Next step in my journey

Gabe N Abby Mom

First, many many thanks to all of you for caring and for your support and humor. You make it much easier to take the necessary steps and get through this journey. Friday was a long hard day, and having you with me truly made a difference.

The hardest part was hearing the words "stage four metastatic breast cancer". Although I knew in my heart of hearts this was case, hearing my onc say it aloud made it final. That little part of me that hoped it might not be, that part that was still in denial, died.

I am now taking Xeloda, two weeks on then one week off. I started yesterday...those first pills were pretty hard to swallow. There was something emotional for me (I haven't figured out the right words yet) about giving myself the chemo, instead of an IV injection given to me by someone else. I am feeling a little more settled about it now, and as I take the pills I think about those pills building a fence around the cancer cells to contain and kill them.

As for surgically removing the two lymph nodes by my lung, that won't be happening. Even the least invasive surgical option is too invasive...any benefit gained by removing the lymph nodes would be lost in time off Xeloda while recovering from the surgery. As the thoracic surgeon said, recovery from a needle poking a lymph node is a couple days...recovery from removing lymph nodes is two to six weeks...weeks that the chemo could be working on your entire body.

So today, I will use my will power and push cancer aside, I will not dwell on the cancer. Instead I choose to enjoy today with my friends and family. I wish the same for each of you.

Hugs,

Linda

roseann4

Great attitude in a difficult time
can be a challenge but it sounds like you're doing it. I'm sorry to hear your new diagnosis but as scary as it is it is not without hope. New drugs and new information are being uncovered all the time. The longer we live the better the chances that they will find a cure in our lifetimes. For all of us every day is a gift. Hugs and prayers are coming your way.

Roseann

New Flower

Linda I am very sorry and impressed at the same time
Linda
I am very sorry and impressed at the same time by your grace and positive attitude. Please know we are always here for you providing support and tips for managing side effects. I hope that the new medication will have minimal side effects and effective against cancer.
Have a nice day
Love and hugs

MAJW

New Flower said:

Linda I am very sorry and impressed at the same time
Linda
I am very sorry and impressed at the same time by your grace and positive attitude. Please know we are always here for you providing support and tips for managing side effects. I hope that the new medication will have minimal side effects and effective against cancer.
Have a nice day
Love and hugs

Heard the same words....
And I am sorry, Linda that you have heard them too....

I, too, am on Xeloda....I took it 5 days a week while having rads 5 days a week...the Xeloda intensifies the effects of the radiation, said my onc.......a fellow pink sister has just completed the same regiment....I started my UPPED dosage this morning...now taking 3 (1500 mg ) in the morning and 3 (1500 mg) in the evening...so 3000 mg total... I am on7 days and off 7 days.. During rads it was 2 in the morning and 2 in the evening....I understand taking chemo " at home" but better that than IV again...I had to laugh at the instructions...." use safety glasses and gloves"...yeah and I'm gonna swallow this!......I have to say, I have tolerated it very well...I take my anti nausea pill(Zofran) ...wait 30 minutes, then eat, then pop the pills....make sure you eat first....my Oncologist and oncology pharmacist said to pay particular attention to my hands and feet...a major se CAN be the hand and foot syndrome...oh joy! I put AQUAPHOR on my feet in the evening after my shower and until I go to bed socks or footies... I try to keep lotion on my hands....I am noticing some slight redness on my palms...so I guess it'll be gloves in the evening, too....lol

I was told the same thing about surgical removal of the nodes...I have two large clavicle nodes and elsewhere....but they have shrunk big time since I just finished last week 25 rads...I will continue the Xeloda for 8 weeks and then scans to see if it's working...more of the "waiting game"...

I so understand hearing stage IV metastatic bc...I about went to pieces....my oncologist "got onto me"....he said it's a number...forget the number...he said they now consider this a chronic disease, like any other chronic disease......why that made me feel better, I have no clue...but I know I will continue some type of treatment from now on....there is a clinical trial for TESETAXEL, phase II getting ready for phase III... I took two cycles of it...didn't work for me, but it is showing great promise for other women with stage IV...my oncologist is in on this...it is out of Sloan Kettering in New York....I am in North Carolina...

Wish I had some magical words to make you feel better, but I don't...all I can say is hang in there...I'm with you all the way! As are we all...
Keep us posted...you know we care...
Hugs, Nancy

camul

Linda
Just hearing stage IV, even though I already knew it, knocked my socks off. After my appointment that day, (my sister was with me from Seattle), we went to a get together with some really good friends, and I got totally toasted. Felt really good until I woke up in the morning...... but then I was ready to move on and do what ever was necessary.

Sounds like you are handling it well, considering. Will pray that the chemo will shrink the lymph nodes and allow it to stay chronic.

Prayers, hugs and everything good to you.

Carol

Lynn Smith

camul said:

Linda
Just hearing stage IV, even though I already knew it, knocked my socks off. After my appointment that day, (my sister was with me from Seattle), we went to a get together with some really good friends, and I got totally toasted. Felt really good until I woke up in the morning...... but then I was ready to move on and do what ever was necessary.

Sounds like you are handling it well, considering. Will pray that the chemo will shrink the lymph nodes and allow it to stay chronic.

Prayers, hugs and everything good to you.

Carol

Stage IV is scary
Stage IV is scary but a friend and classmate was dx with that over 12 years ago. If I remember it was in 15 lymph nodes.The cancer came back this year and she passed.That dx was many years ago when they didn't have as much knowledge.Today there is much more and they are learning and coming out with new things all the time. Chance today for us are much better.

I know it is rough and you sound like you have come to realize it will be a battle.But hearing what your doctor said makes sense.Get those meds in you because surgery would stall things.I hear all the time people have tumors and then gone.Miracles happen.Believe in them.

Prayers to you and your family. Wanting nothing more than the best for you and all others facing any cancer or life challenging disease or injury.

Have a wonderful time with family and friends.

Lynn Smith

carkris

Lynn Smith said:

Stage IV is scary
Stage IV is scary but a friend and classmate was dx with that over 12 years ago. If I remember it was in 15 lymph nodes.The cancer came back this year and she passed.That dx was many years ago when they didn't have as much knowledge.Today there is much more and they are learning and coming out with new things all the time. Chance today for us are much better.

I know it is rough and you sound like you have come to realize it will be a battle.But hearing what your doctor said makes sense.Get those meds in you because surgery would stall things.I hear all the time people have tumors and then gone.Miracles happen.Believe in them.

Prayers to you and your family. Wanting nothing more than the best for you and all others facing any cancer or life challenging disease or injury.

Have a wonderful time with family and friends.

Lynn Smith

No way around it not the
No way around it not the news we wanted to hear. It stinks you have to deal with this. Not suprised you are dealing with with grace. so I am praying for God to give you continued grace and help you through this. Along with no s/e's and smashing the cancer cells to oblivion!! You know we are here for you!!!

Chickadee1955

carkris said:

No way around it not the
No way around it not the news we wanted to hear. It stinks you have to deal with this. Not suprised you are dealing with with grace. so I am praying for God to give you continued grace and help you through this. Along with no s/e's and smashing the cancer cells to oblivion!! You know we are here for you!!!

Linda,
I type and then
Linda,

I type and then delete, type and then delete because I just don't know what to say. I cannot believe the poised, gracious posts you write although I know you must be in an emotional spin. I will keep you in daily prayer and trust you will defeat this beast day by day for MANY, MANY years. With great affection, admiration and prayer for you and your family.

Chickadee

linpsu

so sorry
Oh Linda, I am so sorry to hear your news. But you have such a great attitude, I'm sure you will be able to handle anything that comes your way. Blessings and prayers to you. Linda

cahjah75

Linda
I admire your strength. I'm so sorry for the news you got from your onc. Your decision to stay on the chemo and not have surgery sounds like a good one. I will keep you in my thoughts and prayers.
{{hugs}} Char

poplolly

I took Xeloda during my
I took Xeloda during my radiation. Remember that a Stage 4 diagnosis doesn't mean there is nothing that can be done. I have talked with many people on these sites who had that diagnosis, and they are doing great, long-term

My prayers are with you.

Judy

dbhadra

cahjah75 said:

Linda
I admire your strength. I'm so sorry for the news you got from your onc. Your decision to stay on the chemo and not have surgery sounds like a good one. I will keep you in my thoughts and prayers.
{{hugs}} Char

Linda
I am so sorry to hear this news.

For me, the xeloda was the easiest chemo yet, and I hope that will be the case for you as well.

Can I just say how very sick and tired I am off this horrible disease????

Laura

aisling8

poplolly said:

I took Xeloda during my
I took Xeloda during my radiation. Remember that a Stage 4 diagnosis doesn't mean there is nothing that can be done. I have talked with many people on these sites who had that diagnosis, and they are doing great, long-term

My prayers are with you.

Judy

So sorry
to read your post, but, like New Flower, so impressed with your grace and dignity,

I wish there really were that magic wand to make all this go away. I send my thoughts and prayers and I'm sure you will fight with every ounce of strength you've got.

Thinking of you,

Victoria

Mitzi333

aisling8 said:

So sorry
to read your post, but, like New Flower, so impressed with your grace and dignity,

I wish there really were that magic wand to make all this go away. I send my thoughts and prayers and I'm sure you will fight with every ounce of strength you've got.

Thinking of you,

Victoria

Linda... Sorry to hear this news
My prayers are with you during this difficult time. Keep your positie attitude and the faith... God will see you through this portion of your journey.

Positive Vibes sent your way.


Hugs~
Mitzi

MyTurnNow

Linda, I, too, am impressed
Linda, I, too, am impressed with your strength and tenacity. I remember hearing those dreaded words myself just a couple of months ago...Stage IV metastatic cancer. But, I am like you and taking it one day at a time. I wish you much success with the Xeloda and hoping that we hear from you soon that the cancer is not evident. I truly believe that a positive attitude has a lot to do with our well being. Sending strength and healing (((hugs))) your way. Take care pink sister!!

VickiSam

MyTurnNow said:

Linda, I, too, am impressed
Linda, I, too, am impressed with your strength and tenacity. I remember hearing those dreaded words myself just a couple of months ago...Stage IV metastatic cancer. But, I am like you and taking it one day at a time. I wish you much success with the Xeloda and hoping that we hear from you soon that the cancer is not evident. I truly believe that a positive attitude has a lot to do with our well being. Sending strength and healing (((hugs))) your way. Take care pink sister!!

such grace ...
Linda .. I am amazed by you, and your attitude. I wish I had something to say that would make all your pain and fear go away, but I do not. May our Lord keep his hand on your during this time, providing comfort and strength to you and your extended family.

Wishing you the very best, continued health and prayers coming your way.

Strength, Courage and Hope.

Vicki Sam

Clementine_P

Very sorry
Linda, hearing Stage IV being said about you must have been incredibly upsetting and frightening. Even so you appear to be handling this with such courage and tenacity. Please try to keep in mind all the wonderful women here on this board who have persevered for decades with Stage IV. Everyday new treatments are being found and you can be the happy recipient of this. I admire your grace under difficult circumstances.

Keep fighting,
Clementine

Marsha Mulvey

Clementine_P said:

Very sorry
Linda, hearing Stage IV being said about you must have been incredibly upsetting and frightening. Even so you appear to be handling this with such courage and tenacity. Please try to keep in mind all the wonderful women here on this board who have persevered for decades with Stage IV. Everyday new treatments are being found and you can be the happy recipient of this. I admire your grace under difficult circumstances.

Keep fighting,
Clementine

Dear Linda,
Sorry to say I'm not very good with words but want to let you know I'll be thinking about you as you begin this step of the journey. Staying positive is probably not going to save any of us, but I do think it helps us along the way. What did you finally find out about the "mystery spots" (as you called them) in your liver? That's very strange that they would show up on one scan and not another. Hoping Xeloda is your magic bullet, you're taking it on the same schedule as I did, 14 days on and seven off. Are you taking anything else in combination?

Stay strong both physically and mentally, it takes both to get through. Living life one day at a time is certainly the right mind set and attitude. I'll be praying for all of us and am sending you my best wishes. Marsha

aysemari

My dear Linda
my heart goes out to you, you are such an amazing person. Your writings so eloquent and full
of compassion and inspiration. Even during you darkest hour.

All I can add is that you have my tears, my frustration, compassion but above all my admiration
for the way you handle it all.

Hope is what remains. And I am holding on, with ALL I got dear Linda.

Sending you lotsa love,
Ayse

CypressCynthia

Linda, there are few people
Linda, there are few people who I say this about that I really, truly mean it about--I just love everything about you! You have handled your illness with such grace and dignity. You are so wise and so amazing. And you often make me laugh out loud to boot.

If I can do anything to help, please PM me. And give your wonderful family a hug from me (and I know they must be wonderful if you love them).

I know you are a fighter and I am praying that the Xeloda kicks your cancer to the curb! When I had chemo years ago, I used to visualize the chemo as little Pac-Men (Or Pac-Women if you like bows) gobbling up the cancer. Hope that image helps :-). As always, you are in my prayers.

LoveBabyJesus

Dear Linda -- Not much I can
Dear Linda -- Not much I can say that some of the sisters haven't mentioned. But I want you to know I have faith in you and I will have you in my prayers to never give up, to always stay positive - no matter what you see, no matter what you hear, and to fully recover from all of this. (And so far I like your attitude).

Please continue to let us know how you're doing/feeling. As always, we're here for you, and support you.

Lots of HUGS.