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:
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. The first experience of community was growing up in a middle class neighbourhood in Kitsilano with Dylan where there were several families on our block with kids our age who we became fast friends with. We would spend our weekends and after school time playing in the back alley or in one of our backyards. During the summer our parents would have joint picnics at Jericho beach which was within walking distance. No formal play dates or commuting required. The second experience was when Dylan and I were growing up on our Dad's Guest Ranch. We were part of a team of employees who worked hard to create a positive experience for our guests. And yes when everything was going well there definitely was a very strong experience of fellowship among the team... and of course when things weren't going well this would evaporate and tribalism would set in. From where I sit now I remember the periods of fellowship much more than rough periods of tribalism.
The third experience of community and definitely the most influential on my life was my time at Big Bar Elementary; a one room school where Dodie Eyer was the sole teacher and she taught anywhere from 12-18 kids ranging from Kindergarten to Grade 7. How did she do this? I am not entirely sure although I know her ability to create a strong fellowship among the students and fostered a value set that encouraged the older kids to look out for, and help the younger students definitely helped. I can remember Dodie reading books like Lord of the Rings, Narnia, The Hatchet and many other fine novels to us for an hour a day as well as never being assigned homework and still entering Grade 8 at the top of my class. I will also never forget the many recesses and lunch hours spent playing Kick the Can in the Fall and Spring (a favourite) and ice skating on the school's ice rink and sledding in the winter time on the school's sleigh hill. The school was also the centre of the community and held community events such as Rendezvous (a gathering in early Spring with contests like who can boil the water fastest or cook bannock given a pot, snow, kindling and a match), Big Bar Turkey Shoot (a marksmanship contest using rifles where the winner for each category earned a prize such as a turkey), Halloween (all the kids in the community would gather at the school in their costumes and walk around the room collecting candy – there was also a pumpkin carving contest and pinatas), and last but not least a community Christmas concert. Reflecting on these three experiences of community I realize that all of them had people living in relatively close proximity to each other engaged in a common interest or activity. So while I moved from one job to another in my late 20's and early 30's I continued to experience a yearning for community similar to my childhood while also spending some time thinking about how to re-create this for myself and Tina here in Vancouver. Work and taking care of my physical health though continued to be a priority and I didn't make much progress on creating an experience of community until I reached a brick wall while trying to manage my health and my share of the mortgage. A year after being diagnosed with desmoid tumours and receiving a year of tamoxifen therapy to no effect while also working for a local tech company as a lone wolf (I was the only member of the learning and development team and had little to no support or camaraderie at work) while also hardly talking at all to anyone about my health struggles I learned what near crippling anxiety felt and its connection to severe insomnia. This trifecta tanked my quality of life. Fortunately my Oncologist ended the tamoxifen therapy and put me on four months of chemo. I say fortunately for two reasons. First, the chemo stopped the growth of the desmoids and actually caused some of them to start shrinking. And second, chemo was a wake up call for me and provided a reason that was acceptable to me to take a medical leave from work. I took nine months off. Next to marrying Tina and spending two wonderful years in Thailand it was the smartest thing I have done. During this break and among other things I sought support from Inspire Health, a supportive cancer care organization, who advised me that among some small tweaks to my diet I should develop a hobby or two to help me through the chemo.... up until this point in my life I hadn't really taken hobbies that seriously other than satisfying my travel bug when it started acting up. Going on chemo changed this. I took up pottery and came across a design for a vertical hydroponic vegetable garden. I asked my friend Brandon if he wanted to build it with me. He said “hell yes”. And so started our somewhat haphazard foray into vertical hydroponics. At the same time I also came across the idea of COMMUNITY supported agriculture and we were away and running with our first growing season (thank you friends and family for trusting us with your money to get started during that first year). Now we are in our fourth year and I have found an experience of fellowship with people living in the same city who all share an interest in community, local food, and local economy. This has been huge for me and has and continues to make a big difference in my day to day quality of life. I wouldn't trade it for the world.
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![]() Tina asked me after my hesitation to trying out her new idea for pouching my fistulas (holes in my abdomen). With a grimace and a smile on my face I said "leak". To which Tina said "So kind of just like now where they leak and the longest they last is 24 hours?" Yep i replied with a smile and some more laughter as a flood of relief came over me as I realized I had reached another level of acceptance over what is as opposed to what I would like things to be (one fistula and one bag that only needed changing every 5-6 days). I feel so supported having a partner who is with me every step of the way and who is able to be with me while always valuing making the most of the life we have together. Other events this week involved a follow up visit with my surgeon who suggested I try eating some food on a more regular basis (up until then I had been pretty much eating and drinking minimally - apple sauce with meds and a handful or two of cheerios a day. This would help me gain weight and strength which would help me heal more then just being on TPN. He said he sees maybe 1-2 people like me every two years in his practice so he will learn just as much from my experience healing as I will from him. Not what I want to hear and well at least he is honest with me. So what did I do after my appointment? Stopped at Safeway and bought a couple bags of potato chips and some digestive cookies... essentially food that absorbs water (potato chips) and that is easy to digest. All that processed food I spent years avoiding. The next stop was a visit with my brother sister and by brother in-law and a prompt opening of the bags of chips. DELICIOUS! The next day I was feeling particularly energetic and/or feeling pretty positive about my future and the progress Tina and I had made so we elected to go for a walk up Lynn Canyon to bring some closure to my six week stint in the ICU. While I was there, and as some of you might remember, I kept saying that when I made it out of here I would find a spot on the Lynn River and have a beer (even thought I didn't normally drink beer - I chalk this up to the morphine and the fact I hadn't drank any liquids at that point for a long long long time). So Tina and I went for the walk, the selfie and twisted tees... okay you'll notice mine isn't opened... I've learned that my body loves to give me splitting headaches even from the smallest amount of alcohol. Did I experience some closure? Yes, and with this some sadness to over remembering just how hard some of the hard moments have been. I was also dead tired when I got back and knew I had over done it so I popped two Tylenol and spent the rest of the day on the couch. I spent that night, the following day and night with a fever, high heart rate and an achyness in my bones. I initially chalked this up to dehydration and pushing myself so used Tylenol to control the fever and gave myself some fluids intravenously from home. The symptoms didn't disappear Thursday morning so Tina and I drove myself to the ER at Saint Paul's where I was promptly given a bed and Tina and I set out for a day of sadness and uncertainty... Here we are back at the hospital... What did we do to deserve this? When will our luck change? What is causing these symptoms? Is there a perforation in Dan's small bowel? is there an infection? And then once the tests were done (blood test, blood culture, and CT scan)... when will we get the results? Will the person who interprets them be familiar with my anatomy and high enough on the medical ladder ring to have the experience and education to interpret the results correctly? A logic game on my iPhone got us through some of the time and then our friend Benamm showed up and visited with us, followed by my dad. Shortly thereafter I was in a full on conversation with Benamm and my Dad about American politics at which point Tina made the point that the cause behind my symptoms can't be that serious and my symptoms must have decreased substantially or else I would not be talking about something I was interested in. Turns out her prognosis was right. At around 10 pm a senior resident came by and gave me the all clear and Tina and I left the hospital shortly thereafter and returned to the comfort of our own home and bed. Whew! This morning I was texting my good friend Jesse and giving him the update that I got to go home at which point he asked if the doctor's were able to explain the cause of my symptoms. At which I realized that while they had explained none of the tests showed a cause they hadn't given us another definitive explanation other than perhaps trying food and maybe overdoing it or maybe having a bit of the flu. I said replied saying that no they were not able to give a definitive answer and he asked isn't that a bit worrying. A question that caused me some pause. Truth be told I was okay with their explanation. i was okay and comfortable with the uncertainty contained in the doctor's explanation as I knew that if the symptoms returned I could return quite quickly and I knew this answer allowed me to get home and back to life and not in a holding pattern in the hospital. I was also aware that I have a higher tolerance for uncertainty with my health then I used too... and truth be told there are many aspects of my health that are worrying... will the desmoids cause a problem? Will the multiple fistulas heal up? will i regain the strength, mobility and habits that I had before all of this? Will I be able to eat a normal diet? I need this tolerance for uncertainty or I would go nuts worrying about all of these what iffs... So the higher tolerance for uncertainty helps and so too does focusing on the present... What am i doing this morning, afternoon, evening. What do I want to do and what do I have to do? What am I doing this week and sometimes what am I doing the week after next. That's about as far out as my flashlight sees at the moment. Two exceptions are my relationship with Tina and Green Guys on the Drive, these extend the flashlight beam much further into the dark of the night. This helps as then I don't need to worry about answering the question of what do I do if I am on TPN permanently or what do I do if the desmoids start acting up or a blockage forms. I tell myself I have a good support network and am adaptable and then remind myself that regardless of the answer or outcome I do have today and a high probability of the week to do what I want to do. This is not to say that I completely ignore the questions that bother me. I do have rough answers to those what iffs and do spend some time thinking about them.. some of it structured and some of it where my mind does get away from me. And its much less time then it could be. Okay its 1125 PM and I can feel my back getting tired. Last piece of news I'll mention is that for lunch today Tina and I went to a noodle house where I had rice noodles, Vietnamese pho broth, and shredded chicken. Heaven. By the way Tina's design worked and it lasted 72 hours... and who knows it might even last longer. ![]() Took a big step forward today. I went with my brother Tim to purchase materials for the construction of a green house... a big part of my recovery plan. About three years ago when I was on chemo for desmoid tumours I received some help from Inspire Health - a supportive cancer care organization funded by MSP. One of the things they suggested was to develop a hobby... you know... something other than work. So one day while browsing the internet I came across a video describing the design of a vertical hydroponic garden. I pinged my buddy Brandon asking him if he was interested in building one with me and now three years later we have added another co-founder (Win) and have a farm (Green Guys on The Drive) that last year fed 22 people from May to October. This year we have plans to feed 26 people with produce from the vertical hydroponic garden and the onsite soil garden. We do all of this using a community supported agriculture business model and if we are lucky we break even at the end of each year (okay, we have yet to break even ;) ) And we have lots of fun growing the veggies while building community in East Vancouver. The green house is the big addition this year. It is us putting together our learning about how to grow seedlings from seed in the fastest possible way with the lowest mortality rate. The plan is that this should also increase yields from the garden. So how is this all part of my recovery plan? It keeps me engaged mentally engaged. Since returning home from the hospital I have created an operating budget for this year and come up with a design and budget for the green house. I have also worked with Felice to create a brochure to help sell the 10 shares in this year's harvest (there are 2 remaining at the moment). Physically, it provides a set of activities (building the greenhouse and operating the garden and harvesting produce) )that initially I will need help completing and hopefully with time I will be able to do do more and more on my own (or at least won't be dependent on their help).
Emotionally and spiritually it helps meet my needs of having an experience of contributing to my community (helping to grow food for 26 people) while also helping to build community in the area of Vancouver in which I live. Both of these are incredibly important for me as I am not working (perhaps the norm by which most people experience contributing to society - me included). Last, it also helps me feel a part of a community of people with shared values around community, healthy food, local economy etc.... Today was another big step in helping to make this continuing dream of both myself and the other co-founders - Brandon and Win, as well as our members a reality. For me personally with taking these first few steps I feel both excitement and a bit anxious. Excited about putting into practice a new way of growing seedlings based on our experience and excitement over the quantities of greens that will be produced. And anxious over thoughts of wondering if I have the strength yet to build and operate the garden yet. This is countered by the fact that I have friends and family close by who have said they will help out and also by my belief that following one's dreams and passions puts one in touch with their life force which is healing in and of itself. This Saturday (day after tomorrow) we build the green house. Stay tuned for the pics! Sunday morning. Feeling stuck. I go lie on the couch and do some breathing. Thoughts of frustration over what has happened and my future recovery. Been here before, need to move through it as I know that anger and frustration are usually secondary feelings. Clench one hand into a fist and then the other. So tight. My nails dig into my palm. I continue to breathe. Keep breathing.
I think of all of you, my friends and family who care about me and the phrase: "Sometimes it's okay to not feel okay" enters my head. The anger starts to melt away. My knees and legs begin to tremble and the tears come as my fists let go. Sometimes its okay to not feel okay about... spending 4 months in the hospital almost dying 3-4 times navigating a long recovery not eating any food or drinking any fluids having four holes in my abdomen emitting stool being tied to a machine at night to give me my nourishment More tears and trembling. Release in my body and mind. After twenty minutes the storm has passed. Off to help Tina get ready for her girls trip to Harrison Hot Springs and then on to a party her friends are putting on for me as a welcome home from the hospital. Sometimes its okay to not feel okay. A good mantra to help move through the lows of recovery, and perhaps just as helpful as the practice of actively choosing to engage in life and make the most of it. ![]() The Good: Making it home and sleeping in my own bed with Tina. Peace, rest, and comfort. Taking a nap at home on the couch and hearing and feeling the familiar sounds of home: the ticking clock, rain hitting the window, warmth from the gas fireplace and from our electric heating pad melting away tension in my back. Privacy and greater control over my life. No nurses coming to take my vitals or blood. No doctors or surgeons peering in at me during any hour of the day. A big deep breath and a sinking into the softness of home and with this more comfort in my own body. Developing mastery over giving myself TPN and again an experience of more control over my nutrition and life. An experience of progress of taking care of my healing body. Working on my hobbies and projects in peace and quiet. The Bad (or the sharp edges) Now to understand this I need to show you a diagram of part of my anatomy. So four holes emitting stool and two ileostomy bags plus a dressing. It's a mess. So what's the plan? The plan is for me to get 100% of my nutrition for the next two to three months from TPN while not eating or drinking anything. Yep no food. The hope is with decreased intake there will be less output and maybe one or more of the holes will heal up.
Will this work? Yes I worry about this primarily because managing the current situation takes about an hour every two days and doesn't look pretty. I don't want this to be permanent AND damn this also might be one of those situations where I might have to more adapting then affecting a certain an outcome. Part of the tension in my back and shoulders I am sure is due to this. And then there are moments, minutes, hours where I am able to let go of control and have some faith, confidence, trust, belief that with letting go of control that this situation will become more manageable and I will adapt. And when I am in this space my body and mind relaxes. Another edge is FOOD especially FOOD + SOCIAL situations. First of all I love cooking and eating and like most people in my position am missing just eating. Second gatherings with friends and family over food are different. Sometimes I am tempted to avoid the situation so I don't have to experience my feelings of missing food and an experience of being an outsider as being the only one not eating. I have yet to do this as I realize that if I don't join the meal then I feel excluded from the group. Kind of a catch 22 but not really as I am finding that if I focus on the people and the conversation I feel included and I find myself not focusing so much on the absence of food in my stomach. And I also feel stronger in my body and spirit knowing that I am living my life and not letting this medical situation run my life. The next phase will involve cooking for Tina and for friends and family (I might yet give that one a week yet... baby steps) Reflecting some more while writing this blog post I realize that the underlying theme and edge for me throughout is morning, noon and night continuing to choose to face the what is of my medical situation and choosing life; choosing to make the most of it, choosing to engage with those around me, choosing to stay engaged in my hobbies, choosing to be a good husband, brother, nephew, uncle and friend. I am learning that there is no magic here. It first involves accepting what is and then throughout the day making the choice to choose an engaged and passionate life over a life spent in the muck of worry, control, and non-acceptance. My experience is that this is a muscle of mine and that every time I choose life it will get easier. This is what got me through the past surgeries and it will get me through this medical rodeo ride. A little note here... I'm not a Bhudda and I'm still working on acceptance so sometimes it takes me some time to choose life... and this is not to say that I don't allow myself to feel down or sad. I do. And then I get on with it. The Ugly: This is pretty clear. Dressing changes etc... Don't worry I won't post a pic here. Let's just say that changing diapers will not be a problem for me. With the end of my four month stint in hospital (fingers crossed) and my return home I find myself in a familiar situation (good) AND one with some adjustments (recovery mode, new anatomy, new daily schedule etc... I am bound and determined to make the most of this new adjusted life of mine and get back to doing the things that I want to do.
When I started the blog I was in the middle of my hospital stay and in a situation with much more uncertainty than the situation that I am facing now. And the blog name of "Oh Life Go Fuck Yourself" was my way of fighting back against the lack of control and high degree of uncertainty that both myself and my friends and family were facing. I am now wanting to shift my focus to healing and getting on with life. Renaming my blog is one small component of this. Stay tuned! All I can see is a small section of the room I am in. With my head and chest wrapped in surgical cloth I imagine I am in the process of being turned into a mummy. Thankfully this is not the case and I am instead in the middle of the third attempt to remove a filter from the vein supplying my heart with blood that was protecting blood clots from entering it. They give me some fentanyl for pain which helps as they then give me a local anesthetic in my neck where they then insert a succession of wires, catheters and x-rays to first of all see if there are any clots trapped in the filter (if more than 10 percent they stop and try again later - this part is called a venogram). Relief, they find that the filter is clear. At this point the only pain I feel is a pushing and pulling at my neck. They then proceed to try and "lasso" one end of the filter with a wire snare... Yes folks this is the Wild West. After about thirty minutes of this my right side of my back is getting pretty sore from tensing up every time they tug and pull and I ask for more pain medication. It helps. Not being able to see much of anything I focus on the conversation in the room. Turn the catheter... Okay there now advance... Extend the lasso... Wait wait ok missed the hook lets back out and try again (they are getting visual feedback from a live x-Ray). For me throughout most of this experience I am surprised by my lack of anxiety. Partly this is due to the pain meds and most I think is due to a level of trust I have developed with the docs in the interventional radiology group... This being my fifth or sixth procedure there.
Only when it had been an hour of playing go fish in my arteries did I start to feel a bit anxious. Luckily this was right when they lassoed the filter and were able to remove it. Another wild Wild West experience from the wizards/cowboys in the interventional radiology group. My last night (fingers crossed) in hospital. That's right, tomorrow I am heading home. Back to Tina, my own bed and my own roots. As I write this I am looking out over Burrard Inlet, English Bay and West Vancouver. The sun is just setting. One of the many beautiful sunsets I've seen here.
Tomorrow will be my four month anniversary of my stay in hospital. It's been a long road. Many many memories. Most of them are none that I would wish to repeat or pass on to you. And there are some that are filled with warmth, tears, and heartfelt connection. All of you visited me in the scary days of the ICU and helped to keep the darkness at bay. The many many visitors since my time on the tenth floor. I feel so grateful for having all of you in my life for as I've observed there are many here who have no one in their lives. This week I can remember pulling out of our underground parking on route back to the hospital for the night... Not generally something that Tina nor I looked forward too. In the early evening darkness I thought about the challenge of this recent medical rodeo ride and the short and possible long term lifestyle adaptations involved. And My body felt tired and my chest tightened a bit. And at the same time I thought this is my life and it's a great life I have so many things to be grateful for... My relationship with Tina, the quality of friendships and relationships and level of connection with my friends and family (all of you). I felt stronger in my body and more confident about my ability to cope and adapt to this rodeo ride. Gratitude gives me strength to adapt and keep moving forward. On this last night and this last wonderful sunset from my room on the tenth floor I feel at peace with where I am at and an acceptance that my healing journey will require more time and patience. And I feel positive about my future.
God damned I feel fatigued. My head is swimming in these thoughts. I feel like my head is in a white fog constantly searching for an answer to these questions. Searching for a plan to get me from where I now... a place with no solid agreed upon plan to get me from eating and drinking nothing to a place where I am eating and drinking again. A plan based on data and clinical experience that passes the gut check of an engineer. This fog is uncomfortable... I can't see the yellow center line of the road... I don't know if I'm on the right side or the wrong side.
Hopefully I'll get more answers on Monday when my head surgeon returns and he'll be able to pull the teams together and give me a plan with some assurances that it will work and an explanation for my engineering mind on why it will work. I will be heading home on home TPN (Total Parenteral Nutrition). It is delivered intravenously every night over 14 hours (8 pm to 10 am). I am currently receiving training on how to do this myself for when I get back home. The main advantage to TPN is my body is guaranteed to get the nutrition it needs AND it will allow my bowels to rest and heal. The plan and hope is that over time my bowels will heal and I will be able to eat more food and absorb the nutrients from it and then discontinue the TPN. Oh and It will also allow me to go home, home to my life with Tina. How am I with this? I feel excited... Light and warmth in my body and mind at the prospect of getting to go home. I also have thoughts of what activities TPN will help me get back to in the short term and the long term. Short term is time at home with Tina and cuddles in bed and on the couch as well as an environment that will allow me to start budgeting for this year's Green Guys on The Drive season plus resume helping my friend David complete a video on Sexual Assault and Fetal Alcohol. With these thoughts comes a relaxation and letting go of some of the tenseness in my body. Long term I think about how this will serve as a stepping stone so I can heal and regain my strength so I can get back to hiking, camping, biking, swimming, and traveling. These possibilities give me great excitement and reacquaint me with my great enthusiasm for life that John Denver expresses in his song "I want to Live." On the flip side I have fears about TPN. Given I need to hook up at 8 PM I worry about the impact it will have on socializing as I will need to be at home to hook up. After I'm hooked up I can wear a small back pack and go out (Brandon and others I'll let you know when I'm ok about jokes on this topic ;) ). I also worry about the impact it will have on my work life... I feel heavy in my body with this thought and an emptiness at some of the night time activities that I could miss out on... And I know I will adapt.
Also At this point I'm not comfortable doing a nine to five job with a pack on my back and I know this is just temporary and this brings me to my last big fear... That my bowels won't heal enough and I will be on some form of TPN for the rest of my life and will greatly impact things like travel to far away lands and parenting etc... These fears feel like a deep dread in my body... Like an anchor dragging me down to the bottom of the ocean at the thought of what I would miss out on. For me these different light and dark thoughts and feelings are not separate in my body. I have the light AND the dark. I am learning slowly how to hold both in my body and mind at once. It's a full life. |
Dan and CompanyWe got this... This has been the mantra of Dan's friends and family as they help him navigates a difficult medical rodeo ride. This blog contains entries from Dan as well as his friends and family. Archives
December 2016
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