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.  

As some of you know two friends and I operate a small urban farm in East Vancouver called Green Guys on The Drive. You can read more about it here in a previous post.

There are two parts to this project that I like. The first comes with the curse of being an engineer at heart, meaning that “if it ain't broke it's not interesting”. This means each year we find ourselves tinkering with the farm to make it produce more food. This year's “fixes” include adding a soil garden to our harvest and a greenhouse for our seedlings.

Given that the two other co-founders have quite committed professional obligations with not much spare time and the fact that I am still in recovery mode it's a bit of an ambitious project for me to take on at the moment. I plan on accomplishing this by asking for help from my community of family and friends who have come to value the garden (thank you already to Dylan, Mom, Jeff, Tim, Dennis, and Alex); which is the second part of the project that I like. Creating and maintaining an experience of community for myself and the garden's members.
Google offers two definitions for the word community:

1. a group of people living in the same place or having a particular characteristic in common.
2. a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

As I've grown older I've found myself much more attracted to the second definition of community and have found myself in search of situations where I have the experience of community. This search was not always a conscious one. Until my late 20's it showed up as a search for meaningful hobbies, fulfilling relationships, and a strong desire to have my best friends live in the same damn city that I did so we could hang out.

It wasn't until after my Whipple surgery when I was talking to a naturopath about some of the struggles with my current employer, my lack of hobbies, and an often felt experience of social coldness in Vancouver (Tina and I had recently returned from Thailand and were finding it difficult to re-insert ourselves into the social scene here in Vancouver) that my search for community became a conscious one. It became conscious after she suggested I cultivate some hobbies that could help me create a sense of community for myself.

This piqued my curiosity and started a deliberate exploration of the idea of community and what that might look like for Tina and I. I'm not going to lie, while the experience of community was not new to me (I could remember three distinct moments when I felt a strong experience of community), the steps required to recreate this experience were a mystery to me. I didn't really know as a young working professional how to create it for myself and Tina and thought at first that it was something
that would just “happen” with time. Not so.