I have to thank God for today. I am feeling quite good. I am not in pain and can eat pretty well. I even went to Loblaws earlier in the week to walk around when there weren’t too many other shoppers around. I almost felt normal. Unfortunately, I’m afraid this may just be a honeymoon phase.

Earlier this week, I went to the hospital for my weekly appointment. The doctor told me that at or around Day+60, they’re going to do a blood test and a bone marrow biopsy to see if the transplant got rid of my leukemia. Needless to say, I’m totally freaked out. The results of these tests mean so much to me. But all I can do now is to stay calm and wait for the tests and the results. There’s nothing else that I can do. I try not to think about it. I just hope for the best.

While I was at the hospital, I bumped into a lady that had her transplant almost 2 years ago. She’s doing pretty well, but for some extremely dry eyes. There were 2 other patients there that I met at a patient get-together last fall. One of them was in extreme pain, but I didn’t ask what it was. And the other patient was in a wheelchair and was breathing from an oxygen tank. He was clearly very sick. Later, I saw him being wheeled into an ambulance. I pray that he is ok.

I talked to the lady who had her transplant almost 2 years ago. She told me that at 3-6 months, when the doctors stop my immunosuppressant medication, the risk of GVHD is very high. So, I could get a whole bunch of very painful and serious illnesses at this time, like pneumonia, shingles, skin rashes, mouth ulcers, etc. Hearing this really scared me. Here I am, feeling pretty good, and then she tells me I’m pretty much in the calm before the storm. Crap! I know that I may not get everything, or anything at all, but chances are, I’ll get something. I just pray that it will be mild.

After that appointment at the hospital, I had a lot of things to digest. And it seems like my journey is not getting any easier. It’s very difficult to see other patients doing poorly. It affects me and makes me very sad. But I know I need to stay positive. It’s very hard but I try my best.

The most important thing right now is that my test at Day+60 shows no leukemia left in my body. I will deal with everything else one day at a time. Dear Lord, please help me stay strong through this journey and help restore me to good health.

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10 Responses to Day+51

  1. Cheryl says:

    Ok Winnie – yes – things ‘CAN’ happen while they ween you off your meds – but that doesn’t mean they ‘WILL’ happen!! Everyone is different as you saw during your appt. There is no reason to assume these things will happen to you – you will be monitored by your Dr. and it will be up to you to keep him/her abreast of any things that arise. Stay strong – feeling good today is good – take comfort in small victories – they lead to big victories!! Keep your head in the game and don’t allow yourself to go to the “bad” places…this journey is not only one of the body but also one of the mind and the spirit!


    • helpsavewinnie says:

      Cheryl, I agree. Half the battle is mental and emotional strength. I’m going to try to keep my head out of those bad places. It will be hard at times, but I’m going to try my best!

  2. Father Bill says:

    Winnie: Thank you for your blogs. Your honesty about your humanity touches us because your spirit is shining through. Know that you are part of the prayer of St Luke’s Parish as we thank God for you and ask that you be restored to health.
    Again, to support your prayer, I remind you of the website Sacred Space.

    Fr Bill

  3. bdworman says:

    Winnie, the hardest thing for me to keep in mind are a statistic of ONE! At day 100, they removed my hickman and day 105 I got shingles. No real big deal considering the previous 100 days! They will monitor you carefully as they begin the weaning process. It is so hard to not dwell on the “what ifs”, but keep the positive going!
    See you in chat soon, I hope!
    Lots of Love from Lubbock,

    • helpsavewinnie says:

      Thanks for your comment Michelle! I won’t be able to come to chat for a while. I’m not ready. But when I am, you’re sure to hear from me!

  4. Catherine says:

    Don’t give up!!! We will pray for a speedy recovery!

  5. Debbie Loughlin says:

    Still praying for you Winnie, please keep me in your prayers too, have another brain surgery/tumor. Debbie Loughlin

    • helpsavewinnie says:

      Debbie, thanks for your continued support and prayers. You will definitely be in my prayers as well. Do you know when your surgery will be?

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