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.

Monday, March 7, 2011

Sense of Direction

I would like to share with you an excerpt of a story by Michael Gartner, president of NBC News:

My father never drove a car. Well, that's not quite right. I should say I never saw him drive a car.  He quit driving in 1927, when he was 25 years old, and the last car he drove was a 1926 Whippet.  "In those days," he told me when he was in his 90s, "to drive a car you had to do things with your hands, and do things with your feet, and look every which way, and I decided you could walk through life and enjoy it or drive through life and miss it."  At which point my mother, a sometimes salty Irishwoman, chimed in: she said. "He hit a horse."

"Well," my father said, "there was that, too."

So my brother and I grew up in a household without a car. But, sometimes, my father would say, "But as soon as one of you boys turns 16, we'll get one." It was as if he wasn't sure which one of us would turn 16 first.  But, sure enough, my brother turned 16 before I did, so in 1951 my parents bought a used 1950 Chevrolet from a friend who ran the parts department at a Chevy dealership downtown.  It was a four-door, white model, stick shift, fender skirts, loaded with everything, and, since my parents didn't drive, it more or less became my brother's car.  Having a car but not being able to drive didn't bother my father, but it didn't make sense to my mother.
So in 1952, when she was 43 years old, she asked a friend to teach her to drive. She learned in a nearby cemetery, the place where I learned to drive the following year and where, a generation later, I took my two sons to practice driving. The cemetery probably was my father's idea. "Who can your mother hurt in the cemetery?" I remember him saying more than once.

For the next 45 years or so, until she was 90, my mother was the driver in the family. Neither she nor my father had any sense of direction, but he loaded up on maps -- though they seldom left the city limits -- and appointed himself navigator. It seemed to work.
After he retired, my father almost always accompanied my mother whenever she drove anywhere, even if he had no reason to go along. If she were going to the beauty parlor, he'd sit in the car and read, or go take a stroll or, if it was summer, have her keep the engine running so he could listen to the Cubs game on the radio.  If she were going to the grocery store, he would go along to carry the bags out -- and to make sure she loaded up on ice cream. As I said, he was always the navigator, and once, when he was 95 and she was 88 and still driving, he said to me, "Do you want to know the secret of a long life?"

"I guess so," I said, knowing it probably would be something bizarre.

"No left turns," he said.

"What?" I asked.

"No left turns," he repeated. "Several years ago, your mother and I read an article that said most accidents that old people are in happen when they turn left in front of oncoming traffic.  As you get older, your eyesight worsens, and you can lose your depth perception, it said. So your mother and I decided never again to make a left turn."

"What?" I said again.

"No left turns," he said. "Think about it. Three rights are the same as a left, and that's a lot safer. So we always make three rights."

"You're kidding!" I said, and I turned to my mother for support.

"No," she said, "your father is right. We make three rights. It works."  But then she added: "Except when your father loses count."
I was driving at the time, and I almost drove off the road as I started laughing.

"Loses count?" I asked.

"Yes," my father admitted, "that sometimes happens. But it's not a problem. You just make seven rights, and you're okay again."

I couldn't resist. "Do you ever go for 11?" I asked.

"No," he said.  If we miss it at seven, we just come home and call it a bad day. Besides, nothing in life is so important it can't be put off another day or another week."

My mother was never in an accident, but one evening she handed me her car keys and said she had decided to quit driving. That was in 1999, when she was 90.  She lived four more years, until 2003. My father died the next year, at 102.
A few weeks earlier, he had told my son, "You know, Mike, the first hundred years are a lot easier than the second hundred." At one point in our drive that Saturday, he said, "You know, I'm probably not going to live much longer."

"You're probably right," I said.

"Why would you say that?" He countered, somewhat irritated.

"Because you're 102 years old," I said..

"Yes," he said, "you're right." He stayed in bed all the next day.  That night, I suggested to my son and daughter that we sit up with him through the night.  He appreciated it, he said, though at one point, apparently seeing us look gloomy, he said:
"I would like to make an announcement. No one in this room is dead yet"

An hour or so later, he spoke his last words:
"I want you to know," he said, clearly and lucidly, "that I am in no pain. I am very comfortable. And I have had as happy a life as anyone on this earth could ever have."
A short time later, he died.

I miss him a lot, and I think about him a lot. I've wondered now and then how it was that my family and I were so lucky that he lived so long.  I can't figure out if it was because he walked through life, or because he quit taking left turns.  Life is too short to wake up with regrets. So love the people who treat you right.  Forget about the one's who don't.  Believe everything happens for a reason.  If you get a chance, take it &; if it changes your life, let it.  Nobody said life would be easy, they just promised it would most likely be worth it."

And so as I reflect on Michael's story of his aging parents, the last part is so true. About being with those that treat us right.  I also began to think upon the wisdom of making only left turns as they grew older, just to be safe.  I suppose that is true, that as we grow older, we grow wiser and learn the safer path, even if it is less conveinient.  But sometimes we take wrong turns and there are one way streets.  Even when you think you are certain you know where you parked, after making circles to find your way back, it can be quite a journey. Sometimes when we make a wrong turn, in the moment we think we are doing the right thing. In the journey of being lost without knowing, sometimes it is what has made us what we are if we are able to look back and let go of how we got to the destination and accept where we are. But the reality is, sometimes we make the same mistakes again. Have you ever made the same wrong turn over and over to get to a place, because that is how you got there the first time? I've done that.

I have made many many wrong turns in my life. Some because I was naive and adventurous. Some were from being vulnerable and trusting someone else. And some were from simply not keeping focus on what was in front of me and looking too far ahead.

I was walking the streets of NYC this weekend with friends.  I hadn't been in the city in at least 20 years. Though there were many familiar sites, memories and love for the city, I still found myself overwhelmed by keeping track of directions.  NYC for many who have not been there is a scarey place.  Perhaps because of its size, or simply fear of the unknown.  But really much of the city is on a grid.  If you keep in mind where you started, you can make only left turns and come right back to where you started.

Though I would have likely found my way alone, it was always comforting to be part of the group.  If one of us forgot a turn, another took over and so on until we found our way through the city.  For some of my group, it was their first time to NYC.  We made a few wrong turns looking for things, but found new sites to adventure instead.  Going on an adventure sometimes means not holding to a plan or following a map.  The key to finding our way back was in trusting one another and in making turns toward the things that looked familiar.

Haven't you always found a sense of relief when you stumble upon a familiar landmark after many wrong turns? When we know we are not alone in not only making wrong turns and not being perfect, we can be ourselves even more. I wish I could say I will never make another wrong turn again or find myself feeling alone or lost. I wish I could say I will never be hurt again by those who would treat me wrong.  But then, I think I might miss out on the adventure of life when getting lost yields something good or helps me find something amazing I wasn't looking for.

I suppose the story made me think upon this past year and those I have lost because of my disease, and those that remain.  Life is short and I have had to let go of many things, stop and ask for directions or let go of what I cannot find.   I have also gained many new relationships and adventures I would have never been a part of,  for it not for the "wrong turn" cancer led me.  Cancer does not define me, but it has changed my life.  I did not used to accept saying that cancer has changed me. I believed that despite my changed outer looks, inside I was still the same person.  I did not like to think that such a small word could put my life in directions I would have never ventured.  What I have come to learn is that I have company for the ride.  I am not alone.  At times the journey is lonely, but when I remember I do not have to find my way back alone, I can keep walking ahead.

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