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!