Rosemary Kirstein

This morning, Facebook reminded me that it’s been two years since my last chemotherapy session.

And how am I doing now?  Fine, just fine, medically speaking.

Well, I’ve got the scars.  And a sort of… call it a divot.  Because the chemo was so successful, I didn’t need the full mastectomy that we all expected at first.  They ended up removing so little tissue that under most circumstances the divot isn’t even noticeable at all.   The site aches a bit when I move in certain ways, but not enough to limit my motion at all.

I’ve been lactose-intolerant as a result of chemo for the last two years or so, but it actually seems like that’s starting to back off.  I might be free of it, soon.

I have some residual numbness in my fingers and feet, also a known side-effect of the really aggressive course of chemo we took.  It’s weird, but manageable: sometimes things can slip from my grip, especially very smooth things.  I just have to pay closer attention than I used to.  I have to watch out for bruises and cuts on my feet in places I can’t feel, and be careful of over-flexing.  (Which always reminds me of Cordwainer Smith’s story, “Scanners Live in Vain.”  I have to scan.)

And I have periodic check-ups from my oncologist and surgeon.  But these are being scheduled at longer and longer intervals.

So… No problems.  Two years later, no real problems.

When I reread the blog posts from the time of my treatment, it seems as if I was perky and cheerful for most of the experience — but I know that much of that is illusion, caused by the facts that a) I used my blogging to cheer myself up and stay positive, and b) when I felt really unhappy, I just didn’t blog at all.   But trust me: I experienced the full range of possible emotions during that time.  Including some that defy description.

I got a lot of support and encouragement from the comments and emails from all of you, by the way.  I can’t express how much it helped me to know you were out there rooting for me.

Of course, my sister Sabine was my main support person, and I was so lucky to have her.  Still am, generally, by the way — but especially during that time.  I can’t say enough good things about her and how she helped.

I had many things planned for that time, most of which had to be abandoned, or changed, or  postponed.  I was barely able to write during that period.  Some  writers and artists actually manage to maintain (or even increase!) their creative output during cancer treatments.  I was  not one of those.  The emotional limbo interspersed with  periods of stabbing angst were not, I found, particularly conducive to maintaining the clarity of thought and steadiness of imagination I needed to make serious progress.  I had some spurts, but nothing I could maintain for long.

However, one thing that I did manage during all that was the publication of the ebooks.  For the most part,  the process was straightforward dog-work — tedious, but doable.  And with no set schedule and no deadline, I could do as much as my strength and mental acuity allowed at any particular time, and set it aside whenever I wasn’t up to the effort.

Below: Links to the posts I made during my whole cancer experience.  I just reviewed them myself, and found it pretty interesting…

12/23/2013: breaking the news

Sometimes the wind comes out of nowhere and knocks you sideways.

12/30/2013: First chemo

Quick post.

01/08/2014: A rant on pseudo-scientific bullshit included here

Amazon emails! Plus: here come the loonies

01/13/2014: losing my hair, but I don’t care…

Abandon ship!

 

01/19/2014: missing out on Boskone that year

As I feared, no Boskone for me.

01/28/2014: in the chemo suite

Three down, five to go

 

02/05/2014: health update inside ebook update

Predictably… Plus: ebook update

 

02/13/14: at the halfway point.

Snow day! Plus: halfway through chemo. Extra flash: Delia Sherman’s Con or Bust offering!

02/27/14 :  one way you  know you’re using the right chemo

You know what? This stuff actually works.

 

03/12/14: Cumulative effects of chemo, including no guitar-playing

Still here…

 

03/24/14: Just another day in the chemo suite

Use it when you’ve got it

04/01/14: Chemo continues, despite blizzard

Many thanks! Plus: Bumped by the blizzard

04/04/14: A hat.  I wore a hats a lot during my treatment

Delia Sherman knitted me a little hat.

 

04/07/14: Numbness side-effects of chemo, with drawings!

Annoyances and updates

 

04/25/14: Gaining strength once the heavy-duty part of chemo is done

Still here…

 

05/09/14: Surgery had to be postponed…

Surgery postponed

05/13/14: The body has a mind of its own

Foiled again.

 

05/21/14: results of that biopsy

About that biopsy…

 

06/01/14: More delays

Wait, what? Postponed AGAIN?

 

06/06/14: Just an update to say all went well

Quick update

 

06/07/14: What the surgery entailed

Two days later

 

06/15/14: Could not ask for a better outcome

And the official pathology report says…

 

06/24/14: Radiation therapy meant no WorldCon in London for me

Well, about WorldCon in London…

 

07/08/14: Prepping for radiation therapy

Hey, I got a tattoo!

 

07/17/14: Echocardiogram, because of Herceptin

Briefly ….

 

08/28/14: A post mostly about a poll, but including info about radiation side-effects

Poll reports. Plus: Ow.

 

09/07/14: And heading back to the day-job

Inching my way back into the Day Job

 

12/29/14: An essay on radiation therapy

Radiation therapy and me

 

02/25/2015:  Herceptin isn’t killer chemical like most chemo, so at some places they call a patient’s official Last Chemo the last of the heavy-duty chemo…. but at my hospital, they declared my chemo over with my final Herceptin infusion.

Last chemo

And that’s it.

Sometimes, looking back, it all seems sort of unreal.   I remember it all quite clearly — but heck, I have a writer’s imagination.  There are plenty of things entirely imaginary that exist in my mind just as clearly as if they happened.

I do know how to tell the difference, however.  This was real.  And… seems to be over.

In other news: Hey, I’m alive!

 

They told me three things, over and over:

1. You won’t feel anything at all.

2. The treatment is over very quickly — the actual radiation part just takes a few minutes.

3. The machine will never touch you.

They said that so often (the radiation oncologist, the radiation therapy nurse, the RT techs, the books and websites I consulted), that I realized that these were the three things that most people found most scary. Will it hurt? How soon can I get out of here? What is that thing, and what is it going to do to me?

Those reassurances got said a lot because they usually need to be said a lot.

To the average person off the street, radiation mostly means atomic bombs, and possibly nuclear power stations melting down and poisoning everything, and people dying in horrible, agonizing ways.

The healthcare providers had to work against those preconceptions. They explained, reassured, and tried to make everything as non-threatening as possible.

And I figured, even as geeky as I am, I probably had a lot of those same preconceptions and negative associations stuck way down deep in my psyche, absorbed from the general culture, where they might leap out at me unexpectedly — and, say, cause me to completely freak out during treatment.

Which I did not want to have happen. I’d be getting radiation therapy five days a week for eight weeks, and it would be great if my lizard-brain wasn’t trying to kick me into flee-in-terror mode every time.

Forewarned is forearmed, so I reviewed all the info I was given, read up on the events that would take place during treatment, did a little deep breathing, and reminded myself that all this was happening because things were going better than expected.

According to my original treatment plan, I was going to have two kinds of chemotherapy, a mastectomy, and then some more, lighter chemo (Herceptin only) — and the timing even would even allow me to get to the World Science Fiction Convention in London in August.

But (as my regular blog readers will recall) the two rounds of heavy-duty chemo worked brilliantly.  My tumor shrank and shrank, and eventually became undetectable by x-ray and ultrasound.  In fact, a biopsy (remember that unplanned biopsy?) actually showed no sign whatsoever of any cancer remaining in the area.

So, no mastectomy after all, gladly. Just a “lumpectomy” (more accurately called a partial mastectomy). A fairly large one, but nothing like a full mastectomy.

But with a lumpectomy, you get radiation. This, to chase down any random cancer cells that might have stayed behind after the surgery, and zap them dead before they do their out-of-control reproduction trick. I knew that there would be side effects to the radiation, and the effects would accumulate (and might become pretty nasty), but the delivery of the radiation doses would not actually hurt, or even be felt at all.

So, I went through all the preliminaries: the CAT scan to identify the exact measurements of the treatment area (so they don’t irradiate more of your body than needs it); the simulation, where they test out the aiming; the tattooing of tiny dots to help with the precise aiming; getting my body position exactly right, and making the custom brace to hold me in that one right position, so that everything is the same each time, no variation — all that.

Eventually we got down to the real deal, and I found myself being led down the little corridor with the large sign saying PATIENTS ONLY IN THIS AREA; and the other sign with the light, saying RADIATION IN USE WHEN LIT; when I noticed another, little sign on the wall by the entrance, reading:

LINEAR ACCELERATOR

Wait, what? I said to myself as we passed it by and continued down the hall.

In the treatment room, the radiation techs ran over everything one last time, including reminding me: I wouldn’t feel a thing; the actual radiation part would be over quickly; and the machine itself would never touch me.

Them: So, that’s about it. Now, before we start, do you have any questi —

Me: Yes. Yes, I do.

Them: Oh — Okay, what’s your ques —

Me: Is this really a linear accelerator?

Them: Well… yes. Yes, it is.

Me: THAT IS SO COOL!

Them: (pause) …what?

Me: Seriously? A linear accelerator? So, subatomic particles are going to be sped up to, like, 99 percent of the speed of light? Right here?

Them: … yes…

Me: For me?  To zap my cancer? An actual linear accelerator?

Them: Well, yes —

Me: THAT IS SO COOL!

Them: (big pause) … really?

Me: Yes.

Them: Well… you know what else is cool? This whole thing is computer driven, with all your measurements stored, along with the treatment plan and digital control of the specific gantry movements …  and we work it from this console over here… there’s a digital 3D mockup of your treatment area, and — would you like to see?

Me: YES, PLEASE.

So they brought me over to the console and showed me the mockup of my treatment area: an exact and precise little bit o’ me, color-coded, rotatable in three dimensions on the screen, and it was also so extremely cool.

Me: This is one slick machine.

Them: It’s amazing.

And it was.

 

Come on — what sci-fi nerd wouldn’t love this? With all the calibration circles, and the sleek cowling, and the way the gantry completely rotates all around the patient, so once you’re in place you don’t have to reposition at all.  Minimal fuss.  It’s not just pretty — it’s such a smart design.

Possibly sometime before this point, it had been mentioned to me that a linear accelerator was used, and I just missed it.  But, I don’t think so.

I had been told what to do during treatment, and the fact that a machine would be used to deliver the radiation.  But somehow I got the idea that they had some, I don’t know, radioactive substance in a container, and they’d point it at me and open a little window of some sort, allowing the radiation to escape and wash across my cells.

But no, nothing of the sort.  The linear accelerator uses radio waves to speed up a stream of electrons to close to the speed of light; and magnets control the stream and focus it; and the beam hits a tungsten plate, and the plate spits out x-rays.  On demand.  A beam of x-rays, which then gets focused and further refined and shaped before reaching the patient.

There’s only radiation when the machine is actually being used. And only the exact amount that you need.  And carefully focused, and precisely aimed — it’s a thing of beauty.

Plus: linear particle accelerator?  That’s the same thing that feeds the initial particle stream into the Large Hadron Collider.

Okay, they’re using protons and we’re using electrons… but hey, same damn concept, right? How is this not cool?

I let the techs know that I was a science fiction writer, which helped explain to them my deep delight in this wonderful machine.  They loved it too!  They were proud of their machine, and proud of how it helped people — and they were resigned to the fact that most people were going to be afraid of it.  And they did their best to calm the fears, and reassure their patients.  But these ladies (and they were ladies — all the radiation techs were women), they knew what a fine technological accomplishment this machine was, and they were glad to be the ones using it to help save their patients lives.

And I was (and they told me this) the only patient to ever actually like the Elekta Infinity Linear Accelerator as much as they did.

Them:  Do you want to see behind the scenes?

Me:  Do I? YES.

 

Me: Well. Now it looks like a particle accelerator.

Them: (giving me the side-eye) And how many particle accelerators have you seen?

Me: Um. I took the tour of Fermilab, back when the Tevatron was operating. And of course I’ve seen any number of photographs of the Large Hadron Collider…

Them: (amused) Okay…

Yeah, it doesn’t look exactly like either one of those… but I feel I detect a sort of family resemblance.

 

 

So, what’s the point?

Cool trumps scary.

Eight weeks, five days a week, I’d sit in the waiting room with all the other patients scheduled before and after me.  And when my name was called, I’d stroll on into the treatment room, cracking jokes with the techs, slide into position, let the techs micro-slide me into a more precise position; and the lights would dim, and the women would speak quietly to each other for a while, chanting numbers; and the laser aiming light would locate my position even more precisely… And the techs would step out of the room.  And the gantry would hum and move about. And pause, and click a bit, and pause; doing its job, accelerating electrons up toward the speed of light…

I didn’t feel a thing.

It was over very quickly.

The machine never touched me.

But I had to resist the impulse to give it a little friendly pat on my way out…

 

(Here’s a video by the company that makes the Elekta LINAC, that explains it all.)

 

(Added later: I’ve collected  most of the posts about my cancer experience in one list here, if you’re interested and don’t feel like searching through the archives.)

I feel pretty good, actually.

At this point, I only feel any actual pain when I lift my right arm, or use it for something involving carrying weight.  And I seem to have a bit of a rash on my chest  from the surgical tape, which is something that sometimes happens to me.

It’s hard right now for me to tell how much tissue was removed, because there’s  a certain amount of swelling in the general area, after the surgery.  But I can tell this: not a whole lot.   I’ll probably end up with a dent or divot of some sort, but right now the only visible sign of surgery is the great big incision.   I’ll get the official word on what was what and what it means next week, but it’s clear to see that what was removed was nowhere near as much as I expected.

Also: only one lymph node was removed, under my arm, and that’s great news.   And that’s actually where most of my pain comes from.

And the dreaded needle localization, performed via x-rays this time instead of MRI, was no problem whatsoever!  Other than the usual bizzarro Egyptian-hieroglyph postures that accompany every mammogram.  Those are always at least perplexing.

After the needle loc, they set me up for a sentinel node biopsy, which is a very clever procedure indeed.  What they do is inject a brightly-colored radioactive dye into the tumor area (that was actually pretty painful, but was over quickly), wait a bit, and take some x-rays.  The dye heads over to the lymph nodes that drain the area of the tumor, which then show up clearly on the images.  So, what the surgeon does later is remove the first lymph node in line (the “sentinel”), and quickly send that out to be tested, while-u-wait.   If there’s any cancer in that lymph node, then they know they have to remove a bunch of nodes, all along the area; but if not, then no more lymph nodes are removed.

And I clearly do remember, later, being told that the sentinel node had zero cancer.   So nice to hear.  Thus: only one lymph node removed.

They didn’t use general anesthesia, just a deep version of local, plus a sedative.  I remember them wheeling me out of the prep room, and I think I remember arriving in the operating room.  I’m pretty sure the usual words were exchanged (where they ask you to describe the procedure you’re about to undergo, so everyone’s on the same page), but I can’t clearly recall it.   And then they applied their drugs, and I slept, and it was all sentinel node biopsy, and the lumpectomy, while I was in la-la land.

I don’t recall arriving back in prep room post-op.  Sabine tells me that my first words to her when she saw me were “Piece of cake,” but I’ll have to take her word on that.   But it does sound like something I’d say.

So, right now: well, I don’t feel 100%, that’s sure.  I’m tired, I get exhausted easily and often.  What I do about it: nap.  Works for me.

I took pain pills religiously for two days, then forgot and find I don’t need them.  I might take one at bedtime, to help me sleep.   I’d heard that it’s not uncommon to not need much in the way of pain meds for this type of surgery.

So… all is well.  Now I just have to heal up so that they can start the radiation therapy.

Oh, and at some point I’ll be going back to the dreaded day job… darn it.

Oh, and Welcome to Night Vale’s live show the night before surgery?  Totally worth it!  I’ll tell you more about it later, but now I’m getting worn down.

But I do have to say that what made it possible for me to even consider going to that show was having a place to crash for a while after the train trip in to New York, before the show itself.  For that I thank Ellen Kushner and Delia Sherman, who kindly lent me their guest room for the afternoon.   Lovely and peaceful.  Plus: wifi!

(And by the way:  Ellen and Delia are involved in the Interstitial Arts Foundation, and are currently raising money for Interfictions, the online interstitial arts magazine.  You want to know what “interstitial” means now, don’t you?  Of course you do. Click to check it out.)

I’ll fill you in on the Night Vale details later (for those of you who are interested).  Right now: time for zz’s.

 

 

 

I’m sorry to say that I have some very bad news. I wasn’t certain that I wanted to tell this just before Christmas, but for no clear reason, I feel that I ought to. Just to get it said and done, I suppose.

The bad news is this: I’ve just been diagnosed with breast cancer.

Now that I’ve dropped that stunner, I want to immediately reassure you: my prognosis is good.

The treatment of cancer has come a long way in the last couple of decades, and breast cancer in particular has been very well-studied. The type of cancer I have has targeted treatment available, and the track record on this is good.

Let me pause to stress that: Track record is good. They know what to do.

I have a lot of confidence in science. If you’ve read my books, you know that.

My doctors and I have decided on a course of treatment, and tomorrow I’ll be meeting with the nurse oncologist to finalize my schedule of chemotherapy, and my date for surgury and so on. So far, the plan is for aggressive chemo starting December 30th, surgery sometime in May, followed by a less difficult course of chemo through the end of 2014. If the chemo works really well, I might be able to do without radiation entirely! We’ll have to see how it pans out.

And oddly, at the moment, my spirits are actually pretty good. And this is because I went through a battery of advanced (and frankly geeky-techno-cool) tests (CAT scan, MRI, mammograms, ultrasounds, radioactive bone scan, heart test involving making my actual blood radioactive!) and the word is — no cancer elsewhere.

That’s great news! The day after I was told that, I had these waves of happiness wash over me periodically. I had to ask myself, Why am I happy? Hello, I have breast cancer!

Because it’s ONLY in my breast and nearby lymph nodes. This is treatable.

All this happened in the past two weeks, and it’s been a whirlwind. And during everything, my worst fear was that the cancer would be advanced, and untreatable — but that’s not the case.

This cancer is treatable, and the treatment is endurable.

It will be difficult, miserable, unpleasant in the extreme at times — but the chances are very high that it will work.

I’m also lucky that my sister Sabine will be with me through all this. There will be times when the treatment will leave me very ill, and it’s good to know that she’ll be here to help me out. I’m more grateful to her than I can possibly express.

I’ll get through it. And we’ll probably be at Worldcon in London, too. I’ll be past the worst of the treatments by then, and on a lighter course of chemo, every three weeks. We’ll just slip London into one of the gaps, there.

But between now and then, it’s going to get tough.

And some of you are aware that I was working on launching a Kickstarter campaign that would allow me to quit my day-job and write full time.

Unfortunately, yes, that had to go out the window. For the next year, at least. For two reasons:

1. My day-job provides my health insurance. And this stuff is going to be crazy expensive.

2.  I could not in good conscience ask people to pre-fund a year off to write when I might spend significant portions of that year too ill to do much of any use.

So, sticking with the day-job.  They do tell me that they’re willing to work around whatever schedule I need.  Which is nice of them.   Yep.   Sticking with the day job.

Man, that’s especially disappointing!  I was so looking forward to just walking out that door…

Well, that’s gloomy. What we need here is a little ray of sunshine.

Ooh! How about this:

 Yes, this is the eBook. Yes. I said YES.

 You know I had been working on the eBooks, right?  Many people have complained about me not releasing them yet…

The reason I hadn’t released them was that I was planning on using them as rewards for contributing to the Kickstarter campaign.  (Like, for $10 you would have got an eBook of the new book when it was done, but for $25 you would get that PLUS immediately, the eBooks of all four previous books, no waiting involved!)

With Kickstarter out of the picture, the eBooks can begin to roll out!

And I really,  really, wanted at least one to be on sale by Christmas.  And, oh look!  There it is.

Because, you know.

I had assumed (with the Kickstarter) that I’d have until the end of January to finalize the covers and formatting, and all the attendant self-pub chores that you don’t realize until you’re in the Bowker ISBN registration website, trying to click on all the clicky things to get your official registration done.  And then on the the Kindle Pub site for more of the same.

But I really wanted it done by Christmas, sort of as a statement of confidence, if you will.  So, I took all the stuff I’d set aside for January and did it yesterday and today. For the first book in the series that is.  And only on Kindle so far.

I’d have loved to get them ALL on sale by Christmas, on all platforms… but it just wasn’t possible at this short notice.  Still,  having done one, I now know the ropes and the others will move out pretty quickly.

I have to say:  Thank you, thank you Scrivener for streamlining the conversions!

And, there it is.  I can’t believe I did all that in a day and a half.   It Was Fun.  But exhausting.

Oh, did I mention that the eBook version of The Steerswoman makes an excellent last-minute Christmas gift?   I feel I should mention that.

So, there you are.

Despite all expectation, I seem to be having a very merry Christmas.

I hope you have one, too.  You deserve it.  As do we all.