So much to say

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.

Changes

It is a gray morning here in Lamont.  I am sitting in my red chair with my sweet shy Bella Luna on my lap.  Such a sweet precious one.  Constantly out shined by the more demanding Stella Bella, the charming Henry and the diffcult Marina.  But here we sit companionably as I struggle to post.  I have downloaded something on to my computer and it is making my usually easy going piece of machinary into a stuttering and obstanant difficulty.  Bug has looked at and cleaned it and has made it where I can at least post, but it far from the compliant machinethat I have loved writing on in the past.

Stella has joined Luna and I on my red chair and is not happy that Luna has somehow managed to get to my lap first.  Ednarose is a sleep at my feet, Bob in his Chair and Harry is stretched out part way in the living space, party in the kitchen.  It is nice to be able to sit here and write again.  I miss my time here, but life has changed and I have more in my life now then cancer, 3 dogs, 4 cats, 14 chickens, a handfull of goldfish and a stray rabbit hopping across the yard.  I love my place here and my gardens and the quiet joyful peace that surrounds my little family like a bubble.  But I also love to travel, and my life has been so rich with that lately.  Spain, the Eastern Seaboard, the west an midwest of this country. 

I have made a couple trips home to Palmetto to see my Dad and family. I went down last Wednesday and came home on Friday.  My trips are quality, not quantity.  Dad and I went to Applebe's for dinner on Friday night.  This is the place that my older brother, Rob takes Dad.  They go every few weeks or so and it is obvious that they have a good time, in that Dad wanted to take me there.  Thursday I drove him in the toy with the top down to his podiotrist appointment to have his nails done.  Then we drove over to Marie's to visit her.  She is doing better these days, and they are so good for each other.  Then we went to Home Depot where I bought a pre made railing for Rob to install on the ramp in Dad's house.  I bought too much, but I gave him the receipt and told him to take back what he doesn't need and to pick up whatever else I did not get, like the hardware, with the store credit.  He was pretty excited about the railing, and figured out how he wanted to install it.  After Home Depot Dad and I had lunch at Bob Evan's.  It has changed tremendously since Dad and I ate there.  It is now more of a cross between Denny's and the Cracker Barrel, white midwestern food, consistently prepared.  Dad's kind of food.  I had a grilled cheese.  Grilled cheese, my kind of food.

After lunch Dad and I went shopping at Wally World.  My birthday is next Monday and my family wanted to have a family party, as is our tradition.  They had suggested we go out, but that is so hard on Daddy and Marie would not have come, and it is expensive to take a couple of big eating kids out to eat.  So I suggested we just stay at Dad's and pick up some fried chicken and fixin's.  Rob had asked me to pick up a couple of mats for the ramp.  With minimal railings, not reachable from all parts of the ramp, and no mats, it can be a bit treacherous for Dad to manuever.   I hate the carpet in my place, and so I suggested that Dad buy me a couple of nice throw rugs to cover some of the animal stains on the carpet that will never go away.  We looked at the carpet together and settled on the things we wanted and then we picked up so milk and OJ for Dad.  That man loves to shop.  He rides the little buggies and just putts along looking at all the things to buy.  He found a Christmas present for Marie, he loves to buy clothes for the woman in his life, and he just tooled along happy to be out and about. It wears him down, but he needs to get out more.  We drove back home with the top down.  I could not put it up because he railing were in the back seat, too big for the trunk.  Christopher and Nathaniel came down and helped me remove the railings from the car and then Cristopher and I finished cleaning the house for the party that evening.  We set up the tables on the back screened porch and pulled the chairs out and wiped the dirt and grime they aquired from sitting for so long with no use.  Then after making sure Dad was comfortably resting, Christopher and I hopped back in the toy, he over the top of the door in the old Hiawii 50 fashion and we drove up to Publix, where shopping is a pleasure.  We picked up boxes of fried chickens, extra legs, then potatoe and macaroni salad, cole slaw and baked beans.  Dad and I had picked up animal planet party supplies at Wally world, so so flowers for the table and the all important cake were our last big decisions.  A pot of spider mums in gold and bronze and a fancy decadent chocolate cake rounded out the fare.  I also picked up a package of cupcakes with icing the color of the mums so Dad could have cake, he is not a big chocolate cake fan, and also so everyone could take a cup cak home with them.  Gift bags with posters and cards and glow sticks and a cup cake, nice treats to take home after a party.  JongAe had lost her voice and obviously did not feel well, but she was there.  Tom and Pat had picked up Marie, then Pat had been taken home to rest.  She is having seriou siatic nerve problems, and even though she was adorable with her short haircut, the pain showed on every inch of her body.  I was so taken back that she would stop by at all.  I don't think I could have done that in the same pain.  I would have just gone home from the doctors and crawled under the covers until the pain meds they have prescribed for her had kicked in.

The rest of us gathered together and filled plates to over full with the Southern fare so familiar to all of us.  We ate and laughed, and then filled plates again.  Twenty two pieces of chicken disappeared like wheat with loqust.  Sweet tea splashed in the red solo cups and we looked at each other, aging brothers an sister, a father frail with age, kids getting taller by the day and it was just magical.  All of us kept repeating how much we enjoyed getting together like we used to do.  How nice it is to once again gather at my parents home around the tables in the back yard, the screen room, Mother's little oak, now huge reaching over the fiberglass ceilings.  A place so familar, so a part of the happy times in our life as a family.  It was good.  And I made out like a bandit.  I had wanted a folding bike basket and Rob and his family got me the exact one I had asked for.  Jessica picked out my birthday card, which was a dog, and was very cute.  Tom and family bought me the latest release of Rick Riordan's heros of Olympus series.  Christopher and I are reading that series together.  He was a little taken back that I should get the new release before him.  hee hee, ah, the joys of age.  The candle was lit on the cake, a wish made, a breath of air to carry it on the wind to the place where wishes come true, and we all dug in again. 

After the meal was done, everyone helped to put the porch back to right, hugs were shared and my brothers drove off into the night to dream in their own beds.  Dad and I left in the quiet after all the noise and confusion of a loud happy family and driven off.  We smiled and taked about what a nice time we had had.  We reminisced over past times and looked at photos from our trip to Spain in June.  Then I walked back to my bedroom, still there at 57 in my parents home and laid my head down and dreamed.  My wish already come true.  A happy birthday with my precious beloved ones.  And still more time for more time to celebrate with precious ones.

Returning home I threw myself into the details of An Evening of Suspense.  Rehearsals are under way and I am enjoying this modified play time wth my precious friends.  Yesterday Bug and I went up to visit Dr. May, my Oncologist.  I had had a PTScan last week, blood labs run this week and I was to hear the good news that I am a miracle and still doing better then anyone could have predicted.  But life is about change.

The PTscan shows that the lymph nodes in my neck and behind my breast bone are fully engaged with cancer.  One node is extremely enlarged.  Change.  The Tarcevia alone is no longer able to keep the cancer at bay.  Change.

But I am stronger these days, physically and mentally and Dr. May is not giving up on me.  We will go back and revisit some of the chemo that Dr. M started when I first came to his care. My body was not strong enough then to handle the infusion, but it did a great job halting the cancer.  Maybe this time I will be able to tolerate it better and it can knock this cancer back down, and then we can go back on maintenance.  Maybe. 

Before I met Bug, I was ready to stop treatments when the Tarcevia quit working, but now, as long as we can maintain quality of life, I am willing to try some of themore aggressive treatments if it means I get another year.  We will see.  I don't know what is to come of all of this, but I am ready to see what will happen.  Tomorrow Bug and  I will mount up on his red Harley again and drive to Daytona for Biketoberfest.  We will stay with his friends, Bill and Felecia in their home on the intercoastal.  I have not been to a bike rally in many many years, but I am looking forward to this. When we get home on Sunday, it will be a week of busy while we prepare for the Evening of Suspense Friday night.  After that, I am not sure.  I will find time to be with my precious ones to celebrate yet another birthday I was told I would never see.  I will rest a little and then get busy on the house and property as the days fade from fall into winter.  It is already chilly here.  The oaks have dropped more acorns then normal and the wooly bear catepillars are mostly black. A hard winter ahead.

But for now, I am happy, strong and healthy, despite the news about my cancer.  The busiest time of the year for me has already started and I am ready to dive in.  And maybe I can get my computer to work better.  Sorry for the misspelled words, but I can not get it to autospell because of the stutters and slow down.  It won't be the first misspelled words I have posted here.  I am just happy to have had the chance to remember all of this and write it down now.

Saint George Island

What an amazing adventure Bug and I had.  What an amazing summer we have had.  Bug and I have been living the life as world travelers.  June was the trip to Spain with Dad, July/August was the trip with Christopher where we traveled up the eastern seaboard taking him to 16 states plus Washington DC, covering 5100 miles.  Then August 21, Bug and I and a friend, Sparky loaded up on the Harley's and headed for Shreveport, to attend Keith's retirement from the Air Force.

We got home September 27 after travelling on the scoot over 7500 miles and 22 states.  We also took a couple of trains, a boat and made some trips in cars.  It was the opportunity of a life time.  An adventure that people dream of, but never seem to take.  We heard that over and over from people who wanted to stop and talk to us when they saw we were on a Harley with out of state tags.  They were amazed and intrigued by our trip.  More then once we heard couples walking away talking about how they had always talked about doing the same kind of trip and how now it was too late. 

It is interesting to have strangers walk up to you and within a few minutes are telling you their hearts desires.  Like we were magical fairy godparents who could make their dreams come true.  Maybe they were able to whisper hopes to us, strangers, that they could not tell family and friends.

I was amazed how easy it was to do.  I do not mean that it wasn't physically challenging at times.  Or that it wasn't a lot of work unpacking and repacking the scoot and trailer everyday.  That sitting for 6, 8, 10 hours or more riding for 300 - 500 miles a day did not wear on us.  But to get to see this beautiful country.  To travel where you are in the environment.  No air conditioning when we drove through the Mojave desert.  No heater when we headed out some mornings and the temps were in the 30s.  No air filter to protect us from the smoke in Montana that burned our eyes, nose and throat.  No roof if it rained, but we only had a moment of rain for the entire trip.  The smells of the trees, vegetation, the soil and rocks.  The smell of water running down a sheer rock wall.  The smell of the mossy, fern fens of black organic soils around the base of the giant redwoods.  The perception of  sizes and distance as we rode up the Oregon coast line.  Riding among the coastal redwoods as we slipped through the sun shaded world.  To be so small, so close to the earth compared to the tops of of the branches soaring up through the blue of the sky to touch the clouds.  Then to fly out of the middle earth to the top of the planet as you look done the Pacific coast line.  Rough rocky cliffs dropping away from the road we swooped along.  The marine layer rolling up the vertical cliffs on to the road and up the next cliff.  Fingers of thick heavy gray clouds masking our view of the Pacific far below us.  Now we were the giants in the clouds looking down to the rocks below, tiny in our perception from the precarious perch.  On a trip like this, we are the journey we are so much a part of it.  Traveling is like that, sometimes you are on a trip and you are so in the moment.  Enjoying the adventure, not missing the journey because of the end. 

Today I sit in the funky little beach cottage on St. George.  I am at the beach.  I am at the beach with my Vicki and Nancy.  Vicki and I are home.  We have white sand under our feet, in our clothes, scrubbing us clean and still stuck to the back of our legs.  We have walked the beach and watched sunsets and storms rumbling across the Gulf towards us.  We saw blue skies today, and gray clouds yesterday.  We have walked in the rain, and we have bent over waves of shells, bags whipping in the wind as we choose our most favorite ones to take home.  I am drawn to shells with worm holes in them.  Some day I will make jewelry with these shells.  In fact, today, our last full day, I did go through my shells and pick out some to make necklaces to wear as we leave this place that holds our hearts.  I strung glass and wooden beads on earthy colored hemp line with shells at the heart of the necklace.  Necklaces I have worn over a life lived by the gulf.

Bug rode his red Harley over from Lamont to spend the day and night before heading back this morning to check on the animals.  It rained while he was here.  We walked on the beach in the rain.  We sat on a bench on the beach watching the rain and the gulf and sand.  Gray, rain, storm and the Gulf.  Simply beautiful and one of my favorite ways to spend time on the beach.  This is October, not August.  This is fall.  The weather can be angrier as we transition from summer to winter. 

A summer of travelling.  Thousands of miles, more then two thirds of the states in this beautiful country.  So diverse, so beautiful.  So much to see and enjoy.  Wild flowers in Arizona, desert in the Mojave, Rocky Mountains, the northern plains, the grasslands, the Pacific ocean, the Gulf of Mexico.  Friends and family.  It was just the most wonderful and very best adventure I have ever taken.  And those of you who know me, know I have had some pretty wonderful adventures.  And so has Bug.  Maybe that is why it felt so "easy".  It is natural for us to travel.  To plan and plot routes.  To look for places to stay when we make a goal.  How to make the miles, without pushing yourself too hard.  To stop and enjoy the journey.  To go to the Grand Canyon, Yosemite National Park, Santa Fe, Flagstaff, San Francisco and the redwoods. 

To dream a dream and then share it with someone.  To share it with someone who loves to travel, who you enjoy spending time with.  To learn about each other and places you go.  To share seeing things so that both get to see things important to each.  And to get to share them together.  We have been home for a week now.  Most of that time I have been at the beach, not our little place in the woods.  But I am home, I am back in Florida and on the Gulf.  But I long to be back in Jefferson County with Bug and the animals, the kids.  My gardens and our life there.  My friends with the Stage Company and the Garden Circle.  The precious people at the Art League.  Back to Monticello.  But I need to put our last trip here on this blog.  So that I can go back and relive parts of the adventure.  To remember things previously missed or forgotten.  So when I get home tomorrow and get settled back at home in my lovely little world.  I will start posting a few photos and to try and remember as much of our adventure as I can.

What a wonderful summer filled with spending time with sweet precious friends and family.  But I miss my friends and family back home.  I look forward to sharing this fall and holiday season with them.  I have missed them, and I am coming home.