AML: Back to Work

So summer is winding down.  The kids are back in school so we are back in a bit of a routine. 
Over the last couple weeks not much has happened.  I have been golfing a fair amount.  i guess that constitutes some kind of excercise.   Strength is very slow to come back.  i am told this is to be expected.   I guess i was hoping I would bounce back similar to all the rounds of chemo.   Not the case.  I did take Alivia  and Nevaeh going which they really enjoyed.  The plan is to take them again tomorrow. 

So the biggest news is i am back to work.  Not quit full time yet, but getting there.  This alone has helped to put some kind of normal back into a day.  Not much has changed in the last few months so it has been pretty easy to get back to it. 

I have not been back to Mayor for about three weeks.  Andy and i will head back to Rochester toward the middle of next week.  I am eagerly anticipating this trip because i am supposed to get port removed.  This is a big milestone and i will be happy to have it gone.  To prepare for this they have adjusted some meds.  i have stopped my magnesium infusions and replaced with six oral magnesium pills.  The immune supplements i am on cause me to shed magnesium so I am on these pills until we stop the tachrolimus.  They have been lowering my immune suppressentnts.  Right now i am only on these.5mg of tachrolimus twice a day.  hopefully this will allow immune system to go 100% donor.  As that happens we need to watch for the graft vs host (GvH)

I still appear to have few GvH issues.  I think my stomach is the worst of it.  I take 3 budesinide pills a day to manage that.  It is a weak steroid and has done the trick.  i have some like skin issues as well but that is about it.  Still have my allergies which have been very active as of late.  Claritin has been successful in managing that.  in all, there are still a lot of pills, but things continue to go well. 
Most people comment about how much hair I've got back already and more often how dark it is.

Many would not even be able to tell by looking at me what we have been up two these late couple of years.  Monday it will be exactly 2 years since my major symptoms presented.  Now that i understand how bad things were then, I am thankful that I have had these two years and hopeful for many more. 
I continue to benefit from your prayers.  My bloodwork and tests all continue to be what we want.  My appetite  is great.  The biggest issue is fatigue.  The next milestone is getting confirmation that my immune system has gone 100% donor. 

I will update again following our trip to Mayo next week. 

AML: Reality Bites... The Cancer Roller Coaster

It has been an up and down week.  Well personally it has been a good week, but there is a longer story to be told. 

Along this journey, we have met some wonderful people going through a similar experience with Leukemia.  I will make some introductions of the people I am going to mention... so we can keep everything straight.  There are others, which I will introduce at a later time, but it will be easier to keep people straight this way. 

Patty and Mark - I met in Sanford.  I was in the middle of chemo and Mark had just been diagnosed with AML.   I may have served as a point of frustration for Mark because I was going through my consolidation chemo which I handled quite well and he was dealing with his first treatments which were much more intense.  Still we made a connection.  Mark had a related donor so they put him on the path for a transplant right away.  He had his procedure done about a year ago in Houston. 

Betsy and Becca -  I have never met Becca.  She and her family live in Wisconsin.  I did meet her mother Betsy shortly before my transplant.  Patty had gotten to know her well and did the intro.  Becca's close to my age and has young kids like Andy & I.Becca had her transplant a bit before Mark. 

Jean and Dale - We met these two in Rochester.  Dale and I have the same 2nd birthday, that is we had our transplant on the same day.  Funny thing is though they live in Rochester, they have a daughter that lives in Yale (a tiny town close to where I grew up). 

Intros done. 
Becca and Mark had gone through their transplants prior to me and since we didn't know what to expect, we were thankful for opportunity to sit down with Patty and Betsy one afternoon to hear about things from the caregiver perspective.  These two wonderful women provided much comfort to Andy and I. 

I am getting somewhere... I promise. 

So this week Andy and I were off to Rochester for my +100 day tests:  blood work, chest X-ray, pulmonary (breathing) test, bone marrow biopsy, bone density study and a new Chimerism study (how much donor cells/how much my cells). 

We were walking back from lunch to another appointment when we ran into Jean just happening to cross the same intersection we were at the same time.  We got the update on Dale.  He is doing as well as I am.  No major graft/host issues.  He was back to work and even had his central port out.  To this point, his experience has been almost identical to mine.  Which is exactly what someone in my situation wants to hear.  We also learned that we have a similar feeling that because things are going so well, the hammer has to drop sometime... hopefully not.  For now all is good for my AML twin.

So my last appointment was with my Dr.  I like this guy a lot.  Most of my test results were not back.  My blood work indicated everything looked great.  My counts are in the normal range.  But my blood work has not been a good indicator of leukemia in the past which he was aware and commented as such.  The bone marrow biopsy was going to be the true test and we might have to wait until Monday (over the weekend) for those results. Still, I am doing very well in their eyes especially considering I had a non related mismatched donor.   They lowered my immune supression meds and are trying to switch me back to oral magnesium so I can stop getting infusions and get rid of my central port.   That was it for this visit.  He wants me to see my Dr in Sioux falls in 2 weeks and back at Mayo in 4 weeks.

So we are feeling good.  Nervous about test results but boosted by the good news from Dale.  On the way home we hear from Patty.  Mark is well, some liver and kidney graft/host, but the meds are managing.  Patty tells us however that Becca is not well.  She tells us a swollen lymph node has cut off some circulation to Becca's heart.  Later we get word that not only has her Leukemia relapsed, she also has T-cell lymphoma.  This family needs prayers and a miracle.   

With my results still unknown, this news shook both Andy and I. But with nothing really to be done about it, we continued on.  Like we have done for the last 2 years dealing with this. 

We arrived back home (after Andy submitted to some retail therapy at the Owatonna outlet mall) and settled in for a quiet evening.  The kids and dogs have been at the farm all week.  Andy's mom was in town and stopped by.  Unusual for me, I left my phone in the car.  After Andy's mom left, we were craving a Sonic cherry limeade.  We jumped in the car to head out and I saw a missed call from the Mayo clinic.   

Now when you are expecting test results on a Monday and they call you on a Thursday, logically the first thing that comes to mind is this can't be good news.  I checked the voicemail, expecting that they were calling me back in.  Instead the message was a very happy nurse reporting that my bone marrow results were back already and it was all clear.  She also added that Dr Hogan was quite pleased.  When that guy is happy, I am too. 

So here we are.  My news is great... others not at all.   But to help you better understand me and my fellow chemosabes, we always have this shadow following us.  Since I have relapsed before I fell especially sensitive to what lies ahead.  We seek out good news from those going through this experience, but it is different for everyone.  When the news is bad, we take it hard.  Not only do we feel concern for those who have to fight on, but it scares the crap out of us that are hoping our news stays good. 

That's the reality of what we are dealing with.  Some time reality bites. 

Day + 93... Look What I Can Do

Off to Rochester on Monday...  It has been good to have this two week break.  Then again there is comfort having a checkup each week and knowing all is well. 

Here's the good news.  Brent Kramer (Brother-in-law), Chris Kreul (college buddy) and I did 9 holes of golf this morning.  Believe it or not, we had to wait for the rain to stop, but it was a beautiful cool morning.  Perfect for my first round of golf this summer. 

Now, certain Mayo medical staff suggested that golf was not a good activity because I still have the central line in my chest. They mentioned that it might become dislodged, but what do they know.  They evidently spend too much time making people better and not enough time on a golf course.

Actually, since the Hickman line is on the right side of my chest, it doesn't really get bothered at all during my swing.  I suspected that it would be a non issue. 

Bad news for Brother-in-law Brent, he had to settle for the same score as me: a 45 on 9 holes @ Keuhn Park.   I've done better there, but all things considered (first time out and the fact that I am still not event to day 100), I am very happy with how things went.  I don't know what Brent's excuse was.  Chris, beat us both but he is in both IT and banking, so he spends a fair amount of time golfing... 

Great company (Thanks guys), perfect morning on the course.

I should thank Andy as well.  She was dealing with 9 little kids this morning.  Alivia had friends over for a birthday sleepover last night.  Hard to believe 8 years ago, we started our not so little family.  Nothing has been the same since and that is all good. 

 It is a good day.