Talk me down off of the ledge please.

Carolyns · 03-27-2007, 01:50 PM

Hi All,

I have been cruising along since diagnosed with stage 4 last March 06.

The stage 4 portion of the journey started with C-6 spinal replacement surgery and Femara for treatment (Lapatinib trial 50/50 chance still uncertain as to if I got Lapatinib with Femara). Had progression to liver and switched to Gemzar and Herceptin for 6 months with one month off for radiation to spinal area where I had surgery. I had good results with Gemzar and Herceptin and switched to Faslodex and Herceptin in late December.

Well it is scan time next week and last week I started with a slight headache. I saw my doctor today and asked to add a brain scan (last one was June06) to the MRIs, CT, and Bone scan and she said fine. She also said that my markers have begun to rise and she wants to get a look at those scans...all scheduled for next week. She said that it was the first time that the markers started climbing but not to worry too much.

Okay, since my appointment I have not been able to quit crying / screaming / praying / begging / repeat cycle. I don't know how I can do this. I am so scared. I am having a huge pitty party for myself. I was able to fake my little boy out. He is 8 and he came home and I held it together until he went out again. I work with a yoga / visualization person and she comes tonight for my session.

Sorry to dump here but I thought that if I started typing I could quit crying. Do tears ruin key boards?

Thanks for listening.

Carolyn

saleboat · 03-27-2007, 02:02 PM

Carolyn--

I wish I could do something to make you feel better. I don't know what it is like to walk in your shoes and face the challenges that you do, but I wanted you to know that I read your post. I hope your yoga guide helps you find some peace tonight. Please don't focus on your headache-- there are many reasons for it, including the stress of scans and lack of sleep.

Good luck tonight.

Jen

Belinda · 03-27-2007, 02:05 PM

Carolyn - deep breathing, remember that markers can go up and down for no reason, you'll have the results soon enough. Will be thinking of you in the meantime. Bx

Mary Anne in TX · 03-27-2007, 02:46 PM

Carolyn, I don't know if the markers are just jumping on their own or mean something. But I do know that your little boy has a very honest mom who just needs a massive dose of hugs right now. I'd be totally crazy also. And while my boys are grown (28 and 30), my little granddaughter that lives here is 8. When I have those unknown times, I just load up on tons of hugs and pop corn! Every time your mind tries to travel too far down the road into the future, draw it back to right now. Today is all you can deal with now. Get those hugs and believe that you can do this one day at a time! Lots of love,

mary anne

JerseyGirl · 03-27-2007, 02:47 PM

Carolyn
I was dx stage IV last March too; I know how hard it is too keep it from your son. There's times I just want to burst into tears in front of him and sob away, but I too, hold it together until he won't know.
I'll be praying for your scans. I had a 3 week headache in January and thankfully, an MRI came back clear. My markers are normal, so my onc wants to wait until May for more scans; the last set was Dec 26th. I'd like to have them weekly at this point!
I know you're petrified and you have a right to be. But don't forget, the scans may be clear. There's just as much a chance of them being clear as not. And if they're not, you caught it and can begin treating it. But you know as cancer patients we'll never stop imaging that it's coursing thru our bodies and we could even have things like ankle cancer; that's just the way we are! So, fists up and be sure and let us know how it goes next week. Have a good cry now and then; I think it helps to clear us out!
(((hugs)))
Julie

Mary Jo · 03-27-2007, 02:53 PM

Hi Carolyn,

Not much I can offer that these others haven't said but I can offer a cyber hug and I will do just that. I'm sorry you have to go through this. I'm sorry anyone has too.

Hugs, love and heartfelt care I send,

Mary Jo

lexigirl · 03-27-2007, 03:47 PM

Carolyns,

I don't know very much about the tumor markers as my onc doesn't do them. I am hopeful that you will receive good news on your scans. There are good txs out there to get you back to NED if something shows up.

I have kids also and the thought of not seeing them grow up makes me sick. Cry all you want. This is serious stuff. But, do not feel hopeless. There is always hope. Please know that you are in my prayers.

Hugs,
Lexi

skeetur · 03-27-2007, 03:49 PM

A very, very heartfelt hug to you.

Kathy

Sherryg683 · 03-27-2007, 04:04 PM

Hi Carolyn, I am Stage IV also with lung mets..been NED for the last year. Believe me, I know how you feel. I have an 18 year old son and 8 year old daughter that I have to be here for. Even being in remission, I still have terrible crying spells. I usually try to go somewhere where I can't be seen or do it while I bathe. The fear of this is numbing and I dont know what to tell you to make you feel better, just take deep breaths and pray. I usually will cry so hard that I wear myself out and then I feel better. My brother is going through the last stages of melanoma that has returned to his liver so I am having to watch what this is doing to him, it's so hard. I don't know much about tumor markers, my Oncologist does scans on me every 3 months. As far as the headaches, I went through spells of terrible headaches that would last for a month and longer, they were awful. All my brain MRI's have been clean. I just figure they were from the Herceptin or stress. Please try to stay calm (easier said than done) until you finish your scans and get your results. It always helps me to remind myself that this is totally out of our hands, it's in Gods hands. All my worrying, crying and fear isn't going to make a bit of difference. Lay it at his feet and pray that he will take care of it. Other than that, you may want to get on some sort of anxiety pill such as Xanax, it works wonders for me when I have anxiety attacks. Well, I went from the Lord to nerve pills..lol. sherryg683

LAURIE · 03-27-2007, 04:19 PM

WE ARE ALL HERE FOR YOU, we can all be scared together, share news together, laugh together and always be here together.

Mary Jo · 03-27-2007, 04:25 PM

Oh Sherry............Hahahahahahaha! I just had to post back to you to tell you how your post brought a smile to my face. The part where you said "I went from the Lord to nerve pills" Hahahaha! I'm still smiling.

Hugs -

Mary Jo

DonnaD · 03-27-2007, 05:11 PM

Carolyn,
I am so sorry you have to go through this waiting. It is so hard. Many will be praying for you. Enjoy your delightful 8 year old son. I wish I could give you a hug.
Donna

Joy · 03-27-2007, 05:24 PM

to everyone's thoughts for you. I know this disease is hard on anyone who has it and their loved ones-it is. I kinda think, though, for those of us with these babes it is a little extra torturous. We have our children to raise them-period. And the thought of anything threatening that is sickening. You have my empathy.

You also have my thoughts and prayers that you will get all the tests necessary, that all will be good and there will be sighs of relief. Love to you.

Lolly · 03-27-2007, 05:59 PM

Carolyn, no need to apologize for venting, we all know this place is our safety valve. You are not alone, and I just want you to know that. Give your boy a big hug for me.

<3 Lolly

Jean · 03-27-2007, 07:28 PM

Dear Carolyn,

Please remember that many many onc. do not use the markers since
they often give false readings. I am praying for you that is what is
going on with your markers.

Sending you great wishes for a great scan results!

Hugs,
Jean

hutchibk · 03-27-2007, 07:32 PM

Carolyn - ditto to what everyone here has already said. I have been on the ledge a time or two lately and I understand where you are right now. I am getting my brain MRI tomorrow just to look and make sure all is clear and to measure the bone spot that is at the top of my cervical spine (C2) just to make sure it is still stable. Today I had to go to the Retina Specialist to have an Ultrasound on my eye (!!) to make sure that the small spot my optometrist saw 2 weeks ago wasn't mets... it would be rare, but better safe than sorry. Talk about weird. The last 2 weeks I have been a basket case leading up to today, convincing myself that I have a tumor in my eye and will be blind within the year. It's crazy how our brains can lead us to the ledge like that. It turned out to be a freckle (!!) they think (in the retina?) but will keep an eye on it due to my history...

Just let yourself cry a little (or a lot) every day to relieve the pressure until you get all the tests done, know the results and find out whether there is a new plan of action. Once you know what the plan is (if necessary) you will feel alot better. It's the not knowing that is so painful!

Bev · 03-27-2007, 07:55 PM

More hugs and prayers. Hoping that headache is just stress, vision problems, allergies etc. Keep us posted. Bev

Carolyns · 03-28-2007, 09:21 AM

Thanks for all of your kind words and some funny ones (Sherry). I used all of them to get me through to today. Oh yeah, God and drugs too (Sherry). I called in sick today and am headed to my Son's Field day at school after I finish my 3rd round of crying jag. Showering and putting on my happy face.

Your postings help so much that I can't tell you. It is like I am sitting alone and no one else can understand how this feels except for you. I find myself reading the responses over and over to gain strength through my tears.

Thanks again and god bless us all.

Love, Peace and Hope,

Carolyn

03-28-2007, 09:38 AM

Carolyns,

I'm in marker hell myself today and can sympathize with your great anxiety. I asked to have my Bayer test run last week (six months since last) and called today to ask for result (I've been tossing and turning in my sleep since I decided to ask for the test). My oncologist's nurse said 'one minute' and left me sitting on the phone for quite a while. Then she told me the result was still "pending." I didn't believe her, was sure she was lying, that my marker had gone up. I then called my chemo nurse (we get along great) and she looked it up and sure enough it's says "pending." Of course, now I'm wondering why it could be pending after eight days and wonder if I hit some stratospheric number and the lab is rerunning the test.

Yet, I've been told by my oncologist many times that the marker numbers are highly unreliable--any type of infection can send them up or a benign condition that needs to be addressed but is not cancer, perhaps even stress. And the headache can be anything, including stress since you knew you were due for a scan. Or it might even be something so simple as the need for glasses or a stronger lens. I know it's hard to do, but try not to think about it! Better said than done, I know!

RobinP · 03-28-2007, 09:47 AM

I feel for you, Carolyn, and I hope all turns out well with your tests. You're not alone with the worry syndrome; believe me, I worry over every ache and pain. I know I should be stronger in God, but it is all so scary at times. Yes, Sherry, I too have taken antianxiety meds-- not now, but in the past.