Looking for mentor

KAC07062021
KAC07062021 Member Posts: 26 Member
edited February 2022 in Uterine/Endometrial Cancer #1

Uterine stage IV leiomyosarcoma. Uterus, lungs, brain lesions. Six rounds five days in patient chemo. Soon 4-5 radiation therapy sessions on brain lesions January 2022. Female, 37 at diagnosis. Looking for similar YA cancer survivor with my stage and metastasis and how they survived. Also what did they do in the mean time to occupy their time, work part time? Stayed on disability? Died after 1 year from brain lesions metastasis diagnosis?


I understand my cancer is unusual. Even more unlikely in 30s and metastasized to lungs. Then astronomically impossible brain lesions. But will I even make the 1 year mark or should I plan on the potential 44.55 day survival after brain lesions diagnosis statistics show?


How to live with what time I have?

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Comments

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #2

    I'm an older lady, and have no where near what you've got going on, but I will say that I absolutely admire your ability to articulate what's going on. And how to occupy your time? If I were you, I'd travel as much as possible. You may need to stay nearby your treatment facility, but I'd do day trips, be in nature, take walks, pet my dog and cat, whatever makes you relax so your body is able to heal. Massage? music? I'd pull in all the most high frequency (most excellent) vibes and love possible, and remember---you are not a statistic, and this oddly unique disease is different for everyone. Wishing you love, luck, and all the very best.

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #3

    @Harmanygroves thank you for your good words

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #4

    Hello Kelly. I don't think I can mentor you in this journey but I bet there are a whole lot of women willing to lend you a hand to hold. I hope you are surrounded by love.

    I read your post and it has touched my heart. Living in limbo and keeping positive - my what an inspiration you are to me.

  • Dak82
    Dak82 Member Posts: 109 Member
    #5

    Hi Kelly. I am certainly not in your position but I can sympathize in looking at statistics and wondering if that is you. Like Harmony said, each of us are individuals and a single statistic does not define our case. When we found extensive metastases to my lungs after chemo I snuck a peak at survival rates. 11.7 months. But I haven’t dwelled on it. Working serves as a distraction for me but I tend to take on too much and am currently quite exhausted from 3 straight 50+ hour weeks. So I might have to ratchet it back. I kept my life the same because to me that was part of the fight—why should it change how I carry out my life. But we have to find answers in our own situations.

    Best wishes to you and I hope your treatments take you where you want to be with many happy years ahead. Don’t be afraid to do research on alternative diets. Our doctors don’t like it but I’ve read too many success stories to discount it outright.

    Cheers,

    Deb

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #6

    Thank you everyone. A small update, I'm on steroids 3x day and anti seizure 2x day with 3 days radiation treatment booked for next week. I really Hope this is the last surprise bump in my journey to cancer recovery .

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #7

    I rarely say, type, or think, "You GO GIRL!" but wow, you have the right attitude! It may not be the last bump, but I think it's going to be the last big bump for a long time. I love your spirit. You can do this. We all can, we all will, and we all do! Keep us posted. I want to know how you're doing.

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    edited January 2022 #8

    So, another surprise bump in the road today. My husband tested rapid positive for covid. I tested negative. My Cyber knife nurse said to get the pcr covid test Tuesday as scheduled and if I don't hear anything by 8am Wednesday to walk in for the radiation starting Wed. Through Friday. I just want to get through the radiation so looking forward to Saturday, despite this next surprise bump. It's like wtf,omg, why now? Jeesh lordy be!

    My husband is in isolation in our bedroom. I micro banned everything, have an air purifier on full blast, Clorox wiped touchy surfaces down and set myself up in the basement. The poor cats, Lima Peru and Chief Lion Cat are besides themselves.

  • Forherself
    Forherself Member Posts: 1,013 Member
    #9

    Sounds like you have done everything you can. I hope your PCR test is negative. I hope your husband is not too ill. Gosh, enough already!

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #10

    Update: 1st brain radiation down, fatigue hit after dinner so slept for like 6 hours straight

  • Forherself
    Forherself Member Posts: 1,013 Member
    #11
    https://csn.cancer.org/discussion/comment/1692206#Comment_1692206

    I have a cousin whose son has melanoma. He has brain recurrence and has had the treatment you are going through. He is doing fine after. I am so sorry you have to go through this. I hope you are feeling better. Jamie went to England after his treatments.

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #12
    https://csn.cancer.org/discussion/comment/1692247#Comment_1692247

    My second treatment was Thursday and very long, almost 45 minutes. I needed a break halfway through because the back of my skull and my neck muscles started seizing from being in the Same position so long. The nurses were fantastic, letting me take a pause, spraying numbing spray on the back of my head letting me move a bit before finishing the last 20 minutes of treatment. Today the exhaustion caught up with me with extreme fatigue after breakfast and a splitting headache behind my left eye. Resting and listening to my body before my last brain radiation treatment today, Friday.

  • Forherself
    Forherself Member Posts: 1,013 Member
    #13

    I hope it works for you. It is hard to go through. Treatment outcome has improved so much, but it does take a brave, strong person to get there. You are showing so much of that. Hugs.

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #14

    Got done last radiation today. Doc is keeping steroids x3 and anti seizure x2 over the weekend because of my headache today. Hopefully Monday, I will have no headache, will be recommended taper steroids and have neurologist appointment scheduled. Looking forward to Saturday, tomorrow. Smile😊 it’s my birthday today Friday!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #15
    https://csn.cancer.org/discussion/comment/1692281#Comment_1692281

    Happy birthday!

  • Forherself
    Forherself Member Posts: 1,013 Member
    #16
    https://csn.cancer.org/discussion/comment/1692281#Comment_1692281

    Happy birthday

    37A83F02-3C16-47A7-8CED-9D16AAFCF913_1_201_a.jpeg

    Your good nature during all this inspires me.

  • cmb
    cmb Member Posts: 1,001 Member
    #17
    https://csn.cancer.org/discussion/comment/1692281#Comment_1692281

    Not the birthday you were hoping for, I'm sure, but I'm glad that you're done with radiation. I hope you feel better soon and that your husband is also recovering from COVID.

    My cat and I would also like to wish you a happy birthday and to say hi! to Lima Peru and Chief Lion Cat. However, greater participation from Griffin in these greetings would require him to extricate himself from the bowl this 15-pounder managed to squeeze himself into.

    Griffin-inBowl.JPG


  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #18
    https://csn.cancer.org/discussion/comment/1692289#Comment_1692289

    Teehee! thank you cmb and Griffin!

  • KAC07062021
    KAC07062021 Member Posts: 26 Member
    #19
    https://csn.cancer.org/discussion/comment/1692285#Comment_1692285

    Thank you. Staying positive even when fatigued

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #20

    Happy Birthday!

    Half of January has gone by so it might be too late to start a January birthday thread, but hope your day was great!

    Denise

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #21
    https://csn.cancer.org/discussion/comment/1692285#Comment_1692285

    Love the bunny!

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