Thursday, April 30, 2009
The family thing is a sidebar - the results wouldn't have bearing on P's treatment - but there's something to be learned from it if one of Dr M's theories proves to be true. He is looking to see if Dean, Pablo and I all carry the P23 gene, which is a common thread in cancer traits among first degree male relatives.
A bit more background on our family's history with cancer - specifically tumors. You know that our older brother, Scott, passed away in 2004 at age 39 after an 18 month battle with cancer. I've talked a lot about that. We also have an older half brother, Bill, who is now 48. He is our dad's only child from his first marriage. You know how people were back in the late '50s. Wild. Into motorcycles and bowling and gettin loose I wasn't there, but I've watched enough 'Happy Days' to know.
Anyway, in 1973, when Bill was 12, he had Glioblastoma - a giant tumor the size of an orange in the left side of his brain. It was removed and found to be benign. Bill received 40 radiation treatments and returned to normal life. The tumors never recurred but Bill suffered a series of three strokes between 1981 and 1993. His physical abilities never fully recovered.
That my brother and my son both had cancer was categorically scary to me. It's had me thinking - a lot. Earlier in Pablo's treatment, Dr M felt that P's cancer was unrelated to Scott's and we didn't talk much about it. Because we didn't grow up with Bill (he lived with his mom and is 11 years older than me), I never even thought to mention his brain tumor to Dr M in our earlier family history discussions. In fact, I didn't even think to mention it yesterday. Jo Ann said it.
The fact is, Scott was the keeper of these kind of facts in our family. He and Bill were only four years apart, so Bill was a true older brother to Scott. When Jo Ann and I told Dean about this, he called our Dad back in Milwaukee and got some of the facts. Next call was to our uncle Donald, then Bill's mom in Kohler, WI. Within 15 minutes, the dude had the whole medical history nailed. Amazing.
So, today, after the healing circle, we dropped in at CHLA to start this tangent of our family's journey. Out blood will be frozen until Monday's Fed Ex shipment to the lab that does these studies. Next time P has a blood draw, they'll pull two extra vials and send his to the same place.
Fascinating. Scary. Let's see where this leads us.
Wednesday, April 29, 2009
March. I actually asked for a Healing Circle on the night of March
13th. That was exactly one week before Pablo's last round of chemo.
I had called Dr. M and asked for scans and told Jeff that I had a
feeling something was up... seriously, instinct - that's all. I spoke
to some of you about it, too. Dr. M explained in very logical terms
why a scan at that moment wouldn't change our course and convinced us
to wait. He was correct in his reasoning, we would be right where we
Since, that night on March 13th, my friend, Carrie, has been
diligently working on organizing a circle - before P's last round of
chemo, before his terrifying stint in the PICU and before his end of
treatment scans which yielded the news all pediatric cancer families
live in fear of. Well, could the timing be better? The Healing
Circle is tomorrow and we all plan to be there, including Pablo.
I am re-posting Carrie's letter below. We would love to see all of
you, and for those unable to be with us physically, you can join us
through prayer, thought, meditation, etc.
There will be a Healing Circle for Pablo at The Awareness Center
This Thursday, April 30th, 1:00 pm
This Circle is for anyone and everyone who is feeling like doing
something for Jeff, Jo Ann, Grady and Pablo. This is an incredible way
to help and...Create A Miracle!
Intention: Exchange fears, doubts, and uncertainties for faith. Faith
can convert disease into health. There is a law of faith which has to
power to bring into life whatever we need. We are all in contact with
this power, we need to consciously use it now...for Pablo.
2801 E. Foothill Blvd.
Pasadena, CA 91107
Tuesday, April 28, 2009
As you can see, we didn't get out of CHLA this morning. Good news is, Pablo, Jo Ann, Patricia (the overnight crew) Polly and Dean will be home within the hour.
Fred and I just left my phys therapy appointment. We're hittin Zankou Chicken to get nutrition for the troops. Here's to a SWEET night at HOME!
After a full day and night at CHLA, I had a rough night with my back. I'm staying home today, taking it easy. I'll see my little boy when he gets home. Later today, I'll also see the magical acupuncturist Allison King and my equally gifted physical therapist Joy Torbett.
This week, SSPU and Eulogies will move 700 people in a venue two minutes from our front door. And the words and chords will blast away in Pablo's honor, but not in his presence—he'll be fast asleep as the two bands from the gang known as Dangerbird let the world know that cancer can't hang out round here no more.
Tickets went on sale at 7 p.m. Monday and sold out in 20 minutes. We hope some of our Pablog friends got some of those tix. Either way, you can read all the details about the show here.
Monday, April 27, 2009
We are hoping to head home tomorrow.
The node that Dr Stein removed from P's lung is in the CHLA pathology lab. When the test results are available, Dr Mascarenhas will sit down with Jo Ann and I.
Ben Berry from Dangerbird is delivering a late Malo dinner right now. We're all hungry. And tired.
That's all we have. Good night.
Oh, PS: while Pablo was recovering, Thursday night's Silversun Pickups / Eulogies Pablove Foundation benefit show at the Echo sold out in 20 minutes! That's gotta count for SOMEthing! All that energy....
Our little angel made the surgery hall separation easy this time. He fell asleep on his own while waiting in the pre-op. As he slept, Jo Ann, Grady and I leaned onto his bed. We kissed his head, whispered prayers into his ear, and let the moments pass. I quietly sang the first half of David Bowie's 'Life On Mars' into his ear. Couldn't remember the second half.
Sometime in the middle of all that, Dr Stein explained the procedure to Jo Ann and I, and made an ink marking on Pablo's side. I signed the surgery consent form. Dr Stein's team of top-notch assistants, nurses and anesthesiologists filed in one after the other, each explaining their aspect of the procedure. Even though we've been through five or six other surgeries, I appreciated the detailed info. The care and consideration from Dr Stein's team allowed us to jump from one moment to the next, one foot in front of the other, one step at a time.
Dr Mascarenhas popped up to see us in the pre-op as well. Of course, his presence made us feel secure. He is our guide.
Jo Ann and I are breathing in...and exhaling....and inhaling....and exhaling....
We are ALL in spiritual commando mode.
THIS IS THE DAY WE'VE ALL BEEN PRACTICING FOR. TODAY IS MISSION: PABLO. AND THERE'S NOTHING IMPOSSIBLE ABOUT IT!
Random scenes from our home this morning:
• Grady is staying home from school today to be with us at CHLA. Jimmy is dropping him here soon.
• Dean and Pablo are playing cops n robbers. They are laughing and jumping around. It sounds like the best, most perfect pop song ever. I don't want it to end. And I want it to keep playing over and over and over. Pablo's laughter creates a magical tri-tone melody.
• I just woke up from a post-breakfast nap. My body demanded that I return to bed. I know why: it's going to be a long, long day. That said, woke up this morning almost entirely pain-free. It's miraculous. I got out of bed all by myself. Going to get acupuncture from Allison at 12:45, so that I am in the best possible shape for our 2:15p CHLA arrival time.
• Jo Ann's mom Patricia is helping keep everything moving and everyone motivated. She is an expert at this.
One last thing:
A few minutes ago, Jo Ann put her face in her hands. She was looking at her computer. It was one of those moments (all too frequent around here) where I couldn't tell if she was laughing or crying. So I asked her. She was crying. She was reading an email from her friend Tina Carter—an old, old friend who was at one time Jo Ann's assistant. In the email, Tina recounted a scene from 1996 when Evan Bernard, one of Jo Ann's directors, had thrown an extreme request at Jo Ann.
Here's what Tina said:
You may not remember this but when I was your grumbling assistant there was this time when Evan asked for us to find him a blimp...as in a Goodyear Blimp to shoot something...I think the budget was about $3k and I was scoffing as usual and you were like, 'Just try...make the calls...etc.etc.' I'm paraphrasing...but basically you were like, 'Anything is possible! Don't be a lame quitter!' And for some weird reason this has stayed with me for years. It always reminds me of the hope I have that all the mundane tasks add up to something bigger and better...as surely they do. So thanks for that small gift of wisdom from a long time ago and all the wisdom and strength now. LOVE Tina
Sunday, April 26, 2009
Uncle Dean continued to be a source of physical and emotional strength, lifting me in and out of chairs and cars. Last night at the Silvas' house, he helped me in/out of four different chairs until we found one that worked. Today, Dean's gentle strength helped finish our outdoor living room on the deck outside Grady's bedroom. Jo Ann and our dear friend + interior designer Arianna bought the furniture and materials for this space weeks ago but haven't finished due to the constant pull of Pablo's treatment. We were all so excited to see the space come together that we hung out there in the late morning sun and talked. Pablo and Polly ran around in the back yard. It was awesome. The perfect, idyllic prelude to tomorrow—the single most important day in our journey. Relaxing in the sun felt great and we'll look back fondly on that hour in the coming week.
When everyone else went inside, Dean and I meditated together. Powerful stuff. With emotions running in the red all week, we both felt the need to release some unwanted old skool energy. Usually you need a federal permit to release into the atmosphere so much toxic waste from the 1980s. It wasn't ours anyway—the stuff we expelled belonged to other people in a galaxy far, far away known as the south side of Milwaukee. We let it go with compassion—we hold no grudge against anyone who hurt us back then. Our only goal is to be free. Our only goal is to be in the here and now. But, still, sometimes 1985 comes knocking. And sometimes 1985 needs go get knocked the F out! The theme in our house today was to get with the here + now and surround Pablo with warm, protective light. We have been good at this since the day of his birth. Now, we have to be nothing short of perfect at protecting Pablo.
After Kidrockers, my acupuncturist came over. She is my new favorite person in the world. Her name is Allison King. She is a warm, soft spoken woman who makes me forget my fear of needles and brings a soothing sensation to me just by talking and listening to me. Today, we talked about bike racing and communicating with our spouses. Pablo came in and counted the needles in my back, hands, shoulders and scalp. I heard him count to 15 and tried not to freak out. What would the point have been anyway? The needles were already in and the damage was already being undone.
A few minutes after Allison left, my back felt 100% better. I can now stand and sit without help. I can almost get in and out of a car without aid. I sat in a meeting for 65 minutes this evening. Miraculous. And just in time for game time tomorrow at CHLA. I keep getting evidence that I'm the luckiest guy in the world. And the only reason I need luck is to help my boy + my family. Without them, luck is useless. I felt so good physically that I took Dean + P to 31 Flavors for ice cream.
We're off to bed. P has to eat brek at 7 a.m. and can drink only clear liquids until 11 a.m. Dr Stein, his surgeon, called Jo Ann this evening to explain the details of the procedure. We're clear on what's gonna happen with the arthroscopic procedure (I got it wrong the other day, calling it laproscopic) , and after all the times Pablo has gone under Dr Stein's knife, we have complete faith in him. Like Dr M, he has become family to us. We will check in at 2:15 p.m. tomorrow. Pablo's surgery will start sometime between 5—7 p.m. Pablo will recover in CHLA for at least two days. We are not sure when the pathology results will be available. We will update the blog and Twitter constantly tomorrow as things update and progress.
Saturday, April 25, 2009
We had a few guests—Francine, Rachel+Clint+Jonah. I was pretty doped up much of the morning and early afternoon. Jo Ann and Dean sat me down and told me they were scared at my zombie-fied state and the unpleasant attitude that was coming along with it. Jo Ann told me she was scared that I was having a nervous breakdown. When she said 'scared' she looked scared. There was not a metaphor in the room when the words came out of her mouth. I thought really hard about whether I was having a breakdown. I had no idea. I sat and stared at them and told them I had no idea what they were talking about. I really didn't. But I knew enough to know they weren't making it up. And although I have a great deal of experience in being a jerk, I do not have much current experience with my behavior toward other people when I'm on drugs. So I shut up and listened and let them mirror my behavior back to me. It felt like a giant mess. I was so doped up I couldn't even cry. Just thinking about it sickens me. But it's over.
After that tough love convo, they took Pablo to Larchmont to buy toys, and I stayed home to meet my new acupuncturist Alison King. She was amazing, compassionate, interested in my pain and recovery. The needles didn't freak me out. They couldn't. The pain is too great to worry about a few little needles. Because I can't lay down or sit down, I leaned against the railing on the back deck and she popped needles in my shoulders and hands. Tomorrow, we are going to venture into sticking my back near the affected area.
After that we went to see Peter and Brie and Lennon. We were on the way to dinner at John and Shana and Jesse and Jake's house. Peter's family from Palo Alto are in town. His parents Irv and Sukie, his sister Anne and her husband Horacio and their boys were all up in the house. It was great to see all of them. We've felt their love and support from afar for the past year (it's been that long since we've seen them) and it was nice to feel it in person.
John and Shana made a delicious dinner of farmers market goodies, and home made lemon ice cream sandwiches for dessert. Damn, I could go for one right now. The conversation ranged from John's busted up ankle (skateboarding accident) to a bunch of other topics that I can't recall cos I was standing, in pain, trying to find a way to sit down. After 90 minutes of trying, I found a chair in their den that didn't put me into excruciating pain. Dean moved it into the kitchen and I joined the party.
Pablo and Jesse and Jake kicked it hard core, playing with stuffed animals, looking at J+J's hamster and watching 'Yellow Submarine.' It was nice to see Pablo playing an running around.
Pablo's Monday surgery hangs heavy in our minds. Of course it does. We are in no-holds-barred territory here. Dr Mascarenhas is with us every step of the way, and is in communication regarding Pablo's latest scans with all the leading oncologists and researchers around the world. He has told us from day one that he is open to such collaboration. Today we are standing at ground zero—that statement is no longer a theory, it's a reality. Dr M has been in contact with us, by email or by phone, mulitple times a day. We love him. His quest for the best treatment of our son is unlike anything we've ever seen or heard of. He even reviewed my shoulder and back MRIs this evening and called to discuss them.
Sunday, we are planning to go to the KidRockers show at the Echo on Sunset Boulevard. Sounds like a lot of our friends are bringing their kids to the show. If Pablo's up for it, it'll be a lotta fun.
Peter's band Eulogies and Hrishi's band The One AM Radio are playing tomorrow at 1 p.m. at the Echo as part of the KidRockers series. We are planning to bring Pablo to the show, and we'd LOVE to see you there!
The show is totally geared toward kids: low volume, short four-song sets, kiddie quizzes, and an 'ask the band' segment' where kids get to ask the bands anything they want. And there's food—the famous New Orleans-themed NYC spot Two Boots Pizza has just opened next door to the Echo! They open at noon.
KidRockers starts at 1 p.m. sharp, and ends at 2:30 p.m.
The Echo is located at 1822 Sunset Boulevard 90026.
There's plenty of free parking in the public lots behind the Echo.
Tickets are available in advance for $9, or $12 at the door.
Spread the word + see you there!
Friday, April 24, 2009
We are on for the biopsy on Monday afternoon... I have visualized all of the spots GONE and doctors scratching their heads. Clear intentions fellow warriors - NO CANCER.
We love y'all and are so so grateful for all of your amazing words of hope and faith and encouragement and support and love.
Now, THAT's what we wanna hear!
Pablo is walking into the nuclear lab for the start of his bone scan. Everyone, PLEASE focus your energy on CLARITY in P's bones. This is an AFDI alert!
In a bizarre twist, I am standing at the radiology check-in desk doing what Jo Ann and I have done dozens of times for Pablo. Cept this time, I'm signing myself in. Strange. And cool. The women behind the counter were a bit confused about a PAPA signing in. Once they found my file and realized I wasn't crazy, they both laughed their a**es off!
The world is a safer place with two
Castelaz characters behind thick lead walls for the next few hours.
Thursday, April 23, 2009
After 48 hours of sorrow and confusion and walking into walls we have jumped off the Pity Express. It hurt when we hit the ground and tumbled to a stop. We held Pablo in our arms to protect him from the impact. When we opened our eyes, we were OK. The sun was shining on us. The air was calm and warm and nurturing. We were safe. We are safe.
As we stood up, we realized that we'd landed on a safety net made up of two thousand arms from a thousand friends, family, neighbors, colleagues, and people we don't even know who've found us on the net or through friends of friends. To feel supported and saved—a miracle. To know with every cell in our bodies that nothing can stop us—NOTHING—a miracle.
We have the baddest, toughest, most lethal goddamn gang anyone's ever seen. Nobody's gonna let Pablo get hurt. We're at the front of the line, chains and bats in hand. Pablo has a cowboy gun belt, a holster on each hip, two shiny silver guns, a pair of handcuffs and a pair of shackles. He ain't bringing no recycled butter knife to a gunfight. Look at that kid. He's armed up to the teeth. Look around—everyone's here: Jo Ann, Grady, Polly, Jimmy, me, Peter + Brie, Dean, Matt, Adam, Hrishi, Ben, Acacia, Francine, Dorrie, Sean, John + Shana, Rachel + Clint, Helen, JMJ + Corrine, Tony + Joanna, Dr Mascarenhas, Dr Marcio, Dr Stein, Dr Austin, Doug Ulman and the Lance Armstrong Foundation crew...the list goes on and on. And the list includes YOU and YOU and YOU and YOU. Thousands of YOU, all over the world. Who nations reprezentin? Check this: Antwerp, Paris, Berlin, Sacto, Sydney, Toronto, Montreal, Melbourne, Manchester, Milwaukee, Minneapolis, Madison, New Orleans, Chicago, SF, Seattle, Philly + Portland, Toyko, Albuquerque, Dublin, Jersey—and not one, but all five boroughs of the NYC.
Our gang is so big we're organized in battalions—neatly formed lines, ready for action. The brain power at our disposal is unmatchable. Our collective soul power is radiating heat that would scare the sun into a permanent eclipse. We are vulnerable, emotional, authentic cos we know that those are the three main ingredients to actual human interaction. Everything else is for everyone else.
That said, we are a peaceful gang. We have only one mortal enemy—the unfair + unjust + invisible outlaw known by the name of CANCER. When it comes to this conflict, we shoot to kill. But the first tool in our arsenal is not a gun or a bat or a knife. What we got is far more powerful than some man-made fighting device. We laugh in the face of such crude objects. Our weapon of choice is comprised of love, intention, collective consciousness, action, connection, truth, authenticity....
And we have a special protocol to wake these inert elements, to make them actionable. In order to explain this protocol, I have a short story to tell.
The other day, I was chatting with Cliff Burnstein, one of Silversun Pickups' managers. We were talking about our shared ethos in biz and in life. We hit on a wonderful term that fits into the Pablove story so perfectly that I'm compelled to share it here. Cliff told me about a friend of his, a high-end business guru. This man has a maxim that he teaches his people—something that sits at the top of the list of all the cliches and easy-to-remember sayings that most people walk around saying. It's a maxim that, lo and behold, Cliff and I live by. And it's a maxim that WE (as in you + us) have all been living for the past 11 months and six days. Wanna know what it is? It's pretty intense, so get ready.... Ready?
Here you go:
Actually F***ing Do It.
A.F.D.I.—pretty easy to remember, huh? That's our secret protocol.
In order to live in the world of A.F.D.I., you have to live by one simple rule: stop talking about s**t and DO IT. Very simple. Very rare.
In the world of Pablove, at this very moment, we all have to put our AFDI into high gear. We have to turn our hearts and our minds and our bodies to contribute to our lives, the lives of others, and to goodness in every shape and every form. We all contribute to hope and possibility and kinetic positivity by suiting up and showing up, ready for action.
Part of my AFDI is to say that we are throwing a couple things in the toilet, right now.
The first thing to go is NUMBERS, statistics, predictions, and all that. The only number we're living by is 1—as in one day at a time, one moment at a time, one thing at a time, one simple action makes a long-term, huge difference. Now is another form on one. Now is the only thing that we can truly affect in life. So let's cut the fat and focus on now.
The second thing that's going down the hatch is darkness. My last post was filled with fear, sorrow, doom and gloom, all of which thrive in darkness. That's not me. It's just where I was in the hours following the news. But I am done with it, and Jo Ann won't have it. So it's done: no more darkness. Not from me, not from you. The only comments we want to see on the blog are words of Love and Hope and Dreams. Not that we're censoring you, but yknow what I mean.
Enough about that stuff.
Here's the latest: I am standing at the front desk of the MRI/CT department at CHLA. My laptop is on the counter. It's the perfect height for me—can't sit down, can't bend forward. My back is not happy. I have what's called a transverse function fracture. Adam drove me to my first physical therapy appointment today. It hurt, but it made me feel like I was doing something to get the recovery show on the road. The PT, Joy Torbett, is a friend of my cycling coach, Rick Babington, so we were fast friends. Adam sat with me as I wept in pain and helped me when I needed it.
Jo Ann just walked out of the MRI lab. After three hours of waiting, Pablo is knocked out, in the giant MRI machine having his brain scanned. He hasn't been able to eat all day. He did not like that. When he gets out, he gets to choose where he wants to eat, anywhere in LA. Grady and Jo Ann fasted with him. I can't cos I need the nutrition to heal.
Uncle Dean arrived this morning. I was sitting in my Lazy Boy in our bedroom, and suddenly Dean was standing in front of me. So cool! Our army is getting stronger.
Tomorrow morning at 9:30 a.m. we are due back at CHLA for Pablo's bone scan. And at 9:45 a.m., CHLA radiology department will have a special patient: ME! While we were waiting for Pablo's MRI to go down, one of Dr M's colleagues, Dr Marcio, stopped by to say Hello. He is part of Team Pablo—he's become a good friend, and is one of the world authorities of Wilms' Tumor. He's also a cyclist, so I filled him in on my crash. I asked him, half-jokingly, if there was any way for me to get my MRI here at CHLA. I offered to pay cash, whatever—anything to not have another hours-long medical appointment in creepy Beverly Hills. To my surprise, he said, 'Let me go and talk to someone.' A few minutes later, he introduced me to the head of radiology, who gave me the green light. So Friday morning, I will don a CHLA gown (and will probably look like David Lee Roth in his assless chaps), and have my brain, shoulder, and spine scanned. The whole thing will take two hours. I'll get to bring a DVD and watch it in these super cool virtual reality-style goggles.
We're in the recovery room with Pablo now. He is still asleep. He looks so precious, so cute. And we can see his new adult front tooth perfectly. Homie better wake up soon—I think Grady's about to eat a Styrofoam cup!
There will be a Healing Circle for Pablo at The Awareness Center
This Thursday, April 30th, 1:00 pm
This Circle is for anyone and everyone who is feeling like doing something for Jeff, Jo Ann, Grady and Pablo. This is an incredible way to help and...Create A Miracle!
Intention: Exchange fears, doubts, and uncertainties for faith. Faith can convert disease into health. There is a law of faith which has to power to bring into life whatever we need. We are all in contact with this power, we need to consciously use it now...for Pablo.
2801 E. Foothill Blvd.
Pasadena, CA 91107
Wednesday, April 22, 2009
It's the only post I've never finished or published. My rule is that I don't edit my writing, and I write straight through, publish and walk away. If I did it any other way, I'd still be writing a post from July. On April 13, there was a computer glitch when I went to upload what I'd written. I thought the entire post was lost, so I never published it. Turns out half the writing was lost. But some of the good stuff re-appeared in my drafts folder.
This evening, when I sat down to write about the day's events, I saw went back and re-read this post, much of which is about faith. It jumped out at me. We talked a LOT today about faith. So, for the first time, I'm serving up leftovers on the Pablog.
And here they are:
This may not be the most uplifting post. But it does involve hope. Like, we hope that this is Pablo's final hospitalization. We hope that we can get our lives back to normal, with our home as the center of the family. We hope that Grady no longer has to go away to his dad's house for long periods of time, like he has for the past two weeks. We hope that our family home can become a place of nurturing, quiet and fun once again.
Most significantly, we hope that Pablo's cancer does not recur. There it is. I haven't written those words up to now. Or maybe I have and it just feels real today? There it is: the scary, woolly, blazing truth: we have a single, deep, real hope for Pablo in this life.
We hope that his cancer does not come back. Baseball? Grades? Punctuality? Observant of household rules? Sure. But our greatest hope is the other, greater, thing. Jo Ann and Grady and I, and our family, and you, our worldwide family of friends, have a giant hurdle ahead: We have to let go—soon—and let Pablo gravitate back to his spot in life. He has missed what would have been his year of kindergarten. So what? He's gained so much more. He has blossomed and he has become our best friend. And what a best friend he is. He wakes up happy and keeps us laughing, he's always hungry, and he loves all our favorite songs.
Pablo's life, and our lives, have taken an unexpected path. But we'd never call it a diversion, or a wrong turn. It's just the cards that the universe dealt us. We can bitch about it and spit in the eye of God. Or we can inhale, exhale, inhale and get with the rhythm of life and abandon the false notion that we are the actors, director and stage technician in the play of life.
In my acceptance of where we are, I am visualizing Pablo's sixth birthday party on June 21. I am visualizing Pablo asking me to go out and ride bikes. I am visualizing Pablo being an angst-addled teenager. I am visualizing Pablo arguing with me about which Fitzgerald short story is the best, and which ones he simply phoned in for the paycheck. In my mind's eye, I can see Pablo pushing me away and pulling me back in as his heart and his volatile young emotions surge and swing within. And I can see the smile on his mother's face as he illustrates the art of Being.
I am visualizing Pablo carrying me to my grave. Damn, that's a nice iCoffin. And—oh!—is that a digital headstone?
This visualization is one sliver of faith in action. Faith is what you fall back on when you run out of moves. That sentence came into my head and out of my mouth at my brother Scott's memorial in 2004. At that time I did not anticipate my life carrying me to a situation more appropriate for that statement than the one that lead me to standing next to my brother's open casket. But my life has brought me back to that question. And here we are.
So whether you believe in a religious God (Jo Ann does), or the general concept of a universal God (I do), or you are agnostic, or you choose not to make a choice, today is a day when faith comes into play. For us it does. As Pablo leaves CHLA for what we hope will be his final long-term stay, we will give up the certainty of facts (there are none) and we will jump headlong into a place where grace and balance play the central roles in life. Insistence and control are outlawed in the place we're heading to.
At dinner on Sunday (April 12), Jo Ann and I began to share our feelings about the current in-patient stint. We don't actually have a lot of time to connect and speak because we are either changing shifts at CHLA, the off-duty person eagerly exiting, or I am breezing into P's room to say good morning on my way to the office or good night on my way to bed.
Our conversation veered into how much we cannot stand being at CHLA anymore. Everything about it is grating on us. The 800 mile walk from the parking lot to the elevators. The guy at the front desk who never remembers who anybody is, even though even other person who does his job is on a first name basis with us. Having roommates. The TVs are botched and the audio monitors crackle like AM radios. It's not CHLA's fault. We're just ready to be done. 11 months is a long time. At least when you live in a college dorm and have no personal boundaries, you get to go home for the holidays and spring break. We haven't had a break. Or a kegger. Or—OK, I better stop there.
...and that's where the lost post ended...
Tuesday, April 21, 2009
I sit and stare at the blank screen.
For the first time in 11 months and four days, the words don't effortlessly flow from my fingers. Tears are the only thing that flow without effort today.
Since mid-afternoon, Jo Ann and I have sat in our bedroom with Peter and Brie—four people blockaded in a cosmic bomb shelter. We've wept. Cursed. Contemplated. Held one another. We've let the light in. We've stared at one another's souls. And we've wept more. The entire time we sat in our bomb shelter, bombs were going off above us. Pablo and Polly—later joined by Grady—pounded the floor above as an afternoon of cops n robbers reached epic heights.
Upstairs: hours of laughter and sunshine.
Downstairs: hours of sorrow and spiritual free fall.
This morning's CT scan revealed three spots in Pablo's lungs.
It's that simple. It's that complicated.
Dr Mascarenhas looked shell shocked when he walked into the exam room. I inherited Dr M's shock. Overall, our guard was down. Polly wasn't even with us to take Pablo to the playroom during the medical meeting part of the exam. For 11 months, Polly has been with us every time we've met with Dr M. But Pablo's been happy, scrappy, grinning and playful, so we had her stay home.
We walked into the room thinking the worst was behind us. But then the worst was right in front of us: the cancer has recurred. Dr M believes the spots are anaplastic Wilms' tumors. There is no way for him to know this for sure by looking at a scan. What if the spots are a few random bits of blob left over from his infection a couple weeks ago? Jo Ann asked him how certain he was, based on his experience. His answer: 99%. A full biopsy is not possible—Pablo's body is too fragile for a major surgery. And the recovery from a procedure that would cut his chest open would be just too intense for him or us to handle. The risk outweighs the medical and quality of life benefits by an order of magnitude of about 10.56 trillion.
There is one surgical option that could disprove the recurrence: a laproscopic biopsy. It's minimally invasive, and would not require his entire chest to be cut open. And one of the spots is positioned perfectly for such a procedure—it's on the rib side of the lung and could be easily accessed by Pablo's surgeon, Dr Stein. In order for this surgery to be an option, Pablo needs a couple other tests this week. We are expecting to have those scheduled by the end of today. This is our beacon of HOPE.
Dr M and Dr Stein have put time on hold Monday for the procedure.
I am shattered. Jo Ann is shattered. Grady + Polly: shattered. Pablo: smiling and just wants to have fun. Why doesn't the cancer in his body compute and go away?
But still, in the face of nine months of chemo and a round of radiation, the cancer has recurred. And there is very little, if anything, that Dr M and can do for Pablo. His body has taken all it can take in the way of treatment. We knew that if Pablo's cancer recurred in the two years following treatment, we'd be in a tough place. He's received elevated, aggressive levels of chemo over the last 11 months. It's not like his little body can take it forever. There is a potential clinical trial that Pablo can participate in. We won't know enough about Pablo's eligibility until early next week. It's complicated. It's not easy. And there is no guarantee it'd prolong Pablo's life. Jo Ann and I do not want Pablo to be a patient for the rest of his time on this earth. No way.
Pablo's life. I want to punch the screen again. My mouth is tasting metallic again. Why do I have to write those two words—'Pablo's life?' Why? Why can't my little boy just live his life? Why is his life going to end too soon? Why can't he get a second chance? I want to punch the screen so badly I am shuddering. The facts are the facts at this point. We have run out of moves. If the options are proven to be not viable for Pablo, Dr M estimates that Pablo has three to four months of life left.
Our dear friend and one of my guides in this world, Sean McFarland, came over after Peter and Brie left. He has been a friend of mine for nearly a decade, and has known about Jo Ann since I was thinking about asking her on a date. Sean is someone Jo Ann and I have taken counsel with many many times over the years. He is my sponsor in recovery. Sean has known Pablo since he was in the womb. His own son, Dylan, is two months younger than Pablo, and we have watched our boys grow up together. On a moment's notice, in rush hour traffic, Sean drove all the way to our home in Silverlake from his office in Venice. He sat with us in our bedroom. He listened. He gave feedback. He told me to stop running the tapes. He always tells me that, and he's always right. And that's why I am not punching the screen right now.
Grady is so interested in what I'm writing that he's sitting next to me waiting to read my words. He came home from school, we broke the news to him, and he walked out of our room. He changed out of his school uniform and played with Pablo for five hours straight.
A minute ago, he was downstairs. I heard his voice. It said, 'I love you Pablo.'
Pablo's tinier, but surprisingly husky voice volleyed back: 'I love you too, Grady.'
There are no easy answers for our family today. I am out of hopeful, tuneful things to say. If you want to know the truth, I am f***ing sick of everything. I don't want to be in this world without my son. I don't want anything in this world without my son. I can't be hopeful about that. I can't.
The boys will sleep in our bed with Jo Ann. I will sleep at the foot at the bed in the orthopedic-prescribed Lazy Boy recliner that Acacia and Josh from our office picked up for me this evening. I got zero sleep last night. The back hurt too badly.
We love all of you.
We are all exhausted.
We are going to sleep.
Monday, April 20, 2009
Tuesday morning, Adam will pick me up at 8 a.m. and we'll make our way to Bev Hillz to see the orthopedic doc. I'll bring the disc that contains my CT scan from Palm Springs. At that same time Pablo and Jo Ann will head to CHLA for Pablo's CT scan (chest) and MRI (abdomen and pelvis). These will be his first post-treatment scans. He'll get scanned every 90 days from here out for (we think) the next two years. Then it will go to every six months. Tomorrow afternoon, we have a state of the Pablo union meeting with Dr Mascarenhas. He'll tell us the result of the scans as well as the GFR (nuclear kidney function test) that we got this morning.
We're requesting your most loving and positive energy, light, prayers, intentions—whatever you you do to connect with others, we're asking that you do it tomorrow around 9 a.m. PDT.
Saturday, Pablo started walking with a limp. His right foot is hurting, and he's favoring it to such a degree that he actually prefers to hop or sort of skip around. When I first saw these moves, I thought he was just having a good time kickin' it around the house in Palm Springs. The place is pretty big, and a kid can really get moving running from one end of the house to the other. At some point Jo Ann asked Pablo about this move, and he identified the pain. We're going to ask Dr M about it tomorrow. We are hoping that this pain, like so many other strange little blips of pain over the past year, is a fleeting thing.
As we walked into Malo this evening for Dollar taco night, Jo Ann took a look at hobblin' Pablo and his hobblin' Papa and cracked up. 'Gimp one and gimp two,' she joked as we ascended the stairs to the dining room. I was in too much pain to laugh—or to crack back at her. But it was pretty damn funny. Made us sound like a coupla characters from a Dr Seuss book. If we were, we'd probably be our faves—Star Belly Sneeches.
Tune in tomrorow for another episode from Medi-Land....
Tomorrow morning he will have a CAT scan, and we'll have a state-of-Pablo meeting with Dr M. The scan and meeting will happen every four weeks for the foreseeable future.
Sunday, April 19, 2009
Grady spent the night of his fifteenth birthday trolling the grounds of the Coachella music festival with Jo Ann and Polly. Coachella was part of his bday present from us (the other part is still a secret). He's been going to New Orleans Jazz Fest and Mardi Gras since he was a baby, so he's a veteran in the art of sailing through a hundred thousand people and eating overpriced salted soft pretzels between sets.
Last night, Grady had an access all areas pass, so he ran from stage to stage checkin out his favorite bands, hitting the backstage areas for a closer look when he had time. The main act he wanted to see Saturday night was the British / Sri Lankan rapper M.I.A. He saw her, and tried to jump onstage with her when she invited the crowd to join her under the lights. His attempt to get next to her was foiled by security. Before the show, he hung with her day-glo dancers—and Jo Ann, hipster baby mama extraordinaire, documented the moment in the pic above. I'd bet Jo Ann couldn't have predicted the events of last night 15 years ago in the birthing room at Cedars-Sanai.
Michael's house is cleaned and we're packed. We're gonna hit Coachella one last time before heading back to LA. Grady's first spring break of high school is over. Pablo's first post-chemo GFR (radioactive kidney test) is tomorrow morning at 7 a.m. And tomorrow afternoon, I have to leap head first (haha) into medi-land myself. I'll take the CT scan disc from the hospital and my banged up body to an osteopath in Beverly Hills and find out exactly what's going on and how the path to recovery will look.
Jo Ann and I drove to the crash scene today to take pictures. We found a part of my bike 20 yards down from the crash site. We saw the bottle cap from the water that one of the good Samaritan first-responders gave me (I am going to call and thank the three people who stopped to help, if their info is in the police report). It was pretty harrowing to stand there and look at that location: pitch of the road, the rocks—scary s**t. So grateful to see it from the perspective of, like, being alive—and being alive without a wheelchair.
Saturday, April 18, 2009
OK, back to normal life. When I rode away from Pablo and Polly at the top of the mountain on Friday morning, this picture was going to be next post to the Pablog. That was before my unscheduled interaction with the automobile at the bottom of the mountain. But all that's behind us now. We had a relaxing, zero m.p.h. / zero hospital day around here. Just what we needed. Peter + Brie + Lennon brought over BBQ materials, and we cooked out for lunch. Paki + Arianna + Sophia joined us. And later on, our homeboy Albert brought over some Brave Soldier road rash creme and iced espresso goodness. Karen from CHLA popped by. We sat around talking and laughing. That was our entire day right there. And that's more like it.
This evening, Jo Ann, Grady and Polly went to Coachella, and P and I stayed home. We had the best time, and we know the other three did too. It's Grady's birthday, and the only thing that could be better than seeing him go to Coachella and see a ton of great bands is if we were going too. But the important thing is that Grady's birthday—11 months and one day after Pablo's diagnosis—was a fun, easy-going day for him. He deserves it, after a year of living on the side of his brother's great matter.
All of these seemingly little things do not go unnoticed by Jo Ann and I. Like the fact that my crash yesterday was exactly 11 months after P's diagnosis, and exactly one month before my birthday. I'm not saying we sit around Nostradamus-style with a cauldron of wine and a quill pen, summoning meaning from every sliver of our lives. But we do step back, usually at night after the kids are in bed, and talk about these things. This morning, I asked Jo Ann what she thought the universe was telling me with the crash. I had my own view on it, but wondered what she thought. 'To slow down,' was her response. And that's exactly what I thought. She didn't mean to slow down in terms of miles per hour on the bike. She meant slow down in my life. She's right. Now I gotta figure out how exactly to do that.
Pablo's asleep beside me, like a little angel. He has been comforting me all evening. Earlier, we concocted a way for me to help him get his shoes on. Bending over at his feet was not an option. Once his shoes were on, I started to get up from my pedi-position. The pain shot through my body like electricity. He jumped up and started rubbing my back, soothing it with his hand; he looked me in the eyes and started to inhale and exhale in the exaggerated way that Jo Ann and I do with him in the hospital when he's in a painful or scary situation. It worked. I got up, then sat down on the piano bench, pulled him into my arms, and started to weep. The simple beauty of this little boy, after all the torture and scary shit he's been through, is unlike anything I've ever seen. I've been through tough things in life. And all it's done in me is elicit anger and hardness. I've had to work very hard to chisel through that. And little Pablo has steered himself down a different path. This is a pure example of a child teaching the parent.
And on that note, I'm going to sign off for the night.
Grady, Jo Ann and Polly are at Coachella rocking out. Pablo and Papa just cleaned to house from our afternoon swim + BBQ with Peter + Brie + baby Lennon and Paki + Arianna + baby Sophia. After that + during that, we got up to some serious playing. Now we are dressed to take the golf cart to dinner. Any time we mention the golf cart, Pablo lights up and is ready to go.
This afternoon when we were recounting Pablo's sweetness with Papa yesterday in the ER, he said, 'I'm not used to being the visitor.'
As of 6 p.m. PDT, nobody from our family has gone into a hospital any other medical facility. I'd say today is a remarkable day!
Friday, April 17, 2009
A full body CAT scan, an X-ray of my pelvis, and some blood work has revealed only a hairline fracture between the L1 and L2 vertebrae. I'm on meds and I'm gonna take it easy. That's what the doctor ordered.
That's all for now. Thank you ALL for your amazing and supportive communiques. Bet you didn't think we'd need your love and light for yet ANOTHER thing?
As you can see, I'm in micro-blog mode these days. With Pablo back on his feet, our whole family is constantly on the move, trying to get back in the swing of things. Everyone's still sleeping, and I'm gonna get suited up for my ride. Yesterday, my friend Jeffrey Light told me about one of his favorite mountain rides ever, and it's just a few miles down the road from here. For those of you who know the area, the climb is Highway 74 up to Vista Point. I'll take pics. Jesse and Josh from Eagles of Death Metal were over yesterday to meet with me. They grew up out here. I told them I was gonna take myself up that road and they looked at each other with a 'Is this dude nuts?' look and cautioned me. A lot. This, from a couple of guys whose last two album titles are 'Death By Sexy' and, um, 'Heart On.' OK, seriously—I trust J + J. Their wit is matched only by their pragmatism. I'm gonna keep it real, and stay alert on the descent.
Hoping Jo Ann, Polly and the boyz will drive up and meet me at the top. Jeffrey says there's a cafe up there. No idea if the cafe is good...or open... But if I can get these goons out of bed, we'll find out.
Thursday, April 16, 2009
She's asked that we respect her privacy. So while I can't state her name, I can ask that you just visualize a beautiful, vibrant, smiling young lady in your thoughts, prayers, intentions. We've all become experts at this stuff over the past 11 months. You know how to do it. She'll feel it as she arrives at the hospital in the morning.
Thank you everybody.
Wednesday, April 15, 2009
Pablo is doing incredibly well. Man, it feels great to write those words. As I sit here clicking away on the keyboard, P is sitting next to me on our bed, playing with a raccoon doll and a Simpsons doll that Matt gave him at the office today. It's nearly 10 p.m. and he's still going strong. I'll stay up with him all night if he wants to. That's how truly, actually, wonderful it is to see him happy and energetic and....here...at home...with no hospital check-ins in sight.
This morning, after an early breakfast of vanilla ice cream (he gets his way when he wakes up early with Papa), Jo Ann took P and Grady to Fred 62 for breakfast. Grady had been snowboarding all week, and was planning to hook up with Jimmy there anyway. I was at the office and was unable to join them. A couple hours after we parted ways at home, Jo Ann called the office. Not unusual. Immediately, I could tell that her tone was off. The last place I expected them to be was CHLA. But that's where they were. While P was digging into his Billion Dollar Pancakes, he started to feel funky. He felt cold. And his body didn't feel right to him. He didn't have a fever or any other outward signs of sickness. Jo Ann asked him if he'd like to go to CHLA. He said yes, and off they went.
After a thorough exam by one of Dr M's physician's assistants, and a blood test, Pablo got the all clear. The P.A. said that P's funkiness could have been as simple as his body getting readjusting to the normal rhythm of life. After a year of very precise measurements and medical strategies, a nonspecific, novel explanation seemed fine to Jo Ann. After a couple hours of time at CHLA, she gathered Pablo and his toys and headed for home.
A major upside to going to the unplanned day hospital visit is this: Thursday's blood draw was done today, and P doesn't have to go in tomorrow. That's hugely amazingly cool. And not just in a general sense. Here's why:
Our friend Michael Ross has a fantabulous house in Palm Springs. It's on a country club gold course, has a pool and a hot tub, and is not exactly tiny. He has a vast book and DVD library, and a killer kitchen. It's the kind of place you see in magazines. And we'd begged him to have us out there this weekend for the Coachella music festival in Indio, which is about 10 minutes from Palm Springs. It's a giant music fest, with something like 100,000 people a day for three days. We have Silversun Pickups playing Friday night, and lots of other friends / friends' clients playing. Grady has been going to New Orleans Jazz Fest since he was born, and so has Jo Ann, so they're in their element at this kinda event. I could take it or leave it. Usually, where there at 100,000, I am not. But Pablo and I are gonna go hang for as long as we wanna and then go back to the house. Polly is coming with us, and I am hoping she'll be able to see Morrissey, one of her faves. Only prob is, he goes on halfway through Silversun Pickups' set. She will have a tough choice (haha). After a year (we can call it a year, right? You'll give us that?) of Polly living and breathing Pablo's treatment, walking out on one of the bands that helps pay her salary to see one of her all-time favorite artists is wildly appropriate, acceptable and effin OK!
You know we'll have lots of stories and pics posting here throughout the weekend.
A snapshot of our general state of mind:
It's been hard to catch up on life. I feel like I can't finish anything. There's always more to do. Seems like every hour I've lost to Pablo's treatment requires several hours of catch up at the office. Maybe it just feels that way. The feeling of fatigue has not left me or Jo Ann for weeks. I got on my bike this morning and I just did not have it. I don't think even a leisurely bike ride beside a granny would have been in the cards for me.
An efficiency expert could smooth out my work flow, and would probably tell me to sleep for six straight days to get my optimal energy back. But that isn't realistic right now in my personal or business life. Jo Ann and I are both expecting this weekend to be rejuvenating, relaxing, and—can I say this?—FUN.
Monday, we'll be back at CHLA for a GFR test (the radioactive kidney test that takes like six hours). Tuesday morning brings another abdomen and chest CAT scan. That's pretty damn quick and easy. Then, with those results in the CHLA computer system, we see Dr M Tuesday afternoon for our six week exam and parents' meeting. We're all so used to goals around here, so I'm gonna keep it rolling: please set your thoughts and intentions on Pablo not only having an off-the-hook weekend, but sliding into these two tests next week like a champ.
But for the next five days, we're like John Cougar Mellencamp: R.O.C.K. AND NO C.H.L.A.!
Monday, April 13, 2009
Driving home this evening from my Venice meeting, I was on the phone with Troy Barrott in Sydney. He manages Dangerbird Records band Dappled Cities and is a longtime friend. He's known Pablo since he was less than a year old. I put Troy on hold when another call was ringing on the other line. I was sure it was Jo Ann checking my ETA, so clicked over and said 'I'm getting off the 101—be home in five minutes.'
An unexpected voice with an unexpected message started barking at me. 'Papa! That's not what I need to tell you,' the voice said. 'We need A-A batteries for the walkie-talkies that work. Pick some up on the way home!' I couldn't hold back my laughter. The sound of his husky little voice and the promise of walkie-talkie fun inherent in its tone brought a much-needed warmth to my heart. This last hospital stay was indescribably tough. I assured P that I knew what double A batteries were, and that I'd get pick up a couple packs at 7-11. I clicked back over and told Troy this story. We both rolled with laughter, recalling the days when Pablo's main use for his lips was drooling, not talking.
When I came home, Jo Ann was drawing a bath for her and Pablo. He is able to put his legs in, but total immersion won't be possible while his port remains accessed for his three-times-daily antibiotic drip. As the door shut behind me, I announced that I was home. That husky little voice from downstairs: 'I know Papa. I can hear you!'
A few moments later, the voice and the little body behind it emerged from the stairwell. There was a pillow case strewn over the shoulder of the little body, filled with something heavy.
'What's in the bag?' I asked.
'Stuff,' the voice replied.
A moment later, he asked me to join him in playing robbers. His bag was filled with $40 in small bills and rolled coins.
'Is that all the money from your piggy bank?' I asked.
His reply: 'Of course. I'm a robber!'
From there, we introduced the walkies and things went uphill on Mt Fun until Mommy called Bath Time.
The photo below is Pablo's 10 p.m. antibiotic drip. The first one will be at 6 a.m. daily, followed by a bag at 2 p.m. Jo Ann has become a home nurse over the course of the past few months. She can give Pablo his GCSF (white blood booster) shots in his thighs. And she knows the entire protocol for flushing the port in his chest and hooking up the bags and pumps that carry antibiotics directly into Pablo's heart. Serious stuff. Like anything Jo Ann sets her sights on, the home nurse game has quickly and easily become part of her motherly repertoire. I think we'll keep her.....
Sunday, April 12, 2009
Anyway, Brer Rabbit promised he'd put in a good word for Pablo with Santy Claus.
Now, back to our regularly scheduled sugar coma.
Saturday, April 11, 2009
Mommy's at home boiling eggs for our coloring party later today. She's also strategizing with the exTerminator on how to trap the vermin in our attic. The dude asked her to stand watch while he moved the cage into the attic. 'Close your eyes and wave your arms in the air,' he said. 'If the raccoon jumps out of the attic it'll run right by you and go out the front door.'
Jo Ann's response? She laughed and went downstairs and bolted herself in our room! What any sensible person would do.
The raccoon situation is, to keep a good sense of humor about it, like, something to file in the 'Don't We Have Enough On Our Plate?' Department. The past few nights, I've been so zonked, I would've let the beast sleep next to me. Thankfully Acacia and Josh from our office have been extremely helpful on Mission: Raccoon.
Pablo and I went to our secret play hallway (the administrative area of the fourth floor) and played hide n seek. It was fun. Every time he counted, with his eyes closed and his forehead against the wall, I stood and watched him until he said 'eight.' Those moments were so precious. Much more important than actually finding a good hidin spot.
P's been laughin + runnin + playin all day. He really is ready to bust outta this place. From our point of view as parents, just judging his energy and activity level, he is 120% better than the day we brought him here. We are certain we'll be heading home Monday.
Earlier today, I saw the guy at the front desk making out the security pass for the Easter Bunny. So I know homie's headed over here to drop his sweets n treets for all the boys + girls. Ending our FINAL - I SWEAR - stay at CHLA with a joyful holiday is a gift in itself. We'll go home on a high note and begin Pablo's ascent back into the normal life of a healthy five- (nearly six-) year-old.