Monthly Archives: March 2011

Scanitis: When Cancer Screenings Fill You with Dread

Scanitis: When Cancer Screenings Fill You with Dread

I just scheduled my next round of mammogram and ultrasound screenings. My friends assume this is routine for me now—lord knows I have undergone enough tests to become an expert. But the truth is that a cancer screening will never be an ordinary matter. No matter how many scans I sit through, I will always approach them with dread.

I know I am not alone. Memorial Sloan Kettering social workers Penny Damaskos and Page Tolbert say that many survivors grapple with fear and anxiety around screening time.

“A week or two before the scheduled date, they would notice a change in their mood. Some felt anxious, some depressed, some irritable and short-tempered. Upon reflection, many realized what was going on: scanitis,” they write in their book, 100 Questions & Answers about Life after Cancer: A Survivor’s Guide.

Scanitis affects all survivors, but it hits young survivors especially hard. Most of us thought we were at the peak of our health before we got our first cancer test. Even if we had strange symptoms, we assumed they would turn out to be nothing. People in their twenties and thirties do not get serious illnesses.

Or so we thought. When we sat in the doctor’s office and heard that our test results were positive for cancer, we learned to expect the worst. Our loved ones try to reassure us. “Don’t worry,” they say. “It’s just a test. I am sure it will be fine.” But we have lost that blind faith. We know things don’t always turn out fine.

Alex was in his early thirties when he and his wife were having trouble conceiving a child. They both got medical workups to see if they could increase the odds of getting pregnant, but instead of learning about fertility, Alex discovered he had testicular cancer. It didn’t end there. After his first surgery, doctors realized it had saturated his lymph system.

The disturbing results kept coming. “Every time I went into chemo, I would think I was feeling alright, but then there was some unpleasant surprise. It conditioned me going forward. I learned that there would always be a piece of bad news coming out of left field.”

I learned to anticipate the worst after my diagnosis. In the days before a test, I would tense up. I would stress over small matters and have trouble sleeping. Most of the time I didn’t recognize what was bothering me until I arrived at the cancer center.

I wish I could say the anxiety disappeared after I left the lab, but it didn’t. I would experience a brief surge of relief, but then I would return to thinking it was a hollow victory. I knew how inadequate scans were; my oncologist told me most women find their own recurrences before tests can detect them. My husband would try to cheer me up by saying, “This is great news; your tumor markers came back negative.” But that was no comfort in it. My friend found out her breast cancer had metastasized to her brain one week after her markers came back clean. She died two years later.

No breezy reassurances could brush away the hard realities of cancer. The fact that I might be one headache, one bone pain, one screening away from terminal illness was never far from my mind, but scan time drove it home. As one 28-year-old survivor told me, “I was always so pissed that a blood test would determine everything.”

Some survivors handle the distress of screenings by ditching them. I could never do that; I feel too much responsibility to my husband and children to refuse medical care. Instead, I have found ways of managing the fear.

I have learned not to schedule a test for right after a vacation, or I would spend the entire trip anticipating it. Nor do I schedule a test on a Thursday or Friday, because I would have to wait through the weekend to get results.

I have also learned to make room for the heaviness that follows every test. I don’t rush back to work, the playground, or anyplace where I have to pretend that getting a cancer screening is the equivalent of popping out to the bank. Instead, I clear my day. I walk around, go to a matinee, spend hours in a bookstore, and let myself think and feel whatever I want. I also indulge in a little retail therapy. My husband accepts that in addition to the insurance co-pay for every screening, we also have a fashion co-pay.

I know I am lucky: most of my tests have brought good news. But I still don’t know if I will ever be cured of scanitis. It may be a chronic condition that I learn to live with.

The Edge of Spring

The sun is taunting me.  It is the edge of spring, but my body feels like winter. I am lifeless on the couch trapped inside a useless body.  It will rain tomorrow and I will have more time for mundane things again.  I cannot move.  I am paralyzed with my pain.  In the picture of my mind I am gardening feeling the warmth of the sun and joining the kids at play.  Today I should ask for help, but I can’t. It is not pride, but rather that it means I have succumbed to my forced dependence.  I feel guilty making my sons grow up too fast as they do what they can to care for me.  Our roles are reversed.  My denial is my shield.  It is like make up covering what’s real.  I am not fine.  But I cannot bring myself to say the truth.  Another day has arrived out of the blue, and time will pass before me as I remain unaccomplished and broken.  I should give myself permission to have these quiet days of rest, but rather I fight them and do not want them to exist at all.  I allow the frustration of things undone to creep in.  My 6 and 8 year old are taking the laundry downstairs and will come back up to pack their own lunches for school.  I am proud they have learned to be the little men of the house, but I am sad that this part of their childhood is stolen away because of me.  I cannot help but feel guilty that the choices they make are shaped by my inability to function.  They are missing a birthday party to take care of chores.  I am unable to drive them and they are quietly disappointed in missed time with their friends. 

That is how I was feeling only two years ago in the midst of chemotherapy.  The one thing I hear over and over from others is the idea that having cancer changes your outlook on life.  One of the first letters my husband received from a friend when I got my diagnosis contained such sentiment.  This friend too, was a young cancer survivor.  He was a college friend and the same age.  We had each gotten married around the same time right after college.  We had each had our children after 30.  We were all, not yet 40, with small children, lives, careers, stability finally just beginning to take hold.  It was difficult to accept in the moment as we both read the words of the terrible journey about to arrive.  Words meant to offer a taste of reality and encouragement.  ”I bet you and your wife look at life differently now”, he wrote.  Maybe that’s true now.  Back then, I had no idea what he really meant.

No matter who you are and where you come from in life, a cancer diagnosis forces you to take pause.  Suddenly the walls close in and you take inventory of your life.   Receiving a cancer diagnosis at a time in life when you are just getting started, well, it just doesn’t seem fair.  It is a childish reaction of the real anger that lies within as we panic wondering how much time we have.  Suddenly the things that take a lifetime to achieve are less important.  Survival rates have improved we are told in the doctor’s office, but it’s so much more that we grapple with than simply a contrived expiration date.  We are not at that point ready to just take an exotic vacation, check off a few crazy adventures from some bucket list and reflect back on a life lived.

Since my diagnosis, I have become deeply rooted in a community of other cancer survivors.  A club I never wanted to join, nor did they.  Cancer interrupts everything.  But for those of us who have not yet reached that time of life where we have enough to look back upon, it is isolating to feel stopped when we are just beginning.  Breast cancer was the furthest thing from my mind when planning my life at this age.  I had no idea someone healthy and young like myself at 39 could get this disease.  Now as I’ve crossed the line into 40, I am finding out how many young women, even younger than me get breast cancer.  While I consider myself lucky to be past the point of having my children, my later stage diagnosis makes me wonder when this all really began.  So many years undetected.  I have been angry about that.  Had I been diagnosed at an earlier stage of my cancer when I began my complaints, it is likely I would have received a less severe diagnosis around my late twenties to early thirties.  Now I simply feel “stuck in the middle”.  I am now turned 40, at the top edge of the “too young for cancer” group, and too young for the typical breast cancer age group.

Young women do get breast cancer.  That said, even though we are a smaller portion of the whole breast cancer community, we are more likely to be diagnosed with more aggressive and later stage cancer. One of the challenges is simply that we are not taken seriously when we have even the slightest of symptoms.  We’re often told, “you’re young”, and “it’s probably nothing to worry about”.  So we go on with our young busy lives never letting it cross our minds that there is cancer taking hold and growing inside.  I had complained of a sharp pain in my left chest for years.  I had seen doctors and been told several times I was simply too young to be ill and probably suffering stress from my busy young life.  Another doctor was content to tell me perhaps I had been suffering asthma caused by my exercise.  I was given asthma medication, but my tenderness and pain remained.  All through the years, I had done all the “right” things.  When my huge lump was finally found at 39, I felt side swiped.   I had a short career.  I had young children just starting school.  My husband had a new job.  We finally had a house and all of the responsibility that comes when you are no longer fresh out of college, but not yet middle aged.

Once the news was out and others learned of my large golf ball sized tumor and later stage cancer, I received much encouragement and pity.  I also felt irritated by questions that made me feel like it was my fault.  ”Didn’t you feel that lump sooner?”.  No.  The fact is, young women tend to be diagnosed with more aggressive, fast growing and later stage breast cancer because our “young” tissues are so dense and we are less likely to feel anything until it becomes a large problem.  The medical community tells you to get your “first” mammogram at age 40.  I got mine at 39 and then it was too late.  I was forced to take a moment.  I had to figure out what to do to survive and juggle everything on my plate.  At this point in your life being thirty something, everything is out of order and  chaotic as the momentum of one day bleeds into the next.  A young parent cannot simply take sick leave from raising her children.  As I reflected on the words of that first letter we received from someone who “got it”, it was finally sinking in how different it is to cope with a catastrophic illness at a young age.  A support system is what you need to simply get through the day, but at this point in my life, I was the support system for everyone else.

Because of my young age and my overall health otherwise, I was put through more intense and toxic regimens to slow the rapid growth of my monster.  My body went downhill quickly.  My children watched their strong mother melt away.  It was lonely at the hospital.  I was at times mistaken by other much older patients as being a daughter waiting for my mother.  ”How is your mother doing?” asked by a stranger, surprised when I got up wearing my plastic ID bracelet.  Most of my roommates at chemotherapy spoke of their grandchildren and they complained of vacations never planned.  Their self-pity made me angry as I watched their adult children my age escort and assist them through their ordeal.  Stuck in the middle with my small children too young to take life over; parents too far away and frail to be of assistance, I was alone.  Chemotherapy took my strength, my youth, my dignity, my identity and my social life.  I could no longer be a mother or wife.  I became dependent upon everyone around me, including my own children.  I am supposed to be there for them, not the other way around. They did not have relatives to care for them.  We were on our own to carry on with our lives and my illness.

I could no longer be myself as much as I tried.  I did look at life around me and found myself really understanding the cliché about life being short.  I was met by some with discomfort and coldness when I did show up at my children’s school functions wearing a scarf on my head.  I was excluded from certain groups because they pitied me or questioned my ability.  My usefulness was taken away.  I realized that many in my age group are not used to dealing with someone like me.  They don’t know what to say.  Perhaps I remind them that they could be me.  Perhaps what they are really thinking is what I used to think, “I’m glad that’s not me”.

Despite the many challenges dealing with cancer at this point in life, one thing never changes.  Cancer is ugly and cruel.  It has changed my outlook.  It has changed my husband and my children.  It was inside my body, but it caused so much damage on the outside.  Surviving feels like a moving target every time I am given a new pill, another test, another setback.  That first letter is rooted in our souls.  I used to listen to their reports and stories when our friend was going through his chemotherapy, and I remember not knowing what to say.  I remember wondering how they dealt with work and the kids.  Now we are forever connected in this ugly experience.  When you receive your diagnosis, you get a pile of brochures and booklets telling you what to expect.  None of those materials told me who I would get to take my kids to soccer practice when I could no longer drive.  Nothing prepared me for thinking how I would get the laundry done or how the grass would get cut.  Nothing prepares you to hear your children tell you that they miss playing with you.  I could not hold back my own tears when my 6 year old hugged me one morning and said, “I forget what you looked like before the cancer when you had long hair”.  Then depression and guilt looms as my 8 year old son helps his little brother pack his lunch for school while I lay on the couch.

It’s all those little things in everyday life that we take for granted.  When suddenly we cannot do those simple things.  It gives us pause.  It forces us to think upon our mortality.  It reveals our true vulnerability and the fragile nature of life itself.  Everyone warns you when you have children, “they grow up fast”!  That has a whole new meaning in the face of cancer.  Since then, I have learned to mourn the losses and accept life as it comes.  The resilience my children have shown propels me forward.  I realize they are much stronger than me and I have learned to shift my outlook on life to the wise innocence of a child.  Cancer interrupted our young busy lives.  My children taught me to focus on today.

Laura McGinnis

Read more at: http://hidden-dragons.blogspot.com/
I am a mother, a wife, a sister, a daughter, an athlete, a photographer, a psychotherapist, a runner, hiker, artist, musician, business owner, writer and friend. Oh yes, I like biking and camping quite a bit too. Before you start thinking I’m one of those crazy, fears nothing outdoors type, I’m just a regular woman who happens to have alot of passion for life. I “retired” 10 years ago as a psychotherapist & medical social worker to raise my 2 amazing boys. I suppose I took a maternity leave and never went back. I own a photography business which I run from my home in Pittsburgh, PA. I was diagnosed with breast cancer in 2009. Since 2010, I am a member of a breast cancer survivor dragon boat team. Something you can google as you try to figure out what that is…but I’m a paddler, not a rower. Just to make that clear! As for the rest, read my story. I am open and honest. My story reveals very personal details sometimes because I want those of you who are too suffering from cancer or know someone, to know that you are not alone.

The Forgotten Moral Imperative For Childhood Cancer

The Forgotten Moral Imperative For Childhood Cancer

The Forgotten Moral Imperative For Childhood Cancer
Should Pediatric Foundations Fund Young Adult Survivorship?

Childhood cancer never ceases to tug at our heartstrings. As a new parent, I cannot – nor ever want to – conceive of what it must be like for this scenario to unfold and become reality for many thousands of families each year.

Unlike every other age group over 18 years of age, pediatric cancer is a unique phenomenon in healthcare history, with a collaborative focus beginning in the 1950s.

1) It reflects a revolutionary way to think about disease management from an age-appropriate and “patient first” perspective.

2) It represents the first time that oncology decided to delegate clinical care based on an age range first and disease type second.

3) It signified a shift toward nonpartisan scientific collaboration that benefitted the greater good instead of any one single agenda

The result, 60 years later?

Overall, survival rates for childhood cancer have improved from less than 10% to 85%, with leukemia approaching 95%. This progress is attributable, at least in part, to age-appropriate standards of care across hundreds of multi-disciplinary institutional settings.

In 1955, the relatively newly christened National Cancer Institute (NCI) granted funds toward cooperative clinical trials for leukemia. Its success paved the way for additional grants for sarcomas and brain tumors – and eventually the Children’s Oncology Group coalesced into what it is today: an example of how operating in isolation and focusing on a specific body part is not a long-term solution for anyone.

In fact, so much progress had been made since the 50′s that attention finally began to shift to “quality of life” issues – because the medical community soon realized that you can’t treat a 6-year with cancer by baking them in a toxic Chernobyl-brand microwave oven without there being side effects, consequences and tradeoffs.

In 2003, the NCI released “Childhood Cancer Survivorship: Improving Care And Quality Of Life” (http://bit.ly/eaEe8k). It was the first time the concept of moral imperative was suggested – namely, when the pediatric oncologist says “You’re cured, go home.”, the story does not end when the patient is discharged.

This report determined that there were ~270,000 long-term childhood survivors in the US, many under the age of 40; a testament to progress. What’s more interesting is that nearly 2 out of 3 suffered from unintended consequences; detrimental late effects in the form of chronic conditions resulting from their being “cured” as children.

These unintended consequences included everything from infertility, osteopenia and diabetes to heart disease, cognitive impairment and secondary cancer. Even though no one prefers the alternative, the study showed that there are tradeoffs for surviving.

Enter the concept of “survivorship”, a term first coined back in the mid-1980s by a bunch of irreverent and precocious young adults fed up with the status quo, several of whom were themselves survivors of pediatric, adolescent and young adult cancer.

Out of this rag tag bunch came the founding of, among others, The Wellness Community (now the Cancer Support Community) and The National Coalition For Cancer Survivorship, both of which are two of the nation’s preeminent survivorship charities.

In 2004, the NCI redefined “cure” from the perspective of population science and patient outcomes. “Cure” no longer meant surviving 5 years. Cancer was now considered a chronic condition that you could live with like diabetes and HIV. The new NCI mission? “To eliminate death and suffering due to a diagnosis of cancer.”

Recently, The Children’s Oncology Group – now known as CureSearch – had also revised what “cure” means to their patient population. What used to refer to the very tangible “5 year survival” shifted to the more esoteric “assurance of psychosocial, educational, and occupational reintegration into a successful life.”

If that’s cure, when, if ever, are you actually cured?

“Survivorship” is now a 25-year-old healthcare term and is still not widely understood by the mainstream public. Perhaps that is why “cure” dominates the popular imagination.

“Cure” is sticky and tangible – it is a milestone, an endpoint, a box that can be checked. Survivorship isn’t sexy – it is amorphous, personal, evolving, and enduring. Funds devoted to finding a cure give us hope for a better tomorrow – someday. Survivorship support can and does change lives, every day.

Tens of thousands of childhood cancer survivors age out of pediatrics each year, after which point they are largely cast into a healthcare system grossly unfamiliar with their unique medical, social, psychological, economic, emotional and spiritual needs. They subsequently face inadequate care and unmet needs and become even more underserved.

And while efforts have been made to recognize this gap in service delivery as it pertains to underserved clinical and psychosocial needs, too many long-term childhood survivors continue to age out with no “what’s next” to help them start their college careers, socially reintegrate with dignity, understand their health risks, find age-appropriate peer support and navigate their lives as they enter the real world; in other words, to be “cured”.

The blessing of turning 18 is almost a curse; an insult to injury. Patients come from a continuum of care that cocoons them with, through and beyond their care nearly every step of the way only to get dumped into an antithetical system with no age-appropriate standards of care on how to transition from pediatrics to “everyone else.”

Enter the concept of young adult survivorship for patients 18-40. Following the model of pediatric cancer, this survivor-driven movement thinks about disease management from an age-appropriate and patient-first perspective. It rallies for both clinical and psychosocial care based on an age range first and disease type second.

And while “young adult” is still technically a part of “everyone else,” it is differentiating itself significantly through outreach, advocacy and disruptive citizen uprising.

Today, the young adult survivorship community serves as the “what’s next” for over 300,000 long-term childhood survivors, most of whom got “graduated” into this relatively unfunded, organic grassroots movement.

Whether you were diagnosed as a young adult or are in your 20s and 30s as a childhood survivor, this is not your father’s cancer society. In fact, The very nature of this community is to “ensure a survivor’s psychosocial, educational, and occupational reintegration into a successful life”; in other words, help them be “cured”.

Despite filling this important and generally ignored component of cancer treatment, most – if not all – young adult-specific nonprofit organizations struggle to stay afloat every year. They are the little engines that could, filling a gap that no one else will touch: ensuring that young adult patients and survivors reach cure.

So what is the responsibility on the part of pediatric cancer foundations–and the corporations who support them–to ensure that the needs of children don’t get ignored starting on the day those survivors turn 18? Do they not owe it to these kids to ensure the continuity of their care and well-being when they age out and become young adults?

Where are the pediatric cancer foundations raising millions for young adults? Has the time come for these thousands of local, regional and national charities to diversity their philanthropy and support the young adult world? Can they simultaneously fund critical pediatric research and patient services at the same time as the young adult organizations that will take over as those children step into the next phase of their lives?

Yes.

This is the uprising. This is the conversation. Progress begets progress. Welcome to the young adult cancer community. We are the “what’s next”.

This is an appeal to all pediatric cancer foundations and major corporations who support pediatric cancer with socially responsible cause-related campaigns. Consider directing some of your funding to organizations that focus on the young adult community.

They change patients’ lives every single day. They are the charities where abandoned long-term childhood cancer survivors go to seek social refuge amongst their peers, to navigate the unique issues they face, to engage in meaningful survivorship and find whatever their version of “cure” is. This population matters. It is time for young adults survivorship to get the attention and financial support it deserves.

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

Cancer Lessons: When All that Hallmark Stuff Suddenly Rings True

A few years ago, I moved from Manhattan to a small town on the Navajo Nation in northern Arizona. It was daunting to trade the convenience of the city for the stark realities of the desert. But one deeply held conviction carried me through the painful goodbyes: if my cancer came back, I didn’t want New York to be my last adventure.

Maybe my husband and I would have followed our dream of living in a beautiful place surrounded by a rich culture even if I hadn’t been diagnosed with breast cancer. Or maybe we would have done what most young people do: talked about it for years, confident we had plenty of time to make big life changes somewhere down the line.

But having cancer taught me the danger of postponing what’s important to you. If you don’t pursue it now, you may run out of time.

Don’t get me wrong. I am not one of those people who is deeply grateful for the lessons cancer has bestowed upon me. I would give them all back in a second if I could be spared the heartache and terror that accompanied them. But since I went through the trouble of confronting a life-threatening illness, I may as well benefit from the gems of wisdom I earned.

One survivor I talked to captured the ambivalence many of us feel about cancer lessons. Meredith was diagnosed with ovarian cancer at 30 during her long-awaited first pregnancy. She said cancer prompted her to live each day to the fullest and stop putting things off until tomorrow.

“I used to read that Hallmark crap and hear people say it. Now I know they say it for a reason,” she explained. “I used to take life for granted. I took health for granted. I took having children for granted. It came crashing down. Now statements like ‘Things happen for a reason,’ and ‘Don’t ever forget to feel blessed’ have real meaning for me. But I hated hearing that from other people. You can’t say that to me if you haven’t had cancer yourself.”

Most young survivors have no time for saccharine clichés. But we’re willing to embrace the real truths that come from our time in the trenches.

Often the first lesson we learn is a deep appreciation of disease-free life, even in its simplest moments. The year after treatment, I remember times when I would be walking down the street and all of the sudden I would feel of the sun on my skin and think, “This is what it means to be alive.” I knew how lucky I was. I could have been recovering from chemo or checking myself into the hospital for another surgery, but instead I got to relish the ordinary pleasure of sunshine.

Appreciation and gratitude soon lead to a desire to find new meaning—to make the most of the second chance we have been given. Denny was one of the youngest partners at his advertizing firm when he was diagnosed with nasal cancer at the age of 28. A year later, he decided to leave it all behind to pursue a relationship in London. “Going to London will save my life. That’s what I need right now. Not another job in advertizing and going to Starbucks every morning and getting a macchiato. That’s not enough anymore. Macchiatos are not enough anymore.”

Before diagnosis, many young people might have taken their time, stumbled around, searched for meaning in all kinds of strange places. Cancer is clarifying. It cuts through the fog of youth and reveals what really matters.

Like me, Kathleen was a New Yorker who talked about moving out west for years. She and her husband hoped to settle in Haley, Idaho, but kept postponing it. Then she got diagnosed with breast cancer. “It was as clear as day,” she said. “We decided to move out west. Not even 9/11 had been enough to make us leave New York, but cancer was a catalyst. I had my reconstructive surgery in January, we looked at houses in February, and we bought a house in March.”

My family’s decision to move out west wasn’t as rapid as Kathleen’s, but it too gained momentum from a diagnosis. Now, when I am lying against a redrock canyon wall, looking at the enormous bowl of turquoise sky above me, and baking like a lizard in the hot sun, I know this is what it means to be alive. And I am so thankful that Manhattan was not my last adventure after all.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

Parenting Small Children in the Wake of Cancer: Yet Another Thing to Feel Guilty About

A few days ago, my son burst through the door with tears streaming down his cheeks. He wasn’t hurt. He hadn’t been frightened by a bully. No, what caused the anguish was something more familiar to us: my son had lost something—in this case it was a paper lantern he had made in school—and his anxiety spiked.
After I hugged him and devised a plan for tracking down the lantern, I felt a stab in my heart: his distress over misplaced objects is my fault. My cancer made him overly sensitive to loss.

Being a parent offers a multitude of opportunities for guilt. Major life events like divorce and foreclosure add to the ways we think we are screwing up our children. But parenting in the wake of cancer brings a unique set of opportunities to blame ourselves.

This is especially true for young survivors. We are not retirees with adult children. We are new parents whose kids are still small when cancer strikes.
The guilt starts in the beginning, with our prolonged absences. We log hours in the chemo chair, days in a post-op room, weeks in the transplant wing—that’s all time we are not spending with our kids.

Three weeks after my son was born, I checked into the hospital for my lumpectomy. I put his baby pictures around my bed and felt confident he was safe in my husband’s care. But then I spoke to a friend who said, “I would never leave my newborn overnight. I don’t know how you could do that.” I did it because I had no choice, but suddenly I felt like a negligent mother who was insufficiently attached to her baby. In other words, the guilt kicked in early.

Even when survivors return home, we may not have the stamina to respond to our children’s needs. Kathleen had three kids under the age of seven when she went through months of painful surgeries for breast cancer. “I was forced not to parent,” she said. “I had to sit back and watch everyone else take care of my kids.” While she appreciated the extra load her husband and family members took on, she felt the sting of being sidelined, and she worried her children would think she preferred lying on the couch to playing with them.

She also hated the terrible realities her children were now exposed to. One day, her four-year old said, “Daddy I made my own sandwich today.” Kathleen’s husband praised him, but then the boy added, “So when Mommy dies I can make my own sandwich.” Kathleen had a good prognosis; none of her doctors expected her to enter a terminal stage. Yet still her little boy sensed the gravity of the disease and braced himself for its worst outcomes.

This is exactly the kind of thing parents want to shelter kids from. But when they see us bald, sick, or terrified about getting test results back, there is no hiding the elephant in the room.

And we are left to wonder how that elephant is changing our children. My son has no memory of me going through treatment; he was just a baby. But as he grew into his toddler and preschool years, he must have sensed the anxiety in the house when my checkups and scans rolled around.

Two years after treatment, my surgeon felt a new lump in my incision. It appeared to be scar tissue, but since it was so close to the chest wall, he had to rule out metastasis. He scheduled a biopsy for the next day, and to take my mind off the fact that I was about to find out if I had terminal illness, I brought my son to the playground. While he was playing in the sandbox with his pals, I quietly told a friend how scared I was. Suddenly, my son’s head whirled around and he called out, “Mommy! You’re scared? Why? What’s wrong?”

I didn’t even know he was listening, but his little antennae were tuned right in. After that we started noticing his dismay over losing things. First it was the rubber ball that sailed into the river, then it was a birthday card that blew out of his stroller, then it was the apartment he left tearfully when we moved. He is a good-natured, adaptable kid who loves adventure, but he still hates to say goodbye.

I’ve talked to other survivors whose children have a similar sensitivity. Theresa is a thoughtful mother whose leukemia had relapsed more than once. She told me, “My son has a deep, age-inappropriate anxiety about loss. He is too young to be thinking about these things. I am trying to come to terms with the fact that this is the childhood he has and at least my love has been consistent.”

In the end this is what gives me the most guilt: that cancer is one of the forces that has shaped my son’s childhood. I know there are many influences that make him who he is—the temperament he was born with, how we parent, where we live—but cancer is still one of them.

I hope I have modeled some of cancer’s better lessons, like relishing the present moment, but I can’t shield him from cancer’s extra dose of anxiety. I just have to help him cope with it.

For guidance on how to talk about cancer with your children, check out these excellent resources from the New York University Cancer Institute.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

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