Starting WBR tomorrow...nervous & scared

[jml]

Hi My Friends~
So I start the 1st of my 15 cycles of WBR to zap these 8 lesions on my brain - 1 of them on my brainstem.
I'm nervous and scared.
I was just fine earlier today...I was resolute, confident and having a great day, enjoying lunch with friends, an unbelievably beautiful sunny day here in Atlanta.
Then I realized that I don't really know how this WBR stuff works...they made a mask for me on Friday, but I didn't ask many questions about the actual radiation, just asked about side effects, cognitive deficits, fatigue, etc.
And now after reading posts from folks on another site, I'm scared.
Not scared of the 15 rounds, but of how bad the fatigue may be, how long the fatigue will last, how much assistance will I need as I recuperate?
What if it doesn't work? What about the disease in the rest of my body...?
Oh I can feel the snowball bearing down on me and hate this feeling.
I believe that knowledge is power, and I so need to hear your wisdom my friends.

Keeping the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms. Suggested tx – WBR x 15 rounds
1/25/12 – Start WBR

[chrisy]

Jessica,
I am not an expert in WBR, but as you know, I do have experience with feeling strong, confident and at peace one moment...immediately prior to completely melting down. One year I thought it would be a fabulous idea to give up fear for Lent.. Of course, that backfired badly and all I could think of was the fear! I wish I cold give you a big hug right now.
One thing I always try to remember at times like this is to BREATHE. Repeat. Repeat again....

As i think it was Karen's dad would say, "you're gonna be good". And so you are.

I'll be thinking of you tomorrow

Much love, my friend

[ElaineM]

I agree with Chrisy. Breathe !!!!!!!!
I know nothing about radiation, but I would say to make sure you get your concerns addressed and your questions answered before you start the actual radiation. Tomorrow might be a good time to do that.
Take very good care of yourself during the radiation.
Pamper yourself whenever you can.
You deserve it !!!
Keeping my fingers crossed for your and a hug goes out to you from me.

[BonnieR]

Well, your first mistake was reading on other boards!!
Seriously, I can imagine the anxiety you must be feeling right now, the anticipation. Usually that is worse than the actual event.
The first day of any new thing is full of uncertainty. I remember that the cancer center psychologist told me that as soon as my first treatment started it would feel "like a balloon had been pricked and all the anxiety poured out" Once the ball is rolling, it was better.
Reading your signature, you have been through ALOT. And you DID get through it all. You are an amazing person. You did it one day at a time. One proceedure at a time. And you will do it again. We will be in the room with you. Keep the faith

[Paty]

Jessica,
Just put your life in God hands an he will do. Love you dear and send you a big and strong hug. I will be prayingfor you first thing tomorrow morning.

[StephN]

Those suckahs are going to start dying tomorrow. Hold that thought.

[Pray]

Gods blessings Steph, I also will be hoping and praying that all will go well for you.Your Friend,Nancy

[radiant]

Hi Jessica!

U are a Hero as well! I would be nervous as
well - totally realistic concern. I know WBR
has worked for many - holding on tight
to that thought for you.

Hugs,

Kim

[KsGal]

I hope everything went well today. Sending prayers and positive energy...

[Delaney]

Jessica, always close your eyes BEFORE they put the mask on and just visualise those pesky brain lesions being zapped to dust by the radiation. You will get through the fatigue, it takes a while before you feel tired. So for the first week you might feel 'normal'. Everyone is different and reacts differently. I wish you well.

[michka]

Jessica,I wish it was already over but think each time of the "stupid mets" being blasted. I hope you will not feel too tired. Hugs, hugs, hugs. Michka

[fullofbeans]

Jessica, from me too hugs hugs hugs hugs. No life is not fair and living in fear and sometimes pain is so hard you have been a trooper here I have nothing butr admiration for you. All you can try to do I think is to let go of the fear what ever will happen will happen whether you are in fear or not. Yes you will be radiated and its really horrible but others have been ok through it and I hope you will be one of them, in some stupid ways there is nothing else to do. The fear is telling you to avoid more treatments and WBR is scarry but all you can do is visualise these tumours going, we love you and pray/send good vibes to you.

[Laurel]

Jessica,

My prayers are for you to smack those invaders down permanently! Your fear is only a natural reaction to the UNKNOWN and that really cannot be argued away. The knowledge you now have will allow you to pray against those side effects. In other words, you know what to ask for, so ask away and if you share with us your worst fears we too can pray those symptoms never manifest from your treatment. Tell us what to pray for and we will pray specifically, so for starters I will pray you suffer only mild fatigue or even better, ZERO fatigue! Also, I am asking that in addition to great success this treatment causes ZERO neurological side effects and that you feel well enough to manage your care and affairs independently.

You are one tough cookie, but even the bravest quake at the thought of WBR. I know you are up to the challenge however daunting. Let us know how the mask fitting goes and when you get your first round of zaps.

Sending love and prayers you way.

[Ellie F]

Hi Jessica
Just wanted to say I regularly sit next to a lady who had WBR 3 years ago and is doing great!

Take care and don't put yourself under pressure to be well before your body has time to heal.
Hugs
Ellie

[Debbie L.]

No wisdom for you, Jessica (I think you already have a sufficient quantity of that, anyway).

But lots of good thoughts. And a quick comment that while it can be scary to experience times of that snowball-of-fear, it also NORMAL to do so. And probably necessary. It's a rhythm, right? The snowball comes, the snowball rolls and grows a bit, the snowball moves on. It's my belief that when we don't let the snowball happen, it doesn't go away -- it hides and emerges later as an avalanche. It seems to me like it's places like this list that really help during hard times, because we can say we're scared and we hate it. And many people will understand, empathize, and just acknowledge that, without trying to talk us out of it -- knowing that it's normal, and will pass.

Good thoughts and prayers to you, please let us know how it's going.
Debbie Laxague

[schoolteacher]

Thinking and praying for you, Jessica.

Amelia

[mmoons]

Jessica-

Praying you feel okay...and visualizing your cancer being pulverized!

Prayer, hugs and healing thoughts coming your way.

Maureen

[alicem]

Thinking of you keeping you in my prayers.

[tricia keegan]

Jessica sending positive vibes to you today and keeping you in my prayers ((((hugs))))

[bejuce]

Hi Jessica,

I'm adding my prayers and healing thoughts to the list. Take each day/minute at a time, be gentle to yourself, and act like a Jedi with the force helping the radiation kill those invaders once and from all.

May the force be with you!

Marcia