news updates - April 2007
- The Decision (from Tom)
has decided to have the surgery for a permanent colostomy.
The surgery will be Tuesday afternoon 5/1 and will start at
about 4:30 p.m. The decision was made gradually, after a long
weekend of questions being asked and answered, thought and
deliberation, emotion and tears:
soon as I had finished my last update, I talked to my mother
who reported that Liz had another really bad night on Friday
- lots of pain, like a return to the emergency room when she
was readmitted so many days/weeks ago. Liz had cramping and
at times could not breathe. Mom described it as the "night
from hell." The doctor was called three times but there
was no real relief until early Saturday morning 4/28, when
the nurses finally just put her out with meds. Liz finally
rested. No doubt it was more than just physical pain Liz endured
that long night . . . I stood and watched Friday night as
the doctor explained her options. Liz could not help but cry
at her situation. She was frustrated at not being made fully
aware of just how damaging the radiation would be on her remaining
intestine. There were feelings of futility and helplessness
that no doubt carried on through the night.
morning, Mom somehow found the energy to attend a colo-rectal
conference at St. Josephs hospital that Liz herself had planned
to attend, but now could not. I don't know how she did it;
Mom was wiped when we talked on Saturday morning. But she
did, and she returned to camp Desert Sam with lots of information.
There were other sources of information consulted (no, not
Ask.com) from all over the country.
of course there was the outpouring of support from you all.
The ones that were sent to me were dutifully passed on to
Liz, and I know that some of you simply emailed Liz yourselves.
(I know she read them, as she told me that she liked the song
I included in the last post.) Thanks to you all, you can't
know how much it means.
Wilcox painted a picture for me once that has stuck - he says
that in the soul of us all there is a cup that holds Love.
At times, the cup becomes cracked, or broken, or even shattered
by the stones of life -some small and easily managed, but
some too large to deflect. It is in those times even the ever-present
essence of Love becomes too hard to hold within. But, it is
also at those times that an out-pouring of Love can keep full
what remains of the cup, until the inevitable repairs of time
and will and spirit can slowly take hold. I picture the energy
you share over these multiple connections as a waterfall of
Love, pouring over Liz, filling her cup with as much as it
can hold at this time.
day and night was better for Liz. Pain meds kept her pain
down through out the day. I remember once (maybe it was on
Friday night), the nurse came in with the inevitable question,
"where is your pain now, 1-10." Liz said about a
6. And the nurse responded, "so, are you uncomfortable?"
I had to chuckle at the thought of a 6 being anything less
than uncomfortable. But Liz said she was fine.
took a night off on Saturday, sleeping at home for the first
time since she could remember - a long hard sleep of 10 hours.
(Ok, ok, some of you kids are snickering, thinking that's
just normal, but for us "mature" types, any thing
like that is somewhat of a miracle.)
Sunday 4/29, Liz had decided what she wanted and started telling
people slowly, in her own way, what she thought she would
do. She called her best friend saying she would not be able
to stand up for her at her wedding next weekend. And, late
Sunday night, about 9:15 pm or so, she made that decision
final. We can all have our opinions about what we thought
Liz would, or could, or should do, but she is at peace with
her decision, and that's all that matters.
surgery will be long this time. There is apparently a great
deal involved in creating a permanent colostomy. The doctors
will also take a look at that mass down by her sternum and
see what's up with that.
always, keep those candles lit against the darkness of Fear.
Trusting in Love, however it is you conceive her, keep one
palm toward the Light, wherever it is that you find it, and
the other toward Liz.
- A question for runners (from Joyce)
has the encouraging heart that God gives to Mothers. As she
continues to lift Liz up she gives that same encouragement
to all of us. Today she posed these questions to Liz's running
is it like to come to the end of a very long rope, tie a
knot and hang on for dear life?
How do runners finish when their lungs feel like they will
questions were posted on running lists with members from around
the world; you can see the replies below among the guest messages...
- Quick update (from Tom)
past couple of days has been up and down for Liz. It was late
Saturday night 4/21 that the news came in about the biopsy.
Such great news. But as my last update said, doctors still
have much to figure out to get Liz whole again. And, as life
is known to do sometimes, the good news was tempered by a
bad day on Sunday 4/22 - swelling and pain were up again.
We had an impromptu celebration for Jessica's Birthday at
the hospital out in the waiting area. Liz took us in one by
one, but was really not up to a celebration. Jessica took
her cards in to share with her mother, and they were able
to share their special day together. You can see pictures
(Monday April 23), was quite eventful for our girl. In the
morning the doctors performed a colonoscopy to get a better
idea about what was happening. The doctor thought he might
place a stent into the narrowed area of the colon/rectum.
However, once he got in he decided against placing the stent.
The doctor said that the colon has real potential for normal
functioning and is just swollen right now. The stent apparently
has a very real chance for complications, including migration
inside the colon. Of course, the doctor would rather avoid
such complications while there is still a chance for recovery.
the next planned step was the replacement of the stents in
the kidneys. These were placed a while back to make the kidneys
function normally and help remove the fluids that are building
up. Apparently they needed to be replaced, or made to work
better. Well, at the last minute there was a cancellation.
So, last night Liz went in to get this procedure done. Took
a little longer than I expected, but she was back at her campsite
(room) by 8:30 or so.
today Liz will have time to rest from yesterday's events.
As my mom said in the last update, they are camping out at
the Desert Samaritan (not ready for national park) campsite
for the foreseeable future. The doctors have promised not
to release Liz this time until they are sure she is functioning
normally. Today (April 24) or tomorrow they may start trying
to introduce some sort of liquid diet (that does not involve
an IV) and test the work.
for the mass, the doctors will continue to look at it carefully
to see what it does. The biopsy was negative, but I think
they are learning (as are we) that the best tests medicine
has to offer are not the only place to rest (with any certainty)
our trust. We know where that trust should be placed, don't
JUST IN: As I write, my mother calls. Liz had a productive
("crappy" night). LOL. Ok, ok, my Mom says the doctor
did not laugh either. But this is a good sign for her. Isn't
it amazing that after over two weeks of no eating at all the
body can still produce waste? The nurses told us that we are
all constantly collecting dead cells, toxins, and other waste
from all over your body that must be passed out. It's not
just what you take in from food. Anyway, Liz's body finally
started releasing some of that last night. Hurray! Just another
example of life's paradox - how having a "crappy"
night can be a wonderful thing.
will write more when we know more.
then, keep those candles lit against the darkness of Fear.
Trusting in Love, however it is you conceive it, keep one
palm toward the sky, and the other toward Liz.
again for all your support.
- PostScript on Incredible GOOD News! (from Tom)
share in your expressions of joy at the wonderfull news yesterday.
Thank you again.
Some of you have also responded with questions about where
we go from here. Well, we ask that you continue sharing your
love and support for the time ahead. Here is part of an email
I received from my mother this morning, elequent as only she
can be, which may answer some of your questions.
is still in the room--relatively quiet and motion free.
I have become accustomed to the sound of gurgling oxygen
water. I pretend that it is a stream next to my camp. Last
night was number six at this new camp in 401-C; ten nights
all together at the Banner Desert camp ground. And it is
not yet time to leave. Liz had a rough night. She developed
some new discomfort high on her right side where the swelling
has increased. Now that we know that she does NOT have cancer
we both wonder what she is up against and are most anxious
for the specialists to figure it out. She was excited to
hear the news last night that the mass is not cancer but
instantly her joy switched to frustration when she realized
she was back on uncharted waters."
will write again when we know more. It may be a while. It's
such a joy that Liz is cancer free. And while her marathon
has suddenly, wonderfully, been shortened from what the Doctors
were saying just a few days ago, Liz still has a few extra
miles to run. Again, she can not do it without your love and
At times like these, with so much anger on the news and uncertainty
surrounding a loved one, I turn to music. A favorite inspirational
song of mine in times of uncertainty and fear comes from David
I will share his words with you (with very slight changes
for format purposes), as I play the message of hope over and
over in my head. Click here to
hear this song:
SHOW THE WAY
say you see no hope,
you say you see no reason we should dream that the world
would ever change
You're saying Love is foolish to believe
'Cause there'll always be some crazy with an army or a knife
To wake you from your day dream,
put the Fear back in your life...
But look, if someone wrote a play just to glorify what's
stronger than hate,
would they not arrange the stage to look as if the hero
came too late
He's almost in defeat
It's looking like the evil side will win,
we're on the edge of every seat,
But, from the moment that the whole thing began
It is Love who makes the mortar
And it's Love who stacked these stones
And it's Love who made the stage here
Although it looks like we're alone
In this scene set in shadows
Like the night is here to stay
There is evil cast around us
But it's Love that wrote the play...
And, in this darkness, Love can show the way
now the stage is set.
You feel you own heart beating in your chest.
This life's not over yet.
so we get up on our feet and do our best.
We play against the Fear.
We play against the reasons not to try
We're playing for the tears burning in the happy angel's
It is Love who makes the mortar
And it's Love who stacked these stones
And it's Love who made the stage here
Although it looks like we're alone
In this scene set in shadows
It looks like the night is here to stay
There is evil cast around us
But it's Love that wrote the play...
And, in this darkness, love can show the way
keep those candles lit, a sign of Love and hope conquering
the darkness of Fear. Trusting that love, however it is you
conceive it, keep one palm toward the sky, and the other toward
Liz. I firmly believe that no matter your religious or spiritual
beliefs, it makes a difference.
- Incredible GOOD News! (from Tom)
biopsy came back negative for cancer!
Honestly, what else can I say?
Except, thank you, thank you, thank you,
to all of those who said a prayer,
or who lit a little candle,
or who just closed their eyes and opened their palms toward
Have a blessed Sunday. I know we will.
- Yet I Will Be Confident (from Tom)
thanks for the amazing outpouring of support after that last
update. People are lighting candles all over the world for
right to it . . . Liz is still in the hospital, but the planned
surgery to fix her colon was cancelled at the last minute
on Tuesday 4/17, rescheduled and cancelled again on Wednesday
4/18, and now has been indefinitely postponed, pending the
continued relief on her system. The swelling, which on Monday
was described as looking like a full term pregnancy, has diminished
considerably. The pain has gone down to around 5, more or
less, from what Liz said on Tuesday was a 12 or more (on the
ever lovable 1-10 system that the hospitals now use). (Did
you ever notice that on the card in the hospital rooms, the
face is still smiling for a moderate pain level of 2 - I don't
know about you, but I'm not smiling with moderate pain.) The
drugs they are using are great (thanks Pfizer), and they are
not knocking Liz out. I think I can honestly say that Liz
is in good spirits, for someone who's in the hospital, and
who just had surgery, and who hasn't eaten in days, and .
. . well, I could go on.
anyway, the doctor really wants to avoid doing any surgery
at this point until he knows more about the mass. Yes, the
mass; well, they did a biopsy today and are running special
blood tests to measure Liz?s CA-125 levels and such. We are
told that the biopsy results may be in by Saturday, but maybe
not until Sunday. The blood results may be in tomorrow, or
Saturday. This is all, of course, "doctor-speak"
concerning the absolutely relative measure of "doctor
time," so you just never know. Frustrating.
has moved out of the pre-surgery area and is in a much bigger,
nicer room. The struggle (besides the pain, and the wires
and the tubes and the . . well, you know) -- is that in the
last 11 days Liz has eaten no more than a couple bites of
apple sauce and a little Jamba Juice (all that during her
brief 30 hours at home last Sunday afternoon/Monday). At least
she can joke about it. We asked if they would put a chocolate
shake in her IV. The nurse was not amused. Liz is happy to
let you eat in the room - as long as you don't enjoy it (and
it's not a chocolate shake). Did I mention what's she's craving?
Well . . . you know. Otherwise, Liz is comfortable, and talkative,
and walkative as well (careful not to flash too many people).
is camped out on her cot in the room. She has an APB on the
"really good cot" that must be in use somewhere
else. We will be distributing pictures and a reward soon.
After last night, we will make sure all heavy objects are
removed from around Liz before bed time so Liz can only throw
relatively soft blankets at Mom's head when Mom dreams too
loud in the middle of the night (also known as talking in
your sleep). Mark, Jess, and Andrew are also constantly present.
They have all have staked out their space. The rest of us
now bring our own fold out chairs (those floors really get
hard), or sit just outside the room at the table. Fresh troops
have arrived (Yvonne), and the clan is hunkered down again
for the long haul.
think we have all gotten over the initial shock and dismay.
Now, we are waiting word from the test results.
thanks you all for your emails and prayers and intentions
and positive energy. If you reply to me, I forward your words
right to both Liz and Mom. I am not sure they can get them
at the hospital, (which still lives in the dark ages of dial
up), but I know Mom goes home at least once each day to collect
your spirit and take it back with her
will post again when we know something definite. Can't say
when that will be. Until then, keep those candles lit and
the positive feelings floating toward Arizona.
wrote to close one of her updates months ago:
Lord is my light and my salvation; whom shall I fear? The
Lord is the stronghold of my life; of whom shall I be afraid?
Though an army (cancer) encamp against me, my heart shall
not fear; though war (cancer) rise up against me, yet I
will be confident." (Psalm 27: 1, 3)
think she still means it.
- Light a candle for Liz - Moments Matter (from Joyce)
ask everyone to light a candle for Liz. She needs this light
before her as she makes her way through this dark tunnel.
There are candles in grocery stores just for this purpose
and they are long burning--usually in tall glass containers.
It would mean everything to me to know that these candles
are burning all over the world for Liz.
has an assignment. I am not clear about all the details but
I am absolutely sure that she has come to teach us all about
love and that moments matter. Never spend one moment
NOT doing what you love to do and with those you love most.
note: Snap a digital picture of your candle burning and then
here to send it to me. We'll light up the website with
- Your Prayers are Needed (from Tom)
am Tom, Liz's brother. Normally my Mom, or Liz herself would
be sending an update about now to tell your of Liz's progress.
But, neither can do so right now. So I am giving an update
and request once again that you all send thoughts of hope
you all know, Liz had her colostomy reversal last week, the
reversal was considered a success. Liz returned home on Sunday
4/15, much worse for the wear, but everything was looking
up -- the long awaited end to Liz's marathon was heading toward
the final stretch. Of course, she has been in pain after her
surgery, but nothing really unexpected . . . until last night.
midnight the pain was simply too much for Liz to bear - Mark
and Mom took Liz to the ER. Something had to be wrong; this
was simply too much pain. The doctors were able to make Liz
comfortable, and they ran tests to figure out what was wrong.
Well, Liz's colon was blocked, or at least too narrow to let
anything pass. Because Liz had eaten so little since Sunday,
it seemed hard to believe that there could be much that could
be blocked, but that was what the doctors decided was the
source of most of the pain. Thankfully, Liz has been heavily
surgery had been planned for this evening to fix the blockage,
and possibly create another, perhaps permanent, colostomy.
At the last minute, the surgery was postponed. After further
testing and a couple of alternative treatments (do you really
want to know?), the doctor believes there is hope that the
colon repair can be salvaged. The doctor says if things continue
to look good through tomorrow, he will attempt to perform
a more limited surgery by placing a stent in the colon to
keep it from collapsing. He wants to try anything before giving
up on the reversal and redoing the colostomy. The doctor says
there is even a chance that the blockage (narrowing) of the
colon may still resolve itself with a little more time. We
are hopeful and will know more this time tomorrow.
here comes the really gut wrencher -- when they ran all these
tests, unbelievably, the doctors also discovered what they
believe to be another tumor in Liz's pelvis area. They don't
know much yet. More tests will be done tomorrow morning. The
doctor does not believe the mass is scarring. As Liz said
in her March 8 update, the doctors had just given her a complete
pre-surgery review and said she was cancer free. So, what
is there now wasn't there even 6 weeks ago. And the mass is
too dense, the doctor says. The doctor is convinced it is
the cancer, returned, aggressive, and rapidly growing, just
next few days will be hard. Mark and mother have not slept.
My Mom says her heart is breaking. They most of all are devastated,
as are all the nearby family and close friends who gather
of course, Liz most of all, has all these feelings, and is
also the one who must endure yet another physical and emotional
like getting close to the end of the long run, only to find
that she must run an unknown distance longer than she thought.
She has the spirit to make it through yet another, added,
mile. She has already endured more than I think I could ever
take. But, she cannot do this without all your help and energy.
again, we call out to those that Love Liz, as we do. We ask
you to send your thoughts, prayers, positive energy this way.
will try to keep you updated as the week progresses.
as Liz would say:
you for all of your prayers! God Bless."
- Liz is home (from Joyce)
came home from the hospital yesterday. Recovery from this
surgery is being much more difficult than we imagined. Time
is the great healer and as soon as Liz is feeling better I
am sure she will send her own update. Your prayers and concern
surround her as she heals.
- Surgery was successful! (from Joyce)
went into surgery yesterday afternoon (Wed 4/11) around 4:30
p.m. Arizona time as planned. The surgery took about 1 hour
40 minutes. All of our goals were achieved. Dr. Venketesh
was able to work out of a small incision about 3 inches long
rather than a possible large midline incision. The reversal
went well and Liz came out of recovery in great shape. I spent
the night with her. She was walking 2 hours after transport
to her room. She is hooked up to a PCA which allows her to
deliver pain medication when she needs it. That sort of control
means everything. She had an amazingly wonderful night; took
lots of naps inbetween nursing interruptions for vitals, blood
work, etc. My job was to provide ice chips, encouragement,
leg rubs, and anything else she needed/wanted. It is an honor
to serve her. She has set some pretty lofty goals for today--to
walk every 2 hours, get rid of the hose and inflatable garments
that prevent blood clots, get rid of the cathater, blow into
the triflow ten times every hour and so on. She will do it!
Mark and I will exchange shifts over the next while. There
is no certain projection for hospital time. It depends upon
how quickly her body kicks into action and all systems begin
to work again.
- Time for the Grand Finale (from Joyce)
is the week we have been waiting for. Liz’s surgery
is scheduled for Wednesday, April 11. We
refer to this as the “grand finale” surgery. Due
to Liz’s determination to do all she can to support
her body at all levels—cellular, mental, emotional,
and spiritual—she goes to this surgery in better condition
than she has been in a long while. All tests indicate that
her body is cancer free, healed and ready for the reversal
surgery. Your thoughts and prayers will top it off!
had a wonderful Easter family gathering. Because I am still
healing from a bad fall and fractured rib(s) I asked my family
to take over this year and do most of the planning and cooking.
They did! Liz and her daughter Jessica, made the famous family
potato salad; Alan made baked beans and brought the ham; my
granddaughter Breanna, learned how to make the Easter bread
as I instructed her on each step. Other family members took
over with household preparations and shopping. We used paper
plates and plastic wear and everyone is still breathing. It
was a hard one for me to let go of control but the results
were wonderful. I did not feel tired at the end of the party
and was able to spend more time visiting with our group of
reached another milestone this past month. She completed her
IRS training in Portland, Oregon and is now a fully trained
IRS agent. Her work continues to be a great source of satisfaction
and support. Whatever you may think about the IRS they sure
know how to take care of their employees and support them
during difficult challenges. It has made all the difference
own good news is that I completed my book proposal to the
satisfaction of my New York literary agent, sent packets to
her last week and we are getting great feedback from the first
four publishers who reviewed my project. I better get busy
and finish writing the book, a memoir titled “Ceremony
of Dying: releasing, remembering, celebrating.”
the Easter photos that are posted on the Photo
page. Some folks are still a bit surprised to see Liz
with a thick head of dark curly hair. I think it is adorable!
care and continue to pray for Liz and her family. You make
2007 and earlier news updates