grrr....

2-8

I was feeling all proud of myself because I got up, got all the kids ready and made it into the church parking lot. I then proceeded to get really sick. That coupled with the fact that Cary hadn't slept and was hacking up a lung, convinced us both that we needed to go back home. I am really sorry to have missed church. I truly enjoy it and it was just such a bummer to miss while I still can go. I guess about 2 to 3 weeks into chemo, I won't be able to go to church, so I was hoping to go as much as I could before all that started. Blech. 

Going into LA for a PET scan tomorrow.  The PET scan works by tracking down a sugar the medical technician puts in me about an hour before the test. Since cancer apparently gobbles up that sugar faster than other parts of the body, I was told that in order to get an accurate test, I could not have any sugars ( ok understood ) or Carbohydrates (WHAT???) 24 hours before the test. 

OK, that leaves protein right?...  well, even protein shakes have a small amount of carbs or sugars in them! I looked at my baby food jars and was shocked to see that they added cornstach - so that added carbs.

SSooooo, what is high in protein....has no sugar and no carbs....
steak...nope.... pork chops... nope...shrimp... nope...ooo I know, deli meats, oh wait, nope.... CANT SWALLOW any of them...I have to stay healthy and maintain my weight so no feeding tubey tube come my way...

I ended up getting a pouch of salmon and pureeing it with water. hmmm.... jury is still out on that one...I have canned chicken planned for dinner. Won't be pureeing that baby up until I ABSOLUTELY have to though (*involuntary shudder* - ok be honest, how many of you did that shudder with me?! )


Complain... complain.... complain.... If you all get too sick of hearing it from me, please don't worry, I have been thinking of installing this new complain button for when I get TOO whiny. Let me know what you think.... :)

short one today

 6
Yesterday was a nice day. I got a lot accomplished, but by the end of the day I was pretty pooped. helped cary organize the garage so he could change out our brakes, folded clothes, did laundry and went to Nathans new scout leaders home for dinner and a wonderful evening. I was tickled Nathan got to interact with them and feel so comfortable. He is SO excited to start scouts!

I'm not gonna loose my hair!!!!

Woo HOO, looks like I am not going bald anytime soon. The chemo drugs I will be on are Oxaliplatinim and Xeloda (kinda sounds like fantasy amazon princess' names huh?) The main side effect I will have is nausea! Heck I lived through 4 pregnancies and even threw up on a guy in Fry's Electronic store.  I can DO nausea!

I did not get exact time lines and start dates yet, but I did get more general time frames. I got  PET scan and a consult with the Radiation Therapist on Monday, so it won't be long after that I will be able to start the full chemo and radiation.

The bad news is, I will most likely have to stay up in LA during the week and only come home on the weekends. I will miss my babies something fierce, but if this is what it takes to get better, than so be it. I know they are in good hands with Carly and my husband, I will just miss them more than I can think about right now.

My sister left for Virginia today, it was so nice to have her here. Daniel was feeling anger and frustration and worry (pretty expected and VERY normal) , so she took him for the afternoon one day to just spend some one on one time with him. It really helped him I think.  Nathan is moving slower and gets distracted easier than normal, but again, completely expected. Jonah drew a map for his teacher to "planet X" ( the baseball diamond). The cool part is, he drew it ACCURATELY! :) When there was a turn in the map, he turned! What a smartie! Ben is doing great. All the boys adore Carly, but man, he just melts into her for hugs. It is such a huge comfort to me. I have made sure they all have very strong support systems in place @ school as well, so I can feel confident they will be ok  when I leave. ..... I still will miss them though....

The meetings with the oncologist and the surgeon were very uplifting and  full of promise. The surgeon even said,  "I don't treat cancer, I cure it." Now that is what I like to hear! We are so tickled that I am even being considered for a LAPAROSCOPIC  surgery! He is the only doctor that does this on such late stage tumors. He is also pioneering a new technique that injects my pyloric valve with botox instead of cutting it during this operation. Long story short, that means MANY fewer potential complications after the surgery is over, and a MUCH faster recovery. 


SO , it is on to getting better! 


Before I go, I wanted to recommend this cute little out of the way place I found...

THANK YOU MADDIES PARENTS!!!!!!!

Surgeon and oncologist appointment tomorrow in L.A.  Hooray! I will know a lot more about dates and time frames tomorrow and I promise I will post asap.

Non cancer related:

Big triennial I.E.P.(Individualized Education Plan) for Jonah today. I was pretty pooped, but luckily Carly came with me. She got to sign her first IEP today!

I  was in the IEP with Carly and had asked the school to please have Jonah brought to me at the end of his school day. They assured me Child Care would go get him and bring him to us.  BUT somehow he slipped out of the gate without anyone noticing before they were able to get him. He then proceeded to walk home completely alone. Luckily a wonderful couple saw him. I have always told him not to get in the car with "strangers" so of course he ran away from them when they tried to help. They thankfully did not give up and followed him home to make sure he was safe. Imagine my husband's shock (!) when a little boy was standing at the door - with no mommy, no Carly and a pair of people asking if this little boy lived here! Imagine now, the drop in the pit of my stomach when Cary called me and told me Jonah was home and how.

To Madilyns parents, I am SO amazingly thankful  for you and what you did today.  My children are my life the idea that he potentially could have been in harms way made me physically ill. 
 
I thank the Lord above there are wonderful people out there like you to protect our sweet babies.Thank you just doesn't seem to cut it...

The school is now instigating a new policy that makes certain aides responsible for the actual physical hand off of the child to the parent. think I'll go throw up now....

HUGE VICTORY!!!!

We were able to get it approved to have the primary care physician just sign everything - not only that, ALL REFERRALS have  gone through and I have authorization #s in my hot little hands!!!!!
WOOOO HOOOO!!!!!!

got a lot accomplished today ~ well, at least by my standards...

I get tired by afternoon, so I try my best to get as much done in the AM as possible. Today it was the making of the phone calls  to try to get it approved to have my new primary care physician waive the usual first visit thing and just sign all the referrals. All the diagnoses and tests have pretty much been done. I might need another CAT scan or even a PET scan, but those can be ordered after I see the oncologist.

 My sister is in town for the weekend, which has been really nice. WAY too long in between visits.... Anyhow, today we left about 8:30 and went shopping! Wait, before you get all excited about that new purse or pair of shoes~ they don't exist. We shopped for wonderful things like pillows that help keep nasty germs away, pillow cases that will not pull what is left of my hair out once I start chemo, but most importantly, we shopped for BABY FOOD! Strained peaches and carrots and ham, OH my!

Such will be my new diet. We actually were able to find other things as well that I can eat, I am just so not excited about the baby food aspect of all this. Hey, whatever it takes to stay healthy!

I never in a million years dream I would be counting calories to keep them UP! I feel like I have entered.....
the Twilight Zone...(creepy theme music fades in....)

In a nutshell, the food I must eat can't be high in fat, cannot contain anything with acid  (like tomatoes, citrus or vinegar ) must be high in protein, must supply the fiber and nutrients I need ~ and it can't be any thicker than a thin paste.  Now before any of you out there start suggesting protein powders, health shakes and ensure, please know I have been living off these. I need variation in my diet or #1,  I don't get all the fruits, veggies and vitamins I need and #2,  I will probably loose my mind LONG before I  have surgery and get placed on a feeding tube. Since I don't want to add shock therapy to my regimen, I figure we should start looking around at different options.

We have come up with quite a few ideas actually, but if you can think of any more I am open!

hummus, thinned with beef broth (my fav)

soups put through the blender

whole bran cereals soaked in low fat milk until they fall apart

cream of wheat and oatmeal, made thinly

baby foods and cereals

low fat non yeast breads soaked in milk (like banana bread made with applesauce)

applesauce

yogurt

low fat puddings and custards

sorbets

that sort of thing.  Not very exciting, but luckily the Lord has blessed me enough to really think ALL food sounds nasty right now. And right now, I am not lactose intolerant ( apparently about half of the chemo patients undergoing treatment become lactose intolerant) so I can drink milk too.


Now for another gem ...

just getting started

First of all , to all those who have the need to make sure they are in the right place, this is Chemistry 101. We will start out by learning that Chemistry is the study of matter. Like physicists, chemists study the fundamental properties of matter and they also explore the interactions between matter and energy.




*snicker*.... I really am evil at heart...




Actually, I am here to help all those who know and love me (blush)  keep up with what is going on as I battle this yucky thing called cancer without calling each and every one of you. Now , don't get me wrong, I would LOVE to visit with each of you and see how everyone was doing , and ask about your kids and and your cats and the job, I really love that kind of stuff. But unfortunately I just can't. (DANG I hate time limitations and lack of energy!....) I will do my best to update this as often as I can, or perhaps even have someone do that for me when I am unable.

Here goes....




In October of 2009, My hubby rushed me to the emergency room when I choked on a mouthful of rice. I never stopped breathing, but I did start throwing up blood. Now, just a hint, if that ever happens, it's NOT a good thing... Lots of tests and 2 months later, I was diagnosed with esophageal cancer . We didn't know the stage yet, so, we went to a Dr Simon Lo with Cedars Sinai. Came back as stage T3 M1 .

Basically what that means is that it has broken through the walls of the esophagus and has entered the lymph nodes. The tumor is too big to operate on right now, but chemo and possibly radiation should shrink that puppy down to size. Once it gets more operable, I will have have the pleasure of having my whole esophagus and the upper portion of my tummy removed... I will spare you the details for now, 'cause it is particularly nasty.

I do have to tell all of you that fasted and prayed for me, I did get the doctors I needed even though the insurance company was being a butt-head about it. (Can I say butt-head on a family blog? Ah well, its MY blog, I can even say "Poop" if I want! .... I'm SUCH a potty mouth).

I do have to give kudos to the staff of Dr. Lo, Dr.Soukiasian AND the medical director of Cedars Sinai! They really went to bat for me and I will be forever grateful for that. The insurance wasn't budging, so by a pure MIRACLE we found a loophole. I am simply changing my primary care physician to one at Cedars!

But I digress. Once I recover from that operation, I will go in for more chemo to get the last traces of this little monster. I understand I will have to learn how to eat again ( fun! ~ sarcasm for those who missed that) , will have a feeding tube for WWWAAAYYY too long, and ...
I WILL NEVER BE ABLE TO EAT CHOCOLATE AGAIN IN MY WHOLE LIFE!!!! :(

*sigh... I suppose I can learn to live with that if it means I get to see my babies grow up.

I aint a' lyin' ~ I got a heck of a road ahead of me, but I am actually more worried about my husband and my sweet children.

For those of you locally, I thank you from the bottom of my heart for all you are doing and all you have offered to do. I am working with Cleo Garcia with the French Valley Ward to coordinate the things like meals, rides to the doctor, taking my kids to or from school, babysitting, and even helping my kids with their homework.

Seriously, my dear and wonderful friends, if you are local, please ~ we will need your time. We are trying to split it up into small blocks so that MOST of the sign ups will only take an hour or so. We DO NOT have definite time frames yet, but as soon as we get them, I will post them and make sure Cleo has them as well so she can start filling in all the time slots. Hey, if it's one thing we Mormons are good at , its getting organized on a big ol' scale.

If you are farther away and just REALLY feel the need to help, my sister has set up a website that will help us with everything from moving expenses (yup we gotta move in April) to the extra co-pays and gas we will use. Again to the local friends, your TIME is much more valuable to us.

For right now, Cary's beautiful oldest daughter, Carly is here staying with us. She has been SUCH a God send. She will have to leave the end of March to join her husband in New York, but until then , I am just so happy/grateful/appreciative to have her help (bit of an understatement I might add...).

So that's the story. Now I just want to share a bit of wisdom with all of you...




Please try to remember that now...