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.

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!

Foaming at the Mouth

A few nights ago, while I was fighting to sleep, my thoughts took a rather obsessive turn and I followed through with my obsession and hit up Google, for the thousandth time, about a topic already in my search history. After roughly an hour of hiding under the covers with my phone so as not to wake my husband with a jarring light, I realized exactly what I was doing and grounded myself. Then I posted a jest on Facebook about how absolutely crazy I can make myself.

While it was a joke, it was obviously received loud and clear.

The topic is a very serious one.

I have lightly touched on the invincibility a childhood cancer survivor can feel and how it affected my breast cancer diagnosis. I generally put off going to the doctor over anything until it was too late- until I had developed a fever of 101 or until I had realized exactly how gross and sand papery those lumps felt (one month after my boyfriend told me to go have them checked out).

At several points in my life I had the gall to say, “Life is not so cruel that I would have TWO TOTALLY DIFFERENT CANCERS before I hit 30/50/70.”

Well, life showed me, didn’t she?

So the topic of interest is the level of hypochondria I have now.

Pardon my French, but this shit gets crazy!

The status I posted is as follows:

This whole second cancer before 30 is turning me into an insane hypochondriac. I used to be exactly the opposite (which led to putting off going to the Dr about my booby lumps). Blake is too, only he’s all, “I think I’m getting a cold/the flu/a stomach virus/ear infection” but it’s usually because he sneezes once. I, on the other hand, think of some really morbid stuff because I’m (probably) having side effects from my cancer treatment. I Google to see if it’s a side effect- if it’s not or is uncommon I Google more. The next thing I know, I have 7 new cancers and rabies.

I think I’m a little misleading in blaming Google for my self diagnosis, because sometimes I give myself a diagnosis and check to make sure that I am correct.

I have never been offered any support emotionally when it comes to my recent diagnosis (As far as professional support goes) and I am finding that to be kind of weird. This is obviously a real phenomenon. Of course we do this to ourselves! Even if we only do it every now and then at 4 in the morning and we can ground ourselves and make jokes about it- it is real.

I don’t think I realized that until I read all of the comments I received.

I also think I am more on edge about what is going on with my body because I have an oncologist that is so unreceptive to my worries, so blasé about my aches and pains and side effects. Not only that, but my general physician is a complete twat and the office is a joke. Seriously.  (I’d love to change to another one but this is not currently an option).

Anyway, these are all topics I intend to mention when I mean with Dr. N on Friday.

I’ll keep you guys posted.

And no worries- I am not going nuts over here, I am balanced, I do not worry a lot (but when I do, WHAM), I know I don’t actually have rabies, etc etc etc.

I am fine. However, my humor may be a bit morbid.

People I kinda liked.

I just read a blog post that RESONATED with me. Really reallyreallyreally resonated with me.

I would like you to read it, too, because she said it so well.

Click me to read it

I found it because I have started following her after the fact, and she referenced it saying how sorry she was about the misplaced guilt it produced. (you can see that here)

I think it’s important for me to reference BOTH posts because both of them are necessary.

I mean it when I talk about gratitude for you guys. I mean it more than I can properly express. If you get a thank you card from me, I dont just do that for social graces- I do that because I am TRUELY thankful for you and your actions.

That being said, I want to tell you a bit about the things people do and say when you tell them you have cancer.

You can lose friends over this crap. Really. Not even kidding.

I have.

I was so upset by it when it happened. I told a friend for over 8 years about my little predicament and what do you know? I was deleted on Facebook and suddenly all of my texts and calls weren’t answered. That sucked. Realllllly sucked. I may or may not have called them out on it and told them they need to learn to deal with these things like an adult, because believe it or not- we are only at the ripe young age of thirty-ish and this will continue to happen to people we know as we age. People get sick. People get cancer. I’m just the first of many they know or will know. I also may or may not have guilt over confronting my ‘friend’. But I feel guilt over pretty much everything right now.

While this is an EXTREME case, it’s a real example of how people can be.

The opposite of that example is when a complete stranger joins in your support network and brings you dinner. Or makes you an awesome sign (there’s more to that sign that just it being made for me, mind you. Someone commissioned it, but that’s not the end of the story. SO MANY GREAT PEOPLE EXIST) . Or offers to so something INCREDIBLE for your upcoming wedding. I’ve had strangers do all of those things for me.

But grand gestures are not needed. Just basic human kindness and acknowledgement. A sweet word, even if it’s just lip service, can do about a million good things to my day. Especially if it’s a bad day (which I have). I’m not actually asking for lip service, here. I’m just telling you that something tiny is fine. Something like, “How are you today?”

and don’t worry. If you ask me that, chances are I’m going to answer you and talk about everything EXCEPT my cancer, unless you specifically ask me about it. I do that purposefully because I know cancer is not a fun subject and some people just can’t handle it. I mean, some of you I will tell all about it because I know that’s what you are actually asking me about. Cancer can even be a hard word to say.

What I’m saying here is this: chances are, if you are reading this, you are not someone that has offended or hurt me and you’ve probably already made your mark in my life with your words or your kindness. But my gosh if people don’t just freakin’ suck sometimes.

And I’ve wanted to tell people about that for weeks now!

I hope no one has any guilt or thinks they are lumped into this group. I want to reiterate what she says about not wanting to post it, but WANTING to post it, and why she didn’t want to:

“(1) I did not want to diminish the INCREDIBLE outpouring of love and support I’ve experienced from so many people, (2) I didn’t to lead folks to think that I am coping more poorly than I actually am, or (3) I didn’t want to make the wrong people think I was talking about them”

I also don’t want to seem ungrateful. I AM SO GRATEFUL.

But I’m really sad that people turn out to suck, sometimes. People I kinda liked.

You guys know that cancer poem? The one about what cancer can’t do?

What Cancer Can’t Do

Cancer is so limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit

Author Unknown

Well. I’ve heard that poem my whole life, basically. Because I am involved in an oncology camp, I hear a lot of stuff like that. But at the same time, I AM involved in an oncology camp and have a lot of relationships with people and families touched by cancer and I have seen cancer do ALL of those things. I’ve seen it rip families apart. At sibling camp one year, a girl even told me that she wished her sister would just go ahead and die so they could all do normal stuff again (wtf, right?). She was 15. Her sister was about 10.

Cancer CAN do all of that stuff. But it is really up to each and every person that comes in contact with it when it comes to what it WILL do.

So, thanks for not bailing on me. Thanks for deciding not to let cancer ruin our relationship or alienate me (or you). And thanks for all those extra things you guys do for me. Like read this fun little blog I write about cancer. ha

They should change the name of that poem from ‘What Cancer Can’t do” to “What Cancer Won’t do”.Because it CAN… but I have no intention of letting it.

Life’s not Hard

My body is so weird. All bodies are weird, really, but mine is experiencing things more weird than normal.

I can’t even imagine that… a normal body.

I wish I could go back to myself as a very young child and say, “Bekah, dear… be nice to your body. You play very rough and many people will see that (which is okay) even when you are 27. You will make marks that won’t go away. And yes, you will go through a VERY awkward phase at 10-11 years old. You will know that you aren’t pretty, but you won’t really care. Not really. You’ll care more about being tough and that will cause more scars. (But you will be pretty. Very Pretty). At 12, you will be a very pretty bald girl. Somehow, being bald will cure that awkward phase you are going through. Cancer will give you a new self- assurance. You will have doctors…. So many doctors. And you will be even more scarred. You won’t think about it as a bad thing until you are 22. You will be struggling with depression and all you will see how you and other people have hurt your body. You will spend a year in complete drug and alcohol oblivion, and you will add to those marks, but you will be okay. You won’t get over your scars and marks, but you will accept them, again. When you are 26 you will stop fighting with life. You will accept Gods will easily and find humor in the fucked up situations you encounter. You will find real, true love with an unlikely suspect and people will condemn your love. You won’t care. You will turn 27 and you will be diagnosed with cancer, again, and he will be the brightest part of your day. You will joke about who has the most scars; who is the most damaged, but after your mastectomy, the answer will be quite clear. What I’m telling you, teacup Bekah, is to be kind to your body, because no one else will. Your battle wounds are epic, even though you are small.”

That may seem like a pointless bit to tell a 6 year old. But I think it says quite a lot. I wish someone had explained to me that I would lose so much of my body (literally and NOT literally) in life. And really, I’d probably curse more. I do tend to curse like a sailor…

I don’t think I would have stopped being so rough, as a little girl. But I think I would have been more conscious of my roughness and of my body.

So, my body, like all bodies, is weird.

There are new things, though. New things, since my mastectomy…

You know when you drink something cold and can feel it alllll the way down?

I can feel it in the left part of my back/underarm and sometimes; if I’m lucky, I can feel it in my left arm. My skin is numb and the muscles are SO sore but I can feel it turn cold from the inside, almost. It is my favorite part of drinking cold water, right now.

As far as recovery goes, I’m taking a little more time than I expected. I can start using my arm Saturday. So, maybe in a week I’ll be able to see progress and strength and I can dress and bathe myself. I assume once I can bathe and dress myself and get down the stairs to my car, I can go back to work. Goals!

and now, a quote:

“Children show scars like medals. Lovers use them as a secrets to reveal.

A scar is what happens when the word is made flesh.”
Leonard Cohen, The Favorite Game

Dork-tastic

Me with my poster from Audrey and Ella. I love the drawing of Albus in the top corner more and more.

Recovery photos, most recent to older:

dressing removed

Notice the little baby bump on my chest. I am calling it my ‘firefly’. Its so silly!

Day of Surgery

JP drain tube, day of surgery

Day of surgery, Dressing

Dressing, day of surgery. I hate oxygen tubes.