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