Jul 16 2014

Readercon weekend

Rosemary

My first actual out-and-about public appearance since — well, since the diagnosis in December.

Everyone was perfectly lovely to me.  Most people had heard about what’s been going on in my life, and were glad to see me, and welcoming.  And those who didn’t know me at all did not look askance at my odd hairdo.  Because that’s how we roll in SF/F.   I’ve given up wearing hats because: hair coming back in!  Plus: summer.  Hats are far too hot.

I did have some trouble with my energy levels.   I seem to have two settings: 1) Perfectly fine, let’s chat! 2) Okay, I go lie down now.  These alternate at apparently random intervals.

I skipped all the usual huge group dinners in favor of room service.    Because, even if I felt good at the start of the dinner, I might suddenly not — so I played it safe.

I only had the one panel, on why schools and the education experience show up so much in SF/F literature (with Greer Gilman, Lev Grossman, Faye Ringel, Delia Sherman, Rick Wilber).   I think I wasn’t my sharpest, having just fought my way through stop-and-go traffic on the Mass Pike, followed by more stop-and-go traffic  on route 95, arriving at the hotel exactly one hour before the panel, and discovering that valet parking was not an option in my case because the valet could not drive a manual shift car!  Which mine is.  Because I like it.  And all the nearby parking spots were taken — but after much explaining on my part, hotel security said that I could leave my car out front until after my panel.  Which was nice of them.

Oh, and my car’s air conditioning is broken.  Did I mention that?  Yeah.

So, I arrived already exhausted, and I feel I could have done much better on that panel…  I could have said quite a lot about the Steerswomen’s Academy, but didn’t quite have the nimbleness of mind to insert my counterpoints at the right moments.   Because, of course, the Steerswomen’s Academy is so very different from other school experiences presented in literature.

At the Meet the Schmoes Pros Party, James Patrick Kelly had the misfortune of being the first person I ran into.  Since I haven’t really seen many people other than Sabine and some close friends  for the last four months, I had to say All the Things!  Right Away!  Non-Stop!  He endured it bravely and graciously.   What a sweetie.    And of course, Ellen, and Delia, and Elaine Isaacs.  Oh, and Yves Meynard, who is such a dear.  And newly married!

And not to forget mad book collector and pal Michael Tallin, who lives on the opposite side of the country, and I only see at conventions.   His book-and-autograph fever often sends him to Readercon, and I get the pleasure of his conversation and company, without actually having to foot the bill for a flight to California!

It was lovely to be out in a social situation again, with people who are of My Tribe.

But it did wear me out.  I did not rush to get up the next day.   And rested often.

I managed to catch a couple of panels on Saturday.  When the Other Is You, where the panelists, all members of minorities or marginalized groups,  spoke of the difficulties and pitfalls in writing about their experiences.   (That was Chesya Burke, Samuel Delaney, Peter Dube, Mikki Kendall, Vendana Singh and Sabrina Vourvoulias.)  Later, I caught New Models of Masculinity,(Erik Amundsen, John Benson, Kameron Hurley, Catt Kingsgrave and Bart Leib)  wherein the panelists discussed the fact that SF/F too often uses the default cliche version of the manly man, and what are the other options?  And how does it operate in the real world today?  Fascinating.

I also caught great readings by Ellen Kushner, Delia Sherman, and Daryl Gregory.

There was no Kirk Poland Memorial Bad Science Fiction and Fantasy Competition — and that’s okay.  Kirk Poland was a brilliant, hilarious idea, and thrived for many years — but it has basically run its course, and is best retired.   We shall remember it fondly.  Time to do something else.

The something else was A Most Readerconnish Miscellany: readings, music, poetry, by all sorts of people, as part of a fundraiser for the Boston Area Rape Crisis Center, and Operation   Hammond, which teaches convention runners and volunteers about first aid, both worthy causes.   I arrived late, and left early, later discovering that I’d missed a performance by Ellen Kushner!  but I caught a vivid, rousing poetry recitation by C.S.E. Cooney.   I had heard her do “The Sea King’s Second Bride” in the past and was blown away; this time I arrived partway through her poem, which involved a woman, a double-bass, and the Devil.  It was awesome.

A reading by one of  the guests of honor, Andrea Hairston, also included a banjo-player who had put some of the song lyrics in Hairston’s work to actual music with actual banjo.  Excellent.

And Daniel Jose Older did an excerpt from his work — completely amazing.   A true performer and storyteller, with this brilliant, crazy urban edge. After his bit, I waved over the person collecting the donations and handed over forty bucks, because damn! I now have to run out and get everything available by Older.

Then my Kaffeeklatsch, which I think went well.  We merged the the other person klatsching, one Adrienne J. Odasso, a poet new to me.   I bought one of her chap-books, but haven’t delved into it yet…

Oh, look!  My indicator just flipped over from Perfectly Fine! to I Go Lie Down Now.  I shall do that, soon.

I do regret that I wasn’t able to meet & greet and hang with all the people I’d hoped to… but my on again/off again energy level kept me from being as social as I’d have liked, and from seeing as many panels as I wished I could have seen.  I passed people in the halls who I wanted to talk to, or hang with… but I just couldn’t do all I wanted.

So if I missed you, I do apologize (looking at you, Kate Nepveu!).

But I was so glad to finally get out into the real (as in SF/F fan and writers’) world again.

In other news: Radiation is going well. About which, more later.

 

 

 

 

 

 


Jul 8 2014

Hey, I got a tattoo!

Rosemary

Actually… I got four tattoos!

Actually… I didn’t so much get them, as have them given to me, willy-nilly…

Yep, they are the tattooed reference marks that the radiation therapists will use to make sure I’m absolutely correctly aligned when they zap me with their rays.  So they hit only what they want to hit, and not nearby other things like, say, my lungs and my heart.

Nothing cool about them, alas.   Merely four tiny dots, distinguishable from freckles only by the fact that they are a bluish black.  Not in locations that I care to display, generally.

We’re still in the prep phase, with a dry run tomorrow.  I feel like a NASA mission — all these lovely techno-nerds collaborating to get me launched!  It’s kind of cool.

I may be less enthusiastic down the line when the side-effects have built up, and I get the skin irritation and the fatigue.   It’ll be six weeks of daily radiation.  I’m sure the novelty will wear off quickly.

In other news:  Readercon this weekend.  I have exactly one panel, on Friday.   Which is not a bad thing, as I find I still do get suddenly tired, if I have to be out and about.  Oh, and a Kaffeeklatsch on Sunday!  That should be fun.  Other than that, I plan to soak myself in the brilliance and erudition of others, on their various panels.   And schmooze.

In other other news: two freaking hours on the phone with AT&T while they tried to figure out why the heck my new and DEARLY PURCHASED iPhone 5s 32 gig has no service.   With no result.   And then they promised me a callback.  And did not call back. Because eventually it became 10PM, when all AT&T customer service reps say goodnight.

 

 

 


Jul 5 2014

Visitor

Rosemary
No one I know...

No one I know…


Jul 5 2014

Whilst writing outside in the lovely leafy world which is my favorite thing to do.

Rosemary

Ah, I see.

He’s back.


Jul 3 2014

Before I forget: Interfictions Indiegogo — there’s still time to take part

Rosemary

The Indiegogo fundraiser for Interfiction Online (the online magazine of genre-bending, category-shattering and generally interstitial art) — I’ve mentioned them before — has met its original goal of $8500 with twelve days left in the campaign.   So now they’re heading for their stretch goal of $10,000, and you can help.

The purpose of the fundraiser is to allow them to pay their contributors a professional rate, and improve their site to include visual arts.   Paying authors and artists good rates for what they do is a goal of which I greatly approve!

So, I just went over there myself  and gave them some money.   There are various rewards for contributing, but the one I chose was $30, for which I get signed copies of their first two print anthologies, which sound delicious.

Ellen Kushner and Delia Sherman had actually asked that I donate something that they could use as one of the rewards — and I COMPLETELY FORGOT.  Largely, I think, because the conversation took place the day before my surgery.  After which for some time I was, let’s say, distracted and not at my sharpest.

Then the other day I saw that they had reached their goal.  Hooray! said I, and then: Wait, what?  So I dashed over and contributed actual money.

And now I’m telling you.

You can check out the website to see what you’d be supporting, and decide if you want to participate.  And you would get cool things, too!

In other news: I continue to improve.  I’m not up to full strength yet, but getting there.  Next stage: radiation therapy.   I’ll find out when that starts in the next few days.

 

 

 

 


Jun 24 2014

Well, about WorldCon in London…

Rosemary

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

Yep.

Dang.

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…

Rosemary

No cancer.

Seriously.

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

Rosemary

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

Rosemary

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?

Rosemary

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?

Yeah.

I’m going to Night Vale.

Ha!