Right by my laptop lies a clipping from Sunday’s Times (7-27-08) Style section that really needs a credibility check. Its about jeans. Of the $200-plus variety.
You know, the kind you see on people with trust funds or a rich companion (interpretation: everyone but us). For women who saunter and consider the position of their hipbones as they do. People like me and you, who slouch over computers and have hipbones that are temporarily misplaced, long for one, just one really cool pair of jeans to keep the world running smoothly.
The photo from the clipping is, surprise, the very same product photo on the website of the designer. Go check that out. I would have thought the Times above that kind of crass commercialism, a concept long embedded in our DNA from that far-off and imaginary land called journalism. Sort of like living in Iowa, which happens to be where we grew up. This is probably rhetorical, but really, did the designer's stylist talk to the editor's girl? Are the $200 jeans on the wait list at Barney's the only ones fit to print? Even the supposedly everywoman's Oprah's pick (Cambio) retail for $190-something at Nordstroms.
Excuse me, for jeans? Let's open up the topic. Where, oh where, women of the world, are you finding your perfect" wow, do i feel good" jeans for under $100? Does this dog exist at all?
We used to find them at the GAP until the top of the jeans landed four inches below the belly button. We aged right out of that demographic. We bought, wore and worshipped the Levi's until we aged out of that demographic, too. The last pair I tried on had that upbiquitious, snakey stretch material that clings to sweaty skin like a leotard. That doesn't work in the hot, hot, hot air of Happy, Texas and it probably doesn't work for you, either.
Just so you know, the Sunday Style jeans are ..."higher waisted, well-washed.....the antithesis of the dark, skinny jeans that have saturated the denim market. " Heavy sigh. I wish I had a pair of them to try on right now.
Kamis, 30 Juli 2015
Rabu, 22 Juli 2015
Patient Empowerment: Two
There are some experiences you can not understand until you're there. Being diagnosed with cancer is one of them.
Even with a history of cancer in my family, suddenly becoming the one with the diagnosis was surreal. It was the first visceral understanding I'd ever experienced of my own mortality. And the younger you are at diagnosis, the greater the shock and sense of displacement. In a moment I'd navigated a passage from working writer/wife/friend/sister to "DidYouKnowThatJodyHasCancer, OhMYGOD." From then until now has been and continues to be an incredible journey.
Many of you know that I'm participating on a panel discussion Friday on "Patient Empowerment" in Chicago (Cancer Treatment Centers of America) with four awesome cancer advocates -- Joe Bacal, Lani Horn, Mel Majoros, and Matthew Zachary. We'll be bouncing around "best practices" from cancer land, so to speak, or "what we wish we knew from the get go." On Twitter and Facebook I've asked you to send me some of those tips. Here's what you've been telling me to pass on -- and no, I DID NOT make any of these up. Each of these -- as frightening as some are -- have been submitted by you within the past week:
1) I'm a person, doctor, not a medical record number. Please read me the right report. I don't want to know the results of anyone else's scan but mine.
2) Tap the power of the internet. The internet can be essential for connecting immediately with someone in exactly the same situation. Try Twitter or Facebook. You can post a question on Twitter and receive many cordial, helpful replies in a very short time.
3) Caregivers need support. So much of the focus is on the patient yet the caregiver often needs as much if not more support. Partners, especially those with young children, have the double whammy of an ill spouse, a job AND children all at once. It's essential that our caregivers receive assistance, too, and with that said, one of my personal recommendations is:
4) Organize your treatment centered life. One of my best friends stepped right up on her own and organized people, meals, rides, and communication. I am forever grateful to her. You may need to ask someone to do so and if that's difficult for you to ask for help, CALL ME. It can make so much of a difference for you:) There are also awesome organizations you can call who will send you tools to do so:
About Cancer Itself
1) Get the facts -- not the fears -- on cancer. Our government's medical information is excellent and their web sites -- easy to navigate. You can obtain good basic information from:
3) "It's your life," a friend said the other night, "and at some point you stop being a patient and get back to living. You've heard the old joke about the line you DON't want on your tombstone? 'I told you I wasn't feeling well.' Get hold of your health."
I know I've just barely scratched the surface. If there's something I've missed we don't go live until 2:30 Friday afternoon CT so please write here, email me at jschoger@gmail.com or send me a DM on Twitter to @jodyms!
Be excellent and thanks as always, friends.
Even with a history of cancer in my family, suddenly becoming the one with the diagnosis was surreal. It was the first visceral understanding I'd ever experienced of my own mortality. And the younger you are at diagnosis, the greater the shock and sense of displacement. In a moment I'd navigated a passage from working writer/wife/friend/sister to "DidYouKnowThatJodyHasCancer, OhMYGOD." From then until now has been and continues to be an incredible journey.
Many of you know that I'm participating on a panel discussion Friday on "Patient Empowerment" in Chicago (Cancer Treatment Centers of America) with four awesome cancer advocates -- Joe Bacal, Lani Horn, Mel Majoros, and Matthew Zachary. We'll be bouncing around "best practices" from cancer land, so to speak, or "what we wish we knew from the get go." On Twitter and Facebook I've asked you to send me some of those tips. Here's what you've been telling me to pass on -- and no, I DID NOT make any of these up. Each of these -- as frightening as some are -- have been submitted by you within the past week:
1) I'm a person, doctor, not a medical record number. Please read me the right report. I don't want to know the results of anyone else's scan but mine.
2) Tap the power of the internet. The internet can be essential for connecting immediately with someone in exactly the same situation. Try Twitter or Facebook. You can post a question on Twitter and receive many cordial, helpful replies in a very short time.
3) Caregivers need support. So much of the focus is on the patient yet the caregiver often needs as much if not more support. Partners, especially those with young children, have the double whammy of an ill spouse, a job AND children all at once. It's essential that our caregivers receive assistance, too, and with that said, one of my personal recommendations is:
4) Organize your treatment centered life. One of my best friends stepped right up on her own and organized people, meals, rides, and communication. I am forever grateful to her. You may need to ask someone to do so and if that's difficult for you to ask for help, CALL ME. It can make so much of a difference for you:) There are also awesome organizations you can call who will send you tools to do so:
- The Lance Armstrong Foundation -- Survivor Care
- The National Coalition for Cancer Survivorship: Cancer Survival Toolbox
1) Get the facts -- not the fears -- on cancer. Our government's medical information is excellent and their web sites -- easy to navigate. You can obtain good basic information from:
- The National Cancer Institute: http://www.cancer.gov/. You can stay on this site or follow links to the nation's NCI-designated cancer centers. All of these hospitals, in turn, provide a wealth of information, and also link to non-profit organizations advocating for specific cancers.
- U.S. News & World Report -- Hospital Rankings: Cancer: http://health.usnews.com/best-hospitals/rankings/cancer
- The American Cancer Society is another great starting point. I especially like the section on treatment decision tools: http://bit.ly/bwAPzX
3) "It's your life," a friend said the other night, "and at some point you stop being a patient and get back to living. You've heard the old joke about the line you DON't want on your tombstone? 'I told you I wasn't feeling well.' Get hold of your health."
I know I've just barely scratched the surface. If there's something I've missed we don't go live until 2:30 Friday afternoon CT so please write here, email me at jschoger@gmail.com or send me a DM on Twitter to @jodyms!
Be excellent and thanks as always, friends.
Jumat, 17 Juli 2015
Empowerment
This was in 1973 and I was 19.
So that summer I talked with patients all day long, day in and day out. After I grew up I worked a corporate hospital company in Texas and also an academically based, inner city hospital in Dayton. That's where I really learned what makes these incredible institutions tick. For one report I tagged the Director of Nurses (the DON) on the night shift. We walked down dimmed hallways with a flashlight, checking monitors, answering pages, whispering. I tagged a slightly manic, Napoleon sized ER doc who worked miracles one night extricating an object lodged in a child's trachea. I can still see the X-ray and feel that stop-time moment between life and death. Since then I've written about some of these events, lost both of my parents to cancer, was diagnosed with cancer myself, then walked the same hallways with my husband when he was treated for cancer in 2002 and 2004.
And all these years later I am still talking about health education and advocacy. Same things, different time, different vocabulary, different technology. How different it all is and how familiar it feels.
Next week I'll speak on a panel on "patient empowerment" at a rally sponsored by Cancer Centers of America in Chicago. You need to know more now to successfully navigate the health care system. How do you shake off the fear following a cancer diagnosis and take control of the issues and decisions? We'll talk about that.
What have you learned from your experience as a cancer survivor that you'd like to pass on? Please let me know, there are women out there who need to hear from you.
What are the five things you wish you'd known about cancer treatment when you were diagnosed? Talk to me:)
Have yourselves an awesome weekend,
Jody
# # #
About the event:
Treatment Environment, Health Literacy May Improve Cancer Outcomes
Sabtu, 11 Juli 2015
Out of Isolation - #BCSM
Even if no (wo) man is an island it can certainly feel that way when you have cancer.
I've often wondered if the dislocation I felt during treatment was simply part of being ill in general or a side affect of cancer in particular. Certainly younger cancer survivors often experience an acute sense of isolation and loneliness since few, if any, of their peers are in the same boat. Even at 43 (old by young adult standards), I was the first of my friends to go through cancer treatment and when I was hospitalized at one point with a life-threatening infection, it felt as though I was hovering on the edge of the world.
Then last week I read a post of Beth Gainer's "Heroic Moments" where she talked about the people who helped her though treatment. Her then-husband and parents could not cope with her diagnosis. That would be a kind of lonlieness few of us can imagine.
Her post reminded me that most of us with cancer end up feeling disjointed and jarred emotionally in some way, so for tonight's second #BCSM tweetchat we'll talk about the ways we cut through that isolation. Was it a natural process? Did someone reach out to you and help you through? Did you reach out via social media or some other channel? I think these thoughts and experiences are part of the survivor's journey and as importantly - a point where intervention can help make the process easier for each other.
So let's help each other out of the trenches, then dance on tables.
Join Alicia Staley and I tonight at 9 pm ET for the weekly #BCSM - breast cancer social media - tweetchat. Look forward to talking with you!
Senin, 06 Juli 2015
#BCSM Sparklers
The debut of #BCSM last night had its own share of fireworks, sparklers and verbal pyrotechnics that ranged from the poignant to the hilarious.
What a way to begin.
There were 55 people who joined in, from all across the country and Canada. We had an almost equal blend of survivors, doctors, nurses, and medical professionals.
Three things struck me:
I. The Scope of People Affected. The survivors who signed on last night also included the sisters, husbands, daughters, and friends of women with cancer. Their curiosity, willingness to understand and learn moved me enormously. As a community, we always have to remember that for each of one of us diagnosed there's a circle of loving and caring people.
When asked via @stales T1: What brought all of you here tonight for #BCSM? What do you hope to learn, gain, or share? the tweeting torrent began:
@KathyKastner: I come from a family of bc surviors..myself: health blogger and curator, producer of pt ed tv networks. Likely lurking and learning #bcsm
@NateOsit: Nate here, friendly Health IT geek, poking my head in to see patient activism in action! #bcsm
@MedPedsDoctor: BC does not stop on a holiday. Neither should we. Time to learn from others #bcsm
@NurseFriendly: @PracticalWisdom Breast cancer affects the entire family, not just the woman who has it. Guys can use some pointers on how to help :) #BCSM
@CrGonzalez: Hope to gain BC perspective and insights; also want to learn how to stay cancer-free.
@amyrnbsn: Serendipity as well, but now I'm here to understand how to best support a pal. #bcsm
Within this group of participants, there was sincere desire to understand current thoughts about prevention, as well, which is something for all of us to think about! That's a topic for a chat on its own.
2. Incredible Dynamics and Depth of the Breast Cancer Community Itself.
The reality of breast cancer is how much the disease can vary by individual case, from preinvasive tumors to women who have had multiple surgeries, chemotherapy, radiation and hormone therapy. Some have all or part of those elements. Some are in remission. Some are cured and will only know this with 100% certainty when they die of something else. Some have metastatic disease, which is not curable and involves ongoing treatment that the survivor does not "finish." In other words, all breast cancers are not the same. They are hardly equal. Yet the desire to connect, support each other, share information and yes, laugh, knocks me out time and time again. The survivors on our chat ranged from women who are still in treatment, have recently finished to women who were diagnosed at a young age with metastatic illness.
These women these women wanted to educate others as much or more than they hoped to gain.
@ccchronicles: Repeat after me...I must use the hashtag #BCSM
@adamslisa: @BCSMchat I'm here to answer any questions that newly-diagnosed or in-treatment women might have, esp abt BC diag/treatment as a mom
@bugoliath: @stales My sense is the many people have the wrong idea of breast cancer. I hope we can change that.#bcsm
@bugoliath The belief that it's curable, for one thing and not the nightmare it truly is for most women
@ccchroncicles “@bugoliath: The belief for most womem...Roger that BUG #BCSM
@bcsisterhood There needs to be real honesty between patient/family & doctor. Some families don't want the truth. #bcsm
@drsnit No one teaches people HOW to be patients. Getting a diagnoses is just the first part of the process of illness journey #bcsm
These women wanted to educate as much or more than they hoped to gain.
3. Honest: Poignant, Up Close and Personal.
What a way to begin.
There were 55 people who joined in, from all across the country and Canada. We had an almost equal blend of survivors, doctors, nurses, and medical professionals.
Three things struck me:
I. The Scope of People Affected. The survivors who signed on last night also included the sisters, husbands, daughters, and friends of women with cancer. Their curiosity, willingness to understand and learn moved me enormously. As a community, we always have to remember that for each of one of us diagnosed there's a circle of loving and caring people.
When asked via @stales T1: What brought all of you here tonight for #BCSM? What do you hope to learn, gain, or share? the tweeting torrent began:
@KathyKastner: I come from a family of bc surviors..myself: health blogger and curator, producer of pt ed tv networks. Likely lurking and learning #bcsm
@NateOsit: Nate here, friendly Health IT geek, poking my head in to see patient activism in action! #bcsm
@MedPedsDoctor: BC does not stop on a holiday. Neither should we. Time to learn from others #bcsm
@NurseFriendly: @PracticalWisdom Breast cancer affects the entire family, not just the woman who has it. Guys can use some pointers on how to help :) #BCSM
@CrGonzalez: Hope to gain BC perspective and insights; also want to learn how to stay cancer-free.
@amyrnbsn: Serendipity as well, but now I'm here to understand how to best support a pal. #bcsm
Within this group of participants, there was sincere desire to understand current thoughts about prevention, as well, which is something for all of us to think about! That's a topic for a chat on its own.
2. Incredible Dynamics and Depth of the Breast Cancer Community Itself.
The reality of breast cancer is how much the disease can vary by individual case, from preinvasive tumors to women who have had multiple surgeries, chemotherapy, radiation and hormone therapy. Some have all or part of those elements. Some are in remission. Some are cured and will only know this with 100% certainty when they die of something else. Some have metastatic disease, which is not curable and involves ongoing treatment that the survivor does not "finish." In other words, all breast cancers are not the same. They are hardly equal. Yet the desire to connect, support each other, share information and yes, laugh, knocks me out time and time again. The survivors on our chat ranged from women who are still in treatment, have recently finished to women who were diagnosed at a young age with metastatic illness.
These women these women wanted to educate others as much or more than they hoped to gain.
@ccchronicles: Repeat after me...I must use the hashtag #BCSM
@adamslisa: @BCSMchat I'm here to answer any questions that newly-diagnosed or in-treatment women might have, esp abt BC diag/treatment as a mom
@bugoliath: @stales My sense is the many people have the wrong idea of breast cancer. I hope we can change that.#bcsm
@bugoliath The belief that it's curable, for one thing and not the nightmare it truly is for most women
@ccchroncicles “@bugoliath: The belief for most womem...Roger that BUG #BCSM
@bcsisterhood There needs to be real honesty between patient/family & doctor. Some families don't want the truth. #bcsm
@drsnit No one teaches people HOW to be patients. Getting a diagnoses is just the first part of the process of illness journey #bcsm
These women wanted to educate as much or more than they hoped to gain.
3. Honest: Poignant, Up Close and Personal.
These women call it as they see it:. On this question: T2: When women finish treatment they hear this term "new normal" and think, WHAT? What is your norm now? we heard the following:
@BethGainer: @BCSisterhood @bugoliath I'm here because breast cancer has forever altered my life. Want to be with like-minded people. #bcsm
@ccchronicles: @jodyms with BC mets I have all but forgotten normal. Sure do seem to spend a lot of time dealing with cancer crap. #BCSM
@RockNRealty: New Normal is kind of ever changing, an evolving process, i don't try to seek it anymore, i explore the journey #bcsm
@adamslisa @jodyms When I was diagnosed I didn't know anyone my age who had had it (age 37). I wanted advice abt chemo while raising young kids. #bcsm
@ccchronicles: With BC mets, treatment is never over.....I'm amazed how many don't know this #BCSM
@BethGainer: The image of a mental toll road came to mind, never ending. #bcsm
@adamslisa: acknowledging that it's a NEW normal and not just "back to normal" is a step. sometimes friends, relatives don't get that part #bcs
And toward the end I was struck by:
@MedPedsDoc No patient goes into office saying "today I will be grumpy/crazy". Docs need to adjust to the patient's POV. It's all about the pt! #bcsm
@adamslisa: patients need to learn how to tune out the noise of fear, keep forging ahead w/ support of others re: fear of recurrence #bcsm
@Rocknrealty: Normal now includes: hugging my kids, not giving a shit about some little stuff, having short hair, crying easier #bcsm
@BethGainer: @BCSisterhood @bugoliath I'm here because breast cancer has forever altered my life. Want to be with like-minded people. #bcsm
@ccchronicles: @jodyms with BC mets I have all but forgotten normal. Sure do seem to spend a lot of time dealing with cancer crap. #BCSM
@RockNRealty: New Normal is kind of ever changing, an evolving process, i don't try to seek it anymore, i explore the journey #bcsm
@adamslisa @jodyms When I was diagnosed I didn't know anyone my age who had had it (age 37). I wanted advice abt chemo while raising young kids. #bcsm
@ccchronicles: With BC mets, treatment is never over.....I'm amazed how many don't know this #BCSM
@BethGainer: The image of a mental toll road came to mind, never ending. #bcsm
@adamslisa: acknowledging that it's a NEW normal and not just "back to normal" is a step. sometimes friends, relatives don't get that part #bcs
And toward the end I was struck by:
@MedPedsDoc No patient goes into office saying "today I will be grumpy/crazy". Docs need to adjust to the patient's POV. It's all about the pt! #bcsm
@adamslisa: patients need to learn how to tune out the noise of fear, keep forging ahead w/ support of others re: fear of recurrence #bcsm
@Rocknrealty: Normal now includes: hugging my kids, not giving a shit about some little stuff, having short hair, crying easier #bcsm
@BethGainer: Normal for me is double edged. On one side, I appreciate life and have zest for it. On the other, I am haunted. #bcsm
This is just a brief sampling and that was just the first talk. Thanks, from Alicia Staley and me, for joining us, for sharing your best thoughts with us, and your time. We'd love to hear from you:)
Resources:
#BCSM Transcript
On Twitter follow @BCSMChat: The intersection of breast cancer and all things social media.
Watch for: http://bcsm.info
Resources:
#BCSM Transcript
On Twitter follow @BCSMChat: The intersection of breast cancer and all things social media.
Watch for: http://bcsm.info
Minggu, 05 Juli 2015
Starting #BCSM Tonight! Topic: What's Normal Now?
Let me put it this way: we've been talking about this for too long. Just do it, we said.
An online chat usually starts with a short period of introduction then either three questions (sometimes less) in 15-minute segments. Sometimes groups have chatted for an hour on ONE question.
Tonight's questions are:
1) Tell us why you're here for #BCSM tonight. What do you hope to gain/learn/change?
2) Some call life after treatment the new normal. Let's go beyond that. What's normal now?
3) From a question that Lani Horn (@chemo_babe) tweeted today: what do you do to keep your independence* from cancer? And we DO want to hear from women with metastatic disease on this question, too. All of us have to have a "cancer free zone" in our minds. How do you separate cancer treatment from your identity?
And one last thing: please let us know what you think of this day and time. We want to include as many as possible. I look forward to "seeing" all of you tonight!
#BCSM Tweetchat - 9 pm ET.
Rabu, 01 Juli 2015
Let's Talk: #BCSM - Breast Cancer Social Media
I can honestly say that social media changed my life.
If that seems overarching let me just tell you a quick story.
When the economy tanked in '09, so did my supply of free-lance projects. As I was looking around for additional work, I kept reading about these great unknowns. One was Twitter. The other was something called "social media."
Immediately I felt intimidated, as though it was something for cool people to do with other cool people. I've never been a cool person. And I was already in my 50's (potentially very uncool even though I'm fond of it). I knew that if I didn't go catch the bus and go to school on both I was going to have a long walk home.
Here we are today, Friday, July 1, and the introduction of #BCSM, Breast Cancer Social Media, a Twitter chat starting Monday, July 4 at 9 p.m., eastern/8 p.m., central. Initially Alicia Staley (@stales) and I will moderate, but a conversation doesn't not "belong" to either one of us.
It's ours.
And our example comes from watching and participating in three different Twitter chats, the original #HCSM moderated by the incomparable @danamlewis, #hcsmca moderated by the also incomparable @colleen_young, and #HPM, yet another fantastic discussion on hospice/palliative medicine started by @ctsinclair.
So we'll blend their example with the breast cancer community's needs.
It's our premise that the breast cancer community needs to redefine pink. That's a premise. The purpose of the chat is to find out what YOU think, from prevention, to treatment, and defining what life is for you now, today, as a woman with breast cancer. There's so much to talk about in fact that we'll never be at a loss for things to say. Far from it.
The challenge will be in saying all that's essential in each weekly, 60-minute chat. We hope that by starting up the conversation we can truly change the tide.
So please join us Monday nights, beginning at 9 pm ET/8 pm CT for #BCSM on Twitter. All you have to do is type in #bcsm in your search feature and anything related to this hashtag will appear.
The only "rules" in regard to a tweetchat are to refrain from shameless self promotion and focus, instead on exchanging the best of what we know to help each other. That's what we do every day anyway. Now we'll do so in one place, at one time.
I can't wait!
If that seems overarching let me just tell you a quick story.
When the economy tanked in '09, so did my supply of free-lance projects. As I was looking around for additional work, I kept reading about these great unknowns. One was Twitter. The other was something called "social media."
Immediately I felt intimidated, as though it was something for cool people to do with other cool people. I've never been a cool person. And I was already in my 50's (potentially very uncool even though I'm fond of it). I knew that if I didn't go catch the bus and go to school on both I was going to have a long walk home.
Here we are today, Friday, July 1, and the introduction of #BCSM, Breast Cancer Social Media, a Twitter chat starting Monday, July 4 at 9 p.m., eastern/8 p.m., central. Initially Alicia Staley (@stales) and I will moderate, but a conversation doesn't not "belong" to either one of us.
It's ours.
And our example comes from watching and participating in three different Twitter chats, the original #HCSM moderated by the incomparable @danamlewis, #hcsmca moderated by the also incomparable @colleen_young, and #HPM, yet another fantastic discussion on hospice/palliative medicine started by @ctsinclair.
So we'll blend their example with the breast cancer community's needs.
It's our premise that the breast cancer community needs to redefine pink. That's a premise. The purpose of the chat is to find out what YOU think, from prevention, to treatment, and defining what life is for you now, today, as a woman with breast cancer. There's so much to talk about in fact that we'll never be at a loss for things to say. Far from it.
The challenge will be in saying all that's essential in each weekly, 60-minute chat. We hope that by starting up the conversation we can truly change the tide.
So please join us Monday nights, beginning at 9 pm ET/8 pm CT for #BCSM on Twitter. All you have to do is type in #bcsm in your search feature and anything related to this hashtag will appear.
The only "rules" in regard to a tweetchat are to refrain from shameless self promotion and focus, instead on exchanging the best of what we know to help each other. That's what we do every day anyway. Now we'll do so in one place, at one time.
I can't wait!
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