*4-2-2001 Week Four

Going into Week 4 (how time flies when you’re…)   April 2, 2001

 

 

 

Since the biopsy last week was good, and all AElfwine has to

 

do now is heal, he has become boring to the doctors, and not much

 

seems  to be going on. What the doctor’s said precisely  was  “We

 

didn’t  see  anything that we didn’t like.” I interpret  this  as

 

that  they  did see something, but they liked  it-  probably  his

 

blood  cells beginning to come back. So they pull a little  blood

 

every  morning and analyze it, and we await the incoming  numbers

 

like stock market moguls waiting for their returns. This  morning

 

the white cell counts were .46 whereas they’d been .26 yesterday,

 

and  .20 the day before, so we are fairly encouraged. While  they

 

can  keep  pouring  packed red cells and platelets  into  him  to

 

maintain  acceptable  levels (and they do), they can’t  give  him

 

white  cells,  everyone must make their own. (This  is  why  it’s

 

preferable that his come back on his own if possible rather  than

 

doing  the bone marrow donor thing.) On Day 14 when they did  the

 

biopsy,  they  asked Steve, Claudia and Tracy to get  their  bone

 

marrow  checked for matches- just in case, but they do  say  that

 

they don’t think it’s going to be needed.

 

 

 

According  to  Nurse  Lana,  (who  is  rapidly  becoming  my

 

favorite, as she is VERY big on sharing information- although she

 

won’t say no if I offer her pistachios either) this was  supposed

 

to  be  the  week  he felt worst, and he seems  to  be  right  on

 

schedule with that. He was very tired, and his appetite went  way

 

down. He wasn’t nauseous, but just couldn’t face the food. Hey, I

 

saw  that  food. I SMELLED that food. I have developed  a  theory

 

about why cancer patients lose weight- it’s hospital food.  Yuck!

 

Also,  he  has a mouth care regimen that requires  some  sort  of

 

mouth care every two waking hours or so, many of which require no

 

eating  for  an hour afterwards- and that cuts into  his  grazing

 

behavior some. Still, he’s gained a pound back- now he’s down  10

 

pounds.  (On my weight loss- I’m down 20-to 225, and  hoping  the

 

loss  rate slows soon- I sure would hate to have it boomerang  on

 

  1. So I’ve been stuffing myself with anything healthy I can get-

 

insisting  that the family does full meat, complex carb,  2  vegs

 

plus  a  salad  meals  every  night,  and  healthy   protein-rich

 

breakfasts. It’s not low calorie, so it must be avoiding  sugar.)

 

I  must say that the kids sharing the dinner making chores  seems

 

to  be  going  very well. I get back on those days  and  find  my

 

supper  in  the microwave waiting for me, and they seem  to  have

 

eaten  well. I suppose as “the baby” is thirteen, it’s not a  big

 

surprise  that they can cook dinner. Kat even made a  wheat  free

 

lemon  cake  (which her brother gave “two thumbs WAY  up”)  along

 

with her sirloin tips. (Star did hamburgers and french fries.)

 

 

 

AElfwine’s  beautiful  golden hair has begun  to  fall  out-

 

right  on schedule. The icky news is that his beard seems  to  be

 

included. So I told him to stop pulling out bunches of it to show

 

people, so as not to leave empty spots, and to comb his beard and

 

mustache  before eating. Hair in your lunch would make it  gross,

 

even if it weren’t hospital food.

 

 

 

Mostly  he’s just tired- but Lana explained that  that  (and

 

the  loss  of appetite) is a side effect of  the  antibiotics.  I

 

remember once when a ten day run of antibiotics knocked me for  a

 

loop for a whole month- and he’s on several at a time! (They  are

 

using antibiotics as a substitute immune system.)

 

 

 

Here’s his latest med list:

 

Levaquin and Aztreonam (antibiotics)*

 

Amphotericin B (antifungal)

 

Amicar (for bleeding)

 

Codine and Robitussin C and Tessilon Pearls (for cough)

 

Colace and Senna (stool softener)

 

Lasix (diuretic)

 

Potassium and magnesium (because the diuretic flushes those)

 

Tylonal (for fever)

 

peridex & Nistatin (mouth care)

 

plus, of course, various blood products and hydration IVs)

 

*(others he has had are tobermycin, Ceptazadine and Vencomycin)

 

 

 

Of  course,  that list was from Saturday, and I  think  they

 

changed  one  of the antibiotics yesterday- they  keep  switching

 

them around to reduce side effects. A few days ago he got a rash,

 

especially  noticeable on the palms of his hands. But that  seems

 

to be going away again.

 

They  continue  to  avoid ones  that  would  compromise  his

 

kidneys,  which they say are fully recovered now (and  his  urine

 

now looks like urine again!), as well as ones that could  further

 

damage  his  hearing. They first took him off  the  ear  damaging

 

antibiotic  on  the  19th, but the doctors  didn’t  call  for  an

 

audiologist  to  check him until the 26th- and  said  audiologist

 

still  hasn’t shown up. (they say “today for sure”. Uh  HUH.)  My

 

guess on this one is that if it’s a fairly common side effect  to

 

lose about 30-40% of your hearing, it’s something they just  deal

 

with, but when you start with 50% of your hearing gone as in  his

 

case,  it complicates things more. My position is that if it’s  a

 

fairly common side effect they should have a system in place  for

 

loaning  the patients (or giving them disposable)  hearing  aids.

 

One would not want to risk communication mistakes in this  venue.

 

Mom’s old hearing aids are giving up the ghost- helpful, but  not

 

able to really provide good adaptation.

 

More good news: Yesterday for the first time he did NOT have

 

his  usual  afternoon  elevated  temperature,  which  they  never

 

tracked down a cause for. He is also off the supplemental oxygen,

 

although he does need constant cough suppression. He even managed

 

to hurt his abdominal muscles from coughing too much. I think the

 

senna may be to counteract the constipating effect of the codine.

 

What a balancing act! I am very impressed.

 

 

 

I just got a call from him- sharing that Dr. Alyea says that

 

he  is ahead of schedule in his healing! Watch our smoke! On  the

 

other hand, it does make me a BIT panic-y about getting the house

 

cleaned  in  time  for him to return. I guess  I’d  better  start

 

calling people and schedule cleaning parties for the next  couple

 

of  weekends. (Please let me know if you can come and help-  even

 

on  a  weekday, I’ll take all the help I can  get!)  The  doctors

 

wrote  “at  least five weeks hospitalization” on  the  disability

 

forms,  but hey, we’ve done three of them already.  (Yikes!)  And

 

somehow Easter Weekend doesn’t seem to be the most likely one  to

 

lure  people out. Well, it will all work out somehow.  It  always

 

does.  The  doctors can think it’s medical advances,  the  people

 

praying  for  us can say it’s God, fine. All I know is  that  our

 

life  always has been good, and I expect it always will be  good.

 

Life has problems, but that’s life. On the whole- this has been a

 

pretty positive experience for us. (Of course, if we didn’t  have

 

insurance, I expect it would have been a nightmare!)

 

 

 

We’ve  gone through the bills and apparently he  was  making

 

enough that we should be able to meet all our expenses on the 60%

 

of  salary we get from his Disability Insurance. (This  does  NOT

 

include  stopping at McDonalds when we go down to visit, much  to

 

Kat’s  disappointment, but “tough”.) Anything extra will have  to

 

go  on the credit cards, which thank goodness, were totally  paid

 

off,  so we have that to fall back on, and we’ll be able  to  pay

 

those  off  when he gets back up to 100% again. (It seems  a  bit

 

tacky  to  mention it, but so many people have  been  asking  how

 

we’re  doing, I thought I should reassure everyone.) The  biggest

 

expense is going to be a new car. The Geo is totally dead- but  I

 

figure  we  don’t need to replace it until Aelfwine is  back  and

 

going  to work again. I feel it would be really  presumptuous  to

 

pick out a car for someone else anyway. Cars are so personal.  In

 

order  to have a second car for the time that I’m down in  Boston

 

(half  the  time) Willow has decided to get herself one.  I  must

 

admit that we are both a little nervous about that, since neither

 

of  us know much about cars, and we don’t have AElfwine to  check

 

it  out for us. So I guess we’ll just run it by Charlie (it’s  so

 

nice  to  have a mechanic you trust!) before she  buys  anything.

 

Speaking  of personal perspective- I am having a real  hard  time

 

telling  the difference between a “Mom-mobile” which  she  really

 

does not want, and a Sport Utility Vehicle, which she does. (Most

 

of  the  Mom’s  around here drive SUVs, so that makes  it  a  bit

 

harder.)  As  with  Aelfwine’s car, I don’t  think  it  would  be

 

appropriate for me to tell her what car to drive, especially when

 

she’s going to buy it with her own money. I’m suggesting that she

 

get a bit more expensive one, and if they want, we’ll co-sign  it

 

with  her,  to get a better quality car. Our biggest  problem  is

 

that we need it NOW rather than “soon”, and the current  schedule

 

crunch really handicaps our ability to shop around.

 

I   wish  we’d  have  it  tomorrow-  I’ve  got  a   doctor’s

 

appointment today (at which I predict that he will say first  “If

 

you’d  come  in  a month ago we could have  done  something,  but

 

now…” and also “If you just stay off of it for a month it  will

 

heal.”  (In  case  you’ve forgotten, I twisted my  foot  the  day

 

before  Star’s  birthday and seem to have strained,  sprained  or

 

otherwise damaged a muscle in it, and it still has me limping and

 

hurting.) And then tomorrow Jenny arrives, so we have to be  here

 

to  pick her up at the airport- so that’s going to make two  days

 

in a row that I won’t be able to see Aelfwine. I hate not  seeing

 

him every other day- two days is going to be worse! (Sulk,  pout,

 

whine.)

 

We had another snowstorm on Friday, it was supposed to  have

 

been rain, but was all heavy wet snow. About a foot around  here-

 

more  up  where Wolf is working. (I think they get more  snow  in

 

Washington  than anywhere else in the state!) We did  lose  power

 

for  a few hours, and Kat had a snow day. I think they are  going

 

to  be  going  to school until July this  year!  Luckily,  Star’s

 

school  was already having a teacher conference day so he  didn’t

 

get a hair across his nose.

 

Star  is being just wonderful- he’s now milking  both  goats

 

when  I’m not home in time to get to it, and has actually  gotten

 

fond of them. The goose pond is buried again- and the steps  Wolf

 

carved into the 3-4 feet of snow out the back cellar door have to

 

be  re-dug in. The geese are laying- and are very loud  (although

 

the one who was in the nest during our little adventure may be  a

 

bit  traumatized as the bullet passed within a few inches of  her

 

head. (I bet that got your attention!)

 

 

 

Sunday morning when Willow and I went out to do the  chores,

 

she went into the chicken house and found the opossum (we  assume

 

it  was the same one we’d seen back in January) actually  IN  the

 

nests, helping itself! We explained politely that we had no  real

 

wish for it to die, but that we couldn’t have it eating our eggs.

 

(I  guess that explains why we went from two dozen eggs a day  to

 

one  dozen.) Then Willow got her father’s revolver (saying  “Ick!

 

Ick! Ick!” all the way there and back) and blew it’s brains  out.

 

After  which  I hit it with the axe just to make sure  it  wasn’t

 

suffering.  (Dear  Minna has said she’ll take the fur.)  Now  the

 

only question is how to sell off the greater number of eggs since

 

we  were  having  a  hard time moving a dozen  a  day!  I  called

 

AElfwine  and  told him

 

“Your  daughter  is  now  a Man!  Well,  sort  of.”

 

He was impressed because that gun has very bad sights.

 

 

 

Her wrist is somewhat better- she’s been being careful about

 

it  with the computer, but it still gets all tingly and or  loses

 

sensation sometimes.

 

We  are  trying to do at least one  major  cleaning  project

 

every  day when I’m home, and she tries to do a minor  one  every

 

day  I’m not. This process should be helped with the  new  vacuum

 

cleaner. I got one of those super anti-allergy ones with the hepa

 

filter built in. I’ve been wanting one to help with the mold  and

 

dust  allergies for years, but the last time I checked they  were

 

$700,  this time they were down to $400- and between keeping  the

 

mold  down for Aelfwine and for the kids, I figured it was  worth

 

  1. The dryer was delivered, and in theory next week the  propane

 

will  be installed. I am a bit dubious considering the new  snow,

 

but  things are moving fast enough- if it takes another week  and

 

the  snow melts so we don’t have to dig it out, I can  live  with

 

  1. (I came up with a new theory- I still haven’t hauled the Yule

 

ornaments  up  to the attic yet. Maybe it’s just  going  to  keep

 

snowing  and making it look like Yule until I  do!  Superstitious

 

twaddle, maybe. But just in case, I’d better move that project to

 

the top of the list!)

 

 

 

We  got our first medical bills this week. Actually  it  was

 

one  of those “you are delinquent, pay in 10 days or  we’ll  send

 

this  to collections” type bills. I called them and told  them  I

 

usually  expect a FIRST bill before a threatening one,  and  they

 

apologized (a lot) and said it was a mistake. I rather wonder  if

 

we’ll ever find out how much this hospital stay has cost. And how

 

can  anyone  expect costs to be kept reasonable if no  one  keeps

 

track of them? I’d already called the Insurance company, and they

 

say that our share is going to be capped at $1000 dollars a year,

 

plus 30% of any out-sourced MRIs, cat scans, and medical tests. I

 

think  they pretty much do anything in house, so that  should  be

 

covered.  Of course, the doctors could charge us a $5 co-pay  for

 

each visit. (Is that just for rounds, or each time they look in?)

 

I’m  sure there’s a logic there somewhere. I notice that  dealing

 

with people about bills over the phone is so much less  traumatic

 

now  than  it  was when I was in my twenties. I  wonder  if  it’s

 

because  we  have more money now, or because I  know  that  given

 

communication that we can work things out. Probably both.

 

 

 

Since  Aelfwine has been so tired, he hasn’t  even  bothered

 

trying to hook up his computer to the internet- this was part  of

 

what  convinced me that he was pretty much bottomed out.  He  did

 

get   to  watch  the  tape  John  Pomer  made  of   Kat’s   dance

 

performances, and when she went down this weekend, she did it for

 

him  to the tape. It was April Fools day, and she got  me  really

 

good!  I saw a thread hanging off her vest and went to  pull  it,

 

but  it  was the end of a whole spool of thread she  had  in  her

 

pocket, and she’d just used a needle to make it hang out where  I

 

would see it! I’m sure my response was most gratifying!

 

 

 

Daylight  savings  time  has, as usual, left  us  yawning  a

 

little  during the morning rush; but although I’ve been  enjoying

 

the early light (even during this stressful spring the beauty  of

 

morning light, the wonder of snow sticking to tree branches,  the

 

total cuteness of a baby bunny still fill me with great joy), the

 

time switch will probably help me to actually sleep until quarter

 

to six, which I’d been having a hard time doing once the sun  was

 

  1.  And AElfwine says he still wakes up at 5:45, when the  alarm

 

always goes off at home too.

 

 

 

Other items of interest- Fitz is trying to diet and exercise

 

more- maybe our concentration on health is contagious. (Willow is

 

also  working on not letting herself get run down, but  has  been

 

wonderful about helping- laundry, farm chores, cooking, cleaning.

 

On  the other hand this morning, which was better than  yesterday

 

morning  by  one less possum killing, she pointed out –  after  a

 

chicken had just defecated on her- that it was becoming  apparent

 

to  her just “how they had managed to convince all those boys  on

 

farms to leave their families, travel half way across the  world,

 

and  die.” I suppose not many people know the joys of  farm  life

 

these  days. Mark has gotten a job in Maine and is  coming  back.

 

Wolf  is  thinking  about an offer to foreman a  road  crew  this

 

summer.

 

 

 

Thank  you for your prayers.  And blood. Do let me  know  if

 

you or anyone else gives blood for Aelfwine so I can record it on

 

his chart.

 

 

 

I was asked to give this information again:

 

 

 

went Nicholas (AElfwine) Taylor

 

6D Rm. 73

 

75 Francis St.

 

Boston, MA 02215

 

 

 

617-732-4197

 

(do call before visiting to make sure he’s not too tired)

 

They are fooling around with the Boston Area codes, but  so

 

far  it  doesn’t  look like his  has  changed.  Wilton  Telephone

 

Company,  on  the other hand, seems to be going on and  off  line

 

occasionally.  Apparently  Stu Draper’s keeping several  sets  of

 

books  is  catching  up with him- to  the  inconvenience  of  his

 

customers. If you get a message saying we are out of service, try

 

our cell phones:

 

 

 

603-554-6415 and 6416

 

 

 

Bless you all!

 

Tchipakkan

“Faith is the innate knowledge of the fundimental rightness of all things,

whether positive or negative.” – Process Precept

 

 

 

 

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