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.
Showing posts with label double mastectomy. Show all posts
Showing posts with label double mastectomy. Show all posts
Friday, February 17, 2012
Tuesday, January 3, 2012
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.
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.
Wednesday, December 7, 2011
Week 5 & AMAZING Physical Therapy
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)
Sunday, December 4, 2011
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.
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.
Saturday, November 26, 2011
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.
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)
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)
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