You're a professional, what???

I haven't posted in a while...this is for a reason.  I've had a rough couple of weeks, maybe not so much physically - although chemo side effects have not been pleasurable, but emotionally - let's just say I've been a hot mess.  :)  I've had some life changing decisions that needed to be made, and I'm not sure I was quite ready to face actually making them...

At the end of March when we realized the first treatment wasn't working and my disease was progressing I had to actually face the fact that my 2 year saving grace only lasted 4 months and my prognosis suddenly became worse. This was a hard pill to swallow as I thought I had at least 2 years before having to make any difficult decisions.  When I sat down and had "the talk" with Dr. Litton we discussed my disease and working, trying to stay healthy, having treatment, taking care of my family, the whole nine yards.  We discussed going on long term disability and he suggested it may be time to stop working and become a "professional patient."  A professional patient...WHAT???  Why was he saying this?  I'm a professional healthcare worker...I've had a job since I was 8 years old.  At one point in my life I was 8 months pregnant and working almost 2 full time jobs.  I have been a nurse for 23 years taking care of all kinds of patients...patients who are pregnant, new moms, newborns, pediatric patients with every kind of disease you can think of, cute cancer kids for most of my career. I've been a home health nurse, a charge nurse, an assistant nurse manager, a supervisor of nurse coordinators, a nurse care manager.  At 8 years old I was babysitting for neighbors until I turned 16 and worked and McDonalds, Olan Mills, 7-11 and Shopko through high school. When I was in college I worked early mornings cleaning the music building @ Rick's College, taught piano lessons, and worked in the library to get myself through nursing school - which I graduated from in 1993.  I  worked full time as a single mom and went to school full time to earn my Bachelor's degree in 2009.  I have always been proud of myself for being mostly self-sufficient and working hard to make ends meet for me and my 4 children.  I have loved being a nurse and although I haven't worked in pediatric oncology since I was diagnosed in 2013 - it is where I left my heart, and will always be my most favorite job.  Working at Primary Children's Hospital has brought so many special people into my life, patients, parents and coworkers - many of which are still a part of my life.

So...I had a short window of time to apply for long term disability with Mayo Clinic...18 days to get all the paperwork in and for them to review it and make a decision.  They told me it would be a 45 day process.  If they didn't approve it I would still have my job with Intermountain, but wouldn't be eligible for any type of short or long term leave for 1 year. So...I did what I have done a lot the last several years - I said lots of prayers and hoped everything would work out. On exactly the 18th day Mayo let me know I would be approved for long term disability.  This would mean that all my benefits would be covered exactly the same, my kids are still covered under the same insurance and I still retain my life insurance.  I know that this happening is not a coincidence - I can see the Lord's hand in all of it. Even through some of these dark hours, He is still watching out for me, he knows my needs and the need for my kids to be taken care of.

 So, now I guess I'm a professional patient and have been for a couple of weeks.  It seems surreal and I have to figure out what this new title means. I need to find a new normal and a way to stay busy so I don't lose my mind.  I saw Dr. Litton again on Tuesday (2 days ago) and told him I'm not very good at being a professional patient so it would be fine for him to pull out his magic bullet, or pill or magic wand that will fix all of this so things can go back to normal.  I'm pretty sure he is going to get sick of seeing me so much, but I will never get sick of seeing him.  He is pretty much my favorite doctor - of all time.

My breakfast...gag

So, I have finished my first round of Xeloda.  Here is what I think of it so far...

Pros:
It is a pill
It better be killing my cancer
I only have to take it for 2 weeks and then have a glorious 7 days off.
I can't think of any other pros right now...

Cons:
My nausea is very unpredictable - even with consistent anti-nausea meds.  Some days I'm fine, some days I feel like laying in bed all day and just wanting to throw up to feel better.
It's more pills to take - I think I'm starting to develop a pill swallowing aversion - ugh...I used to be able to take pills without problems but now I gag every time I do - I remember watching my cute cancer kids do the same thing.
It makes my mouth super tender - but yay for no mouth sores this round (tiny miracles).
My feet are super sore...I liken it to "stepping on a lego"  If you have ever stepped on a lego, or a sharp rock - this is what it feels like on the entire surface of both of my feet when I walk.  OUCH!!
I find myself short tempered, grumpy, impatient and intolerant of things I can usually handle.  I had to apologize a couple of times for being mean...I hate that because I'm not a mean person - most days.

I'm still having a difficult time breathing.  Walking short distances makes my breathing sound like I ran a marathon.  I still cough a lot - although I'm trying to talk myself into thinking that it is getting a little better.  So not being able to breathe or walk bought me these:

The gal at the DMV said "this should make your life a little easier" as she handed them to me.  Tears immediately filled my eyes, as I would rather not have to be in the circumstance to need these.  I wish I could get those darn tears under control - they just spring up out of nowhere sometimes.  The words that stand out to me in this picture are "permanent" and "expires" - reminding me that my condition is permanent and hopefully I won't expire before this placard does.

Today has actually been a better day - my feet hurt less and I wasn't sick at all - I was able to run some errands and not feel like I was a total unproductive sloth.

I'm looking forward to the next 5 days being off chemo and feeling more normal - I'm hoping to be able to go the tulip festival on Saturday pending good weather.  I'm thankful for wonderful friends and family that keep checking in on me to make sure I have everything I need and see if there is anything they can do to help.  The world is full of amazing people - God keeps putting them in my path reminding me that I'm not alone in this battle.  I am one blessed momma "getting by with a little help from my friends."

Be brave, my heart. Have courage, my soul.

Tiffany