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.