Day+84

I’ve been trying to write this post for the past week but my wi-fi was so unsteady that I just gave up, until today.

Can you believe it? It’s already Day+84! Day+100 will be here soon.

I have some good news to report today. My “60-day” bone marrow aspiration indicated no evidence of leukemia! In addition, my “60-day” PCR test results indicated PCRU, meaning that using the most sensitive test for CML available, they were unable to detect any CML in my blood! I am very happy and I truly thank the Lord for bringing me to this point.

Despite the very good news, the tough journey ain’t over yet. I’m still not out of the woods, so to speak. There’s always the chance of relapse, but I’m not going to think about that. I can’t live being afraid of “what if’s”. Apart from relapse, there’s still a lot of things I need to conquer.

Last week, I was hit with what the doctors and I think is GVHD of the mouth. Symptoms included, but not limited to, extremely dry mouth, painful blisters on the sides and top of my tongue, swollen taste buds, and almost total loss of my taste sensation. So, what does this all mean? It’s 2 steps back for me in terms of my taste sensation and eating. All of the progress I’ve made during the past several months in respect of my taste sensation is gone – I can’t taste a single thing anymore. I am losing weight again, cause it’s too painful to eat and everything tastes like crap. It even hurts to talk. I am soooooo PISSED!!! I was so hoping to be able to taste again, but now I am at square one. Truly sucks! OK, OK, I tell myself it’s another hurdle I must overcome and the most important thing is that I am cancer-free. OK, then I come back into perspective and I tell myself I will conquer this.

This post is kinda weird, kinda rambling if you ask me. Oh, well…

A shout-out to Helen Williams, who just recently underwent a mini-transplant also for CML. She lives in the UK and reads my blog sometimes! A shout-out to Michelle and the ladies on bmtsupport.org. Sorry I disappeared from the chat room this past Tuesday! My wi-fi was so unstable, it cut me off. I think I’ve given up trying to get into the chat room until I have a real computer (as opposed to my iPad).

And finally, a shout-out to Fr. Bill and St. Luke’s Parish -their support and prayers continue to keep me strong and faithful. Thank you!!!

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5 Responses to Day+84

  1. Cheryl Thornton says:

    Always good to find your updates in my inbox! I am so glad that your results showed no signs of CML – isn’t that an amazing feeling??!! And there is no need to think that a relapse will happen, especially if they are thinking your mouth sores are GVHD – if you have GVHD happening, it means its killing off the leukemia!! Mouth sores are the worst – I had them for 7 months post transplant – and yes they make eating and talking very difficult. Try not to get too frustrated – ask the Drs. what your white count is – I found when my wbc went too low, my mouth sores took over – and make sure they swab the sores to check to see what kind of sores they are. If your wbc is low, you may want to ask for Neupogen shots – that is what seemed to help me – once my wbc was up to normal levels, the sores seemed to back off some. I still get them now at 2 1/2 years post transplant, when I get run down and my wbc goes low. Do your best to drink some Boost or Ensures – to keep up your protein levels – they will be easier to take than actually trying to eat food, but make sure that you do get some nutrition – because if you lose too much weight they will give you a feeding tube and you don’t want that – trust me!!

    Feel free to email me anytime – I am sorry that I missed you in the chatroom this week!

    I am still cheering you on from steamy hot LaSalle, Ontario!!

  2. helpsavewinnie says:

    Hi Cheryl! OMG, I never knew I could love a word – undetectable – so much! When I saw that word on the report, I just stared at it as if it was love at first sight! Believe me, I pulled out the report and looked at that word over and over. It was crazy!

    Yeah, kinda really hoping my mouth issues really are GVHD so that there is the graft vs leukemia effect! Too bad I can’t drink Ensure, it’s too rich for me and causes diarrhea, which causes a whole host of other problems. I’ll make sure I get enough food cause I don’t want a feeding tube!!! I’ll also watch my wbc’s and neutrophils – they were incredibly low 2 or 3 weeks ago. Doesn’t help that they’re also weaning me off the immunosuppressant meds at the same time, so “things” are starting to act up.

    Talk later!

  3. bdworman says:

    I still have some taste issues, Winnie! It will come back..hang in there. Nice to see you in chat, hope you can come again!
    MIchelle~www.bmtsupport.org

  4. Eunice says:

    As I was praying tonight, you came to mind and I had to read your blog to see how you’re doing. I’m so glad to hear your amazing test results!!! Woohoo to day 84!!!! I’m counting to day 100+ with you. Praise The Lord! 🙂

  5. Gael says:

    Great news Winnie!!! So happy to read this update.

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