Wednesday, 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.
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.
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,
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.
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,
Friday, January 6, 2006
4 Days til Surgery
Hi Team, here's the latest schedule info.
* 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, marshmallows & sticks available.
* 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
* 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.
Monday, January 9, 2006
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. Tortilla 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 shiny, they are mine and they allow the wind through and make my head cold. They were my ritual.
Thursday, January 19, 2006
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 each other. 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.
Saturday, January 21, 2006
Wide hairband help me keep my suture site clean, lessen the burden 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 dilate/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 energy, but still doing many things from the bed, visiting, eating, sleeping sitting up.
Sunday, January 22, 2006
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.
It's 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 popsicles, 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 breathe, although the air sometimes makes me cough, I'm not able to humidify it.
Showers/baths feel incredible, help me breathe.
Tuesday, 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!
Wednesday, January 25, 2006
My sunglasses fit better, my Iron Girl hat fits better,
proudly walked the furthest, 1/2 mile.
4 weeks to get up to 3.2 miles for Gasparilla on Feb. 25!
Day 10, felt great on this day, excited about mom's arrival. She drove in Friday night 1/20 after work,
when I saw her, it was the first time that I cryed about my changes. Mom and I are the only true vetrans of all 17, now 18 surgerys. We had both given up hope on any improvements many years ago. Her joy, my joy, a little girl that she waited a long time to see.
8 days after surgery, managing pain, with Abby and popsickles.
The roof of my mouth is raw, painful, the only thing that feels good is ice chips, popsickles.
This picture is one week after surgery, the day Alana & Fish took the bandages off, later that day, Alana spent 2 hours cleaning my sutures and removing dried blood from my skin. I continually get fluctuations in body temp, and get very cold easily, so, I keep my pink cap near by.
Saturday, January 28, 2006
Subject: Leg 2
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 somethings 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.
6a-2p- Mom & Scott
2p-10p Bree & Fish
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 keep 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.
Monday, February 6, 2006
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.
Tuesday, February 14, 2006
A good day!
Wednesday, February 15, 2006
Wasn't ready on this day for a big outing at the movies with popcorn and cherry Coke.
Monday, February 27, 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,
After Visit with Dr. Habal
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 Ibuprofen 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, etc. They have gotten used 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.
Tuesday, April 11, 2006
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.,
Surgery #2- Scheduled 4/27- UCH, to remove a tumor from inside of my mouth. Easy stuff compared to surgery #1- short hospital stay, short recovery time. I guess I need to include what happened in Surg. #1- hmm.
Tuesday, 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, canceled 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.
Sunday, April 23, 2006
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,
Wednesday, April 26, 2006
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.
Thursday, April 27, 2006
Dr. Habal making markings in pre-op for surgery.
It's a sterile one-time-use pen,,,so he gave it to Alana when he was done.
We found out it was Dr. Habal's birthday...so we sent a message for him to see in the operating room.
Later he told us that he took a photo of it with his cell phone.
Gunner and Abby once again do there part in the healing process and welcome me home.
Friday, April 28, 2006
It's my wedding anniversary. I feel about as good as I look and I lay on an ice pack. It hurts to talk, but it's nice to be home and I am happy that we made it home from the hospital last night. Alana spent the night with me just in case, but I didn't need to wake her. No vomiting. Up and around ok. Pain is tolerable.
Monday, May 8, 2006
This most recent surgery only lasted and hour, more tumor was removed and the sutures inside of my mouth are not bothering me as much. It's been at least 10 days and I feel so weak and still very depressed. There were no one-eyed raccoons chasing me, no vomiting, and no long hospital stay. There have been problems with my veins, stomach, diet, fatigue and a feeling that the Anastasia and Demerol are toxins that I must get rid of. I think too many elements have collided and my spirit is in jeopardy. Yesterday I had oodles of time on my hands while doing a medical stand-by at the Polk Co. Power plant, not one patient, just me to take care of. I didn't have to speak to anyone and could sit down as often as I needed to. In fact, I had to make it a point to get up once an hour to walk around and get some sunshine and fresh air. I read half of Spontaneous Healing by Dr. Andrew Weil, within it were my hopes for learning how to recover better from my surgeries. But I have discovered much more. I've ditched all of my medications except Pepcid and my BP med, which I hope to get rid of within 6 months. I've decided to learn more about guided imagery to manage my pain, and eventually work with my body in trying to prevent tumor growth with macrobiotic eating, meditation, and vitamins. I know some people will read this and say oh, she's fallen off the banana truck. My view is that the medical community has no idea, just a few theories on what makes NF tumors grow- hormone changes and radiation. And I am seeking another way to earn a living that removes me from the frequent X-rays , and have painfully decided for the time to not have children. With the knowledge that I have 2 tumors sitting on my temporal lobes that may or may not grow, and that currently, they would be inoperable, it is my responsibility to govern my life and body in the healthiest way possible. This way of altering diet, stress, lifestyle can in no way harm me, only help and it is the right choice for me. It will be difficult, I need to give up sugar and I've come to realize that I really like sugar. I will give up soda and that, out of all of the things, I really , really love diet coke. To my best estimates, I need to make these changes one by one, gradually, a cold turkey approach could bounce me into failure. I've been on this road for many years already in many different ways, now it's time to fine tune it. "You can tune a piano, but you can't tuna fish." He he, Reo Speedwagon.
I type this as I drink a cafe con leche, yummmmm. This will be a tough one too. Scotty went to Costa Rica for a Spanish immersion program last year, he spent several hours a day learning Spanish and lived with a host family. He returned from this trip sounding and living healthier than ever, he walked, took public transportation and ate organically. He wasn't seeking out a radical change of lifestyle, but he lived a simple life with his host family that grew their own food. I'm looking into attending this program next year in lue of the annual cruise vacation. The school offers 5 hours a day of education which includes language, cooking, and dance.
Working on lifting the fog and finding my humor and harmony. The curcuma has pushed through the dry dirt in the broken pot-this gives me hope.
Wish me luck for I feel somewhat defeated but haven't given up on how to lift myself. I'm in need of a spiritual intervention.
Wednesday, May 17, 2006
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.
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.
Monday, 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.
Thursday, October 5, 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.
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.
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.
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."
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.
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,
Saturday, October 14, 2006
There are not enough words in my heart to describe my gratitude for Dr. Habal.
What he chooses to do with his life is nothing less than miraculous.
How often is it in our lifetime that we meet a human being so gifted and humble? He is light in the soul.
He made me feel deserving of his help.
“Why didn’t you do this sooner?”
Very soon after my surgery, I think in the second week, I was sitting in the tub. My hair in braids like a little girl, just sitting amongst the bubbles, happy to be there. Able to breathe for the first time in my house. My house up until that moment had been full of worry and fear. I had then become happy. I forgave my tumors. In that instant, ( It was the day we took off the bandages.) You could physically feel a sense of relief in the house. I forgave my tumors. If it hadn’t been for them I would have never returned to surgery. I had long given up hope of ever finding a surgeon that would really make a difference in my face . I didn’t dare breathe the hope. I had pushed it so far from myself that I failed to even dream it.
In my dreams, in my mind, my face has always been normal.
I often forget that I am viewed otherwise.
It is one of my greatest blessings.
The woman I see is radiant, lively and beautiful.
I didn’t dare dream it.
And I realized that there was a part of me that didn’t think I deserved it. I had forgotten about myself somewhere along the way.
Isn’t that what women sometimes do?
This journey is frightening at times.
If it weren’t for my journal, I would have forgotten how bad I felt. I would have forgotten about all of the vomiting and dizziness.
I had forgotten about how painful getting through an hour was. How frustrated I would get.
My pink hat still sits at my nightstand, but it’s further out of reach.
I can always tell where I am with healing by what is on my nightstand.
I guess that’s telling of whatever is going on in your life.
You’re lover’s watch, a box of tissues and a diet coke?
A radio alarm clock, cocoa butter, a rock and a little Buddha.
Monday, October 23, 2006
Exchange with Allison Walsh of the Children's Tumor Foundation:
Date: Monday, October 23, 2006
From: Walsh Allison <firstname.lastname@example.org>
To: Candice Patterson <email@example.com>
Subject: great thanks
Candice, Would you mind giving me some details about when you first awoke from your surgery? Thoughts/emotions... I know you awoke to darkness - and that must have been so frightening... thought it might be attention-grabbing to start there. (Let me know if you don't feel comfortable sharing this!) Thanks. Hope you're doing well!! Allie
Date: Mon, 23 Oct 2006
Subject: Re: great thanks
To: "Walsh Allison" <firstname.lastname@example.org>
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 a part 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
Monday, November 6, 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….
Wednesday, January 3, 2007
I have rituals in December around my birthday, I get a new journal, take a look at last year's 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 experienced.
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
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
Tuesday, January 16, 2007
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. 19th, 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 6th, 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 15th, 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.
Tuesday, January 16, 2007
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 :)
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.
Wednesday, January 31, 2007
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, March 9, 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.
Tuesday, March 13, 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.
Wednesday, March 21, 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.
Friday, March 23, 2007
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 course, 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 grateful 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 invincible 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 the 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 commotion, 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.
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.
Wednesday, April 4, 2007
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.
Tuesday, April 10, 2007
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 vitamins, yoga, and meditation.
ETA on platinum bling for Sept. after the triathlon season ends.
Well wishes for everyone and have a groovy day!
Monday, August 6, 2007
Platinum Bling surgery is scheduled for Oct. 11th . 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.
Sunday, August 12, 2007
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
Tuesday, August 28, 2007
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!
Monday, October 8, 2007
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.
Wednesday, October 10, 2007
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,
Thursday, October 11, 2007
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 impermanent 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.
Thursday, October 11, 2007
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
Monday, October 22, 2007
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.
Wednesday, October 31, 2007
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.
Monday, November 5, 2007
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-bye to the super sweet retainer. This will take a few more months, but after what we’ve been through, this will be cake!
Friday, November 9, 2007
A Response to the Bright Lights, Cold Steel Journal entry of Oct 31.
From: Candice Patterson
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 -----
To: Candice Patterson
Sent: Friday, November 09, 2007 5:02 PM
Subject: Re: Journal entry
This is so personal and deep. How do you share this? If I was the crying type, I would.
Wednesday, December 12, 2007
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, upside downing, stressing, crying or straining."
So...next week it will be frozen pees, wedges, comedies, baking, and painting.
I'll do the same.
Saturday, December 15, 2007
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 tempted to send this mutilated package back to the manufacturer 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.
Monday, December 17, 2007
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,
thank you all,
Wednesday, December 26, 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.
Thursday, December 27, 2007
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 YborCity. 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.
Monday, December 31, 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.
Follow the link below to see Butterfly Challenge on the CTF website.
Nf marathon team,
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?
Tuesday, January 1, 2008
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.
Friday, January 25, 2008
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.
Tuesday, February 19, 2008
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 sabotaging 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.
Sunday, November 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.