Just about a month ago, I marked an important day. It was my I Am Five Years Post Chemo-versary. It was a big deal on March 20th and it's still a big deal. It's just not a big ENOUGH deal.
On March 28th, there was a meeting in San Diego. It was the 243rd meeting of the American Chemical Society. I'm going to go out on a limb here. I doubt this is an annual meeting. While Columbus may have set foot on these shores in 1492, we weren't on our own until 1776. That's less than 243 years ago. Ya get my line of thinking?
Here's my REAL line of thinking. In this meeting, research was presented and it was all about a new blood test that is twice as sensitive as present tests at picking up on tumor markers. According to the presentation and without getting all technical, this new test which is not yet available to the general population, can detect changes indicative of a recurrence up to one year sooner than the current blood tests. In other words, earlier detection. Not early detection. Earlier. And earlier is definitely better. Most of the time. Unless it's not.
The American Board of Internal Medicine has just launched a new website: ChoosingWisely.org. One of the purposes of the website is to identify certain tests and procedures that may be deemed unnecessary. Thus far, nine different medical subspecialties have weighed in with recommendations specific to their areas of medicine. Of particular interest to me? The recommendations of ASCO, The American Society of Clinical Oncology.
When I was having my No More Chemo party, I remember asking my oncologist, with some (okay, TREMENDOUS) trepidation, "What's the exit plan?" As was and still is the norm, my doctor and I have a wonderful rapport and an all over the place type of communication that works for both of us. We can both be asking questions at the same time, he can be answering one question while I'm three questions ahead, we can finish each other's thoughts (sometimes). I still remember that visit. The visit that would have taken place precisely five years ago. The visit, that upon exiting his office, would thrust me into the next leg of the cancer journey....... the portion that I have come to refer to as "Flying Without A Net."
I remember saying, "I have no more breast tissue, so there are no more mammograms. How do we make sure I am okay?" And then I remember his very philosophical reply, "AnneMarie, you are too good a person. Nothing is going to happen to you." Thanks, doc, but I was really hoping for something a tad more scientific, something concrete, something to enable me to put my head on the pillow at night. In our typical method of communication, he did answer me. "IF something happens, it's not going to be a good situation." I knew what he meant. If something happened (happens), it will not be a local recurrence. I will go straight to the head of the cancer line. Stage 4. Distant mets. Terminal.
And then he explained how this would work. "We will do bloodwork to make sure the protein markers are not elevated." Last month, when I was at a seminar, those tests were discussed and new recommendations were being made. The doctors were being told these tests cause too much stress. Included in those "tests" is the blood test that is the sole method by which I am presently monitored. Pause. Repeat for full effect. The SOLE METHOD of monitoring available to me, a cancer patient. And Choosing Wisely, the ASCO portion of the program, says this test is not a wise choice.
Their reasons are valid. I think I read somewhere that even if the number is elevated, there is no scientific evidence that early detection via elevated tumor markers will change the outcome. The "outcome" happens to be My Life, just saying' AND according to the first gang of scientists, five years isn't the magic number anyway. In their abstract, it is noted that one in five breast cancer "survivors" will have a recurrence within TEN years of completion of treatment.
My scheduled oncology follow up is next week. It's on the exact date that I received The Letter from the radiologist wherein he noted "a density was seen which could simply represent a cyst." It was, in fact, invasive lobular breast cancer although it would be three full months before that cyst was identified as cancer.
I'm five years out. Only halfway to the real magic number if that other report holds any weight whatsoever. And, a few hundred thousand doctors have collaborated about this blood test.... the only follow up available to the breastless, and they say it's pretty much useless.
I'm officially in pre-doctor visit anxiety mode. Not only do I have the usual angst, now I have a million more questions. Maybe it's time to stop reading all the research. Maybe this empowered patient thing isn't all it's cracked up to be. Maybe my dad was right when he told me I was supposed to be ignorant and happy. I think the next couple of weeks are going to feel like years. I think the tequila bottle is going to be in a readily available spot in my freezer. Better off keeping it cold so I can simply throw a straw in the bottle. Rx Sip as needed until anxiety is controlled or until unconscious.
Tuesday, April 17, 2012
Monday, April 16, 2012
THE SKINNY ON SOY
I can't take any credit for the content in today's blog. What follows is information directly from the Dr. Susan Love Research Foundation. It seems we are in a never ending maze of What's Great Today.....Not So Much Tomorrow.
Soy is a Hot Topic in the breast cancer arena. I know I was told to limit my soy intake and that my "high risk" daughter (who has a bag of soy crisps in her hand every time I turn around) was given the same advice. We need someone to decipher the headlines and the sound bites. Thankfully, I can always count on Dr. Love to sort through the information and explain it in ways that are easily understood.
Take it away, Dr. Love........
The story of soy and breast cancer is an excellent example of the research process. Pieces of information come in slowly, some studies contradict others, and then, overtime, as we learn more, we gain a clearer picture of the answer. But until that occurs, confusion and worry are common, as the subject in question—in this case soy—pops back and forth between the "good" category and the "bad."
Initially, soy was thought of as a wonder food. This happened because researchers looking for an explanation as to why women living in Asia had lower breast cancer rates than women living in the U.S. found that Asian women ate more soy products. Virtually overnight, soy became the best thing in breast cancer prevention. Tofu and soy milk were all the rage. All kinds of processed foods began to contain soy, and soy powders and supplements could be found everywhere. There was no question: Soy was GOOD!
But as scientists began to conduct laboratory studies to look for reasons why soy might decrease breast cancer risk, they found that when genistein, which is a type of isoflavone, was added to breast cancer cells they grew faster. Soon after, it was suggested that women who were taking tamoxifen and other anti-estrogens should avoid soy because soy acted like a weak estrogen, and could potentially counteract the tamoxifen or increase a woman's risk of recurrence. Suddenly, soy was now BAD!
That's why it was big news when a study conducted in Shanghai, China, published in December 2009 in the Journal of the American Medical Association found that women with breast cancer who ate soy had a decreased risk of having a cancer recurrence or dying of the disease.
The study was based on data from the Shanghai Breast Cancer Survival Study, which includes 5024 female breast cancer survivors. After following the women for four years, the researchers found that the higher a woman's soy protein or soy isoflavone intake, the lower her risk of having a breast cancer recurrence or dying from the disease. This was true regardless of whether women had ER-positive or ER-negative tumors, whether or not they were taking tamoxifen, and whether they were pre- or postmenopausal. (Although the researchers didn't look at this question, the findings would be expected to be the same for women on aromatase inhibitors.)
The study's authors pointed out that there are differences in the types of soy eaten by women in Asia and women in the U.S. In Asia, women are more likely to eat whole soy foods, like cooked soybeans, edamame, tofu, miso, and soy milk, whereas in the U.S. women tend to eat more processed foods that contain soy—and at much lower levels.
This is additional evidence that women in the U.S. with breast cancer can feel even better about adding whole soy foods to their diet. To be sure, we need more studies in women to confirm this finding. But a study of this size that has been so well done and that shows no negative effects clearly suggests that eating soy will not increase your risk of a recurrence and that, in fact, it might even reduce it!
What about soy letcithin? It is extracted from soybeans, but it is not part of the soy protein. As a result, it does not contain any isoflavones, which are the part of the soybean that acts as an estrogen. It is primarily used as an emulsifier to hold ingredients together. So, there is also no reason to worry that you are getting lots of isoflavones in your diet each time you chew gum or take a supplement.
The soy story also shows us why we can't over simplify the science. Soy is not a phytoestrogen but rather a "phytoSERM," more like tamoxifen than estrogen. It also reinforces that we cannot automatically extrapolate from studies on cells and rats to women. We need to do studies on women so that we know what happens in women's bodies.
Initially, soy was thought of as a wonder food. This happened because researchers looking for an explanation as to why women living in Asia had lower breast cancer rates than women living in the U.S. found that Asian women ate more soy products. Virtually overnight, soy became the best thing in breast cancer prevention. Tofu and soy milk were all the rage. All kinds of processed foods began to contain soy, and soy powders and supplements could be found everywhere. There was no question: Soy was GOOD!
But as scientists began to conduct laboratory studies to look for reasons why soy might decrease breast cancer risk, they found that when genistein, which is a type of isoflavone, was added to breast cancer cells they grew faster. Soon after, it was suggested that women who were taking tamoxifen and other anti-estrogens should avoid soy because soy acted like a weak estrogen, and could potentially counteract the tamoxifen or increase a woman's risk of recurrence. Suddenly, soy was now BAD!
That's why it was big news when a study conducted in Shanghai, China, published in December 2009 in the Journal of the American Medical Association found that women with breast cancer who ate soy had a decreased risk of having a cancer recurrence or dying of the disease.
The study was based on data from the Shanghai Breast Cancer Survival Study, which includes 5024 female breast cancer survivors. After following the women for four years, the researchers found that the higher a woman's soy protein or soy isoflavone intake, the lower her risk of having a breast cancer recurrence or dying from the disease. This was true regardless of whether women had ER-positive or ER-negative tumors, whether or not they were taking tamoxifen, and whether they were pre- or postmenopausal. (Although the researchers didn't look at this question, the findings would be expected to be the same for women on aromatase inhibitors.)
The study's authors pointed out that there are differences in the types of soy eaten by women in Asia and women in the U.S. In Asia, women are more likely to eat whole soy foods, like cooked soybeans, edamame, tofu, miso, and soy milk, whereas in the U.S. women tend to eat more processed foods that contain soy—and at much lower levels.
This is additional evidence that women in the U.S. with breast cancer can feel even better about adding whole soy foods to their diet. To be sure, we need more studies in women to confirm this finding. But a study of this size that has been so well done and that shows no negative effects clearly suggests that eating soy will not increase your risk of a recurrence and that, in fact, it might even reduce it!
What about soy letcithin? It is extracted from soybeans, but it is not part of the soy protein. As a result, it does not contain any isoflavones, which are the part of the soybean that acts as an estrogen. It is primarily used as an emulsifier to hold ingredients together. So, there is also no reason to worry that you are getting lots of isoflavones in your diet each time you chew gum or take a supplement.
The soy story also shows us why we can't over simplify the science. Soy is not a phytoestrogen but rather a "phytoSERM," more like tamoxifen than estrogen. It also reinforces that we cannot automatically extrapolate from studies on cells and rats to women. We need to do studies on women so that we know what happens in women's bodies.
This post is courtesy of the Dr. Susan Love Research Foundation, dedicated to eradicating breast cancer and improving the quality of women's health through innovative research, education and advocacy. To support this important cause and donate, visit www.dslrf.org.
In keeping with staying on top of some of the most pertinent issues, Army of Women is helping to fill this study specifically related to soy and how it may affect breast density (another hot news topic). If you fit or might know someone, please consider joining the study!
Dear AnneMarie,Studies have shown that eating soy in the diet reduces breast cancer risk but we don't know why. This study is looking into whether it does this by decreasing breast density. A research team at the University of Southern California is looking for women with a family history of breast cancer AND breast cancer survivors to participate in a study to see if taking a soy supplement (in tablet form) for one year can reduce breast density or slow or reduce cell growth in the breast. Study participants cannot be currently receiving cancer treatment.Please read on to learn more about what's involved and who can participate. If this study isn't right for you, please pass it on! Help us reach as many eligible women as possible! | |
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Friday, April 13, 2012
VOTING TIME
Today, I am "rounding" on the floor at Memorial Sloan Kettering. I felt I needed to give back to the hospital... really, it's so much more than a hospital.... it's an entire community..... that took such great care of me since April of 2006 when I first hobbled through the doors with my films in hand, on crutches. It was an odd twist of fate. I had elective surgery on my foot to have a neuroma removed. The surgery was in the same hospital where I sat with my son last week.
My foot surgery was scheduled weeks before I descended into imaging hell. I spent an entire week in hell. I was gearing up for my foot surgery. What cold possibly be of more importance than fixing this issue with my foot? After all, it was messing up my ability to wear really, really, REALLY great shoes. How could I POSSIBLY know that there would be A Letter in my future when I was setting up this surgery? A Letter that began the domino effect so eloquently penned by Nancy in her blog at Nancy's Point.....
I'm sure I still have it in my "This Sucked" folder. Come back for additional images of two areas of concern: The Density (not really an area of concern but just happens to be what WAS cancer) and The Calcifications (which really were an area of concern that appeared highly suspicious and ultimately, WERE nothing). The lesson? Don't count on anything until all the votes are in.
And right now, we need to be voting. There are a bunch of things going and I would like to ask everyone to take a couple of moments to save these links and VOTE.
First.... METAvivor. Pink Well is presenting a sizable donation to the organization with the most votes. No area of breast cancer is in more need of funding than research of metastatic disease.
Second.... the "Webby" awards. Is it me or are there more awards out there than anyone can possibly keep up with.... No matter. I feel strongly about a couple of the award categories so I'm asking for your help. To begin, the gang at I Had Cancer is nominated in two categories. Please vote in both. They are nominated for Social Media Website and Community Website. Click both links. Vote for them in both categories.
Also nominated for a "Webby" is Memorial Sloan Kettering. The press release from the hospital says it all. Their nomination is in the Health Website category and is the result of lots of hard work over the past several months by the team at the hospital to redesign the website. I hope their efforts will be rewarded. Poke around the website. Take it for a test drive. And then, submit a vote on their behalf. Please. Pretty please.... sugar on top??
The voting continues for another two weeks. It will give me something to keep my mind occupied. April is filled with Those Dates. April is also my oncology follow up. April was not my favorite month. If I see things happen for METAvivor, I Had Cancer and Memorial Sloan Kettering, I may just change my mind about April. It's in your hands.
My foot surgery was scheduled weeks before I descended into imaging hell. I spent an entire week in hell. I was gearing up for my foot surgery. What cold possibly be of more importance than fixing this issue with my foot? After all, it was messing up my ability to wear really, really, REALLY great shoes. How could I POSSIBLY know that there would be A Letter in my future when I was setting up this surgery? A Letter that began the domino effect so eloquently penned by Nancy in her blog at Nancy's Point.....
I'm sure I still have it in my "This Sucked" folder. Come back for additional images of two areas of concern: The Density (not really an area of concern but just happens to be what WAS cancer) and The Calcifications (which really were an area of concern that appeared highly suspicious and ultimately, WERE nothing). The lesson? Don't count on anything until all the votes are in.
And right now, we need to be voting. There are a bunch of things going and I would like to ask everyone to take a couple of moments to save these links and VOTE.
First.... METAvivor. Pink Well is presenting a sizable donation to the organization with the most votes. No area of breast cancer is in more need of funding than research of metastatic disease.
Second.... the "Webby" awards. Is it me or are there more awards out there than anyone can possibly keep up with.... No matter. I feel strongly about a couple of the award categories so I'm asking for your help. To begin, the gang at I Had Cancer is nominated in two categories. Please vote in both. They are nominated for Social Media Website and Community Website. Click both links. Vote for them in both categories.
Also nominated for a "Webby" is Memorial Sloan Kettering. The press release from the hospital says it all. Their nomination is in the Health Website category and is the result of lots of hard work over the past several months by the team at the hospital to redesign the website. I hope their efforts will be rewarded. Poke around the website. Take it for a test drive. And then, submit a vote on their behalf. Please. Pretty please.... sugar on top??
The voting continues for another two weeks. It will give me something to keep my mind occupied. April is filled with Those Dates. April is also my oncology follow up. April was not my favorite month. If I see things happen for METAvivor, I Had Cancer and Memorial Sloan Kettering, I may just change my mind about April. It's in your hands.
Thursday, April 12, 2012
SIDETRACKED SLACKER DROP-OUT
I had EVERY intention of sticking with the WEGO Health Challenge. I received the list of daily "prompts" to write 30 posts in 30 days. I "signed up" early enough to get a list of ten bonus prompts in case one of the assignments was too far out of my creativity zone.
Also, be sure to tell your family and friends what is going on with you. They will be relieved and will worry less.
I'm starting to feel a bit like I'm working my way toward "the dog ate my homework." Except I don't have a dog. I do have two kids. Both of whom have been out of the house for a long time. For the past ten days, both of them are back. When you are accustomed to being alone and two kids (two adult kids) are back in the house, everything goes haywire.
Hell. The one thing you DO NOT EVER DO to a ChemoBrain person is mess with their rhythm and their routine. Really, I have no routine, no rhythm and mostly, I forget more than I actually get done. What little I did "have" is out the window...... I expect things will be returning to some sort of normal by the weekend. But..... The Writing Challenge. No WAY. I can't write PERIOD. Forget following some rather ingenious prompts. I'm keeping the list. Some of them will be fun. When my head is clear.
Did you miss me yesterday? Why was there no blog?? I was out a tad later than expected on Tuesday evening. I left the "kids" and went to meet someone for dinner. I left at 4PM expecting to be home no later than 9 or 10. My driving privileges have been suspended by my son who informed me earlier, "We need to have a serious conversation about your driving." Deadpan. I thought he was going to accuse me of driving under the influence. I didn't, but I did have a couple of glasses of wine and there was no dinner. The bar was too nice. We ate bar food. And I didn't get home until much later than expected. My phone was in my bag. My bag was at my feet. At 11PM he began calling and texting and I didn't answer. I didn't hear the phone, didn't feel the vibration.
LAST night, I got a lecture. "Ya know, mom, you didn't answer the phone, it was way late and damn it, I had to get up at 5:30. I started checking the news feeds to see if there were any car accidents. I was ready to start calling the hospitals." OK OK OK.... Wise ass son made his point. Apparently, I'm not allowed to have my car for a week. "Seriously, coming in at 1:30?? You left at 4PM!" Ummm, yeah, I'm well aware of all of this......Witty wise ass. Good thing he got the all clear surgical follow up and he will be going back to his place so he can stop worrying about me. What he doesn't see, won't worry him. Yes, the whole thing was very friggen funny.
Which brings me to something I do want to share. It is on the American Cancer Society website. It's precisely WHY I need to be alone again. With my own rhythm and routine. The article?
Chemo Brain: It is Real
Personally, I would have made chemobrain one word and "is" would have been "IS" in giant CAPITAL letters. But that's just me.
Read the article. It's very good...... My highlight reel:
Just one comment because I always have to say SOMETHING......if multi-tasking is "answering the phone while cooking" I am getting in line to collect my employee of the century award for beating myself up for over TWO YEARS as I watched work pile up, drove myself crazy to get it done and finally gave up.
FIRST, THE PROBLEMS:
Patients report the following symptoms:
- Short-term memory lapse -- forgetting things that they usually have no trouble recalling
- Trouble concentrating -- can't focus on what they're doing, have a short attention span, may "space out"
- Trouble with word-finding, such as remembering names, not completing sentences, or not being able to think of a word
- Trouble multi-tasking, like answering the phone while cooking, without losing track of one task
- Taking longer to finish things-- slower thinking and processing
NOW, SOME SUGGESTIONS:
The following are steps that some patients have found helpful in managing their day-to-day living:
- Write things down. Keep track of appointments and schedules, to-do lists, important dates, phone numbers and addresses.
- Exercise your brain. Take a class, do word puzzles, or learn to do something new.
- Exercise your body. Regular physical activity is good for your body; it improves your mood, makes you feel more alert, and helps you feel less tired.
- Get enough rest and sleep.
- Eat your veggies. Studies have shown that eating more vegetables can help you keep up your brain power.
- Set up and follow routines. Put the things you often lose in the same place each time you're done with them. Try to keep the same daily schedule.
- Give yourself permission to focus on one thing at a time.
- Choose only those activities that are important to you and allow yourself plenty of time to complete tasks.
- Consider use of relaxation techniques such as yoga or meditation.
- Track your memory problems. Keep a diary of when you notice problems and the events that are going on at the time. Medicines taken, time of day, and where you are may help you figure out what affects your memory. Don't plan important tasks or events when your memory problems are worse.
- Do not criticize yourself for not being able to remember. Accepting the problem will help you deal with it. Patients say that being able to laugh about things you can't control can help you cope. And remember, you probably notice your problems much more than others do.
THAT LAST LINE MAY OR MAY NOT HELP (Relieved? maybe... Pissed off? possibly)
MOST IMPORTANT:
You are not crazy and you are not losing your mind. Chemo brain is real.
Interestingly enough, when I wanted to blog about chemobrain and the volunteers at the writing program at MSK helped me STAY ON TASK to get the blog up and running, none of them knew what the hell I was talking about. My sweetie mentor asked me if I thought there was an audience..... Now she just shakes her head and we laugh about that first conversation. Me dreaming, Anna rolling her eyes and on Monday, at the annual reception for Visible Ink, we will laugh together as one of my sillier pieces is read by a member of the professional troupe of actors who make this event so special for all. (And yes, just a tad more special for me)
I am honored. I am humbled. Anna was humored by my silly little dream...... validate one person. Just. One. Person. Monday, that one person will be me. Sticking with the loose version of adjective alliteration to describe my feelings,
I am happy, too!
Tuesday, April 10, 2012
IN YOUR GROCER'S FREEZER, A FOLLOW UP
Yesterday, I stopped in the supermarket on my way home. As if on cue, I walked right into this sign (glance quickly and then read on):
I just love the way the cheese is made to look like a runner. And why is it presumed that we are all running in some sort of thing? When my friend (the one who died in January) was first diagnosed, we went out to dinner so she could talk and I could LISTEN. Hand hold. Maybe help her understand how to be an empowered patient. I think we were still in a semi-embrace when she asked me (only half joking), "What does this mean, am I supposed to be wearing a pink baseball cap, should I be signing up to run in races, do I really NEED to run in those races?" I don't think I will ever forget those words. I can still see the expression on her face. I can tell you exactly where we were standing as those words were spoken. She is now gone. In under two years. Those words haunt me. The ribbon and the races did nothing for her. She is one of the 40,000. And frankly, that sucks.
Today, however, the cheese was a necessity and if there were another comparable product on the shelf sans ribbon, I can assure you, this particular package of cheese would not be in my fridge. However, I needed to get some low fat cheese in the house. I was in the grocery store with a list of acceptable foods provided by the doctor (this due to my son's surgical snafu). Since the list is quite limited, I tried to purchase as many items as I could find. The kid needs a bit of variety. Seeing the package, knowing what was up on this blog..... I stood there shaking my head. I'm pretty sure anyone in the dairy aisle was looking at me ready to call those guys with the funny jackets.
Take note of the message on the back of the package: "A portion of each purchase.....will be used to support breast cancer initiatives." I don't have a crystal ball. Do you? Can you determine from that phrase what "portion" will be used? And what does the word "used" even mean. Is there a reason it doesn't say "donated?" I'd like some clarification on that phrase about supporting breast cancer initiatives.
This type of ambiguity is precisely what I was alluding to in yesterday's blog. And this is what we should be expecting to see.... at the bare minimum..... this is what that message would look like if the product was being marketed with a decent level of transparency:
Same number of words (almost), VASTLY different message and my own hypotheticals. If the wording on the package isn't in plain, transparent English, I'd suggest, unless the purchase is a necessity, don't buy it thinking you are doing something that it going to make a difference. Buy it because you need it. And because there isn't a suitable alternative. The only way this is going to change is if WE stop opening our wallets.
There is a reason for the ambiguity. You can take that to the bank. And deposit the money you saved on meaningless pink ribbon products into an account so you can send your check directly to a charity of your choice. Yes, folks, it really IS that simple. If enough of us stand shoulder to shoulder on this, we WILL make a difference and things WILL change.
I swear I'm getting off this soapbox. For the time being. However, my grocery outing was oddly coincidental, impeccably timed and is a perfect example of what I was trying to explain yesterday. In other words, there was NO WAY this wasn't getting posted.
Sometimes, a picture is worth a thousand (or three thousand) words. Questions? Concerns? I'm a moron? Comment away. I can take it..... And I can dish it out, too.
Nothing against the apple growers in NYS and the American Cancer Society is a wonderful organization, but WHY the pink ribbons. This campaign is not for breast cancer, it's for cancer in general. Pink ribbons equate to instant recognition. I am skeptical of the wording, too. HELP BEAT CANCER. The word "BEAT" may have been a very deliberate choice given the fact that the sign is pink, the ribbons are pink and every letter in the word is also in the word breast. Our eyes DO play tricks on us and I did, for a quick moment equate the apples with another breast cancer gig.
I WILL give them credit for making it clear they are donating $25,000. Lots of credit since that is very prominent in the sign. But, again, where is the money going. "Fund cancer research and programs" doesn't say much. In fact, it doesn't say anything. I don't even know how to make an inquiry. I suppose I could try the American Cancer Society.
Bottom line, this doesn't really matter to me. I wasn't in the store for apples and IF I were, I would have bought the apples without giving it a second thought. Because I needed apples, NOT because of a ribbon.
This item, however, I DID purchase:
I just love the way the cheese is made to look like a runner. And why is it presumed that we are all running in some sort of thing? When my friend (the one who died in January) was first diagnosed, we went out to dinner so she could talk and I could LISTEN. Hand hold. Maybe help her understand how to be an empowered patient. I think we were still in a semi-embrace when she asked me (only half joking), "What does this mean, am I supposed to be wearing a pink baseball cap, should I be signing up to run in races, do I really NEED to run in those races?" I don't think I will ever forget those words. I can still see the expression on her face. I can tell you exactly where we were standing as those words were spoken. She is now gone. In under two years. Those words haunt me. The ribbon and the races did nothing for her. She is one of the 40,000. And frankly, that sucks.
Today, however, the cheese was a necessity and if there were another comparable product on the shelf sans ribbon, I can assure you, this particular package of cheese would not be in my fridge. However, I needed to get some low fat cheese in the house. I was in the grocery store with a list of acceptable foods provided by the doctor (this due to my son's surgical snafu). Since the list is quite limited, I tried to purchase as many items as I could find. The kid needs a bit of variety. Seeing the package, knowing what was up on this blog..... I stood there shaking my head. I'm pretty sure anyone in the dairy aisle was looking at me ready to call those guys with the funny jackets.
Take note of the message on the back of the package: "A portion of each purchase.....will be used to support breast cancer initiatives." I don't have a crystal ball. Do you? Can you determine from that phrase what "portion" will be used? And what does the word "used" even mean. Is there a reason it doesn't say "donated?" I'd like some clarification on that phrase about supporting breast cancer initiatives.
This type of ambiguity is precisely what I was alluding to in yesterday's blog. And this is what we should be expecting to see.... at the bare minimum..... this is what that message would look like if the product was being marketed with a decent level of transparency:
"Five percent of net proceeds to a maximum of 100k will be donated to Army of Women."
Same number of words (almost), VASTLY different message and my own hypotheticals. If the wording on the package isn't in plain, transparent English, I'd suggest, unless the purchase is a necessity, don't buy it thinking you are doing something that it going to make a difference. Buy it because you need it. And because there isn't a suitable alternative. The only way this is going to change is if WE stop opening our wallets.
There is a reason for the ambiguity. You can take that to the bank. And deposit the money you saved on meaningless pink ribbon products into an account so you can send your check directly to a charity of your choice. Yes, folks, it really IS that simple. If enough of us stand shoulder to shoulder on this, we WILL make a difference and things WILL change.
I swear I'm getting off this soapbox. For the time being. However, my grocery outing was oddly coincidental, impeccably timed and is a perfect example of what I was trying to explain yesterday. In other words, there was NO WAY this wasn't getting posted.
Sometimes, a picture is worth a thousand (or three thousand) words. Questions? Concerns? I'm a moron? Comment away. I can take it..... And I can dish it out, too.
Monday, April 9, 2012
FOR THE RECORD ...... I'M **STILL** PISSED OFF .... JUST SAYIN' ----------
I selected this post to be featured on my blog’s page at Breast Cancer Blogs.
Little more than a week ago, I was privileged to attend a screening of Pink Ribbons Inc. It was my honor to speak on behalf of Breast Cancer Action. It is no surprise to anyone who reads this blog that I am not happy with the status quo. As last October approached, I was educated about Pink Ribbon Culture by some of the smartest women with whom I have ever communicated. I joined the ranks of the disillusioned.
In the movie, we learn that the pink ribbon was not the genius of Estee Lauder or Komen or Avon. It was a simple idea of a woman who was paying tribute to lost loved ones. When she refused to sell her salmon ribbon, the color was changed and that's where the story begins. The ribbon raised awareness. The ribbon educated women about the necessity of mammography and early detection. And then, the ribbon was "hijacked." I can't steal someone else's genius observation and the word "hijacked" came from a tweet by the good folks at Breast Cancer Action. Progress slowed to a snail's pace. Little has changed since we made those first great strides.
I do not hate the pink ribbon. I supported that ribbon. Blindly. I do not consider myself a stupid consumer. I know how to properly vet organizations before donating money. There is a problem with the vetting process in the pink ribbon culture. It's not all about Charity Navigator or Guidestar awarding its highest rating. Somehow, this goes much deeper. I despise the fact that I was duped. I can't blame anyone but myself. I CAN thank people like Gayle Sulik and the late Rachel Cheetham Moro for shining a light on the mess. And, I can share what I've learned.
The pink ribbon is NOT regulated. Awareness? Are we all aware, for example, that anyone can slap a pink ribbon on a product and never donate one penny to any organization? That's a fact. The ribbon is put on the packaging and in the fine print, it will say something like "supporting breast cancer awareness." Other products donate a minuscule portion of the net proceeds (literally one cent in some cases).
With plenty of other products, the donation is capped once a certain amount of money is raised. In simple chemobrain terms: Ten dollars from this widget is being sent to Breast Cancer Charity. The fine print? Maximum contribution of $100.00 will be made by Smart Corporation to Breast Cancer Charity. Thousands of widgets are produced with the pink ribbon. After the first ten are sold, SmartAss Inc keeps all of the money. No more donation to Breast Cancer Charity.
The technical name? Cause marketing. THIS PISSES ME OFF. And it PISSES ME OFF because WE should be smarter. We should be savvy consumers. Instead, we are The Brand. We are marketable commodities. We are profit margins. OUR illnesses add to someone else's bottom line.
But, many of us do not know this. I didn't. And now I do. And I open my mouth because if someone is going to slap a pink ribbon on something, we should demand full and complete transparency. The answers to three key questions should be readily available.
- How much money from this purchase is being donated to a charitable organization (and is there a cap)?
- What organization is receiving the donation?
- How does that organization spend their donor dollars? (Lumping a mess of stuff under the heading of "programs" is NOT an acceptable explanation for me, either. I want details)
On Monday, I offended someone with my words. It started with an anonymous comment: "OMG get a life lady." I thought my response was polite and honest and worded quite kindly. I don't want another 25 years to pass with the same lack of progress. Meaningful progress would be a great start. My response apparently opened the door for further commentary by a nameless person on this blog.
Admonishing me to "get a life" wasn't enough. I received a rather long response to my disappointment over the lack of meaningful progress and over my concern for my daughter. It felt rather mean-spirited and some of my blog buddies jumped to my defense. (And thank you, each and every one of you who left some words of encouragement...... ) One of them advised me to just step aside. I did. But I'm not the type to sit with my mouth shut for too long when I'm attacked personally.
The comment became personal when I read phrases directed solely at me: "take a breath," "stop the negativity," "focus on the positive," "stop being so pissed off," and best of all, "accept this as a fact of life." The words are a bit strong and clearly there is a sense of urgency, a deep need to hang on to that ribbon for dear life while 40,000 women are dying each year, every year. Their deaths, in my opinion, are the direct result of the grip on that ribbon.
I don't take direction from anyone. There isn't a soul on the planet who is going to tell me to stop doing anything. Ever. If my actions are coming from a place of truly understanding an issue and my actions are an attempt to make the slightest difference.... if my words enlighten just ONE person, that's good enough for me. In no particular order, what follows are my own opinions and feelings about some of what was expressed. The tone directed at me is quite authoritative, accusatory, demeaning and/or defensive. I hope to refrain from doing the same in expressing my feelings.
While I listen with an open mind to all opinions, I doubt the person who left the comment has ever so much as given a glance to any other points of view considering the tone and tenor of the remarks. And again, I call bullshit on the whole thing. Yes, the purpose of the pink ribbon has long been achieved. It has also alienated the breast cancer patients from the cancer community at large. Those with other types of cancer are resentful. I've heard that resentment expressed time and again in a number of different forums, across several platforms, from many different people. I listen when others speak. I empathize. And, I happen to agree with their sentiment. They are not wrong.
Why do we care if others are capitalizing on our disease? Frankly, I don't care what corporations are doing. My goal is to make noise and make sure my position is clear. I resent anyone capitalizing on ME. On my cancer diagnosis. On my altered body. On the emotional toll that accompanies a cancer diagnosis. I RESENT it. And I don't have to sit in silence. I would hope those who buy pink ribbon products would consider getting answers to those three questions I mentioned earlier.
I too have better things to worry about and bigger problems to solve. For starters, I am bothered by the billions of dollars being thrown at a situation as we continue to accept what I would call on the street, "piss poor results." It's called throwing good money after bad. Or bad money after good. Or more money for nothing. Women are dying. Personal friends. They are "the problems" that I'd like to solve. The fact that my daughter is a previvor, not because of BRCA status, but because of a strong enough "history".... another problem I'd like to solve. I'd like to see research being done to SOLVE the problem of breast cancer. To prevent the disease.
I am not interested in the opinion of anyone who is telling me I should "take a deep breath" and I "must accept that money comes from business - whether we like it or not." Survival of any business in a capitalistic society is consumer driven. WE are the consumers. Ergo, if we do not spend our money on products that are doing little or nothing to stop the breast cancer pandemic, those predator businesses can no longer profit from MY disease.
All the energy I spend fighting is bad for "our cause." This is not MY cause. My cause is research. My cause is prevention. My cause is stopping the spread of disease. My cause is understanding why 20% of early breast cancers WILL recur within the first TEN years. My cause is figuring out how to STOP that. The pink ribbon is not my cause. Negativity, yes. Resentment, absolutely. Did your mother stand beside you, crying, when you were told, "you have invasive breast cancer." ????? I don't know who felt worse. I think she did. I should just accept this? No, I will not accept any of it. I do not want to be in that situation with my own daughter.
Stop the negativity and focus on positive issues? Stop being so pissed off and accept this as a fact of life? There is nothing positive about the status of cancer research in general. It's been forty years since the "war on cancer" was declared. Damn straight I am pissed off and NO, I will not accept this as a fact of life because, quite frankly, it's bullshit. A fact of life? To refer to the pink ribbon as a fact of life is offensive on more levels than I can possibly express.
Slavery was a fact of life until people began to make noise. Women not having the right to vote was a fact of life less than one hundred years ago in this land of the free UNTIL women began to make noise. To those of us who have been burned to our core by this disease, watching loved ones die, watching the quality of the lives of others so drastically altered, having to make choices to "slash, burn and poison" which are the exact same choices we had when the Pink Ribbon came along to create such awareness, we are choosing to make noise because NO, we do not accept this as a fact of life. I can only speak for myself when I say that I will NEVER accept this as a fact of life. At least not in its present direction.
Oh, as for explaining why this is such a horrible event before I start ranting? I didn't think an explanation was necessary. The ad speaks for itself. Cause marketing to the cause marketers? How many levels of people need to make money before someone steps in and says, ENOUGH. I've had enough. My friends have had enough. MANY of us have had enough. I am not attacking an organization or a person although there are plenty from which to choose. I'm just trying to raise awareness. The right kind of awareness. And it IS just that simple.
To summarize, do not tell me to what I must and must not accept. Do not tell me to stop being pissed off. Complacency got us here. Pissed off is the way out. Do NOT imply on any level that this is "our cause" simply because I am a woman with breast cancer. I should just follow the masses like a lamb to a slaughter house. No thank you. The noise is making for Bad Press? Seriously?? The truth stands on its own merit. If that's bad press, too damn bad.
We, those of us who have looked beyond the ribbon, tried asking nicely. We tried to dispel the myths and expose the truth. Unvarnished. Uncut. Unspun. We were ignored. We are accused of being miscreants. We played nice and the other side continued to play dirty. Twist words to suit "the cause," skew statistics to bolster "the cause." Unfortunately, there would be no dialogue. Instead of working together for "the cause," we were shunned. Ironic, don't you think? I mean really, WE are The Cause. Without US, there is No Cause. And We are Shunned. Disgraceful is a more appropriate description.
I didn't start from a position of being brash and brazen. I didn't go from zero to pissed off. I sat on the sidelines. I watched from a distance. I realized things were getting worse. I saw how trying to work toward some sort of resolution like reasonable, respectful adults didn't move us one inch closer. I have tons of patience. I will try every conceivable approach when there are oppositional points of view. I do NOT have a short fuse. A simple course correction might resolve this entire dust up. First, however, both sides have to be heard.
Being ignored constantly and continuously finally got to me. And I got "pissed off." And, I will stop being "pissed off" when others simply acknowledge the mere existence of some impropriety. That would be a great place to start. That could bring some effective and meaningful change. Everyone wins. How is that so hard to understand? Boggles my mind. And, pisses me off.....
Friday, April 6, 2012
HAIKU ?? NO CLUE ....
Fair warning: I don't haiku. Do you? If you do, perhaps you should check one of the others who is participating in the WEGO writing challenge. This requires too much thought for a chemobrain. First retain a thought. Then, count syllables? Then, connect a third phrase to the already forgotten thought because I was too busy counting. It could be fun. If I had some poetic skill for starters and a working "working memory" for enders.
I will take a stab, at writing haiku for you. First, I'll start counting.
My friends are dying. I am sad, I am upset. Only one fix: research.
That pink ribbon sucks. Symbolic of no progress. Pink must fade to black.
I hate breast cancer. Especially the mets kind. Fearless friends force change.
I'd know what to do. If I only had a brain, not fried by chemo.
I love my body. My scars will not define me. They are part of me.
I'm a bitch blogger. Don't tell me I should calm down. Have balls, sign your name.
Think before you pink. Time for us to make a stink. Burn the ribbon now.
I will take a stab, at writing haiku for you. First, I'll start counting.
My friends are dying. I am sad, I am upset. Only one fix: research.
That pink ribbon sucks. Symbolic of no progress. Pink must fade to black.
I hate breast cancer. Especially the mets kind. Fearless friends force change.
I'd know what to do. If I only had a brain, not fried by chemo.
I love my body. My scars will not define me. They are part of me.
I'm a bitch blogger. Don't tell me I should calm down. Have balls, sign your name.
Think before you pink. Time for us to make a stink. Burn the ribbon now.
Thursday, April 5, 2012
THE SHOE SWITCH AKA CAREGIVING
Today's Wego Health Writer's Challenge post is making is in just under the wire. With good cause. Since Monday evening, the shoe has been on the other foot. Some of you already know my son had surgery on Tuesday.
In a complete violation of HIPAA rules and regulations, I am choosing to share. Exactly eighteen months ago, almost to the day, the shoe was on my foot. I had surgery scheduled on October 1. He came here to spend the night before. He was in charge. He was the driver, mom was shotgun. Technically, in the car, I was shotgun but I think you know what I mean. He would provide all necessary of updates to concerned family members. Mass email notifications all pre-set. He stepped up and stepped in as my caregiver for the hospital portion of the program. Mom took over when I was discharged. He was awesome. I stayed drugged. I had the easy role. Despite the pain. Definitely, the easy role.
Monday evening, my son was here again. The night before surgery. Clear liquid day as instructed for many laproscopic operations. On Monday night, his shoe was on my foot. I was in unchartered waters. For the past six years, it's been all about me. I was the one who was checking in at the surgical reception area. I was the one whose name was called to change out of my street clothes. I was the one who emerged, in surgical scrubs, wristband securely fastened.
On Tuesday, I was waiting for the hand off. The plastic bag containing his belongings that I would hold until he was assigned to a room. I'm sure this process was no more than ten minutes. It felt like three hours. I don't like the shoe on the other foot. I was a nervous wreck despite the fact that the surgery was a "no big deal" thing. It was still anesthesia and his body would be invaded by surgical instruments. The hospital was very busy. The surgeon was delayed. We arrived at 11AM for a 12:30 date in the OR. At 5PM, they wheeled him out of the "holding area" to The Doors. I stood on one side after kissing him one last time.... at the suggestion of the anesthesiologist.... "Mom, one quick hug til you see him in PACU?" The anesthesiologist definitely has kids.
I listened to him spell his name a dozen times. "Date of birth, please?" and then, "What are you having done today?" I listened to no less than five nurses describe what was going to happen once he was brought into the operating room. While his surgery was not at the same hospital where I've been a frequent flier, coincidentally, I DID have surgery at "my son's hospital" to have a neuroma removed from my foot. My surgery was scheduled well in advance of my annual mammography and the shit hit the fan the day before my surgery. Literally. My girlfriend took me from my foot surgery, to the radiologist to pick up the images and then, to Sloan Kettering to have the films reviewed by their radiologist. The point? I was familiar with the procedures in this hospital. Their protocol is a bit different and I'm glad I REMEMBERED. I'm sure I would have been questioning EVERY single thing with a critical eye.
I headed straight to the office to arrange for a night aide. His surgery was too late and I didn't want him to wait if he needed help getting up or if he was in pain, I didn't want him to wait (duh, morphine pump). The night shift nurses are almost always working short staffed. The woman in the office looked at his records and gave me his room number. Told me it was not necessary to get an aide. His private room was right outside an auxiliary nursing station that was staffed with two RN's. He lucked out with the room assignment. I jumped on the invitation to go see for myself. She was right. He would be fine.
Ultimately, I hit the lobby to wait.... for an eternity..... for the surgeon to call me and give me the all clear. I don't like the shoe on the other foot. Even though an eternity was actually about an hour because of the time I killed moving my car from the lot where we checked in to the lot where I would be exiting later that night. I killed time chatting with the pleasant woman who insisted I didn't need an aide. I went up to his room. I contacted his dad. (Aside from a couple of people in his office, he didn't want to tell anyone about this "no big deal" surgery) I meandered the unfamiliar halls. THEN, I settled myself in and staked out my very own lot of lobby real estate.
Thankfully, a patient from the psych ward was trying to make a quick get away. His appearance (think Doc in Back to the Future) and his wristband were a bit of a give away. He was waiting for the security guard at the desk to call him a cab. Then, he remembered! "My car is here. It's parked in that lot over there." Ultimately, the security guard and Doc walked past me to return to the fourth floor. Doc knew they would be calling a cab from the desk on the fourth floor after he showed them..."I'm not crazy. I know they think I am.... ahhh. Who am I kidding, I have mental problems." It was surreal. The lobby is small and given the fact it was almost 6PM, is was quiet. This episode was at least half an hour. Finally, the phone. "He's great, went off without a hitch, they are waking him up now, you can see him in recovery in an hour."
I hit the PACU almost 90 minutes later. Immediately, I turned into empowered patient advocate. They were dragging their feet about releasing him from PACU. "We have to wait for a room assignment." I informed them, his room was assigned. This is the kind of shit that pisses me off. But, I was pleasant. Then, there was some discussion about the length of time he had to remain in their care before being brought up. I glanced at my watch and announced that he was already out of surgery for well over two hours. Within moments, we were on our way to his room. He was in PACU during the shift change and these delays were more about everyone being brought up to speed than what was in the best interest of the patient. Who happened to be MY son. And did I mention I don't like that shoe on the other foot?
The night nurses stationed right outside his door were young, warm and caring. And not overwhelmed. I left him knowing he was in good hands. When I arrived the following morning to bring him home, there was a bit of a medical snafu and they were hesitant about discharging him. And again, three different people dispensing all sorts of information. And again, I stepped in. Ultimately, he did have to stay another night and the shoe is getting terribly uncomfortable.
What began Monday evening as the pre-surgical phase of the caregiving has now turned into post hospitalization care. Organizing all of his stuff once we got home. Getting him situated. Filling scripts. Dispensing meds. Making sure all of the dietary restrictions due to the "snafu" are covered...... I was prepared. But that's the thing. I just saw, first hand, up close and personal, what happens to the caregiver when a curve is thrown. I got it done. Left him for less then ONE HOUR to fill in the essentials and was an absolute wreck the entire time I was out. And he is totally mobile. And his pain is totally managed. He is fine.
And me? The shoe on the other foot??? I'm reaching for the anxiety meds and my foot is a blistered and bloody mess.
I always held The Caregivers in the highest regard. They are at the top of the pyramid. Today, I learned that pyramid nearly scrapes the sky. Caregivers reside closer to angels than anyone else on the planet. ANYONE. Bar None..... I owe lots of thanks to lots of people. Obviously, mom but tomorrow morning, I'll start by thanking my son.
Wednesday, April 4, 2012
UNCUT AND UNCORRECTED
Why do I talk about my health in such a public forum? That is today's prompt..... write without stopping. THIS could become very funny, completely incohesive and choppy, incorrectly punctuated and finally, let's just add auto correct to the mix.... Might actually highlight my claim to my brain....
I write about my health to help others learn about their own health. I never anticipated that I would become an activist when I began blogging. I thought I would stick to the silliness of chemobrain and there are plenty of days, I still do that. Then, there are days when something really irks me and apparently, I need to chill when I see something that is wrong. But, I can't chill and I won't chill because I'm not a do nothing kind of person. I'm not at the forefront of anything, but I write about my health to bring my own experience to the table.
I believe that it is of utmost important for each of us to be An Empowered Patient.... to be our own advocate..... to understand our diagnosis..... to ask questions of our doctors...... to expect answers, respectful explanations... not simply "because that's the way it is." When I was diagnosed with breast cancer, the actual diagnosis part played out over a three month period of time. I had time to do my homework and I had a good foundation of cancer language by the time I actually heard the words. It helped.
I am an open book with what happened to me, the decisions I made, the reason I made the choices right for me. I hope writing helps others realize there can be, at times, many choices and it's not easy to make a decision. When given options, it can be daunting. I didn't go to med school. I don't know what to do.... and then, STOP... This is my body. I need to learn about what is happening and ACT. What is right for me may not be okay with another person whose diagnosis is exactly the same.
Sometimes I am frightened and I reach out through this blog for support. Sometimes, it is because I like to think that someone, SOMEWHERE is nodding there head in agreement over what I am sharing. Maybe one person feels a bit less lonely and a tad bit validated because they can relate to what I shared.
I began writing to "unclog" my brain. I continue because there is such a sense of community and a sense of support. Speaking only from the point of a breast cancer patient/survivor, I know there are many treatment choices. Mostly, I want people to realize they should be getting all of their options before they make decisions. AND, it is most important that they understand as much as they can about the choices they do make. I certainly don't have many answers, I do have some. But I know how to ask "good questions" and I learned how to decipher the answers. Cancer has a language all its own.
It's not black and white...... especially with breast cancer...... It's about understanding the grey... and I write hoping to shine a light on that.... and Self Advocating is of utmost importance.
OK... THAT's what my writing looks like without edits, corrections or the time to really dig into the corners of my brain...
NOW do you believe I have chemobrain? ;)
I write about my health to help others learn about their own health. I never anticipated that I would become an activist when I began blogging. I thought I would stick to the silliness of chemobrain and there are plenty of days, I still do that. Then, there are days when something really irks me and apparently, I need to chill when I see something that is wrong. But, I can't chill and I won't chill because I'm not a do nothing kind of person. I'm not at the forefront of anything, but I write about my health to bring my own experience to the table.
I believe that it is of utmost important for each of us to be An Empowered Patient.... to be our own advocate..... to understand our diagnosis..... to ask questions of our doctors...... to expect answers, respectful explanations... not simply "because that's the way it is." When I was diagnosed with breast cancer, the actual diagnosis part played out over a three month period of time. I had time to do my homework and I had a good foundation of cancer language by the time I actually heard the words. It helped.
I am an open book with what happened to me, the decisions I made, the reason I made the choices right for me. I hope writing helps others realize there can be, at times, many choices and it's not easy to make a decision. When given options, it can be daunting. I didn't go to med school. I don't know what to do.... and then, STOP... This is my body. I need to learn about what is happening and ACT. What is right for me may not be okay with another person whose diagnosis is exactly the same.
Sometimes I am frightened and I reach out through this blog for support. Sometimes, it is because I like to think that someone, SOMEWHERE is nodding there head in agreement over what I am sharing. Maybe one person feels a bit less lonely and a tad bit validated because they can relate to what I shared.
I began writing to "unclog" my brain. I continue because there is such a sense of community and a sense of support. Speaking only from the point of a breast cancer patient/survivor, I know there are many treatment choices. Mostly, I want people to realize they should be getting all of their options before they make decisions. AND, it is most important that they understand as much as they can about the choices they do make. I certainly don't have many answers, I do have some. But I know how to ask "good questions" and I learned how to decipher the answers. Cancer has a language all its own.
It's not black and white...... especially with breast cancer...... It's about understanding the grey... and I write hoping to shine a light on that.... and Self Advocating is of utmost importance.
OK... THAT's what my writing looks like without edits, corrections or the time to really dig into the corners of my brain...
NOW do you believe I have chemobrain? ;)
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