I’m laying in a bed at Johns Hopkins with a tube down my nose and two IVs in my arm and port. I just had a hit of Toradol, which cuts the pain and swelling from the nasal tube in half and makes life somewhat livable for about an hour. Then I have to wait another five hours for the next shot. I’ve had an NG tube in my nose for 9 of the past 11 days so my sinuses are in full-on revolt: my left eyeball (on the tube side) feels like it wants to pop out of my skull and my head pounds with pressure. They can give me Tylenol to cut down on the headache but they will only give it to me as a suppository. At this point I’m ready to jam a woolly mammoth up my ass if that would provide any relief.
We were in the middle of our vacation week in Delaware, and I went to sleep on Monday evening after a lovely day on the beach and tasty dinner. I took a leak at around midnight and laid back down with some stomach pain, thinking I’d waited too long to pee. The next morning the pain hadn’t gone away so I drove myself to the urgent care in Lewes, who then referred me to the ER. So by the time I was seen by a professional it was around 4 or 5 in the afternoon. They shot a MRI and made me wait around until evening before sending me on my way, saying I just had some abdominal pain and that it would work itself out.
Wednesday morning was better, and during the day wasn’t too bad. I was able to get out on the beach with everybody. But after dinner, the pain came back and by midnight I had to wake Jen to drive me back to the ER. They looked me over again and immediately stuck an NG tube down my throat, which began suctioning sickly green fluid out of my stomach and providing immediate relief: I had a bowel obstruction.
Thus began a long cycle of laying and waiting and getting up and walking and peeing and praying for pooping. I shared a room the first night with a quiet guy who played FOX News all day and all night on his TV. He cleared out after the second day and was replaced with a giant kid in his mid-20’s who was admitted with severe pancreatitis, and who played Law and Order all day while he detoxed.
Jen stuck with me every day into every night, making sure I had everything I needed, making me walk the ward, holding my hand, and giving me the support I needed. She got the vacation house packed, arranged for Finn to stay at her sister’s house, rented a creepy AirBnB close to the hospital, completed a bunch of freelance work, and kept the family running while my gut slowly unkinked itself.
By the weekend I was beginning to see some movement in my bowels, and by Monday or Tuesday I started pooping: some of the stuff was working its way out but the MRIs and X-rays all showed it still was partially blocked. This was progress! I was proud of those poops! I took pictures of them on my phone to prove they had happened. BEHOLD, MY PROGENY. I have to remember to erase all of them now because nobody wanted to see them.
The doctors pulled my NG tube on Wednesday, clearly impressed with my pooping, and moved me up to clear liquids for food.
On Thursday they moved me up to “soft solid foods” and handed me a plate with four thick slices of turkey, beans, mashed potatoes and gravy for lunch. Having been withheld real food for over a week, I destroyed the turkey and potatoes. About two hours later my stomach was in full revolt. I finally got up to walk around, that jumpstarted my nausea, and I wound up throwing up half the meal into a pink bin. Later in the day the other half made its way out. I had to ask them to put the NG tube back in, which is equivalent to me asking for someone to chop my leg off.
Behind the scenes, Jen was in contact with my abdominal surgeon at Hopkins, and they started the wheels turning to get me moved to Baltimore. From what we were told I was going to have to wait a few days before a bed opened up but on Friday morning they told us I was leaving that evening. A crew of three EMTs showed up, strapped me to an uncomfortably narrow stretcher, and drove me via Dover back to Baltimore.
So where did this bowel obstruction come from? They tell me it’s a result of the surgery I had in December. Because they were in my abdomen and digging around during the surgery, and because they used radiation on all of the nearby tissue, there were scars and adhesions left on my intestines. This could have happened at any time but the doc we spoke to in Lewes told us this is exactly the time it would show up after the cancer surgery and treatment.
Things I have learned:
- NG tubes are an invention of Satan.
- I have a horse’s tolerance for morphine. They hit me with 4mg every four hours in Lewes and I swear it lasted about 1/2 hour. Toradol too–and Hopkins is chintzier with it: every six hours.
- The antibiotics I’ve been on make me weep like a baby. I couldn’t make it all the way through The Force Awakens last night: Great gasping sobs. A dish soap commercial about washing crude oil off ducklings: BAWLING.
- I have watched all of the episodes of NCIS I care to watch, ever.
- Nurses are amazing people and I have the utmost respect for them and their jobs. (I knew this already but it bears repeating).
- Modern television is 1 half programming, one quarter commercials, and one quarter restaurant commercials designed specifically to torture me. I don’t know what Nacho Fries are but I WILL HAVE THEM.
As I walked out to my bright red wagon when we finished those tacos, I felt a thrill go up my spine as I unlocked the door. I have the ability to go anywhere, I thought. I am moving under my own power. It’s such a simple, every day thing that I can’t help but celebrate. Every day is now full of these small victories, and I’m slowly becoming master of my own destiny again.
Erin Marquis is the Managing Editor of Jalopnik, a car-focused blog I read every day, and is recovering from thyroid cancer. She wrote a great post on her first drive after getting back on her feet from treatment. Thyroid cancer is no joke–she’s got to deal with shitty medication issues every time she has to get scanned–but I can relate to the heady feeling of freedom that comes from the first drive after a long time off one’s feet.
Brian (Mr. Scout) and I have had a longstanding plan to go up and visit Barnes IH in Pennsylvania, from way back when I was just getting on my feet after surgery. We made a plan months in advance, which I now know was part of a nefarious scheme. But I’m getting ahead of myself.
He picked me up last Saturday, early in the morning as I was mowing the lawn for Jen. She had planned a tea party for Finn and a bunch of her friends that afternoon, and I wanted to help out as much as I could. Because Brian is the kind of person he is, when he offered to edge and blow the front walk I took him up on it without a second thought. Once that was done I kissed the girls goodbye and we hit the road for Pennsylvania.
On the way up we had plenty of time to catch up and talk about life, which is something I don’t get to do with many of my friends. Brian is an honest, open guy, and we’ve always been able to talk about real stuff without feeling weird. It’s something I don’t often get to do outside of talking with Jen, and it felt good.
The second half of the trip to Barnes IH, after getting off the highway, is through beautiful rolling hills and past picturesque farmland. His place is a converted horse ranch, and he’s got a gigantic modern barn with storage and workshop space, a parts counter, and restoration shop in the back. We got to talking and quickly found where the circles overlap in our Venn diagram of friends. Then he took us on a tour of the shop, which absolutely bowled Brian and I over. he’s got about 20 parts Scouts outside the shop which he’s slowly picking over. We then hopped in one of his running Scouts and checked out the back section of the farm where there’s a patch of woods and another 40 trucks in various states of decay.
Back at the shop we talked over how we’re going to get Brian his next Scout, lamenting the fact that they’re getting harder to find these days and the prices are going up rapidly. I talked to him about a rewire job in Peer Pressure, which will take some saving and planning, but something that’s desperately needed. Then he took us to the storage sheds where he’s got probably 100 motors of various sizes, shelves of engine parts, and transmissions waiting for buyers. Next to that there’s another barn, originally set up as horse stalls, now filled with sheet metal parts. It was like Valhalla.
We said our goodbyes after about an hour and a half and then set course for the Strasburg Train Museum, something I’ve seen on maps and heard of but never visited. The facility is huge and stuffed with trains mainly from the Pennsylvania Line, but also some from other operators as well. The exhibits inside are all in excellent condition, gleaming and refurbished like new. There are side exhibits with storefronts and railroad epherma, and a whole room dedicated to model trains for kids to play with.
We got out of there at about 2 and hunted down some food at a local brewery. The food was good and the beer was delicious. At that point we figured the day was getting long, and Brian told me the junkyards were closed at 4:30 (I believed him) so we drove home and parked in our quiet driveway. We walked inside and I found that there were about 80 people in my house waiting to surprise me. Jen had pulled off a FANTASTIC bit of chicanery and organized a post-cancer belated birthday party for me. I was absolutely flabbergasted. My family was in the dining room, my work friends were in the living room, my Scout friends were in the kitchen, the neighbors were in the hall, and everybody else was tucked into corners throughout the house.
She’d done the work of ten people in six hours–and that was just what she’d moved the minute I was out the door. She’d been working on cleaning up the house for the last month, claiming it was past due for a deep clean, and dropping hints about parties for Finn as her cover story. She got me good.
The rest of the day was like a wedding: I talked to everyone I could for as long as possible, but I still missed out on people here and there. It was amazing to have most all of the people I love in one place and laughing together, and I was humbled they were all there for me. Thank you to everyone who came, and the biggest thanks of all go to my girl for such a special day.
There’s been a lot of small stuff going on around the big stuff, so I’ll just list it out here.
- Last weekend I got my first haircut since cancer. Things look MUCH better now.
- The event I shot at the National Geographic Society this past week went off without a hitch. Mae Jemison was amazing.
- I shot with a Canon 5D Mk4 at the event, and I am in love with that camera. More on that later.
- Today we washed and vacuumed both of our cars for the first time since cancer. What a difference.
- Speaking of cars, the CR-V has been off the road for weeks with sketchy brakes. It now has new calipers on the front and things are much better.
- Tomorrow my Scout friends are going to stop over and we’re going to finish up the rear drums and leak test the system. Hopefully Peer Pressure will be on the road by Sunday evening.
- I’m going in to the hospital this Wednesday for a 4-month cancer checkup, CAT scan, and general update.
- Jen is going to be my production assistant at the shoot in DC this Thursday: she’s learning how to shoot video and I will be grateful to have her there with me.
- I’m officially headed off to Colombia in two weeks to shoot video for one of the programs at WRI.
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).