Crazy appointment schedule ...

Recovering from chemo pretty well-praying it knocks the tumors down. 

Weight is down a bit 

Not walking as much 

Sleeping a lot-praying this is healing and not the cancer growing...

Getting stiff joints from sleeping in the same positions for hours and hours...

Blessed to have retreated from reality to Montana and enjoyed all the joyous chaos of a baby and almost 4 year old...of teething and pretend play and reading books with Omi, tag with Opa — all kinds of fun play.  This is great medicine interspersed with crying a fair bit-but trying to live in and treasure the moment...

To bring you up to date on what is going on with me, I have a lot of appointments coming up this week - back to reality with a vengence!  

I am writing on Tuesday as we fly home...

Tomorrow, Wed,  I have an appointment with a palliative care doc to discuss next steps for pain management, who will be in charge of what, and a host of other very difficult end of life questions.  

Thursday we meet with USC at 1:45 PST to see if they have anything to offer me hope. 

Friday we meet with City of Hope at 9:00 a.m PST to see if they have anything to offer me hope.  

Friday I must decide if I am doing the NK therapy also, as the draw for that would be on Monday

   Side note on that is that probably neither USC nor City of Hope will want to work with my lab as they are not affiliated with them - which means that I would be doing this on my own and the problem becomes, “what happens if things go wrong and I need hospital care - who will oversee that?”  It is a very difficult decision.  

If I were just meeting with people without the emotional ramifications of all of this, it would not be so difficult, but honestly, even being in Montana, away from reality, playing but wrestling with the “is this the last time” thing - was terribly difficult.  I would read books and tuck in for bed and cry for 1/2 an hour.  Saying goodbyes to extended family was so hard as I don’t know if I’ll be back, or what it will look like - praying I get to go back - 

And so thankful that I was able to do all that I did....So incredibly thankful - and praying for more opportunities.

If you are wondering about the tone of this blog being more pessimistic, it is based on things like increased pain, both referred, digestive and just plain old pain where the tumors are; increased sleep; a more gaunt look; weight loss, tho I am eating; exhaustion after any exertion-mental or physical.

Unfortunately, I have been fighting this beast since 2011....2016 since it came back.   Facts are that this is a vicious cancer that not much can stop.  It does not seem to matter that I have done all these healthy things - though I do believe with all my heart that they do make a big difference, just in my case, the difference was not for as long as I had hoped.  

God can do the impossible! I’m praying for that but had a friend say that miracle was not that God moves the mountain with your faith like a mustard seed. Rather  the impossible is that he makes you ok with it not being moved and you dealing with that situation...i have to say, i think this is true.  The impossibly difficult conversations we are having-the heart breaking situations could not be borne without God’s granting me His peace...

People say, “ you are so strong” and i say this often but it is true—-it’s not me! It’s God carrying me!! When you go through this kind of impossible situation, you can either run from God and be mad and pitch a fit screaming, “ why me-don’t you care?”

Or

You can run to God- cling to him a and keep on crying, wailing, “i trust you-i don’t get it-I’m sad and mad but i trust you.” And in that place of deep sadness and trusting and tears He reaches down and cradles you-blessing you with his peace that just descends on you like a comforting “blankie”. You do not get it but are so thankful for it.... 

so when you see us putting one foot in front of the other-functioning, be absolutely certain that this is NOT us-it is God carrying us...without this incredible gift of His strength, we would do nothing but cry all day—He gives us grace to carry on and to tell you where we get out apparent strength from. 

If you have a friend that is stuck in the “mad at God” stage-just hand tissues, knowing the the ministry of presence is so important...

On another note-we have had many loving inquiries about coming to see us.  At this point, i wear out very easily and at least for the foreseeable future am needing to say thank you for the love but there just is not much of me to go around.  Please understand that this is all part of my decline and the disease...not a reflection on these friendships-actually i am rather heart broken to not be able to just throw open my doors in welcome and sit and visit. Perhaps a Skype call is an option—This is my reality right now...

Ps118:17 I will not die but live—

 And will proclaim what the Lord has done.

Thanks for checkin’ in! 

So much has happened since I last wrote...

So much has happened since I last wrote.  Running conversations with doctors, struggles with logistics, visits from family, tweaking medicine, sleep,pain and tears....
and Todd retiring, effective next June...nothing big going on at all - HA~
(The last line is enough to stop my world in it's tracks!)
Physically, my weight has dropped a consistent 2 pounds, but I have been walking much more consistently (even squeezed a 5 miler in there with incline changes!)
I am sleeping ok - the shoulder pain is mitigated a bit by an enormous rice pack that I freeze
Todd says that I am moaning a lot more at night, which means obviously he is not sleeping as well :(
There have been more mornings where I simply had no energy to get out of bed — where I feel like a cancer patient, rather than feeling like me, who happens to be sick...this is saddening also.
My appetite has decreased, which is not a good sign either.

Because the tumors where growing so quickly, and because of the long wait to get in to USC, I requested that my oncologist give me another round of the old chemo, folfiri, in hopes of reigning in the tumor growth.  That just happened this last Tuesday, and boy had I forgotten how lousy I feel on chemo!  So nice to be without it!  I have forgotten so many of the routines that make it more bearable - magic mouthwash pre-emptiviely! Steroid mouth wash pre emptively! Naps - just because - it beats existing through the discomfort!  
I am sure that the blues that I have now are tied to chemo - however, i cannot deny my situation looks rather bleak.  

To bring you up to date on where things stand, option 1 is to do nothing and seek hospice care.  For various reasons, I do not feel that is the right choice for me at this point- though I have my moments! 
Option 2 is to wait for USC and see if they have any available clinical trials for which I would qualify.  That appointment has been moved up to 8-2.  
Option 3 is to go with NK therapy.  This is where they draw my natural killer cells out, take them to a lab and grow them to 1 billion of them, and then re-infuse them back into me.  There are several downsides to this:  
-the lab takes at least 1 month to grow them, before I can have them back
-this type of therapy should be done in conjunction with something like chemo that will knock down the tumors.  
-this is not approved here in the US so I would need to fly “under the radar” and the concern of what happens if/when I get really sick from the treatment is huge


An interesting turn of events is that I was scheduled to have these drawn over this weekend, but the lab components that are required for this type of a draw are stuck in customs.  
Is God closing that door?  It is working with a very small, start up lab.....hmmm. 

Then
God has given us an option 4 as well.  A parent from Orange Lutheran reached out to Todd saying that he was connected with a very prestigious cancer center and would we like to talk to the President of the organization?  Bottom line, in less than 24 hours, the president spoke with us, forwarded my case to a doc who does nothing but colon cancer (not other types of cancer also) had reached out to us and was giving us some guidance and wisdom, of which option 4 is to come see them since they seem to have some options for which I qualify based on my foundation 1 test.   

Option 5 is to check the NIH list of clinical trials under a certain doctor’s name and see if anything comes up that I might be eligible for.  

I have to say, regarding option 4, when I spoke to the doc that he recommended 2 years ago, that gentlemen told me 8 times in 45 minutes that there was nothing they could do for me.    It is hard to keep my spirits up - yet it seems pretty clear that God opened this door...for which I am thankful - I think...

The reason that I say I think is that processing information is not one of my best things these days.  As a cancer patient ( or any patient going through this kind of trauma), it is difficult to keep information straight and the more information there is, the harder it is.  This kind of information is technical and difficult at best, and then you add in the emotion of the results of the information and it is really, really hard.  It is hard to think you have a path, and all off a sudden your path is changed.  I do not feel as flexible as I was (not that I ever was really flexible - lol)  If you have a friend struggling with this kind of thing, offering to do research for him/her and simplify it for them is quite a gift.  Of course they have to make their own decisions, but sorting through the blah blah and distilling it to the nitty gritty is helpful. 

One friend has told me that she is praying God would either bless or block the paths that are right for me...That gives me some courage...

Ps 27:14 Wait for the LORD; be strong and take heart and wait for the Lord...
Another version says 
Wait for the LORD. Be brave and courageous .  Yes, wait patiently for the Lord...
Some fun things so this is not all bad news - Our brother and family came to see us with their 4 kids and that was great fun - spent a few days just doing summer things  -eating, pool, games, beach, conversations and questions etc... That was where I managed to hike 5.3 miles with incline!  So proud!  Goodbyes were brutal....but thankful to be a part of their lives for a few days!

Have been blessed with some beautiful cards and notes - my thrift shop prayer warriors blessed me richly with a big packet of cards — miss them so much!  

Was blessed by a prayer circle of my sorority sisters from college praying for me - many of whom I had not seen in years!  Tho we could not be together in proximity, we were together in spirit...What a gift!  





Here is another gift of encouragement.   As i was walking one morning, i found this tiny purple flower blooming by the path... you can see how the ground around it looks barren and unable to sustain life-and yet here they are blooming. I feel a little like this flower- On the one hand, I am a walking miracle-that i can be as loaded with tumors as i am yet still  able to travel and see my kids and visit with friends is unbelievable! I am so thankful.  That is indeed a bright blossom in this desert.  Another blossom despite the desert, is how many people have continued to say that my words make a difference-that they are encouraged! This is a gift from God! Only he could bring such a bright blossom out of this desert...



Many have said to me how strong I am...Friends, I am not strong except in God.  It is his strength that carries me — It is His words that encourage me.  I have nothing on my own!  And remember that the time to build a shelter is not in the storm.  In other words - take time when things are going well to spend time with God and get to know his promises, to write them on your heart so that when you need them they will be a part of you.  You need them a part of you to be able to fight this awful battle.  

Many thanks for all your prayers and support.  It is getting increasingly difficult as I get notes from people who say, "I won't be able to get there to see you, but..."  The finality of it all is difficult, yet I am so thankful for their prayers in our behalf!

You all are such a blessing! Thanks for checkin in!

Prayers for decisions please!

Fear stalks, now bringing along it's weapon of pain. 
It has been quite a rough week as my pain has increased substantially. I am back to painkillers 3x in 24 hours instead of 2x.  My belly is distending more, revealing the tumor growth.   I am also sleeping more-not a good sign.  
A week ago, I thought they were nuts to say I might be gone in 6 mos-now i have to wonder if these really are my last days...all of which makes me cry hard-which hurts cause the tumors are bigger...... sleep is now interrupted by pain and tears-it is dreadful... my right shoulder hurts intensely-referred pain from the tumor in my liver, which i now feel a great deal more than i did...I'm frightened as i feel the tumors grow and wait to get in to usc or to see if my killer cells are high enough to use for car-t therapy....and feel as though i am doing nothing.  Have not used the laetril more because using it was at the beginning of this downhill slide...

I thought tears were ever present before-HA! Those were rolling tears with a few sobs.  These are the deep sobbing tears that hurt because it jars the tumors in my diaphragm, in my lungs and around my heart (can i really have this many tumors?)  This pain scares me— that i can feel that the tumors have grown and it starts all over again...
I'm sad, scared and still need to function...
Can't cry all day! 
That's not living life!! 
And i desperately want to live life!

When life is unbearable—give thanks!  I’m thankful for:
-Todd who holds me and hands tissues and tries to comfort me, who cooks for me and works hard to bring joy an laughter to my life with silly jokes, songs and who always looks at things positively and is my greatest cheerleader.
-Family that shows me some of my life prayers fulfilled-
—God loving sons, walking their life-paths w godly wives.
—Conquering family disfunction and having a close family.
—Having a loving marriage.
—Having glimpses of joy and peace
-For the funny antics of the birds playing in my bird bath
-Beautiful flowers
-God’s word and promises 
-Food tasting good 
-Dark Chocolate
-Beautifully green vistas in IA farm country-their cat and the horses at camp
-Mountain vistas in MT and grand daughter antics 
-Being able to walk several miles a day (2.5-wish it were more)
-blue sky and cloud pictures
-Being able to read scripture on my phone,  in the middle of the night, in the dark—(not like I used to when I was a kid, with a flashlight)

The Lord is close to the brokenhearted and saves 
those who are crushed in spirit.  
A righteous man may have many troubles, 
but the Lord delivers him from them all.”  Ps37:18-19 

The Lord is my rock, my fortress and my deliverer; 
my God is my rock, in whom I take refuge, 
my shield and  the horn of my salvation, my stronghold.”Psalm 18:2

Have I not commanded you? Be strong and courageous!  Do not be terrified, Do not be discouraged, for the Lord your God will be with you wherever you go! Josh 1:9

Do not be afraid- I am your shield and your very great reward! Gen 15:1 

The Lord will fight for you, you need only be still.  Ex 14:14

Trying to encourage myself...by God’s grace, we will persevere though it is hard!
Thx for praying for me... 

PS I just heard from my integrative doc that my natural killer cell count IS high enough that they could do car-t therapy- however he is not sure that at this advanced stage it will work.....and I would have to have it at least 2 times (they do 4 times in Japan!)
     Thanking God for the miracle that i have enough cells— they have been extremely low 
     up to this point....A miracle! Thank you Lord!
Please pray for wisdom as we deliberate-we need to decide quickly...
And
We have not heard back about moving my August 6 appointment at USC up at all....which means I'll be off chemo for almost 2 months....allowing the cancer to run rampant....

So - do I gamble with this completely new therapy (which is cutting edge and everyone is all excited about CAR-T) or do I wait for USC and go for a clinical trial???? (this is assuming there is some trial available for me...)

Thank you, as always, for your faithful prayers that sustain us, carry us - we so appreciate them! 
Thanks for checkin' in!

Update on my treatment ...

Hope you had a Happy Fourth of July!

Last Friday went smoothly - 

Back to doing supplements regularly, adding in a new one every 3-4 days  

Mouth sores all gone, but still sensitive to hot and cold and spice.

Trying not to lose weight as I attempt to cut animal protein and carbs - quite a challenge - holding at 110

Not much to tell you about the NK cells.  It takes a while to get those results back, not like the regular blood draw for my oncologist, which yields results within 24 hours.  It will probably be pushing 2 weeks - unless, of course, Quest loses my blood draw again....

Meeting with my oncologist was basically her handing me off to the USC doc.  It was very strange- I felt dismissed - and not really reassured...as one friend put it, “ God was done with her.”  So true, but it still felt weird.  

Contacted USC for an appointment - unfortunately, the first available was August 6.  I explained my time challenge and the scheduler said that the doctor would review my records, which the scheduler marked urgent and then the doc would “squeeze” me in wherever he had time.  Please pray that he sees fit to “squeeze me in” sooner rather than later.... 

I have been very pro active about my diet and the supplements that I am taking.  I am organic 97% of the time, gluten free (again) dairy free (ouch! Goat cheese has been my saving grace)  virtually sugar free and I am taking potassium, a thyroid medicine, D3, immunokinoko, milk thistle and lyposomal vitamin C and trying to add in Laetril.  True confessions tho, 

I don’t feel all that great.  

Perhaps you remember when I made the shift to chemo and felt a great deal better than when I was fighting this was with supplements.  Side effects of the supplements are stomach and GI upset.  I have had to stop and start the laetril because I was not tolerating it well.  I feel fluey, achey and tired.  

In addition, without the laetril, my pain level has increased, so that I am taking painkillers 3 x a day on some days, instead of twice a day.  The amount of sleep I get is far beyond what was normal for me before I started this game—I sleep about 9-10 hours plus naps... (used to sleep 5-6 hours)  It is disconcerting to feel like the tumors are growing and I am not “doing anything” about it....even tho I really am....

Tears come easily....

All of this is quite discouraging.  I am trying hard to stay positive - be thankful - be joyful - live life....but sometimes, it is an uphill push....Todd is an encouragement for me, but it is a struggle for him also.  

Thank you so much for supporting us with your prayers.  They carry us when we are unable to walk.  

On another note,  I have been in touch with a Lutheran healing pastor from Connecticut and he prayed for me again.  As I continue this battle, it had occurred to me that perhaps my miracle is getting to live life feeling as decent as I do, while still having the tumors growing.  It is very hard to know and to not get my hopes up.  In the meantime, I am just thankful for the time that I do have —having a finite, short amount of time  is so hard to wrap my head around.   

 Luke 18:1-7 reminds me to not give up.  It’s the story of the unjust judge who still acts justly to a persistent widow because of her persistence...”and will not God bring about justice for his chosen ones who cry out to him night and day?”  God can do anything - praying that it is in his plan to spare me for a few more years- in good health....  Certainly, we are blessed with many who are crying out on our behalf - thank you - Please pray with us that He grants me more time...It is a heartbreaking, tear filled, gut wrenching time.  Yet we fix our eyes on Christ and keep on plodding -  one foot in front of the other - trying to be as wise as possible - seeking comfort and His grace as every turn...

Thx for your persistent prayers.  They carry us!

Thx for checkin’ in!