One thing I'm loving right now....

So it's the end of September, National Ovarian Cancer Awareness Month. The bag company LeSportsac put out a print called Hope Rose, and the proceeds from it went to the Ovarian Cancer Research Fund.

These bags are made of this indestructible nylon, are easy to clean, and last forever. I have several over the years, and they're well worth the money -- and they're not even that expensive. I am loving the enamel teal ribbon keychain -- you can put it on any bag you happen to be wearing, or add it to your keys.

But with October starting tomorrow, and we all know what that means -- pink, pink, and more pink -- let's not forget about breast cancer's cousin cancer, ovarian cancer. It's deadly, silent, and we are lacking even a screening tool, let alone better, less toxic, more effective drugs to kill the disease. Let's raise money and awareness all year long, not just in September.

Lindsay (1987 - 2013)

I write this blog post not even really believing what I'm writing. My dear friend Lindsay passed away today. She had alveolar soft-part sarcoma, a very rare sarcoma that has an extremely poor prognosis. But Lindsay had such a positive attitude. She did chemo, radiation, spinal surgery, craniotomy, rehab, OT, PT -- she did what needed to be done, with a smile on her face and a belief that she would beat this. She did yoga, was into nutrition -- she did everything she could to be healthy.We either met through LiveStrong or the "crazysexycancer" nutrition message boards; I can't remember which, to be honest. For over 5 years we emailed, Facebooked, texted -- while I was in NC, she was in NY, and we vowed that if I were to move back to NYC, we'd have to get together for cupcakes. And after I moved here, she relocated to MD to be near Hopkins for her treatment. She was there so often anyway. She loved the OBX, and shared my enthusiasm for pinkberry, Sperry Top-Siders, plaid shirts, the Rolling Stones, and the South.
After her two strokes earlier this year, I knew that wasn't good, but this was Lindsay: if anyone could overcome this, it was her. Capturing the whole thing on Instagram as she went along. When I wanted DBS (deep brain stimulation) for the tremors, I had planned on going to Hopkins -- I told her this, and she was so excited that we'd finally get to meet - under less than ideal circumstances, but if anyone could put a positive spin on things, it was her. We were both sad when it turned out I probably wasn't going to go for consultations about the surgery.

And today, scrolling down my Facebook newsfeed, I see that one of our mutual friends left her a message about how she "will be missed." My breath caught in my throat and I said out loud, NONONONONO. I immediately went to Lindsay's page. It was true. She had passed away earlier today. I'm stunned. I feel like this must have been sudden, because she was doing so well. I just don't understand the Universe.
I can't even believe this is true. Sending prayers and good thoughts to her parents and two brothers.

life choices.

I don't usually follow this celebrity gossip, and try to refrain from being snarky or judgemental, but I've been reading stuff about Diem Brown, the former MTV Road Rules competitor. And you know, it's stirring up some really strong, conflicting opinions. At the age of 22, she was diagnosed with ovarian cancer, and they removed one ovary and several lymph nodes - if I'm not mistaken, I think it was Stage II. In June, she faced a recurrence of the disease. When she went public, she made a comment on Twitter, saying  she "didn't realize ovarian cancer could come back." Does anyone else find this odd? Didn't her oncologist tell her there could be a chance of recurrence? I mean, that's what follow-up visits are for.
So she is 30 right now, and unmarried, and has already frozen eggs. She is curently postponing surgery and chemotherapy to undergo one more round of fertility medicine and egg harvesting. She feels very strongly about having a biological child, and is willing to take the chance at the risk of delaying treatment.
Okay. I certainly, most definitely understand the desire, the inborn instinct to want biological children. It is so powerful. I'm 31, and it is always on my mind, that my time is running out. But, I also wonder if she'd be so adamant about having a biological child if adoption were seen differently in society. So often, people say they want "their own" children. Adoption or biological, it's *still* "your child." Adoption is too often seen as a back-up, or second best. I don't know. Ovarian cancer is a killer. Is it worth delaying treatment for the chance of having a biological child? Of course, only the individual can make that decision. It's an individual choice. We fought for the right to choose, after all.

But I cannot help but think, what the fuck are you doing? I don't know. If I were diagnosed with a reproductive tract cancer, I would do everything I could to survive, or give myself the best chance or survival. If it meant not having biological children, I'd be fine with adoption. I can't take care of a child, biological or not, if I'm super sick or dead.

I have a friend who had lymphoma in her early twenties, putting her into early menopause. After she got married, they hired a surrogate with a donor egg, but she miscarried. So what did J do? Using her husband's sperm and a donor egg, they implanted a fertilized egg into J's uterus. And she gave birth. Is the child any "less hers" because it's not J's egg? Of course not.

There are many, many ways to become a mother. Is having a biological child worth your health or survival?
That's for you to answer.

how we die.

It's a new year, with new beginnings. With beginnings come endings, though. My aunt passed away in the early morning hours of New Years Day. We had gotten a phone call around 8am on December 31, saying that her breathing was very slow and erratic. We all drove to her house, and she had a glassy stare and kept reaching up to the ceiling and shading her eyes. All the physical signs were there of impending death: glassy stare that looks "past" you; jerky muscle spasms due to loss of muscle control; mouth hanging open and eyes half-open. She was given medication to subdue the bodily twitching. It was something, though, to watch her reach toward something we could not see. I'd like to think that she was reaching toward Heaven and shading her eyes against the light. It's hard to fully believe, though. Faith and science are hard to reconcile.

As the hours went on, she became comatose, not responding to touch or sound, although they say hearing is the last thing to go. Her breathing was fast, then slow, then fast. She'd gotten so thin you could see her heart leaping with all its effort under her pajama top.

I know this death, by all accounts, was a "good" death. She was on hospice, pain-free and was in her own house, in her own bed. But honestly, it made me think, seeing her day after day, slowly ebbing away. We talk about "good" deaths, we want to die with "dignity." But I'm not sure if it's bullshit. The cancer grew unchecked and the bowel obstruction became complete. When she sat up, she vomited because of the pressure on her esophagus and when she lay down she couldn't breathe because of the tumors pressing on her lungs. She'd lost so much weight that she could see and feel the tumors poking against the skin of her abdomen. Her bodily fluids were coming out in bags and tubes and she barely had energy to talk. And this is a good death.

I don't know what a "good" death would look like, and I know that many diseases destroy any hope of a "good" dying process. I believe in G-d, and I consider my faith to be fairly strong. But this whole process has made me think and question. There are so many things I don't understand and probably never will.

My aunt's mother, my grandmother, has Alzheimer's that has rapidly progressed. I mean to the point where today at the memorial, she asked where Edie (my aunt) was. She has to be retold that her daughter died, and it's like the first time, every time. She doesn't remember basic things and perseverates on everything. She is not even herself any more. It must be scary, not knowing your own life after a while. This is its own kind of death, I think. A living death, almost. Where you can die and yet remain very much physically alive. I'm not sure which is worse sometimes; watching someone die of cancer or watching someone die from Alzheimer's.

fixing what is broken.

To anyone who's read this blog for oh, more than a few posts, it's obvious I still have a strong interest in medicine/oncology. And believe me, if I were good at science, I'd be in med school or nursing school in a heartbeat (ahem, see spring 2010). But that is not the case. I still read Atul Gawande, Jerome Groopman, Perri Klass and Danielle Ofri, and whenever I go into a bookstore I usually go to the medical section first, to see if any doctor, nurse or student has written a new book I might like. If I'm completely honest, a tiny minuscule piece of me still would love to be a pediatric oncologist. So it's safe to say I have strong feelings about medicine and the kind of doctor I like, and would want to be.

My nephew and I were in the car today; I was driving us to meet my dad so we could go to my aunt's house to visit her. I had asked my nephew if he knew my aunt was sick and going to Heaven soon. I reassured him that he would not go to Heaven for a verrrrrrrry long time, and neither would his daddy, Aunt JJ or anyone else, and that my aunt was sick with something called cancer, that the doctors cannot always fix. There was a pause, and then this little voice from the back of my Jeep says, "But JJ, I thought doctors fix people and make them better. They can't make Aunt Edie better?" I explained that they want to make people with cancer better, but sometimes it is very hard. But geez, kids have a way of saying the most starkly important things in such a matter-of-fact, innocent way.....because isn't that what we all, at our most basic level, wonder when someone we love is ill? You're a doctor; doctors are supposed to make us better. And kids say it out loud, with no anger, embarassment or anything. There's something refreshing about that, and I think it's why I loved working in pediatrics.

I can understand the feeling, too. When my friends Erik and Sophia were sick in middle school from leukemia and a brain tumor, respectively, even at the age of 12 or 13, walking around CHOP, I realized that something wasn't right - why isn't everyone going home, I thought doctors could make kids better. When friends or family members get sick, we all have that first irrational thought of, why can't they FIX THIS NOW. And if they die, we think this wasn't supposed to happen. We rail against G-d, doctors, each other, ourselves.....because sometimes things break. Sometimes things fail. And even four years of college, four years of med school and subsequent years of internship, residency and fellowships cannot fix everything that is broken, no matter how much we wish it would.

lifecycles.

All that stands between me and winter break are two books, a paper, and workshop critiques. And 3 classes. I need this break. I need to read for pleasure, need to read brain candy YA books or sports books or US Weekly. I don't want to see a New Yorker or a Believer once over break. I'll make an exception for lit journals like Ecotone and Ploughshares. My brain is just wiped out. This week in particular has kind of kicked my ass. I just went through a whole bunch of bureaucratic/administrative red tape that did not end in my favor. So I can't do my Independent Study, which is like, the ONE thing I was really excited about for next semester. I never really got a firm reason why, but I think it's internal stuff. It was a whole week of stressful emails and conversations that never really met on the same common ground, ending in disappointment and, I admit, a very small feeling of defeat. But I hate feeling defeated, and after an afternoon of moping, got my scrappy self together and I know that somehow, I will pursue my interests in a really in-depth way. And when I am a famous writer, on panels with Atul Gawande and Jerome Groopman, I will say, "Let me tell you about this one time I wasn't allowed to do this Independent Study...."

A girl can dream, can't she?

Then I found out I didn't get the research fellowship for which I interviewed. I was really crushed, and honestly - without sounding like a total asshole - I do have more research experience than almost everyone in the program. I've done research at the Hospital of the University of Pennsylvania, Memorial Sloan-Kettering, the UNC Schools of Public Health and Nursing, and the Cancer Institute of NJ. I don't think that's too shabby. But, I guess it wasn't what they were looking for. Which is a shame, because I genuinely enjoy research. Which may explain why I am blogging on a Friday night.

But honestly, all of that is small in the grand scheme of things. My aunt is on hospice and if she lives through the year, I will be pleasantly surprised. She looked almost ghoulish at Thanksgiving, with her skin stretched across her face and greyish skin; not the aunt I know. Cancer is relentless, it is fucking relentless - especially ovarian cancer. I never really found cancer "scary" before, like the "civilians" who don't do cancer research (that's how I thought of it). But since I've stopped reading oncology textbooks in my spare time, I better understand those feelings. Like I mentioned in a previous post, I've been thinking a lot about death, terminal illness, and what we think of as a "good" death, and dying with dignity. I've also been thinking a lot about grief. I have been a lucky girl. Although I have had my hardships and lost people I've loved, my life has been relatively spared from serious grief. I am lucky enough to still have 3 grandparents who are feisty and alive (although one is slipping into Alzheimer's - the other two have more active social lives than me), I have two parents who are well, a brother and nephew, and a cousin/his wife/their baby. I haven't wanted for much, and for the most part, haven't really struggled in school. I know I am lucky, and I am very thankful for this. But death and dying bring grief to everyone. And I guess maybe I am highly attuned to it now because I'm writing/reading constantly and have opened myself up more. But grief has a particular quality to it. It's sort of like a shadow or a mist that lays itself on you and is absorbed, and then expands until there is no room for anything else. It is constantly tumbling, like an ocean before a storm - sometimes it is fiercely violent, other times there's just rolling waves. But always there. I felt something similar to grief but not exactly, when Lambee had breast cancer. I would sit on the bus back to my neighborhood after classes and look out the window and think, there is so much sadness in the world. Because everything became tinged with fear and a sort of grief those first few weeks.

And of course, me being me, I've turned to books. I'd probably have a binder full of research on hospice/grief if I weren't drowning in schoolwork, just like I had bags full of research/peer-reviewed journal articles when Lambee had cancer. So I've mostly been reading fiction and some nonfiction. The Book of Dahlia. She's actually a graduate of Columbia's MFA program. Blue Nights. It's Joan Didion; no explanation needed. The Cure for Grief. This was written by one of my professors (also a graduate of the program). I've read it several times before, but each time there's a different nuance; I find different things. It's funny though; not many people want to ever talk about death/dying/grief, even in the abstract. You ask people for book recommendations and they stare blankly at you, or offer up religious texts. (Which, hey, I'm not knocking "When Bad Things Happen to Good People" or "Blue Like Jazz" - I've read both. I just don't want that right now).

I'm just rambling now. Not enough sleep, too much caffeine.

Listening: The Like, "Are You Thinking What I'm Thinking?"

Reading: too much stuff.

Snacking: Twizzlers, Haribo gummy bears

30 Before 40.

So it's settled. I will be attending Columbia for their nonfiction MFA in the fall. *deep breaths*. I just mailed my deposit, and unlike when I lived in nyc before and mailed my PCOM deposit, I am not going to run back to the post office and ask them to fish the letter out of the mail bin so I could have it back. My choice was pretty much made for me, since UNC rejected me, thankyouverymuch, which I still don't understand. And wouldn't you know, I come home to an email about an oncology freelance writing job here in NC. sigh. I just have to have faith that it will work out. Somehow, in the end, it will work out.

I'm a big listmaker. Since turning 30 in December, I've been feeling a little bit like time is slipping by, unnoticed until another year has passed. I'm not upset about turning 30 - I think this will be the best decade yet - but there are things I want to do before I am 40. So here's my list, of 30 things I want to do before I turn 40.

1. Get a book deal and get published.

2. Go back to Israel.

3. Visit Italy.

4. Finish a half-Ironman by the time I am 35, and a full Ironman before I am 40.

5. Run a marathon.

6. Get married.

7. Become a mother.

8. Visit Prague and Croatia.

9. Pay off a good portion of my student loans (although, with Columbia.....not sure how likely that will be).

10. Run the NYC marathon.

11. Start a psychosocial oncology writing therapy program at a major cancer center (besides Sloan-Kettering, who already has one and that I'll be volunteering with come fall).

12. Get my ACSM personal trainer certification, finally.

13. Read Ulysses by James Joyce.

14. Read a good portion of the "classics".

15. Learn Italian.

16. Start practicing yoga routinely. For real.

17. Visit California and my friends Jessi and Carrie.

18. Be the best aunt ever to my nephew Trey. :)

19. Maybe race the Kona Ironman (if I get in by lottery).

20. Meet Molly Barker, the founder of Girls on the Run. We've emailed and we're Facebook friends, but I have yet to meet her.

21. Get something published in The New Yorker.

22. Own a Balenciaga motorcycle bag.

23. Try skiing.

24. Come back to Chapel Hill to live.

25. Visit Niketown - THE Niketown, in Oregon.

26. Resting when I need rest and listen to my body, to avoid future injuries.

27. See Tori Amos in concert.

28. If the Stones go on tour one more time, see them in concert.

29. See Madonna in concert.

30. Be healthy enough to do even more than I thought possible in my 40s.

dirty thirty.

In three days I will turn 30, and you know, I'm not upset about it. After all, as someone said to me yesterday, what's the alternative? No, but in all seriousness, at the beginning of 2010, I was dreading turning 30 - my own "thrisis", if you will (the new buzzword for the crisis over turning 30) - but now, I welcome it. I think...no, I know, that this decade will be a really good one. In many ways, it feels like my life is only just beginning; that child-like sense of possibility has been renewed and I am excited for what lies ahead.

The past ten years have brought a lot to my life. A college degree, two graduate degrees, a wonderful and sweet little nephew, moving to the South (and liking it, no less), and a new baby cousin. Over the past decade, I have lived in PA, FL, NY and NC. I have seen numerous people - too many people - in my life face cancer, and was reunited with my childhood goal of working in oncology. I have had three foot surgeries on my left foot and learned the lessons of patience and tenacity. I got to work at my dream job for one summer, meeting world-famous cancer researchers whom I had only previously read about. I played college rugby and found triathlon, a sport that has given me back my health and my sense of self as an athlete. The past ten years have been hard and full of struggle and disappointments, but also full of human kindness, relationships, and the work of perseverance. When I first moved to New York in 2003, someone sent me an email with this quote by Freud - "One day, in retrospect, the years of struggle will strike you as the most beautiful." While I appreciated the quote even back then, it is only now that I fully appreciate its truth.

I have been thinking a lot about what I want to bring with me into my thirties and what I want to leave behind. I hope my thirties are about living life with no regrets, being in the moment and pursuing my heart. Hopefully I will meet my future husband and start a family of my own. And in my heart, I know that no matter what, in the next ten years, I will become a mother, whether it be with biological children or through adoption. My thirties will be about abundance, not restriction. I want to make choices based on love and hope, rather than fear or anxiety. And maybe this all seems naive and foolish, but maybe it's good to set the bar high. I look back at who and where I was at the age of 20, and really like the person I have become since then.

In Judaism, there is a blessing called the Shehechiyanu. It is typically recited on the first day of a holiday or when doing something new. This blessing thanks G-d for keeping us alive and bringing us to this moment. You can bet that on Saturday, my 30th birthday, I will be reciting the Shehechiyanu with my heart wide open.

they don't call MFA programs MaFiA programs for nothing....

So.....I assume for those of you who read this regularly, most people know that I have been concentrating on writing, more specifically, health and medical writing. I write regularly for livestrong.com and just had the opportunity to write some articles on breast cancer for the website sheknows.com. I really love it, and I get to use my education and talent (see, family - it's not for nothing!). But, like all talents, my writing needs practice and nurturing. Some people say writing "can't be taught". I have mixed feelings about that. Do I think some people have an innate talent and ease with writing? Yes.....but someone also once said that a writer is someone for whom writing is more difficult than it is for everyone else, which is also true to an extent, because writers are always so critical of their writing - there is always a more perfect word, or more beautiful way to say things. Nonetheless, talents can be refined and nurtured and benefit from instruction. After all, people take dance lessons and music lessons. THAT can be taught....so why can't writing?

So I have decided to apply to various programs in order to enable me to pursue more careers in this field. You'd be surprised how many jobs want a PhD, or more education in writing. I am looking at journalism, medical-science writing, and MFA programs. I'm nervous about the MFA programs, because so many of the students I read about on MFA-application blogs are super-literary, super well-read and incredibly creative. I don't think I'm that creative - I mean, I've spent the past how many years trying to tamper that down and focus on the practical, science side. And though I'm fairly well-read and always reading, I feel like I'm not reading the "right" books. I'm not reading the "literary" books. I have no idea who many of these authors are that many applicants are mentioning. It's intimidating. Super intimidating. Every program wants its applicants to write about the books they are currently reading.....and I want to sound smart, so I doubt that "the latest issue of Vogue" and "True Prep" are the kind of books they want to hear about.

But when I read about the classes and writing workshops and literary seminars students have to take, I am so jealous that students HAVE to take these classes, because I would love to have to go to them! I would love to have my days filled with reading and writing and rewriting and such. I don't know if any of this will work out. I am cautiously hopeful. I still love science and oncology, obviously, but this finally lets me use my talent to be involved in that field. I still get a thrill when I think to myself, I'm a writer. (Sort of). It's scary, though. Reading and writing have always come fairly easy to me. I tear through books like there's no tomorrow. I'm constantly reading one or more books at any given time. But I'm applying with hundreds of other students who will put my reading lists to shame. Who majored in English or Comparative Literature or Poetry. Who read literary works instead of what's on the "new in paperback" table of Barnes & Noble. Don't get me wrong; I've read ZZ Packer and Zadie Smith and Joan Didion. But I also love me some brainless reading.

What is my end goal? I'd love to write for a science, health or cancer magazine, or a hospital or health center or website. I'd love to do research and disseminate the findings to the public via journalism. It's not so different from public health and health education, when you think about it. I know it's been a circuitous journey. I'm slowly finding my way and finding my strengths. I just hope I'm not wrong about this path.

Previvors

Do you know what a previvor is? It is someone who does not have cancer, but who is at higher risk of cancer because of a strong family history or because of a genetic mutation. Dina Roth Port has writen a book about five women who are previvors and have a patchwork of breast and/or ovarian cancer running through their families. When I found out about this book, I was lucky enough to have a copy sent to me, and wanted to review it on my blog.

In this book, each woman tells her story of how the different cancers affected their decisions to get tested and their subsequent decisions. More importantly, the book describes options previvors have, what each option entails, and what an individual can expect, with surgical decisions, genetic testing, disease surveillance, breast reconstruction, body image and sexuality issues post-cancer, fertility, and how to tell your children. The book is a comprehensive how-to guide with personal journeys woven into the narrative, which makes it feel like you are talking with girlfriends about their personal decisions and concerns.

Personally, as someone with now breast and ovarian cancer in my family, but no known mutation, I found this book incredibly helpful. When the time comes, if need be, I will think about my options and what each path would mean for me. Right now, at the age of almost-30, this book helped dissipate some of the fear that I have of getting breast or ovarian cancer, and provided an informative, personal and empowering book to read and learn from.

Go to the book's website to learn more about the author and the previvors, and to learn how to order your copy.

think before you pink, PLEASE.

It's October. Breast Cancer Awareness Month....in case you missed it, despite the commercials, pink ribbons adorning everything from potato chips to wine (ironic, since even one drink a day raises your risk of breast cancer), and the senseless Facebook status updates. I am all for raising awareness. But we are aware of breast cancer. Ask women what the symptoms of ovarian cancer are, and a lot less women will know that. Or colon cancer. Or thyroid. Or pancreatic. Or, hell, the number one killer of women - heart disease. A lot less women will know all of those symptoms.

We still don't have screening tools for many cancers. Our treatments are extremely toxic, no matter what cancer we're talking about. A lot of misinformation is still out there.

And don't even get me started on those "I heart boobies" bracelets and "Save the ta-tas". It's similar to the infantilizing Barbara Ehrenreich talks about in her "Welcome to Cancerland" essay, with the stuffed animals with pink ribbons on them. The "boobies" and "ta-tas" breast cancer stuff objectifies women's bodies, and once again, places our bodies as something for others to look at. What, did these kids who wear them not care about breast cancer before, but because it says "boobies", it's cool? Women are more than breasts; the focus should be on women's health, and not "saving the ta-tas". It sexualizes an issue, and in the end, has a degrading tone (in my opinion).

Breast Cancer Action put together the Think Before You Pink campaign, and it's worth a look. Find out how much money is actually being given to the cause, and to what organizations and programs. Komen may be the bully of breast cancer, but many other organizations are out there - Bright Pink, FORCE, and others. Find out just how much these organizations are doing for breast cancer, and for which population - does most money go to younger women, or older? High risk women or metastatic?

Don't get me wrong - pink is one of my favorite colors, and I am guilty of having pink ribboned things. But if you want to make a difference, donate to the organization directly. Do BSE. Make sure you and other women in your life get clinical breast exams and mammograms, if necessary. Let's talk about triple-negative breast cancer and inflammatory breast cancer; cancers that don't respond to hormones or have lumps. Talk openly about reconstruction and even the choice NOT to have breast reconstruction. Let's destigmatize prophylactic mastectomies and refuse to live in fear. All of this will do much more for breast cancer than buying a bag of chips with a pink ribbon on it.

Planet Cancer.

My friend Heidi Adams, the founder of the organization Planet Cancer, sent me a copy of her new book, titled, appropriately enough, "Planet Cancer:The frequently bizarre yet always informative experiences and thoughts of your fellow natives." It is basically a book tailored to AYAs (those 15 to 39) diagnosed with cancer and those who love them. But really, cancer survivors and family members and friends of all ages will find this book entertaining and informative. There are stories from "real" people as to what it's like to participate in a clinical trial, what it's like to experience "roid rage", and what it's like to have your leg amputated. Sprinkled throughout the book are the Planet Cancer infamous "Top 10" lists that will make anyone crack up laughing. But all jokes aside, the book provides easy to understand, clear information about treatment, diagnosis, various tests, side effects, returning to the "real world", cancer in the workplace, relationships and cancer, and so much more. The book is informative and urges patients to be proactive without being preachy, and though it obviously deals with heavy stuff, nothing is sugar-coated or overly dramaticized. It reads like a conversation with a sarcastically funny, well-informed cancer advocate who doesn't shy away from some jokes that may seem inappropriate to some people. The book "goes there", and that's great. Having read many, if not most, of the books out there on cancer for "laypeople", this book ranks up there with the best of them (and I'm not just saying that because I know Heidi). AYAs especially are often forgotten about, and this book helps them feel like there are other people out there who can understand. There is also a large resource section at the end with books and websites and organizations where readers can find more information about everything mentioned in the book.

One of the Top Ten lists, contributed by other people I am lucky enough to "know" through the internet, JT and his boyfriend Michael, is this one:

Top 10 Attractions at the "Michael Diaz Dream Cancer Center for Young Adults"

10. Radiation laser tag.

9. No candy stripers - just strippers named Candy.

8. Try your luck at a basketball shooting game, only the rim is about a foot away. Face it: none of us has the strength to shoot a normal distance.

7. Win cool prizes, like, like....insurance coverage for another year! Keep the fucking stuffed animal.

6. Those mist things spray the med of your choice. (Imagine that. Now imagine that spraying Dilaudid. Hellz yeah).

5. All nurses' stations double as full-service bars. Push your nurse call button and order whatever the hell you want.

4. Vincristine or [insert name of your chemo here] is called "motherfucker": "Hey, I don't want any more of that motherfucker."

3. When you're prepping for surgery, you don't use any anesthesia. You just have sex until you pass out.

2. Everything is a game. You know, if you need to vomit, we bring in people you hate so you can vomit on them. Or we can line up the vomiters and see whose vomit is most toxic.

1. And how about the section where they give out nice, sensual massages to anyone who wants one? And you get a happy ending!

umm....fact check.

So, I was reading people.com and stumbled across Elizabeth Edwards' interview. Apparently her cancer has metastasized more, with tumors in her legs, spine and skull. Breast cancer most often metastasizes to the bones, brain, lungs or liver. But what got me was what she said...."It's less frightening than you think; it can't migrate to your brain." I am hoping she meant literally move from the skull to the brain, because breast cancer can certainly metastasize to your brain. I have had the good fortune to meet this woman, and she is really lovely. She is an amazing woman, and I am sad to hear that she has more bone mets. I actually think she gets treatment here at UNC.

treated to death.

I have talked ad nauseum about hospice, end-of-life care and death with my friend Carolyn, and today I came across an article that was so wonderful. And it talked about many of the things she and I have discussed. Namely, Americans are being treated for incurable cancers til right before they die, rather than having those hard conversations with their doctors and urged to pursue hospice or palliative care. And many of those patients suffer and experience pain, and do not get to live their days out like they would have liked. They cited that 12 percent of patients who died from cancer in 1999 received chemo in the 2 weeks before they died. The article mentioned that Americans use sports and war metaphors in dealing with disease and cancer, instead of talking about death and how it is a natural part of life.

I have seen this myself. I saw how my grandfather was treated, time and time again for his mesothelioma and lung cancer, though we knew it wasn't making much of a difference. He got his chemo treatments, his Procrit, lost a ton of weight, lost his bowels and bladder in public, and in the process, lost his dignity and enjoyment of life. I was living in Florida at the time, and had a feeling he wasn't going to live til Thanksgiving, when I was slated to come up to NJ next, so I flew up Halloween weekend, after not seeing him since July. He was a shell of who he had been. He was just put on hospice, after years of treatment. He could barely eat, could barely drink, could barely breathe. He had moments of lucidity and moments of....well, it wasn't delirium, but it definitely was some sort of supernatural end-of-life thing. We talked about how he was "watching the wind" because he "couldn't go" until it was a certain way. Make of that what you will. It wasn't until he was on hospice that he finally got permission to relax and let go. I left that Sunday to fly back to FL; he died the following Saturday. He was on hospice for little more than a week. This isn't too far from the national average for hospice stays.

He missed so much because he was sick. He was too sick to go to my college graduation. He was in and out of care facilities. The day before I moved to FL, we had to take him to the hospital because his lungs were filling up with fluid. In my heart, I know it could have gone down a totally different way.

So when do doctors, nurses and nurse practitioners talk to their patients? How do we get the point across that palliative and hospice care isn't "giving up"? How do we convey that it's a way for the person to enjoy their life and the time they have left, rather than missing out on family gatherings, Christmas dinners and seeing their grandchildren? How do we admit that the treatment they are on might not be working, or may be of minimal value when compared to the painful side effects? There is no easy way. I know this as someone who has provided counseling to cancer patients, some of whom really needed help talking to their family about death. I know this as a health researcher, a patient advocate and a family member. It is not an easy set of conversations to have, and each person has to make a personal choice that is right for them at that time.

People may see it as "giving up hope", but I don't think it is. I think it is merely a shift in what we are hoping for. Let's hope for days free of crippling fatigue and vomiting. Let's hope for being healthy enough for holidays, or trips to places you've always wanted to go. Let's hope for quality time with loved ones and friends, days where honesty is spoken and we say everything we need to. We can hope for living life, not just prolonging survival.

remembering.

I was walking to my car after meeting with my Microbiology professor about a test that I bombed, and I saw a bumper sticker that said Remember who you wanted to be. That struck me, because my teacher and I were just talking about the difficulties I was having taking tests, which she feels stems from my lack of confidence in my abilities regarding the material. And she's right -- I have been so intimidated by these classes. I'm in a new environment, the hard sciences, as opposed to the behavioral sciences, and it scared me. She said I need to believe in my abilities and believe I can do it, that I can be a "gunner" like the others. She's right, I know she is. My family has said this to me many times. I think the issue of self-confidence has been a nagging one especially since last spring, when I did not get into the UNC Health Behavior/Health Education PhD. I mean, that devastated me and totally pulled the rug out from under me. I think it was then that I really began to start to doubt my intelligence, my abilities, and my success. Seeing this bumper sticker made me think, who did I want to be? Not someone who doubts herself, I can tell you that. I have not earned 2 graduate degrees with self-doubt.

This also tied into something that's been nagging me, and I know I've blogged about this before. I love oncology. But geez, could I have picked a more emotionally challenging field? Sometimes it is hard, because cancer is everywhere in my life, personally and professionally. I have a friend whose metastatic rhabdomyosarcoma has not slowed down despite amputations, chemo and radiation; he's going to try a new chemo regimen, but the doctors have had "the talk" with him and his wife. He is 32. I have another friend who has leukemia; he just had another recurrence, despite chemo and a bone marrow transplant. His boyfriend is battling Hodgkin's disease. He was supposed to start a PhD at Stanford in the fall; now he is making videos and writing letters for his younger brother to remember him by. He's 25. I have a family member with end-stage cancer. But then I remember all of my friends who have overcome their cancers, and who are living and thriving.....but it's hard. In some ways, I wish I could be less emotional about it -- but at the same time, I think it's my emotion that illustrates just how passionate I am about the field, and patients can sense that. Patients can sense when a provider is "just doing a job", as opposed to loving what they do. I want to love what I do. I want them to feel my passion for making a difference.

I worked in an ob/gyn office for 6 years and loved it. Sometimes, when oncology gets to be too hard, I wonder if I'd be better suited to being a nurse midwife. Delivering babies. Pink and blue and happiness. Or a women's health NP. But then I remember my reasons for going into oncology, and go back again.

When I remember who I wanted to be, I remember I wanted to be a passionate, determined, never-give-up health educator and oncology person. I wanted to forge connections with patients and make a difference. I wanted to be optimistic and believe in the best outcomes, and believe in miracles. And this is all still possible. I just have to remind myself of that. I just have to believe.

the little things.

Much of the time, I am humbled by the work I do, or plan to do one day. Often times I think that just because I'm not "doing" what I want to do 40 hours a week, or I'm not an oncologist or oncology nurse or PhD researcher, I'm not "really" working in oncology....and there are days that prove me wrong. Like today. I gave the LAF survivorship handbook, the NASW Cancer Survival Toolbox cd kit, and LiveStrong wristbands to someone whose husband was just diagnosed with a rare cancer and is having surgery this week. Because she herself is in the helping professions, I debated about giving these to her; I thought she'd have enough "toolkits", etc. But I was wrong - in fact, she seemed quite happy about it and said they were using a manila envelope for all the medical papers/files and the handbook would be useful. And it hit me, once again, how important this work is; to give people tools to navigate through the cancer world; because the majority of people don't have a compass when thrown into that place. Even people whom you might think don't need help, might need help or something "extra". In the end, I'm glad I gave her the tools; even if they look it over and decide not to use them. If it's one less thing for her or her husband to have to worry about, I feel like I've done my job.

This is probably all coming out wrong, and I can't really express what I'm trying to say...but I hope the sentiment comes through. Never underestimate the little things, I guess.

for KM.

I don't know what it is like to have a husband have cancer. But when you told me your husband was diagnosed with a rare cancer, I saw the pain and fear and questions in your eyes, the determination to be positive and hope for the best; I know these feelings well. It all made sense to me now - the sound in your voice a few weeks ago when you said that there was an emergency, that I couldn't place but knew it sounded so familiar....it was stunned shock. (Is there even any other kind?). I know what it's like to mobilize forces and energy to get everything in place, line up appointments, call the appropriate people, get the second opinions and wait for results. I know the relief at hearing it can be easily taken care of, that it's early stage; and yet I also know the anguish at hearing the cancer is advanced or metastatic, and that treatment is possible, but not cure. I know what it's like to look at everyone else, to look at the world around you and think, how can everyone else's life go on like normal, when mine has completely changed? Don't they KNOW that nothing will ever be the same?? I know the cruel irony of a beautiful warm, sunny spring or fall day while life feels like it's under one big dark cloud. I am intimate with late nights of staying up with the stars because sleep eludes me and my mind won't shut off. I know what it's like to have friends never mention anything or ask questions, when all the while you just want to unleash information and feelings. People have surprised me, in both good and bad ways; I imagine the same with you, too. I don't know what it's like to have children and tell them the news, but I do know what it's like to want to - to need to - be strong for others. It gets easier, it does. And somehow, surprisingly, strength has a way of breeding more strength. I don't know what it's like to work full-time while my life feels like it's in limbo, but I know what it's like to have to study and perform when everything is uncertain. Though I don't know what it's like to have someone be diagnosed with a rare cancer, I know what it's like to have a loved one be diagnosed with a rare *enough* cancer (PPC) that no books are available at B&N on it. I know the feeling of going to the bookstore to find something - anything - to give me information on what I'm supposed to do, what I'm supposed to say, what's supposed to happen.....and just wanting to ask someone about it all.

In an alternate universe, or another lifetime, I would be the one listening to and helping you, instead of the other way around. In any other situation, I'd dip into my stash and give LiveStrong bracelets and the LiveStrong survivorship treatment binders and information or StupidCancer bracelets and pins....

I can't do much in this situation, but I can do this.

Cancer is a word, not a sentence. - John Diamond

this kind of work.

"This kind of work, it changes you....and it IS too easy to lose your way." These words were just spoken on Grey's Anatomy by the Chief of Surgery. He was talking to the physicians and telling them about his experience with a person with AIDS back when AIDS first came on the scene. And though Grey's is often far-flung from the truth, there is truth to these words. Hearing him say them...well, it sounds cheesy, but it reminded me why I am on this path and why I continue to slog through, despite setbacks and failures and struggle, despite having to take undergrad classes at the age of 29....I do it because I love it. I love oncology, and it feels right working in the field. I honestly cannot see myself doing anything else but something in oncology. There is something humbling in working with people and families living with cancer. Many days, you are the one being taught. There is something magical in the human spirit, that is amazing to watch and be a part of. Though it can be depressing work, the relationships and resilience and hope are also a huge part of it.

This is what I need to keep in the forefront of my mind when I get discouraged with my classes, or overwhelmed with memorizing. This is what I need to remember when I find myself thinking I'm crazy for doing this and not taking a job that is simply satisfactory but pays the bills. I need to remember my grandmothers' gratitude when I explained her pathology report to her. I need to remind myself of my dad's "thank you's" when I broke down my aunt's medical records in everyday language. Or R's pleased surprise when I call to see how she's holding up with radiation. I need to remember Erik, Sophia, Pop-Pop, Jennifer, Jaime N, Kendal....and all the other wonderful people I have in my life who have been affected by cancer. I am tired of hearing that someone else died, or someone has a recurrence. I'm frustrated that the scale is not tilting in a different direction with cancer.

But I guess that's why I chose oncology.

Or why it chose me.

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." -- Lance Armstrong

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.