a thrill of hope

I feel like I've been holding my breath for the last couple of weeks.  I had scans on Christmas Eve.  It has been one month since my last scans, and two months since I've had any kind of treatment (last dose of the chemo pill Temodar was in October).  What will my body do on it's own? 

There have been some down-right scared-out-of-my-mind hours as part these very fun and always busy days.

The news is not bad.  Nothing new is showing up, but there is some growth in two of the three remaining tumors.   Brain still clear (somehow). 

After talking to the trial nurse today, I may not qualify for the tumor injection trial after all.  You have to have two tumors to biopsy, one to put the medicine in, and another to compare it to.  I have the one in my armpit which would be perfect.  But the other two near my kidney are about to be destroyed.

We are going to radiate them starting next week.  15 days of radiation, then it's over for them.  Today I got four (very small) tattoos, so they can line up my body correctly every time.  Bragging rights! 

Radiation is where we started my stage 4 melanoma journey a year ago.  This is where I would LOVE to end it.  There is a theory out there that radiation can stimulate your immune system and cause a systemic effect when a person has had immune therapy drugs (the ones I have been given over the year).  That is what we are hoping for here.

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I have been fascinated with hope this season.  As I think about the miracle of Christ and the many gifts of God, I feel hope for everything and everyone.  Not necessariily the kind of hope that everything will be perfect, but that everything will be okay, and eventually goodness prevail.  In all our lives.  I don't think it's ever too late for miracles, for change, for peace.  I really believe that deep down inside and all over.  I will admit it seems easier to feel this hope for others, harder to apply it to myself.  But I am learning.  Cancer has been my teacher.  Cruel and relentless, she has not let me forget her lessons. 

"Believe all things, hope all things, endure all things..."

Simple.  Impossible.  Beautiful.

*****

(I will insert video here when Josh gets home to help me)

James on Christmas Eve playing for me.  Love his little punk attitude playing pretty music.  Love the words to his song:

Good Christian men, rejoice
With heart an soul and voice
Now ye need not fear the grave:
Peace!  Peace!
Jesus Christ was born to save
Calls you one and calls you all
To gain His everlasting hall
Christ was born to save
Christ was born to save

the penciled-in plan

If all goes well...we scan later this week or early next.  Then we radiate the adrenal tumor.  Then we start a trial here at my cancer center that injects a tumor (the one in my arm pit) with IL-2 and IPI.  To qualify my tumor has to be under 2 cm, and last month it was 1.8something.  So it all depends.  Again.

But the funner plan is to have a blast while the kids are out of school.  I am so glad they will be around.  Keep me from thinking too much about my self and situation here.

choose your own adventure

Some thoughts about this disappointment before I pack up and drive the last leg of this trip.

And then I'm moving on.

This is a lose-lose situation.  I lost because I was going to have a great response to this drug (according to me.  I have had a great response to everything they have given me!)  The drug company lost because I was going to have a great response and they could have included that in their statistics.

But rules are rules.  I get it.  The FDA has to be super strict to approve the trials for the safety of the patients.  In order to conduct an experiment the variables have to be controlled.  Yes.  I realize it's tricky to be just the right kind of patient for these things. 

Down the road, I may still get this medication.  When it is approved, for example.  I have asked all the doctors when they think this could be, and they just don't know.  Years most likely.

My doctor in Utah will be opening an anti-PD1 trial here shortly, but of course I don't qualify.

And by the way, Anti-PD is short for anti-programed death.  Enough said.  It rocks.  I wanted it.  I hope hope hope it will be available to me at some point.

I was very shocked I couldn't have it now, but I am getting over it.  I drove all day by myself and stared at the window with no music, very little phone.  Just thoughts.  Most of them hopeful.  I have always thought if things get as bad as they were we could surely just do what worked last time (IPI plus temodar).  And I am thinking that is a real possibility.

It might never get that bad again though.  I think we will radiate a couple of the tumors.  See if that seals the deal here.

So much drama!  So many possible outcomes!  I keep feeling like I'm in the middle of a really intense book and I just can't stand it any more until I know what happens.  I would either skip to the end to figure it out, and then I could enjoy the in between stuff, or I would read all night.  But I can't do either.  I have to put it down each night one page at a time. 

I guess all I can do is fill those pages up with as many happy things as I can.  And trust the Author.

Sunrise at Cannon Beach yesterday

Can you guys tell I downloaded Istagram?  Watch out!  It's pretty fun.

low tide

Feeling much better already.  Walked the beach till dark.  It's hard to be sad at sea level.  It must be the sounds.  Delicious!
 

rejection

It's a no go.  The drug company won't allow those who had toxic side-effects from IPI (that stupid bout of diarrhea).  The study nurse called me last night and let me know they were in negotiations, but it wasn't looking good.  They just called to say that the drug company is not going to budge. 

Back to the drawing board.  The doctor here seems to think IPI again would be a possibility.  Radiation is another option that could get my immune system in attack mode.  I will discuss it all with my doctor in Utah and he will come up with something amazing.  He always does.

I have been spoiled here by my old roommate Natalee.  Her and her darling children have kept me distracted and happy.  I was hoping to be here often, but it wasn't in the cards. 

I think it's time for a drive out to the coast...

so far so good

Passing all the tests so far.  The study nurse said, "The hard part is going to be telling the drug company the story about your brain mets resolving without radiation."

The funny thing is, I was ready to lie to get qualified (I didn't have to, don't worry), but it's the true story that is going to make them wonder.

We do a needle biopsy Thursday and if they approve me, I start the medicine on Monday.

Oregon is just beautiful.

Sunrise this morning.  Bring it on!!

here we go!

Just crossed the border. Had to cure Josh's nausea, so he is coming along.  He just told me he wished he could go on a road trip with me every weekend.  He will fly back after my appointment tomorrow, and I will have a car in case I'm stuck there for a while.  We should know more tomorrow...