Friday, December 31, 2004

Chemo 3

Yesterday I wore my 'Fuck Cancer' hat to treatment.

Bob got it for me for Christmas. He found it on the web. A woman has a website called Deviant Goods--you can google her (because I'm too lazy to link.) She had a friend diagnosed with cancer and the friend found that the cancer hat market is pretty much saturated with pink and angels. Said friend was not a pink and angelic kind of person, and hence, Deviant Goods was born. She has two kinds of hand-knitted caps. One says 'Fuck Cancer' and the other says 'Chemo Sucks'. I didn't want 'Chemo Sucks'. Me I have made a decision to blame the cancer and think of chemo as helpful. Not neccesarily a likable guy. Kind of the local guide. Like Gollum, in Lord of the Rings.

I can take my cancer hat and wear it inside out if I don't want to flip off the world, and I did that going to the doctor's but then wore it proudly to the amusement of the staff. My doctor had the week off, so I had another doctor, Dr. Makkur, who had to be brought up to speed on the particulars. He was stretched a bit thin covering Dr Schnur's patients and his own but he still took his time with me. (It surprises me how patient they all are.) My white cell count is still hovering at 1400, and Dr. Makkur vacillated on giving me my chemo. Dr. Schnur had given it two weeks before when I was at 1400, hoping that as the Hodgkins comes under control my counts will rebound. If they don't this time, there's a drug that will increase the count.

He decided to give it--which I preferred, honestly. I promised him to be, not housebound, but to lay a bit low and avoid people with germs. So if you have germs, please wash your hands before reading this blog.

Thursday, December 30, 2004

On Balding

When my doctor told me I'd lose some, most or all of my hair, I have to confess, I didn't think it would be that big a deal. But to my surprise, it is. Adam is nineteen, and although he wanders around in his boxers all the time, I've been careful for years not to appear in front of him in any state in which I couldn't legally go out in public. So if I get up in the middle of the night, since I sleep in a t-shirt, I reach for my pants.

Now, the first thing I reach for is a cap. I still have hair. Quite a bit. It's thin, and you can see some scalp through the strands, but I have more hair than a lot of guys with comb overs. (Not Donald Trump, but a lot of guys.) But I have a morbid fear of upsetting people. And I feel like a walking momento mori. In particular, I'm afraid of upsetting Adam.

It's for very selfish reasons. At nineteen he's a lot more engaged in the world than he is in his family (which is part of the business of being nineteen.) When he can't find any of his friends to hang with, he will happily sit and talk to me--as long as he's been awake for awhile. (not a morning person.) But I remember when a friend's father had cancer--she spent an enormous amount of time not being at home.

I'm afraid that if I wander around here sparse and straggly, besides looking more than a little unkempt, I will push Adam away. So I reach for my cap. And I'm afraid if I'm sparse or bald in public, I will disturb people. Eventually, it may be out of my hands. If today's treatment results in more hair loss next week, I might lose eyebrows and eyelashes and I can't really do a whole lot about that. (I can draw in eyebrows, and do my best to look like a 40's starlet--that being an era when women seemed to pluck their eyebrows out and then re-draw them in, often in high arches that gave them a look of perpetual surprise. But eyelashes are pretty much beyond me.)

I'll be oddly glad when the in-between stage is over.

Wednesday, December 29, 2004


Tomorrow is another chemo day, unless my blood counts are too low, then chemo day is Monday.

I have been thinking that I should point out to people that this is all really far less awful than it sounds. Hodgkins has an incredible cure rate. I'm at the fourth best hospital in the country* with a doctor who made the 2002 edition of Best Doctors in America. My presentation of disease is mild and standard, which makes having a great doctor at a great hospital a little like calling the National Guard to get your cat out of the tree. The treatment is pretty easy to take.

But I've decided I prefer that people think of me as suffering and brave, so I'm not going to do that.

*The best hospitals in the country are:

1. John Hopkins

2. Mayo Clinic

3. Massachusetts General in Boston

4. The Cleveland Clinic

From U.S. News and World Reports.

Tuesday, December 28, 2004

Susan Sontag...

The Nice Doctor

“I think it puts an interesting question to the audience: Would you rather have an unkind person who is right, or a kind person who is wrong?” Hugh Laurie, on playing a brilliant but asocial doctor on House.

I was asked this question, indirectly, by one of my doctors. The specialists who first diagnosed me with lymphoma referred me to my oncologist. After I met with the oncologist, the ENT who had referred me said that Dr. Schnur was a good doctor. I said he was nice.

The ENT showed a flash of irritation and suggested that good was more important than nice.

I know that, of course. The Reed-Sternberg cells that identify my malignancy don't give a rat's ass about Dr. Schnur's bedside manner. They won't politely roll belly up because he is caring and compassionate. Nor will the chemo drug bleomycin chemically alter in potency, like water to wine, in the presence of a nice doctor. And I want my clincian to be brilliant, thank you. I want him to be the guy that the son of the Sheik of Oman is referred to when he comes to the U.S. to be treated for lymphoma. (Not that the Sheik of Oman's son has lymphoma, or even exists, as far as I know, but Cleveland Clinic, where my doctor practices, gets it's share of wealthy Arab princes coming for medical treatment.)

So why, when Dr. Abelson said my oncologist was good, did I respond that he was nice?

Well, I've thought about it. And I appreciate Dr. Abelson's flash of irritation. Four years of med school, residency, specialization, boards, constant work of keeping up with the literature on top of long hours of practice, all to be the best, most informed, physician that he can be and patients worry about nice. But unfortunately, I say to you, Dr. Abelson, as a patient I have to take that on faith.

When a patient sees a doctor, we really can't judge how good the doctor is. I mean, I have some clues; the Cleveland Clinic has their pick when it comes to hiring, and I was referred to Dr. Schnur by another physician. I can get a second opinion. I can even pay a fee to an online service which will tell me where the doctor was educated, what boards the doctor passed, and whether the doctor has been subjected to disciplinary action. But I can't tell if the doctor is good.

Thanks to the legal climate of malpractice, there is an aspect of doctor patient care which is adversarial. There are things doctors can't say, and things they are forced to say in carefully circumscribed language. So some of the relationship between doctor and patient is in code. And I was sent some good signals by other doctors. My general practitioner was pleased to hear who my oncologist was. Good sign. But the truth is, for all I know everybody likes him because he's easy to talk to, or they play poker together on Thursdays. There's no Consumer Reports on doctors. (And in fact, there's an interesting article on that in The New Yorker and they have an interesting online interview with Atul Gawande about his article at the New Yorker site.)

There's an old joke.

Q: What do they call the guy who graduates last in his class at med school?
A: Doctor.

So I go to the doctor and I'm apprehensive. I'm looking for clues. One of the things that's important to me is how a doctor takes my history. How he or she listens. What questions he or she asks. What he or she does when touching me. How he or she looks at me. And whether he or she talks back to me. I like information, so doctors that say things to me like, 'Do you want to see your CAT scan?" score high on my doctor scale. I particluarly like a doctor that seems to show a little care about how much I want to know. I know some patients don't want too much information. It matters to me that my doctor seems to be gauging how much information that I want. It matters to me that my oncologist seems to have all the time I need when I'm in his office.

And I've been conditioned by years and years of medical shows--from Dr. Kildare, through Medical Center and ER to now, House, that if my doctor gets involved in my case, he'll go the extra mile, and he'll save me. I want him to like me. I want him to show engagement with me. I know I have a rather textbook presentation of a really curable disease and that I seem to be responding to treatment pretty much as expected, but it's not my textbook, it's the doctor's. In my textbook, I have the most serious illness I've ever had in my life.

I don't have a word for all of that. So I default to that wimpiest of words--nice. Yeah, I'd prefer a brilliant doctor who's an asshole over a mediocre doctor who bakes cookies for me, but I don't get to make that choice.

So I hope my oncologist is an excellent clinician. (And actually, I think he is.) But I can report confidently, he's nice.

Monday, December 27, 2004

Failure Drills

Adam's oldest friend, Jason, joined the Marines when he finished high school. He's like the youngest Marine ever to complete Recon training. He's smart, funny. He's home for two weeks leave. He'll be deploying to Iraq, probably in March. (He's been supposed to deploy for months, but it keeps getting pushed back. As far as I'm concerned, if they could just keep pushing it back until he gets out in early 2007, that would be Just Fine.)

On Christmas Day, Gary and Jane came over with Jason. Gary is a friend of Jason's family and Jason lived with Gary and Jane for the last couple of years of high school. Jason's own family is pretty broken, and he has assembled a kind of ad hoc family in its place, of which Bob and I are a part. All this to say that we spent a lot of time talking about Jason, with pride and trepidation. Jason tells amazing stories about his training for recon, which is the Marine equivalent of the special forces. Jason, Adam, and some of their friends were off playing video games or something, and Gary started talking about how Jason would mention something called 'failure drills.'

"We did failure drills today," Jason would say.

Gary finally asked what failure drills were? Some sort of Marine discipline where you had to do some sort of drill when you screwed up? The equivalent of fifty push-ups for people who are in really good shape?

They are drills for what to do when at a checkpoint and someone won't stop. Failure to stop. It's one shot to the chest and two in the middle of the forehead.

What do you say in the face of that? Our Jason.

Makes the fact that in the last five days I've lost about 75% of my hair seem really easy to live with.

Sunday, December 26, 2004


Had friends come for Christmas and made a big pot of jambalaya and a ton of cookies. Jambalaya isn't exactly a Christmas staple, at least not in Ohio, but one of the results of chemo is that beef and pork don't right anymore. I had planned to have smoked turkey, but because of the bad weather, my grocery didn't get its orders.

I learned the jambalaya recipe when I was just starting to cook seriously. I was living in New York. When I was in college, I made bread and soup and some simple dinner recipes, but the jambalaya, which was in an old paperback cookbook owned by my roommate, was full of mysteries like, 3 tomatoes, peeled, seeded and chopped and raw shrimp. It was one of the first recipes I ever made that required significant prep work, Chopping opinions, boiling a chicken, chopping peppers. It seemed to me that it took forever to get to the point where I could 'start cooking.'

It took me years to realize that I was, in fact, cooking when I was doing the prep.

Since then I've actually modified it to add even more prep by adding roasted poblano peppers, because I like the hot, smoky taste of the chili. The traditional Louisianna pepper is the cayenne.


1 chicken (fryer)
6 cups chicken broth
1 lb andouille sausage
olive oil
2 large onions, chopped
2 green peppers, chopped
3 cloves of garlic, chopped
2 poblano peppers, roasted and chopped (optional--can be replaced by a couple of serrano peppers, chopped)
3 tomatoes, peeled, seeded and chopped
3 tablespoons tomato paste
1/4 teaspoon cayenne pepper
3 cups uncooked rice
salt and pepper to taste
1 lb shrimp, peeled and deveined

cut up the chicken into parts and boil in the broth, skimming the froth. Reserve broth and let chicken cool. Take the meat off the bone, discarding bones and skin. Cook the andouille sausage in olive oil in the bottom of a dutch oven or large pot. Cut the sausage into half inch slices and reserve.

In the pot where you cooked the sausage, saute the onion and green pepper and garlic until the onion is translucent. Add the rice, the cayenne and the chopped hot pepper and toast the rice in the oil for a minute, then add the reserved six cup of chicken stock and the tomato paste and the chicken and sausage. Bring to a boil, cover and let simmer for about twenty minutes, or until the rice is cooked. Your house will smell fabulous by now. Add shrimp and stir it into the rice and put the lid back on for five minutes.

Serve six or eight, easily. For those who like things really hot, tabasco sauce is from Louisianna and is traditional. This dish holds well on a buffet table. And like many dishes involving simmering and lots of ingredients, tastes better on day two.

To roast a pepper on a gas stove, drop it on a lit burner and when one side blackens, turn it with tongs until the whole pepper is blackened on the outside. Put the blackened pepper in a paper bag and fold the bag closed and let the pepper sit and steam for ten or fifteen minutes. The charred skin will rub right off. If you don't have a gas burner, you can accomplish the same thing by charring it in the broiler, but it lacks the atavistic thrill of playing with the flame.

Thursday, December 23, 2004

Treacherous Morning

I had been thinking about knowledge and forgetting all day yesterday so I had to post that. But the big news this morning is that the Incredible Snowstorm has turned to rain. The snow is now wet and heavy. And Bob's car, his baby, his darling WRX, is now stranded on it's belly on a pile of snow left by the passing snowplow at the foot of our driveway. And now the rain has turned to snow and it is freezing.

We didn't plow our driveway because we both have good four wheel drive, and frankly, we were just lazy.

The good news is that Adam is home from school and his best friend Jason is on leave from the Marines. They are at a friends where they spent the night, but they are on their way home to rescue Bob.

More bad news? I have a house full of boys and only four eggs.

Good news? Bob has decided to call off work.

So it's a two post morning!

The Tree of Knowledge

Context is everything.

For awhile I fascinated by the idea of knowing too much. I'm a research person, a get-the-facts person. The Tree of the Knowledge of Good and Evil seemed a strange metaphor to me because I couldn't imagine why it would be good to not have knowledge. (Excepting kids and sex--I can see the point of that.) Knowledge as Power is pretty much the standard in Western culture, I'd say. We associate knowledge with the idea of progress. At the same time, I wondered about people who had been put in extreme situations. I thought one of the difficulties of Vietnam was that after a tour of duty, someone would come back, be discharged, and then having spent nine months in a situation where the rules of everyday life were really, astonishingly basic--do anything you can not to be killed, including killing others, destroying their homes, taking what you can--they were expected to worry about things like Walk/Don't Walk signs. A lot of social rules are predicated on making them matter more for the individual than they probably actually do. It makes a lot of sense to have Walk/Don't Walk rules when you have 20 million people working in Manhattan, but it doesn't necessarily make sense for the guy standing on the corner. And nothing particularly cosmic is going to happen if he ignores the rule. He's not going to die, he's not going to jail, he's not even going to miss lunch.

I re-realized this when Adam was a teenager. When he was sixteen, I suddenly understood that if he stopped doing what I told him to, there wasn't a whole lot I could do. I mean, if I said to him, 'You can't go out tonight, tomorrow is a school day,' and he said, 'Fuck you,' and left, what was I going to do? Try to lock him in his room? Our whole relationship was predicated on the power I had accrued raising him, and the glue of social and familial habit. And of course, I know people who's teenaged children did figure out that there was no stopping them from what they wanted to do. Adam was always more invested in life having a certain, predictable order with his family than he was in rebellion, but I think in some essential way, he hadn't eaten of the Tree of Knowledge of Good and Evil. He didn't realize how powerless I was.

Illness is another bite of the apple. People talk about living each day knowing it could be your last, but the truth is, that has its drawbacks. In the short time before I understand how not-severe my illness was, I found myself thinking things like, 'I've got to clean my office. I couldn't possibly leave that mess for someone else.' Years ago, when we were selling our house, I had to go to work every day leaving it in shape to be seen by others. And living with a sense of my immediate mortality has sort of the same effect on me. In a sense, we didn't live in the house anymore. It was more a shrine to our former lives in the house. Being sick makes me long for the messy unconcern of not being sick. Of not having the knowledge.

In neurobiology, that is, brain science, they are studying how important it is to forget things. In my own life I keep thinking of how when I have a cold or a sore throat, my symptoms become the filter through which all experience passes, but how they imperceptably subside. There's not a moment where I suddenly realize that at this precise instant I got over the cold, but there is often a moment where I recognize I have, in fact, become healthy, and it is pleasurable. But a few days later, I cannot really recapture the experience of being sick, except in a sort of intellectual way--I know I had a sore throat, and I know it drove me nuts, especially at night, but I don't really have a sense-memory of it.

I think that is a miraculous thing.

I think it goes back to that cancer survivor thing. For me, to be a cancer survivor, I think I either have to get to the forgeting what it felt like to be sick, or I have to be deep enough into this whole process that I forget what it's like to be well. So that surviving is the context.

Wednesday, December 22, 2004


Most of my life I read all the time but somehow, when I got married and started doing job and kid, I sort of stopped reading novels nearly as much. I've been watching way too much TV lately, so Monday night I went out and got books to read. Alice Munro's latest collection and Snow by Orhan Pamuk.

But I got something even better than that in the mail. From Leslie What (hi Leslie!) I got a Chinese Great Leap Forward Army hat covered with pins and a cool wig stand, dark chocolate with chili in it (which is really quite good because you feel the chili as much as you taste it so it's like chocolate that makes your lips tingle) and the perfect reading material for Chemo Brain--The Weekly World News. The Weekly World News has in it, among other things, 25 signs you're going to hell. One of them is that you hate harp music. Another is that you have severed heads in the freezer. It's my opinion that the severed heads are a pretty good tip.

For those of you not so blessed, here is The Weekly World News online version reporting important literary news. Remember that thing about an infinite number of monkeys and typewriters?

Tuesday, December 21, 2004

Oh yeah--

Adam rolled in from college last night at a little before seven. We all bonded and he headed out three hours later to spend the night at a friend's. But he's home briefly now before going to another friend's house tonight.

It's kind of like having all the fun and none of the pressure of having a kid.

Thomas Hodgkins (1798-1866)

I got curious about the person Hodgkins Lymphoma is named for. I imagined somebody like the guy in the Thomas Eakins painting, The Gross Clinic. You know, some guy in a long black coat with a scalpel.

Thomas Hodgkins was a Quaker and I did find a picture of him. He studied to be an apothacary and then a physician. He was the kind of stiff, religious guy who would refuse to take an oath to tell the truth in court because as a Quaker he always told the truth. He was also the kind of man who would work ten and twelve hour days at a public clinic, treating the poor of London. Principled, outspoken in his Quaker way, and respected as a pathologist.

As a physician he seems to have managed to be a smart guy in the right place at the right time--he spent some time in Paris where he learned how to use the stethescope from Rene Laemec, who invented it, and brought it back to London.

In his first year at Guy's Hospital in London, he had a patient, a nine year old boy, who died. Hodgkins did an autopsy which showed that the lymph nodes were enlarged and hard. They were 'in chains' (which I assume means he found clusters of nodes.) He described what he found, and that's how Hodgkins Lymphoma got its name. He published a paper in 1832 On Some Morbid Appearances of the Absorbent Glands and Spleen. He died in Palestine giving medical aid to Jewish settlers.

Hodgkins Lymphoma (called Hodgkins Disease) was pretty much a death sentence until the 1940s, but trials with irradiation therapy made it one of the first cancers to be treatable. But the strangest treatment may be mustard gas. Apparently after an explosion in a shipyard in Bari, Italy exposed soldiers to mustard gas, doctors noticed that the gas suppressed the immune and lymphatic systems. So in the late 40's and early 50's, clinicians started treating Hodgkins by injecting a form of mustard gas into the patient.

It's a pretty graphic reminder of the way chemo works. You poison the patient and hope that the cancer dies first. There is still a chemo regimen (call MOPP) used for relapsing Hodgkins that uses mustargen, the mustard gas drug. My particular regimen, ABVD, has mostly replaced MOPP because it is less toxic and has fewer longterm effects.

I am always astonished at the chain of observation and serendipity upon which so much science is founded. Soldiers are exposed to mustard gas, their immune and lymphatic systems are supressed, and someone notes that observation and thinks of Hodgkins disease. Makes me feel lucky.

Monday, December 20, 2004

Christmas in the Suburbs

Adam comes home from school today--if the snow allows it. The commute in to work is apparently a disaster.

Bob's reaction to all the stress has been to decorate the house for Christmas. We bought Christmas tree lights that you can program, and we bought about twice as many as we needed for the tree. I have ornaments from my family and Bob has ornaments from his and we put most of them up. From a design point of view, the result may be...excessive. But from the festivity point of view, it's pretty fabulous.

This morning, in the shower, a more than usual clump of hair in the drain. All I could think is that soon I wouldn't have to worry about shaving my legs.

Sunday, December 19, 2004

Bored of Illness--and hypervigilence

Okay, I've been doing this illness thing for weeks. First I was pregnant with the secret. Then I was deep in research, learning words like mediastinal. Then I was coming out--which in a sense I still am. And then there were all the physical manifestations of chemo. Now I'm bored.

I am, when it comes right down to it, not so great at follow through. Greg mentions the slog, which is what life is. And yeah, he's right. But damn if it's not boring.

I know someone else who, it turns out, has lymphoma. Not Hodgkins, but still. She talks about how she registers every bodily twinge. And Greg and I have talked about this, too. Illness makes me a serious hypochondriac. Hypervigilence. I know it's a normal reaction to having something come out of nowhere. 'The lump' is a staple of the way your life can turn on a dime, normal one day and completely different the next. And I had 'the lump.' And one minute I was planning the next six months of my life one way and the next minute I was without real sense of where I was going.

So it happened. And now my brain has seized on the fact that it can. Once I found out that the lump above my collarbone was lymphoma, my back and shoulders started aching. And I was worried that meant lung cancer. Of course, what it meant was that I was tense. And since I've had every test known to man, including P.E.T. scans, I know more about my body and health than I have ever known in my life. But my body has become a theater of bad drama. I have a sniffle--oh no, with my white blood count in the basement, does that mean I'll be really really sick? Maybe I shouldn't go Christmas shopping. (There are lots of reasons to avoid Christmas shopping; parking, the relentless commercialization of things, but not my white blood count. The doctor says that last thing I want to do is become a shut in.) Soon I'll be like the med student who sees in themselves every disease that they study.

So I have decided to live an unreflective life. I will pay no attention to aches, pains, whatever. I feel a little tired now but I shall ignore it!

Yeah, right. Okay, I'm not going to my writer's group today because Becky's kids have been exposed to their grandmother's sore throat and yesterday my white blood count was so low they debated doing chemo. And it's snowing. And I'm still feeling a trifle queasy in the presence of food. And I'm easily tired.

Okay, I'm going to snatch up the dachshund (who is always cold, and who is colder now that we have well over a foot of snow--she looks out the sliding glass doors and shivers) and watch bad television. But I'm just doing it for the miniature dachshund.

Saturday, December 18, 2004

Twice--does that make me a Veteran?

Two chemo sessions probably doesn't make me a veteran. I have mentioned a couple of times how Ruby Tuesday's blog makes me feel as if I have a map of the territory, though, and in the same way, with a second chemo session I feel as if I have some general idea of what might happen next. A sore throat, a bit of fatigue (maybe a little more than the last time.) But Ruby Tuesday told me about some great mouthwash and so far, much less mouth-soreness.

How important it is to have some sense of what will happen. When I first learned about Hodgkins, I immediately went researching. It just makes me feel better, even if it is a false sense of control. I know other people, many of them smart, competent people, who prefer not to know. But that's not me I'm afraid.

What I can't figure out is how much to plan. I have a possible freelance gig but I feel compelled to tell the employer that I've got Hodgkins, and you know, I'd be hesitant to hire someone who may not have the energy at the time we need it. Someone asked me about getting together to do something in February--well, it will depend on how I feel. Much of how I feel depends on how close it is to a chemo session. But, for my second chemo session, my white cell count was low. We went ahead and did the session anyway (if you're contagious, don't come near me.) But this means the third session may be postponed, so I can't extrapolate out...

None of this is even remotely cosmic. It's just...juggling.

Friday, December 17, 2004

Chemo, second round

It's chemo day. I go in at 10:15 this morning, get my blood test to determine if my bloodcount is high enough for the drugs (which this early in chemo it undoubtably is) and then sit under a warm blanket and read while on IV. I'm a little unhappy, because I had tickets to see Messiah tonight. A friend, Peter Kvidera, is in the Cleveland Symphony Chorus. When they scheduled me chemo for today--the fifteen day mark--I said, 'But I have tickets for Messiah!'

My doctor gave me a sympathetic look and said 'That's too bad.' By which I understood that perhaps I should just give up on Messiah. I'd been planning to go with Geoff Landis and Mary Turzillo, friends (and fellow writers.) So I sent them all the tickets in the hope that they could find someone else who might want to go.

Yesterday I handed in grades and finished making copies and signing letters of recommendation for a couple of people interested in grad school, then stopped and picked up Chinese food. My fortune said, 'Prepare today for the demands of tomorrow.'

In other news--I finally cleaned up the kitchen.

Thursday, December 16, 2004

Cancer Survivor

(First, a technical note. I changed the format of my blog so that you don't have to have a blog on blogspot to comment. Until Greg F. told me he did, I didn't realize it was set that way. So now I think anyone can post any way, even anonymously.)

The American Cancer Society says that I'm a cancer survivor from the day of my diagnosis. Since the day of my diagnosis was the first day I thought of myself as having cancer, I didn't personally think of myself as a survivor. Pretty much those first weeks, I couldn't even bring myself to think of myself as sick. That felt a bit like fraud, like a I was preying on people's sympathies inappropriately. I had no symptoms, and as subsequent tests would prove I was physically very very healthy (except for that pesky lymphoma thing) I felt more as if I was pre-sick. In addition, what I have is highly curable.

Some people use the term 'cancer survivor' to include family of the person with the disease. Which seems in one sense a little flaky--Bob isn't going to die of cancer even if I do. But in another sense, seems not so inappropriate. I mentioned in an earlier entry that Bob and I picked up Harvey Pekar and Joyce Brabner's Our Cancer Year. It's a comic book by the people who were the subject of the film American Splendor (which along with Lost in Translation was one of the best movies of 2003.) The comic book, which was written jointly by both Pekar and Brabner, shows how while physically the chemo was horrible on Pekar, in other ways, it was almost as horrible for Brabner, who became ill at times herself under the stress. I have felt from the day I got my diagnosis that Bob has had a terrific strain put on him. His parents both died of cancer. And to have his wife diagnosed with it--well, it must feel a little like deja vu all over again.

So I don't feel like a cancer survivor. But I can understand the idea that everyone who is diagnosed with cancer is one. In some ways it feels a little like that American thing of support groups and let's be all-inclusive. But if you define a survivor as someone who is in remission, than someone like me, who will have a fairly easy time of it, will be a survivor when my treatment meant I never spent the night in the hospital and may never have had to miss a day of work, if I worked nine to five. While someone else, maybe with multiple myeloma, who is alive after five years and is still receiving treatment, who is looking for clinical trials, and has had life-threatening infections and crises and who is actively working to survive in a way I will hopefully never have to, would not be a survivor.

I am a little troubled by this survivor business. There is something odd about our culture and people perceived as victims. I read someone (and I wish I could remember who and where) who pointed out that the popular symbol of the Vietnam War is the P.O.W. I don't know if I completely agree with that. I remember the Vietnam War and there are a lot of symbols for me. But it is true that we tend to elevate victimhood to some special status. Elie Wiesel said that surviving the Holocaust did not make a person better, but the wise figure in the bad made for TV movie or even the bad Hollywood movie (like, say Driving Miss Daisy) is always the homeless guy, the holocaust survivor or the black guy who retains his dignity despite racism. But the popular conception that anything that doesn't kill you makes you stronger flies in the face of all wisdom. If a heart attack doesn't kill you, it still does damage your heart muscle and it does not make you stronger. Now maybe you decide to exercise, eat better, stop smoking and lose twenty pounds and you may end up healthier overall, but that's despite the heart attack. You could just as easily lie around after the heart attack feeling sorry for yourself. Or the heart attack could be so severe you're a cardiac invalid and basically there's not a lot you can do. Maybe being the victim of something will be the catalyst that makes someone decide to better there life, maybe it won't. The one thing you can be sure of is that victimhood will make them in some way, for some period of time, powerless.

Hodgkins hasn't yet made me do much of anything. And until I had my first treatment, I hadn't even survived anything, unless you count two C.T. scans, a chest x-ray, a pulmonary function test, a P.E.T. Scan, an echocardiogram and three blood tests. While they were sometimes interesting and sometimes mildly uncomfortable, I never felt as if my life had been threatened or I had survived anything. I guess I could have had an allergic reaction to the substance they inject to provide contrast on the C.T. Scan. Truthfully, I've had workouts that were harder to survive than any test I've had.

But I like being a survivor. I am grateful for the way people treat me, even if I don't deserve it. For years, if someone had cancer they were often treated as if they were somehow contaminated. Unclean. I'd just as soon not be Bagger Vance, but it's a lot better to be Bagger Vance than it is to be Typhoid Mary.

But being elevated to a kind of secular sainthood plays into all of my character weaknesses. It allows me to be lazy and unreliable about stuff because, hey, what can someone say? So my tendancies to watch too much daytime TV and decide to eat out rather than cook and wash dishes (among other more egregious vices) threaten to go completely unchecked.

Wednesday, December 15, 2004

The Hair Prosthesis

That's what the prescription said, 'hair prosthesis'. I will probably lose my hair in chemo, which my doctor said is the adverse affect people are most concerned about. Ruby Tuesday, who I met yesterday on the Hodgkins listserve (hi RubyTue! thanks for the mouthwash advice!) talks about it a little in her blog ( I was really grateful to read her blog. It kind of gave me a map of the territory, if you know what I mean. Everyone has a different experience, but some of the major landmarks are the same.

Hair loss sounds like a major landmark. I mean, it marks women as different when they don't have hair or eyebrows or eyelashes. And I dread the kind of boiled egg look of no eyebrows or eyelashes. I plan to ask if people had any luck drawing eyebrows in before they went out in public. Afterall, women of my mother's generation plucked so vigorously that many of them had no eyebrows--they drew them in all the time. Those high arching lines like starlets. Anyway, I wear glasses, which should help, right?

I read that if I was going to get a wig, I should get it before I lost my hair. So I decided to do it before I had my first chemo, because I didn't know how ambitious I would be afterwards. I went to Kristi, who cuts my hair and told her I'd be having chemo and asked her advice and she sent me to a store that sells everything from custom human-hair wigs for thousands of dollars to $25.00 bright blue synthetic bobs. I don't want my 89 year old mother to know I have Hodgkins because with dementia, I'd have to tell her every time I saw her, and it would upset her. Although I have always had curly hair, and have always hated it, I put aside my chance to get long straight Cher hair, and told the woman at the wig store I wanted one pretty much like my own hair. That's when she told me that if I got a prescription from my doctor, I could take it off my taxes.

You know, I don't quite think of a hank of hair as a prosthesis. It just doesn't seem to rank up there with an artifical leg. But I guess I'm using it for the same reason. I bought it, brought it home, and set it up on its styrofoam head in the bathroom. I'll have it trimmed when I lose my hair--the woman at the wig and hat store said that many people have them trimmed a little too close if they do it before they lose their hair. I try it on every so often and it looks...different. Not just haircut different, but significantly different. I don't think I'll wear it every day. But it will be nice to have when I just don't want to be noticed as different.

People have told me about the character on Sex & the City who had a different wig each episode, and if I had the money, I swear that's what I'd do. And hats. I plan to wear hats. I've never worn hats before. Bob found a website run by a woman who had cancer who makes cancer hats, including a nifty soft fleece hat that says 'fuck cancer' on it. He ordered it for me. More proof I married the perfect man.

Tuesday, December 14, 2004

Chemo, the first time

I had my first chemo treatment on a Friday (12/3, specifically.) I was eager to get started. I wish I could say that it was because I wanted to fight this thing. But the truth is, I viewed treatment as the greatest excuse for doing nothing ever invented. 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. I knew, intellectually, that it would be a bit more complicated than that.

The treatment itself is not bad. I drive to the Cleveland Clinic in Beechwood, go up to the oncology suite, sit down in a big comfy chair a little like a dentist's chair. Jeanette is my favorite nurse. She's been an oncology nurse for over twenty years. She was the person who's job it was to talk to me while getting my bone marrow test. (Note: whether a bone marrow test is mildly annoying or horrible is largely operator dependent. So if you ever get a bone marrow test, you what my doctor, Dr. Schnur. He's really good. My test was merely annoying and mildly uncomfortable.) Someone asks if I want tea or juice or water, and if I want cookies. Do I want a blanket? I had tea and cookies and a blanket and the blanket was heated. I read Dan Chaon's You Remind Me of Me, which I highly recommended, and chatted with Jeanette while she hung saline and started an IV. Jeanette gave me an Atavan (tm). It's like valium, only it also has anti-nausea properties, which is the ostensible excuse for why I got to be somewhat stoned for my chemo treatment.

I get four drugs. Two are what are called a 'push' meaning that Jeanette or another nurse have to stand there and inject them--this takes fifteen to twenty minutes. The other two are drip. Three of them are clear, and one, adriamycin, is bright red and turns my urine peach colored for a day. Okay, maybe that was overshare. There's a lot of overshare in cancer. All the drugs have long horrible lists of adverse affects and drug interactions. Hair loss, of course. Nausea isn't the problem it used to be, though, they give really strong anti-nausea drugs. Imagine my dismay when I learned that women on chemo tend to gain weight.

Everyone says the exhaustion is the worst. Well, it may get to be, but at first, mouth sores are the worst. The fact that my tongue is sore--it's that old business of becoming aware of something you usually don't notice--is the first really annoying adverse affect I've had. I lie in bed, tired, and think about how my tongue rubs against my teeth. Finally, I used Ora-Jell. It hurt like hell when I put it on, but by God, it worked.

I've also had some joint pain. But mostly, I've been pretty normal. I was tired the first couple of days but went back to Curves and exercised and now, a little over a week later, I'm pretty much without much sign or symptom except for a bit of muscle ache.

It's weird though. Just the thought--chemo. All the images it conjures up. The whole point of chemo is to introduce toxic substances into the patient's body. Since malignant cells divide more often and metabolize more quickly, the idea is that the cancer died before the patient. In the early days of chemo, this wasn't always the case. Even now, a day after chemo, I walked around thinking how weird it was that I had been poisoned. I felt...toxic.

Last night, at the library, Bob found Harvey Pekar and Joyce Brabner's comic book Our Cancer Year (from Pekar's American Splendor comic books). Pekar was diagnosed with non-Hodgkin's Lymphoma and treated in 1991. Wow. Chemo has come a long way in a little over a decade. I'm grateful at how much advancement has been made dealing with the effects.

There are no such things as side effects. Everything the drug does is an effect of the drug, and the drug is just a chemical. It just does what it's going to do. So more and more, people talk about adverse effects. I keep thinking about this distinction, and how weird it is to voluntarily poison myself. Of course, the alternative to treatment sucks.

Monday, December 13, 2004

I Am Not a Threat

I've had a ton of tests since I started this. A chest x-ray, an array of blood tests, a pulmonary capacity test (107% of expected capacity for my age--and, I had a cold!) two CT Scans, and my favorite, the P.E.T. Scan. For a P.E.T. Scan, they inject the patient with glucose with a radioactive tracer (flourine in this case, although for some brain and prostate scans, the hot new tracer is Carbon 11.) Cells use glucouse as fuel, and malignant cells metabolize faster than regular cells, so the assumption is, malignant cells will snatch up the glucose like the rude guy at the buffet who takes all the crab legs. They injected me, and then told me I had to sit still for forty minutes. If I used my muscles, that would increase their demand for energy and they'd metabolize faster. So I sat in a waiting room in the basement of Hillcrest Hospital watching Regis and Kelly, and practicing a zen-like calmness. Kelly is so skinny, I discovered, that her head looks too big for her body. Then I went out to the truck (P.E.T. scanners cost about half a million a piece. Cleveland Clinic has two, one of which is transportable, and it is trucked around to Cleveland Clinic hospitals.) In the truck, I had a scan. The scanner is open, not closed, meaning it's like a big metal doughnut. I dozed and listened to classic heavy metal music--the tech's choice. The tech told me I had taken up the glucose well, a really clear scan. I credit Kelly of Regis and Kelly.

But the coolest thing was that after I finished they gave me a card. This was something like 11:00 in the morning. Apparently the radioactive tracer in my system might set off radioactivity monitors in airports until 5:10am the next day. (How can they be so precise?) The card explains I've had a scan and states, 'This Person is not a threat to the general public.'

I'm planning on having it laminated and carrying it forever.

Sunday, December 12, 2004

The Secret

I had a biopsy on Nov. 17. The weird thing about going to the Cleveland Clinic, where I had been the day before, as well as Wednesday and Thursday of previous week, is that when I was there I was not carrying around this secret. 'What's up?' everyone asks. 'How are you?' I'm great. In fact, it turns out, I'm very healthy except for one thing, this lymphoma thing.

On that Sunday I took a bottle of wine to my writer's group. I had things to celebrate, the short story collection coming out in June, and the completion of the Ilovebees project. (Check out and if you are genuinly interested in Alternate Reality Games, get thee to the ARGN Network.) Much to genuinely celebrate, but weird, considering. Everyone chatters about their news--Steve Hayward about his book, and all of us about the things we have coming up. I don't want to tell people, certainly not before the biopsy is final, and yet, I don't doubt for an instant that I have it. I know everyone will change when I do.

It's a little like coming out, I guess. People will have to readjust their ideas of me. I will change irrevocably in their eyes the moment I announce it, and although I may certainly survive, I will become, for some time, a walking momento mori. And people will calculate what to say, what to ask. And it will happen again and again. So how do I tell people--send out an email? Like people send out change of email address emails? Isn't that crass. Do I have to tell each person in person? The phone calls, to my sister, to friends. I hate to do it to them.

It is a little like coming out, without the threat of someone disowning me. Just the opposite of that, in fact. There was a time, not so long ago where when someone had cancer, people avoided them. But the people I tell keep saying, if I need anything, give them a call. Instant sympathy. For something that hasn't even really affected me yet. Someone once asked Chip Delaney how old he was when he came out. He said, you never stop coming out. You are always meeting people and having to 'come out'. All these people I know, who do I tell? Do I tell my family? Of course. My friends? Of course. My students? I've decided not to.

But for everyone else, there's this blog. I asked Chip about the autobiographical writing he did, and he indicated he did it to protect himself. I didn't understand then, but I do now.

And the biopsy itself? The biopsy--it's a damned good thing I did shave my legs, it was a full procedure with hospital gown, anesthesiologist, operating room, iv, hairnet and little socks with non-skid soles. On the other hand, the anesthesia, which was a twilight sleep/amnesia kind of thing, wore off in less than five minutes once they removed the iv and then I made Bob take me to lunch. (They tell me that when I woke up--apparently I slept through most of the procedure which is their intent, I said, 'I'd forgotten where I was!' and the surgeon said, 'You're in the Caribbean!')

How I Learned I Have Hodgkins

First, it's important to know that Hodgkins is the worl'ds most curable cancer.

On Saturday, Nov. 6, I noticed I had a swollen lymph gland just above my right collarbone. Bob--my husband--wanted me to go to the doctor, but that struck me as a bit of hypochondria. I didn't feel sick. I figured a lymph node had sucked some infectious agent out of my system and was inflamed. But when it hadn't gone down by Monday, I agreed to go to the doctor. After I worked out at Curves and took mom to lunch and went to the dentist (where I was given a pat on the head by the hygenist for having done a good job with my new electronic toothbrush, improving my peridontal scores--felt like I had aced a test or something) I went to Cleveland Clinic Urgent Care.

Every year, right before I travel somewhere (usually New Mexico) it seems as if I have some weird problem that sends me to Urgent Care at Chagrin. A couple of years ago it was an abcess that had to be drained. Last year it was a sore throat (and one of my students had strep.) I felt silly going because my lymph node was swollen. But went. The nurse practitioner saw me--which pretty much told me how seriously to take this. She looked at it and said, 'Well that's weird.'

So she called the doctor in. He palpitated. It was soft, seemed to have come up recently. "Have you got a cat?" he asked. I like this guy, I've seen him before. He did residency on the Navajo Reservation and we've talked about Hanta Virus.

"No, no cat." Adam--my kid--is allergic, so no cats. Of course, the dogs would love if we had a cat.

He was hoping for cat scratch fever. "What," I said, "have you had a case recently?"

The Nurse Practitioner laughed.

"I had one when I was a resident," he said. In Navajo territory. We joked about bubonic plague--since I had been in New Mexico, but back in May. He told me to to take 600 mg of anti-inflammatory three times a day and go see my doctor if it hadn't improved in a couple of days.

By Wednesday it was still the same, I thought. And it had begun to bother me slightly--probably from worrying at it, testing the size with my fingers. I felt it would probably go away on it's own if I ignored it. But in the back of my head I worried a little. Two weeks before, I found out a friend has prostate cancer so cancer was on my mind. And I knew it was on Bob's mind, since both his parents had died of it. I called Cleveland Clinic Solon and my doctor was too booked so they gave me an appointment with Dr. Kendelle Cobb.

Dr. Cobb was a young black woman with small, careful hands and no pretense. I liked her immediately. She asked me all the usual questions--sore throat? No. Fever? No. Night sweats? No. Unexplained weight loss? I should be so lucky. But she didn't like what she felt, I guess. She got me a chest x-ray across the hall, had blood work drawn and scheduled a CT scan for that afternoon. Scary. Turns out, by the way, that you can't eat before a CT scan. You have to have not eaten for four hours. Something to do with what they call 'contrast', which in my case was injected--I assume iodine dye that the CT Scanner would pick up.

Contrast is weird stuff. The technician was great with the IV (as they all are. If you're going to have blood drawn, get a tech to do it, they're wonderfull at it.) She warned me that the contrast might cause me to feel as if my face, ears, hands, feet and buttocks were burning, and that it might make feel as if I had peed in my pants. There would be a metallic taste. Delightful. It was an open scanner--maybe all CT scanners are. Bob thinks only MRIs are closed. It was, of course, miraculously non-invasive and since I got to stay fully dressed, an easy test. Off the gurney, back out and into the car and back to Solon where Dr. Cobb would talk to me about the results.

I knew she was worried about cancer. So when I got home I typed lymphadenopathy into Google (the diagnosis on my referral sheet.)

I found a reasonable site--The American Association of Family Physicians.

On the site it says:

"Findings from a Dutch study revealed that only 10 percent of patients with unexplained adenopathy required referral to a subspecialist, and only 1 percent had a malignancy."

So that pretty much reassured me that I didn't have cancer. You know, two hours on the internet makes me a diagnostician, right?

I was wrong.

But I slept quite well.

I teach on Thursdays, although it's my short day (only one class.) I had my ENT appointment at 2:00. The doctor is a tall silver-haired guy who gave me a hard time for saying clavical instead of collarbone. "Why don't you say collarbone like everyone else?"

I told him I watched too much ER. We agreed the show had gone downhill drastically. I liked him, he looked at me when he talked to me. Why is it so important to like my doctor? Probably because some craven part of my brain believes all those medical tv shows where the doctor's connection with the patient means the docotr goes the extra mile and saves them. He asked the same questions and a few more (had I lost my voice? Did I have persistent throat clearing? Nose bleeds?) palpitated my neck.

And then he told me, he was pretty sure I had lymphoma. I've been trying to think of how to describe the sudden flush, the adrenaline wash like heat that swept through me, almost like being startled. What about Bob? What would I tell him? How could I do this to him? Everything is now different. And then it was like I had already sort of known. I knew that Dr. Cobb had thought it might be cancer. And as I said, I had been test driving the idea since Saturday. But that had been emotional logic, intellectually I knew that a lot of my apprehension was because I had been thinking about my friend and his cancer. Like medical students who think they have whatever they are studying.

The only way to tell, the doctor explained, was to do a biopsy, and he would schedule me for one on Wednesday. Wednesday was his surgery day. I listened and sort of assessed myself. Everything was different, but of course, it wasn't. I still felt the same. I'm still, in a weird way, healthy. Although if something isn't done, I won't be. The doctor continued, that he couldn't be certain it was lymphoma, but he was going down the hall to talk to the oncologist. So I sat, and after a moment, I opened up THE DA VINCI CODE and read until he came back. Very strange, but I was able to concentrate. I wonder, was it so easy to accept because, thanks to depression, I sort of always expect the worst? The doctor came back and told me that the oncologist would see me the Monday or Tuesday after the biopsy--they apparently can't do a forzen slice to determine malignancy the way they can in breast cancer. There's protocal. No food or drink after midnight on Tuesday.

Bob was in Toronto. He had just gotten there. So I called him from the parking lot. I said the doctor was concerned, and that it might be lymphoma. But they wouldn't know if it was lymphoma or an infection until they did a biopsy. I didn't want to tell him in Canada, away from home, but I wanted to tell someone. But I also wanted to leave him a way out. I explained what the doctor had told me, that if it was lymphoma, given my age and the location of the lymph nodes, the prognosis was very good. All true and really, I don't think I quite believe that there is going to be much change in my life. It's foolish, I know, but I was thinking that this will be a major inconvenience, some discomfort. At the same time, I think things like, maybe I won't outlive the dog--and I won't have to go through Smith's death from old age. This way I never have to be like my mother, who is deep in dementia. I will never be alone in a nursing home.

I went online and looked up Lymphoma.

Nights were the worst. I tend to get anxious at night anyway. And now I went to bed wondering if I'ldl be able to sleep. Despite my inability to think of this as serious, I wondered if I ought to clean my office. I mean, I couldn't leave that office to Bob, it wouldn't be fair. If I am sick, or die, who will take care of my mother? She has dementia. Granted, taking care of her just means taking her to the doctor's, taking her out to eat on mondays and Fridays, buying her clothes and make-up and paying her bills. But it's like raising a kid. I know what she might wear and we she won't--blouses, blue, with a sort of late seventies business look. She only wears blue. She needs a new pair of sneakers. I bought her white leather keds and she has worn them to pieces. But she wouldn't wear anything that would look like a modern gym shoe, and she wouldn't want canvas. It's hard to buy her things because I give them to her and an hour later she doesn't recognize it as hers. She hasn't worn anything I've bought her in the last six months, for example.

So far, that has been about the worst place I've been, mentally.