Monthly Archives: August 2011

Our Favorite Spot in Monterey, CA

This was taken in Monterey at our favorite park when Shann was 5 I think…..I took the picture…Shann was running in the park…


Some interesting things I learned about my daughter this weekend.

1. PA LOVES horses. Well PA loves all animals. This was her first experience with horses & I was sure that she would be intimidated with their size, but NO, she was good with the fact that she was the size of one of their legs. She had no fear.

2. I already knew she was terrified of flies. I was afraid of the reaction to the flies and was not disappointed. She was fine when she was around the horses she did not notice them, but just walking around the ranch well it was meltdown time. It was almost funny how she is fine with a huge animal like a horse, but little fly landing on her or ant crawling on her was too much.
3. PA becoming so relaxed on a horse took me by complete surprise. WOW, she got on the horse (bareback) and as soon as she was on the horse well her shoulders & whole body relaxed, she took a deep breath & looked like she would fall asleep right there on the horses back. She leaned over & hugged the horse. It surprised me because I have never seen her do that with anything. I have seen her relaxed but not like that. It was surreal and made me smile. She came alive on that horse.
4. Again (this is worth repeating), PA is terrified of bugs in general… That night & the days following have been full of PA saying “A BUG! A BUG!” Every speck of dirt every piece of string on the floor is a bug. In fact, Sat. night she woke up in the middle of the night screaming “An Ant! Ant is on me! Get it off!” It has been rather unnerving hearing her scream every couple of minutes. I am beginning to think she is hallucinating because she says they are under her skin. I am not sure if she will be able to get over this to able to ride on a regular basis. I am going to do my best to try to get her to be able to tolerate bugs so she can ride.

This is PA & her 16yr old sister Shann..

PA’s Doll

PA has taken to using the Buda my father got in Korea (30+ years ago & its cherry wood) as a doll. Seems every day I get up and it has a new dress on. I thought it was CUTE.
Oh, and she does kiss the Buda which is kind of weird but whatever…..

Who Am I?

Who am i?
To sum up the answer to this question I would say this. “I am a combination of my genetics, my past experiences & no relation to who I ever thought I would become.” I know I did not answer the question so; I will try my best at a subject I really do not know the answer to. Therefore, I get to fumble my way through this mystery. Maybe I will learn something about myself.

This is a funny question for me, partly because I have not thought about it in so long. I really focus on the here and now. I try not to focus on the past or the future. I think because both are painful for me to look at. The past for the horrible things I was put through and the future because well I honestly do not know how long I will be around and I do not like to think about it. I can honestly tell you I am not the person I thought I would become.

I am sure I had big dreams growing up, but I do not remember them. There are huge chunks of my past I cannot remember and it has always bothered me. I often rely on help from family members for help.
Before I really try to tackle this question, let me give you a little background. I was first born & have three biological sisters. My father was in the Army and obsessed about WWII. We lived in Germany until I was 11. I think LOL as I do not quite remember (how sad is that?). I do have vivid memories of traveling as a kid & visiting anything of significance to WWII. It really was quite an education to say the least & I am happy I remember most of the places we went.

We lived in so many places and I went to so many schools I could not begin to list. As a result, I never learned how to fit in. I never really made friends and honestly did not really care, as I was in my own world. It is not that I did not want to fit in or not have friends. I was almost incapable of this task. Was not until high school that I really started to make headway in that area, but I have never truly fit in even to this day I really struggle with this.
Being I had some truly horrible things happen to me, I will not go into any detail just suffice to say everyone has things happen. They changes us mold us into who we are.

I do not remember ever really thinking about what I was going to be when I grow up like most kids. Therefore, I cannot even say what I thought I might do. I was not encouraged to do anything really (part of my not so great past). I did awful in school & held back in the 5th grade. Now this was even worse because my one sister was 11 months younger than I was. Let us just say this was emotionally devastating to me in many ways. I guess I just stopped trying.

Fast forward a few years to after I got married, I tried for years to forget my past and well was quite successful *laughing* cause I still don’t remember much to this day.

I live by a few rules (though not rules as many as Gibbs (from NCIS))…I am also not perfect and I do stray from my rules on occasion.

First is the golden rule with a bit of Karma mixed in Do unto others, as you would have done unto you. I believe if you do not it will come back and bite you in the butt. I truly believe if I do not then it will come back to me 10 fold. I have learned this lesson a few times and do my best to live by this. I am the one who will let someone cut in front of me and not really fuss about it.

Second, if you do not have anything nice to say do not say anything at all. I have my grandma to thank for this one. I heard it constantly growing up and just kind of adopted it because well it just makes sense. I am not perfect. I try hard to be as nice as I can to everyone. I try to empathize & comfort when I see someone who needs it.

I do not like to dwell on my problems or troubles. If I did, I would not be a very nice person and no one would want to be around me. I try to be grateful for what I have. I have a wonderful husband and kids. I am blessed.

The best answer I can give is I am a child of God. I try to live my life in a way that would please him.

Zucchini Cookies with Wheat Flour & 1/2 the Sugar

I have been redoing some recipes for my husband who is diabetic. Most of what I do is try to substitute at least ½ the sugar with Splenda and use wheat flour whenever possible. This is not sugar free. I used half sugar & half Splenda . I also used whole-wheat flour instead of white flour. I have tweaked a few recipes in hope to make low sugar and tasty cookies and snacks. I have done this with a few recipes & hope to post more soon. For now, here is a Zucchini Cookie recipe I think I have perfected. At least my family and husband like it. I have the Nutrition information is at the bottom. The nutrition information is approximate. I used a special calculator to do it.
I hope you all try it and enjoy it as well.

Zucchini Cookies½ c. brown sugar
¼ c. butter flavor Crisco
¼ c. Butter
½ c. sugar
½ c. Splenda
2c. Zucchini shredded
2 ¼ c. Wheat Flour
¾ c. vanilla soy milk
1 tsp baking soda
3 tsp cinnamon
3 tsp pumpkin pie spice
1 c. raisins
Cream together sugar, Crisco, brown sugar & milk.
Add in other ingredients
Mix well
Drop cookies on cookie sheet
Bake 375 degrees for 8-12 min.

Nutrition informationAmount Per Serving:
24 serving per batch
Calories 169.8
Total Fat 4.4g
Cholesterol 5.2mg
Sodium 220.2mg
Total Carbs 38.2g
Dietary Fiber 1.9g
Sugars 27.1g
Protein 2.1g

I was invited to A Patient Education Conference

I signed up this past weekend to go to Stanford University. They are putting on a Neuroendocrine Tumor Patient Education Conference the weekend of September 9. It is the second year they have done this. Best of all it is free. They are having a fundraising event on Fri. night it is moonlight in Palo Alto.

This is going to be information packed weekend with lectures. It means I get a chance to talk to more people about this & raise awareness to this otherwise unheard of cancer. Even though there are more & more people diagnosed with this it is still relatively unheard of.

Because it is at Stanford University, it means I have to get a hotel room. I am fortunate to be sharing the cost of this with a friend. She is also a Carcinoid Cancer patient. This will also be the first time away from my family for more than a few hours (with the exception of when I was in hospital). This will be a weekend away 
Now I need to try to put aside some money for this. It is not going to cost a lot of money. I can eat cheap & I do not have to sleep at the Hyatt. I do however want to stay somewhere a step up from the Motel 6.

Here is the lineup of lectures:
10:00-10-10 Welcome & Introduction
10:10-10:30 Neuroendocrine Tumor 101
10:30-11:00 Surgery for NETs: Disease-Specific Issues & Opportunities
11:00-11:30 The Many Faces of Radiation: PRRT, Radioembolization, Stereotactic Radiosurgery
11:30-12:00 Nutrition: What to eat
12:00-1:00 Lunch break (of course LOL)
1:00-1:45 Tumor Board Discussions
1:45-2:15 Carcinoid Syndrome: Complications & Management
2:15-3:15 Panel: Hot Topics in Care
3:15-3:45 Break (posters on display)
3:45-4:30 Panel: Psychosocial Aspects of Advanced Disease
4:30-5:15 Looking to the Future the Power of Research
Clinical Trials 101
Current Clinical Trials
5:15-6:15 Appetizers & Poster Session
6:15 Adjourn

I am really hoping to get some information to help me better manage this cancer & make my life better. I hope I can pull this off & go. I almost feel like if I cannot get help from my doctor’s maybe I can get some information to go back & present to them & make my case for seeing a specialist.
Wish me luck in getting it all together.

Two Eggs, Water & Lemon Juice

Last week PA was in the kitchen and found a brownie mix & decided she needed to make it. At this point, I did not know what she was doing. She kept repeatedly saying “I need two eggs, water & lemon juice.” She was doing well with the echoing. I tried for half an hour trying to figure out why she was telling me this. After just asking her what she was doing did not work, I asked to show me what she wanted.

She brought me the brownie mix box her dad & sister bought a few days prior. I was curious as to how she knew what she needed to make them. I told her to point to the part on the box where it told her how to make them

She pointed to the pictures & said, “See mama two eggs, water & lemon juice”. First thought was WOW she is good! I thought it was funny that she thought the oil was lemon juice, but she read the pictures. To me this was huge. She has never done anything like that. Look at something & figure out where or what are the instructions without ever being shown.

Then again, this same kid can reprogram my cell phone & bypass the security settings on her dad’s iPad. She is a smart kid. She just cannot articulate herself to make us understand what she wants or how she is feeling. As frustrating as it is for us in understanding her, I have to remember how it must be for her trying to communicate with us.