We're All Buddies On This Bus

A few weeks ago I was down at the hospital having blood drawn, and the phlebotomist and I were engaged in an in-depth analysis of the pros and cons of giving my own wig a home haircut. The cons were leading: it would never grow out if I fucked up, and besides, it might trigger my old compulsive haircutting disorder and how weirdly sick would that be, considering that I'm completely stark raving bald?


Bald as a baby

Suddenly, the PA system began to blare a tinkly music-box rendition of the Brahms Lullaby.

The phlebotomist lit up like a cigar. The tinkly music meant that an actual baby was being born, she told me. Right then, that very moment, in this very hospital! Mindless of the huge hideous needle protruding from yet another collapsing vein in my elbow, we paused our wig discussion for a moment to contemplate the special pink or blue miracle du jour: another tiny, helpless (and possibly baldheaded!) babe had just been born into poverty at Our Lady of the Damned.

"So," I said once she resumed fiddling with the plunger, struggling to extract one last drop of blood from the pathetically desiccated turnip that is my right arm. "What do they play when somebody dies around here? Wagner? Mahler? Taps?"

The phlebotomist looked up at me, shocked, her expression as horrified as if I'd just wandered downstairs to the nursery and set that poor newborn infant on fire. She was so disconcerted, she yanked the needle out of my arm before undoing the tourniquet and blood spurted everywhere.

I mean, yeah, sure, I get it. We live in a culture where birth is the happiest most amazing miracle imaginable, but mentioning death in anything other than hushed reverent euphemisms at a funeral parlor is a tasteless and rude social offense. Nobody wants to be reminded of mortality: maybe if we pretend to ignore it, it will cease to exist. Viva la denial!

But you know, this squeamish pretense of cheery deathlessness often leaves those of us who've been arbitrarily assigned to pair up with the Noble Truth of Impermanence as our buddy-system hand-holding partner on the great field trip through life feeling just a little bit crazy, and very very lonely.

So, Death. Capital D. Mine, yours, everybody's. May I talk about it frankly here, without being scolded?

Last night I learned that a woman I used to know back in California died of lymphoma, a little over a year ago. She was almost exactly my age. I was talking to my son, and he had asked me if there was anyone I would like him to invite to his wedding. I thought for a moment, and named this woman and her husband, who had been my son's music teacher over 15 years ago. He hesitated a beat, then blurted out, "Uh, actually Allison is dead." I imagine that delivering this news was somewhat awkward and uncomfortable for him, considering. But I appreciated that he plunged ahead and talked about it openly, even though I was obviously rattled, and told me what little he knew about the details. It had been a long time since we'd been in touch with these friends, so he didn't know much.

After we hung up, I went online and found an obituary. It said that she "died gracefully and in peace at home with her loving husband at her side, following a long and valiant battle with lymphoma." Naturally, my first self-absorbed and embarrassing thought was: Hooboy, nobody in their right mind is ever going to say that about me, unless maybe there's a very large tank car of morphine involved. I'm sure as hell not being graceful or valiant while I'm sick, and I doubt anything short of some really badass drugs is going to change that if my condition worsens.

I was relieved to read on, though, that "Allison was absolutely her own person and never strode blindly down life's path but always found and followed the right and compassionate way." Yes, I believe she did, although as I recall there was never anything sticky-sweet or nicey-nice about her. I admired that, and I would be honored if those same words were carved on my headstone. Or scotch-taped to my mayonnaise jar, or whatever.

And finally I was really touched by this: "Allison's latest attachments were to the city of Paris and to her Border collie, Jack, but her greatest love, her husband, survives her and he mourns her passing."

I wonder who wrote this? Obviously someone who knew her well. How often do you read an obit that mentions a surviving canine by breed and by name, even when the dog was the dead person's truest friend? She was always a dog person: back when I knew her, their dogs were Tucker and Ajax. But Paris, I think, might have been something new.

I believe she was lucky to have died at home. I would certainly prefer that to dying in a hospital. But if I do have to die in a hospital, I want my devoted survivors to promise me this: that somebody (Dixie Rae? Are you listening?) will break into the control room at Our Lady of the Damned, lock the door, and blare a recording New Second Line by the Olympia Brass Band over the PA.

And if anybody asks, tell them I was never graceful or valiant, but I was always my own person, a real pain in the ass who made the whole damn bus stop every ten minutes for juice and cookies and bathroom breaks on the great field trip through life. And that the whole time, I was never ever afraid to hold my assigned buddy's hand.


Allison, 1954-2005

Simplification

So the house cleaning begins. Every day I drag more of these big black garbage bags, bulging with discarded memories and broken dreams, out to the curb. I won't need much wherever I'm going: a table, a chair, a bed, a dresser. Maybe some books. All the rampantly reproducing stuff and clutter and possessions and things need to be excised from my life like a cancer. The process is brutal, but what a relief when it's done.

Rocky Road

After this last cycle of chemo, I didn't bounce back as well as I usually do. I never got my strength back. I don't go for walks, I can barely drag myself up the stairs. I'm depressed, I can't concentrate. My hands and feet are numb with neuropathy. I don't have the energy to socialize, to make small talk and play the social game so I'm alienating people right and left. I haven't felt well for over two weeks.

I've been taking Lortab almost every day for pain: mouth sores, heartburn, gastric cramps, aching joints, a back that's giving out. Last night I had such severe stomach cramps I couldn't stand up. I was bolting to the bathroom every five minutes. Finally I vomited twice and felt a bit better. I had to take two Phenergans to fall asleep. It's been rough.

And at the same time, the vultures are starting to circle around my house. Naturally people are eager to profit from my misfortune. I'm being pressured to "show" the house for realtors. But I don't have the energy to clean up, and I can't stand the thought of my privacy being invaded when I'm sick like this. I need my house to be my refuge right now.

I dread the looming inevitability of strangers trooping through my rooms with little warning, peering into my closets and at my belongings. My dogs and I will be forced to vacate the premises. Where will we go? I don't know, I guess we'll huddle in the car at the Wal-Mart parking lot, praying to the fickle Universe that neither they nor I have any urgent intestinal distress during our exile.

I'm probably going to cut my chemo short, from the recommended eight sessions down to six. I can't find any evidence that the benefits of eight outweigh the risks, or even that there are any benefits. There is some evidence that whatever cancer cells remain after six treatments are probably recalcitrant anyway. And if the vultures hone in any faster, I may be forced to cut back to five. Or even four.

You know, this isn't the direction I had hoped my life would take.

The Kids Grew Up?!?

How the hell did that happen? I haven't changed a bit.


Christmas 1986


Last year


Christmas 2006



Firstborn with true love


Musical prodigy


Youngest with true love


Sound on dogs


My beautiful grandchild

Trespassing In Eden

Eating is no longer the simple pleasure it once was. Trying to keep myself well nourished has become a major ordeal.

Since I started chemotherapy, I'm repulsed by most of the foods I used to enjoy. Don't even say the word omelet to me or I'll barf all over your shoes. Also, I'm staying away from restaurant food now on account of the germ factor. (If you've ever worked in a restaurant you'll understand why.) But worst of all, I'm forbidden to eat fresh fruit. In fact, I'm not supposed to eat any fresh uncooked fruits or vegetables at all. Those bacterial outbreaks on lettuce or spinach or whatever that have made headlines recently would stand a pretty good chance of killing me in my raw-gutted, immunocompromised state.

And yet Sweet Baby Jesus, I would happily kill for a fresh, crisp salad right about now.



So anyway, I have confession. Today I am going to treat myself to a beautiful piece of forbidden fruit. I've bought myself one delicious sweet fresh ripe juicy locally grown seedless satsuma. The peel will come off easily, without contaminating the edible bits inside. It's been ten days since my Neulasta shot, so my neutrophil count should be fairly respectable. My gut ulcers are as healed as they're going to get during chemo. And man would it ever suck to come this far and drop dead from scurvy. So: I'm going to eat it.

You know, when I was small my mother used to tell me stories about how as a child she was always delighted to find apples and oranges in her Christmas stocking. I remember thinking that fruit was just about the lamest gift ever, and how pissed I would be if Santa ever left me produce instead of F.A.O. Schwartz.

So what can I say. I was a stupid jaded kid. Thank Dog, cancer has made me a fruitier person. Today, I gratefully risk my life for one single piece. L'chaim!


All I want for Christmas

The Hand We're Dealt

There's a paper in the December 21 issue of Blood: Journal of the American Society of Hematology titled Family history of hematopoietic malignancies and risk of non-Hodgkin lymphoma. They're looking at the role for genetic susceptibility in non-Hodgkin lymphomas, which is what I have.

One finding reported in that article really flew out and slugged me in the gut: "If a first-degree relative had leukemia, NHL risk was highest among women who reported a sister with leukemia."

I had a sister who died of leukemia. Her name was Martha.



This was back in the days when childhood leukemia was a 100% certain death sentence. Martha died on February 12th, 1954, a few weeks after her seventh birthday. I was not quite three months old.



So. Genetics. I never smoked. I always exercised. I ate organic broccoli sprouts and drank gallons of green tea. Cancer got me anyway. I know that some people look at cases like mine as an excuse to justify their own unhealthy lifestyle choices. Why bother? If cancer is already in the cards you're pretty much doomed anyway.

But I am sure of two things. One, my high level of health and fitness has helped me withstand the rigors of fighting this aggressive disease. For instance, without my good MUGA score, I wouldn't have been a candidate for the most effective treatment regimen.

And two, the odds of surviving my type of lymphoma have increased dramatically in the last five years due to the recent introduction of monoclonal antibody wonder drugs such as Rituxan. Every year my healthy lifestyle may have held the cancer at bay has significantly increased my chance of being cured. If lymphoma had caught up with me ten years ago, I would have faced a much bleaker itinerary.

Poor Martha. If leukemia had caught up with her fifty years later, she might still be alive. I was too young to know her, and every year that passes there are fewer people left who remember her. I've often wondered who she would have been, what it would have been like to be sisters with her. When my parents died, I salvaged a box of her pictures and papers, the things they'd saved to keep her memory alive. At some point there won't be anybody left who cares enough to keep these things. But for now, they're safe with me.

I'm Spirited! I'm Strong! I Have A Chainsaw!

Woo hoo! I got seventeen cards in the mail today! A colorful assortment of cheery holiday cards, get well cards, why the hell don't you ever answer your damn phone cards, all kinds of good stuff. I was tickled half to death.

So one of these cards has a chip inside, you know the kind that plays a tune when you open it. This one says "You're Spirited... You're Strong..." on the front, and when you open it, it says "You're A Survivor!" and plays the first three lines of Gloria Gaynor singing "I Will Survive" over and over again. I had fun opening it and closing it, making her sing, making her shut up. This was almost a little more excitement that I can stand these days though and after two or three rounds I was absolutely exhausted. Great card.



But I'm afraid I may have done something to sort of break the damn thing, because the last time I closed it, it wouldn't stop singing. I shook it, I banged it a few times, I even stepped on it. It kept on warbling. Finally I just tossed it on the kitchen table and left it lying there belting its giddy, vengeful, repetitive little heart out. I fixed myself some cheese and crackers and cranberry juice, and took them in another room on the far side of the house to watch an episode from my new box set of of Grey's Anatomy DVDs and forget about it.

By the way, this Grey's Anatomy stuff is pure 100% uncut heroin. I suspect my own children may be trying to destroy my brain, sending me these acutely addictive medical soap operas. It was that really hair-raising episode where the entire hospital goes on a Code Black alert because some guy has an unexploded explosive device wedged in his bowel. Speaking of which, I kind of feel like I might have one in mine too, but do you ever see my doctor heroically calling in the bomb squad? Anyway I actually had to watch three episodes to see how the situation turned out.

And when I came back? Yes. The damn card was still singing.

I mean, what's the deal? Is there a battery? Is there a shelf life, a statute of limitations? Will it ever stop? How many times would I have to run over it with my car to make it stop?

And if it does stop, what does that mean? That I will not survive? Will I die the minute it stops, is it like some foreboding omen out of the Twilight Zone? But which is worse, not surviving or having to listen to Gloria Gaynor chirp on and on about how I WILL survive for all eternity? Hmmm, tough call.

Excuse me now, I'm going to go try to drown it in the kitchen sink.


The Absolute Best Christmas Card of the Day Award goes to Kitty for this one.

A Pretty Good Year

2006 has been a pretty shitty year, if all you think about is cancer and money and grim stuff like that. But it was also a pretty wonderful year, in many many ways. This afternoon I was looking through a bunch of photos, and I decided to make a list of some of the really good, happy things that happened this year.

1. I lifted weights:
   
   
   
2. I learned how to fight:
   
   
   
3. I took a figure drawing class:
   
   
   
4. I learned how to wear a beret:
   
   
   
5. I went to the Mardi Gras:
   
   
   
6. I rode in a chicken run:
   
   
   
7. I danced:
   
   
   
8. And I danced:
   
   
   
9. And I danced:
   
   
   
10. I went for walks in the woods:
    
    
    
11. I made a beautiful garden:
    
    
    
12. I went swimming with friends:
    
    
    
13. I visited the Portland Rose Garden:
    
    
    
14. I attended a wedding in a donut shop:
    
    
    
15. I climbed the highest mountain peak in my state:
    
    
    
16. I hung out with talented people:
    
    
    
17. I hung out with strong people:
    
    
    
18. I picked figs in my back yard:
    
    
    
19. I rode around with the top down:
    
    
    
20. I watched a Night-Blooming Cirrus open:
    
    
    
21. I bought myself wicked red shoes:
    
    
    
22. I was given a magnificent painting:
    
    
    
23. I enjoyed lots of good food:
    
    
    
24. I rode a champion Peruvian Paso horse:
    
    
    
25. I drew self portraits with crayons:
    
    
    
26. I taught myself how to knit:
    
    
    
27. I started making plans to build my ultimate dream cottage:
    

I tell you what: I've had hell of a lot worse years than that.

A Morality Tale

This is me:



This is me with my good friend kd:



Kd lives with my designated driver, but she likes to come over to my house to keep me company sometimes.

I'm mostly a pretty decent person. I floss, I vote, I'm sound on dogs. And I never ever forget to blame the patriarchy.

But I'm also stubborn. I'm grimly determined, excessively autonomous, rabidly independent. Sometimes when people try to help me I bare my teeth and hiss. I'm not very good at letting people help. But cancer is doing its damnedest to try to change that.

This is my home office:



My friend Lisa who's into feng shui says my office is in the "helpful people" area of my house. She says the fact that I have a dead woman falling off of an exercycle in the midst of festively deranged chaos just might indicate that maybe I'm not doing my very best to attract helpful people into my life. Snnrrt.

Nevertheless, this is a package that appeared on my front porch:



It's from my very helpful friend Julie who lives in Brooklyn. But only because she has a hotshot job in Manhattan; if it weren't such an inconvenient commute, she would live here, in my upstairs rooms. I'm afraid Julie has sent me a rather large gift.

This is my extremely helpful designated driver:



He drives me to chemo, he drives me home, he drives me mad with desire. He's opening this package for me because he believes I'm weak and anemic and severely neutropenic and could die from a paper cut any minute now. He's pretending that he's not intimidated by my bared fangs.

What could be in the box? Kd watches but doesn't try to help. Good dog. She respects my fangs.



Oh my stars, it's....it's a super efficient electric HEATER!



It looks like something the Jetsons would own. For the first time this winter, my helpful people area will be warm! Yay Julie!



Moral of the story: It's good to have helpful friends you can lean on when the going gets rough. Thank you.