Thursday, September 11, 2008 3:07 PM CDT

Hi, I’m back home. Thank you for all of your prayers, calls, emails, & texts. Your prayers & encouragement were definitely felt. The past few days I have been working on the final things I wanted to talk about & torn between the fear of speaking in front of a lot of people but also so excited to be given the opportunity to do this. Being an advocate and doing whatever I can to help and share is my true passion in life. It makes going through all of this more than worth it in my eyes.



So many of you have said that you wish you could hear the talk. Some of you even asked me to video tape it. Goodness, I was just way too nervous and excited to be able to think about that. I did have Bennie & my mother there. But to help you all feel like you were there if you read below I have posted the notes that I used. I read some of this, some I just went from memory, and then some I just spoke from my heart. The heart stuff I don’t have all of. But this gives the bulk of it.


Before you start to read it though I want to tell you that these medical students were amazing. They were so attentive. We laughed together and they asked a lot of very good questions. I was even asked which chips are the best to lick. For those of you wondering what in the world is she talking about, that was about when I had to go the long stretch on TPN NPO, which means I was being fed through a PICC line & couldn’t eat. So my answer was that Dorritos are the best to lick because they don’t crumble easily and they usually have the most flavor. Being on TPN you kind of get use to not being able to eat (kind of, but not completely). What I missed the most though was tasting things. So that is where licking chips came from.


There were a lot of serious questions asked also. I was very impressed by this group of future doctors. Who knows, maybe one, or even two, or many will decide to go into research, genetics, be a colorectal surgeon. No matter where their career decisions take them I hope that today I was able to make the study of genetics more real, more than just something to study in a textbook, maybe even more personal.




My Case History (Patient View)

My history basically starts at about 8 years old. I had already shown signs of possibly having FAP (passing some blood & slight bowel changes).

Right now I would like for you to think back to when you were 8 years old.
At 8 years old you are in the 2nd or 3rd grade depending on when your birthday is. At 8 years old you are all about playing. The worst things for some of us were having to go to school every day and summer not being quite long enough.

At 8 years old I had my first scope for FAP. Now let me tell you 35 years ago hospitals were not child friendly like today. How do you explain to your 8 year old what is about to happen to her, much less how the outcome of this could change her life? Of course, I didn’t understand why the nurse and doctor were doing such hurtful things to me. I do remember hearing the doctor apologizing to my mother about having to use a rigid proctoscope. At that time and at that particular hospital that was the scope they used.
My mother was told that I had what they described as little hob nails in my colon. But at that time they felt it was too early to do anything. They wanted me to be monitored.

Fast forward through many different hospital visits for scopes and opinions, to being officially diagnosed at 12.

Just before I turned 15 I had a total colectomy. It didn’t slow me down. I was told that I would have dietary restrictions. Other than bowel changes, which became what I considered normal, my teenage life moved on.

From the time I was diagnosed until shortly before my son turned 3 years old I had no idea what having FAP was. As far as I was concerned I had the surgery, life went on, and every 6 months I had the inconvenience of a scope to check my rectum for polyps. I had no clue.

So in 1991 we were blessed with a beautiful baby boy. Not long after my c-section I realized my scar didn’t seem to be healing the way I thought it should. After 2 ½ years of questioning my gyn about my concerns she ordered a ct and sent me to a plastic surgeon & then a general surgeon.

I’ll never forget the day I received the call from the general surgeon to tell me that I had Gardner’s Syndrome. I quickly told him he was mistaken. I had FAP. After I had the chance to absorb what this meant it became my mission in life to become educated so I could be proactive in my medical care & treatment.

Learning what this disease truly was also brought heartache to me because I had a small precious toddler. Every time someone would tell me how much he looked like me, I would say a silent prayer that looking alike was where it stopped. I remember praying that I would take whatever surgery I had to if my baby could be ok and never have to go through this.

I need to stop here and say that I am happy to be here. God didn’t make a mistake on me. I am exactly who I am suppose to be. I haven’t ever asked why me. Because why not me?

In 1994 & 95 I had major desmoid tumor reconstructive surgeries. The 1st entailed removing the lower 3rd of my right & left rectus muscles, reconstructing with gortex mesh & a muscle flap from my left quad. With lots of painful physical therapy I can walk across this room & none of you would be able to see any type of limp. I was told while in physical therapy that I would always have an uneven gait. But determination & faith are the overall best physical therapy.

During the ’94 surgery they also performed a tubal ligation. I was told that because of the risk of passing this on to future children, the danger of more desmoids, and inability to be able to carry another baby to term after my abdominal reconstruction,; it was in my best interest to have a tubal.

Just 11 months later I had to go back to have the next surgery. Because the tumor had reoccurred so quickly the surgeon decided it would be best to follow up with 7 weeks of radiation. At the time the benefits of hyperthermia were still being studying. They decided to combine my radiation with hyperthermia. I’ll tell you the years I lived desmoid free were worth the horribly burned, raw skin I had to endure.

While I was living desmoid free I continued to have my scopes every 6 months like clockwork. I felt good and life went on. During that time my husband & I decided to have the genetic testing on myself & Zach.
So he has his own 8 year old story of having his blood drawn by someone that inflicted way too much pain on a little boy.
Waiting on the results was hard. We wanted to know, but we were scared what we would hear.

The most wonderful part of this entire case history is that my son does not have FAP. His APC gene doesn’t have the defect, therefore FAP stops with me, in my family.

In 2001 I was having more trouble with polyps in my rectum. The colorectal surgeon I was seeing for my follow up, on many occasions biopsied polyps. The week before my son’s 10th birthday I had to have multiple biopsies. I was told I would pass a small amount of blood. That week I struggled, not feeling well & passing definite blood not just small amounts.
I am a mom though & I didn’t have time to not feel well. The morning of Zach’s basketball game & birthday party I hemorrhaged in our bathroom floor. I remember hearing Zach laughing & jumping on my bed, excited about his basketball game & his birthday party later that afternoon. I knew things were bad. I knew I had to stay focused and awake and I didn’t want Zach to be scared.
We found out at the hospital I had lost over 5 units of blood.

While I was in the hospital (different hospital) my mother spoke with Mrs. Ingram about who she would recommend at Vanderbilt to take over my care. As a mother she wanted what was best for her baby. This is when Vanderbilt became a part of my life.

Since 2001 when Vanderbilt became what I teasingly call my “second home” I have been blessed with a team of doctors that truly care about me as a person not just a “science project”.


You are all very fortunate to be at Vanderbilt studying. You will learn from and have the chance to work with some very dedicated, compassionate doctors. Take every opportunity to absorb what they have to teach you. You will be a better doctor if you do.


To speed things up a bit from this point on I will give you a list of the surgeries I have had at Vanderbilt.

Starting in January 2003
J pouch surgery (many complications)
Malnourished, TPN, 7 months later takedown

Total hysterectomy
Leaks, multiple fistulas, more desmoids

Stent dependent (stent changes every 3-4 months)

Desmoid removed from neck

Adrenalectomy (left adrenal gland- 18 months of steroid therapy until “Sleeping Beauty” (the right adrenal) decided to wake up)

Multiple exploratory surgeries

Many ERCPs (ampullectomy)

Way too much trouble with abdominal abcesses
Literally from 2003 till Dec. 2006 multiple drains & being on TPN

Tell about what it’s like to be on TPN NPO (licking chips)

Multiple close calls

It’s hard to remember everything because it has become so much.


Talk about living with an open wound for the past 2 years.

In closing I would like to encourage & challenge you with the following thoughts.


The patients of today & the future have a vested interest in their medical care & treatment options. We have access to the internet, we know about clinical trials, & lets face it…when it’s all said & done we, the patients, care the most about our treatments, our care, & our lives.

Each of you will invest many years in medical school. You will study long hours, be sleep deprived, & maybe even wonder if this is what you really want to do. My thoughts for you are…yes, study hard, gain the knowledge, become a compassionate, driven doctor in your chosen field of medicine. There are many people out there that need what you will have to offer. Make a diference.


In the course of your studies and then career try to remember that each person that comes into your clinic, er, operating room is more than just a medical records #. We are people with families, careers, hopes, & dreams. We could be your mother, your father, your sister, your brother, or even your child.




I hope you enjoyed having the chance to read this. I am still on cloud nine.



Quote of the day:

“I’ve learned that people will forget what you say, people will forget what you did, but people will never forget how you made them feel.”
~ Maya Angelou


Verse:

However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me – the task of testifying to the gospel of God’s grace.
Acts 20:24