I’ve got an admission date

The transplant coordinator called me today with some good news. My back-up donor has agreed to move forward with the donation process. I also have a “confirmed” hospital admission date of April 17. I was first diagnosed with CML on April 17, 2012. Exactly one year later, I will be admitted to the hospital for my transplant.

Now that I have only 3 weeks left before my admission to the hospital, things are going to get “busy”. There’s still lots of stuff I need to do, like buying lots of comfy clothes for the hospital, and other stuff that I will need (every-day toiletries, books to keep me busy, new pair of comfy eyeglasses, etc.).

And then there’s the paperwork: my tax returns need to be filed; my will, powers of attorney, and beneficiaries need to be checked for accuracy, etc. I know a lot of people don’t like to talk about these things, and many in my position would choose to ignore these things, as if putting these things in order before the transplant would somehow jinx the transplant. Some may even conclude that I’ve given up, but that is far from the truth. For those that know me well, they know this is just the way I am. Everything has to be in order, the way I like it. Somewhat of a control freak, yes. Probably has something to do with the fact that I am a lawyer…Anyways, I have not given up. It’s just that I will feel so much more comfortable going into the transplant if I know everything is taken care of.

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10 Responses to I’ve got an admission date

  1. Helen williams says:

    Wow.how are you?After 6 mths on gleevec and upto 46%bcrabl.Then 3 months of nilotinib and 12.74%.Not were my dr wanted me to be .1% was his requirement.Due to see him in a month.why is it youre having a transplant rather than any more tki s?xx

    • Hi Helen,

      I am doing well, thank you. How about you?

      The reason I am going to transplant and not put on more TKIs is because I presented with blast crisis in my peripheral blood on Oct. 16, 2012, meaning I had more than 20% blasts in my blood. This is an advanced stage of CML. It is expected that no matter what TKI I am on, it will loose it’s effectiveness within months, so I have no choice but to go to transplant. So far, ***fingers crossed***, Gleevec is holding the blasts at bay. But no one can predict when it will stop working. And a person needs to be in remission to go to transplant, so now is a good time for me.

      The BCR ABL numbers you have been quoting appears to be your PCR test results. My most recent result on the international scale was 33, so nothing to write home about. PCR test results tell you how well you’ve responded to medication, and it seems you are responding better on nilotinib. But it is not the PCR test results but the blast % that tells you what stage of CML you are in. My guess is that you’re probably in chronic phase (please correct me if I’m mistaken), so as long as you’re responding to medication, a transplant will not be considered in your case. Most people will respond to medication. Only 5 – 6% of all CML patients progress to advanced phase disease. Very few CML patients need a transplant these days. Maybe that’s why your doctor hasn’t talked to you about it yet…

      Regards,
      Winnie

  2. Hanna says:

    I’m happy to hear that it’s all moving forward, which means you’re soon going to be entering the recovery phase!! My gazillion prayers are with you for a speedy recovery, and I can only imagine how scary, intimidating, and nerve racking it may be, but you have demonstrated to be one of the strongest people I know, and for that I am confident that you’ll be nothing short of great in the next part of the road. It may be a bumpy one, but we’re all here cheering you on. Tackle all that paperwork like it’s no one’s business, and maybe check out Target to get the stuff you need! We love you, stay strong! xoxo

  3. Thanks, Hanna! I will stay strong! I should hit Target or WalMart – hope they have petite pj’s. Unlike Cynthia, I was not blessed with long legs so I need petite pj’s : )) Mine are pretty stumpy, come to think of it. I sometimes wonder if we’re really sisters!

  4. Cheryl Thornton says:

    thanks for sending me the link to your blog…I hope someone will be posting for you while you are in transplant…there were many days that my husband posted for me…It is good that you are getting those things in order…I even planned my funeral – and before you panic – I went online to my local funeral home and just picked out some things – I didn’t want my family to have to go through that process if I didn’t make it through – its not that I didn’t think I would make it (and I certainly don’t think that of you either) but it was important to me to have some control in my life during this process and that’s how I took control. Comfy clothes are a necessity – books are good too – but I found I didn’t have the mental capacity to read and found magazines a better option because the stories are short and don’t require much attention span – get yourself some Biotin and start rinsing your mouth a couple times a day now to get in the routine of it! I will be following along and lending my support when I can! Remember YOU ARE A STATISTIC OF ONE!!!

    • helpsavewinnie says:

      Hi Cheryl!!!

      I’m trying to convince either my husband or sister to post for me while I’m in transplant. My husband isn’t much of a writer, since English is his second language, but he’s gonna have to step up if need be!

      Actually, I am also considering making my own funeral arrangements. I already know where I want to be buried (if it comes to that) and I’ve discussed it with my husband. He’s ok if I go ahead and make the arrangements now. It was such a coincidence that there was a special on tv discussing the benefits of making your own arrangements. We watched that show together and he was ok with it. I hope people reading this won’t get the wrong idea – I HAVE NOT GIVEN UP!!!

      I was thinking the same thing about books, whether I could really read them while undergoing chemo and radiation. You really need to focus for books…thanks for the advice, I’ll stock up on picture books and magazines!

  5. Natalie Chung says:

    Hi Winnie,
    I don’t know if you remember me but we went to U of T together…and I think Bethune?
    I found your blog through Facebook and I am so sad to read that you are ill. My heart and prayers go out to you and so sorry you are dealing with this. I admire your strength and courage and have no doubt that you will overcome this. Thinking of you.
    I’ll be thinking of you.

    • helpsavewinnie says:

      Hi Natalie,

      I do remember you! Hope you are doing well. Thank you for your kind words. I was just passing by U of T today, on my way back home from the hospital. As I drove past the U of T campus, I thought back to the days when I was a student there, so many years ago. I was so young and felt so invincible then. It’s so nice that after so long, you still remember me. I am very touched. Thank you!

      Regards,
      Winnie

  6. Polina says:

    HI Winnie,
    Please stay strong. Everything will be fine. Thinking of you. Polina.

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