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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Talking With Me About Stimulant Medication

I've had experience talking with people about stimulant medication. I've had experience reading what people have written about stimulant medication. I've had experience reading Facebook posts about stimulant medication.

I have five years of experience supporting, managing, teaching and observing someone who takes stimulant medication.

Previous to and overlapping with that, I had several more years of experience supporting, managing, teaching and observing someone engaged in occupational, speech and language therapy and social skills group.

There are people I would like to talk to about stimulant medication. There are people I would not like to talk to about stimulant medication.

Now I have some rules for myself around talking about and reading about stimulant medication. They are the same rules I have for talking about and reading about ADHD.

This is not a 10 Things Not To Say list. Those lists bother me. They assume everyone is the same. This post is about my vantage point. That said, you might relate it to your particular situation or learn a few things. Any comments you make might teach me something too.

If you are a psychiatrist, psychologist, pediatrician, neurologist, neuropsychologist, family practitioner, nurse practitioner, developmental pediatrician or internist with experience working with those who take stimulant medication, then I would like to talk with you about ADHD and stimulant medication.

If you currently take stimulant medication I would like to talk with you. If a close family member takes stimulant medication then I would like to talk with you. I would like to hear what you have to say whether the experience has been good, bad or indifferent.

If your name is Dr. Ned Hallowell and have written a book called Driven to Distraction then I would like to talk with you. I also like to read what you write about ADHD and stimulant medication. You are welcome to contact me for conversation at any time.

If your children are exceptionally well behaved and you are wondering why all these kids are getting drugged up I have a feeling that a conversation about ADHD and stimulant medication would not go very well. It would be like me having an opinion about team sports. I don't play team sports. My kids don't play them. It didn't take. So I don't go around giving opinions on neighborhood baseball teams.

If you don't know anything about ADHD or stimulant medication and would like to ask me about it, I would welcome that.  If you are asking in the spirit of greater understanding then I would be more than willing to participate.

But if you have a lot of preconceived notions that you are very invested in, it might not be a satisfying conversation for either one of us.

If you like comparing carefully prescribed stimulant medication to crack, illegal amphetamines, speed, espresso, cold brewed coffee, tranquilizers or dark chocolate then it is unwise for me to engage with you on that subject.

If you have accidentally or purposely tried a tiny bit of someone else's stimulant medication and you yourself do not have ADD or ADHD, then I would love to have a conversation with you and compare notes.

If you are currently contemplating treatment for yourself because you've been struggling and these struggles are pointing you and your doctor to ADD, then you are welcome to talk with me. There are many people who learn more about themselves as adults. Adults who are self aware, change course and seek help are brave adults. I'll talk carefully with you and mostly listen.

If you are wrapping your mind around helping a child, then I know that in spite of what other people say and write that this is almost always a difficult decision and a multi-tiered one. I will walk on eggshells and you'll do most of the talking.

If you are a physical therapist, occupational therapist, speech and language pathologist or special education teacher with experience in this arena you are people I admire. I always want to hear what you have to say.

If you are a classroom teacher I like talking to you. You see a high volume of kids every day. That alone is worth the price of admission.

If you are Judith Warner and you have written a book called We've Got Issues: Children and Parents in the Age of Medication then I would like to personally thank you for writing it. You would be a person I would enjoy talking to about stimulant medication and ADHD.

If you are writing a book and want to say something about ADHD or stimulant medication, then do deep research and talk to real people walking the walk and the people who work with them. Otherwise, people like me see right through your book or article.

If the words Adderall Nation have crossed your lips or peppered your writing then you will find a lot of like-minded company, just not with me.

If you have no experience with this, whether you are a grandparent, a journalist, a friend, or a public figure, be humble. Own your inexperience. It's important to know when you are out of your depth. Know that you don't know.

If you are wondering if this person or that really needs stimulant medication consider that they may look like they don't need stimulant medication because they are in fact on stimulant medication. When they are not on stimulant medication is when they look like they need stimulant medication.

Think about it. There is beauty in this logic.

If you are thinking that your generation was better because nobody needed stimulant medication when you were coming up or when you were raising kids I find a conversation with you will be like talking to a brick wall.  There are gaping holes in what you are saying but its better to agree to disagree and change the subject.

If you feel the need to point out that there is no ADHD in France, and that French mothers are doing a categorically better job of parenting than American ones, then I don't want to talk with you about stimulant medication or ADHD. I will no longer read what you have to say.

If you are not a parent at all but have opinions about the use of stimulant medication in children then maybe you'd like my opinion on stuff I know nothing about—how about those Yankees?

In addition to all things already mentioned, I am skipping any conversation, article, podcast or reference to the Marshmallow Test. For personal reasons I have adopted a no Marshmallow Test policy.

The elevator speech version of the long-winded stuff I just wrote is this. If you are in the trenches, I'll talk to you. I'll read your book. If you are not in the trenches but know you are not in the trenches them I'll talk to you. All others, no. I'll talk to you about other stuff. Just not stimulant medication and ADHD.

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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 Book Will Mess With Your Head

Still Alice by Lisa Genova

A few months ago, Jeremy was invited to join a book group. I'm glad that Jeremy enjoys book group. But it turns out that there's also something in it for me. That something is a steady infusion of new books. The book group selects a different book every month. Jeremy reads the book. If it strikes my fancy, I read it when he's finished.

Still Alice by Lisa Genova struck my fancy.

It was lying around the apartment. I read the description on the back cover. I kept asking Jeremy if he was finished yet. I bothered him about it. As soon as he was done reading that book I grabbed it.

The book is about a woman named Alice who develops early onset Alzheimer's disease. That's it in a nutshell.

If you've already seen the movie Still Alice, then you might want to skip this review, scroll to the bottom, and read some of the other book reviews I've written there. I haven't seen the movie yet, in spite of loving the book. I've been extremely busy. I'll see it at my first opportunity because I've heard it's excellent and I love the acting of Julianne Moore.

If you haven't seen the movie or read the book you can decide to read it or not based on my experience. I meant to write this post earlier, before the movie came out. Like I said earlier, I've been busy.

Lisa Genova knows her stuff. She's a neuroscientist. But she's also a gifted writer and a true storyteller. If you're anything like me, you will not be able to put the book down.

In my case, I found every excuse imaginable to read the book. On an extremely crowded rush hour subway, I had it suspended above my head, using the same hand I used to hold the pole to prop the book open. I read it while eating. I read it at night until I couldn't keep my eyes open. I used the book as a reward for completing unsavory tasks. All of the time I would have been on Facebook and Twitter I spent reading the book instead.

As a result of this binge reading behavior I finished the book about 24 hours after I started it. For me, the hook was that it was the combination of a great narrative with elements of a thriller, and a relatable main character that's fictional but so vividly drawn that she seems real.

I loved getting to know Alice. She's a brilliant Harvard Professor, a wife and mother. I found out what it is like to be smarter than I am.

I'm a big believer in multiple intelligences. When I say that Alice is smarter than me, I mean that in an IQ way. Pre-Alzheimer's she's extremely gifted at learning information quickly, imprinting it and accessing that information and learning immediately when needed.

Alice isn't smarter than me when it comes to emotional intelligence, social skills or creativity. She has some qualities that get her into hot water. It isn't the Alzheimer's. It's Alice. She's a fully formed character with foibles. If she were a real person and I were her friend, I'd have some things to say about her interpersonal skills.

I'm IQ smart. The difference between Alice and me is that I need what I call scaffolding. I have lists. I need more exposures to new information, in more than one modality. I need prompts to find the information. I have always been this way. The thing that makes me smarter than I used to be is anticipating what I need. Once I have these things, I'm golden.

I could tell from reading the book and reading between the lines of the book that Alice didn't need any of this before the onset of her disease.

One of the classic themes this story is mining is the idea of falling from a precipice. In this case, tumbling down from a tall ivory tower.

Here’s the part that messed with my head. At first I thought it was just me. I'm empathic, and apparently this feeling extends to people in books.

Then Jeremy told me that it messed with a lot of people's heads at book group.

Alice is realistic. She's my age. The forgetting she does at the beginning of the book is reminiscent of things that have happened to everyone. Then, slowly, and then more quickly things take a turn.

Because things are subtle at first I became hyper aware of any forgetfulness, inattention, stupid thoughts, misplaced items and my lifelong poor sense of direction. Things that usually pass by unnoticed were front and center for a few days.

This was really uncomfortable.

What saved this book from being just a sad sack and sorry tale was its complexity. Obviously, what is happening to Alice and a lot of real people is tragic. I've read articles and memoirs by caregivers in the Alzheimer's community. But I've never read anything where I got such a clear sense of what It could be like to have this disease from the inside. The person with the disease.

Most things get worse. But a few things get better. It allows you to think about what makes you you. Intelligence is a lot. For some people it can seem like almost everything. But memory isn't everything. Being independent isn't everything.

Things happen in this book that are amazingly touching and accommodating. It stretches the idea of what people can accommodate within themselves. It stretches the idea of what other people can accommodate.

Even if it's painful, even as it made me feel paranoid for a few days, even as I was sad for Alice and her family, for me, learning more about other people and their experience always trumps all of this. There is a richness and a humanity to this story that keeps me engaged. Greater understanding of other people always feels worthwhile. The book inspired this understanding exceptionally well.

The book allowed me to walk in Alice's shoes in a way that was tactile and emotional. Still Alice made me experience the urgency of what needs to be done. It raised my personal awareness. That sounds like a cliché because the word awareness is used in so many contexts. It's not an ice bucket challenge. It’s a really-engrossing-story challenge. This book may just be the start of something big. I hope so.

Other posts about books:

The Gateway Book

This Book Changed My Life

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Incentives

There are things that I enjoy doing very much. Some of these things include reading, spending time with my family, watching TV, taking photographs, writing, making collages, hiking and socializing.

Then there are things that I don't really like and would rather not do. Some of these things, like swimming when it is below 95 degrees, zip-lining, watching the World Cup  and skiing, are things that can be easily avoided.   

Then there are things that I don't  like, but really should do them for my own good. One of these things is having a mammogram. Another one is having a Colonoscopy. 

We don't have much control over who gets cancer and who doesn't. I hope I  don't get cancer. However, the next best scenario to not getting cancer at all is to catch the cancer while it still very treatable. That is why I have these tests. 

The other reason I have the tests is because if I didn't, the doctor would talk to me about them too often. 

I have a great doctor. I don't want to use his real name, so I am going to refer to him as Dr. Isaac Moscowitz. He shares an office with his twin brother, who I will call Dr. Nathan Moscowitz. The twin brother is  a pulmonalogist. The part about the identical twin doctors is true. You really can't make this stuff up.

I could see the writing on the wall. I'd be going to Dr. Moskowitz with a sore throat and he'd be asking me about the colonoscopy. The man can be very persistent.  I don't want to talk with Dr. Moskowitz about my colon when I am there for a sore throat. So I just went ahead and made the appointment. I've already had the colonoscopy.

When it comes to mammograms, I'm more used to that. I've been going for the last 10 years. I used to get really worked up before going. I'm better about it now.

There are many reasons I am more relaxed about mammograms than I used to be. One of my coping mechanisms has to do with my deliberately working out a  system of incentives attached to going to the mammogram place.

There are incentives I have implemented for  before and during the mammogram, then additional incentives for after the mammogram. In addition to incentives that I've established on my own behalf, I've also discovered that there are certain rewards attached to the actual mammogram facility that I enjoy, but did not initiate.

Here is a typical mammogram experience.

I wake up in the morning, and I do my usual things except that I don't put on any deodorant, because the mammogram place doesn't want you to do that. I pack my deodorant for later.

Then I take the subway and then the bus to the mammogram place. That's where the first incentive kicks in. I am not allowed to do anything useful, like respond to email, make lists, work on Noah's IEP or research enrichments for the kids. I get to just read. I read whatever I want. 

I might read books or magazines, as long as they are not about ADHD, Autism , the NYC public school system, launching a career or attempting to renovate a small apartment. In other words, I get to luxuriate in totally useless, pleasurable reading. If I want to spend a long time on Facebook, I do it. 

I also love going into a special email folder called Blogs to Read which is exactly what it sounds like. The last time I had a mammogram, I read  what Gwyneth Paltrow wrote about Conscious Uncoupling. I read that I my iPad on the way there, then while I was in the mammogram room waiting for the radiologist, I read about Gwyneth Paltrow's uncoupling some more in a People Magazine they had in there.

Which brings me to the mammogram place itself. I always plan my mammograms for when my children are in school. One of the best things about the mammogram place is the lack of children. I've discovered that I can really get some solid peace and quiet in there. 

The lighting in the waiting room is dim and calming. They have some really good magazines there as long as I avoid any medical literature. The people are really nice.

By the time I'm actually having the mammogram, I'm reminding myself of the incentives I've planned for after the testing. That is because I am either contorting myself to get my breasts inside the machine, or waiting for the technician to talk with the radiologist and for the radiologist to ask her to do more views. The first couple of times this happened, I almost had a heart attack but now I'm used to it. The radiologist is just very thorough. More on that later.

Usually what happens is once the radiologist has enough views, I sit and wait for a bit, then Dr. Greenburg comes in to say that everything looks great. He always looks very cheerfuI while he is sharing the news that I don't have cancer. I  think it's very nice that he cares one way or the other.

His enthusiasm is contagious and It is with a sense of celebration that  I get dressed, put on deodorant. and then go to Shake Shack for lunch. Shake Shack for lunch is my reward for having gone to the mammogram place, contorted myself, traveled about with no deodorant on, had multiple views and then waited for Dr. Greenburg without freaking out.

I order whatever I want at Shake Shack without regard to any dietary guidelines or health implications .

There are situations involving the mammogram place that call for additional incentives.

About a year ago, I went to the mammogram place and the technician did many views at the request of the radiologist. Then instead of the usual routine they asked me to go into a separate smaller room. Dr. Greenburg came in and explained that there was an area that he was concerned about. He wanted to get an ultrasound of the area. 

I asked him a couple of questions. Did it look like cancer? He said that he wasn't yet sure what to make of it. Was the area in question big or small? He said that the area in question was very tiny. Okay, good, I said. It isn't some out of control, enormous, wildly metastatic cancer. 

He felt that my assessment of the situation was accurate. He also facilitated an immediate ultrasound. 

The people working there are always nice. But once they think there might be something wrong with you, then they are extra nice. They kept on checking on me while I was waiting for the ultrasound room to free up. They also said complimentary things about me to one another in hushed voices. One of them used the words chatty and cheerful.

While I was waiting, I thought a little bit about the possibility of cancer. I felt surprisingly calm about it. My hunch was telling me that I didn't have cancer. I figured that even if I did, it was a very tiny cancer. I'm always a glass half full person. I was thinking that a tiny cancer was better than a larger, more challenging cancerous area.

I was aware of becoming bored waiting around. I then noted how much my medically triggered PTSD has improved, after some self congratulation, I took out my iPod and began reading some enjoyable blogs. 

I did not google tiny breast cancer lesions. 

What I did do was read about some hipster urban homesteaders. I read about someone's mom crush. I posted some photos that I took on the way to the mammogram place to Facebook. I did not post to Facebook about waiting for the ultrasound room to free up because I wasn't looking for that kind of attention.

The ultrasound technician was really nice. I decided  to watch everything she was doing on the  big screen. She took pictures of the tiny areas after blowing them up to enormous proportions on the monitor.  I checked in with her to make sure that this did not represent the actual size. We shared a laugh over that. There is nothing I like better than an ultrasound technician with a sense of humor.

I also shared my medical opinion with her. Those look like cysts I said. I was basing this on the fact that they were very round and regular looking. There were no jagged edges. 

The technician concurred with my medical opinion. After some more explaining and reassuring about cysts, I got dressed and waited for Dr. Greenburg. The ultrasound experience reminded me of the time that I watched Dr. Oz get a colonoscopy on TV. Dr. Oz decided to forgo the anesthesia so he could watch and narrate the entire thing. He never stopped talking during the procedure.

The next thing I know, I'm looking at scans of my cysts with Dr. Greenburg. These are very common at your age, he said. I'm not worried about this at all, but I still want to follow you very closely. Because of my OCD I'm always extra careful he said smiling.

I couldn't tell if he was revealing that he has OCD or was joking and exaggerating like people do. Whether he has OCD or not doesn't matter. Let's just say that he's detail oriented. Even on a good day, he takes multiple views. If you are going to have OCD or be detail oriented, radiology is a good field for you. I also hear that the hours are good.

He gave me some paperwork to take home and wrote the words not cancer and underlined them.

I made my appointment for four months later and went to Shake Shack, where I ordered a delectable combination of food and drinks in giddy disregard for sugar and fat content.

After Shake Shack, I decided that this mammogram experience while not horrible was deserving of a little extra in terms of rewards. And that little extra was a trip to Sephora. I gave myself some pleasant browsing time. Then I settled on a tinted lip balm from Fresh. The color is called Rosè and it's become a favorite of mine. I also used my VIP points to get some samples. 

So now, I have a multi-tiered incentive plan for when I go to the mammogram place. Any procedure other than a basic mammogram calls for a trip to Sephora for one makeup item plus samples. That is in addition to the basic incentive package of reading whatever I want, and lunch at Shake Shack.

So because I needed ultrasounds the next two times I went to monitor the cysts, I now have a lovely new blue eye shadow and some anti aging skin care samples.

If anything truly ambiguous happens at the mammogram place, then there's going to have to be more compensation. Like I've said before, I'll cross that bridge when I come to it.

Rubric

There was a mom that I met at NYU Medical Center. Her daughter was older than Jacob, but had a similar tumor type. Her child's initial presentation was worse than his because not only did she have a tumor in her brain, but she also had metastasis in the cerebral spinal fluid. Also, the neurosurgeon was not able to remove the entire tumor.

I always knew when her daughter was in-patient at the same time as Jacob because I could hear her raucous laughter from down the hall. I could also hear her speaking loudly about Jesus. She had a really strong faith.

She knew that the doctors were working really hard to cure her daughter of cancer. Like me, she loved the medical team and of all the nurses at NYU. But Jesus was also doing a lot of the work. He was going to make sure everything turned out okay. Besides this, she had a natural glass-half-full personality.

Her optimism was contagious.

When kids are in the hospital for chemotherapy, there is a lot of down time. There is a great deal of waiting around. The mom and I would hang out together during these times.

Both of us were keen observers of other people. So one day during some down time, we worked out a little system together based on previous experience we'd both had at NYU.

At any given time, a doctor might give you some sort of news about your child. Some of the news was huge and life changing, some of it small and of little consequence in the scheme of things. Some of it was sort of in between.

You could tell what type of news you were about to receive by the way that the doctor behaved and how many people were involved.

If a doctor came to see you on their own,  the news was probably good. If it wasn't good, at least it was news that wasn't really bad. At the very worst it would be news you were accustomed to by now.

If two doctors came to deliver news you should be concerned. It was an unspoken rule among the doctors that if they had some sort of negative news to deliver they didn't want to do it alone. We could see them in our mind's eye negotiating with other doctors. I'm not going in there alone! If I'm going to tell her, you're coming with me!

If your doctor had many young looking doctors with them, interns or residents or whatever they were, you should not draw any negative conclusions at all. It was probably okay. They were doing rounds with their boss, the experienced doctor. Unfortunately, even when they were doing well, our children were interesting cases.

The only thing you should watch out for is if any of them to try a procedure out on your child. In our experience, these people were long on brains and short on technique. Sometimes they were short on both brains and technique. Even though this was a teaching hospital, you should insist on the nurse. The nurses knew what they were doing.

There was one scenario you did not want to see. That is a doctor accompanied by a social worker.

If your doctor came to see you with a social worker, then the news would likely be very bad. If that doctor thought you might need some sort of mental health intervention during or after the conversation, things weren't looking good. If the doctor thought he needed the social worker and not just another doctor, then you might even need some sort of outside support services that only a social worker knew how to arrange.

Excuse my language. You were fucked.

One day the mom sees me at NYU. Guess what? She says. I listen.

Dr. Sapp came to see me. He had the social worker with him.

Oh no. I say.

Listen to this, she says. My kid had her spinal tap a few days ago. They were checking to see how much cancer was in the cerebrospinal fluid after two rounds of chemo. At the meeting today, Dr. Sapp told me that the CSF was positive for cancer cells. They're going to have to add another drug to her protocol.

The mom continued. So then I figure he has more news, so I pointed to the social worker and said, What's she doing here? Then Dr. Sapp said I thought you might need some support after hearing this news.

The mom got really impatient at that point. Listen, she said. I already knew that the fluid was going to be positive. When you did the goddamned spinal tap, you said it looked like maple syrup. So I already knew there were cancer cells in there two days ago!

The social worker was unceremoniously dismissed. Apparently, they could take this extra support and shove it.

This post was adapted from a series of pieces I wrote in observance of Childhood Cancer Awareness Month last September.