My body is tense. I am frustrated. So frustrated I want to scream, twist a towel, take an axe and chop a chord of wood. Why can't my surgeon be more supportive and see what I see, Tina sees and all the nurses see as the best course of treatment for myself. Why does he have to be so damned dismissive. Fuck.
I am so tired of having to advocate for my body, my health and what I know to be true. I am exhausted from having to make sure all the different medical teams are on the same page with respect to my treatment plan. My mind is tired. My back aches. Andy head hurts. My sleep is light and edgy as I know with each morning comes a fresh set of challenges. I want a common sense plan that is informed by research and not the ego and I want it now so I can get out of here.
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Fuck. Another small setback this morning. One of the holes that opened up had healed or so I thought until I went on full fluids and then it started emitting stool again. So now the plan is NPO, nothing by mouth until the healing process is much more further along.
Those are the medical facts... How am I? Brings up all my frustration, grief and sadness over having a reasonably complex medical condition for the past six years... All the surgeries, the interruptions (for both Tina and myself), the delay of starting a family (chose adoption as we didn't want risk passing on my genes to our children), the interruption to my career and perhaps more importantly my vehicle through which I get to feel like I am making a contribution to my community. This grief shows up as hot tears and a heaviness in my body and also a release of tension of acknowledging what is going on for me. So at times like this morning my head is also filled thoughts and feelings and worries that I'll never get better, that I will always live with this level of uncertainty in my body. And I feel scared. I feel like I am lost at sea in stormy seas without a boat or life raft at all. My body feels tight and tense. And then I remember my love for Tina and her love for me. And I call her up or text her. And she casts out this life line to me. She reminds me that the NPO is temporary and that I will recover and that all that is needed is time and the readily absorbable nutrition from the TPN. And I grab on to the life line and she pulls me in. And then feelings of gratitude and love fill me up for being so lucky to have such a kind, caring, strong woman as my life partner. I feel the warm deep tears and sobs of love and gratitude for Tina's love for me and my love for her. Damn did I win the lottery. I love you with all my heart honey. Dan I am working hard at staying calm and carrying on as my body decides what plumbing arrangement it will choose. Will there be two exits or one? Will I have to wear one bag or two? It is not the most comfortable place and I also find myself more and more in acceptance of the lack of control I have over what will happen. I'm sure moments of frustration will come and I am bound and determined for them to be moments and not weeks or months. At the same time it is a visually curious process to watch as the tissue at each hole changes in both height and diameter on a daily basis. Yesterday I started on clear fluids. I will see how my body responds to this and hopefully keep calm and carry on :) A week ago today I experienced a setback. A leak had formed in my small bowel where it passes through my abdominal wall to the surface and a collection of stool had formed in my abdominal wall underneath my incision that had just finished healing (newly formed weak skin). As a result three new holes opened up that all started draining stool... this was good in that that they were draining the infection and not good in that there were now three additional pathways for stool to come out. This threw me for a loop and has set my discharge date back 2-3 weeks (I was scheduled to be released last Friday).
For the better part of last week this caused me a good deal of anxiety and distress... Would I have to walk around with three to four illeostomy bags? How long would it take to heal? Would I ever get out of this hospital? Other feelings included disappointment at the efforts I have dedicated to heal and treat my body gently and then having my body throw me another curveball. Feelings of frustration and loss of control also increased... What exactly do I have control over in my body? This lack of control over my body (having an aneurysm that bursts developing an allergy to heparin, forming a 7 cm blood clot in my lungs to name a few) has really shaken me to my core and this recent setback just heightened this feeling. So I had a choice... I could choose to deal with these feelings by zoning out, disengaging, not talking to friends and family and increase my use of such drugs as Ativan etc... While this was tempting I realized that these health difficulties and more importantly the underlying loss of control, fears, and anxiety would be with me for some time as I am facing a six month recovery period plus potential treatment of Desmoid tumours. Or I could choose to keep talking with friends and family about my anxiety and fears. I could choose to remember the serenity prayer which says to focus one's energies on things that can be changed as opposed to fighting the things that cannot be changed. O God, give us the serenity to accept what cannot be changed, The courage to change what can be changed, and the wisdom to know the one from the other So after giving myself some time to accept the setback by allowing myself to feel my feelings of fear, anxiety, sadness, and frustration, the intensity around the setback dropped and I was better able to hear the positive information from my doctors and nurses that with time these new holes would heal and that yes this is only a speed bump. Now don't get me wrong I still do have my moments of doubt, fear and anxiety they are simply less intense and shorter in duration then before. Over the last couple of days, especially today, I am seeing if I can shift my focus from an attachment to a specific discharge date (something I can't control) and instead focus on getting back into some activities that I enjoy such as walking outdoors (today I walked around Trout Lake with Tina), making plans for Green Guys on The Drive this year, as well as regular games nights in my suite at the hospital with friends and family. I'd also like to disclose that I am taking some medication to help me sleep and take the edge off of things. I don't intend for either of these to be permanent and my experience in some situations is that medication and cognitive behaviour strategies plus support from friends and family work well to help me through situations like this. This is a difficult situation and I am not Buddha. 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.
Hi All,
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 Hello, Merry Christmas and Happy Ho-Ho
Well I am further along on the road to recovery than I was in my last email. Knock on wood, my doctors, nurses and surgeons are very pleased with my recovery. Last Friday they put me on a clear fluids diet which pretty much meant broth (salt and water) plus juice (sugar and water) plus jello (sugar, water, and a bit of protein - gelatine). This at first felt great given that I hadn't eaten anything in well over a month. And then it got old. So after three days of this they upgraded me to full fluids and now today they have upgraded me to solid food. So fingers crossed solid food jives with my system too :) The physio team sees me every day too. So in addition to my daily walks I do some steps and some light arm workouts. I am a bit surprised at how much muscle mass I have lost and am encouraged at the rate at which my strength is returning. In terms of a discharge date I am probably looking at anywhere from 2.5 weeks to a month. So yes this means Christmas in the hospital. Argh... I feel a bit bummed by this and one look at the numerous tubes attached to me reminds me that I am where I need to be. With a clearer mind due to less pain and less narcotics for the pain I find myself at times thinking about my time in the ICU. Processing and reflecting on how at times it was a very serious situation for me and how lucky I am that I am recovering so well. I imagine this processing is similar to the processing that each one of you might have done when you visited me in the ICU. I find it scary to think about how serious the situation was and how some of the surgeons and doctors didn't know if I would be able to eat real food or not. At times I find it tempting to ask why did this happen to me? And then I stop myself as I realize this is a question without end. The only answer that comes up for me is that life can be at times very uncertain, unclear and well just plain unfair. I imagine with time will come more distance from the event and this "mess" will fade into the background and life will get back to "normal". I am very grateful for all of you have visited me. I am also trying to strike a balance between restful time to heal and time to connect with friends and family. It is something I am learning to do. On one hand I really do want/appreciate/need contact while I am doing hospital time and on the other hand I need time to rest. So as a suggestion for those of you who would like to come check out my penthouse room at Saint Paul's Hospital you can find me on the tenth floor in room 16. Also if you would be able to come during either of these times that would help me rest throughout each day. 1100-1400 and/or 1630 to 1930 For Christmas Eve: 1630-1930 For Christmas Day: 1000 - 1300 I hope all of you are well and if you are sending me good vibes/energy/prayers keep it up as something or everything is helping me get back on my feet! Dan |
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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