Cancer log 208: Working in the waiting room

Cancer log 207: The nurses are vastly amused that I’m working in the waiting room, but honestly, if you schedule me for an 8 a.m. procedure and tell me I have to check in at 6 a.m., I have to assume I can squeeze at least an hour of work in here somewhere. That just makes sense, right?

I explained that I had a set of papers to get back that my students were anxiously waiting for, and I felt bad keeping them waiting any longer than needed. (I’d set an alarm to get up at 3:30 so I could finish the last four papers before leaving for the hospital, but I’m afraid when the alarm when off, I reset the alarm and went right back to sleep for another blessed hour.) The truth is, I probably would’ve been working regardless, but I do have a good reason this time.

The most recent nurse laughed and said, “At least you’re not under anesthesia yet.” She brought me a warm blanket — warm blankets from the nurses are one of the few lovely memories I have from my time in the chemo ward.

I’m also noticing the quality of the patient robes here — not only do they wrap all the way around in the back, so that when you’re walking down the hall, your ass isn’t hanging out for all to see (thank you!), but they’re in a sturdy fabric, not paper, and an attractive print that I would be happy to wear as everyday clothes. It’s funny, but it makes a difference, somehow.

Loyola is a good hospital, reasonably well funded, and it shows. I’m glad my insurance was willing to cover my treatment here — I’ve been treated at poorly funded hospitals in the past, and the doctors and staff do their best, but with inadequate resources, and the strain of that is evident.

I’ve been watching New Amsterdam, which is a new-ish feel-good medical drama about a hospital director who is constantly trying to buck the system on this kind of thing, and I wonder if it’s pure fantasy, or if any of the things he tries are based on real events and actions that were effective. The latest episode directly confronted the problems with African Americans and the widespread distrust of healthcare (post-Tuskegee, Henrietta Lacks, etc., as referenced in the previous excellent article I posted, about the face transplant). In that episode he ended up training barbershop staff to take blood pressures and prescribe hypertension medicine, under his supervision, which seems a little like a fantasy, but maybe not?

Our own library has started doing pop-ups into barbershops and laundromats, in an effort to reach underserved populations, which I’m really excited about — it was related to an idea I brought up on the campaign trail a few years ago, doing pop-ups in empty storefronts, and I love that they’ve transmuted my airy-fairy idea into something workable. I can’t wait to see how that develops, and if we actually do manage to reach a broader library patron population.

I do wonder what amenities they offer in fancier hospitals. Heated hotel-quality robes? A green smoothie upon awakening? Plush bunny slippers?

I’m okay with my cheerful yellow non-slip socks, though.

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Cancer Log 206: Considering co-pays and health

Cancer log 206: Tomorrow morning at 5:30 a.m. (gah) I go in for an exploratory surgery procedure. They’ll be doing a D&C in order to recover a sampling of the endometrium to hopefully determine the cause of abnormal uterine bleeding.

In theory, I’m in early menopause (post-chemo), according to my bloodwork, so they’re fretting because once in a great while, I still seem to have a period. Which is probably nothing, but in case it’s something, it’s better than they catch it early and deal with it. With people who have had cancer, they’re extra-careful with screening such things, which I generally approve of. I am all for an abundance of caution.

That said, the lady from the hospital who called me to get my co-pay in advance (without which, they won’t do the procedure, apparently), said that it would cost $8000 (with anesthesia, surgery itself, recovery, etc.). So I am glad that my HMO co-pay is only $250.

And yet I can’t say that I’m glad I have insurance, because I just went and checked, and as far as I can tell, the same procedure in Canada, including the use of fast-acting anesthesia, is $347. The paper I looked at seemed to think the procedure should cost about $1500 in the US, which made me think I had misheard the phone lady, but then a google search indicated the national average was in fact closer to $8000.

Now, the Canadian paper doesn’t take into account hospital overhead costs, which do need to be paid for, so fine, that’s some of the discrepancy. I do think we should compare apples to apples.

But it does cover all the direct costs for the surgeon, the anesthesiologist, the nurses, the medicines used in the procedure, etc. And $347 to $8000 is a massive jump. I’m super-curious whether Blue Cross / Blue Shield HMO actually pays that $8000, or whether that’s a paper number there only for the patients without insurance, who have to pay it all up front. I’m guessing BCBS has negotiated a much smaller rate — maybe closer to $1500? Or less?

So you know, that’s some nonsense right there. American healthcare system = nightmare mess. Let’s fix it.

https://www.jogc.com/article/S0849-5831(16)31318-0/pdf

https://www.mdsave.com/proc…/dilation-and-curettage/d482fecf

For the record, if I didn’t have insurance, I would certainly pay $347 for this procedure myself. I would not pay $8000; I would skip the procedure, and hope it didn’t cost me everything in the long run.

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Cancer log 207: Make appointments, get tests done

Cancer log 207: Nothing much to report yet — we’re in the ‘make appointments and get tests done’ part of the process, and since my oncologist (whom I met with this morning) agrees that it’s all probably nothing, there’s not a lot to do but work the problem.

It *is* irritating that Loyola has recently switched to a policy of scheduling 16 days out (to allow for insurance), so when the poor medical secretary was trying to schedule my MRI for me, she got all these questions from the other end about why she wanted it done quickly (because the doctor said so, because my doctor is awesome and thinks tests should be done quickly so you can catch things early if they’re there, which you’d think the insurance companies would also want, since early treatment is way less expensive than late treatment…).

The secretary got really flustered trying to answer the other person’s questions — “I’m not a doctor, I’m the staff person!” and ended up having to call back my doctor and have her write STAT on the order, which was not a great use of the doctor’s time either, being interrupted like that, probably when she was in the middle of talking to a patient.

I generally find inefficiencies super-frustrating, but this is the sort of inefficiency that costs lives. Not my life, not in this case, but how many tests will be delayed by these policies, meant to benefit the insurance companies? How many people will have their cancer caught critical weeks later?

How much money would America save, if we could just eliminate the profit-motive in medicine, and make healthcare the public good it ought to be?

I don’t know how to best attack that problem, but the Democratic presidential candidates had better be thinking hard about how best to achieve Medicare-for-all — or whatever they want to call it, I don’t care.

The linking of health insurance to certain higher-end jobs is an accident of American history, a painful accident we’ve all been paying for, for far too long. Time to end it.

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Cancer log 205: Wanting to do everything

Cancer log 205: I was listening to Hamilton on my way in to the hospital for a pelvic ultrasound (it’s probably nothing, but they’re checking, and I’m fretty), and “One Last Time” came on, which is probably not the song that hits most people the hardest, but it gets me every time.

“I’m stepping down, I’m not running for President
I’m sorry, what?
One last time- relax, have a drink with me
One last time.
Let’s take a break tonight, and then we’ll teach them how to say goodbye
To say goodbye, you and I
No, sir, why?”

I’m only at the middle of my career, not the end of it, hopefully. But this is one lasting effect of having had cancer, that the feeling I’ve always had, of wanting to do *everything*, to live my life as if I could be hit by a bus tomorrow, has intensified. By, like, a million.

I need to talk about it with a therapist, I’m pretty sure, work through it (in the queue: schedule therapist), because it leads to me driving myself too hard, trying to do too much, and that exhausts me AND paradoxically makes me less productive, because all the balls I’m juggling start smashing into each other. No good.

But it’s not going to be easy to work through, because I’ve been working for oh, 25-35 years, depending on what you’re counting from, and I’ve accumulated some knowledge, maybe even a little wisdom, and there is SO MUCH that I want to teach…

“I want to talk about neutrality
Sir, with Britain and France on the
verge of war, is this the best time-
I want to warn against partisan fighting
But-
Pick up a pen start writing
I wanna talk about what I have learned
The hard won wisdom I have earned”

I was talking to a friend a few months back, my college roommate, and she said that what she found most valuable about this blog were the times when I taught here, when I laid out the steps to do something — whether it’s something domestic, or writing-related, or dealing with cancer, or maybe just relational. (Sometimes I think the conversations I’ve had with Kevin about chore distribution are the most useful thing I can pass on!)

I’m an analytical person (also emotional — on Myers-Briggs, I test smack dab in the middle of the line on that one), so my response to problems is always to look at them structurally, to try to think through the best process, best practices. And then, because *teacher* is a huge part of my identity (and family history — many in my family were/are teachers, it’s in the blood), my instinct is to pass the knowledge on. Mostly through blogging right now.

“As far as the people are concerned, you have to serve
You could continue to serve”

When I was diagnosed with cancer in 2015 (I’m fine now, hopefully), the very first thought I had was that I had to sit down, immediately, and make videos for my children. One for every year of their childhood and early adulthood, telling them everything I might not be there to tell them, and of course it would be woefully incomplete, but better than nothing…

There’s a bit in a Bujold novel, when Aral Vorkosigan is talking about how the worst thing isn’t sending your troops out to battle — it’s sending them out, knowing you haven’t had time to teach them *enough*… That’s how I feel all the time these days, in the back of my brain.

I hope y’all are stuck with another 50 years of me, or more. I think one of my great-grandmothers lived to be over a 100, and I have access to much better healthcare than she did, the scientists and doctors are always learning more, so who knows? In my Jump Space universe, set a hundred or so years from now, the default human lifespan has increased to around 200. That would be nice.

But whether I have another year, or ten, or a hundred, eventually, you know, it’ll be time, and regardless of how much I’ve managed to download from my brain in the process, it still won’t be enough. (Maybe we’ll all be uploading into the cloud and living forever by then, but if so, a) it’ll be different, and b) I’m not holding my breath.)

“No. One last time, the people will hear from me
One last time, and if we get this right
We’re gonna teach’ em how to say goodbye
You and I”

Someday, I’ll have to stop, regardless, so maybe it’s time to start practicing that a little? Trust that I’ve taught as much as I reasonably can for the moment, and that it’s okay to take time to breathe a little. I don’t have to teach EVERYTHING.

Kavya’s been watching Friends, and yesterday I had to tell her that I thought Ross was a really terrible boyfriend, and I hoped she never dated anyone who treated her like that. Thankfully, she agreed with me. Chandler is her favorite character, and mine too, so maybe it’s okay if I don’t tell Kavi *everything* I know about dating. She’s got good instincts; she’ll figure it out on her own, and with luck, won’t make the same mistakes I made. She can make new, different mistakes, and hopefully none of them are irrevocable. Maybe that’s enough to teach her.

(That’s my main parenting wisdom, by the way — try to avoid doing things that may hurt you in life-and-death ways you can’t recover from. Drinking and driving. Hard drugs that will mess with your body and brain. Unprotected sex. But most things that frighten parents actually are recoverable, thank all the little gods. I was terrified to call my parents and tell them that I’d flunked calculus fall quarter freshman year — I was actually crying when I made the call. In the long run, though, it was just fine. All the videos I’d make for the kids? I’d end each one with that message.)

Last weekend in D.C., Elaine Martyn had us do a little exercise — she’d brought these cards full of images, spread them out on a table, and asked us to choose one that represented our legacy. Legacy is on my mind a lot these days, as you can see — the inevitable consequence of increased awareness of mortality.

I chose one that I sadly don’t have a copy of, so it’s not quite this image, of a crowd of penguins. Imagine the same crowd, but with one penguin a few steps away from the others. That’s me; that’s my job in life. Captain / navigator. Let me explore a little further, away from the crowd, maybe walking onto thin ice. I’ll report back.

Many years ago, I went to Switzerland, and got off the train in Basel to visit Benjamin Rosenbaum and his family. Ben met me at the train, and we started walking, and after a while he said, startled, that we were walking the wrong way. I’d started walking, and he’d just followed me, assuming I knew where I was going, even though I’d never been there before. He claims I have mutant leadership powers.

Perhaps. But I definitely go the wrong way, a lot. I think drowning myself in frantic work, the last few years, trying to do all the things, was the combined result of Trump’s election and cancer — my ‘fix the world’ instincts leapt into overdrive. And now I’m trying to document where I went wrong, and set up better systems. Iterate. It’s okay if you don’t get it right the first time.

“Mr. President- they will say you’re weak
No- they will see we’re strong
Your position is so unique
So I’ll use it to move them along
Why do you have to say goodbye?
If I say goodbye, the nation learns to move on
It outlives me when I’m gone”

This past weekend also reminded me that I’m not actually in this alone. I was in a crowd of fabulous women, so many of them working in government and non-profits, saving the world, one step at a time. Just looking at my sisters — both of them doctors, saving lives, but also one is a researcher working on AIDS and the other is training the next generation of doctors, iterating and questioning and creating new best practices, both for working with patients and for existing as doctors and humans, because gods know, there’s plenty of work to be done on that front.

And they’re raising beautiful, brilliant children, who will undoubtedly outshine us all — I am astounded daily by the thoughtful, conscientious, loving care that so many parents around me are pouring into their children. *There’s* a legacy for you, one that gives me so much hope. I don’t have to do it all. I can’t do it all. That’s okay.

I may have tried to pack too much into this post, as I’m having a hard time coming up with a single point to end on. I’ll leave you with Hamilton instead, and where I am right now — not ready to retire yet, not by a long shot. But I’m trying to slow down, be more deliberate. Unpack my thoughts more, communicate with the people who work with me, instead of expecting them to read my racing mind.

Go back to beginner mind too, and accept how much I don’t know, possibly *can’t* know. (That last is a hard one for the Hermione Granger in me, the girl with her hand up in the air, who wants to know everything.) Also trying to spend time and repair relationships with family and dear friends that were woefully neglected the last several years (because as much as I’d like to blame Trump and cancer, some of this is just me and my personality — those two factors just accelerated my natural tendencies). Trying to delineate where I went wrong, which will hopefully help someone.

Mostly, when I’m tired, rest. I am so bad at that.

Working on it.

“Like the scripture says,
Everyone shall sit under their own vine and fig tree
And no one shall make them afraid
They’ll be safe in the nation we’ve made
I want to sit under my own vine and fig tree
A moment alone in the shade

At home, in this nation we’ve made…”

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Cancer log 204: This is probably nothing

Cancer log 204: It is probably nothing, and I hesitate to even post this because I know that my dad will worry, but in the interests of documenting honestly, there was a thing on the mammogram yesterday that was a bit unclear.

They had me come back into the room and take some more photos, and then they had me go do an ultrasound, and now they’re still not sure if it’s just a bit of fat that moved around to a different place after surgery (they had a nicer term for that, but I can’t remember what it was) or possibly a mass, so the next step is to talk to my oncologist (I was scheduled to see her routinely next week anyway), and then either do a MRI or biopsy or both.

As Kevin says, this is probably nothing, but you know, the last time they did a biopsy, it was also probably nothing and it turned out to be cancer, so to be honest, after all that eating up three hours yesterday morning, I was kind of a mess for the rest of the day. I’m also fighting a cold, and between the two, I felt very lacking in resources, so I ended up skipping out on my monthly writing workshop (sorry, Acorns!), getting cheesecake and wine, taking a hot bath, and mostly snuggling with Kevin and fretting at him. All of which did help.

Adding insult to injury, I’ve had some weird breakthrough bleeding recently, and I thought my period had come back, but the labs say I’m definitely in menopause, which would be great, but the bleeding means they want to do further work-up, so tomorrow morning will be eaten up by pelvic ultrasound with biopsy. Again, probably nothing, but I am feeling stressed enough by the return of poking and prodding that I’m planning to proactively ask my doc if she can prescribe a Xanax for me to take before the procedure.

Sorry if I’m a little less on top of my game than usual for the next few weeks, folks who have to work with me. Hopefully this will all get resolved very soon, in the most boring of ways.

#blog

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Cancer log 203: LiveStrong

This is a paean to lackadaisical but regular exercise. So, this March, a year post-cancer treatment, I signed up for a free program at the local YMCA (funded by the Lance Armstrong foundation). I agreed to show up Mon / Wed from 6 – 7:30 for 3 months, let them run me through a mix of aerobic and weight training, and I’d get a free membership to the Y for completing the program. (This is sadly not available at all Y’s — if you’re a cancer survivor, check with your local Y if interested.)

The reason I’m posting is because I was a totally mediocre participant. I missed at least a quarter of the classes due to scheduling conflicts or winter colds. When I went, I never did more than the minimum expected, and the minimum was pretty minimal, because the class was geared towards people recovering from illness, and so it was all ‘go at your own pace,’ and ‘lift only as much as you feel like.’ It was a busy semester, I was harried and tired and cranky about going.

And nonetheless, the numbers don’t lie. My cardio capacity generally is not great, but if you look at my resting heart rate at the end of a 6-minute walking function test, it dropped from 132 to 111.

The amount I could lift with both arms and legs also increased (75 / 275 to 85 / 305).

(Sidebar: yes, my legs are freakishly strong. I attribute it to my work-study job freshman year which had me trotting up and down stairs for two hours every weekday, leaving me with calves-of-steel.)

The changes are minor, but considering that I wasn’t tracking or making any real effort to lift more than was easy to do, I’m still pretty impressed. What’s more, everyone in the class showed similar improvement, including people who were much older, much more out-of-shape, and much more recently ill than I was.

Show up, as regularly as you can manage. It matters, in exercise and elsewhere.




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Cancer log 202: Perennial Launch

Huge thanks to Garland Flowers for hosting my little garden romance launch party yesterday, for Perennial! Since the story opens in an Oak Park flower shop, it was really perfect to have our launch party there, and the owner and staff went out of their way to make it a lovely event. I commend them to you for your local floral needs!

Thanks as well to everyone who came out last night. This is a very personal little book, and the kind support of friends, family, and complete strangers — through cancer treatment, all the way up to now — means everything.

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Cancer Log 201: Capacity

It seems like I should be done keeping a cancer log at this point, years out of treatment, but I occasionally run into weird things in my brain that I think are probably related to cancer.

I’ve always said, since college anyway, that I wanted to live my life as if I could be hit by a bus tomorrow. (That prospect is a lot more terrifying now that I have children, because of what the consequences of my death would be for them.) Both then and now, I think I’ve done a pretty good job of saying yes to experiences, choosing to do and pursue the things I deeply wanted, not letting fear stop me. It’s a pretty fundamental part of my character, I think, to try to live as fully as I can.

Where that intersects with cancer, though, is I think that tendency has ramped up since the diagnosis. My first thought on diagnosis was the kids. I got the call at work, at the end of the day. I sat in my office, shaking, not feeling safe to try driving home yet, imagining what I would put in the videos I would make for them, all the mother-wisdom I would try to pack in, so they’d have it when they needed it, when I wasn’t there.

The second thought was about the books. All the books I hadn’t written. Isaac Asimov wrote over a hundred books; supposedly when he was interviewed late in life, the interviewer asked what he would do if he only had a little time left to live, and Asimov said, “Write faster.” I drove home eventually, sat next to Kevin on the couch, silently pressing my body into his, imagining all the books I wouldn’t get to write.

Then there was treatment, which took all the time and energy for a year and then some. And then I got back to writing, and since then, I have been writing and writing and starting gazillion projects and finishing some of them and not finishing others and it’s all kind of a mess right now. I hired a part-time assistant and then I hired another one (for just a few hours a week, to do different things), and slowly, I’ve been catching up on all the backlog, and getting back to writing properly again.

I’ve been running flat out, and there are days, weeks, when I wake up in the morning and I’m just going from morning to night, crash in bed, repeat the next day. I take a little NyQuil to keep me asleep most nights these days, because otherwise my brain is racing too much and I wake up over and over. That’s new since the cancer.

The good thing about hiring assistants to make time to write is that they do a lot of the household chores and SLF tasks and so I do have more time to write. But writing, it turns out, is exhausting. It is mentally and physically and sometimes emotionally draining, and if I try to do more than 3-4 hours of it a day, the writing suffers and I feel horrible.

Hiring assistants has helped me become more productive, but I am also paradoxically more tired, I guess because there was some mental rest and downtime built into the tasks that they’re doing now. I would watch tv while doing laundry, and now, I’m working in that time instead, and at the end of the day, I’m more tired than I was before.

All of this makes me a worse parent too, exhausted and too drained to want to play with the kids, and if I say, “I have to work,” to Anand one more time, I’m going to cry.

My dad worries that I work too much. I tell him I’m fine, and I am basically fine, but he’s also probably right. The urgency that is driving me to produce produce produce is also driving me to exhaustion, and I have got to figure out how to do a better job of resting.

I love my work. I love it to pieces. I am happiest when I am working to capacity, but I just can’t do that all the time, because then I fall down. I got to this convention, and I had planned to write today, but I basically checked into my hotel room, took off my pants, and climbed into bed for the rest of the day. I did a little work from bed, but just e-mail, nothing creative. The well is dry.

I need to work to capacity, but not past capacity. I need to allow time to refresh capacity. Without feeling guilty that someone else is doing my chores and I’m just…sitting there? Reading a book, taking a nap.

I’ll figure this out, but none of it is as simple as I want it to be. And I am terrified that I will fail to write my books. I wrote one book I’m really happy with, Bodies in Motion. I was satisfied by that. I managed another eventually, The Stars Change. (It’s not perfect, but it does most of what I wanted it to do.) But there are least 3-4 more books in my head that I have not managed to get out properly yet, probably more like a dozen, and it’s making me a little crazed. If the bus hits tomorrow, I’m going to be furious.

The only real solution is to get the work done, but I have GOT to pace myself.

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Shipments

Shipping out signed copies of Perennial today to the ten people who pre-ordered, along with a little gift of a photo card of a flower from my garden, and a handmade fairy tale bookmark made with pressed flowers from my garden.

I just wanted to say thank you for the early support — this creative process is so unpredictable sometimes, and it’s hard to guess whether what you’re doing is anything anyone else would care about. Having people who show interest (and are willing to plonk down cold hard cash) early in the project is worth more than I can say.

So thanks to Christina, Petri, Mathew, Darrah, Caryn, Snezana, Cliff, Normandy, Amanda, & Carlos. Also thanks to those who ordered e-books; look for those in your inboxes in just a few minutes…

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Perennial Arrives!

My books are here, my books are here! Woot! They look so lovely, just as I’d pictured them. Thanks to Jenn Reese for the gorgeous cover design, and to Steve Berman at Lethe Press for the beautiful overall design (I love the matte finish, Steve!).

Thanks to Lethe as well for being willing to take a chance on such an odd little book: part garden romance, part cancer memoir, part poetry collection. And illustrated by novice artist me. It’s a very personal little book, but I hope one that many of you will enjoy.

I’ll have books available with me at PenguinCon (next weekend in Southfield, MI), at the Saturday night SLF party at WisCon (Memorial Day weekend in Madison), and at the launch party in Oak Park (June 14).

There’s a slim possibility I’ll make it to Denver ComiCon, and I should be at OutWrite in D.C. in early August, and WorldCon in San Jose in mid-August.

Otherwise, I recommend buying them directly from Lethe!

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