The Night Before...

It's the night before tomorrow. Wow, that sounds so zen, doesn't it? Seriously though, tomorrow is my second appointment with the oncologist. Henry and I will meet with Dr. B to go over all the test results from the past week and a bit. Yesterday and today, I had scans and xrays, blood tests and agony and questions and long, hot baths and sleepless nights. Tomorrow, a bunch of questions will be answered and a bunch more will pop up, but hopefully in the next couple of days, my chemo treatment will start and all the alien nastiness invading Planet Brandy will begin to be wiped out. Vive la revolution!


{the view from our hotel room in waikiki}

My time with the zen master dude was interesting. After four hours of zenness, my head hurt. The first hour, Henry demonstrated his zen knowledge with zen master dude. The next two hours, zen master dude grilled me on my existence. Picture a circle. Now picture a squiggly circle around the other circle. The inner circle is me. The squiggly circle is the stuff around me, the stuff I'm attached to. Do I want to find out what's in the inner circle? . . . Now think of this: 0=∞. . . . Then zen master dude asked me "Why purple hair?" My thought bubble, "Because I like purple, Roshi." But I think I gave some fumbling lame reason which made Roshi just stare at me.

So then zen master dude wanted me to play a shakuhachi, which he told me is a flute. People from my Mifflintown years will bust a gut because they know how much I sucked at playing the flute. BUT despite my suckiness at being a flautist, I did it for, let me see, oh, five years. Anyway, the shakuhachi isn't the kind of flute you're thinking of. It looks more like a recorder, and it's used for meditation. It's fucking hard as fuck to play. I tried for an hour. My cheeks hurt. But another zen master dude said that I had a rare quality for a beginner to play such clear, strong notes with such purpose. Rock on! So there I was, in the training room, with zen master flute player, and this other dude who was practicing martial arts and was chanting sutras which sounded like a bullfrog and me blowing away, and Henry just sitting there. I totally felt like I was in an anime movie, and that we were all going to transform into forest creatures or earthly structures.


{me and H in leis made by our friends Hoku and Kaipo}

As funny as that all sounds, the zen master meeting has stuck with me. Of course, I think it's probably pretty common to think of existence questions when faced with life / death situations, but zen master dude number one kept asking me, what's stopping me from finding out about the now? Am I really that attached to my suffering and my past? These are questions as unanswerable as others right now.

Honestly though, today sucked ass. I feel so freakin' lame. For an hour, I shopped online for cool fabric so I could sew myself some head coverings. Then I decided that I didn't want to buy any fabric and sew head coverings, so then I was down on myself for wasting all this time.

But I can't help but notice the things that people have done. It makes me want to get out of my rut that I've dug myself in. For instance, Russell writing a poem for me today; Vicki sending me a bear and a bag from PA Dutch country (and frisbees for Chloe and Mylo); Hilary callling to ask when she could bring over frozen turkey soup she made; Betty bringing me head coverings from the cancer centre, and a lavendar eye pillow she made for me; Candace bringing over costumes for the kids and smoked salmon her husband caught and Chinese bbq pork; friends of friends who have offered their advice, help, and resources; my in-laws for helping with the kids; my parents for making plans to come out here to help; the lady from the Canadian Cancer Society who called today to help set me up with someone who's gone through a similar experience; CCHS for bringing me flowers; people who've emailed me on Myspace, 43things, Facebook, and here; Chris for watching the kids yesterday morning; Heidy and Greg for watching the kids last night; other people who have emailed to offer their help and company; my green towel for keeping purple dye off my pillow and for catching those random tears; Henry and the kids for bearing with me; and Victoria for organizing a team, "Brandy's Babes," for the Race for the Cure (http://ocraceforthecure.kintera.org/brandysbabes).

Yesterday, Henry and I celebrated our third wedding anniversary at Le Crocodile. We had a South African wine called Graceland (2004). The only reason I'm writing that here is so I'll remember what that wine was, cuz it was good!


{rowr! le crocodile}

So anyway, when I figure out what 0=∞ means, I'll be laughing (as my fiction prof Maureen would say), but until then, I'm just scratching my head.

Whatever happened to Joel?

Do you remember Joel, the young Teletubby-Nurse hating, Studio 60-loving, father of three who was scheduled for an allo (donor) stem cell transplant on June 13? Last week I caught up with his wife, Heather, in the waiting area. Joel recovered so quickly from the transplant that he spent just 22 days in the hospital instead of the usual 28+. Amazing! One week after his return home, he was back in action with his Torah study group. Joel is preparing to become a Rabbi.

Yesterday I was thrilled to see Peggy and R, a couple from Hawaii who are living at Hope Village while R undegoes treatment. Last time I saw them, R was about to go in for an allo SCT. (A year ago, he completed two back-to-back (tandem) auto SCTs, but relapsed after just six months.)

R's been "home" for two weeks since his discharge and he looked as tall, dark and handsome as ever, even behind his obligatory surgical mask. He usually wears flip-flops, so I was surprised to see him trudging in heavy cowboy boots. "The staff is giving him a hard time about gaining back weight, so he's going to try to trick them by leaving his boots on when he's on the scale," Peggy explained with a wink.

It's encouraging to see how well these transplant patients have bounced back, both physically and emotionally.

I am back

Haven't posted in some time, as I have not had anything major to report; I am still recovering seeing too many doctors each week and often very tired from all the medication.

My church home in Fort Worth, TX is holding a benefit to help with medical cost this Sunday.
www.espbc.com


Follow the link below to a TV news show I was a part of speaking about organ donation.

http://www.myfoxdfw.com/myfox/pages/Home/Detail;jsessionid=A7DE0CAA9AEC9C9640170C94057F96D4?contentId=181347&version=90&locale=EN-US&layoutCode=TSTY&pageId=1.1.1&sflg=1

I Hate Fancy Hospital

It is 11:30 and I should be on my way to my last chemo appointment, along with my friend S who flew in from San Francisco for escort duty, but Fancy does not have me on the schedule. In fact, I am not on the schedule until a month hence. I called this morning to see if I needed to be there at noon, my appointment time, or later, because I often wait and wait in the huge and distressing cancer ward waiting area. I also called because I remembered I didn't get a printout of this appointment, though it was understood I was coming in today at noon. Or I thought it was understood. After seven sessions on Mondays at noon (one on a Tuesday because of a holiday), and being told that Taxol is administered every two weeks, I thought it was obvious that I should be seen today at noon. But my nurse is on vacation, and I think her backup is on vacation, and given Fancy Hospital's tendency to overbook (worse than the airlines? I can't decide) I should not assume anything. But I did. I am very very very upset.

My voice cracks when I talk on the phone to the receptionists and chemo administrative director and the nurse who called me back after she was (allegedly) paged twice in 45 minutes. And so now it is 11:52 and I have been called back and told I have my appointment at 1. I can't tell you how momentous the last day of chemo is. It is, well, the last day of chemo. The end of the beginning. The end of feeling you are blasting the cancer away and now you are left up to your own devices and tamoxifen. P said her father became angry when his chemo ended and I understand why.

Funny Lady Returns to the Ice House in Pasadena

When Paula Johnson isn't serving as cancer correspondent, posting witty comments on Cancer Banter or creating clever communications for her clients, you can sometimes find her cracking up crowds with her stand-up comedy.

I missed her debut at the Ice House in March, but I'm determined to make it to "Chicks with Mics" on Thursday during Paula's return visit to Pasadena's comedy club. She'll be sharing the stage with a dozen other gals who desperately want to tickle our funny bones.

Will there be any cancer material this time? Paula tells me that she's "diversified" her act and will be yakking about cancer - just not MY cancer.

God willing and the platelets don't fall, I'll be there. I'll need a good roll in the aisle after five days of self-injections!

(Let me know if you'd like to join me.)

Next Steps

I'm back from my overnight at Hotel Hope, where I received a "conditioning regimen" of Cytoxan. I'm not suffering any side effects from the chemo, but I'm still groggy from the Benadryl and Atavan. As the anesthesiologist told me last week, "You're a cheap date."

Tomorrow I start a week-long round of daily self-injections of Neupogen, a drug designed to make the stem cells flee from the bone marrow to the circulatory blood. With just three doctor's visits, daily Heperan flushes and three-times-a-week bandage changes for my Hickman catheter, it will be a relatively "easy" week.

And then on August 6 we'll be ready to start harvesting stem cells. This will be like having a part-time job, albeit a very cushy one. I report for duty at 8:00 am and will sit in an easy chair for 4.5 hours. The machines will do all the work of collecting blood, sorting out the stem cells and then returning the blood to me, sans stem cells.

I'll be perfectly content sipping cranberry juice with one of those little bendy straws, munching graham crackers, chatting and reading books and magazines. God only knows how many days this can go on. Some people are able to produce enough stem cells in as few as three days, others can take up to ten days and some are never able to produce enough. Time will tell which category I fall into.

The End of an Era

For the past few days I've been obsessed about the big media news in town: the buy-out of the Chicago Reader, our city's leading alternative weekly, by Creative Loafing, an out-of-town chain that, from what I read, is not known for hard-hitting journalism or great writing. The first piece I had in the Reader was maybe in the late 1970s or 80s and I've been an intermittent contributor since. Maybe seven years ago I was part of a small group of freelancers who negotiated better terms with editors, and that made me feel more part of the newspaper and the freelance community. I've had my battles with editors over story ideas and the rhythm of my sentences (don't mess with the rhythm of my sentences) and the editors did decline to include this blog on its pages or site, but I am grateful that they published some of my non-mainstream work, and gave me deadlines when I needed them. About a half-dozen of the pieces in my essay collection were first published in the Reader. If you would like to be obsessed too, then I urge you to join what's become a town forum of readers and employees. It's in the comments section of Michael Miner's blog on the Reader site. It is hoped that the Reader's name won't change. It's disconcerting to read of an alt weekly in the chain referred to as "the Loaf."

But as the French say, after bread, art is the great need of the people. I think the French said it. I saw an exhibition on the saying in a Paris gallery in the late 1970s. All the sculpture was made of bread dough. According to Danton, "Après le pain, l'éducation est le premier besoin du peuple." Kropotkin says this, "After bread has been secured, leisure is the supreme aim," but I prefer "art" to "education" or "leisure." But maybe "leisure" is right, and thus, the supremacy of creative loafing over the art that is or was the Reader.

What I DIDN'T Do on Vacation

I didn't:

• Go to a doctor's appointment.

• Have a blood draw, transfusion, test or biopsy.
  

• Talk or think obsessively about the Big C.

• Do a single bit of cancer-related research.

• Huff and puff after a four-mile walking excursion.

• Pass out while single handedly flushing out my catheter line with Heperan.

• Wear my wig, scarf or hat while taking a hike through the redwood forests of Mill Valley.

• Feel self-conscious about the above.

BUT I did have a great time walking, shopping, eating and visiting with lots of good friends.

If it looks like a duck . . . .

According to two dermatologists, my sagging skin looked like, walked like and quacked like slack skin disease, but a closer look under the microscope revealed that I'm not that rare of a duck.

The biopsy reports show that the skin does NOT have T-cell lymphoma or any kind of cancer. The skin condition is definitely "abnormal" and Dr. Chang is still on the case trying to figure out why circumscribed areas resemble an aging elephant. He's requested several more tests to try to solve the mystery.

This, of course, is great news for many reasons, after the obvious "I don't have two forms of cancer." Could I have handled the pressure of being one in a billion or would I have turned into an insufferable "disease diva"? Here are a few of the demands I no doubt would have made:

• Provide six weeks of private sessions with a Pilates instructor before any photographs are taken for medical journals. (God forbid that photos of the bod generate as many "ughs" as the disease being photographed.)
  

• Hire Annie Leibovitz, not the attending physician, to take the photos.
  

• Incorporate an exotic background, such as a waterfall, or exotic animals, such as cheetahs or elephants, into the photo shoot. Avoid clinical locations like doctor's offices and labs.
  

• Stock the waiting room of doctor's offices with potato balls from Porto's.
  

B-watch & Komen-watch

B-watch
Our friend B spent last night on the floor next to his bed. His helper didn't show up last night and his cell phone was downstairs. The helper showed up this morning and got him dressed and into his scooter. B called me to come and plug in his new scooter. It took both of us about 20 minutes to figure out where on the scooter you plug in the plug-thing. I couldn't read the info booklet without my reading glasses, and B said it didn't tell you where the cord went. But as I said, finally we prevailed. You'd think that a manufacturer of scooters for disabled people would have a special easy way to recharge the battery of the thing.
B is advertising for a new helper. If anyone knows a reliable person who can dress and undress someone with MS, as well as do very light housekeeping, and, if possible, light clerical duties, let me know (in comments section). It would help if the person lived nearby--Lakeview or Uptown.


Komen-watch
Our friend S went out with Nancy Brinker when she was just a Homecoming Queen runner-up from Peoria. Now she's a Dallas socialite and founder of Susan G. Komen for the Cure, named for her dead sister. In today's post, Capitol Fax talks about Komen and contributions. You see how important apostrophes are when you read the last sentence. Does he mean politician's or politicians' cash?
Reports Rich Miller of Capitol Fax:

"Only days after Antoin 'Tony' Rezko was indicted on federal corruption charges last fall,[Illinois] Gov. Rod Blagojevich's campaign moved quickly to try to limit the fallout and gave to charity political donations directly linked to one of the governor's former top advisers and fundraisers.But one charity eventually turned down the tainted money and sent the Blagojevich campaign a check back in March for $44,846.03, according to state-mandated campaign disclosure reports the governor recently filed.Officials for the Texas-based Susan G. Komen Breast Cancer Foundation, now known as Susan G. Komen for the Cure, said they returned the money because they do not accept political funds. [*]Despite the Komen foundation's explanation, state campaign disclosure records for the past seven years show the foundation and its Illinois affiliates previously accepted $2,110 in politician's cash, ranging from an ad in a program book to fundraising tickets to outright donations."

In other Komen news: Earlier this month, the Komen gave $2 million to oncologist Insoo Bae of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center to continue to study the the interaction between environmental carcinogens and genetic risk for breast cancer. The Lombardi Center reports that Bae is looking at the way genes and environment combine to cause cancer. Specifically: "Bae will examine a range of environmental carcinogens – such as cigarette smoke, alcohol, and dietary factors – to identify those agents that increase the probability that BRCA1 defective cells will become cancerous." Komen needs to keep going after the causes of cancer, and spend less time and money tying pink ribbons around everything that breathes and everything that doesn't. The Bae research is good news for us Ashkenazim, those mostly likely to have a BRCA1 or 2 mutation in our genes. As for me, I'm waiting to hear from the jolly genetic counselors about what my blood sample revealed. According to them, I have an 18 percent chance of having a BRCA gene defect. I probably don't. It would be nice if I didn't. About 90 percent of Jews in the U.S. are Ashkenazi, from West, Central and East European countries. The rest are Sephardic, from Mediterranean and Arab countries. They're more likely to have mothers who belly-dance. We're the ones whose grandmothers spoke Yiddish. Yeah, yeah, I know that your German-Jewish grandmother quoted Goethe and didn't know from Yiddish. I'm speaking in general.

Airport Sign

Yesterday, as Henry and I were walking from the terminal to baggage claim at the airport in Honolulu, Henry said, "Hey, isn't that Tu?" It was my former co-worker from UCLA, Ying Ming Tu. I shouted, "Hey, Tu-tu!" He turned, his mouth dropped open, and he ran to give me and Henry a hug. He also just happened to be with Angela Oh, another friend from LA. I worked with Angela on her book, "Open," which talks about her work as a civil rights lawyer and her philosophies that have arisen out of that. She's also a Zen Buddhist priest.

Angela touched my hair and asked me why purple? I explained how I'm going to have chemo in a couple weeks and wanted to dye my hair a funky color before it fell out. I told her that I was just diagnosed with breast cancer. Her hand went to the exact place of the tumor without me telling her which breast or anything. She said, "Our meeting here like this was meant to be, I can feel it." She then called up a Zen master at the Chozen-ji International Dojo in Honolulu and asked Roshi if Henry and I could have an appointment to meet with him. It takes weeks to get an appointment, but Roshi agreed to meet with us on Thursday (tomorrow!). Angela said to go, climb to the top and meditate. She told us we'd have to wear long-sleeved shirts and pants, and I would have to take out my jewelry. I found this article on the dojo here: http://the.honoluluadvertiser.com/article/2004/Jun/13/il/il02a.html

At the moment of seeing Tu and Angela, I was so elated! Lots of people have told me to visualize the cancer leaving my body, to meditate, but I haven't felt like that would work. But now, with this completely serendipitous encounter at the airport--at the moment when Henry and I were coming, and Tu and Angela were leaving--I feel a sense of joy and encouragement and spiritual uplifting. Even Henry, who's not really into thinking about meditating and such things, looked happy. It was a really special moment.

Life after cancer........

For fun I thought I'd add pictures this time. I will continue more about my kids and their response to my diagnosis later, but for now I'm going to show you some pictures of myself and my life after cancer.

I recently backpacked with a friend at the Charles Deam Wilderness, we had a lot of fun and carried about 40 lbs. each about 10 miles a day (we are working on packing lighter!). We'd backpacked together several times before, but with a wilderness club. This was our first time backpacking without the leadership and experience of seasoned backpackers. We did great and didn't get lost!

I've always appreciated nature and the out of doors, but I do more so post cancer. I especially love backpacking as it is about truly living one day at a time. We didn't really plan where exactly we would hike or where we would camp, we just enjoyed every moment of every day. Nature (and life) at it's best.

The perfect campsite..........

Backpacking is a new hobby I've taken up since my cancer diagnosis. Since my surgery I've been on 4 backpacking trips, two to the Red River Gorge in Kentucky, once to the Appalachian Trail in Pennsylvania and this latest trip at the Charles Deam Wilderness. Planning to do many more!

Is it Wednesday yet?

Gosh, it's been days since I used words likes "platelets" and "catheter" in casual conversation. Here are five ways to pass the time until Susan's next entry:

1. Giggle over fashion disasters in Go Fug Yourself.

2. Get green(er) with eco-tips from Ideal Bite.

3. Create an anagram from your name. For instance, Linda Sue Carrier becomes (heh, heh) "surlier radiance."

4. Coo over The Daily Puppy.

5. See how tech support worked in Medieval times. (You'll have to read subtitles.)

The Million-Dollar Brazilian

Well, first of all, it's probably not a million dollars. It's probably going to add up to $100,000, billed to insurance. But the "hundred-thousand-dollar Brazilian" just doesn't cut it. Doesn't begin to conjure up that sexy gal from Ipanema. What I'm talking about, you've probably guessed, is the outrageous and barbaric practice of paying someone to apply hot wax to your pubic hair and rip it out. I don't know anybody who's had this done. Or rather, nobody's told me she's had this done. Probably I know lots of women, young women, very young women, who have undergone this procedure. I just haven't seen the evidence. According to an Esquire-Marie Claire survey last fall, 66 percent of women in their 20s have their pubic hair trimmed or waxed, and 18 percent keep it bare. Half of women in their 40s have their hair trimmed or waxed, and only 5 percent have it bare. Or clean, as some put it. A Brazilian, according to articles I've read, is either having every bit of hair yanked out, or leaving a "landing strip" or "Hitler's mustache." The practice is outlawed in the UK, which seems wise--so that a celebrity I've never heard of, who's the widow of someone else I've never heard of, jets to J. Sisters International Salon in New York to be waxed by one of the seven Brazilian sisters who should have been arrested at the border for importing this practice.

I subscribed to Esquire for the same reason I subscribed to Shape--because it was free, offered by Delta Airlines because the corporation didn't want me to cash in my points. In Shape I read a full-page ad I didn't quite understand, but slowly figured out was for a product that allowed you to wax your pubic hair in various shapes. The question is: Why? Beyond a passing attack of whimsy? Apparently, Shape readers are used to waxing themselves and it didn't have to be spelled out. According to Naomi Wolf, men want women to be bare because they want their sex partners to look like porn stars.

Cancer Bitch has never waxed anything, including floors and furniture, though in her youth she bleached her mustache and arm hairs. Now she doesn't have to because Adriamycin and Taxol have left her hair-depleted. She has two half-eyebrows, just a little hair left on her shins, and a threadbare little nest above her crotch. How can I say this delicately? There's a slit underneath the nest. It reminds her of the profile of a crocodile. The slit was covered for years and she forgot it was there. Forgot that her self was shaped like that, in front. In fact, Cancer Bitch saw a painting in the Ufizzi Gallery that showed just such a slit and she thought the painter had erred. She's surprised to see herself like this in the mirror. Her skin feels soft, very soft, velvety in fact, but all wrong.

Cancer Bitch has wanted to discuss this topic for a while, but has been afraid. She is afraid of attracting pornsters to this site. Also, she is non-tenured and non-tenure-track. About 15 years ago a colleague, who was an inspiration to the rest of us adjuncts because he had finagled a year-long contract that included health insurance, lost it all with just a few words. He appeared on TV with his girlfriend, either naked or having sex or both. It was part of an interview, in which he mentioned, unfortunately, where he taught. Alumni from the department were upset and made it known. And soon there was no more lucky colleague with a contract and health insurance at Well-Regarded University. There were few traces of him, either, except here and there when cleaning out a file drawer, we'd come across a suburban phone directory with his name on it.

My insurance comes from L, not the university. But I'm afraid that the president of WRU will read this...and what? Is Cancer Bitch puffed up with her own importance? She's insulting the president by imagining him to be narrow-minded. He has a contract. She doesn't. And that makes her nervous. But this is why the second wave of feminists fought, so that in the early 21st century, a Cancer Bitch could write about her loss of pubic hair with impunity.

If there's one thing that cancer should be about---it's partying!

This was a really fun weekend--and I think everyone in my family soooo needed it! Thanks to everyone who came last night:

Dan
Bob (I mean, George...no, I mean Bob)
Larry
Roy
Gordy
Jim Julie + kids
Marty Letti + kid
Karen + kids
Heidy Greg + kids
May
Allan
Andy
Chris
Rob Tracy
Mark
Jamie
Jim Lou-Anne
Leeanne
Amy
Karrmen
Michael Anne
Debora Lynda
Linda
Joy Hillary
Paige Hart
Jenn
Katie
Janice
Jamella
George (the real george)
Coll Simon
Mama Baba

If you're not on this list--so sorry! I was wasted and all, that's my only excuse!

There was a lot of laughter and tears and drinking last night. I was so touched by all who showed up and also by those who couldn't make it but who emailed me their regrets. Here are some highlights--including the highlights in my hair! (Thanks especially to Jamie--who applied TWO bleach kits to my hair yesterday, down the roots while somehow miraculously not burning my scalp; Jenn and Katie--mistresses of the dye; and Katie once again, for packing sausage, cheese, crackers, wine, and god knows what else in her purse, along with loads of latex gloves.) Jenn was the photographer extraordinaire for these shots.

Me and bleach expert, Jamie


Me with Paige and Joy enjoying the mixture of fumes from my head and the wine


Sausage, cheese, dates, and crackers spread out on my toilet


Emerging from my bathtub...


It's not what it looks like--Amy's just drying my hair while I'm drinking wine while straddling my toilet...honest!


Karrmen and Amy stylin', while Saya and Jordy look on.


All dressed up--and yes, I am wearing fur in the middle of July! That's cuz you can do that in Vancouver, where the weather is sucky yuck.
Okay, so my dress was so freakin' open the whole time, and maybe I could lie and say that it was some statement about breast cancer, but let's be honest--I was completely shitfaced and had no idea that my white bra was completely hanging out, Britney Spears-style.

Me, with three ladies that rock: Jenn, Katie, and Chloe (who at the tender age of almost-four already looks completely ashamed to be my daughter)


The intricacies and complexities of my new hair!

Telling our kids

I made the decision to tell my kids the truth after I was diagnosed. It was tough. They of course asked "Mom, are you going to die?". They knew that people died of cancer.

At the time I'd been told there were no treatment options. I wanted to continue to be honest. I'd read the stats in regards to signet ring appendix cancer. From what I'd read at the time, it appeared long-term survival was only 10%. I didn't know if I was going to die. It actually seemed rather likely.

I told my kids that yes, some people died of cancer. But I also told them that many people also survived cancer, that many people didn't die. I told them that I was a very strong person, that I was feeling very well, and that I was going to do my best to find good treatment and to live a very long time.

It was the best answer I had, and it was an honest answer.

I knew what would happen next, that they would go to school and tell their friends over lunch that their mom had cancer. They did, and their friends told them of relatives and people they knew who had died of cancer. Since we were all being honest and open, we were able to talk about those lunchroom conversations at home.

One good thing about having a rare cancer...when my kids said their friend's family member had died of brain or some other cancer, I could honestly say "Well I don't have THAT kind of cancer, I have appendix cancer". Cool thing was that none of their friends knew of anyone who had died of appendix cancer.

I guess there are some good things about having a cancer that is rare. For my kids, it gave them hope. They understood that people died of many kinds of cancer, but they couldn't find a single person who had died of appendix cancer.

To be continued......

I thought she'd never leave!

Here's hoping Susan is having a food-filled funfest in San Francisco.

She said she was not bringing her laptop, and I believe her. But I wonder...will she be able to resist checking Cancer Banter from a public computer?

I predict she will post an entry or comment...before noon...on Wednesday.

What say the rest of you?

Or are all of you offline until Ninnie Choo Choo's return?

"Order + No Order = Still No Order"

I woke up still sobbing from my dream. In the dream I was playing a simple game of softball with friends----Henry, people from CCHS (Colleen, Hayne, Jan), some other professors types, friends from college. They were playing kind of half-assed. I wasn't sure what my position was, or when it was my turn to pitch because people were just moving around. When I asked some people if they knew what they were supposed to do, they said yes and told me what their job was. Others said, who cares? We're just having fun. I got fed up and started shouting, "You can't have it like this! You kinda have order but don't. Order plus no order is still no order! It's mathematical!" And I ran from the game.

I stood on top of a hill overlooking water. I saw my friend Mae talking with some others: my cousin Teresa whom I hadn't seen in a while, people from grad school. She saw me, but I didn't want to see her. I just started crying into my hands, feeling excluded and alone. Mae started walking toward me, and that's when I woke up sobbing, with my shirt soaked through with sweat.

In real life on Friday, I called my friend Mae but she wasn't there, so I called Irene. I told her how useless I've been feeling lately. I have several projects that I'm in the middle of and trying to finish, but during the day I just feel like sleeping. I haven't been sleeping much during the night (except for now, because doc gave me some pills), so during the day, I'm pretty mopey and tired. Irene said it must be hard for a Type A gal like myself to come to terms with the huge potential that for a chunk of time, I have to chill out and rest. I'm the ultimate multitasker and juggle all sorts of stuff. Plus, I take care of my family, so to have to accept someone having to take care of me is a huge challenge.

The dream is an obvious one in which I'm freaking out from having to lose control. It is true--half-assed order, to me, is still no order.

Last night, my friend Jamie made a surprise visit from Seattle. I was one of the MC's at Rhizome Cafe's first anniversary party, and while I was at the mic, Jamie walked in the door, so it was so nice to see him! I really need to see a friend now! He and I talked for a while about my treatment options. He's lost several people in his family to various types of cancer, so he knows a little about the lingo and world of the big C.

I'm worried about the trial treatment. Basically, I have to live six more months with the cancer before surgery since I start off with chemo. The question is, why not do the surgery first? Why not try to cut out that shit before doing chemo, like they usually do? One of the reasons the doc said was because this way, I get the really good chemo, the extra medicine, because it's part of the trial. She also said that this way, any microinvasion would be targeted and hopefully got rid of. So I need to do chemo first so they can measure the size of the cancer as I'm getting the chemo (one of the main things about the trial--a trial isn't the standard treatment; a trial is like an experiment in other words--they're researching something, and I'm part of the research, while receiving treatment).

But it's the lymph node that's most worrisome. Even though my lymph node biopsy came back negative, it's still obviously swollen with something and they want to take it out. I wish they would take it out now and test it rather than wait six months. If the lymph node has cancer, that's bad--that means that it's trying to spread to the rest of my body. So if one of my lymph nodes shows possible invasion now, can they please take that motherfucker out???

I don't like feeling helpless. Jamie asked me if I have any instinct about which route to go (chemo first or surgery first), and I don't. I feel like here, I don't have a preference (other than taking the node out asap), nor do I feel sufficiently informed to have an opinion, so I'm just leaving it to the experts. But of course, I don't feel right about that, especially since I kinda feel all guinea piggish.

No Order.

me me me

this blog is about me. i was going to edit out that not-so-hot picture of me, but then again, why? after all, much about this particular type of cancer has to do with vanity/identity issues. my breasts--do they make me? no. but they got me my husband; they fed my kids; they almost got me arrested when i jumped in a lake in wisconsin after the beerfest in my skivvies; they got me ridiculed in junior high for not being there; they've been the recipient of push-up bras and fancy lingerie. they've been through so much. and now, if i don't deal with them, they could kill me.

so as unattractive and unartsy as my b/w pic is, it stays. especially since the privacy of my breasts has been stripped anyway, with all those strange hands touching them lately.

i feel meek and i feel bold; embarrassed yet unapologetic.

Things that will change

My hair, my killer boobs, and me.

Don't Do It Yourself or Trayf Sabbath

I've been eating high protein, low fat and have been cooking fish and chicken at home. I was tired to salmon (after having had it twice in a week) and rode my bike to the Food Hole to get some shrimp. That's the only other kind of seafood I know I like. I don't know fish very well. I was allergic as a child, and vegetarian in my crucial learning-to-cook days. At the fish counter I went for the wild-caught shrimp, the smaller, unshelled ones. I brought them home and deveined (a euphemism for pulling the guts out) and shelled (or de-shelled) them. I was grossed out to be dealing with the raw flesh and kept thinking of how my father, who kept kosher, used to shudder when he saw shrimp and say they looked like worms. They do. At the same time I had an atavistic urge tear into them raw. I didn't. This explains the appeal of sushi. I boiled the shrimp and mixed them with organic cucumber in a soy-ginger-garlic sauce. Household hint from my friend D: Peel a ginger root and cut it into chunks and store in refrigerator a jar filled with sherry. They'll last a long time. The shrimp were OK. The cucumbers absorbed too much of the marinade, and the shrimp, too little. The kitchen smelled very very fishy and I was in a hurry and just did a basic, or un-basic clean-up. I had told my friend B I would come by after 8 to go to the Printers' Ball, the third annual festival of literary magazines sponsored by the Poetry Foundation. It was at the Zhou B. Art Center at 1029 W. 35th St., and it seemed like the best way to get there was to take the Halsted bus all the way down. B is in a wheelchair and it's too hard for one person (especially one with cancer) to help him with the transfer from chair to car to chair to car to chair.

We ended up waiting almost an hour for the bus. We were joined temporarily by a tanned woman with scars on her nose who was 58, same age as B, and was wearing a long-sleeved T-shirt commemorating a sorority pledge week, in which I doubt she took part. At first I thought she was drunk but she might have just been friendly and slightly out of it. She seemed like an addict of some kind. She had been given a CTA pass at Thorek Hospital and was going to Diversey, which is just a mile south. She had been married 25 years (as had B) but her spouse died three years ago of lung cancer. He smoked Virginia Slims for 40 years, she said. B still has his wife. She's in Mexico at the moment.

Finally the bus came and it wended it slow way down to 35th Street, the middle of Bridgeport, heavy Daley territory, though Daley the Younger now lives in the South Loop. Young people holding magazines were coming toward us. It seemed like a miniature city, with short buildings. A bank, auto-supply and repair stores, a hot dog place that looked straight of out Central Casting for Small Town 1954 with its hand-painted signs. There were guys carding people at the door, though the Ball had been billed as an all-ages party. We went around back to the ramp. Inside there were tables with what was left of stacks of free magazines. On the wall were the Zhou Brothers' paintings though I didn't get much of a chance to look at them because I was intent on using the bathroom. There was just one in the bar/cafe. I talked to a young woman waiting and at one point she put her hand over her mouth. Did that mean I had fishy-garlic breath? Maybe. (L later told me about an experience he had Friday afternoon on the L. He was sitting next to a woman and saw that she had her sweatshirt held up to her nose. As soon as a seat was available across the aisle, she ran to it and lowered her shirt from her face. He smelled around and smelled himself and came up with nothing. We think it might have been garlic. Once after I'd eaten a lot of garlic we went to the Art Institute for a crowded show and heard a nearby little girl ask her mother, What's garlic? We assume it was what was on pre-Cancer Bitch's breath.)

I went back out the main room and a young man at the mike was saying that everyone had to leave. He said the police wouldn't say why. I found B at the bar and there was a stout blonde cop yelling at everyone, You have to leave, you have to leave. A kid at the bar said to her: Charge card. She said: What? He said: I'm waiting for them to process my charge card. She yelled at him for being so cryptic. No one knew what was going on. It was supposed to last until 2 and it was only 11 or so. As we went back down the ramp, a cop told us there was a minor infraction having to do with the number of people. This made no sense to me. There was plenty of room to move around (87,000 square feet), and the cops were the ones at the door. Didn't they count the number of people coming in? I went to the first Printers' Ball at the Hot House, and someone was keeping count of the crowd, because people were lined up on the street, and were being let in only as others left. C.J. Laity of ChicagoPoetry.com opines about the early closing: "Chicago's finest, what the hell is your problem? Go find some real criminals to torture; and let a few people have some fun once in a while." A more measured report can be found at Chicagoist, which quotes others saying there were "multiple liquor license violations."

The north-bound Halsted bus was right there waiting for us and we had a relatively quick ride home. B had called the helper who normally comes at 10:30 or so get him into bed and told her not to come then. He'd left a message for her to come later, but didn't hear back. So I helped him off with his pants and shirt and socks and helped slide him into bed with a special polished sliding board. It took a while.

I got home around 1. L had cleaned up the kitchen because he couldn't stand the smell. I began to understand the suburban legend about the woman whose husband left her. He got to keep the house, and her last night in it she cooks shrimp, stuffing the shells inside the curtain rods. He can never sell the house because of the terrible smell whose source is never found.

This morning I watched a video on-line about shelling and deveining, and learned that the way I'd done it was correct. Some people say you don't have to devein small shrimp, but I think that even when boiled, shrimp guts are not good for people going through chemo. I spent a very long time with the rest of the shrimp, boiling them then shelling and deveining. It's less slimy and smelling to cook them first. Then I mixed them with more cucumber and marinade. It's not worth it: Buy the shelled and deveined.

I feel slightly achy (This spelling looks strange because I have a friend named Achy, pronounced "ach-y," not "aky") and tired because I couldn't sleep this morning, but nothing like the last two Day 5s after Taxol. Is it the Vitamin B? Yesterday's acetaminophen? Or, as the doctors say, just one of those things?

Vacation from Blogging?

Didn't I say that I was going to be taking a "vacation" from blogging?

Just goes to show ya' that this blog isn't an obligation or a chore. It's something that I truly enjoy doing. Writing it helps put things in perspective for me. And reading your comments helps bring that perspective to a whole new level. ("Surrender" and "Petty Woman" are perfect examples of that dynamic.)

NOW, this really is my last post for a few days because I'm not bringing the laptop to SF with me.

We're All Connected

Many of my friends have told me that they start their days reading Cancer Banter. A few have even sheepishly admitted to the "entertainment value" of the blog. Believe me, I'm honored, not offended, when I hear this.

I also like to start my day by checking in on Brad V. Williams, a 46-year-old Texas teacher with Mantle Cell Lymphoma. Like me, he has the nasty blastic variety. We met online when he responded to my post on the mantle cell lymphoma list serve a few months ago. (And, no, the list serve is not a dating service for cancer patients.) Since both of us started Hyper CVAD at around the same time, it's been fascinating to follow his journey and get to know his family. He and his wife Tami and daughter Kati sound like the kind of caring, fun and friendly folks you'd want to invite over to a backyard BBQ.

Just like on my site, the comments can often be as enlightening as the posts. A recent commenter included a few tips from Thomas L. McDermitt's "Daily Survival Kit for Serious Illnesses." Another commenter included a link to a site that listed all ten tips.

I clicked on the site faster than you can say "cure for cancer." I was especially intrigued when I read point nine, "Just for today, perhaps I can take heart that we are all connected." I truly believe that we are all connected and that, as the bumper sticker reminds us, "There are no coincidences."

With this in mind, I shouldn't have been surprised to click on the home page and find that the site, Support 4 Change, is the work of Arlene Harder, an Altadena therapist who lives just a half block away on Boulder Road. When I saw this, you coulda' knocked me over with a catheter.

I first surfed into Arlene's site more than a year ago when I was researching books about "letting go" of our adult children. (I'd also like to write a book on this topic.) Before the New Year, I emailed Arlene and introduced myself. We both agreed that we'd like to meet for coffee but, as another bumper sticker reminds us, s*** happens, and we never made that date.

I'd almost forgotten about her . . . until now. I think it may be time for that cup of coffee.

Going Home, or not

Last night, I spent a couple hours scanning and touching up pictures of my brother-in-law for a video montage at his memorial service. Henry is picking out the music because he and his brother are, like, a decade or more older than me, and I don't know what old people used to listen to (joking!). Anyway, ever since George passed away two weeks ago (holy shit--has it only been two weeks?), all the family, especially his wife Carole, have been focused on the arrangements, thinking about what George would have liked. Got me thinking about my own death, which folks, I hate to break it to you, is going to happen--just hopefully not for another 40 years or so.

Okay, so I don't plan on dying any time soon, but here it is--NO WAY, NAH-UH, NEVER IN A MILLION LIFETIMES do I want to be buried in my hometown, Mifflintown, PA. I say that now, in front of whoever the hell is reading this--as my absolutely, positively last word on the matter. Sure, it's where I grew up, and it's pretty, and it's peaceful, and all my white family lives and dies there, but growing up there I felt so trapped in such a small town, I couldn't wait to hightail it out of there. I mean no disrespect to my family whatsoever, but they know it's not the place for me. And I want to be cremated (I am, after all, a fire sign and a wood rabbit, so back to ashes for me). As for my ashes, what to do with them, I haven't thought about that all that much yet.

Word travels fast in my small town. And my extended family takes up a big piece of the population pie there. I think by now, the whole town knows I have cancer, and my name has been uttered and shouted in prayer circles and placed into Bibles. Which is cool because shit, I need all the help I can get, even though I myself don't subscribe to any religion. If people say they are praying for me, I'll take it.

On a completely different note, Henry's having second thoughts about this trial. One of the main areas of concern with this trial is that because they want tissue samples from the tumour area to see if chemo combo is causing any shrinkage, I have to do chemo first. Henry really wants us to consider the normal way of going about things, which is to do surgery first. So he read up on it last night, we'll call the trial nurse with our questions, and think about it some more. I want to make sure we're confident about what we're doing, cuz this ain't like buying a car or something, where we might not be satisfied with a term here or there. Henry is the hunter and gatherer--of information. Me? I have a boob that's hella angry with me.

My pity party

Today was a downer. Not for any good reason. Today could have been like yesterday or the day before, but for some reason, I didn't seem to want to do anything but burrow in my bed.

I got an Air Cast today. When I had my bone scan done yesterday, the technician saw a stress fracture in my leg and asked me if I was a runner. I guess so, I said. So now I have this moon boot thing. I kind of hate it.

I really kind of hated the bone scan technician. Because it's like I'm lying there, completely still, while this huge photocopier-like thing very very slowly went over my body to take pictures of the radioactive material to see where it's gone and stuff. So I'm lying there--(there's an itch in my ankle--ignore it--there's an itch on my back--stay still). And then the technician started laughing to herself, presumably over some email she was reading, and she kept doing that. I'm like, Can she see the murderous rage in my brain right now? Is my brain fucking glowing like a goddamn strobe light? Cuz I want to kill her.

I also got sleeping pills today because the sleep isn't that great lately. Talked to my parents on the phone. I feel bad when they have that tone in their voice, like they're worried about me because they usually aren't.

Cancer Banter on Vacation

I'll be taking a few days off from blogging (and fretting and researching) while I'm in San Francisco from Sunday through Wednesday.

At first, I was reluctant to visit SF because I won't be able to indulge in two of my favorite activities: walking endlessly up and down the hills and through a dozen neighborhoods in a day (a challenge with low hemoglobin) and luxuriating in the communal baths at the Kabuki Japanese Spa (a no-no with the catheter). But nothing's stopping me from putting friends and food on the front burner.

Mary's flying up with me and we'll have brunch with Ed and Anne in Oakland before driving up with Kim to see her work-in-progress renovation in Mill Valley. Then we'll cap it off with a late dinner at the Slanted Door in SF. And that's just Sunday!

I'm also looking forward to seeing some other good buds - Barbara, who's driving in from the Sacramento area, Karen (and maybe Ken) who are taking the BART in to join me for lunch, and Bob, who lives in the city.

Dr. Chang will be calling me with the results of my skin biopsy on Monday, so I think I'll ring my faithful cancer correspondent to see if she can post an update for me.

Until next week!

Pre-Chemo Party--come colour brandy's hair!

Well, apparently, the three weeks I had before I start chemo aren't three weeks (is that grammatically correct? i can't tell. i mean, "three weeks" is one unit qualitatively speaking, so should it be "isn't" rather than "aren't"...?) anyway, the rest of my tests happen on July 30th and 31st, with an appointment to go over the results on August 1st, and from what the oncologist said, the chemo could start very soon thereafter. So, it's possible that my chemo will begin at the beginning of August.

Henry and I are going to Hawaii on Tuesday through Friday, and then Henry's off to LA for his brother's memorial service. The only time for a pre-chemo party is THIS SUNDAY, JULY 22ND. If you are in the Vancouver area and would like to see me before toxins are flushed into my body, please come to my house this Sunday. It's a cheese / wine potluck--and we will also bleach my hair white and dye it god-knows-what colour! A fun art project for all!!!! 6PM my house. If you don't know where I live, email me! And suggest a colour! I'm leaning toward electric blue, but am open to suggestions!

Waiting for the Tsunami

This is Day 3 after chemo, so the side effects are due to kick in: depression/anxiety and bone pain. But they haven't. I slept a lot today because I was feeling run down. And then rode my bike and got some work done tonight. But. The side effects aren't here yet. I'm taking medicine for the neuropathy (finger and toe numbness) but nothing for the bone pain. But it's not here. I'm waiting.

I can't feel the cancer, so the chemo and side effects take the place of the cancer. But not yet.

GREAT News!

According to the CT and PET scans, I'm in complete remission. And the bone marrow biopsy shows no sign of the dreaded myelodysplasia.

We're just waiting to get the results of the skin biopsy from Dr. Chang to figure out if and how the final diagnosis will affect future treatment. I'm now scheduled for a night at Hotel Hope for Cytoxin on Thursday, July 26, right after I get back from a few days in San Francisco.

Hallelujah!

Aw, Shucks, Gee Thanks, Y'all!

Ever since I sent out the email about my diagnosis and blog, many people have emailed me such kind thoughts. For reals--I'm going to have the most ginormous (that's a real word, btw) party in the world when I get my new boobs, and you're all going to see them whether you like it or not. It's going to be a BOOBS OUT party! Woohoo! Something to look forward to!

I'm radioactive right now. I got a call this morning to take my butt on over to the hospital for a bone scan because they had a sudden cancellation and could fit me in. So they injected me with radioactive isotopes, and I have to go back soon for the scan. The isotopes will travel to "hotspots" in my body where there's increased cell activity, thereby providing another picture of where cancer has possibly spread. I'm NUCLEAR (in America, we say Nuke-u-lar--get it right, Canadians!). There was this sign at the reception that said if one was going to travel outside Canada in the near future, to let them know so they could give you a letter at security at the border explaining why you're all nuclear. Cool.

Burning Hunk of Boob

I just woke up--guess what? I still have cancer. I *hate* that! When's that gonna stop happening?--when I wake up in the morning and suddenly, I remember it's for real...??? It's weird--it's like when I eventually sleep at night, my mind just tries to repress the hell out of the reality so that when I wake up, it's a shock all over again, like in the movie Groundhog Day. Weird!

Last night, my tumor burned. I'm not sure if that's supposed to happen. No matter if I lay on my side or on my back or even when I got out of bed and stood up, the big tumor, the one that's obvious to the touch, was burning and had shooting pains. I should call and ask the nurse about that. Maybe it's just that freakin' big.

I apparently qualify for a trial for a more aggressive type of chemo, so I have to call them today to agree to be on the trial. You know what I really got a kick out of yesterday? The prescription they gave me for a wig. Cancer does have its perks!

Talk About a Cliff Hanger

After the successful insertion of my Hickman catheter, a nurse called Dr. Forman to confirm that I would be admitted as an inpatient.

I wasn't too surprised to learn that I would not be admitted and would not be receiving my prepatory infusion of Cytoxin. At this point, I can only speculate on the reasons, and, as I hinted in my post this morning, most of them have to do with my inability to be a candidate for an auto (self) stem cell transplant.

I'm scheduled for a blood draw and consultation tomorrow afternoon and will get the next installment on this cliff hanger. And, yes, I'm getting better at living life as a page turner.

Pretty in Polka Dots

I willl soon be the proud owner of a brown polka-dot, empire waisted dress with cap sleeves. As soon as I woke up from my anesthesia-induced stupor, I called the store and asked them to put it on hold for me.

Piper Robert, if you're still serious about buying the dress as a birthday present, I'll send you the bill for $600. It's a good thing it was on sale for 50% off. JUST KIDDING (about the price and the bill)! I don't want to give you AND George simultaneous heart attacks.

Thank you again, dear friends, for all of your supportive, loving comments on the blog, by email and phone.

This Sucks More Than I Thought

Just got back from my oncologist appointment, which lasted two and a half hours. They had lots to say. Apparently, most women going in for breast cancer have one lump requiring surgery and radiation or some such. Me, I have three--three confirmed, I should add, as the doctor said--which cover a large portion of my breast. When the docs said the word "mastectomy," it was kind of hard to hear. Sure, I've been joking about it, but to actually think of it as something that's become my reality, it was sort of like, oh shit.

So in the next few weeks, I'm going to have a bunch of blood tests, bone scan, chest x-ray, ultrasound and god knows what else done. Then start my first round of chemo. I'm going go through chemo for about six months. Then the mastectomy (hopefully, some miraculous shrinkage will occur so this won't have to happen), and then radiation. There goes about a year of my life.

This is really fucked up. Like, for real. Henry was good--taking notes and asking questions. I'm glad to see that those years at Princeton didn't go to waste. He even got to give the doc a quick lecture on the history of migration in the Pacific region. :)

Well....well. Okay, so like everything else, I must deal with this with the same gusto as ever!

Me and Cancer--Not a Love Story

How did this all come about? How did I discover the lump of coal in my boobie? One day in March, about four months ago, I felt a little tenderness on what felt like a ridge on my right breast. It bothered me for about a week, and then I went to see my family doctor.

The way the medical system works in Canada is that you go to see your family doctor for everything, and then s/he refers you to a specialist, orders tests, and all that other junk. It doesn't cost the patient anything in most cases, and the doctor just gets paid for your visit.

So I went in, and Dr. H. felt my boob a few times, and said that all he felt was "fullness." I'm not familiar with that medical term, but I guess it was full. Whatever that meant. He said it was nothing, wrote down "benign appearance" on my chart, and told me to come back if it got worse. That was on March 26th.

I went about my business, went to Asia, came back--lump still there. I could still feel it, and it was tender. But one night, there was a shooting pain in my chest where the lump is, and I'm like, really, that can't be normal. In terms of size, it was about the same. So I went in the doctor's a second time in the middle of June.

But Dr. H. wasn't there. Instead, there was a nice lady named Dr. Shintani. She examined me and told me that it was some kind of cyst, probably benign, and she gave me a requisition for an ultrasound. She said they'd probably just drain it and that was it. She also told me that it might take 3 months to get that ultrasound appointment.

Perhaps because of my age, both Dr. H. and Dr. S. weren't so concerned that it was cancer. But at least Dr. S. had enough sense to order me an ultrasound. I still don't know why Dr. H. didn't do that in the first place, OVER THREE MONTHS AGO! It doesn't cost him anything! Argh!

Anyway, luckily, I was able to get an ultrasound appointment in two weeks. So I went in for my ultrasound on July 5th.

I watched the monitor and saw three obvious black blobs--two larger ones near the surface, and one small one deeper down in my breast. The radiologist came in and was concerned. She said that I was going to do a mammogram right away as well.

So I did the mammogram--and then another one, which was more magnified, and that was that. The radiologist, Dr. Gordon, said that the Women's Hospital was booked full for the week, but that she would get me in first thing Monday morning for a core biopsy.

When I got there at my scheduled time, 7:30 am, the center was closed. They didn't open until 8 am! About a couple minutes later, the receptionist walked in, and they were expecting me right away! They basically opened up for my appointment, half an hour early.

While I was getting ready for the biopsy, Dr. Gordon told me that they saw a lump in my lymph node during the mammogram and that she would biopsy that site as well. She froze my armpit and used a regular needle to dig around in there--which didn't feel all that great. Lots of nerves in the pit, so it was kind of uncomfortable even with the freezing.

Then she began the core biopsy. It's like a big needle that they attach a stapler gun type thing to. So she stuck the needle in (after freezing my boob, of course), positioned it according to what she saw on the ultrasound, and fired away. It sounds lile a stapler gun. It was all fine until she went to get the small cyst deep down--the freezing didn't exactly find its way down there, so I felt that one. Ouch.

Three days later, my family doctor called, and I went in and was given the diagnosis, which was pretty vague. I just have cancer. That's all I know.

I have to say that things are moving so much more quickly than they should. Everything has been expedited for me, and I don't know if that's because of my age, or if it's because of my stage (which I don't know right now), or both. So it's nice to get the attention right away, but it also makes me think crazy thoughts, like, "is it that bad?"

I guess I'll find out later this afternoon.

4 hours and counting. . .

til I eat the apple of knowledge at my first oncologist appointment. I've had the weebles in my stomach ever since I woke up. Last night's sleep wasn't great. I took two of those tiny Atavin pills and felt whoozy, but I couldn't actually fall asleep. So I stayed in that half-state of sleep that sucks--where one part of your brain wants to shut 'er down for the night, but the other part that's assigned to freaking out is freaking out. Sucked.

My kid Mylo is feeling my elbow right now. He has this thing where he likes to feel elbows when the arm is straight and the skin is loose. It's kinda freaky, but it makes him feel better. He has a big grin on his face.

Fucking cancer. Whatever it is, it will die!!!

A Night at Hotel Hope

I'm taking off for Hotel Hope this morning to have my Hickman catheter installed as an outpatient under general anesthesia. I'll be discharged and then readmitted as an inpatient so that I can receive a dose of Cytoxin (CTX) chemo overnight. We're moving forward with the steps for an auto stem cell transplant even though we aren't 100% sure that will be the direction.

I'll be discharged again on Thursday late morning/early afternoon, only to report back later in the day for a blood draw and consultation.

I'm looking forward to Friday, which will be the first day in two weeks in which I haven't had at least one doctor's appointment or test.

On Monday of this week, I picked up the year-old biopsy slides from my former dermatologist. She asked if I could pop in to her office so that she could take a quick look at my skin condition. I could see that she was getting very excited by my skin and then admitted to me, "In a given week in my practice, I see the same 10 conditions. In a given month, I see maybe 20. But this is once in a lifetime." I'm glad I made her day.

Later in that same day, I returned to Dr. Chang's office for a skin biopsy. He couldn't wait to review the slides that I brought with me and immediately excused himself so that he could take a peek under the microscope. He came back and announced, "I disagree with the original diagnosis of granuloma annulare." The plot thickens. He also made arrangements to have the original lab send the "block" of the biopsy (I still don't quite understand this concept) to CoH for another pathology report. Very thorough.

Ooh, look at the time. I gotta' pack!

this wacky cancer business

I have my first appointment with the oncologist tomorrow. Today, my parents called and asked if I heard anything from the doctor. I lied and said no. Why? I haven't no idea. Doesn't make any sense to me. But it was kind of like this juvenile impulse--like when parents ask their kids what they did at school and the kids say, "nuthin'." I guess it's also kind of like now, they're worried about *when* the doctor will call, which might be slightly better than worrying about the upcoming appointment and what will be said? Yeah, I don't know.

Honestly though, I feel pretty much the same, except everyday, I wake up, walk to the bathroom, take a piss, and say, "Shit, I have cancer." But really, it can't be that bad, can it?

On the upside, I had an idea that if I have to get a mastectomy or something, I'm gonna get some nice fake titties and make a t-shirt that says, "Bionic Boobs." That'll be really hot, especially with the new Bionic Woman series starting in the fall.

Cancer & the Corporation

Just when you thought that breast cancer was the only cancer with corporate sponsorship with questionable motivation and focus--here comes a story from the New York Times on what happens when skin cancer joins with Neutrogena. I read it today in the Chicago Tribune, which cut the 1,200-word story in half. (See NYT story in Comments section.) Headline: "Doctors Balk at Cancer Ad, Citing Lack of Evidence." Neutrogena paid for a public service announcement on skin cancer, to run in 15 women's magazines this summer. The message: Use sunscreen and "if left unchecked, skin cancer can be fatal."

T'ain't that simple, say public-health doctors. Says one: "We have some pretty good evidence that sunscreen will reduce your risk of the less lethal forms of skin cancer. There's very little evidence that sunscreens protect you against melanoma"--which causes most skin cancer deaths. He adds that even though more more people are getting skin cancer screening, the incidence of melanoma has risen.

The American Cancer Society came up with the ad message and one ACS official says, "We've taken some license."

Neutrogena is a division of Johnson & Johnson, "whose sunscreens carry the society's logo," the Times points out.

Some of us are old enough to remember the Johnson & Johnson ads urging us to use baby oil to tan when we lay out in the sun. And that's what we did. But apparently we don't have to feel so guilty for it, because even if that practice makes us more vulnerable to skin cancer, it's not the kind we'll die from. So that's good news.

Meanwhile, Cancer Bitch slathers on sunscreen for reasons of vanity. She has light patches on her hands that don't tan. It's called vitiligo. And is the least of her problems. Still the patches show up more in summer (as the adjacent skin tans, despite the sunscreen).

What do we tell the kids?

Over the past year since I've gone on-line with my story and web site, I've heard from over 200 people newly diagnosed with appendiceal cancer. Almost all of us are diagnosed as Stage IV. We all have advanced cancer.

I have been in contact with many women who are mothers still raising young children.

When I was diagnosed my kids were aged 10 and 11. All I wanted and prayed for was to be alive long enough to raise my kids to adulthood. To see them turn 18, to see them finish high school. If I only lived that long I would see my life as full and complete. I did not want to abandon my children. I did not want to cause my children that pain. Some women I communicate with have children who are infants and toddlers, they only hope to live long enough for their children to be able to remember them.

At some point we have to make a decision about what to tell our kids. Mine were told the truth early on. They knew from the beggining, even before they were told, that something was terribly wrong. I'd had surgery before, this time was different. The phone rang off the hook, their dad was crying. It was the first time my kids had seen their dad cry, "He sobbed, Mom, he was really crying". Suddenly there were lots of messages on the answering machine every time they came home. For the first time my husband asked my kids to pray with him because mom was really, really sick.

I've know some who have decided to minimize the details, to spare their kids the truth. "Mom has a really bad tummy ache and the doctor is going to try to fix it". I know of cases where that has backfired. One five year old approached his mom one day and asked "Mom, do you really have cancer??" I think if kids don't overhear conversation, they still know something is terribly wrong in their home.

I'll talk more about how my kids handled this in my next post.

Petty Woman

Yesterday I treated myself to a visit to one of my favorite clothing boutiques in Pasadena. During their semi-annual 50%-off sale, the prices begin to enter the realm of affordability.

I tried on a feminine, empire-waisted, brown and white polka-dot dress with cap sleeves and a scoop neckline. As I twirled in front of the three-way mirror, I felt, well, pretty. The cap sleeves floated gently over the slack skin on my upper arms but revealed the PICC line on my right arm. No problem, I thought. That's getting yanked out on Wednesday.

But then I remembered that the PICC line is being replaced by a Hickman catheter in my chest. Instead of the two inch plastic tubes that dangle from my arm, the Hickman will feature tubing that's long enough to serve as a Boogie board leash. So much for the feminine scoop neckline. I shimmied out of the dress, waved my apologies to the owner and burst into tears as soon as I hit the sidewalk.

As you're reading this, you're probably thinking what a petty (not pretty) woman I am. After all, the Hickman catheter is a temporary, not a permanent fixture. And with everything else going on, isn't a polka-dot dress a frivolous thing to cry about?

But the tears weren't really about the dress. Just like when I had my hair lopped off, the sobbing was about moving from the theoretical to the concrete world of cancer. That pretty dress mocked me as I twirled.

"Hey, how pretty do you think you're going to look when the catheter is poking out for all the world to see?"

"Those cap sleeves are covering up your hideous upper arms NOW, but at the rate your slack skin disease is spreading, don't you think you need LONG sleeves?"

For the most part, I look healthy. Most of the time, I feel healthy, both mentally and physically. But every once in a while I experience something, like a pretty polka-dot dress, that reminds me in a very concrete way that cancer sucks.

Chemo Day

Just another chemo day today, seventh in a series of eight. In two weeks it will be over, everyone says, except that's not exactly true. The chemo will be over then. Then I'll take pills for 10 years. The chemo itself isn't so bad. I mean it's not great fun to spend six hours at the hospital, even if it's Fancy, but there are worse things. Like four days later when the bone pain and depression/weeping sets in for the next three days. But I hope to stave that off with heavy drugs--Tylenol w/ codeine, generic Ativan, and if necessary, I'll dip into my little stash of generic Valium. I will report on the results here. I still have some numbness in my fingertips and toes, though it gets better (which is less) each day. Nurse L said I can increase my dosage of pink anti-numbness capsules from one a day to two.

My friend G picked me up and took me to chemo. We got there about 20 minutes early and had to wait. The women who take blood from my port are always very nice and cheery and motherly. It doesn't hurt very much--and I think I have a low tolerance for pain. They spray "cold spray" on the site where the port is buried (upper right chest) to numb the skin. If any of you are considering getting cancer and having chemo, I would recommend having a port inserted into your body, even though it feels alien the first week or so and fills you with regrets. But the alien feeling does fall away. And now je ne regrette rien. At least about the port.

G had to leave at 3:30 and passed the baton to L. We watched part of Nicholas Nickleby from the selection of DVDs and video cassettes in the chemo ward. Nurse L brought them to us in what reminded me of a little red wagon. The movie was rather melodramatic, with good as Good and evil as Evil, so when the Taxol was finished being dripped into me, we decided it was not necessary to stay around and see the rest of it.

At one point I asked L to get me a blanket because I was cold, but by the time he found one, I'd had a hot flash and was sweating. As I told Nurse L, the hot flashes are the least of my problems. Feeling the void in the world is the worst, followed closely by bone pain and then weeping mixed with irritability.

I was very tired and so was L. We took the bus home. I sat next to an older woman with dyed brown-red hair who goes to Thailand once a year. On the other side was a Buddhist or Buddhist-file. The older woman's cat escaped yesterday and she was upset about it. At least he had claws so wouldn't be defenseless in the world. He doesn't have a tag, though, or a computer chip in his ear, so he'll have to find his way home himself. She put up Lost flyers but the rain wrecked them. She and the other woman talked about shih tzus and one of them said they were originally ratters in China. Didn't the Chinese have cats? I asked. I don't know, the Thailand traveler said, maybe they ate them.

L and I tried to figure out why people are more apt to talk to one another on buses than on L trains. Because buses are more contained, are more like a passenger car, are quieter? We don't know.

We had a very nice dinner at home: broiled salmon with garlic and paprika, steamed cauliflower mixed with curry paste and lemon juice and sauteed onions and garlic, and a little steamed kale. We didn't take a picture of our meal, as our cancer cousins in Marin do. But we could have. We have very nice plates in two patterns. Salmon has omega-3, which is supposed to help combat chemo brain. It's hard to figure out what's chemo brain and what's middle-age word-retrieval slowdown. G is on a committee to plan an international writing festival. I was suggesting she recommend ----Umberto? Humberto, the Uraguyan who wrote Voices of Time and was a big hit when he spoke at the Museum of Contemporary Art here. About 15 minutes later the name came to me: Eduardo Galeano. I don't know where Umberto came from. I also thought of the Polish-born French writer Agnes ____ . At home I found her trilogy: Le Grand Cahier, La Preuve and Le Troisieme Mensonge. Her name is Agota Kristof . I was close, but no cigar: she was born in Hungary and lives in Switzerland. I discovered her work when I asked a friend who teaches French to recommend of a book that wasn't too difficult. The three novels are simple but stunning in their depth and darkness, and twisty at the end.

Yesterday my friend J from Ohio was in town and we had brunch with her hosted by the rabbi (and his wife, who was the chef) who married us as well as J and her husband M. J graciously decorated my scrubbed and shaved head with curlicues, filigree, tiny peace signs and grape leaves and an easy-to-read U.S. out of Iraq in back. My head was quite the hit in Chemolandia today. J is a professional artist and did a lovely job. Most of it is henna, which is a greenish paste that dries black and eventually peels or falls off to reveal red-brown underneath. I try to keep the dark on as long as possible but it's so tempting to peel and pick. It's like fifth grade when everyone was pouring glue on her/his (mostly her) palms and pulling off the dried "skin." It's as satisfying as stomping on plastic bubble wrap. Not everybody appreciates that pleasant activity. Which is too bad.

Diagnosis: Damn

I was diagnosed with breast cancer last Thursday, July 12, 2007, but other than that, that's all I know. I know that I'm going crazy--but not going crazy. This is limbo--only knowing so much, which is very little, and not being able to do anything but wait and wait and wait and wait.

I'm 31 years old. I've got two kids, and I've got a ton of shit to do. Last thing I need is cancer. It's the last thing anyone needs.

My brother-in-law died of lung cancer on July 7, 2007--five days before my diagnosis. His situation, of course, was way more serious--that is, as far as I know.

I mean, it's not like I'm, "Thank GOD I have breast cancer!" But it's like, "Thank god I don't have some type of other cancer that's worse."

None of this makes any sense.

So yeah, like the URL says, cancer fucking sucks.

"Pole Dancing" Recap

When I first decided to perform "Pole Dancing" in public, I was full of the kind of swaggering bravado sometimes found among the "seriuosly ill."

"Have you ever done anything like this before?" my husband queried.

"Nope, never done it," I answered.

"Are you sure you want to do this?" he further questioned.

"Yep, I'm sure about it," I assured him.

"It's all about taking personal risks," I boasted. "That's the upside of having a serious illness."

But as the day of "IWOSC Reads Its Own" came closer, the air started to seep out of my puffed up self assuredness.

Yesterday, I had a stomach full of out-of-control butterflies. Today, the creatures were practically choking me. "I can't do this," I cried to George and Cynthia. "If you're sick, you don't have to," they assured me. After all, I was on the record with flu-like symptoms last week and could use the oldest excuse in the book ("I have a tummy ache") to get out of my commitment. And if that didn't work, I could always pull out the ol' cancer card.

On the drive to Dutton's, I still wasn't sure if I was able to follow through. I fretted that my performance would bring shame upon myself, my family and the entire IWOSC organization. (That's the Japanese in me coming out.)

In the end, I forced those butterflies to fly in formation and went on "stage" at the courtyard at Dutton's. Among the crowd were 22 of my Cancer Banter buddies. 17 of us crossed the street to the Early World Cafe for an early dinner after the show.

To my delight, the crowd laughed and cried in all the right places. Everyone said that the pole, borrowed from the Convalescent Aid Society of Pasadena (thanks, Carolyn and Bruce) added a lot, but I forgot to pack my red feather boa.

Paula had suggested that I videotape the reading, but I'm sorry to say that I didn't get my act together to make that happen.

I've been asked to read at the upcoming West Hollywood Book Festival on September 30, and, if I'm not at Hotel Hope having a stem cell transplant, I'll once again pull out the pole (and the boa) for another round of public pole dancing.

What a Difference a Doc Makes

I underwent the CT scan and dreaded bone marrow biopsy (BMB) Friday afternoon. I'd read and heard repeatedly that the skill level of the doctor can make a world of difference in the pain level of the patient during a BMB. I'm here to second that emotion. I only uttered one tiny "ouch" as the bone marrow seeped into the needle. The rest of the speedy procedure was painless.

I should have the results of the BMB next week, along with the pathology reports from the skin biopsies that Dr. Chang will take on Monday. Both of these results could call for a significant change in direction in my treatment plan. If the BMB shows myelodysplasia (abnormality of the bone marrow caused by chemo treatment), I'll need an allo (donor) stem cell instead of an auto (my own stem cells) transplant. It's still uncertain what a confirmation of granulomatous slack skin disease will mean, but Dr. Forman is eager to work with Dr. Chang, and he's already brought on board the CoH specialist on T-Cell Lymphomas. What a team!