year in review

Wow. So it's the end of 2009. The past decade has been chock-full of change. From starting it at the age of 19 to now, at 29, my life has turned out to be nothing like I had expected it to be or planned on it being. And maybe that's exactly how it's supposed to be. This decade has brought me a Bachelor's degree and 2 Master's degrees, living in Manhattan twice, a stint in South Florida, losing a grandparent and gaining a nephew and new baby cousin, and watching 2 people in my family meet cancer face to face.

This past year has brought the remission of my grandmother's cancer, the diagnosis of my aunt's cancer, the devastation of not getting into a doctoral public health program, figuring out who I am and what I want to do with my life and finally taking my writing seriously and earning money from it. This year has also brought the Stage IV breast cancer diagnosis of a friend of mine, numerous new friendships into my life, and the end of some unhealthy friendships. I have had to reconcile what I thought I wanted with what I *really* want in life, and am realizing that everything I planned might work out in the end, but not the way I thought it would. Am I always 100% happy and okay with this? No, it's a struggle. But I'm slowly becoming okay with the roundabout way my life has gone. I've learned a lot from every experience, and have met people on every step of my journey that have taught me and that enrich my life. These people in my life are constantly surprising me with their kindness and generosity.

What will happen in 2010? I guess we'll see.....

dancing in the rain

The day after Christmas....although I do not personally celebrate Christmas, half my family is Roman Catholic, so we usually go to my aunt's house for Christmas dinner and to exchange presents. Despite the fact that she was in the hospital this year, we still went to her house, where my cousin and his wife had been staying for the past week. We had homemade lasagna (which was excellent), vegetables, potatoes, etc. It didn't feel like the holiday, though, because my aunt's absence was palpable. I think there were a lot of feelings that were like an undercurrent to the day. We did go to the hospital after our gift exchange. Given the circumstances, my aunt looked good. She had been walking around, eating some solid food (although not as much as she needs to; even her doctor told her she especially needs protein after surgery and during chemo), and not in too much pain or discomfort. I have to admit, it was jarring. And being in the field, I hate that I was taken aback. But the last time I saw her, she had been wearing a wig and had eyebrows and eyelashes....and yesterday she wore a surgical cap and was bald, with no eyebrows and (to me) no visible eyelashes. It brought the whole emotional aspect of cancer home, real fast. But despite that, I think she looked okay. She got an IP (intraperitoneal) port during the surgery, and the plan is to start IP chemo 2 weeks after surgery. I worry about that; IP chemo is notoriously hard. According to the Manual of Clinical Oncology, the majority of ovarian cancer patients do not end up completing all 6 rounds of IP chemo because of the side effects and toxicities. It's harsh. For patients with Stage III ovarian cancer, it has been shown to extend survival, but for patients with Stage IV ovarian cancer, it is not clear whether there is significant benefit. I don't just want her to have extended survival - I want my aunt to have extended *quality, pain-free or low-pain* survival. Survival where she knows who her family is and isn't on massive amounts of medication for pain. Survival where she can travel or go places and do what she wants and not be homebound or bed-ridden. Survival where she can laugh with her grandson and my nephew. This is what everyone wants for their loved ones; quality time. And hopefully, once IP chemo is over, this will happen. That is my hope right now. Hope. Hope. Such an intangible thing that bears the burden of so many wishes and dreams.....

It's been good being up North. I do miss Carolina, and when I go back, I will start 2 classes....Intro to Medical Microbiology and its lab, and Intro to Human Anatomy & Physiology and its lab. I'm terrified and exhilarated. I am taking these classes, and if I do well, I will take one more over the summer - these are prerequisites for the accelerated BSN. Nothing is set in stone, though, and for all I know, I might fail spectacularly. We'll see. I also have an interview for a research assistanship on AYAs and cancer. *fingers crossed*. It sounds amazing, and exactly what I study and what my main focus is.....so hopefully it will work out!

2010 is a week away....this year, 2009, has brought surprises, disappointments, bad news, good news, the end of some friendships and the making of new ones, and taught me a lot about myself. Am I where I thought I'd be? Nope. Am I following the path I thought I would? Not right now, but we'll see in a few months. As one of my mom's holiday cards said, Life isn't about waiting for the storm to pass; it's about learning how to dance in the rain.

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.