A Mission for Early Cancer Detection: Daniel's Story

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.

Counting on the Best

In honor of the year closing and the tradition of new year's resolutions, look back on the year and consider what you would like to be different in the year to come. Many times an individual will use this time to turn over a new leaf, start or stop a behavior, or make progress on a long time goal. I'm not drilling on the same old boring notion, rather since this is a health blog, I'm going that direction.

Has the year been a good one for health or has it been full of illness? For those of us with chronic illness, we wish for every year to have good health. Let's also take the time to add on some new or continued behaviors to encourage good health. Perhaps exercising, eating healthy, reducing stress, following our doctor's recommendations better, complying with our medication regimes for a few examples.
I believe the mind and the body are connected, an issue in one area will appear in the opposite. Not only is taking steps to protect our physical health important, but so is protecting our psyche and mental health.
With chronic illness, we may not be able to change the diagnosis or even the prognosis, but we can take steps to improve the present or delay the inevitable. That can be physically and mentally. So let's do that. Let's make everyday count, actually do it instead of say it.

This can be very difficult when we don't feel well, every step toward a goal makes a difference though. Often times the more active we are, the more our energy level increases and the better we feel physically than when we are sedentary. I notice this in myself when simply working. Periods in between jobs or during breaks, my symptoms tend to flare up even to the point that it's a wonder I'm even able to function for half a day. But when I return to work, my symptoms lessen and my body regulates itself again. Simply because I'm doing something. If you're feeling depressed and it's making it difficult to interact with others and enjoy activities, remember that even the smallest effort to return to previous enjoyable activities is a step forward. Depression sucks us into it's spiral, it affects our brain's chemical balance and we simply lose interest in once enjoyable things. Our mind wants us to stop doing things, our thoughts enable that behavior. If we change one thing - our thoughts, emotions or behavior - then the rest will change. It's a cycle and it can be broken.

Set your goal, find the information and support to help make it reality. We've all been there at some point or another and we're all there in it with each other. Together, we can make changes or continue current practices and welcome the new year with high hopes and actions.

Death Warp

In an earlier post I wrote about how chronic life threatening illness warps your mind and I started thinking about how else my mind has been warped over the years. It brought me back to an earlier realization that my warped mind has re-warped itself in the aspect of accepting death since I've married. Prior to marriage, I would have been fine dying any day, any time and wouldn't have thought much about it. I had decided if I were to develop cancer again that I wouldn't undergo any treatment again. This may sound as though I had given up on life or was extremely depressed. I had just accepted the inevitable that I cheated years before.

But something  happened, I found my soul mate and yet again some of my life views changed, contrary to what my life views had been for so many years. Life with my husband has provided new hope and new dreams for the future which in turn has led to altered life views. Although I am still adamant about being the first to die within my immediate family, I am not as ready to die as quickly as before. I believe if I were diagnosed with cancer again that I'd agree to undergo treatment, although I may not complete the treatment depending on the quality of life. I still don't believe I'd agree to aggressive treatment for any disease until the absolute end. At some point, I believe I'd defer to palliative care once the quality of life began to become unbearable. I acknowledge that of course, one can't truly know what one would decide to do until faced with such decisions. Especially as times have changed and new hope is given.
My views have changed even to the point that if I were to outlive my husband (absolutely fearful of this occurring) and we have children that I would try to continue life for our children, who hopefully would be adult children at that point if such a horrific tragedy should occur.
Even though I have new hope and dreams for our future, such life view alterations instills more fear as I may decide to fight off death longer than previously believed. The increased fear resides in the ever flowing fear of not being the first to die in my immediate family. I do not want to outlive my parents, and especially my husband. Life has been very hard for me and is quite terrifying to me. These 3 individuals are my rock, my salvation and the thought of losing even one of these most dear persons floods my heart and soul with horrified pain.
To further complicate such life decisions, I am now an adult with the decision making ability over my own life whereas as a child, when my health was at its worst, my parents made these decisions for me and I was not to question or object to their decisions or the treatments or procedures. I have more strength in my own decisions now and perhaps as a measure of rebellion or a statement of mere exhaustion, am defiant to recommended procedures or tests and if needed, may even be defiant to treatments.
Even with these life changes, I hope for the simple solutions so that I will never have to face such decisions and I will go peacefully in my sleep one night before the rest in my immediate family.
As always, we are left with only hopes in the end. Whatever our choices, some things in life are simply out of our control and we must take the best course we believe through life and hope for the best.

Warped, Skewed, Jacked Up...Whatever

Chronic illness and near death experiences have a tendency of messing with your mind, self-image, and philosophy to the point that "healthy" individuals don't understand our line of thinking, humor, and philosophies very well.

For instance, I prefer my short bowel syndrome to only having 1-3 bowel movements a day (which would be constipation for me and is extremely painful at times) or perhaps my daily goal to not each anything for as long as I can so that my stomach doesn't become upset.
I don't think any healthy person understands how one can come to such a conclusion, and at times I'm not even sure if there's even another living person that understands my perspective just because I have yet to meet or talk to someone with the same daily issues I have.

My philosophy about life and death is very warped from my health experiences. I've been surrounded by death since I was an infant and so it has become part of my life. I look forward to the day I die and I have done so since I was 10 years old because I've experienced the peacefulness that death provides. I am saddened each time I lose someone but I remember that they are now experiencing the same peace I have longed to have again and so it helps me cope. I am absolutely terrified of outliving my support system - my parents and my spouse and the mere thought of it is extremely anxiety provoking and heart breaking for me. In college my mother and I traveled overseas and I told her it would be awesome if our plane crashed into our house and killed myself, her and my father at the same time instantaneously so that we wouldn't have to live without each other. She didn't like that statement, but there's how jacked up chronic illness can make your life philosophy.

Even our humor becomes twisted and is best understood by others in the same toilet bowl as the rest of us. Other than those working in the medical field, I don't know another group of people that can make jokes about and find something as humorous as bodily functions, disorders, and health issues.  When we toil through the same issues and become surrounded by pain and sickness, we have to find something to make us laugh or we become consumed. And at least others can laugh with us. It becomes a coping mechanism for many of us and as my grandmother said, it's better to laugh than cry.
And she'd laugh at you while you were crying and in pain!

Enjoy your warped perception of life and laugh at those that give you peculiar looks for it, because  there's a large group of us thinking the exact same thing as you and you just beat us to saying it outloud.
To those healthy ones, take a swim in our community toilet bowel and you'll start to become twisted too.

P.S.  I recently had my follow up appointment after my B-12 experiment leaving my B-12 at 234 or so. During the two months waiting for my follow up appointment, I was successful on having 3 rounds of B-12 shots. A round for me is 2 cc's of B-12 and I'm supposed to have two rounds each week, so I didn't very well especially since I had 2 of the 3 rounds I completed the week before my appointment! But my B-12 was 405 this time around. My experiment also landed me back in the schedule of having an appointment every 2 months instead of the 6 month I got to enjoy the time before I completed my experiment.
One day I'll learn....right???