Day+23

Hi everyone! This is Winnie. I was discharged 2 days ago and am now settled into my new place, which is a condo downtown much closer to the hospital. I will be here for about 3 months, practically in quarantine, as my only ventures outside will be for hospital visits. And for the first few weeks, that will be 2 times a week.

So far, the blood counts remain good and stable. But it’s still early yet. And things are still working into their places. I am still working on learning to eat like an adult, but that will take time. Currently, to avoid major stomach pain, my meals consist of Ensure and crackers. Yup, that sucks, but it’ll keep me pain free (hopefully). My taste buds have not come back yet. That will take time too. Everything still tastes gross.

Currently, my doctors have me on 13 different medications and at 2 or 3 times a day, you get the picture! The pharmacist put together a matrix for me just in case I forget cause it is rather confusing…before breakfast, with breakfast, on an empty stomach, with a meal, before bedtime…

My doctors and I are watching and testing for any complications right now, like CMV (for which I am positive) and GVHD (which we are watching for). As soon as these pop their heads, we’ll need to treat before it gets out of hand.

I have no internet here yet, so please be patient if I don’t respond to every email or comment on this site. Please know that I know you care and that I have read your comments! And yes, your comments do help me a lot, keeps my spirits up.

I know those who have journeyed here before me tell me to be patient, but I am so wanting my old life back. I admit, I am very sad, especially when I hear that Go Train bell ring, going past my condo here. It keeps reminding me of when I used to take that stupid train to work, so normal, and so carefree. I can only ask God to give me strength and patience, and above all, ask that He has mercy on my body and soul. Oh, how I want to be a useful part of society again!

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3 Responses to Day+23

  1. Cheryl Thornton says:

    Winnie – you are a useful part of society whether you think so right now or not…what you are doing is paving the way for all the patients that will go to transplant after you…Each patient is a learning opportunity – so although its hard to hear the GO train whistle…remember that this is your new job for now – and work hard to follow the Drs. orders and to get yourself back in shape for the day that you will be able to take that train again…there will be frustrating times along the way but remember that this is your big chance to be CML free and off the TKI drugs that are good to keep the CML at bay but are really hard on your body over time…it may feel like the world is going on without you but you will get back on the carousel of life before you know it!!

    sending prayers from here in LaSalle Ontario!

  2. Chris says:

    Dear Winnie:
    I kinda like the trend you are going- you can post not long ago after a loooog period of silence ( i have to admit, you did scare me for a second) and now you are even out of the hospital! Keep trying your best and soon, you will get your normal life back!

    Enjoy your first long weekend after the hardest battle! Chat with you later. I will continue to pray for a better and sooner recovery!

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