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!

Catching up

There is this mockingbird that lives near my house. It is usually perched on the wire just outside our bedroom window. I love mockingbirds and have heard/read somewhere that they are the state bird of about 10 states so I am not alone in this. But I discovered a neat trick. Usually I will open the door or window and whistle a little while and it will eventually answer although it probably wonders what in the hell kinda bird I am. This morning I blew its mind. I found a recording online of a mocking bird so I opened all doors and windows, cranked up the volume and let it rip. My computer and my mockingbird were just singing there hearts out and it was a beautiful thing!  Then, out of no where, my cat, Miss Gray who normally hardly leaves our bedroom... lazy cat....comes bounding into the room all alert, tail straight up... "Where's the bird??  I know there is a bird in here!!".

Then I made a whole bunch of buttermilk biscuits, a batch of yeast dough for herb rolls and cinnamon rolls, shaved the dog, and took a two hour nap!  What a fine morning!














Okay so here is the other part of the story. I have hesitated to write about it and my precious Hubbie has recommended that I not... but I have written about everything else and it is all good. And I want to tell you what I am thinking.

The last three chemos I have taken haven't really done anything. Well, that is not quite true. They have done a lot of really bad things because that is just the nature of chemo. And I am not talking about "rounds" of chemo but the last three different types of chemo. This goes back to last October. I forget the names of the medicine and it doesn't really matter but the chemo they gave me then is what put me in the hospital. While taking chemo, a tumor grew in my abdomen. How can that happen?? Beats the shit out of me. So... after getting out of the hospital and recouping a while, they put me on another type of chemo for a few months. This one caused adverse kidney reactions. SO the next chemo they tried... was the one I just finished. I had it every day for a week. I handled it well and didn't feel too badly and my numbers... the test they do on my blood to see if the "c" is increasing or decreasing, went up. A lot. Like, they doubled. Plus, like most chemo, it depleted a lot of other stuff in my body like white blood cells, blood platelets, etc. Now, I love my oncologist and his nurse but when they got the test results they were shocked. They thought there was a mistake because there is no way my numbers could be so high and I could still go to work everyday and function as well as I was... so they re-tested. Still high.

Now, I am thinking, this stuff is not doing me any good and rather than just jump in there and start another type of chemo and yes, there are a few left to try... I am just going to take a break for a while and let my body get better. I talked with my doctor and he understands. I am not giving up. I just want to give my body a fighting chance and I need to let it get better to try again. You know an oncologist can't even recommend vitamins for you to take.  Isn't that crazy? I take a bunch of supplements... vitamins, immune support stuff and I know it helps. That is why they can't understand how my numbers can be so high and yet I am still feeling pretty great. Hello!

That is the story. I feel pretty wonderful. I get a little tired, I rest. Is it risky for me to decide to stop taking any chemo for a while, yea probably, but that is what I am doing.

My oldest grand kids are coming for a week at the end of March and I am going to feel great when they are here. Not pukey and balding. Okay well maybe my hair is falling out a little but I won't be bald in 3 weeks, I hope.

I am going to work with my regular G.P., Dr. Milstein, who I adore... and with another friend of ours who is a R.N. We will do a bunch of evaluation of my blood and put me on a bunch of healthy supplements to build up what has been depleted. I will get better and then I will think about whether I want to do more chemo or not. But I am going to tell you right now, I am thinking, not.
If I have a few years left, I am not going to spend them feeling like crap and going from hospital to hospital and doctor to doctor and chemo to chemo. I am going to enjoy every second of every day and feel as great as I can. I will ultimately end up in the same place anyhow.

Are you with me on this?

Now, here is what I DON'T want. I don't want to be treated like the sick and dying girl... or old lady.(I keep forgetting my age!) I am not dead yet. I might be tomorrow. I might be in ten years. Who knows? No one and that is the point. So do not treat me like that, please. I am happy most of the time and feel pretty great. 

I wish you could get a whiff of my house right now... I just took the herb rolls out of the oven and the aroma is unbelievable. Cinnamon are going in next. Wishing you were here. 

Love you and love your support. It is what keeps me going. I promise.

No more words for now. Just warm thoughts I am sending to you with hugs and huge love.

TGIF!!!!!!!!!!!!!!!!!!!

My final day of having chemo all week and yes it pretty much sucks but it is all okay. I haven't felt too badly and life goes on in a fairly normal way.

I get a transfusion today (5 hours) and then my final chemo for the week today (3 hours) and then I see my Doc for a follow up on Monday. I am not sure what he will want to do but whatever it is, I will do it. I like him.

Just wanted to give you a little heads up. I know you all like to call and email and I can't always get back to everyone and I feel bad.... I have been working all week too.... so please understand if I try to cover it all in this little blog.

I do still appreciate your every thought, prayer, concern positive affirmation, etc., much more than you know.

Your love and comments keep me going every single day. Don't forget it. You are my life line and my daily strength. Thank you so much.

Love and big hugs to all!!
 

It is all okay.

The last test results weren't too pretty but its okay. I am feeling fine and doing the chemo thing everyday. I am still working.. at least trying to around appointments and more blood work and all the phone calls and text messages and emails....  but its all good.

I danced a lot today. Well... this morning I was listening to some fun dance music and shakin it.        It was "Do you love me?" by The Contours..... just paste the link below into your browser.....

http://www.youtube.com/watch?v=TXs_Cyrb3NQ&feature=related


Or maybe you prefer the dirty dancing versions....


http://www.youtube.com/watch?v=x43vK0k6A2I



See, you didn't expect that did you?

Then on my way home I stopped at a little market and picked up some pretty sea bass and cooked up a nice little dinner. That was fun and now I am stuffed but happy and propped in my comfy bed with a bunch of fluffy pillows. A little tired but hell I have been running around all day!

Everything is great. Life is good! I love every minute of it!






Here are a few recent picture of my new twin grand daughters... Amelia, on the left and Scarlet.

Adorable aren't they??

 Amelia is olive complected and has a head full of dark hair... to me she looks just like her mother, Sonya.

 Scarlett looks totally different. I think a lot like her daddy,  Ryan... but I watched a video of my hubbie when he was just a little baby the other night.... and she looks just like him! I swear!

 Precious! With a full tummy and in her Pops lap.

 Amelia looks like she has something to tell the World! I can't wait to find out what it is.



Just wanted to say howdy and let you know all is well.

Thank you for the continued support in each and every way. It is so appreciated. And it works. : p

With all my love to you.....

Damn... I hate to tell you this....

I guess the best thing to do is just put it right out there.
I haven't been feeling well at all. I keep working because it takes my mind off not feeling well.
We did another PET scan on Tuesday. This test is about the best thing technologically, we have to see what cancer is doing in the body. You don't eat any carbs or sugars for 48 hours and just before the scan, they inject you with radiated glucose. The sugar in the glucose is attracted to cancer cells and with the radiation, it lights up on the scan anywhere there is a measurable amount of cancer.
I met with my Doc on Wednesday. It has spread to the liver, more lymph nodes in the abdomen and something about the kidneys but I stopped hearing much that was being said to me about there.
I got the news today that my CA-125, the blood work they do to determine the rise or fall of the ovarian cancer cells present, is on the rise and back up to where it started two years ago in the 4000 range. Remember that normal is zero to 15. Not too good.
So, what does that tell us? Well, the chemo I have been taking isn't working. So we start a new chemo on Monday and we are going to do it every day... Monday through Friday. Then we will take another look at the blood levels and make sure it is working.
No, its not a picnic, but at least I still have options.
I still love my doctor and you know what? He really cares about me. I love his nurse and same thing, she really cares about me.
I am trusting that they will do whatever they can to help me and if they can't, well... maybe I will take my precious Hubbie to Paris and kiss him under the Eiffle tower.
The prognosis is as yet unknown....and I have a crystal ball. (Damned thing doesn't work.) 

I am so sorry. I really wish it could be all rainbows and unicorns... but life is tough sometimes and we just have to roll with it.

Amp up those prayers.. I know you will... and I will do my part. I will show up for chemo and keep a positive attitude and see what happens. I didn't write the script, I am just here playing this role. The ending is a mystery to us both.

Please know that I am not afraid. I am surrounded by love and support. Whatever happens, is okay. No whining, no sniveling, no negativity.
Do you hear me??

I am still one of the richest people in the world.

I found true love.

I lost one child and gained two more.

I have my Mom, who lives with me.

I have 4 wonderful children.

I am rich with my extended family, my sister, brother, daughters in law, and all their extended families, cousins, aunts, uncles, step-brothers, step-cousins, step aunts... it just goes on and on...

I have 7 grandchildren!

I have friends... not hundreds, but true, real friends that I love dearly and only wish I could express to each one of them how much they are loved. 

I am by far, the richest person I know.



Check this out this link below if you can. I have seen many of the TED talks but this was so beautiful .I love macro photography and this captures a bunch in a video. Hope you enjoy it and thanks Nena for sharing. 
Just copy and paste the line below in your browser.
I love you.
http://www.youtube.com/v/xHkq1edcbk4?version=3

Living life and loving every minute

Time has been flying by and so much is going on... I have gotten way behind in my blog and I don't even know where to start.
My computer melted down.. so there is an excuse for the delay...so I bought super cool laptop. (yippee!) I had actually written a few posts and lost them all. And its hard for me to re-create a post. Plus it really ticks me off to lose them like that.

I have started back to work from home, part time, and that has been great... but I needed more income so I started another part time job close to home and let me tell you... two, 20 hour a week jobs means that you work about 60 hours. I know the math doesn't add up but that is what you do.
 
So, I have the two jobs but my original boss now wants me to come back full time. They had hired a couple of people but one left and there's lots to do and they need me full time... only now the people at my new part time job have gotten attached to me and they don't want to let me go and they are fighting to keep me. Its crazy. Flattering but crazy! Okay, I made a birthday cake and that clinched the deal. I do make a pretty good chocolate cake. So here is one of my co workers and my newest boss. They are really sweet.

 

Allow, allow, allow. Breathe and let it work out. It always does. : ) You can freak out if you want to but in the end, it will all work out just as it is supposed to.




Another blessing in my life, my son Ryan and his beautiful wife, Sonya, had twin baby girls on Sunday. (Do I have to call him my step-son when I love him like my own??) They are so beautiful and perfect and tiny and different and perfect in every way. (Yes, they are perfect... twice.)
Isn't the birth of a child about as close as we get to witnessing a real miracle on earth? I think so.



Meet Scarlett....

 and Amelia.....

 Their daddy, Ryan....

And my wife in law, Jo.
 

Life goes on and on. It is so amazingly beautiful. I got to see the girls tonight for the first time with my husband's ex wife and our son. That may sound odd to you but its not to us. She calls me her wife-in-law. I love my husbands ex wife. She is an awesome woman and has always been a great friend to me. Her son is my son and since he is a twin too, I appreciate the fact that she brought them into the world. Boy do I appreciate that!






 I am feeling pretty well. Chemo last Thursday. Had a little rough weekend and back to work on Monday. Twin baby girls to see Tuesday. How can I be anything but happy??

We will do a PET scan in a couple of weeks and see what my innards look like. The chemo I am on now is tolerable. The doc wanted to amp it up and use a stronger chemo because I can tolerate it but I whined. I have hair. I feel pretty good most of the time. I like feeling a little more normal. He relented. So in a few weeks we will see what the  scan says and go from there. Cross your fingers and toes.

Count your blessings my angels. They are there. Be careful with your words. Choose them wisely. My Hubbie said that he prayed for patience and now God puts every slow, 80 year old driver in Florida right in front of him.  LOL!
He is right. That is how it works. You don't learn patience any other way. Or anything else for that matter. I appreciate my lessons. I am leaning. I don't want to have to go to summer school.

I don't look happy but I am!! A little pooped... and I didn't know my hubbie was taking a picture.... so sorry... but look, I have hair! Yipppeee!!!


LOVE YOU SO MUCH!!! THANK YOU FOR BEING THERE!!!!!