* 3-19-2001 Week 2

Week 2                                             March 19, 2001

 

 

 

Big week. Starting with the current situation- Aelfwine  has

 

finished  the  induction (first run of chemo) and is now  in  the

 

first health rebuilding period. That was fast, wasn’t it?

 

To  recap,  (and if you don’t want to look for  last  week’s

 

letter) he’s got Acute Miloblastic Leukemia and he’s taking Ara-C

 

(Cytarabine)   and  Cerunidine  (Daunorubicin).  The   antibiotic

 

Cephtrasadine is what they are giving him for being  neutropinic,

 

but  he’s getting so many other things, I can’t really list  them

 

all.  It’s all that balancing act they are doing, giving him  one

 

thing  to  counteract the side effects of  something  else.  They

 

still haven’t put in the Hickman Catheter, because they want  him

 

to  be infection free when they do- but I expect that they’ll  be

 

putting it in soon. Funny isn’t it? They are done with the chemo,

 

but  they  want a “permanent” cath  in case they have  to  do  it

 

again and for the consolidation even if they don’t.

 

 

 

The social worker did get me a parking pass- right on  Jimmy

 

Fund Way, in an out-door lot where the van fits, and my foot,  if

 

it  hasn’t  gotten better, isn’t much worse, so the block  or  so

 

walk  is do-able. Driving up and down is also do-able,  since  my

 

night  vision has responded beautifully to the Bilberry  extract.

 

This  is  something  that  the pilots in  the  second  world  war

 

discovered, so if anyone has problems with their night vision,  I

 

can  say  that it has really helped me. And, again, I  feel  that

 

there  is no such thing as coincidence. I have long  known  about

 

Bilberry  and what it’s for, and have been planning on trying  it

 

for  a couple years at least- why did I decide to actually  start

 

taking it a month ago, eh?  Same with getting cell phones.  Being

 

on the road a lot, they have been SO helpful!

 

 

 

Doctor  DeAngelo  explained the chemo schedule to  me  thus:

 

Aelfwine  gets the three anti cancer drugs for a week  (days  one

 

through  7).  They call this “3&7” therapy because the  Ara-C  is

 

continuous  drip for 7 days and the Davnanbicin is on  the  first

 

three days. The because of his convenient proteins he got Mylotar

 

(Mylatarg?)  on  the fourth day. On day 14 they do  another  bone

 

marrow  check  and if there is still leukemia, they  start  again

 

repeating the same drugs on the schedule. If there is no leukemia

 

at  detectable levels, then they wait and do another bone  marrow

 

biopsy on day 28, with the same results (either repeat the  chemo

 

therapy, or be satisfied that it’s gone).

 

At  that  point they start looking for  the  healthy,  blood

 

producing bone marrow cells to regenerate.  Apparently a person’s

 

blood  can effectively be produced with only  10% of  their  bone

 

marrow cells active. Since the point of the chemo is to kill  all

 

the cancerous bone marrow cells, by killing all bone marrow, they

 

have  to  wait and see what’s left, and if  it  will  regenerate.

 

Apparently  experience  has shown them that  this  happens  often

 

enough to check for. (This is where your praying comes in- having

 

the leukemia gone and some healthy bone marrow left would be  the

 

best result.)

 

If  the leukemia is gone, which they claim to have  a  great

 

success  rate  achieving,  (although they  are  still  generating

 

numbers  on what the rate is with the new drug Mylotar), then  we

 

do  “consolidation”, and he lives happily ever after- another  30

 

years  in normal health they say. If not, then we might  have  to

 

look  to bone marrow transplants- first to his  siblings,  which,

 

because  he  has three, they figure would probably  result  in  a

 

match.  However, if this has motivated you to get tested  so  you

 

could donate bone marrow to someone who’s life could be saved  by

 

it, please don’t let anything I’d say stop you.

 

What’s  “consolidation”? It is a series  of very high  doses

 

of Ara-C (which they call HiDac) given three times, about a month

 

apart,  in hospital, on days one, three, and five of  the  visit.

 

I’m  guessing  the difference between the estimates  of  a  month

 

between  and  3  weeks between the 5 day  treatments  is  due  to

 

availability  of  beds,  and a lack of need  for  quite  so  much

 

precision in that aspect of the treatment. After that,  according

 

to  them,  he’s cured- totally. So probably no  tournaments  this

 

year, but maybe next year. Basically, the prognosis is incredibly

 

good.

 

 

 

Leukemia  means  “white blood”, and the nurses tell  me  the

 

blood  does actually get paler. People usually have about 3 to  5

 

thousand white blood cells per whatever unit it is they  measure.

 

When AElfwine was diagnosed these were at 28 thousand- but  those

 

2K   were  leukemic-  immature  blasts,  incapable  of   fighting

 

infections. White cells are divided into six different types, and

 

as some are “bad” and some “good” it tends to get a bit confusing

 

when one isn’t familiar with the jargon. (I will keep  attempting

 

to  learn  and pass on as much as I am able.)  The  useful  white

 

blood  cells  were basically nonexistent when  he  was  admitted.

 

That’s the term “neutropinic” which I couldn’t define last  week.

 

If  you have a WB count of under 500 you are neutropinic, and  at

 

high risk for any infection that comes your way. They’ve  managed

 

to get him back up to 270, which is still neutropinic, but  quite

 

an  improvement. His Red Blood count is hanging around 25-  still

 

lower  than the 40 one aims at, but up from last week’s 15.  This

 

is  what they give him blood for so often. I have lost  track  of

 

how  much he’s relieved. He’s still getting platelets,  and  that

 

count  is up to 270. His blood pressure is good. His  weight  is

 

  1. Frankly, I’ve lost more weight than he has. (10 pounds,  and

 

I’m  not terribly upset about it! I’m pushing protein  and  green

 

leafies,  and have started exercising a bit every morning,  so  I

 

don’t fall apart- and have totally given up sugar, so I  probably

 

would have lost the weight long ago if I’d done that before.)

 

He spent Friday to Sunday in the ICU. Basically since  there

 

were  all those cancerous white cells to flush out, they  had  to

 

keep pumping fluids into him so it wouldn’t clog his kidneys (not

 

to  mention the highly toxic chemo drugs). But while the  kidneys

 

like  it wet, the lungs like it dry. The extra fluid in his  body

 

tended  to leak into his already compromised lungs,  reactivating

 

his pneumonia. They had to do an incredible balancing act between

 

the  various medications to keep all the different  systems  with

 

conflicting  needs  all  working as well  as  possible.  So  they

 

decided  he needed the constant monitoring available only in  the

 

Intensive Care Unit.

 

One of the things he got there was extra oxygen, so that the

 

red  blood  cells he had could get the Oxygen to  his  body  more

 

easily. When I came in one day he had a mask on with a large tube

 

running  off to the wall and I suggested that he looked  like  an

 

elephant. “No,” he said, “I’m a jet pilot.” So for a while he was

 

getting  oxygen and we watched as he went from needing 100%  down

 

to 50%, 40%, then down to the nose hose that patients always have

 

in  soap operas. As of this morning though, they don’t  think  he

 

needs ICU anymore and are shifting him back down to the  oncology

 

ward  on  6C. It’s highly unlikely that he’d get  the  same  room

 

again,  so stay tuned and we’ll keep you posted to where to  keep

 

those cards and paper-cranes addressed.

 

One of the things the constant monitoring in the ICU  caught

 

was that an antibiotic he was getting was adversely effecting his

 

kidneys,  so  they  switched to a different  one.  This  is  good

 

because  since then he has been having trouble hearing  and  that

 

drug,  as  well  as the Lasix (diuretic) he  needs  to  help  his

 

kidneys  both can hurt your hearing, and may have been  having  a

 

synergistic  effect.  Now  only  the Lasix  is  known  to  damage

 

hearing, so they are hoping it won’t result in permanent damage.

 

 

 

Since he’s still nutropenic, he’s still going to have to  be

 

in a separated room with “neutropinic precautions”. The  hospital

 

approves of visitors- although in the ICU it was immediate family

 

only- and will be if he ever goes back again. (This is not to say

 

that  on Saturday when my brother Bob and his wife Cate,  and  my

 

uncle  Charley  and  Aunt Amanda who’d come  down  from  northern

 

Vermont showed up, they didn’t let them in, despite their  rules.

 

But  calling first is certainly reasonable. After all, some  days

 

he hasn’t slept and is very groggy, and other days he’s alert and

 

anxious  for  visitors.) When you visit you’ll have  to  wash  up

 

before  contact  (there’s a sink in the room).  Honour  remembers

 

from  her nursing training that it also helps if you  rinse  your

 

mouth  out-  even with water. She says it  reduces  the  possible

 

contagious germs for about three hours. It certainly wouldn’t  be

 

difficult to do that, although the staff have not suggested it to

 

  1.  No flowers or plants allowed, as I mentioned last week.  Any

 

food you bring in for him will have to be cleared with the staff-

 

I’m  pretty sure they just want to make sure that everything  was

 

prepared under sanitary conditions. Mostly what he is craving  is

 

fresh whole food- when a nurse shared some of her fresh pineapple

 

with  him  he  was  ecstatic!  But  I’m  betting  they’d   prefer

 

commercially packaged food. Maybe I’m too pessimistic. I  suppose

 

you could call ahead on that too. Brigham and Women’s is a  Pepsi

 

plant,  so he immediately asked me to bring in Coke. I  did,  but

 

reminded him that sugar is bad for you, and he hasn’t touched it.

 

On  the other hand, he got desperate enough in the middle of  the

 

night  once  to beg some Pepsi from one of the staff. “I  had  no

 

idea  how  low I could sink!” he confessed. It was as bad  as  he

 

remembered. I do note that in the family waiting room outside  of

 

ICU  (where you got to wait for permission to go in and  see  the

 

patients  2  at a time) almost everyone seems to have  a  can  or

 

bottle of soda in their hands. I’m sure none of them see anything

 

wrong with this either.

 

 

 

None  of  the  menus seem to have  liver,  or  leafy  greens

 

available.  Lot’s  of canned fruit, yuck. Lot’s of  aspartame.  I

 

have to wonder if the yogurt he asks for even has live  cultures.

 

(Not that with the antibiotics he’s getting the acidophilus would

 

live  through it!) For a few days there Aelfwine was getting  the

 

wrong  menus-  he got the “heart healthy” menu with  nothing  but

 

chicken  and  fish  (both  of which  he  avoids  eating  whenever

 

possible), fake eggs, skim milk, margarine not butter, etc.  Just

 

a  mix up- probably because with food they don’t care. With  meds

 

they  send  in  two nurses to check his wrist  band  against  the

 

number  on  what’s been sent up if it’s something  more  exciting

 

than  saline  or tylanol. I DO like to see them be  careful  like

 

that.  Maybe  I  should forgive  the  litigious  propensities  of

 

lawyers just a bit.

 

 

 

Also,   I’m   fairly   pleased   with   the   open-ness   of

 

communication.  While  it really cut into my sleep  on  Wednesday

 

night  (the night they shifted him to ICU and called me at  three

 

to  let  me know), I appreciate that they seem to be  telling  me

 

everything  as soon as possible. Let’s face it, any call you  get

 

from  the  hospital  in the middle of the  night  your  mind/body

 

translates to “He’s dead!” and it takes a couple of hours to burn

 

off  the  adrenalin. But it’s far better to have  the  occasional

 

false  alarm  than  to have to wonder whether  they  are  keeping

 

anything from you. Of course, no one told us about the damage  to

 

his kidneys until I pressed them about his loss of hearing- maybe

 

they  thought they’d caught it in time. Or maybe it’s  individual

 

variation  among the staff on duty. Overall, I am reassured.  But

 

cautious.

 

 

 

Our  friends have been offering help a lot, and during  this

 

first  week I’ve been a bit too busy to respond intelligently  to

 

those  offers.  But my intention is to accept whatever  offers  I

 

can. While he’s down in Brigham and Women’s, I’m going down every

 

other  day, which leaves poor Willow to do what three of us  used

 

to get done. (I suppose it’s closer to 1.5 people to three, since

 

I’m  home half the time.) BUT, what’s forcing me to  both  accept

 

and ask for help is that we have to get the house really clean in

 

these next 6-8 weeks (or 5-7 now) before he comes home.  Everyone

 

tells  me just give up whatever is unnecessary. I’d already  done

 

than  when  he had pneumonia, and as a life  style  choice,  I’ve

 

given  up any frivolous housekeeping. (Some would say  more  than

 

that,  and I’d be hard put to argue.) I’m getting the  impression

 

that  other people may do things they don’t want to do more  than

 

we  do. We’ve designed and arranged our lives so that we do  just

 

what we like to do, so anything we give up is something we REALLY

 

want to do. Oh, well.

 

Now  I  really  have to clean the closets,  scrub  down  the

 

walls,  scrub the floors, get rid of the junk,  etc.  Admittedly,

 

only we can do the sorting of junk- although we’d already  gotten

 

into the right emotional place to do that at Imbolc- but any help

 

with  the basic dusting, scrubbing, and maybe even some  painting

 

would be wonderful. Just let me know how many hours you’d like to

 

donate,  and  how  gross you are willing to get,  and  I’ll  find

 

something  from cleaning a closet, to cleaning the  refrigerator,

 

to  cleaning the goat’s stalls for you to do. We are making up  a

 

list of “things other people can do”, and will post it beside the

 

phone. I’m thinking we are going to need at least two weekends of

 

major   scrubbing  parties  to  do  what  I’d  consider   minimal

 

cleaning (scrubbing ceilings, walls, floors and all surfaces with

 

TSP  in  the  kitchen,  pantries,  hall,  diningroom,  baths  and

 

bedroom.  Thoroughly  dusting and vacuuming  the  livingroom  and

 

library.  And at least wiping down all the stuff in them. I  know

 

that’s  more than I’m able to do even with the kids help  in  the

 

time available. So- HELP! Call here with any offers and Fitz will

 

take it down if I’m not here.

 

 

 

On  the  phone  tree. The hospital wants the  nurses  to  do

 

nursing,  so they’d prefer that people come to me for updates  on

 

Aelfwine’s  condition, and so they only need to talk to  me.  The

 

second  tier  of  the  phone tree is going to  be  Alva  for  the

 

Taylors,  my sister Liz for the Richards, Walt Holland  in  town,

 

Linda Foley at work, and so far, my internet connection with  all

 

of  you who get this letter to the SCA and Pagan  community.  I’m

 

not  worried  about anyone in the third tier, that’s  what  phone

 

trees are about. Thank goodness for e-mail! It literally saves me

 

hours of repeating myself! Let people know that I have two  lists

 

for daily and weekly updates, and if they don’t have e-mail,  try

 

to find someone who does to keep them posted.

 

 

 

Aelfwine  is  in good spirits, especially today  since  he’s

 

caught up on his sleep, and is really looking forward to  getting

 

hooked up to the internet himself.

 

 

 

So, how are the rest of us doing? The weather has  continued

 

to  mock  me  by being perfect maple syrup  weather.  The  drifts

 

beside  the  roads are getting slowly smaller and darker  as  the

 

snow  melts  and leaves the sand showing. As we walk out  to  the

 

barn,  every so often the snow will suddenly give, having  rotted

 

from  below, and we will sink up to our knees, and parts  of  the

 

paths  are  beginning to show water at the bottom. Three  of  our

 

does have produced litters, so we may be able to sell some Easter

 

bunnies to Agway. Robin is shedding his tail feathers- I guess to

 

make room for the new ones coming in this summer. The geese  have

 

started laying.

 

 

 

Willow  and  I  had more adventure  (annoyance?)  than  we’d

 

anticipated  when  we  went to pick up the  Geo  at  St.  Josephs

 

Hospital.  It wouldn’t start, so Willow had to push and  roll  it

 

down the many levels of parking garage ramps from the roof,  then

 

we  drove around Nashua until we found a McDonalds with  a  phone

 

book they’d lend us, called a tow truck, and were able to pick it

 

up  from  the Garage on Thursday. We were SO happy  we  had  cell

 

phones!

 

Tuesday  we  had another snow day- or  rather,  sleet.  Star

 

hated  it  as  usual.  Kat expanded her  tunnel.  But  the  roads

 

improved enough that we were able to vote by late morning, and in

 

the  afternoon, UPS delivered Willow’s computer system.   (Sunday

 

she  went  to Walmart and got  a  scanner/printer/copier.)  She’s

 

still  having some trouble with the software, but  she’d  dealing

 

with it- thank goodness, as I am nearly computer illiterate. It’s

 

a  Gateway  computer, top of the line,  with  Windows  Millenium,

 

which is being really annoying, because it’s windows.

 

 

 

Wednesday  Willow  went to the dentist. We’ve  been  holding

 

off, waiting for her to either become a full time student and  be

 

covered by our plan, or get a job with coverage, but she  finally

 

NEEDED  to see a dentist, so now she’s having to deal with  three

 

years of not. Since the Geo wasn’t back yet, I didn’t get down to

 

the  Hospital until late- I am getting a good deal of  experience

 

with  traffic  at different times of day- rush hour really  is  a

 

good time to avoid the major roads! I am SO glad I don’t have  to

 

deal with it regularly.

 

 

 

On  Thursday I did errands as usual. But the first  one  was

 

picking up the Geo, then Willow and I split the rest. Besides the

 

usual,  I picked out a dryer at Bob’s Appliance, and set  up  for

 

getting propane installed in the house. (I also make seemingly dozens of

 

phone  calls  to Social Security, to the IRS, to the  Lawyer,  to

 

Doctors,… I am telling you I wouldn’t keep it straight  without

 

taking copious notes. I’ve set Aelfwine up in the hospital with a

 

notebook for taking down notes on what’s happening to him day  to

 

day-  of course, mostly it’s me and whoever else is visiting  who

 

takes  them. When he hasn’t had good sleep, which is  too  often,

 

he’s  too foggy to talk, much less read and write. We’ve  got  it

 

indexed-  questions to ask the doctors when they come  by,  phone

 

numbers,  treatments, etc. If you visit and something  you  think

 

might want to be remembered later happens, do look around for the

 

notebook-  I’ve  taped a photo of Aelfwine in the last  round  of

 

Crown  Tourney  on the cover so that the nurses can see  what  he

 

does in real life. After a couple of days I realized that if  all

 

my notes were in that notebook, it was going to be hard to update

 

all  our  supporters,  so  I  got  another  for  myself-  similar

 

categories,  questions, updates on his progress  and  treatments,

 

phone  numbers,  a  to-do list, notes from  talking  to  all  our

 

experts.

 

In the evening, since we already had the tickets, so we went

 

down to the North Shore Music Theatre (Willow, Kat and I) to  see

 

Midsummers  Nights Dream. Star stayed behind and did  the  chores

 

(he’s  beginning  to learn to milk- Tinuviel is in her  last  two

 

weeks  before  drying off, so we are letting him learn  on  her).

 

Steve  Raskind met us there and used Aelfwine’s ticket. It’s  not

 

one of my favorite Shakespere plays, although Kat says it’s hers.

 

The  main  characters were nothing to write home (or  70  people)

 

about.  But  I have to say the Pyramus and Thisbe play  within  a

 

play  at the end was fantastic- crude, but we were  laughing  out

 

loud! (The high school kids from WLC always go down to see  their

 

Shakespere offering every year- they must have loved it.) We  are

 

hopeful that Aelfwine will be able to use his own tickets for the

 

rest  of  the  season. A big surprise was  seeing  Jeanne  Steele

 

there, she came up during intermission and volunteered to help me

 

do  the  taxes. (Wonderful! I’ve never done them myself,  and  we

 

have  the  farm forms, the Cabochons business,  the  income  from

 

selling the old house, my trust fund money- argh! Boy am I  going

 

to need help!)

 

Thursday was Aelfwine’s “Day 4” for Chemo, and that was  the

 

Mylotar day, so Dan, who was visiting, got to watch the  expected

 

reaction  of fever chills, and watch them treating it  for  that.

 

Poor both of them! By the way, he’s up to 64 paper cranes.

 

 

 

Saturday  was  town  meeting, and I missed it.   I  kind  of

 

wasn’t’ ready for the outpouring of support and affection that  I

 

expect  I  would have encountered- and besides, only  being  here

 

every  other  day, when I’m here, I’m REALLY busy. On  the  other

 

hand,  when we went to vote, I took some cookies Kat and  I  made

 

for the bake sale, and the first samples of the pewter figures of

 

the Laffayette Artillery that Fitz had gotten cast by an  English

 

miniatures company, had arrived. So I could show those samples to

 

Walt Holland and Edna Wooster. The original Laffayette  Artillery

 

wore top hats; seems it was a military style first.  Interesting,

 

eh? Our votes didn’t tip the difference. Lorraine Crosby won  the

 

election  and  will be the new Selectman. Well,  if  she  doesn’t

 

catch  up on the mortgage payments soon, they’ll see a  selectman

 

getting foreclosed on! I am NOT going to have people just  giving

 

us  money to help get through this rough stretch, and let  people

 

who OWE us money just welch on their obligations.

 

 

 

Dan  and  Brad came up on Saturday to have  the  traditional

 

dinner  of green Corned Beef and cabbage. What we didn’t  realize

 

was   that   Brad  doesn’t  care  for  corned  beef   under   any

 

circumstances.  Luckily  for him, just about the same  time  they

 

arrived,  Minna and Ken dropped off the dressed out  rabbits  for

 

us, and a pot of Venison Stew! So Brad ate that instead (and  the

 

rest of us had venison stew on Sunday). When one eats only  whole

 

foods, it takes longer to make dinner, and it’s wonderful to have

 

had several people offer to bring supper for us- especially  when

 

we have to avoid wheat, sugar, tomatoes, (cow) milk products, and

 

eggs.  That’s rather hard to work around! People  are  wonderful.

 

Anyway, toward the end of the meal, Brad actually did venture  to

 

try some, as odd as it looks. And it does. Dan has died her  hair

 

to  match  his,  and they really look like  brother  and  sister.

 

(About  the  same red as it was a few years ago.  It  looks  very

 

natural.)

 

 

 

There’s  a house in Wilton I pass every other day, which  is

 

being refurbished. The sign out front said Custom Modular  Homes,

 

so I figured that they’d tear down this neat (if delapitated) old

 

house,  and simply replace it with a pre-fab. I am not sure  why,

 

but  somehow  I am much relieved that they  simply  stripped  the

 

clapboards off, and are insulating, and working on the roof, etc.

 

In some of the hidden reaches of my subconscious, that house  was

 

associated with Aelfwine’s problems, and seeing it being  brought

 

back  rather  than bulldozed reassures me. In a similar  leap  of

 

logic, the Foot and Mouth Epidemic in England is resonating  with

 

me  right now. Probably because to save the wildlife  of  England

 

they have to kill off huge numbers of healthy cattle, the way the

 

chemo damages healthy tissue in order to save Aelfwine’s life.

 

I  really  am feeling a lot more sanguine about  the  chemo-

 

therapy.  I  don’t know whether I’m just fooling myself  (in  the

 

best  traditions of human beings dealing with whatever they  have

 

to  deal  with),  or whether I have simply  been  presented  with

 

enough evidence that I am comfortable with it. But while I retain

 

my general skepticism, and firm preference for safer therapies, I

 

am confident that this is the best available therapy for Aelfwine

 

in  this  time  and place (and do not feel motivated  to  try  to

 

overcome that confidence).

 

 

 

I haven’t had time to hear much about what’s going on in the

 

outside  world lately. Wolf is hanging sheet rock in  Washington,

 

and  has a line on some cheap land in New Hampshire  through  his

 

boss.  They are still hoping to move to West Virginia  where  the

 

tax situation is better, but if it’s cheap enough, they could  at

 

least  have the camper on their own land until they move.  Fitz’s

 

daughter  called and thinks that his mother may have died-  lines

 

of communication are down so completely that it’s not  confirmed,

 

but only likely.

 

 

 

Still, financially, so far so good. Apparently if you get in

 

a  bike accident or need some minor medical help,  the  insurance

 

company  is  going to challenge the $500 or whatever you  put  in

 

for,  but  if  the Dana Farber asks  for  multiple  thousands  of

 

dollars-  no  problem! The medical community considers  that  the

 

Leukemia  started at the time of the start of the  pneumonia,  so

 

two  months  of the five before disability kicks in  are  already

 

over.

 

 

 

Thanks  for your support, and keep praying. I am  sure  it’s

 

helping.

 

 

Tchipakkan

 

“What we see depends mainly on what we look for.”  – John Lubbock

 

 

 

 

 

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