Day +85: Day 100 in sight...

So a friend of mine was giving me a hard time yesterday about not writing for a while.  Sorry about that.  I do have a lot to talk about. 

I have been home for the most part.  Still going to Rochester once a week for doctor appointments.   This time away from Rochester has allowed me to make it to a couple of family reunions.  For most, this was the first time seeing me since the transplant.  Most are suprised at how much weight I havr lost (about 50 pounds) but every comments I am looking good.  I am glad I make both reunions this year.

Andy's Dad Ira, my father-in-law, took me to my appointments the week of July 9th.  I had been hoping that they would give me a few weeks off.  Unfortunatly that Sunday I started not feeling well.  No fevers, luckily, which would have put me in the hospital.   It turns out it was a bit of a sinus cold or virus.  But that Sunday and Monday, the day of my appointment were miserable.  So the doctors said they wanted me back that same Thursday.    Not allowed to go home.  So we settled in.   Then all of a sudden Tuesday afternoon, I just felt better.  Appitie came back and all was good.  Ira and I went out for Prime Rib and I ate a whole 12oz steak.  Which probably had been the most I had eaten in a very long time. 

Since I was feeling better, I asked the clinic to move my appointments up to Wednesday and they did.  I was so much better, so the doctors let me come home.   It was good to spend time with Ira. I am glad I styarted feeling better on this trip and we could actually enjoy the food and company. 

 Next appointment was the 24th.  Tom (Rogene's husband) took me this time.  Tom and I get a long quite well and it been great having both Rogene and Tom involved more with us and the kids through this whole ordeal.  This appointment went great. 

First, I didn't have to come back for 2 weeks.  Which will be the first full week of August.  At that time they will conduct all my 100 day tests that week.  100 days has been that huge milestone.  All my counts look great.  Liver, kidneys all doing great.  Rash on my arms was getting better.  Hair started coming back.   They took away a few meds and lowered my tachrolimus (the immune suppressent).  Now, this could cause some graft vs host to show up.  But a little will be ok. 

A few weeks ago, i had what is called a Chimerism Study.  The tests how much of the donor cells have engrafted in my body.  I had it once before. the results before were that my blood cells were 100% engrafted (100% donor).  My immune system was 90/10.  (10% still my cells).  This time the results were 100% engrafted on my blood cells, but 80/20 on my immune system.   The doctor said that this was not a big deal.  It was within the range of error on the test (it may not have really changed) and the immune suppressents I am on can prevent things from going 100%.  So lowering my meds, which they did, is an effort to make this "flip" or get to 100%.  They are telling me not to worry. 

So I am home.  Biggest issue is getting my energy level back.  It's not so much energy as getting my strength back.  I have lost so much muscle out of my legs that I get tired quickly just carrying my still big self around.  Appitite is good.   As long as things stay good, I'll likely return to work in a few weeks. 

Andy will be going back with me for the battery of tests.   Getting closer to day 100.  All is good. 

AML: Day +66 All Good.

Last week I had the all clear to leave Rochester and go home for the 4th of July.  Too dry for fireworks at the farm and the kids were disappointed, but we went to the Willow Lake Parade and the kids had a blast there.  I want to thank my classmates again for handing out fliers encouraging people to join the bone marrow registry.  Amy, Ann, Tara, Angie, Jill... and all involved.  Thanks. 

So after the holiday and long weekend at home, I returned to Rochester with my caregivers this week.  (Rogene and Tom, my Aunt and Uncle).   It's certainly a different dynamic and has been a lot of fun.  They really like  to eat. 

The news is all good.  I am eating much better.  So my weight is holding.  So no special appetite enhancing drugs for me now.  No nausea or really anything to complain about at all.   So I get to go home again.  I was a quick errand to run in the cities tomorrow (Tuesday) but I'll be headed back home Wed. 

Next Dr appt will be Monday and then maybe a few weeks off.  By then, we'll be close to the 100 days and then a bunch of tests to see where we are at.  Biopsies, hormone studies, thyroid checkup.  Just a bunch of stuff to make sure they didn't break anything. 

All is good. 

Headed Home... For a few days

This will probably be short.  It is super hot outside and it makes me tired.

I have the go ahead to go home for the 4th and the weekend.  So we have the car loaded to the gills and are almost back to Sioux falls.   We will head to the farm tomorrow. 

My GI scope on Friday found some minor Graft vs Host so that explains my stomach issues.  I am not in pain, I just don't want to eat.  I have to force it.  Coming from someone that quite enjoys eating, this is frustrationg. 

In fact, my doctors say I need to gain some weight back by Monday or they will have to add more meds to increase my appitite.  I dropped 6 pounds since Friday putting me at about 50 pounds lighter then when I went in.    The options are some hormone treatments or synthetic (medical) marijuana.  Tune in next week for the rest of this story. 

We surprised quite a few by showing up back home (carpenter) last weekend.  I tired easy, but there is no place like home.  Looking forward to haveing more time.  I return to Rochester on Sunday.  

I need prayers that my graft vs host does not get worse.  Otherwise all is good.