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 :/

So, what is a biopsy exactly ?

We have all heard of biopsy and know that it means that your doctor found something abnormal in your exam or mammogram. Scary, right ? Maybe it will be a little less scary if you know what to expect.

When I arrived for my biopsy, the nurse showed me the dressing room and instructed me to put on a gown, opening in the front. I then went to a waiting room for a short time. The nurse came back and showed me to an ultrasound room. She took my vitals and asked about my medical history as well as if I had any allergies. I signed a consent form and then we were ready to begin.

I hopped up on the bed and the nurse positioned me with my arm over my head. The radiologist and ultrasound tech felt my breast for the areas that we wanted to study. They marked the areas with a marker and then prepped the skin. I didn't watch what the doctor was doing with the needles because I think that I may have passed out ! The doctor began with a few small injections of Lidocaine, to numb the area. I did feel the pinch of the needle going in and then there was a slight burning sensation, but it only lasted for a few seconds. Once the area was numbed, the doctor began with the biopsy. Before he inserted the needle, he clicked the needle so that I would not be afraid when the first sample was taken. The sound reminded me of one of my son's toy guns. Each time he inserted the needle and it was in place, he told me that he was going to take the sample, then "Click". Immediately after, he explained that he was removing the needle and there would be a slight tugging feeling. I could not feel any pain, only the sensation of something moving. He did 3 samples in each of the questionable areas.

I was watching the ultrasound screen at first, but once I saw the needle on the screen, I had to look away ! Once we were finished with the samples, the doctor inserted small clips into the biopsied areas so that we would know that these areas had been tested. The nurse pressed down on the areas where the needles were inserted and then put a few steri-strips on. I was then taken to have a "gentle" mammogram to document the placement of the clips. This was a very quick one, only a few views were taken. When I returned to the room, the nurse redressed the area by putting some Bacitracin on the area as well as new steri-strips. She then covered these areas with a large, clear plastic covering (like the ones that they put over IVs).

We went over instructions about watching for heavy bleeding, showering, watching for infection and which meds were ok to take. The nurse told me that I should have my results in about 2 days. Overall, my appointment only took about 45 minutes. Now that I have been through it and know what to expect, it is not as scary as I thought. The most scary  thing is waiting for the results ! Horrible ! :(

Here is a great video about what to expect when you have a biopsy:

The Waiting is the Hardest Part

Torture. Waiting to hear from the doctor is pure torture. Every time the phone rings, I get a pit in my stomach, jump up, run to the phone, and then it is only a telemarketer. Ugh. The nurse from the biopsy said that it usually takes 2-4 days for the results to come back from pathology. Of course, that puts me into next week. She said that I would probably hear something by Friday, so I am waiting on pins and needles. Trying to remain hopeful, but also trying to be realistic. I can't wait to get the phone call so that I can stop worrying about what might be, but will that turn into a whole new thing to worry about ? Feeling stressed, hopeful, hopeless, confused, nervous, sad, optimistic, and pessimistic. Hope that I can sleep tonight :/

The "B" Word

Biopsy. A few months ago, I noticed a small, hard area on the inside of my right breast. Since I was basically seeing my plastic surgeon every few weeks at that time, I just mentioned it to him. He just told me to "keep and eye on it and see if it got any bigger". Um.... my Mom and Grandma had breast cancer, I tested positive for BRCA AND had a mastectomy to reduce my chances...... Kind of freaking out ! I asked the nurse a few weeks later and she told me that it might be scar tissue that formed around where the flaps attach. Ok. That made more sense. I knew that I had an appointment with my breast surgeon soon, so I figured that I would just get her opinion when I saw her. I showed her the spot and she noted the size and shape of it. She told me that it was most likely fat necrosis- fatty tissue that has been bruised, injured, or has died. She also found a smaller spot, just around the bottom curve of the same breast. Just to be sure what we are dealing with, she sent me to have a mammogram or "Tramogram" and an ultrasound. This time, just of the right breast.

I arrived for this mammogram much more relaxed than previous ones because I knew what to expect. I also have kind of overcome my fear of being naked in front of people (kind of). Ok. Not overcome, but I am a bit more comfortable than I ever was before. I have flashed more people in the last 9 months than all of the co-eds in a "Girls Gone Wild" dvd. OK. Maybe not, but you get the idea. It was funny because the tech said that she remembered me from the last time that I was in. I guess that I am unforgettable :) (Either that or the fact that my last name is crazy, so everyone remembers me). Anyway, first the tech did a breast exam, then marked the questionable areas. We went into the screening room and did the usual stretching, pushing and pulling that occurs with a mammogram. She had me wait in the "holding area" while she had a doctor check the screening and make sure that they did not need anything else. I think that I made it through 3 magazines trying to keep busy, wondering what was taking so long and what they found. She returned and told me that the doctor was doing a procedure and it would just be a few more minutes. Phew. Crisis averted. A little bit after that, she came back and we went to have the ultrasound done.

I have had quite a few ultrasounds done in my day, so when that tech also recognized me, I realized that she was the one who had done my daughter's ultrasound 4 years before. That thought kind of relaxed me and I took me back to when we found out that after two boys, we were going to have a little girl. It was such a happy day for me. Of course, I love my boys, but everyone wants a little shopping buddy and someone to buy dresses and dolls for. After a few minutes, the realization of why I was there returned, but being the optimist that I am, I didn't worry too much. This is just a precaution. No big deal. Get this over with and I can enjoy the rest of my day. But it was a big deal.

The tech told me that it would just be about 10 minutes and the radiologist would look at it and she would let me know either way. She said not to be alarmed if she came back in and did the ultrasound herself, just to get a better look. Well, 10 minutes became 20 and 20 became 30. At this point all kinds of thoughts were going through my head. What the heck is taking so long ? Did they find something ? Were they having an oncology doc to look at it ? Then I thought about before. Maybe they are just waiting for the doc to get out of a procedure. Just relax. I said a few prayers and tried to settle myself down. Then they came in.

The radiologist was very nice. She had me lay back down and she tried to take a look at the spots. She went over the first, larger area. I could see on the screen that it was a oval-shaped, empty-looking area. Then she went over the second, smaller spot. It didn't have the same smooth shape and it was not clear. That was when I started to worry.

I sat up and she explained that I had three options.
1. Wait 6 months and have another screening and see if anything had changed. Um. NO.
2. Have a biopsy of the areas in question and know for sure what they were.
3. Have my breast doctor remove the lumps.

I told her that I was not going to wait and that I wanted to do the biopsy, so we know what we are dealing with. She told me that I could schedule it for next week in our local hospital and then left. Then she came back in and told me that I might want to consider having it done at the larger hospital 40 miles away "just in case" they needed to do an MRI or something. Now I am really worried. Did she really think that it was something to be concerned about ? I held it together until I got to the car and then the tears fell.

When I got home, my husband hugged me while I cried and reassured me that everything was going to be ok. I really want to believe this and I do, but then that nasty doubt creeps in and makes me question why I am not more worried. I wasn't worried about being BRCA positive and I was. Maybe I have cancer and I am blowing it off because I think that it is all going to be ok. I know that I just had the surgery 8 months ago, so there wasn't anything there then and my tissue samples were good, so that makes me feel a little better, but this is still hanging over me. Why do these things always happen on a Friday ?

So, next week, I will have a biopsy done and hopefully have some answers.

Post-Op ..... #4

So, I had my abdominal wall repair surgery last Thursday and came home the following day. The pain and uncomfortable feeling was about what I was expecting. It was similar to my C-sections and the TRAM. The part that I wasn't expecting was the drain that was put in my pelvic area. OMG did that hurt ! Getting up out of bed, using the bathroom was so painful. It is still painful today (Tuesday) but not nearly as bad as it was. I stopped taking the meds Sunday morning and the pain has been bearable. If I get up from my chair the wrong way, I still get that sharp pain in my groin area, but it goes away after a few seconds. I go back to see the doctor this Friday, so I am hoping that he will remove it then and I can finally move forward !

As far as the tummy area, it is very tight. It looks the same as before because my doc just opened up the previous scar. I have stitches, which will probably be removed this week. I tried to sneeze yesterday and wow, did that hurt. Laughing is no laughing matter (I know, I know).....

TMI- As with any surgery, having a BM is very difficult after surgery. I was taking stool softeners before I came home and I had a prescription for softeners as well as laxatives. Even with all of these aids, it took several days to produce anything (even gas !). Of course, once something was ready, it hurt terribly, due to the pressure that you are putting on the stomach muscle. Things are still not 100% normal, 4 days later, but as long as there is something coming out, I am not concerned.

"Muscle Weakness"

Well, I just returned from yet another surgery. This time to repair my "muscle weakness". After the last surgery to remove the scar tissue from my lower left abdomen, my muscle didn't bounce back like it should have. So, my intestines were pushing out beyond my waistline (about 4 inches).  We waited a few weeks to be sure that my insides were all healed. Yesterday was the big deal. It is weird to say it, but I was counting down the days. I have had to wear my fat pants because none of my other pants would fit around the bulge.

This surgery was pretty simple, just repairing the muscle and adding more mesh. However, it seemed much more painful last night. The incision wasn't the worst part. The new drain that was placed in my pelvic area is killing me ! It is a really sharp pain when I go to the bathroom or try to get back into bed. It's not quite as bad today, so I am hoping that it will disapate over the next few days.

Until then, I am under strict orders (from my husband) to sit in my recliner and not do anything. I definitely don't want this to happen again !

The Aftermath...... 6 Months Later

So, I have done a lot of explaining what to expect before and just after a TRAM Flap surgery, but I haven't really covered how it feels. I am just over 6 months out from my surgery and all of my other issues aside, I feel great ! I am back to work, pretty much like nothing has happened. I have noticed  little bit that my stomach muscles are not quite what they used to be. For example, if I am going to sit down in a chair, it is more of a drop and less of a graceful motion. :) I am not sure if that is due to the hernia, lack of toning or if that is just how it is going to be. I think that once all of this other business is taken care of and I can exercise a bit, the muscle will (hurt) begin to tighten up and won't be so loosey-goosey. I still have the fluid build up going on, so my tummy is not as flat as I would like it to be. I might go back to the massage after this next surgery and see if that might get things moving. My stomach is still a little numb, mostly around my belly button. My surgeon fixed that area when he removed the scar tissue, so that may be due to the repair more than the TRAM surgery.

As far as my breasts go, they look AWESOME ! I literally have my "20 year-old" boobs back ! I am very pleased with how they look. The scars are fading quickly. I think that after another six months or so, they will be really hard to see. Not like I am going to be showing them off or anything, but they are looking more "normal". They are still a little bit numb in some areas, my right side more than my left. Overall, I am getting the feeling back in them, meaning that if I pinch myself or scratch myself, I feel it, but it is not painful. It is weird because sometimes I will feel an itch and I literally can't scratch it ! I try, but I can't really tell what I am scratching. There is no sensation in my breasts or nipples when they are touched. Not that I expected anything, just confirming that all of the info that you may have read is true.

What I have been through I *hope* is not typical. I think that most people would be feeling pretty close to 100% at this point. I had no issues, I think that I would be there too, just all of these pesky complications keep coming up and setting me back a little bit each time :)

The "Worst Case Scenario" patient

Side Effects:

Swelling...............................Check
Seroma.................................Check
Delayed Wound Healing......Check
Lymphedema........................Check
Scar Tissue...........................Check
Hernia...................................Check

What's left ?

OK, so remember that "bulge" in my abdomen ? I was having some pain and discomfort and the ER doctor said that it was a hernia. Great. My doc ordered a CT Scan and then I saw him the next day. He said "Good news. No fluid collection and it is not a hernia, just weakened muscle". Unfortunately, there is no way to resolve this other than going back in for surgery again. This is a total bummer, but I was expecting it, so no big surprise. I would be sooooooooo happy if this gets resolved and I have no further issues. It would be so nice to get through this and then move on with my life.

I feel like I have been in a holding pattern for the past 6 months. Once I get through one thing, there is always something else to get through, then something else. When I am feeling down about how long this recovery is taking, I just tell myself that it will be so worth it in the long run. My chances are so much better because of this surgery. Yeah, it really sucks right now. All that I want is to feel normal again. No more aches and pains, no more bulges. I'll get there. I'm trying to be patient, but sometimes that is easier said than done.

Big girls don't cry

I am an optimist. Always have been. I try to see the best in every situation. Sometimes, that is easier said than done. Being BRCA + stinks. No one wants this diagnosis, but there is nothing we can do to change it.

Have a mastectomy, that will fix it. But what happens when things don't go exactly as planned ? I have been trying hard through this whole surgery/recovery to take things as they came and not get too upset when things don't go well. Some days are better than others.

These last few weeks have been dotted with good days and bad days. I just want to be normal again. Why is this taking so long ? I look so deformed and feel gross. Why is this happening ? I had such great results a month after the surgery. Will it ever look that good again ?  Nothing in my closet fits.  I feel uncomfortable wearing clothes that fit a few months ago. It's so depressing.

Everyone has so many questions about my recovery and sometimes, it's hard  because I don't know the answers. I know that everyone is just curious and have my best interest at heart, but I don't like all of the attention. What I want more than anything is to feel normal again and instead, I feel like I stick out more than ever before.

I've gone through all emotions in the past few months. Happy, sad, relieved, scared, confused, nervous, tired.... I've cried. A lot. It helps. Talking about it helps too. I am lucky to have good listeners who let me talk through things and validate my feelings. No, this was not what was supposed to happen. Yes, it is ok to be worried. It is also ok to want to look and feel normal. That is not shallow or vain, I went in looking one way and now I look worse. It's ok to want to look normal again. Being BRCA+ sucks.

But...... things will get better. Yep. The optimist is back. :)

What a long, strange trip it's been.....And it's not over yet

Well, it has been about a month since my last post and what a month it has been ! The ultrasound showed that I did have a few pockets of fluid hanging around. I also still had my last drain in from the surgery. My doc decided to remove the drain and I was finally free !!! It only took 4 months, but it felt so great to finally be able to move around without that thing attached. You get so used to having the drain, you don't realize how much you are restricted by it. After that came out, I noticed that my stomach was still not right. I was worried about more fluid collection, so we did another ultrasound and that revealed a decrease in the size of the fluid pockets, so that was a plus.

So, if it wasn't fluid collection, what the heck was wrong ? All along, I had been told that it was fluid. It was cellulitis. It was inflammation. It would get better, just give it some time. But it was not getting better. So I asked my doctor to explain what was going on. He explained that the scar tissue grew between my skin and muscle, it would need some time to grow back together correctly. The scar tissue also pushed everything around, causing the inflammation in my stomach area. We decided to wait a few months, try to let things heal and settle, then we will decide where to go from here. I may try massage therapy and see if that might help the swelling go down. At this point, I will try anything !

This may seem like I am whining, but my clothes still do not fit right. After wearing sweat pants for 4 months, I had to try and find something in my closet to wear to work. I still have a bulged out area where the mass was removed, so I need pants that will allow some space in that area. I also have the swollen area on the right side. So, a lot of the my shirts and blouses don't fit either. My stomach looks like a roller coaster. :( I know that this is temporary, but it is disappointing.

Your Body is A Wonderland......

More like a war zone. Seriously. My stomach looks like a treasure map. Stitches, Doctor's markings, stretch marks, scabs. I'm a hot mess. Ever since New Year's Eve, when I first started to notice the abdominal swelling and the big "bulge" in my lower abdomen, I had been feeling discomfort and pain. I went from having a nice, flat tummy to having a lumpy, bumpy mess of a stomach.

Maybe I had just gained some weight or was retaining water. Everyday, I would ask my husband to compare the lumps to the day before.Was one side larger ? I even took a bunch of pictures to try and see if I could tell the difference. Nothing was happening except that I was feeling more and more upset about how things were turning out. After about a month and a half, we finally decided that we needed to go in and see what was going on. I wasn't really nervous about the surgery, but more nervous that I was just being vain and my "pumpkin" belly was just how it was going to be. The doc was only in for about 30 minutes. He pulled out a grapefruit-sized mass of scar tissue and infected tissue from my lower abdomen. It was like "Bam ! I told you so !" Who is excited that there was a mass removed ? This girl !

So, fast forward a week, and I noticed ANOTHER lump right (I know, right ?!?) under my rib on the same side where the last mass was removed. This one is smaller, feels like a golf ball. I called the office and the nurse told me to come in the next day. My doc wasn't there, so I saw another doc who wasn't sure what it was. He didn't think that it was muscular, but wasn't sure what it was. Seriously ! I thought that doctors knew everything !! I seem to get a lot of "I'm not sure what it is...." or "I don't know why this is happening....". I guess that I should have gone to medical school if you only have to know SOME things..... Ok. back to the topic.... He scheduled an ultrasound for the following week, a day after my next appointment with my regular doc. My doctor wasn't much more help. He wasn't sure either, so we went ahead with the ultrasound.

That was Wednesday and today is Sunday. I haven't heard from the office, but I guess no news is good news, right ? I was assuming that I would get the results at my appointment on Tuesday. So, until then, my golf ball and I will be waiting patiently for a diagnosis.

I was pumped full of alcohol and didn't even catch a buzz

Hello. My name is Kelly and I have a seroma. "Hi Kelly".
I wish that there were a support group  for this darn thing. Some days, it feels like I got into the ring with Rocky and I was Ivan Drago. My stomach area feels so tight and it is a constant ache. Getting up out of the seated position or from laying down is a chore and I end up hunched over until I can eventually straighten myself out. The good news is that it is not permanent and it is really a minor complication.

The explanation that my doctor gave me about my continuous draining was that after the surgery, the cavity where the tissue was removed from did not close up completely on its own. Any gaps allow serum (drainage) that occurs naturally in the body to collect in the empty space. Since there is a mini-vacuum installed there, it sucks all of the liquid out.

Solution: Sclerosing the seroma. My doctor took the drainage tube off of the bulb, then injected it with an alcohol/lidocaine solution, which went directly into the cavity. He then clamped it off and left me. I waited in the examining chair. And waited. And waited. After about 30 minutes, he reconnected the tube to a new bulb and the solution came back out. After dumping it, I was able to go home. What they failed to tell me was that the liquid coming out now was no longer "grapefruit juice" or "lemonade", it was straight up vampire blood. Pretty gross.The drainage amount is down, so yeah me !

The idea behind sclerosing the cavity is to irritate the lining and make it try to heal on its own. This may work the first time, or it make take a few repeat treatments to obtain the desired result. At this point, I am willing to try anything because it doesn't seem to want to close up on its own. The alternative is to go back to the surgery room, open up and clean the area out. The last thing that I want right now is another recovery period. I am finally able to do things that I couldn't do a few weeks ago. I am hoping that it will not come to this. On the positive side, it would give me more time to work on the blog :)
 

Drain, drain, go away.....

Well, I couldn't make it to my next appointment with this seroma. My stomach was so tight and all that I could feel was pressure. My regular doc was not in, but his nurse came in to see me. The "fill-in" doc said that this would resolve itself on it's own if we had left it, but since I was there, we would try and see if we could drain some out. If there was a lot, he would decide what to do.

The first thing that he did was take out the remaining Penrose drain. Then, he inserted a long skinny tube in the area where the drain was. He attached a "turkey baster" syringe to the tube and began draining some of the fluid. (I was happy that he didn't have to use the needle. Not gonna lie....) He withdrew two full syringes (60mL) and decided that there was more in there than he thought. It went across my whole belly area.

Plan B: Insert a new drain. I can't believe that I am going to say this, but I was kind of excited to get a new JP. I know. I am a freak. It is just so much easier to maintain when all of the fluid goes to one place as opposed to catching it in a pad and not knowing how much is actually draining. So, the doc took out the syringe line and put in a shiny new JP drain.

By the time I drove home and emptied the drain, I had already released another 50 mL. So, for the next two weeks, I will be recording drainage again, in my comfy sweats. Someday  I will be drain free, just not today ! <p>

Is that a seroma, or are you just happy to see me ?

Seroma. Ick. It all started a few days after my "conversion". Once the doctor cut the bulb and drain off, there is no longer suction to the tube in draw out the fluids left in the body. Unfortunately, I think that some of those stringy tissue things have blocked up my drain and I went from changing my pad out every few hours to absolutely NOTHING draining. As the days go on, I have developed a bulge from the fluid building up.

At first, I thought maybe I was imagining it and the draining was just done, but even my husband could tell and he does a daily inspection to tell me that it has gotten bigger. I can see the bulge when I look in the mirror. One side of my belly button is flat, while the other is puffed out.

As much as I hate calling the doctor after hours, I put a call in and the on-call doctor told me not to worry. It was not likely to become infected, I just need to come in and then we could decide what to do. Of course, with my luck, this all began on New Year's Eve, so the office is closed New Year's Day and then we got a major snowstorm last night. So, I have an appointment set up for tomorrow to see what we can do. Hopefully they get the roads clear or this thing starts draining !

I am hoping that the build up will create some pressure and push the tissue stuff out of the way. So far, not so good. :(

What IS the point of a belly button anyway ?

My husband asked me this while we were bandaging up my new belly button. I thought about it and there really is no need for a belly button after you are born, is there other than for looks alone.

After surgery, a new belly button is formed by your surgeon. This surgery is called Umbilicoplasty. My husband is grossed out by the belly button because you can see into the hole before it closes up. He said that he can see my insides. Ok. Whatever.

My doctor suggested putting Bacitracin or Triple Antibiotic Ointment just inside the new belly button. Then, cover it with a Band-Aid. Please check with your doctor for specific instructions.

Do not "poke around", as you might cause the belly button to bleed. If you begin to bleed or have puss coming from the belly button, call your doctor immediately.

A drain, a drain...... What's in a drain ?

Ahhhhhh........ The JP Drain. Loved by some, hated by most. These little buggers can make recovery and life in general difficult. Generally, you will have drains placed during surgery. You may be lucky enough to have one or more removed before you leave the hospital. You will most likely leave the hospital with at least one. Here;s a little bit about drains and how to care for them.

The Jackson Pratt Drain (JP Drain) is a common drain that is used for TRAM Flap or other reconstruction procedures. One is pictured below:

The white tube will be inside the body, up to the tapered end, which will be stitched in place during surgery.

Before you head to the hospital, you might want to consider a camisole that has pockets to place drains. These camis are not the most attractive things on earth, but trust me, if you forget to attach the bulb once or twice and feel the pull on your tube, you will be wishing you had one. Here is an example of what they look like. They run about $45-70 each. Your insurance may cover the cost. You also may be able to buy one at a medical supply store.

If you are good with a sewing machine, check out this pattern using a T-shirt. You could probably even make one with an over-sized tank top and some Velcro. The important thing is to make sure that it is easy to open and close from the front. My doctor suggested bringing a few sizes of sports bras to the hospital, but I felt much more comfortable in the cami. Due to the swelling, you may not even want to wear a bra for a few weeks, unless you are leaving the house. I was more comfortable wearing an over-sized shirt or a tank with a built-in bra (Confession- it was a maternity one, so the extra space was nice).

Another option is to wear jackets with pockets inside. Pants can be tricky if you have a drain in the groin area. You should wear pants that are loose enough so that they do not put pressure on the drain. You also need to be able to pin the "grenade" to your pants or tuck it into a pocket. Underwear is the next issue. I solved this problem by taking an old pair of underwear and cutting out a circle large enough that would allow me to move the bulb through the underwear. Just be careful when you remove the underwear. It is easy to forget that the drain is still attached and you may pull on it by accident.

When you are at the hospital, your nurse will care for your drains. She will show you how to strip your drains and measure the fluid. You will want to record these amounts and show them to your doctor when you go for your appointments. The amount that you are draining will help your surgeon to decide when to remove your drains. Usually, they will not remove the drain until you are draining 30mL or less per day.

Here is a video on how to strip drains and measure your drainage. 




The video shows a purple-colored liquid, but obviously, you can expect your fluid to be in the yellow-orange-reddish-pink range. If your drainage is any other color or if you drain blood or puss, call your doctor immediately. If you see any small, stringy "worm-like" tissue particles, don't worry. That is normal.

This is NOT normal:

I woke up one morning and was like "What ?" After a quick call to the doctor's office, I was told to not worry about it, a piece from the connection between the bulb and tube had come out. This piece allows the drainage to come out of the tube, but keeps anything from going back in. At my next visit, the nurse switched out the bulb for a new one and I was good to go. I joked that she gave me a shiny new bulb for Christmas, but she wasn't amused.

When you are ready to have a drain removed, be prepared. It may be a little painful, but it is over quickly. It is over within seconds, but it is a bit uncomfortable. So, hang in there and think about how great it will be once that thing is removed.

Drains are usually removed once the amount that you are draining has decreased to a certain level. As I was told by my nurse, it is not "normal" to be draining a large amount at 4,5,6 weeks after surgery, but some people do. There is no explanation or anything that can be done. However, the JP needs to come out.

This is referred to as "Converting to a Penrose Drain". Basically, the bulb and tube are removed, but the white tube is kept in place. You will continue to drain, but you will be unable to collect the fluid and measure it. It is quite a bit messier than the JP Drain, but it does get rid of the tube, which is a plus. Each week, the doctor will "back out" the drain, meaning, he will remove the stitches and pull on the tube, removing a section. He will then restitch the tube. The area may become a bit irritated. Call the doctor if it is hot, red or if any puss come out. It is important to try and keep the area clean and dry, which can be difficult. It is not ideal to go through this, but it does buy you some time if you are still draining heavily. If the doctor removes the drain too early, the area may close up and the fluid may build up under the skin and cause a seroma.

A Christmas Miracle ! (Almost)

May be TMI- Don't read ahead if you are offended by fluid, maxi-pads and underwear talk. ;)

So, it is Christmas Eve and I have an appointment. Weird, but I was looking forward to this one because I still have my last ab drain in (5 weeks post-op) and I was really hoping that the draining would slow down and I could have it removed. My doc told me the week before that we could probably remove it if the draining slowed down. He also prescribed me an anti-biotic, in case there was an infection that was causing the fluid. Unfortunately, nothing changed during the week.

When I got into the room, I chatted with the nurse and we discussed the drainage. I asked her if it was normal to still be draining so much fluid. She said that it was not "normal", but it did happen to some people. I asked "Why ?" and she really had no explanation. Yeah, me. Once again, I am abnormal. :)

When the doctor came in, he looked over my drainage chart and asked a few questions and told me that we would "back the drain out" weekly. I didn't get it at first, but he numbed the lower area with a series of shots, then he cut the bulb and tube off. All that is left is the plastic tube that has taken residency in my body (Penrose Drain - The long white tube with the holes in it pictured below).

Each week, I will return and the doctor will remove another section of tubing, hopefully buying some time for the fluid to get out. The nurse put a pad on the area to collect the fluid and told me the best way to deal with it is to buy maxi-pads and tape them on or attach them to my underwear. Sounded easy enough.

When I got home, I put a new pad in my underwear and hoped for the best. We were having company over, so I really didn't want to leak everywhere. Thank goodness, I was good for a few hours, then I went to change the pad and it was 100% soaked. Gross.

This drain is continuous. Even when I sit down to go to the bathroom, I have to put gauze or toilet paper near it to catch the flow. The maxi-pad shifts and doesn't always catch the fluid, leading to soggy pants. Sleeping is interesting. I want to lay on my back because I am still having some breast pain, but I am afraid that the pad won't catch everything that comes out at night. I tried to wrap an Ace bandage around myself, to keep it in place, but it is in such an odd spot, it is hard to keep it from moving.

In the big scheme of things, this is no big deal. Things could be much worse. It is just another uncomfortable part of recovery that I get to experience. On the positive side, I can wear pants again and not have to worry about the tube hanging out or getting caught on something.

I am worried about the area getting infected or something getting into the tube and back into my body, but the doc said that there was nothing different that I should do to clean it, so I guess I will just keep a close eye on things and hope for the best !