Wednesday, September 19, 2007

Chapter Two: High Anxiety

Sorry but life once again took over and this is being written early Wednesday AM.

So, to deal with all the anxiety stuff: mostly over the impending CA- 125, for which blood was drawn at 9 AM Monday.

I called mid-day, the other labs were back but not the CA-125, which is usual, it takes longer I guess.

I called at 4 PM, my nurse Teri was not there, but the anxiety was getting higher, so I did the alternate nurse at the station call, reached Charlotte, but she said nothing was back in the computer.

About 5 PM or so, I connected with Teri, who reported that the lab was still not putting anything into the computer, so I resigned myself to having to let it be and learning at the clinic visit on Tuesday AM. Easier said than done, but I did it.

Woke on Tuesday with killer pain on the left side, which is unusual, it is usually on the right, near the liver. It really hurt, but once again, when I was asked "on a scale of 1-10 what is the level?" I hesitated, I am so ambivalent about grading it. I used the kid chart with the mildly wincing and unhappy face. And finally gave it a 7. Because I am a grown up and I am supposed to be able to do that. It *f-in* hurts, is what I wanted to say. But I remained polite.

In the clinic I finally found out what was causing the delay: the machine was broken! On the same ranking as "due to technical difficulties".

Dr. Valea and I had a very long heart to heart, and he went over the "what ifs" if this is not working. Which I think it is not, just knowing my body. Basically, the hard truth is I am obviously resisting all the drugs. The lesser used ones, still possible, have generally nastier side effects and might not do a thing either. So it becomes a quality of life issue.

I asked the hard question: how long?

His answer was sobering: not more than three years. And he said: "so what are you hoping to accomplish if you keep working until December?". He strongly suggested that I speed up the plan to separate from work and use the energy I have each day to parent and rest.

I agree. The hard part comes today, I will be talking with my boss, who has been on vacation for two weeks. This is not going to be fun, but the bottom line is that if I have only limited energy and very limited time (three years at the outside), then I want to spend that time with Sofie, and doing things that are closer to my heart. I need to move on.

I went up to chemo, signed in and got my beeper thingy (like at the Cheesecake Factory) and ran to the coagulation clinic, where I was seriously late for my 9:30 appointment, as it was nearly 10:15. Waited an hour and nothing beeped. Had the appointment, coagulation labs were better, so perhaps we are on the way to getting it balanced out. Coumadin, a pill, beats the shots any day of the week. Scurried down the hall back to chemo where I found out they had beeped me, but the beeper thingy did not work. I was read the riot act by the charge nurse to not attempt to go to another appointment when I am signed in for chemo (never mind that they have run two to three plus hours late sometimes, and I just sit in the waiting room). Then I waited a bit more, and then the thing beeped and I went back in. To find that I was assigned the one nurse I *hate*. I bit it and went like a lamb to slaughter with her. She is just off, she is the one who the one time I did have her, wanted me to sing while she started an IV. As if!!!!

She was her usually batty self, but I mostly ignored her. I got two units of blood, then the pre-meds, then the chemo (not the Avastin, Doctor V was concerned about the belly pain and held it this week). Then I gave myself my Procrit shot (Nurse T was put off that I wanted to do it myself). And got the hell outta dodge. The only good thing was I got to have a bed, so I napped a bit. Very helpful.

Oh, and the anxiety was confirmed at 4 PM, when I found out the number: 450. Up. Not good. We will do one more cycle (three treatments) and check again. Maybe even get another scan. But the process is clear from here on out. Time is not on my side and I am going to make sure I do whatever I can to use it well.

On that note, I have a special plan for tomorrow and the rest of this week. I will blog about that when I am back!!

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