I just looked up at the clock. 10:24 p.m. I feel like I didn't get anything done today. 'Anything' has a new meaning for me. It used to mean running around finding problems to call my own. (Well, it still does....) Today, 'anything' means talking to doctors, laying next to Pablo on the exam table as a cardiology tech slathers his chest with warm jelly and slides an electronic wand on his chest to obtain pictures of his heart. Or waiting for Pablo's surgery to end, sitting for hours in a room with awful chairs and four televisions yelping in Spanish. What I got done today was a full day of work. Lots of phone calls while pacing the back hallways on our floor, or sitting in the conference room. Peter and I met with the architect who is doing our new office building. We chose a glow in the dark laminate for the reception desk. And Peter wants a ping pong table to fit in somewhere. Awesome. I need to let him know I want a punching bag in our office!
All the work stuff was great. But it's even greater when P is at home chilling, healthy and happy, and I am at the office. Working while in hospital loses its charm after a few days. It's hard to muster the energy to drop four floors, walk the length of the building to the lobby and head outside to make a private phone call. This is the way it is, and I make it work.
Still, nothing feels good. Except being with Pablo. Talking about Pablo with Jo Ann, Grady, Polly, family and friends. Laughing with Pablo. Fighting for Pablo. And today was P's first post-surgery recovery day. So, not much to fight for. Just a lot of quiet and calm. Dr M came by and spoke to Jo Ann about radiation. We are meeting tomorrow morning with the radiation oncologist and the CHLA physicist. Much more on this tomorrow. The long and short: we are weighing two options for radiation: CHLA and Northwestern Memorial in Chicago.
¶ Jo Ann and I have been feeling the need to commune with other cancer parents. We have all the support two people could ever wish for. You, our incredible community of friends, have embraced us in your loving arms, and have not let go. But it is not fair for us to expect that you can carry all our weight. Most of us are experiencing cancer for the first time. The power of a group of people who are/have gone through a shared experience is like nothing else. In our case, we need to sit with other parents who are living (or have lived) the insanity, the emotional, physical, mental anguish that is pediatric cancer. The central question for me is: how do I withstand / tolerate / accept the great Guess that is cancer treatment? Only others who've trudged this path can answer that.
To this end, I reached out to Doug Ulman, the president of Lance Armstrong Foundation, to ask for ideas on a support group. Googling and noodling around online got me nowhere. You'd think there'd be hundreds of groups. Look for yourself. Type in 'childhood cancer support group parents.' Not much there. Except seeing lots of sad, sad s**t I do NOT want to see. Doug recommended a fine national organization, The Wellness Community, that has offices in Burbank and Pasadena. I will check them out in person very soon.
Nearly a decade in recovery has taught me one thing: a group of people coming together to solve a common problem have much more power than a man (or couple) sitting alone, trying to will away a problem. It works for me. So today, at 3 p.m., I stepped into action. I attended a meeting of the CHLA program called HOPE. It's a group for parents of cancer kids, facilitated by a psychologist. They have a sister program, Teen Impact, aimed at teens with cancer (and their families and homies). Interestingly, it's also Maroon 5's official charity (it says so on the back of the brochure).
The meeting I attended was all parents from the fourth floor. This floor has three types of cancer: soft tumor (like Pablo), Leukemia, and bone marrow transplants. Translation: the parents of the fourth floor have a lot of pain to release. The four mothers who sat at the table shared, I shared, and the facilitators made helpful comments, questions, statements, that either pulled more caustic matter from our hearts and minds, or ameliorated our general slate of confusion and despair. They served Girl Scout cookies and freeze-dried coffee; an interpreter bridged the English-Spanish gap for the two Mexican mothers in attendance. It was helpful. It was a first step for me to admit that this is really happening—that, once again in my life, I need specific help for something I can't handle on my own.
¶ This evening, a nurse came in to hang his new 24 hour nutrition bags on the I.V. pole. P and I laid in bed, zoning out, not saying a word (he's said maybe five words to me all day), looking up once in a while at the nurse's progress. For a couple seconds, I fell asleep. My face, his shoulder. A noise woke me. There are more noises in this place than Midtown Manhattan. I swear. (To wit: they come around at 10:30 p.m to take out the trash. In a children's hospital!) My fuzzy eyes opened. Pablo's bare chest, shoulder, arm. My little boy, five years old. This is sweet. Then: thread-thin electrode wires. Oh, yes: hospital, cancer, surgery. I forgot.
Pablo: quiet as a church mouse all day. Constantly inward. Eyes filled with shallow fright, pr maybe just tired. Hands always ready to defend the wound (this week's wound) on his abdomen.
It's bedtime for me. Tomorrow is going to be a big day filled with lots of 'anything.' I will feel good showing up to be a father and a husband. And I will feel good writing about it.