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.
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.
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.
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.
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.