The Leukemia & Lymphoma Society - Fighting Blood Cancers
61 Replies Latest reply: Jul 19, 2012 11:35 AM by Tex RSS

2,922

Tex Registered Users
Currently Being Moderated

That's how many days I've been around since my Transplant eight years ago this morning at 12:30 am PDT.  I figure at least 2,600 of those are past the day my AML would have forced my exit from Planet Earth.  And I'm far, far away from wanting to bow out, gracefully or otherwise.

 

It's overwhelming to think about it and absolutely amazing.

 

So many people made it possible for me, not a king or anyone important as the world counts importance.  I think that's beautiful how many of us "norms" are able to avail ourselves of such incredible magic and science.

 

I guess today, while I'm always so grateful to my donor, I'm thinking of all the people who went before me, giving up their lives on this strange and risky procedure which ultimately gave me life.  We are truly standing on the shoulders of giants.

 

Thanks to all of you for giving me a place and a voice to process this wonder over these precious days.

 

Blessings

  • Re: 2,922
    DebbieW Registered Users
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    What a great number and something wonderful to celebrate!!!

     

    Thank you for being there to support so many people as they go through this difficult journey.

     

       

    • Re: 2,922
      tadly Registered Users
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      What a great day and way to mark what your path has been.  You've expressed yourself and your experience with humor and grace and fine pieces of knowledge and compassioned support.

  • Re: 2,922
    Sbega Registered Users
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    Hi Tex,

     

    I am new to this group as of today.

     

    I have a diagnosis of NHL with involvement in bone marrow and spinal fluid. It is stage 4 and I have had  4 treatments out of 6 -R-CHOP.  I have treatment of spinal fluid in addition and because so much in spinal fluid, my doctor is thinking of bone marrow transplant. I am scared!  What would it be like?

     

    Susan

    • Re: 2,922
      Tex Registered Users
      Currently Being Moderated

      Sbega wrote:


      What would it be like?

       

      It is scary to think about and some folks have a really rough time with it.  There's no telling how an individual will respond until they go through it.

       

      But there are those 2,500 or so days I've been around that I most likely wouldn't have been without the transplant.  That's what we all bet on.

       

      Thanks to you and everyone for your comments and support.

       

      Blessings

  • Re: 2,922
    warrior Registered Users
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    Tex

    Did you count 2 days for leap years? CONGRATULATIONS!!!!! Thanks for all your support and humor...

    • Re: 2,922
      Tex Registered Users
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      warrior wrote:

       

      Did you count 2 days for leap years?

       

      Yep.  That's how it turned out to be 22 at the end.  Multiples of five end in five or zero.  You're a scientist, you should know that.

      • Re: 2,922
        warrior Registered Users
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        just trying to be  a wise -ass did not bother to do the math.....

        hope you celebrated last night

        • Re: 2,922
          Tex Registered Users
          Currently Being Moderated

          warrior wrote:

           

          just trying to be  a wise -ass

           

          With me?!  Do I try to do science around you? 

          • Re: 2,922
            warrior Registered Users
            Currently Being Moderated

            who said the 2 were mutually exclusive?

            • Re: 2,922
              Tex Registered Users
              Currently Being Moderated

              warrior wrote:

               

              who said the 2 were mutually exclusive?

               

              I'm just saying I wouldn't challenge Kevin Durant to a dunking contest, unless we're talking donuts and coffee.  You gotta work up to these things.

              • Re: 2,922
                KyGuy Registered Users
                Currently Being Moderated

                I was interrupted when I was writing my post yesterday - those stupid people expect me to work when I'm at work.

                 

                Anyway, we're all fortunate to have your counsel on this site.  I really appreciate your support when I relapsed last year.  This site is definitely your calling.

                 

                Take care,

                Kelly

                • Re: 2,922
                  Tex Registered Users
                  Currently Being Moderated

                  Aw, shucks, Kelly.  It's nice to have the respect of one's peers.  It's nice to have you and Diane as co-"coaches" around here.

                   

                  Thanks

              • Re: 2,922
                warrior Registered Users
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                You know being out of my league has never stopped me. I once challenged Larry Bird to a game of one on one....always an optimist and  not much of a realist

                • Re: 2,922
                  Tex Registered Users
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                  warrior wrote:

                   

                  I once challenged Larry Bird to a game of one on one

                   

                  Cut to the chase!  Did he accept?  Or were you just yelling from the bleachers?

                  • Re: 2,922
                    warrior Registered Users
                    Currently Being Moderated

                    When I was a post-doc at Brandeis U the Celtics practiced in the gym... I was leaving for the lab after a morning work out and he was coming to practice he just laughed and shook his head

                    so never afraid to play out of my league

                    • Re: 2,922
                      Tex Registered Users
                      Currently Being Moderated

                      warrior wrote:

                       

                      When I was a post-doc at Brandeis

                       

                      This comes as quite a surprise.  I had no idea posts even needed docs.

                      • Re: 2,922
                        KyGuy Registered Users
                        Currently Being Moderated

                        Tex wrote:

                         

                        warrior wrote:

                         

                        When I was a post-doc at Brandeis

                         

                        This comes as quite a surprise.  I had no idea posts even needed docs.

                        It's amazing to think that that brain of yours generates enough energy to get you out of the bed in the morning.

                        • Re: 2,922
                          Tex Registered Users
                          Currently Being Moderated

                          Who says I get out of the bed in the morning?  Ever heard of wireless?

  • Re: 2,922
    KyGuy Registered Users
    Currently Being Moderated

    Congratulations!  We're all fortunate to have you here coaching everyone along.  Keep up the good work!

     

    Take care,

    Kelly

  • Re: 2,922
    paralyzed Registered Users
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    2,923

     

    Thats about how many times I could say thank you for all you have done for Linda and I and still not come close to showing my appreciation. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

     

    Jim

  • Re: 2,922
    VRONTAK65 Registered Users
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    That is awesome news Tex !!! I've been on this board every where since my son was dx in 09 with t-cell all ..... I've seen you help so many people on these boards I just wanted to say THANK YOU!!!!!! Keep up the good fight!!!!!

    • Re: 2,922
      tranier Registered Users
      Currently Being Moderated

      I ditto all of the above...YOU are so reliable...I'm sure that number isn't even close to the times you have made a difference for others - TRULY AND SINCERELY ...YOU GO!!!

  • Re: 2,922
    Lottie Registered Users
    Currently Being Moderated

    What a milestone, what an inspiration. So much hope is given just by you making this post. For people like Nate and i, where he is 15 months out, and especially for people just beginning. You are living proof that there is hope and it can happen. You personally, Tex, have helpedme so, so many times. Advice, a joke when I needed one, and support when I was lost. Thank you for sharing your life with me, and with all of us.

  • Re: 2,922
    bwarren25 Registered Users
    Currently Being Moderated

    Ditto to what everyone has already said here!  Tex, there truly are no words to express how much we all appreciate the words of encouragement, wisdom, and humor that you share with each of us.  You've definitely been there for me & Dean over the past few years more times than I can count. You're amazing and give us all hope for a better future.  Luv ya my friend.....Betsy

  • Re: 2,922
    JBT Registered Users
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    Wow Tex congratulations! What a great day and  as we who have seen you on this forum know in your  "2'600 days" you have helped many others going through this terrible disease. I can remember being in the hospital reading yours and others posts and it giving me a sense of hope.  Many thanks and again congrats!

     

    My best,

    JT

  • Re: 2,922
    danno Registered Users
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    Congrats Tex, always enjoy your helpfull advice.

     

    Danno

  • Re: 2,922
    chrisdo Registered Users
    Currently Being Moderated

    Congratulations... i know i have  benefited a lot by having you around on here.... thanks again for all the advice and information....

     

    chris

  • Re: 2,922
    willowbayfarm Registered Users
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    My response to this thread is way overdue, but I also take great pleasure in bumping it back to the top of the list, because it's truly quite a milestone.  Reading it the first time brought a huge smile to my face, and re-reading it today did the same.

     

    I'm grateful for the docs and the technology that made it possible for you to be here, day after day, encouraging, commiserating, injecting a touch of humor into a situation sorely needing some levity, offering sage advice and counsel in your own distinct way. 

     

    Thanks for carrying on here with such reliability and dedication. 

     

    - WBF

     

     

     

    • Re: 2,922
      Tex Registered Users
      Currently Being Moderated

      Aw, thanks.  That means a lot coming from you.  I wish you were able to still be here on the line with us every day.

       

      But it's great to hear from you.  How's school going?

      • Re: 2,922
        willowbayfarm Registered Users
        Currently Being Moderated

        Tex wrote:

                                

        But it's great to hear from you.  How's school going?

         

         

        Actually, I like school a lot.  I think I will like it even more now that I am done with math!!!  I just started back for summer this week, after a short break (I finished up spring quarter on the 23rd).  I had, and still have, a lot of things to keep me busy here on my little farm - a lot of what I like to call "remnants of winter" which means fence posts to replace!  And seemingly endless mowing, trims to be painted, etc. etc.  But I did ride my mare yesterday, for the first time in ages, and hope to be able to continue riding her this summer.  She is very fun - a homebred, now 15 years old, and we know one another very well - it's a real hand-in-glove relationship.

         

        The process of going to school is interesting at my age - a lot of the little bits and pieces of information I've accumulated over the years clunked into place this past quarter while I was taking microbiology, so that was very satisfying.  I'm taking A & P this coming fall and winter, which actually has me a little freaked out because there is a tremendous amount of memorization involved.  In fact, I just bought my book and am planning to spend some time this summer reading ahead in hopes of getting a jump on the quarter, and I saved these two classes until this point so I could get my study habits dialed in before I tackled them.  So far everything's been going well, too bad about that non-existent social life! 

         

        - WBF

        • Re: 2,922
          Tex Registered Users
          Currently Being Moderated

          I have no idea what A&P is.  There used to be a supermarket chain with that name but I don't think they handed out grades.

           

          I maybe knew once upon a time but I was a Poli Sci major with a minor in business (which meant I took the "fun" business courses).  Hate getting old.

           

          Now, about this social life business.  Don't cougars prowl college campuses (campae?) these days?  I'm sure you could rustle up a little something.

           

          Sure wish you were prowling these pages on a regular basis.  And what the hell ever happened to Pam?  She was writing less because of her carpal tunnel but then vanished pretty much altogether.  We need you guys.

           

          Blessings

          • Re: 2,922
            KyGuy Registered Users
            Currently Being Moderated

            Tex wrote:

             

            I have no idea what A&P is. 

             

            Anatomy and Physiology

             

            And what the hell ever happened to Pam? 

            I while back I sent her a message on Facebook but never got a reply.  I think I've only seen her post once on FB since I sent that message.

          • Re: 2,922
            willowbayfarm Registered Users
            Currently Being Moderated

            I did date a guy for about six months who was 9 years my junior, but most of the guys on campus are more like 20+ years younger than I, which is quite a stretch, don't cha think? 

             

            I did try to be a bit more present here over the past six months, but precalculus and statistics were trying to take over my life.  If can I get a bit more caught up around the farm, I'll try to give you a hand more often this summer.  I wonder about Pam, too.  Hope she's doing well.

             

            - WBF

            • Re: 2,922
              warrior Registered Users
              Currently Being Moderated

              Hey I would not worry about age... Barney Frank just married a man 30 years his junior...glad you are having fun in school...

              I never left I was having so much fun

            • Re: 2,922
              Tex Registered Users
              Currently Being Moderated

              willowbayfarm wrote:

               

              I did date a guy for about six months who was 9 years my junior, but most of the guys on campus are more like 20+ years younger than I, which is quite a stretch, don't cha think? 


              It depends.  Is being a cougar still stylish?  Or has that fad passed?

              • Re: 2,922
                pammartin Registered Users
                Currently Being Moderated

                My fad cannot pass unless I divorce, and I am not doing that again, ran that race once.  One of us will be removed from the planet first, depends on who has the better plan and how good they are at pulling it off.

                • Re: 2,922
                  Tex Registered Users
                  Currently Being Moderated

                  I wouldn't have suggested that to a married woman.  I was suggesting it to WBF.  She's free, clear and there's no reason she shouldn't have a blast in the second half or so.  Get those young guns and make them do chores around the house that we older guys couldn't do.  And they  don't need a pill to, um, perform.

                   

                  HEY WILLOW!  WE'RE TALKING ABOUT YOUR SEX LIFE HERE!

                  • Re: 2,922
                    willowbayfarm Registered Users
                    Currently Being Moderated

                    Tex wrote:

                     

                                                                                HEY WILLOW!  WE'RE TALKING ABOUT YOUR SEX LIFE HERE!

                     

                    Now there's a conversation that's destined to be short!!!    When you guys decide to discuss something interesting, let me know!

                     

                    - WBF

        • Re: 2,922
          KyGuy Registered Users
          Currently Being Moderated

          which means fence posts to replace! 

           

          Maybe you need one of those post docs that Warrior mentioned.

          • Re: 2,922
            Tex Registered Users
            Currently Being Moderated

            KyGuy wrote:

             


            which means fence posts to replace! 

             

            Maybe you need one of those post docs that Warrior mentioned.

             

            Hey!  Write your own material!

             

            Thanks for the info on Pam.  I hope her hands are okay.  Imagine, she did so well avoiding any notable GVH and then her wrists go kablooey. 

             

            Hope she's okay.

            • Re: 2,922
              mamawarrior Registered Users
              Currently Being Moderated

              Congratulations, you truly are an inspiration and a blessing to many folks.

               

              And glad to hear your faring the fires well. Take care.

              • Re: 2,922
                Tex Registered Users
                Currently Being Moderated

                I thank you for all you do around here.  I think we've got a nice 1-2-3 punch of lifers on this forum.

          • Re: 2,922
            warrior Registered Users
            Currently Being Moderated

            I am certain that you could find some unemployed post-doc to help with your fence......

            maybe some unfunded  PI (principle investigator) I just submitted (7/3/12) by NIH grant competitive grant renewal so may be if the NEI does not like my grant I will have some time on my hands

            • Re: 2,922
              willowbayfarm Registered Users
              Currently Being Moderated

              warrior wrote:

               

              I am certain that you could find some unemployed post-doc to help with your fence......

              maybe some unfunded  PI (principle investigator)

               

              If you run across any good looking post-docs or PI's, please feel free to send them my way!

               

              - WBF

  • Re: 2,922
    pammartin Registered Users
    Currently Being Moderated

    Hey, I just found this post, I forget to browse the board, especially when the spammers are at their peak, I tire of wading through 30 posts to try and find one credible, but then I feel guilty because someone might need help.

     

    Congrats on your continued success, I for one am damned glad you hit the 2922 a while back, and am looking forward to reading your post in the future that doubles and triples that number.  I would toast you with a bottle of good wine but it damn near kills me with the indigestion so I will raise my glass of iced tea in replacement, but the congratulations are just as sincere (The wine would taste better for a few minutes though).

    • Re: 2,922
      Tex Registered Users
      Currently Being Moderated

      pammartin wrote:

       

      (The wine would taste better for a few minutes though).

       

      Thanks, Pam.  Have you tried Nexium?  Got a little GERD maybe?  Huh?

       

      That should help with the wine burn if you decide you want to try some.

      • Re: 2,922
        pammartin Registered Users
        Currently Being Moderated

        Meatball and Mullet took me off the nexium, looking toward Cleveland for possible options..  But I am staying away from the alcohol, the liver numbers aren't horrid, but they are showing tissue damage because of the Sprycel.  That I have to take, the alcohol was fun and enjoyable.  So for now, I have a wine closet stocked full, and no one to enjoy.  Bob hates wine.  Maybe someday.

        • Re: 2,922
          Tex Registered Users
          Currently Being Moderated

          Hell, if I waited for my liver numbers to get into norms, I'd never drink again.  Probably wouldn't do a lot of other things, either.  I'm not encouraging you to drink, not me.  But I think it will be some day, not maybe.

          • Re: 2,922
            pammartin Registered Users
            Currently Being Moderated

            If it were not for the heartburn, I wouldn't worry so much about the liver, can't do more damage to it than I did in my early 20's through 30's.  Damn indegestion about kills me after a few sips, and I have never really been one to sip.  Looking for ways around it, but so far nothing has worked.

            • Re: 2,922
              Tex Registered Users
              Currently Being Moderated

              Well, liver damage can accumulate and it doesn't always do a great job of healing itself.  Still, it's built to take a good bit of abuse.

               

              Why did they take you off Nexium?  You do need to be aware of when you take it so there's no messing with your calcium absorption.  But you can just take it at a different time from eating...in fact you're supposed to anyway.

              • Re: 2,922
                pammartin Registered Users
                Currently Being Moderated

                They took me off everything, even the cardizem for Printz Metals Angina.  This is another reason why I am looking for new doc, Tuesday is the day.  Almost everyone else on here takes nexium, others meds, I was taken off all of them, even the small dose of antidepressant, I am really thinking Cleveland will have a different approach to my treatment.  My son has barred me from going outside, he said I look like I have pig eyes.  LOL  he can be so kind.

                • Re: 2,922
                  Tex Registered Users
                  Currently Being Moderated

                  You looking for a cardiologist?  Aiin't you kinda young for angina?

                  • Re: 2,922
                    pammartin Registered Users
                    Currently Being Moderated

                    Had a heart attack when Nick was 3, I was 35.  Stress related, so they say, no serious damage, was whisked off to West Penn via Life Flight, they did immediate heart cath and found no blockage.  After three more days and a barrage of tests the insurance finally stopped paying for they decided I had angina.  Been on heart meds ever since.  Last fall with the CML diagnosis, the oncologist removed me from all meds, even the Cardizem.  That will be another issue we talk about in Cleveland on Tuesday.

                    • Re: 2,922
                      Tex Registered Users
                      Currently Being Moderated

                      pammartin wrote:

                       

                      Had a heart attack when Nick was 3

                       

                      Yikes!  I'm glad that's sorted out.  How has chemo affected you?

                      • Re: 2,922
                        pammartin Registered Users
                        Currently Being Moderated

                        The Sprycel needs to be watched, for the PE, changing heartbeat, and a few other issues.  I was and have been really good on the Cardizem for years, we will talk tomorrow about why I was taken off it, what interaction it can do, and if I can begin taking it again.  I am not looking for a great revelation tomorrow, but I am betting the doctor actually shows up for the appointment and am hoping when I receive labs they are repeated correctly, instead of missing the mark by several one-hundreths, a big deal when it comes to the PCR. 

  • Re: 2,922
    paul_rheaume Registered Users
    Currently Being Moderated

    Congratulations! That's fantastic.

  • Re: 2,922
    choccrackles Registered Users
    Currently Being Moderated

    Tex

     

    Congratulations...I can't think of anything better to celebrate...and glad to see you still counting.

     

    Hugs my friend

     

    Sandra

    • Re: 2,922
      Tex Registered Users
      Currently Being Moderated

      Thanks Paul and Sandra.

       

      How's Hamish, Sandra?  Sure miss you around here.

       

      Blessings

      • Re: 2,922
        choccrackles Registered Users
        Currently Being Moderated

        HI Tex

         

        Miss you guys too...but you know you can expect the unexpected drop in from me occasionally

         

        Hamish is still here! I won't lie and say it isn't a struggle...it still is and he is still on lots [!] of meds. He looks pretty dreadful from time to time but this is mainly the GVHD ...still pretty much the same as it is has been since it started. Definitely not pretty but usually I forget because it just Ham to me...it's not till someone reminds me that I take a good look and then it kinda hits me. He is currently on a leprosy drug to try and tackle...they just keep trying to throw things at it. He looks like a burns victim.

         

        But...with our usual bravado we stay positive! And it definitely does not stop him from getting out there and enjoying life. Recently I asked him if he had a "bucket list" ...kinda nonchalent...so as not to make a deal of it, but wanting to know so I could maybe help with getting a few ticked off...he doesn't have one, doesn't want one...happy to be where he is and be with his mates...how cool is that? We shoudl all try and just enjoy those little things and saturate ourselves with time spent with friends.

         

        Glad to know you are doing great Tex and keeping those little pearls of wisdom coming for the folks here.

         

        Sandra

        • Re: 2,922
          Tex Registered Users
          Currently Being Moderated

          Sounds like Ham and I are cut of the same cloth.  I refuse to have a bucket list...well, I do have one for self growth, I'd like to hit real maturity before I die but I just want to do what seems appealing at the moment instead of setting up a bunch of things I want to do.

           

          Is the leprosy drug dapsone?  I was on that and penicillin at one point to replace Bactrim as they thought it was suppressing my WBC too much.  I think I heard it wound up not being overly effective for leprosy, how 'bout that?  Anyway, that was to work to keep me from picking up a parasitic issue, near as I can tell.  It wasn't for GVH.

           

          I really admire your son and his mom.  Ya'll continue to be real troopers.

           

          Do stay in touch.  Tell Ham hi for me.

           

          Blessings

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