Thanksgiving 2010

This is Becky.

Sunday in church; all of the women in the room said in two words what they were thankful for - my words were "each day."  I have really learned to love each day and treasure our days.  Last week was a treasure.  We were lucky enough to have Rachel & Travis home from college; along with Scott's mother and his sister's family.  It was so wonderful to have a house full of people again!  We really enjoyed our Thanksgiving together.

Wednesday before Thanksgiving we had a big "doctor day" again and unfortunately, Tara started chemo again Wednesday (along with another dosage of the clinical trail chemo) and so she wasn't feeling too hot during our break with everyone here; but she participated in our activities when she could.  Somehow she made it shopping at midnight for Black Friday; but I think the surge of willpower to do that event sapped her for the rest of the week.  But, we are moving on; chemo is done for the month again and she should start to regain some of her energy.  I'm getting used to these monthly cycles - the good part is that the months are ticking by.  The more months that tick by; the closer we are to finishing this 14 month treatment.

I learned some more from Dr. Shapiro last week.  I haven't been too excited about Tara taking Dilantin for a year; but Dr. Shapiro explained why it is necessary; so I'm more resolved about it.  He said once your brain has a seizure; it is more likely to have a seizure again.  The brain finds the pathway for the first seizure; then that pathway is more easily followed the second time around, and so forth.  He also said that seizures can lead to paralysis; so I very quickly jumped on board of the pill taking at that point.  Previous to this moment, I was happy when Tara forgot to take her Dilantin and had a great day all day without tirednesss; but now, I am grateful for Dilantin and Tara is getting used to it.  She just really needs her sleep!!!  So, in a year from now we are looking forward to being medicine free in all ways.  But if not, some people take seizure medicine always and seem to function normally; so that's reasssuring.  So, on we go throughout this medicine cycle.  I have to remember to be grateful for the medicines - that they are killing those cancer cells in the brain.

Things I love and I'm grateful for this week:

The Lord
The opportunity to just LOOK at my college kids and have them around me.  I miss them so much!
Hugs and smiles from Brigham when he sees "grandma".
My married kids living close to our house so we can see them often
Relatives that came to our home
The chance to be around Tara and see her smile & feel of her great spirit
A body that works right
A great husband who provides so well for me
I'm glad Nate can play basketball and there is no permanent problem with his shoulder - he's just growing!
Prayer
Friends
Doctors and technology

That's enough..... I could go on and on; but I will spare you.  I am very grateful chemo is done for a few weeks.  I'm grateful Tara is here and we are all alive and well.

One last note - Tara's choir sang in church Sunday and it was a definite musical highlight (I think) for her - she'll have to talk about it; but the song sounded like REAL music and it was filled with the Spirit. (you who know me know that is a very high compliment - the REAL music part).  Her energy level was not high; but she made it through Sunday and the choir performance. She did a fabulous job conducting a fairly difficult song and we are so blessed to have such wonderful people in our ward who come to choir and support Tara.  She is easy to love!  Thanks to all of you who sang with us Sunday!!

Rex --- a new angel

 I am a blog stalker...there I said it. Lately I have been blog stalking a little boy named Rex. Rex is a little boy who was diagnosed with DIPG, t is a brain tumor as well. I have been following this little guy and recently...he became an angel. The doctors did not think that he would make it to the birth of his new baby sister but he made it longer than expected and the family was able to get a few pictures with him before he passed on to be with his Heavenly Father and sweet Sadie Huish who also suffered from a DIPG. If these pictures don't make you cry I don't know what will. Hus funeral is next week. Ah it is so sad to see these little guys suffer. I am glad he got to hold his sister.

 

He loved Toy Story and loved "To Infinity and Beyond" They have translated his special saying to "To eternity and Beyond" What a sweet angel

Who am I?

Lately I have been getting very tired because of my medicine. I often get frustrated and angry. Luckily I think I have found something that really helps with this problem. Though it may sound funny...I try breathing deep and talking to myself. It works so next time you get down or depressed or angry try to define who you are! This is my definition of me.

I have cancer, brain cancer. I have hope, high hope. I am surrounded by love. I have faith. I have an addiction to smiling. Laughing is a favorite pastime. I have peace, comfort, and knowledge. I have an amazing husband. I have friends. I have family. I have neighbors. I have a dog. I have new hairs finding their new home on my beautiful scalp and I have confidence. I have strength and I have will. I am filled with fire and courage. I am stubborn and I am smart. I have music and I have talents. I have the power to create and the power to withstand the devil. I have the Lord on my side. I have dedication. My fears are outweiged by faith. My faults are forgiven. I am a child of God, and a divine princess. Cancer fears me because of all that I have, and all that I am. 

It doesn't matter that I have made many mistakes and that there are many things that I am not...all that God cares about is what I am. Cancer fears what I am and I know what I am! :)

Come what may and love it...even if it is brain cancer. You don't have to love how sick it makes you or the hard times but rather what you have learned from it. I need to love what it is teaching me and how it is making me stronger. I need to love it because it is God's plan. I love God's plan, therefore, I love my trial some may call brain cancer because of what it has taught me.)

Can you see why this makes me feel better! :)

Try it.

Dr. Shapiro

I went to see the doc the other day and they finally discussed my seizure. He did take my scans to the tumor board and there was one doctor that was worried that the fluid was a sign of tumor regrowth. Dr. took him seriously and had many other doctors look at it. They all disagreed with the doctor who thought it was coing back, and so did Dr. Shapiro. I am passing all the movement tests that I should be passing and I seem to be doing fine. I am legally still allowed to drive because if I do have another seizure it will be another focal partial motor seizure, which is what I had. If this happens I can just pull off the road and call someone. My seizures do not cause me to go unconscious so I am allowed to drive. Apparently most people who have had brain surgery have seizures and he was surprised that it was my first one. I am just still not supposed to be left unattended. Easy to do. When we walked out of the room the doctor said some very encouraging words. "I'm not worried about her" I have never loved those words more. Him not worrying is a good thing. We have learned that doctors not giving you a ton of attention is a good thing. In the ER they told us that no news was good news. The longer we waited for results, the better. They always take care of the urgent things first. They read every scan real quick and if it doesn't look bad then they move on. If it is bad then they take care of it right away and then go back to the other scans. We waited five hours!!!! That's awesome news to us. If the doctor isn't worried than I am not worried. I am on the new meds which still make me feel drunk. He said that I will be on them at least a year and most likely indefinitely. He said that this medicine ruins fetuses so he told us again that we can  not get pregnant. Not planning on it now but what about later? He said that there are other things we can do if I ever want to get pregnant. Pretty much I am going to have a close relationship with these guys for the rest of my life. They will know everything about me while I know nothing but their name about them. Funny how that works. So life is good and I am just waiting for more blood tests today. This will be the third time this week. They have to check my Dilantin levels again.

So that's the word from the doctor. Yesterday at Yoga we talked about the power of the mind again. I really believe that our mind has power and that we can control some of that power. I will try to keep my mind positive and happy. I will use a positive power with my mind...I will be a superhero! :)

As to why this seizure happened - still no real answers.  It could be that the brain is just misfiring and the neurons still are reacting as if there is a tumor in there.  It happens with brain tumor patients and I will likely have to be on anti seizure meds for a very long time.  Dr. Shapiro is currently doing research on that very topic; but the brain is a complicated thing.

Fingers Working and Less Drunk

After reading my last post I feel quite embarrassed but cannot erase it because it definitely describes how I have felt the last few days. Today I am feeling better and am also able to type as you may notice. Now for the details. Here is my version of the ER story. Monday: 2:30PM on the phone with Uncle Todd-light headed and not feeling well. Dad overhears Todd asking me if I am okay and comes in the check on me. Dad stays with me through another dizzy spell then I tell him to leave because I have a lot to do. I am kinda pushy and really wanted to get things ready. Seriously 30 seconds later I call for my Dad because things are getting worse and I cannot see. Dad comes in and decides that we are going to go home early. Dad packs up in record time and my arm beings to go numb. I start to panic. We rush out of the office and my Dad tries to calm me. He is named Emotional Coach for the next rough hours. Tara and Dad get in car and begin to head home. Tara is feeling even more numb and gets more scared. Okay enough with the third person. Then out of no where, my hand hits me in the face. How rude, but seriously...my hand hit me in the face. My hand started convulsing and then my arm started flying. My Dad tried to hold it down and it kept hitting him. I refer to my hand during this period as an "it" because I had no control and do not want to recognize the fact that it was, my arm. My Dad called Terri and I texted her a few times with my burned right thumb. No answer. Then my face turns numb right before the 202, 101 intersection. I tell my Dad to head to the hospital and he happy heads in that direction. My arm is beginning to become very sore because I had been fighting my dad. My muscles were aching but I could not stop my hand from flying all over the place. When he did let my hand go it felt like there was a bat flying around in the car. My hand would smack the window and then hit me and then fly behind my head. We had to get my ring off because I was rubbing the other ringers raw with it edges. When I stop seizing I try to move my fingers and this is when I really start to freak out. Can you image the things that would run through your head if you could no longer move one of your arms? I was scared that it would never stop going crazy and that they would have to cut it off or tie it town because it would be a hazard...that was the extreme. I thought of all the years of piano I have practiced and all the future children I want to hold and how hard it would be without an arm. I now have more empathy for people missing a limb. Terri finally called us back and told us to head right to the ER. My dad picked up the pace and we soon made it to the ER. They quickly checked me in and stuck a nice IV in my arm. The bruise is amazing. I have never had an IV bruise like this and I find it sad that I have other IV experiences to compare it to! :) They could not use my port because the ER is too dirty I guess. After they stuck me with the IV they had to take blood from the same arm, practically in the same spot! They really need to learn to combine needle pokings! My arm continued to go crazy for about 10 minute sessions for about 3 hours. My mom came in after everyone else and saw it and about freaked out. She had no idea why we were there and she was so confused. She started saying that we need to tell the nurse and she started to go find a nurse when my dad reminded her that the nurse had seen it and that it had been happening for an hour and a half. I tried to control my arm so she would not see but I could not help it and she saw the crazy arm. It was the weirdest thing in the CT scan. I had to hold my arm down and it literally kept running away from me. I cannot reenact what happened but it is deeply en-grained in my memory. So I had the scan and then we waited 5 hours for a doctor. 5! They finally put me on an anti-seizure Dilantin. at first they had it set to run at 100 drops per hour or something like that and then I got really itchy so she said she was going to cut it in half. She left and I continued to itch. Josh looked at the monitor and it said 300. When she came back he said, " I'm no doctor but you said you were going to cut it in half and it is at 300 right now and half of 100 is 50." She quickly changed it back...scared out of her mind. I am glad that he caught it and said something. The medicine has been a complete pain. I feel like I am dunk and having a hangover and the same time apparently. I have no idea why people would want to get drunk...it was miserable and lasted for three days! I was dizzy and stomach sick and did not know what was going on! I hated it. I am much better now. So today I can move my left arm fine and we will not know more until next week. There are a number of things it could be. We got home at around 3 after our ER experience. It was my first time and I prefer to never go again...dreaded place. Happy November! I am so thankful for my beautiful under-appreciated left arm.

Night night for me. Study Study for Josh. He has a big test tomorrow...

Tara B.

update

This is Becky.  Tara really cannot type yet; I am hopeful she will regain full use of her left arm soon!  She is very tired today; both from the meds and the actual seizures.  She had seizures yesterday on and off for 3 hours.  Her left arm would spasm out and wildly flail around.  Her left side of her face also was numb.  Anyway, we never met with Shapiro today - he reviewed Tara's case without seeing her and will see her next week; so we still have no real answers as to why this happened.  It could be one of several things:  scar tissue (but why now after 5 months?), fluid (likely the case), blood in the brain, or other causes.  We just don't know and hopefully Dr. Shapiro can figure it out from the CT scan.  They did say last night there may be a spot on the scan; possibly a blood spot or something.

Tara is supposed to rest and she could possibly feel more adjusted to the Dilantin by Thursday (anti-seizure med).  She has ordered me to Houston for the quilt festival I planned months ago.  She will have someone with her at all times this week; and has assured me there is not much I can do since we can't see doctors until next week; so off I go.  It will be tough not to think of Tara every minute; but I will try.  I leave in the morning....

Tara remained positive throughout the evening - her comment when we waited for hours to hear from a neurologist was the following:  "It must be good news because they are attending others worse off than me.  If it was bad for me, then the doctors would be here."  She still managed to smile and laugh at herself while her arm flailed around wildly.  I was bothered by her arm flailing around; but Tara just dealt with in her usual manner; laughing at herself.  Josh is very sweet to her and helps her smile.  We watched more TV last night than we had watched in 6 months (we don't have cable.......) and I got way too much quilting done waiting for those neurologists who never came.  All we ever talked to was a resident.... but such is life.  I still believe she is in good hands...  She hasn't had any more seizures and seems to be stabilizing; so that's good.

Thanks all for your love and concern!

Why would you ever get drunk?

I cannot reallt type sp I will have my mom do it later for me. They day that the medivinr makes you drunk and I super hate it a lot. I am super dizzy ansd can't reallu think straight. There good enoufH. we will write later. This stinks but at least my hand is not titting me in the head anmore...bad hand.@ Goosd night

ER room

We hit a bump in the road yesterday.  Tara has been feeling remarkably well this round of Temodar.  She looks healthy; hasn't been as sick as last month; and we have been so encouraged!  It must be all the prayers you have been sending our way; so this "bump" was a shock.

Today if you could pray that Dr. Shapiro will be able to know how to help Tara that would be helpful.  Tara had seizures yesterday on her left arm and her left side of the face.  We went to the ER and she had some IV medication for seizures; but we have no answers yet as to "why" the seizures.  It is definitely brain tumor related because it's the same area that was affected before the tumor was removed.  We got home last night (morning) at 2:30 am and Tara is sleeping peacefully now and we will see Dr. Shapiro this afternoon.

Tara will write more when she can; this is just a quick update.  Thanks for all your love and prayers!

Becky