Not quite the big one....

You need to know this and I am the one to tell you. I have pondered on it too much probably and thought... "Just spell it out".






You see, like I told you a little while back, I am not doing anymore chemo. My Oncologist... well, that is what he does, he gives you chemo. If he isn't giving you chemo you need to go to another doctor. In my particular stage of illness, that means Hospice. Now I know that sounds like putting the final nail in the coffin but not necessarily. They do work with a lot of people at their very end of life, 3 or 4 day gig and we have probably all been there. But this is a little different.

First of all, they all came and looked me over and asked what it was I thought they could do for me? Weird, I know, but after about the third person said something like that, I realized that even now, I don't look sick. I don't look the way I should look with the level of illness I have. I am just so purdy.
They seem to think I have a ways to go.
My numbers... short for CA-125 tumor marker numbers to determine the amount of growth...
have gone through the roof at 20,000.

I have hair! That certainly helps maintain some semblance of normalcy. 



The last chemo I did, I went every day for a week. At the end of the 2nd week, all my gray hair fell out. I said that I told God I didn't want anymore gray hair and he answered my prayers. Gotta love that sense of humor don't you? Now my gray hair is all growing back and it looks almost normal.


Charlie is driving to N.C. to pick up my oldest grandchildren, Griffin and Alana... 12 and 8. They are going to stay with us for as long as I can keep them here. My only real problem is just getting so tired. And they aren't really used to me being tired. They are more used to me and Pop's being 12.
We had made all sorts of plans of things to do with them while they are here but now, I just want to look at their faces and try to picture them all grown and beautiful. They are so lovey dovey too and who doesn't need that? We will pile up in our bed with all kinds of junk food and watch movies and play games. It will be awesome.

4 yrs. ago at Nick and Kristen's wedding. I think I was boo-hooing.

They were so little!! And adorable!!

Anyway, I just needed to update you and I didn't want to. Sometimes this blog is so hard to write. Coupled with the fact that I am still trying to work and write their blog... I am double blogging. LOL!  I have got to quit work soon. Priorities.





I love you all.
I know that last blog about my elephant was a wild blog. People really responded. I hope I didn't come off too mean or mad or anything.






Try to understand, please... I can't answer the phone each time it rings.
I can't reply to all emails.
I can go to the door each time someone knocks.
I really can't deal with extra company.
I always want to... but I can't.

It is time for me to be selfish. All selfishness is not bad. We should all be a little more selfish.

At this time, I want to be with my husband and close family. I hope you can understand.

I will try to keep writing as often as possible but my focus is to relax and be happy and enjoy my riches.





Oh, and you won't believe this one.

You know, my the son and daughter in law that have the 3 year old and just had twins in January......


 they are having another baby.
















Stunned and thrilled.

My 8th grandchild.

Special Providence.




















I pray for peace in your heart, love in your every act, patience, understanding and hope for all your tomorrows.















   

 

What can you do?

As I progress through this illness, this stage in my life... things change and I have to adapt to the changes. Now that I have gotten this far, I can look back and see how I felt and acted in the beginning. I see other new patients and see myself a couple of years ago, determined to make myself well. Eat right, exercise, love myself and make myself whole, filled with the white light and at one with God. That... and a bunch of chemo should do the trick.

Now that I have a few years under my belt, I have learned that while that is all well and good and how much the positive attitude helps, I realize that these are all just stepping stones in my life. These stepping stones are the little lessons I have to learn. And each patient has the same stones. I am progressing much the same as the rest of the patients progress. Each day I try to hold onto the idea that I can make myself better and I do, to a degree. But the bottom line is there is no cure.




 Okay, this is the Cure... but they were a band in the 80's that I have no clue what happened to.








Every morning when I wake up I am faced with another day of cancer. There might be a nano second of not thinking about it, but there it is, in the middle of the bed... a big old elephant.


"Good morning, Billie. You didn't forget about me did you?"

"No you big fat ass elephant. Well, just for a moment maybe, but you make it kinda hard to forget don't you?"

"Hey... is that anyway to treat something that is this much a part of your life?"

"I never asked you to be a part of my life. I don't want you in my life or in anyone's life. Why can't you just give me a break and leave me alone for a while? Ever heard of remission?"

"LOL! Remission. I love that term. You know as well as I do what it means. It is just a lessening of symptoms... a "temporary" lessening of symptoms. I am not going anywhere without taking you with me."

"Yes, I realize that now. So, what's next? Are you just going to sit in the middle of my bed? I am tired of trying to kill you. I am frankly tired of looking at you everyday. I am tired of you crowding my life with your big ass self. You are always in the way! Every time I talk to someone it is you they ask about. I accept the fact that you aren't leaving but I am sick of you taking center stage. What a needy, center of attention stealing, disease you are."

"Be careful. I can get worse. In fact, I promise that I will."

"Well, tell me something I don't know. Tell me when and how."

"No can do, amigo. No can do. You will just have to ride it out like everyone else. But remember, I feed on your weakness. Your anger and your impatience makes me stronger. You have a strong will, but you are starting to crack a little around the seams."

"FUCK YOU!"

"Oppps, see. There you go and look at those seams!"

"I don't want you here anymore. I feel like I am dead already or may as well be with you always in my face. You're always in everyone's face that looks at me. It is too hard to live on the fragments of moments when you aren't here. I feel like that kid from Titanic, holding onto a scrap of wood to keep afloat, slowly freezing and trying to fight off the inevitable. I don't want anymore lessons. I have learned enough."

"So, you are ready to give up?"
-
-
-
"No. Not yet. Sorry. Just having a bad moment. Stick around. I will figure it out."

 "Tick-tock, Billie."

"You really don't have to be such an asshole do you? Maybe one day you will become extinct."

"Not before you."

"Well, thanks for the heads up elephant. Now can I get on with my day?"









And that is how it is everyday.
And that is why I hate when people ask me how I am doing.
Or what the doctor said? 
I still have it. It isn't going away. The doctor can't get rid of it. There is no cure.







Its not your fault. I have done the same thing before with friends that had cancer. I didn't realize what it does to the person with the cancer.

I live with this elephant every day. I don't have to carry it around on my shoulders. I can ignore it or accept it or just let it go. I try to let it go. But, it is really hard to ignore. And it is really hard for people not to ask how I am doing. Even though they really already know. But the elephant loves the attention.

So... now that I have thoroughly depressed everyone.... 

The pain keeps increasing and the drugs are helping to keep that at a tolerable level. Most of the time I feel pretty good. I am strong and holding my weight. I am trying to keep a positive attitude. I am trying to live instead of living to die.

Its weird though. Like I find myself not doing things because I might not be here to finish what I start. You always have to consider the elephant.

Should I buy a new car? Why not? Get a little convertible and race around town. Oh, but will the elephant fit? No, probably not.

Lets take a vacation and go to Italy. But, what would we do with the elephant? I can't leave it here. It has to go with us. It will never fit in a gondola.

How about lets just snuggle and act like bunnies?? Okay, but we still have fat ass right in the middle of us.

May 3 is National Prayer Day. If there is one thing I believe in, it is prayer. The only thing better than prayer is a lot of people praying all together. There is a huge power in that. I will be praying together with everyone on that day. (I will pray to have a better attitude, I promise.) I will pray for you and for a healing of the entire world. I will pray that you stop smoking and eat better foods and love each other with all you've got. I will pray that you realize how much you have to be thankful for.  I will pray for your happiness and I will pray for patience and peace and hope. 

What will you pray for??  
  









 

Better than ever

Charlie just wanted to watch the Masters....

 But he took me for Easter dinner....

With our friends Rogers and Lynn...

The beach at Hobe Sound is gorgeous....

 I am happy and feeling good!

The doc is monitoring my blood work and stuff. He is still encouraging me to try a little more chemo, not thinking it will really reduce the numbers by much but could help to slow things down a bit. We will talk about it more next week.

Things have just been a little hectic, and a lot of fun!! Sorry for not updating sooner.

Don't worry.
Be happy!
I do this for you ya know. I try really hard to squeeze all I can into each day.... for you (and me). I think that in my life so far, I have already loved more than most people get around to in a few lifetimes.
What holds them back? I just don't know.
Don't hold back.
Get up in the middle of the night and eat some ice cream.
Teach your 4 year old grandson how to squirt canned whipped cream in his mouth. 
Love everyone.
Engage everyone you meet in some conversation. They were put in front of you for a reason. Don't take it for granted, figure it out!
Buy yourself some flowers.
Be a big tipper.
Go to the beach and breathe.
Or come see me and we will go to the beach and breathe. Did you know that one definition of breathe is "to live"?
Splurge on something for yourself. It doesn't have to be a lot... just something for you.
Go outside and get dirty!Allow yourself to be 6 years old, again.

During our last party,when Niles and Kara and the kids were here for spring break, we planned on everyone going to the beach and coming back to the house for a cookout. We had a big tent, tables and chairs for shade but then... out of no where... a big rain storm blew in. It poured! And like it does in Florida, it cleared up a while later and was gorgeous. Muddy, but gorgeous. No one seemed to care. the kids loved it. We all ate...sooooooooo much great food..... had dessert... with ice cream.. then sno-cones...  Then... another deluge. It poured again but this time, the power went out! We lit a bunch of candles. My angel of a hubbie got the generator out and plugged in the refrigerators...  and a fan for me! (what a guy) the kids all piled up on the sofa with me to watch Despicable Me on my laptop (with a great battery) and later... someone played monster in the yard while all the kids were running and squealing with their flash lights bobbing... having the time of their life.
I know I was.

  This is a nice group shot of most of the crowd..

Griffin getting to know his youngest male cousin from Florida, Jonah.

 

 

Pretty cute, huh....

The sky is getting really dark, really quickly as the last storm moves in.....

What a great hugger.

Despicable Me on the laptop.... love this movie! And their faces.



























A while later, after baths and clean pj's...in  bed with Mimi and Pops,  some of us watched the end of Despicable Me... others will have to live to play another day.

Sorry I have been so busy with work and playing that I have gotten behind in posting. You can see, I have been having a ball.
I promise to cut back on posting so many photos but every moment seems to be a Kodak moment.
Sending you all lots of love and happiness. 

Thankful

This illness makes you feel like you are always the center of attention. Not in a Miss America kind of way but more the unwanted center of attention.

People treat you differently and its not their fault.
Everything is different.
Your appearance changes, you have different feelings, you think differently and you do some pretty different tasks that you never did in the past like making sure you have enough Vicodin to get through the weekend cause it is depressing to hurt.

It is just kind of a depressing thing all together.

And I am so freaking sorry to pull everyone in to this quagmire of mine.

So, oh yeah, there is guilt too.











But you know what I've learned....



I have learned that when people all get together and...

oh i don't know... like...

throw you a surprise birthday party when you couldn't have least expected it or been more shocked...
I learned that at first, all the conditioned feelings jump up and you're just plain stunned.
When I walked into Nick and Kristen's home and a bunch of wanna be leprechauns all jumped out yelling "Happy Birthday!" Saturday night, I had a lump in my throat the size of Montana that I couldn't move. My heart pounded, my eyes got all watery and I was enveloped in love.


That is what I learned... that I am enveloped in love.

There are a lot of pictures on this post so cruise through and take a look 

at what I have to put up with every day. 

Isn't it wonderful??

Kristen and Amelia

Nick, James and Bogie

Ryan, Braden and James with green hair!

Ryan

Braden

Isabelle

Grace

Susie, aka Nini

I love you too!

Me and Kristen

My favorite picture of Jonah

No...wait.... this is my favorite picture of Jonah....

But then this is so adorable....

Nope. Definitely this one!

And these two faces....

All these faces!

It just keeps getting better...

Norman Rockwell couldn't come up with this stuff...

Jonah and Poppie

Poppie under cover....

My hero!

Beautiful faces I love.

                                                                                                                                                                                                          



My husband, Charlie, and I have never exchanged birthday gifts.
Or anniversary gifts.
All three dates are within a few days of each other, March 7th, 20th and 24th.

When we got married on March 20th,  it was in a little 10 x 12 foot chapel that had been built by some friends of ours on a wetlands area near Destin, FL. The actual spot is called Hogtown Bayou if you really want to get romantic.  Our kids were at the wedding with a handful of their friends... our little family that had somehow managed to find each other in the midst of almost complete chaos.
 Charlie bought a new shirt and I wore an antique dress that I'd had for years...It sounds pretty but I could only find one shoe that I was supposed to wear and ended up wearing my Ked's. Charlie had a notary friend that performed the ceremony and he was awesome. And we balanced eggs on the alter. But I have already written about that.

 I carried a bunch of wildflowers and I swear to you it was the happiest day of my life.

Back in the beginning, we were broke for sure and we worked like crazy and cooked lots of food and lived in more than modest housing... that we occasional were evicted from... but we managed to survive.  And we had fun doing it. A LOT of fun. But Christmas was a challenge with so many boys that all needed so many toys.... and underwear and socks and hair cuts and Calvin Klein perfume. And then after Christmas... it was Nick and Ryan's birthdays and then John's and when March rolled around we were just forgetaboutit. Years later and we never started buying each other stuff cause we don't really care about birthdays and we celebrate being married practically everyday.

Anyway....we barely had money for a license much less a ring.
My step-father, Big Al, sent me a simple gold band as a present and that is what I have worn for going on twenty years, until Saturday night.




This year, my precious Hubbie was really tricky.

My first present from Charlie... tissues.

And then the wedding band Charlie had picked out for himself...

And then the ring that he picked out for me.

Dang, he got me!

 

  Not only was I completely surprised by a birthday party on St. Pattie's Day... but my sweet Hubbie asked me to marry him... again... and gave me the most perfect ring in the world.

 He told me it is an eternity ring.   

I have had the hardest time writing this blog post. 

My family and friends are so precious to me. 

These guys have seen me through most of my weeks of writing this blog. They have been through the last two years of chemo and baldness, hope and fear. 

They've seen past all the pity and then hurt and sadness to see just the real me. 

And they have learned that its good to open up and tell people you love them. 

Its wonderful in fact to do just that.

If this stupid illness could inspire people to share love more easily and understand the thin line that exists between life and death then great. Bring it.

 I certainly feel loved. And so very happy.

 

Look at their precious faces. Have you ever seen more beautiful smiles? More adorable children? More love in one place at one time?

Thanks to all my crazy family, extended family and awesome friends. 

I love you all so much!