Cancer was their wake-up call to change their lives before it was too late.  I was happy they had these revelations, but sad they lived entirely for others and not themselves.  I didn't realize the overwhelming number of compromises others made at the expense of their own happiness.   Always confident, optimistic, and not yet a mother, I almost always did whatever I wanted.  I don't believe in regrets because people don't go temporarily insane when they make decisions, but do what they need, want and can at the time.  Cancer reaffirmed my decision to live this way.
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     I learned not to assume anything about anybody because you never know what crosses people are bearing.  This philosophy increased my desire to help others, which boosted my self-esteem and gratitude for the important elements of my life like family, friends, a good reputation personally and professionally, and a sense of humor.  By stepping out of my own situation and connecting with others I realized all human experiences, regardless of circumstance, like love, loss, sorrow, and pain, are common and unify us.  I was able to accept the hand I was dealt and start playing it like it was the hand I wanted.  I rediscovered my strength and now regarded my illness as a gift.  During treatment I didn’t understand the tenet that cancer was a gift.  I thought of it as a gift you couldn't return or exchange but now realize cancer granted me more wisdom and experience by my 35th birthday that many don't achieve in their whole lifetime.  Cancer made my eyes bigger, my ears bigger and, most importantly, my heart bigger.

     My body still shows the evidence of my battle, including the scars inherited from my surgeries and the permanent tattoos given in radiation therapy.  For years I hated them.   Now, they're a reminder I was strong enough to conquer what everyone thought was unconquerable.  More than ever, I am thankful for my life and everyone in it.  I am more patient.  I forgive more easily.  I don't harbor resentment because it's counter-productive and unhealthy.  I revel in being a mother.  I kiss my family and tell them I love them as often as possible.  I am proud of the way I raised my daughter-- to be strong, independent, and take responsibility for her actions while remembering to always be kind and understanding.  I don't fear death because I am confident I do my best in every situation with love and consideration.

     I can't believe I ever thought about taking my own life.  I've learned I am loved more than I knew and have more to contribute to the world than I thought.  Most importantly, I realized my path will always be guided by love and hope which are far more powerful than fear and anger.  I am lucky.
  
¹Journal of the National Cancer Institute, March 2017
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