AML - Can I get a break here

Let's catch up.    I've been in Sanford since Dec 11 for more chemo. They let me out  the week before Christmas so I could be with my family.   The closer we got to Christmas the worse I was feeling.

I could only walk about 25 feet before my heart rate went through the roof. I was unable to eat.  I was very nauseous. As the days passed it got worse.   Long story short, I checked myself back into Sanford hospital.

Things quickly turned around for the better and I started feeling better.  It got to the point where I could sneak out for a few hours on Christmas Eve. I couldn't manage an escape on Christmas through.  They kept me a bit busy with tests. 

So my last posts indicated that we would do a bone marrow biopsy to confirm remission and then send me off to May Clinic for a consult.

We got some disappointing new this week turns out the chemo we tried didn't quite get the job done.  I still have Leukemia in my bone marrow.  Essentially we've tried a couple of "experimental" treatments, but I have not been able to get back to remission

So we started yet another kind of chemo immediately . Fun.

It's administered by shot in my belly, 3 shots at a time, for 7 days.  They are not that bad.

So here we are... I am struggling to get back into remission. It doesn't appear the transplant or the last two rounds of chemo. helped at all.  Unable to go home from Sanford because my counts are too low.  Not sure what options are left.      

There should be a silver lining somewhere, but I can't locate it,



                      

AML: Painkillers

I am starting to get some of my focus back.  If it holds I'll be writing more then I have been.

I've been struggling with appetite issues (I have no desire to eat), my gigantic cold sore is healing nicely now, but there were some very uncomfortable nights.  I have also been battling frequent headaches. 

As a result of the pain\discomfort, I've been going through a variety of pain med options.  Oxy-IR (Oxycodone) doesn't seem to work anymore.  Norco (Oxy & Tylenol) never seemed to work.  As it is now, a pain killer called dilaudid is the only thing that has been working.  Problem is it is rather short lived (45 min).  I can only take the dilaudid every 4 hours.  And I have been taking it pretty regularly. 

I am told I am not taking a high enough dose or getting it frequent enough to develop an addition to it. I do have a much better understanding of how someone could become addicted to prescription pain killers.  From my viewpoint, an escape, no matter how little, is very welcome.  After spending so much time being poked, prodded, tested, confined, and so on, it seems perfectly justified to want to take the edge off.  I can't order up a drink after all.  Instead, the initial rush when getting IV-dilaudid has become something I look forward to and it does help with the headaches.  

I started asking questions about my other pain relief options since a few of my current ones are no longer effective. The pain group here offered a Fentanyl pain patch, but that just seemed over kill.  I am surprised at how quick they were willing to go that way, I declined.  It's out of my comfort zone.  We'll focus on the oral meds for the time being. 

For the moment the headaches are minor and I am feeling ok otherwise.  I just need some improvement in appetite.  Let's hope 2013 treats the Grann clan a little better then 2012. 

AML: Christmas 2012

I haven't been writing much because I've lacked the focus to do so.  I am on lots of meds and my mind is a bit groggy most of the time.   It looks like I have a few more weeks in here until I recover. 

I am very happy to say that I got out for a few hours on Christmas Eve to have supper and open presents with the kids.  It was a good night.  They didn't let me out on Christmas however so it has been kind of a mess of a holiday. 

Treatment-wise things are progressing as they should.  My counts are bottomed out and there is no cancer in my blood.  I had some scans to determine why I was running fevers and not feeling well.  They felt there was some infection in my lungs at some point but the meds I am on should take care of it.   I am getting platelets an red blood when I need them. 

We decided not to do neupogen shots again.  The thinking is I don't want to jump start any leukemia before my immune system is back in shape to fight it. 

Really we're just in our routine of taking meds and waiting for things to get better.

AML: Back in the hospital again.

So I was released from the hospital last Wednesday with he hope that I was going to be home for Christmas.  Unfortunately after about a day the nausea set in.  Long story short, I was pretty miserable.  I dehydrated quickly and could barely get around.  Night time was especially bad as I'd spend most of it throwing up. 

We tried outpatient on Saturday to get me some fluids and nausea meds. I could tell right away that it didn't help so I had myself readmitted to the hospital.  I am already feeling much better. 

I have been running low grade fevers, so they put me on broad antibiotics.  They are running blood cultures to see if there is anything there.  I am getting platelets now. 

The good news is I'll have a pass for Christmas eve.  As long as I am doing ok, I'll be able to go home for a few hours on Christmas eve and maybe Christmas day to celebrate with the family. 
Merry Christmas everyone.

AML: Home again

Very short message this time.  Nothing witty or overly awesome to say.  I am headed home tonight.  Visitors still welcome. 

Relieved and happy to be headed home.  Crossing fingers for a "healthy" Christmas. 

AML: Update - Mostly quiet here

So I have been a little preoccupied with finishing some Christmas things which have kept me from writing.  Each year we use Shutterfly.com to create photobooks.  We have done this ever since Alivia was born.   I suppose that makes this the 8th installment. 

We give these books to family members as part of their Christmas presents.  They go over very well, but can be a lot of work to sort through all the pictures.  I managed to get them done and ordered last night.  So now what to do with my time?

It has been suggested that I might be getting out today.  Unfortunately, my doctor does rounds very late on Mondays.  So I sit and wait, somewhat impatiently. 

This round of chemo (Decogen) was pretty easy to handle.  No ill effects from the actual chemo.  My counts have stayed pretty consistent so far.   WBC hovers around .2 or .3 which is what it was when I came in.  Platelets are hovering about 16.  I've had to get red blood a few times. 

I had what started as a mild cold sore a few weeks ago (They have always been a problem since I was little).  Unfortunately, with no immune system or much healing ability this little guy made a big impression.  As it is now, it is healing, but it is painful.  I am generally getting a mix of Ativan, Oxy-IR and morphine in order to just fall asleep at night.  I am quite self conscious of it and am frustrated it will probably linger through Christmas and Christmas photos. 

They did modify my meds a bit.  I mentioned a bit back that they stopped all immune suppressants and steroids.  My meds now are mainly to boost my immune system.  Levequin (antibiotic),  Noxafil (antifungal) and Aciclovir (Antiviral).  In fact they have me on 20 of just the Aciclovir pills each day. 

I feel good though.  Things are squared away it seems.  I should be out today and hopefully things hold through the holiday.  We'll sort the rest out from there.  I just want to focus on Christmas and family now and making a few memories. 

Looking back: Visitors on the farm

With not much new on the AML front, I figured I's reminisce again. 

I've mentioned in prior posts that I grew up on a farm with Grandpa (Dick) and Grandma (Carol)Grann right next door.  Now since they were closest, they were always just Grandpa and Grandma.   You know...the default Grandparents. 

There were are a lot of advantages to having them so close.  My sister and I are way better off for it.  There really is so much to say about these two.  I'll have to do more posts later to do it justice.   But here are some quick facts about G&G. 

Grandpa was in the FBI (under J Edger Hoover) for a very brief time.  Grandma was born with one arm (It was always easy to miss the way she carried herself).  Grandpa had severe rheumatoid arthritis for as long I can recall.  They lived in the tiny farmhouse house I would eventually grow up in and raised 3 boys.  In 1981 they moved the large house on the farm (purchased from Mike Waldner) from Carpenter to where it is today.  Grandpa loved farming.  Grandma love family history.  Grandma like to cook, Grandpa loved to eat. Christmas always meant Christmas Eve on the farm at their house. 

Jessica and I also benefited from having them so close because of the extremely large extended family (nieces, nephews, brothers, sisters, cousins) that would stop in to visit often.  For me, exposure to such a close extended family is the foundation of why family is so important.  Again, our extended family is a topic I could go on and on about, someday I may. 

The rest of this post will focus on friends, 2 specific friends of G&G that are a very special to us to this day.  Backstory:  When Grandpa and Grandma were exploring treatment options for his arthritis, they met (through extended family) a couple in Kansas City with family ties to the Carpenter area; Gene and Lena A.

I recall Grandpa and Grandma heading to Kansas City fairly often to try different treatments and they always would stay with Gene and Lena.  Later on Gene and Lena would come to visit us on the farm.  Jessica and I were probably 5 and 8 respectively when they first started coming (just a guess).   Visits from Gene and Lena were very exciting times. 

There always seemed to be gifts and showered on tons of attention on the two of us kids.  The highlight would end up being the groceries they would bring out.  I have come to understand that Gene just loved how much Jessica and I enjoyed fruit. Goodness, they would bring plenty.  It's pretty easy to endear someone that spoils you rotten like they did Jessica and I. 

Gene and Lena moved back to South Dakota some time ago. we managed to all catch up a few years back when Grandpa was staying with Andy and I for a few days. That was at least 2 kids ago.    It was a good day.  Especially since I managed to get the check before Gene.  Unfortunately Gene passed in recent years. 

With our family reunion on the east side of SD this year, it was a highlight to see Lena pop into our family reunion this year.  It made me think of something else I picked up from Grandma and Grandpa:  This world is full of special people who become very special friends that are just as important as family.  In fact, they become family.  Gene and Lena were some of these special people. 

I have thought back fondly to these visits on many occasions but have done a poor job of staying in touch.  I have other family to thank for (Jan & Paul... Thanks!!!) for passing along my blog posts and helping me keep contact with Lena.