*Week Five Welcome Home April 9, 2001



Welcome Home Aelfwine!                              April 9, 2001


Biggest  news  first- Aelfwine came home from  the  hospital


yesterday-  that’s  March 9th through April 8th (and  after  we’d


gotten used to the idea of a two month stay!)


Now back to chronological order.




Last monday was the first Daylight Savings Time morning,  so


getting  up  was  a bit hard for a few days.  Luckily  it  wasn’t


totally  dark  at 5:45, so we could still drag ourselves  out  of


bed-  but it wasn’t so easy as it had been in the light.  And  we


kept having dinner late because we didn’t have the “getting dark”


cues to get started.


The snow is melting, and the pump in the basement is humming


away merrily. I was about to buy a new one, but Wolf took a  look


at  it and noticed that the outlet into which it was plugged  had


yet  to  be hooked up to the house wires- hence  the  non-working


pump.  One extension cord later, it was doing fine. I was  a  bit


embarrassed, but happy to have saved that money.


You  may  have noticed last week that I said “I  wish”  that


Willow had a car to pick up Jenny on Tuesday. Well, I got what  I


wished  for.  Willow found an SUV in her price range at  the  lot


that  Wolf  had recommended as an honest dealership.  It’s  a  88


Bronco,  an  Eddie Bauer edition, which means  fancier  than  she


wanted,  but  the only thing that really annoys her about  it  is


power windows, one of which malfunctions and we talked them  down


because  of it. The other one she test drove had the engine  heat


up  to fast for her liking. I was impressed that she  thought  to


look at things like that. Then we got insurance, went to the town


office to get it registered, that night.  So Tuesday she went  up


to pick up Jenny at the Manchester Airport, and I got to go  down


to Boston to see Aelfwine. (She went to the DMV the next day, and


is waiting for the plates: W1LLOW to get here.)


Monday I also went to the doctors to see if he could tell me


why  my  foot still hurt after six weeks. It turns out  I  didn’t


pull  a  muscle, I broke one of the bones in the foot,  and  have


been walking on it since February! It’s healing- of course, a lot


more  slowly  than if I’d stayed off of it, but I  wouldn’t  have


stayed  off  of it under these circumstances anyway, so  I  guess


there  wasn’t much difference. On the other hand,  both  Aelfwine


and I have had a “little nudge” to get to the doctor sooner  when


we  know something is wrong. I also talked to Dr. Quirbach  about


Aelfwine, and he asked to find out about what had happened to him


down  there (having sent him down, and since he’s the  one  who’s


getting him when he’s back up here). I was very pleased that both


he and Dr. DeAngelo are both eager to work together.




Tuesday  the  nurses started a new therapy- getting  him  to


walk  to rebuild his strength. They said he’d better get able  to


because he’d be going home in a week. When the doctor came by,  I


asked  him and he said that because AElfwine’s blood counts  were


coming up so well, that he thought he’d be able to go home by the


weekend,  or  Monday at the latest. I’d been planning  on  having


people  in  to  help  clean in a couple  of  weeks-  time  for  a


controlled “panic”! (Also, since ordinarily I write the letter on


Mondays, and Monday pick-up would eat the day, I started  writing


this  weeks letter in bits  between spates of cleaning. So if  it


seems disjointed this week, that’s why.)




I was pretty floored- ever since we’ve been in they’ve  been


adding  length  to  the estimates of how long  he’d  stay  in:2-3


weeks, 3-4 weeks, 5-6 weeks, two months… Suddenly they  shorten


the estimate? Oddly, it’s a bit disorienting- we’d gotten used to


the routine of having him down there, my spending every other day


there,  the kids dealing without us, doing two days normal  stuff


every  other  day, plus calling everyone from the IRS  to  Social


Security.  I  suppose within a week we’ll be used to  having  him


home again, and when he goes back to work, we’ll have to adapt to






Basically, they don’t want him in the hospital,  potentially


exposed  to major microbes if he doesn’t need  constant  therapy.


This  means-  get him off oxygen, off IV antibiotics,  off  those


things  that  need hospitalization, and if he has  a  functioning


immune   system-  (defined  as  no  fever  for  a   day   without


prophylactic antibiotics) he goes home. At home he’s supposed  to


finish  rebuilding his blood counts, energy levels and such,  and


as  soon  as  he’s  feeling good-  the  beginning  of  May,  they


estimate, he goes back in for five days of chemo “consolidation”.


Then  back home, where he rebuilds again. During this  period  we


have  to  go back down twice a week to get blood  products-  this


implies  to  me  that the chemo will once  again  kill  his  bone


marrow,  send  his  blood counts plunging, and  then  he  has  to


recover  again.  And they do this three times. I  certainly  HOPE


there  is  clinical proof that this is a good  idea,  because  it


sounds  counter-intuitive to me! Still, he’s recovered  from  the


initial Chemotherapy, which is stronger, and he was in much worse


shape going in, so maybe it won’t be so bad.




The main effect of this news is that Willow and I (and Jenny


and  the kids) have been pushing ourselves extra hard to get  the


place  clean. Despite the very short notice (and we got a lot  of


apologies from people who would have come except for  unbreakable


plans) we did get descended upon by near hordes of volunteers  to


help  clean. Mark and Anjoli and their daughter Barbara came  all


the way down, and so did Lugh and Kirstin and Justin and a  bunch


of  their kids (I’m afraid I didn’t keep track of how many.  They


also brought Mari for a visit, and she seems to be thriving as  a


member  of  their  family. No discernible limp  anymore,  but  no


discernible  road sense either-she tried to run into  the  street


again.  I  guess it was a good thing we passed her on  to  them.)


Bella and Raven and Jessica came up from Massachusetts, and Bella


brought her chimney brushes and cleaned the chimneys. Jeanne  and


Kia  and Christopher also came up from Southern Mass. And so  did


Dan and Brad. I didn’t get much cleaning done personally- I spent


the  whole  day running from crew to crew to crew  bringing  them


whatever  they needed, mops or buckets or vacuum or  whatever  to


facilitate  their cleaning, and it was a full time job.  I  never


realized quite how much work it was. Together we managed to scrub


the  kitchen ceiling, and walls and get them painted, scrub  down


both  the  bathrooms, our bedroom and the connecting  halls,  and


vacuum  the  library. That’s enough to hold him for a  while  and


Willow  and Jenny and I can expand his range from  there.  During


the  week  Willow even cleared and painted the  hall  closet.  (I


figured  as long as we had to get the kitchen walls  and  ceiling


cleared  so we could scrub them- which I felt we should do,  that


we  might as well put a coat of paint on it as soon as it  dried,


because when was I going to ever get all the stuff unscrewed from


the walls and ceiling again? I had no idea just how many  shelves


and  brackets and various “things” (from the clock to the  cheese


press) we have attached to the kitchen walls!




Up  until  now we have functioned under the theory  that  as


this  was going to be a long haul, and we’d need to preserve  our


strength  for  the full distance. The last week we  haven’t  been


able to do that, and I have to admit that we are exhausted.  I’ve


been on my feet so much that they are both painful, and I have to


wonder if I should get that checked out- since the last fiasco.




But   that  was  the  weekend,  and  I  was  trying  to   be


chronological- Monday the Brigham and Women’s Audiologist finally


came and checked his ears and basically said, yes, he’s deaf, but


there’s  some fluid behind the ear drums so it will probably  get


better,  so  we  can’t do anything  until  whatever  hearing  has


returned  has  done so, and so that’s that. He still  can’t  hear


worth  a  darn- even when the amplifier he’s wearing  hasn’t  run


it’s  batteries down, but for a while there’s nothing we  can  do


about THAT.


Tuesday,  Wolf’s  tom turkey died. I am  sure  that  someone


somewhere keeps mature turkeys, otherwise where would baby turkey


poults come from? But no one I know has made it work. Wolf’s pair


were supposed to be half wild turkeys, so he had hoped they’d  be


able to reproduce. Oh, well. Life goes on- just not for Tom.




Another   much  more  piece  of  disturbing  news  came   on


Wednesday- Willow’s friend Amanda has been diagnosed with  Breast


Cancer.  Sadly,  while  perhaps  a  bit  more  knowledgeable  and


experienced than she, we haven’t as much time available as I wish


we  had to help her get through this. She certainly doesn’t  have


the support system and perspective that helped Aelfwine so  much,


and  on  top of it, at 19 she’s being talked over/across  by  the


doctors  and  her  parents- increasing her feelings  of  lack  of


control.  I  am telling you, there is FAR too much  cancer  going


around  today-  it’s  not perception, it’s  really  increased.  I


rather suspect that I may become more militant about such  things


as  environmental damage after this is over and I have the  time.


If I do, don’t say I didn’t warn you.


One  of the small changes in our lives is that  rather  than


the  usual  reading material in the  (insert  favorite  euphemism


here)  I  have  been reading various pamphlets on  all  sorts  of


aspects of Leukemia brought to us by the hospital staff. Some  of


them  cover coping mechanisms, and I am relieved (and I’ll  admit


it,  a  bit  smug) that we have in place what  looks  like  their


perfect image of a supportive group of family and friends.  (This


is  where all of you get to congratulate yourselves.) Looks  like


it could have been a lot worse.




It  occurred to me, though, that in an odd way,  our  having


had to deal with two of the earlier wretched events in our lives-


the  house fire and Willow’s CFIDS, also has given us an  immense


advantage  over people who had not had such experiences.  One  of


the major effects that the fire had was to force us to deal  with


sudden  major  and  unintentional life change. By  the  time  the


leukemia struck, we already had integrated the idea that with  no


warning,  without  even making any stupid  mistakes,  things  can


happen  that totally change your life. One of the most  permanent


effects  of the fire was the constant realization at the back  of


our  minds  that we COULD have another- any  time.  Sure,  taking


proper  precautions is a good idea. But we did before. It  wasn’t


the  woodstove  (which  so  many  people  seem  to  think  is  so


dangerous) it was the electric dryer. And we do, and did,  better


maintenance than most on cleaning the normal accumulation of lint


away  from it. OK, I no longer use fabric softener sheets,  since


they  are  associated with greater risk. But  still,  even  lying


awake  at  night listening to the wind in the trees  or  a  plane


going  overhead and reminding myself that it just SOUNDS  like  a


house  fire, it isn’t one this time, I have to remember  that  it


could be. Anytime. When you least expect it. But you live anyway.


You go on, you jump through the bureaucrats hoops, you mourn  the


things you’ve lost and express gratitude to the powers that saved


the things that you didn’t, and go on.


And  with Willow’s illness, we’ve learned- if  second  hand,


how  to live with altered expectations. Willow had been  thinking


about  theatre, or maybe going to Rhode Island School of  Design.


But  since  she can’t predict from one day to the next  what  her


energy level will be, she’s developing her career in art in a way


where she doesn’t have to work on someone else’s schedule.  She’s


learned  to listen to her body and take it easy- even when  she’d


prefer to be working… or playing.


Also,   we’ve  integrated  a  whole  lot  of   complementary


medicine/health  practices  into our lives. The last  CFIDS  book


Willow read, her reaction was: “Hey, I already do all the  things


they  are  suggesting!”  It felt like it had  been  pointless  to


bother reading the book- until she realized that many people with


CFIDS  are  nearly incapacitated, and she can pass for  a  person


without  a debilitating disease most days. She has  achieved  the


almost  total return to a normal life that most people  who  read


the  book are looking for. I have been somewhat appalled  in  the


hospital  by  the  way that the staff appears  to  not  pay  much


attention to nutrition. Of course, I realize that most people who


are  dealing  with leukemia have enough to deal with  just  going


through  chemotherapy,  disruption of the  family,  etc.  without


having someone lecture them and try to make them eat differently.


One’s  relationship  with  food is  probably  the  most  personal


relationship  in one’s life- possibly even closer than that  with


family members. Even in sexual relations one doesn’t really enter


and  become  part of the other person- and food  does.  Making  a


change  in  food habits really does have to be in response  to  a


personal choice. That may be why the hospital folk don’t push it.


They  certainly have not in any way been disparaging of our  food


habits,  but  rather supportive- surprised even.  I’ve  seen  the


stuff  the  nurses eat, and heard them say to  bring  the  cancer


patient anything they are willing to eat. Aelfwine does  complain


that  even  things he does like don’t taste as good as  they  are


supposed  to because of the dead cells in his mouth  (poor  guy).


But  I  can’t  help but think that proper  nutrition  would  help


people recover better, and is part of the reason he’s  recovering


faster than most. (It’s official, one of his doctors said he is.)




Thursday   was  the  day  of  Aelfwine’s   Social   Security


Disability phone interview. I went down and basically did most of


it, because of his hearing problems and coughing. We are required


to  apply by the Disability Insurance he get’s through work,  and


if  they say we get it (after all, he’s been paying in all  these


years) the work insurance company pretty much gets all they  give


us  except the allowance for Star and Kat. Some of the  questions


seemed  pretty  odd- like have either of us ever worked  for  the


railroad? and some were off-putting, like have I (but they didn’t


ask  about  him)  ever  been convicted  of  a  felony?  One  more


complication, but I expect we will weather the chaos somehow.




The doctors have reassured me constantly not to worry  about


the house- even when I made the farm aspects very clear to  them.


For  a  normal person they say don’t change the  litter  box  and


birdcage,  for him they said- don’t muck out the stalls.  If  you


garden,  wear gloves and don’t do it barefoot. Since we’ve had  a


lot  of testing done I was able to check with the  allergist  and


find  out  what  molds were present (at least the  last  time  we


checked),  and  one  was very disturbing to one  of  the  nurses-


aspergillis, but the doctor said not to worry about it. My  guess


is  that that nurse had personally (and maybe  recently)  watched


someone  die horribly from complications arising from  that  mold


spore  lodging in their lungs. I know that that’s very hard on  a


doctor  or nurse. We’re going to re-do the mold plate  test,  and


see  if the situation has improved any with the air purifiers  we


got  because of the allergies, and may be helpful with  Aelfwine.


Cleaning  the  circulating  air,  and  wiping  down  surfaces  is


probably the best one can do anyway according to the doctors. Any


building  that  has  a wet basement,  a  leaky  roof  (basically,


anywhere  in New England) will have mold problems, and any  place


with animals (pets, mice, pigeons, or other wild birds as well as


farm  animals) is going to have this particular mold.  At  least,


this is what the doctor said.




Alva and Sue saw how tired I was getting and wanted to help,


so  the sweet things sent a professional cleaning  service  (with


our  permission,  mind) over to our house on Friday.  In  theory,


Willow and Jenny and I could just clear stuff ahead of them,  and


they  could  do the heavy scrubbing. No one can do  the  kind  of


cleaning  we  were hoping to do (scrub ALL the surfaces,  and  at


least wipe down everything on them) unless you clear the  clutter


away.  While I don’t do it often, I do know how to clean.  Sadly,


they came in, looked at the stuff, and baled. OK, I’ve always had


a high tolerance for clutter, much to my mother’s dismay, but she


did  teach  me housekeeping, and that which needs  to  be  clean,


(cooking and eating places) are always clean when they are  being


used.  But the projects, many of which were still left un  picked


up  since Aelfwine got sick in January, were piled high-  baskets


of  mending,  piles  of  paper (Kat has  been  ironing  open  the


envelopes  from all the cards Aelfwine has been getting,  cutting


them square, and folding those into paper cranes), eggs blown and


ready to dye, stacks of papers around the computers, toys and CDs


that  hadn’t been put away- the usual. Also, some people come  in


and  see the baskets and herbs and pans hanging from the  ceiling


and think: “How homey!”, others see them as clutter and think  it


makes  the house look dirty. I think such reactions are  born  in


rather  than taught. Anyway, three women came in,  looked  around


and  went  poker faced. We explained the idea to them  that  we’d


clear  in  front of them, and they started unfolding  and  taping


together  a dozen boxes they’d brought to put stuff into.  “We’re


going  to  need  more  boxes.”  “We’re  going  to  need  a   tape


dispenser.”  (They’d brought tape, but no dispenser.)  They  went


out  to the truck and called their supervisor. (Willow and  Jenny


and  I were stuffing things into boxes.) The supervisor  came  in


(where had he been for the first twenty minutes?) and asked where


to put the boxes. I told him that we had to put them in the  next


room,  then move them back when we switched to the next room.  He


asked about the hall- unfortunately, that’s full already  between


Wolfs stuff and what we’ve put out there this winter. He asked if


I’d  consider renting a temporary storage space. He went  out  to


their  trucks  and called their office. The four  of  them  drank


coffee  for about an hour. (Once as Jenny was carrying  some  SCA


stuff  out  to the hall she overheard them say “This place  is  a


disaster.” Obviously these were low-clutter types.) Or maybe they


are  just  used to working in fire and  flood  damaged  buildings


where  they  get to work alone and anything they can  salvage  is


gratefully  received,  and if they don’t salvage  something  they


aren’t  held  responsible,  the natural disaster  is.  After  the


coffee break, the supervisor came in and said “We can’t help you,


you  can  keep the boxes.” And they left. Ah,  well.  We  weren’t


impressed  with  them  anyway  since they  were  not  good  about


returning Sue’s calls on Thursday, and having said they’d be here


at  8:30  in Friday, they got here at about 9:15.  I  expect  the


value of the crew is dependent upon the individuals in it-  these


three  struck me as pretty useless. Maybe they save their  really


good  people for natural disasters and these women usually  clean


up for invalids who have no ability to generate mess.




But  I’m  getting ahead of myself again. The  Social  Worker


also  gave us a pair of videophones on Thursday (to use until  he


went  home  on Monday) as she’d been saying she was going  to  do


since he got there. I guess whoever had them before had just been


discharged.  Sadly,  when  we got ours home and set  it  up,  the


camera  on  Aelfwine’s phone didn’t work- and there was  a  cable


missing  on ours. We were able to steal a cable from one  of  our


normal phones and hook it up, but while Aelfwine could see us, we


couldn’t  see  him. It’s a very cool gadget- looks like  a  small


computer monitor- the screen is about five or six inches  across.


And  you  have to push a button on your phone  before  you  start


broadcasting- which deals with the problem of not wanting someone


to  see you on a “bad hair day”- or in the case of chemo maybe  a


“no  hair day”. I think Star would have liked to have used it  if


it  had  been available earlier- but it wasn’t.  One  can  hardly


complain as it was basically a toy and free.




I had been disturbed about not going down on Friday  because


the  doctor had said he was going to be giving Aelfwine the  run-


down on the upcoming out-patient schedule and I really wanted  to


be there for that. Both to keep track of scheduling, and to  find


out  whatever I could about risks and such for Aelfwine at  home.


So after the Servicemaster people bugged out, I went down to  the


hospital. (It took me a bit longer than usual because it was  the


opening day at Fenway, which I have to drive right by.) His Reikl


therapist,  Mary Jane Ott, came, and we Reiki’d him together.  At


five the chaplain came by. She said she usually leaves at 5,  but


she’d had a bad day and came to see us to cheer herself up.  Must


have  been  a wretched day because she stayed for  an  hour,  but


she’s  very  nice,  and seemed happy when she  left.  The  doctor


didn’t  actually show up until 6:30, and when he did,  he  didn’t


have  much new to say- basically at this point Aelfwine’s  immune


system  is pretty much recovered, but let them know if he gets  a


fever or any kind of infection. Unfortunately, by the time he got


to  us his nurse was already gone, so he couldn’t make the  first


out-patient  appointment, we are waiting to here from her  today.


He  wants it to be Friday or the next Monday. We are  hoping  for


Friday,  because  next  Monday is Patriot’s Day  and  the  Boston


Marathon goes right through Kenmore Square and basically shuts it




It  was  rather  cool  to  be  reminded  of  how  little  we


appreciate the things we have. Friday the nurse removed the ports


from  his neck, where they’ve been dangling for the  last  month.


Every  night at 4 a.m. someone would come in and take samples  of


his  blood  for  those  daily  numbers  we’ve  been  watching  so


carefully. They call themselves vampires since they are taking it


from  his neck. Aelfwine was being all excited about  not  having


any  tubes going into him. I wonder how long that will last.  One


usually  enjoys the first deep breath the morning after  one  has


had  a cold, but forgets how great it is to breathe  after  that.


Star asked me the other day (seeing me wince when I stepped on my


foot  wrong) if my rib was hurting, and I realized that I  hadn’t


had  any pangs from my rib in the last couple of months!  How  we


take health for granted!




So  we cleaned all day Saturday, may the gods bless all  our


wonderful friends! Willow took a couple runs to the dump and  out


to  get more supplies (and took rabbits to Agway), Dan  and  Brad


took a huge number of baskets of wet laundry to the Laundromat to


dry (the propane is still not installed). We hung all the feather


beds out, and washed all the bedding, so everything was ready for


Aelfwine  to  come  back. During the chaos I got a  call  from  a


medical supply company- the hospital had arranged to have  oxygen


delivered  here  in case he needed it.  It had been  supposed  to


rain,  which would have prevented both the chimney  cleaning  and


the airing of stuff, but the rain (and sleet) politely held  off.


(At least until everyone was on their way home.)


Sunday  I went down and sprung Aelfwine. I took a couple  of


large cloth carry bags and a hand cart, but it also took an extra


wide  wheelchair to get all the stuff down to the van. And  after


spending all of Saturday on my feet they both felt broken! “Ow- I


tell you what: Ow!” I hope I can keep off them more now that he’s


back!  On  the way back we stopped at Foodies for  one  of  their


white  pizzas (no tomato sauce, just garlic, onions and  cheese).


It was so good that Aelfwine cried. Me, I remembered meeting  him


there  for  lunch on January 17th and noticing a nasty  cough  he


hadn’t  had  at breakfast. The next day he was sick,  and  hadn’t


been  well since. I was pleased not to have  strong  subconscious


associations  with Foodies because of that. When we got back  the


fellow brought the oxygen machine over. He left several  portable


cans of O2, and a large (loud) machine that sucks in normal  room


air  and sends almost pure oxygen into the hose. AElfwine had  no


trouble  learning how to run the tanks because the  procedure  is


similar  to using scuba gear. So he was able to go to bed in  his


own  bed,  and, in theory, we will sail easily through  the  next


five  months of disability. (The kids had finished  the  kitchen,


scrubbing the floor, while I was doing the pick-up.)




Kat  has been having a rather unusual reaction to all  this-


over the last few weeks she has taken great leaps in her artistic


ability.  She’s  been  sketching-  and I  don’t  mean  her  usual


drawing,   she’s  been  doing  life  sketches  of   people,   and


teddybears,   and  all  sorts  of  things,  shading  and   really


progressing.  Besides that she’s also been playing the  harp  and


the piano.


Star  had not been acting like he has been effected  in  any


way-  although  he’s  been really great  with  helping  with  the


chores. But Sunday, when Aelfwine came home, he suddenly  started


crying as though his heart would break. We asked him why, but  he


said he didn’t know. I figure it was just the release of  tension


he  didn’t  know he’d been feeling. Actually, it  makes  me  feel


better about his not having acted like he noticed a change.




Willow  came up with something I thought was a  really  good


point.  (Maybe I’m sensitive to it because I have chosen to  live


my  life  without a standard paycheck type  income.  I  certainly


think  that what I do taking care of the family, and  even  doing


stuff  in  the  SCA  is far more  useful  for  society  than  any


contribution  I  was making in the few paying jobs I  ever  had.)


What  Willow  had noted was how often people who  have  paychecks


suggest that those of us who don’t don’t have “Real Lives”.  They


seem  to completely miss the fact that a paycheck style  life  is


about  as  unreal as you can get. In real life, whether  you  are


caring  for children or farm animals or doing any of  the  things


that people have done since the days of cave men, and still do in


cultures all over the world- there is no such thing as “taking  a


weekend off”, much less a day. (How often people suggest that  if


you  are  stressed you should just take time  off!)  Imagine  not


changing, much less, not feeding a baby for a day- or an  animal?


In  real life there is no such thing as “workman’s comp”. If  you


get hurt, the work still needs to get done, whether you are  hurt


or  sick or stressed or sick of it or not. You do it anyway,  and


anything you can’t get to, you have to get to as soon as you  are


back.  Let the people who think those of us who stay at home  are


sheltered try our “real lives” for a while. The only way they can


have their artificial lives is because there’s an entire  support


system maintaining it. Take a weekend off indeed!




One  last  bit  of news- Honour/Alizaunde  went  in  to  the


hospital  for a minor operation today (in all the  confusion  she


thought  she’d told me before so I didn’t find out  until  today)


but  she came through it fine. I wish I’d known in time  to  send


her a card in the hospital, but she says she’ll be home (actually


at  Kami’s)  tomorrow.  (I’d  tell you  what  it  was,  but  I’ve


forgotten  the name- but she did say that they’d gotten a  non-VA


doctor to do it, so she wasn’t worried.)




Until next week…




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

whether positive or negative.” – Process Precept






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