- A scar running from below my sternum down to my pubic bone, which makes it hard to stand upright but strangely satisfying to lay flat (slowly).
- Multiple holes on my left arm from three IV leads: two veins and an arterial. The arterial is numb and tingly and feels like it’s about 3″ shorter than the rest of my arm. The line they pulled out of there was the diameter of a garden hose, I swear.
- Multiple scars on my right arm from two IV leads, both veins.
- A hole in my stomach to the right of where my bellybutton was from the drain. They just pulled out the hose and taped it over with some gauze. HOW ARE MY INTESTINES NOT OOZING OUT OF THIS?
- A crick at the base of my skull from the 1″ thick hospital pillow. I should have asked for six of them.
- A sore spot at the base of my spine from the hospital bed.
- A finicky right knee, still recovering from the pre-surgery radiation. It’s still numb and if it hasn’t been stretched every half-hour or so it locks itself up.
- Sparse, eleventh-grade fuzz breaking out in my moustache/goatee area. It’s coming in lighter and more random than puberty but the effect is the same.
- General aches and pains from being laid up in bed for a week. Overall I feel like I did 3 rounds with an MMA fighter.
I’m out of the hospital and home. This morning I woke up in my usual achy pool of sweat and ordered some breakfast from the menu; Jen and I got Skype set up because FaceTime just wasn’t working, and I watched Finn open her gifts. Thanks go once again to Aunt Renie, who went above and beyond with her efforts. During the telecast, I had to run for a morning constitutional, which was the best present I could have unwrapped.
After we jumped off to get the day started, I took the first full shower I’d had since the Sunday before the surgery. And that shit felt good. It was a long hot Hollywood shower, and I scrubbed every part of my yuck body three times at least. Then I got out in two new gowns and did 10 laps around the ward. Things were definitely quieter on the floor, and it turned out they’d discharged a bunch of people right before and during the holiday. I told my nurses about my, uh, present, and they began making calls in the background.
The ladies showed up around noon and we sat quietly, reading more of The Order of the Phoenix and waiting for my lunch to arrive. I must have been really hungry on Saturday evening, because the same meal for lunch this afternoon didn’t taste nearly as well as it did the first time. Around three o’clock we got excellent news from my nurse, who told me they’d released me. It took about two hours of paperwork and some prescription pick-ups before we were able to go, but I walked myself into that hospital and I walked myself back out a week later.
I’m laying in my own bed, in my own PJs, under my own sheets. Nobody is barging in here in two hours to take my vitals, prick my finger for blood sugar, or give me a pill. The bed is flat and firm. The pillow is thick and firm. If I don’t get a decent night’s sleep tonight, there’s definitely something wrong with me.
I’ve focused a lot on my bottom system here because that’s the baseline for the doctors knowing you’ve healed up. They make sure you’re walking and pooping and BOOM you’re out the door. My journey has been slow because of all the movement and trauma to my digestive system, and it’s taken a lot of time to get things back on track. Yesterday was a big milestone for me, because not only did they take me off IV fluids, but they let me move up from a Clear Liquid diet (basically your choice of three flavorless broths and/or Jell-O) to Full Liquid diet (several choices of soup, yogurt, pudding, ice cream and milk). I had beef broth for lunch and it was OK but pretty bland after the first two minutes. By dinnertime I almost cried when I had the Cream of Wheat and cream of potato soup, because the former was so shitty and the latter tasted so good. About an hour later, my intestines started ramping up and things got painful, so I ran to the bathroom and exploded. This happened several more times, and while it was unpleasant in the moment, it was a huge relief to know things are getting back up to speed.
The girls came to visit me at about 11 and sat with me through the day, which was lovely. I caught up with them while they busted out some crafts, ate my lunch and then promptly passed out on them for an hour and a half. Having them here was the best thing I could have asked for because I’d been back and forth with the nurses and doctors over the amount of progress I was making and had gotten really discouraged on Friday. We played some card games, talked and laughed, and capped things off with another chapter of Harry Potter while I ate my glorious dinner.
It was immediately quieter and lonely when they’d left, and I settled in for another difficult night of sleep. It’s hard to regulate temperature in these rooms, probably because the slow drip of pain meds I’m on comes out of me like a whisky drunk overnight: I sweat everything out from my back and freeze from my chest. No amount of AC manipulation, blanket arrangement or positioning will help, so I have to wait for exhaustion to take over after midnight and hope the 4-hour tech doesn’t flip ALL THE FUCKING LIGHTS ON when they come in to check my vitals. Hopefully the pills they put me on won’t have the same side effects.
Spending Christmas Eve in here is going to suck, no doubt. But hopefully I can get home sometime in the next two days. It can’t come soon enough.
Yesterday I got behind on my pain meds and found out just how much they are helping. My epidural bag went empty so my nurse got all of the other stuff sorted out and then went to put an order in for a replacement. I waited patiently for an hour, watching SPECTRE, and fell asleep for another hour or so. When I woke up the incision was throbbing and the hole in my side where the drain comes out was angry and tender to the touch. I called the nurse’s station and they hurried over with the new bag and a shot of Dilaudid to get me back on top of things. I’ve been very pleasant with all of my nurses, even the brusque ones (Dugan’s rule: you are ALWAYS pleasant with cops, teachers, waitresses, and nurses–anyone who has the power to throw you in jail, yank on your pee-pee, or spit in your food) but I admit to being frosty with her after that.
At about 7:30, when the night nurse and I were just getting up to speed, the cramping in my guts produced one mighty bed-rumbling fart and we both celebrated with a high-five. This means I move to what they call a clear liquid diet, which is beef broth and jell-o mostly, and as exciting as tax returns. I’ve been living on sugar-enhanced saline since the surgery, and while my blood sugar is right where it should be, there’s a gaping maw in my stomach where a cheeseburger needs to be. It also means the IV drip in my hand comes out, which leaves just one connection to the pole: the epidural drip.
Still no word on when I’m getting out of here.
I’ve got a neighbor on my floor who sounds like he’s in bad shape. Every day, at least twice a day, he’ll suddenly start moaning and calling out Help, and if someone isn’t there in under a minute, things start beeping, which means he’s pulled some wires out and is thrashing around on his bed. I called the nurse for him yesterday when I heard him ramping up and they got him calmed down before the alarms started. I think he may be doped to the gills and delirious, but I hope he comes out of it soon.
Last night was a little milestone that took a lot out of me (literally): the catheter is gone. They decided to schedule the removal for midnight, for some unknown reason. My overnight nurse Chesa has been my favorite by far, so I was relieved that it would happen on her watch. We made a plan so that I’d get a shot of dilaudid at 11 and then we’d take care of business at 12. At 11:30 though, my moaning neighbor started up again, shit started beeping, and they scrambled all the available nurses to deal with him. At 12:45 two nurses I’ve never met came in and I immediately understood what was happening: the older nurse was training the younger, who had never done this before. OH HELL NO. I let them prepare all their stuff and get ready, and after the fourth time the young nurse banged my junk around, I looked at the older nurse and said through gritted teeth, “Excuse me, but I’d prefer if you handled this from here on out.”
And, frankly, once she took over, it was pretty smooth sailing.
This leaves a couple of other tubes I still have to deal with: there’s a vacuum attached over the incision on my stomach, which is helping gather all of the remaining fluid in my stomach cavity and sending it to another tube nearby which is attached to a squeeze bottle. This is where that fluid collects every day. They were talking about taking the vacuum off today, which sounded like a Big Deal. Turns out, it was not. A nice man named Peter came and within five minutes had the plastic wrap and the carpeting peeled off completely. The incision looks lumpy and misshapen, but there are no visible stitches–those are all inside. Peter put some glue on the outside, bandaged it up, and cheerfully told me we were done.
The pain team came in and talked about removing the epidural soon, once I’m able to take more fluid by mouth. I have no idea what to expect there, but what I’ve been able to feel is a piece of plastic stuck to the small of my back. And I’m up and walking to try and jumpstart my GI tract so that I can begin taking colored liquids and move to solid food. Nothing has happened yet, and I’m getting impatient.
Overnights here are the worst because there is no actual rest; someone is in the room every two hours to take vitals, clean up, or check blood sugar. And I can only sleep on my back because of the incision. I just want to get home and get into my own bed. I miss my people and my house and my food.
Overnights seem to be the hardest part of this gig so far. I’m on about five different medications which are all competing with each other on how to make me feel the most stupid. As a result, they are messing with my sleep patterns and I’m up and down the whole night. They’ve got saline going in my arm and a slow drip of some kind of pain med through the epidural. When I hit the button for that stuff it feels like someone is spritzing ice water down my back and then things get groovy. But the side effect of that one is how it messes with my vision; my eyes jump around a lot and I can’t focus up close on anything. Last night I asked for something to help me sleep so they gave me some benadryl and that put me down for about two hours before I woke up again.
I want them to show me how to get cleaned up because I’m getting pretty ripe. I think they’ve been waiting until all of the major tubes come out (the one I haven’t talked about is the drain in my midsection, which has been collecting less and less but will not feel good coming out).
Yesterday I did two laps around the ward at 1 with Jen and another two at about 6 after she’d left. I wasn’t worried about passing out like I was on the first day and that was encouraging. They want me up and moving so that my GI tract will start functioning again; apparently when I start passing gas my intestines are waking back up. Today I did three laps in one shot, and I’m going to get up and do another three in a few minutes. I’ve never wished for farts before, but I am now, because I’m getting hungry.
I’m laying on a hospital bed on the fourth floor of the Weinberg Center under several blankets. My left hand is a mass of tubes and tape (the arterial line in my right hand came out last night) and I’ve got more tubes in other places plus an epidural, which was the first line they used to get the ball rolling, and the last thing I remember before waking up in the ICU.
I made it through with fewer complications than they were expecting. The mass wasn’t sticking to or growing from any major organs. It was self-contained and freely floating about my abdomen which meant that it was a lot easier to remove. They did radiation treatment while I was open, and removed my gall bladder for good measure. I’m thanking my lucky stars because all of that meant they didn’t need to set up an ostomy of any kind.
Now there’s a large scar running up my stomach, sealed with what looks like black indoor-outdoor carpeting. At first I didn’t notice it all that much, because I was still coming off anesthesia. Later in the day I went from the epidural to Tylenol to Dilaudid as the pain got more severe; there was a point when my breathing was so shallow as to be useless. The Dilaudid helped back off that pain and I was able to breathe and speak somewhat normally. I was also able to get up and walk a loop of the ICU, which was one of the boxes I had to check to be admitted to the main floor up here. The other was getting the gastric suction tube removed, and I hope I never have to do that again. Think of the sharp pain you get at the pool when water gets up your nose but this time it doesn’t go away, and then add the sensation of plastic scraping all the way up your windpipe from somewhere down by your legs.
Overall, it could have been much, much worse. Jen has been with me the whole time and told me that everyone has been checking in on the situation and sending love. I like to think that love counted for this outcome.
P.S. I’ve got pictures of the baby. Who wants to see? Use the comment box below with a viable email address.
Jen and I spent all day Thursday at Johns Hopkins, bouncing from one appointment to another. First up was labwork at 9AM to see where my counts are. A giant, gentle nurse named Brandon accessed my port, took blood, and left the needle in because, surprise! a CT scan with contrast showed up on the schedule that morning. Next up was a consult with my surgeon, who is a lovely, funny man with a firm handshake. We got the briefing on how surgery would go, what to expect before during and after, and had a bunch of questions answered. Next we met with an ostomy specialist, who showed me a small bag that will most likely be my companion for a couple of months while I heal up from the procedure. While we were talking with that nurse, one of the attending surgeons popped his head back in and said they’d looked again at the 2014 CT scan and estimate that Lil’ Lumpy was about 10cm large at that point.
From there we went to another building to have the new CT scan done. I’m kind of a pro at CT scans these days, and this one was by far the fastest and most efficient one I’ve ever done. They had me in and out in about 20 minutes, and I got to do it in a donut that was decorated with all kinds of coral and tropical fish. Apparently the machine is shared with the pediatric cancer wing, so it’s the most cheerful CT machine in the hospital. I support the idea of decorating giant sterile beige machines with clownfish and eels. It makes the hot peeing-your-pants sensation of IV contrast a little more palatable.
We had 45 minutes for lunch before the next appointment, so we hustled to the fancy cafe and downed some food. Then we walked back over to talk with a doctor for the pre-op meeting, where she reviewed my whole medical history, talked about the medications I’ve been on, and reviewed the functional details of the surgery.
Finally, we talked with my chemo doctor, who reviewed my progress and quizzed me on how I’ve been through the second round. I should plug the entire staff of Johns Hopkins here because to a person they’ve all been helpful, patient, understanding and very generous with their time and knowledge. I picked the right team of people.
By the time we were done it was 4:30 and my brain was mush, so we hopped in the car and headed home. Parked out in front of the house was Mario with his brother, who came in and hung three sheets of drywall, adjusted the closet opening, and generally made some progress. Friends, three sheets of drywall can make a HUGE difference in your daily outlook.
Renie tipped me to this site a couple of years ago when I first started managing other people: Ask a Manager. There are always lots of good stories here, and the best replies are, as always, buried in the comments. I don’t know how I missed this gem from 2016: My manager shows up while I’m having chemotherapy to talk about work. I think that I would probably just kill that person with my bare hands.