After early-morning bloodwork and a CT scan, the word is in: no surprises in my chemistry, no new passengers on board. This means we slow my visits from twice a year to once a year, and my chances of recurrence have dropped again. Good news we all needed on a Monday after a long, hard weekend.
Tomorrow marks a pretty important milestone: a year ago I started chemotherapy for my cancer. For my family and I, it was a long walk into the unknown. I had no idea how it would impact my day-to-day life and health, or if it would hurt, or if I’d be barfing all over the place every five minutes.
Jen and I took an early morning walk last week at the beginning of the first real cold snap, and it made us both think of chilly, dark trips downtown to be at the chemo ward when they opened the doors. That was a major strain on us, on Finn, and on our friends, who were gracious enough to take her in every morning to make those trips possible. I don’t miss those mornings at all and I’m sure my family would say the same.
Chemotherapy is like visiting a closed country for a lot of people; you hear bits and pieces of stories but rarely do you get first-hand knowledge from a fellow traveler until you’re already there. And of course, it varies from person to person depending on what flavor of the Big C you’ve got.
Hopkins had a very pleasant chemo ward when we were there (well, the ward was nice; the waiting room was no better than the DMV) set up with little pods where patients could lay down while being treated. Apparently now, since they’ve moved the entire cancer operation over to a new shiny building, it’s even nicer (my last checkup was over there, and the place is like a museum, in a good way) but I hope I never have to compare the two first-hand.
The process of infusion was pretty anticlimactic in my experience. I’ve said before that my radiation treatments were harsher than the chemotherapy was, and it snuck up on me quickly toward the end of the second treatment cycle. We went in, I laid down, they hooked me up to a weird pump, and we hung around for a couple of hours. I did find that the idea of food got sketchy around the middle of the week and there were certain foods I did not want to think about at all. In this respect I can say that I have some small understanding of morning sickness; where once I had a cast-iron stomach, the mere smell of some foods was enough to make me feel like puking.
I hated being hooked up to all of the pumps, especially when radiation poops set in, and I’d have about 30 seconds to hustle my ass to the bathroom before the dam burst. Doesn’t sound too bad at first, but after the fifth time in five hours it sucked. I hated being dependent on those beeping, grunting boxes and all of the fucking tubes strung between us like tangled headphone cables. I hated the smell of the cleaning solution they used in all of the rooms, and the stink of the chemicals most of all, especially as they leached out of my skin.
I still have souvenirs from my experience. There’s still a port embedded in my chest, which comes in handy for blood draws and random visits to the ER, but looks gross and hurts when it rubs under the strap of a backpack. The odd numbness in my right kneecap is still there, and most likely never going away. I’m still taking Eliquis to avoid any clotting and will probably continue for the foreseeable future, even though my resting blood pressure is already low enough to cause alarm to unwary nurses.
But my hair is back, and my strength with it, and I’m optimistic for the future. I feel good right now, and I hope that continuing scans come back clean so that I can live life to the fullest, grow old with my family, and continue learning how to be a better human.
It’s official; I heard back from the doctors today and I can start taking Eliquis again and ditch the fucking needles. Thank god.
Meanwhile, I did some sleuthing and identified the model number of my missing sunglasses, Ray-Ban 4115. Apparently they aren’t available right now and I have no idea if they will be produced again; this makes me sad because they were hands down the best pair of sunglasses I’ve ever owned. I’ve got the local optometrist looking to see if they can get me a pair, but it looks like I’m going to have to find something else pretty soon.
At the risk of this blog devolving into Bill’s Poop Watch, I’ll give you a final update on the workings of my GI tract (because that is all I’m thinking about right now): I think I had the last of the IV poops last night, which is a blessing. During my stay in the hospital they had me hooked up to an IV called a TPN, which looks like milk and apparently contains all of the vitamins, minerals, fatty acids, and other stuff that helps keep a patient alive when they can’t actually eat food. They added extra potassium to this, because apparently I was low, and I can say from experience that potassium hurts going in–and hurts worse coming out. This was further amplified by my GI tract expelling stomach acid the only place it could. So in the ranking schema, IV nutrition poops are slightly below chemo poops in terms of comfort. Especially when they’re happening every two hours.
It was great to sleep in my own bed but three weeks of getting used to rock-hard hospital beds completely fucked up my back. And the hospital schedule screwed up my circadian rhythm so I had to double-dose myself with melatonin to get to sleep before 11PM. Plus, I was stupid and decided to sleep with the windows open so I suffered through 100% humidity last night and got lousy sleep. Tonight I will set the A/C on “meat locker” and hopefully enjoy better rest.
Meanwhile, I’m a weak, achy mess. My conditioning is completely gone so I’m huffing and puffing up stairs and struggling to rise from my knees to a standing position. I’m popping ibuprofen every four hours to keep my joints from exploding. With that in mind, this morning I put my laptop in my backpack and walked down the street to Atwater’s to treat myself to another cup of decaf and a blueberry muffin as a reward for jabbing a needle of blood thinner into my leg without screaming. They have me on Enoxaparin, which calls for a subcutaneous injection into the stomach or other fatty tissue to prevent blood clots. My body fat index was low before I was in the hospital wasting away to nothing; I’m probably hovering somewhere above “skeleton” and just below “starvation” on the charts at this point. Months ago I had to administer these shots after cancer and gave up on it (when I actually had more fat) because the medicine would shoot out of my skin in a stream the moment I pulled the needle out. Why they can’t let me just take my goddamn Eliquis, I don’t know.
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It was Prime day while I was laid up in Delaware, so I scrolled through the deals and found a great one on a Hero Session to replace the Hero 3 I’m selling with the drone. I used a couple of Sessions when I was in Colombia and found them very easy to use, so I’m familiar with the drawbacks and advantages of the model. I also scored a new HD Fire for Jen to replace her 3-year-old model. Unfortunately at some point my Moleskine ingested a cupful of water while on my bedside tray at the hospital and became completely ruined (as well as smelling like SHIT) so I had to reorder another one to replace it.
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As mentioned in Instagram, during my absence the tomatoes in the greenhouse went absolutely nuts. And the cucumbers! I’d set up a drip hose on a timer before leaving for the beach to water everything for 15 minutes at 6AM every morning. Apparently this made everything happy, because almost all of the plants were bent double under the weight of all the fruit. The cherry plants are absolutely covered with fruit; I’d say four times the amount before we left. Even the balky heirloom plants are heavy with fruit now; I had to plant Jen’s 7′ tomato cages in the ground next to the tubs and lift the bent stalks to rest on top of each.
It’s all gotten too leggy to cut back, so we’ll just have to ride out August the way things are. I’ve got to go back out and prune everything way back (after I’d propped everything up my bowels were rumbling) and do some maintenance, but HOLY SHIT. I can’t believe it. My head is already spinning with plans for next spring–moving the tables to the center, reconfiguring the drip hoses, changing up some of the varieties, and seeing what else might grow in there.
Sneezing hurts. Like a motherfucker.
It’s Sunday the 29th. I’ve been in a hospital for 18 days. On Thursday of last week I was in surgery to remove the obstruction, which involved opening up about 60% of the incision from my cancer surgery and digging around in my abdomen. They eventually took out between 3″ and 4″ of my colon and sewed things back up, so I’m nursing a new(old) scar on my stomach.
As of today I’m on unrestricted clear liquids, which means exciting things like Jell-o, broth, and italian ice. My bowels have been voiding themselves with precision timing every two hours. Have I mentioned I’m still hooked up to two IVs? One is saline, the other is TPN going in through my port, which is supposed to be a full suite of nutrition but which makes my ass burn every time I use the bathroom. Eating this food isn’t a problem, but I am having random stabbing pain in my gut that doesn’t seem to be connected to anything. I’m hooked up to an on-demand IV drip of hydromorphone but I haven’t used it since yesterday.
Hospital life is the most boring hell I think I could imagine. I’ve got about 50 channels of DirectTV, maybe 5 of which are actually worth watching. I’ve got my laptop but I’m bored with the internet. I’m tired of streaming movies or watching crap TV shows. I can’t walk around much because the ward here is small, and I’m cold most of the time. So I sit in bed and stare listlessly at the TV or my phone or the laptop and hope there’s something interesting happening outside.
They say I’ll go to full liquids tomorrow, which include stuff like cream of tomato and cream of potato soup (the stuff that made me cry with happiness back in December) and pudding and coffee with cream and other good shit like that. So there’s that to look forward to. One of the docs said they might cut me loose on Tuesday if things keep progressing. At this point I’d be happy to get all of the IVs pulled as soon as possible so I can sleep better.
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.
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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.
