What the hell is that nurse in Maine thinking? Okay, she went ot Africa and treated patients with Ebola. She came home and was treated horribly and was stuck in an isolation tent in a hospital parking lot. Finally she was allowed to go home. Officials want her to stay in home confinement. Instead she went for a bike ride.
I mean really. She tested negative for Ebola but it can take 21 days to incubate so she still may be infected. She is not cooperating.
She isn't some kind of God who can tell if she has Ebola or not. She is a regular human being with nursing training. Ask the doctor in New York who rode the subway thinking he wouldn't spread Ebola.
Can we please start to be rational about this?
If you are at risk, just returned from treating Ebola patients in West Africa, do you mind cooperating and staying isolated for 21 days to be sure? There aren't a lot of good cures for this disease.
If you are running a fever and you did just return from West Africa, call your doctor for instructions and don't go wandering around the city until you find a crowded emergency room to treat you.
Ebola is a real problem and is on the verge of becoming a disaster. With a little bit of cooperation by all involved, it can more easily be controlled and contained. Grow up, chill out and cooperate, please!
Saturday, October 31, 2015
Huephoria
My wonderful friends at Huephoria have done it again! They are offering 25% percent of the glass sales to our team CURE OR BUST when you purchase the glass "Hue for a Cure". These beautiful glasses are not only functional but you are supporting local women. Plus, they are donating to stupid dumb breast cancer, LOVE it!! So get your glass today.
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| http://www.huephoria.com/cure-wine-glass/ is the link, check out their other styles too! |
Women Helping Women: Breast Health Collaborative of Texas
Take a handful of determined Texas women who refused to accept the terms "no access" and "uninsured," give them a little more than five years and you have the Breast Health Collaborative of Texas, a public-private partnership that works to assure that any woman with breast cancer in Texas has access to both detection and, when necessary, treatment.
That the group has been recognized both nationally and internationally comes as no surprise to me, especially after attending the organization's sixth (my second) Breast Health Summit this past week in Houston.
All the big players from the Houston Medical Center are members but a key factor of the Collaborative's effectiveness is that it may be the only place where various advocacy groups -- the people actually on the front lines with the underserved -- are members as well, from grass roots advocates for boat people, Asian, Afro-American and Latina women to the Young Survival Coalition, M.D. Anderson, Memorial Herman, Komen-Houston as well as well as professors from the University of Texas Health Science Center and School of Public Health. All good.
Content? The program included a number of animated and powerful panels and talks on survivorship as well as decoding health care reform and the role patient navigators will play. During a break-out session Venus Gines (who could ever forget her name?) explained some of the Latina woman's barriers to screening and how Dia De La Mujer Latina works not against -- but through-- those fears with community-based promatoras and "health fiestas." These programs give me hope and enthusiasm for extending access one step further: from the fiestas to phone applications from web-based programs.
This is point where we as "epatients" and digital health advocates have work to do. Understanding of social media and its potential in addressing health care was fairly low in this group. More than one speaker placed blogs (like this one or Brenda Coffee's) on the same playing field as Farmville, not as another avenue for improving access or literacy. There's much education to do on all fronts to keep the playing fields equal. If groups advocating for the underserved are missing connections via social media then we haven't yet fully completed the circle.
But thanks to the Breast Health Collaborative of Texas, we can at least contemplate what going full circle might truly mean for underserved women and their families.
Consider this example: A working mother of three gets a call one morning from her sister, who's standing in a line for a mammogram at a health fiesta in Corpus Christi. She picks up her mother, brother and sister-in-law and off they go. There's music, food, and a place for the children to play. All four women -- who have never been screened -- now have baseline mammograms. But the other brother-in-law, the one she brought back later in the afternoon? He was diagnosed, and successfully treated, for an early stage breast cancer.
If we add a social media component to this model an app is in place as a reminder with the location and date of next year's fair. This data, along with any test results, are stored as EMR in a secure portal that the patient can access. If she wants, she can upload additional information from the breast health portal to her phone.*** All the information is one place for any further referral if necessary, and an entire network of people now have an entry point to the health care system.
That works for me. Question: do you know where to refer a friend without insurance for breast and cervical cancer screening? This is what the Breast Health Collaborative does for women in Texas.
**These examples are modified from actual cases presented during a break-out session. One of the women who attended a fiesta screening program returned with her husband, who'd been too embarrassed to have a lump he'd found in his own breast examined. In the Latina community, involving the entire family is critical.
***HIPPA compliant. Today @chiah posted an important discussion on privacy and electronic health records http://bit.ly/b2YvbB.
Additional Information:
Breast Cancer Info: Medline
The Rose : Breast health services -- Harris County, Texas
Lone Star Clinic: Breast health services -- Montgomery County, Texas
St. Lukes Episcopal Health Charities Breast Cancer Portal (info on breast health services across Texas)
Breast Cancer Trials
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| Frances Arzu, founder of Pink Phuree BCS Dragon Boat Team and "Harvey," a fund-raising ribbon & brainchild of Susan Rathke. |
All the big players from the Houston Medical Center are members but a key factor of the Collaborative's effectiveness is that it may be the only place where various advocacy groups -- the people actually on the front lines with the underserved -- are members as well, from grass roots advocates for boat people, Asian, Afro-American and Latina women to the Young Survival Coalition, M.D. Anderson, Memorial Herman, Komen-Houston as well as well as professors from the University of Texas Health Science Center and School of Public Health. All good.
Content? The program included a number of animated and powerful panels and talks on survivorship as well as decoding health care reform and the role patient navigators will play. During a break-out session Venus Gines (who could ever forget her name?) explained some of the Latina woman's barriers to screening and how Dia De La Mujer Latina works not against -- but through-- those fears with community-based promatoras and "health fiestas." These programs give me hope and enthusiasm for extending access one step further: from the fiestas to phone applications from web-based programs.
This is point where we as "epatients" and digital health advocates have work to do. Understanding of social media and its potential in addressing health care was fairly low in this group. More than one speaker placed blogs (like this one or Brenda Coffee's) on the same playing field as Farmville, not as another avenue for improving access or literacy. There's much education to do on all fronts to keep the playing fields equal. If groups advocating for the underserved are missing connections via social media then we haven't yet fully completed the circle.
But thanks to the Breast Health Collaborative of Texas, we can at least contemplate what going full circle might truly mean for underserved women and their families.
Consider this example: A working mother of three gets a call one morning from her sister, who's standing in a line for a mammogram at a health fiesta in Corpus Christi. She picks up her mother, brother and sister-in-law and off they go. There's music, food, and a place for the children to play. All four women -- who have never been screened -- now have baseline mammograms. But the other brother-in-law, the one she brought back later in the afternoon? He was diagnosed, and successfully treated, for an early stage breast cancer.
If we add a social media component to this model an app is in place as a reminder with the location and date of next year's fair. This data, along with any test results, are stored as EMR in a secure portal that the patient can access. If she wants, she can upload additional information from the breast health portal to her phone.*** All the information is one place for any further referral if necessary, and an entire network of people now have an entry point to the health care system.
That works for me. Question: do you know where to refer a friend without insurance for breast and cervical cancer screening? This is what the Breast Health Collaborative does for women in Texas.
# # #
**These examples are modified from actual cases presented during a break-out session. One of the women who attended a fiesta screening program returned with her husband, who'd been too embarrassed to have a lump he'd found in his own breast examined. In the Latina community, involving the entire family is critical.
***HIPPA compliant. Today @chiah posted an important discussion on privacy and electronic health records http://bit.ly/b2YvbB.
Additional Information:
Breast Cancer Info: Medline
The Rose : Breast health services -- Harris County, Texas
Lone Star Clinic: Breast health services -- Montgomery County, Texas
St. Lukes Episcopal Health Charities Breast Cancer Portal (info on breast health services across Texas)
Breast Cancer Trials
Friday, October 30, 2015
some good news for a change
Something good was announced last week and I nearly missed it.
A news release from the Canadian Breast Cancer Network landed in my inbox last Wednesday. It contained the fantastic news that Kadcyla (formerly known as TDM-1) has been approved "on a time limited basis" for "HER-2 positive, metastatic breast cancer patients who have initiated or completed at least two lines of HER-2 targeted therapy and who have not received Kadcyla in previous lines of therapy."
This is very positive news. As I wrote in back in June, the drug was initially only approved for women in their "second line" of treatment which would exclude me. This despite the fact the many women in later phases of treatment have responded enormously well to the drug (each stage of chemotherapy/targeted therapy treatment is a "line." If one line fails or stops working, a patient is moved on to the next. I have been in my second line of treatment since being diagnosed with metastasis in November 2007.)
In other words, this announcement means that I, a woman with Her2+ metastatic breast cancer, will potentially be eligible for Kadcyla when if Herceptin fails.
This has been a rough week in Canada. The events of last Wednesday completely eclipsed this news, even for those of us who care deeply. I live in Ottawa. My kids' schools and my husbands office were locked down all day. My brother-in-law works at the House of Commons and was very close to where bullets were fired. I spent the day glued to my computer screen, watching the news and refreshing Twitter. Despite a host of rumours, it was a great relief to learn at the end of the day that there had only been one gunman but for much of the day, we just didn't know. It was harrowing. And such a tragedy.
I decided to wait for the dust to settle to post this little bit of news but then another big, sad story erupted on the weekend and I once again found myself glued to social media. Last night, there were some I follow posting pictures of kittens and puppies on Twitter, just to have something more positive to in their news streams.
So while the dust hasn't settled, I wanted to share my own little bit of something positive. I'm just left wondering what "for a limited time" means. Will the province then withdraw coverage? Or is this like a trial to see if it makes sense to continue?
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| My contribution to adding #somethingnice to my Twitter stream. A dog in Hallowe'en costume! |
So while the dust hasn't settled, I wanted to share my own little bit of something positive. I'm just left wondering what "for a limited time" means. Will the province then withdraw coverage? Or is this like a trial to see if it makes sense to continue?
The Canadian Breast Cancer Network calls this "a step in the right direction." Let's hope the province takes more and more permanent steps soon. Let's keep the good news coming.
That recurrence thing
Its the other elephant in the room that only the cancer person can understand. What do I do if it comes back????? As Barbara Jacoby points out over at Let Life Happen, we need a bit more focus on breast cancer, and other cancer, recurrences.
Ask any cancer patient that made it through treatment, the next concern is 'what if it comes back?' Well as my little voice of experience speaks up, at my second cancer diagnosis I was slightly more prepared than my first. I had a 'taking care of me plan' in place by day 2, even though I was so stressed about surgeries, chemo and all that fun.
Since I had already lived the cancer roller coaster for 26 years, I had some experience to fall back on. It didn't prevent me from completely freaking out but it did allow me to have a little voice inside me saying 'you did this one and got through it, you can do it again'. I also had the me plan in place.I was in a support group before my first surgery. I signed up for another support group - this one was introduction to breast cancer. At the end of treatment, when many cancer patients fall apart, I had a therapist. I blogged, I talked, and I coped with it all, with varying levels of anxiety.
My plan for cancer three is already in place. I don't care what kind of cancer it may be, but I will put me to the forefront once again. What will it take to keep me sane through the process? Probably more or continued therapy. Maybe a second opinion at some big fancy cancer hospital if its some kind of recurrence.
But what I would really like to see is more research into why some cancers recur and some don't and as to why some people are more likely to have their cancer recur than others. Give me some info people! I need to know. Thank you.
Ask any cancer patient that made it through treatment, the next concern is 'what if it comes back?' Well as my little voice of experience speaks up, at my second cancer diagnosis I was slightly more prepared than my first. I had a 'taking care of me plan' in place by day 2, even though I was so stressed about surgeries, chemo and all that fun.
Since I had already lived the cancer roller coaster for 26 years, I had some experience to fall back on. It didn't prevent me from completely freaking out but it did allow me to have a little voice inside me saying 'you did this one and got through it, you can do it again'. I also had the me plan in place.I was in a support group before my first surgery. I signed up for another support group - this one was introduction to breast cancer. At the end of treatment, when many cancer patients fall apart, I had a therapist. I blogged, I talked, and I coped with it all, with varying levels of anxiety.
My plan for cancer three is already in place. I don't care what kind of cancer it may be, but I will put me to the forefront once again. What will it take to keep me sane through the process? Probably more or continued therapy. Maybe a second opinion at some big fancy cancer hospital if its some kind of recurrence.
But what I would really like to see is more research into why some cancers recur and some don't and as to why some people are more likely to have their cancer recur than others. Give me some info people! I need to know. Thank you.
Jules happiest of days
Right before this amazing OPPS baby (you know what I mean the opps I didn’t have my husband fix the plumbing!!) was born my grandmother died, I mean like days before. I held him in so we could bury a grandmother that was more like a mother to us. After the services were over my OB insisted I come in, “How the hell this baby is still in you is beyond me!! GO STRAIGHT TO THE HOSPITAL, do not stop for French fries (I did this with Sam and he knew me all to well).” SO we went there a few hours later this adorable Jules was born. He was truly a gift from Nana something to turn our sadness to joy and make our family see that life continues. Julian was so cute and extremely cuddly, still is we often wonder if Dr. Rick forgot to cut the cord! Thank the gods he is because the kid has a temper like no other and cried like no child before him and never slept, I mean EVER and ate like a pig. I have no idea who this kid takes after, hahaha. But he fit in perfectly. I am not sure if the other boys just wanted to shut him up or if they actually were helping calm the crier either way he still gets his way to this day.
What this little monkey butt did for sure was give Anthony his best friend. Julian leans on Anthony and Anthony holds him up. They talk, share secrets and bitch about how the older boys are jerks. Just what a brother needs a buddy.
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He is a ninja and will do a cartwheel to get to his Ninjago legos faster than you
can say “DUDE!!!!” He is my most violent child so do not touch his TMNT or anything else he has claimed, he will take you down! Do not dare him because he will accept the challenge and take your money no problems. Again I have no idea where he comes from.
Julian will forever be my baby and not just because he is the last kid but because he is completely attached to me.Julian can walk in heels higher than me and with such swag. He understands how important it is to sparkle and that glitter is a color. He will snuggle with me all day if I didn’t have to pee or he had to go to school. And one thing is for sure he not only knows his momma is a princess, he shines my tiara!!
Happy Birthday to my Glittery ninja!!
Thomas Moores Urges "Survivors" to Use Their Experience to Human Care for Others
"The key to seeing the world’s soul, and in the process wakening one’s own, is to get over the confusion by which we think that fact is real and imagination an illusion."
Thomas Moore,
from Interview with Thomas Moore
Psychologist and author Thomas Moore, PhD., opened the fifth annual Texas Breast Health Summit in Houston today with a gentle address on the importance of healing the spirit in the wake of cancer.
"This is a soul gathering," he told the group, a mixture of survivors, volunteers and caregivers. "Those of you who have had cancer know something the rest of do not. You know what has to be done because of your experience. Your illness has taken you to a level of consciousness that others do not have. Use that change as a basis for transformation."
When people are ill, Moore explained, medicine is just one slice of the journey back to health. "We know how important the spirit is for health. We need people to stand up and speak for the things the soul needs in healing, especially in cancer."
In his writings and experience as a psychotherapist, Moore blends his studies of the world's religions, the arts and philosophy. His most well known work, "Care of the Soul" discusses ways people can deepen and enrich their lives through spiritual practise.
He said that there is something about illness that gives a person's soul, or humanity, a chance to appear. "When we are sick," he said, "something of us is revealed. We can then view our illness as an opportunity, or a rite of passage."
Moore encouraged the organizations involved to pursue alternative and holistic approaches to healing. "Let's improve the alternative/integrative approaches in a way that inspires confidence. Every year I see more progress."
His most recent book is "Writings in the Sand" and a new collection of essays will be published in next spring. For additional information on Thomas Moore go to: www.careofthesoul.net
Thursday, October 29, 2015
sometimes you confront it
photo: Andrea Ross
A few years ago I wrote a list that I turned into a blog post called "whiskers on kittens." This is the opposite of that post, because sometimes you need to deal with fear head on:
Dying.
Getting old. (I'm aware of the irony of this.)
Heights.
Being a terrible writer and not realizing it. (I had a dream last night that a former boss morphed into my father and he/they said, "You don't write. You just throw words on paper.")
Dementia.
Being irrelevant.
Going blind.
Fears too big to name. (They involve loved ones and I'm just not going there.)
Being at a cocktail party with nothing to say.
Being forgotten.
photo: Mark Blevis
Have you ever wondered what RA feels like?
Well basically you feel like crap. I did find this article that gives it a good overview.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Health care: IRL
Right now though, Claire has more on her mind than the next beautiful thing she'll create. Her family health history includes an extensive amount of breast cancer (her mother was diagnosed at 28) and she is a colon cancer survivor. Now, at 37, she's found a palpable breast lump.
She lives in Harris County, Texas, home of the massive Texas Medical Center, one of the richest, most medically intensive areas in the world. Some 40 institutions make up this city within a city.
Yet according to Shern Min-Chow, co-anchor of CBS-affiliate KHOU-TV in Houston, some 30 percent of Harris County's own residents are uninsured, far from easy access to the Medical Center campuses. That's about 1.2 million people, based on current census data. The national average is 16 percent, Min-Chow told the audience at last week's Seventh Annual Breast Health Summit, presented by the Breast Health Collaborative of Texas.
Women like Claire, with medical issues that are not emergent but ARE pressing, spend days, weeks, even months trying to have one health issue thoroughly addressed. So far it's taken two months to have an appointment at The Rose, Houston's leading facility for breast health services for under-and uninsured women.
First, Claire told me, she needed to have a referral to The Rose from a private physician to have a mammogram. She doesn't have a primary care practitioner, or PCP. So The Rose provided a referral so Claire could be referred back. Then another few weeks elapsed until she could see the doctor for the referral. This physician, in turn, was alarmed to the extent that she recommended and scheduled a stereotactic biopsy for Claire at The Rose. In turn Claire made arrangements to a friend travel to Houston so she could accompany her for the procedure.
That's where our last conversation had ended. Yesterday morning I thought about Claire while I was looking through my notes from the conference, so I dropped her an email. Ironically enough, the panel that Shern Min-Chow moderated was called, "Breast Cancer & Access to Care: The Texas State of Affairs." No one really has a clue. The private insurer pointed to the legislature; the public health official discussed the burgeoning workload; the think tank policy person ...just talked. If you asked anyone in the audience what was said the answer very well might have been, "it's a mess." Access to health care for the uninsured in Texas is a rudderless conversation.
What they needed on the panel was someone like Claire.
She arrived at the The Rose to find the test wasn't free, but cost $65.00. She was told that without the $65.00 she couldn't have the test. And instead of a sterotactic biopsy, where a small bit of tissue could be extracted for pathology analysis, the physician on duty that day said it wasn't on the schedule. After a mammogram, and an ultrasound, he said he couldn't see anything but that her breast were "very dense," a diagnostic problem in many younger women. He did add, as he was walking out the door, that she should probably get some "genetic testing."
And that's where it had all stopped when I talked with her yesterday. Nothing else has happened. She applied for Medicaid to find that she made $100 too much per month to qualify. She followed the instructions to apply for a Harris County "Gold Card," following the procedure online, only to find out half-way through that instructions have to be filled out and mailed in or delivered.
In the meantime, she says, the lump is still there.
And yes, I know it's October. We didn't have time to talk pink. We didn't have time.
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so i voted
Yesterday, municipal elections were held across Ontario. We elected our mayors, city councillors and school trustees. And I almost didn't vote.
I had a few friends ask me, in the days before the election, "Who are the progressive candidates? How are you voting?" I was at a loss to answer.
The truth is that our mayor, while not running unopposed, might as well have been. And while I acknowledge that he's very hardworking, I'm not a big fan.
My city councillor seems like a decent enough guy but I have not found him to be very responsive, the couple of times I've had to contact his office. I've also heard interviews with him, where he seems to arguing both sides of any given scenario. I'm not sure that makes him very effective at city hall. At any rate, he too seemed to running without any real opposition.
The candidate for school trustee was literally running without opposition, as he was acclaimed.
In my corner of Ottawa, the election was not very exciting and participation didn't seem compelling.
Then my kids overheard my spouse and I talking about the election and asked why I was considering not going to the polls on voting day. I had a hard time coming up with an answer that didn't sound apathetic and lazy to my own ears.
In 1988, I was part of an exchange program, that took me first to Alberta and then India. While we were overseas, a federal election was going to take place. At that time, people out of the country for an exchange program could not vote in advance polls or cast a special ballot (this loophole has long been changed). I was bitterly disappointed, as this would have been the first election since I had come of age.
The other thing I remember is that in my group of 7 Canadians (and seven Indians who looked on with interest), I was the only one who cared that we couldn't vote. As someone who bitterly opposed the sitting government, I wanted to have my say.
I have come to understand the perspective of some of my friends. We are not going to affect great change solely through the ballot box. I guess I've just decided that the ballot box is still important.
My kids are interested and engaged with the world around them. I don't want to send the message that their mother is apathetic or so jaded that she couldn't be bothered to walk three blocks to the polling station.
So I picked up my youngest from school yesterday and took him with me to vote. He watched me fill in my ballot and submit it for tabulation (electronic! Can anyone explain to me why we don't have this at the federal level?). In the end, I filled out my choice for councillor on the single ballot but didn't vote for any mayoral candidate. On the way home, we discussed how I had filled in my ballot and my reasons for making the choices that I did.
All over the world there are those who are denied the right to vote. As a woman, I have only had that right for a short part of my country's history. Showing up at the polls may not change much but I'm glad I have the chance to do so. And I want my kids to understand the range of options they can use to make their voices heard, even in a tiny way.
Wednesday, October 28, 2015
how cool is this?
Yesterday morning, I got a call from Oresta. She told me that she had read my article in the Centretown Buzz and wanted to reach out to me.
Even though I love her store and spa (I asked for gift certificates for Christmas last year), I was not on her mailing list and had not received the letter that I posted above.
It's hard to read, so here is the text, in full:
OCTOBER is BREAST CANCER AWARENESS MONTH
Pinkwasher: (pink’-wah-sher) noun. A company that pur-
ports to care about breast cancer by promoting a pink
ribboned product, but manufactures products that are
linked to the disease.
Dear clients,
ORESTA organic skin care confectionery is committed to providing organic spa
treatments and to supporting companies that manufacture truly pure and organic
products. We believe in beauty without compromising your health.
We have been touched by cancer in our families and with our clientele - as
cancer survivors and undergoing cancer therapy. The prevailing comment of clients
who have come in for a spa treatment while undergoing therapy was how nurturing a
visit to ORESTA organic skin care confectionery was for them.
We have wanted to help the cause but have struggled with a way to do this.
Do we donate a % of sales? a % of services? Do we fundraise? For which organiza-
tion or foundation? In the end, what feels right for us, is doing what we do best:
pampering.
If you, a friend or loved one is undergoing cancer therapy and would enjoy an
organic facial treatment, please contact us. We are committed to treating one
woman per week to a complimentary ORESTA treatment.
Oresta was calling to offer me a facial (I am going on Friday) but I offered to blog about this offer. She asked me to clarify that she and her staff will be offering this service to women undergoing treatment throughout the year - not just during October.
I am impressed and touched beyong words. Have any of you ever heard of anyone else doing this?
I told my spouse that, by coincidence, I had written in journal that morning that I would really like a facial. He said, "Tomorrow, could you write that you would really like a home renovation?"
More on men with breast cancer
One of every one hundred cases of breast cancer diagnosed will be male. And did you know that one in four men diagnosed with breast cancer will die from it? Two men who were diagnosed with breast cancer and bonded over it, joined to create a new organization called Breast Cancer Brothers to help support men going through this terrible disease.
An independent film is being made about their journey called "Times Like These"
There are no big research studies on male breast cancer. All their treatments are based on studies done on women. This is so sad.
October 24, 2009 -- ATX LiveStrong Challenge
Packing up after an incredible ride! Wishing we could prolong the moment!
Making the Impossible: Possible
Fans of the Tour de France and Livestrong will remember the "chalkbot" campaign last summer where cancer survivors and fans posted their messages of hope, inspiration and encouragement for American hero Lance Armstrong.
The message I sent "You Make the Impossible: Possible" expresses my deep feelings about the LiveStrong Challenge ride in Austin this past Sunday. All of you helped make the impossible, possible for me and thousands of others affected by cancer.
Think about this. When I finished chemotherapy in December of l998, before I even started radiation, before I started a year long process of reconstruction and physical therapy for frozen shoulder and lymphadema, I could barely walk up a hill. I was out of breath. It hurt to breathe, it hurt to walk. My feet were still swollen from steroids that -- at best -- helped squelch nausea and at worst -- sent me spinning around like Wiley Coyote.
Like every other cancer patient before and since then, I hung on, carried along on God's shoulders and through the love of friends. Sometimes all you can do is just soldier on and get through something. That is what I did.
You stayed with me on the ride, and with me through all the phases of recovery. This past Sunday, another joyous celebration of the impossible become possible. I cycled 65 miles up and down the hills surrounding Dripping Springs, Texas, past pastures, grazing goats and horses, past incredible vistas of the beautiful Hill Country all Texans love. You supported me with your wishes, your calls, your tweets, your love and your donations. You helped me raise more than $1200 for the cancer research programs sponsored by the Lance Armstrong Foundation. You are helping me to fight this incidious disease that fractures lives.
To all of you, my love and gratitude. Thank you from the bottom of my heart.
Jody
chemotherapy and the H1N1 vaccine
As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.
I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.
I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.
Today, the nurse who works with my oncologist called and told me to wait.
The reasoning goes as follows:
Chemotherapy suppresses the immune system.
The flu shot is meant to boost it.
Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.
Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.
This means that I will be waiting until November 10 for my H1N1 vaccine.
And washing my hands. A lot.
Tuesday, October 27, 2015
Its Monday
I have nothing to say. I mean I had a nice weekend. I got a lot of craft stuff done to get ready for the season that starts in a few weeks and runs to the end of December. I had several thoughts that flew in and out of my tiny mind as potential blog topics but decided to end up with a list of them instead:
- Ebola is not going to kill us all. You can't get it unless you are in contact with someone with the symptoms and there has to be some spread of bodily fluids. So stop scaring the crap out of everyone.
- The nurse who is in quarantine in New Jersey needs better treatment. A tent in a parking lot? Really? Its unheated as well. Get her to her house and quarantine her there. I agreee with the quarantine and completely disagree with the way its being done.
- There is a new test available today for screening for colon cancer. You get the test, get a sample in the privacy of your own home and send it off where they will see if the fecal DNA shows colon cancer signs in it. Two small catches: $599 and its not covered by most insurance and one of the doctors who discovered it, gets a royalty for each test sold. I have problems with the numbers part both the royalty and the lack of insurance coverage.
- If you live within 165 feet of a 5 lane roadway, you could increase your risk of sudden heart death for women.
- I am so done with pink this October.
Monday, October 26, 2015
Affordable Care Act and Cancer
Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.
Not a good answer.
And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.
Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.
This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.
"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.
According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."
However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.
However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.
Not a good answer.
And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.
Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.
This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.
"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.
According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."
However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.
However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.
what i would miss
I just did an interesting writing prompt from Old Friend From Far Away by Natalie Goldberg:
What about you?
"Tell me what you will miss when you die."The instructions were to write for ten minutes without censoring yourself. Here's what I wrote:
My kids
My spouse
My family
My friends
My dog
Beautiful fall days
Walks along the canal with my dog
Getting lost in a book
Taking a nap on a cold afternoon
Knitting with friends
The feeling of euphoria when I write something good
Music
Good food
Laughing
Wondering at art
A hot bath after exercise
Physical intimacy (all kinds)
The happy feeling when I unexpectedly run into someone I like
Learning new things
Aha! moments
Seeing people do good things
Being proud of my children
Noisy gatherings around my dining room table
Doing fun things for the first time
Doing familiar things that make me happy
Connecting creatively or intellectually
Making new friends
Having old friends and family members who 'get' me
Scrabble
Fresh starts
Clean sheets
Small kindnesses
Spectacular acts of bravery
Feeling proud of myself
The way the pavement smells after a summer rain
The possibility of tomorrow
What about you?
The end of Breast Cancer awareness month
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| My dad trying to obey the "no crying rule" before may mastectomy, wasn't easy for anyone. |
This is the end of breast cancer awareness month and it made me think (yes that can only mean I need to blog). BEFORE I got stupid dumb breast cancer I was a huge supporter of this cause, like massive. Just ask any team member of Cure or Bust and they will tell you how hard I tried to raise money for CNY Komen. I have a love for emails especially. I always wanted the team to focus on the celebration of life, whether it is the lives fighting, surviving or lost I wanted to celebrate their battle, nothing says celebrate more than Jello-O shots! I wanted people to go to the race and be empowered by the pink sea of survivors, to see their family walking next to them to show their support and to see the friends who are wearing tutus honoring their friends. The day is really incredible! Did you register yet? I owned pink tie dyes with ribbons and other paraphernalia to show support. I would have people say to me "When did you have breast cancer?" I would reply "NO NO NO I never had it I am just supporting the cause". I was all about breast cancer awareness before then WTF May 5th came and smacked me.
I had no clue what was going to happen but I knew I wanted to be a survivor. I only told very few about the lump, the mammo and the lumpectomy, why worry anyone when it was probably nothing. I still remember standing in my doctor's office and hearing her say "I had to look at the name 5 times on this pathology report". I knew I had fucking cancer she didn't have to say it. The blog was born! Literally, instantly I wanted it out there. Yes, the photos came after but the idea was brewing. I wanted to be public about it because that is how I was handling it. I was so scared because yes I knew women who won but I knew so many that died. I lost my mother from tragedy at 1 so the reality of my kids growing up without me was too fucking real. The harsh truth of my dad without my mom scared me for Tom. Death is fucked up and leaves an aftermath of pain that is embedded forever and I did not want that for my people. Plus I sparkle way too much!
So as I post on FaceBook or blog it's my way of spreading awareness of cancer. I want people to be aware of ALL stages and to hear so many different stories. Listen to Jackie, Ashley, Dolores, AnneMarie, Kate, Shari because their story by help you or someone you know. Yes if you actually read through my blog I do talk about other cancers but people I have breast cancer so that is what my focus is. I did not get the "easy" cancer I got CANCER. I was fortunate enough to have caught it early, but still suffering from all it brings. I have scars and surgeries and more doctor's appointments and tests then I ever want for anyone. Easy my ass and I got a big ass! I am doing all this STUPID DUMB BREAST CANCER for all those fighting, being diagnosed, and leaving this earth. I am raising money and awareness for them. I want people to see a small part of my journey and what the harsh reality can be. People walked away for the show with that and more. The pride in my family, my children, husband and friends eyes of being a part of this was awesome! They get it and they are my soapbox from where I yell, very loudly I might add.
Sunday, October 25, 2015
If you were told you were at high risk of getting cancer, what would you do?
So genomics is progressing. The newest research shows that through genomics they can account for the causes of 50% of breast cancer cases. They also state that if you are at high risk, you can lower your risk by maintaining a healthy lifestyle - good weight, not smoking etc.
"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."
"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."
So those statements beg a few questions.
So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle? Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?
My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.
When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.
I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.
"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."
"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."
So those statements beg a few questions.
- What would you do if you were told if you were at high risk of getting breast or any other kind of cancer?
- Does the high risk seem as much of a concern if you can lower it by maintaining a healthy lifestyle?
So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle? Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?
My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.
When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.
I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.
hold the duct tape
"Women with disabilities often experience health disparity. For instance, in a 2010 study of the barriers preventing women with disabilities from getting screened for breast cancer as often as is recommended, is, believe it or not, lack of physician recommendation. In other words, doctors don’t talk to women with disabilities about getting screened for breast cancer. This is often also the case for pap tests. In a Canadian study (PDF), women with disabilities reported often only receiving healthcare in the narrow area of what is directly related to their disability."
Did you know that women with disabilities often face huge barriers when it comes to breast cancer screening? A conversation with my friend Lene left my jaw on the floor (and I truly thought I'd heard it all). She's written about it on her blog, The Seated View. And be prepared, the duct tape reference is not a joke.
Going insane got no brain
Ok well the MRI showed I had a brain but whether it is on the fritz remains to be determined. It is hard to say when a cold is just a cold or if something brewing. After DX, whenever you get a headache, toothache, hang nail or backache you think "Mother of all that is evil it must be bad, it must be cancer". It is so difficult to figure out when to call the doc, which doc to call and whether it is really serious. The ache that has been there for more than 4 weeks probably should be address. Guess what, it actually could be just a pulled muscle from lifting all those chips or from stress. The problem is our head starts making us second guess every ache/pain/change in body. I would always tough it out and wait until the last minute now I have ALL my docs on speed dial. The problem is when do you call??? How do you call?? At this point I think Ghost Busters might be able to help me. I really feel like I am losing my mind, yes I may have lost it but now it is going haywire like serious craziness. Yet I know I am not alone, right please tell me I am not alone.
I have had some headaches, watery eye, head pressure and a bunch of other crap since last November they said nerve damage, OK fine. Well guess what it has not gone away and has only increased. Then BAM lost hearing, now its muffled with serious pressure. Some days the pain is horrible and I just want to cry. Add a little stiff neck and I am like WTF I must be dying (don't send flowers just yet!!). MRI says brain is still there and in good condition minus all the pot I smoked when I was young. Some inflammation but no tumors, well hot damn!!! Yet the pain and pressure and ear ringing is still there (or is it, maybe it is just my overacting). I was told by the ENT to take a muscle relaxer and call it a day, basically it was in my head. You get me here right?? You waffle between it is nothing to OMG its cancer which you had so you know it is impossible. The doc looks at you like you are nuts and maybe you are but damn there is no need to make me feel that way. You want it to be nothing and hope it will be but what if it is something! I think docs need to understand this and that you want to be healthy and fit into your before cancer jeans so bad!! Do you ever get pass the fear?? I do not think so ever. I have seen too many friends suffer and have been through enough to not be scared. So I find myself sitting and letting the pain build and feel all the symptoms just to prove to myself I am not making this up. Which it totally not fun, just saying. Going insane is not at all as enjoyable as I thought.
I am off to the neurologist next month and while I really hope he tells me I am ok it is stress or another skittle I am so scared it is something bugger. And what more is all I want is relief from the discomfort. Maybe I need a lobotomy or glasses or a vacation. YES that is it I need a vacation, who has a time share? I am not looking to head to the mountains in a closed up cabin for the winter with Tommy if you get my picture. The Queen must be looking to vacation with a princess!
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| Yes possibly |
I have had some headaches, watery eye, head pressure and a bunch of other crap since last November they said nerve damage, OK fine. Well guess what it has not gone away and has only increased. Then BAM lost hearing, now its muffled with serious pressure. Some days the pain is horrible and I just want to cry. Add a little stiff neck and I am like WTF I must be dying (don't send flowers just yet!!). MRI says brain is still there and in good condition minus all the pot I smoked when I was young. Some inflammation but no tumors, well hot damn!!! Yet the pain and pressure and ear ringing is still there (or is it, maybe it is just my overacting). I was told by the ENT to take a muscle relaxer and call it a day, basically it was in my head. You get me here right?? You waffle between it is nothing to OMG its cancer which you had so you know it is impossible. The doc looks at you like you are nuts and maybe you are but damn there is no need to make me feel that way. You want it to be nothing and hope it will be but what if it is something! I think docs need to understand this and that you want to be healthy and fit into your before cancer jeans so bad!! Do you ever get pass the fear?? I do not think so ever. I have seen too many friends suffer and have been through enough to not be scared. So I find myself sitting and letting the pain build and feel all the symptoms just to prove to myself I am not making this up. Which it totally not fun, just saying. Going insane is not at all as enjoyable as I thought.
I am off to the neurologist next month and while I really hope he tells me I am ok it is stress or another skittle I am so scared it is something bugger. And what more is all I want is relief from the discomfort. Maybe I need a lobotomy or glasses or a vacation. YES that is it I need a vacation, who has a time share? I am not looking to head to the mountains in a closed up cabin for the winter with Tommy if you get my picture. The Queen must be looking to vacation with a princess!
Saturday, October 24, 2015
Changing Narratives
For the longest time October would arrive with difficult memories of my father's death. When I was 24 he went into the hospital with severe headaches and then died within three weeks of small cell lung cancer that had metastasized to his brain. He was 52. My family's shock and grief felt so disabling I wondered how we would find our way again, collectively and individually.
But you do, because that is how love works through time.
Eventually October reclaimed its spot as one of the best times of the year - sparkling fresh air, cider, cinnamon, and little goblins dressed in sheets coming up the driveway with flashlights and parents in tow. Even in l998 October was still a month. That year it marked the beginning of my second course of chemotherapy, a milestone of sorts in my own cancer narrative. October marked the first (of two) times I particiatped in a Komen walk in an outrageously awesome t-shirt my beautiful sister produced just for the event. The shirt was my favorite color - purple. She had enough made so I could give them to the special men and women who'd done so much for all of us during treatment.
That's how love through time works.
And this year October changes again. All of us who care and write about lives affected by cancer sense a shift. Conversations about breast cancer are changing, thanks to the work of writers and truth tellers who speak honestly about their experience with breast cancer. While the changing conversation isn't fast enough to dampen the suffering in our midst we keep at it, louder and louder, because we can. And we must. I just realized yesterday (ah, some of us are slow) that those learning about breast cancer from their own diagnosis or that of a friend come into the experience bombarded with the pink images it took many of us years to deconstruct. Gayle Sulik, Ph.D., author of Pink Ribbon Blues, dedicated ten years of research, interviewing and writing to become an "overnight" success and change agent in breast cancer culture. We are all the wiser to remember the time it takes and collective work necessary to approach a tipping point.
A debt of gratitude to all of you truth-tellers for your honesty and advocacy.
jms
And a huge thank you to Liz Szabo, for the wonderful spotlight she provided to the conversations we're changing through #BCSM. Her write-up, with video: "Breast cancer survivor group is a social movement."
#BCSM co-moderators Deanna Attai, MD, Alicia Staley and I are incredibly honoroed. If you haven't checked Liz's other articles on her breast cancer and health issues please do so. Just this month alone has covered inflammatory breast cancer, breast cancer and pregnancy and ways to help breast cancer survivors in way that is informative, real, and immediate. I think she's one of a kind.
Also thanks to Liz Scherer (it's a Liz day!) for the awesome shout on her blog FLASHFREE: It's Not Your Momma's Menopause in: Hold Your Breasts; it's Breast Cancer Awareness Month.'
While I'm on Liz movement...add in:)
But you do, because that is how love works through time.
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| The Perfect Purple |
That's how love through time works.
And this year October changes again. All of us who care and write about lives affected by cancer sense a shift. Conversations about breast cancer are changing, thanks to the work of writers and truth tellers who speak honestly about their experience with breast cancer. While the changing conversation isn't fast enough to dampen the suffering in our midst we keep at it, louder and louder, because we can. And we must. I just realized yesterday (ah, some of us are slow) that those learning about breast cancer from their own diagnosis or that of a friend come into the experience bombarded with the pink images it took many of us years to deconstruct. Gayle Sulik, Ph.D., author of Pink Ribbon Blues, dedicated ten years of research, interviewing and writing to become an "overnight" success and change agent in breast cancer culture. We are all the wiser to remember the time it takes and collective work necessary to approach a tipping point.
A debt of gratitude to all of you truth-tellers for your honesty and advocacy.
jms
And a huge thank you to Liz Szabo, for the wonderful spotlight she provided to the conversations we're changing through #BCSM. Her write-up, with video: "Breast cancer survivor group is a social movement."
#BCSM co-moderators Deanna Attai, MD, Alicia Staley and I are incredibly honoroed. If you haven't checked Liz's other articles on her breast cancer and health issues please do so. Just this month alone has covered inflammatory breast cancer, breast cancer and pregnancy and ways to help breast cancer survivors in way that is informative, real, and immediate. I think she's one of a kind.
Also thanks to Liz Scherer (it's a Liz day!) for the awesome shout on her blog FLASHFREE: It's Not Your Momma's Menopause in: Hold Your Breasts; it's Breast Cancer Awareness Month.'
While I'm on Liz movement...add in:)
Another hidden side of breast cancer - male patients
Yes breast cancer can and does occur in men. Less than 0.1 percent of all breast cancer diagnoses are male (I think that's the number - its very low). Until I was diagnosed with breast cancer I had no idea men could get breast cancer. Then a friend's cat died of breast cancer. Basically any animal with the right physiology can get breast cancer.
So if you think its bad to get breast cancer as a woman. How do you think a man would feel if he walked into the breast cancer treatment area and its full of women? Or he had to go for a mammogram in the 'pink area' of the hospital?
I can't imagine what it would like to be dealing with a breast cancer diagnosis and feeling literally like the 'odd man out' in the women focused world of breast cancer.
I can think of numerous places and instances during my cancer treatment that I felt was very female focused. Even the exam rooms are filled with pictures, diagrams, and schematics for breast cancer diagnosis and treatment all focused on the female body.
But it happens, men do get breast cancer, and we should welcome them into our world and let them benefit from our experiences. If you know a man with breast cancer, please take a few minutes to reach out to him and see if you can help him in his breast cancer journey.
So if you think its bad to get breast cancer as a woman. How do you think a man would feel if he walked into the breast cancer treatment area and its full of women? Or he had to go for a mammogram in the 'pink area' of the hospital?
I can't imagine what it would like to be dealing with a breast cancer diagnosis and feeling literally like the 'odd man out' in the women focused world of breast cancer.
I can think of numerous places and instances during my cancer treatment that I felt was very female focused. Even the exam rooms are filled with pictures, diagrams, and schematics for breast cancer diagnosis and treatment all focused on the female body.
But it happens, men do get breast cancer, and we should welcome them into our world and let them benefit from our experiences. If you know a man with breast cancer, please take a few minutes to reach out to him and see if you can help him in his breast cancer journey.
Results
Some thought I could barely get 200 people at Pascale's, some thought that strangers wouldn't come, some thought they wouldn't drink (Pink Stilettos were sold!!), some thought NO ONE will come (OK the last one was me) but people came!!! So many friendly faces I wish I could have talked to all of you. Almost all my family (losers better come to the next one!), friends from Albany/Boston/Rochester seeing them made me so happy. People I have never met but am so thrilled to have now and survivors that all share a special connection. We estimate that close to 600 people came through Pascale's on Sunday, not all at once but at one point it was crowded. Everything went so fabulous, the staff at Pascale's is just incredible. Brian, the girls behind the bar, the extremely tall guy who made me feel dwarf-like, Deb and Neil you guys are all the bomb digity!! I hope that all of you who gave your email address use the $10 gift certificates because the food is incredible. My bouncers kept a tight watch on the door and did not let me down. The t-shirt crew held the back of the bar under control and even sold a TON of bracelets (my Sarah thanks so much sweetie). Nikki did her best to keep my lips nice and glossy. Tom maintained the crowd and even reminded me of some names I forgot, love that guy. Too bad MC was stuck in the back and doesn't know what the hell was going on! And then there is Genevieve...not sure what to say but she amazes me. I was so proud of the images she choose and stunned at how many. It is clear now how much they have helped me and now they have helped so many others who came through. My girlfriend Karen looked at me with tears in her eyes and said "I had no idea what you went through". YESSSS that is exactly what I wanted, the real side of stupid dumb breast cancer, drains, scars, pain, friends, family so much more than a pink ribbon.
I went to the bank and deposited the donations and tickets with such pride. We raised (after expenses like some prints, food) $10,876!!!! I am still getting and accepting donations for this event until the end of the month. So do not hesitate to write that check. This grand total will be divided between Stand up to Cancer and CNY Komen in Cure or Bust's name. Pretty friggin good for a little girl with stupid dumb breast cancer and an idea, right? The shirts and bracelets are still coming in because we have some shirts left over (going FAST!!) but that night we raised $1500, I want pictures of you people wearing those things!!!
I just want to point out that the Face Book page www.facebook.com/stupiddumbbreastcancer has 1354 likes. Every day more and more "LIKE" the page of course some little shits "unlike" it, wtf who unlikes a breast cancer page?? Insane I know, crazier is that people in Mexico, Argentina, England are all liking and talking about the posts. The blog has had OVER 50,000 views with audiences in Canada, Germany, Costa Rica, United Kingdom, Ukraine. I am blown away by these numbers and who I am reaching. I feel like this is such a huge movement. People want to see this real side to breast cancer. It tells me that I need to keep going with this, to infinity and beyond! Next is making Stupid Dumb Breast Cancer a non for profit, it is in the works people. Hard for me to sit still as much as my friends want me too:)
Thanks so much for riding this journey with me, I do not like being alone. I am looking into another show for those who could not attend. I will be posting the slide show too. Please join some of the events better yet ALL the events. Next one is "Stack for Racks" a poker tourney at Trapper's II in Minoa on November 5th, PLEASE let me know ASAP if you want in. I have so many ideas and events there is really something for everyone, no excuses! PLUS, I am sure you all will join my Race for the Cure team Cure or Bust. That race falls 1 year from when I started this fucking journey so I want a celebration to remember. Oh and I will play the "breast cancer" card for the next 10 years, Jen said I could!
Friday, October 23, 2015
beautiful night
Thanks to everyone who came to the Toronto launch last night.
My face hurts from smiling and my heart is so full it could burst.
And the bookstore sold out the books.
My face hurts from smiling and my heart is so full it could burst.
And the bookstore sold out the books.
Another case of the warm fuzzies
Now that we are past the age where the three martini lunch was an acceptable daily interlude, it is not acceptable for anyone to be under the influence of anything (other than a post-four hour meeting daze) in the work place.
Back in the late 70's and early 80's I worked in a restaurant that was a destination lunch place for a bunch of office park employees. We had cab company phone numbers next to the phone for those who could not safely drive themselves back to the office. Over the five years I was there, often working as a cashier, I watched the lunch checks go from three martinis to one glass of wine or a single Bloody Mary or other vodka based drinks. Times changed even then.
Later in the 1990's I worked for a British company and went to the UK regularly for week long trips. I was usually taken out to lunch at a local pub where I was expected to have a beer, or at least a half pint Shandy (lemon/lime soda with beer) with my meal. I usually declined because it would cause my jet lagged body to demand a post meal nap instead of working for the afternoon. In the US, I think its very rare that alcoholic beverages are consumed at lunch during the business day any more. I don't think any work place is immune to impaired employees but some of them have more long lasting implications than others.
When we go to the doctor we make a few basic assumptions, that they are trained and know what they are doing, they won't hesitate to consult their peers when they are unsure, and they are sober. While the majority of doctors would report their impaired colleagues, 17 percent actually have dealt with one. Um, do the math, that's one in six. I'm not picking on doctors and actually believe that they are probably one of the more conscientious industries. They are probably less likely to go out for fancy lunches to celebrate a business deal, or even have time to do more than grab a quick bite during the day. But when its my body and health that's being treated here, I would like the basics.
What astounded me about this article is that the numbers are so high. What it doesn't state is if the 17 percent reflects over their career they have dealt with impaired employees or over the past five years. We need a little more information here before becoming concerned. But I am already concerned. Should I start sniffing their breath?
Back in the late 70's and early 80's I worked in a restaurant that was a destination lunch place for a bunch of office park employees. We had cab company phone numbers next to the phone for those who could not safely drive themselves back to the office. Over the five years I was there, often working as a cashier, I watched the lunch checks go from three martinis to one glass of wine or a single Bloody Mary or other vodka based drinks. Times changed even then.
Later in the 1990's I worked for a British company and went to the UK regularly for week long trips. I was usually taken out to lunch at a local pub where I was expected to have a beer, or at least a half pint Shandy (lemon/lime soda with beer) with my meal. I usually declined because it would cause my jet lagged body to demand a post meal nap instead of working for the afternoon. In the US, I think its very rare that alcoholic beverages are consumed at lunch during the business day any more. I don't think any work place is immune to impaired employees but some of them have more long lasting implications than others.
When we go to the doctor we make a few basic assumptions, that they are trained and know what they are doing, they won't hesitate to consult their peers when they are unsure, and they are sober. While the majority of doctors would report their impaired colleagues, 17 percent actually have dealt with one. Um, do the math, that's one in six. I'm not picking on doctors and actually believe that they are probably one of the more conscientious industries. They are probably less likely to go out for fancy lunches to celebrate a business deal, or even have time to do more than grab a quick bite during the day. But when its my body and health that's being treated here, I would like the basics.
What astounded me about this article is that the numbers are so high. What it doesn't state is if the 17 percent reflects over their career they have dealt with impaired employees or over the past five years. We need a little more information here before becoming concerned. But I am already concerned. Should I start sniffing their breath?
Thursday, October 22, 2015
serendipitous cycle
I feel like a little kid again.On August 15, I won a bike.
I was at the Ottawa Folk Festival and I bought three raffle tickets for five dollars. I told several people that I planned to win the third prize - a Kona Africabike 3, donated by McCrank's Cycles.
And then I did!
And here's the interesting part. I really, really wanted a new bike. I've been riding the same diamond frame (commonly called a men's bike) hybrid for almost twenty years. It's probably the wrong size for me and had started causing me neck and shoulder pain when I rode for more than a few minutes.
Over the summer, I test rode at least a dozen bicycles from four different bike shops. I came close to buying three times but each time, something held me back.
Our finances are really tight right now and I would have to commit to any bike I bought for a long time. And although several bikes I tried seemed fine, I didn't really love any of them. I had begun to think that I was just being too picky. I had pretty much resigned myself to spending a bit of money to fix up my old bike when the week end of the Folk Festival came around.
And then I won a bike that was nothing like any of the bikes I'd test ridden. And I love it.
With it's heavy frame (42lbs!) and big tires, it feels solid and safe to ride. I love how the coaster brakes (the kind where you stop by pedalling backwards) allow me to slow down gradually (there's a hand brake that helps me to stop quickly when I need to). I really only ever used seven speeds on my old bike, so I haven't really minded that my new bike has only three. The step-through frame means I can wear whatever I want to go cycling (and means that I have fewer excuses not to ride). And the "sit up and beg" style of riding means no pain and whole new way of taking in the world.
It's so much fun to ride! As I did all those test rides this summer, I kept waiting to fall in love and it just didn't happen. It turns out that the bike I needed was one I had been refusing to even consider (and that some of the features I had rejected are the ones I love the best).
For the first few days after I brought my bike home I'd sneak out to the garage just to admire it. I've even named it Steel Horse (because it's such a beast and after the song "I Am An Excellent Steel Horse" by Rock Plaza Central, a band I heard for the first time at this year's folk festival).
I've noticed that people smile at me when I ride my bike. I think it's because I'm grinning like an idiot.
When I was seven years old, I had a red bike with a yellow banana seat. That was my first bike and I've never loved another bike as much. Until now.
For every two Africabikes that are purchased, Kona donates one to it's Basic Needs program in Africa (these bikes were designed to be virtually maintenance free and to be easily ridden on the most rugged of roads). These bikes have been used to help health care workers to deliver HIV/AIDS drugs and to enable girls to travel longer distances to get to school.
If you live near Ottawa and are thinking of getting an Africabike (or any Kona bicycle) for yourself, please go to McCrank's Cycles. Peter Conway is a really good guy (and very generous!), who provides great bike service. He deserves your support.
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