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.
We hiked up to the park on Saturday to take some family photos before I start radiation and chemo treatment. I brought the Fuji and the Yashica, loaded with a half a roll of black and white film. We walked down to a wooded, open area beside the river and did some tripod shooting with the timer, which was difficult due to the sun going in and out of the clouds; none of the shots metered the same. Then, based on some advice from a nearby hiker, we walked up a nearby trail to a beautiful waterfall and shot some more.
I’ve been having problems getting consistent color with the Fuji and I don’t know if it’s how I’m working with the camera or how I’m importing and processing in Lightroom. I want to love this camera more but it feels like the results I’m getting are regressing the more I shoot with it. I’m also concerned that my skill level is regressing.
The Yashica is a crapshoot and I have no idea if anything I’ve shot will come out, but that’s been the fun part. I’ve got two rolls of 120 dating back to our vacation that I’m keen to have developed, two rolls I shot with the Minolta, and another roll I found in the Rolleicord I’d forgotten about. Most of the stuff I shot with the Yashica was guesstimated by using the meters from other cameras, but I’ve been working on getting a Gossen Super Pilot light meter to work for the past couple of weeks. After some confusion with the replacement battery I purchased, I got it working relatively well. I’ve still got to do some testing with a modern camera to see if the readings are correct.
All of the film is getting sent off to thedarkroom.com, who developed a handful of mystery film for us back in April. My fingers are crossed for a couple of good shots from each roll; I’d love to get some blown-up silver gelatin prints of us from each, if possible.
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.
I’m currently reading Here Comes Everybody, written by James Fearnley, the accordionist of the Pogues. It starts out with a little of his background before the band formed, how he met Shane MacGowan, and how the band went from tiny gigs in run-down London pubs to breaking out and being an international hit. Fun fact: Before the Pogues broke, Fearnley was asked to play guitar in Culture Club. (previously, previously)
Word is getting out. I’m pretty weird about sharing personal details with the general public (which is why this weblog has been dry for the past 16 years) but people are hearing on the grapevine that Something Is Wrong and we’ve been getting notes and beer and food left quietly on the doorstep from friends–something that’s extremely appreciated and humbling.
My friend Brian had his house burn down a few months ago, and afterward he talked to me about how people he barely knew were coming out of nowhere with offers of help, clothes, food, support, and money. He and his wife were overwhelmed and he said that it was hard to accept aid and comfort from people; he didn’t know how to do it and felt awkward about welcoming that generosity into his life. I can understand that, being a fiercely independent person–I want to do things for myself, and I hate asking for help.
This situation calls for a completely different mindset, because we’re going to have to lean on everyone we know to get through the next four months. I’m no better at asking for help than I was yesterday, but I’ve got a small pile of letters on my desk from friends offering support that will get a return letter of thanks to try and show my appreciation for that kindness.
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That being said, it’s still abstract to me. I’m still thinking like I’ve got another 45 years left, when I’m supposed to be thinking in terms of 5 years. I’ve purposefully stayed away from reading about it on the internet, because the internet is built to scare the shit out of you, and I’d rather listen to the doctors I’m entrusting with my care, who have medical training and experience to answer my questions, not horror stories and half-truths. Because I’ve always operated as if I was going to live to 90, I’m having to refactor every long-term plan I’ve been working on: career, fatherhood, travel, retirement. They are now set to a ticking clock that I can’t see, and the sound just got a lot louder in the back of my head.
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I’ve been pretty lousy about writing here in the past couple of months, but I realize now I’ve got to make up for some spare time. There’s a new category called cancer that will be the catch-all for disease-related ramblings, but I’m going to try to focus more on focused writing at least once a day. We’ll see how it goes.
My list of daily links has gotten pretty stale over the last couple of years. I’m outgrowing some of the standard destinations that used to get me through the day; some aggregators have dried up, been bought, or gone out of business. The original inspiration for this website were the other weblogs I saw written by live humans who found things interesting and wrote about them; most of those people have jumped to Twitter and let their weblogs go dark.
I used a site called moreofit to search for websites similar to those I still frequent, and I’d say that about 10% of the suggestions are still updated regularly. Many of the suggestions are ones I followed back in the day, and a fair number of them trailed off between 2010-2012 as their authors moved on to different things (went corporate, left web design, bought a farm, or just disappeared). I did find, in that 10%, a couple of old favorites and some new suggestions. But it isn’t the same, and that’s sad. The commoditization of the internet is pretty much complete, and the do-it-yourself ideology, the idealistic, electric feeling of having one’s own place to post pictures or write about feels or show off code is gone. There’s Twitter, Facebook, or an app for that.
I think it would be interesting to try and organize a meetup of people who still have weblogs and talk to them about why they still write on their own site, if they write as much on social media, how they view their weblog now vs. when they first started it, and if they ever see themselves giving it up.
(1. Because social media is depressing. 2. Instagram only. 3. I view it almost the same now as I did then; I will admit that it’s harder to post every day but it’s still something I look forward to. 4. Doubtful; it’s served as my mobile memory since 2001 and I can’t imagine giving up the habit now.)
I did find, through clicking, a new theme for WordPress which could be the base for a modernization of idiotking here, too.
After a long day this is the face of a busy tired happy girl.
I’ve seen a lot of waiting rooms in the last month. Big ones, small ones, with hard plastic chairs and comfy faux-leather recliners. They all have the same five magazines, though. People, Us Weekly, Sports Illustrated, Men’s Health, and Sport Fisherman’s Monthly. Some of them have TVs, which are almost always tuned to HGTV, showing reruns of House Hunters or Flip or Flop. These programs are designed to be as vanilla and non-offensive as they possibly can be, even though they are depicting the real-world struggles of couples having to decide between which of three caribbean islands to purchase, or agonizing over whether to add the tennis court or the infinity pool to their mansion.
All of this is to distract you from the fact that they’re going to bring you in a room and tell you that some part of you is broken.
When we saw the three doctors before our vacation, we knew that things weren’t good, but two of them had told us that things looked benign. We asked them point blank whether we should go on vacation, and they said that we should, so we did. For a lot of reasons that made sense then, and still do now, it was the best choice, and I’m glad we had that time to relax and be together.
I got a call from Surgeon 2’s PA with some preliminary biopsy results last week: a leiomyosarcoma, which is a cancerous mass originating out of muscle tissue, and usually aggressive in nature. We saw him in person yesterday and got the first face-to-face confirmation of what I’m facing: surgery to remove the tumor, and under his breath, probably some of my bowel. This thing is big enough that it’s taking up most of my pelvis and the rest of my organs are shoved up under my ribcage, but my bowel is where it should be and somewhat compressed. He was positive and nonplussed, scheduling surgery for October 2 to go in and get it out. We thanked him and left, feeling cloudy on the details.
When we first got opinions we didn’t get to meet Surgeon 3, from Johns Hopkins. We’d been referred to the bone guy in his group, who came off like Debbie Downer, and we decided to go with the other two opinions because they came from soft-tissue experts. Today, we met first with an Oncological Radiologist in his practice, who sat us down and explained how Hopkins was thinking they wanted to shoot it with radiation for five weeks before attempting surgery, so that the chance of recurrence in the future would be smaller. So according to him, the timeline to surgery moved back to somewhere in late November. Then we went to meet with the surgeon.
Surgeon 3 is a warm, pleasant fellow, who immediately explained what their collective thinking has been, why they were recommending radiation first (and possibly chemotherapy to help) before cutting, and what that would mean for recovery. What I’m looking at–and this is preliminary–is surgery to remove the mass, some of my bowel (if the tumor is leaching into other tissue) and possibly some of my bladder. While those parts heal they’d do an ileostomy for a few weeks while my guts heal up before reconnecting the plumbing.
He then answered our questions, in the clearest way possible, giving us the worst-case scenario because that’s what he’s supposed to do. I was stunned at this point, which is why I brought Jen with me to help navigate the details. When he answered the life expectancy question by saying five years is the standard measurement, I almost threw up on his pretty shoes.
I know they have to manage my expectations, and they have people who have gone ten and fifteen and twenty years after cancer. I know this is a rare and mean version of cancer that could come back anytime, especially given how big it is now. I know human bodies are imperfect machines that make no sense and do what they want when they want to.
I just want enough time with my girls to be here for the important stuff.
I shot this with an old Nikkor 50mm f/2 manual lens on the front lawn before Finn went up for bed. While it’s not the sharpest image, I love the look.