Uncertainty aplenty remains for me when looking ahead to my future.  

And these holidays with Tina home from work, my inlaws staying with us, and many friends and family around I feel insulated from the future.  Most of each day I feel protected by layers upon layers of soft white cotton emanating healing white light with some heat while protecting me from the unwanted sounds of an uncertain future begging and yapping at my ears. 

It's a cocoon that Tina and I put quite a bit of effort building this holiday season to give ourselves a break and to also re-create for us what Christmas used to be about.  Spending time with friends and family in good health with plenty of good holiday cheer.  A chance to set life back on the rails after the majority of the last six Christmas' being interrupted by surgeries and hospital stays.

So, so far (knock on wood) these holidays have been a true blessing for the both of us.  For me I notice a much greater ability to take life one day at a time.  When I do get into comparing myself to what life used to be like I more often than not use the new normal as the benchmark instead.   The new normal where I am recovering from nine surgeries and giving my digestive system and body time to heal from those violent and yet neccessary acts.

Inside this cocoon I notice yet again that it is quality time with friends and family plus myself allowing me to live one day, one week at a time that allows me to stay connected and comforted within the walls of this cocoon.  
​

Poplar leaves flickering back and forth set against a clear blue Cariboo sky is a very clear memory of mine from my childhood of growing up on my Dad's guest ranch (Big Bar Guest Ranch). It's a deep memory as I spent plenty of time outside on the Guest Ranch either working or playing and a poplar in full bloom set against a clear blue sky was a very common sight. 

At just over one year since almost dying in the ICU at Saint Paul's 3-4 times this memory has become even more precious to me as it also reminds me of the fragility of life.  It is a reminder to me just how quickly my life can change.  

A gust of wind comes along and the poplar leaves have no choice but to flicker back and forth showing the top and the bottom of each leaf with the hope that the wind doesn't blow so strong that the leaf is separated from its tenous connection to the tree.  The Cariboo blue sky combined with the colours of the poplar tree is so beautiful that it reminds how beauftiful  nature and life can be.  

Yes having contact with my own mortality has for the most part been a difficult and unpleaseant experience for myself.  And there have been a few gifts.  

And this deeper awareness of the fragility of life has been one of them. From being a young adult looking to set myself up as a learning and development contractor working on three videos on Fetal Alchohol and Sex for a friend of mine to being in the worst pain in my life and being dependant on a group of doctors to save my life.  Life can change so damned fast.  Almost as fast as the leaves on a poplar tree flicker back and forth in the wind of change. 

Before this experience I remember hearing the popular saying of not to worry too much about one's health as any of us could be hit by a bus at any moment.   I think this isn't a very helpful saying for someone like myself who is in the middle of his own existential anxiety (I'll write more about this later). I do have a deeper and more connected experience with how fast that bus can travel just as I can feel the strength of the Cariboo breeze against my face and the twinkling of the poplar leaves against the clear blue sky of the Cariboo.  

I'm home again I say to myself as I let out a sigh of relief and worry. Relief at being home for Christmas, knock on wood (a little bit of superstition is never far away from me these days), and relief for recovering from the infections that brought me into hospital in the first place and had me in there for almost 7 weeks. And worry for the all the uncertainty that I am aware of when it comes to my health/body.

I'll write more of the medical details of what lead me to stay in the hospital and the uncertainty related to my health later. For now I want a break from all of that and an opportunity to to spend time with friends and family over these upcoming holidays.

There are two pieces of learning from this most recent hospital stay that I know will stick with me.

One: Moments, brief or long, spent with friends and family over the phone, in person or a conversation over email does wonders for me as I find it to be very nourishing for myself.

Two: Now that I am out of the hospital one of my mid-term goals is to find hobbies or activities that involve me being with others and doing something that that takes me out of myself and connects me with others.

So if you are wanting to help and are struggling with finding a way to help know that a visit, a phone call, an email, or a Skype call (for those of you abroad) are all things that I look forward to and find to be nourishing.

Hope your Christmas Holidays are shaping up to be what you need them to be.

Lots of Love,

​Dan

I'm not feeling full of energy at the moment and it's been bothering me for sometime about writing a blog post. 

I wanted to let all of you know that I am okay.  

July and August were rough months with time spent in ER and time spent hopping from one doctor appointment to another.  Not fun.  This was all to nail down the source of fevers I had been having.  In my opinion they never did find the source and instead elected to put me on a broad spectrum antibiotic for six weeks.  I have less than two weeks to go and I hope it works.  

If you'd like to know more about the medical side of it please feel free to write or call me.

Right now I am very weary from the medical rodeo ride.  And there doesn't appear to be an end in sight either.  

This month I have vowed to make more inroads into the local cancer community.  I was planning on doing this during the summer and it didn't happen.  Hopefully this will lessen some of the anxiety and other not so fun feelings I am experiencing. 

I am also looking to find more ways to not be my own worst enemy.  I know I have written about this before and it keeps coming up.  This is the toughest stuff I have faced in my life and in spite of this I still think that the average person in similar circumstances would find it easier...

Here is how my brain works.... 

Yeah so what nine surgeries and a big set back during the summer in that nothing has really progressed?  I'll just chill out and listen to music and play video games plus you know meditate and you know it's all good 'cause I know everything will somehow get better.  Because after all of this that has happened you know I still have a very strong sense of faith in life that it will continue and things will get better... barf... need I go on?

This is opposed to the reality of feeling weary and tired.  Of feeling grief over the experiences that I have not been able to participate in since last October.  Of experiencing tears every day over the uncertainties that I am facing... Will the antibiotics work? Will I be able to take chemo to get the tumors to shrink? Will the chemo work? Will my wounds heal up or will I have to wear three illeostomy bags permanently?  Feeling like I can't trust my body while it goes through all of this craziness and last but not least...

Am I doing everything I can to heal?  

Screw that.  

I'm doing what I can in a stupidly difficult situation and just maybe that's good enough. 

Just maybe...

Also:

If any of you had some ideas for distractions that would be great.  Or some small activities I could do that could help bring some meaning and purpose in my life.   Some guidelines... something that could get me out of the house and in contact with other people.

I am also looking for some or some Light, FUNNY, books to read (some of my favourite books and authors have been: John Grisham, The Foreverwar, 20th Century Historical Fiction, James Mitchner's Hawaii, the Flashman Series).  I am also fond of podcasts and if you had a favourite or two i'd be interested in checking them out.  

Hope all of you are well,


​Dan



 

Written last night (Tues July 12)

A week ago Monday I started to experience fevers on and off throughout the day and night --> 37 to 38.2 Celsius. Along with this came increased pain, sweats and the occasional chill. Two extra strength Tylenol were able to break the fever each time and bring it down to below 37. By Thursday morning I was sick of this nonsense and off Tina and I went to the ER at Saint Paul's.

After having several blood tests, a CT scan, a chest x-Ray and some kind of urine and stool analysis plus multiple people probing my abdomen (to me this is the worst as my reflex is to tense up and want to break the person's fingers) they didn't have any evidence of what was causing the fevers. So a doctor that I trust from the winter, the one who caught the 7 cm blood clot in my lungs and thereby saved my life, suggested that I spend the night on the seventh floor so they could monitor me and make sure I was stable and to see if any thing developed in the blood and urine cultures. So I stayed.

After some arm twisting the night before my doctor contacted my oncologist in the morning and their best guess over the cause of my fever was due to tumour fever. This apparently is when tissue within the desmoid is disconnected from its source of blood and the tissue dies. The body then produces an immune response (fever) to deal with it.

With this news I was released from hospital knowing that if the cultures returned anything abnormal they'd give me a shout.

Fast forward to today and I've had the same spiking fevers since leaving the hospital. At first an annoyance as I thought oh they would eventually go away as long as I rested and then worrisome when they did not. So yesterday morning after reaching my breaking point I opted to make an appointment for today with the pain and symptom specialists at the BC Cancer Agency. And then this morning figuring that the squeaky wheel gets the grease I called my oncologist's office and the nurses line at the Cancer Agency. And they heard me.

The pain and symptom doctor who I had seen before quickly reviewed the tests done at Saint Paul's last week and realized that two key tests were not done... Basically tests to see if I had a fungal infection in my body.

This news really frustrated me and brought on a few tears at which point the doctor slowed right down and said with much empathy that wow no wonder this must be a frustrating experience for me. I slowed down too and said yes and said how frustrated I am with the machine... The system and not the people. How frustrated I am at how much self advocacy and pushing it can take at times to get the right information. It's not personal its systemic and yes the machine is much better than it is in America and wholly rotten donkey balls does it fall short at times.

So right now I am at home resting and starting the unwinding process by writing this post. I feel a bit more confident that me and the system will get to the bottom of the fevers and come up with a solution. And I think tonight I will watch the Lego movie.... Everything is Awesome as it's some great distraction.

The pace at which I am walking the yellow brick road is never as quick as I would like it to be and my distance from the end of it... good health is never as close as I want it to be. Chomping at the bit. This isn't the first time I have talked about this.

And every doctor that I see weather it is my oncologist, pain specialist, family doctor, gastroenterologist or another medical professional is impressed with my pace and progress. When I hear this I feel a wave of relief, a lessening of tension in my body as I notice a reduction in worry about how I am doing (Am I taking the right steps? Am I doing everything that I can to heal myself? Am I eating the right food? Am I getting enough exercise or too much?) and I also feel a wave of self compassion for myself as I ve myself credit for doing all the right things.
And surprise, surprise every time I check in with Tina or her parents or my brothers and sisters or for that matter anyone else who was with me in the hospital has a similar opinion to those folks with all those fancy letters behind their names and I have a similar response as well... relief from worry and more compassion for myself.

Time passes then my memory of what was said fades away and the worry and doubt returns.

This happened as recently as yesterday afternoon when I was relaxing with Tina and her parents on their porch. I asked Rose if she thought the pace of my recovery was going well and she thought I was doing very very well for what I had been through. To be clear everyone at the table shared Rose's opinion.

What followed then was a discussion, a recounting of some of the most scariest moments of my time in the hospital... This isn't the first time these discussions have happened and it won't be the last either. I think each time the discussions get easier and less scary (at least for me).

I was on heavy duty pain killers for most of the scary moments (7 weeks in ICU) plus a good dose of Ativan. With a surgery every other day in the ICU for a total of nine surgeries I didn't have a lot of room for fear. I did have a lot of room for doing what needed to get done to live and a bit of comedy as well ie giving my friends and family the queen wave each time I left for the OR... man was I stoned.

So now.... 4 months out from the hospital I have more space to separate out the present from the past. And I find myself experiencing quite a bit of fear and disbelief over my stint in hospital and in particular the time in the ICU. Yes I know that this happened over four months ago and when I talk about it or sit with myself quietly it feels like yesterday.

To help me untangle the events from my feelings surrounding those events I have started writing down the facts of the scary times along with how I felt at the time and how I feel now. Not a pleasant task and one that more than a few people have told me will help in the long term. With time and as my writing becomes more articulate (right now there are a few to many f-bombs and straight raw emotion) I plan to share some of these on the blog.

As for this continuing cycle of being hard on myself and experiencing frustration re the yellow brick road and then feeling relief when a doctor or friend/family tells me how well I am doing considering what I've been through and then forgetting about this as time passes along, I think I have a handle on one of the underlying causes (yes I was trained as an engineer to solve problems and that's what my mind does for better or for worse).

The only healing experiences that I have in my life that come close to what I am going through are the two surgeries I had previously. The Whipple and a total Colectomy. Both of these I had plenty of time to prepare for psychologically and physically. As well both were planned surgeries where the surgeons involved had performed the thoroughly planned choreographed procedure numerous times. Both of which also were performed on myself with minimal complications. Furthermore both of which within four months of the surgery I was well on my way to resuming my normal life.

So naturally I default to these surgeries to determine where the milestone markers are on this yellow brick road and if I am meeting them within the allotted time. I also default to these previous surgeries as the winter rodeo ride was such a scary and unpredictable one.

My plan is that with time and with focused writing on what happened to me in the winter that I will feel more ease on this walk down the yellow brick road.

I am still walking down that long yellow brick road to recovery with many friends and family along the way to help me along. I suppose my use of the word still implies a certain degree of impatience and/or frustration at the length of the road and the pace at which I am walking it. And I think this is a reasonable or predictable experience for what I've been through... also a good sign that I'm chomping at the bit to get back to the life I was living.

I've been meaning to write for a few weeks now especially as the last post was back at the start of May. My Dad and Myrna's 80th birthday plus a host of visitors in May meant for a busy and fun filled month. After this though I was really struggling with self acceptance over the feelings I was experiencing as a result of processing what has happened, walking the golden brick road each day, and thinking about when I will reach the end and what the end will look like.

I was experiencing depression and anxiety and wasn't having much compassion or self acceptance for having these feelings. Like most people I don't like feeling either of them, especially for periods longer than a half a day or a day and I also kept thinking that there was something wrong with me for experiencing these feelings... It was like I had forgotten what I had been through over the last 6 months and was assuming I had had a normal winter. I was in a place of not much compassion for myself which didn't help the feelings of anxiety and depression. There were other contributing factors such as one of my medications for the desmoid tumours causing me stomach pain (I've since gone off the drug and am on a new plan which I will write more about later).

Without this self acceptance I found it difficult and/or near impossible to write a blog post to all of you about how I was doing. Even with this acceptance I find this blog post a bit uneasy to write. I find the topic of mental health to be taboo in popular discourse and also viewed as being very binary. Either one falls under the clean bucket of no mental health issues or one is labelled as someone who has a mental health issue and the person is put in the “other” bucket and if the topic comes up it is whispered about and the person is always defined or seen through the label of their mental illness.

Very different say then someone who has a bum knee or a weak shoulder. Where for the most part the person is seen first and only if say the individual is playing a game of basketball or baseball is the physical injury seen in the person.

Part of my fear in writing about this topic, my path through anxiety and depression, is that others might treat me differently or worry more about me thinking that what I am going through is permanent or here to stay. Or that some might feel the need to try and fix the feelings that I am experiencing out of concern for my well being.

I realize that this is my fear and that I am projecting it out onto the world AND I also get that those of you who I am sending this out to have quite a bit of life experience and have most likely experienced anxiety and depression and/or known someone who has... i.e. this is a safe place for me to share.

My experience through all of this is that mental health is not always binary or black and white. I am learning that as I go through life there will be moments of sadness and anxiety or sometimes depending on the situation a period of depression and then I will recover and move on and according to society I will be put in the clean bucket of “no mental health issues”.

I have learned that extended periods of sadness that start to feel like a short period of depressing myself shows up as very low energy, apathy, and a withdrawing into myself where I can find some comfort and escape from reality. I have also learned that anxiety can either feel paralyzing where I find myself caught in a continuous circle of analysis paralysis which leads to an inability to make a decision. Or it can feel like a volcano erupting that powers me through the whole day to get something done only to leave me feeling frazzled at the end of the day.

At the peak of my feelings of depression and anxiety I decided to see a counselor on a regular basis to help me walk this yellow brick road. Someone who can for a change provide some expert advice instead of the all to common response from my well meaning doctors of “Well I hardly ever see someone like you so you'll learn just as much from me as I will from you.”

I also decided to put some horsepower into creating a support network of folks in the cancer community and have gone to a couple of meetings for adults living with cancer. This hasn't “fixed” anything AND it has helped me lower my feelings of anxiety and has helped me feel more supported. For years I have avoided making any inroads into the cancer community for fears that it would somehow increase my chances of getting cancer... fear based magical thinking I know.

Both of these efforts have helped and while the anxiety and feelings of sadness/depression have not disappeared, their frequency and duration have lessened.

So perhaps the biggest learning for me in the last month has been to tell myself when I am experiencing feelings of anxiety, depression, or sadness is to stop and remind myself that given the situation I am in these feelings are to be expected, that they are part of the healing process and that with time and work I will learn how to navigate them with more ease.

A friend I made at one of the support groups, who is a cancer survivor, gave me a good image to help me with this.  After I told her my story she said "Wholly sh*t it's like someone dropped a nuclear bomb on you and then a tornado swept you up and then slammed you into a brick wall.   Congrats" and followed it up with a fist bump.  

It's 1015 in the morning and I'm lying on my bed surrounded by all the materials needed to make up for the missing pieces in my plumbing anatomy.  There is a very cheerful nurse by my side who very patiently works with me to put humpty dumpty back together again.  This is a ritual that is carried out two to four times a week.  Sometimes it is a home health care nurse helping me and other times it is Tina.   After 30-45 minutes I am good to go and life gets back to "normal".

There is also the evening routine of not only hooking myself up to TPN but also getting Tina's help to inject me with a blood thinner and every other night to change my Fentanyl patches.  

These daily and weekly routines and let alone my four month stint in hospital have left me with the thought that this life of mine right now ain't normal.  I've noticed when I focus on this I start to feel down (heavy, sad) as I think somehow that my life isn't measuring up to what everyone else's life is and that I am missing out...  as my life doesn't match up to those of the people I know and more importantly it doesn't match up to this mythical and illusory definition of normal that is put forth by society, media etc...  

As an example... when I am in the middle of a dressing change I am acutely aware that I know of  no one who has to do this every 2-3 days with such a complicated set up and I feel down and frustrated and a bit lonely as I know that in addition to this being an annoyance to deal with I also believe it to not be normal.  

So what do I think is normal?  A 35 year old should have a job that allows him to provide for hisfamily (this would also mean that Tina and I by now would have a kid... grrr) and one which provides room for career advancement.  It would also mean that she has a body that allows her to be physically active with no devices attached to herbody.  It would also mean that home health care nurses, surgeons, oncologists, and gastroenterologists would just be words in a dictionary... not people that I know by name and have seen multiple times.
 
Okay I am shoulding all over myself.  

And this is obviously not my life at the MOMENT.  It is also not the life of the average person living in Sudan... or the villagers in Afghanistan or the Pacific Islanders who are fighting to keep their villages from being wiped away by climate change.  

If I accept that normal means the experience of the majority of people on this planet then my definition of normal is not accurate all...

If it is the experience of a specific socio-economic group... say white males born into good families with good genetics my definition of normal MIGHT be accurate. As far as a helpful tool to determine happiness I'm not so sure it is very robust... For instance when one meets his or her definition of normal it might contribute towards his or her happiness AND when one falls short it would be of no help at all.  

So do I need a new definition of normal?  Or should I scrap the concept all together?

What strikes me is at best there are many many many different definitions for a normal life and each is determined by geography, socio-economic factors, and genetics.  Writing this it sounds so simple to me and I have thought of this before.  What's different this time around is living a reality where my day to day experience of life is definitely different from society's definition of a normal life and what life is like for my friends and family (I am not saying that the challenges I face are harder or more difficult than others or that others don't have challenges, simply that mine are different).

For me I find it comforting and freeing when I remind myself that there are many many many different realities or definitions for what a normal life is and many of these involve challenges much more difficult then the ones that I am facing.  And while this thought does involve my comparing my life to others it is also a pathway through to gratitude for me as I do feel relief in my body, a letting go, a sinking of my body into the softness of the Earth when I realize that my challenges are not so great.  

An alternative way to look at this craziness associated with the gap between what society's definition of normal is and my day to day reality is the cognitive dissonance I am experiencing between my ideal self and my real self.  For example my ideal self would feel ready to start working and this would be a great distraction and help me to heal where as my real self is feeling full enough with coming to grips with what happened over the winter and adapting to my new anatomy and simply healing.  Life isn't what I think it should be and with this I feel sad and anxious as well as frustration and anger directed towards myself.  

I learned of this concept through two sources.... the first was a book called Compassion and Self Hate: An Alternative to Despair and the second was through many courses at a place called The Haven on Gabriola Island.  They have a good summary of this in their Selves Model (scroll to page two for the diagram).

So in addition to the pathway to gratitude that I described earlier how else do I find my way through this dissonance and the associated feelings?  Having awareness of what my ideal self looks like helps as then I can know when I am shoulding all over myself.  After awareness I am finding what helps is to ask myself given the facts of the situation what is something I can expect of myself that has the most self compassion in it.

As an example... and something I am working on at the moment is this part of my ideal self that thinks I should be a contributing member to society.  That I need to be engaged in some form of work that is giving back to the community because this is what a 35 year old is supposed to do and because this would provide a distraction for me from the sometimes unpleasant medical side of my reality.  And at the same time of shoulding all over myself I feel doubts about enacting this plan and find myself in this barren middle ground sitting on a fence with feelings of anxiety, sadness, and frustration.  

When I find myself in this place I am working on reminding myself of the facts: I am only two months out of hospital, I am on treatment for desmoid tumours, I am regaining my strength, and that I already help to operate a farm that will provide veggies to 26 people.  And that what I most need to do is give myself permission to rest and heal.  This doesn't always work and I'm hoping with time that this type of self talk will... that as I exercise this muscle it will become stronger and I will spend less time on the fence in no man's land.  Talking to Tina, friends, and family helps too; helps huge.  

I saw a nutritionist through Inspire Health earlier this week and she reminded me of the multiple benefits of bone broth.  So, feeling inspired at the prospect of being able to do something to help myself heal in a small way (I don't pretend that bone broth is the magical elixir of eternal life) I purchased a book called Nourishing Broths at the nearest Chapters, found a recipe, visited a local organic (cough) hipster butcher, and found myself at home with one big pork hock and much more than the called for six cups of chicken bones.  Nine hours of simmering later and the broth or stock in this case was complete.

Given that the radius of foods that my healing gut will tolerate is about as big as one of those snack sized miniature carrots (so far I can tolerate white rice, store bought chicken broth, eggs, canned tuna, chicken, white bread, almond butter, cream of wheat, maple syrup, almond milk, Gatorade, mayonnaise, miso, water, and some protein powder) I was a bit curious if my gut could handle all this nutritional goodness... Maybe I shouldn't have made 3+ liters of the stuff... oh well... go big or go home.

So far cooking rice in the stock hasn't turned out so well for me.  I'll give it a break for a couple of days and then try some of it in smaller proportions that has no fat in it.  See if that works.

In the mean time if any of you in  Vancouver would like some homemade Organic (cough) hipster chicken stock that has so much gelatin in it that it wiggles and shakes when you move it feel free to stop by my place and pick some up!

Okay now I feel like I am past the 2-3 week long departure from blogging....

It has now been over two months since my return from hospital and over all I find myself feeling more acceptance over the hurry up and wait to heal piece and the take it easy don't over do it advice that all of you remind me of (some of you bless your heart - daily - Tina, Dylan).  

Highlights since I have last written that I will hopefully write more about later:

• Up to 140 lbs - i left the hospital at 127 lbs
• Pain is much better managed with a Fentanyl  patch (unlike hydromorophone Fentanyl doesn't rely on the digestive tract for absorption).
• Went to my first ever support group for men living with/or survivors of cancer (huge for me as before I avoided these like the plague thinking that if I went I would some how come down with cancer - ok I exaggerate a little bit).  The group was very helpful.  I will be back.
• Started therapy for desmoid tumours.  I am taking a drug called Imatinib by pill once a day.  It has a 30-50% chance of working.  If it works great, and if not it's a stop gap until I am well enough to go on the same type of chemo that worked for me last time.  I will have a CT scan in 14 weeks to see if the drug is having any effect.  
• Green Guys on The Drive is going really well and I have felt really honored and supported by all the friends and family who have come out to help. We are expecting our first harvest in middle of May.  We have a website too now that you can follow:  http://greenguysthedrive.weebly.com/our-story.html
• Games night every week with friends and family.  So far the game of choice has been Puerto Rico.  At some point we will switch it up.  If anyone has any suggestions for another good board game let me know.  Any and all are welcome to come.  They are usually Wed nights starting at 6:30 PM at my place. 

Okay I will write more later.   Right now I need to hoof it to the kitchen to make myself some white rice with eggs, miso, canned tuna and store bought chicken broth. Hey it's better than not eating at all!  Okay I'm not going to pretend that this last statement of mine wipes away food fatigue and it helps... it helps.  

Hope all of you are well.  Send me an email or drop me a comment on the blog.  It's great to hear from you and helps me get over the cone of silence that one can get from blogging into the nether regions of the internet.  

Cheers,

Dan

Sometimes this is my experience of my healing journey.  Sometimes the bumps hurt like hell and other times I barely feel them. This week I felt every single one of them.  

Yesterday morning I checked myself into Saint Paul's ER with Dylan and Tina.  I had been trying to manage an elevated temperature for a couple of days that finally turned into a fever.  I also had pretty bad abdominal cramping as well as a high heart rate.  Luckily with these symptoms and my recent medical rodeo ride it took all of two seconds for the triage nurse to admit me to a bed and get me an IV with fluids and some pain medication (Hydrophone). Given my pain was about an 8/10 the pain meds were greatly appreciated by me.  

And then hospital time set in.  The whole hurry up and wait.  15.5 hours later and after a thorough set of tests (blood work, chest and abdominal x-rays, plus an abdominal and pelvic CT scan) and a great reduction in pain and disappearance of my fever I was discharged.

The only thing missing was a clear medical explanation for the symptoms that brought me into the ER. The best guess the docs had for the abdominal pain was:

1. My body adapting to the shortened small bowel and absorbing more water from my stool.  This meant that I was probably taking to much Imodium and it was causing cramps (pain).  This is a good thing as it means my body is adapting. 
2. Partly due to a decision by myself and my home TPN team to reduce the amount of ant acids I was taking.  I have since resumed the original amount of ant acids that I was on.
3. Simply not taking enough pain meds.  
4. One of the Desmoid tumours that I have is quite large and sitting adjacent to my small bowel.  It might be causing some discomfort due to local inflammation around it.  

As for the fever they thought it could be due to:

1. A mild infection from stool passing through my abdominal wall (something the abdominal wall is not designed to do).
2. Inflammation from around the above mentioned Desmoid tumour

The high heart rate they figure could be caused by the fever and by inadequate pain management on my part.  Put simply I don't like taking pain medication as I am worried about becoming dependent on them AND by admitting that I need them forces me to accept the reality that my body needs them which means that my body is not healing as fast as I want it to..

15.5 hours in the ER is not exactly fun and it was easier for me as I was partly stoned from the meds; Tina and Dylan did not have this perk.  And I am grateful for them being with me.  I, like most other people, don't like the ER.  And learning that part of my symptoms might be caused by one of the Desmoid tumours that I have was particularly hard for me to hear as I imagine it was for both Dylan and Tina (up until now I have experienced no side effects from the Desmoid tumours). 

Yep speed bumps.  I survived 9 damn surgeries, 6 weeks in the ICU and according to my surgeons I came close to death 3-4 times so as far as I'm concerned the stuff I'm dealing with now are speed bumps of varying sizes.  This is part bravado to cope with looking ahead at a complex medical situation and a good chunk of straight god damned determination to live a full life.  Dylan Thomas' "Do not go gentle into the good night." sums it up well.  

How am I with all of this? Am I scared?  Yes.  Am I intimidated by navigating a medical healing path where none of my medical specialists has any clear solid answers? Yes, this is like traveling between here and Williams Lake in a car at night with only one headlight, no map, and no high beams. When I had my collectomy there was a clear healing path and a recommended route to get better --> many collectomies are performed each year around the world).  Do I worry that the desmoids might be giving me symptoms? Yes.  I find myself worrying about this at points throughout the day.  Do I worry if they will be able to get the desmoids under control again? Yes. 

So yes many worries for sure.  And I notice that compared to a few years ago when I was receiving chemo for the Desmoids and facing a collectomy I spend less time worrying now then I did then.  This gives me pause and gives me confidence that I am adapting to this time of elevated medical uncertainty in my life more so then I was in the past and as a consequence choosing to live my life while riding the somewhat angry bull at the medical rodeo show.  

When it comes down to it I keep thinking about the serenity prayer and working hard at accepting those things I have control over and those that I don't and then spending time on the former. 

What helps with this is my work with Green Guys on The Drive and getting it off the ground and running for the season.  So far this year we have raised $2,500 by selling 10 shares in the garden, built a temperature controlled greenhouse, planted most of the soil garden and started the first crop of seedlings for the hydroponic garden.  All of this being done with volunteers... with a growing number of people who value community, friendship, and local healthy food.  

Tomorrow (Friday), Dylan, Tina, and I will meet with my Oncologist at the BC Cancer Agency.  Given that Desmoids are so rare (not enough diagnosed each year to do a phase 1, 2, or 3 clinical trial... I think there are 900 diagnosed a year in the United States ) I am fortunate to have my current Oncologist who is one of the leaders in the treatment of them in Canada.  She will have reviewed the multiple CT scans from my stints at Saint Paul's in the last 5 months and will have hopefully put together a treatment plan for me.  Fingers crossed it's one that will allow me to keep working on the garden and keep moving forward in my recovery.  Oh hell forget that I will find a way to move ahead regardless.  Life is for the living.