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 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.

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.

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

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

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."

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....

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

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.

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 was doing SO well.... Then I got the flu. Just a quick note to all those who have redone plumbing inside. NOT a good idea to get the flu. I am not feeling sick anymore, but I am pretty wiped out.

I went to Back to School Night for the boys, only saw 2 of the 6 teachers I needed to see and was just too pooped to do more ( for those wondering - yes I still only have 4 boys but 3 of those boys have special ed teachers or resource teachers as well as general ed teachers). I sent Daniel to see 2 more teachers to take notes, and did a phone visit with one more. I missed Jonahs general education teacher completely. (sigh)

This morning I went to see Daniel deliver his campaign speech (he is running for school treasurer) and now, if you will excuse me, I think I will go take a nap now....

hmmm, remember way back when I said about half of the patients with EC develop lactose intolerance? Well Hooray!  I am in that half. ( oh joy...) I switched to lactose free milk in moderation and it makes the world of difference to my tummy.

I am actually doing really great right now. Two days in a row I have done morning routine, gotten the kids off to school, picked them up, and did all their homework and therapy with them all by myself! 

But then comes the fun part. Nathan is LOVING the book The BFG  I am reading to him for books and stories. Jonah and Ben are just loving having the  mom bedtime routine back in place. Daniel is reading Holes and I get so tickled because he begs to read "just one more chapter Mom PLEEEEEASE....". I love to see that excitement for reading.

Wish me luck to keep up this good streak. By the end of the day I am pretty exhausted, but hey, even when I was 100% well, I was pretty tired by the time I crawled into bed each night.

Its all good. I just love finally seeing marked improvement  ~ well other than the not eating thing, but hey, that will come in time and I have the feeding tube to make sure I get nutrition, so how can I complain :).

What is that old saying, "true friends are like diamonds precious but rare"... I used to take that sort of thing for granted ~ SO busy with the hub bub of making sure this kid had that thing ready, or the oven had SOMETHING in it for dinner, or the dishes had to be put away or cards for every kid in the boys classes had to be finished, or heck even bread had to be baked (yes I baked my own bread and yes I was insane).

Friday I  had a lovely afternoon. We were able to go visit some very dear friends down south in beautiful Escondido. You know, they are only about 40 miles away yet we didn't get down there nearly often enough. It seems so much further than that and I don't really know why.  Both sets of boys (mine and hers) get along beautifully and I truly enjoy just visiting with everyone in the whole family. I have decided I need to make sure I take the time for the things that really count in this life. Friendships are one of those "counting" things.

There are lots of  things that "count". The great part is, your list might be different than mine. I challenge each of you to first imagine that you only have a short time to live ~ but then are granted a reprieve. Now grab a pen and write your "count list".

Here is just a tiny portion of mine.

*kissing owies that kids swear will make their arm fall off (or so it seems with all the dramatic screaming)  so they can go back to fighting with their brothers.
*watching the look on your kids face when you say you are so proud of them
*snuggling with your child until that bad dream gives way to peaceful sleep.
*watching Saturday morning cartoons with your kids even though you can not stand Dinosaur King, Yu Gi Oh, or the millionth episode of Sonic X and can't get that STUPID theme song out of your brain
*figuring out how to reassemble Legos for the 7 millionth time.
*letting your little one tenderly  "help" you up the stairs when it would be much easier to cling to the railing
*the wonderful things kids say that make grown ups sputter a lot, bite their lip, turn away,dip their face or cover their mouth really fast. Me~  I'm a combination mouth cover-er and face dipper.
*David and Goliath skits
*touching your sweethearts face to your forehead
*holding hands
*making sure your siblings know you love them- after all- WE were the ones who used to fight and get the owies...
*calling just to hear your parents voice
*calling just to hear your sweethearts voice ~ even though he only ran to the store a minute ago
*watching the kids wash the car - and themselves - and the driveway- and the  neighbors lawn- and the sidewalk- and the (imagine the print getting smaller and smaller , fading off into the distance)...

To me things that count ~ well, they have always centered around family, but lately have shifted a bit. No more homemade bread.

I'm OK with that.

Dates are not right on these pics, 

I had a possessed camera at the time and it put what ever date it wanted...

boys first day of school. A bit wiped out, but all in all a good day. Very very happy with the kids' teachers this year.

P.S. Ben's teacher was pretty sure he introduced himself to the class as "Incredible Hulk"...

And I am serious guys, I need help with this pic!! What IS this???!!!

OK, so I went to the ER yesterday to have the feeding tube stitched back in, had a barium swallow and tried to get some I.V. fluids, but my veins kept bursting. (ouch BTW).  I am fine now though. Just tired and a bit bruised.

Cary had the three younger kids with him as he dropped me off and they were able to have a bit of fun while I was in there. On the way to come pick me up, he got a bit of a jolt though. As he was on the corner of 3rd and San Vicente, he heard 2 gunshots fired! He ordered the kids to get down on the floor of the car and he drove like crazy to get out of there! He called 911 to report it, and the operator didn't act like it was a big deal at all!!!  It made for quite the long and repetitive conversation on the way home though. Every kid was very keen on hearing that the policeman would catch the bad guy.

Still having trouble swallowing, but I have found that if I clench my teeth, I can get down stuff a bit easier, but I am not going to push it. 

Oh my gosh, I just have to blog about the boys skit today. Nothing to do with cancer, it just totally cracked me up.

Since we couldn't go to church today, (my fault) I taught them about David and Goliath, then they took turns filling in the roles of the various characters, King Saul, a soldier, David and of course, Goliath.

The costumes were pulled from the toy room's dress up box, so Goliath resembled more of a pirate, the soldiers armor looked suspiciously like ninja pants and a Nerf dart vest, David looked great in a red bathrobe and a towel fastened around his waist with a church belt, and King Saul's robe looked a bit like Daniels Ringwraith costume from last year.

Ben REALLY wanted to be Goliath first and it was SUCH a crack up! He said his lines standing up on a small chair and saw absolutely nothing funny about it. He ended up still being shorter than "David "(aka Nathan). Don't tell him that though, He delivered his lines with great gusto.

I love being a mom.

Last couple of days have been extremely boring, (thank you for all those wishes of boring-ness) with the exception of one little earthquake... It was only a 5.4 and the epicenter was a good 30 or 40 miles away, but it was enough to spark bedtime discussion with small boys. It was also pretty funny that little Ben could not WAIT until dad got home from work to tell him all about it and how " shaky shaky" it was. We are all  fine and dandy, but it did make me think that as soon as I get feeling a bit better, I need to get my emergency preparedness kit up to speed. Right now with all the craziness, I have no idea even where our poor ravaged, picked through kits even are! (looks like I still need those boring days to continue into the long distant future...)

 Here at the new house I kept smelling something really bad up in our bedroom. Well, I finally tracked it down...  Remember what a wonderful Easter my boys had? well, as you may remember the move happened right after that and the Easter stuff got all packed up and shipped off to the new house. Except that some of the Easter baskets still had boiled eggs in them. Yum....

Haven't posted in a while, just out of pure laziness I guess.
Lets see to catch up...
*I got my feeding tube clogged again, but thank heaven Cary got it unstuck by brute force. I couldn't have done it, I am a big wuss! ...

* Got permission from the doctor to put that blasted Nexium (the culprit in the clogging capers) into applesauce and eating it instead of putting it in through the feeding tube. (all pills had been being crushed, mixed with water and shot it directly into my intestines (ewww... BTW).


*finished up all my antibiotics so all I am on now is the aforementioned evil Nexium, a med to help keep my heart rate down ( Lopressor) and my pain meds (which I am trying to go without for longer and longer periods of time. So far, haven't been too successful at that, but working on it).

* Aunt Maralee took the kids to Sea World and they LOVED IT. Thank you so much Aunt Maralee and all the cousins who made it so fun for them. Jonah couldn't quit telling me about the walrus with HUGE teeth ~ but it was ok because he was nice...And Ben was MOST impressed with the sword he got as a souvenir. He showed me all his "secret moves"...


*Oh and the final pathology report came back. All my margins (the area around where the tumor was removed) are completely clear. I am COMPLETELY cancer free ~ officially.