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


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."


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.

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!!

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...