Genes, Boobies and Other Accessories

Posts tagged ‘BRCA2’

Numero Tres…and counting

Starting my count down to surgery numero tres. I hope this is the last one….for a long while. While I wait, I’m house-hunting, car shopping for the kiddo and working a little too much. I am thankful that at some point I won’t have to plan work projects and house projects around surgery. Until then, I’m going to do what I can to get things in order so that I can be out of commission again for two weeks…with only one drain this time. Woot Woot!

When I went to the doctor this week I showed him my left side and we commenced with what seems like such a normal conversation to me, but probably sounds crazy to anyone else. Here’s my recap:

Me: Do I have to wait 2 more months or can you just fix it now? See how much it’s fallen? (as I remove my gown)

Doc: What is it you always say? Holy crap balls?! Yeah. It’s fallen. We need to fix it. 

Me: Ya think?! Can we do it now?

Doc: I’ll submit it to your insurance and we’ll get you in within the next 4 weeks. Is it bigger than the other one too? (as he pushes it up and puts his glasses on)

Me: I think it’s just the way it’s laying. Sometimes I just have to move it around to get it out of my armpit. 

Doc: That’s weird.

Me: Whaaat? You’re weird. Please fix it. 

Doc: I will do my best. (insert overly confident and egotistical laugh here) You’ll be happy after this last surgery – I promise. You seem to be doing well since you’ve been such a smart ass. You’ll survive a few more weeks and we’ll get you taken care of…

I know I’ve said this before – if you’d told me a few years ago that I’d be talking about boobs this way, I’d have called you a liar and punched you in the face. As it strange as it seems, it just felt so normal to have him joke with me about it like I’d just gotten a bad hair cut. He might as well have said, “wear a hat until the mullet grows out and then we’ll give you the cut you want. It’s a little bright too, so don’t stand under florescent lights.” And how weird is that considering we’re talking about boobs?! Something that most people would never be so casual about unless they are hoe-bags or porn stars. If I’ve said it once, I’ve said it a billion times….there’s nothing sexual or sexy about breast reconstruction. Case and point? See conversation above.

Category:

Post Op

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Lopsided Reflections

Okay. I know it’s been a while. A long while. The fact is, I’ve had writer’s block and have needed a break. You know how it is. Surgery, the holidays, work has been crazy busy, and I’ve just been in a holding pattern. BUT this week marks one year since my bilateral mastectomy! And so as you can imagine, I’ve been reflecting on this journey a lot this week.

Last night I went to a local meeting for FORCE. I decided to go because I needed to be around other women like me. I wasn’t sure what to expect and found myself apprehensive about discussing my experience this last year. I caught myself at one point having to search for the right words to use when describing my experience. I even said, “I really need to work on my answer to this question.”

Why?? Because for the first time I was sitting face-to-face with other women who had the BRCA gene. So when they ask me if I’m BRCA1 or BRCA2…I didn’t know what to say.

I’ve been so cautious this entire year when sharing all of the raw details of my experience. I haven’t wanted to scare anyone or under/over dramatize my experience. And let’s face it —it’s been a hell of a ride. I don’t want to talk someone into having surgery or out of having surgery just because I’ve had complications. You can imagine how hard it is for me to look at these ladies in the eyes and say, “Well, I started out BRCA2. I was given the results in 2007 and then in Sept or so of last year, I found out that the gene mutation was negative.”

Most people don’t even know that this is a possibility. And yes – I’ve come to terms with the fact that in a few years they might come back to me and say that it’s actually a new mutation that they’ve discovered called BRCA3. And yes – I’ve reconciled as much as I can knowing that my family and medical history still points to a hereditary link to ovarian and breast cancer. But that’s a lot of “sharing” just to quickly try and make them feel better about their decisions for their lives. I’ll find a better way to answer it so that I’m honest, accurate and not alarm them unnecessarily. I just haven’t figured that part out yet.

After they got through the shock of hearing my story, it was sooooooo nice to hear them talk about their experiences. We all had such different, yet similar experiences. Turns out?! I’m not the only one with complications! I left there last night feeling better about the way I explained my experience. I also left there with a renewed sense of belonging. It’s so cool to be a part of this unique community of strong, courageous, proactive, resourceful and “real” women.  (hehehehe Even if our parts aren’t “real.”) I love that this experience has continued to reinforce to me the strong conviction that we must take ownership of our lives and health.

Now, I’m waiting for my next surgery. The journey hasn’t ended for me yet. But I’ll be interested to see how this next phase continues to help mold and shape my life. Well, and literally I hope to be molded and shaped…my left side has fallen and needs to be fixed. I’ll go see my doc Monday to see if I can get on the surgery schedule soon. “Silly looking leftie” has nothing holding it up because of the amount of muscle I lost in the last surgery. I’m lopsided to say the least.

I’m going to start back writing more frequently like I had been. So more to come! In the meantime, please keep my family in your prayers/thoughts. As I’m bringing my battle with cancer to a close, my cousin will be having surgery on Friday to determine the extent of a cancer he has developed. I believe that we’ll both share this week as a time each year where our lives were changed for the better. I have no doubt that he’ll receive blessings from his experience like I have. We’ll look at April 18 and 19 as the dates where we both punched cancer in the face and became more polished and loving because of it….and we’ll raise our glasses of kale/blueberry/flax seed smoothies in celebration together!

While I’m closing out one chapter and beginning a new one, I am still optimistic about my outcomes, happy with my decision, and thankful for a new lease on life. It’s been a wild year and I thank every one of you for your support and encouragement. April 18 marks one year of the hardest and most rewarding journey I’ve ever been on. In celebration, I’ve started a fundraising page on FORCE’s website to try and “give back” for all that they’ve done for me and continue to do. Please feel free to share it and give any amount that you feel led too. This year, my fundraising is for my grandmother, my aunts, my mother, my cousins, their future children, and my Peanut. Most importantly it’s for the 34 year old that’s reading my blog in silence, contemplating her options, and finding solace and peace through my experience and that of other’s that she reads about through FORCE.

-M

P.S.

Look, Mom! I have cleavage!

Look, Mom! I have cleavage!

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Post Op

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Maternity pants and showers

Today I finally got to take a real shower! It’s amazing what a real shower will do for a girl. She might actually run errands, finish her Hanukkah shopping and blog for a bit. I know it’s been a few weeks but I’m 3 weeks post op and doing really well. The last few weeks have been such a blur that it’s been hard to sit down and focus enough to catch people up on how I’m doing. So let me start with the first week before surgery – sometime around Nov 7th-ish…

The last time I wrote I had just found out that I was going into surgery faster than anticipated and was uber freaked out about preparing. Well, two days after that post, I ended up in my doctor’s office again. Wednesday night I noticed that the spot that we were concerned about had started to bubble out more. I went into the office first thing that next morning to show him. He ended up looking at it and told me that he had to open it up right then. Yes. I said it. OPEN it up. He prepped a room, turned on some cheesy 80s soft rock and had the nurse give me local in my left breast. To say I was freaked out is an understatement. I laid on the surgery bed convincing myself that a little local anesthetic will be perfect and I won’t feel a thing. I really wanted it to be all rainbows and unicorns but it wasn’t. He opened up the first part and then started squeezing my breast so hard I wanted to die. In fact, I started cussing like a sailor. I even looked at him while I was crying and apologized by saying, “Dr Heck, I’m so sorry but I’m going to develop Tourette’s for a minute and not sound very lady-like.” He laughed, continued packing my boob with gauze and began to sing the Richard Marx song that was playing on the radio. Pretty humorous scene even if it was horrific. He flushed the area with peroxide and then packed it with gauze. I don’t EVER want to feel that again.

That was Thursday before surgery. I went in Friday morning for them to pack it again…Saturday and Sunday we had to pull out a little bit of gauze each day and trim it…Monday got it packed again…and Tuesday again. Longest few days of my life. I was MISERABLE. My parents came into town a few days before surgery and that was a fun distraction. Dad went with me to all of my appointments and had the “I’m talking to you as a father not as a medical practitioner” talk with my doctor. My doctor didn’t seem as intimidated as he should have been, but it was effective none-the-less. I’m not sure most girls would feel as comfortable with their dad sitting in the room questioning their doctor while a nurse packs their boob with gauze and the doctor explains placement of the tummy drains as it pertains to the way women prefer to shave their privates…but nothing about this process has been normal for me and THANK GOD my father can ask the right questions and keep my doctors honest.

Wednesday morning was business as usual for a surgery day. I packed a small bag. Dreamed of coffee and cussed my doctor for an 11:00 surgery which would delay said coffee. Surgery went well and I was out in recovery pretty quickly. He cut out all of the infection and a lot of my scar tissue, put in my implants and then closed me up. They then cleaned the room, changed clothes and did my tummy tuck!!!!! YAY!!!!! The only real silver lining in this is that I got a new belly!!! He did the surgeries as if they were two separate surgeries so that he could prevent cross-contamination and try to keep my infection under control. Everything went well and I was home by 5:30-ish. Can you believe that a tummy tuck and breast reconstruction can be done out-patient?! Way cool.

Sucky part about this surgery? 4 drains. Ugh. One in my left boob, one in my right boob, one in left hip and one in right hip. I also had staples in my left boob so that if the infection returned, it was easier to open me up. Seriously hated those things. I got the first drain out from my right boob a few days after surgery. My right hip and left boob were taken out a week later. My left hip was a little more fussy so I went in Monday to have it removed and the rest of my staples. Actually, that’s a lie. I went in expecting to have the drain removed and he didn’t feel like it was ready. Instead of just telling me to come back Friday, he cut the suture and told me to either come in Friday to have him pull it or I could pull it myself if it didn’t start falling out on its own. Are you kidding me?! You think I’m gonna wait until Friday to pull this sucker out??? NO WAY. I pulled it Tuesday night. You don’t ask someone who’s dieting to walk around with chocolate in their purse. It was way too tempting. And 3 weeks without a real shower? Hell no. That drain came out as soon as I psyched myself up to have Maren pull it out. There’s nothing like having to take whore baths for 3 weeks with 4 drains hanging around you, staples in one boob and an incision from hip to hip. I was ready for that drain to be gone.

Honestly, I’m actually feeling better than I have in months. My dad even said that in the 42 years he’s been doing anesthesia he’s only seen someone wake up from surgery looking and feeling better than they did prior to surgery one other time. So you can imagine how much better I feel and look. I’m REALLY happy with my tummy tuck. I’m still swollen and getting used to seeing myself without an apron. (Apron = The skin on my belly used to hang down far enough to rest on my thighs. That’s what losing 120ish pounds will do to you.) I think I’m going to love it when it heals and the swelling goes down. They say it’ll take a few months for that to happen though. I’m wearing maternity pants until then and have never loved yoga pants so much in my life.

My boobs on the other hand…well, the jury is still out on them. It takes a number of months for the implants to drop. I woke up from surgery and all of my nerve pain was gone so I’m no longer in any real pain. They are sooooo soft. I love that part. I just don’t know if they are shaped right. We’ll see how the next few months shape up – literally. I’m more concerned with my left side still being infected so I’m not going to worry about any revisions I  might need. My doctor is monitoring my boob and he says it’s looking good. I’m still kind of nervous that it’s not. I really don’t want to start over. I will definitely have to have at least one revision before I can even consider nipples. At this point though I’m feeling so much better that it’s easier now to be patient with the process. Chronic pain is a bitch and breast expanders are the biggest bitches of all. I’m just glad all of that part is behind me. Right now I’m just going to enjoy time without pain, let my body heal, enjoy Hanukkah and stay thankful for maternity pants and showers.

Category:

Expansion

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PMPS – WTH?!

It’s amazing how quickly life can change. Bad to good. Good to bad. Just when you think things can’t change (and change quickly), they do. Over the last 4 or so weeks, I’ve lived, what I have at times called, a nightmare. To be honest, it’s been the most challenging time of my life. I think I’ve said that a few times since I started that blog. Seems like I’ve struggled a lot more than expected and each time is tougher than the last. I’ve had times where I thought there was no way I could handle any more pain than I was experiencing…and then it’d get worse. I wish I was being overly dramatic about it. I wish I was exaggerating and taking some literary license in describing the experience, but I’m not.

Over the last few weeks I’ve had days where I don’t know how I got myself dressed. Every move that I took hurt so bad it took my breath away. Showering was hard. Driving was horrific. You don’t realize how much you use your arms and pec muscles until you’re unable to move them. There were even days when I was completely unable to use my left arm and hand. I cried almost daily. I can’t count the amount of times I called my parents crying, frustrated and at the brink of losing my mind.

Just to catch you up on what’s transpired, that damn pain clinic took 4 weeks to call me to schedule an appointment. My appointment is next Monday. I can’t believe it took this long. During my wait, I continued to try everything just to get comfortable and try to exist. Last week, I finally started getting some relief! My massage therapist has basically saved my life. I have full range of motion in my left arm. My back no longer hurts as bad as it did. My pec muscle moves. It’s a miracle. Literally. I owe her my first born (well, if that was possible I’d be a billionaire, but you get the point). My family doctor started me on Lyrica and Cymbalta for the neuropathy. It’s starting to kick in and the nerve pain has gotten a billion times better. So much better that I scheduled a fill for next Monday!!! I’m going to get back on track! Two fills and then surgery! I can’t even begin to describe how much better I feel. And OMG I can lay flat on my back now! I haven’t done that since before surgery.

Because I’ve spent an unusual amount of time in bed surfing the internet, I have learned that because of the post op hematoma that I had, I was more prone to a condition that’s called Post Mastectomy Pain Syndrome (PMPS). For those of you thinking about surgery or going through it now, please please please learn from this. If you have a hematoma after surgery, keep an eye on your pain early on in the process. Begin seeing a massage therapist regularly (even if you’re not in pain) EARLY in your recovery. Let them help you before it begins to happen. If you begin to notice that your pec muscle is not relaxing. You have shooting pain down your arm and through your back. Don’t wait. Get to a trained massage therapist quickly and speak up to your doctor. Recognize the signs so that you don’t get to the point that I was at. I wish I had known that this could happen.  

So now that I’m getting my life back and no longer living in my bed with ice on my chest and heat on my back….I am working on a blog post that I’ve been slowly writing for a few weeks. It’s about one of the most important topics regarding breast reconstruction….bras. Bras. Friend or foe? I’m compiling a list of bras that I’ve worn over the last few months to showcase not only the ones that were comfortable and functional, but also the ones that I battled with – all in the name of fashion. I hope to post it this week. You’ll see it soon!

Thank you to EVERYONE that’s reached out to me for encouragement over the last few weeks. You’ve had the right words for me at all the right times. You’ve kept me encouraged and comforted. I am still battling this, but so thankful to get a break from the bitch that is expander pain. And I will update you after my fill next week and after my visit to the pain clinic.

700 (cc) club here I come!

Category:

Expansion

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EXTREME bonding

Asking for help has always been hard for me to do. Some say it’s because I’m hard-headed, stubborn and independent. I like to think that it’s because I’m driven, focused and self-sufficient. In the last few weeks however, I’ve found myself in a couple of situations where I was forced to ask for help. I get frustrated when I have to ask because it makes me feel weak. I realize how silly I sound. I also realize that if any one of you were in my position, I’d be telling you the same thing people are telling me. “You need to ask for help.” “There’s no need to be super woman today.” “Why won’t you just let me get that for you?” “You didn’t have to carry all of that in the house; I could have helped you if you’d just waited for me to get here.” Blah Blah Blah – You get the picture.

As you may remember my left side has been the one with the most problems from the beginning of this whole process. It’s the one that had a very large hematoma on it that lasted for about 10-12 weeks. It’s also the one that I had the most issues with when I still had my drains. For whatever reason, my left boob hates me and it is determined to make life hard (pun intended). Someone must have told it that I started physical therapy and that this would be a great time to be a jerk again, because it’s been kicking my ass for two weeks now. It’s so bad this week that I’ve cancelled next week’s fill and changed it to the following week. I’ve spent most evenings in bed with ice on my chest. When my ice packs thaw out, I put them in the freezer and then grab some frozen broccoli. (So warning to anyone that opens my freezer. That might look like perfectly normal frozen broccoli, but it’s been thawed and re- frozen and under my shirt a few times.) I’ve basically turned my whole left side into an expander popsicle because I’ve iced it every chance I’ve had.

In Monday’s physical therapy session my therapist asked if I had anyone around that might be willing to help me with my exercises. (The problem isn’t that people aren’t willing to help….the problem is I don’t ask for it.) So for today’s session, I brought Maren with me. Now, Maren knows that this has been a painful few weeks. She also knows that PT has been rough on me. I’m not sure she was prepared for the crying that occurred today. I know I wasn’t prepared for it.

The therapist first taught her how to hold my left arm while I’m laying on my right side, put her hand on my shoulder-blade and gently move the shoulder around. This particular exercise is what helps me get a little bit of relief from the pain in my arm and shoulder. So, this part wasn’t too bad. She got the hang of it pretty quickly and probably felt a sigh of relief thinking that this was going to be easier than she thought. Exercise number 1? Check.

Next, I had to lie on my back while the therapist started on my left side. At first she just held my arm and then lightly applied pressure on my shoulder. (I’m hurting at this point but not anymore than I had been.) She began working around my left expander. Taking slow motions, with her fingers, she started just under my collar-bone and ever-so-lightly pulled the skin down towards the expander until she gently applied pressure to the expander. She does soft and slow moves until she makes her way all around the expander. This is supposed to help move the connective tissue and relax the muscle.

Now, the way that I just described this makes it sound like it’s relaxing and soothing. In fact, while I was typing that I felt myself relax like you do when you get a soothing massage. In reality, it’s the worst pain I’ve ever felt. Why?! Because I’m soooooo tight and my muscle doesn’t want to move. And today, as she began to show Maren what she was doing and explain what was going on with the muscle, I heard a pop and I felt something rip.

(Physical Therapy + Breast Reconstruction = Mandy has developed Tourette Syndrome – ‘cuz sometimes all you can do is cry and yell MF)

Immediately I tell her to stop. I started to cry. I lifted up my shirt to see if something was out-of-place or maybe my incision busted open. It was horribly painful. She stopped and got me some Kleenex. We took a minute to chill and let me cry and gain some composure. When I was finally able to breathe again she explained that it was scar tissue that “broke up.” I’m told that this is good…at the moment it was all I could do to not come off the bed swinging. I’m not sure that telling me this is a good thing actually made me feel better. How can that be a good thing? I heard it pop! Ugh! Yuck! Gross! MF!!!

I got myself under control and the pain subsided a little bit. She asked if I was ready to have Maren try. Whaaaa???!!!  You can imagine the look on Maren’s face at this point. I asked, “Can she try on my right side and not this one?” I’m pretty sure I saw the color return to Maren’s face when she realized she wouldn’t have to touch that left side. I don’t know what Maren was thinking at the time, but I have a feeling she was working hard to focus and calm her nerves. I’m sure that seeing me cry didn’t boost her confidence.

Maren followed her instructions on the right side and got the hang of it pretty quickly. Then my therapist says she wanted her to move to the left side. We both got a little panicked. I can’t imagine the anxiety she must have felt knowing that this was the side that had just sent me into tears. The therapist had a good point though when she explained that she wanted her to feel comfortable working on the left side and it would help to have her [the therapist] there for guidance before she and I try this outside of the clinic. And of course, in usual Maren fashion, she manned-up, put on her game face and grabbed my left arm to get in position for the exercise. Right before she started, the therapist told her to remember how much pressure she used on the right side and decrease it 10 times because that’s all I can tolerate. I saw the color leave Maren’s face again. No pressure there, Maren. Just decrease that by 10 times, you know how to do that, right?! Geez. I felt bad because I was trying to find my “happy place” so that I didn’t start crying again and therefore I couldn’t really say much to reassure Maren that it was going to be okay. So, I let her practice just long enough to feel more confident with the left side, but at some point had to stop her because I was still in too much pain. Exercise Number 2? Check.

My mother called today’s experience “Extreme bonding.” We both agreed the only thing that would top it is if Maren and I had done colonics together. (I’ll take this kind of bonding over that – ANY DAY. I will not go number 2 in a bucket amongst friends. Sorry peeps, but I have my boundaries.) I’m pretty sure I owe Maren my first-born or at least a lifetime of Starbucks or counseling sessions for the PTSD she’ll have when this is all over. (lol just kidding, M – I promise it won’t be that bad.)  It’s not every day that you get to ask someone, “Hey, ummm do you think you would be able to ummm come to my PT appointment and ummmm learn how to mash on my expanders and move my arms while I cry like a baby? I don’t yell and cuss until I get my car, so I won’t completely embarrass you, I promise.” I’m sure she never expected to be asked that question in her life. It’ll definitely go in the books as one of the most personal and awkward things I’ve ever had to ask someone to help me with. But then again, this whole ordeal has been nothing but personal and awkward.

 

…and I’d like to go on record – I actually asked someone for help.

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Expansion

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6-freaking-hundred

This week I’m off schedule a little. My doctor thinks that taking a long weekend for a mini vacation is acceptable these days. I disagree – unless it’s on an “off week” in my fill schedule. It probably worked out better for me in the long-run because the last few days I’ve been really sore. Last week I started physical therapy, went to a work conference in Orlando, worked long-ass days, taught classes, and went to lots of happy hours and dinners. Needless to say, I overdid it a bit.

Let’s start with the Physical Therapy deal from last week. For those of you who are going through this and don’t think you need it – you need it, trust me. My physical therapists specialize in helping breast care patients. And let me tell you, I learned a lot during my evaluation last Monday. In fact, I’m disappointed that I didn’t ask for this sooner. I found out that I needed to be pressing down and making circular motions all around the circumference of my expanders to get the muscles to loosen up to improve my range of motion (now that my incisions are completely healed). I had no idea that I could even do this OR that my expanders could move slightly. (Creepy feeling by-the-way) I also learned that a lot of my nerve issues are because my expanders are so far under my armpit that they are pressing on nerves that I haven’t had to deal with until the last few weeks. AND I have rotator cuff issues which perpetuate the nerve issues I’m having in my arms. Very enlightening.

I’m now doing exercises every morning and every night. Right now all that I’m allowed to do are shoulder squeezes and butterfly wings (to stretch out my shoulders). I was seeing almost immediate improvement until last Thursday when I overdid it at the conference and had to stop the exercises for a few days. Funny how you start feeling better and immediately think you’re Wonder Woman. Apparently my body wanted me to hear the message loud and clear because by the time I got to my hotel room Thursday night, I was in tears. Fortunately I had a very early flight back home and a Friday afternoon PT appointment already scheduled.

This weekend I realized that part of the pain I am having under my arms could be intensified by the bras I’ve been wearing. I’ve been wearing these very simple, spaghetti-strapped sports bras that actually have straps that don’t curve in toward your neck. It’s hard to find ones that look like tank tops, actually. I just happened to find some cotton ones at Target and have loved them because they don’t interfere with anything that I want to wear. The problem I noticed this weekend is that the ones I’ve been wearing are growing too small for me. They aren’t necessarily too tight, they just aren’t wide enough to cover my whole expander-boob. The elastic rides up to my incision under my arm and I find myself having nerve pain and this weird burning sensation around the scar. So I bought new bras this weekend and that has helped a bunch.

Anyhoo, today the pain has been manageable and after my fill, I’m now 600cc. Yep. I said it. 6-freaking-hundred! My doc says I have 2-3 more fills before I’ll be ready for surgery. I can’t even imagine. He walked into the room today and said, “Hey, they are starting to look like breasts. Just 2 or 3 more fills and I think we’ll be ready to take these out.” Uh maybe he sees so many weird boobs that he’s forgotten what natural/normal ones look like?! And why couldn’t he have said something like, “You’re healing really well. I promise they are going to look great when we get the implants in. You won’t be bride of Frankenstein for too much longer.” Although I guess that would make him Frankenstein and I’m sure that’s not exactly the image you want to leave with your plastic surgery patients.  

I don’t know what these things are going to look like in the end, but right now they are so far under my arms and up to my throat that I feel like the Hulk or one of those freakishly large female wrestlers (sans perfect arms, toned abs and testosterone issues). When I watched my boobs expand today, I thought about Dolly Parton. (You can imagine why.) Not only do I love her but I laid on the exam table today wondering how she’s managed all these years being that large. I know that I was large before this, but it was different in some respects because they sagged and I could control how much they were pushed up by the bras that I wore. Today, they just sit at my neck so they feel so much bigger than they probably are. Geez, I’ve always adored Dolly and wanted to be like her …but not in this way. Which reminds me of two of my favorite quotes from her:

I was the first woman to burn my bra,

it took the fire department four days to put it out.  

(AND)

Plastic surgeons are always making mountains out of mole hills. – Dolly Parton

After today’s fill I had the weirdest thing happen. I walked in wearing a pink button-up shirt that I actually ironed this morning (BTW – I don’t iron…if you can’t toss it in the dryer, I don’t want  to buy it). I was actually feeling pretty this morning and liked my outfit. I had my fill, buttoned my shirt back up and knew immediately I was going to have to change before I went into work. I walked in with plenty of room for the “meat balloons” (thank you to my BFF for the new term for my expander-boobs). The shirt fit really well and didn’t pull or gape around the chest at all when I walked in the room. I walked out with a shirt that gaped open and a button that wouldn’t stay buttoned. Sigh…no more cute pink shirt for me.

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Expansion

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School of Hard Knock(er)s

In the school of hard knock(er)s, my lessons seem to always come in the form of surprise pain. Surprise pain is like a sadistic ninja just waiting for me to relax and get a little too cocky with my positive self-talk and mind-over-matter strategies. Today’s surprise pain came when the nurse put the needle in the left port. I instantly got a shooting pain to my left arm down to my elbow. It was so surprising to me, that I immediately started crying. In all of this time, through all of the horrible fills, I’ve never cried in the doctor’s office. Today? Cried like a little girl. I couldn’t stop it and I felt like a goob. I felt bad for my nurse because I think my reaction to the pain startled her a little bit too. The pain basically felt like instant and excruciating tennis elbow (tendonitis). It subsided after a few minutes to more of a dull ache – which is MUCH more tolerable. The right side didn’t hurt like that at all. I would have never thought that my arms would react to expansion the way they have. Seems like so much of my pain is actually in my arms and not in my chest. That sneaky little ninja seems to know exactly where to throw me off course so that I have to face every aspect of this process physically, mentally and emotionally. Challenge accepted you little jerk.

These last two weeks have been really really good for me though. I had a break from expansion last week and got to feel more mobile and “normal” than ever. Seems like the “breaks” are getting better and better. Not only did I get to be part of a friend’s wedding and wear a dress that didn’t make me feel/look like a crazy lady with misshapen boobs…but I took a nap yesterday and laid on my right side! I know that sounds so silly, but I’ve been sleeping propped up and on my back since April 18th. I don’t think I can lay on my side very often, but it’s the little things that keep me going right now.

I still hate that I’m going every other week for fills now. I know that I obviously need to slow things down. (said in my whiniest voice) Extending the amount of time it will take to get me thru expansion is not the only issue that I’m a little pissy about. Two weeks in-between fills gives me time to get used to feeling good. For a few days I get to pretend like this isn’t really happening. Of course, I’m reminded when I move too much or I reach for something too quickly…or when I bump up against something or have to change to a different style of sports bra in order to wear a certain shirt…you get the picture. But during the 10 days leading up to the next fill, I don’t have pain. Because of this, I’m finding myself growing anxious the night before a fill. Each fill just seems to be such a surprise (good and bad), so I don’t really know what to expect until I get them. Sundays are now referred to as the night I have to “put on my big girl panties.”

Today’s fill brought me to 500cc. Only 4 more fills to go. I’m not real sure where another 200cc are going to go though. I just don’t know that I have the room, but he assures me that I will get there.  I already feel huge. The fills are REALLY quick. So literally, I walk in, talk to the doc for about 3 min, and then I’m with the nurse for (maybe) 10 minutes. It’s nice that it doesn’t take up too much time…but I still feel like I live there. In fact, everyone commented on my new hair color as I walked in. Kinda funny when you spend so much time at your plastic surgeon’s office that the staff and nurses recognize that I’ve had 4 different hair cuts and colors since April. They weren’t lying when they told me that I’d be part of their family for a year. Getting to know the girls in the office does help me when I am faced with the ninja of surprise pain though. It helps to talk to them while I mentally kick the ninja’s ass so that I can be prepared to walk out and drive myself home. By the end of this I should be a master sniper of ninjas and have a PhD in mental pain management….street education is just as valuable as my formal education and I intend on graduating with honors for this round of degrees.

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Expansion

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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.

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Expansion

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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

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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.”

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Expansion

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