Trying to keep going

HootieGirl

Hi ladies!

Wish I had better news to write y'all. I am out of the hospital which is one good thing, but am still in so much pain. That was without a doubt the toughest surgery I have ever had. I've never been in so much pain in my life. Things are getting easier day by day though. I just have to remember to be patient. The unfortunate news is that I saw my radiation oncologist today. I had a ct scan done for my preop so that my neuro surgeons could plan the surgery and my radiation oncologist looked at it today. I was told that I have 7 tumors in both of my lungs and there aren't really any treatment options. The only option is to do chemotherapy, but since my tumor has never responded to chemo, its a less than 5% chance that it will do anything.

I'm trying to decide whether I should do anything or just live out the rest of my time enjoying my friends and family and enjoying life. Quality of life has always been so important to me. I don't know if I can go through losing my hair again because I just felt so ugly and so not 'me' in addition to being so sick and feeling terrible. Back in March I was told that my disease had become terminal, but I refused to accept that and decided that there was no way I was going to lose this fight. Now that it has spread to my lungs, I am faced with the reality that this really is terminal. I feel so incredibly hopeless. I don't know how I'm supposed to come to terms with the fact that I'm 21 and I'm dying and there is nothing I can do about it. I know people say miracles happen all the time and I am one of those believers, but at the end of the day I have to be honest with myself and accept the fact that sometimes there isn't always a happy ending. I have quite a bit of time to decide about chemo since my spine has to be completely healed before I begin any kind of treatments.

I just don't really know how you go on living your life knowing that you're going to die. This is so incredibly difficult. I hate the hurt I am causing my friends and family. I hate that every time I feel like things are starting to turn around, something bad happens. I wish I understood God's master plan and why all of this is happening. I am just so devastated. Please continue to pray because I know that regardless of treatments, prayer is one thing that always works. I will continue to keep you ladies in my thoughts and prayers. Thanks for all of your kindness and support.

Kat

salls41

I adore you Kat
O Kat I am so sorry you are dealing with this. What a special special young woman you are. You have my thoughts and prayers. No one knows what they would feel faced with what you have been faced with. You are so incredibly strong! As you said you have time to decide and who knows what may happen between now and that time! You ask how do you live life knowing you are going to die? We are all going to die Kat. We all know we are going to die... no one lives forever. Don't dwell on when you will die, dwell only on the day you have. No one is promised tomorrow..with or without cancer. You have all of us here to listen to you when you need to vent, when you need to rejoice..You are so loved..I hope you feel my arms around you now. God Bless!
Sandy

disneyfan2008

I am thinking of you...so
I am thinking of you...so sorry going through this...

I heard once "GUILT' or feeling bad is if you intentially hurt someone...when you have no control there should be not guilt. So dont' feel guilt for hurting those who love you...I will keep you in my thoughts

Denise

Clementine_P

Kat
This is really incredibly unfair (and that may be the understatement of the year). I can't think of words to adequately express my feelings. You are a bright star and a wonderful young lady. I wish some sort of unexpected miracle happens and you go back into remission immediately. I will continue to hope for nothing but this miracle for you. You have really dealt with this situation with nothing but grace and poise. We could all take a page out of your book in this regard. Whatever decision you end up making regarding your treatment will be the right decision for you.

My thoughts are with you,
Clementine

Ritzy

salls41 said:

I adore you Kat
O Kat I am so sorry you are dealing with this. What a special special young woman you are. You have my thoughts and prayers. No one knows what they would feel faced with what you have been faced with. You are so incredibly strong! As you said you have time to decide and who knows what may happen between now and that time! You ask how do you live life knowing you are going to die? We are all going to die Kat. We all know we are going to die... no one lives forever. Don't dwell on when you will die, dwell only on the day you have. No one is promised tomorrow..with or without cancer. You have all of us here to listen to you when you need to vent, when you need to rejoice..You are so loved..I hope you feel my arms around you now. God Bless!
Sandy

I

double posted, so, that means double my prayers for you!

Ritzy

salls41 said:

I adore you Kat
O Kat I am so sorry you are dealing with this. What a special special young woman you are. You have my thoughts and prayers. No one knows what they would feel faced with what you have been faced with. You are so incredibly strong! As you said you have time to decide and who knows what may happen between now and that time! You ask how do you live life knowing you are going to die? We are all going to die Kat. We all know we are going to die... no one lives forever. Don't dwell on when you will die, dwell only on the day you have. No one is promised tomorrow..with or without cancer. You have all of us here to listen to you when you need to vent, when you need to rejoice..You are so loved..I hope you feel my arms around you now. God Bless!
Sandy

Kat
It is hard to even know what to write to you. This is not the news I had prayed to read from you. You have always been an inspiration to all of us. You are so young, so amazing, such a fighter! Reading your post just breaks my heart and it is just not fair, not at all.

I will be praying for a miracle Kat, a miracle for you. You have to keep fighting, you have to continue to live your life to the fullest. That is you! That is what you, alone, have taught each and every one of us. If we all could just be a little like you, we would all be better pink sisters, women, human beings. I don't think you know how much you've touched all of our lives Kat.

We are all here for you! Please post as often as you need to and please keep us updated.

Love you Kat and I am praying as hard as I can,


Sue

camul

Kat
I will keep praying for you and that miracle.

Hugs,
Carol

DebbyM

Clementine_P said:

Kat
This is really incredibly unfair (and that may be the understatement of the year). I can't think of words to adequately express my feelings. You are a bright star and a wonderful young lady. I wish some sort of unexpected miracle happens and you go back into remission immediately. I will continue to hope for nothing but this miracle for you. You have really dealt with this situation with nothing but grace and poise. We could all take a page out of your book in this regard. Whatever decision you end up making regarding your treatment will be the right decision for you.

My thoughts are with you,
Clementine

You've got everything and
You've got everything and anything that you need from me. Prayers, hope, support, love and lots of hugs Kat!


Positive thoughts and prayers,


Debby

heaven1021

Sweet Kat
I hate that you are going through this. I contiuously keep you in my prayers and think about you often. I dont post much but i want you to know, I have never in my life met a young woman as wonderful and couragous as you. I often hear from a lot of young girls that often tell me they want to be like me when they grow up, with this being said I so want to be like you when I grow up and I'm 55 years old. BIG BIG HUGS TO YOU... Keep it going.

Megan M

disneyfan2008 said:

I am thinking of you...so
I am thinking of you...so sorry going through this...

I heard once "GUILT' or feeling bad is if you intentially hurt someone...when you have no control there should be not guilt. So dont' feel guilt for hurting those who love you...I will keep you in my thoughts

Denise

I will have to post more to
I will have to post more to you later Kat as it is hard to type thru my tears...


xo

MAJW

salls41 said:

I adore you Kat
O Kat I am so sorry you are dealing with this. What a special special young woman you are. You have my thoughts and prayers. No one knows what they would feel faced with what you have been faced with. You are so incredibly strong! As you said you have time to decide and who knows what may happen between now and that time! You ask how do you live life knowing you are going to die? We are all going to die Kat. We all know we are going to die... no one lives forever. Don't dwell on when you will die, dwell only on the day you have. No one is promised tomorrow..with or without cancer. You have all of us here to listen to you when you need to vent, when you need to rejoice..You are so loved..I hope you feel my arms around you now. God Bless!
Sandy

Kat....
All of this sucks big time! But please don't lose hope.....take and enjoy each and every day...and do what you have to do to get through the day...or the hour...hopefully the pain will lesson, sooner rather than later..it's hard when pain colors our thinking....and makes it hard to make decisions when in pain....you may want to rethink chemo as it could make you stable and stable is a good thing....I understand the not wanting to lose your hair again...I'm bald again....but it's a small price to pay...you're very dear to all of us....

I wish you the best and prayers for you...
Hugs, Nancy

SIROD

Hardest Decision
Dear Kat,

I was like everyone else so sorry to learn how painful your surgery was and the extent of your mets.

I do know from my long years reading forums that everyone who does have metastatic breast cancer comes to the day that they have to make a choice between on going treatments that aren't working or find the joy with quality of life in the time that they have left.

One lady whose blog I read for many years was Amber Chase. She posted on another board. Amber was 31 when she died was married with 5 children. Her cancer was inflammatory breast cancer, a very aggressive one, especially in younger women. I am going to post the page where Amber and her husband made the decision to do palliative care by using hospice.

Copy and paste:

http://amberchase.weebly.com/1/archives/06-2009/1.html

This will give you Amber's journey on a blog should you want to read it. A courageous woman just like you who went through so much in hopes to live longer. Like you she had so much of life ahead of her.

I hope it helps you.

My very best to you in one of life's most difficult decision.

Doris

Ctine70

Kat
You will be in my thought and prayers. Please don't give up hope, have faith miracles do happened
You are an inspiration to all of us
Stay strong
Hugs Christine

mom62

Kat
It's good to hear from you after your back surgery. I'm sorry this has not concluded with good news for you. Hardships in life are never easy, even for us older folks. My only suggestion to you is to remember you are living with cancer. It may be terminal but to what time end we don't know. I say choose life and live it to the fullest, take charge of treatment you want. Make sure it goes with your plan for your quality of life. I agree you should not have to be thinking about any of this. I will continue to pray for a cure for you. You are a free spirit full of life and you should not stop living it because of your diagnosis. If I could take all your pain away and put it on me I would, honestly. You are a beautiful person inside and out and deserve to live a long healthy life. Praying for you.

((hugs)
Terry

lintx

mom62 said:

Kat
It's good to hear from you after your back surgery. I'm sorry this has not concluded with good news for you. Hardships in life are never easy, even for us older folks. My only suggestion to you is to remember you are living with cancer. It may be terminal but to what time end we don't know. I say choose life and live it to the fullest, take charge of treatment you want. Make sure it goes with your plan for your quality of life. I agree you should not have to be thinking about any of this. I will continue to pray for a cure for you. You are a free spirit full of life and you should not stop living it because of your diagnosis. If I could take all your pain away and put it on me I would, honestly. You are a beautiful person inside and out and deserve to live a long healthy life. Praying for you.

((hugs)
Terry

Kat
It breaks my heart to read your story and to know your young age. I'm praying for you and the right decision, only you can make. Yes, you do have time to think, as healing takes place from the recent surgery. Do it wisely. Much Love to you, Linda

CypressCynthia

Oh Kat, my heart is breaking
Oh Kat, my heart is breaking tonight. I can only imagine how hard this is for you. Because I am stage 4, I have thought about it alot. I know, for me, I would not hesitate to call hospice. It doesn't even mean, to me, that you have given up. It means that you want to have the very best pain management and comfort care out there, so you can live every last day to the hilt.

I may have mentioned this before, but Danny's grandmother had a rough end in the hospital after receiving surgery that she could never possibly heal from. I won't go there, but her daughter, Danny's aunt, decided she would never have that happen to her.

Years later, when she was dying from terminal colon cancer, she died at home with hospice involved. She was on lots of drugs, back happy. We saw her right before she died and we had such a lovely time with her and she seemed comfortable and at peace.

That is how I want to go, when it is time. Now only you know when it is time and, whatever you decide, I am here for you. I admire your spunk, your unselfishness and your courage. I am praying for you and sending big (((hugs))).

ladyg

Kat
I am really sad to hear all that is going on with you. Someone your age should not have to be dealing with all of this. Please try not to give up. Live your life to the fullest every day. I will keep you in my thoughts and send out positive energy to help you through the pain.

Hugs,
Georgia

MsGebby

Prayers do help and this one is for you

Heavenly Father, I thank you for loving me. I thank you for sending your Son, Our Lord Jesus Christ, to the world to save and to set me free. I trust in your power and grace that sustain and restore me. Loving Father, touch me now with your healing hands, for I believe that your will is for me to be well in mind, body, soul and spirit.

Cover me with the most precious blood of your Son, our Lord Jesus Christ from the top of my head to the soles of my feet. Cast out anything that should not be in me. Root out any unhealthy and abnormal cells. Open any blocked arteries or veins and rebuild and replenish any damaged areas.

Remove all inflammation and cleanse any infection by the power of Jesus' precious blood. Let the fire of your healing love pass through my entire body to heal and make new any diseased areas so that my body will function the way you created it to function. Touch also my mind and my emotion, even the deepest recesses of my heart. Heal the hurts and pains and all the wounds that I have in my life. Saturate my entire being with your presence, love, joy, and peace and draw me ever closer to you every moment of my life.

And Father, fill me with your Holy Spirit and empower me to do your works so that my life will bring glory and honor to your holy name.

rallendorfer

MsGebby said:

Prayers do help and this one is for you

Heavenly Father, I thank you for loving me. I thank you for sending your Son, Our Lord Jesus Christ, to the world to save and to set me free. I trust in your power and grace that sustain and restore me. Loving Father, touch me now with your healing hands, for I believe that your will is for me to be well in mind, body, soul and spirit.

Cover me with the most precious blood of your Son, our Lord Jesus Christ from the top of my head to the soles of my feet. Cast out anything that should not be in me. Root out any unhealthy and abnormal cells. Open any blocked arteries or veins and rebuild and replenish any damaged areas.

Remove all inflammation and cleanse any infection by the power of Jesus' precious blood. Let the fire of your healing love pass through my entire body to heal and make new any diseased areas so that my body will function the way you created it to function. Touch also my mind and my emotion, even the deepest recesses of my heart. Heal the hurts and pains and all the wounds that I have in my life. Saturate my entire being with your presence, love, joy, and peace and draw me ever closer to you every moment of my life.

And Father, fill me with your Holy Spirit and empower me to do your works so that my life will bring glory and honor to your holy name.

I felt that prayer too.
Amen

sea60

Even as you write these
difficult words, there is positivity in the tone of your post. You're just that way. You exude such a positive energy. You are one tough cookie and despite this disease, you are blessed beyong measure. It gives me joy that you know the Lord. I believe He surrounds you and is with you every moment. Many questions are never answered in life. But faith must endure.

Praying for you.

Hugs,

Sylvia

P.S. - Amen MsGebby! That is beautiful.

New Flower

Kat you are in my thoughts and prayers too
I am very sorry for this hardship. You have been an inspiration to many, including myself. Please do not loose hope. I had my PET/CT on Tuesday and seeing my doc tomorrow
In June my PET showed 8 bone lesions. I am hopeful.

Kat,
please read this post
http://csn.cancer.org/node/242456
There is no right and wrong choices in this fight. Not all Chemo drugs for stage IV cancer cause hair loss and other awful SE. The variety of chemo for stage IV much lager, and some new drugs are easier.
Hugs
New Flower