Saturday

Update



I haven’t been keeping up with my cancer updates.  Sometimes I try to live as if I don’t have cancer by not thinking about it, or writing, or taking my medicine like I’m supposed to. 

I know I wrote that my cancer has spread to my liver.  Spreading to my liver seemed to make the doctor panic a little.  He put me on Ibrance and Faslodex?  Ibrance is a 125mg pill.  Faslodex is the 2 shots in the hip thing.  They are what I call “horse shots” because the needles are huge though I’ve never seen them - but I have felt them.  I saw them through Chuck’s eyes.  The first time I was going to get the shots I looked at him and he looked horrified.  I decided when I saw "that look" on his face I wasn't going to look.  I told him that and he said you don't want to see them because the needles are huge.

The first time I got the shots they hit a nerve in my left leg and I was in a great deal of pain for 2 days.  I pretty much stayed in bed because my pain pills did nothing to help.  The next time I got them - I’m not sure what happened but my right hip hurt for a month.  Thankfully, it wasn’t like the pain from the first shot but I was super sore and I couldn’t touch my hip or sit certain ways.  

The other issue with the Ibrance was my white blood cell count got really low and I got neutropenia, or low baby white blood cell count.  That meant I could get sick really easily - and I did.  I got so sick it was horrible.  I’ve never been that sick.  I lost my lunch every ½ hour starting at 8:30 at night until 4:30 a.m.  I thought I was feeling a little better and decided to try taking a shower in the afternoon and got sick in the shower.  Chuck called the oncologist’s office and they gave me a prescription for an anti nausea pill.  I was able to get one down and felt a little better.  The next day I had a doctor’s appointment and apparently I scared the lady I saw.  She wanted me to get an MRI of my brain because of the migraine I had.  I think I scared her because I looked so bad.  I had lost about 10 lbs too.  I don’t think I’ve looked that sick since I was diagnosed with cancer. 

Getting so sick made me want to go off all the new medications.  I told her this and I told her I wanted to stay off until my white count went back to normal and I no longer felt sick.  I also told her I wanted to go off the shots because of all the extra pain from them.  She said - before I had a chance - you want “quality of life.”  Quality of Life was my original Oncologist's goal for me.  That is my goal.  I didn’t realize how forceful I must have come across because when I went back 2 weeks later she took me off the new shots completely and put me on a pill instead.  I just wonder why they couldn’t have done that in the first place.  She also wanted me back on Ibrance and said she would lower it to 100mg.  I asked if she would please lower it to 75mg and see what happens with that.  She agreed but said she wanted to ask Dr. Reynolds and make sure he was on board with it.  She came back and told me he was ok with it.  I was supposed to start taking it Monday before Christmas.   I told Chuck I wasn’t going to start it until until after Christmas. Chuck asked if I wanted to go to St. Augustine to see the Christmas lights - so I'm putting off starting the medicines until the day after New Years.  I wanted a break through the holidays.  

After getting so sick I’ve gotten nauseous once a week and had to take the anti nausea medication.  When I feel like that and take the meds I also have to go to bed.  I don’t seem to be able to do anything else.  Since I haven’t been taking the new medication I can’t blame that.  I wonder if it’s because the cancer’s spread to my liver.  I guess that could make me nauseous and super tired.  

That's my update for now.  I don't know how long I'll be on these new medications if I have issues with them again.  You just don't understand "quality of life" until you feel bad and stay sick all the time.






Thursday

December 1, 2016

Thursday, wow, I lost 3 days.  At least I feel like I lost them.  
Sunday night Jesse came over to watch The Walking Dead with us but before it came on - I apologized and said I was going to take a nap.  About 5 minutes after I lay down I jumped up to “lose my dinner”.  I stayed in bed the rest of the night only to jump up to “lose my dinner” about every ½ hour until 4:30 in the morning.  I have never felt so sick.  I was finally able to get up and try to take a shower, which I “lost my dinner” in yet again, around 1:00pm Monday afternoon. I didn’t even finish rinsing off.  I just got out of the shower and went back to bed. I do not know where all of that was coming from.  There definitely should not have been anything left in me.  I couldn’t keep medication down or anything - so I was in a boat-load of pain.  Thankfully, that was the last of the “loosing” at least from that end.   Chuck called the Oncologist and they wanted me to go to the emergency room but I refused.  Have you ever been so sick you just could not go anywhere?  Thank you, no.  I knew I had an appointment Tuesday and decided I would wait until then.
I pretty much stayed in bed until I had to get ready for my doctor appointment on Tuesday.  I told the nurse practitioner that I wanted to go off all the new medications until my white count came back up to normal and I felt better.  She said, “quality of life” and that we’d try it for 2 weeks and see what happens.   
I wanted to go off the new meds because I thought it was totally responsible for all the “dinner losing”.  Unfortunately, last night we found out it was something contagious because Chuck covered the bathroom (and I mean covered it) with his “dinner”.  He’s not good at aiming with that stuff.   He was just able to finally get up about an hour ago.  This has been a rough few days.
I did have a couple of nice things happen during all this that made me feel like God was saying, “It’s going to be ok.”  Jesse came yesterday and cleaned the kitchen and organized all my storage ware for me before we found out Chuck was sick. Once we realized he was sick I told her to go home before she caught it.  The other nice things that happened were my friend Karen brought me a huge cactus plant that reminds me of out west - that’s awesome.  And, my friend Debbie brought me a beautiful prayer shawl, hand made,  in some of my favorite colors, and a gift card.  It is such a huge blessing when friends surprise me and make me feel very loved!  So some awesome things still happened during some of the not so fun days! Even though I’m still not feeling all that great it did make my day!  Even though I've been so sick I feel very blessed this day and I truly appreciate everyone who is  kind to me and makes me feel loved.  I hope God blesses all of you!  Thank you so very much!

Sunday

Mt. Dora art and craft fair

We got up super early to try to go to the Mt. Dora festival.  
It's my favorite - but the most ridiculously crowded art/craft show
of the year.  The last time we tried to go, a couple of years ago, we
just turned around and came back home.  There wasn't anywhere to
park and it was more crowded than Disney on their worst day.  Not
my idea of fun.  Today we got there a few minutes after they opened
and it wasn't too bad plus the weather was the nicest it's been in a very
long time.  We also saw things we hadn't seen at other shows.  
I always like new ideas!  And did I say how much I like Mt. Dora?
It's one of my favorite places in Florida. It seems more like North Carolina
than Florida.  There are actually hills, and old trains, and architecture - 
 an older style that I like, buildings and homes.






 I can't believe this purple building is ok with 
the zoning or building department of Mt. Dora.
It's so very PURPLE.

 I like the entrance to this house.

 and the front porch of this style

  

These guys were in our front yard.


Thursday

Rainbows and chickens

Perfect rainbow today
 Oviedo chicken at the library
 I think he was in love with his reflection

On the way home from the library I saw a pink
rainbow.  I've never seen only pink.






 I like rainy, rainbow days

Sunday

I wanted to blog more but...


I was going to start a new blog
using wordpress HERE
but it's so complicated I don't know if I'll ever
get around to getting it completely ready to go.
In the meantime, I'm going to continue using this one
until I get the other one up and running.  I got behind on
blogging and writing because I thought it would be easy
to get the other site going.  I decided I need to
continue writing and blogging so I'll just continue
here.  If I ever get the other site finished I'll let you know.

Anyway, on my Dad's birthday we decided to meet at 
his grave and set off a Chinese lantern in his memory. 


Doing this made me feel like we celebrated
Dad and that we miss him, and love him, and will
always remember him. I think it was good for all of us.





Jesse and Stuart got the job of trying to set the lantern off. 

 I was afraid to try because we let one go near our house
last year and it caught fire but kept going up and then down.
We held our breath as we watched it.  It seemed like it was going to land 
on someone's roof and catch fire to their house.  We watched till it disappeared and we think it just burned up and probably nothing was left of it.
Warning: Never let them go around trees, or homes, or in windy conditions. 
 Thankfully, this time it was successful and slowly 
rose until it disappeared almost in the clouds.


The sunset was beautiful over the lake at the cemetery.


Mom, Stuart, and Trish in the background

Jesse brought Finn.



 Skip to August which is birthday month around here.
We had a big celebration for Jesse's 30th!
 and Mom's
 and Chuck's Mom, Patsy


Jobee enjoyed the celebration chasing lizards.

 Jason got to come home for Jesse's birthday and will be here 'till tomorrow! Yay!

Chuck's sister Heidi with her new grand baby. He's a cutie!
Lindsey and her boyfriend and his nephew all 
came and joined the party.  I wish I'd gotten a 
photo with all of them in it.  They got here when
I'd reached my really tired point and kind of quit 
with the camera.  Next time I will make sure to
get better photos of everyone!  It's a goal!
I'll set up a photo background and do group shots, yes that's
what I will do from now on!

Patsy with her great grand son and Lindsey in the background
I'm really upset I didn't get a family photo with her in it.


Stuart took some of the photos.


 
Patsy and Mom opening gifts.

Patsy, Heidi and Frank

Jason and Minion - face off!

 Jobee was about as happy as Jesse to wear the Princess crown


You can see the new cabinet colors in this photo which 
took 2 months to complete working on weekends with
Chuck.  I don't think I put pictures of them on here before.

Jason's getting as bad as Jesse hiding from cameras.

Stuart and his favorite car

Me - our newer car

I think Jason's worn out and probably needs a vacation
from his vacation.
I feel really behind in my writing and blogging lately.
This is a start and will have to do until I have more time.
I hope everyone had a happy birthday!


Monday

Dad's birthday


Today is Dad's birthday.  He would have
been 83.  It seems like a long time
ago that he died and then it seems like 
yesterday.  Strange feeling.  I miss you,
Dad.  We all do.  You were a great Dad and
we love you very much!!!!  I am grateful
for the time we had with you here and look
forward to the rest of eternity with you in heaven.
You are loved and you are missed!!