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. 

AML: Down Periscope

This will be a brief update.  I will have more to tell tomorrow.   Things are still going ok here.

About a week ago I had a few days with no nausea and thought my appetite was coming back.  This week was a bit of a setback.  Nausea returned in a big way.  Some new meds seem to be helping with managing the need to spew, but my appetite is gone again.  My intake consists of watermelon, cucumbers and carnation instant breakfast (milk chocolate) drinks.

I would like to tell the folks at Carnation  that if not for your drinks... I'd be in rough shape now. 

It is possible this nausea is a symptom of graft vs host.  So tomorrow they are going to scope my upper GI and biopsy if needed.  It will be good to have answers.   I don't quite understand why they have to go in rectaly, but it is probably Mayo just doing a thorough job like always.  (ok... So maybe it is not done that way)

I'm down to 235 pounds.... If anyone is keeping track. I've stopped taking the magnesium pills.  I tried to tell everyone that I'm just not absorbing those pills.  Now that I am on the self infusions, my magnesium is stable.  Now, if only we had done that a month earlier. 

I'll add more tomorrow if anything comes up.  Good night all. 

A Birthday Surprise

So last year I was in the hospital and the team from work sent me a birthday cake.   Here is that cake (right).   Yes that is Richard Simmons.

The text says "Hang in there. Keep on Dreaming"

I thought it fitting that I should provide them a cake this time around.  So embracing my new German DNA I put this together.   Hyvee in Brookings did a great job...  It turned out awesome.   Gotta say I am looking pretty good. 

I am told there were some awkward looks when it was picked up from our front desk.  I am also told I am quite tasty. 

AML: Day +47 More Family Time

So suddenly last Thursday most of may nausea goes away.   I just woke up and felt pretty good.  Other then that.  Not much has changed.    I have has some minor nausea the last couple of days, but a lot better then before. 

The Doctors say I am doing exceptionally well.  I still go into the clinic twice a week.  but the visits are pretty short.  I have this sunburn looking rash on my arms and upper back that has just come recently.  So i guess that will be a discussion topic for tomorrow. 

i have has a bit of muscle pain earlier in the week... mainly in my calf muscles.  But that was a ton better today.   once she herd I felt better my mother (who is my caregiver this week) tricked me into going for a walk.  So I did more walking today then I have done for a while.  Not much soreness so she'll probably keep nagging... 

Rochester is an interesting town.  there is a lot of pride in their city here and there always seems to be a bunch of things going on.  the surprising thing I picked up on is that Rochester is smaller then Sioux falls by about 45,000 people.   For example... every Thursday they block off some streets downtown and have something they call Thursdays on 1st and 3rd.  there are probably around a hundred food vendors and booths at this event.  they do it every Thursday all summer. 

We've been able to sample some of the food that the restaurants downtown offer.  If fact the fish and chips from Newt's was so good.  we went back to the real restaurant on Friday for more.  This week is also Rochester fest with a bunch of food stands and events going on.  this event feels more like a fair.   So my lunch today consisted of cheese curds and onion rings and little bit of a corn dog. 

I still have an exceptionally small appetite.  That may not change until they take me off some meds. 

The kids and Andy were here for Fathers Day and my birthday.  It was tough getting a room that weekend so I put them up at a nice old hotel downtown (Kahler Grand).  the novelty of staying there is that the indoor pool was on the roof with a dome over it.  Kids got a kick out of it.   When Sat morning turned rainy we took them to a place with a bunch of inflatables and they had a blast.  We learned Jonah has no fear and was following the girls everywhere he could.  I don't know what was funner.  Watching him climb everything or having Andy annoyed at me for letting him do it. 
We also took the kids to Silver Lake Park in town to feed the geese.  actually we went twice and Nevaeh got a little scared by how may geese she had around her but she asked to go back the next day and we did.  She did much better then.   We took them to a giant playground and they had a great time there as well.  But, the weekend went to fast and they headed home mid afternoon Sunday. 

You may notice an extra young lady in the photo.  Alex watches Alivia and Nevaeh in the summer so we don't have to put them in daycare.  The girls love her and Andy brought her along to help with the kids during the long drive and hotel stay.  You will never meet a more responsible 14 year old.   She is very special to our family.

In all I am doing fine.  My magnesium is holding as long ans I am doing my self infusions.  Nausea is better... but does remind me every now and then it's still there.  My energy level is increasing.  Hair is even hinting at growing back. 

I'll leave you with a a pic of Jonah trying to keep up with his sister's in the pool.  He is extremely quick to pick up on things.  Grandma had him kicking and swimming all over.  Note: I have the same facial expression when she suggests we go for a walk...  But I think he was having fun. 

AML: Good News, Good News

So there has not been much to tell lately.  I continue to do pretty well.  Just some lingering stomach issues and a mild rash.  Both of which I think are being caused by the meds and not from the actual transplant.  In other words, no Graft vs Host symptoms yet.  Keep in mind we should see some minor GvH issues, but it's early and they have me on drugs to prevent it for now. 

On to the good news, good news...
Last Friday during labs they ordered a couple of tests to check what percentage of my cells were my cells and what were the donor cells.  There are 2 tests one for t-cells (immune system) and a different one to check the platelets, white blood cells and  red blood cells.  100% of my blood cells (platelets, WBC, and RBC) are donor cells.  It can't get any better then that.    90% of my T-cells are donor cells and 10% are mine.  This is to be expected since I am on immuno-suppressant drugs.  When they wean me off those it will go to 100% donor cells. 

So this is good stuff.   Day + 38 and donor cells are doing their job. 

In other news...   I had been having to go in for almost daily infusions of Magnesium.  The tachrolimis causes me to lose Magnesium.  This would take anywhere from 1-4 hours and kept me tethered to the hospital.  On Saturday we started "home" infusions.  I get shipped a bottle of magnesium and saline, and can infuse myself each day.  It is very easy.  And the best part is no more hospital.  I have transferred back to the clinic and only go twice a week now.  Mondays and Thursdays. 

Only down side is I seem to be a little sensitive to IV magnesium.  I bothers my stomach a bit... but heats me up (fells like I am cooking from the inside out) and causes sore muscles or discomfort I have to be a bit more significant.  We're experimenting with when to do the infusions to avoid this.  I am thinking we'll probably start doing them at bed time.  Hopefully I can just sleep through it. 

We'll see.  The magnesium is the only major complication I have at this time and it really is minor compared to what others are going through.  I credit all the prayers and good vibes for how I am doing so far.  It's all been good news...

The kids will be up this weekend again!