Oasis of hope is not concerned about bloodwork-they say that my prognosis is still good-
However
Integrative doc said split test results and the increased pain, and tumors growing indicate
that something is growing tho the results are confusing
Blood showed that it is very healthy- Yay!
no toxins, clumping or yeast! All the right shape and dispersion over the field.
That is great news!
Shoulder is still very painful - getting different medication to control the pain
Trying not to dwell on growing tumors
Doc said I was somewhat dehydrated -I feel like all I do is drink water!!! argh-
back to counting ounces!
Will continue vit c infusions to build immune system
Weight holding
Trying to increase Modified Citrus Pectin
to combat new cancer colonies establishing themselves - tastes yucky tho!
Walking pretty faithfully 1-1.5 miles
Back on xeloda -Docs say that is what is making me feel nauseated and so exhausted
Energy was great last week (on xeloda vacation) like my old self-tons of energy-fantastic!
Onset of xeloda is having a negative impact on that :(
Even at low dose, it is still chemo
Praying the benefits outweigh the side effects!
Will try to add in other supplements to counteract having poop that floats
(which indicates that I am not breaking down fats properly)
So how am I really?
Well...... exhausted actually! and a little numb- So much to assimilate
This is the first time I could see so clearly how much the xeloda impacts me! I absolutely pass out when I sleep in the afternoon -- now if I can just get the shoulder pain under control so I can sleep at night that would be great!
Can really tell the difference being on the xeloda - I forget all kinds of things - way more than I usually do! hahaha!
Doc today confirmed that shoulder pain is probably related to growth of tumors in dome of the liver, which presses on diaphragm and gallbladder, which refers pain to shoulders.
One tumor is about 5 cm now and the lower edge of my right rib cage is distorted, indicating that there is probably cancer activity there. I wish it were just old age arthritis or something like that, but probably not. The PET scan which I'll get in a month, will probably show it - though it has to be bigger than 1 cm to show up on a PET.
Dr Contreras at Oasis of Hope said that the goal is not to eradicate the cancers, but to live with them in a peaceful co-existance. I am praying diligently that all these protocols will keep the tumors in check so they do not grow.
Working on Trusting God's plan and not my own -- it is very hard to not dwell on all that I wanted to accomplish in my life...
Am very thankful for the many God appointments, talking faith with people, that He does bless me to have!
Thankful for my docs -
for the instinct to go back to my original integrative doc - it was a blessing
for friends who check in on me showering me with love through cards, texts, gift cards and
even home grown avocados and completely organic free range eggs!! I am so blessed!
for making plans
for having the food taste good 1/2 the time now (instead of rarely)
for the few things that I do get accomplished each day
for a soft bed, warm blankie, clean water and available medicine
My grandfather used to say, in German of course, "It all stands firmly in God's hands."
This is part of strengthening my trust -- focusing on God's plan being better than I could ever script and that He can do immeasurably more than I could ask or even imagine.....
This is like when you pray for patience -- How do you get more patience? by being frustrated and learning to wait....
How do you gain more trust? by dangling by a thread over a precipice and repeatedly having the strength of the thread revealed....It is terrifying....But He is always there!
The Lord himself goes before you and will be with you;
He will never leave you nor forsake you.
Do not be afraid;
Do not be discouraged."
Deut 31:8
So thankful for each of you checking in on me and praying for us! This is a long and rocky road, with brilliant sunshine and deep shadows - You are precious to us!
Thanks for checkin' in - we love you
PS - Christine made the fatal mistake and asked me to edit and post her blog. Therefore I will remind you that "Todd is a stud" :-). T
Thursday, March 30, 2017
Monday, March 27, 2017
Bad news, good news
Got bloodwork back - one tumor marker up, one tumor marker down -
Oncologist fine with bloodwork - waiting for Oasis of Hope to weigh in -
Praying to figure out which integrative docs to involve in this process - one or both
Energy up last week (trying not to get too excited)
Feet better after being off xeloda for 3 days
Weight steady
Details:
Primary care doc is amazing - she e-mailed me results Tuesday night so I could prepare for my oncologist apt Wed afternoon!!! She is such a blessing!
When I saw that one tumor marker doubled (1.6-3.2) I cried and did not retain much of the rest of the numbers.
So thankful for my loving analyst who spent several hours researching the history/trends of the numbers and consolidated 26 pages of history and results into one page(!) with "concerns" on it-- and then e-mailed it off to Oasis of Hope!
I am blessed!
After all that analysis, he felt that my bloodwork was not so bad as I thought :) Yay!
Went into the oncologists appointment assuming that she would use the doubling of the tumor marker to insist on the IV chemo.
Before I even got to see her, an assistant came in with 2 containers of xeloda that had been left by another patient, whom I did not even know(!) with my name on it! God dropped about $3,000.00 worth of medicine into my lap (worth based on what insurance pays for it). We were stunned!
God is able to do immeasurably more than we can ask or imagine! Eph 3:20
I could never have come up with that plan!
When the oncologist came in, she looked at my numbers and said they really were not really bad! (I shut my mouth) As she went to look for the history, Todd asked her a question and she did not really focus on the numbers doubling! She promoted me from every 3 weeks to every 6 weeks and said she would order a PET next time....and away we went!!!
We were so surprised - so fun to see God intervene!!!
So I am staying on the xeloda for at least one more full round - thankful!
Still waiting for comments from Oasis of Hope - The doc said that because some of my numbers were up, he really wanted to convene the docs and discuss my situation and he would get back to me when they had met. I'm guessing we will hear soon - and I am so thankful that several sets of eyes will look at the numbers.
I need to figure out which integrative doc to go back to .... this is weighing heavy on me because they offer different benefits - like comparing an apple and a steak....praying for wisdom on this, as one looks at the quality of my blood, practices like oasis of hope does, and his work provides insight for my cold laser therapist. The other doc is closer, cheaper and has a whole team of docs that look at my stuff and is more "cutting edge". He however, does not look at the quality of my blood.
These decisions are wearing...
Since I wrote this, I made an appointment with the doc that looks at my blood quality....
In the good news realm -- I am so thankful because last week I had good energy! My naps were shorter and I automatically did some household chores that I used to really have to push myself to do, if they got done at all!
Blessed to have a full weekend - Friends in town, theater performance, volunteer banquet - so fun!
However, today I am dragging... not quite as much as I had been - but not as energetic as last week :( Focusing on being short on sleep and praying that I rebound!
Thankful for:
good doctors
my great husband who cheerfully wears whatever hat is the most helpful that hour (chef, analyst, host...)
energy to attend activities
feeling like myself ( a first in almost a year)
the beautiful weather
the steady stream of guests coming to visit
opportunities to talk about God and faith and his provision
faith - that we are not alone in this!
all of you for praying for me and visiting my blog to see how I am doing....
Thanks for checkin' in! You are a blessing!
Monday, March 20, 2017
More of the same --
emotional roller coaster for last 3 weeks - high peaks, dark valleys
finally over flue - but cold still hanging on
slight weight drop due to diuretic to fight ascites - not worried about it
stopped wearing the hernia belt to see if that helped with discomfort - it did
stopped laetril for 5 days to see if gut was better -
somewhat better, but hesitate to quite such powerful anti cancer drug
resuming it today...
trying smaller portions to see if that helps discomfort
not walking as much because
hand and foot syndrome acting up :(
napping regularly- sleeping hard
So how am I really???
Sometimes when you don't hear from me, it is because life is rough, but other times it is for happy reasons, like that we are traveling and I am living life and don't have time to write what with maintaining all this silly protocols! When we travel, we don't post much because we don't want to advertise that the house is empty - guessing y'all can understand that!
It's easy to write about the good things that are happening:
- God clearing obstacles
- getting to see Paul, spend great time with Catie and meet her parents
- wedding plans :)
- begin guests of friends and attending the finals at the Grand Paribas Open
- having energy enough to travel and do these things
So thankful!
It's harder to write and be transparent about the hard things in this journey.
There are things that keep me clinging tearfully to God's hand and praying that this nightmare ends in health, not heaven--things like:
- mysterious pains in my gut that come and go -
or that come and don't go
- taking more pain killers again - not a ton, but the trend is there
- realizing that I have not felt really great for 15 months, with the exception of last May
- having underlying pain pretty much all the time - low grade, but annoying and worrisome
and worrying is not what I am to be doing!
- enduring days where the tears are so close to the surface that a kind word will start a
weeping binge
- not being able to accomplish simple things because I am too tired
- realizing that not accomplishing things means more gets dumped on Todd's plate...
(this is really hard for me as he bears so much)
- struggling with self discipline-
- wondering if I will have the energy to do and enjoy events
- tears that well up from nowhere and won't stop---for hours -
- the struggle to stay positive and peaceful
- trying not to wonder if I will see people again (tears again)
you can't help wonder how many more times your going to get to return to someplace
- weariness of fighting this battle
- feet burning from hand and foot syndrome(side effect of xeloda)
- weeping loud and long for what I am missing, and what I may miss
- being sick of thinking about what I can and can't eat
- being sick of the food I have been eating
- going places and missing hot dogs, ice cream, cheesecake, lemonade slushies and junk
food that I loved
- trying to stay thankful that I can still eat!
- feeling guilty for complaining
- realizing a tumor has grown (less ascites, means clearer palpitation on tummy)
- being overwhelmed with the protocols
each new problem that comes up gets a new protocol or pill
- being overwhelmed with decisions/schedules
old integrative doctor / new doctor?
Oasis of Hope / new doctor?
order a small amount of whatever b/c I may quit tolerating it,
or order lots cause it's cheaper that way?
how many appointments can I squeeze in in one day and will they affect each other?
run a test now or in a month?
take a vacation from this pill to fell better but risk cancer's spread?
This is not written to make you feel sorry for me - rather to shed light on what a patient (any kind of patient of a debilitating illness) may be going through so that you can be more understanding and help or pray in concrete ways. I am trying to be a window into a patient's world - hope I am succeeding and you can view those in your circle of influence with more understanding.
Throughout all this, I have never ever doubted that God can heal me in the blink of an eye. The crux of faith has come in the question, "Will he?" That leads to the follow up problem that I wrestle with.
Do I trust enough to surrender to whatever his will is for my life?
That is a tough one. It is easy to say yes until I look at the plans I had -
- like retiring w the love of my life
- attending grandchildren's baptisms, confirmations, games, performances
- visiting friends again and again
- traveling with friends
- continuing to encourage others in their faith
The realization that my plans may not line up with God's plans is a difficult thing to accept - hence the floods of tears!!!
I continue to cling to God as He is the only way I can survive this mess --
Mark 9:24 is a continuing prayer -"help my unbelief!"
with the continuous echo - "I trust you Lord" -- even (or especially) when I am struggling with that.
Thanks for praying for me so faithfully, for being concerned when you don't see a post --
Thanks for walking this rocky road with us! Thanks for the books, notes, cards messages and love that y'all send to us! You bless us over and over with your kinds words and care! Thank you seems so trite - it is from the heart though! Thanks for checkin' in!
finally over flue - but cold still hanging on
slight weight drop due to diuretic to fight ascites - not worried about it
stopped wearing the hernia belt to see if that helped with discomfort - it did
stopped laetril for 5 days to see if gut was better -
somewhat better, but hesitate to quite such powerful anti cancer drug
resuming it today...
trying smaller portions to see if that helps discomfort
not walking as much because
hand and foot syndrome acting up :(
napping regularly- sleeping hard
So how am I really???
Sometimes when you don't hear from me, it is because life is rough, but other times it is for happy reasons, like that we are traveling and I am living life and don't have time to write what with maintaining all this silly protocols! When we travel, we don't post much because we don't want to advertise that the house is empty - guessing y'all can understand that!
It's easy to write about the good things that are happening:
- God clearing obstacles
- getting to see Paul, spend great time with Catie and meet her parents
- wedding plans :)
- begin guests of friends and attending the finals at the Grand Paribas Open
- having energy enough to travel and do these things
So thankful!
It's harder to write and be transparent about the hard things in this journey.
There are things that keep me clinging tearfully to God's hand and praying that this nightmare ends in health, not heaven--things like:
- mysterious pains in my gut that come and go -
or that come and don't go
- taking more pain killers again - not a ton, but the trend is there
- realizing that I have not felt really great for 15 months, with the exception of last May
- having underlying pain pretty much all the time - low grade, but annoying and worrisome
and worrying is not what I am to be doing!
- enduring days where the tears are so close to the surface that a kind word will start a
weeping binge
- not being able to accomplish simple things because I am too tired
- realizing that not accomplishing things means more gets dumped on Todd's plate...
(this is really hard for me as he bears so much)
- struggling with self discipline-
- wondering if I will have the energy to do and enjoy events
- tears that well up from nowhere and won't stop---for hours -
- the struggle to stay positive and peaceful
- trying not to wonder if I will see people again (tears again)
you can't help wonder how many more times your going to get to return to someplace
- weariness of fighting this battle
- feet burning from hand and foot syndrome(side effect of xeloda)
- weeping loud and long for what I am missing, and what I may miss
- being sick of thinking about what I can and can't eat
- being sick of the food I have been eating
- going places and missing hot dogs, ice cream, cheesecake, lemonade slushies and junk
food that I loved
- trying to stay thankful that I can still eat!
- feeling guilty for complaining
- realizing a tumor has grown (less ascites, means clearer palpitation on tummy)
- being overwhelmed with the protocols
each new problem that comes up gets a new protocol or pill
- being overwhelmed with decisions/schedules
old integrative doctor / new doctor?
Oasis of Hope / new doctor?
order a small amount of whatever b/c I may quit tolerating it,
or order lots cause it's cheaper that way?
how many appointments can I squeeze in in one day and will they affect each other?
run a test now or in a month?
take a vacation from this pill to fell better but risk cancer's spread?
This is not written to make you feel sorry for me - rather to shed light on what a patient (any kind of patient of a debilitating illness) may be going through so that you can be more understanding and help or pray in concrete ways. I am trying to be a window into a patient's world - hope I am succeeding and you can view those in your circle of influence with more understanding.
Throughout all this, I have never ever doubted that God can heal me in the blink of an eye. The crux of faith has come in the question, "Will he?" That leads to the follow up problem that I wrestle with.
Do I trust enough to surrender to whatever his will is for my life?
That is a tough one. It is easy to say yes until I look at the plans I had -
- like retiring w the love of my life
- attending grandchildren's baptisms, confirmations, games, performances
- visiting friends again and again
- traveling with friends
- continuing to encourage others in their faith
The realization that my plans may not line up with God's plans is a difficult thing to accept - hence the floods of tears!!!
I continue to cling to God as He is the only way I can survive this mess --
Mark 9:24 is a continuing prayer -"help my unbelief!"
with the continuous echo - "I trust you Lord" -- even (or especially) when I am struggling with that.
Thanks for praying for me so faithfully, for being concerned when you don't see a post --
Thanks for walking this rocky road with us! Thanks for the books, notes, cards messages and love that y'all send to us! You bless us over and over with your kinds words and care! Thank you seems so trite - it is from the heart though! Thanks for checkin' in!
Sunday, March 5, 2017
Humbled again and again!
God did it again - Mexico package arrived already!
So humbled by all the prayer warriors I have met at the conference!
But that is not all the news!!!!
Remember the difficulty in getting the medicine from Mexico - how he assured me there was the probability that it would get caught at customs for days, up to 2 mos?
It arrived Friday!!! I ordered it Monday night!!!
That has to be God - it is NOT a coincidence - He is ordering the details for me!
So thankful!
Flew to Texas for the ALSS conference with Todd (Association of Lutheran Secondary Schools) and got a wicked bad cold/flue thing. Went to bed and stayed there for a day and a half- and still not better!
Thankful for:
A beautiful view to look at while honking and sneezing
A king sized bed so I did not wake Todd up everytime I got up to blow my nose or gargle
A kind husband who got up early to make a run to the store for medicine (oscillococinum is great!)
Bed pillows scaled for a small person
(usually I get a crick in my neck because they are so big and fluffy!)
Being able to finally sleep with only a few blowing/gargling interruptions
Feeling good enough to go on the "spouse outting" and make the banquet
(Had to miss the big social outting but with two naps and in jammies by 8 - I made it!)
Fantastic service at LaToretta Resort that made my misery more bearable with great vegetarian food and much kindness
The most humbling thing for me in the last few days has been all the people who have come up to me and said they were praying for me - daily! Of those people, only some of them I know!!! Imagine having a total stranger come up and hug you and say that they pray for you every day??? I cannot even type it without crying. It is a little embarassing to get teary eyed and then say, "thank you so much - it means so much to me - what's your name???" Fortunately, people are very understanding :) I am blown away by the brotherhood that is within this group. This is the conference that I was able to attend 5 years ago, while on chemo,when it was in Las Vegas at the Red Rocks resort. Some of the people are still attending this conference now - and it is one of our favorites!
What is even more humbling is to see how my story has affected other people. One gentleman that I do know, came up to me and gave me a huge bear hug - told me they pray for me daily and began to cry....This big, tough, successful businessman and I stood there and hugged and cried (I can't let anyone cry alone - it's just rude :))
My point with all this is that you do not know how you touch people. Clearly, my story touched him greatly! God is using it in some way in his life. It's not my deal what/how that is -- I just need to be faithful to God's calling me to write and be transparent -- and He uses it for His purposes. Do you know how wonderful it is to see some good come out of my struggle? It is so encouraging to actually see that this is not for nothing!
It was such an emotional, blessed time -- despite being sick, not being able to attend much, and weak as a newborn pup. Praying that I get better soon. I am so thankful to have put faces with some of you who pray so faithfully! Never doubt that your prayers make a difference!! I am so thankful for all of you!!
Thanks for checkin' in!
But that is not all the news!!!!
Remember the difficulty in getting the medicine from Mexico - how he assured me there was the probability that it would get caught at customs for days, up to 2 mos?
It arrived Friday!!! I ordered it Monday night!!!
That has to be God - it is NOT a coincidence - He is ordering the details for me!
So thankful!
Flew to Texas for the ALSS conference with Todd (Association of Lutheran Secondary Schools) and got a wicked bad cold/flue thing. Went to bed and stayed there for a day and a half- and still not better!
Thankful for:
A beautiful view to look at while honking and sneezing
A king sized bed so I did not wake Todd up everytime I got up to blow my nose or gargle
A kind husband who got up early to make a run to the store for medicine (oscillococinum is great!)
Bed pillows scaled for a small person
(usually I get a crick in my neck because they are so big and fluffy!)
Being able to finally sleep with only a few blowing/gargling interruptions
Feeling good enough to go on the "spouse outting" and make the banquet
(Had to miss the big social outting but with two naps and in jammies by 8 - I made it!)
Fantastic service at LaToretta Resort that made my misery more bearable with great vegetarian food and much kindness
The most humbling thing for me in the last few days has been all the people who have come up to me and said they were praying for me - daily! Of those people, only some of them I know!!! Imagine having a total stranger come up and hug you and say that they pray for you every day??? I cannot even type it without crying. It is a little embarassing to get teary eyed and then say, "thank you so much - it means so much to me - what's your name???" Fortunately, people are very understanding :) I am blown away by the brotherhood that is within this group. This is the conference that I was able to attend 5 years ago, while on chemo,when it was in Las Vegas at the Red Rocks resort. Some of the people are still attending this conference now - and it is one of our favorites!
What is even more humbling is to see how my story has affected other people. One gentleman that I do know, came up to me and gave me a huge bear hug - told me they pray for me daily and began to cry....This big, tough, successful businessman and I stood there and hugged and cried (I can't let anyone cry alone - it's just rude :))
My point with all this is that you do not know how you touch people. Clearly, my story touched him greatly! God is using it in some way in his life. It's not my deal what/how that is -- I just need to be faithful to God's calling me to write and be transparent -- and He uses it for His purposes. Do you know how wonderful it is to see some good come out of my struggle? It is so encouraging to actually see that this is not for nothing!
It was such an emotional, blessed time -- despite being sick, not being able to attend much, and weak as a newborn pup. Praying that I get better soon. I am so thankful to have put faces with some of you who pray so faithfully! Never doubt that your prayers make a difference!! I am so thankful for all of you!!
Thanks for checkin' in!
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