Two years later....

Wow. I cna't beleive that I have been away so long. A lot has happened since my last update. I noticed that I still had a asymmetry in my upper abdomen and so I tried theraputic massage. My doctor thought that it may be fluid trapped in a pocket. While it was relaxing, it didn't do anything for me. I then tried physical therapy. The therapist told me that it was actually the muscle that was bulging and that I had diastasis recti, or a  separation between the two sides of the rectus abdominis muscles.

Just after my one year update, I consulted with a general surgeon regarding these issues as well as weakness in my lower abdominal area (again) and we decided that the best thing to do would be to go back in the original site and do an overhaul. The general surgeon suggested that he work with my plastic surgeon since he had done the other surgeries and knew what had been done. So, a day before my birthday, I went in for the surgery. Believe it or not, I was excited. I wanted to fix it all and move on. I was tired of looking funny and being in pain. I stayed overnight and left on my birthday, hopeful that this would be it.

But it wasn't.

I followed the doctor's instructions. To a T. I was convinced that I had done too much previously or I had somehow caused all of this each time, Again I had drainage issues, seromas, etc. About a month and a half later, I was able to return to work. I still had drains in, but I really wanted to get back to a normal life. I did eventaully get there. A few months later, I was again noticing a large disparity in the way my abdominal area looked. It literally looked like a roller coaster. One small bump on the lower left side, a large dip and then a big hill on the upper right. It felt weird too. I could feel the mesh under the muscle, but I also felt a funny "bubble" that sat on the top of the large bulge. I decided to see if a different doctor could answer what it was. I was hopeful that he may be able to explain things and fix it. I know..... another surgery ?!?! Really ?!?! He did explain that it was just how it was healing with scar tissue and basically there isn't much that he could do. Going in again may not be the best idea. The way he put it was that with each surgery, you run the risk of damaging the muscles even further. To say that I was disappointed was an understatement.

I had gone through all of this stuff and nothing had worked out how I wanted it to. Of course, reducing the risk of breast cancer was some consolation, but I was feeling pretty low. It was depressing. I hated how people asked how I was doing and I explained and they gave me that pitiful "Oh, poor you" look. I didn't want anyone's pity, I just wanted to feel and look normal again. I looked back at pictures that I had taken right after surgery and it literally made me cry. My body had been through so much trauma ove the past two years and looked NOTHING like that. It looked so much worse. Uneven, bumpy, lumpy, gross. Losing a little weight didn't help either, it just accentuated the deformity.

So, that's where I am right now. Not happy with how I look, but dealing with it. I am not sure what my next course of action is. I am going to give it a little more time and maybe I'll see what my options are in 6 months. I am not comfortable wearing form-fitting shirts that I was hoping to wear again. Now, I wear tops that are a size too big so that they do not cling to my lump. Unfortunately, they hang loose on me and I look like I am playing dress up my Mom's clothes. When I do wear something a little bit tighter, people ask if I have lost weight or remark on how much smaller I am. I don't want to have to explain why I wear larger shirts to cover my stomach. It's embarrassing.

Maybe it doens't look as bad as I think, but I am my own worst critic. Someday I'll feel good about my body again. Just not today.

I don't do sit ups anyway !

I always thought that it was kind of funny when the doctor would explain that the "sit up" muscle would be cut during a TRAM Flap surgery. I would joke everytime "Well, I don't do sit ups anyway, so I will be fine." Ha ha ha.......
Unfortunately, that muscle is used for more than just doing sit ups as an exercise. After two years, I am just now finally getting back some use of the rectus abdominis muscles. For example, it is not easy to just sit up in bed or get up off of the floor. I tend to roll my body into the desired position. I call myself a turtle because that is how I feel if I end up on my back. Either I call for one of my kids to give me a hand or I kind of rock myself to one side and hope that there is something around that I can use to pull myself up.
It has gotten better with time, but it will never be as easy to move around as it once was.
In all fairness, I have gone through MUCH more than the average TRAM Flap patient. Not everyone will have the same opinion or lack of mobility that I have experienced. I just wish that I had been a bit more informed about how much you do rely on this muscle and that it is not just for exercising, as most people assume.

One year later.....

So, it had been over one year since my mastectomy. When I decided to have the surgery, I thought for sure that by this one year mark, I would have put all of this behind me and moved on with life. Unfortunately, it has not been that easy. This year has been very difficult. Emotionally, physically, financially.... This year has been very rough. I know that I should be happy that I have greatly reduced my chances of getting cancer. Don't get me wrong, I am VERY happy to have that on my side ! But it has been a struggle for me to try to stay positive and see the good in all of this mess.

Would I have the TRAM Flap surgery again ? That's a tough question. I know that what has happened to me this year could not have been predicted. No one could look at me and say "Your muscles suck, don't do this." LOL So, rather than dwell on the negative, I try to see the positives of this situation.

1. I think that having the surgery has helped me to take better care of myself. I am never going to have another chance to get a tummy tuck, so I need to be more careful about what and how much I eat. I would love to exercise, but I have been afraid to do anything because I don't want to irritate the muscles or make them pop even worse.



2. My family is amazing. Of course, I already knew this, but you really depend on others when you are in this situation. You have no other choice. My husband was there with me every step of the way. Taking me to appointments, making me take pain meds when I tried to tough it out, keeping the kids quiet so that I could nap, urging me to go see the doctor when I didn't want to admit that there was something wrong. My kids are great too. They have really grown up and been a great help. Having my parents close was also a huge help. Picking kids up from school, babysitting during surgery and appointments- I couldn't have some it without them !

3. YOU are your own advocate. If you feel like something is wrong, do not let it go ! You know yourself better than anyone. If you feel like something is off or doesn't look right, talk to your doctor about it. If you don't get the answers that you are looking for, ask for another opinion. I learned that you can't be worried about hurting someone's feelings. This is your body, your health and you are in control. Don't let anyone talk you into doing something that you are not comfortable with and don't take no for an answer if you think that something is not right. You are important ! Don't diminish how you feel or your opinion.Trust your gut. If something is bothering you, tell someone or keep asking questions until you get an answer.


4. Do your research. I thought that I had done my homework before having the surgery. I had read just about everything on the internet about TRAM and basically thought that I could perform the surgery. Ask questions. Talk to others who have had the surgery. Read blogs and books by others who have been through this. A doctor or nurse can give you an idea of how recovery will go, but they have not lived through it.

5. Sometimes things will not go as planned. That's ok, you just have to figure out what's going on and make a plan to get through it. I was pretty naive to think that things were going to go 100% perfectly and I would be fine after a month. Everyone is different and recovery will vary, but expect some bumps in the road. If things go as planned, awesome. If not, you will not be so discouraged.

6. Maybe all of this happened for a reason. I am a true believer in this one. If my experience helps one person, that's a win for me. It makes all of this crap a little more bearable. I hope that someone, somewhere finds this information useful.

So, would I do it all over again ? Yes. I would. This cruddy one or two years of my life is worth knowing that I am safe. If I had not had the surgery, I would live in constant fear and that is no way to live. Would I have a TRAM ? That one is a little tougher to answer. I would have the surgery, but I would ask more questions and I would be more persistent when I thought that something was wrong. It's easy to see all of this now, not so much when you are living it.

Wow..... It's been a while !

I just realized that I haven't posted in quite a while. Did you miss me ? :) I am happy to say that everything turned out well with the biopsy. No cancer !!! I have just been busy with kids and work and everything else that life wants to throw at me.

While I am so happy that there was no cancer, my breast surgeon saw me for a recheck and referred me to one of her associated to take a look at my abdomen. It is still quite lumpy/bumpy. She also sent me for a CT scan to see if we could determine what exactly was going on. I met with the surgeon and liked him immediately. He explained that my lower bulge was likely due to all of the trauma caused by the constant opening and reopening of that area. The muscle may or may not bounce back. So basically. I am stuck and just need to wait and see if it will repair itself. He was more concerned about my upper abdomen. Remember how I had that bulge right under my ribs ? The ER doc said cellulitis. My PS told me that it was fat/fluid. The new doc said that it was more likely a muscular issue. He thinks that it is most likely a hernia inside that keeps popping out when I strain or use the muscle. So what does that mean ? Another surgery. Seriously.

The doc plans on going in my original incision and then they will go up and work on the upper issue. He is going to go in there to see exactly what the problem is and stretch the muscle back or add mesh across my upper abdomen to strengthen the area. He is also going to check out the lower area and see what's going on there.

I kind of knew that this might be coming, so I am not totally surprised. Did I want to avoid it, yes, but I do not want to look like this any longer. I feel like it is shallow to say that I am not happy with how I look, but the reality is if I don't fix it, it will get worse and this will have to be done eventually.

So, that's where I am at. Fun times :/