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
that.
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
down.
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…
Tchipakkan
“Faith is the innate knowledge of the fundamental rightness of all things,
whether positive or negative.” – Process Precept
