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!
 



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...



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

one-way

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? 

Friday, November 30, 2012

trial

 We had a great Thanksgiving holiday.  I kept thinking over and over how grateful I am to have so many reasons to fight.  And I got to spend the whole weekend with the most important ones.

I have been on the phone and email trying to get the ball rolling with the trial I am trying to get into.  Yesterday my doctor (lovely man!) called to let me know he talked with the doctor who is running the Anti-PD1 trial and it looks like I will have a good chance at qualifying.  I have an appointment on Dec. 17th in Oregon, and if all goes well, I will be traveling up there weekly for the first two months, then every-other week after that.  I will do this as for long as I'm responding, with scans every 2 months to check on my progress.  When the drug is approved, I would be able to get it here.  But that could be a while.  The infusion will only take 3 hours or so, so there will not be nights in the hospital, thank goodness!  The side effects are usually minimal.  Just pray for me that I can get on this trial.  It is the only thing that sounds fun right now.

We have had a rough week emotionally with the reality of our situation.  Luckily, it has gotten better every day.  I feel great physically, I feel really good about this trial, and I still have an incredible amount of fight in me.  December 17th can't come soon enough!

Wednesday, November 21, 2012

so...

Because there is disease progression we need to try something else.

The four options we are considering:

1) A trial they are doing to inject the tumor itself with IPI and IL-2.  This is a phase 1 trial, so there is no data on effectiveness.  But in theory, it could work.

2) BRAF inhibitors (Zelboraf).  I really want to save this till the end (a good percentage of people respond, but the effects are usually short-lived).  Doctor agrees.  Try to get another immune response first.

3) Look for an Anti-PD-1 trial around the country.  They took a quick look and there might be one in Oregon recruiting participants.  Because we got the cancer out of my brain (still gone, by the way!) I may qualify.  These trials are hard to get into, but they will call around an see what we can do.  This drug is similar to IPI, without the bowel side effects.  A very promising drug.  I would want to try this now while I have a chance of qualifying. 

4) Radiation and continue the Temodar.  This is not a bad idea.  In fact, it might be risky to take me off the Temodar (which we will have to do with any of the other options) if that is what is keeping it out of my brain.  If I can't get into a trial, I think this is my next move.  For now the Temodar is on hold until we find out about the trials. 

I did cry some big tears this evening.  Ginger kept licking them off, despite my protests.  Dumb dog!

I got over it pretty quick and got into research mode.  Josh put the kids to bed.  Luke tucked me in (he does this when he can tell I'm too tired to tuck him in).  We are looking forward to a long weekend, and then we should be able to get a more definite plan together. 

Overall, I am not too sad about the results.  What can you throw at me at this point that I can't beat down?

Results

Kind of what I suspected.  The tumor near the rught lung is gone. The other three tumors have grown a bit. After discussing options we are going to look into getting into an anti pd1 trial somewhere in the country.  So it looks like the fight continues.  More later....

Wednesday, November 14, 2012

countdown

In one week we scan again.  I am entirely creeped out.

My faith a little shaken in the events with my sister.  Lighting can strike in the same place twice.

Predictions?  I think the tumor by my diaphram is gone.  Shortly after last scans I had an awful pain, like a knife cutting through my lung, every time I tried to take a deep breathe.  I would breathe in, then scream as I got to a certain point.  It freaked us out, but only lasted like 4 days.  I am hoping it was getting big as my immune system prepared for attack. 

I think I feel the one in my right arm pit.   You have to dig, but it does seem to still be there. 

But who even knows?  This is all just crazy.

I am assuming if there is nothing new, but we can still see the cancer, we will continue to treat.  Either with just the Temodar, or radiate the remaining tumors.  If we have new growth, IPI again?  A trial?  I don't really know.  I am only now considering these possibilities.  I have felt so dang good, had so much hope.  We slipped back into 'normal' life so quickly and easily.  The kids have been so fun, Josh so happy.  We have been only talking and acting like I am going to be around for a long time. 

But now as we get closer to knowing, I'm not so sure.

And so, I am letting myself be nervous this week.   I took the kids to school this morning then climbed back into bed.  Hiding from all the frightening things that are happening out there.  Using this one morning with nothing on my calendar to take some deep breaths.  To search for some more strength. 

Probably won't find any under the covers though, huh?

Friday, November 9, 2012

life is good

That was to be my next blog post.  I was going to write it on an small island of Puerto Rico.  After a day on a white sandy beach.  Tired from playing in the waves.  Nothing but time.  The Caribbean Sea in front of me.  I was going to sit in front of a computer and type out the latest.

I dedicated last week to getting my house ready to go.  Writing up and planning the kids schedule for the babysitters.  Shopping for food and packing.  Reading review after review about what we should do when we were down there.  After a week of prep and anxiety (this is the first trip I've had major doubts about), Friday night I was ready to go.  It finally sounded fun.  Our plane was to leave at noon Saturday.

Saturday at 6:15am the phone woke us up.  Too early.  Maybe my sister had her baby!  My sister who has had to put her oldest boy through chemotherapy is getting another boy!  My sister who loves her babies in a way I never understood.  The sister I talk to almost every day.  She was scheduled to have a c-section near the end of my trip (yesterday).  I was planning on being home by the time she left the hospital.

Josh hopped out of bed to get the phone, then handed it to me.  It was indeed Sonja.  But she was crying.  "They told me I'm going to have a stillborn.  There is no heartbeat."

And so, later that day she delivered her beloved little boy.  We got to see her before the surgery, and not long after.  We got to hold her little baby's body.  He was beautiful.  Daniel Robert Blodgett

Life is good?  Absolutely.  I think this is the biggest reason I am so incredibly sad.

At church on Sunday I wanted only to cry.  After the first hour I walked home though our park.  Yellow leaves dotting the pathway like petals thrown before a bride.  I looked up in the sunshine to a brilliant blue sky as a warm breeze rushed through my skirt.  The skirt that moves so beautifully around the ankles.  The trees were shedding, and in front of me the skinny leaves were spinning rapidly from high up down to the ground.   I jumped to grab them with my hands in a game similar to catching snowflakes on your tongue.  If anyone would have been watching, they would have been quite amused.  But I was alone.  In the middle of all of fall's beauties.  And although I admit to being easily overcome during this kind of an encounter, I was especially stricken at that moment.  Could there be a better heaven?   Baby Daniel will not be here with us to enjoy this kind of day. 

His graveside service was today.  It snowed and hushed the world around us as we said goodbye.  "The heavens are crying" I told her kids as I drove them to the mortuary to see their brother for the last time.  "Crystallized tears" Steven (an incredible mind) added, looking out the window.

Yes, I wish I was on a beach today.  But not because I care at all about the beach, but because if I was there it would mean Daniel would be here, and this horrible week would not have happened.

 Life is good.  And so terribly heartbreaking.


Daniel's siblings

my sweet sister

crystallized tears

Wednesday, October 17, 2012

:)

I am sorry for the break in updates.

These last five weeks have been the longest I have gone without seeing a doctor this entire year!  It feels so good.  I will go again next week to chat, check blood work (we have been watching blood counts because of the oral chemo), and pick up another round of pills.  Last month's dose was no big deal, only one day of puking, otherwise I felt just fine.

I continue to look for signs of cancer, but they are just not showing up.  When I count the weeks since that one dose of IPI...almost 18?!  Is this possible?  Scans will be mid-November.  I can only imagine we will see good signs again.  Why not?

Physically I feel incredible.  The only thing I seem to suffer from is nightmares.  All involving cancer.   Most of the time it is a general knowledge that the cancer is back.  Low lighting, scary music, worried exchanges.  But there are also very specific dreams that wake me up, heart racing, feeling for that exact spot I dreamed up a tumor.   I have always been affected emotionally by my dreams (ask Josh how happy I am with him the morning after I dream he cheats on me).  And this is no different.

I go to bed invincible, and wake up vulnerable and scared.

Such is my life this year.  There is no middle ground.  Nothing has been lukewarm.  The adjective doesn't exist.  All or nothing.   Sickly or robust.  Live or die.  Heartbroken or euphoric.  We live in extremes. 

We are right now in a state of extreme happiness.  It involves my normal, everyday life that I wanted back so badly.  It is mostly dishes and laundry and shuttling and motivating kids.  Occasionally reading novels, lunch with friends, exercise, home improvement.  It involves taking trips and making commitments.

And the best part?  It includes planning for the future.  Something stolen, now returned.  A trip this fall.  The kid's Christmas presents.  A move in the spring.  The possibilities!!!

I will try and blog some of the fun we have been up to.  But just now the boys are about the walk in the door.  Homework, piano, karate, dinner, scouts.  Luckiest mom ever.  You get the picture.

Friday, September 28, 2012

"I think we're really right on the edge of something really, really big"

So what do my scan results mean?  What does a response to the IPI really mean?

Watch this video.  It's the guy who developed the drug (he's my hero right now).  A lot of it is technical, but listen to the things he says that are easy to understand.



Isn't that cool?!  He was curing cancers across the board in mice.  Not just melanoma.

The first human trial participants were given just one dose (sound familiar?) and it produced three objective responses.  One of the ladies is still around to chat 10 years after that dose.

What does this mean?  This means I have a chance for a long-term response, guys.  A chance!  It's the very thing!

This means Death, if he has been hungry for me, is going to have to starve for a while.  This drug is giving me time!

This means the world to me, really.  I know I'm not out of the woods yet, but I have reached a clearing, and I very well may find myself on the other side someday.  We don't really know, "We are in the middle of it."

My boys now pray every night, "We are so grateful for modern medicine."  Followed by, "Please bless that all of mom's cancer to go away."

How 'bout it science?

Sunday, September 23, 2012

hello world!

I am sorry to keep quiet for the last week.  I have written a few posts, and maybe I will publish them now.  But each time I typed I thought, well that's not really the latest.  That's not good enough for today.

How can I describe it?  Like I have been born again, really.  Resurrected from the dead.  

For example, last night I went for a run.  I had a loose, long-sleeved, thin shirt.  On the way home, the wind was blowing just so to make ripples in the sleeves up the entire arm.  It tickled and made me laugh, wild with delight.  I have worn that shirt quite often.  But it has never thrilled me before.

That is the latest.  This kind of thing happening to me throughout the day.  I am just so excited about being here.  It is an incredible way to live!  Like a newborn.  Wide-eyed and grinning. 

Thursday, September 20, 2012

factors

As you can imagine, I have been very overwhelmed this last few days.  I have cried more than ever.  More (way more) than when we have had bad news. 

I remember that first day in my current doctor's exam room.  His kind eyes behind thin rimmed glasses, his head cocked above his red bow tie.  Just finished telling me the treatment plan.  Just answered my questions, including "So how do people usually die of this?"  He said something I keep thinking about.  His nurse and social worker were standing behind him, leaning against the counter taking notes.  "How is your support system?"  "Awesome."  I answered easily, squeezing Josh's hand.  "Both of our families are close, and our neighborhood is very close-knit.  I have a ton friends.  They are the very best." 

"Good."  He sat back in his chair a little, the others smiled.   "Statistically, having a strong support system is as powerful as anything you can do, including any kind of diet you can put yourself on."

I don't really know why this makes a difference.  Is it the stress you have taken away (cooking, cleaning, babysitting, driving), giving my body the strength to heal instead if worry?  Is it all those people, that I know and don't know, telling me I am strong on my blog, and I let it go to my head and started believing it? 

It has to be some of that.

I recommend "The Emperor of all Maladies" to those curious about cancer.  It explains, among other things, the theories on how cancer gets its start in your body.  The conclusion is, if I remember right, that it is a combination of factors: intrinsic, extrinsic, genetic, that give cancer its beginnings.

It is a combination of factors that is going to give my cancer its end: miracles, magic, luck, medicine.  And a most important part of the equation: YOU.

And of course, how could not give credit to my Heavenly Father?  Prayers of thanksgiving going up to heaven constantly.  With God, all things are possible.  Isn't that beautiful?

I take no credit for this victory.  And that, my friends, is what makes me cry.  And cry.  I am so full of gratitude and love! 

Friday, September 14, 2012

Many Thanks!

Thank you so much for all your sweet words of congratulations and encouragement!  It has meant the world to me!  So humbled that I have been thought of and prayed for by friends I've grown up with, and others I haven't met yet. 

Josh tears up every time he reads a comment.

I haven't been able to sit still this week.  Josh and I are headed out for a little weekend adventure.  I am hoping to clear my head in the clean air, and wear myself out enough to rest.  And then I can type up some of my thoughts.  All of them super positive.

This is such an exhilarating part of the journey!  Hallelujah!!! 

Tuesday, September 11, 2012

have you ever heard a miracle sing?

Strange, it doesn't even need words or music.

The nurse practitioner came into the room with the biggest smile on her face.  "Good news?"  I ask, as my smile starts matching hers.  "Yes, just read it."  She handed me the print out from the radiologist.

MRI Brain wwo Cont

"Just skip to the end."

IMPRESSION:

Interval near complete resolution of enhancement associated with multiple metastatic lesions.  Very faint residual enhancement associated with a right frontal parafalcine mass.  No new enhancing lesions, acute ischemia, or hemorrhagic metastases.

Me (kind of tearing up): "So this is uncommon, yes?" 

Her: "This like...never happens." 

She hands me the other report.

PET CT Whole Body

Again I skip the bottom.

Impression:
1.  Marked interval improvement suggesting treatement response having demonstrated between 50 and 100 hypermetabolic lesions on prior imaging, now demonstrating 4 hypermetabolic lesions.  Lesions include a right adrenal nodule, nodule superior to the right kidney, anterior mediastinal nodule, and right axillary node.
2.  Increased activity withing the right maxilla consistent with periodotal disease.  
3.  Multiple small metastatic lesions demonstrated on the prior MR of the brain are too small to characterize by PET.

You read that right.  4 tumors left.

She pulled up the scans.  The organs (heart, bladder, kidneys) are lit up too, but the little dots are cancer.

June 22nd.  Cancer everywhere.  They aren't even counting the tumors, 50-100 seems like a broad range.  Pretty devastating.

Miracle.  September 10th.  4 tumors remain.  This is not a great thing to have, unless you looked like the first photo.  Pretty incredible!

"I wonder if the guys reading these scans are thinking "What are they giving this girl?"  We laughed.
 
We laughed!!!

Although they can't predict what happens next, we are hoping my immune system will continue to take care of the cancer.  We are going to keep up with the Temodar, and eventually even get me off of that and see what happens. Scan again in 2 months.

We begin living that next chunk of life right now.  So excited!!

ps  
By biggest hope was to get to drive again (mostly because it would mean the cancer was gone in the brain).  I didn't honestly think it was a possibility.  Today I really wanted to take a road trip, but Josh keeps reminding me it isn't a practical week for us (alright, it is his birthday tomorrow after all).  I guess we aren't in hurry any more! :)

Alisa - behind the wheel!

Alisa is ready to drive straight through to California. I have to remind her about, school, piano recital, soccer, karate, kids, and a dog.

More details to come.

- Josh

Monday, September 10, 2012

lead thou me on

A big day at the hospital.  Head-to-toe PET/CT scan and a brain MRI.  Six hours of what used to be torture (being poked, holding still, waiting around), really wasn't so bad today.   During the MRI they played some choice music, including some of my favorite songs of all time, and I wondered if the radiologist will read a smile on my face.  It was there the whole time.  With no medication in the bloodstream but the radioactive tracers and contrast dye.

And I even have the patience to wait till tomorrow for the results.  No problem.  In fact, I could wait a week without wanting to know the news.  But come tomorrow it will.  And who knows?  It's anybody's game at this point.  Right?

I used to think of upcoming scans as brick walls.  Unbreakable, cold, impossible obstacles preventing me from planning a day beyond them.  We have lived in these three month chunks (which will now be shortened to 2 month chunks, by the way) with barriers at both ends.  The wall is broken down only by getting through the day they tell you the news, and then you can see what the next chunk should be filled with.  Treatment, sickness, fear, joy, hope?  Then you can plan.  But only to the next wall. So you see, you are always trapped.  With no end in site. 

But tonight I am reshaping that image.  I am adding a door.  When you plan a garden (I remember hearing on some garden show, P. Allen Smith?), you create 'rooms' with a little teaser entrance into the next space.  An opening that intrigues and lures you to another place, with a different design and feeling.  So behind the door that is tomorrow is just another place that I get to enjoy after loving the space I left behind. 

"Keep Thou my feet; I do not ask to see
The distance scene, one step enough for me."

Enough cheese.

Trying not to read into the fact that it is September 11th tomorrow, and the forecast calls for rain, wind, and thunderstorms.  Yikes!

I nailed an old horseshoe we found when we were building this house above the front door to counter my superstitions.  We have come up with a few fun stories about its origins (Butch Cassidy rode through these parts after all).  I will walk under it tomorrow on my way to the hospital while throwing some salt over my shoulder, crossing my fingers, and saying a prayer.  And maybe someday the legend will conclude that the woman who found that horseshoe, a hundred years later, turned out to be a very lucky woman indeed. 

Not super likely.  Stay tuned...

Thursday, August 30, 2012

doctor visits

Blood work looked good yesterday.   The doctor said I looked great.  Not to brag, but most people tell me that. :)  It's a little crazy, you would never know to look at me.

I had lots of questions for the doctor, but figured we will know more in a couple weeks after the scans.  I had the dates wrong, I will be scanned on the 10th and find out results on the 11th.  This was a relief, as Josh's birthday is on the 12th (the day I had it in my schedule) and as superstitious as I try not to be...well, we just weren't excited about it being on a birthday this year. 

The doctor did clarify that if we were at a point at needing more IPI, we could do the testing again and see if that would be a possibility.  I was very relieved, as I'm pretty freaked out I would loose my mind if I felt another tumor.  Knowing there was a medicine out there that would help it, and I couldn't have it.

So far, though, I do not feel more tumors.  Just one stubborn tiny one on my rib that has not changed. 

I took one of each of my anti-emetics last night with the Temodar, with great results-no nausea!  Slept through the night.  Just a little sleepy now. 

The plan:  I get to reduce the Temodar to every 4 weeks instead of every 3.  We will scan every 8 weeks after this next scan.  We still have radiation as an option if the brain mets persist.  We may be able to qualify for an Anti-pd1 trial if we can stabilize the brain.  We still have the braf drugs in our back pocket. 

Take-home message from the appointment was that we still have time and options left.  So grateful for both!

Tuesday, August 28, 2012

beggars can't be choosers

One week of school behind us, and it was not what I had planned.

There might have been a few fights over homework with one child.  Yelling-at-him, threatening-him kind of fights.  I have had to put myself in timeout with the child.

Another child is in this pre-teen stage that is so foreign to him, and to me.  A little "Why should I?" on the side with anything I ask.  "Why?"  Constantly.  Like a two year old,  minus the cuteness.  Not acceptable. 

I also had my first argument with Josh (the kind that produces tears) in I don't even know how long.  Maybe 2 years? 

I have been dreaming of moving.  Bugged again by the size of my yard, the cramped closets, the same old view.  Things I swore off ever complaining about again. 

Even though I've gotten a bunch of random things done this week, I look around and feel like I have nothing to show for all my extra time.   

In short, I am getting frustrated.  Which feels very...normal.  Like I used to feel.

When I realized this it made me smile.

And frown because...aren't those lessons permanent?  Don't I get to keep that perspective?  Are my days still going to be hard if I live?  I never really considered this.  It has been so easy to say that I truly just want life itself.  But I don't know, the longer I'm around, the more I'm demanding.  For whatever reason, I am needing more these days than to just feel good.

And I do feel so good.  I even went running this week for the first time since they radiated the cancer in my bones (January).  I didn't get very far, but I felt no pain.  I think I now know what it feels like to win a race.  Victory in every step.  Couldn't stop smiling. 

Tomorrow I see the Dr. and start the chemo pill (Temodar) again.  Hovering over the toilet is a great way to get a little perspective back. :)

Tuesday, August 21, 2012

leftovers

Today I put on my bravest face as the boys walked into school.  I will miss them every day.

Luckily, we are on an early track and they are dismissed at 2:15.  Just enough time for me to exercise, shower, clean up the house, make dinner, work on the computer projects I have planned.  Maybe even read and write with time left over.  Sounds kind of lovely, doesn't it?

Last year Luke started 1st grade and everyone was curious what I was going to do with myself all day.  I was for sure the most curious.  But it turned out I did mostly the same stuff, but with no little dudes around.  Super lonely!

Days like this, I have to wonder if what I told them is what I've taught them.  I hope they are kind to the world even when I'm not there to prompt them.

We woke up to presents on the door and a back-to-school banner on our window.  There is only one woman who can get her kids out the door, herself ready for work, and pull off a good deed before 8am on the first day of school.  Had to be Steph Fugal.  As James put it, "Who else would it be?"  We are so spoiled!

Kids, if you miss the bus, grab your helmet, cause mom can't drive you to school anymore.  Actually we are planning on biking as much as the weather permits.

 
And the weather in the morning right now is so FABULOUS!  The sun coming up over the mountains...yum.

Ginger normally follows me around all day.  Not today.  She stared out the window with her saddest face all morning.

You and me both, baby girl.

Tuesday, August 14, 2012

no ipi for me

Things rarely go as planned it seems in this business.  Luckily, I have been stretched so much this year, I am pretty flexible.  If I wasn't I might break on a day like today.

Yesterday 2 pm:  They took me off of the schedule for the IPI infusion.  The tests we were waiting for came back yesterday.  Neither with good results.  The biopsies taken in the colonoscopy showed inflammation and necrosis (is that what she said?) in the bowel.  The calprotectin (which measures inflammation in the bowel) is 7 times the normal limits.  I was very depressed. 

I try hard to plead my case for more IPI.  I am asymptomatic (no diarrhea), have been off steroids now for over a week, and most importantly...THE DRUG IS WORKING.

Yesterday 5 pm:  They put me back on the schedule for 12 today for the infusion, while they looked into the case more closely.  I hope all night.

Today 11 am:  I got the phone call that I will not be getting the infusion.  Too risky.  Bowel is being eaten up by my immune system.  If I understand it right, the normal flora it contains is being attacked by my immune system, which now has no limits.  The risk is eating it away so much I develop tears or holes in the colon.  We give IPI again to an angry immune system and in some cases, can't control it after that.

Still.  After the IPI, I am down to really one drug (the braf drugs).  And it's usually only effective for x amount of months.

Josh and I have had a hard time with this back-and-forth.  I prayed all morning that the right decision would be made.  I have to believe this is the right decision.

I have to now put this into perspective.  I have to trust that what happens after all I can do is in Bigger Hands.  I have to remember that although one dose may be all I get, it may be all I need.  I have to remember that I needed something to work fast with my brain involvement, and that is just what I got.  I have to believe that if my immune system is still attacking my colon, it is fighting the cancer too.  I understand that another dose or two would not necessarily cure me anyway, or help more than just one dose.  And another dose could do irreparable harm, could kill me faster than the cancer.

I cram these thoughts into my mind to keep other bad and depressing thoughts out. 

I have another dose of Temodar in a couple weeks, and then we look forward to the big scans come Sept. 12th.  Hoping, always hoping, for the best!

Friday, August 10, 2012

surprises

Tuesday night equaled anything I have faced.  I was glad my house is so small, my toilet so close to my bed.  Violent vomit.  All. Night. Long.  "Temodar!" I yelled in between the stomach wrenching, "You better be working!!"  I have changed my antiemetics around since, and it is helping.

Wednesday evening I had to start my bowel prep for the colonoscopy.  14 days worth of laxatives down in 10 hours.  Up all night at the toilet again.  And while I am in a tell-all mood, I also might have pooped the bed.  Not much, but what?!  I think I was so stinking tired from not sleeping the night before, I just couldn't wake up.  Holy crap, my kids have never even pooped the bed!  I woke up Josh (the world's soundest sleeper) laughing my head off, making him get up to roll off the sheets.  Had to finish my drink concoction starting at 3 am, to be at the hospital at 7.

The GREAT news is, the colon looks just fine.  He took some biopsies they will test, but couldn't see any damage.  I haven't talked to my oncologist, just waiting for a couple more tests to come back, but I would say we have a great chance of continuing on with the IPI.  I'm feeling really happy that!

Strange mix of miracles and disasters over here. 

This afternoon has been quiet.  The kids are playing with their cousins.  Josh at work.  I wondered what am I going to do with an afternoon all by myself?  I checked the calendar.  Which led to a minor panic attack: 11 more days till the kids go back to school!

It is going to be a hard transition.  They have been so much fun, and no work at all at home.  I have considered pulling them out for a while and home-schooling.  But it doesn't feel right.  My original plans were to try and keep them on as normal a schedule as possible, and I need to stick to it.  Besides, they love school.  Nothing better than having them rush in, slam the door, drop their backpacks where they don't belong, and tell me something exciting that happened that day.  Nothing better than being there.  I feel so lucky I get to get them ready and send them off to school.  Really didn't know if I was going to be able to do that this year.

So very grateful.

Tuesday, August 7, 2012

delay

Talked with the Doctor today before my IPI infusion. He doesn't know the best course of action to take here. Should we give another dose and risk some life-altering/life-threatening complications?

We decided to do a few tests this week and see what kind of damage we have done, then decide if we should give the next dose or not. I am at the eye center right now (I have had a little blurry vision, but the eye Doc is saying things look okay). I will have a colonoscopy Thursday and if it looks good, we will do the IPI on Tuesday. If there is significant damage to the colon and we don't do IPI on Tuesday, we will not be able to do the IPI again. We would just hope for the best, scan in September as planned, and go from there.

I really want another dose, but I understand. When the oncologist is hesitant (these guys will take you the brink of death to get rid of the nasty cancer), I listen.

Sigh.

 I asked if the IPI could work with just one dose, and he said it is a possibility, but in the studies that were done half of the patients got all four doses.

Josh is feeling really good about this plan. He has been worried about the next dose. I have just been prepping for a very ill couple of weeks, so I'm a little thrown off. I will start another round of Temodar tonight, which will make me sick for the week. But nothing like I was prepared for.

I will keep you posted. Hopefully our decision will be an easy one when all the test results come back.

Monday, July 30, 2012

looking good

Things are going so well. Down to two tumors I can feel. Nothing new has popped up. Incredible.

This is my last week of steroids. I have an IPI infusion scheduled for the 7th. One more week to play and feel great. I will take it!

 Overwhelmed that this medicine is working. I seriously can't believe it. I am trying really hard not to get my expectations too high (we have seen mixed results before, and a response does not mean a complete, or a long term response), but it is extremely difficult. I am saturated in hope.

We scan again in September. I didn't even know if I would be around in September.

Just so happy to be alive. It's that simple. Joy everyday.

We had some pictures taken early this summer at our house. Thanks to Emily Blodgett for the make up and hook up, and thanks to Jess Curren for the lovely photos!

Monday, July 23, 2012

it could be worse

I haven't been reading much the last 6 months. Haven't had the attention span required for a novel.

But this week, it was time. Time to loose myself in another's perspective for a while.

I skimmed my color coded bookcase for the right thing. Something new?  No.   Maybe something very familiar. I touched and considered some of my favorites.  In the whites: Enchanted April, The Glass castle, Tale of Two Cities, The Gurnsery Literary and Potato Peel Pie Society.  No... The Blues: Peace Like a River, Anne Of Green Gables, The Joy Luck Club, all of Austin.  The greens: Anna Karenina, Little Women, No. 1 Ladies Detective Agency, To Kill a Mockingbird, Harry Potter.  The Yellows: The Secret Life of Bees, Dandelion Wine, Shakespeare, My Antonia, The Poisonwood Bible, Watership Down.  Reds: Life of Pi, Huck Finn, Three Cups of Tea, Battle Hymn of the Tiger Mother.   Hmmm. All lovely.  But not quite....for what could be my last read...  And then, my eyes froze in the browns. The Hiding Place. I read it as a teenager.  It changed my life.  I found it at our thrift store last year, and forgot about it.  A beat up old paperback. 

I think I stopped there because I keep telling myself "Well, it could be worse." I tell myself this often and have wondered why in the world that should give me any comfort. Surely the fact that the situation could be a lot more complicated or serious does not make me feel any better? Certainly the fact that others have suffered FAR beyond anything I have does not give me a sense of peace?  Why then, do I get some comfort in knowing that indeed it could be worse (you don't have to have a great imagination here as everything but the cancer is so wonderful right now, there are many possibilities)?  

The Hiding Place is a memoir of a family in the midst of the Holocaust.  As dark of a situation as it gets.

Two sisters (Corrie and Betsie Ten Boom) from Holland are sent to a German extermination camp.   They would suffer unimaginable treatment.  And yet their Christian faith lets them live beyond the suffering.  It helps them find joy, and most importantly, their faith helps others.  It is truly inspiring.

The last words of Betsie, dying in the most inhumane conditions (where nintey-six thousand woman would die), were, "We must go everywhere.  We must tell people that no pit is so deep that He is not deeper still.  They will believe us, because we were here."

And so, this was the perfect selection for me.  I needed to be reminded that even in the worst case scenarios people walk out, heal, move on.  God will give us the strength to carry on.

This week was hard on the country as we learned about the Colorado shooting.  I read this viral blog post by one of the survivors.   I thought it was well said.

If I try to make sense in all this chaos, I get confused.  Even the faithful Ten Boom sisters had their moments of despair and doubt.  I try to remember that I don't need to figure it out, I just need to trust that God is good enough to triumph over all the tragedies that happen to us.

I needed that message.

Thursday, July 19, 2012

foram samuel

I found this on my nightstand as I was getting ready for bed.
All his money. I rushed into Sam's room. He was already sleeping. I kissed and thanked him, just the same. Love his sweet little heart.

I sleep tonight the richest girl in the world.

Tuesday, July 17, 2012

bulllet proof

Had a great visit with the Doctor today.  I couldn't wait to report all my tumor shrinkage (and more importantly that I have felt nothing new pop up since we saw him last).  I felt like a child with a new trick for his parents.  I had one especially ugly tumor near my right arm pit.  You could see the black tumor through the skin.  It was so ugly.  I thought I would never be able to wear a swimsuit again.  Well now it is a tiny round ball.  So small I don't know what to compare it to, maybe a seed?  All other tumors shrunk or disappeared.  The back stabber-GONE. 

And guess what he tells me?  He says he thinks it's the IPI that is working!  He says the Temodar is not that potent of a chemo to respond so quickly.  What?!

If it is possible to feel bullet proof and completely humble at the same time, it was me, then, there.

But then the trouble was explained.  I have to get off of steroids before I can do another round of IPI.  I tapered down this week (started taking half the dose) with maybe not so perfect results.  If I can't get the diarrhea under control without steroids I could loose my chance at doing IPI again.  Very real possibility with the reaction I had. 

At the Huntsman Cancer Institute.  "Fire away, fire away.  I'm bulletproof, nothing to lose
fire away, fire away
ricochet, you take your aim
fire away, fire away
you shoot me down, but I won't fall
I am titanium
you shoot me down, but I won't fall
I am titanium."
 
I keep singing that song.  I start the Temador again tonight.   And hope so much that in three weeks I will be able to add IPI to it.  Because dang it!  It's working!

technical difficulties

I have been trying for an hour to rearrange the pictures on that last post, but something is wrong with blogger.  Hope to resolve that so they make sense, but in the mean time I need to post about the doctor visit today....

Monday, July 16, 2012

performance inhanced life

The steroids!!  What a difference!  My mind and body are just racing with things to do.  I have been planning parties, cleaning out cupboards, creating to do lists and actually getting them done.  Steroids are AWESOME!

This week included (but was not limited to):


Thursday, July 12, 2012

p.s.

Ginger is recovering well.  She has a look in her eyes now, a little too wise, a little too sad.  The kind of depth you get with a brush of death.  Welcome to the club big girl.

equilibrium

It's a balancing act, really.

Cancer kind of simplifies life in a way.  You get down to the basics.  And it complicates things.  You have to learn new tricks. Tricks they can't teach you in a manual.  You have to think differently.  You have to talk to people differently.  Delicately.  You have to weigh your options.

To live like I am going to die, or die like I am going to live? 

Most people are not comfortable with me talking either way.  I am not exactly comfortable with either.  I guess the easy answer is I might die soon.  I probably will. But what does that future do to the present?  It all seems a little warped.  There must be a middle ground that can satisfy both options.  I pray to find it everyday.  I try to find the right words to say.

But there are no words.  There is nothing right about this situation.  It doesn't feel good.  It's not fun to talk about.  It's not easy to think about.

It doesn't fit me.  Especially, it seems, around the neck.  And so I am always tugging and pulling.  

I have struggled with the brain met issue.  This is not something I can ignore.  Can't leave it out of the equation.

When I was first diagnosed with stage IV, I asked, "So, how does melanoma actually kill you?  Does it get so big in your organs that it causes them to fail?"  The Dr. said death usually occurs because of uncontrolled brain metastasis.  Thank goodness I didn't have any of those, thought I.


I felt, I have to be realistic at that point (the 25 brain mets point).  We were very up front with the kids.  Luke kept telling me, "Mom!  Don't tell your kids that kind of stuff!"  And maybe I shouldn't.  But I would hate for this to come as a super shock.

I seem to get a little peace out of working out a plan (the nanny idea did not go well with the boys, we have finally worked out what we think is a great arrangement, should Something happen).  I guess I would rather be prepared.  Trying to, again, walk that line between realistic hopes and...as I'm typing this I'm wondering what 'realistic hopes' are. 

The thing is, I am also prepared for a miracle.  No work required there (or do I need more faith?).  A heart is always prepared for a miracle.  It would be so easy to fit into this story.  It goes along with everything I said, and believe.  It matches everything I wear.  It would be the most becoming addition to this pretty existence. 

So, when the kids still pray for all Mom's cancer to go away,  I let them.  Let them lean to that side. 

And besides, my tumors continue to shrink.  Like crazy, even.  I realize it is most likely the workings of the chemo (temodar), and its effects are short term.

Still.

It does seem at the end of a day (especially a summer day)  I find myself loving my life.  Despite the bad parts.  It is not to scale.  The good, every time I think about it, outweighs the bad.  The surplus is astounding.  I love the very body that is attacking me.  The things that are breaking my heart I cherish above anything.  The kids that have to hear and consider some really hard stuff...they are thriving.

The world is a beautiful place.  And here I am.  On two feet.

Sunday, July 8, 2012

an interesting night last night

We had the chance to go to my my nephew's Make a Wish Party.  Remember we were worried he would choose Yellowstone?  He made the best decision and chose Hawaii!  Make a Wish is a pretty neat organization.  I would encourage you to donate whenever you get the chance (sometimes the grocery stores will ask for a buck or something at check-out).  I think the whole experience, from deciding on a wish, the anticipation of the trip, the trip itself, to the happy memories he has forever were just what Steven and other childhood cancer fighters need.

Steven has been a great example to me.  He has been so stinking tough.  He has moved past cancer and is full speed ahead.  He does not let his amputation get in his way of anything.  I am so proud of him!

Unfortunately, we had to leave early because I was hurting.  I was paying for the few bites of pizza that I just couldn't resist because remember, I'm starving.  Bummer.

It is a good thing we came home.

We walked in the door and received the usual over-the-top greeting from Ginger.  We took her to run a couple errands with us, and got home in time to do a few things in the yard.  Ginger was at our heels the whole time.  We came in when it got dark.  Ginger acted like she was going to throw up, so we sent her outside.  A while later (maybe half an hour?) Josh called for her, but she wouldn't come.  I was stepping into the bath when Josh found her, brought her in and said, "Does she look normal?"  Her chest was doubled in size, she frothy at the mouth, and had painful look in her eye.  Josh touched her belly and she whimpered.

I remembered reading about a stomach complication with large, deep-chested dogs.  I read poodles were susceptible to the stomach turning and trapping air (GVD, or bloat).  He was looking numbers up on the computer, I told him this is an emergency, she needs an ambulance, and he was the ambulance, so please go now.  He was talking to the vet hospital on their way out and they were looking for the closest 24 care for us, because if it was a stomach issue, time was a concern.

I don't know if the steroids have started giving me mood swings or what, but as they drove off I lost it in the bathtub. 

It was there that I offered the sincerest prayer of my life.  Over that dumb dog!

Heavenly Father, please don't take our dog!  This family needs Ginger.  I am counting on her if something happens to me.  She has been a special furry glue for our little family through the last few years.  She is our common ground.  She is our only therapist.  She is Josh's little shadow and Sam's little sister.  She is my big girl. 

Love is what makes you happy (This is the biggest truth I've learned).  She is literally a huge source of happiness for us because we all love her so very much.

Josh texted from the vet hospital.  The Dr. said if we don't do something she will die.

We can't afford to lose her now. Are you kidding?  We can't deal with any more loss in the family.  We lost our cat a few months ago (I will have to find that post and publish it).  It was so hard on us.

We had no choice but to let them do the operation to turn her stomach around and staple it to the chest wall so it hopefully doesn't happen again.

After the bath, my tears and eye-wiping had produced a mess of mascara on my face.  Through my tears, and without my contacts, I searched for the make-up remover pads.  They weren't in the normal place, so I searched everywhere, and I was happy to finally find them in a separate cupboard further away.  I rubbed my eyes and surrounding areas, and felt an immediate sting.  Or are these my make-up remover pads?  On closer inspection, they turned out to be hemmorhoidal pads!!! 

Poison control got a call from some weird lady with some pretty crazy excuses for making ridiculous decisions.  Oh, the humiliation! And to think of the all real poisons that I have put up with.

For the record, it did remove the make up.

I keep giggling about it today.  And Ginger may be home tomorrow, so all is well.   The steroids are for sure starting to do their job.  I ate dinner tonight!  It might have only been a peanut butter sandwich, but I was the happiest person on earth.  Food!!

I am grateful today for answered prayers.  And that witch hazel does not cause blindness. ;)

Friday, July 6, 2012

retreat!

I have been waiting to feel better to post a hello and all is well. 

We have had a rough week.  I was tired the days after chemo.  Fatigued.  I think it was caused by the Temodar.  Sunday I felt pretty crummy, and thought I could cure it by a walk in the mountains.  It was beautiful, but I felt no better.

Monday we added some serious cramps and diarrhea.  Josh notes here that I really am living my worst nightmare if I have to talk about my bowel habits.  I am pretty private.

I called and reported what was happening on Tuesday and they had me go directly to the the acute care clinic.  On our way out the door I noticed our beautiful mountains that we were just enjoying covered in smoke.  Heartbreak.   We got some IV fluids at the hospital, and of course ran some tests.  We have been hoping that this was bacteria or viral caused.

We just got the results and unfortunately, I am turning on myself, and have developed colitis as an immune response.

I started high dose prednisone (a steroid) today, and will taper off weekly for a month.  And then we can do IPI again.

I pressed hard to make sure this is the right course.  I asked if there was anything else I could do, if I could try and wait it out, if it would possibly go away on it's own.  She said no way, I needed steroids now.  I guess my lab numbers that test for this are very high.  In the IPI trials, the untreated colitis sometimes ended up in bowel perfusion, and this is what killed people. 

The thing is, a steroid to stop the inflammatory response is opposite of what the IPI is trying to do.  A steroid suppresses the immune system.  I am trying to boost it.  It's not like the steroids mean the IPI will not work.  But it can't be helping.

Yesterday it rained all day in the valley and up in the mountains.  I took it as a sign.  I felt my target tumors.  The largest two are half their size.  The smallest have not gotten any bigger since we started this last combo drug.  And I don't know if it's the IPI or the Temodar (more likely, as IPI takes a while to work, but then again, it usually takes a while to develop colitis too), but the cancer is responding to something. 

And so, we are a bit discouraged by this little delay in our plan.  But honestly, I can't live like I am for long.  Everything is going through me.  I don't eat at all during the day, because if I do I cramp like nothing else, and I find it undigested in the toilet.  I am drinking gatorade and feeling like that should do it (a sugary drink, against every cancer diet, but what can I do at this point?).  I can drink about 2 160 calorie jugs a day, which I could survive on for about...?

I don't really like the story problems I'm dealing with lately.

So steroids it is.  In a month I can do another round of IPI.  So we won't be too behind the schedule, and we get to take the Temodar as scheduled.

They say I should be feeling good in a couple of days. 

Not ideal.  But we are far from the ideal situation here.  At least I will be able to eat.  I'm starving!!!

Wednesday, June 27, 2012

how this is going down

Starting today.

Listen close, cancer. 

My T cells, they know what to do.  They proved their awesomeness.  We have spent the last four months training the immune system with IL-2.  Training the right cells to pick up your scent.  And destroy.

We let them have a taste of you.  We let them eat tumors whole.  Large ones.  In one week.  Gone.  All gone. 

You took advantage when we quit the IL-2.  But don't assume it's your advantage now. 

Cause guess what?  We have been holding back the attack cells this whole time.  Ha!  Today we introduced into the body Ipilimumab. 

You see, we all have brakes on our immune systems to prevent autoimmune diseases:  We only let our T cells go so far.

IPI is a molecule that takes those breaks off.  Lets the T cells work without the normal restrictions.  

That is what we injected into the veins this afternoon. 

We are so coming after you. 

With the ferocious T cells off of their leashes.

Ready boys? 

SIC 'EM!! 
 



p.s. and tonight we add a chemo pill to start your pain.  It is so deadly I have to wear gloves to touch it.  But I'm swallowing it and sending it straight to you.  Gulp!

p.p.s.  if you ever, you know, want to surrender, I'm totally cool with that.  Totally. 

Tuesday, June 26, 2012

through the years

I opened up  my old blog on my last post. 

There are a ton of things I would like to edit.  But I am leaving it original, because that is who I was back then.  It's good to see a change I guess.  

*I was worried sick about the lymphedema in my leg!  I am so over it now.  The swelling has been very manageable.  I also can't believe surgery stressed me out.  Ha!  I love surgery!

*I got a lot of things medically wrong on my first diagnosis.  I am sure I am still giving misinformation here, I am just saying it how I understand it now. 

This section is especially for my melanoma friends who will know the terms I'm using here.  I didn't ask to see the pathology report from the original mole that was removed.  Which is totally ridiculous of me.  If only I had gone on google and typed in the word 'melanoma' I may have figured out what to be worried about.  But, last year I read the report. The biopsy was sent to 4 or 5 pathologists around the state before the final report was written.  One line reads, "These are some of the strangest melanocytes I have every seen."  Not super reassuring.  It recommended only having USCF unravel the DNA to see if it was melanoma.  The report didn't have a depth associated with it (the UCSF report did, it was at least 2.5mm).  It was also a shave biopsy (note to everyone who is having suspicious moles removed, insist on a punch biopsy so if it turns out to be melanoma they can see the depth and get your stage right).   The UCSF report said "Thank you for sending this interesting specimen..."  I thought I had nodular melanoma, because that is the closest thing I could find to what my mole looked like when I searched for images (it was pinkish and tall, it grew in a couple of months, I thought it was a wart), but I later found out it is under the microscope that they determine what kind of melanoma you have, and mine was a spitziod melanoma.  I assumed my dermatologist was in the wrong for not acting quicker to get a node biopsy.  I realized after reading the reports, he was only doing what was recommended.  At a depth of 2.5mm it likely had already spread to the lymph nodes.  Of course I would have demanded being super aggressive at first, if I would have known how horrible the cancer is.  But I don't think anyone was at fault.  They were very odd cells.  From my reading, determining between a benign Spitz nevi and a spitzoid melanoma is very hard.  The Dr.s have also told me this was unlikely caused by sun damage, because of the type it was.  I have my doubts, but there you go.  I need to do some more research on spitzoid melanoma for sure.

*I loved my life with little kids at home.  I wish I would have written down more of what they said, and what we did.  I am starting to record what I remember of them since they were babies.  I will hopefully finish with that this week while they are at a karate camp in the mornings.  But my memory of those days is so limited.  I wish I had kept a better record. 

*The old blog plus this one does not represent how my life since 2007 has been, really.  I stopped blogging in 2009 and every time I thought about starting back up again, I thought I would only be bragging.  Josh keeps telling me, "We have had the best few years of our lives."  And they have been.  Full of adventure and love and hope and appreciation.  Our marriage had never been so perfect.  Our children were not old enough to be too cool for us.  We were surrounded by good people that we love.  Josh loved his job.  I loved my life at home.  We had cancer behind us, and nothing ahead to slow us down. 

Those two years in between my blogs will always be remembered as our favorites.  Too bad I didn't keep better record.  I could have kept a private blog to brag on, couldn't I have?  Anyway, I just wanted to make it clear that I have not been sick and worried for 5 years. 

*Some posts that might summarize the blog:  we learn that my mole was indeed melanoma, hearing the bad news that the cancer has spread, treatment plan, how I felt during treatments, one of those chemo days, the boys take advantage of my weak mental state and acquire a puppy, an all time favorite song, the end

Saturday, June 23, 2012

grounded

The Doctor eased into the bad news a little better than I did for you here.  He was professional and kind when telling us what were up against, and what we were going to do about it.

IL-2 produced some pretty amazing results, I don't think any tumor that was there at first (in January when if popped up everywhere) is anywhere to be seen.  Nothing on the bones is 'lighting up' on the scans, and the liver spots are almost not there.  Strangely, there is really nothing new in any of the organs, except the most important one.

It has been 4 weeks since I did IL-2, the washout period you need to get into a clinical trial.  I was really hoping that I would have those options.  Brain mets (I will be using that term lots, short for metastasis) in this quantity pretty much disqualify you for anything.  Our goal is the get them stable (prove they aren't growing) so we can qualify for a trial down the line.

To do this we are going to start early next week with IPI (Yervoy) and Temodar.  Temodar is a chemotherapy that has the ability to cross the blood brain barrier.  It may (I don't know the odds here, 20%) help keep the tumors under control while we wait for the IPI to kick in.  IPI normally takes 12 weeks to work (I'm not an expert this is just what I am piecing together).  From what I have read, the median survival after being diagnosed with brain mets is 3 months.  Yeah, not so great math.  And usually you are talking a few brain mets, I don't know the statistics on 25.  The temodar effects only last a short time, but maybe enough to give time for the IPI to start working.  We are hopeful that because I had an immune response to the IL-2, that I will have another with IPI.  IPI does not cross the blood brain barrier, but if you can get your immune system to go after melanoma, the T cells that attack can get to the brain. 

Braf drugs.  Would be an option right now, but while the mets are so small, and we know my body can fight the cancer, we are waiting till the last minute for that one.  I would rather do treatments that have a lasting effect (IPI) while I can.  The Doctor thinks the Braf drugs work in about 40% of brain met patients.  So there is not even a guarantee there.

I was strong during the explanation.  Mostly I was shocked.  Really, I never thought it would be this bad, this fast.  I started crying only when I asked about driving.  Seizures are a common symptom of a brain tumor (although he thinks I won't have symptoms yet, with tumors this small).  He recommends I do not drive until we get this under control.  If I were to seize while driving I could do harm to those I was driving, and those in my path. 

Yup, I'm grounded.  For life, really.  And that is the what made me cry.  Not the 25 tumor in my brain part, or the probabilities part.  Not when they pulled my PET scan up and showed me all the little places around my body the cancer was hiding, or the side effects of the drugs part.  Not even when I realized that this is such a long shot.

Just when they took away a little freedom.

I am a pretty spontaneous person.  I don't love to plan.  My favorite mornings are always when I wake up and get an email from google calendar that says "you have no events scheduled today."  I don't like to plan a trip, really till I'm there.  I like to go to the grocery store and just see what inspires me.  I love to drive my kids up to the mountains.  I love to get away by myself in the car and blast country music from the 90s.

Sure, I can get along without a car.  I know everyone will help me.  It just stung.  And it changes things now.  I will rely on friends and family until we can get a nanny hired.

*****

Friday morning, right before all this happened, Josh woke up at 5.  He propped his head in his hand and stared at me for 20 minutes before quietly slipping off to work.  "I loved it.  You looked so beautiful." 

I woke up a couple hours later and rushed to get out the door to be at the hospital on time.  But I froze when I went to brush my teeth.  I saw someone who would soon meet her greatest fear, times 25.  I had no idea, but it seemed like my mirror image knew something.  She looked like a warrior princess waiting to attack.  Beautiful and calm.  Full of determination and strength.  "You can do this" she told me.

I was reminded of the day I learned my cancer had spread.  5 years ago.  A similar recognition and encouragement from the girl behind the glass.

I have never seen that pre-cancer girl again.  Although it would be fun for a while, I do not want to be her.  I want to see the warrior woman who has fought and conquered.  And I want to see her for years and years.

Tonight.  Hard to believe I am anything but healthy.  No symptoms.

Friday, June 22, 2012

something wicked this way comes

What's worse than a brain tumor?  How about TWENTY FIVE brain tumors?!  I didn't even know that was an option.  It seems very extreme, and the Dr. says not common.   

It is bad (really bad).  But not hopeless.  I will start IPI (Yervoy) next week in combination with the oral chemo Temador.  Explanations to come, but now I need to catch my breath (and change the laundry, and water the flowers, and feed the kids).