Jun 24 2014

Well, about WorldCon in London…


I had to do it — I had to cancel out entirely.



It turns out that my radiation therapy won’t be completed in time.

Originally, I wasn’t even going to get radiation therapy at all.   Back when I was first diagnosed in December, it looked like I’d be getting a mastectomy, and hey — no radiation with a mastectomy, because nothing remains to irradiate!  So… with a mastectomy and plenty of time to heal, I would have been all set by the time WorldCon rolled around.  My chemo would be only once every three weeks by then, and the trip would fit so neatly in one of those gaps…

But, as you know if you’ve been following my adventures, the chemotherapy worked brilliantly, and the tumor shrank and shrank and basically surrendered to Science!  About which: hooray.  So, no mastectomy after all — but a lumpectomy instead (also called a partial mastectomy).

And lumpectomies, as my oncologist puts it “come with radiation therapy.”‘

And I’m very much in favor of a lumpectomy instead of a mastectomy.  I usually prefer not cutting off parts of my body that don’t need to be cut off!  A quirk of mine, I admit.

However, the timing knocked WorldCon off the calendar.

I had the surgery on June 5.  One has to wait until one is completely healed before starting the radiation.  This usually takes four to six weeks.

I was hoping that I’d be one of those rare people who heal super-fast, and could be ready for radiation in three weeks, but — nope.  I’m two days shy of that three weeks, and I’ve still got swelling and fluid and all that stuff.  Could not possibly start radiation yet.  At least another week, if not more, to heal.

Then the radiation will be six weeks of daily sessions.  I just won’t be done in time.

So, I asked the programming committee to remove me from the program.

It’s disappointing, but in the grand scheme of things:  I win!  Because: successful chemo, successful surgery, no cancer left — Yeah, that’s definitely winning!

Just, no Worldcon.

However… just in case… I have held on to my membership (as a non-program, regular attending member), and I’m still going to pay for my portion of the hotel room Sabine and I were going to share.   Just in case, that is, the radiation oncologist inexplicably declares me done early (which almost never happens),  and I feel really great (instead of massively fatigued from the treatments, which is far more likely), and I am suddenly possessed of a what-the-hell attitude — if all those ifs magically came together at once, I could buy a last-minute plane ticket and show up as a plain old attending member, just a fan among fans.

That would be cool.

But practically impossible, really.

But just in case, I do still have my membership.

But it almost certainly won’t happen.

For those of you who were coming to Worldcon, and who were hoping to see me, meet me, or hang with me — I’m sorry, but I just can’t do it.

If you’re based in the States, you can catch me at Readercon — and I’m open to suggestions for other conventions in or after September, when the radiation will be over.

If you’re based in Great Britain or Europe — I’m currently looking for some other convention to hit on your side of the Atlantic, after the radiation.   Tina Monk has suggested Eastercon, April 3-6 2015.   Any other ideas?


Jun 15 2014

And the official pathology report says…


No cancer.


A month ago, I told you about the results of a biopsy of the original tumor site, and how it came back negative.  And we cheered and celebrated…

But that was just a biopsy — that was just whatever that big fat biopsy needle grabbed. As great as that news was, it only grabbed a little bit…

But this is the big one, the important final news.  This is the actual pathology results on the actual tissue that they took out of me — all of the original tumor area, plus some extra bits all around it in every dimension.

No cancer found.  None.

Check it out:


Click to enlarge, if you like...

Click to enlarge, if you like…


That first bit, the #1: that was the sentinel node (I described that procedure in my previous post), showing “negative for metastatic carcinoma”.  As in: no cancer there, so no reason to remove any other lymph nodes.

And item  #2: the tissue removed.  And it says in black and white: “No residual invasive carcinoma identified.”

Proof that we killed all that cancer.  As in, no surviving cancer.  (Yes, they still had to remove it.  We’re dragging the bodies off the battlefield.)

Also important: the phrase “Negative margins.”   When they remove tumors they also remove some tissue all around it, the “margins.”  This is done to be absolutely sure there’s no cancer left behind.  The margins are tested, and if cancer cells show up there, they have to go back and take out more.  So, it’s important to have clear margins.  I had clear margins.

(By the way, that other  phrase there, “Focal lobular carcinoma in-situ” — Don’t be concerned.  Despite the word “carcinoma,” lobular carcinoma in situ is not cancer.  It’s a pre-cancerous condition.  Here’s the Mayo Clinic’s explanation of it.  And here’s Wikipedia’s.  And my thanks to pal Mary Ann Eldred for clearing up my own confusion on it.)

So.  No cancer.  Otherwise known as pathologic complete response (or “cPR”).    This is considered a significant indicator of an excellent prognosis, especially with my type of cancer (HER2-Positive).

So, to recap:

No cancer.

Really good prognosis going forward.

It all looks… just great.

I’m sort of stunned…

When we met with the surgeon on Friday to get the pathology results, he smiled and held up the report for me to see.  After a while he said, “I’m waiting for the grin.”

It took me a while.   I read it, read it again. Blinked, and read it again.  Did an internal “Wait, what?”  Read it again.

“Still waiting for the grin,” the doc said.

“I’m grinning,” said Sabine.

“Not you.”

Eventually I said something like “Does that really say what I think it does?”  And yes it did.

And yes that is a pathologic complete result.

And yes, there is no cancer left.  And yes, and yes.

So.  That’s it.

Still to come: a few more weeks of healing from surgery, then about six weeks of five-times-a-week radiation therapy.   Also: continued Herceptin infusions every three weeks until next April.

But the big fight: it’s over, and the good guys won.

We got more champagne, even though it was only 11AM.  After some cheering and dancing around (on Sabine’s part), and wandering around with a dazed expression (on my part), and hugging and crying (on both our parts), we drank it all.


More good stuff.

More good stuff.


Jun 7 2014

Two days later


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.




Jun 6 2014

Quick update


Everything went swimmingly!  No surprises, I feel pretty good — just intermittently drowsy from the pain meds.

Like now… Naptime!

No worries, folks.

Jun 2 2014

Wait, what? Postponed AGAIN?


Yes, it’s true.  Surgery is postponed AGAIN.  Dammit!

This time it had nothing to do with me…  there was a mixup between my surgeon’s office and the surgical center.

There were three of us scheduled for surgery today; and three of us were waiting around in in the pre-op area, in various stages of getting ready for our various procedures… and around 7:30 AM the staff  started  looking at each other sidelong, going, “So…where is Dr. L?”

Someone from radiology came by at 8 and spoke to me, saying that even though my needle localization (which would not be done by my oncology surgeon, but another doc) was supposed to be at 8, they wanted to wait until Dr. L himself actually showed up. Because needle loc is no fun, and we don’t want to do it before we really need to.

Which was a good call on her part because:

The surgeon was on vacation.

Apparently, contrary to what everyone else thought, his vacation last week did not end on Friday.  Apparently, it continued into this week too.

I’m not angry, just frustrated.

Everyone was falling all over themselves to apologize, they were all so very sorry… And I know perfectly well how one small miscommunication can have a domino effect, and turn into big misunderstandings all around.  I blame no one!

Mind you, if they had gone ahead with the dreaded needle localization and then found out… yeah, you would have seen me mad.  I bless that person from radiology, who said, “I’m going to wait until I see the whites of his eyes.”

But I wanted this crap to be OVER WITH!  Dammit.  No sleep last night, no food, no water since 5AM.   Angst galore over the needle loc (which I would be awake for!), worry about the results of the sentinel node biopsy before the surgery, worry about the surgery..

All that angst, and then no payoff!  I get do to it all again!

Thursday.  We’re rescheduled for Thursday.

The only bright spot in all of this:

Remember that ticket to Night Vale Wednesday night, that I couldn’t give away?


I’m going to Night Vale.



Jun 2 2014

You are all so wonderful…


I want to thank all of you for the kind and encouraging comments and notes you’ve sent me, here and on Facebook, and by email.  I can’t reply to each one individually — there are too many!   But your concern and your good wishes mean a lot to me.  It’s amazing to me that so many of you care about me and my work.   Amazing, and heartening, and it helps me be brave.

Thanks again.


UPDATE:  Surgery was postponed again!   (see the latest blog post).

Jun 1 2014



Three groups:


1.  People who read this blog and (I assume) like my work.

2.People living within striking distance of New York City.

3. People who like Night Vale.

There are plenty of people who read this blog AND live in travel distance of New York.  I know many of them!

And lots and lots of people who live within a days travel of New York AND love Welcome to Night Vale.  Both shows that night are sold out.

I’m even aware of some people who read this blog, like my books, AND love Welcome to Night Vale (looking at you, Kate Nepveu!).

But someone who belongs to all three categories?   Apparently, approximately zero.

Oh, and one more hypothetical category, which Sabine suggested :

4. People who just won’t go to a live Night Vale show unless they can go to the show with their pal or significant other.

I call this a “hypothetical” category because Nigth Vale fans tend to be… devoted.   Taking myself as a mid-range example on the scale of Night Vale fandom, I would nevertheless be perfectly happy to attend alone, even if the person sitting next to me turned out be the devil himself.  Or worse… Steve Carlsberg. 

So between those three categories and the hypothetical fourth, it was always a possibility that no one at all would even try to win the tickets.

And that’s what happened!  Alas.

In other news: Big day tomorrow, of course.   At the hospital by 7AM, and probably home by 1PM, all sliced up, stitched up, and drugged up.  I shall sleep.  No, first I’ll eat something (no food after midnight tonight).  Then I’ll sleep.

Catch you on the flip side…