When I was in 4th grade, my teacher Mrs Barnacle (yes, her real name, and yes, it was in a seaside town), amongst other useful skills, taught us that you when you wrote out the date any day in October, you must make the capital “O” into a pumpkin. I have faithfully continued this hallowed tradition ever since. But somehow, the entire month passed this year without me writing out the date a single time. I don’t know how this happened. 

Well, perhaps I do, a bit. Starting the last weekend in September it was high season for Keep Salem Odd, my “superstore for the eccentric” little business, and every weekend plus some other days, I was in downtown Salem, setting up my stripey 10x10 tent and selling cheeky, spooky-tangential stuff to tourists all day. Wm says I was running on adrenaline, which may well be true. Because I didn’t *really* have that kind of energy or stamina. But I did it anyway. Welcome back to the world! 

Not that it was a bad thing. It was a good thing. Despite it being hard, I actually really like my crazy Octobers selling gewgaws en plein air. It’s invigorating, in its way. And compared to the rest of the year with Keep Salem Odd’s current business model, it’s very lucrative. 

The first couple weeks I was still very much in recovering from chemo and radiation mode… exhausted, basically. Luckily, I had time to rest on weekdays when I wasn’t working on making things or other admin. The last bunch of market days I came down with what seemed like a cold, but I think it’s actually not, rather an immune system thing with symptoms like a cold, but I have to talk to my allergist and get back to you on that one. Or not. Do you ongoingly really want to hear about all my health blah blah blah? I mean cancer updates are one thing but…

Apparently GenX are the generation of ellipses… I’m so on board with that.

And apparently this is misinterpreted by the younger generations. But they have weird hangups with punctuation and secret meanings. I live in fear that I’m going to unknowingly use an emoji that means something horribly untoward in some professional-esque context someday. Luckily, I rarely use emojis. Much more likely to append an :) or :(. Also a GenX thing, I expect. Since we grew up in a text-only world. Thank the heavens. 

But getting back to the topic of health, the official cancer update is that there really isn’t an update until December. I met with both my radiation oncologist and hematological oncologist (the chemo doc) recently and they both said I seem to be good. But this was based on just a chat and some bloodwork. (I am anemic, but apparently iron deficiency is a good sign because it means the radiation and drugs killing “bad” cells are also zapping iron, which means they are working). (But it would explain some of the exhaustion.) (Also, it’s very Victorian and deserves a fainting couch). It will be December when I get a PET scan which can actually visualize cancer cells and the tumor and such like. So, nothing terribly official till then. Though, anecdotally, I do feel better today than I did a month ago, so there’s that. 

Wanna hear more health stuff? Unrelated to cancer? I would think no, but then I realize that while I was trying to rest and occupy myself with nothing taxing to the brain, I watched a stupid number of medical-mystery-type videos on YouTube. Voyeurism. I mean, scientific curiosity! “This Farmer Excised His Own Melanoma, What Happened Next?”, “This Teen Rubbed a Whole Tube of BenGay between His Legs, What Happened Next?”, “This TikToker Ate Entire Gallon of Pickles in One Sitting, What Happened to Her Brain?”. Yeah. nothing that exciting, though the pickles looked really good.

Anyway, you may or not know that I have Ehlers-Danlos Syndrome. Actually, you probably don’t know that, since I’ve only told about 5 people, one of whom was my bookkeeper, who also has it. Now, if you’ve heard of EDS, it’s probably because it’s become a TikTok trend (I guess). It seems it’s a fashionable diagnosis. I’d say that’s kooky and makes no sense, but I do kind of understand where it comes from. First, watching medical stuff on social media, is, as aforementioned, kind of a sick fascination. Voyeurism, glad-its-not-me-ism, human interest, whatever. And add the addicting nature of videos in social media format, especially TikTok, and I can see going down all kind of hypochondriacal rabbit holes, self-diagnosing as a hobby. Or an outlet of anxiety or provoker of anxiety. And the thing with EDS is, it has a LOT of possible symptoms, some of which are very common. It also has a readily google-able set of clinical diagnostic criteria which are fairly easy to find loopholes in, if you’re not actually a trained clinician and/or are going at it trying to find yourself a condition to make you special or to get attention, or whatever the psychological motivation is in this context.

But I’ve had it since before it was cool, and I actually really have it. I mean, unfortunately, since it sucks. Without going into too much detail, EDS is actually a group of closely related hereditary connective tissue disorders. There are, I think, 13 variants, each of which is known to stem from specific genetic mutations, except for the most common version, for which the gene or genes have not yet been identified — this exacerbates the diagnostic kerfuffle. Here is an incomplete list of symptoms from Weill Cornell: 

• Abnormal wound healing

• Arthritis

• Back pain and degenerative disc disease

• Cardiovascular abnormalities

• Chronic fatigue

• Congenital clubfoot

• Cervicocranial instability

• Double-jointedness

• Easy scarring and poor wound healing

• Fragile arteries, prone to rupture

• Frequent injuries (related to unstable joints)

• Increased joint mobility, joints popping

• Joint dislocation

• Joint hypermobility that leads to frequent dislocations and partial dislocations

• Joint pain (“arthralgia”)

• Migraines

• Muscle pain (“myalgia”)

• Musculoskeletal pain that is chronic and debilitating

• Neurologic deficits (“myelopathy”)

• Numbness

• Osteopenia (low bone density)

• Pins-and-needles feeling

• Spondylosis (degeneration in spine)

• Unusual skin: very soft and velvety; fragile, bruises easily; stretchy (“hyperelastic”)

• Vision problems: sclera (the white of the eye) fragility, unusually small corneas

Of course, not everyone has all of these, but it gives you an idea. A pretty common thing, and what seems to affect me the most, is that you’re extra stretchy (hypermobile) — like my fingers, knees, and elbows bend backwards and various other freakishnesses. Though this seems kind of cool, as you age it becomes a liability, in that your stretchy ligaments don’t hold your bones in place that well, and they can come out of their joints fully or partially quite easily. Because of this, your muscles go crazy adapting and trying to hold them in by living in a state of constant contraction, or spasm. And this freakin’ hurts. 

I’ve been dealing with this and a lot of the other symptoms, since I was a kid — though it’s gotten a lot worse since sometime in my 40s. Unfortunately, like many other people who legitimately have EDS, I spent years going to a zillion different doctors and being told I did not have a problem, or that it was anxiety, or that it was in my head. Because they couldn’t see anything on a conventional X-Ray. 

Also because, with the way healthcare is structured, they can’t look at more than one part at a time. For example, I have had pretty severe tendinitis in my achilles tendons off and on for decades. I would go to an orthopedist who specialized in ankles and say, “Both of my achilles tendons are killing me, I can barely walk. But I think it’s part of a larger problem. I habitually stand with my knees hyperextended and my hips hurt a lot, and I think I partially dislocated one at one point. My back also hurts, and my shoulders, so maybe it’s postural?”

And, inevitably they’d respond, “It’s unusual and unlikely to injure both achilles tendons at once. And I can’t really talk to you about your hips or knees or back, I’m an ankle doctor. Let’s X-ray your ankles. Oh, they’re fine, go to PT.”

And then I’d go to PT and it wouldn’t help because they were treating me like a person with normal collagen (connective tissue). I think I went to PT, literally a dozen or more times with different practitioners for different (and the same) “injuries” over the past 20 years. Hips, wrists, elbows, shoulders, achilles, hands. Never mind the ones I went to when I was younger who told me to just stand up straight and would fix my TMJ. Hmf. 

I’ve also been to a physiatrist who “broke up” some of my achilles tendon knots with an ultrasound-guided large needle (didn’t help) and a pain doctor who gave me various shots in the butt and back (didn’t help) and was convinced I was lying that it didn’t help because “it always helps”.  A few chiropractors, half-dozen orthopedists, I don’t even remember who else at this point.

So, as you might imagine, when my GP finally said, “OMG, I think you have a connective tissue disorder!”, instead of sending me to another PT, it was a revelation. I always thought I was just a particularly broken and injury-prone person who was weirdly strong in some muscles and weirdly weak in others and had an oddly wide range of motion in some joints. Once she informed me that such a thing even existed, I read about it for about a year, feeling like I finally had an answer, and then I finally saw a specialist geneticist who diagnosed me. 

Problem is, it’s chronic and there’s no “cure” and not much treatment. (But I’m also super lucky, that despite my whinging, I actually have a relatively mild case, and do not have one of the really bad genetic mutations that makes your heart collapse, etc.). The gold standard, such as it is, for feeling better is, you guessed it, PT! But there’s a very particular protocol that apparently helps EDS people, and it’s quite different than the usual techniques. So I’m pursuing that. And compression sox. And Tylenol. 

Maybe this is super boring to read about. Sorry. I think it’s interesting not so much in a poor me, my everything hurts kinda way (though it does), but as a glimpse into how our medical system can really fail and how it could do a lot better. An outcry for holistic care. I know doctors operate on protocols and checklists and this is good. But what if they don’t know about the protocol for a condition because it is rare or has been described only since they finished med school? EDS was considered very rare until recently, because it was not well-known and  likely seriously under-diagnosed as a result. (And, if you’re being cynical, because it presents more in women and historically doctors like to brush off women’s pain as psychosomatic, etc. etc.) Dr Ehlers and Dr Danlos were talking about it 1901 and 1908, respectively, and PubMed tells me that Hippocrates described it in 400 BC, so not new. Some doctors are definitely starting to cotton on, maybe we have TikTok to thank (jk). 

OK, I still feel weird talking about my health on the internet. 

Have you heard the new Cure record? It had me almost in tears walking around listening on my walkman (iPhone) today. Go the Cure! They’re so wholesome. I’m such an elder goth.

I’m giving a first listen to the new The Sheila Divine record right now. I didn’t even know this was coming out. It’s pretty different than past records — maybe this is part of Aaron channeling all his creative output into this band instead of having various side projects. I like it so far. 

Still prodding along with “background” reading for my book research (it’s about the independent business community in Salem MA). I won’t say I’ve gone down a rabbit hole exactly, but I’ve been reading a lot of macroeconomics books and am finding them weirdly fascinating. I mean, weird, as in unexpected for me to be enjoying. Economics is such an  amalgam of the social, philosophical, mathematical, and political — very interesting lens onto many topics.

It’s time for me to start planning and doing interviews with local business owners though and getting into the micro, hyper-local level. Beyond the consistent level of extroversion required on my part, the trick will be to keep this interviewing process (and what businesses to include) drama-free. Like all small communities, this one can get cliquey, but I refuse to encourage or promulgate that. I hate drama-gossip-bs. It may take some magnanimity to defuse though, I suspect. I want to say “a rising tide lifts all boats” and for it to mean that we do better helping each other than bickering or casting aspersions — but I just learned the other day that that phrase has a rather different meaning in economics, one that I do not intend. But I do like ship metaphors, nonetheless. 

Oh yeah, and it’s Election Day. But it’s only 3:15pm, so there’s nothing to say about that yet. Besides, what is there to say at this point. Hope you’re doing ok and not so full of anxiety that you’re looking for new diseases to have on TikTok. Hot tea helps. 

Bless me father blah blah blah, it’s been too long since my last confession. Yeah, extenuating circumstances. Let’s start with the health update. Faithful readers of whatever this is will know that I finished my treatment in mid-September. My doctors told me I would be tired and not feel well and it would take some time to recover. For whatever reason, I did not believe them. Probably because I was still enjoying the benefits of steroids at the time. 

But ow-y zow-y, they were right. The three weeks following finishing treatment I was an incontrovertibly torpid. I had to pretty much sleep (or try to) constantly and my muscles had none of that stuff in them that makes them go. And I was just, well, generally unwell. This started to get better last week sometime, I think, and now I feel, well, not normal, but better. Still got some shit going on, but, argh, I’m sick of talking about my health. 

Let’s talk about something interesting instead. Did you know that the Dutch have bred enormous cattle to replace the aurochs in the ecosystem? (The bulls can be about 6 feet tall at the withers.) They are releasing a herd of them in the Scottish Highlands imminently. Aurochs went extinct in 1627, and not having a super-herbivore around has messed up the balance of the ecology in various ways. (I’m not sure they’re really called super-herbivores, I might have just made that up, but I like it). These new cattle are called Tauros and they were created by selective back-breeding of existing cattle types, not by some kind of Jurassic Park nonsense. They have them in a few places in Europe apparently, as well as, confusingly, an earlier variation called the Taurus. When can we get herbivorous megafauna cattle around here?

Though, at the moment, at least on the weekends, there would be no room for megafauna, because, it’s October in Salem! (That was a cheesy segue). They’re estimating 1.4 million human (non-cattle) tourists this year, I think. Something like that. Unlike many Salem residents who grumble about this assault on our space and municipal services, I get right into the thick of it, vending downtown in my stripey Keep Salem Odd tent. I’ve done 5 dates so far, with 5 to go. So far, so good, though you’d be surprised what sells, what tourists want to buy. It’s an interesting product-market fit challenge, to say the least. 

Yes, it’s a somewhat crazy undertaking when I’m supposed to be resting (or whatever) but, you know, you’ve got to do some invigorating stuff while you can (13-hour days standing outside talking to tourists!) to keep you lively! 

Other than that, work continues apace on my Salem Indie Business book project. I’m still doing a lot of background reading and research and thinking about structures. I know you’re all dying to know what my latest thoughts on note taking methodologies are, and I have to say, it’s going to be a little chaotic-sounding, and probably it isn’t the last iteration, but at the moment, I’m mostly still taking notes in the Apple Notes app. But THEN, I’m granulizing out the notes onto separate virtual index cards in a program called Heptabase, that allows you to arrange them into mindmap/whiteboard type arrangements. It has some other cool features too, but this kind of visualization is helpful for me at this stage. I really didn’t want to involve another app in the process, but I read a lot of the (weirdly bombastic) blog of Heptabase’s creator and watched some of his (not-at-all bombastic) videos and he kind of convinced me. 

I really want to call it Heptarchy though, as that is a word I quite like. And a period of English history I quite like. (Apparently when Americans say “quite” they mean “very” and it has a positive tint, but when British people say it they mean a far less enthusiastic “fairly”. At least that’s what I read in an article the other day.) Although, it’s really an old, somewhat outdated conceptualization, that there were seven distinct kingdoms in the early Anglo-Saxon period. There were more, and there was a lot more fluidity than a set Heptarchy would imply. I do, however, have a very pleasing early 19th century (or is it late 18th? I forget) “infographic” of the supposed heptarchy hanging on the wall above the stairs, where it’s rather awkward to stop and study it as one must. Here is Otterley studying it. 

Back to research methodology. One thing I find very challenging is that I like to listen to books on audio while I’m doing other things, like driving or making arts/crafts, and it is very difficult to make notes from them. At the moment, I’m just creating bookmarks and trying to come back to those at the end of listening and remember what I was thinking about noting down. If anyone has any better methods…

 All week I’ve been thinking of clever topics to write about in this here blog-thing, but, sadly, I did not take notes on what they were, so I now am left dumbstruck. 

Thank you for your consideration in this matter. 

Hi friends. This is where it starts getting different. I only have so much cancer talk to talk about, so we’re going to veer off into… well, everything else? It’s an experiment. You don’t have to stick around if it doesn’t work for you. 

But first, some cancer talk! I finished my official treatment in the hospital last week, as I mentioned last time. I’ve since come across a whole thread on a support group of people who felt between ambivalent to mortified about the whole bell-ringing thing, which makes me feel in better company. To me, it seemed there were all these “fun” cancer people who wore the t-shirt to the concert and then got super-excited about ringing the ding-dong bell. And by “the t-shirt” I mean that not just metaphorically but also that there seem to be a lot of people, well, women, who wear these “cancer warrior” type t-shirts to chemo — there’s an endless variety in said genre, but with that  warrior/fuck cancer  kind of sentiment. Nothing in me has any urge to own, let alone wear, a cancer t-shirt, and would be embarrassed and perplexed and made to feel extremely awkward if one came into my life by some means. In the same way that I have to urge to dance to “Cel-e-braaate good times come on” or even Earth Wind and Fire at weddings — or any of those jolly songs, anywhere, really. That’s the kind of fun I totally don’t get. Ok, maybe I get it, intellectually, for other people, but it is the kind of fun I do not feel. I don’t want to do the hokey-pokey and turn myself around. And wearing a cancer warrior t-shirt and ringing the bell seems like the oncological equivalent. 

I know people get comfort or inspiration from the notion of being a warrior, of fighting or maybe “owning it” and all that, but those metaphors rub me the wrong way to a degree. Maybe it’s because I was told from almost the beginning that my disease would be treated with curative intent, it felt/feels like more of a process than a war. But generally, I just don’t like those bellicose tropes, for this or other topics. Love not war, man. 

That said, I did tell my surgeon that I thought Tandem and Ovoid would be a very good post-rock band name and she should really consider starting one. See, I’m fun.

Also, I’m ok with the fact that the chemo nurses all seem to have a full wardrobe of cancer t-shirts to wear with their scrub outfits. I mean, if there’s a time and a place, there you go. I also suspect they get them as swag all the time from whatever swag-dispensing events chemo nurses attend, so why not wear them to work — where they may well end up covered in blood, vomit, toxic drug cocktails, or other things you’d only want to get on your work clothes. Actually, they wear awkward protective gear over their cancer t-shirts when dealing with the toxic drug cocktails, so don’t worry.

I’m not some kind of pedantic Taylorism type or anything, but I really couldn’t help but notice lots of the little things that made the jobs of the nurses and other health care workers just that little bit more annoying or cumbersome, and certainly the disposable gowns and PPE they needed to put on for prepping the chemo drugs was one of them. They never had them secured — presumably because the ties were in the back and hard to self-secure, and because it hardly seemed worth it for the few minutes of use. Lots of other little niggles like this too, with equipment and procedures… I was always asking about this stuff, and at least being empathetic about it if not able to offer any solutions. Everyone hates the little things that are annoying in their jobs, especially when they could be made better by designers or who ever works on the user-experience aspect of, for example, chemo nurse PPE. 

By a similar token, however, I have to say I was very impressed and reassured by the procedures that the nurses, doctors, and other staff went through on the regular. First, that these systems were in place and second that they were scrupulous about it. Checklists, double checks, triple checks, not cutting off the incorrect leg. I kept wanting to talk about Atul Gawande and The Checklist Manifesto — but restrained myself, because it is highly possible that no one else does. 

I was going to give an update though, way back there, after the third or so sentence at the top. But I digressed. Update: I’ve been really exhausted for the past week. Physically mostly, but also mentally. The latter manifesting itself in an inability to think about/deal with even the littlest things (so sorry if it took me several days to text you back… I just… couldn’t think). 

The physical part is completely to be expected. The 5 internal radiation blasts I’ve had over the past few weeks are working their magical violent destruction whirlwind in there and it’s not, you know, what the body expects. 

But the body, mine anyway, is really freakin’ stubborn about resting. I don’t really know how. I kept asking people how to do it. Even reddit couldn’t tell me. Like, literally, what do you do? Stay in bed? Sit in a chair? Read books? Stare into space? I was very confused. I hate the muddlement that often comes of a whole day in the house not interacting with the world, even in superficial ways. (This is different than not liking being alone — I like being alone quite a bit. This is more of an unsettling sense of disconnectedness that can come when you’re sick or nap all day or are generally out of it). 

Anyway, trying to rest really confused me for a few days there. Very grumpy. Yesterday and today I’m feeling a bit more energetic, and trying a new plan of a combo of doing stuff, napping and consuming caffeine to see if that works for a bit. But yeah, if you know how to rest and can explain it to me like I’m 5, feel free. 

What set me off being overly exhausted — maybe — was that I did a market last Saturday and it was, to be honest, a frustrating one. Interesting event put on by cool people for a good cause, but the vendor part, at least where I chose to have my booth, just wasn’t conducive to a lot of sales on that particular weekend in that particular setting. Salem was in a transition moment last weekend in the tourist cycle. It wasn’t quite right for my more touristy stuff, but there weren’t a lot of locals shopping either. It was a small part of a bigger market, first time doing it, and that is how I learn. I mean, I broke even and made a small profit, but it was a slow day. The vibe can get you down when you’re dealing with non-shoppers all day. Wish I could think of a better word than “vibe” for that sentence, but I can’t at the moment, sorry. Anyway it all put me in a bit of a bad mood, but more, it was probably too soon for me to do a market and I ended up being very exhausted for most of the week after that. 

This blog post… let’s talk about me! Let’s talk about my health! It feels very egotistical.  

But Seth Godin says to blog every day. Just ship it. Get it out there, keep up the practice. Remember him? I just read his latest book The Practice. It’s kind of odd that I read it because I’d pretty much dismissed him years ago — chiefly because his books had become increasingly obvious and excessively reiterative. And also because I designed a bunch of posters and promo materials for one of his talks for a client and I was at said talk, talking to him and mentioned that I did all the design for the event to promote him and he was really quite dismissive and grumpy and I felt it was rather hypocritical for Mr Get-Your-Creative-Work-Out-There guy. Though, really we all have bad days. I thought I was done with him at that point. However, I grabbed his latest book because it was there, in the dewey decimal system at the library next to something I was looking for, and gave it a read and actually quite liked it. Very much in the same vein as Stephen Pressfield’s much-lauded The War of Art, but possibly even simpler. A nice little inspirational treatise on doing stuff. But not in a bro-y way. But don’t get me started on bros and their yucky way of thinking about “self-improvement” and productivity. At least not right now. 

In related news, I’ve been unproductively fretting over how best to organize my notes and research for the book I’m working on. Let me drag you into the weeds with me! There’s part of me that really wants to use actual notecards, because that’s how I was taught to do research in grade school, and because analog bits of paper are sexy. This led me down a rabbit hole of learning about zettlekasten, or the “slip box” — a system of keeping and cross-referencing everything of interest you come across on notecards made famous by German sociologist Niklas Luhmann. People get really into this and then go down tangential rabbit holes about how to optimize it, and of course how to do it digitally or why you shouldn’t do it digitally. Then there’s overlap with the Second Brain people, and lots of talk of Notion and Obsidian and, more dogmatically, future-proof .txt files in punctiliously named or tagged folders and so forth. People spend a lot of time jockeying information around on the premise that they may or may not need it someday. They tout the benefits of finding the connections, and I can see that that would be useful and pleasing. And I get that writing things out longhand has benefit for comprehension and memory. But also, information management can become a full-time gig if you’re not careful. I need to actually do something with my information, that’s the point. 

So, much as it was interesting to learn about the modern version of zettlekasten, I don’t think I’ll be doing that per se, especially not in analog form. But three takeaways from that tangent that seem helpful are: to include cross-referencing links in notes when possible so that information can be organized into different places depending on where it fits better; to not bother organizing notes while in progress but let search tools do the work when it’s time to structure; and to rewrite/summarize all ideas from other sources in your own words right up front unless planning to include direct, attributed quotes. No cut and paste.

As an aside, although Lehmann is lauded and studied for this whole zettlekasten thing, people/scholars have ben employing similar ideas for centuries. Commonplace books and all that. And beyond all the Renaissance and Enlightenment type dudes (and presumably dudettes who went uncelebrated), the whole writing of the first Oxford English Dictionary was nothing if not a giant box of slips of paper. For decades. (Highly recommend The Professor and the Madman if that sounds exciting to you, which, why wouldn’t it? Come on, the OED!) (There is also a film, but it stars Mel Gibson as the Scottish protagonist, enough said?).

Where was I? Oh yes, so I have been keeping notes in Apple notes, which has the advantage of being relatively omnipresent in my “digital life”, simple, and backed up. I haven’t been rigorous about one-idea-per-note by any means. Many have long bullet lists of stuff. I think maybe I’ll continue with that and then transfer everything in the idea-sized chunks to the digital notecards in Scrivener when the time comes. Writers of researched non-fiction, what do you think? What do you do? 

I guess that’s it for today. Cancer and notecards. Never say I didn’t give you anything. 

[Photo at top is Harvard Widener Library in 1915 from the LOC]

Bonus items

• Alternative to Earth Wind and Fire for a song about September you don’t have to dance to

• Fabulous new record out today from the amazing young people of Circus Trees

• When I was linking things above, I discovered that Joan Rivers had an archive of over a million 3x5 index cards of Joan Rivers jokes.

Sleep by Christina Bothwell (part of Conjuring the Spirit World at PEM)

The second of this week, in fact. I won't regale you again with the gruesome details of what's involved. Went spiffingly though and I was actually able to leave before 3, which was nice. I also rang a bell. it’s a thing when you finish your cancer treatment (usually chemo). As part of the weirdness of the whole experience there was a big group of nurses and other workers all gathered round with bells when I came out of the bathroom. Don’t think I’ll add that to my repertoire of regular dramatic entrances, but once was nice.

Radiation machine thing at Beth Israel Hospital

Somehow, despite having woken up at 4.30 to get to the hospital by 6, I wasn’t terribly tired when I got home and managed to go out in the evening to a preview of the PEM’s new Conjuring the Spirit World exhibit. They really quite outdid themselves with this… it’s very good, and much more extensive than I was expecting. And, well, unusual. Wonderfully ‘niche’. I gather it will travel after its run here in Salem, so do catch it if you can. I’ll definitely be back for repeat viewings during its tenure. 

Lots of interesting locals in attendance as well (this event was for “influencers”, don’t as how I got an invite!) and I ended up going out for dinner with some fellow indie entrepreneurs women of great charm at the cozy Nathaniel’s in the Hawthorne Hotel. Not folks I knew terribly well but it was so nice to sit down with civilized people in a civilized place and have some good conversations and food and drink. Highly recommend, would do again!

Wandered back home around 9 and waited for Wm to get home — he’d actually gone back into Somerville to see music, in yet a second example of superhuman having-woken-up-at-4.30 strength. I was doing research and watching YT videos about software (gearing up to get back into Scrivener for my book project) and puttering. Wm went to bed around 11.30 and it wasn’t until about 2am that I finally day looked at my treatment notes from earlier that day and discovered that they had, in fact, given me steroids along with all my fentanyl and synthetic morphine and all the nice pain relief — hence the ridiculous energy. Well! I managed an hour or two of sleep in between fits of wanting to jump up and do crafts at 4.30 in the morning, and am up again early. Expecting to crash at some point. Though hopefully more along the lines of strategic napping followed by caffeine consumption, as I do have stuff I need to get done today. And am going to a movie/discussion event tonight for which I would like to be conscious. 

I have stuff to get done today because, somewhere in my brain it seemed like an excellent idea to plan to vend at a music festival craft show tomorrow rather then rest on my resting laurels post finishing treatment. It’s the Moon over Salem festival, put on by Moon Booking and features a gazillion bands all over town, as well as vendors in Ye Olde Town Hall (that’s where I’ll be). It’s actually a benefit to help teach the youth how to rock — put on indie rock shows, etc. Cool, right?

Hopefully everything I varnished in the basement the day before yesterday is ready to go. I have all kinds of new products for this event, including a new series of illustrations I did of animals in stripey tights. I have to figure out everything I’m bringing and the set up soon… might need some strategic caffeine for that! I just have a small space, must try not go nuts. Must also remember to go pick stuff up from the screen printer. 

Perhaps Sunday I will rest. I mean, if this weekend is like last, I will have to. I was zonked. And that’s the thing, it’s supposed to take at least several weeks to recover from the exhausting and other effects of the 5 internal radiation sessions/surgery things I’ve just gone through (and the chemo and external radiation). I have to keep remembering that I might not be up for everything, anything, even. Not easy to get one’s over-ambitious head around. 

And of course, it blends in with this whole strange place I’m in where my job has been to go to cancer treatments all summer. Since early June. It’s been what I do. So, now what do I do? It’s the first of what’s next. With luck the first day of a whole new, non-cancerous chapter. Though I won’t really know more about that for a few months. 

I have plans, for my work, but there are a lot of unknowns. I’m reformulating how I make a living, starting now. Well, starting to gear up now… I won’t know if I’m 100% until I get there, I guess. There is a lot of uncertainty and experimentation on the docket. But I maintain that dealing with that kind of stuff is part of being an older, more self-actualized Annie, so I guess I will be putting it to the test. 

I was going to go into some of said plans here, but I think I’ll hold off. Still brewing, percolating. I probably need to make some diagrams. 

I don’t think I was very much of a “victim-y” patient. More matter-of-fact, get-it-done, chin-up. Stubborn about resting. And I was thinking how I was able to become very physical non-self conscious as a a highly practical protective mechanism (people, I think, get stressed just thinking about all the invasive stuff I had to get done, but I really just didn’t even think about it or fret…). Nonetheless it is a mind switch to be not an active patient now. Go back to whatever a more private ownership of my physical body looks like, and my time and certain decisions which were obviated for some months there. I’m not totally intimidated, but it’s different. I feel different too, though, maybe capable of being more decisive. Definitely appreciating the the more simplified structures and systems I’ve been carving out all summer out of necessity and having time to do so. 

So, yes, the first day of something. Watch this space. 

[logistical note: I’ve switched this annielog, as you see, over to Substack so that one can subscribe to it or read it online, rather than me doing weird things with facebook and a randome wordpress blog. Don’t feel you have to subscribe, especially since the content will be changing pretty diametrically over coming months and weeks, but if you’d like to, it’s here. Also, it’s still best to contact me via email if as I’m not very consistant with social media. Thx!]

30 August 2024

Time for a health update, methinks! Not to much dilly-dallying with other topics today, just the blood and guts stuff. Still trying to figure out my, you know, blog strategy.  

Let’s just say it helps that I am a very curious person. Because some of the new things I’ve gotten to learn about and experience vis-a-vis cancer treatments have been, interesting to say the least. You wanna put what, where? Oh. Interesting! 

Officially, my treatments end on 12 Sept, if all goes to plan, so I’m in the last stretch. Is final stretch a horse-racing expression? Not sure, but for the record, I do not condone horse-racing. Just to be clear. At this juncture, I have 3 more internal radiation treatment-surgery thingies, 1 more chemo, and 3 more external beam radiation treatments. 

The external beam is what I described last time, but here’s a review for the keen. You fill your bladder (so many adventures with this!) and empty your other storage tank in the same area, then just pop up on this slab table thing with your legs in a cozy mold of your own legs to keep you still — and the weirdly comfortable rectangular pillow! — and then the table moves around and a huge machine moves around you and you get zapped by photons through your body. You don’t feel anything. It’s quite chill really. About 3 pop-songs later, some eager young technicians fetch you and off to the pee-room you sprint. It’s just the hour drive each way that can be a bit much… but to be honest it’s bothered me a lot less than I thought it would. As long as there isn’t hideous traffic, I’ve been fine merrily listening to my audiobooks and thinking. I’ll be doing that today. Then 2 more next week.

The chemo regimen is intended as a “booster” to the radiation. Though, in a way that’s the exact wrong word, because it works by weakening the cancer cells, or “de-boosting” them, to coin a phrase. The drug weakens the cancer cells, making them more susceptible to the radiation zapping. The drug I’m on for this “chemoradiation” is called Cisplatin and it has had fewer side-effects issues for me than the 2 drug regimen I was on the first half of the summer — though it’s unpredictable and I try to do a lot of prophylactic measures to avoid unpleasantness. I really need to learn to spell prophylactic without looking it up, as it is quite a useful word for all sorts of things. I get this drug through IV with some other bonus stuff like magnesium and side-effects-counter-medicines and two giganto bags of IV fluids. So you know, more pee. I am very well-hydrated. (I actually think this is a big factor in feeling so well as I have done.)

Then there’s the internal radiation therapy. This is the “fun” one. The procedure is called brachytherapy and involves the implantation of sealed metal capsules containing Iridium-192 (in my case). These capsules are placed directly on my tumor sites internally through a surgical procedure under full anesthesia. They kind of sew them in there, I gather. Stitches and tape. I did not request a picture. After the surgery, they spin me through a CT Scan to make sure everything looks right, then I get to lay still for several hours with all that stuff in there, while the radiation oncology surgeon, a physicist, and a dosimetrist make a plan. I feel like there’s some “what if a dosimetrist a physicist… walk into a bar…” joke but I’ll leave it to you to come up with your own. Eventually, I go into a radiation suite (where they have plastered Monet’s Waterlillies all over the place leading me to wonder what Monet would have made of it) and they literally plug in the nuclear pods to a radiation source machine and turn it on. The actually being irradiated part takes less than 10 minutes. Then they come in and remove all the stuff and snip and untape and voilà, I am free to go back into that room where I hung out for all those hours until I convince them I am a hoppy bunny and am ready to hop on home. 

Again, this sounded like it was going to be a lot worse than it actually is. I think that the care the team take (and there are a lot of people involved) to assure every stage is comfortable is a boon. It’s the little things in these situations that can make things a lot worse and you wouldn’t even know what to ask for to make it better. Also, again, being curious is helpful. Much more useful than being anxious, which, to my surprise, I’ve really managed not to be. Go me.

Oh, the best part is that the surgery for this is called Tandem and Ovoid Placement which I think is a A+ post-rock band name. 

But also reminds me of the 1939 World’s Fair a little. 

The thing with these surgery days is that I have to wake up at 4:30am to get to the hospital which is, a bit off-putting. It’s a very long day, but hey, I get to be anesthetized during some off it. 

With this type of cancer and treatment, the radiation keeps working to shrink the offending cells for some months after the active zapping and drugging is done, so they don’t actually do any official diagnostic scans as active treatment ends. However, in prep for the internal radiation treatments, I did have an MRI last week and it showed good progress in my tumor and cancerous cells having shrunk a good deal. Not the type of scan where they can measure exactly, but my doctor was very pleased with the progress, and so am I. I asked her how it looked on visual examination yesterday (when I started, there was visible tumor sticking out) and she said it looked “obliterated” which sounded right jolly to me. 

Tandem and Ovoid’s first single “Obliterated inside”.

The post More of What I Did on My Summer Vacation first appeared on Annielog Non-Analog Annie Log.

20 August 2024

My estimable graphomaniac friend Rick Webb says that everyone should write a 1000+ word newsletter every day instead of using modern social media in the usual ways, and I think that is probably correct. Though I am not the best with repeating habits. And that is somewhat on purpose. No, I do not want to read James Clear’s book even though apparently it changed everyone’s lives. (I did see him talk once about 10 years ago at a tiny conference in Norfolk VA, of all places and he was very good, but he wasn’t talking about habit-formation).

So, my health, yeah, it’s a popular topic these days. Here’s the update, such as it is. I’m feeling well today. I had chemo and radiation yesterday, and it went smoothly. I have radiation again today (and every day!). Last week I had to skip chemo for the first time because my neutrophil levels were too low. Apparently, neutrophils are to do with white blood cells, though I’m convinced it sounds like a type of small rabbit-like creature of some sort. This also meant my immunity was low last week, so I had to forego a whole bunch of fun-sounding, crowd-containing events, which was not jollificating, but par for the course, I expect. But my handy graph shows my neutrophils benefitted from the week’s rest and are now solidly back in the green (normal) section, so go me.

Chemo means I get dosed up on steroids for a few days, which, call me a drug-addled delinquent, but I do enjoy this immensely. I feel like Old Annie, or should I say, Young Annie. Lots of energy, no sleeping, lots of ideas, getting lots done. It’s so pleasant after my long slow decline into energy-less constant napping. Only a few days of the week though. And my docs say not to take extra, as it messes with immunity. (And there are other short- and long-term side effects that suck too, so alas, I will obey.)

I went to a proto-board meeting for the Sisterhood of Salem last night and couldn’t shut my mouth, but (despite this) it was a great meeting. I’m very inspired about volunteering and being a part of this org and seeing where it goes and what it can do as becomes a nonprofit. It’s a networking, collaboration, mentoring, social, learning, support group for women indie biz owners in Salem (that sentence may change, pending finalizing the mission statement!). I’m all about indie biz in Salem, and evening out some of the damage caused by historical patriarchy through deeds not just winging is always good. Anyway, I was a motormouth at said meeting, which was kind of funny, for me. I usually just listen and take notes and come out with a couple nuggets at the end. Met some cool people too. I would link you to the website, but it doesn’t exist yet. And yes, I have volunteered to build it.

Oh yeah, cancer. So yup, external radiation every day this week and most days the next two weeks, except when I get to do other, more invasive, complicated treatments. I have 5 days which are for internal radiation — which is an all-day affair starting at 6am and involves some rather graphic placement of nuclear thingies and then getting hooked up to a machine that makes them go. And a lot of other procedures in between. And full anesthesia. This should be, interesting. Yes, maintain curiosity.

I have an MRI this Friday which is the first sort of diagnostic test of any kind I’ve had since I’ve started treatment. MRIs aren’t the highest res way to look at cancer (CT Scans tell you more) but it will give some info, I believe. And involves drinking metal and inserting rather a lot of goo in a place you’d rather not. I know you are jealous. Oh, and lying in a claustrophobic very loud tube. But I kind of like that part. It’s very nice industrial music.

Speaking of music, the Somergloom festival is happening in Davis Square this weekend, and I’m going to try to go on Saturday. There are lots of good bands, and you should go if Somerville is convenient. And you like that sort of thing. Gloom.

And speaking of localish music festival thingies, the Moon Over Salem music festival is happening in Salem in a couple weeks on September 14th, and it’s another worth checking out. There are a boatload of bands and a vendor market, at which I am vending (as Keep Salem Odd). This event is actually a benefit to help support local music and teach up-and-coming bands how to do indie shows and stuff. The Moon Booking people seem neat-o. Oh, and the vendor part is curated by The Salem Flea, another huge supporter of indie biz in Salem. Seems to be a theme in my brain here! And I haven’t even told you about my new book project yet. But that will wait, I think.

This is like a that complement sandwich way of writing where you couch the criticism within the nice bits… I keep coming back to trying to give a cancer update in between going off on this that and the other, but I think the final part of my thoughts on all of that are that I’m trying to keep in my vision of possible things that could happen, that things may not continue to go as smoothly as they have mostly been. Don’t get me wrong, I do feel positive, and again, that word, intensely grateful. But I don’t want to freak out if there are glitches. I could start to feel appreciably worse from the radiation in the next two weeks. It’s apparently very common with the cumulative effects. I’ve felt poorly some days, but not as badly as I’d been told about. I’ve also prophylactically a “low-residue” (i.e. no fiber, no spice, no acid, not much taste, sigh….) vegan diet and taking various stomach remedies, so I think that has mostly helped so far. Many many white foods. So weird and counterintuitive to my usual take on healthful eating. But I just keep telling myself it’s temporary and boy will I be glad to mow down some broccoli and legumes and things when I’m up to it. I’ve been largely missing out on our copious bounty of cukes and tomatoes from the garden this year and have FOMO about it, but again. Temporary.

And yes, the tempering the vision thing. What if my MRI shows not tumor shrinkage, or that it is worse or spread or some other unlikely yet possible scenario? I must put in my mind that these things could happen. Even my doctor said they likely won’t be the case, but being mentally ready seems important.

Obviously cancer and cancer treatment is largely physical, but when people say it is also hugely mental, they tell no lies. I’ve learned so much about myself. And neutrophils.

XOXO
Annie

PS: I don’t feel like writing custom CSS to create a proper caption for the featured image at the top of the post, so here’s a description for you: This is the external radiation machine I go in every day. That huge thing rotates around me while I lie on a table. It’s kind of like being a part of the projector at the planetarium. It makes some cool noises, but sometimes they also pipe in some mainstream bland 80s music like Tom Petty or (icky) ZZ Top. Even though none of the people who work in this department were glimmers in their parent’s eyes in the 80s. Also, there are flowers on the ceiling to look at if you keep your eyes open.

PPS: To everyone who has contributed to my GoFundMe, bought something on Keep Salem Odd, Zelle’d, or just reached out to say hi, THANK YOU A MILLION TIMES. I can’t even tell you how much this means to me. I haven’t cried over having cancer, but tears have come to my eyes several times because of people’s kindness. You are the best.

The post Good morning, live from cancerland first appeared on Annielog Non-Analog Annie Log.

This is awkward. I might not have seen or talked to you in a while, and in that case, you probably don’t know what’s up with me, since I, apparently, haven’t quite learned the skill of casual, conversational texting all that well, and putting non-breezy personal info on FB feels yucky to me. I’m a bit stumped on other forms of mass distribution at the moment. It’s not that I’m being secretive or particularly private or don’t want to tell you stuff and share, rather that I’m better at it in person. So, if I think you are on facebook, you’re probably reading this there. If I think you aren’t and I somehow have managed to not lose your email address, you might be seeing this as an email. At any rate, the whole thing, plus more, is at www.annielog.com, which is one of the-far-too-many domains I own.

The awkward thing? I have cancer. I was diagnosed in the late spring with a fast-growing form of cervical cancer that probably started getting real sometime mid-winter when I began having some ambiguous signs and symptoms and visiting various doctors looking for answers. 

First the bad news

What should you do with this information? Nothing, really. I just wanted the people in my life to know, since I’d want to know if you had news like that to tell me. You can stop reading there, if you like. 

If you want to know more, I’ll format the rest of this as an FAQ and stick it here — or maybe it’s not a FAQ but more just like a Socratic format, but without the passive-aggressive embedded learning objectives. Whatever, seems like fun to interview myself about cancer. I’ll try to post any relevant updates over on annielog.com if they come up or if people specifically request that I do such a thing. 

The Good and much more cheerful news

Exciting (to me at least) in its own belated, absurd way, I have just added a Rockets Burst From the Streetlamps merch page to my store at Keep Salem Odd. Why? It’s 20 years since our last record came out. It seemed like a good time for t-shirts! 

Please buy some tardy band merch to help make up for some show we probably played in 1998 where we didn’t get paid thus making me the poor person I am today.

Or, buy anything from Keep Salem Odd. Or tell people about it who might like what’s there. More stuff will be added pretty regularly for the rest of the year, as I focus on this as my prime project after health. It is my only income at the moment, so any thing helps. And it amuses me greatly when people buy my eccentric bits and bobs. 

State of the Annie FAQ / Self-interview

What’s your Dx, technically? 

Cervical adenocarcenoma Stage IIIC

What’s does that Dx mean?

It means there is a solid mass in the cervix with some involvement of adjoining lymph nodes but no spread to distant sites in the body. The staging for this cancer isn’t necessarily linear how-bad by numbers/letters, each has its own definition.

What’s the survival rate?

I’ve learned that that isn’t the correct question to ask, since apparently those stats tend to be out of date in terms of the latest treatments and are also biased by the fact that lots of people who are older or have co-morbidities die or also die within 5 years of having cancer. The better question is:

What is the goal of treatment?

The goal is curative for my treatment. Phew. My doctors think they can get rid of this thing.

How/why did you get this?

From a virus (HPV) that pretty much everyone has at some point. Usually your immune system is able to clear it by itself, and nothing bad ever happens. But once in a while, it gets feisty and starts messing with your cells and turns into cancer. I tested positive for high-risk strains of HPV for 3 years in a row with no suspicious cell changes, so it was on my radar and I was doing various tests as recommended, but this year it managed to start messing with me. 

Other than this little glitch (and having EDS, which I was diagnostic with 1 week before cancer — but that’s a whole other fish-kettle), I was/am pretty healthy at a systems level, so I’m glad I was able to start dealing with this from a reasonable baseline. 

Obligatory PSA: I was too old to get the HPV vaccine when it came out, but if you aren’t and are an appropriate candidate for it, you definitely should. Also, please do get your PAP and HPV tests on the regular if you have the relevant parts. And, like, all the other recommended screenings you should be doing. Go to the doctor prophylactically my friends, I want you here! 

Did you/will you have surgery?

Nope. At least it’s not in the plan at the moment. Although you’d think you’d want to just cut that shit right outta there, apparently that works less well than the treatment I’m getting for the type of cancer this is.

What treatment are you getting?

I started with what’s called Neo-adjuvent chemotherapy with Paxlitaxol and Carboplatin weekly for 6 weeks. This is an infusion of drugs I get at the hospital. This is a fairly new regimen (like past couple years) they’ve added to the treatment protocol after some very promising studies and results. From my understanding, it does some pre-killing and pre-shrinking of tumor and making it far more susceptible to the “real” treatment begins next. 

I just finished this neo-adjuvant stuff last week. 

I’ve  just started part two which is daily radiation treatment with weekly chemo with the drug Cisplatin. That goes for the next 5 weeks, outpatient. EVERY DAY. And toward the end I’ll also be getting some internal radiation treatments, which are more like day operations and kind of fascinatingly gruesome sounding. But I’ll learn more about that when it gets closer to the time.

Is that it?

Could be. That’s the plan at the moment, but I’ll have to see how it all works. There are other options if I need more treatment, from what I understand.

How was your first month and a half of chemo?

I have definitely done more agreeable things. For the most part, each week was a series of ups and downs of feeling good/ok to pretty dysfunctional with side effects. I was really grateful for the good days and tried to be a non-naughty girl and rest and take care of myself on the other days, though it’s quite hard when you’re incredibly stubborn. This is actually a good skill for me to learn, silver linings and all that. 

What will the next month and a half of treatment be like?

It’s just day two, so I don’t really know, but I’m assuming I’ll have a host of side effects, probably getting worse as the radiation accumulates in my system over the course of the treatment. But every body reacts differently to radiation and to the chemo drugs, so: unknown. They do have lots of drugs for the side effects and provide them liberally (and I can also take edibles etc.) I’m guessing I will have good and bad days in each weekly cycle again. I’m pretty sure driving an hour+ each way to treatments every day is going to wear me right the hell out. I’m not a seasoned commuter or super regular driver.

Where are you being treated?

It’s at Beth Israel Medical Center in the Longwood medical area in Boston. I was referred to BIDMC since my PCP is still in Somerville, and I’m glad I’m in that system. It’s a top 10 cancer center in the US I think. So, worth the drive.

How’s your brain with all this?

It’s complicated, of course, but I don’t think I’m sugar-coating it when I say I’m actually shocked at how well I’ve been handling things and how I’m not faking finding lo actually seen a lot of positive aspects in this pear-shaped world. I’ve spent most of my life trying to fix my brain (therapy, self work, drugs) and to stop catastrophizing, and I’m pretty proud of to 

I’m holding up in a crisis. Sure, there have been bad days and shitty thoughts and fear and uncertainty, but mostly I’m able to compartmentalize in a reasonably healthy way and not be too depressed or anxious. There has been some super shitty and frustrating brain fog at times, but I have to keep remembering that that’s just a sign I need to stop doing things and wait for it to pass. I mean, knock-on-wood, subject-to-change, but so far, so not-that-wretched. 

How do the logistics work, having your life totally disrupted?

Well, luckily my personal First Gentleman has been awesome. We’re living off his salary and retirement savings at the moment, which is not something we ever even thought we could do. And it’s not ideal, but at least it’s an option. It involves sacrifices but we’re making it work for now, as best we can. 

I’ve quit selling on eBay (which was a big portion of my regular income but proved way too stressful and difficult with time/deadlines/physical activity. I’m working with an estate sale company and doing a few private deals when I can to sell off my approximately 15,000-item inventory and to recoup relatively quickly a small portion of the money I would have made eventually in the regular trash racquet. Hopefully this will all be done by the end of September. I also stopped making content for my reselling YouTube channel you probably didn’t know I even had. It was a hard decision to quit both of these activities since I enjoyed them and was good at them, but it was necessary, and the more time passes and I analyze the decision in retrospect, the more I see a lot of positives and opportunities. 

I don’t have any design projects at the moment… well, one that’s small and non-deadline-driven. I may or may not pick up any others that come in depending on how I feel vs. the money situation. 

I am still working on my always-online/sometimes-pop-up shop Keep Salem Odd when I have the wherewithal to work. There’s tons to do, lots of things I hadn’t been able to get to with all my eBay work in the past. My online store needs some serious marketing and I’m working on that. I’m working on some collaborations with other business owners and developing a whole raft of new products and projects. I’m gearing up to do my crazy Haunted Happenings pop-up throughout October (aka Halloween with 1 million plus tourists in Salem). I won’t be that far out from treatment then and may well still feel bad, but I’m hoping very much to make it work, whether that’s with hiring help or cutting back days or whatever is called for at the time. 

Focusing on Keep Salem Odd is pretty much my work plan for the rest of the year (especially because September through December are my “high season”). In my head, there are some other things I may want to try, work-wise and I’ll see if I can experiment with them at some level in the coming months. I have no real set expectations except that I’ll be pivoting like a whirligig and figuring out what’s next.

But as Bill (and everyone else) keeps reminding me, my only job right now is to focus on my health. And I’m doing that, I swear. It’s just hard to turn off batty-productivity brain when you’re used to constantly scrabbling to earn a living on your own terms and have a 20 entrepreneurial ideas a day and all kinds of long-seated, money-work-ethic guilt issues that you’ve mostly worked through but…

Anyway, I’ve actually found some time to work on some creative and art stuff while I’m lying low and that has been so nice. 

How should I interact with you? It’s awkward.

Luckily, I’m all about awkward and it’s a lifestyle choice! You should see some of the weird things I’ve said to people lately, especially when they make me take the steroids! So, yeah, you can talk to me about the cancer thing if you want, you can totally not mention it if you want. No judgment from me! I don’t mind talking about it and answering questions but I also don’t mind not talking about it, since it’s kind of boring and yucky. It’s all good though. Just don’t try to sell me any magic cures that come from a pyramid scheme in Utah. That might actually piss me off, especially with ‘roid rage (which I totally don’t have).

Tell me about you. Tell me your views on the the hydrangeas this year, the Time Team dig at Sutton Hoo, making your own shoes, your favorite new post-rock band… all about your summer.

Is it a secret?
No. I mean, not everyone needs to know everything about my cervix, but certainly tell any mutual friends who this misses if you want. Not a secret. 

What about your hair!? (Hey, I’d want to know)

This is kind of interesting, actually. I’m doing this slightly freaky quasi-experimental protocol called “cold capping” where I literally freeze my head with specially made gel packs cooled in dry ice before, during, and after my chemotherapy treatment. The idea is that cryogenically dormant hair follicles don’t absorb the chemo chemicals that kill off cells. It’s a whole big undertaking (like putting a new weird ice hat on your head every 25 minutes for 8-10 hours on chemo day) and does not work for everyone, or doesn’t work well.

In the US , it’s poorly studied, not paid for by insurance, not aided by healthcare workers, and not particularly encouraged by doctors (neither discouraged… they just don’t find it relevant to their interests). In other countries, like the UK and Japan, it’s much more common and rightly seen as a mental-health-promoting aspect of a generally dehumanizing and possibly disfiguring (for some cancers) treatment process. Anyway, so far it has worked remarkably well for me and I still have my crazy hair. The chemo drug I’m on next is not known as a big hair-destroyer, so fingers crossed I shall remain relatively unbald. 

How can I help? (This actually is a frequently asked question, thank you)

You totally don’t need to do anything. I’m good. I have health insurance and food and a car and Bill and my mum and sister and other offers to help if I need it. If you want to talk, text, email or hang out, I would love that, but it doesn’t need to be anything special. I have a few “group” events I’m going to try to go to soon where I’m hoping to reconnect with lots of friends I haven’t seen in a while, too.

I will also be in Boston every week day for the next month plus, so I’m hoping to manage some coffee meetups and such. (Though one of my side effects is that coffee has no taste, WTF.) So yeah, TL:DR; on this one is: just say hi. That would be awesome. And don’t be sad if it takes me a little while to get back to you, I’m probably just sleeping. 

If you feel compelled to do something else, of course, I must admit humbly that financial-type support would definitely not be sneezed at. Luckily, my health insurance has thus-far covered almost everything, so no scary typical American-goes-bankrupt-with-medical-bills tale of woe (knock on wood, etc. etc.). But not working has certainly thrown a lot of challenges our way. First world problem stuff, and I’m SO not asking you for anything. Do not feel bad. If it is of interest, however, I have a Buy me a Coffee account I’ve been using for my YouTube channel. 

Also, and this is exciting (to me at least) in its own belated, absurd way, I have just added a Rockets Burst From the Streetlamps merch page to my store at Keep Salem Odd. Why? It’s 20 years since our last record came out. It seemed like a good time for t-shirts. You know? Please buy some tardy band merch to help support some show we probably played in 1998 where we didn’t get paid that made me the poor person I am today.

Or, buy anything from Keep Salem Odd. Or tell people about it who might like what’s there. More stuff will be added pretty regularly for the rest of the year, as I was saying, and this is my only income at the moment, so any thing helps. And it amuses me greatly when people buy my eccentric bits and bobs. 

THANK YOU for reading all this, if you got here. Sorry I didn’t tell you sooner or in person or more personally. Nothing personal. Just logistics and preoccupation. It’s been really bugging me though. Again, please don’t feel like you are doing anything wrong in not offering “to help”. I really am doing ok and am actually full of gratitude for everyone and everything I have already. But hopefully I’ll see you soon! 

XO

Annie

The post Good news bad news. first appeared on Annielog Non-Analog Annie Log.