What do you do?

How did we get to this place? What is there left to do when you see a doctor omitting information to the patient, and the patient isn't willing to hear what you have to say? What can you do when, just because you don't have an MD, your information isn't valued? What do you do when you are watching poor decisions being made - on both the physician's part and that of the patient - that will negatively impact someone's life and care? What do you say when you know quality of life and quantity of life might not measure up? What do you do when you see someone not living up to the Hippocratic Oath? Isn't it "First, do no harm?" I thought so, too.

In this case, there's nothing left to do.

All the consent forms have been signed, whether it's "informed" or not remains debatable; all the well-meaning friends have sat in on meetings, although they couldn't tell you IP from IV from subcutaneous; all the available lines of communication have been tried, to no avail.

It is a helpless, frustrating feeling, this place. All of my psychology training has left me with not knowing what to do or what to say, how to react next week....because it is different when it is not a patient/client. It is different when you have a personal, familial stake in things. When you watch someone offer themselves up for sacrifice in the hopes of gaining time, under the false impression that studies have shown benefit, because they've been misinformed by the provider they trust....and chosen not to hear the information you've provided.....it is hard. It hurts.

When I watch this unfold, it reminds me of why I feel (still) so strongly about being an oncologist. So things like this don't have to happen to another person and their family. Because in medicine, decisions don't just affect the patient. You don't just work with the patient in front of you; you work with their family, whether you ever meet them or not. And this....this.....this just blows my mind. On a professional, medical, and human level.

waiting rooms

Sometimes it's easy to forget about "civilians" who don't work in oncology, and what the cancer experience is like for them. This hit me today when I went to the new UNC Cancer Center to give a mentor of mine a recommendation letter form. She's a pediatric oncologist, and I went to the pediatric heme/onc clinic, and sat in the waiting room while she finished up with her patient. I saw parents and grandparents, both alone and with their children, and I realized, once again, that people who don't work in the field can experience this in a much different way. It's too easy for me to forget that, and I need to work on that. I saw the look of badly-disguised fear in one mother's eyes, and the half-hearted attempts at distracting themselves by family members. I forget that people are terrified of cancer, and not everyone turns toward learning information - many people turn away from learning about cancer, because they don't understand it, or it's just too frightening. For me, the more scared I am, the more I read about it, because learning and knowledge helps me to reign in my fear. But that's not for everyone. I choose to surround myself with information about cancer; most people do not, they are thrust into the world of lumbar punctures and chemotherapy and radiation and blood counts and talk of stages and remission and metastases unwillingly. And when I think about that, that must be terrifying. And I cannot allow myself to forget that. Not at all. Whether I eventually become a pediatric oncology nurse practitioner or a health psychologist, I cannot forget the human side of cancer, as Jimmie Holland (my own personal favorite oncology rock star) said. I can't forget the fear or the desperation or the raw hope that many people need just to face the day or another doctor's appointment.

I have chosen to immerse myself in a subject that most people try to avoid with every fiber in their body. I thought about this as I sat in the waiting room. And for a split second, I did think, Jaime, what on earth are you thinking? Look at these children, look at their parents. This field is full of sadness and tears and pain. But then in the next second, I knew that I wouldn't want to do anything else. I don't turn away from this. Yes, it scares me when I let it. Yes, it makes me sad when I let it. But I also know that one day, I will be able to make a difference, even if it's for one family a day. For me, that makes it all worth it.

Grief and Hope

Someone emailed me over the summer with the words Grief and hope are not mutually exclusive, Jaime...and I've tried to keep that in mind. She said it doesn't make sense if you approach it "logically"; it's something that you have to approach from the heart. Which can be hard for me, since I like things to have reasons and explanations and clear boundries and paths. What does the coexistence of grief and hope look like? I've been trying to figure that out. Does it look like the woman who knows there is a good chance this might be her last Thanksgiving, but still pushes ahead for treatments? Does it look like the girl who is holding out hope for a miracle, but with her oncology knowledge, knows that's not going to happen and it pains her to watch? Or does it look like the man who stands silently to the side, waiting for the right moment to lay it all out on the table for her knowledge? I think we all know what grief looks like; the crying oneself to sleep, or crying in the shower, the anger and fury that comes out as a response to a seemingly random diagnosis or outcome. We are all familiar with that dazed feeling of how did I get here? was it only yesterday the world was normal? But that was yesterday, and after today, nothing is ever the same.

I am going up North tomorrow for Thanksgiving, and my bags are full of hope and grief. This Thanksgiving, I am thankful for my family that I have right now, the fact that I have three grandparents, two parents, an aunt, 3 cousins, a brother and a nephew. I am thankful they are all alive here to celebrate with me this year. I am going to concentrate on living in the moment, because that's all we have right now - that's all anyone has, really. But Stage IV cancer has that nasty habit of bringing things to the surface, and this fact is no different.

I really, really hate Stage IV cancer.

cupcakes and life lessons

This is actually the inside of Bliss Bakery!

I went to a new cupcake place last week - Bliss - and now I think I'm obsessed. Their cupcakes are yummy, and their coffee is amazing...it's French press, and so good. The first time I went with the kids I babysit, I had a Red Velvet cupcake, which is daring for me, since I'm usually a vanilla cupcake with vanilla icing girl (which is the cupcake I got on saturday with Miriam). I'm lusting after this HUGE cupcake you can buy that feeds 12-15 people....it's $45, and I think it would be WONDERFUL for a birthday. Not that I know anyone with a birthday soon.....but Bliss's cupcakes are sweet without being saccharine (like Sugarland), and light. You don't feel heavy after eating them. Which makes them very, very dangerous. Of course, do I miss Crumbs and Buttercup Bake Shop, but short of getting on a plane for a cupcake run to Manhattan, Bliss will do quite nicely. 2 years ago, my then-roommate, Sonja, had gone to Manhattan for the week, and just happened to come back to NC on my birthday. She brought me back cupcakes from Magnolia Bakery for a birthday gift! I was so surprised...I mean, to carry them on the plane and everything? That was, by far, one of the best birthday surprises I have ever had.

I was reading blog entries from last year...G-d, I was so optimistic about doctoral programs. Things seemed to be falling into place. And somehow, I went from there to here. A place where nothing is certain, I'm not sure which way to go, and I don't have a set plan right now; no trajectory. This is not where I wanted to be, and I am trying to do everything I can to change this. It's a rough and rocky road right now, and I'm just trying to clear the path enough for me to squeeze by, if that makes sense. I know that I want to do research, work in oncology, and also work with patients - doing patient education and advocacy, counseling....somehow, a mix of all that. I'm looking at two possible avenues, but I'm not writing about them until January, because I don't want to jinx anything. Superstitious, yes. But I don't care.

reason #456 I love Chapel Hill

Tonight I witnessed something so small but so heartening. It was like "paying it forward", in person. Walking up to the store, a woman held the door for me, even though I was far away when she looked back. Then I held the door for another woman, who was far away, and she held the door for a man who was far away. It was something so so so small, but it was nice to see. That's what I love about Chapel Hill.

Reading: Outliers by Malcolm Gladwell

Listening: "Smooth Criminal" by Michael Jackson, "On Nature" by Matisyahu

november!

wow, I haven't written in a while. Things have been busy with babysitting, writing, trying to find a job....and I went up north to NJ last week, and just got back to Carolina today. It was a good visit, and my time with my nephew was great. He has such unbridled joy with life, and when he's not being cranky or mischievious, he's actually very fun. He says the funniest things - I needed to put him to bed, and he kept saying "stay up, stay up"....where he learned that, I don't know. He cracks me up.

I don't have much to write, unfortunately, because there are so many things in my head with what I want to do, jobs I am applying for, decisions to make about future plans.....and no one wants to read all that stuff. So I overanalyze and obsess and talk myself in and out of various options again and again and again.

I did see the Michael Jackson movie "This Is It" last night (wow, it seems so much longer ago), and it was really really good - I don't know what I was expecting, but it was better than anything I was thinking of. I don't think I stopped bouncing along to the music the entire time. And knowing the outcome makes it slightly odd to watch, but ultimately...it's a good movie.

onco-semitism?

I don't know how many of you have heard the latest thing buzzing about Komen? You can read about it here. They are helping to sponsor a bunch of breast cancer conferences/events in Egypt, for scientists in the Middle East, and the Egyptian Minister of Health has rescinded all the invites issued to Israeli doctors. The ADL put out a press release urging Komen to condemn the action, and so far, Komen has been silent. This is disgraceful. Where are all the Jewish groups speaking up? Where are all the feminist groups speaking up?

Komen, I am disappointed in you, more than I have been in the past...this is a new low.

not so rare.

I got an email from my supervisor, Jennifer, at MSKCC today. She is riding in MSKCC's Cycle for Survival, which is an indoor cycling event to raise money for rare cancers. More than half of all cancers are "rare", and it includes childhood cancers, uterine cancer, cervical cancer, sarcoma, appendix cancer, brain cancer, and others. These rare cancers do not get as much research money as the "common" cancers, and as such, there are generally fewer options for treatment. My supervisor is riding in memory of her mother, and I'd really like to see her surpass her fundraising goal. Click here to go to her fundraising page.

I had an amazing summer in 2008, and really felt like I was learning a ton and had a purpose in life. Every day, I would tell my parents, "Today was the best day ever..." Jennifer helped make my experience at Memorial one of the best experiences of my life, and I'd like to help her with this.

Go to the website, read more about rare cancers, and learn what you can do to help raise money for research and treatment.

We cannot all do great things, but we can do small things with great love. - Mother Teresa

hope.

Hope. What is hope? Is it the "thing with feathers/That perches in the soul", as Emily Dickinson wrote? Is it an empty campaign slogan used by a Presidential candidate? I like a quote from author Barbara Kingsolver, that goes "The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance, but live right in it, under its roof." But living inside that hope is very hard. I know the medical side of it. I know the clinical terms, am familiar with the statistics. And yes, we've all heard statistics are just numbers, blah blah blah....and to a certain extent, that's true. But there's also that cold hard truth of the matter. The black and white words written in the medical chart that detail the cancer. The doctor's sobering prognosis. Hope takes on a different meaning, you apply it to different things. I've blogged about this before; I struggle with hope. But sometimes, that's all you have.

what the heart sees.

I am reading a book, The Best American Medical Writing 2009. It's a collection of essays about, duh, medicine. All the essays are really great, but one in particular struck me today. It was a story about how this woman's 2 year old niece had retinoblastoma, a cancer of the eye -- and the grandfather was a well-respected opthamologist who suspected something months before, and blamed himself for not insisting she be seen earlier. It made me think of my nephew, and I swear to G-d, it physically hurt me to think of anything like that happening to him. I could not imagine life without him. G-d forbid. He is filled with such joy and love, and has brought happiness to everyone in our family, and I would not want to see him hurt for a second. I would rather hurt for years than have him hurt for a minute. But it made me think. And it made me look at pictures of him to make sure there was no white spot in his eyes. (A common sign of retinoblastoma). And I know I love my nephew - and at this point, I'm sure everyone else knows, too....but reading this essay truly brought it to my heart's attention. I would move mountains if Trey needed medical attention. But I hope I never have to.