The Leukemia & Lymphoma Society - Fighting Blood Cancers
54 Replies Latest reply: Sep 18, 2011 2:47 PM by Tex RSS

What Did You Learn?

Tex Registered Users
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Those who survive cacner often call it a "gift."  I think that's because we get a chance to reflect on things and change directions, if we find that appropriate.

 

So, the question for suvivors is this: What did you learn about yourself and about life while you were going through treatment.  If you are going through treatment, are there issues you are dealing with you feel comfortable discussing.

 

There is a follow-up question, too.  What are you doing about it or what so you plan to do about it if you're still in treatment?

 

(Just a note.  I'm playing with the idea of a book.  It will probably never get written but if it does, I'll find some way to acknowledge any ideas conrtibuted and used.)

 

But the book idea is what led me to think we chould be talking about these things.  This isn't mining for information.

 

I'll throw my two-cents in later but I don't want to influence this in any way so I want to see what ya'll have to say.

 

Thanks

  • Re: What Did You Learn?
    Jeri Registered Users
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    I am not sure I would call it a gift, but I've certainly taken a lot from the experiences that I've gone through, both from myself and from John.  I think it has made me a better person, for what it's worth. 

     

    I will have to think about your questions.

     

    Hugs, Jeri

    • Re: What Did You Learn?
      Renalwife Registered Users
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      What have I learned from having the big C?  Patience.  rebellion, anger, acceptance, fright, worry, stoicism, emptiness.

       

      Having survived cervical cancer, then 4 years later uterine cancer, a few skin cancers, I learned acceptance and patience.

      Then I got the dx of CLL.  My God!!! What in the hell was going on?  I was scared!   I was mad!  I was stoic.  I went into denial.  This couldn't be happening to me.  I've been there.  I'm a cancer survivor, not a cancer patient anymore.   It was a year before I returned to the doctor because I thought I was getting the mumps.  No Mrs. M, you have malignant lymph nodes and you need a consultation with a CLL expert. "Well, Mrs. M," says the expert, " you need chemo, but we have to be careful because the CLL has affected your kidneys so you have to see a nephologist."  Well, finally acceptance arrived, and now I just carry one with my life, of course being careful of my renal diet and staying away from obviously ill people.  And my life goes on.   I am happy, don't worry anymore, have my labs every month or so (and a bmb every year).  So now I am basically healthy, my cll and crf is stable.  And I will live to the fullest.

       

      If it had not been for my faith, I probably would have ended it all.

    • Re: What Did You Learn?
      bernadette18 Registered Users
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      I love your answer!

  • Re: What Did You Learn?
    KyGuy Registered Users
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    For me, I wouldn't call it a gift.  If I stub my toe, I may reflect on how it happened and change directions but that's not a gift either.  If it is a gift, I want the receipt so that I can return it.

     

    So what did I learn?  Well, I'm stronger than I ever thought I was.  Putting up with a lot of crap and a lot of pain when we're at our weakest makes us realize how much we can endure.  I've also learned how strong my wife's spirit is.  She hardly left my side and no one was going to do anything to me unless they explained it to her to the nth degree.

     

    I learned a lot about family, friendship, and support.  I've mentioned on here before that I had fantastic support throughout the process.  On this board, I've also learned that sometimes family and friends can't be counted on for support.  Some people have it in them and others don't.  Support comes in all kinds of ways - some people were always there for me in person, others threw money at me, some did small things - one friend took over my son's othodontist appointments, a neighbor showed up a 10:00 at night to shovel my snow (he came that late so we wouldn't know he was there - he forgot about the noise I guess).  The real surprise was with strangers.  When I had my bone marrow donor registration drive, there was a mother and daughter who drove 100 miles to get registered because they heard about it on the radio and their husband/father had died from leukemia.  So the bottom line is that people will surprise you.

     

    Doctors, nurses, PA's, NP's, med techs, etc. care about you.  The head nurse at my doc's recently broke into tears when I was there and finally told me how scared she was when I left for Seattle because she didn't think she'd see me again.  The concern that I've always seen from them meant the world to me.  Unlike you Tex, I have not been able to visit at the hospital - I just can't see myself going back in that wing of the hospital.  However, I've seen a number of my nurses outside of the hospital and they always stop to ask how I'm doing.

     

    I guess the other lesson would be summarized by "don't sweat the small stuff".  Before cancer, I was more driven in my career.  Don't get me wrong, I love what I do and want to exceed in my work.  The change is that if I advance that's fine, but if I don't I doesn't matter as long as I'm doing the best work that I can do and am supporting my family properly.

     

    I think I've learned some self conficence as well.  Knowing that I can get through this has taught me to be tougher and to stand up for myself more.  For example, I always knew I was smart and good looking but now I don't hesitate to point it out to others how drop-dead good looking  I am and how brilliant I am.

     

    What am I doing about it?  I joined the First Connection so that I can share with others to let them know that they can survive this.  I continually try to remind myself of the gift I've been given.  To that end, I try to live my life differently to show my appreciation for the gift and hope that I live it in a way that shows meaning to that gift.

     

    Kelly

  • Re: What Did You Learn?
    paralyzed Registered Users
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    Wow Tex

     

    Great topic!

     

    I will ask Linda. From the caregiver role I've learned that monsters do exist and they are Leukemias and Lymphomas.

     

    I'll let you know what she says.

     

    Jim

  • Re: What Did You Learn?
    Tex Registered Users
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    I was trying to type a note to thank ya'll for what you're writing yesterday when the stinking LLS  server shut down.  So, I'll thank ya'll today.

     

    Thanks.

     

    Please keep contributing.  And discuss with each other.

    • Re: What Did You Learn?
      KyBro. Registered Users
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      The one thing I learned, as a family member, was that there are at least two types of people.  Overwhelmingly, it seems most people are very caring , especially when the chips are down.  I was touched by the people whom I barely knew sometimes who would take the time to follow Kelly's story.  One woman would even email me during my long business trips out of the office to see how he was doing.  And they often really wanted to know all the details of his story.

       

      On the other hand, I guess I was more surprised at the few who fell into the other category.  Many times they were better friends who would end a conversation with a compulsory "Oh, hey, how's your brother doing?"  I quickly learned that they really didn't want to know and that their question was just a substitute for ending a conversation with "well, have a nice day!"  Any answer of longer than 5 seconds would make them visibly uncomfortable.  For those people I developed the response "he's still hanging in there and continuing to fight".  And their response would be something like "that's great...see ya!"  It always amazed me at how superficial their question and my answer were.

       

      Ok, so 95% of people seem to fit into the first category.  Why does it surprise me that there are a few in the second?

       

      -gar

  • Re: What Did You Learn?
    lehrerin Registered Users
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    Tex-I do not have cancer, but my 12 year old child does.....what have I learned in the past 14 months?  I've learned to cherish the time I have-----I no longer work all those extra hours.  These days it is more important to kayak and horse back riding with my daughter!  I've learned that God doesn't make bargains (I WISH I could have cancer so that my daughter didn't have it).....I've learned that cancer doesn't read the textbooks (she has CML-most common in elderly men---only about 40-60 children each year are diagnosed with CML).  I've learned that people will surprise you---in good ways and bad.  I've learned that life is for LIVING.  I've learned that I am stronger than I ever thought I could be (I ran over 9 miles with TEAM in Training to raise money for LLS).   I've learned that clinical psychologists can help the entire family:)      And I've learned that navigating an HMO can be a full-time career.

  • Re: What Did You Learn?
    Rissa Registered Users
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    I'm still very new to all this.  I was diagnosed on April 29, but I have learned a few things.  Right off the bat I lost my sense of ownership.  My clothes, my car, my house, every little "belonging" of mine - doesn't seem like I really own them after all.  I've also learned to be a little more sensitive to those slow drivers who make me late for work.  I was a slow driver yesterday.  My legs hurt so bad and everyone was just zipping by me.  I've learned that some people who look healthy might actually be fighting for their lives.  And I'm sure I'll learn a lot more.

  • Re: What Did You Learn?
    warrior Registered Users
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    Tex,

    Great question It is one I think about a lot. I will give you my impressions and then Kathy’s answer to your  question. The experience of cancer  is very different for the caretaker and the patient. I have learned a lot in the year and 3 months since I have fallen into this world known as blood cancers as the primary caretaker to my beloved partner of 29 years. I would not label cancer a gift. It created an  existential crisis that put me  in touch with mortality and the gift of life. I have learned to value each day as a gift I have come to appreciate the simple daily  aspects of every day life.  The little disturbances of every day life do not bother me much any more. After spending a year focusing on saving a life…I agree with the saying  do not sweat the small stuff. I learned that my sense of humor can get me through very tough times. Not being a parent, I have never devoted myself to some one else’s care for such an extended period of time and I was able to  keep my focus day after day. I discovered that I am capable of making a household work doing every thing that needs to be done.  I discovered that love  and commitment  transcend adversity.  I have come to realize that my work can take a  back seat at times to people I care about and I am committed to.  I have also realized that support can come from unexpected places such as this discussion board.

     

    For Kathy she feels the experience of having AML and going through chemo and an auto sct  has put other challenges in her life into a different perspective. She feels freer to take risks and do hard things because what could be as hard as 5  days of bulsfan and ectoposide?  She is more open to people because they actually came through for her and she trusts me a whole lot more. She also has no desire to radically change her life...guess she has made the right choices with her talents.

  • Re: What Did You Learn?
    NewJez Registered Users
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    I think you learn what's important in your life - and what's just fluff.

     

    You also see those that are your friends, and thos that are just there.

     

    Writing a book is a great way to put things in perspective. It's good for healing too, as I think cancer does scar our souls as well as our bodies. I felt much more at peace after I'd written mine. It was - closure I guess.

    • Re: What Did You Learn?
      Tex Registered Users
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      Thanks for the encouragement, NJ.  I started contemplating writing a book since I was first in the hospital for induction.  I never could get enough material together so it kind of went by the wayside.

       

      I've been needing to do something constructive and I don't know if I'll ever be able to commit to the regular (or irregular in my vocation) schedule of a job.  And I realized I've developed out a lot of ideas here over the years.

       

      What I'm looking for is to write a kind of "how to approach treatment" handbook.  Other books offer everything from miracle cures to how to approach doctors to how to maintain a positive attitude to spiritual devotions.  I'm hoping to help people disarm the whole fear of the word "cancer" and approach this thing with a "get 'r done" attitude.  (If you don't know Larry the Cable Guy over there, you won't get the "get 'r done."  But you can also count yourself terribly blessed. )

       

      To put it another way, Terry Pratchett's Sam Vimes has a simple foundation.  Do the job before you.

       

      I think there's a place for this.  Maybe not.  But at least I'm doing some productive stuff.

      • Re: What Did You Learn?
        Jeri Registered Users
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        . . . and also, I think it's a wonderful idea for you to write a book, Tex!  You've certainly seen it all, both through your experiences and those you've followed on here, and you are smart, funny and kind.  I would buy it !

         

        hugs,

        Jeri

  • Re: What Did You Learn?
    porciniak Registered Users
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    In lieu of a book, dang, how to shorten it without sounding like my favorite coffee commerical "Life's short, Stay Awake", lol

     

    So long I've lived with this and there are so many lessons, some relearned regularly.

     

    Kindness and love are never out of place in any situation and life does not revolve around me or my dis-ease.

    • Re: What Did You Learn?
      Tex Registered Users
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      porciniak wrote:

       

      So long I've lived with this and there are so many lessons, some relearned regularly.

      That's one thing I've noticed.

       

      The very first funeral I did I had just started a small church in a small town just as I was finishing seminary.  I actually assisted the pastor of a church in a larger small town who had been there for years and everyone in my church knew.  It made sense as they didn't really know me from Adam at that point.

       

      As the pastor and I were pulling out of the parking lot on our way to the graveside, I mentioned some members of my church had told me he'd recently been through a cancer scare but was in remission.  We talked about that a moment and he told me that the biggest lesson he'd learned was just the preciousness of each day of life and how he was more alive than before...more grounded and aware of the joy of each moment.

       

      I was really touched and impressed with that and it lived with me awhile.  I didn't see him again for several years.  When I did, I mentioned to him how that comment of his had touched me.

       

      He responded, "Did I say that?  Hmm, I must have forgotten."

       

      Wow.  He encountered the Reaper, got away from it, began to treasure each moment and then let the river of everyday life wash all of that downstream.  Amazing.

       

      I've said before that one of the reasons I stick around here to keep me grounded in the lessons I learned while I was sick.  I've never mentioned the reason that's important to me.  But this story is it.  I don't ever want to ask if I really said that?  I don't want to lose the lessons I won through so much toil.

       

      Nonetheless, I still forget sometimes.  Like you, I have to relearn those lessons regularly.  But as long as I keep learning them, I will live a different and, hopefully, more meaningful life than I was destined towards.  I learned that the most important thing to me is that, when I die, I want to be able to affirm the life I led instead of wishing I'd done things differently.  I live much more deliberately now.

      • Re: What Did You Learn?
        porciniak Registered Users
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        Perhaps some day I'll be able to figure out the Quote thang, ;(

         

        re: Washed downstream

         

        Good analogy, when we're all paddling up as fast as possible; but that is another thing I've learned, one needn't paddle quite so hard.  What will be can't be discerned.

      • Re: What Did You Learn?
        KyGuy Registered Users
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        Tex wrote:


        Nonetheless, I still forget sometimes.

        I don't think that's all bad, in fact it can be good.  It's important for us to live our lives differently since we've been blessed with a second chance.  At the same time, we can still have feelings and thoughts like "normal" people.  We can curse the traffic or the slow cashier just like "normal" people.  I have had times when a slow cashier raised the thought of "maybe she's concerned about a relative with cancer and that's why her mind isn't on her job".  Then again, she just may have been lazy.  Either way, I don't think we have to have this foremost in our thoughts at all times.

         

        Kelly

  • Re: What Did You Learn?
    Jeri Registered Users
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    Hey Tex,

    So here are some of the lessons I've learned along the way from mine and John's cancer journey ~

     

    1.     Expect the unexpected!

    2.     Some people are so amazingly wonderful!

    3.     Some people are not.

    4.     Forgiveness for those who aren't is good for your soul, and it usually means they are blessedly ignorant, which isn't a bad thing.

    5.     Boring, mundane days are AWESOME!

    6.     Sometimes excitement does not come in the form you'd want it to.

    7.     Sometimes it does !

    8.     I don't have as much patience for nonsense.

    9.     There's a LOT of nonsense in this world.

    10.     I am stronger and braver than I ever knew!

    11.     My husband is too!

    12.     My kids are very resilient.

    13.     I am blessed far more than perhaps I would have ever realized.

    14.     Life is good and precious and joyful!

     

    It's a continuing process, as you well know . . .

     

    Hugs,

    Jeri

    • Re: What Did You Learn?
      Tex Registered Users
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      Good insights, Jer.  Some brought a smile and some got a happy chuckle.  All are true.

       

      Thanks

    • Re: What Did You Learn?
      paul_rheaume Registered Users
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      Jeri wrote:

       

      8.     I don't have as much patience for nonsense.

      9.     There's a LOT of nonsense in this world.

       

      I would add:

      I am better at ignoring the nonsense.
  • Re: What Did You Learn?
    Toddmtedder Registered Users
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    I've learned many things.  Too numerous to count.  Not all are good, but not all are bad.  I think everyone's experience is different and I can see where you need differerent life experiences and stories.

    1.  I've learned that miracles do happen and that God is an almighty and powerful God.  Several times he could have called me home, but he let me stay here.  Maybe God gave me my affliction to better understand his will.  He taught me to start looking at things with him at the center.

    2.  There are some good people in this world.  Sometimes you don't see it until you face a trial like cancer.  To prayers, meals and flowers, to a simple hug or a patting of the hand.  Sometimes a shoulder to cry on is the best medicine.  They taught me that good friends are valuable and rare.

    3.  There are some bad people in this world.  There are those that will drag you down when you are at your lowest point battling an awful disease.  There were no telling how many people that spread gossip and rumors when they where too afraid or too lazy to seek the truth.  They taught me to pray for those that try to bring you down.

    4.  I had childhood leukemia.  Some of the kids that supported me are still my friends.  Then there were others that would make fun of me because I had no hair or because I appeared fat due to the steroids the doctors were giving me.  Many came back later and apologized.  It's easy to forgive, but I still have a hard time forgetting.  They taught me the cruel lesson of human nature at an early age.

    5.  I learned that I was fortunate.  You make friends with the kids that you go to the clinic with.  A lot of us even went to summer camp together.  There were fun times.  There was also bad times.  You would come into clinic for the month and someone you had played with or talked to wasn't there anymore.  You could see the pain in the eyes when this happened.  They showed me to look beyond the appearance and look at the heart.

    6.  Even though it seemed like I hated my doctors and oncologists then, it was only because I associated them with pain.  I later grew to love these people because they committed their lives trying to save the lives of hundreds, if not thousands of kids with cancer.  I think of them often.  I had a female doctor.  I thought it was strange because all I had ever known was male doctors.  Her name was Daisy Berry.  Years later, when it got time to release me, I asked her why she seemed so mean and unlikeable.  She told me that she couldn't show how she felt because she never knew when she might lose a patient, but that she loved us all.  They showed me that first impressions aren't always the right ones.

    7.  I learned that my parents were strong people.  I've never seen so much thrown onto a group of people.  I never once heard them complain.  They accepted it and done what they could.  Now that I'm a parent, I can only realize what they went through.  Not only with me, but with my brother that they lost in 2001 to MD.  They showed me how to love as a parent.

    8.  I've just gotten to where I feel comfortable talking about my experience with leukemia.  And I was diagnosed 31 years ago.  I used to be embarassed and ashamed of my past.  It wasn't easy and not only did it stick in my mind, it stuck in the mind of others.  Some of the elders in the community where I was raised still refer to me as the little boy who had cancer.  I've gotten over this and realized that I can share something few people can.  I'm a survivor and if I can live through leukemia, I can do just about anything I want to do.  This showed me how to embrace the thing that almost killed me.

    • Re: What Did You Learn?
      Tex Registered Users
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      Thanks for your reply.  It's good anf interesting to get the input from someone who had to deal with this as a child.  I can't imagine starting your life, more or less, with this crap.  At least as an asult one has experience of happy life, memories to fall back on, and an understanding this isn't life but an interruption.

       

      I am a Christian and disagree with your thoughts about God's role in this, especially the idea that our loving God could have possibly given this to you, one of God's childrem.  But that's not here nor there.  Your personal beliefs are yours.

       

      I do want to share a thought with you that was shared with me once.  I can't remember who it was but I was going through the I can forgive but not forget thoughts you're sharing.  My friend said that it had occured to him over the years that, "Forgiving is forgetting."  I still struggle with that.  But it seems the essence of forgiveness.

       

      Anyway, thanks for sharing your lessons learned.

      • Re: What Did You Learn?
        Toddmtedder Registered Users
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        It isn't easy and I'm still learning 31 years later.  One thing that was a huge postive was that it led my Dad to Christ and he is still very active in his church.  I've also used it as a way to witness to others. 

         

        Message was edited by: Toddmtedder

  • Re: What Did You Learn?
    Renalwife Registered Users
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    I have not been through all the treatment process a the rest of you except for a clinical trial once 6 years ago.  Initial diagnosis was 2002 .  CLL has not interfered with my life style except for some fatigue that is remedied with naps throughout the day.  At night my sleep is interrupted with night sweats., so much so that I have to sleep on a beach towel and change my nightie a couple of times during the night.  I also have a portable fan going most of the night.  Iron deficiency is treated with oral iron.  The CLL has affected my kidneys.  At the present time I am at a stage 4.kidney failure....with stage 5 being end-stage kidney failure.

     

    This is just my experience:   And it is the truth.  My family and my friends do not give a damn.  Get well already.  We don't want to hear about what you can't eat,. we don't want to hear about your so-called leukemia.  I was on a clinical trial and no-one was interested.  I have been told that "No-one is interested in these afflictions.  They have worse troubles of their own.  Like Don has gophers in his back lawn.  And Joyce has to change schools because she doesn't like the teachers at her present one." (she is in the third grade).

    Sounds depressing, but really, it isn't.  Chronic diseases are not dramatic.  They are quite boring.  No action can be taken.  Not like getting rid of pests gophers, which make for a humorous conversion or berating the inefficient school system.

     

     

    As for religion:  The thought of our Lord giving me these afflictions as a test of faith or to make my faith stronger has never entered my mind.

     

    My thoughts are:  if you live long enough you either had it, you have it or you are going to get it.  Whatever "It" is.

    • Re: What Did You Learn?
      Tex Registered Users
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      You know, I've had crappy health ever since I hit my mid 40s.  About six months before my AML dx my ex-DIL (thank God) chewed me out about how my health issues had dominated every recent bisit we'd had.

       

      Boy, was she mollified when I was dx'd.  She was so stunned, contrite and scared I really should have taken advantage and jerked her chains.  But, I was just through my chemo.  Just didn't have the creativity to figure out how to abuse her properly.

       

      My granddaughter (her daughter) is the only person who wants to discuss my Celiac's with me these days.  And that's just to shriek (she is her mother's daughter) at me when I blow it off and eat some of her pizza (with wheat).

       

      Thanks for the reply.

      • Re: What Did You Learn?
        KyBro. Registered Users
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        I thought of another thing that I learned, that I should mention.  The education came long before Kelly went to SCT, and so I've taken it for granted now.  At that point I don't even think he was on these forums yet and I was just trying to get an understanding of what he was facing and what the options might be.  There was a thread on there with the title of something like, "What was the dumbest thing anyone ever said to you during the process?"

         

        One woman I remember said that her pregnant sister, an RN, said that although she knew leukemia wasn't contagious that she wanted to keep her distance because of the pregnancy!

         

        What I remember more though is one person saying, and then so many others agreeing, that the dumbest thing was that friends and family members afterwards said something to them like "Ok, isn't about time you put this behind you and start getting back to normal?"  It's not too different from what I've read from many of you here and what I see as a recurring theme all the time on these forums.

         

        The reason I wanted to mention it is because, although Kelly hadn't even had his SCT then and I'm not sure it was even planned at that point, I could see myself someday down the road having said something similar to him, and so it was very educational for me.  It's not that I'm unfeeling or a total jerk (at least not in this case), but it's just that I was at that point uneducated.  Of course as older brother (just slightly older, but so much wiser) it's my responsibility to make sure that my little brother doesn't totally wimp out, and be too easy on himself.

         

        As I read some of your experiences I'm thinking that some of what you're experiencing in others' reactions may just be more a lack of understanding of leukemia and the transplant affects, rather than being totally unfeeling.  Certainly, someone implying that having gophers in the yard is more serious than a battle against leukemia is not reasonable, but on the other hand most people aren't educated to realize that the fatigue would go on for many months, and sometimes beyond, and that even when someone looks relatively healthy they may be dealing with underlying GVHD that isn't readily apparent and that these issues can go on indefinitely.

         

        -gar

        • Re: What Did You Learn?
          Tex Registered Users
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          KyBro. wrote:

           

          Of course as older brother (just slightly older, but so much wiser) it's my responsibility to make sure that my little brother doesn't totally wimp out, and be too easy on himself.

          I know you're just continuing to be a responsible big brother by being an obonoxious ass about that.   However, my big brother died before I was born and I've spent my life wishing I could have had him around to be a friend, companion and guardian.  Of course, since we weren't a large family, I might owe my very existance to his early checkout.  Still...

           

          Man, I'm feeling melancholy today.

           

          Good insights.  Thanks for sharing them.

          • Re: What Did You Learn?
            KyBro. Registered Users
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            Tex wrote:

            I know you're just continuing to be a responsible big brother by being an obonoxious ass about that.   However, my big brother died before I was born and I've spent my life wishing I could have had him around to be a friend, companion and guardian.  Of course, since we weren't a large family, I might owe my very existance to his early checkout.  Still...

            Yes, but that's an obnoxious ass with love!

             

            Tex, I think you know that Kelly and I were in a family of 6 siblings, and we're lucky enough to still have our 90 year old parents still around.  While I took it for granted when I was younger, I guess I realize more and more how fortunate we are to have had such a close and loving family, and extended family - probably never more so than during Kelly's battles.

             

            On the other hand, I'm feeling bad that you are feeling like you are missing out.  I know you have a sister, but I have siblings to spare and would be willing to part with one for the right price.  The sisters unfortunately are all older, but come in small, medium and large.  The brothers are both younger and come in a ridiculously giraffe-like model and then a more compact girlie-body one.  I can provide over-night shipping and easy credit terms.  Send for my free catalog!

             

            -gar

            • Re: What Did You Learn?
              Tex Registered Users
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              I'll trade you my sister for a brother even money.  She's a breeder.

               

              Oh, what the hell, take her off my hands and I'll pay you.

              • Re: What Did You Learn?
                KyGuy Registered Users
                Currently Being Moderated

                Um, I hate to interrupt your sales negotiations but I'm not for sale - and I'm the most normal one in the family.  And just for the record, I'm not the compact one with the girlie body - I'm the giraffe.  I'm really feeling like a giraffe this week since I'm in Costa Rica amoung these pint-size Hispanics (super nice people though).

                 

                Kelly

                • Re: What Did You Learn?
                  Tex Registered Users
                  Currently Being Moderated

                  KyGuy wrote:

                   

                  I'm the most normal one in the family.

                   

                  Oh, well, all deals are off, then.  It never occured to me we were negotiating for you, anyway.  Isn't there a third brother?  Tell me about him.

                   

                  Whatcha doin' in Costa Rica?

                  • Re: What Did You Learn?
                    KyGuy Registered Users
                    Currently Being Moderated

                    Tex wrote:

                     

                     

                    Whatcha doin' in Costa Rica?

                    Working.  I've been working with the group down here for a while and they finally invited me.  It's been a great trip - they treated me too well and we made a ton of progress at work.  Tomorrow I'm going to the rainforest.  The day starts with a canopy tour - not sure if it's a tram ride or a zip line.  After lunch we go white water rafting.  It's one of those times I'm sooooo happy for my transplant.  I'll be going home on Sunday.

                     

                    Kelly

                    • Re: What Did You Learn?
                      Tex Registered Users
                      Currently Being Moderated

                      Zipline?  Don't think I'd want to try one of those with my osteopenia.

                       

                      It sounds like a ton of fun.  Take pictures and post them on this forum.

                       

                      Have fun and good luck with the zip!

                      • Re: What Did You Learn?
                        Jeri Registered Users
                        Currently Being Moderated

                        I had to tell you this one, Tex.  Yesterday John and I were signing papers for a big naughty purchase, and we were carrying on laughing and being silly.  The woman there asked us if we were newlyweds.  She was enthralled that we liked each other so much.  So we got home and I said to John should we tell her our secret ~ the secret being that cancer has made us appreciate each other so much more.  Kind of sad I guess in a way, but I am grateful for that result of it all.  It's funny, but we have so much more fun than we used to, and I really love that about us now!

                         

                        Hugs, Jeri

      • Re: What Did You Learn?
        paul_rheaume Registered Users
        Currently Being Moderated

        Tex wrote:

         

        Boy, was she mollified when I was dx'd.  She was so stunned, contrite and scared I really should have taken advantage and jerked her chains.  But, I was just through my chemo.  Just didn't have the creativity to figure out how to abuse her properly.

         

         

        Maybe you just didn't care enough anymore to waste any time on her.

         

        I have had some serious issues with my brother for a long time and since being dx'd these issues just don't seem to matter. The issues have not gone away, I just don't think about the issues anymore. He and his wife just got seperated and I essentially told them both that I couldn't care less and not to bother me with this.

         

        My first priority is to get better and enjoy the rest of my life. Besides my wife, familly and friends in good standing, nothing else matters.

        • Re: What Did You Learn?
          Tex Registered Users
          Currently Being Moderated

          Makes sense.  Acutally, I did still care about torturing her.  I just didn't have the energy or mind to be creative enough to think of anything worhty of me.

  • Re: What Did You Learn?
    bernadette18 Registered Users
    Currently Being Moderated

    Hi Tex!

     

    I just want to thank you for always being so active and for replying to my post a year ago when my boyfriend was diagnosed with AML M4! I can tell you that the cancer was an absolute gift of grace from God for my bf and for his close family and friends around him. He actually thanked God for giving it to him and when he fell out of remission this March he knew how much God loves him for giving him this ultimate wake up call. The cancer brought him and myself closer to the Lord, to each other, mended friendships, brought him and his family closer and also showed us how caring a lot of people in our lives really are. He just received his BMT and we still don't know what God has planned for him, but we definitely have left it in His hands and whether my boyfriend lives for another year or 40 years, I will absolutely enjoy each and every moment with him! -- we plan on getting married next year BTW! --

     

    In Christ's Love,

    Bernadette

    • Re: What Did You Learn?
      Tex Registered Users
      Currently Being Moderated

      I don't believe God works that way,  God didn't give this to me.  God's grace was in helping me to find some kernel of good in even the very worst, not in nearly killing me.

       

      I'm glad your boyfriend is doing well.  Hope his recovery goes smoothly.

  • Re: What Did You Learn?
    Toddmtedder Registered Users
    Currently Being Moderated

    Each case is different.  This journey through this disease can be defined in so many ways.  There's not a day that goes by that I don't think about what I went through.  That's what I like about this board.  I can talk to my wife, friends and family about it, but they don't wholly understand because they were there with me through it, but they didn't have to suffer through it.  I lost my childhood.  My wife will ask me something like did you play little league baseball?  I'll tell her no because I had to stay indoors or if I got released to go outside, I couldn't do anything.  It was different for me.  I thank God that I'm now healthy and able to live my childhood through my kids. 

  • Re: What Did You Learn?
    KimV. Registered Users
    Currently Being Moderated

    Gosh, what DIDN'T I learn.  Prior to AML & BMT I had "to-do" lists a mile long, and I was always going, going, going.  Now I have days where I struggle with extreme fatigue (my new normal??) and my world comes to a halt until I feel better, by necessity.  If I push myself on one of "those days", I pay for it later.  So now I have "to-don't" lists.  One of the many things I have learned is that nothing in life is written in stone, nor should it be.  No task is worth getting sick over.  I have a greater appreciation for what they call the "little things" in life.  And when life's problems & little inconvieniences crop up, which they inevitably do, I realize that ultimately in the greater sceme of things, they aren't that important.

    • Re: What Did You Learn?
      Tex Registered Users
      Currently Being Moderated

      Thanks for sharing that, Kim.  I hope you never lose the new perspective.

       

      As for fatigue, it does come and go (or had batter and worse days, anyway).  And some people do get past it.  Give it time.

      • Re: What Did You Learn?
        irishbechmom Registered Users
        Currently Being Moderated

        Hi Tex, I was just reading the posts from the begining. I wanted to say thank you.  I am not very consistently here and most of time I just see if anything new. but I do usually read you.  I read this question and was thinking then I read your story and realized that I had become like that man.  I forget to live and get back to survival mode.  Thanks for reminding me to appreciate every day even those where everything goes wrong and you have a tond of potholes and detours to take.  Sorry started to ramble.  But Tex THANK YOU FOR THE MEMORY.

        • Re: What Did You Learn?
          Tex Registered Users
          Currently Being Moderated

          And thanks for the thanks.

           

          Rambling is allowed, if you're so inclined.

           

          Blessings

          • Re: What Did You Learn?
            porciniak Registered Users
            Currently Being Moderated

            Hello Hello,

             

            Well, Thanks to All, reread the whole thread tonight.  Words of wisdom are good to read over, eh?  And, I chuckled at Ky's brother auctioning off a sib or two, Tex giving his away   I've one to give away too, hard worker, good manager, we just don't click.  And feeling that more acutely now that my dear brother passed.  Dang.

             

            It's good to be reminded off all I've learned    Thanks again. dj

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