Tuesday, December 16, 2014

Go Nipples?

It's surgery day, again. Yes, I've decided to get nipples. I'm still not thrilled with the results of the second surgery so I'm hoping this will improve things a bit. I have a very large hematoma on the left side from the second surgery that has gotten smaller but is still very large. Dr. Cober says he will try to remove it during the procedure today.

This surgery will give me nipples. Skin from my tummy will be used to make the nipples. Skin taken from a scar revision on my tummy scar will be used to make the nipples. Crazy, isn't it? At the same time he will take away the "dog ears" on the ends of the tummy scar. He will also do some liposuction to fill in on the left breast which is smaller and not as round as the right one.

So off I go for surgery #3 which I hope is the final reconstruction phase. Wish me luck!

Sunday, August 31, 2014

Post Surgery Post

It's Memorial Day (May 26, 2014). We are planning a trip to my Mom-in-law's house for Cioppino. I thought I'd be able to help with the cooking and do more than just eat. Unfortunately, I'm really not feeling up to it. I'll be there and I'll eat but my left-side midriff is still very very sore.

My surgery on Tuesday (May 20, 2014) went well. The doctor seems pleased with the results. Two drains came out on Thursday and the last two came out on Friday. Most of the breast area is numb. It's a bit sore and bruised but not terribly painful. The one area that is very sore is on the left side where the doctor made stitches inside to create a new breast shelf to make my left side the same height as the right side. My original breasts were uneven by more than an inch. The trouble with the left side is that I still feel the area where the new shelf was made and it's that very tender spot on the midriff just under the breast so it hurts like crazy.

Although I'm pleased by the fact that all the scaring and necrosis is gone on the right side. I'm disappointed by how much he had to reduce my size to make things even and straight. The left side was smaller to begin with and he had to make it even smaller to put in the new shelf. At this point I wish I would have left well enough alone and not gone for the new breast shelf. So far, the result is a very straight unnatural looking line across the bottom of the left breast and the circles where the flap show are smaller but still a lot bigger than I'd hoped and very uneven with each other. The left flap circle is very low on the breast mound. Originally the left side was lower than the right. Now the right side is lower than the left. Arrrggg!!

Fast forward one month . . . I was so unhappy with the results I couldn't bring myself to finish this post. It's now June 26th. I'll give this another shot.

On June 9th I went to see Dr Cober again. There was good news and bad news. I told him how unhappy I was with the left side. He said that he purposely made the left higher than the right side because when it heals it will be lower. That's a relief. At this point I was still an a lot of pain. I'd gone back to work but it was constantly putting ice on my left side to help with the pain and swelling. He also told me that one of the reasons severe pain was a large hematoma in my left breast. He gave me the option of going into surgery again to have it removed or just waiting for my body to absorb it. I took a few days to make up my mind but I decided to just wait it out. So he referred me to physical therapy (PT). So I've gone to PT a couple of times and will start going twice a week on July 7th.

Another fast forward . . . tomorrow is Labor Day (September 1, 2014). So it's been over three months since the surgery. I've been feeling healthy since about the middle of July (3 months after surgery) at that point I was back at the gym and could do pretty much anything without pain. The hematoma is still there. It's not painful anymore but it's very hard. It feels like a large hard disc. It is under my left arm and on the side and bottom of my breast. I believe it has gotten smaller but only slightly. The edges of it used to be smooth and rounded and now it is less rounded.

It bugs me to no end.

I can't bring myself to post a picture. I hope the ultimate outcome will be good enough that I will at least be okay with posting a before and after shot on the private BRAC facebook pages. Right now I'm not able to do it. I'm still glad I had the PBM but wish I would have made different choices regarding my phase 2.

My next step is an appointment with my plastic surgeon in November. It is supposed to be a pre-operation appointment to get nipple reconstruction. Maybe the hematoma will be gone by then. I so hope so.

This has been a long journey . . .

Saturday, May 10, 2014


After my surgery, our first out of town road trip was a visit to see my step-daughters and their families. During the visit a group of women met me in a bedroom so they could see my new boobs which can best be described as "frankenboobs". Our five year old granddaughter, Addy, decided she wanted to see too.

After checking with her Mom to make sure this was okay I flashed my frankenboobs. She was the first to speak and said, "GeeMa, where are your nipples?" I told her the doctors were going to make me some new ones. With that she was out the door and back to playing.

As I gave Addy a goodbye hug that day she whispered in my ear, "GeeMa, I don't like your new boobs with no nipples." That's our Addy. She says exactly what she thinks.

Twice now she has run up to me in a group of people and asked, "GeeMa, do you have your new nipples yet?"

It's a good thing I'm not very shy. She makes me smile every time. I like to tell this story just because it's so cute and so Addy.

Also, the truth is it feeds my determination to see this thing through. When I started this process I didn't even think about the nipples phase of the process. My focus was on the preventive mastectomy, the DIEP flap reconstruction and stopping that BRCA2 mutation. I told myself that at my age the nipples phase wasn't important. Who would see them anyway besides me and my husband.

With the "big surgery" behind me I'm thinking it would be nice to have nipples. Nipples will be the prize at the end of this whole process. The proof that I'm back to normal. Even if only my husband and Addy ever see them.

Five Months In

I survived! I'm glad I did it. No regrets! Even if I had to stop now and not finish the process I'd be glad I did it. It's worth it!

I intended to document a step by step recovery process. Honest, that's what I thought I would do. I could easily have kept a diary of sorts but I didn't. The one thing I did was take pictures of myself about once a week. So what I have is a bunch of pictures and my memory. Just writing what I remember will be terribly dull so I'm glad I didn't document it play by play. This is what I remember.

Overall everything went very well. I went into the hospital early Friday morning (December 13, 2013). I was in surgery for 12 hours which is about average for a double mastectomy and DIEP Flap. I don't remember much about Friday. I think I remember waking up and Denny and Wanda were there. I was in the critical care unit until late on Saturday night, I think. Saturday is pretty fuzzy too. I remember that Cindy and Denny were there with me until I was moved to a regular room. I remember I was catheterized (not comfortable) and that I was checked about every 30 minutes to be sure the blood flow to the flaps was good. 

I came home on Tuesday. That's when I remember the pain starting. The ride was uncomfortable. Every bump hurt. Thanks to all my BRAC sisters we did a pretty good job of preparing for me to come home. I had most of what I needed waiting for me. We had borrowed an electric lounge chair the kind that helps you up to a standing position. I slept in that chair for about 5 weeks. It was a life saver. I was so fortunate to have two people taking care of me for the first week. Dennis and Lisa treated me like a queen. They helped me up and down the stairs, helped me shower and dress, changed my bandages, emptied my drains, feed me, tucked me into my chair and covered me up dozens of times every day. Managed my medication and waited on me hand and foot. They were wonderful.

By the second week at home I was feeling a bit stronger and was able to do a few things like walk up the stairs unsupervised and shower on my own. I don't remember exactly when I got the last drain out but I think it was about 2 weeks out. I went back to work at about 5 weeks. I work a desk job and only worked about 3 - 4 hours for the first two weeks. My husband drove me back and forth.

Overall I recovered well but I had a lot of difficulty healing and it took what seemed like forever. My abdominal incision didn't completely heal until nearly 4 months. My breast incisions didn't heal quickly either. The left side was healed by about 2 and a half months. The right side didn't heal for much longer and I had to pack it until just a few weeks ago (about 4 and a half months). Also during February the right side got infected so I was on antibiotics for awhile. I'm so happy that it is finally healed! This wasn't painful just incredibly frustrating and annoying.  

While I was in the hospital Dr Cober warned me that I would have healing issues. The trouble was caused by the fact the spared skin on my breasts didn't have good blood flow. So a lot of tissue died and I had to heal from the inside out. This also happened in the center of my abdominal incision. Which was probably caused by a lack of blood flow from a previous surgery.

Dr Cober says he can fix the spots that didn't heal quickly and straighten things out. The right side is bigger and higher. So here I go again. That surgery will be on May 20th. And before too long there will be another surgery to fix my abdominal scar and give me some new nipples. I'm so ready to get this done. I think I've done the hard part and I'm on the home stretch.

Thursday, December 12, 2013

Go . . .

It's 10:45 pm. I need to get up at 3:15 in order to make it to the hospital by 5:30 am. Everything is a go. I'm feeling prepared and not as nervous as at times earlier this week. I'm looking forward to having this behind me. When I post next time this will all be history. Off I go.

Wednesday, December 11, 2013

Set . . .

Nearly everything is set to go. Today is my last full day at work. Tonight I'll make one last trip to the store and do some last minute cleaning. Tomorrow I work only in the morning and then head out to Hillsboro for a pre-op appointment with Dr Cober. Then its pack my bag for the hospital and focus on all the pre-op instructions like nothing to eat or drink after midnight, bathing with special soap and insuring I'm using all freshly laundered, clothes, towels, and sheets. At this point I just want to have the surgery behind me. My anxiety level is building but it sure helps to stay busy and I have plenty to do before surgery.

Ready . . . set . . .

Tuesday, December 10, 2013

Ready . . .

It's Tuesday. Friday is surgery day. So far I'm not as anxious as I thought I would be. I've been keeping very busy. My Christmas shopping is done which is a lifetime record I'm sure. I'm as ready for Christmas as I'm going to get. I have loads of things to do at work, housekeeping tasks, office party, packing and a doctor appointment to keep me busy until I jump into bed on Thursday night.

My surgery is the first one on the schedule on Friday morning. We are supposed to arrive at Saint Vincent Hospital at 5:30. I think I'm READY.