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.

Stress and Chronic Illness

This Post includes Sponsored Link

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. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• 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.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• 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.

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.

Bye Bye Baby

The finality of spoken words are the hardest to push past our lips, to break our silence. Once spoken, the glass is shattered leaving us only with the reality that we are now forced to accept. In our silence we may delay the inevitable until our psyche is more prepared.
In Alone Together and Supportive Lengths, I spoke about a heart wrenching struggle that I've been slowly processing and gradually accepting.

I finally have reached a level of acceptance to allow myself to publicly disclose that my husband and I have come to the decision not to attempt to have any children.

This has been an excruciating and devastating decision for me. Through this process I learned that the best choice is not always the choice you want. Those close to me know that I've dreamt about Ending the Family Cycle through IVF with a surrogate and planned for this for over 15 years. I never believed anything different would happen. I maintained an unrealistic optimistic hope and pure belief that I would have a child in this manner and it would happen. There were no ifs, ands, or buts about it...it was happening. I planned out every detail I possibly could throughout the years. I planned names, nursery themes, educational opportunities, birthday themes, godparents and legal guardians if needed, parenting styles, etc. I've had my heart set on a baby and the joys and struggles of raising a child. And now, I must say goodbye to my baby. My baby, whom I will never get to see on an ultrasound screen, hear a heartbeat, feel kicking my surrogate, or hold in my arms because this baby will never have existed within the womb or in the world. I must say goodbye to it all, to my dreams, my hopes, my plans. The baby items I've slowly collected and saved for the big day when I would welcome home my own baby, I must pass these items on to a living baby, not a dream world baby. I know all the reasons to have a child and the joys that come with a child. I absolutely cherish the times with the children in my life and the memories of children I taught and cared for throughout my educational career.

 We must let go of the life we have planned, so as to accept the one that is waiting for us. - Joseph Campbell

In spite of all the reasons to attempt to have a child, there are a lot of reasons not to as well. After extensive contemplation and discussion, I find the reasons not to outweighing the reasons to in our situation.

1. The primary reason I sought sterilization was to be able to prevent passing FAP on to my child. I survived unimaginable experiences during my childhood and I can't bear the thought of my child going through the same experiences. To have a child is a personal decision and I hold no judgments over anyone's decisions regarding their family planning. This was my family planning decision. I didn't want to attempt having a child unless I could prevent my child from inheriting FAP. As I recently discovered as well is even with the genetic counseling and IVF, there remains a minimal chance that FAP could be inherited. Any chance is too large of a chance for me.
2. Another reason I sought sterilization is that I personally am appalled and terrified by pregnancy and childbirth. I don't know how I came to have this view, but both honestly repulse me. I find pregnancy and childbirth unnatural and a twisted joke from the universe. Cabbage patch kids type development makes much more sense to me. I know this is a very strange view for most people to understand and I don't expect anyone to agree with me. It's just my personal view and this view works fine for me as I am also medically terrified of pregnancy and childbirth. Due to my abdominal surgeries, previous twisted intestine around organs complications, low pain tolerance, and short bowel syndrome I truly believe, without a doubt, that if I were to become pregnant I would actually die or I would be in so much pain and misery that I would wish I would die. I don't want to risk my intestine twisting around organs again or if I required a C-section and risking my intestine to be cut or nicked. I have no intention of endangering myself and risking failure of my straight pull thru.
3. My current health, although stable, still provides for plenty of sick days where I don't feel able to move. How am I to take care of a baby when I have no energy, am running to the restroom constantly, experiencing high pain, or am unable to move very much? It isn't fair to my husband to expect him to take on the majority of caregiving for our child. I know he would but my child would deserve both parents to be involved. And with my health, I never know when the stability will end and my health will decline or when I'll die. I don't want to leave my husband to be a single parent with a young child.
4. My husband now has his own health issues as well with diabetes. Although diabetes is a very manageable disease and we are taking every effort to manage it properly, I still worry about his future health. He is also 10 years old than me. I don't find it fair to my child to have two chronically ill parents and I don't want either one of us to become a single parent with a young child.
5. Financially we have two options at this time. We can either use our finances to attempt to have a child; an attempt that may not work and still result in the loss of our finances. Or we can use our finances to start our life goals. We want to move to our land, build a small farm and small business. We can advance and complete these life goals at a much faster rate without first spending our finances on the attempt to have a child. With my husband being 10 years older than me, we are both ready to advance our life goals.

I began this disclosure a few months ago and since then, my husband was unexpectedly hospitalized with diabetes and my energy has been focused on his health and navigating through the terrain of diabetes, settling hospital expenses, and arranging care. I'm not sure if I've come to a full acceptance yet or I've been too consumed with other crises. A flooding of peace washed over me after a dream I had about having a baby. I dreamt I had one more attempt to try the process for a baby, a last ditch effort my psyche gave me. But even within the dream, reality seeped through and the plan failed. We couldn't accomplish both goals of a baby and our future life goals. I awoke in the morning feeling defeated with the finality of the situation. With all options exhausted, my mind was able to begin to rest and accept that we had made the correct decision for us. I am more at peace now than I was when I first started this post. I haven't been breaking into tears at the mere mention of childlessness or fertility issues. I still feel saddened when I prolong my thoughts about our decision but ultimately I am at peace and no longer debating the issue.

To help me obtain a sense of closure and to welcome in positivity for our future, my husband and I partook in a smudging ceremony. Traditionally, my Cherokee ancestors went to water for cleansing. However, we didn't have access to water and decided to participate in a smudging in order to regain balance and harmony within my spirit. I invited the talented and heart touching K. Talley Photography to help us capture this moment in our lives so that I may have mementos.

 

We began by lighting a fire and giving our thoughts to the universe. I lit cedar and sage and let the flame quell itself leaving only billows of smoke. With this I cleansed myself with the smoke before proceeding to cleanse my husband. I repeated this with a mixture of sage and sweet grass. The scent of the plants filled the air and swirled about before quickly being swept away by the wind. Once cleansed, we laid the smudging sticks within the fire pit to mingle with the smoke from the previously lit fire. We meditated on our loss and what the future held for just the two of us together. I was overwhelmed with a sense of relief and loss leaving me in a melancholy state.

I clung to the scent of the cedar, sage, and sweet grass for the remainder of the day. With each breath, I felt wrapped in a blanket of comfort from the scents. We treated ourselves to dinner and spent a quiet evening together as my mind reeled around the events of the day. It was coming to a close. I was filled with a hushed anxiety, it will soon be all over and my mind will rest in the finality. This is my last step, to disclose. To shed the façade of maintaining the intent for a child. To bear witness to my soul and our future.

To view the full gallery please visit K Talley Photography

Staying Healthy

For those of us with chronic illness, our immunity is already suppressed and the risk of our health status changing due to viruses or a flare up upsetting our body's delicate balance is a threat not to be ignored. It's a constant struggle to maintain proper electrolytes even without the presence of an additional illness. The consequences of an upset balance can easily land us in the hospital. It seems like even the symptoms of a non-severe virus, such as a cold, are multiplied for the immune suppressed.

Over the course of the last couple months with my husband's health changes I've noticed my stress levels peaking and the wear of it upon my body. Although the stress of his health crises have quietened, my stress has changed focus from him to work and my dwindling energy has become more apparent. Although I am sleeping soundly, I'm discovering I'm not obtaining the amount of restful sleep I truly need in order to function properly. Most nights I awaken early in the morning and am unable to resume sleep for 2-3 hours. And even on nights without any insomnia I continue to struggle with my energy the following day. My days are long and difficult, leaving me mentally and physically exhausted and my only salvation is the weekends when I can sleep in late. The perplexing issue is my lab values have maintained their usual levels - remain anemic but not any lower than usual and my B12 is above average. My only conclusion is stress is robbing me of truly restful sleep.

I've worried about my health deteriorating due to the combination of a lower immunity, high stress, and sleep deprivation. This is definitely not something I can afford, particularly at this time. My doctor, advocating for me as always, immediately suggests I reduce my work hours and offers to help me do so medically. My fear is that full time employment will no longer be an option if I can't find a way to maintain my health. I nearly required hospitalization after my first attempt at full time employment several years ago due to the effects of stress upon my body. I've survived full time employment since that time and I want to maintain that ability.

We can help to reduce our risk by controlling our stress and boosting our immunity. And the Immunity-Boosting Guide by the lifestyle blog Fix.com couldn't have appeared at a more opportune time. I had been placed on a special diet and supplements to cater to my electrolyte imbalance during the rough years of my health. At the time I tracked the essential vitamins and minerals in particular foods so that I could incorporate them into my diet regularly. Since that time I've forgotten that wealth of information and the Immunity-Boosting Guide sums up a lot of this information and tips in one infographic to help reduce illness risk while naturally boosting our immunity through food and behavior.
Granted, anyone with a bowel disorder and who has gone through abdominal surgeries needs to be mindful of foods that may risk an intestinal blockage or excessive diarrhea. Review the UOAA Diet and Nutrition Guide for further information.
I hope you'll find both sets of information helpful for your arsenal in maintaining health and reducing further health complications.

What FAP Means to Me

We are all faced with at least one event, one experience that shapes us, changes us, and forever transforms us. It etches out a path, trailed with the obstacles and joys that may stem from our transformative experience. We're drawn to this path like a moth to a candle, we may fly elsewhere but we are always drawn back.

Familial Adenomatous Polyposis is that transformative moment that lasts a lifetime for me. For someone unfamiliar with FAP, it's hard to grasp the full meaning of what FAP is and how it changes a person. FAP is more than a mere chronic illness, it is more than a lifetime of coping and managing a disease. Every aspect of one's life is touched along with the potential for generational changes. In the midst of the horror that is FAP, inspiration and goodness is able to sprout. These buds provide deep wells of strength, compelling us to forge on, lighting our path.

I've shared my struggles with FAP throughout this time; the new and old challenges, haunting memories, overwhelming fears. There's more though to the true depths of FAP, it's easy to overlook as it's overshadowed by the medical, the now that constantly berates us for our attention.

FAP is my disease, it is what makes me me. I own this disease, I know nothing different. I am the last known in my family to have inherited this disease. I come from a long line of FAPers and I'm not sure if any of the descendants of my great uncles and great aunts have FAP as the family has lost contact. As a child, the only individuals I knew with FAP, who were like me, were my grandfather and my mother.

FAP is my taker. I endured the constant barrage of death taking loved ones since I was an infant but I was to be surrounded by FAP as well. Not only was FAP within my genes but it was attacking my mother while I was developing within her womb. My life was to be intertwined with the mixture of death and FAP in a twisted poetic sense. Shortly after my birth, my mother discovered she had stage I colorectal cancer. At 3 months old, I nearly lost my mother to FAP and the cancer it brought. Real or not, I have always had the vision of myself as an infant sitting or lying atop my mother's stomach while visiting her in the hospital as she fought for her life. Years later FAP took my grandfather from me - he survived colon cancer but decades later developed stomach and esophageal cancer courtesy of FAP.
FAP doesn't end with the removal of the colon. The polyps often spread, we're at risk of associated cancers and other complications. There is no security with FAP. These complications limit my everyday life. Food and activities are my enemies, easily upsetting the delicate balance of my stomach and my body. Stress and lack of sleep aggravate my symptoms further creating obstacles. Everyday is a new day, a new race for the end of the day onto the next. No longer do I have easy choices, I am forced to make some of the most difficult decisions I have been faced with and as a result long time dreams have been stolen from my grasp. I can no longer think of the present only or what I want, I must take into consideration the greater good for the long term. Decisions I am still preparing to disclose that have ripped apart my heart.

Somehow, FAP has also become my giver. In the course of changing my life with ongoing medical issues, trials, and even near death, it sent me on a road that I'm not sure I would have traveled without the guidance of FAP. Amidst the landmines, FAP gave me a beaten path that led me to a beautiful oasis. I couldn't be more grateful for the treasures of my life. I have found blessings around every corner - through my parents, spouse, friends, school, and employment. FAP gave me a compassionate understanding, strong will, incredible sense of determination, and need for security. This combination has driven me throughout my life to conquer my goals. I have managed to achieve the goals I set forth and continue efforts to reach new goals. My doctor, parents, and I were uncertain of what my body would withstand. Without disability accommodations with my schools, I wouldn't have been able to complete high school or college as scheduled. My first attempt at full time employment was a failure; the stress crippled my body. I will never forget the lessons I learned and the skills I gained. With each trial, each failure, and each success I withdraw information about myself necessary for my survival so that I may try again and reach higher. FAP even shaped my career, steering me into the medical field with the intent of improving medical experiences for others. I am amazed by where I am in my life now. Although I would have easily made it here without FAP, the journey is that much more beautiful and triumphs that much sweeter because of the obstacles set forth by FAP.

In spite of my triumphs, FAP and fortune are not always so kind and can change directions without notice. We can't be safe guarded forever from the complications of FAP. Many are lost to the devastation of FAP and there will be many more. This is not an easy battle to win and we are at a disadvantage due to the rarity of FAP. Too many of us have doctors who are unfamiliar with FAP and attempt to lead us in the wrong directions in our care. I have fought to end FAP in my family. Now I would like to expand my fight and join the ranks of others battling to end FAP for future generations, prevent the development of colorectal and associated cancers and reduce or eliminate the other risks and complications for present FAPers.

It's these personal touches and steering by FAP in my life that led me to launch the FAP Research Fund Fundraiser. My hope is to launch this fundraiser regularly in partnership with National Organization for Rare Disorders. I have had the life long goal to change the course of FAP so that others close to me may not suffer as I have, I take this hope to the community now. As a community, we are stronger. As a community, our impact is greater. I ask you to join me so that we may fight along side one another against this disease.



www.CafePress.com/LifesAPolyp

One Real Wish and One True Fear: In Support of Cancer Prevention Pharmaceutical’s FAP Clinical Trial

This is a guest post by Travis Bray, Hereditary Colon Cancer Foundation.

Growing up with Familial Adenomatous Polyposis (FAP), for me, meant growing up with an intimate knowledge of my own mortality. I never met my paternal grandfather who died at the age of 36, but the legacy of his death was significant. My father grew up thinking he, too, wouldn’t make it past 36 and lived his life accordingly. As such, he, perhaps unwittingly, passed this notion on to me. At 37, I joke that I’m living in ‘extra innings.’ To quote Skip Carey, the beloved announcer for the Atlanta Braves, it’s ‘free baseball’ from here on out.

Travis successfully tackling the terrain at the Canyons

I live my life with one guiding thought…Every day, I wake up and think “Am I enjoying life?” If the answer is no for too many consecutive days, I begin to make changes. Living with a truncated lifespan, or at least the perception thereof, forces me to live in the moment. I don’t have a savings account because the thought of ‘living until retirement’ is foreign to me. Instead, I capitalize on everyday. I appreciate what I have and continuously strive for what I consider the ideal life. It was easy for me to turn my back on my PhD in Chemistry, leave research, and start the Hereditary Colon Cancer Foundation. I scoff at the conventional 60 hour work week and am fine making less money if it means I can enjoy every day more by doing so. 

I should mention here that the perception of a truncated lifespan is a reality I created. The truth is that, with proper screening and treatment, any person with FAP can live well into their 70’s and 80’s. I would have never believed that had Dr. Randall Burt himself not told me so last year! When he did, I went from thinking I’d die in my 50’s to realizing I can die an old man! Dr. Burt gave me in an instant what no other doctor has…20 extra years!  

To further illustrate my approach to life, I learned to snowboard when I was 36 and became an instructor at 37. As I write this, I am working remotely in Costa Rica while learning to surf in the mornings. My wife, Shawnie, and I live an active life with no intention of slowing down anytime soon. As much as I appreciate life and focus on building a life I can enjoy continuously, not just on the weekends, I have one real wish and one true fear. 

Travis working at a local coffee shop in Costa Rica

My one real wish is that I could have had my colectomy at a later age. I was 15 years old when my colon was removed and, as a result, I have a j-pouch that fits in the cavity of a 15 year old boy. Had I been able to wait 5-10 years, my body would have grown and matured more and my j-pouch could have been bigger. Anyone with a j-pouch knows what the effects would be but, in short, it would be really, really nice if I could reduce the number of bowel movements I have daily and extend the time between to, say, 8 hours. 

My deepest fear is that I’ll one day need a whipple procedure. My father, uncle, and cousin all had this horrible surgery and it grossly decreased their quality of life. I link my father’s early death (age 54) directly to the effects of this surgery. My uncle was extremely ill for a year because of a nicked pancreas during the procedure. Its invasive, life altering, and scares the hell out of me.

This wish and this fear are exactly why I, as an FAP patient and Founder/President of the Hereditary Colon Cancer Foundation, wholeheartedly support clinical trials that test therapies which may prevent the effects of this disease. As of today there are several trials seeking to reduce or eliminate the growth of polyps. You can learn more about these by doing a search on ClinicalTrials.gov. If any of these prove to be successful, children might be able to wait until adulthood before getting a colectomy. 

The trial I want to highlight today is Cancer Prevention Pharmaceutical’s ongoing Elflornithine (CPP-1X)/Sulindac clinical trial. CPP-1X is an experimental drug that is showing evidence to reduce polyp growth and Sulindac is a drug similar to common NSAIDS that has also shown evidence to reduce polyp growth but has yet to be approved by the FDA for this use. Why? Because I’ve spoken at length with the founders and I believe in their mission. They used to work on the other side of pharmaceuticals - working on the treatment of cancer. But they came together to form this company for one reason - to PREVENT, rather than TREAT, cancer in people with FAP. As you can imagine, when I heard their story, I felt relieved that someone out there was fighting for us.

Today, this trial is taking place at eight US/Canadian sites and four European sites. Their drug pairing aims to prevent polyps from growing in the colon. Will they alleviate the need of a colectomy for FAP patients completely? That is to be seen. But the 15 year old kid in me would love to see this treatment help other FAP patients wait until young adulthood to need a colectomy. 

CPP makes no statement as to the efficacy of preventing polyps in the small bowel. But the pathway to polyp formation is very similar in the upper and lower intestines and, for this reason, I’m hopeful that the treatment will also be effective for polyps in the small intestine. 

This clinical trial may be the very answer to my one real wish and one true fear. But to know for sure, the trial needs participants. If you are interested in reading more about this trial, click here. If you do participate, we’d love to hear about your experience.

 Email me at TravisHBray@HCCTakesGuts.org or call me at 334.740.8657.

Before I sign off, I want to offer my deepest gratitude to Jenny Jones Bay and “Life’s a Polyp” for giving me the opportunity to guest blog about this trial.

Take care and stay strong! 

Travis Bray
Founder, President, and Previvor
Hereditary Colon Cancer Foundation

Travis Bray was diagnosed with Familial Adenomatous Polyposis (FAP) at age 15 when he underwent a total colectomy with j-pouch. Like most of us with FAP, Travis has had his own trying journey and obstacles that often accompanies FAP. Utilizing his own experiences and skills, in 2012 he founded the Hereditary Colon Cancer Foundation with his wife, Shawnie, to help fill the many missing gaps in care, support, research, and education surrounding FAP.

Shawnie and Travis Bray

Treatment Choices

Individuals share a vast depth of life views of varying degrees that include differences of opinions and needs regarding medical decisions and choices. I find this to be the beauty of the human experience. We have been given the gift of free will and decision making.

So in medical situations, how do we know what the right treatment choice is?

With any medical diagnosis we are typically presented with treatment choices and we must decide what is the best choice for us. Even when all factors are the same among individuals, a particular treatment option may not be the best choice for another individual.

Life experiences, spiritual beliefs, world views, prognosis and current health all contribute to the medical decision making of an individual. There is a lot to take into consideration to determine the best option for a particular person. It's common to see others within the health groups asking about others experiences with various treatment options for FAP as they debate the options provided by the doctors. Learning about the experiences of others, knowing what to expect with each treatment option is a great way to gain more information than a doctor is able to provide.

I didn't know anyone else outside of my family with FAP when I was a newly diagnosed child. I don't think the different treatment options of ostomy, jpouch, straight pull thru, etc. were discussed with me. I was 8 and I can understand why I wouldn't have been included in the discussion. However, as I grew I regularly inquired regarding other treatment options to reverse the ostomy I had been left with after serious complications courtesy of my surgeon. My quest for a different solution was understood by my doctor and when the opportunity to give it a try became available, my doctor and my parents left the decision to me. I was 14 when I started preparation for an ostomy reversal with a straight pull thru. I knew the risks, a reversal may not be possible and with any surgery there are always risks of death or other complications. Fortunately for me, my parents and my doctor respected my desire and my need to take the risk. A reversal was all I wanted, it was all I had thought of for the previous 6 years. I think my doctor and my parents realized the depth of my anguish and despair, I had to take this risk or I would never be happy not trying. Following a successful reversal, I was faced with several years of torture trying to maintain my straight pull thru due to adhesions. There were times I was ready to stop the fight for life. There were times when I knew my body was about to give out on me and I said my goodbyes to my parents. I survived through it all though.

And when I look back, I wonder...if I had said to stop the fight and let me rest, would my wishes have been respected? Would I have been given the same respect and support I needed for my previous medical decision if I had made the treatment choice of not receiving treatment?

I hope my parents and my doctor would have respected my wishes. I believe everyone has a point when too much is too much to ask anymore and a person knows what that limit is when the limit is being reached. I believe in freely making our own decisions and respecting that.

I am filled with terror, mental paralysis, and I experience a rapid heart rate with the mere thought of being forced to undergo a medical treatment I did not choose, like the young lady court ordered to receive chemotherapy. I've spoken about a very dear, close friend of mine who committed suicide due to his experiences with Fibromyalgia and Ulcerative Colitis. I wish that he hadn't taken his life, I miss him everyday and I will forever cherish the time we shared and memories of him. I, however, cannot be angry with him, I cannot resent him for his choice. I wish his choice had been different and I wish we all could have helped him more. But I understand the desperation, anguish, and pain that he must have been experiencing that he tucked away. And because I understand, I can't do anything but miss him and wish I could change it all for him. I am not by any means saying that had I been aware of his decision to commit suicide that I would have encouraged him to do so. I'm simply saying, I understood his struggle. And that's something everyone benefits from, to be understood.

I've been blessed with fairly stable health over the last few years and I hope this will continue. When my health changes once again, I'm not sure what choices I will be faced with or what choices I will make. All I know is that there are choices that I don't want for various health conditions and I am counting on my wishes to be respected. I completed an Advanced Directive with detailed instructions pertaining to my wishes many years ago and I regularly discuss my medical wishes with my family.

Medical decisions are never easy and living with those decisions isn't always easy either. There will always be risks and side effects of any medical decision we choose. We have to know what we believe is the right choice for us.

Lessons Learned

I love reading the lists of others about what they've learned from illness, things others should take into consideration about others with illness, or things they wish they had known first. Fortunately, not everyone knows what it's like to live with a chronic illness. Not only do these lists help others better understand what we live with but they also help us by reminding us of our strength, our knowledge, and the forgotten lessons that have helped shape us and make us unique.
I think it goes without saying, again, that one lesson learned by any type of chronic illness is that we reach a whole new level of appreciation and cherish of the good times, the good days we have. So I'll move on to my lessons learned.

1. Chronic Illness Changes You
There's no way around it. The degree of change is affected by your age of diagnosis/symptoms onset, treatments and experiences you've had, support received and so forth. I'm not sure what I would be like if I didn't have FAP, I was diagnosed so young that I don't have a grasp of who I was before. There wasn't time for a clear change. But there are views I have now that I don't think I'd have without FAP and the accompanying experiences.

• I wouldn't be terrified of pain. With everything I do, I think about how to avoid or minimize risk of pain.
• I would take more risks in life.
• I would likely have been a veterinarian. This was my passion as a child, until I became sick. Ever since my first surgery, I can physically feel the pain of others just by others talking about their experiences, seeing painful events, imagining pain. I can't bait a hook without feeling the bait's pain of a hook going through its body.
• I would be more independent. I am extremely dependent on the emotional support of my parents and I found that same support with my husband.
• I would be more trusting. I don't trust medical providers easily due to experiences with my 1st surgeon and his residents. Providers have to prove to me first that they aren't trying to kill me and that my needs and fears are understood and respected before I feel comfortable.
• I may have been open to moving. I felt unable to leave my home state, my parents and my doctors due to my unstable health. I turned down opportunities to study abroad, marrying military sweethearts, out of state schools, careers that would have required relocation.
• I would travel without excessive worry, I love the thought of exploring the world yet my health needs cripple my adventurous spirit due to the demands on my body and the demands my body has.
• I would likely have engaged in the typical teenager behaviors and rebellion. My health, my ostomy, my fears of others finding out my secrets...it quite truly kept me out of trouble.
• I wouldn't struggle with depression or have a death orientation. Perhaps I wouldn't strongly support euthanasia. Maybe I wouldn't overly empathize with someone's wish for death, even suicide.
• I wouldn't be morbid. I actually take great pride in my morbidity. I love the perplexed, startled reactions by nonsickies and the camaraderie of morbid thoughts and humor shared with other sickies.
• I may not have anger problems. I've lived with true hate, resentment, and anger stemming from the incompetence of the surgeon and residents that led to life threatening, life altering complications.

2. Extreme Polarization of Life and Risk Taking Behaviors
We all cope differently, especially when presented with trauma and life changing events. The way we cope I've found falls into one of two categories. Either the person flirts with death to the point of recklessness, taking every challenge or risk available in order to live life to the fullest and get the most out of life. Or the person becomes paralyzed with fear and the need for safety, rarely taking risks, calculating every move out to the last detail in order to minimize risk. I definitely fall into the second category. I'm paralyzed with the fear of any type of pain. The risk of physical or emotional pain is almost unbearable for me. There are a lot of things I'd like to do or to try but I won't because the risk far exceeds the activity for me.

3. Redefining What's Trivial
Have you ever listened to a relatively healthy person complain about something and all you can do is chuckle to yourself? Not to be rude but I have.
When others complain about having to take medications, I can't help but chuckle. I've been responsible for taking my own medications and carrying them with me everywhere since I was 10. I have taken extremely small and extremely large pills with several doses a day. I'm such a great pill taker that I typically take all of my pills in one gulp.
I thought my professors overreacted when I would notify them that I'd  be in class that day but I had to be hospitalized after and  I wasn't sure when I'd return to class again. Each time they asked why I needed to be hospitalized and why I didn't go right away, I truthfully answered that I was bleeding internally again. They would urge me to skip class that day but I didn't budge. Waiting 1-2 hours wasn't going to make a difference, I might as well get that class over with, get my homework and get packed and cleaned up for the hospital so I'd be more comfortable and less stressed about school.
A friend of mine became accustomed to his stoma prolapsing and it wasn't unusual for blood to fill the front of his clothing. He didn't understand the horrified looks of strangers noticing his bloody clothes.
Such things are routine for us, they're our new norms. I'm sorry that our norms confuse and shock you and I'm sorry that your confusion and shock makes us giggle.

4. Living Your Life Impresses Others
Every time someone finds out a bit about what I've survived and what I live through daily, I'm given some type of congratulatory, awe inspired response. And I never fully understand it. Don't get me wrong, those with chronic illness survive some really rough cards in life and that is a thing to be celebrated. I am by no means poo pooing what someone lives through. But I don't see myself as doing anything special, I'm just living my life the best way I can just like everyone else. Because I'm just living my life, although I appreciate it, I often feel embarrassed when someone pays me complimentary, congratulatory, awe inspired words. I don't feel like I deserve it really because I don't see myself as a strong person or anyone special just for living with FAP and the complications it has caused, that's just my life.

5.  You Lie Everyday
The whole "but you don't look sick" deal, it comes about even more because we're master deceivers now after living with chronic illness. How often do you answer with an "I'm okay" or "I'm fine" when asked how you're doing but you're really thinking "I want to die right now, my stomach hurts, I don't have any energy, it hurts to walk, and I'm about to break into tears at any moment" but you don't really want to spill all that for various reasons. Only those who really know us or are perceptive to others realize when we're really not okay in spite of our protests. I do this everyday just about. My family has gotten really good at picking up when I'm lying about how I feel. They know if I'm not really talking, I'm not smiling and laughing, I'm just sitting there taking up space and I'm curled up in a chair, hand on my stomach...I don't feel well at all and I really just want to curl up in a ball even though I'm answering "I'm okay".

6. Your Body is Your Enemy
Your body isn't your friend, your body betrays you at every turn possible. Your body often hates food and only wants to sleep. It doesn't like you having fun, participating in activities, or doing what you want. It fights you and sometimes you pay for going against what it wants.
The "Keep your friends close but your enemies closer" rings true with your body. We know our bodies better than anyone, we are forced to learn what our triggers are and to anticipate the body's reactions to what we do. With a rare disease such as FAP, it isn't uncommon for the patient to know more about FAP than the doctors because not many are very familiar with FAP.

7. Spontaneity is Rare
There's so much to take into consideration with everything we do it becomes hard to do anything spur of the moment. For me to participate in activities, I have to plan out when and what I'm going to eat. I have to take into consideration where restrooms are located and if they're not available, what is my back up plan. Even intimacy often requires forethought, talk about a mood killer. And even when you've taken every precaution you can in order to participate in an activity and you think it's all working out, it's not and you have to change the plans at the last second.

8. Proof of Illness is a Real Pressure
Chronic illness isn't always visible and symptoms can change in an instant and can change back again in another instant. The roller coaster ride of the illness leaves us feeling like we must prove our illness to others. I worry that my friends think I'm just ditching them, my boss thinks I'm lazy or I just want an early day or weekend, or doctors will think I'm seeking attention or medications. I want to be taken serious and I do my very best in everything I do but sometimes my best isn't a lot. I worry that I'll be fired or doctors will turn me away.

9. You Will Be Discriminated Against for Life
At no fault of your own, you will be discriminated against throughout your life from now on. It may not happen on a regular basis but it will happen. It may not be a large act of discrimination either. Your needs and your health will be dismissed. I've had hateful notes left on my car for using my handicap placard. A friend of mine has been denied assistance  with boarding a plane even though he requires a walking cane. I remember an ostomate was banned from a hotel for his ostomy leaking onto the bed sheets during his sleep even though he voluntarily paid for new bed sheets. Doctors dismiss sometimes, writing us off as attention seeking, medication seeking. My primary care doctor, first surgeon and his residents, and the ER staff at my local Children's hospital all dismissed my health and my needs and it nearly cost my life.

10. Health Will Never Be Taken for Granted Again
You not only gain a brand new, deep appreciation for good health and good days but you also gain a deep anger and concern for others when they ignore their health. We all know someone who refuses to see a doctor in spite of complaints of an ailment. My husband would complain of various ailments but never would go to a doctor, he always had an excuse and he was healthy until he developed Type I diabetes and landed in the ER after a blood sugar of almost 1000. He was lucky he didn't die. Within the medical field, I encounter countless individuals who have not managed their diabetes or high blood pressure resulting in kidney failure. It's one thing to know the risks of foregoing medical care and it's another to refuse care with the thoughts that you're invincible. When others complain of serious, ongoing ailments yet refuse to consult a doctor, I am filled with a sense of anger and desire to shake the person. As a sickie, we know that not every symptom can be shrugged off and symptoms can quickly turn serious and deadly. It's best to take care of a health issue  now before it turns into a larger issue later. Save yourself pain, hassles, and higher costs.

We learn countless things, big and small, everyday with chronic illness. Sometimes it takes us longer to learn and accept lessons. Life is a journey and chronic illness is a forever changing teacher. The more willing you are to learn, the better you will adapt to this journey.
What are some of the lessons you've learned courtesy of your chronic illness?

Let Me Have It

It's been a rough few days for me in my new additional role as caregiver. My husband and I have been presented with  new challenges since his diagnosis of Type 1 Diabetes and I've encountered my own difficulty adapting.

I can't stop myself from thinking that it should have been me. I should have been diagnosed with the diabetes. What's another medical condition for someone who is already chronically ill? I'm much more adapted to handle medical conditions than my husband. I've had more practice, I've been practicing since I was 8. I'm already the patient, he's already the caregiver. He's a great caregiver, I'm a decent patient. Let me have it. It'd be much easier for me to have it, to adapt to it.
I hesitated for days to share these thoughts with my husband. They rambled through my mind, they weren't going to stop. I reluctantly shared these thoughts with my husband, I try to shield him from anything that I think could possibly make him feel burdensome or distract him with additional worry. Why? Because it's the nurturer within me, I don't want to add to his problems. He doesn't need to deal with my problems on top of his own. His unselfishness is beyond belief as he tells me I have enough to deal with, I don't need another medical issue and at least his is more manageable than my own. Perhaps there's a part of me looking for a different end game for myself than that which FAP brings.


Waiting for January 1st to roll around was hard, the date for his insurance to become effective and we would be able to fill his prescriptions at greatly affordable costs compared to the prices without insurance. The affordable prices though would have to come through the mail order pharmacy, which means increased wait time to receive the much needed medications. The hospital's diabetes nurse sent over his prescriptions electronically. Electronically is a wonderfully speedy innovation to quickly obtain a script. My only issue is that without a paper script that I can see, I can review and I can submit myself...well it takes more control away from me. My severe mistrust of providers and my own paranoia of what could go wrong in various scenarios has left me with a strong need for control wherever, whenever I can have it. I've had nurses submit scripts without my review that cost me large amounts of money, without providing the brand name or the correct number pills. A misfortunate experience as I couldn't refuse the medication due to receiving it through mail order rather than local pharmacy. Once it's delivered, it can't be returned with a refund. So you can imagine my mental hand wringing as I patiently waited to confirm the correct script was sent and received by mail order. Let me have the script.


But that's not the only nerve wracking challenge we'd encounter this week. When I called to confirm the insurance had been approved and scripts received, to my horror I was informed that his insurance is still being manually reviewed due to the late enrollment so close to the end of the year. I broke into tears while on the phone. Insurance means everything to me. Without my insurance, how would I have been able to survive my own health issues. I wouldn't be able to afford my medications, my medical care. My personal attachment and dependence upon my insurance left me paralyzed when we discovered my husband's insurance had been cancelled in 2013 and we hadn't received notices. And now, we had to wait even longer for his insurance to be approved. Sure, it would retroactivate to January 1st, but in the meantime I'd be faced with high out of pocket costs if his insulin were to run out before insurance would be approved and mail order insulin would be received.
Waiting is paralyzing. Waiting to find out if my hardship application for the hospital will be approved. Waiting to receive bills that don't have hardship applications available. Waiting to find out what we owe after it's all said and done. I'm scared to spend any money, even for essentials. Everytime I have to make a purchase, I think Will I need this for a medical bill we have yet to receive?


I just had to think of the additional issues that could surface, and they did as if summoned. That night, my husband informed me that his insulin would run out by early Tuesday. Not enough time to receive insulin through the mail, at the more affordable price. The insulin he currently uses would be too costly to continue, even with a future reimbursement for the out of pocket cost.


The local hospital pharmacy had called to send an assistance application for medications earlier in the day, before I knew about the rapidly approaching need for more insulin. But it's Friday night, my help options are running out. This is an urgent matter, it's urgent for my mental sake. I need this resolved and I need it resolved fast. I slept through the night with nightmares about our obstacles, my mind went through every possible scenario regarding insulin and insurance. Each scenario passed without resolution. I'd awake and it was on to the next attempt in my sleep to solve the issues. Every moment awake, I was terrified I'd forget to try outside of my dreams once the morning came. Now I had a mental to do list to maintain amidst the nightmares, the fears, the terror. Six hours this went on. Until I finally broke. I have used poetry as a therapeutic measure after surviving the nightmares of my first year following the first surgery. I hadn't written any poetry in over a year though. My  inspiration tends to come during the night, the time I'm desperately trying to sleep and I mistakenly think the inspiration will remain through the night and following day for me to listen. But it doesn't. My muse tries to teach me either I write then or I won't be able to write. This time I  listened and I wrote.

Mine Alone

My mind wanders, reeling with fears of the worst
Time passing slowly, dauntingly
If only life could jump ahead
Questions answered, solutions found, worries quietened

Strength tested and pushed to new limits
All that was known, turned and changed
Unfamiliar and trying, time is only sparingly vacant
Adapting, learning, struggling unceasing

Fear becomes all consuming whilst the mind wanders
The load weighs heavy to shelter my new charge
Mustnt show my lapses, must remain strong beats the song
Heart fights the battle, distracts the mind, and hides the difficulty

Are these fears shared with my charge, I dare not press
Guilt accompanies such curiosities, how dare thee ask
Shielding from extra burden, enough is there
This is mine to bear, a chance to return all the care

But it wasn't enough, I've been trying to maintain a strong face for my husband. My own fears keeping my heart caged, guarded, stifling my own needs to keep my husband's wellbeing safe. Or so I thought. The dam was failing, my muse had pushed me. I couldn't maintain my silence anymore. I hate waking him during the night, I hate robbing him of his much needed sleep. I had to share all my worries and risk him thinking I viewed his new medical status as a burden. I released all my emotions and wept in his arms. Panic began to set in as my mind took me to vials of insulin rather than flexpens. I can't give a shot. He gave me my B12 shots. Can he give himself a shot in the arm? The strength of a single thought is overwhelmingly powerful. One thought can push one over the edge. My mind began to spiral with that first thought of an insulin vial and  needle. Now a new panic is setting in. I can't breathe. Normally I feel like I'm having a heart attack at this stage. But I'm not. It's different, it's my abdomen not my heart. My stomach feels like it is twisting within me. I grasp my stomach, my husband grasps me to keep me from writhing in bed as I desperately try to stop the twisting. How is this happening, it's not real. Stop! I have to stop my thoughts, I can't do this alone. I can't handle the twisting. My husband distracts me with random stories and my mind begins to ease, the twisting reducing. With my fears quietened, the twisting stopped, my emotions drained, I was finally able to sleep without nightmares.
I was so exhausted by morning, I couldn't stay awake. I slept peacefully for six more hours, my mind exhausted, unable to function without some restful sleep.


By the time I dragged myself from bed, the diabetes nurse returned my emails about our dilemma and advised of over the counter insulin. This can't be a long term solution but it can get us through until the insurance is approved and the mail order insulin can be received. 1 vial will last about a week. If insurance is approved by Monday, I can get his insulin pens by the following week.


The damage was pervasive on my psyche, every moment waiting to receive any insulin tore my mind apart. We went to the local pharmacy. Time stood still as I waited my turn. Would it be available, would they be able to help me, would it be the affordable cost I was quoted by the nurse? Breathe, I reminded myself as I shook in line. It was my turn. The time slowly passed as the local pharmacist reviewed his current insulin to match to the closest over the counter insulin. Please, please just let me have it. I beg you. Finally, the transaction is complete. I grasp the insulin with dear life. I need alcohol swabs, I survey the shelves among the aisles. I can't find it, I can't focus. I stare blankly. Panic is setting in. I hastily walk up and down each aisle, scanning each shelf. It's not working. I need my husband. The tears are coming. I need the swabs. I need to take care of him. I need to see him okay, to see solutions, to see everything come together.


Once home with everything we need, I begin to relax, to think more clearly again. I begin to focus more. I know what I need. I need the insurance to be approved and I need our first mail order to be received. Then we'll be within that routine. I need a routine established. There's safety within a routine. Unpredictability to be lessened. Unpredictability is where you're caught off guard and rattled, where you're pushed and stretched, thrown to what you don't know, with uncertainties at every turn.


I notice the symptoms. The stress, the worry is weighing too much. I'm slipping. It's so easy to slip into that dark well of despair, of depression. It's been home for so many years. It's familiar, I know it. It holds me like its own. I know what I need to do to break free of its grasp. I know all the options to fight it. I've used them all, I advocate for them all. Medication, private counseling, support groups, informal peer support. But I'm also stubborn. I'm the last to agree to start using these methods in spite of my husband's regular urging. I try it out on my own for weeks first, leaning only on my husband for support. I don't want to become dependent on any of these methods again. I spent years mentally surviving only because of these various methods. I want to survive on my own. If I can't, if I must depend then I will but not until I prove to myself I can't climb out on my own. I struggle, I fight, I push.


I think back on my own health struggles. The times I was left to fight for my life for the second prolonged period. Was it really a struggle? Was it this hard on me as the struggle to see my husband safe is now?


The memories blur over time. I remember two feelings during that time. Peace and terror. Peace came to me while I was near death. I'll never forget the serenity of being in death's arms. There is no earthly peace like that of death. Nothing as comforting. Sweet, sweet death.
And then I remember the terror. The terror brought on each time I endured, I survived a medical test or procedure. Being ill doesn't seem so bad. It was the pain that the tests and procedures inflicted that was so hard, that pushed me closer to death's arms.


I question my memories, why is the stress so much more now. Why do I almost recall my fight for my life as easy, as peaceful except for the pain. Stress. That's why. My only responsibilities during my own fights were to live and to complete my studies. I didn't have to work to live, my parents had me, they caught me financially. Now my parents would do what they could to help us, but they wouldn't be able to support us financially. I have to work, he has to work. We have to financially survive too, not just physically. There's more at stake than just physical life, it's our livelihood.


Isn't it interesting how the stage of life we are in at the time affects what we experience, how we cope, what we focus on, what our needs are. So much is affected by this, it shapes us, it changes us. How lucky I was to struggle during an earlier part in my life, when I could easily be caught by my parents. When my livelihood wasn't mine to stress about. When I could just focus on surviving.