Genes, Boobies and Other Accessories

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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.

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Expansion

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A weekend with the kiddo

My back hurts horribly and I can’t sleep. So I’ve decided to blog…and blog about something totally off topic but very related to what’s going on in my life right now. I hope you’ll excuse the long nature of this one…but its 4:30am and what else am I going to do besides ramble?!

Many parents out there know that at some point we will be “paid back” for every horrible thing we did as children/teenagers through the behavior of our own children. My father blames the gray hairs on the sides of his temples on me. I’m deserving of this honor. I know this. I wasn’t what you might call “the perfect child.” I realize that none of us really were, but in some ways I definitely set the standard. I, for whatever reason, have had to pave my own way through life. I was what you might call…ummmm strong willed?! (I guess if you’ve been reading my blog, you probably aren’t surprised by this statement.) My father would say, “Mandy, you don’t have to have cancer to know that it’s bad. Why do you insist on being so self-destructive? You didn’t have to do that to know that it had consequences.” I really had no answer for him. I see now that my acts of rebellion were simply just acts of rebellion that would cause me to hit bottom and then refine…hit bottom and then refine…hit bottom and then refine. It was a never-ending cycle from the ages of 11-25. A cycle that would slowly decrease in intensity over the years and one that I knew was occurring, but didn’t know how to stop until I was about 25.

At 15 I decided I was done with high school and for all intents and purposes…dropped out. I ended up at an alternative school where I finished my junior and senior year in one year and then headed off to college. From college at 16, I completed my masters by 22. Noteworthy accomplishments for this troubled teen that tended to live a personal life like a bad “after-school tv special.”

I look back on my days of being what I  call my days as a “troubled teen” and wonder how this cycle could exist in my life. I was smart, some-what talented, made good grades, had really good manners and had parents that were well-respected in the community. On the other-hand, I was rebellious, lacked respect for authority (as my father, the Colonel, so often reminded me), had no problems looking at my parents and saying one thing…and doing another, and ultimately had no regard for consequences. It’s amazing how my parents survived my jr-high-ish years. I’m not sure how I survived them.

I say all of that to say, I still keep wondering when I’ll get my “pay-back” with Johnna.

I met my step-daughter, Johnna, when she was three years old. From the moment I met her I knew my life would never be the same. I took my role in her life very seriously. I didn’t want to be just another woman in her life that would come in and then leave. I knew at 22 that this beautiful child was my chance at being a parent and I wanted to be good at being a step-parent. I’ve never really seen myself as being good at anything. I knew I wanted my role as step-mom to be something that I could look at as the one thing I got right. Turns out?! I have been pretty good at it.

When her father and I divorced, her mother and I continued to communicate and she continued to allow me to be in Johnna’s life. I made it clear (to my beautiful and emotionally intuitive 7-year-old) that my commitment to her father was over, but my commitment to her was still very much intact. So over the course of the next 7 years, I have been privileged to have the opportunity to continue to reinforce my commitment to her by being an active participant in her life. Another surprising thing?! Her mother has become a close friend and much like a sister to me. We’re not a traditional family, but we’re a family none-the-less. I will go to my grave knowing that one thing that I’m most proud of is being a good step-parent. It’s a hard role for so many people because you have all of the responsibility and no authority. For whatever reason, Johnna and I broke the mold and redefined what this type of relationship can actually be. And thankfully, her mother has encouraged this relationship in so many ways, even when we sometimes have a hard time explaining it to people. “How do you guys know each other?” “Ummm well, we’re good family friends?” We’ve chosen this answer for people that aren’t close to us because it’s not like I “used to be” Johnna’s step-mom. In our eyes, I’m still her step-mom. I’m just not married to her father…hence the need to avoid the topic with people we don’t know well. It just causes too many weird and confused looks. People aren’t used to seeing a step-mom at dance recitals by herself…and none of us like explaining where the ex is.  LOL

So where am I going with all of this rambling?

This past weekend I flew into Arkansas to spend a “girl’s weekend” with Johnna. She’s had a lot of change in the last few months. It’s hard for anyone, but especially hard when you’re 14 and your parent that was once an hour away is now 13 hours away. You can imagine how hard this move has been on me…it’s been equally difficult for Johnna. What did we do before texting and Skype?! (NOTE: I don’t know how my Aunts made it through the years we were overseas in the mid-80’s.) Luckily, I had been able to see her at least once a month since I moved to Ohio, but since the surgery, I haven’t been able to travel to see her since July. Thankfully, Johnna is secure in the fact that I am still just as committed to being an active participant in her life…as seen by my last-minute decision to make a trip to Arkansas to get time alone with her and take her away for a weekend. Sometimes we just need to get away with someone who loves us so we can recharge and refocus. I think this weekend helped her in this way and it did wonders for me as well.

With everything that I’ve experienced in the last few months and the issues I continue to have, I was able to have a wonderful weekend. I had little pain and was able to accomplish everything we wanted to do. I am so glad my back didn’t start hurting like this until I got home. I just needed a break from life and time with the kiddo.

So as I said before, I keep waiting on my “pay-back.” Well it appears that it still is not coming in the form of her bad behavior, smart mouth, or rebellious attitude. It’s coming in the form of sounding like my parents when I say things like: “No matter how lonely you feel, you are worthy of happiness and love and joy.” “You are my most precious gift.” “You will see that this period of unhappiness in your life is temporary and will get better.” “Go out and make some new friends. Making friends is fun. Expand your circle so that you can broaden your perspective on life and the world around you.” “When you’re feeling lonely, go do something unexpected to help someone else. Take the focus off of you and put the focus on helping someone else.” I can hear my mother and father’s voices when I say these self-assuring, esteem-building statements to her. And I cringe when I realize that yes, I am in-fact turning into my parents. Most notably, I hear my mother as I fight to pull my teen out of her teenage angst. Then the rebellious teen inside of me screams out “NOOOOOOOO – don’t do it. You promised that you didn’t believe that crap. You swore to never say these stupid things. You promised you’d continue to hate everything positive and loving in the world!” And then I smile, because although I love that rebellious teen, I’m not her anymore. I’ve realized that I learned how to show my child I love her through these loving and esteem-building statements. And as my mother watches me go through this current battle of physical change that has been excruciatingly painful both in body and mind…and I watch Johnna go through being a teen and coping with a hell of a lot of change in her own life (outside of the normal teen stuff)…I get the honor of stepping out of my own pain and being the step-mother that I promised her I’d be and pay-forward the love and commitment my parents showed me. I’ll take this form of pay-back ANY DAY.

Category:

Expansion

700 Club

This week I joined the 700 club. Well, not THE 700 club. I joined the 700cc club. I walked into the office bragging on facebook about how it was my last fill. Today’s my last fill. Hey, did you know today’s my last fill? Guess what? Today’s my last fill. See you bitches in two months when I have my surgery ‘cuz today’s my last fill. All of my family knew. Friends knew. Pretty much anyone I’ve talked to in the last two weeks. I am pretty sure all of you knew that as well. I even sang it in the car on the way to the office…Toooodaaaaay is mmmyyyyy lassssttttt fill-illllll.

Of course, not that you’ll be surprised but – what happened?! I sat down on the exam table, unzipped my bra, got ready for my doc to inspect my expanders before “approving” a fill…and he approved it and said things are looking great. He then sat down next to me and talked me into two more fills. That’s what I get for celebrating before the “play in question” is called. No touchdown. 5 yard penalty.

The good thing is I have a surgery date (Dec. 7)! And two more fills won’t impact this date. Thank God! I’m not too happy about having two more fills, but I have the room for them and I have the time. Everyone says they regret not going bigger when they think they want to go smaller. We’ll see how 800cc of fills does. This means I’ll have a 700 cc implant. To most people that would be HUGE…but to someone with no breast tissue, it’s just huge. (Probably a full D)

In the middle of all of this, I’ve finally gotten my meds (for the most-part) worked out. Although I’m slowly increasing to the therapeutic dose of Lyrica, I have times during the day where it feels like I’ve been slipped a roofie (roophie? roophy? How do you spell that?). From about 1-3:30 I literally feel like I have to power-through general anesthesia and try to stay awake – it’s that strong of a “sleepy” feeling. Hopefully that will wear off soon because I have notes from meetings (phone meetings) that aren’t even legible. I think I know what I meant to write down. I guess we’ll know when I begin writing the training documents for whatever it was we were meeting about. At this point, I’m really just trying to keep some sort of normalcy right now by going to work and being excited about my job. It’s hard though when you’re on strong meds and just really don’t care about anything other than getting these damn expanders out. Speaking of…I wonder if the doc will let me keep them after he takes them out so that I can take them to the shooting range after I’m all healed and use them for target practice?? 🙂 It’s the least he can do. I’ve had a harder time with expansion than anyone would have ever guessed. I am due some sort of therapeutic release like shooting at my expanders with an Uzi. I’m not asking for much here doc. Just some retribution.

It helps to have people around me that understand the frustration that comes from having expanders. I had lunch with my friend a few weeks ago that had surgery in January and got her implants in May. It’s fun sitting in a restaurant and saying things like: “I just don’t think I want nipples. I just want tattoos.” “Ooh girl I hear ya. Who wants to wear a bra again after all of this?” “For real. I think that tattoo is enough and it’s 3D. It’ll look fine. It’s not like we can feel them anyways.” (loud laughter) “And girl you know they are just gonna outlive us. We might as well enjoy tshirts without bras.” “Guuurrrl you’re gonna feel so much better once those bricks get removed from your chest.” That’s pretty much the conversation we had. I sure love every moment I get to sit and talk to someone that’s been through this or is going through this. We all have such different experiences…but so many similarities. Of course, everyone feels guilty telling me their “easy as pie” story since mine has been so difficult. I try to let everyone know that there’s no need to feel bad or feel guilty. We all knew that my issues were possibilities for anyone to experience. I’m just the fortunate one that needs more lessons in life than they do. lol I’m not bitter or anything at all so I hate seeing my comrades feel bad for having it better than I’ve had it. I’m seeing the finish line, so hopefully they can all find solace in knowing that I’m almost done too. And either way, we get to laugh about side hugs, heads of lettuce and nipples. Can’t beat that kind of camaraderie for anything in this world right now.

(Speaking of…here’s a pic of me in a shirt given to me by my lunch friend. I love it.)

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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!

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Expansion

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Tying a knot and hanging on

The last few weeks have been weird and frustrating and painful. I keep thinking that there’s a bigger lesson in this for me but there are times when I just want to have a bad attitude and not look for any lesson or silver-lining. Unfortunately for me, a bad attitude never lasts long and ends up being more comical than anything. I just can’t stay fussy. I try. In fact, in the last two weeks no one would blame me if I was irritable. For whatever reason, I try to be fussy and it just doesn’t stick. So the alternative has been to laugh and cry. And I’ve done a lot of both.

After the PT appointment where I had scar tissue rip and I saw my life flash before my eyes, I have stayed in horrible pain. I made it through that first weekend by keeping ice on my chest, taking meds and taking it easy. I spent that weekend in Toronto and still got to do everything I wanted to do. It just took me longer to get places and I cabbed-it more than I normally would. By the end of the weekend I was in bad shape and decided to go see my doctor ASAP.

I saw my plastics guy first. He said that my pain was nerve pain and it was out of his scope of skills. He’s referred me to the pain clinic. I just happened to have an appointment with my breast surgeon that same day, and he sent me to an acupuncturist. He also recommended lidoderm patches. In the last two weeks I’ve been to my plastics doctor, breast surgeon, an acupuncturist (2 appointments so far), a naturopath/kinesiologist/chiropractor/witch-doctor-type of guy, physical therapy (still), and my family doctor. The pain clinic is just now reviewing my file and I hope to get in with them next week. I’ve used natural NSAID creams, ice, heat, pain meds, muscle relaxers, Tylenol, blue goo, tens units and lidoderm patches. I’ve cussed a lot. I’ve tried controlled breathing techniques. I’ve prayed. I’ve read about hypnotherapy and the power the mind has to redirect blood flow in areas of our body….yes, I’m that desperate. And I’m still miserable. I’ve been on the phone constantly with my parents. Usually crying and frustrated because every doctor or practitioner says, “I don’t really know how to treat you. I think we might need to …” And if I get any relief at all – its temporary.

I’m two fills away from having surgery. TWO FILLS. I can’t get a fill until we understand what’s going on with the pain in my left expander and get my back/shoulder to stop hurting. Yesterday my family doctor changed my muscle relaxer (to one that won’t make me so sleepy) and started me on steroids. I tried to resist more meds, but I’m desperate. If we can just get me stable so that I can have the fills and get into surgery then everything will be better and this will all be over. Right now, surgery would fix a lot of this.  My doc says that my expanders are actually expanding out and in. Which means my left expander is sitting on my rib cage, with nothing protecting the nerves around my ribs. Hence, the nerve pain. If I had an implant there, it wouldn’t be putting so much pressure on those nerves.

I’m really tired of this and I’m really upset that all my posts lately have been around how uncomfortable I am. In fact, I hate that part most of all. I don’t like feeling like I’m complaining or throwing a pity party. I really try not to do that, but I don’t want to write something and pretend like everything is unicorns and rainbows when it’s not. I’m obviously an extreme case of someone that’s not handling the end of expansion very well but if you saw how tight my expanders are right now…you wouldn’t be surprised and you’d understand that I’m in the minority. Most of the practitioners that I’ve seen in the last few weeks all say, “I’ve never seen anyone this tight. This is going to be a learning opportunity for me.” Thanks. Geez. This is one time that I don’t want to be the guinea pig. I just want someone to say, “Let’s do this. It will fix you and let’s just get you comfortable so you can get those fills done.” At the same time…I’m still not sure where two more fills are going to go, but the bottom part of my expander is where I need it to be.

Thankfully, the last two days have been more manageable. In fact, I found a massage therapist that has treated mastectomy patients and I’m going to see her today. Maybe she can help me with the knots in my back and shoulder. I’d really like to start this weekend out with little-to-no pain. My father keeps telling me just to “hang on,” “stay focused,” “don’t let the pain get to you, Mandy. You’ve gotta power through,” or “hang on to your lifeline and when it gets tough, just tie a knot and hold on tighter.” I’m doing that…but it’s been difficult. I’m thankful to have a little bit of a break right now from it all as I sit at my desk with ice tucked into my shirt (shhhhhh I’m hiding out in my cube so no one sees that I have ice packs on my shoulder and left expander). I’m sure it’d be difficult to explain if someone walked in right now and asked me what I’m covering up with my scarf. I’m kind of comically hostile though so I might have fun explaining to someone, “Yes, I am indeed, icing my boob and if it makes you uncomfortable then email or call me. I have documents to finish and a video storyboard to review. You can just suck on it ‘cuz I’m tying a knot, hanging on and my rope is long enough to wrap around a few more necks.” Of course, all said in my best southern accent with my biggest/brightest smile.

 

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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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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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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.

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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.

Category:

Expansion

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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