Thursday, August 21, 2008

Is The Last Mile The Hardest Mile?

If you are thinking you don't know what to say to us, or you can't imagine how we feel, don't worry–either do we.

We are gutted by the news of the pathology of the right tumor. We are already so tired and flattened. We have prepared for the marathon, and have not confused it with a sprint. We signed up for the right race, and did the training. It's just that we were not expecting to see a sign at this point that says '26 miles to go.' We've already run 25 miles. We thought the finish line–some sort of finish line–was just ahead. I was ready to dump my energy reserves on the floor and go for broke.

All we wanted was to get the best results with these surgeries. We wanted to go home with our little boy. That's not what God has in store for us. I am confused and I am hurt. Jo Ann is the same. I am so far gone physically and emotionally I can't access my feelings. I am just blank.

I surely feel love and empathy for Pablo, and for Jo Ann and Grady and everyone around us. Polly, who loves Pablo dearly. Jo Ann's parents Harry and Patricia who are the so dedicated to P and us it scares me. And Francine, who is our sister, our constant companion in the hospital, and is staying the night with P and J tonight. All of you, our friends, and even people who we do not know, who are here reading my words every day, sending loving and encouraging emails to us and posting comments. We love you all–I am not just throwing some weird shit out there, I mean it–and we NEED your continued LOUD support.

But something has shifted for us since Dr M sat down with us yesterday, and again today, to discuss the unfavorable histology of the right tumor. As with anything, as time passes, we will get to a place of deeper acceptance. And reality will fill the space that is currently filled with fear and unknown shit. That's how life always goes, and it's no different with this.

The discussions we've had with Dr M and Drs Stein and Hardy fall into two buckets: the new direction in treatment based on the unfavorable histology (or anaplastic) of the right tumor, and both anaplastic and favorable possibilities in the left tumor, which we'll know by next Wednesday's pathology results. (Let call that side WHAT WE ARE DOING.) The other bucket is the statistical outlook. (Let's call that WHAT'S DOING US IN.) This other bucket is the approximation/prediction game that is the root of all fear but entirely necessary to confront.

Let me start with the treatment aspect, and let's talk only about the left side being favorable histology. This is the official start of our super-positive postulate for Monday's surgery and pathology.

So...as we sit now, the treatment is going to be three or four new chemo drugs, for another 12 weeks minimum. Pablo will also receive radiation for a total of 10 days straight (each weekday for two weeks). The radiation will be highly focused to just the tumor bed on the right side–this isn't a Star Trek transporter type thing. The national Wilms' protocol has just been lowered, so P will receive less today than he would've a year ago–each day's dose will last about 10 seconds.

The statistical aspect is also a sea change, and is far more difficult to accept. It's the thing that has us confused, existentially challenged, angry, hurt, and baffled.

Here it is, in plain English.

When the biopsy revealed that the right tumor was dead (or favorable histology), that was the best possible news. It meant that Pablo was in the 90%+ cure / survival group. Those are odds we loved and rallied around. Our faith in treatment, and, frankly, in life, was shaped like a nine and a zero and a plus sign.

Anaplastic histology cuts the number down to roughly 50%. You know we are NOT naysayers or doomsdayers. But anyone knows 50% is a tightrope walk. One way, you are stylin and profilin. The other, I can't utter the words. This is the place where we need your help. THIS is the time we need your help, your intentions, your prayers to the God of your understanding, or the Universe or whatever you pray to.

We now know that the biopsy was misleading. You might be asking 'how can a biopsy be wrong?' That's a good question, and here's why: Wilms' tumors (I have no idea if this is also the case with other tumors as well) are frequently multi-focal tumors. This means that the big tumor is actually made up of clusters of smaller tumors, each with its own living core and dead outer area.

So, if the surgeon cuts a piece out of a multi-focal tumor that randomly happens to be a dead spot, it will yield a false negative.

If this all sounds confusing, or even cruel, remember that cancer is inherently a system of grotesque, disorganized cells. I was up in the CHLA/USC Med School research labs a few weeks ago and got to look into the microscope at healthy cells and cancer cells. It was immediately clear which was the natural, beautiful, graceful stuff, and which was the Wicked Witch in a Petri Dish. We all know that something healthy is something harmonious, and something broken or evil can be communicated with discordance. This theme is carried out in melody, in syncopation, in the rhythms of life all around us. And if you look up the term anaplastic on that link, it tells you that the word means 'to form backward.'

OK. Jo Ann and I have a 7 a.m. meeting with Hardy and Stein. Time for bed.

I have never said this in nearly 100 days of posts: I appreciate having a place to write about my and our experience. This was one of the hardest posts I've had to write. It's incredibly helpful to know my words are being received by people who love Pablo and us and who are with us every minute of every day through this blog.

When you read this, I ask you a favor, as an energy-building exercise for Pablo's surgery Monday: please tell someone that you love them. REALLY let them know. Look them in the eyes and hold their hands and let them know. If it's hard for you, GO FOR IT! Get out of your comfort zone. That's where life happens. If you can, give it away to many many people on Friday, and keep it going all weekend.

If this sounds corny to you, email me and tell me you love me. I need it.



13 comments:

Kristal said...

Jeff,

I've been off the grid for a couple of weeks. Dealing with some of our own family issues. Will be off again for 10 days starting tomorrow. I haven't been on the computer too much lately. The blog broke my heart tonight. I can feel you guys in the words. Remember that energy NEVER runs out. You and Jo Ann will summon it and you'll summon the highest energy to keep you going through this. I love you guys and I think of you often.

xxk

cheri said...

Pablo,
Thinking of you guys today, sending lots of prayer's and hug's. Praying for strength and peace.
Cheri

Jules said...

We've been sporting our Pablove bracelets and telling anyone who asks about them to pray for Pablo. Sending lots of love and positive thoughts your way...

tracy said...

We leave today for 10 days. I feel like I am going so far away. I am taking all of my prayer objects and all the links to Pablo and you that our family that we have with us to where we are going. I don't want to go. I want to come sleep with you all at the hospital. I really do. Hold each other tight, as we hold you in our hearts. 50% is a tight rope but faith keeps you on it standing tall. I love you guys.

Anonymous said...

Thinking about all of you, always.

LYNN said...

Love and prayers all day, and EVERY day.

Lynn Rush

MKPatrick said...

Dear Jeff, JoAnn, Grady & Pablo,
We Love all of You. Forever. Feel the love, strength and power of the universe. Our prayers continue everyday.
Love & Light,
Mary Kay, Matthew, Luke & Amelia

James O. said...

My thoughts and prayers are with Pablo and your family now, and all the time. I rode my first century last weekend, and when I was bonking towards the end, I would look down at my Pablove bracelet as a reminder of what REAL strength is. In a word, it's Pablo. Keep digging. You WILL make it.

Love and Respect,

James O'Toole

vdingy said...

I love you all. Stay strong and focused. I am here for anything.

Vanessa

Ashman said...

I said mile 20, love that you said mile 25!!!!

Brian said...

I haven't had the privilege of meeting pablo, but i can't wait to. If he has half the piss and vinegar of his old man, we will get along great. In the mean time I am thinking about him every day, every time I look at my bracelet, every time is see a little guy running around. You will get through this, your posts are not corny, they are rad and honest. Bless you all. Brian McPherson

Lois said...

Castelaz! I always knew you'd be a success. You are, in more ways than I ever knew. Pablo is so lucky to have you as a Dad, someone to route for him, to go to bat for him, to go all the way for him. Listen, our family is routing for your family and we will cheer and holler and do the wave until he makes it all the way home. GO PABLO!!
Love, the Keller's

Anonymous said...

i love all of you
you
jo
grady and my mexican baby

kappa