AML: Ich habe eine gute Nachricht

Ich freue mich, jeden zu informieren, dass der Termin für meine Transplantation gesetzt ist. Ich bin zu haben, um meine neue deutsche DNA zu umarmen.

In other words:  I am pleased to inform everyone that the date is set for my transplant. I am going to have to embrace my new German DNA. 
 
Why all the German?  Turns out I have an international donor.  My match is from Germany.  It makes sense really.  I've already got the lederhosen (see pic), an affinity for beer and sausages and an unnatural appreciation for all things David Hasselhoff.

The transplant is tentatively scheduled for April 28th or May 3rd or 4th.  The scheduling is a little difficult because of the international donor.  The donor cells will be harvested in Germany and sent to Mayo.  So timing is very important. 

I don't have all the detail yet.   In fact the whole thing really caught me by surprise yesterday.  A scheduler from Mayo called and started listing off dates and ton of procedures and tests and that was it.  No input from me.  No prep or time to really comprehend what I was about to be told.   Just a sudden call from someone I had never talked to, "Hi Mr. Grann, I am calling with dates and times related to your transplant." So honestly I missed about half  of what she rattled off.  What I did catch is April 12th (just two weeks) I need to be back in Rochester. 

I managed to asked how long I needed to be there this time, assuming this was just a few days of tests again.  They said that's when everything was going to get started. So it will be the 100 days.   This kind of floored me since all guidance I had to this point had afforded me a few more weeks at home.  Also consider that I still won't be recovered from this round of chemo by the 12th.

So, after that 3 min conversation, I got off the phone and everything suddenly sit me at once.  I had just lost 2-3 weeks of time home with my family (from what guidance I had been given before).  All the work and plans everyone had been putting together for helping out at home and the benefit were suddenly not going to work.   Jon does not do disappointment well. (My wife and mother are nodding their head in agreement). 

Here's a thought for anyone (friends, family, nurses, doctors) that is interacting with someone like myself and a situation like this.  Cancer has taken away so much control over my life and decisions at this point.  One of the most helpless feelings I imagine me and my chemosabes feel is that we are out of control of the things happening to us.  There is so little we actually have a say in or can exercise any control over.   Maintaining some control, provides comfort... losing more control, frustration.  

Having some say in the timeline related to the transplant seems a reasonable expectation.

I have no doubt in the reputation of Mayo clinic.  I have no doubt my care there will be stellar.  In fact, from all evidence I see, it is a well oiled machine.   To this point however, it has been quite impersonal (huge contrast to Sanford hospital)...  Just another body shuffling through the halls.     

To make a short story long, then short again...  I called Mayo back and requested they push everything back at least week (to the 28th or the first week in May).  I get the impression that they had put some effort into building the schedule they had (i.e. scheduler was not impressed).  Everything still needs to work backwards off of when the donor can make it work, but we can request some dates and see what happens.  All that we had been planning should still work (cross fingers)...  I hope to be able to join everyone at the benefit as planned. 

der große Tag rückt näher...

AML: Round 8 Chemo & Home again

So I got a nice surprise yesterday afternoon.  My Oncologist stops by the room in the hospital and says "Are you ready to go home?".   No smart ass answer needed.  I was very much ready to go home.

So as of yesterday afternoon, I am once again a free man;  so to speak.   My counts are still in the normal range, but will drop fast as the chemo takes effect.  I'll have blood work every couple of days.  For the moment I am not on any meds, but that will change as soon as my immune system is compromised., which will be just a few days.   I kind of forgot about the cumulative effects of the chemo.  I can already tell this one has me tireder then the last. 

On the home front we are once again blessed.  There are so many people helping to get us prepped for the bone marrow transplant.  Now, I've never been one to mind having the attention of others... for inconsequential things, but accepting help like this from others is a bit of a struggle for me.  For good or bad, I really don't have the energy to put up much of a resistance right now.

Turns out maybe we needed the help.  As I've allowed myself to think about it, there are so many things around home that need attention.  Normal upkeep stuff that as my energy level started being affected two years ago (wow, I've lost track of time), have just never got done.  And thinking ahead, we need to get addressed so that they are not issues for me or anyone else during my recovery. 

So here's what's going down.  The church youth group has volunteered to stain our deck.  Someone else is coming to power rake the yard.  My sister has organized a work day to help Andy get the patching/painting she wants done inside while we rebuild the kids swing set in the back.  Somehow my 4 little ones are not so little anymore.   It will be wonderful to have everything done and easy to maintain for the year.   Considering the rotation of caregivers and family members that will be helping with the kids as we deal with the treatments, it should make everyone much more comfortable. 

Then there is the upcoming benefit.  I will save that for another post.  I am still processing all that is going on.  I just want to extend the invite to everyone to hang out with us for the evening of April 21st in Volga.  One big celebration before the next step.   I'll never be able to say thanks enough for all that people are doing, but I'll try a bit harder not to fall behind in that too.  

Thank you all so much...

AML: HLA Typing ... A is for Awesome

Even though we are waiting on results from one last potential match, one of the five people tested will be selected for my transplant.  So with that known, I have a window for the transplant.  Late April to early May.

I mentioned HLA typing before.  I thought I'd elaborate to illustrate why the HLA typing has been difficult in my case. 

First, A well-matched donor is important to the success of the transplant.  It also means the new cells are likely to take to me and the chances of graft-vs-host disease is less.  There are usually 10 markers compared between me and a potential donor. 

They have identified several good (9/10)matches for me.  The one 10/10 match though is female with children, which they prefer not to mix genders of they can avoid.  So I have been told.  It lessens the chance for graft vs host. 

Ilustration A on the right illustrates the markers they test for and a 10/10 match.  Illustration B shows one marker different and a 9/10 match.

However, after the doctors at Mayo met me, they felt it important to test for an 11th and 12 marker.   As you can see from illustration C the high level of awesomeness in my DNA has been difficult for them to find a match.  Hopefully this last person they are testing is either Chuck Norris or the guy from the Dos Equis commericals.    Can't argue with DNA.

New Look, New Address

Hey all,

Perhaps you noticed the new look of my blog.  It's much closer to the style and sophistication expected of anything associated with me.

Also, you can get to this site by using www.goaheadpokeme.com instead of the longer URL from before.

Just making it a bit easier to keep tabs on me...

AML: Chemo, Round 8.... Ding, Ding

Tomorrow will begin round 8 of chemo.  After this many rounds, I am starting to feel a little bit like Rocky. 

This is just a consolidation round to keep me in remission until the bone marrow transplant is scheduled.  Not much new to tell regarding my treatments right now. 

Good news; the lymph node surgery went fine.  The node was hard, but the doctor noted it was all scar tissue which was basically the dead cancer cells.  More evidence the chemo is doing its job. 

On another note a benefit is being planned.  Family and friends are putting the thing together.  Since my treatments have happen in Sioux Falls to this point, there have been few extra expenses beyond what is covered by insurance.  With having to relocate to Rochester for a while and Andy having to take unpaid time from work, the situation has changed and we are so greatful that people want to help. 

I want this to be a fun for all and it sounds like it will be. Mark your calendars for April 21st in Volga, SD.  Why Volga?  it's fairly centrally located between Carpenter, Brookings, and Sioux Falls.  It's a little tough to find a place on short notice and more importantly; small towns are easier to work with on the furnishing of adult beverages.    

Check back for more details as it gets closer.

AML: RIP Waldorf and Statler

Next Thursday I am to have another lymph node in my neck removed.  I had one removed on the right side of my neck back when they did the original biopsy that helped diagnose this whole thing.  Now they are removing the one on the left side of  my neck. 

When  I found out I relapsed right after Christmas, this particular cluster of lymph nodes were the ones that swelled up.  The swelling is all gone, but one is still hard.  So my oncologist refered me to an ENT (ear, nose, throat) doctor with the instructions that if this one is easy to get to, remove it.  The Dr. tells me he's not too worried about it, he just wants it gone.  I think he'd prefer to have my tonsils gone as well but the procedure is too invasive considering the chemo affects my ability to heal.

We've done this before.  So I'm, not all that concerned with the procedure.  I kind of like the whole anesthesia thing and as I learned early on; when they perscribe pain meds, take them.   At least I'll have matching scars on my neck. 

As I ponder the removal of these matching pair of lymph nodes, I keep getting another pair stuck in my head.  Waldorf and Statler from the Muppets.  I love those guys.   So as my mind wanders... I picture the following conversation between my lymph nodes who will now be affectionately be remembered as Waldorf and Statler. 


Lymph node Statler - I hear the doctors are going to remove you tomorrow..
Lymph node Waldorf  - Why are the doctors going to remove me?
Statler - Cause the dentist was sick. DOH OH OH
Waldorf  - That makes no sense.  I want a second opinion. 
Statler - OK, you've got a horrible singing voice. 
Waldorf  - That's not what I meant, and what's wrong with my voice.
Statler - Well, can you sing tenor?
Waldorf  - What? 
Statler - Can you sing tenor, as in ten or eleven miles away from here. DOH OH OH!
Waldorf - That was a bad joke
Statler - I'd say that was a medium joke.
Waldorf -  A medium joke?
Statler - Yes it wasn't rare and it certainly wasn't well done. DOH OH OH!
Waldorf - Surgery scares the pants off me.
Statler - Are you sure you didn't just forget to put them on?
Waldorf - So this is it huh?
Statler - Yep, I guesss so.
Waldorf - As they say in France: adios
Statler - That's Spanish
 Waldorf - I know. I don't speak French