Jump Already!

I received a call from Dr. Shilpa Shah on my first day back to work. Oh no, I thought. It was Monday and I had gotten a CT- scan on the Friday before. I didn’t expect a call so quickly. She never called me.

“You have some activity in your brain.”

There’s a disconnect between her velvety voice and the information delivered. I hang up the phone. Numb. Why am I at work? What’s wrong with me? Have I not learned that the days of slumber are over, the illusion of boundless time, the sleep walking from event to event?

Dr. Shah arranged more scans. I had a brain MRI set up for the following Friday . I arrived and the technician placed me in a long cylinder.

“Claustrophobic?”

“No.”

He inserted foam into my ears. He shot contrast into my veins. Soon, I was meditating to the magnetic beat, visualizing myself bathed in green (the color of healing) and picturing how Philip Glass might incorporate the rhythms of the MRI into one of his pieces. I pulsated on the table for an hour. I then raced the disks over to my radiation oncologist. Dee was visiting her new born nephew in Ireland, so I asked a friend to accompany me. We both sat quietly in his office until he arrived.

The doctor entered. We exchanged pleasantries. Why do I always feel the need to put doctors at ease? He pulled up images of my brain on a big screen, mulling over them, scratching his chin. He used terms such as, “I think,” but “I can’t be sure.” I focused on the imperfections in my brain, white circles that shouldn’t be there. It looked as if a dandelion had been blown into my frontal lobe. The doctor sat on a chair with wheels so he could look me in the eye. Then look away.

“They’re brain mets, right?” I said.

He mused,“ it could be an infection, or a fungus, or Valley Fever.”

Wouldn’t that be nice, I thought!

He wouldn’t commit to anything.

“You’re asymptomatic which is good, but its confusing.”

I welcomed his confusion.

Together, we shared a nervous smile.

“Let’s do a scan in a couple of months,” he said.

It sounded like he was punting the ball, but I agreed.

I was a bloodless ghost. I couldn’t feel my skin, but my muscles were working and I walked out of the office. Everything had slowed down. One of the office staff shared a plate of cookies with her coworkers, another laughed for unknown reasons. The most incidental activity, which was everywhere, made me want to scream. I felt as if I arrived from solitary confinement. Laughing or smiling felt like a dagger. I was full of envy and rage, but in a nonsensical way, it was a calm rage.

“What did you think?” I asked my friend while getting into the car.

“I wasn’t impressed by his shoes,” he said, “shoes say a lot about the man.”

“They were new and shiny … probably from Ross,” I said.

“They weren’t Brooks Brothers, that’s for sure.”

I drove home with the images of his black shoes on my mind. He’s on top of the food chain as far as oncology is concerned. Why Ross?

I didn’t want to tell anyone. I didn’t want to let anyone down. Does this happen to everyone? Probably not, but it’s what I felt. The idea that I caused this somehow is like a mist that won’t lift. Over the next couple of days I cried, mostly in the shower, the falling water elicits a torrent of feelings, I guess, followed by an unexplainable relief (that’s quite nice.)

Then I got bored.

I hated the feeling of hopelessness. So, I reached out to others who could help. I wanted direction. I thirsted for it. The people that run Ojai Cares are virtuosos in the category of help. I found out about The Pine Street Clinic in San Francisco. I was advised on a host of things.

I now follow the ketogenic diet; I take supplements and medical cannabis. I’m a practitioner of Tai Chi and other forms of meditation. I still walk in the chaparral and surf as much as possible, but exercise ignites a pain in my hip from tumor scars, or lesions, that slows me down. People have survived and thrived with brain mets for many years. I plan on being one of them (even if it’s unconfirmed.)

Most days I feel inspired and charged with life. I read in one of my cancer books that’s there’s a difference between, “not wanting to die,” and “wanting to live.” I get that and want the latter.

I’m so grateful for my consciousness, and this opportunity to work on myself. It’s like the first time being on a big diving board as a kid. There’s a long line in front of you and one behind as well. No time to chicken out and turn around. I find myself afraid to jump off but once I do it’s not bad, in fact, it’s fun. I get the opportunity to let go, to let go of my hostages, people and institutions that I have expectations of, I get to let go of old ideas I’ve dragged around, ways of being that no longer work or serve me in any way. Do I do these things because I’m an enlightened person? No. I do it because there’s a long line behind me and they’re growing impatient.

“Jump already, would ya’?”

Here I go.

Scan followed by Bad Week followed by Good News followed by who knows what?

When it came time for my second PET scan, I thought no big deal. I felt healthy. I had good energy and my spirits were up, but as the date approached I starting getting nervous. I watched the Oscars and when they sang the theme to “Selma” I choked up. I turned it off. I knew my cancer had been diminished but it wasn’t gone. The prospect that it might be worse than I expected was like a rip tide that kept drawing me into deeper waters. On the outside I thought I was “fine” I was “good” everything was okay. I’ m not the type to complain, but fear returned.

I set my appointment very early. The imaging center usually has nightmarish waiting times. I arrived first, great. I was given a horrible liquid to drink and another man showed up. The sight of him bothered me for some reason. He smiled. He was chatty. I was in no mood. He spoke to the receptionist who was dressed like a nurse. He was nervous so he talked and talked. He told her all about himself. We all want to make a claim in the world. We have a need to name ourselves, explain where we’re from, and how we’ve arrived there. The old man sat down and I avoided eye contact. That didn’t prevent him from finding some way to connect with me. He told me he liked my shoes.

I had a hyper sensitivity to everything. Like most people, I see the world through my own camera. I’m the director, the actor and the producer, so when this world is threatened I get shaky. I see others living with a causal normality, but I float, no longer in charge.

While at the imaging center I tuned into my surrounding on an acute level. I looked at the magazines. People and Men’s Health. Latina. There was a morning program on the TV that was beyond absurd. The office had a mind numbing banality to it. I think all doctors must use the same interior decorator.

I was ushered into another room and injected with fluid. The technician was an elderly man who explained everything to me in great detail. He pricked my finger and told me my sugar count, he told me what fluids were in me, how the machine worked. I felt like I was in good hands.

“You’ll be radioactive all day,” he said.

I was told to put my hands over my head and to not move for 25 minutes. I tried to pray but I couldn’t. My mind was a blank, thinking nothing, maybe I had finally surrendered to the process? Or I was more willing? Either way I didn’t seem to care.

The scan ended and the technician smiled as if I had accomplished something.

Later on I went to the beach. It was mid-day and the tide was going out. It was the first day of a swell. I was stoked that it wasn’t crowded at all. It was warm and off shore. The ocean had an inviting deep blue color to it. There was a section at C Street where the lefts were pumping. I caught one and leaned into a wall of bending water and light, water that now appeared more green than blue, translucent and ephemeral, transitory, a gift. There’s nothing like surfing to be in the moment, nothing where all the cells in your body are completely concentrated and yet you’re relaxed, and nothing where your success is entirely contingent on your willingness to work with a motion you can’t control, with the movement laid out before you.

The remaining part of the week went badly. I felt awful but I didn’t know what was wrong, really. I couldn’t pin point it. My usual ways of dealing with things didn’t work. I visited my favorite coffee shops. I wrote, I hiked, I read. I read a lot of the Guatemalan Rodrigo Rey Rosa. I wished that I could write like him. I watched soccer with Conor. I walked the dog. Nothing worked so when in doubt do something for someone else, right?

I made some nice dinners at home. I played host to a friend who stayed a couple of nights. I mailed a book to the host who put me up while I was in mammoth. I began to feel better, but then there’s this little thing called the subconscious. One night I dreamed I was playing soccer. I was the goalie but I was wearing flip-flops! I didn’t want to be subbed out so I tried to hide the fact that I didn’t have any cleats on. This was dreaming logic, of course, and it all made sense. When I woke up I burst out laughing.

My results came in a yesterday. I visited Dr. Shah and once again I was the first appointment. I arrived before she did. I watched her walk in through the back door and put on her “doctors coat” while I was weighed and my vitals were checked. She appeared with her usual smile. I noticed that her lab coat had pen stains on it and she was wearing clogs.

“Your tumor has gone from 5.8 centimeters to 2.3,” she said, “and the malignancy is inactive.”

The news stunned me. Once again I was adrift. I floated but in a good way. I felt the security of boundless time, the illusion of it. I was the director again, directing myself in the movie in which I stared in. I wanted something definite, though, something a kin to its gone forever and it’s never coming back!

So I pressed her a bit.

“Do you know of any cases where there has been complete remission with my type of cancer?”

She told me that the lesions on my bones were also inactive, “but cancer will always be with you and we’ll have to treat it like a chronic disease.” I was okay with that. In fact, I was grateful beyond words. It was hard to talk for a few minutes while it sank in. I thought of two of my friends from my cancer support group that have succumbed to this disease. I thought of other people I know that are fighting it. There is no rhyme or reason to any of it.

“Thank you,” I said, “Thank you so much.”

Getting Stronger

I had my first bone strengthening medication last week. I was now in the “infusion room” where the chemotherapy was doled out. I have a certain amount of guilt about this especially when sharing at my cancer support group. I feel as if I haven’t earned my stripes because I take a chemo pill. No weight loss for me. No hair loss. No comprised immune system.

A nurse led me to the corner room. The floor was covered by an expensive looking tile. The walls were covered with contemporary art. The space had a designers touch. It’s a Spa, but one that gives you poison. There’s money in cancer, alright. As I’ve progressed from my primary care physician to my pulmonologist to my oncologist, I’ve noticed the quality of the décor becoming more abstract. Less personal. For instance, my primary care physician had an exam room with a cartoon of two oversized horses frolicking in midair, aka, My Little Ponies. Amongst the brown carpet and old furniture I stared at this image when I first learned I had a life threatening disease.

“Take your pick,” the nurse said. She pointed to all the recliners lined up against the tinted glass. I picked one and sat down. There was a holiday cooking show on the TV, and as I waited for what was next, I learned everything I needed to know about the yule log. The nurse walked behind a huge picture window that acted as a guard station. In case we made a run for it.

The only other person in the room was an elderly middle-eastern woman (I guessed ). Late 60’s maybe? Good looking lady with soft dark eyes. She wore leggings and a trendy top. A battle cry for lost youth. Her hair was gone at some point, but was just starting to sprout back. She paced the floor and pulled her drip alongside her. She looked impatient. Pissed off, but when she saw me she smiled. A way of checking in. Connecting in a non-verbal way.

My nurse returned. She told me the Zometa takes about an hour to get into me. I relaxed. She looked for a good vein.

The middle-eastern

lady walked over to me.

“You getting your chemo?” She said.

“No,” I said and felt guilty, “It’s a medication that helps build bone because it’s in my spine.”

“Oh,” she said and she shrugged, as if to say isn’t cancer a bitch the way it moves, “mine is in my lung.”

“I have lung cancer too!” I said with enthusiasm. I was excited that the only other person in the room was afflicted with the same ailment as me. But I wanted to know more. Did she have small cell or non-small cell? What stage? I wanted to ask, but this would have been too early, too distasteful. I was left thinking about it though. I also wondered about her country of origin. Her voice was sultry but her accent was unrecognizable to me.

“How are you doing,” I ask.

“It was almost gone,” she said, “but then another spot came back.”

She said this as if she was taking about a skin rash.

“Mine moved,” I said.

She looked sad for me.

We talked more about our disease but almost as if they belonged to other people, as if there’s this person we know that has cancer. We have the same name, look the same, but it’s not us! Each of us has a different relationship with our cancer. Some in my group have affection with theirs. They adore it. One woman wrapped her arms around her breasts as if cuddling a child. Some spoke about how they love every cell in their body including the ones that were out of control. Others, still, hate the cancer in them. They talk about destroying it, killing it off. They visualize fire during meditation. Burning it away. I always listen with fascination. I feel almost blank inside, indifferent. I don’t feel any of this; rather I visualize healing, but healing in a generic way. The way you would get over a cold. The way the immune system just takes care of it.

I think the experience is elliptical for most of us. An emotional ride that takes us around the bend. There are days I feel so good I forget I have it. I’m back surfing and hiking on a regular basis but the other day my son bumped me on the shoulder (affectionately) and I could feel it in my neck. When I lay down on a yoga mat I feel discomfort in my back ribs.

The older women walked towards the nurse’s station.

“How much longer have I got?” she pointed at the bag of chemo that dripped both medication and savagery into her.

“Another couple of hours but your half way there,” the nurse said.

The lady sulked. The trendy senior that was once from somewhere else but now was in America, Oxnard California, specifically. There are no clear definitive lines in the infusion room. No language barriers or cultural divides. No religious differences worth talking about. No borders.

The nurse pulled out the needle in me, and said good bye. I’m told the medication with help prevent fractures. I’m told to take Vitamin D supplements and calcium. I’m told I’ll be tired for a couple of days. Flu like symptoms. I’m told to not exert myself.

I walked out to the parking lot.

I told myself no big deal.

Others have it much worse.

Fire and Heat

An old friend came by the other night. Actor turned therapist. He works with children in Ventura County. He has this penetrating look. The look of an active listener. He’s the type that makes me aware of how little I listen. He makes me aware of the fact that I merely wait my turn so I can jump into the conversation with some clever retort. PJ doesn’t do this. He waits, deferring to what’s on my mind. His eyes never leave my gaze for a moment unless of course he’s laughing which is deep and heartfelt. Pure Joie de Vivre.

After I finished going on and on about my situation we spoke about the kids, work and faith (a bit). PJ has a trained voice and he’s a reader at the parish. He adds a vitality to the scriptures; he makes them come alive. There’s a heft to him. A gravitas. I’m envious of his nature in a way, envious of his ease. I remember when his daughter would meander up to the podium and he’d give her a hug while still reading away. This was highly unconventional and could have rocked the parishioners, but he never lost his connection with the text, or his audience.

“I was an atheist for a while but that one quote from Shakespeare always got me,” PJ said.

“Which one?”

“There are more things in heaven and earth than dreamt of in your philosophy.”

“Hamlet led you to faith?”

“To agnosticism.”

He laughed and everything rocked with it. His belly. His shoulders.

“I kept thinking that the likes of you and me are the highest consciousness?” He laughed again. “Really?”

I used to stare at the icons in church as a kid. Madonna and Child. Jesus on the cross with a Roman soldier looming, arms folded, mallet in his hand. John and Mary at his foot in despair. Three dimensional narratives. The statues suggested something, though, some mystery despite the confusing message. The strident message from Paul about faith as opposed to the cool hand of Jesus who reassured despite your lack of. I also fought with my brothers in the pew. My dad would give us “the look”, occasionally grabbing our arms and squeezing. His hands like vice grips. Mom sang in the choir just out of eye shot of all the nonsense.

As I got older the message dimmed and I cast aside the icons that offered something. Breaking the rules is what it’s all about as Bruce said, “momma always told me not to look into the eyes of the sun, but momma that’s where the fun is!” The seven deadly sins became, in their own way, the eyes of the sun. An invitation. Something to be tested out. Horary for lust, greed, and sloth!

College, job and marriage came soon enough. I was conditioned for such things so when the kids came along my religion seemed to have a rightful place. Call it the passing on of tradition? Call it monkey see monkey do? I had been trained to go, and therefore I trained my children to go, like I had trained them to do many things, like the need to floss for instance.

I asked PJ if he wanted some food. It was getting dark. I was hungry. In order to take the crizotonib I have to eat otherwise it upsets my stomach, so I prepared some chicken and dropped peeled potatoes into a pot of water. There was an abundance of kindling. I started a fire.

“I wanted to be part of the second wave,” PJ said. The dry sticks ignited and popped, “I know when I was sick so many came in the beginning.”

“I appreciate that,” I said, “but I have a question…do you still go to mass?”

“Only when it’s my time to read,” he said.

“I don’t anymore,” I said, “not after all the priest scandal.”

“I miss seeing you,” PJ said.

In my thirties my drinking had reached a point of no return. Alcoholism is an idea, like love, or God, that can’t be defined, or that the explanation is unsatisfying, or incomplete. Both straight forward and counter intuitive at the same time. For example, Alcoholism involves drinking but has little to do with alcohol. God is everywhere but is more verb than noun. They’re both something to be understood with the “heart-mind”, rather than the mind (I suppose) and in my case there was a small window to investigate such a notion (that I might be an alcoholic- that there might be a God), a little portal, a small crack in the door. One thing led me to the other (not sure which). The point is I stopped. The “idea” of God filled the void. I changed, and my conception of God has changed again and again.

That was a long time ago.

Now cancer has led me back, again, to God. It has been “the second wave.” The most prominent feeling after my diagnosis was fear, but that has been replaced by gratitude. It’s like a fire has been lit inside me, a fire that won’t go out. Every encouraging message, every letter, every dinner, or present, or good wish, stokes the fire, but still it goes deeper than that. The fire has been lit by someone, some God, and all I have to do is remember it, and put my hands over it when I’m cold. Warm myself.

A Day in the Life

Tracey came over. She’s a friend with stage 4 lung cancer. It’s easy to see that she’s suffered more than I have. She has a painful skin rash which is a side effect from her targeted therapy, her chemo pill, which is called Tarceva. She wore a long sleeve shirt and floppy hat. She moved from the driveway to my kitchen in a slightly masculine way. She is a personal trainer and she oozes determination. She’s so tough that she’s the type that would have walked out of a gulag. One Day in the Life of Ivan Denisovich comes to mind. The way she’s leveraged her cancer to her advantage.

I had a simple lunch ready for us both. I offered her some Reed’s Ginger Ale.

“Never tried it.”

“Great for nausea,” I said. It felt good to offer her something that might help. You see, I’m slightly intimidated by Tracey, and embarrassed by it at the same time, because she’s smarter than me, and she knows her cancer better than I know mine, but she’s all ears, really. When we spoke at the same time she said,

“No you.”

“I can’t believe how much you know about your cancer,” I said.

“I read all my reports,” she said. She has this wry smile that comes out when talking. It’s delayed as if she were humored by the arbitrariness of life’s turns, rather than bitter. Her eyes are sea glass green that change in the light. Her face is expressive. Her body language puts me at ease.

“I didn’t go to the last cancer support group because one woman (a care giver) spoke endlessly about the calamity of it all,” I said, “she went on and on about her husband’s sickness, their relationship problems, and family addictions.” Tracey listened to me without judgment.

“That’s too bad because at the last meeting we talked about how we got our cancer,” she said, “it was real good.” Clearly, I missed out on something special.

“So how did you get yours?” I said.

She bit her sandwich and took a drink looking at the contents in the bottle.

“I’m not certain, but some say that you have cancer 7 to 10 years before symptoms show.”

“Jesus,” I said, “I heard that the lungs are associated with grief …it makes me wonder about mine.” I wanted to add something to the conversation.

“I told you that,” She said. We’ve met maybe a couple of times but we’re friends bonded by our shared journey. Our situations are different. Her economic situation is tougher. Her living situation more challenging, our mutations slightly different, but we’re both walking down the same road when all is said and done.

We paused and ate. I was left thinking about grief, remembering my father died 7 years ago. Could this possibly be a reason? His passing hit me hard and stayed with me a long time. It was short-sighted not to admit how much his death affected me. Call it stubbornness, or stoicism, but I didn’t ask for help. I didn’t know how.

“What did you do today?” I asked.

“I came from Feldenkrais.”

“What’s’ that?”

“Awareness through motion,” she said, “retraining the smaller muscles because the bigger ones tend to dominate.” She demonstrated by turning around and showing the muscle groups involved. It sounded strange, but I watched with a new openness. Cancer has allowed me the freedom to consider alternative notions. About everything. It has allowed me the freedom to heal in ways not imagined.

Later that day I went to Quest for a blood draw. I got into my car to leave and in the rear view mirror I saw the caregiver who complained so much at the support group. The one that irritated me. She pulled into the driveway and her husband and kid got out. I revisited her story. Cancer eating away at her husband. Addiction eating away at her son. I could almost hear her husky voice, a smoker’s voice, but this time I felt empathy for her as her husband walked away without even looking back. I decided to make contact rather than duck for cover.

I got out and waved.

She tucked her jeans back into her uggs. She lifted her head and stared at me. She probably thought, where do I know him?

After a moment of pause. After recognition.

She smiled and waved back.

The Magic Pill

I went to see my oncologist after 25 radiation treatments and one week on the Crizotinib (the Chemo pill). Dr. Shilpa Shah has a schoolgirl appearance with warm brown eyes. Her smile leaks out every chance it gets. The first time I met her I thought, no way. She’s my oncologist? Wait, I have an oncologist? She’s from Indian decent, or Iranian? I remember wanting to know exactly which, but what did it matter? She’s too young. Too pleasant. The timber of her voice suggested the hospitality industry, not medicine.
I was led into the patient’s room. Four walls painted an icy blue. A windowless box room. A picture framed in the corner had all the platitudes about what cancer can’t do, like take away your dignity, your courage, you friendships, etc. Reading it the first time angered me, but that was behind me now.
“You look good,” she said and smiled.
“I feel good,” I said.
I hadn’t taken a pain med for three straight nights.
She looked at my file which is a couple inches thick, her eyes scanning the numbers.
“Your blood work is in and your numbers are good,” her eyes and face radiated, “the cancer cell count in your spine has gone from 400 to 200.”
In the fog of it all, my body had been returned to me, silently and miraculously, over the course of several weeks. I could slip in and out of a car without using two hands on the door, twist in the shower, and get out of bed without using props. I knew that I was on the mend. The pain had melted away, steadily. No more Norco. No more dehydration, no more cotton mouth. Even the quality of my hunger had improved if such a thing is possible. My body use to cry out for food, sickly, now my stomach rumbled the way it used to. My cough seemed to vanish overnight.
I’m so grateful for modern medicine, for Big Pharma, and for great clinicians like Dr. Shilpa Shah. These are early days. The chemo pill is not a cure. It disrupts an enzyme in the mutation that destroys the cancer. The science is beyond my ability to understand it. It works, for now anyways. The mutation can change though, chameleon like, over months or years (I should be so lucky). I try not to get too high, or too low, because this is a long bumpy road. Maybe that’s just a defense mechanism? I don’t know for sure, but I’ve strapped myself in and I’m enjoying the ride at the moment.

Something Positive

I got some good news. I have the ALK fusion gene that occurs in less than 4% of people with my condition. Scientists have developed a targeted therapy for this mutation that was FDA approved in 2011 as a front line defense because of its outstanding results. This means I won’t have to go through traditional chemo therapy. So instead of my system being carpet bombed by intravenous drugs the Crizotinib will target only the cancer mutation in my body. My doctor was real clear, “results are better and the side effects are lower,” but it’s too early to tell about longevity. This is the biggest break I’ve gotten since I heard the news. I’m delighted and excited to start, but I’m not sure how much my attitude had to do with these results. In other words, did my positive attitude help me?

I’ve been told by everyone to have a positive outlook on things. To keep my chin up. To have faith. I always answer the same way.

“I will.”

And I do, but this answer is usually followed by me gulping hard. Why? I don’t always feel every moment of the day that things will work out for me. Barbara Ehrenreich wrote an article called Smile you’ve got Cancer which delves into the cult of positivity. She makes the point that not only was the cancer killing her, but her lack of positive thinking made her feel doubly doomed. She rejected the idea that cancer “was a gift,” or, “the best thing that ever happened to her.” She’s a bit of a contrarian but the article had me laughing.

My emotions run the gamut, mostly hopeful, and largely buoyed by the wave of good will and prayer I’ve received in person through letters and on Facebook. I had no idea I had so many genuine friends. I had no idea that I had so many in my corner who cared. Still doubt is like a draft that blows though the house. You immediately try to find where the cold air is coming from, and close it off, but it can return. Similarly, anxiety creeps in despite my wish to close it out. Crizotinib has positive effects on 90 % of recipients but the mutation can change.

When an interviewer asked Thich Nhat Hanh, “Are you always this peaceful?” The Buddhist Monk didn’t say yes or no.

“This is my training, this is my practice,” he said, and smiled. By extension, being positive is an action step, a practice, as the great Monk reminds me. Luckily it has spilled over into my actions. I’ve received radiation on my back that has relieved my pain. I’ve set my mind to being hopeful while I lie on the table and hear the beams moving through me. I’ve used visualization techniques, breathing techniques; I’ve called on my childhood God. But the fact remains; I can’t contain the whirlwind in my head all the time. My worst thoughts will often try to stage a coup. This is okay when it happens, too. In the meantime, I have five radiation appointments left followed by a two week rest. Then the chemo pills start and the positive thinking, of course.