Overall, it has been a good 2 weeks
Picked up a few pounds and am holdin’ them
Gave up on walking
Sleeping a fair bit,
Trying really hard to balance the pain medicine with the pooping meds, as the lack of pooping can cause lots of pain. (Ya hafta laugh when you can)
Pain meds make me really emotional-can’t do much about that-please pass the tissues!
Neuropathy is a new (for this round) beast-but it is not as awfull as it could be.
Mouth sores not a problem yet-yay!
Gut swelling up a bit-looks a little like I’m pregnant...
Drinking water is still difficult -it just does not taste good...
Not having any idea what to expect, I went into this week with many prayers, an open mind and hoped for the best. God has blessed me richly!! Rather than one week down and one up, this has been more uniformly spread out-not quite so sick the first week, but lasting into the second week for longer.
The nausea has been fair, not nearly as bad as it could have been! Praise you Jesus! The medicine that I have, has kept it under control. Nausea is lasting longer than it used to and i am praying that it means that the chemo is working and killing the cancer!
The pain in my gut has been difficult to control, but I’m getting better at that. Pain management is such an art form with a long learning curve...
Eating has been fair-not great, but i can eat. Nothing really sounds good, when asked what i want, but when i eat it tastes ok-so I’m very thankful for that!
I’m sleeping a lot. The first week, i slept less than normal( for a chemo week.) The second week, I’m sleeping more than normal. So weird!
After review with the palliative doc, i realized that it hurts my gut to walk, so I am just thankful to be outside when I can be. This is a real loss of independence for me tho. I have always been a walker and understanding that it was causing a fair bit of my pain in the mornings really makes me sad. To me walking was always a sign of being healthy or working toward being healthier and it brought much joy. Not walking obviously means that i don’t have that hope of getting better, which is quite a blow...
It is similar to having to trade cars with Todd. My cut little red zoomer is a clutch, which i love, but using my abs to shift was not helpful and escalated my pain level... all this makes me sad.
Neuropathy is nerve pain. For me, with this chemo, it shows up in both my hands and feet when in contact with heat or cold. Taking things from the fridge I have to use a towel or hot pad. Same with pouring salad dressing, drinks, handling cold packages like left overs. I have been blessed tho that my mouth is not too terribly sensitive yet. Food can be pretty warm. Cold I have to be a bit more careful of. In my mouth, it is a true freezing sensation, whereas my hands feel like an electrical shock traveling up my hands. While this is unpleasant, i am thankful it is not worse.
Chemo brain is worse than it had been-simple things are harder for me to figure out. Yuck!
All this sounds clean, analytical and straightforward-but then there are the emotions...When lying down to take a nap, the brain wont stop processing...tears well up and won’t stop. I say memory work and then pray to try and stem the tide.....“Lord I’m scared-so scared as my gut swells up and pokes out, my breath is short with no exhertion ...i trust you lord-i love you lord -but I’m so sad and don’t want to leave my family.” Tears flow non stop.....
Is 26:3 You will keep in perfect peace him whose mind is fixed on you—
Lord, help me fix my mind on you and not on my fear...
It feels like i have just hit the best part of my life...i want to stay and relish it
-but not my will-yours Lord.
Yet in retrospect, You have blessed me so richly...Thank you for
-An unexpected trip back to Montana with a trip to Idaho thrown in for good measure—
-the beauty of nature mixed with the joy of granddaughters pretend play and expanding vocabulary...
-the peace of sitting by a lake and watching the birds
-the comfort of loving conversations, especially hard ones. The “what if’s” of family and friends that walk with you as you stumble the road home to heaven, helping you figure out how to do this hard thing with hope and faith. It is not easy to truly put your hope in God when “the earth gives way and the mountains fall into the heart of the sea” (Ps 46)or it seems like they are... to hold fast to words and promises when your body is rebelling....
I got distracted from my thankful list-
So many God stories-
-Thank you for moving my connecting flight from a separate terminal to the gate right next door to my plane
-For guarding my mom’s bracelet when it flew off at TSA inspection (I’ve lost enough weight that my jewelry is not fitting well anymore)
-For the smoke not being as thick as predicted
-For our granddaughters joy over my mother’s tea set
-For the tea set making it to Montana unbroken!
-For dear friends who help with all kinds of weird details
-For loving, encouraging texts from so many people
-For my amazing husband who arranges all my travel plans and views each as a gift he is giving me
These are the kind of things that i am thankful for and that drive the tears away, in combination with “I love you Lord-i trust you Lord-I do not like what’s happening, but i trust you-your will be done...”
So there’s a window into my world the last two weeks-I’m making it-deeply thankful -prayerfully anticipating next Tuesday’s chemo again, hopeful that it will do its work.
I can do all things through Christ who strengthens me...Phil4:13
Thank you so much for your loving check ins with me as to how i am doing. Your kindness and love encourages me to stand firm on God’s strength and love. Praying a good weekend for y’all-each one!
Thanks for loving us through this—you truly are strength for us-sharing God’s love and strength...
Thanks for checkin’ in!
Saturday, August 25, 2018
Friday, August 10, 2018
The Battle Belongs to the Lord
My PET results are bad. Everything is bigger and brighter again and there are new tumors.... that explains the elevated pain.
Thankful for new chemo on Tuesday
Now, God has an even bigger miracle to do...
The battle belongs to the Lord...
2 Chron 20:15
.....and we sing glory, honor, power and strength to the Lord...
I trust you Lord....I’m scared, but i love you and I trust you...
Thanks for your continuing prayers – we definitely need them. Thanks for checking in!
Sunday, August 5, 2018
A Glimmer of Hope
Where to begin...with thankfulness!
Thank you so much for the outpouring of love, support, prayers, notes
and hugs when I see you! Your faithfulness with the prayers has
yielded much fruit in the course of the last few days. We felt the
presence of God as we made decisions and were blessed with His peace.
We needed hope and clarity and God blessed us with both of those!
Thanks for continuing to carry us in your prayers!
I won't bore you with all the details from all appointments, but here
are a few highlights --
Meeting with a palliative care doc is not the most uplifting thing
that you can do. It is discussing how the end of your life is gonna
go - and that can be pretty rough. That being said, I really like
her. She is a great combination of straightforward and compassionate.
She will be the one handling most of my medications now, which will
simplify things for me.
As you may have gathered from my prior post, I really did not have
much hope going to USC or to City of Hope. The basis of this was that
anything they would give me would make me really sick because it is
trying to kill something --- and the quality of life would not be
great.
However, when you ask God to show up, He does, and we should not be
surprised when he does!
A few side notes - in random order:
-The PA as USC was a wonderful person- she was a perfect mix of
business and compassion! Really liked her and the PA is the one I have
worked with the most at my oncologist's office.
-The USC doc is from Germany and speaks with the German accent -
something that kinda makes my heart smile as my family of origin was
100% German and I spoke only German until I was 5.
-The exam I had was one of the most thorough exams I have ever had -
checking dates/details/reports and poking and prodding more thoroughly
than usual.
-He does PET scans every 6 weeks, not every 3 months (so we know
results more quickly!)
-He wants to do the genetic testing (I have not qualified before - not
enough people in the family with cancer) He said that because I was
diagnosed before 50, it should have never been an issue! I had the
test done and the blood work is already on its way. He is hoping it
will show some tendencies that if we have to go to Plan B, may be
helpful.
-He wants to do a liquid biopsy- which I did while I was there.
What's a liquid biopsy? Well it is it a blood draw to see what the
currently circulating cancer cells look like. Currently we are
working with biopsy from March, 2016 when the tumor was removed. That
is really irrelevant because what is important is to see what the
tumors that have survived the chemo look like, so that he can target
them!
-Because he is at a teaching clinic, he is not bound to follow
"protocol" like my current oncologist is. He is able to tweak doses
and administer things as he sees fit. That's huge!
Bottom line - (not going to muddy the waters with all the options) He
is recommending that I go back to folfox and add in avastin. In
English, this means going back to the chemotherapy that I did in
Milwaukee for 6 mos! The time lapse between being on it and the
re-occurance of the cancer indicate that it may still be a strong tool
to shrink the tumors! The avastin is the add-in chemo that we had
been using to keep new tumors from forming - it is generally the
protocol for reoccurrence.
Upsides to this:
-I've done it before- I can do it again!
-I was not on it long enough to become immune
-In Milwaukee, I got a bolus infusion (a syringe full) of 5Fu (the
main chemo drug) between my infusion in the lab and hooking up my
pump. He's not going to do that!!! says it adds toxicity and there is
no efficacy for it!!! This means it will be easier to bear!!!!
-My present oncologist can administer this at her office - huge
quality of life deal to not have to get a driver to drive 1.5 hours
each way with 3-4 hours in the middle!
-I currently have a chemo appointment for Tuesday - wishing/hoping
everything works that I can start the new chemo then - However it will
not happen until I have a baseline PET scan. which can take up to 2-3
weeks to get
-In the event that the folfox does not work, he has a plan B -
immunotherapy which I will not get into right now because this is like
drinking from a fire hose...
-We asked about NK expansion and he did a simple word picture for me.
NK expansion works so well with leukemia, etc. because all those cells
look the same - they all wear the same hats, so to speak. The NK
cells can be trained to go kill the guys with the hats. However, (I
did not know this) colon cancer is a combination of diseases. Not all
the cells look the same! Training the cells to kill just one type
would not be effective! Based on this word picture, that time is not
on my side, and the fact that no one would oversee me if I ended up in
the hospital from a reaction to NK (because my integrative doc is not
affiliated with a hospital) God made it really clear that this was not
an option for me. Thank you God for the clarity!
-When he asked why I was so hesitant, I told him I had an appointment
with City of Hope. He chuckled and said they were great people over
there, but I would get better help with him. (It's nice to have a doc
with swagger!) We showed him what it was that City of Hope would
offer me and he said it was a very logical protocol to offer.
However, he said there was not much data associated with the results.
As he let that hang, I was reminded of the end of my conversation with
the PA.
I asked her to be honest with me - that my oncologist had said I
probably had til Christmas and in her 20 years of experience what did
she think. She sat down next to me and put her hand on me and said,
"Honestly, I couldn't even guarantee Christmas...and I am basing that
on all the changes you have seen since early June." (when my
oncologist took me off the folfiri and said stivarga or USC and I
opted for USC)
(In my last post I talked about changes I had seen - gauntness,
tiredness, weight loss, pain increase...)
As the oncologist talked about there not being much data with the City
of Hope offering, he was saying that I need results fast - tumors to
shrink fast! The older, less sexy option hopefully will provide that.
We have asked God to be present and clear and He was! Things became
very clear! We decided to go with USC.
Take aways from this - God is able and we should not be surprised when
He acts in our behalf. Thoughts that come "out of the blue" are not
"coincidences." They are wonderful demonstrations of God's provision.
He knew how badly I needed some hope - even if tempered by the
sobering comment from the PA that she could not guarantee Christmas...
Hebrews 13:8 Jesus Christ is the same yesterday, today and forever.
Just as he was powerful and active when he was here, he is still
powerful and active in our behalf...For which we are so thankful!
To give you an idea of how I am "really" doing, here is a Snapshot
into my world- how far I have slid downhill in the last 2 months...
Get up, get dressed, eat breakfast and head out the door to walk. Get
1/2 down the block, Realize that my gut hurts- and my shoulders hurt.
Have mental conversation about whether it is better to push and try or
to not aggravate my tumors. Turn around and go home, accompanied by
major frustration. By the time I’m home – I am almost doubled over in
pain. The frustration of being unable to do what is good for me Is
overwhelming. I sit and cry, as best you can, when it hurts to cry, in
pure frustration over how far I have slipped. How am I to ever get
strong again? The realization that I probably won’t get strong again
hit’s like a cold ocean wave, triggering fresh tears. There really is
nothing positive about all of this – just tears and clinging to God...
Back to bed for a nap... my days are a series of naps...by 1:30 today
i had had 3 1-1.5 hour naps! I don’t do much other than sleep and bare
necessities -it is so discouraging-where is the hope?
Ps 37:9 But now, Lord, what do I look for? My hope is in you...
I cling to God, to his unfailing mercy and faithfulness -
Lamentations 3:21-23 But this I call to mind, therefore I have hope:
The steadfast love of the Lord never ceases; his mercies never come to
an end; they are new every morning; great is your faithfulness."
God -
therein lies my hope when my body fails me and hope seems dim and distant --
God is loving and faithful and near...
Please pray with us that I can get scheduled quickly for a PET scan -
it usually takes 2 weeks and I cannot start chemo without a PET
Thanks for your amazing prayers and
Thanks for checkin in!
Thank you so much for the outpouring of love, support, prayers, notes
and hugs when I see you! Your faithfulness with the prayers has
yielded much fruit in the course of the last few days. We felt the
presence of God as we made decisions and were blessed with His peace.
We needed hope and clarity and God blessed us with both of those!
Thanks for continuing to carry us in your prayers!
I won't bore you with all the details from all appointments, but here
are a few highlights --
Meeting with a palliative care doc is not the most uplifting thing
that you can do. It is discussing how the end of your life is gonna
go - and that can be pretty rough. That being said, I really like
her. She is a great combination of straightforward and compassionate.
She will be the one handling most of my medications now, which will
simplify things for me.
As you may have gathered from my prior post, I really did not have
much hope going to USC or to City of Hope. The basis of this was that
anything they would give me would make me really sick because it is
trying to kill something --- and the quality of life would not be
great.
However, when you ask God to show up, He does, and we should not be
surprised when he does!
A few side notes - in random order:
-The PA as USC was a wonderful person- she was a perfect mix of
business and compassion! Really liked her and the PA is the one I have
worked with the most at my oncologist's office.
-The USC doc is from Germany and speaks with the German accent -
something that kinda makes my heart smile as my family of origin was
100% German and I spoke only German until I was 5.
-The exam I had was one of the most thorough exams I have ever had -
checking dates/details/reports and poking and prodding more thoroughly
than usual.
-He does PET scans every 6 weeks, not every 3 months (so we know
results more quickly!)
-He wants to do the genetic testing (I have not qualified before - not
enough people in the family with cancer) He said that because I was
diagnosed before 50, it should have never been an issue! I had the
test done and the blood work is already on its way. He is hoping it
will show some tendencies that if we have to go to Plan B, may be
helpful.
-He wants to do a liquid biopsy- which I did while I was there.
What's a liquid biopsy? Well it is it a blood draw to see what the
currently circulating cancer cells look like. Currently we are
working with biopsy from March, 2016 when the tumor was removed. That
is really irrelevant because what is important is to see what the
tumors that have survived the chemo look like, so that he can target
them!
-Because he is at a teaching clinic, he is not bound to follow
"protocol" like my current oncologist is. He is able to tweak doses
and administer things as he sees fit. That's huge!
Bottom line - (not going to muddy the waters with all the options) He
is recommending that I go back to folfox and add in avastin. In
English, this means going back to the chemotherapy that I did in
Milwaukee for 6 mos! The time lapse between being on it and the
re-occurance of the cancer indicate that it may still be a strong tool
to shrink the tumors! The avastin is the add-in chemo that we had
been using to keep new tumors from forming - it is generally the
protocol for reoccurrence.
Upsides to this:
-I've done it before- I can do it again!
-I was not on it long enough to become immune
-In Milwaukee, I got a bolus infusion (a syringe full) of 5Fu (the
main chemo drug) between my infusion in the lab and hooking up my
pump. He's not going to do that!!! says it adds toxicity and there is
no efficacy for it!!! This means it will be easier to bear!!!!
-My present oncologist can administer this at her office - huge
quality of life deal to not have to get a driver to drive 1.5 hours
each way with 3-4 hours in the middle!
-I currently have a chemo appointment for Tuesday - wishing/hoping
everything works that I can start the new chemo then - However it will
not happen until I have a baseline PET scan. which can take up to 2-3
weeks to get
-In the event that the folfox does not work, he has a plan B -
immunotherapy which I will not get into right now because this is like
drinking from a fire hose...
-We asked about NK expansion and he did a simple word picture for me.
NK expansion works so well with leukemia, etc. because all those cells
look the same - they all wear the same hats, so to speak. The NK
cells can be trained to go kill the guys with the hats. However, (I
did not know this) colon cancer is a combination of diseases. Not all
the cells look the same! Training the cells to kill just one type
would not be effective! Based on this word picture, that time is not
on my side, and the fact that no one would oversee me if I ended up in
the hospital from a reaction to NK (because my integrative doc is not
affiliated with a hospital) God made it really clear that this was not
an option for me. Thank you God for the clarity!
-When he asked why I was so hesitant, I told him I had an appointment
with City of Hope. He chuckled and said they were great people over
there, but I would get better help with him. (It's nice to have a doc
with swagger!) We showed him what it was that City of Hope would
offer me and he said it was a very logical protocol to offer.
However, he said there was not much data associated with the results.
As he let that hang, I was reminded of the end of my conversation with
the PA.
I asked her to be honest with me - that my oncologist had said I
probably had til Christmas and in her 20 years of experience what did
she think. She sat down next to me and put her hand on me and said,
"Honestly, I couldn't even guarantee Christmas...and I am basing that
on all the changes you have seen since early June." (when my
oncologist took me off the folfiri and said stivarga or USC and I
opted for USC)
(In my last post I talked about changes I had seen - gauntness,
tiredness, weight loss, pain increase...)
As the oncologist talked about there not being much data with the City
of Hope offering, he was saying that I need results fast - tumors to
shrink fast! The older, less sexy option hopefully will provide that.
We have asked God to be present and clear and He was! Things became
very clear! We decided to go with USC.
Take aways from this - God is able and we should not be surprised when
He acts in our behalf. Thoughts that come "out of the blue" are not
"coincidences." They are wonderful demonstrations of God's provision.
He knew how badly I needed some hope - even if tempered by the
sobering comment from the PA that she could not guarantee Christmas...
Hebrews 13:8 Jesus Christ is the same yesterday, today and forever.
Just as he was powerful and active when he was here, he is still
powerful and active in our behalf...For which we are so thankful!
To give you an idea of how I am "really" doing, here is a Snapshot
into my world- how far I have slid downhill in the last 2 months...
Get up, get dressed, eat breakfast and head out the door to walk. Get
1/2 down the block, Realize that my gut hurts- and my shoulders hurt.
Have mental conversation about whether it is better to push and try or
to not aggravate my tumors. Turn around and go home, accompanied by
major frustration. By the time I’m home – I am almost doubled over in
pain. The frustration of being unable to do what is good for me Is
overwhelming. I sit and cry, as best you can, when it hurts to cry, in
pure frustration over how far I have slipped. How am I to ever get
strong again? The realization that I probably won’t get strong again
hit’s like a cold ocean wave, triggering fresh tears. There really is
nothing positive about all of this – just tears and clinging to God...
Back to bed for a nap... my days are a series of naps...by 1:30 today
i had had 3 1-1.5 hour naps! I don’t do much other than sleep and bare
necessities -it is so discouraging-where is the hope?
Ps 37:9 But now, Lord, what do I look for? My hope is in you...
I cling to God, to his unfailing mercy and faithfulness -
Lamentations 3:21-23 But this I call to mind, therefore I have hope:
The steadfast love of the Lord never ceases; his mercies never come to
an end; they are new every morning; great is your faithfulness."
God -
therein lies my hope when my body fails me and hope seems dim and distant --
God is loving and faithful and near...
Please pray with us that I can get scheduled quickly for a PET scan -
it usually takes 2 weeks and I cannot start chemo without a PET
Thanks for your amazing prayers and
Thanks for checkin in!
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