Uhh By Da Way March 31, 2008

Luke has come up with his own version of the English language. He is going to teach us a new language instead of conforming to the same language we all fluently speak. His new sentence he says is, “Uh, by da way.” Translations: The Insy Weensy Spider or just spider also works for this. Everyday we are starting to hear words out of his babbling we are so excited and then soon discover the word that we all know in English that is is saying really means some totally different. I think this fits his personality to a T. Luke is obsessed with putting his finger in his nose.  I thought I was a clever Mom and said, Luke don’t put your fingers in your nose or a spider will bite your finger.”  Luke now he is searching for a, “by da way,” up his nose. He runs around saying, “by da way, by da way,” while shoving his finger so high in his nose that he makes it bleed. That was a very BAD Mommy move. Then this evening at a wonderful family dinner where 2 of the 3 children had already had time outs.  Adam asks Russ, “where does Ham comes from.” Russ so eloquently says at our dinner table, “A pigs butt.” Guess what new words little Luke starts chanting? Yes, you got it, “Pigs Butt, Pigs Butt.” I don’t let the children say butt I would rather they say bottom or bum. Now here at my wonderful family dinner all I can hear is the chiming of Pigs Butt. (This is when being the only girl in the family is very apparent.)  My sweet dear husband has found a new way to completely embarrass his wife. Because you know tomorrow out in public my little Luke will show off his new words. Oh you just got to love this!!!

Easter Fun March 26, 2008

We went to AZ for a family reunion. We camped at a place called “Dancing Apache” (or just “DA”). It was lots of fun. The kids enjoyed jumping in the freezing river, shooting bow and arrows and just playing with their cousins. It was great to see all the family and catch up on things. Most of all I was so happy to be able to be there. It was a blessing that my health is back and I can go and do fun things. I love to go on vacation. Now, my definition of vacation with my little Luke has changed. I don’t have any rest and relaxation if he is involved. He is good at keeping me active and going. I do love nap time……:)

Adam’s REAL b-day was yesterday. We went to Sea World with our good friend Rachelle. It was lots of fun until we had this fabulous idea to take the kids to PF Chang’s after a long day at the park. We waited and waited to be seated. It was around 8 b-4 we sat down. I’m sure you can picture the melt downs. It was awful!!! We all left exhausted and vowed never ever to make that mistake again. Adam loved all of his b-day’s fake and real. He is enjoying all of his Puppies. I think I will post pictures of them and have you guess there names. That would be a fun game.

Adam March 20, 2008

My sweet little Adam is turning 5 years old. I can’t believe that our little guy is so big! 5 seems so old to me!

We had a leprechaun visit our house after Tyler spent hours setting the perfect trap for him. He tested and re-tested his trap dozens of time to make sure there would be no injury to the Leprechaun. The Leprechaun made a mess of the house and turned the milk a greenish blue and left a note and a picture for the boys. They were so thrilled and excited – they have shown everyone! Tyler had his three wishes already planned out for when he caught the Leprechaun.

Tyler’s Wishes

1. To be Harry Potter

2. To have Hogwarts

3. Diagon Alley

Tyler shared his wishes with Adam as they were going to sleep. Adam starts crying hysterically. He was a mess when he came into the room. He couldn’t even get the words out to explain to Russ what he was crying about. Finally Russ got him to calm down enough to hear the problem. He said that Tyler was going to wish to be Harry Potter. If that happened, then Tyler wouldn’t be in our family anymore. Then he started crying more. Russ reassured Adam that Tyler would stay in our family even if he was Harry Potter. Then Adam went back to bed where Tyler said he would wish Adam could be Ron so they could be together and Leia the dog could be Hermione. It was the sweetest thing!!!

Adam had his Doggie party today. He was thrilled to pieces and was sure this was the best party ever!! He loves it when Mommy throws parties. He now has 18 doggies which he loves. The names crack me up they are always:

Doggie, Brownie, Sleepy, Fuzzy, Army anything that describes what the dog looks like. It is very funny. This goes along with Adam’s thought process. When he gets to choose a name for things it is descriptive . For example, at school one day he was tasked with picking an Indian name. His teachers suggest names like walking turtle, black bear, etc. Adam picked “Indian Adam.” If you have a rubber duck, it’s name would be Duckie. Thinking about Adam’s names cracks me up. He is so literal. His real b-day is the 25th we did it early b/c of Easter and such. So he is calling his party a fake b-day party. When he tells you about his party it is, “at my fake b-day” we did such and such. He is adorable and I just cherish him! HAPPY BIRTHDAY

Confused March 20, 2008

So I talked to Dr. Snyder, who is a very kind man. He did tell me that if there was something behind the walls or inside the lining of my colon he would not be able to see it. He also explained how very rare it is to see Hodgkin’s go into the GI tract. I really do understand what rare means. I also know that I’m really good at being rare. So that doesn’t ease my mind. Karin also called to confirm Dr. Snyder’s thoughts.

Here are my concerns:

Positive PET scan

MRI shows thickening and an a-symmetry to it

So this tells me the PET was not a False Positive

I verified that a biopsy would not come back positive if it was taken in the wrong area

This THING could be in an area they can’t see

Me waiting to see if it eats through the lining and causes bleeding seems ludicrous! I would like to catch things b-4 they do damage. I would like to be proactive and save me the pain of going through Chemo and Radiation again.

I want to catch things at the earliest stages to prevent any chance of me having to go through chemo again. So I want to be 100% sure that this could not be cancer of any kind. I don’t care if we just ruled out one type of cancer but I want to make sure it isn’t any kind. My mind is not at ease that it is nothing. I am willing to wait and take the antibiotic and see if it is inflammation. Then if there is something still there in a month from now I think we should figure out what the heck it is b-4 it gets me fighting for my life again.

That is my little rant for the night.

Latest Update March 19, 2008

I was waiting for more answers before I posted but I will let you know what I know. The Biopsy came back Negative For Lymphoma. YEAY!!! The MRI shows an a-symmetrical thickening of the wall. So I’m not sure why 2 scans come back and show something and the biopsy shows nothing. Could this mean the things they are seeing in the scans are behind the lining where they can’t see? I’m not really sure. They are going to do a follow up MRI in a few months to see what is happening. I don’t feel like I can say I’m relived b/c I still feel sceptical. Maybe that is just part of the feelings you have after going through cancer. I would feel better if I had a clean scan. I talked to Michelle who is a nurse last night and she said go live up the next 3 months. Stressing won’t change anything it will only be worse on your body. Just live it up until they tell you something more. That is much easier said then done. I don’t know how to turn off the little voice in the back of my head. But I do a very good job keeping so busy that I don’t have time to think about it. At night when I have quiet time is when all the worries come rushing in. But what can I do? I am at the mercy of time and I know some things just take patience. Patience needs to be my new best friend. Patience is the word that has caused so much PAIN in my life. Maybe if I just embrace this concept with a loving heart then I will find peace. Patience in situations like this seems like torture me not bring peace. But this is me breathing and hoping to become one with patience. So everyone BREATH………

Days March 16, 2008

Have you ever realized how much can happen in one day?  Your whole life can change in a day.  You can do SO much or nothing at all.  Days seem to have more power than I realized.  When I stopped to think about Friday and all the whirlwind of emotions it seems like a whole week was packed into a day.  I remember when I gave birth to my boys. In the morning I was up doing laundry and a few hours later you have a new life wrapped in your arms.  Days are so precious.  How we choose to fill them can be life altering.   You can  have such  an impact on another person’s day.  I know so many times just a simple note, text, call, card or meal has changed my whole day.  A few minutes sacrificed by another person has such a huge impact on another’s life.   So often I’m just humbled to know  how many people care and spend time praying for my health.  What an amazingly powerful thing.  I know that no matter how awful my day goes there will always be moments of joy.  Finding the joy and kindness in the midst of trial can lift you no matter how low you are.  I’m thankful each and every day that my days are so blessed to have you a part of them.  Thank you all for all your love and support.  Silent or vocal, I can feel the healing that can be brought about by love.  Enjoy your day and marvel at how much can happen……

Silver Lining March 15, 2008

After all the doctors appointments and emotional breakdowns Friday there was a great ending. Mom took the kids overnight (The saint she is!). Russ took me to see the Broadway musical, “Wicked” and got us a hotel room for the night in Laguna. We had his firm educational lunch Sat morning in Laguna Hills so it was easier to stay up there for the night. It was such a fabulous play. It is my new favorite play! It was a great end to a really bad day. It was such a wonderful fun date with my hubby!!! He certainly made up for not being there earlier in the day.

We had the MRI today down in San Diego. It was at a different office so it was a new experience. They strapped me down and the machine was a long tube. All my other MRI’s were quick and a small circle that they would move not a tube. They put headphones on my head with music. Then all of the sudden I hear a really loud alarm go off. I jump and try to move my head back to see Russ. I thought it was a fire alarm and I was waiting for him to unstrap me so we could get out. This alarm was SO loud and kept going on and off. Then I realize this was the machine making the noise every-time it took a picture. The alarm then started speeding up like a machine gun and the machine was vibrating. It was terrifying. It was really unnerving. The only time I heard the Tech was when he told me to hold my breath. Then after 10 mins of taking the scan they came back to put the dye in. This was also different. All my other MRI’s had a blue or red dye that they would inject through an IV. They would stand there with me and watch me the whole time to see if I had a bad reaction. They would push it fast and I would get this funny taste and feel like I had to pee it would get really hot. Well this tech got the vein the first try and it didn’t hurt at all. He put clear dye in and it didn’t have any side effects. More alarms and pictures then it was over. It was over all the best MRI and the weirdest. I didn’t like the loud alarms – even Russ had ear plugs in. But hey they got the dye in with one stick. It was a HUGE success!!! We will have the results sometime next week from all the tests.

Friday Update March 15, 2008

On Friday I drove myself down to the hospital for my spa treatment. I didn’t sleep after 12pm. I left around 5:45am. Around 6:15 I started getting really sleepy so I called my Mother in law who I knew would be awake. I found out after talking with her that my father in law had passed out for over and hour and was in the hospital. They were doing all kinds of test to find out what happened this is the 2nd time. They still don’t know what is causing it but are home and happy now.

I arrive at the endoscopy office and you are filled in a room with people that are going to have procedures that none of them are looking forward to. I notice everyone has someone with them except me. I finally get called back after waiting an hour. (Why they have you come early only to have you wait is beyond me!) They take me back and explain that the doctor needs to do a biopsy and I should get sedated. SURPRISE!!! I thought they were just taking a look and it was going to be quick and no big deal. Then I find out it is a much bigger deal. HUM……. Flash backs from when I had my first MRI are coming back. I was alone again and they were going to give me bad news. I have no cell coverage so I have to stand naked with a little gown calling for a ride at the desk with and audience. 1st call to my brother who lives close. No answer. AHHHHH great what am I going to do now. I have no ride and they are going to drug me. Can you see the panic starting to build. Call Russ tell him change of plans they are sedating me and I need a ride. I said please call and figure out who will give me a ride and just make it happen I will be done in an hour and a half. My 5 min procedure was now and hour and a half. WHAT AHHHH!!!! Russ keeps asking questions and I’m just getting more upset b/c here I am alone and standing in front of a room full of people in a little gown. Then I have to list every family membersrs name on a paper that says they can pick me up and hear my medical information. I start writing Mom, Dad, Brother, Husband and the nurse said she unfortunately didn’t know there names so I would need to put there names down. I was a bit frazzled. So then I get hooked up to heart, pulse, oxygen & blood pressure monitors. You could just watch my pulse start from 80 and kept rising as the minutes went by. They tried to get and IV in blew the vein, tried again no luck. Called another nurse she tried no luck they have blown my veins. AHHHHH Pulse is now 100. Change of plans no sedation we would just go ahead with out meds. HELLO!!!!!! PANIC!!!! I can hear all the nurses saying what you aren’t sedating her. Are you sure? Why are you changing that scope it is bigger she isn’t sedated. I’m laying there and tears start streaming down my face. I can’t stop them. I try to hide them but I can’t stop. Then all my monitors start alarming. Nurses come running. What can we do I’m so sorry! Handed me a rag to wipe the tears. I was just so frightened this was a flash back of bone marrow biopsy and I was just sure they were going to find something and I would be there alone and I would fall apart! The alarms kept going off my pulse was 130 and my o2 was flat lining. They had me practice Lamaze breathing. Why was this TAKING SO LONG!!! I couldn’t calm down I was terrified of what they would find. Then we did the exam. It wasn’t as bad as I expected. I mean a bone marrow test was HORRIBLE this was uncomfortable and I wouldn’t recommend it to all my friends. It didn’t make my top ten list of things I wanted to experience in life. The found some spots took biopsy but over all looked good. It was over!!!! I was so HAPPY!!! Russ shows up after it was over only to find out he didn’t need to drive me after all. So he was a bit annoyed and I was still steaming about what and emotional roller coaster I went through. Then we were off to the ENT. Ear Nose and Throat Doc. It was uneventful. Going to put my on antibiotics to see if that makes the lump behind my ear go down and do a needle biopsy on it. I will have a hearing test to check the level of hearing loss in that ear. The dizzy spells he gave me meds for. It was quite and emotional day!

Yes, I dress up even when I go to the doctors. This is how my hair is coming in and what I looked like after my apoitment.  I was still alive!!!

What a Bummer March 14, 2008

                                

I had my GI appointment today. I have to say, that I like to think of myself as a lady and things of this nature are TOTALLY and completely humiliating to me. I know it is just a body part and just a fact of life, but I don’t even burp or pass gas in front of my husband. I just struggle with this issue of having a hot spot in my colon. I remember very clearly laying strapped to the radiation table thinking a silent prayer, “Thank you Lord, that I don’t have colon or cervical cancer b/c that would be much more embarrassing for me than what I feel now.” So maybe this is my new lesson in humility. I guess I didn’t overcome my ability to be embarrassed so we’re taking it to a whole new level. I go in tomorrow first thing to get a Sig Flex – whatever that means. I know it is going to be violating and involves enemas and scopes. AHHHHHHH

I took a sleeping pill at 7 so I could be up at 5 to be driving by 6am. Well now I have been awake for 3 hours and it is 3am. The sleeping pill sure did work for a few hours. Now I’m just up and worrying about a test I’m sure many have had done, but it is just so horrible sounding to me. I wish this was just a nightmare I could wake up from. Instead this is reality. What if he finds something? I’m going to end up staying in the fetal position and pray they drug me. NO sedation for me tomorrow so I can go to the ENT right afterwards. Going to be a full day of FUN! My friend said to think of this as a high end spa treatment. Some people pay good money for this kind of cleanse. So this is me thinking of my great day at the BUM spa.

This picture describes how I feel today! March 12, 2008

                                                         

I decided by the end of the day to cry. I know I have a bunch anxiety pent up and at some point I knew it would catch up to me. So after the bewitching hour (I like to call it) with the kids it had gone from bad to worse. By the time Russ walked in I had the tears rolling down my face. It is very hard! One you don’t want to worry and I hate being over concerned especially if it is nothing. Then on the other hand I feel every right to worry. I don’t feel I’m in any way a hypochondriac but this cancer stuff just messes with me. I hate letting people know b/c I don’t want them to worry if there is no reason to worry. Then on the other hand I need my support system or I would fall apart. So I’m just crying. That is my solution to this. I get to go to the first specialist tomorrow in stead of enjoying playgroup with my friends. That would make anyone cry! Well sorry for this post it is kinda a pity party. I’ll be better in the morning! I just need to sleep off all the anxiety. Can’t wait for a normal week again!!!