Where did 3 years go?!…

Little did I know when I wrote my last post, … AND THEN CANCER MOVES UP ON MY LIST OF HEALTH CONCERNS (AND WHY I’M OK WITH IT), that it would be over 3 years before I would return back to the blogging scene. Life can be a tricky game to navigate. It turns out that my father’s diagnosis of stomach cancer would be just the tip of the iceberg in a series of life-evolving events.

Sadly, just two months after my father’s diagnosis he succumbed to the disease and passed away quite peacefully surrounded by the love of his family. To this day, although sad, his passing is still the most beautiful thing I have ever experienced. It wasn’t until after he passed that I realized just how amazing of a person he was to our community … simply by doing nothing more than just being “Don”. After seeing how shocked and grief-stricken our community was by his passing, I decided to build a Memorial Dog Park in his memory. The community loved the idea and over the next 2 years I worked my butt off to raise the funds needed and it ended up being a $16,000 project. You can read about our wonderful dog park here:
https://www.facebook.com/DonaldGatesMemorialDogPark.

While still grieving and regularly travelling back home to our hometown to support our mother, my husband and I were busy designing our dream home during our evenings and weekends when we weren’t working. We are quite smitten with the final result and it is a true reflection of our personalities … much the same way as our wedding was a reflection of who we are as individuals and as a couple. In November 2013 we finally moved into our forever dream home.

December 2013 I started transitioning from my current job into a new role in my department so the next few months were a real adjustment/learning curve. No big deal.

February 2014 I had my six month colonoscopy / annual gastroscopy as part of my FAP battle, and it turned out that my condition was getting worse. Six months earlier I had only a couple of polyps and all of a sudden it had jumped to about 17 polyps in my colon with about another 30 that were too flat to be removed so they had to be left behind. Such a drastic change in such a short amount of time made my GI Specialist nervous and she recommended a complete proctocolectomy with permanent ileostomy.

colectomy

Source: http://my.clevelandclinic.org/health/diseases_conditions/hic-colorectal-cancer/fap-inherited

March 2014 I decided to get away and cheer myself up. I travelled to Fredericton, New Brunswick to visit my dear friend Kelda who was undergoing a therapy program at the Stan Cassidy Centre for Rehabilitation. Kelda had been in a life-threatening and life-changing accident in June 2012 and I had been supporting her through her recovery since then. Most of my support was through funny letters that I would write her but it was nice to get away and visit her for a change. Kelda suffered Locked-In Syndrome as a result of the injuries that she sustained from her accident. You can learn more about her story through the Facebook Page that I created to keep her supporters up to date on her status — Kelda Farrell: Breaking Out of Locked In Syndrome. Although I had been supporting Kelda for the past nearly 2 years, I knew that Kelda would be a huge support and inspiration as I navigated through my upcoming surgery.

April 2014 the most amazing thing happened! I became an Aunt!! Again, time that I could have been dedicating to blogging was consumed by visits to see the most adorable little human being.

June and July 0f 2014 was crazy busy but very exciting. I kicked off a Fundrazr Campaign with some co-workers to raise money to purchase a Functional Electrical Stimulation (FES) “Stim” bike. The month was filled with answering phone calls, driving a social media campaign, as well as conducting newspaper and radio interviews. At the same time I was running a Teespring campaign to raise money for the dog park in my dad’s memory and designed a shirt with a saying that I came up after he passed: “Those who leave this earth too early do so because they use up all their energy being absolutely awesome.”

August 2014 I went back for my 6-month scope, and it appeared that my condition had regressed slightly. Perhaps it was due to taking curcumin, an anti-inflammatory supplement that has shown to slow or reduce polyp formation in some studies. We then entered the “do we even want to have kids” debate as I wasn’t sure if I wanted to pass along my genetic condition.

During the Fall of 2014 in addition to doing research into what impact the various surgery options would have on fertility, carrying and delivering a baby,  I was also busy doing some graphic designs so I could open a CafePress shop to raise a little money towards our fundraising efforts for the dog park.

My 2015 New Years Resolution was to “Slow down enough to find time to read (and enjoy) at least one book over the course of the year”. I started out doing well with that goal (managed to knock off one book in the first 3 weeks of the year) but on January 29th, 2015 I found myself to be one of the first to fall victim of corporate layoffs when the price of oil plummeted. The next week I was due back to the endoscopy unit for my 6th month colonoscopy and gastroscopy (as if I wasn’t already stressed enough as it was). They asked “Any chance you’re pregnant?” My nonchalant response was: “Nope, I’ve been having cramping all week … I’m fairly certain my period will start during this procedure.” A few more days passed and still no period. “Geez, I don’t suppose I went through a colonoscopy while pregnant?!” I started to panic. Sure enough, 2 separate pregnancy tests confirmed it. I stressed what the drugs that were intravenously administered during the procedure would have done to my baby. Luckily, my family physician assured me that it was so early in the pregnancy that fluids were not yet transferring from me yet. Phew!

So 1) surprise Layoff, 2) planned endoscopy,  and 3) surprise pregnancy — January 2015, you were a pretty intense month!

I had been planning on coming off my antidepressant for some time and my doctor had agreed to ease me off of it. But when I was laid off on short notice, I decided to ask her to keep me on it until things settled. The next week I returned. “Back again so soon?” was her comment at the sight of me,  and my response was “Um. I think I’m pregnant.” She let out a little laugh (knowing that I would understand the ‘what else can the world throw at you after going through a layoff and a colonoscopy’ intent). I reciprocated with my own chuckle as if to say ‘I know, right?!’ Between morning sickness and cutting out my antidepressant cold turkey the First Trimester was a beast. I wouldn’t have physically been able to work. At this point the layoff was a blessing in disguise. I did start applying for a few jobs and even interviewed for one contract position as I transitioned into the Second Trimester and started feeling better. But returning to work wasn’t in the cards for me so I enjoyed the rest of my pregnancy without employment which allowed me to continue fundraising for the Dog Park and was luckily enough to officially open it during August 2015. Finally I had a little time to rest before our baby arrived 2 weeks early on September 28th. I’ve had my hands full from that day forward and it’s been an incredible 11 months so far!!

Getting to GI Specialist appointments, prepping for and going through endoscopies,  and meeting with surgeons, all with a newborn had its challenges but we were able to make it work. After a long debate we settled on the Ileorectal Anastomosis (IRA) option for surgery.

ileorectal

Source: http://my.clevelandclinic.org/health/diseases_conditions/hic-colorectal-cancer/fap-inherited

Basically now I’m just waiting for a call from the surgeon and expect a weeks notice. It’s been one whirlwind of 3 years!

So now that you’re up to speed on what I’ve been doing for the past 3 years, it’s not surprising that I haven’t had an opportunity to work on my blog. I started the blog as a means of doing some branding for the restaurant I was dreaming up in my head. Unfortunately, due to the loss of my engineering job, my dream of developing a restaurant for people with food allergies and dietary restrictions has been put on hold (and most likely indefinitely considering the decline of my health condition) as I’ll have no financial reserve to invest to see it through. It was a beautiful and vivid dream while it lasted. I expect that while going through surgery to have my colon removed, I’ll use this blog as a means to chronicle what I’m experiencing both physically and mentally… and no doubt there could be  additional dietary restrictions imposed as a means of controlling the erratic behaviour of my new digestive system.

Thanks for taking the time to read. Writing this post has been incredibly therapeutic.

xo
Krista

 

… And Then Cancer Moves Up On My List Of Health Concerns (and why I’m ok with it)

3

Two years ago I figured out that a severe gluten intolerance was the culprit of my ill health (as a side note, I’m still awaiting determination if it’s Celiac Disease). By strictly modifying my diet, my ill health improved drastically.

Just over a year ago I suffered a mental breakdown and began treatment for clinical depression. Again, huge results in my mental and physical health after I started on a low dose anti-depressant.

Now, Cancer is on the forefront of my list of health concerns that I need to keep an eye out for. Warning: This is a bit of a long story.

Remember the kids’ story “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? The particular day in question wasn’t quite as bad as that … but it was the start of the terrible, horrible, no good, very bad week.

I woke up the last Monday of March and it was just one of those days. It was one of those days where I just feel like all I want to do is sit down and cry and there was absolutely nothing that I could think of that had set it off. Once upon a time it was a regular occurrence. Now, it only happens from time to time. I’m not sure what exactly it is that spurs it on … it could be that my anti-depressants were taken too close together or too far apart. Perhaps it was related to my monthly cycle. Who knows what triggered it. I just knew that if I got up and carried on that it would likely pass at some point throughout the day and if not, my mood/state would be reset the following day after waking up after a long nights sleep.

Later on that day I had a message from my mom saying that my dad had went for an ultrasound and something had shown up. The next day, he returned for a CT scan and the results indicated that most likely one of the polyps in his stomach had turned cancerous.

This was not 100% entirely unexpected. My father has a condition called Attenuated Familial Adenomatous Polyposis (AFAP). If left untreated, growths (called polyps) can form in the colon and turn cancerous over time. A regular colonoscopy can check for these growths and if present, they can be removed at that time. My father had his first polyp show up at the age of 40. By the time that he had turned 50 the number had multiplied so rapidly that there were hundreds of polyps in his large intestine – too many to “burn off”. As a preventative measure, he had all but a few inches of his large intestine removed. The following year polyps began forming in his stomach. And similarly, they multiplied to the hundreds. At first there were talks about removing his entire stomach, connecting his esophagus to his small intestine, a process referred to as a gastrectomy . But it would be such a huge impact to his body considering that there was only a few inches left to his large intestine, and in his particular case they expected him to be on a liquid diet and probably have to use a feeding tube. They decided to monitor at 6 month intervals with the intent that they would be able to do the surgery the minute (figuratively, that is) that the polyps started to turn. He was due to go back in a few weeks for his 6 month “inspection” but over the Fall he wasn’t feeling well, having a lot of pain, and that past week he was starting to get nauseated, in addition to the other new symptoms that he was experiencing. That’s when they put him on the fast track for the ultrasound and CT scan.

I ended up calling in to work that Wednesday and said that I wouldn’t be in. I had a lot to process.

My first thoughts were just getting him through his surgery and treatments. Then I started to think about what was to come next. I thought about how his life would be affected by no longer having a stomach (I suspect I inherited my ‘foodie’ personality from him). And then it occurred to me that if I ever do get my restaurant idea off of the ground, that my dad would not be able to enjoy the food that is prepared there. And it made me sad. My dad has always been super proud of my accomplishments and I would hate for him not to experience it in its entirety.

And then my thoughts started to shift from my dad … to my eventual fate.

I, like my dad, am gene positive for AFAP. I’ve known that I’ve had the condition since I was little, due to genetic testing. Screening for polyps started for me while I was still in high school. My dad didn’t get his first polyp until he was 40. By age 50, he had the majority of his large intestine removed. I had my first polyp at age 26. The next year I had my first polyp in my stomach. So I worry, if it progresses at the same rate as my father, will I be looking at the removal of my large intestine by age 36? Or, like with his stomach, could the polyps in my stomach multiple so quickly that I have to deal with cancer and/or have my stomach removed before I hit 40? It was a lot to take in.

Then I started to wonder “What if I get cancer and/or have my stomach removed? What happens to my restaurant dream then??”

This blog has been a component of that dream and I’ve been having so much fun doing it. My blog and dream restaurant is my passion right now. It’s what drives me.

It’s funny. That Monday morning when I woke (before any light had been shed on the extent of the worsening of my dad’s health), I had read an interesting post on Offbeat Home, “I caught that dream that I was chasing. Now what?“. I could relate to the post because: 1) the writer deals with “Imposter Syndrome” and 2) I’ve also been wondering that exact same question. Despite waking up that morning feeling bad from the start, this post was just what I needed to make my bad day feel a little brighter. I felt encouraged that morning to continue after my dream.

Despite reading that post and feeling better about my bad day, after receiving the news of my father’s predicament, it fast-tracked my future-fears of battling cancer myself. In addition to that, I started to worry about what would happen if I had to have my stomach removed. Would I even want to continue to develop this blog and/or my restaurant dream if I were unable to partake in the pleasures of food? Or, if I did achieve my dream restaurant, would I come to resent it??

Then I started to wonder “What if I can no longer enjoy food? Will I become a social hermit?”

I thought about how we love to entertain and its always based on food. True to Newfoundlander form, we’ve always been known for our “kitchen parties”. For this reason, our new home is being designed with our kitchen as our focal point of the house. It’s where we will spend the majority of our time. What if I start to despise those kitchen parties because I would feel out of place because I can’t enjoy dining with my friends?

My not-so-final thought: “Should I give up on my dream?”

This was a lot to digest for one day. I felt lost and I felt like I should give up on my dream rather than face the possibility of my dreams eventually being crushed. I had an overwhelming feeling of “what’s even the point?“.

Then I received an email response to a previous request to do a guest post on my blog. They said that they wanted to do a post on Celiac Disease and Depression, and that they had found my blog by doing a Google search. I think it was what I needed to snap me back out of the funk that I had found myself in. I started this blog as a means to help others through sharing my experiences. By labelling my blog “Food Allergies Etcetera”, the etcetera portion has allowed me to delve into the topic of mental health. And I’ve gotten a lot of positive feedback from people who have read my posts related to mental illness because they could truly identify with what I had experienced, and they found that they now had someone else who knew what they were personally experiencing. So what, if at some point I may not be able to enjoy food and share in foodie experiences. Perhaps this blog will morph into something else that is useful to others … perhaps it will serve as a connection point for others with AFAP/FAP, or perhaps it will be a vessel to share my future story of cancer prevention and/or survival.

On the first Friday of April (funny how April just happens to be cancer awareness month), my dad received confirmation that, since his last 6 month inspection, he had cancer in his stomach. His GI surgeon advised that he would not be doing  the gastrectomy at this time and that chemo was the better treatment option. A referral was made to see an oncologist, to discuss chemo. Things have moved very fast and it’s already been just under three weeks since he started treatment and he is doing well with it. Other than being fatigued, he’s not felt sick, has no pain, has stopped losing weight, has regained his appetite and is able to enjoy food just as he always has. And best of all, he still has a full head of thick hair that any 58 year old would be envious of 😉. Hopefully this is an indication of the effectiveness of the treatment!

It’s been a month since that horrible, no good, very bad day … but since then, I’ve stumbled across this article about a young woman in her 20s who decided to have a gastrectomy, and it was quite positive. I also found the No Stomach For Cancer website which has a lot of valuable information, including this overview of a Gastrectomy (You’ll find a lot of useful info related to life during and after a gastrectomy. Just hover over “Gastric Cancer” at the top menu, then hover over “Life Without a Stomach” and you’ll find 4 subpages). In addition to this, I was connected with someone (who I’ll be meeting in the coming weeks) who also decided to have a gastrectomy because she knew that stomach cancer was imminent (due to genetic markers) and she claims that the surgery saved her life (in addition to many other of members of her family). I think she will be a huge resource should I ever decide to go that route in the future. As a result, I’m starting to feel that although having a future Gastrectomy would be life altering, it wouldn’t be the end of the world.

My final thought: “You know what? … this situation isn’t as bad as it sounds”

I know the information that I’ve laid out in this post is a bit much to take in … and it sounds like a sad story. But I’m not letting it manifest that way for me. I know our family can beat this. I had a bit of an epiphany moment and its really helped me to deal with the whole situation:

Everyone has their expiry dates. If my eventual fate was to be hit by a bus and killed in a months time, I’d have no idea … And would go on living as if I had years to accomplish what I want to accomplish in life, only to be cut short of those accomplishments. Now I get to live as though I don’t have all the time in the world, it will motivate me to be healthier, appreciate life more and make the best of it.

I wouldn’t come out and be as cocky to say “bring it on!” to cancer … but if it happens to me I’ll be ready for it. I live a relatively healthy life, and am consciously aware of my physical and mental states. I’ve learned over the years that I need to listen to my mental and physical needs. If something seems to be wrong, I’ll immediately arrange to have it checked out. Perhaps in the years to come I’ll be pro-active and have a partial or full gastrectomy, if it looks like it will reduce my risk of developing cancer. I’m upbeat and positive and have an amazingly huge support network in my life, including a fantastic local-gone-national Non-Profit Organization called Young Adult Cancer Canada. I’ve been supporting this group since I’ve discovered it in 2009 and take comfort in knowing the fantastic support that they give to young adults dealing with cancer. I’m not in despair by the recent series of events … I am motivated and I am ready for whatever life has to dish out to me! 🙂

Have you, or someone close to you, had a gastrectomy, been affected by stomach/colorectal cancer, or are a cancer survivor? If so, care to share any advice?

Thanks for reading. As you may or may not have noticed, I recently took a short hiatus from blogging. I have a feeling that for the time being I might continue with this break or at least not blog as actively … although there is potential for some guest posts to pop up from time to time.

Also, positive thoughts are appreciated for our family at this time.

xo

Krista