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.