just tired

4
nothing new today, just really tired. I am starting to slowly but surely get things packed. Don't expect to come into my house and see a whole bunch of boxes all taped up and ready to go~ I just did the little boys books today. Carly has been working on boxing up all the "extras" like CDs and DVDs we haven't watched in like 8 years as well as helping me with the boys. I think we are wearing that poor girl out!

before I go, I wanted to make sure you all knew what to do if you encounter a mountain lion... You NEVER know....

 OK, all of you who kinda of snickered, vs all of you that said  "ewwwwwww..... " - let see a show of hands....

many thanks...

3-8
Ok here people, I have been trying to keep a notebook of all the kind things people have done for us. I am trying my best to make sure I either call you personally or at the very least send a thank you card, but you guys are WAY ahead of me. PLEASE forgive me if I do not get all my notes written or calls made. I truly DO appreciate all you are doing for me and need for you each to feel the love and gratitude wafting your way. I could never do this without all of you!  In all humility, we~ the Clark family as a whole, as well as a sicko chick  that is going to get better, thank you with all our hearts. You are angels.

Sending you all my love because ....

got the tatts....

2-7

the tattoos aren't nearly as exciting as I hoped they  would be. Just little tiny freckles on my belly and sides. My sis suggested I let my kids come up with new "connect the dot" pictures each week. Since I only got three dots, it should be pretty easy for them to come up with some pretty clever ideas...

OK, so here is the scoop as I understand it... I will go into LA on the 9th. My radiation starts on the 10th . I will start oral chemo at that time. Then on the 15th I will start the intravenous chemo. Radiation will be 5 days a week, oral chemo ( the pills) will be taken every day for as long as I can keep swallowing them ( the hope is that the tumor will start to shrink before my esophagus starts to swell from all the radiation - so they won't have to do what is called a "portacath"  ) and the intravenous chemo will be given as often as my body can take it. 

Also, I got approved for the hospital housing! HOORAYYYYY!  I will stay in a hotel until about the 18th, then move into the hospital owned apartment. The treatments go for 5 1/2 weeks (March 10th to April 16th). Then I get to "rest" for  6 weeks, then get the surgical part done. During the "rest" part is when we are scheduled to move so that should be interesting.

The next part is for the local people, so please forgive me for being kinda boring.... I also do not in the LEAST want to sound demanding or presumptuous, so  please know this is written with the understanding that MANY of you have asked what you can do to help. In all humility, I submit the following. If you are far away, or just have too much on your plate right now, please just skip right to the bottom....

The only thing I will need for me personally is a ride from home up to Cedars each Monday morning (leaving  about 9:30 a.m.) for those 5 weeks. That would be 3/15, 3/22,  3/29, 4/5 and 4/12. Cary will come bring me home on Fridays.

The times I will need physical help, will be after March 20th when our sweet Carly has to go pack up her things to FINALLY get reunited with her wonderful husband. He has been serving his country in Iraq up 'til now, but gets to finish up in beautiful upstate New York.

The things I need help with are mostly things having to do with my kids.  The bus comes at exactly the same time as the older kids get out of school, so we might need someone to come meet the bus while Cary runs to pick up kids ( 3:20) Tuesday through Friday.  Another thing we need help with would be making sure Jonah got home from Kindergarten (2:00), helping kids with homework, doing school projects and make sure they get dinner on Tues nights.  (Cary has to leave for work by 4:30 on  Tuesdays ). Then, we will need someone to help get them ready for bed, tuck them in, and read them stories. We would need some sweet soul to spend each Tuesday night in our guestroom while Cary is at work. That is just so if the kids get scared or if there is an emergency.  Hubby comes home at 6:00 am and will take over from there.  

I will be home on the weekends (hopefully)  so I can cover the every other Saturday night and every Sunday night although I might need help with dinners...

Our next door neighbor has graciously offered to help with Mondays, and Cary has Wednesday, Thursday, Friday and every other Saturday off to cover the rest of the week. Poor Cary will just be flying solo.

Once school gets out, Cary's other beautiful children ( Haley and Aaron) have offered to trade off and cover the summer ( I feel so blessed to have them in my life by the way...)  and just in time for my surgery.

Please, if any of these time slots look like they could work, contact Cleo as she has the main schedule. 

Also please note that any getting kids off the bus or picking them up will require me to first submit your name to the schools/bus company so they can know you are not just some stranger abducting my kid.  Please, for my sanity's sake and the schools, if you are planning on helping that way, please let me know ahead of time so I can make sure your name is on those lists. thank you so much.

Ok back to including everyone... Boy I felt so cliquish! (sorry....)

boy I can ramble when I wanna !  Anyway, all the love and support and prayers are DEFINITELY being felt. I cannot thank all of you enough... so with that,I leave you with this.....

hooray!

Whole bunch of good news!

 #1 PET scan came back "as good as it can get" for a person with cancer. Everything is completely localized so much so that I was "downgraded" from a T3 M1 to a T3 N1. Doesn't sound like much I know, but dang it it is HUGE!!!!(trust me)

#2 Upper GI came back with really good results as well. Showed EXACTLY where all obstruction is. Again - all very localized.

#3 Radiologist put my name in for the hospital to consider as a candidate to use one of the two hospital owned apartments in the area! If the apartments are both not available and they find that the need is still great, they will help pay for a hotel!   Please pray I can get qualified for that as that would save a WHOLE lot of stress and worry as well as precious finances!!! I would still come home on the weekends to see my sweet family though; I couldn't do this without them.

I go in tomorrow for the "simulation". A mock up of how exactly they will line up the eternal beam of radiation. I will get to get 4 tiny little tattoos on my midriff area to mark exactly where they have to line me up each day to "zap" me. They will just be little polka dots, about the size of freckles, but I was really hoping for a snake to connect the dots - or,  oooo.... maybe a big Mauri warrior design....  Whaddya think?!

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 ...