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.

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!)

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.

This!

This article could have been written by me, in so many ways.

THIS ONE! Click me! Yay!

One of the things I love most about being a childhood cancer survivor (And one of the things I love most about my peers) is that life becomes richer and more intense, afterwards. Some of us act invincible. Most of us have said something about how we have already had cancer, what else could happen? If you are reading this and you’re thinking, ‘my daughter/son/cousin/nephew/whatever is a survivor and he/she is not like that!’ then I will say this- they were either too young to have it effect them the same way, they turned to God and immersed themselves in religion instead, or they are really good at hiding their actions from you.

This is just my opinion, of course.

But think about it- for quite some time our brains think we are invincible. Isn’t there a word for that in teens? Anyway, sure. We thought we were invincible, but we knew cancer kills people. Then we got it… and we didn’t die!

I know a lot of survivors that have done a lot of crazy stuff just because they can.

Of course, this same mentality leads most of us to over achieve in a lot of areas and under achieve in other areas.. but that’s another post.

EITHER WAY.

I lived a pretty secretive life for a long time. The risk taking lifestyle got pretty dark in some places.

Then I started fighting against a dark part of myself. There is a big force behind me bettering myself in a lot of ways. THEN I was diagnosed with Breast Cancer (aka cancer #2) and it made life less of a struggle. That risky lifestyle might still be there, but the dark part of it is not fighting so hard to show it’s ugly head.

Pink Ribbon Blues by Gayle A. Sulik: Book Review

Pink Ribbon Blues by Gayle A. Sulik: Book Review.

Not usually one to blog twice in one day or even re-blog, but I love this very much. Especially since I’ve had encounters with the pink ribbon as someone from the gold ribbon club for 15 years. Now that I’m also in the Pink ribbon club, I have added to my perspective and it goes a lot like this.

I was going to take a few little chunks out to tease you with and make you read it… but there are too many!

 

Let’s talk about boobs

Seriously.

Breast cancer brings up two subjects that most people aren’t comfortable talking about openly: Cancer (and therefore mortality) and boobs.

Okay, some people talk about boobs pretty openly, but only with certain people they know. But I don’t want to talk about boobs in that way.

For some girls, breasts are a major part of their identity. This is particularly the case for those of us who were blessed beyond the norm for our size, and sometimes we don’t even realize how much of our identity is put into them. I really mean identity, here- not self worth, though, that is occasionally the case as well.

Well.

In the last year to year and a half, I went from a DD to a small C and now I’ve only got one of ‘em!

I’d be lying if I said this hasn’t taught me a thing or two about myself and my identity.

I started eating healthy, working out and making an overall effort to be healthier near the end of 2011. It was super gradual until the beginning of 2012. Obviously, as the pounds shed, the boobs shrank and I was amazed! I’ve never been a big girl, but I’ve been curvy for as long as I can remember. I really loved that they shrank, and when I realized it—I found that shocking.

Fast forward to being diagnosed with breast cancer.

In the short time between diagnosis and mastectomy, I got really concerned with how much my body has changed and how my identity had already BEEN affected. Not how it would be affected (yet).

It hit me like a ton of bricks and I was ashamed of myself for being so upset about things that ‘are so petty in the face of cancer’.

I kept it to myself MOST of the time and it nearly drove me mad.

Post mastectomy, here I am.

I have 3 breast forms and I only know where one of them is right now, because when I get home I toss it like I do my shoes. I put it somewhere and hope I’ll find one before I walk about the door again.

And LET ME TELL YOU. These things SUCK.

I am 27 years old. I’m starting to get wrinkles as the elasticity in my skin gives in to being overly expressive. And, since I have been spoiled with good skin my whole life, I tend to do the minimum when it comes to creams and cleansers.

This does not just apply to my face, guys.

Skin sags!

Especially after you lose 15 pounds! (So far, I don’t have saggy arms, and for that, I am thankful.)

Let me get to the point.

Breast forms are solid. And I mean SOLID. While I may have the correct size equalizer/breast form, it is one perky little boob when compared to a normal human breast. It does not need lotion to help with elasticity or sag to the side when laid on its back. It does not mold beautifully into a favorite bra. It just… IS.

And it’s kind of plastic-like, so this humidity coupled with my body heat means that thing basically becomes a suction cup to my perfectly flat and sculpted pectoral muscle.

Taking off a bra will never feel as good as it used to, because I can compare it to taking out a breast equalizer.

Some days, particularly hot days (which I have a LOT- thanks Hot flashes caused by Tamoxifen!), I curse myself for listening to my surgeons nurse. The surgeon asked her, while we were meeting one final time to plan surgery, “Are we giving her an expander?” To which she replied, “No. Not at all.”

I had done a good bit of research on my own and saw no real reason for one, but wasn’t opposed to it, either, if they thought it would help in the long run.

So, my surgeon leaves the room and the nurse says, “I’m sure you just heard him ask about giving you a breast expander. I felt like you wouldn’t need one- and by that I mean that medically, it will be more trouble than it is worth for you. It won’t help when we reconstruct (meaning they will have to transplant tissue with or without it) and they can be really painful. We usually only give it to women to help with confidence—some women just want to wake up and still have a something there.”

I told her I didn’t really care if anything was there. Because I didn’t.

I don’t.

But boy do clothes fit weird. And if it meant not wearing these horrid breast forms and equalizers?

Well. Yeah. Sometimes I really wish I had acted like I really cared about waking up and feeling like I still had some semblance of a breast. But I didn’t.

(I would like to note that this is the case for me, not everyone. An expander can be very helpful for some women. I’m also not knocking wanting something to be there when you wake up from surgery. Totally get that, too.)

And now I have 3 breast forms.

Two are what they call equalizers and are heavy latex type things with plastic coatings. Of those, one is a size too big (::cough cough:: a size too perky) and the other is the correct size, but incredibly dense and heavy. Also, Albus just found that one and ate part of it, rendering it useless.

I also have one that is called a breast form. It is foam and not weighted, so it slides up my chest and occasionally out of my bra all together. Can you imagine your fake boob falling out of your shirt in Target while you look at shoes?

I can.

I have experienced that.

It was like I had been caught stuffing my bra or something… well, I guess I HAD been stuffing my bra, hadn’t I? Anyway, this one is super comfortable because it is light and has a cloth covering. It is usable in a bathing suit, which is why I got it (trying on bikini’s is going to be so much fun!).

In all seriousness, though. These things are rather important! I have left the house only a few times without a prosthetic, usually because I couldn’t find one and my shirt was loose enough or my bra was formed enough (or both working together) that it was just not noticeable, and as soon as I remembered it,  I got a little panicky.

I get panicky because I DO have an identity that involves my gender norm. Not only my gender norm, but I have seriously always had boobs. Realizing that takes the guilt out of caring about it and makes me see that I am not petty to care about them.

I am a woman, and I want to look like a whole woman. That is totally not petty! I am officially putting this all on the table because I think that if someone had told me this, I wouldn’t have let it get to me so much. Now that I’ve accepted it, I’m obviously okay telling you guys that my boob fell out in Target and all sorts of other things.

So, I guess I need embrace my love/hate relationship with my breast equalizers and schedule an appointment to replace the equalizer that my dog ate, huh?

Here’s a photo of that, by the way:photo(6)

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??