Wednesday, September 17, 2014

Perspective y'all

Hello peeps! I shall keep this very short. What do you do when you have set backs? Well, if you're me ya freak out!! Insurance benefits for some areas run out, hospital bills begin to climb, you panic about finding more work (yup. Did all that the last couple days.)

...and then you choose to stop freaking out when someone says something so simple, a something that all your friends have been repeating but just this once because it comes from a new source you really hear it!

I say:  "Our bills have so many zeros I'm just going to pay 20 and month on everything until I die and then they can just take what's left"

My teaching partner Sarah says, "you'll pay and it will be ok because it's such a good deal to get to keep Mark for so cheap" (or something close to that) :)

Boom! Mind blown! I've heard this a million times in various forms from my besties and other pals but Sarah and I have just begun to cultivate our friendship over the last few weeks as we've taught and for some reason that answer just actually sank in this time because I wasn't ready for it and nobody had put it quite that way! Yup! He's totally worth a monthly payment! In fact he's freakin priceless!! Thanks to all of you that remind me of the big picture:)

Lots of love,

Tuesday, September 9, 2014

Where the heck have I been?

Weird title I know.  So why haven't I blogged this whole entire year?  The real reason? Hang in... this is a long one and not all of it's pretty.

Honestly? Truthfully?  I'm sure most of you that read this are very aware that last October my husband was diagnosed with Acute Lymphoblastic Leukemia.  He is an AMAZING fighter and he was in remission by November and came through 8 rounds of chemo beautifully.  In May he had a stem cell bone marrow transplant and is now about 120 days out.  Throughout this process he has had the best attitude and has remained a great example of what it means to fight for your life with grace.  He has trusted in and heard from God without fail and knows that other things are meant for him.  If you want to know what God sounds like, he's happy to tell the story.  This illness changed fundamental things about who he is and what he had planned for himself while not changing him at all. (Yes I know that makes no sense but trust me it's true.  You can change and not change at the same time.) God indeed works in mysterious and amazing ways.

So back to the why the blog was no bueno part...

It was important for me to stay positive too through all this, but not always easy.  We've gotten a lot of compliments on our upbeat attitude and positivity.  So why not blog and share that with the world?  Mostly, because sometimes I felt like the perpatrator of a great sham.  Because at night when I would have time to type, I also had plenty of time to think about exactly how terrified I've been this whole time.... how cheated I felt to have FINALLY found the man I was meant to marry, to FINALLY have a daughter of my own and two step kids any parent would kill for, to FINALLY both have jobs we loved and then to be kicked in the teeth by stupid cancer.  All of it was always so close to disappearing and sometimes it was HARD to be positive.  So, I cried a lot, I tried to hide all my fears from Mark, and I prayed a lot - feeling that I must be a huge disappointment to God who devotes a fair amount of space in the Bible to overcoming fear and I seemed incapable of making that happen.  I genuinely thought about blogging several times, but every thing I thought to type sounded bitter, or pitiful, or like pleas for attention.  So instead, I saved those rants for just a few friends and spared the rest of you.  I did my best to be positive and while I had my slips, believe me, as overemotional as I am, I still managed to hide most of my sheer panic from most people.

The truth is I hope we were and are an inspiration to others!  Admitting to not being superwoman is not easy.  It was important to me not to slip up if I could help it and to show people that you can keep moving when you need to.  Mark really should be an inspiration to people for real...and I'd really like to be.  But the truth is, being the caregiver is hard.  REALLY REALLY hard.  I thought I had an inkling as I'd done this once with my sister.  And that was HARD but a different kind of hard than going through it with your spouse.  The fear of being alone or losing your partner can be a special kind of crippling, especially with a small child. That part I did my best with as I could.  The need to fix it and the desperate need to know everything about their care and at the same time the need to stay blissfully ignorant so you aren't scared pooless in front of them the whole time are always at war.  So what do you do?  You project.

 I whined about my house instead of Mark's illness.  I whined about paperwork instead of my fear.  I covered.  As a result, little things became great big things.  Some people got it, some people thought I was nuts. And EVERY single time I took a minute to wallow about the cancer, I imagined I could FEEL people going, "Ugh. Enough of the depressing crap, we are over it so move along." and I'd hate myself for saying anything. (That still happens sometimes now by the way. Argh!)

What really got to me is what I'm dealing with now... Jamie completely disappeared.  I'm sure other spouse caregivers can relate.  Everyone asks about your spouse and you recount all of their updates and doctor's notes 50 times a day and you don't want to mind because you are so flattered to have so many people care.  Really, honestly you're flattered and humbled and desperate for them to keep asking... but you're tired. When you have a one year old this problem is compounded by everyone immediately following up with asking about how she is taking all of this.  About 1 in 10 to 1in 15 times someone has time to ask how you are doing.  This is all perfectly normal and perfectly expected...               ...but it's not easy.

Then there's the dwindling social life. People know how busy you are but you think and feel like they are just tired of hearing about one year olds and cancer and so you don't get invited to as much stuff.  You realize most people aren't doing it on purpose but you see a genuine shift in your social calendar, real or imagined, and when you love to be social that's hard too.  People joke less with you because they don't know yet if it's a good cancer day or a bad cancer day, and again, most of the time people do this without knowing.

You, as the caregiver, are invisible...or at least you begin to feel that way.  And no one does it on purpose! Let me say that again.  I know that no person or thing made me feel invisible on purpose... at all... period.  The amazing people in our lives CARE so much and helped me SOOOOOO much!!! They didn't forget to ask about me, in all fairness I'm the least in the line up, and rightfully so, but after a year it has led to quite the identity crisis. 

Identity crisis?  Really?  I know it seems far fetched but it's true.  Ellie was 9 months old when Mark got sick.  I'd barely adjusted to being a mom and was still accepting I wasn't the spoiled rotten princess anymore.  The position had been filled.  :) lol!  But it progressively got worse as time went on.  I stopped being Jamie in my own head and started being Ellie's mom and Mark's wife.  Everytime I'd get passed over for a lunch invite or left out of a group activity, or people skipped asking Mark and I to join them out, I began to take it personally.  I felt like I wasn't good enough anymore.  I still feel that way for more reasons than one and they are all in my head... at least I hope they are.  haha! 

I haven't put on much weight this last year but my shape has changed and I feel awful all the time.  My bad feet are limiting my workouts and I feel ugly and undesirable.  I feel lost.  Somewhere this year I finally realized that I'm not the cool, young, hip teacher anymore.  I feel like I'm the crochety, middle aged teacher who puts up with less crap so the kids don't warm up to me in the same way with the same speed and that added to the hard.  Again, my co-workers and students assure this is all in my head but I swear I feel a shift.  I haven't had time or money for clothes, pedicures, the spa, or makeup not to mention the time or energy to eat well, so I feel run down and not very put together.   So that will be what I work on in the next round of blogs and coming months.  I can't fix Jamie until I know who the heck she is outside of being Ellie's mom and Mark's wife. I do know I'm not crazy about right now Jamie.  I want to go back to not giving a rip who else liked me or if I was being included or left out.  That is my challenge.  That Jamie from a couple of years ago liked herself, felt good, and got stuff done.   I miss her. 

This wasn't an easy blog to write.  It's hard to admit your shortcomings but I have high hopes that if I do it, I may help others who get where I'm coming from whether they are a caregiver or not.  I am fine the way I am with room to be better than fine.  My first mission is to say that until I remember it and maybe even believe it.  :) I know Jamie is someone good to know, I just need to meet her again and introduce her to everyone else.  In the meantime, I want to be healthier for Ellie so less stress (Yeah right... I teach high school but it's a lovely thought) and more veggies here I come!!! Thank you to all of you for your support this year.   You have been wonderful and loved all over us and we could never say thank you enough!!! :)   As always thanks for reading.  :)

Thursday, January 2, 2014

It's Not a Resolution

Hi everyone!!

So Mark and I were watching news shows and such on New Year's Day and saw the most interesting of ideas come across the screen.  It discussed the idea of choosing a word that you will focus on for the year.  You keep that word at the front of your thoughts as much as possible.  Hang up pictures of it if you like.  Instead of promising yourself you can do something in the form of a resolution you give yourself a direction. 

Needless to say, I freakin LOVED this idea!!! No resolution I can screw up, but still a nice fresh focus for the year that makes no promises that I have to keep just something to keep my eye on. Did I say I loved this idea because I REALLY mean I love it.  I can't wait to make myself some signs I can hang up to keep my focus! 

So what word did I pick you ask? (What do you mean you didn't ask? Who cares, I'm telling you anyway so Nah!)


Yup.  Faith.  Seems like such a simple word but I really need to focus on it!  You see as a Type A worry wart my brain lives in worst case scenario mode and I'm always planning for 'when it doesn't work out' instead of believing with all my heart that it will.  There are so many ways faith plays out in my life.  Of course there's the obvious - working on my faith in God.  I need to believe more fully that He knows the plans He has made for me and I need to quit freakin trying so hard to do it my way. But faith has so many places it needs to be directed.  I need to have faith in myself.  I am always second guessing my self-worth and my decisions and I really want to work on that.  I need to believe I'm pretty awesome and that I can make the changes I want to make because I'm a tough cookie.  Getting healthier takes faith in a plan.  If I eliminate the bad and harness the good I have to believe that I can make these changes stick.  I am grateful to have doctors for Mark that have never given us a reason not to have faith in them so I want to keep that belief that they are making the best decisions they can in regards to his care.  It gives me a peace and makes me feel a lot better.  And I really need to have faith that we can and will make it through the next 12 months and manage to keep the house, cars, and our amazing daycare. Here's why that's where I need the most faith:

Mark is doing AMAZINGLY well!!! But you can't just magic away A.L.L. It's a marathon and not a sprint and we are getting ready for the uphill leg.  Mark will have to finish all 8 rounds of chemo before transplant.  That means we are doing chemo until about April.  I need to have faith that this is the course that will keep him on the road to permanent recovery.  Once chemo is done, they will begin heavy contact and testing with the matches they've found and we will move into the transplant phase.  I need to have faith that we will get that good match and get him through this process.  Once he has had the transplant he will be in the hospital for about a month and then he'll have to live within five miles of Vandy for 100 days.  100 days.  I need to have faith that I can get things under control enough by then that we can do without any secondary income for 6 months to a year.  Right now that's not even kind of a possibility but I have to have faith that God will open a door and we will figure it out. I need to have faith that I can make a two household lifestyle work for us for that time period.  I need to make this easy on my husband and easy on Ellie as much as I am able to.   I need to have faith in my abilites to be tough about our budget. I have faith that God will heal Mark, now I just need to have faith in the process. 

So the word of the day is faith people.  If you see me losing it please set me straight!  Hand me a little note with that word on it, break into a musical number, or something else if you can think of it.  I can't tell all of you how much your support has meant to my little family through all of this!  It's just been wonderful and awe inspiring.  They say when you go through a crisis you find out who your friends are.  I have to say that we have been on the positive side of that.  We've had a few disappear but we have learned that we have more friends who we can lean on than we could have EVER imagined possible. I will spend the rest of my days doing everything I can to repay those kindnesses whenever I'm offered an opportunity within my means.  Have faith in that! (you like what I did there?) 

PS: Now in the meantime if any of you have an extra 25 grand laying around you won't ever need that I could use to pay off the cars, credit cards, etc so all I have left is the monthly bills and mortgage that would be awesome!! LOL!!! If only the dang stuff grew on trees right??

PSS:  If you read all the times I typed faith in this blog and managed to not have the song by George Michael stuck in your head... you do now!  Muahahahahaha!  You're welcome!

Happy New Year!!!