Genes, Boobies and Other Accessories

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.

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.



Look, Mom! I have cleavage!

Look, Mom! I have cleavage!

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.

Great post! I am feeling thankful for very similar reasons and want to share her blog with you.

Decisions for my Family

So with my next and hopefully last surgery next week as well as Thanksgiving, I got to thinking about what this year and a half has been like.  A bit of a roller coaster to say the least.

  • March 2011 mammogram and breast ultrasound; lump confirmed
  • June 2011 needle guided biopsy
  • June 2011 surgery to remove the lump due to “abnormal” pathology results
  • August 2011 Breast MRI
  • Doctors appointments with specialists
  • early 2012 abdominal CT to ensure I was  DIEP candidate
  • Blood work
  • more doctors appointments
  • July 2, 2012 Bilateral Prophylactic Mastectomy and DIEP flap
  • More blood work
  • more appointments
  • August 24, 2012 Breast reconstruction and revision
  • More blood work
  • more doctor appointments
  • November 7, 2012 Pelvic Ultrasound
  • November 9, 2012 Colonoscopy
  • November 19, 2012 Breast revision Pt 2 **Pending**

In between Birthdays, Holidays, back to school nights, summer break and normal daily activity because the reality is, doctors, scans…

View original post 244 more words

And the saga continues…

I’ve decided that nothing about this process is really going to be easy for me. In fact, I’m hoping that the nightmare that I’ve endured is so that other ladies don’t have to go through the complications. I will just handle them all for you. I hope that’s the way it works, anyways. I wouldn’t wish this on anyone and if for some reason God has put this on me so that others don’t experience it…then I am thankful and hope that I’m learning all that I can from it. It’s definitely been humbling. I can tell there’s a softness happening in my overall outlook on life. I’m thankful for it. I have said that I hoped this would be a life-changing experience for me and that I’d be more tolerant, more loving and more compassionate because of it. I think that’s definitely happening. I just hope I still get the polishing and sense of grace that I hoped for…because I’m struggling with being lady-like right now. I am developing a type of tourrettes that causes me to randomly cuss with a smile on my face just to weather this storm of an experience. At least I’m keeping my sense of humor. Sometimes I think that’s all I have. 🙂

When I wrote last, I was getting ready for another fill. I had two more to go and things were holding steady for me. I had a surgery date of Dec 7 and was starting my 6 week countdown. I had an amazing weekend with the kiddo and was preparing for a week-long conference for work. The week after my last post I had two doctor appointments. One was with my family doc where she just checked on my meds and made sure I was doing well. I showed her a light pink area that had developed on my left expander and she just said to show my other doc. My appt with him was later that afternoon.

I went to my fill and when my doc saw the pink patch he told me to start some antibiotics that day just in case it was an infection. He filled me to 750cc and I went on my way. Nothing out of the norm. Nothing to be alarmed by. In fact, I started the antibiotics and didn’t notice any change in the spot for about 10 days. I even went on to my conference in Baltimore (Yes, I fought Frankenstorm for a work conference…and it was soooo worth it. I had a great week!)

By Friday I noticed that the pink spot was less pink, but a small “bubble” had developed in part of it. Basically it just looked like there was fluid under my skin. It wasn’t a different color or anything and really didn’t seem to be like a boil or anything to be too worried about. After the weekend, I figured I should call my doctor just in case because I also noticed a “soft” spot a few inches away from the bubble. I don’t know another way to describe the soft spot other than…you know when you hold a peach and its ripe and firm but there’s a soft spot that you can feel even though the spot isn’t turning dark or a different color than the rest of the peach? That’s kind of what this feels like. Needless to say, I called and spoke to my nurse and she told me to get in the office immediately. I was like, “ Whaaaa? Why you bein’ so dramatic?!” I even said to Maren, “I think she’s just being a drama queen, but I’ll go anyways.”

As you can guess by now, especially since NOTHING has been easy for me, my appointment didn’t go the way I had expected. My doc looked at the bubble and soft spot and said, “This isn’t a good sign. There’s infection around the expander and your body is starting to reject it. I need to get you into surgery next week.” WTF???? NEXT WEEK???? I’m usually on my best behavior in there, but yesterday my first words were, “Holy shit I need to do laundry.” LOL Yes, of course I wasn’t immediately worried about surgery…I was worried about the amount of laundry I need to do before my parents get here. What am I, 18??? Geez.

Turns out, my body doesn’t like the left expander. (I could’ve told you that 6 months ago.) The best thing to do right now is to get this beast outta here. YAY!!! So here’s the plan. He is going to take out the expanders and clean out any infection he sees. I’ll get my implants and tummy tuck NEXT WEDNESDAY…OMG!!! I’m now on a stronger antibiotic and will stay on it for at least 30 days. He filled me to 800cc yesterday and I’m now done with fills. I can’t tell you how painful it is right now. My left expander is so far into my armpit that it’s sitting on more nerves…and I’m not sure how to put on deodorant. It’s weird. I’ll be glad to have boobs that sit up in front. And the worst case scenario is that the infection doesn’t heal and I reject the implant…in which case I have to start over. Yes. I said it. Start over. More than likely I’ll be fine and just get my implants faster than I expected. That’s what I’m planning on at least.

I’m freaked out that it’s happening so fast, but I really feel a sense of peace about it all. I know that getting the expanders out will make things so much better. My worries right now are around getting my apartment cleaned up, laundry completed, finding a recliner to rent that lifts, mourning the fact that I can’t Black Friday shop this year, and picking out movies/tv series to watch 22 hours a day with my parents. Not bad for a girl with an infected expander and a week to prep for surgery. This will be the first Thanksgiving in years that I didn’t spend with the kiddo…that part SUCKS. I’m sure I’ll make it up to her though in the form of gifts and future trips to see her. I’m soooooo ready to get this next big milestone past me so that I can focus on the next one….nipple tattoos. Yes, I’m still considering stars or maybe the shape of the state of Texas…hmmmm decisions, decisions.

-just kidding, mom…well, maybe 😉

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.

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.)


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!

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.


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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