Sunday, January 30, 2005

On Being 'Sick'

When I was first diagnosed, I couldn't think of myself as 'sick.' Sick means, well, sick. You know, like the flu, or a cold. I felt fine. It seemed...inappropriate to describe myself as sick when there were real sick people wandering around who had symptoms and felt under the weather. I didn't have a term for what I was. Presick, maybe. Secretly sick. Fine but doomed without treatment. All right, the last is true but a little over the top. I could say I was scared. But it was like being a cancer survivor. I couldn't be a survivor because I hadn't survived anything. And I wasn't sick because I didn't feel...sick. The first chemo treatment didn't do it either because that was induced. Maybe it was all just denial.

Today, I made some comment about 'being sick' and I realized I am quite capable of thinking of myself that way now. There's no real border between when I was diagnosed and when I decided that it qualified as being ill. But I have made all the changes that really happen. Hypervigilance (does that really hurt or am I just expecting it to hurt.) Self-absorption. A narrowing of the world. After Susan Sontag died there was a bit about her in The New Yorker describing how she was so alive, so involved in the world. I'm planning. I've got travel plans for the summer and stuff to write and all sorts of stuff going on, but I have to tell you. Sometimes, I'm just sick.

Last night, for example. I've had bouts of insomnia for years and last night I woke up at 3:00 in the morning and ended up watching The Secret Childhood of Michael Jackson. Bad television is the childhood experience of being sick. I lay there, waiting for my body to settle down. I'm in chemically induced menopause which, since I am 45 will not reverse when chemo is over, (although it does in someone younger.) Sometimes, my experience of the temperature in a room will swing wildly, but I have found out that a hairless head and a hat in a warm bed and cool house are pretty amazing regulators. What is it they were always telling us when we were kids? You lose 25% of your body heat through your head? Well you do when it's bald. I wasn't unhappy, particularly, although not very thrilled with the television show, but it was that or infomercials. I took off my hat, put on my hat, took off my hat cooling and warming and feeling a little queasy when I was too warm. The miniature dachshund grumbled because I was disturbing her. Allegations were slung at the Jackson family. It was quiet and still and odd the way it is when you are living in direct opposition to everyone else's circadian rhythms. It wasn't actually an experience I would describe as ill but I had the sense of myself as a bit of an invalid. I was intensely focused on my own physical sensations, trying to game them a little to reduce a bit of discomfort, the way when I have a headache I might work to relax the muscles of my head and face, or the way, when I have a sore throat, I try to breath so it doesn't acerbate it. I was rather engrossed in it, actually, because my symptoms--over-heated, a little nauseated, tired--had become part of the furniture of the room.

It's not like pain. Pain is inescapable. Pain fills the room and spills out. This was forgettable for awhile, and then insistently came back to my attention. Finally, Michael Jackson was explained by the trauma of his childhood, the dachshund was sound asleep, and I could go to sleep myself. I am a little out of sorts again today, not in any serious way, just fatigued and nothing quite tastes right and things don't settle, but perfectly happy to read and watch TV. A little vigilant about taking anti-inflammatories so things don't get out of hand. The world is small.

I am sick.

Out and About

I tend to have the greatest fatigue (at least so far) in the couple of days right after chemo. (Other affects happen later.) But the day was sunny and Bob and I felt compelled to do something. So we went out and wandered around the mall, watching middle America shop. It was a surprisingly nice thing to do. Apparently, if you have a small child--stroller sized small child--one of the cheapest entertainments possible is to go to the mall. And there were, of course, disaffected teenagers attempting to purchase happiness.

But fatigue settled in like a fog after a couple of hours, and now I'm feeling a bit washed out. The nerve pain is already back. Mild, thank goodness. Since my blood counts are good, I can take anti-inflammatories, which I am hoping are the key to keeping it from getting as bad as the last time. The doctor says it is an unnusual but not unheard of side effect of one of the drugs, but wants to keep pushing through chemo. It never even occurred to me that it might be a reason to stop.

He did check to make sure that I don't have any real nerve damage. This consisted of testing sensation in my foot with a twist of metal wire that looks a little as if it started life as a large paper clip. One end of the wire is very dull, one has just a bit of a point to it, and he would ask, 'Dull or sharp?' I passed with flying colors. I am trying to imagine finding this device in a medical catalogue. What would it be called? 'Dull/Sharp?'

Friday, January 28, 2005

Thinking About Blogs

I heard about this blog from Charlie Oberndorf, who heard about it and checked it out--partly to see if his school's internet nanny would keep him from doing so. It did not. It's the blog of a London call girl. Granted, everybody in the world except me and Charlie have probably already heard about this. I read about it on Bruce Sterling's website.

But there are two issues with it. One, she got a book contract and stopped posting in her blog, so if you want the juicy stuff, you have to go back and read in the archives. Two, it may not be real.

Seems that The Guardian, which gave the blog an award for best blog of 2003, considers the book dumb. And is beginning to wonder if the call girl even exists. No one has come forward to admit to knowing her and there's no collaborative evidence for her existence, much less her career. Some guy pretending to be a girl writing about sex? On the internet? never happen.

But it did make me think that my blog is seriously lacking in titilation and, well, the kind of material that goes over on the internet. (Tongue firmly in cheek.) Bob told me, after reading a couple of entries about me and the wig, that I ought to do something called "The Wig and I". I turned to him and sang (we were in the car, he couldn't escape.)

Some enchanted evening
you will meet a stranger
you will meet a stranger
across a crowded room.
But then when she turns
it's only your wife
the wig has disguised her
and hides her from view....

But I think my limited inspiration ran out. I have a good friend (hey Linda) who is really good at this kind of thing. And her husband Jim is a fabulous musician. If either of you feel inspired, you're welcome to this material.

I guess I could hope that my cancer experiences got more interesting, but you will forgive me if I don't. So I am thinking of pretending to be a middle-aged man writing a blog about a middle-aged woman who has cancer...but obviously, there are flaws with that plan.

One thing it seems to me that blogs provide--and a major difference between blogs and books, is the pleasure of a serial. We don't do serials very much anymore in fiction. We used to. Charles Dickens was published in serial form. Television episodes are serials. Blogs are, mostly, real life serials. And when a blog is about something like mine, there's a sense of beginning, middle and end. But the middle--ahh, that's where everything happens, right?

And in a blog, you can't check out the end the way I often do in a novel. You've got to let it unfold. See what happens.

And all you people who don't have cancer but have blogs? Well, you'll have to come up with your own strategy.

Reading for Chemo

I was reading the autobiography of Jenna Jameson (How to Make Love Like a Porn Star) which came to me, as it should, by a circuitous route. But while the first part of the book was fascinating, it had gotten dull.

I went to the library and couldn't find anything and ended up leaving with Austerlitz by W.G. Sebald. I like Sebald very much, and I'm usually not at all bothered by pages long paragraphs and lack of action, but the morning before my chemo yesterday, after I finished an assignment for the freelance job I'm doing, I tried reading it. I was apprehensive about chemo and found that I couldn't really concentrate. Since this gets worse, not better, when I'm on the IV, suspected that the book would not do. So I decided I would take the Jameson and the Sebald and probably just try to nap during the chemo. I got my coat and scarf and hat and told the dogs I'd be back.

When the doorbell rang with a package from Kelly Link. In it was a couple of YA novels including Charmed Life by Diana Wynne Jones. SAVED! Like Harry Potter it concerns children who can do magic. And like Harry Potter it is charming without being...well, taxing. It took me the length of my chemo appointment to read it. So Kelly, if you check in, thanks thanks thanks. And for the rest of you, may I recommend YA books for your next airplane ride, dental appointment, or chemo session.

(For those of you who don't know who Jenna Jameson is, she is, in fact, a porn star. And I have a bit of a funny story about her book. Last semester, one of my students told about working at Crate and Barrel, a store that sells dinnerware, furniture, rugs, all of it moderately upscale. We have a new shopping thing in Cleveland called Legacy Village, which is something of a shopping Disney Land. It's not a mall, because it's not enclosed. It's a fake village of high end stores that sell mostly housewares--places like Restoration Hardware and a store that sells Viking Ranges. There is also a Joseph Beth bookstore there, a huge place like a Barnes and Noble, and they often have people come in to read and sign books. My student said one weekend afternoon, Crate and Barrel was just absolutely full of guys. Crate and Barrel is a great place to buy a shower gift, but not usually a place where you see a lot of guys. And the guys were spending money. Buying stuff for wives and girlfriends. Finally, someone she worked for explained to her that Jenna Jameson was going to be at Joseph Bethm signing How to Make Love Like a Porn Star. And sure enough, suddenly the store emptied of guilty guys. This is not, I will add, how I got my copy. Nor did Bob get one. Mine came to me, as I said, by circuitous route which is much more boring to relate than this suggests, so I will not explain.)

Thursday, January 27, 2005

Good News

CT Scan shows huge reductions on tumors. So I'm scheduled for either three more chemos and radiation or seven more chemos and no radiation, with a decision to be made in six weeks.

Okay, this part of the conversation is going to make more sense to people like Sarah, Ruby, Heather and Greg (my fellow Hodgkinites). We talked about a port, but my side effects are neuropathy from the vinblastine and if I had a port, they might still happen. Decision this time--no port yet. And the neuropathy is painful but not serious and will most likely disappear when treatment is done.

And for all of you who have hovered near your computers waiting to hear my count*--TA DA! It was 2.4. Up from 1.36 last time. 1.5 is minimum for treatment and I am now smooth sailing and will not fall over in the presence of a germ.

*Remember, I said illness makes me a trifle self-absorbed.

I'm done and off to sleep.

Wednesday, January 26, 2005

Tomorrow, Chemo #5

Thursdays are chemo days, at least every other week. Oddly enough, Sarah and Heather (whose blogs are linked to mine) also both get their chemo on the same Thursdays, so across the country, first Sarah, then me, then Heather will get hooked up. My doctor will also have CT Scan results to go over with me. I'm hoping, if the CT Scans are good, that we may be done at eight treatments instead of twelve. (Four cycles instead of six, as they say in Hodgkins speak.)

I am, by temperament, a person who prefers to prepare for the worst, and so I began chemo expecting I would need twelve treatments (six cycles). I made all plans assuming that I would be doing this until May. Then my doctor palpitated the lumps on my neck and said that they were gone, and scheduled a CT Scan. I know that the minimum course is four cycles, eight treatments. If a patient looks clean at that point, the discussion is about whether to follow with radiation (which everyone calls rads), more chemo or nothing.

It's all a balancing of risks.

Known risk--Hodgkins, which untreated is fatal.

Unknown risk--ABVD chemo which can cause heart, lung and nerve damage, and has a very slight chance of leading to what are called secondary cancers. Cancers like leukemia, which probably are a result of the treatment. (Chemo is carcinogenic because it is mutagenic--that is, it can cause DNA damage.)

Unknown risk--Radiation, which can cause immediate damage from burning, and which has a slightly higher risk of secondary cancers.

So the way to reduce the risk of Hodgkins relapse is a full six cycles of chemo and then radiation. I'd be pretty much sure that the Hodgkins was gone. But I would have the maximum risk of damage and secondary cancers.

But if I minimize the risk of Leukemia in twenty years by not getting radiation, I may increase the risk of Hodgkins relapse.

This is something of an algebra equation and it gets discussed a lot on the Hodgkins list serve. According to my doctor, the oncology community specializing in lymphoma discusses it a lot, too. For weeks now, I've thought about it as something to think about when I get there. (One step at a time, or as Bob says, 'Baby steps, Maureen.') But if my CT Scan is good, I may be thrown into some of that discussion on Thursday. So now I'm thinking. And hoping that maybe instead of twelve treatments, I might do eight.

I tend to think hope is bad, because disappointment is soooo bad. But I can't help hoping.

Tuesday, January 25, 2005


This afternoon was a non-cancer day. I had work to do and Peter Kvidera, a friend and colleague from the university, was unexpectedly in the neighborhood so I packed up the computer and met him at three to work together. I feel good, and we talked a bit about teaching, and then worked companionably. It was nice to just talk about books, and work and not be so preoccupied with myself.

But this morning was not a non-cancer morning. The wig and I went to pick up my mother to take her to lunch and she had a terrible cold but still wanted to go out to lunch. I hate being afraid of her cold. I hate not knowing what to do about taking her out. So I took her out any way. I had a bottle of Purell (the hand sanitizer stuff) that Bob gave me stuck in my purse so I just kept using it on my hands and trying not to touch her.

Poor mom. A cold makes it hard for anyone to think, but for her, that meant she couldn't understand what I meant when I asked her if she wanted chicken or fish for lunch. She couldn't understand that she needed a coat (so I just took one out of the closet and put it on her.) She didn't eat much, but she was so desperate to get out I'm glad I took her.

Of course, if I get her cold, I may not be so glad. But I hate calculating that way. She demands so little.

Monday, January 24, 2005

Momento Mori

CT Scan this morning.

I don't mind CT scans, especially when, like today's, they don't require wearing a hospital gown or drinking contrast in instant lemonaide. I had an appointment for 9:30, got there by 9:10. I didn't know if I'd have to drink contrast, but I knew if I did, they have to wait twenty minutes after I'd drink it to do the scan, so I thought if I got there early, I could drink it and have a shot at getting out in time to take my mother to lunch.

Luckily, no contrast to drink.

There is a kind of waiting room culture. A set of behaviors. There were three people in the waiting room, all sitting the requisite two or three seats from everyone else. As a waiting room veteran, I have a serious interest in what magazines are available. I checked out the magazine stacks but it was all Sports Illustrated and Time. My preference for waiting rooms is People Magazine. I think I've mentioned before that I like People because if I get called in the middle of an article, who cares? I may never learn what caused Brad and Jennifer to break up, but I can live with that. The other people there, all looking in their fifties and sixties, and all with their own hair, were wearing their coats and waiting with their hands folded. The waiting rooms are warm and I get very warm these days, so I took off my coat and hat (I was wearing a scarf under the hat but it was pretty apparent I have no hair.) I realize, in retrospect, that my behavior is screaming 'chronic condition'. Everything I was doing indicated that I was way too familiar with the $1,200 procedure I'm about to get. I sat down and they called me right in, before the other people waiting, which surprised me a bit.

The CT Scan, from putting coat and all in the locker, to getting settled and getting the IV to the actual scan, to back to the locker to get purse and stuff, took about ten minutes and then I was back out into the waiting room. As I walked through the waiting room, I was suddenly aware that every person in the waiting room was watching me walk through and out the door. Not subtly, but obviously. Staring.

A CT Scan is a diagnostic, a way of looking inside. People get a CT Scan to find out what is wrong. Bald ladies who know the drill are a vision of a possible future. The worst kind of future.

A walking momento mori.

It was very weird.

Sunday, January 23, 2005

Dinner Out

Bob, me and the wig went out to dinner with friends last night. We went to a place called Blue Canyon, good food in a place as about authentic as my wig. Huge, huge restaurant where Bob got crab encrusted snapper, and I got black grouper on spinach risotto. I am obsessed with food, of course. So one of our friends, Linda, had some of my grouper (which was really very very good) and gave me some of her Lobster Mac 'n Cheese. Lobster Mac 'n Cheese should really require absolution after dinner. It's like fettucini alfredo in that it's too rich to make up a whole meal. But it does, and it's macaroni and cheese with lobster claws.

So why is the place about as authentic as my wig? Well, it's made to look like a huge ranch house--big peeled logs inside and out. It's been compared to the rustic lodges of Yosemite and the Grand Canyon. Only we live just outside Cleveland. The setting is carefully artful--it's perched on a hill overlooking the freeway but situated so that mostly what you see is rolling woodlands. But there has never been a big horn sheep in the area.

They specialize in beef and seafood. The seafood is lucky for me because since about my second chemo, beef and pork no longer taste right. Pork tastes as if it has gone off, and beef has this odd, metallic kind of dirt taste. I miss beef very much, but of course, what I miss is what I remember, not what I taste. I watched wistfully as steaks topped with exoticly-flavored pats of butter pass the table.

These days I try to plan dinner out with friends around my treatments. We have good friends--Pat and Gloria--who we used to meet regularly for dinner, but I haven't managed to schedule a dinner with them in ages. The window of fine dining seems to narrow each treatment. I can eat fine for two or three days after chemo, but I have no appetite and don't care what I eat and food isn't And the last time, mostly I just wanted to take long naps. Then come five or six or seven days of weird adverse affects of chemo, which are mostly minor, but make me leery of planning anything. Which leaves only four or five days to pack in everything before the next treatment.

I keep reminding myself, it's only temporary.

Tomorrow I get a CT Scan in the morning, and then my doctor will discuss the results with me on Thursday before my next chemo.

Saturday, January 22, 2005


Adam just called. He's at college at Rochester Institute of Technology. They're expected to get 60" of snow today and tomorrow.

He wins.

Vicodin Dreams

I've taken vicodin before, for shingles (which for three years I got annually, for some reason. It was always caught early so it never became horrible after the first time.) I knew that I couldn't sleep when I took vicodin. I get the nods, like a heroin junkie, dozing into a kind of half-asleep dream state, feeling warm and fuzzy and relaxed. What I had forgotten was that if I keep taking vicodin, I get vivid dreams.

The good news is that the arm pain is passing. It seems that once I kind of break through the pain, after that it doesn't come back nearly as bad, and yesterday, my happy painfree afternoon seems to have done it. But last night, after the vicodin wore off at three in the morning, I had incredible, constant nightmares that woke me up again and again. They were the kind of nightmares that aren't necessarily horrible to relate, but that woke me up in a cold sweat. I dreamed about a place where some people could do the things they do in the Matrix--float, flip, move strangely. I dreamed about Marines in a kind of video game scenario. And I dreamed about Superman and Lois Lane, from the old black and white television show of my youth starring George Reeves. I didn't even like the tv show, which struck me as hokey even as a kid, and I don't play video games. I just assumed it was the detritus of the sleeping brain.

But I realized this morning that they involved weird body invasions. The Marines were being controlled by a malevolent force, and I realized this when I saw that one of the Marines had a bullet lodged in his temple, frozen there with the flesh rippled around it like water in a pond when you throw a stone in. I knew he had tried to kill himself but the malevolent force had frozen the bullet in mid-penetration and now it was trying to get control of me. In my Superman dream, Clark and Lois were married, and everyone around them was being given a candy-like pill that make them part of a group mind. Clark and Lois were carefully evading the pills and trying not to arouse the suspicion of the hive people, moving constantly, looking for the source of the pills, until they were on a tiny spit of land at the edge of the ocean. Clark and Lois were on a balcony looking down at a plant like a waterlilly that was a source of the pills. In my dream, my view expanded, like a camera pulling back for a shot, and standing around the little building were thousands of hive people with black umbrellas, open, although there was no rain, patient and silent.

I am quite astonished at the obvious, clear metaphor of these dreams. The terror of bodily invasion. And really amazed at the strange poetry of the images my mind has coughed up. I'm glad to have recorded the images here, because otherwise I would forget them. Although if they show up in a short story, anyone who has read this blog will just have to pretend that they didn't.

All my life I have been strangely moved when people told me what they had dreamed. Sometimes, when someone will describe a dream to me, I'll have the sudden urge to cry. I think there is a kind of nakedness to our dreams. I don't think they are necessarily as meaningful as Freud did--when I think about the dreams I had last night I realize that I have discarded enormous amounts of material that didn't feel as meaningful as these images. But I think what we make of our dreams, when we impose narrative on them later, can be strangely revealing, the way the I Ching or Tarot cards can recast our world in strange and illuminating ways.

Friday, January 21, 2005

It's a Wonderful Life

Today is great! Well, okay, this morning sucked. But this afternooon the sun is shining off the snow and everything seems pretty much fabulous.

I say that after a two hour vicodin assisted nap, of course. Yesterday, the doctor left before Jeanette, the oncology nurse could talk to him about my arm pain, but this morning they conferred and he called in my prescription. CVS was backed up with prescriptions. I told them that my doctor had called one in and they said that they had it, did I want to wait? The wait might be forty minutes. Oh, yes, I said.

I get most of the family prescriptions there and I've chatted a bit with the pharmacist, but I wouldn't say she knows me. I'm not, for example, a regular. I was there last night to try to get a refill on my Tylenol 3's (prescribed at the Cleveland Clinic and filled at the clinic pharmacy.) She called the pharmacy to get the refill transferred but it was six-thirty (I'd been waiting for Jeanette to call) and the Cleveland Clinic Beechwood Pharmacy was closed. I confess, I could not hide my dismay last night when she told me she couldn't fill it--I was so tired of hurting and so dreading another sleepless night. But thanked her for checking, it wasn't her fault.

But, today, in the middle of a snowstorm-is-coming, get-your-meds-refilled-rush today, when the tech called back that I had come in and was going to wait, and I saw her head come up and I heard her say, "Yes, her doctor called." I was afraid she would think I was one of those people who doctor shopped for drugs, since the Tylenols with codeine were from the ENT who did my biopsy and the Vicodin was from Dr. Schnur.

I sat down and five minutes later was paged. Five minutes? The pharmacist came around and said, "I did just want to tell you, don't take the Tylenols when you take the other."

I said no, I had just hoped to use those as a stopgap until I could talk to the doctor, and thanked her. She smiled at me and then went back to where she was working. And then I saw the label on the Vicodin and decided maybe she didn't think I was some druggie, and maybe why my forty minute wait had been reduced to five. The directions are to take 1-2 every six hours for pain after chemo.

I admit, this time I was glad to be the cancer lady.

And now I feel warm and fuzzy and maybe a little loopy, and I probably shouldn't operate any machinery heavier or more complicated than a box of Kleenax, but the world is a wonderful, painfree place.

Thursday, January 20, 2005


Perhaps the least comfortable day I've had so far. Pain in my joints and muscles of my left arm and shoulder. It's the arm I got chemo in, and my last treatment was a little more difficult. Chemo drugs are caustic and I had problem with the particular vein.

So tomorrow the doctor will get back to me with instructions. Tonight I'm to take a lot of ibuprofen.

As life threatening illness symptoms go, this is less painful than when my mom fell on the icy driveway and broke her upper arm and dislocated her shoulder. But I am moping a bit and whining. Hence no brilliant post. Or insightful. Or, well, entertaining.

Tomorrow will be better. I'm hoping for vicodin. (Always a cause to celebrate.)

Wednesday, January 19, 2005

Stockholm Syndrome

My doctor is the best. He's wise, witty, compassionate and an expert on lymphoma. He taught at Case Western Medical School. My two favorite oncology nurses, Jeanette and Pamela, have a combined total of over forty years experience in nursing, most of it oncology. And they a sharp, deft and funny. My doctor and my oncology nurses like me a lot. They are invested in my cure.

I believe all of that.

What I know for certain is that I am invested in them.

Classically, Stockholm Syndrome describes the reaction of people who are held captive and threatened with death by someone--but that person shows them some acts of kindness as well. Captives often grow to identify more with their captors than with the people who might be trying to save them--like say, the police. My doctor and my nurses (note that my doctor and my nurses) neither hold me captive nor threaten to kill me. But they do threaten me with death in the sense that they have told me I might die. And they do things to me that are painful and distressing. And they show me lots of small kindnesses.

Most importantly they are going to save me.

When I read other people talking about their experience with Hodgkins, I see that many of them are very attached to their doctors and nurses as well. I read a post where a woman said her oncology nurse was leaving, and how she couldn't type that without crying. I've had jobs where people left, I've had friends move, and while I might have been sad, I've rarely cried. But I wasn't as afraid as I think I would be if Dr. Schnur quit practice. Or Jeanette and Pamela left.

Now Dr. Schnur is perfect. But for hypothetical reasons, lets assume he was like everyone else's oncologist. And remember that 50% of all doctors are, by definition, below average. That means that some of the doctors those other people with Hodgkins have are below average. In fact, I know some of them are prescribing treatments that are no longer current because first of all, it's not the chemo regimen that Dr. Schnur is prescribing, and well, it's also not the regimen described as current on the National Institute of Health's pages of information for medical practitioners treating Hodgkins.

What would I do if my doctor seemed to be doing something that felt wrong? I'd like to say that I'd get another doctor. But there are articles that indicate that radiation treatment after a course of chemo does not seem to improve chances of survival in Hodgkins Stage Ia and IIa. What will I do if Dr. Schnur prescribes radiation? He has told me that the Lymphoma Oncology community is split down the middle about the issue, and he has told me that we'll talk about it after eight doses of chemo. And if he prescribes it, I'll do it, despite my worries about secondary cancers later on. (Secondary cancer--leukemia as a result of treatment for breast cancer--is probably what killed Susan Sontag.)

Why? Transference. Stockholm Syndrome.

Because I am in the wilderness, and Dr. Schnur is my guide. I am emotionally attached. Because deep down I know he loves me and he's going to save me. Because otherwise, it's pretty lonely out here, even with Bob and all you guys.

(Poor Dr. Schnur. If he ever read this he'd probably be mortified.)
Bob found this and I may have to own it.

Tuesday, January 18, 2005

The Selfishness of Sickness

Culturally, we have this thing about people who are sick, victimized, marginalized, or damaged. It puts them outside of the flow of every day life and makes them wise. Noble. I'm prey to it, I've been writing books about outsiders my whole career. Being an outsider can mean being able to see others.

What is most annoying about this whole Hodgkins thing is that it is doing the exact opposite to me. It's making me self-absorbed. The sick spend a lot of time self-monitoring and even someone like me, who has had relatively few bad affects from all this, notes every ache, every twinge. My world has shrunk. I am the topic of my every conversation, the object of my own fascination, and while this has pretty much always been true, having no hair means other people ask me about myself and my health. And when I tell them, they tell me how great my attitude is. Before, like most reasonably socialized people, I had the good grace to be an adult and hide some of my self-interest. Now, I expect to be the center of attention.

When I started this blog, at least I had some interesting things to relate--about Hodgkins and about what it is like to get a CT Scan and a PET Scan. But like many illnesses, mine is mostly undramatic. (And may it stay that way. Drama is a bad thing in illness and airplane flights.)

There are a number of different styles of blog and journal on the web. Some of them seek to provide information on a topic. There are a couple of good ones on lymphoma where people try to provide up to date information on treatment and research. There are a ton of blogs where people function as editors--they search the firehose of the web and post good stuff. An interesting phenomena. And in retrospect, an obvious one. If the internet is a place where everyone can read slush, the internet is also a place where everyone can be an editor. (Except being an editor takes an element of self-discipline that posting slush may not.)

There are blogs like mine, which are about someone's personal experience of a certain topic. Spelunking, maybe. And there are blogs about being someone which are interesting if that person creates a persona on-line worth reading. (And boring if the person doesn't--but those pretty soon don't get read.) My preference in blogs is towards the personal experience ones, either organized around a topic or organized around someone's personality.

I am aware that there is more to this blog than me just nattering on about my aches and pains. It does provide a couple of things--for my friends, it's a place to check. Yep, she posted today. Even if you don't do more than skim it, it's a way to see that basically things are okay. And it's an astonishment to me that people want to check. (Okay, part of me is convinced that everyone wants to know everything I do, but I'm also pretty convinced that I'm a boring person and a lot of the time people are just being polite. If nothing else, having Hogkins has made me feel more cared for than I can possibly explain.)

And this journal is also a place for Sarah and Heather, who like me, are having this little adventure. So we can say, 'Yeah, I felt like that,' or, 'No, thank God I didn't ever think that.' I don't think this blog is a complete exercise in narcissism.

But I would just like to state for the record, that I am having one of those days where I am more than a little tired of myself being sick.

And now, I think I'll go have a little nap with the miniature dachshund. She, at least, is glad I am sick because it leads to naps. And given that this morning is was nine degrees, the more opportunities she has to cuddle up with someone, happier she is.

Monday, January 17, 2005

Cancer Lite

I guess for the first time I've had a real taste of chemo fatigue and a bit of nausea. I sure can't say it's awful--I went to Curves this morning and exercised so how bad can I really feel? But I slept a lot this weekend. Huge, four and five hour naps. And even more shockingly, I didn't eat much.

Now I've gained about six pounds during chemo, so not eating is really nowhere near a problem. And if this is as bad as it gets, I will still be sailing. I really am experiencing Cancer Lite. But I hate it. It's the first time I've actually not done something because I didn't feel great. (I didn't go to my writer's group on Sunday because I just didn't have any energy.)

In other news, it's snowing. Okay, that's not news.

Sunday, January 16, 2005

Fan Mail

Received via email today:

Dear Mrs. McHugh,
My name is Gordon Morrisette, a few weeks ago I read your short story "The Cost to be Wise" in the _The Year's Best Science Fiction: Fourteenth Annual Collection_. For my eighth grade English paper, which I have almost completed, I must include three people's definitions of love. I'd really like to include your definition of what love is, as I feel your definition would be very insightful. I appreciate your input..

Thank you very much,

Gordon Morrisette
Mr. Sonnenblick's Advanced 8th Grade English
Phillipsburg Middle School

The Cancer Lady

Last week I went to get lunch at a restaurant, carting along my book (China Mieville's Iron Council) and decided to try a place that opened a couple of months ago. There was only one waiter on duty for about a dozen tables but only about half a dozen tables had customers.

The waiter was tall and young and extremely personable. He had that gay vibe I particularly appreciate in a waiter (whether he was actually gay or not being beside the point.) He seated me and got me my drink and then, being stretched by being the only server on the floor, apologized and took off. I checked the menu, opened my book, happy. The owner/chef came out and talked to a couple at another table. Then stopped by my table and asked me if I had any questions.

I did, actually. Ragu bolognese was on the menu and I love a real ragu bolognese, so I asked him about it. He looked a little non-plussed, but told me how they made it and as a bolognese should be, it was finished with milk. Sometimes pork or beef tastes odd to me, but this was only a day or two before my next chemo, when I feel the most normal, so I ordered it.

My server brought me bread, 'Because I had said I was hungry.'

Then my salad.

Then he stopped to enquire. 'Everything all right, sweetheart?'

Then topped off my drink.

I love attention, don't get me wrong. But every time I looked up from my book, it seemed as if the server was giving me a smile.

My pasta arrived, a dinner sized serving rather than a lunch sized serving. It tasted a little off to me (the damn chemo) but I felt compelled to eat a whole lot of it, since I'd asked. And especially since the server made a point of making sure everything was okay, and then came back a minute later and refilled my drink.

More solicitous attention.

It finally occured to me what was up. Here I am, bald under my cap, with my book, bravely carrying on as if nothing is wrong. The Cancer Lady.

Of course, the truth is, I just really wanted a good lunch and to read my book and although I understand the impulse to solidarity and support, in my heart of hearts, I just wanted to read my book. Not be a poster child.

It is very nice of people to be solicitous. A good deed. I left a hefty tip. And I am a callow wretch for not appreciating it more. But I didn't. So I have discovered an important lesson. If I want to disappear, wear the wig.

Saturday, January 15, 2005

Dr. What

I got a package from Dr. What in the mail yesterday. Inside was a tiny prescription for one pill, with the pill attached.

Maureen McHugh
Take at night
and feel better in
the morning.

Dispense 1

Dr. What

The pill was in one of those Fort Knox style pill packages, where you have to peel the foil back. The plastic dome was perfectly white and opaque. I flipped the package over and it said, 'Placebo.'

Bob instantly coveted it, but I told him that he couldn't have it, I needed it. Dr. What, I am keeping it for the night I really need it! Thank you! Thank you!

Denial, it's Not Just a River in Egypt

Periodically I will experience something--I had numbeness and tingling in one hand and fingers after my first chemo, although it went away and never came back--and I will think, 'maybe I shouldn't do this chemo stuff.' And then it will occur to me that a little neuropathy beats the alternative.

Chemo is profoundly unhealthy. I eat weird. It reduces my ability to exercise. It may very well have longterm or permanent effects. Treatment for cancer undoubtably caused the leukemia that killed Susan Sontag. But that's a little like saying if you go outside without your shoes when the house is on fire. The house is on fire. Frostbite isn't fun, but it beats the alternative.

Luckily, my course is short and the adverse effects are minimal. (I'm tired today, two days after my last chemo, but mostly pretty much normal--might be time to whip out the fainting couch.)

It's difficult to feel as if I have a life-threatening illness. It's more as if I am inflicting an illness on myself. I had no symptoms before the chemo.

Hodgkins is treated according to what stage you're in.

I'm in stage II or stage III (stage II is more than one locus of involved lymph nodes, all on the same side of the diaphragm, stage III is both sides of the diaphragm, and the PET Scan showed pinpricks of activity in my pelvis that may or may not be signs of affected lymph nodes.)

It's also divided into 'a' and 'b'. People designated 'a' have no symptoms beyond a lump. People designated 'b' have symptoms--night sweats and itching are common with Hodgkins. Since I had no symptoms, my disease, other than that cluster of tiny wine grape sized nodules on my neck, was pretty hypothetical, at least in terms of my own experience.

It's still weird to have a disease like this without ever having to, for example, spend the night in the hospital (knock wood.)

So periodically Bob and I will joke about how we've had the experience now. It's brought us closer together, made us more grateful for things, yadda, yadda, yadda, but we're done. 'Sorry Dr. Schnur, you were great, but we've decided no more Hodgkins disease. It's just too inconvenient.'

Then we get all careful again, lest we somehow tempted fate.

Friday, January 14, 2005

Life as an Invalid

When I was first starting chemo I wanted, in the stupidest way, to be no longer responsible. To be sick, which I imagined mostly as lying languid like some figure in an 18th century romance, watching DVDs from Netflix. Everyone said exhaustion is the worst symptom and I figured, hell, I don't have a day job, how hard can it be to be tired?

Of course, now I'm busy. Not horribly busy, but the schedule seems just as full as it ever was. My vision of Hodgkins as a kind of weird, epic vacation is fading fast. For one thing, I feel better if I'm doing stuff. This seems horribly obvious now, of course. So I exercise--not as hard as I used to because if I work out hard my joints ache. But if I do a light work out, I've got more energy. I'm doing a freelance gig. Not like the days of ilovebees--this one is much less work (at least for me.) A friend of mine and I are trying to get a theater project going. I've got a short story to revise, a book to read for my book club, stories to critique for the two writer's groups which managed to schedule their meetings for the same day. We keep getting invited to friend's houses for dinner.

In other words, life goes on.

I wish I could tell you that now I savor it, but that wore off really fast. It is amazing how quickly it just becomes...well, every day life.

The doctor looked at my chart--this is the end of my second chemo cycle and halfway through as I said yesterday. He ordered a CT Scan to see how it was going before I start cycle three. He can find no evidence of Hodgkins in my neck by palpitation, which is so weird because it was there a week ago. But I have prodded myself bruised in delight and he's right. I still have a lump of scar tissue from the biopsy, but not that cluster of nodes, like tiny wine grapes only hard.

It is amazing how casually oncology orders things like CT Scans. A CT Scan takes fifteen minutes and costs something like $1400 (which in my case is completely paid for by insurance.) But when oncology says jump, the Clinic jumps.

My blood count was nearly the same this time as the last, 1.36 instead of 1.4. But I don't work with the public anymore and Dr. Schnur is so please by the way I am handling the rest of chemo (no real pulmonary or cardio effects, no neuropathy, no real sickness, no sudden disastrous plummet of blood count, no infections, and lots of other 'no's) that he says to keep going.

But I know I'm going to get more fatigue as this goes on, and I haven't completely given up the idea of my fainting couch in from of the DVD player...

Thursday, January 13, 2005

Not Delayed!

I never thought I'd same 'I'm really hoping for chemo.' You know it's one of those perfectly normally contructed English sentences that I could have imagined saying. Buy I did. And despite the fact that I'm still hovering at 1.4 they said, 'okay.'

Dr. Schnurr can find no evidence of tumors in my neck by palpitation. They scheduled me a CT scan for a few days to check the tumor at my aorta (a mediastinal mass in the langueage of Hodgkins.)

And now I am stupid and toxic and mildly headachy--but pleasedand happy, so good night.

Wednesday, January 12, 2005

Chemo 4, Half Way

I'm scheduled for eight chemos (four cycles) and then an evaluation at which point we will talk about whether I'm 1. Done, 2. Need four more treatments, 3. Need radiation. (My money is on a total of twelve treatments, which seems not unusual.)

Tomorrow is chemo 4, which is half way to something, even if it's only halfway to another CT scan. After the last chemo, I actually did pretty good. Less adverse affects than before although more initial fatigue. Tomorrow's chemo book is Iron Council by China Mieville. I figure once I start to have trouble with Mieville's language, I'll just nap or something. I figure I'll ground to halt at some point on baroque sentences like, 'What circled around and over the city's upreached fingers? Birdlife, aerial vermin, wyrmen (laughing, monkey-footed things), and airships of cool colors, and smoke and clouds. The natural inclines of the land were all forgotten by New Corbuzom, which rose or fell according to quite other whims: it was mazed in three dimensions. Tons of brick and wood, concrete, marble and iron, earth, water, straw and daub, made roofs and walls.' Mieville's pleasure in inversions (ending the last sentence with the subject instead of 'Roofs and walls were made of tons of brick and wood...') is a signature of his prose, and not particularly a problem for me when I'm clear-headed, but gets difficult if I'm really tired or moderately stoned.

I am mildly apprehensive. I went into my first chemo glad to have finally started and really curious. I'm not curious anymore, I have to admit. After my last chemo, for days I would get queasy if I thought about popsicles. (I suck on something cold during part of the chemo to reduce some adverse affects.) I am more apprehensive that the chemo will be postponed because of my white blood count being low. I have been eating my vegetables and taking my vitamins and exercising. And visualizing. So here's hoping. If I dont post tomorrow, it's probably an indication that I had chemo, and so good news.

Tuesday, January 11, 2005

My Favorite Blog Post

THX1138, I'm ready!

I've been hinting and looking puppy-eyed and making myself a nuisance and last night, Bob gave in. He got out the beard trimmer and carefully shaved my head.

And I'm free! No more six inch strands of thin hair covering my scalp! I sat there with a big smile on my face the whole time he was doing it! And my scalp feels so cool! I keep running my hand across the very little bit I have left (he basically gave me a tight crewcut.)

He wins husband of the year award. While he was doing it, he said, "This may be the weirdest thing I've ever done."

I said, "It is not."

He said, "Okay. Second-weirdest?"

And he says I have a great shaped head.

I'm so happy, I'm running around with no hat! I don't look like an unkempt crazy person anymore! I look like a character from a science fiction movie! Is that cool or what! Of course, what I really didn't understand is that my head would get cold. I really was down to about ten percent of my hair before and I really thought there wasn't enough there to make a difference, but hair must be a great insulator. Last night I slept in a cap. Do guys who get a tight buzz cut notice that their head gets cold? Are guys stupid enough to get a tight buzz in January?

But I still love it. I keep running my hand over my slightly stubbly head and grinning like a madwoman.

Monday, January 10, 2005

Learning the Native Dress of my New Culture

I gave a talk yesterday at the local library on resources for writers in the area. (There are a lot of places to take classes, ranging from an MFA program to classes given by writers at the Poets and Writer's League Literary Center.)

Giving the talk is no big deal--I do this kind of thing relatively often. The big deal was figuring out what kind of head-covering to do. I still have normal, thick eyebrows and eyelashes, but my hair is of course a fright. I have my beautiful silk scarf, but it kind of proclaims I have no hair underneath. I didn't want the focus of the talk to be, wow, that chick has no hair. Does she have cancer? So I wore the wig.

I carefully made sure it was properly centered and Bob inspected me and proclaimed me symmetrical. (He's an engineer, symmetry is important.) I sort of moved my head around. The hair is mounted on an elastic net. Not elastic in the sense of underwear elastic, elastic in the sense of give--it's got more of the feel nylon, I guess. When I moved my head, the back scrunched up a bit. Imagine a bathing cap, and how they kind of wrinkle a little.

But in the mirror there was no difference. So I figured I could ignore it and took off.

In the car I had to fight the urge to tug at it. I guess it was a little like wearing nylons for the first time. I got to the library early and met Carol My Favorite Librarian. Then she took me back to the meeting room where I was scheduled to speak to a whopping 41 people about how you can learn stuff like technique and how to write a proposal if you live in the greater Cleveland area.

As I talked, I could feel the wig sort of creeping back from my forehead and up from my neck. Remember the bathing cap? Well imagine it riding up so that there's a noticeable amount of space between it and the back of your head. I talked about forming a writer's group. I talked about colleges that give courses.

Wig scrunched.

I told myself I was just self-conscious.

I talked for forty-five minutes and then let them ask questions.

Hands shot in the air. Lots of them. I started pointing to people and answering questions. By this point it felt as if the wig had moved back on my forehead at least an inch. I began to imagine that sparse strands crossing my scalp were showing. Were people trying hard not to notice? There were people I knew in the audience, and surely Carol would be unobtrusively signaling me if I was beginning to do the deranged-bag-lady-in-a-wig look. But Carol was talking to Bob, the guy who lives in the Victorian house with the beautiful yard that fills with spills of tiny white rockcrest flowers every spring. I tried to catch her eye, but someone else was waving their hand.

I know writing students. In their desperate quest to get their questions answered, they will keep you talking long after it is decent. And normally I wouldn't mind.

Hand up. What do I think of self publication?

I think it has a long and storied history, but there are problems with things like distribution.

Well, there's this company, the guy says. They promise that for a fee they will publish and get it on Amazon.

Getting a book on Amazon doesn't mean anyone will actually look it up, I explain. And newspapers won't review it. And if you pay someone else to publish, that's a vanity press. If you have to self-publish, you might at least consider doing it yourself.

I'm reduced by this point to looking for reflective surfaces. Glasses, am I reflected in anyone's glasses? The wig feels as if it has scrunched to the size of a yarmulke. Surely, people would be reacting if it had?

Finally, forty-five minutes after I start taking questions, Carol stands up, thanks me and thanks everyone for coming. At last, I can flea to the bathroom. But no. Half the audience heads towards the front of the room to tell me what a great presentation it was. And they want to shake my hand and say thank you. Shake my hand? Are they insane? My white count is in the effing basement!

But I stand and smile and feel the wig creep and now my head is itching. I tell people to keep writing. I turn down the offer of cookies. (Not before I wash my hands, sorry.) And finally I do escape.

The wig, of course, looks fine.

Sunday, January 09, 2005

The Enemy Within

I was reading Sarah's Babeland blog (she has Hodgkins as well.) She mentions finding lumps. Which got me thinking about how Hodgkins has turned my body into a vaguely alien landscape. Or at least a landscape invaded by aliens.

When I was diagnosed I had a cluster of lumps nestled in the base of my neck, just above my collar bone. Like a cluster of grapes. I would feel it and think, 'This is cancer.' It was me/not me. It was the enemy within. The alien. It was lethal. The anti-pregnancy.

I wanted Bob to feel it, but I was also afraid that if he did, I would become contaminated in his eyes and that he wouldn't want to touch me. But irrationally, I made him do so. (And he has never, ever made me feel contaminated. For awhile he treated me as if I was a little fragile, but he has hugged and smooched like always. Bob clearly believes you should hug early and often.) I don't know why it was so important to me that someone other than the doctors, that Bob know what it felt like, but it was.

I check on them sometimes. I'll go a few days, maybe a week, and then I'll check so often that I get sore. Some people's lumps are gone after treatment 2, but mine are still there after treatment 3. The doctor asked me, 'Are they smaller?' and I answered him honestly that I didn't know. I think so. But I'm not sure how much is wishful thinking. And then there's scarring from both the chemo and the biopsy.

Sometimes, a couple of days after chemo, they hurt. This is a good sign, the doctor tells me. They are dying, I think, fused and melted like the skin of a burn victim. The 94% cure rate for Hodgkins helps. I can go days without thinking about them. But it is very strange.

Saturday, January 08, 2005

Test Drive

I took the hair prosthesis out for a test drive yesterday. I wandered into the bathroom yesterday morning and thought, oh my, things are getting very patchy. I had to go get a prescription filled for my mom and pick up one or two groceries, and I thought, well, this is a great time.

Back down the hall to the office where I keep the wig. When it's in the bathroom on the ledge by the tub, if I catch a glimpse of it on it's styrofoam blockhead, it always makes me double take thinking that someone else is in the bathroom. So I keep it in the office on a stack of literary magazines that I have to take back to my office at the university next fall.

The wig looks weird to me. I part my hair on the left, so the wig is parted on the left. But of course, when I look in a mirror, I always see a mirror image of myself. So the wig looks to me as if it is parted on the wrong side. When I first tried it on, it sort of sat on top of my rather dense mass of hair. Now I pulled it on and low and behold I didn't even need to fuss. It looked rather touseled, but anyone who knows me will know that touseled is my normal state. I fiddled with it with my fingers for a moment and sailed out to the car.

The wig is roughly the same color as my hair, without gray or highlights. I could get with gray, or with highlights but not with both. So I decided not to worry about it. The wig fit pretty snug but the net cap would ever so slightly bunch, like your socks do. I kept thinking it was not right, but I'd look in the mirror and it was fine.

I told a couple of the people at the assisted living where my mom lives, because I always take her to lunch on Mondays and Fridays (Bob Evans, where the waitresses all know her and know she doesn't really understand what is going on.) So I sailed in and said, 'Edith, I'm trying out my fake hair.'

Edith, the receptionist, did that thing where you stop looking at a person and look at some aspect of them, her eyes shifting from my face to my hair. Then she said, "Cute! And it looks like the same color as your hair!"

Basically, no one noticed unless I told them. And most importantly, my mother obviously noticed nothing different.

By the time I got home, though, I was tired of thinking about it, and unable to avoid my tendancy to tug and mess with it. It was something of a relief to get it off.

Thursday, January 06, 2005

In the Infusion Room

Greg F. sent me a Year's Best American Poetry (1995) with a poem in it called "In the Infusion Room". It's a nice poem, and after I read it, it occured to me that people often ask me, 'What is it like?'

So this post is going to be full of graphic discussions of IV needles and the business of saline drips and if any of that bothers you, you so don't want to read it. But if, like me, you have a morbid interest in that kind of thing, I'll tell you what it is like in the infusion room.

I get my chemo at a branch office of The Cleveland Clinic. The Cleveland Clinic in downtown Cleveland is a twenty block long sprawling complex of buildings, and it has satellite buildings in the surrounding suburbs. I don't go to a hospital for my treatments, I go to a complex with an out patient surgical facility, labs, CAT scan, oncology unit, doctor's offices, gift shop, cafe and God knows what else. I take the elevator to the third floor, the top floor, where a rather bland, run down office-looking hallway leads to a set of glass doors and a very pleasant, rather large waiting room. I check in at the desk and sit down in the nearly empty waiting room. There's seating for fifty, but I've never seen more than six or seven people there.

The nurse calls my name and I head back to the doctor's examing room and I get asked a series of routine questions. Then another nurse comes in, often Jeanette, the first oncology nurse I ever met, and plunks down a pillow, and asks me if I have a preference in veins. It's odd how important the nurses are. I heard someone say one time that doctors keep you alive, but nurses make you well. Jeanette has been an oncology nurse for over twenty years and she has that nurse-unflappability that is so reassuring. I don't have a preference in veins. I figure the person who is going to be sticking the big-ass IV needle in me should probably decide what they think is the best vein. Nurses have different preferences. I often end up with the classic, crook of the arm vein, but I've had them in the side of my hand and in mid forearm, too. The good thing about the nurses (and the lab people) at Cleveland Clinic is that they've had a lot of practice sticking big-ass IV needles in veins and they tend to do a good job of it. I'm not squeamish about needles. I am blessed with the ability to tolerate getting stuck. Some people aren't. Some people have a port installed in their chest that remains there for the months they are getting chemo. It's about the size of a bottle cap, and since I tend to sleep on my stomach, I think it would be a royal pain.

So I get stuck, and then the oncology nurse draws two vials of blood and those are sent to the lab for CBC or Complete Blood Count. For me the important number has been the White Blood Count. Normal for an adult is 4.5 to 11.0 and the last two times my count has been 1.4. 1.5 is sort of the minimum. It take about twenty minutes to get a count, and during that time, the doctor usually shows up and asks me a series of questions. Shortness of breath? Nausea? Chest pains? And then I ask him a series of questions. What do I do when my arms hurt? Then the oncology nurse reports the count to him and the discussion ensues as to whether we're going to do chemo considering my blood count, and then we do chemo.

The Oncology Unit is in two wings, one side a regular doctor's office, and the other side a huge, more clincial looking, slightly chilly room with a nurse's station in the middle of it. There are rooms rather like examing rooms around three sides of the big room, and on the fourth side are rooms without a fourth wall. Those are my favorite rooms, because the chairs all face huge windows that look out on Cedar Avenue and the parking lot. They tend to fill up first. I get my chemo later in the day so Bob can pick me up after work, so I tend to get one of the little side rooms, the ones like an examining room. I am shown to my room, carrying book and pillow and being a little gingerly about the big-ass IV needle still stuck in me. Instead of an examining table, they have chairs in them. They look a little like lounge chairs, if lounge chairs had been designed by the people who do dentist chairs. When I walk in, I'm two weeks from my last chemo and feeling pretty good.

There's one room where there are two chairs, but everybody else is pretty isolated. A lot of people have someone sitting with them while they get their chemo, a spouse or a daughter. Lots of the people are women wearing scarves or turbans.

I get my chair and then a soft drink and sometimes a blanket. The oncology nurse hooks me up to an IV stand with a pump mounted on it. She gives me an ativan. She hangs a bag of saline and clips it into my IV line and then uses a syringe to check to see that when she draws back, she gets a return. A blood return means that when she draws saline back, a little blood comes up the transparent IV line. This shows that the IV needle is still seated right. Then she starts the pump/monitor and leaves. The pump regulates how fast I get the saline. The saline is just to flush. Flush what, I'm not quite sure. When she comes back she hangs a bag of Decadron, a steroid. It's an anti-nausea drug that lasts for about four days. You'd think that if I was mainlining serious steroids I'd notice something but it doesn't make me feel any different from the saline. She goes away and the IV pump/monitor marks the time and dosage. I read. Since I am usually reading for my book group, I tend to be reading rather intense and unhappy books. I'm thinking that I should probably start selecting lighter reading material.

After the twenty or thirty minutes of Decadron, she comes back, checks the return, and hangs vinblastine, the first chemo drug. Fortunately, it has just about as much immediate affect on me as the saline. I read some more.

The nurse comes back and asks me if I'd like lemon ice or a popsicle. She's going to give me bleomycin and adriamycin by push and both drugs are known to cause mouth sores. Sucking on ice reduces the mouth sores because it reduces the circulation in your mouth so not as much of the drug gets there. These are the first drugs I actually feel different and I have delveoped a strong aversion for popsicles as a result. Thinking about popsicles as I type this makes me queasy. Next time, I'm getting ice chips. I suck on whatever frozen thing I have chosen and the oncology nurse sits down with a syringe and feeds the adriamycin into the IV by hand. It's bright, trasparent red, and when I urinate later, my urine will be peach colored. We chat and she watches like a hawk while she does the push. Then the bleomycin. It takes about ten minutes per drug.

I find myself every so faintly queasy about this time. It gets hard to concentrate, and in fact it gets a little difficult to focus while reading. My arm is cold because the drips and drugs have all been at room temperature, and although I don't have a sensation of coldness while they are going in, I do feel as if I had been wearing a coat slung over one arm and the other arm were exposed and slightly chilled. By this point I've had the needle in for hours and since it's long, it's beginning to irritate slightly.

The good news is there's only one more drug. The bad news is that its Dacarbazine. It takes about an hour. The oncology nurse gets very intense about blood return at this point since if dacarbazine doesn't go in a vein it hurts like hell. She hangs the bag. She starts the pump. In a couple of minutes I feel as if my arm is mildly cramping. She comes back and checks on me and sometimes slows the drip. Last time she brought me a warm blanket and covered my arm and that seemed to make a delightful difference. I'm always in a quandry. I don't want her to slow the drip because that means it will take longer to finish. So I sit with a little bit of discomfort hoping to cut ten minutes off my time in the chair.

By this time I'm pretty much just feeling wrong. Not bad, just wrong. I've been sitting here for about three hours. I can't read, and I feel kind of punk. I lean my head back and check the time left on the IV. Then I make myself wait and lean back and check again. I wish Bob would show up early so I would have someone to talk to, although I really don't know if I want to talk. And then he does, and before too long, the IV pump/monitor chimes and I'm done. The nurse hangs some saline and I flush again for ten minutes. Then she pulls the IV.

I stand up and my legs are weird. I'm not dizzy, but I'm on the outskirts of it. I can't quite seem to do fine visual focus. The oncology nurse hands me a printout confirming the date and time of my next appointment. Already I know that tonight I'll be zombied. Tomorrow I'll feel good, and the day after that as well. The steroids make my cheeks pink for a few days. Then I'll have a bit of a problem with sore mouth. Not much, then seven days of mild arm and shoulder aches. Then two really good days and then back in the chair.

Some people get anticipatory nausea. They start throwing up the day before chemo. I don't throw up at all. It's not horrible. It's just...chemo.

Bob mentions food and I'm not at all sure about the idea, but since I have usually eaten next to nothing this day, we stop and I get soup. Which helps. And then home and to bed.

That is what it is like for me in the infusion room.

Rhythms of Treatment

Halfway through the third treatment period, I am learning the cycles of how my body handles the chemo. The day of I am not uncomfortable so much as just out of it. Then a couple of days where the steroids have me pumped up and I feel weird, but good. Then some mild mouth soreness for a few days. About five days after chemo I get aches, mostly in my arms and back. During the day they don't bother me, but at night, of course, I use them as an opportunity to not sleep. (Check out Leslie What's blog for a nice discussion of not sleeping.)

The last couple of days I'm pretty much completely normal.

All of this is realy easy to tolerate, but the first cycle, it was all a little scary. You know, the hypervigilant thing. Now, it's kind of no big deal. I know that the Tylenol won't really do much for the aches, so I will have to break down and take a Motrin, even though it mildly depresses white blood count. Life is amazingly mundane.

Funny thing, that. Here I am having this rather life altering experience and mostly it feels about as exotic as going to the grocery. We homo sapiens are an adaptable bunch, I guess. What am I really worried about? Thanks to David Moles, I am now worried about antibiotic resistent bacteria. I'm already buying meat that was raised without antibiotics, but David has a link to a Bruce Sterling column which makes it all so...horrifyingly Sterlingesque. And me with a punk immune system

Wednesday, January 05, 2005

Immune Soup

I read an article in the Akron Beacon Journal this morning about ways to strengthen your immune system in flu season. I've had a flu shot, but strengthening my immune system still sounded good. It said eat an array of fruits and vegetables and recommended vegetable soup.

That was advice I could get behind. Of to the grocery store to buy chicken broth and a chicken and vegetables including a sweet potato--because sweet potato was strongly recommended. I boiled the chicken in stock with onion and garlic until the whole house smelled of it. I threw in a bouquet grani that was heavy on the black peppercorns. For dinner I made bread and we had some of the soup thickened with a little flour to make stew. The sweet potato I bought turned out to be very pale but it was good. With carrots it added a touch of sweetness. Sometimes I put a little apple juice in my chicken vegetable soup--it's something they used to do in the 18th century and I like the touch of it. But today I thought onion and garlic and pepper were more, well hearty.

Outside is freezing rain. Inside, the house is warm, the fire is going, the dogs are barking at the deer wandering down our street. And I'm sure my immune system is heartened.

Tuesday, January 04, 2005

Back At Work

I've got a little freelance gig and I spent all day yesterday working, so no blog entry. How good it feels to be doing something instead of concentrating on myself!

Adam is back in school. I was worried about driving him away by being sick, but Saturday, Bob was out and I was lying down and I got a phone call. Adam knocked and brought me the phone and there I am in bed, no hat, wisps of hair like some demented and ancient creature stuttering, 'Give me a minute,' but he doesn't.

He waited while I took the phone call and then plopped down on the edge of the bed. He just wanted to talk about his dad. He wanted to know if his dad was unusually distracted or if Bob was always like this and Adam just never noticed. Well, Bob can be distracted but he has been worse lately (holidays, me sick, everythign topsy-turvy) and I told Adam that he wasn't the only one who had noticed. We talked for awhile and then Adam wandered off to get farther on Grand Theft Auto San Andreas. Adam is very much not a touchy kid--I would say he has spontaneously hugged me maybe half a dozen times and most of those were when he was eight or nine. But as he walked out in the garage to leave for college Sunday, he turned around and held out his arms and walked back and said, 'Hug.' And gave me a big hug.

I am always underestimating him. Does everyone underestimate their kids?