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.
There’s not much to write about around here, really. I’ve spent the last two weeks getting as much exercise as my body will tolerate, sleeping a lot, playing Fallout 4, eating, and trying to stay warm in this frozen hellscape we call Maryland. Today I’m gingerly working from home to prepare for next week, when I physically shuffle back in to the office. Yesterday we played an extended game of hooky for MLK day and saw Coco in the theater. I would recommend it to anyone; it was another great Pixar movie.
Today I ordered a shitload of tile for the upstairs bathroom. Now I have to figure out how to order the heating system we need. This will probably involve me driving to one of their dealers to advise me on the correct amount of materials; the heating unit uses one cable that snakes under the floor which has to be the correct length: it can’t be cut if it’s too long.
My cousin sent this to me last week, and I recognized the rig after seeing the custom rear bumper. It was featured in a build thread on the Expedition Portal that wound up lapsing. Now it’s being offered for $70-90K at auction. Unreal. There are things I would have done a little differently (the wheels sit strangely offcenter in the wheel wells, a casualty of the lift they installed) but overall it’s a nice build.
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.
Yesterday morning, we watched via FaceTime as my sister married her fiancee. They did a small ceremony with my Uncle Brian as officiant, which was full of laughter and love. There isn’t much more I can say about it other than congratulations!
Jen convinced me to visit the ER yesterday afternoon to have my arms looked at. The earliest my GP could see me was Monday at 5:20 and that just seemed too long to wait. We went to our local Hopkins affiliate hospital and were greeted with a small temporary waiting room jam-packed with people. They got me in for triage pretty quickly and signed me up for a sonogram, and then we waited for about four hours to have that done. That experience reminded me a lot of watching Jen get sonograms with Finley, except for the fact that it was me on the table and the nurse had the wand jammed up my armpit. She took a lot of pictures of my left arm (even though I’d told the nurse it was both arms they only wrote up the order for my left) and then they sent me back to the waiting room. We’d gotten there at 1:30 and it was almost 9:30 before we made it to the ER itself; at 10 a doctor appeared. Apparently there’s a bloodclot up in my neck that’s putting back pressure on the veins in my arms.
I’ve been using a blood thinner they gave me on discharge, but because it’s a subcutaneous shot I’ve had little luck administering it to myself. I go in at an angle with the needle and it fills a pocket of my skin up with medicine and then starts to hurt. I pull the needle out and all the medicine shoots out of my skin like a faucet. Rinse, repeat. It’s a pretty good bet none of the blood thinner was getting to me, but I was complaining about this in the hospital before they discharged me. They switched me over to an oral medication to get away from the needles and sent us on our way at 11PM.
A text conversation today with Mr. Scout reminded me that I wrote this back in July but never posted it. For posterity’s sake, here we go: I happened upon a new Scout to the neighborhood and stopped to check it out.
Looking it over, I noticed it was sitting on more street-focused tires mounted on stock rims, and I liked the look of them. I’ve been thinking for a long time about switching out the Mud Terrains I’ve got for something quieter and more comfortable, given that my driving is mainly on-road. It was for this reason that I bought a set of four wheels from Brian H. a few years ago–dry-rotted tires on a set of freshly powder-coated steelies.
My hope was to put a narrower set of tires on her, something with a smoother ride but equal height, but it’s impossible to find anything narrower than 11.5″ wide at anything above 29″ tall unless I want an even more aggressive tread.
This Scout is on General Grabber AT2’s at LT33X12.5R15, which is wider than I was considering but taller than I expected. His Scout was sitting on a comparable lift and the size in the wells looked right (I’m trying to avoid putting tiny tires on a tall truck). They are also reasonably affordable vs. comparable BFGoodrich or Goodyear tires in the same size. I’m not in a financial position to buy them outright, but I think I could sell the Mud Terrains on Peer Pressure minus rims and make some of that money back this spring.
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).
Amazing how the overnight appearance of 1″ of snow can shut schools down here in Maryland. All three of us are home in our PJs trying not to go insane. I’m happy to be home, of course, but I want to get the fuck out of this house. Jen and I have been making trips to the local mall and Target to walk around during the day, which has been good for me, just in terms of getting out and moving around, but after three weeks of inactivity, I feel like an eel trying to stand itself up straight.
My arms hurt more now than they did before.
New Years Day: I woke up at 8, and made eggs, bacon, and toast at 9:30 for the family. By 11:30 I was laying in bed again and napped for an hour. I had some lunch and then sat on the couch, sore, tired, and unmotivated. I don’t feel like doing a fucking thing. It’s too cold, I’m too sore, and I can’t really get up to much anyway. I’m not supposed to lift anything over 10 lbs., which is pretty much anything but a glass of water. Jen found a rice compress for my arms yesterday and I used that multiple times. It felt good for a while and then whatever was going on with my arms basically started ignoring it. More Tylenol, please. I have resolved that I will bundle up and get outside for a daily walk around the block or two, simply because laying around is just making me sore and bored.
We finished The Order of The Phoenix yesterday and celebrated by watching the movie over dinner. It’s amazing how much of the books had to be removed from the movies to speed things along, but I get it. 800+ pages of stuff isn’t going to condense neatly into a two hour movie. I ordered The Half Blood Prince from Amazon last night, as it’s the only one we don’t own, and we’re all itching to see what happens next. Meanwhile, the Ravens gave away their playoff hopes to the fucking Bengals. I’m glad I didn’t watch the whole game, honestly. I haven’t seen that many dropped balls since I taught Finley how to catch.