Thursday, March 26, 2015

A Mission for Early Cancer Detection


This is a guest post by Daniel Shockley

My name is Daniel Shockley, I reside in Hawaii and retired at age 43 from the Navy in 2003 after serving 22-years on active duty. My last three years were spent while deployed to Middle East in direct support of OPERATION ENDURING and IRAQI FREEDOM. Fast forward to May 2012, I underwent my first colonoscopy that was scheduled at age 51. The procedure was performed by Dr. Fernando Ona of the GI Clinic at Spark M. Matsunaga Veterans Affairs Medical Center, Hawaii. Approximately 100 polyps were discovered throughout my colon, rectum, and anus. A large mass was found in my ascending colon causing an 80% blockage. Based on these findings I was immediately referred to Susan Donlon, Certified Genetic Counselor, Tripler Army Medical Center (TAMC), Hawaii.  It was suspected I may have a gene mutation which can be confirmed by DNA testing.  The DNA samples were gathered and sent to a molecular oncology laboratory in California.  Approximately three weeks later the results arrived and revealed the rare gene mutation, Adenomatous Polyposis Coli (APC), which is an inherited disorder best characterized by the development of a myriad of polyps in the colon. These findings confirmed the diagnosis of Attenuated Familial Adenomatous Polyposis (AFAP), which is a variant of Familial Adenomatous Polyposis (FAP) that can best be characterized by fewer colorectal polyps (commonly 10 – 100), later age of onset of polyps (mean age of polyp diagnosis, 44 years), and cancer (mean age, 56 years).
Daniel and Dr. Henry Lynch
It should be noted, Dr. Henry T. Lynch, Creighton’s Hereditary Cancer Center, Department of Preventive Medicine, is credited with the discovery of AFAP. Additionally, Dr. Lynch is one of the founding fathers of genetic research. There are currently no statistics on AFAP. However, it is estimated that <0.03% of the global population have this condition.


Upon receiving the diagnosis of AFAP, Lt. Col. Ronald Gagliano, Chief, Colon and Rectal Surgery and Director, Surgical Research, TAMC along with Susan Donlon, informed me surgery was inevitable, as there is no cure for AFAP.  It must be noted leading up to the confirmation of AFAP and prior to the colonoscopy, I considered myself to be in good health with no indications of any problems with my colon.  Furthermore, there is no known family history of colon problems. Dr. Gagliano and Susan Donlon encouraged me to read about my condition, the type of surgery required, and life after surgery. This is when my personal research journey commenced.  My focus from the onset was to embrace this condition.  My quest was to better understand this disease and what impact it will have on my life. Dr. Gagliano recommended, based on the DNA test results, that in the best practice of medicine colon surgery is needed.  I concurred and the surgery, known as a total-proctocolectomy with ileostomy, was scheduled at TAMC.
 The surgery was successfully performed at TAMC in July, 2012.  The rectum, anus, and entire colon were removed. A large mass in the ascending colon turned out to be an 8cm tumor. The pathology report revealed the mass was a tumor and was listed as high grade dysplasia.  As a result of my surgery I have an ostomy which is a prosthetic device that collects my waste. I have adapted to this lifesaving and life changing surgery. To date, I continue reaching out to numerous organizations, both local and abroad, in an effort of sharing my experience. My mindset has been, and continues to be: I tend not to think about things I am unable to control. Medical issues I am unable to control. What I can control is my attitude and after 5 decades on God's green earth my positive attitude has brought me this far, why change now! Furthermore, I can attest that worrying is not the cause of my condition. Therefore, worrying will not make it go away. Based on my personal research of this disease, I am able to better understand my condition, overcome adversity, adapt to my new lifestyle, and persevere with my life. .
 On a personal note, I consider having AFAP as a challenge rather than an obstacle.  I continue to press on with my life with business as usual approach.  As a result I have adopted four (4) words to reflect on as part of my new journey in life as an ostomate and advocate for colorectal cancer awareness focusing on the importance of early detection:

  • Attitude = 100% (The English language contains 26 letters. If the letter "A" represents 1 and the letter "Z" represents 26 take the letters of ATTITUDE and add them up. ATTITUDE = 100) It is important to note that the word ATTITUDE is the only word in the English dictionary that equals 100.
  Having a positive attitude attributed to my successful recovery.  As a result my transition to this new style as an ostomate was with minimal difficulty. Furthermore, I believe attitude is permanent and mood is temporary. It is possible to have a positive attitude and be in a bad mood.  However, by maintaining a positive attitude it will have a direct impact on your mood and the outcome of your life. Do not let a bad mood affect your attitude.  I remind myself of this daily and try to remain positive while pressing on with my life.  
  • Faith:  Firm Assurance Influenced Through Hope (An acronym I created on my observation of the word faith)
  My analogy of the word FAITH:  Having the ability of believing in something you are unable to see, but you know it is there. Example: You cannot see the prevailing trade winds; however, you can see what affect they have by the swaying of the palm trees.  My positive attitude had a direct impact on my FAITH which allowed me to have a significantly better chance of overcoming adversity.
  • Adapt:  Attitude Determines the Ability for a Positive Transition (An acronym I created on life as an ostomate)
  My analogy of the word ADAPT:  After undergoing total-proctocolectomy with ileostomy surgery I had to adjust to this new lifestyle without a colon.  An ileostomy can be best described as a stoma.  This is a surgical opening constructed by bringing the end of the small intestine out onto the surface of the skin on the lower right abdominal area.  The intestinal waste passes through the ileostomy and is collected in a prosthetic pouching system which is adhered to the skin over the stoma.  The pouching system requires changing every 3 – 4 days.  Having an ileostomy is a transition to a life changing experience. 
  It is evident my positive attitude directly influenced my faith which directly aided with my ability to adapt to lifestyle as an ostomate. From the onset I embraced being an ostomate as a challenge rather than an obstacle or disappointment.

     Honolulu Managing Director Ceremony Proclaiming
    March 2015 as Colorectal Cancer Awareness Month
  • Passion:  My positive attitude along with my strong faith directly impacted my ability to adapt to this new lifestyle with an ileostomy.  As a result I have a yearning to share my story, the importance of colorectal cancer awareness, early detection and AFAP.  This in hopes it will be a source of encouragement and inspiration for the masses. Additionally, on behalf of the Fight Colorectal Cancer and Colon Cancer Alliance I have been asked to represent both organizations in Hawaii and request Hawaii Governor David Ige and Honolulu Mayor Kirk Caldwell to proclaim March 2015 National Colorectal Cancer Awareness month in Hawaii and Honolulu respectively.  

Governor Ige Proclamation of March 2015 as
 Colorectal Cancer Awareness Month
Proclamation ceremonies were conducted in the Mayor’s conference room (above), Wednesday, February 25 and in the State Capital Ceremonial Room (right), Friday, March 13, 2015. It should be noted, these are the first ceremonies of their kind for this campaign.



Together we can make a difference on sharing the importance colorectal cancer awareness and early detection.

Daniel Shockley was diagnosed with Attenuated Familial Adenomatous Polyposis (AFAP), a subtype of Familial Adenomatous Polyposis. Since diagnosis, surgery to remove a pre-cancerous tumor and create an ileostomy, Daniel has made it his mission to spread awareness about colorectal cancer and the importance of early detection. In addition to public speaking, Daniel also uses his experiences to advocate for legislation in support of colorectal cancer detection and treatment programs. All of Daniel's efforts can be followed through The FAP Gene Support Organization, based in England. 
Learn the differences between FAP and AFAP.




Sunday, March 15, 2015

Stress and Chronic Illness

Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

  • Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones.
  • Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
  • Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
  • Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
  • Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
  • Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.

Tuesday, March 3, 2015

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. You can read her full story at Destination X Ride.

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 proceeds donated to NORD FAP Research Fund at Life's a Polyp Shop. I hope you'll join our efforts.