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!
March 28, 2007
March 27, 2007
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!
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!
March 15, 2007
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®).
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®).
March 12, 2007
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!
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!
March 08, 2007
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!
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!
February 16, 2007
My doc is famous!
I saw the oncologist this week and he told me he’d been discovered by KING 5 TV.
Dr. G is part of Minor and James, and they now offer doctor profiles on line. The idea being that you can search who is out there and pick a doc based on what s/he looks and sounds like in a short video (as well as more usual criteria).
Want to hear Dr. G’s story?. He talks about his father, a survivor of the Treblinka death camp, and his daughter’s treatment for leukemia, as well as his medical philosophy.
What does this have to do with KING 5? Anchorwoman Jean Enersen heard about the Minor and James profiles and then interviewed Dr. G as part of a story on how people now choose their doctors. Read Jean’s story.
The best news is that the tamoxifen appears to be working so well that I don’t have to see Dr. G for three months!
Dr. G is part of Minor and James, and they now offer doctor profiles on line. The idea being that you can search who is out there and pick a doc based on what s/he looks and sounds like in a short video (as well as more usual criteria).
Want to hear Dr. G’s story?. He talks about his father, a survivor of the Treblinka death camp, and his daughter’s treatment for leukemia, as well as his medical philosophy.
What does this have to do with KING 5? Anchorwoman Jean Enersen heard about the Minor and James profiles and then interviewed Dr. G as part of a story on how people now choose their doctors. Read Jean’s story.
The best news is that the tamoxifen appears to be working so well that I don’t have to see Dr. G for three months!
February 15, 2007
May have to move my blog
I am having tremendous trouble with Blogger and may have to move my blog. If this happens, and you don't see any postings on this blog, feel free to contact me at my home email address -- if you know me, you already have it.
February 12, 2007
Sing out loud, sing out strong!
This past weekend my choir, Dunava, spent recording a few songs for a potential CD or at least a really good demo.
We went by ferry to an island in Puget Sound to a studio in a private home. Our gracious hosts had set up everything for us, so when we walked in the door all we had to do was warm up and SING!
We planned to record five songs:
Polegala Trava Detela (Croatian)
Trgnala e Vakla Zelka (Bulgarian)
Jos Ne Svice (Croatian)
Dobri Denek (Croatian)
Ogrjala Mesecinka (Bulgarian)
And we threw in an old favorite, the Bulgarian Dilmano Dilbero, just for fun.
At the end of the afternoon, we travelled by ferry to Vashon Island to stay overnight at Angels of the Sea, a lovely bed-and-breakfast in a converted church. We had potlucked lunch (vegetable sandwiches on focaccia, 7-layer dip, plenty of crunchy vegetables, and brownies). We also potlucked dinner -- sesame cold noodles with chicken, potato knishes, sauteed greens, salad with organic lettuces and goat cheese. This choir clearly travels on it's stomachs!
We opened a bottle of red wine while relaxing, then toasted ourselves with champagne and sparkling juice before sitting down to a festive meal.
While some of us were cooking, others were dancing all over the B&B. Plus we spontaneously burst into singing Queen's "Bohemian Rhapsody." Somehow, despite our 20 year age range, all of us knew all the words to this pop hit from the 1980's.
While digesting we listened to some potential songs to learn for the future. I shared a recording made at Camp Tel Yehudah in 1976 of me and my camp friends singing Haben Yakir Li (My Precious Son), in an arrangement by Malavsky originally created for a high school choir. I would love for Dunava to sing some Jewish music, and this has always been a personal favorite. So I found an Israeli company that has published it and wrote to order my very own copy! I also found a video on youtube of Israeli Cantor Udi Szpilman and his small men's choir performing a somewhat jazzoid version. You can see them here. The video is four and a half minutes long, so prepare to download.
Then we ate mango pudding for dessert and waddled downstairs to watch a video together.
We woke up to a fabulous breakfast of waffles, yogurt and fresh fruit prepared by our hostess, Marnie Jones, who also treated us to a harp concert. We returned the favor and sang to her. I think she enjoyed it!
No matter what use we make of the songs we recorded, it was a wonderful educational opportunity to learn something new (about how to record), to listen critically to ourselves and figure out how we can improve, and to enjoy one another's company without the pressures of work, spouses, children, pets, etc. What a terrific weekend!
We went by ferry to an island in Puget Sound to a studio in a private home. Our gracious hosts had set up everything for us, so when we walked in the door all we had to do was warm up and SING!
We planned to record five songs:
Polegala Trava Detela (Croatian)
Trgnala e Vakla Zelka (Bulgarian)
Jos Ne Svice (Croatian)
Dobri Denek (Croatian)
Ogrjala Mesecinka (Bulgarian)
And we threw in an old favorite, the Bulgarian Dilmano Dilbero, just for fun.
At the end of the afternoon, we travelled by ferry to Vashon Island to stay overnight at Angels of the Sea, a lovely bed-and-breakfast in a converted church. We had potlucked lunch (vegetable sandwiches on focaccia, 7-layer dip, plenty of crunchy vegetables, and brownies). We also potlucked dinner -- sesame cold noodles with chicken, potato knishes, sauteed greens, salad with organic lettuces and goat cheese. This choir clearly travels on it's stomachs!
We opened a bottle of red wine while relaxing, then toasted ourselves with champagne and sparkling juice before sitting down to a festive meal.
While some of us were cooking, others were dancing all over the B&B. Plus we spontaneously burst into singing Queen's "Bohemian Rhapsody." Somehow, despite our 20 year age range, all of us knew all the words to this pop hit from the 1980's.
While digesting we listened to some potential songs to learn for the future. I shared a recording made at Camp Tel Yehudah in 1976 of me and my camp friends singing Haben Yakir Li (My Precious Son), in an arrangement by Malavsky originally created for a high school choir. I would love for Dunava to sing some Jewish music, and this has always been a personal favorite. So I found an Israeli company that has published it and wrote to order my very own copy! I also found a video on youtube of Israeli Cantor Udi Szpilman and his small men's choir performing a somewhat jazzoid version. You can see them here. The video is four and a half minutes long, so prepare to download.
Then we ate mango pudding for dessert and waddled downstairs to watch a video together.
We woke up to a fabulous breakfast of waffles, yogurt and fresh fruit prepared by our hostess, Marnie Jones, who also treated us to a harp concert. We returned the favor and sang to her. I think she enjoyed it!
No matter what use we make of the songs we recorded, it was a wonderful educational opportunity to learn something new (about how to record), to listen critically to ourselves and figure out how we can improve, and to enjoy one another's company without the pressures of work, spouses, children, pets, etc. What a terrific weekend!
January 30, 2007
An Israeli Feast
Last Saturday night I helped host an Israeli feast (with three friends) to benefit Hadassah. We raised some money for a worthy cause, enjoyed a wonderful evening with friends old and new, and had the pleasure of sharing our love of Israeli food and culture.
Debbie and I dressed up in beautiful embroidered dresses; Rik wore a shirt with the collar open at the throat to show off his hairy chest and gold chain. We enjoyed appetizers in the salon (that’s the living room), then adjourned to the dining table for dinner and dessert. I even made Turkish coffee and "read" the coffee grounds for those who so wished. We listened to our favorite Israeli music throughout and after dinner danced a few Israeli folk dances.
Unfortunately our third partner was sick and couldn’t attend at the last minute, but I brought leftovers the next day and shared the photos.
Layl Yisrael-- An Evening in Israel
Benefiting Seattle Chapter Hadassah
27 January 2007 - 8 Sh’vat 5767
~ MENU ~
Pita with Za’atar (Wild Hyssop Spice Dip)
Israeli Olives from Kibbutz Beit Hashita
Crudités with Feta Cheese
Ajvar (it’s not Israeli, but we like it a lot!)
Hummus with Tahina
Salat Hatzilim (Eggplant Salad)
Spinach-Cheese Borekas
Zhoug (Yemenite Red Chili Relish)
Malt Star “Black Beer” (non-alcoholic)
Golan Winery Moscato Galilee 2005
Mount Tabor Estate Cabernet Sauvignon 2003 Galilee
Israeli Salad with Shamenet (Sour Cream)
Halibut Cheeks with Roasted Red Pepper Sauce
Artichoke Hearts with Fava Beans
Ajlouk de Courgettes (Zucchini Salad)
Mejadara (Biblical Lentil Pottage)
Oogat Shokolad “Sabra” (Chocolate Cake with Chocolate-Orange Sauce)
Halvah
Mint Tea
Turkish Coffee with Hel (cardamom)
Nescafé
Carmel Israeli Brandy “777”
January 19, 2007
No XRT
I saw the radiation oncologist today and he says he does not see much of a change between the May and December bone scans, so even though the PET/CT scan shows some activity, he would not treat me at this time. If I have increased pain, he would of course consider treating, but at this time, no radiation (XRT) for me.
Let's hope that the tamoxifen kicks some cancer butt and that my brief stint with pain disappears soon!
Let's hope that the tamoxifen kicks some cancer butt and that my brief stint with pain disappears soon!
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