Archive for June, 2011

The Beacon of Light Tour: A Road Trip to Recovery

Sunday, June 26th, 2011

When I first got the news that I was done with chemo, I was so excited to finally move on with my life, back to business as usual.  But, the realization that my life will never be back to business as usual hit me like a truck.  For the rest of my life, I will always be faced with the fact that my cancer could return. 

According to the American Cancer Society, “A woman with cancer in one breast has a 3- to 4-fold increased risk of developing a new cancer in the other breast.  The relapse rate for patients diagnosed with Stage I breast cancer is 20 to 30 percent and about 75 percent of recurrences will occur within five years of diagnosis.  Research also suggests that tumors that over express the growth-promoting protein made by the HER2 gene, present in 25–30 percent of invasive breast cancer tumors, tend to behave aggressively and be more likely to recur.”  And when breast cancer metastasizes, it tends to go to the bones and the brain.

I absolutely, under no circumstance, want to find myself sitting in that big overstuffed lazy boy chair hooked up to another chemo bag again.  Never ever ever again!  

So to avoid a recurrence, it is very clear to me that living my life just as I did before I was diagnosed with cancer would fall into Einstein’s definition of insanity. 

“Insanity is doing the same thing over and over again expecting different results.”  So, simply stated, if I don’t want my cancer to return, I must do things differently, I must change. 

But what exactly do I need to do differently?  What do I need to change? 

Breast cancer is a tricky thing.  It is caused by so many factors, the first and foremost, genetics.  This I cannot change.  But there are environmental and psychological factors that I do have control over such as the food I eat and the thoughts I think.  I can take supplements, exercise, meditate, and change my negative thought patterns and feelings.  Louise Hay, spiritual healer and cancer survivor, says cancer is anger and deep resentment that eats away at you from the inside out.  Get rid of anger, get rid of cancer. 

It seems pretty straightforward, doesn’t it? Just change what you eat, exercise more and control your thoughts.  Ha!  I liken it to learning to play the guitar at age 40.  It looks easy enough until you realize your fingers are set in their ways and there is no way you can get that pinky to the seventh fret, your skin is tender resulting in painful calluses, holding a pick is awkward and your brain can’t figure out the up, down, up patterns.  Simply put, it is much harder than it looks.     

Learning to play the guitar at age 40

My friend April yelled at me the other day (again).  She yelled at me because she loves me.  She said something like this.  Deanne, I know you hear me but you are not listening.  You need to take time to heal yourself.  It should be your number one job, priority above and beyond everything else.  This is cancer you are dealing with, not some flu bug.  I know you want to be there for your family.  You cook, clean, home school and drive them around everywhere but at what cost?  Your life?  That’s pretty darn expensive.  It is time to let go, to lessen your load.  Your kids are growing up.  They are old enough to take on more responsibilities.  It’s better to not be available to drive them to a play date than to not be available to drive them at all. 

I get it April, you are right.  I tend to put my family before my health.  I admit it.  If my plane depressurized and the oxygen mask dropped in front of my face, my knee jerk reaction would be to put the mask on Maggie first.  I know that the so called experts say to put the oxygen mask on yourself first so that you can assist your child before passing out into oblivion, but it goes against my instinct.  I simply was not raised that way. 

Somewhere in my lifetime while growing up, I got the message that it is “ok” to sacrifice myself for everyone else.  In fact, it is not only “ok” it’s considered a good thing.  That’s what good moms do.  Of course, I would push my kids out of the way of a speeding car to save their lives even if it meant certain death for me.  What mother wouldn’t?  But sacrificing your life to save your kid from a speeding car is a little different than forgoing yoga because I have to cook dinner.  Or is it? 

Have you seen the recent study about women’s life span in America?  A report in women’s health states that, “Women in large swaths of the U.S. are dying younger than they were a generation ago, reversing nearly a century of progress in public health.” 

I will not be a part of the swath of women dying at an earlier age than our parent’s generation. I absolutely will not!

So, how does one teach an old dog a new trick?  How do I learn to balance my responsibilities, mainly taking care of my family with taking care of myself?  How do I learn to put my oxygen mask on first?  I get it in theory, but how do I apply it?

Well, in Deanne style, I have a crazy ass plan. 

I plan to embark on a whirlwind tour around the country with my daughter in the fall, a “road trip” to recovery if you will.  I am on a mission to find new and better ways to live, physically, emotionally and spiritually.  I consider this a turning point in my life, a time to re-direct my focus and come up with a plan for my second half of life.  Like Dave Grohl sings in his song “Walk” I am learning to walk again and hope to be an inspiration or “beacon of light” (yes, this also refers to my bald head) to others that may need to do the same.  I am calling it “The Beacon of Light Tour: A Road Trip to Recovery.”

Do you know that I get anywhere between 800 and 1,500 views a month on this blog from friends, family and strangers from all over the world, including over 30 states and 25 countries?  People from England, India, Russia, Germany and Israel read my blog on a regular basis.  During my tour, I hope to visit many of you, my dear readers.  This is my way of thanking you for your kind words and support.  Even if you have stayed quiet, knowing you are out there following my journey is enough to keep me writing.  

And the best part about this tour, I plan to take all of you with me on my road trip to recovery.  Since we can’t all fit in my car, I will blog about my adventures, including all the new things that I have learned along the way, the people that I meet and the wisdom I gain.  It seems pretty silly to keep all that knowledge and wisdom to myself.  

So, how does one avoid slipping back into business as usual?  How does one stop the insanity of doing the same thing over and over again expecting different results?

We change our course, one step at a time. 

We create our own road, one mile at a time. 

First stop, Arizona!

See you on the road!

You Know You Have Chemo Brain When…

Saturday, June 18th, 2011

You know you have “chemo brain” when…

– You can’t find your phone to send a text and realize you are talking on it.

– You can’t remember if you took your pre-chemo pill a minute after you took it, or think you took it.

– Your daughter tells you it’s a green light, “go mom”, she says as she rolls her eyes at you at every intersection.

– You forget to turn off the burner and find yourself scrubbing yet another burnt pan.

– You forget the lyrics to a song you wrote.

– You can’t decide between kale salad and lentil salad so you eat a waffle.

– You forget to put sunscreen on your bald head.

– You go upstairs to grab something and you come down empty handed because you forgot why you went upstairs in the first place.

– You put the ice cream in the refrigerator.  Oh, wait, that was you, mom! Or was it?

“Chemo brain” or “chemo fog” as some people call it, originally thought to be a myth, made up by weary, pooped out, anxious cancer patients is not just an excuse for the dumb things we already do.  It is for real.

You can take it from me or a new Japanese study.  According to the study, “cancer patients who are treated with both surgery and chemotherapy may suffer from brain shrinkage that can affect memory and cognition.  Researchers found that the patients whose scans had been taken a year after surgery had smaller gray and white brain matter in areas of the brain that are involved in cognition and memory — the prefrontal, parahippocampal, cingulated gyrus and precuneus regions — compared to the control patients who had never undergone chemotherapy.”

The good news:  It is reversible. 

The bad news:  It takes up to three years for the effect of chemo on our brain structure to reverse itself.

The good news:  It is reversible.  

Unfortunately, there are some chemo side effects like peripheral neuropathy that are not reversible.  Chemo induced neuropathy symptoms include:

– Numbness, tingling (feeling of pins and needles) and burning of hands and/or feet

 – Numbness around mouth

 – Constipation

– Loss of sensation of touch

– Loss of positional sense (knowing where a body part is without looking at it) – If I got a dollar for every time I bumped my head these days I would be rich.

– Weakness and leg cramping

– Difficulty picking things up or buttoning clothes

The bad news:  I am experiencing every one of these blasted symptoms.  It seems to be worse right now than ever.  And to top it off, I am going to have to go buy my first f$%@ pack of Depends.  Yes, incontinence has plagued me these last 24 hours.  Just shoot me.

The good news:  Because the detrimental side effects of neuropathy outweigh the benefits of a 6th chemo treatment, my oncologist recommends that I do not go ahead with my last round of chemo.  In other words, I am done with chemo.  Yay! Woohoo!  Yippee!

It has been a grueling few months and I am so glad to be over it.  But, not so fast Deanne.  You are not done yet.  Besides chemo brain, neuropathy, and Depends, my immune system is shot which resulted in a horrible case of food poisoning that hit me hard after taking Riley out to dinner for his 18th birthday this week.  Not to mention, I have two more surgeries ahead of me, seven more months of Herceptin and five years of Tamoxifin (which I am not yet sold on this concept).  All of this just to kick some cancer ass.  Wow, Cancer is one tough Mother F%@#$.

The bad news:  It is a long road to recovery. 

The Good news:  There is a road to recovery and I am on it.

The road is difficult.  I admit it.  It is like driving on a curvy two lane highway up in the mountains in the middle of winter on a cold icy road in super dense fog in the dark of the night and all you can see is the hood of your car.  But I know if I keep my eyes on the road, hold on tight to the wheel, and maintain my momentum, the fog will lift, the sun will rise and I will see the light. 

Kevin’s boss, Julia, sent me a card attached to a gorgeous bouquet of flowers yesterday.  She said, “It is time to celebrate!” You are absolutely right Julia, it is time to celebrate.  Fog or no fog, every day I am alive is a celebration.

My Big Bang Theory

Sunday, June 5th, 2011

Worlds Colliding!

It’s the friends you can call up at 4:00 am that matter….Marlene Dietrich

I haven’t been on Facebook for over a week.  My E-mail inbox is overflowing.  I am a week late with my blog.  I missed my son’s band, Mother Function, perform at OCHELLA.  I thought I had a blood clot.  Food taste like cardboard and I can’t seem to be vertical for more than five minutes.  To sum it all up, “I feel like poo.” 

Yes, poo.  These are not my words.  These are the candid words of Sheila Joyner, an adorable petite fiery red head from Louisiana I met last week while touring around Laguna Beach with my Phoenician girlfriends.  My bald head, acting again as a beacon of light, caught Sheila’s attention.  She offered to take a picture of us.  Five giddy girlfriends, the sun shining, a breeze gently blowing, and the big blue ocean acting as a canvas for new opportunity.  It was a picture perfect day. 

Laguna Beach - picture taken by Sheila

Main Beach in Laguna

After disrupting the flow on the sidewalk taking more than a few pictures, Sheila shared her story of how she overcame incredible odds, kicking both lung and breast cancer in the ass only to come back and beat and defeat two cardiac arrests so she could be around to see her now pre-med daughter give the commencement speech as valedictorian of her high school.  Her fiery personality matched with the most captivating sweet southern accent and an incredible will to live stole my heart. 

Meeting Sheila helped me stay strong this week while chemo tried to bring me down. 

She was not my only source of strength this week.  My girlfriends came to my rescue as well and I was able to start this week with a bang.  I am one of those lucky girls that have lots of friends, truly genuine friends.  You know the kind.  They know everything about you, I mean everything, and still love you.  As Elbert Hubbard, writer, philosopher and artists says, “A friend is one that knows you and loves you just the same!”

My friends have taken such care to make sure that I am not running on empty while fighting this battle.  They send me cards, gifts, sweet texts, flowers, dinner, facebook messages and love on a daily basis.  Sara, Stacy, Julie and Cathy decided to kick it up a notch and fly over from Phoenix to spend Memorial Day Weekend with me.  I have known these women since I was a little girl.  We have been through so much together, many drunken nights, heartbreaks, girl’s weekends, weddings, babies, moves, job changes, death, divorce and now cancer.

I picked up my girlfriends at the airport on Saturday morning.  We then spent the entire weekend with a Dave Matthews attitude, “Eat, drink and be merry, for tomorrow we die.”  I know it’s a bit morbid under the circumstances but it is true nonetheless.  Bloody Mary’s at brunch, carousing cute boutiques, strolls on the beach, covert conversations, a sidesplitting afternoon chick flick that has me scared for life, happy hour at the harbor and the grand finale, a Daisy Chain performance. 

Mimosas in San Juan Capistrano

A Tour of San Juan Capistrano Mission

Happy Hour at Dana Point Harbor

Dana Point Harbor

This was the highlight of my weekend, a private concert at my home with my best friends. 

Daisy Chain w/ special guest Riley

Sara, Stacy, Julie and Cathy meet Raundi, Isis, Debi, and Amy.  (Diana and Michelle were sorely missed.)  This was the moment my two worlds collided.  Phoenix girls meet Cali girls.  Past meets present.  It doesn’t get more awesome than this, a perfect collision.  Hugs, laughter, dancing, and singing filled my home and my heart.  Honestly, the energy created by these women coming together could fuel the Hadron Supercollider in Switzerland.  I’m certain a new universe was created.   A Re-enactment of the Big Bang!  Expanding.  Reaching.  Creating. 

This got me to thinking.  What is the Big Bang exactly?  It may seem that I am off on a strange tangent right now but when you are sick in bed for days at a time you have a lot of time to think.  So here I go, please bear with me.

Our universe is thought to have begun as an infinitesimally small, infinitely hot, infinitely dense, something – a singularity around 13.7 billion years ago. Singularities are zones which defy our current understanding of physics. They are thought to exist at the core of “black holes.” Where did it come from? We don’t know. Why did it appear? We don’t know.

After its initial appearance, it apparently inflated (the “Big Bang”), expanded and cooled, going from very, very small and very, very hot, to the size and temperature of our current universe. It continues to expand and cool to this day and we are inside of it: incredible creatures living on a unique planet, circling a beautiful star clustered together with several hundred billion other stars in a galaxy soaring through the cosmos, all of which is inside of an expanding universe that began as an infinitesimal singularity which appeared out of nowhere for reasons unknown. 

For some reason this wondrous explanation of the beginning of our universe blows me away.  It is difficult to wrap my brain around, but I see a beautiful analogy.  Friends like singularities defy our understanding.  It just is, like love.  That is what friends do for me.  That is what love does for me.  This infinitely hot, infinitely dense something is the foundation in which we build our lives, grow, reach, expand, and create.  Without friends, without love, we cool, contract.  With friends, with love, we grow, expand.  Life is growth.  When you stop growing you stop living.     

Ok, I’m done.  I have a tendency of driving my kids crazy with my theories.  What some people call common sense, I like to take to another level, and over analyze it to death. 

But, in spite of my ability to complicate the simple, my friends still love me and I love my friends.  They feed my soul, give me energy and help me stay strong in times like these.  They have been with me through thick and thin and they continue to stick with me as I cool and expand, take a step forward and take a step back.  As Oprah said, “Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.”  This week was not easy for me but it would have been a lot more difficult if it had not started with a bang.  Simply stated, it doesn’t take a super collider to create this energy.  It just takes super friends, new and old! 

By the way, Sara said she feels like she hit the big time if someone mentions her by name in a blog.  So, here you go!  Sara!  Sara!  Sara!  Sara!  Sara!  Sara!  Sara! It is the least I can do after everything you have done for me.

A Feast at The Cottage in Laguna Beach

My girls re-meet Riley

Hanging at the hotel

Julie and Sara front of my home

Bloody Mary's at The Fisherman in San Clemente