Saturday, November 26, 2011

Week 3 & another surgery

I started this week with another early-morning surgery. Monday, I needed to be at the same-day surgery place by 6am, which meant leaving the house after 5am. I am SO NOT a morning person! I'm grateful that my dad is down helping.

The purpose of this surgery is to remove an area of skin necrosis on my right side and to "clean" the scabbing on the left side. Out-patient, no general anesthesia, just local.

We get to Charlotte, I complete the paperwork, and I head back to get ready. This place is different because they wouldn't let my husband come back with me. He is the only person who helps me dress, so I was a bit nervous about that. The nurses did a good job, though. I didn't even have to have an IV! After they got me ready, they brought Ward back, and we waited.

At 7:30am, my plastic surgeon came in and drew around the massive scab that had formed since he did the whole scraping thing on my right side. Then, he drew around the left....it was more like a line since he was just doing minimal cleaning on that side.

Finally, at 8am, I went to the OR. This was different than ANYTHING I have ever experienced before. I was awake when I got on the table, when the surgical techs tied my arms down. I was awake when they raised the table and rotated it on its side. I was awake when they draped me and doused me with Betadine from my chin to my hips. It was FREEZING! I was awake when they made the little drape thing, like in C-sections, so I couldn't see what was happening.

I never felt pain, but boy did I ever feel intense pulling, tugging, and pressure. I could literally feel the tension in the stitches as he pulled them through and I will never forget the sound that it made. Dr. Appel put extra stitches in my right side for extra support. In fact, there's 3 different kinds of stitches on that side, 2 kinds on the left- I learned some things in the OR that morning. He decided to take my left drain out, which was more nerve-wracking in thought than it was in reality. It didn't hurt but too bad. I never had local anesthesia for any of it.

Yep. I went through surgery with nothing. Nada. Zip.ZERO drugs. The surgical techs were awesome. We picked on my surgeon and it was funny. I threatened to wax his chest hair if he hurt me! (I love that I can pick on him) The techs really tried to take my mind off of what was happening and they were awesome. Maybe because I'm a mom, I can multi-task very well. Even though they kept me in conversation, I knew all too well what was happening on the other side of that sheet.

The surgery itself took about an hour, although it felt like three. After all was done, I went to recovery. I couldn't believe how shaky I was right after the procedure. I was in recovery about 30 minutes and I walked myself out.

Dr. Appel had put plenty of steri-strips, gauze, and clear tape over each wound and the bandages would stay on for 3 days. So that meant no shower or unveiling until Thanksgiving Day. Ward got a little vacation from changing dressings and tending to drains around the clock.

Thanksgiving Evening, while everyone was preparing for Black Friday, I took a shower and Ward removed my dressings. I was so scared for them to come off. I was scared of what I would see. I knew that if necrosis was a big problem, I risked losing the expander on the right side. I was so scared that I would have one expander on one side and nothing on the other for 3 or 4 months.

When Ward told me to look down, the tears came. They came hard. I think I scared him because I started crying so hard in the shower. I finally told him why- that I was relieved the incisions looked so good, that I was so scared of the expander failing. I had something new to be thankful for.

So we're taking care of them with dressings & bacitracin again. My left side is still sore where the drain was, and although it wasn't really draining a lot when Dr. A took it out, my side is swollen from extra fluid.

I go back to see him on Monday to remove the stitches in my right side, as well as the drain. YAY! I can't wait to be drain-free. I'm hoping this is what was needed to get over this hurdle. Maybe in a couple weeks I can get a fill in the expanders. I'm not going to rush it-slow and steady for this race.

The picture below was taken after my shower on Thanksgiving. I think it looks great and I hope Dr. A does, too.

Week 2 & Necrosis

This week, I'm awake a lot more. I'm very stiff when getting up or sitting down. My range of motion on the left side is finally improving-I can almost lift my arm horizontally to my shoulder, but it is SO tight and painful. My right side continues to improve.

I see the plastic surgeon again twice. The first visit, he is growing more concerned about my right side healing. There is an area, about the size of a nickel, that just isn't healing well. It's discolored and almost has a scab. He seems to be OK with the left side. I can tell that he is very concerned because of the amount of time he is spending just looking. No words, nothing. Just looking. I'm getting a sinking feeling.

He tells me & Ward that he's going to leave the drains for now (Dang it!) and that we need to put a new antiseptic cream on the incisions. He hands us a tube of something and schedules me to see him late that week.

We put this new gel on like clockwork. It's making the bandages stick, so Ward had to get a different kind of gauze to put on. It's not getting any better.

I'm decked out in some jeans, make-up, & jewelry when I go back to see Dr. Appel. I felt really good that day, but I was scared at what he would say. I get in there and he starts looking again. This time, he tells me that he believes that it's just not going to heal like this. He says that he is going to try some debridement on the area. He leaves to get a pic, scalpel, and other tools. He comes back and starts digging at my right side. I can't feel a thing-I'm still numb from surgery. But I can hear it. UGH. He scrapes away all the dead stuff, trying to reveal viable, healing skin.

He does this a little bit to the left side to "clean it up" a bit. After he is finished, he tells me that my right side isn't healing deep down in the tissue. He is going to have to remove it. He doesn't want to have me put under general anesthesia again nor make a huge "surgical" ordeal out of this. We all talk about it and decide that it would be best to do an official, surgical debridement in an outpatient, surgical setting at the same-day surgery place in his building. Although he felt like he could do this in his office, he would feel better (and so would I) if he performed this in a sterile setting. We set it for Monday, Nov 21. It would be done under local anesthesia, and by the way, it would probably be safe to leave the drains in. (AHHHH!)

In the meantime, I was able to visit my office after this appointment and my middle daughter's school. They all looked shocked to see me. It was wonderful to get out and see people! I felt good getting outside, but it wore me out. I still have trouble realizing that I had major surgery just a couple of weeks ago.

The picture (of my right side) below was taken after he scraped (debridement). It's not a pretty picture, but necrosis isn't a pretty thing. Oy vey. I'm so thankful I have no feeling there.


Week 1 & the Unveiling

My loss of memory carried over into my first week home. I stayed in my recliner a lot. Ward took awesome care of me that week, along with the kids. We were blessed to have friends, and even strangers, deliver meals each night so Ward wouldn't have to cook. My dad had stayed for a few days and my mother-in-law came to help us the first weekend home. It was nice to have them there.

On my third day home, it was time to remove the bandages from the hospital and begin applying Bacitracin and dressings 3 to 4 times a day. The first day we did this, I never looked down. Ward told me how great I looked, but I couldn't bring myself to see.

The second day, I looked. What I saw literally took my breath away. It wasn't a bad reaction, but I was unprepared. Since I had a skin-sparing mastectomy, I was unprepared for the folds of skin near my armpits that created nooks, crannies, and caves on my sides. No one ever told me about that. I've since learned that once the expanders start getting filled, they will fill-out into this extra skin that my plastic surgeon saved. My nipples were gone, and I was left with horizontal scars on my chest. I was also pleasantly surprised to see that I wasn't totally flat- my surgeon had put about 250cc of saline in each expander during surgery. I think I'm probably a very small A.

I finally cried a little on the third day. After a dressings change, for some reason, I realized that I was going to miss adjusting my breast in a bra. I had a deep sense of sadness come over me and I grieved the loss of my breasts. Ward just let me cry and it didn't last too long.

I had both post-op visits this week. My breast surgeon was first, and he seemed thrilled with the results. He told us the best news we could have ever received-my pathology reports found no cancer. He told me that he would still perform my breast exams, but my heavy testing schedule was officially over. WOO HOO!
Being BRCA1 positive, my risk of breast cancer dropped from over 80% to less than 5% since I elected to do a double mastectomy.

I saw my plastic surgeon this week. He wasn't able to remove my drains yet because they were still draining a lot of fluid from my chest. He looked at both sides, and although the breast surgeon was pleased with the healing, my plastic surgeon wasn't. He was concerned with my right side, which had a lot of bruising and purple areas. It was at that visit I learned of my chance of necrosis, or the skin dying. My PS said that he wanted to keep on track with what we had been doing and we would keep an eye on that right side.

My range of motion on my right side is better, I can lift my arm almost in-line with my shoulder. My left side isn't any better and I'm really not trying to move it a lot. My pain has been manageable with Dilaudid and muscle relaxers.

The picture below is probably around a week post-op. Many women have told me that once they have had a mastectomy, they become desensitized concerning their breasts. This is true for me. I haven't placed any pictures of my real breasts on my blogs-I could never do that. I am, however, posting pictures each week post-surgery because I simply don't view my chest as "breasts" anymore.

A Date with Double Mastectomy

November 1 is a huge blur. In fact, that whole week was a big blur! I was hoping to rememeber everything that happened, but thankfully, the Dilaudid I was on had other plans.

We had to be at the hospital at 6am, which meant that we needed to leave the house around 5:15am. I had celebrated Halloween with the kids the night before and my father came to help with the kids.

We arrived at the hospital and things moved pretty quickly. My husband & oldest daughter, Paige, were with me. My brother and his girlfriend also came early that morning.

I was sent to a little room to get ready. I changed into the lovely gown and before I knew it, my IV was hooked up to the PICC line and they must have already given me something because things become very fuzzy. I asked my husband to take pictures of my breasts. I've heard many women say that during the process, they would forget what thier real breasts used to look like. I wanted documentation!

No sooner had Ward taken the pictures and I slipped my gown back on, my breast surgeon came in. He took his surgery marker and drew lines on my breast. He started near my sternum and went perpendicular to my nipple. He traced the marker over the top of my nipple and extented the line toward my armit. He switched sides and drew the other breast. He told me it wouldn't be a long wait and he didn't lie.

I don't remember my plastic surgeon, but I'm sure he came in there. I learned from my husband that my brother had arrived, so I asked to see him and my daughter before they took me back. I think I was able to visit with them all of 5 minutes before someone came into the room and announced that it was time to go to the pre-surgical room.

As they were wheeling me out, I remember one of my family members ask if they could wait with me and the staff person told everyone that they would have to wait in the waiting room because they were taking me back. It was time.

I almost panicked as I said my good-bye's. I say almost because someone gave me some good drugs. I barely remember going through the double-doors that I saw while I was saying good-bye to my husband.

I know that my surgery lasted about 7 hours. My breast surgeon performed my lymph node dissecion on my left side as they got started, and preliminary pathology came back clean. The plastic surgeon was able to place both expanders in my chest using my chest muscles. The Alloderm (cadaver tissue) was not necessary for me, thank goodness. (I was worried about that because the use of Alloderm automatically meant 4 drains instead of two and an increased risk of infection) I came out of surgery with no breasts, two expanders, two JP drains, lots of stiches, and a catheter.

I remember none of it. I don't remember recovery at all. I don't remember going to the room. I don't remember seeing my husband or visiting with my daugher & brother afterwards. The first memory I have was sometime very early the next morning. I was on Morphine and having bad reactions with it.

Evidentally, Morhine makes me evil according to my husband. I don't remember, and he won't tell me, what I said while under the influence. It must have been really ugly. I'm embarrassed, even today, that I was a mean person after surgery, even though I don't remember. Not only was I mean, but I was very, very itchy. Like unbearable itchy. I remember scratching myself, HARD, everywhere I could reach, which wasn't very far.

At some point that morning, the staff realized that I was having reactions to Morphine and thank goodness, my surgeon switched me to Dilaudid. Much better. I slept.

The second night, I vaugely remember a slew of visitors. Three co-workers, including my boss (I made him feel my expander! OMG!), more friends and family. Ward even brought the kids, which I don't remember. I never ate while I was there.

The day I was discharged, I remember a little. I know I was able to pee on my own. I had a breast nurse navigator come and give me some mastectomy prizes. I got lots of reading material, a little pillow for my seat belt made by a Girl Scout, fake "pillow" boobs to pad a shirt with, and a weird tank-top that had pockets to hold my drains. Somehow, she helped me change.

It was at that moment that I clearly remember having a very hard time moving my left arm. I realized the impact of the lymph node dissection and it was unreal. Both arms had limited movement and I was sore. I never looked down either.

I was discharged on November 3. Ward carefully drove me home and put me in the recliner, my new best friend.

Maybe it was a blessing I can't recall the events of my date with a double mastectomy.

(lymph node dissection location, left side)

Pre-Op #3 and a surprise

November 1, 2011 came really fast. We returned from our fantastic honeymoon in Savannah, Georgia on October 28th, so I had a mere 3 days to prepare. I was so busy unpacking, packing for the hospital, seeing family & friends, tying up loose ends at work, and doing Halloween that surgery was here before I knew it.

I had a surprise at my final pre-op that was on Monday, October 31. Anesthesia decided that since my veins were crap from my previous chemotherapy treatments, it would be safer for me if they installed a PICC line. I was familiar with this, as Ward had one during his battle with Crohn's, but I'd never had one. Being the big baby that I am, I was scared to death. I knew what the Anesthesiologist was silently saying. Although pain management was a huge factor in the placement of the PICC line, it wasn't the only reason. Should my lymph node dissection come back positive, I would be ready.

The actual placement of the PICC line wasn't too bad. It was done by the Radiology department and they were super fast! They geared up with gowns, masks and gloves while I lay on a table, draped with warm blankets. They tied my arm down and used an ultrasound to find the lucky vein. The worse part of the whole thing was when they injected Lidocane in my arm to numb it for the placement of the PICC line. Talk about BURN! It felt like my arm was on fire, but it only lasted a few seconds. I couldn't feel a thing after that.

I was watching the screen above my head. It was a "live" X-Ray of my chest. I watched this guy insert the PICC line tracer in my chest. He took a couple of still-shot images and then it was over.

I never felt any pain after the initial burn of the Lidocane, and I was able to do Halloween with the kids with minimal discomfort. It was, however, a physical reminder of what was to come the following day.

Dream Wedding- October 22, 2011

Ward and I have been together for 4.5 years and together, we have 5 amazing children. We've been planning our wedding for a long time. In January 2011, we set the date and reserved all the big wedding things. The venue, the food, the music.....you name it. In June, I was diagnosed with early stage breast cancer and together, Ward & decided that a double mastectomy would be the right course of action.

We debated on what, and if, the plans we had set for the wedding should change. We both new that come November 1, I would have major surgery and would be out of work for a while. After minimal discussion, we knew we weren't changing anything about this wedding.

Our family had been through so much those 4+ years. We wanted to include our children in the ceremony. After all, this wasn't just about us. People ask all the time how all of our children get along. The answer is that they get along great with the occasional sibling squabble. The kids have been right there with us through the bladder cancer, the crohn's disease, and everything else in between. We leaned on God and each other for support. The ending result was a wonderful family dynamic. We were closely bonded.

Ward & I thought it would be awesome if we each presented the other's children with a meaningful gift. Our pastor helped us right "vows". I would say them to Ward's girls and present a gift, Ward would do the same for my three. We told no one about our plans. We presented our four daughters with beautiful necklaces that had a heart engraved with each of their initials. Ward presented little Allen with a cool pocket watch. It was a very moving moment in the ceremony and more happy tears flowed then than at any other time.

Ward & I also had another surprise for our beloved family & friends. Unbeknown to anyone, we had secretly taken dance lessons. Everyone knew that we had NO clue how to dance and we played that fact up during the weeks that led up to the wedding. We had a blast surprising our guests with a romantic waltz that split into a fun, peppy swing dance. You can see our practice, sans swing, the day before here: Practice Wedding Dance

The weather was perfect, the girls were breathtakingly gorgeous, my little man was so very handsome, and Ward & I were pretty snazzy ourselves.

 It was a perfect, wonderful day that I will remember forever.


Amy & Ward, first dance



Amy with daughter, Larissa & son, Allen

Amy & daughter, Paige

Our girls Mackenzie, Jessica, and Larissa

Amy & Ward, first dance

Too cute for words!

Missing In Action!

It has been SO long since I updated my blog! My intention, at the beginning of this journey, was to blog about what was happening to me as often as possible. It wasn't my intention to have a month-long gap, but things happen I guess. My things happen to include a fabulous wedding & honeymoon, a double mastectomy with temporary expander placement, and another correction surgery in the span of 30 days. Needless to say, it's been a busy month!

I plan on blogging about my journey thus far, from the wedding to my recovery to date, with different "chapters".

I've missed this and I'm happy to be back!