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I was told that because of the risk of passing this on to future children, my danger of developing more desmoids, and my inability to be able to carry another baby to term after my abdominal reconstruction, that it would be best to have my tubes tied. For Bennie and me, there was no decision to be made. We knew that the doctors were right. So in 1994, during a surgery to remove the desmoid tumors, I had a tubal ligation. But it was still a sad time for me because I was a young woman (29 years old) giving up my ability to have children.
I continued to battle the desmoid tumors. For a while, I felt good and life went on. During that time, my husband and I decided to have the genetic testing on Zach and myself.
Waiting on the results was very hard. We wanted to know, but we were scared what we would find out.
The most wonderful part of this whole story is that our son does not have FAP. The doctors were able to identify the defect in my APC gene that caused my disease. Zach’s APC gene doesn’t have the defect; therefore, in my family, FAP stops with me!
While I’m thankful that my son will not have to face this
disease, my battle continues.
In 2001, I began having more trouble with polyps in my
rectum. The week before my son’s 10th birthday, I had to have multiple biopsies. Later that week I was really struggling, not
feeling well, and passing blood.
But as a mom, I didn’t have time to not feel well. The morning of Zach’s birthday party, I passed out and hemorrhaged on our bathroom floor. I remember hearing Zach laughing and jumping on my bed, excited about his basketball game and birthday party later that afternoon. When I came to, the floor was covered in blood. I was scared, but I knew that I had to stay focused and awake. I was having a hard time staying awake, and I was too
weak to even walk. I didn’t know if I was going to make it.
We found out at the hospital I had lost over five units of blood. While I was in the hospital, my mother spoke to a friend
of hers that had connections with Vanderbilt. She wanted to know who I should see there. As my mother, she wanted what was best for her “baby” – just as I now want what’s best for my “baby.”
Vanderbilt soon 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.” I have been to a lot of teaching hospitals in my life, and some of them have made me feel like I was their show-and-tell science project. Vanderbilt has never made me feel that way.
I have had way too many surgeries, procedures and
treatments to count. These days if I am asked on a form to list any
previous surgeries, I laugh to myself and write on the form “not enough space to list.”
Right now I am living with multiple inoperable desmoids in my abdomen. One is wrapped around my right ureter; another one has a couple loops of my small bowel entangled in it.
For the past two years, I have had an open wound, and with the approval of my doctors, I’ve postponed surgery to repair it. After all the years of living with drains, being on intravenous nutrition and not being able to eat during a lot of those years, so many surgeries, and way too much other stuff, I can handle taking care of an open wound.
I have a choice for now to just enjoy my life, even the simplest things, like being able to eat. For most people eating is just something you do multiple times every day; to me eating is one
of life’s little pleasures. And down the road I will tackle that next big surgery.
Over the last few years I have shared my experiences and support with newly diagnosed patients. Recently I have been blessed with the privilege of being a part of the patient advocates at Vanderbilt and have had the opportunity to speak to first-year medical students about my case history and genetics. My hope is that through my story and my experiences, I can help patients, physicians and researchers better understand and deal with this disease. I have always felt that if I can help at least one person, then everything I have been through is more than worth it.
The fellow survivors and family members I have met through this program have inspired me with their strength and dedication. I am honored to be a part of this wonderful group of people and to help spread the word about proper screening – not only for people with family histories or genetic predisposition to cancer, but everybody.
Colonoscopies and genetic screening may sound scary. But, when I speak about the importance of these life-saving measures,
I use my story of being a tiny 8-year-old little girl having my first scope. I tell them that if a little 8-year-old girl can handle it, then surely they can.
Despite the pain, worry and “hassle” of dealing with this condition, I am happy to be here. God didn’t make a mistake on me.
I am exactly who I am supposed to be.
Those many “moments that have taken my breath away” – both the joyous ones and the heart-wrenching ones – are all together a part of who I am today. My hope and prayer is to make a difference, love deeply, and to enjoy every moment I am here.
In my eyes that is a life well lived.
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