Uplifting: John 5:4

So I get a email from my sister this morning.   She woke with the sudden need to refer to John 5:4 in the Bible.  Remember 5/4 was the day of my transplant.

Here is the passage for John 5:4

For an angel went down at a certain season into the pool, and troubled the water: whosoever then first after the troubling of the water stepped in was made whole of whatsoever disease he had.

Now... What do you think about that?  

AML: Day +3

So I didn't post yesterday.   Not much to tell.   Today is similar. 

I go to the hospital at 9:30am each morning for blood draws and injections or whatever else I may need.  Every other day I get a dose of methotrexate.  It's a low dose chemotherapy that is supposed to suppress my existing immune system while the new on takes hold. 

For the next 7-14 days, by counts will be falling and then we expect to see evidence that the new cells are taking over.  Once the new cells take over, we start monitoring very closely for Graft vs Host disease.

The doctor that I saw today (I see whoever is on the floor when I am there) says I am doing quite well.  So that is  good news, I guess. 

I am having trouble eating and consuming enough liquid on my own.  So they put some IV fluids in me today. That should help with some of the lightheadedness I experience when standing (my blood pressure drops big time when I stand).   I did manage to get down a decent portion of Famous Dave's BBQ (chicken) today.    So if Famous Dave's is what I'll have to live on for the next few months.  I guess I can manage.   

Calorie heavy beverages are working pretty good.   Smoothies (the ones you see on TV where you add juice) and the Carnation Instant breakfasts have been helping be get some calories.  Starbucks or Caribou coffee seems to work as well.  Tons of calories there. 

The days seem to be passing quickly, so far.  But such a long way to go.  Thanks for all the prayers.  I am doing well. 

AML: Day +1 , Out patient

Got out of the Methodist hospital about 11:00.   Nothing all that eventful today.  Still having stomach issues.  Tough to keep anything down. 

It was a nice relaxing afternoon at the house though.  Was doing fine with keeping things down until I tried a little supper.  Oh well.  I think this will be the norm for a while.  I just need to stay hydrated enough to stay out of the hospital. 

Had to return to outpatient tonight to get an injection of methotrexate.  It is a chemo drug, but is given in such a low dose that its used in my case to control graft vs host disease. 

They are trying more antinausea drugs....  Perhaps we can find something that works. 

Other then the stomach issues, all else is good.  I wonder what all those new little cells are up to. 

AML: Day 0, Happy Birthday

So all the nurses here called yesterday (may 4th) my new birthday. 

The day was pretty basic.  Just lots of meds and waiting.  I still get sick to my stomach every time I get up.   None of the meds seek to be making a difference.  I'm pretty comfortable if I just lay down or sit still.

About 3:00 they started me on premeds for the transplant.  Lots of fluids and more anti rejection stuff.  Most all goes in my IV. 

Roughly about 730 my cells shoes up.   More drugs, tylenol, Benedryl and hydrocodone.  All just to make sure there was no reaction to the cells. 

The infusion of the stem cells was very simple.  They use a gravity drip because they don't know what going through an IV machine would do to the cells. 

It cells only took about a half and hour.  I was told there were about 7 million cells.    Other then the Benedryl making me both sleepy and fidgity.   That passed in about an your and I also the night.   So far so good.  

AMP: Day -1

So a bit more of the same today.  Radiation is over.  I am glad to be done with it.  The procedures were uncomfortable. 

I have some general bone and muscle pain.  Nausea is an issue.  Appitite is becoming an issue as well.  But it all going fine.  Hopefully things will get better as we get further from the treatments. 

My cells will arrive tomorrow at about 5 tomorrow.  If things are are on schedule, I should get them tomorrow at about 7pm.

There is another gentlemen here, Dale, that is on the same schedule as me.  He will get his transplant tomorrow as well.  Turns out they have family (kids) by Yale, but are from Rochester.  Small world.  Please add Dale and Jean to your prayer lists.   Couldn't hurt to have a few extras prayers bouncing around these walls. 

The Methodist hospital has been comfortable.  Staff has been great.  I am ready to be out.  Sometime Saturday probably. 

Big day tomorrow.  They keep calling it my birthday around here. 
 

AML: Day -2

Short one today. 

Just 2 more sessions of radiation left.  They are making me tired and I am getting sick occasionally.   Don't  know if it is the chemo or the radiation. 

I had a hemoglobin of 8.3. So they gave me a unit today.   Lots of resting today. 

Hiccups still an issue. 

They started Tacrolimus today.  It is is a drug to prevent graft vs host disease.  So it is preconditiong for the transplant.  It means I am attached to my IV again and will be until I am out of here. 

Doing ok, but ready for the next step...  Tomorrow should be pretty much more of the same as today. 

AML: Day -3, Am I glowing?

Best thing of today.  Catheter came out at 7:00 this morning. 

A light breakfast and then radiation at 9:30.  This is a full body radiation. I sit in a chair  strapped in with little sensors to track how even the radiation is traveling through me.  I sit for 12 minutes getting nuked from one side, then they turn me around and hit me from the other side. 

The actual treatment is uneventful.  I fell asleep.  I am a good medium rare with they pull me out.  They tell me I'll get a little "sunburned" from the course. 

After the radiation and free from the IVs, I got a pass from the hospital.  So Andy and I went back to the transplant house and relaxed.  Some friends of Tom my Aunt Rogene's from Yankton stopped by.  He had a double lung transplant and they were in town for a checkup.  It was good to visit with them.  They are staying in the Gift of life house too. 

We had a late lunch and I headed back for the 2 dose of radiation.   Skins a little pinker.   I mentioned I was nervous about the radiation.  Not so much the actual treatments but the side effects are what I am worried about...

I did get sick to my stomach today.  I think it's mostly because of mild nausea, but the hiccups set me off.  I am still dealing with them.  A side effect from one of the meds.   For some reason my hemoglobin is at 8.  It should not be that low yet.  They will check tomorrow and give me a transfusion if needed. 

No more passes for the rest of the week.  They start me on more conditioning for the transplant... so I will have a 24 hour IV again... bummer.  Still I should get out on Sat.  So I can manage. 

Going through Xbox withdrawals...  Enjoying having Andy all to myself.  Missing by babies.