Final opinion on PET! Happy Dance!!!

Spoke with Oasis of Hope again this morning and all my doctors there conferred and looked at the images from August and from December.  A PET is 3 D and he referred to 3 specific different angles that they studied-
This is very important because my oncologist never actually looks at the images - she relies on the radiologist's report.
He told me that in all the images the SUV - or sugar uptake - or cancerous activity-
   was less than in August!!
All the sites that they said were new, were actually on the August scan!!

(Clarification: the radiologist for my oncologist was comparing Dec's scan to the Feb scan, not the Aug scan.  In Sept, I gave the written report to the oncologist, and was not asked to provide the disc)

So I do not really have new lesions -- they were there in August!
Furthermore, the report from August show that there was ascites, which is fluid collecting in the
   abdominal cavity, which has cancerous cells in it, and there is none on the December report!!!
Woohoo!!!

These Docs look at the information in a different way than Western medicine does!  I wish more people knew that there were other ways of attacking health problems!
Sorry - I'll quit preaching'! LOL

They want me to continue the xeloda because my collection of protocols appears to be working! The cancerous activity is being depressed!  They said to continue to add in very, very slowly the protocols as they suggested, removing any that cause gastric distress.

Praise God for this good report!  I am so thankful for Oasis of Hope and their observations -- Vastly different than my oncologist!

"Call upon my in the day of trouble --
    I will deliver you and you will honor me!"
    Ps 50:15

I am so thankful that God has granted me this good news!  A miracle from Him!

True confessions - this helps so much to calm the fretting, because the area under my right lower rib cage is progressively more uncomfortable.  I cannot sleep on my right side and when I laugh, cough, sneeze or just breath wrong, there is a sharp twinge.  This of course brings memories of last Christmas with the pain escalating....Fear is powerful...  

I need to simply keep my eyes focused on God and not on the pain --
    to rejoice in the gift of each day
    to be thankful in all things...
    and of course keep my mouth shut when it comes to
       Christmas cookies, candy, cheese and sausage - shrimp, stollen, crackers and wine....
       oh so very difficult!!!
Perhaps the pain in the ribs is really a blessing from God to help me in this!!!

If only "simply" were really that simple!  It is an exercise in focus that I must work on every hour-- sometimes every 5 minutes!   But anything worth having is worth effort and this is growing my reliance on God's strength, cause I can't resist all these yummy things without his help!!

Thank you so much for continuing to check in on me in this very busy season -- I am humbled and teary eyed when we see how many people have checked in!  Thank you for your love and prayers!  It boggles my mind that y'all keep loving and caring!  Truly, y'all are a gift from God!  May he bless you richly this Christmas~

Thanks for checkin' in!

PET Scan Results ...

PET went smoothly - very peaceful - no claustrophobia or panics - dozed through part of it --
  Thanks for the prayers that brought such peace! 
  It is disheartening to have them bring out the injection in a heavy leaden box and have the 
  syringe be inside of a metal jacket and see the "caution-biohazard" signs all over it!  Yuck!

During the scan, it dawned on me that I could get my records prior to my oncology appointment today.  After weighing everything,  I did go pick them up and take them to my integrative Dr. and overnighted them to my Oasis of Hope doctors.  Our fabulous postal service still had not gotten the disc delivered as of today at 4:45 when it was to be there at noon on Friday!  Unbelievable!  

Because of this ineptitude, I am still waiting to hear a final opinion from Oasis -- and they are the only Doc's that have my February, August and December PET scans. 
However 
Here is what what my integrative doc said -
 -- there are some new lesions - that's bad
 -- the old tumor from 1 year ago had glowed at 8.+ in Jan and now is at 3.+ - that's good!
    especially in view of how sick I was all Summer and into October!  
Bottom Line - "You are in a war.  You have taken shelling, but you have pushed back the enemy"  "Your body is responding well in some places and not so much in others, but there are signs that something is working." 

Oasis of Hope said the same thing based on the written report, which we e-mailed.  I will have a phone consultation tomorrow after they look at the images and compare them all.  
  
I am profoundly thankful for these men because I would have been really discouraged by my oncologist comments otherwise.  
Here is what my oncologist said (no she does not look at the scans - she goes completely off the radiological report) 
--the cancer has progressed - you have new lesions
-- the low dose chemo is not working
--you need to start folfiri to keep this in check
--I'm trying to buy you time with your family and friends
--there is better quality of life with chemo than without.....

When I asked her about the decrease in the glowing from 8 to 3, she did not have an answer - she said she did not have that information - which I read in the report when I picked it up.....

As she spoke, I could feel my positive attitude being sucked out of me and feel the sadness creeping up. The thought that came to me is Proverbs 18:21 that talks about life and death are in the power of the tongue.  I walked out feeling like I would be dead in 6 mos, with no energy to fight and wanting to scream -- which is completely different than how I felt when talking to my other doctors, even tho their news was not great.  

How many people, myself included last time, are given this negative spin by their well-meaning oncologists and have these negative words play over and over in their heads?  How does that contribute at all to the healing process?  
Yes it is good to know where you stand, but I was given a charm of a bumble bee by a friend.  The explanation that came with it goes like this:
"According to the laws of aerodynamics the bumble bee cannot fly; It's body is too heavy for its wings and that the simple reason why.  
But
the bumble bee does not know this fact, and so it flies anyway for all to see.
Remember this when you're losing faith or hope God's proof that the impossible can be."
This was written by A.S. Waldrop.

The mind is so powerful....I would much rather fly than die! 

Thank you so much for your love and prayers.  This has been a really trying time and we so appreciate you thinking of us at this busy time of year.  

PET scan Tues, 13th at 2:30 PST -

Side effects are not fun - tingly hands, feet -poor fine motor skills :(
but very thankful for:
   Feeling good
   Weight holding  
   Energy holding

Praying that tomorrow's scan shows that the cancer shrunk! 
Praying that I am not fearful!

No results until the 20th when I have an appointment with the oncologist -- unless they call me to come in earlier....praying that does not happen!

Thank you for the many, many prayers!  I feel like a living miracle - maybe tomorrow will prove that I am one!  

https://youtu.be/PAmh3yvmzXs
 
        Thy will be done Lord!

Feel like a Miracle

Pet scheduled for 12/13 at 2:30 - prayers appreciated that nothing lights up - Thank you!
Feeling good - energy a little more steady
Weight holding - actually cut out the shakes cause I don't need the calories  
Bloodwork good
Side effects are not fun!
Eating clean (organic) animal protein about 14 meals a week - 
   doing some gluten cause it does not seem to make a huge difference
Still craving sugar - but probably will my whole life!
Having lots of cinnamon to combat the sugar
Having curcumin and pepper to enhance the chemo
Trying to get back into a walking routine - rough after being a couch potato for so long!  
Struggling with being off my ADD meds and time management - oh so hard!

2 weeks ago, a friend told me to thank God for my healing.  I have been pondering this, since I am still able to feel the tumor in my belly, and I don't want to be pollyanna and get my hopes up too high.   Her point was to be positive and thank God for what he has already done.  As I thought about that, it really hit me how far I have come in terms of how I feel.  I was blessed to be able to attend the Lancer Ladies Brunch and bring guests to both Christmas at the Nechita performances over the weekend.  Today I am pooped - but not completely wiped out!  One person yesterday said I had a bounce in my step!
It was wonderful to get to see so many people that I have not seen in a long time.  Had some extra special hugs from some of the students, as well as some great conversation...
Several recurring themes were people praying for me, glad to see me and that I look great :) Praying I look as great on the PET as people say!

In thinking back to 10/5 when I had no strength to get out of bed, and friends helped with laundry and cleaning and I was considering canceling my trip, or going in a wheelchair, it is shocking how different I am now. 
Yes, I believe in miracles - and I feel like a miracle -- 
Praying that next Tues will provide proof of my miracle.....

The other recurring theme is the extreme pain that is all around us---
There are so many heartbreakings stories or situations that need lots of prayers - a young girl with an inoperable brain tumor -- a long awaited kidney transplant to be successful- and the family of the donor!-- more friends with cancer - friends who have gone to heaven after battles with cancer-- a spouse of 30+ years walking out- widows and widowers who never get over the loss of their love.  

Please open your hearts to those around you...be aware of the pain in their lives.  While in line returning something early one morning, I noticed a woman at another check out station and I could see by the way she stood (arms crossed tightly), how she spoke (sharply), the set of her mouth and the hardness of her eyes that she had some hardship going on in her life. Praying silently for her and the poor clerk dealing with her, I wished everyone in the vicinity a merry Christmas and smiled at her.  She probably thought I was nuts- but oh well! 
We are so attached to our phones and our busyness, that we do not notice people.  You have the ability to make someone's journey lighter by noticing their pain/sadness/rough day and being kind.  Isn't that what we are supposed to do - be like Jesus?  Eye contact, smiling or opening a door for someone who has their hands full makes a difference!! Lets dispel the notion that Christians are just a bunch of judgmental hypocrites and smile, be kind and help people!! If we all did this - what a difference it would make!  

Thank you for your prayers - I am sure they are why I am doing so well!  There is proof for that - when I was on chemo last time - I weathered it better than any of my Doc's other patients...

Thanks for checkin in! Y'all are a blessing!

Thankful...

For all the birthday greetings - thank you for thinking of me! 
For your ongoing prayers 
That I was strong enough to go to a conference with Todd before thanksgiving and visit with some friends
     Went to several receptions and stood for hours talking to people --
     2 months ago, I could barely stand 15 minutes!
For organic turkey and a fairly "normal" thanksgiving dinner 
     (really missed the mashed potatos and the pumpkin pie needs working on!)
That tho I am having side effects from the low dose chemo, my gut is ok
For the challenges of side effects - they make me appreciate what I can do!
That this year will be better than last year --
That my weight is holding
For rain! Love the rain! It was wonderful!
For cool temperatures - winter in SoCal!
For the anticipation of family coming
For a fireplace when the heat goes out 
For a quick and easy fix to the heat problem and the technician to do it!
For a good book to lose myself in
For the administrators at my doctors offices helping me to sort out insurance snafus
For the customer service reps at my insurance company helping me with willing attitudes, 
    and advocating for me, above and beyond what they had to do
For the quiet peace of Advent
For the energy to do some organizing
For my oncologist agreeing to a PET scan in December!
  Praying the scan shows the cancer dwindling down!

Many people wrote much about being thankful over the weekend-- 
The one that jumped out at me the most was something to the effect of -- 
What if God took away the things that you forgot to thank Him for?  
Waking up? Seeing? Breathing? Joints that work? Your close relationships? Your special gifts that make you? Balance to not fall over or run into things and be able to carry things? Coordination to be able to open a bottle, clasp a necklace or bracelet - to walk and drive? A soft pillow in a warm house? Clean water? A friend to play a game with or call? The comfort of a favorite bible verse or hymn?  The sweet smell of the air after rain? The peace of rain on the roof? The beauty of a blossom? The comfort of a sheltering hug?

From Col 2:6-8 So then....continue to live your lives in him.....overflowing with thankfulness.

Thankfulness leads you into "praying without ceasing" and into praising him - the sure antidote to sadness/depression/fear.  Hopefully you can carry the thankful spirit into this crazy hectic Advent/Christmas season.  It will help you to keep the main thing, the main thing! It will also help you to not become overwhelmed.  (I'm preaching myself a sermon here too! I know this is easier said than done - but the effort takes you in a better direction!)

Thanks for checkin' in - Thankful for each of you!  

Decisions, Decisions

After much prayerful thought, we decided to not to the kidney test (cystogram) 

Stent removed Monday

We also decided to wait and see what the scan shows before doing anything about my hernia.

Starting to get side effects from the low dose chemo :( tingly clumsy hands - foggy thinking - tired

Energy is ok but sporadic

Weight holding

Self discipline is marginal regarding doing the protocols

Added in my second supplement from Oasis of Hope yesterday - definitely does not agree with me! 

Blessings -

Oncologist ordered second round of low dose chemo so insurance buys! (bought first round from Oasis of Hope)

Airline refunded ticket from flight home this Summer

Got a credit from the insurance company for my chiropractor visits - 

Able to get out more (hard to not over do it) but it keeps me from being depressed

Many people praying for me - thank you so much!

Encouraging cards - notes

Beautiful weather

Fun theater date with Todd to see a dance troupe

Finding new foods I can eat that do not require hours of chopping etc.

A new year 

I have not written much because we are in a kind of plateau stage.  Nothing is really happening - 

trying to get some domestic things done - not very successfully

trying to keep up with protocols - not very well

trying not to be crabby about my food

trying not to dwell on the Christmas cookies and yummy food we usually have that I should not have

     It's all very trying - hahaha

It's just a continuing, waiting time - waiting til my scan to see what is happening inside. 

We are praying that the low dose chemo is killing all the cancer cells, and that it will not have the effect of making the cancer stem cells more aggressive.  

The base drug in the low dose chemo I am on has been shown to do in the past.  

(What I am on now, xeloda, has 5Fu as the base drug   

which is the basis of what I was on in 2011, Folfox and 

the basis of the full strength chemo my oncologist wants to put me on now, Folfiri)

This has helped a lot! Hope it blesses you!

https://youtu.be/f8TkUMJtK5k

A friend gave me a beautiful quote from Corrie Ten Boom - 

"When we are powerless to do a thing, it is a great joy that we can come and step inside the ability of Jesus."

I am so thankful for this...

Thankful for you and all the prayers you send up for me

Thankful for God's comforting word

Thankful for the many blessings showered on us

Up and down

Not much new to report-

Had one doc apt that went well - My eyes have not changed --LOL!  

     Gotta be thankful about all the little things! 

Dentist said my change in diet caused a change in my mouth - more plaque :( 

     Will get cleaned more often but insurance will not participate :(

     Thankful I have insurance that covers any of it though! 

Began my new antibiotic, and as before, feeling pretty crumby

     This is more like flue than sinus --  body aches, hot/cold and tired

     Should be done with this soon I hope
Had gastric upheaval with the switch to the new antibiotic -[now settled down -relatively]

Tolerating full strength chemo and the synergistic supplement fairly well

    This is the first protocol from Oasis of Hope I have been able to add back in!
Weight holding - Energy up and down

Thankful I felt good last weekend when lots was going on and that it's quiet this weekend

Sometimes there is just not a lot to report.  It was a quiet week.  We enjoyed the World Series and the celebrations!! Great fun!  I kinda figure that if the miracle of the Cubs winning the World Series can happen, why could I not be healed?  What's one more miracle for an all powerful God?  I am certainly praying so anyway!  

Along that same vein, I have been fighting fear that I'm not doing more of the protocols that Oasis of Hope laid out.  Though I tell myself/God that I trust Him -- I have to re-say it often!!! even when I don't feel it!  Multiple times a day!  It is so hard to trust and not know!

A great joy this upcoming week - our grand daughter turns 2 years old -- not sure where 2 years went! Thankful for this lively, fun little whirlwind of activity!  She is a distraction and also great medicine!  

After last week's post, I continue to be made aware of so many who have it so much worse than I do....Thank you for taking time out of your busy schedule to pray for me when there are so many others that need it also!!  I am honored!  Each time I hear that someone is praying for me - it makes me cry....Thank you!!

Ps 56 has some nuggets that resonate with me and maybe will bless you as well--
In God, whose word I praise, 
In God I trust; I shall not be afraid (even if I have to say it over & over to feel brave) 
What can man do to me?.....   (actually, it's not man so much as my body failing me)
You have kept count of my tossings; (so many of them - and God counted them? Wow!)
put my tears in your bottle -  (can't grasp the idea of God storing my tears up)
are they not in your book?
......This I know, that God is for me.  (Yes He is - even if I do not see it!)
In God whose word I praise, 
the Lord, whose word I praise 
in God I trust; I shall not be afraid.....
     (Can't help but notice the refrain of praise!  Gotta do that more!)

Thankful for 
Cubs win!
Good doctors
Cooler weather
Our little Sweet Pea's birthday
Many God conversations
Safe travel for loved ones
Knowing that this feeling yucky will end
Energy to walk a little bit
Protection from the devil's attacks
Seeing how the power of prayer really is so powerful
All of you - Thanks for checking in!