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.

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.

Pass me the Ativan

15 years ago on September 11th  I walked out of my last chemo treatment. My 21st round of chemo was a particularly fun (but short, only one night in the hospital) round of Cis-Platinum. We had cake right after the pump started and I puked bright blue icing all over my least favorite nurse. Mom and I watched Titanic and all of my siblings and their friends visited me. I was given the full dose of Ativan and I was high as a kite, I remember swaying when I sat up in the bed and rambling til mom told me to lie down before I threw up again. Ha!

My treatment was in no way an outpatient treatment like it is today.

I had 4 rounds of one week treatments of Ifosomide (one hour every day for 5 days) coupled with Doxorubicin for all but one of the treatments (a 3 day drip).

Ifosomide tastes like the first day of school smells. It’s like chewing on a new pencil and the only thing that relieves your senses is Big Red (if you don’t have mouth sores), rectangular apple jolly ranchers, or some of the grape or apple bubble gum they sell in the gift shop downstairs. It was the first chemo I received and I drank about two gallons of ginger ale to wash away the taste and nausea. The first time I threw up from chemo it was nothing but ginger ale.

I no longer eat apple jolly ranchers or chew that gum. Or drink Canada Dry ginger ale.

I have a fellow camper and friend that stuck big red up her nose to relieve herself. I laughed so hard the following Thursday in clinic when she and her mother told my mother and I about how she reacted to the cinnamon burn in her nose and I may have passed the story on a few times before today.

Doxorubicin turns everything the color of red cool aid. Everything. The taste is dull, though, so I never minded it much. Not even in its high doses did I mind it. However, I only left my hospital bed to pee while I was on that drip. One time we did take the pole down to the game room where I painted and painted and painted until the smell got to me. I told my Memmie I was done and we went back to the room where I promptly puked. At least I made it back to the bucket in time.

I had 12 rounds of Methotrexate.

I hate Methotrexate with every cell in my body.

It is the brightest yellow you have ever seen and the nurses wear gloves when they hold the huge glass bottle of poison that will drip into your veins for the next 3 days.

My first round of Methotrexate left me in the hospital for nearly a month, as opposed to the 3 days it was supposed to keep me hostage.

I couldn’t excrete the horrible stuff. My body went haywire and I essentially had to be sedated with Ativan so I could physically stop puking. I left the hospital with an IV pole. I remember answering the door for trick or treaters with that pole- to kids my own age- and some thought it was a costume. But who dresses up as a 12 year old with cancer for Halloween?

For every other dose I received, they pushed a bag of fluid an hour to help my body filter it. They gave me a half dose of Ativan as often as possible. It worked. For three days I peed and peed and peed and was drugged into a daze. But I didn’t have to bring a pole home again. And now? Now I have a HUGE bladder. HUGE.

I had 4 rounds of Cis-platinum.

Twice paired with the orangey 3 day drip of Doxorubicin and once it was just doubled up (my last one).

I never minded it. It was a one night drip. No crazy reactions to it, just the usual nausea.

I had roughly 25 rounds of MTPPE, which is called something else, now. It is not chemo, but an experimental drug that looks like someone captured clouds in a huge syringe. It was supposed to be administered over one hour but the pumps were really horrible and I had to reset it about every 5 minutes, so it really took about 2 hours.

I had it twice a week every week for half of my treatment and once a week every week for the rest of my treatment.

The clouds caused migraines, fever and chills every time, but the first time was the worst. My Memmie and mother layed on top of me I was shaking so hard. My fever went up well above 100. My mother read the thermometer and called my nurse practitioner who just laughed and said that it was normal. The fear left their faces but they tried to hold me from shaking, still.

I spent the 12th year of my life with a memorized chemo schedule stuck in my head and I’ve never forgotten it. I knew what weeks were in-patient and what weeks were to be spent at home recovering (easy enough, when it is every other week unless there is a complication). I ate lemons and limes like oranges because it ‘made my liver feel better’. I craved salt. I hated regular food, but my grandparents and mother saw to it that I had whatever craving hit me. The joy on my mother’s face when I asked for a steak was beautiful. My step father cooked with pleasure.

I probably vomited that steak up a few hours later, but it was delicious.

But chemo isn’t so cut and dry, sometimes. Right before Thanksgiving of 97 (maybe my 5th week into treatment?) I was so, so, SO sick. Then my fever spiked. Mom and I trucked it to the emergency room where I was poked and prodded and was completely mortified by some of the tests the cute doctor had to do. Then he said I was neutropenic. I was admitted on a Saturday, I think. All week Dr Castleberry (not my usual onco but the one working that week) tried to bring them up and nothing seemed to work. We moved Thanksgiving dinner to a later date and eventually he gave me a pass for a few hours the Saturday following the holiday. I went home and I ate EVERYTHING.

The next day my counts were gorgeous and I was sent home.

None of us will ever forget that Thanksgiving.

Aside from the blood count issues, other things can blindside you, too. Though, I sure do love getting a bag of blood. Nothing in the world makes you feel so happy and energetic!

For my sister’s birthday party in March, we sat outside while we waited on people to arrive. It was a warm, sunny day.

Two days later the insides of my elbows and all other thin skin seemed thick and scabby and it burned and peeled. My mouth filled with sores. I couldn’t talk well and drinking was hard and painful- forget eating.

We have no idea what caused it but think it was the folic acid in the vitamins I was taking, paired with the chemo, paired with the sunshine for 10 minutes.

ICEE’s are the best comfort for epic mouth sores, though. And my mom and older brother bought me one. It was going to be delicious when I drank it!

…Only… my mouth was too swollen to drink from a straw. It wouldn’t close around the red straw. We went to every fast food restaurant located on 280 to get a spoon and started with a Spork my brother whittled down. But the spoons were too big. We searched everywhere for something that would make it possible to drink my ICEE. I couldn’t even really use the little spoon on the end of the ICEE straw without making a mess.

So we stopped at wal-mart or kmart or something… and we got me a rubber tipped baby spoon.

It was the most delicious red ICEE I have ever consumed. And that day is a GOOD memory, oddly, enough.

How does this affect me today?

Today I have hearing problems, vision problems, short term memory loss, kidney function worries and heart worries. Last year was the first year my kidney functions were off, so I’ve been lucky. And my heart is trucking along. Somehow I didn’t kill it with the substances I put in my body not too many years ago. I was such an idiot. I’ve known since I was 12 that it was sensitive from the Doxy. There have been tails that the stress of childbirth could throw in into its issues, too. But I’m not done with how this affects me today.

Today I’m told that it has come to be known that people with my treatment plan do not have issues with conception and infertility, but with early menopause. I learned that 12 years post treatment, at the age of 25.

How else am I affected today?

5 years post treatment I became an amputee. If that doesn’t change your life, I don’t know what will.

And now I have breast cancer. The same kind that runs in my family, but 20+ years too soon. No, I’m not suddenly saying it’s secondary. This is a thing that was always going to happen to me. But you can’t tell me that my hormone receptive breast cancer didn’t come early because of the hormone changes my body will make earlier than the other women in my family.

But I would never wish away any of those 21 rounds of chemo, the knee replacements, the bone infections and failed attempts at repair, the amputation, the neutropenia, or the need for a spoon to eat an ICEE.

I wouldn’t even wish away my breast cancer, even though I will walk down the aisle with one breast and one leg.

Cancer has been a part of my life for 15 years.

It is not my identity, but it is a part of me.

It has created opportunities for me- I would have never attended summer camp without it. I would have never picked up a camera without camp. I would never have met the people I did that have become so dear to me. I likely wouldn’t be as close to the majority of my family without these experiences. We wouldn’t have even moved to this state if I wasn’t diagnosed with cancer in 1997.

But why is childhood cancer so ignored?

Can you imagine going through 21 week long chemo sessions at your age? Can you imagine doing it while you were a kid? Can you imagine your kids or grandkids going through it? I know you don’t want to. But it is a reality.
In August I spent a weekend with 47 young adults that did go through that. About half of us did it while going through puberty. All of us were gorgeous bald angels at some point in our lives. But we all suffer from some late effect that is not necessary BECAUSE there is very little research going into childhood cancers.

We should have known before 2005 that my type of treatment leads to early menopause.

I shouldn’t be friends with over 50  19-35 year olds that have hearing, vision, memory and fertility problems (just to name a few.).

Pass me the Ativan.

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!

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 🙂

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.

Over Compensating (or Tales of a pretend wonder woman)

Sometimes I like to completely over compensate and try to be wonder woman. For real.

Today, for instance, I had to run a few errands- one in particular. I really needed to have my oil changed and my tires rotated and such. So, I did that. Then I went grocery shopping.

A lot of people that are helping me really hate when I go alone, but sometimes I really like to- because I’m wonder woman.

So, I pushed my buggy around while using my crutches and worked off some of my anxiety over the day (my family is crazy) and got stuff for dinner and breakfast for the week. It was fine. No big deal, just a few weird looks, per usual (That girl on crutches is pushing her own buggy and not using a motorized cart! It’s insanity up in here!!).

Then I got home.

And I had to carry the groceries in.

Up the stairs.

Why do I do this to myself?

I put the milk in my purse and everything else into a big reusable shopping bag and threw both over my shoulder. Once Id made it up the stairs, my purse broke.

I couldn’t even be upset because I was so satisfied with what I had done! Not to mention, my AdvoCare distributor packet was waiting for me on my doorstep. Hooray!

(I decided to sign up as a distributor because, what do you know if they don’t make the one thing I have found that pulls me out of my slump! The product I fell in love with is Spark- you can find the ingredient list and info here: http://www.advocare.com/products/active/A2094.aspx and my website here: https://www.advocare.com/13055182 This stuff is seriously awesome and packed full of vitamins and good stuff!)

Anyway. I am not wonder woman.

But I sure did enjoy pretending to be, today.

And others…

I know you are so happy about this: I went and got fitted for a mastectomy bra or two and got a new prosthetic that won’t pop out in public!

You can all stop waiting for it to happen when we are together, now! Yay!

I am not lying when I say that I expected it to be a horrible experience. Not sure why… but I really thought it was going to be horrible. But it was the BEST bra buying experience ever. If you are in the Birmingham area and know women who need mastectomy bras, prosthetics or anything cancer related (OR you can go and get one of the really comfy mastectomy bras even if you still have both of your tata’s) I really recommend you send them to For Ladies Only in Vestavia. So wonderful.

While I was being fitted, the lady said, “Your chest wall is BEAUTIFUL!” Without fully grasping what she said, I said, “Thank you so much!” and oozed with happiness over the word beautiful. I mean, I was a nervous wreck in there. I was at least 30 years younger than everyone in the building and I had NO idea what was going on for a minute. I was also EXHAUSTED because I went straight from work (more on that later).

So I heard ‘beautiful’ and like most women, I swooned! (That is not the reason this was a great experience, but it helped)

It wasn’t until I was driving home that I really thought about that comment. “Your chest wall is beautiful! Who is your surgeon?? He did a fabulous job!” That MUST be the same as hearing, “Your implants are beautiful! Who is your surgeon?? He did a fabulous job!” Surely it is the same? I thought about it the whoooole drive home and it still made me proud. Heck yeah I have a great chest wall! And I’m going to have two fabulous reconstructed breasts next year! (I hope)

I wanted to call my surgeon and tell him all about the compliment we received… but I’ll wait til our appointment in July, I guess!

While my chest wall may be lovely, my energy levels still leave something to be desired. I pretty much have PMS every afternoon. I’m tired, sore, grumpy and have a headache every evening. If I don’t work, I try to clean up or straighten up at least one room and do a load of laundry. At about 3, I start crashing. I don’t get sleepy so I don’t nap; I just can’t, so I will rest. I will literally sit and do nothing except watch a show or two online. It doesn’t revive me, but it keeps me going and keeps the soreness and the headaches from hitting too hard.

If I DO work in the mornings (I had previously explained to my boss that my stamina was crap so I have been scheduled for morning shifts since returning to work- until this coming week) I am up at 6, at work at 7 and work until noon, roughly. When I clock out, I’m usually so exhausted that I’ll chug something with caffeine for the drive home. When I get home, I crash for about 30 minutes. There is no stopping it. Around 5pm I get my PMS symptoms. Then it’s dinner, time with Blake, bathe, bed.

I’m not sure if it is the medicine that is making me this way, but I think it must be. This is not the same as post surgery tiredness and surgery was 3 months ago.

So, I need help.

Advice, I guess.

What can I add to my diet or my day that will help me make it through the day? (besides iron and vitamin b)

I am working two afternoons next week, starting when my exhaustion hits the hardest and going until pretty late. I would normally take my medicine at 8pm, but I’m going to push it back to when I get home so that I can make the drive home without any issues (it messes with my focus on top of making me tired). I’m just really lost for what to do about it all and thought you guys might be able to help!

I have a whole list of side effects aside from the exhaustion and eye issues, so I can’t wait to go over them with my oncologist! Maybe she can start me on B12 shots or something?

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!