Tuesday, May 26, 2015

Amtrak riding buddy.

I am not overly fond of flying.  In fact for years I refused to get on a plane. I did some group therapy and have managed to get on planes either with Valium or Bourbon. I rode Amtrak for a few house buying trips when we were transferred.  Marty and Erik would put me on the train then fly to the destination, and pick me when I rolled in. 

In January 1982 we were transferred back to Louisville KY.  Chicago was as close as I could to get to Louisville by train.  Marty arranged for someone working for him to pick me up and bring me Louisville to buy a house  (the driver was visiting family in Chicago.)  So I did not have to fly.

When we got to the station in Martinez all the passengers were all agog.  Pointing, whispering, asking for autographs.  I looked at the man and I had no idea who he was.  The friend who drove me to the station said it's John Madden.  The link is for those like me at the time who have no idea who he is.  It was patiently explained to me by Ann telling me to look at his ring, a huge Super Bowl ring.  He also was a local radio commentator and did commentary on pro football games.  I rarely do pro sports.  And only when the local teams are in playoffs.  The ring was won before I moved to California.

Marty and I are more about University of Kentucky basketball.  Go CATS!!!

John and I have one thing in common, we do not like to fly.  This was before his fancy bus days.  He rode the train and then had drivers if he couldn't get to his final destination by train. There was also a golf pro (no idea what his name was, a minor pro) who wouldn't fly after he was ditched in a lake while in the military.  And then there was me.

John Madden is a lovely down to earth man.  He got on the train with an entourage and I thought fancy star, will be a pain.  Wrong.  Every time he walked through the cars he spoke to me, if he saw me in the dining car he spoke. In the bar car we had conversations.  We talked about me buying a house, we talked about the scenery. We talked about the golf pro in the lake.  We chatted for 2000 miles.  It didn't matter that I knew nothing about sports.  He can talk about lots of other things.  It was a lovely cross country trip.

I am sure he doesn't remember me, he met lots of people in his train riding days.  But I will never forget meeting him.  He was fun, he was just a guy, he didn't act like a super star, he didn't hog the conversation.  And that attitude makes him a Super Star in my book.

Sunday, May 24, 2015

Weekly health update

Sunday I went to church for the first time since October.  I wore my gloves and mask, and our minister asked people not to touch me, just wave, fake a hug, or bow to me.  It was very emotional for me, and very physically tiring.  We no longer live close to the church, it can be a 30 to 45 minute drive depending on traffic.  We had brunch before we came home.  I was worn out by the time we got home.  I took a 5 hour nap to recover.  I won't be going often, but at least I can go.

Monday I saw my oncologist and she dropped the dreaded words  CT Scan.  Just in case you missed the last one, click here.  I started into panic mode, and then thought I am a big girl, I have to do these regularly, so just do it.  Sometime in the next three weeks I will have it done.  Joy. 

She was pleased with how well I am doing.  I am so much better on this chemo than the one before Christmas.  She is letting me plan further ahead than a couple of days.  We have a trip by plane to go to Dallas and visit Marty's brother.  Then we are going to San Diego on Amtrak to see friends and Marty to watch a Billiards Tournament.  The train trip will be beautiful and not as tiring/stressful as other ways of getting there.

I continue to walk 30 minutes nearly every day.  I cook, dust periodically, change the bed, and other domestic duties.  But this week I was really really  tired.  I slept more during the day than I have recently.  Also my taste buds are going bonkers.  I can eat anything without getting sick, but the food just tastes wrong. ( Before Christmas I couldn't get food down.)  This time I can eat, it just isn't as enjoyable.  Although ice cream and hot fudge still tastes great.

Sometimes I feel as if I am on borrowed time.  Many many pancreatic cancer patients don't make it 6 months after diagnoses.  I am far into my 8th month.  I have the feeling some days of so much to do while I can, other days I think just get through today why bother.  But I don't stay down long.  You gotta be positive, you gotta laugh.

Overall, I am happy, I have no pain, I am not deathly ill as pre Christmas.  I'm doing good, and I thank my prayer warriors. You all are amazing with what you are doing for me.

Tuesday, May 19, 2015

Yes I did, I just played the cancer card

Today was chemo day and per usual the pharmacy did not have my meds ready on time.  They were only an hour late today.  Again Marty went home to work, and came back later for me.

I order my Lovenox (blood thinner) online and then plan to pick it up on chemo day.  Because it is prefilled syringes it can not be mailed. Of course it is never ready and we have to wait, sometimes over an hour.  Sometimes they don't have any and have to order it.  Then we have to come back in a couple of days.  That is why I always order way before I am running low. When we arrive to pick it up, then they tell us sorry.  Hello, let me know before hand.  We have decided I am the only Kaiser patient taking this drug.  Other Kaiser pharmacies never have it in stock either. 

I had ordered online, picked the pharmacy I wanted, and clicked checkout.  We were sure it wouldn't be ready, but went to get it after my chemo infusion.  We check in and guess what, order not filled.  I was pissed off.  Sweet gentle Marty, who never gets real mad, was livid.  The clerk was going to check if they had enough or if they would have to order it. 

She came back and said yes they had enough, but it would take at least 15 minutes to fill.  We have already waited 10 minutes. And the line to pick up is about 30 minutes long.  Been there often enough to know where you don't want to be standing.   It is past 1:30 and I haven't had lunch because of chemo running late. My sister in law says something like, " Never get between a Triplett (maiden name) and food."

I am tired, hungry, and have my I hate Kaiser Pharmacy pants on.  This is not going well.  I tell her this happens ever time we come.  Never ready, why should I bother ordering on line as they ask patients to?  She says she will have them call my name when it is filled and I won't have to stand in the pick up line.  This will only take 15 minutes.  Then I did it.

I looked her in the eye and said, "I just came from chemo and I am fading fast!"  She walked over picked up the Lovenox and let me pay at her window.  I did not lie, I did not exaggerate, and I did not become a screaming crazy woman.

I will save my other cancer cards for other stressful stupid events.  It worked and I know I can't abuse these cards.  But if you've got cancer, you might as well use it to your advantage.  Hmmm wonder if I could score reservations at fancy restaurants?

Saturday, May 16, 2015

I Have Had a Good Week

Sunday for Mother's Day our son took us out for brunch.  He had found a very neat place that I would have just passed by.  As they say don't judge a book by its cover.  We ate at the Handlebar, those of you in the Bay Area might want to try it. We all loved the food. I highly recommend the Bloody Mary's.

As you can see we enjoyed our drinks.  Erik with a Mimosa, Marty and I had the very spicy Bloody Mary's.  Yes we had food too.
                                                            A better picture of us.
After we ate, we went to the Berkeley Marina to take more pictures and to freeze.  It was a cold, windy, gray day.  Really windy as you can tell from Erik's messed hair.

Wednesday I saw my primary care doctor.  This was a follow up from the trip to the ER a couple of weeks ago.  (that was for spiking blood pressure)  After tweaking my meds, my blood pressure is in the normal range again.  He was pleased with how well I am doing.  He had one question on a medicine he wants me to ask my oncologist about.  He doesn't think I need to take it.  I am all for taking fewer pills.

That afternoon was Erik's time to come help us with domestic duties.  He cleaned, did laundry, and moved furniture.  And we had a lovely visit.  He is a huge help to us, physically and emotionally.  Love you Little Boy.

Friday good friend Pat picked me up for breakfast.  Her son ate with us, then he went to an appointment and we went shopping.  Mostly we were looking, and then I found some cute pajamas, so I bought them.

Then we went to another store and I found several purses that needed to come home with me.  Well until I picked them up.  Most of them were too heavy even empty for me to consider.  Then I found a leather (probably not real) hobo bag that was light as a feather.  Soft as a baby's butt.  It also had all kinds of pockets, zippers, compartments, it is great.  As we were headed to pay, I saw it.  The perfect carryon bag.  It has red leather and a leopard design.  It is in your face and only a secure woman could carry this bag.  Lots of pockets:  it will hold my laptop, all my meds, and probably three days of clothing.  I love it.   It came home with me too.

It was great to be strong enough to shop.  I walked for a over an hour and I wasn't exhausted. Tired, but not a huge problem.  It was a lovely time with Pat.  She makes me laugh, gets my black humor, and takes such good care of me.  I had such a good time, thanks Pat.  Friends like that are hard to find. 
It was a very good week.  And tomorrow I will get to go to church for the first time since October.  I have already put out the gloves and mask I will wear.  Yep, knock wood, things are going pretty good.

Sunday, May 10, 2015

Chemo problems and a health update.

Monday I had lab work.  I was emailed the results in a little over an hour.  I didn't think they would give me chemo on Tuesday, the platelet count was not in the normal range.  But they didn't call and cancel me.  They said though low, still in a safe range.

When I checked in Glenda ( Kaiser clerk who is blog worthy ) told me the pharmacy was running an  hour late.  But they would start me on the anti nausea meds, take vitals, and start the saline IV.  That was fine with me.  The anti nausea has to be taken 30 minutes before the chemo, so not an issue.


Two hours and 45 minutes later the chemo meds finally arrived.  The nurses were going crazy.  All the chairs were full, the waiting room had people, they were backed up and nothing the nurses could do.  They would come in my room and see if I wanted to watch TV, did I need something to drink, was I OK.  They kept saying they were so sorry.  I  told them not their fault, but I did want to yell and curse at someone.  I asked if I could curse for them. 

Once I had my two bags of chemo, Marty picked me up and took me to lunch, at 2:30.  I was starving.  And just a little tired.  Who knew sitting for hours could be so tiring.

I haven't had any bad side effects other than being very tired this week.  This week the tiredness didn't ever really get better.  Even today I feel tired.  As I have said chemo is accumulative and this was the last treatment of a three week round.  Next week no chemo, so I will bounce back I am sure.

My appetite is good. Chemo brain is still a problem, I do and say some dumb things.  I am walking nearly every day for 30 minutes.  I cooked most nights this past week, and when I didn't cook I washed up the dishes.  I even changed the sheets all by myself.  So I am doing good.

We are planning a couple of trips this summer.  I was surprised the oncologist OKed them. One of the trips is 2 1/2 months out.  This is huge for me.  I have made few plans over a week out.  I pretty much just try to get through each day and start over the next day.

I plan to talk to the doctor again about to church.  She has let me go to out eat, ride BART, and says I can fly for one of the trips.  It seems strangers are safer than friends.  Strangers don't hug me, touch me, kiss me.  Strangers just are there.  It has been suggested if I go to church that I hang a sign around my neck that says, Do Not Touch. 

Friday, May 8, 2015

Knives at Dawn

Well, maybe it wasn't really dawn, but that makes a good title.  Picture this:  2 young men in pegged jeans that hang off their hip bones.  They both have jack knives in their hands.  A crowd gathers of similarly dressed young men.  They too have knives.  Young girls and children gather to watch the duel. They are all on the edge of the school yard.  The two men start to throw their knives.  Where are the school officials, the police?  Well the 1950's and 1960's were anther time.

This was not a fight, it was a daily game of knives skills.  Back then all young boys/men had pocket knives of various blade lengths.  Some girls had knives.  They were taught how to use a knife, and not to use it on another person.  Teachers didn't freak out over knives in a class room, no big deal.

But what were these young men doing?  They were playing Split, a version of mumbley peg. (I tried to set up some links but Google is bonkers today and nothing will load.) So my knowledge of mumbley peg is it is a old knife throwing game with many versions.  Mark Twain wrote about the game in one of the Tom Sawyer books.  Some versions you had to complete 15 different throws of the knife.  Other versions involved throwing the knifes at targets, often feet,  and some versions they threw while sitting in a circle.

I imagine every town had their own house rules.  I told a friend about mumbley peg and in her home town it was a marble game.  How tame.

Split is a very skilled knife throwing game.  The two people stood facing each other, each of them had their heels and toes touching.  The object was to throw a knife at the outside of the opposite person's foot.  The knife had to stand up when it landed.  You had to hit within a certain distance toward the foot.  If you did, the person had to move his foot out to where the knife hit.  If you weren't in that distance, the other person threw toward you.  This went on until your opponent spread his feet so far apart he couldn't stand, or the knife hit the foot.  In all the years I watched this game, I never saw anyone hurt. 

Can you imagine that game on a school yard today?  There would be reporters, police, and court cases.  This was a very normal game and no one worried about it.  From second grade until I graduated from high school( all on the same campus), I watched them throw knives.  I admired their skills, and never really worried about a body hit.  Kentucky boys are very skilled with knives. 

Wednesday, May 6, 2015

Chemo Brain maybe

Lately if I can't remember something I blame chemo brain.  And that is a true problem.  But sometimes, because I did this before I got sick, I just can't remember things. Prime example this week, the SAFE problem

After we were robbed last year we got permission from the landlord to put in a security system.  We also put in a couple of safes for jewelry, emergency money, checkbooks.  Stuff like that.  Now I did help Marty set up the combination punching buttons when he told me to, but I didn't read the book of instructions.  He was reading it. 

Well, Monday I tried to open my safe and an error code came up.  I kept trying and it locked me out for 15 minutes.  I asked Marty for help, it wouldn't open for him.  So we got the book out. Not a lot of info for our problem.  But I did learn if you punch the wrong code when locking the safe it resets to that code.  It will display the code for 2 seconds so you can see what it has become.  So setting up your code and closing the door have the same operation.  Evidently I had hit a button wrong and changed the code.  So we got the override key.  And it didn't fit my safe, tried the second key, didn't fit.  Crap. 

We worked on this little problem for a full day.  We figured out the keys only fit his safe.  Where were my keys?  The next morning Marty called the manufacturer, gave them the serial number. They told him what forms to fill out and to have notarized, how much money to send,(a lot).  I thought too much money for this, the keys have to be in the apartment somewhere.  So we started looking again. 

Drawers were dumped out, vases upended, shoes boxes checked out.  And then my fuzzy brain cleared and I knew where I had hidden the keys.  I retrieved them, opened my safe and kissed my jewelry hello, and then reset the combination.  In the future I will check the readout on what numbers I punched in to lock it.  I still think it is dumb to have the code to lock also the reset option at the same time. 

Where did I hide the keys?  As you can tell, in a very secure place.  And you ask again where did I hide the keys?  You don't really think I will tell you do you? 

Saturday, May 2, 2015

Adapting to hair loss

Adapting, that seems to be most of what I do now.  I adapted to being diabetic, to A-Fib, to giving myself shots twice a day, chemo brain.  I have learned to pace myself and not over do.  I have adapted to a whole new body (that one is kind of nice, 100 pounds down and wearing cuter clothes.) One biggie to adapt to, no driving.  Chemo brain and drugs that make me dizzy, not good to be behind the wheel.  I have even adapted to asking friends for help.  So you can see, I can adapt to new things.  But this hair loss. . .

I now have to use sun screen all over my head.  My head gets cold. Makeup is required on my head. Then we have the problem of hats.  I always thought I had a huge head, hats always were tight, would not go on sometimes.  It was a problem.  Well guess what, I don't have a big head, I had lots and lots of thick hair.  All that hair was causing the hat problem. 

When I walk outside, which I am now strong/steady enough to do, I wear a big brimmed hat.  That keeps the sun off my face.  The hat sat just right on my head and the crown of the hat was a nice distance above my ears.  Not anymore.  I put that hat on and it falls to my ears, the crown sits on the top of my head.  If I didn't have ears that hat would fall to the bottom of my nose.

As for the makeup, I have figured out how to feather it from my face upon my scalp.  The problem is I am getting makeup all over my pull over shirts.  No hair, so the shirt touches scalp and the makeup.  I forget to hold the neck out going over my head.  Makeup ends up on the collar, on the neckline.  Not a huge problem, but I am not adapting well to dressing myself and not getting makeup all over. 

I am sure I will figure this out.  Just wanted you to know all my problems are  not life threatening health issues. 

Thursday, April 30, 2015

Chemo week and some observations

First off my chemo day went better this week.  No trip to the ER.  The only side effects were being very tired and of course the hair disappearing.  Eyelashes and eyebrows are thinner, my buzz cut is just about all gone and there is just scalp now. 

As I have said often, I am a vain woman. I have said if the house was on fire, I would dress and put on my makeup before I would let the fireman see me.   Vain has some ugly definitions.  The only one I like is concerned about one's own appearance.  I am not too over the top about my appearance, but I have high standards.  I try to look neat and well turned out when leaving the house.  I admit last November and December when I was so sick, I let some things slip. 

I wore looser clothes, slip on shoes, and no make up.  The loose clothes were because Marty was having to dress  me, I was too weak to dress myself.  No make up because that took too much effort.  Slip on shoes because I could just slide them on, no bending over to tie shoes.  But I still looked neat and clean.  I was pale and needed makeup, but that one was just too hard.  Evan though I wasn't a fashion plate, I looked better than many of the people we saw at Kaiser (caregivers not just patients) and even at the grocery store. 

Now that I am feeling so much better I look pretty good even when I go to chemo.  Cute sparkly hat, coordinated top and jeans.  Of course full make up.  I feel better looking "normal".  I have even worn my Kick Ass boots to appointments.  And I wear my leather motorcycle jacket with them.  I really feel great when I wear those boots.  Thank you Little Brother and Ann for taking me shopping for shoes.

Now I am not judging but making an observation here.  Nearly everyone getting chemo looks like they are homeless.  Their clothes are mismatched, stretched out, and sad.  This is men and women.  They look as if they have given up, they don't care anymore.  I know how awful chemo is, I nearly died from the side effects.  I want them to still care about their look.  I want them to feel good about themselves.  I want them to feel loved as I am.

I know I have the greatest caregiver in the world.  Maybe they don't have the support I do.  Maybe their spouse, friends don't think about how they look.  Marty knew I needed warm clothes, looser clothes. he knew I wanted to still look normal.  So he went out and bought sweats that looked like regular slacks and they were in pretty colors.  He bought fun/cute shirts that were warm and easy to get on.  He kept me looking pretty good through those really sick times.  He knew I might be sick enough to die, but I would go out looking good.  Thank you Marty.

And that is what I want for the other patients.  I want them to care, not to give up, to look good and that will make them feel better.  Vanity is not always a bad thing.

Friday, April 24, 2015

And now a word about my health

Monday I saw my oncologist and had lab work done.  The report from the doctor is I am doing well. In fact well enough to plan a train trip this summer.  Marty and I have only looked at getting through each day.  We have made no long range plans.  But there are some things I want to do before the end of this illness.  And a train trip to visit friends in San Diego is one of them.

One of the blood tests was called a tumor marker.  It was to be compared to a base line to see if the tumor was growing, shrinking, or the same.  The doctor says she uses it as a clue, it is not a perfect test.

Tuesday as I was waiting to go into chemo, I got an email from my doctor.  The tumor marker was down.  GREAT news!  I started crying with joy just as the nurse called me in.  I told him why I was crying and he hugged me and held me as we walked to my chemo chair.  Nurses in a chemo infusion clinic need good news too.

Before the chemo starts they take my vitals.  My blood pressure was high.  He took it again and it was higher.  I sat a while, took it again and higher.  Crap, I have been stable since December, what is going on?  After the chemo was done, before I could leave, the blood pressure was taken once again.  Still higher.  My doctor came to the clinic and we discussed what to do.  It was high enough to be border line run her to the ER now.  I decided to go to ER because I was afraid to go home.  After 3 1/2 hours and a change in meds the numbers came down. 

I had my blood pressure checked on Thursday afternoon to see if the meds were helping or hindering.  Too much meds and the blood pressure will plummet.  I was down in the normal range and now only have to make an appointment with my primary care doctor to get his thoughts.

Back to Wednesday, I had my heart echocardiogram.(I think that is the correct term.  It is basically an ultra sound of the heart)    If you remember the awful CT scan, a shadow around my heart looked as if there was fluid there.  Nope, heart normal, nothing to worry about. 

So all in all lots of good news.  I am not having awful side effects, I am walking 30 minutes most days, I am healthy in many ways.  So the prayers are working friends.  Thank you for the love and caring.  I feel you out there.