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