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.

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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....


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