Almost done!

The last two drains came out last Friday. I saved a couple of my last Percocets just for the occasion. It hurt like a bugger. I hate to imagine how it would have felt if I hadn't been just a little high.

I am more and more mobile every day. I still have a lot of healing to do, but most of it is superficial. Skin that didn't make it. So, the next, and final step (knock on wood), will be to have a skin graft or two, probably in the next few weeks, to fix that. I'm still pretty swollen too. This is probably a good thing. I was a little freaked out the first time I saw the new girls. They were just...  Let's see. How should I word this... Let's just say they were a lot less subtle than I was expecting. After almost three weeks the swelling has gone down significantly and should go down a little more so by the time it's done, they should be a little closer to what I was used to before the surgery.

Thanks to everyone, particularly my friends and neighbors from Church, for all the love, support, and food! My family has never eaten better.

Should this post be rated???

Just as an FYI, if you are a guy or just a casual acquaintance of mine, the following post may contain more information that you want. Just thought I'd warn you in advance. For myself, I'm beyond caring who knows the details.

Last Friday I had my first follow up with my plastic surgeon.  I had my surgeons do a skin and nipple/areola sparing surgery. This is when they make a small incision, remove all the breast tissue from inside the breast, but leave all the old skin, including the nipple and areola.What is probably more common is for them to remove the nipple and areola and all the breast tissue, but save the skin and at a later date, reconstruct the nipple and areola using skin taken from another part of your body.

Anyway, I probably shouldn't have asked them to save the nipple and areola. I don't think my plastic surgeon and/or my general surgeon had quite the experience or skill level necessary to do it sucessfully because I don't think they have done many of them before. When I was in the hospital, a couple of the nurses said that this was one of the first ones they'd seen. So... shame on me. I should have asked more questions, but oh well it's done. So now, the issue is that the nipple and portions of the skin around it have died because the circulation was compromised during surgery. So I have to goop on this cream three times a day to protect the wound until we know if there is going to be good skin that grows up underneath the dead skin or if I am going to need a skin graft. It's kind of nasty. I'm planning on a skin graft, probably some time in January.

Some good news is that of the four drains I had coming out of my body, we were able to remove two of them. They were longer than I expected. I only thought the tube extended an inch or so inside my body. Turns out, it was closer to about 6 to 8 inches and was curved up by my collar bone and around the top of each breast, ending around the sternum area. Of course, the two she removed were not the ones in the most uncomfortable locations, but it is still nicer to have half as many tubes and containers hanging from me constantly. The other two have just dropped to the maximum output of fluid in a 24 hour period (30 milliliters), so they should come out this Friday at my next appointment. (Unless I can find someone to take them out earlier.) I hate them. I have seriously considered taking them out myself. I watched her do the first two. It didn't look that difficult. Just snip the stitches and pull...  I think I'll feel tons better once they're gone. Not so much like an invalid. I should even be able to drive since I'm off the narcotics too. I'll have to win the battle with Neil on that one first though.

So that is the latest. A little closer to what I hope will be a little calmer life. I've had three crappy Thanksgivings, three crappy Christmases, and three crappy wedding anniversaries. I'm looking forward to being able to celebrate the holidays next year without having to deal with a horrific autoimmune disease, chemotherapy, or having just been taken apart and put back together.

Surgery story

We got to the hospital (IMC) on Wednesday morning at 5:30, bright and early--and then sat in the waiting room for about an hour, waiting for our turn. (I will never understand this.) Once they actually let us back I got in my fashionable little hospital gown and they wheeled me into a little room where I met with everyone that was going to be attending my little party over the next 12 hours: general surgeon, plastic surgeon, anethstesiologist, surgical nurse, and someone else I've forgotten. We all talked about exactly what we were doing so everyone was on the same page. It was probably a good thing since the general surgeon was under the impression that we were only doing a single mastectomy when the plan was to do both.

After we got that clear, my plastic surgeon got out the sharpie and started marking me up. The fun part was when she drew the incision on my belly where they would be removing the tissue to build the new breasts. It went from hip to hip and it took it ALL.  I was quite excited about that part.

The next 12 hours are a little fuzzy. I don't even remember them taking me into the operating room or saying goodbye to Neil. I'll see if I can get Neil to fill in the blanks in a different post. The next thing I remember is someone calling my name and a stabbing pain in my right calf. I vaguely remember  being confused at the location of the pain and yelling, "Why does my leg hurt?" Apparently my leg had been lying on top of a small cord for 12 hours and had developed a huge knot in the calf muscle that was about 4 inches long. That was a little unexpected. So Neil spent the next little while trying to work the knot out of my leg.

The first 24 hours after I came out of surgery were spent in the Intensive Care Unit. They had to carefully monitor the transplanted tissue to make sure that circulation was well established. The plastic surgeon had to connect the dissected blood vessels in the tissue from my belly to the dissected blood vessels in the tissues in my chest. If the circulation wasn't good, then the tissue would die and we'd have to start all over again.

They checked the circulation by monitoring the color of the skin and poking me a lot. When you poke yourself, you normally see a white spot the size of your finger tip where you have pushed the blood out of the veins. After a second, it turns pink as the heart fills the veins with blood again. That shows good circulation. So I was constantly getting poked.

I also had four tubes coming from my body that were draining blood and body fluid from the surgical sites. Two were in my upper abdomen and two were in the lower abdomen. The nurses were constantly emptying these out. The fluids need to get below 30 ml per day before they can be removed.

After 24 hours, they moved me from ICU to a regular hospital room. I was hooked up to an drug pump that would give me a shot of some sort of narcotic once my pain level got too high. Over the last couple of years, I've learned to be a lot more tolerant of pain, but that doesn't mean that I won't do everything I can to avoid it, so I made sure to push that little button every time I thought of it. Fortunately for me, the machine is set so patients can't self administer too much drugs, but I still just thought I should make sure I was getting my money's worth.

I spent four nights in the hospital and as miserable as I was most of the time, I did notice that my pain levels were improving each day. Even that early on. The first time they had to move me to a different bed (when I left the ICU), I thought I was going to die. I had two nurses on either side of me and they just lifted me up in the sheet that I was lying on and slid me over to a different bed. That one hurt. I felt like someone had tried to cut me in half. Well, I guess with an incision from hip to hip, that wasn't too far from the truth. I wasn't feeling much from the chest area. Nerve endings had been severed so there wasn't a whole lot of sensation from that area. It was the tummy tuck that felt like it was going to kill me. But the next time they had to move me from the bed--when I got up to take a shower--it wasn't nearly as bad, so it got a little better each day.

So three more nights in the hospital and I was feeling well enough to come home. We left the hospital around 7 pm on Saturday night. One of my angel neices had taken my kids for the weekend so the house was quiet. It was nice. Neil, the genius that he is, set up the bed we just bought Lily so it bent just like a hospital bed. I had to have both upper body and legs elevated. It was quite the task to figure out how to make me comfortable while wearing a super, hot surgical bra--something that literally held me together from neck to belly button, a binder that was 8 inches wide and cinched around my hips as tight as they could get it to protect the incision on my belly, and 4 tubes protruding from some very inconvenient parts of my body, but he did it. I doped myself up with my old friend, Percocet, and slept like the dead.

Doing the granny shuffle...

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

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!

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.

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 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:

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 doors slammed in their faces and the beauty myth peeled away, the industry’s toxic secrets began to emerge. This scathing investigation peels away less-than-lovely layers to expose an industry in dire need of an extreme makeover. The good news is that while the major multinational companies fight for their right to use hazardous chemicals, entrepreneurs are developing safer non-toxic technologies and building businesses on the values of health, justice and personal empowerment.

 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.

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.

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.

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.

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.

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.

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.

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.

Surgery day: Neil's side of the story.

At first, the morning seemed just like any other. Marie did not seem at all nervous or uneasy about what was about to happen.  She just worked through her morning routine checklist, same as always.

Get up. (Check)

Shower. (Check)

Tell Neil to get up. (Check)

Lay out the kids clothes. (Check)

Tell Neil to hurry because we have to leave in x amount of minutes. (Check)

Get dressed. (Check)

Make sure Neil is still moving. (Check)

Go warm up the car. (Check)

Go back in the house and get Neil. (Check)

Normal day.

We arrived at the Huntsman Hospital only a couple of minutes late.  I always figure in “doctor making you wait time,” so it’s kind of pointless to be early. Besides, really, can they start without her? The valet took the vehicle and swiftly drove away. I love valet parking. For a brief moment I can pretend that I am somebody. 

We made our way to the third floor and the nurse escorted us to a large, open room with smaller, curtained off areas.  We are guided to the corner in front of these very large windows for Marie to change in front of.  Are you kidding me?  Do they charge a peep fee on the other side?  The curtain did not even pull all the way closed and two people were sitting just across the way.  This was all very odd to me but Marie just took it in stride.  She changed and listened to all the instructions well.  I only heard bits and pieces because I was still recovering from an ear infection and was dealing with a decent amount of hearing loss.  I was nervous was going to miss something.

The first person from the medical team was Dr. Neumayer’s assistant Victoria. She came in our small curtained area and explained everything very well.  Then she marked the areas on Marie that they would be doing the procedures on.  Again, as I looked at Marie I saw she was handling it all very well. I am somebody who always worries about the “what ifs,” so I did my best to keep everything inside and maintain a positive front as much as possible.

After talking with Victoria, Marie went to the restroom, but never returned.  I waited and waited and waited.  I considered grabbing a nurse and asking them to check on her because she had been gone now for about twenty minutes or more.  I knew she had to pee in a cup, but was afraid she was freaking out. I wanted a nurse to go find her and tell her everything would be fine. Apparently no one bothered to tell me that they had intercepted her on her way back from the bathroom to take her down to have her wire put in for the surgery.  What a relief to discover she was not passed out on the bathroom floor and that I didn’t actually end up looking like an idiot because I sent nurses off looking for her.

From the curtained area we made our way to a private room with a television.  They seem to have nurses for everything. A new nurse came in and had Marie complete the “what if” paperwork. You know, do you have a living will? What do we do with remains? etc. etc. Okay maybe it wasn’t that drastic, but it was close. Then this nurse put in the IV. After she was done, the anesthesiologist also came in and discussed the “what ifs.” I am thinking this room should now be called the “enter if you dare room.”  Like the old movies.  Dun, dun daahhhhh.

After the anesthesiologist was done, they wheeled her out and that was the last I saw of her until it was all over.  I now was left to my own devices.  They left me standing there to find my way out to the waiting room.  Once in the waiting room, I checked in at the desk. They gave me a card that coincided with a LCD panel where I could watch Marie’s progress as she went from pre-op, to surgery, post-op and so on.  It really is a nice system and somehow makes you feel a little comforted.

I went down to the pharmacy to get her prescription filled. While I was there, my phone made the loud ringing sound it makes when I’ve missed a call.  It must have been ringing the whole time I was standing there. I am sure people were looking at me and thinking, “Are you going to answer it?”  I asked the pharmacist if the number was from the hospital and she said yes.  Of course, my first thought was that they had found something and I now had to make a split decision on what to do.  What would Marie want me to do? Did we talk about it? Man, what if she brought it up in one of those conversations that she went on and on and I was zoned out.  What if I made the wrong decision? I could not live with that.  I really need to listen better. I better get up stairs.

My hands were clammy as I approached the front desk.  I told them that somebody called me, but I missed the call.  I am sure they were thinking, “What a loser. What was so important that he could not take a call about his wife in surgery?” Thankfully they didn’t say that out loud, they just said that it had probably been the operating room and they would call back to surgery to get the message for me. Great. (Yes, please, could you interrupt my wife’s surgery because I could not hear my cell phone ring?)  I am an idiot.  The receptionist handed me the phone and said the nurse wanted to talk to me. A cute, perky voice is on the other side. “Mr. Erickson?” It takes me a moment to register who “Mr. Erickson” is. It’s me, not some old guy I am unfamiliar with. I respond slowly, “y e s.”  She cheerfully gives me the news that the test on the lymph nodes was negative and they were now proceeding with the surgery and it should be about an hour and half. I am only mildly relieved because we still have the rest of the surgery to go.  I need drugs. 

I decided to go up to the “Point.” Its a restaurant on the sixth floor of the hospital. I needed refreshment and a cookie. I brought a movie to watch to pass time because I do not wait well, especially by myself.  Choosing a soda was no problem. Pepsi or Coke. But when it came to a cookie, I crumbled.  Do I want a snickerdoodle? Calming cinnamon and sugar, melt-in-your-mouth? Or maybe an M&M chocolate chip cookie? Fun with a smile? Or, a frosted green sugar cookie? It just exudes spring, happiness and sunshine and makes you want to giggle when you eat it? And finally, the lemon cookie. Bits of lemon drops crushed inside with a tart icing drizzled on top that gives you an instant sugar rush and a hug from your grandma with each bite.  How do I decide? I can’t decide. My mind is not here. Give me all four. If the over the counter drugs won’t do it, the sugar will.

A few minutes later and I’m back in the waiting room, checking out the board. There is a line that runs down the middle of the screen to mark the patients’ progress. I do not think Marie has moved.  I wander about the waiting area. I think I was making a few of the people nervous. A few of them tried to speak to me, but of course I could not hear them.  Looking back, I think they must have assumed that I was anxiously pacing back and forth waiting for the surgery to be over and just wanted to help in some way, but all I was really doing was looking for was a plug, an electrical plug. I needed to plug in my computer, watch a movie, and get my mind off things.  I finally found one, but it was buried in the carpet. I needed that movie, so I got down on all fours and pried off the cover. We have contact.  I sat down and watched the movie. Then the monitor. Then the movie. Then the monitor. Then the movie. The monitor was still saying she was in surgery when I looked up and saw Dr. Neumeyer standing in front of me. I was excited to see her. I quickly closed my computer, and she sat down beside me with a handful of grapes.

She told me everything went well.  She mentioned the lymph nodes again and said that when she removed the breast tissue that it just looked like normal breast tissue. I tried to think of questions to ask but was just more relieved than anything. In the back of my mind, I just kept thinking that everyone so far in my life that has been diagnosed with cancer has died. There has been a number of family and friends that I have had to say goodbye to, but Marie will be the first to live. I will be able to grow old and raise our children with her.  For this one moment I believe the Lord really was listening to my one prayer. 

I asked about recovery and how long it would take but I’m not sure I was really listening to the answer.  Dr. Neumeyer left and sat silently waiting until I could go back to recovery to see Marie. Again my phone beeped loudly, I missed the call.  I walked up to the desk, looked at the receptionist and said, “I really cannot hear my phone.”  She was sweet and said, “Would you like them to call me so that I can come get you?”  I gratefully accepted and she dialed the nurse. They told me Marie was in recovery, but was having a hard time waking up. It would be another 45 minutes and then they would move her back to the to the private room we started in and I would be able to come back.

I told the receptionist that I was going to go to the pharmacy to pick up Marie’s medication since it would be awhile. When I got there the pharmacist handed me Marie’s medication but told me not to give it to her as it was prescribed. She said, “If you give it to her in these doses, it will blow her liver out. We would not want that to happen.” Apparently the prescription was written wrong. She tried to contact the doctor to correct but could not get a hold of her.

When I got back to the waiting room, I was just about to sit down when I saw the receptionist jumping up and down and pointing to me and then the doors. I do not think she would have done well in charades, but I got the message. She was sweet all the same. I went back to find Marie. She was back in the “enter if you dare” room. She was hooked up to an oxygen monitor.  Meagan, my niece, called to check at the same time the nurse walked in. I quickly told her that the nurse was there so I had to go. I am sure I sounded more like, “Get off the damn phone, the nurse is here,” but that was not my intention. 

The nurse explained to me how the oxygen monitor worked and that it had to stay above 90.  When it dropped I had to tell Marie to take deep breaths or even cough.  Marie just wanted to sleep and told the nurse that but the nurse wasn’t buying it.  She wanted her out of there.  I tried to ask questions that I thought Marie would ask. I asked about her questionable prescription. She thought this was concerning.  Marie is so good at asking questions and researching things.  When I had surgery she could tell the doctors and nurses a thing or two. I think some of them had to go back to their stations and look stuff up just to come back and answer her questions.

Well I tried to keep my head. “Marie you need to take some breaths.”  Her response: “I AM BREATHING.”

“Marie just a couple more.”

“WHAT, YOU WANT ME TO GASP FOR BREATH?”

“Marie you are almost there.”

“THAT THING IS NOT WORKING!”

“Okay, I think you are close enough.”

I decided to call Meagan back and just quickly update her. 

“Hi, Meagan, yeah, she is doing okay just a little ornery.”

“I AM NOT ORNERY!”

”Thanks, Meagan. I’ll talk to you later.”

Marie started waking up a little now and was asking questions. The same questions again and again. “How many lymph nodes did they take?” Crap. That is a good question. I forgot to ask that question. “Umm, I do not know.” A few minutes later, “How many lymph nodes did they take?” I answer with same lame response. Just to make me feel worse she asks two more times. I can not remember the other two questions she kept asking over and over. I think it is time to go home.

I wheel her to the front door and out to valet service. Just as I am about to hand the valet my ticket, this elderly women darts by me, holding out hers.  Marie is sitting in a chair almost comatose, slumped over with her coat over her.  Yes, some privileges come with being elderly, but I think she was stretching it a bit. Since Marie was cold, I wheeled her around and back into the building with the assistance of another woman, who was much more pleasant than the first. Maybe she saw what happened and was trying to make up for the first woman. I walked back outside to wait for the next one.  

We got in the car and started pulling out when Marie yells, “YOUR PHONE IS RINGING!” I really could not hear my phone ring. It was driving me crazy. It is the nurse. She was still concerned about the medication and didn’t want to send us home with the wrong label. She asked me to meet her at the pharmacy so that she could fix it.  So I left Marie in the car, in the hospital round about, only semi-conscious as ran up to pharmacy.  There was a different pharmacist so I quickly tried to explain the situation. Her response was, “We cannot take these back.”  I said, “I am not trying to give them back. They just need a new label.” She responded, “But we cannot take back medication once it is dispensed.”  I must not explain myself very well.  At that moment the nurse arrives and clears things up. Then the doctor called and after all that, just said, “Just send him home with the bottle as long as they understand not to take it the way it is written.”  Fine. My wife is comatose in the car. I need to get her home.

On the way home Marie did pretty good, we only pulled over twice because she thought she was going to be sick. The first time I pulled over was quick because she said, “Neil, pull over right now, I am going to be sick.” Once I was at a stop she said, “Why did you stop here? You’re in the middle of the road. You’re going to get hit. You better move, a bus is coming.”  I can’t win. I pull back onto the road and try again a few blocks later.  The second time I guess I was appropriately stopped.

When we got home she made it safely to her bed and slept most of the day. I woke her up to make sure she ate something, but she went right back to sleep. I am so relieved she is doing so well and seems to be handling the pain without any problem.

I would be amiss if I did not thank all our friends and family who have done so much for us.  You brought in food, words of encouragement, love and support. In case we have not already said it, and even if we have, thank you so much. For everything.   Now on to the next adventure…

Have I already mentioned that I love Percocet?

It's the day after and I'm conscious. I'll try to relate yesterday's events to the best of my ability since part of the day is a bit of a fog at best and a complete hole of nothingness at worst, then I'll try to persuade Neil to do a guest post to fill in the holes of the parts I slept through.

We got up bright and early because we needed to be there by 7:30. Our friend Darlene was an angel and came over to spend the day with the kids. When we got there, we went into a staging area of sorts with lots of beds with curtains around them. Mine was right up against the exterior windows. For those of you who don't know where the Huntsman Hospital is, it is right up on the bench of the mountains. The view was beautiful. Anyway, one of the nurses gave me a gown and bag to put my clothes in. I think Neil wanted to ask for a more private area for me to change in (someplace where we weren't right in front of a window and with a privacy curtain that actually closed all the way), but I've long since lost all sense of modesty and just proceeded to strip down and put on the breezy little hospital gown.

When I was done, Dr. Neumayer's surgical nurse, Victoria, came in to go over some paperwork with me, make sure I knew exactly why I was there and what they were going to do, and to mark me up with a sharpie. They wrote a little "yes" on all the places they were going to cut: right breast around where the tumor was, right armpit where they were removing lymph nodes, and left forearm where I had an unusual, unexplained mass that had decreased significantly during chemo. (more about that later.)

After Victoria left, another nurse came in and gave me a little plastic cup for a urine sample. Then she stepped back and just kind of looked at me. I was confused. I finally just said, "You want me to do it right here?"  "Oh, no!" she says, "lets find a restroom." Thank heavens. I guess I do have a little bit of that sense of modesty left.

After I'd given my sample, I had to go to mammography to have the wire inserted. Since there was no tumor left, Dr. Neumayer needed something to guide her to where it had been so they were going to insert a little wire through the breast that went directly to the little metal marker that had been inserted in the middle of the tumor. Then during surgery, Dr. Neumayer would cut out a cylinder of tissue all around the wire. In order to insert the wire, they had to see where the marker was. So they took me in to have another mammogram. They would use the image on the mammogram screen to help them insert the wire where it needed to go. They explained how exactly this was going to work but I think once I realized that it was going to be inserted while I was in compression, I kind of blocked everything else out. It wasn't the wire being shoved in that bothered me. The distressing part of this was that I had to be in compression while they did it. For those of you who have had a mammogram, you know that they are not anywhere near comfortable, but they are bearable because you are only squished as flat as a pancake for a few seconds. Well imagine them putting one of the girls in compression, FULL COMPRESSION, and then leaving her there for five minutes. That's how long they told me it would take. I think she got the message that I was not okay with this when my mouth dropped open and then me saying, just a little louder than I probably should have, "FIVE MINUTES!!!!! ARE YOU KIDDING ME???"

Needless to say, I didn't even feel the wire go in. I was to busy screaming in my head about the fact that my boob was literally being smashed to death. By the time they were done I was amazed that there was anything left for them to cut out. Believe it or not, that was the worst part of the whole day.

Once the wire was in and set, they took me to another little room where Dr. Neumayer injected into the breast a "radiolabeled" fluid. That's a slightly less alarming term than "radioactive," but they mean about the same thing. The reason for this is that they were trying to identify which of the 60 or so lymph nodes under my arm was the "sentinel" lymph node, or the node that the breast drained to first. If there was cancer in any of the nodes, it would be in the sentinel lymph node. In surgery, using a sort of modified geiger counter, they can identify which nodes had most of the radiolabeled fluid and remove them for testing. If there is no cancer in those, they don't need to remove any more. If they do find cancer, then they will usually remove several more to make sure they have gotten out all the nodes that contained any cancer cells. The fluid she injected burned going in. It felt like they were injecting hot sauce, but still, it was cake compared to the above mentioned boob-squishing incident.

After I was done with the boob-squishing and radioactive fluid injecting procedures, they moved me into my own private little room to wait for surgery to be ready for me. It would also be where they wheeled me after I came out of surgery too. I think it was anyway. While I was there, a nurse came in to put in my IV and my anethstesiologists also came in to tell me everything that could happen due to the anethstesia: stroke, heart failure, and a bunch of other things I can't remember. I wonder if they've ever had anyone back out after hearing all that. At least one of them said, "But just so you know, it's more likely that you will die in a car accident once you've left the hospital than it is for any of these things to happen during surgery." I wasn't sure what to say to that.

Then they wheeled me into the operating room and had me move over to the operating table. I remember noticing green lights above me. That was odd. They said they were going to put a breathing tube down my throat, but they must have put it in and taken it out while I was still under because I don't remember any of it.

Once I was all toasty under warm blankets, they put a mask over my face and told me to breathe deeply. The next thing I know, some lady is telling me to wake up and I'm thinking, "Why is she bugging me, doesn't she know I'm about to have surgery?" I just decided to ignore her. Then she says, "I need you to at least open your eyes so I know that you can." I opened one eye, looked at her, and then shut it again. A little while later I hear her talking--I think she must be talking on the phone to Neil--she says, "She's fine. She's been in recovery for about 45 minutes, but we're having a hard time getting her to wake up."  What?!? I'm done? So then I open my eyes and they decide they can wheel me back into my little room where Neil is waiting.

I think I was in that room for a while. I was really tired and just wanted everyone to leave me alone so I could go back to sleep but someone kept telling me to breathe because my oxygen was low. Then she left and neil started telling me to breathe. I just kept saying, "I AM BREATHING!!!!" I just wanted to go back to sleep. It was funny though because I remember thinking, "I don't need to breathe." Usually when you don't breathe you start to feel pain in your chest and gasp for air. I didn't. I didn't feel the need to breathe, but they kept bugging me to breathe so I did every now and then. Anything so they would just let me go back to sleep.

I guess they decided I finally had enough oxygen in my blood because they got me a wheel chair and Neil wheeled me out to the car. I was no longer in the hospital gown though so I must have gotten dressed at some point. My IV was gone too. Don't remember when that happened.

So we drive home, go in the house, I say hi to Darlene and the kids and then just walk into the bedroom, lie down and.... I'm gone.  I vaguely remember Neil coming in to give me drugs and food. I also remember Lily, at some point, pounding on the bedroom door yelling, "MomMA! MomMA!" I heard voices now and then, but that's about it. Next thing I know, it's 8 pm. I think we got home about 3:00 in the afternoon. I had Neil put Lily in bed with me and I slept until 7:30 this morning, only getting up ocassionally to take some more lovely Percocet and to throw Lily's legs off my face. I slept like the dead.

So, anyway, today is Saturday. The cleaning ladies came to clean this morning, my angel neice took Elijah and Lily for an all day play date, and my neighbors brought over dinner last night with dessert. So, my house is clean, quiet, and stocked with brownies.  Life is beautiful.

Oh, I suppose I should also say that they won't have definitive pathologial results until they can do more thorough testing that won't be complete for about another week, but according to the initial tests, they found absolutely no cancer cells anywhere in the breast tissue, none in the lymph nodes, and none in the weird, unexplained mass in my arm.

Complete pathological response was what I was going for. Won't know for sure until testing is finished, but it's definitely looking good.

Tomorrow's the day!

So I got the final word from my surgeon. She took my case to the "Tumor Board." All the doctors get together once a week to discuss particular patients and decide on a plan of action. Apparently they were all okay with the lumpectomy now, bilateral mastectomy later idea so we're on for tomorrow.

We'll be doing a lumpectomy, sentinel node dissection, and removing this little suspicious lump thingy out of my arm while they're in there. There's all sorts of details I need to put down here, but I'm tired and have to get up early for my appointment so I think I'll just post all that later this weekend.

Someone asked me today if I was scared. It hadn't occurred to me to be scared. The only thing that I keep thinking about since my nurse told me that I would be under general anethstesia was that I was really looking forward to a good nap. It's been a while since I've had one of those. This is how clueless I am. Oh well. I guess ignorance isn't always a bad thing.

A change of plans

So my surgeons have been "discussing." Dr. Massey (plastic surgeon) called Dr. Neumayer (breast surgeon) to strategize and then Dr. Neumayer called me to give me another option. After my first consult with Dr. Neumayer, I left planning on having a bilateral mastectomy on the 18th, having tissue expanders inserted and then reconstruction at a later date. After speaking with Dr. Massey the first time, I had decided to have only a unilateral mastectomy on the 18th and then have the other breast removed at the same time that I have reconstruction. That way I would only have to deal with the discomfort of one tissue expander instead of two. But, now they were suggesting that on the 18th I have only a lumpectomy, go through radiation, wait my six months and then meet with Dr. Massey to have both breasts removed and reconstruction in the same surgery. They thought this would be a good way of me avoiding the tissue expanders altogether.

If my reconstruction was being done in the same surgery as the mastectomy, tissue expanders wouldn't be necessary, but since there will be a period of approximately 7 months between surgeries (thanks to radiation), the tissue expanders act as place holders of sorts. Dr. Neumayer does a total skin sparing, nipple sparing mastectomy, so they need to put something in there to replace the breast tissue that was removed until it can be replaced with natural tissue from you butt or gut at the time of reconstruction.

The uncomfortable part is that they have to put the expander underneath the muscle wall (the breast tissue usually rests on top of the muscle wall). Then they slowly inflate the expander, stretching the muscle to form a breast mound. After several weeks of stretching (ouch!) they pull out the expanders and put in implants. But I'm not using implants. I have now finally identified one good thing that has come of being on super doses of steroids for more than a year: I have plenty of my own natural tissue to use so I don't have to put in implants. Plenty. Enough to share even. So, if there are any skinny women out there that are in need of breast reconstruction and are uncomfortable with the idea of implants, I'd be happy to volunteer as a donor. Dr. Massey asked me which area of my body I would like her to take the tissue from. I just told her to take her pick.

So anyway. I think that is the plan. For now anyway. Doing a lumpectomy now and saving everything for later so I can do everything at the same time will save me in a lot of ways. I'll be combining two major surgeries into one. That should cut back on recovery time, time off work, and keep the number of days that I have lifting restrictions to a  minimum. (Not sure how I'm going to survive six plus weeks of a toddler hanging on to my legs screaming "UP PEEES!  UP PEEES!" without being able to pick her up.)

So that's the latest. I think I've figured out what I'm doing. One way or another, I'm having some sort of surgery on Friday. 

I tested negative.

I got the results back from my genetic testing. They were negative. So, this is good for a few different reasons. One, testing postive would have meant that there there was a 50 to 80 percent risk of me developing cancer in the other breast eventually, necessitating a bilateral mastectomy instead of a unilateral. This doesn't actually change much for me since I'm pretty sure I'm going with bilateral anyway. Two, a positive would have meant I had a really high risk of ovarian cancer in the future. If it had been positive, I would have had to have my ovaries removed at some point in the very near future. That I wouldn't care too much about either at this point, other than it would be just one more surgery. Three, and this is the one that I was most interested in, a negative means that my daughter and sisters and neices and maybe even cousins are probably also negative meaning they don't have to worry about having mammograms and breast MRIs at 25 years old.

So, I'm glad I did it. Hopefully it brings a little peace of mind to some of my family members as well.

I have a plastic surgeon. Crazy.

I had a consultation with my plastic surgeon last week. Her name is Marga Massey. I love her. Honestly, it seems like I've been saying that about all my doctors, but I really have been really lucky to find some amazing specialists. Several years ago, when Neil got sick, it seemed like we had to go through at least 5 idiots for every 1 doctor that was even semi-helpful. But then, he was seeing neurologists and neurosurgeons. I'm seeing oncologists and cancer surgeons. I think we learned that Utah is not a great place to be if you have neurological issues, but it's one of the best places to be if you have Cancer.

Anyway, my plastic surgeon does consults in Salt Lake, but her surgeries are done in New Orleans, South Carolina and sometimes Chicago. My consultation with her was over the phone. When making the arrangements, I asked her assistant, "How exactly is that going to work? Doesn't she need to see... stuff?" "Oh yes," she replies, "we're going to need pictures. Neck to knee, front and back." Pictures?!?!  So I took some pictures of myself. Thank heavens for self timers on cameras. I think it is safe to say that was the singlemost depressing moment of my life.... When I was done and had given her the copies I burned onto a CD for her, I deleted them from my camera. Then, just to be safe, I reformatted my memory card. Then, it was all I could do not to run my computer down to the local techie shop and have the entire hard drive wiped, reformatted, and reimaged. But I didn't. However, I will personally be burning that particular computer when we end up replacing it with a new one. . . just to be sure... Bonfire. In the backyard. Seriously.

I met Dr. Massey at a dinner for the Young Survivor Sisters. They have one every year and Dr. Massey sponsors it. She spoke for a few minutes about her work to develop a procedure of transplanting lymph nodes to alleviate symptoms of Lymphedema, which often develops in cancer patients who have undergone mastectomies where they had lymph nodes removed. It's pretty amazing actually.

Just as a little side note, at that same dinner, a woman named Linda Hill spoke. She was named 2010's Wasatch Woman of the Year. She told us her story, beginning with when she was diagnosed with a cancerous tumor in her chest at the age of 19. It was growing around her windpipe, slowly suffocating her to death. She underwent the full gammet of cancer treatment. Since that time, she has continued to battle with various forms of cancer. She has gone through chemotherapy 4 times and has had various surgeries. She has had her thyroid removed, ovaries removed, breasts removed, and colon removed. After explaining all that she stopped and we were all just looking at her in awe at how she survived all that, but she just continued by saying, "And I'm fine!!. You people are walking around with a whole lot of crap that you don't need!" It was a really nice evening and she really gave us a lot of things to think about to keep the whole cancer thing in perspective. She was amazing. If I hadn't felt like a whiney baby about my health lot in life before I heard her speak, I certainly did after. And somehow in the middle of that she managed to have 7 children. Yikes.

Anyway, back to Dr. Massey. She helped me figure a few things out. It helps that she is good friends with Dr. Neumayer, the surgeon that will be doing my mastectomy. She said that they would get together over the phone and discuss the particulars before she got back to me, but generally I think I've decided to do a single mastectomy on the 18th and have a skin expander inserted (more details on that one later). Then by the time I am ready for reconstruction, Dr. Massey will remove the expander in the cancer breast as well as perform a mastectomy on the other breast and reconstruct both breasts at the same time. Still up in the air over whether or not I'll be doing radiation. So that's where I'm at so far.

"No visual residual tumor."

I got the report from my last breast MRI. Here's what it said with my comments inserted:

"No abnormal enhancement is visualized in the right breast. Susceptibility artifact from biopsy clip in the central breast is noted. [A susceptibility artifact is just bright or dark areas of spatial distortion on the MRI image that occur as the result of variations in the magnetic field strength due to the presence of a substance of different magnetic susceptibility. Simply put, the little metal marker clip they inserted in the tumor before all my treatment began was causing some minor distortions in the images in the area directly surrounding it.]  The findings are consistant with response to neoadjuvant [this fun word just means that the chemo came before surgery]chemotherapy, with no visible residual tumor.

That last part is my favorite. Again, that doesn't mean that the Cancer is completely gone on a cellular level (though here's hoping that it is), just that there is no visual trace of it on a MRI. WooHOOO! So now I just need the pathology report after surgery to come back clean and we can skip radiation, move on to reconstruction and be done with this for a while.

I have a consult with my plastic surgeon in a couple of days (now there is something that I never thought I'd have to say) so I'll get a little more information about next steps then.

Mouthwash and genetic testing, an interesting combination.

Two things worthy of note. I had another breast MRI this morning. You remember, the one where you lay on your belly with the girls hanging through these medium-sized holes and they shove you into a tube where you lie with your arms stretched up above your head. This one wasn't so bad as the first one. First of all, this time when I walked into the room, there were two women standing there waiting for me. That was refreshing. There are women that work in Radiology after all! And second, this time I didn't have a needle lodged in my chest. It's not so comfortable to lie on your stomach with one of those.

I should have results on Tuesday. I'm really interested in these, they they will indicate even better than the mammogram I had a few days ago how well the tumor responded to the chemo treatment. I asked my oncologist what would have to happen for me to get out of radiation treatment without increasing my risk of recurring cancer in the years to come. She said that I would need a "complete pathological response." That means that basically, when they do the mastectomy and test all that breast tissue and the lymph nodes they pull, that they are unable to find any Cancer cells left at all anywhere. That's what we're shooting for. That the chemo took care of everything. I'll still need to do the mastectomy, but I'll get out of radiation. It's already looking good considering the fact that the mammogram showed absolutely nothing, but then a mammogram shows nothing on a cellular level and I've learned not to put a lot of faith in those from past experience, so we won't know for sure until surgery.

I also had some genetic testing done yesterday. That was interesting. I had to document a lot of my family history and any incidents of cancer and what age everyone died at. Then they needed a DNA sample from me. I wondered how there were going to take it. I assumed more blood, but then thought, maybe not, maybe they only need a strand of hair like on CSI...,. oh wait, that might be kind of difficult.  They did it differently that I expected. She brought in a little bottle of scope mouthwash and told me to gargle and spit it into a little tube. They needed 20 ml so I had to gargle and spit several times. The last time she told me to run my tongue along my gums and try to get as much of the remaining saliva out of my mouth into the tube to give them as much DNA as possible. Doesn't that paint a pretty picture? She said the mouthwash kills the cells, but the DNA is intact so it still works. Crazy. Oh well, at least I didn't have to get poked. Not that that is really a big deal anymore.

Anyway, I'm doing the genetic testing for two reasons. First, because it will help the other women in my family, and second because it will help me decide whether or not I do a single or bilateral mastectomy.  Here's how it works. The genetic testing will tell me for sure whether or not I am genetically predisposed for breast cancer. They are looking for the BRCA1 and BRCA2 genes, that I would have inherited from my mom or dad. Most likely from my mother since there seem to be more cancer on that side of the family. Thanks mom. Anyway, BRCA1 and BRCA2 are actually mutations of other normal genes. If I have it, then that means that my sisters, daughter and neices all have a 50% chance of having it. The boys do too, but it's not so much an issue for them (does slightly increast the risk of prostate cancer for them, but it is miniscule) except that they can pass it on to their daughters making it more likely for them to develop breast cancer. So if I have it, they will have a little more information and know that they need to be a little more aggressive in their breast cancer screenings. They can even be tested as well to see if they have the gene for sure.

I'm also doing it because of the chance of cancer showing up in the other breast. If I don't have BRCA1 or BRCA2, there is about a 2 percent risk that I will develop a new cancer in the other breast later in life, in which case I may only need to do a single mastectomy. If I do have one of those genes, the chances of a new cancer in the other breast jumps to 50-80%. So if I test positive, they're both coming off for sure. I'm not doing this again. The girls and I have been close for quite a long time now, but I'll have no problem getting rid of them if I have to. They have, after all, tried to kill me. All my loyalty went out the window the day of diagnosis. Besides, I'm going to get new and improved girls. More about that later.