Stepdown ICU!

Karyn has been moved to stepdown ICU...this is great news!

News

Drain tube is out, bandage off and the order has been written to move to stepdown ICU. Feeding tube to come out later today.

MRI Done

The post-op MRI was done this morning and is out of the way. Karyn is comfortable and getting some much needed rest now.

ICU

Karyn is making slow but steady progress but will probably remain in ICU through the weekend while certain functions stabilize.

Nothing Is Ever As It Seems

About an hour after Karyn was wheeled through the double doors of the
PACU on her way to the O.R. for the second time in less than three
months, we all decided that some food would help pass some time in
what was sure to be a long day. So there we were, Thet, my aunt
Natalie, sisters Kirsten and Ann, Karyn's parents and sister Evelyn---
seated at a nice little table on the terrace overlooking the
magnificent view North towards Golden Gate Park, the bridge popping
up over the trees and sunny Marin and Mt. Tam beyond. Yes, the sun is
finally shining here and at the time it seemed somehow unfair that we
could be enjoying such a spectacular vista while she lay on a table 4
floors above us at the UCSF Med Center. It was surely present in all
of our minds though we spoke not of what was going on.

As the conversation continued, morphing from one story to the next, I
couldn't help but notice a woman seated with two people at the table
next to me. She was young, probably no more than 45, well-dressed,
tan and smiling. It was at that moment where I thought to myself (as
I often do these days) "Look at that lucky woman....those lucky,
lucky people." I then drifted back into my table's conversation, had
a Mrs. Fields cookie and finished the last of my Pelegrino. "I wonder
how Karyn's doing".

At that moment, I heard a name that few people would recognize.
"Jeanne Wallace" the woman said. I then found myself doing what Karyn
often scolds me for doing and began to eavesdrop on their
conversation. Maybe this is why I ended up being a sound guy---I can
hear things most don't (or shouldn't) yet at that moment I turned all
of my attention to that table. That's when I began to hear other
words I knew. "GBM", "Radiation therapy" and "Stealth MRI". Surely
someone at that table had been doing their homework.

At that point I pretended to contribute to my own table's
conversation, saying something benign that wouldn't give away the
fact that I had not been listening at all to anyone. Then back to my
right ear...."I am going to have surgery this thursday" the woman
continued, "then I start radiation in two weeks once the scar has had
a chance to heal." At this point it was clear that the "lucky" woman
seated at the table next to us was here at UCSF to have a GBM
removed. I told everyone at our table what I had discovered and, as
it turns out, the effect it has had on me is quite profound.

While it is all too easy for us to look out into the world from
within the bubble of our new reality and see things for what they
appear to be, the plain fact is that nothing is ever as it seems.
Life affects us all in different ways and at different times. That
person driving beside you may look happy as they laugh and talk on
the phone, but you have no idea what they actually may be going through.

I share this because it has really effected my perception of others
in a time where it is hard for me to see people going about their
"normal" lives. And while it is easy to yearn for life as we knew it,
the hardest part of this situation is watching our dear Karyn as she
knowingly faces this incredible battle and endures each step with a
grace and honor that has humbled me beyond words. We humans are
strong beings, capable of enduring things that we would never think
we could handle---that is, until we are in the midst of handling
them. And that is what we are all doing now---handling them.

So as we move into the next chapter of our new lives together, I
think it's important to realize that everybody hurts sometime
(Michael Stipe was right). And as I said one nostalgic evening when
we were still back at Kentfield Rehab, it is so important to focus on
what we DO have and appreciate all that that is---no matter what form
it might take today.

And give that person driving next to you some slack, for they too may
have a best friend and life partner lying in an ICU bed somewhere.

The Silence Is Broken

After nearly 18 hours without speaking, Karyn finally began to speak
again to her dad, sister Evelyn and her mom. Jim told me that she
even spoke on the phone with her sister Erica which is great because
it went beyond the typical "Where are you?", "Who are you?" and "Do
you know why you are here?" questions. Also worthy of note is that
the fever that had developed has now broken and it appears that Karyn
is beginning a slow but steady improvement.

Her family and I are taking shifts around the clock so that she is
never alone and I cannot wait to get there tonight at 8. Just as we
are physically by her side, we know that you are all right there with
us in spirit and it really helps. Thank you to everyone for your
continued help and support.

~Julian

Doc

"She is very strong" Talked about discharge-most-likely to Kentfield-not for nearly as long since we are well set up at home

AM

It was a quiet night here in ICU. Evelyn and I split the shift up and are both with her now. She said her 1st word just now "hi"

CT Scan Good

The doc was by and said the CT scan looked good as in "the surgery went well"

In ICU

Karyn has been moved to the ICU and is sleeping. It's been a long day for all of us but our dear Karyn did the real work.

Karyn is out!

Karyn is out of surgery. Breathing tube is out. Nothing bad happened during surgery. She is in recovery right now.

Update from the nurse.

Word from the O.R. "Everything is going fine."

In Surgery now

Karyn was wheeled into surgery at 12:30. Dr Parsa said he would take good care of her.

Update: surgery has been moved

Update: surgery has been moved forward...karyn is being wheeled down to the OR right now. 11 am - Julian

Surgery Tomorrow

Just a quick note that it looks like Karyn's surgery will now be happening tomorrow (Wednesday) rather than Thursday. Right now she is scheduled in the second slot and will be going in at about 1 or 2 pm. It's about a 5 hour procedure so be sure to keep her in your thoughts.

Karyn and I spent last night talking about a wide variety of things. One thing I can say is that she knows this is what has to be done at this point and she's ready to take the next step. The family will all be there in the hospital and she will be in very good hands with Dr. Parsa.

I will get more info out as it becomes available.

~Julian

Happy Birthday Karyn

Through all the recent developments of the past 24 hours I wanted to
take a moment to stop and wish Karyn a happy birthday. Though we
would all have chosen many other things for her to be doing right
now, I want to recognize her never-ending strength, courage and grace
as she navigates these rough waters.

She is a grace to this earth and to everyone and everything she comes
into contact with. I have always been touched by the level of caring
and support she gives to her friends, family and co-workers. Now it
is our time to return the favor, something that I am now touched by
all of you for having done.

So as my dearest Karyn approaches yet another bump in her road to
recovery, rest assured that it will be because of her strength and
all of our love and support that she will be celebrating many more
birthdays with us all....and the true meaning of what we are going
through today will be known.

Happy Birthday Karyn, we all love you!

~Julian

Setbacks

Friends of Karyn,
Today we're learning another painful lesson in the book of life. With as much energy as Karyn has put into this fight, and as much energy as we've pushed it, Karyn and Julian are now facing an undeserved setback in her progress. Last week, Karyn experienced headaches and blurred vision. Concerned, they went to the doctor on Monday and unfortunately found another mass on her brain. Below are details that Jacqui sent out in an email this morning.

They went to the hospital today to get the results of her follow-up MRI and the news was not good. The oncologist saw a mass in her brain almost twice the original size. She called in Dr Parsa to talk to Karyn and Jules. He advised that she be admitted right away so they can prep her for surgery.

Karyn is back in the hospital now and surgery is most likely scheduled for Thursday.

Parsa said that it could be one of two things. It could be a collection of dead brain matter that has collected in the cavity, in which case, he would just "vacuum it out". Or it could be an incredibly aggressive return of the tumor. They won't know until they go in again.

Now more than ever , Julian and Karyn need our love and support. I did talk to her about the healing circle and birthday tea. I told her that we would postpone it until next month and then we'd celebrate her birthday then.

Karyn sounded ok. Scared about having to go through surgery recovery again, but brave and positive.

This news is unbelievable, unacceptable and not fair. It's Karyn's birthday tomorrow.

I'll let you guys know if i hear anything else but i'm going to try and lay low again and not bother them unless they call me. Please let the group know if any of you hear from them.

love and health to karyn