My CT scans (of chest, abdomen, and pelvis with contrast) are a radiation dosage of 30 mSv and a x-ray of the same area (chest, abdomen, and pelvis) is only 6 mSv.
This amount of radiation puts me at a moderate risk of developing cancer.
So you're checking for cancer with something that can give me cancer?? Ironic? It was something we questioned in the beginning. So, if the radiation from ONE scan put me at this "moderate risk"...and I get 3-4 a year? So....you're checking for cancer recurrence with a procedure that greatly increases my risks of cancer? Sounds intelligent, right?
Well, like I said, we questioned this. But with my type of cancer and the places of relapse, a CT scan would best show it. An x-ray wouldn't give us good enough results. So in the grand scheme of things, this is a risk we have to take to make sure if I would relapse, we'd actually be able to see it and treat it in time.
But that all has a dark cloud over it. Most of you reading this know me, so you know my story. You know a little bit about the cancer.
"we'd be able to see it and treat it"
That's blowing smoke up my ass. Doctors, medical journals, studies...they all say the same thing. FAT CHANCE!..but in more professional terms. There's no success with relapse. You can't "treat it" again. It's a one shot deal. As my not so nice radiation oncologist (picture an older, grayer Kevin Bacon but with Dr. House's 'tude) said "If it comes back, it will take your life." Comforting, right???
These are the thoughts inside my head the few days leading up to a scan and in those waiting period days. It makes the waiting game the cruelest game on the planet.
People always ask why I let the scan get to me. Why I worry. That's why. It's easy to tell me or anyone else to be positive. "All the last ones have been clear so why think this one won't." Simple. Yeah, for you telling me to do it. But not for the person in the situation...not for the person living that life. I obviously don't have good luck...I mean, I got this little bitch of a disease....this bastard cancer that only affects four in one million people. It's success rate isn't high at all.
It's MUCH easier for the one not getting the scan, the one who didn't have cancer, to sit back and not understand. Saying it and believing it are two entirely different things. You say to tell myself "Well, I'd just keep telling myself it's clear and it'd be fine." Well, when you're in this situation, you try that and get back to me with how that worked out.
We're human. It's natural to play the "what if" game. I do every 4-6 months when it's scan time.
I will admit this scan wasn't nearly as bad as any of the last. Usually, the weeks before a scan, something in my body doesn't feel right. I start to worry. "Uh oh. The cancer is back and that's why I feel all wonky." But this scan, no weird feelings! I felt 100% healthy.
But the week before, I started reading this book about a woman who had cancer. {Dumb idea, I know} She felt 100% fine and then BOOM! The big C-Word.
"Oh gosh. All those times I felt like crap and thought maybe. And didn't. Now, I feel good so what if it's the opposite." Insert internal freakout mode and sleepless nights.
So anyway, the day of the scan...
Mom and I head to Wash U (I promise you, from working at the CDC there and living there in 2006 plus all the crap in the years afterwards, I could drive there in my sleep.)
We walk in and I check-in. I'm sitting down, filling out my paperwork.
"Melanie Dickens" (Glad to see you all updated your information the other day during our phone call.)
I get up (cue stares and whispers "she's so young!")
Problem. Although all my insurance info was updated a few months ago after we got married, my doctors office never called Tricare to authorize the procedure. Freaking-fan-tastic. This should be fun.
So we had to sit there and wait. Wait for radiology to get ahold of someone in Tricare to authorize this CT scan.
As if I'm not all nerves already. Now I have to wait longer. She tells me it might take hours and it might not even happen today. Lady, it needs to. I have to go back to Florida on Monday....
After what seems like a lot of run arounds and TOO much time passing...
"Melanie Dickens" (although she now knows this isn't my name and has updated my info, she doesn't feel the need to use my real name.)
I walk up fearing her telling me that Tricare won't authorize my procedure.
"It's all taken care of! Go ahead and have a seat and they'll call you back."
Thank freaking goodness!!!
It's not too long before I'm taken back.
This time, I get to go straight to the IV room. (Normally I sit in the tiny waiting room to get my IV). Pam is there to put my IV in. She's been in that room for the past 3 years and puts my IV in every time.
She never remembers me.
Sometimes, I'm thankful. It makes me feel normal the way she introduces herself and tells me the same stories about her daughter or her husband or her dogs. She's not looking at me in that way that others do. The "oh you poor thing. Still coming here every few months for these scans." Pinning me as "the young girl with cancer."
I go with it. Pretend I've never seen her in my life. Allows me to feel normal. To act as if this place isn't my second home. Act naive as if I don't really understand what this all means...what it could mean. Pretend this isn't my normal life. This worry isn't a part of who I have become. I get to pretend to be normal. Even if I know I'm not, she doesn't know that.
Other times, I'm sad she doesn't recognize and remember me. It's sad because it means she sees THAT many people in here. That there's that many people she encounters fighting some sort of battle. It makes my heart heavy. There's so many of us that we're all just numbers on a piece of paper. Yet despite that, she's the happiest and nicest woman ever!
Once my IV is in, she wishes me well and sends me back the waiting room. It's so tiny. There is one couch and one chair next to each, with another couch across from them. It's so tiny that my knees practically touch the old man's across from me.
This is the part I hate. This waiting room is always full of old, old people. I'm sure you've met a few old people...they LOVE to talk. Most of the time, I don't mind. I love talking to the elderly and hearing their stories, answering their questions. But not here. I don't like it here. A young girl walks in and they stare at you with hawk eyes. They want to know your story. And they definitely aren't afraid to ask.
Today, I have one elderly man and two elderly women in the room with me. They all stare when I walk in. I sit down. Stare into my lap. 'Maybe if I don't make eye contact, they won't speak to me.' Wrong.
Old man says, "So, what brings you in. You look a little too young to be in here."
I decided to make it kind of light-hearted, hoping to ease my mind a little if I could laugh. Maybe ease their nerves too?
"That's the funny thing about cancer. It doesn't care how old you are."
Old woman next to me snorts and says, "Ain't that truth, sweetie."
Then the other woman asks, "Breast???"
(This entire time, their eyes have not left me.)
"No, Leiomyosarcoma." (thanks lady, I know I have no boobies but you have to assume it's from a mastectomy?! I'm just naturally flat, thanks! But it's okay...my Hubs claims to be a "Butt Man" anyway.)
Old Man: "Well, that's a new one! What's your prognosis?"
WHO ASKS THAT...HERE?! I just smiled and said "I'm in remission...at least I hope I still am."
They all drop their eyes. I think they sensed my tone and saw the tears well up in my eyes.
You moron! THIS SCAN will tell me my prognosis. Ugh.
Thankfully, the tech comes back and calls my name (along with Old Man).
She drops me off with a smile outside the exam room and says they'll be right with me.
I take my seat outside and wait. Again.
I wait for what seems like an hour but was probably only 10 minutes. All the while doctors, nurses, techs all walk by. Giving me that same sad look.....but smiling when we make eye contact. I wish I could get in their heads. How do they look at people like me all day long....knowing we're sitting out here to lay in some stupid machine that will tell us our fate??
Finally, she comes out to get me. I enter and sit on the table...bed...thingy. "You've been in here before. Didn't you just move here? Or make a big move? You just got married, didn't you?!"
I was actually happy to hear she remembered me. And it wasn't for my cancer. Dawn remembered ME...my life. Personal things about my life. We chatted a bit about the wedding and moving. She told me she was in the Air Force for about 15 years and was also an Army brat growing up (all of which I knew and remembered but I liked hearing her stories again.)
I complimented her on her memory and said "it's impressive considering I'm only here every few months and I'm sure you see a lot of people on a daily basis."
"Yeah, but you're easy to remember. You're probably the youngest person we get in here. And you're the first and only person we've ever seen with LMS in here." ....lucky me =/
(LMS = Leiomyosarcoma)
She then lays me down and puts a blanket over me. I know to pull my jeans down past my knees (metal from the button interferes), lift my legs over the brace, and prop my arms above my head before she even asks.
(I normally have to chug an entire cup of water but for some reason, I didn't have to today. Thank goodness. I hate water and it's always room temperature.)
She leaves the room. Awkward creepy computerized man comes on "Take a deep breath. Hold it." .....and I go through the machine, at a normal speed. "You may breathe." *exhale*
She comes back out, tells me she's administering the contrast. "Let me know if this burns or is painful. You know the drill". And I do.
She presses the buttons and the contrast enters. I feel it....it's cool as it enters my elbow-pit IV. Then my arm gets hot...then my face....then my neck...then my chest...then my crotch...and it feels like I'm peeing. (No joke. It gets so hot that it honestly makes you feel like you just peed your pants. Weirdest.Feeling.Ever. When you get this contrast, they even warn you, "It will make you feel like you're urinating, but don't worry, you aren't." I think this is something everyone should experience once in their life....just saying.)
She leaves. Normally the warm/hot feeling leaves as quickly as it came. But today, my throat is hot. And it starts to feel like it's closing. But I don't want to say anything. I want to get this over with and leave. I don't want to look like a wimp. Maybe it's NOT really hot and I'm just so anxious that it feels that way? Maybe my anxiety is making me hot? Maybe I'm not hot and it's just my anxiety causes my throat to close and I'm blaming the hot contrast? (all rapid thoughts in my head).
Then I hear the creepster again, "Take a deep breath. Hold it." And I slowly begin moving through the machine. It takes forever the second time. And even longer when you feel like someone is strangling you with gloved hands the temperature of the sun. "Don't move Melanie! Don't move!" I tell myself. I'm about to freak the eff out and start hyperventilating when Creepo says "You may breathe". Oh thank you, Jesus!
Dawn came back in and says "All done". I always pay close attention to how they talk to me when they re-enter the room. I know my scan popped up. I know a radiologist was in there. If anything was there, anything of a decent size, they would have been able to see it right then and there. And if they did, I assume she might act a little differently. But she didn't. Which I took as a good sign.
She told me to drinks lots of fluids, wished me well, and sent me on my way.
Then it was the waiting game. This time wasn't so bad. I was back home with my family and friends that I had missed SO much and it was Mizzou's Homecoming so it was really easy to not think about it all weekend.
Until Sunday night rolled around. Thankfully this time, I had Nick by my side. He held me that night in bed....well as much as he could with two dogs in bed with us.
The next morning we went back to the hospital. Went to the dreaded 7th floor....which will always be known as "Chemo Floor" even though it's the "Oncology Floor". Yes, my doctor is on this floor but the entire chemo ward is there. It brings back memories that make me sick to my stomach. It's hard to walk past it.
But in we go and I sign in.
After an HOUR we finally go back to a room.
We don't wait too long before some woman walks in. I don't even remember her name. She introduces herself as Dr. Adkin's partner. ['Where is my doctor?']
She blabs a bit about something and then tells me my scan looks great and it was all CLEAR!!!! {insert huge sigh}['Where is my doctor? Where is Toni? Why didn't THEY give me this great news?' (Toni is his nurse and she's my favorite!)]
This doctor talks about some stuff that I don't even remember because I was so happy to have a clear scan and because I was wondering where my team is...Dr. Adkins and Toni...whom I love and have trusted with my life the past 5+ years.
She lays me down and does a small physical. Pushing all over my belly. Checking for swollen nodes in my neck. Asking me if I have any weird pains or discomforts. Anything wrong. "Nope. Nothing." I felt 100% healthy.
She then explained that from here on out, we're moving to x-rays once a year. YAY! Less radiation!!!! The rate of recurrence at the sight has decreased enough that if I'd relapse, it'd most likely be in my lungs, in that case an x-ray of the chest would show it. Obviously, it's not guaranteed to be there if it does come back. And that's just if LMS comes back. I could get another type of cancer and that could be anywhere. But, we're just hoping we don't have to worry about anything anywhere!!
She also said that if at any time I feel that something isn't right or a pain, I can just call them and they'll order a CT scan to check it out or ease my mind.
We left super happy. But I was still REALLY bothered that I didn't get to see Dr. Adkins or Toni. You'd think they'd want to share it with us....they've been through this journey with us for the past 5 years. If this was Dr. Linehan, he'd definitely be there for it ;) I guess they just didn't care as much.
(Actually, when we tried to make our appointment next year on a Monday, they said Mondays are now for patients currently battling the disease so I'm guessing he was busy with more pressing patients. Which is understandable but still sad for me.)
Despite not seeing those two, it was a very good visit and I'm so happy that we now know I will officially make it to the 5 year mark and that's SUPER exciting!!!! It's a HUGE milestone.
CT scan #18....DONE!
That makes 14 clear ones!!!! (the other 4 were pre-surgery and treatment scans so I actually HAD cancer then)
I'm a beast!!!! Can't wait for November 20th to really celebrate!!
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