Sun,
04 Jul 2004
Happy
4th!
Yes,
we are still alive and haven't dropped into a black
hole yet - - although I'm beginning to suspect our
home sits on some cosmic vortex that sucks the life
out of you! Last week was so unbelievably crazy that
I never had two seconds to do an email update.
Jade went for an oncology appt on Monday the 28th
of June and was supposed to start chemo that day.
The CT report was finalized and there was minimal
growth (like .2 cm of growth on each of the tumors)
which made our oncologist unhappy. She decided to
switch to the other chemo since she wants no growth
or shrinkage only. Any growth is bad news and she
wants to try the other chemo (irinitecan and temozolamide).
This chemo is supposed to have less side effects than
what we've had in the last 18 months. (We decided
to start with the bad stuff first a couple months
ago when Jade was the healthiest and could tolerate
it best.) The biggest side effect from the irinitecan
is diarrhea (too much information for ya' yet?) which
is usually controlled with Immodium AD but a few people
are hospitalized and of course they have to tell you
the disclaimer that some have died from the diarrhea
(happiness and light every where we look.)
We were ready to start chemo but our insurance company
(PEHP) says this treatment regimen is not covered
for Jade's disease (DSRCT) so we've been in an all
out battle, bordering on declaring war, to try and
deal with that. If they won't pay for the chemo drugs,
they don't see the need to cover the nurses hanging
the chemo or anti-nausea drugs either. The home phone
and cell phone have been ringing off the hook all
week long as we've been talking with Huntsman Cancer
Institute (HCI), our insurance company and IHC Home
Health to try to figure out what we're going to do.
Jade's oncologist finally said on Friday that he needs
to be in the infusion room on Tuesday morning (the
6th) to get started and we'll figure out the "cash
rate" discount we can get from HCI and keep appealing
with PEHP. Hard to believe I was worried about stroking
out last week.........good thing I don't have a crystal
ball to see what's ahead cause this week was awful
too.
This chemo is five days on, two days off, five days
on and nine days off. He will do two rounds of this
and we'll have another CT scan to see what's happened.
Another lovely snag is Monday (the 5th) is the official
federal/state holiday so we're not sure how we're
going to do five days in this week, but his doctor
wants to get it started this week so we'll see how
it plays out. We could easily do it here at home but
it's an Act of Congress to get home health and our
insurance companies to cooperate. The infusions will
take a total of two and a half hours as compared to
the four to five his old chemo used to take and we
shouldn't have to do IVs at home or through the night
which is good.
The other news from Monday's appt was that our oncologist
is leaving in five to six weeks to practice in Boston.
She's the only sarcoma specialist in the state and
she's been so amazing to work with. HCI will be posting
her position but it'll take quite a few months to
get someone to fill it so they'll have attending oncologists
help with her patients. Sigh. (Happiness and light
around every corner this past week.)
So, our week was filled with no sleep, a million and
eight phone calls, pounding headaches for me and abdominal
pain for Jade. We did have fun seeing my family (siblings
both visiting from TX) during the week and Jade's
extended family reunion (maternal side) on Friday
night. That was an upside from not having chemo. Every
night I wanted to do an email update but was too tired
and couldn't figure what I'd say other than: "Talked
on the phone all day, can't sleep at night. Still
no chemo and no plan for next week. Quite frustrated.
Love ya' !" That email could have been typed
every day last week and been accurate.
I kept thinking of a couple things this past week
to keep me going. One was the Chaos Theory (something
from grad school stuck!) which basically states in
chaos exists order. Like a river which runs and seems
to be chaotic but is actually rather orderly in finding
it's path downhill. I do believe God has a purpose
to the uncertainty which exists in our lives right
now. The other is a quote from Emily Dickinson:
Hope is the thing with feathers
That perches in the soul
And sings the tune
without the words
And never stops -
- at all.
Through it all, I am trying to have faith, hope and
patience (the latter is mostly for the sake of my
cute two year old!) Those three things are expressed
in every prayer I say. Jade and I are fortunate and
have much to be grateful for. I just need to remind
myself to keep looking for it, hiding in the chaos.
Thank you for your friendship, kindness and compassion.
Hopefully you're having a wonderful holiday wknd!
Enjoy your BBQs, corn on the cob, homemade ice cream
and fireworks! Happy Birthday America!
Take care and we'll keep in touch this week..................................
Love ya'....................................Tanya
and co.
