Chronic Illness Teaching Moments: Tracy's Story

This is a guest post written by Tracy Dee Whitt.

I'm sitting in an Ear, Nose, and Throat doctor's office waiting to get a thyroid biopsy. Familial Adenomatous Polyposis (FAP) is a scary disease, it takes so much away from me and my family.

I was asked about what I've taught my children about my health and health issues. I pondered this question more as I sat in that ENT office, waiting again for a test which results may change my life again. How do you tell your children you have a deadly disease? How do you explain to your kids once again why you can't walk through the zoo, today you can't jump rope or play soccer in the yard, why you can't eat their favorite food, why you can't do so much that every parent should be able to do?



The Whitt Family - No Ordinary Family

I don't tell them everything at once, I break it down, and I don't give the doom and gloom tidbits that crawl through my mind weekly (if I'm lucky).

Before sharing how I tell my kids about my disease, I need to explain a little about my family. We're different. First, we adopted both of our children, Jeremiah is 5 and Payton is 7. Because of adoption my children won't inherit my disease, which I'm extremely grateful for. If my children were to inherit my disease I would make different considerations when educating them, so for this post I'm coming from a different angle than some who will read this.

Another factor that makes our family different is our son, Jeremiah, has autism. He doesn't understand my illness and wouldn't if I explained it to him so for this post I will only be talking about my daughter, Payton, and how I've shared with her about my disease and how she's dealt with it.

I had my colon removed when I was 18 years old (I'm now 36). The removal of such a large organ has caused some issues for me and thus we've talked to Payton a lot about the result of not having a large intestine. (I say 'we' because my husband is very supportive and helps to share with Payton about what I can and cannot do, why my body is the way it is.) This has led to discussions about my disease. 

I tell Payton that I've had my large intestine removed because if I hadn't, I would have cancer. I haven't really explained what cancer is to her because I feel it would cause her to worry too much. She knows her great-grandma died of cancer (different from what I face because this grandma didn't have FAP) and Payton's intelligent so I'm sure in some way she's connected some dots. Frankly, she probably avoids asking too much because she knows the end results of the word 'cancer'.

When I get tests done, she knows about them and knows what they're for. Although she doesn't know the scope of everything, she's aware that mommy has a disease and life is different because of it.

We try not to make life too different, but having this disease and adding a child who has nonverbal autism, life is going to be unique. We try to make it as normal as possible. We are very family-focused and we try to tailor our adventures to fit everyone's abilities.

I've also really focused on getting all I can out of my good days. I only have so much each day and there are days when I don't have anything at all - I'm exhausted and in pain. On the good days I try to spend quality time with my kids. I take them often to hug, hold them, and do any activity with them they enjoy.

Overall, Payton is empathetic to how I feel but there are times when she gets tired of not being able to do something because I'm sick or because I'm sleeping. There are many times I feel guilty because I have this disease, mainly because of how it's affected me. I get so frustrated and a large part of that frustration is around what I can't do with, or for, my family.

So, how do you tell your child about your serious rare disease? It's hard, I don't know that there's a simple way to go about it, especially when it's a disease that's trying to take your life with every breath you breathe. Cancer conversations are horrible to have with children. I think the best way to go about it is slowly and simply, making terminology as simple as possible and leaving out the catastrophic information as long as you can without shutting your child out completely.

I believe that when a parent has a serious illness it can create a compassionate child. I've seen this in our daughter, but more so because of her brother's autism, and this is probably because it's something we live with daily. Many conversations center around Jeremiah's disABILITY.

Because of living with autism and having open conversations about it, Payton has become an awesome advocate for special needs. She is extremely accepting of people who are different and so loving toward others. She is also very helpful with her brother even when I don't ask a thing of her. She knows. She has an innate ability to understand that I need help with Jeremiah and she goes out of her way constantly to assist him. I think so much of who she is stems from having the family she does (both because of her brother's autism and my illness). We explain and openly talk about so much and we are also very supportive of one another.

The family I grew up in treated this disease far differently and in the end it wasn't the best for me. This disease has killed several of my extended relatives including my Grandma, she passed at age 47 when my mother was 22. My mom saw this disease take her mother in such a horrible, unthinkable way, yet she put it under the covers and didn't face its reality. She didn't have a colonoscopy until she was 39, she's extremely fortunate she didn't have cancer and the doctors were able to remove her colon and she's still alive at age 62.

However, this approach of blanketing it and not facing reality caused me to not see what could happen to me. I lived in a sort of utopia. I knew I needed to get regular colonoscopies but I didn't really understand the full devastation FAP can cause. I skipped those colonoscopies for years, probably due to my mom being fine when she was 39 and not having any other complications. I didn't understand that it's not as simple as removing every polyp. I didn't realize how fast this disease can escalate. There was a lot I didn't know. Open communication and further learning could have helped me know what to watch for.

My mom never wanted to talk about her mother's passing, in fact, it affected her so much that she hardly ever spoke of her mom, even the good times. Her death had wrenched my mothers heart so much that she wasn't even able to talk about her. Because of this I never learned about my Grandma, what she was like, what she loved to do, what her best qualities were. Nor did I really know how FAP had taken her. I didn't need to hear every detail at age 15 but as I saw my 20s passing it was something that should have been talked about. I needed to know what I'm facing.

There are some benefits to me living in that utopia but more information would have been better. For example, there's a good chance I wouldn't have done foster care or adopted a special needs child if I'd known what I know now. However, I'm so glad I did, it's been the best decision I've ever made.

These conversations are difficult and so much more for parents who have children who inherited this disease. Take it one step at a time and know that none of us are going to do it perfectly.

Tracy Dee Whitt authors the blog LovinAdoptin, encouraging and supporting adoptive and foster parents as well as those living with autism. She can be found on Facebook, Twitter, and Pinterest.

Against the Odds

When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.



Seward, Alaska

After a limited appetite leading up to my hospitalization and 2.5 days without solid food while in the hospital, my stomach has not been able to tolerate food properly since resuming a solid food diet. I have been experiencing
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.



Snorkeling in Ketchikan, Alaska

My parents and husband urged me to cancel our travel plans due to the onslaught of pain and how it would affect my travel and activity ability. And I must admit, I was uncertain myself although my stubbornness would not allow me to miss this travel opportunity I had been yearning for over the years. With proper rest and limiting my food intake, particularly during the day, I managed to complete a half work day prior to leaving for our cruise. I wasn't sure how much of the activities I'd be able to participate in nor how much I would enjoy even being in Alaska but I maintained my argument that I would be able to enjoy our time on the ship and venture through the cities and excursions as able. I would watch my food intake, rest when needed, and take Lonox and pain medications to maximize my participation ability. Some days were more difficult than others due to the stomach pain but to my surprise and relief I was able to enjoy the majority of our trip, complete all excursions, and participate in many activities.




Hubbard Glacier. My husband spreading awareness of FAP

We spent an evening in Anchorage before driving to Seward for our cruise departure. Docking in Juneau, Skagway, Icy Strait Point in Hoonah, and Ketchikan we enjoyed whale watching, a train ride through the White Pass Yukon Route, nature walks, local culture education, and snorkeling. Our last day was spent touring Vancouver, British Columbia and to my surprise I managed to walk 5 miles in Vancouver to visit the Hard Rock Casino for souvenirs to add to our Hard Rock clothing collection! We hailed a taxi cab for our return to the train station for time management and relief from shin splints and further risk of dehydration. In spite of daily stomach pain that required rest from activities aboard the cruise ship and mandatory consideration and preparations with food and medication, I thoroughly enjoyed our trip and I didn't want to return home. My soul was touched by the history, culture, and nature of Alaska leaving within me inspiration and peace.



Mendenhall Glacier Juneau, Alaska

Since returning home the pain has yet to subside to my previous normal levels and I am limiting my food intake during the day to allow myself to function with minimal pain at work and during activities. I have an appointment with my new adult GI doctor at the end of the month to review my biopsy reports from my stomach polyps and intestinal ulcers as well as future treatment. I did obtain a copy of the pathology reports stating the stomach polyps were hyperplastic meaning they were benign and not pre-cancerous polyps. My ulcers were typical and without any malignancy meaning I understand that I do not have Crohn's Disease nor did I anticipate I did although I appreciated the doctor covering all bases. During my early college years when I began developing stomach polyps my doctor provided the prognosis of stomach cancer by the time I was 30. I am less than a month away from my 30th birthday and I'm ecstatic to report that my doctor's prognosis was wrong. I may develop stomach cancer later on but not before age 30!


Icy Strait Point, Hoonah, Alaska

Navigating the Road of FAP: Jamie's Story

This is a guest post by Jamie Klapper

Familial Adenomatous Polyposis (FAP) has been a major impact on my life from the time I was very little. My mother and grandmother both had this condition as well as me. From the time I was little, I remember my mother going to doctors and having a lot of procedures. The turning point that FAP became the most evident is when my mother had her whipple procedure due to duodenal cancer and almost died from the complications. I was 9 and I spent a month of my life watching her struggle to live. She developed Adult Respiratory Distress Syndrome, fluid built up in the air sacs in her lungs reducing the amount of oxygen in her bloodstream, and was placed in a medicated coma, she stayed in the ICU unit for three weeks. I wasn't allowed to visit her during this time and my mother's cancer diagnosis was not fully disclosed to the family until later in the cancer's progression. Due to the risk of losing my mother and the prolonged separation from her, I experienced severe separation anxiety upon her return home from the hospital. My mother underwent chemo for the duodenal cancer and survived.



Jamie sporting her FAP Awareness Shirt
and I Am Strong Socks

During high school, I was officially diagnosed with FAP via blood test. The one thing I remember was the doctor asking me if I understood what he was saying, my first thought was "Yes I do, I'm not stupid". During high school, my diagnosis was kept a secret from everyone to honor my father's wishes. My father is a very private person and he felt this was a family issue that was not for everyone else to know. For the first few years after diagnosis, only a few very close family friends knew. Due to the privacy of it, I always felt that it was like I did something bad. I decided when I went to college things were going to change and FAP was not going to be such a hush-hush topic. I realized I had not done anything bad and FAP was just a part of me. I wanted to be able to have support and knowledge with the FAP, I didn't want to have to sneak around anymore. It had become difficult to come up with excuses for missing school for procedures, particularly colonoscopies due to the extra time needed for a prep day. Freshman year of college I became more open, explaining that I had a genetic disease and what FAP did and how it affected me. It felt so great to have this in the open and no more hushing around. I finally had friends who I could talk to and who could understand my struggle. I would need this support more than ever as it was during this year that my mother's cancer returned in her stomach and she was undergoing surgery to remove her stomach when liver cancer was discovered and the surgery was halted. She underwent chemotherapy a second time but did not survive the cancer this time. One of my hardest struggles has been losing my mother and grandmother to FAP, they were both very strong women who meant a lot to me. I now realized I was fighting a monster. I felt defeated without her and since her passing I've experienced a number of my own health struggles.

In 2006, I had a total colectomy with reconnection. The change from pre and post surgery has been a lot to adjust to. Right after the surgery I had every infection you could think of and I spent several days in the hospital. I returned to college going to the restroom up to a dozen times a day. I student taught and graduated from college. Since that time I've developed growths on my liver requiring close monitoring, liver embolization therapy to reduce or block the blood flow to cancer cells in the liver, intestinal obstructions, and severe chronic abdominal pain. FAP has greatly impacted my life and primarily so by taking away a normal life for me. It has been difficult that at the age of 24 I had to stop working due to the severity of chronic pain and the complications I've experienced, including frequent bowel movements requiring immediate restroom access or risk accidents. I now spend my days in doctor offices and taking medications to manage my health. I watch my friends having fun and starting families and this will never be my reality. Friends and family tell me how strong I am but I feel like I'm fighting everyday just to make it through. I mourn the life I thought I would have.

In spite of the struggles I've discovered a number of ways to help cope and live with FAP and the complications. Support in person and online have been very beneficial. I have regular counseling sessions with a social worker and enjoy various online support groups for FAP and chronic pain through Facebook. Most importantly, being open with others about my experiences rather than bottling up my experiences and feelings has made a difference in addition to raising awareness of FAP so that others down the road might have a less difficult time.

Jamie Klapper is an active member of FAP and Chronic Pain Facebook Support Groups. Like many of those with Familial Adenomatous Polyposis, Jamie witnessed the effects of FAP on her family prior to having her own experiences. Navigating through the terrain of FAP on the body and mind is never an easy task. Jamie discovered the importance of social support throughout the journey and the difference it makes for one's survival.

The Touch of Cancer

Colon Cancer Awareness Month always leads me to reflecting upon my own family's experiences with colon cancer. I've mentioned before that FAP has ran in my family for many generations and we have had countless numbers of members die from colon cancer. Although my father's family doesn't have FAP, my paternal grandmother died of colon cancer and a very beloved paternal aunt of mine also unexpectedly developed and survived colon cancer.

Growing up with both my grandfather and mother living with FAP allowed me to gain a lot of firsthand knowledge and understanding of ostomies, FAP symptoms, and eventually cancer. I realized that the majority of people weren't experiencing what my family was and yet it was all completely normal to me. With each generation of FAP in my family, the more we've gained in information and understanding.

My grandpa survived colon cancer and appeared to lead a healthy, stable life. He developed colon cancer in the late 1950s and had his colon removed and a reconnection. I have vague flashes of visiting him in the hospital in 1994 when he developed rectal cancer and underwent another surgery for ileostomy and radiation. I never saw him struggle with his health after that until the last year of his life. He didn't let his ileostomy stop him from what he enjoyed. We went on several fishing trips, hiking through the woods, canoeing and camping trips every year. My grandpa was one of the most cherished individuals in my life. He taught me indescribable amounts of knowledge, skills, and values; we spent countless days and sleepovers together. There was no one like my grandpa and in my eyes, he could do no wrong. He was a strong, independent man with a great love for the land and his country; he fought in World War II and was awarded a Purple Heart. He saw and experienced unimaginable horrors that he kept locked away, rarely to be spoken of again. He was a no non-sense man and yet he could laugh and play in the most fun loving ways with his grandchildren.


Me and My Grandpa

Then one day, the health of this robust man began to decline. It started with reflux after eating at times, this reflux continued to worsen and he began vomiting small amounts and then large amounts after ingestion. He was rapidly losing weight. He sought medical care at our local VA and was prescribed anti-reflux medication and was advised that his esophagus was narrowing causing the reflux and vomiting. He underwent procedures to place stent like devices at the opening of his stomach and within his esophagus to reduce the vomiting and reflux. This reduced the symptoms temporarily but never provided the necessary relief. His weight continued to decrease, his body was wasting away already. Unfortunately, thorough testing wasn't performed from the onset of his symptoms but instead 4 months later when he was admitted to the VA hospital. After he had his ileostomy, he was never told he should have routine endoscopies and therefore never had any performed again until this admission. Once he finally underwent an endoscopy, the true culprit of his symptoms was discovered - FAP had caused stomach and esophageal cancer. This discovery came too late, cancer treatment wasn't a viable option and hospice was elected. Over the course of the next 3 months, my parents and I visited him routinely to help provide care and spend as much time as we could with him. Towards the end of his life, his mental capacity was altered and he was succumbing to the vast effects of cancer. I watched him mistake tv remote controls for the telephone as he tried to answer the ringing he heard. The bedroom I grew up in taking naps and watching wrestling with my grandpa was now his deathbed. He was no longer speaking and rarely conveyed any acknowledgement of his loved ones around him. I held his hand and told him how much I loved and cherished him and although deeply saddened, it was time that he left this earth. He squeezed my hand and I knew my grandpa was still there trapped within that cancer ridden body. I knew he heard me and he gave me the greatest gift he could - a hand squeeze. He died the next day.

My mom was the only child of my grandpa's to inherit FAP and expected her experience to be much like his had been the majority of his life. My mom's journey was fairly calm until she unexpectedly received a diagnosis of colorectal cancer shortly after giving birth to me. My grandpa's health wouldn't change for the worse until 14 years later so everything up to this point was considered normal in our family. My mom expected to have the same surgery as my grandpa's first surgery, large bowel removal and reconnection. My parents were surprised with different news - a permanent ileostomy and very little information. Soon after my birth, my mom had her surgery and experienced a multitude of complications and nearly lost her life. Unlike my grandpa, whose struggles I rarely witnessed until the last year of his life, I witnessed my mom's struggles daily with her energy, ostomy, and frequent intestinal blockages. I've been fortunate to never have issue with food causing intestinal blockages. Yet my mom experiences intestinal blockages nearly monthly in spite of her best preventative efforts and would often require hospitalizations from the blockages. Fortunately, her number of hospitalizations have significantly reduced over the years. In 1998, she underwent the Whipple Procedure due to a precancerous FAP polyp in her duodenum. The surgery was successful but she had a difficult recovery with extreme pain and stomach issues that seriously impacted her ability to eat for an extended period of time.


Me and My Mom

My mom is my true inspiration and my hero. We experience the common mother-daughter relationship issues but I couldn't ask for a better mother. She has always been there for me, so very understanding and supportive. Because of her FAP experiences, she's able to fully relate to my health challenges. That's an incredible and rare gift a mother can give her child, especially when it comes to a rare disease. My mom let me know I wasn't alone in this journey when I didn't know anyone else outside of the family with FAP. Even in her own health challenges, I'm one of her first thoughts. When we were both simultaneously hospitalized, she chose the adult hospital connected to the children's hospital so that we could visit. As an adult, I've had the honor of returning some of the care she so quickly and willingly provides me. FAP has placed very difficult choices and tasks upon my mom regarding herself, her father, and her child and yet she faces each obstacle with an intense resiliency and quiet strength. I would never wish any health issues upon my mom but I can't help feeling grateful that if both of us were going to have health issues anyway, I'm glad we share them. By sharing this disease, she was able to teach me about the disease, ostomies, and the values I would need to develop the skills necessary to live with this disease. I would be lost without her. 

Like most families affected by FAP, colon cancer is sadly part of our family. I think of the numerous ancestors my family has lost to colon cancer and how it has touched each of my family members. The rarity of FAP, a colon cancer causing disease, is evident in each of our stories. We all experienced doctors who were unfamiliar with FAP and thought cancer stopped with the colon with FAP. Medical care and informed medical decisions were not properly provided to all of us. This lack of information and proper medical care significantly impacted us and our outcomes could have been drastically altered with the proper information and treatments. My grandfather and mother could have been diagnosed significantly sooner, received treatments at the early stages of cancer and not have experienced such risks to their lives and ultimately death for my grandfather.

This is yet another reason why research and awareness is essential for the treatment, cure, and survival of  individuals with rare diseases and cancers. The FAP Research Fundraiser was a huge success and we raised $640 to start a FAP Research Fund with the National Organization for Rare Disorders. You can now find all kinds of products with various designs with profits donated to NORD FAP Research Fund at Life's a Polyp Shop. I hope you'll join our efforts.