Day +58


Remember this?! It’s baaaaack. H

It’s snowing. Big, wet, white, “winter has arrived” flakes.  While I know that this means that my life gets more challenging (think boots, ice, and cold hands that don’t work) it IS pretty, and snow makes everything feel ‘Christmasy’, don’t ya think?

My apologies for leaving you all wondering what has been going on over the past few weeks, but honestly, it’s been uneventful.  I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my port, and change the bag on the infusion pump, so we’re pretty self-sufficient. The nurse only comes once a week to change my dressing.

IMG_1944 edited.jpg

The big bag, was my initial dose, everyday for two weeks. The little bag is my dose now, once a day.

The biggest news (!), is that I’ve reached the halfway point. Halfway to +100 days, the milestone for the transplant doctors before which infection is most dangerous, and things going sideways are the biggest concern.

I’m feeling pretty good. My energy level is already better than it was before the transplant (!!!), so that’s a great sign. I haven’t noticed a change in my CIDP symptoms, but we’re not expecting to, this early.

Remember that the goal of the transplant was to STOP the progression of the disease. They’ve been very clear that they don’t EXPECT an improvement, and if things do improve it will be several months (or years) from now. We stay hopeful.  Right before the transplant, I had another little slide in my symptoms, and it means I lost the ability to write by hand, and the walker has become more of a necessity. Even typing is slower, and less comfortable than ever. So…we’ve all agreed that even if I can reverse those things, we’ll be ecstatic.

My appetite is pretty much back to normal, while I do still seem to be nauseous more than I would like.  I’m not taking anything on an ongoing basis for nausea anymore, having just stopped the olanzapine a couple of days ago. I’m only taking pills four times a day now, instead of six!

I’m still bald(!) and waiting impatiently to see signs of growth. I think it will definitely help my anxiety once it starts to grow, because right now I still LOOK sick and that is proving to be more stressful psychologically than I thought it would be, especially when leaving the house.

Bald head.jpg

My STILL bald head

On that note, the hubs and I have been to a couple of matinees the past few weeks (when there is almost nobody there), and I have been shopping quickly, and at off peak times. I’ve been on many car rides, and started driving again (yay!) last week.  I remain hyperaware of my surroundings and anxious about being around people, but I have been cleared to eat out again and so even had veggie, and cooked SUSHI after a movie last week! (small victories!)



4 responses to “Day +58

  • Joanne Perreault

    Happy 😀to hear that all is well. Was getting worried, we hadn’t had a blog in a while. Yeah all is good. Keep strong Jess! Always thinking of you. 🤗👍

  • Sylvia/Ken Ransom

    Good to get your update, think about you so often….the snow is pretty and I agree it makes things Christmassy
    As for your hair, sure you are looking forward to seeing growth but until you do, you a have a beautifully shaped head (is that any constellation??), and are still your Lovable self…take care, hugs to you, hubs and mom😘😘😘

  • Sylvia Carscadden

    HI Jess
    l think you look great! and was so good to hear from you. I was wondering how things were going but you were gadding about.

    Maybe you will have fuzz for Christmas but who cares. Sounds like encouraging news. Sending love to all of you

  • Lisa Brankley

    Dearest Jessy, SO good to read your update and hear that energy is up, appetite is up and infusions are down! Over halfway must feel so encouraging….and so glad that you are driving and able to be out in the snow and for little outings, especially in this season…that must be mentally helpful and and invigorating. Isn’t home care a lovely option, when hospital visits truly aren’t needed? Thank goodness for it.
    i love you Jessy, Lisa

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: