Tuesday, July 8, 2008

22 left!

Today, I had my eleventh radiation treatment - only 22 treatments to go! The shrinking of that number does my heart so much good. This morning, one of the family said, "After today, only 22 treatments to go!" I have a rule against that, though, which I quickly disclosed. If you choose to declare how many treatments are left before the current day's treatment has taken place, you have to say the number that is currently left - not the number that will be left after that day's treatment. Meaning, it would have been fine for them to say that there were 23 treatments left, but not 22 after today. Even though it is true, it is jumping ahead, and it messes up the savoring of that moment right after treatment when I get to declare the new remaining number. Get it? I only have 22 radiation treatments left!

That's the good news about radiation. The possibly bad news is that I have hit the point during radiation when most patients start to have the worst side effects, including an unusual pairing of thick mucous and dry mouth, both relentless in their attack, along with mouth sores, sore throat, more difficulty swallowing, and dramatic skin burn. I call this possibly bad news, because I pray, and ask you to also, that God will lessen the intensity of these side effects if it pleases Him. I know He may not choose to do this as I am reminded of the thorn in Paul's flesh that was never removed, but I am also reminded of the fact that He has promised not to give me anything more than I can endure. Even more, I am reminded of the suffering our sweet Lord Jesus endured for us, and I know what I face cannot be compared to what He graciously endured for all of us. Even still, He has invited us to ask! And, ask, I will. I trust you'll do so, as well.

I also saw Dr. Gilbert today, and she made the comment that she thinks my tumor looks "much better." Now, that's the kind of thing you like to hear from your oncologist! I have also gained three pounds since last Tuesday, which is such a blessing. I am tolerating my tube feedings extremely well since the switch to pump infusion. Thank God for His provision. Eating had been such a source of stress. I'm very relieved to have that pressure removed.

One of the long-term side effects of radiation therapy to the oral cavity is persistent dry mouth due to salivary gland damage. Obviously, with my job and my singing, that would be an extremely disconcerting and maybe even debilitating side effect. Tomorrow, I begin a medication called amiphostine, which is designed to reduce this possibility. The jury is still out on its effectiveness as there is a lack of rigorous research available. Unfortunately, its main side effect is nausea, but not in everyone. Given my profession and other interests, I have decided to give it a try. If it nauseates me, I will just stop it. My first dose will be given tomorrow at 8:30 a.m. before radiation at 10:00 a.m. That will be the schedule going forward if it is tolerated.

My next chemotherapy infusion will be next Tuesday, the 15th. Again, it will be about a 5-6 hour process. Remember, I did not have bad side effects with the treatment, which often happens. We trust this will be the case again. I may or may not have a third infusion on August 5th. That will depend on tumor response to the next chemo, the remainder of radiation therapy, and simply how I am feeling. Just to remind you, after radiation ends on August 7th, there will be about a six-week break after which a CT will be done. If the tumor appears to have been eradicated, no surgery will be required on the tongue. If the lymph nodes look clear, no surgery will be required. On the other hand, even if the tongue looks clear, but the lymph nodes do not, I will have to have a partial neck dissection to remove those questionable nodes.

Some things for which to thank Him specifically (there are so many):
1. The tumor is responding.
2. Nutrition.
3. Sleep!
4. Such generosity from all of you.
5. Nausea and vomiting under control.
6. Pain is SO much better.
7. Such excellent care at Vanderbilt.
8. Prayers that I can feel!
9. Technology that keeps me connected with all of you.
10. Traveling mercies.

Prayer requests:
1. Always and above all, God's glorification throughout this journey.
2. Complete healing - yet, not our will, but His be done.
3. No nausea or other side effects with amiphostine, but successful protection of my salivary glands.
4. No surgery at the end - yet, not my will, but His be done.

20 comments:

Anonymous said...

Wow! That is what comes to mind every time I read a blog from you. What amazing grace you have in your current situation!!! You are an inspiration to me. Your website was passed on to me from one of my co-workers from one of your co-workers. Take care and continue to give God the glory - He is worthy!

Anonymous said...

Daniel,I'm so glad and relieved to hear of your progress. God is great!! I will keep praying for all that you have requested.
I'm thrilled to hear that your pain has lessened, as well. Stay strong!!

Tiffany Madish

Mom2rayray&colten said...

I'm so glad to hear that the tumor is responding and that you are gaining weight!! I know you have a long and hard road still and I will continue to pray.

I thank God for you and I'm so glad that you and I met so many years ago.

Thanks for not giving up on me! lol
I'm not giving up on you!!
Keep up the fight!!

Love you,
MUH

The Lee Family said...

Hey D!
You are amazing! We wish you were here with us, Cape Cod is beautiful. You would love it here, I can just see you two running the streets in front of these amazing homes. Oh but not our bed and breakfast, a little sad but it is cool and the bed feels comfy. We have stories and pictures to share for this gem. Telliphotog will take lots of pictures to share with you when we get home.
We love you! If Samantha visits you with her Grammy give her a kiss from her mom and dad! I am doing good, I haven't cried yet but I do miss her!
Stay strong D! I am so encouraged by your email. You sound great! See you soon!

The Lee Family said...

Hey D!
You are amazing! We wish you were here with us, Cape Cod is beautiful. You would love it here, I can just see you two running the streets in front of these amazing homes. Oh but not our bed and breakfast, a little sad but it is cool and the bed feels comfy. We have stories and pictures to share for this gem. Telliphotog will take lots of pictures to share with you when we get home.
We love you! If Samantha visits you with her Grammy give her a kiss from her mom and dad! I am doing good, I haven't cried yet but I do miss her!
Stay strong D! I am so encouraged by your email. You sound great! See you soon!

Anonymous said...

Hey Daniel! So glad to hear that you are feeling a little relief now. Hang in there, God has something wonderful in store for you soon. You're such an inspiration. Thank you so much for praying for Daddy during your struggles. Not many people are strong enough to pray for others' needs when they are so sick. God is so proud of you & He is gonna bless you for being so faithful, encouraging, & uplifting. I can hardly wait to see you stand & give your testimony for God's amazing, total healing. I believe you WILL! We're praying for you & we love & appreciate you so much. Love, Annette
P.S. "Have not I commanded thee? Be strong & of a good courage: be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest." Joshua 1:9

Anonymous said...

I am so thankful God is answering prayers! I believe with all my heart that God wants to heal you and I claim that for you every day. I will be praying for you tomorrow morning as you get this new drug and as you continue radiation. God does tell us to ask anything in His name. I am not only asking but reminding Him of His promises to us to answer prayers and to heal. May His blessings rest upon you!
I love you
Ashley

becarroll123 said...

So very glad to hear you be encouraged!! We love you and continue to keep you in our daily thoughts and prayers. Thank you for posting the specific ways we can pray for you. And glad you are back to texting. Let's pick back up.... Also, when you find the energy, please pray for Brian's dad as he finds out this Thursday the status of a growth that they have taken off of his upper lip. They are fearing it is cancerous but he will not know until Thursday afternoon. Thank you my brother!!!!

Randy Smith said...

Ahhhhhh, YES!!!!!!!!!! You're right. That's the news we like to hear!
Randy

Anonymous said...

Praying for you today, Daniel. I love that you reminded us to give thanks as well as pray.
Jen Pinkner

Anonymous said...

Daniel, what a blessing you are! Ted and I check your blog every day. You are such an inspiration and an encouragement to everyone. I'm so sorry that you are having to endure all of this; but so thankful that God is being glorified through it all. Please know that we are praying for you, your family and your doctors.
God bless you, Sherry & Ted (Ashley's parents)

"You are my hiding place; You preserve me from trouble; You surround me with songs of
deliverance." Psalm 32:7

Mommy Message said...

Oh Daniel, What awesome news!! I feel like dancing in the streets. Our God is a wonderful God! Our prayers are being answered. I now this is so uplifting to you to know just how snugly you rest in the palm of His hand. We will continue to pray for the side effects and for complete and total healing. I was looking at some old pics of us during All Sing the other day :-) I trust that God will provide for your beautiful voice. Your beautiful spirit is always safely intact for all to witness. We continue to pray boldly. Know that I love you and think of you every day my sweet friend.

Anonymous said...

Daniel,
We are so glad to read that the tumor is responding and you're gaining weight. We will continue to pray that God be glorified and for your complete healing.
Travis and Beth

Anonymous said...

Daniel,

It is so good to hear that the tumor is responding to the treatments, and that you are feeling much better. Glad to hear they got your feedings regulated and you are seeing some weight gain. We will continue to pray for complete healing and comfort for you.....we pray that this will be the Lord's will...

Love ya,

Shelia

Anonymous said...

Daniel i believe that every day when you wake (if you have been blessed with sleep) that you feel that "this is a good day". Your strenth and faith is amazing and we all can take guidance from it. I thought it rather apporiate that being named Daniel, you were born under the sign of the Lion!? You are missed, but with faith you shall return to the fold, for this to shall pass. May God bless you and keep you in his mercy Wanda B.

Anonymous said...

Daniel, I just recently heard about your situation at the hospital. I spoke with Dr. Webb who gave me your blog address. He spoke of your faith and of your eloquent writings that are more like beautiful novels about God's grace and love. You are going through such a tough trial right now and your faith appears to become stronger and stronger. I strive to walk closer to God and it uplifts me reading your praises even when you are in the valley. My prayers will continue to be with you.
Love In Christ,
Christy Gallaher, RN
White County Hospital

Anonymous said...

Daniel,
Thank you for giving God's word to me today. My recent luke-warm walk with Christ has been challenged and my brokenness has become visible. I don't have cancer, and cannot imagine what you are experiencing. I just found your blog from a link on my church's website, (Christ Community, Franklin), and clicked on it out of curiosity more than anything else. I spent the last hour reading your posts, and am mentally and emotionally drained, but spiritually uplifted. Your testimony and faith through this feeds my soul. I am greatful. My prayers will have more substance now beyond financial things and issues of worldly comfort and convenience. You will be in mine and my family's prayers.

Adam

Meg said...

we're praying for you daniel!! i'm so glad that you're feeling so much better... please let me know if there's anything that you need.

Anonymous said...

Daniel,
You are amazing! Each post you write is even more uplifting than the one before... You minister to all of us. What a blessing you are to so many. I agree with the "Number Rule"!! I am so thankful that you have been able to tolerate the feedings better and to see you have gained 3 pounds!! What a wonderful response from Dr Gilbert that the tumor looks "much better".. exactly what we want the oncologist to say. I pray the amiphostine will work and that there will be no nausea for you. You remain in our prayers and we will specifically mention those requests you listed by name. Keep up the fight and the faith... God is being glorified thru each post you write and each day thru how you have chosen to live your life for HIM. We pray for you daily... your MS family :) Tammy and family

Anonymous said...

Daniel,

Hey buddy...just wanted to share with you that Emma and I, together, prayed for you today after I read your most recent posting. Then, she took one of her teddy bears and matter-of-factly instructed him that he should pray for you too. So, they then prayed together that your "owie" on your tongue would get better. We love you, and it's good to hear the good news.

Chris Clift