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.
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.
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!
Dan and Company
We 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.