My Younger Sister Has IT

Silent But Deadly

No, I'm not talking about cancer. I'm talking about farts.

Sister came home this morning. First day or so after the operation was very tough. As anybody who has had any sort of abdominal surgery can tell you, the bowels can take a while to get started up again after the doctors have been screwing around in there.

Your bowels are a very independent sort. They don't like to be told what to do. You can't make them do what they don't want to do. Bowels are like cats. If you want to persuade them to do something, you have to think like a cat. Or, you know, your bowels.

The first day or so, my sister was being doubled over by terrible gas pains. But things are moving along now. She is developing a specialty in the field of Silent But Deadly. A PhD in SBD.

We are not out of the fart woods yet, but we are making progress. I guess somebody somewhere figured out how to think like my sister's bowels, and so things are easing a bit.

The Wide Wide World Of Cancer

This post will be time-stamped about 8:00am EST. Here in San Francisco, it's actually about 5:00am. I estimate my body-clock is somewhere around PIttsburgh.

I went to bed (and almost immediate sleep) at about 9pm PST and slept soundly until about 4am. Feel pretty good right at the moment, all is quiet around the place. I love the smell of silence in the morning.

I still feel triumphant from the events of yesterday, even though that feeling is tempered by the knowledge that there almost certainly is more work to do. It is cancer. We would have to be extraordinarily lucky to have it turn out a successful surgery ended this sordid little affair. In fact, personally, I don't believe for a moment that it did.

But since this is cancer, you have to take your triumphs, large or small, whenever and however and wherever you can find them. So yesterday was a good day. Today will be a good day.

With luck, tomorrow will be a good day too.

Or, maybe not.

Welcome to the Wide Wide World of Cancer, which isn't too different from any other world you live in, of course, except in the Wide Wide World of Cancer they can give you an actual scientific name for whatever happens to be killing you or your loved one at the moment.

Never forget that you, too, at every moment, are dying. This is a handy way to keep reminding yourself you are alive.

You're Never Out Of The Woods, But You Might Be In A Clearing

We just got finished speaking with Dr. X, the surgeon.

She was very pleased with the surgery itself. She was able to take all of the lymph nodes that were either affected by the cancer, or otherwise seemed inflamed. Because of this, they were able to get by without the interoperational radiation they thought they might have to do.

The lymph nodes she took are being sent for biopsy to determine if the inflammation is, in fact, due to the presence of the cancer (which Dr. X seems convinced is the case with regard to at least some of the nodes) or if they were simply inflamed for some other reason. Those biopsies will come back maybe Monday or Tuesday.

But we had a pretty damned good day, in my view, all things considered. There are no macroscopically affected lymph nodes in my sister anymore. The tumor is gone. Along with my sister's uterus and ovaries and maybe a few other parts, I'm not sure. And my sister, according to Dr. X, tolerated the surgery well and should have a pretty easy time recovering from it.

But, you know, it's cancer. We don't know what happens next. There will probably be more treatments of one sort or another. As I say, I don't think we can ever say we are out of the woods... but for today, let's give ourselves and my sister some credit... it looks like we found a clearing we can stand around in for a while. So let's enjoy whatever little bit of sunshine we can gather, while we may.

The Big Day

Arrived at my sister's place last night about 11pm PST. Up this morning 4am, on the road at 4:30am down to Palo Alto. Two hours of admitting, pre-op waiting, etc. 7:30am Rob and I waved good-bye to my sister as they took her off to the Main OR. She is, apparently, this morning, the Main Attraction at Stanford Hospital.

Dr. X, the surgeon, tells us she may be out to speak to us in "a couple of hours". So maybe 9:30 - 10am. There is some possibility they will do some direct lymph node radiation while they have my sister open which could add another hour to the surgery, but Dr. X will be able to speak to us before then, I think.

Probably we will get to see my sister in her room sometime around 12:30 - 1pm.

More news later, as it comes in...

UPDATE (9:33am pst): They have a great system here of keeping the families informed... they have a kind of flat-screen TV reader board where you can keep track of where your patient is in the surgery process. Speaking very generally, of course. Start time. Estimated "close" time, etc. Got kind of a late start (8:32am)... estimated "close": apprx 10:30am.

Aboard Virgin America Flight 27

Okay. On my way to San Francisco. Should arrive b/w 9:45-10:15 PST. Got a late start but guess we've got a hell of a tailwind tonight...

See: Road, Getting The Show On The

Yikes. The surgery has now been scheduled for the 18th, one day earlier. In fact, they told my sister it had been moved to the 17th but she told them no way... too many people had made arrangements (me, for example) to not get there until late on the 17th or on the 18th.

So I guess we're not screwing around, people. Here we go. Knock on wood, he said woo-woo superstitiously.

A Still More Glorious Dawn Awaits

I meant to get to this yesterday, but ran out of time. November 7 has been declared "Carl Sagan Day". Yesterday would have been his 75th birthday. And so I link here to a thing that makes me cry.

Have you seen this video/musical tribute to Sagan? It's a re-mix of some stuff from the amazing "Cosmos" series that Sagan hosted, when, back in the 70s, maybe?

I don't believe in god. I don't believe in an afterlife either. But sometimes I fantasize that when we die our consciousnesses travel out into the Cosmos and spend eternity just... exploring.

I'll probably comfort myself with that fantasy when my time comes. What the hell? That and a Starbucks Vanilla Latte will cost me about five bucks.

I imagine that if my fantasy turns out to be true, it will go something like this:

If you want to put that on your mobile music device, you can download the .mp4 right here.

Waiting and Seeing

Two meetings this week. One with Dr. X, the oncologist, and Dr. Y, the radiology guy. Yeah, they are pretty sure there is nearby lymph node involvement but, again, they won't be absolutely sure until the surgery. The surgery is still on schedule for November 19. I'm heading out there on the 17th. My sister says she will be out of the hospital on the 24th or 25th, so she'll be back at her place for Thanksgiving. She hopes she can eat turkey.

The plan now is to "wait and see", which means we'll get a better picture from the surgery, and then we'll see about how to proceed from there, but there is no plan at this point to send my sister back into chemo and/or radiation as soon as possible after she has recovered from surgery.

My sister is nearly ecstatic about this. She wanted a break desperately which I certainly understand. Me, I'm nervous. I want to be as aggressive as possible but Dr. X says there is no data to support any approach but a "wait and see" strategy at the moment. Well, I purport to be a science guy so this information does, in fact, put my mind a bit more at ease. I understand it is only my primitive reptilian brain that wants to keep battering my sister's poor body. If the science says "wait and see", then I am willing to "wait and see".

Questions persist, though. For example, the fact that there is no data to support anything other than "wait and see"... does that mean we've had it and doing anything now won't make any difference anyway, or does it mean we have data from both approaches, "wait and see" and aggressive, and the outcome seems to be the same in both? In which case, I nervously ask, what are those outcomes? Good? Bad? If in between (which must be the case), what are the percentages?

But overall, since my sister needs a break and the doctor thinks that's the best approach, then that's what I think too. I just decided to think that and so now that's what I'm going to think.

A bunch of us are starting to put together a fund-raising project to help my sister with living expenses which are becoming a problem because she is unable to do her regular work. If it works and we make some real progress with it, this would be a great relief.

When You Hear The Dreaded Words...

... it's funny... not funny ha-ha funny of course. I mean, it's odd. You sort of think to yourself, "Oh, well, I was thinking that was probably the case anyway." So, you accept them.

"There may be lymph node involvement."

I find this out belatedly, and sort of by accident, which makes me a little angry. But never mind. There are plenty of other things to be angry about, so I'll let this one slide.

My sister met with her doctor Saturday morning. They discussed the situation. The results of the infamous scan were "suggestive of lymph node involvement". We thought this was the case at the beginning, then we didn't think it was the case, and now we again think it might be the case.

Me? Personally? I don't think I ever stopped thinking this might be the case, but there was one other disturbing set of words the doctor used: she isn't sure she will be able to get it all during the surgery. Okay, that I wasn't expecting to hear. It's a frightening thought, at first, but I guess all it really means is that the surgery won't mark the end of this.

But did I really think it would, anyway? I don't think so. I hoped we would be lucky and that the surgery would end it, but I also thought that for the rest of my sister's life we were all going to be scared to death every time she went in for a routine check-up. That's just the way it's going to be from now on. That's all. You just have to accept that and go on. And it's not like all the rest of us aren't, essentially, in the same position. We're just too skilled at ignoring the fact that we all got it coming, sooner or later, to get ourselves worked up each time we go in for a check-up.

I think my sister was the one who had most convinced herself that the surgery would be the end of this misadventure, and I think she is having a great deal of trouble accepting the probable fact that the surgery won't be the end of it.

Again. Nothing to be done. We all just have to find a way within ourselves to cope, is all.

Like, you know, we're the first human beings on the face of the planet who've ever had to remind themselves of that fact...

Yeah, Okay, My Bad

So I received an email yesterday from a friend saying she had been checking this blog and was worried about my sister's situation because I hadn't posted anything in so long. This was the kick in the ass I needed to make me think about and address this issue. So, in line with my new resolution regarding posting to this blog (see below), I'm going to make this easy for myself and just post a portion of the email I sent her in reply:

Yeah, the blog... the truth is that the whole notion of posting to it became somehow terribly oppressive to me. Your email made me think about that for a bit and I realized that what I was doing was spending too much time each day thinking about what I was going to post and what I needed to do to make it good. This necessitated me thinking way too much than I could emotionally afford about the Whole Situation every day. So, I just stopped thinking about it [the blog], as self-preservation, which had the knock-on effect of me stopping posting too.

But this morning I realize I don't have to operate the thing that way. I could just use the blog the way it *should* be used... just to keep people who are interested updated. I don't have to spend time thinking about how to "post well". I just need to provide news as I get it. (Which is another issue... my sister has somewhat the same aversion I have to thinking about it Too Much so sometimes it is hard to get news out of her... more frustration for me... but never mind.)

So I will post briefly to it again today and try to just "post easily" as news comes in.

But, briefly, she leaves the hospital this morning after what we hope will be her final chemo week at least until after the operation. She had a slight issue with a tiny clot around her PICC line which briefly threatened to delay the operation (currently still scheduled for Nov 19), but that seems to have resolved itself to the satisfaction of the doctors.

But as I told my sister... we have already learned that we have to remain fast on our feet, ready to go left or right on a dime should circumstances warrant it. All we can really say is: "This is the way things stand today."