Seven years stomachless: Annual reflections on life

Today I was fortunate enough to receive my 2nd dose of the COVID-19 vaccine. Being a Healthcare provider, we were prioritized and I am every grateful to be fully vaccinated. It seems fitting that on my seven year gastrectoanniversary I’m having another big health moment.

The past year has been a journey for everyone. Not only are we faced with the regular day to day stressors, we have an additional layer of a global wide pandemic. Here in Ontario, we are currently in our third lockdown. At this point in time, we are all pros at dealing with the lockdowns. I repainted our indoor trim as well as our shed outside, bought a bunch of flowers, went outside as much as possible, zoom work outs, and continued to keep in touch with friends and family virtually. I am also very grateful to have a toddler who brings us so much joy and light daily. I remind him of this frequently. Oh and I can’t forget my husband who isn’t sick of me yet.

Today my Facebook memories also reminded me that on this day five years ago, I was on a Caribbean cruise ship sailing off with some good friends for our first cruise ship experience. It was bitter sweet. The photo reminded me that these things will eventually return but we should never take our health for granted.

Circa 2016. Two years post gastrectomy. Still pretty skinny.

Each day I wake up, I am thankful to be alive and well. I mention this often but it still stands true. There are so many people fighting for their lives out there. The thought of getting breast cancer looms in the back of my mind and having a prophylactic mastectomy is something that I will need to consider in the future. Science is continually advancing and I am hopeful that there will be more advances to catch this type of lobular breast cancer before it is too late. Similarly, I am optimistic that in the next 20 years, there will be more advances for detecting stomach cancer so future generations will not have to undergo the prophylactic total gastrectomy. So much has already been discovered in the past seven years since I had my surgery. Many of the total gastrectomies for people who are CDH1+ can now be performed laproscopically where the recovery time is so much shorter.

We are further ahead than we were at this point last year. I am optimistic that I will be able to see my family and friends again this fall. Maybe even return to dancing with all my Zumba crew.. in person! Oh and you bet I’ll be dancing like I’ve never dance before. Look out! If it means I need to repaint my entire house to maintain my sanity resulting in lives saved….it is a small price to pay for a much larger gain. Plus, who doesn’t like a fresh paint job? Oh and you know that COVID – 15lbs that everyone speaks of….I have managed to gain a whole 5lbs! Third lockdown a charm.

I wish everyone continual good health and positive vibes. We’ve got this!

Sitting in the car after 2nd dose. So grateful to be fully vaccinated.

February thoughts/Lockdown #2 updates

Hello friends! It has been a few months since I last provided an update on what has been new in my world and to be honest, not too much. But no news is good news right? But an update is overdue, so here I am!

COVID cases continued to rise throughout the rest of 2020 and just after Christmas, we went into a second lockdown. We are now beginning to emerge from this into a colour coded system where different regions have different restrictions. Being in a more densely populated region, our restrictions will begin more strict and gradually ease off. We are in the heart of winter right now and I am hopeful that in a couple of months, we will all be outside again, doing outdoor gatherings, while the vaccination plan rolls out. My hopes are that we can have family and friends inside again by the fall.

It is wild to think that we are now almost one year since the first lockdown and in a couple of months, our little one will celebrate his second birthday. One year ago, I don’t think I would have predicted what we have experienced over the past year. I am thankful that he is young enough not to remember what is going on in the world and will likely just remember all the fun times he got to spend with his family. His first two birthdays will have been pandemic birthdays. There are times where I feel concerned about his lack of social contact throughout the past year; however, I also feel that it isn’t worth stressing about because it is what it is and many other children his age are in the same boat. Although he has missed out on various activities, he has gained a lot of family time. There is value in security.

I continue to work throughout this pandemic. People require physiotherapy and I am happy we were allowed to remain open. Although it is a higher risk activity vs. staying and working from home, I am ever grateful to be able to socialize face to face with people on a daily basis. Being an extroverted person, it has been key for my own mental health. I am also thankful I have a job during this time where many jobs are being lost.

In terms of my general health, my mammogram and MRI came back clear. Hooray! Scanxiety is a real thing and I am glad to not have to worry about it again for another year. I mentioned last post about my ongoing burping after meals and it has worsened along with food getting stuck/lump in the throat feeling so I have started the chain of events of referred back to my surgeon to discuss potential causes. I am suspect of another stricture forming. I am now almost seven years out from surgery for those who are reading and curious about potential long term effects post total gastrectomy. Lucky number seven?

Although, I have embraced the COVID 19 pandemic diet of baked goods, junk food, and increased alcohol/caffeine consumption my weight has not increased. However, I have learned that there is a HUGE difference to eating a bag of potato chips in the first two days vs. a week later.

I hope everyone is keeping healthy and safe out in your parts of the world.

36 years around the sun

Hello pandemic friends! I hope everyone is staying safe and healthy these days. I am writing to you today from the comfort of my basement. It has been six months since I made my last post. Time sure flies. I used to talk to my patients about how time is flying by and on multiple occasions they would ask, “do you have children?”, after I replied that I did not, they would follow up with, “wait until you have kids”. I could not agree more.

This past year has just sailed by. The past seven months have been a roller coaster. We all knew that a pandemic was coming eventually but I don’t think I ever took it too seriously. This pandemic has challenged people in so many different ways. As we already know, I am a person who chooses to life as an optimist. However, it was even challenging for myself when the lock down occurred. Social isolation is not something that humans thrive upon. We are social creatures. It is how we function. It is in our programming.

Like many others, during lock down, I quickly turned to various methods of virtual socializing. Weekly zoom calls as well as virtual Zumba classes (shout out to all my Zumba instructors of making this happen and still do). My husband was able to spend more time at home as well which was a gift to our family. My parental leave ended and I returned to work in July which was at first a little scary as I work directly with people and within the six foot bubble. However, I love my job and the mental benefits of being back to work has been monumental.

I have always loved being outside; however, my appreciation for nature grew even stronger and has become a necessity for my mental health. I have discovered so many wonderful hiking trails that are so close to where I reside. My friend and I joke that we have hiked more in these trails over the past year than we have in the last 35. Nature is truly therapeutic.

Hiking on a rainy day

In terms of my gastrectomy journey, things are going well. I did not gain my quarantine 15 like I had hoped but I have been fairly stable at 111-112lbs. This is lower than pre-pregnancy (who says that?!?!), but I am hoping to gain back at least another 5lbs. Winter is coming. This should help…haha. Also, I have been experiencing a significant amount of burping since my son was born. I attribute it to having my intestines rearranged after being pregnant and then not pregnant. I know many others suffer from burping right after surgery so I guess I have been lucky.

I also have restarted the process of screening for the breast cancer side of having the mutation. I haven’t had my annual MRI/Mammogram in over two years due to pregnancy and breastfeeding. It was always on my list to get the screening going again and earlier this week I started the process of contacting my family doctor for the referral. It is funny how the universe works because the genetics team in my area called me as well yesterday to see how I was doing and to discuss restarting the process as well. Wild!

Before falling asleep, I think about a few things I am thankful for. I think this is a nice exercise for people to do to recognize the great things in their lives. I always start with thanking for family, friends, and good health. Tonight I’ll be thankful that I was fortunate to celebrate my 36th birthday.

Birthday donuts!

One year wiser

The other day my little dude turned one. What a wild time to be turning one. Originally I had planned to take him to the aquarium and do a small dinner with immediate family in the evening. Instead, we did all of his favourite things from home such as sing songs, read him his favourite books, go for a walk in his carrier, and eat lots of food. Instead of a family dinner and cake smash it evolved into an afternoon family video call cake smash after his second nap and before dinner (yes, dessert BEFORE dinner). Looking back on it, it wasn’t exactly what we planned but it was very chill and a wonderful first birthday.

I am a blogger, not a baker. I call it the Salvador Dali melting cupcake cake.

The way we live is rapidly evolving. This pandemic has forced many people to drastically alter their daily routines and adapt to a totally new routine. Just when you think you have got it figured out, it changes again. It has caused a worldwide identity crisis. But the thing about a challenge is that forces growth.

Reflecting on the past year, I have gone through some tremendous personal growth. I used to divide my life into “before my stomach was removed” and “after my stomach was removed” as this was a defining moment in my life. Then it was “before baby” and “after baby”. Now I can say, “before the pandemic” and when this is all over “after the pandemic”.

Initially, change can be scary. There are many unknowns about your future resulting in anxiety and stress. Our brain doesn’t have an answer but it wants to find one, so it runs scenario, after scenario, after scenario, in a crazy infinity loop. Eventually you work your way through the situation, find the answer, and ultimately adapt. That’s the great thing about the human race, we adapt.

I know that after the lockdowns and quarantines have ended the world will be a different place. My hope is that it will be for the better. People will learn to appreciate all the small things in life that maybe weren’t noticed in the past. Who ever thought grocery shopping would become scary? Maybe more people will be able to work from home and spend more time with their families. Look at how virtual calls are bringing people together when they are physically apart. Care mongering. The list goes on. Personally, I am hoping to gain the quarantine 15.

Just prior to posting this my yoga instructor, Jessica, shared with us this inspirational video which lead me to find so many other great ones people have created looking at the light in this potentially dark situation. I also recommend this one, it will hit you right in the feels.

The Log Challenge

I am an avid Survivor fan. I have seen all forty seasons (well currently on season 40) since it premiered in 2000. That is a twenty year history watching Survivor. It is the only TV show I have watched consistently since it began. They call this season the Superbowl of Survivor as it features twenty contestants who were all winners at one point in time.

There is a contestant on this season, Ethan Zohn, who won the title of sole Survivor back in 2002. However in 2009 he was diagnosed with Hodgkin’s lymphoma, battled it hard with multiple rounds of intensive chemotherapy, stem cell transplants and survived it. He was deemed cancer free in 2013. Obviously, I don’t know Ethan personally but he seems like an incredibly positive and kind person. He is now back on Survivor.

There was a challenge this week where the survivor contestants had to retrieve twenty logs on top of a peak and bring them back to their base camp. The catch was that they had to do it one log at a time by sundown. The path involved traversing a rocky path along the sea, climbing up a steep rugged man made staircase, followed by a rough trail to the pile of logs. This path looked grueling even for the healthiest fit person. Around the 16th log, Ethan’s legs were collapsing on him, he was feeling faint and he actually fainted for a brief moment. He was not going to give up but the medical team had to be called in to examine him. They warned him that if he did not stop, he would risk losing consciousness again.

This is where the episode really got to me. So much that I needed to write a whole blog post about it. While fighting back tears Ethan explained, “I felt so disappointed in myself, I just wanted to complete this for myself. I had already put in sixteen trips, like four more trips to finish this thing, I just did not want to quit. I wanted to set a good example for everyone who has been through a health challenge who thinks they can’t do it anymore, you can do it. You can get through those hard moments and I just sucked it up.” He wanted to complete this challenge so much but his body was limiting him.

Watching that segment brought up deep feelings that I did not expect to occur as I could relate to Ethan in that moment. Was somebody cutting onions? Living without a stomach involves many moments of mind over matter. Countless times when you want something to happen but your body doesn’t really agree. A piece of cake may be good today but tomorrow, maybe not. Who ever though dessert could be scary?!?!?

In the end, Ethan completed the challenge and when he went to retrieve his final log, the other survivors joined him. This reminded me of my own community who has supported me on this adventure. By far, one of my most favourite and memorable moments in Survivor.

Photo by Lum3n.com on Pexels.com

Eight months post partum update

Happy Holidays!

I am now eight months post partum and man, time is flying by. My little baby who was once a blob on the floor is now sitting up, belly shuffling, and eating up a storm. We are so fortunate to have such a wonderful joy in our lives.

For the past 10 months or so, I have been participating in formal Yoga classes. What began as prenatal classes turned into postnatal mom and baby classes. Each week our instructor leads with a question followed by a group discussion prior to our class.

A couple weeks ago the question was around challenges we were facing. I wasn’t sure what to discuss at first; however, as we went around the circle, it came to me. Weight loss.

As mentioned earlier, I lost my pregnancy weight rapidly. Around my fourth post partum month, I had already returned to my pre-pregnancy weight. This would be a dream of many post partum women and I was also happy to return to my old size. Alas, this weight loss continued and I am now five pounds lighter – sitting at an average of 111lbs.

Breastfeeding adds additional caloric demands and being busy with an active baby burns even more calories. I am a busy bee and I am not consuming enough to keep up. I also noticed that I was feeding our little more frequently than a few months ago.

So I was faced with the decision to start formula/combo feeding for both of our well being. It has been a challenging transition. In a society that places so much pressure on a woman to breastfeed, I felt like I had failed. I don’t fail things.   I am now doing one daily feed of formula a day and it has been better for everyone. Whether it is breast of formula – fed is best.

I have done so much self reflection over the past eight months.  When you have such a dramatic shift in your life, it really forces you to look inwards and evaluate yourself. I often tell stories and preface with “before my surgery” or “after my surgery” because it was as if my life had been split into two phases. I can now understand when people discuss, “before kids I…” or “after kids I…”.

Life challenges bring personal growth. It throws you off and forces you to take measures to restore your balance. You have a choice to decide your outcome. Rise above or let it take you down. I chose to rise above.

Challenge accepted.

I want to wish everyone the happiest of holidays this season.  Remember to take some time for yourself among all the hustle and bustle of this season.

P.S. I passed my exam.

What exam?

Hey everyone! This blog post is centered around the big exam I was studying for with a new baby. Crazy? Maybe. Good idea? Yup!

In July I started to study for the final step of my CAMPT certification. CAMPT stands for the Canadian Academy of Manipulative Physiotherapy and FCAMPT physiotherapists are Fellows of the Canadian Academy of Manipulative Physiotherapy. It’s a mouthful, I know, and I have been working towards this certification for the past nine years. My friends often jokingly comment, “you’re always studying for something”. This is what I have been building up towards. The fastest someone can complete this diploma would be five years as the courses are offered twice a year in Ontario. There are five levels. Many complete Level 1 following their completion of physiotherapy school or write it during their last term as it heavily based on theory. I had decided to take a year off after completing six consecutive years of university and twenty years of school and began the process in the fall of 2010.

Taken from the Canadian Physiotherapy Association: Orthopaedic Division Anon, (2019). [image] Available at: https://www.orthodiv.org/education/ [Accessed 28 Sep. 2019].

Next it was off to Level 2 and Level 3. Both of these levels are broken down into the upper and lower quadrants of your body. Level 2: upper and lower. Level 3: upper and lower. Level 2’s are broken down over four weekends and Level 3’s are over three weekends. Participating in these courses make for a long work week as you are in course Friday – Sunday only to return to work on Monday. Each of these courses take place over a period of three to four months (one weekend a month on average). There are written exams on the final weekend of the Level 2 and Level 3 courses.

I completed my Levels 2’s in two years to give myself one course a year to complete. Got married and then went full speed ahead with my Level 3’s and completed them both in the same year. If you are doing the math, I’m now in the fall/winter of 2013. What else happened in the winter of 2013? Oh yeah, CDH1 mutation diagnosis. Followed by total gastrectomy in spring of 2014.

Needless to say, I stopped my studies to focus on recovery. I debated whether or not I should carry on through my education path as a large practical exam follows the completion of your Level 3’s focusing on ALL material from previous courses. This also involves 60 hours of clinical mentorship which is completed in your own time outside of work.

I decided that it only made sense to get back into it and signed up for the Intermediate Practical Exam. So back onto the study train I went taking a prep course during the fall/winter of 2016 as well as practicing with a colleague every Saturday afternoon from November 2016 to April 2017. Recall that during March – April of 2017, I also went through IVF with PGS and PGD to try prevent the gene from being passed to future generations. I challenged the Intermediate Practical Exam in April of 2017 and thankfully I passed.

So why stop there? Onto Level 4 in the fall of 2017 and Level 5 in the winter of 2018. Each of these courses are completed over two weekends. In order to complete the whole process, there is a big, big exam (Advanced Practical Exam) in two parts. Part one is a written exam that takes about six hours to complete (three hour multiple choice and three hour case study) followed by a two hour practical exam which occurs a couple months later. This exam is based on ALL of the material from level 1-5. It is offered annually in the fall.

I took a prep course in summer of 2018, practiced with colleagues on weekends for the practical, and challenged the exam (while pregnant) in fall of 2018. Fortunately, I passed 2/3 components but unfortunately, I incompleted the multiple choice portion. Multiple choices exams have been my nemesis since undergrad. This meant the next time I could attempt this exam would be fall of 2019. Doing the math in my head, I realized that I would have a young baby should I decide to attempt this exam a second time.

After serious consideration, I decided to register for the exam when registration opened in June this year. At that time, I had a two month old. Could I do it? Would it be too much? There was really no optimal time to complete this exam going forward but I wasn’t about to give up on my many years working towards this certification. My family and friends highly encouraged it and agreed to help me out where ever they could. So no time but the present, I signed up and started studying in July.

This is where I really learned to embrace “go with the flow”. It has been a difficult lesson to learn. I am a person who likes to make a solid schedule and keep to the study plan. But I quickly learned, this isn’t possible with a newborn. You’re on his schedule. So for three months, I left my books sprawled out all over our kitchen table and when our baby napped, I hit the books. When he went to bed, I was back at it. The condition of my home deteriorated a little but thanks to my husband, mom and mother in law, it didn’t look like newborn baby chaos.

On Saturday Sept 21st, I completed the exam. Obviously, I hope I passed it (I won’t know until the new year). However, if I don’t complete it, I am happy I went through the process with a baby. It kept me focused on something I was doing for me. It helped me feel less isolated during those early months when your baby is in larvae stage. I love my job and it kept me feeling like I hadn’t lost that part of myself. Oh and an added bonus was that it helped me sleep train my little one without feeling like I was stuck inside all the time.

Selfie after walking out of my exam

The thing is….in life things are not completely linear like the original diagram. There of often twists and turns. It’s what keeps you on your toes. Keeps life exciting. Sometimes, you just gotta ride the wave and work hard to reach your goals.

Four months post partum

This post has been brought to you by my coffee machine.

We have made it to month four with our little dude and time has just been flying by.  You blink your eye and suddenly he is four months old.

The past few months since I last posted have been going well.  I am still exclusively breast feeding without any issues.  In fact, my appetite continues and we both eat on the same schedule – in two hour blocks.  I continue to have better tolerance to a variety of foods that I couldn’t eat pre-pregnancy.   These foods include sweets and bread.  I have been doing the reverse keto diet and eating ALL the carbs these days.  Despite this, my weight is now 2.5lbs off of my pre-pregnancy weight and I really can’t complain.  Oh and did I mention, I can drink any type of water again.  When I’m frequenting the grocery store or public places, people often ask how old our little one is and I reply, “four months old”. They then look at me and with a surprised face and reply, “Wow, you look great”.  To avoid telling them my life story, I then mention I only gained 16lbs in my pregnancy.  See, more perks to living without a stomach. No storage tank = faster post partum weight loss.

Physically, I am doing very well.  At two months post partum I had routine blood work completed and much to my surprise, my iron level that was so low has recovered and is actually higher than it has been in since I had my gastrectomy.  I figured it was improving since I wasn’t feeling the same fatigue that I had been feeling due to low iron.  The foggy brain and just pure exhaustion had improved. Until we hit the infamous “Four month sleep regression”,  I had been feeling more energetic than I had in a long time.  Who says that with a newborn?!?!

I returned to Zumba five weeks post partum.  I started stroller fit/yoga in June and I returned to playing fastball mid July.  I still have pelvic/hip issues; however, majority of the issues is due to ligamentous laxity due to breast feeding and weakness of hip musculature. Since I can’t control the laxity issue, I can improve the muscular weakness with exercise.     Oh and seeing my pelvic physiotherapist and massage therapist regularly doesn’t hurt either.

The past couple of weeks have been more challenging due to lack of sleep.  I also decided to sign up to take an exam (in Sept) to further my physio credentials.  Crazy, right?  Nah.  Honestly, you can do anything you really want to do if you want it enough.  They say it takes a village to raise a child and I am utilizing my village now.  I am so thankful I live so close to my parents as well as my mother in law.

As I have mentioned before,  I believe that things in my life happen for a reason and another reason has recently become clear.  Experiencing the physical and mental challenges of recovering from the gastrectomy has taught me so many great lessons that I continue to apply when raising our little one.  Balance.  Mindfulness. Optimism.

Don’t sweat the small stuff.

 

 

Five years stomachless

**Somehow I never published this post and although it is now two months old, I still see value in posting it **

As I sit here with a sleeping baby in my arms, I have a quick moment to reflect on the past five years living stomachless.

Ten years ago, my family learned about the CDH1 gene, a gene that was discovered approximately ten years prior by Dr. Perry Guilford and his research team in New Zealand.

We found out about it through relatives on my mother’s paternal side of the family. Family that she didn’t know well as her father passed away from stomach cancer only hours before her birth. A couple enters the hospital together and only a mother and baby leave.

But thankfully due to science and research, both my mom, myself and many families are successfully beating stomach cancer. However, many families affected by the CDH1 mutation gene begin with a story involving a tragic loss a loss or many losses of family members.

On this post, I could go on and on about the past five years highlighting all the ups and downs but it would be a novel. In fact, just check out all my other blog posts…it IS a novel. But I want to focus on the most important lesson I have learned and live by on a daily basis.

I have grown exponentially as an individual. Most importantly, I have learned to respect the relationship between mind and body. You are always going to be faced with challenges in your life and you have a choice to let it best you down or to rise above and learn . Give yourself time to feel and reflect on what is occurring because it is important to recognize the negative but then choose to rise above. I still really love the 90:10 rule – 10% are the events that occur and 90% is how you react to them.

This mentality has carried me through many difficult times throughout recovery but also with many other life events (most recently pregnancy, labour, and now raising a child).

I read many posts on facebook from many other individuals who are in various stages of the journey with CDH1 – from learning about the gene, to decision making about having the total gastrectomy to recovery. They always bring back a memory from that time in my own story.

My best advise is hang in there, be strong, be patient, persevere and don’t let this gene take you down. You’ll be stronger because of it.

Five weeks post partum – Return to the gym!

As I lie here trapped under a sleeping baby (you should never wake a sleeping baby) it seems like the best time to catch up everyone on my most recent achievements post partum.

Yesterday was Mother’s Day and I celebrated my first one in style – return to Zumba with my mom. Although I still have minor aches and pains in my pelvis, I decided that it was time to return to the gym. Most healthcare professionals would recommend a six week recovery time; however, I was fairly fit throughout pregnancy so I figured five weeks would be close enough.

During the past few weeks my sacroiliac joint was becoming stiffer and more painful so in true physio spirit, it was time to do something about it. I am not used to sitting for prolonged periods of time and when your breastfeeding for a large portion of your day, my body started to feel the effects of immobility.

I was nervous to return, mainly for fear of urinating on the floor during the squats in class but thankfully, that didn’t occur. But, I quickly realized that my sports bra for my pre-pregnancy less than full A cup boobs was definitely not enough support for my postnatal boobs. This is something I have never had to deal with and never even considered.

After class, my pelvis felt a little worked but that was to be expected. Within the hour, I felt much better. Physically and mentally. Exercise IS medicine.

Michelle (my Zumba instructor), me and mom after class