Things Just Got REAL!!!

This is Marty and I am taking orders as usual. J Taking dictation.

Since I came home  from the hospital a week ago I just got weaker and weaker.  Noodle legs kept me from walking and my recliner became my best friend.  It’s a good thing it is electric so I could get in and out of it.  Marty had fun giving me a ride to each room of our apartment in the wheelchair.

Thanks to my friends Janet, Kirsten, Lourdes, Sue and Vallery for coming to sit with me while Marty could do some of his work.  I also had our Elders from church, Lonnie and Roy bring communion and a visit from my minister Russ.

This past Saturday my blood pressure was 70 over 60 and I was too light headed to do anything so it was back to the ER in the early afternoon.  They started hydrating me and giving me antibiotics.  Got moved to my new suite at the hospital later in the day.  From the CT scan the week before my Oncologist confirmed this damn cancer had spread to my liver.  It’s been a week of crying, bitching and trying to be brave.  It’s easier to be positive because I am using less energy.  

Even though I am weak I am stronger than when I came in and can walk short distances.  I am getting better each day and hoping to go home soon.  Every day they come up with a new test that I have never heard of.  I am getting tired of being probed, prodded, poked, stuck and bled.  I know all of this helps in my treatment but it can be annoying.

My brother Henry and his wife Ann flew here from Kentucky Monday to be with us for Thanksgiving.  We may have turkey day in the hospital.  They have been great support to both of us.

Marty and I have to make a lot of major decisions in the time I have left and I am asking my prayer warriors to continue praying that Marty and I can get through this new time in our life together.

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Yesterday at Kaiser

First off blood work would not allow chemo this week.  I feel fine, just tired some days.  The post below was very hard to write and will be hard for some to read.  Feel free to skip it.  It was written more for me than anyone else. 

Marty and I were asked to be interviewed in a new program at San Leandro Kaiser.  It is called the Lunchtime series.  The series is for Kaiser staff: social workers, nurses, doctors, techs,  dieticians, chaplains,  most anyone who interacts with patients.  The purpose is to help staff understand the emotional side of a deadly diagnosis and what more they need to do once we leave the hospital, ER. office visit, whatever. We were interviewed for an hour for the interviewers to learn about us.  Then yesterday was the real show.

I was really dreading this.  They had asked us to talk about some hard stuff, like death, what had we lost from the illness, and what had we gained.  Could I do this without breaking down, could I stand to watch Marty talk about what it had done to him?  This was going to be emotionally draining.  We wanted to do it if it would help one person see what goes on when the patient is home. 

Being the vain creature I am, I obsessed about what to wear.  Staff would be in "medical" uniforms, so I shouldn't be fancy.  This is California everything is pretty casual.  At the same time I was being interviewed and should not be real causal. Being a Southern Belle I was taught to dress for the occasion, and never go out of the house looking "like something the cat drug in".  I try to live up to the Southern standards. 

Marty wasn't home and I wanted to send this a picture of the outfit to some friends and family.  So I took the dreaded in the mirror selfie.  Tacky, but it worked.  Everything was built around the hat and glasses.  As I posted on Facebook, I think I look pretty kick ass.  

We get to the conference room and it looks nice.  Since it is lunchtime there was food for the audience, and us if we wanted it.  We didn't want to be eating and talking at the same time.  So we ate earlier.  

Getting ready to start.  I was a little nervous.  What if chemo brain struck and I couldn't make a complete sentence?  

We began with my family history, both sides, of cancer.  My father, mother, grandmother, sister, brother, aunts, uncles, cousins, niece all had cancer.  Some made it some didn't.  We talked about how in the 40's and even up into the late 60's you didn't talk about having cancer.  It might be catching, it made you different, there was almost a shame to having cancer.  It was all very secretive.  Except in our family.  

We talked about it.  As a 5 year old I knew how sick my father was.  We discussed Grandmother's treatment.  And Ernestine's, and Mother's,and the lady's down the street.  Talking helps to grwo a scab on the hurt in your heart.

They asked how I handled all the sickness and death growing up.  Well, you only know what you live with, I thought my life was normal.  Other people have doom and destruction in their lives too.  You just keep on keeping on.

There were questions about what I had lost (I didn't mention no hair, but they showed a picture of Marty shaving my head) and what I had gained from having cancer.  I lost a friend, I lost freedom because I can't drive.  I lost my two fabulous volunteers jobs. marrying couples and working with first graders.  I lost a way of life.

I gained an even stronger marriage.  Some spouses can't handle sickness and disappear.  Marty has been incredible.  Our son has really stepped up and helped us.  I gained deeper friendships in many areas of my life.  People have helped us in so many ways.  My Prayer Warriors all over the world, my babysitters, the ladies who drive me everywhere, my phone friend who is 88 and can't drive to me. I have my friends who visit me.  Friends brought meals. I have friends who check on me on Facebook, email,or texting. I have friends who protect us from too much friendship and put the word out don't bother them now, we will let you know when things are better. I do feel the love.

Finally they asked the big question, how do I live with knowing I have a death sentence, how do I keep going on.  I did break down a little then.  I told them we live day to day and we do have a good life.  But I also told them this is not just  my death, it is Marty's too.  It is the death of a marriage, but not of love.  It is the death of a way of life. 

I told them I have a little bit of denial still, this isn't real.  I have hope, cures are found everyday, so I have to still be here when they find one for me.  I told them I do believe in heaven, read my Bible, go to church when able and when the doctors will allow, 

There were a lot more areas covered.  Afterwards was Q n A  from staff.  They were so grateful for us sharing our story.  They came up and hugged us, told how touched they were by our willingness to share.  They also were happy we were pleased with the care I receive from Kaiser. 

This was hard to do and hard to write.  Today is maybe a bit of me venting my emotions.  This wasn't as funny a post I have done.  But trust me I made them laugh, more than once.  And I made some of them cry.

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.

A short update

I haven't updated for a couple of weeks.  Not since the scan fiasco.  There isn't a lot to tell you all.  My chemo sessions are not making me sick as the pre Christmas chemo did.  And that is the great news.

I feel pretty good, slight nausea and very tired.  I take a pill and the nausea goes away.  I am eating well, maybe too well.  Cheetos showed up on my plate this week!  YUMMMY!  The tiredness is helped by scattered naps through the day.  I sometimes almost forget I have cancer.  The tiredness is sort of strange.  I feel weak inside, as if I were boneless, it really is hard to describe the feeling.

One other possible side effect is I am wobbly and dizzy, more so then usual.  This could be from my long standing inner ear problem, heart and blood pressure medicine, the chemo, or all of them. What ever it is, it highly entertains Marty when I walk into a door, bounce off a wall, or grab banisters and furniture in order to stay upright.  He is not entertained when I grab him and nearly pull him down as I start leaning and can't stop. 

I am doing more of the cooking since I am feeling better.  I help with the laundry, I even have been changing the sheets. I admit some things I could do more often, such as dusting and maybe even run the sweeper, but I tell myself I am sick with cancer.  Why should I do things I hate now?  After a couple of days I talk myself into dusting and feel saintly for doing it.

 I feel stronger, but not totally normal.  But I will take it.  Almost normal is great.

A huge amount of pancreatic cancer patients don't make it 6 months after they are diagnosed.  I have passed that 6 months and into my 7th month.  Is it the treatment, was it found earlier than most people's, it is prayers?  I don't know, but I am betting on prayers.

Prayer warriors keep up the good work.

An update on me

This past week was a rest week between rounds of chemo.  Tuesday, if platelets are high enough I begin another 3 week round.  Although that may change a little after the talk we had with the oncologist Friday.

The oncologist said if she had seen me out and about, she wouldn't have dreamed I was a cancer patient.  My color is good, and I look healthy.  That was good to hear.  We were hoping for another scan to see if any progress, but she said it is too soon from the last one.  Then we talked about the chemo.

The three chemo meds I did before Christmas were just too harsh and hard for my body.  That is why we went with a gentler one in January.  The doctor thinks I have rebounded so well that we should add another gentle chemo.  It doesn't have as awful side effects as the pre Christmas chemo.  I might have some nauseas and more fatigue.  Marty is researching the new one and we will decide in the next week or so if I should take it.

I wrote a week or so ago about the loss of hair except on my upper lip and chin.  Well folks, overnight my eyelashes are coming back and I am growing head hair.  Doing my happy dance.  Of course the new chemo will probably make everything fall out again. 

I am a very vain person as mentioned in other posts.  When my legs swelled from the chemo I was really upset with the old lady no ankles look.  I now have ankles and must say they are damn good looking.  Then there was the hair loss. 

Even when I was bigger than the side of a barn, I felt I always looked good because my hair was gorgeous.  I had the Triplett silver hair.  Daddy had it, Uncle Fessor had it, Aunt Margaret, and Uncle Bill had the silver hair.  Big Boy Cousin Ernest has gorgeous silver hair.  It is a Triplett blessing.  So I cried when my hair fell out.  My hair was my crown of glory.

Here I am with pancreatic cancer that they can do little about, and I worry about ankles and hair.  Doesn't make sense does it?  Last night I dreamed all my hair came back nice and thick, but it wasn't Triplett hair, it was Mother's side of the family: Edwards' mousey grey hair.  In my dream I cried over the hair color, and had it dyed pink. 

Even in my sleep I am vain.