Over the past week I have been provided with several day passes to go home. Home, far away from the four walls of my hospital room with its sterile walls and strange noises. Going home was bitter sweet for while I felt good to lie on the couch and listen to the familiar sounds of home like the fireplace and my family's voices it was also bittersweet as I felt grief, loss and sadness at knowing how much time at home with my family that I had missed. All the shared meals, the cuddling on the couch, having friends over for dinner, cooking meals for my wife (something I love to do)... and knowing that when I get back it will be the same and it won't for a while as my recovery will still take some time. My amazing and lovely wife Tina assures me that life is just on pause and we will resume the lives we made for ourselves in good time. She is an amazing rock of support for me. I'm not sure where I'd be without her.
Out of the blue I found myself in the hospital and in three months have had 9 surgeries, 5 procedures, just about died 3-4 times and spent six weeks in the hospital... all because of an apparent congenital aneurism that burst and bled into my abdomen. I am not a religious person. I don't understand how or why such a benevolent god would visit such things as cancer on infants and children... so in lieu of no god to curse I am left with the uncertain, haphazard and beautiful thing called life to curse.
One week shy of three months ago my life was rudely interrupted. A long medical rodeo ensued which I don't want to describe here as its still a bit too close. Now that I am doing much better, am off the morphine and pretty mobile which means I am much more alert and time passes much slower in the hospital. At the same time I don't have much structure to go back to when I get home as I don't have a job (I quit my job 1 month prior to this all starting). So there are two challenges that I am facing that are non medical at the moment. First, what can I do each day in the hospital that keeps my head engaged and helps pass the time. Sitting in bed or in a chair or walking and only thinking about my medical situation drives me nuts and I know I need to make a change.
The second challenge has to do with how do I set up my life when I get back home. When I go home I will be on TPN which is food fed intravenously.... this means that for 8-14 hours a day I'll be hooked up to a machine at night/evening/early morning and the rest of the day I will be free to leave the house and lead a normal life. The plan is that this should allow my guts to continue healing to a point where I won't need the TPN.
So some big stuff. So this blog is a way for me to help feel connected to you my friends and family and anyone else who finds interest in my story/experience. Plus it gives me some structure. This should help with the increased anxiety that I have been having.
If anyone has any suggestions for other things that I can do to help pass the time that engage the brain and provide value to others that would be great. You can leave them in the comments section.
Well its that day of the year again. Normally I'm pretty stoked about this day. An excuse to get together with good friends and family and have a good time. This time around I have mixed feelings about my birthday... the first being that I am still in the hospital and grappling with making sense of how to continue on with my recovery (probably another 2-3 months once I make it out of Saint Paul's. Another feeling is some sadness that I am still in the hospital on my birthday as I thought I would be out of here. At the same time my brother and wife have arranged a dinner out to a restaurant close by (I do get day passes) and I am looking forward to this. Regardless of missed deadlines it it is a sign that I am healing and getting better.
This update has been a long time coming. Part of the delay I realize is not wanting again to be known as that guy in the hospital with all his medical problems... After all this is my third hospital stay in five years... And yes the rational and reasonable part of me knows that you don't think of me like that.
My primary doctor returned Sent from my iPhone
While I am happy with his prognosis I also find myself feeling scared at how things could have turned out for me... I dodged a bullet for sure thanks to a great medical team and all of your support.
I have also learned that the most likely explanation for the abdominal bleed (what landed me in ER) was a congenital aneurism. So something that I was born with. Damn life is fragile and unpredictable. There are no guarantees.
So I sit with these feelings and thoughts sometimes. I would sum these up or wrap up these thoughts by saying that this most recent and unplanned medical rodeo has shaken my belief in my own mortality. And I feel a bit shaky when I think about going back into the world and living my life after experiencing a pretty severe disruption to my own mortality. The question for me is how to get back to doing the things I love while also holding this awareness of the fragility of life?
Other experiences include some feelings of loss over missing out on the last two and a bit months of my life... But as Tina says life is just on pause for the moment and I have a long long life ahead of me. I think there are also feelings of loss over the change into anatomy as well... One plumbing arrangement to another.
Maybe the processing of all this is one reason why I don't find myself reading much or taking up another activity; and instead find myself wanting to watch Netflix. Now if only I was better at giving myself permission to do just that. Life is short and precious... Why waste it in front of a TV? I'll get over myself.
It's a long road of recovery and this isn't the first time I've done it and I'll do it again. 2016 will be an interesting year as as soon as I am healed from this surgery I will most likely start chemo to help control the Desmoid tumours that I have. These are non cancerous but can grow to impinge upon the functioning of other organs. The good news is that I have taken the chemo before and it worked and it did not have the toxicity to the body as other chemo does (I had no hair loss etc...)
Given my unemployed status at the moment I might just ditch traditional employment and garden from Spring to Fall with Green Guys on The Drove while finding some way to earn a modest amount of money.
Yes... It's going to be an interesting (aka challenging, eventful, fun) year.
I hope all of you had a good holiday and that the new year is looking brighter for all of you.
Lots of love,
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.