Five Minutes

This is the worst thing that's ever going to happen to me. I sit with that knowledge for a while.

I'm 36 years old and this is my one cross to bear. Everybody gets a tragedy.

If I survive this, I will not be waiting for the other shoe to drop. There is no other shoe.

I feel a measure of what seems a little like comfort. I hold on. I can just about do this. This is what passes for okay news now.

Except that it takes me almost no time to realize that the floor underneath me is fake.

There is no one in charge here. There is no one doling out trouble, one per person, one at a time, only what that person can handle.

There is no universe that owes me a damn thing. Shit is random. Nobody is organizing it. Nobody is making sure anything is fair.

Years later, this is still my greatest tragedy but I'm no stranger to bad news. I'm that person who walks into eyes of hurricanes. I don't look away. I'd do that for you. You wouldn't even have to ask.

Not everything is bad. Some people died. Others survived. The survivors are here with me now. They turn up at the most opportune times. They say wise things. The kindness of other people!

I laugh so hard I almost forget to breathe. I see beauty in rubbish and sidewalk cracks.

With everything bitter there is some sweet. I still don't know what's going to happen, though.

Bring it on, I say to all of it.


From the archives:
Hospital Corridor 
All of the roads they did lead here
The very second you lost me

I'm not going anywhere

I made sure to look decent whenever I went over to see him. It was a dire situation. He didn't need me showing up there looking like hell warmed over. Besides, I didn't want him to know how worried I was.

I'd gone over for several days in a row. It was decided that I should take a day off. A friend of mine suggested it. I ran with it.

So the next day I woke up with the knowledge that I was not going to leave the house. I wasn't going over to his house or anyone else's. I had no appointments. I wasn't expected at either of my kids' schools. The farthest I'd be walking would be to the laundry room.

The thing I remember most  about that day was getting dressed. The clothes selected themselves.

I put on my Camp Sunshine sweatpants. The elastic was shot, but they still stayed up. The Camp Sunshine logo was almost worn away. It looked like peeling paint.

I topped it off with a long sleeved, ultramarine blue tee shirt. The design looks slightly Buddhist. It's fancy font invites you to Imagine A World Without Cancer.

It turns out the shirt, acquired on account of being a Cancer mom, and unfortunately, also a bereaved mom, was  somewhat applicable to my current predicament. Because of fucking cancer.

The pants too, but less directly.

Finally, I rounded off my statement with thick green socks with treads at the bottoms. These are hospital socks. They gave them to me at the UrgentCare center when I broke my ankle. They stretched one over my splinted foot to prepare for my trip home. I put the other one in my bag.

The best thing about the clothes and socks were their comfort. I was clearly engaging in what lifestyle blogs call extreme self care. Not facial masks, cleanses or a spa. My version of it.

The second best thing about the three elements were that they are all on a list of items that I am only allowed to wear around the house. I used to wear these things out in public. Since that time, I have raised my standards considerably.

It was appealing to wear a tee shirt at home that I could never wear to visit him. He could no longer imagine a world without cancer. It would be pointless to try. It would be a terrible idea to wear it in front of him. Besides, as I've indicated earlier, it isn't even flattering.

But I was free to imagine a world without cancer in my own home.

I luxuriated in looking bad but feeling good. Sometimes I caught sight of myself in a mirror. The worse I looked the better I liked it.

I don't remember much else about that day. It was not a watershed day in terms of accomplishment. I have some positive memories about it, even as the details blur.

Right after that, things took a terrible turn. There were emergency trips to see him. There were emergency phone calls to help him.

Laundry was the last thing on my mind. One of the last times I went, but not the very last time, I broke down and wore the Camp Sunshine pants. Most of my other clothes were dirty.

Another friend was there visiting with me. Sweatpants, he said. It was without judgement. It was a statement of fact. For him, this was an unexpected development. Yes, I said.

When I bought the Camp Sunshine pants, I believed that I would never throw them out. But not long after he died, I brought them to fabric recycling. They developed holes. They no longer stayed up. I was okay with it. Especially under the circumstances.

I'm not ready to write much about him yet. I'm not even prepared to write about his clothes. Writing about my own clothes is about the best I can do.



Read more:
The Best Thing Someone Never Said To Me
What I know, what I don't know
Lying In Wait 

What I know, what I don't know

It’s a shift.

I know without a doubt. This corridor is narrow.  It’s unmistakable.

There's no argue, no negotiate. You don't work it out with what is. 

After a time, a minute, maybe an hour, there's a small bit of wiggle room. 

I realize I know what. What is what I've been talking about.

What I don't know is where and most importantly when. 

Knowing what I don't know makes it sort of okay.

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The Best Thing Someone Never Said to Me.

The Emperor Of All PBS Documentaries

Besides being a parent to two healthy teenagers I am also a cancer mom. Cancer mom might not be the nicest way of describing it. But it does get the point across fast.

I'm Jacob's mom. He went through surgeries, chemotherapy and stem cell transplant with Jeremy and I at his side. He died at the age of two and a half from a type of childhood cancer that confounded his medical team with its voracity.

I can understand why cancer moms such as myself might not want to watch Cancer: Emperor of All Maladies on PBS. It could be too close for comfort. I wouldn't be surprised if I didn't want to watch.

It turns out that I did want to watch. I watch it and I'm rapt.

The Emperor of All Maladies is based on a book of the same title by Siddhartha Mukherjee. I didn't read the book. I'm a big reader, so initially it was surprising why I didn't. Watching the documentary made me remember something important about myself. Maybe you'll be able to relate to what I am saying.

When it comes to loaded topics like cancer, I like to get my information from people rather than the printed page. When Jacob was diagnosed and treated, the Internet was up and running albeit differently from today. Other cancer moms at the hospital and clinic would stay up at night looking things up. I didn't.

I didn't read books either. My one experience was with a resource guide given out by a children's brain tumor organization. Right after his surgery, I read about Jacob's tumor type in there. The neurosurgeon practically had to talk me down from the ledge. He told me that the information was outdated. He said that there were details in the book that didn't pertain to Jacob. I wouldn't read that book if I were you, he said.

I had plenty of questions, of course. They'd occur to me during oncology meetings, surgical consults and follow up appointments. They'd come up during blood transfusions, in the MRI suite and the recovery room. When I was at home I'd write the questions down and ask them when I saw a member of the medical team.

When I asked my questions, I was never brushed off, rushed or seen as silly. People took their time. They shared their knowledge. One of the things that Jeremy and I discovered was that, oftentimes, excellent doctors are also gifted teachers. Same with the nurses.

The compassion they showed, the empathy, their choice of words, their analogies, their drawings, their ability to explain and their willingness  to actually be present with us at our toughest moments is still something I think about daily.

The Emperor of All Maladies reminded me of this. The oncologists profiled were serving patients and families in every way. Yes, this is a documentary about cancer. It is just as much a documentary about people.

The doctors, researchers, historians, patients, writers - some of the people were one of these things, some were most of these things - were teachers that I could understand and relate to. Learning about cancer from these people made it something I could hear.

I read about a lot of things. It can be deeply satisfying to be scholarly and alone. Reading about cancer is an exception. Reading about cancer makes me a lonesome scholar. When it comes to cancer, I need inspiration, faces and conversation. The Emperor of All Maladies gave me that.

I hope I don't get cancer. I do some preventive things in an attempt to avoid cancer. I follow screening recommendations in hopes of catching any cancer at an early and optimally treatable phase.

I hope that no one else close to me gets cancer. But there are no quotas. There is no one in charge of cancer. Just because Jacob had cancer does not mean I'm finished with cancer.

The statistics are clear. One out of three women will be diagnosed with cancer. One out of two men will. It seems like a no brainer that some of the people I am close to will get cancer. I might get cancer.

Now that I've seen the Emperor of all Maladies, my perspective has shifted. I carried some assumptions now that I no longer have. For this reason, I anticipate having different, more nuanced and complicated questions than I would have before watching the documentary. That oncology meeting will have a smarter and more connected person in the passenger seat. Or the driver's seat, if I am the one with the cancer.

I've already written about the Emperor of All Maladies from the perspective of a cancer mom who likes a human connection when it comes to learning about cancer. But this isn't everything. There is more to be admired than just that.

The Emperor of All Maladies is a masterful documentary both apart from and intertwined with the subject matter. I expected it to engage my intellect, my cancer activism, and my concern. It accomplished these things. But it also connected with me as a creative person.

Rich imagery and lots of it. Vintage photographs and film clips that brought the history alive. Knowing when to be quick and knowing when to linger. Engaging with my aesthetic sense. Weaving it all together with beautiful music. A feast for the eyes and ears while never losing the gravitas or mission.

As a documentary it's right up there with the best of them. It's an education and a work of art rolled into one. No wonder it had my undivided attention.

Read or watch The Emperor Of All Maladies.

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