X marks the spot...
 

After much research on clinical trials, a lot of worrying, stressing, networking, and dreying (Yiddish for driving yourself nuts) I've made a decision...

I am going to do radiation to my sternum mets. Third times a charm, right? I've had radiation twice but never to this particular area so I'm hopeful that it will do the trick.

My lungs are stable. NED in the head. My oncologist said my treatment is working in my body, except for the bone mets. She even feels that staying on Zometa is wise, since I've had no new bone mets and it is protective.

Since mets in the manubrium of the sternum is "all" that's going on, I do not qualify for the clinical trials that I would consider. Most of them want "measurable disease of at least 1 cm in an organ or soft tissue". WHATever.

I did my verification/dry run today. They used my microscopic "dot tattoo" from 1996 to locate me (here I am!) and today they added a big black "X" with a sharpie marker and they said to leave it until Monday. I wished for my big box of colored pens to help play connect the dots. They remember my down on the LL level of the Comprehensive Cancer Center, and said, "no gown" right? Right on! I said. I am still a stripper. Haha. I have avoided the hospital gown - proudly - for 13 years. It's mah thang. I don't do the gown unless I'm on the red carpet.

I'm trying really hard, to stay in a good frame of mind. And to keep my eye on the prize. And the fact that I still have some choices.

That's my weekend update. I love you all.

Flori

I know you will win that prize Flori, because you are a great fighter. Now go get 'em girlfriend! I wanna hear those mets screamin' in NJ!

You go girl! Zap that met!

Love

Jacqueline

are you treating it at Stanford?
 

Your post didn't say.

Best of luck,
Lani

Flori,

Your decision to decide on a local treatment sounds good in this case. With everything else under control a local treatment is a good option.

I'm praying that all goes well and the rads really zaps those pesky mets.

Hugs,

Joan

Hi Flori

Would you have a recipe for gluten free matzos? I miss eating them. I bake my own buckwheat bread & muffins, but matzos I have yet to try.

Love

Jacqueline

Laughing at matzos
 

Yep, saw the photo. And thought: Flori is not the kind of person to give up. So I figured that by know she probably has THE perfect recipe for me....

Re. gowns: We don't do gowns in the Netherlands. We go into a cubicle to change, and when they are ready for us, we come out and get on the table. Nude from the waist up.

Jacqueline

Flori,

Hope you are feeling better. Glad you have decided on a treatment. How often do you take the Zometa?

Amelia

Flori

Glad you have made a decision about your treatment. I think about you often and how well you have done fighting this disease for so long, especially days when 18 months of fighting feels forever! You inspire many people.Ellie

Mazel Tov dear Flori on your decision to zap those mets with rads - I do believe that the third time's the charm for sure.

Take it easy, keep the faith, enjoy your Pesach -

all the best
caya

the answers
 

Oh ladies, you make me laugh and feel so well- understood. Thank you all.

Lani - Cedars Sinai, in Los Angeles. I wish I could remember if I'm getting PHOTON or Proton and then Electron. I guess it's not really important - I just feel suddenly senile. Whatever it is I've decided to put clear nail polish over the "x" spot until Monday. It really looks like a weird tattoo now. Ha!

Gluten Free Matzah - good point Debbie - LOL. Thanks Jaqueline for having faith in me. While I'm not a quitter, I also know when to quit. The recipe was from the internet, and there were several that followed the same recipe. Oatmeal, grind it into a flour, mix with water and knead until it's pliable. Set aside some flour. Roll into small round blobs. Bake 11 minutes. The whole thing must be done within 18 minutes to be considered Kosher. Whatever. Did my fleeing Ancestors have Timex watches? Some of these laws are pretty funny. Really - it's a lot of work for crappy tasting matzah. My exciting fire aside, it really tasted horrible which is why I was trying to toast it up. I am going to serve the wheat-eaters real matzah and for Tony and I, we'll eat crackers. Favorite brand: Mary's Gone Crackers. They are YUMMMMMY. Kosher for Pesach? Highly and totally doubtful. I'll let you know if God notices.

Schoolteacher - I get Zometa every other chemo treatment, so every 6 weeks. The current protocol is every 4 but I don't have a port and I can't have chemo every 5 minutes. Too impatient. Too depressing. With the bone progression I "offered" to come in every 4 weeks if my onc thought it would be more effective. She told me that the protocol is going to change to more space between treatments - probably every 6 weeks anyhow. So there you have it.

Have a great rest of your weekends and hope everyone has many moments of feeling peace!
xxoo Flori

What to wear to radiation...
 

At Cedars-Sinai, they have these little closets surrounding the radiation waiting room. You are supposed to go into a closet and change into a gown. Then sit (with others-boys and girls) until you are called.

Here are my issues:
#1. sitting around in a blue gown with strangers
#2. the gowns suck - they are SCRATCHY
#3. leaving my clothes unattended, in public
#4. you have to open the whole stupid gown as soon as you get into the room anyhow.

The Flori method"
#1. Smile and say no thanks when they offer the gown.
If they don't back off, using direct eye contact, say, "I am a stripper and prefer to disrobe in the room". DO NOT LAUGH when you deliver this line.
#2. IMMEDIATELY upon entering the radiation room, start to take off your jacket, sweater, top shirt, etc., and strip down to the T-strap t-shirt.
#3. This is a dark room at Cedars, so they can see that I'm getting rid of my clothes, but they can't really "see" too much.
#4. At this point they hold up a sheet, like at the massage place, and I take the rest off.
#5. At the end of the zaptron - reverse process and go home! Saves time changing and they never mind me!

I like the fuzzy robe idea, I just don't like wearing strange clothes that I didn't personally wash.

xoxo

Hi Flori,

Have missed you and just tonight saw your number (I think) on my caller ID yesterday...my cat jumped onto the phone and erased all messages for the past few weeks. I am happy to hear that you will be getting that radiation to stop those nasty bugs. I love your idea of stripping down in the room. When I had rads, I went into one of those little closets but didn't have to wait out with the "crowd' and went directly into the rad room. Since I am not inclined towards modesty, I just walked in half naked. they were embarassed..but didn't faze me at all.

I've been a bit down with the anemia and lack of neutriphils and they are deciding if they can continue this treatment shoujld my numbers not rise enough. At least i am back home and even went to a baseball game today (my littlest grandson in Santa Barbara, where I'll be staying for the next week).

I'm sending you good wishes and lots of love for your upcoming rads. Let's pray that takes care of everything. Mucho love to you, Vickie

Dear Flori

Did you ever retest your mets for hormone status? Just asking because hormone positive bc loves the bones best. Your hormone status may have changed and an AI or tamoxifen may do you well. You might ask your onc to "chance it" even without a new pathology reading and put you on something anyway.

Zap those buggers out!

Hi Flori,
Ellie is right, you inspire us. I wish you good things
with your decision on radiation. Beau is absolutely beautiful.
My son is a shepherd guy and is pushing to bring
one home, but my lab would be devestated.
Love & prayers,
Laurie

Well Flori, if those mets in the sternum aren't going to make themselves useful (for trial qualifiers) then I agree, the heck with them. Ya might as well be rid of the stupid buggers.

Good for you! Show them who's boss.

Much love
Chris

I love your plan, Twinkie!

I avoid gowns, too... separated at birth, we were.

Ha! (silent chuckle)..Ha! Only you crazy gals could turn radiation into comedic relief ;)

Oh Flori! I just love reading your posts when you are in the zone! full of humor and spirit, cheering everyone here as well!

I am wishing and praying hard that this will do the trick and you will be NED again!!

love,
shobha