An Ode to Oncologists

I have been having blog overload..too many ideas that I want to spew forth, from ill-advised tattoos to sparkly rainbows…and still zero energy to say anything.


So today, as my second born naps off chemo on the living room couch, I figured I would begin with an Ode To Oncologists.

I figure most folks have a list of people they’d love to meet. I would love to share snarky commentary with Jon Stewart, or have lunch with Bernie Williams, or just behold the splendor of Aretha Franklin. Two years ago I got to meet one of my favorite singer/songwriters, Sara Groves,  and I instantly burst into hysterics as I tried to tell her what her songs had meant to me during some really difficult patches in my life. That was a Meeting FAIL.

I imagine I can pretty safely speak for EVERYONE IN THE UNIVERSE when I say that an oncologist is NOT on your list of “new friends to make”.

I recently heard a talk that briefly discussed oncologists, how if THEY get cancer only 9% will opt for chemotherapy because it truly is useless (I have no clue if this number is even remotely accurate, although based on some of the other gems in this talk I would guess it is Ye Olde Fanny Number, pulled from where the light don’t shine)…how they prescribe poison for people and are resistant to any other treatment options…how they don’t listen, blah blah blah. Basically, if you are sick with cancer, the gist of this portion of the talk was Run Away From Oncologists.

Granted, some doctors have the bedside manner of slugs. Some don’t listen, some are gloomy, some are arrogant.

One could perhaps note that these traits are not limited to oncologists…ahem.

But I can say with 100% certainty that the folks giving this particular talk have never actually met a real oncologist, or certainly never spent time observing one of these docs at work for any length of time.

Over the last 8 years we have spent an inordinate amount of time hanging out in a pediatric oncology clinic at one of the best hospitals in the country. Because of the nature of the community in which we’ve found ourselves, we know lots of other folks who spend inordinate amounts of time hanging out with OTHER pediatric oncologists in other great hospitals around the world .

In our experience, and the experiences of most of our friends, these docs are Mother Teresas with medical degrees and comfortable shoes.

Oncology is not an industry, and I take great offense hearing it referred to that way. It is a vocation.

The first day we met our neuro-oncologist (specifically an oncologist for brain and spinal tumors), less than 24 hours after finding out that our child had massive hydrocephalus and a huge brain tumor, when my husband and I were nearly incoherent with grief and fear and our 6 year old was hungry and crabby…our doctor spent the first 10 minutes of our first meeting chatting with G. She instantly put her at ease, laughed at G’s silliness, hugged her….


We knew within 30 seconds that we had found the right person to save our child.

Over the years we have had some really horrific times and some really happy times, and our doctor has never given up on our child. She laughs with us, tells it to us straight, gives us all the time and information we need. Whenever I’ve asked a difficult question, she answers it like a walking encyclopedia.


I love the power of walking encyclopedia-ness. I love knowing that mighty lady is my daughter’s super hero.

And you know, we are not like the lucky one in a million to get our Dr. B. (although I am so grateful, and do think we are lucky).  Most of our friends in this community have similar stories about doctors doing everything possible to save THEIR children. Adult friends with cancer have similar relationships with THEIR doctors.

This is a tough job. During one brutal season in our journey several years ago, I said to our doctor via e-mail that I was so sorry she had to give us such horrible news, even as we were crushed I felt so bad for her…I knew, through observation, that we were not her only patients to end up ashen-faced and silent in the waiting room that day…and that must be the worst part of her job. And she replied, “you put a finger on my woes”…

Taking care of critically ill children and adults is a vocation. Using inefficient treatments is frustrating for these doctors, we have seen that time and time again. Our doctor suffered with us when G’s last scan was such a train wreck. She WANTED it to work for us, which is a massive DUH, but really. It apparently needs to be said! While the clinical trial G did was a total bust for her, I don’t regret doing it. We needed to try and push research forward and hope that this would be the magic bullet for G’s tumors. We so appreciate that our doctor talked us through our options, shared her insights both about the meds and about our G, how she would tolerate more frequent hospital trips, etc.

She wants G to beat the tumors. She also wants her to be happy.

Yesterday, as we were leaving the exam area to march over to the day hospital for chemo, I stopped by the door where our doc was filling out our appointment forms. “So it’s ok, right, that she’s doing so well? “ (I get an illogical fear that if my daughter tolerates chemo well it’s not working…granted, the last chemo whomped her and then failed, so I know this is an illogical fear, but it’s hard to shake).

Our doc turned to me and smiled, “She’s wonderful. This time it will be different.”

After 8 years, I know Dr. B doesn’t just humor me. She knows I am neurotic and anxiety ridden, and she and I think alike on a lot of things related to my G, which I so appreciate. I am still a wreck about our next scan. I told Dr. B I would be full of sunshine and optimism and sparkly rainbows, (sarcasm is my language of choice for clinic), but I did feel better. It was her love for my kid that made me feel good. Her hope gave me hope, and that is the best medicine for any of this, really.

We’ll see what this combo brings. I hope it brings stability, oh, how I hope that. But either way, I know we have a mighty and loving doctor on our side who is not part of some pharmaceutical conspiracy or in this awful line of work for the money. She, and so many other neuro-oncologists and oncologists like her have a vocation to try and save lives.

So the next time someone makes some big statement about oncologists as bad guys, think about how this could truly hurt people just starting their fight against cancer or tumors or any kind of monster illness. This is a battle, and assembling a great team is key to hopefully beating the beast…

Lord knows, it is a battle…

But that will be another post.

The Wrong Story

This is ridiculous,
What am I doing here?
I’m in the wrong story!
--Stephen Sondheim, Into the Woods

 Life has been kind of Sondheimesque here recently, with plot twists and ironic turns and moments that probably contain some kind of bittersweet life lesson, hold most of the sweet.

Maybe it’s a midlife crisis, maybe it’s just a reality check long overdue, but I keep getting this weird, almost out of body sense of “How the heck did I get HERE? I’m in the wrong story!”.

I suppose I am supposed to go get Botox or some kind of tuck or lift or implant. If I was a guy (or, more accurately and less gender-stereotypically, less speed phobic) I would get a motorcycle. I have considered the ill advised tattoo. But mostly I’m just overwhelmed a lot of days with the sense of being in the wrong story.

 I know. This is a road that leads to madness. Hey, I did say it was a Sondheimesque season here. At least on the road to madness the way is clear…the light is good…ack, Must. Not. Burst. Into. Song. And the next line is a lie, I DO have fear. Even if this is nowhere NEAR the story I thought I’d be in, this is the one I got stuck in.

Still, in this last week my mother in law gave us a picture book she found somewhere…and it was written by someone in my old writing group, illustrated by another writing group member. Somehow, in 2010, these two wonderful, talented ladies managed to work together (not normally the way things work in children’s publishing), and they created this beautiful book. I was so tickled for them, so happy…

And in the same moment I felt a profound sense of a road lost to me in 2004. That for me has become the road not taken, not because I looked down some path and chose the other, just as fair, but more because our family got sucked into the vortex of the path that Nobody Wants to Follow.

That part of my brain, the children’s author part, went silent in 2004, I held on for another year, trying to write, but I couldn’t, I just had no voice anymore. The story of mine that was included in an anthology last year was written before G got sick. Publishing moves so slowly. And our family’s personal story had no time to wait around for publishing to catch up.

I see friends who still have lots of little kids, and I realize that yeah, that story is done for us too. Friends who have moved on to adventures in other places, with new friends who are happy and cheery and yay, friends who don’t bring an elephant into every room…new opportunities, etc….and we are still here, stuck in the morass of this story we never chose. The house I planned to have…yeah, that story changed, too—and some of that is ok, it’s not all bad, it’s just not the story we anticipated. I know some of this is the Pinterest phenomenon (where you look at gorgeous things and think, hey, I have NEVER knit a cauliflower chandelier out of recycled materials and veggies, I am a failure!) , but some of it is just the realization that the parade really is passing us by.

And really, don’t call the Waaaaambulance. It’s not like I feel sorry for us, I’m just kind of like WHAT THE HECK? mixed with a growing sense of mad. I’m not even sure what I’m mad AT. I’m not sure what to do with this whole idea, other than sing Sondheim over and over. Badly.

 I know that life is fraught with these sorts of moments, I do think God laughs (and not a polite laugh, a mighty guffaw) when we plan ANYTHING. But geez. If I got this book, our story, out of the library, I think it would be like the time I tried to read The Gulag Archipelago. Yikes. I got 300 pages in and said, “you know, there is no way this nonfiction book about Soviet prison camps is going to end well, these 300 pages have been BRUTAL.” And I stopped reading.

Obviously, stopping reading is not so much an option here. So here’s the next moment, figuring out how to make peace with the story where it is.

I know that technically the ending is unwritten, but I really, REALLY don’t like where this story is going. And maybe it’s a midlife thing, but I am kind of whomped with a deep sense of We Only Get One Shot at life.

So how do we work through the story we’re in? How do we make peace with this? How do we take this story, even if it’s ultimately more Gulag than Green Gables, and live it with gusto? People survived the Gulag, and that was WAY WORSE that what we are living. At least our smite is random, not inflicted by other people.

But how do we make peace with this moment, this reality, our shrinking social sphere, the fear that has taken up permanent residence in our guest room? How do we do this?

Or, to quote Sondheim again, how do we figure out, “Who can live in these woods?”

If anyone has insight on this, I’d love to know…humanity will thank you, I am a menace right now, an approach to the story that really isn’t super awesome for anyone…