Belated report is better than nothing, I hope?

I haven't really felt like posting, but some of you may still be waiting to hear about our visit this week. I am still recovering from the surgery, and we are in between appointments and are still in San Antonio. My appointment on Monday the 1st is still necessary. The protocol for clinical trials is pretty stiff, with little waggle room, so they need us to be here for that.

I started back on the cancer drug, LDE225, at a 400 mg dose, the same level I was taking when I stopped for a few days before and after surgery. The desire was to begin back at a 200 dose and work up to 400, but the study protocol would not allow it. If the dose is ever lowered because of a problem, it cannot be raised back up. So we decided to go ahead with the higher dose. I had to have an infusion of magnesium for an hour, as my blood work showed a deficiency of that.

In our visit with the surgeon, the pathology report on the tumors removed during the surgery showed five of the six had active sarcoma (cancer) cells. The other was either dead cancer cells or a benign mass. This was no surprise. Dr. DeArmond also explained why I am having burning sensation in my chest, attributing it to nerve endings that sustained damage during the surgery. He said that, having talked to Dr. Mita about it, he would be ready to operate on my right lung if and when we decided to do so in the future. We feel it is a good possibility, but are not ready to do so until I am mostly recovered from this one. Of course, if scans reveal a need to do so more quickly, we would likely do it.

I have not been feeling very well the past several days. Part of it is the pain in my chest, which actually feels like a chemical burn. The pain medicine takes the edge off, but I have been getting nauseous from the pain medicine, so I am reluctant to take it. The bigger problem I am having right now is with eating. It's not that food doesn't taste good; it is tasting bad and I have been unable to find hardly anything that I can eat without making me feel sick. I've lost at least another ten pounds since surgery. Helen is frustrated because she feels like it is her responsibility to keep my weight up, but she hasn't found anything that will work. We bought some Ensure to try; maybe that will do the job. Anyway, y'all please pray for us in these areas.

Again, many thanks to Sammy, Allen, and Tim for seeing to it that our Sunday School class has a teacher. It is a tremendous blessing to have so many who can do such a good job (I have heard how good it has been.). Thanks to all of you for your encouragement.

Love you all...

It's cramping my style (among other things)...

Well, we have been away from home for a week, and we really are missing it. I went in for a regular visit with Dr. Mita on Tuesday not feeling very well. The affects from the anesthesia still seemed to be evident, along with the hydrocodone I was taking. Breathing was still difficult. They gave me another two weeks supply of LDE225 and performed a chest x-ray just to make sure everything was OK. Dr. Mita was happy about the way the surgery turned out and said that we had taken a big step in the process.

Muscles spasms and cramps surfaced with a vengence on Tuesday evening. I had them all through that night and all day on Wednesday. They were in my hands, arms, legs, feet, chest, shoulder, and chin and were almost continuous. By 4:30 on Wednesday, I decided to call my research nurse to let her know what was going on. She talked to Dr. Mita, who advised us to go to the ER if they got any worse or if I just couldn't take it any more. They would get an appointment set up on Thursday so they could look over my blood work and look me over.

Today we went in at 10:30 to have blood drawn. We did see Dr. Mita, not our Dr. Monica Mita, but her husband, Dr. Alain Mita. (They went to college and med school together and now work together at CTRC.) They concluded that the muscle issue is related to the LDE225 drug, and we decided that I would discontinue the drug until next Thursday. He thought that the time away from it might allow us to reset and begin taking LDE225 at a lower dose, working up to where I have been. We are scheduled for two appointments next Thursday, one in the morning, the other in the afternoon.

My wounds seem to be healing nicely; my breathing is getting a little better every day. We hope to be able to return home either tomorrow or Saturday. Hope to see many of you soon. God is Good! All the time!

Love to all of you!

For a great article about the husband-wife team, go to: www.uthscsa.edu/mission/article.asp?id=545

Just a quick one...

We left the hospital today about 2:oo. I am focusing on two things right now--managing the pain and doing the things I need to do to help my lung recover. If I take two pain pills every four hours, it leaves me almost too sedated. I will fall asleep talking or eating. If I just take one, it is not effective enough, and the pain gets pretty rough. I guess I'll try somewhere in between and see what happens. I have let the pain get away from me, laying off the pills because I was feeling pretty good. I should have known better. The doctors advised me that I need to be up and about a good portion of the day, walking, sitting up, and using the incentive spirometer (a device you use to measure your intake) to keep my lungs open.

I could spend this whole blog expressing our thanks for everything that all our friends, family, and God have done for us. It still would not be enough. We are eternally grateful for all of the support we have felt.

Briefly, we will be contacting CTRC tomorrow to set up an appointment with Dr. Mita this week to discuss the study drug. We will need to get more of it if I am to continue on this medication. Our next appointment with the surgeon is set for Thursday the 25th. I will not be working at least until after that date.

I knew if I sat down and started this, I would start to get sleppy. I geuss i will sine out befor things ge........

Kenny is sort of out of it so, .....

on his behalf, we are honored to be posting to you from Christus Santa Rosa Hospital.

I am Jamie, Kenny's younger brother, and I am posting this update to you along with Shan and Stef, his two daughters (like you don't already know us). I am not capable of the quality writing that you are used to on this blog, so hopefully you will only be required to read one of my musings.

Kenny arrived on schedule at the hospital this morning for the customary lab work and pre-op waiting period. Dr. DeArmond had another surgery scheduled this morning before Kenny's 11 o'clock surgery. As is normal in a hospital, the surgery didn't actually get started until around 12:45 p.m. Several of Helen's family came to the hospital to wait with us, as did Brother Ken and Allen McGee. Yes, Allen, I may have mispelled your name! I'm sorry.

Waiting is always the toughest part when someone you care about is no longer in a "safe" and "controlled" environment. I don't understand how or why, but God gives us grace when we need it and today was no exception. After a couple of hours, the doctor came and spoke to Helen and told her that he was able to perform the less invasive thoracoscopy to remove the tumors. The biggest tumor, which was also the one closest to the aorta, was removed along with at least five smaller tumors. He got rid of all the ones he could see on the left lung. Praise God!!! There was a little more bleeding than normal, but the doctor said he was very happy to be working on someone with a healthy lung for a change. After a couple of hours in recovery, Kenny was moved to a private room instead of what we thought might be ICU. Even though he appears to be in a lot of pain, he is conversing with us and seems to be doing really well. We can't thank you enough for the prayer support that you continue to offer on his behalf. Please continue to pray for Helen as well. She is an unwavering tower of strength and is always by his side.

I will exalt you, my God the King; I will praise your name for ever and ever. Every day I will praise you and extol your name for ever and ever. Great is the LORD and most worthy of praise; his greatness no one can fathom. One generation will commend your works to another; they will tell of your mighty acts. They will speak of the glorious splendor of your majesty, and I will meditate on your wonderful works. They will tell of the power of your awesome works, and I will proclaim your great deeds. So that all men may know of your mighty acts and the glorious splendor of your kingdom. Psalm 145

Jamie, Shandria, Stefani

We arrived in San Antonio tonight...

...just in time to grab a bite at Jason's Deli before checking into our motel room. We had originally planned on coming in on Thursday, but after seeing the forecast for today and tomorrow, we felt like we should go ahead and come a day earlier. It fit nicely into the plan, as we found out today that they want to do my pre-registration and pre-op stuff in the morning at 10:30. Our decision to stay in a motel was for the sake of convenience for the first couple of days at least--it is much closer to the hospital than where we usually lodge. It's been a very busy week at work for both Helen and me, so the extra day will hopefully allow us to begin the day Friday with more energy. The surgery is scheduled for 11:00. My hospital stay could be anywhere from two to ten days, depending on several factors. We are thankful for the peace that God has given us about it all.

We are so blessed that Shandria and Stefani are both able to be here with us. We were also blessed with dry roads all the way today, which was in contradiction with all of the forecasts. We saw one that said there is 100% chance of rain and possibly snow on Thursday! Talk about bold! I think it would be funny if it stayed bone-dry. I understand that the science of meterology has made great strides over the years, but come on--I just wish I could get paid the big bucks to be wrong as often as I am right. (I really don't, but you get my drift--is that a pun? Pardon me...)

Several of our family and friends will be traveling through the weekend. Please pray for safety for them. We have received so many cards, calls, and kind words...we are continually encouraged by it all. We could never thank everyone enough!

Thanks so much to Tim for teaching SS for me this past Sunday, even though I was there. I was ministered to. And thanks to Allen for volunteering to take this Sunday's class.

I guess I should get to bed. A few long days ahead of us. I'll probably take a nap tomorrow.

Love you all

We have a date...

Our appointment today with Dr. Daniel DeArmond confirmed at least a couple of things—I am no doctor, for one. Two, I am not qualified to read CT scans effectively or accurately. Who knew?

The real doctor looked over the scans with us. He offered two surgical procedures to remove tumors from the left lung for us to ponder. He explained that the lung would be deflated and allowed to collapse before removing any tumors. The first, a thoracotomy, is a procedure whereby an incision is made large enough for the surgeon to expose the lung. A couple or more ribs must be spread apart to allow sufficient room, which causes at least one rib to break. The second, a thoracoscopy, is performed through three small incisions, one for a camera (scope) and the other two for his surgical instruments. The “scope” procedure, while less invasive, is usually enough to get the job done.

We were concerned that there would not be enough room to work around the largest tumor. He told us that as the lung is collapsed, the tumor would be pulled away from the aorta, allowing for sufficient clear margins. He suggested that while he was in, he should go ahead and remove as many tumors as he felt he could, saying that there would not be enough lost lung capacity to be a problem. After a lengthy question and answer session, Helen and I felt confident in moving forward with surgery. It was decided that we would go with the thoracoscopy, and if the need arose, he would move to the more invasive thoracotomy. The surgery is scheduled for next Friday, the 12^th.

We have heard nothing but good things about Dr. DeArmond. We are at peace both with the happenings of the day and the plans for surgery. We are encouraged and continue to believe that God is directing our steps and walking us through day by day. His grace and mercy in our lives is so amazing.

We are so very thankful for so many friends and family who have helped carry us. Your comments on this blog have been so uplifting and encouraging. We are so blessed in so many ways by so many of you.

Love you all...

I couldn't think of a title for this one

We awakened this morning to a chilly and wet San Antonio. The drive to CTRC took about 45 minutes, as traffic on the slick streets moved much slower. There were fewer patients around our part of the clinic for a Monday, so things went relatively quickly.

Dr. Mita was away for the week, so after the routine stuff we met with her assistant, Elizabeth. We had hoped to talk about options and details today, but she wasn't prepared to do so. She said that Dr. Mita had set up an appointment for us to see a thoracic surgeon some time this week to discuss surgical options, if any. That appointment is set with Dr. DeArmand for Thursday at 1:30 here at CTRC. In the meantime, I will continue to take the drug LDE225.

A few days ago it occurred to us that we had not asked just how close the largest tumor was to the heart, nor had we looked at any of our scans lately. So we asked if we could see the images from the most recent CT scans taken two weeks ago. Elizabeth was happy to show them to us, but explained that reading images was not her forte, so she might not be much help in interpreting what was on the screen. She was able to identify most of what was there, enough at least so we could make out the organs and the most easily identifiable tumors. We were surprised at how close the largest one was to the aorta, the large artery that carries blood away from the heart. To our untrained eyes, it looked like the tumor was virtually touching it, with no apparent gap in between.

Our initial impression was that there is not enough room there for surgery. But then we came to the conclusion that there would be no point in having an appointment with the surgeon if surgery would not be an option. If you have ever been in a situation like ours, you understand how your thought process can go every which way as you try to play doctor or draw conclusions based on just enough knowledge to be dangerous. We are glad that God is in control and we don't have to make things happen that need to happen. We can trust Him for that.

I guess it was a result of a two-week long build-up of tension and apprehension followed by a sudden let-down we had after the appointment today. But both of us "hit the wall." Almost instantly, we both felt totally spent. We decided to go back to the house to relax and clear our heads before determining whether to drive back home or not. Ultimately, we chose to stay here through Thursday. This way we will only have to drive 300 miles in the next few days, not 900.

We are so thankful for all of the support we have. It is such an incredible blessing to have such a great place to stay here with Janis and Don, Helen's sister and brother-in-law. Prayers are being lifted up in our behalf all over this land. God has met all of our needs, as He promised to, and He has used many of you to do so. We don't know how we would do it without God and our family in the faith. Thanks for all you do and have done.

"May the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." Romans 15:13