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Lettuce find the right analogy

This is going to be a strange but necessary post. As this blog has progressed, I’ve put a lot of thought into how I describe the emotional, mental and physical aspects of this whole ordeal. I feel like I’ve done a pretty good job of explaining things so that you get an accurate picture of the experience. People don’t really talk about the details of breast reconstruction very much so I’ve tried my best to be very transparent and descriptive. Up until now, I’ve worked hard to find ways to explain what I mean when I say that the tissue expanders are “hard” or “firm.” I have really struggled with finding the appropriate analogy.

I have a Master of Arts in Interpersonal and Organizational Communication and I’m an adult learning specialist (ala Training Manager). Analogies are a big part of my professional life. I use them in most of my professional writing because they are effective instructional tools. I think that identifying good analogies to use in the training courses I develop is one of my professional “super powers.” I very rarely struggle with creating them to explain complex topics, but for the life of me, this expander experience has had me perplexed. Needless to say, I’ve been on a mission to find the best analogy to describe the way these things feel.

I’ve tried to use words like clay, skeet, bricks. These analogies have not been the best because they are all harder than the expanders and just don’t do them justice. I’ve even been letting friends touch them because it’s just been hard to find a good way to describe them. I giggled when I wrote that because it’s funny to think about how many times in the last few weeks I’ve said “just touch them and you’ll see what I mean.” I’ve ever been felt-up this much in my life. And trust me- there’s nothing “hot” about this. [Side note: The expanders sit high up close to my clavicle, so it’s not as crude of a feel-up as you’re probably picturing, Dad.] I mean, I’m very aware that at some point I’ll stop seeing them as my temporary prostheses and they will return to being something much more private. Until then, my friends are curious and I have not been able to describe them well enough….until now!

Last week I was at a friend’s house for dinner. As we were preparing dinner, I realized that these silly expanders feel just like a head of lettuce! If you’re gearing up for surgery right now and want to know what they will feel like, go to the grocery store and feel-up some lettuce – stat! I realize that now most of you will think about this when you go to the grocery store. I have a feeling that what I have actually encouraged you to do is start a weird phenomenon that will be confusing to on-lookers and cause you to show up on peopleofwalmart. Regardless, those of you that are mentally preparing for surgery and are trying to understand what they will feel like will benefit from this trip to the grocery store tremendously. So I’ll take one for the team and sound like a weirdo by using my new found analogy. I just hope that it brings at least one of you some comfort by helping you know what they’ll feel like as you prepare for this significant battle of mind and body.
And the rest of you can just giggle in solidarity with me when you walk by lettuce in the grocery store. 🙂

Hanging in there (figuratively speaking)

Nothing really new to report. The last two weeks I received two fills of 50ccs each. I’m now at 450 ccs and can see the finish line. I’m noticing now that one side appears to be a little higher than the other. I realize that’s to be expected. I mean, picture filling two balloons up with toothpaste just a little bit at a time…they aren’t going to fill up in the same way. I know that once I’m done with expansion they’ll be even, but right now every time I look in the mirror it’s all I see. This week my right side has started hurting my arm pit. Basically, the expander is cutting into my side and making my arm pit look weird. Luckily, not many people would ever even notice that, but it makes shaving difficult. It’s caused a little bit of mobility issues in my right arm too. So all this means is…I’m still a little gimpy.

I laid out by the pool last Sunday for 7 or so hours. I now have freakish tan lines and was so worried my doctor was going to lecture me about it. He just laughed, compared my tan to his and told me to not to get so tan that I start looking like I rolled in Doritos. Whew! I hate the ‘no sun’ lecture. I have to think that he was just so glad to see me smiling and feeling better that he decided to pick his battles. I’m not complaining about that at all. He’s backed off on the “make sure you’re not…” conversations with me, and I can’t tell if it’s a sign that he sees that I’m feeling better OR he’s just decided to go easy on me because he knows it’s been tougher than I had expected. I’m just glad restrictions are decreasing and not increasing.

I’m really thankful that the pain has been tolerable lately too. Last Tuesday was the anniversary of my brother’s death and would have been his 30th birthday. I actually had a really nice day. I had a lot of people share great memories of him with me. My mom sent me all kinds of great pictures of us as kids. My pain was tolerable after the fill the day before. I am glad that pain wasn’t as harsh as it has been so that I wasn’t emotionally drained by the time Jake’s day rolled around. Extreme pain coupled with a sad day would have been hard to handle. This process is just as much mental and emotional as it is physical. Thankfully, I  made it through the day pretty well.

Now I’m just coasting through until next week when I get my next fill. I’m on a mini vacation this week from expansion since I’m in Arkansas. I think I have 4-6 more fills left this summer. This next fill on the 9th might be the one that finally pushes my incision out enough so that any creases or folds in the skin are stretched flat. I thinkthe shape is starting to look better even if one is a little higher than the other. I’m already seeing the finish line though and day dreaming about my next surgery. Sooooooo ready. Until then, I’m just hanging in there and waiting to see what the next fill will feel like.

I WORE A TSHIRT!

I finally came out of the fog of that horrific expansion two weeks ago. It took me about 4 days and then I was mobile and pretty much pain-free. The next week I got to do some things I haven’t done in months. Are you ready for this?! I WORE A TSHIRT! I know that sounds silly, but it was a big deal to me. I haven’t had that kind of mobility yet. I ended up wearing tshirts all weekend in fact…just because I could.

I know there’s a big lesson for me to learn regarding that horrible fill but I can only think of these three lessons right now. (I’m still trying to wrap my mind around how I survived that week.) First, I found that my threshold for pain is much greater than I ever knew…but I’m still not sure I would be into the things I learned about in Fifty Shades of Grey. Hell, who am I kidding. I would give it try now that I know my limit. – just kidding, mom ;)- I also learned that expanders tug at my arm fat and I don’t like it. Mostly I learned that expander boobs are still weird no matter who you are or how you try to cover them up.

I know many of you that are considering or preparing for surgery are nervous about the pain of this whole process. It’s scary. I get that. I was scared too. The scary part is that you don’t know how you will tolerate expansion until you experience it. Many people say that they just feel “tight” all through their chest but that it’s tolerable. For those of you gearing up for reconstruction with expanders, I pray this is the case for you.

I have a theory about why my pain has been so excruciating now that I’m past that huge fill. This week I got a 50cc fill. The pain was still present, but not as bad as with 100cc. Through this milder pain, I was able to identify where the pain was coming from. I realized that my arms hurt like they do if you have tennis elbow or carpal tunnel. At some point I went to scratch my shoulder and it turns out, it wasn’t my shoulder that was itchy but an area on my chest. Guess what that means?! Nerve pain. So my theory (based on my years of medical experience on the internet) is that because of the nerve confusion and disruption that my body experienced during the surgery (a la cutting through all the nerves), the pain I’m feeling isn’t totally muscular…it’s also nerve pain. Guess what THAT means?!

Not much I can do about it.

In graduate school I studied uncertainty reduction theory. It basically states that we find ways to reduce uncertainty in order to make sense of the world around us. If we can label something then it’s not as scary…or uncertain. Figuring out the source and/or cause of my pain is a way that I can reduce the uncertainty before each fill. Maybe now I can minimize or eliminate the paralyzing fear I experience prior to the fill. I feel like I reached another milestone in my mental battle with this process. There’s not a whole lot you can do about nerve pain. Now that I know that’s what it is…I’m more convinced to continue the smaller fills. At the very least, I feel like I’ve got a little more control over the beast that is – pain after a fill.

I have also finally been able to identify the length of time it takes for me to get over the impact of a fill. For severe pain it takes me 4 days. For tolerable and milder pain it takes me 2 days. All that said…I’m back behind the steering wheel and can manage my life around these “episodes.” I mean it’s mind over matter at this point, people. I just gotta power-thru.

My doctor told me Monday that I’m at the half-way point! I’m at 350cc and I just need to get to 700. Can I get a hell yeah?! This means I’m on track for my next surgery to be scheduled sometime around the middle of September. I have a goal in sight now. I’m digging in my heels and am determined to make it through the rest of these fills. I’m bound and determined to not get nervous about the next surgery because if I survive expansion the next bit should be more manageable (notice I didn’t say easier). And because in the words of my best friend, Jess, “Mandy should not be afraid of her surgeries…her surgeries should be afraid of her.”

I’ve been taking pictures of myself wearing the same tank top after each fill. In the end, I’ll share an entire series of pictures from start to finish so that you ladies that are gearing up for surgery can see the progress that’s made during expansion. I’ve had a few very heart-felt messages from some of you (both on the blog and privately) that are nervous about expansion because of the pain that you’ve read about in my posts. I don’t ever want to scare you, but I do want to make sure that I share my experience so that you go into this with as much information as you can. More importantly, I want you to know that even through the pain, I’m still progressing and happy with the decision I made. I think it’s at least somewhat helpful for you to see the difference that the 100cc fill made for me. Not only so you can visualize the size difference, but also so that you can see that from first glance, you probably wouldn’t know that I was going through reconstruction.

Here are two photos. (When I post final pictures, they’ll be edited better and not just straight from my phone.) I just really wanted to post something so that you’d have a good idea of what the difference in the two fills looks like…and you can see I’m slowly starting to get some sort of shape to them. I hope that they are taken for what they are – an encouragement to stay focused and know that we do, in fact, survive expansion.

Because we should not fear expansion…expansion should fear us.

Before 100cc fill (yes, that’s Happy being lazy on the couch)

After 100cc fill…ouch

Project New Mandy

This time of the year always makes me a little more introspective. With the upcoming anniversary of my brother’s death/birth (not sure how to write it since he died on his birthday), it’s hard to not think about what life would be like if he were still here – while examining my life’s current course. I’ve found myself thinking about whether or not I’m living my potential, if I’m truly happy, examining what I can do to be a better citizen/friend/daughter/mother. All of those life questions that at some point most of us face. They just seem to be staring me down right now.

This is not my first rodeo of self-discovery or renewal (said in my best Texas accent). I have said for the last 8 years that losing Jake was the biggest identity crisis I’d ever experienced. I knew how to be Jake Redwine’s big sister. I was good at it…even when I was torturing him when we were kids. I understood my role. Over the years when I questioned if I was a good person, or a good step mother, or a good friend, or a good student, or a good whatever – I never questioned my role as Jake’s big sister. And now, I’m facing another opportunity to refine and improve myself in spite of Jake’s absence. I knew that total rejuvenation was in store for me when I made the decision to take control of my future by removing the burden of cancer in a very “physical” way. I also knew that along with any changes my body would have to endure, I had to face the emotional and mental changes as well.  I say all of that just to say – this was all part of a conscious decision to update, renew and challenge “me.” I survived Jake’s death by facing it much like I have the mastectomy. I only hope that the person I am next year grows half as much as I did as a grieving sister.

Last week was rough. When I experience the painful side effects of breast reconstruction, I am very aware of the mind vs. body struggle that encompasses this process. It’s a constant struggle (and sometimes battle) to make sure that I don’t let the pain take over to the point that I slide into a deep depression. It’s so easy to do – no matter if you’re prone to depression or not. On the flip side, I woke up Friday feeling much better and by Saturday evening went out with some friends. It’s the first time in a few weeks that I got to feel “normal.” During the times without pain where I get to blend in with people and do things I would have normally done pre-op, the mind vs. body struggle is still present. I still have to be aware that I have physical limitations. I find myself at times frustrated over not being able to raise my arms, open heavy doors, not having the endurance that I had pre-op (no late nights out on the town), and the fact that my clothes still don’t fit like they used to. Breast reconstruction is in many ways more mental than physical.

Now, with all of that said, the mind vs. body struggle is also much more than those negative struggles I just mentioned. On the bad and painful days, I find myself also daydreaming of what life is going to be like when this is all over. Even in the midst of the most painful times, I’m overcoming the fatigue of pain by staying focused on the finish line. Sometimes the daydream is as simple as thinking about wearing dresses next summer and not having to wear a bra – thus eliminating the whole bra strap issue most of us face. Or the fact that I’m adding in a tummy tuck to my last surgery as a gift to myself. (yay!) During those times when I’m out in public with friends and feeling like I’ve got a little bit of “Mandy” back, I feel a new sense of self-worth and confidence because I’m sitting around people who may not know what I’m going through and aren’t treating me any differently. I’m able to laugh and look them in the eye and appear to be regular “Mandy.” Even though I have no nipples and my boobs are a weird shape and did I mention hard as rocks?! And I have incisions that are still healing and last week I was in bed for 4 days and miserable…  I think you get the point.  

I’m currently reading The Happiness Project. For those that haven’t read it, it’s about a woman’s quest to increase her happiness over a period of a year. In some ways I feel like from the time that I scheduled surgery to the end of my reconstruction next year, I’m going through a similar “project.” My hope has continued to be that I come out of this year a renewed person. I want this year to be more about the emotional and mental process than the physical. So I find myself separating out the two although while both are running parallel to each other, they are also dependent on each other.

I started this journey by referring to it (to myself) as “Project New Boobs.” I mean, that really sums up the physical piece. I’m getting a new rack. Plain and simple. I had a high risk of breast cancer and a suspicious mass. I have now eliminated all of that risk and worry. But I can’t deny that it’s much more than just a new rack. I’m evolving this year. I hope it continues to occur in a very organic, yet deliberate, way. And so, Tata Tatas is the storefront to my happiness project…the project that I’ll now call, “Project New Mandy.”

A to C in under 5 minutes

The last two weeks have been great. I had my step-daughter here with her best friend. We had so much fun. I had hardly any pain but was starting to get a cold. It only lasted a day or two so it didn’t really impact our time together too much. It was so wonderful to have her here. Not only did they help me with a few things that I still can’t do, but they kept me sane. We got to shop and lay out at the pool and laugh together. Best two weeks – ever. I can’t wait for them to come back and see me when I’m not so gimpy.

Unfortunately, this week has sucked. Since in my last fill I did well with 50cc and then another 50cc a few days later, we decided to try 100cc this week. For most people this doesn’t really mean much so let me break it down like this…I went from a full A cup to a C cup in less than 5 minutes. Not only is this stretching the skin and my incisions but it’s also stretching the muscle because the expander is under my pec muscles. OUCH!

I’ve been trying to take as much of a fill as I can each time. There are some women that get 100-125cc each time. (I’m starting to think this is just a lie that the internet told me.) I am struggling with being as flat-chested as I am and I have a wedding and a few other things summer that will require me to be in pictures…I just want my clothes to fit. I’ll never talk my doc into this size of a fill again. He asked me if I wanted 50 or more. I said, “Let’s try 100. I’m ready to go for it.” NEVER.AGAIN.

As the nurse was injecting the saline solution into my expanders, I made her talk to me continuously about her upcoming wedding just to keep me distracted. I knew the minute we finished the first one that I had messed up. I got dressed, walked to my car and sat in my car crying because I didn’t know if I could move my arms enough to drive myself back home. In fact, I probably shouldn’t have driven home. I got home, took some Tylenol and then proceeded to pace around my apartment for 2 hours – sobbing. I can’t even describe the pain. It was the first time in this whole process where I found myself crying and questioning “why me?!” I found myself angry (for a little while) about the fact that I had to do tissue expansion and not some other procedure. (Side note: Tissue expansion was my only option because of the fact that I have had gastric bypass and am much more likely to reject fat and muscle transfers.)

At some point, I decided to get in bed and try to rest. Every time I had to move to adjust the way I was sitting, I would cry. The pain throughout my chest, arms and back was like nothing I’d ever felt before. It’s worse than that first fill. So much worse. I got out of bed at some point to pee and as I moved myself out of bed I screamed in pain. It scared Happy and she hid in my closet for a few hours. I couldn’t get her to come to me. It was so sad.

Day 2 wasn’t much better. My dad called and his pep talk was exactly what I needed to hear. He said, “Mandy, don’t look at this as a set-back. This is part of the process. It will get better. Don’t let the pain get to you. Control your thoughts as much as you can.” He is right. It’s not a set-back. It is just part of the process. I just have to endure it. Pain can mess with your mind and I know that. I can’t let it beat me down. But, this really sucks.

Day 3 is a little better. I was able to wash my hair today without crying. I put dishes in my dishwasher without crying. I’m still so sore. Elena (Thank you!) brought me a heating pad. That’s helped my back a lot. The doctor called in some muscle relaxers for me yesterday and I think they are helping some (Thank you Renee for picking them up for me). I just have to change my expectations and relax. There’s nothing I can do but just be patient and take it easy. I hate that I can’t hide my pain better when people call to check on me. I know they can hear it in my voice. It’s part of this process I guess. I promised myself I’d be authentic and vulnerable when I started this and started blogging about it. I can’t pretend that everything is okay because my friends that are about to go through this need to know. Sugar-coating it doesn’t help anyone. I will get better and this will be over at some point. I know this. I just have to get through this week and never-ever-ever take as large of a fill as I did. It means I’ll get 50 cc every other week for at least 10 more weeks. Ughhhh 10 weeks sounds like an eternity, but I have no choice. It’ll be worth it in the end. On the flip side, I have larger noobs now. Even though they feel like concrete and are shaped funny, they stick out like real boobs. I wish they didn’t hurt so bad. This is one of the times where I’d sell my soul for my mom to be here.

Biscuit-shaped issues

I hate complaining. It makes me feel weak. I think it’s my father’s influence. I’ll blame my intolerance of whining and complaining on him. In fact, if you know my father, you’re probably not surprised by this. On the flip side, I would be doing myself a disservice if I didn’t allow myself the cathartic experience of complaining just for a bit. I’ve tried to point out good and bad experiences in most of my posts because I don’t want to leave a false impression that this is all “rainbows and unicorns” or that it’s all bad. I hope that when I look back on my posts in a year that I’ll see a good mix of a positive ‘make vodka tonics when life hands you lemons’ attitude and the down side to this experience where sometimes it just sucks.

Right now I find myself exceptionally frustrated with the way I look. I’ve chosen to not wear prosthetics because I want to face this head-on and I don’t want to cover it up. When I tried to wear them, I felt more uncomfortable than I did without them. I know this is a temporary phase for my body….it doesn’t make summer dresses any easier to put on. I keep telling myself that in 4 more days I’ll be able to lift my hands over my head and put on a t-shirt or wear tank tops or some of my dresses. The reality is that I will probably cry when I do because they aren’t going to fit like they used to and I don’t have much of a choice but to accept it and power-thru. I know in a few weeks I’ll have enough fills in me to not look so flat chested. It just doesn’t make me feel better right now.

I read a lot of blogs by women like myself and we all acknowledge and talk about the clothes issues we experience. Many of us talk about the body-image issues as well. It’s an isolating experience even when we know there are others out there going through the same thing. I can’t find clothes to wear that make me feel “normal” so I can’t just throw on a bathing suit and head out to the pool like I used to. Now, I stand in the middle of my closet staring at everything – totally paralyzed by the situation. I put on my strapless sports-bra or wrap myself in ace bandages before putting on my one strapless top that fits like spanx. (I had to find one that was tight enough to not fall off, but strapless so that I can step in it and pull it up.) I then try on a few different cover-ups so that I can walk to the pool. My cover-ups don’t fit right because they were all made or purchased by someone with a D cup….not my current biscuit-shaped B-ish cup. When I get to the pool all I can think about is that I have to wear a sports bra under my suit and I feel disproportionate and awkward. It’s very frustrating and then I get frustrated with myself for even letting it get to me.

Sometimes, all I am doing is going to the grocery store. I’ll stand in the middle of my closet staring at all of my clothes. It should be as easy as wearing a t-shirt and shorts. Instead, I try on three or four button-up shirts and then I can’t find the right shorts/pants to match. I’ll end up with tears in my eyes as I put on the same outfit I’ve been wearing most days (black short-sleeved zip-up hoodie and shorts) because it’s the only thing that makes me feel like less of a tool. Yet, I still feel like a tool because it doesn’t feel like “me.” In the process I’ll have a billion hot flashes which cause me to have to consider my clothing decision as well. No matter how many hormones I’m on, I’m having hot flashes again and can’t figure out why! Ughhhh! This means that I sweat thru my clothes before I even leave my closet.

I feel so shallow for feeling this way. I hate it. I don’t want this to be about vanity. I don’t want to feel my femininity challenged just because I don’t have the cleavage that I once I had. But I can’t deny that its a struggle. Feeling polished and “put together” is something that I’ve always prided myself on – especially after surgery or a major event in my life. I don’t want people to look at me and be able to see that I’m ill or grieving or whatever. With reconstruction, I’m being forced to challenge my definition of “polished and put-together.” I keep trying new things and just haven’t figure it out yet. It doesn’t help that I’m still so limited right now. I don’t want this to sound like I’m complaining because I know that it’s temporary and that I’m lucky for many reasons…but I just want to scream and bitch about it for a minute. I’m DREADING going into the office next week because of it. I don’t want people staring me and wondering if I’m okay or noticing that my clothes are baggy. I just keep telling myself – 4 more days and I can raise my arms over my head. I’ll be able to work out and reach things on a top shelf and stand up to wash my hair and try on some of the clothes I’ve stared at for the last few weeks. I don’t know if it’ll get much better, but I’m hopeful. I won’t have implants for 6-9 months. It’s gotta get easier. I know it doesn’t seem like a long time, but when I want to find a cute outfit to wear out to dinner with friends, 6-9 months feels like an eternity. I’ll get another fill on Monday before I go into the office and maybe that will help too. Until then, I’ll put on my regular post-mastectomy outfit and try to not worry about whether or not you can see the ace bandage under my bathing suit. AGHHHHH!!!!!

Got my tires aired up

Okay, so I was a little nervous about this second fill and turns out, I shouldn’t have been. I told my doc about the horrible week I had after my first fill. I made sure to stress the fact that I wanted to die for four days afterwards. I’m not sure he appreciated my overly dramatic explanation for how bad that week was, but I’m pretty sure he got the message. He agreed that it was probably due to the fluid they removed around the expander and the size of the hematoma. The hematoma has improved considerably since the first fill but I was still nervous that it would be painful again. So what did he do?! Only gave me half of a fill. I appreciate the fact that he’s very conservative with his approach to fills, but I left discouraged. Each fill should be around 100-125cc. I got 50. Although, even the 50 made a significant difference.

I don’t know if this is public knowledge, but I’m pretty stubborn. I blame my parents. I mean, can’t everything be blamed on our parents?! A few hours after I left the doctor’s office, it was apparent that I wasn’t going to hurt like the first fill. I was really discouraged to not be on the schedule that I set for myself. I called back and asked if I could come in and get the other 50ccs. He said that I needed to wait a few days. I waited and went in yesterday. I am determined to get this expansion part done as quickly as possible. The sooner I get to the size I want to be, the sooner I can get my implants in…the sooner this will all be over.

After another 50 ccs, I now have about 225cc total. I’m hoping to work up to around 700cc but we’ll see. I’m still not sure that I want to be that large again. At least I’m still on track. I would love to have all of the fills complete by the middle of July, but we’ll see if he lets me be a little more aggressive in the coming weeks. I’m feeling much better about everything though.

This week I decided to start taking a picture after each fill wearing the same shirt so that I document my progress during expansion. When it’s all done, I’ll post the series of pictures. It’s weird seeing myself flat-chested, but I’ve already gotten used to it. I think I’m going to take advantage of it for a little while and do things that I have never really been able to do like jump rope and run.

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