Words Like Locusts Flew From Her Fingers

I am very happy to report to the very few of you who are still occasionally checking in here that I am, in fact, feeling pretty darned good these past couple of days — all things considered. Yes, I still have cancer. But, despite a rather unpleasant dehydration episode a few days ago that wound me up in the ER being pumped full of fluids, I’m doing pretty great now. Yay!

As evidence of just how fine I’m doing, I made banana bread this morning and that’s in the oven baking right now. It’s been many many years since I made banana bread. I hope it turns out.

Also, I took a bunch of pictures to document how nicely the garden is coming along this year. Also a few pictures of the inside of the house to show off our relatively recent redecoration effort. And the deck. To show off our new patio set, which is truly magnificent — as patio sets go. So, here we go!

New position for sofa and new artwork over the fireplace.

The new entertainment center with the new monster tv.

Looking towards the dining room and entry from the living room.

A view of the front door.

Another view of the patio furniture.

Outside the front door, I’ve got this Solomon’s Seal growing. Cool plant. The vine is jessamine — it’s never bloomed for me since I planted it about 8 or 9 years ago. At the base is a plain green hosta.

These hostas are only part way open they’ll completely cover the mulch when the come all the way open.

This is the super monster host. This thing will be about 3 feet tall and 3 feet in diameter when it’s completely up and open.

As usual, I have 4 earth boxes set up. One has nothing but peas, another has 3 kinds of pepper, the third has two kinds of tomato, and the fourth has an eggplant and 4 butternut squash vines. The squash is an experiment.

This earth box has peas planted in it. It’s looking like they’ll do well. I hope so! There’s nothing as good as fresh green peas.

The yellow flowers are called “Leopard’s Bane”.

The wire frames are set up to support the sweet peas I have planted at the base of them. I hope it works out as nicely as I envision it.

Two very comfortable chairs, a loveseat, and a coffee table. There are maple seeds all over everything.

One view of the back garden.

I forget the names of these flowers.

Here’s a new clematis I planted this spring. Pretty color.

The umbrella has little solar powered lights along the ribs and in a central light at top.

The view out the front door.

The view from the deck. The azaleas are blooming quite nicely.

Strider ignoring me.

For a long time, the only compelling argument I’ve been able to come up with for the existence of God (or gods) is my own deep need for finding someone to whom I can say thank you. Thank you for this beautiful planet. Thank you for the amazing forms of life that inhabit it. Thank you for giving me a mind that’s capable of noticing it all and of appreciating it. And of loving it.

I’ve so loved being alive.

People might say, oh Rebecca — you’re just being naively optimistic. Looking at the world through rose-colored glasses. You forget all about violence and poverty and random sorrow in the world.

But it’s not true that I’ve forgotten. It’s just that as terrible as things may be in some way, it’s not nearly enough to hide the magnificent beauty, the thrill of being alive.

I’m so grateful, and I’m not sure there’s anyone to thank. Maybe there doesn’t need to be.

Slate has been running a lot of articles about BDSM (bondage, dominance and submission, sadomasochism) lately. This one, linked below, is about how the American Psychiatric Association has apparently decided that getting off on hurting someone — or being hurt by someone — is only a mental illness if the person is unhappy about being turned on by it.

Sexual kinks in the DSM V: Paraphilic disorders describe unhappy kinksters. – Slate Magazine.

I usually think the APA has it together pretty well, but this time I believe they’ve got it completely wrong. It’s the people who are completely okay with sadomasochism that are the ones who are REALLY crazy. They’re sociopaths of some kind, maybe. If a person feels bad about this kind of kinkiness, at least they’re on the right track.

I’m not afraid to put it right out here in plain language: If you get turned on by hurting people or by being hurt, you are SICK. It’s not any kind of normal. And despite the frequent comparisons I’ve been seeing where BDSM is likened to being gay, they are nothing at all alike.

From the number of articles I’m seeing lately, it seems like there must be a lot of people who are into this “lifestyle”. That may not be true, though. Just because it’s getting a lot of press lately doesn’t mean it’s all that common. But, honestly, I just don’t know. If there are people I know who are reading this right now who are into BDSM type activities, I suppose I’m offending them with this blog entry. I don’t know that I’m sorry for that, though. I really and truly do believe it’s a mental illness to derive pleasure from inflicting (or receiving) pain.

The realization that she will not be afforded special dispensation from having to join the sagging and wrinkling masses in our journeys to the grave sends Wurtzel into a tailspin of anger at the world for failing her. “I am a free spirit. I do not know any other way to be,” she bemoans. “No one else seems to live as I do. In a world gone wrong, a pure heart is dangerous.”

via Elizabeth Wurtzel in New York Magazine: Confessional writing hits bottom.

This actually made me laugh out loud! Certainly, it’s common for teenagers and people in their early to mid-20s to engage in this sort of “I am so special! No one can truly understand my very special specialness!” sort of nonsense, but you really expect a person to be past it by the time they’re…let’s just check Ms Wurtzel’s age… oh dear, 45 years old!

Now I’m actually snickering.

You know….jeez. Honestly, it just gets kind of tiresome thinking and talking about my medical situation so let’s just agree to drop it all for the time being, okay? If something dramatic happens, I’ll let you know. Otherwise, you can just assume that I’m gradually improving. Okay? Does that work for all of you?

It does? Excellent.

Here’s a picture I took of myself this morning. As you can see, my hair is growing back. It’s in a really fairly cool funky style right now. My neighbor ladies are both envious of me. They’ve been trying to get their hair to do something similar and mine just does it by itself. This isn’t really the best picture. My hair color has turned a fairly nice silvery shade.

My darling doggie bit my finger by accident this morning. I was handing him his “ball of insanity” and he got a bit over-enthused about grabbing it. Ouchie! There was blood. He’s currently down in the basement with it, chasing it back and forth around the flute studio, barking like a lunatic. Hey, to each his own. He’s crazy for that ball. See, the thing with it is that it’s too big for him to fit his jaws around it and it’s a hard plastic so he can’t get a grip on it with his teeth. All he can do is push it around the floor with his nose.

So, that’s the big news for me. A bit finger! It’s relatively minor and should heal up easily.

On a more prosaic turn, I’m taking the dog for more short walks these days, thus building up a bit more strength. Also, I’m feeling inclined to do a bit of gardening — which seems to be a step in the right direction. In fact, it’s nice out today, so perhaps I ought to just go do that.

Quite a few of you have scolded me for being so slow to update my blog. I’m sorry! My excuse (or, at least, my explanation) is that so little changes from day to day that I don’t really feel like I have much to report. I am gradually improving, but it’s a slow thing. Let’s see… I was in the hospital for just short of a month. I’ve been home for nearly 3 weeks. Although it continues to drain, the fistula does seem to be slowing down and is behaving as though it’s closing up. The smaller abscess that was in my navel is nearly healed and only needs a tiny amount of packing with a bandaid every few days. Last time I was at NIH, almost 2 weeks ago, I met with the pain doctor and he adjusted my medications so I’ve got really good control. My guts still aren’t working especially well, but that seems to be gradually improving, too, so…

I guess, all things considered, my condition has improved pretty significantly.

So, enough whining I guess.

My sister was here for my first two weeks out of the hospital and it was REALLY nice. She’s an exceptional cook so I was very well fed. Mark, too, benefited from her cooking skills — she made him several different kinds of roast beast with gravy and mashed potatoes. His favorite meal! She is also a registered nurse, so she monitored my condition and helped with “wound care” in taking care of my fistula and abscess. I got massages with hand-made lavender-scented oils and lotions. And we watched a bunch of Twilight Zone episodes on Netflix. It was just really nice and comforting and a great experience spending time with her.

I don’t know that there’s much more to report. I haven’t been leaving the house yet much. Mark’s taking good care of me. My appetite still needs some work, but at least I’m not losing any weight.

Anyway…that’s what’s happening with me. I’m getting better — slowly — and am really looking forward to being well enough to resume more of my normal activities. I still hope to vacation in Minnesota this fall. I’ll try to do better about keeping you updated.

Thanks for caring.

Greetings, sports fans!

Okay, maybe not sports fans, but at the very least people who are interested in what’s going on with me. Thanks for caring. Sorry I’ve been slow in updating here.

I did, in fact, get out of the hospital this past Friday and I’m comfortably ensconced on the sofa for most of the daylight hours. My sister arrived on Sunday and has been taking wonderful care of me. She’s a fantastic cook, gives wonderful massages, and is just such a comfort to have here.

Overall, I’m doing okay. I had kind of a rough morning today — lots of cramping and gut pain with nausea. It’s because my intestines are starting to work more, which is good. Happily, I’ve got good pain drugs. Hurray for phenergan and morphine!

I don’t remember how much information I’ve given you about my fistula. I’ve actually got two things going on. A small leak from my navel that’s probably connected subdermally to the main fistula. I’ve got a “wound vac” on that. Then I’ve got the fistula itself, which is maybe an inch and a half long and is about an inch below my navel. The fistula is from my colon to the outside world, so it’s being treated like a really badly placed colostomy. I’ve got a pouch system on that. It’s draining less and less, so that’s a good sign that it is (we hope) healing. My doctor said that colon fistulas usually heal on their own, so… fingers crossed.

What else? Not much… this is the time of just gradually healing and gradually getting stronger. Not too exciting. We’ve been watching lots of streaming NetFlix during the day — Ancient Aliens! — to pass the time.

Rebecca is coming home tomorrow from NIH and doesn’t go back until next Friday to be seen by the surgeons again. The dog and cats can’t wait to see her.

Today was a busy day spent learning about the “wound vac” and the “ostomy pouching system”. The “wound vac” is a pretty nifty piece of gadgetry. It hooks up to one of the holes in her abdomen and sucks goo out. It plugs ever so neatly into the hole, and has a tube connecting it to a AC/DC powered mini vacuum system. In addition to the negative pressure which sucks goo out, the negative pressure is supposed to help encourage wound healing by helping to pull things together.

The “ostomy pouching system” goes over the other hole. It’s not as cool as the “wound vac”. It would be VERY neat if they could use a “wound vac” on this hole too, but they can’t since the hole connects directly to her intestines. Unlike the “wound vac”, which goes right into the hole, one has to tape and paste a drain into place that coves the hole, and dumps into a pouch. It is very much like putting together plastic PVC piping for a plumbing system. You even apply “caulking” to help make sure it doesn’t leak!

Painwise she’s a bit uncomfortable, but the pain meds seem to be working- long release morphine in the am and pm, with fast acting morphine for breakthrough. If you refer back to last years post on July 19, 2011 (its hard to believe that a year has gone by since the last surgery) shes between a “3″ and a “4″ on the 0 to 10 scale. In real world terms this is somewhere between “3: This is distressing. I don’t want this to be happening to me at all” and “4: My pain is not fucking around.” She’s working on giving up on the “Minnesota Stoicism”, and actually using the prescribed drugs BEFORE things start to go “ouwieee”, but she isn’t quite there yet and is always playing catch-up.

She’s walking very well though, we lapped the ward 5 times today. Not ready for the Marine Corp Marathon yet, but something to work on. .

Food wise she’s on a full diet, but low residue, since things aren’t taking the long route, but taking the shortcut. We don’t want to get residue stuck in the hole. She has a new “mantra” when eating. Think of Monty Python and “Spam”, but substitute “Protein” for “Spam”.

The SPAM Skit
************************************
Interior: cheap café. All the customers are Vikings. Mr and Mrs Bun enter—downwards (on wires).

Mr. Bun:
Morning.
Waitress:
Morning.
Mr. Bun:
What have you got, then?
Waitress:
Well there’s egg and bacon; egg, sausage and bacon; egg and spam; egg, bacon and spam; egg, bacon, sausage and spam; spam, bacon, sausage and spam; spam, egg, spam, spam, bacon and spam; spam, spam, spam, egg and spam; spam, spam, spam, spam, spam, spam, baked beans, spam, spam, spam and spam; or lobster thermidor aux crevettes, with a mornay sauce garnished with truffle paté, brandy and a fried egg on top and spam.
Mrs. Bun:
Have you got anything without spam in it?
Waitress:
Well, there’s spam, egg, sausage and spam. That’s not got MUCH spam in it.
Mrs. Bun:
I don’t want ANY spam.
Mr. Bun:
Why can’t she have egg, bacon, spam and sausage?
Mrs. Bun:
That’s got spam in it!
Mr. Bun:
Not as much as spam, egg, sausage and spam.
Mrs. Bun:
Look, could I have egg, bacon, spam and sausage, without the spam.
Waitress:
Uuuuuuggggh!
Mrs Bun:
What d’you mean, uugggh! I don’t like spam.
Vikings:
(singing) Spam, spam, spam, spam, spam … spam, spam, spam, spam … lovely spam, wonderful spam …

(Brief shot of a Viking ship)

Waitress:
Shut up. Shut up! Shut up! You can’t have egg, bacon, spam and sausage without the spam.
Mrs. Bun:
Why not?
Waitress:
No, it wouldn’t be egg, bacon, spam and sausage, would it?
Mrs. Bun:
I don’t like spam!
Mr. Bun:
Don’t make a fuss, dear. I’ll have your spam. I love it. I’m having spam, spam, spam, spam, spam …
Vikings:
(singing) Spam, spam, spam, spam …
Mr. Bun:
… baked beans, spam, spam and spam.
Waitress:
Baked beans are off.
Mr. Bun:
Well can I have spam instead?
Waitress:
You mean spam, spam, spam, spam, spam, spam, spam, spam, spam, spam?
Vikings:
(still singing) Spam, spam, spam, spam … (etc.)
Mr. Bun:
Yes.
Waitress:
Arrggh!
Vikings:
… lovely spam, wonderful spam.
Waitress:
Shut up! Shut up!

(The Vikings shut up momentarily. Enter the Hungarian.)

Hungarian:
Great boobies honeybun, my lower intestine is full of spam, egg, spam, bacon, spam, tomato, spam …
Vikings:
(Singing) Spam, spam, spam, spam …

(A policeman rushes in and bundles the Hungarian out.)

Hungarian:
(As he leaves) My nipples explode …

(Cut to an historian) Caption, super. “A HISTORIAN”

Historian:
Another great Viking victory was at the Green Midget café at Bromley. Once again the Viking strategy was the same. They sailed from these fiords here, (indicating map with arrows on it) assembled at Trondheim and waited for the strong north-easterly winds to blow their oaken galleys to England whence they sailed on May 23rd. Once in Bromley they assembled at the Green Midget café and spam selecting a spam particular spam item from the spam menu would spam, spam, spam, spam, spam …
Vikings:
(singing) Spam, spam, spam, spam, spam, lovely spam, wonderful spam. Lovely spam, wonderful spam …
***********************************************

Yes, Spam theoretically contains protein,- a canned precooked meat product made by the Hormel Foods Corporation,consisting of chopped pork shoulder meat, with ham meat added, salt, water, modified potato starch as a binder, and sodium nitrite as a preservative. Spam’s gelatinous glaze, or aspic, forms from the cooling of meat stock. I’m not so sure though….

I want to thank everyone for their kind thoughts and prayers. They were very much appreciated. It’s time for a minor “cancer holiday” while she heals from this last round before we figure out what the next step is in this rather unexpected journey.

I am sure that Rebecca would like to see everyone, but it would be good to call first and make sure she’s up to it, and that no one is doing strange things to her, before stopping by. If a “strange” voice answers the phone, not to worry. Valerie, Rebecca’s older sister, is coming to help out for a while.

The Beat Goes On, the beat goes on, drums keep pounding a rhythm to the brain, la-di-la-di-dah, la-di-la-di-di! (It’s the Dilaudid, must be.) So, it is now appearing most likely that I’ve got a fistula involving my small intestine, my surgical incision, and surprise! my navel. Though, the the stuff coming from my navel is most likely just coming from another part of the surgical incision and may just be a sub-dermal pathway between the main fistula and the outside world.

Tomorrow morning (today, really, since it’s about 2:30 am right now) I’m going to have a CT scan. After that, they’ll decide what to do next. Probably surgery. Tomorrow — the surgery would probably be tomorrow, too, but who knows.

They’ve started me on IV antibiotics but, thank goodness, I don’t seem to have any kind of major infection going on.

Obviously, I am no longer scheduled to go home on Tuesday. Bummer. I’m awfully glad I’m at such a good hospital, though. One of the many very cool things about being at NIH is that, because there’s no insurance company involved, the doctors don’t have to feel rushed to get you out the door. If they think you need to stay inpatient longer, you just get to stay. Same sort of thing with tests of various sorts. They don’t need to justify them to anyone (except for their fellow medical higher-ups), so you get pretty much whatever might be useful.

They’ve got my (two now) wounds covered by these very helpful drainage pouches now, so that’s reducing the mess by quite a bit.

I’m so glad that all of this stuff has pretty much been happening sequentially, instead of simultaneously. Can you imagine if I’d still been in the severe nausea phase and was having the fistula at the same time, for example? That would have been awful. At least, by having one thing happen after another, I get a little pause for a mental re-set with each new problem.

If I were less of a Pollyanna-like person, I might be starting to get bummed out by these setbacks. I guess it’s not too surprising, considering the other complications I’ve had that have left me in a weakened state, but damn… It’s now looking unlikely that I will be going home on Tuesday. At best, it would be later in the week. My abscess is continuing to drain big-time and shows no signs of closing up on its own. The weekend attending doc (Dr. M.) says there’s a good chance that Dr. P. will want to install a Wound Vac on this thing. This will apparently involve a brief trip to the OR with anesthesia, a good cleaning and thorough examination of the abscess just to be sure my small bowel isn’t involved. Then they make the opening a little bigger, clean up the edges, and install the vac. Its job is to suck the goo out of the abscess and help it close up. A couple of nurses have told me that Wound Vacs work really well, so… that’s something to be optimistic about.

On the up side, my pain regimen is still working quite well and I’m still eating pretty well. (But not pooping in a couple days — which makes us wonder about the bowel).

Sigh… this is very tiring. But I remain optimistic that they WILL get this thing under control, it will eventually heal, and I’m going to have some time of feeling relatively normal before we take the next step (whatever that will be) on this journey.