It's hard to believe...

...another year is almost gone. Although it probably can't be proved scientifically, I often have wondered if God's design for man somehow includes a provision whereby our perception of time is progressively accelerated from birth to death. I have never met anyone who has stated that each year that passes is slower than the one before. It seems to be a part of the common human experience. Could it be another aspect of God's grace? Most of us will admit that as we age, life gets more difficult. Is it possible that God graciously makes life more bearable for us by speeding up the process? I don't know. Just something I've wondered for a long time. I'm not being negative about this life...I love the life God has blessed me with.

Regardless, it's a fact that this year has flown by! Life has been somewhat of a roller coaster. We have gone through hard times--Dad passed away this summer; we have lost several friends to cancer; we have made somewhere around twenty-five medical trips to San Antonio, including trips for two lung surgeries; it has been a hard year at work. The blessings, however, have been too numerous to count...far out-weighing the rough stuff. Dad has gone to heaven to be with his Savior and many friends; we have been able to make twenty-five medical trips to San Antonio; I have had two successful lung surgeries which likely have prolonged my life; I am still physically able to work. We have been blessed with good health in spite of everything. We have been blessed by the support and love of our many friends and family. And to top it off, God has moved in Stefani's and Shandria's lives like never before. We are closer as a family than ever. We have been so blessed this year. God is so good.

Briefly, because I haven't updated about the past two visits: Our appointment early in December to begin my 20th cycle on this drug was fairly typical. It did include a DEXA Scan (bone density scan), which occurs every six months with my drug. We were very blessed to have both girls go with us on the next trip. We spent a couple of days with Helen's sister's family in Austin, thoroughly enjoying ourselves before driving down to San Antonio. My scan results from last time revealed what they referred to as some "significant bone loss;" however, not to the degree that anything medically should be done other than making better dietary choices and taking daily supplements of calcium and vitamin D. There is a possibility that it is linked to the drug, but it is not certain. Our next appointment includes CT Scans...

God's goodness to his people cannot be denied. We are so blessed...

Happy New Year to all...

It's been a wonderful Thanksgiving Day...

...full of good food, best wishes, and great family fellowship, not to mention some pretty decent football. Simply being alive to celebrate another Thanksgiving is such an incredible demonstration of God's grace in our lives. He has flooded our lives with rich blessings for which we are so grateful.

Monday's visit was relatively routine and things went more quickly than they have recently, with nothing new to report. We are thankful for the easy days at the clinic and for such a wonderful and caring staff who help to make undesirable situations more bearable.

"I will extol the Lord at all times; His praise will always be on my lips. My soul will boast in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exalt His name together." Psalm 34:1-3

Cycle 19 Day 1...

...last Monday proved to be another long day. Nothing out of the ordinary showed up in my labs, even though they dropped the ball and had to stick me more than once. Honestly, I can't even walk in that place without getting stuck. If I just had a nickel for every time I've been stuck... On second thought, that adage really doesn't work very well any more. Even if I have been stuck 1000 times, that's only $50. Oh well, $50 is $50. So, where was I??

CT Scans were the main event. They showed no changes. Dr. Mita even reviewed my scans for the past year, and these "spots" they're watching now haven't changed. That's great news. Even though we usually don't "worry" about the scans, it is always a big relief to hear any news that is positive. We are so thankful to the Lord for his favor. We are so grateful for so many friends who pray for us.

We still didn't get an answer about our Day 15 visits. The sponsoring pharmaceutical company is still considering our request. As of now, we will still be going in every other week. Whatever it takes...

We didn't get out of the clinic until pretty late, and we were so tired that we decided to spend the night in Kerrville rather than try to drive home. With the cooler weather and the time change, we prefer to limit our travelling after dark as much as we can. I wish I had $50 for every deer we've seen on the side of the roads... (Our Sunday School study yesterday was about greed...) :)

God is so good...

No new news is good new news...

I'm still tired from writing the previous long updates, so this one will be much shorter.

Our last appointment, Cycle 18 Day 15, was pretty much unremarkable. Although there didn't seem to be as many patients as usual, everything we had to do took a looooooooong time for some reason. There was no new news at all, so that's good. We were just exhausted by the time we made it home; I guess maybe all the trips are catching up to us. Anyway, God is good!!

We have been talking to our treatment team about asking our sponsoring drug company if they would allow us to eliminate the Day 15 visits, since most of these are pretty uneventful. The labs they do could be done somewhere else, even in Midland, if they would allow it. We are hoping to get an answer next week. We would only have to go every four weeks instead of every other week.

Our next visit includes CT scans; how quickly these eight weeks between scans seem to pass...We covet your prayers...

Overdue update, Part II

Now, for our most recent visit:

The Texas baseball Rangers (as opposed to the law enforcement Rangers) have broken so many hearts over the years that most fans have long ago given up on any chances of success in the post-season. We have been so used to failure year in and year out that, unless you are a die-hard fan or a fool, you have not even considered play-off games for years. It is with this in mind that I begin this account of our most recent visit.

The Rangers made the play-offs, a rare feat, so we decided to go to Arlington to watch them play on Saturday against Tampa Bay. (It's only 300 miles out of the way.) Friday night after arriving, we drove down to the Entertainment District, past Six Flags to see the area around the Rangers Ballpark and kind of get an idea about where we might need to try to park the next day. When what to my wondering eyes should appear, but Cowboys Stadium hit me in the face! We stared in amazement at what $1,300,000,000 (that's 1.3 BILLION DOLLARS) looks like. I don't know what else to say, except that I'll bet the big, new Wal-Mart directly across the street from the stadium does pretty good business...

Anyway, the weekend was to be the biggest sports weekend ever in Arlington, with Texas A&M playing Arkansas in Cowboys Stadium and the Ranger game both on Saturday, then the Rangers and the Cowboys both playing on Sunday (not each other, but it might have been interesting!) We had a great time at the game, even though they lost, and in spite of the hour-and -a-half drive to go ten miles to get back to the motel after the game, it was a very nice day.

For those of you who may have missed it, Sunday the 10th was literally a once-in-a-lifetime occurance, unless you happen to be a centenarian born at just the right time. The date was October 10, 2010, or 10-10-10. If you happened to be born on October 10, you are quite a special person. My Helen is such a one. So we wanted to celebrate her special day in a special way. After packing the car and checking out of the motel, we used her I-phone map ap to find First Baptist Church Arlington. We decided the middle service at 9:30 (they have services at 8:00 and 11:00 also) would best fit our schedule, and we arrived with twenty minutes to spare and went inside.

The main reason we wanted to go to FBCA was because we have close friends--a couple--from CTRC who live in Arlington and go there. We were delighted to see one of them as soon as we walked in the front door into the welcome center. To say that she was surprised to see us there out of the blue would be an understatement. And he said I almost scared the pants off of him when he saw me. We were blessed by the worship service and our time with our friends, and, after saying goodbyes, were off to San Antonio.

We opted to avoid the Austin I-35 traffic by taking Highway 281 from Stephenville, a new route for us. Coincidentally, but not really, Hamilton just happens to be on 281, so we made a pit stop to drop by and see Helen's sister Diane and her husband Doug, since we were in the neighborhood. That was an unplanned and unexpected blessing.

Our ultimate plan was to end up at our favorite eating spot, The Gristmill in Gruene, a tiny town just outside of New Braunfels, for our evening meal. The ribs there are the best either of us have ever eaten. Literally (and I am not using that term loosely), they are fall-off-the-bone ribs. The only ribs I have found that can be eaten without having to use your fingers. And the Gruene beans are also the best I have ever had. Finishing off with a huge strawberry shortcake dessert, we arrived at San Antonio Sunday evening after a very enjoyable day.

Our Monday began a new cycle (#18) on my cancer drug. The mid-morning appointment time allowed us the blessing of slow traffic, and my day at CTRC went pretty easy. I made them happy again by stepping on the scales. That's all I will say about that.

A thousand miles this trip, with some nice diversions. We both had a great time with our best friend. We are so blessed to be healthy enough to do so. God is so good to us!

Overdue update, Part I

I have been a baaaaad boy and have failed to update on our previous trip, so now I have two updates to post. Ordinarily I might let one of them slide, but because both were so eventful, I will bore you with details of both. I'll split it up into two separate posts, so perhaps you won't realize it is so lengthy.

First, the previous visit:

Another quick trip, another 650-mile 30-hour turnaround, another mid-cycle medical visit. But something was different this time--we had a special guest along this time. We were delighted to show her off to San Antonio and to show off our San Antonio to her. My mother. It had been at least 30 years since she had been there, not counting the two days she had spent at the hospital with me there in 2003 when the original tumor was removed from my arm.

We wanted her to see the charm of the Paseo del Rio (the Riverwalk), so upon our arrival we drove straight to the downtown area and quickly found a parking garage near Casa Rio, the oldest restaurant on the river. The weather couldn't have been better for enjoying an outdoor meal with an occasional wisp of a breeze blowing across the water. Afterward we walked a short distance along the river to show her some of the beautiful manicured areas adorned with flowers and plants. Then we strolled up to street level to see the shrine for which San Antonio is most known, the Alamo. She really seemed to enjoy it, but by the time we made it back to the car and began the 15-minute ride to Janis' and Don's house, we realized that we had tired her out pretty good.

Our schedule at CTRC began the next morning at 10:30, which allowed us to sleep in a little later than usual. Mom got to meet many of our friends there--patients and caregivers as well. Even though I wasn't scheduled to see Dr. Mita this time, we were hoping that we would have an opportunity to see her so Mom could meet her. She met most of my nurses and my research nurse, Pat, who is really like my own personal nurse. And she met Dr. Mita's husband, the other Dr. Mita, who is actually the Principal Investigator for this clinical trial drug I take. We were excited when our Dr. Monica Mita took time to say hello on her way to see a patient in the adjoining room and Mom did get to meet her.

I gained another couple of pounds--at a cancer treatment center they are always happy when patients gain weight. The appointment was pretty quick and harmless, and we were able to leave early enough to make a couple of stops before heading back home.

We decided to run by La Cantera, an upscale shopping mall just off of I-10 and on the way out of town. Although we don't buy there very often, we enjoy visiting because of the beautiful design and always relaxing atmosphere. We selected brick oven New York style pizza for lunch at Grimaldi's, our favorite pizza restarant and then made our way out of town.

It was such a blessing to have Mom with us on this trip. We all really enjoyed it, and I think she really needed a diversion. But we were all happy to be home again, as always. There's no place like home...there's no place like home...

Grace and Mercy

We had shared with some of you that our CT scans on Monday could be pivotal ones. These were going to be the first scans since those taken right after the last surgery, which were inconclusive. We were a little anxious to find out what these images would reveal.

Being the first day of an odd-numbered cycle and a scan day, we were ready for a long day. We began early, arriving at CTRC by 7:30, barely avoiding a heavy traffic problem created by an accident on I-35. By 10:00 most of the hard stuff was done -- all of the blood draws and scans -- and the waiting game was on. On scan days, we don't see the doctor until after she has reviewed the scan report and usually has looked at the images herself. If you have ever gotten CT or PET scans, it usually takes several days to get your results. We are spoiled -- we usually get ours within a couple of hours, because my results must meet certain criteria before I'm approved to begin another cycle of the cancer drug.

Dr. Mita was pleased with the scans, which showed no significant changes and no new nodules anywhere. There were two small nodules in the right lung that had also been in previous scans that were unchanged. She said that she thought there was a good possibility that these were not malignant, but there was no way to be sure, so we would continue to watch them in future scans. These were, however, measurable enough to allow me to continue the same treatment protocol with LDE225 on virtually the same schedule we have been on for most of the past fifteen months -- taking the drug every day, appointments every other Monday at CTRC, with scans every eight weeks.

We again are so thankful for God's grace and mercy on us. For whatever reason, He has blessed us with another good report and we are so grateful. He has seen fit to continue to make this treatment available to us. We don't know whether or not this drug is having any positive effects on my condition; we are certain that any and all healing is solely and exclusively by the hand of God, however He so chooses to perform it. We know that He has directed our steps and made our pathway clear for right now.

Thanks to each of you for all of your support and most especially your prayers in our behalf. God has used many of you to minister to us. Thanks for your calls and texts. And thanks to Allen for coming down and spending a few hours with us at the clinic and treating us to lunch. It was a real blessing to have you share some of the experience with us.

God is infinitely good!

We arrived back home...

...at about sundown this evening after a long but not too difficult day at CTRC. Although there were no scans or major procedures planned for the day, we spent four and a half hours there, mainly because the lab at the clinic was down. All the lab work and blood work had to be done at another lab across the street, so there were delays caused by that. Overall, it was a mostly uneventful and painless visit. I have gained another two pounds since last time. That's six pounds in four weeks. I am enjoying food again, maybe a little too much, and it sure is nice.

Our discussion today included what might happen following our next visit, when CT scans are to be done. I found out that I am a little weird (Oh, wait...I already knew that), or at least my situation in this clinical trial is a little outside of the norm. Because I have already been off of the drug for two brief breaks but have been allowed to go back on it, my status is different and decisions about my protocol are the subject of frequent discussions among the "tumor board." We have kind of figured that if there are no "measurable tumors" that are revealed by this next scan, I would probably be "off study," perhaps not even taking any cancer drug. That may not actually be the case, however, as it is possible the sponsors (drug company) may want me to stay on it just to see what happens. Who knows? (The answer is: God!)

Anyway, my point is, we do not really know what is ahead, whether or not the scans show masses. We continue to trust God and His good plan and ask for your continued prayers.

We love you and are so thankful for all of the support and love we feel.

Kenny and Helen

Please pray for Mom as well....

Legacy

It’s impossible for me to capture the essence of a life in mere words on a page. There is no way to do justice to the legacy of a great person in a few brief statements. It would take volumes to begin to touch the simplicities and the complexities of the man I called “Dad.”

Many of you already know that my Dad, Billy Scott, went on to be with the Lord a few days ago. Our family has witnessed such an outpouring of love and support in the past week. We have been blessed by so many who knew Dad and who felt compelled to share special memories with us. We have been comforted by so many such stories.

Even though losing Dad was something we never wanted to happen, God’s timing for this life-changing event was perfect. Seven weeks ago, we all had reached the point at which we were certain that Dad would never be able to go home again, that he only had a few days if not moments left on this earth. God in His infinite wisdom knew that we needed a little bit longer with him, so He miraculously gave him a few more weeks. Dad died peacefully in his sleep in his bed and in his home just like he wanted. Isn’t that the way we all want to go? What a blessing!

No one was ever any more ready to go than Dad. He really couldn’t wait to get there, and I can imagine that there was a “great cloud of witnesses” (as described in Hebrews 12:1) that stood just inside heaven’s gate to greet him, including many who were there because he led them to salvation. I am sure that when he caught his first glimpse of heaven, he was speechless, probably for the first time ever.

If there’s one thing I know about Dad, it is that he was a soul winner. There have been only a handful of people I have ever known in my life who were able to so freely talk to anyone and everyone about their relationship with Jesus like Dad. We joked that when he made it to heaven, he was going to be disappointed to find that there were no lost people there to witness to. In recent months, he had expressed the feeling that his time here on earth was short, since he was not able to win souls like he had always done. He really had the gift of soul winning and the compassion for others that must accompany it.

My life will never be the same without my Dad here. And although there will be many sad times in the coming days, and I will miss him terribly, I do not grieve as others who have no hope. The promise of eternal life shared not only with God, but also with those we love who have gone before us, is for all who will receive it through faith in the One who died so that we might live, Jesus Christ our Savior.

Our Cycle 16 Day 1 appointment...

...went without a hitch. Labs were pretty decent; even my magnesium was up a little. "Day 1's" of even numbered cycles are generally easy, not quite as easy as "Day 15's", but if nothing unusual is going on, pretty easy. It's the "Day 1's" of the odd numbered cycles when I usually have CT or PET scans scheduled that are normally the longest and hardest days. We make a point to have my port-a-cath flushed every four weeks, so that is done on the first day of each cycle. Anyway, we are thankful that everything went smoothly this visit.

I've been back on my cancer drug for four weeks now. When I first started it up again, I sensed that my terrible taste problem was coming back. However, it was hopefully a false alarm. I am enjoying eating more than I have in months; so much that I am no longer losing weight, but gaining. Excuse me for yelling, but I GAINED FOUR POUNDS IN THE PAST TWO WEEKS SINCE MY LAST VISIT!!!!! Many of you have petitioned God on my behalf in that area, so thank you! Now, I need to start doing enough physical stuff to burn off those excess calories I'm taking in. PRAISE THE LORD!

Back to work this past week...it wasn't too hard after the first day. I had hoped to stay for five or six hours and then maybe go home and take a nap, but we had a huge leak at the plant, so it turned out to be a twelve-hour day. I am just thankful I am again able to go back to work.

God is good...

Stef is recovering...

...at our house following yesterday's procedure in Midland. Everything went good; she just needs to try to control the pain and swelling in the next few days. She looks kinda like a cute chipmunk. It was her first time to ever be put under anesthesia. She was hilarious when she was coming out from under it. Seriously, we are thankful that everything went so good.

Helen and I both start back to work next week -- me on Monday and Helen on Wednesday. It has been quite a busy summer for us; we spent a good portion of it in San Antonio. We are glad that the timing of everything allowed us to plan my most recent surgery during the summer when Helen didn't have to worry with taking off. God really blessed us with the schedule. Our next appointment is scheduled for the 16th.

Switching gears...and on a sad note...

We were sad to learn this week of the deaths of two more of our friends from CTRC. One of the hardest things to deal with in the realm of cancer clinical trials is the realization that so few patients will benefit enough to beat the dreaded disease. A cancer patient who chooses to go this route has already been told that conventional treatment will not work. A clinical trial is most of the time considered to be a last-ditch effort. Meeting other survivors and developing friendships with some of them is one of the more rewarding experiences of the journey. Losing them is one of the toughest things. Please pray for the families and loved ones of Liz and Randy in their losses.

Our hope rests in the Lord. "If only for this life we have hope in Christ, we are to be pitied more than all men. But Christ has indeed been raised from the dead, the firstfruits of those who have fallen asleep." (I Cor. 15:19-20) "You are my refuge and my shield; I have put my hope in Your word." (Ps. 119:114) "And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us." (Rom. 5:5)

Love,

Kenny

Brief post, more later...

I wanted to let everyone know that our appointment yesterday went good...another uneventful mid-cycle one with not much to report. I have been back on the drug for two weeks, and already some of the side effects seem to be coming back. However, I am doing well.

We are preparing for Stef's surgery tomorrow--she is having four wisdom teeth plus another one cut out, so we are going to Midland to have that done. Please pray for her.

Don't have much time right now, so I will write more later...

Kenny

Back on the pills...

We have enjoyed being home now for over a week, although there has been quite a bit going on. My Uncle Don passed away last week following a long fight with cancer. We also had a Roger family (Mom's side) reunion this past weekend, so we saw several family members that we hadn't seen in a while. Helen hasn't heard back anything from her sonagram, so we are figuring that no news is good news. It was really nice to be back in church Sunday morning. It seems like such a long time since we've been.

I am back on the experimental drug LDE225 for at least the next eight weeks. I began taking it again yesterday. We will be on the same schedule we have been on for most of the past year--every other Monday we will have an appointment in San Antonio. I will have CT scans again in eight weeks, after which we will talk with Dr. Mita about what we will do next.

It was nice being off of the drug for four weeks. Although taking it has been painless, getting a break from the weird breakfast protocol has been good. I have been able to have morning coffee and regular breakfast. A lot of you have asked about how my taste issue is, having been off of the drug for a while. I am now able to tell the difference between Life Saver flavors, which was impossible a couple of months ago. And for the first time since November, I can now taste salt on my tongue! A breakthrough! We really were not sure whether or not my taste would ever get back to normal, but it appears that if I am ever able to completely get off of this drug, it may happen. We are excited about that!

A special word of thanks to Allen, Tim, and Vern for teaching our Sunday School class for the past three weeks. Thanks for your willing spirit and making yourselves available to the Lord!

Love you all,

Kenny

We have been in Lubbock today -- I'm not kidding. Helen has had an appointment with Dr. Beceiro on schedule for a year for her thyroid stuff, so we felt we needed to make it for that. We were not excited about going, but we have decided that we do what we gotta do. The crazy thing is that she has to be back on Thursday morning for a sonagram, not because he thought there is a problem, but because it's been two years since the last one. We tried to get them to do it today, but no cigar. Oh well, we enjoyed being with each other.

We made it back from San Antonio yesterday (Praise the LORD!) and were able to get the car unpacked before flopping down in our recliners in our house. Nancy and Duffy brought us supper, which was such a delicious blessing. I slept well for the first night in the last five. We are truly blessed with unbeatable accommodations in San Antonio, but there really is no place like home. Janis and Don, we could never repay you! God Bless You!

Monday was another long day, beginning with the dreaded barium smoothies at 6:00 AM. After leaving the house at 7:00, we were able to avoid a mile-long traffic jam on the way in to the clinic because we heard the report of it on our San Antonio traffic radio station, 1200 AM. CT scans were at 8:00. A couple of hours later, after the scan reports were in and Dr. (Monica) Mita had herself read the scans, we met with her. She said that, while the scans looked good to her, there was some new stuff in the right lung that probably was scar tissue and other things left over from the surgery, making the scans inconclusive. She did not think anything looked to her like cancer.

We talked with Dr. Mita at length about what to do next, deciding to start back on LDE225 for another two months, if the drug company will allow it. CT scans would be done again in two months, when the remnants of surgery should be more or less out of the picture, and the scans should be more easily interpreted. We were not able to get approval before we left, so we are waiting to get word from the doctor. If approval is granted, they will send us the drug in the mail; if not, we will officially be "off-study" and will have to go back in a few days for post-study testing (labs, MUGA scans, skin biopsy, X-rays, hair follicle samples, ECG, etc.). We hope to hear by sometime tomorrow.

I am feeling pretty well. I have no endurance at all, tiring out very quickly, which is normal following this type of surgery. We are both extremely tired, but feel that a few days at home will cure a lot of our problems.

There are not enough ways to express our thanks to all of you who have done anything to encourage us or help us. We love you all!

Late night update...

It's almost three in the morning and one of those nights when I can't sleep, so I thought I would go ahead and update about our visit on Thursday. Our appointment wasn't until mid-afternoon, so we left the house at about noon to allow plenty of time to find a place to eat near the medical center and also maybe stop by a Wal-mart for a couple of things. The weather was rainy all day on and off, and we try not to even cut it close when it might be wet. We did see a bad-looking accident on the way back at the I-35/Loop 410 interchange, where a car was upside down and they were trying to get someone out. Any time we drive up on something like that, Helen always remembers to pray for them right then and there. We pray they are OK.

After my stitches were removed, Dr. DeArmond came in to look me over and to discuss the path reports on the tumors that he had excised (cut out). The first two, which were larger, had been easy to get to and remove. These were indeed sarcomas, the same cancer we have been fighting for more than seven years. The third was deeper and harder to get to. He had seemed a little unsure about whether or not he had been able to get all of it, even though it was quite small. This tumor turned out to be non-malignant, with no traces of cancer. He said he was happy with the surgery and that he hoped I would not have to be back for any more. We discussed the fact that I am scheduled for CT scans on Monday. He thinks it is too early after surgery to have scans, because there will probably be some "foreign matter" that might show up and confuse the radiologists, like gas pockets, staples, etc. We stated that we believe that the reason they want the scans is because the pharmaceutical company that makes my clinical trial drug most likely is requiring it.

It wouldn't hurt our feelings if we didn't have to show up Monday. But we ran into our research nurse before we left CTRC and talked with her about it. She seemed pretty certain that the pharma would not postpone the scans. At this point, for the purposes of this clinical trial, they are not looking for anything new. They only want to see what is happening, if anything, at the sites in both lungs where all of the tumors have been. It's one of those peculiarities one has to deal with when participating in a clinical trial. Since the company is paying for the drug, they call most of the shots as far as protocol is concerned. This is not to say that no one cares if something else shows up. My cancer doctor, Dr. Mita, will continue to monitor me for anything new in the future.

We will find out more as we see Dr. Mita on Monday. I am scheduled for scans at 8:00. We will wait around until she has seen the scans and gotten the report, and then we will visit with her. We will probably learn at that time whether or not I will be back on LED225, as well as what we will be doing in the near future.

I have been off of the drug for about two and a half weeks. My taste seems to be slowly improving, which we are thankful for. I have been able to keep my weight pretty much stable for the past two months. I have had to shave only twice in eleven weeks. However, in the past week, I have noticed a pretty healthy number of whiskers appearing. They are not thick and hard, but more like Junior High whiskers -- soft and scattered. While you have to get up close to see them, they are there. :)

I have felt a little better each day for the past two days. The pain has eased quite a bit, my breathing is improving as well. Extreme fatigue, almost exhaustion, seems to be the biggest issue right now. I get tired very quickly doing anything. It will take a while, but it will get better.

Again, I have to say it: thanks so much for everything. We don't know where we would be without you. We love you all so much. We miss being home so much. We look forward to being able to get home on Monday, the Lord willing.

Love you guys!

Kenny

OK, we have decided...

We have made our decision...we are not going home today. We drove a few places to see how it went, and I just am not ready for a trip. So we will be here another several days.

Kenny

What to do, what to do...

The past few days have been slow going. I have been in between fighting the pain and fighting the side effects of the pain killers. We had an enjoyable 4th of July here. We ate a lot of good food, watched some fireworks and just goofed off at the house.

We are debating about whether to go home today or not. It's not so much that we feel really ready to travel, but either we do it today, or we probably don't until next Monday. I have an appointment with the surgeon on Thursday and one with Dr. Mita on Monday, so it really doesn't make much sense to go home tomorrow or Wednesday. Anyway, we still haven't decided.

Will write more later...

Kenny

From the House of Madewell...

Back to boring.......

On a rainy Friday of a very rainy week we are chillin at Janis and Don's house. We both slept pretty well last night. Yesterday I felt totally washed out, with no energy but tolerable pain. The 30-minute ride almost made me sick, so I know I'm not nearly ready to travel home yet. I am taking pain meds every four hours, determined not to let it get away from me like I did last time. I am still very low on energy, but my appetite so far has not gone south as it did before. Hopefully, it will stay that way. I have been off of the cancer drug for about a week and a half now. It seems there have been subtle changes in my taste (for the better), but it is hard to tell for sure.

Before checking out, we talked with Dr. DeArmond a little more about the surgery. He said that the two larger tumors (somewhere around 1-1/2" to 2" in diameter) were at a place that was easy to get to, and he had no trouble removing them entirely. However, a third one, much smaller and different in composition, was much harder to get to and more difficult to feel, so he was not as confident about it. He did say he felt good about how it went and that he thought he was able to do what was needed at this point. We have an appointment with him scheduled for Thursday, during which the stitches will be removed and we will discuss the tumor reports that hopefully will be ready by then. Until then, we are playing it by ear (is that a funny saying, or what?) as far as when to go back home. I am starting to get pains in areas that haven't been hurting yet, like the ribs, because I think the anesthesia is finally wearing off.

We appreciate so much all of the calls, visits, texts, fb comments, and especially prayers. It was really nice to have Bro. Ken, Elesha, RoChelle, and Mollie here during surgery to be with Helen and the girls. We are amazed at the spiritual support we have coming in from all over the place. We don't know where we would be without all of you. I don't even want to think about it.

Isn't Stef hilarious? If I had known she was going to do so well, I would have thought twice before asking her to sub for me. JK. When I sense that my readership (how many readers do you have to have to call it a readership?) is dropping off (I'm really laughing right now), I think I'll have her guest post for me.

Love you all!!

Kenny "Dirty Girl" Scott

Surgery Day...

Firstly, I would just like to say how important my daughter Stefani Rae Scott is. She is the light of my life, the bee to my knee, the flutter in my butter and because of these wonderful things I put her in charge of today's blog:

Aww thanks Dad :)

So today was the big day! We woke up this morning around 4:30, got dressed, powdered our noses (Dad included), and drove to the hospital. We arrived around 5:30 and immediately went into pre-opt. The nurses had told him that he had to take a shower with "special soap" because he hadn't done it the night before. When I was younger, that's what the nurse would always give to the dirty girl in school when she hadn't bathed either. Anyway, after his shower, they wheeled him into the holding room to discuss the procedure and went over everything, twice, three times, and so on...We then said our prayers and kissed him goodbye.

About two hours later, Dr. DeArmond walked into the waiting room. He told us that he had removed 3 tumors from his right lung. One tumor was apparently more difficult than the others to take out, but everything else went well and he could possibly be going home as soon as tomorrow.

Now, he is in his room recovering. Of course he is in pain, but in high spirits as usual. He seems to be doing extremely well! He's conversing, laughing, and even telling some jokes.

We would like to thank each and every one of you for your prayers, calls, texts, and kind words. You guys mean the world to us! Dad, you are an inspiration to us all :) Mmmmmuah! Love you, need you, goodnight!

Sorry if this is diffucult to read it has been a looooong day, it is late, and I don't speak well English.

The time has changed...

We went in to the hospital this morning to get everything ready for tomorrow and found out that the surgery is scheduled for 7:30, not 9:30 as we were told before. Even though we will have to be there at 5:30, we feel good about it being earlier. I am sure that mine will be the first surgery, which means there should be no scheduling delays because someone else's surgery went longer than expected. It will be good to get it done and over with early.

Helen and I stopped by CTRC after leaving the hospital this morning since we were in the neighborhood and we needed to pick up some barium "smoothies." We were hoping to maybe see a patient or two that we haven't seen in a while. Heather, whom we haven't seen in months, from California was there. A 26-year old who has fought cancer since she was 12, Heather has blown us away with her story. She has been coming to San Antonio from near San Deigo every other week for the past five years for treatment, mostly alone, at least since being grown. She is the epitome of what it means to bravely face giants in life with strength and grace. It really made our day to be able to see her.

It has just begun to rain here. The four of us went down to the Riverwalk this afternoon and saw Toy Story 3 at the Imax in 3-D. A great movie! So many of my childhood toys grew up to be great actors. Who woulda thought? We have had a great day, and now we sit and enjoy the rain and each other's company.

God Bless You All...

Pre-op stuff

We are sitting in a motel room in the Alamo City as the sun sets, marking the end of another Lord's Day. On our 99th trip to San Antonio since 2003, we decided to stay in close proximity to Medical Center here for at least a few days. I will go in tomorrow morning for pre-registration and blood work, EKGs, urinalysis and X-rays in preparation for the surgery on Tuesday morning. The girls are heading this way as I write and are planning to stay through at least Wednesday. Having a room within a few minutes of the hospital will make it nice and handy for Helen and them.

Surgery is scheduled for 9:30 Tuesday. The plan is the same as it was in February for my left lung. Hopefully, a thorocoscopy will be all that's necessary. Three incisions are made, the lung is collapsed, the doctor goes between the ribs to cut out the tumors, and the lung is stapled closed. If he is unable to do what needs to be done, the more invasive thorocotomy would be done in which a very large incision is made, a rib or two is broken, and the tumors are removed. Obviously, we are hopeful that the former is done and not the latter. My hospital stay should be anywhere from three to ten days, depending on how it goes. We plan to be in San Antonio for at least a week, but we are prepared for longer if necessary. I will probably miss four or five weeks or work as well.

Dad's condition has improved some in the past week, making our decision to proceed with the surgery a lot easier. He still has a long way to go, but we are thankful for the progress we have seen.

Helen will get the word out at least to a few people how things are going on Tuesday. She or one of the girls may post on this blog on Tuesday. I will update as soon as I am up to it. But if you have the urge to call, feel free. If the call comes in at a bad time, we just won't answer.

We know many of you are lifting us up to the Lord. We are confident in Him and trust Him for the outcome. He never fails us!

We love you all!

Kenny and Helen

More milestones...

God has carried us past several milestones in the past few days. Helen and I celebrated our 34th anniversary last week. I have been so blessed to be married to my best friend for all these years. Seven years ago, it seemed like a long shot to even make it to our 30th, so we are so thankful to still have each other through God's grace.

The 15th of June marked the three year mark since finding out cancer had been found in my lungs. It had been a little over four years since my original cancer diagnosis, synovial sarcoma in the left forearm, and now this same cancer had moved (metastasized) to both lungs. We remember being told that, outside of finding some kind of treatment that would work against metastatic sarcomas, my tumors would probably turn aggressive within six months. At the time, there were no promising recommended treatments, so we went home with nothing to do but to wait on the Lord. If something needed to happen, He was going to have to make it happen. Within two weeks, a new clinical trial with a crazy experimental drug had opened up, and I was a good candidate for it, so we went for it. This drug contained a live virus, actually millions of them, and for the first full year I took this drug the tumors didn't grow. For the next six months, there would be slight growth, enough to conclude that the drug was no longer effective, meaning I was ineligible to continue taking it. Two more clinical trials, and today, three years later, we are still standing. God has directed our steps as we have depended on Him to lead the way. He has never failed us!

Also last week we completed one full year on this latest new drug, LDE225. Having been one of the first patients in this "phase I" trial, I have had a few unfavorable side effects, but things could have been so much worse. Anyway, another milestone we celebrate.

We had another appointment on Monday. Most of our discussion was about the implications of my surgery next week. Dr. Mita wanted me to quit taking LDE225 for at least the next three weeks, until after July 12th, when the first post-op CT scan is scheduled to see if there are any measurable tumors remaining in either lung. If there are none, I will probably officially be taken "off study", no longer eligible to take the drug. If there are any tumors detected, the doctor and the drug sponsor will decide whether I can begin to take the drug again. So for now, I am not taking LDE225. (Maybe my taste problems will go away.)

We are preparing for next week. We expect things to be similar to the surgery on the left lung four months ago, but we know the outcome is entirely in God's strong hands. We are planning on being in San Antonio for at least a week, but nothing is certain and we'll be prepared to stay longer if necessary. While I'm not looking forward to it, we are ready to get it over and done with.

Dad has shown some improvement in the past week. He has been at Lamun-Lusk-Sanchez Veteran's Rehab Center for the past 15 days, which we believe has been good for him. It looks like he may be there for another 15 days, the Lord willing. We appreciate your prayers and concern for him and our family.

Again, we want to express our love and gratitude for all of you for all of your support shown to us in so many ways. We could not make it without you!

Love you all...

Two trips this week to San Antonio...

Before any updates on my medical stuff, I need to update about Dad's. Dad has been sick for several weeks now. He was in the hospital for ten days, during which he suffered a mild heart attack. After three and a half weeks at home, he is now in Laman-Lusk-Sanchez Veteran's Home. He has not been able to eat much for a month or longer, he is in late-stage heart disease, and is in pain all of the time. While we are hoping things will turn around for him with the help of the professionals at the facility, we know that it may not happen. He is not doing well at all, and we don't know how much longer he can survive the way things are going. Our family really needs and appreciates your prayers for Dad and Mom, whose 61st wedding anniversary was Tuesday. Dad asked us to pray specifically for two things: his suffering and for God's will to be done.

Our appointment in San Antonio on Monday included a DEXA scan, which measures bone densities. One of the possible side effects of my drug is bone loss, so I am required to have this scan every six months. They are not really looking for cancer with this, so we will not know results for a few days. I did gain the two pounds back that I had lost, so I seem to be holding pretty much where I am, which I am OK with. I think I needed to lose a few pounds anyway. Everything went all right, so we came back home on Monday.

We had an appointment today with Dr. DeArmond and set a tentative date for surgery on my right lung on June 29. He said he is seeing four masses that he hopes to be able to remove, none larger than about one and a half centimeters in diameter. Two of them should be pretty easy to get to and cut out, but the other two may be more difficult to get. He expressed confidence that he could get them all. The procedure should be about the same as last time on the other lung. We have been discussing this with Dr. Mita, and she is in agreement that this is a good move for us. We continue to seek God in all of this, and are counting on Him to make things happen that need to happen for us to remain in His will. We look forward to what He has for us.

Please pray for Lou Warren, our church secretary, who has recently been diagnosed with renal carcinoma. She is a faithful believer who loves the Lord and is leaning on Him during this time.

God is good...

This hectic life...

Life is about as hectic as it has been in a long time, between challenges at work and health issues with Dad, cancer care at San Antonio and everything else. At least it means I am alive. And I don't kid myself; I know it can get much, much rougher. So we are blessed indeed.

My Dad has been home since Friday after spending ten days in the hospital -- five in ICU following a mild heart attack. Although he has shown improvement in some areas, we are not confident that he is doing much better nor that he will get much better. We are covering new territory as a family, and are learning as we go. Please pray for us.

Our appointment yesterday was about as vanilla as it gets. My labs were back to normal ranges (as least for me), but I did lose the two pounds that I had previously gained. (If you happen to see a couple of pounds laying around, they might be mine.) I am sure the weight loss is because I have not focused as much on eating lately with everything going on. We made an appointment for June 10 for a consult visit with the surgeon, Dr. DeArmond, so we can discuss surgery on the right lung and perhaps come up with a possible date for that. I do have DEXA scans (bone scans) on schedule for our next regular visit in two weeks. We are excited that come June 1st, Lord willing, we will be celebrating one year on LDE225.

Later...

Our latest visit...

Today marked the beginning of our 13th cycle on LDE225--before we reach the end of this four-week cycle, the Lord willing, we will have completed one year of treatment on this experimental drug. Our visit to San Antonio included some fun this time--we went to the Spurs playoff game Sunday night with Janis, Don, and our great nephew. Even though it would have been much funner if they had made a few more free throws and won the game, we had a great time. Just getting to see Ginobili and Duncan and Parker and Bonner and Hill and ... we were really excited to see Steve Nash, too.

I had CT scans today at CTRC. Dr. Mita said the lungs were stable; virtually no changes in either since last time. We realize that any time we walk into the doctor's office to discuss scan reports, our lives could be turned completely upside down when we walk out. We are so thankful for God's grace and mercy in our lives. I also have gained about a pound and a half in the past two weeks, so we have even more to be grateful for. We had a good discussion with the doctor about the possibility of surgery on the right lung in the near future. She said she thought it would be a good thing to do, and because things are stable, there is no immediate need to do it. We will be considering it and praying about it in the coming days.

A real highlight of our day was the reunion of the Three Musketeers (or was it the Three Stooges?, see above photo). Helen and I have gotten very close to a couple of patients (and their wives) who have had the very same cancer as me--synovial sarcoma in the arm which has spread to the lungs. All three of us were on the same experimental drug (Reolysin) at the same time. We just developed a unique bond together, but because our treatment paths have gone different directions, we do not get to see each other very often any more. We were looking forward to today, because we knew we were all three going to be in San Antonio at the clinic on the same day. Let's just say that we all did a lot of laughing and breathing and living and still somehow avoided getting thrown out by security. It is great to be alive...

I would ask all of you to pray for my mom and dad. They are struggling with health issues and lately have not been doing so well. We love and appreciate you all...

Kenny

That annoying word verification thing...

A problem has arisen with unwelcome spam links posted as comments on this blog. They seem to be generated by an automated site, and some of them have had links to undesirable websites. They have increased in frequency to the point that I need to make some changes to attempt to keep these off. I have to delete each one individually as I find them, which is aggravating and time-consuming. I hate to have people using my website for this.

I've researched the problem, and have found that asking commenters for word verification will possibly prevent these automated abusers from doing their thing on my blog site. For those of you who choose to post a comment, it will just be one simple additional step in the process. Pleases bear with me, and please let me know if there is a problem posting this way...

The very latest most recent update...

Once again, our trip this past weekend to SA was filled with awe and wonder at the handiwork of the Lord. We were sure to drive a different route coming and going to take in as much as we could. Although the bluebonnets appear to have peaked in their intensity, so many others were at their brightest, with hues of red, yellow, purple, pink, and white almost everywhere we looked. In spite of making this trip more than ninety times, this one was far from boring or monotonous.

Yesterday's clinic visit was as uneventful as we had hoped it would be. For probably the first time since October, I didn't lose any weight in between appointments, for which we are thankful. My taste problem has not really changed much, if any, but I have been trying really hard to make myself eat more. I have been on this reduced dosage for only two weeks. It may be awhile before we know if that's going to make a difference in my taste. We are just happy that at least for now, my weight is stable.

People have told me lately that I am looking better. I'm not sure better than what. Anyway, some have even said I'm looking good. I take that to mean they think I'm good looking. It's nice to have friends like that to lift me up. Seriously, we appreciate all of the encouraging words from so many of you. You don't realize how much your support means to us.

Love you all...

MRI results are in

This afternoon we heard from our research nurse with the news about the MRI from Monday. The results were negative--meaning there was no evidence of any cancer in the brain. PRAISE THE LORD! While we were not worried about it, it was great to receive confirmation. I guess the torture was worth it.

One thing I forgot to mention in my last post -- the daily dosage of my cancer drug has been decreased by half. It's hoped (although not known) that dropping to a lower dose might make a positive difference in my taste. Ultimately, I need to be able to stop losing and at least maintain my weight.

It has been raining almost continuously since yesterday morning here. I love it! I just heard on the 6:00 news that there has been a report of 5" of rain somewhere here in town. Boy, do we need it! It looks like it may rain at least through Sunday night. Maybe we'll catch some good run-off in our lakes. We really need that.

For all of you procrastinators out there, you have about six hours to get your 1040s sent in!

Later...

Day 1 of Cycle 12 on LDE225...

...presented us with an unexpected twist. There is always a pretty full slate of blood work on the first day of a new round, but with no scans scheduled this time, we figured it would be a pretty easy day. We were discussing a recent problem that has come up with deteriorating vision in my right eye, curious to see if any other of the 20 to 30 patients on this drug had experienced similar effects. Thus far, none have, but it is still very, very early in the game as far as this drug is concerned. Coupled with the fact that I had lost another two pounds in the past two weeks, Dr. Mita ordered a (non-emergency) brain MRI just to make sure that nothing crazy is going on in my head to cause it.

If you have ever had an MRI, especially on the upper half of your body, you know it is something akin to psychological torture. After it was done, when the technician rescued me, I told him I was ready to talk--whatever he needed me to tell him, I was ready. He said he gets that response quite often. I was only in for 35 minutes or so; I can't imagine the state you would be in if it lasted several hours. Anyway, we are not really worried about the results. My eye problem is probably the result of my aging body, and the weight loss is from my eating problems. The main thing I'm worried about is that they won't find anything in there. It would only confirm what many people already think about me. Oh, well...

Anyway, we had a super good Saturday in Austin, as we celebrated the marriage of our niece Jillian and new nephew Joel. Many of Helen's family were there, an invasion by invitation, but a good kind. It was really great to see all of them. God blessed with perfect weather. It was inspiring to witness a young couple who seek to serve God and one another for the rest of their life.

If you have never enjoyed wildflower watching, you really should learn to. It's one of Helen's and my favorite things to do in early spring. We look forward to it every year. We have been known to just take off with nothing else planned except to find the most awesome display out there. This year has produced perhaps the best crop in recent years, thanks to timely rainfall in late winter. There is usually a very brief period of optimum viewing, limited to a couple of weeks, and now is the time this season. The drive just east of Mason was especially amazing. It is just as if God took His creative paintbrush and splattered the colors across the fields and road sides with beautiful bright colors.

"Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these. Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?" (Matthew 6:28b-30) The Message says it this way: "...walk out into the fields and look at the wildflowers. They never primp or shop, but have you even seen color and design quite like it? The ten best men and women in the country look shabby alongside them. If God gives such attention to the appearance of wildflowers--most of which are never even seen--don't you think He'll attend to you, take pride in you, do His best for you?"

God is so good...

The very latest...

There is not much news to report from our latest appointment. Mid-cycle of round eleven was one of our easiest and quickest days at the clinic. Most of the discussion was around my losing another three pounds since our last visit. It is still believed that the sense of taste issue is a side-effect of the drug, and it may become necessary for us to decrease the dosage to see if it will help. We continue to watch this closely.

The magnesium pills I have been taking do seem to be helping. For the first time in four visits, I didn't have to have an infusion. That was a blessing. When we arrived at the clinic, we found that all of the "Phase I" treatment personnel and equipment had been moved to the other end of the building. They had been talking about such a move for months, so we began to believe it wasn't going to happen. The new treatment room is much more attractive and spacious. It should be quite an improvement.

We feel so blessed to have a place like CTRC. We love all of the caregivers there, from the doctors and nurses to the volunteers to the schedulers and everyone in between. The care we have received has been administered with love. We have gotten to know so many fellow cancer survivors and their spouses, each one with their own unique story. We are inspired by all of them, warriors who refuse to give in and won't give up. Almost every visit we are given the opportunity to meet someone new and share pieces of our common journey together. We have been blessed so much! God is so Good!

Love you all

Another Monday at CTRC...

...this time began cycle # 11 on LDE225, which translates into 40 weeks completed. That's over nine months on this drug. CT scans were done first thing, and in order to continue on the present course, tumors must be deemed "stable or better." Dr. Mita jokingly said the radiologists were wondering what treatment had caused the disappearance of the masses in my left lung. The ones in the right lung were virtually the same size, so we were very happy with that.

We have been considering the possibility of surgery on the right lung, but feel that I need more time to get over this one before doing so. So the "stable" report means that there should be no urgency to do the surgery. My next scan is in eight weeks, so we will see what is going on at that time. In the meantime, our schedule looks the same as it has been for most of the past nine months.

I have not been doing much for the past couple of weeks. We have enjoyed our time at home, and it has given me some time to recover from surgery. My regular breathing is pretty close to normal, but any time I exert I am easily winded. Time will help with that, as well as gradually increasing my level of activity. I haven't been back to work yet, but plan to begin on Monday.

The biggest problem I am having, and it seems to be working into a bigger one, is eating. Much tougher than I anticipated, it's gotten to a point where absolutely nothing tastes good--everything tastes bad. It's a struggle every day to figure out something I can eat, and it is becoming a real problem. Please pray for us about this.

Thanks to all of you so much for all of your love and support.

It's good to be home again.

We have spent the bigger part of the past couple of weeks away. We are looking forward to spending the next several days with our dogs, our girls, our family, and our friends, not necessarily in that order. We have such a super good home away from home with Janis and Don, and we have such great fellowship with them, but, as the girl in the red shoes said, there's no place like home.

We had a mostly routine mid-cycle visit today with Dr. Mita's PA, with the exception of another hour-long infusion of magnesium. For some reason, my level is lower than normal. I guess it's time to start back up on the mag pills and the almonds. In the past two-and-a-half years, I may have the world record for eating almonds, mostly during the time I was being treated with Reolysin. That really knocked my magnesium down. Anyway, as I've said before, routine is good at this point. Our next visit involves CT scans, the first since surgery. Should be interesting to see what it all looks like.

I have been eating better the last two days. Helen made me a nuclear milkshake last night, using chocolate flavored Ensure and chocolate ice cream. It was loaded and probably the reason I've gained two pounds back. I think it had enough calories in it to boil water. Food has not tasted as bad, for which we are thankful. I know several of you have prayed about that on our behalf. (to Dora's Daddy: If I didn't like lobster before surgery, do you think it's possible I will like it after surgery? Maybe I should try it! :) )

We are tired, as usual, and Helen works tomorrow. I'm not sure how she does everything she does. She has become my bodyguard, my caretaker, my chauffeur, as well as everything else she's always been to me. It's just God's sustaining grace as she yields to Him. I'm so thankful for her. God has so blessed me with her.

"Praise the Lord, my soul; all my inmost being, praise His holy name. Praise the Lord, my soul, and forget not all his benefits--who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's..." (from one of my favorite psalms, Psalm 103.)

Kenny

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

Just a brief note...

...to ask for your continued prayers for our family as Helen and I will be seeing Dr. Mita Monday morning. We feel this is a pivotal appointment as we discuss possible options. We don't have a clue whether we will be staying for several days or just overnight, so we are preparing for both. While we are not scared, we are somewhat nervous and apprehensive. We know many of you have been praying for us. Our friend Nancy told us that God has a plan, that Dr. Mita will also have a plan, and that we should pray them into agreement. That's what we want! God's plan is good and He is trustworthy!

Love and thanks...

The latest news...

It seemed a little odd this time going down on a Monday and going in on Tuesday. Because they were closed for the holiday, CTRC was busier than usual on Tuesday trying to catch up. My CT scans were scheduled for 8:50. We are glad when they are early like that. By about noon time, we were sitting and talking to Dr. Mita about the results. The largest of the tumors had grown a centimeter since my last scans eight weeks earlier, while the others were virtually unchanged. She was concerned about the largest one, because it is deep in the left lung and near the heart. She explained that if it continues to grow, it could cause some problems with the arteries leading into the heart.

She said that she would be conferring with colleagues about whether either radiation to shrink it or surgery to remove it would be a viable option. Either would normally be an option, but because of its proximity to the heart, she was not ready to commit to either as viable. She plans to have all the facts for us to discuss during our next appointment. I will stay on the LDE225 pills at least until then.

We continue to trust in the LORD. His good plan for us has not changed. He will work things out for our good and for His glory. We continue to covet your prayers for all of us as we face decisions in the coming days.

Love you all.

It's been way too long...

since I've posted...I would like to make excuses, like I've been crazy busy at work (I have), or I've been trying to get over being sick (true, too), but the truth is that I really just haven't felt motivated to write lately. Apologies to any of you who may have checked for an update...

There were some interesting developments the week after Christmas. I had no episodes of muscle cramps anywhere in my body for six days in a seven-day period. Since September I have had cramps virtually every day--some days pretty severe, some days relatively mild. So this was quite a welcome surprise. Even more surprising was that for three of those days I began to taste food. I didn't want to get too excited yet, but I wanted some steak! Quickly, before it went away! Helen heard my plea and granted my wish. It made me wonder if perhaps I had been given a placebo for two weeks, but we concluded it was more likely the result of either the Tamiflu I had taken for five days or the Augmentin I was on after that. Anyway, my sense of taste went away and the cramps came back, but less frequently. Since then, there have been a couple of days when I could kinda taste food. I'll take what I can get of that.

There really was very little to report about our last visit, day 15 of cycle 8. My blood work was pretty much the same as usual, mostly within desired ranges. However, my medical team was quite interested to hear about the cramps and taste developments. They deduced that it may have happened because one of the drugs might have interfered with the cancer drug, LDE225. Although it was all speculation at the time, it sure will give the doctors and drug company something to investigate. Anyway, before we got away, they gave me a prescription for a cheap drug that they hoped would help with the cramps. I think it may be helping some.

Our next appointment will be on Tuesday, not Monday, as CTRC will be operating with only a skeleton crew on MLK Day. We will be leaving on Monday, not Sunday, so we are looking forward to staying for worship. I will be having CT scans this time, so we ask for your continued prayers.

By the way, happy new year to all of you!

We love you all!