A Sad Day On Earth

Tonight I'm crying, because cancer has taken one of the very best. Molly Ivins was the first columnist I ever loved. This is such an enormous and heartbreaking loss.

Carping the Diem Forever

I woke up this morning with a dull ache behind my sternum, right where the grapefruit-sized mediastinal mass used to be. Or maybe still is; I don't know. The pain could be from trying to do too many pushups yesterday, or it could be that the tumor is growing again, pressing hard against my breast bone.

Also, for the past few days I've had an annoying little hacking cough. It might just be from postnasal drip caused by the cold weather. Or it might be the tumor pushing against my lungs and esophagus again. Oh, and this mild headache that's been lurking in the background all week? It might be tension about the CT scans tomorrow, or it might be a brain tumor. And the drenching night sweats could be hot flashes from the chemo induced menopause, or they could be a symptom of recurring lymphoma. I don't know, I don't know, I don't know.

And the thing is, this worrisome not knowing is going to be my reality for the rest of my life. Every little ache or swelling or cough or symptom could be the cancer flaring up. Or, it could be nothing. I realize I'm going to have to find a way to coexist with this perennial uncertainty without constantly freaking myself out. Whether I have two months to live or another 25 years, I really don't want to spend them doing Lamaze breathing into a paper bag.

But you know, it occurs to me that I actually have some practice in living like this. I mean, think about it. I currently live on the Gulf coast, smack dab in the heart of hurricane country. And I lived in California for almost 30 years, only a few miles from the dreaded Hayward fault. Every time there was a rumble that rattled my window panes, I had to wonder: Is this The Big One, or is it just a large truck passing by?

I remember well how jumpy we all were right after the big quake of '89. I remember sitting through a long tedious meeting a few days after the earthquake. Boredom made me fidgety and I started unconsciously jiggling my leg, causing the table to vibrate a little. Two seconds later I was sitting there all alone: my colleagues had all dived beneath the trembling table in a collective panic.

But as the weeks and months and years went by, our hair-trigger panic subsided and we went back to being our normal blasé selves about the inevitable. Sure, there's a huge probability that all the skyscrapers and freeways could collapse and burst into flames any minute now, killing us all in 30 seconds, without warning. But so what? We didn't let our state's prognosis harsh our mellow. Life was still good, the world was still beautiful, and we were all about the whole crazy carpe diem business anyway.

And now I guess that's kind of the way the rest of my life is going to be. I'll be insanely jumpy for a while, but it may become easier with time. I'll always be fully aware that I've got one metaphorical foot poised precipitously on a crumbling levee while the other one balances precariously on a volatile fault line. Always aware of the risks, not denying the grave reality, but at the same time still sane enough to feed the dogs, prune the roses, and happily count the days until Mardi Gras.


Twenty days and counting

Onward

This is what a person who survived chemotherapy looks like.

So. Ok. What next? On February 1st I'll undergo a set of CT scans: neck, chest, abdomen, and pelvis. I'll get the results on February 6th. Until then, I'm in a state of suspended animation, not knowing what the next step in my treatment will be. Not knowing if I'm well or if the cancer is still growing.

If the scans look good, I'll move on to maintenance Rituxan which will last up to two years if all goes well. Rituxan is one of the new targeted wonder drugs that only kills CD-20 positive lymphoma cells without all the evil side effects. So I won't throw up or have gut drama, my hair can grow back, my muscles can rebuild, my puffy moon face will go back to normal. It's a type of ongoing chemotherapy that I can live with.

If the scans are questionable, we'll probably wait a few weeks then do a PET scan and possibly a biopsy, depending on where the residual tumors are. If the scans are clearly disastrous, then the next step will probably be radiation or a stem cell transplant, and I don't even want to think about that right now. It's a grim prospect, but at least it's another tool in the box.

Anyway, for the next ten days, rather than worrying myself sick with scanxiety, I'm just going to concentrate on healing. Resting, sleeping, eating well, slowly increasing my activity, maybe starting some light resistance training. I'm going to try to meditate or levitate or whatever it takes to stay calm and low-stress and living in the moment. That's all I can do.

My sincerest thanks to all of you, friends, family, and total strangers, who have been so kind and supportive throughout this horrendous ordeal. I couldn't have done it without you.


Still hanging in there!

Holy Frickin Fecal Matter!

Ay yi yi! Check out this delightfully squicky medical horror story over at Kevin M.D.'s blog, a cautionary tale of Guide Wires Gone Wild.

A 40-year-old man with Crohn's disease underwent an uncomplicated operation involving lysis of adhesions that were causing intestinal obstruction. After surgery, a cardiologist inserted a central venous catheter through the left subclavian vein. No problems with catheterization were noted. Three weeks later, after discharge, mild pain and edema developed in the patient's right lower leg. He was treated with antibiotics for 1 week, and his symptoms diminished. Six months after the operation, the patient presented with posterior cervical pain. A guide wire, presumably lost during the insertion of the central venous catheter, was protruding from the back of his neck...[!!!]

Creepy guide wire stories always hold a special intrigue for me. Do y'all remember back when my chemo port was implanted, a piece of one of the guide wires broke off during surgery? A high-speed chase ensued, with a crack team of radiologists in hot pursuit of the fugitive wire as it galloped amok through my veins. In my case the hotshot docs located it and pulled it out through a hole in my groin. (What exactly is the difference between a groin and a loin anyway?) But nobody bothered to remove the broken guide wire from this poor man, and six months later the damn thing poked right out through the back of his neck:



I tell you what, it's a damn good thing I don't have any hair right now or it would have stood itself straight up on end and burst into flames just from looking at that photo.

Incidentally, I got the bill for my port surgery in the mail the other day. The anesthesiologist who administered the twilight charged me $520; the prepubescent resident who performed the port installation and broke the guide wire charged $54; and the crack team of radiologists called in to remove the renegade wire charged a whopping $2,241. I was going to complain about this exorbitant wire removal fee, but now I'm suddenly inclined to send them flowers instead.

Truth Is A Bitter Pill

Once you've been diagnosed with cancer, you know what it's like to have the rug suddenly yanked out from under you, to just be happily living your life when without warning the bottom drops out. Maybe you land on your feet and maybe you don't. But always, always you're acutely aware that it could happen again, any time.

Now it's happened again: the dream of my very own tiny cottage is gone. It turns out the lot next door to the designated driver was never really available. I was under the mistaken impression that I was going to be able to buy it from him, but I've learned that in his divorce settlement that lot went to his son. It's not available for me to buy, and I can't build anything permanent on it. The whole dream was a carefully nurtured lie.

The designated driver didn't tell me the truth, because, he says, "I know, and I've known, that we would have to work this out--but I have admittedly feared talking about it. I want to keep this momentum up by which you are making strides toward a return to a life full of hope and future promise." He was trying to protect me from the unpleasant truth, since my hopes and dreams of the cottage were what kept me going. But I pressed the issue, and now the truth is out. There will no dream cottage. The "life full of hope and future promise" was an intentionally constructed illusion, and I was stupid enough to fall for it.

I'm totally devastated right now, and I have no idea where I'll live or what will become of me.

Field Trip!

For the first time in many months, I ventured away from home this weekend. My handsome brilliant son and I drove over to Mr. Designated Driver's amazing house, which is a terrifying 90 minutes away. I was full of anxiety about the road trip: what if I was beset by intestinal dramas? What if I encountered deadly infectious organisms? What if there was so much excitement I dropped dead of exhaustion?

But none of that happened, and I had a fabulously revitalizing time.


Like me, Mr. DD surrounds himself with color.


Unlike me, he makes his own colorful paintings.


We had a blast. My kid and I took turns banging on Mr. Man's drums.


Here's me doing my famous Gene Krupa imitation. I totally rock.


Mr. DD's hound dog kd got hold of my wig and was running around the house wildly shaking it like a dead rabbit, which was terribly hilarious, but after a while it was getting kind of soggy so I let Elvis borrow it to keep it out of her reach.


It was a gloomy dreary winter day, but we went out and walked around the lot where my teeny tiny cottage will go.


The little cottage will fit right in the middle of this ring of trees, sort of where that leaf pile is.


I'm dreaming of a teeny tiny car to go with my teeny tiny cottage.


In the afternoon we took my handsome brilliant son on a devastation tour of New Orleans, then had coffee and hot fresh beignets at Cafe Du Monde. Powdered sugar got all over the Designated Driver! This was my first time eating in a restaurant since I started chemotherapy last October. I figured it was ok since the beignets were piping hot out of the deep fryer and the coffee was in disposable cups. Fortunately none of the filthy pigeons landed on our table.

It was a wonderful weekend. I'm tired, but happy and more energized in the spirit than I've been in ages. The countdown continues: Five more days and the chemo is FINISHED!!! And then, the great merciful noodly FSM willing, I'll be back to having new adventures every single day. Hang on, it won't be long.

PSA

I received a notice in the mail yesterday that I have been scheduled for three sets of CT scans on February 1st, to find out if the six sessions of chemo have conquered my tumors. These will include scans of my chest, abdomen, pelvis, and neck. With contrast.

That means of course that I will have to glug down two bottles of the hideous chalky milky nauseating contrast medium stuff exactly one week after my final chemotherapy session. Oh please do stay tuned for that, it should be just all kinds of fun and excitement. But if you had plans to be anywhere near the radiology waiting room at Our Lady of the Damned on that day, I seriously advise you to think about canceling. It's not going to be pretty.

Anyway, I'm not sure why the oncologist prefers the CT scans to a PET scan. Possibly because a PET scan runs about $5,000 while the full series of CT scans will only cost around $800. But it may also be because I already have baseline CT scans of my tumors before treatment, whereas I've never had a PET scan yet. And I've read that some radiologists do prefer CT scans over PET scans for my type of tumor because the PETs tend to produce a lot of false positives. But then so do the CT scans. So who knows.

I'll have the scans on Thursday February 1st, then I'll get the results at my next oncology clinic appointment which is Tuesday February 6th. This is where the PSA comes in. The acronym "PSA" conveniently stands for both pre-scan anxiety, and post-scan anxiety, to cover all the days in between now and the moment when some 12 year old resident I've never seen before in my life tells me whether or not the deadly cancer cells are still lurking in my body. These are the days when molars are ground to dust, fingernails are gnawed to bloody stubs, and much quality time spent bonding with comforting old pals like Ben and Jerry. If I had any hair, I would probably be giving myself compulsive trims at midnight.

If the news is bad it will be extremely disappointing and discouraging, but it's far from the end of the line. There are still a bunch of promising tools in my toolbox, aggressive and miserable but potentially effective options. I've done lots of research and I'm prepared to deal assertively with whatever they throw at me. But right now I'm just focusing on getting myself through the next two weeks with all my faculties intact, even if that means curling up under my desk with a box of Ring Dings and the complete Patsy Cline box set. Y'all are welcome to crawl up under here with me, if you're so inclined.

A Cryogenic Day In Deep Inferno

Are y'all freezing where you are? We're dying here. It's not such a big deal that it's been 36 degrees and raining outside all day; the big deal is that it's been 36 degrees and damp and gloomy inside. (Please keep this information to yourselves; we don't want to be scaring away potential house buyers.)

So my brilliant handsome son who lives in Ohio is visiting me for the week, telecommuting to work every day from my dining room, and even he is freezing. My dining room is colder than Ohio! Even sitting at a table right next to the charming antique floor furnace, he has to wear those hi-tech thermal undergarments from REI, you know the kind people wear when they backpack across Antarctica, and huge woolen gloves from the polar hunting department at the Wal-Mart:



The poor dogs are huddled over the furnace in their little Irish fisherman sweaters:



And don't even ask what I'm wearing. This weather is just ridiculous.

But you know what? I mean speaking of weather, and going outdoors and stuff? It just occurred to me that since I'm ending chemotherapy early, I'm going to be able to prune my roses in February after all! I thought I wouldn't, because as long as I'm in chemo I'm not allowed to work in the garden or even with house plants, no going near soil or thorns, on account of the microorganisms that might attack my compromised immune system. If I'd done all eight weeks, I wouldn't have finished treatment until mid March, too late to prune here.

I'm going to be leaving a lot of roses behind when I sell the house, and I'm ok with that. But I'm not ok with not pruning them before I go. I think I actually have a strong compulsive inborn biological drive to prune my roses, and it kicks in full force on February first. If I couldn't prune when the season rolls around, I'd probably go mad, like a migratory beast trapped pacing in a cage, or a deranged Labrador retriever whose tennis ball got stuck behind the refrigerator.

Anyway, since I'll probably have to prune a week or two late, this miserable cold snap is good because it'll keep them in a deeper dormancy just a little bit longer.

Shit. Do you have any idea how good it's going to feel to get back in the garden? To pull weeds, and prune roses, and slosh my hands around in rich crumbly manure? How heavenly it will taste to eat a fresh crisp apple, or a sweet juicy strawberry; how wonderful to go back to the gym and feel my body stretching and moving and flexing again? To go to parties? To watch the parades? To start growing hair? All the little pleasures I've always taken for granted. But I swear I never, ever, ever will again.

The Scream

So I had an oncology clinic appointment this morning, and I was all geared up to challenge the head oncologist at Our Lady of the Damned. I had done my research and I was prepared to go to the mat if I had to. My plan was to demand that I stop chemo and have a PET scan after six treatments instead of completing all eight that he had recommended. I was all set to earn my wings as an Advanced Assertive Cancer Patient. I was going to pin the dude to the fucking wall.

Here's the letter I had written outlining my position:

Dr. Oncologist:

I would like to stop R-CHOP after the sixth treatment on January 25th.

I have not been able to find any evidence in the medical literature to indicate that the benefit of extending treatment to eight sessions outweighs the considerable risks. There are indications that any malignant cells surviving six sessions of R-CHOP are most likely refractory so that extending more of the same treatment for six additional weeks would be a dangerous waste of time.

I would like to schedule a PET scan as soon as possible after the sixth treatment. If the scan looks good, then I will proceed with maintenance Rituxan; if not, other options must be considered, including wait & watch, radiation, autologous stem cell transplant, etc.

Thanks very much.

Lymphopo DuDamned

I was expecting some resistance from The Man. By the time they called my name over the PA, I was raring to fight. My jaw was locked in a fierce bulldog underbite, my eyes were bulging, I had steam pouring out of my ears. Snorting and pawing the dirt like El Toro, I all but had a bright red Question Authority bumper sticker plastered across my forehead.

Unfortunately, I was scheduled to see my favorite resident, the one who actually treats me like a human being, who pays attention and listens to what I say. This is a nice young man and I sincerely hoped he wouldn't be injured in the crossfire. After he'd inquired politely about my knitting and my bench press numbers, I hissed and fluttered my letter in his face. He looked it over. "No problem, " he said. "I'll just go run this by Dr. Onc."

A few minutes later the oncologist himself came into the exam room and introduced himself to me. What an honor, after six months I finally get to meet my own doctor! We shook hands, then I rolled up my sleeves, flexed my biceps, and sneered menacingly. I drew a line in the sand and started to speak.

"There is no evidence..." I began.

"Eight sessions are not more efficacious than six," he interrupted.

"No," I snarled, baring my teeth. "They're not." I blinked. The ear steam was beginning to blister my eyelids.

"Indeed they're not," he concurred. "I have no idea why you were originally scheduled for eight. You're one sharp cookie to catch that."

Excuse me? One sharp what??

Um. Oh. Yeah. Ok!

The friendly resident smiled and nodded.

So this wasn't exactly going as I'd planned. What the hell was I supposed to do with all that rabid foam that had accumulated in the corners of my mouth? I glanced around surreptitiously for a paper towel dispenser.

"I take it you have a computer," Dr. Onc continued with a sigh of resignation. (You've got to hand it to him, he's one sharp cookie himself to deduce that my letter hadn't been written by hand.) "We like it when our patients are smarter than we are," he lied.

Then he narrowed his eyes shrewdly and tossed his gauntlet into the mud at my feet. Ah, this was more like it. I arched one eyebrow and waited expectantly.

He issued the ultimate challenge: "Are you CD-20 positive?" he demanded.

I suppose he hoped I'd crumble, I'd succumb to confusion, I'd stutter and ask what the hell he was talking about, or maybe start babbling incoherently about my CD collection at home. But I didn't miss a beat. "Yes," I said. "I am." Hey, I didn't spend $150 buying copies of my own medical records for nothing; I know what kind of genetic profile I have. He flashed me a sportsmanlike smile of defeat. "Yes, you are," he conceded. "So we'll schedule a scan after the next treatment, then for two years you'll do maintenance Rituxan and we'll restage and scan you every six months. After two years with no evidence of disease we'll declare you cured. Any questions?"

I let out a whoop and flung my arms around his neck with what may have been excessive zeal. The poor man staggered backwards, muttering "Nnnghhhnhzh!" and fled the scene. Victory was mine.

Do y'all understand what this means? Nine days from now I will be FINISHED with chemotherapy. Nine more days! Finished!

Halle-fucking-lujah. Let the countdown begin.


The author shrieks with unrestrained optimism.

How To Love A Traitor

Zuzu has a recent post up at Feministe titled Wonderful, Glorious Me in which she issues an interesting challenge:

We’re conditioned, particularly as women, to be self-deprecating, to not take up space, to not revel in our bodies and ourselves. We can get 150 comments in a thread about when we realized that we were aware our bodies weren’t up to snuff; let’s see how many we can generate praising ourselves.

Your mission: list at least five things you love about your body and yourself. Five is the floor; you can always do more. And no self-deprecation! No offsetting a compliment with a dig.

As I read through the lists people posted in the comments, I couldn't help but notice how many women said they loved their bodies because they're strong and healthy and sexually attractive. They love things like their lovely mouths, their hour glass figures, their beautiful breasts, their adorable curves, their perfect posture, their strong legs, their awesome hair. They love being able to run marathons and climb mountains and be great in bed.

And I couldn't help but wonder: what if they didn't have these things any more? What would happen to that love if their youth and health and vitality went away? Would they still find something to love? What will happen to them if the day ever comes when their hair falls out, their breast are cut off or wither from age, their bodies grow old or sick, their faces or limbs are maimed and disfigured? Will they find a way to go on loving bodies that have broken down and betrayed them?

Will I?

A year ago, coming up with five lovable traits about my own body would have been a piece of cake for me. I was strong and healthy, sexy, athletic, graceful and able, and my body was a fabulous source of pleasure to me.

Now my body is no longer strong or healthy. I have no hair, my muscles are weak and shriveled, my skin is mottled and my face swollen up like the moon. My spine is twisted and collapsing; I have a hideous protruding chemo port surgically implanted in my chest wall. I'm itchy and bloated, I soak the bed with night sweats, my brain is slow and depressed. My body isn't even capable of feeling much pleasure these days. It's mostly just a source of pain and nausea and bone grinding fatigue. On top of all that, it causes me constant anxiety: every little ache or cough or swelling might be the cancer spreading somewhere else. My body has become unreliable, untrustworthy, endlessly worrisome.

For 52 years I took such good care of my body, and then one day it turned against me. What can I possibly find to love about it now? I'm sorry, but I honestly can't come up with five things.

But I can come up with one thing that I love about my body today, and it's this: I love my body just because, against all odds, it's still alive. It's hanging in there, kicking and screaming, surviving the cancer and enduring the chemotherapy. And in spite of being under full-blown attack, it still manages to muster the resources to take care of trivial domestic incidents like healing a cut or preventing a cold. My body has suffered so much damage and pain in the last six months, yet it's never given up. Plenty of times my mind has given up, my soul has given up, my broken spirit has wanted to throw in the towel and quit. But my body has steadfastly refused to stop living. It just kept on going, and dragged the rest of me along with it.

And today, for that, I love it.

Spare Change

In my tarot reading this morning (yes, major woo alert!), I pulled the Five of Cups.

The Five of Cups is about loss. On this card, we see a figure draped in black and covered in grief. He so dominates the card that it is hard to look beyond him. The Five of Cups refers to that time when the pain of a loss is most acute. This man is looking only at the overturned cups in front of him. For now, he cannot acknowledge the two cups that are still standing. Later, when he has healed somewhat, he will be able to see all that remains.

In readings, the Five of Cups can alert you to the possibility of a loss and its associated emotions - sorrow, regret, denial. The loss could be great or small. It could be tangible (money, possession, relationship, work), or intangible (dream, opportunity, prospect, reputation).

Well, woo or not (I actually think of the tarot as a free association Rorschach inkblot test rather than predictive woo), this is certainly trumpeting the obvious. But the reading goes on to say:

You may feel discouraged by this card, but it does have a positive side. Every loss opens new possibilities for growth because every loss initiates change.

Yes, loss does initiate change. And sometimes that change, although accompanied by deep pain and grief, can end up being for the better.

So I'm going to have to sell my beloved house. Major loss; big grief. But on the bright side, I'm actually happier than I'd ever have expected about the prospect of building my tiny dream cottage on the lot next door to Mr. Designated Driver. In fact, happy dreams of this simple, sunny, cozy, uncluttered, low maintenance, well-insulated, tiny cottage have often been the only thing that could pull me out of the Big Ick, the main source of motivation to keep me slogging onward through this hideous hellish nightmare.

Let me show you a little bit about what I'm planning and dreaming.

Here are some photos I took last summer of my designated driver in his double-lot yard. At the time I was more intent on photographing the beautiful man than his property, but you can see a bit of the lot next to his house where I'm planning to build.


My cottage will be nestled among the trees on the land visible behind the swing. By the way, my designated driver built this swing, and the shed in the background. And every deck, fence, and other structure in these photos. The man can swing a tool!


He built this deck, and the studio behind it.







Mr. DD's house and his adjacent lot are located about 90 miles from where I'm living now. They are in a rural area on the edge of a small town not far from the state's capital and major university, and just a little over an hour from what used to be one of the most magnificent cities on earth. And will be again some day.

Ok, so now you've got an idea of the setting, the vegetation, the deliciously handsome and talented neighbor. Next, imagine a tiny cottage, much like this rendering, nestled among those trees:



This little starter cottage is only 14' x 24' and can be built for under $20K. It's based on these plans:



We'll probably start with something basic like this, which should be easy to pass through the permit process and quick to get into move-in condition. Then, as time and money allow, we can add on various nooks and crannies and porches and decks and so forth.

Here are some photos of actual cottages other people have built using this plan:





And here is the web site of a remarkable young woman named Heather who built one of these cottages for herself at the age of 17:


Heather's house


Heather building her floor joists

So this is my dream, the thing that fans my spark just a little faster than the chemo can extinguish it.

You know it's funny, I remember back when I was a naive and dreamy-eyed youth, I thought it was just about the sickest thing on earth that my parents, in their dotage, had decided to have separate bedrooms. I saw this as a sign that their marriage was a failure and a sham, and that they were dour and dried up, tragically devoid of passion and romance. But now I think it was one of the sanest things they ever did. In my own dotage, I not only can't imagine not having a room of my own, I can't bear the thought of not having a separate place of my own. And a tiny cottage of my very own, right next door to Mr. Man, seems like the perfect solution.

Oh, don't worry, once the damn chemo is over, the tiny cottage and its genesis will have a brand new blog of its very own. Real soon. Stay tuned.

It's My Cancer and I'll Flip If I Want To

I can't believe this: I'm hungry again. Not just bored hungry, not just a little case of the munchies hungry, but serious, stomach rumbling, light headed, blood glucose plummeting HUNGRY. Again. Hell, I just ate.

I try to eat a healthy, balanced, protein rich meal approximately every two hours while I'm awake, and yet I always seem to be starving. Even when I'm in the throes of the Big Ick, even when I'm riddled with mouth sores and throwing up every fifteen minutes, I'm hungry. It's a lot like pregnancy, where my body is convinced that the nausea would go away if only I could satisfy some grotesquely weird craving, the proverbial pickles-and-ice-cream thing.

So I'm frequently cursed with a rabid craving for exceedingly unfortunate combinations, nasty things like greasy take-out andouille fried rice from the Asian Cajun Drive-Thru served with sardines and Tang. (Yeesh, just reading that sentence would probably drive poor Alice Waters to commit seppuku.) Kowtowing to a bizarre craving works for about ten minutes, after which the nausea resumes full force and I can never bear to look at or even think about those hideous ingredients again for the rest of eternity.

But none of that stops me from being stark raving, foaming at the mouth HUNGRY. All the fricking time.

As many of you have probably guessed by now, this is the Prednisone talking. I take 100 mg of Prednisone, a synthetic corticosteroid, for the first five days of every three week chemotherapy cycle. I take it for its anti-inflammatory and tumor shrinking benefits, but I also get saddled with a shitload of its nasty side effects, including but not limited to: immunosuppression, slow healing, catabolism, fatigue, severe insomnia, depression, indigestion, edema, aching joints, muscle pains, restless legs, facial swelling, and, yes! a dramatic increase in appetite.


Facial swelling: the typical goofy Prednisone moon face. (Falling off the fashion grid is also, apparently, a lesser-known side effect.)

Although most folks associate cancer with skeletal weight loss and wasting away, it's not uncommon for cancer patients taking Prednisone and/or hormonal treatments during first-line chemotherapy to rapidly gain a huge amount of unwanted weight. I've read on various lymphoma support boards about people who gained fifty unwanted pounds or more during four months of chemo. Many breast cancer patients have it even worse. This kind of weight increase results not only from adding body fat, but is exacerbated by the loss of lean muscle caused by catabolic drugs (i.e., Prednisone) and extensive inactivity.

Recent medical evidence indicates that even moderate weight gain may be associated with an increase in relapse and cancer-related deaths:

Women who gained only a moderate amount--on average about six pounds--were 35 percent more likely to die from cancer than those who maintained their weight. Women who gained larger amounts, averaging about 17 pounds, were 64 percent more likely to die from cancer.

So there's this uncomfortable dilemma: gaining weight may kill you, but the drugs that are supposed to be saving you do their damnedest to force you to eat yourself to death by packing on excess adipose tissue, which stores excessive toxins from the chemo and so forth. It's an ongoing struggle.

Ok. I'm well aware that the whole topic of weight is a touchy and reactive subject for many people. Let me make it clear that my first priority is and has long been optimal nutrition for good health, not being fashionably thin. My motto is: "I don't want to be skinny; I want to be strong."

Now with that in mind let me tell you a story. Before I had cancer, back in the days when I was a dedicated athlete, I used to frequent an online fitness nutrition and weight lifting board. I learned a lot there because the extremely knowledgeable owner of the board demanded rigorous peer-reviewed scientific studies backing every claim. Unlike the majority of the bodybuilding and fitness boards out there, it wasn't all about anabolic drugs, and there was no tolerance for silly woo, blind tradition, superstition, spam, or bullshit product shilling. It was about achieving excellence in fitness and athleticism through sound knowledge of physiology, kinesthetics, molecular biology, and other relevant branches of evidence.

Granted, there was a pervasive amount of adolescent macho posturing, sexism, racism, and porn worship. But I managed to minimize these blights by sticking to the brainy scientific forums (my favorite was called "the Nerd Shit Forum") and reading a few favorite training logs. In addition to the muscle building and nutritional knowledge I gleaned, I developed some real enduring friendships on that board.

So when I was diagnosed with cancer, I started a new training log over there as a way to keep track of changes in my body composition during treatment. I was especially concerned about monitoring muscle loss, but also wanted to keep track of any changes in weight, up or down. This log was also a place to hang out with my old weight lifting buddies, and some new friends jumped aboard, and all in all it was a great source of support for me in those horrible, lonely, frightening early days of my illness (as opposed to these horrible lonely frightening middle days of my illness).

One day my friend Kimberli posted a pointer to another board where a woman who had just finished treatment for lymphoma was keeping a log. This woman had gained 50 pounds, and was now documenting the months she spent dieting, exercising, and taking some dubious (imho) supplements in her successful effort to shed the unwanted chemo weight.

After reading about her travails, I commented on my own log:

I got the fear of the Bejeebuz reading that she gained 50 pounds. Gah. But from what I've read on the lymphoma boards, this is not at all unusual, mainly because of the Prednisone. Combined with inactivity, a deep need for any scrap of comfort, and ignorant doctors who say eat calorie dense foods to keep up your strength.

And before long the following comment appeared in my training log from the owner of the board. Now bear in mind, this is a very intelligent man, an accomplished middle-aged adult, a well-known expert in the field of fitness and nutrition, the author of at least five scientifically based books about crash dieting, rapid fat loss, and how to achieve "super leanness." He said to me:

Ok, since apparently everyone is too busy telling you how gret you're doing you need a serious fucking reality check.

Do you realize what the disease is that you have?
Cancer

It is a stone cold killer

and yo'ure worried about gaining weight?

are you fucking stupid?
no, we all know yo'ure not stupid.

your body is trying to fight against chemo and the disease and you're being a retard about not wanting to eat enough

don't worry, being dead will keep you skinny

Charming, no? I politely told him to back the fuck off, that I wasn't trying to starve myself or lose weight, that I didn't have an appetite problem because of the Prednisone, and that my doctors, who were NOT ignorant, had advised me to eat a balanced nutritious diet and to maintain my weight. There is scientific backing for this advice. Someone else said that perhaps he'd misunderstood my goals, and a few others chimed in, and blah blah blah. But something about cancer had triggered his ire, and the board owner was on a roll. He went on:

Who the fuck said anything about body recomp?

She's afraid of weight gain because thoes 'ignorant doctors' (you know, the ones trying to save her life) think she should be eating calorie dense foods. Dam straight given that appetite is a problem and cancer tends to cause tissue wasting (called cachexia). Lose too much LBM and you DIE. And what prevents that? Eating food. And when appetite is fucked, what do you do: you eat calorie dense foods. Which is what it sounds like the 'ignorant doctors' told her.

But hey, maybe she can stick with the CR regimen and truly starve herself to death

I mean, it worked to well for her to this point.

she's worried about weight gain and keeps trying to maintain her exercise routine in the face of cancer

she's in denial is what she is

but you guys feel free to keep encouraging this crap

A minor flamewar ensued, with some friends jumping on my bandwagon and some of his lackeys jumping on his. I finally ended up leaving the board altogether, because you know? Life is just way too damn short to waste precious energy hanging around such unbridled assholery.

But there's a tiny moral to the story, and it's this: having cancer is a lot like pregnancy in yet another way, besides the puffy ankles, nausea, and weird cravings. It seems to be an open invitation for intrusive strangers to shower you with uninvited amateur medical advice and regale you with horror stories. And no matter what decision you make about your treatment, some irrelevent asshole with pronounced boundary issues is going to vehemently disagree and loudly predict your imminent doom to whomever will listen.

But you have to stand your ground. It's your life, your cancer, your survival that's at stake. And this, my friends, is why the great benevolent Flying Spaghetti Monster gave us tall proud middle digits on both hands. If cancer doesn't teach you anything else, it will teach you to use them wisely and to use them well.


The author after enjoying yet another stack of delicious high protein 27-grain pancakes with organic raspberry preserves.

Don't Choke On The Damn Baby

I'm slowly and laboriously hoisting myself up from the bottomless depths of the Big Ick today. This morning my designated driver and I managed a leisurely stroll over to the neighborhood grocery store where I purchased a jar of glutamine powder to help combat the evil neuropathy.

And damned if they weren't playing Mardi Gras music! Mardi Gras season officially opened on January 6th here, and they already had a big table full of fresh baked king cakes at the entrance to the store. This cheered me immeasurably, as I love Mardi Gras with the unabated fervor of a convert (even though I always get the damn baby).

Mardi Gras: One more great reason to live. Onward!


Ah, the seldom sung pleasure of wind on the scalp

The Big Ick Returns

Hallo gang members! I'm just popping to let you know that in spite of their valiant efforts to poison me, I survived my fifth toxic infusion of chemotherapy yesterday. I threw up 9 times last night and am as weak and woozy as a drowned kitten today. The Prednisone has triggered a bad case of edema, and according to my brutally poetic designated driver, my face "looks like somebody inflated it with a bicycle pump until it's about to pop." I can barely see anything through the tiny slits in the puff that are my eyes.



The next few days are going to be hell on earth, the Big Ick, but they will pass and I'll be back kicking and screaming. Meanwhile, that's five down and either one or three to go; and the current score is five to nothing with me in the lead. Go team.

My Brilliant Idea

My chemo infusion usually takes around six hours, so I'll need to eat something while I'm there. The problem, of course, is that anything I eat during chemo is destined to be a repulsive food for me from that moment on. I now officially loathe cheese, bread, crackers, peanut butter, cranberry juice, and mint tea.

So here I am trying to pack a lunch, wondering what the hell I should eat tomorrow. What food do I not mind hating for the rest of my life?

Hmmmm, let's see. How about this:



I'll enjoy a slice tonight, and take another slice to the hospital tomorrow. And forever after, I will be that hideously annoying person at every dinner party who says, "No rich dessert for me thanks, I'll just have an organic carrot."

Please, don't hate me.

The Halls Of Injustice

Since I'm scheduled for chemo tomorrow (and I'm dreading it more than you can possibly imagine), I went down to the hospital this morning for my pretreatment blood work. The place was packed, even more than usual, backed way up from being closed over the holidays. I had to wait almost two hours for my turn with the phlebotomist.

I prefer to spend my waits on the fifth floor standing in the hall rather than sitting in the waiting room with all the infectious coughers, and usually a few other germ conscious cancerites will join me. Today I had the pleasure of hanging out in the hall with Scott and Jack, the lung cancer guys.

Frankly, Jack is not looking so good lately. They missed his tumor for over a year: some ignorant schmuck of an MD just stared right at the x-ray and never saw it. So now he's an advanced small-cell stage IV, undergoing palliative chemotherapy and radiation simultaneously. They keep trying to put him into a hospice but Jack is a kicker and he refuses to go. He's thin as a shoestring with dark raccoon rings around his eyes, and his waxy yellow skin, stretched tight over jutting bones, is covered with open sores. The non-cancer patients go all blank eyed and look away when he approaches, but Jack is one of us so we smile and look him right in the eye. I shake his hand and Scott hugs him.

Scott hugs everybody, to my squeamish dismay as I am in the throes of an intense phase of microbe- a-phobia. Plus he's an old hippie so he always smells like a far out mixture of patchouli, yiang yiang, and rosemary essential oil woo, an unfortunate aroma that immediately triggers my anticipatory nausea. We probably look to the other patients as if we're dancing some wack kind of tango down the hallway: both of us smiling gaily, he lurches toward me with open arms as I scuttle off sideways like a crab. Eventually my choreography flounders, and he wins.

But Scott's a good guy, as cheerful and generous and kind as anybody I've met, even though the Universe has repeatedly kicked him when he's down. First he was hit by a car, which threw him 20 feet into the air, shattering his clavicle into multiple pieces, breaking all his top teeth, and leaving him with a permanent limp. A week later he lost his home and everything he owned to Katrina. And then after all that the poor bastard caught lung cancer and they never got around to repairing his broken clavicle or making him the new shiny white movie star teeth he'd been promised.

The doctors only failed to see Scott's tumor on the x-ray for three months, during which time it jumped from an easy stage I to an inoperable stage III. But as he's quick to point out with a tear in his eye, at least it's non-small cell so he's in a hell of a lot better shape than poor Jack. Who, frankly, isn't looking good at all.

Cheeze looweeze, you know? I mean, hell. Compared to these guys I feel like the epitome of wellness and good fortune. I'm practically oozing health and wealth, I'm like the pampered love child of Jack Lalanne and Bill Gates. After standing in the hospital hallway all morning hearing Scott and Jack talk about what's left of their lives, I realize I have no fucking right to whine about my situation at all. None.

But that doesn't mean I'm going to stop telling you about it. Because it still sucks, and I'm still not a trouper, and I still want the world to know how fucked up things can suddenly become no matter how hard you try to live a good life. Shit, as they say, happens.

So please excuse me now while I go wash the yiang yiang off my clothes then spend the next three days vomiting around the clock. I'll be back when it's over with more of my story. Stay tuned.


On the eve of the Big Ick

A Day at the Clinic

Ok, here's a typical scenario from Our Lady of the Damned. This is an almost verbatim dialog from one of my first appointments at the oncology clinic last September. The appointment took place four weeks after I was diagnosed with an aggressive lymphoma (from a supraclavicular lymph node biopsy) and two weeks before I started chemotherapy (yes, there was a six week delay). This was the first time I had ever seen this resident, Dr. A., who had just recently rotated into oncology.

English is not Dr. A's first language but, in spite of occasionally accenting an unusual syllable, she is easy to understand. Her bedside manner, however, is extremely cold, brusque, and unfriendly, and it may be that there is a cultural barrier to our communication. Also I believe there is strong pressure on the residents to keep clinic appointments well under ten minutes.

* * * * *

Dr. A: [walks into the exam room brusquely, without greeting me or introducing herself] Where is your port?

Me: What? I don't have a port yet. The surgery to have it installed is scheduled in two weeks.

Dr. A: [studies my chart] This is wrong. You should have started treatment already. I'm going to make an appointment to have a port installed this afternoon.

Me: This afternoon??? Um, I thought that it had to be done by a surgeon? In the surgery department? Operating room? Anesthesia? Kind of a big deal?

Dr. A: [walks out of the exam room without replying; is gone two minutes, then walks back in] The port will be installed in two weeks.

Me: Right. Listen, I have a few questions...

Dr. A: Are you die-ABB-uh-tick?

Me: Die what? Oh, diabetic. No. No I'm not. But I ...

Dr. A: How long have you had that brown rash?

Me: [????] Oh! You mean my freckles? Since I was a small child. My ancestors came from Ireland. But I have a question about...

Dr. A: Open your mouth please.

Me: Nnngh aahhh... About staging. When are the tests going to be done to determine what stage...

Dr. A: You are stage four. Take a deep breath please.

Me: Four. Ah. But how do you KNOW I'm stage four without any tests? There's been no PET scan, no bone marrow biopsy, no...

Dr. A: The cancer has spread. Breathe normally please.

Me: Spread where? How do you KNOW?

Dr. A: Your you-TERR-us is enlarged on the CT scan. Breathe again please.

Me: My what? Oh, my uterus. Yes, it is enlarged but it's benign. I had it checked last week. Did you see the results from my Pap test?

Dr. A: We do not communicate with the gynecology department. [walks out of the exam room]

Dr. A: [walks back in two minutes later] The cancer has spread to your liver. Take this paper to conference room 2 and...

Me: Wait. I know the CT scan showed foci in my liver, but without a biopsy or at least a PET scan how can you be sure that...

Dr. A: It doesn't matter, the treatment is the same anyway. Take this to conference room 2 to schedule your first treatment. [turns to leave]

Me: Wait! Can I talk to you about the pain? I have pretty severe pain in my sternum sometimes, where the mediastinal tumor is pressing against the bone? See how it bulges out? And I...

Dr. A: Yes, that is normal. Please take this paper to conference room 2. [turns to leave]

Me: Wait, just one more question. Shouldn't I have a flu shot before I start treatment?

Dr. A: Why do you ask this? We have never said such a thing.

Me: Well won't my immune system be compromised once I start treatment, putting me at higher risk for flu?

Dr. A: Yes.

Me: So can I get a flu shot here? Do you offer them?

Dr. A: You are free to do as you please. Now go to conference room 2. [walks out closes the door]

* * * * *

Yes, yes I did: I went straight home and cried.

Stay tuned, more true tales of the damned to come.

Our Lady of the Damned

In a recent comment Jeanne wrote:

"I am really disturbed by the descriptions you give of your care at Our Lady of the Damned. One oncologist? He never sees patients? You see a different resident every time you go in? I would be insane.

I know that it's all about the money, but I'm really concerned for you. Have you considered moving? Is there anything I can do to help? I don't make that offer lightly, please let me know. You deserve the attention of the best doctors you can find, whether you can afford to pay them or not."

Jeanne, you're right: I do deserve the attention of the best doctors. I deserve much better medical care than what I'm receiving. But so do the 45,999,999 other uninsured Americans. And the underinsured, the medically indigent, the people whose insurance has maxed out, the people with no transportation or ability to get to a decent medical center or for that matter to any medical center. Not to mention people in other parts of the world where there is no medical care at all, much less optimal care. But in a profit driven market there's not enough of that attention to go around.

I'm just a minor bit player in a much larger tragedy, already guilty of using the educational, racial, social, and other privileges I have to be assertive and maybe give myself a slight edge. I don't have the resources or energy to move now, and besides I doubt I'd be getting much better care at any other public teaching hospital.

I really appreciate your concern though, and you're right: it makes me totally insane. I'll try to write more about the situation at Damned General over the next few weeks. My next chemo is Thursday the 4th, so I'll be knocked out of the ballpark for a few days. But there is a lot to say, and sooner or later I promise I will. Stay tuned.

To Sleep Perchance To Dream

I started the new year with a wonderful, weird, technicolor dream, perhaps the most vivid sleeping dream I've ever had. I woke up at 6:00 this morning as usual, fed the dogs and let them out. Then I made myself a cup of chai tea and for some reason I crawled back into bed. I didn't mean to, but I fell asleep. And it was during this stolen hour of second sleep that the amazing dream arrived.

In the dream, I had just moved into a very small apartment in a seedy old building in a faraway town. It was only a single room with an ancient Murphy bed and a funky little kitchenette in one corner. But somehow there were dozens of closets and cupboards, oddly sized and shaped, many hidden behind cleverly disguised trap doors.

As I wandered around the small room I kept discovering new nooks and crannies and holes in the walls. And when I opened the strange little doors, I saw that the spaces inside were all packed full of brightly colored circus costumes.



The former tenants of the apartment had been a couple who were circus performers, and they'd left in a hurry, leaving all their colorful outfits and props behind. The other thing they'd left behind was their small daughter, who was dressed in a pink tutu and sobbing.



The landlord told me the couple had fled the country and were never coming back, so I could keep their stuff, or I could toss it. He told me they had taken their son with them but they didn't want the little girl any more. I asked him what was to become of her. He shrugged and said I could either keep her or turn her over to the authorities. Several of the closets were filled with tiny tutus: the little girl had been trained as a circus acrobat, even though she was only two and still in diapers. I decided to keep her and spent most of the dream carrying her around on my hip, stroking her hair so she wouldn't cry.

There wasn't much of a coherent plot, at least not that I can recall. Mostly just a lot of aimless milling around. The apartment was built around a courtyard, and the other tenants, who all seemed very exotic and creative, wandered in and out of my room, their long brilliantly colored scarves flapping in the wind. Some of them gave me advice about caring for the child since they had known her parents. But they were mostly vague, ephemeral and mysterious, in the way of dreams.



I do remember that I befriended a woman who was a Shakespearean actor who had recently been cast as Hamlet in some big famous production. My dogs were in the dream too, and they followed us around without leashes as we visited the neighborhood shops and cafes. Everyone in town was dressed in circus costumes, like the escaped lunatics in The King of Hearts, but it didn't seem strange at all. I walked down the street wearing a juggler's outfit, with the little acrobat perched on my hip, and I was happy.



I think I can say, unequivocally, that the saddest thing that has happened to me so far in 2007 is that I woke up from this magnificent dream.

I've read that the ancient Greeks built special dream temples which were considered hospitals of sorts, called asclepieions after the Greek god of medicine. Sick and injured pilgrims flocked to these dream temples where it was believed they would be cured by dreams sent to them by Asclepios. They would sleep in the temple overnight and the next morning report their dreams to a priest or oracle who would interpret the dream and prescribe a cure, often some kind of creepy healing ritual involving snakes. (Snakes! With any luck, I wouldn't have had health insurance back then either and would have been spared.)

I've never been a big fan of dream analysis myself, perhaps because my own dreams are usually so entirely forgettable. But this was one of those dreams that has followed me around all day, lingering in my peripheral memory, haunting my waking thoughts, demanding to be addressed.

I suppose if I had to go with any one school of dream analysis, I would lean towards the one that says everything in the dream is really my self. The dreamer is me, but so is the sobbing child who I am not turning over to the authorities. I am also the fugitive circus performers who abandoned their own daughter. I'm the woman cast as Hamlet, always debating whether to live or die. The seedy old apartment full of secret compartments storing abandoned costumes is me. I'm one of the escaped lunatics, oblivious to the Great War waging outside the walls. I might even be the dogs who no longer need leashes. Me, me, it's all about meeee!!

And yet I still have no idea what the hell it all means. Maybe it was just the Ambien, or the Phenergan, or the Lortab. Or all three. Lord knows I'm taking enough drugs that mess with my brain. But whatever it meant it was a lovely dream, and I didn't want it to ever end. I hope it's a good omen, perhaps a pre-Freudian gift from Asclepios, a message that the year ahead will be filled with wonder. May 2007 be a dreamy and colorful year for us all.