16 May 2008

Happy Birthday, Daddy

I almost forgot. Happy birthday, Dad. I'm still angry. I'm still heartbroken. I'm still wounded. I'm still haunted. I still love you, anyway.

You're the only father I'll ever have. I wish everything could have been different, that you could have been different. Nonetheless, without you, there would have been no me. For better or worse.

Thank you for the gifts you gave me, even though they were harsh gifts. Thank you for the many lessons in compassion. You had a terrible life, that I'm sure of. I celebrate your will to survive, at whatever cost. I celebrate your talent and intelligence.

In the infinite, numinous universe, we have always been in agreement. You were the Buddha sent to teach me. I hope I learned those lessons well. I hope you're finally proud of me.

I miss your craziness. I mostly miss the hope that I could understand your pain, that I could heal you of your suffering.

Happy birthday, Daddy.


Clink. Clink clink. Clink. Clink clink clink. A teenager sat to my left, opening and closing windows at the speed of light on the public computer. Her bangle bracelets jangled together every time she moved her arm. A couple of men of Middle Eastern descent walked arm in arm from the elevator area to Nuclear Medicine, on the far side of Internal Medicine, where I sat, waiting. They passed in front of me ten times in the two hours I waited for my appointment. I never could figure out where they were going or why they had to keep leaving and coming back. I wasn't nervous about it; I was puzzled. Over the two hours, four people wandered up to the coffee machine, some of them stood there and looked at the empty carafe for a few minutes before they left. Others actually attempted to make coffee, going so far as to remove the coffee basket, only to find that the filters and coffee were nowhere to be found. Being a pro, I knew they were locked in drawers under the cabinet.

Two hours. My appointment with the Internal Medicine physician began to seem like an incredibly stupid idea. I'd already completed the 50 page (no, seriously) questionnaire within the first half hour. Why wouldn't I get up, leave the questionnaire and drive home? Why wouldn't I just continue to be exhausted? I was getting ready to check myself out when they called my name.

I'd handed over my completed questionnaire an hour earlier, but no one could locate it. I guess a search party was organized. They found it about ten minutes after I'd been sitting in the tiny exam room, still contemplating whether I could get up and leave. I knew the exam was going to be lengthy, because I had two scheduled, back to back. I had the Advanced Nurse Practitioner, then the Internal Medicine doctor. I was almost certain there would be blood work, which would mean I'd have to probably wait another 45 minutes in the lab area. Then there would be a four hour ride home.

Fatigue is hard to quantify. On the questionnaire they asked things like, "How much does your fatigue interfere with your ability to clean the house?" Please define the word "interfere" in this context. "Can you walk around the block?" Yes, but then I have to lie down for two hours. There was no place on the form to note the toll the walk would take. I can do virtually everything, but there is an energy cost and it's high. They attempt to quantify by assigning numbers to all of the answers and adding them up so that you fall into a range of fatigue levels.

Luckily, my new doctor didn't rely only on the answers to the questions. The nurse and I talked for about 45 minutes, then I spent another hour with Dr. Escalante. It was worth the wait. She listened to me, prompted me when she needed more information, then examined me. She ordered lab work.

Dr. Escalante reminded me that long-term fatigue is very common among breast cancer survivors and it's more likely for those of us who've had multi-modal treatment. That's a fancy way of saying that they've beaten me down with chemo, radiation and four surgeries. Of course I'm tired. There are some new research studies underway to try to determine why this is so, what internal mechanisms are factors in creating fatigue, but no one knows exactly why right now. Dr. Escalante acknowledged that I'm doing everything I can to improve my quality of life, so she suggested another alternative.

My new anti-fatigue drug is Ritalin. The other drug they use is something called ProVigil, which is FDA-approved for treatment of narcolepsy. I understand why that works, I think. I fall asleep sitting up, using the bathroom, anywhere I have a moment of inactivity. It's supposed to help with chemobrain, too. Some days I'm able to think clearly, but mostly not. I'm in a perpetual fog.

I got home around 11:00 Monday night. Wednesday night there was a terrible storm. We're still dealing with the aftereffects. It's been a long, long week. I can't feel any upsurge in energy since I started Ritalin. Next week, I'll tell you about Loathsome's take on the fatigue issue. You're going to love it.

14 May 2008


It was a standard-issue M.D. Anderson day: Arrive early and wait...and wait...and wait. I thought I had an appointment with Dr. K.'s nurse to have myself tattooed. Brenda and I had a difference of opinion, though. I wondered why she never appeared on my schedule. We had a couple of phone conversations about it, but she neglected to pencil me in. After about 30 minutes of waiting as she scurried around getting the necessary approvals, we got down to the ink.

It took a couple of hours to finish, including the prep time spent finding the right colors, drawing the template, etc. There were a couple of areas where I had some pain, but I'm virtually completely numb. In case you don't know, scabs will form that must not be disturbed or the color will come off with them. I can't wear a bra for 5 days and I have to apply Aquaphor twice a day. I hated to see the jar of Aquaphor. They gave me that during chemo to stave off the sores on my hands, but it did absolutely no good. My brain automatically rejects everything that was related to chemo.

So here I am at work, bra-less. Being a member of the groovy generation, I used to go without a bra rather frequently, before propriety and gravity asserted themselves. I don't think, even in my youth, that I ever showed up at a job lacking adequate foundation garments. Today I wore a large NBA tee shirt from the year the Phoenix Suns were in the Finals, but the Aquaphor almost immediately created a dark round spot the exact size of the tattoo (or aureole). I'm not sure how I'm going to get through the rest of the week. I simply don't have that many XL tee shirts, even of the NBA variety (of which I have quite a few).

The other issue is one of bounce. The girls are pretty perky and, no matter how slowly and carefully I walk, they tend to move around a bit. The thought that Loathsome or Mr. Moneybags glimpsing the girls actually moving makes me a little queasy.

There's ever so much more to share; the day actually went downhill from there. However, in my absence, Crazy Employee has managed to make part of one of the databases malfunction. I can't figure out how she did it. She's gifted, I suppose.

Due to database repair and exhaustion, Part Deux tomorrow.