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.

Friday, July 31, 2015

I passed a wrecked snow plow. . .

Sometimes I think of things that happened a while back.  Way back.  This was in the early 1960's while I was in college.  Times were different then, we trusted people. We felt safer, maybe because the news was not so much about great scary things.  I think the only people who scared me were the Russians.  Can you say missiles in Cuba?

For the younger readers, this is all before cell phones and few people had credit cards.  My stepfather's dad died.  Mother and Papa Jack dropped one of their cars off for me to drive to the funeral later that week.  I forgot to cash a check for gas, food, emergencies.  My roommate had cash and put it out on our dresser for me.  I got up early to get on the road. 

As I started driving, it began to snow.  This is pre interstate highways in Kentucky.  I am on a mostly 2 lane mountain road.  Sometimes there was a third lane to pass trucks on hills.  The snow got worse, and I was skidding into the other lane.  Not good.  Then as the road went up the hill to Livingston, a little town on the Rockcastle River, I was really slipping and sliding.  I saw a truck with a snow blade hanging over my lane and partly in a ditch.  Great, the snow plow can't make it, how can I?  Well, after a lot of crying, cursing and praying I got to the truck stop at the top. 

The parking lot was full of trucks and the restaurant was packed with truckers.  They told me the road south was worse and not to attempt the trip to Corbin.  I asked for a phone, opened my purse and no money.  Wallet left on the dresser. The owners let me make the call anyway. A crying little blonde girl goes a long way in the South.  I called Mother to tell her I couldn't get there. I told her I had no money and that I was scared to drive down the river side of the road back to college.

Two truckers were listening and said they would either load my car on their flat bed or one would drive me back to school. One of them talked to Mother, gave his background, name, maybe even his social security number.  They bought me breakfast and then figured out how to get me off that mountain.

The parking lot was too crowded and slanted to load my car, so one drove me.  Today that is asking for major trouble: axe murderers, rapist, kidnappers.  I guess I was lucky.   We followed the truck and he broke a path in the snow for my car.  I was safely delivered back to school and the two truckers drove off. 

I have had friends and family who are truckers.  They are just people like the rest of us, some nice some not so nice.  I lucked out and had very nice. 

Monday, July 27, 2015

Update on the updates

I saw the oncologist this morning.  She thinks I am doing great!  Usually people on this type of chemo have more side effects by now, especially big trouble with neuropathy.  I have very little numbness in my fingers.  Hope this continues.

August 25 she has scheduled a CT Scan for comparison.  Then we will decide our next move.

Sunday, July 26, 2015

And the rest of my week went better

My last blog post I shared my shopping trip and my near collapse.  I have recovered from doing too much, and had a pretty good week.

The rest of the week, I didn't do much, watched idiot TV, read a little and played various games of solitaire.   I also cooked with Marty, did dishes, and walked 30 minutes every day. I didn't walk today, church takes a lot of energy.  I have the 30 + minute drive, the service, and today we were checking out the demo for our sanctuary remodel.  A lot of standing and walking, I had a little ankle swelling which always scares me a little.  After legs up in the recliner, the swelling went down.

All in all, I am OK.  I don't hurt, not real nauseated, no trips to the ER.

Tomorrow I have my monthly appointment with my oncologist.  I will tell her about the trouble shopping.  Also I will let her know my recovery was fairly quick.  There probably isn't much she can do about me ignoring warning signs from my body. I will be more careful and maybe ask for a wheelchair when I go shopping.  Maybe I have reached a point where I can't do shopping without help. 

We will see.  Tuesday after chemo, Kirsten is taking shopping for shoes.  Keep your fingers crossed. 





Monday, July 20, 2015

Shopping could be hazardous to my health

Today friend Kirsten took me shopping for some clothes for the Kentucky trip in August.  The plan was to go to Macy's ( I had lots of coupons, a gift card and they had a huge sale), next to The Nordstrom Rack for shoes, and then go to lunch.  My knee was still was acting up, but I was managing to walk fairly well.

Kirsten ran all over the store pulling outfits for me to try on. I was always about 20 feet behind her.  She knows me well and picked some neat things.  Then I tried them on and picked what I wanted to keep.  Trying on clothes takes a lot of energy.  I loved what we had found, paid for them and then we were off to the hat department.  My hats are really winter hats.  I need a lighter weight.

Well, the escalator and the elevator were out of order.  We had walked to hell and gone to get to the elevator and I was pooped.  Mother Hen, Kirsten cornered a clerk and explained the Disability Act to her.  The clerk took us through the back of the store and took us down on the freight elevator.  Then we walked twice as far to get out on the sales' floor.  I was wearing down fast.  Kirsten parked me in front of a mirror and brought me hats to try on.  I was getting light headed and nauseated.

We paid and headed to the door.  I was really having trouble, I was scared and pretty sure I was going to pass out.  Kirsten leaned me against the handicapped door and went for the car. I hung on to the wall until she pulled up.  She poured me into her car and took me home.  No lunch out. 

I haven't felt that shaky since an A-Fib attack in December.  But I wasn't in A-fib. I had just over done it.  Way too much walking that I had thought I could do.  I have rested, napped, and pretty much done nothing all afternoon.

A hard shopping trip.  But worth it, I look great in the outfits and new hats,  I will listen to my body sooner next shopping trip.  Yes, Kirsten another shopping trip.  We never got to the Rack.

Saturday, July 18, 2015

And this is how my week went

Monday I had lab work as usual.  All tests were in an acceptable range, so Tuesday I had chemo.  Good friend Pat took me to give Marty time for normal stuff.  Pat and I had a good visit as I was given my chemo.  No side effects that first day.  That night I did a load of laundry, with Marty's help.  Surprise, surprise, I slept Tuesday night.  I rarely sleep the night of chemo.

Wednesday I was doing well enough I did another load of laundry.  I did my 30 minute walk.  I cleaned the bathroom, and then I was done for the day.  I crawled into the recliner, put on idiot TV and rested.  I was slightly nauseated and took one of my magic pills.

Thursday Pat and I planned to go to lunch.  I was nauseated, tired, and not sure if I should go or not.  Then I figured if at home I will still be nauseated even with the magic pill.  I have to eat to hold my weight at a healthy level, so why not let someone else cook lunch and clean up.  And Pat makes me laugh.  That always out weighs sitting home alone. 

We also discovered a wonderful dress shop.  Most of what I liked was waaaay too expensive. I fell in love with an really expensive outfit but controlled myself.  I told the shop owner if I bought it I would have to be buried in it.  And that I already had a Mother of the Groom dress to be buried in.  What Pat liked would not work on her 6' 3" body.  So we just looked and enjoyed the beauty of the outfits.

Friday a friend from Kentucky took Marty and me to brunch.  I was still nauseated and tired, but toughed it out in order to visit with a long time friend.

 
Marty, John Kim, and me
 
Today is Saturday and I am being incredibly brave.  Marty and friend Mark are on their way  to Yosemite for two days.  I was invited, but no way I can hike up to the falls anymore, or walk trails.  Just the drive would have been tiring.  So I am home alone.  This is the first time since they found my cancer that I haven't had someone with me over night.  Marty is just a little worried about me health wise.  I am more worried being alone, I have always been afraid of being alone at night.  And that is why we have a burglar alarm. 
 
Oh, just to make my life even more fun, yesterday my knee started hurting and was not supporting me all the time.   I can't trust it and need to hold furniture, walls, banisters as I walk.  My question is, how can you go to bed and nothing is wrong but when you get up, the knee screams gotcha?  Not a lot of  pain, just uncomfortable walking.  Don't worry about me, this is a recurring thing and I just needed to bitch about it. 

Saturday, July 11, 2015

This week's health update

Because of traveling and swollen legs I didn't have chemo for two weeks. Tuesday I was back in the chemo cycle.  And chemo kicked my butt this week.  I am not anyways as sick as last winter.  But I had issues that slowed me down.

I never sleep well the night before chemo, just nerves.  I know it doesn't hurt, but I get anxious.  That was one night of broken sleep. Tuesday night the chemo didn't just break my sleep, it did away with it.  This is a minor side effect ( minor except when it happens to me) sleep pattern messed up.  So about 2 hours sleep.  I planned to nap most of Wednesday, that didn't work.  It didn't matter how tired I was, I couldn't go to sleep.  I did sleep Wednesday night. 

I was really tired all week.  Thursday I slept most of the day and early evening.  Friday I napped several times.  Today I am perkier.

Along with the sleep issues and tiredness, I have been nauseated.  No throwing up, just at the point  my mother used to say, "five minutes before vomiting".  I took my pills and they sort of helped.  I had two days I didn't really eat anything.  I was so nauseated I couldn't even eat chocolate!  That was a first.  I made myself eat yesterday, I can't get gaunt again.

There is some good news.  When I finished the second round of  antibiotics, my legs were still swollen.  My doctor put me on a diuretic.  She felt the skin was stretched and holding fluid.  Within in four days I had ankles again.  The diuretic is now to be taken as needed.

I am not real sick, just not as good as I have been.  We will see how this next Tuesday works. 

Sunday, July 5, 2015

I am doing well, so more travel

You may wonder if I am so sick, how can I travel.  I wonder too.  I think it is a combination of things.  Most importantly, Prayer Warriors are keeping me strong.  Other factors a gentler chemo. While in the hospital in December, we decided to go for quality of life.  I now have fewer side effects and I am stronger because now I can exercise and keep food down.  I am doing some traveling, but I must factor in rest time, legs swelling, and crankiness. 

Thursday I wrote about our great train trip to San Diego.  Today's post is a day trip all about trains.  Prepare to be over whelmed by too many pictures of not scenery, but of TRAINS!  We rode Amtrak to Sacramento to tour the Train Museum.  Did you know I love trains?

I only have one picture taken while we rode the train. 

 
 
On the train bridge crossing the Suisun Bay looking at the car bridge.  The dot on the horizon is the Moth Ball Fleet.
 
 
 
The museum is all about trains on the West Coast.  The transcontinental railroad was mainly funded by California business men.  Very rich business men.
 
 
This shows the building of snow sheds.  They protect the rails from being blocked by heavy snow.
 
 
A train from the mid 19th century
 

Another early train
 


Wood was burned to provide the steam on early trains.
 
  
Isn't this wheel great?
 
 
Sleeping cars were different from what we had last week. 
 

 
Ceilings were higher, and notice this is a double bed as was the upper berth.  Not a skinny single.
 
 

 
The Dining Car was where the real elegance was.  At least until about around the 1960's.
 
 
 

 
Two pictures of the kitchen
 
 
Just one example of the real china used in the recent past.
 
 
The Mail Car was a moving Post Office
 
 
Just to show you how huge these trains were.  Friend Mark and Marty . . . look at the wheel behind them.  Mark is well over 6 feet tall.
 
 
Love this Virginia City and Truckee train.  Look at the armed guards.  This line carried silver from the mines in Nevada and gold from California.
 
 
This train is gorgeous.  Look at all the colors, and that headlight.
 


Final train, a monster train.  These big ones are not like the trains Marty and I grew up with.  The monsters were for the West.  They had to cross the Rockies and the Sierras.  That took big honking engines.  Todays engines are not as big because of technology.  They also are not as dramatic.
 
 
July no more trips are planned.  I have to work in chemo sometime. And the chemo is what makes it possible to make these trips.


Thursday, July 2, 2015

Train trip to and from San Diego

Marty and I just returned from our Amtrak trip to San Diego.  I love love trains. While I am able I wanted to visit friends and go by train.  I have way too many pictures and did edit some.  Did I tell you I love love trains. 

Because I must wear a mask around people and I tire easily, Marty booked us a roomette.  That way the mask could come off and I could get in the upper berth to rest.  It was a great fun trip.  Now on to the pictures.


We used our phones a lot.  No Wi-Fi except in the Parlor car, so Marty set up a hot spot with his phone.  When not looking at the beautiful scenery, I read a book on my Ipad.  We also napped.
 

 
California has lots of oil fields.  One area was many acres of pumping oil rigs, not the picture above.  This is in Kern County. 
 

View from the top berth.

 
Nap time
 
video

A foggy day on the Pacific coast line.
 
 
The coast line through a dirty window.
 
 
When we arrived in LA, all first class passengers were driven to a private lounge to wait for our next train.  Then we were picked up and taken to our loading area.  The lounge had soft drinks, tea, coffee, water, and snacks.  It was a beautiful room, lots of wood, comfortable chairs, and TV.
 
 
Business Class on the commuter train to San Diego.  Snacks, drinks, reclining seats with foot rests. 
 
 
Our friends wonderful gorgeous home.  It is good to visit here.
 

Turning around from above picture, the view.  We are looking toward Mexico.  There was a major storm front coming in from Mexico, and it was hazy.

 
And we are back on the commuter train headed home.  What did we do before we had cell phones?  Oh right, we read books and talked.
 
 
My side of the roomette.
 
 
Marty's side, he picked it because the plug to charge phones was on that side.
 
 
 Gorgeous view

 
 Winding around horseshoe curves

 
Marty and me in the Dining Car.  We had a great trip. Talked to interesting people, ate good food, and just enjoyed the ride.  Love train trips.