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.
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.