Saturday, December 17, 2011

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"

Friday, December 2, 2011

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

Friday, November 11, 2011

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.

Monday, November 7, 2011

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

Monday, October 17, 2011


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)

Tuesday, September 6, 2011

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 :)

Thursday, August 18, 2011

We can do it!

I'm Gonna Love You Through It - Martina McBride

Tuesday, August 16, 2011

Listen and trust

I've been following a 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.

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

Sunday, July 24, 2011

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

Monday, July 18, 2011


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.

Thursday, July 7, 2011

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

Saturday, July 2, 2011

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.

Saturday, June 4, 2011

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.

Saturday, May 28, 2011

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 :)

Thursday, May 26, 2011

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.

Tuesday, May 17, 2011

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.

Friday, May 13, 2011

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!

Friday, May 6, 2011

We're home

It has been a long week. We left on Monday for MD Anderson, Houston and drove ALL day. Don't think we'll ever do that again. We got back yesterday about 4:00 p.m. after seeing doctors and having tests on Tuesday and Wednesday. One definite thing I've learned this week. Three doctors I consulted with agree with the doctors I already have. My doctor in Birmingham told me a year ago that I'm what they call an enigma. Well, they didn't say it in his words but basically said the same thing: enigma - something hard to understand or explain, a mystery, one that is puzzling, ambiguous, inexplicable.

On Tuesday we saw the main doctor/surgeon of the team, Dr. H. Instead of a physician's assistant coming in and taking down information for the doctor, a doctor teamed with the main doctor does that. He was young, asked a lot of questions about my history. He used a scope to do a laryngoscopy. It's a flexible scope that is inserted through the nose. He was able to examine my throat and tongue more clearly. He also examined my mouth well and felt the place where the 'bump' is. He left and said he would be back with Dr. H. In a few minutes the assisting doctor came back in with Dr. H. Dr. H also introduced me to a young doctor from China that would be observing. Everyone was so very nice. Dr. H went over my history as well asking more questions and allowing us to ask questions or comment. He too used the scope to examine my throat and tongue. Dr. H discussed surgery and treatment options. Robotics surgery is in question as my mouth may not open wide enough due to surgeries and scar tissue. He said the instruments are bulky. He highly recommended the surgeon at UAB that my Birmingham surgeon had mentioned. Dr. H said he was the best to do the type of robotic surgery I would need. That was good to hear. He said he would have to wait for test results and meeting with the other doctors to determine the best course of action. He said he would be out of town on Friday and in surgery on Monday. We would hear from him or his office on Tuesday. Then I went and had blood drawn for blood work. The last thing on my schedule for Tuesday was the PET scan. Since I could not eat 6 hours prior to that test, we headed out to find a place for lunch when I was finished.

On Wednesday morning my first appointment was with a radiation oncologist, Dr. G. He was young and very attentive as well. He also went over my history thoroughly and used the scope as well. At Dr. H's request on Tuesday we had called my home radiation onc's office and had them fax my records of previous radiation treatments. Dr. G was glad to have those in hand. After discussing the amount of radiation I had previously had, he concluded that it would not be a safe option to include radiation in this plan. There were nerves involved. It was risky and dangerous and might create life threatening physical issues. He had already had a look at the PET scan and pulled it up on the computer for us to see. We were taken aback as to how large an area was highlighted in the PET. Thankfully, there is no metastasis to any other area in my body.

Next we saw the medical oncologist, Dr. L. A doctor, referring to himself as a fellow with other hospitals, was assisting Dr. L. He asked a lot of questions about my history, taking very extensive notes. He said he would relay the information to Dr. L and they would be back in to see me. When Dr. L came in, he also went over my history. He was a kind, straight-forward doctor. He explained that chemotherapy was not advantageous with this type of cancer unless it had metastasized to another organ. My oral surgeon and med onc in Alabama had basically told me the same thing. Once the tumor is removed through surgery, there is nothing there to gauge whether a chemo is being effective. Medical Oncologists don't want to exhaust their 'big guns' if they should need a base to start from for treating metastatic cancer to major organs. Dr. L said he doesn't see cases like mine. I have been dealing with this type of cancer since 2004. The metastasis has remained in the general area of the primary tongue cancer - oral and neck - without spreading to a major organ. He said most SCC patients have had a metastasis to a major organ within 2 years of a primary and do not live far beyond this point. He had pages sent out to Dr. H and Dr. G. He got the call from Dr. G first and came back in to confirm that radiation wasn't a viable option. He said robotics surgery was questionable and the other surgical option would probably require a skin flap to my neck because of the previous radiation effects. Then he got the call from Dr. H.
As he left the room to take the call, we were left to think on all he had just told us. Rads not possible, chemo not an option, difficult future surgery, and basically, it's a miracle I'm still alive. There was a sign above the sink I had seen in the other doctors' offices that stressed the importance of washing hands before and after examining a patient. In the center of the sign was a set of open hands/palms. Across the palms were the words: It's in your hands. When I looked up and saw these words after Dr. L walked out, they jumped out at me. They immediately read to me as referring to the hands of God: It's in Your hands, without even a thought to any other meaning and said to myself, "Yes, it's in Your hands, God." I pointed it out to John, too, hoping it might comfort him as well.
Dr. L came back into the room and told us that he and Dr. H had looked at the PET scan. It was Dr. H's consensus to try chemo before surgery to see if it was effective in shrinking the tumor. Dr. L concurred that would be a good course of action. He said he could communicate with my medical onc in Alabama to get that set up. He said that the team of doctors would meet at 5:00 p.m. on Thursday to discuss my case and go over test results.

From there we rushed over to my third appointment with the dental oncologist. She, too, discussed my history and then thoroughly examined my mouth. She said my mouth looked healthy and to continue the good care. She prescribed a toothpaste with extra fluoride. Radiation to the mouth causes xerostomia - dry mouth. This can cause increased tooth decay. She also measured the space of my opened mouth as far as I can open it. She suggested I do stretching exercises to enable my mouth to open wider. From there I went straight for my CT scan. I was called back quickly but ended up waiting nearly 1 1/2 hours for the scan. The scanner in emergency was down and all emergency patients were being sent to this department as well.

Now we wait to hear back from Dr. H's office on Tuesday to know what the plan will be. We're both thinking I will be given an appointment with the robotics surgeon in Birmingham to see if he thinks I'm a candidate for this type surgery. Also, if chemo is an option, I will have to meet with my local medical oncologist.

Here are some verses that I thought quite timely as I was catching up on Twitter posts last night:

The LORD is good, A stronghold in the day of trouble; And He knows those who trust in Him. Nahum 1:7 NKJV

Keep me safe, O God, I've run for dear life to you. I say to God, "Be my Lord!" Without you, nothing makes sense. Psalm 16:1 The Message

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. Philippians 4:6 NASB

Sunday, May 1, 2011

Of His Choosing

From Jesus Calling, May 1: "You are on the path of My choosing. There is no randomness about your life. Here and Now comprise the coordinates of your daily life...Every moment is alive with My glorious Presence, to those whose hearts are intimately connected with Mine. As you give yourself more and more to a life of constant communion with Me, you will find that you simply have no time for worry. Thus, you are freed to let My Spirit direct your steps, enabling you to walk along the Path of Peace." Based on Luke 12:25-26; Luke 1:79

Saturday, April 30, 2011

A New Adventure

This present journey we are walking began in 2004. We've made many trips to and from Birmingham in the last seven years. After this last diagnosis a couple of weeks ago, we'll be starting a new adventure.

After seeing my surgeon in Birmingham on Monday, April 11, his office contacted MD Anderson in Houston to refer me as a patient. I received a call from Rochelle, my Patient Access Specialist on Thursday. She let me know that they had received the information from Birmingham, and I had to be medically accepted. A team of doctors would review my records to make that determination. She called again on Monday morning to let me know that I had been medically accepted by Dr. Hanna. She said he would be out the next week, and she would call me when she had the appointments. She called me back on Wednesday, April 20th to tell me that we were to be at MD Anderson on Tuesday, May 3, at 7:00 a.m. to sign-in at New Patient Registration. My appointment with Dr. Hanna would be at 8:00. She said that he also wanted me to have a PET scan which would be at 10:00 and a head and neck CT scan at 2:30 p.m. on Wednesday, May 4. She said he also wanted me to see 3 oncologists, and she would call me when she got those appointments set up. I later learned that I will see a radiation oncologist on Wednesday at 9:00, a medical oncologist at 11:00, and a dental oncologist at 1:00. We will have 2 full days of appointments. Unless they schedule another one, we'll be free to head for Alabama on Wednesday afternoon. This visit will be just for consults and tests. We're hoping to hear that I am a candidate for the robotics surgery and a surgery date can be scheduled.

On our drive home from my doctor's visit on April 11, there was some stress about the cost of going to Texas. I chose not to discuss it and said that God would provide. On Tuesday of this week I read a simple post by Tony Evans: "Jehovah Jireh - God's Provision Shall Be Seen." God's provision HAS BEEN SEEN every day since Tuesday! Today my Heartlight verse on my computer desktop read: "And my God will meet all your needs according to His glorious riches in Christ Jesus." Philippians 4:19. God isn't just meeting our needs financially but through the prayers of SO many people for every little detail of this trip and all it entails. I am beyond words at how God has proven Himself faithful and true to His name. I am humbled and in awe that He chooses to manifest Himself so mightily on my(our) behalf.

*The initial post was edited to allow for adjustments in my memory :)

Monday, April 11, 2011

Living With Cancer

That phrase is something I’ve had to accept as a part of my life.
I had a biopsy in December of a bump on the very back of my tongue. My dr. in Birmingham thought it was probably scar tissue but did the biopsy. We were thankful the results came back as inflamed tissue. The bump got bigger and continued to bother me, though. So, when we went for my regular routine appointment in March, I requested that he take it out. I just didn’t feel comfortable leaving it there to possibly get even bigger and be more invasive if it HAD to be removed later. He completely understood, said he trusted me, and we set up a time for surgery. I had the surgery on March 29. He said it wasn’t something he could do in his office so it was set up as outpatient. We were at the hospital at 9:00 that morning, but it was nearly 3:00 that afternoon before they got to me. I ended up staying overnight in the hospital and coming home the next morning.

We went back for my follow-up today. My dr. is always thorough and so he was with this surgery. A larger area to heal and some stitches, too. He said I am healing well. The pathology report showed…everything fine… Actually, that’s what we were thinking/hoping he’d say. He said it was cancer. Then he said we had two options. He could do another invasive surgery like I had in my mouth two years ago. It would require cutting my neck, getting a free flap from my leg, and the same process as before. Second option would be to see if I’m a candidate for the da Vinci Surgical System, which is a robotic surgery. It would be way less invasive and less healing time. He said they only do it at MD Anderson in Houston and UAB in Birmingham. After going over the options with him, he told us to talk it over on our way home, which is a 3½ hour drive. He was pretty insistent that we call his office with our decision when we got back home. After talking, we decided to let him arrange for a consultation at MD Anderson. I called his office, and we will wait to hear back from him. Living With Cancer remains a part of life for now.

My sweet, amazing daughter is coming to terms with this phrase, too. (You can read about her journey here.) Hearing those words cancer, malignant, carcinoma—and they apply to you—is terribly difficult. Not to mention the toll it takes on your family as they come to the reality that they too are a part of your journey. I could say she never dreamed to be on this road she’s walking. However, I think God saw fit to allow her to anticipate that this would some day be her journey. That, in itself, is amazing!

Last week I was reading a passage in a devotional book by John Piper,
Life As a Vapor. The passage was based on 2 Chronicles 30:1-12. He noted that in the verses the obedience of the people was based on a condition they must meet. Also, the obedience was a work of God that He produced in their hearts. He enabled them to meet the condition which would result in obedience. Piper said the Bible teaches two things: Many of the blessings of God are conditional upon our response of faith AND God Himself ultimately enables that response of faith and obedience.
“Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails.” Proverbs 19:21;
“The LORD Almighty has sworn, “Surely, as I have planned, so it will be, and as I have purposed, so it will happen.” Isaiah 14:24;
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28;
“…for it is God who works in you to will and to act in order to fulfill his good purpose.” Philippians 2:13
(Verses added by me.)

Living With Cancer. It is not within ourselves to muster up the faith it takes to live that life day by day. We do not have the will to do it. God said in Jeremiah 29:11, “For I know the plans I have for you”, declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future”. As much as we think we can plan our life, God is the One who does the planning. Does it sound like cancer is a way to prosper me and not harm me? God says so. He made me in the first place. He chose for me to survive being born 2 months prematurely over 58 years ago…and he chose for cancer to be a part of my life…for His purposes. Part of those plans is to give me hope and a future. My hope is in Him, and He is ever faithful. A future, yes, I have a future. My future is not here. My life on this earth is limited, cancer or not. My future rests in spending eternity with Him one day. That future is based on the redeeming work of the Lord Jesus Christ that is summed up in this simple verse, John 3:16. Also, this one where my pastor preached from Sunday: "Truly, truly, I say to you, he who hears My word, and believes Him who sent Me, has eternal life, and does not come into judgment, but has passed out of death into life.” John 5:24.

And this. I recently heard a message from my daughter’s pastor who is also dealing with cancer. He said, “Cancer will never have the last word in my life. God will.”

Tuesday, February 15, 2011


"Thus says the LORD, your Redeemer, the Holy One of Israel: "I am the LORD your God, who teaches you to profit, who leads you in the way you should go." Isaiah 48:17 ESV
No event in your life is a mistake. I will use every circumstance to enrich your ministry and perfect your soul. (The Come Away My Beloved Devotional Book, Frances J. Roberts)

This was a little devotional that was shared with me today by a friend before my daughter's follow-up appointment. She got good news. The cancer is only in her breast, stage 1-2a. It is hormone receptor positive. The BRCA test for the hereditary gene was negative.  It is easily treated with chemo. She will see the medical oncologist next Thursday. They will do chemo and see how the cancer responds to that before doing surgery. She said she will probably be a part of a clinical trial. They will use the same drugs, just different timing/variations. So I guess she will find out the schedule for chemo next week when she sees the oncologist. 

Here is another "snippet" that God gave me on Sunday from a speaker at a women's conference I was attending. The speaker had been talking this weekend about us having a specific, personal assignment/agenda from God. Sunday her title was Broken Pieces. She said any assignment from God comes with resources from heaven, & we have full power with authority from heaven to fulfill that assignment. At the end of the session she lifted a necklace to show us. She said it was a Sea Jewel. It is broken glass that has been worn smooth by the sea or a body of water by the natural tumbling action of the tides, the waves, and the sand. Here is a paraphrase as I put the notes together of what she said: "God wants to make a sea jewel from breast cancer with the Living Water. Take God's assignment. It will come with authority to help others who will face this."

As I have been amazed at the ways God shows Himself through my circumstances, so have she and I as she embarks on this journey He has ordained for her to take with Him!

Monday, January 31, 2011

When the storms of life hit...

Dr. Tony Evans, Weekly Devotional, January 31, 2011:

 When the storms of life hit, we are often tempted to run for cover. When they continue indefinitely, we struggle to find encouragement. When the rain and the wind gather strength until they turn into what seems to be a hurricane, we find ourselves saying, “I can’t do this any longer,” The truth is this: we can’t, but God can.

He is the only One who can help us victoriously fight through the battles of life. Nothing can provide the type of strength that He provides, especially when we feel overwhelmed and discouraged. He stands beside us, and He never retreats.

Daniel never worried about being cast into the lion’s den. He knew that the Lord would provide the help and protection he needed to make it through the night. Some of the people who read these words are fighting a battle with a life-threatening disease. It is an unseen enemy from a human standpoint but not from God’s. He knows exactly what we are facing and how it is affecting our lives.

There is an incredible sense of peace that comes from learning how to rest in the Lord and allow Him to take care of your troubles. This does not mean that you abandon the fight and just give up trying. It means that you shift the focus of your effort from yourself to God. This is where the true victory is gained.

The apostle Paul faced many life-threatening situations. At one point, he debated whether it was better to ask God to allow him to go home to heaven where he would have unending peace and glory in the presence of Christ or to continue living the earthly life God had given him. Paul chose the latter. As much as he longed to see the Lord in heaven, he loved having the opportunity here to tell others about God’s unending, unconditional love and forgiveness.

The suffering you face today is directly related to the joy you will experience in the future.

Friday, January 28, 2011

I Will Exalt You

Today has been a difficult day. My 36 year old daughter found out she has breast cancer. She went for her routine yearly female checkup last Thursday. She had noticed the lump for a couple of months but knew she was going to the doctor anyway. They did a mammogram, then sent her for an ultrasound, then sent her for a needle biopsy. She just got the results this afternoon at her appointment. She will have more tests next week: chest x-ray, MRI, bone scan, nuclear medicine for her heart (MUGA) to see if it's strong enough for her to have chemo, and more blood work. We are devastated but walking in the peace of God that he has showered over us. I know this is totally treatable. The hard part is doing what needs to be done while she still has children to raise. When I got in the car last Friday morning, I had a CD in the player that I had already been listening to. This was the song that came on immediately, and I've been listening to it over and over:

I Will Exalt You
(Brooke Ligertwood)

I will exalt You,
I will exalt You,
I will exalt You,
You are my God.

My hiding place, my safe refuge,
My treasure, Lord, You are;
My friend and King
Anointed One, most holy.

Because You're with me,
Because You're with me,
Because You're with me,
I will not fear.

My hiding place, my safe refuge,
My treasure, Lord, You are;
My friend and King,
Anointed One, most holy.

I will exalt You,
I will exalt You,
I will exalt You,
You are my God.

Friday, January 7, 2011


Came across this article today (Estrogen May Play Role in Rising Rates of Head, Neck Cancer) and found it quite interesting considering my cancer history. The breast cancer I had in 2000 was estrogen receptive. I had been diagnosed with the pre-cancerous lesions, leukoplakia, on my tongue in 1995. It sounds like the article is saying that they already know that estrogen can be a factor for changes in the lungs when smoking has been a factor resulting in lung cancer. So now they are looking into the changes estrogen may cause for some with pre-cancerous cells that result in oral, head, & neck cancer as well.  They have seen when the enzyme, CYP1B1, is targeted and slowed down it could help prevent lesions from progressing. This would be a wonderful finding to prevent further progression into O,H,&N cancer. Cancer research is alive and well!!