Anyway, here's the 15 minute interview...
http://blogs.upstate.edu/healthlinkonair/2015/01/08/a-tale-of-two-boobies-one-year-with-cancer/
A Tale of 2 Boobies |
I was recently interviewed by Linda Cohen, the host of Upstate Radio's Healthlink on Air. We talked about the book I wrote and why I wrote it. Strangely, I wasn't nervous. For some reason, talking about breast cancer comes easy and without fear. Anyway, here's the 15 minute interview... http://blogs.upstate.edu/healthlinkonair/2015/01/08/a-tale-of-two-boobies-one-year-with-cancer/
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Is it possible to have scanxiety even though you aren't having a scan? Yes. I had my follow up appointment today with both the mastectomy doctor and the reconstruction doctor. Today is Friday and I haven't slept a wink all week. I have had nightmares every night. My fear is that they tell me I have skin cancer. If you are wondering why I chose skin cancer to be fearful of, it's because I have had these strange rash type itchy patches on my legs for a few weeks now and they don't go away with anti-fungal cream or cortizone cream or any of the dry skin creams I used during chemo when my skin was at its worst...or so I thought. I never had these strange patches of skin irritation during chemo. Both doctors came in on separate occasions, looked at the rash and said there is a possibility of basal cell which is a type of skin cancer. Tammy, who is my nurse practitioner said it's ringworm. So, I will continue to use the cream and if no improvement in one month, they will biopsy the area. What I was hoping for from the doctors was a clear statement that without a doubt it was just a skin rash that will clear up. But instead, I got a wishy washy maybe its this or that. In my mind, fears are validated. BUT, I will believe that its just ringworm, a bacterial fungus type thing that goes away with the use of the cream. I do have good news... I lost another 10 lbs! I now weigh less than I did when I was first diagnosed back in October 2013! Over 10 lbs less! Now to find a way to sleep without worry for the next 30 days... I had no expectation of writing a blog post today until I checked my email when I woke this morning. A friend wrote me and said something like "be thankful that this year is now behind you". It was a good gratitude reminder. Anyway, I decided it would be a good idea to reflect on this past year in writing and then give it closure.
12 months ago, I came in to the year 2014 with 4 drains protruding out of the sides of my body and in a fog from the pain pills I took regularly to minimize the discomfort from having my boobs cut off. This would be the first of 4 treatments I underwent this past year to remove the cancer from my body. Shortly after the pain pill regimen stopped, the chemotherapy began. All of the cells inside of my body, good and bad, were destroyed. By Valentines Day, the chemo had burned every hair follicle in my body and I was bald. By Memorial Day, I was FAT! Thanks to the steroid regimen that replaced the opiate usage, I was able to get through chemo without a whole lot of puking. The trade-off (and in the world of cancer, there is ALWAYS a trade-off), steroids make you eat – EVERYTHING. I spent my summer with chemo-induced hot flashes, a bald head, a fat body, and a completely wrecked stomach that gets inflamed every time I put anything at all in to my mouth. By Labor Day, I was through radiation and left with some wicked burns on the inside and out. At this point, the most comfort came for me when I could lay on the cold kitchen floor of my house, naked, with the central air blasting. Even t-shirt material hurt my skin from the burns. I started taking the drug Tamoxifen to block the estrogen in my system, which feeds my cancer. One side effect of this drug for me, was hair loss. It doesn’t happen to everyone, only a select few. Wow, I feel special. Another side effect was even greater and more intense hot flashes – as if they could get any worse! Needless to say, screw that drug – it ain’t for me! By Halloween, my hair begins to grow. Yippee! Even though I lived all of my life with thin, pin straight blonde hair, I will take this mop on my head that is thick, brownish/grayish and very curly. It’s better than nothing. Anxious to get my blonde back so that my family members will recognize me again, in early December, I head to the hairdresser. Sadly and strangely, my new hair doesn’t accept the color, therefore I continue to sit with this ash/gray/brown mop. December 9th, I host a book release party in order to personally thank the many friends and supporters who pre-ordered a copy of my book. Well, Syracuse hosts the worst storm of the year on that very same day. Announcements are made that no travel will be allowed. But hey, let’s be positive here - some people dared the white-out conditions and had a few drinks with me so the party wasn’t a total bust. Today is December 31st and I have my first cold/flu in well over a year. I don’t even remember what this feels like. I can’t breathe, my nose is stuffed but running like crazy. My head feels like it’s going to explode as my brain continues to swell from this terrible headache. My body aches, my skin hurts and strangely my jaw feels like it weighs 100 lbs. Yesterday, I knew it was coming so I drank ½ a gallon of OJ and about 2 gallons of water. All that did was make me pee every hour all through the day and night. So, as I sit here and reflect on this past year (with my foggy clogged thinking cap), I am thrilled beyond words to say PISS OFF to 2014! Without question, this was the most physically challenging, embarrassing, self-esteem steeling year of my life. There is no telling when the cancer will return and since I am guaranteed a 50% return rate, I will continue to live like I am dying (Thanks Tim McGraw). If everyone were to live this way, maybe the world would be a better place. In 2015, I don’t want to be rich, I don’t wish for material things, I crave simplicity and a chance to help others. Oh, and if I could help others while cruising the Caribbean, that would be ok too. PS While typing the last paragraph of this post, my phone rang – it was a friend who called to ask questions about cancer because this friend was diagnosed yesterday. Now, how is it possible that as I type the words “A CHANCE TO HELP OTHERS”, my phone rings and it is someone needing my help. If you believe in God, you would call this divine intervention, right? If you don’t believe, I guess you would call it coincidence. Oh, and if you know me personally and are thinking to ask me who this person is – stop thinking. I have been asked to keep it a secret and that I shall do. It is a big deal to tell the world you have cancer. It can only be done when you are ready. Happy New Year! It is simply amazing that you can go to a Christmas party where you know no one and end up having an intensely personal conversation with a stranger. This is what cancer does. Last night, I was one of about 25 or so guests at a fabulously hosted Christmas party in an amazingly decorated house. Between the party, the house, the grounds and the food, even Martha Stewart couldn't have done it better! The party was hosted by my friend Mary Lou who is currently winning her battle against cancer. She was one of 3 people at this party who are in the "short hair club." She has about a 1/2" of hair on her head, I have this strange mop of little hairs on my head, and there was a third woman in attendance who also sported a very short hair cut. I later learned that she decided to keep her hair very short after losing it. Sometimes you attend a party and end up sitting alone all night because you don't know anyone. This was not one of those times. All the strangers at this party were welcoming and talkative. Seems that the homeowners have a wonderful circle of friends. Among their friends, is Sally - the third "short hair club" member. She is an 8 year breast cancer survivor and after learning that I am a one year survivor, she welcomed a lengthy conversation about cancer, our memories (good and bad) and living a healthy lifestyle, including the positive attitude, which she sported with grace. I am in no way, grateful for cancer, but I will say that I truly appreciate the ability to connect on such a personal level with complete strangers. When I look back on this day and that party, it is the people that I will remember and how they made me feel. I felt welcomed, included, honest, real, and fun. Read more:
Breast Cancer blog posts My story on Amazon Connect more: Find me on FACEBOOK Find me on PINTEREST Find me on TWITTER How and Why I Wrote a Book About My Breast Cancer Journey Why did I write a book? First and foremost, I wanted to document my journey. It is important to me that I have a written record of exactly what I went through because I know that once it is just a memory and not so vivid in my brain, I will forget. I recall giving birth to both of my children. I can tell you where I was when I went into labor and exactly what time I pushed them out. But the specifics of the night are lost and exactly what it felt like is no where to be found in my memory bank. Maybe for good reason because I know it hurt like hell. This cancer journey was obviously a different experience but it altered my life so much so that I choose to document the details. Second, I wrote it for all the people in my life who knew I had cancer but were not close enough to know exactly what I went through. These would be the people who kindly sent a message of care and concern when I was first diagnosed but then shortly after, forgot or just didn't know all that I was going through, or what to say or do. Before this experience, I was one of these people. My uncle got cancer and I quickly made a dinner and brought it over to his house. For about a month or two, I called, checked and asked how he was doing. Then... nothing. If cancer hasn't touched you close, you just have no idea how long the battle really is and haven't a clue what to do to help. Yes, it is a lifetime battle, but I am speaking about the immediate treatments to try to remove the cancer. So many people said "I just feel helpless and don't know what to do." So, my feeling is that if people understand what someone with breast cancer goes through, it will help them to understand what they can do to help. Third, I wrote it for my cancer peeps. Either newly diagnosed or in survivor land, if just one person with cancer were to tell me that they could relate to something inside my story, I would feel complete. If someone said I actually helped them in some small way, I could die tomorrow needing nothing else. Why did I choose to include naked photos of my breasts? This is what I wanted to see when I learned that the best course of action for me, would be to remove my breasts. I truly believed that I would get an Anna-Nicole Smith makeover. Little did I know that my reconstructed breasts would not have any nipples, nor would they be soft and mushy like regular breast tissue. It is also important that I create awareness in my community. This is the truth. This is my truth. This is exactly what happened and what it looks like. We live in a visual world these days and nothing says breast cancer like a picture. Why is my one-year story limited to 84 pages? My attention span during this whole process has been extremely limited. I used more data on my phone in one year, than in the past 5 years altogether, staying up late searching for survivor stories. I was not able to read a novel full of words. I needed pictures and then an explanation of the picture. This is what helped me. I could have written 200 pages, but I chose to keep it short and to the point. Why does this story include calendars for each month? After hearing “you have breast cancer”, the next words were “you are going to have a busy year”. No one could give me an exact explanation of what this meant. So, for anyone out there who wants to know exactly how many doctor appointments I had to drive to and why, here it is, in a simple and organized 84 page memoir. Why did I self-publish? Although I wrote a book, which technically makes me an author, I am not. I just had a story that I felt was important to share. When my journey began in October 2013, I never would have thought that a year later I would be holding a printed book that I wrote, documenting my journey. Even six months ago, I never considered writing a book, I just wanted to make it out alive after the cancer treatments. When my last radiation treatment was complete, I looked through all the photos from the past year and decided that I would write my story. In less than a week, it was complete. I wrote this book for the people in my community. I did not write it to make money and I have no desire to send the manuscript to dozens of publishers and wait for a response. There is also the politics of my nudity in the book. Without these photos, the truth cannot be told. I certainly didn’t want anyone telling me that some of them could not be published. I simply wanted to see my story and my truth in book form. How I created my book, step by step. PRINT BOOK: I used DiggyPod to print my book. I researched several companies that printed books with graphics, but found DiggyPod to be a perfect fit. They sent me a free sample and both the photography and binding was impressive so I searched no longer. It is common to write a novel using MS Word, but because of my magazine publishing background and all of the graphics in my book, I used Adobe InDesign. Let me tell you that the publishing world between books and magazines is completely opposite. I had not idea and that probably made life a bit difficult when it came time to upload my book for printing. I am very pleased with their quality and customer service. I would recommend this company to anyone…even without the graphics challenge. DIGITAL BOOK: Publishing to Amazon isn't as easy as you may think. My book is loaded with photos, charts, & calendars and was graphically designed by my girlfriend. When I first uploaded the pdf to Amazon, she would have shit bricks if she saw the disaster that happened to that pdf when it converted to a kindle version. It was a mess. I later learned that Amazon appreciates text book, not graphic books. Thankfully, I found a video that offers step by step instructions on how to take your pdf file that is loaded with graphics and turn it into a file that kindle will recognize. Here is the link to that video: https://www.youtube.com/watch?v=_52G0E3a3Uo So, this completes the “how and why I wrote a book” segment. Next up is the “how to throw a book release party” post, and it will offer a huge tip to party throwers: Try NOT to have a party during the worst snow storm of the year. Wow. I can’t believe that last year on this day, I was waking up in the hospital – boobless and holy hell in a lot of pain. My memories of that hospital stay aren’t very clear but I vividly remember my favorite hospital staff member. It was the morphine pusher that came in every 4 hours. I knew I didn’t want to be in physical pain but I also knew that I wanted my brain to be shut off from reality. Morphine does that quite well. It’s been a full year since that hospital stay and there’s no hiding from reality anymore. I don’t text Lucia anymore and ask her if I really have cancer? Looking back, it really did take many months for the reality of the situation to sink in. Yesterday was my one-year anniversary from the day I had my double mastectomy. I kept this anniversary to myself. I told no one and didn’t post anything about it on my social sites. Although I didn’t feel the need to celebrate it, there are a few very strange things that happened on this day. Yesterday on December 9, 2014: I woke up to flowers and a card from Lucia. The card was a simple and sweet thank you for putting up with the terrible work schedule she endures every year at this time. Random? Coincidence? My Mom and my step Dad took me out to dinner. They had to be out late and decided to eat out. I got a phone call asking to meet them… strange for a Tuesday night. Random? Coincidence? My brother and I do talk very often, but not 3x in one day. He called me three times yesterday! And I got to see my sister today too. All in all, I celebrated the day with flowers, family, and dinner. No one would guess that I didn’t tell a soul about my anniversary date. Happy #cancerversary to me – although really people, there’s nothing happy about it. Other than maybe it’s over and I never have to do it again. When I started my cancer journey in October 2013, never would I have thought that my hair would be such a HUGE issue! It is just over a year later and the cancer is gone, along with my hair. I agree with all the happiness guru's out there that I should just be grateful that the treatments have hopefully killed off the cancer cells that were quickly creating a home inside my body, BUT now I sit here as a completely different person... physically, emotionally,mentally... The path I have walked is my path and I am the person I am, because of this path. I wouldn't change a thing... but damn I want my hair back! I will update this post regularly so you can see the progression of hair growth - after cancer! I know this was something I googled ALOT, a year ago. Take note: I started taking Tamoxifen in August and STOPPED taking it 33 days later. All my hair began falling out again, as well as my eyebrows and eyelashes. This delayed my hair growth A LOT! Click any photo for a larger, slideshow view - with captions. Click here to see the monthly progression of hair growth.
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The CNY Breast Cancer Community Resource Guide includes local organizations, events, products, books and blogs, in an organized magazine style downloadable document for the newly diagnosed and for survivors who want to get involved in the community. Submit your event, blog, book product or organization! The CNY Breast Cancer Community Resource Guide includes local organizations and events, as a resource guide for the newly diagnosed and for survivors who want to get involved in the community. We welcome everyone involved in the CNY breast cancer community to submit relevant information for this guide. We are not a news publication so save the press release for one of our community’s outstanding magazines or newspapers. No, it’s not too late. We continually publish new versions when additions are made. To submit your information, kindly email shelly.straub@outlook.com with advertisement, logo, etc. Please make sure to include who you are and what you do for the breast cancer community here in Central New York, along with any necessary links. Ad should be 8 x 10 in size and all graphics and text should be 300 dpi at full size. This publication is offered as a free download - CLICK HERE. Feel free to contact me with any questions. Thank you! Just over two weeks ago, I began my fitness challenge and started the Focus T25 daily workout program. While I am feeling stronger and have lost a small amount in inches, I have not lost any weight but I know that is because my fitness program does not include any significant change in my eating habits. You can follow my posts and see my progress here, but that isn't the purpose for this post. This post is about the concern for my right arm, the one that is missing the lymph nodes because they were taken during the mastectomy surgery.
It's been 11 months since my mastectomy. All my active treatments for breast cancer are complete and I am on the road to recovery. What better time than now to start a fitness regimen and get back in shape? Well, of everything I have learned and read, exercise is supposed to be the best therapy for the affected limb that lacks all the lymph nodes we were born with. So, why is my arm in so much pain and my range of motion decreasing with every workout? The pain starts in the top of my arm by my shoulder and shoots straight down into the palm of my hand and it feels tight. If I reach for something, the pain is immediate and hurts like hell. The last thing I want to do is go to a doctor appointment. I have had enough of them to last a lifetime. So, of course, I google and play doctor. Sadly, I found information about cording, which can happen to breast cancer patients, especially with lymph node removal and sentinel node biopsies that have been performed. And although exercise is recommended, they say a doctor visit is required before physical activity or more damage could be done and that leaves the arm more susceptible to lymphedema. And what's even more confusing than my arm pain is the fact that I would have to figure out which doctor I am supposed to call for this ailment. Honestly, I have no idea. It's not my oncologist or radiation doctor. Can't be the reconstruction doctor. Possibly the doctor that performed my mastectomy? Possibly the therapist I saw that measured me for my compression sleeve, but I believe I need a doctor to prescribe a visit for that type of appointment. This shit is way confusing! I have to say that it was so much easier when my team of doctors just told me what to do and where to go. For now, I will continue my extremely modified version of Focus T25 and wait a while before calling a doctor to figure this out. My freedom from doctor appointments hasn't lasted long enough. |
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