Week 5 & AMAZING Physical Therapy

This has truly been my best week by far!

Monday, I started physical therapy and I couldn't wait to get there. My great friend, Laura (who happens to share my Plastic Surgeon and is getting her implant exchange next week!), told me all about her experience with PT and the "new" technique that is used for mastectomy patients.

I made an appointment with my therapist, Peggy, for 10:15am. I got there at 10 so I would have plenty of time to fill out more paperwork. She took me back and we had a quick intro, medical history, and how the mastectomy has affected me. She measured how many degrees I could lift my arms from a sitting position and then a laying position. Full range is 180 degrees. (Remember your protractor?)

My measurements were:
Sitting-right arm: 161 degrees
Lying down-right arm: 168 degrees

Sitting-left arm: 142 degrees
Lying down-left arm: 146 degrees

Obviously, I have some work to do. After measuring, Peggy explained that she would use a technique called "Myofascial Release" before we started any exercises. I never heard of that before, it sounds kind of fancy, so I was curious to what this entailed.

Before I explain this technique, let me update you real quick on how I feel. The lymph node dissection that they performed in my left arm pit has affected my left arm's range of motion more than I ever thought it would. It has been a struggle since surgery to even wrangle a cami over my shoulders because I couldn't lift my arm very far at all. In general, I felt tight. It's so hard to describe but the best I can compare it to is that it feels like I have a sports bra on, that's at least 2 sizes too small, ALL the time. It is uncomfortable, not necessarily painful. This extreme tightness encompasses my entire torso, my underarms, sides, and the upper half of my left arm. When I have a muscle spasm, it's even worse. I sleep in the recliner still, and I only recently (over the weekend) took a shower or dressed by myself. I was able to start driving over the weekend, but it is difficult for me to turn & look behind me, to turn the wheel with my left arm, and I learned that my seat belt really hurts my left side. Thank goodness for little pillows!

Alright, so back to PT. From Peggy's trainer's myofascial release website, it says that "Myofascial Release is a safe and very effective hands-on technique that involves applying gentle sustained pressure into the Myofascial connective tissue restrictions to eliminate pain and restore motion".

So what is myofascial tissue you ask?

Myofascial tissue is "Fascia is a specialized system of the body that has an appearance similar to a spider's web or a sweater. Fascia is very densely woven, covering and interpenetrating every muscle, bone, nerve, artery and vein, as well as, all of our internal organs including the heart, lungs, brain and spinal cord. The most interesting aspect of the fascial system is that it is not just a system of separate coverings. It is actually one continuous structure that exists from head to toe without interruption."

The way that the physical therapist explained it to me was that fascia was very similar to the "thin film covering" that we often remove off of a chicken breast before we prepare it. That "film" is one continuous structure in our body. When we have trauma to our body, such as mastectomy surgery, that myofascial tissue locks down and tightens as a defense.

Here's the scientific explanation of that: "Trauma, inflammatory responses, and/or surgical procedures create Myofascial restrictions that can produce tensile pressures of approximately 2,000 pounds per square inch...".

As Peggy explained all this, I really got excited because it made PERFECT sense. She told me that it was like a massage when she started, and it felt like one. She started in the center of my chest, with gentle pressure. At first, it felt like she was just pushing her hand down on my sore sternum, but after a little bit, her hand started to slide down. I could feel the tension releasing! She moved to my left side, which scared me.

It scared me because I am so sore & tight. I've never been scared to move or have someone touch my body before, and it's not a great feeling.

As she worked on my left breast, side, underarm, and arm, I could feel things start to loosen up and it felt wonderful! After the "massage", we moved to the equipment room and she showed me some simple stretches for me to do at home. I felt wonderful!

After that, she took measurements again. The progress I had in just one session is nothing less than AMAZING!

Sitting-right arm: 172 degrees
Lying down-right arm: 175 degrees

Sitting-left arm: 160 degrees
Lying down-left arm: 165 degrees

I will go to PT twice a week. Since she was booked for the rest of this week, I was able to slide into a lunch-time slot yesterday. I made even more progress with my range of motion. Lying down, I was able to extend my right arm a full 180 degrees.

I was SO excited to show Ward what I can do! Peggy told me that she would have me comfortable enough to finally sleep in the bed again! I still have some work to do and strength to gain, but I am so grateful that this opportunity was available to me! My first fill is Friday, so naturally, I'm nervous. BUT....I feel like I have an advantage with PT. She has relieved so much pressure and tightness in my chest that I feel like I have room for the expansion.

I am so impressed with the myofascial release! I think it could help so many problems that we have with our bodies sometimes. I became a believer on Monday morning because I could literally feel my body "let go" of that tension. It was truly incredible.

I'm ready for some cleavage! :0)

Week 4 & the little things

Week 4 has been both an uneventful and an eventful week, all rolled in one. Uneventful in the regard of no setbacks!  It's been eventful because there has been a lot of mini-milestones for me. All these little accomplishments have been very encouraging and I feel excited about it.

I saw my favorite plastic surgeon twice this week. On Monday, he was able to see the results of his debridement procedure and I never thought I would be so excited to show my doctor my boobs! I swear, I couldn't get those dressings off fast enough. I was so relived that Dr. Appel was just as happy about the healing progress as I was. My left side looks absolutely amazing- the incision has healed into a perfectly smooth scar. My right side is quickly catching up. He took a few minutes to inspect the wound underneath the stitches and decided that I would return in a few days to take the stitches out. He does "play it safe" when it comes to healing and I am so very grateful for that.

He asked Ward about my drain output, which has been barely anything, so he asks if I'm ready to get this last literal pain in my side removed. Um....YES I AM! I have to be brutally honest here- I am a huge baby when it comes to pain. I'm a whiner! I think it's truly the anticipation of the unknown that allows my inner-baby to come out. As happy as I am knowing that the last drain is going to be gone, I am petrified that it is going to be very painful.

I do have some validation for this fear because this has been the drain that has bothered me the most. I don't know why, but it has been very tender and has given me shooting, searing pains randomly through my recovery. As I lay on that table reflecting all this, Dr. A asks me if I'm ready and I can barely grab Ward's hand in time before he starts clipping the stitches. Before I knew it, he yanked it out. IT HURT. The left one didn't hurt like that, but of course, it was removed during last week's surgery and I was a bit distracted. Although there was a lot of pain, the relief of it being gone overcame any discomfort I had.

On Friday, we came back to see Dr. A. It was a quick visit and it took him no time at all to take the stitches out on my right side. I didn't feel it at all because I'm still completely numb. He decided to put a steri-strip over the incision for a little extra support. I just leave it on until it comes off or until I see him again next Friday.

I've officially gotten over this healing hurdle and next week, I will begin my reconstruction. I get my first fill next Friday! These temporary expanders that have been placed under my chest muscles will begin to do their job. He will insert a needle in a port that is located in the expander and begin filling it with saline. As the expander fills, my chest muscles and skin will expand and stretch. No more underarm caves! YAY! The great part about this type of reconstruction is that I can choose the size of my breasts. How cool is that?!?!! It will create a good support pocket for a silicone implant that I'll get sometime next year in an out-patient procedure.

I'm really excited (and anxious) about this. As of now, I have about 250cc's of fluid each expander. Dr. Appel told me Friday that I am a large "A" cup. Since I want to be close to where I was before, at least a large "C" cup, my expansion goal is to have between 550cc's - 600cc's of fluid in each expander. As I've researched this type of reconstruction, I learned that most patients usually have between 50cc's - 60'ccs injected during each "fill". Sometimes it takes months for some women to expand to the size they want.

Dr. Appel doesn't take the "slow & easy" approach with expansion as long as his patient can tolerate it. Our goal is to have 100cc's of fluid placed into my expanders at each session. If I can stand it, the amount of time that it will take to reach my desired size will be so much shorter. That would mean that I could possibly be finished filling in January and could have my exchange surgery as early as late February or early March.

The catch to all this growing?? Pain, tightness, and discomfort. The goal is to stretch out muscle and skin, so it has to hurt. I have friends that have done this and I've heard about their experiences. Although they all handle pain differently and have different experiences during the filling process, I am hoping and praying that I can be tough through this, not acknowledge that inner-baby, and get it done. I agree with Dr. A's game plan. I would rather do big fills now and deal with a few days of big discomfort rather than dragging this process out for months.

I think I will be able to be successful at these big fills because I get to begin physical therapy on Monday. I am SO excited about this!! The PT that I will be doing is specialized just for mastectomy patients. It is a combination of deep tissue massage, stretching, and exercises. Not only will this therapy help with the discomfort of the expander process, it will also help me regain my range of motion. Dr. A has warned me that although I will get close, I probably won't regain all of the range of motion I had in my left side due to the lymph node dissection. We'll see about that!

I do, however, have to admit that the impact of the lymph node dissection really affected me more that I thought it would. My pain is very tolerable right now and I am taking minimal pain medicine. I do take muscle relaxers regularly to help with the muscle spasms that I have. My range of motion of my right side is way better than it is on the left. I really can't lift my left arm past my shoulders and I have numbness, tingles, tightness, & discomfort from my elbow to my underarm and side. It's such a weird sensation, but I can move both arms enough to take a shower by myself. That was a big accomplishment this weekend!

I had received the OK to drive last week, but didn't really want to at that time. Friday afternoon, I drove a short distance with Ward and became frustrated almost immediately because I didn't think about a seat belt strapped across my left side. It just plain hurt to have the shoulder strap go across that area. I could turn the steering wheel pretty easily, so I did well. I did have problems turning to look when I was backing out of our driving the way I always do, so I will have to be extra careful when doing that.

I drove more on Saturday and will tomorrow, too. When I was discharged from the hospital after the mastectomy, I received a little pillow to place under my seat belt. It helped a lot when I remembered that I had it for yesterday's drive. It really made a huge difference in the seat belt pain I had on Friday! Who knew?! ( Ha ha!) I will be taking the kids to school this week and driving myself to my PT appointment tomorrow.

One of the biggest & best milestones happened last night. Ward & I went to a Christmas party. It was such a HUGE boost for me to get out of this house (and not at a doctor's office) and see my friends! I had an absolute blast! There was food & fellowship everywhere. Some people knew that we were coming, but there were quite a few people who were floored to see me out. I haven't seen our friends, outside of the some visits at the hospital & home, since the wedding. There were even more people I hadn't seen since early October.

I took a while to get ready last night-shower, hair, make-up. I sported jewelry & perfume. I felt really good about myself last night. All this time before the surgery, I obsessed about how the hell I could ever handle being in public during the reconstruction process with no breasts. I just couldn't imagine being out of the house flat-chested since I have always been rather busty. I was so scared that my self-esteem would tank. Now that I am on the other side of the mastectomy surgery and all that's happened since, it doesn't bother me. Not at all, not one little bit.  I'm so surprised, relieved, and excited that those pre-surgery fears were just that.....fear.

I was just so happy to be at the party and see my friends. They were happy to see me. Some are following my Face Book posts, some are following my blog. Some friends have asked questions. They all know what's happened. I don't feel less-than nor do I feel embarrassment like I was fearful I would. I am so grateful that my God answered those prayers that I said during the time I spent dwelling on the procedure. He really did give me the strength I asked for and probably a few little bonus gift, too. Not only am I excited about the new fake boobs that I'll have (which by the way- I'm super excited about the fact that I will NEVER have to wear a bra again & the new girls will always be perky! Hello tank tops & sundresses this summer!), but I also feel relieved going forward now because I don't have to always worry about lumps, extensive monitoring & testing, and breast cancer for the rest of my life.

Kinda makes a girl feel good! :)


The picture below was taken at the end of week 4. As the expansion process progresses, the expanders will fill and stretch my muscles & skin. This is the phase where my chest will be lumpy, bumpy, and uneven as we reconstruct.

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!

The power of the number "10"

My countdowns are well under way. I'm officially 5 days away from our wedding, a day that Ward & I have both waited on for years. We've been together for over 4 years and planning our wedding for almost 3. Little things like Cancer and Cohn’s disease kept getting in our way. Needless to say, it's finally happening! I am so excited! I know the wedding will be beautiful and a happy day for our family.

Last week, we realized we were a mere 10 days away from the wedding while we were making all of our last-minute to-do lists. For some reason, I realized that my surgery would be a mere 10 days after our beautiful wedding.

The power of the number "10" resulted in a minor breakdown for me. The guilt I feel for having such a major surgery right after our honeymoon and losing work right before the holidays weighs on me. The fear I have, well, it's understandable, but at times it can take my breath away. The anxiety about losing my boobs. All that-it's overwhelming.

I hate that surgery is so close to the wedding even though I know there was no other time to do it. But then, when is the right time for any surgery? I really hope that I don't forever associate our wedding day with mastectomy. I pray that in the end, I will look back at this pivotal point in my life and think to myself...."I started a new life with my husband, our children, and had surgery to ensure that life together".

I can't focus on that now, though. There's too much to do! This week will be crazy for sure-wrapping up wedding plans, wrapping up things at work since I officially begin my leave next week, getting things prepared for my dad who will stay with the kids while we're gone on our honeymoon, and sooooo much more.

Today, I'm well past the number "10" and hope to keep this momentum going! :)

Story time?

Ward says that I have been presented an opportunity to impact many women who will face this decision.

What the heck is he talking about? Well, he’s talking about an email I received this morning from one of the gals that are coordinating the American Cancer Society’s “Making Strides Against Breast Cancer” walk that is taking place the Saturday before my surgery.

Just to catch anybody up on our schedule the next few weeks…..Ward & I are finally getting married in 9 days (YAY!), on October 22. We’re saying goodbye to the kids and work for a week so we can have some much needed R&R and we’ll return on Friday, October 28^th. We were originally going to come back on Saturday, but a good friend had sent me info about this walk. Ward & I decided that it was an opportunity that we couldn’t miss. An empowering walk with sister fighters & survivors, a mere three days before my own double mastectomy, reconstruction, and sentinel node biopsy. It can’t be a simple coincidence...we are there!

Anyhoo…I’ve been chatting with this lovely lady for over a month now. She’s helped me create my own team to walk with me and to help raise money. She is coordinating our T-shirts and takes the time to answer all my questions, so we’ve spent some time communicating. However, I was really surprised to receive this email from her this morning:

“Mrs. Jones* will be filming a short video the morning of our walk. She was wondering if you would be interested in being filmed for the video. It's just to learn more about your story and why you are participating in the walk. I think you are perfect for this short film! If you are interested, what time would you be arriving at the walk? She can meet you and film before it begins. It won't take a lot of your time. Just let me know, thanks!” (* name has been changed)

A video interview sounds harmless, right? Why am I hesitant?

It’s because I don’t feel like my story needs to be in the video. Over the last few months, I have met some tough cookies. Women who were diagnosed with Stage 3, Stage 2, even Stage 4. These women’s stories need to be told. The story of a lady who was healthy when she accidentally discovered a lump in the shower and how that lump was Stage 3 breast cancer with positive lymph nodes. The stories of the women who didn’t have a choice between mastectomy or lumpectomy with high surveillance. What about the stories of all the women who can’t reconstruct their breasts yet because of the effects that radiation has had on their skin or the mom with 3 children who was expecting to wake up from surgery with new “foobs” only to be told that reconstruction was the least of her worries…..her breast cancer had metastasized? These women endure chemotherapy, radiation, and mastectomies and more times than not, they don’t have a lot of options.

I’m the lucky one so far. Because of the BRCA1+ gene, my doctors and I knew my risks years ago. I had the opportunity to have high surveillance. We were like the military….waiting for the enemy to cross those lines. When it did, we had a plan. I had a choice where most breast cancer patients don’t. Although the doctors felt like all the bad stuff was removed during my biopsies, I chose to continue with a bilateral mastectomy. I had other options; I could have done radiation and waited for cancer to strike again. As of now, chemo isn’t in my immediate future and neither are long radiation treatment schedules. And although that is subject to change depending on the sentinel node biopsy, right now….I have a choice.

These women’s stories that I mentioned? They need to be told because they are stories of true courage and strength. Cindy’s story. Michelle’s story. Jill’s story. Donna’s story.  These women are true inspirations and I am blessed to have met them all.  

I try to keep all these ladies’ in the forefronts of my mind when I start feeling overwhelmed or scared. I know they have been there, too. Our stories are all different, but the same. Could my story help impact another woman faced with these decisions? I’m not sure right now because I’m just trying to process all of this. I have to help empower myself to have the courage to go through with this surgery and wait for more biopsy results, which was one of the reasons I signed up for the walk. I just don’t know how to empower others when I feel like I’ve just begun this journey myself.

I'm sure that this organization will tell the stories of many Cindys, Michelles, Jills, and Donnas. And they should. I just don't know about sharing Amy's story.

I haven't responded to her yet.

Two down....

Only one more pre-op to go!

Pre-Op #2 was this past Friday with my breast surgeon, Dr. P. First of all, let me just say that if you don’t already know, I love this surgeon. I knew that it would be a great appointment because it feels more like visiting a friend. I’ve gotten to know this surgeon over the last 3 years and vice versa. It is very easy for me to talk candidly and honestly with him and not feel embarrassed or reserved. Having said that, I also knew this appointment would probably be difficult because of the subject at hand. This appointment would not be focused on reconstruction, obviously. This pre-surgical appointment for a bilateral mastectomy with Sentinel Node Biopsy spent little time discussing the actual mastectomy procedure since it’s pretty cut and dry (no pun intended!). We spent a lot of time talking about the Sentinel Node Biopsy, procedures and possible outcomes. The “possible outcomes” meant possible cancer diagnosis and treatments.

Over the last few months, you’ve gotten a glimpse of the processes that sometimes consume my brain. Dealing with an upcoming mastectomy has been difficult for me. Dealing with the added information that I’m in a waiting pattern (AGAIN!) to find out if I have breast cancer in my lymph nodes is another beast in itself. When I first began blogging, we had determined that surgery was my best option given my history and my genetic predisposition, BRCA1+. All the bad stuff was supposedly removed during those awful biopsies, so my double mastectomy was more preventative than treatment. I knew that if I didn’t have the mastectomies, it would only be a matter of time before breast cancer would return, and the fear that drove me to this decision was that the cancer would return with a vengeance.

Dr. P talked in great length about this testing. After the lymph nodes are mapped with the radioactive dye, he would remove 3-5 and sent them to pathology immediately. There, they would be instantly frozen for testing. My surgeon will have a preliminary pathology report, about 90% accurate, in his hands before the mastectomy part of the surgery is complete.

Should they find evidence of cancer in the Sentinel Nodes, the surgeon would then perform a lymph node dissection to determine how many other nodes were affected. This would happen during the mastectomy-portion of the surgery. He would remove any them immediately. I would probably not have an expander placed on my left side if this were to happen because I would need to have radiation. The extents of treatment would be determined by how many lymph nodes were ultimately removed and further pathology reports. Ward wouldn’t even find all this out until it was over.

Should the sentinel nodes come back clean (Dr. talk for “no signs of cancer”), then Dr. P would complete the mastectomy (estimated 2.5 hrs.), turn it over to Dr. A for placement of both expanders and reconstruction, and go talk to Ward and family that will be waiting. I’d be all set while we wait for the full pathology report. It takes about a week to come back. All breast tissue, nipples, and the sentinel nodes would be extensively tested. Should everything come back negative for cancer, then I just enjoy the reconstruction process. Should it come back positive for cancer, well, then we’ll move onto oncology for more treatment options.

Dr. P and I both feel pretty sure that everything will come back nagative and I'll be on the road to recovery. There's just that chance.

One thing I know about this whole thing is that there are a lot of chances for any number of different things that could happen during this entire process. Anything can happen. Of course, that rings true even in normal circumstances! :)

Now, I only have the anesthesia pre-op left to do. I will be making a trip to the hospital the day before surgery to get that one out of the way. That appointment is on Halloween......I wonder if they'll just tell me this has been all one big trick!  Hahaha....that was a pretty bad joke. :)

I'm the one who will get the best treat. No cancer and nice, new boobs!

As of today, we are 3 weeks away.

One down....

Pre-op appointment, that is!

Ward and I met with my plastic surgeon yesterday to go over the first phase of reconstruction and finalize everything for surgery.  I was so happy that Ward was able to come and ask questions, too. We were there for about 2 hours. It is so nice to feel so comfortable with your doctors, and I do with both of my surgeons.

We talked about what would happen, step by step, after the Sentinel Node Biopsy and Mastectomies were completed. Everything from incision locations to expander placement, the use of Alloderm or not, drains (BOOOO!), physical therapy, and follow-ups. We talked about possible complications and actions to take should they occur. He addressed my emotional well-being after surgery, which was a nice surprise.

In my experience, some doctors will not even acknowledge emotional issues, unless you count a referral to a Psychologist as acknowledgement.  It made me feel even more at ease when Dr. A talked to me about my feelings surrounding this surgery and things to come. He told us that physically, I would heal relatively fast. Barring any complications, of course. Emotionally, however, it will take some adjustment. I didn’t share with him that my anxiety was through the roof yesterday morning but I’m sure he already knew.

We talked about nipples. The first and only time I saw Dr. A, I had just been diagnosed and was completely overwhelmed….physically, emotionally, medically, and then some. We discussed the nipple-sparing option and although I’m not the best candidate for it, I was adamant that we try to save them. Well, that’s changed now.

I think at first, I was desperate to hold on to anything I could. I knew I was losing my breasts, but if I could just keep my nipples, I had something left of me. Maybe I wouldn’t look down at my scarred chest and feel like a freak or less-than as a woman if I had my own nipples.  I had done plenty of research between the time of diagnosis and my first appointment with the surgeon, and the pictures of mastectomy & reconstruction scared me beyond words. It was terrifying to me.

My feelings towards my nipples are still the same on some level, but I think I am successfully processing my decision for mastectomy. I can let them go now. If I decided to try & keep them, it would be a risky & difficult healing process with no guarantee that they would survive. Even if they did survive, I would have no feeling in them and they wouldn’t look or react the same. So why bother? The whole point of this surgery is to lower my risk of breast cancer returning. If I’m going so far as to remove my breasts, one of which has had no abnormal findings on mammos or MRIs, then why would I want to try to save nipples that contain more breast tissue? Finally, my  sane brain is making a comeback over the emotional one!  

Yesterday’s appointment was still extremely emotional for me. I can busy myself and not think about the surgery, but these appointments kind of throw things in your face and you HAVE to deal with them. I cried a lot yesterday and admitted to Ward that I was scared. I’m sure my anxiety will increase as surgery gets closer, but I am really trying to accept all this and come to terms with it. I officially have less than 4 weeks before surgery and the time is now flying by.

So tomorrow I have pre-op #2 with my breast surgeon, Dr. P. I’ll be back to keep everyone updated on how that one goes.

A bump in the road?

So if I'm not posting, then things are sailing right along! :)

I've been blissfully busy with the kids, the birthdays, the homework, Jessica's volleyball, Paige's wrestling, our Girl Scout Troop, work, the house, the cats, the wedding.....YAY! I feel blessed to be so busy-physically and emotionally. It doesn't leave a lot of time for dwelling on things to come. We should all "live for today" anyway and I've been practicing.

Yep, all has been pretty good. I only had a little drama last week, but it's changed the course of surgery and recovery to come. Not a major change, but a change nonetheless.

Last week at work, I felt something. A strange sensation around my left breast. It was almost an itch, but not quite. It was strange to say the least. So I take myself to the bathroom to check it out. I've certainly never felt anything like it before and now I was curious. When I peek into my bra, I immediately notice blood-tinged discharge from my nipple.

It wasn't a lot, but some had dried in my bra. That let me know that it had been "leaking" throughout the morning. Did I freak out? A little, yes! I had a complete hysterectomy over 4 years ago and my HRT certainly isn't strong enough to create any kind of anything to be able to leak from my breast. I'm well aware that I am scheduled for a bilateral mastectomy on November 1, but I scheduled an appointment with my breast surgeon immediately. Knowing that there was/is cancer in my left breast, I certainly wasn't going to not say anything.

Dr. P's office scheduled me Friday. I get there and unrobe. We chit-chat while I'm in my paper smock, and we're talking about the wedding. We had just gotten his RSVP from his wife and we're so excited & blessed that this wonderful surgeon and his wife will share our day! It wouldn't be happening if it weren't for him. <3

Anyway...he checks out both breasts and tells me what I figured he would. Since I'm having a  bilateral mastectomy in less than 6 weeks, we won't bother with more Breast MRI's and Biopsies. (YAY!) Dr. P explains that the discharge I see is normal for a woman who had all kinds of issues (asymmetrical benign breast fibroadenoma, microcalcifications, multiple intraductal papillomas, and a little DCIS) with that left breast.

He feels it necessary to perform a Sentinel Node Biopsy now on the left side. I don't blame him. So in addition to the double mastectomy, placement of temporary expanders, and nipple removal, we are going to add one more procedure to the pot. At the beginning of surgery, the will inject radioactive dye into that left nipple so that the fluid will "light up" my sentinel nodes. He will remove a few of them through and incision near my armpit and send them to pathology for immediate testing. I really, really hope I'm already under general anesthesia before they inject the dye.

Should they find evidence of cancer, I will probably have to have more lymph nodes removed and will have to add chemotherapy to all this. This procedure also carries the risk of developing lymphedema in my left arm, which causes swelling, pain, and isn't curable. I'll be praying that doesn't happen. The risk is very low since (should things come back negative) they will only be removing a few nodes.

Whatever happens, I just want to be cancer-free. I'm accepting my fate (well, my boobies' fate) and I'm praying to God that he gives me the strength to deal with all this in a healthy, positive way; no matter what the plan may be. So far, he has. I know He will continue to do so.

Roller-Coasters ROCK!

Roller-coasters at theme parks, that is! LOL! The roller-coaster of life, well, in a lot of ways, is very similar to the ones I love at Carowinds. They are both exhilarating, scary, and take your breath away. They are dangerous and give you unpredictable sensations. They are more fun when you share the experience with people you love.

First of all, I must say how grateful I am to my family and friends. I am so very lucky to have such an awesome support system and I can't express my sincere gratitude. Cancer is a humbling experience for me. I'm so head-strong and this new "ride" is surely throwing me around.

This week, I set my surgery date & time in stone. The surgeons scheduled my surgery for Tuesday, November 1, 2011 at 7:30am. I am to arrive at Presbyterian Main Hospital in uptown Charlotte by 5:30am. (So much for seeing the kids off to school that day.) I am to have nothing to eat or drink past 10:00pm on Halloween.

I amaze myself sometimes. I wonder if other people choose to "ignore" looming dips on the roller-coaster of life like I seem to do. I've been so occupied with the kids' school schedules, work schedules, and wedding planning (YAY!), that I'm still surprised that my heart drops to my stomach when the surgeon's office calls.

Anyone else out there see this pattern? It's so frustrating!! I'm fine most days. I don't blog; I don't research cancer or surgical complications. I don't talk about it. "Out of sight, out of mind." Right? Of course! I LOVE my blinders most of the time. Then, I get a "preliminary" surgery date and feel like I'm having a panic attack.

At work yesterday morning, the scheduler with my breast surgeon gave me THE date and time. What happened on my end? Instant tears. Am I dealing with this in a productive way? I sure hope so. I think I am. I feel frustrated because as soon as I deal with a certain "set" of feelings, I'm thrown through a terrifying loop on that coaster and a whole new set of thoughts & feelings emerge. But as the days and weeks pass, I know that these "drops" on the life-coaster are there. I'm not expecting them, but I accept that they are there.

I don't feel alone. God is showing me that things are happening for a reason, what I need is provided. Two perfect examples of this:

1. The American Cancer Society's annual Making Strides Against Breast Cancer walk in Charlotte, NC takes place on Saturday, October 29, 2011. The timing of this is perfect. Ward & I will return from our honeymoon on Friday, October 28. Surgery is on November 1st. I am going to have a team and walk with all these women who are heroes. This kind of inspiration is a blessing to have right before this life-saving surgery that will forever change my life.

2. The phone call yesterday that threw me through that loop? Yes, I was upset and could not focus on much afterwards. My head and heart were racing. But it didn't last too long. Yesterday evening was the Grand Opening of Cindy's Hope Chest and it was wonderful. I've mentioned Cindy before, but to see her last night was amazing. Again, it was exactly what I needed yesterday. I am so grateful to Cindy & Mike, Michelle, and the other angels that I was able to speak with last night.

Yes, I'm scared. Sometimes I think maybe I feel nauseous from all life's loops. I think I have to watch for these "God-shots" in my life and be aware of the support that I do have. I need to just say F-it, throw my hands up, and scream through those roller-coaster loops of life. It would be way more fun that way!

A Date

In the midst of getting three children ready for school, one having started last week, I get a surprise in the mailbox yesterday. In the span of three seconds, I felt like I would have a panic attack.

I received a letter from my Health Insurance company approving my "procedure" for November 1, 2011 and approving my hospital stay for 2 nights/3 days. This isn't confirmation from both surgeons, but it's just as well.

I have an official date.

November 1, 2011 will be the day. The day I say goodbye to my breasts and hello to new ones. I keep telling myself that I'll have awesome new boobs....nice, firm, symmetrical....all that jazz. I remind myself that my boobs can kill me, so they aren't that great after all. I feel like I have accepted this surgery and what's getting ready to happen, but now I'm just scared.

I've never stopped being scared, but now my fear is solidified in the date. The date that is only four days away from the day we return home from our honeymoon. The day after Halloween. 10 freakin' days after our wedding. 23 days before Thanksgiving. Geez...am I obsessing a bit?

Both surgeons had asked about the best schedule and with the timeline, we all agreed the 1st week in November would be best. I figured it would be the 3rd, 4th.....don't ask me why. I also don't know why that even matters anyway. I need to get this over with.

My FORCE friend, Kristen, just had her surgery and is doing great. She is such an inspiration! Jill had her surgery and looks awesome. Michelle is in the midst of reconstruction and is rockin'! I am so proud of these gals and they are amazing women....strong and courageous. If they can do this, I can. Right?? I guess we'll see.

People say that fear can be both oppressing and liberating. I think I'm stuck in the middle. I'm scared because I don't know what to expect. I have a good idea, but it hasn't happened to me yet. It's gone great for my friends, thank God, but it hasn't happened to me yet. I am trying to stay positive and know that I'm not alone in this. I'm allowing myself to breathe through the fear that I am sure will appear again.

For now, I have babies to get ready for school. <3

Inspiration & Reality

After my night of crying this week, I felt better. I can release that stress, worry, and anxiety for a bit and get on with life.

We're super busy at work, so that's a huge help right off the bat. My girls are spending the week with my dad and I miss them terribly. I have gotten to spend time with just the boys this week, though. That's been awesome.

Yesterday, I spent some time with my friend Cindy, the founder of Cindy's Hope Chest. This woman is another angel God has placed upon this earth. Her non-profit supports local breast cancer patients, and not in the typical way that most breast cancer organizations do. She personally spends time with women who are facing a journey of their own. Her organization helps with the things women on this journey really need like light housework, grocery shopping, treatment support, love, and hugs. Not that the other non-profits aren't great, this is just the first group I've ever seen get "personal" with their cause. I think there should be more of this! :)

Cindy was diagnosed with Stage 3 Breast Cancer in 2008. She was led to begin this wonderful organization for women and it had to be God's calling for her. She is an inspiration for me, no doubt. I contacted her before I was even diagnosed through word of mouth within my community. Every time I have called or stopped by, she has dropped everything she was doing and gave me her full attention. It's so wonderful to have her in my corner.

Although we hadn't met before this summer, we both went through chemo in 2008. She completely understood when I told her how much I hated being "identified" as a cancer patient when I lost my hair. I completely understood her when she shared that she was one of the youngest patients in the chemo-infusion lounge and most of the time, the only woman. That's not something you can truly share just have with anyone. Needless to say, it was nice to sit in the pink room with her yesterday and tell her all about my crying episode. Talk about true bonds and inspiration!

Today, I felt like myself. Started the day off great....had some coffee & took lunch with Ward. Then, reality hits. Out of no where, I get a phone call from the Plastic Surgeon's office to schedule my pre-op a month ahead of surgery. Simple enough, right? We schedule for October 5th at 10am. The nurse tells me that she will call the breast surgeon and confer with her so that both surgeons can agree on a date.

We hang up and I start crying, which immediately pissed me off. I hate when my emotions get the best of me. It is so very weird. I'll be just fine through my day and then BAM! Reality of this surgery...this cancer...comes back around to say "Hello!".

That wasn't even the kicker. My Breast Surgeon's office calls me and the lady on the phone says that although so-and-so is going to confirm all this with my insurance, I need to be aware that I will have to pay what insurance doesn't before surgery. It's their new policy. That was pretty unexpected, but having had some time to think about it, I'm just glad I'm finding out about it now and not in October. So if insurance pays 80%, I'm sitting here wondering what my 20% of his surgery fee will be. I totally hate math. LOL!

Hopefully, the ladies in these offices can sort out all these details soon and I can get back to not thinking about all this  for a bit.

Where's the Strength During the Rain?

It amazes me; how human we are.

I don't understand how I am so strong one day and feel so seemingly weak the next. OK, all in the same day? Tonight is one of those nights that I am struggling to hold on to something and release this self-doubt, fear, and denial. It's not working.

I've re-read some of my earlier postings, I've remembered conversations with inspirational friends and family, I've prayed. I'm allowing myself to cry tonight. The girls are away. Ward and Allen are in bed. I'm listening to distant thunder, the tapping of the rain outside, and my sniffles. I want to scream.

Maybe I'm in the throws of the grieving process? I'm not really sure. I want to know why this is happening to me. Why now? Answers that I really don't need to have because it just is. I've accepted that Cancer is no one's fault, it just happens, like everything else. I sure am angry at Cancer, though. I haven't allowed myself to let go of that just yet. I'm angry that I have to make these kinds of decisions.....talk about pressure. It's only your life and the loved ones your life affects. I mean, sure, I had no plans in November and December. Why not have surgery. I'm angry that my childrens' lives will be disrupted during the holidays. I'm angry that I will miss 2 months of salary. I'm angry that this is a huge inconvenience to me (and probably only me because my perception is so skewed at the moment). I'm angry that I have no f***ing control over any of this.

 My friend Kristen, who I met on through FORCE, is having her double mastectomy tomorrow. We've emailed, text, and finally spoke to one another on the phone tonight. I'm really thinking of her right now. I want to tell her how brave I think she is that's she's kicking cancer's ass tomorrow. I think she's so smart to make an informative decision to save her life. After all, they're just boobs. I know she'll come through her surgery, recover with no complications, and have a great set of brand new, cancer-free hooters. :)

So why can't I have this same compassion for myself? I do most of the time, when my rational brain is working. Tonight, the emotional & the I-need-to-control-everything side of me has taken over. I hate this feeling of helplessness.It affects a lot of things in my life and I really need to stop pushing these feelings deep down until they explode like a volcano in the rain. I can cry for an hour solid when this happens. Maybe that's what needs to happen....a release of all this bullshit that I carry on my shoulders?

I know I'm not the only one. I think most women facing any kind of breast cancer or even a high risk of breast cancer could probably relate. Maybe that's why it's so easy to bond with a fellow "sister". If anything good comes from Cancer, that's it.

My sister in this journey crosses the other side tomorrow and begins her reconstruction. I'm ready to go with her already and not give my emotions a chance to bulldoze me. Unfortunately, it's not time for me yet. So for now, I'll finish crying, vent randomly on this blog, and go to bed a little later.

The storm will pass and the rain will stop. Maybe in the sunshine tomorrow, I'll find where I misplaced that strength tonight.

History lesson with Ward & Amy

I haven't posted in a while, and I've missed it!

I've been busy, like everyone else in this super-fast world, dealing with life on life's terms. Well, trying to. Between working insane hours, fighting with the local school board to transfer my youngest daughter out of a bad school, planning our wedding, and trying to find quality time with the family, I'm plenty occupied.

Ward & I are getting married on October 22. We've been together since 2007. Since that time, we've endured more than most couples face in an entire lifetime. If you don't know us, here's a run-down of what's happened with us.

My stage 1 Bladder Cancer was discovered in early 2007. I endured intra-bladder chemotherapy, but it was light and I really didn't have any "chemo" side effects. The worst of it was having to have catheters for treatment. It was during this time that I discovered that I was positive for the BRCA1 gene. July 2007, I had a complete hysterectomy at the age of 29.

In September of 2008, we discovered that my Bladder Cancer had returned. My new doctors in Charlotte didn't believe that it ever really went into remission, so I was to go through 6 rounds of aggressive chemo. 2 weeks on, 2 weeks off. Being my stubborn self, I decided against a port, so this poison would course through my veins and ruin them. The weeks that I had treatment, I barely got out of the bed. Everything tasted like metal and worst of all, my hair fell out.

I HATED that. Everyone knew I had cancer, even strangers. You could tell I was sick anyway without that hat I wore ALL the time. I felt everyone's pity. I felt "defined" and I hated every second of it. People told me that I was strong, brave, and an inspiration. I sure didn't feel that way inside....I wanted to hide from the world. I wouldn't let people take my picture...I'm missing in all our Christmas pictures in 2008. I didn't hide all the time like I wanted to....I couldn't. I still went to work on my "off" weeks. Looking back, I don't know how I did it.

Anyway, I went into remission in February of 2009. In March, Ward got sick. He was having severe stomach pains. After trips to doctors and a bad ER trip in early April 2009, he was diagnosed with Crohn's disease. That ER trip in April ended up being an admission. In an attempt to get his "flare" under control, the doctors gave him massive doses of steroids, to no avail. He ended up having a re-section surgery mid-month.

They removed 14 inches of his small intestine & colon. The night he was supposed to come home, the surgery failed. His intestines came apart, everything that was in his stomach seeped into his body, & he became septic. I was called early Friday morning to learn that my best friend, who was coming home that day, had been rushed to ICU.

Ward needed emergency surgery. He actually died on the table. Our surgeon, Dr. P, was able to bring him back, although he didn't know that Ward would make it through the night. They tried to clean him out as best they could before he crashed, but didn't get everything. They also couldn't reattach the intestines. Ward had an ileostomy and bag. Maybe they could reverse it if he made it.

He pulled through...he's so stubborn. LOL! He stayed in the hospital for a total of 6 weeks. He did well with his ileostomy and was able to have it reversed in a third surgery in October 2009.

During all this, we were still raising our five children together and working. People asked us all the time how we managed. Well, our relationship with God became strong that year. Our family & friends were lifelines to us....we could never say thank you enough.

Needless to say, 2010 was a pretty uneventful year as far as our health was concerned. My mother's kidneys were failing, so we moved her to an assisted living place close to our home and I've accompanied her to many surgeries over the last year.

 Ward & I began planning this wedding...this melding of our families in a celebration with our friends and family. When I was diagnosed with Breast Cancer in June, I told Ward how guilty I felt that we would start our marriage with such a major surgery. His response? "How else would we do it?" I love that guy.

So we will affirm our love on October 22. We will go away to enjoy our honeymoon, sans children (Woohoo!), in beautiful Savannah, Georgia. We will return on October 28 and I have a double mastectomy less than a week later. It's not the way I would want to start our marriage, but then again, it's a perfect start. My best friend and me....fighting cancer and kicking it's ass.

God's Angels

I knew that God's Angels walked among us and touched lives. It's just been in the last few years that I have learned to recognize the Angels that He sends to me.

When I met Jill a few months ago, I knew I would like her. She moved to North Carolina from Connecticut this year, her husband had been transferred with his job. She has a great personality and talking with her was always fun. I never knew how much she would impact my life, especially in a short amount of time.

When the Doctors' found the "suspicious" spots in my Breast MRI and prepared me for an early-stage breast cancer diagnosis last month, Jill was my cheerleader. She revealed that she was a Survivor. She had chemo for a Stage 1 Ductal-invasive mass and subsequent double mastectomy and reconstruction. I was stunned. I never had any idea and she looked amazing.

Over the last month, Jill and I have had many in-depth, personal conversations. I could ask her anything, regardless of how stupid I thought the question was. I could cry and confide my inner-most fears. She always understood because she's been there. She was and is a lifeline for me.

I found out 2 weeks ago that she & her husband had to move back to Connecticut and the move would happen by July 12th. I was devastated, especially since we had just bonded! I knew we would stay in touch, but there was a part of me that hated losing such a huge support system, especially in all the "newness" of Breast Cancer.

We tried a few times to get together, but we just never could. She was dealing with movers and the stress that comes with that (let alone planning an interstate move in less than 2 weeks!), and I was dealing with our busy life since the beach.

Today, less than 2 days before she moves, she found the time to come visit with me. She met all the kids, even my mom. We chit-chatted about my upcoming wedding and had some conversation with the kids.

We sat down at my kitchen table and talked about all the information I had, my new plastic surgeon, and what her mastectomy and reconstruction experience was like. It was wonderful listening to my friend talk. The surgeries seemed "doable". Jill had survived all this....the surgery, the wait, the healing....and came out on the other side, beautiful and strong.

Then she asked me if I wanted to see. YES. I wanted to see what happened to her. Was it as bad as some of the reconstructions that I saw on the Internet? Have I been scaring myself with all this research or did I have a reason to be so scared?

We went to my son's bedroom and I caught myself holding my breath while she pulled her shirt down.

She looked amazing. Her boobs looked real. She didn't have nipples, but still had her areola on each breast. She had a couple scars, but they were small and pretty unnoticeable. Her breasts were symmetric, full, and firm. Then she says, "Amy,  you need to feel them.". I was scared to, but I did.

Just when I thought it wasn't possible, I was even more amazed. Her breasts even felt real! She showed me how they don't sag as much, they don't move as much if she jumps up & down, and showed me where the Alloderm slings were. We talked all about our procedures. She had everything that I am getting ready to have....mastectomy, expanders, silicone implants, the whole 9.

I can't tell you how much better I feel about this surgery now. Jill knows, like you do, how much I have been struggling with all of this. She told me that it was important to her that she see me before she left to show me what I was facing. Thanks to her, the cosmetic hang-ups surrounding breast reconstruction that I thought were such a big deal, disappeared this afternoon.

I know that Jill is one of God's Angels. She came into my life when I needed her the most. I'm not as upset that she is leaving...after all, today, she set me free. I am so blessed to have met her when I did. I know that it was all part of His plan.

 I'm so grateful to be graced with and recognize one of God's Angels. It's truly a blessing in cloudy times.

The Fence

Vacation is great for the body, mind, and soul.

    Even with 5 children (well, 6 if you count Ward) in tow. I can't tell you how much we all needed to get away. It was wonderful spending time with Ward and the children. We swam in the pool & the ocean every day. We rode waves on our boogie boards. We built a sandcastle with a huge wall & trench around it, only to enjoy the wait to see how long it could withstand the in-coming tide. We looked for and found little crabs. We sunbathed (with lots of SPF 50 slathered on!) in our lounge chairs while listening to the sounds of the ocean and laughing children. We searched for seashells one evening. Ward & I even got to take a stroll on the beach by ourselves one night (thank you, Paige!) to hold hands, talk, and feel the waves and sand on our feet. We even surprised all the kids with a special "dinner & pirate show" treat, front row! It truly was the best vacations we've ever had as a family and one that I won't ever forget.

    I'd like to tell you that I was able to "totally" get away from reality for a whole week, but I can't honestly tell you that. Boobs are everywhere, and when they are on you're mind, it's easy to notice them. Geez...is that what men think? LOL!

    It's not easy to admit this, but I noticed almost every woman's boobs last week. That's a powerful statement considering I was at the beach for an entire week. I've never paid attention to other breasts before, unless some fake Barbie-doll wannabe was on a sleazy talk show and you had no choice but to notice. I didn't want to notice others then and I don't want to now. I just couldn't help myself.  I noticed shape and how they moved. I wondered which ones were fake and which ones were real. Some were obvious....I hope my new ones aren't obvious. Will mine look real? Will they look OK in a bathing suit? Maybe they would look better? Will I be finished "expanding" and have my implants in long enough to enjoy the beach next year? Will they have natural movement or just sit on top of my chest? How many of these women were Breast Cancer Survivors? Was I really feeling jealousy towards some of these women? Women who would get to keep their breasts, never giving them a second thought?

    The cosmetic aftermath of a mastectomy is on my mind more than the procedure. Self-doubt crept in again, damn it. When we arrived home, we were totally exhausted and I felt like I picked up my "load of bricks" as soon as I walked through the front door. I knew at that moment that I was officially "On the Fence". I would talk myself out of the mastectomy, only to talk myself right back into it. Talk about torturing yourself. I was telling myself that maybe radiation treatments wouldn't be so bad with continued surveillance. We went 4 years before finding anything. I don't want to look different or feel different! Then, my brain would kick in. HELLO!!!! This is CANCER we are talking about!! Radiation would suck and make a mastectomy a lot more complicated if I were ever to "need" one in the future. I'm playing with fire and I have to stop this and think about my family. The cosmetic issue is way bigger that I ever thought! Is it vain to think about cosmetic results when in all reality, we're talking about my life! I know deep down this is the best option for me, I just like sitting on the fence I guess.

    The books I had ordered before vacation were waiting on me when I got home and I breezed through one of them in two days. A wonderful book by Geralyn Lucus, "Why I Wore Lipstick to my Mastectomy". Talk about inspiration. If any of you out there need a good book, I highly recommend that one.

    I've tried to ease myself back into the swing of things, and thank goodness things at work are hectic. Maybe my mind will relax some and I can keep blogging, talking this out with loved ones, and continued to be inspired. Inspiration may be some of what I need to stay off that fence! Until then, I'll just keep praying for Him to help me let go & accept this.

It's ok.....

I think that's been my lesson of the week, one of many to come I'm sure. It's ok to grieve, feel overwhelmed, to be scared, to be terrified, to cry, to mourn, to sob uncontrollably. I have to allow myself these very normal feelings so that I can have the "other ok's".

The "other oks"....it's ok to laugh, to have fun, to enjoy my children, to hold hands with Ward, to sing, to be grateful for all of the encouraging messages of love and support from family & friends (which gives me strength and peace), to notice the new flowers, to feel the wind in my long hair, to take a bubble bath, and live in the moment of the day.

Being thrust upon Breast Cancer's door can make it very difficult to balance all of these "ok's". I'll freely admit, it has been beyond difficult for me at times. There's a reason my dad called me "Grace" as a child....it wasn't because of my gracefulness or ability to "balance" myself for sure! :-)

Saturday was really tough. Sunday was a little better, everyday since a little better. Today, I'm in my "Wonder Woman" mode, like most of us wives/sisters/mothers out there who have to be in control, of something or anything.

In all reality, there is no control. Not in life, not in a cancer diagnosis. There's that illusion of it and sometimes, it's wonderful. Other times, it's a nightmare. Today, I am just staying in today and not dwelling on what will be in 4 months.

Maybe it's because we are going on a week long beach trip Saturday? Probably....we can't wait to get away and we need it desperately. (YAY VACATION!)
Maybe it's because of all the support I have from my dear friends and family, which I am truly grateful.
Maybe it's because Ward & I sat down and REALLY discussed all this, in depth, for the first time this week.
Maybe it's because I became a little more proactive and ordered some informative & personal books for both me & Ward (thank you to the ladies at FORCE) to help educate ourselves and become inspired.
Maybe it's all of the above.

And you know what???
It's ok.

Out of the blue...

I don't know exactly what happened today, but I had a bad day. Emotionally speaking.

Granted, I've had an eventful month so far. It's not very often that you are thrust into the Breast Cancer sisterhood. You don't usually talk about mastectomies and reconstructions during day-to-day conversations. I'll give myself a break in that respect.

I hope blogging about all this will help and I'm getting ready to really bare my soul, which is not something I publicly do. Ever. I'm not even sure that I can articulate the devastation I feel inside.

I've kept a positive attitude since all this began on June 1st, I've really tried my best. I've had moments of tears, but nothing like what happened this afternoon. I don't know what happened or what set it off, I really don't.

I went to work this morning to work a half day or so, trying to make some lost time and get a jump on some upcoming deadlines. I wasn't feeling good all day. My brain wouldn't shut off from all this information I've received in the last few weeks.

On the way home, I had a total breakdown. It was bad....complete, hysterically sobbing kind of breakdown.  I'm so glad that Ward & I work together, at least I wasn't driving today. He is the most compassionate man I know and I can't imagine how helpless he must feel through all of this.

During my hysterical crying, I spilled my deepest fears to him about this whole reconstruction process with expanders. I'm going to look like a freak, I will never have MY breasts anymore, how will I hug him and the children during all this? Will I look anything close to normal after complete reconstruction? How do I accept this and say goodbye to the old me? Am I helping or hurting myself by researching this?

I told him that in the grand scheme of things, I know deep down I am making the right decision. This will save my life and I want to be here for our family. More than anything. I know I have his unconditional love and support, and that goes for my children, family, & friends.

So why the hell am I so upset over all this? It's not happening today. They are just boobs! It seems so trivial to be so upset at what I'm considering "trivial", when the end result is to be cancer free.

 I'm freaking out about the cosmetic realities of this surgery. Looking down after surgery and there's nothing there. The discomfort and pain of expanders placed in my chest. Growing "foobs". Getting my real foobs. I'm freaking out about the surgery, the recovery process, the expanding process. What will I look like during that time? What will people think and why the hell would I even care?!? What about when the real implants are there?

Some days, being positive and staying in the moment just doesn't help no matter how hard I try. I really don't try to project anything concerning things I have no control over. For some reason, I am today. I am so scared about all of this, and it's not even happening until November. I feel like I am on an out of control roller coaster and I really don't want to feel like this for the next few months. I want a shut-off switch for my brain. I want to just pretend none of this is happening and just deal with it later. I mean, damn. You would think with 5 children, a job, house, gardens full of weeds, and a wedding to plan, I would have plenty to be distracted.

I feel like I am being consumed by this, and that's exactly what I don't want to happen. I just pray that tomorrow will be a better day.