Thursday, September 6, 2012

Day 82 - good news, VAD in, dinner had

Today had two pieces of excitement: my bone marrow results came back a day early and I got my VAD. Dr. Hill called me to tell me they were normal just as the nurse was calling me in to pre-anesthesia for my VAD. I did get to talk with him a little bit, but mostly just had to go so I could do my pre-op stuff, i.e., hurry up and wait.

Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.

I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.

Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.

Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."

Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.

The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.

I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.

Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.

For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.

Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.

Wanna see my port? I put it after the jump so you can avoid it if you want to.

The stuff on my neck will heal and go away. The scar on my chest will be little and barely visible and the ink, is permanent, but I can incorporate it into my new tattoos. (just kidding)

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