A young adult patient with a pontine glioma.

Cancer is the most horrifying diagnosis with no regard to age, race, or gender.  Fortunately, that dreaded “C” word has not been directed at me.  However, cancer consumed the last year of my life.

Cancer first haunted my 22-year-old friend and coworker.  Just starting her adult life with a full-time nursing job and unexpectedly diagnosed with stage four Hodgkin’s lymphoma. The silver lining:  Hodgkin’s is the most curable cancer.

At 22 she struggled with losing her gorgeous ginger locks, being a burden to those who care about her, and fighting with insurance to receive half her pay from disability.  I answered anxiety-ridden texts and phone calls at all hours.  I listened as she cried in fury over denied PET scans as the insurance company required yet another copy of her medical record.  I accompanied her to doctor’s appointment as her “chemo brain” could not process the multitude of information, even with her nursing background.  I am using “I” a lot and I am not even the one with cancer.

She is now cancer free, but still deals with anxiety, the ghost of being a cancer survivor.  Also, yearly CT scans, meeting her yearly deductible in one visit — a bill most young adults are not responsible for.

Next, cancer preyed upon my 64-year-old mother.  I awakened to a phone call stating my mom was brought to the emergency room.  Then the “C” word came out of the doctor’s mouth, ovarian cancer.  Silver lining here: Ovarian cancer is manageable with proper treatment.

I thought I knew what to expect. But, my mom, with her little medical knowledge, relied heavily on me.  My mom had three hospitalizations during her 8-month battle:  hernia surgery secondary to ascites caused by cancer, neutropenia, and the actual tumor bulking.  She needed the support, so I lived at the hospital between my shifts.

My mom is in remission and back to work.  She was paid in full while she battled cancer as she used every sick-day she earned over 25 years.   Hopefully she stays healthy with her destroyed immune system.

I also have a daughter in elementary school who understands cancer better than most.  The devil disguised as cancer shrouded her oldest friend, whom she met as a toddler.  I will never forget receiving the call from her grieving mother explaining that her daughter has diffuse intrinsic pontine glioma (DIPG).  A cancer with no effective treatment and no chance of survival.  A diagnosis with no silver lining.

My friend did not return to work and spent eight months fulfilling her daughter’s bucket list in between hospitalizations and radiation treatments — relying on generous donations to pay for her family’s needs.   At her daughter’s funeral, I saw my friend: a frail, withering version of herself.  The words she shared were elegant and strong, but her internal battles were messy and vulnerable.

Three unique stories with the theme of cancer being the worst full-time job with no paycheck or benefits for the patient or caregivers.   The burden of treatment and financial toxicity associated with cancer are real.  Individuals with a history of cancer have higher out-of-pocket costs for subsequent medical care.  Cancer survivors are more likely to miss work because of their health and this may affect employer-based insurance options.  Undoubtedly, others have similar stories.  If you don’t, I promise you will.  The statistics are against you with a lifetime probability of one in three of developing cancer.

As for the friends and family, the American Cancer Society offers sympathy for caregivers, but acknowledges the best support is to ask for assistance from those who are willing to help.  Connecticut recently revised its Family and Medical Leave Act (FMLA) act to allow for partial paid leave for 12 weeks, funded 100% by mandated employee contributions, covering only 17% of workers.

My experiences have left me with specific questions regarding cancer care.  Where is the support for family and friends who are part of the battle?  Why aren’t CT scans for survivors viewed as preventative, as they enable doctors to detect reoccurrences early?  As a society I challenge us to do better to decrease the burden of cancer.

I tell my story to highlight what can be changed.   With healthcare at the forefront of political debates, now is the time to focus on making cancer more manageable for patients and caregivers.  Challenge insurance companies to cover tests in full that help detect cancer early.  Call for further revision of FMLA expanding the mandate to cover more employees and provide full paid leave.  I would not change my involvement in any of the stories and will continue to be employed by cancer working towards policy changes, despite it being the worst full-time job none of us applied for.

Victoria Saccoccio of Bolton is a nurse practitioner student at the University of Connecticut.

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3 Comments

  1. I am a seven year brain tumor survivor. I would never use my illness to demand more from the Connecticut taxpayer.
    Jim

  2. Thank you for writing in on this crucial topic that does not get the attention it deserves.

  3. Your stories of unending support to those you love are inspirational. I lost both parents to cancer and it is truly a horrible disease. I hope someday we can put it in the rear view mirror.

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