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

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.

Good report

I am so glad to be able to share that we got a good report today. My surgeon had told us that he would be on vacation this week, and I would see his physician's assistant. She was able to tell us that the biopsies from surgery last week all came back with clean margins. No cancer found! We were so relieved and so thankful. I've learned to not put God in a box. I wanted to believe we'd get the good news. I also know that we didn't hear what we expected after my last two surgeries. I know God can do whatever He wants to do, and He will always be faithful through the circumstances. We are so thankful He chose to give us good news today! Since the report was good I was released from this surgeon. I'll soon make an appointment to see my primary surgeon in Birmingham in the next few months. Though I will still be making trips to Birmingham, it is "back to normal". Normal in this context is a good thing :)

Edited to add: It's Scary to Be Us - Beth Moore

Step by Step

Oh, God, You are my God, and I will ever praise You,
Oh, God, You are my God, and I will ever praise You.
I will seek You in the morning, and I will learn to walk in Your ways,
And step by step You'll lead me, and I will follow You all of my days.
"Sometimes by Step" by Rich Mullins
Sung by Brooke Fraser Ligertwood

We just got home from Birmingham. This was one of the songs I listened to on our way back. Brooke Fraser songs just lift my spirit at just the right moment.

Surgery went well. I was told to be at the hospital at 8:00 a.m. on Friday morning. My surgery was about 12-12:30. Don't know exactly when. I just know I was present in the operating room before it started ;)  Recovery wasn't a great experience due to a not so attentive nurse. I'll just leave it at that. (I didn't have to have a feeding tube this time. I know pain meds will be my friend for the next few days, though.) 

The Dynasplint did its work once again. The doctor basically did the very same surgery as before to get deeper margins all around this time. They weren't able to do a quick test in surgery. I still have inflamed tissue that needs to fully heal from the surgery on May 27th, and the results of a quick test wouldn't have been reliable.

I should, hopefully, find out the results of the pathology report on Thursday when we go back to Birmingham for my follow-up appointment. Please pray that we get a good report. The doctor said he felt good about the surgery, but he's now done everything he can do robotically.

This was my devotional from Jesus Calling on Monday: "Rest with me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. I will equip you fully for whatever awaits you on your journey. I designed time to be a protection for you. You couldn't bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you.
I am with you, watching over you wherever you go. Psalm 143:8; Genesis 28:15

One thing I do know. My God is sovereign.

No Matter What

Well recovery has been a challenge. My body seemed to majorly rebel at being on a completely liquid diet. The fact that the antibiotic prescribed for me when I left the hospital was way too strong for me sure didn’t help. After just 3 doses, I knew I was going to have to worry about becoming dehydrated whether on a feeding tube or not. I stopped the antibiotic but dealt with the after effects for a couple of days. About the time that was starting to get better, I realized I had thrush in my mouth. The body was telling me to never take that particular antibiotic again! Tylenol continued to be helpful in keeping any pain under control but my mouth was very sore from the thrush.

We went back to Birmingham on Thursday for my follow-up appointment. My doctor had some not so good news. During surgery the pathologist had checked the borders the doctor removed and all seemed clear. However, when they did the more concise dissection of the tumor after surgery there were some cancer cells at the very bottom of the tumor. The doctor said we could trust the quick test done during surgery or he could go back in and remove another layer from the base to make sure no cells were left. He left the choice up to me. Of course, I told him I wanted to make sure there was none left. He said he was glad I made that decision because he could do it July 1. He wants me to have time to heal from the surgery I just had, and he will do it robotically again. I will have to use the Dynasplint again. By not eating by mouth for a week and with the tube hindering what I could get to my mouth, my jaw has gotten tight again. Actually, tighter than it was when I first started using the splint. I started back today with a lesser tension and only 2 minutes. I will have more time to build up gradually this time. The doctor also prescribed medication to stop the bad effects of the antibiotic on my body.

So on June 30th we will go back to Birmingham to let him do this procedure on July 1. (We said he really must like doing surgery on holiday weekends!) The nice thing about this time is I won’t have to have a feeding tube. He said I probably didn’t need it the first time as he was going by his experience with other patients. The speech pathologist actually came in the afternoon after my surgery and did a swallow test with water. She said I did very well. My doctor said I’ve probably learned to adapt well to changes in my mouth because of my previous oral surgeries. That may be so, but right now I’m ready for my mouth to not be sore and my jaw to loosen up so it’s not a chore to eat. I hope that my mouth will soon feel better from the thrush and the Dyansplint will again do its job!

Here’s a song I listened to on our trip to see my primary Birmingham doctor in March. I thought it was right on. Little did I know how right on it was until we were on our way home with a big decision to make. I had a lot of questions running through my mind, but the words that stopped the questions I had no answers for were “I trust You”…no matter what.

Singing His praises

Well, if I COULD sing His praises I would, but I'm singing them in my heart! It's hard to explain how God has gone above and beyond to meet my needs. I don't know why that would be so hard. I mean He is God, and He can do whatever He wants to do. I'm just thankful He's choosing to bless me and our family!

It was amazing the total peace I had throughout the day on Thursday as we prepared to travel to Birmingham and made the trip, getting there about 7:00 p.m. I was amazed at the total peace I had as we got up at 4:30 a.m. on Friday morning to be at the hospital at 5:00. I was amazed at the total peace I had as they got me ready in pre-op and waited for them to take me back. I was amazed at the total peace I had as they wheeled me into the operating room and they prepared me even more. I just knew that when I woke up, whatever the outcome, God was in control. Whether I was able to have robotic surgery Friday morning or had to schedule the more difficult surgery for another day. How happy I was to wake up in recovery and realize I was in recovery because I had just had surgery!!! When I was able to see my husband, he was able to tell me the details. The hard work with the Dynasplint had worked. The doctor said I had gained probably 9mm in range of motion for my mouth. He said that made all the difference in being able to do the robotic surgery successfully. (Of course, I know it was the tons of prayers going up on my behalf as well to make it possible!) He told John that when he cut into my tongue he was able to see the tumor and remove it. The borders he got in the OR were clean. It sounded like when my other doctor has removed tumors from my neck. It was under the surface. 

I did have to come home with a nasal feeding tube. My doctor said he didn't want to take a chance that it would be too painful to swallow, and I would become dehydrated. So I'm up to 4 Boosts plus water and the goal is 6 Boosts plus water. Not to mention the meds I will be crushing to go down via feeding tube. Thank goodness for liquid Tylenol which is easy to push through the tube. Oh, that's another praise. I have very little pain and Tylenol helps with that. Because there is still swelling in my throat, it is still difficult to swallow by mouth very well. Hopefully, that will improve in a couple of days. I'm free to drink liquids, milkshakes or have ice cream when I feel up to it. We're supposed to go back Thursday and will most likely have the tube removed then.

I can't begin to express the amount of thanks to all of you who have been prayer warriors for us through this. All I can say is: Prayer Works!! and God Is Good...All the Time!!

I will keep you posted as I progress. Just so grateful to share this huge praise and answered prayer! It's good to be home. I'm sure I will have to find the right position for sleeping comfortably for the next week, but I'm sure Ambien will help :)

Here we go

Ok, I'm way late getting to bed and may not have a chance to post before we leave later today, much later today...being as the day has actually just started. We'll leave this afternoon for Birmingham. The doctor's office is supposed to call some time today to let us know what time we have to be a UAB Friday morning. I've faithfully been using the Dynasplint and have worked up to 30 minutes for each session. Today will give me 3 days of 3 sessions at 30 minutes each. The measurement of how far my mouth could open was 22 mm last Wednesday at the fitting. Tonight it is at 29mm. I have a LOT of people praying for me to have a BIG mouth on Friday so the dr. will be successful  with the robotic surgery. I sure don't want to be awakened and be told to go home for surgery at a later date. Yes, with God all things are possible. God just keeps showing how BIG He really is and can be! He's so amazing! This was a nice short but concise verse in one of my devotional emails today. I think I'll hang onto it: "Because he holds fast to me in love, I will deliver him." Psalm 91:14a I would love be that Servant that holds fast to God in determined love and receive the promise of his deliverance in this present circumstance. I hope to bring good tidings in a few day. Thank you for going with us in spirit and prayer and just hanging with us.

This show is on the road

I called my Birmingham dr's office and my oncologist's office yesterday. Both of their assistants called me back asking, "What's going on?" Neither had gotten any reports from MD Anderson. I faxed them the PET & CT reports, the radiation oncologist report, and the nurse's telephone report from Friday. Within 30 minutes the nurse from Birmingham called to tell me she had gotten me an appointment with the robotic surgery doctor at 2:00 for today. Would I be able to come?  I said "Absolutely!" The other assistant called to say that my oncologist wants me to see the new surgeon before seeing him. Ok, that's what I'm talkin' about!

Today was amazing! We got good news from the new doctor, Dr. M. He has scheduled the robotic surgery for next Friday, May 27. He at first said it would probably take a few weeks. He said he'd have to check his surgery schedule. Then he came back in and said, "I hope you don't have big plans for Memorial Day weekend because I can do it next Friday, the 27th". We said, "DO IT!" He said he will attempt to do it. My mouth doesn't open as wide as optimally needed. He said if he can't get all the instruments in my mouth, I will just wake up without surgery. I will get a device, a Dynasplint, tomorrow that will help stretch my jaws so that, hopefully, by next week my mouth will open wider. I'm supposed to use it 3 times a day starting out at about 5-6 minutes each time. I'm to increase my time every day by 1 minute each time. The doctor said he thinks there's a 60% chance he can do it. But with God all things are possible!! And as a friend pointed out, that's 100%! He said I will have a feeding tube through my nose for 1-2 weeks because my throat will be so sore I won't be able to swallow.

The alternative surgery would be so much more involved and with a feeding tube for about a month. God has orchestrated everything so far, I'm trusting He makes this possible, 100%! Prayer works!!

And may I just add: To God be the glory! It's all in His timing.

Hurry up and wait

If you've been checking back here to see what we found out on Tuesday, sorry for the wait. We finally heard back from MD Anderson today at 4:30. After we didn't get the call on Tuesday...or Wednesday, I called the doctor's office yesterday morning. I was told the dr. was in surgery, and they'd get a note to him and his nurse. She called today around 1:30. She had no idea why she was calling me back. After I explained, she said they were in clinicals and would call back when finished. I asked her what time that might be, and she said about 2:30. She called back at 4:30. She basically told me everything we already know. The radiation oncologist concluded I can't have anymore radiation. She did tell me that the medical oncologist relayed information to my oral surgeon in Birmingham and my oncologist here about induction chemo before surgery to reduce the tumor. She said that Dr. H recommended the dr. at UAB for robotics surgery. She then asked me if I was interested in robotics surgery! Um, that's why we were referred to MDA! So it looks like I'll be calling my dr. in Birmingham on Monday to get him to make an appt. with the dr. at UAB. Also, I'll be calling my medical oncologist to get an appt. to see what he thinks about the possibility of chemo before surgery. It better be good! I'm not crazy about spending weeks with chemo to "see if it works" when the tumor could continue to grow. I'm ready for surgery. It has gotten more painful. Feels like a sore throat all the time. It has already been 4 weeks since I saw my B'ham dr. Sure thought we'd be closer to being finished by now!

Tony Evans' post on Twitter this morning was timely and comforting: "When God is silent, He is not still." Also, on Tuesday, the reading from Max Lucado's new devotional, Live Loved. It was entitled, "Problems Have a Purpose". Trust me in your times of trouble, and I will rescue you, and you will give me glory. Psalm 50:15 NLT. He ended the devotional with these words: "Your pain has a purpose. Your problems, struggles, heartaches, and hassles cooperate toward one end--the glory of God" (from It's Not About Me). It's also been good to reread a book a friend gave me two years ago, A Reason for Hope--Gaining Strength for Your Fight Against Cancer by Michael S. Barry. And this from last Saturday in Jesus Calling, "Do not fear what this day, or any day, may bring your way. Concentrate on trusting Me and on doing what needs to be done. Relax in My sovereignty, remembering that I go before you, as well as with you, into each day. Fear no evil, for I can bring good out of every situation you will ever encounter. (Genesis 50:20 NASB; Psalm 23:4)

God is good...ALL the time!