AML: And here we go again...

This is Andy writing today.

Jon last posted at the beginning of October, when he was dealing with his newly found diverticulitis and had to stay in Rochester for a few days. Jon was sent home after a few days with some heavy-duty antibiotics, but at least he was home. Some of the side effects of the antibiotics were a little weird: an upset stomach, joint and muscle pain, but they were consistent with the expected side effects. But if you would have asked how he was doing, I would've said he was tired, but good.

Jon goes in weekly for bloodwork, so he went in as normal in the afternoon on Tuesday October 16th. Usually the Dr.'s office calls to say labs are normal, but there was no call Wednesday during the day. We were thinking well maybe no news is good news. So I left with the kids to take them to choir, came home later and put the kids to bed. And then Jon told me the news: Dr. Darabi had called while we were gone. Jon's leukemia was back.

*Thank you Dr. Darabi for keeping Jon on the phone for awhile once you found out he was home by himself when you gave him the news.*

Jon had a bone marrow biopsy the following day and then that night we started sharing the news with the kids and our families. Jon was admitted on Tuesday the 23rd to start his chemo, but in the meantime we headed out to the farm for opening weekend of pheasant season.

Every year, Jon and the usual group from his hometown area - friends and family, get together to go hunting. Jon wasn't feeling great - okay to be perfectly honest he felt completely awful, but he sucked it up - so he blocked and he shot one pheasant.

So Jon checked into Sanford here in Sioux Falls on Tuesday night, he was still fighting some stomach issues so instead of starting chemo right away, they did a CT scan of his stomach and a GI scope. They wanted him feeling good and able to fight before they started his chemo. Chemo finally started Friday night. He gets it once a day for 5 days. This will destroy his immune system, so he'll be in the hospital until his immune system is back and able to fight off infections, which typically takes 3-4 weeks. As far as what's next we're just focusing on getting Jon in remission and then we'll take it from there.

Jon's had alot of visitors this week, which is just so wonderful. He loves the company and it provides a good distraction for him from being stuck in this room for a month. Please don't hesitate from coming to visit him, just give him a headsup that you're coming and make sure you're not sick.

Thank you all for your prayers, we need them now more than we did before.

AML: Update

Once again it has been a while since I posted.  There is a lot to tell, but I think I am going with the crib notes version tonight. 

I continue to do monthly checkups.  So far so good.  Had a bit of a surprise last week.  The night before my checkup I had a bit of pain in my abdomen.  Thought it was a bladder infection... Turns out it was Diverticulitis.  It's an infection of the large intestine.  Not all that uncommon and might not be related to the transplant.  Regardless it is an infection and I am still on immune suppressants.  They admitted me for 2 days then sent me home on some powerful antibiotics.  Ironic thing... the infection is gone, but the stomach discomfort (side effect of antibiotics) is almost as bad as the infection. 

I was just beginning to forget what it was to be in a hospital...  BTW, the care @ Mayo is awesome.  Food is horrible.  They could take a cue from Sanford in this area. 

Prior to this last checkup, life has been rolling along.

Andy & I attended a celebration for Mark and Patty (Mark had his transplant a year ago).  It was great fun and I got to see most of my favorite nurses from Sanford.  They hardly recognized me.   I also got out of the hospital last week in time to make it to a benefit for Becca.  I mentioned her before.  She recently relapsed and has just decided to undergo a second stem cell transplant.  I meet her and her family at the benefit.  She is a very special person... please send prayers their way.  (Becca's Blog)

I am working mostly full time.  Managed to get to a Royals and Twins game before the end of the season.  Golf game has had its ups and downs.  Looks like clubs will be retired for the year.  Andy and I had a fun time at a wedding for a coworker last weekend.  Lots of time with the kids.  Since when did third graders become so busy. 

Embarrassed to say I often have to Google things to figure out what my 1st grader's math homework is trying to accomplish.   It seems now a days the best way to teach a kid math is to do whatever is necessary to avoid actually adding numbers together.   Ex:  To add  8 + 9.  They make these kids change the values to 8+8+1.  This is called a "doubles plus one fact" in case you wanted to know.  At least it is some consolation that Andy was just as lost as I.  Tune in next week and I'll teach you how to use a 10 frame to solve the same problem...   Whatever happend to good old flash cards.  \

Moving on...

Energy level still is a big issue.  My leg strength is also not recovering very fast.  Appetite is good.  (I've gained back about half the weight I lost).

I am slowly being weaned off my various meds.  My tachrolimus (immune suppressant) is down to .5 mg a day.  (it used to be 2mg which is a pretty good dose).   I will soon go down to .5 every other day.  Other GvH related meds are lowering as well.

I find myself seeking out some new experiences.   Not so much a bucket list, but some extra motivation to experience new things as they come up.  Often it's food.  The last few weeks I tried goat (Indian: goat curry @ Bombay Palace in Minneapolis) and a buffalo sirlion(Wild Sage Grill in Sioux Falls).  Both were great.    Trying to line up a couple fishing trips (anyone want to come fishing in the gulf Thanksgiving weekend?).... and then, who knows. 

AML: Graduation Day

Time for another trip to Mayo.  Andy & I left Tuesday afternoon for Rochester.    The landscape has changed quite a bit over the last few weeks.  With the dry summer, most of the crops are starting to turn.  Things look better along the way then they do back home, but it still seems early. 

This trip was fairly routine.  Just updates on my blood work.  Most of these tests come back fairly quickly.  Everything is holding good in the normal range.   My liver and kidney functions are good.    I was a bit nourvous this time because they have been lowering my immunosuppressant (Tachrolimus) meds.  When they do this, graft vs Host (GvH) can show up.   

In fact, just a few days after lowering my dose (.5 mg twice a day) I broke out in a rash on my arms and I noticed some minor stomach discomfort.   We started a steroid cream for the rash and the stomach discomfort would pass quickly.    If the skin and stomach is the extent of my GvH I’ll be happy.  Those that deal with liver or kidney issues seem to have a tougher go of it. 

The doctors will continue to lower the Tachrolimus medication but will wait a week or so until the rash resolves.  They don’t want things to get out of control since it is relatively minor now.  They are doing another Kimerism study to see if the lowering of my meds allows the donor cells to take over the last bit of my immune system.  We really need that to happen this time. 

I’ve put back on about 10 pounds and have to admit that looking back to the beginning of July, I looked pretty tough.

The biggest news of this trip is that they removed my chest port (Hickman).  Since the line was tunneled under my skin, I had assumed they would knock me out to remove it.  Instead, it was done with some local anesthetic and a good tug.  It was pretty quick and mostly painless.  The nurse referred to it as my graduation.  I guess it is appropriate that since I have 2 birthdays (my transplant day) that I have another graduation.   For me this is an especially big milestone and I am happy to have those tubes gone. 

We don’t return for another month and I’ll admit to becoming pretty fond of Rochester.  It is a nice city and has a ton of great food options.  We tried a couple new places this week.  Twigs was fun as they have this thing where you cook your own meat over a hot rock they deliver to the table.  We also tried Chester’s which is right by Mayo.  I wish we’d found that place before.  It was fantastic and I highly recommend.   We even managed to catch up with my transplant twin (Dale).  We had our transplants the same day.  We had a nice meal with Dale his wife, Jean and their daughter. 

I was a little strange coming back to Rochester this time.  Time is a strange thing.  I guess with me going back to work getting back to more of a routine that the mind tends to start letting go of all the discomfort of these last few months.   During my recovery I would often go to the movie theater to pass the time.  Andy and I went to the movies during this trip and the moment we walked into the theater, it immediately reminded me how bad I felt last time I was there.   The smell of baby shampoo also brings things back.  It has only been a few weeks, but it sometime feels like it has been so long ago.  

Last Monday was Labor Day, exactly 2 years from when this all started.   I’ve spent much of those two years in hospitals and away from my family.   Priorities and perspectives have certainly changed… but that is a story for another time.  For now, all is good.  

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. 

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.