Cantillon Vigneronne

Beat that.

dave

isn't this lovely?

I'm still feeling crappy, so I thought I would share something that really makes me smile.

I met Claudia at the 2009 Conference for Young Women Affected By Breast Cancer. Every time I saw her, she was wearing a very different and very funky hat.

This one, made from coffee filters was one of my favourites:




When Claudia was diagnosed with breast cancer, she launched the She Arts Project: "a collaboration with 30+ Artists with photographs from Meg Luther Lindholm."

The photographs eventually became part of an travelling exhibit. You can see more of them here.

I love this kind of thing.

The Swine Flu

The Swine / Piggy (H1N1) Flu still lingers in the DFW.... Crowley School System has not reacted to this Flu yet..... I am real nervous about this Flu.

Recovering from the TCU stairs while getting ready for the media / transplant recipient softball game.

Today is the last, final.... soccer game of the Spring 2009 season.

Back from Stanford and San Francisco

I met with EOS specialist Dr. Jason Gotlib at Stanford Cancer Center on Monday. He still wants to completely rule out any "secondary" causes of elevated EOS before arriving at a diagnosis of HES (hyper eosinophilic syndrome).

Once I've tapered off the steroids in a few weeks, I'll arrange for allergy testing. This is just a matter of doing due diligence because I don't seem to have any allergy symptoms. And Dr. Gotlib is the first to acknowledge that allergies rarely cause EOS to soar into the sky-high "severe" range that mine reached last summer.

So. . . no quickie diagnosis and no quickie cure. If it's determined I have HES, Dr. Gotlib would like to include me in a clinical trial of a monoclonal antibody called mepolimuzab. The drug does a great job of controlling EOS without all the harmful, long-term side effects of steroids.

And if "monoclonal antibody" rings a bell, it could be because I've written about another miracle drug in the same category. Rituxan (aka Susan's relapse prevention), the quarterly maintenance drug I take through an IV, is in the same drug class.

The Battle Zones

As if it's not enough to be fighting stage four breast cancer, Altadena resident Megan Jones is up against a David versus Goliath battle against her insurance carrier, California Blue Shield.

At age 36, and without a family history of cancer, Megan was diagnosed with an aggressive form of breast cancer that had already spread to her liver, brain, and bone. Everyone was shocked.

Treatments began immediately, and chemotherapy and targeted therapy have started to shrink her tumors. Everywhere, that is, except for in her brain. When her doctor prescribed additional, cutting-edge treatments that could eliminate the brain tumors and prevent new growth, her insurance company, California Blue Shield, denied coverage.

She appealed, but the insurance company is still in denial. Megan has elected to receive the treatment, with or without the insurance payments, and her family and friends are trying to raise $100,000 in 100 days to cover the costs.


I received the following email from City of Hope research scientist Dr. Susan Kane:

You might know Megan Jones from political or city circles. What you might not know is that she has been diagnosed with an aggressive form of breast cancer and is currently undergoing costly therapy. Please go to http://megansfund.chipin.com/megans-fund and consider making a donation. As a breast cancer researcher, I know that Tykerb is a cutting-edge therapy that holds great promise for the treatment of breast cancer. Megan is a young, energetic and caring individual. Let’s help her fight the fight of her life.

Cancer isn't fair. Insurance companies aren't fair. I hope you'll consider leveling the playing field a little by either making a donation or spreading the word about Megan.

ideas for my chemo cake tomorrow

because you've all been joking about getting me a cake, right?

"happy chemo... don't ruin it for the rest of us"

"don't puke here pls"

"look it's butter frosting."

And now I've just thought of this random one, if you were getting a cake for a total cunt you could get it in chocolate and write "chocolate kills bitches, sorry."

haha! ok back to mesna and vomiting my brains out.

Post Birthday Workout

Well I am older than I ever thought I would be now, so to stave off that mid-life crisis I will go and workout at TCU and conquer the stadium stairs and do some angled push-ups in between stair sets. It's hard fighting father time, and also trying to get back in shape post surgery and cancer AGAIN.

Questions

Everyone talks about how dangerous it is to drive while talking on a cell phone, but I think the most dangerous way to drive, by far, is with a three- to four-year-old in your back seat. In the time it takes simply to back out of a parking spot at Hy-Vee, I'm bombarded with the following questions:

Why do people die and turn into angels?
What sound does a giraffe make?
Does the Wicked Witch of the West wear shoes?
Why don't trees like to eat cake?

Really, who can concentrate on driving with all of the thinking that is required? Why don't trees like to eat cake? And no matter how I answer each question, there are numerous follow-ups.

One more question like this in heavy traffic, and I'll be standin' at The Pearlies.

A birth year older

Happy to see another year pass.

what they said.

I am wiped.

I had a CT scan at 7:15 this morning (and we got back late from family adventures in Toronto), so of course I didn't sleep last night, worrying about over-sleeping (as it turned out I had made a mistake setting the alarm but I woke up anyway) and of course about some horrible mass that could be growing on my innards (I have no reason to anticipate bad news but this never stops me from being anxious).

S. and D. were BOTH home today with different viruses picked up over the week end. One is hacking and coughing and sneezing and one has a stomach bug. My immune system feels very threatened.

I am so tired that I'm hysterical and letting my inner hypochondriac run wild (I am half-convinced I have swine flu).

So, instead of words of wisdom, I give you some other wise women's words:



I first saw this video at the conference I went to recently, for women with advanced breast cancer, when Living Beyond Breast Cancer unveiled it there. With several women in the video present for the viewing (and several others represented were women I met in Dallas).

It was very, very moving.

I was talking to my friend Nicole today and she told me she'd seen the video online. I cried again today when I watched it. It also makes me realize that nothing I have to say on living with metastatic breast cancer is remotely original.

Watch it. These women are more inspiring then Susan Boyle.

Seriously.

Tomorrow is a chemo day. Hope to be writing again by Wednesday.

fundraising 101

I am trying to raise funds in order to get my arse back to SF by the end of the summer.

For the next few weeks I will be selling TONS of women's vintage and designer clothes on Ebay. Please help me out! Most of the clothing is a size 4/6 and shoes are 8/9/10.

And, of course, my vintage is EFFING AWESOME, because it's from my own closet. Some of the 50's/60's dresses are hand sewn with impeccable details.

Prada, Sigerson Morrison, gladiator sandals, german dirndles, bombshell glamour, mod blazers, ETC ETC ETC.

Also... don't make fun of my pictures, hah. It's embarrassing enough as it is.

SHOP!!!

Standin' at The Pearlies

I'm pretty lucky to have such positive, encouraging doctors. I've mentioned before that I signed up as a "Patient-to-Patient" volunteer with the International Myeloma Foundation. The foundation gives my name and number to newly diagnosed patients, and they can call me to talk about the diagnosis. I've only talked to two people so far, but I really enjoy doing it. I think I help the callers feel a little bit better by the end of the conversation. Last week, I got a call from a woman in Boston. She was the friend of someone who has just been diagnosed with myeloma. She told me her friend didn't want to do any research or seek out any support herself, because she was simply too distraught and overwhelmed. Among other things, her doctor had told her she had just three years to live.

Why do doctors do that? Why?

The next day, I ended up having a long talk with Dr. GPO, who started talking about how nobody ever knows how long they have to live. "Hey," he said, "somebody makes a bad left turn after work today, and I'm standin' at The Pearlies."

Standin' at The Pearlies. Dr. GPO cracks me up.

In other myeloma news, I made my call to the Speak-n-Spell lady at the Celgene corporation today. In case you've just started reading the blog, I have to call the drug company every four weeks and take a computerized survey to let them know that I'm not pregnant, thinking about becoming pregnant, or even making direct eye contact with pregnant women. The "person" asking these questions is actually a computerized voice, like the one that came out of those Speak-n-Spell toys in the '80s.

Anyway, there is a good chance that that was my last call to the Celgene Corporation. I think I'm going to miss my monthly chats with Speak-n-Spell Lady. After all, we've talked at least 25 times. My favorite question is, "Have you had your womb or uterus surgically removed? Press 'one' for 'yes', 'two' for 'no', or 'three' for 'don't know.'"

Seriously? If you are pressing three on this question, you have bigger problems than myeloma.

Updates sent to Twitter, April 19-25

Updates about CSC sent to Twitter during April 19-25:

Geron Presentations on Imetelstat (GRN163L) at the AACR 2009 Annual Meeting [April 23]: http://bit.ly/Ruzqj

Micromet Presents Data at AACR Meeting Showing Elimination of Colorectal Cancer Stem Cells by BiTE Antibody MT110 [April 22]: http://is.gd/tYlI

Physiologic Oxygen Concentration Enhances the Stem-Like Properties of CD133+ Human Glioblastoma Cells In vitro [April 21]: http://bit.ly/QBoo2

How powerful is CD133 as a cancer stem cell marker in brain tumors? [April 21]: http://www.ncbi.nlm.nih.gov/pubmed/19369008

A combination therapy to reduce CSC and stop pancreatic cancer growth? AACR abstract [April 20]: http://www.newswise.com/articles/view/551130/

Possibility raised for new applications of type I interferons to target CSC. [April 19] See: http://dx.doi.org/10.1038/nature07815

Hedgehog signalling is essential for maintenance of cancer stem cells in myeloid leukaemia [April 19][Archived tweet]: http://www.ncbi.nlm.nih.gov/pubmed/19169242
[See also: Hedgehog signalling is essential for maintenance of cancer stem cells in myeloid leukemia, Sally Church, Pharma Strategy Blog, March 24, 2009].

gimpy wimpy

I can't sleep and I'm all fuzzy from opiates.



I've been obsessing over the prospect of surgery lately.



I'm not so worried about the gnarly scar... wouldn't that be fun? I could say I got shanked in prison or jumped into the polar bear cage at the zoo. And walking with a cane... I could make that cool. Maybe. I'll have to get one with an animal head for the handle. No, no, it occured to me that I probably wouldn't be able to walk in heels for quite some time. THAT is what bums me out. My fucking shoe collection.



Let me explain before you conclude that I'm the world's pettiest cancer patient. With sexuality comes power, a certain vital sense of control, that is utterly wiped out by cancer treatment. I can't hide behind my femininity like I used to. I can't brush my hair over my eyes. My curves are gone. I can't even fuck right now (chemo apparently restores virginity, fyi, something my doctors failed to tell me about). My only consolation, really, is "faking it" with wigs and dresses and heels, praying it all comes back to me once my body heals. Like riding a bicycle, right?



So don't take away my stilettos, cancer, because I really don't think I can handle the cruel cruel world of comfort footwear.



On a totally unrelated note, Grass Valley is surprisingly beautiful. Places like these make it all worthwhile, don't you think?

Breakfast in Beverly Hills

What happens when a frugality fiend decides to splurge on breakfast in Beverly Hills? Find out at Open Mouth, Insert Fork.

Hapa Happenings

It's been a Hapa-intensive week for me.

I joined "Team Krissy" at a bone marrow drive at Cal State Long Beach on Wednesday afternoon. It was exciting to see how the volunteer team works tirelessly to sign up minorities and mixes (and even European whites) for A3M and the National Bone Marrow Registry. We're hoping that one of our new recruits will be the match for Krissy Kobata, a 26-year-old Hapa who needs a bone marrow transplant.

This is the way we swab our cheeks. One Long Beach student works four swabs at the same time. The girls take a more traditional, one-swab-at-a-time approach.

I drove from Long Beach to the Landmark Theatres in West LA to see the screening of Half Kenneth, a beautiful film about two Hapa brothers who become orphans while they're interned at Manzanar during World War II.

Tonight, I'm going to the Mixed and Matched Concert and Bone Marrow Drive at USC and will, once again, join Team Krissy and A3M in recruiting potential donors for the Registry. Hapa Athena Misa's PSA about the need for multi-racial donors will be shown at tonight's event. You can view it here. (Krissy and I are interviewed in the clip. Just don't make fun of my bad-hair day.)

Finally, my new friend Bill and I are co-captains for the Pasadena Relay for Life for the American Cancer Society on May 30-31. Our theme is "Mutts for Marrow," and, once again, our goal is to draw attention to the need to sign up minorities and mixes for the Registry. You don't have to be a mutt or a minority to join us for an hour or for 24 hours during the Relay. And, if you sign up, I may even let you borrow my dog bone tiara.

not done yet: where to buy

Are you getting tired of the relentless self-promotion? Well, like the book, I am Not Done Yet.

I do, however, promise a return to regular programming (at least temporarily) very soon.

Folks have been asking where they can buy my book so I thought I should pull that info together in to one post:

• You can buy the book directly from the publisher (the glitch on the order form has been fixed and it should work easily now). You can link to Women's Press any time, by clicking the photo of the book on the right.

• You can order from Octopus books (or drop in and buy it if you live in Ottawa). And, if you live in Canada, ask your local book store to order the book (this may even work in the US). Please support your local independent book store.

• You can also place an order through Chapters (although the statement that the books usually ships in 3-5 weeks is a bit disconcerting

• The book can be ordered from Amazon.com but not, for some reason, through Amazon.ca.

• Finally, you can order the book directly from me (I have run out but have ordered more). This is the way to get a signed copy. I charge the price of the book and whatever it costs me to mail it (plus GST, in Canada). If you want to go this route, you can email me at "laurie DOT kingston AT gmail DOT com.

Please do let me know if you encounter any bumps when you try to buy the book, so that I can make things right.

Doctor Visit

Went and hung out all FREAKING day at the heart / lung clinic but I had a packed lunch, a snack, another snack, my IPOD, puzzle book(s), laptop and Internet access.... I only got bored the last 2 hours while sitting in the waiting room (so I took a nap, that right I was sprawled out on the chairs Al Bundy style snoring and scratching).



The visit was uneventful. My meds are still the same, the decreased prednisone 5mg in the morn. and Double Strength Bactrum on Monday and Thursday now. I finished my annual Lung Transplant evaluation my PFT's are up from my March Spa visit (which is good) I didn't do the 6 minute walk as that was done in March right after I got out of the Spa and it was still more than double what I had done the previous year (I think the headband, the full body suit and the healies helped).

Allagash Confluence Now Available

From the press release:

"Allagash Confluence, the second release in our "series d'origine," is created with a nuxed fermentation; utilizing our house primary Belgian style yeast in combination with our proprietary brettanomyces strain. The two yeast strains work in tandem creating a marriage between spice and fruit flavors that ultimately leave a lingering silky mouth feel.
Confluence is brewed with a blend of both imported pilsner and domestic pale malts as well as a portion of caramel malt, resulting in a complex malty profile. Tettnang and East Kent Golding hops are added in the brew process to balance the intricate malty profile while adding a sweet and spicy citrus aroma.
After fermentation, Confluence undergoes a lengthy aging process in stainless steel tanks to enhance the flavors. Prior to bottling, it is dry hopped with Glacier hops, providing a pleasant balance of aromas. Confluence is then bottle conditioned and aged in our cellar prior to release.

Alcohol: 7.5%
Original Gravity: 1064
Cellaring Temp: 50F
Serving Temp: 40-50F

Come and get it!

dave

The trick is to minimize wind resistance.

Sarcoma Fun Run, 3/22/09



It really was fun, I'm not gonna lie. You wouldn't think "sarcoma" and "fun" deserved to be in the same title together, but alas, there it was. We arrived about an hour late and sauntered around Golden Gate Park for the afternoon. The Fun Run didn't cure my cancer, though, and certainly didn't heighten my awareness of sarcoma. I'm already pretty aware. All I got was a pot cookie and a sunburn. it's cool though.

They ran out of free t-shirts by the time we arrived, and there was this wee little man that was furious he wouldn't get his shirt. How else would anybody know he was there? WHY DO IT WITHOUT A FREE T SHIRT?? I know little man, I was thinking the same thing. We ran into him again later and he complained that he'd gotten lost and taken a cab to the finish line. Such a grumpy little thing. I wonder if his nipples were chafing? I bet that's it. I'd be grumpy too.



Thank you Vicki and Rach, you are both amazing.

"not done yet" reviewed at "mothers with cancer"

Mary Beth Volpini kindly agreed to review my book for our group blog, Mothers With Cancer:

There were entries that I laughed while reading… Monday, July 3, 2006 as her boys pretended to be Wolverine. The most touching entry to me… Wednesday, October 10, 2007 Etching Myself in their Memories … spontaneous tears ran down my cheeks right there in the hair salon. I share those same haunting thoughts.

I am glad that I had the chance to learn more about Laurie. I applaud her courage, her creativity and her approach to life. “Metastatic cancer has not ended my life; it has just caused me to live my life differently.” If my story becomes more similar to Laurie’s, I hope I proceed with the same courage and positive outlook.

You can read the rest of the review here.

Mary Beth is an artist and you can see some of her work, at her personal blog.

NY Times Article

I recently was fortunate enough to lend my voice and story to an electronic article that was produced by the New York Times staff Karen Barrow and others. I hope this article will increase awareness and de-stigmatize this health care crisis (Lung Cancer).

http://well.blogs.nytimes.com/2009/04/22/voices-of-lung-cancer/


http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html

CANTILLON AND FANTOME? ON THE SAME DAY? YES, PLEASE.

JUST IN!!!

1. CANTILLON FOU FOUNE (not many bottles of this one so grab it fast. If you're curious about it, you can also try it on tap at Toronado. One of my all time favorites).

2. CANTILLON LOU PEPE KRIEK 2006

3. Fantome Printemps-The Ultimate Spring Beer!!!

Have a drink. It's hot out.

cheers,

dave

d: a photographic retrospective

Earth Day is also D. Day. And a good day to look back over the last six years:

2003

2004

2005

2006

2007

2008

2009

Happy birthday to a wonderful boy.

We are getting to be like old people.

Diseases and annoyances that I have discussed with friends today:
hot flashes
Hepatitis C
bipolar disorder
breast cancer
reaction to HPV vaccine: recurring rashes
chlymidia
strep throat
MS
polycythemia vera
fibrocystic breast disease
HIV-AIDS

Not as many as I thought.

It could be worse. It could always be worse. Everything, everything could be worse. Tonight K and I were walking down Broadway (New York) and right around Lincoln Center we saw (and heard) a line of 15 or so cop cars speeding down the street. It turned out to be a routine terrorist drill. I was walking by a fire station yesterday and saw a plaque with pictures of fire fighters who had died in 9/11. B read about a young girl who died from the HPV vaccine, and her mother's remorse at having urged the daughter to get it. How could she forgive herself? But it wasn't her fault. J said she loved Joan of Arc when she was young. B said she was fascinated by the story of Tamar in the Bible. She is also fascinated by temple prostitutes. J worked for Eliot Spitzer and said he was arrogant, just like people said. I went to St. John the Divine and it felt taller than European cathedrals. Arches (and probably naves; I always forget what they are) and bright bright stained glass. It's the first time I remembered seeing the American Poets' Corner. Molly Peacock is the poet in residence.
B met me across the street from the cathedral at the Hungarian Pastry Shop, where I first went about 15 years ago with A, whom I had contacted because we were researching the same person. She had had breast cancer and was a breast cancer activist and I wasn't sure what that meant. I didn't ask her because it sounded boring. She had been to the statehouse. L was downstate today, and stopped in Bloomington to interview the workers at the David Davis Mansion. Why would someone give a kid a first name so much like his last name? At a party years ago we met a guy who said his father changed the family name when the son was a teen, so that his name became Henry Henry. He did not forgive his father for that. And why are there so many men named "Dusty" Rhodes? Does each think he's the only one?

More quick thinking

The other day, WCK announced that she was going to name all of her stuffed animals either "Poop" or "Pee". I thought this was pretty funny, but I had to pretend to be a mature mother, and I told her that it was extremely bad manners to call anyone "Poop" or "Pee". We needed to have this talk several times.

Today she was playing with a little plastic frog that she picked up at the Pet Expo. I asked her what his name was.

"It's Poo .... h Bear."

Nice save.

Questioning the CSC hypothesis

Cancer's culprit: Breast cancer's genetic profile calls the cancer stem cell hypothesis into question by Elie Dolgin, The Scientist 2009(Apr); 23(4): 59. Publicly accessible (free registration required). Excerpts:

In 2007, the CSC hypothesis was thrown for a loop, however, after a team led by Kornelia Polyak, of the Harvard Medical School and Dana-Farber Cancer Institute in Boston, probed a bit deeper into the Michigan team's findings. In this month's Hot Paper, [reference 2] Polyak's team compared the genetic profiles of the putative breast CSCs with other more differentiated cells, and found several genetic differences between the two cell populations. This "raises doubts about whether they are direct descendents of one another," says Polyak.

.....

Notably, Baylor oncologist Jenny Chang, together with her colleague Jeffrey Rosen, compared breast tumors in patients before and after chemotherapy, and found a three-fold enrichment in cells resembling CSCs following treatment, signifying that tumorigenic cells are, indeed, more resilient. [reference 5] "There are different subpopulations of [cancer] cells that we need to target separately," says Chang. These results lend credibility to the CSC hypothesis where it really counts, adds Wicha. "It's a valid model because it actually predicts behavior in the clinic," he says.

Reference 2: M. Shipitsin et al., "Molecular definition of breast tumor heterogeneity," Cancer Cell, 11:259-73, 2007. [PubMed Citation].

Reference 5: X. Li et al., "Intrinsic resistance of tumorigenic breast cancer cells to chemotherapy," J Natl Cancer Inst, 100:672-9, 2008. [PubMed Citation].

"not done yet" reviewed

photo: L. Steer

"As a survivor, I appreciated her candor on everything from alternative practitioners who blamed her cancer on her negative body image to the way she describes a summer evening walk with a friend that ends with strawberries and whipped cream. The medical and the mundane knit together a complete picture of what it is to live with cancer that might be controlled but never cured."

- Lorri Steer, from her review of Not Done Yet on her blog, Terrible And Beautiful.

Shedding Some Light on EOS

Since eosinophilic blood disorders are extremely rare, only a handful of doctors in the country specialize in them. One of them, Dr. Gotlib, is a hematologist with the Stanford Cancer Center. Since I've been itching to take a trip to SF anyway, I decided to combine the getaway with a visit with Dr. Gotlib on April 27.

He'll review a year's worth of my blood charts and my doctor's notes before our appointment next Monday. I'm eager to find out his conclusions and recommendations for a course of action.

I want to get away from the watch, wait, react mode.

In the mantime, I'm still enjoying the extra boost of Prednisone-fueled energy, I'm eating like a horse and I'm not gaining or losing weight. All good things.

Tired Tuesday

Saturday: Ravyn did not do so well this past Saturday on the soccer field, I am going to call her the Rock because if the coach puts her in position she is not going to move, at least she isn't chasing butterfly's.

On Saturday eve I tired running at the TCU track, it was an ugly sight I did win EVERY race though. (R³ kept challenging me to race after race until they got hungry. I tried to run a Jingle Jangle (sprints that we used to run during football across the field over-n-back over-n-back for time) I got in one ugly jingle. We finished up at the Purple Cow to celebrate the fact that I made it off the track on my own and not in an ambulance.

AACR Annual Meeting Day #3

I'm sorry I have not been able to keep up with this blog daily throughout the conference. We advocates are truly busy here....I attended I think 8 scientific presentations yesterday, then we had an event in the evening, so my day from about 7AM to 10PM was accounted for. I needed to get up early again this morning for another long day (and will again tomorrow morning) so haven't had time to blog much. But I will be back with updates about what we've learned here as soon as I can.

It's interesting, most of the advocates I meet here are strangers from all over the country, but our cancer and advocacy experiences bond us. We communicate easily with each other and feel an almost instant friendship. I ate dinner last night with three advocates from other parts of the country who were strangers to me the day before. We had a great time and had no trouble finding things to talk about.

We were talking again today. Cancer changed our lives. And our lives never returned to our previous before-cancer normal once we finished cancer treatment and became "survivors". We are all long term survivors doing purposeful and good things with our cancer experience, but we agreed that if we could go back to our old before-cancer lives and perspectives, when we weren't survivors and advocates, we would.

In a minute.

If we could, we'd in a minute go back to the lives we had before that had not yet been corrupted by cancer, by cancer testing, by uncertainty and by loss.

We all still miss the old before-cancer days, when we didn't feel so vulnerable, when we didn't live in a world that witnessed so much hurt and struggle, when we didn't so often lose other survivors we'd developed friendships with, when we didn't have to constantly be tested to find out if we could continue to expect to survive. Life even after cancer, as a survivor, is tough.

But the whole point of this conference is cancer research, learning how we can one day help make cancer disappear from the face of the earth. Hoping for a day when no one has to contemplate their lives before and after cancer.

Our grand hope; cancer cured and a thing of the past. A time when there are no more cancer survivors because there are no more cancer victims.

i have never been.
so heartbroken.
in all of my life.

as i am at this moment.

i was incredibly foolish to be happy for the end, so stupid stupid stupid for waking up today with a smile on my face.

i broke down and started hysterically sobbing in the waiting room, everyone either staring at me or pretending not to notice, begging the doctor, "please, PLEASE give me chemo this week, it's my last, pleeeaseeee."

no such luck.

the last week

the sun'll come out

tomorrow

bet your bottom dollar

that tomorrow

there'll be chemooooo

The cool part of Birmingham or: Kafka in 'bama

If you ever find yourself in Birmingham, Alabama, and you want to be reminded of, say, East Berlin not long after the fall of the Wall, when lots of artists cooperatives and little restaurants sprang up in alleyways and empty buildings, then take yourself to Greencup Books, 105 Richard Arrington Jr. Blvd. South. This space (and this space only) has the feel of E. Berlin. I had a little reading there on Friday. Next door is Bare Hands Gallery, which had on display some shiny silver deer heads and a political piece made of an old water fountain. (You look down in the hole where the pipe went and you see Obama cards and in the middle, a black and white photo of a bigot in front of the statehouse, probably in the 1960s.)

Greencup has a portrait of Kafka painted on the wall, flanked by (painted) cockroaches, and a couple of shelves of lit mags and zines from all over. It's a nonprofit, which hosts classes and performances, and designs and prints books. Outside on the sidewalk was a bin of romance novels. Inside were shelves and shelves of used books. Plus some couches, typewriters, and people sitting with their laptops. My reading started late, upstairs, where there were large skeleton costumes hanging up, in storage from the annual Dia de los Muertes festival. Not that many people are here, the head guy told me, after checking upstairs, where the reading would take place, and then I went up there and saw one person waiting. In the end, there were seven in the audience, plus a dog, who didn't seem to be much interested in cancer or Cancer Bitch. I'd met three of the audience members at the gallery. One of them had a mastectomy about 20 years ago when she was penniless and insurance-less, and had reconstruction more recently. She said she was sick of pink ribbons and we talked about pink-washing, whereby corporations and sports teams support breast cancer benefits in order to clean up their public profiles. We sat in a sort of oblong and I read and we talked. It was very intimate. I'd read the night before at the University of Alabama in Tuscaloosa, in a gallery, with an audience of students and faculty, as far as I could tell. All my books were for sale but I don't know how many were sold. Friday night I brought books to sell and sold two. Which is a good percentage.

I have a reading in Princeton tomorrow at noon and am now in the basement of my friends' house in that fair city. I met G in France ten or more years ago at a National Endowment for the Humanities seminar on the legacy of fascism in France, Germany and Italy. Her husband is here on a Hodder fellowship. I don't know yet where the cool places in Princeton are--beyond here, in this house.

Tacheles, Berlin


Greencup, Birmingham

Baby, I'll be your boyfriend

It's finally happened: I am over a week late with my monthly NKOTB video. This was pointed out to me by the other die-hard NKOTB fans who read this blog. (Actually, there is just one other NKOTB fan who reads this blog, but she did point it out to me, which means that 100 percent of NKOTB fans who read this blog are in an uproar!) How could I have let this happen? I must do a penance and listen to Hangin' Tough 10 times in a row.

This is a video for "Single", which has a special place in my heart, because it's the song they used to open their concert. Before the concert, I read a review of a show they did in another city. There was a line in the review that said something like, "They started singing 'Single', and then the crowd collectively lost their (bad word)."

And, seriously, I'm telling you as someone who used to work as a professional writer: That is the only way to accurately describe what happened. Now I can't hear this song without hearing a crowd collectively losing their (bad word). It's a fun sound.

P.S. See if you can find Danny and Jon in this video! It's like Where's Waldo.

Updates sent to Twitter, April 12-18

Updates about CSC sent to Twitter during April 12-18:

Emerging involvement of Hsp90 inhibition in cancer stem cells? [April 18]: See: http://www.ncbi.nlm.nih.gov/pubmed/19179103

Transitions between epithelial and mesenchymal states: acquisition of malignant and stem cell traits [April 16]: http://tinyurl.com/cetza2
[Full text is publicly accessible (free registration is required)].

Evidence that cigarette smoke activates a signaling network implicated in maintenance of CSC [April 16]: http://www.ncbi.nlm.nih.gov/pubmed/19351856

Loss of p53 induces tumorigenesis in p21-deficient mesenchymal stem cells (OA) [April 15]: http://www.ncbi.nlm.nih.gov/pubmed/19308294
[Full text is publicly accessible].

Simultaneous detection of mRNA and protein stem cell markers in live cells (OA) [April 15]: http://www.ncbi.nlm.nih.gov/pubmed/19341452
[Full text is publicly accessible (via Libre OA)].

Inferring clonal expansion and cancer stem cell dynamics from DNA methylation patterns in colorectal cancers (OA) [April 15]: http://tinyurl.com/cezflq
[Full text is publicly accessible].

Autophagy inhibitors may enhance the therapeutic effects of TK inhibitors in the treatment of CML (gratis OA) [April 15]: http://tinyurl.com/cbmb7m
[Full text is publicly accessible (via Gratis OA)].

Tumor initiating cancer stem cells from human breast cancer cell lines [April 15]: http://www.ncbi.nlm.nih.gov/pubmed/19360358

Cellular immortality and cancer: From telomerase to cancer stem cells [April 15]: http://dx.doi.org/10.1016/j.bbadis.2009.03.006

Copy number analysis indicates monoclonal origin of lethal metastatic prostate cancer [April 15]. See: http://www.webcitation.org/5gBP6TVOb
[PubMed Abstract]

Lessons Learned from the Study of JunB: New Insights for Normal and Leukemia Stem Cell Biology [April 12]: http://tinyurl.com/den2nq
[Full text is currently publicly accessible].

Glioma Stem Cells: Not All Created Equal [April 12]: http://tinyurl.com/dmcd36
[Full text is currently publicly accessible].

Are Cancer Stem Cells Real? After Four Decades, Debate Still Simmers (JNCI Apr 7, 2009) [April 12]: http://tinyurl.com/cofp6j

AACR Annual Meeting Day #1

I spent today with the other advocates involved in the AACR's Scientist-Survivor Program. The survivors and advocates, about 30 of us altogether, are from all over the US and the world. There are Scientist-Survivor Advocates in the program from Jordan, Zimbabwe, Poland, Sweden and Canada along with advocates from all over the USA. All of the advocates have had their lives affected by cancer and have gone on to do great things on so many levels. I feel I have done very little in comparison; the other advocates have done so many things that have made such a difference and have contributed so much to those affected by cancer. They so inspire me. I hope to grow to their levels of advocacy.

The Scientist-Survivor Program was the brainchild of scientist Anna Barker, the deputy director of the National Cancer Institute. The program seeks to help those of us who advocate for others learn what is new in the world of cancer research so that we can share what we learn with those in our respective communities. What we learn from the scientists and what they learn from us will help us to form mutually supportive relationships that will in the end benefit us all.

There were several scientists I met last year who came to spend time with us today and who gave us hugs, sat at our tables and joked with us. Prior to my involvement in this program, they wouldn't have been real people to me, just first initials and last names on research journal articles I might have read as a medical professional and patient. Now I know better, they are real people who care about those of us with cancer and who want to help us defeat our disease. Now they are my heros.

Maybe some of our success stories will inspire the scientists to keep doing the good work they are doing. The comment was made that cancer research is difficult work, that the work involves 98% failure and 2% success. Cancer is a tough and complex disease. I wonder how many of us would stay with a job where we only felt we succeeded at what we were doing 2% of the time. And what if most of our work and even our successes were not recognized by the world at large? What if we had to beg for the funding that would allow us to continue to do our job? I'm sure we would become discouraged. At least as a nurse, even if my patients die, families thank me for my caring. I get personal positive feedback for my work, at least sometimes.
More than 2% of the time.

But those of us who are long-term survivors have survived as a result of the scientists work. The only chance the world has of ever seeing an end to cancer is the scientists continued dedication to the field. I am an almost 8 year survivor of an "untreatable" cancer, another advocate I spent time with today is a 5 1/2 year survivor of pancreatic cancer. We have survived as a result of the research that led to the treatments we received.

I believe, as the SSP Program does, that scientists and advocates can learn from each other and form mutually supportive relationships that will result in newer and better treatments, and in the end a cure for cancer.

Anna Barker did a wonderful presentation for our group today, I truly admire her. She lost most of her family to cancer and as a scientist has dedicated her life to ending cancer in her work with the National Cancer Institute. She gave us some mind-numbing statistics. Cancer results in $213 billion dollars a year in US health care costs. Currently 560,000 people in the US die of cancer ever year. As cancer rates increase as the baby boomers age, cancer will result in 10.3 million deaths every year. As a country our cancer death rate is expected to double by the year 2020.

The really sobering statistic, though, is that the overall number of deaths from cancer has not decreased since 1950. Our five year survival rates have increased, so people are living longer after a cancer diagnosis, but the cancer death rate per 100,000 population is the same now as it was in 1950. We've reduced the overall death rate from cardiac and other causes, but not cancer. I've always been afraid that when people hear the numbers indicating increased 5 year cancer survival they will feel we are winning the battle. The battle is a long way from being won.

I think people came to associate "5 year survival" with "cure"; that is not the case. Many are living prolonged lives with cancer, but in the end are not surviving their cancer. We still have a lot of work to do. We still need to devote a lot of resources to cancer research. The good news is that there are many new ground-breaking research findings, and new out-of-the box areas of cancer research, which combined with new technology and communication abilities have the potential to truly change the cancer statistics in upcoming years. Nanotechnology, cancer genomics, angiogenesis studies, and proteomics are just some of the new areas of cancer research.

Anna Barker had a slide of her favorite quote:

"The world created today, as a result of our thinking thus far, has problems that cannot be solved by thinking the way we thought when we created them." Albert Einstein

We are thinking differently now, and I think we will see great progress and success in the fight against cancer soon. I will spend all day tomorrow listening to scientific presentations discussing new discoveries and hope to share some of them with you tomorrow.

The high point of my week

This afternoon, we drove all the way to the American Royal center. We stood in line outside the building for about 20 minutes, waiting to get tickets. We forked over $17 and fought our way though crowds, stopping only to pet a hedgehog, a ferret, and a chihuahua wearing a pink tutu. We endured the first 45 minutes of the cat show, which was so crowded we had to stand in the back. Jay and I took turns hoisting our 36-pound child over the crowd so she could see. The big highlight of the cat performance was a bell-ringing competition between a cat and a trained chicken named Indiana Jones. (Winner: The chicken)

Then it was time: The moment I'd been waiting for all week long. And this .... was it. This was it, people.

The best part of this video is when the cat who is supposed to be supervising the tip jar falls off of his/her stool.

6th Annual Marie S. Franck " Footsteps toward Hope Ovarian Cancer Walk"

You can make a difference in the fight against ovarian cancer. Walk in memory or walk for a survivor at the 6th annual Marie S. Franck Foosteps Toward Hope Ovarian Cancer Walk on May 2, 2009 at 8:30am at the Jones Beach Boardwalk, parking field #5.

All proceeds will benefit the Rosewell Park Cancer Institute in Buffalo. Help them break the $100,000 mark with this year's donations!

To sign up, call Sister Suzanne at St. Joseph's College in Patchogue at (631) 447-6581.

AACR Annual Meeting

.I am in Denver now ready for the beginning of the AACR's Centennial Annual Meeting tomorrow. There will be 17,000 people participating in the conference from 60 different countries with over 500 significant new discoveries in cancer research being presentedI am tonight trying to decide which of those 500 presentations I most want to attend, I wish I could attend them all. I again have multiple presentations, at least 2 or 3, I'd like to attend for most of my available time slots over the 5 days. I will again have to pick and choose as I am unfortunately unable to be in several places at once. It is such an overwhelming opportunity for me to learn so much. I am very grateful to be here.

I flew into Denver just before the snow storm started...it was pouring rain when I got here and about half an hour later the rain changed to sleet and then heavy snow. I was able to get a few pictures, one of the snow covered Big Blue Bear sculpture that peeks into the Conference Center windows. It is 40 feet tall and weighs 10,000 lbs. You can see the snow storm as it was in progress. I'm very fortunate my flight came in when it did...an hour later and I'm sure I'd have experienced flight delays. I will try to update my blog over the next several days while I am here in Colorado.

hooray!

love your suffering

You know quite well, deep within you, that there is only a single magic, a single power, a single salvation... and that is called loving. Well, then, love your suffering. Do not resist it, do not flee from it. It is your aversion that hurts, nothing else.

Thrush before the last chemo and a general malaise. Sometimes my mind forgets that I'm sick, seriously so, and calls my body to action, to the normal life, the life of errands and jobs and making other people happy. My body usually concedes until it has reached its limit, raising the white flag of fever, of aching bones. My body, my body. I must learn to listen to my body before all else.

I think of my last chemo and begin to cry, the weight of the experience is overwhelming. On one hand, I understand that millions have gone through treatment before me, I am not special, this is no big deal. This is life.

On the other, I think about the special hell that I have been banished to within my body for the past six months. The feeling of cellular betrayal, your insides crimping and dying and spasming. The daily heaving, blood coming out of every orifice, heart pounding the rest of your body into submission. The sickly smell of mesna, the many, many sleepless nights thinking about death, wondering how it feels, wondering if it will be in a hospital bed just like the hundreds you've laid in before. Wondering if it will be sooner rather than later. The incredible quiet that envelopes everything when you realize you are alone inside your body, fighting with it, dying with it.

I dare not delve any deeper, I'd rather just forget it all.

ortho surgeon consultation on May 4th. We'll decide if I need to lose a hip in addition to all of this other nonsense.

until then, last week of chemo!

American Association for Cancer Research Annual Meeting

I will be leaving tomorrow to attend the American Association for Cancer Research's 100th Annual Meeting in Denver, Colorado as part of their Survivor-Scientist Program. This is the second annual meeting I will be attending, and my third AACR conference. I attended their Prevention conference the end of last year in addition to their annual conference last April.

Last year's annual meeting had such a profound impact on me. I'm not sure what I had expected prior to going last year...it was the first oncology conference I'd ever attended (okay, my first medical conference ever). I was overwhelmed by the number of people attending the conference...thousands and thousands of scientists. So many scientists, all passionate and dedicated to eliminating cancer from our world. Scientists who were real and caring people, all devoted to seeing an end to the devastation cancer brings to our lives. Exceptional people with many years of education who have dedicated their brilliance, their time, their passion and their lives to seeing an end to cancer.

It gave me such hope; it made me know that many people care about us and our struggle. I for the first time in my medical career saw the faces behind the scientific journal articles I'd always read. Real people with spouses and kids and a sense of humor. People I could have lunch with, have a conversation with.

It made me know that many people care about seeing an end to the pain and terror cancer brings to our lives. They are learning so much that will one day help us. And I met so many other survivors who were also advocates, who had done so much. I so wanted to emulate their advocacy, I wanted to make a difference to other cancer patients, as they did.

I was inspired in so many ways.

How I got involved in the Scientist-Survivor Program is a kind of fun story. A woman who had seen my web site emailed me. I'm not sure how she came to find my site as she is a long term kidney cancer survivor, not an appendiceal cancer patient. She wrote me to say that my advocacy efforts reminded her very much of the efforts of a friend of her, a kidney cancer survivor who founded the Kidney Cancer Association based out of Chicago, but who had later succumbed to the disease. She'd participated in advocacy efforts through that organization and gone on to become very influential in advocacy efforts on a state level.

It turned out she lived in a town only 30 miles from me, so strange as via the Internet I've comunicated with cancer patients from all over the world since publishing my site. Not only were we neighbors, we were about the same age. We traded phone numbers and talked for hours several times...we truly connected and developed a great respect for one another. She had participated in the AACR's Scientist-Survivor Program years before and said she wanted badly for me to become involved with the program. She sent me a link to an application to the program, said that a recommendation letter was required and that she wanted to write my recommendation letter. She asked me to please apply.

So, I filled out the application, not really knowing what I was applying to, sent the recommendation letter and waited to hear if I'd been accepted.

About the same time I sent the application, I'd received another email from a woman who wrote for CR Magazine, a new cancer magazine I was unfamiliar with. She had a cancer blogger column and asked if I'd be willing to be interviewed and for my blog to be the subject of one of her columns. I was very flattered and accepted. During the phone interview, I discovered the magazine was a journal of the American Association for Cancer Research...the same organization who sponsored the Scientist-Survivor Program. As it turned out, the editor of the magazine was also the Survivor and Patient Advocacy program director for the AACR; she was in charge of the Scientist-Survivor Program. The columnist for the magazine didn't know I'd applied to the Scientist-Survivor Program. Just a coincidence.

In the end I met the editor of the magazine, Gwen Darien, a woman I truly admire and who is a cancer survivor also, when I attended my first AACR annual meeting.

Such a cool sequence of events.

I've had an overwhelming number of those kinds of coincidences since first deciding to advocate for my cancer. In the end, I really don't think they are coincidences...I think I'm on the path I'm meant to be on. I am grateful for the purpose an initially terminal cancer diagnosis, though an experience horrible beyond words once, has given to my life.

I'll try to write here from the conference over the next several days. Chicago to Denver tomorrow! Stay tuned!

Article in the San Francisco News

Stem-cell stalemate: The push for cures may produce only disappointment - or worse, Peter Jamison, San Francisco News, April 14, 2009. Excerpt from page 5:

And CIRM's 2009 funding priorities speak volumes about the direction of its decision-making. In its first two years of operating — legal challenges kept CIRM from starting its operations until 2007, setting back its sunset date to 2017 — the agency has distributed more than $600 million in grants for basic science and facilities. By contrast, the next round of grants will devote more than $200 million to disease teams; the goal for these teams is to prepare therapies for FDA clinical trials within four years. As little as $20 million will go to basic research.

Found via: The California Stem Cell Story: Safety, Waste and Promises, David Jensen, California Stem Cell Report, April 15, 2009.

i may never be the same

The drama.

The excitement.

The friendship.

The laughter.

The rejection.

The politics.

The blood.

The boredom.

The creativity.

The anger.

The joy.

The noise.

The complete and utter exhaustion.

It was a roller coaster, I tell you. Twenty-five Grade 5 kids and three adults on a field trip to the National Gallery of Canada.

It was fun but it really knocked the stuffing out of me.

One Year Later...

It is 11:55 pm, April 15, 2009. It is the tail-end of the one-year anniversary of my double mastectomy. I didn't even realize it was the one-year anniversary until I was at my therapist's today, and she asked me how long it had been since the mastectomy. Then it dawned on me and I said, "Exactly one year ago today." People celebrate all sorts of anniversaries, but this particular anniversary is extra-special.

Okay, give me a moment. One year? Has it really been one year already? I vaguely remember the terror that I had on the eve of April 14, 2008-April 15, 2008. I didn't sleep a wink and took my last bath at 3:30 am. I watched the sun come up as I walked with Henry and my parents to the hospital (we live practically across the street from it). We crossed Fraser, passed through Robson Park, waited for the pedestrian-controlled light to turn green, crossed Kingsway, passed the Thankga Buddha store, and walked down into the outdoor parking lot of the hospital. I held Henry's hand as we waited for the the doors to the surgical daycare unit to open at 6:30 am. And if you want to hear the rest of the story, you can go back one year on this blog.

And that's what I've been doing tonight. I've been going back through my blog. I laugh in some parts, I shudder at others, and I almost cry and can't finish reading some entries. It's just a little something that I started writing for my friends and family when I was diagnosed in July 2007, but it became something bigger. I still get media requests for interviews about my blog, that has somehow touched other cancer patients, survivors, and those who love them. I found some purpose in what I had been going through, and one of those things was to educate the audience about what it can be like to go through cancer treatment at a young age, to be a mother to two young children, a wife to a successful man, and a professional woman getting another graduate degree--to be a cancer patient during a time when your life is just starting to make sense and come together. And then, you're not so sure about any of that anymore because now, you could die a lot sooner than you ever thought you would. The thought that I struggled with on a daily basis: I finally have all this--and now, NOW?, I have to leave it all?

A year later, I'm still struggling with that question.

Let's get this straight: as honest as I am in this blog, I frankly don't report EVERYTHING. I mean, who would? There's lot of stuff that we go through every day that is just too lame or annoying or tiresome to tell anybody. Plus, I respect the privacy of my loved ones who might not exactly enjoy being showcased here. But I know some of you might have heard that Henry and I have been going through an extremely rough patch in our marriage. And you could be asking yourself, What's this have to do with your cancer? Well, if it had nothing to do with cancer, I certainly wouldn't be talking about it. And if I even thought that it had nothing to do with cancer, then I'd say I was in complete denial.

The truth is, cancer took a toll on us. It's funny--I hear so many "success" stories--those that involve The Journey and The Reawakening or The Enlightenment. And I'm not saying that I haven't had those kinds of moments in my own journey during this past year and a half. But if you're looking for a certain kind of success story where everyone lives happier than ever post-cancer, this isn't it.

It's the one-year anniversary of the cancer being gone, and I'm celebrating it alone. In a way, that's fitting. Cancer is a really existential experience. You go inwards to places that you never even thought of, so far in you almost disappear. It really is one of those things that unless you've gone through it, you have no idea what I'm talking about. And that kind of experience is really difficult on the caregiver. Here is this person that you're trying to help and take care of, but they are so sick--so dying--that you can't reach them, that nothing you do will save them from that end. Truth is, we all come to an end. But to witness it day after day after week after month, for a whole year--that's another kind of torture and existential experience that is not understandable to someone who has not gone through that either.

For me and Henry, our experiences didn't match up. You might think that from the way I describe these experiences, that they share similarities, and in recognizing that, the two parties could help one another through the suffering. I can only speak from my experience obviously, but that was not the case for us. What happened? It's not that neither of us didn't care about the other's suffering. I feel that it was just the enormous sense of helplessness, from all around, that did us in. And during the months after the surgery, we tried very hard to rebuild our lives, but that pain and suffering ran so deep in each of us, that it was too late for damage-control.

It's a bitch--facing death at the age of 31. You look at your husband of three years, your children who are 3 and 4 years old. And you're just stunned, breathless. How? Why? Two simple questions that take the wind right out of you. And you see it in his eyes, in your husband's eyes--that mixture of courage and fear. He has to be strong for you, but truthfully, he's scared shitless. What do you do with that?

I can't tell you the story from that moment to this one. It's too painful for me to try to piece together the remnants that I still carry. Henry and I have faced moments like the one now, here, in the present, way too many times--much more than a couple of our age ever should have to. And it's that tightness in the chest, the way you look through your tears into the light bulb on the ceiling, and you know that if you survive this moment, you can survive anything. And you will.

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cheers,

dave

It's not a tumah!

Excellent news from the vet: Garland's lump is just a cyst, not a tumor. Whew. The vet said she could be prone to future cysts, so if we find another lump that seems similar, we'll just leave it alone. Thank goodness. She has to go in next week to get her stitches removed. As soon as her fur grows back, she'll be as good as new. Maybe she can try out for the cat rock band.

CONSECRATION IS BACK!!!

HOOHA!

cheers,

dave

Easter / Soccer Photos

Easter 2009 Raegan and Ravyn (before I / Rhonda found matching shoes for Ravyn so she could look like Ravyn)

Soccer with Ravyn "the Rock"