Thursday, December 27, 2012

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.


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

Wednesday, December 19, 2012

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.

Saturday, December 15, 2012

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.

Thursday, December 13, 2012

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!


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...

Tuesday, December 11, 2012

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!!

Monday, December 10, 2012

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...

Thursday, December 6, 2012


Yesterday I did everything I could to get to Portland earlier, and it turns out it was enough!  I am going to see them on the 11th, and as soon as we can get everything done I will come back.  If all goes well I could start the medicine on the 17th.  The nurse suggested I buy a one-way ticket and we will see how things go.

In the mean time...I really wonder if I'm losing my mind.  There seems to be absolutly no stability in there.  I wrote down some thoughts I had all in this one morning, all genuine.  Many of them I am not proud of. 

I come out the bathroom and start to get dressed.  I hear giggling by my feet.  I see Luke still as a board except his stomach and chest rippling with laughter.

"I'm....hahaha....frozen to the floor mom.  HAHAHAHA!!  You are going to have to roll me around from now on."

"Well I clearly need a picture of this tragedy.  Hold still!"  That gave him a good laugh.  I love my kids!!!

Why are we 2 minutes late for school everyday?  How come the kids never looked groomed when we finally arrive?  Why did I ever buy the 'comfy' clothes and let them pick their own outfits?  Why do I not make them do their hair everyday?  Why don't they care about their hair?  My children drive me crazy!

I have got to make a list of things to do today, I need to check stuff off so I feel like I am getting somewhere. 

I get on the computer to check emails and house listings.  I am so sick of my house!  We looked at a house close to us, but is it the right one?  Could we even afford it after all the travel expenses and medical bills from the trial?  I have insurance, but I will have to pay the out-of-network prices.  Luckily, the medicine is free.  What if we were in a financial bind right now?  Thank goodness for this silly little house and its ridiculous payment and our crappy van with no payment.  

Or should we get a 4-wheel-drive in case it makes sense to drive up to the hospital every now and then?  That was in our plans for this winter... Josh can't pick up chicks in a minivan if something happens to me!  A little pride please!   I tell Josh about how this idea is bothering me.  "Look...I'll get a new car the day you die."  He thinks for a moment.  "I guess that would look a little weird."  Oh, if you could only hear our conversations along these lines (remind me to tell you some time of the 23 year-old wife option).  There are always funny moments, occasional tears, and they usually end with Josh saying "Can we talk about something else?"  But what else is there? 

A move.  That's what there is.  This week I have been boxing up closet stuff that we won't need till the spring, getting the house ready to sell.  It has been the fun.  And this is saying something around here for the past couple of weeks.  It's kept me busy and Josh excited.  Sam is our handy little helper.  Keeps begging to tape up some boxes.

The kids are ready to move, which is a first for them.  There has always been a big demonstration when we have discussed it before.  I guess that means something.  The house we looked at has a basement apartment that one of my sisters could live in while they save up for a house.  My kids would love that.  And my sisters have little kids which I would love to have around.    

But why am I asking for anything more out of life?  I would always say that it doesn't matter our circumstances (I pictured us living in a trailer park), when Luke graduates from high school and Josh and I are sitting there together watching him, we will be the happiest people on earth. 

But I can't really see the sky from any of our windows!  True story.  And it makes me feel trapped.

And I can't even have people over for dinner here!  How can I celebrate all this good news and good life when we really can't have a good size party here?  I can't even fit my immediate family.  We have friends over and the kids have to go play in the back yard.  Oh wait...our back yard is the smallest.  We have to take them to our park.  And it's not like we live in a big city here, folks, where space is limited.

Josh is going to move any way.  No matter what the wife situation.  Why not help him pick?  His only requirement is some cement to play basketball.  Pretty sure we shouldn't leave the decision up to him.

My tooth hurts still.  Two root canals this last month.  Nothing worse than spending your time and all kinds of money on root canals.  At least the endodontist made it pretty pain free.  It was my first time getting dental work done without laughing gas.  That takes nerve guys.  Now for the crown part.  Dang it!  The dentist thought maybe it was the chemo messing with the nerves?  Easy to blame everything on the chemo.  What other kind of damage has been done from these strange medicines?

My bargaining is not the best (earlier posts can prove).  My prayer from the beginning of the year was pretty simple.  "At least let me try everything."  Of course in the back of my mind I'm thinking if I have time to try everything something is bound to work.  So far we are doing good on this deal.  I would hate to have my kids wonder if something could have been done had I had more time.  Let me get into this trial so we can check this off our list.  Give me the chance!

I think I just can't come up with a good enough offer if His end of the deal is "I cure you completely."  What does my end look like?  There is nothing that big.

It is expensive to travel, but it would also be expensive if I had to pay someone to take care of my kids.  So, as long as this drug can give me as many as extra months as I am on the medicine, we are not talking about a bad deal. 

Morbid math.  Why am I even calculating this kind of crap?

Josh is getting "physically sick" when he thinks about me leaving next week.  Nauseous.  "Come on Josh, we have to to do this!  This is my chance!  This is exciting stuff!"  He knows, he knows.  But we haven't really been apart this year.  We have gotten a little ridiculous about each other.  Over-used the words I love you, that's for sure.  Plus a hundred other mushy and romantic antics that I will spare you from.  How long can we keep this up? 

Suddenly I see the "Warn children of the risk of death by electric shock" tag on my hair dyer as I am brushing my teeth.  Panic attack!  I have never told my kids about this.  What else have I missed?  They will never make it.  The horror! 

A one-way ticket?  Just so fitting for my situation.  I have no idea what is coming next.  I can't plan my next week.  Everything is up in the air guys.  Can I remain sane with all this uncertainty?