Monday, December 27, 2010

Tumor Board Today/I miss my Laura

Today is tumor board and we are supposed to hear the news...hopefully Dr. Shapiro remembers to call us. I am a little nervous but I think the worst thing they could tell us is get on a plane and head for San Fran. Yes sounds bad because of surgery but I would get to see Muir Woods again...I am trying to be positive.

Today I would like to let you meet one of my best friends. Laura Denise Bayles

Laura and I met in the 6th grade at Bush Elementary. She moved into our ward in the summer...right before my birthday. I remember going to Sunday School and someone telling me that there was a new cute girl in our class and that she was not just visiting! That made Emily and I very happy. There were not many girls our age in our neighborhood...just Emily and I until Laura came along and what a joy she has been. Laura came to my birthday party that year...and we have been friends ever since. We made it through Elementary School Junior High and then High School. Laura was always a bright spot in my life. I knew I would have a good time when Laura was around. Her smile/laugh was contagious and I could not help but be happy whenever I was around her. I looked forward to girls camp because I knew Laura would be there and she would never leave me alone. She is the type of girl who includes everyone and makes everyone feel good about themselves. She is a girl who truely cares about others and service is a part of her life she may not recognize because she just does it constantly. Laura is a perfect example of one who constantly shows Christ love. Her hugs are unforgetable and I love her.

Here are just a few pictures I gathered from facebook of my girl Laura...if I would have checked my mothers computer we would have found pictures from that birthday party along with many many other scary pictures of us growing up. Laura is leaving to serve a mission to Cambodia! She leaves on Saturday but last night was my last hug for a while. Maybe I cried.

You can tell she is full of life and love. Imma miss you Laura. I will never forget your kindness and love. Hug all the Cambodians for me and share that smile. I will never forget in church when you shared one of your favorite quote...I don't know it exactly but it was something like, "Never stop smiling because you never know who is falling in love with your smile"

I will make it 18 months...I will be here when you get back and I want another Laura hug as soon as you get home. I love you Laura and I will miss you more than you know. I will do whatever it takes to be here when you get home...I will be the first one in the church to hear your homecoming talk...with a smile on my face. Thanks for letting me be a part of your life. Love ya girl...


Friday, December 24, 2010

Back to the Tumor Board

I did not read my moms post so sorry if this is repeat. Yesterday I had my scan and the results sent me back to the Tumor Board where 25 to 40 doctors will review my current scan. That black whole we talked about...that needed to stay there...isn't there but he is not sure that it is regrowth. He (being Dr. Shapiro) is perplexed about the whole thing. He said that he has seen it before but he is not sure what it is. My mom probably did not tell you that they were considering taking me off temodar just in case I have to have a surgery soon. I almost feel like we will be heading back to San Fran sometime next year. He said that they cannot know what it is until they open me up and take it out but they do not want to do that. Dr. did end up putting me on Temodar and as for today I have not been unblinded for the trial. We really don't know anything yet but Dr. said that he would call us Monday night. I sure hope he remembers. It was weird to be ni the office and to hear him call me in on tumor board. I have a special case number and everything. So we are praying that Monday does not send me into surgery, The good thing is...I won't lose much hair if they have to shave it! :) Dr. says he really doesn't care about my hair. he said he likes me too and he thinks I am cute ( not in the freaky way). We have a special little bond my oncologist and I and at the end of the appointment I got to give him a hug while everyone else did the boring hand shake thing. I figured it is a good thing that my oncologist likes me...maybe he will be more encouraged. I will now forever on...suck up to my doctors...:) ha!

Merry Chrstmas everyone. I have not written in a long while but it has been a rough couple of weeks. Life goes on and I am still thankful for everyday. Every sunrise, sunset and rain. I love this world so much and I am thankful for my time. Remember Christ this season...I never realized this before but when people write or say Xmas, they are doing exactly what Satan wants...cross out Christ and put a big fat X. When did X become a replacement for Christ. I was definitely one of those who would abbreviate it without even thinking... it is kinda sad.

Anyway Merry Christmas

Thursday, December 23, 2010

Christmas Scan

This is Becky - Tara promised to update sometime soon; but she's just so busy right now... she wanted to make sure some news got on the blog; so here I go.
First of all, let me say how much our family really appreciates all those prayers in Tara's behalf and our family's behalf.  I can assure you we need them and feel the power of prayer.  Every scan is somewhat nerve wracking; but I was able to be at peace today going into the scan and doctor's appointment.  I know that is because of prayers.  We have been so touched as we hear stories of constant prayers in Tara's behalf.  I know our prayers are constant - it's always in our hearts; and we know there are many who struggle with health issues, and we feel for you.  We likely feel for you as we never have before....

Brain tumors are strange phenomenons.  It's hard to compare your tumor with the "norm".  Scott kept asking Shapiro today about what the "common" or other results are from others; and we couldn't get a good answer; because every person and every tumor is so different.  So, today inside Tara's brain we saw instead of a "black hole" a collapsed version of that hole.  Shapiro said it resembles a flower that has collapsed; which isn't necessarily bad. We were told a few months ago that hole should always stay empty; because they didn't want any tumor to grow back in that spot.  So, in that spot, we now see some fluid still ( there was fluid last scan) and we also saw "enhancements" - all I can say is it is "white stuff" in that area that Shapiro said has increased.  Scott & I wish NOTHING was going on inside that brain other than the fluid to disappear; but some of this could be good.  Because the tumor area has collapsed; it is now smaller.  Shapiro is going to present the MRI to the "tumor board" on Monday and then call us. The tumor board is a group of 25-40 doctors who review these scans and make a decision.  There is a chance Tara will need further surgery; but Shapiro said that the area in the brain with the enhancements would be "easy" to get out.  My mother's heart doesn't want Tara to go through surgery again; and I don't want anything happening inside her brain; but I learned months ago that this is not up to me. I can't write the script on this one. This is a lesson in patience and prayer for all of our family.  So, Shapiro said he would tell us when to worry; and he said not to worry now; so I'm trying really hard to be obedient and not worry.

Tara continues to smile through all of this.  She has experienced some more headaches the past 2 weeks; likely due to that fluid still inside her brain; but she says they're "not bad." I'm thinking "bad" is relative...  She is also tired from the Dilantin (seizure med); but Shapiro said she can now take all 4 pills at night so hopefully she won't be so tired during the day.  She starts round 4 of chemo tonight and we pray she won't be as sick as she was last month.  She is just happy to be here and to be in love with "her Joshua" and to have Christmas with her family.  She looks really cute with her new hair sprouting.  (she's always cute; but the hair is exciting!)

We came home from Barrows and drank our sparkling apple cider we saved to celebrate and we celebrated "life with Tara!"  We're just happy to be together for Christmas and to have Travis and Rachel here with us also.  That means on a semi regular basis; 10 people can be found at this house!  WOW!  I love it!

Thank you all so much for all your prayers and your "adoption" of Tara into your lives.  It's so much easier to get through this with our family and friends and those we don't even know who are praying for us.  What a great support group you are!

Friday, December 10, 2010

Merry Christmas to me!!!! :)

I am definitely officially in the Christmas mood.  Christmas music is all I let Joshua listen to and I drink my happy cup of 100% apple wassail heated almost-too-hot! :) I snuggle in my blankets and get to wear my winter hats! Oh I love Christmas. Josh and I are in the process of getting our tree and then Christmas will be ready to come! My sister found a new Christmas song which is pretty awesome. If you want to check it here! So I was going to write other things on this post but I just got back from the Doctor and I have some rather exciting news!

I don't know if you would call it peeking but I am almost sure that I will be getting what I really really wanted. It is the biggest present that I have ever wished for in my life!!! This may be the best Christmas ever!!! All I wanted was a clean scan and today I learned that it very well could happen. Today we became more sure that I am on AVASTIN!!!!! Yes, it may seem weird to be this excited to be receiving more chemotherapy but trust me...chemo has become my new best friend! For the past two infusions, I have noticed a slight almost headache. It doesn't hurt and does't really bother me. I get kinda hazy or dizzy and it just feels funny. Today I decided to tell the nurse about it. Earlier in the appointment we were speculating with the nurse whether or not I was on the medicine. She said that by the end of treatment she can usually tell if people are on it. No one in the hospital knows who is on it...not even the pharmacy who fills it. They all say "Avastin placebo." She told me that based on the previous side effects I have been having she thinks that there is a chance I could be on it. That made me happy! :) So 3 minutes later I tell her about the weird feeling and she gives me a look...a very good look. I said, "is this a side effect of Avastin?" She then said, " every one of our Avastin patients says almost exactly what you just said. (my heart starts pounding) and water...doesn't do that to you!" (In others words, I am probably not getting the placebo (water) in my veins). She gave me a smile and then walked out of the room. Maybe I started to cry of could this be possible?? ALL my dreams are coming true. I would have been good with the marriage and happiness and all but now...the very medicine we prayed for is running into my body helping to kill my cancer. I got control of my tears before she got back and replaced the happy tears with a beaming almost hurt I was smiling so big! I believe that I am on the Avastin and that this Christmas I very well could get the gift I have been dreaming of...a clean scan. This sends us hopefully on our way to that very thing. I have tried to be a good girl all year long! :)

Ah, I am just so happy.

Your prayers and faith. Thank you. I am thankful for you.

-The happiest girl in the world (cause I am getting more chemo!!!!!!!!)

Monday, December 6, 2010

Thanksgiving thoughts from Tara

Wow I can't believe that Thanksgiving has come and gone. Time really does fly...been six months since I walked out of the hospital in San Fran. Can you believe how much has happened in six months? In six months I have practically become a brain expert, gotten married, lost all my hair, moved three times, endured six rounds of chemo, barely lived through radiation, made a million new friends, been blessed by an apostle, and gained a new appreciation for life. Today I was thinking about life again...big surprise! :) How lucky am that I am young and strong and ready to fight this fight. Many older folks would just toss in the towel...right now it is not time for me to do that. Right now it is time for me to fight...fight for my life. I did not realize how stubborn I was until now. I am glad I am stubborn and not willing to give up. While going through cancer treatments you usually are faced with more than a dozen reasons or oppurtunities to give up...I faced one of those this last week...and guess who won!

This past week I have learned the horrid side effects of being constipated. I really don't want to go into detail but I will say that I now have gained more empathy for constipated people...see good things do come from bad things! Now I can fully say that I understand and that I am sorry!  It was a miserable week but I won. What have I learned from last week's trial...

1. Don't wait until you are sick to start taking meds. If the doctors tell you to take them...don't think you will be fine...take them!
2. Your mom is unfortunately...usually right
3. Green Smoothies are helpful
4. Josh is the most amazing man in the world
5. I will never make that mistake again.

Once again I have learned that the best way to learn is by making mistakes...:) Glad that mistake is over.

Sorry I have been gone for a while. It is no fun to write when you don't feel well...just know that I am all better now and we are seeing major happiness happening on top of my head!

Please pray for Chuck Buckhannon...his surgery is the 13th and he needs comfort. It is kinda interesting that the two people sick in my neighborhood are both sick with brain cancer. I really did not want a Temodar buddy but if it is to be is great to have Chuck as my companion! We were exchanging texts after he found out about the tumor and this is what he said and I completely agree.

"I am not nervous. God knows what He is doing."

Give yourself to the works better that way.

Forgive 70 times 7 please...I know I have been a bad writer but I will try to do better! Thanks for taking the time to read my blog and thanks for sharing this journey with me...only 8 months left!

Oh and my next scan is the 23rd of this month. On that day I see every doctor I have...well almost.

Shapiro - Neuro-oncologist
Brachman - Radiation oncologist
Infusion - nurses for avastin placebo (clinical trial)
Temodar - Brain Chemo starts again
Shiflet - homeopathic doctor
Scan - doctor man who does it and gives me that cool blue dye!

That should be enough doctors for that day and then CHRISTMAS EVE!!!

All I want for Christmas is a clean scan! Santa can't bring me what I want this year...only Christ.

Merry Christmas


Tara Bodrero