Brain Mets Princess Update!

[Esther]

Ok, I'll share the title with anyone else recently diagnosed.....

Yesterday was a LONG day. We spent Tues night in a hotel by Cedars Sinai, even though we live only about 65 miles away, getting through LA traffic in order to be there by 7:15 am would have meant only being able to sleep like half the night.

Got fitted right off with the headgear, it was surprisingly light weight. They numb the 4 spots on your head, then screw the headgear in those spots. The pressure slightly breaks your skin, but they don't penetrate very deep.

I told the dr. and tech's that's how a watermelon must feel in a Gallagher show. When they tightened the four pressure points, it feels like your head is a watermelon being squeezed in a vise. The feeling passes though, and soon you're not even aware the head gear is there.

Once the gear is in place, they take all sorts of measurements, they double checked at least twice more throughout the day. I had a Pet/CT Scan in preparation for the procedure.

Then they took me by wheelchair....yuck, but they don't want to risk you falling and moving the head gear. I was given a room to myself, with a tv, hospital bed, own bathroom,and a couple of chairs. And there we waited while they made all the calculations necessary for my treatment. I really appreciated that they totally got the fact that I didn't want to be mingling with the other patients, when I looked like a refugee from the mental ward with that metal gear in place.

At about 3 pm I started to feel the 2 screws that were in the back of my head, so the nurse gave me Dilaudid via IV. BAD MOVE! The dilaudid caused me to start throwing up. This delayed the X-knife procedure, as they could not take the chance that I'd start to throw up during the procedure. They gave me Zofran, and Decadron, and finally by about 5:30-6:00 I had been clear for over an hour,and my stomach had settled down again.

So at 6 pm they came to get me for the actual x-knife procedure itself. They said " we looked and looked and cannot find any other lesions than the initial one found, the small 4mm by12mm one. We did not feel that was big enough to give you symptoms so we wanted to be sure there was nothing we were missing."

Now that's a testament for listening to your body if I've ever heard one! I think perhaps sometimes people just ignore minor symptoms for fear of appearing to be a hypochondriac.

The actual X-knife procedure took about 30 minutes. It looks like a thin green laser beam. You don't feel anything at all while it's going on, and is no more stressful to your body than a chest x-ray is.

We left Cedars-Sinai a little before 7 pm and then went on a quest to find a cool restuarant. We ended up at the LA Farmer's Market, and tried a restaurant there. I was a little tired, but in good shape. Appetite a little suppressed, probably from the stress and fatigue of the long day.

But, hey! I feel as good as new today after my sci-fi brain surgery. I made an appt tomorrow to have some new highlights put in my hair. I bought a cool human hair pony tail that is curly, and I'll have my stylist show me how to use it. I'll be the cool chick with highlighted hair, and with a long curly pony tail. This is my post surgery treat.

Sunday I'll be skiing at our local mountains, Big Bear, I want to check my balance and coordination out. I'll take it easy. If i'm not ready to ski yet, we'll just go shopping and relax in our jacuzzi.

Thanks everyone for your caring support. Each and every one of you has helped me SO much!

Esther

AKA Princess Leia now

[Lolly]

Esther, you are one tough cookie...er, princess! Thank you for the detailed report, it really helps to know what this procedure is all about. Not exactly a walk in the park but close

<3 Lolly

[lexigirl]

Esther,

What a fantastic and strong woman you are! I am happy the procedure didn't cause you more than a little discomfort and that you are feeling good enough to get back on your skis.

You are awesome!

Love,
Lexi

[TriciaK]

Esther, thank you so much for your detailed description! So many times half the fear is of the unknown, and now we know what we can expect! You are definately a princess in my book! Hugs, Tricia

[Cindi]

You Rock, Esther! So happy for you that you listened to your body and the procedure saw only the one lesion.

Have fun skiing or the jacuzzi!

Cindi.

[RhondaH]

Have a great week and weekend and have fun skiing!!!!

Rhonda

Wow, what an experience and described so clearly. Now, honey, it's time for you to feel the sun on your face and the little snowflakes dancing on your cheeks. Enjoy BIG TIME. Big hug, Vicki Z.

P.S. I didn't see the earlier thread so didn't hear what symptoms you'd been experiencing. I have a friend who just went through something like this, but not sure what. I don't think she could do gamma knife, because of the size.

[Helen]

You are so cool! Thank you for sharing your experience. I am impressed that you are already able to ski a few days after having the procedure done.
Have fun skiing!

Helen

[StephN]

...falling of a log! Glad it all went so well for you (with the exception of the tummy upset - that would get their attention during a time when you have to be able to lie still). Even though your head is immobilized, they want all systems in "standby mode"!

The beauty of these non-invasive procedures is that you ARE up and around the next day. You are not incapacitated, and the wound care is extrememly minor.

Have a great time celebrating in "baby's new ski boots."

[Becky]

Esther


As some of you know, the festival of Purim (which is coming up soon) is all about the beautiful, strong and extremely intelligent Queen Esther. She stealthly concealed her (Jewish) religion and entered a "beauty contest" to become the King's next bride. By doing so, she was able to save her people from slaughter by revealing that she was a Jew (after her husband signed a decree that all the Jews be killed). In order to save them, her husband armed the Jews with weapons so they could defend themselves. In doing so, the Jews survived this attempted aniliation. (I am not Jewish so hopefully I am not massacring the story), however, this reminds me of you and ironically, your name is also Esther. Beautiful, strong, intelligent and well armed.

Love, Becky

[Barbara H.]

Ester,
You are one strong woman. I'm happy that everything went so well for you. I'm sorry about the nausia. I don't handle that problem well.
Have fun skiing.
Best,
Barbara

[Marlys]

Esther,
What a lovely lady you must be. I am stage 1,NED but reading what you have to offer reassures me that if I do progress it will not be the end of the world. Now go enjoy the slopes!
Love and hugs,
Marlys

[al from Canada]

Wow, what an account....that earns you the promotion to brain mets queen. As one skier to another.....don't forget those pole plants!
thinking of you,
Al

[lu ann]

It's so good to hear of your good experience. It gives all of us hope that brain mets can be treated. God Bless You. Lu Ann

[sherri]

You're the coolest princess I've ever known. So happy for you, enjoy the slopes.

Big hug,

[Diane H]

Glad to hear you got through, such a relief to have it over. Wishing you health and happiness. Hugs