Thank you for feedback on the emotional and sad post about the beautiful women we have recently lost in our Austin community. I know commenting on this blog is darn tough, and I will address that in a post soon. But I did want to immediately reply to some of the comments I received.
I heard that hearing such sad stories makes people feel awful and also helpless. I can't really change the awful part of it because it is the harsh reality, but I can certainly suggest things to do.
As you have heard me say before, donations to the right organizations are very meaningful. In my opinion, the areas on which to focus are two-fold: research and immediate support. I say cut out a lot of the awareness at this point, or perhaps turn awareness campaigns to other cancer efforts that desire the publicity.
Research is of utmost importance if we want to halt the passing of women from breast cancer. Specifically, research surrounding metastatic breast cancer. Metastatic BC (or stage 4) is the type of BC that kills. I will suggest two national organizations here. First is Metavivor, the first organization to raise funds solely for stage 4 research and support. Metavivor is run by volunteers, many of whom have metastatic BC, and generally donates 100% of donations to funding research for stage 4 BC. Another good organization funding research is Breast Cancer Research Foundation. A respectable 88% of donations are channeled to breast cancer research.
If research is the marathon portion of where funds need to go, then support for BC patients and their families is the sprint. People facing a diagnosis with confusion and uncertainty, overwhelmed by treatment options and effects and/or reeling from how cancer has changed their lives need help. This is where I would suggest local investigation. I am not aware of a national support organization to which I would feel comfortable directing people at this time. In Austin, I have two groups that are very near and dear to my heart. Breast Cancer Resource Center does amazing work helping men and women going through treatment by assigning them a patient navigator and connecting them with other people who are going through or have been through the same thing. For children of parents with a terminal illness or disease, we are very fortunate to have Wonders & Worries, an organization that helped our children tremendously during my treatment. W&W provides age-appropriate support groups and counseling for children ages 5-18.
On top of monetary donations, donating time and services is also very helpful. Find local groups and reach out to them to see how you can help. Perhaps there's a fundraising event where volunteer service is needed. Maybe craft supplies would be helpful to some auxiliary organizations. You never know and it never hurts to ask.
Finally, and this might sound a bit silly and and obvious, but reach out to any friends or family members facing a cancer diagnosis and treatment. Often people don't know what to say or are frightened to "bother" people during this time, but I can tell you from experience a call or email is very appreciated. Rather than avoiding a friend or neighbor, err on the side of caution and don't say insensitive things. Especially avoid stories of someone you know who had BC and is thriving/had a horrible time with treatment/died (happens all.the.time.). Avoid saying "I know exactly how you feel because I had a weird mammogram and had to have a biopsy; it was so scary until it came back negative!" (Also happens often) Avoid telling the person that if they only ate kale/drank apple cider vinegar/took cur cumin, they would be cured (chances are they've heard or read about it anyway and unless you are a professional scientific researcher and feel that results of a clinical study you are working on might hold the cure, then please refrain). Avoid saying "Call me if you need anything!" (This is meant to be helpful but it is so much better if you can specifically offer something, or text before going to Costco/Target/grocery and ask if they need anything)
What you can say: I am really sorry.
I don't know what to say.
I wish I could help somehow.
I am going to the grocery store tomorrow, do you need anything?
Are you craving any particular food that I could have delivered for you?
If you feel like watching a silly movie, I would love to have you over or come to you.
Can I take your dry cleaning in?
Would your kids like to come over for a playdate this weekend while you take a long nap?
Do you want anyone to sit with you during chemo?
Can I drive you to radiation this week?
If you need to list someone as an emergency contact, I am happy to be that person.
I think you get the idea. Show up, ask specifically how you can help (both person-to-person or with an organization) and investigate ways to help those around you. It will be appreciated and it will make a difference.
Monday, October 24, 2016
Wednesday, October 19, 2016
Lifer angels
The scariest part of being a breast cancer survivor is the constant fear of having a recurrence or finding out that somehow your cancer has metastasized. About 1/3 of all women initially diagnosed with stages 0-III breast cancer will later find out they have metastatic--also called stage IV--breast cancer. These women often refer to themselves as "lifers," referring to the fact that they will be in treatment for breast cancer for the remainder of their lives.
In 2015 and 2016, my good friend Suzi and I have participated in an amazing, empowering fundraiser called Art Bra. Art Bra benefits Breast Cancer Resource Center (BCRC), a local group that provides all sorts of amazing support and guidance for central Texas women who are battling or have battled breast cancer. It has been an enormous honor to have the chance to model these beautiful custom garments created by local artists as an expression of their experiences, hopes, fears that surround breast cancer. Lots of money is raised for BCRC and survivors/fighters/lifers join together for a chance to feel strong and beautiful. It is truly an amazing night.
One of the hardest parts of being involved in Art Bra is witnessing fellow models navigate deteriorating health. I have been brought to my knees, praying and trying to process the difficult treatments these women endure. I have cried as I heard of their passing. I want to share three beautiful faces of women we lost to metastatic breast cancer over the past year. I was not close friends with any of these women but had the honor to meet them, talk with them and model with them during the Art Bra process. These are some of the strongest reminders of why we need research, not ribbons.
Holley Kitchen became famous overnight when her YouTube post on metastatic breast cancer went viral with over 50 million views. She passed away at the age of 42; her husband and two young sons survive her.
Amber Gillespie was in her mid-20s when she was initially diagnosed. By her late 20s, her cancer had spread and she passed away at the age of 30.
Yesterday, Courtney Lasater passed away at the age of 36. Her husband and 18-month -old son survive her.
These women were all kind, smart and beautiful. They all died far too young. Every single one of these women was diagnosed at a lower stage; they all had the cancer come back as stage IV. Please do not assume that early detection saves lives; each of these three underwent chemo and surgery when they were initially diagnosed.
Currently, only 7% of research funding is focused on metastatic breast cancer. Don't you agree it needs to be more? Metastatic breast cancer is the breast cancer that kills. Stage IV needs more and these women are the absolutely heartbreaking proof.
Monday, October 10, 2016
You are what you eat
We all are aware of the benefits of good nutrition. While I was going through treatment, I was hyperaware of any and everything I was putting into my body. I have to admit I have relaxed a little bit, but am still quite conscious of my family's diet. Probably to the annoyance of friends and family at times...
I read and used the following two books and found them fascinating and helpful:
To arm yourself with knowledge, check out Anticancer: A New Way of Life. To put that knowledge into action during and after treatment, refer to Cancer Fighting Kitchen cookbook.
There are countless websites and books devoted to nutrition for fighting cancer and to help heal from cancer and treatment. I think the most important thing is to find a reliable source that works for you.
Remember to drink lots of water during chemo. Sometimes water tastes like stale metal shavings due to the chemo side effects. If that is the case, infused waters can be a godsend.
There are so many fresh and healthy subscription meal services these days. We would have jumped all over that as an option during my treatment. I think it's great to have these options.
The main thing to remember is to be gentle with yourself and make the best choices you can.
I read and used the following two books and found them fascinating and helpful:
To arm yourself with knowledge, check out Anticancer: A New Way of Life. To put that knowledge into action during and after treatment, refer to Cancer Fighting Kitchen cookbook.
There are countless websites and books devoted to nutrition for fighting cancer and to help heal from cancer and treatment. I think the most important thing is to find a reliable source that works for you.
Remember to drink lots of water during chemo. Sometimes water tastes like stale metal shavings due to the chemo side effects. If that is the case, infused waters can be a godsend.
There are so many fresh and healthy subscription meal services these days. We would have jumped all over that as an option during my treatment. I think it's great to have these options.
The main thing to remember is to be gentle with yourself and make the best choices you can.
Pink purchases
Being mindful of what you purchase during the month of October--or any other month--that is marketed with pink ribbons has been coined "think before you pink," a campaign started by Breast Cancer Action.
By no means do I oppose people wearing pink or sporting pink ribbons. I also support smart purchases that will in fact benefit good organizations. When you see items for sale claiming they benefit breast cancer research or awareness, please read the fine print. First, find out how much will be donated? A percentage or actual dollar amount is necessary; when the marketing spin is "a portion of all proceeds," that can mean anything. Ten cents for every thousand units sold is not impressive or impactful in most cases. Second, determine where the funds go. Specific organizations need to be cited. If you are dubious about who benefits, google the group and make your own decision.
Here is a helpful list of questions published by Breast Cancer Action--use these as a guide when purchasing:
- Does any money from this purchase go to support breast cancer programs? How much?
- What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?
- Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?
- Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?
If you feel like buying foods or goods are the best means to help men and women living with breast cancer, check out the following organizations and consider donating directly. Or find another worthy group funding research or providing support and services for breast cancer patients and their families.
Metavivor
Breast Cancer Research Foundation
Theresa's Research Foundation
Breast Cancer Resource Center (Austin TX)
Wonder & Worries (Austin TX)
Don't let corporations take advantage of your altruism. Think before you pink. Thank you for caring.
Phthalates and parabens and SLS, oh my!
So many nasty chemicals, so little time to discuss. It's actually kind of overwhelming tackling this issue, because there are just so darn many chemicals to discuss. One scary thing to keep in mind: while the EU has banned over 1300 harmful chemicals from cosmetics and body care products, the FDA has only banned 11. Yikes.
If you use anything that resembles these items, there are several types of potentially dangerous chemical additives that may be lurking in your products.
This is a umbrella topic that I foresee returning to many, many times over. But today I will start with three biggies that are quite common: phthalates (pronounced THAL-ates), parabens and sodium laurel sulfates/sodium laureate sulfates. All of these are considered endocrine disruptors. This means they can produce all sorts of scary side effects, including fertility issues, mimicking hormones (causing overproduction and overstimulation) and possibly even cancer. Please keep in mind that all my information comes from my own amateur research and I am not an expert, just a mindful consumer.
Phthalates are a chemical found in or on just about anything you can imagine. Oftentimes, it is used to make hard plastics more malleable. In general, I have found it is best to avoid plastics whenever possible. Which is so very hard--impossible?--to do. But consider ridding your home of plastic bottles, plates and other eating vessels. Never EVER microwave food in plastic. Invest in glass or stainless steel water bottles for you and your children. Replace plastic leftover containers with glass and plastic plates with ceramics. A pretty good description of phthalates can be found on the greenliving website.
Phthalates also surface in cosmetics and skin care products as a means to carry scents or fragrances. The tricky thing here is that phthalates do not need to be listed as an ingredient. Anything that has vaguely labeled "fragrance" or "parfum" could be harboring these nasty chemicals. Phthalates are also found in flooring materials, toys, on paper receipts, even our water supply. It seems insurmountable, but here are a few tips to minimize exposure.
Parabens are another biggie to avoid as they are used as preservatives in many cosmetic and body care products. When reviewing labels, look for mehtylparaben, ethylparaben, propylparaben, butylparaben and isobutylparaben. There are ongoing studies examining the link between parabens and breast cancer; some scientists believe there is a direct correlation between the use of items with parabens and the development of the disease. There's a fairly unbiased report on parabens here.
The third additive I want to discuss today is sodium laurel sulfates/sodium laureth sulfates, also referred to as SLS. These chemicals are found primarily in shampoos and soaps because they create the desirable sudsy foam effect. Again, as an endocrine disruptor, SLS can cause reproductive defects and possibly cancer. And SLS often irritates skin and eyes. Best to find better alternatives for those bubble baths!
After my breast cancer diagnosis, I maniacally ransacked our bathroom cabinets and tossed out an unbelievable amount of make-up, shampoo, conditioner, soap and bubble bath. Everything seemed to have scary stuff in it! As I went through this process, I recall being so angry at myself for not paying more attention, for falling for marketing ploys for several products or just blindly trusting established name brands. And I was mad at these name brands for pumping chemicals into things I was putting on my children, my husband and myself. But I also realized ultimately I have to be the advocate for my family, I have to start paying attention. And I have gone down the rabbit hole, folks!
The Environmental Working Group website is a great resource for many different areas of research. Check out the skin deep database to find out what the safety ranking of your favorite cosmetics and body care products is, read about cancer prevention, the safest sunscreens, healthy eating and all sorts of other topics.
Thank you for reading. Take good care of yourself and loved ones!
If you use anything that resembles these items, there are several types of potentially dangerous chemical additives that may be lurking in your products.
This is a umbrella topic that I foresee returning to many, many times over. But today I will start with three biggies that are quite common: phthalates (pronounced THAL-ates), parabens and sodium laurel sulfates/sodium laureate sulfates. All of these are considered endocrine disruptors. This means they can produce all sorts of scary side effects, including fertility issues, mimicking hormones (causing overproduction and overstimulation) and possibly even cancer. Please keep in mind that all my information comes from my own amateur research and I am not an expert, just a mindful consumer.
Phthalates are a chemical found in or on just about anything you can imagine. Oftentimes, it is used to make hard plastics more malleable. In general, I have found it is best to avoid plastics whenever possible. Which is so very hard--impossible?--to do. But consider ridding your home of plastic bottles, plates and other eating vessels. Never EVER microwave food in plastic. Invest in glass or stainless steel water bottles for you and your children. Replace plastic leftover containers with glass and plastic plates with ceramics. A pretty good description of phthalates can be found on the greenliving website.
Phthalates also surface in cosmetics and skin care products as a means to carry scents or fragrances. The tricky thing here is that phthalates do not need to be listed as an ingredient. Anything that has vaguely labeled "fragrance" or "parfum" could be harboring these nasty chemicals. Phthalates are also found in flooring materials, toys, on paper receipts, even our water supply. It seems insurmountable, but here are a few tips to minimize exposure.
Parabens are another biggie to avoid as they are used as preservatives in many cosmetic and body care products. When reviewing labels, look for mehtylparaben, ethylparaben, propylparaben, butylparaben and isobutylparaben. There are ongoing studies examining the link between parabens and breast cancer; some scientists believe there is a direct correlation between the use of items with parabens and the development of the disease. There's a fairly unbiased report on parabens here.
The third additive I want to discuss today is sodium laurel sulfates/sodium laureth sulfates, also referred to as SLS. These chemicals are found primarily in shampoos and soaps because they create the desirable sudsy foam effect. Again, as an endocrine disruptor, SLS can cause reproductive defects and possibly cancer. And SLS often irritates skin and eyes. Best to find better alternatives for those bubble baths!
Since your skin is your largest organ, it's so important to consider what we are slathering on ourselves. Everything is absorbed and distributed into our bodies. Some specialists argue that what you put on your skin has more impact than what you eat! I am not sold on that idea; I think both are so very important.
Nonehtless, the cosmetics and body care industry has a multi-multi-billion dollar annual revenue. Some companies do care and are mindful of the ingredients in their products. It seems like there are more and more paraben, phthalate and SLS-free options out there. But it's best for you to arm yourself with knowledge about these potentially harmful ingredients. Do the same thing in the drugstore aisles that you do in the supermarket: read labels! Here are a few practices labels. You might notice some parabens, SLS and the mysterious "fragrance/parfum" in these!
After my breast cancer diagnosis, I maniacally ransacked our bathroom cabinets and tossed out an unbelievable amount of make-up, shampoo, conditioner, soap and bubble bath. Everything seemed to have scary stuff in it! As I went through this process, I recall being so angry at myself for not paying more attention, for falling for marketing ploys for several products or just blindly trusting established name brands. And I was mad at these name brands for pumping chemicals into things I was putting on my children, my husband and myself. But I also realized ultimately I have to be the advocate for my family, I have to start paying attention. And I have gone down the rabbit hole, folks!
The Environmental Working Group website is a great resource for many different areas of research. Check out the skin deep database to find out what the safety ranking of your favorite cosmetics and body care products is, read about cancer prevention, the safest sunscreens, healthy eating and all sorts of other topics.
Thank you for reading. Take good care of yourself and loved ones!
Sunday, October 9, 2016
Back to blogging
Hi friends! I am going to hope that the third try is the charm and that I will stick with this blog more consistently than the previous two. In all fairness, Bain Babble was just for family to see pics of the kids and Team Shelly chronicled my breast cancer treatment months. For those interested in reading about my breast cancer treatment, visit Team Shelly. This is going to have a different feel and a fresh approach, at least for me.
A Facebook post about being wary of all things pink during October blew up a bit, in a good way. I had the opportunity to write an essay for the Houston Chronicle exploring the issues I mentioned in that FB post. Read the article here if you are interested.
Two comments I have heard again and again this week after the article was posted online (paraphrased):
A Facebook post about being wary of all things pink during October blew up a bit, in a good way. I had the opportunity to write an essay for the Houston Chronicle exploring the issues I mentioned in that FB post. Read the article here if you are interested.
Two comments I have heard again and again this week after the article was posted online (paraphrased):
- Thank you for writing this! Breast cancer isn't cute or fun and seeing the pink constantly triggers memories and also makes me feel like the money that went to a coffee mug or knee socks could have been put toward research to find a cure for stage IV breast cancer. Consumers are being duped into buying swag under the guise of "awareness" but really it's all a big marketing ploy. (Okay that last last sentence was more from me)
- Tell me more about the phthalates and the parabens. I don't know about these chemicals.
And thus this blog was born, because those two issues, while not entirely related, are very near and dear to my heart. I feel compelled to share my NON-EXPERT advice with anyone who is willing to listen/read about it.
Stay tuned for upcoming posts tackling the aforementioned issues and others. And thank you for listening.
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