April is Not So Cruel

I can't remember a time in my life when I have ever been so affected by weather. Winter was exceptionally and brutally long this year--our first decent day was Tuesday. Today was supposed to be mild but raining--but it is balmy and clear with big fluffy white clouds. Another day when the dogs and I might walk a bit. (Although maybe not. I have to run some errands and that might take what energy I've got.)

I have the windows open again today and despite the shortness of breath and mild nausea that always occur after chemo, I am buoyed by the sun and the air. No wonder people go to the beach. I liked to hike before but I didn't love it. Today, if I could, I'd spend the whole day in the air. Post-remission euphoria, I guess. My own personal parole coinciding so neatly with spring. It's supposed to rain and maybe snow a little on Saturday but next week, more mild temperatures and balmy days.

I feel a little fragile emotionally, as if this joy might give way to exhaustion. But so far it has held up and I intend to inhabit it as completely as I can. I'm feeling my way back out into the world.

Exercise

Two days I've walked down the street and back with the dogs. Two days of absolutely glorious weather. Right now I've got the windows open in the house and it's really, really spring.

A ten minute walk takes me twenty minutes and pretty much absolutely laid me out today. I came home breathless and wobbly-legged. But I don't care so much. Somehow I am psychologically moving from 'sick' to 'recovering' despite the reality of the last three chemos. I plan to keep walking and build up some strength again and everything seems bright and new.

Of course, we'll see how things go tomorrow when it rains.

My TV Movie

When the CAT scan report said that the node in my neck was still abnormal (before the doctor explained it was scar tissue, not lymphoma) I felt as if I knew this narrative. It's the TV Disease movie. The plot is discovery of disease (normal person whose life is turned upside-down) followed by grim prognosis (okay, mine wasn't grim) followed by disease appears to respond to treatment (often experimental.) Then there has to be a crisis. I told myself that abnormal node was my crisis, and that it was a lot better than the alternatives; heart failure as a result of the adriamycin, say, or pneumonia, or discovery that the disease was resistent to chemo, or infection and sepsis. I told myself that 'It's not gone yet,' was a relatively inexpensive form of movie of the week crisis. I should be pleased.

But I am a lot more pleased to discover that this is a lousy narrative for suspense. Turns out, woman has disease, woman gets cured.

I'm so glad to be boring.

And I feel better than usual after chemo because my lung tests indicated that we should probably stop the bleomycin. (My long capacity is good, but my ability to take up oxygen is at 65% of expected. This will reverse itself with time, but no sense in making it worse.) So my chemos are shorter and I feel better after them. And the weather is beautiful today. The doctor would like me to do some light exercise. I plan to take the dogs for a fifteen minute walk. We could all use it.

Remission Redux

Met with the doctor. He said the spot on the CAT scan is most likely scar tissue.

So we're back to--

(cue the music to "Tradition" from Fiddler on the Roof)

Remission! Remission!

Remission!

Seeing Friends

I saw Geoff Landis and Mary Turzillo, Pat Stansberry and Sarah Willis and a bunch of other friends all on Saturday. We've all been teaching writing workshops all around town sponsored by Cleveland State University. After whining about how changed I look, Geoff said that he was quite astonished. He'd expected to see some gray, half-dead creature and I looked great! Sarah told me she loved my wig and I looked great. (Bob told me that having cancer has actually done wonders for my appearance because now I dress better and take some care before I go out.)

So I guess I have to say that there are a lot of days when I look in the mirror and everything looks pretty good. And I have nothing but good things to say about undereye concealer.

Tomorrow is chemo #9 so I had a lot to get done this Easter day. Finished tax stuff to drop off with the accountant. Finished up some freelance work. I'm doing laundry and soon we'll be off to see my mom--I've got Easter flowers for her.

All this activity and no need for a nap. I feel positively normal!

Geoff's surgery is tomorrow. He promises to take at least six hours off afterwards. Happy Resurection Day to all of us in the cancer club.

Changes

Although to anyone else I look pretty much like Maureen, there are times I look in the mirror, with or without wig, and the face that stares back at me seems very strange. My eyebrows, while hanging in there, are very thin, and my eyelashes are mostly gone. Most of my life, although I don't go out in the sun, I've had some color. Right after chemo I'm ruddy cheeked but by week two of the cycle, I'm all one color, a kind of grayish-pale. The shadows under my eyes, always pretty dark, are darker. And I look older. Without a wig, since I'm all one color and bald, the effect is a little like a china doll head before it is painted and bewigged. If doll heads were dark under their eyes and had lines around their mouths.

I'm not a particularly vain person, but I'm not immune to vanity. I realized the other day that my raincoat, which doesn't fit me but which will fit me Any Day Now, is older than Adam and I am justified in buying a new one, whether I have really gotten all the wear out of this one that I can. I can't say I am much of a fashion and make-up maven. But aging visibly in four months is sobering. It's mortal, as in mortality, not as in elves and humans.

I know that some of this will reverse. My hair will grow back. I'll get color in my cheeks again. Some of the lines will reduce when I'm not being poisoned twice a month. I suspect that in some ways, I will be aged by the chemo and of course, all those things will come back over years, one way or another. It's one thing to know that intellectually, it's another thing to see it happening with surprising rapidity.

It's very science fictional to find that my mirror has developed the capacity to predict the future. At least some aspects of my future.

Bob is home today! We may yet get to go see Robots or something.

Pulmonary Tests

I had pulmonary tests today. I've never had breathing problems in my life. No asthma (thank God.) Nothing worse than the occasional bout of bronchitis. But one of the chemo drugs has the possible adverse affect of damaging lungs. One of the chemo drugs has a 1% chance of killing me through heart damage but luckily, that didn't happen. Before I started chemo I did a kind of benchmark test to insure my lungs were in good shape (they were.) And then a couple of weeks ago I got a virus and had breathing problems and had a second set of tests.

Today I went back to see if things were back to normal.

Breathing tests are a lot nicer than a lot of tests. Nobody needs to start an IV line for one thing. For another, there's Kenny, the pulmonary tech. Before I went to get my first test, Dr. Schnurr said, "Kenny's a good guy." And he is. He sits in a room full of breathing equipment, including a sort of phone booth looking thing where they can test the absolute capacity of your lungs. (Did that last time but not this time.)

For breathing tests I put on a nose plug and breath into a mouthpiece. The mouthpiece is basically a tube. Kenny tells me to breath normally a couple of times and then says, "Big breath IN, now blow blow blow..." and I empty my lungs while we both watch a computer screen that shows a line graph and a graph like those posters of thermometers where you keep coloring more and more in as you get more and more donations. The graphs, of course, mean something to Kenny. I just keep blowing and wonder why the line graph seems to inscribe a sort of etch a sketch circle. Breathing all of the air out of my lungs is hard. If you've ever done it, you'll know what I mean. It feels as if it is time to take a breath but I'm still blowing.

Kenny's also nice because he'll tell me how these tests compare with the last ones. On the capacity test I said I could tell I hadn't been exercising. 'You did really good,' Kenny said. Of course, he sees asthmatics and people with ephysema all day. But I knew I was in better shape than the last time. I told him I hoped to flunk the diffusion test (a test that determines how well the blood takes up gas. It's all well and good to oxygen in your lungs but if it doesn't get in your blood, lot of good it does you.) Last time I didn't do so well on diffusion and so didn't have to have bleo. He said it was better this time, but still outside normal. I laughed and said a lot of my tests were outside normal. (My CBC--blood cell counts--usually have six to eight items flagged as abnormal. And that's when they're good.) But I feel good. Not winded anymore and happy to bounce around and do things.

Maybe we'll go see Robots this weekend.

The test results have to be seen by my doctor. Chemo on Monday. Only four more to go.

Talking Book

I talked to my publisher yesterday, Gavin at Small Beer. I love calling Gavin 'my publisher' because he was at one point 'my student' and he and Kelly are 'my friends' and when Bob jokingly said last night, 'tell the publicist to contact Terry Gross at Fresh Air' I realized Gavin is also 'my publicist.' If you contact a department at Small Beer--circulation, publicity, accounting, sales, you get Gavin. Sometimes you get Kelly.

He was talking about putting together author info to set a couple of signings of Mothers & Other Monsters and he asked me if I wanted to say anything about the blog or Hodgkins. The pub date for the book is July 1, and I thought for a moment and then said, no. I don't expect to have Hodgkins, or, for that matter, to be keeping the blog. I wouldn't mind doing the whole cancer survivor thing and if he had thought there was any gain in doing it, I'd have said sure. But the book is about other things. No cancer stories in it. (And Alzheimer's story, but not cancer.) This is part of my life, but so are the five years I lived in New York City and the year I lived in China, the twelve years of raising Adam, and twelve years of marriage to Bob. Hodgkins has been hard, and may get harder still in the next seven weeks, but it, as yet, has not been the most difficult thing in my life. Part of that, of course, has been because of everyone reading this. You have all made this easier to keep in perspective and you've often made me feel good when I might not otherwise.

I don't know if I'll keep a blog after this. I might, I've really enjoyed it. But my fondest hope is to say sometime in May or June, 'well, that's a wrap.' If I want to keep a blog, I'll start a new one.

Planning

Bob has a cousin in Germany (hi Chris!) and for years we have talked about going to visit. As best I can tell, Bob and Chris are really the same person except that Bob is seven years older than Chris and Chris moved to Germany. They talk every day by computer, usually in the form of a science fiction strategy game they've been playing for well over a year. I kept thinking about it and thinking about it and a couple of weeks ago, I announced to Bob that we should plan to go to Germany in 2006.

In one sense, this goes against the big lesson I learned when I was diagnosed, which is, 'You can't plan.' But of course, it is precisely because of Hodgkins that I decided we had to go. Not because we could die any day and have missed the opportunity. I haven't learned that lesson at all. But because planning cool stuff makes uncool times bearable. This was borne out by a guy Bob works with who has cancer. 'Trips are good,' he said. And they are.

So I've fought to keep on track to go to New Mexico in May. And we'll go to Wiscon. And next year we'll go to Germany. If something comes up next year, we'll deal with it then. That's the other thing I've learned--if something comes up, you just deal with it as best you can.

Stranded

Tomorrow the car is in the shop which means I am stranded in the suburbs. It is weird how discombobulating that is. I'm not worried for health reasons. In fact, my ability to lie around the house has increased so much that there are many days I don't even make it out to check the mail. But tell me I can't have my car and all the sudden I'm thinking of all the things I should do. Get pills for the dog. Go to the grocery. I'm running low on make-up and I need to go to the mall to get what I want. (Forget that I wear make-up maybe two days out of seven and tomrrow probably isn't one of the two.)

When I was in grad school I was taking classes and teaching classes and I was always running. The lines at my bank were always long (this was in the infancy of ATMs.) One day it finally occurred to me that when I was standing in line at the bank, that was my job. To stand in line. Until I got to the teller. And that was okay. So bank lines became mini-vacations.

I tried to think of this whole Hodgkins thing as I kind of re-alignment of priorities the way bank lines are, and to some degree I have succeeded. (I think of people like Heather who are doing this and holding down a job and I just don't know how they do it.) But you know, life keeps interrupting with silly stuff like the fact I failed to get my tags renewed on my car last month. So I ran around doing that stuff today.

But tomorrow, I'm going to be stranded, at home. (Okay, my husband is having some wheels delivered by UPS so I can't nap all day.) But tomorrow, I think I'll revel in not being able to get anything done. And before someone says, 'You can write!' Well, the truth is, I can't quite remember the name of anything and have this curious, if mild aphasia. It's called chemo brain and it's described in the literature. So I'm not going to ruin the perfectly good story I started by trying to do it now.

So there. Just think of me as stranded in an airport that happens to be just like home.

Not Remission Yet

The news on the CAT Scan was good but not great. Almost all signs of disease are gone, but only almost. There's still a recalcitrant node at my collarbone.

The doctor is pleased with the CAT Scan. I, of course, am disappointed. I feel as if I have let Bob down. Ah well, the next four chemos should take care of that last bit.

A bunch of people have emailed me to tell me that when I used TAB (Temporarily Able-Bodied) in my one post, they had assumed it meant something else, like Tough-Assed Broad. That may be the highest compliment anyone has ever paid me.

Veins

(I actually posted a version of this somewhere else. But hey.)

Veins. Who knows much about their veins? I knew I had decent veins. When I went to give blood, they never had any trouble getting one, and when I started chemo, same thing.

But now, alas, my veins are letting me down. The big ones in the crooks of my arms are getting scarred. The little ones in my wrist are collapsing, the the lower arm is full of elastic wrigglers. Yesterday I went for a CAT Scan which involves putting iodine contrast in a vein.

Three technicians and seven sticks later, we had a vein that wouldn't collapse. The techs kept apologizing (as if they were somehow responsible for my poor scoured veins sounding a retreat.) They kept saying, 'If you want to stop...' but since this is the CAT Scan that I expect to verify my remission, I was damned if I was going to stop. So I kept saying, 'Go ahead,' and they kept getting a vein and then having it blow.

'I've got it...oh, no, it's blown. Sorry. We can stop.'

I thanked them and thanked them for their persistence. They were funny, thoughtful and wise. They finally got one that worked and I had my contrast and my CAT Scan.

I'm trying to think of possible vein rehabilitation exercises. One of the ways to get a vein to rise is to lightly slap the area. So my arms have been lightly slapped from stem to stern and now my neuropathic nerves are all firing. Today I'm waiting for the results of the CAT Scan but when I called in, it hadn't been put in the system yet. Still, it will be worth it, right?

Fingers crossed.

Talismans

I'm not by nature superstitious. This is not particularly anything I can claim credit for, I just don't run that way. But there are gifts I have gotten lately that have come to be talismans for me and some deeply superstitious part of me has been tapped. One of them is my El Riesco Siempre Vive hat and another is my Fuck Cancer hat. I wear my wig almost everywhere in public, but on chemo days, it's a scarf and one of the hats. I pretend that it's practical, but the truth is that when I'm wearing a gift I feel...gifted. I feel wrapped in charity, in caritas. I don't feel as if something will go wrong if I don't wear them, but I feel safer and comforted in them.

They are magic. For me that means, it turns out, that they have to be a gift. I can't go out and buy magic. Maybe I could make it on my own, but I haven't tried. My husband is a skeptic. Bob subscribes to The Skeptical Inquirer. He's a skeptic the way some people are Catholic. This isn't to say that he doesn't have his own secret talismans--he has worn a yellow Livestrong bracelet every day for months and if it isn't a comfort to him, it is certainly a comfort to me. But mostly he isn't a lucky charm kind of guy.

But even he was as blown away as I was by my new jacket. It's a jacket my by a Texas woman shaman. I'm not going to identify her by name, although the people who helped her know who she is and who they are. The feeling of magic just rolls off this jacket. It's covered, quilted in personal symbols--Chinese ideograms for health, two Ferrari's (printed on cloth, and Bob and Adam were both very psyched) cranes for longevity, butterflies, birds, blue water. I've never, ever owned anything like it in my life.

I don't know how to say thank you for the hours and care that went into this jacket. I'll get Bob to take a digital photo of it. (I keep taking it out and showing it to people.) Today, for the first day, it's warm enough that I can wear it when I go in for my CAT Scan.

A good friend of mine was wrongly fired and Cleveland writing community rose up and spontaneously started a campaign that got him re-hired. We sent letters, copies of which ended up with my friend. He said that it was a little like the scene in Tom Sawyer where the boys get to hear their own eulogies. I feel that, too. I feel as if I have been cosseted--no buffeted with caring. I wish everyone could have this feeling.

But nobody but me can have the jacket.

Freelancing

Doing some freelance work again. Last week I had no brain. This week, despite chemo on Monday, I have one, albeit a small one. Amazing how difficult it is to work. Luckily, it's not a lot of work.

Brain fatigue. I don't know how else to describe it. I sit and I work and then next thing I know, all I want to do is lie down. It's not like the usual 'I can't think of what to write' stuff, it's genuine fatigue. Ah well. I was warned.

"Go with the flow," Jeanette, my ever practical, ever reassuring oncology nurse tells me. But it makes it hard to plan. There are ebbs and flows. I am attempting to learn a zen like calm but I'm afraid I'm not very zen. I still feel pretty good overall, though.

Chemo #8, Redux

I went, my temperature was within normal range. My white blood count (it has to be 1.5 for chemo although they've given me chemo at 1.4) was 6.4. So they gave it to me. They skipped the one drug, bleomycin, but if my pulmonary results are good on 3/24, they'll give it to me in the next batch.

This morning I could go up and down stairs without trouble.

I felt so good afterwards I made Bob stop for Chinese food. Now to bed to watch bad television briefly and fall asleep.

Feeling pretty good for four cycles of chemo!

Learning Experiences, a Rant

For the first time since I was diagnosed, there are real things I have trouble doing. I get breathless coming up a flight of stairs and have to stop. So how come I am supposed to be redefining myself as a person who may no longer have cancer and yet I am unable to DO THINGS! No fever yet in about thirty-six hours so I'm on track for pulmonary tests and chemo tomorrow, but what I really want to do is go see Robots with Bob and I find myself hesitating because--get this--I'd have to climb stairs at the movie theater. I think we'd rather skip the movie than sit in the front row. I know, I know, I can take as long as I want to climb the stairs and there's no reason to be embarassed, but I've always been a TAB* before and it's hard to adjust.

That redefinition idea. When I was first diagnosed I couldn't bring myself to say I was sick, because in fact, I felt no such thing. I felt great. I was working out, I'd lost some weight. I just had this diagnosis. Then chemo zapped me into the land of the sick. I started the blog. Part of my identity became that I had cancer. My goal, of course, was for part of my identity to become a person who once had cancer and I was hoping to become a bit wiser for the experience. (My big life goal for years has been to become a Wise Woman, but I've decided that is always a work in progress.)

So now I am moving into 'person in remission' (I hope) and I'll have to learn if that means I'm always aware that I am suspended between sickness and health or if I find myself walking away from Hodgkins, optimistic that I am well. People on the Hodgkin's list serve have talked about how some can't stop checking themselves, nervously feeling for enlarged lymph nodes. I don't know what I'm going to be like. I know what I'd like to be like, but hell, I'd like to be taller.

But that's all really hard to do when I can't catch my breath. I'd stomp around except I get all out of breath when I do that. Normally I'd be taking decongestants and cold medication but my doctor wants me on a drug holiday to see if 1. I have no fever and 2. how bad toxic side effects really are without using stuff to control them. Easy for him to say. (Virtual stomp, stomp, stomp. I am stomping around, blackly here, shaking my fist impotently at fate and since this is all virtual, I don't look silly, okay?)

I used to have a button attached to my cubicle back before I married and could stop being a wage slave. It said, 'Oh No, Not Another Learning Experience.' This is probably Good For Me. It will teach me Empathy and Compassion. (Especially while driving where I have no patience for people who drive slower than me.) But like most learning experiences, I'd rather skip the experiencing part.

Stomp stomp stomp.

(*TAB: Temporarily Able Bodied. It's the opposite of disabled, and takes into account that most of us will be disabled somehow, somewhere, sometime, if we only live long enough.)

So, What's My Excuse Now?

Okay, I have been milking this cancer thing for all it's worth. As I posted, not only did I not plan to be brave, I planned to control the remote, decide what restaurant we ate at, and whine a lot. And when anyone opposed me, I could play the C card.

But now, I can see in my family's eyes, this is rapidly losing it's power. 'But I might still have cancer,' I say. 'I haven't had the CAT Scan.'

'Yeah, yeah, yeah,' they say.

I'm thinking that this 'control the world through pity' strategy may have had it's downside. May have been a little short term in my thinking. And now that I'm having a little chemo vacation, I've had no need for ativan or vicodin or compazine. And I've felt chipper. A little breathless from this virus thingy, but really chipper. Today I'm not taking any analgesics so I can show my doctor that I'm 48 hours without a fever and try to have chemo on Monday. I'll also have more pulmonary tests if I do, and if I am still showing some signs of lung issues, after Monday I won't have bleomycin (the 'B' in the ABVD chemo cocktail that's the treatment for Hodgkins.) Doctor says that since the last four chemos are just kind of clean-up, I can do fine without the bleo if I am having some toxic side effects.

But that probably means that I'll be even more chipper.

Must think of new selfish plan. I still haven't gotten anything from the Make A Wish Foundation.

101.6 degrees F.

That was my temperature yesterday--so no chemo. And I may have some mild lung damage due to one of the chemo drugs, or it may just be that I have a repiratory infection. But the chest x-rays were clear. Complete clear. As in no signs of Hodgkins.

I have a CAT Scan on Thursday, but the doctor thinks I am probably in remission. I'll find out then.

But I probably no longer have cancer. If I didn't have a temp I'd pop a bottle of champagne.

Five chemos left, the first one as soon as I've had forty-eight hours with no fever.

Chemo Day #8

I've noticed that I get short of breath rather faster than I used to, and for the last week, I've run a low fever in the afternoon and evening. So this morning I went to Cleveland Clinic for a chest x-ray and pulmonary tests. When I got to radiology they didn't have any orders for me, but hey, I guess people don't wander in off the street very often demanding chest x-rays so they didn't even call my doctor, they just did one and said they'll read it and send up the films. My pulmonary test was scheduled for 11:00 which threatened my one chance to have Bob drive me to my chemo this afternoon. (I drive myself there and then Bob picks me up and we have to go back and get my car on Friday evening. I'm usually feeling under the weather on Friday evening so I hate this.) But pulmonary took me at 10:30 and did a lot of high tech breathing exams that left me winded and coughing and sent me home by ten of eleven, well in time for Bob to pick me up. (He has a half day off today for a doctor's appointment of his own.)

I suspect we have just brought the considerable resources of the Cleveland Clinic to bear on detecting...

...a chest cold.

But I will let you all know tomorrow.

Bravery

I've made some comments pro and con on the whole issue of bravery and cancer. I don't think bravery is surviving cancer, because there is only so much anyone can do about that. And I made some comments about not wanting to work until I died. Although my kneejerk reaction is that that is bravery because it is inherently stoic. (And my reaction to the piece by The Cheerful Oncologist was further colored by the fact that I never had a job that involved a parking lot that I felt was anything other than wage slavery. If I were, say, a doctor, I might want to keep driving to work, sitting the parking lot to gather my strength, going into work because what work I did would be meaningful to myself and others. But most of my jobs involved banks and factories and writing procedures that were meant to prevent companies from being shut down by the FDA. It was, as a lot of work is, mildly soul destroying. Even teaching often feels like making sausage.)

So what do I think is brave?

In China, historically, when young women have killed themselves, because they were pregnant, or chattel of their husbands and mothers-in-law or all the historic reasons why Chinese women chose to kill themselves (including having their feet bound into four inch golden lillies) they drowned themselves in the well.

I always assumed that was because there weren't many options for killing oneself besides knives, hanging and the well, and once you threw yourself in, the well was pretty irrevocable. But I read once that one of the results of someone drowning themselves in a well was that the body in the well, unless it could be quickly retreived, contaminated the well for some time. So the suicide became an act of revenge as well as escape.

There are lots of ways to poison the well when you have cancer. My idea of bravery is, as much as possible, not to poison the well.

Facing the Day

Woke up feeling out of sorts and got more and more unhappy all morning. Tried a long hot bath and ended up miserable in the tub. Misery. Sheer, utter misery, for no reason I could explain, not even to the dogs who are the ultimate in non-judgmental.

So.

I got dressed and went downstairs and found my new watch cap which I haven't worn yet. I got it from Barth and I haven't thanked him yet--oh God, thank you Barth, thank you thank you. It is a talismanic watch cap because it says 'El Riesco Siempre Vive' which was graffitied on Vasquez's body armor in Aliens II. Vasquez is a sort of talismanic figure for me because when I married Bob I was 5'4" and 132 pounds of muscle--I was working out with weights. I was tough. And he compared me with Vasquez. Me and Vasquey, tough broads, you know?

I put on my Vasquez hat and went out to the library and picked up Jonathan Strange & Mr. Norrel and and then got myself some lunch. Then I came home shoveled off part of the back deck so that the miniature dachshund would go out. This may not sound particularly tough to you, but for a woman who had been sitting in the bathtub in a funk, for a woman who now gets winded going up a flight of stairs (curse you belomycin) it was at least something.

Remember, the brave always live. Now I'm off to read Jonathan Strange, having been completely enchanted with the first chapter.

(Thank you Barth! Thank you thank you thank you!)

TV

TV pretends to show us life. Okay, mostly it tells us to buy things. But I was watching House, my new favorite medical show about the world famous diagnostician who doesn't actually want to ever see any patients. ("Patients lie," he says. Which is stupid because even if they do, their fingernails don't. Neither does their skin color, the way they walk, or a thousand other things a good diagnostician notices. But Hugh Laurie plays Dr. House and he's fabulous, so it's like reading Spiderman comics--spider powers make no sense, but after you swallow that this is a world in which they do, everything else is fun.)

Still, Dr. House correctly diagnosed that one of his associate's father had cancer because the guy was eating a macrobiotic diet and had the blue dot tattoo on his neck for aiming radiation therapy. The guy admitted that he had metastatic lung cancer and a prognosis of three months.

Okay, I buy the blue dot. But a macrobiotic diet? Don't get me wrong, I had friends on the macrobiotic diet in the eighties (and to be honest, they looked unhealthy, but maybe being unhealthy was why they got on a macrobiotic diet in the first place.) But this guy was supposed to be a well-respected rheumatologist. I don't think macrobiotic is the cancer diet these days and I'm really not sure that a rheumatologist with three months to live would think macrobiotics was going to add significantly to quantity or quality of life. And they were eating at the hospital cafeteria. Not a hot bed of sprouts and brown rice, right?

I don't know what is a good cancer diet other than women with estrogen-sensitive cancers should avoid meats with added hormones. And I've heard that dairy can affect certain cancers (which again, makes sense because milk is a substance whose purpose is to help a cow gain a half ton of weight in a year--milk naturally has hormones in it.) I figure House defaulted to macrobiotic because it was a kind of short hand. Macrobiotic = extreme + healthy.

I think that there are ways to eat more healthy when you're sick. But as usual, TV has failed to tell me what they are. So it's back to lots of fruits and veggies and anti-oxidants. And maybe some Hagaan Daz now and then.

Cranky

For the last ten days or so, every evening I run a fever. I have strict instructions to call the doctor the moment my temperature reaches 100.5 degrees F. I never do, I hover around 100 degrees F., take two ibuprofen, and the next morning my temperature has dropped (although rarely anymore does it drop to the vicinity of 96.4 degrees which is where I have discovered I normally run.) I'm going to ask about this next time I go see the doctor because about the time I think I need a couple of ibuprofen and take my temperature, I start having chills. And I feel bad. Just about the time I feel bad, Bob gets home.

This is genuinely not fair to him. The last thing he needs after a day of work is a wife who is unhappy.

In a way, having a bit of a chill is a nice change because I don't seem to be having hot flashes as much anymore. And you know, I don't think I'd notice any of this nearly as much if I wasn't sitting around thinking about how I feel all the time.

I'm thinking I'm going to have to get out and walk for ten or fifteen minutes every day even if it's snowing, but I suspect I won't do that. I don't feel up to any sort of genuine exercise routine because my arms hurt. But I guess I could put on Nina Simone and march in place a bit. It would entertain the dogs.

There's a place that just opened in town that does tai chi, yoga, and a couple of other things. It looks a little New Age, except that it's in a storefront. So think New Age on the cheap. But I'd love to try yoga. Kate, a friend of mine, and I are going to check it out.

Wigmania

Adam rocks the wig.





And Jason, his friend the Marine (home on leave before he deploys) shows the sweet side of the U.S. Military.

Adam's Back at School

Adam and his dad are just leaving for the five hour drive to Rochester Institute of Technology. I hate not doing half the driving. (Before Bob and I alternated--one time he made the trip, one time I made the trip.) Adam won't be back until the end of the school year. May 21 in his case.

By then, I should be finished with chemo and getting better every day. I can't wait.

Weird Chemo Effects

My nose started running occasionally. I wasn't stuffed up, but when it ran, it was tissue time, now. I thought I was getting a cold (oh those dreaded lack of neutriphil/white cells) but nothing materialized. Finally someone said something on the Hodgkin's list serve and the lightbulb went on.

Mucus flow in the nose is controlled by tiny hairs. And I've lost most of mine due to chemo. Like I'd ever thought about nose hairs.

Another weird chemo effect, or cancer effect, sort of, was that I started keeping this blog. And the infection is spreading through my family. The difference is, what Bill does is interesting.

Medical Status

My next chemo is chemo #8. That's technically four cycles of chemo, after which point, for my stage and characteristics, I either have radiation treatment or four more chemos. So on Thursday, March 10, I have chemo #8 and I do a pulmonary function test because I tend to get a bit short of breath these days, (Characteristic of bleomycin, one of the four chemo drugs.) Then, in a week and a half after that, I get a staging CT Scan, to see where the disease is.

The doctor and I have decided that four more chemos is better in my case than radiation. (If you are curious as to why, it's because my mediastinal mass--the tumor against my aorta--was fairly small, and I had pinpricks of activity in my pelvis as well as the lymph nodes around my collar bone. The radiation would be focused on the mediastinal mass and the lymph nodes around the collar bone, whereas chemo goes everywhere. The pinpricks are probably long blasted into chemo sludge, but given that both treatments seem to have the same outcome, why not continue blasting?) This is what I asked for but I admit, I wouldn't have been unhappy if the doctor had said I should have radiation. The effects of chemo are cumulative and I am feeling the accumulation. I don't look forward to the next four.

On the other hand, radiation has its own side effects.

But I am in the home stretch.

Following the Recipe

I don't eat pork or beef anymore. Chicken and fish and turkey. I went looking for something different today and decided turkey sausage would at least taste a little different. I haven't been cooking for awhile because I haven't felt like looking at food, but today I was in the mood. Something quick and simple.

There's a site called Epicurious.com where there are recipes from Gourmet, Bon Apetite and Shape Magazines and I went there and plugged turkey sausage into the search engine. Up came turkey sausage and onions and peppers. I've never cooked sausage with onions and peppers before, although I've eaten it often enough. Always good to have a recipe. I immediately flashed back to those New York City hot dogs with the onions on them. I don't like hot dogs, but oh those onions. The recipe wasn't for sandwiches but there was nothing to say I couldn't put the mess on a bun, right?

The recipe called for boiling the sausage and then adding the onion and pepper and some fennel, boiling away the liquid and finishing the dish with scallions. I don't eat scallions much these days because I have no immune system. So I decided to omit them. And I don't like fennel. Tastes like licorice and I didn't get the licorice gene. Bob did, but he's not cooking.

And to be honest, I'm not much for boiled vegetables, even if you boil them in chicken broth. So I roasted a red pepper. How do you roast a red pepper? It's very atavistic, at least on a gas stove. I just put the raw, whole pepper on the gas burner and let the skin char. You can also put it under a broiler, but I like to stand there, flaming the sucker, turning it so all four sides get really blackened. Then put it in a brown paper lunch bag for ten minutes to steam. Then just rub the blackened skin off and you have roasted red pepper. Something happens to a pepper when you roast it, something about the natural sugars in the vegetable, making the flavor sweeter and more intense.

I sliced the onions and poured some of my new, cool Lebanese olive oil in my big skillet. We eat a lot at a place called the Chicago Deli and the family that owns it is Lebanese. They have cousins back in Lebanon who press their own olive oil. We bought a gallon because George gave us some to taste and and it was great. Light, fruity, not commercial. I sliced the onions and I cooked them in the olive oil on low heat for over an hour, so they softened and carmelized. The last half hour I threw in some garlic (okay, it's not in the original recipe, but garlic, onion and olive oil? How bad could it be?) and tucked the sausages in the slow cooking onions and put in the peppers.

The sausages didn't get as brown as I like, so I ran them under the broiler until the skins got crispy. I slit the buns, put a little brown mustard on them (not in the recipe but mustard is a good thing, right?) covered the sausages with the onions, peppers and garlic, and served it all with a salad.

They turned out good. Recipe works great. I recommend it.

Illness Brings Out the Worst, Doesn't It

Hodgkins is making me a bigger slug than I already was. I have a persistent ache in my arms from chemo and I allow it to keep me from doing things.

If I am still, the ache is less. (If I take ibuprofen or vicodin, it's less, too.) I wake up in the morning with very little ache and go to bed with quite a bit of ache. So I don't do things. I avoid unloading the dishwasher because I have to reach up to put the coffee mugs on the shelf and that might make the ache worse. I don't know that it does. And Bob can tell you I hate to unload the dishwasher anyway, so this is a self-serving avoidance. I don't take out the garbage much anymore because lifting the bag might make me ache worse. I could experiment and see what does and doesn't make me ache, but the downside to that is obvious.

Periodically I decide I am going to be stoic and do the things I normally do, only with naps. I don't announce this because, well, announcing it doesn't seem very stoic, does it, and besides, I haven't admitted to anyone that I'm wimping around. This morning I unloaded the dishwasher and took out the garbage. The problem is, now I want a medal for being stoic. But since I haven't told anyone I'm being stoic, and in fact, haven't even told them that I think I might ache more if I do these things, and since, really, unloading the dishwasher isn't normally a heroic task, chances are Bob will not come home, look at me with admiring eyes and compliment me on my strength of character.

By tonight, I'll have gotten over my stoicism anyway. And I'll be back to quietly avoiding things I think might possibly cause me discomfort in some way.

And since we've gotten eight inches of snow in the last twenty-four hours, that includes almost any task that involves leaving the house. I'm pretty sure cold makes me ache.

An Issue of Character

Ted gave me a link to a blog called The Cheerful Oncologist. I was really grateful because I was curious about why anyone would make oncology their specialty and here at least I could read one guy talking about why he did it. He had an entry called Facing Your Own Death in which he talked about a patient with pancreatic cancer who worked until two days before he died. It seemed very admirable, but it has bothered me immensely since I read it. I know that if this were some disease with a more pessismistic prognosis, I wouldn't want to work until two days before I died.

To give some context, Dr. Hildreth isn't talking about the sanctity of the job, but about refusing to concede. From the entry:

St. Francis of Assisi, while hoeing his garden one sunny afternoon, was asked what he would do if he were suddenly to learn that he would die before sunset that very day. He replied, "I would finish hoeing my garden." This too was Mark's answer to the Spectre: "I shall keep living my life on my terms until I feel the grasp of your cold hand." He continued to drive himself to work. After arriving at the office he would rest for several minutes, gathering the strength to get out of his car and walk. Emaciated, with a faltering voice, he carried his load day after day, until he finally collapsed. Mark died two days after his last day at work.

I guess this goes back to the whole issue of being brave, but if I have only so much energy, I'm going to concede that. And I'm not going to waste it sitting in a parking lot. I might waste it on bad television. I might waste it on whining. I'd like to think that I'd clean out the linen closet and get my will in order. But I'm going to pick my battles and try to spend time driving Bob crazy rather than, say, teaching a fiction course at John Carroll University.

I have a different idea of a good death and it involves lots of pain medication and and time spent with friends and family. I know already that I'm not always rising to this occassion with good grace and great fortitude. I would like to, but sometimes I think it's okay if I don't. And it's okay if Bob doesn't, either. Most of the time he is, but the times that he isn't? Well, that just lets me off the hook for not being perfect.