A number of years I was going through a particularly crazy time and I wrote a blog post. While I was writing, it occurred to me how different a post can be when written from "within the storm" versus being written some time afterward.
Writing from within the storm is raw and uncensored, and can provide a rare and unique peek in to an experience. But it can also lack cohesion; the scribblings of a lunatic inside the asylum wall.
Writing back on something, even if that something is only hours or days behind us, is where we assign meaning. The narrative that we build around the events of our lives typically happens on recollection, not in the moment of the experience. The downside of this process is that everything has the potential of becoming part fabrication; a composition of the real experience plus the meaning and value we assign to it based on the beliefs and biases that we hold at the time.
And yet, sometimes that pause between the experience and narrative allows for a fine-tuning; a way of eliminating the static enough to hear just the line of music that you want to express.
I have considered writing this post for some time. Of course, I didn't have my laptop in the hospital, so the earliest I could have written it would have been the day after my discharge.
But in reality, my brain wasn't ready. For much of anything, actually.
Yesterday afternoon marks the one week mark of being out of the hospital. And my continued recovery, along with my increasing level of boredom, seems to have created the spark needed to finally write.
That said, I am not going to drone on and on about every little detail. There are lots of little things that happened that were interesting or entertaining at the time that are just not going to be so now, no matter how compelling I am at retelling it. So I will spare you those details.
I was admitted to the hospital mid-day on Monday (November 9th). The day consisted mostly of hanging out with Rose and eating broth and jello. Oh, and discovering a newfound love for popsicles. I also had some x-rays, took some pills, and was marked for a potential ostomy. To be honest, I don't know what else we did that day. Once you are connected to an IV pole it seems as if life slows to a crawl, as everything becomes more cumbersome and requires more effort.
Tuesday morning, bright and early, the surgery team came in for a last assessment and pep talk. I showered up and got wheeled down to pre-op. I remember nothing about the epidural. I think all anesthesia drugs work extra well on me.
I do have one vague memory, almost as if recalling an old dream. I remember someone saying something like "Tim, you have to keep you hands down. Keep them away from your face." I don't remember how many days after surgery I finally remembered this, but I am wondering, if the memory is true, if it was when they were putting the NG tube in place, because it would make sense that I was trying to pull that shit back out. :)
Obviously, I have no memory of the surgery. I actually have only faint memories of the night after surgery.
But it's worth writing a quick recap of the surgery, because I feel very fortunate with how it went.
The spleen I became so attached to about a month ago did get taken out. The amount of disease on and around it was too much to try to cut away. As I mentioned in a previous post, the risk of bleeding from the spleen was too high (and not something you want to add on to an already long and complicated surgery.) The distal portion of my pancreas was also removed. A neighbor of the spleen, it had just gotten to be a bad neighborhood all around, no thanks to the crack house of my disease that moved on to the block.
The area of disease on the floor of my pelvis near my rectum, fortunately, came out pretty easily. This was tremendous news. Along with that, no area of my colon needed to be resected. This all meant that I would not need an ostomy, permanent or temporary. And if I had to make a list of wins, this one would be at the top.
I also got to keep my gall bladder, which is nice. I am all about keeping the organs that you can, you know? Plus, fatty foods. Win.
There were some pretty heavy areas of disease up around the right side of my diaphragm. Dr. Foster thinks that there was definitely enough to cause some diaphragm restriction, so perhaps all of my breathing issues were directly related to this after all.
From what I have been told, the surgery part of the procedure went well and relatively quickly. I believe Dr. Foster checked in with my family and gave them an expected time of completion. While he was out of the operating room, the heated chemotherapy treatment (HIPEC) was being administered.
Apparently, after the HIPEC treatment, they discovered another "patch" of disease on the back side of my liver. Dr. Foster determined it would be best to remove it, so rather than close me up, they went back to work, adding time to an already long surgery.
Of course, this was of some concern to those waiting in the waiting area, as they thought the surgery was going to be over soon. But because I wasn't out there, I won't write about that perspective. I am sure if you ask Rose or my family for their story of that day, you will hear what things were like for them out there.
The take-away of all of this is that I feel very fortunate with how things went. I had all of the confidence in the world in Dr. Foster but I didn't know what cards my body would deal him. And while going through this surgery wasn't fun, I am happy with how well it went.
If you asked me to describe that night I would say I was in a dark room on a boat that was sailing out in a storm. I know that I wasn't, of course, but that is the felt-sense that I had. I felt as if room was always dark, and that things would come and go in waves. I don't really remember any major pain or discomfort. I remember the kind and compassionate voice of the nurse, and I remember Rose frequently saying "thank you" to her. I knew that Rose was on my left, between my bed and the window, and I knew the nurse came in from my right. Beyond that, it was an ebb and flow in and out of consciousness.
I don't remember waking up the next morning, specifically, but I do remember I was sitting up in bed when the pain team came in. I also remember their shocked faces when they saw me. One of the doctors said, "Oh my god, you look great for the day after that surgery."
This is a theme that would continue throughout my hospital stay. "You are not the norm," "you are an atypical Foster patient," etc etc...
I have no magic words for this. I am extremely grateful, yes. I may also be very lucky. And it helps that I am probably younger than many of Dr. Foster's patients. But from a behavioral perspective, all I can say is this: go in to these endeavors as vital and as healthy in body, mind, and spirit as you can.
Positive mind, positive outcome. That's not a promise that things will always turn out rosy and totally in-line with your desires; you can't control everything. But control what you can. Thoughts and beliefs are so powerful.
And that seems like an appropriate segue in to what happened next....
The dark night.
In addition to my epidural, I was on a PCA, which allowed me to click a dose of Dilaudid (hydromorphine) every eight minutes. I found people's instructions on when to use it a bit ambiguous, however. On one hand, it seemed clear: if you have pain, click the button. But the second most commonly said thing was: don't let the pain get ahead of you. This implied you should do some preemptive clicking.
I was not in the mental state to distinguish between those two things very well, and Rose, I'm sure, was more inclined for me to click than not click. The idea of "getting behind" on the pain seemed like a really bad option.
At any rate, I clicked. Quite a bit. Not every eight minutes, but probably every 8-20 minutes. We were so concerned that I would fall asleep and not click for hours, and then wake up in tremendous pain, that Rose set a timer on her phone. (God bless Rose, who fought off sleep all night to help in this endeavor.) We thought we were doing what we should be doing.
A quick aside...
In addition to the normal IV/telemetry alarms, there was one alarm that occasionally went off that sounded different. Our ICU nurse told us that that alarm sounded when something not so good was happening somewhere else. It went off in all of the rooms. It was subtle, but ominous.
And it was that alarm that I heard around 2:30am, followed by a whisper, "Tonight is the night you will die."
The rational part of me shrugged it off, but every time I closed my eyes my mind was full of dark, disturbing (even evil) images. My only escape was to open my eyes, but even that didn't stop my mind from replaying the whisper, "Tonight is the night you will die."
It might be interesting at this point to veer off on a tangent regarding my deep inner beliefs as to why I was experiencing this disease and surgery in the first place. Because armed with that information, it is easier to see why, along with my brain being bathed in Dilaudid, I couldn't shake darkness of this experience.
But if I do that right now, I will disrupt the whole thread of this story. So let me come back and address that some time in the near future.
To continue on with that night, the darkness wouldn't go away. At 3am I finally woke Rose up and told her I couldn't sleep. She spent 20-30 minutes reading me all of the kind Facebook comments that people had written on her post about my surgery. It was a nice distraction, but it wasn't enough to create any peace.
I felt like I was trapped in a small dark box, filled with disturbing images. Every time I closed my eyes, they were there. I tried lots of mental techniques to claw my way out, but nothing worked. (If you have ever done any "energy work" before, of any kind, I can tell you I felt completely "cut off." I couldn't connect up, I couldn't ground, I could bubble up. Whether this was a matter of not being able to properly visualize/concentrate, I don't know.)
Eventually, my mind went to something Dr. Foster had said in my appointment with him the previous month: in about 1% of cases, some patients, especially the younger ones, can go in to adult respiratory distress, which is a very serious condition.
I know, I know.... Now, looking back, it seems like an odd place for my mind to go, but that is the negative spiral I was in at the time.
Eventually, Rose went and got the nurse so that I could ask her about it. The nurse said that in those rare cases of adult respiratory distress, it typically happens upon extubation, which I was more than 36 hours out from.
The reason why I bring all of this up is because, rationally, I knew all of this. I knew I was caught in a negative state, I knew I was probably not in any real danger, and I knew that it was probably all due to the pain meds. But none of that made a difference. I was caught, and I couldn't find a way out.
And I am FASCINATED by that.
But again, before I go off on to a tangent (we will save them all and eventually circle back, don't worry), let's keep moving forward.
Describing my difficult night to the doctors the next morning was even more painful. I kept trying to describe it but they weren't getting it. No, they weren't dreams. No, they weren't technically hallucinations because it only happened when my eyes were closed. Etc etc
The end result of it all was this; after that night, I rarely pushed that damn PCA button. I did when I really needed it, or when I knew I was going to have to move or go for a walk, but that was it. I may have pushed it less than ten times in my final 3-4 days in the hospital.
That dark place never returned.
And that is the end of Part One.
Coming very soon - Part Two: The NG Tube Blues, Awesome Nurses, and the No Good Very Bad Day