* 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






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






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




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




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






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






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







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






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