*3-26-2001 Week Three

Week 3                                      March 26, 2001




Today the day 14 biopsy to see whether the first run of chemo

killed  all


the  leukemia cells is scheduled. Currently this letter is going out to



ninety  people,  and there are about thirty-five who are on the  daily



list. I am SO happy to have e-mail to spread updates!




As  with  when  we had the house fire- suddenly we  were  meeting



everywhere who’d had their dryer catch fire on them, so now we are

meeting all


sorts of people who know someone who had leukemia and is better now.

Maybe the


people who know someone who died of leukemia just don’t mention it, but



seem to be an awful lot of people who’ve recovered from leukemia. One of



is the dietary intern, who had it five years ago, and is fine now. One

of  our


friends  (Veleda) says she has six relatives all of whom got leukemia

and  are


better  now,  including  her  80 year old grandmother. Or  maybe  it

was  six


relatives with cancer.


I  bumped  into Linda Buttrick (who had all of our kids at  one

time  or


other down at Lyndeboro Central. She had a double mascectomy in January

but is


now  considered cancer free, and may be able to go back to school after



vacation. Kathy Nahass, though, another one of our very favorite LCS



who  had breast cancer last year seems to have new lumps. Somehow I find



very  disturbing.  Probably  because,  like  us,  Kathy  is  doing



everything  she  can think of to fight the cancer- Essiac, organic

food,  (of


course,  she’s doing vegan, all raw food- which I suppose we would try

if  we


thought it would work, but personally, we tend to omnivorous)- and she’s



having  some. Linda said that basically she’s going day to day and that



found  that  she’s  out of control with everything except  her  diet

and  her


attitude.  I  guess  that’s  a pretty good  description  of  what  we’ve





Kathy told me that they predicted to the day what day her hair was



to  fall  out (with us they’ve been doing the usual “different  for



people”  “it depends on the circumstances” type responses. Armed with



story I asked again, and this time I got the response that hair starts



on  day  21, and takes about 5 weeks. And, which no one had  told  us



often  does not completely fall out, but instead leaves you patchy!

Yuck!  No


wonder some people just shave their heads when it starts to get it over



Somehow patches of 15 inch hair sounds uglier than patches of 3 inch

hair.  Or


maybe not. Ick, and I’d had the impression that it was faster than that.




But that underscores one of the things we have learned- there is a

LOT of


variation from nurse to nurse. (Not that this is surprising, considering



it’s  true for every human on the planet.) Last night Susan came in  and



sure  that he knew about every change in his medication, speaking

loudly  and


clearly, and asking questions to make sure he understood. With others we



to drag every bit of information from them. Some come right in when he



some  say  “yes” on the intercom, then we don’t see them until the  next



they’d  come in anyway. And you know Aelfwine, he always figures that if



haven’t seen to his problem, there must be a real emergency somewhere

else, so


he doesn’t call back to see what’s holding them up.


One  problem  that  bothers me is that while we have  these  big



precautions,  they  never seem to realize that he’d rather like  to

wash  his


hands  after using the urinal or commode. Maybe he can’t catch  anything



his own waste, but even so- GROSS! I complained about it, and they left

him  a


pack of adult baby wipes. But when I’m there, I get him a hot soapy



and  towel, which I think must clean better. I’ve also noticed that

when  I’m


there,  he  eats  more- his usual grazing, a bit of this, a bit  of

that.  He


generally  orders the banana or orange that’s the available whole fruit,



the fruit cup, plus the seasonal fruit cup, plus the cheese and cracker



plus  yogurt- along with the soup and hamburger he’s been getting. He is



insistent that everything be cooked through, and figures that even they



mess up a hamburger. So, while he doesn’t eat much at the meal, he eats



and cheese all day.




I  note  with  pleasure that so far AElfwine has  had  neither

pain  nor


nausea-  both of which are associated with cancer and chemo. While  he’s



weight,  it  has more to do with disliking the hospital cuisine  than



Sometime  the food is fine, and sometimes not. (I’ll give them that it’s



to  cook  for  700 at a time.) As he pointed out, sometimes  the

broccoli  is


great, and sometimes he puts his fork under it and lifts and it drips



the tines. And he and Megan agree that hospital squash is evil. Still,

he says


that even they can’t really wreck a hamburger (and has learned to write

on the


menu “a slice of onion please?”) and gets one.




On a brighter note, not only is Aelfwine getting the hang of

filling  out


his menus so that (usually) he gets what he wants, the dietitian says

that  we


can  bring him food- “Anything he wants.” (although she cautions

against  raw


milk until his immune system is back to normal. Apparently she believes

that a


person  with  a  healthy immune system can protect itself  from  the



dangers  of raw milk, but that without the immune system to detoxify

it,  raw


milk is just a seething vat of dangerous microbes.) Oh, well. So we’ll

be able


to  bring him fresh pineapple, or kiwis, whole grain bread, liver and



nuts,  and  green leafy vegetables. (just not all at once)  Some  people



brought him candy- that’s been labeled food for guests, since he’s not



  1. If you visit, feel free to eat it, because I’m really not up for

taking it


home to the kids, and it would give me the creeps if the nurses were

happy  to


eat  it.  (I  just keep thinking that they should know  and  care  more



nutrition.)  On  a personal note, apparently I’ve found the “trigger”

for  my


metabolism.  It  is simply sugar. (Which I gave up in  sympathy  for



giving it up for his health.) In this past two weeks, as our man dealing



melted vegetables and rubber meats has lost 11 pounds- I have lost 15.

And all


I’ve  done  is  give  up sugar. I’ve been stuffing  my  face  with

meats  and


vegetables  and cheese and fruits in a desperate attempt to keep  my



and health up- but I am losing weight. (Or, as Wolf suggested, I’m

worrying it


off.)  Except  that I don’t feel worried at all- harried,  overworked,



yes. Although I not with satisfaction that although I’m exhausted when I

go to


bed,  I  wake up fresh and rested in the morning, so the sleep must  be



And,  I HAVE started dreaming about the hospital. Well, I guess it’s

good  to


know  that the sugar is a specific poison for me. I’m going to  miss





I had a very strong deja vu moment at the hospital yesterday. I



deja  vu as coming up on experiences that you’ve seen before when you



out  various  future  paths  while you were asleep. Of  course,  this

is  not


provable, but it’s as satisfying an explanation of deja vu as any. And

deja vu


is  basically the experience of remembering something- people get

creeped  out


because they are remembering something that they intellectually know

that they


can’t  have memories of, but if it doesn’t bother you, it feels  exactly



any other memory, so I figure that that’s what it is. So astral time

travel is


a very easy explanation for why you’ve been there before. Anyway, I

found that


reassuring. If we are on a path I’ve explored before, then I assume that



a  path that I didn’t subconsciously work very hard to direct our  lives



from- thus one more reason to expect a positive outcome. It’s the

Pollyanna in


me (as well as the Hans Holzer).




Now  that  he’s out of the ICU, visiting is back to normal. I

think  the


hours  are  1-8, and he still has neutropinic precautions-  which  means



before contact and don’t visit if you’ve been exposed to anything



Also,  call ahead to make sure he’s not tired. After all, if the biopsy



(monday) shows any cancer cells left, he’ll be back on chemo again. And

if you


call ahead you can try to get him to yourself. I think most of us really



him to ourselves (if I’m there and you want some private time with him,

ask me


to  take a walk- I understand, and I see more of him than anyone  else).



still not allowed flowers, but you can give them to me if you like.


Dan’s been visiting him, and left a very funny story about their



Ree’s  cat. There was another big storm predicted this week, but it



as  rain,  rather  than  another foot of snow, so didn’t  cause  me  too



problems- but it caused significant flooding in a lot of low lying

areas- like


Winchester, where my father and sister live. And in Medford, where Dan



Their basement flooded, but Ree’s Demon Kitty was unaware of this- he

was just


in the habit of dashing between Dan’s legs every time she opened the



stairs-  obviously intending to make her fall to her doom- or at least

run  in


circles  around the basement for awhile. This time, rather than  a



generation  of adrenalin in his person’s roommate, he achieved  a



splashdown in the deep water at the bottom of the stairs. And Dan

wouldn’t let


him back up until he dried off. Since then, when she opens the door, he



tried to trip her once.


Another  thing  to be aware of is that when he gets  platelets,  he



Benedryl  (ever  since that time he started to get hives when he  was



platelets). I don’t know if they are giving him a super high dose, or if



having  an  unusual reaction, but every time they give it to him, he

goes  to


sleep  within ten to fifteen minutes and sleeps for about a half hour.

So  if


while  they are visiting they give him platelets, and he falls asleep on



he’ll  be up again in about a half hour, you can wait, or go downstairs

to  Au


Bon Pain, which has some really great croissants, and come back in a

half hour


and he’ll probably be awake again.




Sadly,  while  they encourage people to give platelets, you

couldn’t  do


that  in that amount of time. Apparently as opposed to giving blood,

which  is


available  at  blood  drives all over the place, and only  takes  about



minutes,  when you are giving platelets it takes about 90 minutes.  They



your  blood out, run it through a “platelet strainer” and put your blood



in you, with a few less platelets. It’s very useful for them, (and

people  who


need them!) but obviously even less people are ready to put in that

amount  of


time than even are willing to give blood, and you have to make an



and have it done there in the hospital. Obviously, it would be great if



would  do that, but it’s a really personal decision. We had no idea  how



blood  he  was  going to go through. One tends to think  of  operations



someone  gets a couple of units- after all, the average person only has



in them. But due to the length and effect of this illness, he’s going



a LOT of blood products.


Apparently,  generally one’s bone marrow constantly makes

platelets,  and


red  blood cells, and the various assorted types of white blood cells,

all  at


different  rates;  and this gives us a constantly replenished

collections  of


cells to use. I’ve heard 7 weeks for red blood cells, and yesterday the



told  us  that healthy people replace their platelets every 72  hours.



that  platelet  production is the LAST bone marrow activity  to  resume



chemo- so he’ll be getting them for some time). With Aelfwine, every



they  check his blood levels and then add whatever he seems to need that



They’ll  know he’s getting better when those levels start going up

which,  by


the  way, is supposed to be starting today. Watch this space for

updates,  as


they  say. (oh, and last week I said that they were maintaining his red



at  around  25, they point out that they maintain at 26- apparently

that  one


point  is  important  to them. Probably the difference between  just

low  and


dangerously low.)


He’s  still  getting Oxygen, probably because of that lowered  red



count making it harder to deliver oxygen to his body parts. That they



constantly  too, and give him as much or as little as needed to keep him

at  a


good level. Recently he’s been getting it through a more comfortable



which  he  calls a “bozo nose” (as opposed to the pilots mask),  but

which  I


think looks more like a piggy nose.




Philosophically, I have to notice that those things which most

worried me


about  hospitals seem to have been changing. For many years, hospitals

had  in


common  with  boot  camps, religious cults, and any  other  organization



wanted  to completely indoctrinate you, a lot of dehumanizing

techniques.  But


things are apparently changing- slowly, a large hospital is still

plagued with


the  handicaps  of any large organization, but things are  much  better.



encourage the hospital patients to wear their own clothes if they want

to-  it


keeps them from feeling like a patient too much. Aelfwine is somewhat



to burden me with laundry, but I think that psychologically it’s a good



They are wonderful about calling us by our names and introducing

themselves. I


am  very pleased that they have a Reiki practitioner who has started



Aelfwine and will be coming twice a week while he’s there. They are

polite and


seem  interested  in the crystal therapy and herbalism-  not

dismissive,  nor


patronizing. And they are very flexible about schedules.


I  would  prefer to be told more about possible side effects,  but

I  am


getting the impression that they don’t tell us because there are SO many



they  couldn’t  cover  them all, and if they did, we  might  develop

some  by


suggestion.  Besides, considering the number of medications he’s

taking,  the


range  of side effects is huge (as I’m learning from the many survivors



meeting).One of the various people who know someone who has had leukemia



that  her  friend  lost her ability to read while she  was  undergoing



Luckily, that hasn’t happened to Aelfwine.




Currently the most worrisome side effect is the kidney damage which



detected last week and, seeing the antibiotic (tobermycin) they were

using  at


the time as the most likely culprit, they switched immediately. They say



reversed  itself,  and I hope so, but the output of his kidneys  is

still  an


alarming color- but getting better. Friday it looked very like coke,

Sunday it


only  looked like Hawaiian Punch- or, sadly, Red Zinger tea. (He had a

cup  of


Zinger on the table when the orderly came in to empty the urinal and she



what it was- once we’d noted the similarity he said “I’m not going to be



to  drink  that now.” But the nurses say it’s OK- he’s just flushing

lots  of


toxins.  They  check  it for blood, and at least are not  admitting  to





Apparently another side effect of that particular antibiotic is



and  he has gotten a lot more deaf. The problem with this is that he has



hard  of hearing for so long that he has habitual coping techniques-



from  context, partial lip reading, etc.; coupled with his preference

for  not


liking to ask for help this is causing some problems. He misses a key

word out


of about every other sentence with me when we are talking, and I worry

that  a


similar miscommunication with the medical staff could result in a more



problem.  They  suggest that the deafness will probably  be  temporary,



would  be good. But I’ve asked if they could loan him a hearing aid

until  it


does  get better. The problem with that is that they can’t figure out

how  to


take him to the hearing test area of the hospital without exposing him

to  the


hospital  germs.  When  they  were transferring him down  from  the  ICU



carefully  made  him  use  a face mask that sealed  out  the  normal



atmosphere,  because they know that a lot of rogue germs can  migrate



  1. So I’ve taken my mothers old hearing aid down to him (it the

earphone  not


the  stick-it-in-your-ear kind) and that helps. If he’s not using  it,



him to.


Another thing I have to worry about a little is them taking his odd



of  humor wrong. In the ICU he was talking about “the monster under the



“I can feel him reaching up and grabbing my ankles.” Well, at first I



that  he was hallucinating- but it turns out that he was making a  joke



the  leg  massaging  greaves that they had fitted him  with.  When  he



walking around, they worried about clots forming, and they have little



sheathes  that  go around the patients legs, which get air  pumped  into



every so often to automatically massage the legs and enhance

circulation.  Now


if  it  took ME a bit to figure out that he was just trying to joke

about  an


unpleasant situation- how do you suppose the nurses took it?




One  odd thing we’ve noticed is that he can talk for hours to

someone  in


the  room, but when he gets on the phone, he starts coughing. It’s  like



allergic  to  the phone. If you’ve called, you’ve probably noticed

this.  Our


friend Lugh/Dennis (an EMT) has provided an answer to this mystery- our



exhalations generate a drop of air pressure just outside our mouth. When



is something occupying that space, it can cause your subconscious to

react  to


a  theoretically  dangerous  loss of breathable air.  It’s  called  a



effect, and he says that most of us cough more on the phone because of

it, but


we just don’t notice it.




We have settled into the new schedule fairly well. I go down every



day-  it takes about two hours, depending on traffic and if I have to

get  gas


(about every three trips, and with the van, it takes about 20 minutes to



it!) I’ve kept as much as possible of our old schedules- writing the

letter on


Monday,  doing  errands on Thursdays. I insist that we still  have  our



dinners  with protein, two veg, salad and starch. The kids have now

divied  up


the  dinner making- each of them making one dinner a week, on the nights

I  am


down in Boston. I see no reason why that shouldn’t work well. Now I’ve

added a


daily  update on AElfwine when I check my e-mail in the morning.



we have to modify the base schedule, but so far it’s working pretty

well.  The


kids are helping with the chores- Star has actually learned to milk the



so  he  or Willow can do it if I get back too late. And  those  dear



dragged  the dead goat up from out back so I can dump it on the way down



morning.  And  Wolf has offered to clean the shovel out barn for us-

just  as


soon as he can get his truck in. Whoo-hoo! One less thing to do!




Kerensa and Brianna came over on Tuesday and butchered Mushu, the 2



old  wether. Sadly, he was so fat that it made it almost impossible to

get  at


most of the meat. I guess we’ve learned a valuable lesson. I suppose I



have  realized  that he was a eunuch, and since he had horns he  was

able  to


bully his way to the food first and longest.




Minna  is taking the hide (and he took the head) and she’s  started



tomato  and  pepper and other seedlings for me. After long and  deep



we’ve  come to the conclusion that these are not circumstances under

which  we


want to stop eating fresh, organically grown vegetables- so while I have



through  my garden list and removed all the high labor ones, like

onions,  and


the  experimental one’s like skirrets, we will still be having a  garden



year.  I’m  looking at lettuce, tomatoes, peppers, scallions,

cucumbers,  and


radishes, cabbages, butternut squash, parsnips, carrots, beets, turnips,



swiss  chard, broccoli, and cauliflower, also a few peas and beans,  and



and kale, and some garlic tucked in among the other stuff. Maybe some



and  melons, if I can get some seedlings. I feel a need for some flowers



year, so I’m thinking sunflowers, jerusalem artichokes, nasturtium,



and  zinnias. Also dill and parsley, I don’t think we can do without.

But  no


celery,  spinach, brussles sprouts, onions, or potatoes this year, sigh.



year… Maybe I’ll try plastic mulch and see how that works.


I’m  hoping  that I can organize a couple of weekends where  6-10



come in and scrub the kitchen, diningroom, baths and bedroom floor to



(and  add a coat of paint if they are efficient) during april, but I

have  to


admit that people have their own lives- and none come with a whole lot

of free


time, so we’ll just take it as it goes.




Monday I went to the lawyer, and we are getting wills, and durable



of attorneys and all the various documents we should probably have had



but  I am getting SO organized now! The Co-op (high school) had a  bomb



last week- some kid had left a message on a computer, so they had to

clear the


school  and  search it with dogs before deciding that it was a  hoax.  I



Willow  and  her  friends (and as I think of it, kids when I  was  in



always used to talk about blowing up the school- but no one took it



and it wasn’t serious. If the kids CAN’T talk about blowing up the

school  and


hiding the bodies of teachers who are less than fair- then what are they



to  do with the tension that is natural in that situation? Any situation



the  power  is so one sided is tense, if repressed, I think  it  may



force  it  into more violent expressions. If they can’t remember  being



perhaps they could just look at the body of folk music that has had

those same


themes for centuries!




I’ve  got  the  dryer being delivered this Tuesday,  and  in

theory  the


propane  being  hooked up during the week. I am a bit dubious  about



Propane, they were so slow about getting back to me with the estimate.


Willow has been loving her new computer- loving it so much in fact,



she  seems to have developed carpal tunnel syndrome in one wrist. At

least  it


hurts-  and  so  does her elbow. I have advised her to go back  to

using  the


keyboard  in her lap if it doesn’t hurt that way. (and knock off the



solitaire).  The kids were playing the game Zoombenies until Willow got



and hid it on them. I must admit that computer’s make great mental





Kat  had  performances of the Unique Dance Troop on Wednesday

night  and


Saturday  night. Both Megan and Diana managed to get too Wednesday  (and



both  remembered  flowers, which is good because I decided  that  I



bother in my rush to get back in time). I was still late since we’d

thought  I


could both drop the Geo at the garage with Willow before going, but it

died in


the two miles between here and there, and pushing it the rest of the way



the  van took long enough that I missed the beginning of the show. I

have  to


say  that  I was favorably surprised. Of course, they aren’t as  good

as  the


dancers one sees in shows or movies, but they were pretty good. Very

good  for


junior high girls without a whole lot of training. John Pomer made a

video  of


that  performance, and so Aelfwine will be able to see it. The

performance  on


Saturday was in conjunction with the Community Talent Show, and they

were  the


last act, so John Pomer brought her home (and I went to sleep). She said



they had a hard act to follow- a group who did the bit with dressing

your legs


as a whole body, and your torso as the huge head. Kat was of the opinion



it  was the best thing on the schedule, and very funny. I reminded her,

in  a


world  before recording technology, that that was about all the



that  most  people  had available. Time to be thankful  for  movies,



music, etc.




There was warning of another big blizzard on Thursday, but it only



instead, so while I hear that Winchester (where my father and sister

live) and


lots  of other places had flooding, we got only a dusting of snow, and



rain  to  melt  away about half of the snow. Of course, it  still  looks



Currier and Ives out there- but the stream in our back yard is back,

which has


made the geese and ducks very happy.




I  went to the dentist on Thursday- got an old root canal reamed

out  and


the  new preferred inert stuff put in. About three hours in the chair. I



falling  asleep. If not for the rubber dam, my mouth would have  fallen



and  then what would he have done? (I know, woke me up.) It still

aches.  Dr.


Roy  loaned  us his booklet on dealing with post-chemo dental hygiene,

and  I


took it down Friday.


Aelfwine  and  I  went over the mail- lots of forms  from  all

sorts  of


agencies  from  the IRS to Social Security, some for the doctor to  fill



some  to be held for the social worker. He’s happy to have something to

do-  I


think  I’m going to be leaving most of the magazines down there for  the



couple of months- he’s got too much time to fill, and I know I’m not

going  to


get  around  to reading them. If he doesn’t go back on chemo this  week,



going  to try doing the taxes himself. He really prefers doing something



ordinarily do, or read, to reading dime store novels- me, I’d be going



the library- but then, I bought most of it, so it’s obviously stuff I

like. He


prefers his technical stuff- but also history.


Also,  the  Global/Granite  company president is  loaning  him  a



computer  so he can stay in touch with the office. As he pointed out,

if  you


figure  his  salary is intended to pay for 40 hours a week, then

normally  he


works  an hour or two a day for free anyway, so if he works an hour or

two  a


day,  that’s  no difference. Not only will it help them, it’ll keep  him



falling behind. I’m pleased because the doctors were suggesting



for  the  months  of Consolidation, and I think it’s high  time  that



developed a tele-commenting plan. This should allow them to work out the



in one. As Aelfwine points out, while having a disability check is

better than


no check, getting back to full pay will be better than Disability.




I’m still kind of disturbed about the news on Foot and Mouth from



Part  of me feels that it’s appropriate to take some pretty severe

actions  to


protect the wildlife, but another part of me feels that if they’d just

let the


disease  go, each successive generation would have more and  more



and  it could turn into a less severe disease. This last week I heard

lots  of


stories  on World Tuberculosis Day. TB is now the disease that kills the



people  in  the  world- they said. (What happened to Malaria?)  But  the



problem with TB is that they keep treating poor people who are not

capable  of


taking  the  treatment correctly, which has led to an increase  in



resistant  TB. It’s horrible to have someone die of TB unneccessarily,

but  I


think  it’s worse to undertake a systematic plan that by it’s very

nature  is


more likely to make the disease more virulent to the world population,

than to


let those poor people die. And I was really irritated to note the



of  the  sheep  herd in Vermont. Conflicting tests  have  led  to



results, but the government, in it’s power, is able to seize this

property and


kill, then autopsy the bodies, rather than to test and then kill the

one’s who


are sick. As I recall, this is a special breed which the Vermont herders



hoping  to use to improve American herds. And what about the various

herds  of


ancient breeds in England? There are herds in the proposed “sanitation”



that contain the ONLY living examples of several breeds of cattle,

sheep, etc.


And they are healthy. So we make several varieties of animals extinct-



protect  the economic interests of the food producers? Seems to me that



should be ways of carefully transporting some of these rare breeds to



island isolation areas and watching them for the months or years

(whatever  it


takes)  rather  than just slaughtering them. There is NO amount  of

money  to


compensate  the world, much less the owners, for wiping them out. For

all  we


know, some of these rare breeds may be immune to this disease, and

that’s  why


they  are healthy. Wipe them out, and you may make some yet to  be



treatment impossible.




Thanks  for  your support, blood and prayers. Do let me know  if

you  or


anyone  else gives blood for Aelfwine. I’m making a chart in his room,

and  we


are aiming at at least 48 donations. Especially if any of the donors are

B- as


he is. He feels SO badly about not being able to donate any more. (and I



to  assume that this rule is because they assume that some of the  blood



he’s  gotten  is contaminated with HIV, hepatitis or something- but

they  can


deal with that later. First, cure the cancer.)




“Any sufficiently advanced technology is indistinguishable from a rigged demo.”  – James Klass







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