May 8, 2005 Mothers Day
I know it has been a while since you’ve received an update, and
I know that many of you wonder if the Chaffee’s have been
swallowed up by the great Puget Sound. But, we are here, we are
alive and I will try to review the past 60 days since Janice’s
bone marrow transplant.
The first three weeks after transplant went relatively well. In
fact,
for a short while the whole procedure seemed as sweet as a piece
of cake. Janice went to the clinic for daily blood labs, twice a
week to meet with her team, and throughout the week attended
meetings with nutritionists, pharmacists, and a myriad of others
responsible for keeping everything on track. By day 20 the signs
were encouraging: her counts were rising and all her levels were
where they needed to be. Blood labs were reduced to three times
a week; she seemed weak but moving forward.
On April 7th
I went home to Nashville for GMA Week and Janice’s mom flew in
to be her caregiver. Two days before I returned to Seattle she
had her first post-transplant bone aspiration. This is the test
that would tell us whether the donor’s cells were grafting into
her system and taking over her cells. The day I flew back I got
the call saying Janice’s bone marrow is 98% donor with no
residual signs of cancer. Bottom line: Her situation was as good
as it can get. We were thrilled with that news but “on the other
hand” had to face the fact that she had been diagnosed with a
bit of Graft vs. Host Disease (GVHD) in her stomach.
GVHD is the ‘sometimes light, sometimes dangerous’ turmoil
caused by the donors “invasion” into her body. Beyond it being a
struggle between her original cells and those of the donor, I
don’t pretend to understand it. Its tendency is to show up in
the skin, stomach, or kidneys (I think). The stomach, where hers
landed, is one of the least threatening places to have it, and
it appears that her case was mild, but the treatment, isn’t. It
required that heavy doses of steroids (Prednisone) and two other
drugs be added to her regiment of 35+ pills a day. The steroids
are the demon in all of this. Janice requires them to get over
GVHD but the Prednisone brings vicious side effects (besides
swollen ankles, they make her listless, brain-cloudy, and weak).
I returned to Seattle Friday night and was hit hard by Janice
slipping further and further into listlessness. The sharp focus
of her beautiful dark eyes softened and dulled. Her quick and
sassy responses had vanished. Conversation ended. It was like
her strength had been twisted into a Mobius strip. What came
around was connected to what had been but was no longer the
same. Everything was affected. Does that make sense? It didn’t
to us, but day by day we watched it continue to happen. Not even
the arrival of our boys from Boston could kick away the power
the steroids had over Janice’s mind and body.
Sunday night I drove to the airport, picked up our sons, and
tried to prepare them for Janice’s situation. We would have only
three days together and they would be good but hard days. I knew
what they needed; they needed reassurance by seeing their mom’s
energy and by engaging her in the feisty conversation they
expected from her. I knew they wouldn’t get what they hoped for,
what we all need during this difficult process; to feel safe, to
feel free of worry. I knew as I drove toward the apartment that
when they saw her, their hearts would hurt for her and for
themselves. As so it was. Still, it was unbelievably great for
us to see them. They have grown and matured since our
Christmas visit with them in Boston. Over the next three days,
they went to the clinic with us and twice took her by themselves
so I could work.
Tuesday our dear friends Dave and Barb Pine brought their boat
(43’ enclosed cabin, etc.) through the locks from Puget Sound to
a dock not much more than a stone’s throw from our apartment.
We sailed around Union Lake, through the cut into Lake
Washington, cruised down the eastside shoreline, stopped for a
coffee at Bill Gates house (well, we saw it), circled around and
headed back to our neighborhood. All in all, the day was
beautiful, the fellowship divine, and the diversion much needed
and appreciated.
Shall I mention it? Thanks to the new meds, Janice slept through
the beautiful cruise like a baby. Here’s the reason why. Tuesday
morning, Elliott called from the clinic to tell me they found
traces of a virus in Janice’s system; a form of the herpes virus
that 60% of population has but which lies dormat in them. It
has, lucky us, a tendency to flare up in immune comprised
people. The remedy is yet another IV treatment which they
decided to start at the clinic, right then and there. Thanks to
its dulling powers, she climbed aboard the boat, curled up on a
sofa and slept the entire cruise under the magic of sunshine and
a gently rocking swell. The virus was forgotten for a few
glorious hours but, naturally, accompanied us home requiring
that twice a day for a week I hitch her up to the pump and IV.
After the first week the virus seemed under control enough for
the IV to be reduced to once a day. I have never thought of my
beautiful wife as a “bag lady” but right now it’s a bag of virus
meds infused here, a bag of antibiotics there, then a big bag of
saline for hydration…I’m sure you get the picture.
Wednesday night the boys took a red-eye back to Boston so they
could work Thursday. For the first time in over two weeks
Janice and I were alone in the apartment. Between Wednesday and
the weekend (April 23rd)
I watched a gradual but steady decline in Janice’s physical
condition. She had less energy, less body strength, she dropped
over 5lbs from her already very slim body. More and more she
sat, staring and saying little more than a word or two in
response to my questions. For the first time since we arrived in
Seattle she wasn’t interested in going to church on Sunday. On
Monday in clinic her medical team was very disturbed by the lack
of improvement. This situation was monitored over the next week
but did not change. She was unable to go to the clinic by
herself, she was unable to walk more then a few steps without
assistance, she was interested only in sleeping. The next
Thursday, Jackie, the Red Team Nurse Practitioner called with
some more exciting news (yes, when it rains it does in fact
pour), the steroids she was on could cause high blood sugar.
Nurse Jim had two new jobs to learn: How monitor blood sugar and
how to give an insulin shoot if the need arose.
When I went with Janice to clinic on Friday, I must admit, I was
at the end of my rope…Jackie started to explain everything
involved in checking blood sugar and giving insulin and as I sat
there and Jackie talked, for the first time since Janice had
been diagnosed ,I truly didn’t know how much more I could take.
I heard Jackie’s voice in the background but, honestly, the
moment turned into something like an out of body experience, as
if I was floating above it all looking down on this bizarre
scene. I knew she was speaking to me but I couldn’t seem to
make her words make sense. I was vaguely aware of her saying
what I should do if after giving the insulin shot Janice’s blood
sugar dropped below a safe level. I remember she was opening an
orange case which housed a needle with a vial on the end, I knew
she was trying to explain this strange thing to me when all of a
sudden I did hear
her ask, “Did you see Pulp Fiction?” I instantly visualized John
Travolta crouched over Uma Thurman, jamming a 3 inch needle into
the middle of her chest. No more out of body, no more flying
above the examining room. Trust me, I was back, slammed into
reality.
Over the past two years I have learned a valuable lesson. Prior
to Janice’s cancer, my self sufficient exterior would have had a
tendency to pooh-pooh the idea of needing help. When we are at
the end of our rope and think we can no longer make it, God
sends and angel. Mine arrived Saturday in the form of our dear
friend Craig (If you have been following these updates for a
while you will know that this particular angel seems to appear
quite often and always has a profound effect on our lives).
Craig took his week’s vacation from his job as Director of
Communications and Events for MOPS (Mothers of Preschoolers) to
come and help us. He didn’t miss a beat, he never does. He
cleaned, organized all the papers around the apartment, help me
set up files, put all our bills on line so they are easier to
track, put an organizing shelf behind the toilet to help clean
up the bathroom, made both of us laugh and turned our temporary
dwelling into what he christened an
“Apartment of Healing.”
Hopefully, you are still with me. By Monday morning, May 2nd,
the severity of our situation outlasted all our attempts to
minimize it. Janice blacked out in the shower. I heard her moan
and crash to the floor of the tub (the good news is that she
felt herself going and started to sit so when she blacked out
she didn’t have very far to fall). I rushed to help her out of
the shower and when I was drying her off she started to convulse
and blacked out again. We were able to stabilize her, get her
dressed and to the clinic for a blood draw. While standing at
the counter to get signed in, she went down again. Plopped into
a wheelchair, she was rushed up to triage and swiftly hooked up
to hydrating fluids. Her blood pressure was indescribably low
and her heartbeat was irregular. What was nothing to mess with
emotionally, turned out to be nothing more than severe
dehydration. They pumped 2500ml of saline into her over the next
six hours then Craig and I took her home where we hooked her up
for another 1500ml followed by her antibiotic 100cc IV chaser
for the virus.
And so goes the Chaffee clock and calendar: Crisis, calm, pills
and pumps…good news, great news, terrifying news…rest,
restlessness, renewal and more education that we’d ever hoped to
digest.
Well, to finish the update, last Thursday we were greeted by the
news that Janice now was testing positive for a bacteria which
required another 2 IV’s a day. What’s another couple of IV’s
among friends, I always say. They now tell us if she doesn’t
test negative for the bacteria by this Thursday, perhaps the day
you receive this, they may have to remove the reliable Hickman
from her shoulder (the tube that runs straight into her main
artery where they do all the infusions and take blood) and
replace it with a PICC line in her arm.
Before I close let me give you the best GOOD news yet. Yesterday
we got the results from last weeks bone marrow aspiration (#2
since the transplant) and there is still no trace of cancer!
Again, this news is the best POSSIBLE right now. It means that
for 60 days the transplant has done what it is suppose to do,
and we continue to be encouraged a day at a time which is all
God calls any of us to do. I can’t worry about tomorrow, all I
know is that today
Janice seems a little stronger and there is no cancer in her
blood, can’t worry about tomorrow, all I know is that
today Barb (another
of those reoccurring angels) came and took Janice to clinic and
I had a very productive day of work, not going to worry about
tomorrow when today
the sun is shining,
today Seattle is beautiful in the full bloom of
spring and my beautiful but still weak bride is fighting like a
banshee to get better.
All of this to say we don’t know what tomorrow holds, but
today, as old and
trite as it may sound, I truly know who holds tomorrow. Thanks
to each of you for your prayers and concerns, please know that
the hundreds of emails we have received over that past two
months while going unanswered, have not gone unread but have
been like a salve to our souls.
We love you.
Jim
"All material, unless otherwise
noted, are owned and copyrighted by Janice Chaffee and James Chaffee, © 2004,
2005, 2006. Permission is granted to forward e-mails, or print for personal use
only. No portion of these updates may be quoted in part or whole in any
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