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UCLA Responds

February 19, 2009 By 4 Comments

We finally heard back from Dr. Liau last night.  She said that the brain tumor board (that always seems weird to say) reviewed my scan yesterday, and although they agree there has been some growth of the tumor, it’s nothing major.  They agree with our decision to proceed with chemotherapy and get another scan in a couple of months.  If the scan is stable at that time, then they recommend just staying on Temodar.  If it is growing, then they recommend radiation.  This is GREAT news!!  All we were looking for was confirmation of our decision to do chemo.  They recommended doing radiation ASAP last May, rather than chemo.  So thank you to all of you who prayed about yesterday for us.  They were answered.  We are blessed.

I have to say that if you or anybody you know needs a neurosurgeon, I can’t recommend Dr. Linda Liau enough.  She is one of the most amazing people I have ever come across.  No doctor that I know of will let you email them directly, nor will they respond promptly or at all, if you do.  All of my doctors are amazed that she will converse with me in this manner.  She sent this email at midnight last night.  She is so full of compassion for her patients, and is one of the most knowledgeable in the field of brain tumors.  After my last surgery, she came and sat down with me on my bed in the hospital to let me know her thoughts on everything and to see if I had any questions or concerns.  I have a whole plethora of doctors in my life, but not one of them would ever display this much concern and compassion.  She so genuinely concerned and such a comfort for me as I walk this journey.  I’m so blessed, and feel like I couldn’t be in better hands. 

So at this point, I will continue on chemotherapy, along with adjunctive therapy to keep my immune system boosted and give us multiple angles of attack on this pesky thing.  I will get a follow-up scan somewhere around the first of May, and we’ll just go from there. 

That’s our story and we’re stickin’ to it!

Filed Under: Linda Liau, Scans Tagged With: ,

Some thoughts….in poetic form

February 17, 2009 By 3 Comments

Alone in my house, here I sit with my thoughts

It’s hard not to ponder the what if’s and what not’s

I struggle not to journey down the path of my fears

My thoughts on this path are usually trailed by tears

Will my kids have a mother, will my husband have a wife?

How long will God bless me on this earth with my life?

 

I know that I serve a great God that can heal

But is my faith really that big?  Will it someday be real?

I hope that my words aren’t too dark and depressing

Just keep reading on to see what I’m really addressing

 

When I lay down these burdens that I tend to convoy

It’s amazing how quickly my sorrow turns to joy

It’s only by God’s grace and his mercy I’m here

He wants me on my knees, he wants me to draw near

He’s working in my life in ways that I can’t imagine,

It’s all a grander scheme that  none  of us can fathom

 

So when life has you in a place where all you feel is despair

Please know that there is a God who is bigger out there

He is bigger than your burden, your hurts and your trial

He knows everything about you, even before you could smile

He wants to be with you, to hold your hand down this road

He wants to help you, lift the burdens you load

He’ll be your comfort, your joy and your peace

When you let him, it’s amazing, that sense of release

 

I don’t know what I’d do without God in my life

He has been my stronghold in the midst of this strife

But my faith is being tested, and will it stand firm

I truly hope so, but that is something I’ll learn

 

So whatever journey you find yourself on

I hope this can help you, the words in my song

Please remember that God wants to walk by your side

Cast your burdens on him, it can be quite a ride

Filed Under: Just life Tagged With:

Chemo is in the house

February 11, 2009 By 3 Comments

Chemotherapy has officially begun.  So far it just feels like a fairly bad case of the flu.  I really can’t complain, considering it is chemotherapy, and it’s only for 5 days at a time.  I didn’t sleep very well Monday night, which was the first night I started, so I wasn’t feeling well much of the day yesterday.  Thankfully, my niece was able to take the kids for the day so that I could get some rest.  From the experiences that I have read online from other people, most of them say that the first 2 days are the worst, and then your body adapts….I guess.

After a week of processing the fact that this tumor is growing, I’m very at peace with our decision of how to move forward.  We are going to attack this thing from several different angles.  One of the things that becomes a challenge in treating cancer is that at some point, a lot of cancers will become chemo-resistant.  Even though cancer cells are a more fragile cell than normal cells, they are very smart.  They figure out ways to “hide” from therapies that are trying to attack them.  This is often why a patient will experience stability or shrinkage of their tumor, but then all of a sudden the cancer starts growing, again, even while on chemotherapy.  There is an inspirational story that you can read here, about a man that had the most aggressive brain tumor one can have (Glioblastoma), with a life expectancy of 6 months to 1 year.  This was in 1995, and the man is still alive today.  He ended up incorporating his own cocktail to treat his cancer.  He, much like I, was very involved in the decision making process of what his treatment regimen would entail.  The difference between what he did and what I’ll be doing, is that he incorporated a lot of different drugs that were being used to treat GBMs.  Since I don’t have a Glioblastoma, but a lower grade tumor, I wouldn’t qualify for most of those things, and I have chosen to try some “softer” therapies.  These  therapies have been shown to compliment Temodar, as well as offset the immuno-suppressant side-effects of the drug.  Boosting your immune system is very important for a cancer patient.  It’s ultimately your immune system that will win the battle against your cancer for you.  Because cancer treatments are extremely immuno-suppressive, I will do whatever I can to boost my immune system back up, through mostly natural therapies.

Filed Under: Just life Tagged With: ,

Scan Results

February 6, 2009 By 6 Comments

We received the finalized MRI results and the tumor has shown some mild growth.  Devestated?  No.  Disappointed?  Yes.  We haven’t been nearly as aggressive in the DMSO therapy since my last scan and in fact hardly did it in late November and December because of the holidays.  It probably wasn’t the best decision, but it’s hard to want to smell like DMSO when you know you’re going to be around a lot of people celebrating the season.  Who knows if that contributed to the tumor not remaining stable, but it is what it is, and we’re onto the next step!

 It is still presenting as a low grade tumor, which is some of the best news we could’ve received.  This tumor, as you’ve seen, is supposed to be a higher grade (3), rather than 2.  We have been so blessed that it has remained this way since beginning this treatment in June.

What’s the next step?  We have decided to start chemo on Monday.  The chemo is an oral pill and I will do it 5 days in a row, followed by 23 days off.  I will continue to do some natural therapies that will compliment the chemo, but also help off-set the side effects.  The most common side effects with this medication is headache, nausea, fatigue and constipation.  The latter, I’ve noticed, is the biggest complaint from people online.

We thoroughly remain confident that we can beat this tumor.  We believe that God will bring healing, but he apparently isn’t finished with this chapter in our lives, yet.

I’m waiting to hear from my neurosurgeon, Dr. Linda Liau.  UCLA hasn’t always concurred with my local radiologist on the reading of the scans, so I never consider the results truly official until I hear from her.  I’m hoping to hear from her sometime next week. 

We are doing well, otherwise.  We’ve had 2 very sick kids in the house, getting anything and everything that seems to be going around the school and the church nursery.  a.k.a. Ground Zero.  Just when we thought we were turning the corner with these colds, Tyler now has an ear infection.  Poor guys.  I’m happy to say that I haven’t gotten anything, yet, (aside from this tumor), so my immune system must be working well! 

Thank you so much for all of your love, prayers, emails, notes of support over the last few weeks.  I’ve said it before and Ill say it again.  It takes a village to get through a cancer diagnosis and all of the things that come with it.  I would never survive the agony without God’s grace and all of you investing in our lives in the ways that you have. 

I will post, again, when I hear more information.  I have not received the PET scan results, but based upon the MRI, I would think that the PET should correlate with the MRI results.  Until then…

Filed Under: Linda Liau, Scans Tagged With: , ,