what the surgeon said

 I was just too tired to write sooner and the kids were all were fighting the flu. Now it is Hubbys turn. He is on the bed behind me totally miserable.


But as to the details of the surgery, it will be broken up into 2 parts.

Part 1 will be on June 4th. Check in will be at 5 am. with me having nothing to eat from midnight. surgery will start at around 7 ish and end at around noonish.  During this part Dr Soukiasian will do an endoscope to peek around on the inside of my esophagus. He will also do a laproscopic staging to physically see exactly the stage of cancer.  Then, if all goes well, he said he will remove some blood vessels around the stomach to prepare it for Monday. He will also place the feeding tube.  I will go home on Saturday hopefully around  noon or 1:00. A home health care nurse will follow up that weekend to make sure we are taking care of the feeding tube. and that all is going well.

Part 2 will be on the 7th. Again, check in will be @ 5am with surgery starting at around 7:00 ish. Insisions will be in my abdomen, right side and neck.  I will have my esophagus removed laproscopically, the stomach cut lengthwise and fitted as a tube, and finally stitched into place as my new esophagus. I will have drains and tubes in quite a few places and hubby will not be able to see me until 2 or 3 that afternoon.

here is a break down of what will happen and HOPEFULLY when:

*1-2 days in ICU
*up and walking within 24 to 48 hours
*feeding tube starts again on day 1
*walking every day
*every hour, must do coughing and breathing exercises
*physiological therapy ( basically a rough back massage to loosen up phlem and gross stuff)
*a swallow study done 5 to 7 days post surgery
 *if no leaks i start to drink fluids the next day
*ideally chest drain tubes would also be removed at that time, but depends on how I am doing.
*I get to have my own pain meds button (woo hoo)
*I will be in the hospital 7 to 10 days
*at home, feeding tube stays in for minimum of 3 months.
*dumping is a small risk, but nowhere near as large as it would have been without the botox being injected into my pyloric valve. (usually doctors just cut it and permanently damage it, but my surgeon injects it with botox to let it heal slowly on its own).I am pretty impressed by that BTW.

He did say that 60 to 80 percent of patients have SOME sort of complications but most of the time they are just nuisances rather that life threatening, especially where he does his incision in the neck instead of the chest.

According to him, for, me, I have about a 20 percent chance of leakage because of the radiation I had done. Radiation destroys blood vessels and causes scar tissue to form. It also inhibits healing. I am not that worried though, because he does his incision in the neck, not the chest. He said that if there is a leak in the neck, its not that big of a deal, drain it and I will be fine. If the insision were in the chest, if there were a leak, it could kill me. Since that is not an option, I really dont mind a big scar on the side of my neck...

The risk of death during this surgery for me will be anywhere from 1 to 4 percent.  Not to bad considering the "high rent district" he will be mucking about in!!!

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.

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...

I am feeling better and better! I was able to get the boys off to school, unpack the boys bathroom and part of the boys books, and get the boys home from school. Then on top of that, I even made dinner! First time I cooked since January! Hey I gotta protect that mothers day present SOMEhow! I am pretty wiped out now, but I am so very happy I really don't care. Tomorrow might be a different story, but hey, I'll take the good days as I can get them. If anyone would have told me a year ago I would be so proud of myself for accomplishing this much in a whole day, I would have laughed out loud. Funny how perceptions change.

On a bit of a heavier note my friend from the kids school who fought off breast cancer has had a reoccurance. Bless her heart, the insurance would not approve a more aggressive initial treatment because it was not "medically necessary". I wonder if she was told the same thing I was when I was doing my arguing with the insurance company.

An HMO allows for "adequate" care not "the best" care. The fun part is how they said they determine "adequate" care. There is a possibility you have not received "adequate" care if you die, and your heirs can prove you did not die of the cancer. Isn't that so nice?!

Gotta love customer service!

I ate corn chowder last night for dinner ~ and it wasn't even pureed!!!! ( hallelujah chorus playing there in case you were wondering)... I still am a slow poke in most everything and still get pooped really easy, but I am getting better. Pretty soon I will actually be able to help my poor hubby with the boys. ~ and then I will have my surgery and he can  go back to the "single dad" thing. I think he aught to get a present for Mothers day this year, since I haven't cooked a single meal since January... sigh...