Scanxiety - Brain MRI & Full Body PET tomorrow~

[jml]

Hi Friends~
I've been rather quiet on the boards lately as I've been enjoying my 3 month rendezvous with NED - my first since 2007 in this 10yr StageIV odyssey. But I check in regularly and to keep tabs on how everyone's doing.
I'm so sad for our sisters who are struggling right now and pray daily for each of us.
Tomorrow is a big day for me - Brain MRI in the morning, then immediately after that I'll see my Rad Onc and get the results, then right after that, a full body PET. I'll see my Onc tomorrow and get the PET scan results at that time.
I've been struggling for weeks now, questioning every little sensation (do I feel something in my brain? is that tickle under my sternum the nodes growing with disease? will a little peptobismal help my stromach ache and nausea? is that my liver or just gas?)and tryng to resist the urge to post here, asking for feed back or researching the internet for symptoms...
Ultimately, I know that we won't know until we KNOW, and all this worry isn't going to contribute to how effective my next treatment or any treatment will be, if I need that next treatment.
I hope and pray to God that I won't need that next treatment. But Thank God there is a next treatment, thanks to Perjecta and TDM1 just around the corner Sometimes the fear is overwhelming. Snowballing thoughts of what the next step will be if my brain &/or body are not clean... having to call my family with sad news, having to post here to you all the sad news, starting a new treatment that may or may not work, and if it doesn't, the disease growing out of control and stealing my time on this earth. The dreaded snowball.
I distract myself with little projects, and happy thoughts and plans for the future, like the next time I'll be with my family this Thanksgiving.
And then I remind myself to breathe.
Will post results as soon as I have them.

Keeping the Faith~

Jml

[Joanne S]

I was feeling just that way as you do, but couldn't put it into words. You have of way of writing it so clearly! Thanks! Sending a hug and positive thoughts your way Jml. I will keep you in my prayers.

[yanyan]

Good luck with the scan and please keep us posted of how you are doing ! Very happy to hear about your vacation with NED and may you always be on vacation :)

[Deb33]

I'm an "early girl" and lose my mind before and after my 3 month blood tests. I am told from long term survivors that the scanxiety never goes away and the best thing you can do is bring everyone into the "worry space" with you. So we will all worry with you tonight and tomorrow and will anxiously await your news that NED is still hanging out.

[NEDenise]

Jessica,
I think I have a good idea of what you're feeling.
I won't know until early November whether the gammaknife was a success, and whether anything else has popped up.

I get the "every little twinge makes me think...is it the cancer?" thing...
I never used to feel that way...
but now that it has attacked my brain, I figure why not other places too!?

It's easy to say, "Don't worry till you know",
"worrying won't keep it away",
"Don't borrow trouble"...
and I know all that.
I've given that advice too!

But, like you...the uncertainty is always there,
gnawing away at my peace of mind.

You're always in my prayers...we brain met survivors have to look out for each other :) ...

but I'll really, really be pestering the Almighty on your behalf for the next few days, my friend!

Be good to yourself
Denise

[Pray]

I too am praying very hard that you will get good results from your tests! Gods blessings to you!

[sassy]

Holding you in prayer Jessica.

[alicem]

Dear Jessica,

There's no way I can fully understand what you are going through, but your words are so eloquent and from the heart that it gives me and everyone else here some insight. Please remember that you are not going into your scans and meetings tomorrow alone. You will have all of us here at the forum with you in spirit and prayer.

Take care my friend.

~ All my best,

Alice

[StephN]

Hey Jessica! I'm coming too. And remember that I have gone through at least as many scans and brain MRIs, so will bring what I have learned about remaining steady as I lie in the machines and then wait for the results.

I have learned that my stomach lining is not something else the cancer can take!

Sending you peace and the calm of a placid lake in the mean time.

[michka]

Jessica, my thoughts are with you. I hope you can find a way to relax although I know how difficuly it can be. I'll be waiting for your next post hoping with all my heart to read NED. Michka

[Lori R]

Jessica,
So good to see your post. I am thrilled for you that you have had time with NED.

So many of us are right with you on the anxiety roller coaster. One moment you can beat it back and then the next wave comes crashing in. I wish I could make the waiting place easier for you.

Please know that there are so many that are rooting for you and will jump for joy when you report back with good news!!!

Thinking of you.....Lori

[Mandamoo]

I can relate to every single word Jessica. Though I haven't had the pleasure of spending time with NED yet I am glad he is with you. May he stay a while longer.
Sending feelings of peace and calm.

[Vicky]

Jessica~ I was wondering how you were doing- glad to hear you were living life full. You so adeptly articulated what our day to day existence can be like! Thinking of you the next couple of days and sending lots of positive light and energy your way!

[Redwolf8812]

Prayers on their way. Looking forward to some good news.

Running on faith,
Penny

[Ellie F]

Hi Jessica
Thinking,hoping and praying for good news.

Hugs
Ellie

[Paty]

Jessica,
Hoping for the best and expecting everything has been going well. Sending you hugs and love.

Paty

['lizbeth]

Jessica,

I'm right on your heels with that anxiety. Hopefully I find out the results of my pelvic ultrasound tomorrow. However - that doesn't mean I don't have cancer. It just means they didn't find it on the scan.

I wish we had a little scanner that we could use daily to scan for cancer cells - like the lottery ticket scanner that says "Sorry Not a Winner" only it would say "Awesome! No Cancer Cells Today". Maybe we can get Lani to invent it.

I wish that your worries are unfounded and you will get the all clear.

[Paula O]

Hope you get good news. We're here for you.

Paula

[KsGal]

Prayers and positive energy coming your way. ((hugs))

[alicem]

Sending positive thoughts your way Jessica!

[dawny]

My good thoughts are also with you Jessica
Dawn

[Bill]

My thoughts and prayers are with you, Jessica. You hang in there. You're a good fighter! I can tell by the way you straddled that dog and didn't get bit. He was scared of your spirit.

[Bill]

(you didn't get bit, did you? Because if you did, I'd feel bad about my last post. I can tell you're a fighter, though, to even try something like that. You're proud and full of courage.)

[pwiswell]

You summed up my own feelings so adequately. I suspect many of us on here share the same feelings and fears. I have not experienced NED since 2006 but have just started on Xeloda and Tykerb and hoping these are the drugs that will do it. You are in my prayers and many of us will be there with you tomorrow. Good luck and please let us know what you find out so we can all celebrate with you.

[karen z]

Jessica,
More and more positive thoughts.
K

[jml]

Hi Friends~
Thank you for sharing your words and feelings with me. There is definitely power in numbers and I can feel each every one of you.
I'm so heart broken about Brenda (Hutchibk) and with my scan situation I could hardly bring myself to log on, but knew I had to be back in touch with you, my sister warriors.
So, YES! NED in the HEAD! Thrilled with this news of course, but a little disappointed that the Rad Onc told me that the reason I have a bald'ish path down the center of my skull is bc the WBR can permanently destroy the hair follicle. Uh, NO, I don't recall you telling me that, Doc! I knew that I would lose my hair, but had no idea that it was potentially permanent!?!!? In the scheme of things, this is small potatoes, but I know you all understand the desire & need for the return to normalcy, which to me, includes having hair.
As for the PET of my body, it does look really good, with no other disease other than a lymph node in my chest that has increased in size (~dime) and SUV=13. Initially this was not extremely alarming to me, disappointing yes, but not particularly alarming. Especially because I have had much scarier results with much more significant disease load.
But then I realized the implications of the location of this growing node - it lies adjacent to the Superior Vena Cava, the main vein that returns blood to the heart from the upper body. If this node continues to grow, compress, obstruct the vessel, something called SVC Obstruction, the heart would not be able to withstand that. That would be very bad. There's no indication that the node is currently in contact/compressing the SVC, but my resting heart rate has quite high, WNL, but much higher than norm for me @90bpm's.
Ultimately, my docs say they're not alarmed and have scheduled an echocardiogram for Nov 1, if that's any indication how not so urgent the situation is. I think for my peace of mind I'm going to ask to have it scheduled sooner. Knowledge is Power.
In the meantime, I'll continue on my current regimen of oral Methotrexate 4 days/week, q3week Herceptin and a small change to the oral Cytoxan from daily to every other day. We're trying to give my bone marrow a chance while I stay on continuous treatment, rather than running it down then taking a 2 week chemo break. I need to be on sustained treatment like I was the first 6mos get this node knocked down. But you have to keep your body healthy enough to withstand the chemo in order for the chemo to work. Right now I would not be a candidate to change regimens, if there were any options, because my counts are so low.
I wish it were as simple as eating more spinach and a steak, as many have suggested, but 10years of chemo makes for sluggish, fatigued bone marrow:(
Right now, just trying not to let the snowball gain momentum and will continue fighting hard.
You all are a treasure to me and I ask that we all now turn our love and prayers towards Brenda.
May she always be in peace and comfort.

Keep the Faith~

Jessica

[NEDenise]

Jessica,
Thanks for posting this update. I think we all needed a little good news today...and Brenda would normally be the first to cheer.
Hugs
Denise

[alicem]

Oh Jessica, I can't begin to tell you how wonderful this news is. I've SO needed to hear this - especially because of what is going on with Brenda. I have been so worried because there was no news and even though these times are bittersweet, I am jumping for joy over your results. I know you are doing everything you can for your strength because you are your own special advocate. That is indeed the legacy of those on this forum, and those who are angels. I'm so sorry about the hair. If it means anything, you look so good In your wig, but I know how important normalcy is. I want to remind you that not only are you beautiful on the outside, you are gorgeous on the inside.

Have a wonderful weekend my friend.

{{{{{hugs}}}}}} and much love from Deep in the Heart of Texas!

~all my best, Alice

[karen z]

Hi. Very grateful for your good news.
Stay strong as I know you can.
k

[sassy]

Jessica,

Glad to hear your news, been checking. I take it as all good--hair not withstanding. Like Alice said, you look so good in your wig, but I know its not the same.

Stay strong!

[Kellennea]

That is great news!!

[Pray]

Jessica, Thank you so much for the update! Your awesome at this fight and this node is just another battle and you have this fight down pat! Gods blessings to you and you will always be in my prayers my friend.

[Paty]

Jessica,

I am glad that things are well, as Sassy says, hair not withstanding, great chance to have lot of different crazy, colored and nice wings, you are gorgeus anyhow.

Sending you my love and hugs.

[Mandamoo]

Oh Jessica - so good to hear.
Ax

['lizbeth]

Awe really, permanent hair loss? I hate that. But very happy that your head is NED.

May good health shine on your with that single enlarged node and we will all be on board with wishing good thoughts that it will shrink right down to nothing.

[KDR]

jessica,
Great news on the health front! What an inspiration you are to all!

Karen