The Whole Story: Part Ten - I guess that's better?
My preop experience was much different this time than last time. Where the time before I was laying there waiting with doctors coming to see me every half hour or so, this time there was a line of doctors in the hall waiting their turn to come in because I guess I was late! I made sure to let anesthesia know about what a hard time I’d had waking up from the previous surgery and they assured me they’d adjust, and this time would be different.
True to their word, I woke up in the surgical suite after the operation and stayed awake through post op and into my ICU room. As I came to, I realized that somehow, while I was not conscious, I managed to bite my tongue really hard. This did end up bothering me for a few days!
Music is my heart language, and it is how I experience and process my life. This season was no exception, and I had curated a Spotify playlist that helped me so much. When I woke up from anesthesia after the surgery, one of the songs from this playlist was on repeat in my brain. The chorus was like God singing His love over me:
"I got plans for you
I got a future and a hope for you
Just lean back in My arms
Just lean back in My arms
And I know where you've been
I see where you are and where you're going
Lean back in My arms
Just lеan back in My arms, yeah"
Ironically the ICU room I was brought to was the same room I had been in before but not on the window side. This time I was in a small, curtained-off partition about eight feet wide by eight feet long. There was barely enough room for the bed let alone the ever-present medical staff and my poor husband was permanently condensed. My Mom had come to sit with my husband during the surgery, I think the kids were still traumatized my their last experience and decided to wait until I was awake. My husband and Mom came in to see me soon after I was in the room and, assured that I was much better this time, Mom soon went home and my husband settled in. One of the nurses’ aides, Hazel, was my angel and, even though she was not assigned to me, answered my call for help and got my husband set up with a chair that converted to a bed! She even got him blankets and pillows. No more sleeping on a commode for him!
The primary difference in recovering from this surgery over the last (apart from waking up properly) was that this time they had placed an extra ventricular drain (EVD). This meant that they had drilled a few holes in my skull and run some tubing down to the lateral ventricles in the center of my brain and then out the top of my head. This was what they call a gravity drain which meant that there was a pole next to me with a bag to collect fluid that had to be positioned EXACTLY the same height as my head. They even used a laser pointed at my ear to get it to the right spot. This meant that any time I changed positions, even just shifting in bed, the nurse had to come in and re-align the bag. And we’re talking 24-7 here. There was no taking the drain in and out, it was in for the duration of my stay. So why had they put such an inconvenient thing in? One word, hydrocephalus. That means I had too much fluid in the ventricles of my brain which put pressure on the rest of it, likely because my body was producing too much, not because of a blockage since they’d already resected the part of my tumor that could have blocked the 4th ventricle.
Yes, let's give that tumor a few words. The purpose of the first surgery was to remove as much of it as possible, but it turned out that some of it was embedded in my cerebellum. If they were to try to remove that part, it could seriously affect my quality of life. This could include damaging my ability to walk, talk, even swallow or breathe. The surgeon felt like it was much wiser to leave part of the tumor in my brain then take it out and ruin what would be left of my life. He was able to remove about 75% of it. Because of its location, between my cerebellum and my brain stem, I am not a candidate for chemotherapy or radiation. I can't say I'm sad about that, the idea of doing either of those treatments is pretty scary, but I'm not a huge fan of knowing that I have a brain tumor for the rest of my life either. They sent the part they took out to pathology and found out that it is a pilocytic astrocytoma. This is a benign, slow-growing tumor, fairly common in children but, of course, extremely rare in adults. For the rest of my life, or at least the foreseeable future, I will be going into the hospital once a year, or more frequently if I have symptoms, to get an MRI done to check the size of this tumor and see if it has grown significantly and/or it is blocking the 4th ventricle. If either of these becomes the case I will have to go in for another surgery to resect more of the tumor.
Meanwhile, back in the ICU, I was managing to stay conscious. Part of the post-surgery process is popping down to get CT scans, of course they wheeled me in my bed to do so. I wasn't popping anywhere at the time. I didn't experience the same difficulty waking up from anesthesia as I had after the first brain surgery, but that's not to say I didn't have any post-surgery difficulties. They had imposed a great deal of trauma on my head. They had completely reopened my original incision and first swabbed then debrided it to clean out infection. They also had to patch the CSF leak. Finally, they drilled multiple holes in the top of my skull in order to snake the EVD catheter into my brain, and then they used a whole lot of staples to hold it in place, staples that were of course embedded in my skull. What I'm getting at is it makes sense that I ended up in a fair amount of pain the night after my surgery. That's not even a legitimate statement. I was in a ridiculous amount of pain, more pain than i had ever been in in my entire life. I have long hated the pain scales they have you used at the doctors. It's so hard to give somebody a number that represents how you're feeling. Who's to say that my five matches anyone else's 5? So, a while back, I put together my own pain scale (not the one pictured above) that had experiential points to it. For example, I said a 6 represented the pain of stepping on a sprained ankle and an 8 represented the pain of labor in childbirth. On this scale, I theoretically had a level 10 represent so much pain that I couldn't handle it and I would pass out. When I created this scale, I never expected to actually experience that amount of pain. I'm sad to share that I was wrong. That night, my pain started at a four and then moved quickly to a six. It came in waves, very much like contractions in childbirth. As time went on the pain increased to a level 8, and then the contractions of pain grew closer and closer together until the pain was actually constant. I had been managing the pain with breathing techniques, but at a certain point I couldn't breathe through it anymore. The pain increased beyond a level 8, and I found my whole body beginning to shake. The next thing I knew, I had passed out. I guess that's a level 10! When I woke up, the pain was a little better and it continued to get a little better and a little better and a little better overtime until it was finally bearable. I truly hope I never have to experience anything like that again. Part of the problem was that they kept giving me oxy hoping it would help. I'm not sure whose bright idea it was to make this policy, but every nurse and doctor I encountered for months kept trying to throw oxy at me. From the very first time I took it, it didn't do a single thing for me. It didn't help at all! But that didn't stop them from continuing to give it to me! Later in this hospital stay we were able to find a medication that did actually help me with pain. Hopefully, if I encounter a terrible situation like this again, I will have a better tool in my tool belt.
The second night after surgery was better, but not good. Not long after my husband had been able to drift off to sleep, I was reminded of the importance of having food in my stomach when I take medicine. You would think that nurses would take this into account. I found, though, that while I was in the hospital it was entirely my responsibility to make sure that I had food on board for the medicines that necessitated it. This early after surgery, I just didn't have the mental awareness to keep track of such things. What this meant was my nurses got to do a complete clothing and linen change for my bed. My husband felt pretty bad because evidently I had tried to wake him up to have him get me a green bag, but he is not an easy person to wake. This was the beginning of 12 weeks of nausea that went along with the IV antibiotics I was on. In the beginning it was especially bad because we had not yet learned how to manage it. Before long, I encountered nurses who were skilled at managing nausea because they would rather do that then change your bedclothes!
Here's the thing: Yes, I experienced the worst pain of my life, but I would definitely say that my second surgery post op went much better than my first. I hate what my family had to go through that first time. Just being conscious makes such a big difference!
The Whole Story:
Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter
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