*Week One March 12/13, 2001

Well, it’s been a memorable week!               March 12/13, 2001




Of course, the big news is that Aelfwine is in the hospital,


receiving chemotherapy for Leukemia. If that seems sudden,  well,


it  was.  He’d finally decided that seven weeks was too  long  to


take  to recover from the pneumonia, and got an appointment  with


the  doctor  on  Friday morning on the way to  work.  The  doctor


agreed,  X rayed his chest and took some blood to test.  At  noon


Dr.  Quirbach  called  to  say  that  Aelfwine’s  `blood   showed


Leukemia,  and  how  soon  could he get  to  Nashua  to  see  the


oncologist?’ Since his work is most of the way there, he was able


to get there within about an hour, and at two, was talking to Dr.


Posner the oncologist from St. Josephs.


Of  course,  being  within fairly easy  range  of  the  Dana


Farber, THE cancer hospital in the U.S. (or at least that’s  what


they  tell us- of course, so did Lisa when she was  dealing  with


them,  which  is  more believable)  they  transferred  him  there


“immediately”. (This gave us our first introduction to  “Hospital


Standard  Time”: waiting for about three hours for  an  ambulance


that  a nurse reminded us every half hour was going to  be  there


“any minute, or at least within a half hour”.) They wouldn’t  let


him  drive himself, so Willow and I have to pick his car up  from


their  parking  garage as soon as we can get to  it.  Not  during


today’s ice storm…




Now  to divert, a moment, to my usual opening of the  letter


with  a weather report- on Tuesday we had a wonderful storm.  The


weathermen predicted it nicely, and everyone had a chance to  get


ready-  most  of  the schools were  canceled  and  many  offices-


including  Aelfwine’s. We had a MARVELOUS day playing  cards  and


board  games,  playing  the piano and generally  being  lazy  and


familial.  The accumulation was, well, more than the last  storm-


somewhere  between two and three feet, with lots of  drifting  to


make  that measurement difficult. The geo was mostly hidden,  and


the  van was nicely drifted in. Kat didn’t have school  Wednesday


either, and Jon’s bus company decided not to try it, although his


school  had  a simple two hour delay. So we all dug  like  crazy,


(except  Aelfwine, who was winded after a couple  of  shovelsful)


and got Star to school and Aelfwine off to work.


Friday  there was a second storm coming in, so when  he  was


transferred  to Boston, rather than have Aelfwine worry about  me


driving  in  it, I went home- leaving him still waiting  for  his


ride,  and didn’t follow him down and watch him get  checked  in.


The  Friday night snow was only about a foot, so while it was  no


fun to drive in (even just back to Lyndeboro) it only took  about


an hour to dig out of the next morning.


Willow  had a workshop for the Renn fair. Luckily,  Michelle


and  she were car pooling, so that wasn’t interrupted. She had  a


great  time, she said that she hadn’t laughed so much  in  weeks.


This  weekend they were working on character  development.  (They


STILL  want her to wear a pot on her belt so that people will  be


able to tell she’s a cook. This argument will probably go on  for




Also  on  the weather, I understand that it’s the  best  ski


season  in  30  years, and I note with  some  irony  that  having


decided  NOT  to do maple syruping this year, this is  the  first


year  I can remember when we’ve had a good long stretch  of  days


above 40, nights below freezing and snow on the ground. I console


myself that it should make the syrup more affordable when we  buy






Back  to  the  tale of Aelfwine. While  I  was  digging  out


Saturday  morning,  he  was  getting  his  first  run  of  tests.


Apparently  since Leukemia is a cancer of the blood, one  doesn’t


have  to biopsy as much, since all you need is to look  at  blood


which  is  fairly easy to get at, and you can  see  the  abnormal


cells.  His  initial  “crisis” problem was that  because  of  the


Leukemia  he  had become anemic. His Red Blood  Count,  which  is


supposed to be around 40, was down to 15. So the first thing they


did- “right away” (the wee hours of Saturday), was started giving


him  whole  blood.  After  four units of blood,  he’s  up  to  an


hematocrit  of  26, and they started giving  him  platelets  (the


component of blood that helps with clotting). That seems to  have


started  a  hive  reaction, but not so  severe  that  they  can’t


control  it  with Benedryl. So his blood is looking  better  now-


except  for  the  white cells, which is the  one’s  the  Leukemia


attacks  directly. Anyway, they did get around to taking  a  bone


marrow sample over the weekend- from his hip, and yes, it hurts.




Everyone there is terribly impressed with how healthy he is-


for a guy with leukemia. No smoking, no drinking, healthy  eating


and  exercise, he’s young (the average age is 65). Not only  that


they  checked  and  his particular cancer cells  have  a  certain


protein that allows them to use a special drug that targets  that


protein  and presumably makes the chemotherapy more effective  at


attacking cancer cells rather than the rest of his body.


I’d  always wondered why people’s hair falls out  when  they


have  chemotherapy.  Apparently the drugs they use  target  cells


that reproduce a lot- like cancer cells. But certain other  cells


in  your  body  do  that too- like  your  hair  follicles  (also,


presumably,  your  nail beds), and some in your  digestive  tract


especially  those in your mouth. They say he can have a wig-  and


guys  with  beards  even  can get  false  beards-  they  seem  to


understand  the importance of self image. But they also say  that


face  and body hair is more likely to thin than fall out,  so  he


may not need it. That’s good, because while a bald head would  be


weird,  the kids all agree that they aren’t really ready  to  see


his chin.




Anyway,  according to Aelfwine’s doctors while the bad  news


is  that Leukemia is fast moving, but the good news is that  it’s


curable.  They  actually use the word cure. A lot. They  say  can


completely get it, and he will be totally recovered. (Of  course,


they could be lying to us- they seem to have a very flexible idea


of what constitutes what people should be told. As it changes  so


often I am really getting the impression that they are masters of


telling  you  whatever  they  have  learned  will  get  the  most


cooperation  out  of patients and their families  for  what  they


think  is  best  for them. I don’t doubt their  motives  at  all,


except  that  I  don’t think they  respect  our  intelligence  or


ability  to cope much, and so are manipulative out of  habit  and


training.  This, of course, leaves the burden of research on  us.


They  did pass us a pile of little pamphlets-  there’s  something


less  than  satisfying  about What  everyone  should  know  about


Leukemia written in 1980. On to the internet! (where, of  course,


one  can believe about 10% at best and the game is  figuring  out


what  10%). The figures I’ve seen so far say that at  this  point


they’ve  got an 80% total remission rate. Of course the same  set


of figures also claim a 40% five year survival rate. Now what  is


THAT  difference  all about? They eliminated the cancer  but  the


other  half  of  those who died died of  complications  from  the


chemo?  Several  people have sent us directions to web  sites  to


check out. Maybe I’ll get to them tuesday, (today) as there’s  an


ice storm and I assured Aelfwine that I wouldn’t drive in it.




His  diagnosis is Acute Miloblastic Leukemia- if I wrote  it


down  correctly.  (I  take a lot of notes,  but  of  course,  the


doctors  don’t check them.) That’s not in the list of options  in


the pamphlets, but could be a mistranscription, or it could be  a


specific  sub variety or an alternate name that this doctor  uses


for one of the usual varieties. I’ll let you know.




The  drugs  they’ll  be using  are  Ara-C  (Cytarabine)  and


Cerubidine  (Daunorubicin) which they gave us  fliers  describing


(so  I’m confident on my spelling of those). Those are the  basic


anti  leukemia  drugs which they have confidence in  after  using


them  for  30 years. The fact that they have so  much  experience


with  this  makes the engineer in AElfwine very  comfortable.  It


appeals  to  the engineer in me too, but my engineer  is  warring


with  my alternative medicine practitioner- so I’m not  quite  as


sanguine  about  it as Aelfwine is. Of course confidence  is  far


more  important  in this case than mine. He’ll  also  be  getting


Cephtrasadine  which  is for when he gets  neutropinic,  (rat!  I


forgot  to  put down the definition of that! Only that  it  means


that some reading has gone under 500. update, next week) and  the


new  drug Myletar, (which is the one they are so  excited  about)


which is the one that targets the specific protein CD33 which  he


has on the surface of his Leukemia cells.




His  doctors  are Dr. Daniel DeAngelo, who’s  his  attending


physician, and Dr. John Hamarch, who’s his fellow. The  attending


is  the experienced physician who oversees the residents  who  do


the  bulk of the work at the hospital. The fellow is  the  doctor


who will follow his progress during his whole stay, no matter how


long  it  is.  Apparently every month  the  attending  physicians


rotate, and it just happened that Dr. DeAngelo is THE  specialist


in  Leukemia- out of all the oncologist at the Farber. So  for  a


month,  he’s  got  THE  specialist  associated  with  THE  cancer


hospital  in the world. As they told me, people are shipped  here


for treatment from all over the country and even the world.  Arab


sheiks  come to this ward with their cooks and  their  bodyguards


that  stand outside their doors. Of course, I suppose that  means


that  in  other  months  his  attending  physician  could  be  an


obstetrician.  But that’s weeks away. (which is pretty  much  how


I’m dealing with everything right now- one day at a time.)




We  are told that the room where he is will be  his  “world”


for the next couple of months. Of course, when we first got there


they said 2-3 weeks, and that grew to 4-6 weeks, and finally this


morning,  the social worker told us that we might as  well  apply


for  Social  Security Disability even though it doesn’t  kick  in


until  you’ve  been  on disability for five  months,  because  on


average he can expect to not get back to work for eight! (Boy, is


Granite  going to be in trouble! Of course, the doctor said  that


he’d be able to telecommute for part of that time- we’ll have  to


see  how  that effects the Disability- obviously  we  don’t  know


enough about that yet.) Still, they figure he’ll be in there  for


a  couple of months, so he can make himself  “comfortable”:  tape


cards to the walls, stuff like that. He CAN’T have any flowers or


live plants though- (I suppose he could have them if they  boiled


them  first) any that are sent to him will simply be left in  the


lobby  for  the  staff to enjoy. (I figured that  at  least  they


should send them home with me, but apparently that’s not the  way


they do things.) So we are telling anyone who wants to give him a


gift  to think about donating blood in his name. If you  want  to


write him, his address is:


6C Room 60


Brigham and Women’s Hospital


75 Francis St.


Boston, MA 02115




and his phone # is 617-732-4169 it goes right to him. Call  here


if you just want a progress report- and this letter will still be


written  every  Monday as usual. I can add people to  the  e-mail


list for it, if you know anyone else who’ll want weekly updates.


I’ll be on the road a lot, so remember, my cell phone is 603-554-


  1. Try  not  to call him between 7 a.m. and 10 p.m. (unless  he


asks    you    to).    He’s   setting   up    e-mail    now    at


aelfwined@hotmail.com, so that should start working sometime next


week. (so far he hasn’t “wined”)




Now that he’s on Chemo, he’ll be tired a lot, so if you  are


going  to visit, even if you arrange it a week in  advance,  it’s


probably  a good idea to call just before you leave to make  sure


he’s going to be up for a visit. Also, no visitors who have  been


exposed  to colds, flus or anything contagious. Wash  your  hands


before you hug him, and that sort of thing. Remember, until  he’s


rebuilt  his  health, he’s got no immune system. Also,  turn  off


your cell phones when you come into the hospital because it could


effect some of their medical equipment.


(As  a  personal note, let me add that he  really  does  have


enough stuffed bunnies.)




Charlotte  (Tracy  and Jan’s daughter) sent  him  his  first


paper  crane  (it’s a japanese tradition to send  a  person  with


leukemia 1000 origami cranes) and I hope he’ll that many. I think


our  SCA  friends  are going to send him  pictures  of  the  SCA.


Kerensa has offered to help butcher the extra goats, and Ken  and


Minna are going to take care of the rabbits that I’d offered  her


for  her  tanning  workshop, butchering  them  and  wrapping  and


freezing  them for us. Vicki contacted the Heifer Project to  see


if  they can place any of our extra does. (It would really  be  a


pity to eat a potentially good milker.) We’ve hit Tamooj up  with


trying  to  round up folks to put up our house  at  Pennsic  this


year.  (Of course, there’s no guarantee we’ll be able to go,  but


we  might as well prepare for the difficulties we’ll have  if  we


do.)  Olaf  and Val and several others have  volunteered  to  get


tested  for bone marrow matching if it should come  up.  Everyone


has been very supportive.




Actually,  it  probably won’t come up. First, if  the  chemo


works  as  well  as  they hope,  the  remaining  bone  marrow  in


Aelfwine’s bones should regenerate, with no transplant needed. If


that  doesn’t work, then they look to his siblings- which,  since


he  has three, they figure should generate a match.  Outside  the


sibling group the chances of a match are one in ten thousand, but


since that’s not even going to be an issue until the first  round


of chemo is checked to see if it works. Of course, if you want to


join the general donor pool and are willing to save the life of a


stranger, not just AElfwine, please do.


He’s  been really bummed to find that he will never be  able


to give blood again, he’s donated at least 6 gallons already, and


hoped to be able to donate that much again before he died, so  if


anyone wants to give him a present he REALLY would like, donating


blood  would be good. If we could show him that the  blood  banks


are  up  6 gallons because of him, he’d feel a bit  better  about


what he won’t be able to give personally anymore.




The chemical “cocktail” goes into his body through a Hickman


Catheter-  which is installed “permanently” (for the duration  of


the  therapy)  in one of his major blood vessels  in  his  chest.


Since the drugs are so corrosive, they have to put it into a  big


one,  rather  than the smaller vessels they can use  for  saline,


glucose, etc. He started running a temperature over the  weekend,


so they started the first treatment through a vessel in his neck-


apparently they wanted to get started, but don’t want to risk  an


infection in the Hickman.


Leukemia  patients  in this acute stage  basically  have  NO


functional  immune  system,  so  the main reason  he  has  to  be


hospitalized is to run interference (through sanitation as far as


possible,  and  antibiotics  when that  fails)  against  all  the


possible infectious agents to which he could be exposed.




The reason he’s in Brigham and Woman’s is because they  have


some  sort  of partnership with the Dana  Farber  Cancer  Center.


Despite  having  to deal with ANY hospital bringing  my  “control


issues”  into sharp focus, the Farber is really very advanced  in


dealing with patients supportivly. For example, they have a whole


complementary   therapy   unit-  with  people   who   do   Reiki,


hypnotherapy,   guided  imagery,  a  lot  of  the   “alternative”


therapies- but practiced in conjunction with the latest  standard


medical procedures.


The doctors are cool with his taking Essiac during the chemo


to  help  with the side effects (I did NOT mention  the  possible


cancer  fighting  properties), and they had  had  other  patients


who’d  used  it. I did point out that I was making it  in  strict


compliance  with sterile procedures- after all, it was  developed


for  cancer  patients- with compromised immune systems.  So  he’s


started  taking  it three times a day. Until he’s done  with  the


chemo  though,  he can’t take vitamin C or  other  anti-oxidants,


they’ve  learned  that  those interfere  with  the  chemotherapy,


although they are good for rebuilding the health afterward.  (can


you  say even more complicated, boys and girls?). That’s why  I’m


taking notes.




I  think that covers what’s happened the first  three  days.


(It’s been a long week!) E-mail or call if you have questions and


I’ll try to answer them.




Other  than  that, because of the snowstorms,  it’s  been  a


quiet week. As usual, Star really resents missing days of school,


and  grumps  about it a lot. But he’s shoveled without  too  much


complaint, and has been wonderful about helping with the  chores.


He hasn’t been down to see his father yet, but is looking forward


to the video phones that the social worker says the Farber has to


loan to patients with children while they are in the hospital. So


is  his  father  actually. Techno-junkies. He  doesn’t  seem  too


disturbed  about  his  father’s  illness, but  he  does  tend  to


internalize things that bother him, so we will have to watch  and


be  open  to anything he wants to let out about  it.  Frankly,  I


wouldn’t want him to worry too much, as the prognosis is good.




Kat  is more open about being upset- she went down  with  me


Saturday  and drew him some pictures on his white boards. I  sent


notes to school with the kids to let their teachers know what had


happened  and in the first class, someone mentioned  what  they’d


done  over the weekend with their father, and she dissolved  into


tears.  At that point she just pulled out the note, and  all  was


explained. The guidance councilor got her some origami paper, and


after  she folded a few cranes she went back to class, feeling  a


bit better. Frankly, that’s about what I’d expect- fine, most  of


the  time,  with  occasional tear storms that catch  you  at  odd


moments when you least expect it.


Other  than that, her dance performance was canceled due  to


the  snow  storms  eliminating  their  rehearsals.  It  will   be


rescheduled.  On the other hand, while we were shoveling she  was


on top of the pile by the driveway because it had gotten too high


for us to throw snow past the top- so she was stationed up  there


pushing the top off the back. Since then, she has tunneled a cave


into the side and through the top of the big berm and is  working


on  an  offshoot  for Star. I remember when my  brother  and  his


friends  used  to make those snow caves. Mothers  always  worried


about them collapsing. Now that I’m a mother, I worry. Part of me


is  like the kid, excited about the cool thing she’s making,  and


part of me is watching the weather and wondering how long  before


it  melts  to structural instability. So she doesn’t work  on  it


when I’m not here, and answers IMMEDIATELY if I call. And it’s  a


cool project.




Dan  has started working for a temp agency, and is  bringing


Brad  up  here  on Saint Patricks Day to prove to  him  that  her


mother  really  IS crazy and DOES put green foodcoloring  in  the


corned beef on Saint Patricks Day. Well, that’s the way MY mother


fixed it! It’s only once a year. I think she’s visiting  Aelfwine


on Tuesday.




People  ask me how I’m doing- and I fear my answer  is  much


like  the  ones we get from the hospital- it  depends  on  what’s


going on from minute to minute. Sometimes I’m just fine- at other


times I am a basket case. You should have seen me (or not!)  when


first  got  to  the hospital  Saturday.  They  give  excellent


directions  on  their  voice-mail (if  too  rapidly).  What  they


neglect  to mention is that while there is plenty of  parking  in


the  hospital area- there are only two parking garages that  will


take vans of 6’6″, (none over that) and those only have about  12


spots  total!  After about an hour of driving around  and  around


checking  out  big blue P sign after P sign with no luck,  I  was


crying  hysterically. Finally I risked one of the 6’6″ places  (I


thought  we were 6’8″) and the nice attendant allowed me to  park


in one of the empty “Reserved for Van Pools, others will be towed


at  owners expense” spots. I felt like it was some sort of  sick,


twisted  joke to play on people who already have enough to  worry


about.  (And it turned out I didn’t have my Rescue Remedy  in  my


purse  either!)  When I calmed down, I decided to try to  rent  a


smaller car for the month. Willow and I gave using the T a  shot,


but  it  took an hour and a half ride and made it into a  3  hour


ride.  Oh,  well. Still, her suggestion to take Rte.  2  is  more


efficient  than  coming down 93, as I’d been doing.  At  first  I


thought it was going to be two hours each way.


Dear  Steve tried to visit Aelfwine, and even got as far  as


the  lobby  before  the  old memories  of  when  Lisa  was  there


overwhelmed him. I think that he’s going to be my biggest support


during this time, as I know whatever I’m going through, he’s been


through the same and worse. I really miss both Lisa and Mom right


now,  and of course, remembering people we’ve lost to  cancer  is




Did I mention that last week I picked up a set of tuned wind


chimes?  As  it’s still very snowy, they’ve been hanging  in  the


kitchen, and ring every time someone brushes past them. I find it


very soothing.




Intellectually,  I  still  feel  that  there  is   something


seriously  wrong that no therapy is considered acceptable  if  it


hasn’t  been  tested, but the organizations  who  test  protocols


won’t  bother testing any therapy unless they can make  back  the


money  that  the  testing  will  cost  by  selling  the   product


afterwards.  Because of this, no safe, easily available therapies


are being tested, at least not in America. Still, we, personally,


aren’t  having an intellectual exercise on the greater  good,  we


are   dealing  with  a  serious  problem  that  must  be   solved


immediately.  I  have  to  admit  that  due  to  this   political


situation,  while I would really prefer a less dangerous therapy,


at this point there isn’t one available (that I know of, and they


certainly  aren’t  suggesting any). So we use the tools  we  have


available when the job needs doing, even if we suspect that there


are  better ones elsewhere. (And I’m sure there are  those  who’d


argue with me on that, but for now, don’t bother- while I usually


enjoy  a  debate, right now I don’t have the time,  and  besides,


it’s not theoretical now.) I am very well pleased with the  human


aspect  of  the hospital, it appears to be much better  than  the


(admittedly  few) other hospitals I’ve seen. I  am  exceptionally


happy  that we just lucked into about the best care available  in


the  modern  world being nearby- right time,  right  place,  even


right   attending.  I  was  thrilled  that  they  have  a   whole


complementary medicine team available- we’ll be able to have a RN


who practices Reiki come work on him. And I am SO glad the social


worker  is  helping  us  with the  parking  situation.  I’m  also


relieved  that, so far at least, it looks like our finances  will


get  by.  And I am so touched at the outpouring of  support  that


we’ve been getting in the last few days.  But not surprised.




Other than that, I am finding solace, as I expect many other


people  going  through  this type of thing do,  in  doing  simple


household  chores  between  trips to the hospital.  I  get  great


soothing from washing a load of dishes, sweeping or cooking.  The


twice  daily barn chores are especially therapeutic- milking  the


goats, getting the rabbits ready for kindling, feeding the geese,


looking at the peacocks… I leave the barn feeling renewed  each


time. As I’ve always maintained- people shouldn’t have this  kind


of  life if it’s not what they want. I’m not sure I’ll  get  much


soothing from the project of getting the place clean enough for a


weakened immune system during the next month. But Willow’s friend


Jenny is coming for a couple weeks to help us- which is going  to


be  great.  Really,  I am more worried about  Willow  than  about


Aelfwine  and myself. She’s trying to keep the house running  and


the  kids  on schedule while I’m running  around  doing  hospital


visits,  calling  Social Security, etc. etc. And let’s  face  it,


besides  having  CFIDS,  she’s doing the  PCA  job,  the  weekend


workshops, and working on her art/writing career. I cannot  think


of a way to show her how much we appreciate her, and how much she


does for us.




I realize that this has been pretty much a one topic letter,


but  I  figure that it’s pretty much what  people  are  wondering


about,  and  I’ve tried to answer all the questions  most  people


have been asking. Actually, having this letter in place makes  it


much  more  efficient  for me to get the  news  out  to  everyone


without  having  to  answer  each  question  multiple  times   to


different  friends,  so if you know anyone who’s  going  to  want


weekly  updates  on Aelfwine, let them know and if they  send  me


their e-mail address, I’ll add them to the list.




Honour  says Alex is doing very well in school lately.  Wolf


had pneumonia last week. Megan finished (preparing) her book, and


is  now working on the printing part of it. I spent most of  last


week working on a new booklet for introducing new members to  the


SCA  as the barony doesn’t have one- I was going to offer  it  at


the  Barony Meeting on Saturday, but I’ve been diverted. I  guess


that  won’t  get  printed up until  this  current  situation  has


passed.  (I hesitate to call anything that is going to  last  for


between 2-8 months a “crisis”.)




Please  be assured that we intend to take full advantage  of


all  the  wonderful offers of help that are being  tendered.  And


especially,  keep  praying.  I, truthfully, have  more  faith  in


prayer  than in chemicals. Thank you.




“Health nuts are going to feel stupid someday, lying in hospitals dying of

nothing.”  – Redd Foxx






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