Harmon "the Killer" Killebrew was one of my heroes growing up. Before I go on you HAVE to understand something about me.

1. Every doll I ever had was either bald from all the haircuts I gave or was a melted melded gob of plastic goo from being burned at the stake as I danced and hopped around in circles while yelling war whoops at the top of my lungs...
 
2. I knew how to argue baseball stats much better than I knew how to glob on nail polish (in fact I think I was 27 or so before I got the nail polish thing halfway right and I STILL think it is stupid)... 

3. I wanted to be Tarzan when I grew up...

( I think these are also the reasons why God gave me boys BTW)

But back to my point...

Killebrew played in the American League (baseball for all those football fans out there) and sported eight 40-homeruns seasons,  nine 100-RBI seasons and played in 11 all-star games back in the late 60s and early 70s. He retired with 573 home runs - more than Reggie Jackson or Micky Mantle.  He was definately a category 5 player and as a 7 year old with goofy teeth and a perpetually dirty face, I was in love with him.

My heart hurt today when I read that he has EC.

You can beat this, just like you beat the Yankees in the bottom of the 9th in '65!

 Well, I can swallow any darn thing I want now (excluding car parts or carpet remnants, but you know what I mean...) but the trick is to make sure I eat tiny meals all through the day. If I eat too much at one setting I actually get really uncomfortable. I also have learned that I really aught to drink liquids at a different time than a meal so my stomophagus doesn't get filled to quickly.  I also have trouble with high refined sugars or high fat items as it either gives me gas or makes my tummy hurt ( I am assuming because those items are harder to digest?). I just have to get used to a different lifestyle of eating. I really am OK with that, and to tell you the truth, it is a much healthier way to live anyway. I just have to figure this out and still get my calories I need in.

As far as how i am feeling these days, we have a trip to Disneyland  coming up so I must not be doing too bad! Thanks Bub, we are so happy with our Christmas present! I will post pics as soon as I get them. :)

BTW,  just for the record, I would totally win the "my scars are better than your scars" competition thingy guys love to do. Today I am posting pics to show just my bruises from the last balloon animal party.  I guess because of the Chemo I did, my veins are a mess. I am now what the nurses like to call a "hard stick". They like to roll around and go flat and when one is finally wrangled into submission, they like to imitate tires running over a spike strip. I am told it is because they have such thin walls now.  I took pics so I could show off before they fade completely. Which BTW is a wonderful thing that it is fading... both on my arm AND from memory...

When I went in for my last dilation I forgot to ask Dr. Lo to stitch Dolores back in. Dang it.  I think I will just give up on that one. She is still free as a bird.  Well sort of. I have learned how to do some major strength tape-age. First I bandage her, she does still drool quite a bit. I use paper tape to secure it as that is easier on my skin.  Then I loop thin strips of silk tape in a "support our troops" type ribbon, first one way then the opposite. Then I secure the ends of that and voila! It stays put. And without the bullet proofing! That was getting a little expensive as I need to change the dressing at least once or twice a day. Have you seen the cost of medical adhesive tape?! I should have taken out stock in 3M!

Also I am not as nervous about her popping out because now I know how to disinfect and just push that little Miss Priss right back into place (...teach her to mess with a momma!). Funny how perceptions change huh.

Anyway in talking with Jo Marie, (remember the Nurse Practitioner?) she has started talking about plans to get rid of Dolores completely (ooooh.... sounds a bit nefarious...)!  Right now my goal is too get my calories up to 1000 per day by mouth, then I can cut my tube feedings down by half.  It is actually harder than it sounds. Right now I am up from about 400 to between 750 and 850 and it is freaking HARD! Twilight zone, alien abduction, call it what you want, it is so amazingly weird for me to be counting calories so religiously to get them UP.

I am going to shoot for the end of January to be up to 2000 per day and then goodbye pain in the a$$  Dolores! Maybe I will even have a farewell party! ..... Nah, nobody would come. It's like those office parties for a co-worker no one can stand and people show up only long enough to get the cake.

Well mayyybe if she hadn't been such a Miss Prissy Pants, there would be Balloons!

First of all to everyone, I hope you had a wonderful and blessed Christmas. I don't think I could have had a better Christmas. I played Santa once the kids fell asleep, cooked ALL Christmas dinner and even got the sea of loose gift wrap all wrangled into the trash! I am SO dang proud of myself.

Right now, I  am sitting at this computer just enjoying the sounds of a wonderful Christmas winding down. Jonah and Ben are sitting cross legged completely transfixed by a Tom and Jerry Christmas Special. And . they are NOT fighting!!! See, Christmas miracles DO happen!  

Daniel and Nathan are sitting in the huge pop up tent their Aunt Emeline sent them looking for Invisimals. Invisimals are these really cool little critters that kids get to "find" using a PSP (Play Station Portable) and a special camera thingy. (That is the technical term BTW) . The PSP was made possible thanks to  dad searching everywhere for a really good refurbished one   um I mean Santa.

I really love refurnished stuff. I mean stuff from Santa. OK OK Lets drop the act, the kids aren't listening anymore. I know some people might wonder about the reliability of refurbished stuff, but heck, if you want to get technical, pretty much everything we own is "refurbished" sooner or later. It's called having kids.

Toothbrush + lotion bottle + flush before mom or dad can dive for them = toilet refurbished (We have learned that Cary can swap out a toilet in 15 minutes flat).  Dishwasher + WAYYY to much soap and a wooden spoon crammed into the spinny thing ( boy I am FULL of technical terms today) = refurbished dishwasher. See? It's starting to become a theme... Let's do one more... Not that we have a shortage, I am just getting tired of typing... Desktop + glass of milk + 4 boys playing a really exciting online game = you guessed it ~ refurbished computer. We just figure we will get a head start with the PSP. AND it has the added bonus being WAY cheaper. Good thing Cary is good with a screwdriver and fixes electronics for a living. Just don't hand him a refurbished nail gun. You might be wondering why there is a boy or two pinned by the back of their shirts to the drywall with a 12 penny nail.

I was so excited to tell you all the great news, I forgot to tell you the other good news. Dr. Lo got my stomophagus to 18 mm! That means it is 3 mm ABOVE what we were shooting for! A normal esophagus is 15 to 25 mm and I am smack dab in the middle! Now how cool is that? AND I had my first salad!!! Greens never tasted so yummy, but I think next time I want a greek salad or one with lots of tomatoes! * happy sigh*  Am I sounding too much like an alien again? Cause if I am, I am at the point where I really don't mind.

MERRY CHRISTMAS EVERYONE!

Art by Liz Lemon Swindle Copyright.

Thank you Thank you 

Thank you Lord. 

My 6 month post op PET scan came back clear.

 NO Cancer.

I was going to have a wonderful Christmas anyway, but this just makes it even better.  Not too shabby considering where we started !

Quite a few thing to write about today.

#1 still no PET scan results.

#2 'Nother procedure scheduled for this upcoming Tuesday. I really hope this will be the last one. Not that I don't love balloon animals, or even Dr. Lo and his staff...I'm just sayin'....

#3 Cary and I have made the conscious decision to be the least festive house on the block. We are opting for the "hope that bare Christmas tree that has sat in our living room  for two weeks gets at least ornaments thrown on it" look. It works for us.

#4 If I had a hypothetical friend who was nervous because that hypothetical person thinks I "found out" this person was hypothetically gay, I would have three things to say. Hypothetically.   A-hem...First, I lived in West Hollywood.  My gaydar is as tuned as they come.  I already knew.  Second, I understand the need for discretion in a conservative climate, but if this hypothetical friend thinks for one second I would even care I would be heartbroken. And finally, I would hope that this hypothetical person would finally learn that I pick those I love based on what is in their heart and how amazing they are, not who they choose to spend their life with. 'Nuff said.

#5 Cary and I just celebrated our 12th anniversary together.  We actually CHOSE to watch a sunset together ~ and it was actually romantic!!! How weird was that? We even went on a real date and everything. It.was.awesome. We found an a.mazing Greek restaurant near Ynez and Jefferson in Temecula called, imagine this, The Greek Place.  If you are close you gotta check it out.

#6 still no stitching Delores back in, Ben had the flu the day we went up to LA, so we could not in good conscious ask someone to watch him. Poor baby made the trip with us and waited in the car during the PET scan. I just couldn't ask him to wait several MORE hours while I was in the ER.

#7 Ben had his kindergarten program yesterday. He was WONDERFUL.  We were singing on the way home and he told me I was singing Jingle Bells all wrong. I was supposed to go "one horse SOAPS and SWAYS.". We have been singing it that way ever since. It is much more fun.

#8 Cary and I have finally figured out a cheap labor source to keep our house clean (ish).  We pay the kids wages to do different chores (Oh we are brilliant). Twenty-five cents to unload a dishwasher has never been more worth it. We always used to say we would never pay our kids to do chores because that is part of being a family. We also used to say we would never let the TV babysit our kids. Or allow them to have candy. Or bathe in the same water as the kid before. Or pass a holiday without putting up decorations so our kids would always remember it how festive it was. Or my favorite, never ALLOW our kids to get cavities. Need I go on at this point? We have learned that we should never say never. It is just dangerous. Like throwing down the gauntlet to God.

It fell! I promise!!!!!

I had my day all set up to go into LA to get Dolores stitched back in, but I got word late last night that my 6 month PET scan was scheduled for tomorrow. I will just wait until then to get jabbed.

Long story short, the local ER told me to go to my primary care physician to put in those stitches. Primary care doctor said he doesn't have the facilities to do it, go to urgent care. Urgent care says they can't help, I need to go to my surgeon. Insurance will not approve a trip to see the surgeon on such short notice, go to the ER. *sigh* I am going to the ER at Cedars cause they have done this before and won't turn me away. It just adds up though, because every time I set foot in any ER , I have the joy of paying the $100 co-pay. I should be thankful I have insurance, 'cause man I would be in a mess without it, but still, 200.00 in a week just before Christmas kinda sucks.

SO here we are at the 6 month mark. I am a bit apprehensive (understatement) as this is the first full scan since the surgery. I could drive myself crazy with all the "what ifs", but I just can't. I mean I really can't. Every time I sit down and have a minute to think, a kid yells bloody murder, or the washer starts banging it's way across the laundry room floor, or the dog starts barking ferociously at the squirrel parked outside the living room window, you know ~ life.

To tell you the truth, I am OK with that. In fact I love it. Just this morning I heard this little interaction from the other room:

"Eat my sword mighty beast! HYAH! Hyah! AH HA! I have you now! You cannot escape! Eat my sword Mighty Beast!"...

...silence for about 4 seconds....

"MOoooom, Cowboy (the dog) ate my swOord!"

I am so grateful I have that.

Cary and I saw the most beautiful southern California sunrise together this morning.  Ask me WHY we were treated to such a spectacular sight.

Why you ask? Oh how kind of you to inquire.

Well, about 3 AM this morning, ye ol' feeding tube decided to finally take umbrage at all the verbal abuse I had been heaping upon it - and exited my body, stage left.

Maybe if I named it and talked nice to it from now on it will be nicer to me.  Hhhmmmm... *furrows brow* ... what's a good name......*jepardy theme*....

OOO  OOO I know! I will give her a nice Latin name. Dolore Asinum.  Dolores for short.

But back to my story...

The fun part was that I had recently lost my wallet, so no insurance cards, no ID, no nothin'.  After calling the hubby to come home from work, I tore through every file I had looking for something to prove I was me and that I had insurance (note to self and any others who have medical issues - keep a photocopy of everything in a handy place in case of this kind of emergency. Lesson learned the hard way.).  About the time I had found everything I needed, Cary got home and we decided to try a new ER. Rancho Springs was closer than Inland Regional, although it is much smaller and only has basic services. The entrance to the ER looks like a cheap motel, but the staff are lovely. They got Dolores back in place and even did an x-ray with contrast to make sure she was in the right place. Bless their hearts, they still refused to stitch her back in though. *big sigh*. Is it really that scary to take a jab at a completely willing victim patient? Cauliflower anyone?

So on the way home a completely exhausted me and an even more depleted hubby were blessed to witness said gorgeous sunrise. When I was single (a million years ago - or twelve - who's counting)  I would have thought it was romantic or something. We were both too pooped for romance. Buuut it was beautiful.

I am TERRIBLE about writing now, just because I am out enjoying life. I feel great these days and think it is stupendous that feeling good has become the norm!  I am still doing the feeding tube thing, but I am able to eat soft foods now. No meats, yeast breads, fresh veggies or anything crunchy, but the world feels like there is a multitude of possibilities out there. I am just having a blast figuring it all out.

I do still feel a bit like I am in the twilight zone still though, because I am counting calories to keep them UP. How weird is that?! I will most likely need to work with a nutritionist to get all the way there, but that feeding tube thing and its days of tyranny are coming to an end (oooo I feel like such an anarchist!).

POWER TO THE PEOPLE!!!! um... I mean BIRDIES!!!

In all honesty, I still struggle with that lactose intolerance thing but with lact-aid, lactose free milk,  and lactose free nutrition drinks (and yes I  found some of those) I am learning how to deal. Just know if you ever go somewhere with me and I bolt for the bathroom, I am trying to spare all of us some major unpleasantness...

yeeeaaaaahh....best if I leave this one sans caption...

These days, I have been fully keeping up on my laundry and housework (holy crap I AM an alien!!!!), doing all the kids homework and therapies, taking the dog on daily walks and playing fetch with him at the local dog park, shaved and bathed him, made chocolate chip cookies to put in the freezer so I can warm them up when the kids get home from school and even made shaved ice for the kids when they were feeling bad about not having "snow days" in Southern California AND I have made dinner every night of the week (except once when I asked Cary to do it, just cause I knew he would and I was feeling lazy).

Life is good.

Jo Marie (remember she is the surgeons nurse practitioner) showed me her psychic side once again today and called me about 20 minutes before I had time set aside to call her! It really is almost freaky how she does that. Anyway, we talked about getting my 6 month PET scan set up. Can you believe it has been 6 months since the surgery?! I know, it blows my mind too!

Anyway, after the PET scan, I will go in to see Dr Soukiasian again and hopefully we will discuss a plan to get said evil feeding tube out. Ok so maybe it isn't EVIL per say, and it has kept me alive just fine. It isn't painful (except when I rip stitches, but then that is kinda my own fault),  it just slows me down  (...pooooor maligned feeding tube) . I am just so anxious to get the silly thing gone so I can take Jonah to Legoland for his birthday. If it isn't gone by February (oh. Dear. Lord. forbid that) I am gonna take him anyway.

I ATE PUMPKIN PIE TODAY!!!!! I also had mashed potatoes, candied yams, green beans and hummus!OK so it was a tiny bite of each before I got full, but I love Thanksgiving and I love love love Dr Lo!

*happy and contented sigh*

First off, another balloon party dilation happened yesterday.

When I was there in prep, I was trying to decide if knowing the nurses so well that I was asking :

.....about Danielle's pregnant daughter, or why Achilles wasn't at work today, or if Michelle wouldn't mind if we called Ron from the IV team this time cause my veins were being mean to me today, or if Mike was finished with his traveling nurse assignment, or where Mariella gets her hair clips 'cause they always match her scrubs.......

was this a good thing or a bad thing?   hmmmm...

Anywhoo, Dr. Lo got ye ol' stomophagus to 14 millimeters. The magic number we are shooting for is 15, so we are almost there. The tissue had grown back to a point it was before the last dilation, so he was pretty aggressive this time, actually removing scar tissue and injecting me with steroids so the tissue wouldn't grow back as fast. He really is an amazing doctor.  I also got a new medication to basically "shellac" the lining to help it heal faster and smooth it out a bit. I am so very happy that after 2 days of a clear liquid diet, I get to finally have some real food. Well, soft foods like mashed taters, canned fruit or veggies, etc. Still no salad, but we are getting there. I am thankful for that.  I am also thankful Nathan said "Mom I am really kinda sick of pizza.".

The kids have been eating that pretty solid for the past year with Cary doing the single dad thing and all. Poor hubby reached the "sick of it" stage back around last April. To his credit he stuck to it...and stuck to it pretty darn well I might add. This has been a hard year on him. On all of us really, but we emerged from the other side a with a few more gray hairs (OK a lot more gray hairs, but that is what L'Oreal is for...), but we DID emerge.

I know I have been belly aching a lot these past few blogs, but I really do have so much to be grateful for. I just need to take the time to understand that.

In fact, for the last past 5 months Cary and I have been trying our darnest to figure out a thank you gift for Dr. Soukiasian. "Thanks for saving my life, here's some golf balls." just doesn't seem to cut it.  We have searched high and low, even asking his nurse for suggestions to his interests. We are still at square one.

How can ANYTHING convey to him  that I am here because of his skill and Gods grace?  I get to see my children grow, play fetch with the dog and throw water balloons. I get to hold my babies when they cry and comfort them when they are scared. I get to watch them wrestle and giggle at their antics.

I get to fly kites with them.











How do you even begin to say thank you for that? Somehow even a nice fruit basket seems a bit trite.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Quick update

I haven't written for some time, but just wanted to give a quick update.

#1 I am doing really really well. I am back to the no pain thing, although I am having nightmares about wrecking any car I drive.

#2 Insurance is covering the car completely. SO relieved about that because we didn't have gap insurance. Hubby just picked a car that held it's value, thank heaven.

#3 Bub's sister, Cary's sweet aunt, has cancer. (* REALLY hating the C word right now...*)

Art by Pam Martin submitted to the Tabula Rosa Vanderbilt School of Medicine 5/20/2010

update: *deep sigh* Apparently our luck is contagious.

While Bub has been here to help us, his sister (Cary's aunt) ruptured her colon (she is in surgery even as I write this)  and his mother (Cary's grandmother) developed a huge blood clot in her hand from an arm she broke that hasn't healed yet. He can't go home yet because his truck is still having it's transmission rebuilt.

I am just sitting here a little dazed at by all of this. (warning: obvious understatement ahead). 2010 has been a bit of an uphill climb for our family...

Dear Janet, 

Still another of my dear friend diagnosed with cancer. You. That just sucks. You have 3 little ones. My heart is hurting for what I know lies ahead for both you and your family. Speaking from experience, I know you worry about your kids as you all go to hell and back. I really don't mean to scare you, it is just the way it is. Make sure you pack marshmallows if you get too close to those flames, then laugh in Beelzebub's face as you make s'mores.

You will beat this. Hey if  I ~ who was the biggest wimp in the county~ could do it, then you, Super-Mom, can! I will be there for you ~ holding your hand, listening as you need an ear, that kind of stuff~ you can bet on that, but I also plan to do as much as I can for your kids.  I may not be able to tend them since they are so young, and I don't have all my strength back yet, but there are a bunch of things I CAN do.  One thing I can handle is to pass the buck delegate. I can let other people know what is helpful to children who have a parent with cancer. And not just in the beginning. Everyone wants to help in the beginning.  This is a "long haul load" baby.

I am re-posting a PDF but it is also on my side bar as well.  It is a great bunch of suggestions. I am also asking everyone I know, "PLEASE ~ if you know someone with kids who is battling this terrible disease, take time to read this.

Some of the kind things done for me AND my kids were:

When Miss Haley took my boys to the park so much. She rode bikes with them and got them to laugh. Carly Sue made them giggle with the green milk and cupcakes that tricky little leprechaun left on St Patty's day. She put frosting on their noses and made special treats for their lunches. Aaron made them laugh until they nearly peed themselves when he would wrestle and tickle them. All three of those wonderful people made sure the routine of everyday life stayed the same. And for kids struggling with autism, that was HUGE.

My mother in law came down and took the kids to the pumpkin patch, bought them Halloween costumes and just generally spoiled them rotten! They LOVED it.  One sweet friend, among other things, took my kids out to pizza,  gave them an Easter egg hunt, and let them come over to her house to pick out the "good" cereal off her pantry shelves. Another friend took all my kids and gave them haircuts.  Many friends have stepped forward to pick up kids from school, and when emergencies rear their ugly heads, have even let the kids have a "sleep over". And on a school night!

My father in law dropped everything to come help with the kids and the house, not once but twice.  My sister lives far away, but sends "care packages" for the kids. One of the last ones she sent had Halloween tattoos in it and the kids had a WILD time just out of the tub one night covering almost every inch of their bodies in thin plastic imaging induced madness! I was less stressed because I knew they were having fun, and the boys knew it was really ok to laugh.

In this life, I know a parents first worry is their kids.  If they are happy and well cared for, then we sickos can concentrate on the business of getting better.  It doesn't mean it will be easy, for the parent OR the kid. But it makes it all do-able. There are some things on that list that are completely free. Some things take an afternoon.  And the "helper" gets the added bonus of being added to a bank of good memories the child is building! And the gratitude they receive from the parent is immeasurable.

For all those who allowed me that privilege, I will be forever grateful and take every occasion I can to  thank them from the bottom of my heart. I feel immensely blessed that my family and I have such a strong support system.

May you, my dear Janet, feel the same love and peace knowing your kids are well and cared for as you begin this nasty battle.

May I be part of your support system.

All my love,
Me

Questions for the Universe

First off, Cary and I would like to ask the Universe a few questions. A-hem....

#1 Did we open a cursed mummy tomb in a past life? If so when and where did we actually pee on the sarcophagus? I'm just sayin'....'cause just opening it really doesn't seem all that bad.

#2 Did we dig up some ancient Indian burial grounds to plant a Chuck-E-Cheese on the spot? Cause if we did, we will GIVE you the extra tokens...

#3 Did we by chance, steal cursed Aztec gold? And if we did, where did we hide it? ... 'Cause we could sure use some of it right now.

*Sigh* That will about do it for now. Please get back to me on that A.S.A.P. O.K? Specially 'bout that gold part... mmm K? Thanks Universe...

All-righty then, back to talking to the universes' inhabitants... Oooo when I put it like that it kinda makes us all sound like fleas....  ( there is that random and convoluted thought pattern I keep trying to warn you about...)

So, bet you fleas inhabitants were wondering what all this was about huh? Wellllll...... Here goes.

First off let me say I am grateful for the blessing of being alive and that Bubs truck didn't break down in the middle of the desert....

"Whoa", you say, "that came outta left field.".... Let me back up a bit.

Flash back fade in....

About 6 months ago, hubby got the first brand new car he has ever purchased in his life. I am talking ~ 16 miles on it when he picked it up from the dealer. He loves that thing. I named it Daisy because I needed to label my husbands "other woman". I was a bit apprehensive when he first brought her home, but there were NO jealousy issues I swear...

Befoooorrre....

I got used to the polygamous life style quite quickly and thought how lucky I was that at least my hubby didn't sport really bad hair or make me bawl all the time (TLC show called Sister Wives - look it up - or don't - it's pretty disturbing... but back to the point)

Sister Wives and the dude with really bad hair

So, Tuesday morning I just dropped off the kids to school, except Ben, who was still home sick with pneumonia. I don't exactly remember much but the nice policey-man said I made a left in front of oncoming traffic. He didn't give me a ticket  - yet -  because he was still "investigating". He said the other car looked to have been going about 55 or 60 mph when it struck me and the skid marks were "longer than they should have been". Read: he was driving faster than a bat out of - well, you know...

It was still my fault.... I .... I .... I killed Daisy!!!!

......Annnndddd after

Well, I guess I had enough where-with-all to ask some dude to call my husband and hand him my phone. Cary bundled poor little Ben in the car and rushed to where the accident happened.  I think he said he got there even before they got me out of the car. A nice lady at the scene told my hubby that I kept repeating how how hard my sweetheart had worked for this car and I RUINED it.

They bundled me off in in an ambulance and poor Cary was left wondering what to do with Ben and how he was going to coordinate everything. Luckily we have some pretty awesome friends that stepped up. My sweet friend Stephanie took Ben and the ward took care of the rest.

Cary came to the hospital after that, and it was only then he found out I was really O.K..  I think I saw him physically buckle at that point. My poor sweetheart had been told I had hurt my neck and couldn't feel my toes (not true. actual events: seat belt had rubbed the tender scar on my neck and the metal gas pedal had torn my toe a bit) .

I think it was this incident that cemented in my brain that the local doctors are terrified of me.

"She had her WHAT removed???!!"

They again refused to stitch back in the feeding tube (bummer that all but one of those beautiful stitches Dr. Lo put in ripped out...) AND they kept saying things like, "Wait, where is her stomach again? Make sure you confirm that with her history...". Stuff like that. Kinda a dead give-away...mmmm maybe I AM an alien!!!!

They did a full CAT scan from the tip of my head to my pelvis and to tell you the honest truth, I am just bruised and stiff, but I broke no bones and did no permanent damage, thank the Lord. They sent me home after just a few hours.

I did bonk my bean pretty good and got some good bit of nausea and headache from it, but Cary was vigilant about making sure he woke me about every 20 minutes or so. All night long.

Cary's dad Bub insisted on coming up from Vernal to help ~ which to tell you the truth, I am more than a little grateful for. I didn't think I would be quite this laid up! I am pretty sore, but after what I've been through, I  think I would be a bit tougher than this! ( it's the big boob syndrome coming through again....)

Oh, and after Cary brought me home, he was in a rush to get pain meds for me, and got a ticket (rolling stop at a stop sign, not speeding I should add... ) on the way home from the drug store.

We gotta have another sit down with that Universe ....

AND about 5 miles from our house, Bub's truck blew it's transmission.

O.K,   THAT . is . IT!  ~~~ Universe needs a time out....


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ben is sick. It wears me out faster than my old self to have a sick little one to stay up with. pretty pooped right now, but wanted to pass on a link I thought was a worthy cause.

http://www.starkravingmadmommy.com/2010/11/what-to-do-with-leftover-candy.html

gonna go sleep now cause my little guy is finally down. for now.

I felt awesome today. A bit tired by the end of the day, but another day with NO owies.  How cool is that?! If this keeps up, I will be back to my old self in no time. Except hopefully skinnier.

Only I really would NOT recommend the diet plan. Or the "involuntary lap band" as my hubby calls my esophagectomy.

Favorite quote from Halloween, but first some back story...

Jonah will not eat anything he is not familiar with without a big ordeal of doing the whole "thank you bite" thing, and even then it is a big deal. Most moms are Totally. Familiar. with the thank you bite, but for those of you who aren't, it is basically a statement that says if mom went to the trouble of making you food the least you can do is take a bite to say thank you.  And if that doesn't work, we go to the no dessert thing. Except I haven't made dessert in a dogs age, so that really doesn't work unless we've got something to back it up.

These are great ways to get kids rooted in hating ANY type of  change to try something they might like. Obedience by guilt and bribery.  Works for me.

Anywhoo, Last night the kids went to the church's trunk or treat (like trick or treating, but people give out candy from the trunks of their decorated cars). I wasn't gonna INSIST my kid get more cavities, so I did not object when Jonah gave his dad all the candy he had not seen or tasted before.

Cary grinningly commented: "Sometimes I like autism."

Just an administrative apology to those who get email updates when I post. Um, I am kinda new to this blogging thing. I am definitely one of those that go kicking and screaming into new technology, but once I'm there I love it. To make a long story short, I have been editing and updating everything from adding or removing punctuation to ~~~~ wait for it~~~~ I JUST FIGURES OUT HOW TO USE LABELS!!! 

Buuuuutttttt, what that means is every time I hit update, you would get another thing in your mailbox to annoy the crap out of you.  so. sorry.

I now have learned how to do a lot of this from , imagine this, the blog management page.  ummmm again, I. am. sorry. bout that.

LOOK OVER THERE!!!    ==========>

The great news is that I am bouncing back pretty good right now. I am feeling the best I have in a long time!!!!! (today)  I have el-zippo zero pain, so that is excellent and the new stitches Dr. Lo put in are holding great. Not to mention he put more of them this time and so far only one has torn through. Not too bad odds I might add.

AND I cleaned my house !!!! OK, just the downstairs, and I didn't mop, but Hey! I cleaned my house!!!! (this statement deserves the extra exclamation points and rotten sentence structure)  Cary even got in the swing of things and shampooed the carpet.

AND I -yes I - cleaned out my fridge!  I asked hubby when the last time he cleaned it out was and he said ~~~~ well ~~~~~~~ maybe it's best just to leave what he said to your imagination. I will only reveal that I think I saw something run for cover behind what I assumed was old feta cheese.

The only bummer part is that I am on a completely liquid diet until my next procedure which is scheduled for 2 days before Thanksgiving. Kinda sucky, but if it increases the chances of this third balloon animal adventure being successful, I'll be thrilllllled.  I am actually looking forward to eating a big salad. Weird huh. Especially since the hubby made the kids brownies tonight for movie night and I am smelling them. The REALLLYYYY weird part? I am happy just to smell them. I have absolutely no desire to eat 'em!

Most of you are now understandably concerned at this point and are starting to pull out your Alien Impostor Detection Kit, but I assure you, I am still me.  At least that is what I keep telling myself....

I really believe that the Good Lord is kind and has kept up the blessing of allowing me to think food is yucky right now. Except salad. I am really hungry for a good salad...

I Am The Humanoid Known As Stacey. Obey Me.

*sigh... it looks like MORE balloon animals are in my future. The dilation that was just  done was only marginally successful. The doctor was only able to get it about a half of a millimeter bigger. He took out more staples and stretched it as much as he dared, but he said it was starting to tear too much (read bleeding) so he stopped. He is the best at what he does, so I trust him, but oh man I am just a bit disappointed. I have the next one scheduled for the Tues before Thanksgiving, which means I will be on a clear liquids diet for said holiday. Apple juice anyone? :)

Right now I feel a bit gassy.... Now I know what a baby feels like when new parents insist it is not a smile ~ just gas ~ which if you think about it would explain A LOT of my pictures...

I am writing two posts today. This one is a bit different.

Look at this beautiful thing. 

It was entered into a contest sponsored by Nikon and won
11th place.

I hate it. I mean REALLY hate it. But I can't look away at the same time. It is a picture of 2 cancer cells getting ready to turn into 4.

What I WISH it was...  I wish it was a pic of some really cool (harmless) crystalline life form that only Spock could talk to. I wish there was no such thing except in some Trekkies wish list from an online auction he/she could never afford.

I am especially frustrated about this today because of a blog.  A blog I don't normally read, but the author of stark. raving. mad. mommy which is a blog I DO read and is in fact posted as one of my favorites, guest blogged.

This blogger (not SRMM ~  the Pajamas and Coffee one) swears a whole lot more than I do, so I keep it as a guilty little secret I visit when I think no one is looking. I read SRMM, on the other hand, all the time. She is my morning fix.  She doesn't know me from Adam. But I pretend to know her because I get her. And she is funnier than h-e- double toothpick. But today I wanted to punch a wall over something she wrote. Today she wrote about finding a lump in her breast. Yeah, it may be a cyst, but I remember that waiting. The wondering. That worry. I SO do not envy her in this stage.

I have listened, prayed, and cried as SO many wonderful people have been affected by this horrible disease. So many I love. Every time it brings back that horrid day when I first found out.

The doctor had told me I needed to come in as soon as possible about the results of all the testing I had been doing. It was SUCH a busy and hectic day, so I asked if my hubby should come in with me. They actually told me that it was my choice. This is the thought that ran through my brain.

"Well it must not be too bad, just heartburn crap and how to treat it, SO relieved it isn't anything serious...  soooo... I'll just add it to my list of stuff to get done today and let the hubby get his honey-do list done. Glad all that worrying crap is over."

BAD mistake. She sat me down in that freaking FREEZING examination room and basically told me I not only have cancer, but I have a kind I should never have. A kind that affects smokers, drinkers, and men over 65.  A particularly aggressive and nasty kind where the mortality rate hovers around 80 to 85 percent within the first year. I later found out those were the really overly optimistic numbers.

I think I kept it together until I got out to the parking lot. I sobbed, I mean really sobbed, for over an hour. Then I had to drive home. Alone. My husband stayed on the phone with me -and yes honey I did hear you swearing under your breath at the doctor for not INSISTING someone ANYONE come in with me - and I yes I heard you swearing at yourself for not going no matter what you stubborn wifey-poo said. And yes, I did swear at myself for not listening to you.  And yes I am grateful you were by my side at every major appointment after that and even most of the not so major ones.

On that long drive home ( it was really only about 10 miles, but it seemed more like 10 thousand), I dryly observed that my sobs sounded a lot like my deep belly laughs - only upside down. I think that was when I determined I was NOT going to let this monster beat me.

And I haven't. So far, with Gods help, I have defied all the odds, in fact I think I made my own odds up as I went. It made me happier. It's a good thing I didn't see the documentary Crazy Sexy Cancer BEFORE  did all my treatments, or the hubby might have seen some weird stuff going on.

As it ended up , yes I have pain in the butt crap  -like that rouge feeding tube- but nothing that is life threatening anymore. Once in awhile I do get scared about remission, but I can't let that rule my life. I go forward now,  grateful for every second, even the hard ones. Belly-aching, pain, annoyances - they all mean I am alive. And I will never take that for granted again.

Belly- aching...

I rrrripped my stitches AGAIN. And as I explained to my friends on Facebook, when I say ripped my stitches, I mean ripped the flesh that holds said stitches so the perfectly intact little loops can just flop freely around my belly.

I called to see a local doctor to get these dang (don't think I used THAT word when I first described it) stitches put in yet another section of undamaged skin. ( I did NOT want to go to the ER again) Since I am running out of said undamaged skin, he suggested I wait until I go in on Monday for my new dilation where they can take nice deep jabs at me stitches while I am unconscious. Frankly I think he was being a woose. If I can put up with the damn thing tearing (and yes I said damn) then he can pull out a needle.  SO right now I have taped up my belly so much I think I have invented myself a bulletproof belly vest (hmmm *wondering to self if I could market that to law enforcement for some much needed cash...).

In a nutshell, what that means is I really can't bend, twist, lift, lay on my left side, or basically do anything I have been so proud of doing these last few weeks.   Well, I COULD, but I would run the risk of  popping my major means of nutrition out and that would be serious.  Apparently if the dag-nabbed thing comes out ya need to get it back in immediately cause it has formed a "channel" and that channel will close in on itself unless it is reinserted immediately, which DOES take an emergency room. If said channel does end up closing it would take a whole new level of owies to get it back in, and frankly I really want to skip that part.

So for right now I am a vegetable. A very bored, and very frustrated veggie. Like cauliflower. Only with more cellulite.

My poor hubby is "jones-ing" SO bad. Anyone who doesn't believe caffeine is addicting, come on by and I will show you some withdrawals baby. Let us just ignore the fact that we (Cary and I) sat down and added up the milligrams of said evil stuff he consumed everyday and it was equal to 13 cups of coffee.

mmm.....How did his arteries keep from exploding again? He has been on survival mode way too long. He is a trooper and would have been willing to go another year if he had to, but luckily he doesn't.  I gotta get back to taking care of my guy, 'cause obviously he doesn't do so good without me.  It's nice to be needed.

(me smiling in a sort of sick perverted satisfied way...I think I really am twisted...)

OK, with me back in the saddle we just have to prioritize stuff.

Here goes...

#1   get Cary off enough energy drinks to fuel a
       nuclear reactor so he doesn't DIE.
#2   clean house
        pick up house
        make it so the bugs won't invade
#3   go through boxes to try to find Halloween decorations
       purchase new decorations for Halloween
       call it good for decorations until Christmas.
#4   make a good healthy dinner for everyone.
       Feed the fam so they will not get scurvy/protein deficiency
       Make sure we have plenty of cereal and milk and bowls.
       (wondering if I can get paper bowls next shopping trip)
#5   get all laundry done and put away
       get all dirty clothes washed
       Pray: "Dear Lord above, just let me have enough
       clean clothes for the next school day".
#6  oh never mind...

I think that's good.

I am proud to announce my house has never been cleaner oh wait never mind. I am ashamed to admit my house has never been ... oh well, you get the idea. BUT on the upside, I DID get the kids to and from school, did laundry ( don't worry there is still plenty left) , did dishes (but you know how dishes are, they multiply when you turn your back even for a second)  made cookies with Ben and EVEN put one of those orange plastic tablecloth Halloween-y things from the dollar store on the table ~ which I promptly melted onto said table when I put said cookies straight from the oven onto it. That melted tablecloth and a big spider sticker are this year's Halloween decorations.... but that is another story....

I got all kids homework and therapies done, listened to various reading levels as kids read to me, practiced multiplication tables and explained how even though the numerals get longer, the number gets smaller when there is a decimal in front of it.

BTW the look of utter confusion was priceless...I finally explained it like this: once you get under the zero, you enter bazarro land... and he got it. Ya gotta know how to talk to kids.... 

AND I even made dinner (OK so it was frozen TV dinners heated in the microwave, but hey, the munchkins got fed...). Got all kids bathed, teeth brushed, and read to.

And dear hubby o' mine has chosen today to go cold turkey off caffeine. He says I am his "sponsor". mmmm.... I don't remember signing up for that, but OK, if it will help him stay healthy. He has been drinking WAYYYY too many Red Bulls lately, so I really do support him in this. Especially, because he has been drinking all these said "energy drinks" so he could stay up to do the single dad thing, take care of his sick wife, try to keep up with the housework, and all while earning a living and keeping a roof over our heads. I think we are BOTH glad that part is ~ for the most part ~ over.

Besides, I also feel kinda guilty for getting after him all these months to go take a shower cause he smelled bad ... and it was me!!!!  Apparently the feeding tube going directly into my small intestine gives off a slightly "poopy" aroma. ~ who knew~...

I can do the sponsor thing.

SOooooo, that is why I might not write every day now. by the time I get all this stuff done, I am pretty pooped...no pun intended.... but it does remind me, I need to go take a shower....

so...... the dilation went O.K., but I gotta do it again.

Good news: no sign of cancer HOORAY!

Also, he stitched my feeding tube back in (the stitch from the Monday ER trip kept slipping, making me feel a bit like a trombone). He pulled it out a bit more out than I am used to , so I have about 5 inches of feeding tube hanging that I need to tape up now. Not sure why he did that, but oh well, at least it ain't moving! 

Bad news, but really not so bad: scar tissue built up so much that the surgical staples were actually touching, creating a web across the 1/2 centimeter opening. Dr. Simeon Lo removed a few of  the staples and dilated my stomophagus to about 1 centimeter. He wants to get it to 1.5 centimeters, hence having to do it again.

right now I am sore and a bit tired, but hunky dory. Hey, I've been through A LOT worse. I can deal with more balloon animals...


p.s.  as per the Explanation of Benefits, my insurance company loves to send out, they have well exceeded a million dollars (yes that is the one with the six  0's after the 1)  in pay outs for my medical care. I suddenly understand why they were so keen on trying to get me to settle on "adequate" care...

SO...... tomorrow is the big day. I go in for the long anticipated dilation! woo. hooo. I am excited and just a little nervous. I know of all the stuff I have been through, this is easy peasy stuff. I don't know why I should be nervous at all. Just a simple endoscope where they will play with balloon animals in my stomophagus.  Well ~ either that or just inflate a balloon to stretch it to make it so I can swallow.

I wonder if they will let me choose...

Miss Haley bug will be coming to watch the boys for us, so I know they are in good hands. She is such a sweetheart and the boys just think the world of her. Oh wait. So do I.

moving sucks. but on the bright side, my sister just had a baby boy and I am thrilled for her :).

I am flying kites today with my boys! Thank you Miss Sheri. I love you tons!!!!

I may hate ERs and all that comes with them, but once in awhile they can be kinda amusing in a sick, twisted sort of way.

I went in yesterday to have my feeding tube stitched back in - Note to self and anyone else - NEVER go to the ER on a rainy Monday morning. First it took us 3 hours to get there (apparently people in LA panic when they see rain). Then we waited 5 hours in the waiting room to be seen. I wasn't concerned about that, I was far from critical and understood I was on the bottom of the totem pole.

But on to the fun part. I had read every magazine in the place (all 4 of them), read the paper, and was just basically bored out of my skull when a guy about three seats down said ~ out of the blue, "My son was shot down in Vietnam". I immediately went into "oh poor guy mode" and glanced up at him. He looked about 30 or 35. Hmmm. I was trying to ponder on this and do the math in my head, just cause I was bored,  when he said,  "Yeah he won the Medal of Honor". In a very crowded ER, NO one spoke.

I will now give a few choice quotes from this obviously VERY intoxicated young man, and in the order they were given. Keep in mind a couple of things:

1. he was never confrontational, just a nice guy who smelled bad and had had a few too many.
and
2.  ~ no one was speaking to him. 

" I wanna talk to Jesus. Wasn't he Jewish?"

" I got a lot of daughters, they are all Republican thank God."

"I NEVER SAID I was God!  I already met him, he sent me back to save all your souls".

"I'm still going steady with John Bonham"

" hmmm, Bill Gates... never mind I'm not allowed to talk outside of school".

"Whatever happened to Led Zepplin? He's my uncle".

" Here's my vote... Here's my vision...King Arthur... BOOORING."

"I'm jewish you know"

"Everybody's accusing me of being white. I'm not you know, I'm olive."

" I'm only here on business ya know"

To everyone who came in he said loudly, " I saved a seat for ya!"

"They treat me like gold here " (this was right after he got in trouble for picking the flowers in the planters)

When the volunteer, nurse or registration people would call out any name, He would stand up and yell, "THAT'S ME!". The security guard escorted him to the triage area after that, where his vitals were taken and he was escorted, very kindly, out.

He then ran back in , threw the flowers he had picked down on the floor and ran back out.

He snuck back in later and actually told the triage nurse he was having heart pains so he got his little bracelet and was told to wait. He still said some pretty wild and funny things, but by that time, he had found someone real to talk to ~ so Cary and I , we played hangman.

Thank you drunk guy for making a five hour wait much more enjoyable and yes I know I am a sick sick twisted person for enjoying that so much...

 Boring.....

  Not so boring....

Ok,
1. Still working on the kids school thing, but it is looking like we gotta move.

2. Almost finished straightening out the checking account mess.

3. Tore my last stitch holding my feeding tube in. Gotta run to the ER as soon as we drop of kids.

4. Today is picture day at school.

This has been, Update In a Flash...brought to you by crazy moms everywhere....

I was talking to Ben, about when he was born and how I named him and he said SO seriously.
"thanks mom".
Me: "for what?"
Ben: "for naming me Ben an not som'fin stupid".


Ok I am all better now.

This is entitled Hell

Detail of mosaic in the vault of the baptistery of

Florence Cathedral.  - no really. I promise. That is REALLY in the baptistery. I could. not. make that part up.

Ok so my week hasn't been QUITE that bad... but close.  Some wonderful person has stolen our checking account number and apparently Western Union doesn't care if the account is stolen, as  long as they get a routing number... good to know if I ever want to turn to a life of crime.

Sigh ... and to make matters even better, the bank keeps messing up and allowing charges to be posted to the account even though we placed a restriction on it last week. Then they won't let us close the account because there are still items pending. 

Wait  I'm not done...

The bank is also holding on to Cary's paycheck until the negative balance (caused by all the stolen funds) is resolved....Can it GET any better? Oh yes it sure can! 

Remember last spring when we had to move because our dear landlord lost his primary residence and needed the rental we were living in? Well Cary did the absolute best he could to find a new house on such short notice, and with me in LA doing the Chemo and radiation thing, but it fell 1/2 mile outside the district. He applied for transfers and that was that.

Well, we just got a registered letter saying that this year, my 3 special needs kids were denied and the week they chose to dis-enroll my kids was - yup you guessed it - this one!  Looks like we have another immediate move ahead of us, or I get to home school the 3 younger kids until we can move back. Daniel was approved because he is not in a special needs program. I won't send them to the other school district because #1 it is too far , #2 my  kids would loose many of their current services, and #3 the change would be terrible for them mid stream like this. They have JUST settled down from the roller coaster ride that was last year.

Well, I am done belly aching now, I am just praying no kid breaks an arm or my feeding tube doesn't pop its last stitch ~ cause baby we aint got no money take our broke a$$ home!

I need to take time to go fly a kite or two....if we had the money to buy a kite...

I found some stuff I wrote LONG before I had cancer.
I wrote this one soon after Sept 11th 2001.

In moments of crisis,

we don’t call up

our nice furniture

to make sure it's OK

Or rush to hug our cars

a little tighter,

Or wish to spend

just one more

last
precious moment

with our pretty clothes.

May history remember me

not by the clothes I wore

the houses I lived in

or the money I had

but by

the hugs I gave,

the hurts I mended

and the kites I flew.
By Stacey Clark 

long time no blog...
I really have just been living my life, enjoying my boys and getting out and about as much as I can! My birthday itself kinda sucked because I had to go see my primary care doctor. He checked out my feeding tube and ordered an ultrasound to just take a peek inside to see what might be going on. No needles though, so it wasn't too bad. Just a lot of travel time.

The Friday after my birthday was the fun part. I posted the whole video on face book, but here are a few image grabs from it...

looking SO innocent and sweet....

can you tell what they are doing?...

that's right~ they are covering their momma in silly string!!!

It was really fun...

I got my wedding ring fixed for my main present,
and I couldn't be happier...

...and the boys sprayed on...

I really did have a great birthday.

42 years old and proud of it! I earned EARNED every wrinkle!!!

OK, I think we have this not getting enough calories thing licked. Since the flu, I have been having a really hard time going back up to the full amount I was supposed to be receiving via feeding tube. Bloating, distention, all that nice stuff.The answer was simple! 2 cans at night and 2 cans during the day! TADA!!! fixed. Jo Marie is brilliant. I should have all my energy levels back to full capacity in no time.

I am having a bit more of a problem because I think my feeding tube site is infected. I have a doctor appointment to check it out next Wednesday. I get blood tests done tomorrow. oh joy.... more needles... hope I'm better hydrated this time...*sigh...