Genes, Boobies and Other Accessories

Archive for August, 2012

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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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.

Keep on keepin’ on

I realize that I left many of you very shocked and angry and confused at the beginning of last week. There was really no way to “soften” that message any more that I did. You can imagine the state I was in…and the fact that I could share it with you that soon was pretty amazing by itself. It’s been an exceptionally hard few days for me. I’m still not certain about a lot of things but I am feeling better every day.

The support and love and kindness so many people have shown me has been overwhelming. Thank you. This has been a hard process to begin with, but the curve ball I was thrown last week was just almost too much to handle. I can’t tell you how much I’ve appreciated every text, email, phone call, facebook message and message through the blog. I also appreciate those of you that reached out to my mom and dad as they needed just as much love and support as I did this week.

I have no new answers. As you can imagine, I have a lot of research to do and a lot of questions to answer. I’m not able to share a lot of the details at this time, but will definitely share them if I’m able to in the future. Right now, here’s what I do know: 1) NONE of this changes the fact that I needed the hysterectomy. This isn’t even in question at all. I had tumors and they were very large. No reason to ever question this decision. 2) I still might have been considered high risk based on my family history, medical history and the lump we were monitoring. I’m not certain of this, but it is still a possibility according to my research and discussions with professionals thus far. 3) I have now lowered my risk regardless of what it was prior to surgery. I can’t go back. I still have to finish reconstruction and make sure that I’m recovering and healing as well as I can…which means I need to lower my stress.

So I’m going to focus on the rest of reconstruction for now. I’ve got 3 more fills and surgery in October. None of this recent news changes the fact that I’ve still got these stupid tissue expanders in and I’m still in the same physical condition that I was before this news. I’ll deal with all of the details of my test results after I’ve gotten through this next surgery. I’ll keep you posted with information once I know what I can and can’t share publicly. That means that this week I will start physical therapy and next week I’ll go for another fill and blog again just as I have been doing. For now, I’m just gonna keep on keepin’ on and count down the days ’til I get these crazy expanders out.

Very Difficult Post But Please Read

I started writing a post yesterday that was full of funny things regarding my birthday (today) and my latest fill. It included celebrities with whom I share a birthday and funny thoughts around my current situation. I even mentioned my upcoming physical therapy and a shout out to my friend and fellow blogger, Sarah. All of this came to a halt yesterday at 521 pm.

When I got home yesterday I checked my mail and opened a letter from the genetics center that did my original testing many years ago. The letter asked that I contact them to update my contact information. Apparently they didn’t have my current Ohio information. I called and gave my new address and phone number. The lady said there was an update to my file and asked if I had time to speak to the doctor. Of course I was excited to talk to her because of the new found sense of pride I’ve discovered surrounding my mastectomies. The news the doctor had to share with me was something I could have never expected. In fact, I’d say it’s the worst news I’ve ever heard.

This summer they completed additional research on my gene mutation and found that my test results are actually benign.

Let that soak in.

Basically, for 6 yrs I’ve been told I was in fact BRCA2 positive. I had the documentation and everything. I made the decision this year to end my worry and eliminate my risk by having a bilateral mastectomy…and I didn’t have to.

I now feel like my entire foundation has been shaken to pieces. I’m exceptionally confused, sad, angry… Honestly, I don’t know what else to say right now. I want to continue this blog. I am still going thru reconstruction- there’s no backing out now. I am trying to find some peace and understanding but right now I just can’t. I’m angry. So very angry.

I have no real insight or ‘lesson learned’ to share. I have no positive spin. I have no answers. I don’t know what else to write right now but felt that it was very important for me to share my recent news. I never ever want to appear to be a fraud but I can’t keep writing under the premise of being BRCA2 positive.

My goal for this blog was to be vulnerable and transparent. I still have so much to endure before the end of my reconstruction but I need some time to process this new turn of events, and I need time to reconcile what has happened. I’ve gone from feeling empowered and hero-like, to defeated, deceived, and helpless.

Please forgive me for not being ready to discuss this in detail. I’m going to take some time to process it. I don’t know when I will continue my weekly blog posts, but I promise I will resume them at some point. Please forgive me for not being very responsive if you reach out to me right now. I promise that I will survive this latest news and be back to sharing my experiences and insight as soon as I’m ready. I’m searching for clarity and understanding. I’m just too broken right now to say much else. What was seemingly incomprehensible to begin with has now gotten worse. As most of you now know, I’m a fighter and am resilient. I’ll bounce back with a renewed sense of self and resolve…but I need some time.

For those of you going through reconstruction right now…solidarity.

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