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

AML: The Match Game...

Since we achieved remission with more chemo, and the tests were coming back with the results we want, the next biggest concern is finding a matching bone marrow donor.

For those just joining us, I don't have a related donor.  So I had to go to the national donor registry to get a match.  I must say I was a little overwhelmed at how many people asked to join the registery on my behalf.  Even the school nurse at my kids school, sent out a flier and info for a local bone marrow drive.  (join at www.marrow.org)

The good news is that there were 4 preliminary matches found in the national registry.  After further testing I know I have a 10/10 match, a 9/10 match and one more that is still pending. 

I have been asked about how a bone marrow match is determined.  Here is my short hand version.  

First, a bone marrow transplant is really a stem cell transplant. Stem cells are essentially these blank cells can the become more specialized cells, in my case bone marrow.  Bone marrow, along with creating the various elements of the blood is where much of your immune system comes from.  Essentially I need to get these stem cells from a donor to create a new immune system in my body.  When that happens, the new immune system will see my leukemia cells as foreign and will attack them.  The trick is we don't my new immune system to take out anything important along the way. 

Second, it has nothing to do with blood type.  What we are woking with is something called HLA typing.  (Human leukocyte antigen for those taking notes).  In simple form: HLAs are proteins.  This particular proteins are in pretty much every cell we have and tell the body which cells belong in our bodies and which do not.  So the goal is to get donor stems cells that have an HLA type as close to mine as possible. 

And here is why this is uber important.  We are attempting to prevent something called Graft-vs-host disease.  Since the donor cells are creating a new immune system, the danger is not that my body will reject the new cells, it's that this new immune system in my body will reject the rest me.  At this point you should begin to see all the nasty things that could happen should my new immune system decide my liver needs to go.  (yes I know I have been at odds with my liver over the years, but we've grown close recently)

By finding a donor that has an HLA type close to mine, the hope is that we'll be able to convince this new immune system that the rest of me is not so bad and that we can all get along.  So they look at these various HLA markers in a donor, compare to mine and a 10/10 match is good.  For every step down (ex: 9/10) you decrease the chance of success 10%.  in most cases they will not do a transplant below 8/10. 

Now,  In my case I have a 10/10 match.  Sweet right?  Come to find out, that this match is a female.  The preference is that the donor be of the same gender.  As a result, they are testing one more person. So I am waiting.. 

As I understand it, in roughly 6-8 weeks we'll be able to do this transplant.  Recovery... will take up to a year or more.  Honestly, I have not even been looking that far ahead.  My advice to my chemosabes, do what you need to plan, but don't get ahead of yourself.  It just creates that much more to worry about.  Focus on the next step... the rest has pretty much fallen in line.

On a very happy note Andy and I were so happy to be part of the baptism for little cousin Isabella and niece Ava these last few weeks. 

Well friends, that catches us up to where we are today.    Lots more to come...

AML: This is Spinal Tap...

(In my thickest british accent)
Well, I'm sure I'd feel much worse if I weren't under such heavy sedation...

Ok for those that have never seen the 1984 classic (This is Spinal Tap) you've probably got no idea what I'm refering to... I'll come back to that.

So, It's been a while.  Good news is 7th round of chemo, which was another "induction" round after my relapse has put me back into remission just like we needed.  So one more step closer to my transplant.   This time the Dr let me out of the hospital on Day 7 instead of keeping me in for the full 3-4 weeks.  I managed to go to work a couple of days then when my couts dropped, was comfortable at home until they recovered.  I had meds to keep infections away, and it worked. 

Only 7 days in the hospital.  though I often went back for labs and transfusions when needed. 

So after my counts recovered we did another bone marrow biopsy (my 5th) to confirm I was back in remission.  Then a PET scan.  It's a full body scan after they make me basically drink some radioactive sugar.  Cancer cells suck up this stuff and it helps them determine if we are damaging any organs or if there is any obvious cancer anywhere. Then I had a Lunbar Puncture (Spinal Tap) to see if there were any leukemia cells in my spinal fluid.  Leukemia likes to hide there and not all chemo drugs can make it through the blood/brain barrier...  Survey says...  all clear!  One more step closer. 

Now, I have had 7 rounds of chemo and 5 bone marrow biopsies. I have had countless procedures and been poked more times then I can count.  The only thing I will fight tooth and nail to never repeat is my spinal tap.  Perhaps you could get by the fact someone is digging around in your spine where all of a sudden your left ass cheek and leg go numb (to which the Doc responded, "Guess we're in the right spot").  Turns out that can be normal when the needle touches the edge of a nerve, but some warning would have been nice.

The problem is that in 20-30% of the cases a lumbar puncture can result in a headache.   I got the headaches.  On a pain scale of 1-10, they were 11 (another Spinal Tap movie reference... anyone?)  The pain was in front of my head, behind my eyes and temples, then later moved to the back of my head above the spine.  If I sat or stood up it was much worse.  Prolonged periods would cause me to sweat and become nauseous. I went back to the emergency room the next day to get a "blood patch".  Essentially they inject a little of your blood into the spinal column, which should clot and fix the leak. 

The ER doctor felt it was sufficient to just treat me with muscle relaxers.  Which provided temprary relief considering they had me lay down the whole time.  I left the emergnecy room with the recommendation that I just really needed to lay down and take it easy.  So I spent the rest of the week in significant pain.  The problem was all I could do was lay down, it was the only relief. Pain meds did not work.  So for the rest of my chemosabes out there...get the blood patch.  As it turns out, it took 6 days for things to begin to get better on their own.  Those 6 days were worse then any chemo treatment I had.   

With that all behind me and with the good test results, we are that much closer to my transplant. 

On to the Match Game...

 

AML: All is good on the home front...

So I don't do as good of a job keeping things up to date when not in the hospital.   Being out of the hospital and home in itself is a good thing, but the week has had some really great developments.

The main reason I requested to get out for a couple of days was to attend a work event.  We were hosting a number of our MLB and MiLB customers in Brookings.   This user group has, for many years, been a large part of the products I manage at Daktronics.  More significantly, some of these people are good friends and it was eating me up that I as not going to be there.  Surprisingly, I got little push back from the doctor.   He set me free Monday night.

Tuesday I made the first day of the event.  Managed to present my sessions that afternoon, and even out for supper that night.  Now in hind sight, I over did it.  It took me a few days to get any type of energy level back.  Physically, it was probably not the brightest thing, but for my mental health, I so needed it. 

So I had been planning to go back to the evnt on Wednesday, but my labs in the morning found my white count to be .2.  So, with no immune system, I was not allowed to go back.  Instead, back home and time for rest.   Since then I have been doing labs every other day.  My red count has actually been holding in the normal range.  My plateletts are falling, as expected, but not as fast as other times.   Today, however, I am at Sanford waiting for my test results, expecting that I will need plateletts today. 

So... the other good news. 

First, I need to mention that while my insurance has been great on this whole ordeal, they do not actually cover the search for a bone marrow doner.  So, when preliminary matches are found, and additional testing is need to see if they are truely a match, I have to pay for that.  I received word this week, they they have 4 preliminary matches and are ordering testing on those people.  So that is a huge step.  In addition to that, I have received a grant that covers the cost of that testing, $9000.  What was going to be a huge bill, gone.   More prayers being answered... Amazing right?

So, here is where we are at now.  My 7th round of chemo is done.  My counts have yet to recover, but it is a bit early for that.  I am comfortable at home, and if the fevers and infection stay away, I will stay there.  The next step is another bone marrow biopsy.  We need this one to confirm that I am back n remission.   If not in remission; more chemo.  If in remission, we try to time things right for the transplant.  If we can't get that done in 4 weeks, I'll probably have to repeat some consolidation chemo in order to maintain my remission. 

Transplant will occur in Rochester at the Mayo clinic.  It is great to have such a wonderful facility just a 4 hour drive away. 

Keep those prayers coming.  We've got a ways to go yet.  This ordeal would be so different if we did not have so many looking out for us. 

AML: Chemo Round 7.... Can I get a donor?

OK, so here is am back for round 7 of chemo @ Sanford hospital in Sioux Falls.

The point of this round of chemo is to get me back into remission so that I can have a transplant. The chemo regimine is a bit different this time. Since I relapsed, they are hitting me with some different drugs. Mitoxantrone, Etoposide, and Cyterbine. I'll get these over the next 5 days. 14 days from now I'll have a bone marrow biopsy, and we'll hope that I am in remission.

At the same time, they are searching for a matching bone marrow donor. The interesting thing is that the cost of seatching for a donor is not covered by my insurance, but the cost of the transplant and procedure is. We've been provided an estimate of $8,000-$10,000 for the cost of the search. There is a grant I can apply for to offset the cost of the search. I should know in a few weeks where we end up with that.

I've been asked by several people how to become a donor. It is real easy. Just go to theis website: http://marrow.org/Join/Join_Now/Join_Now.aspx and sign up. The test is just a swab of your cheek. You can ask to be taken off the list any time should you want to once a match is found for me. If you get matched with someone donating the stem cells are as simple as drawing blood. The sort story is that if you are matched with someone, you'll get a shot of Neuopogen which causes your bone marrow to create excess stem cells which get shed to your blood stream. They can take the blood, filter out the cells that are needed and that is basically it.

So, if interested, please consider joining the registry. About half the people that need a donor, can't find a match.

I had a bunch of tests today because the Mitoxantron can affect my heart. I had an EKG and Echo done to get a baseline for my heart. Everything looks good. I've got a PICC line again.

The chemo has started again, I feel OK. They will give me lots of drugs to manage the nausea. It's not very fun to be away from Andy and the kids again, but I am confortable and in a familiar place. So, that's as good as it can be for now.

AML: Mayo Clinic

Recap: AML relapsed... refereed to Mayo Clinic in Rochester Minnesota.

So Andy & I took off Monday night for Rochester. The drive from Sioux Fall is an easy 4 hour drive. It was uneventful, until we exited I-90 and headed into Rochester, we saw a SUV catch the soft sholder and roll over in the opposite ditch. We were in the north bound lane, the other vehicle was in the southbound.

We made a quick call to 911 and I sprinted (more of a lumber) across the 4 lane highway to see if there was something to be done. The SUV was on its side so I could not open any of the doors. I was able to open the hatchback and talk to the driver. She was fine (though she was not wearing a seatbelt) and assited her out the back. Except for a pretty nasty bruse on here elbow (The whole thing was purple) she seemed fine.

Lucky for us, it was still about 40 degrees outside. Police officers arrived in about 5 min and with all under control, Andy & I finished our trip to Rochester. Late to bed... and then up early for a 7:00 appointment.

The Mayo Clinic was a bit different then I expected. I kind of thought it would be a bit more of a sprawling campus. Instead it is a series of tall buildins in downtown Rochester. We met with our Nurse Practitioner. She talked about how the bone marrow transplant (BMT) works and what to expect. We both liked her a lot. Most of which we were already aware of. Then we met with the doctor. He told much of the same story and added some info. They were both very patient and took their time with us. I feel quite comfortable with them. I can't place my doctor's accent though. Hungarian maybe.

They set me up for blood work. They are rerunning my HLA typing which is the first step in locating a bone Marrow donor. (my sister is not a match). I am told there is about a 50% chance they will find a perfect donor in the registry, about an 80% chance that they will find a 9/10 donor. This means somone that is a 90% match. The doctor will not do the transplant if the match is any lower then that.

They also ran my blood counts which are still normal. No indication of anything in my blood work. I had a CT and a PET scan. both are intended to find out if I have anything else going on right now. We want no suprises as I get closer to having the bone marrow transplant.

So with all tests done... we came back a day early.

The next step is to get me into remission again. So next week I will go back into Sanford hospital. I will be able to get my chemo close to home. At the same time, they will start looking for a match. It could take several months to locate and line up the donor. So, once I am in remission and a donor is found, I'll have the transplant at Mayo. I'll write more about that at a later time.

For now, I feel fine even though I have the kids' headcold. Dr. appointment in Sioux Falls tomorrow and chemo next week. We'll enjoy the weekend and take it from there.

Some notes about Rochester (for future reference):
- We stayed at the TownPlace Suites. It was a great location and nice facility. Great rates. Nice pool for the kids if they come down somed time.
- Pi Wood-fired Pizza... great place for a slice
- Noodles & Company... great place for a cheap lunch. Bangkok Curry = yum
- 300 First... great place for a upscale meal. Prime rib was best I ever had ... stay away from the crab cakes.

AML: Relapse

Well, odds were that this was going to happen. My AML has relapsed. I was feeling so good and I hoped that the chemo was going to be enough. Turns out it was only halftime... Going to need to make some adjustments to the game plan.

So, next week I am off to Mayo Clinic in Rochester to get tests as an outpatient. I have to be there Tuesday morning and they have not told me when I get to leave for sure. They said they don't keep people there on weekends so I am planning on Tuesday-Friday.

I don't have a whole lot of info right now. But I think one of the main things they are going to look at is if they are going to have me get stem cells from a donor, or if they actually will use my own stem cells. Recovery is actually faster if they are my cells.

I guess I'll note that today is the first day I really don't feel myself. I don't feel bad, but over the last year I have become quite attuned to my body. I can tell I am a little run down, but more significatly, my lymph nodes are quite swolen. Hard as a rock even. But the doctors haven't really communciated any urgency here. The Mayo referral isn't happening until the January 10th. So basically 2 weeks after my bone marrow biopsy & last blood work.

For those of you that have started the praying, it seems that one of mine has already been answered.

Since learning that much of this will happen in Rochester, I had been stressing about the added costs of things not directly related to my health insurance. In fact, I was just talking to a coworker (Nancy) today about these expences and the cost of lodging for Andy(& kids?) when they visit. With my other treatments occuring in Sioux Falls, we did not have to worry about travel or lodging costs for myself or my family.

So... Today I get home and have a message from Vickie (my new case manager from my health insurace)... Now, I need to say again that I have had a lot of great care from doctors and nurses through this whole ordeal... but this ten minute conversation with my insurace case manager (of all people) has provided me with so much needed information, comfort and assurance about my upcoming treamtent that I feel a huge weight has been lifted. As icing on the cake, she tells me of this "hidden" $8000 benfit that will cover food, gas and lodging for myself and a caregiver during this process.

Seems like a small prayer to have answered... but it's the one I needed now. So my friends.. keep those prayers coming. I feel every one of them.