I don't know what to do..
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HootieGirl
Member Posts: 85
Hi wonderful pink sisters!
Today has been such an incredibly difficult day. Hands down the hardest day of my entire journey. It is 3 in the morning and I can't sleep. My mind wont take a break and my eyes won't stop crying. I went home to spend the day with my family in the city and had such an amazing time, but right before I left my parents sat me down to talk to me about everything that has been going on.
It is hard to find the words to write this, but I am trying my best. I am not going to Boston anymore to see the doctors at Harvard. My physicians have talked to the experts there along with the experts at MD Anderson and the Rhabdo expert at Children's hospital in Oklahoma City. Unfortunately our options are limited. There are 2 other chemo drugs that I could get, however they are doubtful that this would work and it would just make me really sick. The other option is to do stereotatic radiation to the met spots. This would give me more time, but my cancer is terminal. There is no drug trial for this rare cancer because no one has seen it before and therefore no one knows what would be effective. Hopefully with the radiation I will have 6 months to a year left.
I am so heartbroken and this information is so difficult to process. I believe in miracles and I know that God will watch over me during this time. We are going to do everything we can and I am in no way giving up. I will continue to fight. I am going to try some homeopathic remedies as well as the radiation. It is so scary to hear the word "terminal". I don't understand why this is happening and it makes me so sad. When I got back to Tulsa tonight my mom called me and I listened to her sob for 30 minutes. It breaks my heart that my parents have to go through this. They are such incredible people and they don't deserve this. I am the youngest of 5 and the only girl. I pray that they have strength during everything. I can't help but cry thinking about all the things I feel like I am missing out on. I will never get to have kids or be married- two things I have desperately wanted since I was little. I won't get to be a nurse and help other people, or be in my friends' weddings, or become a grown up officially.
I am withdrawing from classes tomorrow and I am going to spend my time with friends and family doing the things I love. I am going to Vegas for my 21st birthday with all of my best friends and I am going to Europe this summer for 3 weeks with my parents. I love life so much that I refuse to give up or stop fighting. You girls keep me going. Your kind words, courage, and compassion means more to me than you will ever know. Thank you for everything that you all do for me and know that I am constantly praying for each and every one of you.
Kat
P.S. if you go to my profile and look at my expressions page, I uploaded some pictures from spring break as well as the picture of my tattoo!
Today has been such an incredibly difficult day. Hands down the hardest day of my entire journey. It is 3 in the morning and I can't sleep. My mind wont take a break and my eyes won't stop crying. I went home to spend the day with my family in the city and had such an amazing time, but right before I left my parents sat me down to talk to me about everything that has been going on.
It is hard to find the words to write this, but I am trying my best. I am not going to Boston anymore to see the doctors at Harvard. My physicians have talked to the experts there along with the experts at MD Anderson and the Rhabdo expert at Children's hospital in Oklahoma City. Unfortunately our options are limited. There are 2 other chemo drugs that I could get, however they are doubtful that this would work and it would just make me really sick. The other option is to do stereotatic radiation to the met spots. This would give me more time, but my cancer is terminal. There is no drug trial for this rare cancer because no one has seen it before and therefore no one knows what would be effective. Hopefully with the radiation I will have 6 months to a year left.
I am so heartbroken and this information is so difficult to process. I believe in miracles and I know that God will watch over me during this time. We are going to do everything we can and I am in no way giving up. I will continue to fight. I am going to try some homeopathic remedies as well as the radiation. It is so scary to hear the word "terminal". I don't understand why this is happening and it makes me so sad. When I got back to Tulsa tonight my mom called me and I listened to her sob for 30 minutes. It breaks my heart that my parents have to go through this. They are such incredible people and they don't deserve this. I am the youngest of 5 and the only girl. I pray that they have strength during everything. I can't help but cry thinking about all the things I feel like I am missing out on. I will never get to have kids or be married- two things I have desperately wanted since I was little. I won't get to be a nurse and help other people, or be in my friends' weddings, or become a grown up officially.
I am withdrawing from classes tomorrow and I am going to spend my time with friends and family doing the things I love. I am going to Vegas for my 21st birthday with all of my best friends and I am going to Europe this summer for 3 weeks with my parents. I love life so much that I refuse to give up or stop fighting. You girls keep me going. Your kind words, courage, and compassion means more to me than you will ever know. Thank you for everything that you all do for me and know that I am constantly praying for each and every one of you.
Kat
P.S. if you go to my profile and look at my expressions page, I uploaded some pictures from spring break as well as the picture of my tattoo!
0
Comments
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Dear God....
I am at a loss for words...nothing I can say will make this better....but I think you are doing the right thing by doing EXACTLY what YOU want to do...!!! ......Even healthy people should't put off things they want to do as all of us on this board know that life can change in the blink of an eye!
And, keep in mind there have been many people "labeled" terminal that are still here years after being told this...my sister in law is one of them....she had a very rare cancer in her breast, a sarcoma, a deadly form of cancer...it took them 3 months to identify it once it was removed...it was actually sent to Walter Reed who finally identified it as a sarcoma...the only thing they knew to do at the time was a mastectomy...no chemo no radiation...just patted her and said good luck......this was 23 YEARS ago...she was 39 and is now 62 !
Never give up hope, sweetie....as a mother I certainly can understand how difficult it is on your parents...I have a daughter...
I, too, hate what my Stage IV cancer is doing to my husband, my two grown kids and grands....it sucks big time!
Get out there and do what you want to! And know how deeply we care about you....
In my prayers
Hugs, Nancy0 -
Oh Kat, This is so unfair..
Oh Kat, This is so unfair.. Miracles do happen. When I was in Radiation there was a man there that had lung cancer. They had given him weeks to live. The only thing that would buy him some time was this Radiation. He took it. It started to shrink. By the time he was done with rads they couldn't find it any longer. So you keep fighting girl. And do all the things you want to do. Life can't pass you by if you don't stop. Have fun in Vegas, & Europe. Your always in my thoughts and prayers. Take care Darlin Kay0 -
I am so sorry-so much to
I am so sorry-so much to take in and process!
My heart goes out to you and your family...
Denise0 -
Pink sisters husbanddisneyfan2008 said:I am so sorry-so much to
I am so sorry-so much to take in and process!
My heart goes out to you and your family...
Denise
I don't have cancer. My wife is Texasgirl10. I don't know why God allows cancer to enter peoples lives.
I will pray for you and your family.0 -
Miracles do happen
Here is another survivor story: I used to work for a medical doctor. Years ago, he was diagnosed with cancer. Doctors told him he had 6 months to a year left to live. Well, 30 years later he's still here (and a medical doctor to boot)! Faith in God pulled him through. Stay in this fight. Believe in the power of prayer and miracles. Enjoy life to the fullest and keep that positive attitude of yours. You are an inspiration to all of us and we care deeply for you.
You will be in my prayers. God Bless You and all my pink sisters and brothers,
Betsy0 -
There is nothing right or fair about this...
and I can not express the depth of my outrage and sorrow. Miracles do happen, every day you hang on is one more that something new could be found that would work.
You are absolutly right to give up school and have some fun. Enjoy life!
My heart bleeds for you,
Jennifer0 -
Kat
Not the news we wanted to hear..I have been following you on these boards for a while and praying that you were doing well. I have no words of wisdom just wanted to let you know that I am thinking of you and praying for a miracle... Sometimes life really sucks....
Sending you a big hug,
Dot0 -
You Are One Strong Woman
Dear Kat,
You are a strong woman!!!! Never stop believing in miracles and never give up the fight.
You are a beautiful woman who is warm, spunky, fun loving, thoughtful, kind, and caring. You have touched our lives with your courage and positiveness. I am sure that you bring joy to everyone you meet.
I am glad to hear that you are going to do some fun things. I believe in fun things. I believe that they are the fertilizers of life. Have a grand time in Las Vegas and Europe.
Lots of Love and Lots of Hugs,
Janelle0 -
Expletive expletive expletive!
Kat, if any post was worth of several choice words yours certainly is. I can't believe how unfair life is sometimes. I don't know what the right thing for you to do is, but my gut tells me it is to enjoy every minute you have to the fullest with your friends and family. Whatever makes you the happiest right now, you should do.
I am so glad to hear that you are not going to give up fighting. Since your cancer is so rare and has really never been seen before, they don't know how it is going to react. You are such a fighter, I wouldn't be surprised to see a post from you soon that says that you went into spontaneous remission. I will hope hope hope for that outcome.
In the meantime, I will continue to think of your and root you on. Sending positivity, hope and strength your way.
Kat, YOU are a survior AND a rockstar!0 -
We are here with You.
Sweet Kat—This is VERY upsetting. There are so many things I hate about this. But I am right here with you. We are all here with you. Don’t ever give up. You keep on going and enjoying every minute of life. That’s right. You do the recommended treatment. This may be a dumb question, so I apologize, would it be possible to go to a different facility, like Sloan? I only ask because a co-worker of mine has an aunt, who was dx with a rare cancer last year (one in 5 million, yes, the number is correct), and Sloan couldn’t even treat her – plus it has spread. She contacted another facility who apparently handled that kind of cancer before and they decided to treat her. The lady has taken 3 scans, and her tumors are shrinking. A miracle, because she was really sick. She was already having symptoms and a fever of over 103 for over a month. So she is now doing better and continuing with her chemo treatments. There could be big facilities that can have a good reputation on handling all cancers, or some, but not all can treat rare types (sorry if this sounds like a “DUH” – just trying to visualize you being in front of me, what I would say…). I am sure your parents have tried a lot of methods already, but just wondering how the research was done. If there is a place or two that have handled your case in the past, and maybe they can offer a better plan for you. What about out of the country? I wish so many things…
Kat, there are people who have been told “terminal” who are still here. And there are treatments getting developed all the time. Don’t give up. And please tell your family NOT to give up either. To keep searching. It is possible. Miracles happen.
Sending you a HUGE hug Kat and hoping that there is a treatment that would resolve this problem for you. I wish it with all my heart.
XOXO0 -
All I haveLoveBabyJesus said:We are here with You.
Sweet Kat—This is VERY upsetting. There are so many things I hate about this. But I am right here with you. We are all here with you. Don’t ever give up. You keep on going and enjoying every minute of life. That’s right. You do the recommended treatment. This may be a dumb question, so I apologize, would it be possible to go to a different facility, like Sloan? I only ask because a co-worker of mine has an aunt, who was dx with a rare cancer last year (one in 5 million, yes, the number is correct), and Sloan couldn’t even treat her – plus it has spread. She contacted another facility who apparently handled that kind of cancer before and they decided to treat her. The lady has taken 3 scans, and her tumors are shrinking. A miracle, because she was really sick. She was already having symptoms and a fever of over 103 for over a month. So she is now doing better and continuing with her chemo treatments. There could be big facilities that can have a good reputation on handling all cancers, or some, but not all can treat rare types (sorry if this sounds like a “DUH” – just trying to visualize you being in front of me, what I would say…). I am sure your parents have tried a lot of methods already, but just wondering how the research was done. If there is a place or two that have handled your case in the past, and maybe they can offer a better plan for you. What about out of the country? I wish so many things…
Kat, there are people who have been told “terminal” who are still here. And there are treatments getting developed all the time. Don’t give up. And please tell your family NOT to give up either. To keep searching. It is possible. Miracles happen.
Sending you a HUGE hug Kat and hoping that there is a treatment that would resolve this problem for you. I wish it with all my heart.
XOXO
is a big huge hug for you.
You are an amazing woman, your family sounds wonderfully loving, and all of this is heartbreaking. Miracles happen and I desperately want one for you. I send love, energy with all my "oomph" and I carry you all in my heart.
xoxo
Victoria0 -
I'm saddened beyond words.aisling8 said:All I have
is a big huge hug for you.
You are an amazing woman, your family sounds wonderfully loving, and all of this is heartbreaking. Miracles happen and I desperately want one for you. I send love, energy with all my "oomph" and I carry you all in my heart.
xoxo
Victoria
I'm saddened beyond words. You are truly an inspiration and I am mad for you that you ever had to end up here communicating with us. You are way to young to have to face this kind of diagnosis. May your youth and strength soar higher then medicine has ever taken anyone. I pray you will be the trailblazer to defy all odds.
I love you dear Kat,
Lorrie0 -
Kat, your pictures are
Kat, your pictures are amazing. I'm so sad to read that your doctors are at a loss but like my sisters have said, don't give up and I'm hoping that the miracle we all wish for is granted and to YOU. You are so young but wise beyond your words. I am a mother of a 26 year old and I cannot imagine losing her. It is hard enough that I am now Stage IV.
Keep up your positiveness and enjoy your time with friends and family. Make some of those memories that are never forgotton!!
Sending strength, love and (((hugs))),
Debbie0 -
This is very upsettingaisling8 said:All I have
is a big huge hug for you.
You are an amazing woman, your family sounds wonderfully loving, and all of this is heartbreaking. Miracles happen and I desperately want one for you. I send love, energy with all my "oomph" and I carry you all in my heart.
xoxo
Victoria
This is very upsetting to me and all your Pink Sisters.We want more than anything for you to get better.Like someone said Miracles happen.I know from my own experience they do.
I'm happy you've decided to be with family and friends.They adore you. The youngest and the only girl is of course heartbreaking for your parents and your brothers.
Last night there was somethiong on my radio. I only listen to it in the car.It was about a cancer treatment in Dayton.Whatever it was I've never heard of it. I'm going to do some searching.I remember something about 5 treatments and cancer.Not sure for all cancers or specifics. I know you've seen the best doctors though
Upsetting doctors don't know much about this cancer. There is so much to learn about this beast. Everyday I read new treatments that boggle my mind.
For the crying, You have every right to cry.We're all crying for you and for others that are still fighting this beast.
Hootiegirl.You're gonna fight like a girl and beat this.You inspire all of us.You know we care.
WOW I'm surprised I made it thtough this post.In the beginning I thought I wouldn't be able to finish. Teardrops.
Thoughts and Prayers to you and your family.Do nothing but concenttrate on your health, family and friends.
Lynn Smith0 -
A Note from Someone
Hello again Kat – I have an aunt who has a strong faith in God and I have asked her to please set up prayers for you at her church. She has been supporting me greatly during these last year. She had a message for you:
She said to never call this illness “your cancer”. Words are powerful. Words you declare can be powerful. That everything you speak of related to this situation, never say the words as belonging to you. She said to declare yourself as free from this illness in the name of the Son, Jesus. To say it out loud. That God loves you very much. To Believe and always think your outcome will be GREAT. Always. No matter what you hear or see. She is willing to speak to you too. She has a great page on facebook. I will send you a request so you can join, if you'd like.
Sending you another Huge Hug.0 -
Kat you keep on believing in
Kat you keep on believing in Miracles. I believe in miracles. You are so vibrant and so full of life, and so very beautiful. Enjoy your friends, enjoy your family, enjoy your travel as I know you will.
Kat every human being on this earth is terminal, that is a fact. I believe we all have our mission in life and when we have completed all those missions our good Lord calls us back home. Only He decides that day and time. No doctor or group of doctors as a matter of fact no human can tell us when HE calls us to our eternal home. My God tells me in His word to live each day to the fullest and to not worry about tomorrow because He will and does provide as easily as he feeds the birds in the field.
Kat you are sunshine for many of us. Keep that sunshine going and enjoy each and every day. I will be lifting you and your family in prayer.0 -
Just so you knownatly15 said:Kat you keep on believing in
Kat you keep on believing in Miracles. I believe in miracles. You are so vibrant and so full of life, and so very beautiful. Enjoy your friends, enjoy your family, enjoy your travel as I know you will.
Kat every human being on this earth is terminal, that is a fact. I believe we all have our mission in life and when we have completed all those missions our good Lord calls us back home. Only He decides that day and time. No doctor or group of doctors as a matter of fact no human can tell us when HE calls us to our eternal home. My God tells me in His word to live each day to the fullest and to not worry about tomorrow because He will and does provide as easily as he feeds the birds in the field.
Kat you are sunshine for many of us. Keep that sunshine going and enjoy each and every day. I will be lifting you and your family in prayer.
I was thinking about your post, Kat, and you said you'll never get to be a nurse and help other people. I know what you mean, but you need to know that you have helped other people already. No, you didn't give us an injection or check our IV or make our hospital bed, but you have given us a shining example of courage, determination, selflessness, enthusiasm, acceptance, and a sweet-natured humanity that can't be taught.
You have helped other people. Just so you know:)
Much love,
Victoria0 -
Oh, Kataisling8 said:Just so you know
I was thinking about your post, Kat, and you said you'll never get to be a nurse and help other people. I know what you mean, but you need to know that you have helped other people already. No, you didn't give us an injection or check our IV or make our hospital bed, but you have given us a shining example of courage, determination, selflessness, enthusiasm, acceptance, and a sweet-natured humanity that can't be taught.
You have helped other people. Just so you know:)
Much love,
Victoria
I have re-read your post several times. I feel such a deep sadness in my heart that you and your family are having to deal with this. To say this is not fair seems like the understatement of the century. Most of the words you wrote made me very upset and angry. I hate this beast so much--but hearing all this about you--it's just too much.
However, there were a couple of things that made me happy. I am glad that you said you are not giving up. I already knew that, though--the Kat we've come to know and love just wouldn't do that. I believe in miracles as well and I believe that the Lord will take care of all of us. Many here have told about friends or family who weren't expected to do well, but yet they're thriving today. Why not the rest of us.
I also love the fact that you have decided to make changes in your life. You'll be celebrating your birthday in Vegas surrounded by those you love and who love you and then on to Europe this summer with your family. That sounds like exactly what I'd do--in fact, I am. As you might remember I was just diagnosed at Stage IV a couple of months ago (you sent me a lovely post, by the way), and the first thing I asked my husband was--"when can we go to Kauai?"
Kat, as Victoria said above--you have definitely helped so many people without maybe even knowing it. We look at you and all your gusto for life and it spurs the rest of us on. You are at the top of my prayer list every night--and will remain there.
I am sending all my love, positive energy, hope and encouragement to you.
Love and hugs, Renee0 -
Stay Strong
Kat,
You are doing exactly what I would do if I were your age. Enjoy the life that you have and spend it with the people you love. It's not fair a young girl like you should be going through this. Your positive attitude has always inspired me. Our journeys in life are not always what we choose. It's how we take the journeys that is important. I don't think anyone's life ever turns out the way they imagined. I know mine didn't. I'm older than you and have faced cancer twice and now it's being treated as a chronic disease. You are a beautiful person inside and out and though not all your dreams may come true your impact on others may change their dreams and what they do. I'll keep praying for a miracle for you Kat. You deserve one.
Love, Terry0 -
Kat, I'm so sorry you and
Kat, I'm so sorry you and your family are going through this. I can't even imagine at this point what hearing the word 'terminal' feels like. UGH! I'm so sorry. It's so not fair.
I will be praying for a miracle for you, along with the other Pink Sisters! I really admire your strength and your fun spirit. How exciting to spend your 21st birthday in Vegas! You just keep living it up and keep on keepin' on! A little spunk and sass goes a long way in this fight, and you have it, Girl! And don't believe for a second you haven't got to help anyone. Your friends and family have all received beautiful gifts of life and memories from you. All of us on this board have been touched by your stories and your beauty and courage.
xo
Julie0
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