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!

 

On Thursday, they took out my portacath.

I was awake in the  OR, sort of sedated (although, not by very much), with the general area just locally numbed.   At some point, the doctor said, “Do you want to take it home in a jar?”

I had not known this was an option!  “Yes, I would!” I said definitely.  I think my enthusiasm took took him aback.

But, yep, I now possess, outside my body, a thing that resided inside my body for 15 months.   This object did a stellar job for all that time, sparing my arm-veins from the repetitive damage of regular (sometimes weekly) chemo infusions.    Implanted under my skin, with a catheter leading to my left subclavian vein, it has a self-sealing silicone dome that allowed the nurse access with just a little needle prick through my skin and into the dome area.   They could draw my blood for testing, and pour in those mighty chemicals –  no muss, no fuss.

It made my life a whole lot easier.   Great invention.

 Here’s Wikipedia’s description.

I figure, I’ll get one of those old-fashioned bottles, like the ones they used to use in natural history collections, stick it in, seal it with sealing wax — voila!    Artifact from my chemo days.

All in the past now.

 

Yikes, I just realized that it’s been two weeks since I blogged!

This is not due to me being completely under the weather, do not fear. It’s due to me being partially under the weather, and then trying to use my up-times to get some work done on the ebooks. I would love to get the rest of the Kindle versions out by the end of this month. The epubs are in process, as well, but less speedily…

Meanwhile, I had TH chemo on Monday again. It’s a lot of stuff that goes in.

 

I don’t actually feel bad during the infusion… I just chill out and read and surf the internet, write a bit,  make notes, listen to music.   Thank goodness this hospital has free wifi!    They have TV’s at each infusion station, too, but bleagh.  Daytime TV?  No way.

Sabine’s going to be taking a week’s vacation from me, hooray for her!   She’s had to do a lot.  Our pal Brian is coming on Sunday do fill in for her and be my minion, and Sabine will be basking in sunshine by the sea.   About which I’m jealous, of course.   At least the  weather around here, while still swinging wildly, is hitting some nicer numbers on the upswing.  I try to take a walk for about half an hour, on days when I can.

Meanwhile, hey, I’ve got radioactive blood!  Yesterday they did a MUGA scan (Multi-Gated Acquisition Scan, also known as radionuclide angiography), to test my heart-valve functioning.   They do this every three months in order to track a not-common but possible side-effect of my treatments.  They want to stay on top of it.  I’ll know the results on Monday next.

Naturally, many jokes with the radiology tech person.   I was leaning toward Spider-man, she tending toward the Hulk.   The student in attendance, a young foreign gentleman, was a bit puzzled at us.

The new chemo has a huge dose of steroids to accompany it, but for a shorter period than previously, meaning that I’m moving into a crash-mode right now.  Last time, Wednesday was the hard day for the crash, with other attendant annoyances and pains — so, more to come shortly,  I suppose.  Fortunately, I’m off work, so my calendar is clear…

Minor but annoying side-effects:  I cannot play the guitar!  This because the AC portion of my chemo had a cumulative side-effect of dehydrating my skin so much that no amount of lotion prevented my fingertips from being crazily-sensitive to any kind of friction, and actually sometimes cracking.  I  believe this was exacerbated by all the paper-handling in my day-job, which I was still working at that point.  Also, as a finger-style guitarist, I use my nails to play… and the other common side-effect is that your nails start growing in weird.   And freakishly painful.  Like having a tiny, tight vise on each finger.

That’s starting to diminish now, although the fingernail thing, while hurting less, remains peculiar.   And kind of creepy, with multiple subsurface colorations.

When I signed up for Worldcon in London, I told them I was interested in doing a 20-minute musical performance… I’m hoping I’m back in the musical groove by then, but if I have to back out of that part, it’s not the end of the world.  Heck, I don’t even know yet if they’re going to give me a slot at all.

Meanwhile, my oncologist is still pleased with my progress,  the surgeon’s happy, and I’m just movin’ on down that track toward getting this thing to be gone.

In other news: yes of course I watched Cosmos!   Love Neil deGrasse Tyson.  I thought it was delightful and moving.  And I agree with most reviews I’ve read, that the animated bit about Giordano Bruno ran a bit long… but it did serve as a reminder that there were times in history when disagreeing with religion could get you killed!

Wait, that’s still today, isn’t it?  Depending on where you live, that is.

 

 

 

 

I had an MRI last week, and the good news is that the tumor has shrunk.

Significantly.   To just over one-third of its original size.

And my lymph nodes all look normal.  Which they did not before.

So… wow.

I was confident before that things would improve, and that science rules.   But it’s so lovely to actually see the results.

I still have plenty of chemo to go, but we do know that we are on the right track.  For sure.

Meanwhile, I sort of overdid things last week, trying to get my Day-Job ready for me being out for an extended period.   This involved lots of sudden creation of documentation for the more arcane procedures that I do weekly and monthly.   The company did not bring anyone in to cover my work — they’re just shifting it around to other people.  All these other people have jobs of their own to do.   I’m not sure how high a priority they’ll make the additional tasks.  I suppose that time will tell.

So, I actually put in over 40 hours last week, including Saturday, which did wear me down some.    But as of this week, I’m out of the office for a good long time.

On Monday, we switched chemo from one combination (Adriamycin plus Cyclophosphamide, called AC) to another (Taxol plus Herceptin, called TH), but since the side-effects of chemo do accumulate, I’m still feeling the build-up of all that AC.   I’m very run down, and this is a week were a lot of sleeping is taking place.

Reading is tiring this week (as is concentrating), so I’m mainly doing audiobooks.  What I’m listening to:  Girls Like Us: Carole King, Joni Mitchell, Carly Simon &  the Journey of a Generation, by Sheila Weller.  I mainly bought it because of Joni Mitchell, who was so, so influential in my life; but I’m finding Carole King’s story just as fascinating, and Carly Simon’s illuminating in a different way.  King was lower middle-class/working class, Mitchell was solid, stolid middle-class Canadian Prairie, and Simon’s background  was upper middle-class, and very privileged.   Between the three of them, serially and overlapping,  they cover a period when women’s lives and what was possible for women to accomplish were changing wildly — and the hippie culture, and drugs, and birth control were all coming in around the same time.

The author, Sheila Weller, is a bit uneven, occasionally overblown, and seems sometimes to heavy-handedly speculate towards the most dramatic interpretation of ambiguous events… But mostly she’s fine, and is revealing exactly the sort of information I want to hear.

Ebook update: No ebook update this week, sorry to say.   Just too beat to accomplish anything worth reporting.    Next week is an off-week for chemo (only the H of the TH combo), and I’m hoping to get a bit more energy in the next few days.

Lastly:  Here’s a TED talk I liked when I first heard it,  recently heard again, and found I still like it just as much.

 

Yep.  It was chemo day.

First time, and I feel pretty good so far.  Tired, but not bad.

Still working on the many replies to all the supportive comments and emails…  you guys are great.    I’ll post a note when I’ve replied to all.

In other news:  Amazon still has not got back to me about allowing the early purchasers to get a corrected version of The Steerswoman, without that peculiar issue where  “replace” was replaced with “With”.   It’s only 25 occurrences in the entire book, but I tried to stress to Amazon that my readers needed the real version!   They say they are reviewing the issue.

Well, it’s the holidays and real people at Amazon have to make the decision, so it might be a bit.   If we get no action, I’ll consider alternate ways to make this right.

Hey, know what I did during chemo?  I wrote.

Take that, cancer!