Due to stalling to take some supplements to boost my killer cell numbers,
-my blood draw counting my natural killer cells is early morning and
-my oncologist appointment is this afternoon.
Prayers for both are appreciated!
Still no word on USC -hoping for clarification at oncologist appointment.
We have been traveling, living life —
The last weeks have been a blur....many lows - many tears - but also God has blessed me with some real highs.
I got to fly to MT to surprise Karl for his 30th birthday - and he actually was surprised! Time with our kids and grandkids is great medicine!
Also we went to NY for a conference—It was a blast! I have felt great, found some clean food to eat and have walked a lot... feeling so blessed!
On another note, I had an additional brief conversation with my integrative doc and asked him if he thought I could do better than 6 mos. He said absolutely because the people in the statistics are not in as good a shape as I am - as strong to fight and they are not doing any other additional therapies. That was a real boost to my emotions. I do not kid myself that I have lots and lots of time tho, unless God intervenes.
Thankful for
My delightful concierge who arranges all my travel
Time with family
Re-learning how to play
Encouragement from my integrative doc
My cold laser therapist who works so hard to help me
Kleenex -
Walking 7.5, 4.5, 3.5, 2, 3.4, 3 and 3.5 miles over the last week!
Getting to travel and build memories
Prayers with a healing pastor!
Your prayers carrying us through this mind-numbing, shock-like pain
I will not die, but live and declare what the Lord has done!
Praying hard for wisdom and longevity...
Thanks for checkin in!
Friday, June 29, 2018
Friday, June 15, 2018
New Prayer Request Please!
My oncologist is referring me to USC for a possible clinical trial. I don't know if we qualify ... but USC will give it some consideration.
My integrative doc says I am a candidate for CAR-T therapy IF my natural killer cell count is high enough for them to harvest and grow a new colony. Historically my NK count has been very low, like double digit when I need thousands!
By reading the fine print on the drug that the oncologist wants to put me on, we discovered that statistically, I have about 6 months to live...I understand that statistics are just a number on a piece of paper -- however, I have clearly been in denial. When I was re-diagnosed, the stats then were 2 1/2-5 years....of which I went alternative for one year...So - God is on the throne and He has a plan which we do not understand-but it does not look very positive. This does not mean that I am giving up, or that I do not believe in miracles - they absolutely can happen...I am trying to be realistic and not stick my head in the sand about my situation.
Two reasons I am sharing this - 1) I want prayers that I'm here a long time - but 2) is that this is a warning to anyone in this situation -- read everything you can find - read the fine print - grasp what it says. The oncologist would never have said this, except that we really pinned her down... Yes it's good to know, but gosh it hurts....
Please pray with us
for wisdom about which direction to take - if USC is an option
that my natural killer cells miraculously jump in number so I'd be a candidate for CAR-T therapy
for clear thinking
for my life to be extended to a good old age
I am so exhausted from crying and grieving about this-hopefully this will be coherent. I feel bludgeoned-beaten. If you are helping someone who is in this kind of a situation - don't be surprised if they get dopey. Physical exhaustion is real as well as the emotional exhaustion of processing. Naps are so necessary. If they just fall asleep on you - that is a great blessing! Don't be surprised or offended... I don't have the words to explain how hard it is to think about whether you 'll be around at Christmas.....
Jer 17:14 Heal me oh Lord and I will be healed.
Save me and I will be saved for you are the one that I praise.
A positive thing to leave you with - an indicator that perhaps God's gonna keep me around (we can only pray) There was a 50/50 chance that the oncologist would notice that the wording was ambiguous. That the radiologist left out that there were new lesions is incredible to me. Yet, God intervened and pushed my onco to go and talk to the radiologist - to look at the films.
Praying he continues to intervene -
Praying also that this made sense as I am so worn out.
Thursday, June 14, 2018
Not healing - Getting Immune
Chemo stayed the same this time.
The oncologist went to view the films to determine the extent of progression as the report is written obscurely. Sadly, there are new lesions on the liver and the progression is "significantly worse." Why the radiologist did not say that is beyond me!
Her suggestion is to change my chemo to oral chemo - stivarga (if anyone has any experience with this particular chemo I'd love to hear from you) starting at the end of the month. It is a 28 day cycle, where I take the pills for 21 days and then am off for only 7 days...The diet is very strict and gross - white bread, low fat marg 1 T of jelly for breakfast when I take the pill...Don't really know how that would work as that is not remotely how I eat. The list of side effects is daunting to say the least!
On the other hand, my integrative doc suggested CAR-T therapy which is immunotherapy...seems to be for blood cancers, but he says it is also for solid tumor cancers. It is very doubtful that it would be covered by insurance and it is very expensive....
The big question is, would it work for me? My oncologist said that the foundation 1 test that I took in January ruled me out for immunotherapy because I did not have the receptors necessary for it to be effective....so I don't know if it would work.
Basically, my hair growing back and me tolerating things better that I foolishly, hopefully thought was God healing me, is just my body becoming immune to the chemo that I am on...
Please pray that
my liver continues to function normally
we have wisdom regarding what route to take next
we have strength to think clearly as all this information is thrown at us
Todd's strength and wisdom do not fail
Thanks for the prayers - you have no idea how they carry us!
Jer 17:14 Heal me oh Lord and I will be healed.
Save me and I will be saved for you are the one that I praise.
Thanks for checkin in!
Sunday, June 10, 2018
Pushing through
Mouth sores coming and going
Good off week - nice energy, but sleeping well
Trying hard to drink a lot of water - averaging about 70 oz a day
Walking more - but really noticing how depleted my stamina and muscles are - i come home so exhausted and winded.
Working hard counting carbs and trying to lower my animal protein intake (brutal!)
Can tell where the tumors are larger - the PET explained the discomfort...
Tues appointment with oncologist - we'll see what she says
I was not going to write 'til next week, but so many people have commented, "I don't know how you are getting through this."...so here is a window into my world.
The news really rocked my world. I was so sure it was gonna be a good scan that this has pulled the rug out from under me and really tested me.
In order to survive without crying uncontrollably all day long and to make the time pass, I stay busy. I plan one fun thing to do each day --
It generally involves other people because then I am accountable to put clothes on. It is was too easy to stay in my pjs and just cry and mope around the house thinking morbid thoughts, like will I get to meet our younger son's children? and how many more trips am I going to be able to make? and other uplifting things like that(sarcasm.) Having an appointment forces me to get up and wash my face and put on presentable clothes. Just doing that makes me feel better!
When my plans for the day fall through, as they did Friday, it is really hard to combat. I was so sad and it was as much just general grief over my situation as it was disappointment with not getting to see my friend and not having a plan B. As I went through the list of friends, trying to think who to call last minute, one was working, one was traveling, one had a death in the family....but God provides and one was available, tho not til dinner time. In the meantime, there were errands to run. Stay busy!
At one of my stops, I ran into a friend who is having some health challenges - digestive issues very similar to my own. As we chatted, we quickly cut through the platitudes and dove deeper into serious questions like, what drink would taste good, stay down and be low carb! (welcome to my world!) I was in no mood for chit chat, but to be able to share what worked for me and encourage him -to find the products in the store, so he did not have to search all over the store for them (my pet peeve) was such a blessing to me. Thinking about something besides myself, my aches and pains, care of my body and my grief, by setting myself aside and thinking about him - what would work for his issues - helped me so very, very much.
When your life is difficult - look for someone to help. It's the best medicine around!
If you are trying to help someone in my situation, or any rough situation, sending notes, cards, e-mails and texts is a great blessing. It is better than a phone call, tho those are helpful sometimes also (providing I'm are not crying so hard, I'm hiccuping) The reason they are so helpful is that I can re-read them. I have received some of the most beautiful messages -- and don't worry about saying the right or wrong thing -- most people have said "there are no words - I don't know what to say" and I get that! Saying you are thinking/praying for me is so helpful. Scripture is helpful. Checking in to just make sure I am hanging in there is helpful.
Well timed messages can make all the difference. Just before appointments - After appointments -- One friend messages me when she goes to bed. Sometimes I'm asleep already, but to know that I'm in her thoughts/prayers at the close of the day means so much. However, be understanding if you do not hear back. Don't take that as a sign that you are not wanted or appreciated - assume that I'm too tired/weepy/weary/sad to respond with any degree of grace - or that I am taking my own advise and am staying busy!
When all else fails, I get domestic. Even though I may have no clue how to get through the week, I do know how to clean a toilet (a friend said that to me during one of her valleys and it stuck) By focusing on domestic work, it keeps my world calm by being clean and orderly and keeps my hands busy. The added bonus is that I feel "healthy" that I can do the normal, boring things of every day life that I was unable to do a year ago.
God gives you grace for what you are going through when you are going through it and not before.....None of this is to show you how great I am! The whole point of this blog is to give you information so that you are better equipped to help someone else in a tough situation. The only reason I can get through any day is that your prayers and God's grace carry me!
By staying busy and praying a lot, I am able to go day by day - to continue fighting this beast! I hope this is a blessing to someone out there!
Ps 118:17 I will not die but live and will proclaim what the Lord has done.
Jer 17:14 Heal me oh Lord and I will be healed;
save me and I will be saved for you are the one that I praise.
Thanks for checkin' in!
Good off week - nice energy, but sleeping well
Trying hard to drink a lot of water - averaging about 70 oz a day
Walking more - but really noticing how depleted my stamina and muscles are - i come home so exhausted and winded.
Working hard counting carbs and trying to lower my animal protein intake (brutal!)
Can tell where the tumors are larger - the PET explained the discomfort...
Tues appointment with oncologist - we'll see what she says
I was not going to write 'til next week, but so many people have commented, "I don't know how you are getting through this."...so here is a window into my world.
The news really rocked my world. I was so sure it was gonna be a good scan that this has pulled the rug out from under me and really tested me.
In order to survive without crying uncontrollably all day long and to make the time pass, I stay busy. I plan one fun thing to do each day --
It generally involves other people because then I am accountable to put clothes on. It is was too easy to stay in my pjs and just cry and mope around the house thinking morbid thoughts, like will I get to meet our younger son's children? and how many more trips am I going to be able to make? and other uplifting things like that(sarcasm.) Having an appointment forces me to get up and wash my face and put on presentable clothes. Just doing that makes me feel better!
When my plans for the day fall through, as they did Friday, it is really hard to combat. I was so sad and it was as much just general grief over my situation as it was disappointment with not getting to see my friend and not having a plan B. As I went through the list of friends, trying to think who to call last minute, one was working, one was traveling, one had a death in the family....but God provides and one was available, tho not til dinner time. In the meantime, there were errands to run. Stay busy!
At one of my stops, I ran into a friend who is having some health challenges - digestive issues very similar to my own. As we chatted, we quickly cut through the platitudes and dove deeper into serious questions like, what drink would taste good, stay down and be low carb! (welcome to my world!) I was in no mood for chit chat, but to be able to share what worked for me and encourage him -to find the products in the store, so he did not have to search all over the store for them (my pet peeve) was such a blessing to me. Thinking about something besides myself, my aches and pains, care of my body and my grief, by setting myself aside and thinking about him - what would work for his issues - helped me so very, very much.
When your life is difficult - look for someone to help. It's the best medicine around!
If you are trying to help someone in my situation, or any rough situation, sending notes, cards, e-mails and texts is a great blessing. It is better than a phone call, tho those are helpful sometimes also (providing I'm are not crying so hard, I'm hiccuping) The reason they are so helpful is that I can re-read them. I have received some of the most beautiful messages -- and don't worry about saying the right or wrong thing -- most people have said "there are no words - I don't know what to say" and I get that! Saying you are thinking/praying for me is so helpful. Scripture is helpful. Checking in to just make sure I am hanging in there is helpful.
Well timed messages can make all the difference. Just before appointments - After appointments -- One friend messages me when she goes to bed. Sometimes I'm asleep already, but to know that I'm in her thoughts/prayers at the close of the day means so much. However, be understanding if you do not hear back. Don't take that as a sign that you are not wanted or appreciated - assume that I'm too tired/weepy/weary/sad to respond with any degree of grace - or that I am taking my own advise and am staying busy!
When all else fails, I get domestic. Even though I may have no clue how to get through the week, I do know how to clean a toilet (a friend said that to me during one of her valleys and it stuck) By focusing on domestic work, it keeps my world calm by being clean and orderly and keeps my hands busy. The added bonus is that I feel "healthy" that I can do the normal, boring things of every day life that I was unable to do a year ago.
God gives you grace for what you are going through when you are going through it and not before.....None of this is to show you how great I am! The whole point of this blog is to give you information so that you are better equipped to help someone else in a tough situation. The only reason I can get through any day is that your prayers and God's grace carry me!
By staying busy and praying a lot, I am able to go day by day - to continue fighting this beast! I hope this is a blessing to someone out there!
Ps 118:17 I will not die but live and will proclaim what the Lord has done.
Jer 17:14 Heal me oh Lord and I will be healed;
save me and I will be saved for you are the one that I praise.
Thanks for checkin' in!
Wednesday, June 6, 2018
Things are not as they appear.....
I do not look like a stage IV cancer patient.
however, every once in a while there are some
pretty tough reminders...
My PET scan results were not what I had thought or hoped...
All the tumors are larger and all glow brighter...
Not much more to say....oncologist appointment on Tuesday for chemo - will update you later next week...
As always, thank you for the prayers -- I believe that is why I am feeling so good and why I don't look like a cancer patient....Thank you!
Peace does not come
from finding a lake with no storms.
It comes from having Jesus in the boat--
Pastor Wayne Rasmussen
Ps 118:17
I will not die, but live and
will proclaim what the Lord has done
Thanks for checkin' in!
Monday, June 4, 2018
PET scan tomorrow, Tuesday-- Prayers please
3:15 PST PET scan...praying for no progression
Monday afternoon and doing pretty well
weight steady -
not walking enough
fell off the low carb wagon for a week :(
feeling ok - tired
emotionally worn
mouth sores popping
skin on hands and feet peeling and cracking
sleeping - fair, not great
appetite down
drinking continues difficult
Overall - sickness time has shortened somewhat (no less fierce tho)
It is taking a toll on my body tho
Last week we asked at what point the chemo would start to kill me faster than the cancer. She said that 18 -24 mos they usually see a toxicity jump. However I am doing my cold laser treatments every week and my vitamin c infusions every other week, both of which work to boost my immune system. Hopefully this along with all the other stuff will push that number out further...
We also asked about a chemo vacation. My oncologist said firmly that the chemo is controlling the disease and while I may have a 1 week delay, anything else is not recommended....To say I was disheartened is an understatement. I had been hoping for a month off...
We also spoke with her about my emotional exhaustion...sadly her response was to take more of my anti-anxiety pills - which also does double duty as nausea medication....I had been hopeful that she would see the merit of giving me a month break to ease the emotional fatigue....No such luck!
We were blessed by the speed with which my PET was approved. This time I called them - forget waiting around for them to call me!
Ps 118:17
I will not die but live and will proclaim what the Lord has done!
Hope I get to do that a long time!
A fun trivial sidelight - I have subscribed to a blog for years called MissusSmartyPants. She is a fashion stylist and has been very helpful as my shopping has been greatly curtailed. Last week her article was about changing your hairstyle. On a whim I sent in a picture of my hair -- look who made the blog?!
Hope it makes you smile!
Regarding last weeks post, I am trying hard to pull myself out of this funk - not very successful at doing so - but thankfulness helps!
Thankful for
my continuously busy Bed and Breakfast
gorgeous weather and breezes
blossoms, butterflies and birds
dear friends who help out however they can
your faithful prayers that make this bearable -
truly, I do not know how we would endure without them
God's word that comforts especially when I cannot sleep
Todd's faithful, loving care - even when I don't like some of his observations...
Paul's surgery steadily healing
our sons and daughter in loves
grand daughter antics to liven things up
God conversations wherever they happen
Thanks for checkin' in!
Monday afternoon and doing pretty well
weight steady -
not walking enough
fell off the low carb wagon for a week :(
feeling ok - tired
emotionally worn
mouth sores popping
skin on hands and feet peeling and cracking
sleeping - fair, not great
appetite down
drinking continues difficult
Overall - sickness time has shortened somewhat (no less fierce tho)
It is taking a toll on my body tho
Last week we asked at what point the chemo would start to kill me faster than the cancer. She said that 18 -24 mos they usually see a toxicity jump. However I am doing my cold laser treatments every week and my vitamin c infusions every other week, both of which work to boost my immune system. Hopefully this along with all the other stuff will push that number out further...
We also asked about a chemo vacation. My oncologist said firmly that the chemo is controlling the disease and while I may have a 1 week delay, anything else is not recommended....To say I was disheartened is an understatement. I had been hoping for a month off...
We also spoke with her about my emotional exhaustion...sadly her response was to take more of my anti-anxiety pills - which also does double duty as nausea medication....I had been hopeful that she would see the merit of giving me a month break to ease the emotional fatigue....No such luck!
We were blessed by the speed with which my PET was approved. This time I called them - forget waiting around for them to call me!
Ps 118:17
I will not die but live and will proclaim what the Lord has done!
Hope I get to do that a long time!
A fun trivial sidelight - I have subscribed to a blog for years called MissusSmartyPants. She is a fashion stylist and has been very helpful as my shopping has been greatly curtailed. Last week her article was about changing your hairstyle. On a whim I sent in a picture of my hair -- look who made the blog?!Hope it makes you smile!
Regarding last weeks post, I am trying hard to pull myself out of this funk - not very successful at doing so - but thankfulness helps!
Thankful for
my continuously busy Bed and Breakfast
gorgeous weather and breezes
blossoms, butterflies and birds
dear friends who help out however they can
your faithful prayers that make this bearable -
truly, I do not know how we would endure without them
God's word that comforts especially when I cannot sleep
Todd's faithful, loving care - even when I don't like some of his observations...
Paul's surgery steadily healing
our sons and daughter in loves
grand daughter antics to liven things up
God conversations wherever they happen
Thanks for checkin' in!
Subscribe to:
Posts (Atom)