People Magazine quote

The article on Elizabeth Edwards begins on p. 54. I am quoted in a side bar entitled "When Breast Cancer Returns" on p. 56.

"Jill Cohen thought she had beaten breast cancer diagnosed three years earlier, when, in 2002, cancer was found again -- this time in her bones. But on a regimen including hormone therapy and radiation, Cohen , 47, is very much on the go, volunteering and traveling with her husband. 'This is not the life I planned,' she says, 'but it's a good life anyway.'"

I'm in People Magazine!

In tomorrow's People Magazine, there will be a story on Elizabeth Edwards' cancer recurrence with metastatic breast cancer and a quote from yours truly!

In the end, the side bar with my story was shortened to make room for news about White House press secretary Tony Snow's recurrence with stage IV colon cancer. However, you can read my one quote in the issue appearing on news stands tomorrow (with American Idol on the cover).

Now how much do I have left of my 15 minutes of fame?

SONG: I am not dead yet!

While in Vegas three of us at the retreat saw "Spamalot." Adapted for Broadway from the film "Monty Python and the Holy Grail," it was laugh-out-loud funny. I laughed, I cried, I snorted, I blew my nose repeatedly.

Here is a quote from one song that we thought was particularly appropriate to living with mets. We liked it so much that after the show we bought buttons imprinted with "I'm not dead yet." Next morning we wore them to our first session and sang this verse from the song --

I am not dead yet
(I can dance and I can sing)

I am not dead yet
(I can do the Highland Fling)

I am not dead yet --
No need to go to bed
No need to call the doctor 'cause
I'm not yet dead!

Weekend retreat in Vegas

I am back from a weekend retreat in Las Vegas for young women with metastatic disease sponsored by the Young Survival Coalition. There were 20 of us, all with mets, but receiving different treatments. All of us were well enough to travel. (Several women were not able to attend because they did not have the strength to manage the air travel.)

It was nonstop talking, eating, strolling the Strip, more talking, more eating, learning some relaxation techniques, sitting by the pool and even a spa treatment. What I enjoyed the most was the opportunity to be with women who "get it" -- the realities of living with advanced cancer.

I arrived Thursday night just in time to see the news about Elizabeth Edwards' cancer recurring. Now we women with mets have a poster girl for our disease. I was struck by the Edwards' poise in relating this terrible news to the media. How much harder it must be to face one's worst possible cancer fear while under public scrutiny! Still, Mrs. Edwards' recurrence will raise the profile of metastatic breast cancer, or what I like to call the darker shade of pink.

I had a chance to speak with a reporter from People Magazine for a sidebar on their upcoming story on the Edwards. I promise to post with the link if I get mentioned!

Tykerb® not a cure

You may have seen TV news reports about Tykerb® (lapatinib), the new targeted agent used to treat HER 2+ breast cancer. Please don't jump to any conclusions about a cure. It can be an effective drug (I know someone who's taken it successfully in a clinical trial for a couple of months) but it's not the cure. Even my friend who's been taking it only received a few months of benefit before her disease began to grow again.

Rik saw the report on TV and called to me with great excitement, "Have you heard about this?" He focused on the subliminal "breast cancer cure" message and didn't remember (if he ever knew) my HER status. It just goes to show that even those closest to us can be suckered by the press if they don't remember every detail of our disease and treatment.

The good news is that targeted agents affecting cancer cells in very specific ways appears to be the wave of the future as far as research goes. As my oncologist tells me, I just have to live long enough for the next new thing, and new things are coming down the pipe every month.

Here's a summary of the real scoop from the National Cancer Institute. You can read the full article. Note that NCI says Tykerb® "delays progression."

Lapatinib (Tykerb®) Plus Capecitabine Delays Progression of HER2-Positive Breast Cancer
Key Words

Summary

Combining the experimental targeted agent lapatinib (Tykerb®) with the drug capecitabine delayed the progression of breast cancer for nearly twice as long as did treatment with capecitabine alone in patients with advanced breast cancer that had progressed following treatment with trastuzumab (Herceptin®).

Great article in Seattle Times

It was a relief to read this article in the Seattle Times. The author describes how several people live with advanced cancer and AIDS. Not garden variety breast cancer, the kind I was originally diagnosed with in 1999, easily treated and supposedly never returning. No, this was about BAD cancer, the kind that invades your whole body, keeps you in treatment forever and eventually kills you.

Read it.

I know Jerry from my volunteer work at Gilda's Club and Pat from my work producing the NW AIDS Walk. I was happy to read that Pat is still around after all these years!

Back from Young Survivors conference

A couple of weeks ago I attended a conference for young women surviving breast cancer. While there, I met a woman who has lived with mets for 31 years!

Here's what I learned:

Dr. Funmi Olopade, oncologist at U Chicago (and a colleague of my cousin!) reminded us that breast cancer is not one disease but many -- Basal-like (triple negative, ER-, PR-, HER2-); Her 2 +; and ER+ (Lumina A and Lumina B).

Physiatrist Dr. Julie Silver said don’t assume all your fatigue is due to cancer. It could be skipped meals, not enough protein, too much caffeine. At her suggestion, I started wearing a pedometer to be sure I get 10,000 steps daily. I'm at 3751 right now, with quite a way to go to get to 10,000 in one day.

From Dr. Andrew Putnam, a pain management specialist, I learned that pain can be physical, psychological, social, spiritual, even existential.

Sage Bolte is an oncology social worker. She recommended the following websites for how friends can help:
http://www.lotsahelpinghands.org
http://www.caringbridge.org
http://www.carepages.org

Plus she said, "Find what works for you: Who cares if it’s the placebo effect if it works!?"

After the conference we learned that we had all been exposed to the norovirus at the hotel. The friend I traveled with was quite ill. I didn't even get an upset tummy. And this is the second time I ahve been exposed to norovirus since December. Asied from cancer, I must be as healthy as the proverbial horse!