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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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.

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!)

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!

Silicone

The thing about my current fake boob is this:

I am confused about cleaning it.

I cant wait until the silicone is inside my body and I don’t have to open my browser and Google, “how to clean prosthetic breast”

But I just did that and now that I’m sure I’m doing it correctly, I won’t have to Google it again.

Also.

Mastectomy bras offer absolutely no discretion when it comes to the nipple. However, my fake one doesn’t HAVE a nipple so I have walked around for months now with lopsided nipples. Im sure people think I just have one nipple that is over active. On the other hand, when I see a woman with one active nipple, now I just assume that she, like me, has a dumb mastectomy bra on and her fake boobie doesn’t have a nipple either.

Do they even make them with nipples?

How many times can I type that word in one post??

Anyway, Im off to wash my fake boob.

 

PS If you need a good strapless or multi-way bra for your prostetic boob, and- like me- you cant find a good mastectomy one, Victoria’s Secret‘s new Body by Victoria line has a really great multi way bra that holds the boob in really well and curves around it naturally. There is no ‘drop off’ effect and I have no worries that the boob is going to go flying through the air, like it tends to do when Im not wearing a mastectomy bra!

What’s Your Pain Level

How is it that our doctors don’t scour the internet to read forums and see what people are saying about our treatments? How is it that I have heard and read (even on the packaging for my lovely Tamoxifen) that certain side effects might just happen to a number of women but my oncologist says that is not the case?

There is nothing more irritating than knowing something is not normal and having a doctor or ANYONE tell you that it has absolutely nothing to do with your treatment and then STILL not help you figure out what it is. When the response is, ‘It’s not the meds, keep taking them.’ And you ask, ‘What is the issue, then?’ and they can only answer, ‘I don’t know’ and go no further to help you, there is a problem.

A very serious problem.

I don’t care about that the fact that the ‘issues’ are probably not life threatening, it is just that I know there is something up and I want to know why. I want it acknowledged that something is not right.

I mean, I haven’t complained to my oncologist about the silly things:  the acne (I have NEVER had acne in my life but this hormone blocker is making me break out like an 8th grade boy), the expanding hips (Ill just keep up my workouts and complain to Blake and all of you about that one), the cracked and peeling finger nails, etc… But I have told her about the things I think she can either help or reduce and the things she may want to know about as they are considered abnormal or serious on the packaging.

Those things include blurred vision and trouble focusing and constant sore throat, bone pain and severe uterine pain.

My cycle has moved from a solid 28 days to 30 days, to 34 days, etc. It hung in there for a while but recently it went all the way to 46 days. On day 43 I doubled over in pain while taking a shower and freaked myself and Blake out. The next morning I called my oncologist and she told me to go in to the ER to get checked out.

I did, of course. I do everything they tell me. I can’t help it.

I  wasted 5 plus hours of my life only to leave the ER with no information. The doctor did not tell me any of my test results or give me copies as I requested. Instead, he came in and said that he had talked to my oncologist and had decided that it was all in my head.

Of COURSE I was making up the horrible pain and absentee period! (Sorry if that is TMI, but bodies are strange creatures and that is actually relevant)

Completely logical explanation.

The next day I received a call from my oncologist’s nurse and she told me that they did find a cyst. This is not abnormal to me, as there are cysts in every ultrasound I have ever had. I even told them there was probably a cyst there, but this was not normal pain for a cyst. Nor was it located in a normal cyst pain area. Anyway, she told me it was probably the cyst I was feeling when I experienced the pain- the pain that I informed her had dulled but was still present. I inquired about the, now, 44 day cycle. Her response was that my doctor said it had nothing to do with my estrogen blocker. That’s it.

Up until last Friday I experienced that pain constantly and I had absolutely no idea what to do about it.

My positive thought is that I go see my surgeon two weeks from today and he and his staff seem to know more about the treatment of premenopausal women than my oncologist does. They prepared me more than she has, for sure. I fully expect to leave the surgeons office with answers or at least an idea of what is going on and I know they will help me if they can- if it is possible.

Because dang it! It hurts!

Maybe it wouldn’t be so annoying to me except that I DO NOT complain about pain. I just don’t. Not until it is ridiculous.

My mother used to stare me down when a nurse asked my pain level after surgeries. My answer is always 3. I think any pain that is not making my want to kill things is a 3. I have gotten screamed at by my loved ones for refusing pain meds more than I can count. Going to the doctor and asking for help was really tough for me to do, but I was really in that much pain. And I was scared.

So. Do you guys have any info you can share? And advice or links to advice? I’ve read every forum and popular medical site that addressed this with little luck.

Bald on the Inside

I feel like I should regularly have more updates for you all. I mean, the exciting life of a breast cancer patient is never ending, right?!

Well. Not so much.

I have pretty much the most boring life ever, right now. But I’m okay with that.

And most days I worry or think about normal life junk more than breast cancer junk. Stuff like money. Where the hell does it all go and why don’t we have any? And my dog. Why does he shed SO MUCH? What if he secretly hates me? If I ever have babies will he hate them?!

But breast cancer is occasionally a part of these worries.

For instance, I wore the foam boob the other day because sometimes it’s just less.. hot. I went to the pet store to buy dog food and look at cute animals andsomeone got to witness my prostetic falling out and onto the ground. In the PET STORE. By the gerbils. He handled it well though. He was crouched down next to where it fell and just kinda did a double take at it on the ground, picked it up and handed it to me. Then we continued on with our conversation.

It was a beautiful moment, really.

But on the drive home my brain went haywire.

I’m wearing the foam boob for lots of boring clothes related and comfort related reasons. What if I lean down to hug an adorable child or seated adult? What if I go all sorority pose for a photo op and lean down a little too far?! What if I do these things and that boob just flies out?!

Well.

It’d be a memory…

But really. Sometimes it’s just hilarious.

The hot flashes are funnier, but I wont get in to that.

I wish the other side effects were as funny as the hot flashes. But I have yet to make a memory out of the joint and bone pain, the uterine pain or my constantly growing rear end.

Okay, that last one is just funny on its own.

But really, I know I’ve got it easy.

I had my check up the other day, and while I was the youngest and I got some pretty ridiculous looks… I was also the ‘healthiest’.

It’s okay, though. I didn’t feel left out.

98

I think Ive posted this before, but I thought it was fitting to post again 🙂

I know we are all bald on the inside.

July

July is a special month for me every year, especially this year.

This year Ill  turn 28 and celebrate ten years since my amputation.  I know that sounds weird, but it is kind of a day to celebrate.

July 24th of 2003 is a day to celebrate the anniversary of because it marked the day that ended a two year struggle. In two years I had about 6 surgeries/procedures (some I traveled for) because of all of the issues with my knee replacement, I was constantly in pain and, at one point, it was best for me to use a wheelchair while I was in high school. (I actually stopped using it my senior year, against my mothers wishes…so maybe it was best for me the entire time.)

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Other things Ill do this month?

Wait on a doctors appointment my Oncologist is setting up (more on that when I know more. keep your fingers crossed for good results!)

Speaking of Dr N., I saw her Friday! I had fewer tests than I would have liked to have… (strange idea, for most) but what I did have done showed positive results. Ill see her again in December, but I am to call her if I have any painful side effects from the meds. Let’s hope that doesn’t happen!

Here are a few photos from my visit!

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makin this gown look good!

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Cancer number 1 and all of those surgeries didn’t leave many working veins for these guys.. and my left arm is out of commission!

Im sorry Ive been over loading you guys with photos! I just can’t help myself 🙂

I like big butts and I cannot lie?

Tamoxifen. I know you all are probably SICK of hearing about Tamoxifen.

But listen, it’s new for me!

And it’s freakin’ crazy what it does to me and my body!

Obviously, by body is a little wonky for a 27 year old woman, anyway, but this sure doesn’t help.

I mean, with Tamoxifen, I may as well be going through menopause. I’m not even kidding.

Just a few short weeks after I was diagnosed with my Breast cancer, I was given my fertility ‘diagnosis’ from my TLC doctors (Taking on Life After Cancer – I go to keep up with my side effects from the year of intense inpatient chemo and such from my Osteo) and it was on the really low end of the normal spectrum, but there was still a chance. To me, that would mean that my body’s on a cusp, right? It’s a precarious situation! Like balancing a see-saw at the playground!

I went from living as a seemingly normal 27 year old, pre-manopause, to something else.

I am not used to these insane, monumental body changes!

So, sure. We all know about the EPIC hot flashes it causes. Man they are epic. I feel like I’ve been dropped in a deep fryer on a really regular basis. The muscles in my legs and my abdomen are the worst- they burn from the inside and I literally think I’m going to cook! Haha It gets intense, especially in this Alabama summer heat!

(These Hot flashes ARE SO INTENSE that I have woken up in the morning to start my day with my pajamas all over the floor and hung up in the sheets… I have done so with NO memory of stripping them off in the night! My brain is so upset by them that it won’t even wake me up to take off the clothes! It just makes me do it!)

And you all know about it causing me to be exceptionally exhausted every afternoon, no matter what I do (unless I drink a spark!). You know that it’s not just normal tired, but crazy headache, wobbly eyed, pms-y tired. And some of you are probably experiencing these same exact things.

But here is what is currently weirding me out: I have not gained a pound, but my hips are growing!

The men have always joked that the women in my family get a little bigger down there as we age… but this is crazy. I have no aged, yet!

I was warned that I might gain weight, so I needed to keep up with my exercise and healthy eating- that hasn’t been an issue at all. I get hormonal weight changes and bloating- sometimes up to 5 lbs- and that;s new, but only lasts a day. My waist is still the same it was the day I started the meds (maybe an inch smaller, even), but my butt… that’s a whole other story.

I had no intention of going through any of the physical changes of menopause at the ripe age of 27! Since I am, I guess I will just embrace my butt and do some extra squats! Let’s hope nothing too weird happens to my body before this is all over… and let’s hope my butt doesn’t get too much bigger, I have a wedding dress to fit it into!

PS Please don’t let me start growing random hairs just yet. Please. I am not ready for that, not yet!