Mon,
26 Jul 2004
Continue
to Survive
Hey
there. It's Monday night and Jade and I spent all
day at Huntsman Cancer Institute (HCI). He had an
oncology appt with Dr. Albritton (our last one before
she leaves for Boston) and then chemo afterwards.
A little background on how last week was: Awful. Terrible.
Miserable. One of the side effects of the irinotecan
(chemo) is diarrhea. They have patients take Immodium
AD like every two hours to help control it. Jade had
a 24 hour period where he was following HCI's guidelines
for controlling the diarrhea and took 12-14 pills
and it didn't have any effect at all. It actually
was getting worse the wknd after chemo and last Mon
and Tues. By Tues morning Jade was starting to wonder
if the tumors were causing a blockage. He went to
HCI and had an abdominal x-ray which showed a gas
pocket forming, showing a blockage but they weren't
sure what it was due to. He had a CT scan on Thurs
but because of the state holiday (Pioneer Day) in
Utah last Fri we weren't able to know results until
this morning. Jade has been on a liquid diet until
the past couple days. (It's actually called a "heavy"
liquid diet.) With all the digestive problems, he's
been eating popsicles, Gatorade, ice cream and a couple
pieces of toast during the week. He has been trying
to eat since Sat though and it's gone ok - - up and
down - - but ok.
Dr. Albritton informed us the tumors didn't grow at
all with the chemo. Great news. Jade actually went
one week extra in-between chemo rounds due to all
the fights dealing with insurance covering the chemo
costs or not. So, we're thinking they may have even
grown with that extra week and possibly shrunk back
to their "original size." Whether there
was shrinkage or simply no growth, it was great news.
Dr. Albritton wants Jade to do two more rounds of
this chemo (he started today in fact) and then do
surgery to de-bulk the tumors. So that would give
us six weeks for chemo and surgery about the end of
Sept. We have a consultation with our surgeon on Fri
so we'll get her opinion too.
We are going to have a new oncologist at HCI when
Dr. Albritton leaves but we talked with her about
flying back periodically to meet with her as we reach
major decision points in Jade's treatment. So, basically
she's given us a good road map for the next two to
three months and if we need to consult with her we
can go back and get another game plan or regroup if
or as things change. We'll being seeing an oncologist
who deals with lymphoma until HCI gets an oncologist
who specializes in sarcomas. Oh, the joys of having
freak cancer. Cancer itself isn't bad enough.....we
get to have freak cancer.
Last Tues Jade and I were really quite low. It was
quite somber and teary here at our house wondering
if this was a sign of what was to come in the next
few months. He wasn't sleeping and was quite uncomfortable.
As I was carrying laundry down the hall I saw a car
parked in front of our house and looked out the peek
hole in time to see a friend of ours walking to the
porch. He said he had been thinking of us all morning,
couldn't get us out of his head and wondered if we
were ok. I said, "No. We're really not ok today.
Thanks for coming our." We spent the next couple
hours talking and by the time he left we were so comforted
and had amazing peace individually and in our home
again.
While we spent today at HCI, I had a couple books
with me to read. One was a Louis L'Amour. I was reading
the foreword describing life in the early days of
the west which states, "Stories of the frontier
are exciting because they are about dyanmic people,
the ones who have been through the mill. The men and
women who arrived in the west were survivors, they
had to be. And they had to continue to survive."
I sat and thought of this concept of surviving and
continuing to survive. Jade and I have reminisced
quite a bit this past week since it is the one year
anniversary (22 July 2003) of him going into LDS Hospital
for his marrow-oblative chemo and the start of his
bone marrow transplant. I think back to surviving
that experience and how ironic it is that we are having
to continue to survive now. (By the way, it's a good
thing I don't have a crystal ball. I couldn't have
coped last year knowing what we'd be facing this July.
Makes me nervous to think of July of 2005. Sigh.)
I am quick to recognize though the individuals who
help us continue to survive. While I certainly feel
like Boo Radley at times (see "To Kill A Mockingbird"
for further explanation if necessary), Jade and I
don't exist in a vacuum. Friends showing up on your
porch on a Tues morning out of the blue are the critical
moments which help you continue to survive. Sweet
emails from friends, family members, co-workers and
neighbors help us continue to survive. We are always
impressed with how others cope and continue to survive
their various challenges as well. We get inspiration
from observing your strength and courage.
So, I think all in all today we got the best news
we could have (given the parameters of having freak
cancer.) We'll see how chemo goes this week and next
(it's a two weeks on, one week off regimen.) Oh, I've
attached a photo of the three of us from my family
reunion a few weeks ago, the night we did pictures.
Garrett is growing up so fast! Changes every day.
Thank you for your love and continued support. Enjoy
summer. We certainly are eating our share of popsicles,
otter pops and ice cream. Take care..............
Love ya'................................Tanya and
co.
