The Story

I got this CD set, The Story, and watching the live stream of the tour. Wow!  A few of the songs' lyrics that really speak my heart:

The song of Moses, It Must Be You: 

"If there’s anything good
Anything that’s good in me
Well, it must be You
Must be You
And if there’s any part of my shaking heart
To see this journey through
It must be You
It must be You
Must be You
It must be You"

David, Your Heart:

"At the end of the day, I wanna hear people say
That my heart looks like Your heart, my heart looks like Your heart
Unashamed I will dance, In Your name, lift my hands
‘Til my heart looks like Your heart, my heart looks like Your heart"

And Job, Broken Praise:

"If this is where my story ends, 

just give me one more breath to say
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah"

Contend for me

LORD, you have seen this; do not be silent. Do not be far from me, Lord. Awake, and rise to my defense! Contend for me, my God and Lord.  Psalm 35:22-23

Diary of a clinical trial

Well, I began the clinical trial September 1. I stopped it on October 31. I went into this thinking I could do 12 months. It might get hard, but I could do it. None of the information I was given could have ever prepared me for the side effects I experienced. They pretty much sounded similar to what I had while on Erbitux for 3 years. Any others were manageable. After week one I started losing my hair by MANY strands at a time. That was unexpected so soon. Wasn't even listed as a top side effect. The other side effects were manageable, thankfully. By the end of September assorted rashes started. Rashes are a common side effect. I managed to get through the month okay. 

As I got into October good, rashes of all sorts came up.  Dry, VERY itchy, some painful, some with welps, some burn-like, some just a rash. I find out the research nurse is out on medical leave till mid November & my home onc wants to defer to B'ham so as not to compromise the study. I put up with this for various issues until the itching from the rashes became so overwhelming physically and mentally. I was on the verge of depression. I took the last pill on Monday, October 31. When I got up on Tuesday, November 1, I knew I could never take that drug again. Though I was greatly discouraged at this point God amazingly spoke to me over and over to not be discouraged but hold onto hope.

I texted my husband and told him why I was stopping. I told him there was no one to talk to about it. He asked for the contacts and phone numbers. By the time he got through with both places, things were hopping. My local dr. called and left a message for the research nurse. (The alternate had failed to return my husband's message.) The research nurse was on the phone to my husband within minutes and an email to me as well. To her credit she was checking my email updates at her home and assumed the alternate or my local dr. was helping. She told us to have my doctor do whatever I needed. Well, he already had. He thought I needed to be on an antibiotic rather than a steroid.

By Friday the rashes and the itching had subsided. However, I woke up with a very painful, burn-like rash on my inner thighs. There was no way I could wear pants. I used the aloe gel with Lidocaine that I used when on Erbitux plus Aquaphor around the area that was extremely dry. Finally, by Tuesday I could tell it was beginning to dry up and heal and wasn't as painful. Still not able to wear pants, though. I emailed a friend that has a vast wardrobe of skirts and asked her if I could borrow one to try to go to work on Wednesday. After she got off work, she brought me 10 skirts! Said it didn't even put a dent in her closet, lol. So with her help I was able to go to work on Wednesday and know I could work comfortably...and I did.

I had an already scheduled appointment on Thursday morning with my local oncologist. He and his assistant were shocked at the severity of my rash. I told them it was already a week old. He is keeping me on the antibiotic longer and prescribed a round of steroids. I will be going to B'ham on Tuesday, the 15th, for a check-up. He said they might suggest lowering the dose of the medication. I told him I didn't care what dose it might be, I wasn't taking it. Told him some lung cancer patients who have been on it see their tumors shrink. They endure the harsh side effects because of that hope they are given. I told him I didn't have that to look at. I have no idea if this medicine is helping me or not. He understood. He doesn't want to return to the Erbitux. He says there are still things he can do. It would be actual chemo, though. He wants me to discuss it with my B'ham doctor next Tuesday. Then I will see him after Thanksgiving to make a decision. For now that's how it stands. He said my hair should stop coming out when this drug is out of my system. My skin continues to be extremely dry and sensitive and peeling in the areas of the rashes. It will just take a little time to get over the side effects fully.

Reminder to self

What Cancer Cannot Take From You

It cannot take away your Faith,

shatter your Hope,

or lessen your Love.

It cannot destroy true Friendship,

invade the Soul,

or take away Eternal Life.

It cannot conquer the Spirit.

                                                         Given to me by Jacob, 12-25-04

SHE-RO

That's the name my high school prayer partners have given my daughter. That is a very applicable name for her. She has been a trooper this year in fighting breast cancer. She spent 8 months doing chemo. She then had breast surgery on Thursday. She is doing amazingly well after surgery. Her spirit of hope and victory is contagious to all who she touches/reaches. I spent several days with her and her family to help however I could during this time. She was doing so well that I got to come home today. I was listening to my iPod music coming home and this song came on. It took on a whole new meaning to me to hear Matthew West singing the words, "We are survivors!" Who would have ever dreamed we would both one day consider ourselves breast cancer survivors! But we are! We are!

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…” Ephesians 3:20 (NIV)

A new direction--breakthrough?

When I saw the PA after my last surgery (July 1), she told me about a clinical trial the Head and Neck Division at UAB is doing with  a medicine not ever used for head and neck cancer patients. It is for patients who have had recurring tumors and radiation is no longer an option. It is a pill, Tarceva, taken once a day for a year. I told her I'd like to talk it over with my local oncologist. I told her I was already on Erbitux, and she said he might not want me to change. The next Monday the research nurse called to ask me if I would be interested in being a part of the clinical trial. I told her I'd be seeing my oncologist in 2 weeks, and I'd like to talk it over with him. She said she would send me the information about it so I could look over it and share it with him.

I fully expected I'd be getting my Erbitux treatment when I saw him 2 weeks later. I gave the information to his assistant so he could look over it before seeing me. He was very much in favor of me doing the clinical trial. He has four lung cancer patients who have been using the drug long term. He knows all the doctors at UAB involved in the study. This clinical trial is Phase II of the study. He said that meant they had to have had positive findings in Phase I of the study to move on to Phase II. He encouraged me to participate. He said I could be on the breaking edge of something new. He said he would be glad to assist in whatever way he could.

I sent the papers and a note to the research nurse and she called me when she got them. She said I would have to come for an initial appointment to get set up and sign the papers with her. She said that since it was UAB's study, only they could monitor me. So she set me up for an appointment to see Dr. M again. We went to Birmingham on Tuesday, August 23. She said she had contacted my local oncologist, and he had sent a note agreeing for me to take this course of treatment.

I had the initial blood work and the chest x-ray, but they had to wait for one other report. When the dr. was examining my mouth he saw a small ulcer on the area that is now a part of my tongue. It was actually where my top molars were resting. I had not even noticed it. I was more concerned about what felt like a lump on the left side of my neck. So I was not expecting to hear that he wanted to do a biopsy on something in my mouth. I then told him about the lump on my neck. After examining me he told me it was not a lump or a lymph node but part of my neck's anatomy. The look on my face must have said, "You're going to have to do better than that." So he went and got a model of the neck to show me what I/he was feeling. He even had me feel the same area on his neck. I was then okay with what he was telling me...though the 'lump' has only gone down to feeling normal to me in the last day or two. Anyway, the nurse contacted me last Monday to let me know the biopsy was negative for cancer! Also, the blood work and chest x-ray were fine. So she would have the Tarceva pills in the mail to me.
I started the Tarceva on Thursday, September 1. On Sunday I had fatigue and was achy like when I had Erbitux treatments. The same kind of rash started on my face over the weekend, too. I am also using Nystatin for thrush in my mouth. I'm really thinking that is a reaction to the Tarceva though it is not a common side effect. So, hopefully, just things I've dealt with before.

I didn't know when I'd finish another post, but this devotional today about a breakthrough seemed most timely. I couldn't find a direct link to the devotional without posting the whole thing here and it's kinda long.

It used Isaiah 64:1 - "Oh, that You would rend the heavens! That You would come down! That the mountains might shake at Your Presence…"  It included this part in a prayer from Carolyn Baker: Why is it, My Father, that so many people are presently sitting on the edge of a great victory – a great breakthrough - and don’t even know it? I suppose part of it is because You rarely do what we expect You to do – so we are not looking for it! Your victory often looks unlike what we thought it would. We are, as humans, skeptical all too often. This gives us a worldly mind set – not a heavenly mind-set. Therein lies our confusions. You are first in my life - and because of that, You have often rewarded me with a greater wisdom and understanding. All along my path You have shared your insights with me – continually reminding me that breakthrough was at hand.

Whether I 'deserve' it or not, He keeps reminding me :)

We can do it!

I'm Gonna Love You Through It - Martina McBride

Listen and trust

I've been following a CaringBridge.org blog for almost a year. It is about a young man that our family knows from homeschooling and church for most of his life. He no longer lives in our town but in North Carolina with his wife, Liz, and their two children, Sawyer and Bennett. His wife is the blogger. Here is her introduction to her blog and a link:

Brian Sanders: Brian is a devoted husband and loving father who became critically ill on September 18, 2010. He spent 52 days in ICU and 3 weeks in a rehab hospital in Charlotte before returning home, where he faces a long road to recovery. He is learning to cope with the loss of his vision, and continues to work to regain his memory.  http://www.caringbridge.org/visit/briansanders

It is heart wrenching at times to read about the hurdles they are trying to get across. However, Liz makes it clear where her strength and determination are based. She is an inspiration to me and, I'm sure, to all who follow this journey along with them.

Her post for August 13th was especially profound for me. Simple, yet so full of truth that I need to remember to apply to my own situations. I asked permission if I could share it with you, and she has graciously given her permission. I hope it blesses you as much as it has me.  Please take time to follow the link to her blog posts over this past year, and pray for them as you feel led. Thank you.

Bennett turned one today. Our little guy certainly started his life under turbulent circumstances, but he is the poster-boy for the resiliency of young children. He is the picture of health and happiness. His smile lights up the room, his giggles melt away the stress of even the hardest days, and his slobbery kisses are pure sugar. Happy birthday, baby boy. Mommy and daddy love you up to the moon and back.

Brian sat next to Bennett’s highchair as Bennett enjoyed his very first taste of cake. He had a chocolate birthday cake with peanut butter frosting, and his sister was kind enough to “help” him eat it. Brian reached over to Bennett and smeared frosting on his face, so Sawyer and I dabbed a little frosting on Brian’s nose. Shortly thereafter, there sat both of my boys: side by side, faces kissed with frosting, grinning from ear to ear.

To start the day, Sawyer and I enjoyed a Saturday morning ritual: mommy/daughter breakfast at Chick-Fil-A. This tradition began over a year ago, when she was waking up at 5:30 or 6 each morning. I started taking her out to give Brian a chance to sleep later on Saturdays. Although we have clocked hundreds of hours at Chick-Fil-A over the years, today was a first: Sawyer got stuck at the top of the play place. There are different levels to climb on and tunnels to crawl through, many of which lead back to the entrance to an enclosed spiral slide. Once she climbed to the very top, she looked around and couldn’t figure out where to go next. Even when she sat on the edge of the platform, she couldn’t touch the next step with her toes. I tried to coax her down several times, but to no avail. It didn’t matter if the next step was only a few inches from her feet. She couldn’t see it, so she wasn’t jumping. It was a very long 10 minutes. Finally, she let out a big sigh and teared up. “Mommy, I’m afraid.”

I tried so hard to help her understand, but the more she fought my instructions the more anxious she became. I was asking her to drop down to a step she couldn’t see. Talk about a leap of faith! I took a deep breath, made eye contact with her, and simply said:

~Listen to my voice.~I know you’re scared, but I am here to help you.
~I can see where you are going, and where you will land.
~You just have to trust me.

Not long after that, I heard a very determined little voice say, “ok, mommy, I will”. And she did. She pushed off from the net, she slid down on her belly, and she dropped a few inches to the step below her. Success! She crawled through the tunnel, slid down the slide, and emerged from the tunnel slide ready to go again! (No ma’am! .... mommy needs a minute to recover before you can try that again...)

As I stood in the play area, it occurred to me that I am stuck, too. Maybe not at the top of the Chick-Fil-A play place, but certainly stuck in a place where I am scared. Stuck in a situation I can’t get out of. Stuck in a situation where I can’t see the next step, let alone the next 50 steps. And the harder I struggle to fix it on my own, the more frightened and alone I become. If I am quiet, and if I seek the Lord with all my heart, I will hear:

~Listen to my voice.
~I know you’re scared, but I am here to help you.
~I can see where you are going, and where you will land.
~You just have to trust me.

Trusting that He knows what is ahead is a difficult choice, but in this case it is the only thing that will work. I can’t do this on my own. I can’t figure my way out, I can’t search for an alternative exit, and I can’t have someone else do it for me. I just need to seek the Lord. Listen to His words. Trust that they are true. And be obedient.

“Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways, acknowledge Him, and He will direct your paths.” Proverbs 3:5-6

2 Corinthians 4:17

Here is an excerpt from the April 2011 issue of Homelife. God had especially brought 2 Corinthians 4:17 to my attention a few days ago. Then I found this magazine today. I was reading it while waiting to be pre-admitted for my surgery in March (not knowing that that surgery would begin a chain of events for the next 4 months). I  remembered I saved it for a reason. This is why:

     Since that fateful day in 2006, I've witnessed all of the good that has come of tragedy, and I'm beginning to recognize why it was necessary. The flashing sign INCLEMENT WEATHER. NO UNNECESSARY TRAVEL was not a word of admonition; it was a word of instruction. God was teaching me His wisdom for living the Christian life. I cracked the code: Trials are necessary to accomplish God's higher purposes. This is for my good and His glory.
     Although these days the world appears to be out of control and seems utterly chaotic, know that there is a God with a perfect order to things, a God who does everything out of love to produce something better in us. The pain we experience is the principle consequence of living in a fallen and flawed world. But God's redemptive promise is that, one day, He will remove evil and suffering from this world, after accomplishing a greater, eternal good.
     The Bible tells us in Matthew 5:45 that God causes His sunlight to rise on the evil and the good, and sends rain on the righteous and the unrighteous. Regardless of the climate today or the forecast tomorrow. keep the faith. Muster the strength to pray:
     Dear God, whether or not You choose to change my circumstances, I will trust in You still. And Lord, whether or not You call on me to suffer a little longer, I will worship You even still, for You embodied 'suffering well' for my sake. Either way, Lord, I know that You are in control. Not my will, but Yours be done. In Jesus' name, Amen.
     Perhaps you're currently facing the buffeting tempests of a job loss, a financial crisis, a startling medical diagnosis, or personal tragedy. As believers, we don't have to linger in the dark storms of life, waiting for the ominous shadows to pass. We walk in the assurance of God's redemptive plan because we're covered by the ultimate umbrella of protection: Jesus Christ. Second Corinthians 4:17 reminds us, "For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory."
     Whether you're grieving a natural disaster, mourning our disordered universe, or weeping over misfortunes of your own making, don't allow your current trial to blot out the light. Look toward the Son, and you will find refuge in Christ alone during life's fiercest storms.
Weathering the Storms of Life - Casey Ewen Avenriep (Read her full personal story here.)

Still My God

Courage

Please read the latest post written by my daughter on her blog: Finishing

God never ceases to amaze me at the ways He lets us know He's there.