Great news from my surgeon when I saw him earlier this week. Looks like everything is on track for a good recovery. He also said that I can start with some light exercise which is a good thing as I had already been walking up to 7 km a day when I saw him.
With this news I have started going to a local gym once a day for 30 minutes of cardio and 30 minutes of granny weights (to start with - on the advice of my surgeon). The cardio helps burn off cortisol and adrenaline that are some of the by products of the fight or flight response triggered by worries about my health etc... and the weights will help me convert the energy from my high calorie diet to muscle mass instead of fat.
My body continues to adapt to the new plumbing so much so that I have been able to expand my diet to include more fibrous and starchy foods and less of the food that is blended beyond belief! I have also relaxed more and am able to appreciate and enjoy this time off from work as an opportunity to rest and heal while also still working on a couple of (fun) projects.
Tina and I are continuing with adoption. We have completed our home study and are in the process of creating our adoption profile. Getting much closer to entering the domestic adoption pool of wanna-be adoptive parents.
I am also researching elements of permaculture to create a garden design for a couple of friends of ours. There is something fascinating and nourishing about applying the principles of design to something that will be a living collection of organisms that will produce food at the end of the season.
So I find myself in a pretty good frame of mind these days which I am grateful for. One thing though that I am finding annoying/struggling with is some pretty disrupted sleep. I tend to wake up 5-6 times a night due to two things... very intense dreams and needing to empty the ileostomy (at least once a night right now). This is not the first time I have dealt with disrupted sleep and I believe that as my body adapts to the ileostomy, my medical situation stabilizes, and the adoption process unfolds my sleep will stabilize as well.
It's odd too. During my waking hours I feel pretty grounded and have a good degree of confidence about the future. I am also not in touch with much felt sense of anxiety or fear (tight chest, elevated heart rate etc...) about my health or the future. As a result I tend to go about my day with other activities and don't devote much effort to processing this information... okay to be honest there is some chatter in my head about some of the medical possibilities but there is not much "umph" behind it.
Judging from the story lines though of the 5 or 6 showings of Dan's subconscious per night I think this is where the heavy lifting is being done on my fears, anxieties and feelings of hurt/loss associated with my medical journey at the moment and our (Tina and my) status as wanna-be adoptive parents. While I appreciate the part of me that is choosing to do this heavy lifting I wish it would turn down the volume or reduce the number of showings per night.
In the event that my wishes aren't answered immediately ;) I am going to see if doing some of the heavy lifting during the day might result in some relief. Along these lines I am going to continue with regular physical activity plus incorporating some deep abdominal breathing and journal writing each day AND last doing some more blogging. So no BIG changes... simply re-incorporating some tools that I have found to be helpful before.
Here is a picture of Tina and I out and about on walk in Lynn Canyon.
While I was recovering in the post-op ward after my surgery my blood pressure dropped and so did my hemoglobin. Both symptoms of internal bleeding. These both went down so low that my surgeon was seriously considering a second operation to stop the bleeding. It was also recommended that I receive a blood transfusion to which I said yes. So began a 12 hour holding pattern to see if my body would stop the bleed on its own or if my surgeon would have to go in and fix the broken pipe(s).. I can remember at first thinking shit shit shit shit this is not good. And while that thought didn't go away it was definitely tempered by assurances from my surgeon that if a second operation was needed it would be a speed bump; nothing more (I swear the more time I spend with surgeons the more I am convinced that they are today's wizards).
Next came a reflection that the problems I face in life can be judged by how the sit on two continuums. The first continuum measures how much control I have over the problem and the second continuum measures the impact of the problem on my life (first world problems vs. real problems)
In this situation it became abundantly clear that this was one of those situations where I had no control over the outcome and that it was not a first world problems. Other than lying down on the hospital stretcher there was nothing else I could do to get my body to turn off the valve that was feeding the leaking blood vessel(s). In that moment I had a deep appreciation for all those problems that I have and had that did not match the criteria of the problem I was facing. Angst I have over my career, hobbies and how I would occupy myself during the recovery process fell away... those issues seemed easy... pebbles on the highway of life. I also felt frustration that I could not affect the outcome as I, like other members of my family, embrace Dylan Thomas' "Do not go gentle into that good night" and believe that through willpower one can work through many of life's problems.
While I was not in any physical pain during this holding pattern it was not the most calm of experiences and I was very grateful to have Dylan (one of my brothers) and Tina (my wife) with me.
With me. I knew during this time that what I needed was physical contact from people that I love. No words. No questioning the doctor or interpreting the latest blood pressure reading or distracting me with a story. Simply contact by holding my hand and matching the firmness in my hand with the firmness in their hand. Pure simple human contact which could carry the message that I was surrounded by those that loved me and that there were others standing with me in full acceptance of the situation and sharing the burden.
It is the memory of being in this difficult holding pattern with Dylan and Tina by my side combined with the genuine caring and care exhibited by my surgeon that has more than once brought me to tears with an overwhelmingly deep experience of gratitude. Gratitude for being blessed with a community of people where love is the foundation. Gratitude to all the doctors, nurses and health care professionals who have helped me in my journey. And gratitude to all Canadians for giving me the gift of world class health care without having to worry about how to pay for it.
More and more now I feel as if I am part of a large web where each thread connects me to all of you. The thread is made up of love and like love the thread is flexible. This flexibility has allowed me to stretch and grow and chart my own path while also pulling me back from, or over, obstacles that I have encountered. Sometimes when I feel particularly tense I imagine myself letting go and feeling myself sinking back into this web while knowing that all of you either in person or with your thoughts have my, and Tina's back.
With each time around the medical merry, or not so, merry go round I find myself acutely aware of how important love, relationships and community are in my life and as well the question of "Are we in this life together or... are we in it alone?" I know my answer.
The last couple of days it seems that the light at the end of the tunnel has gotten brighter and I feel like I am just past one of the crests on my road to recovery. With this I feel excited about all the projects and activities that I want to resume... pottery, Green Guys on the Drive, permaculture, cooking and getting back into the outdoors as well as the biggest endeavour of all for Tina and I... creating a family by adopting a child of our own.
Alongside this excitement I notice a desire to dive deep into one of these projects... the one that is top of mind right now is learning about permaculture so I can help a couple of friends out with their garden this year. It's a fun project and I like learning new things... Plus their is a lot of planning and research required which might also mean a few flowcharts ;)
At the same time I can't help but remember how quickly I dove back into work after my Whipple surgery four years ago. It was about at the same point in my recovery when I was on the upswing that I chose to dive back into what was at the time a terribly exciting job that I could really sink my teeth into... It also served as a good distraction from the sometimes emotionally laden path to recovery... not always a bad thing. So I sunk my teeth in and focussed on work and about 11 months after surgery ended up back in the hospital after having a GI bleed due to a lesion near the site of my surgery. I think this bleed was in part due to not paying attention to my own body's needs while also undertaking too much stressful work.
And here I am again. On the upswing and wanting to make a different choice. To follow the healing mantra of "hurry up and wait". So my plan is to approach these projects, which I guess is a large part of my normal life, in a more balanced approach then last time. To phase them in slowly while using this time right now as an opportunity to simply rest and relax and to learn how to take care of my body with this reconfigured digestive tract of mine. This is my plan and fingers crossed I'll stick to it!
Update: I head into Saint Paul's Hospital tomorrow morning at 730 for a surgery time of 930. Tina will send out an update by email once I am in recovery.
Tomorrow morning I will subject myself to today's wizards of biology for them to remove an organ that has been both the biggest risk to my life and been a vehicle through which I have taught myself to live a much more nourishing life. So my guess is the first part makes sense to you; surgeons are today's wizards and my colon, complete with all of its polyps, is a ticking colon cancer time bomb.
But if you said the piece about my colon being a vehicle through which I have taught myself to live a more nourishing life sounded like bullocks I would understand. After all the colon is the last stop in the body's 20 foot long GI tract and its main purpose is to extract water and whatever small amount of nourishment is left in the previously ingested food prior to being pushed out one's rear end as waste.
When I was diagnosed with FAP life looked a lot different. I was an introverted 16 year old who was quietly struggling to make sense of a divided family and, like most kids, trying to fit in socially in high school. Colonoscopy, polyps and a colectomy were not in my vocabulary and I, like most teenagers, thought cancer was something that would happen to someone else.
The diagnoses of FAP came as a terrifying shock. All of a sudden doctors were laying out a precarious medical future for myself that included me having a colectomy, the operation that I am having tomorrow, to be done within the year. Something that at the time I understandably did not want. Fortunately my father and his partner (who has a background in nutrition) suggested that I undergo regular medical surveillance (~2 colonoscopies and endoscopies per year) while at the same time making changes to my diet, lifestyle, etc...
Getting on some level that my adolescent life was awkward enough (yes, believe it or not I was not the star of the basketball team :) ) and having a healthy fear of going under the surgeons knife I chose the wait and watch approach.
And so began a journey that was fuelled initially by my fear of dying and whose mantra was the question:
what can I do to not get sick?
Through this journey I turned over many different stones... some large and some small. Some lead me in the direction of diets and supplements and involved seeing naturopaths and dieticians where I explored everything from gluten free, macrobiotic, and low sugar diets to the vast realm of natural supplements that ranged from grounded common sense to borderline snake oil salesman. All this with the hope that these would affect change in the depths of my GI tract.
Other stones unturned were of the spiritual and new age type. This took me as far away as the Philippines when I experimented with psychic surgery (definitely a once in a lifetime experience that, while it proved to be quite extra-ordinary, did not in the end result in any changes). Other modalities that I explored included... emotional freedom technique, thought field therapy, positive visualizations, Avatar, Reiki, acupuncture, meditation, hypnosis and rolfing.
Last and certainly not least my journey also included the areas of mainstream psychotherapy including cognitive behaviour therapy, relationship skills, and communication skills. This has taken the form of attending several multi-day programs at a world class personal and professional development institute called the Haven to attending support groups and one on one counselling sessions.
Given that this journey is 17 years and counting and I have dedicated a significant chunk of my focus to it I have asked myself did any of this work and was the effort worth it? After all I am 33 years old and have had one surgery and am heading in for what will hopefully (knock on wood) be my last one tomorrow.
Did any of the actions I took result in me making it to today without developing colon cancer? Who knows. Maybe I would have had the same result if I had of prolonged the surgery and not overturned all those stones. I'll leave the answer of that up to the folks who are trained to do this kind of research.
This leads me to the second question... was it worth it? On the down side, and as of tomorrow, I will have had the two surgeries that I was trying to avoid and on top of this I am still facing some uncertainty around the existing desmoid tumours that I have. With this in mind I might be tempted to give a luke warm maybe...
But when I consider that while this journey was initially about avoiding getting sick I was also coming face to face with my own mortality. And in this face to face I found myself asking the question who am I? And I know now that I have a much clearer picture of who I am as a person and what is important to me in my life then when I started this journey.
I am a happily married young man who knows that having a family is more important to him than a career. I know that relationships and time with friends and family in the here and now is tremendously important to me. I have a much deeper appreciation for the fact that there are no guarantees in life and that bad things happen to good people. I know that I sleep better if at the end of the day if I have helped make someone's world better for them. I have also learned to accept help from those around me and that accepting help is not something to be ashamed of or to feel guilty about.
Have I figured everything out? Hell no. Have I figured some stuff out? Yes. Was the journey worth it? You bet. Is the journey over? Not even close! I'll be doing this until the day I die (a long, long time from now :) ).
Keep It Simple Stupid
I feel like a weight has been lifted from my shoulders. I feel relief knowing that I have made a decision that will help me let go of the past and move forward with my life. I find myself looking forward to surgery and taking the future oriented energy of choice and possibility and grounding it in a reality free of the risk of colon cancer.
There is also a certain, and albeit, surreal quality to my life at the moment knowing that my days of sitting on the throne are numbered; that one of my bodily rhythms will be forever altered and the satisfaction of a good old fashioned BM will be forever lost...
On the plus side though no one will ever be able to accuse me of letting one rip :)
I am also grateful for those who helped me through a week long crash course in living with an ileostomy. In less than a week several people with ileostomies themselves and/or those who know people with ileostomies have generously taken time out of their day to speak with me and help me work through my fear that people with ileostomies spend their days on the couch hiding from the light of day, wearing baggy clothes and feeling sorry for themselves.
Thankfully this turns out to be quite the opposite of the truth. You can ead a physically active life while wearing the same wardrobe and have a well adjusted social, family, and professional life.
And I get that I have yet to have the surgery and that talking is one thing and living with it is another. I also know that there will be an adjustment period AND with all of this I know that I will be okay.
The surgery is still set for Monday December 1st at Saint Paul's Hospital. I will find out the time tomorrow and if the recuperating period is anything like my last surgery I will probably feel like an old old man for most of December... So I will spend my time between now and Monday running odd errands, finishing my Christmas shopping, decorating the tree (yes I know it's still November) and doing anything else that does not fit with the lifestyle of an 80 year old man.
I will also make a concerted effort to eat copious amounts of obnoxious food that cannot be transformed into baby food via a blender --> which is what I imagine my diet will be like for the next month or so.
Earlier this week I met with my oncologist to discuss the potential impact of the planned two stage colectomy on the desmoid tumours that I currently have.
I was aware of the risk that the two upcoming surgeries might cause existing desmoid tumours to grow or new ones to form. I was however surprised at my oncologists suggestion that I should strongly consider having a straight colectomy with a permanent ileostomy (bag) as this would effectively reduce my risk of developing new desmoids or causing existing ones to grow in half.
Although given that desmoid tumours are such a rare condition... i think only 900 of these tumours are diagnosed a year in the states there is simply not much data on them in terms of treatment or prevention. Fortunately the six months of chemo that I had to treat mine worked even though the oncologist does not understand the mechanism of why it worked... Frankly I couldn't give a damn how it works as long as it works. Which it did.
So I have a choice.
How much lower is the risk of desmoids? Great question... I would estimate the risk is about halved. And again not a lot of data on this at all. So not the most comfortable decision to make for a few reasons....
Lack of data: I like to weigh the pros and cons and to be able to quantify the risks. While I can look at pros/cons. It's near impossible to get a good handle on quantifying the risks due to lack of sample size.
If it aint broke don't fix it: I am a healthy person now; I have no symptoms. Most people when considering a permanent ileostomy either have some form of disease such as colitis, chrons, IBD or cancer OR they have suffered a trauma such as a car accident or a gunshot wound. I fit neither of these cases and I feel great day to day. And I get that this is a proactive operation designed to prevent future problems.
I don't have any tattoos: I have never gotten a tattoo for the fear that one day I might regret my decision. And with this decision of a permanent ileostomy which is great because it reduces the risk of agitating/creating desmoids is terribly permanent. There is no option to revert to the plumbing that I was born with.
And at the same time it is a comfortable decision for me to make:
My medical file is big enough: I have seen enough doctors and specialists to last a life time and as much as possible I would like to give this a rest and move on with my life. While a permanent ileostomy is not my first preference if it means only one surgery AND halves my risks of developing desmoids (which can be fatal) then this greatly increases my chances of being able to lay this stuff to rest and get on with the fun things in life of which there are many many many things.
An ileostomy ain't all that bad: I have spent the last couple days doing research and talking with people who have or have had them and from what I understand it is an adjustment AND one that once made will not interfere with all the things I like to do... hiking, biking, running, yoga, swimming, camping, skiing etc... AND yes there is an adjustment period.
So with this in mind I am about 95% set on a permanent ileostomy. My surgery date is still set for December 1st. I have an appointment next week with my surgeon to review this proposal (switching from a j-pouch to a permanent ileostomy) and hopefully at end of day Wed will have the surgeon's buy-in and will still be good to go for December 1st. Fingers crossed!
Okay off to work.
Tomorrow I head in for what I hope will be my last colonoscopy EVER! At an average 1.5 colonoscopies per year for the last 16 years that means I've had about 24 or more of these...
Or to be blunt... 24 to many.
If you're wondering what one is like check out comedian Bill Engvall's synopsis... well worth the watch as it brings some much needed humour to a rather unpleasant and embarrassing procedure.
You'll also get the connection between the bullfrogs, mac trucks and colonoscopies.
I am being wheeled into the operating room. It is not what I thought. The ceiling is only slightly taller than a standard room with a drop tile ceiling that you would see in an office building. The room is quite spacious with several what look like several mobile boxes filled with equipment. Several people are in the room, I can see the surgeon and other people dressed in green scrubs. The anesthesiologist and a nurse speak to me. They put electrodes on my chest. The anesthesiologist injects something into my IV… suddenly I feel like I have had 8 beer and am lying back on a lazy-boy… only now I am sitting up and they are inserting a needle into my spine… an epidural and I don’t care. Then I am on my back counting down and then darkness.
As my surgery date draws closer I find myself thinking about the last moments before having the Whipple surgery. I wonder if I fully appreciated the highly complex plumbing procedure that was about to be performed on me by a highly skilled team executing a superbly choreographed dance lasting six hours in length.
I’m not sure that I did. I mean I knew that it was essentially a high tech plumbing procedure whereby at the end I would be missing a few body parts… namely the head of my pancreas, my duodenum and my gallbladder. I got the result and didn’t want to think about the how it was done. Knowing that a surgeon who had choreographed and lead 750 of these dances was good enough for me.
And now with a colectomy less than a month away I find myself wanting to learn more. I want to know the choreography of the dance from four years ago and I want to see behind the curtain of the dance to come that will be performed within the theatre of my body. Yes I am curious AND I think knowing the choreography will help my body give a deeper level of permission to the surgical team to do the job they need to do.
These were my thoughts a week ago when I found a couple of videos on youtube of a Whipple and a colectomy being performed. Note: they are definitely not for the squeamish. I am also not sure if the colectomy in the video is the same type of colectomy that I will have. Either way if you are curious have a look.
When I had a Whipple surgery back in 2010 I had a top notched surgeon which helped me feel comfortable about the surgery. I had also not undergone a serious operation before.
Reflecting back I think I dealt with the preparation as best I could. At the time I was two months into an exciting new job, sitting on the board of directors of a non-profit, and a newly wed with a honeymoon only three months behind me. So plenty of distraction and borrowed confidence to help me out.
I was also scared of the surgery and uncomfortable with asking for help from friends and family. This is probably why I went to the surgery pre-assessment on my own on a cold snowy morning and then went off to work and also only told my sister and brother-in-law about the surgery the night before and my nephew only found out after the surgery had taken place from my brother.
After a Whipple and being diagnosed with desmoids and undergoing 6 months of chemo believe me I get that I cannot do this on my own. That my wonderful wife and I cannot do this on our own.
I have also learned that living with FAP can mean living with a lot of what-iffs…
what if the colectomy causes new desmoids to form or the existing ones to grow and then the chemo doesn’t work?
what if the j-pouch for the colectomy becomes inflamed and I have to live with a permanent colostomy?
These what-iffs can escalate quickly to the point as if it feels like death is knocking on my door. I have since learned that answering these what-iffs is key to keeping myself grounded in the hear and now.
I am determined to do this differently. To be more open to the help of loved ones and to arm myself with as much information as possible so I can answer those what-iffs and keep my doorstep free for friends and family.