PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Wednesday, July 20, 2011

Misery loves company..but apparently company doesn't love misery?

It's funny...the post that I wrote entitled "No Words" a few months ago almost didn't get written. It was probably at my lowest point, and I didn't think that anyone would be interested in seeing that side of me. I also didn't want to scare off people reading this blog, who were potentially debating on having a mastectomy. However, it actually had the opposite effect. To this day, it is the most read post on my blog (116 views) and I've had several e-mails about it. "Honest and moving" is what one comment read. In fact, in addition to the two testimonial type things that I wrote for The Breast Reconstruction Guidebook", the author is using part of that post in the book. (The book will come out next summer). I say all that to say this, since I'm pretty much in the same mood NOW as I was when I wrote that post, maybe this post will be just as popular. Or this will be the one that causes me to lose friends and eventually get committed to an asylum. It's a toss-up really.

Poor little naive me, thought that once I had my PBM in April that I'd be ok. I thought that all of the stress and worry would be gone and I'd be happily on my way to wonderful foobs (and fipples). Fast forward three months and a few days and I'm just as stressed and worried as I was then, Except now I REALLY can't put my finger on what's bothering me. Feeling like damaged goods, maybe? Spending an extra 10 minutes in the morning obsessing over whether or not my fake boob is even with my boulder boob? Being hot because our 100+ humidity days do not lend themselves to layering like I am having to do (a shelf camisole under EVERYTHING plus occasionally a cardigan on top to cover up the un-even boobage I have going on? Dealing with stress the best way I know how but the worst way for me (eating?) ???? So, see I have lots on my place. Not to mention a new job and a new semester staring me in the face. I already didn't pass AP 2 last semester..if I don't really bring it this time then it's bye-bye nursing school. Or maybe it's the fact that I feel like such a broken, damaged person that I can't have a nice, normal relationship with anyone. I feel almost unworthy of love and attention from anyone. I know, I know that's stupid and silly but it's the way I'm feeling right now so bear with me. Or maybe it's because I feel incapable of being what some people want me to be. OR it could be because I'm nervous about telling my new job that I need off a few days for my lat flap (I work at home, so hopefully I can stagger in my "office" and work a few days after surgery) See why I feel crazy and stressed?? Before anyone reserves me a bed in the mental hospital, take my current situation into account please.

It's just hard having to go this alone. Not alone, alone but there's really no one I can talk to honestly and openly about everything. So unfortunately that means that my readers are my only sounding board and get to hear all of my rants and ramblings. When I think about how much is ahead of me, I get tired. In a perfect world, someone out there (I'm not sure I care who now) will hold me when I cry, tell me I'm a beautiful person inside and out, promise to be there every step of the way, and hold my hand through everything I have to go through. But truthfully, it's almost hard for me to take that. Ever since I was young, I always thought it showed weakness to cry and lean on people. That means my stock answer to "How are you?" is "FINE!" and "Do you need anything?" is "NO!" I've said it before, but I guess it's because I feel like people have their own problems and don't need to be bogged down with mine.

Oh and did I mention that my right side scar is itching SOOOO bad!!! =(

I know, I know...when I look back on all of this it'll seem so far away, I'll be a better person BLAH BLAH BLAH. I'm just not to that point yet.

Well I'm done rambling incoherently now. Time to hit the gym, and see if I can bust some stress the healthy way

Monday, July 11, 2011

"Can we pretend that airplanes in the night sky are like shooting stars? I could really use a wish right now"

I actually heard that song on the way home from my PS appointment today. But I thought it fit my mood, and honestly it's too hot here right now to put a lot of thought into a clever, witty title so there you go :)

My PS appointment.....BIG SIGH. I didn't get another fill like I thought I would. I have 910 CC's in my expander and she said with a 800 CC implant that leaves enough of a skin pocket for the implant. I also have excess skin under my arms (hey I was a big chested girl) that she said she could lipo off when I had my exchange.I'm pretty happy I get a break from fills for awhile.

We also discussed my other surgery. She had said they had discussed latissmissus flap vs. tissue expander...but the general consensus is that I'd be better off doing the lat flap for my right breast. I had always thought that I'd leave it up to my PS..that I knew what I wanted to do but she knew what was better for me medically. She said that she would like both of them to be the same (so would I) but if I want to get back to school and back to LIFE in general, that the lat is the best way to go. She said that they will divide the sensory nerves and there really isn't much pain involved in the surgery. She said at worst that it'll feel like I had a really rough workout (oh boy). She said she's had patients tell her that the lat flap is less painful than the TE placement.. So hopefully, it won't be a big production for me to go through...just wham, bam, thank you ma'am and I'm back to normal. Another good thing is that the fills will be quicker, because the TE doesn't have to get as full since there's the lat muscle there as well. So that's DEFINITELY a good thing.

So those are the pros- here are the cons. I'll have to stay overnight in the hospital...pretty sucky but it's doable. Since I'll have one implant and one latissmissus recon, the appearance of both breasts (in clothes) will be the same..not perfectly symmetrical but what real breasts are? However, the scar pattern will be different on the two breasts. I know that those fade with time, but it's still in the con category. Also, the two breasts feel different. The implant side will feel...well like an implant. The lat flap side will  feel a lot more natural. On the left side, the only thing standing between me and the TE is a layer of skin and some pec muscle. I'll have a nice big hunk of lat muscle on the right side, which will give it a softer, more natural feel. She said that I would be able to tell the difference and whoever I was with would be able to tell the difference. Uh-oh. Now granted Mike knows about everything...but a girl wants to feel and look normal, you know? When I'm with someone, I don't want to be thinking "Ugh, I'm all scarred and funky looking..and of course they feel different so it's obvious they're not real." This is probably a dumb thing for me to be thinking about, but I can't help it. This surgery as a whole does a real number on your self-esteem and body image. Just something I'll have to deal with I guess. And I'll have drains again...not sure how many. I'm hoping for one but I'm betting on two realistically. And they do SUCK. Literally and figuratively. They're uncomfortable, hard to carry around, and someone has to help you empty and record the output. Trust me, it's very hard to feel attractive when someone is holding a cup of bloody drainage from your surgical site. Also, I feel like I'm reaching the end of people's patience with this whole process. I'm scared I'll end up driving myself to the hospital next month.

Since I had my expander removed on 5/18, the doctor says I can have the lat flap surgery on 8/18, or around that time. That should give me plenty of time to get well before school starts on 9/7. So if you'll notice, I changed the date on my countdown clock to 8/18. I'll change it again once I get the firm date set. And then the waiting begins again.... I feel like my whole LIFE is governed by countdown clocks!

Monday, July 4, 2011


I know I mentioned it when my grandmother died in April, but since there was so much happening for me in such a short period of time, I feel like I didn't get to really touch on the subject. I stand by what I said before, that I'm glad that her suffering ended. It was truly hard to see her towards the end. And I also stand by the fact that I feel lost. I tried to visit her as much as possible, and when I couldn't we'd talk on the phone. She was great! I have yet to find another person who's face lights up when I come to visit them like her's did. I felt like I could talk to her about anything and she'd listen and not pass (much) judgment. It's definitely an adjustment now that she's gone. I have several of her things at my house, which make me feel a little better (her cross stitch pictures, a quilt she made, her jewelry armoire and some jewelry). I guess I just feel like I didn't really get the chance to mourn like a normal person..I had to get through the funeral without crying much (she made me promise not to cry when I gave the eulogy), and then I had finals, surgery, and recovery from surgery. I'm just now calming down from it all!

I'd mentioned before that I spoke at her funeral. The day that she died, I wrote out what I was going to say. Of course I didn't save a copy on the computer, so I wanted to type it out here so I'd have it saved somewhere. She basically told me she wanted people to know that she was a good person, and always smiling. And she wanted people to laugh. I also had a time limit imposed (by her). So, I think what I wrote met all of those criteria. If not, I'm sure one day when I get to heaven I'll hear about it :) Bear in mind, I ad libbed a couple of things but stuck to this general guideline. I just wanted everything down in case I got too nervous and ended up just reading it. Here it is:

"One day, visiting my grandmother, she began asking me what I thought about her funeral arrangements. I knew she was meeting with the pastor soon, and these things were weighing on her mind. She then took a deep breath and asked me if I would mind speaking at her funeral. She asked it so seriously, it actually rendered me speechless for a minute. When  I recovered from shock, I told her I'd be glad to. Then, knowing me as well as she did, she looked me in the eye and said, "Honestly Michelle try to keep it to under 3 minutes. I know how you like being the center of attention." So, I'll try my best not to dissapoint her.
When I try to think of a memory of my grandmother to share, so many run through my mind. Because I lived in the same hour as her for most of my life, there are not only the memorable moments, like holidays but the simple day to day things that only my grandmother could come up with. For instance, once at Christmas time, she was sitting on a large box, taking pictures and opening presents. When it came her turn to open her present from my grandfather, she realized it was a necklace. She looked up at him and said "Oh a silver necklace! How nice!" and he says "Actually, it's platinum" to which, she promptly screamed and fell off of the box.
I think I speak for all of the grandchildren, when I say that our fondest memory was of Granny's Camp. My grandmother had all of her grandchildren at her house for the week. a task I'm not sure she was up too..since there was only ONE week-long Granny's camp. That week she had to put up with such antics as me boldly proclaiming that the safest place to walk down the road was in between the yellow lines in the middle of the road, I can only imagine her surprise and horror when she looked out of the window and saw all of her precious grandchildren walking down the middle of the busiest street of the neighborhood. Although the week-long camp never happened again, that wasn't the last time that Granny bit off more than she could chew. I remember one August, she decided she was going to get up and cook breakfast for my sisters and I before we went off to school. That lasted all of 2 days, until she realized that kids go to school way before 12 noon, which was the time she normally got out of bed.
One memory I'll always have is my grandmother's fiery red hair. I always thought that God knew just what he was doing when he picked out her hair color because it matched her personality so well...until my mom told me that it was more Clairol and not God who gave Granny her red hair.
 Another thing that my cousins and I will always remember fondly, is her vocabulary. I honestly thought that words such as "Geehosaphat" and phrases like "I'll jerk a knot in your coperosity" were in the dictionary. That really got me some strange looks when I started repeating these phrases.
I could go on and on for a lot longer than 3 minutes talking about the different things my grandmother did. As eccentric as she was, Granny was always someone you could go to with anything. While she may tell you just how wrong you were in doing something, she always looked at you with an understanding smile and love in her eyes. Sometimes, she even offered advice. One time, while my sister was discussing her romantic troubles, Granny says "Get married and then fall in's the old fashioned way." She was very supportive of anything that we did and would listen to our stories for hours on end, with the rapt attention that one would give a good book or a suspenseful TV show. And no matter what, she was always ready with a smile. I can't think of a time that I saw her, that she didn't smile. We found a poem that she  wrote, called "The Value of a Smile" which  I think sums up her personality. In the poem she says "A smile costs nothing, but creates much. It enriches those who receive it, without impovershing those who give. It happens in a flash, and the memory of it sometimes lasts forever." On the morning that she died, right before I left the house, I came in to say my goodbyes. When I looked at her face, finally at peace, I could still see a hint of a smile. Even though there will be a big hole in all of our lives, now she's in heaven, singing with angels and smiling down on those she loves."
When I was a teenager, my grandmother and I didn't really get along. I don't know if it was because she lived in the same house as I did and I saw her more of a mother (and what teen gets along with their mother?) or because we were very much alike. I want to say I regret that HOWEVER I think that short period of not getting along helped me to appreciate her as I got older.

I'll always remember when she told me, "Sometimes you'll hurt, sometimes you'll be sick. Take your medicine, do what you do to have to get well and move on. Don't dwell on's not your whole life" Well something to that effect!

I know I've said it before, but my grandmother readily agreed that I should have my PBM. Having her blessing, made the decision easier. Even though she couldn't be with me on surgery day, I have a feeling she convinced God to let her watch..otherwise He would've gotten an earful :)

 We love and miss you Granny!

Me and Granny at my cousin Jenifer's wedding. This was during her last round of treatments for Inflammatory Breast Cancer. This was in October of last December she'd go into the hospital with pneumonia, and then her health never got any better. She died this past April 
My sisters and I with Granny on her birthday. She died a week later.

Friday, July 1, 2011


You know that old song that goes, "Ch-ch-changes" and the rest of the words that I can't remember. That has been stuck in my head for the past couple of hours. Now, mind you I was up at 4 am to travel 9 hours round trip to pick up the MDA kids from camp so I could just be crazed with fatigue. However, the song seems a little appropriate so I'm going to go with it. And since I can't seem to nap even given my long day, you will be forced to read my ramblings on the subject of changes.

Obviously, the biggest change in my life as of late is that I had a PBM. Duh..most people wouldn't be reading this and this blog probably wouldn't exist if it wasn't for that change in my life. Was that change for the good? Yes, it ultimately was. And intellectually I know that. However, with me being stuck smack dab (excuse my southern-ness) in the middle of  the whole process, some days I have trouble accepting that. It's not that I want my old breasts's more that I'm tired of taking my shirt off and seeing one breast in my armpit and all lumpy and one flat side, completely nipple-less and scarred up. I'm also tired of having to stuff my shirt...and worrying about the fake boob falling out or sliding over (which it really does in the gym). And I know that this will all soon be over and I'll be going on with my life, I just need to be patient BLAH BLAH BLAH. Everytime I think of my exchange surgery when I finally get my implants I immediately start singing "Fa-la-la-la-la-la-la-la" because it'll be CHRISTMAS before it happens. **DEEP BREATH**

Another change in my life is that I recently (like yesterday) resigned from my job at the Great American Homestore. It's something that I put a lot of thought into, and I now know is the right decision for me. I will really miss the friendships that I made and the atmosphere (sometimes) of the office. But, I knew that a) there's no way I'd get to full-time status again, business was just too slow and my job had been perfectly kept up with in 1/2 days. And that's really unacceptable for me to work right now, considering I have a year before I start clinicals and won't be able to hold down a full time job. b) Not that it was verbalized, but I could tell that the idea of me coming back and still having to go through doctor's appointments and surgeries was less than appealing. And I really don't blame is frustrating having to run around and try to cover someone's desk while they glide in and out of work. HOWEVER I tried to make everyone understand that this was a long process anyway, and given complications (which I've had my fair share of) would take even longer. c) when I looked at the school schedule for the Fall, none of the classes I needed were offered at night or at 8 am or on the weekend. They all start after 9 am and go until 11:15 or later. That is just not possible if I were still at GAHS.  and d) As far as missing people- I'm not falling off of the face of the earth. We can still talk, email, phone, Facebook etc. So when this job at Sedgwick CMS presented itself that a) was work  at home b) I made more money c) was full time d) had a more flexible schedule and e) the health insurance and benefits package is so much better than where I'm at now, I knew I had to take it. So I think this will be a good change!

Another change that I think will be a good change is that the MDA camp was moved to Center for Courageous Kids in Scottsville, KY. The kids (and parents) were freaked at first, but after talking to all the kids today it seemed like they had a wonderful time. I think they are going to try to get the camp moved there next year as well. However, it may mean I am unable to be a counselor, since the camp has a live-in staff and isn't in dire need of volunteers. I will definitely try, and if I can't be a counselor, I'll be a bus buddy again or whatever they need. I love MDA and all of the kids so they're not getting rid of me anytime soon :)

There's also some smaller changes happening that will affect a big part of my life :( I can't really elaborate but just know I'm one unhappy girl (right now). I know after reading this, everyone's probably wondering why I'm complaining. Every change I listed is a good one right? Well, it's mainly because I hate change. I am very routine oriented in everything that I do and I don't like to deviate from the routines I already have in place. I find comfort in doing the same thing day in and day out (I know it sounds boring, but it's not as bad as it sounds!) But, sometimes life isn't fair. I've got to accept the changes, hope for the best, and keep moving :)