*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,




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






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






(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!



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

whether positive or negative.” – Process Precept





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