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/
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
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.
Two and a Half Weeks After Repair and Reconstruction-Graphic Content
Today was a another day of rest. I felt a little guilty staying in my pj’s and napping all day, until I realized I’m only 2 and a half weeks from surgery. Considering how awful I felt after surgery, I can’t believe I feel as good as I do.
My first day back at work didn’t go so great, I ended up only being able to stay for a little more than an hour of my first 5 hour shift. I came back home and slept for a few hours and went back for my last 4 hour shift. I ended up taking my pain meds that night. Each day got a little better.
I had my week post-op appointment, my sutures were removed and I had a brief exam. I didn’t watch the sutures being removed because, as we’ve already established, I’m a chicken. I was hoping to have the remaining bandages removed, but they have to stay until they fall off. Everything looks good so far. I asked the doctor “What’s next?” and he replied “Now we wait and see if this works.”
I did ask him a few questions. He thought I was kind of dorky (I am), but after he laughed at me I explained that these implants are so different than my last ones, so I’m trying to figure out what the new ‘normal’ is and get familiar with my new body. Basically we established that my swelling is mostly gone. The muscle was pulled away from the lower part of my breast bone to make room for the larger implants, which then puts the implants closer together and look more natural. I still have to be very careful, it will be very easy for the muscle and Alloderm to tear again and I don’t want to go through that painful repair again.
The pain was worse than I expected, but the hardest part turns out to be this long recovery process. There is so much that I can’t do, and I’m constantly reminded of the surgery whenever I try to do something that could hurt me. Grocery shopping is a great example, I can’t lift dog food or heavy bags, and have to be careful unloading from my car. I can’t push the vaccum cleaner, and bending forward to do things like unload the dryer is painful, and even when it’s not painful, it could still cause problems with the repair. These are things I have to be careful of for maybe 6 months.
On the funny side, each night when I get home from work I practically run into my bathroom, pull up my shirt and lift off my bra to check to make sure everything is still in place. I’ll check again before going to bed to make sure that my left side is still where it should be.
I have to say that my spirits aren’t what they usually are. I try very hard to seem normal and upbeat, but it’s a struggle. I’m tired. I’m emotionally worn out. I’m constantly reminded of things I can’t do, and if you know me, you know that I’m usually asking “what’s next?” or “why not” instead of having to say ”I can’t”. I hate feeling, and actually being, weak.
Would I do it again? Absolutely. I see the photos of my breast friend Tammy as she waved at the camera last week during her last chemo appointment. I can’t imagine how difficult her path has been, and all of my other breast friends that have had to face cancer. I have done what I can to avoid there ever being a photo of me from chemo. I cry for them, these strong and amazing women and the things they have to go through. It makes my complaining about reconstruction seem trivial.
So now I’ll finally answer the question everyone has been asking me: “How does everything look??”
Two and a half weeks after reconstruction repair
Two and a half weeks after reconstruction repair
Two and a half weeks after reconstruction repair
Two and a half weeks after reconstruction repair
And for comparison, this is a photo from about the same after the original implant swap:
Looking at the two photos, it looks like the took my boobs off and put them back on in the right place. And I think that the original implants look larger than the new ones, probably because of the placement. But the new ones are bigger around, so they fill in the the strange areas at my breast bone and under my arms. The tail of the breast was recreated by the larger implants instead of by fat transfer. I’m so thankful I didn’t have to go through the fat transfer process.
Thank you all for all of the wonderful emails and for your thoughts and prayers. I’m looking forward to next week, to see what happens next!
One Big Difference Between Silicone and Gel Implants
I did forget to mention the biggest difference I have noticed between Silicone and Gel implants. All of you ladies that have silicone are probably familiar with the weird cold flushing feeling through your chest when you drink something cold…I’ve had it mentioned to me several times by women that had reconstruction with silicone. I don’t get that feeling at all with Gel. I have noticed since my surgery last week that I have lost some of the feeling I had gained in my breasts, so maybe I just don’t feel it yet, but I remember feeling it right away with the silicone implants. Just thought I’d share.
Back To The Land Of The Living-Graphic Content
Happy 2011! I can’t believe how difficult but rewarding 2010 turned out to be. One year ago I was getting ready for my bilateral mastectomy surgery, preparing to be finished with reconstruction by June. I never would have guessed that one year later I would be in bed, recovering from additional surgeries, still at least 6 months from the finish of my reconstruction.
I know I’m fortunate, though, because I have met and found so many wonderful people during the last year. And it is so wonderful that we are all a support system for each other.
I’ve had other wonderful things happen, like my involvement with NORRA and becoming a part of the NORRA family. NORRA and Team Courage have been 2 of the main things that keep me going, after of course my family and BFFs.
Today is my last day of ‘recovery’, I’m able to go back to work tomorrow. Although if you’ve gone through breast surgery you know that recovery tends to go on and on and on. I had my second post-op appointment today and the doctor said everything looks good for now, but we just have to hope the stitches hold. Wearing a bra 24 hours a day helps keep gravity from putting pressure on the stitches, and will hopefully be enough to allow everything to grow together properly. It will take several months for everything to heal and for the muscles to attach properly. Until then I can have ‘life as normal’ except no bouncing under any circumstances. That makes me giggle. As if reconstructed breasts could bounce! I get the idea, though, no horseback riding, off roading, jumping, or jogging.
My last surgery was one week ago tomorrow, and I’m feeling better today. I still look washed out and not so great, but I feel better. Today is the first day I can stand and sit without hurting. The places where the Alloderm was stitched to my ribs is the worst. Today is the first day that those stitches don’t burn and hurt constantly. That’s really where the feeling of being stabbed by a rusty screwdriver was the worst. The spot on my breast bone where the muscle was cut away to relieve pressure is still very swollen and tender. For the last week I’ve heard a very disturbing gurggling noise when I move certain ways, I guess it’s the blood and fluid that would normally come out through a drain. It’s loud enough to hear standing next to me, it sounds like a loud tummy growl, but it’s from my chest. That really grosses me out. I haven’t heard it today, so maybe most of the fluid has been absorbed. I won’t miss that at all.
My last implants were silicone, my new ones are memory gel. I’m still too swollen and painful to really tell a difference, but they feel softer and more real at this point. The difference between the 400 cc silicone and 550 cc gel implants is not drastic. After the swelling is down I may still wear the same size bra as before. But I can tell the biggest difference on the top and the sides of my breasts. The most disappointing aspect of my last implants was that when looking at me in a bathing suit or tank top, the sides of my ribs under my arms were wider than my breasts, which made my breast look like they were just stuck on. My last plastic surgeon called that area of the breast along the side and under my arms the tail of the breast, and had wanted to fill it in with fat transfers. My new surgeon said it could be filled in with a larger implant. Agian, I’m not sure how it will be after the swelling goes down, but for now I look much more natural. I am very happy with my results so far, and I’m thrilled that I’m not also recovering from lippo because the pain from the repair of the torn muscle and fallen implant was awful. Much worse than the implant swap. It was very similar to the pain following the mastectomy, at least on the damaged side.
My dog, Cesar, and my cat, Callie, have been by my side non-stop. And sometimes closer, if possible. I spent the last week sleeping, with an afgahan made by my great aunt and a quilt made by my grandmother before I was born. This is how Cesar tries to make things better.
As for results so far, this was a photo taken 5 days post op from my first implants….
Implants 5 Days Post Op
This is a photo 5 days after my repair and new implants…
5 days post op 2nd implant swap
So, there you go! Hopefully I will manage to take it easy over the next 3-6 months and that this repair will hold. I don’t know what will happen if it doesn’t, if that means I won’t be able to have another reconstruction. I did find out that I will eventually be able to off road again, and I will be able to do things like kite board like I dream of doing. So that’s great news. I just have to keep my body parts from falling off for the next 6 months. Keeping all fingers crossed!
I hope that 2011 is a wonderful year for you all, and that you are all as happy and healthy as you can be.
Who Kicked Me While I Was Sleeping? Graphic Content
The word for the day: UGH.
I’m home from the hospital and alive and kicking. Not really kicking, but I like to pretend I’m tough. And it feels like someone, or maybe a horse, kicked me in the chest.
It was very strange going to the hospital and not having to drive for 3-4 hrs first. It was actually very nice. I was nervous at first, because this procedure was being done in the same hospital where I had the awful experience after my blood clot. But the staff was wonderful and I never had a moments concern.
There were some things that were different this time, silly enough one of the biggest was the paper gown. I hate going to surgery becuase I always freeze on the table. This hospital had gowns with little hook ups for warm air to be pumped into to keep me warm. The gown also went all the way to my feet and had a little pouch for your hands. It was pretty nifty.
The doctor came in and drew his little marks on me so that once I was laying down he could tell where everything should be. He drew a line under the left side, and I said “But you’re going to bring that side up, right?” and he said he couldn’t promise, but he was going to try. That really stressed me out, but what else could he say, really? I had talked to the doctor that would be putting me under and told her about reactions I had before and she decided to just give me half of the first medicine to knock me out, to see if I was ‘a light touch’ because she thought maybe I didn’t need as much to put me under as most people. This lead to a funny experience. I was still awake when they got me into the operating room. My nurse asked me what I do for a living, I told her I have an off road race team. I could hear people in the room “What???” , everyone sounded surprised, but one of the nurses told me her dad has a 1600 buggy and races Baja too. Then the lights went out and I was gone.
When I woke up, I was immediately aware of 3 things. The first was that I could tell my implant wasn’t hanging down any more. The second was that he had done a lot of repairing because I hurt like hell on the left side. My right side doesn’t hurt at all. But my left side feels almost like it did when I came home from my mastectomy. It hurt a lot. No, more like A LOT!
The third thing I noticed was that there were cows looking at me from behind the door of my bathroom.
The nurses were very sweet and tried to keep my pain down. But then I knew that if they kept giving me medicine I wouldn’t be able to get up, and I just wanted to go home. So I started turning down the shots and injections and choked down a graham cracker so they would let me go. I arrived at 8am and left at 2:30 pm.
I have been pretty out of it ever since I have been home. I did get up this morning to go to my post-op visit, but it seems like a dream now. I do remember some of the important things he told me.
- I must wear a tight underwire bra basically 24 hours for the next 3 months
- I can lift only my toothbrush for the next week or so. I can only use my arms to brush my teeth and wash my face.
- I can’t shower until Friday
- This repair my not last forever
- I need to take it very, very easy for awhile and protect my chest very much.
I expected this repair to hurt, I expected it to feel like it did after the expansions. But it hurts much worse than that. He told me that the muscle and the Alloderm had both torn. He had to cut the pectoral muscle again, where it attaches to my breast bone, so that it would relieve some pressure and hopefully not tear the Alloderm again. He had to attach the Alloderm to my ribs to try to keep it down and in place. He said I might get those hollow places above my chest again, but there’s not really anything that can be done to prevent it.
I feel much better having the implant fixed. It was starting to hurt a little, the way it was pulling on my muscles and moving around. It feels great to have it secured. As long as I am laying down I hurt very little, but when I sit or stand up I can feel the pressure where the Alloderm is stitched to my ribs and where the cut was made at my breastbone. That’s going to take the longest to get over. I’m also a side sleeper, and it was hard not sleeping on my side after my other surgeries, but I don’t think you could pay me enough to sleep on my side right now. I feel like I have been stabbed with a huge, rusty screwdriver. There’s no way I want to move in a way that might hurt.
So, I feel like I’ve been kicked and stabbed, but I feel better. It’s a huge relief on my mind to not have that implant hanging down any more. HUGE RELIEF. It was really bringing me down.
So, here are 2 photos to compare…the first one was the day after my implant swap. The second one was taken this morning. Oh, and YAY! NO DRAINS this time!
1 Day Post Op with Drains
1 Day Post Op After Repair of Failed Implant
I can take the bandages off on Friday, then there will be steristrips like before that I will leave on for awhile. I go back to the doctor on Monday.
Thank you all for all of your thoughts and kind messages, I couldn’t make it through without all of you!
The Reason I Avoid Mirrors-Graphic Content
10 days until my next surgery and I’m busy trying to get ready…getting my prescriptions filled (which is harder that you would think), getting my lab work done, blah blah blah. I’ve been living in a great state for that last few days, excited that I’m going to have my repairs done, that I don’t have to have liposuction, that my recovery will be weeks instead of months. I really was very upset about another long recovery…I’m tired of hurting and not being able to function at 100%, and basically of being a patient.
I’ve had some interesting conversations lately with some of the girls at work. One in particular is very opposed to reconstruction. She says she wouldn’t care if her breasts shriveled up and went away (interesting psychology there too, huh?), but if she had a mastectomy she would never go through reconstruction. We argued our positions a bit, and I said “Do you want to see photos of what a person would look like without reconstruction, or after?” She said “No, I’ve already seen my friends breasts, she had implants, it’s all the same.” At which point my head spun around and almost popped off of my body, but only on the inside. On the outside I smiled, I’m sure it wasn’t a pretty one, and said “If you REALLY want to piss me off, keep talking about how this is remotely like implants.” The girl with implants, a nurse, was standing there listening. She’s actually been a big supporter of me. Actually, a lot of people were listening, it was one of those ‘moments’. Then someone made a joke and the moment passed and I felt like an ass for getting sucked in to her opinion. Here I am, telling my breast friends how important it is to let go and to understand that we can’t get mad at others for not acting the way we want or need them to, and yet I get sucked in too. It’s easy. We’re so vulnerable and want to be accepted and it does hurt when people say stupid things. Sometimes we want just a little bit of kindness and instead get a stupid comment, or worse, nothing at all. I think that this part of my journey is the hardest so far. But I look fairly normal in clothes, and I try to always have a great attitude and not show my worry or stress or fears. Most people no longer ask how I am, or how I’m doing. It’s okay, I understand life goes on, but some days are just harder than others.
I’m excited as I move forward, but frightened too. I did talk to my plastic surgeons office about the Alloderm…he says that the surgery is still possible, but that there is often a lot of scar tissue when Alloderm is used and he can’t be certain that the shape of my new breasts will be as good as he hoped. He’s going to try, and he won’t know until he gets in there, but he’s going to do what he can. I’m going to be deformed either way, I’ll never look natural, so I guess it’s all relative, hmm?
I have been avoiding looking at myself since the implant swap in November. Looking at myself simply takes the wind out of my sails, it’s very hard to see what I look like at the moment. And I think that with all my moaning and groaning about how unhappy I am about my implants and reconstruction so far, it really doesn’t mean anything if you can’t see what I see. So I thought I would post additional photos, taken tonight, so that you can see exactly what I don’t want to look at. It hurts me to look at these photos.
You can see very clearly here the problem. You can see that my left side (on the right) is much lower than the other side. You can also see that there is less breast tissue above the breast, making it look similar to the strange ‘stuck on’ look of the expanders. Underneath that side, you can clearly see where the implant has slid out from under the Alloderm after my stitches let go, and the way the shape of the implant is being deformed as it gets squeezed through the opening between my abdomen and the Alloderm. Yay me!
It’s very easy for me to freely move the implant around. You can also see that if the implant were in the correct spot, my scars would be more even, although the hollow spot above the breast may always be there, even after the next surgery. The flash really shows the scars and stretch marks, but they aren’t so visible in real lighting.
Here you can see that the ‘dog ears’ on my other side are healing and going away, and that breast doesn’t look so square any longer. My left side still has ‘dog ears’ but will be corrected during the next surgery.
None of this hurts, except to look at, and I feel fine physically, but this is kind of difficult to see. It’s a worry, to think of another surgery, and wonder if anything else will go wrong or if this surgery will be one of my last. I’m really hoping this is one of my last. I’m really hoping that I’ll get through this one with flying colors.
On the good side…my bloodwork is all finished so no more getting poked by needles for an entire week! My labs are all in, for both my surgery and all of my genetic testing for everything else (not BRCA tho). My physical is finished and was painless. My doctor did address my current medication for SAD and made a change, so I’ll be switching meds tomorrow (I haven’t been taking my other ones). I’ve re-joined my gym down the street and can’t wait to start working out again. When I had my first surgery in January I weighed 135 pounds. Today I weighed 143. I really want to weigh 120-125 when I go to Baja in May. We’ll see! It’s only a little over 5 months until the Mexican 1000 and NORRA is making headway on getting prepared. My friend Token didn’t disappear after all, and my son has worked hard and pulled all of his grades up into a higher average and has relieved some stress around the house. This weekend we’re doing Christmas shopping, what little we’re doing this year, but it’s still fun. So I’m determined to look at all the good stuff, and to continue to avoid looking in the mirror.
Thank you all so much for all of the wonderful and kind words of support. I am looking forward to what 2011 brings. Love to you all.
And just in case you’re wondering, here’s the different stages so far…
Before Mastectomy
Expanders After 9 Months
1 Day Post Op with Drains
Implants 5 Days Post Op
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!
Another Countdown
So here I am, 15 days away from my next surgery. Wow. How many times have I started a blog with similar words?
Yes, I’m a little tired of facing surgery. But I have so many things going on right now that it’s almost easy to ignore that I’ll be having surgery again.
Let’s see…oh! Today I had my IMT! That is an ultrasound that takes a look at my carotid artery to check out my current risk of heart attack or stroke. I know, I seem young, but it’s part of a program I’m going through with my doctor. And my dad died at 53 of a brain aneurysm, my sister had a heart attack at 50, and my brother had a stroke at 50. I’m 38, and it’s not too early to start seeing problems that could put me in their shoes. It will take a few weeks to get my results back, but the technician was pleased to not see any of the ‘goobers’ she frequently sees where the carotid artery splits…one side directing blood to the brain and the other to the face. That ‘v’ is where she usually sees clumps of plaque that can indicate problems. I was very happy to see mostly wide open passageways on the ultrasound screen.
Tomorrow I have my last ‘second’ opinion. It’s with the surgeon that is from the Mayo Clinic, the one not everyone likes but that is a remarkable surgeon. I look forward to hearing what he has to say, and to learning his opinions about nippple reconstruction. I do honestly dread one more surgery (and it may be more than just one), but I’m really looking forward to getting this part finished. I hate looking at myself and seeing this fallen implant. I want to move forward, and I feel that I’m stuck in reverse.
Thursday I will have blood drawn for more of my heart testing, as well as the dreaded YEARLY EXAM that all women hate. I’m not looking forward to that, but at least I don’t have to have my boobs checked, right?
The week of Christmas should be quiet around here, just a regular work week. The last quiet, painless week for awhile. Then I’ll travel to Denver on the 28th for my pre-op appointment, and then return on the 30th for my surgery. I did cancel the nipple reconstruction, so the surgery, at this point, will be to repair the fallen implant and the fat transfer from my legs and abdomen to my breasts to try to make them look more ‘normal’. My appointment tomorrow may change what I actually have done, but for now, that’s the plan.
I want to thank you all that have written or posted. I’m sorry I haven’t been able to reply like I should. I can’t believe how behind I am on everything, and how much I have trouble doing the smallest things when I don’t have a time frame scheduled. I am trying to stay upbeat and get things done, it’s just been a big challenge for me. I’m trying to do better! I can’t tell you how much every single email and post means to me, it means more than I could ever say. All of my friends and supporters, you help me make it through each and every day, and I am so thankful for you.
Wise Words From a Psychiatrist About PBM
Today I had a wonderful ‘visit’ with a psychiatrist. He’s helping me personally, and also helping me put together a program for women facing and recovering from breast reconstruction. Helping women like me cope with the psychological effects of recovery. It was very informative, he told me that the psychology behind the decision to have prophylactic bilateral mastectomy is very interesting. He said that it obviously shows a strong woman, a woman that is willing to face the fear and pain of the surgery and reconstruction to prolong her life. It also shows that the woman is thoughtful of her health, willing to go through the surgery and reconstruction to stay healthy instead of taking the chance that she won’t get breast cancer. It also shows that she is more concerned about having a long healthy life than she is about how she looks, and is willing to give up her breasts to live a longer life. I think this is very important for the women that are faced with the comment “it’s just like having implants”, because I think the most hurtful part of that statement ISN’T the suggestion that we won’t face more hurt or emotions or trauma than a woman getting implants, but that we are doing it because of how we want to look. Those people that say those things have no idea that we will never look like a ‘normal’ woman again, and that the size of the implant has nothing to do with replacing or making better the breasts we had prior to surgery. There is simply no comparison between our bodies before and after surgery.
I mentioned to him that many of my ‘breast friends’ seem to be going through a little depression. He explained it very well in that we put so much of our energy and emotions into getting through the surgery. We create possitive energy for ourselves without even realizing it, just to get us through, because although we have support from our family and friends, no one really knows how much it takes just to get through it. Once we are through the mastectomy and are facing the delays and trials of reconstruction, we hit a low point because we have expended so much energy getting through to the recovery, just surviving and being there for our family and friends. Although we need them, we often end up having to put on a brave face for them, and it’s just sometimes more than we can do. We fall into a depression, where we need to sleep and withdraw and recover the energy that it took us just to get through the surgery. Not to mention the grieving process, because there is a grieving process as we lose a part of our body, and it doesn’t mean we’re shallow or vain to mourn that loss.
As he explained that to me I felt a light bulb go off! That’s exactly right! And it immediately brought to mind my little break down at Scorpion Bay in Baja after finding the lump that lead to all of this. I remember being devistated, and crying and crying, not because of what I faced, but because it was the only time I felt that I could. Once I came home and started my journey for real I needed to be strong for my family. I couldn’t break down and be devistated in front of them, if i did, who would get them through it?
I think having a ‘group’ would be great. I know there are a lot of groups out there talking about breast cancer, or other types of cancer, but I really feel that my focus with my own projects should be reconstruction. And luckily he’s willing to help out as well. So now I’m putting together a little session for women in the area that are facing this journey too. I can’t wait to get started.
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 Second Second Opinion
Another adventure filled day in the life of Reconstruction!
If you’ve been following along, I recently had a set back when my stitches popped and my implant started to slide down my abdominal wall. I visited Dr. M, my internal medicine doctor, to get his opinion on the progress of my reconstruction as well as the drop of the damaged side. Dr. W, my plastic surgeon, confirmed the damage to my reconstruction of that breast and let me know that he is very happy with my reconstruction at this point. I followed Dr. M’s advice and made sure to express my unhappiness to Dr. W’s, canceled my appointment to have nipple reconstruction until I decided exactly what type of reconstruction I want to have, and I made appointments to get opinions from other plastic surgeons.
Today I had an appointment with a new plastic surgeon. It was interesting and frustrating. I don’t think I can look to anyone else to give me the answers I’m looking for.
Before I arrived, I wanted to make sure in my mind that I knew what I was hoping to get from the appointment. I’ve had 2 doctors that I trust explain to me the failure in my left breast, and I am confident that this will be repaired without trouble. My second opinions aren’t in search of repairing the current trouble. I know that is going to work out. I am looking for information about nipple reconstruction and the current shape and size of my breast. Is it realistic to believe that Dr. W is correct and CAN increase my size by using fat transfer? Are there doctors in my area that will do skin or labial grafting for nipple reconstruction? What are their opinions of what options are available to me at this point in my reconstruction.
Let’s call today’s doctor Dr. D. He was young, probably within 5 years of my age. (For the record, Dr. W about my age, Dr. M is just a few days younger than I am). It hasn’t been intentional that my doctors are all men or all close to my age. Don’t know if it even matters, but wanted to mention it.
Anyway. He was fairly friendly. He did tell me right away that he’s a very busy surgeon. I tried to explain to him why I was there, and he kept stopping me and telling me himself. He was usually wrong. Maybe we just look at things differently. I started by giving him the basic history, and when I told him some stitches popped and the implant is falling he said “It was your fault? I’m going to stop you here. Did your surgeon tell you it was your fault?” I said “Well, no, but I never asked. It doesn’t really matter who’s fault it is, does it?” He tried guessing my surgeon’s name, but my surgeon isn’t local. When I told him who it was he said he hadn’t ever heard of him (almost every doctor says that about other doctors, every doctor I see, as if I care). He didn’t tell me who’s fault it was either. I really don’t care. I just want it fixed. But that wasn’t why I was there. Do I not speak clearly? He was assuming that was what I was there for. I tried to explain again. He stopped me again and gave me a drape and left the room.
So I put on my drape and he came back in. He looked at the left breast and pushed it around a bit and said it was a simple repair, they would just take the implant out, restitch the muscle and put it back in, or put in a new one. I know that part already. So I tired to explain it again, and he stopped me, and had me stand up.
I stood up, he sat down and I asked about the fat transfer. Before I could explain what I’m looking for, he said that fat transfer would fill in the top and the sides that are not ‘normal’ looking. I finally asked if it’s realistic to think that a fat transfer can increase the overall size of my breasts. He said he really didn’t know, it depended on how good my other surgeon was.
Well, hell. Thanks.
He then, I am not kidding, unzipped my pants and started pinching my abdomen. He asked why I didn’t do a DEIP flap procedure. I answered “Because I understood that I would have ended up with about an A cup because I don’t have a lot of abdominal fat, and the recovery time was so long”. He said “Well, that’s true.” Ok, well if I’m here expressing that I’m unhappy with my size, why would I want to be two sizes smaller?? Hmmm.
He had me follow him to his office. He pulled up a photos of a woman before mastectomy, with expanders, and after implants. He was showing me how much better she looked at the end (she had an awful augmentation before finding cancer). He asked me if I thought she looked better than I do. I said she’s just different, because she was tiny, probably 100 pounds, and her implants were small, probably a B. He agreed that she was very petite and her breasts were much smaller. Then he pulled up a photo of a woman after regular augmentation and asked me how she looked. How does this apply to me, exactly? I said she looked good. He said “Yes, but there’s a difference in her results and what you can have. Do you know what?” and I said “Well, she has breast tissue and I don’t. I won’t ever look like that.” He said “Well, that’s true”.
Thanks. I again expressed that I’m there to find out what I can expect from a fat transfer. He again said he really didn’t know. Then he said “Look. You’re fairly young. You obviously take care of yourself and create a good presentation of yourself. Your results are a B+ or A-, you should be happy.”
How many things are wrong with that sentence???
Then he said “Look, if you really want to have bigger implants, call your doctor and ask him to order bigger implants. He’ll say no, but you can ask. Go have your repair and your fat transfer, then come back and see me about the nipple reconstruction.” He added “It’s really unfortunate that you live in Glenwood, the home of the outrageously large implants.” I said I’m not looking for outrageous, I just would like to be able to wear a dress. I wanted to explain that I can’t wear dresses because my top sizes are smaller than my bottom sizes, so most dresses don’t fit. He stopped me by saying “I know, I know” while closing the door and leaving my room, headed out to catch a plane to his vacation.
Yeah, I’ll be making that appointment tomorrow.
Can I have one more man tell me I should be happy? I like that about as much as I like hearing my surgeries were just like getting implants.
I have to say that for the rest of the day I was pretty angry. I’m sure it’s partially because I’m disappointed, and still at a loss for direction as far as nipple reconstruction goes. But the anger was a relief from the fear and depression I’ve felt for the last several weeks. Maybe going today was great because although I didn’t get the answers I was looking for, I was moving in the right direction and taking control in some little way of my results.
I still don’t know what to do about my nipple reconstruction. Oh, did I forget to mention that today’s doctor stuck his hands in between my legs while I was standing in front of him and I mentioned skin transfer? What the hell?? Yes, I know where the skin comes from. Sheesh. He also told me that although it looks great to go that route, it’s totally old school. Oh, and the photos of his reconstruction….she had on the stick on nipples I posted about a few weeks ago. Charming.
There’s no way I’ll be going back to today’s doctor. I did receive a great reply today from Gretchen about her surgery and implant size, and I’m going to call my doctor and ask about the implants. He’ll probably say no, but I should try it.
I went to work late, and was venting to my friend Jess during her lunch in the break room. I was still very angry. I mean…angry. Jess suggests that if larger implants are possible, I could always do it later. I explained that once the fat transfer is finished and the nipples are reconstructed, if I have larger implants put in it will be like starting over. The nipples may end up in the wrong place or the tissue may die. One of the nurses I work with was trying to be funny, beautiful Brandi who is very sweet and has huge and spectacular implants. She said “Nipples are very over-rated”. I kind of lost my temper and said “Yeah, you think that. But how about we cut yours off and give you scars from armpit to armpit and you can wake up to my body every morning? You won’t think they’re over rated anymore.”
Probably not as nice as I could have been. I will apologize to her tomorrow. Yikes.
So there you go. I don’t know if I moved forward or backward today, but I moved. I guess that’s a good thing. I really apologize for the tone of this post, and for venting so much. I think I’m really just so surprised at how today went, I just needed to share how awful it was.
Thank you all so much for your posts here and your emails. This will all be funny when it’s all over, right??
I have some great news to share about BFF and a great doctor I have met, and some projects we’re going to do together, but this is already so much longer than I wanted it to be, and totally longer than you wanted to read…if you’re even still with me!
By the way, my blog is now getting between 200-300 hits each day. Amazing that so many of you have helped spread the word about this site and have helped all of us help others. Thank you so much for all that you do to help out all of our BFFs. Thank you, thank you, thank you.
Oh, and in case you’re wondering….I am soooooo not a B+.
Houston, We Have A Problem. (graphic content)
Okay, so it’s no secret that I have delayed posting photos of my new breasts. Normally I am right on top of my photos and videos, but I’ve been so bummed out by the way I look that I haven’t even wanted to look at myself, much less share how I look. And that’s not really the nature of my site, I should have been better and been brave enough to share in case this happens, or is happening, to anyone else.
I have felt that the two sides looks so very different, and have been disappointed that my left side was lower than my right. The shapes were very different from each other. The scars were in different spots and pointing in different directions. It was very hard to look at, and I felt it was because I’m so close to the end that I’m just having a hard time coming to terms with the fact that I’m never going to look normal.
Tonight I undressed for a shower and couldn’t believe how I look. First of all, there was a big circular area that I first thought was a bruise on the underside of my left breast. Then I realized it was a shadow, and that there is a large depression in that area. The area of my chest above the left breast looks skinny, like there’s no fat or muscle and you can see the outlines of my bones there. The left breast is now much lower than the right one, and in looking at it and touching it, it is almost as if the ‘hammock’ that was created by the alloderm has fallen and the implant is falling down inside my skin. I’ve been thinking that for some time, but thought I was just being silly or over-dramatic. But when Jon saw it tonight he was pretty freaked out and immediately started talking about how fast we need to get to Denver.
Actually, 2 days ago, before I noticed this, I scheduled an appointment with a new plastic surgeon to get his opinion of how things are going. I just felt like something was wrong. That appointment is on December 1st, but I’m a little freaked out to say the least. I’m going to see if I can find someone that can see me tomorrow. Jeepers I work with like 15 doctors, someone should be able to see me! But really, they aren’t reconstruction surgeons, so they may not be able to help.
And of course, there could be nothing wrong at all. We’ll see. But I did finally get photos. The problem doesn’t look as significant in the photos as it does in real life, and the lighting isn’t so great so you might be able to tell very much, but here goes anyway….
Photos, 5 weeks since the removal of expanders and the placement of the implants:
So, on what would be your right, you can see a little bit of difference. You can see that the one on your left slopes down from my upper chest to the breast, and the right one has more of the ‘stuck on’ look that the expanders had. Also, you can’t really tell how far down the breast on your right ends, but it’s actually about even with my elbow, and the other side has a defined curve and muscle attachment below it.
From this angle you can see the flatness of both breasts, but you can also see the difference in the way the one on your right looks.
You can kind of see in this photo the depression on the under side of the breast, as well as the kind of half moon shape under my breast-that is actually implant way down there. I can feel it.
This is what the ‘normal’ side looks like (ha ha ha, who would have thought my reality could change so much that this would become my ‘normal’??)
From this angle you can see, especially when compared with the one above, how this breast isn’t as defined, and how much implant is hanging down.
This is crazy. And very upsetting. I can’t imagine this can be fixed without another surgery. Will I have to start all over on that side? Will they have to remove the alloderm if it’s damaged, or can it be tacked up like a muscle? Will I ever look normal again? Will this ever be over???
Ugh. I know you are all sending thoughts and prayers, and I’ll keep you updated as soon as I can find something out. And I’m going to do my best to find someone to see me tomorrow.
Time to Remove My Bandages
My release paperwork showed that my steri-stripes over my incisions could be removed after 14 days. Being a little impatient, I talked Jon into removing them on the night before the 14th day. There’s no way I could do it!!
So he started to pull on one and made a face. He said that there were stitches hanging out. I got nervous and told him to stop.
The following day I called my surgeons office to ask about the stitches after peeking at them myself. It wasn’t really exposed stitches, it was a loop of suture material that looked like fishing line that was about 2 inches long, wrapped in a loop. My nurse said that sometimes they left that ‘tag’ out, but it could be trimmed with sterile scissors without concern. She said that it’s better to leave the steri strips on for as long as possible, but I could remove them if I wanted to.
Well, would I wait?? Noooooo.
So last night I took a bath, making sure not to soak my incisions but wetting the steri strips enough to hopefully make them come off easily. I lay in bed and asked Jon to try again. He pulled the strip off of my left side and trimmed the loop of suture material.
I asked how it looked (being too chicken to look myself) and he said it was amazing. Much better than last time. I peeked again and couldn’t believe it. There was no red line like last time, just a line that looked like a very thin scar. Incredible.
He then started to remove the strip from the right side, which was a little stickier than the left. He pulled it half way across and all of a sudden “Yeeee OOOWWW” flew from my mouth before I even knew it! He looked at me and I said “That hurt!” and he said “That’s good!” meaning at least I could feel something. It was the first time I felt anything in that part of my breast in over 9 months.
He pulled the strip the rest of the way off and I looked down to see how the scar was on that side. That side had a few more little scabs, but for the most part it looked really good too.
I decided I was content with how it all transpired and decided to fall asleep happy. And so I did.
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
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.
Another Fun Note…
Found out today there are glow in the dark tattoos.
Should make nipple reconstruction more fun, eh?
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.
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.
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