Tuesday, July 19, 2011

Another day as usual...in the waiting room

Well, today I woke up entirely exhausted again. This has been going on for about a couple weeks now. Some nights I sleep , usually with the assistance of yet another prescription that has taken up residency on my night table. Most nights it's a grueling fight to rest as my body writhes in pain, dripping sweats and just plain insomnia. This fatigue of late is different however. It's the, "I can barely function" sort of fatigue that grips every muscle and clouds my memory. I've had this sort of fatigue before in combination with other things I'm noticing. I've had sudden appetite changes and stabbing pains like lightning on my right side. Of course I've found every excuse to diminish or dismiss these things that have put a sudden brake on my life. For six weeks now, I have been nursing what is believed to be a possible injury although I never noticed a particular event that started all of this pain. I am fairly active and involved in water sports. I race competitively as a part of a dragon boat team and I also practice and exercise nearly every day. I have felt strong for the past several months. Occasionally I even join my husband for a run, although I find that rather boring compared to paddling on the water. We tease each other about which is more boring, paddling on a boat or running. In the end, we trump each others reasons and realize that although it's fun to prepare for a race, I go to practice to simply be on the water. He simply goes out the front door to run for the high and has not yet signed up for a race.

Although I have backed off my workout routine, my back and my ribs continue to hurt more and more. It has grown from annoying to agonizing. At the end of the weekend, the pain was so intense I could not breathe. Concerned about a broken rib or something sprained, I went to the hospital. After the usual x-rays and blood work, I was sent home with pain medications that I already have at home. I took a little time off from practice and rested with medication and ice every night with no change. I decided I wanted to move again and consulted with my doctor. It was agreed that as I am in good overall shape, I should get back to working out and practice as long as I hold back a bit and stop if it gets worse. Well, here I am six weeks later going to PT every other day and finding no relief. After two weeks of doing all the prescribed things I should do to improve, I find myself declining more.

I don't like it when the doctors look at you with concern and order more tests. Tomorrow I go to the hospital for a bone scan. Naturally the thing I fear the most is that cancer has returned. I've read everything about metastatic breast cancer and where it shows up next. As much as I want to find out that there is something more to all of my pain and weakness, I do not want to hear what's in the back of my mind. I suppose many people who have been diagnosed with cancer and have gone through recovery must worry about cancer returning every time there is some unexplained illness or list of symptoms. I know I have put off going to the hospital for a few weeks in hopes that my pain would subside after some PT and rest. No such luck.

And now as much as I want life to return to normal, I am suddenly back to asking my kids to carry the laundry after I was able to bench press their body weight. I have spent the past year working hard to regain my health and strength. I tried this new sport I love weeks after completing my chemo treatments last summer and never looked back. As the snow began to fall, I turned inside working out faithfully until I could paddle again on the water this spring. I have felt good and strong enjoying life again. I do not want life to be interrupted yet one more time. I am trying to be hopeful, but I can't help but worry that tomorrow's tests will tell me what I don't want to hear. I suppose I am hoping that I will feel silly for all of the worry. I felt that way two years ago when I felt all of these same symptoms. "What if I have cancer or something"? And then I shook my head thinking how silly it was to think of such dramatic results. It was surreal the day I received the dreaded phone call with the bad news after a series of tests. Denial is a powerful way to cope before and during cancer. But once you've had cancer, it's difficult to deny that it might return. When all goes wrong with the body, it's the first thing on the mind.

My husband will take off work tomorrow to sit with our children as I go through a very long day at the hospital. My heart is heavy and I am frustrated with grief that I am dealing with these current issues after taking such good care to be healthy. I have little patience for the things that put me down. I fight with anger for my strength and losing it represents something different to me than just feeling weak. Others have been kind and want me to rest and heal so I can return to life again, but I feel helpless when rest yields no results. I feel frustrated when I take care of my body but I don't know what's wrong. I have scheduled my first Reiki session the day after tomorrow. It is the one thing this week that I look forward to as I strain to hold on to positive energy. It will distract me from waiting for the doctor to call after my tests.

I received another compliment about my boys angelic behavior at therapy today. We have a routine when it comes to attending all of my doctor appointments. Bring lots of stuff to do and sit quietly. I am so proud of them as they do not complain and are wonderful company, but I can't help but feel guilty that this has become routine for them. I wonder what impact all of this will have on them in years to come. I witness in them a peace and calm and an early onset of empathy. I see how nurturing they are around my friends' younger children. For them, spending countless hours in waiting rooms, treatment rooms and at chemotherapy has become the norm. At their age, it is all that exists in their recent memory. What it was like "before", has become faded even for me and all but gone for them. Though I'd rather see them busy at play outside, they are content doing the quiet things they can do until I am done. Occasionally we make a special day of it and get treats together at our favorite coffee shop. They like feeling "grown up" holding their hot chocolates while I sip on my coffee in the same kind of cup. I suppose the tradition had its start when a nurse told me long ago that I should try to eat something before blood draws or treatments, and all I could manage was a sweet cinnamon apple fritter. I have not tired of getting those sticky savory globs of dough warmed to go.

I suppose tomorrow will be no different. Comic books and snacks are packed and ready for the long day. We will stop at our favorite spot on the way to the hospital. I will watch my sons anguish over which pastry choice will win over another. Maybe some think that children shouldn't be in hospital waiting rooms. It is not my first choice for them, but as I look back at all the time they have indeed spent with me in these places, they enjoy the simple time we have spent together. They do not show fear toward these places filled with sickness, and when we talk, they mostly remember sitting with me sipping on hot chocolate discussing our plans for when we return home. We take each day as it comes and deal with things the best that we can. I will be at the hospital much of the day and we will spend some of that time together snickering over the funny parts in the comic books. They will not be anxious or fearful and I will say hello to all of the hospital staff I have come to know so well. And so, with all of my worries put aside, tomorrow will be just another day as usual...in the waiting room.

Monday, May 30, 2011

Un-clarity of mind

I was going to write something...but now I've completely lost it. My brain has not been working lately in that capacity. I have been struggling to keep a straight thought lately. Chemo brain? I know many joke about such a condition, but I have become a believer. It seems to be a great excuse anyway for everything misplaced, forgotten or turned upside down. The amazing thing is, I always seem to know where my keys are in the house.

My son came to say goodnight. He likes to stall with a long snuggle and a little story from the day...and another glass of water.

What was I saying? What was I even going to talk about? I have no idea. It's gone. Lost in some part of my brain that was burned away by a chemical cocktail meant for a few cells somewhere else in my body causing so much trouble.

I will continue to write, but for now it has been quiet at the keyboard. Frustration sets in as I stare at the medication bottle I must open every day to ingest the tiny little pill I love to hate. The drugs meant to keep the cancer away. The pill that changes a part of my personality with its not so pleasant effects.

Another part of me works hard every day to remain physically strong. As I accomplish shifting my body toward the shape of an athlete, I am finding the new identity I am comfortable to wear. Pushing all winter has given impetus to my health and strength, but in doing so I have crossed some line into a new world. My goal has been to train for racing with my team. I am a member of a dragon boat team.

Next weekend will be the first dragon boat races of this season for me and my team. Winter has been long and difficult this year and so the excitement builds. I live in the Northeast and so much of training for this sport goes indoors in the gym. Even as the weather breaks, the rivers are high and dangerous. The water shows its unexpected power every day. The surface appears calm, but the power and force of the current lies beneath churning the unknown debris. Cancer works like that. Things look smooth on the surface while underneath there is unseen trouble.

And so, part of this journey is shifting from the gym into the boat to reacquaint ourselves with paddling on the water. It requires respect and focus to disturb the angry force with only a paddle to cut the thick serenity. It has become hot quickly this weekend and there is not enough cool oxygen in the air to keep the mind clear. There is nothing else to think about but to keep in sync with the paddler in front of me. Keep in time. Plunge the paddle into the thickness. Breathe. I hide the fact that my heart is pounding out of sync with my breath, and I become dizzy with the strain. I find the reward in working together and I finally understand it is less about the body and more about the mind.

The clutter of thoughts sinks under the spring current of muddy water. The serenity of motion propels me forward. My body is spent and at times I wonder, why am I doing this? I return the next day and the day after that. It is on the water that I am allowed to go barefoot; to not worry about covering scars. On the water, there is no chemo brain or separate identity. Many professions, many walks of life, many levels of fitness all melt into one effort to move the boat. It feels good to feel strong and move forward. There is peace in letting the mind clear hearing only the sound of the water's wake the boat leaves behind. The journey of healing has taken me to unexpected places, and now the wake is finally settling back into the glassy surface.

Saturday, May 14, 2011

Outlook Expressed

The one thing I hear, is the idea that having cancer changes your outlook on life. The first letter we received from a friend when I got my diagnosis of breast cancer contained such sentiment. We were all, not yet 40, with small children, careers, stability finally just beginning to take hold. This friend too, was a young cancer survivor. 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. I thought it was simply a cliché meant to offer understanding.

I am now a part of a club I never wanted to join. Saying the words, “cancer survivor” does not yet easily roll off my tongue. When it comes at a time in life when I am not yet looking for gray hairs, it is especially isolating as an identity. I thought breast cancer was an older woman’s disease. I felt side swiped. I had a short career. I had young children just starting school. Being thirty-something, everything is out-of-order and chaotic as the momentum of one day bleeds into the next. Reflecting on the words of that letter we received from someone who “got it”, it was finally sinking in how different it was to cope with a catastrophic illness at a young age. He was the only friend we knew our age who had cancer. Even now as I write this, we remain uniquely apart from our peers facing this disease and how it has changed our lives. A support system is what is needed to simply get through the day. At this point in my life, I was the support system for everyone else.

Our children watched their strong mother melt away as my body quickly weakened during treatment. It was lonely at the hospital and especially at the breast care specialist. “How is your mother doing?” asked by a stranger, who was surprised when I got up wearing my plastic ID bracelet. Most of my room-mates 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 who were my age escort and assist them through their ordeal. There I was, with my small children too young to take life over; my own parents too far away and frail to be of assistance. In the beginning, you get a pile of brochures and booklets telling you what to expect. None of those materials told me how to hold back my tears when my 6-year-old hugged me one morning saying, “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 motionless. I am supposed to be there for them, not the other way around. It was then I realized my children’s ability to cope would depend on taking my lead. I strayed from the usual pity train and began to smile my way through treatment. I’m not saying I took lite of it, but rather I chose to change my attitude and mental outlook. I established stronger emotional boundaries with those that would take pity on me or brought me down. I surrounded myself with those who knew me best and would understand how to lift me. Since then, I have learned to mourn the losses and accept life as it comes. People tell you to keep a positive attitude. It doesn’t always come easy, but it is a choice that has the power to change things. “That’s what he meant.” I realized.

I have certainly had my moments, but one thing I discovered as I faced all the difficult treatments was that people smiled back when I smiled. Others felt inspired and encouraged as I shared my new outlook. I received many positive notes and a new cheering section began to form in my life. I shared this with my husband and my sons which served to strengthen them. The reflected smiles boosted my strength. I watched my sons cope without fear and their resilience connected us with roots of an oak tree. The language of self-pity was absent in our home and our positive outlook expressed daily.

That first letter is rooted in our souls. I remember wondering how they dealt with work and the kids. Now we are forever connected in this ugly experience. It’s all those little things in everyday life that we take for granted; when suddenly we cannot do those simple things. 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. 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. We now leave the dishes in the sink and cuddle up to a good book. Cancer interrupted our busy lives. My children taught me to focus on today.

Friday, May 6, 2011

New York Times & ACS Publication

Wonderful and unexpected news:  my April self-portrait has been posted on the New York Times photo gallery of cancer survivors.  In a book to be published next year by the American Cancer Society, it will comprise 200 to 250 "Picture Your Life After Cancer" submissions that were featured on The Times website.  My submission out of over 800 others has been selected for the ACS publication. 

To view the portrait on The Times website:  http://www.nytimes.com/interactive/2010/04/08/health/cancer-survivor-photos.html#/4dabbe5bd141b95dcd000014/

If you are directed to the main photo gallery, it's this one featured in my April blog entry:

Many thanks to Karen Barrow, Producer of Health, NYTimes.com for this amazing opportunity.  Please take the time to look at the gallery and all of the unique submissions so many brave survivors have posted.

Posted on the New York Times website gallery:

The beginning of knowing comes in interpreting the first impression. We look upon others and begin the story. My diagnosis of breast cancer brought a shift in my perception of self. I looked even deeper inward as the outside began to fall apart. Others treated me differently.  I found an urgency to pick up my camera. My comfort zone behind the lens moved as I wanted my young sons to have recorded memories of time spent together. With a photograph, we have the power to stop time. Looking into one, we can travel back to feel that moment. I have a new identity as a survivor. I do not know what the future holds. My past has shaped me. Survivorship is a fight. Life is a gift. I got my first tattoo in celebration of completing treatment. Cancer has been my hidden dragon. The Chinese reads "Dragon Slayer."

Life Ever After

Life Ever After:  A short story about moving on just past the line of treatment back into life.  Facing post treatment issues as a young breast cancer survivor.  Posted on Stupid Cancer blog.


Tuesday, April 26, 2011

Grass Clippings

For most people, cutting the grass is not a significant event.  As a matter of fact, as much as we wish for the grass to become green after the cold of winter, wishes become complaints of time spent mowing it.  Prompted by the noise of lawn mowers and the smell of grass clippings, I went to the garage to begin the first chore of spring.  Today, for me, was a significant day of grass cutting.  Not only is it the first time the grass needed cut for spring, it was the first time I was able to do it in two years.  The last time that I cut the grass is deep in my memory.  It was a turning point that would begin an unknown journey down the road of cancer.  Isn't it strange how certain things like that trigger a memory?  A chore, a sound, a smell?

Two years ago, the tractor broke down while my husband (who usually cuts the grass) was out of town.  I got the push mower working and began the task of making our yard match the neighbor's fresh cut level.  I was tired that day and so the work seemed difficult.  The fact that I had to use the push mower added to the difficulty.  That, and our yard exists on a slope.  By the time I was done, my arms were stiff  and my chest felt the pain of pushing a mower up a hill for two hours.  The pain I felt lasted for days.  I was a little out of shape and so like anyone else, I figured the pain would diminish in time to cut the grass again.   That was the last time I used the lawn mower. 

That pain never went away and led me into the beginning of my journey of illness.   Other symptoms arrived shortly after cutting the grass that day two years ago.  My arm swelled and the sleeves on my tops grew uncomfortably tight.  My fatigue continued that summer and the yard became a burden.  Normally I have spent hours in the garden, unaware of the sun setting on the day.  That summer I could no longer even pull the weeds.  Finally I was treated for a case of cellulitus in my arm, and went on a few rounds of antibiotics.  Later, a lump found in the shower and swollen lymph nodes proved to be cancer.  The grass continued to grow longer than usual that summer.  I spent fewer days outside in the sun.  As the grass grew and the weeds replaced a garden absent its tender, the neighbors noticed.

Last year, the grass grew.  The neighbors came and cut the grass.  Friends came and pulled the weeds.  Sunflowers grew in the untended garden from seeds that had fallen over the winter as birds fed.  As I went to the hospital for chemotherapy day after day, the chores got done by those who stepped in to help.  My husband too, found relief in the care of friends and neighbors who got the things done he had no time to do while caring for me.  All summer last year, our lawn mower sat cold in the garage.  The old tractor that didn't work that one day I needed it to, was adopted  and found a new home.

After many spring rains, the grass has grown tall after a long winter slumber.  A day of sun mixed with storms offered a short window to get outside.  The gas container was still full after sitting untouched for two summers.  A new strength has replaced my fatigue this season.  It feels strange to begin to do the things others have done for me for so long.  I have no time line to complete my chores as I once did before I became sick.  My priorities have shifted, but my new strength enables my independence again.  I must find my way back into the habits of the seasons. 

With a few pulls of the string, the cold mower resists.  I'm about to give up, when the last pull starts the engine.  It sputters after being silent for two years.  I begin the all too familiar walk into the plush new grass with the storm brightened sun on my back.  The engine bogs down with the thick tall grass still soaked from the storms of the previous day.  The sound of the mower and the smell of fresh cut grass triggers my memory.  I smile as I realize what I am remembering, knowing how far I've come.  Thick grass clippings accumulate under my wet shoes and I feel happy that tending my yard is no more a burden.  I am anxious for my young children to return home from school and enjoy the new soft yard.  This spring is ready for the playfulness of children and the scented memory of fresh cut grass.

Friday, April 15, 2011

Self Portrait

"The self portrait has captivated artists and photographers for centuries—with good reason. In making a self portrait, you become, simultaneously, the subject and the object, the creator and the creation, the hunter and the hunted. Certainly, many artists have practiced it for self promotion and self aggrandizement. But self portraiture can also be a tool for introspection and self exploration. Of course, it may simply be a record of your physical appearance at a given time and place, if such a thing as a simple record is possible."  Excerpt from an Art Textbook

Self Portrait   April  2011

What do you see?  Does a picture really say a thousand words?  I have been judged by my appearance on many occasions in my life.   I have judged my own appearance on more than one occasion in my life.  I've gained weight.  I've lost weight.  I've had a hair style I didn't like.  I've worn clothes that made me feel confident.  I've worn those magic boots that make me feel kick ass for the day.  I've changed my mind ten times as I've peered into my closet hating everything I see.  I've bothered to ask someone how I look when I've already decided I don't like what I see in the mirror. 

We focus on our appearance.  It is a part of our identity.  It is the first thing that others know about us.  It is the first place we are judged by others.  Our appearance can be something we embrace or fear.  As much as a self portrait can be a study of introspection, it also can be an opportunity to step back and look upon what others may see.  It is not the same experience as when we look into a mirror.  When we look into the mirror, it is too easy to look away or change what we see.  A self portrait is a moment captured.  A work of art.  An emotion expressed.  A message left for interpretation.

The beginning of knowing someone usually comes in interpreting the first impression.  We look upon others and begin the story.  It seems to be something that we do, even if we are not aware.  I have always attempted to go through life accepting those I meet without judgement.  I like to know more of the story.  Sometimes the outside package doesn't tell the whole story, or the real story.  How many times do we find ourselves caught up in the moment, making assumptions and without realizing, an impression is formed. It is a natural human reaction to prepare ourselves or protect ourselves for how we are to relate.  How we see ourselves and carry our posture in front of others can help us find our way into relationships; or leave the wrong impression.  Sometimes, if we are patient, what we find on the inside leaves us in complete surprise.  For some, the outer mechanism of body language and appearance is a camouflage of defense.  Still, it can also reveal the inner psyche of struggle or strength. 

When I was a child, I learned the lesson, "don't judge a book by it's cover" when I met a girl in my class that for all outward appearance, seemed conceited.   For a time she seemed rude and overly confident as she turned her back to me ignoring my obvious attempts to communicate.  I simply wanted to ask her to play and find out if she would be interested in being friends.  I quickly formed a negative attitude when she seemed cold and distant.  One day as she turned her head and her hair blew over her shoulder, I noticed a strange contraption on her ear.  It was then that I learned she was deaf.  Suddenly, my impression of her changed with one detail.  We became good friends.  Play mates.  I learned how to communicate with her.  She taught me that what you see at first, isn't always the whole story.

When I became sick with cancer and began chemotherapy treatment, my body quickly changed.  It was difficult for me to accept as each day I looked into the mirror and saw the ugly changes treatment had shaped.  My diagnosis of breast cancer brought a shift in my perception of self.  It was not just about my breasts or the culture of sexualization that shaped my thoughts.  I looked even deeper inward as the outer me began to fall apart.  Cancer began in that part of my body, but it changed a greater whole.  Others treated me differently. 

I have since seen many photographs and projects demonstrating the truth about breast cancer.  Each one is different.  Most I have seen so far, express the disease process sharing the changes surgery and treatment have shaped.  Upon my diagnosis, I found an urgency to pick up my camera.  As a photographer, it is rare that I am featured in my family pictures.  My comfort zone is behind the lens looking outward.  I asked my husband to take the camera from me before I began treatment.  Trading places, he understood.  I wanted my young sons to have recorded memories of time spent together as life stood unchanged, for that moment in time.  I knew that as time marched on, without the assistance of photographs, my sons would one day struggle to remember what life looked like before cancer took hold.  One day, memory would not be enough.

I was diagnosed around Mother's Day, May, 2009 with stage 3, metastatic breast cancer.  I found a hard lump in my left breast after a sore arm and chest pain prompted me to do a self exam.  For months I had been suffering pain and swelling and had undergone treatment for cellulitis.  My tumor was a large grade 3 rapidly growing high risk type.  Tests revealed that my cancer had metastasized and immediate treatment and surgery was imperative.  The treatments left my body bloated, scarred and weak.  My long thick hair was gone in two days.  It has not grown back the same and continues to thin on my current medications.  In the past several months, I have been recovering from all of my treatments and surgeries.  I have been working hard to take back my health and build strength.  Chemo and radiation were effective, but also caused alot of damage.  My heart tissue was scarred by radiation and my heart capacity pumps 50% less than it did before treatment.  I breathe much harder to get the oxygen to my muscles now.  With each hard breath, I am determined to keep moving.  I have a new identity as a survivor.  Currently in history, there is no cure for cancer.  I do not know what the future holds.  My past has shaped me.  I live in the present.  Survivorship is a fight, not a free ride.  Life is a gift.

I decided to get my first tattoo in July of 2010 to celebrate getting through radiation, surgery and chemo.  Cancer has been one of my hidden dragons.  It hides within.  The Chinese words mean Dragon Slayer.  I never thought I would be someone who would get a tattoo.  And now as it rests on my shoulder,  it is hidden from me unless I turn back and look into a mirror.

See what you see in this portrait.  I have learned to see that my strength has been built by my weakness.  What is hidden from my own eyes is what makes me whole.

Leave comments and expressions.

Saturday, April 2, 2011


I had the TV on one mid afternoon while I was making lunch and stopped what I was doing to watch one of those prescription drug advertisements.  I always love at the end of those commercials when they speed read a host of warnings and possible side effects making you wonder what is helpful about the drug in the first place.  It made me think of all of those product labels and health warnings out there on the market.   Everything from foods, paint and Christmas lights have some warning about cancer.  Even some cell phones and common electronic devices we use every day come with warnings.  One such warning reads:
WARNING: This product contains chemicals, including lead, known to the State of California to cause cancer, and birth defects or other reproductive harm. Wash hands after handling.
The above warning label is 10 times its original size.  I seem to remember a brief time in recent history, the only place I saw such labels warning about cancer, was on cigarette packaging.  I thought I was washing my hands every single time I use the remote control because of all those nasty germs.  So far though, it seems only the State of California knows about this.

These warning labels seem to be on everything anymore.  Do we really heed these warnings or think about them?  When it says cancer, do we consider what that means or do we ignore it thinking "that won't really happen to me"?  Cancer has become such a common word.  When people hear the word, does it really strike fear and loathing that the labels should evoke?  I know, it is really more of a disclaimer than a real warning.  But should we dismiss it so easily?  Have we become desensitized? 

We may not yet understand everything that causes cancer, but there is one thing that remains clear:  remission is not a cure. 

Maybe instead of the usual warning label: "known to cause cancer", it should read:

Chemotherapy may not be right for everyone. Women who are pregnant or nursing should not use Radiation. Women who are trying to get pregnant, may not be able to after receiving many miserable months of chemotherapy and/or radiation.  If you've never worn a wig before, now is your chance.  These treatments are horrible, not fun and include all of the following and possibly more that are too numerous to mention below.  Chemotherapy may help you survive longer, but is not a cure and does not guarantee quality of life.

Side effects may include:
- Dizziness
- Nausea
- Vomiting day after day after day
- Balding, loss of eyebrows, eyelashes, body hair and loss of dignity 

- Soft, brittle nails which may fall off
- Attention focus issues and severe mood swings
- Swelling of joints and unbelievable pain
- Overall weakness and inability to get up off the couch
- Loss of relationships and friends who don't like to be around sick people
- Loss of the ability to enjoy life, go on walks or play
- Loss of money

- Anxiety, depression and fear
- Loss of employment
- Insurance rejection
- Headache

- Shortness of breath
- Chronic fatigue and misery
- Dehydration
- Dry mouth

- Dry skin and chronic infections
- Horrible pain that will make Morphine seem like water
- A permanent room at the cancer ward 

  • Chemotherapy may last several months causing all of your veins to collapse
  • Chemotherapy may make you sterile if you are pre-menopausal or haven't had a chance to have kids yet
  • If you survive Chemotherapy, you may need to continue taking pills that you can't afford and cause similar side effects for the rest of your life.
  • Radiation may cause lasting tissue damage and pain.
  • Chemotherapy is not a cure and may not prolong your life.
  • All chemotherapy and radiation does not work the same for everyone and you still may require surgeries to remove cancerous growths
  • If you don't like blood work, needles, surgery, medical tests, MRIs, bone scans, X-rays, CT scans, or lying motionless on a hard surface in an uncomfortable position for hours day after day...you are pretty much screwed.
  • Don't believe all the statistics you hear.  It doesn't matter when you get your hospital ID bracelet.
I don't know how or why I got cancer.  I don't know if it started with a gene, a virus or exposure to some environmental hazard I ignored.  Perhaps if I heeded all warnings we know of, and took away all of the possible blame,  I still might be fighting cancer anyway.  As much as we do know about cancer these days, it seems we know even less about it.  Are people living longer after going through chemotherapy and radiation than they did 40 years ago?  Perhaps the statistics don't matter much when you're sitting in the hospital under an IV pole wondering if you'll become a statistic.  If you don't know what it's like living with an illness like cancer, just read the warning label again above.  It's not comprehensive, but it gives you an idea.

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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