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  1. #1
    Join Date
    Feb. 16, 2007
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    My very own sliver of heaven.
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    1,307

    Default 10,000 Miles

    By Mary Chapin Carpenter. That is the song I decided will be played at my funeral.

    I had a bone marrow biopsy last week and will get the final results on Friday, but the initial diagnosis was not good. After a very difficult, tearful conversation with my mom, we've decided to make an appointment with our family's estate attorney to draw up my will, set up a trust for my animals, and - the worst part - discuss my wishes for my final arrangements. I'm still several years away from 30.

    It's not that there isn't a chance I'll make it through this; it's just that the chance is about 50/50; 70/30 if I go a different treatment route which has less chance at remission. Like I said, I won't know until Friday. So I've spent the last few days thinking about what my wishes actually may be which hasn't been helping my outlook much.

    "How can you conceive your friends will be grieving for you?" is a line from a song I've been listening to on repeat. And at my age? It really is beyond comprehension. I have so many plans and so many things that I'm looking forward to doing that require time and health; two things that I may not have.

    I've tried to be rational about the whole process; after all, I could take a fall off my horse or get in a car accident tomorrow and having those plans in place would be just as necessary. I try to tell myself that I'm doing something responsible, not morbid. But it's hard. It's damned hard.

    I don't mean to be such a Debbie Downer, but I really can't talk about this with anyone close to me; it's too hard for them. Every time I try, people start crying and then I just feel terrible. And my therapist is on vacation until Monday...I just had to put it down somewhere, because having this rattle around in my head isn't doing me a lick of good.
    Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.



  2. #2
    Join Date
    Mar. 1, 2003
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    Happily in Canada
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    4,939

    Default

    Virtual hugs. Sorry you are going through this. If you can't talk to anyone, can you go spend some time with your horse? They are usually pretty good listeners.
    Blugal

    You never know what kind of obsessive compulsive crazy person you are until another person imitates your behaviour at a three-day. --Gry2Yng


    2 members found this post helpful.

  3. #3
    Join Date
    Apr. 1, 2008
    Posts
    4,538

    Default

    Here is a good place to set it down. I am not young, as you are, but I do not think it morbid. I hope that Friday brings you far better news than you are thinking it will.

    Please let us know what happens.


    3 members found this post helpful.

  4. #4
    Join Date
    Apr. 20, 2006
    Location
    Between a rock and a hard place, WA
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    1,341

    Default

    What a terrible thing to be going through. I will hope and pray that the results are better than the initial diagnosis.

    I have one thought about one of the things you said: even if your friends and family get emotional when talking about this, both you and they need to find a way to cope with the situation and talking about it is one of those ways. You shouldn't feel terrible about it - it's a major emotional trauma for everyone.

    In addition, it is most important to have professional help - does your therapist have a stand-in while he/she is on vacation?

    Also, I think it is very wise that you make a will - then, once it is done, we'll all hope that you won't need to use it for a very long time.

    I wish I could think of something insightful or wise, but just am not coming up with anything - I'm sure you will get some good support here.

    Edited to add: I love Mary Chapin Carpenter - not familiar with that particular song, but she gets it really right a lot of times.
    www.moranequinephoto.com
    "If I am fool, it is, at least, a doubting one; and I envy no one the certainty of his self-approved wisdom."
    Byron


    1 members found this post helpful.

  5. #5
    Join Date
    Jul. 2, 2003
    Location
    Woodland, Ca
    Posts
    6,220

    Default

    It's always good to have a will and an estate plan. It isn't morbid, it's smart. No one wants to think about dieing, but we'll all do it eventually, and it almost always comes too soon... that said, when you get better don't forget to update the plan from time to time... don't forget, you may just live.


    2 members found this post helpful.

  6. #6
    Join Date
    Apr. 11, 2006
    Location
    Southern Ontario
    Posts
    1,118

    Default

    Nothing to say but that I am thinking of you and the heavy load you are carrying at such a young age. I hope that Friday brings you and your family the best news possible. Keep us updated...

    (((hugs)))


    4 members found this post helpful.

  7. #7
    Join Date
    Jul. 22, 2012
    Location
    CA
    Posts
    820

    Default

    Many, many hugs and jingles. It is always good to have those plans and papers in place. Trust me, it is hell to attempt to sort through such business after a loved one has passed without a will or plan. Try not to think of it as morbid. I like to think that it is ensuring my peace of mind...even if I die tomorrow, my horse and my belongings all have a safe place and my wishes are known.

    It's necessary to cry about something like this. Don't feel horrible. Have that conversation, and get it all out while you can. You'll all be the better for it.

    Once again, many hugs and jingles...you'll be in my thoughts. Please do update us.



  8. #8
    Join Date
    May. 4, 2008
    Location
    Virginia
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    1,323

    Default

    I'm so sorry for your pain, fear and confusion. It is hard to discuss with family, I hope you can get through it with minimal suffering on everyone's part. I hope that you get good news on Friday, and things look brighter by the weekend. I, too, have a 50/50 diagnosis altho for me that is at the 5-7 year range. I have not frankly discussed that with my husband or my kids, just quietly gone about setting up arrangements for my family should I be no longer here. I pray you the strength to discuss it with yours when it is time. Most of all I pray you find you don't need to have the conversation at all and your news is good news.
    Sorry to see xtranormal is gone
    For funnies, search youtube for horseyninjawarrior!

    Www.caringbridge.org/visit/mysecretgarden


    4 members found this post helpful.

  9. #9
    Join Date
    Nov. 20, 2010
    Location
    Upstate New York
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    Default

    Punkie - So sorry to hear about this burden you are facing. ((Hugs)) from me as well.

    I think sometimes the one with the burden, has to be/is the one with the strength. Your future is out of the hands of so many who love and care for you, and it is frightening. Here's hoping that once the shock is realized, that they step up and stand by your side. Don't feel guilty! Know they'll have a reaction, but share what you can of yourself as well.

    Hope the results are exceptional.

    And, alittlegray, thinking of you as well. Positive thoughts going out to both of you.
    Being right half the time beats being half-right all the time. Malcolm Forbes


    1 members found this post helpful.

  10. #10
    Join Date
    Nov. 13, 2004
    Location
    City of delusion in the state of total denial
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    8,575

    Default

    Punkie, I will keep you in my thoughts, and hope the outcome is better than expected.
    "I'm not always sarcastic. Sometimes I'm asleep."
    - Harry Dresden

    Horse Isle 2: Legend of the Esrohs LifeCycle Breeding and competition MMORPG



  11. #11
    Join Date
    Aug. 22, 2000
    Location
    CT
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    2,441

    Default

    So sorry you are having to face this. I will point out that from a practical standpoint, you don't have to figure out your estate right now. Even if things are bad for you, you will have time to deal with it. Some people feel more settled and secure knowing that they have settled these things. If that is the case for you, then go ahead. Other people are more depressed and lose hope if they deal with these matters too soon. If that is you, then wait a while. Waiting until you know the whole story and the path you have chosen may be a little less stressful.

    I think telling other people and dealing with their reactions is one of the most difficult things. Try to find someone - in your family or a friend - who can spread any news for you outside the immediate family. I did this for my mom and it took a lot of stress off of her. I am so glad that you have a therapist to help you, even if s/he takes inopportune vacations.

    Now for one of those annoying positive stories:
    I was diagnosed with a chemo and radiation resistant cancer. If surgery didnt take care of it, there were not good options left. Looking at the literature at the time, the overall survival rate five years from diagnosis was 10% I was fortunate that mine was caught early and removed with clear margins. That improved my odds to 50-50.
    That was seven years ago. Obviously I have survived. And I have been cancer-free. It took a while to stop dwelling on the what-ifs and the morbid thoughts. But life can go on! Somebody has to be on the positive side of the statistics!


    Please take care of yourself. Vent here. Ride horses when you can. Cry when you need to. Laugh when you can. Talk to your therapist and to anyone else that helps.


    13 members found this post helpful.

  12. #12
    Join Date
    Oct. 16, 2006
    Posts
    835

    Default

    Dear Punkie,

    I remember your post from last OT day.

    I've discussed your situation/diagnosis with some of my friends. We are nurses and while we don't have a solution, we are thinking of you. You sharing your story helps us become better informed care takers, so thank you.

    I applaud you for trying to tackle some of the most difficult decisions head on. I truly believe that being prepared does help make a challenging time more bearable. I do not feel that what you are doing is morbid in the least. As a mother, I can tell you that while I am sure that it is incredibly difficult for your mom to watch you wrestle with illness and the possibility of death, following your wishes is something she can do even if she can't cure you (which is what she really wants).

    I also hope that the news you receive is better than expected.

    I hope to read a post by you on this board in ten years counseling another person about how you beat the odds.

    I hope you have a weekend filled with love and laughter.

    We are here for you if you needs us.


    13 members found this post helpful.

  13. #13
    Join Date
    Sep. 13, 2000
    Location
    Greenville, MI,
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    11,944

    Default

    I have no words, just my thoughts and prayers.
    Praying for a good result on friday. Sending many hugs as well!
    "you can only ride the drama llama so hard before it decides to spit in your face." ?Caffeinated.



  14. #14
    Join Date
    Feb. 16, 2007
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    My very own sliver of heaven.
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    Default

    Thank you, everyone. So much.

    Alittlegray, huge hugs to you. I can't begin to imagine how I would handle all of this with a family of my own. I am thinking of you and hoping for the very best!

    It's not so much that I can't talk to my friends and family about being sick, it's more that I can't talk to them about the prospect of actually dying. I've been sick for a very long time; this is just the first time that my survival has seriously come into question and I think that's what makes this so hard. They've all seen me fight and pull through over and over again (I survived two bouts of septicemia back to back with partial organ failure and - at one point - a blood pressure of 40/20...while I was still talking to the nurses) so to hear that this may not be possible is a shock, I think.

    For today, I am going to enjoy spending an alternative Thanksgiving with one of my very dearest friends in Cocoa Beach. For today, I'm not going to be sick. For today, I'm not going to worry about tomorrow or a year from now. Instead, I'm going to focus on having an incredible day with someone I care about very much and making this the best day I can possibly have.

    Happy Thanksgiving, everyone!
    Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.


    19 members found this post helpful.

  15. #15
    Join Date
    Jan. 14, 2003
    Location
    Massachusetts
    Posts
    5,840

    Default

    Wow. I can't imagine having do deal with this stuff, especially in my 20's. OP, my thoughts are with you. I hope the final diagnosis is not as dire as you fear and if it is then I wish you strength and courage as you fight it with all you have.



  16. #16
    Join Date
    Aug. 23, 2006
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    1,757

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    Quote Originally Posted by MsM View Post
    ... life can go on! Somebody has to be on the positive side of the statistics!
    MsM - congratulations on being cancer-free. I LOVE what your wrote (quoted above). This has to be one of the most powerful thoughts to hold on to! They say that just thinking positive thoughts (and believing them, as hard as that is to do sometimes) is so important in our lives. This little sentence says it all - don't think of the glass half empty - *believe* that the glass is half full.

    ****(Somebody has to be on the positive side of the statistics!). ****

    Punkie, I pray that you will get a "good" report on Friday and also that you will finally get the *right* answers on how to move forward and beat these horrible problems that you've been dealt. You are an inspiration for the way you're handling what no one should have to handle, and for your sheer perserverence though it all.


    2 members found this post helpful.

  17. #17
    Join Date
    Nov. 12, 2009
    Location
    New England
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    1,370

    Default

    Quote Originally Posted by Punkie View Post
    Thank you, everyone. So much.

    Alittlegray, huge hugs to you. I can't begin to imagine how I would handle all of this with a family of my own. I am thinking of you and hoping for the very best!

    It's not so much that I can't talk to my friends and family about being sick, it's more that I can't talk to them about the prospect of actually dying. I've been sick for a very long time; this is just the first time that my survival has seriously come into question and I think that's what makes this so hard. They've all seen me fight and pull through over and over again (I survived two bouts of septicemia back to back with partial organ failure and - at one point - a blood pressure of 40/20...while I was still talking to the nurses) so to hear that this may not be possible is a shock, I think.

    For today, I am going to enjoy spending an alternative Thanksgiving with one of my very dearest friends in Cocoa Beach. For today, I'm not going to be sick. For today, I'm not going to worry about tomorrow or a year from now. Instead, I'm going to focus on having an incredible day with someone I care about very much and making this the best day I can possibly have.

    Happy Thanksgiving, everyone!
    You are amazing for keeping such a rational mindset and making a plan. I can't even imagine what you are going through.

    Living day-to-day like it's your last day makes me realize that I should get a reality check. I could have a car accident, a stroke, trampled by one of my horses or bad news from my doctor.

    Taking care of "stuff" before just makes sense, because we all aren't invincible, no matter what we think.

    Have a great Thanksgiving - my thoughts are with you. Just enjoy your day!

    BTW - That song is a perfect choice. Love MCC.



  18. #18
    Join Date
    Mar. 8, 2004
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    Baltimore, MD
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    Default

    Jingles for both of you. Even though I am a bit disillusioned with COTH at the moment I am still a big believer in COTH jingles and pray they do the trick for you both.


    2 members found this post helpful.

  19. #19
    Join Date
    Jul. 22, 2008
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    Rochester, NY
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    Default

    And Happy Thanksgiving to you as well Punkie.

    Everyone else took care of all the wise & sage advice. Hugs and big happy positive thoughts and jingles. I hope you have a great time at Cocoa Beach today.
    bar.ka think u al.l. susp.ect
    free bar.ka and tidy rabbit



  20. #20
    Join Date
    Nov. 1, 2007
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    ....in a classroom in Fl, by the ocean
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    3,841

    Default

    you will survive this....you will survive this.....you will survive this....you will survive this.....this is your new mantra....I will survive this,.....I WILL survive this.....I WILL SURVIVE this......I WILL SURVIVE THIS!


    The power of positive thinking/prayer/whatever you want to call it, is a powerful thing. Sending it out into the universe is important. You now have hundreds of CoTHers pulling for you.


    You WILL survive this!


    2 members found this post helpful.

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