Struggles and some good news

Now I’m trying to mend my ways
I had enough of pain and bad will
Good enough for you someday
Till then, it’s a losing battle…

It’s always been in my nature to be the beast
Blame the maker but stay with me

Josh Ritter, Losing Battles

Hello everyone! I am glad to be back and writing again. I am pacing myself very carefully considering my strict screen / reading time limitations. I’ve been very eager to write and update but haven’t been able to due to those restrictions / limitations (post surgery was limited to five minutes a day of any screen time).

The second time has been much more of a struggle. The hospital stay was filled with lots of intense situations. My surgery went fine but protocol requires one night in the ICU. While I was there, there was no ICU room available so the hospital converted the post-op room into an overflow ICU. I was stationed there for one night, checked in on at every hour to make sure I was stable. The things that I heard and were happening in that overflow ICU. It was brutal. I had a perimeter of curtain drew around me so I couldn’t see anything (and really didn’t want to) but I could hear everything. Lots of moaning and suffering. The hospital staff was doing their best but you knew there were stretched too thin and worn down. Nearly everyone I talked to was on a temporary “floating assignment” and away from where they normally work. I overhead talk of how many nurses were calling in sick because they themselves had tested positive for COVID. Still, the nurses were there, holding the line, doing their jobs. It felt like a military situation in someways. I thought a lot about institutions (like hospitals and healthcare) and mission (this was more than just a job to these men and women– there had to be some higher calling and strong purpose to what they do everyday for their job). Even though the results were not A+, these men and women were holding it together by their own sheer grit. Still, being in the hospital, espeically the overflow ICU felt like being in a bomb waiting to explode and I wanted to get out of there (I can still hear the sounds from that night). I wore my facemask nearly all the time. One time Paige found me with my facemask and eyemask on (I brought the eyemask so I could sleep, the lights stay on in the overflow ICU 24 hours) I must’ve looked like a cross between Darth Vader and Bane, trying to sleep. I was very nervous about contracting COVID the entire time. At one point Paige had to take my facemask away so I wouldn’t try to sleep with it on.

One of the good things was how well I was doing post surgery. As opposed to the first cranitomy (or cranny as my neurosurgeon starting referring to them), I remember it taking a while to get “with it” and feel lucid. This time I was lucid and with it from the moment of waking up (still in the operating room!). I remember looking at my hands and pumping each hand to make sure I had motion on each side of my body…I did! Paige got to come back and see me and she was blown away on how well I looked and well I was communicating. My neurosurgeon talked with me and I got to hear how well the surgery went.
You don’t know this, but there was a strong chance they would find cancer when they opened me up again. At our consult at Wake Forest, the surgeon there said they find it, “a lot”, if they find it, they remove it. The also were installing “chemo wafers” on my brain in case there was ever a reoccurance. These “chemo wafers” are supposed to be especially good at treating melanoma. So when they operated on me, there would be taking a sample of my brain tissue, freezing it for 20 minutes, and running a short-term pathology to see if it was malignant or not. Any other samples obtained would be send to long term pathology which takes two weeks but would determine if the sample was cancer tumor or not (this was how I was first diagnosed with metastatic melanoma). Well, when I came to the first question I had for my neurosurgeon was “What was the path?” Response: “Necrosis. Dead brain tissue. There’s another sample sent to long-term path.” I knew what that meant– I wouldn’t know long term path for a couple of weeks. But in the short term, they hadn’t found cancer, only dead brain tissue consistent with necrosis. This was very good news!

There’s always one nurse who seems to be looking out for me. This time is was a guy named Trey. I heard him gathering notes from the ICU nurse when his shift started. He was dealing with a lot of other patient situations which I overheard too (some dark stuff). But he introduced himself to me and went out of his way to make sure I was taken care of, which considering the situation everyone in that hospital was in, was very unique. I finally got food but they sent me a regular breakfast (lots of dairy and meat) even though I had put in for a veggie meal. Trey called and made sure I got food I could eat and then arranged someone to take notes for the rest of my meals for my hospital stay. He also started working on a private room for me on a the neuro floor. Paige had joined me since visitors’ hours started (10am-6pm) and around 11am after my neurosurgeon done his rounds for the day and seen us, he had secured a room for me on the 7th floor, . The private room was very good to settle into. I was out of the chaos that was the overflow ICU. From there it was the routine of nurses checking vitals every 4 hours. There was still a frantic energy that could be felt. Talking to the nurses you could tell they would tell you they were “floaters” and not on their usual floor or position. Many had stories about something crazy that had happened the day before. The level of care was entirely different than the first cranny. And I understand why– this was major brain surgery during a pandemic. It was just past Christmas and people were stretched. Everyone was understandably distracted. I facetimed my Dad and half-brother Wednesday– they had driven up from Florida to be near me, understanding that they probably would not get to see me, especially at the hospital since only one visitor is allowed per day and that would be Paige. Everyone remarked how good I looked and how well I was doing. My ego was being fed a lot of fuel. For this cranny I was very conscious of my wound and how it was feeling. My head felt fine and clear but I did feel pain this time from the incision and the wound. This time around I accepted the pain meds offered to me– I also needed help sleeping in the middle of all of the chaos so I took whatever help I could get.

The hospital actually did allow overnight guests. There’s a whole process that could change daily but first, no overnight guests in the ICU (which the overflow ICU would make that impossible anyhow, Paige said it was hard to leave me there). But a guest could stay in a private room as long as they left as a visitor and checked back in as an overnight guest. I was determined to be discharged on Friday January 1st. I kept repeating that to whoever would listen. Physical therapy came by and asked me to walk around. I would walk and they would talked to me and ask questions. I’m not sure if that was intentional or not but walking and talking a lot after a brain surgery is very taxing. But I told them if it got me out on Friday I’d keep talking, or did they want me to do some push-ups? The therapist said she’d write a good report for me. The typical stay after a cranny is three to five days. I really really wanted the three. After talking with Paige, we thought it made the most sense for her to stay with me Thursday night. That way, she’d be there when my neurosurgeon did his around early in the morning and we could make a case for my discharge and then hopefully leave. But she’d still be there all during visitor hours (10am-6pm) on Thursday.
Thursday morning came and dragged by. Usually my neurosurgeon does very early rounds– like 7:30am or so. I literally watched the clock (only thing I could watch) as time dragged by with no sign. I remembered he was also an on-call neurosurgeon for another hospital so it was possible he was in emergency brain surgery somewhere else. I asked nurses but no one had seen him yet. Besides nurses for vitals and food drop-off, I didn’t have any interruptions that morning. Paige joined me and I tried to drift in and out of sleep, always anticipating that my surgeon would be walking through the door for rounds any second. Sometime around 2pm, we could hear a lot of chatter right outside my door. He knocked and came in, a bit flustered. He had just got the latest COVID numbers for the hospital. He knew about our COVID concerns and how serious we were taking this. He had lost a grandmother to COVID earlier in the year so he was very respectful of our desire to get out and get distance fast. He looked me over, commented how well I was doing, talked about how good the CAT scan and other diagnostic tests looked. Then there was a short silence. “Am I still on track to head home Friday?”
“Or I can discharge you today. It’s up to you. If you want another night to make sure you’re okay, you are more than welcome to stay, but if you want to go home, then I can discharge you this afternoon.”
I looked at Paige– I could be home tonight! Sleeping in my own home, away from the COVID time bomb. I felt well enough to take him up on his offer.
After processing a lot of paperwork and going over all of the discharge steps (removing IVs, going over wound care and meds) I was being wheeled to Paige’s car to go home! 48 hours after major brain surgery I was on my way to my own home. Before I left he did catch me reading on the ipad and was not happy about that. He spoke about limitations and restrictions (which he is on the VERY conservative side of for healing reasons). Despite how well I was looking and doing, I still needed to take things slow, like the first time, maybe even slower. So it was with this ominous warning that we left and headed home to start my recovery post-hospital. I did get to see my Dad and half-brother for a meal when I got home. We were cold but we sat on our covered deck, and shared a meal. Fourteen days later we all are fine– we went into the belly of the beast and have come out unscathed, which is amazing.

The recovery post-hospital has been difficult. It’s not at all like the first time. To begin with, I have to stay on a high dose steroid regimen to control any possible brain swelling post-surgery. Even though the surgery got the dead brain tissue out, my brain is still in a state of post-surgery and needs to be stable before taking me off of any meds that help stabilize it. Unfortunately, one of those meds is high dose dexamethasone. Dex is much strong than prednisone (the cortisol steroid I was previously on) but carries many of the same negative side effects. They’ve all been on display since I came home– mood swings, out-of-control hunger cravings, insomnia, and high anxiety to name a few special ones. It’s been very tough on the whole family. When I got home I was basically living from pill to pill. On one hand, I respect this drug– it’s what gave me back control of my left side and stopped my brain swelling. On the other hand, I hate it– the side effects are terrible and I am not myself to say the least. When I got home I was taking 3 doses a day, which is incredibly high. I would have to take my last dose at 11pm, right before bed– which is like drinking caffeine right before bed (I also had to do this leading up to the surgery as well, so my body has a ample supply of this stuff and is quite used to getting it…it never adjusts to allow for sleep or decrease side effects, just builds up and makes withdraw more difficult when the time comes). Then I could go down to 2 times a day, which was better but no quite good since the afternoon dose would still interfere with sleep at night. Getting to one morning dose seemed to be the promised land. On the other hand, all my experiences with steroid tapers have taught me that there is a never an over-night promised land, even when lowering doses. I’ve had plenty of nights when I lowered a dose and expected to get good sleep only to find myself waking up earlier than on the higher dose (usually around 1 or 2am, not being able to go back to sleep). Something strange about my body, tapering, and withdraw. It always seems to take three or four days to settle into the new dose and actually see benefits. It’s hard to temper expectations.

Tempering expectations has been the battle of this recovery. Because I looked and felt so good after the surgery, I think it set up a level of unrealistic expectations for my recovery. Combine that with the steroids that give your ego a good mania boost and it’s a recipe for a lot of tears and hard feelings to work through, especially adjusting to the concept that you need to do nothing for a long while for your own recovery. We as a culture and society and not very good at doing nothing. It’s hard, not even reading a book. Fortunately, audio is a realm that has no limits. So I’ve been listening to a lot of audiobooks, podcasts, and music. At nights I’ve started listening to vinyl records, taking up the hobby of analog listening. It’s very calming to put on a record, sit in a comfy chair and just listen to something for an hour. It’s entirely different than listening to something digital on your phone.

This past Friday I got an alert on my phone. It was a test result. Most of the time I ignore these and let the doctor tell me about them at my next appointment but for some reason this time I clicked on the link.

SURGICAL PATHOLOGY
“RIGHT FRONT LESION”: CHANGES CONSISTENT WITH RADIATION NECROSIS. NEGATIVE FOR TUMOR.

This was huge news. The long term path had some back negative. I was still cancer free! It’s good for so many reasons. Even though most people don’t develop necrosis requiring another cranny like me, I feel like I’ve beat some odds by avoiding recurrence and having the same they found being only necrosis.

This was a good boost but the struggles continue. The amount of dexamethasone I’ve taken has really affected my body and I can tell there there’s been a significant amount of muscle wasting. I am on severe lifting restrictions / limitations anyway but I can definitely feel a weakness, especially in my legs. I want to work through it and get everything stronger again, but the time is not right yet. Like last time, for two weeks you can’t shave your face (due to the incision site on my right-side) and cannot get your head wet in the shower in order to protect the wound, which basically means you can’t wash your hair or cut it (in order to avoid hair follicles possibly getting into the wound and infecting it). So in addition to the dex side effects it’s been living with rats’ nest hair and two weeks of unshaven facial hair (which it not meant as a look for me in anyway). I’d been looking forward to my wound care check-up on Jan 13th. Previously (1st cranny) that 2 week check up had let me wash my hair and shave. They had removed all of my staples and gave me more freedoms– I was counting on that this time too.

The appointment did not go as I hoped. This time I had a combination of staples and stitches since the same incision site was used. Because it was a combination of tough scare tissue and then sensitive skin the wound is very different for this cranny. The follow-up appointment started well but upon looking at the wound they decided to remove only every-other staple. Which meant I would definitely have to come back to get the others removed which meant I would not be getting all of the freedoms I hoped for. Even as they removed the stitches I heard grimaces and cringes, the top of my head was not looking good. They kept blaming the steroids (for not allowing faster healing) and that it was a second incision on top of the first. It was painful. They had Paige take a picture and look. I have an open wound on top of my head and they’re very concerned about it. They really don’t want to risk infection (me neither!) so still no exposure to water, and no cutting of hair. I could shave but be careful not to get anything near the open part of the wound. They put a type of bandage on it that acts almost like a little hat. It doesn’t stick to anything, except some perimeter around it. It just prevents anything from landing on or touching the wound just under it. And I still have half of my staples holding together the incision for more sealing for another week. I have another follow-up this Wednesday to check the wound. I would like to believe I’ll get the staples out, that the wound would be sealing up nicely and I’ll get some more freedoms. But we’ve learned to drop the expectations from this process. So we shall see what this coming Wednesday brings.