Borrowed time......?

missC
missC Member Posts: 6
edited March 2014 in Young Cancer Survivors #1
I am almost done with my chemo and faced with the possibility of additional radiation or other treatment if it's not all gone by my last pet scan, and it's just starting to hit me that I'm going to have to deal with this crap for the rest of my life.
I've found out that there are a lot of late-onset side effects to a lot of the treatments, especially radiation, that don't manifest themselves until 10, 20, 30 years down the road...

This pretty much freaks me out. During treatment, i was always in the mindset that this is only temporary, I'm going to beat it and then I can go on with my life. but the idea that if I get radiation I will most likely end up with breast cancer and heart issues makes me feel that I'm just buying time, that I won't get to live a long life like I always expected to.
Do any of you feel the same way? How do you deal with the realities?
I guess I'm just having a hard time coming to terms that cancer really is forever, not just an illness you treat and it goes away....

thoughts?

-missC

Comments

  • Emilyfimily
    Emilyfimily Member Posts: 141
    #2
    Yeah, all the long term
    Yeah, all the long term stuff really stinks. I'd get depressed if I let myself think about how even when I "beat it" one of these days, it'll always be part of my life in the form of check ups, never ending what if worries, side effects, etc. There's a lot of good stuff in my life, though. I think, even with this cancer stuff, I've still got it a lot better than a lot of other people. And even with cancer, I'm happy. You gotta figure out what makes you happy in your life, and grab hold of that and hang on to it with everything you've got. Another thing is, the most important thing, I don't know what your religious views are, but I have a personal relationship with Christ. So, I know where I'm going after I'm done here. I'll be there for eternity. And really, on the timeline of eternity, what's our 80 years here on Earth anyway? A blip. In a billion years, when I'm diggin' the music in Heaven, I might remember this stuff like today I vaguely remember a slight itch I had last Tuesday. And I might not. I might be like, "what was that?..started with a C..ah, whatever. Crank it up, St Peter!" Know what I mean? Got any questions, let me know. If I just ticked you off, I apologize sincerely. Just being honest. That's how I'm going to get through all this. 's allright. (:
  • endymion
    endymion Member Posts: 1
    #3
    Emilyfimily said:

    Yeah, all the long term
    Yeah, all the long term stuff really stinks. I'd get depressed if I let myself think about how even when I "beat it" one of these days, it'll always be part of my life in the form of check ups, never ending what if worries, side effects, etc. There's a lot of good stuff in my life, though. I think, even with this cancer stuff, I've still got it a lot better than a lot of other people. And even with cancer, I'm happy. You gotta figure out what makes you happy in your life, and grab hold of that and hang on to it with everything you've got. Another thing is, the most important thing, I don't know what your religious views are, but I have a personal relationship with Christ. So, I know where I'm going after I'm done here. I'll be there for eternity. And really, on the timeline of eternity, what's our 80 years here on Earth anyway? A blip. In a billion years, when I'm diggin' the music in Heaven, I might remember this stuff like today I vaguely remember a slight itch I had last Tuesday. And I might not. I might be like, "what was that?..started with a C..ah, whatever. Crank it up, St Peter!" Know what I mean? Got any questions, let me know. If I just ticked you off, I apologize sincerely. Just being honest. That's how I'm going to get through all this. 's allright. (:

    What if you do not believe
    What if you do not believe in eternal after life ?
  • Emilyfimily
    Emilyfimily Member Posts: 141
    #4
    endymion said:

    What if you do not believe
    What if you do not believe in eternal after life ?

    valid point.
    Well, I guess
    valid point.
    Well, I guess if you don't, then what does all this matter anyway? If you pass away, and in doing so disintigrate into oblivion, you'll have no memory of any of this b/c you won't have a memory period. You won't exist anymore - not mentally, not physically...nothing. So it shouldn't matter because whatever happens to you here will cease to exist along with you. *BUT*, what if there is an eternity? Isn't it better to be prepared for it just in case? Then even if you are prepared, and it turns out there isn't one, well what would that matter anyway? At least while you're here on Earth you won't have to waste time being worried about the whole ceasing to exist thing.
    Fortunately, there *is* an eternity. I don't know how to make anyone believe that, so am not really into debating it. That's just what I know. Not because it's a good fairy tale, but because every piece of me knows this world and this body is entirely much too complicated and put together too perfectly not to have a Great Designer. And I know who that Great Designer is, and what He said. And He said if I give in and just accept Him, I'll have eternity in Heaven. And He said if I don't, I'll have eternity in Hell. I see Him working in my life and others' lives in otherwise unexplainable ways, I feel His love for me, and I have this Bible that tells me all of this as well - a Bible that has *never* *ever* not once in several thousand years been proven wrong by any of the thousands of folks who keep trying. So I have no reason to doubt His existance or his love for this world he created. So it's a pretty easy decision for me.
    Well, that's all I got. Once again, hope I didn't tick you guys off. Not my intention.
  • monniw
    monniw Member Posts: 6
    #5
    again and again
    i was 16 when i had my first diagnosis (Leukemia), which was in 2000. I had since been in remission of leukemia. But in 2008 I was diagnosed with a malignant tumor in my parotid gland that my oncologist (who is world reknown) had no explaination for. I had chemo for the leukemia and then i had radiation and surgery for the tumor.

    From 2000 through 2008 I always thought, "gosh i really dont know if i can do it again if i relapsed, i dont know if my family can do it again, my parents, etc." Then i was struck with another TOTALLY unrelated tumor all before the age of 25. What are the chances?! Well, i did the calculations (probability of acquiring APML and probability of acquiring MEC). Apparently, it is easier to win the lottery than it is to get both the types of cancer I had.

    When my doc told me i needed radiation my first question was, "Well, doesnt that also cause cancer?" and their best answer was "Yes, but you have to deal with the one you have now and bank that if and when you acquire radiation-induced cancer that we'll have a cure by then". That wasn't the answer I was looking for but I had already acquired a cancer that is totally rare for my age, my medical history, etc.

    So basically you can't really keep analyzing the odds and probabilities of acquiring cancer in the future, or the statistics of a relapse... you have to live your life with no regrets and to the fullest so that if/when health becomes an issue at least you can face it knowing you did what you wanted for as long as you could, then you climb over the next cancer mountain and move on.

    I no longer have a primary care physician. I have been seeing my oncologist since I was 16 and now I'm 25 yrs old. I frequented the hospital so often and for long I think I've logged in more hours than a lot of their own staff. My experience with cancer will forever be part of my life. I make time from work and school for to see my oncologist, my ENT surgeon, my radiation oncologist, and to get my regular CT/MRI scans and ECHO's once a year. Yea, it's a pain but i've been doing it for long now it is part of regular life. And honestly, I welcome it. Every time I come home from a doctor visit knowing I am cancer free I love it that much more.
  • Perstephanie
    Perstephanie Member Posts: 26
    #6
    I'm freaked out for a lot of
    I'm freaked out for a lot of the same reasons. My body always just worked before. I never got sick - when I did, I was always less sick than whoever gave it to me, and had whatever it was for less time. Never got fevers, probably because I have Hashimoto's and may have been hypothyroid - I don't know. The idea that from now on I can't ignore symptoms and I have to keep getting checked regularly forever and I will never feel like I can just have faith in my body to be okay for me ever again. I was sick for 3 months last spring, I've developed horrible allergies, found out about my autoimmune disorder, and now this. Nothing works anymore and no matter how well I do I never get to forget about this because you can't; you have to keep getting checked, even if it's less often, and I don't think I'll ever feel like anything my body does is no big deal ever again. I had a kidney stone a year and a half ago and I basically ignored it until the pain was so bad I couldn't function and went to the ER, because I just figured I was fine. I don't think I'm ever just going to assume I'm fine again. I don't know. Maybe I'm making too big a deal about it - there's a really high cure rate for what I have, but people have also had recurrences 30 years later. I don't know how long it'll be before I feel like I can relax on any level again.
    I'm sorry. I wish I had helpful stuff instead of jump dumping my stress all over this board - I've been on too high a dose of Synthroid for months so I've been experiencing hyperthyroidism that whole time without realizing, and I don't know how long it'll be before that settles down. Feel like I'm losing my mind. But yeah. I'm probably overreacting to everything because of the panic and exhaustion and depression that are caused by too much T4 in my system.
    I hope you figure stuff out in a way that works for you.
    Steph
  • Perstephanie
    Perstephanie Member Posts: 26
    #7
    monniw said:

    again and again
    i was 16 when i had my first diagnosis (Leukemia), which was in 2000. I had since been in remission of leukemia. But in 2008 I was diagnosed with a malignant tumor in my parotid gland that my oncologist (who is world reknown) had no explaination for. I had chemo for the leukemia and then i had radiation and surgery for the tumor.

    From 2000 through 2008 I always thought, "gosh i really dont know if i can do it again if i relapsed, i dont know if my family can do it again, my parents, etc." Then i was struck with another TOTALLY unrelated tumor all before the age of 25. What are the chances?! Well, i did the calculations (probability of acquiring APML and probability of acquiring MEC). Apparently, it is easier to win the lottery than it is to get both the types of cancer I had.

    When my doc told me i needed radiation my first question was, "Well, doesnt that also cause cancer?" and their best answer was "Yes, but you have to deal with the one you have now and bank that if and when you acquire radiation-induced cancer that we'll have a cure by then". That wasn't the answer I was looking for but I had already acquired a cancer that is totally rare for my age, my medical history, etc.

    So basically you can't really keep analyzing the odds and probabilities of acquiring cancer in the future, or the statistics of a relapse... you have to live your life with no regrets and to the fullest so that if/when health becomes an issue at least you can face it knowing you did what you wanted for as long as you could, then you climb over the next cancer mountain and move on.

    I no longer have a primary care physician. I have been seeing my oncologist since I was 16 and now I'm 25 yrs old. I frequented the hospital so often and for long I think I've logged in more hours than a lot of their own staff. My experience with cancer will forever be part of my life. I make time from work and school for to see my oncologist, my ENT surgeon, my radiation oncologist, and to get my regular CT/MRI scans and ECHO's once a year. Yea, it's a pain but i've been doing it for long now it is part of regular life. And honestly, I welcome it. Every time I come home from a doctor visit knowing I am cancer free I love it that much more.

    wow
    monniw - maybe you should start playing the lottery?

    I have papillary thyroid carcinoma which the doctors basically act like isn't even cancer, but I have to decide whether or not to have the radioactive iodine treatment - which could cause a different kind of cancer; leukemia seems most likely. I'm sure the chances are incredibly small but I kind of want to stick with the cancer I have - plus it's not like there aren't other side effects that freak me out.

    Anyway seriously if the lottery were karmic you WOULD win. It's awesome that you're doing well now though.
  • Jules564
    Jules564 Member Posts: 8
    #8
    Emilyfimily said:

    valid point.
    Well, I guess
    valid point.
    Well, I guess if you don't, then what does all this matter anyway? If you pass away, and in doing so disintigrate into oblivion, you'll have no memory of any of this b/c you won't have a memory period. You won't exist anymore - not mentally, not physically...nothing. So it shouldn't matter because whatever happens to you here will cease to exist along with you. *BUT*, what if there is an eternity? Isn't it better to be prepared for it just in case? Then even if you are prepared, and it turns out there isn't one, well what would that matter anyway? At least while you're here on Earth you won't have to waste time being worried about the whole ceasing to exist thing.
    Fortunately, there *is* an eternity. I don't know how to make anyone believe that, so am not really into debating it. That's just what I know. Not because it's a good fairy tale, but because every piece of me knows this world and this body is entirely much too complicated and put together too perfectly not to have a Great Designer. And I know who that Great Designer is, and what He said. And He said if I give in and just accept Him, I'll have eternity in Heaven. And He said if I don't, I'll have eternity in Hell. I see Him working in my life and others' lives in otherwise unexplainable ways, I feel His love for me, and I have this Bible that tells me all of this as well - a Bible that has *never* *ever* not once in several thousand years been proven wrong by any of the thousands of folks who keep trying. So I have no reason to doubt His existance or his love for this world he created. So it's a pretty easy decision for me.
    Well, that's all I got. Once again, hope I didn't tick you guys off. Not my intention.

    Very well put
    I just wanted to let you know that you stated it very well. I too have cancer but am 45 years old. If I didn't have God...I'm not sure how I would have made it through all of this. I can see him shining through you. God bless!
  • 24242
    24242 Member Posts: 1,398
    #9
    Perstephanie said:

    I'm freaked out for a lot of
    I'm freaked out for a lot of the same reasons. My body always just worked before. I never got sick - when I did, I was always less sick than whoever gave it to me, and had whatever it was for less time. Never got fevers, probably because I have Hashimoto's and may have been hypothyroid - I don't know. The idea that from now on I can't ignore symptoms and I have to keep getting checked regularly forever and I will never feel like I can just have faith in my body to be okay for me ever again. I was sick for 3 months last spring, I've developed horrible allergies, found out about my autoimmune disorder, and now this. Nothing works anymore and no matter how well I do I never get to forget about this because you can't; you have to keep getting checked, even if it's less often, and I don't think I'll ever feel like anything my body does is no big deal ever again. I had a kidney stone a year and a half ago and I basically ignored it until the pain was so bad I couldn't function and went to the ER, because I just figured I was fine. I don't think I'm ever just going to assume I'm fine again. I don't know. Maybe I'm making too big a deal about it - there's a really high cure rate for what I have, but people have also had recurrences 30 years later. I don't know how long it'll be before I feel like I can relax on any level again.
    I'm sorry. I wish I had helpful stuff instead of jump dumping my stress all over this board - I've been on too high a dose of Synthroid for months so I've been experiencing hyperthyroidism that whole time without realizing, and I don't know how long it'll be before that settles down. Feel like I'm losing my mind. But yeah. I'm probably overreacting to everything because of the panic and exhaustion and depression that are caused by too much T4 in my system.
    I hope you figure stuff out in a way that works for you.
    Steph

    I am sorry
    It isn't easy having to live with all we know now. It was a little easier living in the dark before having to face our own cancr fights. I think that is one thing humans do, drive ourselves crazy with all the thoughts. I too am facing new lumps after 14 years and try really hard to remember life is simple it just isn't easy for any of us. I have to remind myself of what I have control over and then again what i do not. We can spend a lot of time wasting on these thoughts and maybe missing out on the lives before us. There are no garauntees for anything in life let alone that Cancer thing.
    I am scared too and it doesn't feel good going there after all I have learned or should have up until now.
    Tara

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