Can You Really Be Friends With Your Neuro-Oncologist?

I don't think I can be friends with my neuro-oncologist. You think I'm being silly?

She's saved your life, you say? She's intelligent; she's pretty. Why can't she be your friend?

Because I don't think we could really be friends.

When we're together, in the same room, like we were today, just hours ago, I'm so focused on the images of my brain that shine behind her that I can't pay attention to the words she says.

I mean, I can only pay attention to my brain. All 16 images of them. This hole here, that hole there, the white, the black, the white, and so on.

If we ever bumped into each other at a Cubs game or a play, my words would stumble. And she'd think it was a seizure.

But it wouldn't be the kind she was used to reading about, no, it would be an outrotextbook kind but she wouldn't accept that as an excuse.

She called me a boring patient today, I think. Because I had a stable MRI. And that was the sweetest thing she ever said.

Yom Kippur, and Papa Smiled

For years this Jew worked on the Jewish holidays because he never even thought about belief.

And then came cancer. Again. And then he met the rabbi.

For the last two years, I think, I've done the go to the night time service then go to work the next day strategy. Uno steppo at el timo, I call it.

Then I got the call. The rabbi would like to honor you by having you carry the Torah around in the procession Monday morning, said the old woman's voice.

And I had to think about it. And now that I think about it, I wonder if it was a test. Was it by the rabbi? By Papa? By god?

And as I walked around, carrying the heavy, holy scrolls, I felt like I was the rock star I had never become. Everyone reached out to touch and kiss what I had in my arms on this most important day.

The temperature plummeted last night. The wind blew trashcan lids in the alleys. Our seven foot tall sunflowers were bent over and bouncing and no longer yellow and standing tall.

And all of us in the temple were begging for forgiveness and asking to get written in the book of life. For one more year at least. One more year of life and love.

When I listened to Rabbi Doug chant from that Torah that I had just carried around the temple for everyone to kiss, I saw my grandfather and grandmother, and my Uncle Mitch in the room as angels, and they danced next to the rabbi with 11,000 more.

When Karla and I made it home after a near-four hour service, we stopped at Whole Foods, and picked up gluten free cupcakes with thick white frosting. Once home, we gave each other toasts as if we were drinking martinis, and broke our fasts with sweet cupcakes and a kiss.

Labor Day Poem for Cancer Patients

laborious |ləˈbôrēəs|
adjective
(esp. of a task, process, or journey) requiring considerable effort and time : years of laborious training | the work is very slow and laborious. See note at hard


So is learning to play a musical instrument,
to create art, to write. Does that make cancer art?
No, you idiot. Cancer is hell.
What about the pharmaceutical industry?
You've been watching too much TV. Or been online.
(You haven't been reading the newspaper, have you?)

Cancer is laborious. So is baking bread.
So is fixing cars. Paying the mechanic.
Taking a shit while constipated is laborious.

Jerry Lewis is still on TV raising money for MD.
And Ed McMahon is dead. With Johnny.

Some say love is labor. I say it is easi-
er than a 4-day workweek on a salary,
more difficult than chemo for love gets you through it.


Thesaurus
laborious
adjective
1 a laborious job arduous, hard, heavy, difficult, strenuous, grueling, punishing, exacting, tough, onerous, burdensome, back-breaking, labor-intensive, trying, challenging; tiring, fatiguing, exhausting, wearying, wearing, taxing, demanding, wearisome, tedious, boring, time-consuming; archaic toilsome

For Ted Kennedy and My Fellow BTB Friend

In first grade, my favorite book was Four Days. Lots of pictures of President Kennedy's assassination. Oswald's murder, too. And other stuff. I must've taken it out of the library 40 or 55 times.

Well we woke up to the radio news today that his youngest brother died. Youngest at 77. And you know why. BT. Or BC. Whatever you want to call it. I almost laughed when I read AP's paragraph that Kennedy was diagnosed with a cancerous brain tumor in May 2008 and underwent surgery and a grueling regimen of radiation and chemotherapy. But that's because I almost cried this morning.

***

Two days ago Karla and I met a fellow BTB--brain tumor blogger--on a warm night downtown at Pritzker Pavilion. We had never seen each other before in person but we somehow figured things out. I pulled back my hair to show her my scar; she pulled back her scarf. We compared issues, problems, told each other she/he looked great, and laughed about things only cancer survivors and partners can understand.

Then she left, and Karla and I walked around an acoustic and geometric joy on what may have been the last warm Monday night before school begins again. Maybe that's the good news I should have typed first.

Take that back. Always end on a happy note.

Like Ted, we'll take care of these health care bullshit issues, one of which, I might add, is a cure for brain cancer.

Amen.

7 Step Recipe for Brain Tumor (& other cancer?) Patients

*Not sure of the proper order.
**I ain't a doc but a long-term patient. Who better to trust?
***I'll do my best to provide links to everything instead of spending forever describing details.

1. Eat a gluten free, healthy, vegie diet. Add kefir and turmeric. The first two help digestion and the last one is supposed to kill that cancer. You can shake it on tons of things and it's cheap as heck. It's also a great excuse to eat vegetarian southern Indian food (although not all food is gluten free, so be aware).

2. Get enough sleep. Especially if you work. Especially if you work full-time.

2a. Melatonin at bedtime. I take a lot and have for a while, but that's because of something Karla read many years ago. I suggest reading this link at emedtv.com that tells you a whole lot about the pros and cons.

3. Tongue sores or mouth sores? Ask your dentist for Chlorhexidine Gluconate Oral Rinse USP, o.12%. It's a mouthwash by prescription that may burn while swishing, but my dentist gave me some and it helped a lot. (And I still use it sometimes.)

3a. They're probably officially called canker sores. You can also just go crazy with baking soda and water. At the same time, make sure you're taking zinc as well as folic acid. Lots of the latter. This, I think, is the best way to deal with it.

4. Don't let #1 stop you from a whiskey or a gin martini or a glass or two of wine or a gluten free beer when you feel like having one. Life is too short. For some of us.

5. Say El Na Rifa Na La a lot. It's a Kabbalah phrase that means Thank you, Lord, for healing, and continuing to heal me always. If you don't want to say the word Lord, just thank something or someone for healing you. Believe you are being healed. For that's the only way you can be healed.

6. Enjoy your life as much as you can. Remember your five senses.

7. Love.

BT, Kidney, Otitis Externa

Brain tumors, kidney stones, and otitis externa. What have they in common, you say? You return to them.

Or they return to you.

I explain. Many cancers make this offer: go without me for seven years or so, and I ain't never comin' back. Or so I heard, anyway. Or so we're told.

Well, mine came back after a decade of rest. Of vacation. Or rock and roll; of learning love.


And I had a kidney stone or two a year after radiation. All those brochures repeat: once you've had one, you're more than likely to have one again. (So drink water; drink water; drink water. They don't say: you'll piss all night; piss all night; piss all night.)


And now, swimmer's ear seems to be returning. I feel as if my left ear is stuffed with gum. Otitis externa they call it in the Doc Coffee Shop.

I didn't even remember having this, but K reminded me I had it near the end of radiation. They said it might happen. Lose your hair. Stuff your ear with wax. Forget stuff. Whatever; just get rid of the damn thing, OK?


But let me end this on a happy note. Other things we return to and we smile: restaurants, candy bars, flowers, songs. People. Happy songs, happy songs. Even the sad songs will sound happy now. As long as I hear them. As long as I get rid of that otitis externa.

An Excerpt from the Journal of the Global Love Association

I just returned from five days in Portland. My uncle Al brought me out there where he just moved for a new gig. He's an oncologist. He's my uncologist.

One morning, I sat on his huge back porch and drank coffee and breathed the freshest air I've inhaled for years. Trees surrounded me. It was my last morning and I'd already read the four day old Sunday New York Times. So I found a magazine called JAMA in their kitchen. And what other title but this could grab my peaceful attention?

A Network Model of a Cooperative Genetic Landscape in Brain Tumors

I sipped the hot black caffeine and read the abstract, the results, the conclusions; so many big words. What did it mean? Are doctors good at Scrabble? Crossword puzzles?

Then I read this happy introduction: Malignant gliomas, with disproportionately high morbidity and mortality,¹ are among the most devastating of human tumors. Ah yes, good morning indeed, I remembered.

And I remembered a rule: if Karla were here, she wouldn't have let me pick up that journal in the first place.

Why? Cuz here's her formula:



and it's simple, really, once you add l+o+v+e.

Read Today's Trib Article about PJ

I walked to the library today and saw this front page article grabbing my attention from the Chicago Tribune metal box on the corner. If you're here, you should read it, too. And hope that PJ helps find a cure for all of us.

Here's to you, PJ.

A Roof is Like a Brain

We just had our roof done last week. Four layers ripped off and a new one placed. We had to. The inspector told us when we moved in: "you'll need to in a few years," and now seven years have passed. Last year we got some drips in the ceiling after rainstorms.

We got different prices, looked at different catalogs, talked to different salespeople. Similar, but not the same. And not cheap. But in the end, we knew we'd never know the final price until it was over. And we'll also never know how things will be after the next big storm until it hits; how the roof will be in three years, in five years, in ten. And would our house be different if we would have used another roofer?

A roof does not think, but it's on the top of the house. And though a brain does all that thinking, let's not forget it's an organ; it's tissue. On the top of the head. On the top of the body.

When this tumor returned some five years ago, I asked five doctors what I should do. I got six different opinions: chemo; radiation alone; radiation and chemo together; no, biopsy first; surgery; no, just wait another six months and let's see what happens.

While I wasn't happy having to make such a decision, I'm happy with the decisions we made.

So when I heard neighbors talking with each other out the window this morning about how they would have done our roof differently, how they didn't like the color, how they disagreed with the roofers' technique, and so on, I was confused. I waited and sipped my coffee. I went for a walk. Three miles. I stared at roof after roof after roof. And when I got to ours from across the street, I

thought ours was the most beautiful roof in the neighborhood. I was pleased with our decision.

Garage Diem

After something like a bt hits you, you're supposed to appreciate every moment. Seize the day! Don't waste time and stuff.

So after I ate a mushroom and cheese and garlic omelet this afternoon while watching the Cubs vs. the Cards, I hit our garage. And for the first time ever since moving in over seven years ago, I cleaned it.

I carried heavy stuff into the enormous dumpster in front. I threw little stuff into the garbage cans in back. I put whatever people might want into the alley.

And I rearranged things--little garden items here, bigger tools against the walls, car stuff on the other side. And I swept swept swept ancient poison and dirt that inhaling must have been like smoking half a bag of Drums.

and when i was done
all i wanted
was a shower and a beer
and if Karla were here
she would kill me
and I'd say
all I was missing was a boombox
playing the smiths or something
stop me if you think you've heard this one before

maybe tomorrow i'll take care of the attic
if I'm not too sore

Boy's Funeral Saturday; Sunday, Old Man's Death

birds they be feastin after 2 days of showers
and death there be 2 now in 24 hours:
yesterday's funeral, myles was just four
near the next state, on the south side so far
and in that state, the next day, a man near a century
lived in a town of three hundred fifty
breathed his last laughing breath when they pulled the plastic plugs
and the grave plot he's saved, they'll soon begin to dig
so in between there's some jewboy who wants to live live live live
cuz he recognizes life and he's in love love love love
and at the same time this death stuff make him why? what? huh? why?
cuz the 4 year old had a brain tumor especially
but i will live & love cuz i ain't forgettin
the songs they sang with myles' coffin open
and the travelin that ol' grandpa ron did when
there was no bullshit worldwide web to check in
(nonetheless i'll take my travel writer
and do my damned best to excite her
and introduce her to a rabbi & love
while she kisses my flowers with life)

written 4.26.09

Myles

His name was Myles, not was, but is, and he wasn't even five years old but he died yesterday morning after spending the last nine months or so in the hospital. Yes, it was a brain tumor.

I saw him in rehab when this whole thing had started, it was last summer and we could all see Lake Michigan from his ninth floor window downtown. It was a sunny day, we were all smiling, Myles, too, even his also young roommate who I can still see today.

Why can I still see him, with my terrible memory? Even with that hole in my head from that surgery from the last century?

Myles, I see your face, too. I see your smile. If I were angry, I'd wonder why. But I work with your grandmother, Myles. And she came to work today. She was dressed in black over her sweet Jesus-loving black skin, and when I hugged her tight for ten seconds that seemed like a minute, I couldn't be angry at anyone about anything.

But I am sorry, so, so sorry that this kind of peace came so, so early.

it's done. the first draft anyway.

i've been working on this thing since january. 8 months. and it's about the 12 months before it. that's 20 months. 20 months for 100 pages. simple story problem i guess.

the thank you list is long and many names are mentioned throughout the story. i've tried to list them again here but i know who they are and they know who they are, the dead ones, the ones still alive, and the ones who have saved me in so many ways.

i mention karla though, cuz i have to. cuz even though there's so many love songs now they're generic, i can't help adding to the pile and the same goes with words and dedications. the year of death would have ended a different way without her. cuz why the hell bother without love?

now read it if you want to.