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!