Friday, March 29, 2013

Thank goodness it's Friday

Yay, Friday.  No treatment for the next two days.  I can maintain a level of energy for an entire day instead of knowing that once I go to the cancer center it will be a steady downward spiral!  Alas, today hasn't been a great day.  

I woke up at 430 this morning (after not getting to sleep til after midnight) with my chest feeling like it was being crushed by an invisible elephant.  My shoulder was in horrific agony.  I laid there contemplating whether or not this was the type of chest pain to be taken more seriously than others.  But, I didn't feel it was THAT bad.  So, I got up and took Loki out as he was starting to sub-boof (when he barks without opening his mouth).  I laid back down and couldn't go back to sleep.  I couldn't get comfortable now.  It felt like my entire rib cage literally had been stepped on and wasn't springing back to it's regular oval shape. 

The rest of today has been pretty much the same.  My chest feels tight, I can't take deep breaths, and everything aches.  I am hoping it's just because I was sleeping wrong or something.  But, it's been a rough day.  I went to my appointment and got to go in early since they were ahead of schedule.  I came home, had a little lunch and then ... everything went downhill.  My lovely fever spiked higher than normal and I was down for the count.  I took an hour and a half nap (even with the fatigue, I don't nap.  Still, I nap when I'm sick) and haven't been able to do anything.  

I wrote this morning.  Usually I write in the afternoon but I was on the couch so I thought I'd give it a shot.  I think I did alright.  I didn't try to delete it! I wrote only 3619 words but it was something.  I actually made progress after having writers' block yesterday and that makes me happy.  I feel like I got over a hurdle. 

I still do feel like I'm being flattened slowly.  I'm coughing more today than I have been recently, my ears still hurt.   But, there's nothing wrong with me right?  At least, that's what the pulmonologist that I can't stand says.  My rheumatologist emailed me that he wants to see me in the office next week because he's worried things aren't getting better.  I also have to see the ENT guy about the mysterious pressure in my ears and face.  

My poor Loki has a mild allergy to the ol' fleas.  He got a flea, it bit him on the butt and now he won't stop chewing his butt.  He's been regular on his flea treatments and hasn't had any other issues.  So, I gave him some benadryl today to see if it will help and put some neosporin on his chewed spot.   So far he hasn't scratched or gone after himself anymore.  Good, I think I figured out how to fix him.  That makes me happy because I'd hate for him t be miserable and itchy, and I had a German Shepherd that was allergic to fleas.  Unfortunately, this was before all that topical treatement was all the rage.  She chewed up her entire back ... it was sad.  I won't let that happen to my little Loki-Poki.  

On a positive note, I am now done with 3 weeks of my 5 weeks of radiation!!! I only have two weeks to go! Then, I'll need to shake off all this crud and get to return to the normal life that I know so well.  Oh it will be fantastic to feel like a normal person again.  That's something to look forward to right? 

Happy Friday everyone.  I hope you enjoy your weekend if you have it off, and enjoy your work days if you work shift work like I do.  (except I am the lucky one that has weekends off).  It's supposed to rain this weekend so ... I hope your plans include staying indoors!!  There's nothing better than snuggling up on a rainy day anyway! 

Thursday, March 28, 2013

Hello, Writer's Block, my Old Friend

The hours after radiation, where I become a sloth on the couch, are the times I usually sit down and write.  I can't move from the couch, so why not?  Well, it's that time and here I sit on the couch ... and I can't write.  I'm stuck.  I'm starting to think it sounds stupid, it's a dumb concept and that I should just delete it and start over.  

This is why I'm not even opening the Word document right now.  I don't want to do anything irrational.  It's better if I just leave it closed and work through these feelings on my own.  This is a step in the right direction, right? 

I put a Turkey Spinach lasagna from Costco in the oven a little bit ago.  It's not gluten-free, but I'm not totally back to that yet and it was easy to make.  I'm trying to focus on easy to make, cheap meals at the moment.  Remember the part about my income being shrunk?  Yea.  This is all part of the adjustment.  I can get more creative when I have a little more disposable income.  I know everyone says I should cook at home but ... when you are learning still, sometimes things don't work and you have to start over or do something else.  I'm not financially in a spot where I can just throw things out and start over.  I'm trying to be frugal here.  

Today's radiation sucked.  It's a painless procedure but, my body has decided that it's going to act up today.  Like, the constant dizzy spells.  It happened a couple times before I went, and then while I was sitting in the parking lot of the Cancer Center, it felt like I was sitting at an odd angle.  Has anyone ever had this before?  I didn't feel like I was sitting straight up, like everything was tilted.  I got on the table, got all strapped in and then ... everything started to spin.  It felt like I was turning on a pole.  I couldn't open my eyes.  I couldn't make it stop and I couldn't do anything because I'm not supposed to move.  

The nurse was removing my mask and asked if I was OK because my face was totally white.  I explained that I'd been having dizzy spells but that it was OK.  I met with the nurse (the usual Thursday routine) and even she was confused at the dizzy spells. I was feeling alright when I left so I headed over to Oliver's to get some chicken thighs for tomorrows crock pot dinner.  I felt that tilted feeling again when inside the store. 

As I left, I lost all my energy.  Everything was gone and it took every ounce of concentration and umph to walk to the car, to drive back home and to walk into the house.  Now, I'm waiting for the timer to go off in the kitchen, and I'm existing on the couch.  Tonight Dan has class so it will just be me and the fur-children hanging out.  JD and Loki have been playing non-stop.  I keep a close eye on his body language.  I know when he's thrashing his tail around he's not happy but ... he hasn't been. He doesn't even give the dog a full on swat, more like a half assed swing of his paw.  They are finally starting to be friends and I love it.  It also gives Loki a chance to run around and get some of his endless puppy energy out.  

It's raining today so he can't go run around outside.  Not that he would mind, he loves to go stand in the rain and look up at the sky.  Unfortunately, I don't want to hang out in the rain so ... we stay inside.  Sorry buddy.  

Well, I'm gonna go be a lump on the couch.  And no ... I'm not going to try and write.  I'll let writer's block be around me for the moment.  Like I said earlier, I'll end up deleting it or something and then I'd be pissed!!! 

I hope everyone had a great Thursday!!! 

Wednesday, March 27, 2013

Projects Schmojects

Having something to do keeps my mind off how I am feeling.  At least, that is what I have noticed today.  I've been working on getting some paperwork together and thankfully, most of it just involved me sitting at my computer, pulling something up and hitting print.  I did have to get up a couple times and walk into the other room but, I was only walking a short distance, thank goodness. 

I had to go to Kaiser today for another chest x-ray, and another thyroid test.  Oops, it had been a month since I did my last thyroid panel.  I am supposed to go every two weeks.  I just don't go up there.  And, I didn't feel the need to go up there for one blood test.  Yes, I know, it's bad.  Oh shoot, I need to email her and let her know that it may look different because of the radiation treatment.  One of the side effects is slowing my thyroid temporarily.  Anyway, I timed my trip to the lab horribly.  The line for x-ray was HUGE.  The lab line next door was short so I thought I would check in there first.  I did and then hopped back in the long ass line for x-ray.  I was next in line to check in ... and the lady in front of me was asking 2001 questions.  And then, the lab called me in.  DAMNIT!
So I got out of line and ran over to get poked.  When I came out, there was another loooooooong line at x-ray.  Oh well.  As I stepped back in line, my cellphone rang, it was Dan.  I stepped out of line and answered it.  He rattled off a ton of questions about the house we like in the neighborhood that's for sale, etc.  I explained I'd have to call him back. 

I got back in line again and this time made it to the counter!  The lady explained there was a 45 min wait.  I looked at the time, figured if it wasn't exactly 45 mins I would be fine since I had to get back down to Rohnert Park for my zapping.  Then, I sat down and prayed that this wouldn't take longer than 45 mins. It didn't, thank goodness. 

However, driving back to Rohnert Park, I started to feel very bad.  I went in and got filled with the gamma rays (still not a superhero) and headed to the store to get an onion for my dinner I was making.  I feel shaky, like I can't control anything of my limbs.  When I am standing up, I feel like I am going to fall over.  I am hoping that I can muster up energy to make dinner.  Don't worry, it's something so simple.  Paleo Spaghetti.  It's one pan, it takes like 20 minutes, simple.  Dan thankfully won't be here til about 7 so it gives me time to muster up some more energy. 

I haven't heard from the doctors about the x-ray.  She said she'd get back to me today.  Maybe she doesn't have it yet since they were so busy today.  I don't know.  I'd like to know if the nodule is still there.  I'm sure she will say it's smaller again.  She said that before, and then the cancer doc said "You can't tell if it's any smaller in an x-ray, only in a CT scan".  Honestly, do these doctors even know what they are talking about?

The heavy sadness weighing on me today is really hard to shake off.  There is no explanation for what's going on aside from radiation side effects.  I HAD an answer for almost a month, and now I don't.  How is that possible?  I feel like there's no end in sight for how I feel.  I was starting to think that there was an end in sight. I'd take this next round of meds, put this thing to sleep and get back to living.  Now?  I have no idea when I'll feel better because THEY DON'T KNOW WHAT IS WRONG?!

I wish they'd admit me, and run EVERY test they can think of.  Every blood test, spirometry, lung function, liver function, kidney function, listen to my heart for 24 hours so they can see it skipping at night.  Take my temperature and see the daily low grade fever.  But, they won't.  I wouldn't be able to be admitted til April anyway because of radiation but still ... I just want a freaking answer. 

I hope everyone had a wonderful Wednesday.  It's payday, my non-working paycheck was pitiful, but I am thankful to have it.  I luckily can wait til next week to pay the bills that are due and have soe of Dan's checks at my disposal.  I am trying not to think about money because I don't want to feel stressed.  

Is it May yet?  I need to get back to work.  I need to feel like I am bringing in money and that I able to pay my bills!!! 

Anyway, have a wonderful evening everyone. 

Tuesday, March 26, 2013

Someone please tell me ...

What is WRONG with me? 

A preliminary report came back from Stanford.  My radiation oncologist mentioned part of it to me so I came home and emailed my rheumatologist.  He wrote back that he was going to have the pulmonologist call me.  She called, said she had to call Stanford for some explanation of their report.  She went on about all these conditions, etc.  ANd, told me to stop taking prednisone.  I'm sorry, what?  The lesser does makes me feel worse, I was feeling better on the higher dose and now you want me to stop because you say it's not working? 

I emailed my rheumatologist again, asking him if I should, in fact, stop the prednisone.  Last I was told I couldn't just stop taking it cold turkey because it will make my adrenal glands a bit wonky and I'll be sick.  Oy vey.  What the frick is going on?  So is it not Wegener's?  Is it something else?  What the hell!?  I feel like I am back to square one, not having any idea why I feel so horrible.  

I honestly want to cry.  I don't know what's wrong with me, I can't seem to feel better.  I've been coughing for almost 4 months.  I've never had a cough this long.  The sinus pain is back, my ears hurt, everything from last year with the fun addition of the crappy cough.  I am mad as hell, fed up with feeling crappy, pissed off that I thought we had some answer and now we don't have an answer at all??

If I get to taper off prednisone ... fine, I will.  I desperately want to eat less.  But, I felt better when it was a higher dose. I didn't know it at the time but now I do!  I was doing better than I am now.  

Seriously, I don't even know what else to say right now.  I'm angry, confused, puzzled, ... this is my health.  If it is Wegener's and I don't treat it ... it could be bad.  If it's not, GREAT!  I don't want to have a lifelong, life-threatening autoimmune disease.  I am sure there is a better alternative to that.  But, I don't see why I would still be this sick for this long with no answers.  Everything lined up for Wegener's.  My ANCA blood test, the symptoms, the granulomas in my lungs.  OMG this is all so frustrating.  I just want to scream!!! 

I'm still waiting to hear back from the doctor.  I hope to hear from him before I'm supposed to take my next dose of prednisone. I usually take it around 10am so ... there's still a chance he can email me in the morning.  

I even only wrote 1000 words today because I just don't even know anything right now.  I feel like I'm in yet another holding pattern, still with no answers, still with no end in sight.  

I quit.  I tell you.  I quit.  

Monday, March 25, 2013

What was I supposed to do again?

I keep forgetting things.  I told myself earlier that I was going to call Stanford and UCSF and see what it would cost to have a consultation with a vasculitis specialist down there. My doctor clearly doesn't work with this disease all that much.  He may have a patient or two, but he doesn't seem at all concerned with things that he should be concerned with. I don't know.  I lowered my steroids and the symptoms came roaring back worse than ever.  They were never completely gone to begin with and now they are worse.  I feel like I took a giant step backwards in how I feel.  I know I can't do anything to stop my immune system for three more weeks.  I know this, and I am trying to be patient.  I would feel better waiting if my doctor seemed to be more worried. 

But, like I said, I was going to call them when I got back from my treatment.  But, when I got back, I started writing and didn't call them.  Now it's too late to call them.  Tomorrow I have to call down there.  Something is wrong, and I want to know that I have the best people on my side caring for me.  Kaiser has been great that everything is all tied together.  My original doctor, my primary care physician, could be responsible for saving my life.  She tested me for autoimmune diseases fairly quickly into all this.  Others who have this condition haven't been so lucky.  So, I'll have to thank her once everything is finally taken care of.  If I can remember to do that.  I can't seem to remember to make a phone call when I need to. 

I need to go to Costco and Safeway.  I have no ingredients for my smoothie in the morning!  I want my morning smoothie, damnit.  I didn't get to have one today.  APparently, I put the clear plastic lining from my yogurt into the blender.  Yea, I got a mouthful of plastic while trying to drink it today.  That was quite the ol' shocker.  I couldn't drink it after that.  However, Monica saved me.  She brought me yummy soft treats!! Mmmmmm, donut holes.  I am so happy I got to sit and talk with her too.  I just wish my dog was a little better behaved.  He's too enamored with her.  Seriously, he's in love. 

My ability to do things gets smaller and smaller every day.  I was able to do one load of laundry today.  But, it's something.  It lifts my spirits to be able to do something.  Laundry is easy too, just throw it in.  However, I don't want to go to the store at all.  I don't know if Dan will have time to go get the stuff for me.  It's a small list, easy to manage.  I don't ask for much!  And, hes actually home right now and not busy.  Well, at the moment he's with the neighbor and a beekeeper dealing with a swarm of bees that were found on one of their trees.  Tristan showed me the pictures, it looks like a giant black ball on the tree.  I thought it was a hive but it's all bees!!! Crazy!!  I can't even fathom walking over there so I'll live through their stories and the pictures.  

I emailed my doctor asking to raise the prednisone again.  I've had 4 bloody noses in three days.  My disease is a vasculitis condition, which means it involves inflammation of the blood vessels.  Right now, I have inflammation in my nasal blood vessels, obviously.  My sinus blood vessels are inflamed, hence the pain in my face.  My ears feel like I am standing on the top of a very tall mountain.  I can't get them to pop and the pressure is actually painful.   This all came back as soon as I lowered the dosage per his instructions. I guess it was helping a little after all.  So ... I guess I'll just keep eating everything in sight because I'm gonna have to raise the 'roids back up!!  But, I'll do it if it means I'm feeling better.  I will.

I wrote today.  5676 words today.  I'm up to 152 pages.  I wrote yesterday too but only 2500 words.  I was writing and then just got a little fed up with it.  But, it was something.  Every little bit helps.  It's a work in progress.  I can't force the creative process so ... when the mood is gone, it's gone and I let it go.  It's not my "job", it's supposed to be fun.  I still love writing.  I don't even hate the story yet.  Of course, I haven't done a re-write yet.  I better still love it then.  

I hope you have all had a good Monday.  


Sunday, March 24, 2013

Backwards

I'm gonna be honest up front so you can turn away if you want, this won't be an entry of sunshine and rainbows.  I'll try to muster up some positivity but, I can't make any promises.  Alas, I told myself I would post here everyday.  

My doctor suggested a lower dosage of my prednisone because it wasn't making a dent in how I was feeling.  He didn't want to keep me at such a high dose if it wasn't working.  A lower dose for longer would be more beneficial with a little less side effects.  I was eager to be less hungry!! I mean, seriously, I feel like I am STARVING all the time and can't get enough food.  If I was a petite tiny thing, it would be cute and endearing.  Instead I sort of feel like a hippo trying to hog all the food in the river.  Anyway ... I lowered my dosage as I was instructed yesterday morning.  I felt pretty horrible yesterday but didn't think it would have come back that quickly. 

Today is worse.  I am winded and tight chested when talking, I can't walk far without feeling like I'm going to collapse.  I get dizzy when I'm just sitting here.  It's like ... I'm watching TV and then wheeeeeeee the room is whizzing around me like a spinning top.  I'm coughing, my lungs just plain hurt all the time.  And that's just below the neck.  My face?  Holy crap.  My face hurts SO bad.  It's like my sinuses are full of pressure.  My eyes want to pop out of my head, my forehead feels like something is pressing it from the inside, my ears are full of pressure and one of them decided to stop hearing earlier for a good twenty minutes.  Then, when the hearing returned on the left, the loud ringing started on the right.  My front teeth feel like I was punched.  

My throat is scratchy and feels thick from the radiation.  There's also my rototilled gums on the left side from radiation.  

To sum up those last two paragraphs, I feel like a steaming pile of garbage, dog feces, and cow poop all raked into a neat lump of person.  

The upside?  Vee came and got me, bought sweet smelling things for me at the mall and took me to her house for dinner.  I got to have meatloaf and mashed potatoes.  It's one of my favorite meals!  The best part?  It's soft food and doesn't require much effort on my part for mashing it up in my mouth. It was delicious!!! Cody and Jordan got home in time for dinner so it was Nana, Mom, Cody, Jordan and me.  Kyle and Melanie even stopped by.  I was surrounded by love.  It made everything my body was doing feel better for the time being.  I pushed myself to be involved, to talk, to laugh, to spend time with them in that moment.  

I faded fast, however, and now I am home.  Loki and the cats have been fed and I am letting him play a little before I sneak off to bed.  Right now it feels like there is a ton of bricks sitting on my chest.  I absolutely, positively, without a doubt, DO NOT want this Wegener's to get any worse.  The lasting damage scares the crap out of me.  I don't want my nose to collapse, my kidneys to fail, to have permanently damaged lung tissue, lose my hearing or eyesight. Shall I go on?  All are potential long term effects of advanced Wegener's Granulomatosis.  And every day that I feel a little worse makes me a little more scared for something like that.  My plan is to be ahead of it, to keep it locked up inside me like a sleeping dragon.  Good clean eating, exercise, etc.  I have a plan ... it just needs to curl up and go to sleep now, not keep wreaking havoc on my body.  

It was a good evening.  I am so glad I was able to go and be with my family. Dan had an electrical emergency that apparently he's still working on because I haven't heard from him all day.  I would think since it's 9PM I would have received some kind of word as to what's going on but, I assume too much.  Oh well. What am I going to do?  I'm stuck here sick. 

Back to the radiation routine tomorrow.  If I feel worse tomorrow I'm just gonna cry.  I hate this with everything that I am.  I hate that everything has stopped.  I hate that I can't DO anything.  Do you know what it's like to feel like you're standing on a sheet of thin ice?  That there's a ticking time bomb inside you? At any moment, things could go from what it is now to me being in the hospital.  It's not an easy thing to wrestle with mentally.  

Alright, I'm just being too venty.  I am going to go have some water and try to get ready for bed.  I hope everyone had a wonderful weekend.  The weather was fantastic wasn't it?  It's almost April, that's just crazy to me! 

Anyway ... have a good night!! 

Saturday, March 23, 2013

Do NOT let your mind run on you ...

I had an early night last night.  I was really feeling quite lousy and I knew I needed to get up early because I offered to drop hubby off at the park and ride since he would be working in San Francisco today.  I also didn't want to leave our truck sitting in a place that is known for it's auto burglaries.  Besides, it's literally down the street, I could drop him off just fine.  So, I crawled in bed and was asleep before I think even he was ... told you, I wasn't feeling good at all. 

What happened after I went to sleep frightened me.  I woke up once with my heart skipping around in my chest like a mexican jumping bean.  It hurt too, which worried me.  Chest pain is nothing to shake a stick at but, when your heart acts up as much as mine does, you start to look for more serious complications.  It hurt but it wasn't "Crushing Pain" like they describe as a heart attack.   I was able to fall back asleep, and it was then that I wished I didn't. 

I was at work.  I was bringing food to everyone and passing the items out.  When I turned around, the windows that normally lead to the hallway (or viewing platform for those who are familiar with the term FISH BOWL!) didn't look out onto the hallway but a yard.  A regular yard with grass and a fence.  Nice view, right? Wrong.  There was a man standing there, a man wearing a black suit and a wide brimmed black hat.  Anyone see where I'm going with this?  

Have you seen Poltergeist?  Do you remember the creepy, very old, crusty man preacher guy who came looking for Carol Ann?  He looked like death walked in?  He kept saying "Carol Ann!! Carol Ann!" in a voice like a zombie?  Anyway, it was him.  I was freaked out by him as a child ... and in my dream I was PETRIFIED OF HIM!

He came up to the glass, very quickly for his oldness and pressed his face to the glass.  His voice was still raspy, it was still like The Walking Dead.  He looked right at me.  "You're going to die.   You're going to die, Nicole."  And, he kept saying it.  Everyone was trying to cover the windows, to hide his face from me.  But his words kept playing over in my head.  He kept telling me that I was going to die.  
I woke up from this, of course.  But, I was freaked the heck out.  I know dreams mean nothing but it doesn't mean I was totally cool as a cucumber, being sick like I am and dreaming about a guy that looks like death telling me I'm going to die.  

I think it just stirred up a bunch of fears about my disease.  I have to stay ahead of it.  I have to keep two steps ahead of it at all times ... or it could put me in the hospital or worse.   That's gotta be what it was.  Right? 

And then ... after taking hubby to the park n ride, I came home and crawled back in bed for an hour or so more.  I probably would have slept longer if my phone didn't ring.  I answered it because it was a blocked number and could have been a few different things.  Anyway, I answered it the voice was all muffled.  At first, I thought someone was doing the dirty deed on the other end of the line but then, it sounded like they were muffling their voice.  I couldn't understand what they were trying to say but it was creepy as hell.  I ended up hanging up quickly.  I don't know who or what it was. They didn't call back so it obviously wasn't important.  

So ... after that lovely morning, I'm a little on edge today.  I have to start my Prednisone taper since the heavy dose isn't doing anything to stop Wegener's from being a pain in my ass.  My doctor doesn't want to keep me at a high dose if it's not helping.  If a lower dose helps, he'll keep me there for longer. I'm still coughing like a sea lion, I still spit up specks of blood, I have pain in my nose, my head, my eyes, my teeth, my chest.  I get short of breath if I walk too far (and no that has nothing to do with my weight!).  It sucks.  So ... today I took one less pill.  Not sure if it will help, but at least maybe I won't be AS hungry now.  That will sure help me out.  I was starving last night again.  Stupid steroids. 

Weekends are radiation free.  They do that to let the side effects ease up a little before they are zapping me again.  Unfortunately, my mouth still feels like someone ran a rototiller through it.  So, I'll stay on my soft food regimen.  Can you believe that I found recipes for blended up hamburgers and fried chicken?  It was on a cancer website talking about radiation of the neck and mouth area.  I'm sorry .. but that's gross.  I'll eat something else instead.  

Today's writing report, yes ... I did write today.  I wrote early too.  That leaves the whole day for me to take another stab at it if I want.  Today, I wrote 7013 words.  Thats the most so far since I've been plucking away at it.  It's 123 double spaced pages.  I get to do the fun part now, write all the cool parts.  At least, that's how I look at it to motivate myself.  I even have another idea for a second book.  (Not tied to this one).  My darling husband gave me the idea.  He had this dream one night and knew it would be something I'd dive right into.  
He was right.  But, I am not going to allow myself to do anything with it until this one is done.  That's where I'd always derail myself before, I'd focus too much on too many things.  I need to bring this story to a close, get a rewrite in and see what I think of it before I move on. 

So what if it gets rejected?  I'm not even going to think about that right now.  

I'm hungry.  I should probably eat something for lunch.  I want an Ike's Sandwich.  I couldn't possibly chew on it but DAMN it sounds so good.  Prednisone also makes things that are bad for you sound like slices of heaven.  Like, an Ike's sandwich.  I'm having one of those the second I can chew again.  If you've had one, you'll understand.  

OK, I'm going to die in my cupboards for something to eat now.  

Friday, March 22, 2013

The Purple Shot

I slept last night.  Yay.  I slept for about 7 hours.  I don't remember waking up at all.  I don't think I did because my bladder was ready to rupture when I woke up at 7am.   How was I able to get such a glorious night of sleep?  Why, I took a small purple shot of heaven.  

Zzquil.  Zzquil is from the makers of NyQuil.  Only, there's no cold medicine in it.  It's just that zonking power that NyQuil packs.  I take it and zzzzzzzzzzz.  They say it's non-habit-forming.  I don't take it enough to know if I crave it.  I just know I wasn't sleeping well and needed some assistance.  You should try it if you can't sleep, it's heaven in a tiny glass.  The flavor isn't too bad either.  They have the geltablets if you don't want to toss back a shot but, the flavor isn't all that bad.  Kind of grapey.  At least they don't market it in the original green death.  I'd have to go with gel tabs if they did that. 

Did I really just devote an entire paragraph to sleeping medicine?  Oh yes.  Too bad I'm not being sponsored.  Maybe they'd send me a crate of zzquil!  Yay!  I didn't even have any weird dreams.  Well, nothing weirder than I have been having recently.  

My Wegener's monster woke up today and is grumbling at me.  My nose burns, my eyes burn, my chest feels like there is a tight rubber band around it and my cough has sparked back up.  All this after I emailed the doctor this morning asking about my steroid taper.  I'm supposed to start the slow progression to taper off the meds so that I am not on them.  It's also to see if it made any difference in the Wegener's.  Unfortunately, I don't think much has changed in the world.  I know after radiation I crumble to pieces from radiation ... what happens before I go ... well that's the ol' Wegener's.   My immune system will continue to go haywire until the immunosuppressants are in my system.  Right now, my meds help with the inflammation that is caused by my psychotic immune system.  But, it can only make the inflammation go down ... it doesn't do anything for keeping ol' psycho from flaring it right back up.  It's like a tug-o-war in there.  But, Weg's, you're in for a big surprise.  As soon as the laser beams are done wreaking havoc on my body ... then you're going to be shut the frick down.  So, enjoy your little heyday ... it's going to short lived. 

I got up this morning and jammed the ol' toothbrush in the mouth because my mouth had that super dry, super yucky taste.  But, as soon as my toothbrush hit my gums everything lit up.  WOW!  PAIN! The gums on the left side of my mouth are completely inflamed (radiation) and PAINFUL.  It wraps all the way around to my front teeth.  It feels like I ate an entire box of Froot Loops.  Do you all know how badly they tear up your mouth?  I didn't eat anything that could have caused this, it's from the radiation.  It took everything I had to finish brushing my teeth.  Oh my god, it hurt so bad.  At least now I can't eat anything super bad for me ... if it requires any kind of actual hard chewing, impossible. 

When I was perusing recipes, trying to find something to put on the menu, I skipped over so much because the thought of anything crunchy or textured in my mouth made me want to cry.  So, maybe this will finally reverse this prednisone induced chow fest.  I ate too much for lunch but it was soft. 

I just feel like shit, pardon my language.  I have a headache, I have sore gums, I have sore teeth, my nose and eyes burn, my chest hurts, I cough, my body aches and is weak.  My heart is doing it's weird thumping/skipping/pounding thing (Damn HASHIMOTOS!)  I just want to lie here.  I don't think I am going to write today.  I don't want to use my brain, it hurts.  I can take one day off right?  If I get motivated later I'll crack open the Word document but ... right now I just want to lie here.  I don't even want to sit up.  I need to go put on something more comfortable but that involves walking into the other room.   Yea, I can't do it.  I'm that wiped out.  

I hear people say they are surprised I'm so fatigued from radiation.  It's the main side effect ... and I have an autoimmune thyroid disorder and a very serious autoimmune disease.  I have three simultaneous issues.  And here I thought having two was bad.  haha.  The hashimoto's really only bothers me when my heart decides to dance a jig in my chest for no reason.  But, Wegener's ... think of how you feel when you're fighting a cold.  You know the feeling ... you have no energy, you ache, your head is in a fog.  That's your immune system trying to fight the bad germs ... for me?  My immune system is trying to fight me ... it fights me every day.  And that is why I am feeling even more wiped out than I probably should feel.    I'm supposed to listen to my body and my body is screaming at the top of it's lungs for me to do nothing but lie here.  

And so ... lie here I will.  

Thursday, March 21, 2013

A writing MACHINE!

I am proud of myself.  I'll say that right now.  If you know me, pay attention because I don't normally promote myself so highly. But, I want to note here that I am proud that I sit down and make myself write.  I fully intend on finishing this novel, doing a re-write and edit and finding out how to submit it to a publisher.  Or ... publishers.  It's gonna cost some money so I don't know when I'll do it.  But, I am going to do it.  It's on my bucket list.  I haven't really made a full bucket list but that's on there.  It's on there twice.  Submit something to be published ... and then submit something that gets published! 

Today's total: 6271 words.  My novel now stands at 99 pages!  Ninety nine pages!!! I'm excited. Just about 200 more to go and I'll feel like it's long enough that I can go back and edit and add some spark to it.  The first draft is never good enough to be the finished product.  A little author I know, named Erica Spindler, filled me in on that! She offers such great insight on her Facebook page.  Oh to have her life, I'd love to go find a place in town to spend some time writing.  This girl is dreaming again ... 

I had a visitor today.  My darling, PJ, came to see me with her lil man Peter.  She brought me some yummy yummy dinner and we had a few moments to chat.  She's promised to help me with my new look when I'm sporting the Gillette Smooth bald head.  It makes everything sound like it's going to be fun!  Loki just loved Peter and wanted to knock him over.  Loki was not happy when I put him in the ex-pen and Peter wasn't over there petting him.  I was happy to see my puppy gave him kisses as he was leaving.  Good boy!! 

I got severely annoyed while waiting for radiation today.  I know it has most to do with the steroids.  Yes, 'roid rage exists.  It exists even when you aren't juicing for muscle and stamina.  It exists when you are forced to take steroids for your health.  I've felt myself angry at times for no reason and now I know why.  Today, I checked in at radiation and sat down to wait.  Normally, it takes only a few minutes before they come get me but today seemed extra busy.  There were people EVERYWHERE in that tiny lobby.  But, everyone was just sort of sitting there talking.  Then, someone's phone rang ... and rang ... and rang ... and the woman kept talking to her friend as she slowly picked up the phone.  She finished her thought before answering and suddenly, her vocal volume skyrocketed.  She had been talking quietly with her friend but now it was like the ENTIRE building had to hear her conversation.  That was enough for me.  But then, she got up and starts pacing the small lobby, still talking loud.  The nurse comes to get her and she waves him away, pointing to the phone.  I'm sorry ... you have an appointment.  Shouldn't you tell the person you'll call them back?  Or ... step outside and enjoy the sunshine while you take the call?  

I felt anger coursing through my veins like lava.  I kept my cool somehow.  I don't know how because there were several times I wanted to say something.  I get it, she has cancer.  Hey, so do I.  Everyone in here does.  We don't expect to be able to be rude because of that! 

It's the steroids.  It made me overreact.  Even now I feel a little bad mentioning it.  Oh well.  To each their own, I guess. 

I am beyond thankful I was able to do my errands before radiation. I needed my zzquil, some crystal light, and to exchange cat food.  I got that done, then went to my appointment.  What little energy I had when I walked into radiation was completely non-existant when I left.   I was dizzy, run down, shaky, and weak.  Thankfully, all I had to do was go home and lie down.  And ... here I am.  Well, right now I am sitting.  

I find I have energy in the mornings, the nights I am useless.  There is no way I could have pulled this off  and stayed working.  Sometimes I have no energy to lift my arms.  It seems like an exaggeration but, it feels like that.  I am in pain and lethargic at night.  I wouldn't be good to anyone in dispatch like this.  This was a good idea to stay out.  Because I'd be begging off desperately now and leaving everyone in a lurch. 

I have a confession.  When I got zzquil at Target, I got cookie dough and made cookies.  I KNOW!  I shouldn't!  But, I wanted chocolate chip cookies.  I wanted them and they were there as I walked by to get the Crystal Light.  It's horrible.  I shouldn't have done it.  I'm just going to get fatter and fatter but ... I wanted them dang it.  I wanted them and it's all about me right now.  

At least, that's what Dan said.  Everything has to revolve around me right now.  I need to tell him what I want to eat and he will go get it.  So, I wanted cookies and I made them.  I promise I won't eat them all.  

Plus, it makes my house smell good.   Hey, I gave up soda.  I only drink water.  That's a big step.  I'm gonna lose my tastebuds any day ... at least that's what they tell me.  Things do already taste a wee bit different.  Oh great. 

Wednesday, March 20, 2013

Duh, Double Spaced!

Since I have been trying to write every day, I've been trying to figure out just how long my novel would be if I submitted it to a publisher right now.  I was doing some research on manuscript submission and what do you know ... manuscripts need to be double spaced.  My work so far is single spaced.  It felt like I wrote and wrote and wrote and had a crazy amount of words but less than 30 pages.  Well, now, I have 76 pages.  I wrote an additional 6519 words today and it seems to make more sense now that the plot is where it is at 76 pages in, versus like 35.  I'm glad I was able to sit down and write today.  I almost didn't.  I told myself I didn't have to write everyday!! But, I did.  

Feeling like crud of course.  Nothing's changed there.  It takes everything I can muster to walk back to the bathroom a million times a day.  It takes all my energy to walk in and out of the radiation treatments.  But, I'm all for keeping up appearances and I smile and pretend nothing is wrong with the people inside. I meet with the nurse tomorrow after my appointment.  I'll be honest with her because I am supposed to be.  But, I feel like my short interaction with the zapping staff should be pleasant.  I don't want to be whining at them.  I know, I know.  I'm allowed to whine but it's just not something I like to do. 

I still have a low grade fever.  Tomorrow will make it a whole week that I've had this low grade fever off and on.  I don't know what to attribute it to.  Wegener's or Radiation.  Thats the difficulty I'm having.  I need to monitor my wegener's symptoms to keep my doctor aprised of my condition.  But, some of them are the same as radiation symptoms.  I know when my teeth hurt in the very front, it's my weg's ... when it's on the side, it's the radiation.  I know my sore throat is different when reacting to radiation than when it's weg's.  But, I'm so beyond tired of having something bothering me ALL the time.  I'm also just plain tired.  I don't sleep soundly.  I wake up in pain, I wake up to pee.  I wake up for no damn reason other than I woke up.  I can't get comfortable even though I have absolutely no energy to change positions.  

Hey look, I'm whining again.  I'd like to say that I am just documenting things but I'm whining.  I'll admit it.  I was able to get my dishes washed and out of the sink.  That made me happy.  I also checked to see if I needed to do laundry and I don't.  I'm OK for a few days.  Unless Dan has stuff hidden in the car.  Sometimes he brings in like a weeks worth of sweatshirts and the laundry basket went from looking empty to overflowing!!   Laundry and dishes give me some purpose.  I feel like I am contributing to life.  I'm not contributing anything else at the moment.  I'm a blob on the couch.  I am trying to embrace this, I am.  It's just such a hard thing to do.  Luckily, I have no other choice because doing things requires energy and that ... I have none.  

I finished and started another book (reading this time) and I am already hooked on this next book as well.  I am managing to stay on top of my water intake.  I'm trying to slow down my food intake but it's calling to me because my stomach growls and begs for it.  I know I shouldn't worry so much about my weight but my next medicine is dosed based on my weight.  I'd like to try and bring the number down a little bit so that I am not being given such a crazy dose of meds.  It will make the side effects that much worse.  

I need a nap.  I'd just really like a deep, restful, sound sleep.  And a bottle of Zzzquil.  Melatonin just doesn't do anything for me anymore.  Bring on the zzquil.  Does Costco make a 5-gallon jug of that?  Because they should.  It's awesome.  I'm just out at the moment.  I only make one trip away from the house a day centered around treatment so when I keep forgetting to get it ... it waits another day.  I'll try to stop by Target or Safeway tomorrow on my way home from treatment.  

Anyone watching Dancing with the Stars?  I am this season.  Why not?  I've got lotsa time!  I wanted to when I saw that Aly Raisman and Kellie Pickler would be on it.  I loved Aly in the Olympics.  And ... Kellie Pickler has always been endearing.  She knows she's a bit dimwitted and doesn't care.  She also shaved her head because her best friend was going through chemotherapy. That is a wonderful person.  And she looked GORGEOUS!  It gives me hope for when it's time to get out the clippers on my head.  Anyway, I loooooove the costumes.  I find myself watching the pros more than the celebrities.  I think the way they move is phenomenal.  I would love to be all thin and dolled up in those gorgeous sparkly costumes. It's why I loved figure skating as a kid too.  Watching it anyway!  I'm like a giraffe on skates.  All legs and falling over.  Anyway, the sparkles!!! I love it.  I'm such a girl sometimes.  Oh ... and Dorothy Hamil.  I loved her.  She's so sweet and humble.  SHe's a real class act.  I loved Andy Dick.  I thought he did better than they judged him.  I hope he sticks around.  He's really come a long way from where he was and that should be celebrated.  I'd like to see something good for him.  

I also might give American Idol another chance tonight.  As long as I fast forward Mariah Carey's completely fake compliments.  She doesn't care. She just wants to be on the screen.  Nicki Minaj seems genuine.  She is someone who knows exactly who she is and what kind of artist she is.  That's something Mariah Carey still struggles with, I think.  Anyway, I might watch it.  It saves my DVR'd shows for during the day when the trashy talk shows are on.  I don't need to know who the baby daddy is, or that someone slept with their mother's boyfriend.  I haven't even tapped into my Roku and Netflix selections yet.  Most of the time, I'm doing something like reading or farting around on the iPad while there is a show on.  

*sigh* The news bothers me.  But, I like to stay aprised of things ... yet it makes me angry.  It's a no-win situation.  I like the morning news.  Dave Clark on Ch 2 makes me laugh. He's so perky! Dan and I like to do our Dave Clark impersonations.  We get to laughing so hard.  I also like the 5 o'clock news because I like Gasia Mikealian.  She's quite beautiful.  I think it's her exotic look.  Dan and I both remarked that we think women of eastern indian descent are gorgeous.  I don't know if she's from that area, but she's quite pretty. 

Well, I'm rambling now, and I can literally feel my legs disappearing.  I'm going to try and take a nap! 


Tuesday, March 19, 2013

Is it a fair trade?

Oh Prednisone, have I ever told you that I hate your guts?  Hang on ... potty alert ... sorry, I started to write this and realized if I didn't set this aside and go pee, I was going to wet the couch.  It's microfiber!  Just kidding.  I am sorry for the TMI but it just happened.  So, where was I?  Oh yea, my hatred for corticosteroids.  My corticosteroid in general.  Prednisone.  Side effects include ... weight gain.  Most of this is water retention, and the 100plus ounces of water I drink a day isn't helping in the water retention.  However, there is also the ravenous appetite that comes with it.  I had been hoping the radiation making me nauseous would counteract the ravenous appetite but ... it hasn't.  I am hungry ALL the time.  I want to eat ALL the time.  I've gained weight.  I thought I had shed a few of those extra lbs but then this weekend, I ate too much and it swelled right back.  Probably water weight again, but still not something a girl like me wants to see when I step on the scale.  And I have to be weighed every week at radiation.  They watch to make sure you are eating and not wasting away.  I think they have some time before they need to think of me wasting away. Anyway, the number this week was the same as last week which I didn't want to see.  So, I'm gonna be real strict with myself tomorrow. 
But, damn, prednisone. You're killing me.  Aren't you supposed to be helping me? 
Today's zapping session went better than yesterdays.  I forgot a hairtie yesterday so my mask fit differently without my teeny ponytail holding my head in that just right spot.  I had to hold my head up into it.  So, that made my neck hurt.  Yay, another joint in my body hurting.  Today I had my baby ponytail, yet they couldn't find a good spot for me on the table and had to do the images twice to make sure the laser beam would be in the right spot.  It left me with an extra amount of pillow markings on my face.  What are pillow markings?  Let me show you! 

This is what my face looks like after radiation.  It shows you how tight that mask on my face is.  It leaves marks like this on my forehead, under my nose, my chin, my cheeks, my eyebrows.  This is why I am glad I was able to drop off the Les Schwab payment before the zapping.  I hate being anywhere in public after with this meshing on my face.  It looks like I fell asleep in a screen door!! 
I learned I don't have to wear my glasses, but, I can't wear my contacts right now.  The laser isn't coming near my eyes but, the pressure I've been feeling behind my eyes makes them uncomfortable.  So, I still wear them.  I've been getting some compliments but, it's just not the same.  I like being free and having loose eyeballs to see every which direction.  I also hate my face so, having something like glasses on it doesn't help the situation.  
Today, I went onto my Kaiser health planner thing and was looking at my past results because I'm going to go back in for another thyroid blood test probably tomorrow or the next day.  I checked in my "Ongoing Health Issues" to see what they have me classified as.  Apparently, I have three concurrent diagnosis.  Not just two.  Oh lucky me.  
I do have what is called Hashimoto's Thyroiditis.  My immune system also attacked my thyroid.  This is all separate from Wegener's Granulomatosis.  That autoimmune disease doesn't touch the thyroid.  But, apparently, my body decided my thyroid was also a foreign body.  So, Hashimoto's, my plasmacytoma, and ... there it was, actually written in my file Wegener's Granulomatosis/Granulomatosis with Polyangiitis.  It gave me some comfort to see it there.  Now, if I go into the emergency room for any of these reasons, it's there.  The doctors that I see can see that now, I won't have to keep explaining it as I had to every time I was bounced to a new specialist.  
I did some research on my new medication that's upcoming.  I'm gonna lose my hair, there's no avoiding it.  It may not fall out completely but it's gonna come out enough that I think I will end up returning to work without the only part of me that I really liked ... my hair.  But I'm OK with that.  I'm glad I kept all my hats.  The meds are given based on weight, so many mgs per lb.  I am fat.  It's the truth.  I'm not looking for sympathy.  I am overweight, it's a fact.  Which means, I have to take A LOT of this medicine which is going to mean I'll have some significant side effects. 
But you know what?  I'll go bald, I'll be nauseous for a few weeks, I'll vomit every day if I have to.  My disease is fatal if not treated.  I'd rather be bald than dead! So what if I have huge eyes already.  I'll just have to learn to put on some good makeup to try and make my face pretty in the absence of my hair. It's just hair, it will grow back and it's not like it would look bad becauase of a crappy haircut.  It will be a sign of what I overcame, what I fought back against and that I am still alive. 
So yes, Prednisone, I hate your ever-loving guts right now for making me gain weight.  I hate that you make me weak on top of the fatigue from radiation.  I hate what you are doing to my body.  I'm gonna hate your pal Cytoxan too, believe me.  But, you are both here to keep me alive and for that, I will take whatever it is you think I need to suffer through.  
So bring it, drugs, bring it on. 

Oh, and I wrote today.  10 pages 5676 words.  I know real authors probably do so much more than that but, I've done it three days now.  My "novel" is 27 pages long.  Well, 27 full 8.5 x 11 pages.  Who knows what that would translate into on those lil book pages.  Maybe I might even let someone take a peek at it.  Maybe.  I don't know.  It's still so raw.  But, I am excited that I am actually writing again.  It feels good.  It feels like me.  Maybe, when I'm finished, I'll do one of those Kickstarter pages to get funding to try and get it published.  Ah, the things I could do if I could make extra money writing.  Maybe buy a house with a writing nook in it for me?
A girl can most certainly dream.  Especially with the amount of free time I have write now!

Monday, March 18, 2013

It's gonna start getting worse

No one wants to hear those words when they aren't feeling good.  "It's going to start getting worse" says the radiation oncologist after my appointment.  I had told him that I've been dealing with a lot of symptoms from my granulomatosis but not so much from radiation.  I explained that when I do have side effects from radiation they don't last until morning.  My sore throat is usually gone when I wake up.  It's bad at night but I can sleep it off.  He had to break my bubble with those words.  He then said they have a prescription mouthwash that will numb my mouth and throat but they don't give it to you until the pain really starts, and they don't mention it until you're into the process either.

Well, thanks.

He explained that last week was only 4 times, this week would be five times.  Things would start to happen and stick around.  He said side effects aren't instant ... they grow, and continue to grow until sometimes months after radiation is over.  But, the long term ones won't keep me out of the game.  It's the ones that are about to kick into high gear that are going to cause me some sadness.

I also emailed my rheumatologist because things just suck!  I am WEAK! I was standing at the counter, trying to get my pills out of their bottles and my legs were shaking.  I wanted to sit down.  When I left radiation today, I was going to get a soft burrito from the new Chipotle but the line was so long and I knew there was NO way I could even stand in line to get it.  I've never felt like this.  Yesterday, when I sat in the seat and looked at the entrance to Trader Joes and knew I wouldn't make it ... I felt defeated and down on myself.  Now, this was even worse.  I am winded and it takes every ounce of my concentration to tell myself to move my feet up and forward.
My doctor wanted me to keep him updated on things that were going on.  But, he apologized to me that we can't start the Cytoxan yet.  He explained that once I do, things in Granulomatosis world will start to get better.  My immune system is having a party right now, going after whatever it can get it's hands on ... and unfortunately, while I'm being shot up with radiation, I am at it's mercy.  He promised we would start the meds as soon as radiation was done and we WOULD take care of this.  He seemed genuinely sorry.  I mean, as genuine as someone can sound when emailing. But, at least he seemed to be more int he line of yes, I have this disease, yes we'll fix it.  He gets it now.  I know he didn't want me to have it.  However, I do, what can we do but fight it?

Last night I got to spend some time with my family.  There were a lot of stories told about my parents.  It made my heart ache for those that aren't here.  Man, what I wouldn't give to be able to talk to my Dad about all that is going on.  Of everyone in this world, he is the only one who would understand.  He also had a diagnosis that required explanation whenever brought up.  Rare diseases and a sarcastic sense of humor.  That sums up Dad and I.  Ha Ha.  He would understand the frustration, although, he seemed to have the most amazing doctors ever.   I've yet to decide about mine.  But, anyway, what I was talking about is that I miss them so much.  It was good to talk about those funny stories though.  I have so many good memories in my past.   It reminded me that I have had a lot of life in my years ... even if I haven't used a lot of them to their fullest potential.  I could write a book of all the funny things that happened in my non-conventional family.

I'm trying to stay unruffled.  I'm trying not to stress about the things I don't have any control over, but, I'm not being successful.  It's hard to shut them out.  Taxes.  Paying Bills. Those weigh heavy.  I know my health should be on the front burner and it is ... it's just taking care of my health means hanging out at home, not working, while bills and taxes loom.   It's always been in my nature to jump to action, load up on hours, get things paid.  Stay ahead of the game! Now, I'm sidelined, and stuck, and forced to just think about it.   I feel helpless and stressed.  I know my health will be better.  That's the only thing I'm sure off.  Radiation will be done, cancer will be gone ... and then we'll kick Wegener's/GPA into hiding for awhile and ... then I have allllllllllll that debt waiting for me.  It's hard to ignore it.  It's like there's these big Emerald City doors that will open and release me back to my life ... but the Wicked Witch is standing on the other side with a giant bill from the IRS.  

I wish I could just see those doors, and know I can deal with what's on the other side later on.  But, I can't.  I'm trying.  I am.  I promise I am.  Maybe I should get back to reading, then I can just deal with someone else's issues and pretend mine don't exist?

I'll be back soon ... maybe tomorrow ...

Oh, I did write again today.  5075 words.  A little more than last time!  It's a start.


Sunday, March 17, 2013

Tres Pathetique

No, I have no idea if my title even makes sense.  Tres Chic means something is good, right?  Where are my French speakers? Anyway, I wanted to insinuate something being pathetic.  
Yesterday, Dan and I decided to get out of the house and just go tool around because I was feeling somewhat OK and I knew I could sit in the car and not be dead.  HA!  I was so freakin' wrong.  Even just cruising around in the car was too much for my patheticness!  By the time we got home I was in agony.  Today is even worse.  But, I am glad that we did go drive around and enjoy the beautiful day even if it firmly kicked my ass.  I don't know if I'll be able to do that again before all this crap wears off. So, I did get out and savor the fantastic sunny weather. 

Today, I'm toast.  Absolutely beyond pathetic, toast.  I cannot believe how I feel.  It's insane.  We went to Costco this morning (still not sure why ... we didn't even really look at anything) and then when Dan pulled up to Trader Joes, I couldn't get out of the car.  So ... I didn't.  Until I remembered that I needed more plain greek yogurt.  So I schlepped myself into the store to get my yogurt and it took absolutely everything I had to get into it.   I couldn't believe how much this sucked.  But, I did get my greek yogurt so I don't have to go back out to the store. 

Dan got inventive last night and decided he wanted to make corned beef and cabbage today.  Since I have had this dish a grand total of like twice in my life, this was all his thing.  We got a brisket, cabbage, potatoes and carrots and he found a recipe.  He was up first thing this morning getting it all in the crock pot. We sent out a text to my brothers and stepmom to see if they wanted to stop by and then knew we would need a lil something extra.  We found Irish Soda Bread at Olivers (seems the only place that had it) and got a small cake, some chips and dip.  I also managed to get a few cupcakes from Sift because this is the only time of year that they have the Irish Car Bomb style cupcakes that Dan likes so much.   I got myself something different. 

And now, I can't move.  I am couch-bound and I can barely even sit up to type this.  All I wanted to do was ride in the car today.  All I wanted to do was be out of the house on a day I still felt somewhat-ish OK.  Why did it have to do this to me?  I know, I'm supposed to be resting but ... I didn't think being a passenger in the car would be such an ass kicker.   Lesson learned.  I will now remain close to my little cave and couch because apparently anything other than surfing my couch is too much. 

I got the most awesome gift in the mail yesterday and now ... I am headed off to the world of Amazon greatness to get some new reading!!!!  I LOVE BOOKS!!!!!!!!!!!  Thank you so much to my darling Colleen!!!!! 

Friday, March 15, 2013

One teeny step

When I woke up this morning, I told myself that I would spend a significant amount of time "writing".  No, not blog writing because that really doesn't count.  The words just sort of tumble out of my brain in a jumbled free-flowing mess in the blog.  I don't have to think so much about what I put here.  It's a steady stream of thought.  I meant that I was going to sit down and focus on writing my novel.  I'm actually going to call it a novel.  I think I need to call it a novel because I have to see it as this thing that needs to be so many pages/words long.  A book can be any length.  A children's book is like 6 pages so that's not a very lofty goal to set for myself.  

I got to have a wonderful visit from one of my most favorite people in the world today, Miss Monica Baker.  She brought me this kick ass smoothie that I cannot wait to keep making for myself as well.  It was awesome.  I am glad she brought two servings because I have more for tomorrow!! Yay.  Anyway, it was wonderful to sit and talk with her.  I miss working with her and being able to work out with her and have our lil vent sessions about whatever we want to talk about.  I am going to have to have more of her in my life because she makes me feel happy.  Monica, if you see this, we have to hang out more!! I will do my damndest to make that happen too.  I need to see your lil boys grow up and not just in pictures. 

After she left, to go workout without me, (sniffle) I had some smoothie and played around on my iPad.  Then, I went to get zapped for the last day this week (thank god).  I am not feeling like a superhero yet.  I mean, they shoot me with what feels like gamma rays every day, I would think I would start to have some sort of super power by now.  Nope, still plain ol' me.  

I sat down on the couch when I got home.  (It kicked my butt today, it's all I really feel I can do at the moment).  I pulled the laptop onto my lap (go figure) and opened the Word document I had set up yesterday for this very reason.  It's labeled "Alice Redux" because my story takes some snippets and inspiration from Alice In Wonderland.  But, that's really all you get to know.  Anyway, I'm pretty pleased with myself.  I wrote 4,511 words in just under two hours.  I know that seems slow, but ... 9 pages!  Nine pages, which I made into the first chapter (for now, I alway edit and add more).  I'm pretty stoked that I finally shoved this story off the ground.  I keep thinking about it, getting inspired for scenes of the tale here and there but never really getting down to it.  Well, now I did.  I have a one chapter start, a nine page start, a 4511 word start! 

I am sure there are authors out there who pound out more than 9 pages in a sitting.  I am taking baby steps.  I really want to write something I can send in.  I really want to write something I can be proud of.  I really would love to even just have one novel published.  It would be an excellent side job, wouldn't it?  I could use a little extra fundage to pay off the bills that will no doubt add up from being on my ass!! 

It does make me feel good that I started.  All it takes is a start.  I may work on it some more later.  I'll keep you all informed. 

Now, today's zapping seems to have zonked me out.  It literally zapped all my energy.  I physically felt it leave me as I was driving home from radiation.  LIke, someone opened the chute and it all fell out.  Drained, dizzy, lightheaded and ready to be back on my couch in my sweats.  The drained/sore throat is definitely from my radiation.  The lightheadedness is the usual crap from my other ailment.  I still cough and I have these nasty pains in the bottom area of my lungs.  I'm not sure if it is from how I'm sitting on the couch (because it's not the best posture) or something else.  I also woke up last night in agony.  My knees were KILLING me as if I had been walking or squatting all day.  My left lower back was also screaming at me.  It was horrible.  I cannot figure it out.  Today my ankles hurt pretty bad and feel a little puffy.  It sucks that I have to keep track of these things.  I need to keep an eye out for things progressing and getting worse with the Wegener's/GPA.  I have done enough research to know what to expect from my radiation side effects so I am trying to keep a record of the non-radiation issues for my doctors. 

Also, if someone can remind me ... I need to call Stanford and UCSF to see what it would take to see their vasculitis specialists.  I was supposed to today, but then I got soooo involved in writing and mentally feeling happy that I let the crappy stuff slip to the side. 

I remember saying to Monica earlier that some days when I feel OK I feel bad for being off work but then, by nighttime, I'm in bad shape.  Truer words couldn't have been spoken.  Because in just a few short hours after seeing Monica I am the complete opposite of what I was when I saw her.  My teeth even hurt a little now ... They did tell me that things would ramp up and get worse in the second week.  It's the end of the first and I am starting to feel a little more than I did before.  

Well, that was my day so far.  I don't think there will be anything else to report as I am sure my night will consist of sitting in front of the tube, iphone or iPad, wasting brain cells because why not ... my brain still works! 

Thank you for tuning into today's episode of my ongoing saga!! 

Thursday, March 14, 2013

I'm Your Huckleberry

Ahh, my favorite movie Tombstone.  Full of excellent one-liners, great acting, old fashioned clothing and buildings, historical ... it has it all.  Including one very tuberculosis-infested Doc Holliday.  In fact, Val Kilmer has the best lines in the whole movie.  

Alas, I am not talking about this movie because I watched the movie recently.  Nope.  I bring it up because I feel like I am living Doc's life.  Sort of.  This blasted cough.  This blasted blood filled cough.  Yep.  For the better part of two months now, I've coughed up blood.  

Now don't panic, I'm not coughing up just blood like Val did in the movie.  If that happened, I wouldn't be sitting here writing about it.  I'd be parked at that hospital waiting for them to FIX THIS NOW!!! It's spreckled with blood.  When I had more infection in the lung, it would be spreckled over whatever color I was getting up at that point.  Now, it's just the blood. 

And it's brighter ... redder.  That worries me a little.  I was thinking that this high dose of Prednisone that I am taking would have stopped this cough altogether.  I don't see much difference in it.  Now, the coughs are more violent, making me almost vomit, or actually do so.  It comes without warning, BAM, I'm choking and it's there.  Or today, it's chesty. My chest feels like it's full of crap, full and heavy and I'm coughing like mad.  I desperately needed to cough during my radiation today.  It hurt sooooo bad in my back holding it in but my mask really doesn't make for much movement of my head and mouth.  

Not to mention, the coughing urge came up while the laser was hitting me.  Not before ... right during!  Stupid cough. 

And then, as if that wasn't enough.  I now have another low-grade fever.  Yep.  This is getting really old.   I wish I could put radiation on hold and take the Cytoxan right now.  My immune system is not happy with me and apparently wants to make that known.  

I'm currently having a dilemma.  Should I get in the shower now and wash my hair?  I am feeling awfully crappy. But, I want to wash my hair.  It's icky. However, I DO want to put on my sweats.  I do wear jeans to treatment.  I'm determined to remain feeling as normal as I can as long as I can.  I have to wear deep v-neck shirts for the zapping so it just works to wear it with jeans.    

I know, such decisions, right? Everyone should be so lucky to have to worry about what I do.  

In another topic ... taxes.  I was facing the music today in Turbo Tax and have finally did all I could.  I owe the Federal Government 6500 n' change.  I owe the State of California $1296. Yea, when you're sitting at home for two months like me this bill makes me want to pass out.  I know I can make payments, and I will.  It's the thought of adding another monthly bill to my currently limited income that has me nauseous.   In fact, I woke up at 3 am this morning trying to figure out how I could NOT owe the government.  Every option that came up had me owing the bank anyway so either way it's a bill, right? 

I am going to hopefully NOT have to make the first payment until I'm back to work in May.  I don't think I made my first payment last year until like July.  So ... there's hope.  

OK, I have to stop thinking about the money situation.  It will make me cry and I already feel horrible enough!!! 

I'm off to cough again.  This is getting OLD!!!!!!!!!!!!!!!!

Wednesday, March 13, 2013

My name is Nicole Grace, and I am a huge sap.

I am a kind person. I think I have a big heart and I care for people.  When I hear/see animals suffering I am a blubbering idiot.  But, I've been pretty closed off to the suffering of people.  I'll admit it.  There's a lot of ugliness in this world and people are suffering.  It's 50/50 on people suffering because of their own actions, and those being dealt an extremely bad hand that don't deserve it. 
Alas, now I look out upon the world through a different pair of eyes. I am 33 years old, I've lived and done some things.  I was raised in a very blessed existence compared to most.  My divorced parents were friends, I got to spend time with ALL of my family instead of alternating holidays or weekends.  We traveled together ALL the time.  There were Disneyland trips, Yosemite trips, camping all over the place, BBQs, dinners, etc.  Looking back, except for mis-managing my time over the last 11 years, I've had a pretty good run of things.  

Why do I say this?

Because I was watching an Ellen re-run today before the news came on.  There was a lady on there whose 7 year old son was a HUGE Ellen fan.  He also was born with half a heart and wasn't expected to live beyond a few months.  Now, at 7, he calls Ellen his "girlfriend" and they watch her daily, including when he's at the hospital.  He demands the nurses watch with him, and his treatments cannot interfere with Ellen being on.  So she had him on Skype and sent him an iPad, and a trip to Disneyland because it's the only place he wants to go and she wanted to meet him.  I've seen the follow-up episode to this one already and Ellen gives the family a very hefty check to deal with medical expenses.   Neat, right?

Well, I was bawling.  Quite literally heaving sobs on the couch. He's 7!  He's not even in double-digits (because we all remember how cool it was to hit double digits!!!).  He wasn't even meant to be here beyond a short time but he is and he's suffering for NO GOOD REASON waiting for a heart transplant.   It isn't fair.  Children being handed these life sentences.  It is sad when old people or adults are diagnosed with cancer and what not but ... KIDS?

I can't believe how I was so concerned with dying.  Who cares if I did?  I am in my thirties!  I've seen this world.  I'd gladly step out and allow some child to live a normal life.  Living where they can experience regular things that we take for granted.  

Like, today, for instance.  It was gorgeous.  I sat outside after my radiation because I was sort of feeling alright and read a book while my dog ran around like a maniac on the lawn.   At first, my brain was all thinking about the lawn and how long it was and whether I would feel up to taking a spin on the riding mower to shorten it.  But then it was gone.  Who cares if my lawn is overgrown?  Right now was for enjoying things.  I felt the sun on my face, and listened to the sounds around me.  It's pretty quiet where I live.  So I listened.  I listened to a young sheep somewhere bleating.  

When I went to get cat food, I was overtaken by the scent of the warm night.  There's a certain fragrance to the heated day.  It was amazing.  I was happy to be out in the warm air, to feel the fresh air carressing my skin.  It felt fabulous.  I could ignore the pain in my throat, could forget that I was walking slow on legs that felt like they would fold underneath me in any minute. 

This is a beautiful world we live in, aside from the shit that sometimes funnels down to us.  I acknowledge all of the things I've taken for granted.  And, in savoring these wonderful things my heart hurt again for children who are kept quarantined in hospital beds because the simple germs that we have built an immunity to would destroy them.  Children who are injected with chemo-drugs, who lose their hair, who never know what it is like to just be a kid.  

Sure, I've been tossed a pretty crappy hand by the dealer of life.  I'll have this Wegener's Granulomatosis/GPA for the rest of my life but I can stay ahead of it and live til I'm a bitter ol' bat.  Sure, I had a cancerous gland in my neck but it's gone and every day I'm shot with my own load of gamma rays to make sure it leaves for a long time.   All of this happened when I was a well aged adult, not a fresh faced, innocent child.  

My name is Nicole Grace and I cry watching Ellen. 

Tuesday, March 12, 2013

And, we're off ...

Let me start by saying that trying to sleep last night sucked.  I have no idea why but close to the end of my shift I had a hot flash in my face alone.  My face was on FIRE! When I got home, my body was reacting to the temperature and wanted to be under the covers, as long as I kept the comforter clear of my face.  Which also meant there was a power struggle with JD who wanted his spot snuggled up to my cheek.  That woke up Dan and ... then I felt bad. 
Once I was able to get to sleep I had nightmares about today.  I was told over and over again that I wouldn't feel a thing, it would be like 5 minutes of zapping, etc.  But, in my dreams there were people coming out with third degree burns running down their necks, etc.  Needless to say, I was not well rested when I got out of bed this morning. 
Still feeling sick.  The Weg's/GPA seems to be wanting to have a starring role in my life right now.  It doesn't want to take a backseat to cancer treatment.  I can almost hear it saying "They were looking into me when they found you, stupid cancer. I'm the star here!"  
My ears have a lot of pressure, they get muffled and then crack and I can hear better.  I know I have the ear tubes and it could be close to them coming out.  However, my ENT told me that when they come out, it's painless and I won't know.  But, all I know is I'm starting to hear differently again and they hurt!!!!! My eyes burn (prior to radiation) and I feel a lot of pain in my sinuses again.  It's like last year all over again.  
Anyway, I headed out to my first official zapping appointment more focused on the fact that I felt shitty than any fears from my nightmares.  I went right in and climbed up on the table. When they put on my mask, I got a little claustrophobic but, I wasn't going inside anything so I was able to deal with the squeezing feeling of the mask.  They have a beautiful cherry blossom sky scene lit up above the table but I don't have my contacts in for this so I was trying to enjoy the blurry blue skies and pink flowers.  Anyway, once they got started it was over rather quickly. 
They were right, I felt nothing.  We headed home and Dan hurried off to a side job.  
It was a short while later that I noticed my sore throat that I had this morning was gone and a new pain had taken it's place.  This is a hot, burning, scratchy feeling.  I feel even more run down than I have.  I don't want to get off the couch.  It could be the other medications I am taking that is doing this ... who knows?  All I know is I am grateful that I bowed to the will of the doctors and put in for the time off. 
I don't think I could effectively work today.  Talking hurts.  I am only comfortable as I am now, half laying on the couch with my head in the pillows.  
So I can't really give an accurate report of the first day because my stupid Weg's seems to want to run the show.  I feel crappy as heck, but I can't assign blame 100%.  Weg's/GPA or Radiation side effects?  I wouldn't think they would come on so quickly. 
Tomorrow is day two. I have my whole schedule.  I've been in contact with the rheumatologist about things not getting better physically and he wasn't happy about that.  It's a gnarly disease that could get very angry, very quickly so ... let's get radiation over with so I can start the medication to shut down the bad immune system! 
That's all for now ... I'm really not feeling up to this. :(