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  1. #1
    Join Date
    Nov. 25, 2001
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    VA
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    3,087

    Default Battling cancer and managing fatigue

    ----------------------------------------------------

    I have a couple of cancers that developed in the past year, one is bad news and incurable, and the other is common and isn't usually a big deal. I should get the punch biopsy results today from a suspicious area that showed up in the radiated area from treatment of one of the cancers. My PCP says best case scenario is benign changes caused by radiation. I hope it's nothing more than that. I'm concerned that my body has suddenly become a champion at growing cancers over the past 12 months. I'm also concerned about what this means genetically for my son. One of them is rare and not genetically linked, to this point anyway. I have less history of cancer in my family than most people do these days. If there are only two, well it's bad luck but not unheard of. If there are three, something else has to be going on. I'm in my thirties and have had some weird health issues in the past, but nothing even precancerous. I have a few thoughts about causes, but don't want to post them for fear of being shredded. The rare cancer has outcomes that are linked closely to its histology. My histology points to the worst of the subtypes. Anyone with medical background who wants the details, feel free to PM.

    Also, anyone with a rare cancer, or rare disease in general, feel free to PM if you're fighting insurance. Navigating the healthcare system has been a nightmare since many doctors don't know the disease and insurance is pathetic. The insurance company tried repeatedly to classify one of my cancers as melanoma and so denied my treatments and surgeries. First step you need to take is being assigned a case worker in your insurance company. They don't promote that they're available, so you'll have to dig around and demand one.

    I hope to post that the latest biopsy is benign later. If not, where to start with finding someone who would work with multiple cancers? Maybe someone who's willing to look at ALL the diseases and symptoms together and who might have a lightbulb moment, rather than seeing so many different doctors? Does that doctor exist? Or do I stay with what I have now, which is a different set of specialist doctors for each cancer type? Ideally I'd like to have both but I don't know where to find someone who might look at my whole picture first.
    Last edited by CoolMeadows; Sep. 3, 2013 at 04:19 PM.



  2. #2
    Join Date
    Mar. 24, 2004
    Location
    Pottstown, PA (East Coventry)
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    3,069

    Default

    I am wondering why you continue to open yourself up to the negativity that has been displayed on your last couple of threads.

    I am thinking that you might do better to chronicle your illness and treatment in a personal blog. If you choose to you could link it on COTH.
    It would appear to me that a Blog would give you more control about what you post, when you post it and you can either restrict the blog to no comments or at least delete the ones that are depressing.

    A blog would give you the opportunity to journal and memorialize the issues you have had with getting the proper care and treatment for a rare disease. You can then make this available to people so they can hopefully learn from what you have gone through. The blog will allow you to post it for the public once you have gotten the entire history complete and you will not be distracted along the way.

    I do think that you have gotten a little hypersensitive to people's comments and are reading more into what they are writing than the poster intended. While I understand that you have been dealt with a really sucky life, lately you are coming across as very defensive.

    Take a deep breath, write your history in private in full and post it on a blog when you are a little less raw.

    I hope your current treatment provides for a very long remission since it sounds like the best you can hope for with your diagnosis. I also hope you find what you are looking for emotionally by documenting and posting your medical journey.

    I cannot begin to image what you are going through especially with your lack of a support system for you and your young son. Good luck and I hope you find some peace in your life soon, you are long overdue.
    Oh, well, clearly you're not thoroughly indoctrinated to COTH yet, because finger pointing and drawing conclusions are the cornerstones of this great online community. (Tidy Rabbit)


    7 members found this post helpful.

  3. #3
    Join Date
    Nov. 25, 2001
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    VA
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    Default

    It makes me sad but I will take it to a blog.



  4. #4
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    Sep. 7, 2009
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    Lexington, KY
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    Default

    It's probably for the best. Yes, you removed your intro sentence, but just had to mention it in the edit.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  5. #5
    Join Date
    Nov. 25, 2001
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    VA
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    Default

    Quote Originally Posted by LauraKY View Post
    It's probably for the best. Yes, you removed your intro sentence, but just had to mention it in the edit. Why?
    I took out all mention of the first sentence now. I didn't mean for it to be confrontational, just hoped people with doubts would have the decency to pm for proof first. I hope my story no longer offends anyone.



  6. #6
    Join Date
    Nov. 13, 2005
    Location
    Kentucky
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    4,133

    Default

    Cool Meadows, if you need to talk, please PM me. No judgement, I promise.


    3 members found this post helpful.

  7. #7
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
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    Default

    Quote Originally Posted by CoolMeadows View Post
    I took out all mention of the first sentence now. I didn't mean for it to be confrontational, just hoped people with doubts would have the decency to pm for proof first. I hope my story no longer offends anyone.
    And now you just did it again. Tell you what, you remove all the posts but for the first one and I'll delete mine too. That way it's just your chronicle, nothing else, no attempt at confrontation, no looking for trouble.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  8. #8
    Join Date
    Nov. 25, 2001
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    VA
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    Default

    Quote Originally Posted by LauraKY View Post
    And now you just did it again. Tell you what, you remove all the posts but for the first one and I'll delete mine too. That way it's just your chronicle, nothing else, no attempt at confrontation, no looking for trouble.

    I don't want any more fights. I'm fighting enough in life. Is it ok to ask anyone with doubts to pm?


    1 members found this post helpful.

  9. #9
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    Sep. 7, 2009
    Location
    Lexington, KY
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    Default

    Why do you need to even bring it up? You are on the disabilities thread, talk about your disabilities. I think the rest of them have gotten the message.
    Last edited by LauraKY; Sep. 3, 2013 at 03:29 PM.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  10. #10
    Join Date
    Nov. 25, 2001
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    VA
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    Default

    I do have a question for anyone who's been through radiation or really anyone who's dealt with fatigue for any reason. How'd you get your energy back? I'm so tired. The horses get fed and see the farrier but that's about it. My two aren't rideable anyway. I was doing the Paleo thing this spring but got kidney stones so I'm nervous to try it again. Ideally I'd like to get a rideable horse because I think it would be positive to ride again but I want my energy up first. I would probably be ok with an easy one now. I planned to start my three year old but am seeing that I misjudged how much of me I lost and am not up to it so am looking for somewhere to send him out for starting. I don't think it'll be a good idea for me to ride a greenie even when he comes back. I've always had bad fatigue with any illness and this time it's worse than usual. Riding is energizing for me but since that's not possible with these two, what else should I look at? Other than paleo. Kidney stones suck!



  11. #11
    Join Date
    Dec. 12, 2007
    Posts
    4,043

    Default

    We've removed a couple of recent posts and are allowing this thread to remain open for the time being on the condition that ALL parties, including the OP, avoid getting into the sniping comments exhibited earlier.

    Mod 1


    3 members found this post helpful.

  12. #12
    Join Date
    Jan. 30, 2010
    Location
    Alberta
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    Default

    I would try to find an easy horse to part lease for now. Ideally at a barn where there is a good positive energy, and people you can plan to meet to ride, but that won't judge you if you only end up grooming or walking.

    I have annoying fatigue, and feeling guilty because I don't have the energy to ride as much as I should doesn't help!

    I think a key that I struggle to learn is the cost of over doing it. I have to make sure I self moderate my activities even on days I feel good, so that I can build up a better routine. Far to tempting to take advantage of the good days and do too much.

    Some foods do help. I really like Ensure!
    Freeing worms from cans everywhere!



  13. #13
    Join Date
    Apr. 17, 2002
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    between the barn and the pond
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    Default

    I would suggest editing the title to something related to the real question, like "managing fatigue and battling cancer- ideas??" that may drive people to offer ideas more than 'trying again'.

    I have nothing else to offer but sympathy.


    7 members found this post helpful.

  14. #14
    Join Date
    Aug. 21, 2013
    Location
    always in the barn
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    203

    Default

    I think it's a great idea to put this in a public blog rather than just here. It could be a great way to network with other people who may have the same or similar diagnosis, and support one another. Since it is so rare, you may have a better chance of meeting others who have been through / are going through what you are if you did a public blog rather than sticking to COTH. It would also allow you to be in control completely, journal your experiences, and not have to worry about asking for threads to be locked down or things removed. You'd have the ultimate control over your blog. (Just my thoughts)

    Re: fatigue, I find it next to impossible some days to overcome. I had a few weeks where I was only able to work 10 hours or so, and when home all I did was sleep. I haven't found a fix yet, but sometimes just going out to the barn and grooming the horses picks me up a bit.

    Good luck and I hope you find some peace!



  15. #15
    Join Date
    Oct. 3, 2006
    Location
    Southern NH
    Posts
    175

    Default

    Hi CM,

    I deal with some pretty serious fatigue caused by an autoimmune disease and the medications that I take to manage it. There has been a lot of trial and error, but these are some of the things that have helped me:

    Cutting out sugar and wheat. I know it is the "latest thing", but it did make a difference to me.

    Exercise made the biggest difference in the world. It is also the hardest, most miserable thing to do when you feel like *h$t. Still, the stronger you can make your body, the better you can fight cancer, fatigue, depression, anxiety, everything. Finding something I liked (in addition to riding, of course!) was the key. I learned to love running on trails, despite Hating road running. Lifting weights is amazing as well- not only makes your body strong but makes you feel kind of bad %ss, which never hurts .

    Learning to recognize when you really do need to rest and respecting that. Some days, especially after my methotrexate injections, I just NEED to sleep, and I don't beat myself up over it anymore. Recording patterns in a journal (or blog!!) can help you plan for the days that you will need to take it easy.


    Please consider therapy. You are under so much stress and pressure, and it sounds like you could really benefit from having a kind and neutral person to act as a sounding board. Fatigue is depressions best friend, and when you are sick and scared and anxious, it all goes together. Please talk to someone who can help sort out all of those feelings and provide a compassionate ear as well as direct you towards resources that you may not be aware of. There is no shame in seeking help, especially when you have SO much on your shoulders.



    Wishing you all the best,

    2lula


    2 members found this post helpful.

  16. #16
    Join Date
    Dec. 7, 2001
    Location
    Cullowhere?, NC
    Posts
    8,626

    Default

    Are your two older? Maybe putting one of them back in light work would be just what you need. I was fortunate to have my old reliable when I went thru chemo (radiation didn't wipe me out that much). My other guy, who I was kind of bringing back from a bad past, was pretty difficult at that time; he's a pretty sensitive fellow and I think he knew there was something amiss with me. So maybe not a good time to start a new relationship with a new horse. If you do have to start with a new one, try to make sure it's an old reliable type who can take care of you, not one who will need for you to carry them, if you get what I'm saying.

    Wishing you the best; you've got a difficult road ahead, hope it gets smoother soon.
    "One person's cowboy is another person's blooming idiot" -- katarine

    Spay and neuter. Please.



  17. #17
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    Feb. 8, 2008
    Location
    Delaware Valley
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    Cool Meadows, I'm writing mostly to offer sympathy. I am familiar enough with the medical system to realize that your story has the ring of truth (sadly) and is not unique (even more sadly). I did a little research just now on your type of cancer. I can see how rare and lonely it is (no pink ribbon campaigns) but at least there seem to be other survivors you can connect with and it sounds like you already have. I, for one, hope you will also feel free to continue posting here and will continue to follow your story. (Just ignore the bullies please.)


    4 members found this post helpful.

  18. #18
    Join Date
    Nov. 25, 2001
    Location
    VA
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    A half lease sounds like a good idea. One of mine is 30 with a heart murmur and the other's the three year old. The 30 year old is still sound but I fully retired him 3 years ago. It would just be nice to ride again. I know it would help and I was a decent enough rider that it shouldn't be too hard. The bullies... I realized they must be far worse off than I am to have to sink so low. They have my pity. You're right Discobold, my story isn't that unique and that's horrible. Some of us die waiting and sometimes I wonder if that was the plan all along or if the system is just so inefficient that it barely works.

    My whine of the day: I had this argument recently with someone who paid his dues and finally made it big in the international gp ring. Then he developed cancer and the treatment caused partial loss of vision. Not great for a jumper rider. I asked why he hadn't been more open about what was going on with his health. I told him I'm sure people would've helped if they'd known. He told me he didn't because people still think cancer patients should be ashamed and because people take whatever they can take from you when you're vulnerable. Well, I know he loves to win an argument more than anything, so now I can tell him he was right.

    On a positive note, the punch biopsy showed a benign mole developing in some radiation dermatitis. Bloodwork was a little off which is normal for me but vitamin D was low. Hopefully that explains the exhaustion. I'll try some of the diet suggestions, thanks for the advice and kind words.

    ETA: sorry for the whining. I try to not complain in real life.
    Last edited by CoolMeadows; Sep. 7, 2013 at 07:44 PM. Reason: too much whining



  19. #19
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    Aug. 17, 2006
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    ONTARIO CANADA
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    Hey sometimes ya gotta whine!!! the nasties dont get it and wont until they deal with something akin to it.

    Ahh fatigue, is such a pain!
    Beyond the Ring-para dressage, training, coaching
    www.facebook.com/btrparadressage

    Proud Team Four Star Minion! Renegade for Life!


    3 members found this post helpful.

  20. #20
    Join Date
    Feb. 6, 2003
    Location
    Deep South
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    Default

    Have you checked out this place ? https://secure.healthcentral.com/can...locations.html

    PS; I went through two types of cancer treatment and it effected my thyroid, which caused atypical lethargy. It may be a good idea to get it checked out.
    ... _. ._ .._. .._



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