Once I had a basic idea of how to put together a web site from the class, I did on-line tutorials to learn more. I learned about web hosting and code and templates and tables and hyperlinks and frames and FTP. I became obsessed with putting together my web site, Appendix Cancer and Peritoneal Surface Malignancies. I was driven. I had to learn a lot to do it.
The toughest part was re-reading all of the medical literature I'd read initially when I was diagnosed. The horrible statistics, the grim predictions, the detailed surgical reports. Emotionally it took me back to the horrible feelings I had when I first learned what I was up against. I thought of those who suffer post traumatic stress after returning from war.
Interesting, many who have been through tough cancer battles are now being diagnosed with post traumatic stress syndrome. I recently read of a breast cancer survivor who decided one day to wear a scarf. Turned out the scarf she chose to match her outfit was one she had used to cover her baldness while on chemo. On seeing the scarf in her drawer, she became physically ill. In the end she disposed of all scarves she had worn during that time. This is an interesting article, Post-traumatic Stress Disorder and Cancer . I've since communicated with appendiceal cancer patients who have been diagnosed with PTSD. Constructing the web site was hard enough for me emotionally that I joined a support group for the first time.
I published my web site early in 2006, almost the anniversary of my 5 year survival. I had a contact email on my site, but didn't know if I'd hear from anyone. It just made me feel I'd done the right thing by making the information I knew accessible on-line. I didn't really plan a life of cancer advocacy after that, I just wanted to create and publish the web site.
But then doors opened, then my world expanded. I think I discoved my purpose.
Tuesday, September 30, 2008
The New Year
This is the Gaon (Genius) of Vilna, allegedly my ancestor
It is the new year for us Hebrews (as we were called at Ellis Island) or Israelites (as we're called in France, because Juifs is too reminiscent of the Nazi occupation). My father used to say he was a WASH--a white Anglo-Saxon Hebrew. He wasn't Anglo-Saxon except in language. And much culture. I always think of my father during services, because he was known for whispering bons mots and sharing sugarless chewing gum. There's a prayer called the Aleynu, during which, according to tradition, Jews would kneel. That was discontinued because it was too much like Christianity, the rabbi said today. Generally, we bow our heads at one point in the prayer. The next sentence of the prayer begins with: Lifneymelech. See, it sounds like Lift, my father used to always say. Today some of us did kneel, because it is a high holiday. A big deal. Christians have Christmas and Easter, and we have Rosh Hashanah and Yom Kippur. Ten days apart. During which we are under judgment: Shall we be written in the book of life? Should we be allowed to live? Should we die? All this is metaphorical, at least to me. We twist the tradition this way and that in order to make it relevant. Or I do. When you look at the prayers, you can't *not* think about the Holocaust. If you're me. You can't *not* think about the professions of faith you're chanting, the images of divine light and protection you're conjuring. They believed all this (some of them), they believed they were protected, and they were torn from civilization and murdered.
There is a portion of the Yom Kippur service that recognizes martyrs through time. You are not encouraged to be a martyr, but I suppose the architects of the religion have thought that it's important to stay aware of the historical defenders of the faith. As a community we mourn them. Do we pay tribute? Perhaps. We make them (some of them) the stuff of legend. Role models in extremis.
Rabbi Yitz Greenberg tells us: When the righteous Rabbi Akiva was flayed alive by the Romans for daring to rebel, we are told that the angels shrieked in horror. "It is my decree," was God's inscrutable answer. Or as Stanley Elkin once put it in his novel "The Living End" (this is paraphrase:) God is asked why he created so much havoc and suffering on earth. He answers: It made a better story.
As always, our martyrs are better than their martyrs. Our guerrillas are freedom fighters, theirs are terrorists. God's on our side.
More About Purpose
I tried to leave the cancer world, at least as much as I could while still seeing an oncologist regularly and being tested for cancer every three months. I tried not to focus on cancer, to go back to my "normal" life, but I learned the hard truth of surviving cancer, we never really go back to our "normal" before-cancer lives.
I'd also had to explore and redefine my faith. I never believed there could be no God. I have a mind that loves science. I can't believe there is not an intelligent designer of life as we know it. A scientist calculated the odds of life being the result of random chance at 1 in 10 to the 40,000 power...about the odds of "having a tornado tear through a junkyard and form a Boeing 747 jetliner" (Sir Fred Hoyle speaking at the British Academy of Science). I loved the book The Science of God, written by a Jewish physicist with a PhD from MIT.
I was raised Christian, but still explored and compared other religions, I was never good at doing something just because I was told to do it. In the end, many years ago, I became a Christian. My earlier experiences in churches made me uncomfortable, so for many years I did not attend a church. My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That's the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone.
Faith puts a twist on a cancer diagnosis, though. Cancer doesn't mean a potential ending to your life, your life is eternal. You never die, just change locations. And we will all someday cross the death threshold, so we don't really "beat the odds" by surviving, the odds are a terminal fate for all of us. I wanted only two things after my cancer diagnosis. To raise my kids to adulthood, to not abandon them, and to make whatever time was left in my life meaningful. I wanted my life to make a difference. That's all. No more retirement plans. No more plans to live to old age.
I recently read a book by Mark Batterson that I loved. He put into words what I think now;
"I am not convinced that the date of your death is the date on your gravestone. Most people die long before that date. We start dying when we have nothing to live for. And we don't really start living until we find something worth dying for" (Wild Goose Chase).
Lots of people live to an old age long after they've died inside. In another book of Batterson's he cites research presented that indicates "the greatest human fear is having lived a meaningless life". I believe that's true.
A few years after my diagnosis, I came into contact with others diagnosed with appendix cancer who were told, as I was, that there was not available treatment. They were told they were terminally ill. People who wanted to live long enough to raise their kids, like I did. People who didn't know how to find and read medical literature. I felt it was wrong of me, as a medical professional who could locate, read and understand medical literature and who had read almost all of the medical information published about appendix cancer, not to share what I knew. I was a nurse, I had made a career of being the go-between in the medical community. I had a career educating patients about their disease and translating medical information into layman's terms for the general public. As a medical professional and one of the afflicted, I was perfect for the job of educating and supporting newly diagnosed appendix cancer patients.
I didn't know how to communicate with all of those diagnosed with a rare cancer who were spread out all over the world. The Internet seemed the only way. I hated the idea of putting my personal information on the Internet. I never gave even friends medical information or direction outside of my work environment. I never let strangers know my medical credentials. I'd always made a point to keep my name and photos off of the Internet. I wasn't very Internet savvy and had no clue how to design a web site.
But I signed up to take an 8 hour evening class in beginning web site design at a local high school. I couldn't afford the software for the class, so for the first time ever tried out EBay and found it for $35 (my first financial dealing online with a stranger, something else I'd sworn not to do).
The rest of my life changed forever with that decision.
I'd also had to explore and redefine my faith. I never believed there could be no God. I have a mind that loves science. I can't believe there is not an intelligent designer of life as we know it. A scientist calculated the odds of life being the result of random chance at 1 in 10 to the 40,000 power...about the odds of "having a tornado tear through a junkyard and form a Boeing 747 jetliner" (Sir Fred Hoyle speaking at the British Academy of Science). I loved the book The Science of God, written by a Jewish physicist with a PhD from MIT.
I was raised Christian, but still explored and compared other religions, I was never good at doing something just because I was told to do it. In the end, many years ago, I became a Christian. My earlier experiences in churches made me uncomfortable, so for many years I did not attend a church. My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That's the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone.
Faith puts a twist on a cancer diagnosis, though. Cancer doesn't mean a potential ending to your life, your life is eternal. You never die, just change locations. And we will all someday cross the death threshold, so we don't really "beat the odds" by surviving, the odds are a terminal fate for all of us. I wanted only two things after my cancer diagnosis. To raise my kids to adulthood, to not abandon them, and to make whatever time was left in my life meaningful. I wanted my life to make a difference. That's all. No more retirement plans. No more plans to live to old age.
I recently read a book by Mark Batterson that I loved. He put into words what I think now;
"I am not convinced that the date of your death is the date on your gravestone. Most people die long before that date. We start dying when we have nothing to live for. And we don't really start living until we find something worth dying for" (Wild Goose Chase).
Lots of people live to an old age long after they've died inside. In another book of Batterson's he cites research presented that indicates "the greatest human fear is having lived a meaningless life". I believe that's true.
A few years after my diagnosis, I came into contact with others diagnosed with appendix cancer who were told, as I was, that there was not available treatment. They were told they were terminally ill. People who wanted to live long enough to raise their kids, like I did. People who didn't know how to find and read medical literature. I felt it was wrong of me, as a medical professional who could locate, read and understand medical literature and who had read almost all of the medical information published about appendix cancer, not to share what I knew. I was a nurse, I had made a career of being the go-between in the medical community. I had a career educating patients about their disease and translating medical information into layman's terms for the general public. As a medical professional and one of the afflicted, I was perfect for the job of educating and supporting newly diagnosed appendix cancer patients.
I didn't know how to communicate with all of those diagnosed with a rare cancer who were spread out all over the world. The Internet seemed the only way. I hated the idea of putting my personal information on the Internet. I never gave even friends medical information or direction outside of my work environment. I never let strangers know my medical credentials. I'd always made a point to keep my name and photos off of the Internet. I wasn't very Internet savvy and had no clue how to design a web site.
But I signed up to take an 8 hour evening class in beginning web site design at a local high school. I couldn't afford the software for the class, so for the first time ever tried out EBay and found it for $35 (my first financial dealing online with a stranger, something else I'd sworn not to do).
The rest of my life changed forever with that decision.
Mesothelioma Awareness Ribbon
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On Sept. 28th, 7:30 pm
a chunk of my hair fell out as I was styling it for photobooth pictures.
I don't think you'll ever forget the first time your hair falls out. It is like an anvil to the head. It's the realization that yes, I really DO have cancer. This hasn't just been a dream. I am a sick person.
bummer.
I don't think you'll ever forget the first time your hair falls out. It is like an anvil to the head. It's the realization that yes, I really DO have cancer. This hasn't just been a dream. I am a sick person.
drops in the water
Today, is the Jewish New Year.
My spouse is Jewish but I am not.
Neither of us is even remotely religious.
But I love the idea of fall renewal, of having the chance to start a brand new year, in this time of harvest and change.
Nonlinear Girl has a post on this subject today and on having the chance to "cast off" the things that hold us back:
You can read more of this post here and leave a comment, if you like, about the things you would toss away to help you move forward.
I wrote:
My spouse is Jewish but I am not.
Neither of us is even remotely religious.
But I love the idea of fall renewal, of having the chance to start a brand new year, in this time of harvest and change.
Nonlinear Girl has a post on this subject today and on having the chance to "cast off" the things that hold us back:
"In the Jewish religion, today is the ceremony Tashlich, which is Hebrew for "casting off." As part of the start of a new year, this is a chance to symbolically cast off the sins of the past year. Jews go to a natural body of flowing water and throw in pieces of bread to symbolize the shedding of these old errors. The idea is to get rid of things you do not want to take with you into the new year. While traditionalists focus on specific errors made in the past year, right now I am thinking more about the ways I make life unnecessarily harder for myself. By tossing away some of these I hope I will feel lighter about whatever happens in the next year."
You can read more of this post here and leave a comment, if you like, about the things you would toss away to help you move forward.
I wrote:
Toss in my insecurities about my inability to be an artist, my shame about having cancer and the fears that keep me from 'doing.'
The Ultimate Buns
I was looking through my photo archive for a picture of me with buns, and I couldn't find one. I don't know if this is because I have never had junk in the trunk or we just never managed to get it on film.
Doesn't matter 'cause I'm talking about the ultimate hamburger bun. Did you know that Fraiche, best new restaurant in LA, serves theirs on a gougères, that crazy deliciouos French bread that's like a savory cream puff?
Check it out at Open Mouth, Insert Fork. And seriously think about a Culver City field trip.
Doesn't matter 'cause I'm talking about the ultimate hamburger bun. Did you know that Fraiche, best new restaurant in LA, serves theirs on a gougères, that crazy deliciouos French bread that's like a savory cream puff?
Check it out at Open Mouth, Insert Fork. And seriously think about a Culver City field trip.
writing my way through breast cancer
I have a new post up at MyBreastCancerNetwork.Com:
"When I was first diagnosed with breast cancer, in January 2006, I was given an envelope full of information, pamphlets about available resources, a calendar (to track all the appointments) and a journal for chronicling, “my breast cancer journey.”
While I had kept a journal for brief periods of my life in the past (and most actively while travelling), I set this one aside. I was far too overwhelmed with absorbing information and trying not to feel overwhelmed to contemplate keeping a personal diary of my feelings.
I did however, choose to start a blog. For most of my professional life, I did some form of communications or public relations work. I was strongly motivated to control the “message” around my breast cancer. I wanted to be the one to determine the Who, What, Where and When (if not the Why) of my cancer and its treatment. I also saw writing, as a way to process my experiences, as an important side benefit.
I could never have predicted how important my blog would come to my survival. I thrived on the connections I made, the community to whom I connected and, in opening myself up to others, I began to feel much stronger and more confident."
You can read the rest of this post here.
Monday, September 29, 2008
The Great Big Nothing
Update: There is no update. It's been about a week since the biopsy, but no word from the cancer agency. Which gives me hope. Usually, if they don't get back to you asap, that means there's nothing exciting to say. Except that I would consider it exceptionally exciting to have no cancer.
On Friday, Chloe had a little freak-out when I dropped her off at school. The night before, she asked me about the bandage on my chest from the biopsy. She asked me, "Mama, did they put a hole in your lung?" I assured her that it was just a little boo-boo from a test and that it didn't hurt. She seemed okay with that. But when I dropped her off at school the next day, she cried after me when I went out the door. She said, "Mama! Don't leave me! Don't go!" I came back and hugged her and told her that I would see her at the end of school. After a few moments of soothing, she was okay. One of her teachers followed me out the door, and I explained to him that Chloe was asking me about my biopsy scar, and it scared her. Then I just busted out into sobbing in front of him and the community centre manager. I was just overwhelmed in the moment, in the fear in Chloe's eyes. It sucked.
Anyway, so I spent this weekend just playing with the kids and not worrying about anything else. We had a fun time building stuff and playing with dolls.
Then today, Chloe and I were sitting in the Costco food court waiting for Henry and Mylo to show up. She was munching on roasted seaweed (her favourite treat). Then she asked me, "Mama, did you die when you went to the big doctor?"
I said, "You mean when I went to the hospital? I didn't die. See, I'm alive, talking to you."
Chloe said, "Yeah, you're right. Cuz when you die, you go under the ground. And then aliens come and take you away and you never come back."
I replied, "Yeah, something like that. Some people think there's God and they either go to heaven or hell. Some people think you come back as an animal or another person. Some think that nothing happens. But no one knows. So aliens is a good idea too."
She said, "Yep."
I think Chloe is a prophet.
On Friday, Chloe had a little freak-out when I dropped her off at school. The night before, she asked me about the bandage on my chest from the biopsy. She asked me, "Mama, did they put a hole in your lung?" I assured her that it was just a little boo-boo from a test and that it didn't hurt. She seemed okay with that. But when I dropped her off at school the next day, she cried after me when I went out the door. She said, "Mama! Don't leave me! Don't go!" I came back and hugged her and told her that I would see her at the end of school. After a few moments of soothing, she was okay. One of her teachers followed me out the door, and I explained to him that Chloe was asking me about my biopsy scar, and it scared her. Then I just busted out into sobbing in front of him and the community centre manager. I was just overwhelmed in the moment, in the fear in Chloe's eyes. It sucked.
Anyway, so I spent this weekend just playing with the kids and not worrying about anything else. We had a fun time building stuff and playing with dolls.
Then today, Chloe and I were sitting in the Costco food court waiting for Henry and Mylo to show up. She was munching on roasted seaweed (her favourite treat). Then she asked me, "Mama, did you die when you went to the big doctor?"
I said, "You mean when I went to the hospital? I didn't die. See, I'm alive, talking to you."
Chloe said, "Yeah, you're right. Cuz when you die, you go under the ground. And then aliens come and take you away and you never come back."
I replied, "Yeah, something like that. Some people think there's God and they either go to heaven or hell. Some people think you come back as an animal or another person. Some think that nothing happens. But no one knows. So aliens is a good idea too."
She said, "Yep."
I think Chloe is a prophet.
Normal
I can finally same I am pseudo normal as it relates to my tach levels I am not too suppressed and my levels aren't too high my tachrelemus levels are finally where the different transplant doctors want them to be hovering at about 10.0 to 10.6 / 10.7... ish which is good; because it is cold and flu season and y'all are making me sick.
Erin Go Bra!
We went to South Dakota over the weekend to visit Jay's family. On Sunday, we were able to participate in South Dakota's first Susan G. Komen Race for the Cure with a lot of Jay's family members, including his Aunt Mary, who is a breast cancer survivor! Woo!
Jay's sister had the task of coming up with a good name for our team. She noticed that a lot of the team names, like everything else in the world these days, were centered around breasts. There was "The Breast Team Ever" and my absolute favorite, "These Boobs Were Made For Walkin'". We also saw a group of women wearing t-shirts that said, "Save the Ta Tas" and a group of fraternity guys wearing shirts that proclaimed "PHI DELTS (HEART SYMBOL) BOOBS!"
I'm sure their love of boobs is purely scientific.
Anyway, since everyone on our team is Irish, the name of our team was "Erin Go Bra". Heh. Erin Go Bra did very well, in that everyone crossed the finish line eventually. Here is a photo I took from the very back of the crowd as we finished. Those of you familiar with Vermillion will recognize the luxurious Prairie Inn as we make our way to the Dome:
I decided that if I ever get a team together for a myeloma run/walk, the name of our team will be "The Dexy Midnight Runners."
Jay's sister had the task of coming up with a good name for our team. She noticed that a lot of the team names, like everything else in the world these days, were centered around breasts. There was "The Breast Team Ever" and my absolute favorite, "These Boobs Were Made For Walkin'". We also saw a group of women wearing t-shirts that said, "Save the Ta Tas" and a group of fraternity guys wearing shirts that proclaimed "PHI DELTS (HEART SYMBOL) BOOBS!"
I'm sure their love of boobs is purely scientific.
Anyway, since everyone on our team is Irish, the name of our team was "Erin Go Bra". Heh. Erin Go Bra did very well, in that everyone crossed the finish line eventually. Here is a photo I took from the very back of the crowd as we finished. Those of you familiar with Vermillion will recognize the luxurious Prairie Inn as we make our way to the Dome:
I decided that if I ever get a team together for a myeloma run/walk, the name of our team will be "The Dexy Midnight Runners."
so many lovely people
I left for Toronto early Thursday morning and got back late last night.
I spent time with friends and family that I love very much.
I didn't get enough time with anyone but I enjoyed every moment.
And I ate. And ate. And ate.
I am tired today.
But I am happy.
I spent time with friends and family that I love very much.
I didn't get enough time with anyone but I enjoyed every moment.
And I ate. And ate. And ate.
I am tired today.
But I am happy.
Two blog posts about cancer stem cells
Two recent blog posts by Kevin Graham (thanks to Drew Lyall):
1) Meet Kevin Graham: Cancer stem cell researcher, Connecting for Kids, September 19, 2008. Excerpt:
1) Meet Kevin Graham: Cancer stem cell researcher, Connecting for Kids, September 19, 2008. Excerpt:
Have you ever heard of tumour stem cells? Did you know that stem cell research is being used to search for a cure for brain tumours? Admittedly, these probably aren’t the first things that jump to your mind when you hear about stem cell research, but that’s exactly why we started this forum.2) Stem cells, Cancer and Cancer Stem Cells, Connecting for Kids, September 24, 2008. Excerpt:
How do you target a cancer stem cell? This is one of the many ways in which stem cell research is paying off. Early indications are that normal stem cells and cancer stem cells share many of the same cellular processes. Research over the years has compiled an amazing amount of data about how normal stem cells function, information that is now being rapidly applied to cancer stem cells.The right frame of both posts also includes links to brief profiles of three other stem cell researchers at the Hospital for Sick Children (SickKids) in Toronto: Janet Rossant (mammalian developmental biology and genetics), Peter Dirks (cancer stem cells of brain tumors) and Freda Miller (neuronal stem cells and neuronal growth, survival and apoptosis).
Purpose
My appendix tumor had perforated and scattered cancer cells into my abdomen, and because I had other metastatic tumors found in my abdomen at the time of my second surgery, there was a very high probability my cancer would return after treatment. It was especially likely it would return as I had a very high grade tumor that statistically had poor outcomes in other patients. Signet ring is a fast growing and very invasive type of cancer that can be resistant to chemotherapy. Even with advanced treatment for my cancer, my long term outlook was very uncertain. Many with appendix cancer suffer recurrences.
I learned that in the cancer world, the toughest time isn't when we are going through the surgery and chemo, but the long time afterwards when we have to watch and wait after we have put down our cancer-fighting tools. Finishing chemo was difficult, chemo had been my security blanket. I was in treatment for almost a year. In hindsight, the year of treatment was the easy part. The living in limbo between cancer tests, the feeling vulnerable, the knowledge that my world could potentially fall out from under me with every test made the first few years after treatment very difficult.
I felt better after three years, but I still felt vulnerable even after that. I'd learn of people who'd succumbed to recurrences at 4 and 5 years. I think after cancer we all feel some degree of vulnerability for a long time, maybe forever.
After I finished treatrment, I didn't want to go right back into clinical nursing. I'd been in hospitals and doctors offices so much, I wanted a break from the medical environment. I worked for a bit in an assisted living facility (around lots of people who had made it to "old") and taught at a local college. I put all of my paychecks towards my medical bills. I started doing a lot of volunteer work. I delivered meals to the homebound elderly, I ran a soup kitchen, I started a service group at my church, I did free musical entertainment at nursing homes, I mowed elderly neighbors lawns and raked their leaves, I participated in our communities Christmas in September rehabbing houses for the poor. I'd done some of that before cancer, but now I did a lot more.
Volunteering did a lot of good things for me. It kept me busy and kept my mind off of cancer. It was good for me in that it entailed no real commitments; I had trouble making commitments after cancer as my future was so uncertain. Volunteer work also made me feel good as I was helping others in need, meeting great people and getting my mind off of myself. I had a great need to give back; I had been given so much by so many people through my own tough time. I had a great need to make my life purposeful, I think I needed to feel worthy of my survival, to be deserving of it.
I had actually been struggling with purpose before my cancer diagnosis. I was thinking of a career change maybe, a new direction. The whole mid-life time for reflection and reassessment, the need to make sure my life counted, that I was fulfilling my purpose in life, doing what I was meant to do. I think maybe all of us get to that point. About that time The Purpose Driven Life, Pathways to Purpose and lots of similar books were bestsellers in bookstores. Maybe us baby boomers were all hitting middle age and wanting to make sure our lives counted, that we were doing something meaningful with our lives.
Surviving cancer made me obsessed with a need to find purpose in my life, though. I'd seen so many lose the battle. I'd been told I was not going to survive and I had, at least for awhile. I went through a phase where everything I did had to have meaning and be important, I didn't want to waste any of the time I had been given.
But I wouldn't volunteer in the cancer community. Even when I was asked to talk to someone newly diagnosed with cancer I couldn't do it.
I learned that in the cancer world, the toughest time isn't when we are going through the surgery and chemo, but the long time afterwards when we have to watch and wait after we have put down our cancer-fighting tools. Finishing chemo was difficult, chemo had been my security blanket. I was in treatment for almost a year. In hindsight, the year of treatment was the easy part. The living in limbo between cancer tests, the feeling vulnerable, the knowledge that my world could potentially fall out from under me with every test made the first few years after treatment very difficult.
I felt better after three years, but I still felt vulnerable even after that. I'd learn of people who'd succumbed to recurrences at 4 and 5 years. I think after cancer we all feel some degree of vulnerability for a long time, maybe forever.
After I finished treatrment, I didn't want to go right back into clinical nursing. I'd been in hospitals and doctors offices so much, I wanted a break from the medical environment. I worked for a bit in an assisted living facility (around lots of people who had made it to "old") and taught at a local college. I put all of my paychecks towards my medical bills. I started doing a lot of volunteer work. I delivered meals to the homebound elderly, I ran a soup kitchen, I started a service group at my church, I did free musical entertainment at nursing homes, I mowed elderly neighbors lawns and raked their leaves, I participated in our communities Christmas in September rehabbing houses for the poor. I'd done some of that before cancer, but now I did a lot more.
Volunteering did a lot of good things for me. It kept me busy and kept my mind off of cancer. It was good for me in that it entailed no real commitments; I had trouble making commitments after cancer as my future was so uncertain. Volunteer work also made me feel good as I was helping others in need, meeting great people and getting my mind off of myself. I had a great need to give back; I had been given so much by so many people through my own tough time. I had a great need to make my life purposeful, I think I needed to feel worthy of my survival, to be deserving of it.
I had actually been struggling with purpose before my cancer diagnosis. I was thinking of a career change maybe, a new direction. The whole mid-life time for reflection and reassessment, the need to make sure my life counted, that I was fulfilling my purpose in life, doing what I was meant to do. I think maybe all of us get to that point. About that time The Purpose Driven Life, Pathways to Purpose and lots of similar books were bestsellers in bookstores. Maybe us baby boomers were all hitting middle age and wanting to make sure our lives counted, that we were doing something meaningful with our lives.
Surviving cancer made me obsessed with a need to find purpose in my life, though. I'd seen so many lose the battle. I'd been told I was not going to survive and I had, at least for awhile. I went through a phase where everything I did had to have meaning and be important, I didn't want to waste any of the time I had been given.
But I wouldn't volunteer in the cancer community. Even when I was asked to talk to someone newly diagnosed with cancer I couldn't do it.
Sunday, September 28, 2008
putt putt
Perception changes when life is threatened. I liken it to getting your first pair of glasses- your moments are a blur and then, all of a sudden, clarity. At least, this has been my experience. I have no choice but to abandon past and future and simply accept the sharp, clear edges of what has been placed in front of me. The present.
My past is another person, another life. My future is so uncertain I can't even fathom it. Now "going through the motions" attains a whole new meaning: every sense, every small minute function of the body and mind is acknowledged and felt- savored, even- rather than abandoned.
just little things
the miniature matters.
Church Sunday
Our Cowboys stunk up the field today (Run the Ball); it has been a bad year, my teams aren’t doing so well, (WSSU, SMU, and the Cowboys).
Visited the church of my brother-in-law and sister-in-law which was a good visit I stayed alert for the whole service. If I have one complaint that is everyone wanting to shake hands I don’t do a lot of that b/c I don’t want to have to deal with all the germs people are caring this time of year. I hope people don’t take it personally if I don’t hug or shake their hands I am just trying to stay out of the SPA (hospital)
Visited the church of my brother-in-law and sister-in-law which was a good visit I stayed alert for the whole service. If I have one complaint that is everyone wanting to shake hands I don’t do a lot of that b/c I don’t want to have to deal with all the germs people are caring this time of year. I hope people don’t take it personally if I don’t hug or shake their hands I am just trying to stay out of the SPA (hospital)
Saturday, September 27, 2008
The L'Oreal Paris Hope Necklace
Simply Stunning.
The L'Oreal Paris Hope Necklace is a simple way for women everywhere to visibly and tangibly help in the fight against one of the most deadly women's cancers.
The necklace was designed by 2008 Swarovski Award for Accessory Design recipient Philip Crangi and features a double eternity ring design of cubic zirconia set in sterling silver.
One ring is worn for remembrance and one ring is worn as a symbol of hope for the future.
The two eternity rings are free floating and suspended from an 18" rolo link chain. Each ring is comprised of 21 channel set, 2mm brilliant cubic zirconias.
This necklace normally retails for $99 but is being offered for only $29.95 (plus $5.95 s&h) to support ongoing research to defeat this dreadful disease. Net profits (five dollars per sale) will benefit the Ovarian Cancer Research Fund.
L'Oreal Paris has proudly supported the Ovarian Cancer Research Fund since 1997 and has helped to raise over $14 million to find life-saving research. For more information, visit http://www.lorealcolorofhope.com/
Friday, September 26, 2008
Attorney/Ovarian Cancer Survivor gets probation and is suspended for Contempt for refusing to provide documentation from her doctor.
Attorney/Ovarian Cancer Survivor gets probation and is suspended for Contempt for refusing to provide documentation from her doctor.
She contended that her tardiness was largely the product of medical issues stemming from ovarian cancer; the "contempt," she said, was only the typical back-and-forth between an attorney and a judge. She was guilty only of "disagreeing with a judge."
Pollack called herself "a whistle-blower who defended whistle-blowers," who was now the subject of a broad, illegal retaliatory scheme.
"The court proceeding today could only be described as criminal," Pollack said. "Am I not a whistle-blower, judge? Am I not a whistle-blower?"
"You may be the world's best whistle-blower," Ross answered, "but it isn't relevant."
The judge ordered two years' probation and a 45-day suspension, but declined to fine Pollack.
Kellman could not be reached for comment.
Assistant U.S. Attorney Monica Ryan represented the prosecution. She declined to comment.
Asked outside the courtroom if she intended to appeal, Pollack answered, "Yes, absolutely -- the entire thing."
Ruth was diagnosed in 2003 with Ovarian Cancer. She suffers from lymphedema in both legs and feet which from time to time requires that she rest and elevate her legs to recover. Ruth is a civil rights attorney and have been a trial lawyer for 25 years.
Ruth has had a number of male judges demand that she supply them with a "note" from her doctor explaining why she need a day of rest during a multi week trial, an adjournment of a conference due to the sudden swelling of her legs and feet, etc.
Ruth has had her primary care doctor take time from her busy schedule to prepare such letters through the years.
Sadly, her word as an attorney and officer of the court is not good enough.
Ruth refused one judge, insulted and appalled at the cruelty of this requirement. She decided to take a stand so that others like her would be treated with the respect they are due.
She contended that her tardiness was largely the product of medical issues stemming from ovarian cancer; the "contempt," she said, was only the typical back-and-forth between an attorney and a judge. She was guilty only of "disagreeing with a judge."
Pollack called herself "a whistle-blower who defended whistle-blowers," who was now the subject of a broad, illegal retaliatory scheme.
"The court proceeding today could only be described as criminal," Pollack said. "Am I not a whistle-blower, judge? Am I not a whistle-blower?"
"You may be the world's best whistle-blower," Ross answered, "but it isn't relevant."
The judge ordered two years' probation and a 45-day suspension, but declined to fine Pollack.
Kellman could not be reached for comment.
Assistant U.S. Attorney Monica Ryan represented the prosecution. She declined to comment.
Asked outside the courtroom if she intended to appeal, Pollack answered, "Yes, absolutely -- the entire thing."
Ruth was diagnosed in 2003 with Ovarian Cancer. She suffers from lymphedema in both legs and feet which from time to time requires that she rest and elevate her legs to recover. Ruth is a civil rights attorney and have been a trial lawyer for 25 years.
Ruth has had a number of male judges demand that she supply them with a "note" from her doctor explaining why she need a day of rest during a multi week trial, an adjournment of a conference due to the sudden swelling of her legs and feet, etc.
Ruth has had her primary care doctor take time from her busy schedule to prepare such letters through the years.
Sadly, her word as an attorney and officer of the court is not good enough.
Ruth refused one judge, insulted and appalled at the cruelty of this requirement. She decided to take a stand so that others like her would be treated with the respect they are due.
gonna work it on out
The great thing about cancer is that the pharmacists know it's tough-times u.s.a for you, and subsequently send you home with enough painkillers and anti-anxiety/depressants that even wall street would be jealous. Suffice to say it keeps one adequately hammered.
The thing is, 95% of the time I'm sad and self-medicating these days isn't the fact that I have cancer... it's the same shit that's always made me a sad pathetic mess.
People who disappoint you before Cancer will still disappoint you after you have Cancer.
The things that hurt you before Cancer will still hurt you after Cancer.
The friends that listen to you bitch about your boy troubles will stick around to listen to you bitch about chemo farts, but you'd be kidding yourself if you think relationships will change and people will magically love you once you get some weird fatal disease. I know you've fantasized about it. Don't lie.
cancer girl still has the same achilles' heel as regular girl...
except now she has better drugs.
Thursday, September 25, 2008
BEER: HITACHINO GINGER/DAMNATION JERABOAMS
BEER UPDATE!
We have just recieved 8 cases of HITACHINO NEST GINGER in 12 oz. bottles. There's not alot of it around, so if you're looking for Hitachino, Healthy Spirits is the place to go. We currently stock every Hitachino beer available, and will continue to bring them in as they show up.
ALSO:
RUSSIAN RIVER DAMNATION in JEROBOAMS (3L)!!!
We are going to try to keep these in consistently, but they are not always available. At the moment, we have a few on hand. If you are interested, the best thing to do is call and reserve one.
Cheers!
-dave
I saved $5.00 today!
I went for my bi-weekly triathlon at the City of Hope this afternoon - blood draw, chest x-ray and consultation. I even added a little distance to the event by parking my car in the regular patient parking lot instead of using the valet service.
Today's trek from the parking lot to the check-in center was the sweetest little walk I've taken in weeks. And wanna' know the best part? I saved the $5.00 valet fee.
Since my brother and niece, both Strothers, were visiting this last week, I've been reflecting a lot about what defines our family. The first thing on my list is that it will practically kill a Strother to spend more money than is necessary. For example, I broke down and bought a lemon a couple of weeks ago, and I'm still in recovery mode. (I'm hoping that the lemons in our back yard will be ripe soon.) Thank God that $5.00 valet charge is no longer on the "necessary" list.
Dr. Forman and I looked at today's chest x-ray and compared it to the one from two weeks ago. At that point, we concluded that the left lung was not improving. Today we decided that my left lung is "clearing," but still has some work to do. And my miserable, raspy cough is still going strong. But, hey, I walked from the parking lot, so we're definitely moving in the right direction.
The thing that's moving in the wrong direction again is my weight. I'm down three pounds from two weeks ago. How can this be? You should see the way that I shamelessly pack away food. You should have seen the way I got up the morning after the wedding and polished off a huge 8" wedge of left-over butter cream frostinged cake. Well, maybe you shouldn't have seen it - definitely not a pretty picture. I was smashing it into my mouth like a bride and groom at a wedding.
I could go on and on with stories of my gluttony. I'm consuming the same hefty amount of daily calories that I was when I was packing on pounds, but since my activity level has gone from zero to 60, I must be in fast burning mode.
During my wait at CoH, I got to catch up with another patient who I hadn't seen for several months. She had a donor stem cell transplant in January and bounced back almost immediately, but it turns out that her aggressive acute myeloid leukemia (AML) returned ten weeks after the transplant. She had another transplant in April (same perfect-match donor), is now in remission and looks fabulous. She was complaining about the bags under her eyes, which I couldn't see at all. And I'm sure those have more to do with life with a sleepless two-year-old daughter than chemo or cancer. She was beautiful and energetic and planning her daughter's second birthday party with 75 guests.
All I can say is, "Wow!" And did I mention that I saved $5.00 today?
Today's trek from the parking lot to the check-in center was the sweetest little walk I've taken in weeks. And wanna' know the best part? I saved the $5.00 valet fee.
Since my brother and niece, both Strothers, were visiting this last week, I've been reflecting a lot about what defines our family. The first thing on my list is that it will practically kill a Strother to spend more money than is necessary. For example, I broke down and bought a lemon a couple of weeks ago, and I'm still in recovery mode. (I'm hoping that the lemons in our back yard will be ripe soon.) Thank God that $5.00 valet charge is no longer on the "necessary" list.
Dr. Forman and I looked at today's chest x-ray and compared it to the one from two weeks ago. At that point, we concluded that the left lung was not improving. Today we decided that my left lung is "clearing," but still has some work to do. And my miserable, raspy cough is still going strong. But, hey, I walked from the parking lot, so we're definitely moving in the right direction.
The thing that's moving in the wrong direction again is my weight. I'm down three pounds from two weeks ago. How can this be? You should see the way that I shamelessly pack away food. You should have seen the way I got up the morning after the wedding and polished off a huge 8" wedge of left-over butter cream frostinged cake. Well, maybe you shouldn't have seen it - definitely not a pretty picture. I was smashing it into my mouth like a bride and groom at a wedding.
I could go on and on with stories of my gluttony. I'm consuming the same hefty amount of daily calories that I was when I was packing on pounds, but since my activity level has gone from zero to 60, I must be in fast burning mode.
During my wait at CoH, I got to catch up with another patient who I hadn't seen for several months. She had a donor stem cell transplant in January and bounced back almost immediately, but it turns out that her aggressive acute myeloid leukemia (AML) returned ten weeks after the transplant. She had another transplant in April (same perfect-match donor), is now in remission and looks fabulous. She was complaining about the bags under her eyes, which I couldn't see at all. And I'm sure those have more to do with life with a sleepless two-year-old daughter than chemo or cancer. She was beautiful and energetic and planning her daughter's second birthday party with 75 guests.
All I can say is, "Wow!" And did I mention that I saved $5.00 today?
routine Thursday
Nothing new, this is the worst part of the year for transplant recipients that are naturally immune suppressed after receiving their life saving transplants. The girls are sick and Raegan being in school has geometrically increased my germ pool from what it once was when both girls were in daycare only. I hope I don’t catch anything that they will be bringing home my goal is to have no more SPA (hospital) stays for the rest of the year.
Stay away from Supergirl
On Tuesday, WCK accidentally brought home the wrong artwork from preschool. The picture she brought home actually belonged to a girl I'll call "Supergirl". We knew that it belonged to Supergirl, because she had clearly written HER OWN NAME across the top of the paper. In addition, she'd colored everything on the page very neatly inside the lines.
Jay and I stared at this paper in wonder. We could not believe someone in WCK's class could write her own name. Is this the norm? WCK will usually make one teeny mark on a piece of paper and claim that it's a tree, or the letter A, or a kitty, or a dinosaur. Some days she acts like she doesn't even know her own name. "My name is Mr. Stinky Feet," she'll tell us. (Other days, her name could be Pooh Bear or Owl or T-Rex)
This morning when I dropped off WCK, I mentioned to the teacher that we had Supergirl's artwork in the backpack. "You know," I added, "the Supergirl who can WRITE HER OWN NAME."
The teacher explained that Supergirl is much older than the rest of the children. She must have a birthday right after the Aug. 1 cutoff. This had me feeling much better, until I realized that I'm going to have to keep WCK away from Supergirl in the years to come. You know, Supergirl is going to be the first one in her class who can drive all of her classmates around in a car, or buy tickets to R-rated movies for everybody, or be the designated beer-buyer in college.
Now that I think about it, several of my friends in high school had fall birthdays. Maybe that's why I hung out with them.
Jay and I stared at this paper in wonder. We could not believe someone in WCK's class could write her own name. Is this the norm? WCK will usually make one teeny mark on a piece of paper and claim that it's a tree, or the letter A, or a kitty, or a dinosaur. Some days she acts like she doesn't even know her own name. "My name is Mr. Stinky Feet," she'll tell us. (Other days, her name could be Pooh Bear or Owl or T-Rex)
This morning when I dropped off WCK, I mentioned to the teacher that we had Supergirl's artwork in the backpack. "You know," I added, "the Supergirl who can WRITE HER OWN NAME."
The teacher explained that Supergirl is much older than the rest of the children. She must have a birthday right after the Aug. 1 cutoff. This had me feeling much better, until I realized that I'm going to have to keep WCK away from Supergirl in the years to come. You know, Supergirl is going to be the first one in her class who can drive all of her classmates around in a car, or buy tickets to R-rated movies for everybody, or be the designated beer-buyer in college.
Now that I think about it, several of my friends in high school had fall birthdays. Maybe that's why I hung out with them.
Cancer stem cells in solid tumours: a review
Cancer stem cells in solid tumours: accumulating evidence and unresolved questions. Jane E Visvader & Geoffrey J Lindeman, Nature Reviews Cancer 2008(Oct); 8(10): 755-68. Abstract:
Solid tumours are an enormous cancer burden and a major therapeutic challenge. The cancer stem cell (CSC) hypothesis provides an attractive cellular mechanism to account for the therapeutic refractoriness and dormant behaviour exhibited by many of these tumours. There is increasing evidence that diverse solid tumours are hierarchically organized and sustained by a distinct subpopulation of CSCs. Direct evidence for the CSC hypothesis has recently emerged from mouse models of epithelial tumorigenesis, although alternative models of heterogeneity also seem to apply. The clinical relevance of CSCs remains a fundamental issue but preliminary findings indicate that specific targeting may be possible.This review is currently available free as a special feature to registered visitors to Nature Reviews Cancer. Registration is also free.
FYI
Never youtube search your specific cancer at 2 in the morning. You will get memorials and it will scare the bejeesus out of you. And why are they all dubbed over with Celine Dion?
I would really, really like for the cancer not to kill me too soon. It can kill me 40 years from now. I'd be totally cool with that. Is that too much to ask?
I would really, really like for the cancer not to kill me too soon. It can kill me 40 years from now. I'd be totally cool with that. Is that too much to ask?
Wednesday, September 24, 2008
The Cancer Community
I tried at one point to put cancer behind me and to leave the cancer community and world behind, but it was kind of strange. My perspectives had changed in some ways that only another cancer survivor could understand. I couldn't deny the impact my cancer experience and the living in cancer limbo had had on who I was.
Almost four years out from my diagnosis I joined a support group for the first time. I actually felt a reassurance in being with others who struggled with cancer, even those who would not survive, who knew they were terminally ill. I thought terminal cancer patients would make me feel vulnerable, but they didn't. They made me feel at home, understood, we were warriors in a fight against our common enemy. We lit candles for each one in the group who had died to signify their presence and our memories of them. The group was honest. They understood my reality. They went to each other's garden parties and funerals, they supported each other. They didn't spend much time crying or feeling sorry for themselves. They compared notes on what helped with chemo side effects, cheered each other on when they'd reached a milestone, compared their experiences with oncologists.
I didn't stay in the group long as I felt my membership represented my weakness in needing support. In hindsight, I should have stayed. Cancer has made me understand we all need community. Those of us with a cancer diagnosis or history are reassured by others who share our struggle and our history. We are family in a sense.
I don't like the name "support group", somehow the name conger's up images of people who are weak and can't take it and want shoulders to cry on. Cancer survivor groups should instead be elite clubs for only those of us who have battled or are battling cancer. Kind of like a VFW, you'd have to apply for membership and meet the cancer diagnosis requirements to be accepted. We'd have halls and dances and parties and offer services and be a resource for those newly entering our community. We are actually kind of the same, we are not veterans of a foreign war, but of the cancer war. And just like veterans find a need for community when they come back from war, those of us who have fought cancer need to be around our fellow warriors sometimes.
Though I left support group, I in the end decided to stay in the cancer community. It is where I belong. It is where I am needed, where I can make a difference. It is where I feel at home. I communicate now with cancer patients every day. It's what I want to do now. I don't want to put cancer behind me and to not think of it anymore. It's part of who I am.
Almost four years out from my diagnosis I joined a support group for the first time. I actually felt a reassurance in being with others who struggled with cancer, even those who would not survive, who knew they were terminally ill. I thought terminal cancer patients would make me feel vulnerable, but they didn't. They made me feel at home, understood, we were warriors in a fight against our common enemy. We lit candles for each one in the group who had died to signify their presence and our memories of them. The group was honest. They understood my reality. They went to each other's garden parties and funerals, they supported each other. They didn't spend much time crying or feeling sorry for themselves. They compared notes on what helped with chemo side effects, cheered each other on when they'd reached a milestone, compared their experiences with oncologists.
I didn't stay in the group long as I felt my membership represented my weakness in needing support. In hindsight, I should have stayed. Cancer has made me understand we all need community. Those of us with a cancer diagnosis or history are reassured by others who share our struggle and our history. We are family in a sense.
I don't like the name "support group", somehow the name conger's up images of people who are weak and can't take it and want shoulders to cry on. Cancer survivor groups should instead be elite clubs for only those of us who have battled or are battling cancer. Kind of like a VFW, you'd have to apply for membership and meet the cancer diagnosis requirements to be accepted. We'd have halls and dances and parties and offer services and be a resource for those newly entering our community. We are actually kind of the same, we are not veterans of a foreign war, but of the cancer war. And just like veterans find a need for community when they come back from war, those of us who have fought cancer need to be around our fellow warriors sometimes.
Though I left support group, I in the end decided to stay in the cancer community. It is where I belong. It is where I am needed, where I can make a difference. It is where I feel at home. I communicate now with cancer patients every day. It's what I want to do now. I don't want to put cancer behind me and to not think of it anymore. It's part of who I am.
Adventures of Cancer Girl
The MRI last night was hell. Imagine being stuck in a tube with aliens bombing it from the outside and robots screaming in your ear for an hour. At least, that's what I imagined with my eyes closed.
A friend recently called me "cancer girl" and suggested we hang out soon, "assuming you don't die of cancer". I know he was joking, but I was offended (please do not call me this). Cancer girl. Cancer girl... sounds like a superhero name, no?
I began thinking of my favorite comic book characters from childhood; mostly boys I thought were attractive (gambit, tuxedo mask, mmm) and then BAM! Nostalgia hit me like the proverbial H-bomb. I was obsessed with Tank Girl comics in my pre-pubescence and early teens. I would draw her incessantly, substituting the characters for my friends. In fact, my fashion illustration croquis today are totally reflective of this.
I saw in Tank Girl what I wanted to be as a grown-up: an untouchably tough nonsensical kick ass punk rocker ready to annihilate anything that stood in her way who still remained undeniably cute (remember camp koala?).
I wouldn't quite call myself this girl now. I went through my "I hate the world" phase back in high school and left it there. However, when it comes to this tumor, I feel some of this old idealism bubbling back up. The fighting spirit, if you will.
I completely see it when I look in the mirror: buzzed head, body scared, bruised, bloodied and bandaged from all of the blood draws, tank top stained from my inability to eat otter pops with the necessary au fait.
Enter Cancer Girl.
A friend recently called me "cancer girl" and suggested we hang out soon, "assuming you don't die of cancer". I know he was joking, but I was offended (please do not call me this). Cancer girl. Cancer girl... sounds like a superhero name, no?
I began thinking of my favorite comic book characters from childhood; mostly boys I thought were attractive (gambit, tuxedo mask, mmm) and then BAM! Nostalgia hit me like the proverbial H-bomb. I was obsessed with Tank Girl comics in my pre-pubescence and early teens. I would draw her incessantly, substituting the characters for my friends. In fact, my fashion illustration croquis today are totally reflective of this.
I saw in Tank Girl what I wanted to be as a grown-up: an untouchably tough nonsensical kick ass punk rocker ready to annihilate anything that stood in her way who still remained undeniably cute (remember camp koala?).
I wouldn't quite call myself this girl now. I went through my "I hate the world" phase back in high school and left it there. However, when it comes to this tumor, I feel some of this old idealism bubbling back up. The fighting spirit, if you will.
I completely see it when I look in the mirror: buzzed head, body scared, bruised, bloodied and bandaged from all of the blood draws, tank top stained from my inability to eat otter pops with the necessary au fait.
Enter Cancer Girl.
There's a Hole in my Chest, dear Liza, dear Liza
The biopsy went okay yesterday. The radiologist used three different sized needles to try to get a tiny speck of flesh from me (14, 16, and 18 gauge). And scissors--she used scissors to cut open a hole so the needle would go in easier. Luckily, I didn't feel a thing after the local was administered (the local, by the way, stung like a mother, but oh well). She kept asking Henry if he was okay or if he was going to pass out, and I couldn't understand why, but then I realized that he could probably see the hole in my chest and I couldn't. Not that it was a big hole, but I guess the idea of using scissors on my body could freak some people out. But not Henry--he's brave.
I should get the results in a few days, but I'm still confident that it's just fat necrosis.
I should get the results in a few days, but I'm still confident that it's just fat necrosis.
Talking makes me tired
Isn't that strange?
I have so much to say and I want to be engaged, but delivering long-winded (and even short-winded) stories or explanations still wears me out. While getting ready for the Saturday wedding, simple questions like "Where does this platter go?" could make me weak in the knees.
Yesterday, 26 third and fourth grade students from the alternative Sequoyah School in Pasadena came to our yard to learn about the food exchange group and to pick fruit. We gathered under the massive avocado tree while I talked and answered questions about growing and sharing for 15 minutes. My coughing became out of control and I was soon exhausted. I was relieved to let the future gardeners scatter like squirrels to pick figs, avocados and persimmons.
When my loving brother recognized this tiring-talking phenomenon, he asked George to give the toast at his wedding. This morning I woke up filled with regret that I didn't give a toast to him and his beautiful bride Bonnie. The top of his wedding cake is in our freezer, so I'll have to wait until their one-year anniversary to make that toast.
Seems like my turn at being taciturn is just fine with our three cats. With them, the less yakking and yapping the better. Puss (the cat I adopted from my friend Bob) and I have become especially close over the last few days because I slept in "her bedroom" while house guests slept in the king-sized bed. Puss made a daily ritual of grooming my head of hair. She started by licking my curls with her tongue. Then she wet her paw and stroked my hair. She finished with gentle nibbles on my scalp. I never had to say a word.
And I haven't had to wash my hair for days.
I have so much to say and I want to be engaged, but delivering long-winded (and even short-winded) stories or explanations still wears me out. While getting ready for the Saturday wedding, simple questions like "Where does this platter go?" could make me weak in the knees.
Yesterday, 26 third and fourth grade students from the alternative Sequoyah School in Pasadena came to our yard to learn about the food exchange group and to pick fruit. We gathered under the massive avocado tree while I talked and answered questions about growing and sharing for 15 minutes. My coughing became out of control and I was soon exhausted. I was relieved to let the future gardeners scatter like squirrels to pick figs, avocados and persimmons.
When my loving brother recognized this tiring-talking phenomenon, he asked George to give the toast at his wedding. This morning I woke up filled with regret that I didn't give a toast to him and his beautiful bride Bonnie. The top of his wedding cake is in our freezer, so I'll have to wait until their one-year anniversary to make that toast.
Seems like my turn at being taciturn is just fine with our three cats. With them, the less yakking and yapping the better. Puss (the cat I adopted from my friend Bob) and I have become especially close over the last few days because I slept in "her bedroom" while house guests slept in the king-sized bed. Puss made a daily ritual of grooming my head of hair. She started by licking my curls with her tongue. Then she wet her paw and stroked my hair. She finished with gentle nibbles on my scalp. I never had to say a word.
And I haven't had to wash my hair for days.
Tuesday, September 23, 2008
into the fire
You know that Tom Waits song Yesterday is Here? The foreboding lyric "all our dreams come true" has been stuck in my thoughts. The idea that our conscious or subconscious dreams and nightmares will manifest, absolutely. The more we think about them, the more real dreams become.
I've always been terrified of cancer, the idea of something eating you from the inside. In high school, when my lymph node swelled up to golf ball-proportions, I was sure it was some kind of lymphoma. The nightmare was that cancer would strike me early, for some inexplicable reason. Cancer was up there with my "top fears", only preceding being eaten by a large predatory animal or getting stuck in an Egyptian sarcophagus as it crumbles down on me (major claustrophobia). Come to think of it, watching the Discovery Channel at the tender age of four was not such a baby genius idea.
be careful what you dream of?
or live like you dream?
"He was weary of himself, of cold thoughts and intellectual dreams. Life a poem! Not when you perpetually went around inventing your life instead of living it. How meaningless it was, empty, empty, empty. This hunting for yourself, slyly observing your own tracks- in a circle, of course; this pretending to throw yourself into the stream of life and then at the same time sitting and angling for yourself and fishing yourself up in some peculiar disguise! If only it would seize him: life, love, passion-- so that he wouldn't be able to invent it, but so that it would invent him."
-Niels Lhyne
What will my dreams and nightmares invent in me? I'm living them both. It is undeniably better to live through what you fear most, in your darkest imagination, because it becomes human experience.
Experience is the catalyst that takes us from smoke to fire.
And I will only accept fire.
Comparison of Abdominal Donor-Site Morbidity of SIEA, DIEP, and Muscle-Sparing Free TRAM Flaps for Breast Reconstruction.
A study published in September's edition of Plastic and Reconstructive Surgery examined the abdominal recovery rates and patient satisfaction after breast reconstruction with different abdominal flaps: the DIEP, SIEA and muscle-sparing free TRAM. The SIEA (superficial inferior epigastric artery) flap is the least invasive method of lower abdominal flap breast reconstruction; however, there are no published reports comparing the donor-site morbidity of SIEA flaps to that of TRAM (transverse rectus abdominis myocutaneous) flaps or DIEP (deep inferior epigastric artery perforator) flaps. A description of how these abdominal flap breast reconstruction procedures differ is available here.
The authors of the study used a 12-question patient survey and retrospective chart review to compare donor-site (abdominal) function, pain, and aesthetics in 179 patients who had unilateral or bilateral breast reconstruction with 47 SIEA flaps, 49 DIEP flaps, and 136 muscle-sparing free TRAM flaps during a 5-year period.
Unilateral SIEA flap patients scored higher on 10 of the 12 survey questions compared with unilateral muscle-sparing TRAM flap patients, including reporting significantly better postoperative lifting ability. Abdominal pain also seemed to lessen sooner in the unilateral SIEA group (though this was not statistically significant) when compared to the muscle-sparing free TRAM group. Bilateral breast reconstruction patients with at least one SIEA flap scored higher on all 12 survey questions, including reporting significantly better ability to get out of bed (sit-up motion) compared with patients with bilateral muscle-sparing TRAM or DIEP flaps. The greatest benefit of the SIEA flap occurs in cases of bilateral breast reconstruction where at least one of the flaps used is an SIEA flap. There were no differences between patients that had undergone reconstruction of only 1 breast (unilateral) with an SIEA flap versus those that had had a DIEP flap.
The authors' conclusions were that breast reconstruction using SIEA flaps results in significantly less abdominal donor-site issues than DIEP flaps in bilateral cases and free muscle-sparing TRAM flaps in both unilateral and bilateral cases. The authors felt that these differences were "clinically relevant" and recommended that SIEA flaps be used whenever possible in preference to DIEP or muscle-sparing free TRAM flaps for breast reconstruction.
These findings are not surprising to me at all. They make a lot of sense considering that the SIEA flap procedure requires the least amount of surgical dissection while the muscle-sparing free TRAM is the most invasive (due to removal of some of the rectus abdominis muscle). One would expect recovery to be easiest in patients that undergo the least invasive surgery and this is essentially what this study has shown. Interestingly though, in patients undergoing unilateral breast reconstruction (one breast only), DIEP flaps are just as good as SIEA flaps in terms of recovery and patient satisfaction even though the DIEP procedure is slightly more invasive.
******
Dr Chrysopoulo is a board certified breast reconstruction surgeon specializing in breast reconstruction surgery after mastectomy for breast cancer. He and his partners perform hundreds of microsurgical breast reconstructions with perforator flaps each year including the DIEP flap procedure. PRMA Plastic Surgery, San Antonio, Texas. Toll Free: (800) 692-5565. Keep up to date with the latest breast reconstruction news by following Dr Chrysopoulo's Breast Cancer Reconstruction Blog.
******
The authors of the study used a 12-question patient survey and retrospective chart review to compare donor-site (abdominal) function, pain, and aesthetics in 179 patients who had unilateral or bilateral breast reconstruction with 47 SIEA flaps, 49 DIEP flaps, and 136 muscle-sparing free TRAM flaps during a 5-year period.
Unilateral SIEA flap patients scored higher on 10 of the 12 survey questions compared with unilateral muscle-sparing TRAM flap patients, including reporting significantly better postoperative lifting ability. Abdominal pain also seemed to lessen sooner in the unilateral SIEA group (though this was not statistically significant) when compared to the muscle-sparing free TRAM group. Bilateral breast reconstruction patients with at least one SIEA flap scored higher on all 12 survey questions, including reporting significantly better ability to get out of bed (sit-up motion) compared with patients with bilateral muscle-sparing TRAM or DIEP flaps. The greatest benefit of the SIEA flap occurs in cases of bilateral breast reconstruction where at least one of the flaps used is an SIEA flap. There were no differences between patients that had undergone reconstruction of only 1 breast (unilateral) with an SIEA flap versus those that had had a DIEP flap.
The authors' conclusions were that breast reconstruction using SIEA flaps results in significantly less abdominal donor-site issues than DIEP flaps in bilateral cases and free muscle-sparing TRAM flaps in both unilateral and bilateral cases. The authors felt that these differences were "clinically relevant" and recommended that SIEA flaps be used whenever possible in preference to DIEP or muscle-sparing free TRAM flaps for breast reconstruction.
These findings are not surprising to me at all. They make a lot of sense considering that the SIEA flap procedure requires the least amount of surgical dissection while the muscle-sparing free TRAM is the most invasive (due to removal of some of the rectus abdominis muscle). One would expect recovery to be easiest in patients that undergo the least invasive surgery and this is essentially what this study has shown. Interestingly though, in patients undergoing unilateral breast reconstruction (one breast only), DIEP flaps are just as good as SIEA flaps in terms of recovery and patient satisfaction even though the DIEP procedure is slightly more invasive.
******
Dr Chrysopoulo is a board certified breast reconstruction surgeon specializing in breast reconstruction surgery after mastectomy for breast cancer. He and his partners perform hundreds of microsurgical breast reconstructions with perforator flaps each year including the DIEP flap procedure. PRMA Plastic Surgery, San Antonio, Texas. Toll Free: (800) 692-5565. Keep up to date with the latest breast reconstruction news by following Dr Chrysopoulo's Breast Cancer Reconstruction Blog.
******
Update: the Search for Organic Whey Powder
Bovine growth hormones: Does she or doesn't she?
I wrote quite a while back about my search for protein powder without soy or rBGH--recombinant bovine growth hormone. I finally found Jay Robb Unflavored Whey Protein Isolate from non-hormone-ated cows and sent off for it. Then I got Whole Foods to order it for me. I recommend it. If anyone knows of a better whey, let me know. It would be "purer" if Jay Robb could assure us that the cows were fed grains and grasses that were not treated with pesticides. There's protein powder from hemp, but I can't stomach the color, green. I just found on line organic brown rice protein powder. I haven't tried it.
A note about soy: It's a great bean, but since it acts like a weak estrogen, we Cancer Bitches with estrogen-sensitive tumors try to avoid it. Therefore, it's annoying to go to a coffee place and ask if they have organic milk, and they say, Yes, we have organic soy. That's why I usually bring my own organic milk in those little boxes. For a while Starbucks had organic (whole) milk, but because of low demand, stopped offering it. In my general environs, you can find organic milk at Dollop and Julius Meinl.
Bleh.
M-spike is up to 1.7. Not a huge deal, but it was 1.5 in July and 1.6 in August, so it is very slowly clawing its way back up. My IgG is back above 1600, too, which is back above normal. I'm still not going back on the dex this month, though, even though I obviously need it to keep Spike from crawling upward.
Bleh.
Bleh.
Saying Goodbye to Summer
Goodbye fresh tomatoes and basil.
Farewell peaches and plums.
Hello squash and pumpkins.
Welcome soups and stews.
Summer is fading. Fall is here. Find out more at Open Mouth, Insert Fork.
Farewell peaches and plums.
Hello squash and pumpkins.
Welcome soups and stews.
Summer is fading. Fall is here. Find out more at Open Mouth, Insert Fork.
5 minute fantasy
A couple of Sundays ago, I participated in a writing workshop with my breast cancer survivor/former co-worker support/writing group. It was a fantastic, inspiring energizing experience.
I wanted to share one of my more light-hearted pieces from that day.
I wanted to share one of my more light-hearted pieces from that day.
The exercise: Choose an object that is important to you (I brought in a necklace, designed by my friend Jacqueline (who also designs clothing for women who have had mastectomies). The necklace has a pendant that says “Rebel” (it’s a beer cap) and eight beads. Four are red and one is white, representing the one woman in eight who will get breast cancer.
We were asked to write a description, a memory, a fantasy and a monologue in the object’s voice. Each exercise lasted five minutes.
This is my fantasy:
I am not a rebel by nature. Perhaps it’s my birth order but I have always been a good girl, even through my teenage rebellion and even when breaking the law.
But in my fantasies I am superhero in a beer cap necklace. A one-breasted warrior, wearing big boots and a really cool scarf (you can’t be a superhero without the right accessories. That’s where the confidence comes from when it lacks more internal origins).
I am a superhero who can command a room with my presence and make CEOs tremble with a furious glance from my piercing blue eyes.
I know how to right wrongs and rid the world of injustice and I pull it off – with time left over to finish the queen-sized blanket that’s been languishing in its basket for more than a year.
Monday, September 22, 2008
My Cancer and My Life
I have a lot I need to say here, so I am going to do a series of posts. The jest of it is how cancer has affected my life and my future and my dreams. My life's evolution on the cancer path.
My cancer journey has been very long and very difficult. Funny thing about being a long term survivor...I can't remember now what it felt like to have a life without cancer as an impending threat. I can't really remember a life before there was the cancer "elephant in the room".
I've survived a long time now, 7 years. You'd think I would feel "cured" and feel able to go back to my old life, my life that wasn't about cancer. Back to my old "before cancer" normal life. I think people who knew me before cancer assume that's how my life should be now. I should be the same person I used to be before cancer. After all, I've passed the 5 year mark. Cancer should be in my past, I should have moved on by now. Be the person I used to be.
But I'm not the same as I was before cancer. I can never go back to who I was before cancer. It's a universal truth those of us in the cancer community come to know and accept. Our old normal is gone. Cancer is a new part of our identity.
I feel a little less vulnerable now being a long term survivor. I feel a little safer. Cancer seems a more distant and not such an immediate threat. But I will probably never feel totally safe and invulnerable again. I will always be on guard for the bad and devastating thing that might happen. I am wiser. I am less naive. I know that at any moment the bottom can fall out of our lives. It happened to me once. I know to be ready. Cancer stole a certain innocence from me. I no longer expect life to be good, to be fair. I live in the cancer community, a place where unfairness reigns.
A woman at work recently heard my story. She was so amazed. That I had had a terrible cancer, that I had survived. And I recognized in her the me before my cancer diagnosis. The me who once heard cancer stories that belonged to someone else, stories that were distant, that didn't affect my life. I remembered when I was like her... I put money in the jar at the gas station for the person afflicted by a terrible cancer. The other person's family member, the other person with a cancer diagnosis. The other person with a terrible disease. Not me. I was on the outside of the cancer world then.
Now I know what it's like to be the person who's picture is on the jar at the gas station. To be one of the afflicted. To be the one circling the drain. I don't hold on to tightly to anything or anyone now. I know we may be asked to let go at any time...of everything, of everyone, of our all, of our world as we know it. I know I always need to be prepared for the unexpected.
But cancer has given me gifts, made my life richer and more meaningful. More profound. I never thought I would feel this way, but I wouldn't want to go back to my before cancer normal now, my before cancer life. I'll talk more about that in my next posts.
My cancer journey has been very long and very difficult. Funny thing about being a long term survivor...I can't remember now what it felt like to have a life without cancer as an impending threat. I can't really remember a life before there was the cancer "elephant in the room".
I've survived a long time now, 7 years. You'd think I would feel "cured" and feel able to go back to my old life, my life that wasn't about cancer. Back to my old "before cancer" normal life. I think people who knew me before cancer assume that's how my life should be now. I should be the same person I used to be before cancer. After all, I've passed the 5 year mark. Cancer should be in my past, I should have moved on by now. Be the person I used to be.
But I'm not the same as I was before cancer. I can never go back to who I was before cancer. It's a universal truth those of us in the cancer community come to know and accept. Our old normal is gone. Cancer is a new part of our identity.
I feel a little less vulnerable now being a long term survivor. I feel a little safer. Cancer seems a more distant and not such an immediate threat. But I will probably never feel totally safe and invulnerable again. I will always be on guard for the bad and devastating thing that might happen. I am wiser. I am less naive. I know that at any moment the bottom can fall out of our lives. It happened to me once. I know to be ready. Cancer stole a certain innocence from me. I no longer expect life to be good, to be fair. I live in the cancer community, a place where unfairness reigns.
A woman at work recently heard my story. She was so amazed. That I had had a terrible cancer, that I had survived. And I recognized in her the me before my cancer diagnosis. The me who once heard cancer stories that belonged to someone else, stories that were distant, that didn't affect my life. I remembered when I was like her... I put money in the jar at the gas station for the person afflicted by a terrible cancer. The other person's family member, the other person with a cancer diagnosis. The other person with a terrible disease. Not me. I was on the outside of the cancer world then.
Now I know what it's like to be the person who's picture is on the jar at the gas station. To be one of the afflicted. To be the one circling the drain. I don't hold on to tightly to anything or anyone now. I know we may be asked to let go at any time...of everything, of everyone, of our all, of our world as we know it. I know I always need to be prepared for the unexpected.
But cancer has given me gifts, made my life richer and more meaningful. More profound. I never thought I would feel this way, but I wouldn't want to go back to my before cancer normal now, my before cancer life. I'll talk more about that in my next posts.
Back in the Saddle
Ceci n'est pas une Cancer Bitch.
Friday I was riding my bike to French yoga at the Alliance Francaise. (It's yoga with instructions in French.) At the stoplight at Fullerton and Lincoln I heard my name. It was M, whom I hadn't seen since BC (before cancer). She was in her car next to me and said I looked great. (You could see my curls sticking out from under the helmet). I had some fliers with me for a fundraiser, Writers & Cartoonists for Obama. I gave her one.
That's not much for a lot of people, but it was more than I'd gone for two years. I felt I presented the picture of Absolute Recovery: on a bike, going to yoga, handing out a flier for something not having to do with cancer. I ended up riding my bike about 11 miles on Friday.
The next day we rode downtown to Obama headquarters to drop off more fliers. The place was mobbed. I got tired but I rallied. And every time I ride my bike in the city I feel I'm taking my life in my hands and imagine the irony, that people will tsk tsk and say: O, she had recovered from breast cancer and she was riding her bike, she was healthy and then boom! she was run over by a car.
The Candidates’ Cancer Plans
These are links to the presidential candidates' published cancer plans. Please take the time to read them!
Barack Obama's Cancer Plan
John McCain's Cancer Plan
Barack Obama's Cancer Plan
John McCain's Cancer Plan
Funny Cancer Thought of the Day
Nothing will take you out of wallowing in self pity faster than your kid vomiting deep-fried bananas and chocolate ice cream at 11:30 at night.
well, that's a relief
My ten year old son, to my spouse:
"You guys did a good job of bringing me up."
Sunday, September 21, 2008
self-portrait today:
Check out ma weeeave... ok it's not really a weave but I like calling it one. Long hair is difficult. Shit gets stuck in it. I went to a movie today and kept dropping popcorn in it. ugh.
Tomorrow I'll be at the hospital most of the day for bone scans. Let's cross our fingers that it hasn't spread. I wonder if bone scans are as inherently joyous as CT's? I do know that I have to get a shot beforehand that will make my skeleton glow, which is pretty rad.
I apologize if I am late with calls/texts these past couple of days- my phone has not been proper and won't show my missed calls. Sucks being away from you all <3
Check out ma weeeave... ok it's not really a weave but I like calling it one. Long hair is difficult. Shit gets stuck in it. I went to a movie today and kept dropping popcorn in it. ugh.
Tomorrow I'll be at the hospital most of the day for bone scans. Let's cross our fingers that it hasn't spread. I wonder if bone scans are as inherently joyous as CT's? I do know that I have to get a shot beforehand that will make my skeleton glow, which is pretty rad.
I apologize if I am late with calls/texts these past couple of days- my phone has not been proper and won't show my missed calls. Sucks being away from you all <3
Teal Tuesday, September 23rd, 2008. National Ovarian Cancer Awareness Day
Press Release---
For Immediate Release
Teal Tuesday, September 23rd, 2008. National Ovarian Cancer Awareness Day.
Khrissy Lupinacci from LI OCEANS Inc (Long Island Ovarian Cancer Education Advocacy Network & Support) launches a Nationwide Public Awareness Campaign calling September 23rd, the 3rd Tuesday of September “ Teal Tuesday”. Our goal is to promote public education and much needed awareness of the deadliest form of Gynecologic Cancer called Ovarian Cancer. Ovarian Cancer claims the lives of over 22,000 women each year, this year alone over 15,000 women will be diagnosed with this deadly disease.
Khrissy Lupinacci (a 6 year survivor of Ovarian Cancer and one of the founding members of LI OCEANS Inc) said, “September is National Ovarian Cancer Awareness month.” “ It is our hope that “ Teal Tuesday ” inspires millions of people to adopt this day to raise awareness of this deadly disease. “ We are in need of soldiers, it will take an army to fight this fight against Ovarian Cancer “ said Khrissy. “ We are in need of heros” our greatest asset in this fight against ovarian cancer is our caring and compassionate community at large.” We hope that individuals, busineses and corporations join us in our plight to save lives. “We ask for national and local partnerships to help execute this initiative and support this campaign, making the 3rd Tuesday of September “ Teal Tuesday”. We hope this campaign inspires individuals to join us in our fight and encourages grassroots activities within their own communities to “ think teal, talk teal, wear teal, save lives!
Saving lives, each and everyone of us has the power to save lives, to date there is not an effective nor 100 % accurate early detection test for Ovarian Cancer. We know that early detection can save lives, however, with the lack of an early screening test and lack of Ovarian Cancer Awareness, we are left with but one vital tool, our voice. Together we can educate one another and create much needed awareness. A Pap test does not detect Ovarian Cancer. You don’t need to be personally affected by Ovarian Cancer to help in the fight to educate, advocate and create awareness, you simply need to care. Educate yourself about the signs and symptons of Ovarian Cancer, call or visit your local or National Ovarian Cancer organization, arm yourself with education and awareness of the signs, symptoms and risk factors of the disease, spread the news.
Sadly the majority, 75 percent of women are diagnosed in the later stages of Ovarian Cancer; the five –year survival is only 30 percent.
LI OCEANS INC believes one is too many; we must educate and advocate so to eradicate this deadly disease. Please join us in saving lives.
We ask locally and nationally that others join us in our plight to create much needed awareness of this ruthless and relentless killer of women. On Tuesday September 23rd, please wear teal! Wear teal in honor of the thousands of beautiful women that are battling the disease, wear teal in memory of the precious lives of those who have lost their battle to this disease. Wear Teal to help raise public awareness of the often overlooked and unrecognized signs and symptoms of this disease. Wear Teal because you care about the thousands of Grandmothers, Mothers, Sisters and Daughters that will be diagnosed with Ovarian Cancer this year. Wear teal for the 22,000 women that will die from Ovarian Cancer this year. Wear teal, help save lives.
Teal Tuesday, the initiative to launch a national public awareness campaign to save hundreds, thousands of women from Ovarian Cancer. On September 23rd, Teal Tuesday please wear teal; tie teal ribbons or teal balloons within your community, place of business, office or front lawn. Encourage hospitals, businesses, companies, schools, churches, synagogues, restaurants, stores, corporations, government offices, employees and co-workers to wear teal. Contact newspapers, radio, and television. Encourage Members of Congress to participate & adopt this as an annual campaign. “ Our goal is that every woman is educated and made aware of the signs, symptoms and risk factors of Ovarian Cancer.” Said, Khrissy Lupinacci.
For Immediate Release
Teal Tuesday, September 23rd, 2008. National Ovarian Cancer Awareness Day.
Khrissy Lupinacci from LI OCEANS Inc (Long Island Ovarian Cancer Education Advocacy Network & Support) launches a Nationwide Public Awareness Campaign calling September 23rd, the 3rd Tuesday of September “ Teal Tuesday”. Our goal is to promote public education and much needed awareness of the deadliest form of Gynecologic Cancer called Ovarian Cancer. Ovarian Cancer claims the lives of over 22,000 women each year, this year alone over 15,000 women will be diagnosed with this deadly disease.
Khrissy Lupinacci (a 6 year survivor of Ovarian Cancer and one of the founding members of LI OCEANS Inc) said, “September is National Ovarian Cancer Awareness month.” “ It is our hope that “ Teal Tuesday ” inspires millions of people to adopt this day to raise awareness of this deadly disease. “ We are in need of soldiers, it will take an army to fight this fight against Ovarian Cancer “ said Khrissy. “ We are in need of heros” our greatest asset in this fight against ovarian cancer is our caring and compassionate community at large.” We hope that individuals, busineses and corporations join us in our plight to save lives. “We ask for national and local partnerships to help execute this initiative and support this campaign, making the 3rd Tuesday of September “ Teal Tuesday”. We hope this campaign inspires individuals to join us in our fight and encourages grassroots activities within their own communities to “ think teal, talk teal, wear teal, save lives!
Saving lives, each and everyone of us has the power to save lives, to date there is not an effective nor 100 % accurate early detection test for Ovarian Cancer. We know that early detection can save lives, however, with the lack of an early screening test and lack of Ovarian Cancer Awareness, we are left with but one vital tool, our voice. Together we can educate one another and create much needed awareness. A Pap test does not detect Ovarian Cancer. You don’t need to be personally affected by Ovarian Cancer to help in the fight to educate, advocate and create awareness, you simply need to care. Educate yourself about the signs and symptons of Ovarian Cancer, call or visit your local or National Ovarian Cancer organization, arm yourself with education and awareness of the signs, symptoms and risk factors of the disease, spread the news.
Sadly the majority, 75 percent of women are diagnosed in the later stages of Ovarian Cancer; the five –year survival is only 30 percent.
LI OCEANS INC believes one is too many; we must educate and advocate so to eradicate this deadly disease. Please join us in saving lives.
We ask locally and nationally that others join us in our plight to create much needed awareness of this ruthless and relentless killer of women. On Tuesday September 23rd, please wear teal! Wear teal in honor of the thousands of beautiful women that are battling the disease, wear teal in memory of the precious lives of those who have lost their battle to this disease. Wear Teal to help raise public awareness of the often overlooked and unrecognized signs and symptoms of this disease. Wear Teal because you care about the thousands of Grandmothers, Mothers, Sisters and Daughters that will be diagnosed with Ovarian Cancer this year. Wear teal for the 22,000 women that will die from Ovarian Cancer this year. Wear teal, help save lives.
Teal Tuesday, the initiative to launch a national public awareness campaign to save hundreds, thousands of women from Ovarian Cancer. On September 23rd, Teal Tuesday please wear teal; tie teal ribbons or teal balloons within your community, place of business, office or front lawn. Encourage hospitals, businesses, companies, schools, churches, synagogues, restaurants, stores, corporations, government offices, employees and co-workers to wear teal. Contact newspapers, radio, and television. Encourage Members of Congress to participate & adopt this as an annual campaign. “ Our goal is that every woman is educated and made aware of the signs, symptoms and risk factors of Ovarian Cancer.” Said, Khrissy Lupinacci.
PTEN and planarian stem cells
A recent news item: Flatworms can shed new light on cancer, stem cells, News Track India, Sep 18, 2008. Excerpts:
The last sentence of the Abstract:
During a study, scientists at the University of Utah and the Forsyth Institute at Harvard found that the flatworm contains a gene highly similar to the human gene PTEN, which is often found to be mutated in cancer cases.
.....
The study has been published in the journal Disease Models and Mechanisms (DMM).The article is: Planarian PTEN homologs regulate stem cells and regeneration through TOR signaling, Néstor J. Oviedo, Bret J. Pearson, Michael Levin and Alejandro Sánchez Alvarado, Dis. Model. Mech. 2008(Sep 18), doi:10.1242/dmm.000117
The last sentence of the Abstract:
Altogether, our data reveal roles for PTEN in the regulation of planarian stem cells that are strikingly conserved to mammalian models. In addition, our results implicate this protein in the control of stem cell maintenance during the regeneration of complex structures in planarians.For information about this new journal, see: Disease Models & Mechanisms (DMM), NewJour, August 7, 2008. Excerpt:
To ensure the wide dissemination of all authors' work during the launch year, DMM has made a commitment to provide immediate, unrestricted online access to all articles from Volume 1 on the journal website.
Picture Perfect
A bowl of flowers and a photo from a simpler time replace night stand clutter.
Picture perfect.
Those two words kept running through my mind as I prepared our house and gardens for my brother's wedding and reception on Saturday. As I worked through each room, I felt like a zealous dermatologist eliminating pimples, blackheads and unsightly wrinkles. I was ridding the world (or at least my house and yard) of imperfections one flaw at a time.
The night stands in our bedroom were prime offenders. A pitcher of water, a half-filled (or was it half empty?) glass, a box of Kleenex, a dozen prescription medicines and TV remote control littered the top while newspapers, magazines and books filled the bottom shelf. It looked like a collision between a pharmacy and a book store. I cleared the debris on both stands and replaced it with simple ceramic pots overflowing with variegated leaves from our garden and fresh hydrangeas and mums.
I swapped an old dresser for an antique armoire that had been taking up residence in Cynthia's room for the last decade. With its rich bird's eye grain, cavernous hanging space and full length mirror, it was the perfect bridal accessory.
Room for storing bridal party finery inside and reflection for primping outside
Like an aging actress preparing for high definition TV, our bedroom was ready for the scrutiny of a camera.But then a funny thing happened. Families flooded in and chaos ensued. A two-year-old flower girl transformed into a princess, but refused to wear her ballet slippers. Three other small boys streamed in and out . The bride and bridal party slipped into their dresses and fussed with hair and makeup. The bed became cluttered with clothing, coat hangers and makeup, with a small space left for a sleeping five-month-old baby boy. And, once again, my night stands runneth over. It was a glorious mess.
Through it all, two photographers clicked away. The room had been stripped of its picture perfection and replaced with more interesting qualities: life, emotion and depth.
The whole experience made me realize how hard I work at attempting to put on a picture perfect facade in my own life. Sometimes I fear what lies beneath the surface, and other times I fear that there's nothing beneath. But during the worst of my recent illness, I was completely stripped of veneer. I looked sick and acted sicker. I had no energy, talking was tiring and I was content to do nothing for hours at a time. I could barely put on my clothing, let alone put up a front.
In short, I was a mess and the worst possible company. I could only take and had nothing to give. But, to my surprise and delight, friends still wanted to spend time with me and care for me. I am still so touched by this fact.
The beautiful flower arrangements on my night stands will soon fade and clutter will no doubt take its place. My energy is returning and I feel myself slipping back into attempting to put on the picture perfect front. When I become overwhelmed with the self-imposed expectations, I'll remember the chaos in our bedroom and remind myself that the most interesting shots are the real (and sometimes messy) ones. And that my friends will be my friends regardless.
Saturday, September 20, 2008
Internal Affairs
chemo kicks your ass.
jesus.
Four days later and I still feel weak, still nauseous and generally crappy. My tastebuds have started to go. It feels as though my tongue is covered in plastic wrap. I will be craving spaghetti all day, but after it's prepared I can't bear the taste or smell. I've lost a little bit of weight already, unfortunately.
I am NOT looking forward to cycle 2 (very much not antm), which will be 5 days straight of cyclophosphamide, etoposide, and ifosfamide.
To counteract the loss of white blood cells, I've got to give myself shots every day. For some reason (I of all people should not be afraid of needles) this freaks me out. Self-inflicted pain is no longer fun! praise be! Being the anal-retentive tard I am, I set everything out in front of me exactly the same way each time. like so. It is a little ritual.
...
While incapacitated and miserable have been researching some major lifestyle changes to aid in my recovery. Let me explain:
I have always put my body second. My goal for most of my adult life has been design and success at any expense. Work and school full time lead to stress and performance anxiety, which lead to depression, which lead to drinking, et cetera, a veritable smorgasboard of toxins and bad habits ensue. I am aware that none of these things caused my sacroma, but HELL. I even cancelled an ultrasound that would have revealed my tumor back in May because I didn't want to miss work at the precious and all-formidable Goorin Bros.
This isn't to say I haven't been "good". I've been vegetarian for the last six years, mostly cooking my own food. When I lived in the city I would walk everywhere. I have always been active and felt strong.
SO. CHANGES.
I have started yoga. Nothing impressive because I'm still fatigued- just 30 minutes every morning to stretch and breath. As time goes on I'd like to get into tibetan yoga practice- there is a temple here that offers classes in exchange for donations.
Fish. Yes. I'm going to start eating meat again after 6 years of strict vegetarianism. Fish only. I've always said I'd eat meat to survive, and now is the time if any. Omega 3's! I need to take so many meds as it is, I'd rather get my nutrients in natural, non-supplement forms.
In addition to the fish, I'm juicing the soul out of every vegetable I can find. For the enzymes, of course. Not because I feel omnipotent pushing little baby carrots into the bowels of hell.
jesus.
Four days later and I still feel weak, still nauseous and generally crappy. My tastebuds have started to go. It feels as though my tongue is covered in plastic wrap. I will be craving spaghetti all day, but after it's prepared I can't bear the taste or smell. I've lost a little bit of weight already, unfortunately.
I am NOT looking forward to cycle 2 (very much not antm), which will be 5 days straight of cyclophosphamide, etoposide, and ifosfamide.
To counteract the loss of white blood cells, I've got to give myself shots every day. For some reason (I of all people should not be afraid of needles) this freaks me out. Self-inflicted pain is no longer fun! praise be! Being the anal-retentive tard I am, I set everything out in front of me exactly the same way each time. like so. It is a little ritual.
...
While incapacitated and miserable have been researching some major lifestyle changes to aid in my recovery. Let me explain:
I have always put my body second. My goal for most of my adult life has been design and success at any expense. Work and school full time lead to stress and performance anxiety, which lead to depression, which lead to drinking, et cetera, a veritable smorgasboard of toxins and bad habits ensue. I am aware that none of these things caused my sacroma, but HELL. I even cancelled an ultrasound that would have revealed my tumor back in May because I didn't want to miss work at the precious and all-formidable Goorin Bros.
This isn't to say I haven't been "good". I've been vegetarian for the last six years, mostly cooking my own food. When I lived in the city I would walk everywhere. I have always been active and felt strong.
SO. CHANGES.
I have started yoga. Nothing impressive because I'm still fatigued- just 30 minutes every morning to stretch and breath. As time goes on I'd like to get into tibetan yoga practice- there is a temple here that offers classes in exchange for donations.
Fish. Yes. I'm going to start eating meat again after 6 years of strict vegetarianism. Fish only. I've always said I'd eat meat to survive, and now is the time if any. Omega 3's! I need to take so many meds as it is, I'd rather get my nutrients in natural, non-supplement forms.
In addition to the fish, I'm juicing the soul out of every vegetable I can find. For the enzymes, of course. Not because I feel omnipotent pushing little baby carrots into the bowels of hell.
OKTOBERFEST IST HIER!!!
NEW ARRIVALS:
1. HOFBRAU OKTOBERFEST-in 6 packs at $10.99 and singles at $1.99.
2. Hacker-Pschorr Oktoberfest-in 6-packs at $9.99.
3.Dogfish Head Punkin Ale-in 4-packs at $12.99. You got punked, son!
4. 21st Amendment Can 6-packs-Watermelon Wheat and IPA-$10.99 each.
Cheers!
-dave
Soccer Saturday after the Friday night fights
Friday
I almost set it off in Target while shopping for the girls new bathroom ensemble; some young punk (cuss word) were smoking a cigar in the store (hey buddy the store is smoke free), my wife got a little embarrassed b/c I was the one out of all the shoppers in the store (also buying) ensembles that told the kids to put it out or leave the store young punk......You can smoke outside away from the store; the law allows for that. The doctors put me on more meds the other day, hormone pills mixed w/ steroids I really don’t think I need the hormone pills (still counteracting the chemo from 2 years ago) as you can tell from the previous paragraph I am all right, mean, hostile and still subscribing to the philosophy that sometimes for principal you have to kick some (fill in the blank)
No bumps on my arm today at practice, I think the bumps were the result of the sun block, just long sleeve shirts were worn to soccer practice today.
Saw the pulmonary docs today that prescribed the CPAP, they weren’t happy with my lack of using the mask. They told me I would die without it, got me scared (not) news flash I am going to die (one day) anyway. I will try to do better about wearing the mask.
Saturday
Double header in soccer today, I hope Raegan doesn’t get too tired, 2 hours of running.
I almost set it off in Target while shopping for the girls new bathroom ensemble; some young punk (cuss word) were smoking a cigar in the store (hey buddy the store is smoke free), my wife got a little embarrassed b/c I was the one out of all the shoppers in the store (also buying) ensembles that told the kids to put it out or leave the store young punk......You can smoke outside away from the store; the law allows for that. The doctors put me on more meds the other day, hormone pills mixed w/ steroids I really don’t think I need the hormone pills (still counteracting the chemo from 2 years ago) as you can tell from the previous paragraph I am all right, mean, hostile and still subscribing to the philosophy that sometimes for principal you have to kick some (fill in the blank)
No bumps on my arm today at practice, I think the bumps were the result of the sun block, just long sleeve shirts were worn to soccer practice today.
Saw the pulmonary docs today that prescribed the CPAP, they weren’t happy with my lack of using the mask. They told me I would die without it, got me scared (not) news flash I am going to die (one day) anyway. I will try to do better about wearing the mask.
Saturday
Double header in soccer today, I hope Raegan doesn’t get too tired, 2 hours of running.
Friday, September 19, 2008
After Stand Up To Cancer
I think the greatest thing about Stand Up To Cancer, besides the money it raised for research, was that it helped us all to be aware of the need to support cancer research funding. I think the public response to Stand Up To Cancer (countless celebrities were involved and at least 10 million viewers participated) made the point that Americans care about finding an end to a disease that harms and kills so many of us.
The SU2C web site will remain up and will continue to accept donations, I hope forever. I hope that as the Jerry Lewis telethon has become an annual event that SU2C will continue every year until cancer is defeated.
There is a new pending legislation authored by Senators Kennedy and Hutchison to renew the war on cancer. Senator Kennedy was working on it before his own cancer diagnosis. Cancer had affected his family long ago...his son lost a leg to cancer when he was 12.
You can read more about the bill on this very good link Cancerbill.org. Information there also lets you know ways you can help promote this legislation when it is introduced and moving through Congress. We all need to do our best to help this legislation become reality. You can Sign up For News about this bill.
I have never been a political person or activist, there are times I haven't even voted, I'm ashamed to say. Prior to a few months ago I never paid attention to pending legislation. I excelled in school, but truly hated government and economics and political science, I suffered through those classes. The political process wasn't for me.
Becoming involved in the legislative process and writing my representatives is a totally new experience for me. I'm sure I would have been voted by many "least likely to get involved in the political process". Having been involved with the Scientist-Survivor Program and having communicated with cancer research scientists, though, opened my eyes. Having been in the cancer community so long and seeing so much suffering has truly impacted me. The largest funding source for cancer research is still the Federal government. We need the government to give us more. I've even recently become a Legislative Ambassador for the Cancer Action Network.
My small part in writing the letters I've written and doing the research I've done probably doesn't make a difference all on it's own...but if we all did it, we'd be a voice that could not be ignored.
We'll make a difference if we stand together. Please be involved.
The SU2C web site will remain up and will continue to accept donations, I hope forever. I hope that as the Jerry Lewis telethon has become an annual event that SU2C will continue every year until cancer is defeated.
There is a new pending legislation authored by Senators Kennedy and Hutchison to renew the war on cancer. Senator Kennedy was working on it before his own cancer diagnosis. Cancer had affected his family long ago...his son lost a leg to cancer when he was 12.
You can read more about the bill on this very good link Cancerbill.org. Information there also lets you know ways you can help promote this legislation when it is introduced and moving through Congress. We all need to do our best to help this legislation become reality. You can Sign up For News about this bill.
I have never been a political person or activist, there are times I haven't even voted, I'm ashamed to say. Prior to a few months ago I never paid attention to pending legislation. I excelled in school, but truly hated government and economics and political science, I suffered through those classes. The political process wasn't for me.
Becoming involved in the legislative process and writing my representatives is a totally new experience for me. I'm sure I would have been voted by many "least likely to get involved in the political process". Having been involved with the Scientist-Survivor Program and having communicated with cancer research scientists, though, opened my eyes. Having been in the cancer community so long and seeing so much suffering has truly impacted me. The largest funding source for cancer research is still the Federal government. We need the government to give us more. I've even recently become a Legislative Ambassador for the Cancer Action Network.
My small part in writing the letters I've written and doing the research I've done probably doesn't make a difference all on it's own...but if we all did it, we'd be a voice that could not be ignored.
We'll make a difference if we stand together. Please be involved.
National Ovarian Cancer Awareness Day, September 23rd, 2008
September is Ovarian Cancer Awareness Month.
This is only a drill
A couple of weeks ago, WCK's school had a fire drill. The teacher told me the drill made WCK a little bit nervous and that she cried (WCK cried, not the teacher. Although if I had to be in charge of 18 three-year-olds, I'd probably cry a lot. And drink.).
When I picked WCK up on Tuesday, the teacher told me that they had another drill, and that WCK cried again. This one was a "shelter in place" drill. I'd never heard of this before. Back in my day, we only had two kinds of drills: Fire drills (everyone went outside) and "disaster" drills (everyone went into the hallway). I think the disaster we were officially preparing for was a tornado, although I suppose a school hallway can protect from a wide range of disasters -- nuclear war, swarms of locusts, bear attacks -- so they didn't want to label it for just one particular disaster. I remember we always had to take our math books with us during disaster drills. The theory was that if debris started to rain down on us, we'd put the math books over our heads and be protected. This was either a really dumb plan or math books were made out of heavy-duty materials in the '80s. I'm not sure.
Anyway, WCK's teacher explained that a shelter in place drill is in case "someone gets into the school who is not supposed to be there, and we have to call 911." I'm guessing that "someone" = "gun-toting maniac". Later, I Googled "shelter in place" and found the same drill can be used in case of chemical attacks by terrorists. Nice. Either way, the kids all go into the bathroom together, close the door, turn off the lights, sit on the floor and "hide".
I can't say that I blame WCK for crying over this one. I mean, I'm glad --very glad -- that the school has a plan to protect my child, but knowing that that it's necessary for three-year-olds to have to prepare for these kinds of things makes me want to start crying myself. Maybe WCK wasn't crying out of fear: She was presenting a moving commentary on today's society. Cry away, WCK. Cry away!
When I picked WCK up on Tuesday, the teacher told me that they had another drill, and that WCK cried again. This one was a "shelter in place" drill. I'd never heard of this before. Back in my day, we only had two kinds of drills: Fire drills (everyone went outside) and "disaster" drills (everyone went into the hallway). I think the disaster we were officially preparing for was a tornado, although I suppose a school hallway can protect from a wide range of disasters -- nuclear war, swarms of locusts, bear attacks -- so they didn't want to label it for just one particular disaster. I remember we always had to take our math books with us during disaster drills. The theory was that if debris started to rain down on us, we'd put the math books over our heads and be protected. This was either a really dumb plan or math books were made out of heavy-duty materials in the '80s. I'm not sure.
Anyway, WCK's teacher explained that a shelter in place drill is in case "someone gets into the school who is not supposed to be there, and we have to call 911." I'm guessing that "someone" = "gun-toting maniac". Later, I Googled "shelter in place" and found the same drill can be used in case of chemical attacks by terrorists. Nice. Either way, the kids all go into the bathroom together, close the door, turn off the lights, sit on the floor and "hide".
I can't say that I blame WCK for crying over this one. I mean, I'm glad --very glad -- that the school has a plan to protect my child, but knowing that that it's necessary for three-year-olds to have to prepare for these kinds of things makes me want to start crying myself. Maybe WCK wasn't crying out of fear: She was presenting a moving commentary on today's society. Cry away, WCK. Cry away!
nothing new going on here
Just got my CT results from a very up-beat sounding nurse.
No change.
I have not begun to appreciate how relieved I am.
Updated: I have a new post, The Metastatic Cancer Patient's Guide to the CT Scan in 16 Easy Steps up at MyBreastCancerNetwork.Com.
No change.
I have not begun to appreciate how relieved I am.
Updated: I have a new post, The Metastatic Cancer Patient's Guide to the CT Scan in 16 Easy Steps up at MyBreastCancerNetwork.Com.
Thursday, September 18, 2008
telling it like it is
My youngest son had an appointment with the allergist yesterday. It had been two years since his last visit and it was time to check whether he had outgrown any of his allergies (as we hoped) or whether he had acquired any new ones (two years ago we learned that he had developed an allergy to nuts).
The results were pretty much the same as last time. He is allergic to peanuts, nuts, sesame and poorly cooked eggs (this one doesn't matter much, since he won't eat eggs at all, even well-cooked ones). His environmental allergies include cats and feathers. Elm trees have been added to the list (we suspected a tree allergy since he does seem to react in the spring).
The test involves a scratch test on the arm. Lots of little scratches at the same time. My spouse says that D. cried when the test was being done but recovered quickly when he was offered a little prize. After the test, D. and his dad went out to the waiting room to await results (or while D.'s arm "lit up like a Christmas tree" according to my spouse).
While they sat there, a mother was trying to comfort her daughter, who was obviously very nervous. "It doesn't hurt," the mom said. This prompted D. to get out of his chair, walk up to the girl and look her in the eye. "Oh, no," he said. "It hurts."
Yet another reason why cancer is tough
I already have my six-month Mayo checkup set up for late November. In general, this is a good thing. However, today I opened up my mailbox and found ...
(Dramatic pause)
A fresh Pee Pod.
NOOOOOOOOOOOOOOOO!!!!!!!!!!!!
(Dramatic pause)
A fresh Pee Pod.
NOOOOOOOOOOOOOOOO!!!!!!!!!!!!
Uneventful weeks, are good
It was another uneventful week, I still have not gotten the results back from my lab work on Saturday, so the UT Swtrn folk can expect a call or two on Monday (so can the lab). Will be spending time with the pulmonary sleep docs on Friday who I am sure will try a little pshycology 101 to get me to use the fighter sleep mask (psychology 101 won't work on me I took the class TWICE, ) It is hard to use the mask since I have been so congested for several week
Soccer tomorrow I am looking forward to Practice (Practice I am talking 'bout practice), I will also go without sunblock to see if I can reproduce the white bumps that I have noticed on several occasions appearing on my arms; I wonder if my sunblock is to heavy 60 SPF,
Soccer tomorrow I am looking forward to Practice (Practice I am talking 'bout practice), I will also go without sunblock to see if I can reproduce the white bumps that I have noticed on several occasions appearing on my arms; I wonder if my sunblock is to heavy 60 SPF,
Martha Immersion Monday
I ate Martha's fried chicken and baked her daughter's favorite chocolate chip cookies while watching the Martha Stewart Show. That's what I call a Martha Immersion Monday.
See how the cookies came out at Open Mouth, Insert Fork.
See how the cookies came out at Open Mouth, Insert Fork.
Wednesday, September 17, 2008
NEW SAKE ARRIVALS
A couple of notable new additions to our sake selection.
1. Hakutsuru Sho-Une Junmai Dai Ginjo-Dry, full bodied. $12.99
2. Ozeki Ginjo Premier-California sake brewed to the highest standards-$23.99
3. Kamoshibito Kuheiji-Domaine Nine-The first sake to be featured on a 3 Michelin star restaurant's wine list (Guy Savoy, Paris).-$49.99
cheers!
-dave
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