Friday, July 1, 2011

June 27, 2011: Confirmation ... Well, Sort of

We spent the weekend passing news around of my diagnosis and trying to let people know that God is taking care of us. We had to tell the charismatics (and my dad) that I don't want to be healed, at least not yet, and we had to tell everyone else that we don't believe God wants me to die.

The grace has been incredible. There's not only peace, there's joy, and even my daughters are getting settled with the idea of my having leukemia. Somehow, it hasn't been very difficult for my sons. I guess that's a man thing. Why worry if there's no way to know and nothing you can do?

We went to the cancer center, filled out lots of paperwork, and told the financial lady, who was buoyant, sweet, and a lot of fun, that we would write a check for today's tests. She said okay, and she sent me to the doctor.

I was brought into a room where I was weighed. I was so awed with the situation that I didn't notice the sign that was right in front of my face until my wife pointed it out. It was this one:

The nurse then began pulling vials off the cardboard shelf on the wall. She sifted through some, and then she settled on 5 big ones and 3 small ones.

"Are you filling all those with my blood?" I asked?

She looked up briefly, "Yes."

"You do know that I have a shortage of red blood cells, right?"

She laughed. Then she assured me that it was a lot less than I think.

(Apparently, this was probably 65 ml. of blood, which from what I can tell is about an eighth of a pint. Normally, a man has about 10 pints of blood, but I only have 60% of the red blood cells that I should have. So, okay, that's just 1/80 of my blood, but loosing that 1.25% seems like a lot to me to this day.)

Okay, let's try to speed this up.

The doctor made a face at the bumps on my back. I'm going to put a picture on here. In real life, they look worse because you can tell how not smooth they are.

Sorry, I know that probably looks awful. I thought you might want to see what I'm talking about.

After making a face at the bumps, he pretty much didn't bring them back up. He talked enough to make it clear that he wasn't sure what type leukemia I had except that it was acute. This, he explained, means that it is fast-moving, and that I need to get into a hospital for chemotherapy right away.

He took a bone marrow biopsy, which was really weird. It didn't hurt, and as I write this three days later, it's not sore. If you ever have to give bone marrow, don't worry about it.

The way he did it was to numb the area at the ridge of bone at the top of the pelvis. You can feel it going off in both directions at the top of the tailbone. He pulled the bone marrow, assuming he got any, from the left side. He had some device I couldn't see that he used to hammer his way into the bone. There was no drilling and no power tools involved. He commented several times that I'm young and healthy, so my bones are sturdy, and it was difficult to get through.

While he was at it, though, he pulled a small bone core as a sample.

Nonetheless, no pain. There was no liquid marrow in that part of the pelvis. My wife and I were able to determine from the doctor's tactful comments that this was a bad thing, but probably typical of acute leukemia.

We asked him a lot of questions because we had researched all weekend. Due to the fact that my lymphocytes are enlarged, I had determined that I probably had T-cell Large Granular Lymphocytic Leukemia, and my symptoms seemed to match it. Of course, you need a lot of molecular markers to establish that diagnosis, but I was confident that the doctor would find those.

The doctor wasn't impressed by our research. He explained that it's far more likely to be Adult Acute Lymphocytic Leukemia. He gave some reasons why, but he started getting over our heads.

I say "our" because my wife was allowed to be with me the whole time.

Anyway, at the end the nurse pulled seven more vials of blood. Four big ones, three little ones. Now we're at 120 ml, which is a quarter of a pint. I lost 2.5% of my blood, and it only has 60% of the red blood cells it's supposed to. Scary!

He did explain that the plan was to put me in a hospital as quickly as possible and treat with chemotherapy. First, though, we had to pick a good hospital and a good doctor, and we needed to determine how I was going to pay for it!

He made an appointment for an echocardiogram on Wednesday so they could ensure my heart was strong enough to handle chemo. Also, a cat scan would check for enlargement of the spleen, which I can feel and the doctor agreed was enlarged, and for enlargement of any lymph nodes in the body.

He also promised to call Wednesday to tell me what the blood and bone marrow tests had told them.

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