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