Here is a list of songs of inspiration that I used during recovery, by Melissa Etheridge
from her album Lucky. She wrote it when she was battling breast cancer. Her music over
the past 15 years has been there somehow through every heartbreak and difficult time with
music that has expressed my pain and hope in ways that I only hoped too. I bought the album
Lucky a few weeks prior to surgery, knowing that there would be music in there that would
understand my pain, sadness and eventually hope and light.
Melissa Etheridge - Lucky
This Moment
Breathe
Mercy
Meet Me In The Dark

Disclaimer: Due to the some graphic language and images, we recommend that anyone under the age of 18 view the contents of this page with an adult present.

11/16/2008

You have to realize that when you are fighting disease, you are not at war with your body. You are working with your body. The human body will strive towards homeostasis, a return to balance allowing for healing. You must give it the tools to do so.

I always turn back to Yoga when I need to heal, this time it’s from the triathlon season. 13 months off of surgery and I’ve been able to reach full strength and then some. It feels good to feel good. I still steri-strip my right eyelid closed at night and my blinker wears out before the rest of my body does. But I’ve taken this signal as it’s time for rest.

Sleep is a priority.

Exercise is a priority.

Eating right is a priority.

Make yourself the priority.

Make yourself the priority and you become abundant in what you are able to give to yourself and others. To truly fight a disease you must do just that. Find what moves you and gives you strength. Maybe it’s your spirit, maybe it’s your sport, maybe it’s both.

Being an athlete is not just about race day. I’ve been humbled by athletes around me that taught me the valuable lesson that the true measure of yourself is in the commitment. Your commitment to train, your commitment to finish and the ultimate commitment to yourself to persevere. That is what inspires me. That is what we love to embrace in the athlete.

Friday, January 25, 2008

7:02 p.m. The Compass

There are moments in our life that define us, become our trajectory.

A compass to guide us, and if we are lucky,

travel the path of our destiny.

It is our parents that set us free into the wildness of the world giving tools to build our character with.

May we be blessed enough to see this before it is a reflection of their life.

These are acts of courage and the meaning of unconditional love.

For love from all others except our parents is very conditional.

It was my great fortune to be born of my mother.

She, at the time was without her compass.

She raised me to have confidence.

Not illusions of, but through struggle and the ability to get back up when I had fallen.

She gave me strength.

She gave me wisdom.

She taught me to believe in myself,

this in the end is really the only compass that children need.

Feb. 19, 2008 8:35am

Kryptonite I've been up now for about an hour and just pulled the steri strips off of my eyelid. Still taping the bling in place at night and after sleeping this way my skin itches so badly that I want to claw my eyes out. The only thing that would feel good is to rub them vigorously, which is also the most dangerous thing I could do. I clench my hands near my face and scream. I still feel fragile as if one movement would pull the platinum through my skin. How is it possible to feel like a superhero one minute and like shattering glass the next? Kryptonite.

Life comes in waves. Lately I've had the fortune to meet lovely souls of the spoken workd. 3 interviews in 2 weeks.
All the people that I've sat with have been groovy and peaceful sort of folks. They carry tiny electronic tricks, recording devices that make the interview just conversation. This format is comfortable and natural for me. D. J. was the first to interview me with this device in a coffee shop in Ybor. We named her Pearl and I would secretly speak into her while D.J. got coffee. It looks like a star trek transporting device. Barbee and I sat on concrete steps during a Roller Derby match. She in overalls, myself in pigtails, this unplanned interview took place. This returns me to the theory that sitting on the floor with someone brings out their true nature, silliness and confort. It's intimate. I no longer trust people that want to interview me while standing. Note to self....do all interviews sitting Indian style or in coffee shops, never trust a standing talking head with a phalic looking recording device. They are always in a rush and pretend to be genuine speaking through their fake teeth. They dart their eyes around, blink more than normal and nod too much. They practice looking attnetive. No doubt there's a maual, how to look interested or interesting when you are thinking about the latte you had with whole milk. that bastard put whole milk in my coffee, I wanted fat free,he's sabotoging me, that's another 45 mins. of spin, I'll get that minimum wage drone fired, is someone laughing at me....is there something in my teeth, I gotta pee. It's an oxymoron, pretending to be genuine.

Jan. 1, 2008 11:30am

New Years Eve- A day spent mixing dirt and flowers in new pots has pleased me. Brought comfort, quiet. I cannot talk about anything anymore, I'm losing my mind. This taking it easy crap has to go. Waiting to heal from this last surgery is making me feel old. Cartwheels would be better. The garden is soothing, a place to nuture, be nutured. Brushed off the loose dirt and headed to the Patteson's for dinner. Didn't feel like brushing my hair, didn't care. Found an old journal sleeping under an antiqued Jimmy Buffet t-shirt. It had a frog on the cover. This brought the first smile of the day as I bellyflopped onto the bed to open it. December 31, 1997 was the first entry. Holy shit Batman, 10 years to the day. Spooky. Intreging. Reflective. A ghost. Found words on marriage, relationships, the sadness of my grandfather's death, and the List for 1998. Felt certain that this was a sign, the universe pushing me once again in a direction. No time to read, headed off to dinner. As I plopped back into bed before midnight, I waited for something spectacular to happen. There's always the midst of that antipation on New Years Eve. Strange feeling, this waiting. Got up to check email, found spectacular thing. Drifted quietly but happily into the New Year.

Mon, 31 Dec 2007

When I was growing up with NF, there were no links, no support groups,
no fundraising, no awareness, no support and no answers.
Since I have found the CTF, I for the first time in my life, have not
felt alone in this struggle.
Now when a parent receives the devastating news that there child has NF
and they frantically search the internet for information, it will be there.
And along side all of the research information, doctors groups and the
disease process will be hope. Hope in the form of symposiums, current
information and inspiring stories.
Hope.

Follow the link below to see Butterfly Challenge on the CTF website.
www.ctf.org
Nf marathon team,
Inspiring Teams

I am so proud of you all.
Tonia, Robin and Kara are running in the Disney Marathon, Orlando
Sunday Jan. 13th. Sat., Jan. 12 , 4:30pm at Planet Hollywood is a
pasta dinner hosted by the Children's Tumor Foundation. If anyone
is interested in coming, pls. RSVP with me so that I can reserve
some seats. And if anyone would like to come cheer on the
sidelines for all of the NF runners, let me know and I'll get
information to you about where to go.

Happy New Year everyone!
Gasparilla's around the corner....who's coming?
Candy

Journal- 12/27/07 released

Wed, 26 Dec 2007

Thank you to everyone that has worked, trained, raced, participated, supported, cheered,
contributed and prayed for myself and every person affected by Neurofibromatosis. I am sincerely grateful.

Below is a message from Steve Kendra of the NF Marathon team, his words express how wonderful you all are.
Click here to view article.

Thank you,
Candy

Mon, 17 Dec 2007

Hey friends,
after 3 days of taping my lid shut, went to Habal's today and he DID NOT put more stitches in!
He felt like the lid was healing and ordered 10 more days of keeping the eyelid taped down and taking it easy.
Surgery today canceled,
prayers working,
thank you all,
much love,
Candy

Saturday, December 15, 2007 3:50 p.m.

When did it happen that we needed an engineering degree and a hammer to open any pre-packaged,
shrink wrapped, plastic sealed, bullet proof product of beauty or hygiene?
It was that asshole in the 70’s that poisoned the Tylenol.
It was then that we began to stumble down the double helix acting like crazed thumb-less
apes smashing light bulbs with coconuts.
I’m temped to send this mutilated package back to the manufacture with a box of
band-aids and a sweetly hand written note that states, “Go fuck yourself J”
This combination of p.m.s. and my eye bling has put me in a real fuck you mood.
I need to blow off some steam.
I’m angry, pretty fucking angry. I just want to blink. I just want to close my eyes when
I’m tired, when I’m frightened, when I’m flirting.
I just want to close my eyes.
It’s not diamonds.
It’s not Ipods or Wii’s that I dream of.
It’s not fast red things, tall blond things, or a rock star lifestyle.
It's simply, to have the ability to feel just a little bit like everyone else
and close my eyes.

Wed, 12 Dec 2007 19:32

Operation humor, prayer & love has been re-instituted.

Going in Monday (12/17) to Dr. Habal's office o.r. to have some sutures placed in my eye. Precautionary at this point, eye covered & stut again. No driving for .... a week?
So, here were the instructions given by Habal.
"Take it easy."
"No swimming, biking, running, jumping, upsideowning, stressing,crying or straining."

So...next week it will be frozen pees, wedges, comedies, baking and painting.
Send love,
I'll do the same.
Candy

A Response to the Bright Lights, Cold Steel Journal entry of Oct 31.
From: Candice Patterson
To: tom
Sent: Friday, November 09, 2007 8:02 PM
Subject: Re: Journal entry

I'm brave, very brave.....

It was a difficult decision deciding to share my journaling. I've journaled now for 20 years and
never shared my writing because I never wanted to write and think about who was reading it. It has
always been a place that I could go without judgment, criticism, and honestly just using that
part of my brain gets a lot of stuff out that needs a way out. Almost 2 years ago when this idea of
sharing my journey became a reality, I really struggled with what I wanted to share. That's why
sometimes I run something by my family and close friends and sit on it before deciding to put it on
the website. It's raw, but it's the only way for people to understand. I've received emails from
other NF patients, people going through chemo and they have found the journal helpful. My family has
found it helpful. There is still a great deal that I don't share, but someday I will, I'll smush them all
together in a book. My cousin Bree is the beneficiary of all of my journals in the event of my
death. They range from red binders, fuzzy zebra covered books, and as I complete them they are
stacked and wrapped with some leather twine and tucked away. My birthday is coming up and every year
on this day I buy a new journal. It doesn't matter to me if the old one still has lines left, it's just
a ritual that I enjoy along with a slice of pink cake.

There is so much of my life that I spend being strong, I need a place to crumble. Contrary to
popular belief I do bend and break, sometimes easily.
Above all, I am real and honest and completely embrace life, even the stuff that makes you cry.
Who was it that said, "Great love involves great risk." I can't remember, anyway, it's true.

Thank you for taking the time.
Hope you are well,
.....thinking about a bonfire soon :)

----- Original Message -----
From: tom
To: Candice Patterson
Sent: Friday, November 09, 2007 5:02 PM
Subject: Re: Journal entry

hi K-Lou,
This is so personal and deep. How do you share this? If I was the crying type, I would.
huggage,
tom

Nov. 5, 2007 8:23 a.m.

3 weeks post platinum eye bling, and I head out to the strange world of Roller Derby Boot Camp to do a medical stand-by. This was also the first time I wore eye make-up since the latest surgery and was able to match up some left over bruising with purple eye shadow. God it’s great to be a chick. How else is it that we can wear a velvet Elvis jogging suit with bling bling on the butt and rockin hot pigtails? Long day, Scotty helped with minor injuries and was the photographer of the day. Driving around now, tried to have a big night out later and work on those 7 margaritas. Had one and was in bed by 10 p.m.

It’s still hitting me that there are no more surgeries planned and I can actually think about something else. Fish and I had a fire in the back yard last night and I wanted to throw something in significant of this, a hospital band, ice pack, but there really isn’t anything I’ve found yet that hasn’t been an important part of this journey. With all NF patients everything is uncertain, how long can we stay out of the hospital? For now, I just want to take it one glorious day at a time and get my energy back. I see Dr. Habal after Thanksgiving for a check up and honestly, it will feel strange not to see him frequently. He and Laura have become woven into our lives. There is time now to finish the dental work and say good-by to the super sweet retainer. This will take a few more months, but after what we’ve been through, this will be cake!

Mon, 31 Dec 2007

Dear Butterfly Challenge, it is with pleasure that I am the first to let you know that your work, your pictures, your contributions to bringing awareness to Neurofibromatosis will be seen around the globe. When I was growing up with NF, there were no links, no support groups, no fundraising, no awareness, no support and no answers. Since I have found the CTF, I for the first time in my life, have not felt alone in this struggle. Now when a parent receives the devastating news that there child has NF and they frantically search the internet for information, it will be there. And along side all of the research information, doctors groups and the disease process will be hope. Hope in the form of symposiums, current information and inspiring stories. Hope. Follow the link below to see Butterfly Challenge on the CTF website. www.ctf.org Nf marathon team, Inspiring Teams I am so proud of you all. Tonia, Robin and Kara are running in the Disney Marathon, Orlando Sunday Jan. 13th. Sat., Jan. 12 , 4:30pm at Planet Hollywood is a pasta dinner hosted by the Children's Tumor Foundation. If anyone is interested in coming, pls. RSVP with me so that I can reserve some seats. And if anyone would like to come cheer on the sidelines for all of the NF runners, let me know and I'll get information to you about where to go. Happy New Year everyone! Gasparilla's around the corner....who's coming? Candy

Journal- 12/27/07 released

Barack Obama
Journal entry from the inside cover of The Audacity of Hope.
Written after meeting Barack Obama.

April 15, 2007

On a windy and sunny afternoon in Tampa, great people of hope & diversity gathered at the Cuban Club in Ybor City.

The goal: to hear it for myself. To hear and see Barack Obama speak. I had heard him speak previously on TV during the 2004 Democratic National Convention. His words, his eloquence, his passion, stopped me in my tracks. Since then, I’ve wanted to meet him. When he speaks I feel inspired about America and have a sense of patriotism that has sat dormant since 9-11. When he speaks I hear ghosts of Lincoln, Kennedy and Martin Luther King Jr. I pray that fate will protect this man. There is a way that harm can find a way to great leaders and people working for peace. I pray that we can hold onto this inspiration and not be frightened by a different way of working with our government. On this day, Senator Obama spoke of the “Winds of change,” and I felt it.

Filling the courtyard was a small and curious crowd of citizens ; black, white, Hispanic, tattooed, female, grey suits, pierced youth, college students, parents and myself. I stood 10-15 people deep to the left of the stage. During an impulsive move I clenched this book against my chest and squeezed up to a small barricade. It was there that Obama exited the stage. The crowd was intimate enough that people could still get close to him. To my amazement and delight, the opportunity came as he stopped for a moment and shook several hands, including mine.

With great purpose I made eye contact with Barack firmly shaking his hand and said, “Thank you Senator!” Now, I wish that we could have shared a café con leche, discussed great leaders and people that wore sandals, but it was only a short and gracious minute. He looked at me in return and said, “Thank you.”

I waited in the courtyard for almost an hour with 40 or so mingling people and watched two teenage girls steal a campaign sign. Our books had been given to aids for signing. The senator was busy inside with reporters, community leaders and photographers. In the end our names were called out in the lobby. “Candice Patterson?” I was required to show ID, and my book, now with the signature of a presidential candidate, was returned. The book was once again clutched tightly as I made my way through the crowd squeezing it like a blanket. There was a vibe of anticipation, darting eyes and paranoia. People regretted not bringing their book, or didn’t know about the book and scurried for something to have signed. With an ear to ear grin and the wind pushing against my face, I walked towards the parking garage. While I waited at the elevator, elated, a woman was on her cell phone. She had been at the Cuban Club and was telling someone about hearing Barack speak. I expected her to feel the same excitement that I did and thought we might discuss this as we waited. She said, “Damn, I didn’t get no *#*^@&@!&# signed book, I guess he thinks only white people can read!” She was staring at me, gesturing with her hands. I stood astonished with the misunderstanding and wanted to say no, no, there were no free books, we brought these books. She was in the middle of a rant, still on the phone and her language of anger seemed like a comfortable and familiar place for her. I turned away and took the stairs. Normally I would taken the time to make peace with this situation but it was insulting that she stayed on her cell phone, speaking directly and indirectly to me. I didn’t want to be robbed of this feeling. I didn’t want to give this moment away. She stood on the same stones that I did, heard the same words that I did, however clearly had walked away with a different perspective. For a fleeting moment, I thought of the real message that she missed, maybe I missed it, we’ll never know. The winds that day had whirled fresh excitement and loose flyers through Ybor City. The winds that day had brought history to my door step and literally into my hands.

We live in a country where we have the constitutional right to disagree. In fact, it’s encouraged. That’s the point. It is my hope that through these differences and discussion that our true Democracy will be celebrated. We all have something to contribute. Deep within the fabric that divides us, patiently sits the power to unite us.

Let it be so,
Let it be so.

Wed, 26 Dec 2007

Thank you to everyone that has worked, trained, raced, participated, supported, cheered,
contributed and prayed for myself and every person affected by Neurofibromatosis. I am sincerely grateful.

Below is a message from Steve Kendra of the NF Marathon team, his words express how wonderful you all are.

Click here to view article.

Thank you,

Candy

Mon, 17 Dec 2007

Hey friends,

after 3 days of taping my lid shut, went to Habal's today and he DID NOT put more stitches in!

He felt like the lid was healing and ordered 10 more days of keeping the eyelid taped down and taking it easy.

Surgery today canceled,

prayers working,

thank you all,

much love,

Candy

Saturday, December 15, 2007 3:50 p.m.

When did it happen that we needed an engineering degree and a hammer to open any pre-packaged, 
shrink wrapped, plastic sealed, bullet proof product of beauty or hygiene?
It was that asshole in the 70’s that poisoned the Tylenol. 
It was then that we began to stumble down the double helix acting like crazed thumb-less  
apes smashing light bulbs with coconuts. 
I’m temped to send this mutilated package back to the manufacture with a box of 
band-aids and a sweetly hand written note that states, “Go fuck yourself J”

This combination of p.m.s. and my eye bling has put me in a real fuck you mood.
I need to blow off some steam. 
I’m angry, pretty fucking angry. I just want to blink. I just want to close my eyes when 
I’m tired, when I’m frightened, when I’m flirting. 
I just want to close my eyes.
It’s not diamonds.
It’s not Ipods or Wii’s that I dream of. 
It’s not fast red things, tall blond things, or a rock star lifestyle. 
It's simply, to have the ability to feel just a little bit like everyone else
and close my eyes.

Wed, 12 Dec 2007 19:32

Operation humor, prayer & love has been re-instituted.

 Going in Monday (12/17) to Dr. Habal's office o.r. to have some sutures placed in my eye. Precautionary at this point, eye covered & stut again. No driving for .... a week?

So, here were the instructions given by Habal.
"Take it easy."
"No swimming, biking, running, jumping, upsideowning, stressing,crying or straining."

 So...next week it will be frozen pees, wedges, comedies, baking and painting.
 Send love, 
I'll do the same.

Candy

A Response to the Bright Lights, Cold Steel Journal entry of Oct 31.

From: Candice Patterson
To: tom
Sent: Friday, November 09, 2007 8:02 PM
Subject: Re: Journal entry

I'm brave, very brave.....

It was a difficult decision deciding to share my journaling. I've journaled now for 20 years and
never shared my writing because I never wanted to write and think about who was reading it. It has
always been a place that I could go without judgment, criticism, and honestly just using that
part of my brain gets a lot of stuff out that needs a way out. Almost 2 years ago when this idea of
sharing my journey became a reality, I really struggled with what I wanted to share. That's why
sometimes I run something by my family and close friends and sit on it before deciding to put it on
the website. It's raw, but it's the only way for people to understand. I've received emails from
other NF patients, people going through chemo and they have found the journal helpful. My family has
found it helpful. There is still a great deal that I don't share, but someday I will, I'll smush them all
together in a book. My cousin Bree is the beneficiary of all of my journals in the event of my
death. They range from red binders, fuzzy zebra covered books, and as I complete them they are
stacked and wrapped with some leather twine and tucked away. My birthday is coming up and every year
on this day I buy a new journal. It doesn't matter to me if the old one still has lines left, it's just
a ritual that I enjoy along with a slice of pink cake.

There is so much of my life that I spend being strong, I need a place to crumble. Contrary to
popular belief I do bend and break, sometimes easily.
Above all, I am real and honest and completely embrace life, even the stuff that makes you cry.
Who was it that said, "Great love involves great risk." I can't remember, anyway, it's true.

Thank you for taking the time.
Hope you are well,
.....thinking about a bonfire soon :)

  ----- Original Message ----- 
From: tom
To: Candice Patterson
Sent: Friday, November 09, 2007 5:02 PM
Subject: Re: Journal entry

hi K-Lou,
This is so personal and deep.   How do you share this?  If I was the crying type,  I would.
huggage,
tom

Nov. 5, 2007 8:23 a.m.

It’s still hitting me that there are no more surgeries planned and I can actually think about something else. Fish and I had a fire in the back yard last night and I wanted to throw something in significant of this, a hospital band, ice pack, but there really isn’t anything I’ve found yet that hasn’t been an important part of this journey. With all NF patients everything is uncertain, how long can we stay out of the hospital? For now, I just want to take it one glorious day at a time and get my energy back. I see Dr. Habal after Thanksgiving for a check up and honestly, it will feel strange not to see him frequently. He and Laura have become woven into our lives. There is time now to finish the dental work and say good-by to the super sweet retainer. This will take a few more months, but after what we’ve been through, this will be cake!

Oct. 31, 2007 6:12 pm

Bright lights, cold steel.

I can deal with almost anything except bright lights & cold steel. So much so that I get uneasy when I take a patient from the e.r. to the o.r. I hold my breath, concentrate on the patient and try not to look at the bright lights & cold steel.

Day surgery rolled me directly into the o.r. As I was being wheeled around it didn’t occur to me that we were heading there. Then I had to climb onto the table myself. This is as easy to do as crawl into a hole that someone just dug for you. My heart begins to race and I want to run. When I was six years old I jumped up on the operating table butt naked with an attempt to overtake the surgical suite. I threatened everyone present that if I had my granddaddy’s boots on that I would kick everyone in the head. They talked me down, and then fought me holding the mask over my face. Gas back then made me so sick and when I told anesthesia that I was going to throw up, he pressed the mask into my face harder. And I, with all my strength broke free from his grip and then with the accuracy of a sniper aimed and vomited directly onto that mean man….. and grinned.

That day I wanted to fight.

I saw Dr. Habal sitting to the side typing in his computer as we entered the room; all the other faces were unfamiliar. It was so terrifying to me that I tried to close my eyes and couldn’t. My right eye wouldn’t close and I could still see the bright lights and gleams of shiny sharp things, so I covered my eyes with my right hand, pointed my head down and begged for Versed. “I don’t want to see this, I don’t want to remember this, please give me the Versed.” A nurse grabbed my elbow and guided me onto the table. The last thing I remember is hearing, “Ok, it’s coming Candy.”

Later that day Alana found black marks on my palm. The tears and my hand covering my eye had smudged Dr. Habal’s landmarks that were made in pre-op.

Twenty Two months of healing from, preparing for and having surgery has just come to an end. Let’s hope it’s a long break. “Candy the patient is exiting the building.”

“ Candy the Great would like a large afro, Bad Kitty roller skates, a box of glitter and seven Margaritas!”

No more healing just to start healing again. Healing now is about moving on. Moving forward and feeling like myself again, a better self.

Alana removed the last stitch from my eyelid today, and I found that to be quite poignant. Not at the time, but now as I reflect on the day I realize the significance of this gesture. I wasn’t nervous. It happened so naturally, as if it was meant to be. Dr. Habal handed her the tools and let her remove a suture that he couldn’t see. It was so appropriate. Alana was at my side the day we found out about the tumors. Alana took me to her house were I sobbed into her blue sofa. She made me tea, held my hand and let me cry. She listened to me when I told her that Bob Marley died of a brain tumor. For some reason, that made things more bearable. She was with me as we left Cirque and I told her of my fears going into the surgeries, how straining it would be on everyone. She said to me, “There is nothing that you could ever ask of me that would be too much.” I knew then that our friendship was something that I could never live without. She was with me when I couldn’t breathe and honestly thought that I would die. She held my hand and slept on the hospital floor when I would drift off so frightened of my dreams and the one eyed raccoons. She was there in the middle of the night when I woke up blind forgetting that I was in the hospital and spilled a bucket of ice water all over the bed and me. She never got angry or annoyed and often laughed calling me Snork. She was the first face that I saw after my blindness. Her words when she and Fish got the last bandages off and a sliver of my left eye opened, I saw her huge smile sitting right in front of me. She said, “It looks like a voodoo man shrunk your head.” We laughed, and it felt so good to laugh. A Jell-O commercial was the next thing I saw, that was pretty funny too. She held puke buckets, tried to talk my stinky ass into a bath, gingerly cleaned my sutures, protected me from evil, and always gave me a sense that everything was going to be alright.

She is my hero.

I breathed in life today after a deep cry. Not little puffs of air, deep, sucking from your backbone kind of thing. Like surfacing from under the water. I see myself swimming up towards the sun and it feels wonderful.

Mon, 22 Oct 2007 7:41pm

Hi family,

got a "Oh, very nice, very good, this is looking very good." from Dr. Habal today!

So we are on track and doing great.

Completed my Augmentin! (which is a huge challenge b/c it makes me sick)

Indoor sports for another week and practicing closing and opening the eye several times a day.

Eye is 60% open, sutures still in and will magically dissolve.

Bruising is now a yellow/purple, and I think it will be beautiful just in time for the wedding:)

Hope you all are well and I can't wait to see everyone in November.

Much love

Thu, 11 Oct 2007 7:38pm
hey loved ones, 
home from hospital,
surgery very smooth, 
good drugs, sleeping with frozen peas

 
Pre-op pink hat.


Pre-op, Dr. Habal marking for his incisions.


Post-op, not awake yet. Alana must have been chilly.


Next day, home & packed in frozen peas.  Expanding lungs after intubation...several times a day.  Ann is Candysitting.  And for the record, one of the best Candysitters ever!  
She did a rockin job keeping me iced, elevated, deeply breathing, entertained, medicated and relaxed. (plus snuck me out for some ice cream. :)  Thanks Ann!


Taking off bandages, healing.


I always need to sit while removing bandages. It's a strange and nauseating feeling, unsure of what will be underneath. 
It's surreal at times to see myself for the first time after surgery. I just try to remember, healing, healing, it's all a part of the healing. 
And it will get better.


Hold on, hold onto myself. I take a deep breath and try not to pass out.


My eye is suture shut. The guitar string sutures freak me out and now I worry about snagging them while I sleep.


Little angels come to visit and bring beautiful sunflowers.  Hannah & Josiah

Oct.11, 2007 10:08 am

Beauty grows within spiritual peace.
It shines through the surface through good health.
Our bodies illuminate the soul. Let it shine, let it shine.

I am here now, present in this inpermanent moment, not to worry of the past or control the future. Just here for the now, embracing this moment with love and faith. When we fail to be in the moment, we push the experience aside, deep within us they pile up like bricks in an empty lot.
They worry us, they disease us and make us anxious. Later we will deal with the bricks. They pile up, mounding, blocking, and destroying our view.
The future we try to control.
Enveloping the moment for what it is challenges our fears and concentration.
Today I am here, present in this time filled with love.
If found strength, wisdom and concentration during meditation this morning. And now I carry it with me, moment by moment with the courage and peace to stay in the moment, whatever it may be.

Wed, 10 Oct 2007 5:49pm

Hey friends and family, surgery is tomorrow at 12:30pm SJH same day,

I should be home by 6ish in time for My Name is Earl.

Say a prayer we'll send an update after tomorrow,

have a groovy day,

Candy

October 8, 2007 8:32 pm

Kicking a cold around and getting ready for surgery are draining me. Nesting for a week now. Despite my anti-oxidants and vit. C, I was not able to keep stress at bay and landed myself some ER funk. So the goal is 48 hours to kick this fever and be ready for the o.r. I feel pretty calm; perhaps it’s the Niquel. There is a list next to the computer of things to work on while I’m home. Paint things, file things, organize things, plant things. I make the most of my one-eyed world and hope to not run into anything. Once again friends are stepping in to take me on rides and keep me company. The camera is loaded and I’m ready for wherever this journey now takes me.

August 28, 2007 4:37 p.m.

We’re 6 weeks out from Operation Platinum Bling, so it was off to the fresh market for all of the fruit & veggies I could carry. I grabbed everything that was in season including my favorite super fruit, Pomegranates! I blended kiwi, berries, mangos & pom seeds into little anti-oxidant shots. They have been added to my daily diet along with vit. C , multi-vit, & B complexes. Woo hoo free my radicals!

August 12, 2007 10:34 a.m.

The greatest misconception from the people that do know me is that I’m not a super-hero. I get sad, unmotivated, feel defeated, and have days where the fight is just not in me. It takes a lot of strength to head out into a world where I know that I will be stared at, judged, and questioned. So I’ve learned to allow myself to have days where I stay in and lounge around in pink leopard print pajamas.

Come to find out, the world goes on just fine without me and everyone else has his or her own opportunity to be strong.

August 6, 2007 9:42pm

Platinum Bling surgery is scheduled for Oct. 11^th . This is really called Lid Loading. The muscles in my right eyelid do not function to close completely. It blinks about half way and at night I tape it shut. The vision in that eye has been diminishing at an alarming rate because of the exposure to the retina. The bling will allow my eye to close normally. Although this sounds like a small thing, several times a day unwanted things get in my eye. Soap, debris, etc. A few nights ago I was cleaning with my eye taped shut. Without any peripheral vision, I ran into my end table with my face & head. I thought something fell on me, I still couldn’t see the end table that I had just run into. I’ve smacked my pumpkin into Fish while climbing into bed too. And, new trick, I can dislocate my jaw while sleeping.

Please send 1 helmet, 4 orange cones, and a well-lit landing zone.

Tue, 10 Apr 2007

Hey gang,

Gold bling was removed yesterday in a very painful however short procedure that I do not wish to go through again. The pain was bad, having my eyelid held open with hemostats was worse. I could see everything happening which disabled some of my coping mechanisms. This is why I don't see horror films. Dr. Habal's comment, "It's just like giving birth, but we are done." It was the second time that I cursed in his O.R.

All is well.

Spent yesterday lounging with frozen peas, Urban Cowboy and a Demerol.

Alana and Fish took great care of me which included hand holding, patience and post- op eye maintenance.

Eye looks good today, feel great today, topical antibiotics only! YEAH :)

Having to stay out of the pool :(

Follow-up with Habal on Monday 4/16 to see when I can get back to swim training, and check on the healing process.

Onward and upward! Increasing vitamens, yoga and meditation.

ETA on platinum bling for Sept. after the triathlon season ends.

Well wishes for everyone and have a groovy day!

Candy

Wed, 4 Apr 2007

Hey gang,

Dr. Habal is removing the bling on Monday in the o.r. at his office. Alana will be with me, local anesthetic, should be a very short procedure. Yesterday I noticed the gold had come all the way through the eyelid, and I had quite a bit of pain and an unusual feeling of overall malaise during the week. Our worthy battle is over and we did our best.

There is good news. A week after my surgery, an alternative to gold was introduced, Platinum. Dr. Habal has given us the option to try again in 6 months. I'm taking it well knowing that we can give it another try. So, after Monday, we focus on healing and the tri season, and I'll return to lots of eye drops and taping at night. I know I committed to no more surgeries this year, but we'll have to slip in a tiny one this fall for Mac Daddy Platinum Bling.

Gold is so last season.

Candy

March 23, 2007 9:04 p.m.

14 months ago my face was cut open. My bones were sawed through, my orbit removed. The NF tumors abundant in their destruction, one by one were taken out. In the darkened days that followed, in the moments I spent laboring to breathe, I never dared dream. The days that followed led to a few steps at a time, to the bathroom, to the hall, around the nurse’s station. Breathless, exhausted, as if I had just completed a marathon, the hospital bed became my finish line. Demerol & Phenergan followed suit and I struggled to hold onto myself. Looking back, I was reborn.

My husband had to feed me. My husband had to bathe me. I had to be walked, guided, and allowances made for my slippery memory. I ran into walls, closets, doors, tree stumps and people. I had to trust the friends around me to be my eyes, I had to trust myself not to fall. When your head weighs 50 lbs and bobbles like a heavy pumpkin thrown into the sea, you have a tendency to fall.

Falling is of coarse the only way you learn how to get back up. (Roll Bounce)

Music thumps in the base of my heart. Energy surrounds me and it’s explosive. I feel as if I am about to burst like a grape so excited to see the sun that it leans forward filling itself silly. I am about to burst. It’s beautiful, exciting, resilient, and absolutely amazing. This gift of joy, this greatful gift of living a life with so much happiness. Living a life to it’s full potential. Isn’t that what we all really dream of? We all deep down inside want to give it our best and be recognized as the great and invinsable spirit that resides deep within our bones.

We all, given the chance, would do great things with our lives.

This is my belief.

I was told once that my presence at an art gallery would frighten visitors.

This was the first time I had experienced the erupt pain of the adult world. For some reason I thought bullies only lived in school buildings. What I didn’t’ realize was that bullies grow up to become angry hounds, selfishly waiting for their ship to come in. Growing angry with themselves, angry at their past, angry at what they feel they deserve. In 1987, my senior year of high school, I was awarded the opportunity for an internship at a local art gallery. There were 2 students from our high school chosen. I showed up at the gallery in my best dressed, briefed by my mother on proper interview techniques, eager, excited and hopeful. My questions were articulate, my knowledge adequate and my speech flowed like silk over my tongue. In fact, the manager of the gallery loved me, enjoyed every moment of our interview and was very impressed with my maturity. Then it was said. “ You’d be great for the job, but your face would scare away visitors.People would be frightened to approach you, they wouldn’t listen to you, they would only stare at your face, and we need somebody that can give walking tours through the gallery.

I was 16 years old.

I told the gallery manager that I had a funny way with people and that it had also been my experience that once I spoke with someone, they became very at ease with me, and somehow my deformity seemed to disappear. People have always responded well to me, I have a normal life. She said, “You know, you’re right, I am totally listening to you and have already forgotten about your face, but sorry.

Brian McCormick was awarded the internship that year.

Sometime in the early 90’s, I was living in Savannah, Georgia to attend the Savannah School of Art & Design when a man had a seizure in front of my car.

I jumped out, rolled the man on his side, allowed him to vomit keeping his airway clear. EMS arrived and I gave a full report of the incident and held the man in recovery position. They thanked me and asked if I was a Paramedic, I said No? and they replied, Well, you should be

My first ER rotation as an EMT student found me at Memorial Medical Center, Trauma, night shift. Within a few hours, an adult male in his 40’s was rushed in with a stab wound to his chest. CPR in progress, blood covered his clothing. I stood to his left as his head was cocked over to the side, able to look at me if life still lived within him. It was the first time that I had seen a dead body, a freshly dead body. As if his soul was still lingering above my head. Two other students were with me; I felt them press themselves tightly against the metal cabinet doors. I think fear came over them. I just watched. After the brief stink of utter chaos and comotion, the team stopped, stepped away from the bed, retreated into the hallways. His chest was cracked open. His organs lay before me as simply as slices of bread.

Does anyone want to feel the hole in his heart?

I do! and I stepped forward. With gloved hands I reached into his still warm body and felt around the heart. First gingerly, then gently squeezing. I had no fear, just a complete understanding of the human experience. Everything I just learned about this amazing pump just came into light. I fingered through the verticals, tinkered with valves and tugged at this perfectly small slice through the myocardial wall. It was so small. This puncture wound that killed a man.

I called my mother at 3am, I just touched a human heart!

From that moment on, it was decided. I would work in the trauma center. I would start as an EMT/Tech and be apart of this miraculous place where medicine is slung around like a perfectly insane octopus. I wanted to be part of the chaos and make sense of it. For some reason I have always been able to stand in the middle of chaos and be perfectly still, even just for a moment and get a snap shot of the real picture. I can see its outcome in my head and become guided in what to do. Instinct, trained skills, pure adrenaline, who knows. It’s a high. It’s the rush that keeps us addicted. Working in the emergency room is like really great sex with a really shitty guy. You can barely tolerate his presence and then you are rocketed directly into another universe.

In order to become a tech in the trauma center you needed two things. An EMT license, check, and a job interview. EMT’s without experience were not considered for an interview. Volunteers in the hospital were granted an interview opportunity with a letter of recommendation.

Long shot?

Maybe.

I applied to volunteer in the Neuro Occupational Health Center. Here patients were getting ready for discharge and relearning life skills. Like how to go to the grocery store, write a check, navigate sidewalks. You just spent time with them under the guidance of a therapist, helping them along. I met all of the requirements for the department and after taking a volunteer compatibility test, this area was most recommended to me.

I was denied this position by a panel of 4 people making up the volunteer committee board of something or other.

Across from a long desk a spokeswoman from the group said, “We think you’d be best suited for a position in the basement filing papers, that way you would have little contact with the patients.”

But I think I would be good with patients.

It’s your medical history.

The only medical history I had was Neurofibromatosis and that wasn’t’ even contagious...I didn’t get it.

“We don’t want you to frighten the patients.”

“Do I seem scary to you?”

In the 36 years of my life I can never recall scaring another human being except for my mother……

.and that was when I hid in the dryer and leaped out while she was loading the clothes.

I cried all the way home.

In my little chevette covered in Grateful Dead stickers, I cried all the way home.

My mother the next day introduced me to the American’s With Disabilities Act and I gave the volunteer committee 24 hours to reconsider their recommendation or I would go to the media with my story.

I was granted my volunteer position and learned a great deal from working with the therapists in the Neuro-Rehab unit.

Wed, 21 Mar 2007

Hey Angels, (I feel like Charlie now)

Woke up today and could no longer choke the tears down, spent the morning crying, praying and accepting that the bling looked like it was further out.

Went to Dr. Habal's anticipating going into the OR.

Instead, he told us that it looked better, and that I may be keeping the bling.!!!!!!!!

Keep up the good work everyone.

He told me NO CRYING for 2 more weeks, continue with laughter and love therapy.

If it does come out, we go to the O.R. immediately. But 2 weeks is great news, I've been seeing him weekly for almost 2 months now!

Thank you everyone, keep the prayers coming and I'll do my part to stay healthy and calm.

Candy

Tue, 13 Mar 2007

Yesterday I saw Dr. Habal and got some not great news.

He is fearful that my body may not accept the gold implant in my eyelid (my bling).

Since I've had it, I've been able to close my eye. Without it, it constantly burns, waters, I'm miserable and have to tape my eye closed at night. With it, I feel so much better and I can protect my eye. We've done everything and all that is left to do is put my mind behind my body and meditate, chant, will it to stay in. I'm not allowed to cry because it could push it out, so no crying. So, here's what I'm asking of my friends & family.

I need love, prayer and laughter. This leg of the race is called, "One with the bling." (thank you Michelle.)

So, please pray for me, I need it more than ever right now.

Pray for my health, pray for my body to keep my bling and live in harmony.

Make me laugh, and give me love.

Much love,

Candy

March 9th, 2007

Like all things in life, pain is impermanent.

Pain eventually comes to an end to be replaced with rebirth, light and an opportunity to love.

I just want to be filled with love.

Wed, 31 Jan 2007

Hey Gang

Didn't have a chance to discuss my year off plan with Dr. Habal today, seems he wanted to be in charge. He put me in the o.r., found some imbedded stitches in my eye and then pulled my ass through my upper lip. After the pain came the nausea followed by spinning rooms and hot flashes. My goal was to not pass-out. He kept wanting me to look at something on a q-tip, all I could see was blinding white light. What a unique surprise. Fish popped me in trendelenburg, recovered from the pale & sweaty limbo, feel a-ok now with some a new steri-strip and instructions to take it easy and my eye is taped shut again.

Oh and a side note to the Great Habal, he didn't put his entire hand in my mouth, but did manage to see how far he could push my eyeball into my skull.

I'm hiding under the desk as we speak.

We go back in 2 weeks :(

P.S. Michelle was finally discharged today :)

Kristen said that she was having a very bad day and they were heading home for a good bath and rest. Wishing her well and sending healing thoughts. I have missed talking to my buddy this week and can't wait for her to be on the road to wellness

Friday, January 26, 2007

I’ve decided to take a break from surgery. My body, my mind, and my family need time off. I plan on discussing this with Dr. Habal on Wednesday, and I believe that he will agree. Whatever we decide is left to do will be done next January, there is still a tumor in my lip that needs to be removed. Beyond that will depend on what the tumors decide to do and let us hope that they sit quietly dormant satisfied that they have gotten some attention. Meanwhile, we can contribute to progress researching other treatments for this disease. Maybe I can stay strong and healthy on pomegranates, fresh air and roller skates. My hair is falling out, it’s dry and breaking. I’m tired.
This decision first occurred to me while crying and struggling having my I.V started in pre-op. I hate pre-op. My body needs a break, my veins need a break, and my hair needs to heal.

As I meet and read about other people with NF, it’s the same story. Strong, courageous and inspirational people that all have had multiple surgeries. It’s not uncommon to hear 15, 20, 25 surgeries for tumor removal. Among them, I am nothing special, yet exceptionally lucky.

I can walk.
I can run.
I can hear.
I can see.
I can live my life to its full purpose.
So that is what I will do.

Jan. 16 9:25 PM

Hey friends,

Surgery went well, about 2 hours, came home, minimal pain with eye, sewn shut and covered for 1 week - left eye open - no driving - disliked SJH Post-op staff, pre-op great - energy is great-

sucked at Jeopardy tonight( hmmm Versed and Profanol make for short synapses) Unable to speak- lots of pain in throat from the tube- more than usual- cuts in mouth too...rough intubation??

Nursing throat with hot tea, soup, Popsicles, unable to speak, whispering a few words.

Using sharpie and clip board to communicate.

Watching pieces of the hockey game , going to lay down on my wedges with frozen pea packs.

Much love & have a groovy day :)

Jan. 16th….1:34am

The moments are ticking away and soon we will be leaving for the hospital again. I can’t sleep and there’s nothing left to do but write about my feelings. I’ve hydrated today, went to pre-op, packed my bag, scrubbed my face and now I am still awake. My right eye is so tired, it burns, I just want to close it. Alana came over tonight and her presence cheered me. There was an hour of calm in the house- Norah Jones on the stereo and I was baking a mixed berry birthday pie for my mom. The smell of the pie was awesome, not to mention if was full of antioxidants. Met with some good karma today. Met a stranger, offered to take a picture for her with her family. She later approached our table and asked for my name, she thanked me for being so thoughtful to help with the photo. Our conversation flowed like meeting an old friend. We had some things in common and she wished me many blessings. It warmed me and I was happy to meet her. As we were leaving St. Joes, Fish and I went by the Health Ministry offices to pick up my application for the health missions in 2007- the deadline is Jan. 19^th, unsure on how much I’ll be able to see in the next few days, I wanted to get my application in. The office was so small you could barely turn around. Sister Maria explained that I would need to schedule an interview over the next few days to be considered a candidate. I then explained that I was having surgery in the morning. She stopped her words and kindly placed her small dark skinned hand gently on my head, closed her eyes and began to pray for me. I smiled at first, then closed my eyes and became tearful by her gracious gift. To be so brave, to be so full of faith to stop and place herself in this place with me...I was just touched. Kindness, I experienced kindness in strangers today. That’s beautiful.

It’s mid January and already I have accomplished one of my goals. On January 6^th, I was given the opportunity to speak about NF at Planet Hollywood in Orlando the night before the Disney Marathon. My mother and I had the chance to meet the NF Marathon team, families, great people. By January 15^th, I have begun a process to go to Peru on a medical mission. Both of these opportunities just presented themselves and I was fortunate enough to be present. As much as I hoped for this year to be a time to settle, I have the feeling that much change in around. Apparently it’s not the time to slow down.

Jan. 3, 2007

I have rituals in December around my birthday, I get a new journal, take a look at last years accomplishments and look forward to a new year of goals and journeys. As everyone is celebrating the new year and resolutions, I thought I would share the list. The list for me has been in existence and practice since 1994 and something that I usually kept to myself. They include books I'd like to read, experiences, personal goals, places to visit and things to learn. Not everything will be accomplished, but to my amazement, most things will. What I've learned from this is to move forward no matter the size of the goal and along the way, life is being expererienced.

Bloom wherever you are planted.
Happy New Year everyone.

The LIST 2007

* Birmingham, Alabama, a visit to see Scotty and the Civil Rights Museum.

* Peru or Costa Rica-

* Speak more Spanish

* Salsa dancing

* Logo for Butterfly Challenge

* Speak publicly @ NF

* Print the family cookbook

* Complete the 3rd jewel

* Brikam Yoga (hot yoga)

* Meet Barack Obama

* Tampa Theater

* Swim 100 miles

* Return to school

Reading List-

The Audacity of Hope, by Barack Obama

Between a Rock & a Hard Place, by Aron Ralston

No Excuses by, Kyle Maynard

One More Day, by Mitch Albom

Nov. 6^th. 2006

The older I get the more I love fabric softener.

I’ve returned to Tuesday night Belly dancing class...and I couldn’t be happier.

I think I got a little burnt with tri-training,, even not doing the hard ass training like Alana, the Iron Girl left me a little doubtful and crispy. My swimming has improved tremendously and still brings me the most joy, I think it’s the solitude of the water. My mind seems to have more to do with a good swim than anything else. Alana has joined a Roller Derby team; I think she needed to shake the monkey tree a little as well. I’ve also returned to a regular Yoga practice with Namaste for relaxation and Inhale for a more challenging cardio practice. Groovy.

In the news of Karma- celebrating my birthday this year with the Good Mojo Bonfire.

Hoping to spend the evening with good souls, good friends, and welcome a new year of opportunities and blessings. Found some rainbow swirled marshmallows, most psychedelic looking, curious to see how they melt.

Daily drinking of C-Boost and Green Goddess, 2 Grams of Vit. C, and B complex, mult. Vit. for my water, green tea and pomagranite to get ready for surgery in Jan. 07.

Dr. Habal practices Yoga as well, and we talk asanas when I visit. He likes for me to do inversions in the months prior to surgery to increase blood flow to my head. It’s excellent having a surgeon discuss Yoga & nutrition as part of my treatment plan. He is truly a great match for me and I try to be a great patient for him. I noticed my ac vein on my left arm last night in the elevator, I could see it bulging again and let out a sigh of relief. “You’re back!” I hate getting stuck and my veins were in bad shape after the last round of antibiotics and long IV stays….

Waking from surgery is always a surreal experience. Waking from major craniofacial surgery poses different challenges. Sensory deprivation. My first memory of waking was muffled sounds, mixed voices of my family members. I would drift in an out. I remember people coming to speak into my left ear, as I had requested. I was unable to lift my head, unable to see, unable to hear well due to swelling and blood in my ears, my right ear was covered with mounds of pressurized padding. I would try to focus on what was being said, someone whispered, "You're ok, it's all over, they have sewn your eye shut." My mother told me that they did so much more, removed the tumors from my sinuses and from my optic nerve. I had the sensation, deep within me to cry, but I didn't have the strength, and the lump in my throat made it difficult to breathe. I was so worried about my airway. The swelling was closing, coming inward, forcing my cheeks against my tongue causing it to curl and making the small area I had to breathe through even smaller. I was unable to breathe through my nose, there were large plastic tubes holding my nares open, and they quickly filled with vomit and blood. I realized where I was and that if my airway continued to close that the ER code team would respond. I am apart of that same code team in another hospital and realized that it would take several minutes for them to arrive, several unsuccessful attempts at intubations, and I was fearful that I would need a trach or die. Then I would suddenly spin, spiral downward and fall into and endless black hole landing on a single structure unreachable by anyone else, no one could hear me, I couldn't speak, and I was in total darkness, and unable to hear any sounds. It was days later that I realized it was the Demerol. I was unable to differentiate at times between nightmares and reality. I'm guessing that this was a combination of the drugs and sensory problems. Other times everything that I heard that was familiar to me I could visualize perfectly. This gift that my brain adapted too was so precise that when I heard my IV pump beeping I asked my cousin Scott what color it was. He replied, "It's gray."Immediately, I saw the pump in my head, every letter, every word, every tube and button. I knew from the sound of the beeping that I had a downward occlusion, I adjusted my arm, then stopped the pump, reloaded the tubing, set the pump and started it back up. My hands moved fluently as if my eyes were wide open. When I arrived home and heard the sound of my bare feet smatter on my wood floors, I saw my living room and hallway, just as clear as I see the computer screen now. And if I heard a sound that was unfamiliar to me, my brain would quickly flash images, none that I had control over, and always frightening. I got caught in a tilting circus tent once, for the entire day. My husband later told me that I was leaning when I walked and kept running into my closet. I don't know much about blindness, I had been unable to see for a few days in past surgeries, but never for this long and never with these strange occurrences. My motivation for wanting my bandages off came on the morning of the 8th day post op. My hallucinations were so gruesome that I needed to see something real, I was losing my ability to connect with what was real and I became very frightened. So that day, we took the bandages off and dramatically cut down on the pain meds. It took Alana and Fish over 2 hours to get all of the bandages off. They were so patient and I never felt pain. A half hour later, my left eye let a thin slice of light in and I was able to see Alana's smiling face. My nightmare was over. Hope this is helpful, it's equally therapeutic for me to be able to write about it. So in a way, you are helping me too. Candice