If the current phase of my life were a prison, I would be my body’s bitch. In a normal world…not a world where you compare your life in general to prison politics…a body is a pretty reliable thing. You give it food, fluids, rest, and stretch it out with a little activity and exercise everyday and it will do nearly anything you want. In fact, I would even say that the mind and the will of the person are in charge most of the time. The person decides, “I want to go for a walk,” and the body gets to work doing what it’s told. Sometimes, the decisions are even potentially harmful to the body, but it goes along anyway like any really good friend would do. ”Hey, let’s do another round of Tequila shots!” The body knows it is not going to like this, but it leaves you in control of the arm to lift that shot and, and it begrudgingly concedes control of the mouth and throat to make sure your dumb self gets that little glass of Cuervo you think you want.
But this week, and I think last week too (it feels so long ago, I forget what last week was like), my body is having a grand old time being in charge of everyone. You see, I get blood drawn everyday, usually several vials at a time which are used for various tests. And these tests lead to sheets of paper with lots of little names and abbreviations, each one with a number next to it. Everything about this week…my schedule, my families schedule, doctors and nurses schedule, the demand on the local blood bank…everything has been slave to these reports. Every decision is heavily influenced by these reports. The reports have been given a general name, the counts. If my counts are good, my doctor can proceed with treatment, I can live a pretty normal life and everything remains somewhat predictable.
But, like every other measure of progress on this crazy journey, the counts have not been good this week and that has thrown everything into chaos. I am going to compliment myself on my patience and flexibility during this chaos, up until yesterday. For example, on Monday, when I was expecting to go to the lab nice and early, finish my blood test, get a shot of neupogen and go home, I did not get upset when instead they told me my counts were really low and I needed blood product transfusions. I made the best of it, even though “it” was the fact that I had to stay in their noisy miserable ward the entire day hooked up to an IV machine and having some strangers blood pumped into me. I wound up getting some type of blood product, either red blood or platelets, infused every day this week because the counts continued to be uncooperative. I also lost my appointment to start stem cell collection on Wednesday and get measured and setup for radiation treatments.
Finally, on Friday morning, my white blood cell count was 5.8! The range of normal for white blood cells is roughly 4.2 – 8.0. For all of the past ten days, mine has been between 0.6 and 1.0. We were all happy. Then more news came…my CB34 count, which is a measure of how many stem cells are in the bloodstream had also risen sharply and it was at an ideal point for collecting the stem cells. I had just come home from Emory, all 40 minutes driving and had been at the house for 5 minutes, when they called and said, “You have to come back right now, and you will probably stay overnight for collection.” Normally I would be really happy that my body had finally conceded and done something it was supposed to do, but this was the worst timing. You see, first thing Saturday morning, I am supposed to go pick up my sister and her husband at the airport because they are coming to visit me this weekend. I don’t get to see her much and I was really REALLY looking forward to a weekend with a little sliver of normalcy. The doctors had explained before that harvesting stem cells usually takes 2-3 days, and now they were talking about doing it as an inpatient procedure starting Friday night, when I have guests coming in on Saturday morning. I was crushed at the timing of all this.
Well, I will wrap this up so you can get back to your Saturday activities. When the nurses and doctor saw how disappointed I was, they instantly changed their story to, “Well…your counts are so good that you will probably finish your collection in one day, and then you can spend Sunday with your sister.” And the other thing grinding on me is that because I am being quickly ushered into collection, there is no time to get on the schedule to have the temporary central line placed. So they are going to do the collection with the arm needles that the collection nurse showed me two weeks ago and really tried to convince me that I did not want to use that method if possible. She went on and on about how big the needles are, and how uncomfortable the process can be with these needles. My personal nurse coordinator agreed completely and has been working with me to try and get the timing of when to install the line in my neck nailed down. Now that it is no longer an option, they are all telling me, “Oh the needles aren’t that bad.” The BS was getting deep in our meeting yesterday.
I am not going inpatient after all. The plan is to arrive at the hospital nice and early this morning (Saturday) and get the barbarically huge needles placed and start the collection. Hopefully they are right about the one day thing and I will be done by 3 or 4 PM today. I really don’t want to go back and get those needles again tomorrow.
If you are coming to the party at Champps tonight, I look forward to seeing you there. Hope all is well.
