You Pretend Too,Don't You?

The plans have been set. The reservations are complete. We will have a private room. We have requested room service from their exclusive menu, choosing the most exquisite of all they offer. This you see, is our anniversary and to be celebrated in style. All of this has been reserved for us at Chez MD Anderson (if you put a French twist to Anderson it has some pizazz). Of course we are pretending. I do, though, have an all day event at MD Anderson, which includes the customary blood work, meeting with the nurse and then with the Dr. in his customary white tuxs and also a 6 hr infusion of their finest antibiotic, Pentamidine, all of it on our anniversary this week. Whoopee! Pretending can be good though, can't it?

Will the Real ..........Step Forward

It was a Christmas Party. Gathered there, together, were family and friends. Around the large room were groups sitting and standing and visiting. All of the laughter, the chatter, and reconnecting had all the chords needed for a Christmas Carol. I felt a happiness inside that took me by surprise. It was so deep and warm. Then I woke up! Lynne had to get up so I called out to her in the dark, " Merry Christmas!" She said, "What?". I repeated, "Merry Christmas!". There was a pause then slowly she asked, "Are you okay?". "I'm okay", I said.

For a bit, I lay there, enjoying the afterglow of the warm tingling that I was experiencing. And I thought to myself I wonder what would happen if the "day time me" of the last blog were to meet the "me of the night"? So I was curious who would wake up "the day time me", or " this Christmas fellow"?

Waiting and Waiting and Waiting

I'm sitting in the Sundial Area  on the 2nd floor with windows to the main entrance at MDA. It's a common area for people who are waiting, waiting for tests, appointments, results of tests and appointments or whatever. It is a good place to pass time. I wanted to say, it's a good place to kill time while the Cancer kills us. Next to me sits another elderly gentleman. At first he was reading and now he has been sitting motionless just staring at the people down below at the front lobby and the coming and going of the courtesy buses from the different hotels, loading and unloading, people coming and going. All day long people coming and going and waiting. And I am there in the thick of it.

It has been a tough couple of weeks. A good way to sum it up would be to say they ran a set of tests and they all came back negative. Energy Level - Neg.,  Ambition - Neg.,  Appetite - Neg.,  Attitude  -  Neg.,  Patience - Neg. The fact that the sun did not shine much this last week was actually a bright spot since it made it easy to roll over and go back to sleep. It was about the only thing that was enjoyable. I think I could actually sleep 12 to 15 hours out of that Sundial's rotation.

So this is the morass in which I find myself. I feel like I'm waste deep in a swamp with no firm bottom and exhausted from the constant struggle to extract myself from the mire or at best stay afloat. Extracting myself from the mire is about as good a metaphor as I can think of. On the way out of the parking ramp I'm on the 10th floor and I'm behind somebody going so slow, I think a wheel chair could have passed us. Hey, I finally tested positive for something ...anger. For all you analytical types out there can you see where this is headed? I'm guessing there could be a bit of depression going on.

This was started on Wed. Today is Sat. I have since found out that the gentleman I referred to in my blog of June 9, titled, "It Goes With the Territory" has died. He had an infection and then a heart attack. That makes 3 people that I know of that have died following a SCT. I am reminded again that the silver cord in the old hymn is thin.

<< Psalm 69 >> New International Version 1984 1Save me, O God, for the waters have come up to my neck. 2I sink in the miry depths, where there is no foothold. I have come into the deep waters; the floods engulf me.

13But I pray to you, O Lord, in the time of your favor; in your great love, O God, answer me with your sure salvation. 14Rescue me from the mire, do not let me sink;

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What's New?

Often when I sit down to write one of these entries I have something definite to write about. That was relatively easy when there was a lot going on and the treatment had a day to day element involved. Now the course of treatment has taken a new course. It is one of monitoring and maintaining and adjusting. That's what last week involved. The blood work showed my neutrophils were very low as was my white blood cell count. So they gave me a neupogen shot to increase the production of neutrophils which are necessary for infection fighting. Also my magnesium count was low. This has always been an issue since the SCT because of the tacrolimus I'm taking. I have been able to maintain a good level with magnesium oxide pills but that creates a diarrehea issue which in turn throws off the other medications, including the magnesium and the tacrolimus. So they gave me an IV of magnesium (easier to tolerate) and adjusted my tacrolimus dose as well. Monday I go in again for another blood test and probably adjust again. Each time medicines in my system get out of dosage there are side effects. Tacrolimus causes me to have shakes and when the counts get high it gets pretty bad. My signature last week could have been mistaken for a doctor's. Low magnesium leads to low electrolytes and other problems.  That's the way things are going now and it involves a lot more monitoring on my part since the time between Dr.'s visits is getting longer. It has been 4 months now since the SCT and the next big mile stone will  be 6 months. There be days my friends it's like watching grass grow during the year of the drought.