Pinktober has begun

I'm not in the mood for a pink washing rant right now. Just PLEASE remember that if you feel pressured to buy something to support "breast cancer awareness" or other vague touchy-feely-good cause with no details, here are some things to keep in mind:

Before You Buy Pink

Breast Cancer Action coined the term pinkwashing as part of our Think Before You Pink® campaign. Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.

Critical Questions to Ask Before You Buy Pink

1. Does any money from this purchase go to support breast cancer programs? How much?

Any company can put a pink ribbon on its products. The widely recognized pink ribbon symbol is not regulated by any agency and does not necessarily mean it effectively combats the breast cancer epidemic. Some products sport pink ribbons to try to communicate that they are “healthy” and don’t contribute to breast cancer, such as a number of natural health and beauty products. Other products have a pink ribbon in order to indicate that the company supports breast cancer programs even if the company’s contributions are not tied to the purchases of the specific product bearing the ribbon. Still other companies give a portion of an item’s cost to a breast cancer organization but may require further action on the part of the consumer for the donation to be realized. Can you tell how much money from your purchases will go to support breast cancer programs? If not, consider giving directly to the charity of your choice instead.

EXAMPLE: In 2010, Dansko shoe company sold pink ribbon clogs. Consumers likely thought that a portion of their purchase of pink ribbon clogs went to a breast cancer program. However, purchase of the pink ribbon clogs was not connected to Dansko’s donation—none of the portion of the sales went toward their already set donation of $25,000 to Susan G. Komen for the Cure. No matter whether or not you bought the clogs, their donation was the same.

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

Many companies that sell pink ribbon products and donate a percentage of each sale to breast cancer programs fail to indicate which of the many different breast cancer organizations will get the money. Furthermore, the consumer is left to trust that these organizations are engaged in work that is meaningful and makes the greatest difference. If money goes to “services,” are they reaching the people who need them most? How do screening programs ensure that women can get treatment? And how do breast cancer awareness programs address the fact that we already know that breast cancer is a problem and that action is needed in order to end the epidemic? Does the money go to truly addressing the root causes of the epidemic, like social inequities that lead to women of color and poor women dying more often of breast cancer, or environmental toxins that are contributing to high rates of breast cancer? Before donating, check the recipient organization’s website to make sure that its mission and activities are in line with your personal values. If you can’t tell, or you don’t know what the organization does, reconsider your purchase.

EXAMPLE: The KISSES for a Cure music box is advertised by its maker, The Bradford Exchange, online with the following: “A portion of the proceeds from this music box will be donated to help fight breast cancer.” It is not clear what breast cancer organizations would benefit, how much money they would receive, and what programs or work would be funded by the donation.

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

Some companies that indicate that a portion of the proceeds from the sale of a particular pink ribbon product will go to support breast cancer programs put an arbitrary “cap” on their maximum donation. Once the maximum amount has been met, the company may continue to sell the product with the pink ribbon without alerting customers that no additional funds will be donated to breast cancer organizations. This means you may be buying a product for which none of your purchase price will go to a breast cancer cause but only to the bottom line of the company.

EXAMPLE: In 2010, Reebok marketed a line of pink ribbon emblazoned footwear and apparel at prices ranging from$50 to $100. Though it heavily promoted the fact that some of their pink ribbon product sales would be donated tothe Avon Breast Cancer Crusade, they set a limit of $750,000, regardless of how many items were sold, and therewas no mechanism in place to alert consumers once the maximum donation had been met.

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breastcancer? What is the company doing to ensure that its products are not contributing to the breastcancer epidemic?

Many companies have sold pink ribbon products that are linked to increased risk of breast cancer. We believe that companies that are profiting from building a reputation based on their concern about breast cancer have a responsibilityto protect the public from possible harms when scientifi c research indicates that there is a risk or plausible reason forconcern. Some of the earliest cause-marketing companies were well-known cosmetics companies that continue to sell cosmetics containing chemicals that have been linked to breast cancer. Even car companies have gotten in on the action and sell cars that emit toxic air pollutants in the name of breast cancer. In considering a pink ribbon purchase, does the product contain toxins or otherwise increase our risk of breast cancer?

EXAMPLE: In 2011, Susan G. Komen for the Cure commissioned a perfume called Promise Me that contains unlisted chemicals that are regulated as toxic and hazardous, have not been adequately evaluated for human safety, and have demonstrated negative health effects. Although Komen said they would reformulate future versions of the perfume, without official adoption of the precautionary principle, there is no guarantee that future versions would be better.

If you have doubts about your pink ribbon purchase after reviewing these critical questions:

1. Take action to demand pink ribbon products don’t contain chemicals linked to breast cancer.
2. Write a letter asking the company to be transparent about its donations.
3. Consider giving directly to a breast cancer organization whose work you believe is most essential to addressing the breast cancer epidemic.

Jill again: I have removed the final paragraph because it asks specifically for donations to Breast Cancer Action. I am not opposed to this organization, but I want all of us to donate where we feel our dollars will be best used.

So please: don't buy the pink crap for me. Or for you. Instead, make a donation to a worthy cause. Your donation helps fund research. New treatments keep me and others like me alive longer with good quality of life. If you care about me or others with stage IV breast cancer, giving money is the way to go.

Here are some of my favorite breast cancer organizations that you may not have heard of:

Gilda's Club Seattle

Swedish Medical Center

Breast Cancer Action

METAVIVOR

Thank you.

A happy new year starts off

I meant to post something significant if not downright mystical last week as the new Jewish year approached. Instead, I made chopped liver. And ginger cake. And plum kuchen from my friend's miter's recipe. And 100 travados.

I'm a practical kind of person, after all, so a quasi-mystical post wouldn't have seemed right somehow. Instead, here is my dad's recipe for chopped liver, a Jewish delight that resembles a rough pate de fois gras only made from chicken instead of goose livers.

Below is the chopped liver technique. Video by Rik Katz; fun also provided by Bob and Boychik. Shana tova umetuka veshalom - wishing us all a new year of joy, sweetness, good health, and peace around our world.

Chopped Liver Video Part 1:

Chopped Liver Video Part 2:

Chopped Liver Video Part 3:

Chopped Liver Video Part 4:

Chemo update

I finished the third dose of Abraxane last week and this morning I noticed that my hair has started to fall out. Right on time, I suppose. I made an appointment for tomorrow morning with the hairdresser to buzz cut my hair and trim my wig. I may want to buy a second wig in a slightly different color. My wig, which cost a lot of money and is artificial, is much darker than my hair color now after a summer in the sun.

Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.

My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.

My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.

I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.

And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.

Still good

Haven't written in a week but all is good so far. I had the second dose of Abraxane and feel fine, haven't lost any hair yet.


In the meanwhile, here is a photo of one of my orchids blooming AGAIN! This is at least the third time for this plant. I think that makes me a successful orchid mama, just like my friend S's mother. This picture is in Jackie's memory, who taught me how to care for orchids.

Meanwhile, while we were in Bulgaria...

Mentally going back to Bulgaria now --

We began our second to last day still in Pazardzhik. In the morning T our guide and teacher gave us two hours to ask her questions, listen to her demonstrate different styles, and talk to us about the importance of vocal technique.

This is what I recall from T's talk: In the days before there were large state music schools, people simply sang the way they sang, without much thought for how it sounded and what singing in this way might do for their vocal chords' health. They were singing for pleasure, not for recording etc.

As training singers began to learn proper vocal techniques, more and more began to move traditional songs and styles into proper placement in the throat. They learned to use their skills to reproduce the raw, village sound without blowing out their voices. T said that this is what keeps her singing in her large range at the anne of 54. (She and I are only a few months apart in age but of course have lived very different lives.)

T spoke at length about how to increase one's vocal range and keep it healthy at both the top and bottom ends. As a soprano, I loved listing to her demonstrate how to maintain and grown the upper end of her voice while not losing the lower end.

Later that afternoon we drove the nearby village of  Patelenitsa for a local festival. This small town is something of a suburb of Pazardhik but has it's own population and customs. Rainstorms interrupted the planned start of the festival, but after a few hours of drying the microphones with hairdryers, they started. A woman born here but now living in Calgary was home for a visit and wanted to meet the American singers. She introduced me to her mother, a member of the local choir.

RIGHT The local choir singing in the rain with their accompanist whose accordion is shielded by the umbrella-wielding conductor.

Abraxane again

Yesterday I had my first dose of Abraxane in this third round of that chemo. Today I feel fine, maybe had the tiniest queasy tummy last night so took some Zofran just in case.

However, my day at Swedish was too long. I arrived at 130 on time, at 230 a nurse came out with the consent form which I was supposed to sign with Dr G but of course we didn't do this since I've had Abraxane twice before.

Got called back to a chair at 245. Then my port wouldn't give any blood return no matter which way I positioned myself or coughed. At 3:45 I sent Rik home to relax after his first day at school, feed and walk the dogs, etc. I received a dose of alteplase, a drug which can unclog a stuffed up port. An hour later, thankfully good blood return! In the meantime I ate a soggy egg salad sandwich from the bagged lunches and enjoyed a cherry turnover Rik brought up for me.

By 4:45 pm I was so tired of waiting that I asked the nurses to call Dr G's office and get permission to skip the Avastin, which would have added another hour to the total infusion time. Nurse Jacque called out to him in the hallway, and he said "Okay, but she can go home!" Creative thinking nurse Mary Beth called the pharmacy since the Avastin was already mixed (i.e., ready to give to a patient) and they assured her that they could use it the next day.

I was done with the pre-meds (like I needed steroids at this point, I was so wired), Abraxane and Faslodex. I talked with my mom for a half-hour, read some more, and tried to relax. Rik met me at 6:45, we went home, and by 10:00 I was ready to eat some leftover chicken. I was in bed at 11 with all my drugs to relax me and felt fine today.

I take responsibility for my port causing a longer visit but for a two hour infusion to take five hours seems excessive to me. After my four appointments at Swedish's First Hill Cancer Institute, assuming the Abraxane works well for me, I will schedule all my ongoing infusions at the Ballard campus, which has a much better nurse:patient ratio.

Update re Dr G

I saw Dr G a few days ago and learned from the scan reports that my cancer has stayed the same in my brain, but the mets in my liver have grown significantly. My tumor marker also went up by 100 points. So it's definitely time to start another chemo. As Dr G put it, Xeloda clearly worked on my brain, but not so well on my liver. The PET/CT scan also showed a new metastasis in my left elbow, as persistent pain there indicated to me night be the case.

So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.

I feel good, and hope that next week's chemo will start to make a difference quickly!

12th metsiversary

Today is the twelfth anniversary of my diagnosis with metastatic breast cancer.

It's the only day in which I let myself blow a Bronx cheer / wet raspberry / mouth fart to cancer. Nyah-nyah! It's been twelve years and I'M STILL HERE!

The rest of the year I abide by the deal I made long-ago with my cancer: it could stay with me as long as it was quiet, because (sadly for both of us) if I die, it dies too. Read this blog post for more on the dream that started my deal.

I've planned all kinds of ways to celebrate my metsiversary over the years. Some were large parties; others were intimate gatherings -- but all were with friends and even occasionally with family. It's the kind of event that lends itself to celebrating with people. Tonight, however, is also a friend's very significant birthday, and we've been invited to celebrate with her. I think she'll understand if my toast to her also includes a nod to me.

My favorite toast is the one which my friend K graciously loaned to me so many years ago:

"May all your joy be true joy,
And may all your pain be champagne!"

If you want to join my celebration, then feel free to invite your friends and family to eat some chocolate and drink a glass of bubbly with you. Together we could be a global phenomenon!

Back to Bulgaria (metaphorically speaking)

It's time to write more about Dunava's trip to Bulgaria.

Upon leaving Kyustendil and the "Silver Buckle" festival, we took the long drive to Pazardzhik. We stayed in the lovely Hotel Primavera, a small but seemingly new pensione in the town center. I was so tired from the previous days that I stayed in the hotel and did not attend either the afternoon workshop with our hosts, Ensemble Pazardzhik, or dinner with the rest of the group. The rest did me a world of good, because the next day we could choose either a half-day trip to nearby Plovdiv or the same amount of time on our own. Several of us chose Plovdiv, even though it was difficult to get back on the bus again. Thankfully our driver N is a man of excellent good humor.

Sundial on mosque, Plovdiv

Restored Roman vomitory, Plovdiv

Plovdiv is divided, like Jerusalem, into a very old city and a new city. The highlights of the old city are the many restored ruins, which feature a complete Roman amphitheater still used for performances. Our small group explored the tourist part of the old city. New shops, cafes, and restaurants abound. Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to "pay" the lady outside 50 stotinki, which regretfully doesn't make the toilets any cleaner.

Restored Roman amphitreatre, Plovdiv

We climbed up the cobblestone streets and looked in almost every antique shop to assist J in her hunt for antique jewelry and R for her search for authentic clothing. At the top of the hill we stopped for a light lunch overlooking the amphitheater.

Upon our return to Pazardzhik, I joined everyone for the afternoon workshop, during which I tried to pick up the four songs they had begun the day prior. We enjoyed a yummy dinner in an outdoor restaurant. Unfortunately, what felt like every mosquito in Bulgaria joined us and nibbled on D and I for their dinner. After too many bites to count, I headed back to the hotel.

On the way I saw a most beautiful cocker spaniel, enjoyed yet another conversation in French with M, his maman, and picked up a few more mosquito bites.

M and her English cocker spaniel David, Pazardzhik

Cancer update

I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.

I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.

We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!

In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).

According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:

Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)

Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...