Thursday, February 28, 2013

Anticipation is dangerous

I think I am going to lose my mind. I'm still sick and every day I feel worse.  I'm trying SO hard to work my hours and be around my friends at work and do my job but it's getting harder and harder every day.  The worst part?  I have no explanation for it.  My cancer isn't making me sick.  I still have yet to feel better after falling ill.  I don't have answers for it.  I don't have medications I can take to feel better.  I have nothing.  And ... I've heard not a peep about my lung biopsy. 

Could the mysterious splotchy thing in my lung be the reason for my malaise and illness?  Is it Wegener's Granulomatosis for real?  The disease they initially went looking for in my first biopsy? I tested positive for it in my blood work but that wasn't enough for a diagnosis.  Is my splotch part of that?  It explains why I feel so horrible, why my cough won't go away and is just getting worse and worse.  Is it something else inside me that's making my body attack itself? Whatever is going on, this nonstop feeling sick, coughing, throwing up, dizzy spell feeling is driving me crazy.

And the waiting?  OMG, the waiting for answers about the biopsy is enough to make me crazy too.  I'll be cruising along just fine, thinking there's nothing to find in my lungs and then poof, the bad thoughts start creeping in and my mind is in a tailspin. 

Is the splotch another plasmacytoma?  Is it a different cancer?  Pre-cancer? Is it just plan ol' tissue?  Is it Wegener's? Is it infection?  Is it plain inflammation? Am I going to go on with radiation?  Do I have to start chemo?

I know I shouldn't worry and shouldn't think about it.  That's so easier said than done.  Especially when every one I talk to has the same question ... Any news? My family had an old saying we always relied on "No News is Good News".  But is it in this case?  Because until then my fate can go several different directions.  Once there is news, it will all be concrete and I'll know whether to actually freak out, or sigh with relief. 

How long is it supposed to take? It feels like this is too long.  How hard is it to look at the dang thing under a microscope?! I'll do it for them if they show me what I am supposed to be looking for.  At least then, I'll know what's going on and how to proceed with my life.

Anticipation is a BAD BAD THING!

Wednesday, February 27, 2013

If you don't know me ...

Now's the time to learn!!! For those stopping by who don't know me from work or just life, I figured I should introduce myself so my mindless ramblings and whiny ranting don't come off too weird. 
My name is Nicole, I go by Nikki to my friends.  One of my dear friends calls me NikkiNicole, hence the website name.  I am 33 years old.  I live in Wine Country, California.  It is one of the most beautiful places in the world to live.  Expensive as all hell, but beautiful and there's WINE!!! Yes, I love me some wine.  So that's something else about me.  I love wine tasting.  I"m realitively new to the wine experience so I love to go and taste different things and learn what I like.  I am married to my absolute best friend in the whole world.  We laugh SO much. I have two cats and a puppy dog who are my furbabies.  I live in a little house in the country.  I have excellent neighbors!! Both of my parents are deceased but I was blessed with a stepmother who is my mother in every explanation of the word. I am beyond grateful and lucky to have her in my life and I love her very much.  I have three brothers.  Yes, three.  One older, two younger.   I also had two dads.  It's how to excuse my sometimes boyish behavior ... I was kind of inundated with male behavior all my life. 

I love turtles, cows, otters, horses, tigers, bears ... OH MY.  OK, I love animals.  All of them.  I will find cuteness in even the most horrible looking creature.  I love them.  Sea Turtles kind of take the cake though.  I love black and white patterns.  LOVE THEM.  Seriously, I will buy something just because it has an attractive black and white pattern on it.  It's a sickness.  It pleases me.  If you find something like that paired with a bold primary color like red or yellow I am even more ecstatic.   Call me a dork, but that's how I roll. 

I love cop shows, I love the show COPS, I love all things law enforcement.  I love to read and will read A LOT.  I love the smell of new books but I also love to use my Kindle.  Or even my iPad.  I'm a nerd.  I love BATMAN and superheroes and Big Bang Theory and cartoons. I love My Little Pony even after all these years and not for the reasons they are popular now.  I love fountain sodas and chocolate.  I want to dress girly but damn jeans and a t-shirt are more comfortable! I am a reformed workaholic.  I used to work 7 days a week.  I say used to because I was forced to stop by the Cancer-monster and I'm going to keep it that way.  It's healthier.  I love my job.  How many people can say that?  I love my job. 

I love history.  I love looking at old photos and movies or shows about another era.  I love westerns. I love Victorian and Edwardian fashion.  I am a Downton Abbey FANATIC! I am addicted to shows on BBC.  I am a Doctor Who FANATIC or Whovian, if you will.   David Tennant is my favorite Doctor but I also have a major crush on Matt Smith.  I go crazy for Tom Hardy.  *sigh* British men!

Tombstone and Lawless are two of my absolute favorite movies of ALL time.  I can watch them over and over and over and over.  I have read about the real John "Doc" Holliday because of Val Kilmer's exceptional portrayal of him in Tombstone.  I love cemeteries because they are marble slices of history in of themselves.  When you walk through an old cemetery and see the ancient dates chisled in stone, doesn't your mind wander to what it was they saw in their lifetime? Mine does.  I love it.  Not to mention how creepy the tombstones look. 

I love all things haunted, or presumably haunted.  Old houses, buildings anything.  I love creepy and scary and ghouly.  I love gothic art, gothic pieces.  I don't want to dress gothic but sometimes I like pieces of the things they wear.   I'd decorate my entire house like an old gothic mansion if I could ... and I don't even have to live in a mansion to do it!!!

I am morbid and have a weird fascination with death.  Crime scene photos don't bother me.  Yes, even the real ones.  Dead bodies don't bother me.  I'm more curious.  I look at them like ... where did they go?  How can we be here one minute and gone the next?

I'm weird.  I'm an anamoly. I don't truly think I can be labeled or defined as any one thing.  People are always commenting on my smile.  Not that it's pretty or whatever, just that it's always there.  Every doctor has made a comment about me smiling.  It's just what I do. Hence the blog title.  I like to smile.  I feel like it's positive and will spread and make others smile and when you smile you really can't feel sad, right?

So that's kind of me ... sort of.  I'm sure there's a million other things that are a part of my strange make up but ... this is the gist and will make things more clear if I talk about something non-stop one day.  I could spend an entire day watching Doctor Who reruns and you'll get blogs about the antics of my favorite Time Lord in action.  I can't promise anything ... because some things have to be kept a mystery. 

Side Effects, Say WHAT?

I woke up this morning in a bad way. Not horrifically so, but not the happy-go-lucky person I was yesterday.  I knew there were some things I needed to get done before work so after procrastinating my rise from the sheets, I somehow got up and got moving.  I tossed in laundry, made the bed and paid bills.  Ugh bills.  Why can't I call them all and say "Hey I've got cancer can you stop billing me for two months or so?"  If only it were that easy.   Anyway ... I paid them.  The beginning of the month is crappy because, you know, it's rent and crap.

So the bills were paid, laundry is tumbling and spinning.  I felt weak and lopsided (it felt like the world was leaning to the left) so I plopped down on my couch and decided to actually read the book that was given to me about my upcoming treatment.  Yes, I've spoken with them and they've told me, but I wanted to read the facts.  Maybe I'd come up with a question or two to ask them instead of staring at them blankly when they say "Do you have any questions?"

I remember the nurse saying I wasn't going to be able to eat sugar.  So, I figured I'd be two months into a painful sugar cleanse when this was all done.  However, she meant no sugary snacks.  No candy.  No soda.  That kind of sugar.   Still, it will be sort of a good start.  It was recommended that I drink milkshakes and smoothies to help with my massive sore throat.  It also directed me to eat HIGH calorie foods.  To make cream soups with milk instead of water, to add melted cheese and butter to my foods, to eat whatever I can with lots of dense calories in it because my body is going to need it.

It also said I'm not going to have much of an appetite but I need to eat whenever I can, and to load up on proteins, milk, eggs, and beans.  Dan is going to love living with me loaded up on beans, let me tell ya.   I love melted cheese, I love butter.  I love meat.  At least whenever I get hungry, my options are something that I'm going to enjoy ... if I can taste them.

So my side effects ... yea ... not exactly what I had imagined all along.  I guess I am glad I bowed to my doctors will and scheduled myself off for treatment.  Let's start at the top shall we?

Severe sore throat, swollen gums, tooth pain (compared to having one's braces tightened and i HATED that back in high school so ... yay, not), loss of taste, loss of voice, headache, extreme fatigue, thickened saliva, nausea, headache, blistered skin, red skin, .... to name a few.   Sounds like a party huh?  Given my amount of whining I've done recently I should apologize in advance to anyone that is going to be around me while experiencing said side effects.  I apologize for being a whiny ass, please forgive me. 

There's the slim shred of hope that I have that maybe I'll be one of the lucky ones and have NO side effects! I keep thinking that in my head.  They called it medium dose radiation so maybe I'll be good to go.  Although, the dentist told me that my dosage is just under the amount called "high dose".  Just under?!  Ugh.  Well, I have to think positive.  Maybe I'll be a rock star and sail through it with minor symptoms. 

Then, 8 weeks from now I'll be back in the saddle, working normally, working out again, weating right and living a good, wonderful, LONG life.  That's my plan anyway.  I won't let a little thing like cancer get in the way.  Be gone cancer ... I took away your festering warm little gland ... now the rest of you need to vacate the premises. 

Oh ... still no word on the lung biopsy.  Any day now ... But don't worry.  That's gonna be all clear too.  I only have one long hurdle to jump over.  The lung is NOT going to bring anything else to the table.  

I hope ....

Tuesday, February 26, 2013

A simple taste of normal

Work.  Sometimes, it is the thing that is dreaded the most.  Mondays.  There's even a condition!  "Someone has a case of the Mondays ...." People dread it.  People cry, mope, pout, drag their feet, talk about needing the GIANT coffee just to get themselves going in the morning to face their day.  I, however, happen to have a very interesting, exciting, fun, great job. It is a job in which I have even volunteered to give up my entire weekend to do.  Granted, I make beaucoup bucks when I come here on my day off and that makes it quite alluring to be here.  But, that aside, my job is pretty awesome.  I get to be in the "know" about things.  I feel a part of a bigger picture of the greater good. 

Work has been a joy for me in my life.  At least, my adult life.  What kid wants to be at work.  At times, it's been an escape for me from a home life I didn't want.  Others, it's been a lifesaver, allowing me to work a million hours when I needed to make extra money to cover my husband being between projects.  I have been a part of some scary things and I have been a part of some awesome things.

For me, work is a huge part of my life.  A lot of the people I consider my friends are here.  I have had some crazy, funny laughs while on duty here at work.  It was weird to actually say "I miss work".  I did.  I missed working.  It's something that I do SO much that when it wasn't there I wasn't quite sure what to do with myself.

However, for the next two weeks, I get to work!  I get to put the headset back on, sit at my desk in front of way too many computer screens than a person should be in front of, and I get to answer phones, get yelled at, dispatch deputies, get groaned at by them and be with all the people who have grown to become an everyday part of my life.  Not being here made me feel like I wasn't a part of what I love.  I've been a huge law enforcement fan, a huge cop show fanatic since I can remember, and now I didn't have that.  I wasn't a part of the things I was hearing our department involved in.  I wasn't there for all the backstory, my little inside information that I always had.   It felt weird.  It felt like the world was going on and I wasn't going on with it.

But for now, I'll get to return to normal life.  I'll get to taste what it is like to be me again, to savor the things I may have taken for grated.  Before long, I'll be back in the world that has become the sort-of normal. I'll be in my sweats, hanging out at home, trying to feel OK.  I'll be with my pooch every day again.  I know he enjoys that. I am making a list of movies I want to watch that my husband doesn't care to see so I can watch them while he's working.  I am going to go on the hunt for regular coloring books and crayons because I have this weird desire to "color" things.  I'll be writing here, and possibly trying to write my fiction stuff again. 

Until then, I'm gonna feel normal for awhile.  Or pretend to physically feel normal while doing normal things.  All I have to do is smile, right?  Smiling makes everyone think I feel fantastic.  So, the smile will stay put. 

ahhhhh ... to feel normal again.

Monday, February 25, 2013

Needle meets Lung, A Love Story

Today was the dreaded lung biopsy.  Naturally, last nights sleep wasn't the greatest.   It was riddled with out of this world nightmares and then my reaction to said nightmares woke the puppy who then was unsettled.  I took Loki out to pee and then we slept in the living room.  Of course, sleeping on the couch means Gracie (girl cat) was on my chest and JD (boy cat) was on top of my head.  That doesn't exactly make for comfortable sleeping.  

Checking in at the hospital and getting all situated went smoothly.  The IV placing?  Not so much.  The "little prick" hurt ... and then she lost the vein.  *sigh* The nurse grabbed someone else to try.  A blood pressure cuff was used as a tourniquet, and a warm pad was placed over where the veins are to try and bring them back to the surface.  She also said "little prick" and there was more pain.  Considering the IV is my least favorite part, I was not enjoying this experience already which didn't exactly bode well for the whole day.  I could feel the nerves starting their pee pee dance.  My entire body began to shake.  The second nurse decided to try my other arm and they moved the regular blood pressure cuff over and ... poof, IV slipped right into my left arm.  I sort of recall suggesting that arm in the first place but, they'd already hooked me up to the monitor w/ that arm so it was pushed aside. 

OK, IV is in and placed and ... now we move to another room to sort of wait around for my turn.  My posse of people cram themselves into the teeny room.  Mom, Aunt, Cody, and Dan.  Four is enough to be a posse right?  So we all hang out and chat, funny stories, picking on me, picking on everyone.  It doesn't exactly quell the trembling dance of terror my nerves are doing.  

The last biopsy I had been subjected to was absolutely awful.  And, in my very descriptive mind, I was painting this experience as equally awful and dreading it with ever fiber of my being.  Honestly, I was hoping they would slide me into the CT machine to place where the spot was and it would be gone.  Then, they could just unhook everything and send me home.   

My doctor came in, another Dr. D., and he did really put my mind at ease.  He explained that the bone marrow biopsy is the most painful biopsy that can be done.  He explained that it wouldn't be nearly as bad, but said I didn't have to believe him and told me that he would be asking me how it was at the end and I could tell him if he was wrong or not.  I really liked the doctor.  

Then, it was time.  Ugh.  Everyone left and headed to the cafeteria.  I was wheeled into the CT room.  Dan walked with me to that point and for some reason it was really hard to see him standing outside as the door closed.  I don't know why.  I guess things felt very "real" at that point.  Real in the sense of what is going on.   

The room was like any other CT room I've been in.  I laid face down on the table and was thankfully, covered with a warm blanket from the waist down.  I was not wearing cute underwear and, to be honest, my backside is not a pretty picture in of itself so ... I'm sure everyone was glad it was covered!  I was reattached to the machines in that room so they could monitor everything about me.  The doctor came over and put stickers and markings on my back and then it was drug time.   Fentanyl and Versed.  I could feel it in my  head.  But, would I feel it in my lung?

I felt the sting of the local anesthetic and the burn.  And then OW! Yes, I said OW!  Because I felt it.  But, Dr. D2 stopped and asked for more medicines for me.  Woo hoo, bring on more Fentanyl.   Moments later, I heard some snipping and was preparing myself for the procedure to start again.  But, it was over.  I felt nothing!!!!!! I couldn't believe that it was done.  

That was a much better experience by far.  I was being such a baby beforehand.  However, the not knowing and anticipation was the worst part.   Why do I get inside my head with these things?  Sometimes I wish I could shut it off and wait and see.  

Unfortunately, I'm in my head too much.  I worry about things when I shouldn't.  I build things up in my mind to be far worse than they actually are.  Like, in the very beginning, when the C word was being tossed around.  I vehemently denied it in my head.  Cancer is BAD!  My experiences with cancer have not been good ones.  My cancer experiences have almost always resulted in someone I love being taken away.  But, I got in my head and made this bad for me.  

It isn't bad.  Just like today wasn't bad.  It's all going to be a breeze from here, right?  Yep.  Sure, I'll feel downright shitty for several weeks.  But, I'll park myself on the couch with Netflix, Amazon, my DVR, the iPhone, iPad, coloring books (if I can find them), crayons, and ride this out.  The radioactive lasers will kill every bad cell that decided to hang around after closing time and I'll be completely cancer free.

And for those wondering, I have no idea when I'll get the results of today's biopsy.  I am hoping before the end of the week.  That would be nice. 

Well, I'm off to fill out paperwork for my time off requests for radiation.  Paperwork, yay.  But, I am SO lucky to have this option.  

Goodnight ... 

Sunday, February 24, 2013

Admittance is the first step.

Admittance is the first step of 12 when dealing with a problem whether it be addiction or any other number of things.  It's also the first step in trying to fight back against something that has been known to kill people in other forms.  


When I got the call about my mass/lump/oma and went to the doctor to talk with him while he jammed a giant screwdriver into the back of my pelvis and suck out my marrow ... he talked about the stupid gland and doing radiation. In my mind, they took the thing out, it was bad, let's zap you and move on.   It was how I explained it to whoever asked me.  I had this, but they took it out, my marrow test is OK, hey how's life?  I sidestepped the bigger issue.  Luckily, I have a rockin' doctor who keeps bringing that issue back to me, whenever I talk to him.  My disease.  My cancer.  When I ask him questions about my diet, can I have a glass of wine, can I exercise ... he answers "Cancer patients, like you, etc etc" 

So, in my first entry and in an email to some of my friends I started to say it.  I have cancer.  Albeit, cancer I have the upper hand with.  Cancer that hasn't been able to stretch it's legs.  Cancer who may have brought luggage but that luggage was lost in the airport of my body.  Cancer that will not be sticking around or ... even getting anywhere near to taking my life.  In the grand scheme of cancer diagnosis' ... I'm damn lucky. 

It was in admitting this, I realized that I need to listen to my team of doctors and nurses.  (I have a team!!! I feel like a celebrities who have a team to help them.  Except, mine don't do hair, makeup and dress me.  These are keeping me alive!) I need to listen to them when they say I shouldn't work, I should rest. I am waving the white flag and laying myself in the hands of Dr. Z, Dr. L, Nurse Annabelle and Jeanette, Dr. D, and possibly the other Dr. Z.  I will do as they ask of me, eat how I am supposed to, rest as I am supposed to, and remember that after I am off for this time ... I will be back at work, cancer free, and free to live my life ... for the rest of my life. 

I admit it.  I have cancer.  I admit it.  I am not entirely in control here.  I admit it.  I need their help.  I admit it.  I am a cancer patient.  And I admit it, wholeheartedly, I am going to kick cancer's ass, and kick it hard.  

Saturday, February 23, 2013

The C Word

"You have pneumonia."
Whew, it wasn't  appendicitis.  I was happy. Well, as happy as one can be being told they have pneumonia after their mother died from exactly that.  I took my antibiotics, my note forbidding me to work and headed home to rest as I was told. Pneumonia wasn't going to kill me.  Unfortunately, that simple sentence launched me into a whirlwind of doctors visits in which I saw 8 different specialists, I have since had 6 chest X-rays, 4 contrast CT scans, a PET scan, an MRI (under very heavy medication to keep me from having my first ever panic attack), a surgical gland removal, a bone marrow biopsy, a bout of the flu and now on Monday, a lung biopsy. Whew! That's a lot. I think I remembered it all.
My general doctor then tells me "I don't think you ever had pneumonia." Oh really?!  Doctors, they know ... But they don't know ... You know?
The night of my initial pneumonia diagnosis they stated I had a little spot in my lung. Over my diagnosis research, and all my X-rays and scans, that little lump remained. As did the large lump in my neck which they just kept saying was a swollen salivary gland. "It happens ... It will go down on its own."   Only, it didn't, ever. It only annoyed the crap out of me.
One of my many blood tests stated I had an autoimmune problem. So the docs started trying to name which problem I had. One of the specialists needed a tissue biopsy to confirm one of the conditions so finally, the large lump in my neck was coming out!! Answers were on the horizon!!!
Once home, resting with a pretty cool neck scar, my hubby and I started talking about dealing with said autoimmune issue, etc.. We'd be cleaning up our diet, being careful to stay healthy, yadda yadda.  It never even occurred that we would get different news. When I was having my neck stitches removed, the surgeon said "the biopsy results aren't back yet. There were a lot of plasma cells on it so it had to be sent to another lab for the final report." Ok, no biggie.
Ha. Wrong.
Later that day, ENT surgeon Dr. T. called with the final report.  My mind sort of went fuzzy the moment he started talking. Plasmacytoma, Dr. Z (oncologist) will be calling you later, blah blah. My mind stopped when I heard "Oma". Things that end with "Oma" in the medical community aren't ever a good thing!! But, I'd wait til I actually talked to Dr. Z.
Dr. Z. called and I went into even more of a tailspin. Plasmacytoma, multiple myeloma, bone marrow biopsy, lets do it Monday, its not good to have this at your age, bone marrow transplant, ....AHHHH! This isn't what they went in looking for!
My bone marrow biopsy was scheduled immediately for that Monday. I knew it was going to hurt. Holy CRAP! That sucked. That was horrible. There aren't words. Painkillers eased it but DAMN! And, the residual pain in my back. Not cool. Not to mention I now had a high fever and the doctor on the phone said "flu!". Really?! WTF is going on here?!
Anyway, long story short ... Bone marrow shows rare plasma cells but, not enough to be multiple myeloma. So I just have the plasmacytoma. Well, I don't anymore. But, they need to radiate the shit out of the area it was to make sure it's all gone.
My doctor does keep have to remind me ... It is cancer. Cancer! The new C word. I have cancer. I also have to say it. But, I can also say, I won't have it for long!!!!!
I'm set for my radiation as long as this upcoming biopsy is OK. And, I'm gonna keep thinking that it will all be OK. Because it will.
I will confess, I'm scared shitless of this lung biopsy. Shitless. The last biopsy made me want to be unconscious. I don't want anymore pain. I want to be on the road to recovery!  Yes, radiation has its own pain in the neck collection of side effects that will cause me to miss even MORE work, but, it's pushing me down the road to having a normal life again.
Dr. Z. says I will have to have blood work forever to make sure those little rogue plasma cells don't decide that my bone marrow is a warm and inviting home and decided to be fruitful and multiply.  I have been told it shouldn't come back until I'm way older, and that's what I'm going to go with.
Of course, ... This is all up in the air ... Until after Monday!