Nº. 1 of  26

Boooo Cancer. You suck!

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I did it! Well, Cassie did it the hard bits, I just sat there while she did it. I decided to go pretty short to make the most out of the opportunity I have to be in this film. Talk about a flashback! As soon as I walked out of the salon I had that feeling again. The one that I got when I first started going out without my wig. I felt fragile and strong at the same time. I felt brave walking around with my hair so very short, yet vulnerable because there was nothing to hide behind. When I had the wig on it was almost like I wasn’t me. It was a bit like playing dress up every day. Then when it was gone it was just me and the world. Nowhere to hide. All you can see is face, haha. But you know what? It feels good. And Cassie did such a lovely job. She is such an amazing person and I just love her! Thank you Cassie!! (Try and resist the temptation to snip your own locks for as long as you can, wink wink). 
So, that’s it. I have a 6:30 a.m. call time tomorrow morning and then it’s official. We are making a movie folks. Let’s do this! 

I did it! Well, Cassie did it the hard bits, I just sat there while she did it. I decided to go pretty short to make the most out of the opportunity I have to be in this film. Talk about a flashback! As soon as I walked out of the salon I had that feeling again. The one that I got when I first started going out without my wig. I felt fragile and strong at the same time. I felt brave walking around with my hair so very short, yet vulnerable because there was nothing to hide behind. When I had the wig on it was almost like I wasn’t me. It was a bit like playing dress up every day. Then when it was gone it was just me and the world. Nowhere to hide. All you can see is face, haha. But you know what? It feels good. And Cassie did such a lovely job. She is such an amazing person and I just love her! Thank you Cassie!! (Try and resist the temptation to snip your own locks for as long as you can, wink wink). 

So, that’s it. I have a 6:30 a.m. call time tomorrow morning and then it’s official. We are making a movie folks. Let’s do this! 

Woah. Flashback. I pulled out the ol’ wig today to try and shape it up a little before it’s big screen debut. Wow. Having it on my head again brought back so many emotions. And you know what? Almost every single one of them was good. Even the ones where I was so painfully self conscious that everyone would know I was wearing a wig. Having this wig on again made me proud of the girl in the mirror. My how she’s grown up. What an awfully long way she’s come from the girl putting on a wig last year. I’m proud of her, and I’m proud of me. We’re the same but we’re not. I’m grateful for every day I wore this stupid thing. No matter how sad it might have made me to have to. This wig is a reminder of me being strong. It’s a reminder of the choices I had to make regardless of whether I wanted to make them or not. It’s a reminder that life goes on. A reminder of everything I have to be thankful for in my life. So I guess this wig is more than a wig now. It’s my reminder that sometimes things are hard. Sometimes we have to do things we don’t want to. But we are strong. We are stronger than we realize. And how marvelous to discover that about yourself. How wonderful to surprise yourself with yourself. 

Woah. Flashback. I pulled out the ol’ wig today to try and shape it up a little before it’s big screen debut. Wow. Having it on my head again brought back so many emotions. And you know what? Almost every single one of them was good. Even the ones where I was so painfully self conscious that everyone would know I was wearing a wig. Having this wig on again made me proud of the girl in the mirror. My how she’s grown up. What an awfully long way she’s come from the girl putting on a wig last year. I’m proud of her, and I’m proud of me. We’re the same but we’re not. I’m grateful for every day I wore this stupid thing. No matter how sad it might have made me to have to. This wig is a reminder of me being strong. It’s a reminder of the choices I had to make regardless of whether I wanted to make them or not. It’s a reminder that life goes on. A reminder of everything I have to be thankful for in my life. So I guess this wig is more than a wig now. It’s my reminder that sometimes things are hard. Sometimes we have to do things we don’t want to. But we are strong. We are stronger than we realize. And how marvelous to discover that about yourself. How wonderful to surprise yourself with yourself. 

Customer Satisfaction

Today I went in for a follow up to discuss the results of the bi-lateral mammogram and ultrasound that I got a week or so ago. I feel like my brain is absolute mush lately so I can’t even remember how long ago I went in. Anyhow, I settled into the waiting room, ready for my usual five hour wait and began reading a book. There was the usual chaos. Names slurred over the intercom that no one could decipher. Names called simultaneously from a nurse or doctor which no one could hear. A group of women talking so loudly that no one could hear the names being called who were also in danger of being dragged out of the waiting room by another group of women who had crossed over the threshold of annoyed and stepped into mutinous at the volume at which the women were talking. It’s true, they were insanely loud. 

It was in the midst of this scene that a man came over and politely introduced himself as being with the hospital staff. He asked if any of us would care to fill out a customer satisfaction survey about their visit to the hospital. Four of us locked eyes with one another as our mouths curved up into silent grins. Really? A customer satisfaction survey? I scanned the room one more time before answering. I watched as someone dropped their can of Pepsi on the ground and stared as the brown liquid inside it spilled into a puddle on the floor. I glanced back at the women, still talking at a deafening volume. I looked at the clock on the wall. It was a few hours past when I first sat down and so, smiling, I told the man yes. Yes I would like to fill out a survey. He indicated an area where we were invited to be as candid as possible about our experience at the hospital. The good, the… not so good. I pulled a pen out of my bag and set to work. I checked off the things I was happy about: the nurses, the doctors, their explanation of procedures and such. And then I came to the very generous amount of space reserved for any additional comments and proceeded to tell it like it is. 

Looking around me I noticed that for the first time the overly rambunctious waiting room had small pockets of silence deposited here and there through it’s core as women hunched over clipboards silently filling out their surveys, shaking their heads and mumbling things to themselves as they did so. Much as I probably did myself. I finished up what I had to say and handed my survey back to the man who gave it to me. I have to say, he was very kind and had such a nice presence that I almost hated having him see what I had written. But, it had to be done. Otherwise things will stay the same and that’s no good. It made me feel like less of a jerk commiserating with the other women around me and hearing that they shared my sentiments about the hospital as well. And with that, I headed back to hear the results of my scans. 

No tumors found. Consider me satisfied. 

Hurrah! I was delighted to discover this very morning that more and more companies are jumping on the fragrance free bandwagon. This is excellent news! I am a firm believer that environmental toxins can contribute to tumor growth just as much (if not more in some cases) as a genetic predisposition to the disease. For example, did you know that many of the chemicals they use in common household products are hormonal disruptors? It’s true. These environmental pollutants are capable of imitating the structure of certain human hormones. Specifically estrogen. That’s bad news if you are someone like me who had an estrogen positive breast cancer AND a genetic predisposition to the disease as well. These fake estrogens are found in a number of beauty and household products that most people use every day. 

Last night I was lying on my yoga matt before class when suddenly my head started spinning. I had to sit up and walk over to the window to take in some fresh air I felt so dizzy. The guy who had placed his mat down behind me smelled like he had rubbed fabric softener all over his entire body. Just out of curiosity… why would one want to smell like a sage/jasmine hybrid, or lavender, or a tangerine? Is the concern when washing clothes that they be clean or that they smell artificial? And remember that whatever you are putting on your clothes will end up on your skin. The same with perfumes or cosmetics. Before you put something on your face take a look at the ingredients. Look out for products containing parabens such as methylparaben, polyparaben, isoparaben, and butylparaben. Also keep an eye out for phthalates. 

There are so many wonderful organic products lines that offer fragrance free solutions for pretty much everything you could need. Admittedly I’m a little obsessed. I have fragrance free dish soap (do my dishes really need to smell like a lemon?), fragrance free hand soap, and use fragrance free laundry detergent. It’s good to be mindful of what is going on or near your skin. Your skin is one of your body’s defenses against some of the harsh toxins that are in so much of what people use every day. So take care of yourself! Get educated about what is in what you’re wearing or what you use to wash up with. So you don’t smell like an artificial spring breeze, so what? At least you can rest assured you’re being proactive in protecting your health! 

Here are a couple more links to other great fragrance free products:

http://www.seventhgeneration.com/Free-and-Clear

http://www.johnmasters.com/newbareseries.htm

Speech! Speech!

Whew! It sure took me long enough to finally get back on here and write about the ASTRO conference. It went even better than I could have imagined. I woke up nice and early the day of the conference to go over my speech a few (thousand) more times and make some last minute adjustments. The only thing I was nervous about were the pictures that I had queued up on my Mac to present along with my speech. It seems I am one of the last people on earth who doesn’t know a thing about using Power Point which is what all my fellow presenters were using in their own segment. I decided the best thing to do was to just go with it! After all, I had all these great people on my side since we were all there to talk about something we believe in so strongly, that social media is a wonderful tool not just for cancer patients but for doctors as well. 

When we pulled up to the Miami Convention Center there were signs for the ASTRO conference everywhere. Admittedly my super clever companion had had the genius idea to scope out where the center was the night before so that on the big day we’d have one less thing to worry about or that might make me nervous! It was a relief to hop in the car and head on over. We knew exactly how long it would take to get there and even had time for a wee coffee beforehand! Yay! Walking into the convention center was pretty cool. It made everything seem so official. Suddenly this was real. I was going to be on a stage speaking to people about my blog. Woah. Little did I know when I began this blog the amazing opportunities it might bring my way. This being a shining example at the top of my list! It made me think of how far I have come, and how all of this was possible because I decided to share. Simple as that. And now there I was, getting to share all over again with more people. New people. Now my sharing might mean that they go back to their patients and talk about what they heard at the conference. Maybe they would encourage other cancer patients to express themselves as well and to find a healthy outlet for their emotions! But I digress…

The first stop for me was the Faculty/VIP room where I picked up my super special badge which let me navigate my way through the convention. I have to admit I felt pretty proud slipping it around my neck and heading over to the Speaker Ready room to finally meet the wonderful Dr. Katz at long last! He’s the reason I was at the ASTRO convention to begin with. He’s been following my blog for quite some time and thanks to him and his confidence in me I was able to be a part of such an esteemed panel of experts. It was so great to meet him at last! He was just as nice as I knew he would be and really helped to reassure me that my worry over synching my pictures with my speech would work out fine. Thanks to the delightful Amy Vernon it did! She was one of my fellow presenters and had the presence of mind (and computer know how) to load my pictures onto her computer and make them into a Power Point presentation. Thanks Amy!! The three of us headed over to the room where we would be giving our presentation so that we could scope out the stage. WOW. If it didn’t feel totally real before then it certainly did now!

On stage there was a podium for the moderator, a table with a couple microphones on it for the speakers to comment on questions, and a massive screen where the presentations would be presented and where we could see the results of audience polling which took place after each person had spoken. It was pretty cool! Everyone got a little handheld device that let them plug in their answers and you could immediately see the results on the screen. Hi-tech! Amy spoke first and then it was my turn. I hopped up to the podium and just went for it. It felt so nice to share my blog with people and to talk about what a positive experience it has been to have the blog while I was going through treatment. I got to include some of the wonderful messages I have received from people to show how much support can be found through something as simple as a blog. After I had spoken I took my place beside the other Amy (I love that there were two of us!) and listen as the final two speakers said their part. Dr. Katz wrapped things up for us and I even got to answer a question from the audience.

All in all it was just so cool to be a part of what I see as spreading a very important message. Anything that encourages cancer patients to find an outlet for their emotions is crucial to getting through treatment in my opinion. I am SO grateful to Dr. Katz for believing in me and the blog enough to invite me to be a part of the convention. Thank you SO SO much for this opportunity Matt! I’m thrilled to have met you and the other panelists and to have contributed in my own small way to your very big mission! THANK YOU!!! 

Bienvenido a Miami!

Palm trees! Sunshine! Water! Publix Subs! It’s all here in Miami. And yes, the little piggy in me made sure that her very first stop now that she was back in Florida was to Publix. Yes. Yes I did. I had to get into the deli and get a Publix sub in my belly pronto! And I might have broken my “no sugar” pact I made with myself when I saw bottle upon bottle of sweet tea stretching before my eyes for miles. I didn’t even realize I had grabbed one of them when suddenly I found myself sipping on that sweet nectar of the gods. I think I blacked out, hahaha! Needless to say that is prioritizing in my world. Some come to Miami and head straight for the beach. Me? I head straight for a sub. 

Tomorrow is go time. I’m not gonna lie, I’m a little bit nervous!! I have no idea what to expect! How many people are going to be there? Is my speech any good? What about the pictures I chose to go along with it? Will there be sweet tea? Just kidding. I really hope I do a good job and that I am able to show what a positive impact social media can have not just for patients but for doctors as well. I think there are two people speaking before me and then one after me. That’s good! That way I don’t have the pressure of being the first one to speak and I’m also not the very last which is nice as well. I can listen to the people before me, take some deep breaths, and then relax when it’s all over. I hope I get asked some questions at the end. That’s always my favorite part when I speak at the Ralph Lauren Center. 

I’m just so excited to have this opportunity. This is exactly what I had hoped would come out of having a blog. A chance to share my story with as many people as possible and hopefully to keep having positive experiences as a result. Yeah! Okay, time to look over my speech for the hundredth time. GULP. Fingers crossed!! Send some good speaking vibes my way if you happen to have some lying around! 

Weekend

Oh boy! There’s a lot going on this weekend! I just got back from yoga and already have a nice piping hot green tea (with honey… sigh) to enjoy. Today I’m going to rehearse a little bit with one of the actors in the film. I had a rehearsal yesterday that I think went well. I can’t believe how close we are now to the actual shoot date. We’ve moved it up a day to October 16th. YIKES! That’s just around the corner!! 

I also have to do some MAJOR preparation this weekend for my upcoming part in a seminar on social media in medicine. I was lucky enough to be invited to take part in the annual ASTRO convention, which is the American Society for Radiation Oncology. I will be one of three other speakers who will talk about how social media has impacted the realm of oncology and the positive impact it can have not just for doctors but for patients as well. That’s me! I get to represent the patients perspective! DOUBLE YIKES!! I have my speech all prepared and am going over it just to make sure that I don’t sound like a ding-dong when I get up in front of all these distinguished professionals who are kind enough to humor me as I ramble on about my blog and how wonderful it has been before, during, and after my treatment. I’m even going to have my computer connected to a screen so that I can show them pictures which correspond to what I’m saying. I think that’s the part that makes me the most nervous! Everyone else is going to use PowerPoint which I am clueless about so I’m just hooking up my computer to the screen and queueing up the images I wish to use. Oh boy. Deep breaths. Deeeeeeep breaths. 

As soon as I get back my life has to be all film all the time until we wrap. But for now, it’s time to practice my speech. I keep saying speech but really I like to think of it as my chat. So yes. Time to practice my chat. Oh how I wish there was a Mud shop in Miami so that I might have my precious green tea to steady my nerves when the big day comes! I’ll just have to suck it up and be brave! I’d love to one day go around and talk to people about my experience anyway (cue book editor knocking on my door) so this is a great place to start! Alright. One big sip of green tea and off I go! 

Must. Go. To. Yoga.

I fell off the bandwagon big time the last week or so but got back on it earlier this week and have been feeling good. I’ve been super lazy today about going to yoga but I have GOT to get off my butt and go! I keep checking the class times (as if I don’t already know them by heart) and saying to myself “okay, I can make that one. I have an hour or so to get ready”. Inevitably that hour passes by and I find myself back online looking at the class schedule once again. Alright Amy. You can do this. It’s only an hour. One hour and something so good for your body. Ugh. I ate dinner already and feel all bloated and gross. Okay. Enough complaining! Time to get into my yoga gear and get this show on the road! Goooooooo yoga! Ugh. 

these are what they stick on you when you go in for a mammogram. the small ones go on your… um, nipples (there i said it!!). the longer ones were for where my scars are from surgery. one for where they removed the tumor and one for where they removed my lymph nodes. ta da! 

these are what they stick on you when you go in for a mammogram. the small ones go on your… um, nipples (there i said it!!). the longer ones were for where my scars are from surgery. one for where they removed the tumor and one for where they removed my lymph nodes. ta da! 

Pancakes

Today I went in for a bilateral breast ultrasound and a bilateral mammogram. Those are both part of what will be my now lifetime maintenance routine. Thankfully the mammogram is only once a year because let me tell you something, it is one of the strangest things to have to do to your body. Normally you don’t begin getting mammograms until you are around 40. I was definitely the youngest person in the waiting room. Then again, I’ve pretty much been the youngest person in every waiting room since all of this began! Oh breast cancer, you silly beast you! 

Mammograms are nothing if not incredibly awkward. Basically you stand in front of the machine with your boobs exposed and wait for the technician to come over and literally flatten and clamp your breast to the machine so that she can take a picture of it. It’s actually kind of funny how ridiculous it is. I mean, you’re standing there with your boob pancaked onto a machine trying to act casual like this is just part of your normal morning routine. Wake up, grab tea, squish boob. Done. The technician and I had a good laugh about the absurdity of it all when she had to literally crawl under the machine at one point to come up from underneath me and clamp my boob from below. She took images of both breasts which I’m hoping were fine!

After that I was officially awake! Nothing like having your boob in a vice grip to get the morning started off right. Next came the ultrasound. I don’t mind those one bit because you get to lie down and relax in a dimly lit room while they do the exam. I always have trouble staying awake and I almost dozed off today! The technician took images from both breasts to make sure that everything was okay. We want to keep checking that nothing comes back in the breast where I already had cancer, and to make sure that nothing new develops in my left breast where I have never had cancer. I made the decision even after learning I had the BRCA2 gene that I wanted to keep both my breasts. It was a personal choice and it is what felt right for me. That is something I cannot stress enough when you are going through something like cancer. Cancer makes you make some tough choices. Sometimes much faster than you are ready to make them. It is so important to really listen to your heart and to do what you feel is right for you in the long run. For me personally I was not ready to get a double mastectomy. It was suggested before I began radiation but that’s just not something I felt comfortable with. That is also why these checkups are so very important. I have to make sure that my post-treatment treatment is working. Hopefully the Tamoxifen continues to do it’s job and block those estrogen receptors! From there it’s up to me to stay on top of things. 

It’s rainy here in the city today. I like it. I think I’ll go out and grab a delicious green tea to warm me up. I have to say I’m loving the thought of snuggling up in a sweater and sipping on a nice hot tea while I’m out and about. It’s days like today I feel especially productive. I mean heck, I’ve already had a mammogram AND an ultrasound and the days not over yet! Now that’s what I call gettin’ things done! 

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