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.
Tuesday, August 9, 2011
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.
Sunday, June 19, 2011
The rest of the story begins.
I finished radiation a couple of weeks ago. It went relatively well. Just a small area under my arm that got red enough to blister and be uncomfortable, but generally, other than being a pain to go up to the hospital every day for 6 weeks, it wasn't that bad. My bilateral mastetomy isn't until the beginning of November. I'm scheduled for November 10th at the Center for Restorative Breast Surgery in New Orleans, Louisianna. So I have a little break in the Cancer treatment until then.
I'm starting to feel a lot better, almost normal even. Except for a constant tingling in my toes, my hands going numb when I sleep and a serious lack of hair, I can almost pretend that the whole cancer thing didn't even happen. Almost.
I've learned a lot in the last couple of years. Most of it I have kept to myself. My family and some of my friends have watched me trying to slowly change my lifestyle as a result of it, but most people are completely unaware. I've written nothing about it on this blog for a couple of reasons. I wasn't sure I knew enough about it to be able to justify my actions, and I wasn't sure how to explain in a way that would make it meaningful and sound legitimate, rather than just the ramblings of a paranoid Cancer survivor.
I served a mission for the Church of Jesus Christ of Latter-day Saints when I was young. I learned how heartbreaking it can be to open your soul to people you love, wanting nothing more than to have them know the things you know, only to have them say something like, "I'm really not that interested" or "That's just not my thing." Like you were trying to sell them a home alarm system or something. As I write this, I wonder how appropriate that analogy is. Certainly, this is nothing that is as soul saving as the gospel. However, it is something that I am passionate about. It is something that makes me want to be a part of the movement to make a change.
So this blog is going to be my feeble little attempt to join with those who are trying to push for a better, safer, healthier future for ourselves, our children, and our children's children. I'm going to tell you the rest of my story, in the hopes that some of you will feel the same shock, anger and drive to do something about it. I'm going to have to go back to the beginning.
I'm starting to feel a lot better, almost normal even. Except for a constant tingling in my toes, my hands going numb when I sleep and a serious lack of hair, I can almost pretend that the whole cancer thing didn't even happen. Almost.
I've learned a lot in the last couple of years. Most of it I have kept to myself. My family and some of my friends have watched me trying to slowly change my lifestyle as a result of it, but most people are completely unaware. I've written nothing about it on this blog for a couple of reasons. I wasn't sure I knew enough about it to be able to justify my actions, and I wasn't sure how to explain in a way that would make it meaningful and sound legitimate, rather than just the ramblings of a paranoid Cancer survivor.
I served a mission for the Church of Jesus Christ of Latter-day Saints when I was young. I learned how heartbreaking it can be to open your soul to people you love, wanting nothing more than to have them know the things you know, only to have them say something like, "I'm really not that interested" or "That's just not my thing." Like you were trying to sell them a home alarm system or something. As I write this, I wonder how appropriate that analogy is. Certainly, this is nothing that is as soul saving as the gospel. However, it is something that I am passionate about. It is something that makes me want to be a part of the movement to make a change.
So this blog is going to be my feeble little attempt to join with those who are trying to push for a better, safer, healthier future for ourselves, our children, and our children's children. I'm going to tell you the rest of my story, in the hopes that some of you will feel the same shock, anger and drive to do something about it. I'm going to have to go back to the beginning.
Wednesday, May 18, 2011
Scarves away!!
Today I decided to retire my scarves. My hair is just a little bit longer than the "fuzzy" stage, but not long enough to comb or do anything with. I was going to wait another few weeks, but this morning I just was so tired of trying to color coordinate my head that I gave up. On the way out the door I told my 5 year old I was going to work without anything on my head. He just looked at me and said, "Mom, I really think you better go back in and get one of your scarves." So I didn't start out with much encouragement, but I decided to ignore him and go bareheaded anyway. The reactions at work were kind of fun. I got everything from those who would look at me funny and then quickly avert their eyes to the ceiling to those that said, "Well, it's better than no hair at all, right?" (I was standing right next to a friend of mine who has had no hair for years when I got that comment.) We all got a good laugh out of that one. It was a good day. So thank you again to all of you who sent me all sorts of hats and scarves so I could be fashionably hairless. Now I get to figure out how to wear them as part of a normal wardrobe.
I have four more radiation sessions to go and I'm done until November 10th when my tummy tuck is scheduled. It's pretty easy to get excited about it when I think about that. The whole bilateral mastectomy thing will be part of that day too, but it's the tummy tuck/butt lift that makes me smile.
I have four more radiation sessions to go and I'm done until November 10th when my tummy tuck is scheduled. It's pretty easy to get excited about it when I think about that. The whole bilateral mastectomy thing will be part of that day too, but it's the tummy tuck/butt lift that makes me smile.
Friday, May 13, 2011
Had an awkward gospel conversation?? Bet I can top it.
So I'm slowly working my way through radiation. My radiation oncologist and I came to an agreement about the number of treatments I have to have. She cut off about 3 or 4 days so I'm happy. Although, the only reason I was trying to limit my radiation exposure was because I was afraid I'd have a Dermatomyositis flare. That hasn't really happened, thank heavens. I guess the doctors were right when they said that the DM was caused by the Cancer and would go away when the Cancer was taken care of. I even tested it. When the DM was at its peak, I couldn't go out in the sun at all. If I did, I had to make sure that I was covered from wrist to ankle and every piece of flesh left exposed had to be covered with a hat, sunglasses, or 3 layers of sunscreen. If not, my skin would explode in a fiery, red rash, my hair would fall out, scalp would itch, and I'd start to lose strength in my legs and arms. So last Saturday, I went out in the yard and worked for 4 or 5 hours, in the sun, in short sleeves and no sunscreen, and NOTHING HAPPENED!!!! Well, except for a sunburn, but nothing else. It was definitely a good day. I don't have to be scared of the sun anymore. (Knock on wood.) Definitely cause to celebrate.
But I have something more interesting to report. My radiation technicians were two women. They were really great and I got really comfortable with them. Then, one day I walked in and there was a guy in there. It kind of caught me off guard. It was just a little awkward, so I didn't say much to him. He tried to do the small talk thing and I was.... well, the word I'd use is "reserved," but I've been told that what I define as "reserved," others call "hostile." I usually didn't give him too much more than one word answers. He was there almost everyday after that so I kind of started getting used to him. After a few days I started answering with TWO words. Well, one day he asked me where I worked and I told him at the LDS Church History Library downtown. I was a little surprised when he started talking about the fact that he had been talking to some missionaries from the LDS Church and he really liked what they had been teaching him, and one day, when he was sick, they even came over and gave him one of those "blessing things" and it was really kind of "cool."
Are you picturing this? I'm lying there half naked on a table with him standing over me with a magic marker, playing connect the dots with my little tattoos, all the while talking about his experiences learning about the gospel. It was a little weird. I couldn't really bring myself to say much in response other than, "Oh, that's really nice." What I was actually thinking in my head was, "I would really love to have this conversation with you if I were fully clothed!!!!!" I had some pretty strange gospel discussions on my mission, but I'm pretty sure this one tops them all.
But I have something more interesting to report. My radiation technicians were two women. They were really great and I got really comfortable with them. Then, one day I walked in and there was a guy in there. It kind of caught me off guard. It was just a little awkward, so I didn't say much to him. He tried to do the small talk thing and I was.... well, the word I'd use is "reserved," but I've been told that what I define as "reserved," others call "hostile." I usually didn't give him too much more than one word answers. He was there almost everyday after that so I kind of started getting used to him. After a few days I started answering with TWO words. Well, one day he asked me where I worked and I told him at the LDS Church History Library downtown. I was a little surprised when he started talking about the fact that he had been talking to some missionaries from the LDS Church and he really liked what they had been teaching him, and one day, when he was sick, they even came over and gave him one of those "blessing things" and it was really kind of "cool."
Are you picturing this? I'm lying there half naked on a table with him standing over me with a magic marker, playing connect the dots with my little tattoos, all the while talking about his experiences learning about the gospel. It was a little weird. I couldn't really bring myself to say much in response other than, "Oh, that's really nice." What I was actually thinking in my head was, "I would really love to have this conversation with you if I were fully clothed!!!!!" I had some pretty strange gospel discussions on my mission, but I'm pretty sure this one tops them all.
Sunday, April 24, 2011
I've been de-ported!!
So I've completed 9 days of radiation. About 20ish to go. I should be done by the end of May. I go every day (Monday through Friday). The treatment itself only takes about 15 minutes so I've been able to do it on my lunch hour. Assuming I don't get stuck at any ridiculously long stoplights (I sat for 4 whole minutes at 700 East one day. Honestly, I was beginning to wonder if the light was malfunctioning) I can make in almost exactly one hour from the time I leave my office to the time I walk back in. It's been nice to not have to use up more sick leave for this.
It's been interesting. For the first week I had the same two radiation technicians. They were both women and were really nice. I got comfortable with them. Every day I drive up to the front door of the hospital, leave my car with one of the valets, and radiation is just inside on the main floor. I check in at the reception desk, walk back to the dressing room, don one of the oh-so-lovely hospital gowns and sit down in the waiting room for approximately 30 seconds before one of my technicians come and get me and walk me back to the radiation room.
I lie down on the table and they proceed to mark me up with markers. The first two days it was with sharpies. The circle all my tatoos and then draw a bunch of other lines that I don't really get the purpose of. The third day I offered to bring in a good supply of washables and they got the hint and have been using washables on me ever since. Then they take a couple minutes to make sure I'm in the right position and they have me lined up exactly how I was the first time I came in. I'm not sure how they do it, but they say they need to have me positioned accurately down to the milliliter. Then they turn of the lights, leave the room and zap me.
It's weird though because I am so much more uncomfortable with the idea of radiation than I was with chemo. There is just something about consenting to lie on a table while someone shoots radioactive waves through my body. I try not to think about it too much while I'm lying there, but it's hard to really concentrate on anything else. The technicians leave the room completely while the machine is working. Right at the entrance there is a big red light that turns on and an alarm sounding buzzer that goes off when I'm actually being radiated to warn everyone to stay away, and yet, there I am, lying on the table, absorbing it all into my body. Yikes. But, at least I don't really seem to be experiencing any side effects yet. I was told to expect extreme fatigue (Okay, that is nothing new. I can handle that one) and one heck of a killer sunburn at the radiation site by the time I was done. So far I haven't gotten any more tired than usual and my skin is showing no sign of irritation at all. That stupid machine better be working because I'm not doing this any longer than I have to.
One more fun little bit of information. I had my port removed. This is the little device they put just under the skin in my chest before I started chemotherapy so they wouldn't have to put an IV in my hand/arm/foot for each infusion. Well, anyway, I had them take it out. When they put it in, it was done in the operating room and though I wasn't completely out, I was pretty loopy once the procedure was over. To remove it was a lot easier, I guess. They just did it right in the clinic. Neil even got to stay in the room. They gave me a local anesthetic, cut me open, separated it from the tissue that had grown around it and pulled it out. I was kind of hoping they would have a mirror on the ceiling so I could watch it, but no such luck. Dang it.
The local burned when it went in, but small price to pay for not being able to feel anything. Or so I thought. I think he started making the incision before the anesthetic had a chance to kick in. I just lied there for a few seconds trying to figure out if what I was feeling was really pain or if it was just pressure. It only took a few seconds though before I figured it out and I said as calmly as possible, "Um, am I supposed to be feeling this?" He quickly gave me some more of the numbing medicine. It was kind of a crazy sensation.
Anyway, after he got down to it, he pulled it out and applied pressure to the area where the catheter entered the vein to give it a minute to clot up. I was grateful for that. Didn't exactly feel like bleeding internally. Though a nice, big bruise would be fun to show people. Then he stitched me up. I asked him if I could keep the port. So they cleaned it up a little and stuck it in a bag for me. I think I'm going to hang it on my rear view mirror. It will help me remember. I don't want to forget any of this. Not a single thing.
It's been interesting. For the first week I had the same two radiation technicians. They were both women and were really nice. I got comfortable with them. Every day I drive up to the front door of the hospital, leave my car with one of the valets, and radiation is just inside on the main floor. I check in at the reception desk, walk back to the dressing room, don one of the oh-so-lovely hospital gowns and sit down in the waiting room for approximately 30 seconds before one of my technicians come and get me and walk me back to the radiation room.
I lie down on the table and they proceed to mark me up with markers. The first two days it was with sharpies. The circle all my tatoos and then draw a bunch of other lines that I don't really get the purpose of. The third day I offered to bring in a good supply of washables and they got the hint and have been using washables on me ever since. Then they take a couple minutes to make sure I'm in the right position and they have me lined up exactly how I was the first time I came in. I'm not sure how they do it, but they say they need to have me positioned accurately down to the milliliter. Then they turn of the lights, leave the room and zap me.
It's weird though because I am so much more uncomfortable with the idea of radiation than I was with chemo. There is just something about consenting to lie on a table while someone shoots radioactive waves through my body. I try not to think about it too much while I'm lying there, but it's hard to really concentrate on anything else. The technicians leave the room completely while the machine is working. Right at the entrance there is a big red light that turns on and an alarm sounding buzzer that goes off when I'm actually being radiated to warn everyone to stay away, and yet, there I am, lying on the table, absorbing it all into my body. Yikes. But, at least I don't really seem to be experiencing any side effects yet. I was told to expect extreme fatigue (Okay, that is nothing new. I can handle that one) and one heck of a killer sunburn at the radiation site by the time I was done. So far I haven't gotten any more tired than usual and my skin is showing no sign of irritation at all. That stupid machine better be working because I'm not doing this any longer than I have to.
One more fun little bit of information. I had my port removed. This is the little device they put just under the skin in my chest before I started chemotherapy so they wouldn't have to put an IV in my hand/arm/foot for each infusion. Well, anyway, I had them take it out. When they put it in, it was done in the operating room and though I wasn't completely out, I was pretty loopy once the procedure was over. To remove it was a lot easier, I guess. They just did it right in the clinic. Neil even got to stay in the room. They gave me a local anesthetic, cut me open, separated it from the tissue that had grown around it and pulled it out. I was kind of hoping they would have a mirror on the ceiling so I could watch it, but no such luck. Dang it.
The local burned when it went in, but small price to pay for not being able to feel anything. Or so I thought. I think he started making the incision before the anesthetic had a chance to kick in. I just lied there for a few seconds trying to figure out if what I was feeling was really pain or if it was just pressure. It only took a few seconds though before I figured it out and I said as calmly as possible, "Um, am I supposed to be feeling this?" He quickly gave me some more of the numbing medicine. It was kind of a crazy sensation.
Anyway, after he got down to it, he pulled it out and applied pressure to the area where the catheter entered the vein to give it a minute to clot up. I was grateful for that. Didn't exactly feel like bleeding internally. Though a nice, big bruise would be fun to show people. Then he stitched me up. I asked him if I could keep the port. So they cleaned it up a little and stuck it in a bag for me. I think I'm going to hang it on my rear view mirror. It will help me remember. I don't want to forget any of this. Not a single thing.
Sunday, April 10, 2011
Complete pathological response
That's what they call it when they believe that the chemotherapy killed all existing cancer cells. That's what I've been shooting for and that's what they think happened. Woohoo!! Of course, they won't say that they know everything is gone, because you never know if there is a single cancer cell still floating around in your system somewhere, but what they did say was that after thorough testing of all the tissues removed during my surgery, they were unable to detect any remaining malignancy. My doctors all seemed pretty thrilled. Apparently that only happens about 10 percent of the time.
So the next step is radiation. I was still really hoping that they would decide that I didn't need it, but after literally several hours of arguing with both my medical and radiology oncologists, I finally agreed to do radiation. However I did tell them that if my dermatomyositis flared again, I would be done with them. I'd rather deal with Cancer than Dermatomyositis in a heartbeat.
My first radiology appointment was just discussing the plan (and me arguing). Nothing too exciting, but the second appointment was somewhat noteworthy. I went into a room that had a big machine that looked similar to a cat scan machine. Like a giant doughnut with a bed through the hole. I'm using the word "bed" very loosely. It was more like a skinny, hard table with a sheet draped over it.
They asked me to lie down and put a pad of some sort beneath my torso. As I lay there, it started to inflate around me and slowly started to harden. They'd created a little mold of my upper body that I would use each time to make sure that I was in the exact same position each time. Next, they needed to determine the area that needed to be radiated. They started marking me up with sharpie markers, putting little x's everywhere. Then they did what I think were several different simulations, recording the settings of the machine. After they were done with all that they took pictures of me from every angle imaginable. They were going to refer to the pictures each time to make sure my hands and arms were positioned the same way, my body was at the same angles, etc.
Last of all, they made the sharpie marks permanent. Yes, I officially have a tattoo. Several actually. They are little blue dots that outline the radiation area. I have a few family members that have tattoos. I won't mention names lest they incur the wrath of grandma, but I've got to tell you, those girls are tough stuff. I thought I'd become pretty tough through all this, but those tattoo pokes hurt like a bugger! And I only had about five. I don't think I could handle what it would take to get an entire image tattooed on your body. Maybe it was the area they were poking, or maybe I was just being a baby, but the needles looked like little thumbtacks. She'd put a little dot of blue ink on me then she stuck me with the tack. Have you ever stepped on a tack? That's what it felt like. Except you didn't step on it. You rolled over in bed and laid on it. Yup. That's what it felt like.
So, that was last Tuesday. This Tuesday I have a dry run. They go through the whole process and make sure all the settings are accurate, but you aren't actually being radiated. I guess you could call it a dress rehearsal of sorts. I think I start the real thing the next day and every week day after that for 6 to 7 1/2 weeks. (My radiation oncologist says 7 1/2. I say 6. We're still arguing about that one.) I'm still not entirely comfortable with the idea of radiation. There are just two many unknowns about how it is going to affect the Dermatomyositis, but I guess we'll find out. As always, I'll keep you posted.
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