Adventures with Hodgkin's

I am growing hair on the back of my head. It's very exciting. I could feel something going on around the back of my head for a little while, but it was mostly itchy and I was afraid to look. I had a peek today, and it is hair, albeit short and and somewhat spindly. (The very first hair that grows in looks like crops grown after a nuclear explosion--weak and twisted and don't last long.) I may figure out how to pull my hair up to show this off--with stubble it looks intentional and that would help me blend in in our neighborhood.

Still no armpit hair, but you're not going to hear me complain about that for two reasons. First, the obvious. Second, if that's still missing, then all the other side effects still have a chance of going away, too. I'd like to make a deal with work--when I get armpit hair, I'll come back. Wonder if they'll go for it?

My newest side effect is continuing, and I have to say that when it happens the two or three thousandth time, it wavers between irritating and frustrating. Remember the old joke where the person goes to the doctor and says, "It hurts when I do this" and the doctor says, "Well, don't do that"? When you read more into the joke, such as why did the person go, anyone could have told them to stop doing it, you realize that it isn't really funny unless the punch line is, "Well, does it hurt when I do this, doc? KAPOW!". The reason you go to the doctor is because YOU CAN'T STOP DOING IT. Hence the frustration. Irritation mostly because you know it happens and there's nothing you can do about it and you are so beyond worrying that it's going to kill you. So you try to stop doing it, but can't except for a few times in mid-motion and then trying to stop makes it worse and then you express your frustration aloud (AAARRGH!) and realize people are now looking at you and you can't really explain it because you're trying not to worry anyone but eventually you realize that if you devote enough words to it people will imagine the worst--or the weirdest.

So here it is. When I bend my neck down, especially the chin-to-chest motion, I get nervy kinds of tingly feelings in my legs. From what I remember of the doctor's description, it's more common to feel shooting pains down the arms and it was one of the don't-call-us things.

Know what's nice about work? Other than getting to dress up in my work clothes and stride around sunny downtown San Francisco? Being sick seems so far removed, a totally remote possibility. Just being here begets my healthy verisimilitude.

Another nice thing about being at work is the ability to look up (and use improperly, I'm sure) words like verisimilitude because being back at work this week is all about getting my sea legs back and sitting in the office putting in face time. I mean, the only other thing I should be doing right now is work, which is not what I want to do with all these words to look up. Uh, I mean, with only an hour to go until lunch.

First day back at work, and I've changed my Blog template. Read into that what you will. Oh, don't bother. I'll tell you. I was wading through umpteen emails, trying to decide if something was worth deleting immediately, opening, opening and reading, opening and reading and comprehending, or opening and reading and comprehending and remembering. And I needed a break.

I had to come up with a new answer to the 'How are you?' question for my first day back at work. Unlike medical personnel, who prefer the 'Fine' answer, my colleagues wonder exactly why I was gone then if I'm 'Fine'. So I've started saying 'Hanging in there' which has the bonus of garnering sympathy and making me think of those wonderful 70's posters of the tiny cat hanging from a branch. And making me sound, just a teeny bit, like I'm going to ask them if they're 'working hard or hardly working'? (I eventually replaced that poster with the Poverty Sucks one, which horrified my mother. Then I horrified both parents by completely covering one wall and ceiling with other posters from Spencers.) And while I'm digressing, what is up with these cat people? Criminy jimjims, I don't know where to begin.

Anyway, back to my point. Saying 'Hanging in there' when they ask how I'm doing gives my coworkers a place to ask more questions, since there wasn't any kind of annoucement made and I didn't send an email annoucing it like I did the first time. So there was some speculation, although no one has asked about the baby (last time it was assumed I was on maternity leave) and everyone has been very nice. Not nice enough to offer to keep paying me while I cease working, but nice enough to be happy to have me back.

I've been outed. If you Google me, you find this page. Go ahead, try it. I'll wait. Google my name. No, I'm not going to tell you my name, because I've come back from the future (it's June 2004) and the list posting is gone, flushed from the Internet's memory, but you can still find me because of this post! Hoisted by my own petard!

I've tried so hard to keep last names off of this, and they find me anyway. It happened just recently--it used to be that you got a couple of work-related hits, then I made the mistake of including my last name on a posting to a Hodgkin's list and that archive showed up. (It doesn't show up now, though.) Damn technology.

It bugs me because Googling someone is very common in my business, and guess what now defines me. Kevin, on the other hand, has a very respectable Google hit list. Some very impressive and flattering work hits (one complete with a deep and meaningful quote) and a boys-will-be-boys hockey page. I'll have to start making some stuff up and pushing it out there. Think anyone will believe I won a Nobel Prize *and* the Pillsbury BakeOff?

So I'm experiencing some new side effects. Or late effects? Whatever it was that the doctor described to me on my last visit--those long-term problems, ranging from the scary (aaaaah!) to the not-so-scary (oh, really?). I must admit I've haven't been handling it well. Damnit, I'm supposed to start feeling BETTER! So when a new one crops up, it's hard to be rational. The first time it happens you say, hmm, that's weird. Second time you go right from weird to death--whatever it was is a harbinger of bad news, you're going to die immediately. This happens the third through fortieth or fiftieth time, too. Then you start to think about how you'll describe this to the doctor, and then get all scientific and determine if there's any cause and effect. And yes, you do figure out how to make it happen. (In my case, it's when I move my head a certain way.) This allows you to stop predicting your immediate demise and calculate how long it will take the medical community to verify what you've already figured out. Then, some little part of your brain says, hey, haven't we heard this somewhere before? Wasn't this something the radiation oncologist was trying to tell you when you were still fixated on the very first, and worst, thing he said? Was this one of the yes-it's-to-be-expected things (and the appropriate response would be to simply stop doing it) or was this one of the call-us-immediately things?

Side note--if radiation oncology would simply tell you when you were going to see the doctor, then you'd be able to bring someone less likely to freak out and more likely to remember and/or write this stuff down.

So I'm left to sweat it out like I always do. I don't want to call, because that would mean it's a problem. I'm all for letting it go away. But then I remember the little anecdote the resident told me when I asked why there was a tiny (1/2 inch by 1/2 inch) block on the treatment field for my back. It's for the spine, he says, telling me that years ago when they started radiating Hodgkin's patients they found that if they radiated the spine, the spine, like any other reasonable organ, didn't appreciate it so much and people ended up paralyzed. Now this was back when they thought X-rays couldn't be bad for you, and even used them to measure your feet for shoes. (More here.) And these folks certainly understood that without the regular treatment, they'd be dead. So they were, perhaps, a little better equipped to handle it. (Yeah, right.) So now I've just given myself something else to freak out about. Good thing we have the long weekend coming up so I can't do anything about it.

Another side note: why isn't there an emoticon for irony? No, ;-> isn't it. Perhaps />y ? Get it--iron-y. Looks like an iron to me.

I was supposed to start back to work this week, but I could not deal with it so I took advantage of a logistical detail and put it off until after Memorial Day. Maybe I'm projecting the uncertainty and worry I shoud be feeling about this relapse onto my job. Whenever I think about going back I get totally stressed out. I've only been released to go back to work because I shouldn't have any debilitating side effects left. Not because I've been given a clean bill of health. Now this is a distinction that anyone who hasn't been ill is unaware of, since I've had to explain it repeatedly to my company. (And more power to them for not knowing--I certainly wish I didn't.)

So I've been doing the whole "what do I want to do with my life?" soul-searching, and when you add in the "oh, god, am I going to die?" it certainly makes my job less than, shall we say, deserving of my attentions. In any event, I'm scheduled to go back and we'll see how it goes.

We just got back from a trip to Las Vegas. My parents took the whole family; as my mom said: 'Recently when Georgia ended her second set of therapy treatments we decided the whole family should go somewhere fun and visit with each other and start looking to the great future.'

Nice, huh?

Well, the trip was, shall we say, memorable. We stayed at Circus Circus, and I must commend their housekeeping staff for their patience and understanding in dealing with three cases of children's puking flu and three cases of buffet belly. Kevin, my brother John, and I escaped unscathed. Well, John did break his toe. And Kevin's computer took a direct hit. It was definitely interesting, and promises to just get better and better in the retelling.

I went to dinner with my mom's group this week, and two more moms are pregnant. Their kids aren't even two yet--there seem to be a lot of San Francisco moms who are having them close together for a number of reasons. At my table there was a mom who couldn't get pregnant and had adopted from Khazakstan (a harrowing story) and she said she'd like another but her husband wasn't up for it. I shared that if everything went right (this time), Conor would be six by the time he had a sibling.

So that started me thinking, especially with our massive reorganization underway after the renovations. We can get rid of all his baby things. Some we'll save, for sentimental or other reasons, but the bags and boxes of toys we shoved in the garage to make room can just be given away. It's kind of sad, but liberating at the same time.

I freaked out last week. There's no other way to put it. I was convinced of my own demise, and nothing could convince me otherwise. I walked around for days with a huge ball of dread sitting in my gut. I thought I'd cultivated the graceful martyr-like Susan Sarandon/Meryl Streep Hollywood star cancer death watch, the one where you know you're going to die but it's okay because everyone with cancer dies in the Hollywood version and you usually get an Oscar for it.

I'm better now, but still not sure what caused me to lose it. Was I due for that, a month after treatment ended? PMS? Or precognition? (Great, there I go again!)

People's reactions have been interesting. I'm sure most feel like I'm a little late feeling like that now--I should have done my freaking out much earlier. But I did try and keep that sense of denial going for as long as I could. Others have flat-out said I'm not going to die. But whether or not I die isn't the issue--it's *feeling* like I'm going to die.

Not to put too fine a point on it, but if I die, well, it's not so hard on me. After the dead part, that is. You can overlay your personal favorite religious ending here, but I'm in the ashes-to-ashes-dust-to-dust school--once I'm dead, that's it. But that's not it for Conor, or Kevin, or anyone else. And that's what I thought was the hardest part--imagining what they'd do without me. But the fear of dying is even worse because it's something I can't do anything about and, for the most part, it's pretty irrational. Granted, I've got better odds for dying than most, but even if it comes back again there are still treatment options. It's the fear that makes it so miserable. Fearing something you can't do anything about is horrible.

I am a weakling. I am willing to call it official. I have none of what I consider to be my legendary strength left. We're in the final stretch of our home improvement project, and it includes moving my closet. For those that haven't seen our house, our closet is a room furnished with four nine-foot IKEA wardrobes and two dressers. That are mine. Kevin's got a dresser in there, too. Anyway, I prefer to do this myself, primarily because Kevin doesn't need to actually see how many pairs of shoes I currently own. But I can't. I used to pride myself on my ability to figure out a way that I could move things solo. That, and owning mostly lightweight furniture, meant that after graduate school I could pack and unpack all of my possessions from a U-Haul by myself. (My parents will feel compelled to point out here that it was at that time that my music collection was on CD's, not the six milk crates of albums they regularly hauled from 3rd story apartment to 3rd story apartment while I was an undergrad.) Now I can barely get the appliance dolly up the stairs. Barry the Builder carried it for me and offered to move the wardrobes for me. I declined, but asked him to check on me in an hour or so to make sure I hadn't injured myself. I emptied the first wardrobe and got the dolly all set up and then realized that if I tipped it back far enough to get it through the doorway, I probably wouldn't be able to stop it from actually crushing me. So I waited for Kevin to come home and had him do it. (This was when he figured out that the two larger wardrobes were put together in that room and wouldn't fit out the doorway.)