Post Reconstruction Specialty Bra
If you are facing, or recently have had breast reconstruction, I would like you to take a moment to learn about a product I am 100% behind. This is a wonderful bra called the Thong Bra.
As you may know, I now have symmastia (or synmastia) and will be soon facing my THIRD complete reconstruction surgery. My problems are rare, but I believe that if I had purchased this bra after reconstruction I would not be facing symmastia. I believe that with everything I am.
The Thong Bra basically is a specialty bra that works much better than athletic or underwire bras. I have heard of women being told to wear both types of bras 24 hours a day after reconstruction, basically to keep the breasts from moving while allowing the scar tissue over the breast bone develop to create a nice ‘pocket’ for the implants. The Thong Bra goes one step further and has a firm section that presses down on the breast bone, keeping the muscles and skin where they should be, which reduces the risks of symmastia.
I received my thong bra a little over a week ago, and although I have already developed symmastia, I can tell you that every time I put the bra on I hate to take it off. Wearing the bra is the first time I have been comfortable in months. It relieves the pressure and tightness I feel over my breast bone. It forces my implants that are too close together because of the torn pocket into the proper place and it’s a feeling of ‘ahhhhh’ to have my breasts in the right spot! I LOVE MY THONG BRA!
The bra arrives in a beautiful package that is obviously wrapped with love by the creator, Judy. The package and accompanying letter are adorned with little hearts and special touches that let you know that this is more than just a bra.
Every Thong Bra is handmade. Judy created the Thong Bra after struggling along her own journey, 13 years ago she also experienced bottoming out and symmastia. I thought my journey was tough, but I can’t imagine going through these problems 13 years ago when they were truly unheard of. She went through 3 failed surgeries and countless doctor appointments and created this bra so that you and I don’t have to face the same struggles.
And, again, although I found this bra after developing symmastia, I wish I had found this bra earlier. I believe it would have made all the difference in my recovery, and would have prevented having to go through yet another surgery.
I wore the Thong Bra to my appointment with my surgeon to discuss my symmastia repair, and he suggested that after my next surgery I should wear the Thong Bra continuously during recovery. I would anyway. It’s the best I’ve felt in months.
The Thong Bra isn’t invisible. It’s not going to hide quietly under a tiny tee. But that’s ok. I’m just going to boldly accessorize with scarves. I’d rather wear a scarf here and there than risk going through this again. Recovery seems like forever, but it’s just a few months. I will happily wear my Thong Bra every day!
Check out photos of my Thong Bra below. Want to find out more about this wonderful bra? Visit http://www.thongbra.com/
A Very Serious Update
Along my journey down this road of previvorship, I have posted a few entries that were very hard to write. I can honestly tell you that this one ranks right up there on top. This post is being written with sadness and honestly a lot of fear, but I’m going to take a deep breath and just tell you what’s going on.
This is a post that will be on all of my sites, Courage Is My Strength, Team Courage Racing, and Team Courage Gazelles. Since you are reading this now, you probably know that I had a double mastectomy to prevent breast cancer almost exactly 2 years ago. I have been going through reconstruction since, and due to loss of insurance and several complications a process that should have taken just a few months has stretched into years. But I have been using my story as a way to hopefully light the path for other women fearful of breast reconstruction and have wanted from the bottom of my heart to take some of the fear from those women and hopefully inspire them to chase their dreams at the same time. Courage Is My Strength is about educating by sharing my reconstruction story, and Team Courage is about inspiring women to never give up.
Over the last few months I have guessed that I’ve developed a new problem with my reconstruction. I have been so caught up and excited in my upcoming adventure with my Team Courage Gazelle partner Emme that I have been successfully able to put my worries to the back of my mind. I knew I had developed a fairly rare complication called symmastia, but I really tried not to think about it. But now I have to come to the realization that I can’t ignore this condition any longer.
Basically, to give you the quick version, my pectoral muscle has detached from my breastbone. This is exactly as uncomfortable as it sounds. Since my implants are under that muscle, it means that my implants can cross over the breastbone to the wrong side. They can touch each other and move around in ways they shouldn’t. I could live with that, and have been doing just fine ignoring it for awhile, but recently the muscles have begun to tear more allowing for more movement and causing quite a bit of pain, not to mention it has become physically disfiguring. There are other minor issues going on as well, but the worsening of my symmastia is a problem I can no longer overlook. The surgeries to fix this problem will be painful and I will really have to be diligent in taking care of myself during recovery. I will be pretty limited in my activities, but doing it right will make sure I don’t have to go through this again.
The Ladies of Team Courage! Betsy, Michele, Emme, and Heather
So many of you have been so supportive of Team Courage as well as Courage Is My Strength, and your support means the world to me. I thank you from the bottom of my heart. It is with heavy heart that I have to tell you that I will be most likely looking at several surgeries in 2012, and will not be able to race at all this year. Including Morocco. My dream of racing in 4 countries in 12 months is over for this year.
Please know that this isn’t the end of Team Courage! I have had lengthy discussions with all of my team, and all three girls are being super supportive and ready to make 2012 a great year for all of us! Emme was amazing enough to decide to stay with me and sit this year out instead of replacing me. She not only said that she can’t imagine doing the Gazelle Rally without me, she also wisely pointed out that if we are really going to be representing women facing breast cancer, we need to be honest that this kind of stuff happens, and complications are sometimes part of it. So we may be out for 2012, but we are still making big plans.
The 4 of us will all be together for the NORRA Mexican 1000. I will be there to support my team as well as to offer support to the organization that is like my family, if they should need me. The 4 of us will be together for the Powder Puff as well. Again, even if I can’t race, I will be there to cheer on my girls. I’m so proud to say there will be at least one Team Courage vehicle in both events.
The extra time Emme and I will now have to get to Morocco allows us to really do things right. We can launch a really great marketing and funding campaign and also put together a totally rad story about overcoming some pretty amazing obstacles to make it to Morocco. And we WILL make it to Morocco.
Don’t give up on us! Your support during these difficult months will mean everything to us. Plan on hearing a lot from us as we continue racing to make a difference to women facing breast cancer. We have fund raisers, events, fun times, and even a documentary on the horizon. We will see you soon!
Scheduling Consultations
Wow. Today I spent over 2 hours scheduling consultations for my symmastia repair when I’m in California next month. It was a very
interesting time, especially since I work at a medical clinic. It was very interesting to be worked through the process as a patient instead of as an employee.
I have so far spoken with 7 doctor’s offices, left a message for another, and received a generic “You have reached…”voice mail when I called the 9th. I didn’t leave a message with that one, already not making a very professional impression from the get go.
Of the 7 offices I actually spoke with, only 3 knew what symmastia is, although there are a lot of procedures the doctors I work for do that I don’t know about. Only 1 office had me speak with an assistant that was not only very nice and professional but knowledgeable as well. She gave me so much more information than any other office that her surgeon already stands out in my mind as the surgeon I will be using.
As a patient, I have already learned that this condition is kind of rare. Thankfully, because of this blog, I have heard from several of my BFFs that have been unfortunate to also have been through symmastia repair. It’s a relief to know I’m not alone. But as a patient of an usual complication calling the offices of ‘world renowned’ ‘specialty’ plastic surgeons, you would think the offices would treat you more like a patient and less like cattle. Some of the offices I spoke with had employees that sounded completely out of their mind with boredom and like they were only there for a paycheck. Although I will give them a break since it is the day before Christmas Eve.
I am not excited about these next steps, but I am at least content that I’m finally moving forward again and will be taking the next step soon. My biggest worry, after the thought of the pain of surgery, is that the muscle damage is already too bad for me to be able to do some of the events I have planned for next year. Although my health comes first, I will still be disappointed if I can’t make it to some of my events.
I’m sure I will keep trying to find a way! 
Attack of the Uniboob – What is Symmastia?
So for a crash course in my PBM and reconstruction story, you can read the condensed version here.
After the PBM, expander phase, implant swap, and then new implants and repairs to torn muscles, I was very happy with the result. Despite the pain of the last surgery, I couldn’t believe the difference in the way the new implants looked.
During the first 6 months of recovery I noticed a problem. I have always been fearful of developing ‘uniboob’, I think because during so much of this process the chest muscles are just stretched so tight. I have found it is a common fear with women going through reconstruction. A few months after surgery, I noticed that my skin no longer seemed to be attached to my breast bone and was popping up a bit. I asked my plastic surgeon about it and he agreed, and let me know that it could get worse, but that he wouldn’t recommend repair until/if it became worse because the surgery is painful and doesn’t always work. I had really had enough of pain and couldn’t imagine another surgery.
(Photos and resource links are posted at the end of this blog post)
Since that time I have noticed ‘rippling’ on both sides, when the muscle adheres to the implants and causes a weird ripple effect on the chest. I have also found that the ‘uniboob’ (real medical term is symmastia) is getting worse. The only way to repair either problem is with surgery. If I were facing just mild cases of either of those, I would probably be content to avoid surgery. But now that I have both problems, and they have grown worse over the last few months, I have come to face the fact that I will be facing another repair surgery next year.
I also have ‘dog ears’ on both sides of my left scar. Like rippling, they are difficult to photograph, but it is annoying that I have to wear a bra all of the time, and can be embarrassing because sometimes one of them pops out of my bra and creates a lump on my breast.
The surgery to repair symmastia isn’t fun. They will be stitching the muscle and skin to my breast bone and permanently stitching different places in my pocket to reduce future movement of the implants. I have found some very helpful information from different websites about symmastia. I haven’t spoken to my plastic surgeon about this yet, but will be soon. I have found that this repair isn’t done by a lot of surgeons and may have to travel to have it performed. I have found a doctor in San Diego that does them fairly regularly and also repairs rippling by adding Alloderm instead of just removing the implants and trying again, so I’m thinking I’m going to contact his office for an appointment in January.
I don’t think I’m really upset about this. I can feel a part of me that would love to be depressed, could easily be depressed about this. But as I did research this weekend I saw so many photos of reconstructions that have gone wrong and the scars from breast cancer and treatment and I know that I am still very lucky. Although some can get through this without any complications at all, my complications have been minimal compared to some, and I’m still healthy and haven’t had to face the nightmare of being diagnosed with breast cancer and fighting for my life. It could be so much worse.
So that’s where I’m at in my much-longer-than-expected journey with PBM and reconstruction. I will be contacting surgeons that specialize in the repair of symmastia to get a feel for the plan for the future. I know the repair is pretty intense, so I won’t be planning on doing it until after the Team Courage Gazelle’s event in Morocco (The Gazelle Rally) and the Team Courage Racing event in Baja (The NORRA Mexican 1000). That puts it about June. I’m also hoping to host a breast cancer survivor/previvor retreat in June, so make sure you’re signed up for blog updates so you can sign up before the spots are filled!
I have a smile on my face and a uniboob under my shirt, and life is good. One more step forward, and everything happens for a reason.
“The caterpillar thought her life was over, and then she became a butterfly.
Here is another site for more detailed photos. Again, not a recommendation, only information.
Here are photos of my different stages, including rippling, dog ears, and symmastia.
- Before Mastectomy
- Oct 2010 5 days post op 1st implant swap
- Nov 2010 – 1st Implant and Alloderm Failure
- Nov 2011 Almost One Year After After 2nd Implant Swap and Reconstruction Repair
- Jan 2011 Two and a half weeks after reconstruction repair
- Nov 2011 Almost One Year After 2nd Implant Swap and Reconstruction Repair
- Nov 2011 Rippling and Dog Ears
- Nov 2011 Almost One Year after 2nd Implant Swap and Reconstruction Repair, Symmastia
- Nov 2011 Almost One Year After 2nd Implant Swap and Reconstruction Repair – Symmastia
- Nov 2011 – Symmastia while laying down
- Nov 2011 – Symmastia after pushing apart implants
Sharing Courage
I know it has been a long time since I have posted on my blog, and I don’t think I really have a good reason. If you’ve followed my entire story you probably know that I had major complications after my implant swap and had to go through it all again, along with painful muscle repair. It really took the wind out of my sails, it was very painful, and it left me weak and unable to do much of anything for 6 months for fear of damaging the repairs. It was difficult physically and mentally, and I was checking every day to see if the repair failed and I would have to have surgery again. Actually, I still do that! I probably always will. Anyway, as soon as my ‘resting’ period was over I jumped into my job with NORRA and found myself working tremendous hours, then with limited internet at night. I worked with NORRA away from home for 4 months, and since returning I have been soul searching about my life and trying to get back my focus for Courage.
I want you to know that I read every single email and post that I get. Every story makes me smile and cry, and all of you are in my thoughts constantly. When I talk to people about my site, and about Team Courage, I often share these stories you share with me, making sure that others are hearing your voices and that they understand that the women around them are so much stronger and courageous than they realize, and that you never know what the woman next to you may be going through. I haven’t been able to reply and keep in touch with everyone the way I want, and I apologize for that. But I want you all to know that your stories stay with me and mean something to me, and your stories are what keep me going when I start to lose my way. Now that my life seems to have balanced out somewhat my plan is to put Courage Is My Strength first. Thank you for continuing to visit and for staying in touch, and for sharing your thoughts and fears and successes with all of us.
You may be familiar with Team Courage, my little race team that I use to raise awareness for Courage Is My Strength. I use my races to hopefully let the women facing frightening decisions about breast cancer and reconstruction know they aren’t alone and that although this is a terrifying time, there is light at the end of the tunnel and to never give up. I also use each race as a method to raise money for different breast cancer charities.
I have a race in California on October 8th, called the Powder Puff. The entire race benefits the Cedars Sinai breast cancer research foundation. Our goal as a team is to raise $2500 for that race. Next March I will be racing with one other woman in Africa for 9 days. It’s called the Rallye Aicha des Gazelles, or the Gazelle Rally, and it’s one of the toughest off road rallies in the world. Only 5 U.S. women have participated since its inception in 1991. Our goal is to raise $50,000 for that rally, and getting our non-profit status will help us reach that goal with corporate sponsors. We will be primarily be benefiting the National Breast Cancer Foundation, chosen because of their focus on providing mammograms to underinsured women.
All of you are so important to me, and I want to make sure you all know you are the driving force behind everything I do. My teams race in honor of all of you. To show the world the impact breast cancer, or the chance of developing breast cancer, has on so many women I will be adding names to my truck for everyone to see. It’s our way to show the world that we honor each of you. But before doing this I wanted to make sure you had the chance to remain anonymous if you would like to. Each badge of honor will read like this:
Heather Berger-Previvor ~Honored by Michele
We will be using only last initials if that is preferred, and we will be honoring survivors, previvors, fighters, and angels. Many of you contact me without giving your last name, and I’m not certain if some of you are still fighters or if you have been blessed to become survivors. If you could please let me know if you would NOT like to be included, or send your last name or initial and your current health status. And, please, if you have other women you would like to honor, I would be proud to add them to our truck. We want to honor every woman that we can. Please let me honor you, and please add other women that deserve to be honored too. I have links at the bottom of this page to take to our honor page.
The Courage Is My Strength website could not survive without your visits and caring. I don’t think I could survive without you women either! I am honored to have heard from each of you, and blessed by all of the help I’ve had in making Team Courage a reality. We are taking small steps at first, but I have every intention of making Team Courage as big as possible so that we can help other fighters, survivors, and previvors in their journey.
Thank you for reading my post, I’m so sorry it is so long. Thank you for all you have done for me, and for each other, and thank you in advance for your help. I know it’s time consuming, and a lot to ask, but every moment you spend making your mark on these sites helps us grow and help other women.
Thank you, I love each of you, and I’m thankful for you every day. You have my best, always.
Michele
Please visit each of our Courage sites below. Every visit helps us show our sponsors that people are paying attention to what we do. Every visit makes a difference. I know it’s time consuming, and a lot to ask, but every moment you spend making your mark on these sites helps us grown and help other women.
To see and add to our Honor Page
While you are on our site, it would mean so much if you would also make a post on our “I am Team Courage” page. This helps us show our sponsors that our team is important.
Although my focus is currently on the race in just 2 weeks, I have another website set up for our Moroccan race.
You can also help support Courage by becoming our Facebook Friend.
http://facebook.com/courage.racing
Keeping You In The Loop!
Since I have changed the look and feel of this blog, I am trying to keep it a blog about mastectomy and breast reconstruction and spend less time talking about the other aspects of Courage. But I have a new group of followers these days, and want to take one moment to make sure that you know there is more to my journey than just this blog.
Team Courage Racing and Team Courage Gazelles are my two off road racing endevours, and they mean so much to me. I use these two teams as a means to raise money for other breast cancer charities, as well as to raise awareness to women that are facing the same choices I faced, so they know there are so many others out there facing the same fears. We aren’t alone, and we should still be proud of who we are and know that we are all powerful and beautiful, with or without breasts, no matter our scars. Maybe our scars actually give us the freedom to be MORE courageous and strong. But I need your help to reach these women.
There are a few things you can help with. The most important to me is to share a little of your story, especially those of you that are going through breast cancer issues or on the previvor path. You are Team Courage as much as I am. So many of you have written to me or posted here, and it touches my heart every time you do. It would mean the world to me if you would post a little bit about your strength, or courage, or the pride you feel to be you on my new racing blog. Our team has a large following on Facebook and I would like for our fans to see that what we’re doing really does touch the lives of other women. Showing that we touch even one person makes a donation to our causes more likely, and helps get the word out about what we are doing. You can find the page for posting here. And if you will email me a photo I will create a page of all of our fans to see that the world is full of powerful and courageous women, and we are all Team Courage.
Another thing you can help me with is just making sure you are our friends on Facebook, like our posts, and that you occasionally visit our other sites or sign up for those blog updates. We have a huge following for Team Courage Racing on Facebook, but the Team Courage Gazelles Facebook page is just getting started and really needs more friends. Please friend us! My Gazelle team will be racing in Africa next spring, and our goal is to raise $50,000 so that we can make huge donations to the National Breast Cancer Foundation and the City of Hope, as well as spread the word about Courage across the globe.
Spreading the word is sometimes as easy as liking us on Facebook, but telling people is great too. With your help I hope to not only raise $2,500 for the Powder Puff race in October benefiting the Cedars Sinai breast cancer research foundation, reach our $50,000 goal for Africa, but also start our new project next year. After getting so many emails from young women in their 20′s that have been diagnosed with breast cancer, and seeing teens and women in their 20′s struggle with other intimate decisions and challenges, I’m starting the Save The Girls Project targeting young women and helping them catch breast cancer and other problems early.
Your support means the world to me, and I could not have made it through without the kind words, thoughts, and prayers of each one of you. Thank you for everything you have done for me, and all of our breast friends out there.
Updating Site!
It’s time for a little change! If you’re visiting right now, sorry for the mess! Give me an hour or two and we’ll be back online and pretty!
If you’re getting this update by email after Sunday, just ignore it!
So Much To Catch Up On
I know! I know! I’ve disappeared! I’m neglecting my blog! Ugh! I does seem that I have let it go for far too long, I had no idea how much my life was going to change and be crazy after the first of this year. I can’t believe the year is already half over!
I will post details of some of the excitement from the last few months, especially the details of the Mexican 1000. It was a great event, and I think you would maybe enjoy some of the stories.
I had a great time, and met even more wonderful people this year. I was able to meet face to face a lot of my phone/email friends, and we had tremendous support for Team Courage. I was surprised and touched by how many off road guys really stand behind what I’m doing. I don’t think I can ever say thanks enough.
I am sure you won’t be surprised to know I’m working on some big projects. Some of them I can’t talk about just yet, but others…
Nipples…To Be Or Not To Be (graphic!)
The subject I get the most questions about is NIPPLES! It’s kinda funny, we’ve all faced reconstruction and many of us CHOSE to devastate our bodies, choosing life instead of facing breast cancer. I do get emails about the pros and cons of reconstruction for each woman, but I get more questions, speculations, and detailed expressions of concern about nipple reconstruction. I think that you start considering your nipple reconstruction options once you are healthy enough mentally to close the door on how you USED to look, and looking forward to being at peace with your new body. And it amazes me that you ladies want my opinion! I’m honored to be a part of your thought process in this decision. So I’m going to tell you exactly what I think. This is just a reflection of the 15 months of breast reconstruction that I’ve been going through, and like all of you, I have thought a lot about it.
I think one of the hardest parts of deciding about nipple reconstruction and the type of reconstruction has to start with the
understanding that we are not going to look the way we used to. We have to say good-bye to the breast image we have in our minds from a lifetime of looking at our reflections. We have to understand that our bodies will be different. I like to think of it as New And Improved. My body isn’t really ‘improved’, but it’s still my body and I need to move forward with my life in order to be healthy.
My thoughts have gone from one extreme to the other about nipple reconstruction…I’ve thought that I would never go through it, then became kind of detached from caring, to my final decision of electing to have the surgery. There are also several options for nipple reconstruction, and I’ve done what research I can and have made that decision also.
First of all, during expanders I felt so freakish. Looking in the mirror they were disfiguring and painful to look at. At that point you really have no idea what your final results will be and have little faith that you will ever faintly resemble a ‘real’ woman again. What’s the point of going through another surgery to attach nipples to such freakish breasts? Looking down you just see big round smooth things. Really, sticking nipples on those things would totally ruin the stupid round softball effect, so why bother?
feel more feminine and whole. It sounds crazy, but in my mind I could vividly see the way my breasts once looked in lacy things, and I missed seeing nipples thru lace. I missed wearing a night shirt that was tight and driving my husband a little mad. I STILL, over a year after my mastectomy, am aware during intimate moments that there are scars across my breasts and not nipples, and it’s an unwelcome thought during a time that should be free of distractions. But the thought of not being ‘whole’ pops up at the strangest times. And I’d be lying to you if I told you anything different.Getting Back To Normal
I am now almost 13 months from my bilateral mastectomy. 4 months from my first implant swap with silicone implants. 3 1/2 months from damaging my surgery site and the falling of my left implant. 7 weeks from my second implants swap and horribly painful muscle repair. And for the first time since I found the lump in my breast I feel like I’m moving forward with my life.
No more constant reminders of my freakish body every time I move and feel the expanders under my skin. No more sadness or the gut wrenching feeling when seeing my scarred body with hard plastic deformed balls that look glued to my chest. No more trips to the doctor to have my expanders filled, causing tightness and pain for days. No more wondering when my next surgery will be, or what I will look like when this is all over. No more fear of my implant falling further down my abdomen.
I no longer feel like a freak 24 hours a day.
This is not to say that I don’t have my moments still of emotions and mental difficulties. Although I feel more comfortable and I’m not constantly reminded by pain of what my body has been through, I still see myself in the mirror every day and see my scars. I see my nipple-less breasts that almost look and feel normal. Seeing scars stretched across such a feminine area is difficult. It is a reminder of the trials of the past year.
But I am getting back to normal. Being busy helps a lot, and it’s also helpful that I’m not so obviously freakish when wearing clothes. I can lay on my stomach and wear bras and look completely normal in my clothes. My breasts feel real to the touch, which I never would have believed would be possible, especially during the expander stage.
I still have to be very careful because of my muscle damage. I can’t lift much of anything, less than 20 pounds only. I can’t run, jog, bounce, ride horses or motorcycles or in a race car. I can’t push or pull or lean forward for long periods of time. If I over-do it, I can definitely feel the left implant become a little unsettled from where it should be, and it’s a very scary and disturbing feeling. I don’t ever want to have to go through muscle repair again. And if you know me, you know I’m excitable and impulsive, and it’s been so helpful to have people that care about me around me to make sure I behave.
My breasts look ok. They almost look real. These implants are much closer together than my last ones, so I actually have cleavage instead of a huge gap between my breasts. If you really look, you can tell the cleavage is a little odd. My skin was pulled away from my breast bone and the implants actually touch there in the center of my chest. It’s a little strange because the skin doesn’t go all the way to my body like it should, and the implants are very close together. I have a tremendous fear of waking up one morning and discovering the skin has tightened up and made a little bridge between the breasts, creating a uni-boob. I seriously check every morning to make sure everything is still in place…no falling boobies or uni-boobs. So far, so good.
I’ve been fortunate to be able to work for NORRA exclusively for the last few weeks, and this will continue through May. It’s wonderful, because it’s an amazing organization and I’m surrounded by incredible people. And the craziest thing is that here I am, making my childhood dreams come true, and it all started with a lump in my breast. I never would have found NORRA, or started Team Courage, without that awful discovery. I believe there is good in every bad, you just have to look for it sometimes.
I’ve been able to put more time into Team Courage also. I hope to have my truck ready for the Mexican 1000 in May. That is a NORRA event, and I won’t be able to drive it in the event, but I hope to have it there and hope to see it cross the finish line of the 3 day, 1000 mile rally down the Baja peninsula.
The truck, Grace, will be moved next week to it’s new temporary home, a local shop that will be helping prep the truck. I’m excited that it will be close so that I can be a part of the prep work, which I missed so much before our last race. I’m going to Phoenix this weekend to pick up several boxes of spare parts and new body parts. I’m so excited about the body panels, they will Grace some more curves. I totally believe in the joy of big hips, and right now the only flare on the truck is over the front wheels. The new panels will flare in the rear as well, giving the truck her much needed hourglass figure.
I will have enough new panels to save my current hood and sides, and I may try to find a new door, so that I can mount an entire side and hood on my walls for decoration. I want to preserve these pieces because I have changed our logo and our sugar skull will never be seen again.
Our new logo is more feminine and friendly. The truck will be painted black to match the logo. We have a lot of work ahead of us, but I’m hopeful that it will work out. I get to do some of the welding and work on the truck, and in the end we’ll be able to race to make a difference to other women facing breast cancer and breast reconstruction. That is what makes it all worth it and wonderful at the end of the day.
Thank you so much to all of you that stay with me through this experience. I couldn’t have stayed sane without my Breast Friends, making sure I knew I was never alone for a moment. Thank you for all of the emails, the touching stories of each of you make me smile and cry, and even when I’m quiet like I have been, I’m still with you in my heart.
I’m OK, I Promise!
Thank you to all of you that have been checking on me or sending me little messages to let me know you’re worried or miss my posts. I’ve also received a ton of emails from new BFFs that I haven’t been able to answer, and I’m deeply sorry about that. I am ok, and seem to be healing properly, and I’m sorry I’ve been out of touch!
I’ve come to a point where I realize I need to divide my site again. I still have healing to do, and I still have things to share about mastectomies and breast reconstruction. But I’m hopefully nearing the end of my reconstruction, and if I bog this site down with updates about the other exciting parts of my life I may miss the opportunity to help someone that needs it. I also have some personal issues that require I refrain from posting everything I’m up to on this site. So I need to really start developing some of my other sites that have just been sitting around and keep this one to focus on breast reconstruction.
Very exciting things are happening for me, and I can’t wait to share them with you all. I wish I could blab it all right now, but I just can’t. I can’t even tell you where I’m blogging from! But I have a project in the works for Team Courage, and if all the pieces fall into place it will be amazing. I will finally be able to accomplish the dream that followed finding the lump in my breast, making a difference to other women that find themselves frightened by their future of breast reconstruction.
Part of my silence has been because I have been so focused on all of the changes going on in my life, and the development of these new projects. As soon as I get some of my crazy life in order, I can get back on track and keep up with my posts.
It’s been just over a year since my first surgery, and I still vividly remember the almost debilitating fear of finding a lump. I remember how afraid I was that my life would be over, and now I look back at the last year and marvel at how much my life has changed because of that lump. There was fear, but that discovery lead to many new and wonderful friends, Team Courage, and NORRA. It’s been a most amazing year. And I feel like I have lost a huge part of myself, and I’m still coming to terms with my new body and the long recovery I’m facing right now, but I’ve gained so much more than I’ve lost.
After everything, I can still say I am a very lucky woman.
I can live without my breasts, but I can’t imagine my life without Team Courage or without friends like you.
xoxo
A Long Tail of Friendship
In 2000 I lived in Minnesota and sold real estate. There are not very many transactions that stand out as life changing, but there is one that I will always remember.
A married couple with 3 boys wanted to sell their home. They were struggling financially and wanted to move back to Florida where they thought their life would be better. I was sitting at the kitchen table talking to them as their kids honestly ran around the house yelling and screaming, chasing each other and their poor cat, throwing things…it was mayhem. The house was in disrepair and you could feel how desperate they were to sell their home. I visited with them 2 or 3 times before they listed their house, and a few times 
after to make sure things were ok, and each time their cat would always find his way onto my lap. For living in fear of the three boys, he was the sweetest cat ever, and he sat quietly in my lap for my entire visit.
The family decided to go ahead and move to Florida, they were just going to pile the family into their minivan and go. I asked about their plans for the cat, and they said they were going to take him to the pound. They also were struggling with the thought of commission; they needed every penny just to survive. I offered to return my share of the commission, about $3000, if they would let me keep the cat. I left with him that night.
The cat’s name was Callie. Despite what you may think, they cat was neither a calico nor a girl. He was a huge white cat with tabby spots, but his owners thought he was a calico. By the time they figured out they were wrong on both counts the cat already answered to his name. So they decided to pretend his name was Calzone, Callie for short.
I took Callie home to our cozy home in Stillwater. My dog, Daisy, loooooved kitties. Although she was blind, she knew I had a cat the
second I hit the door. She was so excited that she tried to get in the cat carrier with him. She was a 65 pound Australian Shepherd, so she didn’t fit, but she tried to be friends with Callie for the rest of her life.
Everyone who met Callie wanted to keep him. You could call him like a dog, and he was actually more loyal than most dogs I’ve owned. He wanted nothing more than to be petted and loved. I think it was from spending years as living entertainment for rowdy boys. He loved people and kindness.
Callie was declawed and neutered, and the sweetest cat I’ve ever owned. He never did anything wrong, and when I was home he would follow every step I made. If I was in a chair he sat with me, if I was asleep he was sleeping by my side. Daisy continued to try to cuddle with him, but she never got the chance. In 2009 the best dog ever left her kitty friend behind as she moved on to another world, hopefully one filled with sunshine and dog loving kitties.
Callie’s best friend was my giant cat Oreo. Oreo was a huge long haired cat that was born the night I graduated high school. He was the biggest cat many people have ever seen. He was old by the time Callie met him, and Callie took care of him as he grew older. Oreo
went into a coma while I was holding him. He was fitful and uncomfortable, but not aware. Callie jumped onto my lap and lay down next to Oreo, and stayed with him until he died.
Callie wandered away from home. Since he didn’t have claws and had always been an indoor cat, we guessed that he wouldn’t be able to survive the hundreds of acres of woods that surrounded our house. There were wild dogs, foxes, and a bob cat…we didn’t think we’d see him again. Over a month later I sat on my front porch talking to a neighbor and she asked if I had lost a cat. I told her I had, but we knew he was probably dead. She said “That’s too bad, because a cat showed up at my dad’s house, and it’s the sweetest cat I’ve ever seen.” I didn’t ask what color it was, or any other details. I said immediately “Then it’s my cat, because Callie was the sweetest cat ever.” I went over right away, and there was Callie, sprawled out on their deck, lying in the sun. I called his name and he jumped up and started meowing. I took him home and he never tried to go out an open door again.
When we adopted Cesar, the pit bull, Callie was pretty disappointed in us. Cesar, like Daisy, decided that Callie was pretty awesome, and he stared a lifelong quest of trying to cuddle with the cat. He was rejected a lot.
Over the last year Callie started to decline. He lost a lot of weight, and started to seem very weak. It was hard to watch such a large, powerful cat start to decline. He went from almost 15 pounds to 5. He started to have some of the problems that plague old cats, but he also started to mellow towards Cesar.
Cesar kept trying. Every time Callie would lie down, Cesar would try to lay with him. If Callie was on my lap, Cesar wanted to be too. Callie pretended that Cesar did not exist; Cesar continued to try to win his friendship.
A few weeks ago Callie was asleep on the back of the couch. As usual, Cesar snuck close to him (as much as a 70 pound pit can sneak), and as usual tried to place his head next to Callie for a nap. Previously this has resulted in bites, slaps, and outright feline disgust. But this night, Callie allowed him to snuggle. Cesar instantly fell asleep.
Over the last few weeks everything became harder and harder for Callie. The rate of decline became shocking. He still tried to stay by my side, but started to sleep on the heat vents for warmth and staggered on his feet. It was so hard to watch this amazing cat start to fail. I thought often about Oreo fighting for his last breath with Callie next to him, and about Daisy who died alone, and wanted to give Callie a better good-bye.
Jon and I took Callie to the vet this afternoon. Sadly, the vet had lost his cat this morning. Before we entered the room, they covered the cold counter top with a warm, thick, fuzzy blanket. We placed Callie on it and started petting him. He looked at the vet and rolled over on his side and purred while we all scratched and petted him. He purred while his leg was shaved with an electric razor, purred while the tourniquet was applied, and started flexing his feet in happiness while the vet reached for the needle. He looked back at Jon as the medicine took effect, but he purred and flexed his pink toes until his very last breath.
I hated to say good bye to my great friend, and hated to see his life end, but I am so thankful that he was so happy, and thankful that the vet allowed us the option of letting him go when he was warm and comfortable and feeling loved instead of in pain and alone. I can’t imagine a better way for my little friend to say good bye.
That was the best commission I ever made.
Hugs to Debra and Lisa
Just wanted to send a quick note, tomorrow two breast friends will be having their implant swap. Lisa and Debra, you’ll both be in my thoughts tomorrow! If you feel like it I would love to hear how you are doing, once you get back on line. You will be so happy with how much better you will feel with the implants. Expanders are kind of like Hell, and it makes the implants seem wonderful.
Just remember to take care of yourself, don’t over do anything, and even though you will feel great don’t lift, push, or pull. Even wait a little bit before sleeping on your side or tummy. Don’t damage your reconstruction, you don’t want to have to go through it again. You still have some healing to do, you’ll feel great, but let others take care of you for a little bit longer.
Good luck, ladies. Thoughts, prayers and hugs to you both!
Reflecting Before My Last Surgery Of The Year
Just a little over 12 hours before I check in to the hospital for my last reconstruction surgery of the year. It’s been such a long year. January was my mastectomy and immediate reconstruction. I spent 5 days in the hospital, came home for one day and ended back in ICU for 2 days with a blood clot. I lost my job while in the hospital. February started my mostly weekly trips to Denver for expansions, fluid put into my expanders helping create a new ‘breast’ out of muscle and eventually implants. That was February through April. I had to wait 6 months for my new insurance, so I had my implant swap mid-October. Now I’m experiencing troubles and tomorrow will be a day of repair-repairing muscle and Alloderm, removing scar tissue, and replacing my implants.
When I started this wild journey, I just hoped that I could reach a few people and make them less frightened of the road we were on together. My goal for the year was to hopefully get 1,000 visits to my site and 1,000 visits to my YouTube Chanel.
I’m so lucky to be able to say that my site has had 10,766 individual visitors since Feb 7th of this year. I am getting between 200-400 hits per day. My YouTube channel has had over 345,000 visits. I get emails from several people a week, sharing their stories, triumphs, and fears. Although this has been a difficult year, I am truly blessed to be on this path and to have such a wonderful group surrounding me.
Thank you all for the support and friendship you have given me! My life wouldn’t be the same without you all. And your support has allowed for even more exciting things for Courage next year. I think 2011 is really going to be the year that Courage gets to make a difference.
Thank you, and I’ll check in soon!
Verdict From YouTube
Dear CourageIsMyStrength:
Thank you for submitting your video appeal to YouTube. After further review, we’ve determined that while your video does not violate our Community Guidelines, it may not be appropriate for a general audience. We have therefore age-restricted your video. This does not negatively impact your account standing.
Sincerely,
— The YouTube Team
I think this is great, I have no trouble whatsoever with the age restriction of my video. As a matter of fact, I would not mind if all of my videos were age restricted. I don’t think it’s appropriate for kids…even my 14 year old son doesn’t want to see my videos, and they aren’t appropriate for kids. Kids don’t need to worry about this kind of awful stuff, they just need to be kids.
But thankfully I’m still online and out there! Thank you for all of the FB postings and private emails, it’s great to know you’re still behind me!! Take care!
Oh, and here is the video that caused all the fuss. And, wow, I just watched it again, and I can’t believe what has happened since that video. I really need to do another one.
Trouble With YouTube
Courage Friends and BFFs! YouTube has disabled one of my videos because someone feels that my video was sexually provocative. I don’t believe it was actually watched by YouTube before being disabled. Please, if my videos have helped you find courage or peace in what you’re going through, please post a note on my home page so that maybe they will allow the video back on YouTube so that hopefully it can help others. Thank you!
I have appealed the decision, but I don’t know what will happen. I hope that it doesn’t then impact my YouTube channel, because most of the women that follow my blog and most of my Breast Friends have found me through YouTube. I really hope this doesn’t get worse, that it gets better and we can keep reaching women.
Here is the link to my YouTube channel:
http://www.youtube.com/user/CourageIsMyStrength
This is not the disabled video, I just posted it because I felt like it.
The Unexpected Hero
Today was my final ‘second’ opinion about my reconstruction. This appointment was with a doctor that I had been recommended NOT to see by many people because of different reasons (none about ability) but was suggested to me by one of my personal doctors that I trust very much.
I went in expecting to not like him. I also expected an awful appointment since my last several have been so bad. I expected to leave without any answers and still uncertain of what path I should take. I expected to keep my appointment on the 30th in Denver to have the repair of the damaged left side as well as fat transfers and to wake up unhappy with the recovery of the fat transfer, unhappy with the repair, still unhappy about the way I look.
I sat in a small conference room and was greeted by the doctor. We’ll call him Dr. T. Dr. T walked in simply dressed but with style, a head full of uncontrollable hair and a no nonsense manner typical of a Minnesotan. He asked about my family history and surgical history. I told him about the left side and that I had an appointment for fat transfer at the end of the month. He said “We’ll talk about that in a little bit”. I explained that I wanted his opinion of the fat transfer and of the different types of nipple reconstruction. He wanted to examine me first. That’s all I told him. I never mentioned how I felt about how I look, or talked about my concerns or fears.
I moved to an exam room and he came in and gently poked and prodded, not really saying anything. He moved the lose implant around and looked at the overall ‘picture’ of the two sides together and within 3 minutes said “I’m done here.” and directed me to put my clothes back on and meet him back in the first room.
He came back in and started talking right away. Basically he said “There is absolutely no reason for you to do fat grafting. It’s a highly controversial procedure anyway, but especially in a breast. Not all of the fat will be absorbed and when that happens your body builds scar tissue around the dead fat, which causes a lump. Then you’re right back where you were before mastectomy with a lump in your breast and no one will know for sure if it’s a fibroid or breast cancer.”
“Improving the look of your breasts can easily be done by using different implants. I would never have used those implants on you. They are too small. You should have 500-600cc implants. Your implants are too low, and larger implants will make the tops of your breasts look better as well as the sides. You will never look like you did before; our main goal is to make you look the best possible while in clothing or a bathing suit. You’re not proportionate right now, and your frame can handle much larger implants. I think you’ll like the results better with larger implants.”
“As far as tattooing the areola for nipple reconstruction, which looks fine from about 75 feet away, but any closer than that and it’s just ridiculous. I recommend a skate flap from high on the inner thigh that will give a better result. And there’s no reason to have nipple reconstruction until at least a few months after we have the reshaping of the breast finished so that we make sure it will be in the right spot.”
“As for fixing the left side, that side may never be completely right, but there is still a lot of room for improvement on both sides, and I wouldn’t be satisfied with these results. There are times when I have to tell patients that we have to stop reconstruction because we’ve reached the best result we’re going to get, but you are not at that point yet, and you have plenty of room for improvement.”
Well, holy crap. He just addressed every single thing I was worried about AND echoed my own thoughts. It was a huge relief to hear these words from him, and I became very thankful for the collapse of the left side which led me to Dr. M, who in turn led me to Dr. T. Wonderful!
I redressed and went to the appointment desk. They had an opening in late January. I said that was okay and started asking about billing because I’ve reached my out of pocket maximum for 2010 but will be starting over in 2011. When I told her that, she jumped up and told Dr T and they managed to work me in on December 28th.
I did my pre-op today and I’m all ready for my surgery on the 28th. I won’t be having liposuction, fat transfer, or nipple reconstruction. I will have the left side repaired and new implants placed, this time they ordered 550cc implants. He was worried the weight of the 600s would further damage the torn left side. The only thing we did not talk about was my Alloderm and I assumed he knew I had it, but I went back to talk to them to make sure. He was gone for the day, but will call me tomorrow to make sure the increase in size is ok with the Alloderm.
I can’t tell you the weight that is off my shoulders from this. I want to say again that it’s not all about size; it’s about fixing the problems and trusting my surgeon. How can I trust if we don’t see eye to eye? It’s about feeling that I was on the wrong path and not being listened to, especially when I felt the reconstruction was not going to finish in the best way possible. It’s a huge relief to hear my concerns voiced by a plastic surgeon instead of being told that I should just be happy. I have been so worried about having my finishing touches done while unhappy, I feel much better with Dr. T and knowing that he doesn’t think I should settle for what I have. At least not yet. I feel like I just turned 5 years younger. I’m so happy!
Dr #4′s Wonderful Words
Quick note while I’m on my lunch break!
LISA! Thank you for your note, I’m going to write more to you soon!
Some friends of mine in California have wonderful connections, a friend that is a renowned breast cancer surgeon. They contacted him for me and he ok’ed for me to call him. We played phone tag a bit, but I did get to speak to him this morning.
We spoke a bit, and he asked me “So tell me what you think about how you look now, what do you think about where you are?” and I answered “See, I really hate talking about this because I sound like an awful, vain person.”
He said “Wait. Reconstruction is about you. Reconstruction isn’t over until you have the results you need.”
Finally.
So he’s hooking me up with a plastic surgeon in his office. I’m playing phone tag with them now. Although they are in California. But we’ll work out that detail later.
So things are looking up. I also have another appointment on the 15th with a doctor here.
More soon!
“My Heart Beneath My Plastic Chest”
I know I haven’t been doing a lot of posting lately, and I’m still behind on some of my adventure updates, my post op photos and my post op video. I’m so sorry! I haven’t forgotten at all!!
It’s been such a stressful time for me. I’ve been quiet, some of you have started checking on me because you haven’t seen a new post, and I appreciate it so much. I am fine, but the last few weeks have been the biggest struggle I’ve had in a very long time.
Returning to my job in Colorado wasn’t an option, so I was job hunting in my little small town. It’s been very hard. And on paper I’m probably not the best candidate for a job because of my medical problems and the job changes because of my positions being cut. I did get a job, and I really, really love it. I’m working at a medical center and everyone is so kind and supportive and helpful. It’s been great from the very first day. After I’m through training I will only work 16 hours a week, which is awful for my checkbook but great for the other work I do with Courage and NORRA. I love going to work everyday, and I’m so thankful that this is place I’ve ended up.
However, I know there is a place for me in California. It’s so hard, because I love NORRA and my NORRA family, and of course the sport of off road racing. But my son is struggling in school and he and Jon don’t want to move to California. We’ve talked about me splitting my time between the two places, but the more often I do that the less likely I will be able to find a paying job in each place. And I’m very reluctant to move Jamie at this point. We’ve moved a lot in his lifetime, and this school is being very supportive in trying to work out his issues and get him on track. I don’t want to mess that up. He is so important, and I really feel that moving him is the wrong choice.
To add to my heartache of what to do, Jon’s job is falling apart. I don’t know what’s going to happen, but his pay has been cut in half and now we don’t make enough to live here. And when I say ‘here’ I pretty much mean this area, not our home. We live in a very expensive area and moving to a town where we would commute would mean Jamie would have to change schools. So at that point why stay in Colorado at all? And facing paying rent…sigh…I just don’t know how that’s going to happen. His job is changing drastically everyday, and since he’s got a specialized talent it’s hard to find somewhere else to go. It’s been a mess.
Yesterday I was a wreck. I cried a lot, even at work which was mortifying for me. What do I do? Do I leave this job I worked so hard to find? Do we start to sell my book collection and saddles and stuff to try to hold on a little longer? Do I leave my family and go back to California? When will I be able to have surgery again now that I’ve lost my insurance again? Should Jon and Jamie go back to Minnesota to go back to work at a shop there and to be near family while I go to California? What am I going to do if we get evicted? Where will we go? How can I get Jamie’s life on track if ours is constantly falling apart? Am I going to have to work at K-Mart when I’m 80 just to eat? What would have happened if my twin had survived instead of me? Would she have made a better life than I’ve been able to? How do I have friends when I’m such a wreck? You know those kinds of days….
This morning I woke to find some wonderful posts on my blog, and one from YouTube. If you have subscribed to my blog and are not getting the comments as well, you should subscribe to the comments. That is where the inspiration is. The comments are usually from women or family members sharing their stories and pain and happiness and hope. My posts are just blah blah blah, my readers are the true inspiration.
My friend from the UK, Kay, wrote to check in! She was one of my first ‘breast friends’ and was right behind me in having her first surgery. She’s been a great inspiration to me. She wrote:
Hi Michelle!
i know we have already caught up via email,but felt i needed to reply ion here also =)
Surgery went well. For otherds on here, i got the ‘gummy’ implants (Allergan 410′s) in moderate height,extra full projection in the 370gram size.
I am healing well but my left side has ‘dropped’ so i am looking odd right now =( I am just waiting for an appointment with my PS. It may be that the other side will drop to match but the skin seems less loose on the right so i don’t think it is going anywhere. I am hoping i dont have to have more surgery but if i have to then i will.
Luckily i was only in hospital one night/2 days this time so Emily had me back home pretty quickly!
xxx
It was great to hear from her and know she’s doing ok. She also helped me wonder if part of my dissatisfaction is because maybe one side dropped right away and the other hasn’t yet. That’s worth checking out. I have also been worried about having another surgery to fix my implants because each side looks so different.
A new friend, Tricia, wrote:
Hi Michelle,
I can’t tell you how grateful I am to have discovered your web site. I so much admire your courage and generosity. I was diagnosed with breast cancer two weeks ago in my right breast and thus am flooded with many decisions to make. It’s been difficult to get actual photos to prepare myself for what’s ahead, so I can’t thank you enough for what you have done to help women in my position. You are a dear, and I love you even though I haven’t met you. What spirit you have! How I feel comforted by you!
I’m a psychologist and a college professor, with an abundance of supportive people around me, so I’m grateful for that! Also, since I get yearly mammograms, supposedly my two tumors were found early. Still, I won’t feel safe until after my surgery. I have been given the choice of having a lumpectomy and ending up with a misshapen and small breast or getting a mastectomy. I’m leaning toward a mastectomy with reconstruction, since my breast are already rather petite, so taking anything out of them is nearly disastrous. What I don’t know is whether to have a double mastectomy or to save my cancer-free breast.
I wish I could find out whether any feeling of having a breast returns. You mentioned that the nerves are supposed to grow back. Is it your understanding that you will once again experience your chest as a part of your body?
Tricia
Tricia’s post reminded me how hard this is. Tricia, I am so profoundly sorry that you have breast cancer. I’m thankful that you found this information when you needed it. There is certainly a lack of information out there about how a real woman feels and looks before, during, and after surgery, and it makes it so hard to make the choice that’s right for you. I remember learning about the loss of feeling in my breasts, and I thought it would be fine…at least I wouldn’t have cancer. I can tell you that during the entire time you have expanders (if you have that type of reconstruction) you will feel like your chest is most certainly NOT part of your body. But it does get better. Very rarely women don’t have a loss of feeling. Very rare. I have had women that had surgery many years ago tell me that they never recovered sensation in their breast, and others say it just takes a very long time. My numbness was originally from my collarbone to about 2 inches below my breasts and armpit to armpit. It is getting better, and is now mostly just the circular area of my breasts. The muscles below have feeling, of course, but I still don’t feel touching of my skin. I didn’t want to face more surgeries or continue in fear, so the double mastectomy was the right choice for me. But it’s not right for everyone. Read some of the other blogs I have attached to the right side of my blog and see what some other women have gone through to make sure that it’s the right choice. And no that whatever questions you have and whatever you need, you can always write and check in! And I love you and all of my breast friends, you all help me so much more than I could ever help you!
Another new friend, Lori, wrote:
THANK YOU! THANK YOU! I am in the process of making a decision about my breasts. I do not have BC, but I have a family history of BC and I am beginning to form lumps and cysts and this makes it hard to stay safe. I am leaning towards the double mas and reconstruction. I feel that your videos and blog are giving me the tools that I need to make a well informed decision. How do you know what is right? I am just so emotional and scared and I want to make sure that I make the right decision. How did you come to the conclusion to have the surgery? Also, I am a mother to four girls between the ages of 10 and 3. I do not know how to talk to them about this or how to prepare them? Any advice on that?
Thank you again…you have made me feel a little less alone during this rollercoaster. xoxo ~Lori
Hi Lori. I think the biggest part of my decision was seeing my mom suffer so much. She is a fighter, and is very tough, but I don’t think I could go through what she has gone through. And I don’t want the last years of my life to be spent fighting breast cancer, especially when facing MRIs every six months for the rest of my life. I just wanted it (the chance of BC) GONE. So I decided to have surgery. My son was 13. My mom has had cancer since before he was born, so he has grown up knowing what it does to you, so it was a fairly easy conversation to have. I will ask my friend, Heather, if she would mind talking to you, she has younger kids and had to face what you’re facing. She is an amazing woman and I’m sure will have great advice for you.
Sherry shared a wonderful story:
Hi Michele,
I was dx with invasive ductal carcinoma on Sept 14th, ER+, PR+, Her2-, 1.6cm, no lymph node involvement. My husband felt a lump the week before Labor day. My birthday was Sept 7th. My husband is not a shopper so I rarely get gifts from him, but this was the best birthday present he could have given me this year in that I could still be walking around, fat dumb and happy, with it growing inside me.
Although I am 49, my boys are only 13 and 15 so together my husband and I decided on a bilateral mastectomy with reconstruction. During my research/soul searching phase I had found your youtube video which lead me to your site. On October 13th I began my journey. Because of you, I had no surprises the first time I looked in the mirror. Neither did my husband who actually said, “they lookreally good!” and they did. For that I would like to thank you from the bottom of my heart which lies directly beneath my plastic chest.
That’s my story, just so you know why I am on your web site. Anyway, I wanted to talk to you about your ambitions of being a Navigator. One thing you might consider checking into is the possibility of getting a job at the hospital you mentioned, the one that is building the new cancer center. Some hospitals offer tuition assistance to employees as long as the field of study is medical and he/she agrees to remain employed there for a period of time. Go to the hospital’s HR dept and talk to them, resume’ in hand. Put all your cards on the table, be confident and proud of your achievements.
Good luck to you. You’re truly an inspired individual and deserve to see your dreams realized.
Thanks,
Sherry
Sherry, I loved your phrase so much I had to use it as my title. Your story touched me so much. What a great ‘gift’ your husband gave to you. I’m thankful that you found comfort in what was to come by my posts and videos, and I’m beyond grateful that you are happy with how you look so far. You are so sweet to give me such words of encouragement and support. I feel that my new job would be very helpful in my desire to become a Navigator, although they don’t have a tuition program. But I’m in a great place to continue working on that dream. Thank you so much for writing, and I hope you keep in touch.
Michelle,
Thank you for posting your videos and website I think it is very helpful and helps others to be hopeful. I was just diagnoised with a duct carcinoma in my right breast. I unlike some have implants. In 2007 I noticed a hard lump around my nipple area and a needle biopsy was done which they said was scar tissue. Well the area got a little bigger and it has taken me 2 yrs to get anyone to pay attention. I had a stereotactic biopsy and it showed the cancer.
My surgery will be December 1, 2010 for a mastectomy w/sentinal Lymph Node BX Latissimus flap reconstruction. I have taken this very well but still have alot of emotions which is normal. I meditate and talk open and honest with my son who is 20. My husband was killed 1994 and it has just been my son and I.. I heard someone say my cancer is a gift from God, in a way it is I actually feel more alive and awake than ever, Weird Huh!..I see things in a different light. Even after all the struggles this happening has opened my eyes even wider. Thank you for your courage and reaching out to everyone. HOPE*****LOVE*******FAITH
Angela, I’m so very sorry that you are facing cancer. That is so heartbreaking, and I’m thankful that you have your son with you to go through this at your side. That is such a blessing. And I’m so proud of you for standing behind what you know of your body! Thank goodness you kept pursuing the fear that there was something wrong. A lot of my friends on this blog have had the Lat flap, and they have had a variety of different results. I hope that all goes well for you, and hope that you will let us know how you are doing once you get home. Hope, hugs, and love to you.
Angela’s post really hit home for me, because I also think of all of this as a gift. I was spared cancer, and my heart breaks for all of you that have had to face that demon. But the surgery, recovery, and loss is difficult no matter the situation. It has been a gift because of all of the new friends I have made. And after a very hard day it made me feel so much better to hear these words of wisdom and support and strength from others, and it helped me put a bad day into perspective.
Today is a better day. School is a little better, I’m a little less ‘new’ at my job, things are looking up in those areas. I’m still worried and frightened of what’s going to happen to our house. It’s very frightening to be on the edge of financial disaster and in fear of not making rent, but there are so many other things we could be in fear of right now. I’ve made it through this year, and a few times along the way I wasn’t sure I would. I have ABSOLUTELY INCREDIBLE friends, wonderful people in Colorado, California, and in places I’ve never been because of this blog and because of the common thread of breast cancer.
I am a Previvor!
I think I forgot that for a moment. I’ve almost made it to the other side, and I’m a better person than I was a year ago. I have made it through some awful and awesome stuff. But my heart still beats strong beneath my plastic chest, and I know I can get through this too.
I am a Previvor. I will never give up. And I am not alone.
Thank you so much ladies, for reminding me, and for standing with me, and for keeping me on track. Thank you so much for making a difference in my life!
Shut Up And Color
I know I’ve been so bad at writing lately! And I have so much to update! I flip flop between being crazy busy or completely un-motivated. It’s so annoying!
I have noticed on several of my friends blogs and while talking to friends that A LOT of us are finding ourselves in a bit of a funk. No one is mentioning the holidays as a source of stress, I guess it’s too early for that. But I’ve noticed that many of us have been going through our surgeries and recoveries for most of, if not all of, the past year. We all seem to be worn out and a little weary, and having our share of the blues. I think it’s normal to get down after so much has happened to our bodies, and reconstruction can be a long and hard road. But I’m hoping that each of us finds our way out of our gloom, and I want all my girls to know I’m thinking about you every day. I worry for you on your bad days and cheer for you on your good days, and always care and stand behind you no matter what!
Since my Victoria’s Secret post, I’ve moved on from those feelings. I don’t really look at myself too much right now. There’s not much point, and I know I’m still in between, so I need to just ‘shut up and color’ as my dear friend Heather would say. I will be posting photos and another video soon, I’ve just fallen behind on that project.
My new medicine for SAD seems to be doing okay. It’s not an extended release medication, so I wake up feeling sooooooooo blue, especially since the snow has finally started to fall for real and the grass will probably be covered until spring. I did get excited this morning when I saw the disabled cruise ship was passing Encenada, Baja. Encenada! I’m sooo retiring to Baja. I have been looking into our local community center which has a year round pool, exercise rooms and classes, as well as an ice rink. I think I’m going to check it out this weekend and hopefully join. I do think getting out and exercising will make a big difference in how I feel.
So, I have a new job. I’m very excited about it, although nervous because I really want to do a great job because I like it so much. I’m working at a medical clinic in town. I love that, because I really want to go to school to be a breast cancer patient navigator. The course I want to take has been noted as being one of the best in the country, they require at least a 2 year degree. I don’t have a degree, but I called them and talked to them about Courage and about what I’ve gone through personally, and they will accept me as a student without the degree! Yay! Unfortunately, I can’t handle the tuition a the moment. Our area doesn’t have a patient navigator. Our hospital is building a huge cancer center that will open in 2012. One local nurse is getting navigator training for the cancer center, but I believe she’s wanting to handle all types of patients. There are clinical navigators, nurses or others with medical backgrounds, and non-clinical navigators that don’t have medical training. I would really love to help in that way. So I’m working towards hopefully taking the classes next fall. Anyway, my job is part time evenings and Saturday mornings. I’ll also pick up shifts when people call out. Right now I’m working full time while in training. Everyone there has been very welcoming and wonderful, and I just hope I do a great job!!
I’ve been thinking a lot about Courage, and where I want it to go, and what I want to do. I would really like to hear what you think! But I’m not going to tell you here! I’m going to start a new post so that commments will make more sense.
Coming Face To Face With My New Body
This morning started off as a normal Sunday around the house, making breakfast, enjoying a relaxing cup of coffee before the day got started. It’s Halloween, and we decided as a family to go to Grand Junction to get Jamie a costume at the last minute.
I was walking around the house in my pjs for awhile. My top was a little tight, and while looking down I noticed that without the bandages that we removed last night, my breasts were a little odd shaped. Kind of flat across the front. I pulled up my shirt to investigate and could tell that on either side of each incision there is some swelling and there are still stitches under the skin, causing the ends to pouf out a little bit and making my breasts look flat. I remember that last time I was swollen in the same places and it eventually went down, leaving a nicer round shape.
So we trekked to Grand Junction, about an hour away. We bought Jamie a hysterical chicken suit (I’m so lucky he has such a great sense of humor!) and walked around a bit. We pigged out on mall food and decided to go home.
As we were leaving the mall, we passed Victoria’s Secret. I’ve been wanting a new bra, I haven’t bought one yet, and decided it was a great way to celebrate the end of the second phase of breast reconstruction since my bandages were removed.
So I walked through VS, excited about new girly things. I picked out something without a lot of padding and in fun colors. I picked out a pretty aqua bra and a royal blue one. I thought splurging should include fun as well as function!
Although I had been measured right after the implants were put in, I still wanted to try on the bras to make sure they fit properly. I went into the fitting room and took off my sweater and bra and took a look at my beautiful new scars.
I almost dropped to my knees. I think I said “oh, no, no” out loud. I felt like I had been hit in my stomach as I looked at myself without bandages for the first time.
I was not prepared for how I look. Not even close.
The swelling has gone down a lot. My right breast looks misshappen. The scar is almost in the same place as before the surgery. Under my bresast the skin tucks under kind of like it should, but around the breast bone it’s a little odd.
My left breast scar is much higher, which I think is the biggest contributor to my shock. The scars were even when I had the expanders. The scars being so different, not symetrical, makes the whole thing look worse. Also, the skin under my left breast doesn’t tuck under like the other side. I can tell by looking that not only is the implant lower on that side, but it’s sitting differently, or the muscles are different, or something.
I think more than anything it had just been about a week since I really looked at myself. Probably since the last published photos. I’ve changed a lot since then, and the removal of the bandages revealing the mis-matched scars was surprising because last time the scars were even.
Anyway, I swallowed my sadness and tried on the bras. Covering up my breasts made me feel better. I put my clothes back on and left the fitting room, but I was still devistated.
Jon and Jamie were waiting, expecting me to be excited. I couldn’t look at them. I couldn’t speak to them because I knew I would cry. I put the blue bra back, but I decided to keep the aqua one because I knew I will come to terms with this and wish I had it. I’ve always wanted an aqua bra. Jon and Jamie just stood there while I tried to pull myself together. I finally just said “I hadn’t seen myself without bandages” and cried a little bit. I paid for my items and we left, saying very little.
I always kept in the back of my mind that I am certain I made the right choice to have my surgery. I don’t regret it. But it is difficult sometimes to come to terms with how much my body has changed. I had a discussion about it with one of my nurses. She had a biopsy from the top of her breast 5 years ago. She said that even now, every time she looks at herself she is reminded of what she went through.
Ironically, while writing this post I recieved an email notification of the reply made by Eva about my “hardest” post. She is very much at peace with herself, and has wonderful words to share for all of us, and I thought it was very well timed. I wish I could be at the same place she is. I think I will be there, but I’m just not there yet.
I think I have been more upset since the implant swap because while in the expander phase I always had hope that at the end of this I would end up looking fairly normal. Each step of the way, as I’m closer to the end, I realize there is a large chance that won’t happen. I think I’m now mourning the loss that I was working so hard to deny before.
It will get better. It’s not that bad. I was just not prepared for the sight that awaited me today. I’ll get through this, it’s just a silly part of my body that no one sees anyway, but I’m learning I’m not as invinsable as I thought.
Courage Is…
This song was originally by The Strange Familiar, and one of my best friends, Ashley, played it for me for the first time over the summer. I’ve quoted the words here and there over the last few months, but when I saw this version of the song I just loved it. And I shared it on Facebook and some of my ‘breast friends’ picked it up and shared it too. I thought I should share it here for those of you that know exactly what this song is about.
I should also give you a little update on things here. It’s been snowing, although it should be warmer this weekend. I hate snow. It’s getting dark early. I hate dark. It’s cold. I hate cold.
I have struggled this year, obviously. But there’s also things I struggle with that are too personal to post here. It’s been a battle, and with the onset of doom and gloom of Colorado winter I find myself crying a lot, awake all night, sleeping all day, just basically a mess. I went and talked to my doctor today and we talked about my history of Seasonal Affective Disorder and past treatments. I have tried light therapy and different antidepressants and neither were helpful. I did have luck with extremely high lux lights, such as photography lights, but they are dangerous to burn for extended lengths of time. Thanks to a doctor in Georgia that was willing to try unusual drug therapy for SAD I was able to find a medicine that is effective for me, however it’s extremely addictive and can cause other health problems. Fortunately, I’ve never shown a dependancy on the drug and have been able to stop it without troubles, so my doctor here was willing to let me go back on it for the next 4 months. The best part about it is that it doesn’t take several months to be effective, it will start to be effective almost right away. I can’t wait to feel normal. Or normalish anyway.
I have been reading other posts from women after bilateral mastectomy that also get hit with depression. I also read a doctors letter stating that mentally it’s like an amputation. I think that is the biggest reason that some of us blog and share about this…because even the most wonderful people in our lives don’t always understand what we’re going through, so we ‘talk’ to each other.
So tomorrow I start my new medication. Do you think I’m crazy for sharing this? I think it’s important, because I get the private emails from women that are having a hard time dealing with their post surgery bodies and minds. So again, don’t give up. You are not alone. We all fall down. All of us. But what’s important is that we get back up. And if you can’t get back up on your own, just reach out, you’re not alone.
And turn them into something good
Take all my preconceptions
And let the truth be understood
Take all my prized possessions
Leave only what I need
Take all my pieces of doubt
And let me be what’s underneath
Courage is when you’re afraid,
But you keep on moving anyway
Courage is when you’re in pain,
But you keep on living anyway
We all have excuses why
Living in fear something in us dies
Like a bird with broken wings
It’s not how high he flies,
But the song he sings
Courage is when you’re afraid,
But you keep on moving anyway
Courage is when you’re in pain,
But you keep on living anyway,
You keep on living anyway
It’s not how many times you’ve been knocked down
It’s how many times you get back up
Courage is when you’ve lost your way,
But you find your strength anyway
Courage is when you’re afraid
Courage is when it all seems grey
Courage is when you make a change,
And you keep on living anyway
You keep on moving anyway
You keep on giving anyway
You keep on loving anyway
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