Archive for August 5th, 2009

Stage 3

I came home from UNM in despair. I was still drowsy and feeling the effects of the sedation, but I was alert enough to be despondent. The entire experience at UNM Hospital was upsetting and unpleasant.

So far I’ve been pretty happy with my health care experience in Santa Fe. I’ve gotten personal attention by people who seemed genuinely concerned about me. I’ve been especially impressed with the level of communication among the various professionals involved. And their communication with me has been mostly clear and compassionate (even if I didn’t like what I was hearing).

Yesterday’s experience in Albuquerque was a sobering contrast. UNM has a large hospital that’s hard to navigate. Mary Anne and I wandered around and eventually found where I was supposed to go. I immediately felt like “just another body” in the medical machine. They took us to a room with dozens of beds, mostly full of folks awaiting or recovering from some procedure. They pulled a curtain around my bed so I could change into a hospital gown. I was told to open the curtain again to signal when I was done. The nurse who prepped me for the procedure was polite but distracted. She was called away at least three times while attempting to get and give me info. I expressed my concern about the kind of sedation they would use since I’ve had varying results recently. She said I could talk to Dr. Parasher about that when he came. Soon I was getting an IV and being covered with wires and tubes. There’s also a clamp they put on your index finger to monitor pulse (and something else?). There’s the blood pressure cuff that stays on you throughout, automatically inflating every few minutes to take your blood pressure whether or not anyone is around to read the results. And they put oxygen tubes in my nose.

There were other little indignities that are hardly worth mentioning, but two monumental ones have left me angry and confused. The first is: I never once laid eyes on Dr. Parasher much less got the chance to speak to him.  A different doctor came to discuss the procedure with me beforehand. Again, when I asked about the sedation, she said I could talk to Dr. Parasher when we got to the procedure room. Meanwhile, I was asked to sign her consent form (about the possible risk of death from the procedure) even though I didn’t have a free hand to use. I never did see Dr. Parasher – before, during or after the ultrasound. Yet, ultimately, he would be the one to throw me the big curve ball (more on that in a moment).

The other thing that really messed with my mind was this:  they wheeled me to an incredibly small, purple procedure room and left me there alone.  Alone!  I was already a little agitated and nervous, covered in tubes and wires, barely able to move, and now I was lying by myself in a f—ing purple room the size of a cell. On a table next to me was a long, thick, black tube marked off with centimeters at various intervals. Next to that, a tube of lubricant. I was starting to panic, but tried instead to imagine four people squeezed around the gurney performing an ultrasound. It would have to look something like clowns jumbled into a Volkswagen. There were monitors everywhere, including one that reported all my vital signs. I kept watching the numbers go up as I became more distressed. Soon I was crying and trembling.

Then Jesus walked in. He introduced himself and said he would be assisting Dr. Parasher with the instruments. (Well, I guess having somebody named Jesus assisting is about the best you can do.)  Then he asked me to turn onto my left side with my knees pulled up to my chest. I heard him squirt a big blob of lubricant out. A nurse arrived and said she would be giving me the sedation. I asked about Dr. Parasher again and was told I could talk to him afterwards. Before I could collect myself, Jesus informed the nurse that I’d already given consent so they could begin the sedation.

The next thing I knew, I was waking up back in the bigger room with all the beds full of people. I was very groggy and having trouble keeping my eyes open when the doctor whose name I didn’t know came in. She told me rather coolly that it was Stage 3 and Dr. Parasher wanted to refer me to a surgeon named Dr. Rajput. I asked if they would get my friend Mary Anne in there so she could hear all this. In my haze, I tried to explain that I was supposed to start with chemo and radiation first before surgery, in the hope that I might not even need surgery. She said, well, we’re referring you to Dr. Rajput. You have an appointment with him on the 26th. I was grateful when Mary Anne arrived and heard the whole thing again since I was confused and upset. I’m supposed to start my chemo and radiation on the 19th, I told the doctor…Are you saying we aren’t doing that now?

I wanted to leave. They removed all the tubes and wires and said I could go. Although still really wobbly, I got dressed and somehow walked the many miles out of the hospital complex to the car. Mary Anne asked if I wanted something to eat. I thought a milkshake would taste good. She drove us to the Flying Star Cafe and, like a zombie, I went inside with her so I could order what I wanted. While we waited for the milkshakes to be made, I went to the bathroom and nearly passed out. Eventually, I came out, found Mary Anne, and told her I needed to get to the car. But suddenly I was sitting down at a table that needed busing, holding my head (which was ringing loudly) in my hands.

I slept most of the way home. Once in the door, I collapsed on the couch. Before Mary Anne left, she and Tim went outside to talk. I began crying again.

I feel like a ping pong ball. I’m angry and confused. I’m especially mad that a man whom I’ve never met, and who doesn’t know me, has decided we need to change my entire treatment plan.  I’m also miffed that over the past week his office called to change my appointment twice, which affected not only me but two friends who both needed to alter their plans so I could be driven back and forth, all so that Dr. Parasher could “make his plane on time.” I’ve been pretty damned accommodating. It seems like the very least he could have done was actually speak to me in person.

I also feel burdened by the task of having to referee the various doctors now. I suppose today I will call Dr. Fekrazad’s office and find out when I can talk to him about all this. I’m so distressed. I wish I hadn’t spent all the hours and appointments getting prepared for the idea of having chemo and radiation only to be dealt this blow. I know I will calm down eventually and find a way to navigate this, but at this moment I’m very much wanting to give up.

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