And now for the rest of the story!

 If you read yesterday's post you will know that I was concerned about my low platelet count of 23...and now for the rest of the story. 

After lunch I called the advice nurse, because oncology doesn't man their phones on weekends. The advice nurse took copious notes and then called the doctor on call, whom she described as an "ER" doctor. I was told I needed to go to Salem ER. Good thing we have the same car that knows its way to practically every medical joint in the area. 

To our delight, the waiting room was lightly populated when we arrived around 1:30pm, and within moments of sitting down, I was called in for "vital signs." It was about 30-40 minutes later that we were ushered to the Palace Suite (well, actually it was about 10X10 feet with a lot of dials and gauges, a couple of sharp things, and an iron maiden), where we were attended shortly by Dr. Karlen, who ordered (wait for it) a blood draw. 

(Just as an aside here: it never stops amusing me that, whenever part of my blood is MIA, the first thing that comes to the minds of medicos is, "Hmmm...now let me think this through. Part of his blood is missing. What shall we do? I know, lets take out some of his blood." What? Are they thinking they'll turn this blood loose and send it out to track down the missing cells?)

It was close to 5:30, when Dr. Karlen returned to report that my blood lab work showed my platelets to be at 36, and no transfusion would be needed. So, we returned home...with more questions than answers. 

Well today, we got some answers. We met with Dr. Cook, the transplant oncologist at OHSU today. There is still no suitable donor in the database, and I am at the age where other transplant options, which are available but much more dangerous, she would not recommend. And even if she wanted to try, she wouldn’t be able to get them by the tumor board. So I am apparently not going to be a stem cell transplant recipient.

But Dr. Cook says I am on the right medication regimen, which will just be our new routine. She said she has had patients on this regimen for many years, and with my “robust health” I should be able to get back to a more normal life. Jill suggested this means instead of curing the AML, we will be managing it as a chronic disease, kinda like diabetes. Dr. Cook agreed. What this means is that my immunity will be cyclical following the pattern of the chemo cycles. So, we’ll have to stay more to ourselves some of the time and be more free to engage with family and friends when ANC is up. 

Jill said something to her about not being able to fly because of my DVT, and Dr. Cook said immediately, “You can fly.” Then she excused herself and returned with another doctor who is a specialist in clotting. He said not only can we fly, but if I were his patient, he would reduce the amount of blood thinner I am taking. Again we will need to time vacations to match my immune cycles. So, we are rethinking life. My counts are down right now, but when they come back up…watch out!

This of course, will require a mindset reset. A door has closed. On the other hand a new door has opened. This door will take us into a world of continuing cancer treatments for the foreseeable future, but it is also a door behind which lies a bit of peace in knowing that there is a future; that parts of that future will be difficult (like whose life isn't at times?); that we have at last settled on a new normal. In a way, it is a comfort to know that our compass has at last come to rest and is pointing us toward an era of more certainty about what to expect. We can learn to manage that. Thank you, Lord.