Unsanitary

Once our son’s pediatric oncology nurse teaches us how to wash our hands, we will never again use the melted and misshapen bar of soap in the clammy puddle of cloudy water. We will cringe at the sight of the limp, damp, terry cloth hand towel provided in other people’s bathrooms. 

Our child died. It wasn’t from opportunistic infections or carelessness. It was from cancer. All of the germ fighting things we did for him so that he could sustain the strong treatments we hoped would save his life remain with me. There were times when he had zero white blood cells. He still died but at least we controlled the things we could. His death is 100 percent, but my regrets around him are zero. 

So when a pandemic hits, it’s like riding a bike.

While other people are still moving in slow motion, I leave my old life behind without looking back. Everyone is immunocompromised when it comes to COVID-19. The implications are massive and unwieldy.

Soon my hands develop eczema from all of the washing. This too, is familiar. I take the recommendations of epidemiologists and  then embellish them all  for good measure. My doorknobs gleam. 

I don’t game the rules, finding a little loophole here or there. 

Before my child developed pediatric cancer, I was just like the rest of you. I call other parents, unscarred by chemotherapy regimens or pint-sized caskets, civilians. 

Civilians live in a place I can observe but not access. You do not have flashbacks of the moment your child died. You do not have what psychologists call intrusive thoughts that come uninvited, superimpose that death onto surviving family members in crystal-clear details that can only be described as hyperrealism.

Make no mistake. I have no desire to edify or initiate you. I don’t want you wearing my shoes or walking in them. I want you cosseted in innocence because the alternative is just too tragic.

But this pandemic is a beast of unnatural proportions. Would it hurt you to be a little more careful, watchful, aware? Of the children you’ve been gifted? Or, while you are at it, yourselves? 

From the archives:

Before, then, wide open

Rending

The sun it did rise again

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

Hospital Corridor

As we were wheeling Jacob to CAT scan, she looked at Jeremy and me. Do you have other children? she asked. No, I said.

She shook her head back and forth making a tsk tsk sound with her mouth. I don't remember much about her except she was heavyset and hopefully close to retirement. She had large wet eyes lolling with pity. Our plight made her exhausted.

We moved on quickly. We had somewhere to be. Also, the only way through this was through it.

Later, after all of the screaming, crying, testing, surgery, pathology reports, meetings with oncologists and more imaging, we had a lay of the land. Jacob's prognostic indicators were high. His tumor type was exquisitely sensitive to chemotherapy. The neurosurgeon in particular had a lithe way with words.

I carried Jacob's good prognosis through a lot of places. I took it over to that long, ugly hallway where the lady gave her sorry assessment of the three of us. I slapped her again and again with Jacob's good news. I didn't  do this for real, but it's vivid in my mind anyway.

Much later, after all was said and done and Jacob had landed on the wrong side of the prognosis, the not a home run side, the sorry side, I realize that the lady was indeed right. But it was not helpful to write Jacob off so early on. She shouldn't have done that.

But yeah, skipping over the optimism, the treatments and the clean scans, she had it correct in the end. She can still go fuck herself because one thing I learned is that hope based on solid evidence is never wasted.

It's odd to think of her now. I imagine her laying her head down one last time, welcoming death, weary from years spent in that hospital, witness to people like us.

It was her time. She's in a better place now. Stuff that people say when someone dies from natural causes at more or less the acceptable time. Things we never hear about Jacob, at least not out loud or within earshot.


From the archives:
The Best Thing Someone Never Said To Me
So Long
Nothing

Time, As Few Of Us Know It

Kids grow up so fast. In the blink of an eye.

The days are long, the years are short. And so on.

Blah, blah.

Kids grow up so fast except when they don't.

And when they don't, the years are pretty damn long.

Truisms are truisms, but not for everybody.


From the archives:
The Best Thing Somebody Never Said To Me

Off-White

So Long 

Crisis Sidestepped And Averted

I'm at the pediatrician's office with my teenager. She's been complaining about something for a few days. She's had no response to the mild OTC interventions we've tried. I'm concerned but not alarmed. 

The doctor seeing her today is not her primary, but a familiar member of the practice. He's kind and smart. 

The bright young pediatrician is full of vigor and calmly focused in spite of this visit being late on a Friday afternoon. He is also perplexed.

His brow is furrowed. My daughter's symptoms and presentation are not fitting neatly into a box. I recognize this phenomenon immediately. 

My teen is having a comfortable exchange. I go back and forth with a series of questions to attempt to break through the flummox. The doctor is giving me non verbal signs of his uncertainty without sharing his process.

Her primary is different. She and I are partnered up and a well oiled machine. She gives a lot of information. She narrates her line of thinking. She goes three steps ahead without my asking. She goes to the worst case scenarios, none of which are ever terrible. 

She treats me as a colleague. 

This doctor answers my direct questions. Her heart sounds fine. Her lungs sound fine. 

The meds we were giving her are apparently a joke. We gave them to her because we knew it would never hurt her I said. We laugh.

He gives us a line of treatment. This treatment would also serve as a diagnosis. When you give this medication, something different and  stronger than the one we were using before, you should see some improvement after three days. The medication working would serve as a reasonable diagnosis even though some of her symptoms point to this and some don't.

If we see no improvement after three days, we should bring her back.

My daughter seems fine. She's gathering her things and getting ready to leave. She's comfortable with what the doctor has said. She can deal with taking a pill twice a day.

An emergency is brewing. This one is mine.

I recognize the signs, less frequent than they used to be, but unmistakable. I'm feeling lightheaded and standing now would be inadvisable. A sense of unreality has crept in and is gaining momentum.  I am out of my depth.

I am clear headed and quick in a crisis, including my own.

I have not studied method acting, but know its basic principle. I tap into the part of me that remembers being competent  and calm. 

In a performance worthy of Meryl Streep, I smile at my daughter and the doctor. I ask her to meet me in the waiting room because I have a private matter to discuss with the doctor. It's about her brother.

She's used to this. Sometimes I actually need to discuss her younger brother, who is healthy but larger than life. But sometimes, it's something else. This is one of her primary doctor's favorite methods. It gives the two of us a chance to talk about the child privately.

The door closes. I lied, I say. I know, he says.

I come clean.

I'm having a panic attack and some PTSD. I say. If I don't have this conversation with you now, I'm going to pass out. I don't want any of this happening in front of my daughter.

He sits down. I have his full attention.

My eldest child  died. I say. He had a rare form of pediatric cancer. It is nothing like what we are experiencing here. The presentation was completely different.

The doctor is surprised and sympathetic. I see his demeanor shift. He's starting to straighten up. He's taking charge.

As a result of this trauma, I say, ambiguity is sometimes an issue with me. That's why we need this additional conversation. 

I have delivered my one minute elevator speech honed by years of taking care of children in the wake of what happened to Jacob.

The doctor nods. 

Do kids have heart attacks? I ask. Is she going to need to see a cardiologist?

He is definite. No. There is no heart attack happening. There is no cardiac concern.

I'm glad you said something he said. It's probably in the chart but I apologize that I didn't look. 

That's no problem I say. I mean it. I spent 40 minutes watching this doctor rush from one exam room to the next. Most of the kids were screaming. 

Thank you for taking the time. I say. I'm honored to do it, he says. He means it.

I feel the blood rushing back to my face. I know I'm pinking up. The conversation turns ordinary.

This child feels everything intensely I say. Sometimes things clear up on their own and we never really know what they are. She reports things other kids wouldn't necessarily notice.

Chances are, when she feels she is being addressed, her symptoms will improve, I say. She'll take some of the meds and frankly it will most likely work. 

The doctor feels this is a reasonable assessment. He reiterates that he feels there is nothing critical or urgent happening with my child. He also mentions that he is on call this weekend if I want her seen again or need to talk on the phone.

I know what is going to happen after I leave. Even though he's had a busy day - exhausting really - he'll phone our primary or the senior member of the practice. He'll run it by them. 

The next time I see him, he will remember me and my story. He'll anticipate that I may have extra questions. Since he seems to be a fast learner, he may even fill in the blanks when I haven't asked.  He'll be extra careful even when he doesn't need to, and I'll appreciate the effort.

I may have  gained a new colleague. It's okay if he's not. Not every doctor needs to be a hero as long as some of them are.

In a In a couple of days  there will continue to be something in the situation that is more grey than black and white. She'll be improved but not all the way. There will be  will be  a lot rolling around in my hopper.

I'll I remember every single mom from my support groups. Most of the moms in this group had kids who died from cancer. But one of them had an issue that initially presented with something like this only more severe, It congenital and uncommon. The kid kid died stunningly fast. 

I'll think about this. As a concern it won't take on its own life. My daughter wwill be hearty, bright eyed and not exhausted. She'll be too energetic and wholly herself to have this problem. Just like today.

Some things need some extra days to truly show themselves. They take on clarity with time and the only thing to do is wait. I'll check back in with her often but not too often.

There might be an additional phone call. There could be a visit with her primary or a specialist. Or this could be the end of the road. The symptom will disappear as mysteriously as it arrives.

None of these scenarios involve a watershed day where life as we know it changes forever. It's possible, but very, very improbable. 

This I know. Nobody else can teach you this stuff. It's experienced, amassed, cataloged, saved then accessed. It's sorted, pruned re-sorted and re-experienced. 

Hindsight and present day are deft in their collaboration. Eighteen years at this job has taught me a lot. Thanks to these doctors-slash-colleagues, I'm hitting my stride. I'm doing this thing and I'm up for the task.

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The Emperor of All PBS Documentaries 

Nothing

I'm standing in Times Square. They're lighting it gold for childhood cancer awareness. I am physically present. I'm there but not there.

I've been on Facebook, but am scrolling by a lot of the posting if it is about childhood cancer. I'm walking down the street when the words “awareness fatigue” pop into my head. The words stay. They fit.

I am not sharing pictures of Jacob on social media.  I only want to do that if it's not about cancer. He was more than just cancer. Even when he had cancer his personhood transcended that.

I'm not into him being a spokesperson. I am not making him a mascot. I'm leaving him be. This feels odd to say because he died. But he has better things to do.

I have better things to do with him.

We run into some nice people at Times Square. Childhood Cancer is like a small town. Everyone knows one another.

Hannah is with us. Noah is not. One of our friends asks after him. Noah doesn’t do awareness, Jeremy says.

A warm feeling envelops me. This is the best thing I’ve heard anyone say all day.

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The Best Thing Someone Never Said To Me

Rubric

Hotdogs

Blue About Gold

September is Childhood Cancer Awareness Month. Ashley was a healthy child just like yours for six years before her leukemia diagnosis. If you think that Childhood Cancer can’t happen to your child or your family you are sadly mistaken. Childhood Cancer is not rare. Help spread awareness. Go Gold!

These are not the actual words of any one individual. It is a composite of many statements I have seen in my news feeds on Facebook and Twitter, shouted in rallies, and mailed to me in fundraising letters. Names have been changed. Words have been changed.  I re-worked it but I didn't write it. I wouldn't write it.

The rest of this writing is mine. I am addressing this to parents of healthy kids. Your kid doesn't have cancer. None of your kids ever had cancer. You are not a bereaved mom or dad. You are a regular parent doing more or less the best you can.

I'm giving you a heads up in case you see something like this in your newsfeed or inbox or your snail mail. I'm showing you this now because you might hear something similar on TV. Childhood cancer is making the rounds.

The Childhood Cancer community might seem like one big cohesive group. The truth is that childhood cancer advocacy is made up of individuals. As such, I often agree with other voices in this community. But sometimes I disagree.

This is one of those disagreeing times. There are a lot more days in September. If I didn't say something now, I’d be losing my mind until October, when some of the more vocal childhood cancer people start begrudging the breast cancer people their success.

The statement above is hitting below the belt.

Don't go there. Don't take it to heart.

If you want to join my family in Times Square this September, you are invited. They're lighting it gold for September.

If you want to wear a yellow shirt or a gold ribbon, I'd be thrilled. If you take a moment to remember Jacob or kids like him, that means a lot. You can make a donation here and feel good about kids with cancer getting the best possible care.

If you want to organize a fundraiser with your kids' school or at work, let us know. We can help you get started.

If you want to help kids with cancer by all means do so.

It is possible - but not probable - that your child may get cancer. It is true that Jacob was healthy until he wasn't. No one can say which kid will get cancer.

Childhood cancer is not one big disease. It's actually a lot of different cancers under an umbrella. "Find a cure for childhood cancer" sounds oddly inaccurate to me. Finding cures for medulloblastoma, ALL, Wilm's tumor and neuroblastoma is more like it.

The chances of Jacob being diagnosed with his particular cancer type were approximately one  in 4,500. When you factor in his age at diagnosis, the unusual presentation, and other features, he may have been the only child in the world with his exact diagnosis at that exact time.

Numbers are numbers until it hits home. Once Jacob was diagnosed, the situation was 100 percent.

I'm not going to get into numbers for childhood cancer in general. Even one is too many.

But the odds are still overwhelmingly in your favor. The child you wished for, the one who is toddling around, the one starting school, the one starting college is probably not going to be diagnosed with childhood cancer.

Most likely, when all is said and done, if you're reading this now, cancer is going to happen to someone else's kid.

So if you want to help - a donation, a fundraiser - hell, a thumbs up - do it altruistically, or because of some other kid, my kid, me, or an idea. People help other people all the time.

You have my permission to put fear about childhood cancer touching your children out of your mind. It is unfair and unnecessary to ask you to go there.

Here's the thing. I'm different from you. My child had cancer. But I'm also the same.

I have two other kids. These kids are healthy. They are teenagers. They've made it this far. They're both doing great. There are no guarantees. But I am so hopeful.

When I see a post or promotion asking for my help and there is urgency because my child might be next then I know I am being manipulated in the most egregious way. I received a snail mail from St. Jude to this effect. I took the free address labels and ripped up the letter.

I am a childhood cancer activist. But I am fair. I won't use Jacob's memory to scare and coerce people with healthy kids.

My yellow ribbon is borne out of heartache and loss. That said, my September gold comes with a responsibility and positive mission.  We all have choices about what to do with our portion of that gold ribbon. Here's what I'm doing with mine.

You can join Jeremy and I along with Hope & Heroes in Times Square, which is lighting gold in honor of Childhood Cancer Awareness Month on September 17th.

Camp Sunshine invites families touched by Childhood Cancer and bereaved families to camp, for fun, fellowship and support. Donate here.

I’m really inspired by the work  - and fashion - Bravehoods is engaged in.

This image is a thorn in my side and is making the rounds.

Awareness, targeted research, and funding save lives. Sour grapes about breast cancer success doesn’t.

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Hotdogs

Rubric 

I Will Say The Wrong Thing

I've been a member of a lot of support groups. Support groups for cancer moms. Support groups for grieving moms. Some have been on the phone. Some have been in person, with people sitting in chairs, arranged in a circle. Some have been email groups. I've never done the chat room.

These are the kind of groups I have done. Perhaps you have participated in groups yourself. If you've been to Weight Watchers meetings, then that is a support group. Same with AA meetings. There are message boards for people in treatment for almost every disease process.

The reason you are in this group, with other people with a similar profile is that you need some kind of support you are not getting from your day-to-day life.  At least some of these people get you. Like it or not, they might be the only ones who do.

Every support group is different. But here is a common thread I've noticed among all of them.

There will be a point at the meeting when someone - you or another group member - tell a terrible story about someone in your personal life who said or did the wrong thing. You can pretty much count on some or all of the people present to commiserate with you. Sometimes the social worker or therapist facilitating the group will be quiet and listen to what all of the participants have to say. Other times, if the wrong thing is bad enough, they will join in the commiserating.

If you are telling such a story, chances are, as unique as the situation feels to you, someone else will pipe in that their boss, mother in law or crazy neighbor said the same thing. You feel sorry for this other person. But it's good to be understood.

There was one time when Jeremy and I told a story about someone saying a wrong thing that no one else in the group had heard. The group members were silenced for several minutes. People just stared. Even the people who never stop talking stopped talking. After a bit, they shook their heads.

It is important to have a safe place to vent. It is important to feel validated.

For a long time, I was too busy telling terrible stories, listening to terrible stories and commiserating with people about their terrible stories  to think about what I am about to say. When I had a little bit of mental bandwidth I thought about it a little. Once I had more bandwidth I thought about it quite a lot.

I will say the wrong thing.

I will be that person who someone brings up in the support group.  No one wants to be that person.

People who haven't been to a lot of support groups might not even think about this. They don't know what goes on in these places.

I've been careful. If someone says they are on a diet and going to Weight Watchers, then I'm not going to bake a chocolate cake, cut myself a big slice and eat it lustily in front of them. I want to be supportive. I don't want to be branded as the food pusher at the Weight Watchers meeting.

It wouldn't occur to me to ever ask an adoptive parent who the "real" mom is, tell a grieving person to snap out of it, assume a woman wearing a diaphanous blouse is pregnant, or pat a man's spare tire. The only reason I know about this is either from witnessing or reading about it.

Then there's the things I think, but don't say. Shouldn't that kid be in bed? I think you're on the Autism Spectrum.

There are lists published daily about what not to say.

Part of what worries me is that there are so many lists of things not to say to new parents, the infertile, the childless by choice, the moms of kids with dyslexia, the moms with dyslexia, the newly retired, the newly religious, prodigies, insomniacs, people with chronic illness, the obese, people who have lost their jobs, people who have lost their pets, the Gluten Intolerant, and people who have many competing multiple issues that there are too many potential bad things to remember. I'm afraid that I might forget something I'm not supposed to say.

To further complicate matters, no two people are alike. Every cancer mom I've ever talked to hated it when people brought up the idea of them having another child. They're insulted that anyone would say such a thing. They feel that there is an implication that the sick child can be replaced with a healthy one.

It turns out that two people gently brought up more children after Jacob was diagnosed. In my case, I wasn't insulted. I didn't think they were asking me to replace Jacob. My feeling was one of support and encouragement. I'm left happy that these two people didn't get the memo. Because for me, they actually said the right thing.

In spite of being careful, I have said the wrong thing. My wrong things seem to fit into three basic categories.

The canary in the coalmine

I'll notice something. I will often be the first to notice something. Other people do not notice or are not ready to notice. They feel I am being ridiculous. I have said the wrong thing. Then weeks, months or years later, they notice the same thing I did some time ago. But when I said it, it was too early. Now I try to wade in more gently. I made this improvement the other day and it worked out. But I'll probably say the wrong thing again. It's not easy being this canary.

Letting the cat out of the bag that I didn't know was in the bag

Sometimes I talk about things that are taboo to other people. I seem to have fewer topics that feel taboo for me. I'm not big on certain kinds of euphemisms. I don't know why people are ashamed or secretive about such things. But I need to remember this and respect them.

So I will inadvertently let something drop that was supposed to be covered up. It isn't a surprise party kind of thing. It isn't something that someone told me in confidence. Its something I was supposed to know not to talk about.

So now if I have something like that to say, I might just have to zip it. Or use a whisper voice.

Giving the wrong advice when the person just wanted to vent

The person will seem to be asking for advice. I give some advice. I give reasons for my advice. Then it turns out that my advice is crappy. I have said the wrong thing.

The next time someone seems to be asking for advice I'll ask them directly if they want advice or if they really just want to vent. If they say they want advice, I might remind them how crappy my advice was the last time.

There are probably people who do not care that they said the wrong thing. I'm not one of them. When I say the canary in the coalmine wrong thing or the cat out of the bag wrong thing I remember it forever. It becomes a hot memory.

Just thinking about being that person in someone's support group gives me the same deeply embarrassed feeling that is hard to live with, even though I won’t be there to witness it.

After a long-suffering time, I decided a different approach was in order.

I've come to accept that in spite of my best efforts and in spite of my awareness of what gets me into the most hot water, I will say the wrong thing. Allowing myself to think about patterns of saying the wrong thing and admitting that saying the wrong thing is something I do took some of the sting out of it.

The next thing is to figure out what to do when I say the wrong thing again.

I've apologized of course. But I'm thinking that maybe asking the other person what else I could do to make them feel better would be good. I might put forth some suggestions.

Sometimes I'll be the one saying the wrong thing. Other times I'll be on the receiving end.

A person I have known for a long time said something to me. Unfortunately, it's playing over and over again in my head like a broken record. I feel unmoored. They have said the wrong thing.

If this were a bereaved parent bad thing, I could take it to a chat room I've been invited to. I could call my very best Camp Sunshine friend.

This particular wrong statement is homeless. I'm not in that kind of support group.  I've thought about joining a support group about this topic. Unfortunately this topic has me so busy that I haven't looked for one, which is ironic.

This wrong thing that someone said needs an audience. I'm thinking if I'm this upset that the support group might need to move from the back burner to the front one. Things that don't bead up and roll off are a message. The message isn't for the person who said the wrong thing. The message is for me.

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July 1999

It was a month after Jacob died. Hannah was six months old. We were spending a hot and humid few days in the Berkshires with our extended family. Jeremy and I took Hannah to the beach to splash around. We were walking her in the stroller back to the house.

We recognized a car that belonged to one of Jeremy's siblings. It may have been a rental.  It was stuffed to the gills with children, parents and stuff. It was a right squeeze-up in there. In this state it reminded me of one of those clown cars you see at the circus. It sped by us. It seemed like they didn't see us. Or maybe they were in a hurry.

We arrived at the house to greet Jeremy's dad who was there by himself. My mother in law was playing tennis. Hannah fell asleep in her stroller. We wheeled her into a quiet room so she could finish her stroller nap.

Jeremy's dad seemed confused. Why aren't you at the pool party? He asked.

Jeremy and I were mystified. What pool party?

My father in law looked annoyed. They didn't tell you about it? We shook our heads. The three of us sat down at the dining room table. Jeremy's dad proceeded to decant pills and vitamins into shot glasses.

After a few minutes he said, they really should have invited you.

Jeremy said that he wasn't sure he wanted to go to a pool party anyway.

The three of us sat quietly for a few more minutes. One of the things I like about most men is that they don't always feel the need to fill in the silence with chatter.

I think I know why they didn't invite us I said. My father in law looked up. We locked eyes. We both looked at Jeremy who was reading the newspaper.

We all went back to what we were doing. The decanting. Jeremy started the crossword puzzle. I continued sitting in the chair and staring vacantly.

After a few more quiet minutes I said, I could be wrong. Maybe I'm reading too much into it.

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Aftermath

The Best Thing Someone Never Said to Me

I'm at Jacob's memorial service. I just finished eulogizing him. He's two years old.

In order to help me, I think about Jackie Kennedy. I feel I am cut from stronger cloth than most people. And so I am.

There is a reception afterwards. Various people express their condolences.

An older gentleman named Ben approaches Jeremy and me. He is an old friend of my father-in-law's.

He clasps both of my hands in his. He looks into my eyes. He is clearly struggling. He does this for some time without saying anything.

When he finally speaks, this is what he says. There are no words. There are no words he repeats. He doesn't say anything else.

He continues to hold my hands. He keeps eye contact. Thank you, I say.

I will never forget this. I will never forget what he said because it is perfect.

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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This daughter of mine

Unabashed pink, sturdy girlhood

There’s nothing to suggest in that ladybug smile

Or curls lilting with the melody

That track three of the Stephen Foster songbook

Could be the perfect song for a baby girl’s funeral.

I planned every inch of this healthy child

From her conception to now this memorial.

Unwelcome, unbidden, good ideas for bad.

You could slap me with your words and I would not blame you

Understand this.

I have travelled to funeral homes

Held tiny, exquisite urns in my hands

Seen Lilliputian caskets too small to truly contain a life

The funeral processions should have been held in a doll’s house

I drink her up and swing her about

No other baby of mine

Will rest in a dark box I had to choose

You beg me for euphemisms but I can’t help you.

I fold up my map

I try to put it away

But it has been folded and refolded

Shaped, cut and put together

By hands too small too write their own names

This poem was adapted from one I wrote about 15 years ago. I happened upon recently while packing files to prepare for our apartment renovation. I had completely forgotten that I ever wrote it - wrote anything - having put it away as soon as I hurriedly penned it.

I wrote this soon after my son Jacob died and an adorable girl was inching her way into our hearts. It accurately reflects the feelings I was having at the time – considerable post- traumatic stress from my child dying, and ever-present fears for my surviving child. I was also supporting other parents whose children died from cancer by attending funerals and being present for them.

I’m grateful to have come across this writing. This is a record of what happened. This is a record of the distance I have come and the two times connecting.

I didn’t have a blog then. There weren’t blogs then. But I did write just a little. The seeds were planted. And here they are.

They Create: Jeremy Shatan’s Playful Paper Cut-Outs

I’ve said it before. My husband, Jeremy Shatan, is a Renaissance man.

He raises money to help children with cancer. He is a serious baker. He’s an avid skier. He writes about music for his blog, AnEarful.

He does too many things well to list them all here. In addition to all of the other stuff he works on, Jeremy also makes these whimsical and wonderful paper cut-outs.

Ever since we became a couple, Jeremy and I have always been intent on creating our own holiday traditions. We tend to take classic elements from Halloween, Thanksgiving, birthdays, Christmas, and Chanukah, and give them a unique spin. We pick and choose what we like, discard what we don’t, then reinvent the rest.

Jeremy began making the paper cutouts as alternative to commercial, mass-produced decorations when our children were very small. We are still enjoying the first creations he made 17 years ago. Over the years, he's added to the collection, inspired by birthdays and other celebrations. They hang from our doorways and ceilings. They're affixed to our walls, windows and front door.

The paper cutouts are serving an even higher purpose now. Our firstborn, Jacob, inspired Jeremy's first cutouts and lots of other art, too. Jacob passed away from childhood cancer at the age of two and a half. Every year, we form a group called Team Jacob in his honor. We participate in a special walk to remember him and raise money to help children with cancer. You can learn more here.

For the last two years, Jeremy and I have created a theme for Team Jacob based on some of Jacob's favorite things. In 2013 our theme was the Granny Smith apple because not only was this one of Jacob's favorite foods, he also loved noticing apples everywhere we went.

When Jacob was being treated with chemotherapy, it was a challenge getting him to eat enough. So Jeremy made Jacob special waffles called Power Pack Waffles. They were loaded with the nutrition and calories Jacob needed. In 2014, Jacob's waffle became our theme.

I wanted to share Jeremy's thoughts, process and creations with you. So I interviewed him.

Describe what you remember about the early days of your paper cutouts. Why paper cutouts as opposed to paintings, photography or a different art form?

When it came time to celebrate Jacob's first birthday, I didn't like the commercial themes and designs of the stuff they sold for kids' parties back then. Since it was common to have wall and hanging decor made of heavy card stock, I thought I would just make my own. 

I wanted them to be simple shapes that Jacob could recognize - and I'm good at drawing simple things. At first I thought I would do imaginary bugs but then I decided on hippos, rhinos and elephants as they are easier to cut out and we had a history of buying stuffed animals of those creatures. 

When it came time to make them, I found it very easy to make a line drawing and then cut it out using an X-ACTO knife. I discovered a real affinity for that tool, enjoying the sensation of the blade cutting through paper. I often enter a flow state when I cut, a relaxed, focused mode where every instinct is the right one.

I never considered other media as photography was an involved process back then and I wasn't confident in my abilities with paint. I also like the absolutely graphic quality of colored paper, giving each element of the final product an even, overall color. 

Talk a little about how our friends and family have responded to your cutouts.

The best first audience for the cutouts was Jacob. We hung up the hippo, rhino and elephant from a beam in our apartment while he was napping before his first birthday party. When he woke up, I brought him out and held him up high, near the decorations. "Wow!" he said in a drawn out and clearly enunciated expression of wonder. At that moment I knew I had done something very special. Those three are still hanging in our apartment, 17 years later.

When it comes to the holiday cutouts, everyone has loved them. The feedback I've gotten tells me that people like the fresh approach to classic themes, somehow making stock images like wreaths and menorahs new to them again.

Having birthday parties for our kids year after year took the themes of the cutouts to a different level. Describe a birthday party or two and how you used the cutouts and other paper elements in your decor.

When Hannah was little, she got really into the circus. She liked anything to do with that form of entertainment so we made that the theme of her party. I really challenged myself with some of my most elaborate designs yet, including a decorated elephant standing on a drum and a trapeze artist swinging through the air. 

The year before that, we paid tribute to Hannah's well-rounded interests. She liked ducks, trucks, and globes ("Eart!" She would say, pointing) so that's what I made for her.  We would've had to buy three different sets to cover all those bases!

Noah's parties were fun because he was all boy, so that meant balls of all shapes and sizes one year and a three-car steam engine the next. 

Could you give our readers a paper cutout "recipe" along with some helpful hints? 

I always start with a sort of Platonic image in my mind: what would the perfect Santa hat look like? Of course, that image is filtered through my taste, memory and perception so it can't help but be an individualized idea. 

Once I have the image in my mind, I think about how I can achieve it using the minimum amount of elements. In the case of the Santa hat, I knew I would need a red triangle, a fluffy white brim and a fluffy ball for the top.  After choosing my paper, I draw each element, which is one translation of the image into reality, and then cut out the shape, which is another. I accept the changes that occur during this translation process - as long as I'm satisfied with the final results, of course. 

Then I glue everything together. If it's going to hang from the ceiling, then it needs to be double-sided, which means making two of every element, except for the central one (in this example, I only needed one red triangle) - another good reason to use as few pieces as possible. 

Here are some technical tips:

1. If you're unfamiliar with X-ACTO knives, experiment before your first project. Don't press - just drag your blade through the paper (I often think of molecules parting, believe it or not). Buy lots of blades and change them often. Dull blades rip paper. 

2. Splurge on glue. It can be seriously annoying to have all these beautiful bits of cut paper and then your final piece has all kinds of bubbles and bulges because you used Elmer's glue. I used to use this weird stuff that came in a white tub. I think I got it at Kate's Paperie.  In any case, go to a good store, ask their advice, and make no object of money. Cheap paper is fine - cheap glue is untenable. 

3. Have fun with it! If you enjoy the process then you can't help but be satisfied with the result. 

They Create: The Playful Paper Cutouts of Jeremy Shatan is the second in an ongoing series about creative people across many disciplines.

Read They Create: The Lego Artistry of Don Rice.

Halloween Cat

Acrobat for Hannah's circus birthday party

Jeremy made me Mother's Day and birthday cards using his beloved X-ACTO knife & glue

Detail of oft-worn Team Jacob granny smith apple shirt

Team Jacob wore the waffle in 2014

Thanksgiving pie, 3rd birthday clown & Christmas candy cane

This pumpkin is faded from many years of Halloween window display

Chanukah gelt