Let’s start with hospital stays. It is like staying in the world’s worst hotel. One where you are woken up every four hours so they can take your vitals because apparently rest is not a part of the recovery process, despite what they say. One where the food sucks, and you can’t leave your room unless they get to poke you with something. My stay at the Wilmont Cancer Center was infinitely better than my stay at Pitt for many, many reasons. Chiefly, it was much shorter, and I was allowed to leave my room to walk around the floor if I wanted (there are good reasons for both, but it doesn’t make the stay at Pitt any better). My stay in Wilmont was mostly about getting the infection taken care of and would ultimately be the beginning of my chemotherapy treatment. But first that pesky infection needed to go away. On top of medicines, I had a drain put in. For the uninformed, this is basically a squishy ball attached to a tube that goes inside your body and lets whatever is there drain out. In the week I was in the hospital, I would have to be taken down to have the tube adjusted or a bigger tube put in to allow it to drain better. These were relatively quick procedures (and the least involved of any of the multiple times I was opened up). After the initial drain was put in, I think there were two or three revisions made when it stopped draining. This was my first of three drains-I would get two of them after my major surgery in October. The drain was put in my lower back where the infection was, and to flash forward to today, I still have a hole back there because a) when I got my port installed (I know that’s not the right term, but it just fits), that hole was made larger (can’t remember why, but I am sure my dad will remind me) and then b) when I had the big surgery in October, some cancer in that tract needed to be cut out. In what I can only assume was the universe laughing at me, the drain site had healed over just a week or so before it would be reopened.
I look forward to the day when I don't need a dressing on my lower back to keep interior fluids inside. Over the past year, I've become very good at changing a dressing in a mirror.
Once the infection was under control, it was time to start chemo. To get my first dose of poison, I needed to have a PICC line put in; basically, it was a better way to have an IV drug than putting it in a vein in your arm. I don’t know the details, but I do remember that it took about a half hour or so to get put in, and the chemo followed soon after. I do not have much to say about this initial round, mostly because it was surrounded by so much else. The side effects were not noticeable to me because everything about a hospital stay sucks. The chemo was just another sucky thing on top of a whole big pile of shitty things. After this initial round, I would get the PICC line removed and have my port put in for the rest of my treatments.
I will say this about my first hospital stay: the room was nice (for a hospital room). I had a nice big window that gave me a view of the apartment building next door, but it was still a pretty big window. I was able to get out of bed, and while I couldn’t leave the floor while hooked up to an IV, which I was for most of the time, I could do laps. There was a space on the floor with wrap-around windows and some therapy equipment. It looked out onto Crittenden Boulevard. The view wasn’t much better than the one from my room, but when I went for my daily lap, I would end up in that space for a bit and people-watch; there wasn’t much else to do besides take laps and watch stuff in between doctor visits and procedures. I did my best to keep up with writing and am proud that through all of this I only missed one (maybe two) weeks. I wish I'd had the energy to read more during my two hospital stays, but I was all about passive participation, and reading took effort I just didn’t have.
Then in October, I had my big surgery and was in Pittsburgh for over two weeks (again, it was a bit of a blur because there was even more going on). I started in the Critical Care Unit just after my surgery and was there for about a week. The furthest I was allowed to move was from my bed to the chair, and I needed to get help to do that. As someone who hates to ask others for help, those days in the hospital were torture. I know I could have done more, but the hospital was covering their ass (as is their right, but doesn’t mean I have to like how I felt) because I had my femoral nerve removed and the right leg was iffy. I use these feelings of helplessness to remind myself how far I have come in the last year. I have gone from needing help to move less than three feet to walking about a mile to and from work every day, walking my dog, getting groceries, and taking a stroll because I can. I still cannot take stairs the normal way, and my pace is much slower (I am averaging a 20ish-minute mile), but I have come such a long way. I would leave my last hospital stay at the U of R with crutches and a rollator walker, but I never really used them for much. I do have a cane, but I only use that for safety when walking outside-city streets are not known for their levelness. When I started walking Rory, the cane was folded up, but I thought it looked like something I would hit him with, so I walk with it unfolded so it clearly looks like a walking cane. But I digress…
As many of you may know, if you are on medications, you might be told to skip a dose before surgery. One of the meds I had to skip is the one I take for ADHD. That’s not a big deal, as I have forgotten to take my meds in the morning and it doesn’t have a huge effect on my day. I feel a little more wound up, but I can manage. When I am off those meds for a while, it becomes a problem. I was not put back on those meds the day after my surgery, and my brain was all sorts of messed up in the following days. The whole point of the pill is to mess with your brain chemistry, and when that balance starts to shift, the side effects start to show. There is a reason you are not supposed to stop meds like these cold turkey. I would have chalked the brain fog up to the surgery and all that, but I had felt the side effects of going without meds before. When I was between jobs, I wouldn’t take my ADHD meds every day. I wasn’t insured, and those pills are very expensive. I would go two or three days between doses, and I can remember distinctly how that felt. I was in my apartment on College Street and had recently taken over the loft just off the living room. I was going up the stairs to my room when I started to feel off- definitely don’t recommend having that happen on stairs; it can be very scary. The best way to describe it is a sense of detachment where you can’t focus on anything. Two days after my surgery, that is exactly what I was feeling. My brain was a mess, and I was having a lot of trouble forming a coherent thought. I remember looking at the patient information chart on the wall, and that feeling from a few years before hit me. Thankfully, I was put back on those meds pretty quickly, and things came back into focus.
I eventually got moved to a new room where I spent most of my stay at Pitt. This was where I really started my PT. I did some work in the other room, but this was where I was actually doing stuff. At first, we were just in the room moving around. During one of the first sessions, I was near the door, and someone tried to come in. Not being used how my leg now worked, I used it to try to move out of the way, and it crumpled. I ended up on the floor, and everyone lost their shit. For the rest of my PT sessions at Pitt, I was in a leg immobilizer. I still think this was an overreaction on their part (I never used it when I was in rehab in Rochester). I had a walker, and that really was all I needed. Again, I get they were covering their ass so that I didn’t end up hurting myself or making anything worse, but I am convinced that as long as I had that walker, I would have been fine.
This issue wasn’t that I was falling all the time. It was that I was not used to my leg yet. I didn’t know then that small movements were more dangerous than big ones. I know that sounds weird; the in-home PT guy I had thought it was. Here is the thing: every fall I have had post-surgery was when I was doing small movements: pivoting away from the hospital room door, moving from the wheelchair to the car when I was discharged from Pitt, turning from the stairs in the front hallway in my parents' house, walking around the ottoman at my parents' house, taking a turn around the counter at my parents' house, turning to get a tissue out of my bag on my walk to work, and turning to bring Rory’s food to his bowl one morning this summer. Side note about that last fall. He was sitting on his chair in the living room when I fell, making a loud thud and food flying everywhere. And do you want to guess his reaction? Nothing. The little butthead stayed in his chair looking out the window. “Man’s best friend,” my ass.
There are three exceptions to the small movement falls. When I was getting PT at the U of R, I worked on stairs and fell twice, and once at home. Again, this was because I was still thinking like someone with two good legs. Have I fallen on the stairs since my mindset has changed? Nope. Even most of my close calls (minus dog-related ones) have been those small movements. There is a difference between a physical failure of the leg and a mental lapse on my part. That is why I was so frustrated with the kid gloves I was treated with. I needed time to rewire my brain and learn what my leg can and cannot handle.
All this did was push that off to later when I was released from the hospital. It also raised some very real concerns for me. You people haven’t let me walk by myself in almost a month, and now you are just sending me home? In education, there is a thing called scaffolding. In a lesson, it takes the form of I Do, We Do, You Do. The teacher does one to show an example, the whole class does some together so that the student can practice with the help of others, and then they do one on their own. That is what I was looking for in my rehab. We will help you walk for a bit, and in the last day or so, we will walk with you while you use the walker. In the month I was recovering in the hospital(s), someone was always right next to me when I moved. When back at the U of R, they tied a rope around my waist and held onto it while I walked. I get that it is complicated, and they were just following their protocols. Allowing me to fail and learn could have ended up hurting me.
If I had to sum up my hospital stays, I'd say they were frustrating. The thing about those of us with ADHD is that we thrive on structure and routine. I get up, go to work, teach my groups, go home, make dinner, and go to bed. Wake up and repeat. Uncertainty breeds anxiety, which makes it harder to focus and be productive. And I need to be productive. When I was in the hospital, all that went away. The only scheduled things were the ones I hated: procedures, blood draws, and vitals checks. I had so much “free time” that filling my days was a nightmare. Part of why my time in the hospital is a blur is that not having anything to do makes you lose your sense of time. I watched a lot of TV, played a lot of Pokémon on my Switch, wrote some stuff, and spent time on my computer. None of it was particularly productive, and even the stuff I wrote and posted didn’t fill the productivity void.
When I got back to the U of R for inpatient PT and OT, I at least had a few hours of therapy sessions to break up the day. They even had daily evening activities you could attend if you wanted to. It was a nice change and a break from the monotony of my previous two-plus weeks. Sure, the room was a hell of a lot smaller-there wasn’t even a chair I could move to, so I spent most of the day in bed.
