Pointsman

Sometimes you feel like posting...

2006-04-23T14:14:00.000-04:00

Somedays you know you should. Like when Dorothy reminded me I had not posted since before Easter.

All I can say is it's been a busy week, with social workers, VNAs, spiritual care people, friends coming to walk Vix (hi, Lynne and Abby!).

But let's see, I had my first consult re: hyperbaric treatment this week. Took 3 hours (!) but the exchange of info was useful. Basically, they know they have something useful in hyberbaric, they just don't know ALL the uses yet. Yes, the increased bloodflow can be a good thing -- if it doesn't increase vascularization to what exists of the remaining tumor, making it grow. That would be a bad thing. But investigating this is a long process. And I think Dr. Rocket wants to be part of it, so I am going to email Joe about that. and IF we do the process...a big IF, it don't start til June, after our trip to Madison.

Before I get into that, though, I want to point out that we're going to see how the Termadore does, and make our decision based a lot on that, though I want to remind people I have had great response to all chemo in the past.

Anyway, for Madison! We're renting an accessible mini-van! So I will be comfortable, and able to swing out as necessary. This is huge! It makes me look forward to the trip. And Elaine, M's mom, is likely coming with us. Stay tuned!

Some days are better/rough/different than others...

2006-04-14T16:35:00.000-04:00

Well, some days are better than others. We got a new, light-weight chair today which has swappable arms that make work a lot easier... but the seat seems less substantial, it's lighter, making transfers skitsier... You can imagine. The other truly excellent thing about this chair is that it has raisable leg rests, which should cut down on the foot swelling. There is much to love about this chair, and maybe the PT can teach us how to work it to truly love it. I suspect she can. We had an OT here this AM, and she was really lovely and brought us wonderful things so I can pick up stuff, and move my legs and all. But her methods were not as useful as those we went through with Cathy, the PT. Every nurse and PT we have seen has endorsed the methods we're using and helped us fine-tune them. Barbara, the OT, wanted us to try new methods and maybe I'm just a scaredy cat, but the "old" methods are as fast and efficient, seems to me.

Then there is the work front. I'm considering a ms on acting and spirituality. Seems to me when an editor shows enough interest to make comments on your intro, you make at least some of the changes before sending it back? But I got 2 versions of the same file, no changes. Fine, they went off to the readers like that.

And then there is the spiritual book on writing/performing monologues that needs to be more teaching, less preaching. It's bought and scheduled, and I am hoping she is listening to what I say about changes, because it will make for a better, more concise book, without losing the valuable material.

Besides the fact that everyone from outside the office is surprised I am trying to work full time....

Vixen is doing well; she is wonderful! I have someone coming in from the office three times a week to walk her. Lynne has taken one of Mary's classes, so she is about the only person I trust to walk my little girl. That will be different when Sue and Shirley visit, as they so kindly have said they will. Of course I trust either of them with Vix -- they've both taught her!

Anyway, Easter promises to be quiet. My sisters are coming up to pot the roses I bought and bring a clematis that we requested. It should be quite nice!

We Have A Ramp!!!

2006-04-06T10:57:00.000-04:00

Not the spring time vegetable, though I imagine it’s available at the Golden Harvest or Fresh Markets.

No, the wheelchair accessible type. The temporary kind you don’t need a freaking permit for. Steve (friend from work) and Brett (husband of friend from work) installed it yesterday and as unlovely as the weather was -- it was SNOWING!! -- we went outside to test it out. It works fantastically well. Today we may even amble over to the Masonic lot, on the corner, with the dog.

I can also now make a cup of tea on my own. Unlock and lock the back door. Load the dishwasher, but not unload it... Mobility and functionality come slowly, but they are coming.

Next week I have a meeting with the hyperbaric specialist. Dr. B had never heard of hyperbaric treatment for necrosis, but he was on the phone right away with the local specialist, and their office didn’t seem too surprised as to what was bringing me in. Fingers crossed,eh?

Rookie Stripe from Hell!!!!

2006-04-03T15:57:00.000-04:00

So, I got the wheels moving, as it were, on getting my new motorized wheelchair. My friend Steve, who has done such great work here for us, is threatening to bring over a roll of yellow tape, so I will be an official dangerous rookie. I am threatening to dragoon my 2 male friends who play golf into teaching me (No. No plaid pants. One has to draw the line somewhere.). Vixen will soon be emulating all those little dogs who live at the Margeson, pulling 300 lb guys in their chairs -- or looking as though they do, for all they are Jack Russells. Looks pretty funny, but those dogs get their exercise!

The chair I have my eye on, like I have never looked at a car, is a Nutron R51XLP. I hope it comes in colors other than Junior’s, Jimmie Johnson’s, or whoever is driving the Jack Daniels car, but the JD is more in my line IF they don’t have orange (Tony Stewart) or brown (Mr. Dale Jarrett himself). Suppose I could have the body painted... :-)

And so do I. The PTs I have seen have shown me various smart, low-impact exercises to do to keep the upper body strength good, and to work on the lower body strength.

Melissa went out and rented a temporary ramp this afternoon.

Emotionally -- pretty good. Can move the left foot sometimes without hauling on it. Stood at the kitchen sink for 15 seconds today, which felt awfully good!

Vixen is getting used to things. She cannot yet jump onto the bed, because the floor of the bedroom is now wooden, and she can’t get a purchase and in fact hurt her leg the one time she tried it -- but that is how smart she is, she tried it only once. Now she sleeps next to my bed and moves when necessary.

Cute nature note: I am working in the dining room, and we have a feeder outside the windows. Well, in addition to the chickadees, sparrows, cardinals, and junco, we now, since yesterday, have a chipmunk. Oh, and a dyspeptic looking squirrel, about the first I’ve seen this year. The chipmunk shares with the birds. He also eats enough that his little cheeks puff up with food so he can’t get into the feeding slots. Way too much fun watching nature when I should be -- and AM -- working!

Ok. Where are we?

2006-03-22T18:11:00.000-05:00

More specifically, where's my foot? Is it on the ground? Is it flat, pointing the right way?

This is the most frustrating thing. A week ago I managed with a cane. I now slowly get round with a 3-sided walker. It is in its way, as our friend Stephe said, kind of like a stroke, given the relative suddenness with which it happened. It being the loss of mobility. On Monday, I agreed to get a commode and yes I can now say that without blushing. Coming downstairs Tuesday was tricky, but that was all. Going upstairs last night was hell. Coming down this morning was worse -- we shall be sleeping on the sleep sofa down here til our friends come in and move the bedroom from upstairs to downstairs... the bathroom and kitchen are on the first floor, you see. So Melissa gets to decorate our old bedroom as her office... one understands it is going to be a grotto of some sort. Strange to think it's going to be hard to see. Me, I'm in charge of the new bedroom, which I call modified club. No, not dark wood panelling, but many different horse photos, some by Barbara, some found here and there. Two ornate bookcases from an unfinished furniture store will act as headboard and night stands. Reading light will be better -- though there are no inset light fixtures there, we can add lamps as necessary.

Did you know -- you probably did -- there are special chairs for people who cycle? Play tennis? Rugby? All of the above? I've even seen paralympic curling! But this could clear up, too, one neurology report says it might well. But damn it, I might as well have fun despite it all.

I'll miss my old office upstairs. You see, we live in a Cape, and my office was a weird little space. Everything down here is so four square. But I'm here, Melissa is here, Vixen, Trouble, Tenzing, Grendel, and Floyd are here, my horse pictures are here, and my friends are here. It's just -- frustrating.

Back on the Ste-roids Again...

2006-03-18T12:36:00.000-05:00

Or, "My Appetite is Back and There's Gonna Be Trouble...."

So. Ever since I tumped over, you may recall, I've been feeling uncertain on my legs. Got worse middle of last week when my left foot went numb. Monday went to the doctor. Wednesday morning had an MRI -- only 2 days before my scheduled one.

Propriaception -- the brain doesn't know where my left foot is. Cause -- likely radiation necrosis.

Jeezums, here we go again! I now have a cane and a walker -- I may be getting a better, luxe model of walker if my insurance approves. I am probably going to temporarily move my office space in work to the first floor. The bathrooms and the kitchen are all on the first floor, damn it.

It could get worse. It could stabilize. It could, according to one study in the neurology journal, get better. According to it, onset of symptoms is severe and abrupt, and then they can go away again. May take 18 months... may not. May not get better. But the cerebellum is a balance center, not a cognitive one. Which means my ability to do the Monday and Tuesday NY Times crosswords should not be impaired.

Owning a herding dog, however.... this could be a battle of wits in any event! Luckily, Vix is listening to Melissa, whom she (Vixen) has never viewed as an alpha and who (Vix) I think needs a refresher course.

My mood is not the best, as you can imagine. But

Words, words, and #$@!^%

2006-03-14T14:55:00.000-05:00

One of my pleasures -- and it has real science content, so I won't call it a guilty pleasure -- is Mythbusters. Recently, they opted to investigate various myths connected with flatulence. This could lead to a riot of improper or only marginally proper language, but our boys, Jamie and Adam, too the high road, consistently using the word "flatus" to describe the, umm, produce of flatulence.

Somehow, my post on the great gelding (which word will probably bring nothing as the commenter probably needs to look up what it means) generated seven posts of sexual/scatalogical phrases.

Thanks to a friend, I have been made aware of these in quick order and deleted them. But for now, I am screening comments. And while I am aware such -- flatus -- is probably generated text, whoever is posting it need not sit their wracking his brain for such phrases.

For the rest of you who have been nothing but intelligent, clever, kind, supportive, I do apologize, but you shouldn't notice much difference.

Birthday wishes -- whether he wants them or not.

2006-03-09T10:08:00.000-05:00

I have seen his face, in person, exactly once. That was in November of 2004. It was late on a Sunday afternoon. The place would be closing in an hour or so. Formal programs were over for the day. We stood in the aisle, just enjoying being there. I paid my respects to the greatest of the great ones, and then just hung out by my favorite.

Then Tammy forgot the mint.

We had been at the Kentucky Horse Park that morning, before we were due at our friend Jeanne's, to visit the grand ladies of the Our Mims Retirement Haven. It was a muddy series of days, and Mr. John Henry had taken full advantage of the fact and had gotten himself good and mudded up, well up the legs. Seemed kinda pleased with himself, too. We got to see Tammy start to work on him, but then had to beetle off to keep our appointment with Jeanne.

When we returned... John Henry still had a deal of mud on him. Typical human strategy -- let the stuff dry, first. That was what Tammy had done and it enabled her to get all -- pr most -- of the remaining mud off. She went back to the tack room to return the brush. And forgot to come out with John Henry's mint.

Mr. John Henry is not shy. Wham! Wham! He would bang his left front hoof against the door of the stall. Wham! "Woman! TAMMY! Where's m'damn mint?" Wham!

The mint came quickly. But the benefit for us was that we got to see more of Mr. Henry than just his shaggy butt in the corner of his stall! And he got his mint.

Today, March 9, 2006, I would like to wish John Henry a very happy 31st birthday!

Click here to see John Henry's race record and pedigree.

So there I was...

2006-03-07T12:26:00.000-05:00

...Feeling awfully darned sorry for myself. How come? Are you sitting comfortably? Then I'll begin. ;-)

As the whole world probably knows by know, a few weeks ago I tumped over and hit my head on the corner of the dresser. The "corner" is important, it gains me extra sympathy points. That knock on the noggin (did you know that Scott Hamilton -- I don't know who that Scott Hilton guy the spell check wanted me to write about -- referred to his brain tumor as his "noggin nugget?") seems to have exacerbated something that's been coming... me being pathetically out of shape! My left leg has become numb, down to my foot. I'm currently using a cane to walk, just to keep me from tumping over again. My butt hurts (as my therapist's first client referred to it, my "butticle," which is a fabulous word!). My leg feels like it's asleep, alternately super heavy, or filled with helium. My foot, especially my left foot, feels like I'm stepping on something wicked uneven. I haven't been sleeping well. The Olympics are over. The Red Sox are playing like crap in Florida....

WAAAAHHHHH! Poor me.

Ok, a little self pity is fine, but I need to snap out of this, and events/things keep hurtling my way (stop that, I don't move quickly these days) to remind me not to be silly.

Case in point 1. Jeff's note to me, telling me that the numbness and pain in the butticle are very familiar to him from when he had his problems with the sciatic nerve. And this without my really describing to him what I'm feeling. Kind of like testing a psychic.

Point 2. Sciatic nerve -- inflamed -- is just what George the PT said we were dealing with. NOT CANCER.

Point 3. Jeff reiterates that he is very familiar with what I'm feeling/dealing with right now. Which is NOT CANCER.

Point 4. I'm sitting on the sofa this past Saturday, why I don't know since it is the least comfortable place in the house for me to sit, when we hear the mailman on the front porch and setting something inside the storm door. Melissa goes out to see what it was, and comes back, holding out to me a big envelope with the return address of Cavalia -- a show I have had a draft for a blog about for ages. We were given tickets as a birthday present from my sister, and a limo ride to Boston, from my other sister. I was frankly blown away by the show. I wrote the company. I told them that before I had seen the show I had been facing the possibility of whole brain radiation, but an MRI right after the show suggested I didn't need to do that. (Well, we all know how THAT turned out!)

In the envelope was a gorgeous Cavalia 2006 calendar, signed by Magali Delgado and Frédéric Pignon, with a letter from their home office, apologizing for the tardiness of the note and saying how touched they were -- they had shared it with the entire company and the founder. What a lovely, lovely thing! Made me alternately sniffle and smile the rest of the day.

Point 5. The regular mail the same day brought a wonderful card from my friend Patrish, who has been so concerned and caring all through this. I remember Jeff saying Patrish and Ed are the only couple he knows of, married as long as they have been who still hold hands. In the wake of my tumping over adventure, I guess Patrish mentioned this to Ed, who said, "Well, do you want to hold hands, or fall on your ass?" I have never yet met them, face to face -- when I do, it will be one of the high points of the summer.

Point 6. Melissa looked at me and said, "I'm bored. I'm going to make you another hat." It is _green_, damn it, the green of fresh and growing plants and flowers and stuff. And yesterday, while getting fish for dinner, she stopped in the yarn store (how did I see THAT coming?) and picked up 2 gorgeous skeins of yarn for yet another hat. This one will be purple. I told her I had enough blue.

Point 7. I was at one of the printers this morning; it was not doing what I needed it to do. The VP of our company, our boss here, comes up the stairs and asks me how I'm doing. I sort of shrug and mutter something, and she immediately says, "I'll come see you later," And she does, and listens to me explain about my leg and how frustrating it is. She asked good questions and was as supportive as a boss -- but more importantly, as a friend -- could be.

Point 8. I got a message from Patrish. She can't wait to meet us at Saratoga so she can give me a big Mom hug that will last me til we can meet face to face again.

Point 9. Cheers and check-ins from Rambler in Ottawa.

Point 10. Jeff reminding me not to strangle George.

So somebody please tell me what I'm complaining about? (Ok, that VW ad is pretty annoying.)

TV Commercials

2006-02-28T14:24:00.000-05:00

I like commercials -- good ones, of course, as everyone would be quick to add. What makes one good and one lame, well, that is largely subjective. But recently Volkswagen switched ad agencies, and it's showing up in the commercials. You may remember that VW ran a very quirky series of ads, largely inclusive (which is to say one of those couples was gay; we didn't see many women in them, though).

How, however, the new ad agency has decided -- or VW has decided -- to go after a different demographic. From the 2/28/06 NY Times:
VOLKSWAGEN Strange spots introduced a bizarre character named Fast, symbolizing the need for speed when behind the wheel of the new GTI sold by Volkswagen of America. The commercials were compelling but sexist; only men drove the car and all the women were portrayed as annoying whiners. Gold for getting noticed, lead for sensitivity. Agency: Crispin Porter & Bogusky, part of MDC Partners.

Being a woman I didn't find them all that fascinating. While I was tempted to buy a VW back when the gay couple took the sofa off the curb (and soon regretted it), I am not only not even remotely tempted by the new GTI, hell, I'm blogging about the ads. The ad I want to see is where a woman gets fed up with Fast and hurls him from the car while it's travelling at 90 mph, or pulls it from the front seat and stomps that sucker flat.

Physical Therapy

2006-02-24T13:11:00.000-05:00

First off -- congratulations to the US Men's Curling Team on their bronze medal. Well done, gentlemen, and hope to see you at the Worlds in April.

Also on Friday, I started up physical therapy again. I used to have chronic back pain. I went to George the miracle physical therapist (hereinafter PT) for about six weeks, and felt great. Good enough to start riding lessons. Laura, my teacher, competes in dressage, so balance and centering are key --and very good for one's back and muscles.

What is not good for one's back and muscles? Being virtually inactive for, oh, eight months. Not completely inactive. I do some chores around the house. I go to work. I walk Vixen, but where we used to walk 3 miles a day, we (I) do a half mile now. Which George actually says is a good distance for me right now, thank heavens. So I know George will be able to help. It may not always be fun...

I was right, the man is a sadist. A PT god. A dear, funny, talented sadist, but a sadist. Basically it seems that everything connected with the sciatic nerve that could be inflamed is inflamed. He asked many questions, did reflex tests, did some traction work, showed me how I could do same at home, showed me how I can lie on my side without pain... I was there about 90 minutes. Crap, I've lost a lot in the past 8 months, but it seems to me especially so in the last four weeks or so, but that's probably because of that muscle finally deciding it had had it. I mean, I can't get up from a crouch without help, or something to pull myself against. I'll be seeing him twice a week for a while. As I said, he thinks walking a half mile a day, which is what I do with Vix, is perfect for me right about now (phew!). And I have to ice my back 2-3 times a day. It's freaking freezing out! The idea of pressing a pack of ice against the small of my back is not attractive... but I am doing it. See? I am capable of following orders, even if Melissa doesn't think so.

And hey, he likes curling, too, has even been curling. Once. This guy's a gem. A sadist, but a gem.

It really does take it out of one, though. I'm glad it's the weekend. I was going to go shopping with Melissa after my appointment, but I just let her drive me home. This worried me, though, because she had to go to the fish market. Which is right next door to the yarn store. I figured I was doomed, but she turned up trumps and didn't even go to the yarn store -- which, given that she is nowhere near finished her project for the Knitting Olympics is a darned good thing! (You want all the gruesome details, check out her blog).

And of course, we got 9 inches of snow yesterday. Which makes walking more difficult, especially on brilliantly sunny days like today. Complain, complain, complain! :-)

Tumped Over

2006-02-22T12:24:00.000-05:00

I'm not sure of the spelling of the verb "to tump." I do know it is Southern, possibly peculiar to Arkansas, where my partner's parents live, or to Mississippi, which much of the rest of her family comes from.

A truck that, say, goes a little too fast on a snow covered highway and ends up on its side (in a ditch adds style points) is said to have "tumped over." A tree can tump over. In fact, almost anything, in the right conditions can tump over.

I know. I did it.

I'm going to have to try this vacation day thing again, because it sure didn't work on Monday. I got up and was getting dressed. One leg into the jeans -- hey, that was pretty good, I was on one foot for, oh, seconds at a time! Let's see what I can do with the other one....

What I could do was lose my balance, "tump over" sideways and -- major extra style points here -- hit my head, which is still bald, on the corner of my dresser. And whoever moved that dresser is going to be sorry!

Melissa bolted out of bed. "What happened??"

"I hit my head on the corner of my dresser," I wailed, thinking that was pretty damn lucid for someone who had just hit her head on the corner of her dresser. She looked at my head: no blood, no broken skin, "But you have a dent with a squidgy spot!" I crawled out from between the bed and the dresser and clambered up onto the foot of the bed -- and that's when Melissa got really worried. I guess I passed out for a minute, because next thing I knew I was laying back on the foot of the bed and Melissa was in my office on the phone. While she was talking to 911, I was pulling on my shoes and socks (I was cooking!). By the time the extremely nice firemen arrived, I was standing up in my office. "Where is she?" one of them asked. "Ummm, right here."

I answered all the questions perfectly -- even my age, damn it. My blood pressure was normal. The firemen helped me downstairs when the ambulance arrived (Melissa does not do things by half, nor do I blame her). Actually, the firemen said they might not have bothered with the ambulance were it not for my history of cancer. The EMTs were delightful. I got to ride in an ambulance, though after tumping over and substantially knocking one's noggin, riding backwards is probably not the best thing. I wasn't sick, but made sure I had a basin when I got to the ER.

No headache. No broken skin. Damn little bruising. Eye movement -- normal. No vertigo. No nausea aside from what can be attributed to motion sickness. All of which said to the doctor no need for a CT scan or MRI, especially since I had an MRI less than a month ago, and I'm having all sorts of blood work done next week, and you really, really do not want to make the phlebotomist's life harder than it is by trying to locate my veins twice in a little more than a week.

We were home by 10:00AM. If, heaven forbid, you have to go to the ER, first thing on a Monday holiday is a pretty good time. As I curled up on the sofa -- STILL no headache, but those muscles that hit the floor... and the dresser... and the weight bench... were starting to get sore... I realized (a) how stupid it had been to test my balance quite that way, in that place, then (b) it was just bad luck I had fallen in that direction, then (c) this was the kind of thing that lost Lindsay Jacobellis her gold medal, and (d) it's damn lucky I have a hard head and that I didn't kill myself! I confess, I felt rather freaked out later in the day and had this intense desire just to go to bed. The lucky thing is, I'm so sore from having fallen that lying in bed ain't comfortable!

I felt good enough to go into work the next day, but by the end of the day I was sorer than ever, and a little unsteady (to be expected, Dr. Bonnem said), so I chose to work at home today, with a stack of manuscripts by my side and right next to the massage pillow Bran and Elane (bless them, how did they KNOW?) sent us for Christmas.

Not unrelated to this -- I start physical therapy on Friday. I know it will make me feel much better. The question is, is it going to make me feel worse, first?

I am not a knitter...

2006-02-08T17:06:00.000-05:00

Nor do I play one on TV. Yet somehow or other, I have found myself deep in the company of knitters, cheering on Teams Wales (the Jamaican Bobsled Team of Knitting) in the Knitting Olympics. This past Sunday, I found myself at the new local yarnshop -- comfortably ensconced in a wing armchair usually reserved for trailing husbands -- while Melissa picked out yarn for two sweaters. To be fair, one is for me -- but I had the yarn picked out for it within 5 minutes, I kid you not. Yet we were there almost an hour.

Nor do I have any hope of seeing my new sweater -- a rust-orange gansey -- any time soon. Melissa wants to finish the crochet top for which she bought yarn on Sunday, and then there's the project for the Knitting Olympics. The Olympics projects is supposed to be completed by the end of the games, that is, in sixteen days, including the opening ceremonies. The fact that both Daytona and the Westminster Kennel Club show are on TV during that period may actually help speed things along.

Who do you pretend to be?

2006-01-27T15:18:00.000-05:00

No, sorry, that is not as risque a question as it sounds. I just finished reading Martin Dugard's book, Chasing Lance (about Lance Armstrong and his 7th Tour de France victory). It was a very enjoyable book, and if you're a fan of Armstrong's (trying not to "Lance" him here...), you'll probably like it.

Something that hit me though, and that is when Dugard parts from his colleague and companion during the Tour, Austin:

When we said good-bye in Paris we didn't know quite how to say good-bye. It's one thing to spend ten days riding in a car with a guy, talking about your wife and kids and the quality of the morning run. It's entirely different to make the decision to either shake hands or do the buddy hug. We did neither. He filed his story; I filed mine, and then we walked down the Left Bank at midnight and pretended, like all the other post-Tour tourists, that we were Hemingway.

Men, maybe. Especially American men who find themselves on the Left Bank at midnight. But that caused me to wonder -- who do women writers pretend to be, on the Left Bank or anywhere else?

One thing leads to another...

2006-01-24T17:13:00.000-05:00

The spell checker saw "Tootsie" and tried to correct me with Tosca. I'm impressed.

Current food obsessions

2006-01-24T17:07:00.000-05:00

I know, in January, you're supposed to be focused -- really focused! - on losing weight, specifically that gained over the holidays. But instead, I find myself craving certain foods. Nothing unusual about that, everyone does in the winter.

But my cravings have something like a 2 week lifespan until I get bored and want something else.

Currently: Tootsie-Rolls (Midgees, or however it's spelled), and Wise Onion & Garlic potato chips. Not together.

Previously -- Oreos. My friend Jeff was scarfing them down during the same period of time. We determined since they are, or seem to be, dark chocolate, they qualify as health food.

No clever title

2006-01-23T16:01:00.000-05:00

(I sometimes think the hardest part of blogging is coming up with a moderately intelligent title for a post... I had one when I started, then Netscape ate my post and I have completely forgotten what the title was.)

Today is January 23. 26 years ago, I ran into Melissa, whom I had met a few months before, coming o out of Science Fantasy Bookstore (now Pandemonium) in Cambridge. We spent the next several hours talking -- and we're still talking.

One year ago was the start of the Blizzard of 2005. I was also two treatments into my fractionated radio-surgery. Fractionated -- a full (or nearly) dose of radiation right to the tumor, delivered in five doses. I had had the first two on Thursday and Friday. We drove home on Friday and picked up Vixen. Then it became clearer and clearer that the bulk of the snowstorm would hit late Saturday and all day Sunday -- and my appointment for treatment was for 8:30 Monday morning. In Dartmouth.

We took the dog back out to the kennel and headed back up to Dartmouth on Saturday. We got there just as the first flakes started flying. We unpacked, then headed over to the Food Co-op to pick up food for dinner -- and, truth be told, some junk food, but luckily, Melissa had a package of sushi in the basket when we ran into Dr. Hartford so we could pretend to be eating healthily. The next day, Sunday, was the 23rd, and it snowed and snowed. Up at Dartmouth, we got only ten inches, as opposed to the two feet we got on the coast. Forget the radiation, the one thing I was not looking forward to was shoveling out when we got home. but when we did get home, Wednesday afternoon, my friend Eric -- friend and gentleman Eric --had shoveled out our back walk, enabling us to get into the house.

WHy all this backstory? Last Friday, January 20th, I went out to Wentworth-Douglass for a follow-up appointment with Dr. Singh. I was able to bring the radiologist’s report from my MRI two days earlier.

He said (a) he could tell I was doing much better than the last time he had seen me (during treatment) just by looking at me -- I looked more myself --and he also said the rate of the tumor’s shrinkage was excellent. He also said that the various problems I’ve been experiencing have been caused by (a) the swelling of healthy tissue in the brain as a direct result of the radiation, a completely normal occurrence and (b) the decadron. Yes, folks, two weeks after I was taken off it, I was still wrestling with that ol’ demon decadron. I asked Dr. Singh (almost hopefully!) whether I should go back on the decadron for a spell, or to be macho and tough it out.

He suggested I tough it out, for a few days at least. So, I’m being tough.

It was a very positive follow-up, just what I needed just, as they say, what the doctor ordered. I hope it, and the MRI, are signs that 2006 is going to be, health-wise at least, a lot less “challenging” than 2005 was.

(And it is snowing again, but nothing like last year!)

Oooops. :-)

2006-01-20T12:52:00.000-05:00

Before you ask, umm, no, we didn't make it to Saratoga last weekend. On the other hand, I didn't end up in an emergency room, either. I did end up calling my oncologist on Saturday morning (he was on duty, and it wasn't that early), as I had been feeling... unsteady... since that Wednesday or Thursday. And I didn't think I would enjoy walking around Saratoga when I was worried about my balance. (Then there was the weather, too.)

Of course at first, I thought it was worst case, tumor regrowth, etc. Then I remembered something. On the 6th, he said I could come off the decadron. So I hadn't taken it for something like five days. And since decadron is taken to reduce swelling, it was, it seemed to me, just possible that what I was experiencing was a typical effect of the radiation itself.

But it was confusing, because sometimes it felt like my knees were weak (a side effect of the decadron, though why it should be worse when I had stopped it, I do not know), or like my blind eye was somehow... blinder. So, my doctor slotted me in on Monday morning (which was really good of him, as they do a lot of treatments on Mondays), and because I wasn't able to point my finger to precisely where the problem originated -- knees, eye, or head (do not go there), he suggested I try my eye patch for a few days and see if that helped at all. Especially since I had an MRI scheduled for Wednesday afternoon.

So I tried it. Did it help? I'm honestly not sure! Sometimes I think it did. Sometimes it felt like the problem was in my knees. All I know is that, with a turtleneck sweater, eye patch, and watch cap pulled down to keep my head arm, I looked like a WWII commando! Though some waggish souls suggested I get a dangly earring and a parrot. I declined, not wanting to compete with Johnny Depp.

Wednesday, January 18. First MRI since the radiation. Bloody miserable weather, too -- rain, wind (lots of it). More wind hereabouts than rain. Walked over to the library at lunch, was ahead of the rain, but the wind had me going thither and yon. So, Melissa picks me up, we drive out to the hospital. We get out of the car -- and there is the most gorgeous rainbow I have ever seen. It was a bright, complete arc, and a double rainbow to boot (though the second one was pretty faint). A bunch of people stood around outside the hospital, on the sidewalk, in the parking lot, gazing at the rainbow, silly smiles on our faces.

Still had to have the MRI done. The tech was, as usual, very nice, and more than usually efficient: "This next set will take about 2 minutes," and bam, it would start, no fiddling around. The longest single part was carefully injecting the contrast, since my veins are so awful.

Cut to the chase: I called my doctor Thursday just before noon --and he had just gone in with a patient. But he called me within a half hour or so. "Has the eyepatch worked?"

"I can't tell!" I practically wailed. "Sometimes I think it has, other times, no."

"Well, the good news is the tumor has shrunk. But there is still swelling in the brain."

"Oh. What from?" I asked, having my own notion.

"If I were to hit you on the arm, your arm would be bruised and swell up. The same thing with your brain."

"So what causes that?"

"The radiation. It causes the healthy tissue to swell."

Now, I could be wrong, but I think that is what I was suspecting earlier. And I am profoundly grateful to my doctor for confirming it, frankly (though I think I would have made a great instinctive oncologist!).

The cool/convenient thing is that I am seeing Dr. Singh (you remember Dr. Singh?) this afternoon, and the good folks at my doctor's office said they'd fax the radiologist's report over to him, so he'll have the most recent hard info in front of him, so this could be even more useful than the general follow-up it was going to be. While my doctor said he could not, with any medical reason, strong arm me either into going back on the decadron or staying off it, well, it's Dr. Singh's swelling, as it were, and he started me on the decadron, so I figure I'll go straight to the source and ask his opinion.

So, Saratoga -- and Mayakovsky, Dr. Singh's equine stand-in -- will wait. We're now looking at the first weekend in February and no, not just because that's when the harness racing track re-opens. Much. (Wish I were in Saratoga today, though, it's 50 degrees and quite lovely.)

The Eyes Have It

2006-01-10T17:26:00.000-05:00

As I mentioned earlier, we're taking a bit of a road trip this weekend. Uh-oh, I can hear readers of this blog saying. Didn't you end up in the emergency room the last two times? Well, yes, I did. Not going to happen this time, though. I have been off the high blood pressure medication that caused the hypo-tensive occurrence at Saratoga over the summer (low blood pressure -- I had lost about 30 pounds in two months, and didn't need the medication anymore) for a good length of time now, and my blood pressure remains quite good. Nor do I expect my eye to give me any problems, as I just saw Dr. Norman yesterday and he was almost as happy as a little kid with a new sled by the way my eyes looked and behaved.

What I never knew was that, before scans and MRIs become commonly available, many doctors would use pressure in the eye as an indicator of possible edema or swelling in the brain. Well, he said there's no abnormal pressure in my eye, which there had been following surgery and at my last visit. He was delighted... which made me quite happy, as you can imagine!

Anyway, the road trip. We're heading back to Saratoga, to visit our friend Jeff. It's not going to be a physically ambitious weekend -- the three of us are very much of the sit around talking school (in the summer there, it's the "sit around handicapping" school, but since Jeff is good at handicapping, and I'm as likely to say, "Oh, that's a lovely horse!" well, you can imagine....). And yes, we're probably going to visit at least one yarn store -- if anyone has been to the yarn stores in Saratoga, I'd welcome reviews!

Ms. Vixen will spend the weekend at the Bark n Run (what we call the kennel she stays, and loves). The really excellent thing about this is that the noses will no longer have it, which is to say she is getting a bath. You have to understand, she is a very clean little dog (imagine that said by Paul McCartney in A Hard Day's Night), and never smells doggy. Well, in the torrential rains we had toward the end of last year -- and right after she had a bath at the vet's, she discovered that a house near us had disgorged from its cellar, via pump, something that smelled amazingly good to a dog. She rolled in this spot three separate times -- she never rolls! So I will let Pam deal with it this weekend. I consider it a late Christmas present to myself.

Off the Decadron!

2006-01-07T09:33:00.000-05:00

I had my biweekly (I mean every two weeks, not twice a week) check-up with my medical oncologist yesterday. I had been down to 2 mg of decadron, once a day. And anyone who has been on decadron will tell you, even that is too much. He was pleased enough with what he saw and what the blood work said that he took me off it completely! I have been taking it since mid-November. And right before Thanksgiving, I went up to a high dose of 4 mg four times a day. It's a good thing I lost so much weight following surgery this summer... my face is quite puffy (of course), and I don't currently have any hair to, um, disguise it. Though I have to say, I think I look quite kick-ass bald. It really doesn't bother me, being bald, except when I'm walking the dog in the morning and the windchill is 6 degrees! Yes, I'm wearing a hat, let me tell you, it doesn't always help!

But Dr. Bonnem also said that I don't have to come back for three weeks this time -- nor do I need to have blood work done! That last is especially welcome -- I would think for the phlebotomists -- since my veins are terrible. I'm a challenge, let's say. It's a good thing I don't mind needles, nor am especially queasy about blood... oops, sorry if you are.

Cool!

2006-01-04T17:10:00.000-05:00

It's happened -- and I'm thrilled! I was mentioned on a blog I really admire -- blogdog (in case you missed the link last time!).

How can you not love a site that has such great photos of beardies? And while I don't even knit, I love yarn (I don't quilt, either, and love going to quilt shops), and love reading about people's projects. I know, it must seem weird enjoying something so very vicariously -- after all, one can certainly learn to knit, either well or not, as opposed to say, driving a stock car (Melissa is talking to the auto museum in Saratoga about showing her one of their 1930s cars up close and personal for a book she's working on.). But there is something so very peaceful about it all... well, ok, not to read Yarn Harlot.

It sounds as though Dale and Karen had an outstanding (and remarkably restrained) trip to Patternworks. Melissa is officially a very becoming shade of green with envy. Couple that with the fact that our mad friend Susie (another IBC survivor) lives in Wolfeboro, and it's sounding like a road trip from the seacoast sometime in the not too distant future.

Not right away, though, as we're visiting our dear friend Jeff up at the Spa over King Day weekend. I warned him Melissa wants to also visit two yarn shops up there, and bless him, he said he was ok with that as he spent a lot of time in yarn shops with his ex-wife (!) and his late mother. We pointed out to each other that one of the stores is almost next door to a very fine used bookstore. Something for everyone! Including, we hope, a visit with a friend who is probably one of the two foremost equine photographers, and a visit to a farm which is standing at stud (a) the most gorgeous horse we have ever seen who also (b) happens to have an incredibly sweet temperament, which is very unusual in an intact male who has been breeding for a couple of seasons.

Yarn. Horsehair. It's all fiber.

And next month is Boskone, for the science fiction fans among you. Melissa is going to go down for a day -- as soon as we know what her schedule might be, we'll post it here, on the official Pointsman website, and on her own site(s).

So I want to thank Karen for inspiring me to fulfill one of my New Year's resolutions, which was to post more frequently, and especially for the kind words on the writing.

2005 -- Year of the Blog?

2005-12-28T13:44:00.001-05:00

I know these things have been around for a while, but I was just taking a spin through my current favorites -- among them my friend Dale's, her friend Karen's... There's also the wonderfully smart and insurgent Redneck Mother. My author and friend Chris started one called My Uninformed Opinion-- he writes books on theatre for me, but he is a cogent critic of current journalism and politics.
Melissa has one with a couple of entries, and she keeps promising to do more, and has some great matters to write about. Jeff has, I think, one entry. He is a beautiful writer. In fact, his ONE entry was good enough to get him a guest appearance (paying, thank you) in The Blood-Horse magazine (for us Thoroughbred racing fans).

All of these were started either at the very end of 2004, or in 2005. I guess we all had stuff to write about. Heaven knows I did, though it all ended up being rather different from what I had planned in January... or April. But as I said in the last entry, right now things are good. I hope to be writing more about writing, gardening... you know, every day life... in 2006. Starting with a planned weekend road trip to visit Spajeff... and maybe that handsome stud Mayakovsky, out at Mill Creek Farm!

The other thing I have discovered -- blogs that cover not only dog training, but knitting (or the other way round). I don't know how to knit, alas -- never learned, but Melissa did learn, from my mom, and like both Dale and Karen, this year she made a bunch of very handsome and comfortable socks for Christmas presents. Me, I'm still waiting for my pair.

Way More Impersonal than a Holiday Newsletter!

2005-12-18T10:25:00.000-05:00

I actually enjoy several of the newsletters we get this time of year -- the ones from the Nolans are always fun. My friend Lou always writes thought-provoking ones. (Gee, thanks, Lou, after 3 weeks of daily chocolate and cookie deliveries in the office, you want me to think, too??)

This year, I didn't get Christmas cards out (you may have noticed). My handwriting is still really, really bad. And basically, I didn't get myself together, and Melissa's schedule makes it hard for her (and she's never been a card person, really).

By the way, in the country of the blind, the one-eyed woman is queen (and maybe has a certain amount of wisdom), but she still stinks at putting lights on the tree and decorating in general. Thank heavens, last weekend (the 17th-ish), Melissa decorated the tree (and made the lights look better than I had). It's a great looking little tree, very symmetrical, and she does an especially good job of hanging the glass icicles. I had decided I really wanted all our ornaments that had a sun/heat theme going on, and we have quite a few. And the two new ornaments we got this year -- one a present from one of my sisters, the other a present from a colleague -- are both gold-toned.

Yesterday was the solstice. The days are already 2 seconds longer (my racing degenerate buddies tell me that translates into 10 lengths, a good distance by an reckoning). The Johnny's Seed catalogue arrived. Today the Territorial Seed catalogue arrived. (So did another medical bill, sigh.) My gardening next year is going to be different; I need to be able to get at things more easily, actually see what I'm doing/growing, so I suspect there is going to be more hardscaping, more container gardening. I am still so profoundly grateful I got the two arborvitae out and the crabapples in during an asymptomatic period.

And speaking of those crabapples, I received the best and most unexpected present the other day. Last Saturday, I was starting to feel -- good. Not normal, but headed that way. We were going to the grocery store, and I asked Melissa if we could go to Rolling Green Nursery. Yes, I bought presents for people. I also bought myself two rosemary plants (one upright, one prostrate). Well, Nancy, on the register, mentioned they hadn't seen me since the spring. So I told her what was going on, and she was tremendously sympathetic, wished me well and all.

Monday, there was an envelope from Rolling Green in the mail. The owner, Beth, said Nancy had mentioned I had had a challenging year, and they send me a gift certificate. As you can imagine, I was in tears (again -- I do that a lot these days). What generous, kind people. But real gardeners, real plant people, tend to be.

So do dog people. My friends in Piscataqua Obedience Club stay in touch.
For the first time in years, I missed the Piscataqua Obedience Club's Christmas party. I was extremely disappointed, but I was wiped out at the end of the day (huh, so much for those fatigue levels!), and I had developed either a recurrence of thrush (horses get pretty purple ointment; we humans gets diflucan!). Everyone at POC, please know I missed you!

(Oh -- it's a cold, according to the nurses at Portsmouth Regional, so you should be glad I stayed home!)

A lot about 2005 really...stank. Radiation in November wasn't fun, but I am so grateful for the positive attitude and support of Dr. Andy Singh at Wentworth-Douglass Hospital. And the radiation therapy team -- they rock.

Once again, everyone at Heinemann turned up trumps when I needed them. I am so damn fortunate to work for such a company, with such an outstanding, kind (that word again!) group of people.

Let me give you a quick rundown of the short version Barnett/Scott support team.

My sibs. This ain't easy, but they're there. They're not afraid to ask how things are, what's going on, about procedures and such.

Ike and Elaine, Melissa's folks, visited earlier this month, and that is above and beyond, because the weather was ghastly, especially for Arkansans -- it was cold and we got a foot of snow. My parents have been dead for quite a few years; it's a great comfort to have parents again in Elaine and Ike.

My friend Jeff. I could go on and on about Jeff, but I don't think he'd enjoy that. Suffice to say he is probably my best friend in the world -- and inspired both Melissa and me to say, "Ya know, if I were straight..." Thanks, Jeff, for always checking in.

Sue Walsh. President of Piscataqua Obedience Club. Always checks in, especially since I haven't been able to make it to meetings in quite a while. And informs the club as to how I'm doing.

Susie Hammond. Another IBC survivor. A woman of great panache, drive, and determination. She calls every few weeks, asks what's going on with me, urges me forward. We met two years ago when we were both going through chest radiation (in its own way, the whole brain stuff was easier... and also a lot harder!).

Rambler. From Ottawa, she sends me wonderful handmade cards of one of our favorite racehorses (the beautiful and sweet -- and silly -- Mayakovsky), as well as keeping me informed about Canadian racing. For instance, Mayakovsky's barnmate, Lycius, recently found himself the sire of a Canadian racing award winner. I think Palladio is a great name for a son of Lycius. Lycius is also the dam-sire of Travers winner, Flower Alley. And like the others, she checks in on me -- in her own special, often wacky way.

I think that's one of the points I want to make. The common point is that everyone has been keeping tabs on me -- but everyone does it in his or her own way, and each way is unique. Patrish sends me the most gorgeous cards with Pegasus (Pegasi?) on them. Josh included me in a mailing of some CDs he made over the summer of jazz pieces and standards (Josh, if I have totally misrepresented those, I apologize!) -- music that had me dancing, albeit clumsily, for the first time in easily more than 6 months.

Things are good. Last Sunday, we went shopping (no, not to a mall. To a place called Jenness Farm, where they make goats' milk soap.). I walked Vixen twice, and I made dinner that night -- first time in months. Maybe this week I have overdone a little (not much), but things are indeed improving. Not only can I tell, my doctor, Dr. Bonnem, thinks so too. Woo-hoo!

And yeah, with fourteen days this month below average temperatures, it has not been a fun time to be bald. :-) But I look good bald, and damn if the scars from the brain surgeries hardly show up. I'm really impressed. Cold, but impressed.

That's the news from here. I plan to be more consistent about updating this -- I feel more like writing again, even if my typing stinks.

Winter's here!

2005-12-09T15:21:00.000-05:00

For those not on the qui vive with things with me, I am two rounds away from completing whole brain radiation. DO NOT GOOGLE WBR it will give you nightmares, but we found some excellent sites, and Dr. Singh is very happy with the way things are going. From a massive four Decadron a day (the dose they give you on Mt. Everest, I am down to two. And as I said, my last treatment in Tuesday morning. Celebration is either going to be at Case Espresso, Sake, Pesce Blue, or Outback (we have no indie steakhouses anymore and I love prime rib). The side effects (fatigue, etc, will last for another ten days. Who knows how long the hair will take to grow back, probably around 6 months. Luckily -- DG, you would LOVE this -- there's a new yarn store just opened down in Rye, next town down, and Melissa has a great book of hat patterns. I am wearing one made of a black merino tape. It's is very neat -- and quite warm, which is the key thing!

And yes I am doing NY Times crosswords to keep ye old short term memory loss at bay, though even that seems less than feared. Good excuse to do crosswords, though.

So, there I be! Looking forward to being completely fixed in '06!

Love to you all --

--l.

The sports of the weekend

2005-11-23T11:18:00.000-05:00

Well, it was a good weekend for sports, locally speaking. While Harvard was losing the game in the third, we switched over to TVG to watch the running of the Stuyvesant, in which our friends Joe & Mary Grant had two of their boys, Dr. Rockett and the ever classy Evening Attire running. Well, with new jockey Jose Santos aboard, Attire ran his race, rating close to the leaders, and got the win.

When we switched back to the game, Harvard had tied it up! And won in Ivy League's first triple OT. A winning season, to be sure.

Then the next dday, Tony Stewart won his second NASCAR championship. I am so happy for Tony -- the move from Lake Charlotte, where all the big name drivers live, back to Columbus, IN., has made a huge impact, and he seems much happier this year.

Jack Roush is a whining baby. Kust Busch made a bad mistake, but Roush is not acting like a grown-up about it all. I am delighted his teams were defeated by Tony in his Joe Gibbs racing 2 car team.