Some Improvements Day + 52

Well things are still going good, a bit better than I personally had even thought. Yesterdays visit to the Clinic was full of encouraging news. For starters, my body and I earned the weekend off and we do not need to return until Monday.  I could make a habit of this. The second thing is that we are going to try and go the weekend without TPN assistance. That means I have to eat everything my body needs, 2,200 calories and 80 + grams of protein. Normally that would be very easy. In fact, I am sure I have had a single meal that had more in it than what is required. The hard part is that my gut and esophagus are still a mess and I am stuck to a very limited diet (no diary is the biggest issue). So we have our work cut out for us this weekend to make sure I meet the nutritionist’s requirements.  Wish us luck.  I could also mention that I did have an outing with Tracey on my first day off, we went to the grocery store and Target. It felt great to see and do things that once seemed so mundane.

So things continue to go the right direction, some parts are still slower than I would like but I see progress.

Tony

Day +50

OK I know 2 posts in two days when I said updates are going to be slow. This one is just to recognize that we have reached day +50, since transplant. That’s takes us halfway through the tuff part (the first 100 days). Its just another mile stone, but one I have been watching for. I actually think I can see the next 50 going faster than the first. Let’s hope so!

I also wanted to let people know, our freezer and fridge are full up (no more room). You all have been so kind and given us so much that we have run out of room to store anything more right now. With me on TPN and not eating “real food” there are only two people really eating all your glorious foods.  So if you could hold off for a week or two to give us a chance to catch up,  that would be great. We will let you know when we need the help again but for now we need to catch up a bit.

THANKS ALL!

Tony

Day off ! (+49)

This may not seem like much but Mayo just called in and said the doc had modified my clinic schedule. What does this mean? I have a “day off” no doctor, no drive in, I get to do as I please for a full day. I have been going to Mayo or in the hospital for 58 consecutive days now, so this is a big deal. Maybe a bigger deal for Karen and Tracey but still a big step for me.  All this really means is that things have stabilized enough that they doctor will not be making dally changes to my meds. It doesn’t mean anything has really changed just stabilized for a bit. I will go in the next day just as usual and we will see if a can add additional “days off”.

Just a side note people may have seen request for gas cards in the care calendar. Karen added this to give people (mostly out of towners) another idea to let “them help”. As they can’t cook (or visit) and what to help, this was just another idea. I am sure you all understand but I felt the need to explain.   Don’t get me wrong we are racking up the miles with 80+ miles round trip to Mayo. OK enough of that.

As Always THANKS EVERYONE!

Tony

Some Photos Day +46

Just wanted to share a few photos. The one of Karen shows an amazing gift from her students. It is a 1,000  hand made cranes. A Japanese proverb, if you make a 1,000 cranes your wish will come true. The other one shows our med table to give a visual for all that Karen and my caregivers are dealing with. Finally the one of me is just because I had a good couple hours.