Shining the Light

I sit here tonight completely exhausted, both emotionally & physically.  The last week has been a whirlwind.  My sweet mama went to be with Jesus on Tuesday morning.  I was given the great honor and privilege to stand with her at the gates of Heaven.  Maybe one day I will recount all of the goings-on of that morning (and the days leading up to Tuesday), but for now, I want you all to know that she left this world the way she lived - she was worshiping her Savior.  She was barely responsive & had so very little strength left in her body.  I noticed that she kept moving her hands (which wasn't unusual when she would try to clear the secretions from the tumors in her throat).  At some point, it occurred to me that the song playing on her iPod at that moment had said something about "lifting my hands."  So when she tried to move her hand toward her face again, I held her arm up, just as she would have done in worship.  The next few minutes were so raw & tender - but I KNOW my mama was standing at His feet.  There is no doubt in my mind that He took that feeble, weakened hand and brought her right to His side, whole and healed.  I know she was singing out at the top of her lungs - something she hadn't been able to do well since her journey began, and not at all for the last couple of years.  My dad asked me to help him write her obituary, and I just kept thinking, "How do I sum up the rich life she had in one simple paragraph?"  The Lord reminded me that the most important thing to my mama was that the Light of Jesus shine, and that everyone know the hope that is the Gospel.  This morning we had the celebration of her new eternal life - some people say funeral, but I'm telling you right now, that was no funeral.  That entire service was pure worship.  I wouldn't have expected any less, though, because that is exactly the way she wanted it.  She & dad planned out the service together - well, I guess I should say, she told dad what she wanted & he agreed :)  There were two songs that she chose to have two special men sing, both by Chris Tomlin - one was "Amazing Grace - My Chains Are Gone" and the second was "I Will Rise."  I'm not going to try to find a link to them right now, but if you haven't heard them, go find them on YouTube - and be prepared to feel His presence!

I will end for now by posting her obituary (I will omit the parts with our names).  The love and prayers are felt.  There are no words that could express our gratitude for the way that you have all held us up through this journey.

(I also wanted to let you know that I have made my blog private for a while; but when I start writing again, I will open it back up.)

Cathy was born in Panama City, Florida in 1952, 2 months premature.  From the start of her life, it was evident that God’s hand was upon her.  She married her sweetheart John, in 1971 and they were blessed with three children.  After raising her children, Cathy served as the Music Secretary at Mt. Gilead Baptist Church.  She loved her work and served faithfully for 6 years until January, when her cancer forced her to resign.  The only thing more important than her family was her relationship with Jesus.  Throughout her life, she impressed on everyone who knew her an exceptional representation of God’s grace and love.  Throughout her struggle with cancer, she allowed God to use her life to bring glory and honor to Him.  What she desired more than anything was for her Lifesong to sing for Him.  In lieu of flowers, the family requests memorials to be made to Mt. Gilead Baptist Church (Walk Through Bethlehem) or Covenant Hospice of Dothan.

Full Circle

Here is a quick update:  I had to quit work earlier than I thought. We've established a wonderful relationship with a local Hospice organization. Their goal has been to keep me comfortable and make sure I have everything I need. One of those being a pain patch which has helped to get my pain level under control. I received a PEG (feeding tube) two weeks ago as it had become impossible to swallow anything by mouth. It has been a bit overwhelming at times but at least I can get nutrition I need. I find myself sleepy or needing naps more frequently, but at least my pain is under control!

It has been hard for family and friends, too. I can see God's hand working this out for many of them. I've tried to share with them that sadness is okay. Jesus had sad moments. I learned a long time ago that God is okay with my human emotions...as long as I take them to Him. What He doesn't want me to do is wallow in hopelessness, becoming forlorn.  Forlorn: a. Appearing sad or lonely because deserted or abandoned. b. Forsaken or deprived: forlorn of all hope. TheFreeDictionary.com

That definition in itself takes God completely out of the equation. This emotion in no way brings glory to God as the focus is on self and circumstances that self does not want to tackle. All self effort to pull oneself out of this emotion brings no glory to God. That completely takes one's focus off of Him and His sovereignty. It takes one's trust off of Him. The only way God is going to get glory is to accept that He is sovereign. He can do whatever He wants to do, whenever He wants to. The ultimate goal is always going to be to bring Him glory. There's no use to get bent out of shape about the circumstances I have before me. God designed them. He will be there with me all the way through them. Whatever His choosing, the outcome will be for my good and for His glory.

My very first blog post on May 9, 2007 contained an article by Max Lucado, Peace for Anxious Days. I received this in another email a few weeks ago. Please take time to go back and read it. The message is still very much applicable (almost) 5 years later. You might say God has brought me full circle. I've been told by 2 different doctors that the life expectancy after a diagnosis of this sort would be 2-3 years and 5 years. It has been nearly 8 years. God gave me fabulous doctors that did everything in their power to fight this cancer. I think that rates up there with miraculous.

When I reflect on God's sovereignty in my life, it has to begin with my birth:
*I was born 3 months premature in 1952. I stayed 6 weeks in the hospital before being released to go home with my parents.
*He orchestrated how I would come to know Him through His son, Jesus Christ.
*He gave me the best husband I could ever have.
*He blessed me with 3 wonderful children to raise in understanding the importance of their own personal relationship with Him.
*He moved me to Dothan in order for my relationship in Him to grow to what it is presently.
*He placed me where I had access to some of the best doctors anywhere.
*He has given me peace that passes all understanding in many circumstances. Philippians 4:7

And I'll end this post with a quote by John Piper:
 "Though I walk in the midst of trouble, you preserve my life" (Ps 138:7). When this mercy is full, there'll be one for dying.  

And the words from Broken Praise:
 "If this is where my story ends, 

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

Amen and amen!

I'm running to Your arms

I was watching Passion 2012 livestream today. Kristian Stanfill sang this song, Forever Reign.  I had been wondering how I would title this post. His song gave me the title. And this one by him, Always.

I did see my Birmingham doctor for a follow-up after stopping the clinical trial. I also told him I had been having pain at the surgery site with referred pain to my ear and jaw. He said it could be from scar tissue but could also be a recurrence. He scheduled a CT scan and a biopsy for December 7 with the follow-up visit on December 13.

We didn’t get good news—at all. There is a large tumor at the base of my tongue in the same area as before. There is also a suspicious spot on my voice box just below that. The type of surgery to remove these places is extremely radical. We had a choice of choosing such a radical surgery that would be life altering in itself or choosing quality of life. We chose quality of life. He said there was the possibility of chemo that might shrink the tumors or finding pain management to deal with what I have. Dr. M referred to this cancer as islands. He said he and Dr. H have been removing islands, only for another island to pop up somewhere else. 

This was my Max Lucado devotional just a few days before this appointment: 

“When you pass through the waters, I will be with you; and through the rivers, they will not overflow you.”  Isaiah 43:2-3 NASB
 
"God knows what is best.  No struggle will come your way apart from his purpose, presence, and permission.  What encouragement this brings!  You are never the victim of nature or the prey of fate.  Chance is eliminated.  You are more than a weather vane whipped about by the winds of fortune.  Would God truly abandon you to the whims of drug-crazed thieves, greedy corporate raiders, or evil leaders?  Perish the thought!

We live beneath the protective palm of a sovereign King who superintends every circumstance of our lives and delights in doing us good.

Nothing comes your way that has not first passed through the filter of his love."

 I was not totally surprised by anything the doctor told us. I had to ask myself and to God: “How do you want me to die?” As my daughter's pastor who has battled pancreatic cancer in the last 3 years said in one of his messages, “Cancer will never have the last word in my life. God will.” I believe that. I might die from an incurable cancer, but it will only be if and when God says so.

Today we met with my oncologist.  He agreed that he probably would not choose the surgery either if it was him.  The options of chemo: The first one he would choose would be hard on a healthy person.  The second one wouldn’t be as hard but would still affect my quality of life.  I chose no chemo.  He said he could begin with pain management.  I had hoped for a patch, but he said it wouldn’t work for me since I’m so thin.  So he started me on another couple of prescriptions to try.  He suggested we go ahead and establish a relationship with hospice.  He wasn’t trying to imply anything by doing that but just knew they can already be helpful to my needs even at an early point.  So the hospice organization we chose will be contacting us.  I was so glad to know God had gone before us, everything went smoothly, and it was going to be okay.  We as a family still have a lot to process, but God has clearly shown He will not leave us to flounder by ourselves. He will be with us every step of the way.

Tammy Trent's Twitter post tonight:  "God has mapped out the path B4 U. He is fully aware of every detail & is committed 2 walk beside U as a guide & comforter so UR never alone"

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