Tuesday, April 30, 2013

Positive Thinking and remembering to be Thankful

Goodness me I have been in a funk, haven't I? I cringe to look back upon my entries.  Whine, whine whine.  Whoa is me.  What the heck was I thinking?  Why did I don a cloak of such a "poor me" attitude.  Granted, I know a lot of what I wrote was pure ventilation of my feelings but, I still shudder to see how I had let myself be. 

Not anymore.

Today, I will acknowledge all that I am lucky to have, lucky to see, lucky to do.  I live a very blessed life.  Sometimes, I can't see beyond whatever roadblock I feel has fell into my path but ... I must remember that these other great things are there. 

First and foremost ... I have my health.  Despite it being less than stellar, despite the constant nausea, coughing, gagging, and feeling run down.  I am alive.  I have sent cancer into it's hiding place for the time being.   I only had to do radiation, which left me with a weird sunburny, peeling spot but ... I still have my hair.  It was only 5 weeks versus a lot longer.  And, it's in the past now.  I have moved beyond it.  I am no longer "in treatment".

I am married to my best friend.  Even though sometimes I am SO angry at him, or whatever.   He is my best friend and the love of my life.  He makes me laugh so hard, which in turn makes him laugh.  If anyone reading has seen me have a laughing fit, they will understand why my laughing makes him laugh.   I am sure ... no I actually have confirmation that I drive him nuts too so it's equal. 

I've always had a stable roof over my head.  I've never had to wonder where my next meal was coming from. 

I was blessed to be hired on with the Sheriff's Office in a damn good job when I was 22!  I can now work here for the rest of my working years.  This job has also afforded me some great things.  I've been promoted to training officer, I've received an award, and ... people donated their vacation time to me so that while I was off for six weeks being zapped .... I was getting paid and earning in-service hours.  I also have amazing benefits (yes, I griped about how much I paid in ER co-pays but in actuality ... it's a LOT less than anyone else pays!) and a wonderful retirement plan.  I am a lucky girl that I was able to get my hands on a job like this.

My parents had both been remarried to others before they died, giving me two awesome little brothers and stepparents to be there for me after they were gone.  Yes, I still feel their absence more than anything but, how many people are as lucky as I was to have forged bonds with these two stepparents long before they were the only parents I had left.  And ... they were all friends so I got to see BOTH my parents whenever I wanted to.  It wasn't reserved for just "weekend custody visits".  I could zip across the street to talk to my dad whenever I needed to.  And, we always traveled together so family trips were really ... "FAMILY TRIPS". 

I am blessed to have such a fantastic relationship with my stepmom.  I'm closer to her than I ever was with my birth mom (long story) and I know that makes me a very lucky person. 

I get to buy a house.  I'm buying a house.  I'm buying a house in an area I never imagined I would be able to live.  I am buying a house I can stay in for the rest of my life.  I am buying a home.  I am buying something that could mean this girl becomes a mom.  I am buying my future. 

I have three animals that I love with the force a person loves their birthed human children.  They kept me company when I was all alone at home during treatment, they were my constant companions and I am so happy that I have them.  I miss them right this moment being at work.  I feel like snuggling on the couch with my puppy and I cannot. 

So, you see, I have a lot of good in my life.  My life is bursting at the seams with good.  Sure, there are speed bumps and wrong turns in my life.  Aren't there those in everyone's life? We all make bad decisions, bad choices, bad moves but we can't let that define us forever.  We also have the power to turn those bad choices into good.  We can change the path we are on.  We can turn our frowns upside down into smiles. 

Sure, I am overwhelmed and for some reason, greatly opposed, to all the packing I have to do but ... you know what?  I am also SO lucky to have that option in my life.  I am soooo lucky that I am moving into a really nice home of my own.  So, while I might bitch and moan about having to pack my house ... there are those people who would give anything to trade places with me and I am very aware of that.

Life is good people.  Even in all the bad, the nightmares that happen to us, the heartbreak and the pain ... the good always comes around again. 

I quote a recent thing Patton Oswalt said "Look into the eyes of evil and say the good outnumber you and always will"  I think this is the same with bad events in our lives.  The good things will always outnumber the bad.  You just have to put a little effort into it sometimes, but, if you do ... you won't be disappointed.

Monday, April 29, 2013

Too much?

It's 7:25PM and I am thinking I may have rushed back into this.  But, it's going to be OK.  It's just that I am doing something and don't have the option of going and lying down.  I will get through this and every day it should get easier.  I am thinking that part of this has to do with the horrible night of sleep that I got.  I tried to stay up til 1am, which I did.  But then I couldn't sleep til like 2:30 am .... and then Loki woke up and wanted to go outside and pee at 3am.  He also wanted to chug down an entire bowl of water.  But, I was awake and had a hard time getting back to sleep when I got in bed.
Cue Dan getting up around 5am and me sleeping fitfully until I gave up and got up at 8. Well, woke up at 8 for good.  I stayed in bed awhile playing with my phone hoping the bright light from the phone would make me tired and send me back to sleep.

So this is me hoping tomorrow is better because I will sleep better tonight.  Right? 

Anyway, it feels good mentally to be back.  I had a flurry of radio traffic, and it all felt natural again.  The adrenaline.  Oh how I missed this.  I love what I do.  Not many people can say that.  As long as I can ignore other things that make me not love it here so much.  But, my fingers were flying over the keys, commands were still in my head, words were flying out of my mouth and I was managing things as if I had never been gone.

Of course, every time I spoke I'd then choke, gag and cough on my spit.  That's not such a fun part.  But, it's not gonna change so I better get used to it.

My return today showed me that some things never ever change.  It's unfortunate.  OK, wait, let me rephrase that.  Some things do change ... they get worse.  I am going to do my best to try and stay in a positive place.  One thing that stuck with me, said by my wonderful, albeit hard to understand oncologist.  Stress is food for cancer.  It helps cancer grow.  So, I cannot let myself get caught up in the web of stress that breeds from that.  And, I don't want to get caught in that. 

I love my job.  I have a blessed life.  Sure, some things sucked but ... something other people need to remember, things suck for everyone at one point or another.  I wish they would step outside their bubble and remember there is an entire world of people who have it worse than them.

Anyway, I digress.  I will not let this place get me down.  I love my job.  I've missed doing my job.  I am going to focus on that. 

Alrighty, have a good night y'all!!!

Sunday, April 28, 2013

I don't wanna grow up!

I don't want to be a grown up.  Grown ups have to make the difficult decisions.  For instance, refrigerator buying.  Oh my goodness.  You can't just run up and down the aisles, playing with all the pretty fridges, opening doors, pressing buttons on the nearby speakers and turning on all the music. Nope, you have to look at the refrigerators, look at the insides of them, are they the right size, deep enough, freezer on top or bottom? Water and ice dispenser? Dispenser inside or out? LG, Kitchenaide, Samsung or Fridgedaire? Stainless, black or white? 


I honestly thought we'd go to Lowe's or Home Depot, find something and be done with it.  Instead, it's been a very long ordeal.  And, then, eventually we will have to get a new dishwasher.  Thank goodness there's a new one in there already so we don't have to worry about that for awhile.  Lord knows there was a crap ton of dishwashers to look at too.  

My saving grace in this fridge-excursion was the Pacific Sales people at Best Buy.  The guy we talked to explained all the stuff to us and honestly, wasn't pushing us to buy something more expensive.  He answered ALL our questions and made the experience somewhat pleasant, instead of leaving me with my mind whirling.

There was also the long appointment at AT&T to discuss transferring our service and how to shrink our bill.  We'll save $60 a month, thank goodness for that too.  But, AT&T was painless because we had an appointment with our AT&T guy. 

Packing is a thorn in my side.  The kitchen is 98% packed, and on Friday we will load all the furniture into the moving truck, I'll bring the clothes and the kitchen stuff and we'll get to "living" in the new house and then slowly get the rest o' the crap over there.  It's gonna be a pain in the rump.  I'm already annoyed by it and we've only just begun.  

I don't think I would be as annoyed if I was armed with all my energy.  However, my body still says "WHOA!!!!" and drains to zero quite quickly.  

I will miss this place.  I will miss our neighbors, the quiet backyard, my memories of bringing home the tiny kitties and the baby puppy.  I have lived here longer than any other place other than where I grew up.  It's been somewhere I've actually felt at home.  So, it will be sad to not be here.  It will be an adjustment to make that new place feel like "home".  

My heart is heavy that I will be gone at night now.  I am happy to be back at work.  I need to be because now I'll have a mortgage! But, I LOVE LOVE LOVE being home at night.  I love going to bed at a decent hour.  I sleep SOOOOOOO good at normal hours. Someday ... someday my regular schedule will have me home at night.  Oh my god, do you even know how happy and healthy I will feel?!   Someday ............ someday.  FOr now, I am sad.  I know I don't work so super late.  I mean, really how late is one a.m. anyway.  But, it does not give me the wind-down at night. I come home to a quiet, sleeping household, have to be super quiet and go right to bed.  I want to come home and unwind after a long night.  You know? 

Well, I'm gonna relax and try to feel alright for the last night of being at home.  Yay for pajamas and a movie on the Roku.  

Goodnight, everyone, I hope you had a wonderful evening.  


Friday, April 26, 2013

Grab a tissue, this could get heavy

Today was a big day.  Today was a happy day.  So why am I so sad?

My brother always wanted to be a firefighter.  When he was a little kid he said he was going to be a firefighter.  Today, he got his badge as an official member of the Santa Rosa Fire Department.  Monday, he starts his full time job as a probie firefighter at the firehouse we both pretty much grew up in.  It's such a dream come true for him, his mom, and for me.  I knew one day there would be a Bagley in the Santa Rosa Fire Dept.

Today, he stood up there with the other recruits, after completing the 9-week internal academy, and had his mom pin his badge on him.  It's such an amazing feat for a 21 year old.  He's the youngest to be hired.   I was and still am beaming with pride for him.  Yet, at the same time, I had the most massive lump in my throat that I couldn't swallow, and several times had to talk myself out of crying.  Oh sure, I could have passed it off as tears of joy because for the most part, they were.

I just couldn't help wishing SO badly for my dad to be there with us.  As a dad came up and pinned his own son, my heart broke when I looked at Cody, knowing Cody would have loved to have his mom and dad standing there, slipping that badge on his chest.  My heart aches for the little boy who had to say goodbye to his dad WAY too young.  My heart hurts because I got to know my dad better than he did.  Huge parts of me feel bad that I got more time with my parents than my brothers did.

It was also one of those moments where I just missed him so much.  As Cody's girlfriend and I tried to get him to smile while he was standing there all serious, I remembered all the times I heard my dad in the crowd, cheering and calling my name, whistling and being a dad and embarrassing me.  I turned to Jordan and told her that if our dad was there, he would be so loud and Cody would have no choice but to crack a smile.  It was the kind of person he was, fun loving, and SO incredibly loving.

It hurts that he won't be there when Cody gets married, he wasn't there when I got married.  I know this is the case for a lot of families and I am not singling myself out at all.  It's just that our dad loved us SO much.  Nothing would have made him prouder than being able to see today.  And yes, I know he was "there" but ... it's not the same as standing there and shaking the hand of his son, a grown man.  A wonderful man.  I just wish Dad could see the amazing son that he has.   I wish so much that Cody could have heard the words that I was lucky enough to hear my dad say.

One day, while he was really sick towards the end, I was sitting on the floor in the living room watching TV with him.  He called my name and I looked over at him.  He was crying and said "I am so proud of you, I want you to know that."  And those words have stayed with me every second of every minute of every hour of every day since he left me almost 13 years ago.  I'm sad that Cody didn't get that same moment.  And again, maybe he did, I know on the last day my dad was awake and talking with everyone he and Cody sat and talked.  I shut down my ears because my heart was already breaking into a million pieces and I felt that moment was between my tiny baby brother and his dad.

I miss you, Daddy.  I miss you SO much.  I want you to know that Cody's doing OK.  He's doing great, in fact.   You would be so proud of him.  I know you would be.  I can almost hear you bragging to everyone.  He chased his dreams, and he's achieved them.  I'm speechless with pride.  You were there so much in our hearts today.  He looks so much like you.  He acts so much like you.  I would do anything for you to be here and with us today.  I really miss you, Dad, every day.  I love you SO much.

Today was just so high and so low for me today.  So high for Cody, So happy for him.  But, I'm having my own trouble with sadness and missing my dad so much didn't help.   I'm struggling a lot with everything that is going on.  I don't feel better and ... there's no more tests for them to do.  I have days that I am OK, and days that I am SO not OK.  But, this is life for me now.  Until they have some avenue they can look into, I need to adjust to how I feel and deal with how I feel.  But, at the same time, I want to be better right now.  I WANT to go back to working (just not at night!) and working out and being active.

I should be happy.  I'm buying a house.  My little brothers are doing good.  I am alive! But, still, the depression of being home and sick for so long is too heavy to shrug off at the moment.   Maybe once the routine has returned, and can maybe start going to the gym again ... I'll feel better.  I'll be happier.  Maybe once the move is done and I am not living among boxes, knowing I need to pack but lacking in motivation to do so ... I'll feel better.    Maybe if they FINALLY know why I am still so sick, I'll feel better.  Maybe when I have days where I don't have 6 bloody noses in one day and don't have two giant scabs inside my nose as if my nose is eating itself, I'll feel better.

Things will get better.  I KNOW I am lucky to have kicked cancer to the curb for the time being, I am lucky to have had our first offer accepted on our first home.   I am lucky and blessed in SO many ways.  Right now I'm just wearing a cloak of sadness, it's not a permanent thing ... it's just how it is for right now.

It's not forever.  It's just for now.

Wednesday, April 24, 2013

Expect the Unexpected

I had two doctor's appointments today.  One was to deal with a stupid skin infection (yay more antibiotics) and the other was a follow up appointment with Dr. Z, my oncologist.  I was all excited to get the free and clear from him to actually feel  like I was done and cancer free.  He didn't give me those words.  In fact, he placed a seed of worry in my head.  

I had a very rare occurence of a solitary plasmacytoma.  The rarest of plasmacytomas.  My bone marrow biopsy was clear for multiple myeloma, however there were rare plasma cells present ... now, those rare little cells could just become white blood cells and be totally normal and happy.  Or ... they could turn into myeloma.  Yea ... so I get to go have blood work done every few months to check my blood proteins.  Dr. Z's words were that we are going to be well acquainted for a very long time.  Yes, the follow up blood work is common for cancer patients but ... he followed all this up with more info.  People who have a plasmacytoma have a 50/50 chance that it will come back or not.  A family history of cancer raises the chance that it will come back.  Having the rare plasmacytoma at only 33 also raises my chances.  

I've been instructed to regularly check my neck.  Right now I have soft scar tissue.  Right now it's all healing according to plan.  (it looks ugly but he assured me it's fine, it's healing like it should)  However, if I feel anything hard, call him.  If I find any other random lumps no matter how benign they feel, call him.  A plasmacytoma can pop up anywhere, more commonly in the head/neck soft tissue areas but ... again, it can be anywhere.  

So ... I could be back in his office.  I'm gonna remain positive and say I'm not gonna get anything else.  In fact, my dietary changes as soon as we are moved in will help with that.  It's another reason to stick to this change.  My life could eventually depend on it.  

Unfortunately, right now I'm not doing alright.  It started Sunday.  I woke up feeling lousy and it went downhill from there.  My head started to hurt and then hurt VERY badly.  Not like migraine bad with the light sensitivity.  I couldn't move though, whenever I moved my head it hurt SO bad.  I took one of the Norco's I had left over from my surgery and even that didn't do anything.  Thankfully, I was able to sleep.  

At night, things get worse.  Especially if I have done anything during the day.  So right now, I packed today.  I went to the doctor, went to u-Haul and then came home and packed up the kitchen island and the dishes and glasses.  I was about to do the rest o' the kitchen when I ran out of fuel and had to move to the couch.  Once again, once dinner came to me, I couldn't eat it.  This keeps happening.  I feel horrible, clammy, feverish and incredibly nauseous.  

Now I feel all wonky and drugged.  I feel like shit, pardon my french.  I'm tired of feeling like shit!!! Dr. Z was informed of all this and wants me to just keep an eye on it.  Again, I'm recovering from radiation exposure, my body is now fighting back against all that ... so this could be related to that.  Who knows?  I'm supposed to keep track of things, but to not overdo it.  I'm supposed to rest when my body tells me to rest.  So, I'll finish packing the kitchen tomorrow.  

I go back to work in 4 days.  I don't want to feel like this at night.  I feel slightly cranky wheN I don't feel well at the moment.  I am supposed to be going back to work with a renewed passion for what I do ... with a positive attitude, with a shield against everything that drives me nuts.  This isn't helping.  

I don't want to feel lousy while I'mthere because I'll just want to be at home.  Everyone knows how slow time goes when  you want to be somewhere else!!!! 

It's gonna be OK.  I just seem to be sick at the moment.  Still. For like the fourth month straight ... coming up on 5 months.  Yippee, this is so much fun.  Not.  

So today I learned I have a HIGH chance of getting cancer again, I have a skin infection, I still feel absolutely terrible, and I am a slow packer.  It's been an eye opening day.  haha

Well, I'm gonna take the little puppy to bed.  I'm tired and as I've mentioned a million times ... I feel like crud.  So, it's off to my hot date with my lover, the pillow.  


Tuesday, April 23, 2013

Overwhelmed, much?

I haven't really had a moment to really relish in the completion of treatment.  I can't even say "Yay, I'm cancer free" because going the radiation route, I never really felt like I could at all be compared to those going through chemotherapy.  I almost felt like I shouldn't say I had cancer because there's cancer and then there's CANCER.  I felt like I got it SUPER easy.  Yes, I whined and bitched and moaned (and still am because trust me, the symptoms are not gone) but, I didn't have it THAT bad.  I have my hair, I didn't vomit and get sick everyday.  At no point during this treatment was my health in any jeopardy.  

Yes, I don't feel better.  Yes, there's still something wrong with me that the doctors haven't figured out.   Once the side effects of this radiation is completely gone, I'll know which ones to go back to the doctors with.  I'm still exhausted and fatigued.  My neck hurts and is sunburnt and tender.  My saliva is all clumpy and thick in the back of my throat, my tastebuds have gone wonky, and I have the nastiest taste in my mouth.  I feel horrifically sick at times (not radiation) and sometimes, for like an hour I feel normal! 

But, with the house junk, I haven't had a chance to celebrate being done with radiation.  It's been like standing on top of a bullet train.  It started moving and hasn't stopped and is going SO fast! We didn't expect to find a house on our first day out house hunting.  We didn't expect them to accept our offer.  We didn't expect everything to fall together.  Yes, I've had to jump through SO many hurdles with paperwork and running back and forth to FedEx Kinko's, faxing and copying and scanning.  There's been inspections and negotiations, more faxing and scanning, digging up paperwork ... *sigh*  

Then, there's the exciting news ... yet daunting news at the same time.  We are on track to have keys in hand to that house on May 1st.  That is a week from tomorrow.  We are planning to move that weekend.  We started to pack and got some of the office packed.  That's it.  We didn't want to get too crazy and pack and then have something fall through.  But now, it's on track to close.  It's time to start packing stuff.  

I don't even know where to start.  I mean, I do.  I've been pricing getting some boxes, packing tape and tissue from U-Haul. It wouldn't be so expensive to go get some boxes and such.  I am going to pack the kitchen, clean out the refrigerator, throw out expired spices, etc.  That's my first project in the packing mess.  The bedroom is easy, toss the drawers in the truck (full), toss the stuff on the hangers in the back of the 4runner and go. The bed and dresser will ride in the moving van.  See?  Easy.  It's all the crap that's in cabinets, on shelves, etc.  

Just gotta get started on it.  Maybe tomorrow after my doctor's appointment I'll pick up a handful of large boxes, some bubble wrap and get the cabinets emptied in the kitchen.  Not sure where I'll put the boxes when I'm done!! 

Also, I have to vent ... and this is going to make me sound like a dirty person.  I'm NOT a dirty person.  This is why this distresses me so much.  I'll start by saying this Frontline Plus doesn't work.  I used it, thought maybe it wasn't working but tried again another month.  Then, I was certain it wasn't working because all the animals were scratching.  I switched to Advantage at the beginning of the month on Loki.  Yet, he was still itchy. I got him a dose of Capstar which kills all adult fleas.  However, if there were fleas in the carpet or on the cats he could get them again.  Well, I'm still finding them.  I vacuumed everywhere today, changed the litter box, stripped the bed, vacuumed the cat trees and Loki's blanket.  I dosed the cats with their Advantage (I hadn't bought theirs til I knew it would work).  I have some boxes already pilingup so this vacuuming wasn't as thorough as it could be.  I feel itchy everywhere after finding fleas on the dog last night.  

And that's not all ... this part kept me up most of the night even after getting in bed.   Last night, while watching TV, I felt something on my leg.  I looked down, saw a spot and swiped at it.  When the thing landed on the rug I turned on the flashlight on the iPhone and shone it on it.  UGH!!!!!!!!!!!!!

A TICK!!!!!!!!!!!!!

Loki and I went and walked on the Laguna De Santa Rosa trail last Thursday.  He went off trail at one point and I drug him back, I checked him over for ticks and hadn't felt any. However, this Tick looked like it hadn't fed on anything.  I am thinking the critter had been crawling around in his thick fur and never attached itself.  If it had it would have died because of his flea/tick treatment.  I put the damn thing inside a ziploc bag, inside another ziploc bag and then inside another one and made sure they were all sealed.  It was almost midnight so I couldn't set it on fire ... trust me I would have.  I still feel like my skin is crawling.  

I am so happy the new house has 90% wood floors.  Only the bedrooms are carpeted!!! It's all new inside so I can keep it clean from the beginning instead of battling against an old, moldy house like I live in now.  

Oh I feel so gross.  I hope all this work today helps.  With all the moving and boxes I feel like I can't get the place as clean as I want.  

Yes, if you can't figure it out.  I am overwhelmed by the move, I am overwhelmed by bugs in my house.  I am overwhelmed!!!!!! 

Am I allowed to have a drink yet??  I could sure use one. 

Wednesday, April 17, 2013

Want to know what's annoying?!

My nose is annoying.  It's painful, it's constantly drying out, then it itches, then spontaneously it starts running.  After it runs for like a minute, it suddenly dries back up again.  I spray the saline moisturizing spray up there, or apply a layer of vaseline to the inside.  For a moment, I am able to breathe and move and then it happens again.  It's annoying!  I hate it!  And so far, the only option presented to me for fixing it is cauterizing the blood vessels that are swollen at the tip of my nose.  This can't be the only option.

I don't feel any better.  I don't feel like I'm not doing radiation anymore.  I feel worse.  I wake up with a headache that grows and grows and grows.  I get nauseous, super nauseous like I am going to throw up ... only I don't.  And I pray that I would so that this feeling would go away.  I have a canker sore, or some sore from radiation at theback of my mouth, down near where my tongue hits my throat, so if I get something stuck down between my teeth and lip on the opposite side and try to clear it out with my tongue, I am in extreme pain.  Oh ... and let me tell you about the gastrointestinal problems.

OK, I won't tell you about that part!  Let's just said there is extreme pain, I can't go far from a bathroom and today during my quick journey out to get some things done I utilized the bathroom at FedEx, the bank, and Costco.    TMI?  Yep.  I'm sorry.  However, I'm trying to paint a picture here.

Feeling off is getting SO old.  What do I mean "getting" old ... it's been old for a long time.  I"ve been sick since December!  It's almost May.  And, until the radiation side effects completely wear off I can't chase down the doctors and shake my fist at them to get me fixed!

At least I am back home, errands done, faxes sent, dinner tucked away and ready to be cooked.  I'm about to change into my sweats, and settle in for the night.  I only wore pants because I was going out and about and I am tired of being out and about in sweats.

Oh, don't even get me started on the jeans debacle.  I am so angry at jeans manufacturers!  I bought a pair of jeans in my old fat size (Thank you couch surfing and prednisone) and didn't even realize these jeans DON'T have front pockets!!! Who doesn't make jeans with front pockets?! It looks like there are pockets there.  There is a seam sewn on the front but the pocket doesn't exist!  I USE my pockets.  I carry my keys and cellphone in my pockets when I don't have my purse.  Maybe I'm the only girl that does this but seriously, these jeans are dumb.  And they fit weird.  They look hideous.  Well, it could jsut be the bigger size that depresses me but ... I think they are horrific looking.  They were better in the fitting room.

Time to go change into my comfort and get cozy.  Maybe things in my body will settle down.  I need to pack, I need to get things ready to move May 1st.  I can't be sick anymore!!!!!!!

I hope you have a wonderful night, HAPPY WEDNESDAY! Remember to tell people how you feel about them and hold them close.

Monday, April 15, 2013

In the dark times, there is also light

I woke up this morning with a smile on my face.  It was the last day of radiation.  No more having my face squished in a plastic mask that makes me look like I have a plastic bag over my head.  No more debilitating fatigue.  No more planning my entire day around that mid-day appointment.  I was at the top of the hill and it was smooth sailing from here. 

Then the news came on, and just as I was getting up to leave for my appointment, the breaking news story came on and I, like many others, was rooted in place, mouth agape, heart broken for so many people. 

Marathons are a HUGE deal.  People train for months, if not years, to run in a marathon.  People do multiple marathons in an attempt to qualify to run in the Boston Marathon.  It is one of the hardest to get into.  (Seriously, how does my fat lazy butt know this information?)  Anyway, people plan and train and reaching the finish line is a moment of pure exhilaration, joy, exhaustion, peace ... no one thinks it will be one of terror.  And today, that finishing dream was shattered when someone took it upon themselves to place bombs around the finish line area, taking out spectators, runners, and whoever else could have been nearby. 

As a people, our quiet peace is once again turned upside down.  Yes, even in this horrific economy, the political battles for gay marriage rights, gun control, who's better democrats or republicans ... we still have peace.  We live in a land where we can make our own choices, can decide where our lives are going to take us, speak our minds about anything we want, and live without fear of bombs falling from the sky, suicide bombers crashing into buildings, food becoming something we can only dream about.  We have it very good here in this country.  And, today, that quiet peace was destroyed once again. 

However, something rose from the ashes and burst from the smoke. America's humanity.  Runners who crossed the desecrated finish line after the bombs went off kept running ... running to the nearest hospital to give blood.  Bostonians opened their homes, offering spare bedrooms and couches to out of town runners and families who must remain here during this horrible time.  Restaurants were offering free meals to those affected.  We, as American people, may have differing views, differing religions and beliefs, we may argue and fight often about what we want for our country, but ... we acknowledge that we are all human, we are all Americans (even those people from other countries here for the run ... you are part of our family now).  Something horrible happens, those walls crash down, our hearts burst open and we go to the ends of the earth to help where it is needed.  We pull together as a dysfunctional family. But, a family nonetheless. 

My prayers are filled with pleas for peace and solace for those affected by the tragedy in Boston.  My heart hopes the injured pull through this, yet aches for those who won't be coming home. I'm a ball of emotion and there is no direct connection to what happened.  

During my watching of news coverage, my husband popped in the front door with excellent news for our household.  I never mentioned it here, but we put in an offer on a house on April 7th.  He'd just heard from the broker that all was good with the funding and final approval of our loan, start packing and give notice.  We were moving at the end of the month.  I was overjoyed, yet sad and felt selfish to celebrate something while across this beautiful country there was so much pain. 

But, it was a reminder that life continues to charge on even when it feels like the world has stopped turning.  I will live my life for those that cannot, I will not take a moment of life for granted, I will look at the world through clearer eyes.  

So yes, we are moving. We have almost completely bought a house. I'll be back in Santa Rosa, much closer to work, and a lot more in debt! I'm grateful for my life, I'm grateful to live here in this beautiful country, I'm grateful to be part of a country that clings to one another and does so much for each other when it is needed.  

Like the title says, in dark times ... you must remember that there is also light. While we are angry at whoever did this ... there are those reaching out, caring for and taking people in.  There is beauty in the horror that is happening. 

Tell those around you that you love them, don't waste a moment and put things off for tomorrow.  Life is too short and can be over before you know it.  Don't take anything for granted, even the smallest of things. 

If you're reading this ... I love you.  I am blessed to know you.  Thank you for being a part of my life. 

Monday, April 8, 2013

Cross your fingers

I feel somewhat normal at the moment.  A little tired and weak but not dizzy or nauseous.  I haven't coughed yet today.  I had the same start to my day yesterday and it ended badly.  But, I am hoping this is the start of things looking up.  I have 6 treatments left.  This week and Monday and I am done.  Then, I need to shake off the side effects from the radiation and hope that I feel better than I have.  I see my oncologist for follow up on April 24th.  He will then tell me when I can go back to work. 

I am hoping to go back April 29th, that's the following Monday.  I won't push him to let me back on April 25th.  That's super short notice for people working for me that would be cancelled.  Of course, the following Monday might be super short notice too. I don't know.  I'll let work decide if I need to give them a bit more notice.  I can't tell them til I see the doctor so ... it's kind of out of my hands!  

I would really welcome back my regular routine. It would definitely lift my spirits to feel normal again.  As much as I love being home at night, I'll be happy to be on some kind of routine that gets me moving and out of the house.  When I do get released to go back to work, I'll have to start gradually staying up later so that when I go back to work I'm not ready for bed at 9.  If Dan would stop working down in the city I would not be going to be at 9!   Oh who am I kidding?!  I was asleep on the couch at 8:40 last night.  I was really feeling awful though so that didn't help keep me awake.  

I have errands to run today surrounding my treatment.  The bank, FedEx, and then treatment.  It's not much but I keep having to remind myself so I watch the clock to leave earlier than usual.  If I try to do it afterwards, that's when I usually lose my spark and fade quickly.  I try to do stuff before they zap me.  Everything is on the way.  The bank is across the street and FedEx is on RPX.  Easy as pie. 

Crap, I haven't drank any water today.  I was doing something, and didn't even finish my smoothie.  I drank only about half before I got busy paying bills and such.  I swear sometimes I think I have ADD.  I get distracted so easily and ten forget what I was supposed to be doing.  haha Is it because I'm getting old? No.  I've done this my whole life!  When I would clean my room, I'd find something and then ... that was it.  I wouldn't finish. That little distraction would undoubtedly lead to some other distraction and I'm no longer in my room at all!! 

Well, I need to get my butt into the shower so I better wrap this up before I am further distracted! Thanks for listening to my ramblings.  Or is it reading my ramblings?  I don't know what the blog protocol is for that sentence.  I am sure it'll be pointed out to me.    Who knew I was supposed to write my blog a certain way?  It's mine! Anyway ... look, I'm already distracted from getting off the computer. 

So ... like the title says, cross your fingers that this feeling normal feeling stays.  I want my life back.  Pretty please!! 

Wednesday, April 3, 2013

A New Theory

I've talked with everyone I can talk with. I've seen the final pathology report from Stanford.  I do NOT have Wegener's Granulomatosis.  Which is a great thing!  I do not want to constantly live with a dark cloud hovering in the distance waiting to hang over my head and knock me down.  However, why would anyone say I had something like that in the first place?  I'm telling you ... Doctors do not know everything!!

Stanford says that my granuloma was infectious and they are 99% certain that it is scar tissue from a healing infection like pneumonia.  We are back to pneumonia again.  When I, and my rheumatologist, stated that I am not feeling better and the pneumonia diagnosis was three months ago, almost 4 now.  There's no way I would still be dealing with pneumonia.  All the doctors agree, that possibly the high dosage of unneeded Prenisone that I am now tapering off of could have made me run down (it did make me fatigued) and now my body is withdrawing from it as I come down.  I am to continue with the lowering taper and see if I start to get back some energy (also when radiation is done) and that these symptoms start to subside.

Yesterday, an old one returned a lot worse.  I felt like I was going to pass out.  Hot flash, clammy feeling, and everything seemed darker or ... sharper.  There was no tunnel but everything was weak and I was certain that I was going down.  I ate, still felt it, ate some sugar to see if I needed to spike my blood sugar... no change.  However, I wasn't passing out.  I got to my radiation appointment and told them this straight up.  They got me set up to be zapped and let my doctor know ahead of time.  (I meet with the radiation oncologist every tuesday to check in and see what's up).  When they left the room to start the radiation, everything started to spin badly.  I tried opening my eyes ... no change.  I managed to hang in there til they were done and let them know.  Of course, they knew right away because I was again as pale as can be.

I had my vitals taken, blood pressure was up, pulse was very rapid.  My blood oxygen was good.  They could not get my standing blood pressure.  I met with the doctor and he ordered new blood work to see if I was possibly dehydrated.  I went over to the RP Kaiser offices and had a very hard blood test.  My veins disappeared, they were super teeny and not showing up.  Then, when they got the needle in, the blood was barely coming out.  That was a little scary.  They suggested I drink some fluids as soon as I could.  But, all that blood work came back perfectly normal.  It is the weirdest thing.

I still feel the same way.  I saw my rheumatologist first this morning, he did my vitals, didn't like my pulse and also had a very hard time getting my standing blood pressure.  I explained that my heart skips all over the place for hours ... and that I had worn a Holter Monitor for 24 hours two years ago but it was broken and didn't get any data.  So, he ordered another, I had to have that put on and then talk to my primary doctor, the pulmonologist, my regular oncologist, etc.  I even got to speak to a vasculitis specialist, and everything they were saying was confirmed.

No Wegener's.  Something else weird is going on.   I'll keep pushing them.  But, for now, I need to keep track of how I'm feeling ... get off the Prednisone, get done with Radiation and see if things start to bounce back then.  I am sure as hell hoping they do ... I would love to have everything back to normal again and start to live life.

I'm gonna do what they say ... maybe something will pop up.  But, then again ... wouldn't something have been found in the almost 4 months of this?
My dog is up to no good, I have to get going and figure out what he's doing ....

Monday, April 1, 2013

I'll stand on my head ...

... so that my frown is upside down and looks like a smile.  I'm sorry, I'm just not in a good place right now.  I wish I could elaborate more on why I'm feeling so down in the dumps but, I'll keep it to myself.  It's nothing to do with my health.  Although, if I could go back to work, make more money, feel like a functioning member of society I'd feel a little less in the dumps.  Work was what I did ... I love my job, it didn't feel like a chore.  I don't have that right now.  I keep saying I'll force the doctors to release me back to work and then, something happens and I'm useless on the couch feeling miserable and thankful that I am home and not there where I feel trapped because I don't want to leave them short handed.  I feel helpless. 

We've been trying to figure out a budget and let me tell you, money is never a topic that anyone wants to discuss.  It's never a fun, positive, happy discussion.  It's always an argument.  And, when you aren't bringing in HALF of what you normally do ... it makes a person feel like a giant pile of steaming horseshit (pardon my french).  Anyway, it's not fun.  It's a necessary evil, but not fun.  

I'm supposed to go see the ENT doctor tomorrow.  I keep thinking of just canceling the appointment.  I have pain in my nose and face (sinus area), pressure often behind my eyes, pain and pressure and periods of muffling and ringing in both ears.  However, doctors always seem to want to "see" something.  He's gonna look in my ears and nose and be like "I don't see anything".  No shit, sherlock.  I didn't say I was congested!  I said I FEEL PAIN! Pain I never ever felt in my body before February of 2012.  Pain that's never fully gone away for over a year.  I've been sick every single day since mid-December.  I've started keeping track.  105 days! Lucky me.  Oh ... and let's not forget that during all of my appointments from LAST year, I kept mentioning the lump in my neck that was brushed off constantly and told it would "go away on it's own".  Anyone remember what my neck lump turned out to be?  Yea ... cancer.  But the jerk-off ENT I saw last year was certain it was nothing and treated me like I was wasting his time.  

I know I have to be my own advocate and fight for myself.  But, I keep telling them this and keep getting doctors who are like "I don't see anything so there must be nothing wrong."  I am so tired of that.  So tired of feeling sick, so tired of not having an answer ... and so tired of missing out on life!!! Did I make the point that I'm tired?  

I wish Kaiser was closer.  I don't want to go all the way up there. I'll do it, of course.  I was supposed to see the rheumatologist this week too, but I can't reach his assistant and she was supposed to call me.  I know it'll be easier just to wait until radiation is done and then ... they can't say it's because of radiation or whatever.  

When this is all over, I'm gonna have to do some serious restructuring of how I did things.  I need to get at least 7-8 hours of sleep.  That makes me getting out of bed around 9:30am. That leaves me with 4.5 hours before I have to leave for work.  I'll need to get to the gym, make something healthy for lunch and dinner to bring with me to work etc.  I'll have to manage my schedule, absolutely NO 16hour shifts.  No 14 hour shifts unless I have my entire weekend off.  Oh who am I kidding?!  I am not going to be able to manage my schedule.  I don't want to be doing 12-14-16 hour shifts every day and then working my weekends.  I will have to work through things with a fine toothed comb.  I'll be careful.  I need to be able to sleep.  I have to work out too but, if I have to cook dinner and can't get enough sleep between shifts, the workout will have to be set aside.  

AHHH!  I can't be thinking about all this yet.  YES, I'll be making changes.  I HAVE to.  But, everyone tells me my job is to get better.  So, I'll cross the bridge of how to manage my life when I get there.  I'm nowhere close yet.  It's 8:19PM and I want to go to bed SO bad.  Can you imagine?  I would have to be at work for 4.5 more hours! And it's not like I got up early.  I'm just exhausted, my head hurts, my ears hurt, I am nauseous as hell, and it still feels like I am getting a bear hug from the strongest person on the planet.  

Dancing with the Stars is on ... I love Aly.  It's gotta be so hard to go from stiff, sharp movements of gymnastics to slow, flowy movements of ballroom dancing.  I also love Lisa Vanderpump (she can't dance but she's beautiful), Kellie Pickler and Zendaya Coleman!! I'm also rooting for Andy Dick. I want him to do well. There needs to be a better role model for recovering addicts.  People need to see that people get better.  The other celebrities out there aren't showing that it can be done.  Ahem, Lindsay Lohan.  

Dang, I wanna have that dancer's body ... OK, CAN'T THINK ABOUT THAT RIGHT NOW!!!