Three Things.

It has been 6 weeks since surgery! Hooray! That means I am no longer forced to sit still most of the time and I can FINALLY use my crutches. Obviously, I celebrated by walked Albus. He was almost as excited as I was about it!

Also, I have had my expander filled twice. Both times with the maximum 120cc (4oz) for a total of 240cc (8oz) and whatever was put in during surgery (I think he said 120, as well. But I may be wrong). I think I need about 60 more Monday when I go back. I was TERRIFIED when I went the first time. I mean, those needles are huge!! Once it was happening I realized it was kinda awesome, though. They use a magnet to find the port. I kinda felt like a refrigerator. Then it was like my left side was going through puberty very, very quickly. Of course, I was prepared for extreme soreness after each procedure but I only experienced it slightly in my left should and upper arm. The tightness was gone by the next morning. So, my experience has been great with the expander under a lat flap recon. I wasn’t able to find many survivor stories about this sort of lat flap recon, so I am going to be adding mine to forums later today in hopes that someone like me needs it.

Now. On to the main reason for this post.

The last seven days have been a whirlwind of emotions.

About this time last week I went into my “Other Messages” folder on Facebook because I hadn’t in so long. I was greeted with what is possibly the meanest message in the history of mean messages. I’m going to share it, now. If you are really upset by cursing, there is one doosie in the message, though it is hardly the worst part, so use discretion and skip over it if needed:

“Have you changed, or are you still a miserable sociopath? I have spent hours empathizing and trying to love you, but you were always just a miserable, manipulative cunt. Did the threat of death at such an early age horribly scar your psyche? Is self-preservation the only human emotion you have left? How do you sleep at night, knowing that you lied incessantly to further your petty goals? Have you ever truly cared for anyone, or are we all just a means to an end? I wish you peace, love, and happiness. I fear you are incapable of experiencing basic human emotion.”

The message was sent from a false profile with the name of a famous WWE person, and I am clueless about who it could be and I no longer want to know. I really did want to know for the first few days. I was utterly heartbroken, to be honest. It really, really got to me. I don’t care if he knows that, either. At first, I tried to grab onto anger and not be upset- I didn’t want him to win and get what he wanted. But my ideas about that have changed over the week. I AM upset by these words. I know that they are false, now, and I know that I should pity this person. I do empathize with him because I have been that angry with someone and with life, just like him. The words still hurt, though, because I know that there was a time in my life that I was miserable, though not in the way he says.

There is one thing in particular that had made me realize his words are false.

I was nominated as one of Birmingham’s Most Beautiful people. This isn’t a contest about looks- no worries. Anyway, there are quite a few nominees and only 20 will be featured in the magazine once the results are in. It is an amazing opportunity to get word out about the charities and things that we each work with.

It is not the actual nomination that has helped me feel better about the horrible note, but rather, the amount of love I have received from people I have never even met. It was like a snowball: friends and family shared. Then their friends and family shared. Comments upon comments.

It has made me feel like everything I do matters, and reminded me that I am not the bad things someone says about me. I know that I am a good person and there are good people that believe in me and my story- as corny as that sounds, it worked. I stopped feeling the hurt and shame that note made me feel. Not only that, but the contest has caught me on fire and I am more than ready for the next thing. I am hoping to help camp with a new part of their program now that I’m healed and I’m busting at the seams about it!

So, blog people, here are the links to the contest and to my bio, submitted by the person that nominated me.

Here is the bio page: http://photos.al.com/alphotos/2014/04/bp_pics_1zip_30.html

And the Contest: http://www.al.com/bhammag/index.ssf/2014/04/vote_for_birmingham_magazines_1.html

Also, here’s a link to some really good music! It’s a friend’s band, Kenny George Band, and they are pretty fantastic, if I do say so myself:   https://itunes.apple.com/us/album/gunshy/id858654835

It is also on Amazon and Google Play. If you want to check it out on either of those sites let me know and I will share those links.

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21.097494K

I am half way through.

Okay, okay… I never even updated about the when and what and where of surgery on here…. I was too nervous.

Let me tell you guys about that, now that it’s over.

I was terrified and I have no idea why. It was my 13th surgery.  I had been put to sleep and had insane things done to me 12 times and for some reason, I was having horrible, GRAPHIC, TERRIFYING thoughts and images go through my head any time I really sat down let my thoughts roam free. I am not kidding when I say that I thought I was going to die. It was a gut feeling and I hated it.

Then the day came and I was so at peace and ready for whatever was going to happen and no longer thought I would die, because the gut feeling was gone.

Being ready for anything came in handy, because right before I was wheeled into the operating room, a change was made. But let me start from the beginning.

I had planned (along with my surgeons) to have a prophylactic mastectomy on the right side, because of the scary large fibroid adenomas and the amount of grief that was sure to cause every time I had a mammogram. We would go in and move my lattisimus dorsi muscles on BOTH sides in order to reconstruct. Even on the prophylactic side, despite it being skin sparing, so that both sides would match. Implants would go in under the muscles. Skin would be moved from my back as well. Most of you know all those other ‘minor’ things that also happen during this whole process. They aren’t so minor when you realize what is actually being done to your body, but they are surgically.

The morning of surgery, my surgeon came in and told me that Dr Long (Plastic Surgeon) would start. He would start with the muscles. I’ll explain how that works:  he would detach the back muscles and possibly the skin needed. He would not be finished, at all, at that point. Then Dr Bland (Surgeon) would perform his part- the prophylactic mastectomy. Next, Dr Long would come back in and tunnel those muscles and any skin he left attached to them under a small tendon and the skin on my side. At this point, my back would be closed back up and Dr Long would reconstruct.

Dr Long came in after Dr Bland… a little late, to Blands dismay. He drew allllll over me and assured me that my tattoos would not be touched (HOORAY!!!), and asked if he could use an expander on my left side so that I would end up with breasts the same size I started with- I am too small for much actual tissue to be moved- as it would be easier to do with an expander and then an implant. I was so calm that I just told him to do whatever he needed to do to get the results he wanted.

He loved that answer.

……Surgeons. Those egos are so big.

So, I was only in the hospital for 3 days following surgery and I left with all six drains and some necrosis on the left side (the side with the expander), though I had expected it on the small circle of skin moved to the prophylactic side, because I have read that it’s common there. In the hospital nearly half of the tissue that was moved was dusky. Within a week only a quarter was and just a few days later that duskiness became hard, which is good.  I had four drains out after 2 weeks. The last 2 came out this past Monday, 2 days before the 3 week mark. He said my necrosis is healing way faster than he is accustomed to and I begin filling my expander on the 31st, because we could safely guess that the necrosis would be healed by then. I think it will be completely healed by the 4 week mark, which is next Wednesday.

The very next day- April 1st, I will have a mammogram. Can I tell you how scared I am? Not that there will be any abnormalities, but that it is really going to hurt to put a recently filled expander into a mammogram thingy. Is this a cruel joke?!

Pathology has come back on the mastectomy that was performed and all was clear. Three nodes came out and the fibroids were so large that they went on and on about it on the phone with me for quite some time. I just laughed and said I knew- I mean, they had been in my tata since I was about 16 and one of them really was huge. I mean… HUGE.  More than 6cm in diameter and so rubbery that when the biopsy was performed last year, the marker wouldn’t stay in it. Not to mention how hard it was for them to biopsy the thing. Manually.

So glad that’s over!

Anyway, I cannot use my crutches or my arms (nothing that requires weight on them) for about 2.5 more weeks. I have gotten really good at putting on shirts and moving around without using my shoulders at all. Haha! I’ve also learned how to target specific muscles when I move (sitting up was the first thing I had to do, so my abs do most of the work, but eventually turning my torso became necessary and I had to learn to NOT use my lats. Now, I can turn and my boob wont flex. Hooray! Haha)

Anyway. I am relieved. But of course, there is at least one more surgery once the expander is full. Number 14 will be an easy outpatient surgery but, of course, it will signal relief once it is complete, now matter how fast and easy.

Here are some links about what I had done- essentially 3 different surgeries took place, but I wanted to share some lat flap info if anyone needed it.

A video, if you can handle watching a surgery: https://www.youtube.com/watch?v=ALIrQGX03dE

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/surgery/breast-reconstruction/ld-flap.html

http://breastcancer.about.com/od/reconstructivesurgery/tp/latissimus_dorsi.htm

That should cover it!

I can’t think of anything funny or clever to name this blog entry

You guys! I get new boobs in January! How exciting is that?!

Okay, actually… I have an MRI in October and if all is well THEN I get new Boobs in January.

My surgeon is still really nervous about me not having radiation. REALLY nervous.

Lets hope he’s just nervous for the heck of it and I’m actually okay and there were no rogue cells left in my chest.

Also, here is the video of us getting our wish. I talk excessively and Im sorry for that. Also, I am holding my phone at one point in the video. I’ve made sure to tell everyone this: I was not being rude. They wanted to see my furbaby so I was finding a good photo!

Click me for the video

Lots of stuff is happening between now and my surgery!

September is ALWAYS a busy month for me, as it is Childhood Cancer Awareness month, but this year I also have wedding showers and things of the sort. Then of course, October will be busy because I’m freakin’ getting married! Then there is the honeymoon and hopefully a camp beach trip. After that, Ill have about 2 seconds to rest before Halloween, Thanksgiving and Christmas.. and of course, doctors visits will be scattered about in there. And lets not forget about life. Regular, everyday life. Dishes and laundry and bills and work and grocery shopping and work and a smidgen of a social life.

In other words, Ill have new boobs before I even realize what has happened.

Then maybe life will slow down a bit? maybe?

So, tell me about your implants. I have no idea how to research this.

Also, Im 99% sure they still want to move part of my latissimus dorsi around to help out the whole process since I did not have expanders and I don’t have enough tummy for a TRAM.

If you had that, by all means… tell me all about it! ALL about it!

Mass decisions

“It is important to fight, and fight again, and keep fighting, for only then can evil be kept at bay, though never quite eradicated.” A. Dumbledore

What an appropriate quote, huh? A Harry Potter version of ‘Run to the Bear’.

Now, the post:

The good news is that I do NOT have to have radiation.

What?!

I know, right.

I have been told since January 2nd that my tumor was just SO HUGE that I would need radiation. There was not a single appointment in which I was told otherwise… Until last week.

I went in to see the radiologist on my team, and she said I didn’t need it. The side effects would do more harm than the radiation would do good.

I KNEW this would upset my surgeon, so I waited for the call from his office. I got it the very next day. My team had decided to send my case to the tumor board and let them decide. They would look over my case as MY case, not as one of the masses with my type of breast cancer. I became an individual when they decided what to do. They looked at my personal history with cancer and the side effects I have or will likely have from my previous treatments, they looked at family history, and they looked at my tumor’s personality… and they said no radiation is needed, apparently.

Would you believe me if I told you this scares the shit out of me? That I’m not that big of a fan of the decision?

I mean, I feel better now that a whole board of people looked at my case. But I still have the lingering feeling from the first day my radiologist threw me that curveball.

When I had cancer at 12 years old, I had a really aggressive treatment protocol. Like, crazy aggressive. I was in the hospital every other week for a week of intravenous chemotherapy. I lost my hair in about a day (ok, really it was about two weeks- but still).  I’ve said it all along, my curse and my advantage in this is that I have done it before. While I look forward to the arrogant surgeons and decisive oncologists, I have expectations for what will happen. And aside from that, I’ve lived in this world of cancer for 15 years. And as stated before, I’ve seen it cause some damage. From that perspective, my thinking is… “What the crap?! No! Blast me!”

However, this is better. I mean. No radiation?! Heck yeah no radiation! I wasn’t looking forward to it; I’m just programmed to think I need to be treated aggressively if I want to live, when it comes to cancer.

So heck yeah, no radiation!

My skin and my heart are rejoicing! No damage will be done to them!

I’m still not done, though. I’ve still got to meet with my oncologist and start this little pill since my cancer is hormone receptive. But hey, I can take a pill every day. Just pass it to me with a diet coke and we will get this done.

Otherwise, this weekend was a bit of a fuss. I ended up at the UAB emergency room because of an exposed stitch that became infected (EW) and some fluid buildup out of NOWHERE. Turns out, I’ve totally over done it and that is what caused the buildup. I am to sit still (don’t use my crutches) and slow down on stretching and such for a while. No more work for a bit and not for long shifts when I go back. Apparently, I jumped back into that a little sooner than my surgeon would have liked.

Oops.

I just really wanted to go back to normal. And since I have been numb up until this weekend, I haven’t been able to tell if I’m overdoing.  I’ve also had some fat necrosis in my side and around the incision. Kinda disgusting, but it has all either gone away on its own or it was taken care of today.

Plans are to get this pill going at the beginning of next month and recon in 11 months. Now, who wants to tell me about their implants??