
Surgery Journal:

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
Click on the song
title to listen to the music.
Your default player will
open.
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.
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, This combination of p.m.s. and my eye bling has put me in a real fuck you mood.
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. |
|
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
|
Nov. 6th. 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…. |
Thursday, October 05, 2006
EYEBALL BLING has been scheduled for 1/17/07
Currently this is a 2 hour procedure to add
the gold plate that allows my eyelid to
close. Dr. Habal stated yesterday that he
was unable to assess what was edema or tumor
tissue in my face. My face hasn't completely
healed so he doesn't want to tackle the lips
yet. However, in true Habal style, that is
subject to change. I will not see him again
until a week before surgery and that would
be when he would change his mind. I know
that everyone needs ample time to get off of
work. So as it stands, Mom is coming down on
the 14th, and I will use my local support
staff.
He also mentioned that he will have to go in
and work on my orbit again, shaving down
some of the bone. I believe this is
necessary too, however, my orbit still hurts
from the last surgery so I'm not looking
forward to that. Saw a white chick with
funky braids that is now my inspiration for
my next surgery hairdo. I will schedule a
consultation with my stylist.
THE GRILL:
Dr. Davilla does not want to do any work on
my teeth other than the prosthetics until
the surgery on my lips has been completed.
So for the next 5 months I will still be
Super Sweet with my retainer, and then have
a new partial made with teeth for the r side
and veneers in the front.
HOLIDAYS
I will be in Fernandina for Thanksgiving and
spending Christmas in Tampa. Fish is on duty
Christmas Day, so I will join him at the
firestation. Bree & Brian I hope that you
guys can swing through Tampa on your way too
or from Miami. Please let me know. If you
want to fly into or out of Tampa, we can
drive you to or from Miami. Just let me know
so that I can keep my schedule clear.
FAMILY COOKBOOK-
Scotty and I came up with an idea of having
the cookbook presented in a binder so that
recipe pages could easily be added in. That
way we can get the books to everyone, and
still have room in the future years to add
to it. Please send feedback on this. The
book is currently and affectionately named,
"EVEN NUTS HAVE TO EAT."
GOOGLEING
You can now Google Candice Patterson,
Neurofibromatosis. WOW
Last weekend I did an interview with NF Inc.
The article is about inspiration and was
prompted after someone from NF Inc. read
about me in Triathlete Magazine. The phone
interview was conducted by a women who is
the mother of a 9 year old girl with NF type
1. Her daughter's name is Alana. Most
groovy. The article will be posted on the
website as soon as I receive it.
LOGO-
A logo for the Butterfly Challenge is
currently in the works by friend of mine Ite who
is a graphic artist. This will be a
black/white design so that it is easily
transferred to t-shirts, water bottles,
hats, ect. The goal is to set up a
foundation for the Butterfly Challenge and
use these products to raise funds and
awareness for participation in future
events. My long term goals are to host fund
raising events, perhaps one a year in
December, such as a 5K, Prom, and
bonfire/cookout.
COOLER NIGHTS, are you digging the fall
weather, wherever you are, it's just
wonderful.
Robyn thank you again for keeping up the
Butterflychallenge website, you are doing a
fantastic job and helping me to reach so
many people.
Love you all,
Candy |
|
June 26, 2006
Busy week with a visit to Dr. Habal and Dr.
Davila.
Dr.
Habal, in his usual charming tone and accent,
said, "You are healing so well, I can't believe
it. Go, run, bike and swim this summer." He's
pretty evasive,,,but I took this as a green
light to have the summer off of surgery. I asked
him when he thought he could put the gold weight
in my eye lid, it's driving my nuts to not be
able to close it all of the way. I'm having to
tape it shut at night, put drops in constantly
ect. His answer was that he was working on a
solution, "It's complicated." He told me. I
asked about Yoga practice as well, I've had a
lot of pain if I bend over, however I feel that
I need the circulation to my face to heal. He
told me not to do anything that hurts my face,
it if hurts, try again in a few days, and then a
week, so on, until it doesn't hurt. And he's
recommended inversions when I am pain free. He
grinned, patted me on the back and sent me on my
way. "See you in 6 weeks Mz Candy."
Dr.
Davila is a periodontist specialist, dealing
with craniofacial reconstructions and cancer
patients. He's worked on a relative of mine and
comes highly recommended. He was the first
dentist that has offered me hope. They took
digital panoramic x-rays, molds of my teeth, and
after a 2 1/2 hour visit, it was determined that
I can get dental implants after a bone graft
placement...after Dr. Habal is done moving my
face around. In the meantime there is hope for a
partial that will help to improve/correct my
smile. The office staff was all Spanish speaking
and I was called affectionately "Mom-me" by a
woman named Pracilla. She had 6 foot long nails,
big lips, I liked her. The office overlooks MLK
and after 45 minutes of waiting, I had counted
all of the cars in the parking lot and done
quite a bit of people watching. Ed was the only
yellow vehicle. The most popular car color,
white, followed by red, black, and blue. Maybe
it's the Florida sun that makes it's residents
choose white. Anyway, soon after I was given a
remote control and leisurely lounged in the
dental chair watching VH1- It was the hottest
bods over 40, followed by which celebs have had
plastic surgery. During the many hours of office
waiting, I have a lot of time to think about
what I am doing and why. It's difficult for me
to understand why people with normal beautiful
lips want to make them bigger. Why anyone would
for no reason that I can understand get cheek
implants. Do they have that much time and money
on their hands. Are they THAT unhappy with their
appearance? How would they survive with a scar
on their face...for a day, a week, a lifetime? I
wonder. I have been treated differently since my
surgery. People are friendlier towards me. I
still get glares, but haven't been approached in
almost 2 months. Other than Dr.'s office staff
that think I have cancer. I was asked at the
dentist. "Are you in therapy right now?" I
replied, "Mental health therapy?" "No, chemo."
I
can understand the mix up. I was moved to tears
again when Dr. Davila told me that he could
help. It's been years and years of me asking the
dentist for help, and years and years of
rejection. "Your case is too difficult, there is
nothing we can do." I am not sure if technology
has caught up with me, or if I have finally made
the right contacts. Whatever the reason, I am
grateful. It's my goal to do some public
speaking in the coming years, and I would really
like people to hear my words and not just focus
on my face or missing teeth.
|
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May 17, 2006
12:45 am
Trouble sleeping again, trouble sleeping.
The
sutures inside of my mouth scratch me, but today
I noticed they scratched me less. My tongue is
grateful. Mama Fish made fried green tomatoes
and homemade cream corn...yum. I feel that I
have to travel everywhere with my eye drops and
a small plastic spoon. Feeling a bit lazy and
need to shake that up tomorrow and get back on
the bike, there's much pedaling to be done.
Update breakdown....
2
more weeks of annoying stitches in the mouth.
Monday 5/22 meeting a genetics counselor at USF
about the risks of pregnancy with NF. This
appointment was made a year in advance, which
the clinic described as normal. There is one,
ONE genetic person that can answer my questions.
There were 2 last year,,,,,,one retired. Getting
the latest lowdown on genetic testing and how
early NF can be detected in pregnancy. Also,
tumor growth related to hormone changes,,,,myth
or myth buster.
Wed. 5/24 Dr. Habal 2pm.......I hope he doesn't
put his entire hand in my mouth. He is a genius
with scars. The new scar goo, which I have to
recommend because it's the only thing that has
ever, ever really worked. New Skin topical gel
scar therapy. $11.00 at CVS, fabulous,
noticeable differences in just a few weeks.
Slowly starting to feel like myself again,
laughed today...a few times. Felt like talking,
called Grandma.
I
wrote down the names of the new friends she has
made at her assisted living condo, so I can ask
about them later. She finally has a real phone
again, thank God. What kind of nim rod gets an
eighty something year old women a (&(#*^% cell
phone. I tried to call her on it today and spoke
to Hector, who the hell is Hector.
Gunner and Abby once again do there part in the healing process and welcome me home. |
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April 26th
Visit with Dr. Habal
to discuss the plans for surgery the next day.
He promises to keep it short and that I can go
home that night if everything goes well and I
feel up to it.
He's a good man and
a phenomenal surgeon. |
Hey friends,
family,
Here is the update.
I have surgery scheduled for April 27th at UCH to remove
tumors from the soft tissue of the inside of
my cheek. He will go in through the inside of my mouth, sutures
on the inside, no new external scars.
Liquid diet for a few days, back to Popsicles and so on.
Much shorter recovery time and we are
thinking I'll only be under about an hour. Easy stuff compared
to the last one, no bone work, only
admitted overnight.
Out of town team mates---it is not necessary to come in for this
one.
Everything else looks fine, he said that I looked great, I told
him that he looked great too..
No talk of the next big surgery yet. He expressed that he wanted
to get the tumors out as soon as
possible because I have been biting them and making them
swell, which has been contributing to me
having difficulty speaking at times. He felt that they would get
larger if we didn't get them out
quickly.
In true Habal style, he recommended the surgery for Friday- I
axed that idea because I am flying to Jax
to visit mom on Sat. As soon as I return we'll start the pre-op
stuff.
All is well, I feel strong.
Fish and Alana were with me today. We scheduled the procedure on
a C shift, so they will be with me the
day of and after. I should be ok to be by myself the following
shift day. If not, we will implement
Candysitting for a day.
Love you all,
Candy
|
April 18, 2006- less than a week until my
next surgery!
It's Tuesday morning in Fernandina Beach,
Florida. I've spent the last few days visiting
with mom and Poppy in their new home in their
new town. It's peaceful and they are comically
becoming retired folks. Watching Jeopardy over
TV trays as I translate between them what the
other has said. My mother speaks softly, Poppy
mumbles to himself, and if you find yourself
sitting in the middle, you feel as if you are
the string in the telephone game. It's made me
laugh. They are young in so many ways, newlyweds
that seem as if 30 years has gone by in their
marriage. It's humorous and endearing to me.
This comfort of home, not the home I grew up in,
just the place where my mom now lives. An old
shredded green blanket has made the move and I
snuggle beneath it and watch TV with both of
them. My mother looks so tiny sleeping on a
giant sectional sofa, she looks so tiny. As I
watch her sleep, I realize that other than the
flu, I have never seen my mother ill or weak,
and I am grateful for that. I reluctantly think
of a time in my life when I may not have my
mother, it's too shattering of a thought and I
stop. I wanted to stay here, in Fernandina under
my fuzzy lime green blanket, away from
responsibilities, away from the waiting room at
UCH, the blood tests, paperwork and pre-op
x-rays that await me at home. There has been
little time to prepare for the next hospital
stay. I've made a list of what I need to bring,
we worked out that Alana will stay the night,
mom comes in on the weekend, cancelled my
dentist opt, shuffled shifts and so on. I'm on
the hunt for my favorite pop sickles as I cannot
survive without them. My hope is in a speedy
recovery from a very short surgery. My hope is
that I will not be wrapped in a pressure
dressing for a week. My reality is that I have
to wake up , be extubated, begin the days of
vomiting, feel the abrasions from the
metal tools that held my mouth open, and feel as
if my head and face are foreign to me once
again. Swollen and huge, painful and
pressurized, and still, we must get up, walk
around, persevere. I am nauseated as I think
about waking up and beginning this process of
recovery again. I was just re-learning how to
kiss, sleeping with less wedges under my head
and swimming in the glorious peace of the cool
and silent water. "In the water, she finds that
mind, body and soul get along just swimmingly. "
I
spoke with mom in regards to setting up a
foundation, meeting with corporate sponsors, a
large fundraising event and helping me to set up
public speaking events for NF. Her retirement is
6 wks. away and I need her help with things. She
is the business world and will know how to get
things rolling. One in 4000 births result in
Neurofibromatosis, and still, still it is an
orphaned disease. Is it embarrassing, ugly,
unpredictable? Why is this swept to the side?
Why is there no face for this disease, no
recognizable ribbon?
Meeting Catie has motivated me in a way like
never before. I, for the first time saw this
disease as unfair. I had never seen that in
myself. I worried about her future, her many
surgeries, her uncertainties. I fell in love
with this wonderful young lady, energy, pure
energy she is radiant like life itself. I felt
like I wanted to protect her. I wanted to know a
way to stop her tumors from growing and
returning, I just wanted it to be done, no more
surgeries for her. No more trying to make it
until the end of the school year, I just want
her to have an enriched life, leaving behind the
hospital, procedures and pain. It's a culture
that we share, and so many other NF patients
share. It hurts me to think of other children on
this journey, other families beginning this
journey. Why.
Even Josh who expressed to me before all this
began, he said, "You mean, you will always have
this. "
His
face, realizing that yes, I will always have NF.
It's a part of me that will come, go, grow and
go dormant for reasons unknown. I keep managing
my courage into one large atmosphere that spans
this year. I have believed that I can remain
strong throughout the year, and then pick up
with other goals, leaving behind these tumors.
The truth is, we do not know what they will do
and when they will do it. We can only hope and
go on living the best life possible. In some
ways, it is my greatest blessing, always wanting
to live my best life, and realizing what a gift
that is. Today, I struggle with my energy and
courage. In some ways, Alana and Fish seem more
prepared, reassuring me, encouraging me. They
are able to be stronger than myself because they
know what to expect, they have a rhythm to this
now and hopefully, I can relax a little bit. I
am frightened and apprehensive, feeling
emotional, tearful and unmotivated----also
knowing that I cannot give into this for long,
there isn't time to hide under the green
blanket, the time to be strong is quickly
approaching.
Returning home, leaving my four day hiatus is
necessary and difficult. There are some things
that only your mother can do for you. Ways that
a day of shopping, picking out paint colors,
lunch and trying on beautiful skirts bond a
mother and daughter. Regardless of how old we
get, we still can feel cradled and protected by
our mothers eating peanut butter sandwiches and
sleeping under a fuzzy green blanket.
|
|
April 11, 2006
What's new-
Bellydancing, swimming with my goggles, flip
turns, kissing, pronouncing "P"s, but not "F's,
rasberries, scars, nightime sleeping, walks with
Abby,returning to the E.R, White Lotus
Photography, uncrustables..and my hair- do.....
What's remained the same?-
The
patients in the E.R.,
|
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February 27th 2006, After Visit with Dr. Habal
Hey gang,
A
brief note about Dr. Habal's visit today, I've
very tired and will send more of an update soon.
No
surgery for at least another 6 weeks, next opt.
April 10th
The
bones are healing beautifully, he is very
pleased.
Lots of tumor still left in the right side of my
face that he cannot remove because I would have
no tissue at all left.
The
worse is over.
He
is unhappy about my scars and has given me more
goo to keep them moisturized.
I've been wearing a hat outside.
He
is requesting that I wear a pressure dressing
when I sleep to help with the swelling that
occurs at night.
I
still need to sleep as elevated as possible.
I
got the OK to use Ibuprophen again!
I
got the OK to resume all yoga positions!
He
was also proud of the newspaper article, we
brought him a copy, he clipped it out and put it
in my chart.
He
said, "This will do a lot of good for a lot of
people, this is very good."
He
was also proud that I was so active and
completed the 5k walking.
He smiled a lot today and has gotten used to the posse of Fish and ALana that come to every visit, in every room, and look at every scan, photo, ect. They have gotten use to my camera, my energy, Alana and Fish's questions, all of it.
It's a good relationship that I am happy with.
see
ya for now and have a super day.
<
Candy
|
|
February 27th, 2006
Update on healing,
Hey
family, this picture was taking by Fish while I
was checking into UCH last week for my batscan
#2-
It
gives a good idea of the new shape that is
developing, and my eye is mostly open. Still a
lot of swelling to go in the right and left
side, a lot of hardness and edema under the
right eye, but getting better all the time. Lip
stills swollen.
We
see Dr. Habal today at 1:30pm.
Bree....does this help?
Love you all,
|
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February 20th, 2006 6wks post –op. I thought that I would feel better; better than I feel by now. Daily my mantra has been, this is temporary, this is temporary. I still have a lot of pain, different from the beginning. Stark, sharp pains that come/go on my suture lines. Sharp intermittent pain in my head, peaks in swelling still occur with my upper lip becoming so swollen that it’s labor intensive to speak and concentrate on pronouncing my words. Yesterday, I recovered from 6 hours of shooting a friends wedding, too much too soon. I’m paying for it now with pain and swelling that extends to the left side. My right nostril was occluded again. My face feels so heavy, stuck in clay and I just want out. I’ve asked Fish to tell me that the swelling will go down, I feel stuck. There are nights that I feel desperate for a Demerol/phenergan, I only have a few left and save them for nights with severe pain. Trying not to do the Ibuprophen as per. Dr. Habal’s nurse, even that is difficult. Tylenol doesn’t help me and that is what I have been limited too. I’m desperate for anything to give me a break from the pain. It’s difficult today to hold my eye open, I want to give in and just cover it as I did Saturday night. Today I looked in the mirror and thought, did I dream last night that I cut out some of my stitches? Then I looked closely, nope, I really did that. I took an Ambian to go to sleep, thinking I’ll just sleep through the pain. I then did my nightly ritual, wash my face, brush my teeth, clean my sutures, q-tip my nose. I soak a q-tip in peroxide and put it in my nose, wait a minute and like a volcano foaming up, my nose mucus come forward where I can reach it. Thick mucus that stays trapped too far back and doesn’t want to blow out comes forward. I discovered this by accident, and now use it to my advantage. The bloody boogers only come every few days and I am miserable when they are hanging in my sinuses, miserable until I can blow it out. 3 weeks after blowing my nose, Dr. Habal told me not to blow, that I could get sub q air, well, I think I’ve done it. I have popping and pressure. I can’t stand not to blow. The blood clots have no where to go, they can stay in my sinuses and continue to occlude me airway, which feels freaking marvelous, or they can slip into my stomach causing me to vomit, again, marvelous. I’ve tried re-focusing, on my body, staying active to get my mind off of things. If I don’t feel progress in my face, maybe I can make it happen in my body. My arms are stronger and I’ve been dancing. I enjoy dancing up a sweat. Wide open speakers, disco or Melissa Etheridge, just me and the dogs, dancing on the wood floors. I feel normal then. I feel hot, loud, and normal for a little while. The pain this week has been so difficult that only distractions help. I am fearful for the next surgery, having my face touched let alone cut on when it hurts so badly. There is no way that I could tolerate it right now. Today is the 3d scan to see how the bones are healing, and how the tumors look. The 27th is Dr. Habal’s opt. To review the scans and discuss the next surgery. Although phase 2 should be a whole lot easier, it is not far enough away that I will forget the pain. I am apprehensive about the pain. I want to be quiet today. Quiet. |
February 15, 2006
Wasn't ready on this day for a big outing at the movies with popcorn and cherry Coke.
February 14, 2006
A good day!
February 6,
2006
Hey family,
I learned how to use the remote control for my shutter, love the independence.
First attempt at a self portrait. Working on some other stuff to illustrate how I spend my days and adapt to challenges.
This photo was taken 3 wks. post-op, day 20.
Have a great day and thanks for the encouraging words from everyone.
Love
Candy
|
January 28, 2006 1:14 PM
Subject: Leg 2 Hi team,
We are seeing Dr.
Habal on Monday, Jan. 30th to discuss how recovery is going and
we may be scheduling the next surgery based on this.
I realize that
everyone has busy schedules and we certainly understand that. If
you are able to come for a portion of, before, during or after,
all help is greatly appreciated. As we set the date and I
receive emails confirming who will be here/when, we will work
out details. Rest assured that this next one will be much easier
for several reasons. Foremost, everyone knows what to expect.
The second surgery will be shorter, less invasive, the most
difficult procedures are behind us now. My hospital stay will be
shorter. It is my thoughts now is that he will be operating on
the lips and perhaps the jaw line, maybe removing my bottom ribs
to create this summitry. If anyone is unable to make it for the
surgery, please know that we have lots of local support as well.
I love you all for everything you have given during this
process.
Dr. Habal operates
on Tuesdays.
Here are possible
dates.
March 7th ( 8 weeks
post op) and is an R week for Fish/Josh
March 14th (9wks
post op)
Remember, the week
of surgery and after are where we need the most help, thanks
again everyone.
Also, when the date
is set, please email me suggestions on what would make it easier
for everyone, in addition I will change something's for myself.
When I'm in the
hospital, I would like a rotation of 8 hours, so that everyone
has the opportunity to get rest, food, and basic care for
themselves.
Possible schedule.
6a-2p- Mom & Scott
2p-10p Bree & Fish
10p-6a Alana
This will keep
everyone more on their more natural schedule and teams allow
for breaks. Alana volunteered for nights because she is used to
getting up for calls and she was the easiest for me to wake up.
These hours also
keeep everyone out of rush hour traffic and allow for our shift
change prior to the hospital shift change, making it easier for
continuity of care and a less hectic atmosphere.
Send suggestions as
you think of them,
I will email the
actual surgery date as we know it.
|
January
24, 2006
I walked around the lake yesterday, and finally did something that made me tired.
Still having trouble sleeping, but I think the key is longer walks, I was pooped last night and slept for 2/3 hour blocks. Making progress.
Swelling is at a high, still not moving, R eye still not open. However, yesterday I pulled it open with my fingers and was able to make out outlines of images and recognize them.
Blew out 2 strawberry sized blood clots from which opened up my left nostril.
Swelling has occluded the right nostril.
A big stitch fell out of my nose today, yahoo, I look like I have big fishing line boogers in there.
Able to stand in the shower now, sitting on the floor to dry my hair, works out well.
Able to chew sandwiches in small pieces, cut into fourths, healthy appetite.
Unable to tolerate much fruit/veggies, still having to eat starchy things, puddings, ect. which make me feel like blah, but stay in the belly.
Drinking lots of green tea yesterday/today, flush, flush, flush, get the swelling down flush.
Pain is worse at night, and swelling is worse in the morning. Managing pain with meditation, walking,
Ibuprophen and 1/2 the dose of Demerol/Phenergan at night, helps me sleep too.
Eyeball nightmares have stopped.
Vomited only once yesterday, down from the average 3-4 times daily.
Pain stays at a 5-7 daily, tolerable with walking & distractions. 8/9 at night.
Able to smell a few things, and sometimes that has not been a blessing.
Doing light housework and some one pot cooking.
GOALS TODAY INCLUDE
1. 2 walks to the lake.
2. 8 glasses of water/green tea.
3. 3 bites of protein
4. mediation on healing
5. ab exersise/pilates for legs
6. write thank you cards.
7. Maintain positive attitude.
8. Take a nap
Have a super day!
Love ya,
Candy
|
Day 22, 12 days
after surgery I make it to the family table for dinner with friends.
Alana, Danielle, Fish, Josh,
and Amanda fill the table with laughter and stories.
Jim & Debbie Tishneor (Josh'
parents) brought over a tuna casserole, salad and bread.
I was able to eat the
casserole and applesauce.
I'ts been wonderful having
my friends come by, regardless of my mood, swelling, stitches,
pain level, they come and share this experience with me.
My swelling on this day
began to go up and continued to swell over the next 3 days.
Hoping that it will begin to
go down again.
R eye still unable to open.
Appetite is good. Holding
down food, nausea and vomiting are limited to 2-3 times a day.
Eating small meals before
meds helps this problem.
Still sucking on popsickles,
up to 10 a day for pain in my mouth.
My mouth is constantly dry
as I still breathe through my mouth, sometimes able to breathe
through my nose.
The right nostril is has a
lot of swelling,
the left fills with blood
clots that move throughout the day.
Every day it becomes easier
to breath, although the air sometimes make me cough, I'm not
able to humidify it.
Showers/baths feel
incredible, help me breathe. |
|
Day 21
Wide hairband help me keep
my suture site clean, lessen the burdon of doing my hair.
R eye still swollen shut,
light causes piercing pain and vomiting, so I've chosen to keep
it covered until it opens and is able to dialate/constrict with
light changes.
So far I have been able to
make out some foggy light and outline of images.
Doing great on this day,
feeling wonderful, full of engery, but still doing many things
from the bed, visiting, eating, sleeping sitting up.
|
January 19, 2006
Hello Team!
Great Job everyone.
I want to tell each and everyone of you how proud I am of you all. This race is a difficult one and we have made it through the most difficult and dangerous leg. Thank you for the endless, selfless love that you all gave me while caring for me. Thank you.
Thank you for supporting eachother.
There will be another time that I can share with you my gratitude, but know this, you all have helped improve and prolong my life, and there is no greater gift.
From my soul , with all of my heart,
I love you.
Candy
Monday, January 9th
1:52am 6 Hours Before Surgery
I had a great day today,
Final members of the support staff arrived, had a peaceful lunch of salad, soy beans, raisins and crunchy things.
Tortia chips and queso. I wanted a Margarita, I wanted a big Margarita. An oversized cold glass of glowing green sweet goodness.
I drank a big water instead.
Made crab cakes, bought 2 groovy hair bands, and shaved an inch off of the right side of my head.
I had no idea that my scar went so high into my scalp.
I've embraced not wearing makeup and am practicing being comfortable with that, easy to do with family around.
Many things still to check off of the list,,,,,,however,
I have let go, the world will not end if the floor doesn't get mopped.
I'm tired, very tired.,
Ended the night with getting my hair braided.
They are ghetto, they are Snoop, they are funk, they are different than Sugar, they are Brown Sugar.,
they are tight, they are floppy, they are conditioned, they contain one solitary Buddha bead,
They are like nothing I've ever seen on my head before.
They are black,
they are shinny,
they are mine and they allow the wind through and make my head cold.
They were my ritual.
January 6, 2006 4 Days til Surgery
Hi Team, here's the latest schedule info.
SATURDAY-
* Buddhist Temple 1:30pm
* Scotty driving in from Orlando, eta sometime @ 3pm.
*Welcome Scotty Seafood Dinner @ 4pm
Menu- Crabs/shrimp, coleslaw, cheezy bisquits, corn on the cob, Girideli Double Chocolate Brownies :)
( please pitch in 10 bucks for crabs/shrimp, byob if you are drinking)
* fire in backyard at sunset, marshmellows & sticks available.
SUNDAY-
* Bree arrives from Md, airport at 1:30pm, dropping off Scotty's rental care at same time.
* Mom & Paul arrive, driving from Jax.
* B shifters Team Members on duty at FD ( Josh, Fish, Alana)
* Comedy releif, Scotty is bringing Last American Virgin
MONDAY-
* Fish, Candy, Mom to Dr. Habal's office 1:30pm
* Fish, Candy, (Mom?) to UCH Hospital 2:30 for admission, pre-op testing
* Pre Race Dinner (aka Last Supper) @ 7:30pm
* Tammi coming over in evening to braid hair.
* Candy NPO after midnight
TUESDAY- Race Day
** will get times on Monday from UCH
surgery is anticipated to last 4-6hrs.
hospital admission b/w 1-3 days
University Community Hospital- Fletcher
THURSDAY JAN. 12th is Mom's birthday!
OK team, things are looking great, I'm feeling great, yoga going well.
Candy
January 4, 2006 6 Days til Surgery
Hello support staff! :)
It's that time and through my preparations I have been thinking back to past surgeries to equip myself and you all with the best tools for the best outcome. I know that your purpose for being with me through this experience is propelled by love and compassion and I am grateful. Here are some things that I have learned and have had difficulty communicating, it would help me if you all could use these tips.
BEFORE SURGERY
I need to do many things, I make peace spiritually. I may be quiet and turn inward. If I am frightened, I will tell you. I need to take good care of myself and won't be as available to solve issues. Please understand that my mental state throughout this is important for my overall well-being. The most frightening moments for me are in pre-op and in the operating room. It's cold, I'm naked, vulnerable and scared. I cope with this by repeating a mantra or song,
I prepare for going under by keeping a pleasant picture or journey in my head, I visualize it, I go there and will stay until I wake up. I will be on the water under the warm sun.
WAKING UP
It's confusing, sounds, smells, sensations, everything is strange, I don't feel apart of myself. I have no recollection of time therefore, several hours to me feels like a split second and often when I am waking, I don't know that surgery has even begun or is over.
Please hold my hand, say your name, let me know that you are there, tell me that I am ok and it is over. These things are most comforting to me.
Have the TV on, I sleep that way at home. Please no wars, bombs, guns, drills on the TV. they give me nightmares. Cartoons give me good dreams. I know that you all will be very tired from waiting, please relax when you can, watch what you want in my room.
IN THE HOSPITAL-
My heals and hands get very sore, very fast. Rubbing my hands, arms, feet feels good. Everything else hurts so don't touch it.
Thirsty, dry thirsty, thirsty like being lost at sea. Painful, burning, swollen mouth, only cold, very cold, icy slushy things feel good. Warm things burn and sting very badly, only very cold things feel good. I will have stitches in my mouth and they feel like needles, only very cold things until I ask for something warm.
NO ORANGE JUICE,
NO MORPHINE.
I want to sit up as soon as possible.
I want my family as soon as possible.
I want to stand and walk to the bathroom as soon as possible.
Only visitors that I have listed, only family.
Alana is family.
LEAVING THE HOSPITAL-
I want to leave as soon as possible.
Please bring a blanket for the car ride home.
Please be careful of big bumps in the road.
HOME
I would like to take a bath as soon as possible.
I would like to sleep in my bed as soon as possible.
When I feel good, I will get up and stay up until I need to lay down again. Please know if I am sleeping, that my body needs the rest. Please play cards, games, go out, and take good care of yourselves during this time. It is stressful caring for others and the key is to take good care of yourselves, please do that for me. Get out of the house when you need.
Take vitamins and wash your hands frequently.
Fish and I work in extremely stressful situations, in complete chaos at times. For this reason, we like to have a peaceful loving home life. We need times when the tv is off, just music in the household, this helps us bring our home and ourselves back to center.
Please feel free to burn incense or light candles whenever you like.
Please eat and cook anything that you like.
We hope that we can make you as comfortable as possible while you are away from home.
We understand that it's get's crazy with our 3 dog family, especially with a puppy and an antique. Thank you for your patience, we can't help it, they are our children and we love them.
Thank you for helping me through this.
I love you all,
Candy