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.

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I can’t think of anything funny or clever to name this blog entry

You guys! I get new boobs in January! How exciting is that?!

Okay, actually… I have an MRI in October and if all is well THEN I get new Boobs in January.

My surgeon is still really nervous about me not having radiation. REALLY nervous.

Lets hope he’s just nervous for the heck of it and I’m actually okay and there were no rogue cells left in my chest.

Also, here is the video of us getting our wish. I talk excessively and Im sorry for that. Also, I am holding my phone at one point in the video. I’ve made sure to tell everyone this: I was not being rude. They wanted to see my furbaby so I was finding a good photo!

Click me for the video

Lots of stuff is happening between now and my surgery!

September is ALWAYS a busy month for me, as it is Childhood Cancer Awareness month, but this year I also have wedding showers and things of the sort. Then of course, October will be busy because I’m freakin’ getting married! Then there is the honeymoon and hopefully a camp beach trip. After that, Ill have about 2 seconds to rest before Halloween, Thanksgiving and Christmas.. and of course, doctors visits will be scattered about in there. And lets not forget about life. Regular, everyday life. Dishes and laundry and bills and work and grocery shopping and work and a smidgen of a social life.

In other words, Ill have new boobs before I even realize what has happened.

Then maybe life will slow down a bit? maybe?

So, tell me about your implants. I have no idea how to research this.

Also, Im 99% sure they still want to move part of my latissimus dorsi around to help out the whole process since I did not have expanders and I don’t have enough tummy for a TRAM.

If you had that, by all means… tell me all about it! ALL about it!

Silicone

The thing about my current fake boob is this:

I am confused about cleaning it.

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

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

Also.

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

Do they even make them with nipples?

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

Anyway, Im off to wash my fake boob.

 

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

What’s Your Pain Level

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

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

A very serious problem.

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

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

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

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

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

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

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

Completely logical explanation.

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

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

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

Because dang it! It hurts!

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

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

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

Bald on the Inside

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

Well. Not so much.

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

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

But breast cancer is occasionally a part of these worries.

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

It was a beautiful moment, really.

But on the drive home my brain went haywire.

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

Well.

It’d be a memory…

But really. Sometimes it’s just hilarious.

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

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

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

But really, I know I’ve got it easy.

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

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

98

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

I know we are all bald on the inside.

July

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

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

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

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Other things Ill do this month?

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

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

Here are a few photos from my visit!

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makin this gown look good!

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

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

I like big butts and I cannot lie?

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

But listen, it’s new for me!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.