Saturday, January 19, 2013

13 intentions- family


It has been five days since my last chemo infusion.  I am still feeling extremely sick- but trying very hard to rally.  It is hard to believe that a little over five months ago my whole world changed.  But it did.  And now, I am just trying to figure out how to make sense of what is now normal.  I can get caught up in feeling so unique in that notion- but in reality, what is normal for any of us changes from one day to the next.  What was normal last year can no longer be normal today.  I think that sometimes pain happens when we refuse to adjust when things can no longer stay the same.

I thought I would share another page from my 13 intentions book.  This page is about holding the intention of family.   My days can become so busy- running late for school and work, quickly doing homework before dinner, bath and bedtime - impatient for the hour or two I can steal away in the dark of night to make art work.  I want to have more presence in those moments I share with my family.  Slow down and feel how blessed I am.

This is difficult for me because I am someone who enjoys moving fast.  I am not sure exactly where this came from.  I find efficiency to be beautiful.  I have often said that the real reason I am so efficient is that I am lazy.  The quicker I can get a task completed, the more time I can sit around doing nothing... but in reality, I rarely ever sit around doing nothing.  I speak quickly and hate it when people request that I slow down.  The world sometimes feels like it moves so painfully slow that I might pull my hair out. (guess maybe I should pick a different saying).  I commented once to my daughter that I was the rabbit in a world full of turtles.  She told me that the turtle won the race.  (I am going to be in such trouble when she is a teenager).  I had a moment of clarity a couple of years ago where I thought that perhaps I don't want to slow down - or stop because I am afraid.  The moment I entertained the notion, I quickly dismissed it.  I guess it was really scary.  

So, how do I slow down?  How do I stop myself from missing the beauty that is my life?  I don't just think that this is something that would be nice to change in myself.  I understand that it is crucial for my survival.  My hope is that by learning how to hold the intention of family, I can make the first steps in being a rabbit in recovery and maybe figure out what I am afraid of.


Friday, January 18, 2013

climbing out - PFC club


Yesterday was difficult emotionally, physically, and spiritually.  I curled my body up under the covers and tried to feel better.  My stomach in knots, cramping, fingers hurting, and everything is spinning.  Agitated, isolated, and feeling desperate for all of this to be done.

I keep trying to remind myself that on Tuesday, January 15th, I received my last full chemotherapy infusion.  I will continue to receive my Herceptin until mid September,but it doesn't come with all of the horrible side effects.  Each day I will feel better- and I don't have to worry about another round to knock me down again.  Of course, in the next couple of weeks I will need to begin worrying about surgery- but not now.  So now I have joined the PFC club... Past Final Chemo.  I am currently 4 days PFC.

We celebrated the end of chemotherapy with a lovely cake and a visit from my sister.  She took some amazing photographs of me that I am excited to play with.  (like the one above).  Breast cancer takes so much from your physical appearance - I find it to be empowering to take those images of who I am back in some way.  To manipulate them and claim them as beautiful.

Caya got in bed with me this morning and we went over her spelling words for her first ever spelling quiz.  She then looked at me and said she was scared.  She said she was scared that I was going to die.  I reminded her that I am just sick from the chemotherapy and that all of my doctors are pretty confident that I will be okay.  I also told her that if anything changes, I would let her know.  I think it is important not to make promises I can't keep.  I also think she needs to know that I am not going to hide things from her- which will only create more anxiety.  It was a hard conversation.  She said she wants me to live to be infinity.  I said I do to- but only if she lives to be infinity with me.

I wrote this poem a few months ago after being diagnosed - thought I would share it.  I dedicated it to my children.



Bleeding stars and tears

And fearing all the years

That I might be without you



Fill me to the brim

The poison rushing in

aching to be near you



cutting out the rot

this battle I have fought

with eyes that only see you



Skin tattooed and burned

Lessons I have learned

When happiness surrounds you
 

So mine isn't a haiku, but if you are interested in reading some beautiful haikus-
check out Recuerda mi corazon here.


Sunday, January 13, 2013

13 Intentions

What do I want this year?  How do I want the year to play it self out?   I feel that the new year is such an important place to both be thankful for the year that has passed - and to visualize the things that I want for the coming year.  For the last five years, I have made a vision board on a large cork board in my bedroom.  I fill the board with visual images of the dreams that I hope the year will hold.  It is a work in progress- and I allow myself to add things to the board throughout the year.  I have received many of the things that I have placed on that board- the biggest of which being my son at the age of 42. 

At the end of 2011, my partner and I did a fun exercise- where we pretended that we were toasting in 2013, and we spoke of all of the things that we were grateful for that had happened in 2012 (even though the year hadn't happened yet).  Now looking back, I have to say that not many of those things happened.  I surely didn't wish for a life threatening illness that would wreak havoc on my body and family.  Oh well.

The other day, I saw a beautiful art journal that a very talented fellow art therapist named Gretchen Miller made for 2012, where she had laid out visually her intentions for the coming year. (I totally recommend you check out her site for more information and for a beautiful video of her intentions.)  What I loved most about this was that it wasn't just a mechanism to make wishes- but rather about setting intentions.  How do I want to be this year?  Where do I want to set my focus?  Such important questions that we all should be asking ourselves - cancer or not.  And these are things that I actually can do without too much divine intervention.

I decided that given it was 2013 - and 13 is historically considered an unlucky number - and I am hopelessly oppositional (wink wink) - that I would create a book of 13 intentions.  I wanted to complete the book to share with you, but lets face it- I am undergoing chemotherapy and things do not always go as planned.  But I did want to share with you my list of intentions and the first page of the book.

I am using collage, writing, painting, drawing, and whatever else comes to mind to express what I mean by each intention.  So far, it has been a lot of fun and at the same time challenging.  I am including a butterfly on each page.  I love butterflies.  I know that they have become a kind of tired symbol of metamorphosis- but I can't deny that ts is a symbol that resonates with me.  I feel very much like I want to emerge from this journey changed.  Something better than I was before.  I want to be able to fly where I once couldn't.  I want the way I see the world to be profoundly different- and I don't want to ever lose that perspective.

The first intention I tackled was health.  I chose the Kale leaf to represent the food I nourish myself with.  I drew a body on a musical composition to represent a body in harmony.  I chose the blue to represent water.  I was thinking about drinking more water- but also taking the time to drink more water.  I can be so busy in the morning that it will be almost lunch before I realize that I have not had anything to drink.  Everyone's needs come before my own.  This has to change.  I am an important part of my family, and must take care of myself so that I can continue to take care of those that I love.


I almost considered scrapping the butterfly the other day because I became superstitious around something that happened with my daughter.  I haven't shared my book with her as of yet- although I intend to when it is finished.  Out of the blue, she told me, "Mommy, when you die, you can visit me as a butterfly."  I got a little scared.  Is she psychic?  Am I foretelling my own demise?   I quickly breathed, kissed her, and told her that I promised that I would - but for now, I am right here and I am planning on being here for a long time.  I then looked at her, hoping to get some look confirming that what I said was true.  She smiled, and said, "I know."






Tuesday, January 1, 2013

Lucky

I think about 2012 as my bipolar year- marked with periods of tearful happiness and some of the lowest lows I have yet to encounter in my 45 years on the planet.  But there have also been those days of just being- the day to day living that happens between the thunderstorms and sunshine.  The days I take for granted. 

I am someone that generally likes to look for what might not be readily observable to most.  Some say it is because I am oppositional.  If everyone believes one particular way, I am the one trying to figure out why we are all wrong.  I understand that life is complicated.  That rarely is it black or white, but rather it is uncomfortably gray. 

It would be easy to discount 2012 as one of the worst years of my life.  The year that I was diagnosed with cancer.  The year I watched my body fall apart under the spell of chemotherapy.  My year of isolation and too many tears to count.  The year where I looked in the mirror to see someone I didn't recognize. And what is worse, I didn't carry this burden alone.  It was shared with my family.  Although I wanted to find ways to protect them, my children had to bear witness to something so hard for their little hearts to comprehend.

But 2012 was also the luckiest year of my life.  The year I was diagnosed with cancer.   Caught before it metastasized to other parts of my body and killed me.  Lucky because I have health insurance- and opted last year for the best insurance (even though we were thinking about cutting it to save money). Lucky, because I live thirty minutes from the Stanford Women's Cancer center, where I have a team of amazing oncologists, surgeons, nurses, and radiologists who are not only brilliant but also caring.  Lucky because I believe in my heart that the chemotherapy did what it was asked to do, and killed every last cancer cell in my body.  Lucky because through this experience I have been showered with so much love and support from people in all parts of my life-  high school friends, college friends, students, close friends, and family.    Lucky, because I have spent the last three months adoring my son all day and being here when my daughter came home from school.  This time with them has been the greatest gift.

I also feel blessed because my diagnosis has given me clarity.  Nothing like an introduction to your mortal self to understand what isn't working in your life.  So, I want to make some changes in 2013.  I don't want to work 5 jobs and still feel financially overburdened.  I want to be closer to my family.  I want to spend more time with my children.  I want art to be more central in my professional life.  I want to live 2013- and every year after that eyes wide open and with intention.  I am in the process of creating some art with these intentions in mind, but more on that later.

For my art piece today, I wanted to create a lucky talisman that I can bring into 2013.   I honestly feel that 2012 birthed a warrior in me that I really didn't know existed.  I am lucky that she is part of me. She is my lucky talisman.
After drawing her and adding color, I scanned her and printed her on some nice shrinky dink paper.  Baked her at 300 degrees for five minutes  and voila!  My own little pocket talisman.  I might make an even smaller one- but for now, she is perfect.


I set her up so she watches me while I am on my computer.  If she could speak she would say, "Hey You!!!   You are strong.  You can do it.  I know you can.  Don't waste your time feeling sorry for yourself.  You have been blessed with many gifts.  Use them.  You are a survivor."


Wednesday, December 26, 2012

Happy Holidays


what I learned today

That my husband can do an excellent job creating Christmas magic at 3am Christmas Eve all by himself.
That my children are happy with so much less than what  I sometimes imagine.
That my best can change from day to day, and that is not only normal- it is okay.
That it is okay to allow others to help you.
That letting go of perfectionism can sometimes allow for laughter and joy.
and that when you need to rest and take care of yourself, those that love you will understand... even if they are just three years old.




Sunday, December 23, 2012

Being flexible

As a clinician, one of the things that I believe is that flexibility is a basic necessity for long term mental and physical health.  If you are able to adapt, you can survive.  I teach coping strategies to help to that end.   I often give the example to my students about a strong tree that doesn't move with the wind and breaks - as opposed to something more supple that goes with the wind and rides out the storm.  I tend to be a big strong tree - that sometimes tries to impersonate a willow.

But how do you become flexible?  Is it innate?  Do your parents teach you flexibility by showing you how to handle small and large catastrophes with grace? I have read that in general women tend to be more flexible than men.  I look at my children, and notice that my daughter was born a big strong stubborn tree.  A gorgeous tree.  But one that has a very hard time bending.  My son on the other hand, seems to take things in stride.  I don't feel like I did much different parenting - although I am sure I did.  Your child's innate temperament impacts how you parent each child.  My mother says that as a child I was difficult- high strung, never slept, emotionally sensitive, physically sensitive, and stubborn.  It is interesting the way as mothers we sometimes get to mother tiny versions of ourselves.  I have a whole new respect for my own mother.

But what does this have to do with Cancer?  Well, on December 11th I was told that chemotherapy would abruptly end due to the increasing neuropathy in my feet and hands and some possible foot syndrome.  I was extremely frightened about this notion.  I wanted to finish all six rounds of TCH (Taxotere, Carboplatin, and Herceptin).  Doctors feared that the chemo could cause extensive damage.
I had to shift my understanding of what was happening.  Scary.  I needed something to change my vision of what was happening.  I needed a visualization that would center around my healing.  I wrote the following story - when you read it, imagine a kind of WWII narrator from one of those short news reels that were often shown in theaters prior to the featured presentation...

The  cancer cells had no idea what was happening.  Why would they?  They had been allowed to grow undetected for years in a comfortable section of my left breast.  So comfortable they were, that they didn't venture beyond one lymph node in my left armpit.  
My doctors were brilliant and extremely versed in breast cancer warfare.  After sizing up the enemy, they quickly surmised a course of action to destroy it.  Armed with knowledge, experience, and research, they began their attack.  A strategy that would begin with chemotherapy.  Experienced fighters - Taxotere and Carboplatin would join forces with a newer player, Herceptin to begin the battle.  
With the first infusion, the cancer cells were taken completely off guard.  The medicines found their target immediately and went to work annihilating the enemy.  Cancer couldn't fight back.  By the third round only scar tissue remained.The fourth round killed any remaining cells that might have been hiding from view during the first three battles.
My body was another important force is these battles.  It worked tirelessly with the medicines to do what was needed to win this first battle - and win we did.  The war is not over yet.  The defense forces suffered some injuries, and so for now, my body will rest, train,  and gain strength preparing for the next battle.  Thank you chemo for a job well done.



I know, it is kind of silly.  But it helped me to reframe what had happened.  I didn't want to feel like I had failed.  I wish I had the time and energy to do a comic strip- maybe something I can work on when I am better.  After I wrote the story, I really did try to work on the healing portion.  I began changing my diet again, riding on the exercise bike, maintaining better sleep patterns.  I started to be happy that I no longer had to sit in the big girl chair.  My hair began growing.  And now I was on to my next challenge- figuring out how to cope with surgery.

But, this very long blog post is about flexibility.  My oncologist called Wednesday and asked about the neuropathy- which has improved greatly on the new medication.  He feels it is important to continue chemotherapy.  The one thing that helps me to be flexible, is that I trust my team.  But it is still hard.  I spent a lot of time crying.  I hate chemotherapy.  It hurts - physically, emotionally, spiritually.   But I also know that thus far, it has been extremely successful in obliterating my tumor.  So, I have been working on changing my attitude once again.  Which has not been easy.  I went in on Friday.  My pattern tends to be that I feel fine the first three days, and then it hits me hard - and remains difficult for the rest of the week.  Which means that it will hit on Christmas.  I will do my best to take care of myself, take my medications, and stave off the misery of chemo during the holidays- but I feel crestfallen.  As a mom, I have been preparing for Christmas.  I love Christmas.  I have a basket full of projects needing to be done, gingerbread houses not yet baked, pictures and snowflakes I haven't hung... and now, I don't know what will happen.  Flexibility sucks.  But breaking sucks more.
   

Tuesday, December 11, 2012

Of all the nerves

This has been a hard week- and it is only Tuesday.  Preceding all chemotherapy appointments, you must do blood work and meet with your oncologist.  These precautions are necessary to insure that it safe to continue chemotherapy and also to help with any side effects that you are experiencing.  My biggest side effect at this point is neuropathy.

Peripheral neuropathy is damage to the nerves of the peripheral nervous system.  At first I noticed some burning sensations in my finger tips - interspersed with the feeling that my fingers and toes had fallen asleep.  Currently, three toes on my left foot and two toes on my right foot are completely numb and tingling - all of the time.  My fingertips also have periods of numbness, but it is intermittent.  The bottom of my feet are also sore, making walking difficult.  I can not go barefoot because the sensitivity is unbearable.  My legs are extremely sore which also make walking challenging.  I am generally very flexible, and have no problem laying a flat palm on the floor without bending my legs.  At this point, I can barely bend over with fingertips dangling at my shins.  The leg pain is also constant and it radiates through out my thighs and calves.  In addition my legs, ankles, and fingers are swollen.  And to top if all off, my right eyelid is twitching like mad.  Sounds like fun, right?

So, of course I mention these symptoms to the nurse practitioner, who I have to say is awesome, because my oncologist is away on vacation this week.  She tells me that it is concerning and proceeds to do some tests that involve pricking me in the foot with a sharp object.  I could feel the pressure of the object, but not that it was sharp.  This coupled with the fact that the pain is now constant in my feet and legs, had her questioning whether or not we should proceed with chemotherapy.  She spoke with the other oncologist on duty who agreed.  No more chemo.  If  I continued, the neuropathy would only get worse.  Chances are good that I would end up in a wheelchair.  And these side effects can often take a year to dissipate after chemotherapy.  In my heart, I know this is the right thing to do.  I can't imagine the symptoms I already have lasting a year- and I super can't imagine them getting worse!  It is already challenging to do the things I need to do in my life as it is.  But, I have to say my heart was broken.

I wanted to soldier through- fight every battle to defeat this thing that has invaded my body.  I worry that with each thing that I can not do, the odds become less in my favor.  And although I am trying very hard to put things in a more healthy perspective, I feel a bit betrayed by my body.   I also didn't like the fact that I had no idea my last chemotherapy session was my last one.  It came and went with little fanfare.  Had I known, I would have celebrated, given roses to the nurses, taken photographs and videos documenting my heroism.  This ending of chemotherapy that I am currently faced with feels so anti-climactic.  I feel defeated.

So, I am trying to find the silver lining and reframe this setback as something different.  Trusting that my body held on for as long as it needed until every cancer cell was destroyed.  Trusting my body as it twitched and tingled, burned and ached to warn me that it was time to stop. Taking pleasure in this gift of the month of December, where I can celebrate the holidays with my children free of nausea and exhaustion.  And getting myself ready for the next step on this journey.