I’m on my third month of decaf, and I have to say I don’t miss caffeine at all. I phased it out after suffering through withdrawal during the biopsy process, and by the time I made it to surgery I was clean. I’m not any sleepier in the morning, and I don’t feel like I need the jolt to keep awake or alert through the day. I still love coffee, and I will still drink decaf until they pry my mug from my cold dead hands. I do wish there was a greater selection of decaf blends available.
Meanwhile, my hair, as shown in the GIF below, has been coming in slowly but surely over the last month. I’ve shaved my goat three times since it got to the hair-in-my-mouth stage, but the hair on my scalp is taking its sweet, sweet time. I’m almost tempted to shave it off again for giggles, but I will admit it’s nice to see some color covering my pasty scalp again.
My stomach has been getting less and less tender. A month ago the beltline under my bellybutton was uncomfortable by the end of the day after constantly rubbing against the fabric of my pants, and I’d have to unsnap the button for some relief. This meant my fly was always sneaking downward, so I’d have to constantly be adjusting my package to make sure I wasn’t inadvertently becoming a target of the #metoo movement. Overall, an embarrassing and annoying situation. Now I can leave my pants snapped for the whole day and don’t notice any irritation unless I’ve been walking super-long distances.
I’ve done some light digging about the watch I found in the Mildew House last year, which was produced by a lesser-known Swiss company called Ollech & Wajs. They were formed in the 1950s and sold via direct mail, thus keeping their overhead and pricing low compared to their peers. In the 1960s they became popular with American military personnel, who replaced their lousy government-supplied watches with better quality timepieces, and the company enjoyed its best years during the Vietnam War. Mechanical timepieces fell out of favor in the ’70s, and O&W closed up shop in the 1980s with the advent of cheap Japanese watches. (O&W was one of the few Swiss makers who never offered a quartz movement). One of the partners opened the business back up in the 1990s and continues to produce watches under the brand name to this day. Interesting trivia: My watch cost $9.50 US in 1970, which equates to about $60 today.
This is a timelapse from November 6 to February 16, with a bunch of days missing here and there. I should have started this at the beginning of chemotherapy but actually started it about a week before Jen shaved my hair off. I would have kept shooting them (that was the plan) but the shutter on my D80 has decided to stick open. Maybe I can fix it in the next week, and if so I’ll start this back up again.
Thursday I stopped into our local Hopkins satellite location for a baseline CT scan, now that the baby is gone. This is going to be part of the new routine, a CT scan every 3 months to see if something else appears in my body, because it won’t show up in bloodwork. Overall I’m feeling much stronger this week. My arms still hurt but it’s receding slowly. I’m down to one Tylenol every eight hours, which is a relief. I haven’t used oxy in five days which is making my bottom system happy again. I don’t know how oxy junkies deal with never pooping; I’d be in the hospital with an impacted bowel the size of a subway car.
This week I tackled the issue of radiant floor heat for the new bathroom, which has been a giant question mark for months. The system I’ve been recommended is modular, incorporating a mat with molded depressions that goes down first. Then we snake a wire through those depressions in a specific pattern before laying thinset and putting tile down. The question has been how much mat, and most importantly how much wire do we need, because the wire has to be cut at the factory to fit the application–I can’t cut it once I’ve got it. I found distributors for the system, visited one on Tuesday, and was so underwhelmed by the “service” I got that I walked out of the store. The woman I talked to refused to help me figure out how much material I needed, because if she got it wrong, it would “come back on her, and there are no refunds.” Well, Fuck you very much. I found that the tile distributor we’ll be ordering our shower tile from also deals in this system, and returned there on Friday. The guy I talked to there took the time to sort through my diagram of the room, calculated the size, and set me up with the mat I need to get started. Once that’s installed, I’ll use a string to test-fit and see how much wire I need before ordering the rest of the system.
Having been stuck in the house for the past month, and while the region was trapped in record-breaking low temperatures, I got tired of always being cold and drafty. I’ve spent the last fifteen years trying anything and everything to make this house warmer, from insulation to new windows, and I don’t feel like any of it has helped. Wednesday afternoon I started paging through Angie’s List for energy auditors and found a local outfit who was offering an audit for $100 (with the other $300 being billed to BG&E). I called and set up an appointment for Friday morning. A nice man named Larry came out and walked through the house, looking over the boiler, piping, and layout, and then he hooked up a blower to the front door that provided negative air pressure. Then we walked each room with a FLIR camera and looked for leaks. Surprisingly, the blown insulation in our walls hasn’t settled too badly–just in a few locations. A big culprit for air leakage is the latex caulk I’ve used in a lot of places, which has shrunken in the cold, and allows for cold air to penetrate each room. Our ancient windows are actually holding air in pretty well, to my surprise. The preliminary findings say it’s going to be a lot of caulking with silicone, some weatherstripping around the doors, and closing up the lip of the aluminum siding/shingle where it meets the foundation outside. Larry will provide a large report with pictures and recommendations in about a week.
Saturday we jumped in the car after Finn’s soccer game and headed to the Renwick Gallery in DC to check out an exhibit of murder dioramas built by a woman in the 1940’s to further the budding science of forensics. The Nutshell Studies take actual murder cases and recreate the scene in 1′ x 1″ scale and meticulous detail. Jen saw an article about them in a magazine 20 years ago and was fascinated by the collection; last week she found an article about the exhibit and realized we needed to go see it immediately before it closed. Finn was fascinated by the displays and carefully read each of the descriptions before gazing at the dioramas, and I found myself slowly getting better at sussing out what the crime was and how it happened as we walked through the crowded exhibition.
On the front steps of the museum, we were greeted by the middle of the DC Women’s March, being down the street from the White House. After a few minutes of spectating, Jen suggested we join the march, so we walked down to the corner and slipped into the crowd. It was slow going, but the mood was upbeat and cheerful. Everyone in the crowd was smiling and laughing, and the weather was perfect for enjoying our constitutional rights. Pussy hats were everywhere, and it seemed like every hand-made sign was funnier than the last. Finley got caught up in the chants and was marching, fist raised, in a matter of minutes. We slowly made our way down the street to stand in front of the White House, where the crowd slowed, and Finley began a chant she’d heard earlier. A woman with a bullhorn walked over and handed her the mic, and she led the crowd for a minute, then stopped abruptly, shocked, I think, at her own agency. I was lucky enough to get the last two chants on video.
The White House was the endpoint for the march, so we gradually wound our way out of the crowd and headed back toward the garage. On our return home, we heated up some tea and made our way through three chapters of the Half-Blood Prince before bedtime. Overall, for a lightly planned day, we couldn’t have asked for a better one.
I got the official word today: No more chemotherapy.
The first thing to mention is that my arms haven’t gotten any better. I’m four days in on new blood thinners but apparently this is going to take a couple of weeks to resolve itself: the blood thinners help my body break the clot down naturally, but slowly, over time. Which sucks. I can’t be depending on oxycontin to go to sleep (there’s a recipe for disaster) so we doubled down on an alternative method this evening, which I’d much rather use anyway to dull the pain.
We drove in to Hopkins for a follow-up with my oncologist this afternoon, and after going through the updates, he dropped a bombshell on us: he’s not recommending any further rounds of chemotherapy based on how the tumor came out during the surgery. His thinking is that the radiation had the main effect on it, but the chemo didn’t do anything–no shrinkage or necrosis as far as he’d been told–so there’s no point in more chemo if it’s not going to help me in any way. He’s going to huddle with my surgeon to make sure they agree, and then let me know by the end of the week.
If I could avoid more chemotherapy, that would be wonderful. It’s a hateful, boring, lonely, and withering experience. Again, if I didn’t have Jen with me for the first two rounds I’d have gone mad. They’re going to put me on a schedule of CAT scans every three months to make sure nothing is growing, and then slowly taper the frequency back over the years. We asked a ton of questions and I left feeling kind of shell-shocked.
Last night I got to bed at a reasonable hour, and lulled myself to sleep with a podcast. I slept for a couple of hours and then woke up to use the bathroom. By the time I’d laid back down my arms were on fire all the way up and around my shoulders. I laid there for about 20 minutes waiting for everything to stop screaming and then gave up and took an Oxy, the first of the bottle they prescribed to me. After another 20 minutes things calmed down to the point where I could relax and I fell back asleep. Today I made an appointment with my GP to figure out what’s going on with my arms, because this shit has got to stop.
In the shower, I took advantage of a long hot soak and peeled the majority of glue on my incision off. Yeah, gross. It’s been on there since the 22nd, and when it went on it was clear. By today it was, well, not clear, and had begun to peel off in places. Some of it was harder to remove than the rest, but after I cleaned out my bellybutton (they detoured around that when they opened me up) the rest was pretty easy. The incision itself looks like a picture of the San Andreas Fault from about 5,000 feet: it’s jagged and uneven and there are parts that bulge out and parts that bulge in. Certain sections are numb and others are hypersensitive, not unlike my forearms. Looks like I’m going to have a real pretty souvenir of this experience.
Jen and I did two laps around the Columbia Mall today and that felt good. It was warm, we were moving, and we didn’t have to stop every 2 minutes to look at something (ahem, Finley).
Yesterday I did fuck-all at home. Sat on the couch, ate, watched Netflix.
This morning I took a shower, and before I got in I peeled off the last fresh gauze from the hospital over the drain hole in my stomach, still expecting to see purplish entrails come pouring out. Nope. Looks like it’s healing over. But, EEEEEWWWW.
While I was in the shower I shaved off the disgusting Fu-molester-Chu I’d been growing in the hospital. So much better. Today it flurried slightly in the morning, but the sun came out and we went out and get some lunch together. It felt good to walk around in the real air. Some friends came by to pick up Finn and take her to the aquarium for the afternoon. I commenced to play about 5 hours of Fallout 4 and now my eyeballs hurt.
- 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.