October 22, 2014

PS

The interventional radiology PA says my neck looks improved. I will see Nurse Jacque this Friday so she can access my port before my CT scan and MRI. She can check (and maybe Dr G too, although he doesn't officially see patients on Fridays). He will give me the scan results next Monday, so I'll have another few days to see if the port line continues to look better after I finish the antibiotic.

PPS My blood pressure has been high since Monday a week ago with my most recent dose of Avastin. Dr G now says that since my BP hasn't gone down very far, it will also be my last dose of Avastin. I've had a long run with that drug, it's helped, but eventually things do stop working.

I think they call it entropy.    : )

October 21, 2014

What's up

Now that the Jewish fall holy days are finished, I feel as though things are settling down. Except that last week I was diagnosed with an infection in my port line.

10-21-2014 (bad selfie)
(actually 10-13-2014)

















The line had been reddish for a few days but the nurses at Swedish urged me to contact Interventional Radiology and have someone else see it. I went in the next day, the IR PA (physician's assistant) prescribed oral antibiotics, told me to come back in a week, and if it hadn't cleared up sufficiently, he'd put me on intravenous antibiotics.

Yesterday the infusion nurses all agreed it looked better. Personally, I can't tell. But I will go back to see the IR guy tomorrow and eventually write an update.

October 13, 2014

Metastatic Breast Cancer Awareness Day



Today is Metastatic Breast Cancer (MBC) Awareness Day. 
We invite you to view our MBC awareness video at metavivor.org.


Sincerely,

METAvivor Research and Support

October 09, 2014

From one holiday to the next

It always feels as thought autumn is full of holidays and holy days. From starting a new year to the Great I'm Sorry (aka Yom Kippur) and then sliding into the harvest fest of Sukkot, it's one celebration after another. Unless you have metastatic cancer.

Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.

The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.

But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.

So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.

October 01, 2014

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.

September 30, 2014

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:
video

Chopped Liver Video Part 2:
video

Chopped Liver Video Part 3:
video

Chopped Liver Video Part 4:
video


September 22, 2014

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.

September 12, 2014

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.


September 05, 2014

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.

September 04, 2014

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.

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I dance with cancer. Oy!