November 15, 2014

My 55th birthday

Today I celebrated my 55th birthday with my hubby and dogs, and five very close friends who have all known me for twenty years (or longer, in one case). We ate too much chocolate, drank a little too much champagne, and talked for several hours.

One birthday card quoted Marcel Proust. His words belong to everyone in the world.

Let us be grateful to the people who make us happy.
They are the charming gardeners who make our souls blossom.

To friends near and far, l'chaim -- to life!

November 08, 2014

Done with acupuncture

Dr Rudolph and I agreed that while I am in a treatment that has a side effect of neuropathy, the acupuncture is simply trying to keep my feet at their current (or perhaps a bit reduced) level of discomfort. It's kind of expensive to continue just to keep this holding spot, so I have decided to stop acupuncture for now. If the neuropathy progresses, or if I change treatments, I can look at starting acupuncture again.

In the meantime, I'll continue with gabapentin, L-glutamine powder, and the occasional use of 5% lidocaine cream, which is available over the counter.

November 02, 2014

Tumor markers down


I saw Dr G last week and after repeat scanning of my liver and brain, it appears that my mets are stable and my tumor markers have dropped another 50 points.

The potential infection in my port line may or may not exist. Last week I saw an infectious disease specialist who is not convinced that I have an infection. He wants me to stop using my port for blood draws a few days before using it for chemo, to give anything that might be brewing a chance to heal. So I will go early to chemo, have my blood drawn for labs, and spend an extra hour in Ballard waiting for results, instead of having a phlebotomist stick me in the arm, and then run out of usable veins in a matter of weeks. That's why I got a port in the first place. Lymphedema in one arm means no needle sticks; crappy small veins in the other arm means I prefer to use the port. And no one wants to have to stick me in the feet or in the neck, the best other options. Uggh….

Back for more chemo tomorrow!

Acupuncture

I may not have blogged already about treating my neuropathy with acupuncture. Someone in my support group mentioned this as a viable alternative and I decided to check it out. I'd tried acupuncture the second time I was on Abraxane and it did seem to give some relief. (Unfortunately, Dr G tried Taxol and it brought the neuropathy in my feet back, raging, after only one dose.)

This time I am seeing Dr Gregory Rudolph at Swedish Pain and Headache Services. He's an MD as well as a licensed acupuncturist.

The treatment goes in six visits - four that are one week apart, and the last two which are two weeks apart. He uses acupuncture needles plus mild electric stimulation.

After the first visit, I didn't notice any difference.

On the second visit, in additional to needles on the top of my feet and shins, Dr Rudolph placed one needle in the ball of each foot and a small, gold stud in each ear. Evidently the ear is a microcosm of the body and this was supposed to help with pain management. I don't know which point was responsible - the ear or the ball of the foot - but I could barely walk that week and the pain/numbness/tingling felt out of control. I was miserable.

I told Dr Rudolph about this on my third visit. I wanted to avoid the ear studs, since placing them was painful to me and I hadn't brought along my lidocaine cream. We agreed to try it the next time with me using the cream. He did not place any needles on the bottom of my feet.

For the fourth visit, I was prepared and used the lido cream about 30 minutes before my appointment. Dr Rudolph placed two gold studs in each ear, but hadn't told me in advance where the second stud was to go, so that area was not treated with lido cream. Given my lack of discomfort with the numbed ear, he agreed that the lido cream worked and put the second stud in a spot that would also work for pain management and where I had rubbed in the lido cream. Again, he did not put needles on the balls of my feet.

That was last Thursday. All four gold studs are still in place. My feet don't feel any different. Dr Rudolph had asked if my energy felt different. Since I spent all of Friday and much of Saturday in bed, I can't say that I have better energy. Different - as in fatigue - just not better.

I start another cycle of Abraxane tomorrow and will get acupuncture again on Thursday. We'll see how it helps!

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.

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I dance with cancer. Oy!