Monday, August 31, 2015

Health Update

We got back from Louisville on Wednesday, August 19.  I was fine on Thursday, still pumped  up from all the goings on in Louisville.  I crashed on Friday, and slept most of that day and Saturday.  Sunday  I was still very tired, but almost back to my normal level.

Monday I had lab work and also saw a different oncologist.  My oncologist had a family emergency and was off this week.  The new doctor was nice, and explained some things we had never thought to ask.  I have chemo brain and Marty gets overwhelmed sometimes with all we are told. 

The doctor told me when I was diagnosed with cancer the tumor marker ( a blood test that checks the protein the tumor puts out ) was over 1000.  You want low numbers.  He said the one a few weeks ago was only a little over 100.  Very impressive he thought.  Again we were reminded this is only a clue to how I am doing.  He showed us the graph on the tests and it looks like a nose dive from October to August.  Very very happy on this one. 

Tuesday I had chemo.  It went well, no surprises with vitals going crazy.  There has been light nausea, but controlled by meds.  I also have been tired all week and having trouble sleeping.  So am I tired from the chemo, or from not sleeping?  Am I not sleeping because of the chemo?  We will never know.  As I say, I have no endings. 

Sunday was a big day.  The longish drive to church.  The church service, then we had a church lunch to kick off the new year in the educational program.  I was tired.  But we weren't done yet.  Marty had a quick meeting with his committee on the renovations.  I said I would rest in the car.  Well, that didn't work out.

One of our members, another Janet, brings an older member, Annabelle, to church each Sunday.  Janet was in Marty's meeting and her teenage son was keeping Annabelle company.  They were talking about TV, the early years.  I hung out with them and we talked about me seeing jet planes as a child and it being a huge deal.  Annabelle talked about going to the airport just to watch planes taking off or landing.  I said I took my first graders on a field trip to the airport.  It was a big deal.  We discussed other things we old people remember. I told him how big the first cell phones were.  I am sure Janet's son was convinced we were older than God.

Today was lab work again.  Tuesday chemo if the all was OK. 

I have felt pretty good this past week.  As I said I have been tired with some nausea.  But I have been able to cook, and wash dishes.  I have walked my 30 minutes everyday.  I am not terribly active but I am not sitting back and giving up.  Tuesday I will begin my 12th month since the diagnosis of pancreatic cancer.  I have made it this long because of prayer warriors, wonderful Kaiser care, Marty, Erik, family, church family, and my incredible friends.  I plan to stick around much longer.




Saturday, August 29, 2015

Colonel Sanders

Colonel Sanders name came up during my time in Louisville.  Some of us were talking about how disgusting the new ads for KFC are.  I said they were an insult to his memory.  I don't think my great nieces and nephew knew till then that Colonel Sanders had been a family friend.  So I told a couple of stories.  My niece, Lisa Kay, asked me to write about Colonel Sanders so I am.

This link  and this one for the Colonel are pretty good, not surprisingly KFC's link is tacky.  So I left it off.  Some of the history I knew, much I did not.  I knew he wasn't a military colonel but a Kentucky Colonel, an honor in our state.  In fact Marty and I are both Kentucky Colonels as are others in my family.

The Colonel I knew was Daddy's friend. And after Daddy's death, the Colonel and his wife, Claudia, remained friends with Mother. our family, and Papa Jack. The Colonel went to our church in Corbin, the First Christian Church.  I don't remember much about him and church work just seeing him there.  But I do remember one church story he told at our kitchen table.

Now the Colonel was known for his shall we say colorful language.  There was an international convention in Australia for the Christian Church, in the 1950's 0r 60's. Colonel Sanders went to it with some Kentucky ministers.  It was winter in Australia and the hotel's heat was not working.  Minsters called the front desk begging for heat for a couple of days, nothing happened  Then Colonel Sanders took over.  He walked up to the front desk and yelled,  I am not one of those soft spoken mealy mouth fu*#+ng preachers.  Fix the fu*#+ng heat.  And they did.

Our family had a tradition around our Christmas tablecloth.  Who ever was with us during the holiday season signed their name on the cloth with pen or pencil.  Later the names would be embroidered.  Over the years as cloths filled up with names another one would be brought out.  Colonel Sanders signed our cloths several years.  But my favorite was the year the cloth was on a pine kitchen table.  Pine is soft wood.  After the cloth was taken off, his signature was pressed into the wood.  Best autograph ever.  The sad thing is no one knows where those tablecloths are now.

Colonel Sanders was proud of his chicken and demanded the franchises meet his standards.  He traveled the country and did spot checks on stores.  He told us one night about tasting gravy and chicken that was shall we say awful.  He picked up the pots, walked out the back door, and threw everything in the garbage.  That was not the only time he did that.  His name was on the product, it better meet his standards.

Colonel Sanders' restaurant was a nice place to eat.  They had lots more than chicken, steaks, pork chops, scallops, shrimp.  Parties were held there, you went there after Sunday church for lunch, it was a special place.  Everything was well cooked and it had good service.  My Sweet Sixteen Party was held there.  I don't remember what we ate, but I felt pretty special having the party there.

And yes he dressed all in white, he looked like the Southern gentleman.  He was good to his friends, gave to charities, and rough as a cob as we say in the South. 

One story I always heard, but not from him was about his daughter.  The story goes that when she married he gave her the state of Florida's franchise.  I do know Florida was not part of the KFC deal, so it may be true.

As I said he was a family friend, close enough that he was invited to the weddings of my sister, me, and my brother.  He gave my sister and me silver tea services, and my brother a covered silver casserole.  I am pretty sure he went to my sister's wedding.  He was out of town when I married.  And he didn't make it to my brother's weddings.  But he would have had a good reason to miss the wedding.   Little Brother and Ann married in the middle of a snow storm. 

So Lisa Kay I hope this gives you some information about Corbin and the Colonel. 



Wednesday, August 26, 2015

Mary Turpin Edwards, our Grandmother

I say our because I had to share her with my sister, brother, and sometimes with cousins.  My family lived in Corbin the same town as Grandmother did.  Today for some reason I was thinking about her and want to share.  She was an amazing woman for her times.

Grandmother was born on a farm in the Bluegrass part of Kentucky in 1890.  Her father was a fairly prosperous farmer and had tenant farmers as workers.  She told me one time she wasn't allowed to wear shoes to school until after a killing frost.  That was because the tenant farmers' didn't buy shoes for their children until winter.  Grandmother said she would run through the pastures and walk where the cattle had slept the night before, the land was warmer there.

Grandmother was an excellent horsewoman and she had her own buggy.  Once her buggy caught on the train rails and tipped over.  The men around the area pulled the damaged buggy off the tracks.  One of the men was going to take her home, because she was a "frail" woman.  Not my Grandmother.  She pulled her horse out of the traces, jumped on him bareback and rode home. 

She met my grandfather in school.  He was her teacher and at least 10 years older.  He waited for her to grow up and they married when she was 22. During her growing up period, he went to medical school at the University of Louisville.  He took a practice in Corbin and they moved from the Bluegrass to the Mountains of Kentucky.  There were no roads in part of the way and they drove on the railroad track to cross rivers and creeks.  I don't know if this was by car or horse and wagon.

Grandmother graduated from high school and then became self taught.  She was well versed in many areas.  She wanted to go to college but that didn't happen.  But she was learning until she died.

One of the greatest gifts my grandmother gave me was a love of books.  She read to us everyday. Not just fairy tales sometimes grown up books.  Every year she placed a huge order with a bookstore in Louisville for that year's supply of  books..  They were Christmas gifts, birthday gifts, and some were saved for when we were sick.  Then books came out to occupy the sick cranky child.  I was the bad child who so loved getting those books that I held the thermometer against the light bulb.  I would have recovered but I wanted more of those wonderful books.  I was smart enough to only go to 100, more than that and they would know I was faking and send me back to school.

She believed if we could read it, then it was okay for us to have.  She knew we would ask questions about parts that were difficult.  That caused a problem in the library.  Our library had a children's side and an adult's side.  You could only check out maybe two books at a time.   I would devour the books and walk to the library every two or three days.  I eventually ran out of books on my side.  So I went to the adult side.  NO children allowed.  Go back to the other side.  I told Grandmother and she walked to the library and explained I loved to read.  And if the books were not fit for an advanced child to read, it should not be in the library.  I got to check out anything I wanted after that.

Grandmother was a lady raised in the Victorian era.  If she walked to the grocery, bank, drug store, where ever, she wore a hat and white gloves.  We were taught proper lady/gentlmen rules. We were taken to church every time the doors opened.   We could set a formal table, walk with a book on our head, only crossed our ankles (away from home the knees were crossed much sexier)  how to get in and out of a car, how to walk in our first pair of heels (if you wobbled you could not wear them out of the house) and much more.

This lovely woman basically raised me, my sister, and my brother.  My father was ill from the time I was 5 and died when I was 10.  Mother was busy with his care the early years.  After his death she was in and out of our lives.  Grandmother was always there.

We were lucky to have her the short time we had.  She died when I was 17.  She is still missed and loved. 

Monday, August 24, 2015

Flying

As you all know I hate flying.  I flew a few times and felt I would die if I didn't get off the damn plane.  I reached a point I didn't even like Marty or Erik to fly.  And then I said no more planes.  When CHEVRON transfers us, it better be on Amtrak.

For ten years I rode Amtrak or drove to our new city.  If we had a convention in Las Vegas, Reno, Tahoe, we drove.  Then Marty's mother died and I couldn't make myself get on a plane and go to the funeral.  I was a failure at supporting my husband at one of the worst times of his life. 

I knew I had to do something and went into group counseling for people with phobias.  They told us they couldn't cure us, but would teach us how to live with our fears.  Then came the big test.

CHEVRON had a convention not on Amtrak or drivable.  It was in Hawaii.  I had to fly over the ocean.  And I did it with good drugs.  Of course the whole time we were there I worried about flying back home.  I found out later there were all kinds of bets down on whether I would get on the plane or not.  The people betting I would fly made good money.

So since then I have flown on a need to basis.  Still hate it.  The trips this summer were not as awful.  I balanced cancer/plane crash.  One or the other was going to get me.  I might as well hope cancer and go see friends and family.

Now I am sure there are folks out there who still doubt I flew.  They might think we drove or went on Amtrak.  So a little proof of my flying is below.

 

 
Coming into Chicago over Lake Michigan
 
 
 
Over Chicago
 
So yes I really did fly.  A little valium, a little calming music, some prayers, and strong hand holding by Marty.   



Thursday, August 20, 2015

CT Scan

For readers who don't do Facebook:   Today at 2:30 had my regular CT Scan.   I figured I would get no results until at least Friday afternoon.  I was nervous about results and hated to wait for results.  Well, as we got home after Kaiser and an errand my phone rang.

The doctor's office called with results.  The freaking tumor is stable!!!!   Chemo is doing its job and not killing me at the same time.  Marty and I think other good helpful factors are chocolate, Bourbon, and Butter Cream icing.  What do you think?

Monday, August 17, 2015

This was great for me, probably will bore all of you

Friday night we went out eat in Indiana,  just across the Ohio River from Louisville.

 
Not a bad view of Louisville 


Saturday we had a wonderful day.  We gathered friends and family from all walks of our life.  No we couldn't have everyone we wanted.  But we did get most of our family together. I have pictures of my family.  Marty hasn't shared his pictures of  his family yet.  So maybe later I can get those posted.

I as always have lots and lots of pictures.  I am going to put up way more than you'll want to see.  But this post is for me.  This is for me to remember that special day.  Feel free to skip through it.

 
 
The party has begun.  Marty, nephew A.J., me, and Holly.  This was the room with the champagne punch and the ginger ale punch.  Guess which one I drank.
 
 
Dining room table with some of our "light" hors d'oeuvres
 
 
Ann ordered a chocolate cake with butter cream icing.  I cut the first piece, a corner piece. This icing was wonderful, rich and gooey.
 
 
Little Brother and his pal Louie
 
 
No Belinda and I are not sitting down.  Kiel is my tallest nephew, 7 foot.   He just signed a contract to play pro basketball.  Belinda was excited to meet him.  She had had college classes with his father, who also played pro ball. 
 
 
Friends Marty grew up with.  Left to right, me, Ronald, Beverly, Billy, Marty
 
 
Friends I grew up with.  Left to right, Joyce, Wanda, me, Peggy.  Joyce and Wanda drove several hours to come visit me. Peggy lived within an hour or so from Louisville.  They are part of my Corbin Prayer Warriors. 
 
Below are several pictures of my side of the family.  We had nieces, nephews, spouses, great nephews, great nieces, Papa Jack and Yolanda, partners, and Friend Mark.  Did I forget anyone?  Oh Marty was there too.  Love my crazy loud family.
 





 
We laughed, told tall tales of family happenings. We told tales of my late sister, Maryann. Story were told that were new to some of the family.  Like one person had eloped and her children didn't know that.  It was such a wonderful day. 
 
Sunday we were again doing a family tradition.  Church and then out to breakfast at The Big Boy.  After breakfast we had to take pictures, lots of pictures.  And where did we take them?  In front of the Boy of course.
 
This should have been a video.  Getting this group together was like herding cats. 
 
 


 
This is all without me.
 
 
One of the waitresses came out and took a picture of all of us with me. 
 
The last few days have been a huge love fest for me to them, and them to me.  I do love these wonderful crazy fun people.  Hope you got through most of the pictures.  You can see how happy we all are.  
 
If I can get Marty and Mark to send me the pictures they took, I will post them and bore you all some more. Two more days and we go home.  Then we will be back to health updates.  Not as much fun but just as important.  Much love to all my friends, family, and Prayer Warriors.




Friday, August 14, 2015

Chemo, flight, all kinds of stuff

Tuesday morning I took chemo.  All went well, and I felt pretty good.  That night at 9:15 we left for the airport to take a red eye to Louisville.  Now to get from check in to the gate was a mess.

Friend Mark noticed during the day, United did not have Marty and me on their list, even though we were pre checked in.  He straightened that out, we thought and checked our luggage.  Marty was still not on the list.  With a lot of help, he was found and added to the flight.  We walk to security, as a precheck in we get the short line, don't have to take off shoes and stuff, or pull out our computers.  Well, Marty was not on the pre check in list.  So he was sent away to the looong line.  Mark and I breezed through and sat down to wait for Marty.

Since we were done showing ID I was going to put mine back in my wallet.  It was gone!  I had my tickets, I had the need a wheelchair card, no ID.  Mark goes looking for it after I had dumped my purse twice looking for it.  Nope, he couldn't find it.  I was having a sh*t fit.  I see a TSA guy walking around and asked if he had found an ID.  He asked my name, and handed it to me.  He had found it on the floor by the moving belt thingy.  Great relief.

We finally get on the plane, I take my valium and sort of doze after we take off.  All is nice and dark and quiet on the plane.  Then the attendants come down the aisle hawking their wares at 1:30 AM.  Really?  Any way I did fine on both flights and we arrived in Louisville safe and sound, and on time. Thank you Prayer Warriors.

Then we kept a family tradition. 

 
WHITE CASTLE!!!!!   We met Hank, Ann,  Papa Jack, and Yolanda and ate well. We always go straight from the airport to the Eastern Parkway White Castle.  Then we go to my brother's.
 
 
We are having a great visit.  Last night we walked up to a lovely neighborhood restaurant, Buck's.  My family has eaten there for years.  Wonderful place.  We were in the back room so that we wouldn't annoy others. 
 
 
Papa Jack and Yolanda ( Mama Yo)
 
 
Little Brother and Ann.  Hank just had eye surgery so he is still a little puffy.
 
 
Hank, Papa Jack, and Ann
 
 
Left to right
Papa Jack, Yolanda, Me, Ann behind me, Hank, Marty, Mark.   And the wonderful food ready for us to eat.  Of course we took this into the sun, so not a great picture.
 
 
Today Marty and Mark are off to Mammoth Cave and the Bourbon Trail.  Ann and I have pulled out bowls and plates for tomorrow's party.  We both love to make lists and mark things off.  So I made a list of all food and then we put sticky notes on each plate/bowl to show what would be in/on it. Then we marked it off.  Tomorrow we will mark off as food is put out.  Love marking off what we are doing.  It feels so hard working. 
 
We are having a great time, and look forward to the rest of our time here.  I will post more through the week.  For my worry wart friends, yes I am resting and listening to my body.  





Sunday, August 9, 2015

No chemo this week

Monday I  had lab work.  I always get the results almost before we get home.  I check the platelets because if they are low, no chemo.  The other tests, and there a lot of them, I don't understand or don't think they are a huge factor in whether I take chemo.  Well that afternoon the nurse called me and said no chemo this week.  My white blood cells are too low.  I do know that one.  In the past they have given me shots to improve the white cells and talked about blood transfusions.  So this became an off week.

We are to leave Tuesday for Louisville and I was afraid they would want me to stay home.  Would they change my August schedule? Would I have to do chemo on my planned off week? The trip was planned around my off week and when Mark (our giver of frequent flyer miles) could take vacation with us.  I still get my off week.  Tuesday I will have chemo if all is well, and we take a redeye that night. 

When I asked the nurse if this would mess up our planned vacation, she said, "again a trip?"  ( yes this will be our third trip this summer:  Dallas, San Diego, and now Louisville)  I told her I have a limited time I will be able to travel and I have family and friends to visit. 

The rest of the week I did normal things.  I cooked more than usual and when I didn't cook I did the dishes.  I walked 30  minutes every day.  Wednesday afternoon Erik, our son, came to visit and to help out with domestic duties.  I had broken beans the day before and put them on to cook and fixed a chuck roast in the crock pot.  We all agreed it was a fabulous meal.  Nothing better than fresh green beans cooked low and slow, with just a little bacon grease and other Southern secret ingredients.

Friday I went to brunch with Kirsten and later Pat joined us at my home.  We had a gab fest and caught up on what each was doing. I am so lucky to have these ladies in my life.  

I have lots of friends that check on me, visit me, Facebook me, call me.  Another dear friend, Janet R (so you know it isn't me, they call me Janet A) texts or emails me nearly every day.  Janet R checks what is going on, how am I doing, am I happy, do I need anything.  We ask Janet R to join us, but since she owns a business, she can't get away often.  So we don't see her much. 

Today, Sunday, I went to church.  That is a big deal.  It is a 35-40 minute drive.  I have to be up and dressed earlier than usual.  Meds must be taken early. And there is the emotion of the love I feel from my church family.  When we get in the car to drive home I am pretty well whipped.  But it is worth being tired. 

So normal is good.  I felt good most of the week, not as tired, and very little nausea.  I am not sleeping very well, but I blame the bed hog I live with.  I love Marty so much, but this week he has royally ticked me off.  He is sleeping on a diagonal, that would be with his head on MY PILLOW.  He also stole the prop my arm up pillow.  He took all the covers, and then complained how hot he was during the night. My complaining about him is an indicator I am feeling better.  For some reason when I feel better I feel justified in being ticked at the best caregiver ever.

Keep your fingers crossed that I can take chemo on Tuesday.  I get scared when chemo is put off.  I am afraid the tumor will get ahead of us.  So never ever do I want to miss a session. 

Tuesday, August 4, 2015

Why can't my brain remember?

Chemo brain is real.  I can't remember squat. Sticky notes are my best friend. Words come out of my mouth that just don't make sense.  Or I can't pronounce words correctly.  I can't track more than one thing at a time and reflexes are slow, thus no driving.  But all of the above is not the worse problem.  My hair is the problem.

Well my lack of hair.  I used to have such good hair.  It was curly, thick, and silver.  I never was grey, hell no, Divas do not go grey.  We have silver hair, thank you very much.

 
 
When I got up in the morning, I fluffed my hair. When I washed my hair I only had to fluff it.  No need to dry it.  It was curly, a good cut, and easy.  The wind blew, no problem, run my fingers through my hair and all was well.

As you all know, I now don't have a hair on my body.  Well maybe 4 where I should have eyebrows.  I haven't had head hair for months.  My brain can not remember that.  When I take off my hat I reach up to fluff  my hair.  Marty finds that hysterical.  Every morning as I get up I reach to fluff out my flat hair.  In the shower I reach for the shampoo.  Why o why can't my brain remember, NO hair?


Sunday, August 2, 2015

More ups than downs in the health report

Some of this is a repeat of little updates, so hang in there.  There is some new stuff.

Monday I had lab work and saw the oncologist.  She says I am doing really well.  She is surprised I am having so few side effects, especially neuropathy.  Most patients on my type of chemo have a big problem.   I posted on Facebook, bragged how well I am doing.  And I  really noted the low side effects.  Well, that came back to bite me.

Monday night and Tuesday morning I had great nausea and intestinal issues. Most of the night I was gagging and nothing happening. (I have a cast iron stomach and rarely vomit.)  Early morning there was vomiting.  Damn bragging always gets you.  I was afraid with the vomiting they wouldn't let me have chemo Tuesday.  They just upped the anti nausea meds and I did fine.  I was so good I went to lunch and then shoe shopping.  I did use a wheelchair this time while shopping.  I sat and Kirsten and Pat found shoes and pushed me around the store.  When I got home I took a three hour nap.

Wednesday Pat and friend Rose Anne came to visit and we went to lunch.  I am becoming a social butterfly.  It is great to be able to go out for "normal" things.  And great to have friends who will take me. 

Wednesday I received an email from my oncologist with the results of the tumor marker blood test they did Tuesday.  This test gives info about the size of the tumor.  The numbers are lower which means the tumor is not spreading.  Marty and I celebrated by opening a bottle of champagne.  And we emptied it. 

Friday I looked at the apartment and thought I can not stand the dust any longer.  I have been called Tidy Tilly and used to clean a lot. (yes I am checking out the housecleaning for chemo patients) I dusted the whole apartment, baseboards, fancy banister, pictures, door tops, art glass.  I was busy.  I looked at the vacuum cleaner and thought nah that is too hard.   Another nap was in order.

Weekends are for resting.  Even the little I do during the week is tiring.  I need to just do nothing some days, so I do.

There is still some nausea, but not bad.  Sometimes I take a pill, sometimes not.  The neuropathy is still manageable.  Mainly tingling in my finger tips.  The feet have been weird for several years, not a lot of feeling, so no change there.  Over all I am doing great. 

In little over a week we fly to Kentucky to see family and friends. As most of you know I hate hate flying.  So keep me in your prayers for calmness and that the valium works.