What is it they say, about the best laid plans... I had everything coordinated out perfectly, which kids was going to be picked up by what person and so forth - when 2 of the 3 came down with the flu. We could not in good conscious, ask people to expose themselves and their kids. SO Cary stayed home with all the sick kiddos, and I made the trip to LA alone. I think it was harder on Cary than me!  

ok, as far as the cancer goes, we had a bit of a set back, but it's all good. PET scan showed and "inflamed" lymph node up in my neck. It could be me just fighting an infection- or it could be cancer. Either way, Dr. Soukiasian will be removing it come the 7th anyway. We will find out if it was cancerous  about a week after surgery when the pathology reports come back.

I will post more detail tomorrow about what we talked about, but for now I am just so pooped I think I am very close to falling asleep while sittin........ zzzz......

I am just walking like a mad person to try to get in as much outside time as I can ~ as well as trying to make sure my recovery is as good as it can be.

Bunches of new tests coming up. We are trying to get them all done in 2 days (this upcoming Thursday and Friday) so we won't have to keep making trips up to LA every SINGLE day, so I will have a bit of a marathon for those couple of days. I have the kids all farmed out to different friends on Thursday, and Haley (Cary's beautiful daughter) will come up on. Friday to take care of them. Thank you to all who are helping with that. Also, I wanted to clarify exactly who family is, so you don't all get confused when I start mentioning names and I have forgotten to introduce them properly...

Dad AKA Cary	Mom AKA me	Carly	Josh	Haley
Aaron	Daniel	Nathan	Jonah	Ben
jasper	Grrrrr

Well, still no PET scan result, but they must not have been too horrid. I will call on monday if I don't get a call by then.

I did get a call from Dr Soukiasian's ( the surgeon) nurse. I was trying to find out the name of the surgery ( there are different TYPES of  esophagectomies ) and she told me it was kind of a hybrid of different types of Minimally Invasive Laparoscopic  surgery. But the basics will still be the same. Dr Soukiasian will turn my tummy into a tube to function as my new esophagus. Long story short.

I found a site that a daughter is keeping for her dad who just underwent surgery that I found really helpful. I know a lot of you have been asking and asking what we should expect next, and I just stare blankly into space because I have no clue. Bearing in mind that everyone is different, I am posting a link to that site so you can kind of get an idea. I believe he had his surgery all in one day, and I will be having mine split into two, but the idea is the same. Here it is, and I love the title by the way... (Warmest thanks to them for giving me permission to link to my site as well as the wonderful letters of support.)

As far as dates, June 4th is a short day. Exploratory, take a peek around, put in whatever ports or tubes I need, push through tissue that doesn't want to be pushed, that sort of thing. On June 7th, well that will be the big 'un.  I will then be esophagus free from that day on. Well, sort of.

I will be in the hospital 7 to 10 days.

Another PET scan today. this time it will be of the whole body to make sure no little critters escaped. I am much happier this time as I could actually eat my protein this time instead of pureeing it. I had eggs last night for dinner! I will let you know what it says as soon as I know :)

 I think this facility needs to be taught about the wheel...

more favorite quotes

"we should ask the scientists to change our car into a drill so we could dig deep in the earth to search for dinosaur bones, and diamonds and mole people." - my son Nathan

"...those kids fight like wild chimpanzees on steroids and cocaine. Enough to where you may want to break it up with a broom stick rather risk a infected secondary wound." - My husband talking about our youngest sons.

"This is to all us guys who do dishes. Do not wash a piece of Tupperware...you used to soak a carburetor in gas and carb cleaning liquid... in the dishwasher."  - my hubby

" Mom, make sure you take a deep breath and bring an extra pencil with a BIG eraser".  - Nathan when I told him I had to get lots of tests done in L.A.

When I asked my son Ben if I could help catch the bad guys, he very seriously looked at me and said, " No Mom ~ deep sigh~  I work alone.".

"Mom, could you please pause the story, I need to get a  drink of water." - Ben when I was reading to him one night.

"That Joe don't have a very good memory does he Mom." - Ben while watching a Blues Clues  episode where Joe was trying to get the kids to guess the answer.

When I told Jonah he needed to get dressed for school before he watched TV , he said " MAN, no'fin  'bout dis is wight!"

I was reading to the boys, "The Berenstien Bears, Too Much TV", the part when Momma Bear says no TV for a week, and Nathan said " and that's mean right?"

 

Not a quote, but I LOVED it when Jonah figured out how to "work the system" at school. He noticed when he was riding the bike at school other kids would do pesky things like ask for a turn. He figured out that if he used the scooter track instead of  the bike track ~ the kids would forget about him and go play something else.  What a smart kid!

Oh and on a scale from 1 to 10 my pain level is a big fat 0 !!!!!!

Nothing really new, just enjoying my kids while I can. My 6 year old is really clingy and VERY dramatic these days. I really have to struggle to keep a straight face with some of the things he says. I know he is feeling things very deeply right now, and I never want to make him feel I am laughing at that, but it is SO dang hard when I say
"Jonah, please go get dressed and brush your teeth before you watch TV."
He replies very dramatically, "Man... nofin' 'bout dis is wight.".
Or when I say, "Jonah, it is time to get up!" and he says
"But Mom, I weawy (really) need my beauty sweep."
Or when my dear sweet friend comes over (she just had her eyebrows waxed) and he says,
" WHAT HAPPIN TO YOU FACE!!!!????"

Oh my.

My 5 year old asked me today ,
"What happen if I pee on a electric plug mom, would I die?".
Mom: "Ummmm... yes. Please don't try it.".
Ben: "But what if I just try on a side?".
Mom, "Yup, still would die - Ooo- look at those horses!". 


I love my boys.

Well, I have been enjoying lots more days of feeling good so I've been trying to take advantage of it as much as possible. I put in all my mothers day flowers in the front yard and on the front porch. Very pretty I might say.

I have been recording all sorts of lullabies and myself reading books for my kids when I am in the hospital again. They can follow along with my voice with the book in front of them ~ while I am out cold in the operating room. Believe me, with my voice as yucky as it is, it is nothing fancy, just me sending my love to my little ones.

Another idea was that I get teddy bears with t-shirts that have my pic ironed on them. Then the "Momma Bears" can be there to snuggle my babies when I can't.

I  am trying my darnest to just enjoy this time I have before all the big hairy scary stuff, but it gets hard not to worry.

Well, turns out I was the party pooper on Mothers day. My kids were absolute angels. I got a wonderful card from Daniel that told all the things he liked about me being his mom (made me bawl) , Nathan made me a beautiful painted fingerprint pic of a sunflower, framed with popsicle sticks, Jonah made me an adorable recipe holder with a pic of him dressed up as a chef and a sweet card,  Ben colored me a card and grew 4 marigolds (from seeds!) for me, and Cary (besides the dinner thing) is having me pick out plants for the front yard and porch.

Today I am much better though. I am up and going strong. I am walking (slow as a a snail) every day now - I want to be in as good of shape as I can before I go under the knife. I have along way to go before I can join my friend BJ on any of his Marathons mind you, but I think it gives me much more energy just to get out in the open air and get off my butt.

So, because Cary has to work on Mothers day, and we have yet to see one when:

A. a child did not throw up violently
B. a child did not throw a hissy fit
C.A child did not throw up violently in church
D. a child did not throw a hissy fit in church
or
E. All of the above,

my hubby has decreed that mothers day at our house last all weekend. Not a bad idea. Cary and I started out the weekend by going out to dinner sans throwing up or hissy fit throwing kids. It was really nice to spend time with him, and I actually ate normal food!

My boys each gave me their mothers day presents they made in school (except Nathan, He said I had to wait until Sunday...)  They were all so sweet and tender. Moms get such an unnatural kick out of spray painted juice bottles and egg carton flowers. We wouldn't trade them for all the lalique or lladro' in the world.

No more pokes, prods or needles until the 20th of May when I have to have another PET scan! Yesterdays doctor appointment yesterday went very well. Aaron, Cary's son came down to watch the kids while we went up to LA. He is such an amazing person. All Cary's kids are! I just adore all of them.


I am bit worn out but OK I guess. I am able to eat almost anything except meats and breads if there is an abundance of non tomato based sauces or gravies. Chips are still a no no as well, but I really don't need them anyway. Gotta get in shape for that strip dancing class I wanna take next time I head to Vegas...

Well, DARN it! I won't be able to practice on the subway like I had planned...