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.

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.

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.

783 worries and a few cliche’s

Mither (1 of 2)

Mither (1 of 2) (Photo credit: Brett Jordan)

This past weekend got me thinking about my mortally, to be frank.

It got me thinking about it because well, there’s the obvious. But also because before I was diagnosed I’d joke about and say, “I’ve already had cancer once. I don’t think I’m going to get it again for a long, long time.” But here I am. 14.25 years of remission and diagnosed again. All before the age of 30. My body is so freakin’ fancy.

This is actually something I meditated on a lot when I was first diagnosed with my new friend, breast cancer.

But that’s another post.

Thinking about that this past weekend, I realized that I really DON’T think about it as much as some would assume.

I worry about alllllll of those other things.

I’ve probably mentioned most of those things in other posts. But really, I worry about some seemingly petty things and some things that I never thought I’d be worrying about.

My first worry is my job. I have had to take off quite a bit of time because of my set back with recovery and this new pain that popped up a month later. I worry that I’m disappointing my boss, the managers, the people that pointed me in the direction of the job, etc. I worry that it won’t be my job when I can go back.

I worry about money (duh) because I’m not working and because in parking alone, we have spent about 100 dollars- and I’m not even done yet! They never prepare you for that freakin’ parking, do they? Hah

Those are normal worries, I think.

Relationship worries are huge. I’m sure this is something a lot of people relate to in one way or another.

As I’ve mentioned, I‘ve lost a friend or two since diagnosis.  But let’s go further…

I worry that old friends or people I have had failed relationships with have come back because they pity me. That new friends are only nice to me out of pity. I really hate pity, and it makes me really upset to think that- but I can’t really stop those assumptions or worries sometimes.

I have no idea why I’m putting this in print and will be posting it to the internet, but I am. It’s like I think that if I confess all of these worries, I’ll purge myself of them. Then I can surrender to life again and just feel a lot better about my situation, which is really not bad. Worrying is, though.

Anyway, relationships.

I worry that people are scared of me and what will happen to me because I’m going through cancer again.

I worry that people will get mad over my blog (self caused worry, there, but still a worry)

I worry about all of these things because at some point or another, I have known people who have had all of these feelings about a situation.

‘Oh I have to call so-and-so or invite so-and-so because they are sick/having a hard time/etc’

‘She’s only with him because she doesn’t have the heart to break up with him’

‘I had to take some time off of work because of an injury so they found a loophole to use to fire me’

The list goes on when it comes to relationships. I can literally lay in bed for hours and hours and dissect every relationship I have convince myself that it has changed or is only in existence because of the news I got on December 28th of 2012. It makes me feel absolutely psychotic! But I know it’s all really insane for me to worry about. However, I also know that I’m not the only one that thinks those things sometimes. And I only know that… because I know so many people that had cancer as teenagers. And I was their friend when they were going through it… and I know that they told me they had those worries. Sometimes we still talk about that sort of thing. So, at least I know I’m not so crazy that I’m the only person to worry about those things.

More serious worries are about my health and how it will affect my future. Not the mortality stuff… but the other stuff.  I already have quite a few side effects from my chemo and have to watch my heart because of the Adriamycin. I may not be having chemo THIS time, but I know that there will be things to watch again just because of the cancer. For instance, breast cancer is related to a few not so fun cancers and my ovaries and thyroid will need to be monitored. And sure, I’m having a mastectomy on the right breast next year, but do you know how thoroughly I check it for changes? I’m sure you do if you are a patient or survivor.

Oddly enough, I never worried about anything coming back with my first cancer, and it was actually aggressive. This time, my cancer is kind of a wuss comparatively. I know that. Doctors know I know that, and they have said almost exactly those words to me. It’s not new knowledge. But here I am. Poking already biopsied lumps and bumps just in case they change before they are removed.

I promise I haven’t gone all negative Nancy on you guys. I’m just a mildly obsessive person and when insomnia strikes or something triggers a thought, my brain can just take it and run until I catch myself. Then it’s back to meditating and deep breathing so I can laugh at myself later. And you know, tell you guys how absolutely insane I can be.

So, hopefully that purged my worries and my brain can be all footloose and fancy free for the rest of my days!

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??

People I kinda liked.

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

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

Click me to read it

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

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

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

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

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

I have.

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

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

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

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

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

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

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

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

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

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

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

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

What Cancer Can’t Do

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

Author Unknown

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

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

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

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

Gratitude

About 2 seconds after posting “Homeless man in an Armani suit”, I realized I probably come off as ungrateful to some people, myself. While I find it funny that I am so worried about this that I want to apologize, I just can’t apologize for my words. I mean them I AM sorry if I came off as ungrateful, though.

So, I’m making a gratitude list. Right here. For the public to see.

I am thankful for:

–          My grandparents. My family is unconventional and a little unstructured; my grandparents are kind of like the central location of our family. Like the kitchen in an old house, they are what bring us all together. They keep us straight and they support us, as well. I don’t think anyone in my immediate family that can disagree with this.

–          My Lady (or ‘Mom’). She sat with me in the hospital every night, every other week, for a whole year while I puked and refused to eat (ugh, chemo) when I was 12. Not to mention all the other illnesses she fought BEFORE I had cancer as a kid. Now, she supports me while I do it again, just a little differently. Somewhere in between she dealt with me as a teenager, and while I wasn’t a bad kid… looking back, I was kind of intense. I don’t know that I would have dealt with me well if I was her. Just. I’d have to tell you my whole story to explain why I’m thankful for her.

–          My sister. She’s here right now, when I need her. She is the only one that was with me for a while, when our family was split up, and sometimes we both forget that, I think. Having her around is something I don’t want to take for granted.  Also: she’s throwing my engagement party!

–          Big Brother. He and I were so close as kids. I’m pretty sure we still have secrets from our childhood that only the other knows.  He’s my bud. I’ve never even hesitated to tell him things when I’m upset or bothered. That’s not something I can say about anyone else, really.

–          Little Brother. He’s different in that he is the protective brother. And I want to protect him, as well. In our story, I think that is obvious. But he won’t convince me to buy a gun, no matter how hard he tries.

–          The C clan- My Uncle, Aunt and 2 cousins (who have been featured here!) hah. Then the girls were born I was still in this whole… “Omg babies… I don’t get it!” phase, but now, I kid you not- they are to blame, at least partially, for me wanting kids. Not even kidding. And while I don’t see them much or know much about their day to day life, their little family makes me hope I can have a little family. They are like a little beacon of hope for normalcy! (If they read this, they may laugh at that, but I hope they know what I mean by ‘normalcy’ hah).

–          My college experiences. I’ll just say this: my broken heart led to where I am now. Once college led me to another. One form of art led me to another. That life led me to this life. And there are SO many great memories, even in the midst of my screwed up days. My sorority, slursday, the lambda chi hall, apta 32, doubleplay, tubing, and music. I left Montevallo 6 years ago. Sometimes it feels like yesterday. UAB isn’t really full of memories, but I’m thankful for it because it’s there that I learned that I LOVE to teach.

–          South Side. In south side I lived life with no consequences, really, for a year. And it’s exactly what I needed, I think. I filtered out all of my crazy, and then I was saved by that little community. Even now, I think of it as ‘home’.

–          Everyone listed in “Luckiest Girl Alive

–          My job. I got it less than a month before diagnosis with breast cancer and they have been so good to me when it comes to taking off work for doctors and surgery.  Yes, it is there that I have to deal with horrid people, but I also really like it. And those small checks happen to be a godsend right now.

–          This apartment. I was lucky to get this place and now that we have it, I’m grateful for each piece of it. There is not a centimeter of space in here that I do not love and cherish.

–          Albus <3. I got Albus shortly after my TLC (taking on life after cancer) doctor told me that I would probably go into menopause around age 30. She told me that 2 and a half years ago; I was 25 and had just started to really admit to myself that I wanted a family. I did so much research to find Albus, and since then, he and I have nearly crossed the Red Sea together. Now that chances are becoming slimmer for me having a kiddo (because of FBC) I am even more grateful that I have him.

–          Olive Yew Photography

–          Coffee and diet coke

–          There is no cancer in my lymph nodes

–          I didn’t have to have a second surgery to remove more tissue

–          Cleaning for a reason  

–          Modern medicine (And the fact that only one person, so far, has told me I don’t need it to rid myself of my cancer)

–          Fruit. I really like fruit.

–          And last, let me offend or confuse or make sense, maybe. I’m thankful for cancer. How messed up does that sound?! But I am. I’m thankful for it because if I had not had cancer at 12 years old, I would not have had the complications I had and gotten Medicaid. Without Medicaid I would be screwed. I wouldn’t have been able to stomp my feet for a mammogram to find out I had cancer again. I wouldn’t be able to treat my breast cancer. That may make no sense, but I’m hoping you guys can read what I’m trying to say. I’m also thankful for it because of what it did to my family when I was 12- it brought us together and we were happy, despite cancer. The same goes for this time. It has brought us together in some ways. Ya know, cancer puts things in perspective, even for the people who don’t have it. It also led me to my camp family and made me into the sort of person I am. Why wouldn’t I be grateful for that?

There’s a lot more, but making a gratitude list is emotional and intense sometimes. Maybe we will do a part 2 one day.

Life’s not Hard

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

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

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

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

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

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

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

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

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

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

and now, a quote:

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

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

Dork-tastic

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

Recovery photos, most recent to older:

dressing removed

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

Day of Surgery

JP drain tube, day of surgery

Day of surgery, Dressing

Dressing, day of surgery. I hate oxygen tubes.

Little Accomplishments

98(This photo is of me in June of 1998, about 9 months into treatment for Osteogenic Sarcoma. I was about a month shy of 13 when it was taken)

I just realized that seven days ago I was getting everything ready for the big day! It feels like just yesterday!

I mean, have I REALLY been sitting around the house with one boob for a week?! All of Blake’s time off is over?! You have got to be kidding me.

It might be easier to imagine had I been able to accomplish more in my recovery, but not being able to walk around definitely makes it feel like I’ve accomplished even less.

Wednesday was the last time I threw up from the anesthesia. (It has always made me throw up for a few days post op)

Friday was the first day I didn’t have that post surgery hangover feeling, and I started to really get an appetite. To celebrate, I we got my hair washed and my bangs trimmed! It was the best day!

Yesterday I started defying my caretaker (I like to call him that, I don’t know why. It’s just hilarious to me) and hopped myself to wherever I wanted to go a few times. That was an accomplishment to me, but he sure did fuss. We also brought my mom some food for my sweet Albus and I got to see him. I have missed him so… I wish I could walk just so that I could have him back and be able to take care of him. Screw everything else I could do… I just want to walk my dog!

I hopped today, too (In my defense, things needed to be done and I wanted to do them). I also figured out how to put my hair in some sort of pony-tail. I can lift and hold my arm just high enough to also tilt my head down and put my hair in a normal pony-tail.  I even went so far as to announce, “I did it!” I can also almost pull up my skinny jeans all by myself. I can pull up the loose ones all by myself if I hook my little Huge JP drain to whatever button up I’m wearing. AND I can KIND OF do my own makeup. It’s not as fancy as it was a week ago, but I’ve certainly made progress, considering I’m wearing it at all right now.

Tomorrow I’m sure I’ll make more silly little progressions, and the next day, too. The only problem here is that it is all going to go to hell when I have surgery again this week.

Tomorrow my sister is bringing me to meet with the plastic surgeon in the morning and is will look over everything and get a plan for moving tissue, if needed. Then I will run downstairs to my surgeon’s office and tell him or his nurse that I’m done. Then a date will be set for the next surgery and I’ll start all over.

I am REALLY hoping they take out this drain tomorrow, even though I’m having surgery again this week. I mean, REALLY hoping. The tube has moved a little and seems to be directly in the hollow of my armpit. Right around my sweat glands…

Sorry if that grossed anyone out. But it’s life. It’s cancer…  and it’s not all pink ribbons (or gold ones) all the time. It is, more often than not, time off work for caregivers and patients, puke buckets, beeping pumps and an inability to bathe yourself. It is celebrating when you can lift your arm (or put weight on your leg), when you don’t get blood or puke on your favorite jeans (that you are wearing because they make you feel pretty, even if they aren’t convenient, darnit!) and when you finally know your protocol (maybe that’s just me. I might throw a party when I learn it).

Cancer is some weird shit, guys.

At least I’m prepared. And I won’t be bald this time (not that I would mind).

I’m the luckiest girl alive

I have a ton of support in my life. I do.

I have the normal stuff like family and close friends… but I have a few extras because of some choices I’ve made and some of my own circumstances. These extra’s include my sisters in Chi Omega, my friends from Sloss Fright Furnace and my Camp Smile-A-Mile family. I think these last three have been greatly underestimated in my life… Probably because they aren’t something everyone has. They don’t come up in normal conversations about who is there to support me, unless I point them out.
I want to do that right now.
My sisters… let’s start there. You know all that cheesy stuff you see in movies and on TV about how they are always there for each other? That’s true. It really is. (The other stuff? Not so true.)
I’m not really going to go into detail here with specifics, but I am so grateful for these girls… and I am lucky that I’ll have them for the rest of my life.

Sloss. You wouldn’t think that working at a haunted house for two years would result in what it has. I didn’t expect it. I’m still slightly shocked. BUT LET ME TELL YOU. These girls started a group to surprise me and help me with my recovery and such. They got the ball rolling for a paypall donation site. They are signed up to bring meals and they are constantly giving me words of encouragement and adding people Ive never met and getting THEM involved. I didn’t even know they liked me. Hell, maybe they didn’t! or don’t? I don’t really care. They are freakin’ amazing, though. I’m so full of gratitude for these girls…

And last, but certainly not least… is my camp family. For those of you that don’t know, Camp SAM is a camp for kids who have or have had cancer. Not too long ago, a lot of us aged out of camp and our only choice for involvement was to be a volunteer councilor. Well, for some of us, that’s not an option as we get even older. So, the Young Adult Retreat was born. There are over 30 of us that go to this weekend and I have known 99% of them since I was 12 years old. We have a bond unlike any bond that exists because we have seen each other puke, have nose bleeds, wash banana’s with soap and water in order to eat them, and cry. We have also watched so many like us pass from our disease.We have gone through break ups and marriages and divorces and cancer and remission and relapse and bone marrow transplants and… Well. EVERYTHING together.

These people know more about me than ALMOST anyone else knows about me. And you know, we see each other AT LEAST 5 days out of every year because of camp dinners and YAR. I talk to some of these people at least once a week and see a few times a month. The ones we ONLY see those 5 days are no less supportive than the ones we see outside of camp functions, either.
Since diagnosis I have had an even bigger outpouring of love and devotion and support from these people than anyone. My friend Amanda came and saw me almost immediately after I was diagnosed. Since then, Ive had cards and emails and texts and more visits from these people than I know what to do with.
Yes, there is something they know and understand about me that no one else does- because they also had cancer as children. That changes us. We are some weird people. But on another level, when you have been through cancer and survived it, there is this weird perspective… and I think you guys are probably gathering that in this blog… that needs to be shared.
I talked to Clifford, a friend from camp, yesterday, and while it was very serious and very support driven, there are very few other people that I can laugh with when it comes to discussing chemo and radiation. But we did. We laughed while talking about chemo and radiation. He kinda made fun of me for pointing out how bad it would suck if I lost my hair because it would make a huge mess (“Well, isn’t that some woman thinking if I’ve ever heard it…”) And I needed that…
I need all of them and for some reason I’m surprised by this? What the crap. They ARE my family. I’m surprised at myself for underestimating them when I KNOW how important they have always been in my life.
I needed Amanda to come over 2 days after diagnosis and poke my cancer and make a face! I needed Valarie to come over and remind me of this woman on an airplane that asked if I had a skiing accident and to share stories about her recent adventures. I needed Clifford to remind me that (dare I say it??) cancer CAN be funny. (I mean, one time Kevin told a story at camp about puking so hard that part of his esophagus came up. YOU HAVE NEVER SEEN 15 YEAR OLDS LAUGH SO HARD. I will never, ever forget that.)

So.
I’m the luckiest girl alive.
Even if, and maybe because… I had cancer when I was 12. And I have cancer now.