Adventures with Hodgkin's

Big news--I wore a bra today for the first time in about 7 months. I can't wear any of my usual bras, but I had this non-underwire one pushed back in the drawer and it worked out okay. The problem has been that the bras hit right where the rib was removed and even though the area is still mostly numb, it feels weird. It's been odd to be braless so long (thank god those camisoles with built in bras have been so popular). I wish I could wear my regular ones, the underwire T-shirt ones that already have boobs in them. (In the past they were called "padded", but that's so passe.) At one point when I was wearing one under a sweater I must have banged into something because I was walking around with a visible dent.

I've had a few people ask me how this whole experience has changed me, and I say that it's made me a nicer person. Anyone I've said that to has given me either surprised or skeptical looks. Which makes me want to say, "Goddamnit, I AM nicer!", which doesn't exactly prove my point. Or maybe I was just really good at keeping all those rude and evil thoughts to myself.

One of my favorite clients saw me today and said I must be beating the lesbians off with a stick given my new look.

Speaking of lesbians, there's a billboard on Valencia Street for St. Pauli Girl beer that says "Life's Better With A Girl". Valencia Street is known for, uh, its "women-owned stores and bars". Do you think they realize how hilarious that is, right there?

Okay, so I'm over the "oh, god, I'm going to die" feeling. There are too many other terrible things going on in the world to feel like I've been singled out for something. I've been monitoring a few Hodgkin's mailing lists, and I really don't have it to bad. (Then again, people who are doing well aren't posting to such lists, but I'm not going to go there.) My mom had some great advice, she got it from her friend Karen. I need to think of Hodgkin's as a chronic condition I need to monitor, like diabetes. So that's what I'll do.

I had a dream that my hair had grown in, I didn't look like a chemo patient anymore--I looked like Laurie Anderson. And I had to decide what I wanted my hair to look like. Does that mean anything? (I also had a dream about Fabio, and I *know* that doesn't mean anything!) After all, I do know what I want my hair to look like. I'll be happy with the way it looked around Thanksgiving of last year. I actually had to use a brush today just to "style" it . "Style" currently means putting goop on it and then brushing it so it doesn't stick straight out all over. It's about as long as a conservative man's, which is fine for San Francisco. Some days I like the fact that it looks radical and I know I'll miss that sometimes. I know I like the fact that I don't have to worry about what it looks like half the time.

I've been running into more and more folks at work who weren't aware of my cancer--some of them didn't even realize I'd been gone. (Sigh. And I thought I was such an integral person!) I'm not sure what to say. Some ask, others just make comments about my hair. Today, for example, on of the women in the cafeteria stopped me and said that I looked very different. What do you say to that? I mean, she's right. Do I tell her why? (She's been working there for a long time, and while I was pregnant she was my best buddy because she ran the smoothie machine. She's even asked to see pictures of Conor!) But do I tell her I look like this because of chemo? I didn't, I just smiled.

I've been moving more into the land of the "well", and not just in attitude. I put my bed jacket away. I sorted through all my hats and scarves. I cleaned out all the medical detritus--Rolaids & Tums, alcohol wipes, hospital parking passes--from my purse. But some things I keep in there, though. The oncology department at Stanford gives away these coin-sized angel charms, and I got one on my first visit there and I've kept it in my purse the whole time. After I got it I decided that when this was all over with I was going to take it back to Connecticut and leave it on my Nana's grave. There's any number of reasons, but it really just feels like the right thing to do.

Just when things were getting back to normal, it hit me that there really isn't a normal. I told my old softball team I'd be ready to play in the next league, but I keep realizing how not ready I am. (Yes, mom, I'm working out. And eating my vegetables.) Then I was looking at our finances and trying to think about when we should plan on retiring. It used to shock me to think about how old Conor would be. (If I retire at 55, Conor will be 22. A few years away from out of the house, probably.) Then it struck me--that's 20 years from now. A very long time, cancer-wise. So I poked around and found, once again, that a medical definition was very different from a lay definition. After I had a baby, I was *very* disappointed to hear that in the medical community "sleeping through the night" was characterized as 5 - 6 hours of sleep. Aren't these the same folks who recommend babies get 10 to 12 hours of sleep? Now I find out that the 80% "cure" rate for Hodgkin's means 80% survive 5 years. 5 years is NOT a cure to me.

I guess, even with all that I went through, that I never felt that my life was threatened. So now I'm torn. At times I feel ungrateful. After all, everyone says Hodgkin's is the cancer to get. But I didn't want ANY cancer! Survival rates for Hodgkin's are:: The 1-year relative survival rate after treatment is 93%; the 5-year and 10-year rates are 82% and 72% respectively. At 15 years, the overall survival rate is 63%. I wanted this to be just a blip, something I get over but those numbers make that very difficult. Granted, there is every reason to believe I won't be in that unfortunate third 15 years from now, but it is unsettling.

I made an appointment for my first checkup on August 26. I'll have to get Stanford's numbers from them then. Hopefully they'll be more comforting. But who knows. I just joined a mailing list for Hodgkin's patients, and I can't decide if it's helping or not. It's nice to hear from people going through the same thing, but every piece of bad news makes me worry that that could happen to me.

Well, the wedding was a resounding success. The bride was beautiful, the groom was dashing, and I felt like I had a hell of a lot more hair than pictures subsequently show. Here I am on the day after the wedding with Conor at Chuck E. Cheese. And I wonder why the bride's brother was so keen to tell me how great that spray on hair works. Good thing I didn't use it, or everyone wouldn't have been so keen to feel my hair. It's quite soft--I think Cindy says it feels like a baby chick.

Thank god I had no idea how I looked as I walked down the aisle. I forgot to be self-conscious! Probably a combination of the fear of falling in my new (and horribly uncomfortable) shoes and trying to hold in my stomach. We'll see how the pictures turn out. Hopefully I just look like some edgy San Franciscan.