Good news bad news.

Hi Friends.

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

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