Some bad news
HootieGirl
Member Posts: 85
Hi ladies!
Okay so spring break was amazing. Had so much fun with my friends on the beach and it was exactly the relaxing vacation that I needed. It was so hard coming back to real life. I am trying to upload some pictures for y'all to look at, but I can't figure out how!! I'm assuming you put them in a blog post? But I can't figure out how to upload more than one. Anyway, if anyone wants to help me figure out how to do that, that would be great!
I had my petscan in the city yesterday. My surgeon was able to get clean margins when she operated on me in January, so we were hopeful that my scan would be clean. Although the area she operated on was negative, it has spread to 3 different places in my right hip as well as my left hip and my vertebrae. I'm almost just in shock and don't really know how to react. We are going to Boston a week from Sunday to meet with the sarcoma experts at the cancer institute at Harvard to get a second opinion about further treatment options. The problem is I'm not responding to treatments (chemo/radiation) and I am not eligible for proton therapy since I have so much metal in my leg. We are hoping to find an experimental drug trial at MD Anderson that will be effective, but since this is so rare and reacting so unpredictably, it is hard to know what will work. I am just trying to keep busy with work and school and not think too much about things I have no control over. We will see what my doctors/surgeons say. Wish I had better news, but I will be sure to keep y'all updated when I find out more. Hope you girls are doing well!! Think of you always.
Kat
PS. Did something kind of crazy and got a TATTOO today! I can't believe I did it and I feel like my parents are going to have a heart attack, but I really like it. It says "survivor" in cursive on my wrist. I will try to post a picture of it soon!!
Okay so spring break was amazing. Had so much fun with my friends on the beach and it was exactly the relaxing vacation that I needed. It was so hard coming back to real life. I am trying to upload some pictures for y'all to look at, but I can't figure out how!! I'm assuming you put them in a blog post? But I can't figure out how to upload more than one. Anyway, if anyone wants to help me figure out how to do that, that would be great!
I had my petscan in the city yesterday. My surgeon was able to get clean margins when she operated on me in January, so we were hopeful that my scan would be clean. Although the area she operated on was negative, it has spread to 3 different places in my right hip as well as my left hip and my vertebrae. I'm almost just in shock and don't really know how to react. We are going to Boston a week from Sunday to meet with the sarcoma experts at the cancer institute at Harvard to get a second opinion about further treatment options. The problem is I'm not responding to treatments (chemo/radiation) and I am not eligible for proton therapy since I have so much metal in my leg. We are hoping to find an experimental drug trial at MD Anderson that will be effective, but since this is so rare and reacting so unpredictably, it is hard to know what will work. I am just trying to keep busy with work and school and not think too much about things I have no control over. We will see what my doctors/surgeons say. Wish I had better news, but I will be sure to keep y'all updated when I find out more. Hope you girls are doing well!! Think of you always.
Kat
PS. Did something kind of crazy and got a TATTOO today! I can't believe I did it and I feel like my parents are going to have a heart attack, but I really like it. It says "survivor" in cursive on my wrist. I will try to post a picture of it soon!!
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Comments
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you
You will be on my prayer list.0 -
We're with you.....
Although we can't be with physically, always know we are with you in spirit, thoughts and prayer....I can fully relate to getting bad scan results...
It sucks! Hopefully they can find the right chemo cocktail for you.....at Harvard or MD Anderson...I don't know where you live but another great place is the Cleveland Clinic in Ohio...
I was in a clinical trial last summer...just a head's up....they are extremely rigid..mine was through Sloan Kettering in NY...even though I am in the south...my Oncologist went to NY to plead my case....it was an oral chemo...took two cycles...second one put me down for 10 days and didn't do anything according to my scans.....So I was booted...lol
All I can say, sweetie, is I pray that they find what you need....find what we all need.....
I am so glad your trip was fun and that you had a good time! I find, also, when I have the energy, that trying to stay busy does help..I'm
Slowly but surely getting some energy back from 10 radiation treatments to the brain, since 3 small places showed up on my last scans...told my husband now I have a real excuse for being goofy!!!! lol..... now back on Chemo every 2 weeks..I just suck up what ever they throw at me!
Keep us posted when you feel up to it....because of your young age we've all taken you under our wings...as most of us are older...
Wishing you the very best...
Big hugs, Nancy0 -
thinking of you
Denise
thinking of you
Denise0 -
Prayer sent your waydisneyfan2008 said:thinking of you
Denise
thinking of you
Denise
Honey, I have children your age and it hurts my heart to imagine what you are feeling. Stay as active as possible and never give up. Love and prayers.0 -
So glad you had an awesomebad121749 said:Prayer sent your way
Honey, I have children your age and it hurts my heart to imagine what you are feeling. Stay as active as possible and never give up. Love and prayers.
So glad you had an awesome time, I'm sure it was much needed...please know you are in our hearts and prayers
Take care and god bless
Eva0 -
I'm sorryepark said:So glad you had an awesome
So glad you had an awesome time, I'm sure it was much needed...please know you are in our hearts and prayers
Take care and god bless
Eva
My heart just sank when I read your post. I am so sorry that you are going through this. I wish I could take all of this away from you. You have a great attitude.
Your tatoo sounds precious. I can't wait to see the picture.
Stay strong and fight fight fight.
Hugs & God bless,
Dawne0 -
Not so good news
I saw the subject of this post and the name attached to it and I said,"Oh no. No. No. No" and the tears started rolling down my cheeks. It is strange to have such emotion for someone I have never met in person but I feel so much for you. I have a 19 year old daughter and a 21 year old son and I can only imagine them in your place. My heart goes out to your parents, also. I hope that the docs at Harvard are able to come up with a good treatment plan for you. Now that tattoo. . . . that is another matter.
Thank you for keeping us updated.
IRENE0 -
I will keep you in myTexasgirl10 said:I'm sorry
My heart just sank when I read your post. I am so sorry that you are going through this. I wish I could take all of this away from you. You have a great attitude.
Your tatoo sounds precious. I can't wait to see the picture.
Stay strong and fight fight fight.
Hugs & God bless,
Dawne
I will keep you in my prayers0 -
Oh, Kat--not what we wanted to hearjessiesmom1 said:Not so good news
I saw the subject of this post and the name attached to it and I said,"Oh no. No. No. No" and the tears started rolling down my cheeks. It is strange to have such emotion for someone I have never met in person but I feel so much for you. I have a 19 year old daughter and a 21 year old son and I can only imagine them in your place. My heart goes out to your parents, also. I hope that the docs at Harvard are able to come up with a good treatment plan for you. Now that tattoo. . . . that is another matter.
Thank you for keeping us updated.
IRENE
But, you are taking the bull by the horns and seeking another treatment that will work. We all know how strong you are--and how positive. That is so important, but sometimes hard to keep up when things seem to keep going in a negative direction.
Stay strong and positive, dear Kat. I am so glad you're able to carry on with school and friends while you're going through this. Also, about that tatoo--if anyone deserves to have "survivor" on their wrist--it's you!
Can't wait to see your spring break pics.
Love and hugs, Renee0 -
Tough news
Kat, that is really tough news. I am sorry that it wasn't better for you. I hope that the doctors at Harvard or MD Anderson can offer you a plan that works and that you will be rid of this awful disease! You have really been through enough. At least you had a great spring break...and got a tattoo! Post a picture, I bet it looks fantastic and I bet even your parents will love it.
Keep in touch and let's see that tat!
All the Best,
Clementine0 -
Oh, dearClementine_P said:Tough news
Kat, that is really tough news. I am sorry that it wasn't better for you. I hope that the doctors at Harvard or MD Anderson can offer you a plan that works and that you will be rid of this awful disease! You have really been through enough. At least you had a great spring break...and got a tattoo! Post a picture, I bet it looks fantastic and I bet even your parents will love it.
Keep in touch and let's see that tat!
All the Best,
Clementine
That's SO NOT what we wanted to hear.
Sending positive energy and hope that exactly what you need can be given to you by the specialists.
xoxo
Victoria0 -
Kat
Sorry that the scan did not give you better news. I am so happy that you enjoyed spring break though. It seems like we take the bad with the good, and that can be pretty hard to do. I hope that Harvard and/or MD Anderson has some better options for you.
It is so hard to imagine being your age and going through so much.
I love that you got a tattoo, and they may have the heart attack (smile). But in the realm of things, I think a tattoo will be a very small heart attack! I got one on my chest to cover all of the scars, it is a hummingbird and a hibiscus, it is absolutely beautiful. I got it right after my first round of cancer about 9 years ago. My mother was older in her late 80's and did not like tattoo's but I showed it to her in the nursing home, and she smiled and said it was beautiful! Then she told me I was nuts! lol
I wish you the best, please keep us posted on what they have to offer. My prayers are always with you sweet girl.
Hugs,
Carol0 -
Prayers
Hi,
Glad you had a good time on spring break. It's important to enjoy life while you are dealing with all this. Sorry your scan didn't come back well. I'm happy you are taking a trip to Boston though, my territory. They have some of the best doctors here and I hope they can find a treatment for you. I have a friend who had triple negative and she did a clinical trial and has been cancer free for 4 years now. I'm praying for you. Don't forget to keep enjoying life too. (((hugs)))
Terry0 -
Hugs & Prayers
Kat... no truer words can be said about you. You are, indeed, a Survivor. So great to hear you had a blast with your friends on your vacation. Kudos to you for taking a break and treating yourself to a great vacation.
I am sorry to hear about the scan. It's not what a Survivor wants to hear, but it sounds like you have a terrific team of doctors at your side who are looking into possible treatments for you.
I will keep you in prayer as you continue moving forward. Wishing you continued Strength, Courage, Hope, & Faith.
Much Love and Hugs to you Beautiful Muscle Girl!0 -
You are
MY inspiration. What a wonderful attitude you have. I pray that you and your doctors can get the right cocktail for you. I know God is watching over you. Keep the faith sister. I just wish I knew what to say. Dayum ... I wish I had a magic pill to make this all go away.
Love you ....
Keep up the great attitude ...0 -
You Have a Great Spirit
Dear Kat,
I have always admired your spirit, your drive, your fight, and your positive nature. I do pray that one of these great institutions will have an answer for a new treatment plan to beat this cancer.
Keep looking at the word on your wrist and keep believing the word...SURVIVOR.
Lots of Love and Lots of Hugs,
Janelle0 -
Rare and reacting unpredictablyDifferent Ballgame said:You Have a Great Spirit
Dear Kat,
I have always admired your spirit, your drive, your fight, and your positive nature. I do pray that one of these great institutions will have an answer for a new treatment plan to beat this cancer.
Keep looking at the word on your wrist and keep believing the word...SURVIVOR.
Lots of Love and Lots of Hugs,
Janelle
Doggone it, Kat, this is NOT what I want for you. Please know that we're all behind you - or maybe we're your infantry - going ahead of you to help drive this enemy back. It sounds like your docs are really looking out for you as well. Sending hugs and prayers for your visit next week.
Suzanne0 -
Oh Kat, you are such a
Oh Kat, you are such a beautiful person. I'm sure the tat just adds to your beauty, and I'm betting your parents will see it that way too. A break and the time with your friends...keep doing those special things for yourself. I love that you keep showing us how to get through this with so much energy, vitality, and life.
As for your scan results, I really hope you find the treatment that will completely eliminate the cancer.
Hugs,
Linda0
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