Tuesday, June 19, 2012

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.


  1. Love this, and to add to it - if one hasn't walked a lonely road personally, perhaps one should not offer advice for those on such a road. After all, the road is a lonely one and one's "helpful" advice can sometimes make the traveller all the more lonely. We know people want to help (at least we hope they do). The best way to help is to be loving, be kind, be THERE on that road to help in whatever weird way is needed. If the traveller needs a lemon, bring a lemon, not a lime.
    And for the record, we ate only organic food, never used pesticides, avoided particle board in our home, made bread with organic grain that we ground ourself, never ate fast food....all to avoid our children getting something like a brain tumor. Then it happened - to us....but we did everything right - we never even got vaccines for our children. So, we went over the top with all natural remedies that were "guaranteed to cure cancer and the secret that the cancer doctors didn't want to get out because they are greedy, don't you know". We prayed, we had the elders anoint her with oil, we believed 100% we were about to see a miracle. Guess what, our daughter's tumor grew - and grew a ton. She was put on hospice. We prayed - cried out to God and He spoke to us in the clearest way we have heard and we did the chemo. It went against everything we believed to be true. For 3 months we combined the chemo with our natural remedies...and the tumor grew. So we went to Burger King, we stopped being so uptight about food and began to let our daughter enjoy life, enjoy food, enjoy a piece of candy.... and, we continued chemo. And, the tumor began to shrink. 7 years later, our daughter is here, thanks to the doctors we were once so afraid of and we are sane thanks to our amazing God and some amazing friends who some how, knew how to love us even without traveling this lonely road themselves.

  2. Celeste,
    Thank you. I wish some people I knew would know your story...you pretty much hit most of the REST of the points in that talk...well, except for how God spoke to you all in a different kind of direction.

    We are so blessed to know your sweet girl and all of your family.

    And someday maybe the people I wish would know your story will know it. Thank you for sharing it here. I so appreciate you.

  3. I can never know the journey you both are on - which never ends - but am uplifted by both you and your families. Don't judge till you have walked hundreds of miles in the other persons shoes. Who in their right mind would go into oncology just to make money - who would want to see the grief and heartache unless they were truely called and wanted to help as you say so well Kirsten. Love and prayers to you and everyone else travelling this awful bumpy road.

  4. I am so amazed by these gifted people, and so grateful I am not one of them...the joys must be awesome, but the stresses...