Tuesday, March 22, 2011

The Edge of Spring

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The Stupid Cancer Blog

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.

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