Monday, June 27, 2016

Whooosh, there went the time.

Time has a way of slipping past us at an alarming rate, have you noticed that?  Goodness, how is it almost July?  And, on that note, what the heck have I been doing with myself during all these many months?

So many things.  Have I taken control of my bad eating and lost some weight?  Oh you joker you.  Nope.  Of course not. I have, however, taken control of my health and finally got my meds changed to hopefully something that works to make me feel better. 

I chose Rituxan (Rituximab), aka RTX.  It's a chemotherapy drug commonly used to treat Lymphoma. Yes, I said that correct.  Chemotherapy.  Chemo for short!

You might ask yourself who would voluntarily accept chemo when they don't have cancer? Well, there are a variety of autoimmune conditions that use chemo for treatment and maintenance drugs. Mine happens to be one of them and it is rather common.  This is a drug mostly used in maintenance but has also done wonders for people in being able to get their disease under control.  It is higher up on the spectrum of their strenths. It's not the BIG BIG guns but it's up there.  It's got some pretty serious, sometimes but rarely life threatening in nature, but really ... if you want to get right down to it, doesn't everything?   Driving or being in a car make you more likely to have a serious side effect like major injury or death.  

Anyway, I digress ...

I went for my first infusion on June 3rd. I got all settled up in my lil chair and was hooked up to an IV and we were rolling.  Until I felt like I wanted to take a wire brush (or a bottle brush) and jam it down my throat because it was very itchy.  So they stopped my infusion for a half hour.  The feeling passed and we were on our way again.  Uh oh ... get me that bottle brush!!! I needed to be given IV Benadryl instead.  Cue the loopiness.  Wooooooo.
Monica was visiting me so she took off and I laid back in the chair and tried to doze.  It isn't easy with all the talking and the fact that I'd never done this before and didn't really want to just give myself over to lying there asleep in a room full of people.

The staff was VERY nice.  Everyone was wonderful.  When I was done, I headed home feeling tired from the Benadryl.  Until a few hours later when suddenly I felt like I was getting the flu.  I was weak, a lil nauseous and dizzy as heck.  I just remained on the couch to rest and didn't do anything.  I'd planned ahead and already had the day off planned.

Well, I needed two of them.  I was in bad shape.  Akin to a terrible flu.  But, it passed.  I was still dizzy for several days until the week before the second one where it finally seemed to subside a little.

Infusion # 2 was on June 17th.  I knew what to expect this time so I was much more relaxed.  It was a completely different set of nurses than the last time so I was a little bummed  because my main nurse, David, was such a riot last time and the medical assistant was hoping I would have a pretty lady deputy friend to introduce her too.  It was adorable, really.  So this crew was different.  I laid there and provided my arm and subjected myself to some very uncomfortable sticks while she tried to find a vein.  She switched arms and it was still a battle.  Finally it was in and she informed me I would be getting IV Benadryl before the medication since it was listed I had reactions the time before.  Great.

Shortly after she started the meds, something felt off.  There was pain in my arm below where the IV was.  It wasn't bad but I definitely noticed.  Dan saw me wince and wanted to know what was wrong.  I told him it felt weird and a lil painful but it was probably fine. 


The pain continued to grow and my arm was turning red.  Dan stared at me, waiting for me to admit defeat and call for the nurse (this is really a stubborn trait I need to work on).  He went to get someone and a different nurse than the IV poker came over and looked at it.  The IV poker lady came over and instantly was like "I had good blood return, there's nothing wrong with the placement".  So the other nurse grabbed a warm blanket and wrapped my arm, explaining that the medicine is cold and the vein was probably spasming, causing pain.  The heat seemed to help ... until the blanket cooled off and then it happened again.  More wrapping ... and so on and so forth it went that way for the 5 hours while I was there. 

Went home, felt a little worse than last time afterwards and just laid low again.  Saturday, I never left my bedroom.  I felt terrible.  My body couldn't do anything.  NO energy.  When I was on my feet I felt like I was going to collapse.  It was like a baby Giraffe trying to get up after just being born.  My legs were not going to carry my fat body. The room spun whenever I was not in a prone position and my head throbbed like you wouldn't believe.  I knew almost instantly that I wouldn't make it into work Sunday. So, I stayed home for another day.  Sunday night I was headed to bed, after having to call in sick for Monday as well, my head hurt SO bad.  I've never felt pain like that before. The pain traveled down into my neck and I couldn't turn my head.  Awful.

I was started to be a little scared and thought maybe a trip to the ER was warranted.  I took one of my pain pills and a meltonin and crawled into bed.  Thankfully, I was out cold.

Long story short, I didn't make it back to work until Thursday.  Tuesday afternoon found me on my knees in the Raley's bathroom tossing my lunch. My doctor wasn't entirely comfortable with me returning to work so I stayed home Wednesday and Thursday was better than I had been but still only about 65%

As of now, Monday, 10 days after the second infusion, I feel decent.  I am tired.  Beyond belief tired but that's about the worst of how I feel.  Which, I will take because when you regularly work 80 hour weeks, tired is a feeling that is sort of normal. I know HOW to deal with tired. I can fix tired. 

Now, I wait and see if this magic medicine makes the other stuff disappear for awhile. This should finally bring me the very much desired remission that I have been craving.  Then, I won't have to constantly be thinking about what I am feeling or going to do about said feelings. 

Instead, since this is a stronger immune suppressant, I get to practice the mean face I am going to give people who come to work sick.  A cold to you is worse for me ... so, be kind and stay home if you have germs. I am out of sick time and will blast through my vacation and comp time that's there for me to have regular fun days off ... because I am fighting back against a bug you couldn't be bothered to take a day to fight off. 

So that's a brief catch up to where I am now.  Except for the Hawaii trip, that was in there at the end of March. It was fun and I cannot wait to go back.  I'll post more about it later. 

Saturday, March 12, 2016

Next Up: Another GIANT Leap of Faith.

Remember that journey of a thousand miles I spoke of a few months back? I am about to take the second step of that thousand mile journey. Step one was getting on a plane for the first time for a super quick and speedy journey down to Orange County and back. Step two will be marching myself onto a much bigger plane, for a much longer flight, to the sun and sandy, palm tree lined beaches of Hawaii.

An opportunity presented itself and no person in their right mind would have said no. My beautiful stepmother who has been a mother to me longer than my own mother is taking me to Hawaii. It was supposed to be a trip with my baby brother and I but he was a dork, hurt himself, and had surgery yesterday to repair it.  SO, now it's a girls trip. I agreed to go ... and then I've been battling that tiny voice of anxiety in my head.  "A longer flight!? Over the ocean?! What are you thinking?!"

My inner voice is VERY dramatic. She has a lot of flair.  She's also incredibly neurotic and an anxious little monster. She's always talking. Always. I can't get her to shut up.  For the last few months she's been droning on about this. Wondering about turbulence and flying over the ocean and being in a metal tube for that long and having to use a tiny box of a bathroom on an airplane when your body is the shape of a manatee. 

Anyway, I am going to Hawaii.  Guess when that happens?

Eight days. 8. That's one day over a week. I fly out Sunday, March 20th, at 0700am.  So, tomorrow morning means I have one whole week before this happens.

Cue inner freak out right? Well, yes. Of course, this is me we are talking about. Except, there's the part of me that is SUPER excited to get on a plane again.  I absolutely loved flying last time but that doesn't mean my inner voice is happy about this.
It's like my brain is split in two. Half of me is like "Woo hooooo!!! A plane! Traveling! Adventure! Beaches, Palm Trees, Umbrella drinks ... oh my!!!" While the other side is like "no. I can't do this. It's scary. You want me to fly over the ocean?! Are you insane?!"

I have always wanted to go on a tropical vacation. I drool over those pictures of people laying by a gorgeous, infinitesimal blue sea that spreads out for miles, a drink in their hand with a cute little umbrella or wedge of pineapple at the top, and the sun. Glorious warm sun.  I've wanted to do that forever.  I am actually going to do it.  YAY.

So why am I not like jittery excited in my chair, crossing days off on the calendar? Well .. there's that other part that speaks up every now and then.

I'm a cow. A manatee if you will. A whale? No. Manatees are adorable so I'll stick with manatee. I heard about the trip and was so sure I would get my eating in check, work out a bunch and be MUCH smaller than I am right now when I left. Instead? I've gained 10 lbs and absolutely cannot stand the person I see in the mirror. I can find no redeeming qualities in her.  I am SO mad at myself. There aren't words. There's no excuse. I let myself fall to my whims. I let myself be led astray whether it be from stress, lack of sleep, sheer desire for something yummy, lack of desire to get up and move.  I did this to myself. There is NO excuse for it. I know how to get in shape. I know what to do, what to eat and you know what? I didn't do it.

I will be headed off to Hawaii ... as a manatee. It is what it is. But, it limits what I can do when I get there and my adventures, much smaller, in shape brother isn't going .... the person who could do all the things my mom wants to do without question.  There would be no weighing him to let him do certain things. No public shame there.   It makes me feel like I am going to ruin her trip because I can't do certain things that she can.   Maybe it's the neurotic voice talking but ... it is true.

I digress.  What I was saying when this blog all began was that I am taking that second step. A step pulling me closer to being able to board a Virgin Atlantic or British Airways plane and jetting off to my dream home, the land I swoon over every chance I get, the land of sexy accents and British men, the Tower Bridge, the Tower of London, and Buckingham Palace. A place I can see the Union Jack hanging from every pole.

Ahhhh ... England.

As scared as I am, I know that once again, I need to do this. If I don't ... there will never be a Nikki in England. I may just go live there after I retire.  Follow in Lisa's footsteps and just go ... there's an entire world out there. A world full of history and wonders and everything I need in my life.

But first ... Hawaii.