Archive for March, 2011

Quit Making Cancer Look Like So Much Fun!

Saturday, March 26th, 2011

Yesterday was another big day for me in my cancer adventures.  I shaved my head.  After months of fretting, trepidation and crazy ass speculation of what I would look like bald, I finally did it.  It wasn’t easy.   I was scared shitless as I slipped into my “Fuck Cancer” shirt, jumped into my car and drove to the Newport Beach Hair Loss Center. 

Nazy, the owner, is a breast cancer survivor.  A Glass of wine was waiting for me as she took me into a comfy but elegant back room to shave my head and cut and style my new special customized wig. 

I like to think that I am not vain, but being bald was never one of my first choices for a hairstyle.  I have to say however, I really love my hair, or lack thereof.  Who would have known?  I actually have a nice head.  Move over Sinead and Demi!  

Not only do I love my bald head, it makes me feel strong and empowered.  I watched too many movies in the past that showed people sick with cancer, bald heads, and hanging over a toilet.  I honestly have had a difficult time getting that horrible vision out of my head.  Not anymore.  First, those were the old days when chemo treatments were brutal and Paleolithic.  Second, that is not me.  Remember, “The thing you push against is the thing that lifts you up.” 

And, as usual, much of my strength comes from all of you.  My friends came to my aid, yet again.  I sent a picture of my bad ass haircut via text to many of you and here are some of the incredible responses I received from you guys: 

“You are so FUCKING AWESOME!!! I have never loved you more than I do at this Moment.  You are beyond beautiful”…..  Jules

 “Kisses to you brave beautiful goddess”…..Isis

“U Rock!  Keep your shoulders back, chin high and that beautiful smile bright”…..Stacy

“If anyone can pull it off, you can”…..Stephanie

 “U R Gorgeous”…..Shell Bell

 “Hugs to you girl”…..Diana

“U rawk Deanne!  OWN it”…..Drew (Diana’s brother who is battling cancer himself – U rawk to Drew!)

“You’re beautiful”…..Amy

“Aw! Awesome! Damn, you still look hot!…..Tina

“You look darn good girl!!!  Your head is perfect for that.  Now, mine on the other hand”…..Orit

“What a hottie!”…..Sara

“Wiiiiiiiild —- Woohoo!”…..Cyndi

“U look hardcore”…..Riley 

“After all of this I think you are going to be fearless!”…..Raundi

Yes, thanks to all of you I do feel like I am a fucking awesome, gorgeous, hot, hardcore, brave beautiful goddess with my chin held high and a smile beautiful and bright.  And, Raundi, you are so right, fearless seems reachable, most notably, fearless of the unknown. 

I have learned two incredible lessons this week.  First, I must have faith.  As Patrick Overtone, poet and playwrite says, “When you have come to the edge of all light that you know and are about to drop off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught to fly.”  Thank you Patrick.  You are right on!  The anxiety and fear of the unknown can be debilitating but as I get further and deeper into my battle with cancer, I feel the ground beneath my feet and the sky above ready for me to take flight. 

Second, make the unknown known.  You can guess, speculate, presume, hypothesize, fantasize and imagine till kingdom come, but nothing is more empowering, commanding real and fun than actually doing it.  If you are afraid to do something, it’s even more reason to do it!  As Ogden Nash says, “No, you never get any fun out of the things you haven’t done.” 

Raundi came by last night to pick up her son, Harrison, and her dishes, after dropping off the most amazing lasagna dinner for our family.  As we chatted and laughed about my adventures today, showing off my bald head and stunning wig, she said to me, “Deanne, quit making cancer look like so much fun!”  Thank you girl, it is comments like that and friends like you that help me make it fun.

 

If you or someone you love needs a fabulous wig check out Nazy’s website:  http://www.hairforhairloss.com/

“Take Off” the Sweat Pants

Sunday, March 20th, 2011

Sleep is a big tease these days.  I fantasize about it but can’t quite get it in my grasp.  Watching late night television at the time only vampires and security guards are awake, I was thinking about a woman’s post I read on a breast cancer forum recently.  She said that the most she expected of herself each day during her chemo treatment is to take a shower, get into her sweats, curl up on the couch and watch “Desperate Housewives”.  She considered that a good day. 

The Desperate Housewives are not wearing Sweats!

As I was channel surfing, thinking about this woman and vowing not to end up on the couch all day every day during my chemo treatment (but secretly worrying this could happen to me), a Delta Airlines Commercial caught my attention.  I was captivated by the voice and tone of the narrator, as if he were personally talking to me.  The commercial shows a plane taking off from the runway, as an entrancing voice says, “The thing you push against is the thing that lifts you up.”  Wow!  I thought to myself as I ran to find my notebook and pen frantically writing it down before my chemo brain absorbed it into oblivion.  Not only is it a simple law of physics based on Newton’s laws of motion, there is such truth and humanness in this simple but profound statement, I knew at that moment I had been transformed yet again.  The Universe is now reaching out to me through a Delta Airlines commercial.   

What brilliant marketing, “The thing you push against is the thing that lifts you up.”  In the case of an airplane wing, the wing exerts a downward force on the air and the air exerts an upward force on the wing.  You have take-off.  In the case of my battle with cancer and my current chemo treatment, my body exerts a downward force on my mind and spirit and my mind and spirit exert an upward force on my body.  You have healing.

There is an incredible mind body connection that we are just beginning to understand.  Our thoughts and feelings can positively or negatively influence our bodies.  As Lawrencw LeShan, Ph.D. and father of mind-body therapy states, “Feelings affect body chemistry (which affects the development or regression of a tumor), just as body chemistry affects feelings.”  We all know that when we are stressed or anxious about something, we experience physical symptoms such as muscles tightening, upset stomach, headaches, sleeplessness, back pain, pain in chest, shortness of breath, pounding or racing heart, and sweaty palms.  Every one of us has experienced most of these symptoms at one time or another.  This stress will eventually wear our immune system down and we will get sick.  Research shows that when one is diagnosed with an illness, it is important to minimize these negative effects so that the healthy, healing aspects of our mind-body connections are maximized. 

How do I minimize negative effects while faced with cancer and undergoing chemo treatment?  By not choosing to watch T.V. all day in my sweats like the woman in the forum!  I know myself and I would definitely slip into a state of depression as I slipped into my sweats.  Depression sucks all the energy, optimism and joy out of life.  Visiting the dismal swamplands of sadness and despair does not seem like the best way to kick cancer’s ass.  And of course, studies show that I am right.  Tumors shrink, cancer’s go into remission if not cured and a patient’s life prolonged when one has a positive optimistic outlook on life. 

I admit chemo has not been easy so far.  Hours spent at the doctor’s office attached to an IV, sore tingly legs and feet, a cloud like feeling in my brain, debilitating  fatigue, fever, chills, muscle and bone pain, no appetite, horrible mouth sores, a disgusting metallic taste in my mouth, and extra saliva that makes me want to carry a spittoon with me at all times.  There have literally been moments when I had only enough strength for my legs to carry me up the stairs and into bed.  Symptoms vary from day to day.  And, as I get further into the process, symptoms will intensify due to the cumulative effects of the drugs.  Knowing all of this is very trying.  My newest challenge this weekend is watching my hair begin to fall out in clumps.  It’s in my brush, in the kitchen and bathroom sinks, on my clothes, on my man and pillow, you name it, traces of my DNA are everywhere.  How does one not give up and slip into her sweats?    

I get angry.  When depression, lack of energy and pessimism begin to push hard, I push back.  Anger you might ask?  Here is a quote from a letter written by Maestro Lorenzo Sassoli, a physician to a patient in 1402:

….let me speak to you regarding things of which you must most beware.  To get angry and shout at times pleases me, for this will keep up your normal heat; but what displeases me is your being grieved and taking matters to heart.  For it is this, as the whole of physics teaches, which destroys our body more than any other cause.

Yes, there are many reasons to be angry about cancer and let’s face it life in general.  And, since depression is anger turned inwards, it seems logical to assume that to avoid depression it might be a good idea to turn that anger outward.  Of course, it needs to be kept in check and does not mean letting anger run amuck.  No plans of going postal.  Instead, I have found that anger coupled with a splash of frustration and flavored with a bit of optimism can be an incredible positive driving force, just the push I need to help me get back on my feet, face my problems head on and keep me going in the face of pain, exhaustion and hair loss.  This is when I take-off, where I have lift-off, and I am certain when healing occurs. 

Debi, guitarist, up front and center

Yesterday, I mustered enough energy for band practice with Daisy Chain.  During practice, I lost a big clump of my hair, the biggest so far.  Thank goodness my girlfriends were with me at the time.  My friend Debi suggested I take my hair outside and donate it to the birds to build their nests.  Birds build the most beautiful intricate nests with all types of materials including human hair.  Debi’s idea was just what the doctor ordered.  It brought tears to my eyes and felt so right.  What a perfectly creative approach to help me cope with my hair loss, turn a negative into a positive and stay on the road to healing.

Every day, whether I feel like it or not, I put on my sexy jeans, a cute top, make-up and heels (ok sometimes my comfy Ugg boots) and go back to work, business as usual.  Morning walks, carpool, shopping and an occasional band practice fill my days.  Yes, I feel yucky, tired, sore, and sometimes I simply have to find a place to sit down or lie down for a minute to catch my breath, but I refuse to stay in my sweats and get stuck in the swamplands.  When my body pushes, I push back.  Learning to convert my anger and frustration into positive energy gives me just the push I need to help lift my body, mind and spirit from the dismal swamplands of despair to the clear open blue skies.  On the way to school the other day, Maggie said to me, “Mom, sometimes I forget you have breast cancer, life seems normal.”  Then she added, “Well, normal for the Browns.”  I have take-off!

Play by Play

Wednesday, March 9th, 2011

If you have been following my blog then you know that I had my first chemo treatment yesterday.  Somehow, the day I feared most in my battle against cancer was not as scary as I imagined.  Honestly, I’m not surprised.  It seems that nothing is as scary as you think it is going to be.  As I live through many difficulties in this strange and wondrous life, I have come to believe that putting time and energy into worry wastes too much time and energy.  As Mark Twain brilliantly held, “I am an old man and have known a great many troubles, but most of them never happened.”

Below is a play by play of my first treatment from start to finish. 

 9:00 am 

My mom drove me to my appointment.  We arrived fashionably late.  Walking through the doors of my oncologist, I felt strong and positive.  In my left hand was my courage stone, my right hand my cell phone, walking by my side was my mom and in my heart all of you.

9:15 am

Dr. Stebel took my vitals and prepped me.  Sitting in an overstuffed recliner, she began to prepare my port.  As she pulled back my shirt, I tried to help.  Dr. Stebel quickly with a gentle force said, “Deanne, relax, sit back and do absolutely nothing.  Let me do all the work.”  Does she know who she is talking to?  That’s like telling a pilot who loves to fly to switch to co-pilot or telling Grandma she does not need to go to the trouble to bake her homemade apple pie, we are going to pick it up at Costco.  As you may have learned by now from reading my blog, it’s a bit difficult for me to let go.

She cleaned the area thoroughly and spread a numbing cream, Ladacain, on my port.  Since I have become so thin these days, the port protrudes under my skin, slightly resembling a huge cyst, disgusting.  At least she used some cute little pink “I Love Kitty” band aids when she was done which made me smile.  I felt like a little girl, when my mom would take care of my “owies”.

She told me to sit back and rest and she will be back in a few minutes.

 

9:30 am

Dr. Stebel returned and said, “Deanne, I want you to close your eyes and imagine being in your favorite place and tell me about it.”  I began telling her about the ocean, its blue waters and salty smell and then in mid-sentence I switched gears.  I found myself on stage singing with my band.  Not a bad place to be as she inserted the needle into my port.  Ouch!

She attached me to Bag #1, anti-nausea medicine. 

 

9:45 am

Fifteen minutes later, Dr, Stebel attached the second bag, taxotere to my IV as the chemo, poison, medicine, or liquid love as my friend Michelle told me to imagine it dripped slowly through the tubes into my veins.  At that moment, all I could think of was the chemo seeping slowly into my veins, mixing with my blood, killing every cell it touches, both healthy and cancerous.  Chemo does not care.  It does not decipher or delineate between bad and good.  Like Sherman’s March at the end of the Civil War, destroying, killing, and pillaging every living thing in its path until they reached the sea.

I look forward to the day I reach the sea.

 

10:35 am

By this point in time, I feel nothing.  No difference.  No symptoms.  Not yet anyway.

My mom and I are chatting about motherhood, my childhood, marriage and life.  It’s nice to have time like this with her.  One of my bestest girlfriends from Phoenix, Stacy, less than 24 hours earlier, lost her mother to breast cancer.  These are moments to cherish because things could change in a blink of an eye.  My heart goes out to you and your family Stacy.

Stacy is the hot cougar on the far left!

The room is nice and cozy, carpeted, a television and blankets to keep me warm.  I will be spending a lot of time in this room.  Chemo is administered every three weeks for the next six months followed by a shot of Neulastra the next day to increase my white blood cell count.  Herceptin is administered every single week for the next six months then down to every three weeks for an additional 6 months.  Herceptin is a biological.  It stops the signal from the Her 2/neu receptors so that the cancer cells will stop multiplying and spreading like wild flowers.  Her 2/ neu tends to metastasize to the lungs, bones and brain.

Today’s first session is supposed to take five hours.  Dr. Stebel said, “you are 1/6 of the way there.”  Nice way to look at it but I have learned that when a doctor tells you that it will be a little sore for a few days, he is really saying, “It’s going to hurt like hell for the next week or two or three.” 

 

11:03 am

I have to pee.  Not an easy feat, when attached to an IV thing-a-ma-jig.

At this point in time, Dr. Stebel came to check on me and we had a very interesting conversation.  She believes that she has the highest breast cancer survival rate in the country due to her very “zen” like treatment process.  She does everything herself, from mixing the chemo to administering it to the patient. She is very personable and makes you feel quite safe.  She has no official statistics, but it would be nice to do an in-depth study on this.  I think I found the right place for me.

 

11:30 am

Dr. Stebel is now hooking me up to Bag #3, Carboplatinum, a second chemo used in conjunction with Taxotere. 

I have the room to myself, no chemo partners thus far.  But I actually look forward to the day of meeting other women like me.

Just checked my Facebook.  Yes, Raundi, it is cocktail time.  Thank you for all your loving words guys.  It means everything to me. 

Now I am signing, “Always Look on the Bright Side of Life”.  Wish I could whistle.

12:00 pm

Finally pee’d.

12:15 pm

I got my wish.  I have a roommate.  Her name is Tulare.  She was first diagnosed with breast cancer in 1997 at age 42.  She went through chemo and a mastectomy but unfortunately it came back with a vengeance a few years later and had metastasized into her lungs, bones and now brain.  As she told me her story, a fear began to creep into my veins along with the chemo, until I learned more details.  Apparently, she had tried to heal herself with alternative medicine, juicing, raw foods, and coffee enemas, similar to the Gerson Therapy.  Within one year, her tumor grew exponentially finally reaching 6 centimeters and spread to her lymph nodes.  At that point she decided to have chemo and a mastectomy.  She wished she had not waited so long for chemo but I told her, “hindsight is 20/20”.  Honestly, Tulare was so sweet, open and a breath of fresh air.  She had no hair, no eyelashes and no eyebrows but a glowing smile and wonderful spirit.  I found her to be absolutely beautiful and a godsend, sent to me by the universe to solidify my decision.

12:45 pm

Bag #4 is now being hooked up to my IV.  This is the last bag for today, full of Herceptin.  It will take an hour and a half for the bag to empty into my veins.  An entire year to do it’s magic.

I had another interesting conversation with my doctor and roommate at this point about the money going into cancer research.  The discussion led to the all-mighty FDA, Food and Drug Administration.  Do you know that it is illegal to claim that you can cure cancer, especially if you are not a doctor?  You can be arrested and imprisoned.  The Gerson Institute claims to have cured many cancer patients, but they are forced to operate on the other side of the border, in Mexico.  Other facilities like this are not given any extra monies or grants for research, unless big bucks are promised.  Some even go as far to say that the FDA is in cahoots with the big pharmaceutical companies, keeping any cure at bay.  A cure would wipe out an entire industry.  It’s hard to believe that people can be so cruel all for the almighty dollar. 

1:58 pm

Almost done!  Quietly resting.  Getting a bit tired.  A chance to think, ponder and process this entire experience, another “Yes Mom” adventure.  I still have my courage stone in my left hand, my phone in my right, my mom by my side and all of you in my heart. 

 

2:11 pm

I feel foggy.  Maybe this is what they mean by Chemo brain.  Dr. Stebel is now removing the last bag and flushing my port with a saline solution and Heprin to protect me from blood clots.  As she extracts the IV from my port, the most painful part of the procedure so far, I wince, sit back and catch my breath. 

I’m done. 

Only 57 more treatments to go.

Courage is resistance to fear, mastery of fear, not absence of fear….Mark Twain

 

Today I had my shot of Neulasta.  Dr. Stebel told me I will crash in the next couple days.  So, I plan to fill my soul first with friends and music and scheduled band practice for tomorrow afternoon to soften my landing.

More pictures to follow if I can figure out how to upload them from my phone.

Always Look on the Bright Side of Life

Monday, March 7th, 2011

This is the wig I chose!

There once was a woman who woke up one morning, looked in the mirror,
and noticed she had only three hairs on her head.
‘Well,’ she said, ‘I think I’ll braid my hair today.’ 
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror
and saw that she had only two hairs on her head.
‘H-M-M,’ she said, ‘I think I’ll part my hair down the middle today.’ 
So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed
that she had only one hair on her head.
‘Well,’ she said, ‘today I’m going to wear my hair in a pony tail.’ 
So she did, and she had a fun, fun day.

The next day she woke up, looked in the mirror and
noticed that there wasn’t a single hair on her head. 
‘YAY!’ she exclaimed. ‘I don’t have to fix my hair today!’

Attitude is everything.  

I took this attitude with me a few days ago when I went shopping for a cranial prosthetic, an official term used by the insurance companies for a wig.  I carried this attitude with me again on Friday when I had outpatient surgery to have a portacath surgically implanted in my chest.  And again this Saturday when water was pouring from my walls in the dining room from a main pipe leak.  There will always be trying times in our life, some harder than others but the secret is a good attitude, always seeing the bright side of life. 

Even when things don’t seem so bright, like the risks involved in surgically implanting the portacath, I was somehow able to laugh and make others laugh.  The port is used to administer the chemo.  As the doctors operated only centimeters from my heart, punching a hole in my jugular to insert the catheter, with the risk of heart failure, lungs collapsing, possible rejection of a foreign object and infection, I woke up and began chatting with the doctors during the procedure.  I remember my nurse, Alex, mentioning that his favorite band was Placebo.  I perked up and stopped snoring for a minute to yell out “Meds”.  The doctor thought I needed more medication but I was trying to tell them that “Meds” is my favorite Placebo song.  All of the nurses and doctor’s cracked up.  Once calm was restored, the doctor told Alex to give me some more meds.  Guess I was a bit too awake for their liking or they just wanted to shut me up.  Either way, finding humor in the absurd, the good in the bad, and meaning in the ridiculousness, keeps me smiling when I should be crying and sane when things are insane. 

Losing my hair is insane and makes me want to cry.  It is a side effect of chemo that most women fear.  My doctor told me that my hair will fall out after the second chemo session.  I have decided to shave it first, before painfully watching my hair fall out in clumps.  I don’t want to shave my hair.  I love my hair.  It’s soft, sexy, and feminine.  And, like my breast it makes boys stop in their tracks.  I love to twirl my hair around my finger, brush it, bounce it and flirt with it.  And when my man runs his fingers through the long silky strands, I feel loved and safe.  Short, long, thin, thick, curly, straight, red, blonde or brunette, hair makes a statement like flappers and bobbed hair, hippies and long hair, Rastafarians and dreadlocks, punkers and Mohawks, skinheads and shaved heads, rednecks and mullets, breast cancer and wigs.

Yes, wigs!  I went shopping for a wig with my friends Raundi and Isis last week.  I needed a second and third opinion.  Purchasing a cranial prosthetic is not the same as going to get a haircut.  If it’s a bad cut, it will not grow back.  The wig I decided to purchase is made of human hair.  The cost is exorbitant, more than most people’s monthly mortgage.  It is strange to me that I will be wearing another woman’s hair, and it is ironic that I will be shaving my head and donating my hair for someone else to wear.  The whole idea is very surreal and a bit weird.  But, I can go through the wig shopping experience kicking and screaming or I can take a deep breath and make a day of it which is exactly what I did.  Raundi took pictures while I had fun trying on lots of different wigs, seeing myself in a different light, in new skin if you will.  So don’t be surprised if I show up at your door someday as a blonde.  Could be a lot of fun.  My mom used to wear wigs back in the day and she told me that a few people thought my dad had a girlfriend. 

 

It’s just hair, or is it?  Doesn’t matter, what truly matters is my attitude about it.  So I am learning to take things in stride, accept the weirdness and make the best of a situation.  For example, did you know that the plastic surgeon used a piece of cadaver skin on the reconstruction of my breast?  Yes, cadaver skin!   A piece of skin from a perfectly dead stranger has been implanted in my breast.  They used to use pig skin a few years back so I guess I should be grateful.  I typically would spend hours trying to learn everything I could about cadaver skin, pig skin, etc, but I have since learned that there is no point in wasting energy trying to comprehend every little detail.  I am learning to accept the fact that some things are just simply bizarre and I will leave it to the experts, let it go and simply be grateful, a huge colossal lesson for me.   

Honestly, I find that I am truly grateful for the person that donated her skin for my breast, appreciative of the technology we have for a portacath, thankful that there is a treatment for breast cancer and indebted to the men and women that gave up their hair for me.  These are all gifts from caring and dedicated people that will increase both the longevity and the quality of my life and give me some sense of normalcy in these crazy times. 

And, I will no longer have to spend time washing, blow drying and curling my hair every day.  No more shaving or waxing or plucking either.  No more pesky chin hairs.  No more razor burn.  See, there is always a bright side to everything.  Attitude!  Attitude!  Attitude!  For you Monty Python fans, remember the last scene in “The Life of Brian”?  The guys were nailed to a cross, vultures hungrily standing by waiting for them to die as they were happily singing a little ditty, “Always look on the bright side of life”.  If you haven’t seen it rent it today.  It will make you laugh, lift your spirits, and help you to find the humor in the absurd.  I would not want to go through life any other way. 

I will leave you all with the Serenity Prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference

 

Tomorrow at 9:00 am, my first dose of chemo will be administered.  I plan to be singing!

Thank you Aunt Marilyn, for sharing the “Attitude” story with me.