A Summer Month of Life Changes

Blog time. So much has happened since my last entry. Many life changes. 

I busted out of Methodist Hospital a couple of days early, due to the newest member of my medical team, "Dr. Blue Cross Blue Shield".  He told me I was well enough to leave.  It kind of freaked me out knowing I had never gone to his office to see him before, and now he was telling me it was time to go home.  I was excited to get home, but I was upset at how it happened, that AN INSURANCE company told me it was time to go, instead of my very own doctor who knows my case from top to bottom.  

My family, mostly my kids Ashlee and Nathan, did some research and located an awesome oncologist at the Warren Buffet Cancer Center at UNMC whose name is Nicole Shonka.  She specializes in the kind of cancer that I have.  I went to see her last week for the first time and I loved her.  She is a very young, kind, gentle lady, with a resume like you wouldn't believe.  I am so happy that my kids researched and found this woman to be my oncologist.  Not that I ever WANTED an oncologist...  But if I have to have one, I feel perfectly happy to have Dr. Shonka by my side.  Because, to be honest, I would much rather say I didn't have to have an oncologist by my side.  But now that I need one, I am glad I have her. 

I met with her last week and she put my mind at ease on several questions that I had, some of which were, "Will treatment make me sick?  Will treatment make my hair fall out?  Will I lose my eyebrows?  Will I lose my eyelashes??".  I know these things are not as important as life itself, but they are important to a 57 year old lady who tries her hardest to look her best when she leaves the house.  That sounds like it wouldn't be easy to do if you don't have any hair. 

The word "chemotherapy" really scared me at first.  "Radiation" didn't sound as scary to me.  But in my situation it turns out it is gonna be the exact opposite - it is going to be radiation that is gonna kick my butt, make me tired, and make my hair fall out in little patches.  But the good news is I won't lose my eyebrows or eyelashes.  And if there is anything good about losing patches of hair, the fact that I won't lose my brows and lashes makes me a little bit excited.  

I go to my first appointment tomorrow to see the radiologist and get fitted for "my mask".  It is going to be a creepy, Anthony Hopkins "Silence of the Lambs" mask.  I will never be able to watch that damn movie again and not think of that damn mask, especially listening to him say, "Faaava beans and chianti".  Said mask will be up for auction in about six weeks - just in time for Halloween!!  You are sure to win a contest if you wear it!  My sister and I are cracking up as I write this, thinking about FAAAVA BEANS...

This afternoon my whole family got together and got family photos taken.  I have missed family photos the last couple of years due to busy scheduling and new babies coming.  I never got around to getting my annual family photos with my four favorite little babies.  Today not only was I with my four favorite little babies, I was with my favorite family in the whole wide world.  So be on the look out!  In your December mail you will receive your annual Nettie Christmas card.  And if you happen to be on my list, you are a very special person in my life.  One of my favorite little cousins, Brenda Lee, has always been the one to take my photos for me.  She was there today to take over 600 pictures that will take me until December to go through and pick out the ones I want to add to my card.  Thank you so much Brenda - love you.  I can't wait to see how they turned out.  All clothing coordinated around one little outfit I picked up for Tallis a couple of months ago, thinking, "Oh, this would make a cute outfit for a Christmas card".  The whole family rallied around and coordinated clothes.  We had a fun day of snapping photos, even with Tate and Diesel included (the family dogs).  It was a crazy time but it will be well worth it when we see the photos come back.

Some other exciting news: I am going to be selling my house, which I thought about doing the last couple of years anyway, but now the time is perfect.  Not only am I selling MY house, but my daughter Ashlee and her husband Pete are going to be selling their house also.  The five of us will be moving into a house together so that I have someone with me at all times.  The most exciting part of all is that the house is going to be very near the school where I work and the kids go, by Pete's work, by the interstate so getting to UNMC for treatment will be handy, and close to my son Nathan and Lyndsey and their family.  This may sound sudden, but I have been thinking of selling my house for a couple of years so it is a big relief off of my shoulders actually.  I know this may sound like a big sacrifice for Ashlee and her family but it just seems like the right thing to do, and everyone is on board.  I have not actually seen the house yet - I will go see it tomorrow for the first time.  I have seen it online and through FaceTime.  It looks like a nice place for a grandma to cozy up with her four grandkids whenever I feel the need.  Ashlee informs me that the walk-in closet is twice the size of the one I have now, and that in itself makes a girl like me get excited.  

When I tell my stories I like to use a lot of expression in my voice.  In my opinion, it makes the stories sound better.  But since my surgery I feel like my voice is monotone with no expression and it drives me CRAAAAZY.  I feel like my voice does not sound very exciting when I hear myself talk.  But the things that I have talked about tonight are exciting things for me, and I wish that I could express that in my voice.  I hope I get my expression back someday so you can hear the excitement in my voice when I tell my stories (and they ARE my stories, and I DO love telling them!).  And if you know me even in the tiniest way possible, you have heard at least one of my stories (which, by the way, are all true).

I am not the kind of girl that has to have the fanciest of everything, because we all know Nettie loves a good bargain.  But I did receive my very first pair of Kate Spade pajamas while I was in the hospital.  I love them, and they are exactly like something I would pick out myself (if I could afford them).  They are Kate Spade pajamas that I considered wearing as an outfit because I love them so much - bright and colorful and they made me hungry for a POPSICLE!  (I ate my popsicle as I was sporting my new fancy pjs!)

I told my PT guy if he sent me home with a 4 pronged cane with 4 tennis balls on the bottom of it, with my name engraved on it, he would see a Nettie he hadn't seen before, and it wouldn't be good...  I am not knocking anyone who has to carry a cane like that, I am just saying I didn't want mine to be like that.  I wanted mine to be pretty, blingy, and special.  When I carry my cane I want people to say, "Hey!  Look at that lady's cane!" or "I love your cane!".  Same reason why I drive an orange car...  Sooo, some friends of mine, Becky and Debbie, came over the night I got booted out of the hospital by Dr. Blue Cross Blue Shield.  I didn't have a cane to bring home, and I need a cane because I tire easily.  Needless to say, my cane does not have 4 tennis balls.  It has a LOT of bling and I get noticed wherever I go.  I am the envy of all of the silver haired ladies out there carrying canes, and I love it!  And not only do I have a special cane, Debbie and Becky also delivered a special little gift - a transport wheelchair to get me from point A to point B on days when I am feeling very weak.  I took my first outing in it yesterday and it was heavenly.  I would just like to say THANK YOU to the generous donor who felt it in her heart to gift me such an amazing gift.  You don't know how much that meant to me.  

A group of friends have come together and told me they would like to plan a benefit in my honor (NOT my memory).  That blew me away.  Like I mentioned before, a month ago I was floating in a pink flamingo drinking a margarita, and now I am thinking of a benefit in my honor.  How crazy is that?  Tentatively the benefit will be this fall after my 6 weeks of chemotherapy and radiation, so possibly in November sometime, date to be determined.  The theme is going to be "Sketti for Nettie".  Whoever thought so many words rhymed with NETTIE, but sketti is one of 'em.  If you have any ideas or suggestions about the benefit please comment here and I will pass them on.  If you have any ideas on silent auction items such as art pieces, photography sessions, salon services, ANYTHING that people would love to bid on, please let me know.  There may even be "Pedis for Nettie"!  Also, if you want to order a "Kick Some Mass" "Team Nettie" t-shirt there are approximately 100 people sporting them or waiting for them to arrive!  So get your t-shirts now before they are sold out, because I may need some help kickin' this mass (and because I don't plan on doing this again) (but I will if I have to...)!

I CAN:

- Get through my helmet fitting tomorrow

- Move from my home I have lived in 8 years, even though I love it

- Have more visitors come visit me, because that is my most favorite part of my days

- I CAN AND WILL lend out my helmet as soon as I am finished with it

- Be a good example of being a survivor of Glioblastoma

- I can survive longer than the odds say that I can

- Keep a positive attitude

- Laugh about a lot of things that I couldn't laugh about a couple of weeks ago

- Get off of steroids - I took my last one yesterday (but that doesn't mean I have stopped eating...)

- Love my four babies just as much today as I will 20 years from now

I CAN'T:

- Think of fava beans without laughing and having tears roll out my eyes

- Not live life to the fullest

- Not go to Younkers on Tuesday, because it closes for good the end of this month

- Believe all of the people that have helped me this last month - the awful month of August

- Imagine being on this journey without my kids and their families or my sissies (FYI: we call each other "sissy" because we sort of hate that word, it is inside joke)