day 87

I am back on prednizone due to the symtoms of the gvh disease reappeared in my gut after just five days off of it so they put me back on 30mg daily and are decreasinging gradually until Dec. 13th.

They have mostly completed the discharge testing, dental exam, lumbar puncture with a 4th dose of chemo,last bone marrow bx for a year they say, a photo session for my skin to compare, a skin bx, blood cultures 2x per week, that was my last week. chest xray. I have physical therapy weekly with printouts of excerises to to everyday. They are simple, or I would have called them simple before but they don't feel that was now, Prednizone causes a lot of muscle atrophy and this is to counter that.

We give up the flat on Nov 10th. So we will be home after that. We are home as I write, we have been bringing things back over here gradually. I took way too much stuf. Have'nt been interestested in using it. I know I am going to be weeding out a lot of stuff once were back.

It will be a big transitition moving home, we have been gone 7 months. and it is a big security blanket being minites from the medical center than responds immeadiatly if you call with a concern or question. Love to all Thankyou once again for all you love, thoughts and prayers, I am so blessed. M

Post Transplant day 70!

Wow!
seventy days! Of course, from where I sit that sounds like it's gone by quickly. Of course, I'm not the one with leukemia.
So, more good and bad:
last weekend Margie and Robert were able to get the weekend off and go back to the island. The report was that they felt relaxed after a couple of days of naps and relaxing. Sounds like just the ticket. Colleen and Rod were back from seeing Alyssa in Colorado and came back with colds, so they couldn't visit with Margie, but probubly just as well as she needed to just nap the weekend away...

In the not so great category, she's vomited a couple of times in the last 24 hours so instead of going to the island for the weekend today, they're at the Hutch to likely get an infusion of some type and maybe a readjustment of meds. Prednazone may be back on the menu. So, I'll report as I get some new info on this change.

Margie's walking approximately a mile a day which is great as her body has taken such a toll with this cancer and treatment, her muscles are essentially re-learning their movement. The p.t has also told her to only increase weights by one pound at a time (she started with a one pound weight a week ago, to illustrate how she is starting at square one as it were)

All in all, Margie is looking good in the big picture, but her incremental steps are small, so I know that it takes everything to keep the resolve and determination. If anyone can do it, Margie can.

Love,
kathleen

"It's getting better all the time..." -the beatles

Day 63!
Just posting a list of bits and bobs (again) based on my conversation with Margie yesterday. I usually jot everything down as we talk but it so happens that I was on my cell phone outside, so this'll all be from memory.

-The prednazone dose is down to 5 mgs, from 50 at the beginning.
-She's not experiencing the daily vomiting, thanks to her team diagnosing the GVHD and treating it!
-Margie and Robert don't have to go in daily for her infusions of magnesium and potasium, she can now take a supplement and also supplement with her food where she can.
-That means that at the Hutch, she'll still be going in for blood work as they still have to keep her monitored . Also for physical therapy, meetings with the nutritionists, her doctors and team. Overall though, She and Robert are experiencing a little less time at the Hutch and may also get to experience a weekend "off"
-She's trying to get out for daily walks

All I can remember for now.
Love,
Kathleen