A couple of days before I went into surgery, I went to the store to find me a house coat. I knew I would have a few cords coming out of my body for a couple of weeks after surgery, so I needed something that I could either zip or button up in front. I came home, put it on, and showed Neil and then burst out laughing. It is exactly what my grandmother used to wear every day whenever I saw her. I have my very own "granny coat."
Neil found another one for me the next day that is a little more hip because it has a hoodie and little matching socks with a fur cuff. That's right. I'm one stylyin' little granny. But that's not all. I now have an incision about four times the width of my C-section scars. It is from hip to hip. Because I am not supposed to put any stress at all on that incision, my surgeon has told me that I need to walk hunched over for a few weeks. Well, that causes some lower back pain issues, so we were able to borrow a walker from a friend of a friend (thank you, thank you!), and now the granny shuffle is complete. Granny house coat, furry socks, a hunched posture and a walker. Add the little shuffle and I am one sexy little granny librarian girl. I'm supposed to get out and do some laps around the cul-de-sac, so who knows, maybe some of you will be lucky enough to see me in action this week. If not, my mother has requested pictures. What the heck. I'll post them here once I get some taken.
More details about the surgery and hospital experience in a couple of days. For now, I am recovering somewhat comfortably at home. Thanks to everyone for all the prayers, support, food, babysitting, and healthy, happy vibes that have been sent my way. I'll keep you posted
Sunday, December 4, 2011
Monday, November 28, 2011
Two days and counting...
Two days to surgery. I'm glad to finally be there. It won't happen exactly as I had planned, but this situation is a close second and I just want to get it done.
My surgery is on Wednesday, all day (12 hour surgery) at the Intermountain Medical Center in Murray, Utah. Their general number is 801.507.7000. I should be on the patient directory if anyone wants to check in. Or you can just call Neil's cell. That would probaby be better actually. I don't plan on being conscious for most of my stay there. (Finally, a decent nap!) I'll check in early Wednesday morning and probably be home by Saturday afternoon sometime. Woohoo!
My surgery is on Wednesday, all day (12 hour surgery) at the Intermountain Medical Center in Murray, Utah. Their general number is 801.507.7000. I should be on the patient directory if anyone wants to check in. Or you can just call Neil's cell. That would probaby be better actually. I don't plan on being conscious for most of my stay there. (Finally, a decent nap!) I'll check in early Wednesday morning and probably be home by Saturday afternoon sometime. Woohoo!
Sunday, November 6, 2011
It can only get better from here.
I went and saw my new surgeon on Friday. Her name is June Chen. She is really nice. It almost seemed like a formality. I've spent so much time in the last year reading about the procedure and talking with other doctors and cancer patients that I really didn't have any questions for her. I'm sure I just gave her the impression that I was more than just a little clueless, because after a while she looked at me and said, "Do you need some time to think all this over." I think she was a little surprised when I immediately answered back. "No. I want this done by the end of the year. In fact, your assistant already has me pencilled in for a surgery date of November 30th."
At some point during the consultation she asked me why I wasn't going to stick with the surgeons at the Huntsman Cancer Hospital where I've received all my other treatment. I just said, "Because I've heard very good things about you." I have. When I started looking into surgeons, I came up with a list of top three. Massey was number one, she was number two, and I still have one backup. Though I'm really hoping I don't have to go there. I'm so tired of all this.
I did reach a new low that day though. I thought I lost all sense of dignity that day of my first breast MRI when I walked into the room and saw three big guys waiting for me. Well, when you compare that with standing in a small room in front of a total stranger with no clothes on, in my post-chemo, post-steroids, post-second worst year of my life body, while she snaps about 30 pictures with her digital camera... Well, let's just say, it wasn't the most ego boosting moment of my life.
At some point during the consultation she asked me why I wasn't going to stick with the surgeons at the Huntsman Cancer Hospital where I've received all my other treatment. I just said, "Because I've heard very good things about you." I have. When I started looking into surgeons, I came up with a list of top three. Massey was number one, she was number two, and I still have one backup. Though I'm really hoping I don't have to go there. I'm so tired of all this.
I did reach a new low that day though. I thought I lost all sense of dignity that day of my first breast MRI when I walked into the room and saw three big guys waiting for me. Well, when you compare that with standing in a small room in front of a total stranger with no clothes on, in my post-chemo, post-steroids, post-second worst year of my life body, while she snaps about 30 pictures with her digital camera... Well, let's just say, it wasn't the most ego boosting moment of my life.
Tuesday, November 1, 2011
Change of plans. Again.
Since last February I've been planning on having my surgery done by Dr. Marga Massey. She works out of the St. Charles Surgical Center in New Orleans. It has the only clinic in the world dedicated entirely to breast reconstruction. She and her colleagues are, I believe, the very best in the country at what they do. (Not to mention that I think she is an amazingly kind and compassionate individual. I absolutely adore her.) I would have flown out next week, on the 8th, had my surgery on the 10th, stayed in the hospital for 4 nights and flew home on the 18th. Everything was arranged. Then I guess things were just a little too organized and that I needed a little more anxiety and stress in my life so I decided to change everything.
I think it was just a little more than I could handle right now. I wasn't nervous about the surgery. That little, dark broom closet in the back of my head has worked beautifully once again and I haven't had a moment's anxiety about the surgery itself. My anxiety was stemmed from all the arrangements that had to be made in order for me and my husband to take off and leave my children for 10 days. I probably could have managed it if it weren't for the fact that we haven't been able to keep them both well for more than 3 days in a row, and the recent death of our furnace, necesitating a complete reconstruction of the ducts in our home and installation of new furnace and water heater just seemed to push my nerves over the edge. As soon as I decided to cancel everything and find a surgeon locally, I felt much less anxious about life. My new surgeon will probably not have 20 years of experience in microsurgical breast reconstruction and she is probably not as insanely obsessed with building the absolute perfect breast, but when it all comes right down to it, I think I'm okay with just a little less than perfection if it means keeping my sanity intact.
Neil wasn't too thrilled about my deciding to throw a big ole' wrench into everything. He wanted me to see the best. When he was sick, I made him fly out to New York so he could be cared for the best surgeons in the world for his condition. He wanted to do the same for me, I think. I tried to point out that I didn't think you could fairly compare brain surgery with a boob job (an extremely complicated boob job, but a boob job nonetheless), but he didn't really go for it.
So that's the latest. My tentative surgery date is now November 30th. I'll be sure to keep everyone posted on what I hope is the last phase of my little adventure with breast cancer.
I think it was just a little more than I could handle right now. I wasn't nervous about the surgery. That little, dark broom closet in the back of my head has worked beautifully once again and I haven't had a moment's anxiety about the surgery itself. My anxiety was stemmed from all the arrangements that had to be made in order for me and my husband to take off and leave my children for 10 days. I probably could have managed it if it weren't for the fact that we haven't been able to keep them both well for more than 3 days in a row, and the recent death of our furnace, necesitating a complete reconstruction of the ducts in our home and installation of new furnace and water heater just seemed to push my nerves over the edge. As soon as I decided to cancel everything and find a surgeon locally, I felt much less anxious about life. My new surgeon will probably not have 20 years of experience in microsurgical breast reconstruction and she is probably not as insanely obsessed with building the absolute perfect breast, but when it all comes right down to it, I think I'm okay with just a little less than perfection if it means keeping my sanity intact.
Neil wasn't too thrilled about my deciding to throw a big ole' wrench into everything. He wanted me to see the best. When he was sick, I made him fly out to New York so he could be cared for the best surgeons in the world for his condition. He wanted to do the same for me, I think. I tried to point out that I didn't think you could fairly compare brain surgery with a boob job (an extremely complicated boob job, but a boob job nonetheless), but he didn't really go for it.
So that's the latest. My tentative surgery date is now November 30th. I'll be sure to keep everyone posted on what I hope is the last phase of my little adventure with breast cancer.
Sunday, August 28, 2011
I am a librarian on a mission.
So after I'd waded around in my self-imposed depression for about a month, I came across a book called Not Just a Pretty Face: The Ugly Side of the Beauty Industry by Stacy Malkan. This book was just as jarring as the previous one I'd read, but the difference was that it gave me an idea of what to do about it.
Here is the book description I swiped off Amazon:
As I learned about the carcinogenic and toxic chemicals in everyday products I was slathering all over my scalp, skin and face every day, I was absolutely stunned. And remember ladies, "cosmetics" are not just limited to lipstick and mascara. Think deoderant, hand lotion, toothpaste, baby shampoo. These are chemicals that are directly linked to cancer, ADHD, autism and a number of other disorders and birth defects. And yet there they are, right in my facial moisturizer.
WHY HADN'T ANYONE TOLD ME THAT???? Why hadn't anyone told me that the "extra-sensitive" baby lotion that I had been rubbing all over my 8 month old baby every night, almost since the day she was born was filled with endocrine disruptors that would act as synthetic estrogen in her blood stream, significantly increasing her chances for cancer 20 or 25 years down the road? Why hadn't anyone told me that most of the major sunscreens contain ingredients that increase the risk of and/or speed the development of cancer? (Click here for more info about that little tidbit.) And here I thought I was being a good little mom by gooping both my kids up with that stuff every time they went out in the sun. Why was the FDA allowing that stuff to be sold in the stores? What happened to the public's right to know? What federal agency was supposed to be protecting us from this kind of thing? Why weren't the products sporting labels letting people know that some of the ingredients used were carcinogenic?
I should mention here that I was seriously tempted to type this all up in all caps, because just writing this, I'm getting all worked up over it again. But I thought that would be a bit much. Just know that I am pretty stinking mad and am screaming at the top of my lungs in my head.
Well, shortly after finishing that book, I got online and started working my way through the Environmental Working Group's Skin Deep Cosmetics Database. Just as an FYI, should you choose to actually continue reading this blog, you will hear a lot about the Environmental Working Group. Their site is http://www.ewg.org/ They are simply amazing. Anyway, EWG developed a database where they did independent testing of cosmetics products. They list all the individual ingredients, along with the various diseases/disorders each ingredient may be linked to. Then, they rate the product on a scale of 0 to 10. Zero being a safe, natural score and 10 being toxic/carcinogenic.
I was horrified to see how many of my products were in the 8-10 range. So, I started cleaning house. I dumped out lotions, and lip balms, and mascara. I tossed toothpaste, suncreen, foundation, diaper cream, baby lotion, and baby shampoo. Then I slowly started replenishing with things that I was more certain wouldn't make my family, and especially my children, sick in the future.
I hope you'll read the book. There is a lot that society as a whole needs to understand about the cosmetics industry in the United States. Like, for example, that it is one of the least regulated industries in the country. That means that there is no federal agency standing over their shoulder making sure they conform to some list of preestablished safety guidelines. They are self regulated. This basically means they can put whatever they want into your favorite lotion or lipstick and they don't answer to anyone for it. The European Union has banned approximately 1300 ingredients from all cosmetics. The United States has banned a fraction of that. You see, Europe has a very different approach with the various chemical industries. They say that chemicals may only be used after they are proven safe. Makes sense, right? But the American government takes a slightly different approach. They say that various industries may use whatever chemicals they wish in their products until they are proven unsafe." It's basically this "show me the bodies" mentality that has me completely baffled. Our government won't ban a chemical until it has been proven that people are getting sick or dying because of exposure to it. Nice.
There is one chapter in the book on green chemistry. It's not something I was familiar with. It was fascinating. It talked about a small, but growing movement of green chemists that are trying to develop substances and products that are needed by our society by mimicing nature. For example, when cabinets are made, it is necessary to use a very strong adhesive. The glue is toxic. So some green chemists looked to nature to find a safer alternative. Have you ever seen mussells cling to a rock? You can't pry them off. They looked at the chemical makeup of the substance that the mussells produce to adhere to the rock and replicated it creating a perfectly natural, non-toxic alternative to the glue that was making people sick.
I have a friend with a son that is currently getting his degree in chemistry. I sent him an email and asked him to read that one chapter in the book. As a future chemist, I was interested in his opinion. I guess I was hoping that he would be someone that wanted to make a difference. Someone that would see the importance of looking beyond the blather that he was being fed by the very industries that were doing us so much damage. I was looking for a champion of sorts. I was really surprised by his response. I don't have the email anymore, so I'm defintely going to have to paraphrase, but he said something like this:
As a chemist, I don't think I will be that concerned about developing better lipstick and mascara for a bunch of anorexic supermodels. It is true that some ingredients in cosmetics have carcinogenic properties, but they are really in such tiny amounts, that there is no danger in it. And the whole idea of green chemistry, though an interesting one, is not all that realistic. It is just way too expensive.
I think I read the email two or three times before I let out a modest string of obsenities and deleted the email. Though, I can tell you that I fumed over it for days, if not weeks. I never wrote him back. I adore his family and didn't want to hurt feelings, but I must have written my response at least 50 times in my head. This is what it said: (I'm sorry, but the all caps is a must for this one.)
DAVID!!!!! (Names have been changed to protect the guilty)
THAT HAD TO BE THE MOST IGNORANT AND ARROGANT THING I HAVE EVER HEARD! YOU SHOULD BE ASHAMED OF YOURSELF! I FEEL IT NECESSARY TO REMIND YOU THAT THE COSMETICS INDUSTRY PRODUCES PRODUCTS THAT ARE USED BY A MUCH WIDER AUDIENCE THAN THE ANOREXIC SUPERMODEL! HOW ABOUT THAT TOOTHPASTE THAT YOU USED THIS MORNING? OR THE DIAPER CREAM THAT YOUR MOTHER USES ON YOUR BABY SISTER? OR THE SHAMPOO AND DEODERANT THAT YOUR SIBLINGS USE EVERY SINGLE DAY?? AND AS TO YOUR ARGUEMENT THAT THE CARCINOGENIC PROPERTIES ARE AT SUCH LOW LEVELS AS NOT TO DO ANY HARM, ARE YOU AWARE THAT YOU ARE SPOUTING OFF THE VERY SAME BLATHER THAT THE CHEMICAL INDUSTRIES USE? CANCER STARTS WITH ONE CELL, DAVID. ONE CELL THAT MUTATES. ARE THE LEVELS SO LOW THAT IT IS IMPOSSIBLE FOR THEM TO CHANGE ONE CELL? DO YOU KNOW THAT FOR SURE? DOES ANYONE? ARE THE LIVES OF THE PEOPLE YOU LOVE WORTH THE GAMBLE? BESIDES, WHEN YOU ADD UP ALL THOSE "TINY AMOUNTS" IN TOOTHPASTE, SHAMPOO, CONDITIONER, PERFUME, HAIR GEL BODY LOTION, FACIAL MOISTURIZER, LIPSTICK, AFTERSHAVE, ETC. IT'S NOT SUCH A TINY AMOUNT ANYMORE, IS IT?!? I AM PAYING $20+ DOLLARS A BOTTLE FOR SHAMPOO TO USE ON MY CHILDREN, AND WOULD PAY TEN TIMES THAT AMOUNT BECAUSE I AM NOT WILLING TO TAKE THE RISK. IF OTHERS KNEW WHAT I KNOW, THEY WOULD TOO SO DON'T GIVE ME THAT CRAP ABOUT GREEN CHEMISTRY NOT BEING COST EFFECTIVE BECAUSE IT WOULD BE TOO EXPENSIVE!!!
Hope all is going well at school and the family is healthy and happy.
Love,
Marie
Whew! That felt really good. So, you can probably see why I never actually sent the email. In all fairness, I should have had him just read the whole book. Just reading the one chapter out of context probably did not give him enough information to form a sensible, non-irritating opinion.
So, to sum up. This was really the turning point in my journey. This was when I decided there was something I could do to protect myself, my family, and other people that I loved. (Assuming I could explain it to them without them thinking I had turned into a paranoid, hippie, cancer survivor.) I was determined to find a way to make a difference. I was a was a librarian on a mission.
Here is the book description I swiped off Amazon:
Lead in lipstick? 1,4 dioxane in baby soap? Coal tar in shampoo? How is this possible? Simple. The $35 billion cosmetics industry is so powerful they’ve kept themselves unregulated for decades. Not Just a Pretty Face chronicles the quest that led a group of health and environmental activists to the world’s largest cosmetics companies to ask some tough questions:
- Why do companies market themselves as pink ribbon leaders in the fight against breast cancer, yet use hormone-disrupting and carcinogenic chemicals that may contribute to that very disease?
- Why do products used by men and women of childbearing age contain chemicals linked to birth defects and infertility?
As I learned about the carcinogenic and toxic chemicals in everyday products I was slathering all over my scalp, skin and face every day, I was absolutely stunned. And remember ladies, "cosmetics" are not just limited to lipstick and mascara. Think deoderant, hand lotion, toothpaste, baby shampoo. These are chemicals that are directly linked to cancer, ADHD, autism and a number of other disorders and birth defects. And yet there they are, right in my facial moisturizer.
WHY HADN'T ANYONE TOLD ME THAT???? Why hadn't anyone told me that the "extra-sensitive" baby lotion that I had been rubbing all over my 8 month old baby every night, almost since the day she was born was filled with endocrine disruptors that would act as synthetic estrogen in her blood stream, significantly increasing her chances for cancer 20 or 25 years down the road? Why hadn't anyone told me that most of the major sunscreens contain ingredients that increase the risk of and/or speed the development of cancer? (Click here for more info about that little tidbit.) And here I thought I was being a good little mom by gooping both my kids up with that stuff every time they went out in the sun. Why was the FDA allowing that stuff to be sold in the stores? What happened to the public's right to know? What federal agency was supposed to be protecting us from this kind of thing? Why weren't the products sporting labels letting people know that some of the ingredients used were carcinogenic?
I should mention here that I was seriously tempted to type this all up in all caps, because just writing this, I'm getting all worked up over it again. But I thought that would be a bit much. Just know that I am pretty stinking mad and am screaming at the top of my lungs in my head.
Well, shortly after finishing that book, I got online and started working my way through the Environmental Working Group's Skin Deep Cosmetics Database. Just as an FYI, should you choose to actually continue reading this blog, you will hear a lot about the Environmental Working Group. Their site is http://www.ewg.org/ They are simply amazing. Anyway, EWG developed a database where they did independent testing of cosmetics products. They list all the individual ingredients, along with the various diseases/disorders each ingredient may be linked to. Then, they rate the product on a scale of 0 to 10. Zero being a safe, natural score and 10 being toxic/carcinogenic.
I was horrified to see how many of my products were in the 8-10 range. So, I started cleaning house. I dumped out lotions, and lip balms, and mascara. I tossed toothpaste, suncreen, foundation, diaper cream, baby lotion, and baby shampoo. Then I slowly started replenishing with things that I was more certain wouldn't make my family, and especially my children, sick in the future.
I hope you'll read the book. There is a lot that society as a whole needs to understand about the cosmetics industry in the United States. Like, for example, that it is one of the least regulated industries in the country. That means that there is no federal agency standing over their shoulder making sure they conform to some list of preestablished safety guidelines. They are self regulated. This basically means they can put whatever they want into your favorite lotion or lipstick and they don't answer to anyone for it. The European Union has banned approximately 1300 ingredients from all cosmetics. The United States has banned a fraction of that. You see, Europe has a very different approach with the various chemical industries. They say that chemicals may only be used after they are proven safe. Makes sense, right? But the American government takes a slightly different approach. They say that various industries may use whatever chemicals they wish in their products until they are proven unsafe." It's basically this "show me the bodies" mentality that has me completely baffled. Our government won't ban a chemical until it has been proven that people are getting sick or dying because of exposure to it. Nice.
There is one chapter in the book on green chemistry. It's not something I was familiar with. It was fascinating. It talked about a small, but growing movement of green chemists that are trying to develop substances and products that are needed by our society by mimicing nature. For example, when cabinets are made, it is necessary to use a very strong adhesive. The glue is toxic. So some green chemists looked to nature to find a safer alternative. Have you ever seen mussells cling to a rock? You can't pry them off. They looked at the chemical makeup of the substance that the mussells produce to adhere to the rock and replicated it creating a perfectly natural, non-toxic alternative to the glue that was making people sick.
I have a friend with a son that is currently getting his degree in chemistry. I sent him an email and asked him to read that one chapter in the book. As a future chemist, I was interested in his opinion. I guess I was hoping that he would be someone that wanted to make a difference. Someone that would see the importance of looking beyond the blather that he was being fed by the very industries that were doing us so much damage. I was looking for a champion of sorts. I was really surprised by his response. I don't have the email anymore, so I'm defintely going to have to paraphrase, but he said something like this:
As a chemist, I don't think I will be that concerned about developing better lipstick and mascara for a bunch of anorexic supermodels. It is true that some ingredients in cosmetics have carcinogenic properties, but they are really in such tiny amounts, that there is no danger in it. And the whole idea of green chemistry, though an interesting one, is not all that realistic. It is just way too expensive.
I think I read the email two or three times before I let out a modest string of obsenities and deleted the email. Though, I can tell you that I fumed over it for days, if not weeks. I never wrote him back. I adore his family and didn't want to hurt feelings, but I must have written my response at least 50 times in my head. This is what it said: (I'm sorry, but the all caps is a must for this one.)
DAVID!!!!! (Names have been changed to protect the guilty)
THAT HAD TO BE THE MOST IGNORANT AND ARROGANT THING I HAVE EVER HEARD! YOU SHOULD BE ASHAMED OF YOURSELF! I FEEL IT NECESSARY TO REMIND YOU THAT THE COSMETICS INDUSTRY PRODUCES PRODUCTS THAT ARE USED BY A MUCH WIDER AUDIENCE THAN THE ANOREXIC SUPERMODEL! HOW ABOUT THAT TOOTHPASTE THAT YOU USED THIS MORNING? OR THE DIAPER CREAM THAT YOUR MOTHER USES ON YOUR BABY SISTER? OR THE SHAMPOO AND DEODERANT THAT YOUR SIBLINGS USE EVERY SINGLE DAY?? AND AS TO YOUR ARGUEMENT THAT THE CARCINOGENIC PROPERTIES ARE AT SUCH LOW LEVELS AS NOT TO DO ANY HARM, ARE YOU AWARE THAT YOU ARE SPOUTING OFF THE VERY SAME BLATHER THAT THE CHEMICAL INDUSTRIES USE? CANCER STARTS WITH ONE CELL, DAVID. ONE CELL THAT MUTATES. ARE THE LEVELS SO LOW THAT IT IS IMPOSSIBLE FOR THEM TO CHANGE ONE CELL? DO YOU KNOW THAT FOR SURE? DOES ANYONE? ARE THE LIVES OF THE PEOPLE YOU LOVE WORTH THE GAMBLE? BESIDES, WHEN YOU ADD UP ALL THOSE "TINY AMOUNTS" IN TOOTHPASTE, SHAMPOO, CONDITIONER, PERFUME, HAIR GEL BODY LOTION, FACIAL MOISTURIZER, LIPSTICK, AFTERSHAVE, ETC. IT'S NOT SUCH A TINY AMOUNT ANYMORE, IS IT?!? I AM PAYING $20+ DOLLARS A BOTTLE FOR SHAMPOO TO USE ON MY CHILDREN, AND WOULD PAY TEN TIMES THAT AMOUNT BECAUSE I AM NOT WILLING TO TAKE THE RISK. IF OTHERS KNEW WHAT I KNOW, THEY WOULD TOO SO DON'T GIVE ME THAT CRAP ABOUT GREEN CHEMISTRY NOT BEING COST EFFECTIVE BECAUSE IT WOULD BE TOO EXPENSIVE!!!
Hope all is going well at school and the family is healthy and happy.
Love,
Marie
Whew! That felt really good. So, you can probably see why I never actually sent the email. In all fairness, I should have had him just read the whole book. Just reading the one chapter out of context probably did not give him enough information to form a sensible, non-irritating opinion.
So, to sum up. This was really the turning point in my journey. This was when I decided there was something I could do to protect myself, my family, and other people that I loved. (Assuming I could explain it to them without them thinking I had turned into a paranoid, hippie, cancer survivor.) I was determined to find a way to make a difference. I was a was a librarian on a mission.
Tuesday, August 9, 2011
The autoimmune epidemic--Part II
To give the reader an idea of the chemical burden of the average individual, the author walks you through the day of a pretend person named "Becky," who could just as easily be you or I, describing various things like the how breakfast is prepared, doing a quick clean of the house, taking the kids to school, feeding an infant, etc. Then she goes back and describes how at almost every small action, her immune system was bombarded with toxic chemicals. Man made chemicals. Chemicals that simply did not exist in our environment 50-100 years ago. It was simply horrifying.
To be honest. I didn't complete the book. About 75 pages from the end, I just couldn't finish. The anger had melted away into depression. It had gotten too big. I could eliminate some of these toxins that could make my family sick, but how do you control the air your children breathe? How do you keep them safe from endocrine disrupting or carcinogenic chemicals in public areas like playgrounds, libraries, or schools, without locking them in thier rooms indefinitely? It is impossible. I was overwhelmed with a feeling of complete helplessness. My children were doomed to a future laden with cancer, autoimmune issues and other dibilitating health issues. I honestly got to the point where I was seriously considering quitting my job and dragging my family off to some little farm in the country where we could have a little more control over our environment.
I felt that way for about a month. I'm sure I was all sorts of fun to live with. But eventually, I reached the next milestone in my journey that made me feel like there was something I could to to protect my family, even if it was in a very small way.
To be honest. I didn't complete the book. About 75 pages from the end, I just couldn't finish. The anger had melted away into depression. It had gotten too big. I could eliminate some of these toxins that could make my family sick, but how do you control the air your children breathe? How do you keep them safe from endocrine disrupting or carcinogenic chemicals in public areas like playgrounds, libraries, or schools, without locking them in thier rooms indefinitely? It is impossible. I was overwhelmed with a feeling of complete helplessness. My children were doomed to a future laden with cancer, autoimmune issues and other dibilitating health issues. I honestly got to the point where I was seriously considering quitting my job and dragging my family off to some little farm in the country where we could have a little more control over our environment.
I felt that way for about a month. I'm sure I was all sorts of fun to live with. But eventually, I reached the next milestone in my journey that made me feel like there was something I could to to protect my family, even if it was in a very small way.
Sunday, July 10, 2011
The autoimmune epidemic.
This story began around December of 2009. It had been about a month since being diagnosed with an autoimmune disease called Dermatomyositis (DM), a disease in which a person's immune system up and decides that those healthy skin and muscle cells are looking a little too suspicious and launches an offensive, attacking them along with the foreign matter, bacteria, viruses, etc. I had a month's worth of treatment under my belt, which included super doses of steroids, along with a few other medications that were supposed to be keeping my immune system in check. Between the symptoms of the disease and the side effects of the medications, I was pretty miserable. I had a fiery red, itchy rash that covered my face, scalp, arms, hands, neck, chest, and back. I had extreme muscle weakness, particularly in my legs. It's not entirely clear how much of that was due to the all the muscle cells that had been killed off by my own immune system, and how much was a side affect of the steroids, but either way, I had a really hard time moving my legs. The muscles in my core were pretty useless too. I had a hard time getting up even two or three stairs, I couldn't get up off the floor without help, and I shuffled around like a little 90 year old woman. Good times, I'm tellin' ya.
Of course by this time, the librarian girl in me had gone into overdrive and I started pouring over the Internet looking for information on DM and autoimmune diseases. I wanted to know exactly what was happening to my body. I found a book that I purchased called The Autoimmune Epidemic written by Donna Jackson Nakazawa and began reading. This was where it all started.
Jackson, a journalist by profession, begins the book by describing her own battle with Guillain-Barre Syndrome as a young mother of two small children. Her disease involved the immune system attacking the nerves which slowly paralyzed her. After describing her story, she began describing exactly what an autoimmune disease is and how widespread it is. I learned that many diseases that are common today are actually autoimmune diseases. The appendix lists nearly 125 diseases that are known to be autoimmune in nature or are suspected to have an autoimmune component. Here are some that I recognized:
Crohn's disease
Dermatomyositis (that one is mine)
Diabetes, type I
Lupus
Graves' disease
Juvenile arthritis
Multiple Sclerosis
Psoriasis
Pulmonary fibrosis, idiopathic
Raynaud's disease
Rheumatic fever
Rheumatoid arthritis
Scleroderma
Sjodren's syndrome
Ulcerative colitis
Vasculitis
Autism
Chronic Fatigue Syndrome
Lyme disease
Narcolepsy
Restless leg syndrome
As I read over this list, I was shocked. I had barely even known what an autoimmune disease was prior to my own diagnosis. (A fact I'm a little ashamed to admit to it now, considering the fact that my own brother has been dealing with is own autoimmune disease for close to 20 years now.)
As I continued to read, I was amazed by the statistics. I learned that "one in twelve Americans--and one in nine women--will develop an autoimmune disorder of some type. The American Heart Association estimates that by comparison, only one in twenty Americans will have coronary heart disease. Similarly, according to the National Center for Health Statistics, one in fourteen American adults will have cancer at some time in their life. This means that an American is more likely to get an autoimmune disease than either cancer or heart disease" (Jackson, p. xvii). Except me. Apparently, I won the lottery and got the autoimmune disease AND cancer.
As this sunk in I was confused. If so many of these health conditions were related to autoimmunity, why weren't we spending more money on understanding the immune system and how to keep it from trying to kill us? Logic would indicate that this would allow us to help so many more people with a wide variety of health issues, right? Well, it turns out that this may end up being even more critical than ever because I also learned that according to the National Institutes of Health, autoimmune disorders are on the rise. In fact, in the last 40 years, rates of lupus, Multiple Sclerosis, Type I diabetes, and a wide range of of other autoimmune diseases have doubled and tripled in many western countries. Now that one got my attention.
Without rewriting the entire book, I'll just say that I learned that increasingly, scientists agree that the root causes of this growing epidemic is environmental. Our immune system is designed to kill off viruses and bacteria the keep us from getting sick, but it also fights a huge number of other toxins that are polluting our bodies that come directly from our environment. I'm not just talking about toxins that come from tobacco or alcohol. Those would be things that could be easily controlled with a little effort. I'm talking about the literally countless numbers of things that put off toxic chemicals that are slowly being absorbed into our bodies. After being overwhelmed one too many times, our immune systems short circuit and an autoimmune disease is born.
Sounds a little out there, right? You don't think you are exposed to enough toxins to really do any harm? The following passage comes straight off pages 44-45.
For decades, scientists have been studying pollutants in the air, water, and on land. But over the past five years, they have begun studying pollution in people, and the findings are casing many researchers to reevaluate their assumptions about how successfully our bodies interface, with the chemical laden world in which we live. The most telling work detailing what contaminants are entering our bodies and how much toxicity accumulates in our cells and bloodstreams over time comes from a 2003 study by the Mount Sinai School of Medicine in New York City, in collaboration with the Environmental Working Group (EWG), an advocacy organization in Washington D.C. Their findings reveal the "body burden" of environmental chemicals and heavy metals carried by the average American. After testing the blood and urine of nine representative Americans from around the country for 210 substances (sample groups are small as these tests are prohibitively expensive), these scientists discovered that each volunteer carried an average of 91 industrial compounds, pollutants, and other chemicals--including PCBs, commonly used insecticides, dioxin, mercury, cadmium, and benzene, to name just a few. This plethora of chemicals had accumulated in these individuals through the common and minute exposures that we all experience in our daily lives. None of the test participants had worked with chemicals on the job; none had lived near an industrial facility. Yet the average participant had detectable levels of 53 known immune system-suppressing chemicals their bloodstream and in their urine.
In 2003, the Centers for Disease control and Prevention (CDC) in Atlanta conducted a similar study testing blood and urine samples of 2,500 people across the country. The CDC found traces of all 116 chemicals they looked for. Then in 2005, a set of findings emerged that shocked toxicologists around the world. [Are you ready for this one????] Researchers working through two major laboratories found an alarming cocktail of 287 industrial chemicals and pollutants in the fetal cord blood of ten newborn infants from around the country, in samples taken by the American Red Cross. These chemicals included pesticides, phthalates, dioxins, flame retardants, and breakdown chemicals of Teflon, among other chemicals know to damage the immune system. Shortly after, investigators in the Netherlands turned up similar findings: they discovered an array of chemicals commonly found in household cleaners, cosmetics, and furniture in the cord blood of thirty newborns."
This is where I began to get angry. The kind of angry that starts in your gut and begins to radiate outward like an internal heatwave.
And yet, this was just the beginning.
Of course by this time, the librarian girl in me had gone into overdrive and I started pouring over the Internet looking for information on DM and autoimmune diseases. I wanted to know exactly what was happening to my body. I found a book that I purchased called The Autoimmune Epidemic written by Donna Jackson Nakazawa and began reading. This was where it all started.
Jackson, a journalist by profession, begins the book by describing her own battle with Guillain-Barre Syndrome as a young mother of two small children. Her disease involved the immune system attacking the nerves which slowly paralyzed her. After describing her story, she began describing exactly what an autoimmune disease is and how widespread it is. I learned that many diseases that are common today are actually autoimmune diseases. The appendix lists nearly 125 diseases that are known to be autoimmune in nature or are suspected to have an autoimmune component. Here are some that I recognized:
Crohn's disease
Dermatomyositis (that one is mine)
Diabetes, type I
Lupus
Graves' disease
Juvenile arthritis
Multiple Sclerosis
Psoriasis
Pulmonary fibrosis, idiopathic
Raynaud's disease
Rheumatic fever
Rheumatoid arthritis
Scleroderma
Sjodren's syndrome
Ulcerative colitis
Vasculitis
Autism
Chronic Fatigue Syndrome
Lyme disease
Narcolepsy
Restless leg syndrome
As I read over this list, I was shocked. I had barely even known what an autoimmune disease was prior to my own diagnosis. (A fact I'm a little ashamed to admit to it now, considering the fact that my own brother has been dealing with is own autoimmune disease for close to 20 years now.)
As I continued to read, I was amazed by the statistics. I learned that "one in twelve Americans--and one in nine women--will develop an autoimmune disorder of some type. The American Heart Association estimates that by comparison, only one in twenty Americans will have coronary heart disease. Similarly, according to the National Center for Health Statistics, one in fourteen American adults will have cancer at some time in their life. This means that an American is more likely to get an autoimmune disease than either cancer or heart disease" (Jackson, p. xvii). Except me. Apparently, I won the lottery and got the autoimmune disease AND cancer.
As this sunk in I was confused. If so many of these health conditions were related to autoimmunity, why weren't we spending more money on understanding the immune system and how to keep it from trying to kill us? Logic would indicate that this would allow us to help so many more people with a wide variety of health issues, right? Well, it turns out that this may end up being even more critical than ever because I also learned that according to the National Institutes of Health, autoimmune disorders are on the rise. In fact, in the last 40 years, rates of lupus, Multiple Sclerosis, Type I diabetes, and a wide range of of other autoimmune diseases have doubled and tripled in many western countries. Now that one got my attention.
Without rewriting the entire book, I'll just say that I learned that increasingly, scientists agree that the root causes of this growing epidemic is environmental. Our immune system is designed to kill off viruses and bacteria the keep us from getting sick, but it also fights a huge number of other toxins that are polluting our bodies that come directly from our environment. I'm not just talking about toxins that come from tobacco or alcohol. Those would be things that could be easily controlled with a little effort. I'm talking about the literally countless numbers of things that put off toxic chemicals that are slowly being absorbed into our bodies. After being overwhelmed one too many times, our immune systems short circuit and an autoimmune disease is born.
Sounds a little out there, right? You don't think you are exposed to enough toxins to really do any harm? The following passage comes straight off pages 44-45.
For decades, scientists have been studying pollutants in the air, water, and on land. But over the past five years, they have begun studying pollution in people, and the findings are casing many researchers to reevaluate their assumptions about how successfully our bodies interface, with the chemical laden world in which we live. The most telling work detailing what contaminants are entering our bodies and how much toxicity accumulates in our cells and bloodstreams over time comes from a 2003 study by the Mount Sinai School of Medicine in New York City, in collaboration with the Environmental Working Group (EWG), an advocacy organization in Washington D.C. Their findings reveal the "body burden" of environmental chemicals and heavy metals carried by the average American. After testing the blood and urine of nine representative Americans from around the country for 210 substances (sample groups are small as these tests are prohibitively expensive), these scientists discovered that each volunteer carried an average of 91 industrial compounds, pollutants, and other chemicals--including PCBs, commonly used insecticides, dioxin, mercury, cadmium, and benzene, to name just a few. This plethora of chemicals had accumulated in these individuals through the common and minute exposures that we all experience in our daily lives. None of the test participants had worked with chemicals on the job; none had lived near an industrial facility. Yet the average participant had detectable levels of 53 known immune system-suppressing chemicals their bloodstream and in their urine.
In 2003, the Centers for Disease control and Prevention (CDC) in Atlanta conducted a similar study testing blood and urine samples of 2,500 people across the country. The CDC found traces of all 116 chemicals they looked for. Then in 2005, a set of findings emerged that shocked toxicologists around the world. [Are you ready for this one????] Researchers working through two major laboratories found an alarming cocktail of 287 industrial chemicals and pollutants in the fetal cord blood of ten newborn infants from around the country, in samples taken by the American Red Cross. These chemicals included pesticides, phthalates, dioxins, flame retardants, and breakdown chemicals of Teflon, among other chemicals know to damage the immune system. Shortly after, investigators in the Netherlands turned up similar findings: they discovered an array of chemicals commonly found in household cleaners, cosmetics, and furniture in the cord blood of thirty newborns."
This is where I began to get angry. The kind of angry that starts in your gut and begins to radiate outward like an internal heatwave.
And yet, this was just the beginning.
Subscribe to:
Posts (Atom)