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!
March 12, 2007
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!
January 17, 2007
Scan Results
Got my PET/CT results yesterday -- I have 3 spots of active disease in my sternum, spine (T12) and right scapula. The scapula is the only one which hurts. The spot on my right arm which has been bothering me did not register!
I will see the radiation oncologist on Friday about radiating the spine and perhaps the scapula. And my medical oncologist has switched me from Aromasin to tamoxifen, which I never took. We'll try it for a month, see how I tolerate it, and then maybe try it for a longer period of time.
I'm back on the pony that goes up and down on the merry-go-round.
I will see the radiation oncologist on Friday about radiating the spine and perhaps the scapula. And my medical oncologist has switched me from Aromasin to tamoxifen, which I never took. We'll try it for a month, see how I tolerate it, and then maybe try it for a longer period of time.
I'm back on the pony that goes up and down on the merry-go-round.
January 10, 2007
A new cancer image
Yesterday I thought of a new cancer image:
I'm on a merry-go-round with my cancer. Sometimes I ride on a bench and hardly move at all; other times I'm on the horses that go up and down, up and down. And I'm staying on this merry-go-round until there's a cure.
No more roller coasters for me -- my ride with cancer doesn't end, it just goes 'round and 'round...
I'm on a merry-go-round with my cancer. Sometimes I ride on a bench and hardly move at all; other times I'm on the horses that go up and down, up and down. And I'm staying on this merry-go-round until there's a cure.
No more roller coasters for me -- my ride with cancer doesn't end, it just goes 'round and 'round...
January 08, 2007
New Year, Same Cancer
We rang in the new year with Rik's parents at their winter home in Florida. After a relaxing visit, and a hectic trip back, I slept for 13 hours! Who knew it takes a vacation to recover from your vacation?
I had a bone scan in December, but the results were inconclusive. I may or may not have new or active metastases. So on this Thursday I will have a PET/CT test. This test measures the uptake of glucose. Since active tumors absorb glucose more rapidly than regular tissue, it gives a good measure of tumor activity. It's also VERY expensive -- about $4000. Thankfully our health insurance will cover the costs.
But over the weekend I noticed some discomfort in my right arm, which to me indicates tumor activity. So I have called my oncologist and hopefully will be able to see him within a couple of days of the scan, to get the results, see if the pain in my right arm really is active disease, and talk about treatment options.
I tihnk we are about to take another ride on the cancer roller coaster. Are you ready?
I had a bone scan in December, but the results were inconclusive. I may or may not have new or active metastases. So on this Thursday I will have a PET/CT test. This test measures the uptake of glucose. Since active tumors absorb glucose more rapidly than regular tissue, it gives a good measure of tumor activity. It's also VERY expensive -- about $4000. Thankfully our health insurance will cover the costs.
But over the weekend I noticed some discomfort in my right arm, which to me indicates tumor activity. So I have called my oncologist and hopefully will be able to see him within a couple of days of the scan, to get the results, see if the pain in my right arm really is active disease, and talk about treatment options.
I tihnk we are about to take another ride on the cancer roller coaster. Are you ready?
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