Tuesday we were due to go to OP and stay at Marks’s overnight. Wednesday morning, I was to have lab work and see Dr. Powers after that. I usually send him pictures in between visits, but the change was so drastic, I wanted to just surprise him. He, his nurse, the pharmacist, and a doctoral student in psychology all came in. He took one look at me and was speechless!! He broke out in an ear-to-ear grin, shaking his head, as did everyone else. No one could believe what they were seeing. He took lots of pictures of my head and chuckling said, “You may end up being the center fold in a medical journal!” I think he was truly shocked. He said with no pictures sent to him, he had no idea what to expect. I don’t have to go back for a month!
Friday, March 23, 2018
When I last left you, the new medication, Mekinist, had been approved by the patient assistance program, and I was waiting for it to arrive. Once it got processed through the pharmacy (which seemed to take FOREVER), I got it the next day. It was on Wednesday, March 7. It came by UPS, and I had to sign for it. It came in a box about 12”x8”. Inside was a same size foam container. Inside that was a bubble-wrapped large pill bottle. Inside that was a small bottle with the tiny pink pill. Ahhhh…..FINALLY.
It was about 4:00, and I took it immediately! It is to be taken on an empty stomach, so that was a perfect time each day.
By this time the entire left side of my forehead, from my eyebrow to about 2” above my forehead, and pretty much all of my left cheek had become a deep purple color. Some of my forehead was almost black.
The area on top of my head had begun to drain and would wake me up at night, grabbing for a tissue. It also had become quite painful in that it ached and was very tender to touch in the area of drainage. I was certainly not a pretty site. I was feeling pretty desperate, needless to say. So, I was so thankful to get that medication – of course not knowing whether it would work or not. I had no idea when to expect to see results if it did start to work. By March 12, there was a lighter spot developing in the center of my cheek and my forehead was a tiny bit lighter.
The skin of my forehead felt like very thin wrinkled paper. The area on the right side of my face above my eyebrow was pretty much clear. By last Wednesday, the change was startling. My forehead was a medium to light lavender, and my cheek was much lighter.
(Opps, sorry to the squeamish ones!)
The large growth on my cheek, had started draining, was shrinking slightly in size and drying – not as angry looking as in the past. Several small spots here and there have disappeared completely. Monday night a fairly large piece of dead skin peeled off the top of my head to reveal what appears to be normal pink skin. Tuesday morning, a bunch more came off my forehead.
This is all new skin on my forehead and what I looked like when I went to see Dr. Powers. Keep in mind - this is just two weeks on the medication!
This evening the little monster on my cheek, drained for the 1st time in a long time. That flattened it considerably. I think it is going to have to drain before it starts any kind of real healing.
I’m continuing to feel pretty good. I’m having trouble getting enough fluids down. Last week I had to have fluids on Friday. I was so weak feeling and my BP bottomed out. I think I must have been more dehydrated than I thought. Tuesday, as we were getting ready to go to OP, I had another weak spell and low BP, so since the infusion center was on the way, I just got another liter of fluid. I talked with Dr. Page who was in the office, and he thought I was on too high of a dosage of BP med, so he cut it in half. While seeing Dr. Powers in KC, he told me to cut out my BP med for a while unless I needed it. He would rather have me on the high side rather than low and falling out somewhere. If it goes over 140/90, I’m to take 5 mg, rather than the 10 mg. So I guess we have to work with the BP a bit.
About the only real noticeable side effect from this Mekinist is the “d” word for the last 4 nights – just about bedtime, except tonight and it was suppertime. He said to use Imodium, so I got some of that today. I’d actually feel pretty normal if it were not for my swollen eyes.
OK, that’s enough on my cancer.
Mark, Amy, and Chris came on Tuesday, and Jeannine, and the girls came on Tuesday, too. (a week ago) It was spring break for them all. Jeannine didn’t get in until late so Guy took Mark, Amy, and Chris to the farm that morning. They had a ball. They rode the tractor and the UTV all over the south part of the farm – where the tractor is stored.
Wednesday, Mark was out in the garage with a friend of his, Shad. Shad stepped out of the garage and looked to the south. “Hey, that smoke in the air looks like it’s near your farm.” The wind was VERY bad that day. Mark and Shad jumped in Shad’s SUV and drove out to the farm. Mark called back to us and said, “The farm has burned to the ground!!” He said when he got there, flames were 20 ft in the air, coming from the barn. WHAT?? We couldn’t believe it!! We all jumped in our vehicles and headed to the farm. We could see 4 separate fires burning. We couldn’t get close to start with because the smoke was too bad. Emergency vehicles were EVERYWHERE!!
To give you some perspective, the homestead sits on a paved road 7 miles south of LR. It had the old home house with a mobile home attached to the front of it. The mobile home was a 14x70 that we bought after Guy came home from Viet Nam and took a job managing a feetlot about 1 ½ hours west of here. We put the MH out of the feetlot and that is where we lived when Mark was born. After leaving there and moving to Hutch, we gave it to Guy’s parents to put on the front of their old home to give them a little more room and a nice expansion of the farm house. It was, at that time, the top of the line MH. It was really nice. It was a two bedroom, two bath, with a step-up to the living room. There was a very large old barn there, built in the 1020s. There were also a garage, a wash house (you could park a car under, that had a freezer holding popcycles the kids remember), another garage that held equipment, an old boxcar. There were another small out-building and 3 round metal grain storage bins. There was a silo by the barn. All burned to the ground expect the grain bins, the silo and the wind mill. The old home fell into the basement. (Tin from the MH in foreground)
There was an iron stairway and railing that led up to the MH, and it was still standing. Here’s a picture of the kids when they were very small, sitting on those steps. Mark is at the top, and Jeannine is at this knee in the middle. I’m not entirely sure who the others are – some cousins, probably.
Three quarters of a mile to south, down a dirt road is another farm. This belonged to Guy’s brother, Paul, at one time. It had a two story house, two 100+ year old rock (smoke) houses, a small barn, a cement milk house, a silo, coral, and several out buildings. His brother milked a large number of cows when he lived there many years ago. Several years ago (Paul was not living there, and the house was being rented), a fire went through there from north to south, and burned everything but the barn, silo, and the cement/rock houses. The renter escaped but lost everything.
After Guy took the whole farm over, he rented out the MH to some man that kept a couple mules out there for a while, but he moved out and got rid of his mules several years ago. He continued to rent the place from us over the years to store his junk out there – trucks, a bus, and camper – all old and not running.
He stored all kinds of junk in the barn. We had already taken out anything of value – mostly memorabilia – many years ago. So the home place was vacant and generally a mess that Guy dreaded having to clean up some day. So, in a sense the fire there was kind of a blessing – other than burning up a lot of memories. The kids took it all pretty hard. When they were growing up, we lived at Hutch, about 30 mins from the farm, and we went out there every weekend, so they grew up with such fond memories of time on the farm.
So, anyway, when we all got out there on Wednesday to try to see what had happened, we detoured around to try to get to the south farm, because Guy’s beloved old tractor and bush hog, were stored in that barn. Also, in the barn, was his nephew’s pickup. Guy had fence-fixing tools, and misc. tools in there. He had a Conex container a ways in front of the barn that we stored some things that we didn’t really need at the house. There was our matching love seat in there because we didn’t have room in our house for it. He had just taken his UTV out there and put it in the container for storage.
We were able to get down that dirt road and up the long driveway. There were two firetrucks in the driveway we had to drive out around. When we got into the yard, we were relieved to see the barn still standing even though the grass was burned all round. This was about 3:30, and we did not want to stay around and get in their way, so we left. We tried to catch up with the rest of the kids who were trying to find us. We were having to detour way out around now, because the fires were everywhere. Guy talked with one of the fire fighters who said that because there were so many fires and they were so spread out, it appeared they were may have been set. (Since that time, it has been said they are pretty sure they were set.)
By about 6:30, Guy had talked with another fireman that said the south barn had burn to the ground, so we headed back out there, and sure enough!
Gone!! Just a pile of tin!! Guy got out and opened the container. The UTV was OK, covered with soot!! Which means that everything else in there is also covered – including the love seat. There was a terrible plastic smell, so anything plastic probably melted. The paint on the end of the container next to the barn was blistered, so that container got really hot. Thankfully, the UTV was in the other end of it.
Nothing was insured. We tried to insure the equipment when we moved here, but they wouldn’t insure anything unless we lived there.
Saturday, Guy called a man he had used before to come out and clean up all the metal. Guy gives him the metal for his work of cleaning it up.
Now we just have to get the fences fixed before the steers come in May. Several corner posts are burned out, and several fences were cut by the fire fighters to let their trucks through. Thankfully, no other homes were destroyed in the area, although many came close.
Mark went back to OP on Saturday, but Jeannine stayed until Sunday. About a year ago, I was asked to give the program for one of the ladies’ fellowship meetings at our church. As it turned out, I was the speaker for the spring tea. I was to talk about quilts and show some of mine. Jeannine really wanted to be here for that, and the girls were so excited to help. It was going to cause her to get home really late because she had to leave about 4:30, but she said it would be OK. I had a great time. The Lord just helped me to be strong (while I was recovering from a sinus infection that week). I suppose the adrenalin was flowing well, too. I talked just a bit about the history of quilts and then showed about 50 quilts and tops. I showed the very 1st quilts I had made (1979) until now.
When it was all over, and I was starting to fold the quilts and put in my bags, I just ran out of energy – like a balloon that was untied. Jeannine had to leave, but several ladies put the quilts into bags and got them into my car while I just sat! That’s the most energy I’ve expended since I got sick, I think! One lady in our Bible study told me she thought that was the best program they had ever had! That made me feel so good. There were lots of visitors there, too. It was a great afternoon. I went home and crashed in my recliner and slept until Guy called me for supper. Jeannine and the girls made it home about midnight. She said she drove the 2nd half of the trip in sleet and snow. Bless her heart. So glad she made it safely.
Oh, yes. On Saturday, before Mark went home, Amy and Jeannine packed up the bedroom I thought I was going to use as my quilt room, and Mark and Guy and Jeannine and Amy got all the quilt fabric and book cases downstairs to the space I’m going to use for my quilt room. Mark brought in the rest of the boxes from the garage. He put the boxes marked “quilt” in the big room, and the rest in the storage room. Bless their hearts! They worked so hard!!! NOW, the work begins for me!! I have to empty the boxes and get everything organized on the shelves. I’m going to work a little bit each day. The first day I got two big boxes emptied. Then we went to KC. I emptied one box tonight, but wore out. I’ll go at it again tomorrow.
I just can’t thank everyone enough for your prayers! When we were at the dr’s appointment, the psychologist met with us after the doctor. She had a bunch of questions to ask about my support system, my mood, et.c I told her I had great support group – prayer partners all across the US; I had a terrific husband that did the cooking and cleaning, and took me wherever I needed to go; I had a very strong faith, I was very involved in my church with Bible study and playing my keyboard, and they were all so supportive; I felt good for the most part; I was a very positive person who did not let herself stay down – I couldn’t! She said, “Well…I guess that crosses everything off my check list!!”
I’m still human, and I do get discouraged now and then, but I pray, listen to my music, read the Word – you can’t stay down doing that.
If you want to pray for something specific, pray I’ll tolerate the side effects and that my eyes’ swelling will go down so I can see clearly again. And that this Mekinist is truly working – on the inside as well as the outside. I want to really believe this is the answer, but I’ve been up for it so many times, only to get disappointed each time. I do have faith, and so many REALLY DO BELIEVE with all their hearts that I will be healed. Given that this is an incurable cancer, it would take a divine miracle. At the moment it does look very promising. I would love to prove the medical community wrong and make some history – ALL TO THE GLORY OF GOD!!!!! I would love for these doctors to see the work of God’s hand before their very eyes!! I would shout from the roof tops for the rest of my life on earth!! Until then, I’m just praising God for every healing moment in my life – and there are many of those along the way. Hey! I’m still here, and I’m still kickin’!!
And as always…….I’m in His very loving and capable hands…..
Posted by Sheryl at 1:24 AM
Tuesday, February 27, 2018
Sunday was a really great day. Our church had a choir from Sterling College for our morning service. They were just so talented! Our pastor teaches some Bible classes there (about 30 minutes from LR), so he had a little “pull” to get them to come. They were just a delightful group of young people. Then we had “dinner on the grounds.” It was a full basement with 50 of them, visitors, and our regular attenders.
Sunday night I had sent an email to Dr. Powers so he would have it 1st thing Monday morning. I was feeling a bit panicky. I wondered if perhaps he might want to switch me to the other medication that was similar to the Nexavar I’m taking. Perhaps it would work better, because, by looking at my face, one could tell this Nexavar was not working. I sent him pictures as he likes for me to do periodically. The area above my forehead had opened somewhat and was oozing a bit. And this place on my cheek had enlarged a great deal. I also told him about an MD Anderson clinical trial my sister had told me about. She said there was a network in Shawnee Mission Kansas (near KC). He sent me an email back Monday morning that said: “If the sorafenib is not working, then highly unlikely that pazopanib would work, as they work very similarly on mutual molecular pathways. This other med, Mekinist, is totally different.
We will certainly submit the appeal again, but I think we need to get hospice started now. If we are able to get the drug Mekinist for you, we can always stop hospice then to give the drug a try.”
There he was again – talking about hospice. I am not about to die!! I was sitting on the edge of my bed, feeling discouraged again. Then Tiffany, his nurse, called me. She said she had read my email to him and his response back to me. She wanted to know how I was and how I felt about the email. I told her I was doing well, and I just didn’t understand why Dr. Powers kept “pushing” hospice on me. She explained that he didn’t feel like I was dying, but because I was so far from KC, he didn’t know what was available near me if I should need hospice in the future. He just wanted me to check around and make contact with hospice because they have resources that might be useful to me now. But more importantly, he didn’t want to wait until I actually was sick and in needed of resources before I knew what was available. Better to plan now, while I’m doing well and can make choices than to wait until I’m really sick to begin to see what is available. He just wants me to make an initial contact now – so that there is a plan in place when and if I need them. That made perfect sense to me. I told her I really appreciated her calling and clearing that up for me. I told her I felt a lot better after talking to her. I think our nursing home here (which is a VERY good one) offers hospice care. I know the DON, so I’ll check with her in the next few days.
I asked Tiffany about that MD Anderson clinical trial, and she said that the Shawnee Mission group didn’t have a clinical trial going – they only had access to doctors at MD Anderson if they needed them. She did look on her computer to see where clinical trials for angiosarcoma were occurring. There are 30 of them, but they are all back east except Denver (8 hours away). She told me that she had sent off the 2nd appeal to my insurance company 1st thing that morning. It was now going to be reviewed by a 3rd party, and she had a specific name to send it to. Anyway, after talking with her I started feeling more hopeful. I then called the specialty pharmacy, and Drew said there were some other areas on the papers that I had signed for the assistance program that needed to be filled out and signed. He had originally told me that those questions were not necessary to complete. So, he emailed me the document again, I filled it out, and sent it back to him. He said it might take 2-3 weeks, but if he hadn’t heard by Wednesday, he would call them. He said that the assistance program didn’t move as quickly as the appeal process.
I kept praying for the medicine to come quickly, but I changed my praying about my cancer. I started thanking God for my healing rather than asking for it. I noticed Sunday night it seemed that the area on my forehead seemed a teeny weeny bit less black and more reddish -purple. It also seemed that the area on the right side of my forehead was not as prominent. Also, the area near my left temple seemed just a bit lighter. Guy noticed it, too. I said I didn’t know if the Nexavar was kicking in finally, or if God was just touching me. He said, “Or both!” The oozing area above my forehead has scabbed over. This monster on my cheek pretty much remains. The redness around my left eye is very evident. Sometimes I find myself reading pretty much with my right eye due to blurriness of my left eye. But then at other times, it seems OK. There is still some swelling of the eyelids, but the left is worse than my right. I kind of got away from using the drops, but have gone back to regularly every 4 hours, and it is helping.
Here was my devotion for Monday morning – so appropriate, as it always is.
About midmorning this morning, Staci, Dr. Powers’ other nurse called me. She said, “Have you heard the news?” Noooo…..She said the assistance program had approved the medication and would provide it until the end of the year!!!!!! I couldn’t believe my ears!!! She was SO excited to tell me! She could hardly believe it, either. She said that I should be receiving it before the end of the week. Oh, praise the Lord!! Praise the Lord!!! I felt like it would come through, but I was still stunned. I guess I was surprised it was this soon. With me having that one marker, and this medication targeting that marker, this just may be the key that unlocks the door for me.
Here is how Mekinist works:
Targeted therapy is the result of about 100 years of research dedicated to understanding the differences between cancer cells and normal cells. To date, cancer treatment has focused primarily on killing rapidly dividing cells because one feature of cancer cells is that they divide rapidly. Unfortunately, some of our normal cells divide rapidly too, causing multiple side effects.
So tonight, I’m just praising the Lord for answered prayer, and praying this med will be the puzzle piece we’ve been looking for.
Also thankful for:
A loving, supportive, helpful husband
SO many praying family and friends – THANK YOU!!!!
Escaping the flu so far – for both of us
Warmer temperatures (not particularly the wind!)
My comfortable home
Being able to sleep well
As always…….I’m in His hands…..
Posted by Sheryl at 10:46 PM