Don't take squishy boobs for granted...

Progress! It's only been a couple of weeks (not a month) since my last blog! Woohoo! Boy, have there been some developments. Things are moving pretty fast again.

First of all, I just want to say thank you to the people who reached out to me after my last blog. I'm not going to name any names, but the messages & phone calls meant a lot. Thank you. I want everyone to know that I really am ok. Even on my bad days, I'm still thankful for all the gifts God has given to me. Bad days are just that.....bad. Blogging helps me (when I remember to do it) work through these feelings that ramble through my head. I'm just thankful to have so many people who care about me. :)

Second of all, I have a huge announcement. My exchange surgery is FINALLY scheduled. YAY!!! I'll be ditching these rock-hard, heavy, misshapen mounds for soft, subtle, SQUISHY, silicone implants on Monday, March 19, 2012 at 10:30am. It will be an out-patient procedure at Presbyterian Main Hospital in uptown Charlotte. I cannot express how excited I am!

That has made me feel a lot better and it gives me something to look forward to. I am nervous, too, I can't lie. There's always concern anytime you have to be intubated with anesthesia and I'm concerned about the "after" results. I realize that there will be more adjusting, more grieving of what was, and some patience to settle into my new breasts. BUT...I will be rid of these expanders! That's the best part and believe me, NEVER AGAIN will I take squishy boobs for granted. I swear that's my new slogan. I'm telling all my friends....don't take your squishy boobs for granted! Someone needs to make a T-shirt!

My third bit of info isn't as happy. After seeing Dr. Appel for my pre-op check, and his thorough examination of my arm, he confirmed my fear. I have developed mild lymphedema in my left arm, even though he said that only 5% of women with a Sentinel Node Biopsy develop this condition. My hands were still swollen that morning and my wedding rings wouldn't budge. He prescribed me some Dilaudid to take at night to help me sleep and sent an order to physical therapy for treatment of the lymphedema. I asked him about a compression sleeve to wear for treatment, but he said that the sleeves were used more for moderate cases. I could go back to Peggy for manual lymphatic draining, so I was happy to have a plan. He said that it we could effectively treat it, we could probably prevent it from becoming a moderate case. Thank goodness!

When I went to PT, I didn't think I was swollen. I could take my rings off and had good range of motion, so I was surprised when Peggy told me that she could tell that my arm and shoulder were swollen. She took some measurements and quickly agreed with Dr. Appel's diagnosis. That was a bummer. She did not agree with his statement about compression sleeves for treatment.

Let me break from this for a quick second and just say that there is a lot of debate within the medical community concerning lymphedema, lymph node removal, and all that. It can attack someone randomly after axillary lymph node biopsy/removal. Someone with only 1 node can be affected, so can a person that has had 20 removed. The same is true in the opposite scenario. Some people say that compression sleeves are a great preventative treatment, some say only in extreme cases. There are different studies to verify both theories, but there hasn't been enough research on this subject to have a concrete conclusion.

Back to Peggy- she was going to do some manual draining, which was very painful, and she was also going to check with my insurance for a referral to the lymphedema clinic. She thinks (and I agree) that I would benefit from a compression sleeve. It will help what is already swollen and hopefully help or prevent any more fluid from collecting in my arm and hand. Summer time is not far away and I know that heat has to make it worse if this is anything like regular edema. I'll find out on Thursday if I'm going to the clinic before or after my exchange surgery.

A lot has happened in the last couple of weeks and that's been a good thing for me. The physical therapy and lymphedema have also slowed me down in regards to soreness. It kept me from going to my dear friend Laura's 1 year anniversary party. Missing that really sucked. I'm frustrated that I have to go back to physical therapy twice a week and miss more work. I feel like I need to be working more, especially since I learned that I was out of FMLA time, but my schedule is what it is. I'm trying to not stress about this for two reasons. One, everything will work out...I know it will because it always does. Two, if I don't take the time to focus on myself and take care of me; I'm not going to do anyone any good. Not work, not the house, not the kids, not my husband. Ward has been such a wonderful support- he encourages me when I need it most and picks up my slack whenever he can.

Am I still exhausted? Some days. It has gotten better since I have nighttime pain medicine. I can usually get between 4 or 5 hours of good sleep before I'm up & down. That's a big improvement, but still not what I would say a good night's sleep was. I am aching to sleep on my belly! Do I still feel lost? Yes, some days. My sleep is better, my pain is more manageable, and I'm still seeing my counselor so all that is helping a lot. Again, it's a process. Am I still having self-image doubts? Yes. That one may take a little time. Do I feel stuck? Sometimes....but I have something today that I didn't have a couple weeks ago & that's a countdown.

13 days until I have squishy boobs!

The break I never wanted

So I said I would post more and yet I've done the exact opposite. I think I'm lost and trying to navigate my way back to my new normal. The last 6 weeks have been very eventful in regards to my daily routine. I've gone back to work full time, although my first week back my children decided to share a nasty cold with me. I've finished expanding after reaching a whopping 790cc's in each side. Physical therapy discharged me because my range of motion in both arms was above 170 degrees. Sounds like things are pretty good, right? That statement couldn't be farther from the truth.

In my last blog, well over a month ago, I talked about grieving and the wonderful counselor I see seems to think I'm still grieving. All I know is that I seem to be shutting down emotionally.

Although I'm back at work, I never imagined it would be this difficult. I felt a lot of pressure to return to work, and in all actuality, I should've listened to my dad (AGAIN!). He tried to tell me that I should just stay out until my exchange surgery, which is slated for mid-March. I argued with him, which I apparently love doing, explaining that I was feeling better and was going stir-crazy in the house. Plus, financially, we are struggling. Short-term disability only paid a fraction of my normal pay, and though we were stretched to the max, we were making it.

So my hard-headed self went back to work. While trying to adjust to my schedule, I began to realize that I was in trouble. It's no secret that trying to get a good night's sleep is very difficult when your turtle shells are overexpanded. But add some problems with my left side and it's damn near impossible.

I've had issues with my left arm since my mastectomy surgery in November. My range of motion was always less and it's always hurt. While I was seeing my physical therapist, we had a hard time deciding what was wrong- was it a pinched nerve from the expander? Was it muscular pain? It seemed likely to be a nerve since the pain I was feeling started in my left chest, traveled through my armpit with intensity and radiated through my lower arm to my elbow. Towards the end of my time with Peggy, she found (felt) evidence of cording. Technically, it would be Auxiliary Web Syndrome. In laments terms, it means that the lymphatic drains on my left side have developed scar tissue due to the sentinel node biopsy that was performed during my mastectomy.

Since I've stopped seeing my physical therapist, the pain has gotten substantially worse. My range of motion is declining once again and this morning, my hand was swollen to the point that my wedding rings wouldn't budge. That is super scary because the first thought that raced through my mind was lymphedema- a condition where the lymph fluid can't drain propery and there's no cure once you have it.

All these factors- increasing pain, decreasing sleep, full-time work, house, & kids- have made me a miserable person. I think all this is wearing on me and my emotional state.

I'm very frustrated that this is happening and I'm still a month away from exchange. I'm so exhausted that I have to push myself just to function through the day. Although I take pain medicine and muscle relaxers on a daily basis, it barely puts a dent in my pain level and sleep is impossible. I'm so tired that I fall asleep pretty quickly but I'm constantly waking up throughout the night.

My emotional state isn't much better. This is, by far, the hardest thing I've ever done. I still struggle to look at myself in the mirror. In a shirt, I look ok. Similar to the old me, just a little smaller and a lot more perkier. Just out of the shower, though, it still brings me to tears. Don't get me wrong, I'm SO happy that I'm cancer free. I KNOW that I made the right decision to have a bilateral mastectomy. BUT....I'm still second-guessing myself some days, wondering "what if?". I feel so "less-than". I miss my breasts and it's hard to see these weird, heavy, tight mounds that sit upon my chest. Instead of nipples, I have angry, red scars that still scream out at me. I have an ache deep down in my gut that tells me I'm missing something.

I knew going into this that I would have to get used to a new normal, I just never imagined it would be so difficult. Of course, there's no way to prepare for this sorta thing. I don't like these feelings of being stuck, of hating the way I look, feeling unattractive. The word "sexy" doesn't exist to me right now. (My loving, patient husband would strongly disagree.) I really do feel lost. Like I'm barely keeping my head above water.

My friend Laura still checks on me, almost daily, and I love her. I can spill my guts to her and she GETS it. I'm so blessed to have her. I'm seeing a counselor at the Buddy Kemp Caring House at least every other week. I've made reservations to 2 support groups for next week. I blogged today. Hopefully these little steps are steps in the right direction, to lead me out of this fog and back to my happy life. I really do have so much to be grateful for and I am.

I see Dr. Appel again on Wednesday and I can't wait. I've really missed him over the last 4 weeks! I spoke with him today and he wanted to know how I was doing. I told him all about my arm and he's placing an order for me to get back to physical therapy. He said we would talk in detail about it when he saw me next week. I'm sure he'll want to check out this arm...you can actually see the cording when I lift it. Weird!

So there is progress being made, even though it's baby steps. I'm sure once I can control this pain, get into PT, and get some MUCH needed sleep, I'll feel like my old self again. That's gonna be good because I sure do miss Amy.

Getting Real

It's been a while since I've blogged....again. I've had a lot of progress with expansion in the last month, and some setbacks I wasn't quite expecting. Taking the advice of a wonderful friend who is also on this journey, I'm getting real with myself and plan to blog more. I will update everyone about the fills, aka expansion process, a little later. This blog entry is about bringing you up to date on my experience with the emotional side of a double mastectomy and reconstruction.

Let me preface this, like my friend did when she posted her similar experience, with saying that what you are about to read should not be misinterpreted as a pity party, a cry for help, me feeling sorry for myself or anything like that. Please understand that I am simply going to try to articulate some very real things that I have been processing over the last few weeks.

I have been told by countless people, friends, and family (whom I adore!), that I have been "so strong", "an inspiration", and "brave". While I appreciate these terms of endearment, I feel like I have purposely tried to project all those things outwardly. Inside however, unbeknownst to those closest to me, including my husband, I have been having lots of feelings that I didn't want anyone to know about. Hiding negative feelings is not a good thing at all. Hiding negative feelings for an extended amount of time can be even worse. I have been suppressing true, heartfelt issues since I was released from the hospital and the first bandages were removed.

I broke down last week after shutting down emotionally for a couple of days and finally told my husband, Ward, what was going on inside my head. Although he had a feeling of what was going on, I don't think he could've known what I really thought about my mastectomy and my body image. He even admitted that I had done a pretty good job of concealing my feelings. And believe me; I never intended to keep anything from this man. I felt that if I could just keep focusing on the positives, these negative things would resolve on their own. That was a mistake.

To be honest, some days it is very hard to look at the wreckage that is now my chest. You guys have seen the pictures that I've posted. Don't get me wrong, I'm SO VERY PLEASED WITH MY PROGRESS. I think the reconstruction is going great and I know that my ending result is going to be awesome. I trust Dr. Appel and I do think he is an extremely talented and caring plastic surgeon. I like the way I am filling out in my clothes and I really am excited about the end goal.

I know that my breasts don't define me. I know that I've been told many times I still look great. They're just boobs. I've told myself these things and other people have said these things, so I get it. But the reality of the situation is that my breasts are gone. My nipples are gone. Although I have temporary expanders placed within my chest muscles that are getting bigger each week, they look nothing like breasts when I get out of the shower. Rather, they are like lopsided, misshapen, hard shells that intrude into my personal space. They don't move at all. I mean, NOT a bit. My scars haven't faded a whole lot and since my complexion is so fair, they are still pretty red. So on top of these hard, misshapen mounds that sit on my chest, I have red horizontal scars that cover these imposter boobs fully. And no nipples. Although there are more and more moments during the day that I forget about the expander's presence, I'm aware of them every day. To say that this has been a big change physically and emotionally would be a gross understatement.

From the beginning of this whole thing, I was afraid of how I would feel when the mastectomy finally happened. Although I feel like I tried to process all of this even before surgery, there was no way to ever really prepare myself.

I was afraid of feeling like this, of hating the way I looked in the mirror. I was angry about being BRCA1+ and all the "female" anatomy parts that I have lost over the years. I'm always very compassionate with myself, something that I wasn't years before, but admitting this extreme sadness, dislike, and anger felt harsh. I want to be brave and strong and ok with all of this and it upset me greatly to think that maybe I wasn't.

I reached out to my friend Laura and we met for some coffee and dessert last week after my emotional fit. It was a huge relief to know that I wasn't crazy - she had a similar breakdown before Christmas. She understood everything I said....all the feelings I have, issues that I know I will have. I understood things she talked about. She helped me so much just by listening and then by telling me personal issues she has faced. I felt a real connection to her because we both have some adjusting to do in our new bodies.

She told me about free counseling services that are offered to cancer patients, current or former, as well as to their families through the Buddy Kemp Caring House in Charlotte. She suggested that I make an appointment, which I did.

I went to counseling yesterday and met an awesome lady that was very easy to talk to. Too bad I didn't recognize the stages of grief that I was experiencing over the loss of my breasts. It never occurred to me that I was experiencing that, but I did feel a lot better. So, in taking my friends advice, I'm planning on using the next couple of weeks to seek out more counseling and maybe even go to a few support group sessions that they offer in Charlotte. They are free and I think it will help me move through all of this in a healthier, more productive way.

It's such a weird thing to be in the middle of reconstructing your breasts. On one hand, I'm amazed at my progress through the last 2 months. I've had 2 surgeries and have begun having some volume again in my chest. It's truly awesome. My energy is coming back slowly but surely. My strength is also building through PT and daily stretching. The fills I have every week are fascinating to watch.

On the other hand, I am grieving my breasts. I am frustrated that I'm not released to return to work yet. I am annoyed at the pain I have in my left arm due to some scar tissue that's accumulated in one of my lymph drains and/or the pressure of the left expander and/or possible nerve damage (they still aren't too sure what's going on). I'm still doing PT twice a week and I'm still expanding. I have trouble sleeping at night because of the hard expanders...they don't move and side sleeping is a challenge.

Now I need to learn how to have all these feelings be heard and acknowledged. I need to focus on this and learn how to accept the new breasts that we are building. It's nice to have some direction in the midst of confusion and believe me, I'm ready to get real with all this and get through it.

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.