Nothing new to report on radiation, other than fatigue in the afternoon. I’m sleeping heavily at night and it’s hard to wake up in the morning–although that could be due to our new morning schedule starting at 6AM, and the lack of sunlight at this point in the season. Laying on the table with my arms above my head was tough on Thursday because the port was sore and swollen but today was much easier. One day’s rest made a huge difference.
Thursday after treatment we went upstairs to attend ‘chemo class’ where they explain what will happen and where we’ll go when things start. It’s a smaller waiting room in the corner of a hallway and it was already filled with people at 9AM. The class was short and to the point and aside from some dumb comments by the friend of a fellow patient (I don’t give a shit about pissing my chemo drugs into the storm drains, you dumb bitch, I HAVE CANCER) pretty painless.
At work, I wrapped up as much as I could, logged out of all my sites, and put the “working from home” sign on my computer. I have no idea when I’ll make it back there.
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On a brighter note, we got five presents dropped off at the house this afternoon: new windows for the bathroom upstairs. With all that’s been happening this summer I haven’t been that focused on making progress there, but a fortunate phone call saved the day. I’ll explain. One of the contractors I had come in and bid on the job sent out a window guy to measure and write up an estimate as a sub. I showed him the space and we talked over the plans, and he figured each window wouldn’t be more than $250. He left before I thought to ask him for a card. We got all the estimates and had to punt because all the bids were $15K higher than we expected. I still wanted windows and knew he had measured the openings correctly, so I figured I’d try to find him. I knew he worked for 84 Lumber but not where, so I called around all the stores looking for him with no luck. A week later he called me out of the blue to ask a question, and I told him the situation but I wanted to order the windows. A little back and forth, a look at a sample window, and the deal was struck.
We have a guy standing by to put them in for us, who’s worked on our neighbor’s house and whose work we like. He’s going to stud out the walls, frame up the new closet, cover the unneeded windows, insulate everything, and prep for drywall. The price he quoted is fair and affordable, and we’re going for it.
Radiation is pretty much just repetition at this point. The worst part about it is getting the family out of bed at 6AM. Today Jen and I stayed at the hospital for a few more hours to have a port put in my neck, which will make the administration of the chemo drugs safer and easier on my veins. This involved going upstairs to the outpatient wing, checking into a kiosk, checking in at a desk, signing some papers, checking in at another desk, and waiting in a room until they called my name. By 8:30 my head was pounding from lack of caffeine although I’m down to a cup of half-caf so by the time they brought me back to suit up I felt terrible.
In the waiting room we ran into our neighbors again, who were doing a procedure of their own; They wheeled him in about 20 minutes before me. We joked on his way past that I’d hold his hand under the curtain while they worked on us. The phlebotomist was a pro and had my IV in without any sensation at all, and then they wheeled me down a couple of hallways to my OR.
I woke back up in the recovery room feeling groggy and slightly nauseous, and that feeling only intensified the more I stood up. When I had the biopsy I puked in a trash can as I got dressed but this time I was able to wait until I made it home; the act of walking from the car to the front door was enough to send all the crackers and apple juice I’d had right back up. Between my head, the pain from the port, and my heart racing I napped poorly until the girls got home, and then was able to have some bites of food before napping again. Once I woke back up at 6:30 I felt much better and have been moving around ever since.
Having the port is an odd sensation. It feels like I pulled a muscle in my neck until I raise my right arm or twist my neck and then I realize there’s a piece of plastic in there. Ewwwww. But if it’s a simple way to draw blood and take medicine without repeated needle sticks, I’ll live with it.
Today’s selection in the Radiology room was slow jams. As long as it’s not Norwegian Death Metal, I’m pretty game with whatever they play. Shit, there was a song on the other day that I liked, and when I looked up the lyrics this morning it turned out to be Lana Del Rey. No side effects to report yet, although my radiologist says that’s something that will show up towards the end as a cumulative effect. He seems pretty confident they can shrink it especially as the chemotherapy kicks in; this is in contrast to what we first heard where they said it wouldn’t reduce in size at all–and possibly swell larger. He seems confident and he’s happy I’m not having any issues with my bottom system (knocks on wood) which seems to be everyone’s big concern.
After our quick checkin with him, I had blood drawn upstairs in preparation for both the port install and as a baseline for chemo next week. Tomorrow will be a mostly full day at the hospital. Radiation in the morning, sitting around until 11, then half an hour for the install. After that I sit around for a couple of hours while they observe me to make sure I’m not hosing down the room, and then they kick me loose.
Next week I’m going to be sitting in chemo for most of each day and possibly doing some work in the afternoons, but I’m not betting on feeling up to doing anything. Week two will be the true ass-kicker, and on week three I’ll hopefully feel human again.
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When we walked through the mildew house back in June, one of the things I found in a drawer was a broken diver’s watch that was encrusted in dirt. I liked the dial and thought it was cool so I threw it in a box with the other stuff we took home. A month later I found a jeweler in Baltimore who offered a watch repair service, and dropped it off with them. It came back clean with a new bezel keeping pretty accurate time. I threw a NATO band on it and wore it for a while but I kept thinking about a picture I found of the same watch with a leather band when I was researching it.
In August I paid $30 to a nice woman in the Ukraine to make me a watchband that matches one I saw in the picture. It showed up yesterday and while I’m still getting used to the fact that it’s not a utilitarian nylon strap, I’m growing to like it more and more.
This morning’s radiation went smoothly and quickly, and they played Fleetwood Mac. I was on the train platform by 8:35 and at work by 9:30. Appetite is normal, functions are all normal—I’m peeing more these days and it takes some coaxing to empty the whole jug, but it’s working—but today at 2:00 I felt the gauges all dropping to zero at once. I had to get up and walk around to keep from passing out at my desk. Luckily there was a lot to do in different places, so I kept busy as much as I could.
Wednesday they put the port in, so I’ll be at the hospital all morning and working from home that afternoon. There’s nothing about the procedure that sounds good to me other than the fact that they won’t keep sticking me in the arm to give me the chemo drugs. I still feel (mostly) healthy; I can’t believe they’re going to do their best to almost kill me twice before cutting me open. None of this seems real.
I don’t have a selfie of me in a gown today; that’s probably getting old. Radiation is pretty much the same; I avoided mooning anyone, which is good. No bowel exodus to speak of, appetite is normal (Shake Shack for lunch!) and no soreness or swelling.
Fun Fact: I now weigh more than I ever have in my life, give or take a few pounds.
I got the proofs of all my film back this afternoon, and I’m THRILLED. I sent five rolls off, one from the Rolleicord, two from the Yashica, and two from the Minolta 35mm.
The Rolleicord roll turned out to be ancient, and did not hold up well in the camera. Which is a shame because there are some beautiful shots of Finn in there, including this one:
That dates back to September 2011, when we were down in North Carolina with Mr. Scout.
The two Yashica rolls turned out better than I hoped, including these two shots:
These were metered by using my digital cameras to approximate the aperture and ISO settings. I could not be happier with these pictures, and I’m going to have them both blown up and printed.
We also got these shots from the family portrait session:
Looking carefully at the edges, there’s some circular distortion around the edges at wide aperture, which makes for an interesting bokeh effect in the leaves behind our heads. I don’t see it in the portraits at the top but it’s visible in these two. These bottom two were taken with the now-operational light meter, which means I’m on the right track.
Finally, the Minolta had some interesting shots, from years ago and the new:
The first one dates back to probably 2010 or so. The B/W shot is from our vacation this year.
Is shooting with film expensive, tricky, and slow? Yes. Is it rewarding? Hell yes.
There’s about eight different techs who handle radiology at Hopkins, and in three visits I think I’ve met them all. Because they have to align the dots on my stomach, they have to hike up my gown after they’ve covered my bits with a sheet. This choreography has gone well, and everything that needs to be covered has remained covered. However, I’ve mooned at least three of them getting up off the table, including the nice student who has been quizzing me on brewing beer. I’m slowly coming to terms with the lack of dignity a hospital stay affords the average patient; I just have to accept the fact that they’ve seen butts before and mine is no different.
Day 2 was no more uncomfortable than Day 1, but the music was better: Motown instead of classical. We celebrated by going to Miss Shirley’s for breakfast, because we had to stay in the city for a 3PM appointment with the Chemo guy. I did notice, on our way out of the restaurant, that the side effects have begun. We were about to cross the street to the parking garage when I did a 180 and made a beeline for the bathroom; it was time for everybody to GET OFF THE BUS. This afternoon I’ve noticed fatigue beginning to hit as we sit waiting for the chemo appointment.
As we sat in the waiting room for the chemo appointment, we ran into neighbors from several streets over, who were in for their appointment–the same folks who got us the referral to Hopkins in the first place. We sat and traded stories until they called us both in. What a shitty place to meet up with friends.
Our doctor is a very nice man who took an hour and a half to go over my background, do an exam, explain what’s going on, and then outline his plan for treatment. It’s a lot more involved than we were originally led to believe. I’m going to be doing two rounds of chemo during radiation to supercharge the process, and then I do the surgery. After I’ve healed up from that, I go back to do two more rounds of chemo to make sure we got everything. This puts the treatment plan out into the beginning of next year, if I’m not mistaken.
Fun Fact: only about 15,000 people in the United States get this kind of cancer, and the one I’ve got is a rare version of that type.
He described the two drugs he’ll be giving me, the procedure for doing so (adding a port in my neck, eeeeww) and the side effects we should expect. I was hoping for a pill but these will be intravenous, and I will lose my hair, along with a bunch of other less pleasant possibilities.
Your humble correspondent reported to the Radiology Department at Johns Hopkins this morning at 7:20AM for the first of 25 radiation treatments. This involves nuding up from the waist down, putting on a gown, and laying on a table surrounded by big white boxes suspended on a round gimbal. I try to keep from flashing my junk while two helpful techs come along and align the lasers with three marks permanently tattooed on my waist (yes, I made it all the way to 46 without a tattoo and what do I get? three tiny dots–thanks, cancer) and then I hold my arms up above my head and they all scurry out of the room to avoid the radiation while the gimbal slowly spins the boxes around my stomach. This process lasts about 20 minutes. Then I get up, get dressed, and go to work.
I didn’t feel anything while they were doing it; I was half-expecting heat, but felt nothing. My stomach is slightly burbly this afternoon but I don’t know if that’s due to nerves, food, or nuclear medicine. We have an appointment with the chemo guy tomorrow at 2 to find out what to expect there; I’m hoping it doesn’t involve losing all my hair and projectile vomiting.
Yesterday, Jen and I jumped in the car and drove all the way into Baltimore and parked in the garage and walked to the Radiology department and checked in and sat in the chairs and waited only to have someone come out and tell us the machine broke. So we got a new appointment for 2PM today where we’ll do the whole thing over again and pray that something actually happens. I was pretty quiet for most the day yesterday but even quieter after we got home, because I’m waiting for something to fucking happen.
Yesterday’s Today’s appointment is to get all set up for the first treatment, but they’re not actually going to shoot me with anything–that happens today tomorrow. At a time that we don’t know yet because they can’t schedule us until we’re in the room, or something.
It’s been three weeks since the initial diagnosis, and I’m getting pretty impatient. The radiology folks have been absolutely stellar in getting back to us, talking to us, facilitating treatment, and generally keeping us sane. I’m supposed to have chemotherapy with the radiation; we haven’t heard a peep from the chemo doctor yet, and I HAVE QUESTIONS. Nobody is shooting me up with anything until I know what the fuck is going on (if some rando shows up on Wednesday with a needle and a smile, I’m going to slap that shit out of their hand and have a nice long chat in my Dad-talking-to-Finley voice) and what I’m supposed to expect. Are they putting in a port? What can I eat? What can I drink? Will my hair fall out? Will it knock me flat or do I have any expectation of having half of a normal life? Do I qualify for medical marijuana? Because if I can spend at least a little bit of the Trump Presidency doing legal bong hits with a hole in my chest, I’M GAME. It’s all about the silver linings here.
I spent most of the rest of yesterday trying to stay out of an angry funk, which was not easy. We walked over to the school to pick Finn up and stood out in the field talking to other parents while she played. She and I picked up Goblet of Fire and started reading it again (we got stalled when she got scared) after dinner, which was great. And some friends brought over a big bag of cookies, which was very appreciated. (I ate more than a few last night after putting Finn to bed). Because if I can’t smoke dope, I’ma eat the shit out of some cookies.
The latest word is that the baby hasn’t gotten any larger. Monday’s CT scan shows nothing new, which means I’m cleared for chemotherapy as well as radiology starting next Monday. Beyond a little that I’ve read I have no idea what to expect in the coming month, but I’m going to do my best to stay strong and motivated.
That’s a lot easier said than done. I think I’m suffering from a low-grade depression right now. I’m afraid to start any projects because who knows if I’m going to be able to finish anything while I’m dealing with this. I don’t want to read too much about the coming treatment because the internet excels at scaring the shit out of anyone researching anything; I think it’s already taken about 10 years off of Jen’s life. I’m not that interested in mass media as a diversionary tool; I find myself flipping through my internet bookmarks in search of little hits of dopamine, wasting time. Work is OK and everyone is understanding and supportive and awesome but I have moments where I’m listening to people talk and wondering why the fuck any of this matters. I’m struggling to keep from withdrawing into myself, which is an easy but selfish way to deal with this situation; I look at Jen and Finn and know that I have to be present and focused for them.
I got some news out of the blue on Tuesday that sent my mood further south. It doesn’t have anything to do with my medical condition; it’s a voice from the past that started shouting again, and for reasons I won’t get into here, I’m keeping it on the down-low. It’s been a shit couple of weeks, really.