About Fierce is the New Pink

If you’re reading this I’m assuming you know something about my story. As with all of us, my story is evolving. I happen to love my life, I just don’t love that cancer has so much to do with it, sometimes. Having cancer again, at 27, has kind of side-lined me. But this cancer won’t define me. I hate Pink. I hate Breast Cancer. I hate that it is impossible to separate the two. I hate the commercialism behind it all. Cancer is bigger than pink coffee pots and colored ribbons. You’ve gotta be fierce to kick it with a smile on your face… and that’s my plan. Again.

Time to get excited!

Yesterday was the day!

 

I had my first appointment and consultation with a prosthesis maker! Almost 11 years ago I had my leg amputated following a TON of complications with failed knee replacement, only to start college less than a month later.

Due to the extent of STUFF that had to happen to make my ‘stump’ long enough to use a prosthesis, I wasn’t able to start the process for 6 months following the amputation. Not to mention, by the time I had been on crutches for almost 3 years. I was comfortable on them and in my own skin, to say the least. So not only was using a leg not that important to me, it was kind of a hassle. I wanted to sleep in. I wanted to wear flip flops. I wanted the mobility I was comfortable with so that I could ‘run’ to class.

 

Being on bed rest for 6 months didn’t put the idea into my head to get started again, but it did push the idea to the top of my goals.

I made lists of what I hated about my first leg and demands for a new one.

Yesterday I went through both of those lists with my new ‘leg guy’ and I am ready!

I am starting the process from home- shrinking the ‘nub’ (from this point on… Ill probably call it a muffin. I’m sorry. That may sound weird, but you can take it up with my family. That’s what they decided to call it post amputation. Hahaha!) and adjusting to wearing something on it constantly.

 

Next appointment is the 18th!

How exciting is that?!

liners

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Standing on my own two feet

First of all, I want to apologize for not updating often.

But let’s just say… Ive had a crazy time planning this next surgery!

Of course, insurance caused some problems and I had to get super aggressive to get things done. Sometimes I put that type A personality to use!

My surgery was supposed to be the 23rd but as of now, it is not scheduled. I am waiting to hear back about the date.

Obviously, I’m pretty unhappy about having a really hard thing in my chest. However, we did a really good job and both implants with be the same size- apparently this is not common so I am doing a happy dance all over the place. My boobies may be more symmetrical than they were before this whole debacle. What the heck?!

Also, my oncologist is leaving! So, on to #3. Hopefully we are a good fit. We won’t know until July 21st. One day after my 29th birthday!

 

Now, you guys remember how I swore my butt was growing on the Tamoxifin? Well. It really grew during the 6 weeks after surgery. I tried to put on my jeans and they were just like.. .“Nope. Not gonna happen hun. Try your fat jeans.” So I did. And they are preeeetty snug. So we are in the middle of operation skinny jeans. Right now ‘skinny jeans’ refers to my regular jeans and not my actually skinny day jeans because there is NO WAY IN HELL my butt is going to fit into my size 3’s for a few months.

Among other things, this means Albus and I take pretty long walks every day. I really enjoy it and yesterday, despite my yucky fever in the morning and my slight cough, we went and walked the trails at the new park – Red Mountain Park. It was awesome! Much better than the boring walks around the apartment. Well, to be fair… those walks aren’t always boring. People are weird and we see a lot of people!

 

Last but not least, this blog is going to probably take a slight step to the right in content this year. Obviously I am talking more about surgeries than the actual cancer, but in the next few months I am starting a really scary journey! Scary for me- not really for anyone else, I guess. It is a big surprise though! Ill give you guys more after my first step in the scary/exciting/new adventure! It is something I have done before, but this time will be different, of that I am 100% positive!

 

Here are some photos from and a very short, adorable video from our adventure!

 

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I promise to be back sooner than usual!

After all, there is no reason this blog has to only be focused on stupid old cancer, right?!

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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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.

Quiet

Monday I had an outpatient procedure that had my family in a bit of worry. I kept it fairly quiet and have only just told people what I had done: I had a diagnostic laparoscopy in which a growth was removed from the crevice between the outside of my uterus and the outside of my ovary. While they were in surgery, they also found a funny little spot and removed it.

This is a very basic procedure but because of my extensive history with cancer, this was something we were told could definitely go both ways. Because of the uncertainty of it all, I felt it was best to keep it fairly quiet.

Until now.

Now I’m posting it all over the place because it is NOT cancer. It was just a stupid atypical cyst in a weird place. And it hurt. And it still hurts.

So, I have no appetite, I appear to be about 2.5 or 3 months pregnant and I’m sweating profusely as my body flushes out the fentanyl  and anesthesia. They are the culprits for my lack of appetite this week, so I don’t mind the sweating. I just want it out of my body.

PS I get my boobs sometime this year.

Breaking up with Tamoxifen

(Two in one day.. I know; I’m sorry! But PLEASE read this one 🙂 )

 

I am very seriously considering no longer taking Tamoxifen.

I never thought I would say that.

I never thought I would say that because I do whatever my oncologists tell me to do. And I honestly think that if Dr. Howard (my Childhood oncologist) told me to take it, I would NEVER consider dropping it.

Let’s be honest, he is a better doctor than my current oncologist.  (No worries, she doesn’t read my blog. Not even sure she would recognize me on the street or remember that I was about to get married the last time I saw her.)

I am kind of shocked at myself for even considering dropping the drug. I love modern medicine. Really.

When people insult chemotherapy I take that personally because I went through it in all of my glory and it was WORTH IT. I won’t let anyone tell me it was not worth it and green tea would have done the job much easier.

And well, I knew all the statistics when I started taking Tamoxifen and I kind of knew what to expect and I knew it wouldn’t be pretty. I told myself ‘it ain’t chemo’ and got on with it.

So, in a week I set the date for my second mastectomy. The stats are still the same this month as they were before. After my second mastectomy, chances of reoccurrence are 1%, with or without the Tamoxifen.

I’m not really feeling listing why I want to drop it from my regimen after surgery, but I do want to know how you all feel about this. If you have not taken the drug, the side effects are insane. Feel free to do some research, because it’s not just hot flashes and butt expansion. The unlisted ones are also insane (for example, lightening fast stabbing headaches up to 40 times an hour. I counted this morning. I know it is PROBABLY the Tamoxifen because of previous conversations with my medical team and because I left my meds at home when I went to the beach with Camp… and they stopped. They came back about 2 weeks after I came home and resumed meds.).

 

So, tell me ‘bout it. Pros and cons from your vantage point? Any experience??

(yes, I know I need to talk to my medical team about it. I will. But I’m talking to you first!)

Leather workout Pants

As annoying as Kanye West is with his whole… I AM AMAZING! I AM SO TALENTED THAT I CREATED TALENT! LEATHER WORKOUT CLOTHES! Thing…

I have to say… I think he is on to something.

You guys may not know this but believing in yourself is kind of a big deal. Kind of.

As an artist, I am constantly belittling myself and sometimes I just.. stop.. I stop making art because I am so scared I will mess up.

No kidding.

I haven’t picked up my camera since 2008. Before that year, I had not put it down since 1998.

To be fair, there is more to that story… but in general, I was discouraged.

And that’s okay. Because I love painting, and I started painting and drawing all the time. There was no time for photography.

Of course, I have produced some crap in my day. Who hasn’t?

I haven’t actually painted in quite some time, now, though.

So, I’m going to just tell myself and you guys that I AM AN AMAZING ARTIST!

I’m going to tell myself that every day and I’m going to keep making my little arty things until I get back into painting HUGE. And I’m going to eventually believe that I am an amazing artist in the deepest of my core. And you will believe it, too.

It works for Kanye, right?! I mean… NOTHING dents his confidence. I envy that.

Well, except smiling.

(Watch this so you know what Im talking about: http://vinescope.com/kanye-laughs-realizes-hes-laughing-now-hes-upset-799.html )

(Disclaimer: I actually love Kanye West and have all of his albums.)

Keister is a funny word

First, I want to say I am so sorry for neglecting you all for 2 months! TWO WHOLE MONTHS! What was I thinking?!

I hate to say it, but this post is not even that huge!

I just wanted to say that the weirdest things inspire me and I can’t stop laughing about the latest thing!

As you all have read, Tamoxifen has made my ‘you know what’ expand. I’m almost to the same weight I was before the great fitness extravaganza that began in Jan 2012. Over the course of a year I lost 20lbs and got down to my high school pants size. I remained that weight and size until about 2 months into my meds. I cut back on my exercise and was just maintaining before surgery and after surgery I had to cut back even more for a little while, but I bounced back to my goal weight again a month out. No big deal.

Then the meds started and the weight came back. Seriously no big deal. I’m a small person so I’m not saying I’m fat or anything- just giving you guys some back story.

ANYWAY.

I couldn’t find the motivation to get back into it. I just couldn’t do it. I knew I had extra room in my dress so I wasn’t too worried about the wedding.

But something so random hit me the other day.

It is easier to get a fit body back to being fit after surgery or HAVING BABIES if you are already fit when it happens. The having babies part is what got me. Hahah! I got up and did Pilates and worked on some target areas and had a grand ol time. I’m not even anywhere near having a baby. I literally thought to myself, “You have 5 years to get as perfectly fit as possible so that you can have a baby.” And I got up and worked out.

No kidding.

Not to mention- surgery plannin’ starts in December and I will need to be in good shape before the actual surgery so that I can bounce back faster!

So, I’m back at it! Albus is going to get some cardio in, too. Lucky fella!