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  1. #1

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    Angry Update

    I really wish that for once the doctor would walk into the room and say "good news!"
    Jason has to have a stem cell transplant; apparently it used to be known as a bone marrow transplant, but the stem cells aren't always harvested that way so now its called a "blood and marrow transplant" - or just BMT.
    He has to go through 2 rounds (a month apart) of what they call "salvage" chemo that requires inpatient hospitalization, then injections to increase his stem cell production, then the harvesting, and from there its gets a little confusing. I think he has to be admitted for more high dose chemo before the actual transplant. Then comes the scary stuff.

    After the treatment the next "100 days" are critical, and he is at risk for numerous infections and complications. He also can't go to work. When he went through this before, he was able to work 8 out of every 10 days, and that really kept him in good spirits. His biggest concern in all of this is how much his family is worrying about him, and how he is going to provide for us. I am sincerely hoping that his boss will somehow arrange it so that he can work from home.

    His attitude was one of the reasons he sailed through chemo last time - I don't know if he will do as well with the transplant if he can't work and depression sets in.

    I know these are all things I don't need to be worrying about until there is a reason to worry, but I have a very difficult time with that. (Its part of the OCD)

    I guess right now what I'm feeling the most of is anger. I hate that he has to suffer all of this! I hate that all of this is giving him so much stress. I hate that we won't be able to use those Daytona tickets he won for the July race. I hate that it's going to be another summer the kids can't play with him in the pool, another summer we can't go to the beach, the zoo, or anywhere. And I really hate that he won't get to go to the 3 Doors Down concert that I bought him tickets for.

    I think its the concert that angers me the most. Around the same time he was diagnosed last year, I was just starting to listen to more "alternative" music (believe it or not, if you live in Jacksonville, anything that isn't country or classic rock is alternative) One of their best known songs is called "Its Not My Time":

    Cause it’s not my time I'm not going
    There's a fear in me but it’s not showing
    This could be the end of me
    And everything I know
    But it’s not my time I'm not going
    There's a will in me and now I know that
    This could be the end of me
    And everything I know
    Oh but I won’t go
    I won’t go


    We called it his theme song - I even made it the ringtone on his phone. He was diagnosed on his birthday last year, so this year I was determined to get him tickets for their acoustic show for this birthday. The tickets were supposed to go on pre-sale the day before his birthday, but they didn't. No matter what I did or where I went, I couldn't find anyone that could tell me why they weren't going on sale. So I sent a tweet to the band. They got back to me within minutes and they did some research and found that the pre-sale was actually for later that week (incorrect info posted on their website). They finally went on sale about 3 hours after they were suppose to, but I got them and we were going to be 11th row aisle.

    Its stupid to be so upset about a concert - I guess that in my mind, that was kind of a graduation for him, a completion...a full circle of things.

    I really hate this. Cancer just sucks.
    "Well-behaved women rarely make history."
    -Laurel Thatcher Ulrich, 1976

  2. #2

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    My thoughts are with you and Jason.

  3. #3

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    Quote Originally Posted by BlueSky View Post
    ...I really hate this. Cancer just sucks.
    Erin,

    I know how you must feel. Well, sort of. I'm so sorry that you've gotten your proverbial teeth kicked in yet again... But maybe there are bright spots to think about. My ex wife's brother is a leukemia survivor. He was pushing 50 years old when diagnosed, and I do not think they gave him much if a chance. He was at the City of Hope in San Diego. He found a donor in one of his family members, they killed his marrow, replaced it, and recovery began. As you may know, radiation doses to kill marrow always kills the reproductive organs, too. Except in Paul's case. 5 years later, he and his wife were blessed with a baby boy, a miracle that should not have happened, but did. What I am trying to say is that there is never an absolute when it comes to illness. Until that last heartbeat. There is ALWAYS hope, no matter how dire, no matter how impossible the odds may seem. Remember that there ARE miracles, and why shouldn't you and Jason be the ones to receive one...or more? For myself, I find it impossible to be optimistic, in anything...which can make life more of a challenge than it has to be...

    I have my own challenges, having lived with recovered paralysis of the lower extremities for the last 40+ years of my life...and there are many more days now, at age 55, where I sometimes feel like I've been given a raw deal. Particularly when I can only do 10 minutes a day of quarter and 8th notes on the bass pedal...before my leg just dies. This does not bode well for my drumming career...but I'm not giving up! But this small thing is nothing compared to what you face. When I was young, living with this was a challenge that I more easily fought, whether due to the inherent strength of youth, or maybe just the freshness of it all. After decades of fighting daily, it makes going on more difficult with each passing sunset... But your husband is just at the beginning of his challenges, awful, terrible challenges to be sure, but just the start, no matter how long it seems. You've got to help him keep up the energy to fight another day. And you will. I'm sure of it...
    Last edited by cabasner; 05-21-2014 at 04:07 PM.
    Now, just a tiny bit less than an absolute drum newbie
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  4. #4

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    Erin, you know that my prayers are with you and Jason.

    Cabasner, I know that you have mentioned your condition before, but this is the first time that I have read about the depth of you fight. I will be praying for you as well.
    Quoting gonefishin: Just have some bacon with ya when you go pick her up..........youre an instant chick magnet.





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  5. #5

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    There is nothing I can write to make you feel better about this situation. Just know that you and your family are being prayed for and thought of daily by all who care about you and your family. If I could make it stop, I certainly would. We all would in a heartbeat. Never, never, never, ever give up. I wish you peace and whatever you desire in this difficult time.

  6. #6

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    My heart goes out to you...

  7. #7

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    Don't know what to say except for sorry to hear...

    Thought's and prayers to you, Jason and your families.
    Gretsch Renown RN1 ~ Silver Oyster Pearl

  8. #8

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    Quote Originally Posted by pastor_bob View Post
    Erin, you know that my prayers are with you and Jason.

    Cabasner, I know that you have mentioned your condition before, but this is the first time that I have read about the depth of you fight. I will be praying for you as well.
    Pastor Bob, many thanks for your kind words. Rereading what I wrote makes me cringe...I had not realized that I'd sounded so...self-centered, when all I wanted to do was let Erin know that she ought never give up! Thanks again and my apologies to the group...
    Now, just a tiny bit less than an absolute drum newbie
    DW Collectors Cherry kit, Ludwig Black Beauty Snare, DW SuperSolid Oak/Cherry Snare, DW Sabian Vault Edge Snare

  9. #9

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    Quote Originally Posted by cabasner View Post
    Pastor Bob, many thanks for your kind words. Rereading what I wrote makes me cringe...I had not realized that I'd sounded so...self-centered, when all I wanted to do was let Erin know that she ought never give up! Thanks again and my apologies to the group...
    Not self-centered at all...we're a family, and we share all of our challenges and our victories. Hearing a victory story always helps, and yours just lets us appreciate what you go through to be a drummer even more!
    "Well-behaved women rarely make history."
    -Laurel Thatcher Ulrich, 1976

  10. #10

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    Erin,

    My situation is not nearly what Jason's is but, I can tell you this. Help him keep up his spirits up and keep a positive attitude. It makes a big difference. Hang in there and remember, "never give up".

    Know that my thoughts are with you and that this is a good place to vent. You have friends here.

  11. #11

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    Quote Originally Posted by Zickos View Post
    Erin,

    My situation is not nearly what Jason's is but, I can tell you this. Help him keep up his spirits up and keep a positive attitude. It makes a big difference. Hang in there and remember, "never give up".

    Know that my thoughts are with you and that this is a good place to vent. You have friends here.
    I couldn't agree more with Zick, definitely stay positive. Relax and enjoy the concert with Jason.
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