Nausea (and not the existential kind)

Cleveland is, unfortunately, pretty far north. My sister, who was supposed to leave tomorrow, left today because tonight we are supposed to get freezing rain followed by eight inches or so of snow. For me, eight inches of snow is kind of ho-hum, but for my sister, who lives in Las Cruces, New Mexico, it is not such a blase matter. As she said, she hates when they de-ice the wings of the plane. She left me with a freezer full of a home made spaghetti sauce and some cheesy-potato soup in the fridge. She is a good sister.

Today is the first day since chemo on Thursday when I haven't felt nauseated. I managed to eat--I always manage to eat. But I slept way too much and ran a low grade fever yesterday and pretty much moped and pined a lot. Today I celebrated my newfound appetite by taking Adam to Handel's, our local premium ice cream place. I cannot tell you how good a chocolate shake tastes when you've been minorly miserable for a few days.

Which leads me to wonder how anyone who has had morning sickness ever brings themselves to get pregnant a second time. I don't know that my nausea was like morning sickness, but how different could it be? I felt queasy. I found that television is saturated with images of people eating. The only thing I will say is that there doesn't seem to be any foods or food smells that trigger nausea, so while my sister was making spaghetti sauce, I was in the strange position of being really hungry and sick at the same time.

I now have two anti-nausea medications--my beloved ativan and compazine. Compazine, while primarily given for nausea is also occasionally given for schizophrenia. What is the link between nausea and mental illness?

Lax

I'm sorry I haven't posted. First excuse; having my sister around is a lot more fun than posting.

Second excuse; Chemo #7 has got me a little under the weather. I have new anti-nausea medication. (The doctor said if I was worried about ativan habituation, take a half a pill at night. But he was clearly not worried.) And I'm sleeping a lot. I've tried to figure out something witty and insightful to say about sleeping but you know, in the end, it's just sleeping.

If Hodgkins is a marathon, I'm in the part of the marathon where you just sort of run.

My white blood count was 1.5 yesterday. I'm steady, at least.

Company

My sister is here! We spent the whole day in our nightgowns, just talking about everything. Smith has systematically pulled every toy out of the toy basket and brought them to Pat, one by one, as some sort of offering.

I feel good today, and we are going to a steak house for dinner. Pat lives in Las Cruces New Mexico where it is oddly difficult to find a good steak. And the Hyde Park Chop House, where we are going, has an extensive fish selection. I'm thinking about the macademia encrusted grouper.

I looked at my ativan supply and realized I have only gone through fifty since the prescription was issued on the third of December, so maybe I'm not as bad as I thought. I took one last night. (Damn the torpedoes.)

Off to get a little dressed up and go out on the town!

(Chemo #7 is on Thursday.)

Ativan

One of the drugs prescribed for me is ativan. It's a tranquilizer like valium and it reduces nausea. When I was in college, and I was an anxious and depressed wreck, I desperately wanted something to help me sleep. I used to lie there, insomniac, and fantasize about tranquiliers but this is the first time in my life I've ever been prescribed one. When I first got the prescription, I took maybe five ativan during a two week chemo cycle. I could never feel the tranquilizing effects of it. Like valium, I suspect, it just cuts off the highs and lows. But it did quell nausea.

By now, the chemo effects have gotten much more pronounced and I would say I take an ativan almost every day, usually a bedtime. I have this neuropathy (nerve pain in my hands, arms and shoulders) and while the ativan doesn't have any effect on the pain, it does reduce my anxiety about the pain. I take a couple of ibuprofen as well, and that seems to allow me to sleep. But I'm worried about becoming dependent on the ativan. Saturday I felt pretty good and didn't take an ativan that night. I slept really badly although I don't know if it was because I hadn't taken the ativan or if it was just one of those nights. Sunday was not a good day, either physically or emotionally. Last night, my arms were aching so I took the ibuprofen and the ativan. I slept and this morning I feel much, much better.

I did what I always do. I went searching the web. I found one site that said habituation can develop in just 2 to 4 weeks of regular use. So I don't know what to do. Maybe tonight, if I'm having pain, I'll try half an ativan and I'll ask Dr. Schnurr about it on Thursday.

I feel like one of those Hollywood people who explain that they are checking into Betty Ford because they developed an addiction to pain medication after an injury. Picture me hear standing in front a microphone, taking responsibility for my problem and all that rot, okay?

My sister is flying in today from New Mexico to spend a week with me. I can't wait.

Workshops

I'm team teaching a workshop (it meets five Saturdays) with the poet Carolyne Wright and this morning was the first class. It was delightful to be teaching again. Particularly delightful to be teaching in an environment where I didn't have to grade papers. Carolyne was generous enough to let me teach this class, and to teach the next. I'll have chemo #7 on Thursday and so won't be so sharp next Saturday.

The students are primarily interested in memoir and poetry. So I taught a memoir exercise and then did an exercise on narrative. Carolyne is a poet who's book Seasons of Mangoes and BrainFire won a number of prizes. She's got some lovely poems in Ploughshares. I only hope I have enough of a brain next Saturday to be able to learn something from her.

Perturbed

It was just announced that Arlen Spector has Hodgkins Lymphoma. I am pissed. I have no desire to share anything, even a disease, with that man.

Alternate Maureen

I can't remember when I first started seeing articles about Cindy Sherman but I was living in New York. She's a photographer who creates little photographic fragments of narrative using herself as a model with props, make-up and wigs. Her early images often trade on stock figures but her later images become less tied to 'the bad girl' or 'the jaded woman in her forties' or 'the bird in the gilded cage.' In my adventures with wigs, I have been thinking lately about Cindy Sherman and her costumes and her wigs and her pots of paint.

Yesterday I went shopping, wearing my new, favorite wig. I could never have the haircut that I have with this wig because the wig is straight and my hair is not. Kristi, who usually cuts my own unruly hair every three or four months or so, trimmed the wig for me and the cut is the kind that in someone's hair would need some systematic maintenance. It is precise and would grow out easily. I am not much into systematic maintenance. But the result is sleek and attractive and since wigs don't grow out, it will remain that way. Since the wig does not look like a wig, the result signals that I am a person who spends a serious amount of money on hair up-keep. And oddly enough, in Nordstrom's department, I attracted the sales attention of a woman who is, well, high maintenance.

I bought a jacket and pants, and the sales girl promised to call me when they 'got something new in I'd like.' I bought some shoes at another store (which I genuinely needed). They are all an 'outfit' I can wear this Saturday when I teach. (Cleveland State hosts a series of weekend workshops called Imagination II and I'm team teaching one of them.) I was emboldened by thinking of Cindy Sherman, of constructing a slightly different version of myself. In make-up, expensive clothes and the wig, Bob and I went and got a bite to eat last night and then went to Borders. I was looking at cookbooks when he found what he wanted and came to find me, and he walked past me before he realized it was me.

It made us both laugh.

So it's not as if you wouldn't recognize me but scanning a crowd for me, you might glance past the first time. It's like alternate reality. It's the Alternate Maureen.

Wig Etiquette

I bought a second wig (straight hair!) and now wear it quite a bit. It's comfortable and I feel flattered in it. Bob likes my wigs so I wear one if we go out and last night we went to our local sandwich shop--Michael's, which is run by neighbors. Leeanne saw us sitting and then I could see her recognize me. It's amazing what a change a wig makes because it doesn't quite match your own growth and hairline. We mostly don't consciously register that people's hair grows in a left or right spiral, and bangs can hide a widow's peak but a wig is sometimes more different than a cut or coloring your hair.

"You've done something with your hair," she said.

"It's a wig," I said. "I've got a really mild form of cancer and I'm bald."

She was startled, of course. Since the last time I saw her, she had broken her wrist badly so we discussed our medical woes and I admired her zippered cast. Afterwards, I wondered if I wanted to have told her I was wearing the wig. My mother never would have. My mother never told most people that she and my father had split up, despite the fact that she hosted bridge games and had people over and he wasn't there. People would say, "How's Marty?" and she would tell them he was fine, or that he was in the hospital again (he had a heart attack a couple of years after they separated and had heart disease for years after until it finally killed him.) I don't know if she thought that the fact they were still technically married meant she didn't have to say anything. Or shouldn't. But mostly she just believed that private matters were private matters.

Obviously, I'm not like that.

But I don't know that I needed to blurt out to Leeanne that I was wearing a wig. Maybe I just should have said, "Thanks! No gray!" Part of it, I think, is that I'm so aware it's a wig. It's weird and kind of fun and I don't know exactly what to make of the whole wig thing. But the wig thing is growing on me and I do like how convenient it is. It's easier to put make-up on without hair, too, no worry about getting the foundation in my hair or getting all the way up to the hairline. So I often wear a little make-up as well. (I'm getting quite glam.)

I can't figure out if the wig is flying under false pretenses. It's not like I think anyone who is wearing a wig should announce it. If the wig is a fashion accessory, well, it would be like announcing my jacket. (Not that some people don't announce their clothes. Particularly on television. 'This is Prada.' 'This is Stella McCartney.') On the other hand, I don't think someone who has a glass eye should be required to announce it, either.

Why am I uncomfortable then? I feel bad when people find out I have Hodgkins and say, 'I didn't know!' 'I just found out!' I feel as if I neglected to tell them. But I hate to tell people, too, and overcompensate a bit by telling too much perhaps. I would like to come to some sort of comfort level about the whole thing but with luck, I'll be cured before I do.

I <3 Bob

Happy Valentines Day Bob, and thanks for the Nina Simone cd singing even as I type this.

Junkie

When I was in college I took psych and abnormal psych. This was back in the late seventies, so were still discussing Freud. (Do they discuss Freud anymore except for his historical value?) One of the psychological explanations for why people become junkies was that it took someone who had a problem-filled, complicated life, and simplified everything down to one all-important problem: 'Where do I get my next fix?' I always had trouble with that. The lives of alcoholics and drug addicts didn't seem to me to have traded a whole bunch of problems for one problem, but instead to have traded a whole bunch of problems for a whole bunch of other problems. But there is a way in which maybe an addiction organizes their life.

Cancer organizes my life. Christopher Davis had a link to counting spoons that illustrates an aspect of that (although I have a lot more energy than Christine Miserandino.) I started thinking about the way cancer organizes my life and how there are aspects of that I haven't worked through when Adam sent me a wonderful email about the blog. I emailed him back and told him jokingly that I didn't know what I was going to do in May when the cancer was gone.

Well I do know what I'm going to do, I'm doing some writing related traveling, but that's beside the point. When I finish my chemo, I'll still feel puny for awhile, but I'll have to start re-organizing my life. And while there are a lot of disadvantages to Hodgkins, there are a lot of advantages, too. My life is so important! Life and death decisions are being made ever couple of weeks! Everything has this lurid dramatic light on it! I have cancer! People are super nice to me! I get to pick the restaurants! I have control of the remote!

It gives me a little empathy for the people who develop Factitious Disorders. Factitious Disorder is a psychiatric disorder where people feign illness by drinking household cleaners, giving themselves infected abscesses, and a whole host of other ruses. Turns out there is are people who have claimed that their wife and unborn child had been killed in a car accident to get into psychiatric hospitals. People who have something called Munchausen by Internet where they join internet support groups for illnesses and problems they don't have.

I hope to give it all up as soon as possible. The nausea and the fatigue, I'll be able to give that up. But it's going to be hard to let go of the feeling that I should somehow be privileged. And that all you readers should be paying attention to whether or not I took a nap today. (The answer? Not yet, it's only 9:30 in the morning. But I'll keep you posted.)

I still want you all to keep reading. Just don't cut me any slack, okay?

Birthday

Woke up to a bright red bag full of jazz and silk. Bob got me a beautiful huge scarf, deep brown with blue and green butterflies like those iridescent rain forest butterflies. I'm not much of a butterfly person, but this is gorgeous. And of course, butterflies are such a nice symbol of rebirth through change. The Coleman Hawkins cd is playing on the stereo right now, and after that will be Billie Holliday.

I went to bed at 8:30 yesterday and I'm feeling pretty good today, so I may have to give the new scarf a spin and go out and about.

The Landscape

When I first found out I had Hodgkins, I felt weird saying I was sick because of course, I wasn't in the sense of 'I feel sick.' I couldn't imagine really what it would be like. Everything I read said that compared to most cancers, Hodgkins is a breeze (which it is.)

All that said, at a certain point when I've had, say, the flu, there comes a time where I have no real vivid memory of what it felt like to be well. On day two of the stomach flu, in the search of not being nauseated, the ideal physical state seems to be 'able to sleep' and the whole concept of 'able to drive a car' is abstract.

I've been in this long enough that discomfort has become steady state. Mostly very mild discomfort. But I am in the land of the sick. I pass for well some of the time, saving energy points like those Top Value Stamps my mother used to collect at the grocery and gas station and turn in at the Top Value store for things like a lamp for the kitchen. But my landscape has shrunk. It is all very familiar now, and so harder to report back because it is harder to recognize what would be interesting to people other than Heather and Sarah. I was getting my treatment yesterday, realizing as they hung the fourth bag, that I get something like two litres of fluid during a chemo treatment. Yesterday I made the mistake of bring a litre of seltzer to drink. Hooked up to an IV for four hours, this can be a strategic error, although the IVs are on wheels and when I got desperate enough, I went for a walk with my bags hanging off my arm and hit the bathroom.

I'm still looking for interesting stuff to report back. My blog is my protection, and I still look for those moments where it turns me into an outsider.

Things Went Good on Chemo #6

My white blood count has drifted back down. It's at 1.6, down from the last treatment's 2.4, but still above the 1.5 cutoff. But the last drug I get, the D.T.I.C., didn't burn this time. (I get it more diluted now.) But I'm wicked tired today, that fatigue thing. I foresee a day of bad telelvision and a nap. Tough life, I know.

I can't help thinking that if I was getting radiation, I would be three-quarters of the way through instead of halfway. But I'll grit my teeth and stay the course unless the doctor feels that radiation is the better option.

I've started wearing my wig in public a lot. Not the fun one, but the innocuous one which makes me look a little frumpy and middle-aged but normal. I don't like it. I don't like being frumpy and middle-aged looking. I can stand middle-aged, it's the frumpy that bothers me. But I do like not being taken for the cancer lady or the dyke. As best I can guess, I'll have hair again in September.

It's so funny, the hair thing bothered me when it was falling out because it looked so utterly horrible--long strands of black-gray hair covering a pale scalp. But I didn't mind once it was shaved. It's only now that I become more and more self-concious about it and the whole hat and wig routine. I'm thinking about getting another wig. One that is less an approximation of my hair (the approximations tend to be frumpy because I have short curly hair, and most short curly-haired wigs approximate the look of the woman who 'gets her hair done once a week.' When I got fitted, one of the things the wig lady and I looked for is a style that didn't look like the kind most often picked by sixty-year olds.) Wigs are expensive, though, and this one wouldn't be covered by insurance.

The other thing is that my doctor said it was okay if I dieted. So I will. Not with any real intense seriousness, mind you, but it's easy to gain weight when someone tells me to coddle myself. It's also easy to gain weight when I am either tired or hurting--comfort food. Right now the 14 day cycle works that I have treatment on day 1, feel toxic and weird and tired for five days, then the pain in my arms hits for another five days, and then I feel pretty good, if a bit wiped out. Then the next treatment. Oddly enough, the predictability helps. The illusion of control.

Sorry I'm whining these days. Maybe it's time for more wig pictures.

Everybody Looks Good in a Wig

The Half Way Point

Tomorrow is chemo #6. Bob would like to celebrate, but I'm not really much of a party girl after chemo. But it is a milestone of some sort, right? Sunday is my birthday. I'm 46. The chemo cycle guarantees that while I won't feel bad, I won't have an appetite and I'll be easily fatigued. So we'll put off the celebration for a week or something. I am a fiend for birthday cake and ice cream. It is one of my favorite foods in the entire world. So I am feeling the deprivation keenly.

I had a couple of things planned for January and Feburary that Hodgkins managed to derail, but mostly I've been able to cope by just juggling. But Bob has suggested a couple of guidelines that seem to really work. His sharpest observation was that I'm really only good for one thing a day. So the days of scheduling a dentist appointment in the morning, work all afternoon, go out to dinner with friends in the evening, are suspended until summer. What this means in practice are that Sunday both of my writer's groups are meeting and I may end up attending neither.

I haven't been posting as much lately. Chemo has finally caught up with me and I'm listless and drained. Chemo brain, I think. And the novelty of the situation is gone. It has helped to go through this thinking, that will be good for the blog. It has given me the eye of an observer. I read a memoir by a Pulitzer winning photographer (whose name I have long forgotten) about when he was in Vietnam. He was with a patrol and they were being fired on, and while they were running across a clearing, one of the soldiers near him was shot. As the kid fell, the photographer thought about how awful it was that the kid was out there without protection. As if the Nikon camera around the photographer's neck was some sort of bulletproof shield. This blog is my Nikon, my bulletproof shield.

Hopefully, by the time the truth of the situation hits me, I'll have a clean PET Scan or something and I can look back and think, boy, was I deluded. Lucky it all worked out.

Today is a day to get a bunch of freelance work done before better living through chemistry tomorrow.

My Collection!

I talked to Gavin Grant on the phone today. Gavin Grant and Kelly Link, besides sending me wigs and chocolate, edit Small Beer Press. They're publishing my collection of short stories, Mothers and Other Monsters, in June. So Gavin and I talked about what order the stories go in and we agreed Ancestor Money should be first. And he thought the two big long ones, "The Cost To Be Wise" and "Nekropolis" should be in the middle. It's actually fun to try to decide what order they should go in.

Here's a list of the stories, but the order isn't set yet.

Ancestor Money
Interview: On Any Given Day
Lincoln Train
In the Air
Oversite
Cost To Be Wise
Nekropolis
Wicked
Presence
The Wicked Stepmother
The Beast
Laika Comes Back Safe
Frankenstein’s Daughter

A couple of them are on line. Think of it as the equivalent of a free sample.

Fun with Hair

Kelly Link sent me a couple of wigs. Bob and I couldn't decide who looked better in this one.

I think I've found a new look.

The Benefits of Cancer

Tonight we had dinner with my college roommate and her husband and their teenaged daughter. There's no reason why we don't get together, except that Donna and Dave have a life, and we have a life and somehow, we just haven't. But now I'm sick and Dave has had a bit of a health problem, so somehow that provided the impetus to all get together.

How easy it was to feel as if I were nineteen again, and how easy to be with people I've known so long. Of course, we said all the usual things about how we shouldn't have waited so long to get together. And we shouldn't. But at least we finally did. And Dave and I even had one of those intense political discussions we used to have in college. We used to have them at two in the morning instead of ten at night, but at my age, ten at night can feel like two in the morning.

Eccentricity

Spend enough time by yourself, unacountable to anyone for hours at a time, and you'll develop odd habits. In my cause, I think it happens pretty quickly. I'm sitting around in my bathrobe (because I can.)

Today's lunch? Vicodin and Stouffer's corn souffle.

Not only did it seem like a great idea at 10:00 AM, but here I am an hour later thinking, 'That was pretty good.' Of course, that might be the vicodin.

On the other hand, I really need to get some of my freelance stuff done. It will be intresting to see how the vicodin affects that.

Brave

You ever notice how people who have cancer are all 'brave'? It's like your cells metastasize and suddenly, you acquire dignity. Newspaper headlines refer to 'Brave 11 Year Old with Cancer'. What did he do that was so brave? I mean, I didn't do anything brave to end up with this. And what would he have to do, our metaphorical 11 year old, to be declared Not Brave?

One of my students from a few years ago, a guy named G, contacted me a couple of days ago. When he heard about the Hodgkins, he suggested that I contact the Make a Wish Foundation and get something good out of this deal. He recommended a pony.

That's when I realized, I don't want to be brave. Forget the pony, I want a Porsche.

First, from now on, I'm going to whine. Cancer Sucks. It's boring, too. And since I have it, everybody has to sit around nodding supportively while I whine and cry. In fact, I expect people to tiptoe around my feelings, careful not to say or do something that will 'upset' me. Although I'm going to get upset anyway, so you're all screwed.

Second, I expect to be catered to. From now on, we watch only TV shows I want to watch. Eat at only my favorite restaurants. See only movies I want to see. And I get to buy stuff. Lots of stuff.

Third, I expect to contribute nothing. Not only am I not going to gamely struggle to make everything as normal as possible, I'm going to be an utter black hole of resources. Im going to be costly, financially and emotionally.

I refuse to bend to the stereotype of the Brave Cancer Patient. I vow that when this is all over, everybody will be forced to acknowledge, I wasn't like all those cliche people. I was myself.

Of course, in May, when my PET Scan is clean, there could be hell to pay for all of this.

Micky D's

Beef doesn't taste right to me anymore. It has a bitter, sort of earthy taste. I crave it though--not as it tastes today but as it used to taste. I know that in a few months, it will taste normal again. But today I got a strong urge to try a McDonalds cheeseburger. So I did. I mean, I figured, they're cheap, so if I don't like it, I can get something else. And I can always eat the fries. McDonalds makes very good fries.

McDonalds makes good fries because it turns out that making good fries is chemistry and the issues in question are the water content of the potato and the heat of the oil. If the water content of the potato is just right, the outside of the fry with crisp and the inside will get fluffy and white. Too much water, and the insides steam and you get a fried boiled potato. The whole affair gets greasy and nasty, especially once they aren't hot. Unfortunately, potatoes are organic and their water content is determined by where and how they grow and what the weather and temperature is. So McDonalds has developed a very sophisticated system by which farmers grow specific types of potatoes which are then laid out in warehouses and monitored until they have dehydrated a bit to the correct percentage of water. I'm not saying that there aren't better fries than McDonalds fries, and McDonalds fries do suffer a bit from employee error--they can be undercooked, overcooked, or left to stand too long, despite those deep fryers with the loud beeping alarms. After all, who hasn't been in a fast food place where the deep fryer is loudly announcing that something is done, and nobody seems to fish the basket out of the oil for long, long beeping minutes. But McDonalds french fries are a pretty good fry benchmark. My taste for potatoes remains pretty much unchanged.

I could risk a buck on a cheeseburger then, knowing that I could always console myself with the fries. I stood for a moment, contemplating ordering a Big Mac. When I lived in New York City and never ate fast food, Big Macs were a secret vice of mine. I came back to Ohio craving them. They're awful--the food equivalent of drugs, nothing but fat and salt and a bit of sugar. Nutritional sin, with a bit of shredded lettuce, like a stripper in a G string. But I wasn't all that hungry and besides, I was really aware that I might take a bite of the thing and want to spit it out. Best, I thought, to start modest.

I bought my cheeseburger, wrapped in its yellow Micky D wrapper and took it over to the table and unwrapped it. I busied myself salting fries and getting the catsup right to dip the fries. Ate a couple of fries. The cheeseburger sat there in its soft, slightly steamed bun, the meat pretty much hidden by the slice of processed cheese food, all the colors as primary as a Fisher Price toy. I tasted it.

It tasted fine.

Which just proves what I have always suspected. I'm not a hamburger person. I never make them at home. I rarely order them out. But I like McDonalds burgers. Why? Because there is so little meat, they don't taste like beef. I will now burn in hell because of the dreadful lack of standards in the meat processing industry and the three dollars and change I have contributed to the agri-industrial complex (read Fast Food Nation for more on this issue.) I swear, for the next week, all my meat will be humanely raised. But I have to admit, I liked my McDonalds cheeseburger. And the fries were good, too.

Keeping Busy

It's very easy to make Hodgkins my full time job--but in fact, it's only a part time job. Yesterday I had a conference call for this freelance gig I'm working on, and we spent a very intense two hours going over stuff. (I am so not a team player. Being a novelist has made me cranky and used to my solitude. But they put up with me.) After I hung up the phone, I was feeling good and sharp, and for the first time since Thursday, I was hungry. Bob and I went out and got Japanese food and I made him stop for ice cream. Okay, it was easy to make him stop, but I did have to make him.

Came home, ate my ice cream, and was suddenly so deeply tired I staggered when I walked. So I went to bed.

Jeanette, the oncology nurse, says 'Go with the flow,' and since Adam is nineteen and my job is part time, I can. But balance is really hard to learn. I'm inherently lazy. Left to my own devices I would read books, watch TV, play solitaire, eat...anything but tackle real work. If I do that, I get blah and unhappy. I'm trying to get out and do, but when the fatigue hits, it's like a fever coming on. I'm fine and then five minutes later I'm punch drunk. And every two weeks, the equation changes.

Of course, the real answer to this is...what would the miniature dachshund do? She'd insist that the world revolve around her.

Poor Bob.

Shelly and Smith