Adventures with Hodgkin's

This week's chemo was over two days, and it went fine. My white cell count was 4100, which is probably why I felt so good on Monday and Tuesday. But my red cell count is still low, despite all the Procrit and iron I've been taking. So I'm tired a lot, and it's starting to wear me down. Mentally I'm preparing for this to all be done with, but I won't be fully recovered by then and I know that's going to be very frustrating. I've still got four weeks of radiation, too, and that's supposed to cause fatigue as well.

I'm also gearing up for my last Neupogen weekend, and I'm hoping that things won't get too bad until after Easter. There's an egg hunt at a park nearby (including a "Hunky Jesus" contest--only in San Francisco!) and we're having friends over. Last year Conor wasn't too into collecting eggs--if he had one in each hand, he was done. This year I think we'll do what Cindy suggested and have a few trial runs in the house beforehand, to give him some practice.

Last Wednesday my white cell count was only 1400 and more trouble with the PICC line, but we got it worked out and I got my chemo. And caught a cold. So I get the heaviest chemo, a cold, and the continuing impression that I've got to start being a better person if I'm going to avoid these nasty combinations in the future.

It's the Monday after heavy chemo, and I'm feeling good. Very surprising, because usually I'm counting the hours until I can have more narcotics. Maybe it's the Procrit and iron tablets--but whatever it is, I'm not complaining. My dad and I took Conor to get his hair cut today and yesterday I went out shopping by myself. This is a rather big deal because for the past few months I don’t think I’ve gone much of anywhere by myself, especially once I started chemo. I know I have a tendency to hibernate when I don’t feel well, and since I really can’t gauge my fatigue, I’ve been even more of a homebody. But I went downtown to Union Square and picked up some things and managed to get myself home in one piece. Kevin’s been after me to get out more since the beginning, but it wasn’t until Monique pointed it out that it hit home. I don’t think there’s anything wrong with holing up until I feel better (it took me weeks to get out after Conor was born), but if I’m just sitting around stewing in my misery, it’s not a good thing. So I’m trying to get out more. Even if I had my hat blow off as I was walking down the street.

Monique and Candus came to visit, and I think they had a reasonably good time. I know I appreciated their cooking, cleaing, and caring for me! But they probably think their efforts haven't been adequately detailed here. How else will the world know that they looked like the classic lesbian couple taking their child (Conor) to the park on Saturday morning? (I'm sure that French kiss wasn't necessary.) We watched back-to-back episodes of Sex In The City--which they rented (and paid my late fees!) However, I'm going to have to deduct points because they didn't appreciate the greatest burritos on the planet (although in El Faro's defense, they were out of carnitas). Candus taught me to tie a do-rag, which is just one of the super-cool things this queen of the dance floor has always been able to do. We made some plans for Monique’s wedding, and she brought a Jimmy LaFave CD so we could hear who's playing at the wedding. Monique is now the doyenne of the Texas music scene (she and Bill met at the Kerrville Folk Festival and she goes back nearly every year), but she can still name all the Bay City Rollers. However, the whole matron of honor issue may not be settled. I don’t think Monique believes that I am serious when I say I shouldn’t be her matron of honor. It should go to whoever does the most bridal work, and that isn’t going to be me! (Never mind that Liza Minelli has two maids of honor.)

Any wonder why Monique thinks I’m not serious? But I am. I’m looking forward to her wedding—I need an event like this! I’m looking forward to just about anything that happens after May. We had some friends over for dinner last night and someone asked me what was the one thing I was looking forward to after this was all over. Now that I’ve had a chance to think about it, I want a date with my husband. Drinks, dinner, dancing (yes, that’s pushing it--I may have to call the "Make A Wish foundation for that one) without a thought for any of the damn side effects. And I want to be strong enough to take Conor out, anywhere, and know that I can take care of him.

I remember one of my first visits to the Oncology Day Care Center at Stanford when this bald woman walked through the waiting room and pumped her fist saying, “Yes! Good news today!” I want to do that—I want to be told that yes, I’m cured and all this is over. But it doesn’t happen like that. It takes five years for a “cure” to be declared, and it just may be that the waiting is going to be the hardest part. My biggest fear is that it will come back, despite the odds, and without regular visits to a doctor who tells me that I’m going to be fine, what am I going to do?

I'm feeling really good today, so I must be due for more chemo. My white cell count was 2800, not bad. But I'm anemic, so the doctor's prescribing iron and more Procrit. We decided that since we wait so long in the doctor's office, usually until after noon, that we'd get something to eat before we went in. So, of course, we were seen in record time. I didn't even get a chance to start eating my bagel and the doctor was there. And then we had to talk of things that take away your appetite.

So after today I have three more chemotherapy treatments. I feel like I'm looking too far forward right now--three more treatments is three weeks, and I'm only going to get through them one day at a time because it's a whole new cycle and the effects are cumulative. Early on I couldn't imagine them being over, and now I can't wait. Why is it that when you have horrible things to think about you have the most time to think?

I know why so many women say losing their hair is the worst part of chemotherapy; it is the most visible side effect, a signal to the entire world that you are sick. And since most of us don't get diagnosed with cancer slowly and gently, we don't get a chance to absorb the fact before it becomes obvious to everyone else. I lost my hair before I was ready to admit I was sick. When I catch a glimpse of myself in a mirror or see the looks I get from other people, it is a consistently rude awakening. I'm still not even comfortable saying, "I have cancer"; instead I say, "I have Hodgkin's disease". In September 2000, when I read the list of potential diagnoses from the biopsy I had, there were a couple of cancers (bone) listed. At the time, I tried on the phrase, "I have cancer" and it was as unreal to me as saying, "I'm going to the moon" or "I think I'll vote Republican". Now that it's true, I have a hard time saying it. But it's not like it comes up that often. Who am I going to say it to? The people staring at my head, trying to figure out if I have hair? The customer service rep who says, "Well, you should have called us a month ago?"? (Yes, you bet I said it to her!) But the hair is hard. I look at pictures of me with hair and can't remember what that felt like. But it's growing back, slowly and straggly, despite the chemo so I have hope that I'll have something soon.

Last Wednesday's chemo went fine, my white cell count was 1200, with 1000 of those being neutrophils, the *really* good white cells. The doctor wanted me to take more Neupogen than before, but I argued that the last time we did this I ended up with a 48,000 white blood cell count, so how high did she want it to go this time? So we came to an agreement--I'd take the Neupogen Thursday and come in Friday for a count. If it was reasonable, no more Neupogen. So Friday we went in and it was 4300, with 4000 neutrophils. And that meant no more Neupogen--yeah! On the down side, we also had to deal with a clot in my PICC line, and had to have it replaced. Eeeegh, I'm still squeamish about the whole thing, although I am curious. Someday I'll have Kevin explain to me exactly how it worked.

I am officially done with the second cycle, and I can see the light at the end of the tunnel. One more cycle. Four more weeks. The next one will be the roughest, then, as Kevin says, it's all downhill from there.

My friends Candus and Monique came to visit this weekend, and it was wonderful to have them here. I wasn't feeling to great all week, but I did start to feel better over the weekend. They cooked the ultimate southern comfort food for me Saturday night--chicken-fried steak with gravy, Candus' Grandma's green beans, and mashed potatoes. Mmmmmm. They played with Conor, cleaned the kitchen, and entertained me. Who could ask for anything more?

My parents took Kevin and I out to dinner Saturday night for our anniversary. We had a wonderful time! We got all dressed up--I wore heels and a skirt and Kevin wore a sport coat--and did it up right. I think I ate everything they put in front of me!

I went to a baby shower Sunday, and it was really good to get out. I overdid it a bit and ended up coming home and crawling right into bed, but it was rejuvenating to be with a group of women talking about pregnancy and babies. (One of the shower games was pretty funny. There were melted candy bars in numbered diapers, and you had to try to identify the kind of candy bar. I won, which is probably a sign of my too-detailed knowledge of the ingredient lists of various candy bars.) Kevin and I had been planning on expanding our family this year, which is non-jinxing-speak for we were going to try and get pregnant again. (Can't alert the gods to the plans of us mere mortals!) That's actually one of the reasons why I scheduled my rib surgery. I'm kind of proud of myself that I don't feel jealous or envious of my friends who are pregnant or getting pregnant. I'm happy for them! I see my cancer as a delay. My doctor has told us that the Stanford V chemotherapy doesn't cause sterility; that those women who didn't have trouble conceiving before didn't have trouble (other than age-related) afterwards.

When I was about ten I had a very vivid nightmare where everything I touched turned to stone--my pillow, the bed, the sheets and blankets. And the feeling didn't stop after I woke up. It was so disturbing that I actually went into my brother's room, which was a huge deal since he's only 13 months older than me and we fought like cats and dogs. Now when I have bone pain from the Neupogen, I have the same dream, 25 years later. Strange.

The hair thing is interesting. I have not had to shave my legs in weeks--having hairless legs is something I have dreamed of since puberty, but not as a side effect of chemotherapy, of course. (It was supposed to be part of the taller-with-bigger-boobs deal.) I still have eyebrows, eyelashes, and hair on my arms. And nose hair, which I hear is almost as critical as eyelashes. I'm bald, but that's from the razor. There's some stubble growing in, albeit slowly. If you'd like to see what it looks like, check it out here.