Christmas is not about gifts. It is supposed to be about the spirit of giving and enjoying the season and all that. However Christmas gifts are given and received and are supposed to be enjoyable. But not always.
There are always the BAD gifts. You know the ones you want to regift them. That really ugly sweater. The electric wine bottle opener. The seventh calendar for the same year. The ham that was the biggest joke at a Yankee swap last weekend.
Or the gift of spending too much time with family members where all those old childhood issues begin to resurface as the time lengthens.
But then there are the nice ones. The things you really wanted and appreciate. Or the fun and unexpected ones.
Or then there are the other gifts - the unappreciated ones like back pain, foot pain, and more. I'll take a pill and a nap.
Saturday, January 31, 2015
Overtreatment issues
There is new evidence that the risk of leukemia after breast cancer treatment is double what previously thought to be. It was stated at 0.25% but new research shows it is more like 0.5% and the risk continues for ten years, not slowing down after five. So the new advice is not to treat with stage 1 cancers with just in case chemotherapy or radiation give that the risk is doubled.
In addition, while the new recommendations for radiation are to cut back from the usual five to seven weeks to three weeks for early stage cancers, many doctors are not making the change. The benefits are in cost savings, fewer side effects, and improved quality of life for the patients. (From the patient's perspective (me) the biggest problem with radiation is having to go EVERY day for week upon week.) Many doctors and patients seem to have the reaction to do as much as possible in cancer treatment.
I realize that cancer treatment is of the slash, poison, and burn variety, even in this modern era. But it would be nice if the elusive 'them' would figure out ways to heal us without killing us off int he process. I feel like a cancer diagnosis is a challenge to both get through the diagnosis AND the treatment. Maybe we need a little more progress/research in this area.
In addition, while the new recommendations for radiation are to cut back from the usual five to seven weeks to three weeks for early stage cancers, many doctors are not making the change. The benefits are in cost savings, fewer side effects, and improved quality of life for the patients. (From the patient's perspective (me) the biggest problem with radiation is having to go EVERY day for week upon week.) Many doctors and patients seem to have the reaction to do as much as possible in cancer treatment.
I realize that cancer treatment is of the slash, poison, and burn variety, even in this modern era. But it would be nice if the elusive 'them' would figure out ways to heal us without killing us off int he process. I feel like a cancer diagnosis is a challenge to both get through the diagnosis AND the treatment. Maybe we need a little more progress/research in this area.
i'll take it.
No nausea.
No bad taste in my mouth.
No rage or sadness.
No aches and pains.
I'm just very, very tired.
Sharing the burden
Recently UPS was criticized for dropping employee health insurance coverage for spouses who are eligible for health insurance through their employers. But that's only 15,000 people. The majority of their drivers and other employees are covered through Teamster's Union benefits so they will not be affected by the change.
A recent article called Employers Play Obamacare Blame Game discusses reactions to the shared costs complaints and how other companies are reacting to the upcoming changes.
The whole point of mandatory health care is to have a healthier population. This requires change. So of course employers are going to start shifting burdens around as much as they can. Companies which have provided the most benefits I am sure will be some of the first to start making changes.
There is a separate requirement, starting in 2018, where employees who offer richer policies will be required to start shifting more of the costs to employees or start paying a penalty.
People are dying or going bankrupt due to lack of medical care or the high costs associated with it. We need to share the burden and can't assume our employers or the government will hand us everything we need. Its part of taking our place in society and being a contributing human being.
There are those, including me, who face health or other issues, who can't contribute as much as others. But that doesn't make them any less of human beings.
If you do not like the current and upcoming changes for whatever reason, then you can do your part by cooperating with the existing legislation and work to find ways to change it.
What this is all called is change. Get over it. Change is needed to make health insurance more affordable and health care more available. Our current system does not work. Insurance companies, not doctors, are making decisions about the health of people.
A recent article called Employers Play Obamacare Blame Game discusses reactions to the shared costs complaints and how other companies are reacting to the upcoming changes.
The whole point of mandatory health care is to have a healthier population. This requires change. So of course employers are going to start shifting burdens around as much as they can. Companies which have provided the most benefits I am sure will be some of the first to start making changes.
There is a separate requirement, starting in 2018, where employees who offer richer policies will be required to start shifting more of the costs to employees or start paying a penalty.
People are dying or going bankrupt due to lack of medical care or the high costs associated with it. We need to share the burden and can't assume our employers or the government will hand us everything we need. Its part of taking our place in society and being a contributing human being.
There are those, including me, who face health or other issues, who can't contribute as much as others. But that doesn't make them any less of human beings.
If you do not like the current and upcoming changes for whatever reason, then you can do your part by cooperating with the existing legislation and work to find ways to change it.
What this is all called is change. Get over it. Change is needed to make health insurance more affordable and health care more available. Our current system does not work. Insurance companies, not doctors, are making decisions about the health of people.
Back to reality
While we are back from vacation, I am trying to stretch out the relaxed feeling for a few more days - until I go back to work Tuesday morning.
What is reality?
Its starting to come together. I am ignoring the weeds in the garden for now as well.
Sigh. I like vacation better than reality.
What is reality?
- Getting on top of my list of doctor appointments.
- Refilling prescriptions needed
- Return library books
- Catching up with friends
- Laundry
- Grocery store
- Unpacking
- Take care of outstanding volunteer work for two organizations.
- Making the cat understand we did not leave him FOREVER and are BACK for a long time.
- Taking the car for a very overdue oil change (don't tell my husband)
- Planning for a visit from college friends from out of town.
- Thinking about upcoming medical adventures (yuck)
- Planning for my upcoming fall schedule of craft shows
- Making all my items to sell at the craft fairs
- Planning for our next trip out of town (family vacation)
Its starting to come together. I am ignoring the weeds in the garden for now as well.
Sigh. I like vacation better than reality.
No surprise here: Institutional Corruption and the Pharmaceutical Industry
The systematic corruption of medical knowledge, ranging from clinical trials and new diagnostic categories through practice guidelines to physician prescribing practices, is highlighted in a special fall issue of the Journal of Law, Medicine & Ethics (JLME, 41:3).
Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).
I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.
The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:
"....how pharmaceutical marketing also distorts medical practice, and how drug firms are even funding social network websites for doctors in order to quietly track their opinions on issues that affect their bottom lines."
And you thought NSA was bad about spying on US citizens.
This next bit was taken from one of the articles by Dr. Marc Rodwin:
We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.
Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.
So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.
Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).
I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.
The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:
"....how pharmaceutical marketing also distorts medical practice, and how drug firms are even funding social network websites for doctors in order to quietly track their opinions on issues that affect their bottom lines."
And you thought NSA was bad about spying on US citizens.
This next bit was taken from one of the articles by Dr. Marc Rodwin:
We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.
Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.
So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.
But I dont want to!
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!
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!
Happy Halloween!
Today is Halloween. There should be no more Pinktober. There should be lots of kids around here dressed up in Red Sox uniforms with fake beards. There should be no more Pinktober. There should be candy bowls everywhere making dentists cringe. There should be no more Pinktober.
I am wearing an orange shirt and black pants and sweater to work to add to the mood. If I can find my hat from Cirque du Soleil, I'll bring that a long as well. There is no Pinktober.
I'm just happy all the Pinktober crap is over. Let's see if we can minimize it for next year.
I am wearing an orange shirt and black pants and sweater to work to add to the mood. If I can find my hat from Cirque du Soleil, I'll bring that a long as well. There is no Pinktober.
I'm just happy all the Pinktober crap is over. Let's see if we can minimize it for next year.
Heebee jeebees!!!!
Do you ever wonder about new cancer treatments and their potential side effects? As medical research capabilities advance, so do the weird things they do to our bodies. Surgery used to be where they cut you open and take out the bad things. Now they leave little markers behind or radiate you (intraoperative radiation) while you are sleeping.
I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.
Nano particles sometimes are used as carriers of medicine but I hope they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????
I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.
What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.
I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.
Nano particles sometimes are used as carriers of medicine but I hope they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????
I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.
What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.
third row from the top, second from the right
"gleeBE the Musical is the story of a group of talented, ambitious young people vying to get into the fictitious Arts Sanctuary school in the Glebe. GNAG’s spring theatre production, tells the story of their quest for this all-too-often elusive goal."
(Note: The Glebe is a neighbourhood in Ottawa, Ontario).
we are a community. and we need to be heard
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I was going to post about Blog Out Loud Ottawa (#boloottawa) but that's going to have to wait because I want to tell you all about something that's happening tomorrow.
The text reads:
"The Honourable Dr. Hedy Fry, Member of Parliament for Vancouver Centre and Federal Liberal Health Critic, will be joined by the Canadian Breast Cancer Network to discuss the tabling of her Private Member’s Bill calling for a National Metastatic Breast Cancer Day on October 13th of each year. The Canadian Breast Cancer Network will be represented by Ms. Niya Chari, Government Relations Manager. Ms. Laurie Kingston will represent the Metastatic Breast Cancer community."I paused for a moment at the description of my role at the table but then realized how very accurate it is. As much as I wish I didn't have metastatic breast cancer, I am very proud to consider myself part of the MBC community. I'm among some very good, smart, organized, supportive, strong advocates for change.
Metastatic Breast Cancer Awareness Day has already been designated by the US Congress and Senate. A Canadian MBC Awareness Day won't effect change on its own but it's a step in the right direction.
a bright light lost
Smart, funny, creative, talented Sara has passed away.
I only knew her as an online presence (although we did once spend more than an hour on the phone together) but I am grieving tonight and for all the people that love her.
I am told that Sara loved red wine and good tequila so if you partake of either of these tonight (and even if you don't) please raise a glass in her honour.
I am going to put on the lava earrings I bought from her (they are my favourites).
Damn. Cancer really sucks.
Cancer - is there an app for that?
Was I nauseated: yes. Couldn't even stand to see the word.
What was my temperature? My what? Does this mean I have to get up? For real?
The pain ranking was elementary, my dear Watson. You expressed your pain in a series of smiley faces that ranged from the ubiquitous and perfectly happy yellow smiley face to the bilious, slimy green one with yes, TEARS. If I'd ever felt that badly I certainly wouldn't have been writing on my patient intake form. I'd have been in an ambulance.
Time passes. Things change.
When our medical system evolves to the place where it it totally patient-centered the necessary symptom management should easily be accomplished via an app that is tied in to your cancer treatment center. Yes, well.
Theoretically apps should make things easier. For you. That's the point of all this and I don't know that for sure or what your experience is with them. Our question tonight on #BCSM is this: how are you using apps to help manage your cancer treatment? Which ones are you using? How are they facilitating your conversations with your doctor? Are you using any now that treatment is over?
My friend Jennfer Texada (@JennTex) at MD Anderson also sent me this lisT: http://www.mdanderson.org/publications/focused-on-health/issues/2015-july/mobileappscancer.html. The list includes a number of prevention apps from Livestrong and the American Cancer Society as well as the ASCO programs mentioned above. Keep in mind this isn't a conversation about the quantified self movement, we can chat about that another time if you like, but cancer specific apps that are helping you manage your disease. Another good one is NCCN guidlelines, a breast cancer diagnosis guide available from breastcancer.org, and an encyclopedia of treatment terms via Livestrong. These are available on iTunes.
We'll look forward to talking with you tonight at 9 pm ET/6 Pacific.
For now, let us know what we need to add to the list!
--jms
isn't this lovely?
I'm still feeling crappy, so I thought I would share something that really makes me smile.
I met Claudia at the 2009 Conference for Young Women Affected By Breast Cancer. Every time I saw her, she was wearing a very different and very funky hat.
This one, made from coffee filters was one of my favourites:
When Claudia was diagnosed with breast cancer, she launched the She Arts Project: "a collaboration with 30+ Artists with photographs from Meg Luther Lindholm."
The photographs eventually became part of an travelling exhibit. You can see more of them here.
I love this kind of thing.
I met Claudia at the 2009 Conference for Young Women Affected By Breast Cancer. Every time I saw her, she was wearing a very different and very funky hat.
This one, made from coffee filters was one of my favourites:
When Claudia was diagnosed with breast cancer, she launched the She Arts Project: "a collaboration with 30+ Artists with photographs from Meg Luther Lindholm."
The photographs eventually became part of an travelling exhibit. You can see more of them here.
I love this kind of thing.
inspired by Life
I rarely read the Life section of The Globe and Mail. In the mornings, I tend to skim the front section over breakfast and then get the rest of my news from the radio and online. However, today, as I was waiting for something on the stove, I grabbed the Life section and found several articles to be of interest.
I didn't know about modern Superheroes, who don costumes to patrol the streets or do good works. These guys are proud of who they are and they think they're pretty cool, too. "I'm not a fat kid in someone's basement or some geek living out a fantasy," says a caped crusader based in Vancouver, who calls himself 'Thanatos'. Dunno. Seems a little odd to me.
I am now worried about the fact Bhisphenol A can be absorbed through cash register receipts and water pipes as well as through food.
I have seen evidence of knitted graffiti in my own city but had no idea it had become a world wide phenomenon until my Danish friend M. sent me a link to an article about "craftivists" in Copenhagen. Now I can't help wondering, if it's in the Life Section of the Globe, is it still subversive?
I learned that men undergoing vasectomies can sometimes see a puff of smoke coming from their groin area during the procedure. What would make that happen?
I was reminded that yoga will enhance my cardio performance and that exercise can help stave off diabetes and heart disease. What I didn't know that short, intense burst can be especially beneficial. Now that got my wheels turning.
And I was moved to tears as I read how one woman lost her precious son to suicide at the age of 17. My spouse and I have both struggled with depression at various points in our lives, as have family members. I do worry about my boys. I want to protect them from everything. Hopefully, love, patience and all the right kinds of support (along with a generous dose of luck) will lead them to live happy and healthy lives.
What did you learn in the news today?
how i've changed
When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.
Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts out."
I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).
And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.
Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.
free to a good home (part 2)
A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:
Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.
Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."
Imstell jumped in with the following:
"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:
FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.
WANTED swimming prosthesis. Any size large enough to hide my belly.
These had me laughing out loud but I think we might actually get something like this going.
Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.
Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.
We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.
some further and disjointed thoughts on my blogher09 experience
A non-virtual connection with Melissa from Stirrup Queens (and author of "Navigating the Land of If"). We are both holding Nora's head on a stick.
1. If Twitter was played a role at last year's BlogHer conference, this year it was front and centre.
Many of us followed what was happening in other sessions we attended by following the keyword (called a hashtag with a #sign) blogher#09. These are my tweets from the session I attended about "Online Safety for Your Kids Who Are Online Themselves" (I had expressed in my previous post the concern that it would be all about scaremongering but was delighted to find that it was not):
"if you are an engaged parent you have less to worry about in terms of sexual predation online" #blogher09 session on online kids.
it never occurred to me to worry about kids taking pics at my son's sleepover b-day party. should i have? #blogher09 kids online session.
"every technology brings with it new fears." the take away - don't panic! i love it. panel on kids online #blogher09 do you post photos of your kids online? on facebook? flickr? #blogher09
"identifying information that your kids put online has NO correlation with sexual predation." #blogher09
"reputation management" never heard this before in online context. interesting. #blogher09. your photos and words may come back on you, kids
"we are tethering our kids" "we are raising our kids in captivity" - this is the way times have changed. #blogher09.
2. In the closing keynote, the subject came around again, to Twitter. One commenter likened her Twitter community to a support group "I think the women I've met online in the pregnancy loss community have saved my life" (I didn't get her name or blog. Let me know if you did). A powerful statement, but I can relate. She went on to say that support groups are not available 24/7 the way that an online community can be.
3. One of the speakers also observed that most people get started blogging because of someone they know in their "physical life." I thought that was interesting, because it was my spouse (a non-blogger) who introduced me to the blogosphere.
4. Another favourite keynote comment (again, if you know who said this, do let me know): "People with higher levels of income tend to be online. We need to be vigilant that our online communities are not recreating or reinforcing existing inequities."
5. As you can see, I found the content to be very rich and thought provoking this year, despite the size of the conference.
6. I do worry that some people spent so much time tweeting that they missed connections with real people or taking in the discussions occurring around them.
7. One of my favourite Twitter moments occurred when "phdinparenting" lamented her dislike for American beer. She posted about our interaction on BlogHer. It really tickled me that I could be of help. There were lots of those kinds of tweets, throughout the conference.
8. I wish the bookstore had been in a different location. One person suggested in a conference feedback thread that the bookstore would do better closer to registration. I suggested that book signings take place during cocktail parties, in the middle of the action (and of course it wouldn't hurt if free cocktails made people want to buy more books). The conference organizers have acknowledged that the placement of the bookstore in the far corner of the Expo hall was a mistake (too far out of the way. And who wants to buy a book when they are surrounded by mounds of free stuff?). While I do understand how experiments can fail (and how it must have seemed like a good idea during planning) I just wish that this particular year (when I schlepped a bunch of books in my suitcase) had not been the one where the bookstore flopped.
9. Elisa from BlogHer made an observation (in a tweet, of course), that she is trying to learn the distinction between things that are "wrong" and things that are just not her "cuppa tea." That's how I feel about the karaoke during the Friday night cocktail party. I hated it. However, others seemed to be having fun (perhaps I am just getting old), so I got myself a hot date and went to find a patio.
10. I have other thoughts but Sassymonkey and Blondie expressed them already. Go read their posts.
I said many times before going that BlogHer09 would be my last. I hadn't even unpacked my suitcase before I'd begun to fantasize about getting to BlogHer10 in NYC. Anyone want to drive down from Ottawa and share a hotel room with me?
Why should care needed at a second cancer diagnosis need to be debated?
Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any different than any other cancer diagnosis?
As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.
When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.
As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.
When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.
i bought a swimsuit
And I posted about it for BlogHer.
I won't say the search wasn't traumatic:
I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.
You can read the rest of the post here. I even posted a picture of myself, wearing the swimsuit.
I didn't get to far on my to-do list this month but these are accomplishments (the doing and the writing) of which I am proud.
So what did I do wrong?
There is a new study out there saying that half of all breast cancers can be prevented. So what did I do wrong? That's what I feel. When I first read this I thought that its good news. But then I started thinking. What did I do wrong to get breast cancer before 50? Is it some how my fault?
I eat a good diet, I get exercise, blah, blah, blah. And there I end up with cancer. Twice. Maybe its my elementary school which is currently being turned down because its full of PCBs. Maybe because I stayed up late, smoked, and drank some. Who knows. But don't make it my fault.
I eat a good diet, I get exercise, blah, blah, blah. And there I end up with cancer. Twice. Maybe its my elementary school which is currently being turned down because its full of PCBs. Maybe because I stayed up late, smoked, and drank some. Who knows. But don't make it my fault.
But then I decided what I really don't like is the title of the article I first found: "Up To Half Of All Breast Cancers Are Preventable". That article was based on an article written in CA, A Cancer Journal for Clinicians where the original article is called "Priorities for the Primary Prevention of Breast Cancer" . Its all in the wording. Take the blame away from the patient please.
If you read the original article, it focuses on prevention options such as exercise, healthy weight, alcohol consumption, and more. Patients who drink alcohol, do not exercise, and/or maintain a healthy weight, have a greater risk of developing breast or other types of cancer. That's helpful.
Before breast cancer, I was thinner, exercised and I less to drink about, so go figure
If you read the original article, it focuses on prevention options such as exercise, healthy weight, alcohol consumption, and more. Patients who drink alcohol, do not exercise, and/or maintain a healthy weight, have a greater risk of developing breast or other types of cancer. That's helpful.
Before breast cancer, I was thinner, exercised and I less to drink about, so go figure
3 truths
No one can understand hot flashes unless they have experienced one.
It is so much easier to appreciate the beauty of one's own community when viewed through a visitor's eyes.
This is the definition of good friends: You don't think twice about letting your kid go to their place for dinner wearing pajamas. And when you get there you discover that their kid is still in pajamas too!
It is so much easier to appreciate the beauty of one's own community when viewed through a visitor's eyes.
This is the definition of good friends: You don't think twice about letting your kid go to their place for dinner wearing pajamas. And when you get there you discover that their kid is still in pajamas too!
photo: M. Slavitch
recipe for low-tech fun
1. Take down kids' playhouse that has been up for almost a decade.
2. Leave dogs unsupervised in back yard.
3. Set two six year old boys up with sprinkler and water slide.
4. Leave six year old boys unsupervised for two minutes.
5. Find small lake filling hole previously dug by dogs.
6. Consider becoming annoyed but remember how much fun you had playing in the mud as a kid.
7. Sit and knit while boys dip their hands in the water.
8. Watch as boys wade into mud hole.
9. Listen to imagination game as boys run mud through their fingers.
10. Observe the inevitability of mud in fingers leading to mud covering bodies and faces.
11. Intervene only when mud is being flung against the house.
12. Watch boys rinse mud off house.
13. Interrupt game only when it is time to leave.
14. Ignore pleas for five more minutes.
15. Hose boys down.
16. Drop one boy off at home.
17. Apologize for mud encrusted in ears and other places.
18. Smile every time you think of those two boys covered in mud.
The making of a princess
Tomorrow is the day that my mother drove around the block 3 times making my dad nuts, then into the hospital to push me out like she was a pro. My father barely got into the waiting room before they called him to say “It’s a GIRL”. I remember it like it was yesterday, no just kidding my dad loves to tell it. My brother loves to say how pissed I was a girl while my sister was so happy equaling yet another fight between them. The day of your birth is so significant yet it has taken me years to really feel good about it. A good breastie and I were taking about why I do not talk about my mom’s death here and I said it was because it has nothing to do with cancer. She told me I was wrong (she does love telling me that), that her death has shaped me into how I am and how I took on cancer. And shit she is right, that damn downstate girl! There is 9 years between my sister and 10 between my brother and I so while I may have been an opps baby I know there was a miscarriage between the siblings and me which means I was their hope for a baby. That being said I can image how happy they were to
have a real princess born. My first birthday must have been a celebration, just wish I could
remember. It was days after that my family was hurt with the most devastating, life changing event.
I always hated the term “I lost my mother” I didn’t lose her at all she was taken. Although as a child I would pretend she had amnesia and was living in Solvay and I would run into her and she would see me and all her memory would come back. Guess Grandma Jennie should have eased up on the “General Hospital”. I have a friend that died from drugs, a friend that died from a boating accident, an uncle that died from bad health and 2 grandmothers that died from age related deaths. While those were all hard to deal with they are life lessons that I could with time understand. But there is no explanation for evil.
I always hate when people ask “how did your mom die” because they expect car accident or cancer something “easy” (this is sarcasm there is no easy death). I hate it because the look on their face after I tell them is so intense and they feel so bad. I have found that blurting it out seems the best way. My mother was murdered, taken from us by an evil man. Literally kidnapped, rapped and thrown away
like trash. There is never an easy way to say that, never. There is not enough therapy in the world to help my family get “over” this. We will never get over it, we just get through it. I will never believe
that everything happens for a reason that is bull shit to me. I do not believe that god had a plan for us because this was evil there is no plan for evil. I have no room for humor here and find no joke in this. It is the one thing in my life I will never be able to laugh at. What I do believe is that how we get back up after we fall defines us. And trust as a one year old this was like falling down 100 flights of stairs. I will not speak for my father, sister and brother as they had to see this daily while volunteers searched through cold waters for days to find her. This was 1973 and these things did not happen or better yet our media didn’t talk about it. So it was in fact in the paper 2 times a day while being broadcast on the TV all the time. I think their pain is obvious and that is their stories not mine. But please do not think they ever got over this, ever. Hurt this deep shapes us into who we are that compiled with our genes makes us the people we become. It makes or breaks us and that is just a fact.
I do however believe that we are all part of the nature/nurture effect, you know psych 101. I was raised in the most loving home where my siblings fought over me and who loves me more. Where my father, grandparents, godmother, cousins and family friends treated me like a princess. That was the best way to nurture a child whose mother was stolen from her. However, there is no one in that group that was a hard ass, tough, smart mouthed, strong willed person because that was my mother. She was the one who organized Sunday dinners, smacked my siblings with a wooden spoon (she was so cool), gave her piece of mind and was strong yet loving at the same time. I became her through nature, I got those genes. Had she been able to live her life I think we would have butted heads A LOT. It was her way or the highway and you did not by any mean mess with her. I know that I am her because every single person in our family and her friends tells me so and every time they do I get strength from that. So while this part of my life isn’t about cancer it without a doubt has been why I choose to deal with it this way.
My mother was a community leader and that is something I am so proud to have inherited. I did not know her or how she handled herself, so I could not learn through actions. This is just who I am my mother’s child. Had she been her to hold my hand well I refuse to go there because she wasn’t. What I can do is feel her angel wings flutter by my side hovering ever so close (ok that part made me cry). Now I have no idea if she loved glitter or stilettos (she was way tall and my father is way short so I am guessing not) or even if she would love a tiara. That’s ok by me cause after all there really can only be one sparkly princess in the family and I am gladly taken that role.
Friday, January 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.
getting a little help to ease the way out
Few topics are as controversial as assisted suicide. It's currently illegal in Canada but recently, a Canadian woman with an irreversible debilitating illness travelled to Switzerland, where the group Dignitas provides assistance with suicide, legally.
I think most of us have contemplated our own deaths. When you live with metastatic cancer, it's impossible not to do so. I'm hoping that moment for me is in the distant future, but I find the prospect of a long, lingering death from cancer to be terrifying. However, is it more terrifying than the prospect of death itself?
I differentiate that from euthanasia because I think the term I use clarifies the willing and conscious participation of the person facing death. Am I kidding myself that this is a distinction that can be maintained?
What would you want to do when the end comes?
I'm certain that I believe assisted suicide should be legal. I don't know what I would do, if faced with a choice.
I think most of us have contemplated our own deaths. When you live with metastatic cancer, it's impossible not to do so. I'm hoping that moment for me is in the distant future, but I find the prospect of a long, lingering death from cancer to be terrifying. However, is it more terrifying than the prospect of death itself?
I differentiate that from euthanasia because I think the term I use clarifies the willing and conscious participation of the person facing death. Am I kidding myself that this is a distinction that can be maintained?
What would you want to do when the end comes?
I'm certain that I believe assisted suicide should be legal. I don't know what I would do, if faced with a choice.
Day Two of Pajama Girl
More pajamas for me. To continue yesterday's sagas, I finally got out of my pajamas in time to take my younger niece and nephew shopping with my husband. The kids were happy with books, ice cream, and a music store where a weird piccolo was purchased. We came home in time to watch a movie with popcorn. Then we proceeded back to my parents to eat left overs. After which I took my older niece shoe shopping for her birthday.
I was tired by the time we came home so it was pajama time again. Today I am still in my pjs at 11 am and promise to take a shower shortly before going to an early dinner.
The reason for my pajama girl discussions is the contrast in my health from a year ago. Last year I was just diagnosed with RA and fibro and had much more energy and capacity for doing things with others.
What a change a year makes. I need more naps. I need more rest. I have less energy. I just get damn tired too often. Crap.
Today I will go to the early dinner and come home for PJ time again. Tomorrow life might begin to return to normal as I will stay home except for a quick trip to the gym.
I was tired by the time we came home so it was pajama time again. Today I am still in my pjs at 11 am and promise to take a shower shortly before going to an early dinner.
The reason for my pajama girl discussions is the contrast in my health from a year ago. Last year I was just diagnosed with RA and fibro and had much more energy and capacity for doing things with others.
What a change a year makes. I need more naps. I need more rest. I have less energy. I just get damn tired too often. Crap.
Today I will go to the early dinner and come home for PJ time again. Tomorrow life might begin to return to normal as I will stay home except for a quick trip to the gym.
Its a life, not a fight
Cancer is not a battle, or a war, or anything more than someone's life. Finally there is some research backing me up. New research says that calling cancer a fight can be negative for the patient. Yes, negative.
War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.
President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.
So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.
All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.
War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.
President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.
So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.
All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.
A trip down memory lane
Back in 1971-2, half of all cancer patients lived one year. Now, in the UK at least, half of all cancer 'sufferers' (how is that for a horrible term?) live for ten years. I would assume the rates are similar, or even better in the US. But even in digging around in the National Cancer Institute's website, I could find the data.
The actual quote is:
"The analysis showed that in 1971-2, 50% of people diagnosed with cancer died within a year. Now 50% survive for at least a decade - up from 24% in 1971-2.
But the findings, based on the outcomes for more than 7 million patients, also showed that for some cancers, survival rates were still very low.
For example, just 1% of pancreatic cancer patients and 5% of lung cancer patients can expect to survive for 10 years."
So there is good news and bad news mixed together. But it does show a huge improvement in cancer treatment and research.
The goal is to have it increase to 75% survival rate for ten years. Its not just treatment and research but also screening and earlier diagnosis which have come in to play.
So progress is good. It shows we how far we have come. But we also need to work on the vocabulary. Sufferers? Really?
The actual quote is:
"The analysis showed that in 1971-2, 50% of people diagnosed with cancer died within a year. Now 50% survive for at least a decade - up from 24% in 1971-2.
But the findings, based on the outcomes for more than 7 million patients, also showed that for some cancers, survival rates were still very low.
For example, just 1% of pancreatic cancer patients and 5% of lung cancer patients can expect to survive for 10 years."
So there is good news and bad news mixed together. But it does show a huge improvement in cancer treatment and research.
The goal is to have it increase to 75% survival rate for ten years. Its not just treatment and research but also screening and earlier diagnosis which have come in to play.
So progress is good. It shows we how far we have come. But we also need to work on the vocabulary. Sufferers? Really?
Are we all braced????
It starts tomorrow. That ugly pink month. Go celebrate Columbus Day, Halloween, apple picking, leaf peeping and other seasonal activities. Go help organizations with their fundraising activities that do not require pink feather boas.
For myself this month I am doing the following:
Thank you.
For myself this month I am doing the following:
- Arranging a luncheon for a non profit that I volunteer with.
- Awaiting a back procedure which should relieve a lot of my current pain at the end of the month.
- Enjoying a family reunion on the coast of the Pacific Northwest - some place I have never been and always wanted to go. (We always have a house/cat sitter while we are gone so burglars, don't even think about it.)
- Wearing more pink clothing than I usually do. I like the color pink and have many pink pieces of clothing.
- Participate in any pinkified event
- Purchase any non-essential pinkified item.
Thank you.
A day off from blogging
I missed blogging yesterday. I meant to blog but time got away from me. My brother and his four children (ages 8, 11, 14, and 16) are visiting. This means chaos. The poor cat had to recover from over affection from children.
They are a lot of fun but some how take a lot of time. Breakfast seemed to last for a few hours as people wandered through and ate and left, came back for seconds, etc. Very different from the quiet mornings with just the two of us.
After my nephew learned how to make lasagna yesterday morning, my sister came over and the volume increased. Then all of us went for a walk in the woods on very icy trails. I thought I would be fine but I was exhausted.
Eventually they all left and went to Boston. I was physically exhausted. My RA feet hurt. My fibromyalgia body hurt. I needed a pain pill and a nap.My husband and I took naps. The cat continued his nap.
Then we went to my parents for a late Christmas dinner. I lasted about another 3 hours before I had to come home and become horizontal and sleep. I lead such an exciting life.
Today, my husband went to work (traitor) and left me home to deal with all the chaos. I have to take the remaining car to the garage for the day so I will be carless. This might even force me to take it easier than yesterday. But I will be at the mercy of family members to retrieve the car at the end of the day.
I can tell you I am physically exhausted still. Crap. This is no fun. But I do get to see everyone.
They are a lot of fun but some how take a lot of time. Breakfast seemed to last for a few hours as people wandered through and ate and left, came back for seconds, etc. Very different from the quiet mornings with just the two of us.
After my nephew learned how to make lasagna yesterday morning, my sister came over and the volume increased. Then all of us went for a walk in the woods on very icy trails. I thought I would be fine but I was exhausted.
Eventually they all left and went to Boston. I was physically exhausted. My RA feet hurt. My fibromyalgia body hurt. I needed a pain pill and a nap.My husband and I took naps. The cat continued his nap.
Then we went to my parents for a late Christmas dinner. I lasted about another 3 hours before I had to come home and become horizontal and sleep. I lead such an exciting life.
Today, my husband went to work (traitor) and left me home to deal with all the chaos. I have to take the remaining car to the garage for the day so I will be carless. This might even force me to take it easier than yesterday. But I will be at the mercy of family members to retrieve the car at the end of the day.
I can tell you I am physically exhausted still. Crap. This is no fun. But I do get to see everyone.
Dieting and such
Here's a theory: skip focusing on which diet is best and start focusing on changing eating habits.
This translates to stop focusing on what we eat and getting the balanced diet and change to focus on how we can get people to make healthier food decisions. Are we eating because we are stressed? Do we have bad habits related to the drive through where we make a quick stop on the way home and eat the food in the car?
Researchers look at all sorts of diets - Paleo, Atkins, Weight Watchers - and compare them all. The FDA issues the nutrition pyramid which is now a plate. But does anyone stop and look at the eating habits we have developed and why we have them?
We live in a world full of light this and fat free that and a widening population. Why?
I used to work with a woman who was a fairly healthy eater at work. She did not snack, she didn't go out for donuts. But she was quite large. I never really figured out why.
Then I went on a business trip with her and she insisted we stop at the grocery store on the way to the hotel so she could get some stuff for her room. I was happy to go and get some seltzer (my secret addiction). She bought a couple boxes of crackers and cookies - for a three day business conference. I think she went out and made another grocery run later on. I think she was an evening snacker - hence her hefty weight.
So why does a normal, bright, well educated person, sit and eat for hours at night by themselves? That is the question to answer.
If you watch the greater loser shows, people talk about their bad eating habits and are taught how to eat healthy - no soda, no drive through, healthy snacking. They also get exercise and lose weight. But they change their eating habits. Maybe they eat more salads and fewer french fries but often these shows are accompanied by tears and emotional breakthroughs as well.
I know my weight stems from three issues I have.
Maybe that's what researchers need to figure out so other people can more easily lose weight.
This translates to stop focusing on what we eat and getting the balanced diet and change to focus on how we can get people to make healthier food decisions. Are we eating because we are stressed? Do we have bad habits related to the drive through where we make a quick stop on the way home and eat the food in the car?
Researchers look at all sorts of diets - Paleo, Atkins, Weight Watchers - and compare them all. The FDA issues the nutrition pyramid which is now a plate. But does anyone stop and look at the eating habits we have developed and why we have them?
We live in a world full of light this and fat free that and a widening population. Why?
I used to work with a woman who was a fairly healthy eater at work. She did not snack, she didn't go out for donuts. But she was quite large. I never really figured out why.
Then I went on a business trip with her and she insisted we stop at the grocery store on the way to the hotel so she could get some stuff for her room. I was happy to go and get some seltzer (my secret addiction). She bought a couple boxes of crackers and cookies - for a three day business conference. I think she went out and made another grocery run later on. I think she was an evening snacker - hence her hefty weight.
So why does a normal, bright, well educated person, sit and eat for hours at night by themselves? That is the question to answer.
If you watch the greater loser shows, people talk about their bad eating habits and are taught how to eat healthy - no soda, no drive through, healthy snacking. They also get exercise and lose weight. But they change their eating habits. Maybe they eat more salads and fewer french fries but often these shows are accompanied by tears and emotional breakthroughs as well.
I know my weight stems from three issues I have.
- At my job, there are more snacks than any place I have ever worked and the kitchen is right next to my office.
- I snack after dinner which I shouldn't do. (Why did I eat that granola bar after dinner last night? I didn't have dessert is my justification and I wanted something crunchy. But I didn't need it.)
- Sometimes I eat when I am not hungry because I am bored, stressed or in pain.
Maybe that's what researchers need to figure out so other people can more easily lose weight.
Doctor's Orders
Do you heed your doctor's orders? (Do you floss more because your dentist asks?) Two-thirds of Americans do not take their prescriptions medications as prescribed. That would mean that most of us are screw ups.
Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm not sure why.
The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.
I do my best to take my medications as requested by doctors. They make it damn complicated.
This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.
Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.
Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm not sure why.
The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.
I do my best to take my medications as requested by doctors. They make it damn complicated.
This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.
Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.
Waiting for the end of Pinktober
At the beginning and end of September I asked all to take a pledge to avoid pinkification and wasting money on pink things that do not help cancer research. It is still not too late to take the pledge for 2013.
I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services.
I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.
I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.
Thank you.
Today is the second to last day of Pinktober, formerly known as October. Did you research causes to ensure they were legitimate? Did you arbitrarily purchase pink items?
Its not too late. You have 36 hours or so to still make a difference without being pink. If you did help in pinkification, now is your chance to take a step back and reevaluate what you did so you will not repeat again next year.
You may think I am being redundant here but I do feel strongly about this. Ridiculous amounts of money are spent on cancer awareness causes, of which Pinktober contains the worst, that are unnecessary.
What is necessary is money for cancer research. I do not think anyone ever the age of 10 living in US, Canada, and Northern Europe who is not aware of cancer these days. We have all 'been there, got the t-shirt'. And cancer still has no cure, along with many other diseases such as Rheumatoid Arthritis, Cystic Fibrosis, diabetes, and more.
Skip the awareness, skip the t-shirt, and help with research.
Please take a moment to reflect on your contributions to pinkification this year and see how you could change your efforts next year to help with research instead of another t-shirt.
I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services.
I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.
I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.
Thank you.
Today is the second to last day of Pinktober, formerly known as October. Did you research causes to ensure they were legitimate? Did you arbitrarily purchase pink items?
Its not too late. You have 36 hours or so to still make a difference without being pink. If you did help in pinkification, now is your chance to take a step back and reevaluate what you did so you will not repeat again next year.
You may think I am being redundant here but I do feel strongly about this. Ridiculous amounts of money are spent on cancer awareness causes, of which Pinktober contains the worst, that are unnecessary.
What is necessary is money for cancer research. I do not think anyone ever the age of 10 living in US, Canada, and Northern Europe who is not aware of cancer these days. We have all 'been there, got the t-shirt'. And cancer still has no cure, along with many other diseases such as Rheumatoid Arthritis, Cystic Fibrosis, diabetes, and more.
Skip the awareness, skip the t-shirt, and help with research.
Please take a moment to reflect on your contributions to pinkification this year and see how you could change your efforts next year to help with research instead of another t-shirt.
Predicting breast cancer recurrence five to fifteen years out
When I was diagnosed with breast cancer seven years ago, I heard about the Oncotype Dx test, for which I was not eligible (for some stupid reason I can't remember) that would help decide whether chemotherapy was necessary. It has now been available for ten years and has been shown that it can help predict late recurrence of breast cancer - which is defined as five to fifteen years out from the initial diagnosis.
I think this is real progress in reining in cancer. [I wasn't going to use the word battle or war or anything like that. I had to think and settled on reining in.] This ties in with extending the use of tamoxifen for ten years to obtain better results.
"As recognized by ASCO's guideline update, recent studies have shown that extending tamoxifen treatment for 10 years is associated with better outcomes, however, we still need better tools to identify who those patients are," said Norman Wolmark, M.D., chairman of the National Surgical Adjuvant Breast and Bowel Project (NSABP). "This study confirms that Oncotype DX can help better define who is at greatest risk for late recurrences and the potential to benefit from extended tamoxifen, as well as those who are at lower risk and will likely have less absolute benefit from extended tamoxifen and, thus, could be spared prolonged exposure and risk of long-term side effects."
Now of course, I am still do not have the criteria to belong to that group that was in the study but it is nice to know that there is progress in knowing about who is more likely to have recurrence. This in turns allow them to be better followed to catch any recurrence early.
I think this is real progress in reining in cancer. [I wasn't going to use the word battle or war or anything like that. I had to think and settled on reining in.] This ties in with extending the use of tamoxifen for ten years to obtain better results.
"As recognized by ASCO's guideline update, recent studies have shown that extending tamoxifen treatment for 10 years is associated with better outcomes, however, we still need better tools to identify who those patients are," said Norman Wolmark, M.D., chairman of the National Surgical Adjuvant Breast and Bowel Project (NSABP). "This study confirms that Oncotype DX can help better define who is at greatest risk for late recurrences and the potential to benefit from extended tamoxifen, as well as those who are at lower risk and will likely have less absolute benefit from extended tamoxifen and, thus, could be spared prolonged exposure and risk of long-term side effects."
Now of course, I am still do not have the criteria to belong to that group that was in the study but it is nice to know that there is progress in knowing about who is more likely to have recurrence. This in turns allow them to be better followed to catch any recurrence early.
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.
And how was your weekend?
Sometimes I don't blog about breast cancer but just about life. This is one of those times. My husband and I are convinced that the planets are in retrograde or something or there is a cloud of doom over our heads.
Saturday we went to the beach with my sister, brother in law, brother, niece and nephew. We had a nice big cooler with wheels that my nephew and brother were dragging down the beach. It was packed to the brim with water bottles, cans of seltzer and ginger ale, cut up fruit, ice, and Italian ices in individual cups. At one point my brother picked up the cooler and carried it on his shoulder over the soft sand. He went to put it down and..... dropped it right in front of the life guard chair.
We scrambled and put everything back in. So now there was ample sand included all over everything. We enjoyed the beach, consumed much of the cooler contents, headed out to dinner and then home. The cooler went into the kitchen where I started cleaning the sand off everything. Then I found that one of the Italian ices, a blue one to be precise, had melted and leaked 3/4s of its contents all over the inside of the cooler. So now everything was covered with blue, sticky, sugary, sandy water.
I took everything out of the cooler and I went to dump the cooler in the driveway and spray it out with the hose next to the front door. My husband, unbeknownst to me, had started the sprinkler on the front lawn and I couldn't get outside without getting soaked. I turned around and headed to the bathtub.
And dropped the open cooler in the front hall with its blue, sticky, sugary, sandy water all soaked into the 100% wool carpet runner. It was sloshing around.
I grabbed towels and started cleaning. My husband came down and helped. The carpet and the sandy, sticky, sugary, blue inside cooler went out on the porch for the night. I put it on the top of the car in the sun and sprayed it with water yesterday so I hope it doesn't become an ant magnet with the blue sugary, sticky water. It is continues to dry in the basement. That was plenty to clean up and still more to do.
Then this morning...
I was sitting on the bed next to my husband drinking coffee, reading email, and dropped my coffee cup in my lap on the bed. My laptop was splashed. My lap was soaked. The sheets and bedding are off the bed and going in the wash. I hopped in the shower and removed the coffee from the lower half of my body. But I have a couple more loads of laundry to do today. And only enough detergent for one more load.
How was your weekend? I hope it did not leave a debris field like this resulting in lots of laundry.
Saturday we went to the beach with my sister, brother in law, brother, niece and nephew. We had a nice big cooler with wheels that my nephew and brother were dragging down the beach. It was packed to the brim with water bottles, cans of seltzer and ginger ale, cut up fruit, ice, and Italian ices in individual cups. At one point my brother picked up the cooler and carried it on his shoulder over the soft sand. He went to put it down and..... dropped it right in front of the life guard chair.
We scrambled and put everything back in. So now there was ample sand included all over everything. We enjoyed the beach, consumed much of the cooler contents, headed out to dinner and then home. The cooler went into the kitchen where I started cleaning the sand off everything. Then I found that one of the Italian ices, a blue one to be precise, had melted and leaked 3/4s of its contents all over the inside of the cooler. So now everything was covered with blue, sticky, sugary, sandy water.
I took everything out of the cooler and I went to dump the cooler in the driveway and spray it out with the hose next to the front door. My husband, unbeknownst to me, had started the sprinkler on the front lawn and I couldn't get outside without getting soaked. I turned around and headed to the bathtub.
And dropped the open cooler in the front hall with its blue, sticky, sugary, sandy water all soaked into the 100% wool carpet runner. It was sloshing around.
I grabbed towels and started cleaning. My husband came down and helped. The carpet and the sandy, sticky, sugary, blue inside cooler went out on the porch for the night. I put it on the top of the car in the sun and sprayed it with water yesterday so I hope it doesn't become an ant magnet with the blue sugary, sticky water. It is continues to dry in the basement. That was plenty to clean up and still more to do.
Then this morning...
I was sitting on the bed next to my husband drinking coffee, reading email, and dropped my coffee cup in my lap on the bed. My laptop was splashed. My lap was soaked. The sheets and bedding are off the bed and going in the wash. I hopped in the shower and removed the coffee from the lower half of my body. But I have a couple more loads of laundry to do today. And only enough detergent for one more load.
How was your weekend? I hope it did not leave a debris field like this resulting in lots of laundry.
Ethical dilemma on a cancer drug
I have been mulling this over for a few days. A woman in Texas, Andrea, with stage IV ovarian cancer wants BioMarin to allow her to receive a new drug BMN 673 which has not yet been approved for treatment. Her doctor thinks it might help her. She hopes it will help her. She understands that it may not help her but it has helped others. There is a big debate going on.
I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.
This is a real ethical dilemma and I hope for the best.
What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.
I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.
I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.
This is a real ethical dilemma and I hope for the best.
What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.
I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.
Not a practical option
Earlier this week, or maybe it was last week, I saw several articles on this new intraoperative radiation for breast cancer. This is when a radioactive probe is inserted into the breast during surgery and allows the patient to skip traditional radiation. Of course, they may still need chemotherapy and other treatments.
The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.
The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:
"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.
The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."
"...The initial price of the treatment is expensive, with each probe costing £500,000.
The procedure is performed during surgery.
Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."
That is when I fell off my chair. Am I understanding this correctly? Each probe costs £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.
If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.
The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.
The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:
"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.
The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."
"...The initial price of the treatment is expensive, with each probe costing £500,000.
The procedure is performed during surgery.
Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."
That is when I fell off my chair. Am I understanding this correctly? Each probe costs £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.
If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.
look what we did!
Remember my secret happy project?
We did it! We yarn-bombed a corner of my neighbourhood. We were 10 knitters, 14 installers and one videographer. It was so much work but so much fun. I dare you to watch this short video without smiling:
(video: Mark Blevis)
There are lots more photos up at our web site, Frivolknitty.com. It was so much fun - we're already planning for the next time!
An observer pointed out that three of the knitters/installers involved in this project have lived with breast cancer. I don't think it's coincidence that we all wanted to share in a little frivolity.
We did it! We yarn-bombed a corner of my neighbourhood. We were 10 knitters, 14 installers and one videographer. It was so much work but so much fun. I dare you to watch this short video without smiling:
(video: Mark Blevis)
There are lots more photos up at our web site, Frivolknitty.com. It was so much fun - we're already planning for the next time!
An observer pointed out that three of the knitters/installers involved in this project have lived with breast cancer. I don't think it's coincidence that we all wanted to share in a little frivolity.
salty
Whenever I have bloodwork done before chemo, the nurse will flush out my port with saline. I always get a salty taste in my mouth and in the back of my throat.
Lately, I have been getting that taste when I am out walking my dogs in the city. I have a lot of winters under my belt but this is the first time I have noticed this. I don't know whether there is more salt on the streets this year or if more of it is being churned up by the extra traffic (there certainly more, along with more pollution from exhaust since the bus trike started five weeks ago). It freaks me out a little.
A couple of week ends ago, I woke up to find out that the power was out in half the house. The living room had no power, the dining room was fine. Our bedroom had no power. The other upstairs rooms were OK. The furnace worked (thank goodness) but the hot water heater did not. The fridge was working fine but the microwave was not. The strangest part was that half the stove was working (three of the elements and the oven were working. The display panel and a fourth element were not) The breadmaker, which was plugged into the stove, was chugging away.
We dithered a bit about what to do until I insisted that we call an electrician (it was a Saturday morning). Three hundred dollars later, he told us that the problem was around a little box outside the house (I believe it's called a "crimp"). If the issue was on one side of the box, Hydro (the electric company) would have to fix it, if it was on the either side than it would be "very, very expensive."
So, after torturing ourselves with some worse-case scenarios, we called Hydro.
Then the power came back on.
Hydro came a couple of hours later and narrowed down the likely problem to some wires that had been corroded by salt (I should point out that we live on the corner of a very busy thoroughfare). They fixed the wires closest to the house but were called away before they could fix the ones by the box on the street (don't you all love my technical expertise in these matters?) they were called to a fire.
The power went off again a couple of hours later.
I called Hydro again but since we still had heat, we weren't at the top of their emergency list.
Hydro came back the next morning, by which time the power was on again.
The guys (the same ones as the day before) fixed the street end of the wires and we have not had a problem since.
And yes, T., we should have called Hydro in the first place.
It's made me wonder, though, about all the salt we must be breathing in (along with all the other pollutants from cars and other things). It can't be good for you.
I'd ask Mr. Internet but I'm too scared.
And it occurs to me that I didn't even think about pollution (let alone salt) when we bought the house more than 10 years ago.
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