Adventures with Hodgkin's

Last week was our anniversary. Last year Kevin got a limo and we went down to Stanford in style. This year I drove myself down and then the flower delivery person woke me up from my nap. You could say the magic is gone--from cancer treatment, that is. It's definitely not as "exciting" the second time around.

Another naked person in the locker room. She was having trouble with the gown and the lockers. I helped her out, while trying not to figure out what she was there for.

Okay, so here's something weird. A side effect, even though I said I wouldn't go on and on about them. According to any and all familliar with radiation, you can't detect it--can't see it, smell it, taste it, etc. That's why they flash a light and sound a buzzer whenever they're zapping anything. But I swear I can smell it--have for a while. I laid there and wondered if it was a Pavlovian response to the stinky tape they use and the buzzer. But I can, I swear. And it's not normal smelling, either. It's like when I had the port in my arm and they'd flush it with saline--you'd get this whiff of salt air in your sinuses. I can smell this weird smell during radiation. And then I started smelling it after radiation, and then I figured out what it is. It's me. I smell. And not just because deodorant is on the list of skin irritants I'm not supposed to use. It's a twist on sunburned flesh--I'm smelling me getting radiated. It's not bad, per se, but since I know what the smell is from I don't like it.

And while I'm going on and on about side effects, here's another. I'm losing hair. With radiation, you only lose it where you're radiated, and I'm getting radiated through the back of my head--basically, follow the jawline up and around. If my hair were longer, I could do a cool topknot.

I read on a Hodgkin's mailing list that you can detect cancer via a pregnancy test. Seriously. Here's the post:

Fyi, neoplastic (cancer) cells are trophoblasts, which are the most primitive
cells in the cellular life cycle. Trophoblasts appear in abundance
within the body on only two occasions - cancer and pregnancy. In
pregnancy, trophoblasts are responsible for the development of the
placenta, a temporary organ that develops with extraordinary rapidity.
It is these trophoblasts that produce the HCG hormone that OTC pregnancy
tests are designed to detect. This hormone is a standard characteristic
of trophoblasts, ergo, if the trophoblasts of pregnancy cause an OTC
pregnancy test to return a positive result, so too will the trophoblasts
of cancer.

So I asked my radiation fellow if this was true. And he said yes, for certain kinds of cancer but not Hodgkin's. And I was ready to dismiss this poster as a crackpot! Well, I should talk--I'm the one taking bovine colostrum.

I saw the doctor today, and was going down the list of side effects. I was too tired to mention number four (fatigue) and couldn't remember the fifth one (memory loss). Generally it goes like this. Doctor: Are you having any side effects? Patient: Yes, xyz. Doctor: Ah, yes. (Makes note on chart.) Any others?

It's like they're just keeping score. If you ask them about the one you mentioned, you get a standard statistical disclaimer ("nearly 80% of patients report that"). And if you press them on it, they may cough up a remedy, but it usually isn't something you hadn't already thought of and picked up at the drug store. But then I look around at my fellow patients in the waiting rooms and realize I don't have it all that bad.

I had another setup appointment for my next round, and it was as uncomfortable, but not as lengthy, as the first. They actually laughed when I asked for a pillow. Sadists. Other than that, they were perfectly nice.

One of my technicians for my treatments has decided I can't wear earrings anymore for treatments. Usually I wear diamond studs, but one day last week I wore small hoops. She made me take those off, and now I need to take out the studs, too. She's also the one who tapes my chin to "remind" me to keep it up. I believe she belongs in setup.

Cindy and Allen came to visit from Texas, and they were great entertainment for me! They came bearing care packages of brisket, and other goodies to make my treatments easier. We were out and about, even had an adult dinner Friday night. Conor loved having visitors, too!

Radiation Therapy today was like a locker room. In the women's dressing room was a very good-looking blonde changing out in the open. In the waiting room a very fit middle-aged man was hanging out--and I mean hanging out--of his gown, on purpose. He had on boxers, socks, and his gown on backwards like a robe and was chatting with one of my technicians about his workout schedule. The very British technician came to fetch him and commented, "You've changed completely." Yes, he responded, obviously flattered. "No, I mean you took your pants off. We're doing your maxilla--go put your pants on." I'm embarassed to admit I laughed out loud.

The waiting room had a four year old issue of Allure magazine (in mint condition for you collectors!) and I couldn't tell it was out of date until I looked at the cover. Man, I'm out of style. Someone let me know when pleated trousers are in again.

My parents came to town last week, and while my mother commuted with me to Stanford, my father painted our house. In our defense, it was only one outside wall. To my father's credit, it's a three story wall and we had him use a scaffolding rig we got from the carnival. But the house looks great! I've decided that this go-round, Georgia's Make-A-Wish Foundation is requesting home improvement help. Forget about meals and flowers, I want a new stairway!

We went out Saturday night to celebrate their efforts, and we all had a good time. I had a really good time. I committed a couple of dialing while intoxicateds (I must have been inspired by the book by Laurie Notaro my dad gave me) and had the appropriate hangover the next day. Which was very bad for my sense of denial again, because it just reminded me of how crappy cancer treatment can make me feel. When I feel good, I can only vaguely remember feeling bad. But when I feel bad, even hungover, I can call up every single problem with eerie clarity. I was hoping that it would work like childbirth, where once it's over you can't remember much at all. No such luck. So I wandered around Sunday feeling terrible and terrified.

But I received a notice in the mail that I've officially qualified for disability again, and that's good news. Since I don't feel like crap (except after drinking too much) I feel like a fraud, but after I spend three or four hours getting to Stanford, getting treated, and getting home again it makes sense. My appointment times are different almost every day, and very rarely do I get in and out of there. I'm also very happy they validate parking!

Treatments started this week, beginning with a tedious and uncomfortable (think yoga but without the athleticism) setup session where I contorted my body to offer up the to-be-radiated bits to the machine. During the hours (yes, hours) laying there not moving you'd think I'd have plenty of time to think about the cosmos and my place in it, but I spent most of my time thinking about not moving. It's harder than you think, actually. And they never said it would take hours, they just kept coming in, discussing, making adjustments and then taking more X-rays. Lots of X-rays. And then they never did get the setup done for the lower portion, the inferior, I suppose because it was too complex. 'Inferior complex', get it? Yeah, well, it would be funnier if you were laying there for hours, too. They also mark up the treatment area (meaning me), so I think I know how white boards feel. I came out of there looking like I'd been the first one asleep at a slumber party. It looked like a map of Europe under my shirt.

Unfortunately, the extended time on the table started to shake my very strong sense of denial. I did a pretty good job of avoiding thinking about the obvious, but by the ninth time everyone ran out of the room to take the X-ray, I started to think about what was really going on. And that's not my plan--I had decided to treat these sessions as if I were going to a tanning bed. A good friend has some advice for me in the future--"Dr. Dave recommends you drink 2 Pina Coladas AND a Daiquiri, slather on plenty of Banana Boat sunscreen, and take a boom box playing Jimmy Buffett to your tanning sessions. " Barring that, I've got to get some of those little tanning bed goggles.