I keep trying to blog but my computer is being difficult when it comes to writing. My cursor jumps from where I am writing to other places and deletes things, and well, while I am at, it is not very a good speller. Okay that last part is my fingers, not the computer, but it has been a chore to write, and so after getting a few sentences done, I give up and go about other things. And yet, so much is happening in my life these days.
Bug and I went to Biketoberfest in Daytona. We stayed at friends who have a house on the inter coastal. Bill and Felecia. He is a Colonial in the Air Force Reserves. A full timer. She is the Colonel's wife, and also a personal trainer. She has also been a baker and they have really cool professional ovens. And they are wonderful people. Funny, full of life, laughing, intelligent, love to party and are all the best parts of Daytona. Bill went to Embry Riddle to become a pilot, so he has lived in Daytona off and on a very long time. They love to drink, Bill beer, Felecia, diet coke and vanilla vodka. But they call a taxi whenever they are going farther than they can walk. We got there on the Thursday before my birthday and had planned on staying until Sunday, but had so much fun that we did not come back until Monday. We did all the things you are supposed to do in Daytona on a bike week. Oh, except we did not make it to the Iron Horse. We did make it everywhere else. And I had the best time. My memories of Daytona have not been good memories. I remember that every time I have been there before it involved someone in our group getting arrested, usually Bruce. Someone getting into a fight, someone getting so drunk that they hurt themselves. I remember water half way to my knees, port-a-potties, no showers, tents, rain, mud and being left for hours while everyone road their scoots off to get drunk and then try and figure out how to get back to the camp, and what camp, and where. It was not fun, and I quit going. But this year, with Bug, no one even considered getting on a bike or in a car if drinking might be involved, and we were at Daytona, so we knew that drinking would be involved. And everyone was included, and we ate wonderful food, and when it did rain one afternoon, Bug and I were safely in the Rendes Vous restaurant watching all the other bikers struggle with the rain. When the rain and roads cleared, then we rode back to the house.
On our way home, we took a side trip and stopped in St. Augustine. We walked around the San Marcos fort and then walked through the old part of town. Bug had never been there before and the magic of St. Augustine swept around him and we promised each other to come back soon. It was so tempting to have just slipped into one of the funky little places to stay there and not come out until we had visited each was tech nook and cranny, but it was tech week for The Evening of Suspense and so reluctantly we got back on the scoot and headed west, home to Labrun, home to where my "kids" were waiting for me. Home where I needed to wrap up the last details for the Suspense Program.
We had our rehearsals and practised with the dry ice on how to make it bubble. Carly got the making fire in your hand on the first try and our witches from Macbeth were ready. The other readers had practised and were all wonderful. So with a small audience on Friday night we put on or show. It ha some sound effects, some special effects and lots of very talented people ready to share the world of the macabre. We had Poe, Bradbury, Louise Fletcher, WW Jacobs, Roald Dahl and Bram Stoker. A taste from the masters of the genre across the centuries. We were supposed to do 2 shows, so that we could hopefully draw from the ghost tours, but the second show was very small and so we only did the portion they were most interested in seeing..........the witches. Angie also read he piece, but other then that, we decided to take what has now been done for the past two years, and next year add even more. There was so much going on, theater wise Friday night, we were lucky to have had anyone.
Carolyn and I had sat at the corner door Friday nigh from about 5 - 7 giving out candy to the trick or treaters. I love giving out Halloween candy, but admittedly I was a bit disappointed in that less then half the kids had costumes on, many did not even have a bag or jack-o-latern for the candy. Very few even said trick or treat. But it was still fun, and it gave Carolyn and I time to just sit and enjoy the down town of our beloved Monticello. A chance to catch our breath and relax before the evenings performance. I had been busy all day picking up the last minute things, like the dry ice, and baking cookies. I love baking and I had made three types of cookies and had such a nice time the evening before and the day of the show mixing and scooping and sliding sheets of raw dough into the oven and then 12 minutes later pulling out small golden brown rounds of sugary, gooey delight from the warm oven. As a typical southern woman I bake more in the winter. It is too hot in the summer to fill the house with all that heat, but in the winter, to open the door and feel the initial blast of hot air enveloping me in the warm smell of oven is such a joy that is filled with half a century of happy memories.
I have been off the Tarceva for almost 2 weeks. I had tried to email the amazing and most wonderful Dr. M, but my computer has been bit persnickety lately and he never received them. I finally figured this out and managed to get an email to him. He sent me literature about treatment on the Tarceva, and it says not to go off the tarceva because the cancer can grow back quite aggressively.
"... switch to a totally different therapy. Chemotherapy is more likely than not to work in these patients. One caution, however, pertains to the phenomenon of flare. Even though the cancer is growing, in a patient whose tumor has developed acquired resistance to erlotinib, most of those cells remain sensitive to erlotinib. So, if you stop the erlotinib, those sensitive cells will start growing. The resistant cells, particularly the T790M-containing tumor cells, tend to grow more slowly. You need to cover the patient, or the tumor can grow more rapidly and lead to a flare phenomenon.
When we looked at our experience, one fourth of the patients in whom we abruptly stopped the TKI were either hospitalized or died of their illness. So, it is important to keep them covered. If you are going to switch to chemotherapy and you choose not to continue erlotinib, make sure you give that new chemotherapy quickly. Do not keep the patient off of therapy for any period of time, even if you have a small period of overlap."
Dr. May has me off the tarceva, opposite of the recommendations made in this paper. I will talk to the amazing Dr. M today, and me am seriously considering going to Atlanta to resume treatments with him.
Okay, I always try to act like I am okay. That I willingly and fully accept this and I am not fighting or denying this portion of me. But I admit to being anxious? Scared? I am not sure what is the appropriate term. It was easier to accept that I had cancer and that I was going to die within a few years because of it, when my life was settled and I was alone. I was not happy with the idea of leaving all the amazing and precious beloved friends and family. I was not happy that I will most likely not hold Annie's or Jame's or Nathaniel's or Christopher's or Jessica's children. I have not had the opportunity to hold Corie/Andy's or Cole/Amanda's babies. I did not like leaving my Dad, knowing how hard it will be on him to loose his only baby girl. But now I have this life with all the wonderful things I have had all my life, and now Bug also. A man who loves to travel, explore, and plan adventures. Who doesn't just dream about adventures, but lives them. A man I fell in love with almost from the first look. A man who is in my life and supports me and loves me and who I will have to leave too soon. This is just one too many straws in the camels load, and it has given me a sense of panic. No, I was ready before, but now I want more time. Not yet.
I did not want to be at this place, with a sense of anxiety and stress. I wanted to take the pills until they did not work any longer, and then let nature take its course. Not go chasing after treatments that may add a month or so to my life. Just be gracious and make it as easy on everyone as possible and just slip away. But now, it is different. I am not looking for a magic pill to make everything all right. But I am strong and healthy and I want to go back to Dr. M, who I have confidence in, whom I love, whom I know is going to know what is best for me. Who knows this cancer so well. Who knows more about what my body can take then Dr. May could. So, I will talk to him and see what we can do. And I know that there will come a time when the meds will no longer work. But for now, give me the WMDs and let me get back to life.
It is time to be brave, as my ring whispers against right ring finger. It is not time to weep and feel sorry. It is time to feed the dogs, as they are pushing their faces into my his hands on the computer. It is cold and it is time to make oatmeal and drink hot tea and look into Bug's eyes and laugh with him. It is time to clean the house and get ready for company. Maybe Marty will fly down tomorrow in the plane that Bug helped him build. He will take us flying in this little plane. Up around the blue blue sky of autumn to look down to see the spots of color where the leaves are changing. Thursday Sparky will be here. Saturday friends will come by to share time together and laugh and talk and then head up to the Opera House for a Gatorbone concert including the cicada ladies. Then the following weekend Sioux will be here, then Thanksgiving around the corner. The holidays are upon us. Samheim is Wednesday, news years for some of us. Yes, the seasons are spinning ever closer and time will start to speed up like warp drive, but now, right this minute it s time to feed the kids.