While I have been recovering I haven't done any work in the garden. Rik has kept the grass mowed, but the strawberry and raspberry patches were choked with weeds and grass. I haven't wanted to water anything (and we've had a dry spell for the past two weeks), because I didn't want to encourage the weeds. Every day the strawberries and raspberries would put out more flowers and fruit, and things were just out of hand.
So I took S's idea from seven years ago, when I was recovering from the broken leg and couldn't do things for myself. She said, "Ask a group of people to come over and do the project. You'll be amazed at how easy it is for people to say yes."
Last week I sent out an email "invitation" to many friends to come over and help weed the garden today. Eight people showed up and in the course of two and a half hours we did it all. Weeded the strawberries and raspberries, trimmed back the ferns, removed starts that were growing in the wrong places, and even hacked up a whole row of unwanted raspberries, weeds, and a cherry tree offshoot which we have been trying to get rid of for years. We even spread compost around the strawberries and raspberries, something they haven't had since we moved in seven years ago. Rik transplanted the cherry tree and we will see if it takes.
Now that's what I call good friends -- they work all afternoon in your garden, visit and tell stories, and all they ask in return is a cold drink. Of course we also had some nibbles -- goat cheese and crackers, fruit salad, vegan orange/lemon cake, chocolate pound cake, rosemary shortbread cookies, iced lemon-ginger and mint tea.
It was a glorious afternoon to be outdoors in the sun with friends.
Sunday, May 31, 2009
Transcriptional profiles of subsets within the CD34+ cell population in chronic phase CML
The hematopoietic stem cell in chronic phase CML is characterized by a transcriptional profile resembling normal myeloid progenitor cells and reflecting loss of quiescence by Ingmar Bruns and 16 co-authors, including Rainer Haas, Leukemia 2009(May); 23(5): 892-9 [Epub 2009(Jan 22)]. PubMed Abstract:
[Thanks to Alexey Bersenev].
We found that composition of cell subsets within the CD34+ cell population is markedly altered in chronic phase (CP) chronic myeloid leukemia (CML). Specifically, proportions and absolute cell counts of common myeloid progenitors (CMP) and megakaryocyte-erythrocyte progenitors (MEP) are significantly greater in comparison to normal bone marrow whereas absolute numbers of hematopoietic stem cells (HSC) are equal. To understand the basis for this, we performed gene expression profiling (Affymetrix HU-133A 2.0) of the distinct CD34+ cell subsets from six patients with CP CML and five healthy donors. Euclidean distance analysis revealed a remarkable transcriptional similarity between the CML patients' HSC and normal progenitors, especially CMP. CP CML HSC were transcriptionally more similar to their progeny than normal HSC to theirs, suggesting a more mature phenotype. Hence, the greatest differences between CP CML patients and normal donors were apparent in HSC including downregulation of genes encoding adhesion molecules, transcription factors, regulators of stem-cell fate and inhibitors of cell proliferation in CP CML. Impaired adhesive and migratory capacities were functionally corroborated by fibronectin detachment analysis and transwell assays, respectively. Based on our findings we propose a loss of quiescence of the CML HSC on detachment from the niche leading to expansion of myeloid progenitors.
[Thanks to Alexey Bersenev].
Updates sent to Twitter, May 14-30
Updates about CSC sent to Twitter during May 24-30:
News item: Lung stem cells might cause cancer: http://is.gd/Jd5F Based on OA article [May 29]: http://dx.doi.org/10.1073/pnas.0900668106
[PubMed Citation][Full text of the article is publicly accessible (via Gratis OA)].
Molecular signatures of prostate SC provide insights into prostate cancer (OA) [May 29]: http://dx.doi.org/10.1371/journal.pone.0005722
[PubMed Citation][Full text is publicly accessible (via Libre OA)].
Cancer stem cells in hepatocellular carcinoma: Recent progress and perspective [May 26]: http://www.ncbi.nlm.nih.gov/pubmed/19464789
About inhibition of ABCG2-mediated multidrug resistance as a way to help to eradicate CSC (OA) [May 24]: http://tinyurl.com/q5zzp8
[PubMed Citation][Full text is publicly accessible (via Libre OA)].
News item: Lung stem cells might cause cancer: http://is.gd/Jd5F Based on OA article [May 29]: http://dx.doi.org/10.1073/pnas.0900668106
[PubMed Citation][Full text of the article is publicly accessible (via Gratis OA)].
Molecular signatures of prostate SC provide insights into prostate cancer (OA) [May 29]: http://dx.doi.org/10.1371/journal.pone.0005722
[PubMed Citation][Full text is publicly accessible (via Libre OA)].
Cancer stem cells in hepatocellular carcinoma: Recent progress and perspective [May 26]: http://www.ncbi.nlm.nih.gov/pubmed/19464789
About inhibition of ABCG2-mediated multidrug resistance as a way to help to eradicate CSC (OA) [May 24]: http://tinyurl.com/q5zzp8
[PubMed Citation][Full text is publicly accessible (via Libre OA)].
Saturday, May 30, 2009
Things we have in common....
I've been a part of the community of cancer patients for 8 years now. I've communicated with hundreds of cancer patients via my web site, cancer survivor events, conferences, walks. I've noticed common themes arise in the cancer community. Things I thought were unique to my experience are not.
Life is different for all of us after cancer. We don't finish treatment, enter remission and go back to our old lives. Cancer changes us forever. A new friend who is also an 8 year survivor of advanced cancer told me a day doesn't go by that cancer does not enter her mind. Mine either. Cancer is in our thoughts every day after we are diagnosed, even years down the road. I communicate with cancer patients daily, so I will always be in the cancer world, but I noticed after I finished cancer treatment and before I became an advocate that I thought of cancer every day even when I tried not to. Life after cancer was not what I expected it to be...cancer isn't something you leave behind; you take the experience with you everywhere you go for the rest of your life. Your life becomes divided into "before cancer" and "after cancer". Interesting, I've had a few 20 year appendix cancer survivors write me after finding my web site. Two decades later, they are Googling appendix cancer.
I've noticed many of us have a great need to find purpose in our lives. After cancer treatment, I became obsessed with finding a purpose for my existance. I read a bazillion books on finding your life purpose. I'd actually had been looking for possible new career paths and thinking about my purpose before my diagnosis. Searching for purpose is also a middle age thing, but since most of us with appendix cancer are diagnosed at middle age, I think our quest for purpose becomes compounded. Sometimes it almost seems we feel a need to feel worthy of our survival, to earn the right to remain cancer-free, to stay alive. Kind of funny, but before cancer I didn't feel such a great need to be worthy of being alive, I don't think. I was a good person, but I took being alive and planning a future for granted. It's kind of ironic that I didn't appreciate being cancer free before I was diagnosed with cancer. I should have.
I've also noticed that after cancer most of us place much less value in our careers. After cancer we go back to work, but it's not the same. Before cancer our careers defined us, gave us value. But after cancer, they aren't quite so important, they fall short, they often aren't enough. Our values have changed. Now for me my nursing career has become almost a side job, my purpose is more about the things I don't get paid to do.
We also become much more spiritual. For me spirituality is not the same as religion.
I was always more spiritual than religious, but now I spend more time asking bigger and more profound questions about time and life. Simple and pat answers aren't enough anymore. I do a lot more exploring, a lot more searching, a lot more wondering. In a spiritual sense, I have become more open-minded, more accepting of wonder. I'm much more into the big picture now, less into the small details.
We also learn to value quality over quantity. We all want more time, but we want it to be time we can use to live well. We've learned from being in the cancer community that living longer is not always better. We've all lost friends and are grateful when their suffering is finally over. But whenever we've lost someone, we've wondered, just for a bit, if we might be next.
Life is different for all of us after cancer. We don't finish treatment, enter remission and go back to our old lives. Cancer changes us forever. A new friend who is also an 8 year survivor of advanced cancer told me a day doesn't go by that cancer does not enter her mind. Mine either. Cancer is in our thoughts every day after we are diagnosed, even years down the road. I communicate with cancer patients daily, so I will always be in the cancer world, but I noticed after I finished cancer treatment and before I became an advocate that I thought of cancer every day even when I tried not to. Life after cancer was not what I expected it to be...cancer isn't something you leave behind; you take the experience with you everywhere you go for the rest of your life. Your life becomes divided into "before cancer" and "after cancer". Interesting, I've had a few 20 year appendix cancer survivors write me after finding my web site. Two decades later, they are Googling appendix cancer.
I've noticed many of us have a great need to find purpose in our lives. After cancer treatment, I became obsessed with finding a purpose for my existance. I read a bazillion books on finding your life purpose. I'd actually had been looking for possible new career paths and thinking about my purpose before my diagnosis. Searching for purpose is also a middle age thing, but since most of us with appendix cancer are diagnosed at middle age, I think our quest for purpose becomes compounded. Sometimes it almost seems we feel a need to feel worthy of our survival, to earn the right to remain cancer-free, to stay alive. Kind of funny, but before cancer I didn't feel such a great need to be worthy of being alive, I don't think. I was a good person, but I took being alive and planning a future for granted. It's kind of ironic that I didn't appreciate being cancer free before I was diagnosed with cancer. I should have.
I've also noticed that after cancer most of us place much less value in our careers. After cancer we go back to work, but it's not the same. Before cancer our careers defined us, gave us value. But after cancer, they aren't quite so important, they fall short, they often aren't enough. Our values have changed. Now for me my nursing career has become almost a side job, my purpose is more about the things I don't get paid to do.
We also become much more spiritual. For me spirituality is not the same as religion.
I was always more spiritual than religious, but now I spend more time asking bigger and more profound questions about time and life. Simple and pat answers aren't enough anymore. I do a lot more exploring, a lot more searching, a lot more wondering. In a spiritual sense, I have become more open-minded, more accepting of wonder. I'm much more into the big picture now, less into the small details.
We also learn to value quality over quantity. We all want more time, but we want it to be time we can use to live well. We've learned from being in the cancer community that living longer is not always better. We've all lost friends and are grateful when their suffering is finally over. But whenever we've lost someone, we've wondered, just for a bit, if we might be next.
birthday
Today I celebrate,
Today Raegan has a birthday so I celebrate, I also celebrate the home going of my father who passed away on this day last year. Reflecting on the events of a year ago, I was at a lung cancer advocacy seminar in Chicago this time last year when I got the call about my father. I knew one day the call about his passing would come, I wondered who would make the call... the call came from my mother. She told me he passed peacefully and at home. Upon hearing this news I was not as prepared as I thought I was despite all the life and death I had since over the past three years. After the initial shock I was relieved that he was at peace, he didn't have to suffer anymore, and he could now be with his heavenly father.
On this day I also strolled into the ICU where Bo was being treated before he got his double / double (second transplant). Keep fighting BJ and Family.
Today Raegan has a birthday so I celebrate, I also celebrate the home going of my father who passed away on this day last year. Reflecting on the events of a year ago, I was at a lung cancer advocacy seminar in Chicago this time last year when I got the call about my father. I knew one day the call about his passing would come, I wondered who would make the call... the call came from my mother. She told me he passed peacefully and at home. Upon hearing this news I was not as prepared as I thought I was despite all the life and death I had since over the past three years. After the initial shock I was relieved that he was at peace, he didn't have to suffer anymore, and he could now be with his heavenly father.
On this day I also strolled into the ICU where Bo was being treated before he got his double / double (second transplant). Keep fighting BJ and Family.
About updates hashtagged #cancerSC
On March 1, 2008, in a post entitled "An experiment with Twitter", I suggested that Twitter might be useful as an adjunct to this blog. The first set of "Updates sent to Twitter" was posted on March 7.
On May 8, 2009, I began adding the hashtag #cancerSC to updates micro-blogged on Twitter.
FriendFeed, described in a Wikipedia entry as a real-time feed aggregator, can be searched for this hashtag. As of today, the results of a search for #cancerSC yielded 15 items. Fourteen of the 15 items are ones that I have micro-blogged on Twitter. All of these 14 items have also been replicated in the weekly "Updates sent to Twitter" that have been posted to this blog.
A FriendFeed search provides a convenient way to review updates that have been hashtagged #cancerSC. Those who have joined FriendFeed can also post comments about individual updates. An advantage of FriendFeed is that, unlike Twitter, comments posted to FriendFeed need not be limited in length to 140 characters.
Short links to individual items can also be created on FriendFeed. These links permit individual items to be shared more widely. For example, the first update that was hashtagged #cancerSC (dated May 8, 2009) can be accessed via: http://ff.im/3pQbI.
On May 8, 2009, I began adding the hashtag #cancerSC to updates micro-blogged on Twitter.
FriendFeed, described in a Wikipedia entry as a real-time feed aggregator, can be searched for this hashtag. As of today, the results of a search for #cancerSC yielded 15 items. Fourteen of the 15 items are ones that I have micro-blogged on Twitter. All of these 14 items have also been replicated in the weekly "Updates sent to Twitter" that have been posted to this blog.
A FriendFeed search provides a convenient way to review updates that have been hashtagged #cancerSC. Those who have joined FriendFeed can also post comments about individual updates. An advantage of FriendFeed is that, unlike Twitter, comments posted to FriendFeed need not be limited in length to 140 characters.
Short links to individual items can also be created on FriendFeed. These links permit individual items to be shared more widely. For example, the first update that was hashtagged #cancerSC (dated May 8, 2009) can be accessed via: http://ff.im/3pQbI.
Friday, May 29, 2009
Rabbi Charisse Kranes - may her memory be a blessing
Today is the 20th anniversary of my dear friend Charisse's death. She died erev Shavu'ot 5749 (1989).
Charisse and I knew each other from when I was 12 and she was 14. We grew up in Young Judaea together, attending Cincinnati YJ club meetings, Central States regional conventions and activities, and Camp Tel Yehudah in Barryville NY. I followed in her footsteps and didn't attend the Young Judaea Year Course in Israel but instead went to the Machon lemadrichei chutz la'aretz (The Institute for Youth Leaders from Abroad).
We sang, we talked, we ran around and had fun. I loved brushing her long, thick brown hair. She carried a toy Jeep at conventions and took the wheels off during Shabbat so it couldn't go for a ride. It didn't matter that I was two years younger or she was two years older. And when we had finished college and Charisse was in rabbinic school, she would come to visit me in Columbus OH on her way to her part-time student pulpit in northern Ohio.
One summer Charisse had a student congregation in Traverse City MI. I drove up to Michigan's lower peninsula and found my way to Traverse City, home of local cherries. Charisse was staying in a tiny apartment located in the old, small synagogue. We had a most wonderful time together.
While writing her rabbinic thesis Charisse began to complain of stomach pain. Everyone thought it was due to the stress of graduating from rabbinic school and looking for a job. She found a position as assistant rabbi at Temple de Hirsch Sinai here in Seattle. (I was still living in Columbus.)
Only a few weeks after arriving in Seattle, Charisse was diagnosed with cervical cancer. The stomach pains turned out to be a tumor the size of a grapefruit. My great shame in life is that when she asked me to come to Seattle to be with her during a round of chemotherapy, I begged off, saying I couldn't afford it and couldn't take the time off from work. I only wish I had had the sensitivity to really hear her fear and sadness and been able to respond to them. But Charisse didn't hold a grudge.
Throughout the four years Charisse battled this cancer, she lived life to the fullest. She married her graduate school sweetie, Winston Pickett, while still in cancer treatment and was a beautiful bride. (We went to lunch the day before the wedding and in the ladies' room at the restaurant, she said, "I simply must scratch my head," pulled off her wig and scratched vigorously.) Her two wigs each had a name for when Charisse felt like being someone else. Charisse never lost her sense of humor about it all.
Some time later, she was living in California but had a high holiday pulpit in Hawaii. She called me one afternoon when I was preparing to lead services at Hillel, saying she couldn't remember how to sing Kol Nidre and would I sing it into the phone for her? Ironically, Charisse was the one who taught me to chant for the high holidays. I still have the recording she made for me of all her favorite nusach and tunes. If I ever figure out how to upload music to this blog I will share it.
Charisse was gifted with a most extraordinary voice. She was an inspiration for Bonia Shur, music director at Hebrew Union College in Cincinnati, and recorded for him. Some of my fondest memories are of just singing together at a Young Judaea meeting or at camp.
It's been twenty years since Charisse died, and when I said kaddish this morning for her yahrzeit, tears came so strongly to my eyes that I could barely read the words. I miss her still and wish we could have shared these past twenty years together -- my move to Seattle, marriage to Rik, frustration at infertility and cancer diagnoses.
Charisse and I were supposed to grow old together, still laughing and singing into our 80s. Now I have no life expectancy, having outlived all the statistics for women with metastatic breast cancer, and I don't know how many more birthdays I will celebrate. No matter how many or how few, they will be without Charisse -- and that's something I will never get used to.
Zichrona l'vracha -- may her memory be a blessing.
Charisse and I knew each other from when I was 12 and she was 14. We grew up in Young Judaea together, attending Cincinnati YJ club meetings, Central States regional conventions and activities, and Camp Tel Yehudah in Barryville NY. I followed in her footsteps and didn't attend the Young Judaea Year Course in Israel but instead went to the Machon lemadrichei chutz la'aretz (The Institute for Youth Leaders from Abroad).
We sang, we talked, we ran around and had fun. I loved brushing her long, thick brown hair. She carried a toy Jeep at conventions and took the wheels off during Shabbat so it couldn't go for a ride. It didn't matter that I was two years younger or she was two years older. And when we had finished college and Charisse was in rabbinic school, she would come to visit me in Columbus OH on her way to her part-time student pulpit in northern Ohio.
One summer Charisse had a student congregation in Traverse City MI. I drove up to Michigan's lower peninsula and found my way to Traverse City, home of local cherries. Charisse was staying in a tiny apartment located in the old, small synagogue. We had a most wonderful time together.
While writing her rabbinic thesis Charisse began to complain of stomach pain. Everyone thought it was due to the stress of graduating from rabbinic school and looking for a job. She found a position as assistant rabbi at Temple de Hirsch Sinai here in Seattle. (I was still living in Columbus.)
Only a few weeks after arriving in Seattle, Charisse was diagnosed with cervical cancer. The stomach pains turned out to be a tumor the size of a grapefruit. My great shame in life is that when she asked me to come to Seattle to be with her during a round of chemotherapy, I begged off, saying I couldn't afford it and couldn't take the time off from work. I only wish I had had the sensitivity to really hear her fear and sadness and been able to respond to them. But Charisse didn't hold a grudge.
Throughout the four years Charisse battled this cancer, she lived life to the fullest. She married her graduate school sweetie, Winston Pickett, while still in cancer treatment and was a beautiful bride. (We went to lunch the day before the wedding and in the ladies' room at the restaurant, she said, "I simply must scratch my head," pulled off her wig and scratched vigorously.) Her two wigs each had a name for when Charisse felt like being someone else. Charisse never lost her sense of humor about it all.
Some time later, she was living in California but had a high holiday pulpit in Hawaii. She called me one afternoon when I was preparing to lead services at Hillel, saying she couldn't remember how to sing Kol Nidre and would I sing it into the phone for her? Ironically, Charisse was the one who taught me to chant for the high holidays. I still have the recording she made for me of all her favorite nusach and tunes. If I ever figure out how to upload music to this blog I will share it.
Charisse was gifted with a most extraordinary voice. She was an inspiration for Bonia Shur, music director at Hebrew Union College in Cincinnati, and recorded for him. Some of my fondest memories are of just singing together at a Young Judaea meeting or at camp.
It's been twenty years since Charisse died, and when I said kaddish this morning for her yahrzeit, tears came so strongly to my eyes that I could barely read the words. I miss her still and wish we could have shared these past twenty years together -- my move to Seattle, marriage to Rik, frustration at infertility and cancer diagnoses.
Charisse and I were supposed to grow old together, still laughing and singing into our 80s. Now I have no life expectancy, having outlived all the statistics for women with metastatic breast cancer, and I don't know how many more birthdays I will celebrate. No matter how many or how few, they will be without Charisse -- and that's something I will never get used to.
Zichrona l'vracha -- may her memory be a blessing.
Does Cancer Make You Brave?
I don't know, but, in my case, it at least makes me more willing to take risks. Here are a few of my latest:
Fear of Fiction: When I was a child, I wrote fiction with abandon, but gave up in high school. Those really great writers managed to uninspire me. I could never come close to writing anything as great, so why even try? I've just broken the fiction fast with a submission to pal Paula Johnson's Rose City Sister's Flash Fiction site.
I Hate Irrational Numbers: I'll be reading this piece at the IWOSC (Independent Writers of Southern California) Reads Its Own event on June 7, 2 to 4 pm, at Barnes & Noble at The Grove, 189 The Grove Drive, Los Angeles.
Improv Improvement: My improv class will be showcasing its work at the Ice House Comedy Club in June. I'm brave enough to take the class and brave enough to participate in the show, but I'm not quite brave enough to invite my friends. (At this point, potential humiliation in front of people I'll never see again seems preferable.) But bear with me; I'm workin' on that.
Fear of Fiction: When I was a child, I wrote fiction with abandon, but gave up in high school. Those really great writers managed to uninspire me. I could never come close to writing anything as great, so why even try? I've just broken the fiction fast with a submission to pal Paula Johnson's Rose City Sister's Flash Fiction site.
I Hate Irrational Numbers: I'll be reading this piece at the IWOSC (Independent Writers of Southern California) Reads Its Own event on June 7, 2 to 4 pm, at Barnes & Noble at The Grove, 189 The Grove Drive, Los Angeles.
Improv Improvement: My improv class will be showcasing its work at the Ice House Comedy Club in June. I'm brave enough to take the class and brave enough to participate in the show, but I'm not quite brave enough to invite my friends. (At this point, potential humiliation in front of people I'll never see again seems preferable.) But bear with me; I'm workin' on that.
Gallery
This is Happily Married, (c) by the artist, Margo Rivera-Weiss, and is rendered in India ink and multiple layers of watercolor.
Thursday, May 28, 2009
Rest in Peace, Brownie
Last August, during a weak moment (inserted into a weak week and an ever weaker month), Cynthia asked if she could take care of her friend's chihuahua. "Is it temporary?" I asked weakly. "Yes, Mommy," she assured me.
The moment that Brownie moved in, I knew that I had made a fatal error. (You can read the whole story, "Help, There's a Chihuahua in My Kitchen" here.) Brownie didn't care that she had an eviction notice. She was here to stay.
Brownie was a pain. She yapped at guests, terrorized the cats and annoyed Betty. She threw me into frantic yelling fits of "SERENITY NOW!" But, somewhere along the line, I started to fall for the little terrorist. Just yesterday I spent more than an hour in our back yard watching Brownie and little Coco (yes, another dog) scamper about.
You can see where this is going, can't you? (I, on the other hand, am very slow to pick up on foreshadowing.)
When Cynthia woke up this morning and found that Brownie wasn't in her room, she looked outside and found her dead dog in our side yard. Brownie's neck was bleeding and her entrails exposed. We suspect a vicious raccoon.
All of us are sad and traumatized. And I never thought I'd say this, but I miss you, Brownie.
The moment that Brownie moved in, I knew that I had made a fatal error. (You can read the whole story, "Help, There's a Chihuahua in My Kitchen" here.) Brownie didn't care that she had an eviction notice. She was here to stay.
Brownie was a pain. She yapped at guests, terrorized the cats and annoyed Betty. She threw me into frantic yelling fits of "SERENITY NOW!" But, somewhere along the line, I started to fall for the little terrorist. Just yesterday I spent more than an hour in our back yard watching Brownie and little Coco (yes, another dog) scamper about.
You can see where this is going, can't you? (I, on the other hand, am very slow to pick up on foreshadowing.)
When Cynthia woke up this morning and found that Brownie wasn't in her room, she looked outside and found her dead dog in our side yard. Brownie's neck was bleeding and her entrails exposed. We suspect a vicious raccoon.
All of us are sad and traumatized. And I never thought I'd say this, but I miss you, Brownie.
class field / day
Field Day (run Raegan run), I was late for class due to field day (field day was scheduled a long time in advance before I knew I'd be pursing another graduate degree)
Catching up with a friend
About once a month or so Josh and I get together to commiserate over cancer. Our last get-together was on a beautifully sunny April day, a week before I was admitted to the hospital. How quickly one's situation can change. We walked his two pugs to a nearby park (well, one had to be carried part of the time) and just let our hair down about living with cancer. J has metastatic epithelioid sarcoma and blogs about it here.
Today we had a chance to catch up on our various medical tsuris form the past month or so. My hospital stay, his pneumonia, new drugs and their side effects -- the basic stuff of cancer catchups.
It always feel right to talk with someone else who has bad cancer. Sometimes when those of us who have mets participate in support groups with other people who have either finished their cancer treatment, or who are treating early stage cancer, we with mets can feel like their worst nightmares come true. So it feels easy and right to talk with someone who is walking the same walk, even with a different kind of cancer.
We sat in the sunny yard in the shade of our deck table and umbrella, ate cherries, drank seltzer and caught up on everything. It was the right way to spend an afternoon together.
Today we had a chance to catch up on our various medical tsuris form the past month or so. My hospital stay, his pneumonia, new drugs and their side effects -- the basic stuff of cancer catchups.
It always feel right to talk with someone else who has bad cancer. Sometimes when those of us who have mets participate in support groups with other people who have either finished their cancer treatment, or who are treating early stage cancer, we with mets can feel like their worst nightmares come true. So it feels easy and right to talk with someone who is walking the same walk, even with a different kind of cancer.
We sat in the sunny yard in the shade of our deck table and umbrella, ate cherries, drank seltzer and caught up on everything. It was the right way to spend an afternoon together.
NEW ARRIVALS/GLASSWARE
We have received some cool new glassware from:-Hitachino Nest
-Green Flash
-Chouffe
We still have glassware from:
-St. Bernardus
-Duchesse De Bourgogne
-Duvel
-Maredsous
-etc.
BEER
1. Pugsley' s Signature Barleywine 22oz
2. Pugsley's Signature Imperial Porter 22oz.
3. DEUS Brut Des Flandres is back!
4. Green Flash Le Freak is back!
5. Belzebuth Strong Ale
cheers,
dave
Wednesday, May 27, 2009
Good News/Not Me; The Other Guy
The good news is that a solvent-free, less toxic chemo drug can add seven months to the lives of women with metastatic breast cancer, compared to another drug that's more toxic and is solvent-based. A recent study shows that Abraxane is better than Taxotere. According to the press release, The study was supported by Abraxis BioScience, which manufactures Abraxane. [The lead researcher] is a member of the advisory boards for Abraxis and sanofi-aventis U.S., which manufactures Taxotere. He has received grant support from Abraxis and sanofi-aventis.
Which is a neat solution to the problem of researcher bias/payola. Get money from both pharmaceutical companies, so then no one can accuse you of selling influence. All things are equal here...except the study was supported by Abraxis, whose product came out ahead in the research. Caesar's wife and all that.
An independent radiology company helped assess the results.
A recent study of oncologists showed that the doctors said they themselves weren't influenced by gifts from pharmaceutical companies, but they thought that others might be.
Mortality Pokes Its Nose in Our Lives Yet Again
On left: X-ray showing a pacemaker
L had to wear a Holter monitor for a full day last week to test for arrhythmia. The cardiologist told him yesterday that he needs to get a pacemaker and defibrillator. The implant would be the size of a wallet, he said, in front of his shoulder, and after he's used to it, he can do anything he normally does, like play basketball (and ride the train, on which he's left his wallet; too bad that can't be implanted).
If he doesn't do this, he could drop dead at any time, and not necessarily when he's exercising. The monitor showed an "event" around bedtime, when he wasn't exerting himself. At his basketball game tonight a 43-year-old guy clutched his chest and slumped down. The guys called 911 and the ambulance came in a couple of minutes and took him away. That's the second heart attack they've had lately. A couple of years ago one guy left early, saying he didn't feel well, then went home and then to the hospital. My father used to say that he didn't play tennis any more because when his friends played, they dropped dead.
The good news is that this time L got hypoallergenic adhesive for the wires, so that he didn't have physical reminders of the test for weeks and weeks.
He's going for a second opinion in June, the same date that I might be having a fibroid sliced and diced out of my womb. The doctor is waiting for the delivery of a special slice-and-dicer that makes things easier because she can remove the fibroid in pieces. Which means I can't make it into a cufflink, a la Meyer Wolfsheim.
(Wolfsheim's on Myspace!.)
Beauteous toes
My feet have finally lost all the swelling and are practically back to normal, so I got an appointment at Spa Nordstrom for a pedicure. I wanted to go to a place where I'd really be pampered. Also, every year for the past many years, Spa Nordstrom has donated a full day of services by their employees to people with cancer. First it was through Swedish Cancer Institute, then through Gilda's Club. I have taken advantage of their genorosity many times over the years and thought if I was going to spend money for a pedicure, it might as well be to a place that supports people with cancer.
L got up early to drive me downtown for the 10 AM appointment. There was no traffic on the highway, and we found a parking spot on the street within two blocks of Nordstrom, so we were able to use my disabled parking permit and park for free.
The Spa was ready for us the moment we walked in. The lovely Dang washed my feet, massaged lotion into my legs and feet, trimmed my toenails (which were in sad shape and desperate for a trim), removed dead skin, pushed back cuticles, and pumiced up any rough spots. Then she applied a coat of tangerine orange polish and a top coat sealant. L drank tea throughout and watched me enjoy this sybaritic pleasure. We waited 15 minutes to be sure everything dried completely.
Then we wandered through Nordstrom looking at the sale items (no cool shoes, alas) and had a yummy lunch at the fourth floor Cafe.
After leaving downtown, we made a quick stop at the PCC for fruits and veggies for Shavuot, which starts tomorrow night. I bought Copper River salmon, chard to saute with garlic and raisins, and a piece of cheesecake to have for dessert. R can have baklava. Looking forward to cooking it!
L got up early to drive me downtown for the 10 AM appointment. There was no traffic on the highway, and we found a parking spot on the street within two blocks of Nordstrom, so we were able to use my disabled parking permit and park for free.
The Spa was ready for us the moment we walked in. The lovely Dang washed my feet, massaged lotion into my legs and feet, trimmed my toenails (which were in sad shape and desperate for a trim), removed dead skin, pushed back cuticles, and pumiced up any rough spots. Then she applied a coat of tangerine orange polish and a top coat sealant. L drank tea throughout and watched me enjoy this sybaritic pleasure. We waited 15 minutes to be sure everything dried completely.
Then we wandered through Nordstrom looking at the sale items (no cool shoes, alas) and had a yummy lunch at the fourth floor Cafe.
After leaving downtown, we made a quick stop at the PCC for fruits and veggies for Shavuot, which starts tomorrow night. I bought Copper River salmon, chard to saute with garlic and raisins, and a piece of cheesecake to have for dessert. R can have baklava. Looking forward to cooking it!
Wicked monkey cakewreck
We spent Memorial Day Weekend in Omaha. My sister-in-law got tickets to Wicked, and we had a girls' afternoon out. (Older girls -- WCK is a little too young for Wicked.) I loved the play, although I had some issues with the way it changed some Oz history. Yes, Oz is a real place with a real history, and if you disagree, I will drop a house on you.
We also went to the Omaha zoo, where we rode the new Skyfari ride and WCK picked out this beautiful mask from the gift shop. I love you, Dr. Zaius!
We also celebrated Jay's birthday. WCK has been begging to make Jay a Batman birthday cake for weeks. We found a little Batman candle holder at Target, and my mom bought some squeeze icing so we could write "Happy Birthday, Jay" (or something) on top of the cake. When we were all ready to get decorating, we realized that we didn't have the plastic writing tips necessary for the frosting, so it all came out in one big ooze. We did the best we could:
We also went to the Omaha zoo, where we rode the new Skyfari ride and WCK picked out this beautiful mask from the gift shop. I love you, Dr. Zaius!
We also celebrated Jay's birthday. WCK has been begging to make Jay a Batman birthday cake for weeks. We found a little Batman candle holder at Target, and my mom bought some squeeze icing so we could write "Happy Birthday, Jay" (or something) on top of the cake. When we were all ready to get decorating, we realized that we didn't have the plastic writing tips necessary for the frosting, so it all came out in one big ooze. We did the best we could:
My mom wrote "JAY" and WCK did the rest. I have to say, the red stuff looks kind of like The Joker's face, or maybe it's an abstract representation of the angst felt by the citizens of Gotham City. This is a cake that works on many levels.
Tuesday, May 26, 2009
Grilled Mustard Potato Salad
Grilled Mustard Potato Salad
3 Yukon Gold potatoes, coarsely cut
3 red potatoes, coarsely cut
1/4 cup olive oil
3 tablespoons white or cider vinegar OR lemon juice
1 tablespoon Dijon mustard
1/4 cup capers
1/2 teaspoon salt
1/4 teaspoon ground pepper
Cook potatoes in boiling salted water 10-15 minutes until just tender. Drain and place in a bowl.
In a small bowl, mix oil, vinegar or lemon juice, mustard, capers, salt and pepper until emulsified. Toss half the sauce over the warm potatoes.
Arrange potatoes in a single layer on aluminum foil or grill-safe pan and grill over high heat 7-9 minutes. Remove, toss with remaining sauce and serve warm.
3 Yukon Gold potatoes, coarsely cut
3 red potatoes, coarsely cut
1/4 cup olive oil
3 tablespoons white or cider vinegar OR lemon juice
1 tablespoon Dijon mustard
1/4 cup capers
1/2 teaspoon salt
1/4 teaspoon ground pepper
Cook potatoes in boiling salted water 10-15 minutes until just tender. Drain and place in a bowl.
In a small bowl, mix oil, vinegar or lemon juice, mustard, capers, salt and pepper until emulsified. Toss half the sauce over the warm potatoes.
Arrange potatoes in a single layer on aluminum foil or grill-safe pan and grill over high heat 7-9 minutes. Remove, toss with remaining sauce and serve warm.
Cream Sherry Cake
Cream Sherry Cake (as adapted from Bretts’s Neighbor Louie)
Cake:
1 3/4 cup sugar
1 cup olive oil
3 eggs
2 teaspoons vanilla extract
3 cups flour
1 1/2 teaspoons baking powder
1/2 teaspoon salt
1 cup cream sherry
OPTIONAL Glaze:
1 cup powdered sugar
1/4 cup orange juice
1/4 teaspoon vanilla extract
For cake: Preheat oven to 350 degrees. Grease and flour 12-cup bundt pan. Using electric mixer, beat sugar, olive oil, eggs and vanilla in large bowl to blend.
Mix flour, baking powder and salt In medium bowl. Stir dry ingredients alternately with sherry into sugar mixture, beginning and ending with dry ingredients.
Pour batter into prepared pan. Bake until tester inserted near center comes out clean, about 45 minutes. Cool cake in pan 10 minutes.
OPTIONAL: Prepare glaze: Whisk all ingredients in small bowl to blend.
Turn out cake onto rack. Spoon glaze over warm cake. Cool cake completely. Slice and serve.
Cake:
1 3/4 cup sugar
1 cup olive oil
3 eggs
2 teaspoons vanilla extract
3 cups flour
1 1/2 teaspoons baking powder
1/2 teaspoon salt
1 cup cream sherry
OPTIONAL Glaze:
1 cup powdered sugar
1/4 cup orange juice
1/4 teaspoon vanilla extract
For cake: Preheat oven to 350 degrees. Grease and flour 12-cup bundt pan. Using electric mixer, beat sugar, olive oil, eggs and vanilla in large bowl to blend.
Mix flour, baking powder and salt In medium bowl. Stir dry ingredients alternately with sherry into sugar mixture, beginning and ending with dry ingredients.
Pour batter into prepared pan. Bake until tester inserted near center comes out clean, about 45 minutes. Cool cake in pan 10 minutes.
OPTIONAL: Prepare glaze: Whisk all ingredients in small bowl to blend.
Turn out cake onto rack. Spoon glaze over warm cake. Cool cake completely. Slice and serve.
A quiet day after Folklife
After the frenzied joy of my afternoon and evening at Folklife, I really needed some down time. Monday's weather was perfect -- sunny and warm all day long. We went out for a fabulous breakfast at the The Breakfast Club on Lake City Way, a diner serving some of the best hollandaise sauce around. Rik and I both had eggs florentine (poached eggs over a bed of spinach on a toasted english muffin, topped with that amazing lemony hollandaise sauce, and served with yummy breakfast potatoes). Although Rik didn't have the hollandaise - he asked for it on the side and I ate most of it. Plus orange juice and coffee.
That scrumptious and filling breakfast lasted for hours. Rik mowed the lawn while I sat on my lounge chair in the sun and read a book. Then I took a nap in the hammock. S and Y arrived at the end of the afternoon and we had a quiet visit together. S worked on altering the Afghani door hanging so it would fit the wider door. She excels at this kind of project.
Then Rik and I went to friends for an impromptu barbecue. P hadn't cooked all weekend, so he was feeling creative and went on a grilling spree: grilled mustard potato salad (a recipe I got from W and passed along to D & P), turkey thighs, Korean short ribs, Copper River salmon, and served up his usual amazing green salad. I ate a full plate of food for the first time since being discharged from the hospital. I think my appetite is now normal and I have to begin watching food quantities or I will begin to gain more weight than I want.
I had baked a parve cream sherry cake for dessert -- the group ate all but three slices! We served the cake with leftover frozen berries from our harvest last summer and some vanilla ice cream. Delish!
That scrumptious and filling breakfast lasted for hours. Rik mowed the lawn while I sat on my lounge chair in the sun and read a book. Then I took a nap in the hammock. S and Y arrived at the end of the afternoon and we had a quiet visit together. S worked on altering the Afghani door hanging so it would fit the wider door. She excels at this kind of project.
Then Rik and I went to friends for an impromptu barbecue. P hadn't cooked all weekend, so he was feeling creative and went on a grilling spree: grilled mustard potato salad (a recipe I got from W and passed along to D & P), turkey thighs, Korean short ribs, Copper River salmon, and served up his usual amazing green salad. I ate a full plate of food for the first time since being discharged from the hospital. I think my appetite is now normal and I have to begin watching food quantities or I will begin to gain more weight than I want.
I had baked a parve cream sherry cake for dessert -- the group ate all but three slices! We served the cake with leftover frozen berries from our harvest last summer and some vanilla ice cream. Delish!
Mutts for Marrow and Pasadena Relay for Life
Bill and I and the "Mutts for Marrow" team for the Pasadena Relay for Life will be at the Pasadena City College Stadium from Saturday, May 30, until Sunday morning.
We'd still love to have our local friends join us for all or part of the day. Our team has raised enough money so that we can "redistribute" the contributions to other team members. That means that you can get a free T-shirt, free breakfast-lunch-dinner and an endless supply of Starbuck's coffee, even if you haven't raised a dime. All you need to do is click here or on the "Relay for Life" logo to register for our team. (Pick the FREE team member option.)
We'll also be signing up potential donors for the National Bone Marrow Registry. If you know of any minorities or "mutts" between the ages of 18 and 60 who aren't on the registry, please encourage them to come by the Mutts for Marrow tent on Saturday.
Here's the schedule of events for Saturday:
8:00 am Registration and Breakfast
9:00 am Opening Ceremony
9:45 am Survivor Lap
10:00 am Caregiver Lap
10:15 am Parade of Teams
Noon Balloon Toss
12:30 pm Lunch
1:00 pm Frozen Tee Shirt Contest
5:00 pm Bra Contest
6:00 pm Dinner
AMAZING RACE
8:00 pm Miss Relay Contest
9:00 pm Luminarias Ceremony
9:30 pm Remember Walk
I haven't pushed hard for donations this time because so many of you were so generous for the Leukemia and Lymphoma Society's walk in September. But, if you'd like to donate to the American Cancer Society on behalf of the team (we're just shy of our $2,500 goal) or me (I'm $50 shy of my modest goal) or any team member who hasn't yet raised money, we'd all be appreciative. Just click here or on the "Relay for Life" logo on the left side of this blog.
Hope to see you on Saturday!
We'd still love to have our local friends join us for all or part of the day. Our team has raised enough money so that we can "redistribute" the contributions to other team members. That means that you can get a free T-shirt, free breakfast-lunch-dinner and an endless supply of Starbuck's coffee, even if you haven't raised a dime. All you need to do is click here or on the "Relay for Life" logo to register for our team. (Pick the FREE team member option.)
We'll also be signing up potential donors for the National Bone Marrow Registry. If you know of any minorities or "mutts" between the ages of 18 and 60 who aren't on the registry, please encourage them to come by the Mutts for Marrow tent on Saturday.
Here's the schedule of events for Saturday:
8:00 am Registration and Breakfast
9:00 am Opening Ceremony
9:45 am Survivor Lap
10:00 am Caregiver Lap
10:15 am Parade of Teams
Noon Balloon Toss
12:30 pm Lunch
1:00 pm Frozen Tee Shirt Contest
5:00 pm Bra Contest
6:00 pm Dinner
AMAZING RACE
8:00 pm Miss Relay Contest
9:00 pm Luminarias Ceremony
9:30 pm Remember Walk
I haven't pushed hard for donations this time because so many of you were so generous for the Leukemia and Lymphoma Society's walk in September. But, if you'd like to donate to the American Cancer Society on behalf of the team (we're just shy of our $2,500 goal) or me (I'm $50 shy of my modest goal) or any team member who hasn't yet raised money, we'd all be appreciative. Just click here or on the "Relay for Life" logo on the left side of this blog.
Hope to see you on Saturday!
Monday, May 25, 2009
Phenomenal Folklife
I spent the most marvelous five hours at the Northwest Folklife Festival yesterday.
We arrived about an hour before my performance call so that I could walk the grounds of the Seattle Center and look for the merchant who sells the Afghani door decorations. I thought we needed one more for our dining room ( we have two already, but there are three doorways in the dining room). Luckily, Gazdi was in the same location they've had for the past few years, and even more fortunately, they had three of these items for me to look at. None was quite wide enough for that third door, which used to be a door to the back porch before someone enclosed it to add space to the dining room. But the owner made a terrific suggestion. Since they are very long, why not cut some of the length to add to the width? I am sure I will spend part of the day sewing today. Such an excellent suggestion to make it fit in my house!
Then I needed a snack. No way was the leftover mac and cheese I ate at 4 PM going to last until 7 PM, after Dunava's gig. So I enjoyed an Indian spiced chicken kabob. Five deliciously moist chicken pieces on a skewer with some cabbage too. It was the perfect snack to give me energy through Dunava's set.
I left Rik and our friends to enjoy wandering the festival and listen to some good music. Dunava was meeting to rehearse before our set. We all went up to the fourth floor of the Center House where there were fewer people wandering about. (I insisted we take the elevator. No way was I walking up four flights of stairs!) I sat, the rest of the choir stood, and we reviewed one verse from each song. Then it was back downstairs to the Center House Theatre for our gig.
We had a few minutes to sound check. Luckily the theatre was empty and so we could do so without an audience. We went backstage at 6:20 when people began to enter the house. At 6:30 the emcee spent a few minutes talking up Folklife and then announced Dunava.
It was a standing-room only, full house of fans and friends. We had prepared eleven songs but only sang ten. The emcee gave us the old vaudeville cut off. It's too bad that he spoke for three minutes at the beginning and stole time from our set.
But we received a loud standing ovation from the audience, who were amazingly enthusiastic about our singing. I grabbed some business cards and with Dina, handed them to people so they would join our mailing list and then know about our summer CD release party.
After all that musical high, I was hungry again. We walked back to the main entry to the Seattle Center for a fabulous crepe with chicken and artichokes. (Rik had his with strawberries, Y had the vegetarian). We found a wall to sit on and enjoyed our dinner immensely.
Then it was back across the Seattle Center grounds to the Balkan dance, where I actually danced two dances!
I am so thankful to my doctors, my own body, and to God for giving me back enough health that I could enjoy Folklife to this extent. I can hardly believe that a little more than two weeks ago I was in the hospital, and last night I was singing and dancing, the things that bring me the most pleasure in life.
It was an amazing day. I came home totally exhausted, could hardly wait to get into my pajamas, and fell soundly asleep at 10 PM. What a great day!
We arrived about an hour before my performance call so that I could walk the grounds of the Seattle Center and look for the merchant who sells the Afghani door decorations. I thought we needed one more for our dining room ( we have two already, but there are three doorways in the dining room). Luckily, Gazdi was in the same location they've had for the past few years, and even more fortunately, they had three of these items for me to look at. None was quite wide enough for that third door, which used to be a door to the back porch before someone enclosed it to add space to the dining room. But the owner made a terrific suggestion. Since they are very long, why not cut some of the length to add to the width? I am sure I will spend part of the day sewing today. Such an excellent suggestion to make it fit in my house!Then I needed a snack. No way was the leftover mac and cheese I ate at 4 PM going to last until 7 PM, after Dunava's gig. So I enjoyed an Indian spiced chicken kabob. Five deliciously moist chicken pieces on a skewer with some cabbage too. It was the perfect snack to give me energy through Dunava's set.
I left Rik and our friends to enjoy wandering the festival and listen to some good music. Dunava was meeting to rehearse before our set. We all went up to the fourth floor of the Center House where there were fewer people wandering about. (I insisted we take the elevator. No way was I walking up four flights of stairs!) I sat, the rest of the choir stood, and we reviewed one verse from each song. Then it was back downstairs to the Center House Theatre for our gig.
We had a few minutes to sound check. Luckily the theatre was empty and so we could do so without an audience. We went backstage at 6:20 when people began to enter the house. At 6:30 the emcee spent a few minutes talking up Folklife and then announced Dunava.
It was a standing-room only, full house of fans and friends. We had prepared eleven songs but only sang ten. The emcee gave us the old vaudeville cut off. It's too bad that he spoke for three minutes at the beginning and stole time from our set.
But we received a loud standing ovation from the audience, who were amazingly enthusiastic about our singing. I grabbed some business cards and with Dina, handed them to people so they would join our mailing list and then know about our summer CD release party.
After all that musical high, I was hungry again. We walked back to the main entry to the Seattle Center for a fabulous crepe with chicken and artichokes. (Rik had his with strawberries, Y had the vegetarian). We found a wall to sit on and enjoyed our dinner immensely.
Then it was back across the Seattle Center grounds to the Balkan dance, where I actually danced two dances!I am so thankful to my doctors, my own body, and to God for giving me back enough health that I could enjoy Folklife to this extent. I can hardly believe that a little more than two weeks ago I was in the hospital, and last night I was singing and dancing, the things that bring me the most pleasure in life.
It was an amazing day. I came home totally exhausted, could hardly wait to get into my pajamas, and fell soundly asleep at 10 PM. What a great day!
Sunday, May 24, 2009
Updates sent to Twitter, May 17-23
Updates about CSC sent to Twitter during May 17-23:
Migration rules: tumours are conglomerates of self-metastases [May 23]: http://dx.doi.org/10.1038/sj.bjc.6605071
[PubMed Citation].
Interferon induces the terminal differentiation of glioma-initiating cells (GICs) [May 23]: http://www.ncbi.nlm.nih.gov/pubmed/19457609
Pro-Cure and Adjuvantix to develop vaccine targeting cancer stem cells [May 23]: http://is.gd/C6Nu
http://www.webcitation.org/5gzbcvRe8
About a Pten knockout mouse prostate cancer model (OA) [May 23]: http://dx.doi.org/10.1371/journal.pone.0005662
[Full text is publicly accessible (via Libre OA)].
Aldehyde Dehydrogenase 1 Is a Putative Marker for Cancer Stem Cells in Head and Neck Squamous Cancer [May 21]: http://bit.ly/wUjsj
[PubMed Citation].
Migration rules: tumours are conglomerates of self-metastases [May 23]: http://dx.doi.org/10.1038/sj.bjc.6605071
[PubMed Citation].
Interferon induces the terminal differentiation of glioma-initiating cells (GICs) [May 23]: http://www.ncbi.nlm.nih.gov/pubmed/19457609
Pro-Cure and Adjuvantix to develop vaccine targeting cancer stem cells [May 23]: http://is.gd/C6Nu
http://www.webcitation.org/5gzbcvRe8
About a Pten knockout mouse prostate cancer model (OA) [May 23]: http://dx.doi.org/10.1371/journal.pone.0005662
[Full text is publicly accessible (via Libre OA)].
Aldehyde Dehydrogenase 1 Is a Putative Marker for Cancer Stem Cells in Head and Neck Squamous Cancer [May 21]: http://bit.ly/wUjsj
[PubMed Citation].
Numbers, Odds, Randomness and Uncertainty
I love numbers.
So how do we deal with the uncertainties of illness or life? Carl at A Pastor's Cancer Diary does a great job of describing the frustration (and eventual acceptance) of living with uncertainty, what Dr. Seuss called "the most useless place. The waiting place . . . "
For Carl and others, the operative word of "living with uncertainty" is living. And you don't need a spreadsheet for that.
(Leonard Mlodinow will be at Vroman's Bookstore in Pasadena on June 11. I'll be there.
5-25 Update: Oops. Mlodinow was at Vroman's in 2008. I'm only a year late. He's a local CalTech guy, so I hope I have another opportunity to hear him in person.)
Those words might come as a surprise from a writer, but, for as long as I can remember, I’ve been smitten with numbers as much as words. Numbers are comforting. They explain. They form patterns. They offer proof. They tell stories. They can predict the ending for those stories.
Or so I thought.
Turns out that my elaborate spreadsheets, line charts and data during treatment did little in the way of comforting, explaining, proving or predicting. At best, the numbers gave me the allusion of control.
In spite of my disillusionment with digits, I'm still fascinated by the science of predictability and the age-old question, "What are the odds?"
I was especially intrigued with this NY Times opinion piece by "the editors" and Leonard Mlodinow, author of “The Drunkard’s Walk: How Randomness Rules Our Lives."
The author's answer to this email question struck a chord:
I'd never heard the uncertainty/unhappiness theory, but I can certainly relate. For me, the hardest stretches during diagnosis, treatment and remission have been the pockets of uncertainty. And Mlondinow gets it right in his response.An earlier post by the psychologist Daniel Gilbert makes the argument that uncertainty — not knowing what misfortune will come — makes people more unhappy than misfortune itself. Do you find that to be true?
It does seem to be true of my own psychology. Also, I find that what’s most important, whatever happens, is how you deal with it. And once something bad actually happens, you can start that process, and bad can eventually even turn into good.
So how do we deal with the uncertainties of illness or life? Carl at A Pastor's Cancer Diary does a great job of describing the frustration (and eventual acceptance) of living with uncertainty, what Dr. Seuss called "the most useless place. The waiting place . . . "
For Carl and others, the operative word of "living with uncertainty" is living. And you don't need a spreadsheet for that.
(Leonard Mlodinow will be at Vroman's Bookstore in Pasadena on June 11. I'll be there.
5-25 Update: Oops. Mlodinow was at Vroman's in 2008. I'm only a year late. He's a local CalTech guy, so I hope I have another opportunity to hear him in person.)
Saturday, May 23, 2009
Scanxiety
I found this article from the Philadelphia Inquirer "Beset with 'scanxiety', cancer patients feel a psychic pain" . I've come to learn within the cancer community a new term, “scanxiety". All of us with appendix cancer have experienced it.
The article talks about “these tests that spy on cancer -- telling patients when the disease is dormant and when it's growing -- give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences -- the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.
But in the parallel universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and "new normals." Every six weeks or three months or year, people find out whether they've hit another fork in the cancer-treatment road. Whether they're closer to a cure. Or death.”
Cancer survivors really do live in a "parallel universe", and our lives do involve life and death fears. I think now of days past when I was nervous giving a speech, taking a test, flying on a plane, starting a new job or losing a job in my "old normal" life. Cancer testing makes all of those fears trivial.
Cancer testing is essential, because the earlier we detect a recurrence the better chance we have of fighting it; but we all know our odds of survival decrease with recurrence. And we all know the potential for a test result to signify the end of our lives. I've always kind of felt waiting for a CT result was like waiting for a sentence from a court of law. Someone else will decide the course of our life based on the test results, and every test has the potential to be a death sentence.
I recently was having some pelvic discomfort (right side where my primary tumor had been, no less) at 8 years out. But I minimized it, as at 8 years out I was probably done, maybe even beyond remission, maybe even "cured". Then a signet ring appendix cancer patient's friend wrote me. Her friend was an eight year cancer-free signet ring survivor, but the disease was back, back in a big way. She'd had a massive surgery to attempt to remove the new tumors. So, I was back feeling vulnerable again. I had decided to quit CT scans and the vulnerability that comes with them, but went for another one after receiving that letter.
I’ve lost count of how many CT scans I’ve had.
It never gets easier.
I left my 12 hour midnight shift after my last CT to stop by the hospital medical records department for the scan report. I was in the medical records department in the basement; heart pounding, hands shaking waiting, waiting for my reports. It never gets easier. I heard the reports being printed. I asked, then, with trembling hands, to see the scan results. Then they told me I needed first to pay 25cents per page. I only had a few nickels and pennies in my purse, no green money, and a debit card. They didn't accept debit cards. I was trying to decide which single page I could afford....maybe just the end page with the "impressions". But they weren't going to give me the report until I paid in full ($1.25).
I told them I was a cancer patient and the words on those papers would let me know if my cancer had come back, if I could plan my future. They were important to me. I was almost in tears (heart still pounding, hands shaking). They finally told their staff to give me the report for what pennies and nickels I had, they would be enough.
There were no masses, no tumors noted on the scan. Whew.
We need to develop tools to deal with scanxiety. Distractions work well, I'm sure to schedule long shifts at work while waiting for my scan results (12-16 hours). I keep amazingly busy after a CT scan, I find that helps a lot. I keep people around me; do things that require my brain to think of something else. An absorbing novel is good too.
I’m not good at waiting anxiously for a week or two for a doctor’s appointment to find out the results, so I get my own results from the hospital medical records department as soon as I know they are available (usually within 48 hours). You can do that…they are yours. You just sign a release.
I've learned to schedule CTs on Fridays and to go pick up the results at the hospital medical records office on Mondays. Then I don't worry about hang up phone calls as on weekends as I know offices are closed and results still being typed up, so I don't have to worry that someone hung up as they couldn't leave the bad news on the answering machine as it would violate HIPPA law.
Of course, as one patient in the article said…”Ativan is wonderful, at least you can sleep”.
Maybe one day, as they have done locally for breast cancer patients at a hospital near me, they will have CT scan reports available at the time of testing. We'd still have scanxiety, but only for minutes instead of days and weeks. A breast cancer patient told me once about the terrible anxiety she felt during the 10-15 minute wait for her mammogram result. All I could think of was what I would give for ONLY a ten minute wait.
The article talks about “these tests that spy on cancer -- telling patients when the disease is dormant and when it's growing -- give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences -- the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.
But in the parallel universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and "new normals." Every six weeks or three months or year, people find out whether they've hit another fork in the cancer-treatment road. Whether they're closer to a cure. Or death.”
Cancer survivors really do live in a "parallel universe", and our lives do involve life and death fears. I think now of days past when I was nervous giving a speech, taking a test, flying on a plane, starting a new job or losing a job in my "old normal" life. Cancer testing makes all of those fears trivial.
Cancer testing is essential, because the earlier we detect a recurrence the better chance we have of fighting it; but we all know our odds of survival decrease with recurrence. And we all know the potential for a test result to signify the end of our lives. I've always kind of felt waiting for a CT result was like waiting for a sentence from a court of law. Someone else will decide the course of our life based on the test results, and every test has the potential to be a death sentence.
I recently was having some pelvic discomfort (right side where my primary tumor had been, no less) at 8 years out. But I minimized it, as at 8 years out I was probably done, maybe even beyond remission, maybe even "cured". Then a signet ring appendix cancer patient's friend wrote me. Her friend was an eight year cancer-free signet ring survivor, but the disease was back, back in a big way. She'd had a massive surgery to attempt to remove the new tumors. So, I was back feeling vulnerable again. I had decided to quit CT scans and the vulnerability that comes with them, but went for another one after receiving that letter.
I’ve lost count of how many CT scans I’ve had.
It never gets easier.
I left my 12 hour midnight shift after my last CT to stop by the hospital medical records department for the scan report. I was in the medical records department in the basement; heart pounding, hands shaking waiting, waiting for my reports. It never gets easier. I heard the reports being printed. I asked, then, with trembling hands, to see the scan results. Then they told me I needed first to pay 25cents per page. I only had a few nickels and pennies in my purse, no green money, and a debit card. They didn't accept debit cards. I was trying to decide which single page I could afford....maybe just the end page with the "impressions". But they weren't going to give me the report until I paid in full ($1.25).
I told them I was a cancer patient and the words on those papers would let me know if my cancer had come back, if I could plan my future. They were important to me. I was almost in tears (heart still pounding, hands shaking). They finally told their staff to give me the report for what pennies and nickels I had, they would be enough.
There were no masses, no tumors noted on the scan. Whew.
We need to develop tools to deal with scanxiety. Distractions work well, I'm sure to schedule long shifts at work while waiting for my scan results (12-16 hours). I keep amazingly busy after a CT scan, I find that helps a lot. I keep people around me; do things that require my brain to think of something else. An absorbing novel is good too.
I’m not good at waiting anxiously for a week or two for a doctor’s appointment to find out the results, so I get my own results from the hospital medical records department as soon as I know they are available (usually within 48 hours). You can do that…they are yours. You just sign a release.
I've learned to schedule CTs on Fridays and to go pick up the results at the hospital medical records office on Mondays. Then I don't worry about hang up phone calls as on weekends as I know offices are closed and results still being typed up, so I don't have to worry that someone hung up as they couldn't leave the bad news on the answering machine as it would violate HIPPA law.
Of course, as one patient in the article said…”Ativan is wonderful, at least you can sleep”.
Maybe one day, as they have done locally for breast cancer patients at a hospital near me, they will have CT scan reports available at the time of testing. We'd still have scanxiety, but only for minutes instead of days and weeks. A breast cancer patient told me once about the terrible anxiety she felt during the 10-15 minute wait for her mammogram result. All I could think of was what I would give for ONLY a ten minute wait.
Beauty and the Blight
My garden is a little microcosm of life. There's lots of beauty, but there's also plenty of weeds, crab grass and a few eyesores. It all depends on where the eye chooses to rest.
And sometimes it's about covering up the blight and creating something beautiful in the process. Read more about it at Open Mouth, Insert Fork.
And sometimes it's about covering up the blight and creating something beautiful in the process. Read more about it at Open Mouth, Insert Fork.
New bathroom
Yes, we hope to redo our bathroom in July. This is the fourth time I have been hospitalized in ten years and had to have help each time around the bathroom. Can't step over the bathtub unassisted to get into the shower. Must have a booster chair on the toilet seat. Needed a bath bench because I couldn't stand up in the shower. It was endlessly frustrating for each recovery!
After ten years of trying to make do in older bathrooms that are not set up for disabled people, we are finally doing something about it. We have interviewed contractors, gotten a sketch from T our friend who is an architect, seen bids, scaled back our plans to something we could afford, had T draw a new sketch, and are finally ready to go.
We hope to receive a revised bid in the right amount from the contractor we like best in the next week.
Meanwhile, our concept has three priorities -
1) Move the washer and dryer upstairs from the basement
2) Put in a heated tiled bathroom floor
3) Replace the bathtub with a shower that has a bench
(We originally wanted to put in a small powder room but it was much more than we could afford.)
The revised plan uses our current door but puts it into a pocket so that it slides back and forth instead of opening into the bathroom.
On the left in the space currently used by the linen closet will be the stackable small washer and dryer. Across from it will be a wall-mounted cabinet with storage for laundry stuff and a pull-down rack to dry delicate garments. (We'll have to redo the bedroom closet too to make space for the linens which will no longer be able to live in the linen closet.)
Just beyond the washer and dryer will be a small vanity with sink. I am looking at some very cool glass and ceramic sinks that come in colors -- thinking bright cobalt blue right now. The vanity will have three drawers on the right side extending down to the floor and one cupboard door for more storage below the sink. On the left, climbing up to the ceiling, will be a tall narrow cabinet that either pulls out (like a pantry) or with a door that opens.
I found these amazing drawer pulls. There will be a medicine chest, maybe reusing one of the mirrors that is still in good shape. We will have lighting around the mirror too, perhaps vertical sconces.
One thing we have plenty of is height. The ceiling is over ten feet. So we want to use that resource. The contractor talked about putting in a soffit - a fake trim on the ceiling - with lighting above it for general lighting.
Across from the vanity and sink will be the toilet, facing parallel to the wall (not perpendicular, the way it is now). It will be a chair height toilet, low flow or dual flush toilet, so that everyone can sit on it comfortably. I have the contractor looking into the fancy Japanese-style toilets by Toto, just in case they turn out to be affordable. These are the amazing toilets that have heated seats, blow warm water and air, and play music. I saw them in Japan and fell in love immediately.
At the far end will be the shower, a tiled enclosure with a rainfall shower head at one end and a bench at the other end with a handheld shower head so that when I can't stand I will still be able to take a shower unaided. We found some beautiful border tiles from Jerusalem Pottery in Israel and can't wait to order them.
The colors will be soft purple, cobalt blue and a soft butter yellow. The tiled floor will reflect all the colors, while the shower will be mostly white with the accent tiles in blue and yellow. The vanity might be a warm light colored wood with that cobalt sink, the upper cabinet to match.
I tried to upload a pdf of the architect's sketch but couldn't get it to work. So you will have to imagine with me and I will post photos of things as we decide to use them.
After ten years of trying to make do in older bathrooms that are not set up for disabled people, we are finally doing something about it. We have interviewed contractors, gotten a sketch from T our friend who is an architect, seen bids, scaled back our plans to something we could afford, had T draw a new sketch, and are finally ready to go.
We hope to receive a revised bid in the right amount from the contractor we like best in the next week.
Meanwhile, our concept has three priorities -
1) Move the washer and dryer upstairs from the basement
2) Put in a heated tiled bathroom floor
3) Replace the bathtub with a shower that has a bench
(We originally wanted to put in a small powder room but it was much more than we could afford.)
The revised plan uses our current door but puts it into a pocket so that it slides back and forth instead of opening into the bathroom.
On the left in the space currently used by the linen closet will be the stackable small washer and dryer. Across from it will be a wall-mounted cabinet with storage for laundry stuff and a pull-down rack to dry delicate garments. (We'll have to redo the bedroom closet too to make space for the linens which will no longer be able to live in the linen closet.)
Just beyond the washer and dryer will be a small vanity with sink. I am looking at some very cool glass and ceramic sinks that come in colors -- thinking bright cobalt blue right now. The vanity will have three drawers on the right side extending down to the floor and one cupboard door for more storage below the sink. On the left, climbing up to the ceiling, will be a tall narrow cabinet that either pulls out (like a pantry) or with a door that opens. 
I found these amazing drawer pulls. There will be a medicine chest, maybe reusing one of the mirrors that is still in good shape. We will have lighting around the mirror too, perhaps vertical sconces.
One thing we have plenty of is height. The ceiling is over ten feet. So we want to use that resource. The contractor talked about putting in a soffit - a fake trim on the ceiling - with lighting above it for general lighting.
Across from the vanity and sink will be the toilet, facing parallel to the wall (not perpendicular, the way it is now). It will be a chair height toilet, low flow or dual flush toilet, so that everyone can sit on it comfortably. I have the contractor looking into the fancy Japanese-style toilets by Toto, just in case they turn out to be affordable. These are the amazing toilets that have heated seats, blow warm water and air, and play music. I saw them in Japan and fell in love immediately.
At the far end will be the shower, a tiled enclosure with a rainfall shower head at one end and a bench at the other end with a handheld shower head so that when I can't stand I will still be able to take a shower unaided. We found some beautiful border tiles from Jerusalem Pottery in Israel and can't wait to order them.
The colors will be soft purple, cobalt blue and a soft butter yellow. The tiled floor will reflect all the colors, while the shower will be mostly white with the accent tiles in blue and yellow. The vanity might be a warm light colored wood with that cobalt sink, the upper cabinet to match.
I tried to upload a pdf of the architect's sketch but couldn't get it to work. So you will have to imagine with me and I will post photos of things as we decide to use them.
A lovely day - might have done too much
I felt so good on Friday morning that I baked Rik a batch pf snickerdoodle cookies, readall the paper, did the crossword, took a short nap and puttered around the house until 11:30 when A picked me up for an afternoon of bathroom fixture browsing.
First we had a delicious lunch at Gorgeous George's restaurant, owned by an Israeli Christian Arab. His food was remarkably tasty! I had lamb gyro meat over rice; A had kofta kabobs (seasoned ground beef) with rice. We both shared a phenomenal salad tossed with George's own home made salad dressing. All in all, a lunch worth lingering over!
Then we drove down Stone Way to check out a couple of design/fixture places. I found some of the items I'd seen online and it helped to see them in the flesh, so to speak. Plus there were a couple of new ideas that came our way.
A dropped me off and then W came over to take me to help her look for a refrigerator. I've replaced all our appliances in the past few years and I learned a lot about shopping for these big ticket items.
W and I went to Almvig's, which has the best customer service in town. We got some tips about why not to buy LG (they have the highest service call numbers), how to make room for a taller fridge under a cabinet (if the cabinet is stand-alone, not attached to others, it can be removed and made shorter to allow for the now standard 70" fridges to fit in the space below the cabinet). W didn't want to buy a GE model, which left us looking at Kitchenaid, Whirlpool and Fischer & Paykel.
I am sure W and G will find the fridge they need with minimal fuss, since they took my advice and measured their available space BEFORE going shopping.
I then crashed for an hour and slept hard. We went to R and L's for Shabbat dinner. I was still sleepy from my nap, but a cup of mint tea with honey soon woke me up. L prepared a delicious Shabbat dinner of her special salads (no one makes salads like L), salmon, couscous with dried fruit and nuts, asparagus and fruit cobbler for dessert. I ate as much as I could - which wasn't much -- had some salad, a teaspoon of couscous, a small piece of salmon and one asparagus spear. I did have some cobbler after dinner.
It was a lovely day but I just might have done a smidge too much. I slept well after my second dose of Megace and only awoke twice in the night to pee. I actually slept in until 7 AM!
First we had a delicious lunch at Gorgeous George's restaurant, owned by an Israeli Christian Arab. His food was remarkably tasty! I had lamb gyro meat over rice; A had kofta kabobs (seasoned ground beef) with rice. We both shared a phenomenal salad tossed with George's own home made salad dressing. All in all, a lunch worth lingering over!
Then we drove down Stone Way to check out a couple of design/fixture places. I found some of the items I'd seen online and it helped to see them in the flesh, so to speak. Plus there were a couple of new ideas that came our way.
A dropped me off and then W came over to take me to help her look for a refrigerator. I've replaced all our appliances in the past few years and I learned a lot about shopping for these big ticket items.
W and I went to Almvig's, which has the best customer service in town. We got some tips about why not to buy LG (they have the highest service call numbers), how to make room for a taller fridge under a cabinet (if the cabinet is stand-alone, not attached to others, it can be removed and made shorter to allow for the now standard 70" fridges to fit in the space below the cabinet). W didn't want to buy a GE model, which left us looking at Kitchenaid, Whirlpool and Fischer & Paykel.
I am sure W and G will find the fridge they need with minimal fuss, since they took my advice and measured their available space BEFORE going shopping.
I then crashed for an hour and slept hard. We went to R and L's for Shabbat dinner. I was still sleepy from my nap, but a cup of mint tea with honey soon woke me up. L prepared a delicious Shabbat dinner of her special salads (no one makes salads like L), salmon, couscous with dried fruit and nuts, asparagus and fruit cobbler for dessert. I ate as much as I could - which wasn't much -- had some salad, a teaspoon of couscous, a small piece of salmon and one asparagus spear. I did have some cobbler after dinner.
It was a lovely day but I just might have done a smidge too much. I slept well after my second dose of Megace and only awoke twice in the night to pee. I actually slept in until 7 AM!
Friday, May 22, 2009
float on
some pictures of the celebratory balloon ride:
Now back to real life, back to solid ground.
I've been trying to handle all of my post-cancer emotions like an adult, i.e., not bitch about anything and keep the pain to myself. Like all of that hot air held in the balloon, I'm either going to violently combust or gently float on. We'll see.
Applying for many a job in SF, also looking at an affordable room on 9th and Lawton by the park. I'm pretty terrified that I'll start building my life again and three months from now, when my first scans are taken, it'll all come crumbling down again. Please please please cancer don't come back.
oh, and my birthday is next week, though I don't feel much like celebrating. Can I be 23 again?
I love all of you and hope to see many of you soon.
Now back to real life, back to solid ground.
I've been trying to handle all of my post-cancer emotions like an adult, i.e., not bitch about anything and keep the pain to myself. Like all of that hot air held in the balloon, I'm either going to violently combust or gently float on. We'll see.
Applying for many a job in SF, also looking at an affordable room on 9th and Lawton by the park. I'm pretty terrified that I'll start building my life again and three months from now, when my first scans are taken, it'll all come crumbling down again. Please please please cancer don't come back.
oh, and my birthday is next week, though I don't feel much like celebrating. Can I be 23 again?
I love all of you and hope to see many of you soon.
poignant and powerful
This past week end, I attended my niece's 13th birthday party. It was a really big deal (over 100 guests in attendance), with great food and a DJ. We all had a great time.
I spend a little time on the dance floor (when the era was right. Music from the 60s to the 80s tends to call my name). At one point I noticed my spouse looking over at us rather intently. When I asked him later he told me that he was having a "poignant moment."
We were three strong women, all mothers, all activists in our own way and all at different stages of cancer survivorship. And we were tearing up the dance floor. We were smoking (if I do say so myself) and not just as cancer patients, not just as women over 40. We were three women who loved to dance and who were having a great time.
I remember thinking, I really love dancing with these women. And when I was on the dance floor, I didn't think of cancer at all.
On fire!
My appointment with Dr. GPO this morning was like a big party. He brought WCK some apple juice, and then he called in the nurse who has been handling all of my Revlimid paperwork for the past two years so she could hear the good news. He handed her the form that's usually sent to the pharmacy every month and said, "Go ahead and get rid of this."
I suggested she set it on fire. It was a fun morning.
I suggested she set it on fire. It was a fun morning.
Starting Megace
I took my first dose of Megace at bedtime last night and of course thought I began to experience side effects within minutes. I asked Rik to find the sheet that came from the pharmacy and re-read all the issues, then took half an ativan to relax me. Well, I fell so soundly asleep that I only woke up once to pee! I slept soundly until the alarm just went off.
I have high hopes for the Megace. I take 5 ml in a liquid suspension, pouring it carefully into a tiny measuring cup where I have marked the proper dosage level. I could use a small syringe to pull up the same quantity, but I think the cup will be easier to keep clean.
So I had no worries, a sound night's sleep, and woke to a new morning. If you a praying person, please include for me a prayer that the Megace is effective at fighting my cancer with minimal side effects for a LONG time.
I have high hopes for the Megace. I take 5 ml in a liquid suspension, pouring it carefully into a tiny measuring cup where I have marked the proper dosage level. I could use a small syringe to pull up the same quantity, but I think the cup will be easier to keep clean.
So I had no worries, a sound night's sleep, and woke to a new morning. If you a praying person, please include for me a prayer that the Megace is effective at fighting my cancer with minimal side effects for a LONG time.
Thursday, May 21, 2009
Breast Reconstruction in Metastatic Breast Cancer Patients
Traditional medical opinion states that women with metastatic breast cancer are not candidates for breast reconstruction. Once metastases are diagnosed (stage 4 breast cancer), attention turns solely to aggressive medical treatment to prolong life. Breast reconstruction is no longer discussed as an option.
At least that was the consensus up until fairly recently.
Opinions have started to change over the last few years.
While we are still losing the battle with stage 4 breast cancer and most women will die from their disease, who are we to decide that these women should not be made "whole"? Why should any women interested in breast reconstruction die breastless?
As long as patients interested in reconstruction are medically stable and passed "fit for surgery", the psycho-social and quality of life benefits that breast reconstruction can provide should not be ignored. While the priority must always remain "life over breast", breast reconstruction should be discussed with patients regardless of the stage of the disease.
Dr C
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Dr Chrysopoulo is a board certified plastic surgeon specializing in breast reconstruction surgery after mastectomy using the patient's own tissue. PRMA Plastic Surgery, San Antonio, Texas. Toll Free: (800) 692-5565. Keep up to date with the latest news in breast reconstruction surgery and research at The Breast Cancer Reconstruction Blog.
******
******
Dr Chrysopoulo is a board certified plastic surgeon specializing in breast reconstruction surgery after mastectomy using the patient's own tissue. PRMA Plastic Surgery, San Antonio, Texas. Toll Free: (800) 692-5565. Keep up to date with the latest news in breast reconstruction surgery and research at The Breast Cancer Reconstruction Blog.
******
Cellcept is generic Now
Cellcept is now a generic medicine, good news for my wallet..... now for the rest of the meds we take daily and when we are sick, experiencing rejection, or just a little out of the norm.
Some recent Connotea bookmarks tagged "Cancer SC"
Cancer stem cells: a new paradigm for understanding tumor growth and progression and drug resistance, Rosaria Gangemi, Laura Paleari, Anna Maria Orengo, Alfredo Cesario, Leonardo Chessa, Silvano Ferrini, Patrizia Russo, Curr Med Chem 2009; 16(14): 1688-703 [PubMed Citation].
Targeting stem cells-clinical implications for cancer therapy, Lan C Tu, Greg Foltz, Edward Lin, Leroy Hood, Qiang Tian, Curr Stem Cell Res Ther 2009(May); 4(2): 147-53 [PubMed Citation].
TARGETING OF CANCER STEM CELL MARKER EpCAM BY BISPECIFIC ANTIBODY EpCAMxCD3 INHIBITS PANCREATIC CARCINOMA, Alexei V Salnikov and 9 co-authors, J Cell Mol Med 2009(Apr 2) [Epub ahead of print][PubMed Citation].
Number crunching in the cancer stem cell market, Malcolm R Alison, Shahriar Islam, Susan ML Lim, Breast Cancer Res 2009(Apr 24); 11(2): 302 [Epub ahead of print][PubMed Citation].
Cancer stem cell markers CD133 and CD24 correlate with invasiveness and differentiation in colorectal adenocarcinoma, Dongho Choi, Hyo Won Lee, Kyung Yul Hur, Jae Joon Kim, Gyeong-Sin Park, Si-Hyong Jang, Young Soo Song, Ki-Seok Jang, and Seung Sam Paik, World J Gastroenterol 2009(May 14_; 15(18): 2258-64 [PubMed Citation][Full text via PMC].
Targeting stem cells-clinical implications for cancer therapy, Lan C Tu, Greg Foltz, Edward Lin, Leroy Hood, Qiang Tian, Curr Stem Cell Res Ther 2009(May); 4(2): 147-53 [PubMed Citation].
TARGETING OF CANCER STEM CELL MARKER EpCAM BY BISPECIFIC ANTIBODY EpCAMxCD3 INHIBITS PANCREATIC CARCINOMA, Alexei V Salnikov and 9 co-authors, J Cell Mol Med 2009(Apr 2) [Epub ahead of print][PubMed Citation].
Number crunching in the cancer stem cell market, Malcolm R Alison, Shahriar Islam, Susan ML Lim, Breast Cancer Res 2009(Apr 24); 11(2): 302 [Epub ahead of print][PubMed Citation].
Cancer stem cell markers CD133 and CD24 correlate with invasiveness and differentiation in colorectal adenocarcinoma, Dongho Choi, Hyo Won Lee, Kyung Yul Hur, Jae Joon Kim, Gyeong-Sin Park, Si-Hyong Jang, Young Soo Song, Ki-Seok Jang, and Seung Sam Paik, World J Gastroenterol 2009(May 14_; 15(18): 2258-64 [PubMed Citation][Full text via PMC].
A rant about health insurance
I had a good day mostly except for the following. Dr G wrote me a new Rx for tincture of opium. Swedish Hospital pharmacy is the only place I could find in Seattle that stocks it. I dropped off my prescription and went to lunch with a friend.
A second pharmacist told me that my health insurance provider would not authorize a new prescription until May 30. I told him that I had told the doctor I spilled some of this medication and have only a bit left for the next few days. The pharmacist asked me to wait while he confirmed this with the doc and called the health insurance company.
Half an hour later the pharmacist told me that the insurance provider refused to authorize any more of this drug until May 30, regardless of the circumstances. If I paid for the drug myself it would cost $174 ($50 if covered by the health insurance, still a hefty copay).
They filled my other prescriptions (a $10 copay each for vicodin and Megace). I need to start the Megace either tonight or tomorrow morning, must read up on it.
I left the pharmacy after almost three hours of this game without my opium prescription. Next step? Call the insurance company and see what I can do to be a squeaky wheel and get the meds my doctor believes I need.
I am so FRUSTRATED!
A second pharmacist told me that my health insurance provider would not authorize a new prescription until May 30. I told him that I had told the doctor I spilled some of this medication and have only a bit left for the next few days. The pharmacist asked me to wait while he confirmed this with the doc and called the health insurance company.
Half an hour later the pharmacist told me that the insurance provider refused to authorize any more of this drug until May 30, regardless of the circumstances. If I paid for the drug myself it would cost $174 ($50 if covered by the health insurance, still a hefty copay).
They filled my other prescriptions (a $10 copay each for vicodin and Megace). I need to start the Megace either tonight or tomorrow morning, must read up on it.
I left the pharmacy after almost three hours of this game without my opium prescription. Next step? Call the insurance company and see what I can do to be a squeaky wheel and get the meds my doctor believes I need.
I am so FRUSTRATED!
Feeling Grateful
I keep waiting for the day when I'm one of those patients who reports for duty at the City of Hope once every six months. But, thanks to my recent complications, I've been driving to Duarte three times a week - a far cry from twice a year.
At least my frequent visits have reminded me of a few of the many things for which I'm grateful.
I'm a celebrity: Well, not really, but my doctor and all the staff treat me like one. I thought about this when I watched Farrah's Story and saw my doctor consulting with real-life celebrities Farrah Fawcett and Ryan O'Neal. All of us City of Hope patients get treated with the same level of care and compassion as a star. And we don't have to put up with the paparazzi.
I have enviable physical assets: Forgive me for bragging, but I have great veins. They are so outstanding that phlebotomists (blood takers) and nurses almost always comment on them. When I went in for my CT scan yesterday, the nurse said he didn't even need a tourniquet to pump my vein before the insertion of the IV. I'm an easy target and an easy blood draw and rarely feel a thing.
I wonder if Blood (a magzine for hematologists) would be interested in a center fold?
I'm covered: Cancer and serioius illnesses can be financially devastating, with or without insurance. (Mike C knows a thing or two about this.) In my case, all of my sky-high medical expenses (except for our annual deductible) have been completely covered. Not a day goes by that I don't thank God for this.
I'm surrounded: Loving, supportive, positive people are all around me, nearby and around the world. How about a giant group hug?
What about you? What are you grateful for these days?
(And, in case you're interested, those darn EOS went UP AGAIN. I am NOT thankful for that.)
At least my frequent visits have reminded me of a few of the many things for which I'm grateful.
I'm a celebrity: Well, not really, but my doctor and all the staff treat me like one. I thought about this when I watched Farrah's Story and saw my doctor consulting with real-life celebrities Farrah Fawcett and Ryan O'Neal. All of us City of Hope patients get treated with the same level of care and compassion as a star. And we don't have to put up with the paparazzi.
I have enviable physical assets: Forgive me for bragging, but I have great veins. They are so outstanding that phlebotomists (blood takers) and nurses almost always comment on them. When I went in for my CT scan yesterday, the nurse said he didn't even need a tourniquet to pump my vein before the insertion of the IV. I'm an easy target and an easy blood draw and rarely feel a thing.
I wonder if Blood (a magzine for hematologists) would be interested in a center fold?
I'm covered: Cancer and serioius illnesses can be financially devastating, with or without insurance. (Mike C knows a thing or two about this.) In my case, all of my sky-high medical expenses (except for our annual deductible) have been completely covered. Not a day goes by that I don't thank God for this.
I'm surrounded: Loving, supportive, positive people are all around me, nearby and around the world. How about a giant group hug?
What about you? What are you grateful for these days?
(And, in case you're interested, those darn EOS went UP AGAIN. I am NOT thankful for that.)
NEW ARRIVALS
1. Thiriez Blonde 750ml (France)
2. Thiriez Amber 750ml (France)
3. Thiriez Extra 750ml (France)
4. De Molen Rasputin Imperial Stout 750ml-LIMITED QUANTITIES!!! (Netherlands)
5. Inveralmond Blackfriar 16oz (Scotland)
6. Inveralmond Lia Fail 16oz (Scotland)
7. Inveralmond Ossian Ale (Scotland)
8. Mikkeller Nelson Sauvin Single Hop IPA (Denmark/Belgium)
9. Handbryggiert Odin's Tipple (Norway)
10. Nogne-O Batch #100 (Norway)
11. Nogne-O Dark Horizon Batch #2 (Norway)
12. Nogne-O Dugges Sahti (Norway/Finnish style)
13. Nogne-O Sunturnbrew (Norway)
14. Ise Kadoya Triple Hop (Japan)
15. Ise Kadoya Stout (Japan)
16. Ise Kadoya Genmai Ale
(Japan)
17. Baird Natsumikan Ale (Japan)
Keeping it international,
-dave
2. Thiriez Amber 750ml (France)
3. Thiriez Extra 750ml (France)
4. De Molen Rasputin Imperial Stout 750ml-LIMITED QUANTITIES!!! (Netherlands)
5. Inveralmond Blackfriar 16oz (Scotland)
6. Inveralmond Lia Fail 16oz (Scotland)
7. Inveralmond Ossian Ale (Scotland)
8. Mikkeller Nelson Sauvin Single Hop IPA (Denmark/Belgium)
9. Handbryggiert Odin's Tipple (Norway)
10. Nogne-O Batch #100 (Norway)
11. Nogne-O Dark Horizon Batch #2 (Norway)
12. Nogne-O Dugges Sahti (Norway/Finnish style)
13. Nogne-O Sunturnbrew (Norway)
14. Ise Kadoya Triple Hop (Japan)
15. Ise Kadoya Stout (Japan)
16. Ise Kadoya Genmai Ale
(Japan)17. Baird Natsumikan Ale (Japan)
Keeping it international,
-dave
back and back
I am home after a lovely, packed extended week end away.
I also pulled something in my back getting my suitcase off the train as I arrived in Ottawa. It hurts.
I have a bunch of things I want to write about here (my week end, some thoughts on this whole book promoting business, two book reviews and a couple of other things) but today, I am too sore to sit still for long.
Maybe a gentle walk will help.
I also pulled something in my back getting my suitcase off the train as I arrived in Ottawa. It hurts.
I have a bunch of things I want to write about here (my week end, some thoughts on this whole book promoting business, two book reviews and a couple of other things) but today, I am too sore to sit still for long.
Maybe a gentle walk will help.
Wednesday, May 20, 2009
Don't throw that old bra away!
Above is a fabric piece, In Memory of My Breasts, by Marcia Ginsberg, using old bras. It is part of an exhibit, The Healing Power of Art, opening on Thursday in Highland Park, Illinois, at The Art Center. If you're the practical type, you could use your old bras to make a plethora of useful things: yarmulkes, knee pads (especially for gardening so you can pose for photos of the Survivor Who Is Happy and Cured and Gardening Just to Prove It), face masks to protect against the flu formerly known as Swine, ear warmers (best to use the bras that attach in the front), bookends (stiffen with starch or glue), cat toy, dog toy, dog shoes. And if you're inspired you might want to sew up a toy out of underpants:
Tell Cancer Bitch your ideas for new life for old bras in the comments section.
My Silver Lining
I was reading the comments to my last post. Thank you Barney, Karen and Wendy. Nice to "meet" you Barney, I'd "met" Karen and Wendy before, they are people I am so glad to know and who inspire me.
I loved Wendy's poem....and could relate. We all know the dark clouds; we all struggle with uncertainty, lack of control and our loss of innocence post diagnosis, the scares, the anxiety of waiting for scan results. But she’s right, there are silver linings we can find when we look.
The silver lining in my own cancer experience has been the people I've met who have also been diagnosed with cancer and who have shared their lives and thoughts with me on our common journey. I've felt that I am not walking alone. We are family in a sense. I looked up the definition of family, it includes "a group of people united by certain convictions or a common affiliation: fellowship, a group of things related by common characteristics”. One of the things I've learned as I grow older is that family to me encompasses much more than just those who are genetically related to me. To me family are also the people I connect with and share my life with, to that end I belong to several families that are all just as important to me as my genetic one.
I loved the book "Dancing In Limbo", not because it gave me the answers I was seeking, but because when I was going through a difficult time it helped me know that I wasn't neurotic, that the feelings I had were shared by many others in the cancer community, that the uncertainty and "limbo" I was feeling was normal in the cancer community, even many years out.
I loved that in the comments to my last post, the word "exhausting" was used in relation to trying to live every day to its fullest and to make the most of every moment. It is an exhausting way to live, though I'd never heard anyone else use that word, it is so appropriate. I didn't realize how much fun assuming and planning for a future was until I was put in the position of not contemplating a future. I miss feeling okay about wasting an entire day doing mindless and non-productive things.
My heart so goes out to Karen, I so relate to her comment "I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself." I've done exactly the same thing before, worn the same mask.
And Karen, you and I received the same dismal prediction for the same cancer and same pathology; we were also both Stage 4. So I know how hard it is to live with that sense of impending doom and likely recurrence. I am proof it is possible to defy the odds, though I didn't really start feeling less vulnerable until maybe the 6th year cancer-free. At seven years I felt even less vulnerable, then at 8 years, I had pelvic symptoms just about the time I heard from an 8 year appendix cancer survivor just diagnosed with an aggressive recurrence. I can tell you, while the sense of living in "limbo" never fully goes away in ("Dancing in Limbo" they found that even long term survivors continued the sense of living in limbo), the limbo does become less prominent with time. I still don't take the future for granted and don't feel totally "safe", but I feel safer than I did the first several years. I now can say "next year", I can plan (though tentatively) for the future. I even sometimes contemplate going to grad school. I plan vacations. I put money toward retirement, but not with the certainty it will ever be of value to me. It's more for "just in case" I reach old age. But I don't have the before-cancer innocence and never again will.
Barney, I know another person who is post appendix cancer diagnosis while struggling with bipolar disorder. I know your road is a very tough road.
I've found that some of the things that have been so difficult for me as a cancer survivor are less so when I know someone else shares my experience, understands and can relate. I love a saying I heard once that difficulties are lessened and joy multiplied when shared. In that sense I think the best thing we can do for ourselves as cancer survivors is to connect, support and empower others in our community, in our "family". I am looking for ways to make that happen.
I loved Wendy's poem....and could relate. We all know the dark clouds; we all struggle with uncertainty, lack of control and our loss of innocence post diagnosis, the scares, the anxiety of waiting for scan results. But she’s right, there are silver linings we can find when we look.
The silver lining in my own cancer experience has been the people I've met who have also been diagnosed with cancer and who have shared their lives and thoughts with me on our common journey. I've felt that I am not walking alone. We are family in a sense. I looked up the definition of family, it includes "a group of people united by certain convictions or a common affiliation: fellowship, a group of things related by common characteristics”. One of the things I've learned as I grow older is that family to me encompasses much more than just those who are genetically related to me. To me family are also the people I connect with and share my life with, to that end I belong to several families that are all just as important to me as my genetic one.
I loved the book "Dancing In Limbo", not because it gave me the answers I was seeking, but because when I was going through a difficult time it helped me know that I wasn't neurotic, that the feelings I had were shared by many others in the cancer community, that the uncertainty and "limbo" I was feeling was normal in the cancer community, even many years out.
I loved that in the comments to my last post, the word "exhausting" was used in relation to trying to live every day to its fullest and to make the most of every moment. It is an exhausting way to live, though I'd never heard anyone else use that word, it is so appropriate. I didn't realize how much fun assuming and planning for a future was until I was put in the position of not contemplating a future. I miss feeling okay about wasting an entire day doing mindless and non-productive things.
My heart so goes out to Karen, I so relate to her comment "I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself." I've done exactly the same thing before, worn the same mask.
And Karen, you and I received the same dismal prediction for the same cancer and same pathology; we were also both Stage 4. So I know how hard it is to live with that sense of impending doom and likely recurrence. I am proof it is possible to defy the odds, though I didn't really start feeling less vulnerable until maybe the 6th year cancer-free. At seven years I felt even less vulnerable, then at 8 years, I had pelvic symptoms just about the time I heard from an 8 year appendix cancer survivor just diagnosed with an aggressive recurrence. I can tell you, while the sense of living in "limbo" never fully goes away in ("Dancing in Limbo" they found that even long term survivors continued the sense of living in limbo), the limbo does become less prominent with time. I still don't take the future for granted and don't feel totally "safe", but I feel safer than I did the first several years. I now can say "next year", I can plan (though tentatively) for the future. I even sometimes contemplate going to grad school. I plan vacations. I put money toward retirement, but not with the certainty it will ever be of value to me. It's more for "just in case" I reach old age. But I don't have the before-cancer innocence and never again will.
Barney, I know another person who is post appendix cancer diagnosis while struggling with bipolar disorder. I know your road is a very tough road.
I've found that some of the things that have been so difficult for me as a cancer survivor are less so when I know someone else shares my experience, understands and can relate. I love a saying I heard once that difficulties are lessened and joy multiplied when shared. In that sense I think the best thing we can do for ourselves as cancer survivors is to connect, support and empower others in our community, in our "family". I am looking for ways to make that happen.
Good news from the doc
I saw Dr G today and he says my blood work was fine and my chemistry is in good shape. So no more potassium or Imodium, although I am to continue with the Bactroban (daily up the nose to prevent infection) and the tincture of opium (to fight diarrhea). I can taper down from four times a day to twice a day on the opium since I didn't think I wanted to go cold turkey on it.
I can schedule my next Zometa at any time, including waiting out another few weeks until the cycle starts again. Dr G says to call him tomorrow and he will start me on the Megace. And I am clear to eat whatever I want!
G drove me to the doc, sat with me while I had the blood draw and waited for the results. Then we went out to lunch at Quinn's Pub where I had a truly delicious hamburger and fries and G had the delightful vegetarian sandwich and shared my fries. There were so many fries we brought some back for Rik to nibble on.
This has been a good day and it's not close to over yet!
I can schedule my next Zometa at any time, including waiting out another few weeks until the cycle starts again. Dr G says to call him tomorrow and he will start me on the Megace. And I am clear to eat whatever I want!
G drove me to the doc, sat with me while I had the blood draw and waited for the results. Then we went out to lunch at Quinn's Pub where I had a truly delicious hamburger and fries and G had the delightful vegetarian sandwich and shared my fries. There were so many fries we brought some back for Rik to nibble on.
This has been a good day and it's not close to over yet!
Case closed!
I make my insurance company a little nervous. No matter how often I explain that I'm not on the brink of having a stem-cell transplant (and racking up bills for a stem-cell transplant), they seem convinced that I could still go off and have a transplant at any minute. For quite some time now, I've been assigned to a special transplant case manager, who calls me every month to make sure that I'm not dying and/or having a transplant.
Today she called and said that she'd contacted The Mayo Clinic, and based on what she'd been told, she was going to officially close my case.
Hurrah!
Today she called and said that she'd contacted The Mayo Clinic, and based on what she'd been told, she was going to officially close my case.
Hurrah!
Looking forward to Folklife!
Those of you in the greater Seattle area can hear me sing with Dunava at the Northwest Folklife Festival
Sunday, May 24, 2009
6:30 - 7 PM
KUOW Center House Theatre
Dunava is part of the Global Women's Voices show
You can catch me hanging out afterwards at the Balkan Dance Party from 7 - 10 PM (or until I crash).
Folklife is the best!
Post-hospital checkup #2
Today I am scheduled to see the oncologist for my second post-hospital checkup. I have finished all of my antibiotics, still taking potassium and tincture of opium/Imodium for the diarrhea, plus my usual vitamins etc.
I imagine it will be like last time: the receptionist will check me in. I will have my port accessed to draw blood for labs. I'll wait an hour or more for the labs to come back. Then I'll see Dr. G, we'll talk, he'll want to examine me.
Maybe he will send me home with more meds, depending on my blood work. Maybe he will want to start me on the Megace. Or maybe I'll just get another week to increase my strength.
I do feel as though I have 5% improvement every day. Yesterday I felt like I was at 80%, today I feel a little stronger.
More later when I return....
I imagine it will be like last time: the receptionist will check me in. I will have my port accessed to draw blood for labs. I'll wait an hour or more for the labs to come back. Then I'll see Dr. G, we'll talk, he'll want to examine me.
Maybe he will send me home with more meds, depending on my blood work. Maybe he will want to start me on the Megace. Or maybe I'll just get another week to increase my strength.
I do feel as though I have 5% improvement every day. Yesterday I felt like I was at 80%, today I feel a little stronger.
More later when I return....
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