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.
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.