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.

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

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....

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....

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 

Both drains came out yesterday!!! Only the feeding tube left now. I am in the home stretch of healing...although it still is hard to swallow anything but liquids or semi liquids. I am sure that will come as well.

Ok I have a very dear and beautiful friend from Virginia who gave me the BEST idea.

Remember how I was lamenting about how yucky it is to not be able to wash my hair? OK if I didn't on the blog, I sure did in person...   I can't get in the shower because of the drains and tubes still in me and I can't bend over the sink or tub because it is just too excruciating. The hospital has a shower cap thingy that does a "dry wash) but since I wasn't able to rinse, after about a day or so, my hair felt sticky and grungier (is that a word?) than before.

I have another sweet friend who came and picked me up once I got home from the hospital, took me over to her home where she has an in home hair salon, and washed my hair for me. It had been over two weeks and I started to bawl it felt so good. To top it off she also cut and styled it for me and I felt very loved and very spoiled. I will be forever grateful for that act of kindness.

I can't do that all the time though so my hair is once again taking on a smelly life of its own. Well, my sweet friend from Virginia has had many health issues ever since she was a young girl (she was sledding and crashed into a tree, paralyzing her from the waist down ). She has worked hard to overcome so much and I admire her no end, but unfortunately she has had to spend a lot of time in the hospital. She is amazing though and is even sweeter and more loving than she was before the accident ~ and that was pretty hard to do let me tell you!!! She has the most amazingly beautiful long hair, and her friends came up with a way to help her keep it clean.I saw a pic of it on her facebook page and thought it was magnificent! 

She put her head over the side of the bed letting her friends support her neck. Then her friends placed a small clean plastic trash can directly under her head. They washed her hair using the trash can to catch the water and soap. I bet a towel under the can would make sure there were no big messes to clean as well.

I think it is brilliant and if you ever want to give a service to someone who has been hospital bound for so long, this is one any one can do, AND it will be appreciated so much more than you can even imagine.

Um , i think I messed up the dates on the follow up appointment. We got all the way into LA and discovered my appt wasn't until Thursday. Jo Marie was sweet though and helped me change my dressing and just checked up on me. We will head back on Thursday. Cary and I are both pretty tired, and the drive is a long one, but so worth it. I am so thankful to be in such capable hands I won't complain about the small stuff!

wayyyyy too much excitement...

I just love to hate that old curse, " May you live in interesting times" , with the idea that famine, flood and pestilence are all very interesting. My idea of the perfect wish for someone would be, " May you live a boring life". Quick , somebody wish that for me!!!!

My wound vac (a really cool piece of technology that uses a vacuum to help big wounds heal faster) got a blockage at 2 am on Saturday morning and I spent the rest of the night trying to resolve that. I finally called the home health care nurse at about 5 am, and she said she would send someone out in the AM to change everything, just to turn it off for now. I had dealt with her before and I trusted her. I did what I was told, but the on call nurse for Saturday (I had not had dealings with her before) did not want to come out to help me. She kept insisting that she would just walk us through changing the canister~ when Cary and I both knew just by the process of elimination the canister was not the problem. Both Kim and Donna, the nurses that came out to my home were lovely, but we were both sort of frustrated by Gloria. Being an on call nurse means by definition, covering any problems that arise~ am I too far off base on that one?!  grrrrr....

Anyway, long story short, we were fine just letting it be until Monday  as I had a followup appointment with Dr. Soukiasian, and we knew he would handle this no problem.

Well, then about 10:00 am, I was mid dose giving myself medicine through my feeding tube, when it got unimaginably clogged.  I was next to tears as I had tried to be so @###!!##T&**  careful about flushing it, even going so far as to flush it whenever I took a sip of water. That way I knew I was WAY over the minimum amount of before and after each dose of meds, before and after each feeding and 4 x a day on top of that. This was a bit more serious, so I called the home health care nurse again, and she advised me to go to the local urgent care. We both were not comfortable with that, so we called the on call dr . for Dr Soukiasian, Dr Parker. She told us to come into the ER and in the meantime try to put Diet Coke (of all things) into the tube on the drive up. Apparently it sometimes helps to breakup blockages. Who knew?! 

Well, as we were getting ready to leave, Cary called poor little Haley bug  (she took this weekend to go on a river rafting trip),and bless her heart, she cut the trip short and immediately headed here to watch the boys for us. And she was so sweet and cheerful about it!!! ( people - never wonder why I love these kids so dang much!!!)  Just as we hung up, our home teacher called us and asked what he could do for us (THANK YOU QUINTON for listening to that little voice!!!!!).  He and his sweet family watched the boys until Haley could make it the nearly 4 hours back from Bakersfield.

Long story short, new feeding tube put in,wound vac taken off and wet to dry dressing applied and Cary is now trained how to do that new kind of dressing. I was so proud! He didn't faint or get queezy once!!!  I have to admit, we've both kinda toughened up a bit since all this started... I could be wrong, but I really think we are tough enough now and am really praying for that boring life to start..... any ....second .....now....

again a short one, recovery is progressing nicely. I am determined to get better as quickly as I can and set daily goals to make sure that happens. Stuff like take all my meds religiously, walk every day , do my breathing exercises, and be anal about keeping wound sites clean. Then I set longer term goals. 

One goal is to take Jonah and the other boys to Legoland. He has wanted to go there since his class visited the aquarium on a field trip. 

Another longer term goal is to get healed so I can go back to work.  A few of you might know that the day my fingerprints and background check went through to start work as a special education aide, was the same day I was told I had cancer. Sweet Judy from the school district has been holding my job for me ever since.

In the hospital, my goal was more simple. Go home to my boys. I had a pic of them as well as Carly, Haley and Aaron in my line of sight in my room. That was my inspiration, especially during the hard parts.

I am a huge believer in goals. Long term, but more importantly short term, daily do-able ones to help me get to the biggies. 

others might be better at doing this with out the goals and that is ok too. I just happen to be one of those that need direction to move forward with purpose, ~ otherwise I might head into lump-ville and that is not an option. I have been given a second shot at life and I have no intention of wasting it.

Completely Minimally Invasive Esophagectomy

Ok , this post is for all those out there that might be researching. When I was trying to find info on this particular operation it was very difficult and I ended up having to piece together what I could find from different websites. The University of Pittsburgh, where  Doctor Soukiasian trained, gave me a good start, but it still had the large incision in the chest. Dr. Soukiasian trained at Cedars-Sinai in minimally invasive thorasic surgery after that,  where , as I understand, he combined the two procedures to create a surgery with only small incisions, the largest being at the neck, but still nowhere near as large as the previous surgeries had called for. The other thing that makes this surgery unique is that Dr Soukiasian does not cut the pyloric valve (as mentioned in previous blogs) . He injects it with botox, which allows a more natural healing process and GREATLY reduces the if not eliminates the "dumping" problem that has so plagued EC patients in the past.

Assisting Dr Soukiasian with the surgery was Dr. Miquel Burch, Dr Soukiasians partner. Assisting with the chest portion, was Dr. Clark Fuller,  and the anesthesiologist was Dr. Karen Sidor. A top notch team I might add. Also on Dr. Soukiasians  team was his fellow, Dr Jacquelynn Parker ( Not sure on spelling and I need to make sure I get her name right for future searches. Will come back to this one) She was amazing, sharp as a tack and just so spot on. His intern's name was Peter Sidor. He was a excellent at what he did, and I ended up feeling bad for him when he kept apologizing for "hurting" me during various owie procedures.There were others, but these are the ones I dealt with the most.

I have too say having made it through the hardest parts, this is NOT an easy operation to recover from and there were times the pain was difficult to control, BUT I am alive. I am getting better every day. The pain will fade. I will live. Unless there had ever been that doubt in your life, the power of that simple statement can easily be overlooked. I sit here, writing this with tears in my eyes, knowing I will see my boys graduate from High School and then college. I will see my grandbabies. And I am so very grateful. Yet all these words seem so pale compared to the feelings behind them. The pain will fade. I will live and I will live well.

short blog today, just one to say I am back and am soo thankful to my sister for the upkeep of this thing when I was in la la land. She and Dad were amazing as well sitting by my bedside, helping me cough, holding my hand through the owies and fluffing pillows so many times per minute I lost track.  Words do not do justice to the gratitude I feel.

I am doing fine at home. I move slowly these days, but am insistent about those walks. My boys are adoreable about it. All 4 take me on my walks. Daniel is tube holder and runner if I need help. Nathan  and Ben are a "danger lookers", and Jonah is water bottle holder. With the exception of Ben, they all take their jobs pretty seriously, and to be fair, Ben is only 5 and roly poly bugs  in the gutter are much more interesting...

more later

Still doing great... a very short update:

Stacey continues to do phenomenally.  Dr. Soukiasian came by this afternoon and pronounced her "a champ!"  He is so proud of how hard she is working and says that if all goes well, she might be home as early as next Tuesday. 

Today was a physically draining day for Stacey.  As the anesthesia wears off more and and she recovers more she is becoming more aware of her pain and the frustrations of some of her limitations.  So while this is hard for her to deal with and hard for those of us who love her to watch, it's such a good sign of recovery.  It means that she's getting well enough to be bothered by all this.  Again, great news!

She continues to walk, practice her breathing exercises, and follow the doctor's directions religiously and she looks better every time I see her.  Her energy is up a bit and she seems able to sustain it for a bit longer today.  She's also beginning to remember events better. 

Her grit along with your prayers and thoughts are a tough combination - and they're working:

Hooray and Success... Part 2

So... Part 2 of the surgery took place on Monday.  It was pretty long but Dr. Soukiasian was thrilled with the results.  There are no tumors left! That's one big Hooray.  The procedure itself was pretty much picture perfect according to Dr. S.  That's the other big Hooray.  

Now Stacey's heading into the recovery period.  This part isn't likely to be very much fun for quite some time but she's doing great.  She's being very stubborn about following the doctor's orders perfectly and is directing the nurses to do more when they are inclined to act on their humanitarian instincts and go easy on her.  Yesterday she was up walking twice!  Both times for greater distances than I (or the nurses) thought she would be able to manage.  With a will like that, she'll continue to recover at a remarkable rate.  She's already making very rapid improvements. She  showed a marked improvement yesterday morning over the night before and by the time I left last night, she was in far better shape than yesterday morning. 

I'll keep you posted...

ok, so on my last day before surgery, I ate a cheeseburger for lunch, an omelet for dinner, and a brownie for dessert. Anyone notice there were 3 no-nos in there? bread, meat and chocolate! paying the price,  but it was SO worth it.

I will be out of the loop for awhile, but I have asked my sister to "guest blog" for me. Ohhhh I feel so journalistic or something...

for now, I sign off....

 ...my parting bit of wisdom...

no updates today, too pooped, but I found something kind of interesting. I have already googled the crap out of anything having to do with my doctor, this surgery, Cedar Sinai, esophageal cancer , you name it. My bookmarks list is about 4 columns thick... But just recently, I was googling videos, I was trying to find a story about one of Dr Soukiasians older patients that beat this monster and was on his way to the Bahamas, when I found this rare gem! I was tickled to see it showed exactly the type of surgery I will be having as well as my doctor in action ( don't worry, nothing too graphic...) .

For right now, I am exhausted. Had my lungs tested today. The trip home today took a lot out of me. Big accident (luckily no serious injuries) on the 91 with a nice Hollywood style explosion and everything ~ made for a LONG drive home.

this is a pic I pulled from the LA times of the after math.