A Basket of Sunshine!

What to say – How to say it ? We just don’t know how. Today Karen and I received a “sun shine package” from her friends and co-workers. It is such an amazing and thoughtful gift, once again it came just as we needed it. Somehow, people just know when we need a lift, but this gift is truthfully above and beyond what we would ever expect. Knowing you have these kind of people on your side can only bring you confidence and courage to continue on and be strong. Everyone’s support is what helps us remember we are not alone in this and that people are thinking of us and we will get through this.

It truly is impossible to express our gratitude for this gift and everything that people have been doing for us over the past few months. I don’t know how but someday we will “pay it forward” in some fashion, I promise.

ONCE AGAIN - THANK YOU EVERYONE  

Day +56

Just a short update. While things are improving in the gut area I am still having issues with my blood pressure. The doc's are sending me to a specialist but we can't get in to see them until the 19th. So I don't expect anything 'til then. The issue with my blood bressure is that it drops very low when I stand up- so low- to the point I cant stand up.  I have learned to stand and wait, as the dizzy/light headedness passes but some times it is too much and I need to sit down again. This may just be a side effect of meds and recovery but we need to check it out. Other than that things, are status quo. Oh, I should add that yesterday was a "day off" and Tracey and I did a bit of exercise and walked the isles of Costco for a bit. I have not been on my feet much so it was good (but hard) to walk around.

OK that's it for now, take care everyone.

Tony

Two days off- too much (Day +53)

So it looks like my body may have had a bit of Mayo withdraw as I am once again back at the clinic. It is turning out to not be that big of a deal but this morning I had three boughts of near fainting and had to fall to the ground. Karen was there to help and although my butt is a bit sore, I am fine. It appears that my blood pressure had gone too low: 89/68 and the culprit is fluids. We put so much effort in watching all my intake and still my body wants more. It is recommended that I drink a minimum of 68oz a day and yesterday I had 80+. Yet all indications from the clinic staff is my body wants more. They are doing some other blood work and stuff but it looks like just a big bag of fluids will turn things around. Maybe next week we can try again for 2 “days off”.

Tony  

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.