The Hardest Post I’ve Ever Written – GRAPHIC CONTENT!
Let me start by making sure you know I’m not writing this in a sour or bitter tone at all. I just thought it was important at this stage to be very honest about how I’m feeling one week after my 2nd step of reconstruction. I have reduced my risk of cancer from 40% to less than 2%, and if nothing else I have given myself a chance to live. There is nothing more powerful or profound, and I am thankful for that chance. I am thankful to no longer be afraid of my body. But it’s not an easy journey.
Tomorrow will be one week from my implant swap. Almost 9 months to the day from my mastectomy surgery. And one year since my first Baja trip that changed my life on many different levels.
It staggers my mind to think of how much has changed since one year ago, 9 months ago, and even one week ago.
I lost a job that I love, friends that I love, and a body I was at home with. But I have gained a purpose, new friends, and a new outlook on life.
But let me say that I do miss my friends, lost for different reasons along the way. I know sometimes you still read my blog, so know I miss you and still love you.
It took a few days for me to get fully back on my feet. If I had an office job, I could have gone back to work today. I look forward to going back to work soon, I’m feeling a little stale in my brain.
The difference between expanders and implants is impossible to fully describe. I am going to do a video soon, and I think that will do a much better job of showing how dramatically different they are. But I’m not ready to do the video yet, but I do have photos to share.
Breast expanders are very hard. They are odd looking. They make you feel freakish, and if you don’t have a sense of humor you might cry a lot. You learn to joke about poking people and not feeling it, having foobs, titanium boos, frankenboobs, grapefruits, basketballboobs, barbie boobs…really the jokes can be endless.
But the reality is that having breast expanders is difficult. It’s hard on your body, but it’s also hard on your mind, spirit, and sexuality. You lose nerve endings not only in such a large portion of your body (collar bone to mid ribs, armpit to armpit), but also in an erogenous zone. Graphically speaking, your breast are scooped out, burned out, and then replaced with extremely hard plastic balls that you voluntarily go and have enlarged over a period of months. In some cases, like mine, your nipples are removed and discarded like trash.
Just when you’re healed, and have sort of come to terms with your body you get to do it all over again…remove the expanders and place implants. Your implants are called ‘high profile’ so that they stand out like a ‘normal’ breast instead of laying flat to boost breast tissue as in a normal augmentation.
I had a lot of complications after my mastectomy surgery and with the expanders. My complications are documented throughout my blog and videos so I’m not going to go through it again, but I also had it easy compared to some. My friend Teri…that’s a story that will break your heart. So it could have been worse, and I’m thankful that many of my friends had it much easier. All of our stories are a little different.
My implant swap went without a hitch, and I seem to be healing well. I have an appointment for my next surgery after Christmas. I will be having my first session of fat grafting and the first stage of nipple reconstruction. I had not decided fully on nipple reconstruction until a few months ago. As a matter of fact, I was pretty sure I wasn’t going to do it. My breasts were looking so freakish, why make it worse by trying to put a fake but normal nipple on them? But now that I can wear bras again I think that looking at myself and seeing a nipple will help me heal. On the inside.
I know my post right after my implant swap was pretty optimistic (which I always try to be), and I even posted a reply a few days ago that I thought one day no one would be able to tell that I had such a radical surgery. Well, I’m not on drugs anymore and so I would like to say I definately had on rose colored glasses when I wrote that. But let me be fair, I have no idea what things will look like after fat grafting and nipple reconstruction, and Jon keeps telling me to be patient (if you know me, you know this is something I hear all the time because I AM NOT PATIENT!). So we’ll see.
And of course I will show you.
But as of right now I am in some ways thrilled and in other ways totally devistated.
I am thrilled because I’m so soft! My skin feels differently, my body feels like it did before surgery. I did a video where I poked and pounded on my chest to show how hard it was. I could never do that now. Now if I poke, everything moves! My skin is soft. My breasts are soft. I can lay in any position and sleeping doesn’t hurt. 9 months of pain and freakishness are gone. And it is a huge relief.
I am devistated because I still look weird. My plastic surgeon was kind enough to give me their photos from right before my mastectomy surgery and also from right before the removal of the expanders. I have taken photos from 5 days post op of the implant swap (when the expanders were removed and the implants put in). These photos show you how I looked when I was a real girl, how awkward and strange expanders are, and what I’m like right now. I would like to point out that the photo posted a few days ago is no longer accurate, I had a lot of swelling and the size and shape of my breasts has changed a lot. I kind of liked those boobies. But they left me too. 
This is the photo I’m referring to:
1 Day Post Op with Drains
So here we go with the full, unedited version of what a body goes through during mastectomy and reconstruction, at least to this point. I received the photos of my pre surgery body just yesterday and it broke my heart a little bit. I didn’t have any photos, I didn’t take any before surgery for myself. So take a deep breath…
Before Mastectomy
Expanders After 9 Months
Implants 5 Days Post Op
Before Mastectomy
Expanders After 9 Months
Implants 5 Days Post Op
Before Mastectomy
Expanders After 9 Months
Implants 5 Days Post Op
Before Mastectomy
Expanders After 9 Months
Implants 5 Days Post Op
So there you go. Please don’t misunderstand my post, I am thankful, and happy. But I don’t believe there is a person out there that could go through this type of change without some feeling of loss. I know many people find my blog looking for answers and insight about their future and so I want to be honest and open about how I feel and what I’m going through. I couldn’t find the information I needed before surgery and so I created this site and blog and I promised to hold nothing back.
Don’t feel badly for me, I have taken control of my future as much as I can and taken steps to save my life. It’s a good thing. It’s a wonderful choice. But it’s not without difficult moments. But I will take the difficult moments and pain and discomfort to have a longer life, and to hopefully spare myself the pain my mom has gone through for so long. And if you are on this journey too, I wish you the best and offer all of the encouragement I can.
Thank you to all of my readers, the silent ones and the vocal ones. It makes all of the difference in the world to know I’m not alone.
Ode To Boobies
I struggle sometimes with exactly how much to post here on my blog. Do I rant and rave or cry when reconstruction is too much? Do I publicly question my decisions, or moan about the path I’m on? Do I share the silly stories that make me sound like a goof ball? Or do I just try to remain positive, hopeful, and supportive for everyone else?
Originally I just wanted to be positive and hopeful and upbeat, but then I realized that isn’t very fair. There are women out there that look to this blog for information and insight on what they are going to face if they decide to have the same surgeries. So I’ve been a little more open about my bad days, but I’ve still wanted to keep an overall happy tone to my blog. My choices and surgeries have been hard to make, but my path is a good one, and even on my worst days I’m happy with my choice.
With that being said, I’ve thought hard about this and finally decided to share a little bit of the silly side of breast reconstruction.
As you know, last week I had my expanders removed and my implants put in. If you haven’t ever touched an expander (and almost everyone who knows me has because I try to make everyone touch it! you won’t believe it unless you touch it!) I can only tell you that they are really and truly like hard grapefruits stuck to your body. Hard, hard, hard. And awkward. And fake and awful. And I had mine for almost 9 months!
Now, everyone told me that the implants would be great! So soft! Wonderful! I totally didn’t believe anyone (I’m sorry, girls, but I didn’t. I thought you were all crazy!)
The drains completely squick me out, and I try to live in total denial that anything exsists below my collar bone. But I had to finally touch my chest and couldn’t believe it! The tops of my chest used to feel like hard barbie plastic and now it’s soft! And I can feel myself touching my skin!
Now I poke them all the time! Not sexually, ewww, but in wonder that this is my new body! What the…?? Where did my frankenboobs go? How in the WORLD did my doctors manage to take me from a normal woman to a freaky plasticy titanium boobed freak and back to an almost normal woman again? And how did they make it so different in just one day??
If you haven’t gone thru this, you’ll just have to excuse my rant.
Anyway….
So I still have my drains, which makes showering difficult and something better done with a friend. And not sexually, ewwww. So last night I was showering and Jon was politely holding my drains trying not to bump into me or bother me. But he was also looking at me very strangely and I realized that I’m the only one that’s touched them! So I said “You can touch them” and he giggled like a little boy and I said “Not like that” and rolled my eyes. So he poked the tops and his eyes almost popped out of his head and he said “OH MY GOD that’s freaking amazing! How did they do that??” And I said “I don’t know, but now I want to touch them all the time!”
I’m still coming to terms with my new body, and still don’t feel sexually like a woman or at home in my body, but I think that humor helps make each step easier. I feel more like a science experiment than a woman. I look at the photos (that I haven’t posted yet) from the Powder Puff race and can see how much I have aged over the last 9 months. It’s been a hard road, I won’t lie, but it’s been amazing too. And I’ve met so many wonderful new friends that have touched my life that I never would have found if were on a different path. So I’ll take the pain and the fear and pepper it with some bad jokes and a little laughter, and we’ll all get through this together. Maybe in different pieces than we started with, but all in one piece just the same.
Just a Quick Post
I’m not really in great shape at the moment to give you a great update, but I do have one thing I would like to share…
My YouTube channel has had 202,000 views and 149 subscribers.
Thank you so much.
I know I can survive anything because I am not alone.
From a Foggy Mind
Well, I’m home from both California and from my implant swap. There is so much to update, especially about my race, but I’ve been either on the road or in doctor’s offices every day since the race last weekend and now with a foggy head I’m afraid I’ll either ramble more than usual or forget important details about the race. I will do a post soon all about the Powder Puff, and sharing photos, but right now my focus is on my implant swap.
We headed to Denver at 4:30 yesterday morning, my surgery started at 7:30. I sat down with the nurse first, went back over the plan of attack. They had ordered 3 different implant sizes for me…350cc, 375cc, and 400cc. They planned on opening my incisions, removing the dreaded expanders, and then inserting one of each size, sit me up (while asleep) to see which ones looked better and fit properly. I told them to start with the 400s.
Let me explain a little so that I don’t look like a complete bimbo about my chest. Before finding the lump last year I was finally, for the first time in my life, happy with my body. Figures, huh? When I sat down with my plastic surgeon and discussed options I decided to go with expanders instead of the DEIP flap because I didn’t have enough abdominal fat to recreate a breast the same size as what I had. I know that sounds vain, but I didn’t want to go through a 6 month recovery and end up with a very small chest. Going with expanders meant more surgeries, but a faster recovery. With a DEIP flap you can never go bigger, you can’t get larger implants later. But with expanders and implants you face possibly having multiple surgeries over your lifetime because implants fail. Anyway, I liked the size I was before surgery, and didn’t want to end up smaller. I also wouldn’t have minded being bigger. Not like Pam Anderson, just a little rounder to match my round hips. I want to be an hourglass, no longer a pear.
For you guys out there, or women that have lived through breast augmentation, a 400cc implant is very large for augmentation because there is still a breast on top of the implant. For women like me, it’s not augmentation, or a boob job, the implant is the only breast we have. No tissue, no fat, just muscle over the implant to recreate a breast instead of adding to the shape and volume of a natural breast.
Meeting My New Boobies
At my pre-op appointment on Wednesday I asked if I could see the 400cc implant, I had not seen them before. So my nurse retrieved on for me and I was totally bummed out. My surgeon keeps telling me that I want smaller, and I keep telling him I want larger. But by Wednesday we were at the end, no more time or room for a larger implant. Hindsight, I should have talked about it more. But I didn’t, and now it’s over.
The surgery went well. I don’t remember much about waking up. Actually, I’m trying hard to remember anything at all and I cant. Oh, wait, I remember I kept telling them I didn’t want to puke on the 3 hour drive home over the mountains, so they kept giving me anti-nausea meds. I was feeling urpy as soon as I woke up. Jon says I was up and walking and talking coherently, but I don’t remember that at all. I remember stopping just past the Eisenhower tunnel to walk around, trying to prevent another round of blood clots. Best of all, I do remember Jamie standing at the door waiting for me when we got home. He doesn’t like to talk or think about all of this, but he does suck it up and he’s there for me when it counts.
I’m not sure what time I got home, but once I was settled Jon sent out texts to let everyong know I was home and ok. I am trying hard not to take pain meds, or just take them at night. I was pretty loopy yesterday, but haven’t had meds so far today.
It is amazing how much softer my chest is now. It almost feels real. I expected the muscles over the implants to be hard and that the breasts would feel abnormal to the touch because of the muscle. But so far that’s not the case. It’s very strange to go from rock hard back to soft again. It’s a nice feeling.
I do have drains. I hate drains. But these aren’t as bad as last time. Last time they pulled on the expanders and caused unbelievable pain. These aren’t too bad. I did get my hand stuck in the loop of one last night while sleeping. You can bet that woke me right up! But other than that the drains are ok.
I do hurt a lot when I move, so I just try to to move. I would say the pain with drains and expanders was 10+++, with expanders after drains removed about 8, and my pain today with implants and drains is about a 7. But I think I heal better without pain meds, so I’ll just lay low for a few days. My drains get removed on Wednesday.
It is easier than the first surgery, but I am painful, and a little disappointed in the size. I don’t think I’m as large as I was, and not as large as I had hoped. We still have fat grafting to go through, but I don’t see that as adding to the size. But we’ll see. I’ll have that in December.
Compression Bra and Drains
Drain on Right Side, Folding of Implant Can Be Seen As a Lump Under Drain Bulb
1 Day Post Op with Drains
My doctor will be trying to even out the shape and height with fat grafting. You can see one side is still higher than the other. But as my doctor says, breasts are sisters, not twins.
Don’t get me wrong. I’m happy, and relieved that my cancer risk is so low now. I am happy with my choice to do this surgery, and feel like a huge weight has been lifted now that I don’t need MRIs every six months. Maybe I’m a little down because I’m still loaded up with drugs from yesterday. The last 2 months have also been like a whirlwind for me, working 3 jobs and trying to prepare for the Powder Puff. Now the race is over, I’m back in Colorado, and I can’t get back to my retail job until after November 1st. So I’ve gone from full out busy to laying around recovering, and I’m not the laying around type. So be patient with me, I’m sure I’ll be more upbeat soon.
Thanks for all of the supportive emails, texts, and calls. It’s wonderful to know I’m not alone! I’ll check in again soon, right now I’m feeling a nap in my immediate future.
If I Could Be Anywhere…
I was asked a few days ago “If you could be anywhere right now, where would you be?” My first thought was La Ventana Windsports, a little bed and breakfast near La Paz in Baja. But I thought about it a little more, and decided to take it a little further than just one place.
Baja had a huge impact on me, which lead to creating Team Courage. I decided if I could be anywhere, right now, I would be in a
Land Rover Defender traveling the route I followed last year with an expedition group. I would visit Scorpion Bay, and Coco’s Corner, and spend several days traveling that route again. Fish tacos in Bay of LA. Tarantulas by the fire, coyotes howling at night. I would finish it off at La Ventana and spend a few days there trying to figure out how to avoid leaving.
It was the perfect time for that question and the reflection of that trip because I found out today that the trip we took last October will be the first episode in a new series on the Documentary Channel that will air next year. I was able to see the first episode today, and it allowed me to live it all over again in my mind. I can’t wait until the documentary airs so that I can share that trip with everyone. Hopefully our trip to British Columbia will follow closely behind, because that was an inspirational trip as well. I’m not part of that expedition group any longer, but I’m thankful that I was a part of it for the time I was allowed to be involved. And although I’m now out blazing my own Baja trail, I think that first trip will always be a special time for me, and be one of my most treasured memories.
Those expeditions opened so many doors for me, introduced me new friends that I hope last a lifetime, and gave me the courage to take on new adventures. It was a life changing trip, and I hope to bring a piece of the Baja beauty and feel of adventure to my projects with Courage. And of course that trip will always be on my mind during each trip I make in the future down the pennisula of Baja during my races with Team Courage.
My next trip to Baja will be in May of 2011. I am fortunate to be part of NORRA for the next Mexican 1000 as a part of the organization and a time control master again. My race truck, Grace, will be entered in that race, although I won’t be one of the drivers. Even though I won’t be driving, it will be an amazing event to be able to have my truck and team completing my dream of being in a Baja race. And our sponsors and supporters are what has made that dream a possibility.
So, let me think about my answer again. If I could be anywhere, right now, I would be exactly where I am. Looking forward to a future of building a strong race team to help bring awareness to Courage, and helping other women get through their fearful time. Every day brings something new, and the future keeps bringing new opportunities, challenges, adventure, and most of all hope. Why would I want to be anywhere else?
A Note From a 14 Year Old
Today I received a note on YouTube from a 14 year old, and it was so touching to read. It was short and sweet, but touched me because of her age.
I’m 14 and I watched this and was TOTALLY inspired! If I ever have breast cancer I hope I’m as brave as you.
This was a great note, and timely too. For 2011 I’m trying to work with high schools to get younger girls involved in Courage. There was a medical article just published that documented that girls are hitting puberty early now, and when a girl gets her period younger it significantly increases her risk of getting breast cancer regardless of her family history.
Many women tell me that although they are aware of breast cancer because of all of the wonderful foundations that now work hard to bring awareness, it is still thought of as something they don’t have to worry about until they are much older. That’s very deceiving. My plastic surgeon told me that the average age of his patients with breast cancer is 32, and many of the women that contact me are in their 20s and have been already been diagnosed with breast cancer. The medical community is worried that breast cancer will increase in younger women over the next few years, and I want to try to help take some of the fear away from them if I can.
In light of that, it was very refreshing to me to hear from a young girl that is already searching for information and impacted by what she found.
Making a difference is what this is all about, and touching one life, helping one person be less afraid is my goal every day. I am so thankful for her post.
Medical Leave = DENIED!
Just when everything seems to be rolling along perfectly…ok, well, not EVERYTHING, but most things. I found out today that my medical leave of absence was denied!
Very frustrating, and I felt a mass of emotions when I found out. The entire reason I’ve toughed it out at a job I’m not super happy about for the last 2 months is holding out for my insurance and my medical leave for my surgery. My first reaction was to just quit. I can’t take a medical leave for another 5 months! I’m not waiting 5 months for surgery!! But really, what are my choices? If I quit, I have to start all over somewhere else. But 5 months!!?? That’s like torture.
My HR department didn’t have a lot of suggestions for me, but I called our handy 800 number to find out the scoop. It actually doesn’t have anything to do with my insurance, it’s just my leave that’s been denied. I didn’t expect to get paid for it anyway, so it’s not a big deal. But in order to have my third surgery, hopefully in December, I need to keep my job until the end of the year so that I keep my insurance.
So, tomorrow I have to plead with my managers to approve a personal leave of absence and plead with them not to fire me while I’m gone. That shouldn’t be a problem, but I didn’t think the medical leave would be a problem either, so what do I know??
Juggling the worry of the leave and keeping my job on top of getting the transportation of my truck to LA as well as getting registration open for NORRA has me a bit stressed out. I’ve been struggling pretty hard. I’ve been getting some fall out from members of my team, not unjustified, that I haven’t been touching base as much as I should. Yesterday I went through 2 batteries on my cell, I was on the phone so much, but it seems like there’s just not enough hours in a day. When I get stressed I stop getting hungry, and I mostly stopped eating for a few days without meaning to. That made me very tired and depressed, so now I make sure to eat even though I’m not hungry, just to keep fueling my body. I kind of fell apart for a few days, but I’m feeling better now. But it seems like I find a new gray hair everyday, and my dear roomie Ashley keeps following me around yelling “stop frowning!” because when I’m in work mode I tend to frown without realizing it.
The end is in site, just a little over a week until the race is off my mind. I know once I get there I will be able to relax, or at least be stressed in a different way, in a good and excited way, but getting to the race is an adventure in itself.
I’ll make it through this, I must like stress because I’m always filling my life with a huge to-do list, but this has been a challenge. Probably more of a challenge than it will be in the future because I’m learning so much. Learning about putting together a Baja race with NORRA and learning about what it takes to get my own team to a race. There’s so much to do and learn. It is fun, in a weird way, and it is worth it, but I’m looking forward to being able to relax and then maybe get some good rest eventually.
So tomorrow morning I will work for a few hours, and try to get my personal leave approved. Then Thursday I will be going to LA for the day to meet the transport truck as Grace finally arrives for paint and some additional repairs of hidden damage from the Indio wreck. I know it will all work out ok, but getting to ‘ok’ sure can be hard work.
Keep your fingers crossed for me!
A Day For Previvors
This week is National Hereditary Breast & Ovarian Cancer Week, and Wednesday is National Previvor Day.
I’ve seen different ‘definitions’ of what a previvor is…some say it’s a woman that has an increased risk of breast/ovarian cancer that has taken extreme measures (like a preventative mastectomy) to prevent the disease, others say it’s a woman that is known to carry the BRCA1 or BRCA2 genetic mutation. Either way, it’s a wonderful thing that Previvors are being recognized nationally, and hopefully it will bring awareness and hope to women that are uncertain and frightened of their future.
Not everyone is supportive when a Previvor decides to go to extreme measures. Some people, men and women, seem totally offended by the choice I’ve made. Rolling of eyes, anger, even almost outrage are some of the reactions I’ve seen when people find out that I picked surgery BEFORE getting breast cancer. These reactions are slightly humorous to me, and much less offensive to me than when a double mastectomy and reconstruction is compared to breast augmentation. Anyway…
I personally don’t understand how someone can be so mad about something that doesn’t impact their own life, but it happens. I also don’t understand why my choice of surgery would be offensive, especially since I am probably saving my life, at least from breast cancer. But it happens.
I hope that National Previvor Day helps people understand the choices that face some of us. I hope that it brings awareness to what a Previvor is, and makes it easier for women facing these choices to find the information they need to make the choice easier, whatever the best choice is for each of them.
Making A Difference At The Powder Puff
So you probably know by now about Team Courage, what we think of as our “Promotional Department”. The team is our avenue to be out in the public and reaching people, hopefully to make a difference with what women are going through when facing breast cancer as well as raising awareness for our fund raising efforts through Courage Is My Strength.
The team’s first race is on October 9th in Barstow, CA. It’s the Powder Puff race, all women drivers, and the proceeds go to the Cedars Sinai hospital for breast cancer research. It’s a very exciting race, but even more exciting for me because October will be one year since I put together the idea of Team Courage, and to be able to put together a truck and a team within a year and make it to our first race is amazing. I’ve had lots of great help from wonderful people, without a doubt, and it’s so exciting to see this dream come true so quickly.
I have added a DONATE page to the top of this website. Right now we are on a fund drive for the Powder Puff. Our goal is to raise $2500, which will allow us to donate to Cedars Sinai, and even more exciting, pay for 10 mammograms for women that don’t qualify for other funding such as Komen and other breast cancer organizations. There are still women getting turned away from the testing they need, and those are the women we’re trying so hard to help.
Every donation, even $5, helps so much. I know that not everyone can donate, and I understand how hard times are for everyone. If there is anything at all that you can do to help us help others it would be appreciated from the bottom of my heart. We don’t want to just show up at the Powder Puff, we want to be able to make a big difference to other women from our very first event.
Thank you so much for your thoughts and support as we get closer to this monumental day.
A Very Productive Day
Today was spent pretty much all day in the car. I rode down to Malibu with Mike, friend and President of NORRA (National
Off Road Racing Association), so that we could go over rules and regulations for the 2011 Mexican 1000. Mike tends to get distracted easily, so when he’s captive in his car we get a lot more done. We were able to have a conference call with Ken, the Rally Master, and we were able to accomplish all of our goals for the day, so it was a very good day. I’ve included a photo of me with Mike and Ken from the Bay of LA in Baja during last year’s Mexican 1000.
After finishing our work we had a great dinner at Paradise Cove in Malibu. It was wonderful. Reminded me a lot of one of my favorite places on the planet, The Crab Shack on Tybee Island in Georgia. More upscale, but same feel. We had a HUGE appetizer of calimari, which I love. The photo doesn’t do it justice, the glass was over a foot tall. It was heavenly to pig out while listening to the waves.
I don’t think I have the words to express what the ocean means to me. Although I grew up in Georgia, I didn’t get to go to the ocean much, and I really didn’t like Florida beaches very much. I do have a crazy memory, though, of St. Augustine. My biological dad was still alive, so I wasn’t yet four, and we drove down in our big Cadillac and spent a week there. I had a great time playing in the tide pools while my dad watched. I was a daddy’s girl, and loved playing next to the car in the water. I remember I was playing, then looked over my shoulder at the horizon because I heard thunder. I saw a huge bird over the horizon, stretching all the way across the horizon (I know this isn’t possible, but keep reading). I said something to my dad about the huge bird, and he asked me to tell him what I saw. I said that a huge bird was coming over the world, over the ocean with it’s wings spread. He told me that I was seeing a Thunderbird, and that I was very lucky, it only showed itself to a very few people.
That afternoon it started raining. We went to eat at a nice resturant on the beach and it started storming in earnest. We left the resturant only to find a flood. Most cars were stranded in the parking lot, but my dad’s car started right up and we drove out, although I had to keep my feet on the seat because there was water inside the car. I don’t know what I really saw that day, or what it really means, but when I see the ocean I still remember the bird stretched over the horizon, looking at me.
Even though I never liked the Atlantic, I was always facinated with the ocean and sea life. I’ll spare you all of the dull details, because most people find them reeeaaaallly boring, but a few of you out there know how much the ocean means to me. It speaks to my soul, as stupid as that sounds. So finally being at the ocean was a wonderful feeling. It was great to listen to the waves while we talked business. I have a ton of typing to do for NORRA this week, and I’m thinking of going back to that beach to finish my work. We’ll see how that works out, but it would make me very happy. And as the time is really going to speed up now that we are just a few weeks until the race, I probably won’t get a chance to go back to the ocean after this week.
After dinner Mike and I were on the SoCal Off Road Radio show again, and Dave Stall and Alex did a great job of splitting the time almost half and half between NORRA and Team Courage. It was a great show, and the support of Mike, Dave, and Alex is nothing short of amazing.
It was a very exhausting day, but a great one. It’s always a great feeling when I get a lot accomplished, and although I didn’t work on Courage today, I did move forward and cross some items off of my to-do list. Hopefully the week will continue to be powerful and productive! This week needs to bring the end to our tire, spindle, and transportation search for the Powder Puff. Keep your fingers crossed for us!
Smile Until It Hurts
I try really hard to be upbeat and happy as much as I can, but it’s not always my nature. My long time friends know I certainly have a streak of ‘bitch’ in me, but I would like to think that comes with being strong. Maybe I’m just lying to myself, but it gets me through the day so don’t burst my bubble!
So, the most challenging part of my life in California is my job. It’s not a happy place for me. I’m not going to go into why it’s a bad place for me, this isn’t a forum for job bashing, but I’m not happy. At all.
But I AM determined to not make the hours I have to be there awful for everyone else. So I try hard to be nice and smile and be a good person. I guess yesterday was harder than most because I forced a smile so much that I chipped a tooth! I can’t imagine what that smile must have looked at, I’m surprised I didn’t make children cry. To let you know how significant this is, I’m ridiculously proud of my teeth…no cavities, no anything, all white and shiny in there, so to chip a tooth means either tons of force or I’m getting old. Or both.
On the bright side, there were two little girls that really made a difference. One little girl was 6, sitting in a cart with her mom. Her mom was buying about 20 match box cars, and that was all. The little girl was very girly, hair bows, dress, long brown hair and huge blue eyes. Halfway through checking them out the little girl asked for the fire truck. I asked the mom “Are these all for her?” and the mom rolled her eyes and said “She LOVES cars.” I laughed, remembering when I was the same age, trading all of my toys to get match box cars because my parents wouldn’t buy boy things for me. My mom always made me wear a dress and look girly. I loved the little girl immediately. I felt like I was looking at a little girl that had the entire world open to her. She made my day.
The next little girl was about the same age, she was with her grandfather. She was buying a long piece of clip in Barbie hair for little girls. The grandfather explained that she had just donated 2 feet of hair to make cancer wigs. She said she was proud but wanted to have hair again, so he was buying her a little girl version of extensions. I’m sure she had encouragement from her family to do this, but it was still a little breathtaking to see such generosity in a little girl.
So my job isn’t all bad, those are the moments I look for, the brief glow of an unknown friend or a moment of kindness. And they are there, you just have to keep a smile on your face so that you don’t miss them. Even if it hurts.
Twisted Up and Counting Down
Time for an update on my freaky body. Things are going along well, my scars are almost un-noticable. When looking at me without a shirt on the scars are no longer the most obvious problem. You would be more likely to do a double take just because there’s nothing there…no nipples, no color, just barbie boobs without tan marks.
The pain is almost gone. Thanks to exercising and yoga I finally have full range of motion in my arms. The changes in the last month have been the most significant. I can lift heavy things, lay on the floor with my arms stretched over my head, and really have no limitations that I can find. I don’t know why it took me so much longer than my other mastectomy friends, but it took a very long time to be able to feel 100 percent human again.
I have had an expander twist around. I don’t know when it happened, it doesn’t feel any different and never caused any pain. I can tell it has twisted around by the new shape of that breast and by the port. The ports became visable under my skin a few weeks ago when I started doing yoga, and you could see the outline of them on top of each breast. They are less visable now, but can still be felt easily. My right breast port is still on top, and the breast still has a nice shape. My left breast port is now on the side facing the right breast. The shape of that breast is kind of weird, the part that should be the full bottom is now near my armpit, so my breast looks a little strange and full on the side instead of the bottom. But, again, there’s no pain, and I wouldn’t have even noticed if I hadn’t looked down at myself and thought “Hmmm. When did my boob start looking like THAT?”
I can tell my nerve endings are growing. I get a lot of itchiness, and I can feel much more than I could even 2 months ago. Sometimes it’s strange, with my eyes closed I can tell something is touching me somewhere, but I couldn’t tell you which side or the specific point being touched. It’s very bizarre. But my cat scratched me a few weeks ago and I celebrated that I could feel it.
I am now a month from my implant swap. Actually, a little bit more, but close enough. I can’t believe that in about 30 days I will be getting rid of these stupid expanders and getting my nice soft implants. I’m frightened, now that my nerves are feeling again I worry that it will hurt a lot. I also had so many complications, and now I’m feeling so great, I hate to go backwards and be back in bed with drains again. Drains were not my friends. I hated them. I’ll also have to start the injections in my stomach again, to prevent more blood clots. Those were awful. Sigh, it will all be worth it, I just hate being knocked down again. I have a feeling that the next surgery won’t be as bad as the one after…the fat transfer sounds brutal. I’m hoping to have that done in November or December.
The weather here in California is great, hot but nice. The people have been great, and I’m having a pretty good time. No beach time yet, which is a total bummer because I love the ocean, but time just seems to slip away. But I’m doing okay, and I’m happy, and life goes on.
Time for a Makeover
It’s time for a makeover for my blog! EVERYTHING has changed! Please make sure to re-visit, the information for your email feed may no longer work, so if you have subscribed to this blog make sure to visit and sign up again so that you always get our updates.
If you haven’t subscribed, what are you waiting for? I have a new little handy icon at the top right of my blog that says “By Email” this will send you an email as soon as there is a new update!
Titanium Boobs and Intimacy, or Stupid Things People Say, Part Two
If you’re my friend on Facebook you may have already seen this story. Last weekend I was at a concert at the local fair and talking to someone about breast cancer and what I’ve been through this year. It was an interesting conversation, her mom had breast cancer many years ago and it was interesting to hear how things have changed over the years.
This beautiful women looked at me at one point in the conversation and said “You should feel very lucky that your husband can still find you attractive after your surgery. You’re very fortunate he hasn’t left you.”
Wow. What do you say to that?
Now, I will say that Jon would have a million reasons to leave me, with or without titanium boobs. I’m not easy to live with, not even close. Maybe that’s why he lets me leave home so often! I’m a trainwreck, overly ambitious, strong willed, stubborn, and aggressive. But to desire me, or not, because of my surgery?
Anyway, I was floored. So what were my choices, to not have surgery because I may no longer be sexy to men (if I ever was) and wait for cancer?
It did get me thinking about it, and about my body on an intimate level. I still kind of ignore my chest since the surgery, it’s still hard for me to look at. So if it’s hard for me to look at, it makes sense that it would be hard for a man to look at me and feel anything other than curiosity. My blogging friends stay away from the talks of what we go through after this surgery as far as intimacy goes, but maybe that’s not a good idea. Maybe we need to talk about it. Maybe someone reading this feels exactly like the woman at the concert.
Let me address the comment first of all. I would like to think that I wouldn’t be married to someone that would find me unattractive in my current state. I like to think that my brain, courage, and fire would be the real reason for a man to be attracted to me, not because of my breasts. And if Jon married me for my boobs in the first place that would be stupid, they weren’t amazing to begin with. But I still miss them.
Anyway, I agree that if a man is sensitive to medical procedures he may be turned off by the scars and recovery process. If a man is extremely worried about the beauty of his wife I can see that he may be freaked out by a nipple-less woman. But to fall out of love with her?
I know I’m arguing both sides of the arguement when I say this, but if I were single and having to face dating I would be terrified by my new body. Exposing my new body on that level would take incredible amounts of trust, putting my heart right there on the line, and right or wrong I would be waiting to see if my new lover would turn away in disgust, become pre-occupied in the unusual parts of me, or touch me with love and passion. And the moments it would take to find out the answer would be breathtaking and terrifying. I can’t imagine an intimate moment where I would feel more exposed or frightened.
I’m not crazy, I do see the irony in what I just said since I have videos of my body exposed on the internet. But a video explaining medical procedures to ease the fears of others is very different from exposing your body in a moment of intimate sharing.
My ‘beauty’ is not in my breasts! It never was! What makes me the woman I am has nothing to do with what is in my shirt. We are all powerful and wonderful because of what is inside of us, not because of what a man touches. And the most intimate and loving touches are the soft caresses on our souls and hearts, not our breasts. It’s far more intimate to fall asleep close together holding hands than having your breast touched, at least in my mind. And I have never thought I would be less of a woman because I have Frankenstein scars and hard breasts.
Frankly, I think I am more of a woman now.
Please, for those of you going through this, please don’t place the value of yourself as a woman in your lost breasts. You are amazing, no matter the scars and the natural fears. You have a fire within you that burns to be alive, and that radiates throughout your body and shows the world that you are amazing with or without those scars.
The Greatest Birthday Gifts
Happy Friday to you all! I hope September is looking like an amazing month for you, it’s going to be a great month for Courage!
I turned 38 on Wednesday. As a controversial magazine cover so elloquently put it: BFD. I hate birthdays, they are awful for me
Looking For Trouble With Betsy
because I never hear from my family and it’s a reminder of the loss of so much in my life. Don’t feel badly for me, I’m a big girl and can handle it, but September 1st is usually the day I become a sad little girl wallowing in self pity of what I don’t have. I don’t really post about my family here, but it’s pretty dysfunctional and painful to be a part of.
This year was very different. This year I woke to my sweet friend and current roommate’s surprise of putting up big signs and balloons. I worked my day job for a few hours and then was treated to dinner by another amazing friend, Pam, and her family. Her dad, Mike, even called me and sang happy birthday. My son called me without being told! I had incredible and amazing posts on my facebook pages, some that made me a little weepy. My new adopted mom Dawn always makes me feel like one of her family and was so sweet to me all day, even listend to me vent and rant about my never-talked-about family. My mom even called and left a message.
Being in California is…well…I don’t really know how to explain it. I came here for many reasons, not the least was to be in a place removed from my ‘regular’ life to get some things straight in my head. It’s been a year full of highs and lows, and overall the most amazing year of my life. The people I have in my life now, the thought of them just really blows my mind. I could never imagine what was going to happen when I first found my lump, I wouldn’t give all of the ups and downs up for anything.
But the emotional roller coaster has come at a price. I feel a little fragile emotionally, and the thought of the loss or distance of some of my dearest friends can make me weepy in a moment. I’m trying to find out who I am now, my life has changed so much, and to have these people that mean so much to me be so far away emotionally…ugh. How can I be so happy and so heartbroken at the same time? This weekend has been full of smiles and tears, and I guess that’s just the way my life goes these days.
An unexpected and incredible ‘gift’ I received on my birthday is definately noteworthy. Team Courage secured our first big sponsor. Bilstein is going to assist us with getting our truck race ready, and will be sending support to our race to assist in case of trouble at the race. This is amazing, and hopefully will open the door to more sponsorships.
Me, Betsy, and our Saving Grace
I also found out that NORRA (National Off Road Racing Association) will be making some changes to their allowable entries for the 2011 Mexican 1000 and my truck will now be able to race. I won’t be in the vehicle, I will continue to be a time control master for the event, but Brendan and Heather and possibly Betsy (if she’s not driving for someone else) will be driving the truck for the 3 day event. This is doubly wonderful, it will be the anniversary of my public pursuit of the dream of Team Courage. I can’t wait to see the reaction of my new race friends as they see our truck and how far we’ve come since last year.
So, I guess as my life usually flows, there is bitter and there is sweet as I start my journey through my next year of life. Although my heart is so sad with some of my recent losses, my life is wonderful and moving forward and I have so much to be thankful and happy for. I am a lucky lucky girl, and I am so thankful for all of you that have touched my life this year.
Chicken feathers, satin bras, and new photos
Okay, so this entire rant started yesterday. Well, no, it really started 6 1/2 months ago when I had my boobies removed. But since then I find myself a little nostalgic when I see pretty bras and frilly girl things. I also get a little sappy and maybe slightly jealous when I see Rach’s blog and her photos of her nipples. I miss my little friends.
I hope you do know this entire post is completely tongue in cheeck, by the way.
So anyway, yesterday I saw some particularly beautiful frilly things and posted on Facebook “I get jealous of women that can buy pretty bras. Funny, always hated them, now I miss the way they can make you feel pretty. Can’t wait until I can go bra shopping! Guess what’s on my Christmas wish list??” That, in turn lead to a discussion with my friend Heather about bras after our surgeries. She had the same surgery I had.
Heather told me that her surgeon suggested she wear bras, especially ones with underwires. Mine did not. He didn’t say I should not, but it’s never really come up. I tried one on several months ago, and it was so uncomfortable that I never tried again. And, honestly, I was chicken to know what size I am now.
But all with these thoughts lately about lace and underwires and feeling pretty, I decided to dust off one of my old bras and give it shot.
And so I did, and was very surprised! I don’t know if I could wear one all day, but I have been wearing this one for a few hours. It is a 36C.
So, all in all I was very surprised and happy with how I feel and look in my bra. I’m surprised to find that it looks like I’m a little larger now than I was pre-surgery, or at least I have more on the top part of my breasts at this point. This is all due to the expander shape, though, and my surgeon has told me my implants will be smaller than my expanders. Fat will be be transplanted to help sculpt my body after my next surgery. You can tell on the side photo that the shape is still a little bizarre, and that I will probably have those two round scars from the drains for a long time.
But since I’ve been talking to some of my friends about bras, I thought I would share that I sucked it up and beat off my chicken feathers and finally tried on some of my girlie things.
And I’m very surprised about how it looks, and feel kind of silly how a little piece of cloth can make me feel like a lady again.
Thanks Heather! I had a great day too!
Funny, The Things You Talk About After 10 Years
This weekend is my family’s ten year anniversary. We drove to Denver to pick up my son from his summer visit to Minnesota and Georgia, and it was so wonderful to see him and have him home. He’s still not as tall as I am, but it’s probably just a matter of days before he looms over me.
Ohhhh, life.
The radio show tonight was an amazing success. I can’t believe the support Team Courage and Courage Is My Strength is getting, it is so unbelievable to me that people ‘hear’ me, and stand behind me.
Tonight was a special night. Today we passed the 100,000 viewer mark on our YouTube channel. As the radio show finished up, dusk was falling, and I could see the tops of mountains right over the top of my computer screen. A huge full moon was peeking over the top and slowly moving into view. If you’ve never seen the moon here in this part of Colorado, you are missing a show. It’s tremendous!
Anyway, the quiet of my room, the beauty of the moonrise, and blessings from the radio show were all so touching to me. I felt at peace inside.
If I Have Only One Message To Share…
I am so sorry for the long post, please forgive me and try to read thru it! It is written from my heart and means so much.
If I could only share one message, it would be the message of the profound ways my life has been touched and changed in the year since I found the lump in my breast. To put things into perspective:
13 months ago I was working at a horse farm, mucking stalls and driving tractors. I was waiting out a non-compete contract
on the videography/photography business I sold. That month the buyers defaulted on a $40,000 loan I held, I found a lump in my breast, my brother was in prision, my mother was sick, and my husband’s job was going down the toilet.
12 months ago I was reconnected (through FaceBook of all things!) with two of my dearest old friends that were living in Colorado. They offered my husband a job in Glenwood Springs and we moved to make life better.
11 months ago I was hired at Land Rover and almost immediately was able to join in on an incredible adventure to British Columbia. The BC trip featured monumental off roading and the meeting of many great new friends, and two friends that I hope will be in my life for the rest of my days. Token and Hubby B.
8 months ago I went with the same group to Baja, and met Larry Roeseler, and was able to experience a Baja 1000 course. That trip changed my life in so many ways. I don’t have the words to relate to you how my soul was touched, not only by my friends and the racing and the environment. I clearly remember laying awake in my tent, looking at the stars above, listening to the sea pound against the shore. There were coyotes howling, and seals barking, and just the wild wind and sea and animals filling my ears while a fear of cancer raged inside me. I cried a lot on that trip, and my friends were patient, and I was exactly where I wanted to be, but more frightened than ever before.
7 months ago I received help through Susan G Komen to get my diagnostic testing. I had my 1st exam, instead of 1 lump they found 6. They sent me for an ultrasound and mammogram, both which should have taken a total of an hour and ended up taking over 2 hours. My breasts were full of cysts, and ultrasounds and mammograms would be ineffective for the rest of my life. I would need MRIs every 6 months for the rest of my life to make sure I caught any cancerous growth right away. I was scheduled for a MRI the following week. I
found out I did not have cancer, and that I could lower my risks by having double mastectomies. I learned about the lack of funding and insurance coverage for other women needing MRIs to detect cancer. I thought there had to be some way I could take this and make it right. I heard people telling me I was courageous, and strong. I felt that I didn’t have any other choice. I couldn’t find information about what I was going to go through from a woman’s point of view, and so I started Courage Is My Strength. I came up with idea of an off road race team to raise awareness and money for other women. I called Larry to see what he thought, and called another off road friend, Ken, and they both gave me big thumbs up. So I went for it. Ken directed me to NORRA (National Off Road Racing Association) and I volunteered to help with their upcoming Mexican 1000 rally in Baja.
6 1/2 months ago I had surgery. My job was cut due to the economy and I lost my insurance.
4 1/2 months ago I was hired at my new job, far from the administrative work I’ve done for the last 15 years, I’m now wrangling the front end of a Target store, on my feet and lifting and pushing all day. It’s good for me.
3 1/2 months ago I was in Baja, an official time keeper of the Mexican 1000. NORRA became like a family to me, and the
people I met there have touched my life so remarkably. Pam found out about Courage and immediately jumped on to help, introducing me to Betsy-a talented woman that has won Baja 1000-and even announcing at the drivers meeting that I need a truck! I met so many people that have helped me so much, but this post is already too long to name them all! But Pam, Mike, Betsy, Ashley, Bob, Brendan, and Jake have all changed my life and helped make my dreams come true. And none of that would be possible without the support from Ken, Larry, my family, and the friends that stood behind me through the chasing of the dream to make things better for other women going through this.
Today my truck arrived, donated to us through a friend of Bob. It was transported from LA to Scottsdale so that my new family of tech support/pit crew/drivers can get the truck ready. I was worried about getting the truck to AZ, but NORRA has offered to help with the shipping costs. I am entered to race in the Powder Puff race with Betsy in our Team Courage Class 7 truck on October 9th in Barstow, CA. That race is an all women’s race, benefiting breast cancer research. The race will be almost to the week one year since I touched Baja soil the first time, and started on this path.
Today my YouTube channel has reached OVER 90,000 VIEWS, and I have been contacted by so many women that tell me I have taken the fear out of their future surgeries, which makes all of the pain and fear worth it. To be able to cast some light on their fears makes my own so much easier to go through.
Today I sat and cried again, not out of fear, but out of amazement of the wonderful, beautiful people now in my life, working with me to make a difference to others, and working to make this dream happen. It is amazing, and breathtaking, and unbelievable that all of this is happening around me.
I am not an emotional person, if anything I would say that I show very little emotion. Growing up I was mostly only exposed to anger and have little knowledge of how to be a normal, sweet, and loving person. But I try. But I try to seem happy all the time, and keep my emotions inside where they are nice and safe. But seeing the texted image of my truck just after it rolled off the transport truck had me sobbing like a baby, I can’t believe this has happened.
Ken, Larry, Mike, Pam, Bob, Brendan, Jake, Heather, Kelley, Betsy, Jessica, Token, Jon, and Jamie, thank you all for standing behind me, joining me in this crazy idea and dream, and helping me make it happen. I can’t tell you enough, or express it deeply or eloquently enough, how you have made a difference in my life, and touched a part of me that I didn’t really even know I had. Your friendship and support is unbelievable, and although I’m not sure I’m worthy, I am so thankful from the bottom of my heart.
And so, I guess my message would be that when you are the most frightened, and things seem so dark, if you are as incredibly lucky as I am, your friends will be there to shed light on your journey. And may you never be alone.
And to these amazing people: Thank you, thank you, thank you.
A Day of Remembering
Happy Memorial Day to you all, and I hope that you all had a wonderful and enjoyable holiday. I woke up this morning making it a point to take a moment to remember the 3 men that had the biggest impact on my life. Unfortunately, they have all passed away, but my heart is full of them, and they helped mold me into the woman I am today.
Notes From A Stressed Out Mind
Hmmmm, it’s been a crazy week. Ha! I guess it’s really been a crazy life, but let’s just talk about the recent days.
All of a sudden, Courage is growing rapidly. We should reach 50,000 YouTube views by June 1st, and 100,000 views in August. We now sometimes hear from several women a day, and that is the best news of all. I have also found some pretty amazing women myself, and my wheels are turning in my mind about ways to make them part of my Courage Vision.
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