*8-23-2002 We’re Back!

 

We’re Back!                                       August 23, 2002

 

Almanac

Thursday was the Sturgeon Full Moon.

In `69 Woodstock was held, and my brother Bob was one of the

600,000  there.   In 1959 (on August 21) Hawaii  became  the   50th

State. Pompeii was destroyed in 79, and the calendar says on   the

17th that “Cat Nights begin”. According to an old Irish legend,   a

witch can turn into a cat 8 times and turn back on the 9th   time,

August 17th, it can’t change back- hence “a cat has 9 lives”.

It has been beastly hot- hot here, hot at Pennsic. Not  much

rain. There aren’t many flowers around right now. Some   goldenrod

and black eyed susans are blooming, and squash blossoms, and   the

fennel- all golden. It’s not very colorful.

 

Farm

While   we were gone the peaches came ripe- Star ate as   many

as he could, but he admitted to feeding some to the goats. I know

that  there   were at least 100 just under-ripe when I   left.  The

other  tree- another variety, still has hard peaches on it.  Last

month the plum tree was covered with little green plums, but only

one is left now- I have no idea what happened to them, but   after

the  lovely   plum tart I made last year, I wish they   were  still

there. As the blackberries come ripe gradually, we are still able

to have some in the mornings when we mow.

I don’t know if I mentioned that the chicks that the  turkey

had  hatched didn’t make it- I guess she didn’t  recognize   them,

and  the hens didn’t adopt them, not having hatched them. If  the

turkey  is around next year and sits chicken eggs again, I  shall

have  to   collect them as they hatch and put them   in  a   brooder

until they are old enough to survive alone.

We   put a fan on the rabbits and they seem to have   made  it

through  the heat. I did see another way of helping rabbits  deal

with the heat today- in Agway they had a frozen (thawing)   bottle

of water in with the rabbits and they were lying up against it. A

couple  of   days before I left Star and I noticed a   lot  of   fur

pulled  in the cage that Columbine and Murray have been  sharing.

We are pretty sure that they are too old to breed- and I   thought

it  would be more companionable for them to be together while  we

let  them   die  of old age, but just in case  she   was  about   to

kindle,  Star   and  I made a new cage   and  separated   them-  and

apparently,  they pulled fur just because it was too hot.  Still,

it’s  good to have the other cage made. We are going to  have   to

buy a new breeder- I’ll pick the best of the last litter and   get

either  a new buck or a new doe, depending on which the  big   one

turns out to be.

 

Medical stuff-

It’s   been  a while and it all runs together.  When   last  I

wrote,  AElfwine had finished up his chemo without  much   fanfare

and they sent him home. The whole week he was in for it they kept

asking the neurologists and opthamologists to check him out,   but

they didn’t do it until they were finally sending him home.   None

of them could find any reason for the vision problems despite   an

MRA  (a special kind of MRI that notes blood flow) so I  am   left

convinced  that it was Divine Intervention making an  excuse   for

the doctors to check his Cerebral Spinal Fluid so that they would

find and treat the leukemia hiding there.

Anyway,   since  then he’s been getting   a  Lumbar   Puncture/

Spinal  Tap twice a week, where they take out some CSF  to   check

for  leukemia   cells, and put in some chemo. They  told  us   this

would only take two or three applications, but it’s still   there,

and they only have three chemos available that can be used in the

brain,  and they’ve tried all three- now they are trying  combos.

The one that disturbs me the most is methotrexate- because one of

it’s side effects is Chronic Demylinating Disease. They say   they

have no choice- and I suppose a corpse with its myelin   sheathes

left  unscathed   would be pretty useless to us, but   still,  it’s

spooky,  especially as when it happens in the brain it can  cause

pretty severe effects.

He   got  few days at home, although they  were   pretty  much

taken up by going down for the clinic and having visiting   nurses

  1. Tracy brought up an air conditioner for us on Sunday, but   by

Sunday  night AElfwine had gotten the expected infection and it was  back

to in-patient again. Once there he got a lot of blood (four   bags

the  first night) gradually tapering off since then, and lots  of

tests  to   keep track of infections. Every time   a  new   bacteria

cultured  up   they’d  switch him   to  whichever   anti-biotic  was

indicated for that one. (At some point he developed one of   those

anti-biotic  resistant ones- probably while he was in there.)  He

has  no big line now- just normal IVs, which in theory  can   last

four  days, but often need to be changed within one because  they

stop  working. When they said that putting in the  central   lines

caused  scarring, we’d assumed that they meant on the  skin,   but

apparently the big scarring is in the blood vessels, and his   are

in  really   bad shape now. Finding a new place to   stick  him   is

becoming a challenge.

Also,   there  seems to be scar tissue forming at  the   spine

where  they   do  the   LPs,  which   makes  it   harder  to   do  the

interthecal  chemo application- the last few they’ve had to  send

him down to fluoroscopy to hit the right spot. Since the leukemia

in  the   CSF hasn’t gone away they want to put a shunt   into  his

brain  to   put  it   in.  Mostly   this  seems   to  be   for   their

convenience-  before   they dare stick him, they have to   get  his

platelets  up above 50k, and they only maintain him at  20-30k   for

lying  around in bed (but no heavy exercising!) so they  have   to

give  him a bag which means getting them matched  and   irradiated

for him, then check his level, then maybe do it again, then   call

the doctor, and line up an appointment with fluoroscopy, and have

the pharmacy mix the chemo, and wait for the doctor to show up to

administer it, etc. etc. It takes most of a day. If they put   the

shunt in, a tech can put it in the reservoir, and they don’t need

to  up his platelets first. Of course, it requires brain  surgery

to  put it in, and it’s considered a permanent  installation   (no

more SCA combat unless he gets so well that they consider it safe

to pull it- or breaking kindling over his head, or anything   else

using  his   head  as   a  hammer or   anvil).  This   was  not   very

convincing. Apparently they can usually sell people on the   shunt

by  telling   them  that they wouldn’t have to  have   spinal  taps

anymore. But we finally agreed when the doctor said that it   also

delivers  the chemo to the CSF better. So that’s coming up.  They

probably would have wanted to do it sooner, but they can’t   while

he’s doing the infection thing- but that all got over with during

the first week or so.

Meanwhile, his Guillion Barre continues to get better-  he’s

now  walking   without a cane, and may be stronger. It’s   hard  to

tell when he can’t exercise much. But that’s nice.

He’s had some nausea- not >from the first chemo, but from the

intrathecal   (in   the  spinal   fluid)  stuff.   They’ve   finally

controlled it with almost constant IV anti-nauseants, which leave

him  rather drowsy- but he can eat again- when visits to  MRI   or

Fluoroscopy land don’t interrupt the anti-nauseants flow. Between

that  and   the Benadryl they give him whenever he gets   blood  or

platelets,  he isn’t very perky. His hair got loose,  and   rubbed

off  where it hits the pillow, but didn’t fall out. And  tomorrow

or  today   he’s  supposed   to be not  neutropinic   any  more,   so

Infectious  Disease   is going to start weaning him  off  all   the

anti-biotics (although not until after the weekend).

Last   week  they did a Bone Marrow Biopsy, and all  week   we

kept  asking   for results- and they were never back yet,   then  a

week later they wanted another. We figured they must have lost or

contaminated  the first, but it seems they just wanted  to   check

them  against each other, which they have done. And the  leukemia

is  sufficiently   “controlled”  that if it   doesn’t  get   out  of

control  again, they think they can skip another round  of   chemo

before the next transplant. That’s the good news. The bad news is

that  they   can’t  even   think about  the   transplant  until   the

leukemia is gone from his brain fluid- so that’s all on hold.

It was rather daunting when Dr. DeAngelo did point out  that

at any point we could give up and have him come home to die if we

were  really tired of the whole deal. I have to admit that  I   am

VERY tired of the whole deal. He only has been home 39 days   this

year,  and doesn’t look to get back soon. But we aren’t ready  to

give up yet. We are still aiming for the gold ring of   permanent,

or at least sustainable remission.

In   this  last   year  alone   there  has   been  so   much  new

information  about cancer- whereas last year the whole  idea,   as

you may recall, was to beat the cancer by killing every last cell

so that it couldn’t “come back”, now they know that cancer occurs

all  the   time, maybe even monthly or even weekly, but   that  the

healthy   immune  system  just   deals  with   it.  So    they   are

concentrating  more on helping the immune system- not to  mention

the advances in gene level cancer research. Heck, if we can   just

keep him alive another couple of years they may find something at

the  genetic   level  that   will be  able   to  do   something  more

permanent.  I   have to remember that as  he’s  survived   eighteen

months  since his diagnosis, he’s considered a success. I’d  feel

that  it   would be more of a success if we’d had more   time  with

him.

I can’t help but remember that my mother (having been  given

six  months to live) lived three years, took lots  of   vacations,

cleaned her house and died in her sleep, after having had   dinner

with  her   family. And my brother seemed to always   have  friends

over  there whenever I went over during his cancer year.  Because

of the immune system damage, AElfwine has been isolated for   most

of the time he’s been fighting cancer. We’ve hardly had a   chance

to see anyone during these last months. It was very touching   for

me  that   so many people at Pennsic seemed to remember   him.  I’d

gotten the impression that we were pretty much forgotten.

 

Pennsic

AElfwine   wanted me to go to Pennsic, so as soon as   he  was

settled into the hospital, I set Star up at the Farm, and   headed

down.  It was pretty weird driving down all by myself, and  going

into  the Troll by myself was very depressing. For the first  day

or  so I felt weirdly attenuated- I think my aura  was   stretched

between Pennsic and the hospital, but I got grounded and centered

again within a day or so. (And I note that now that I’m back   I’m

having the usual disassociation I habitually have after   Pennsic,

not  being able to remember where I am for a minute after I  wake

up.)  But   I have to say that as last year, it was great   to  get

there  and NOT have to put up the house. Whatever  happens,   next

year  we are going to do our utmost to have a wagon trailer  type

Pennsic  cottage.   (And as with the last three years,   the  house

didn’t sell, although lots of people said they WANTED to buy it.)

As I said before, it was hot, and there was almost no  rain-

which,  considering the age of the roof, was good. It was so  hot

that  I didn’t cook more than a couple of meals. We  had   venison

stew once, and a chevon pot roast, and a corned beef dinner,   but

I didn’t dress a rabbit before I came. (The time I allocated   for

that was eaten up by going out to buy a new car battery. Twice it

went  dead when I’d left the doors open for only fifteen  minutes

while  packing, so I figured I didn’t dare go as far as  the   war

without  a   good  one.) I was REALLY   disappointed  in   the  food

available  there.   I’m told that the best food there was   at  the

middle  eastern   place, but I’d avoided it because   of  the   long

lines. (Dumb! I guess I didn’t figure that one through.) Kat   and

Willow  didn’t seem to have minded as much, although they  concur

about my cooking being better (they also agreed that not   heating

up the house was a good idea too).

While   putting  up   the house Kat had gotten  a  REALLY   bad

sunburn  on her neck. Had I been there I would have been able  to

tell them to put ice on it, but I wasn’t and I think it went down

into  the muscle before I got there. Luckily the lady who’d  told

us  about   Emu oil was there again this year, and every   day  put

some  on   Kat, so she recovered probably as well   as  she   could.

Apparently  they  are doing incredible things with  Emu  oil   and

burns-  it’s   being extensively tested up at  the  Shriners   Burn

Institute in Toronto. (When I got home, I ordered some. Don’t   be

home without it!)

Kat went dancing a lot. I’m not sure how often she wore  her

boots,  but she made a beautiful pair of boots for  herself   from

some  butter   soft black suede- I helped with  the  pattern,   but

basically she made them herself. I guess I was about her age when

I  made   my  first pair. I remember stitching  it   by  hand,   and

adjusting  the fit as I went, so I’m a bit jealous of her  having

done  it by machine, but I think my final product may  have   been

better.

Jenny and Willow had a great time, as usual, and have had an

incredible  offer for September. Since Megan has  that   wonderful

opportunity  with the four book contract in England,  but   Dennis

has  stuff   of his own going on this side of the puddle,   he  was

concerned  about   sending  Megan over   there  alone,   so  they’ve

offered  to   have Willow and Jenny go over and be her   PCAs  next

month.  So they are now scrambling to get passports and  such   in

only a month. Willow is a bit dubious about leaving us, but   it’s

such  a wonderful opportunity, and once the kids are  in   school,

it’s going to be a lot easier to handle every thing without   her.

Until  then she’s going to have to relax as much as  possible   to

recover from Pennsic, and have energy for the trip.

I   didn’t do much at Pennsic. Our big project was   finishing

collecting  the   1000  woman   stitches  on   the  white   sash  for

AElfwine.  After a few days I figured we’d made the thousand  and

took  the sash into full sun to count the stitches. (Who came  up

with the dumb idea of white on white?) I think I must have missed

some because I only found about 700- and I think I was at 600   at

Birka. Honour put a note about it in the paper, and Kat took   the

sash through the crowds at the barn during court, so we did   make

  1. Ladies kept telling their friends and sending them over.   One

lady  picked it up and said it made her hand tingle there was  so

much energy there. Marvelous people.

We   also  had a notebook out for people to  write   notes  to

AElfwine, and Viz had another notebook on the field. He’d decided

to  spend   all  day   every day on  the   field,  and   offered  his

opponents  the   opportunity to write something to   AElfwine  too.

I’ve only read a couple of entries, but they are very touching.

Then   Megan  came up with a semi-bizarre idea,  if   AElfwine

could not come to Pennsic, she’d send Pennsic to AElfwine. So she

collected bits and pieces of this and that- duct tape and canvas,

and  fliers,   and  all   sorts of stuff. There was  a  tape   of  I

Sabastiani-  sadly, it was not in a format which  AElfwine   could

pop into the hospital VCR, so we are still looking for a way   for

him  to see it. She mentioned AElfwine in various order  meetings

and lots of knights sent him links from their chains, and   others

pieces  of   their  knights   belts  or   favors.  (And   she  packed

everything  in plastic bags to make sure that she didn’t send  in

anything that could give him an infection.)

I   called him three or four times a day- luckily   he  didn’t

have  any crisis that required my rushing back. And I  talked   to

Star  almost   daily too. Our cell phone bill will   be  horrendous

this  month. Mostly I stayed at the shop, although I did go to  a

series  of lectures on celtic embroidery. I did some shopping-  I

got AElfwine a big fluffy sheepskin to sit on since his but is so

diminished, and another tapestry for the hall. I also got a repro

Anglo Saxon pitcher, c.650.  AElfwine and I also decided to get a

copy of The Viking Age, a really excellent resource book about   a

hundred years old which we’ve only had in Xerox until now.

Other   than that I kept buying squares of linen and   hemming

them them to use as veils- when it’s hot the best way I’ve   found

to stay cool is to wet down a linen veil and wear it- Willow   and

Kat  kept   stealing them. We weren’t very elegant,   but  we   were

cooler than most of the people there.

We saw lots of friends- I could list them, but it occurs  to

me  that that would be kind of pointless. Still, it was  cool   to

see so many (especially as I’ve mentioned that I’ve been   feeling

isolated).  Honour was next to us, as usual, although she  wasn’t

there the whole time. Luckily, Joanna of the Singing Threads came

to stay with her, because at the beginning of the week Honour got   a

call  that   Mrs. Jaruk had died, and she and Alex had to   take  a

train back up to Massachusetts for the funeral. Both Alex and she

had been very fond of Mrs. Jaruk and I think it was very hard   on

both  of   them,  but at least Joanna   and  Alizaunde’s   new  shop

assistant,  Rivka,   were able to handle the shop  while  she   was

gone.  Indeed, I rather wish I had a Rivka, she sold more  cloaks

the  first   day than Honour usually sells in a war.   (As  is   not

surprising,  the   sheer  chemises went very   fast  in   the  heat.

Luckily  for us, one had gotten shop dirtied and been set  aside,

so  we were able to buy it. The two chemises that we’d  made   for

Kat  to   go with Diana’s old chatoiant and velvet gown   had  such

“bulky” fabric- sheer muslin- that the gown sleeves  wouldn’t   fit

over them. Honour’s super sheer chemises worked.)

Another   friend- Jeanne Steele also got an emergency call   on

the first weekend and she and Kia and Christopher had to fly back

too.  She was told only that her mother had had an  heart   attack

and  was in the hospital, but stable. In my opinion that  is   NOT

enough information to give an immediate family member. The   hours

between  getting the call and getting to the hospital  must   have

been  an agony of wondering what she’d find when she  got   there.

And when she did it turned out that it hadn’t even been an   heart

attack.  Jeanne’s   mother had been on a waiting list for   a  lung

transplant, but her good lung had given out, which I guess looked

like heart attack to the responding EMTs. Jeanne was able to come

back  for the last day to pack up her tent and drive her own  car

back,  but   her  mother is still on a   respirator,  and   in  very

serious  condition.   I  haven’t   heard an  update   since  I   left

Pennsic, but we can only hope for the best.

Of course, after those two calls, I kept waiting for a third

one for me, but luckily, it didn’t come. I sure feel lucky   about

that. Also it was reassuring that Pennsic was still Pennsic   even

though  AElfwine wasn’t there (although I did feel a  bit   guilty

sometimes when I realized that).

 

There   were several wonderful things I will   remember  about

Pennsic  this year. First, the outpouring of love  for   AElfwine,

and  also the heat. Another thing I’ll remember is the  sky   over

the barn during great court- there was a lot of lightning in   the

clouds, but no rain, it looked like that bit in the beginning   of

the first Fantasia movie- and it lasted for hours! (Someone   said

that she wouldn’t worry until she saw dolphins diving out of   the

sky- but that was the second Fantasia.) Another really neat image

was  the fighters going off to battle- situated as we are on  the

main  road between Midrealm Royal and the battlefield, we get  to

see a lot of parades. (Mostly we mock them- the Middle King had a

huge,  I’m   talking  25 foot long, chariot with a  dragon   for  a

tongue which he rode into court. We wondered often and loudly   if

he could be “compensating for something”. But in equal measure we

pointed out that the Eastern King was riding the “short chariot”.

The  kings did a shtick at opening court where the  Eastern   King

stabbed the Mid King with the War arrow (usually they just   break

it).  I   suggested that as he rode the little bus,   er,  chariot,

maybe  it   wasn’t  treachery, maybe it was  just   impulsivity  (a

common special ed problem). Of course, since the middle King   had

a  packet   of ketchup under his mail, it must have   been  set   up

before  hand.   I really didn’t like the barbarian   captives  that

were  processed bound before the chariot- while he was doing  the

“Roman”  thing,   it  just   set my nerves  on   edge.  But   another

procession had a huge number of girls in white with big   banners,

singing. I’m not sure what they were doing, but it looked   really

good.  (Sadly, the whole roll of film we took didn’t come out.  I

think  they   were  on it.) There was also a  neat   bit  when   the

fighters were coming back from the woods battle. We noticed   that

we  could   tell which side the fighters were on by the   way  they

walked. While they all looked hot and tired, the winners had some

spring in their step, while the losers trudged.

Another thing I’ll remember is the help we got from  people.

I  wasn’t there when they helped Willow put UP the house,  but   I

was  there when Olaf and Joanna and her family, and  Charlie   and

Maria and their son Robert helped us take it down. (And also when

Willow  and   I  had managed to get too much solder  spread   on  a

coronet  we were doing, and Olaf came in one morning and  cleaned

it  up   for  us.) Also, there was one funny thing.  As   we  don’t

intend to use the cottage again, it’s not going to risk   anything

to  tell   that we always hide the money we make in   a  bag   which

hangs on the back of the drawer in the stove (which is built into

a  cupboard).   This  means to get at it, you  have   to  open   the

cupboard doors, pull the drawer all the way out, and take the bag

off the hook on the back. As we finally got the last things   into

the bus, I started to think about dropping it off at Portersville

Self  Store, and thought about paying the year in advance  as   we

always do- usually from the years take. And I realized that while

I  was packing the van, everyone else had been packing  the   bus-

including putting in the stove, and piling all the other stuff in

front of the doors. So Willow had to climb in over all the pieces

of  the house, remove all that stuff so she could open the  door,

and  get at the money! I plead stress. Luckily, torn,  as   Joanna

said, between laughter and murder, everyone chose to laugh at   me

instead.

I talked with Dennis about the idea I had had involving  him

for a cooking show. Several people have suggested that I could do

a  cooking   show  with a medieval theme- and I’m  sure   I  could.

Especially  after eating at the war this year, I know I’m a  good

cook, and I think the medieval theme would be different enough to

get people to check it out once anyway. But my feeling is that if

I  got   Dennis to be my co-host, I’d talk food and   history,  and

cook,  and he’d eat and make fun of everything- I think we  could

easily go into syndication. If we can come up with an outline for

whatever  number of shows one usually starts with- I  think   that

next  Pennsic we should film some footage which we can clip  into

each episode, which would further make it unique.

 

Anyway, now we are back. Willow and I didn’t convoy, but  we

did  call each other and met once in New York- she went  straight

through,   while   I  stopped   and  slept   for  a   few  hours    in

Connecticut.  Kat   suffered from enough stress that   she  had   to

spend  the   first couple of days- and indeed, most of   the  trip,

with a cold. But we got everything unloaded, did laundry, cleaned

the  refrigerator,   all  the   stuff we  have   to  do.   The  worst

discovery  was what looked like an exploded bird on the floor  of

the  hall.   Much  feathers, much broken glass,  much   and  varied

maggots.  We figured that a bird crashed through the  window   and

died there. Yuck. We felt SO virtuous after cleaning it up.

 

Friends

Fitz   is still in the hospital- apparently he   still  hasn’t

managed  to get to whatever the person who was going to take  him

in  to do so yet, or more likely, he still isn’t good enough  yet

at bed to wheelchair transfers. Obviously I’ve been really out of

touch, even since we got back. Wolf hasn’t been back for   another

load  yet, and I understand won’t be coming back for at  least   a

month. I fear whatever is still here is going to be here until   I

pay to have it carted off.

I   haven’t heard anything from the town about   the  peacocks

since we got back, nor from the Mikelas. I’m going to try to just

not let it bother me (also I’m trying to just let the aggravation

from  St.   Joseph’s  Hospital   go too). I  don’t   need  any   more

negative  energy.

Until next Monday- (which occurs to me is pretty soon  since

I took three days to write this letter)- Tchipakkan

 

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