The Leukemia & Lymphoma Society - Fighting Blood Cancers
42 Replies Latest reply: Jun 25, 2012 12:31 PM by Tex RSS

Back in the saddle again

jimit Registered Users
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Well I am finally back in the hospital for my transplant. My donor is all lined up and I start chemo tomorrow. I only have what I have read on this site as an idea of what is going to happen to me but for some reason I am strangely calm. As I have written before on this site I have been in and out of the hospital since January so I am hoping that one way or another I can resolve this sword that has been hanging over my head. I feel great right now going into it. Gettting my heart issues resolved  before the transplant was definitley the way to go. I will be posting as my health allows during my stay. Wish me luck everyone.

 

Jim

  • Re: Back in the saddle again
    mamawarrior Registered Users
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    Good luck jim, and one piece of advice. Walk, walk, walk and keep walking till you walk out that front door. And you will.

  • Re: Back in the saddle again
    Tex Registered Users
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    Kick its ass, Jim.  I'm glad your heart surgery went okay.  I'm guessing there aren't other issues that need to be dealt with besides getting you cancer free.  So go get cancer free.

     

    The odd calm is something that happens.  You realize you've set a course and are locked in and you can finally let your mind rest at ease as your immediate future is planned out.  It's a weird situation but a nice feeling after all the time you've spent in limbo getting there.

     

    If you don't feel up to posting, maybe someone else can give us an occasional update?  Keep us informed.

     

    Blessings

  • Re: Back in the saddle again
    KyGuy Registered Users
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    Good Luck Jim.  Keep the docs informed of any issue - the earlier they react, the better.  Fight like hell.  Exercise is important to push yourself to move.

     

    Take care,

    Kelly

  • Re: Back in the saddle again
    willowbayfarm Registered Users
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    Good to hear from you, Jim.  Stay determined, make friends with the nurses and staff (you never know when you'll need to call in a favor), exercise as much as you can, and kick butt.

     

    Keep us posted and keep it boring (boring is good). 

     

    - WBF

  • Re: Back in the saddle again
    jimit Registered Users
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    Thanks for all the encouragement. I am three days in and being radiated like a microwave. I will say this it does wonders for your dieting and any issues with sleeping I might have. Next thursday is "BMT Day" so I am hoping to be at the clubs by weekend. Of course that's a best case scenario. My best wishes to anyone else out there with this bullshit disease

    • Re: Back in the saddle again
      Tex Registered Users
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      jimit wrote:

       

      I am...being radiated like a microwave.

       

      Then don't forget to give yourself a quarter turn every five minutes.

       

      FWIW, transplant day is usually called "Day 0 (zero)."  Gotta keep up on the nomenclature.

      • Re: Back in the saddle again
        jimit Registered Users
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        Well day zero is this Thursday for me. Again I have no idea what will happen but one thing I do know is that old cancer ridden bone marrow is history.

      • Re: Back in the saddle again
        felursus Registered Users
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        Wasn't there a Saint who was roasted alive and who famously said something along the line of: "I think this side is over-done, and I need to be turned."????

         

        Seriously, Jim: good luck - and follow all the advice about exercising as much as you can (walking, ankle pumps, heel slides,  - whatever you can in bed.  If they have given you a treadmill or pedal bike - go for it. 

         

        Hugs,

        karen

  • Re: Back in the saddle again
    warrior Registered Users
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    Hey good luck and hope that it all stays boring

  • Re: Back in the saddle again
    babygap5 Registered Users
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    Best of luck to you!!!  Keep your spirits up, and kick a$$!!!!

  • Re: Back in the saddle again
    CherylLynn Registered Users
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    Jim

     

    If I read things correctly, then today is your Day 0 - and you should be getting your cells today!!!

     

    As others have said - walk, walk and walk some more...and eat as you can - I had 12 sessions of radiation - two a day for 6 days 12 minutes on each side - I chose think about it as "getting out in the sun" - hopefully everything will be boring and you will be out of there and on the road to recovery really soon...prayers to you!

     

    Cheryl

  • Re: Back in the saddle again
    jimit Registered Users
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    It"s two days after transplant and and I have grown six inches in height and plan trying out for the Chicago Bulls to show off my new skills. Honestly thanks to everyone for the good wishes.It was very uneventfull. Pretty much tossed my cookies at everything I tried to eat. But this morning I actually ate two bananas. Keep getting told to expect worse health. Have been up and walking when posssible. Hell my pump ran out juice last night so I had to call it a day. So far so good.

    • Re: Back in the saddle again
      Tex Registered Users
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      Don't they give overnight refills?  They promised me a pump but I never got one.  I never got mouth issues so they didn't think I needed one.   I was glad to avoid the pain but I was really looking forward to the pump.

       

      Glad you're feeling well enough to post.  I didn't touch my computer for over a month after my SCT.  I just wanted to lie around and managed to do it when the nurse (or my wife) wasn't looking.

       

      Throwing up isn't something we hear of a lot but nothing is normal or abnormal in our recoveries.  Things just happen and the docs hopefully know how to deal with it.  They usually do, too.  What a nice surprise.

       

      Hang in there and let us know what's up when you're up to it.

       

      Blessings

    • Re: Back in the saddle again
      felursus Registered Users
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      Hope you are feeling better today.  Did they give you a refill for the pump?  Since you can't get more than the allowed dose, I fail to understand why you couldn't get a refill when you needed it.  Keep walking!

      Hugs,

      Karen

    • Re: Back in the saddle again
      KyGuy Registered Users
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      I'm glad to hear things are going well so far.  Keep moving, it will pay off!

       

      Take care,

      Kelly

      • Re: Back in the saddle again
        jimit Registered Users
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        Well its day 10 after transplant and all the walking and treadmill work has gone out the window. I am so tired and sick I am lucky to go to the bathroom. I was great until two days ago and since I have had two fevers in a row and tiredness beyond belief. How long does this go on. My hair is coming out at a pretty good clip. My docs say everything is going great but it sure doesn't feel like it

        • Re: Back in the saddle again
          Lottie Registered Users
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          Hi jimit,

          My husband Nate had an allo SCT 3/2/11 when he was 24 (almost 25). Since he was the patient, I just consulted him on your recent post, and he said "pretty much, yeah" as in, that's what it was like for him. It got worse before it got better, too, if I remember correctly. Nate was discharged on +17 and was pretty yucky feeling right up until +15. He was still down for the count for 1-2 months after coming home before really feeling any energy. But, it does return. It takes time.

          • Re: Back in the saddle again
            CherylLynn Registered Users
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            yep this is when you really feel at your worst...is there any signs of engraftment yet...once that happens things will get better...tired is the number 1 complaint I am sure of transplants...hang in there rest when you need to

             

            Cheryl

        • Re: Back in the saddle again
          willowbayfarm Registered Users
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          Hang in there, Jim.  I imagine along with the normal fatigue produced by the process, you're dealing with the profound fatigue that the radiation can cause.  Just keep putting one foot in front of the other.  This too shall pass, but not soon enough.  Know we're thinking of you and wishing you well.

           

          - WBF

        • Re: Back in the saddle again
          Tex Registered Users
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          Most of us go through a period shortly after transplant where we feel like we've been worked over with a baseball bat, at least energy wise.  I remember that all too well.  The big thing is to continue to do what exercise you can, even if it's just pedaling a "bike" while lying in bed.  Just stay a little active and this period should pass by somewhat quickly.

           

          But we all need a day or two to just pull the covers up over our heads and be a sick person for awhile.  Enjoy them but back to work ASAP.

           

          If your mouth is feeling good, you've escaped what I understand is the worst experience of the days immediately following transplant.  I also remember them telling me all was going well and thinking "WTF?!"

           

          Hang in there.

           

          Blessings

        • Re: Back in the saddle again
          KyGuy Registered Users
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          You're in the rough part now.  Yeah the doc's perception of "going well" means that feeling like crap is where you're supposed to be.  Hang in there. It will get better. Push yourself to get out of bed and walk a bit.

           

          Take care,

          Kelly

  • Re: Back in the saddle again
    chip Registered Users
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    Matt, my boyfriend, was pretty rubbish until his counts started to come up, I think that was on day 10 for him. He was being sick daily and had an awfully sore mouth, he couldn't be bothered doing anything except sleep and occasionally listen to music. During previous chemo treatments all he did was watch dvds and youtube, def no enrgy for that immediately after transplant. Once the counts started to improve (and for him, they jumped up) he improved dramatically, so much so he was discharged on day 13.

     

    Fingers crossed for you.

    • Re: Back in the saddle again
      jimit Registered Users
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      Thanks for the info even though it's all to true. Still feel like crap and its day 12. The mouth thing is terrible. I finally got out of bed and started walking yesterday. If this keeps up I weigh what I did in high school just with no hair. My whites went from .2 to.3 so some improvement. My docs seem encouraged. All I know I hope this ends sooner then later.

      • Re: Back in the saddle again
        Tex Registered Users
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        It sounds like you're trying to get engraftment started.  It shouldn't be long now before your WBC makes a few jumps and your feel good juices should start flowing.

         

        Keep us posted and congrats on getting out of bed.  That's one of the first hurdles.

         

        Blessings

      • Re: Back in the saddle again
        JBT Registered Users
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        This is the roughest time but it will pass! I had mouth sores too and those are no fun all you can do is gargle gargle gargle. Once your counts start to increase the mouth sores will go away. Your WBC counts going up is a great sign and while they start with these small increases one morning you will see a bigger move than you've had and that should continue.

         

        Hang in there, my guess is that in just a few more days you will be feeling better

         

        My best,

        John

        • Re: Back in the saddle again
          jimit Registered Users
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          Thanks for the info.. Just a update they finally let me out. I stayed a little longer to clean up a few issues. That bad case of mucositis and the touch of HVGD . Mostly gone now. The the thing that dominates my life and thoughts is my taste buds. I have zero right now. Any ideas from the community on how long for them to come back. I just feel it would help with all the other bullshit I am going through right now. I look in the mirror and I see a different guy who looks gaunt and scary. No reason to go through the list of all my other maladies I'll just say that I feel glad to be out but I am still pretty sick. Any help on dealing with this period of time is again as always appreciated

          • Re: Back in the saddle again
            Tex Registered Users
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            So, you're roughly 30 days out?  My only advice is hang in there, it gets better.  Take your medicine, do what the docs say and try to get some exercise when you feel up to it.

             

            I didn't have the mouth issues most people have so I can't offer any experience with the taste bud.  It seems folks have reported them coming back online at various times so I don't know if you'll find a set answer to the question.  But I'll shut up and let those with experience speak.

             

            It sounds like you've got the normal crappy feeling most of us have around Day 30.  Hang in there.

             

            Thanks for the update, Jim.

             

            Blessings

          • Re: Back in the saddle again
            JBT Registered Users
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            Jimit,

             

            Great to hear that you out and home! I had the same problem having no taste buds and as I recall it lasted 2 or 3 weeks before they started. Coming back.  Nothing tasted good and I had some stomach gvhd so I didn't want to eat anything.  Try to eat some each day as it will help you regain your strength.  I also was very gaunt and sickly looking as I'm sure lots of us here experienced....don't worry that will go away as your body continues to recover.

             

            So glad your home! Follow the doc's instructions  and you will see things continue to change for the better day by day.

             

            My best,

            JT

          • Re: Back in the saddle again
            KyGuy Registered Users
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            Glad to hear that your out.  Your taste buds will probably gradually return.  The amount of time is different for different people.  If I remember correctly, it took several months for me but I never lost it completely.

             

            For any other issues, follow the doc's instructions.  Exercise will help the healing process since it gets the blood flowing.  Work on brain games because getting blood to the brain will also help with healing.  Getting rest when you need it is also important.

             

            Take care,

            Kelly

          • Re: Back in the saddle again
            warrior Registered Users
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            Jimit

            for your information it is not just your taste buds but your olfactory receptors... taste is dominated by both. It turns out that the olfactory receptors are the only neurons in adults that keep dividing ... hence a target for chemo  chemo does not differentiated what cells it kills it targets dividing cells

            it took my partner several months to get her sense of taste back. By the time she was home from her auto-sct she had lost over 40 pounds and looked gaunt and frail... 2 years later she is back to her starting weight she has her aerobic stamina back but still not her upper body strength.... but she is not  inclined to join me in the local Y's weight room... hang  in there it takes a bit of time to recover from this extreme medicine

            • Re: Back in the saddle again
              felursus Registered Users
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              Suggestion: if Kathy won't do the gym, would she do some exercise at home?  Theraband/theratubing works wonders. Also a couple of hand weights. I'd be happy to find illustrations of exercises she could do.

              Karen

            • Re: Back in the saddle again
              KyGuy Registered Users
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              Warrior,

              Tell Kathy that I believe that one of the biggest factors that helped me get through my relapse was my dedication to my exercise program.

              Kelly

              • Re: Back in the saddle again
                chrisdo Registered Users
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                My father had his transplant 14 months ago and is still dealing with taste bud issues. Seems to come and go but it starting to gradually get better... he also lost a lot of weight but has been slowly gaining it back... it will get better..

                chis

              • Re: Back in the saddle again
                chrisdo Registered Users
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                My father had his transplant 14 months ago and is still dealing with taste bud issues. Seems to come and go but it starting to gradually get better... he also lost a lot of weight but has been slowly gaining it back... it will get better..

                chis

                • Re: Back in the saddle again
                  Katsdad Registered Users
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                  I'm about 5 mos post SCT and while my taste buds have largely recovered a lot of things still taste a little off.  I think I'm about 85% back.

                  • Re: Back in the saddle again
                    jimit Registered Users
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                    This a reply to everyone who has posted info to me. Thanks everyone. Update I'll be home two weeks this Monday. I am gradually getting better at eating but tastebuds still completely out of whack. The biggest issue is fatigue. I try and move around as much as possible but I wake up tired to the bone and finish the day the same way. It's not like sleepy tired but like I have had all my energy and strength removed. I hear you guys talking about treadmills and stuff and i want to get going on that but at this point just staying on my feet walking around a walmart or my house makes me exhausted. Funny thing is before all this leukemia stuff I was big gym guy and all that so it believe it when I say I want to get started. I definitely exercised more in the hospital than at this period. One of the the other things that make it hard to work out. I have this neuropathy on the soles of my feet that makes them very tender and painful to walk on. Enough complaining from me I am sure there our people in worse shape than myself. I love posting this stuff just to get it off my chest plus the benefit of reading other peoples experiences who have gone through all of this before. One day I hope to be the sober person helping someone get through what I did and hopefully making things better for them.

                    • Re: Back in the saddle again
                      KyGuy Registered Users
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                      Jim,

                      You'll get there.  Sometimes it seems like things were easier in the hospital but keep in mind that at home, you have further to walk for anything.  I remember thinking that the bathroom was just 2 steps away from my bed in the hospital but 10+ steps at home.  It makes a difference when you've had the energy sucked out of you. I didn't have neuropathy so I can't speak to that but a number of people on here have been treated for it. I know that some of the meds for that can also leave you tired.

                       

                      Small steps lead to big ones so just take it slowly and be patient with yourself.

                       

                      Take care,

                      Kelly

                    • Re: Back in the saddle again
                      Tex Registered Users
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                      There's always someone off worse than we are.  That doesn't mean we don't have our own pains in the ass and the thing is, they're our pains in the ass.  It's okay to complain.  We all have and do.

                       

                      Welcome to the world of post-transplant fatigue.  It's the top complaint of long-term survivors.  I'm still dealing with it over eight years out.  Some people improve a lot, some not so much.  I've finally just gotten to the point I'm frustrated enough I'm just pushing through it but that's not something I'd recommend to someone who's in the early part of his/her recovery.  This is a long process and you're still in the first minutes of it.  Be patient.

                       

                      I'm glad you're doing so well.  Keep us posted.

                       

                      Blessings

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