Chemo #11, Redux

It's done! It's done!

Long day in the chair. My appointment was early, 11:30, and my veins are so fried, that the two hour procedure was finished at a little after six. But the nurses were patient and wonderful and it wasn't painful or particularly uncomfortable, but it was...long.

Happy to be home.

ONE LEFT!

Vanity

Yesterday, I stayed home all day, unwilling even to go to the mailbox at the street. Today I felt that I looked better, and there were things that couldn't be put off any longer. The dog's thyroid pills, an overdue book at the library (a 7 day book overdue @ $0.25 a day.) So I went out, although I'm still swollen around one eye and my skin is blotchy and strangely pink. My wig makes me itch. But, I told myself, unless someone really looked at me, it wasn't obvious.

The truth is, I don't know what I look like to someone else. In the mirror, I think I look diseased, although I am aware that it is possible that I look pretty normal to anyone else. Whether it's true or not, the result is that I did my round of errands today as an ugly woman. And it was interesting.

I think of myself as a reasonable looking person. Attractive, not head-turning. I've had my issues with weight and attractiveness. But when I go out, I don't think people are noticing me. There are people who are ugly. Someone who has lost part of their jaw to cancer, for example. Or who has been burned. You can argue with me and say these people are not ugly, but their experience, I suspect, will be that people stare, children ask questions. In the last couple of days I have wandered in that direction myself. Yesterday I didn't go out at all. A good friend called in the afternoon and kept me on the phone for a couple of hours, saving me from one of the most interminable days of my life. I couldn't get out of my own head--my discomfort, my itching, my eye swollen half shut making reading a real pain.

I found today that as I did my errands I kept changing my strategy, as it were. First at the library, the librarian knows me and knows I have Hodgkins so I just told her. I have this weird skin infection. She said she could see how I was still a little swollen around one eye. One strategy, although I wasn't thinking of it that way. Explain right away. I look like this because I'm ill.

The next place was Petsmart, where Smith needed to be dropped off to be completely shampooed of eau de raccoon morte. I was chatty and right out there. Hey, nothing wrong with me. You may be a twenty-something kid with perfect skin and I may look odd, red, blotchy, swollen, but by God nothing going on here. Again, I wasn't thinking about it as a strategy. I just did. The kid who took Smith seemed a little unwilling to actually look at me when he talked to me, but you know, some people don't make eye contact. He works with dogs.

At the vet's, where I went to pick up dog meds, I left my sunglasses on and explained, laughing, that I had an infection. One of the vet techs laughed in understanding (they know me, I pick up dog meds once a month.) She had been asked that morning when she was due. She's not pregnant, or to my eye, particularly fat.

By the time I got to the grocery, though, I dreaded seeing someone I know. Again, I know, at least by sight, a lot of people at the grocery. I found myself thinking I had gone a bridge too far, confidence wise. And I slunk around the store, my shoulders hiked a little, thinking, 'don't look at me. don't look at me.' I avoided the wine department, where they know me because I buy a case of Dubonnet wine for my mother ever six weeks or so. And the same guy kept appearing in every aisle where I went, with his cart and his baby. He was inept, by which I mean he seemed awkward with the baby seat on the cart, and clearly didn't know where things were in the store--you know, when you shop the same store again and again, you know where the pasta is, that the coffee is in the next aisle. He backtracked and stopped with his cart in the middle of the aisle, fiddling with list and baby. Normally he'd have had my sympathy, but today, everytime I turned my cart down an aisle and there he was, he would glance up and I'd think, 'don't look at me.'

So I got flustered, and had to backtrack, which was how I knew he was confused.

So strange. The way I was so worried. The way my confidence seemed to go so far and then collapse. I wanted a hood, a veil, a mask. And yet now, looking in the mirror, I know that the only thing that the guy with the baby was likely to be thinking was, 'How come every aisle I turn into, that woman is there?'

My confidence came and went, my self-conciousness never left me. How hard it would be to have to do this every day, if I were scarred, say.

St. Anthony's Fire

Erysipelas, actually. I have a strep infection in the skin of my face. So no chemo #11 yet.

It's one of those immuno-compromised things. Old people, people with chemo, alcoholics and AIDS patients get it. The left side of my face is swollen and red. I have penicillin capsules, and if those don't have a pretty dramatic effect by tomorrow, I'll go into the hospital for 48 hours to have an IV drip. It's an old disease, actually. Medievil peasant kind of disease, when it was called St. Anthony's Fire. Needless to say I would be tons happier without it.

Mostly I'm unhappy because until it is under control, no chemo. I was two weeks away from my last chemo and now that's receeding. I'm tentatively scheduled for chemo on Thursday. Pray to St. Anthony, I guess.

Nickle & Dimed

Grump.

Tomorrow is chemo #11. First a consult with Dr. Schnur, and then the usual. But I'm actually looking forward to chemo. It could help things immensely about now.

Wednesday or so I got hives on my face. Thursday night, Smith, the Golden Retreiver found a dead raccoon in the culvert behind our house. Friday morning, I bathed the dog and then when out to the culvert. I planned to shovel the dead raccoon into a garbage bag and throw it out, but dead raccoon was decaying and wet. So, as Bob had suggested, I buried it in situ. And then, to keep the dogs from digging it our and rolling in eau de raccoon mort, I built a little cairn of heavy rocks.

My hives continued to get worse.

By this morning I suspected that the hives were not, in fact, hives, but poison ivy, probably from the dog sneaking down into the culvert to investigate the dead raccoon. (She has a terrible conscience, so she has been lurking around the culvert for a couple of days, I suspect making deeper and deeper forays down the culvert slope, but fully aware she was Out of The Yard and would be Bad Dogged if caught. But the weeds start pretty far before the culvert. And it has been very warm the last couple of weeks and things a leafing and budding.) So I have a pretty horendous case of poison ivy covering half my face.

And today it snowed five inches.

So I am fat, bald, swollen and housebound.

The good news? If it is poison ivy, the huge quantities of steroids I get will immediately stop the rash in its tracks. And the hormone replacement is working. So I actually feel pretty good, if itchy. And Bob went out to get dinner and has been thoughtful and huggy.

Wait, This is the Wrong Script!

I tend to think of myself as the plucky girl in this little personal drama of mine, the one that is a stand in for the audience.

But today I’ve developed a weird rash on my jaw. It’s like hives. It itches. It’s annoying. Today I am the dippy girl who is oblivious to the creeping horror until her flesh has turned green or erupted in scales or boils, who clutches her face and shrieks, “Oh my God! What’s happening to me! Help me!” Then she turns into a puddle of goo or a pod or gets eaten while the protagonists of the horror movie watch, well, in horror.

Instead of turning into a puddle of goo, I’ll just take a benadryl, but still, you get what I mean.

This is especially annoying because in some portion of headspace, I keep forgetting that I have three more weeks of treatment. I’ve moved on. I’m planning my summer. (Two writing workshops, running a six week playwriting workshop with a playwright, going to Wiscon, maybe even working on a novel or something.) The summer is the after lymphoma time. It is not the still-have-weird-chemicals-in-my-system time. Bob and I are planning a summer of healthy foods and salads. I’ve been cooking this week. Today I met a guy (the playwright in fact) who is interviewing me for a local magazine about Mothers & Other Monsters. We talked about the book, the workshop, his play coming up, his last play, about art, and theater, and the pope. It was great.

It was not the script for the dippy girl. It was the script for after-this-is-over woman. I really protest being dragged back into weird health drama. Particularly since two benadryl work on my like a Mickey Finn.

Perks

I went to the ob/gyn today because I'm having hot flashes so much. The cure for hot flashes is estrogen replacement, but long term studies have shown that estrogen replacement increases the risk of stroke in women. In any single woman, the risk is negligible (unless you smoke, which I don't) but across a study of a thousands of women, it was significant enough that they stopped the study. But I'm miserable. Twelve to fifteen times a day I suddenly start sweating and feel sick to my stomach and hot.

I fully expected to have to present a case for estrogen replacement. (I've tried soy, and I've exercised, which makes me feel better in general, but whenever I start exercising I have a hot flash.)

My ob/gyn knows I have cancer because Cleveland Clinic uses electronic and paper charts. (My chart is now a couple of inches thick, after years of being thin.) I walked out with a prescription. I explained to her that I wanted to get through all the adverse affects of chemo and then get off the estrogen, since menopause is something that happens to women. Sure, she said. I almost said that menopause is natural, but then, malaria is natural, but I don't want it. But I still plan to get off the estrogen eventually. But the thought of not having hot flashes made me feel as if I was walking on air.

When you're a cancer patient, people give you all sorts of drugs, just for the asking. It's weird. Or maybe doctors just pay more attention to patients now. Or maybe I'm just older and my expectations are more reasonable. I dunno. But it's nice not to be expected to tough things out.

I <3 Cleveland Clinic.

The Latest Cover!

70# Finch Opaque Cream White Smooth Paper

Gavin sent me this, the printer's note, on the collection. I think it reads like found poetry:



Mothers & Other Monsters

Stories

Maureen F. McHugh

This is number of one hundred copies which are signed and hand-numbered by the author and accompanied by an exclusive chapbook of five poems and includes a tipped-in copy of the trade edition cover image of Judith Anderson photographed in the role of Medea by Erwin Blumenfeld.

Printed in May 2005 by Thomson-Shore of Dexter, MI, on 70# Finch Opaque Cream White Smooth paper, with 80# Oatmeal Rainbow Endpapers, Smyth Sewn in Pearl Linen Cloth, with a ribbon to keep your place.

On Being a Less Than Good Host

Recovering nicely from yesterday, although still a bit tired. It's ironic that now, after the disease appears to be gone, I will continue to feel worse and worse through two more treatments. But it beats relapse.

I'm going to New Mexico in May for the Rio Hondo writer's workshop (did I mention that? Maybe many times? I clutch that fact as I go through all these treatments.) Bob is a little concerned about it, because I will not exactly be well when I get there. The place where we stay in Taos is at 10,000 feet, and although my red blood count is good, it isn't normal. (When I get the print out of my blood counts, it's always amusing. Pamela or Jeanette or Tammy hands it to me and says, 'Your counts look good!' and I scan them. Over half of them are flagged as 'abnormal' but by chemo standards, they're great!)

This may mean that I am dependent on others for things like getting my suitcase upstairs, and more importantly, that I might not be able to pull my weight at the workshop. In the morning we critique each other's stories, and in the afternoon, we hike or read or socialize, and someone or a couple of someones make dinner. The dinners are wonderful, and I've always been involved in cooking, as well as doing some dishes. But this year, I don't know how well I'll cope. I'm not sure what the alltitude will do, but I suspect I will find it tiring--I do in years when my health is good. Added to that, Walter Jon Williams, the guy who founded the workshop and who is a cooking god, had his appendix rupture a few weeks ago. He's doing really well for someone who spent a week in the hospital and had abdominal drains. He still plans to be there, but he, too, is not sure how much he can do.

And we're the hosts.

But selfishly, I'm going anyway. If we have to order pizza every night, I don't care. If all I can do is sit in a chair and look at the extraordinary blue of a New Mexico sky, that's what I'll do. Next year, I'll make it up to all of the attendees. I'll cook, I'll wash dishes, I'll do laundry. But I love those mountains and this year especially I want to be in them.

Me & Martin Luther

This morning has been given over to one of the adverse affects of chemo therapy. The good news is that it is an affliction I share with Martin Luther. And that he attributed to much of his contemplation, which led to the reformation.

None the less, I am glad to have much better medical options than he did. Even if the result is that I haven't had any profound thoughts.

Chemo #10

Done, two more to go.

It wasn't bad. Blood counts are great. Just wish I could sleep.

Bewigged, Bothered and Bewildered

Well, really not bothered or bewildered. But I have pretty much abandoned hats and scarves in public and mostly wear my wig. It turns out that a wig is like most other pieces of clothing. It takes a little getting used to (and like a toddler taking off her shoes at every opportunity, I used to take it off immediately upon getting home.) And that once I did get used to it, I pretty much don't think about it that much. Now I can wear it for hours. Although I still don't wear it much around the house but that's only because I'm always asking Bob, "Is it hot in here or is it just me?" and it's easy to cool myself down a bit by going bare-headed.

When I was a teenager, back in the 70's, my mother had a wig. Wigs were big at that time. She had a styrofoam head and the wig looked a lot like her regular hair. The idea was that on bad hair days she could wear the wig. My mother, like many women her age, got her hair done once a week at the beauty parlor, a rather boring place that stank of the solution used for permanents. In the sixties and early seventies, I had to go with her. We went every Saturday morning. It was full of sixties looking art of women with swoopy hairstyles but most of the women there were doing the shampoo, set and comb out. The beauty salon my mother frequented (she had a standing appointment) was actually in a department store called McAlpins. That was back when department stores had appliances and books, stationary, cards, luggage and a restaurant where ladies who lunched could get soup and a sandwich. I was allowed, while my mother had her appointment, to go watch cartoons in the appliance department on the televisions. For my mother, the problem with wearing a wig to work on, say, a Wednesday, was that is so crushed her hair that she had to wear it Thursday and Friday, too. She wore it a few times and then it mostly sat on its blockhead in her closet, where on the rare occasion I would open her closet door, it would weird me out.

My two wigs also sit on styrofoam heads with the same sort of abstract features. I keep them in my office because the only place to keep them in my bedroom is on my dresser, where they still weird me out. (They're reflected in the mirror so if I glance up from reading there is a brief instant where there are four heads on the dresser. And if I've taken off my glasses, say, because it's the middle of the night and I'm going to the bathroom, they can be particularly disconcerting.)

I really like one of my wigs. It has straight hair, something I've never had in my life. (My sister and my mother straightened my hair in the eighth grade with something called a Toni home straightening kit--straightening hair by actually giving me a permanent without rollers--but my hair never quite straightened. It came fairly close, but it also fried. I didn't care, I was so glad.) I can't really duplicate the style of the wig with my own hair, at least not without paying enormous amounts of money. I love how easy the wig is. I pull it onto my head like a bathing cap, fluff the hair a bit with my fingers, and I have a rather expensive haircut, instantly. And no gray. I keep saying I'm going to wear it even when my hair grows back in but I suspect wearing a wig with hair is a different prospect than wearing it without.

I'm told that I would be surprised if I knew how many people actually wore wigs. Besides Cher. I find myself looking at people thinking...is that a wig? But the only place I've ever been sure someone was wearing a wig is either at the wig store or at the oncology office. The only reason people can tell I'm wearing a wig, I'm told, is because they know I have no hair. I still have eyebrows. Thin ones, but eyebrows. The nice thing about a wig is that I can pass. You know, for someone not from Planet Cancer.

I should have the equivalent of a crew cut by September. Until then, I'll have straight hair.

Sweet Sweet

Barth Anderson mentioned in his blog that mangoes are good right now. I have been craving fruit (usually I crave things that are bad for me, so this is a good thing.) On Wednesday I bought a mango at the grocery. They're so heavy for their size, a thing in your hand. I brought it home, cut around it in quarters and used my thumb to peel the flesh off the pit in the center. It was so juicy that the juice ran down my chin and my forearm as I stood at the sink eating it.

It was one of those experiences where you forget everything but what you are doing and the experience absorbs you completely. Heavy, sensual and rich. It was so much about life in some way I can't explain.

Thanks, Barth.

Drug Crazed

Last week when I had chemo I read a novel by Martin Cruz Smith. Wolves Eat Dogs, if you want to know which one. It was excellent for chemo, a murder mystery, police procedural set in Moscow and Chernobyl. I always get paperwork when I have chemo--a summary of my chemo, my blood work, appointment reminders, all sorts of stuff.

The week of chemo, as I've mentioned before, is the week where I feel queasy. The second week of the cycle is neuropathy, or nerve pain week. Mostly I can keep it under control with Motrin, but there are usually two or three nights where I take a vicodin. Last night, I took the last vicodin and thought to myself that today I would get my prescription renewed. This morning, I realized that I had taken Wolves Eat Dogs back to the library. I don't know if you can see where this is going because you may not have my tendancy to use whatever is at hand--appointment reminders, summaries of treatments, prescriptions for controlled narcotics--as bookmarkers. Okay, you probably don't have my tendancy to do that. You're probably a grown-up.

What should I do? Call the doctor and tell him I left the script in a library book? I'm lying in bed thinking Vicodin is one of the most abused prescription drugs. Is Dr, Schnur, my own very good Dr. Schnur, who likes me, going to think I'm abusing prescriptions? And how is he going to feel about a vicodin prescription with his signature on it lying in wait for any drug abusing librarian or mystery reader to find? Didn't they notice it? The book was in the new book shelf, so if they didn't, has it already been checked out? Should I ask?

In any event, I dressed carefully to insure I looked like an upstanding citizen instead of like a member of the Osborne family and drove to the library (dutifully dropping off my copy of Gilead which isn't due for days yet, see, see, this is the kind of person I am, I read books about parsons and bring them back early!) For a couple of heartrending moments I couldn't find the book, but there it was, and still neatly tucked into it, my Vicodin prescription. I pocketed the script and sauntered out of the library as if nothing untoward had happened. Then I did four errands just to prove I was a responsible adult who could be counted on to maintain a normal suburban middle-class existence. Only one of those errands involved dropping off the prescription at the pharmacy.

One Person's Poison

A couple of weeks ago, walking down the hall of the assisted living where she lives, my mother reached over and in a manner archaically genteel, touched my husband's arm and said, "I know I should know you, but I can't remember your name."

"I'm Bob, Maureen's husband," he said, unflustered. He believes it is because he had just shaved off his beard but I know that sometimes, when I get to Grande Village where she lives, she doesn't recognize me right away. She'll be 90 in July.

Chemo makes me feel old. Not in the usual ways we mean when we say something makes us feel old. Not emotionally tired. Really old. I can't catch my breath, I fatigue easily. My digestion goes to hell and I take my Senecot to insure regularity. I ache. I can't think of what word I want. It's undoubtedly different in important ways from aging, but I think about being old in a different way. The breathing thing is creepy. It's enough to make me think more seriously about exercise and eating right.

But my mother did that. She is the middle of five siblings, and only she and her brother are left. Her brother is ten years younger than she is. My mother exercised and maintained her weight. I grew up with freshly prepared food and fresh vegetables when all my friends were growing up on minute rice and canned peas. Kids would come to our house and be astonished at the taste of green beans. She did all the right things. She has never had high blood pressure, cholesterol or blood sugar problems. But her she has dementia and her relentless good health means that at 89 she has no brain and a body that won't quit. She still knows me, even if it takes a minute, but she doesn't know my sister. Doesn't even remember that she has two daughters. She's not unhappy, although she does have a vague anxiety about things not being quite under control.

I've had a surprising number of conversations with people about suicide in the face of terminal illness or dementia. My sister and I joke about having a pact that neither of us will let the other get that way (a pact that favors her, I will point out, because I'm younger.) But the problem is twofold. One is timing. With dementia there will come a time when one is too...demented, too senile, to remember what the plans were. And the other is that thing about not poisoning the well. What do I owe my family? Certainly, when my mother was eighty and showing signs of dementia, she was still herself in ways that we could recognize and appreciate. We could still talk and be with her. Now there's no conversation.

I wrote a poem about it. Forgive me for putting it here, but I don't know another way to explain how she both is and is not my mother anymore.

Les Brown's Band of Renown

My mother is a pocket with a hole.
She loses nouns, whole decades, connections.
What is that? she says
and I say, truck? cloud? What do you need?
A quarter? Seven cents?

My mother is a ruined city.
My map of her, never complete, grows out of date.
That's Glenn Miller, I say.
Benny Goodman. Your favorite song is on.
Stardust. She smiles for me

but where the map says swing music
is an empty field. A few pale stones and grass
bending in the wind.
She danced with my father on the deck
of a paddle boat. Les Brown's Band of Renown.

A slim girl, motherless herself.
Auburn and white, she stood so straight.
I have a faded snapshot
of her memory. I could say, 'once you told me'
but who would I offer it to?

Even Troy, where no stone stands on stone,
is still a place. So you, my mother,
stranger to me.
Location and history and one breath
after another. Only air.

At some point does one go from being there for your family and being a burden? When are you poisoning the well? Terri Shaivo's case showed that one person's poison is another person's comfort. Who decides? My husband and I have both talked about how we don't want extraordinary measures. But when does ordinary become extraordinary?

Today the dogs and I went for a walk and we doubled the distance we've been going. It was 46 degrees F. and the sun was melting the four inches of snow we got this weekend. There was water everywhere but the miniature dachshund (who puts new meaning into the concept of hydrophobia) was so excited she padded through four inch puddles without a qualm. Since that's chest high on her, that's pretty astonishing. And even on the hill coming back to the house I didn't have any problem with breathlessness. That's good, since I plan to be in New Mexico in May. If I don't get some lung capacity before then I'm going to be at 10,000 feet sitting in a chair.

So I'll exercise and I'll eat my vegetables and see if I can lose ten pounds. I'll take deep breaths and be glad that my infirmity is temporary. I will revel in the ordinary, and deal with the extraordinary, as best I can, if and when it comes.

Experiments With Food

Yesterday, when I was at dim sum, I tried a dumpling that was pork filled (half the time I have no clue what I've ordered at dim sum so I eat a lot of things without quite knowing what to expect, like the cubes of what turned out to be mango jello, which were quite good.) For months I haven't been eating beef or pork because it tastes odd, but at dim sum yesterday, it all tasted good. Maybe because my chemo has changed and my toxic load is lower? I don't know.

Today, at the grocery, I bought a steak. Tonight, at dinner, I'm going to try it. I'll broil it and finish it with a little garlic butter and eat it with a big tossed salad on the side. I admit, my hopes are high.

How Are You?

When I see friends anymore, they ask me how I'm doing and then they laugh and say that, well, they feel as if they know how I'm doing because of my blog. I feel a little like a celebrity. (Oh, yeah, Jenn, I saw in the tabloids that you and Brad split. So sorry to hear that. But you looked great at the Oscars!)

The funny thing is how hard it is to be sick. To be tired or scared or want comfort. I tend, in my blog, to concentrate on interesting observations on life in the land of the sick, without dwelling too much on the rather quotidian stuff. It helps me to think about things like how my illness affects the landscape of my life--the way things felt so joyful this week, and what it means to be bald--rather than to talk about symptoms. It's much more fun to talk about how I have acquired the habit (which I see in guys who have shaved heads or who are bald) of rubbing the palm of my hand against my scalp. I do it sometimes when thinking.

But a lot of my every day life involves dealing with adverse affects. I am moving out of queasy week and into neuropathy week. I have hot flashes as much as a dozen times a day. The only way to stave off the hotflashes (which are much more annoying than just feeling really warm) is to stay constantly a little cold, so at night I have to sleep without quite enough cover if I plan on sleeping at all.

But the nice thing about the blog is that much of the time it makes me feel like a visitor here. I am Observing The Local Customs and Reporting Back. I'm a little homesick, guys--don't know what I've have done the last few months without your emails and phonecalls. It's been interesting but I've been here long enough that it's getting a bit familiar. Can't wait to be back this summer.