~Gamma Knife It Is, Mighty Oak~

[Believe51]

Today at 4pm eastern time we have a consult for the gamma knife. The hospital we chose was on of the first to do the gamma in my area. I would love to go to Dana Farber but will take too long for the compilaltion of records, waiting for either Dr Wiener or Dr Lin to become available and the other norms. We have seen Dr Lin before and although I did like her, Ed & I have chosen to atleast go for a consult here. If things can be rushed better, DFCI is still an option.

Many of the clinical trials I have explored, not finished yet..(Lani keeps me busy & out of trouble~wink) need woman as a requirement. I still need to explore more options but feel I need to get in today to feel better, Ed too.

We leave for vacation on the 17th and I was going to reschedule but all doctors involved said "not needed". Brain mets are far more important than my Brain Insanity..LOL! This is not a matter of working around our vacation, but they think he can do it without postponing anything.

The ball needs to start rolling. Remember, if this is a bad dream please wake me up....I have slept enough.

As for the so called "Remission Cruise", we have renamed it to "Second Year Cancerversary Cruise".....Told you we were rebels.

Please do not worry too much about us here, we are embraced by your knowledge, love and support so there is nothing else anyone can do.

Imagine for a moment....The Radiologist Oncologist felt confident with his past 'miraclous results' that another Brain MRI was not needed until 6 months. We had ours in 3 months thanks to me being 'demanding' again. And thanks for you all for teaching me how to do it!...

Love you all....can you all come with us today?? I think you can all fit in my pockets>>Believe51

[Yorkiegirl]

Prayers continue for Ed. I know this will knock those met's out.

I'm happy to hear you can still go on your cruise.

[chrisy]

Well girl, you are amazing! I think it is a good sign if the center you are going to has a lot of experience in Gamma Knife, which it sounds like they do. And good for you for pushing on the MRI! You must always go with your gut.

And, um, since the Gamma Knife will eradicate those brain metskis, technically might Ed be in remission again? Whatever you call the cruise, kudos to you and Ed for living it to the max!

You go!
Chris

[Jean]

Oh Marie,
You are back to your old fighting hard self.
Sounds like you have your ducks lined up in a row.
If I could I would go with you...but know I am there with you in spirit.

jean

[tricia keegan]

I too will be right there with you always in spirit Marie, wishing you both the best outcome and lots of love.

[dhealey]

Sending my prayers to you and ED. You are both so strong, you will come through this. Happy Labor Day Weekend! God Bless

[Sheila]

Marie & Ed
Wish I could be with you today as i know how nerve racking these appointments can be....you will be in my thoughts and prayers....you WILL get to NED...its in his name!!!

[DanaRT]

We are with you all the way(!)...look in your pocket. I am sending positive energy your way.
Good news that you can plan on going on your cruise! I have a good feeling about you and Ed leaving on the 17th, it is our 25th wedding anniversary.

I am going to have to learn how to insist on tests and scans from you.

Hugs and more hugs,
Dana (and Gary)

[hutchibk]

you all are rocking right along- as Her2support members are wont to do! Go get em gamma! Enjoy your vaca... and tons of love and well wishes!

[Becky]

It can be a rough road but your on top of everything and still clocking 8 minute miles uphill, downhill and sideways.

I love you and your spirit Marie. I'm with you.

[Joan M]

Marie,

I'm very glad that you and Ed have decided already what to do and are still going on your cruise.

(And thanks for the reminder ... I haven't had a brain MRI since May 2007, which was my first one.)

Peace and blessing.

Joan

[Believe51]

We met with the surgeon who now will perform the Gamma Knife. The Swedish doctor who invented this machine worked closely with our surgeon all the way through this invention (a Godsend). Our new surgeon has devoted his life to this machine. As we listened to his wonderful Swedish accent, we gained confidence and more hope than we went in there with.

There already is a team put together, one of them being the Radiologist whom gave Ed his Whole Brain Radiation. The doctor gave us kudos for insisting on an MRI we were not 'due' for. Remember ladies, we DO have some sort of control to what happens on this journey. Our knowledge is our power and sometimes there is a fine line between what we know and what we feel. We did not feel we should wait the 6 months. Some of that is pure paranoid thinking but waiting that long is just not feasible...that is the reality speaking!!

I feel great and Ed is at the top of his game. This cancer is NOT in the rest of the body. You know, last week we thought we were NED and finding this news was just as bad as the first day of diagnosis. We are hopeful that this Gamma Knife will do the trick. The six spots are in the right areas (huu, sounds crazy) but one is one the brain stem, of course that will get the extra radiation. No edema! (except in the met that hemorrhaged) No mass!

This procedure will be done in the next week. And girls....just want to revel and give myself a pat on the back for being "a nice demanding" caregiver per doctors quote....: Found out Tuesday and seen our Oncologist same day. Organized appointment for Wednesday, re-explored clinical trial information, Gamma/Cyber Knife recaps, DFCI phone calls; Thursday seen doctor & team who will perform Gamma procedure. Waiting for appointment. Sounds rushed but we had already had this in the works just in case this time arose.

It arose. We were ready. In two days we are set. Remember, be a 'nice' demanding caregiver/patient...wink, wink, wink.

We feel strong and thankful. Truely blessed to have this family right behind us through this all>>Believe51

[pattyz]

Marie,

This is such good 'news'. A great plan. Top people with much experience, sounding positive from the get go. Affirming that no edema nor mass effect were good things...

Remember, I had a pons/brainstem met treated totally successfully. The current one is a 'newbie'. And yes, it is a very scary place to have one.

btw: My follow-up brain MRi's have been every TWO months, with an occasional three month, for the past six yrs........ that's alot! I am pretty sure every 3 is the standard at minimum, but many also do the every 2 mos. You go girl!

And, it is possible that Ed could have GK again, should the need arise.

Hugs and best to you both,
patty

[Believe51]

Have I told you lately how safe I feel with Heros like you watching over us??>>Believe51

[Faith in Him]

Marie,

Way to go. It's a good feeling to have your game plan all set. You are an amazing and wonderful caregiver. Sending Ed prayers for a speedy recovery.

Keep the faith,
Tonya

[pattyz]

Marie,
oh dear. I feel pretty uncomfortable with that term. Really I do.

I have been one damned lucky person. There are so very many, too many, who have been the most amazing women (and men) full of all the best there is to be... and yet they have not been 'lucky'.

What I am glad for and do appreciate, is that my own experiences are able to help you and others in some way or another.

so, thank you for your thanks
patty

[StephN]

Dear Marie & Ed -
Yes - six months is WAY to long for followup for brain mets. Don't know what they were thinking?!?

In my case I had a 6 week check (MRI) after Gamma Knife then every two months for 3 times, then every 3 months for 3 times, then every 4 months for 2 times and now I am finally up to a 6 months followup after 3 years of no new tumor activity! And this close followup is with me being NED everywhere else.

All your reading here must have sunk in that NONE of us ever had a 6 month wait for followup after treatment to our brains.

I did not feel that my rad onc is just keeping close track for the money involved, as I go to a huge medical center that is more than busy! He just is a concerned and proactive doctor.

Glad you are on board with a great Gamma Knife doc. He will NOT let Ed slip through any cracks in their system.

With Gamma Knife, there is so little recovery that you will both be able to fully enjoy your cruise!

[Believe51]

My thinking to the tee. Although Ed had a great result with the WBR and the healing was faster and better than the norm this remains the truth:

He is stage IV, there is no other stage after that! No turning back because I would have waved my wand first starting with him and then all my friends.

This is not his Oncologist, it was his Radiologist Oncologist. Regardless, why 6 months?? He had happened that he was going every 3. The more I think about it, the more I wonder WHY?

Forever he shall get one at 3 months. End of story. And may this story never repeat itself with anyone else. One more reason to be in charge of our own destiny to some degree!! Good thing we are the

[IRENE FROM TAMPA]

and am so sorry he has to go through this again.

Pls tell Ed not to give up. I am in my 12th year now with constant treatments and have lived to see many news things happening and welcomed many new grand children into this world. so "if" and I say "if" this should also be Ed's battle to bear for many years to come, there are so many new developments since I began my journey and he can still live a very happy life. I think the battle is worth it. You have received some very good advise on the board and I am sure Ed will do fine.

Marie - finding out you have a recurrence is never easy, but it is something we always have to face. Pls Ed, stay strong and become empowered over this and you will be the winner.

Marie how are you doing?

[Melissa]

I think I remember you saying you need to be adopted... The truth is we need to be adopted by you!!! You are extremely strong and you're my hero. I'll be praying for you both.