Adventures with Hodgkin's

Now I know that when someone says, "I know how you feel", they might be right, even if they haven't had Hodgkin's IIAE then Hodgkin's IA. Even if they haven't had cancer. If someone knows what it's like to have that continual sense of impending doom. To filter everything through the lens of that really bad news. To hear conversations and think that they are so lucky to have such piddly problems. To know that bad things happen. And it's not fair. And that sucks. And to know that you can cope because that's all you can do--most of us are not designed for grand gestures that are, ultimately, empty.

Time is different in this reality. It's not this big happy pool of potential, it's a finite resource that you aren't guaranteed.

And we're still in it, those of us that have treatment options or the potential of death, not a death sentence. What about those that know the fate of their Schroedinger's cat? There's a world I don't want to visit.

And there are many who wouldn't trade this for anything, but I would give anything to be blissfully ignorant again. Yes, I do feel like I'm a better person, mentally anyway, but I am certainly wasn't that bad to begin with. Not bad enough to deserve an attitude adjustment like this!

I'm feeling this way because a friend told me of the degenerative disease her daughter has. She hasn't told many people, and I can understand why. She told me because of what I've been through. I am at once honored and horrified. Honored because she felt she could share this burden with me, but horrified because it is so awful. But I don't ask 'how do you do it' or say she's brave because I know better. There's no brave in just getting through the day. Unless brave is not showing how frightened and pissed off you are. I just know she needs to know that someone else knows, so the secret isn't constantly there. And I know she'll need support, now and in the future, and that is one thing I can do for her.

My friend Karen just called and told me that in this season's (sixth and final season) Sex In The City, one of the characters has cancer. Right now they're dealing with her side effects from chemo. Let me just state for the record that my hair did not fall out in such a dramatic fashion. We don't have HBO, so I'll either have to find someone who does, or wait until the DVD's come out (which is my standard MO).

If they kill her off, I swear I will never watch the show again. Uh oh, I better finish those season 5 DVD's soon, since this is Hollywood and they probably will kill her off and I won't have even seen season 5! I mean, this is the last season, after all, and a funereal funeral ending wouldn't be below them.

Well, at the risk of divulging too much information, my armpit hair is growing back. I was really hoping I'd get to keep my hair-free armpits, but it's not meant to be. Amy Tan called some of her side effects from Lyme disease 'souvenirs', and this is one souvenir I wanted to keep.

Not only is the bad news aesthetically, it brings out the paranoid rumblings. What if, my brain taunts me, the only reason your cancer didn't come back is because the radiation was still effecting (affecting?) your left armpit's lymph nodes, and now, as evidenced by the return of the hair, your cancer will return, too?

Shut up, that is totally ridiculous. I calm myself with the things that usually calm myself. Then, while showering, I feel what feels like a lump in my armpit. Now, I'm not usually checking myself because I haven't found it to be a successful pursuit. My nodes don't grow to gigantic proportions when they're cancerous--the doctors find out where they are from the PET scan and then they dig around and feel them during a physical exam. But I can't feel the 'lump' again. I can sort of feel a muscle-y kind of thing, but no lump.

Aha!, says my brain, if you put the armpit hair thing together with the almost-felt-lump, well, then you have cancer again!

Think positive thoughts? If I could just shut out the paranoid negative ones, I'd be fine.

Another reason to wait! From a Hodgkin's mailing list:

"One thing my rad onc did say is that a woman's eggs are affected by scattered radiation for six months after receiving radiation, and he says that goes for radiation anywhere in the body"

Great, we're going to have a baby Spiderman.

Here's another famous person who had Hodgkin's, Derf. What? You've never heard of him? Well, he certainly is famous--he only has one name! He described his experience with Hodgkin's in this way.

"Mostly it was just silent suffering."

So true. Except for those of us who can't stop talking about it.

A couple of situations happened recently where I worked hard to ensure I wouldn't be known as the cancer lady. At softball, a guy who hasn't played in a few months showed up and said I looked great, that the last time he saw me I was all washed out looking. I opened my mouth to justify my washed-out-ness, but shut it, and then opened it again to say, "Thanks, I feel good, too."

My mom's group had a speaker last night who talked about getting in shape after having a baby. Now, she was really aiming at those who've got younger kids, but it was interesting an amusing. She didn't have any grand revelations, really, just the same stuff we've all heard--eat better, exercise more, drink water. She emphasized that you can exercise anytime--do squats when picking up kids toys, pushups when playing on the floor with your baby, Kegels in line at the grocery store. Then she went on to say you cold do plie squats when brushing your teeth, hamstring stretches when you're in the shower, etc. I wanted to laugh--not at her but at me--because if I wasn't working exercise into my life before, and cancer wasn't scaring me into working out, she certainly wasn't going to motivate me.

I've decided that people lose weight for different reasons. I lose weight when I do not think about food, which only occurs when I'm completely depressed, or when I physically can't eat, which has happened during a couple of wisdom tooth flare-ups and cancer treatment. Oh, and there was that anorexia deal as a teen, too.

So I'm thinking of opening a weight-loss clinic for people like me. If stomach-stapling can be considered a reasonable treatment for weight loss, then how about intense indigestion? Or lack of saliva? Or excruciating tooth pain? I know I could make the last one happen with some rusty dental tools, but I'll need to work on the first two. I'm sure there are some unlicensed doctors who'd be willing to help out to get in on the ground floor of this endeavor.

Oh, and just to bring it back around to cancer, there was a series of messages on one of the Hodgkin's groups where people who gained weight during chemo sounded off. They have a point--no one expects fat cancer patients. Hollywood has taught us that you waste away, then die. Who has sympathy for the fat anymore?

I've been on a new year cleaning binge. I have been tossing those items that have been around so long that when you move them out of he way for the umpteenth time it doesn't even register what the item is, just that it is in the way. But I couldn't trash my chemo meds. I kept them in a gallon ziplock bag, and one whiff after I opened it was enough to make me remember how awful it was. So I sealed it up and stuffed it back into the cabinet.

Why can't I just throw them away? I don't know, it feels like I"m wasting them. (This is not unusual, I often leave things in the refrigerator until they go bad, instead of throwing them away when I know no one will eat it.) And reusing them isn't an option--someone on a list asked or offered some prescription drugs, but they were shut down pretty quickly since it is a felony and we all know Ashcroft has nothing better to do with his time than bust cancer patients helping each other out. There isn't any mojo to them, since getting cancer twice has pretty much convinced me there's not a whole lot I can do, ritual-wise, to stay healthy.

My sister-in-law asked how I was adjusting to being a stay at home mom. I was surprised by the question because there wasn't a real adjustment--I already went from working to being a cancer patient to working to not having a client and pretending to work to being a cancer patient to back to not having a client pretending to work.

But today is the big back-to-work/school day, and this was the first time I felt like I shoud be getting ready to go back to something else, not to my stay-at-home mom life.

We went to a few holiday parties this year, and during chitchat about families I sparred questions regarding expanding our family. Many people asking the question are just looking for reassurance on the choice they're making, so it's easy to turn the conversation around. At one party a group of women I was talking to started discussing women with cancer and small children. There was a woman in England, I believe, who had toddlers who died of cancer and the father was having a hard time explaining to the kids that the sick and angry woman was actually their kind and loving mother. The women speculated on what chemotherapy was like, and I remained silent. Side effects just aren't party conversation.