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.

Elizabeth Edwards.

Elizabeth Edwards passed away today, at the age of 61. I was lucky enough to hear her speak at the 2006 Lance Armstrong Foundation Summit on Survivorship, and she was amazing. She handled adversity with class and grace, and remained composed in the toughest of situations. While I am sad that she died, I find myself growing irritated with comments I'm reading on Facebook, about how it "shouldn't have ended this way". We can all agree that cancer takes too many lives too soon. But let me frame it another way: her doctors broke the news last week to her that further chemotherapy treatments would be unproductive. She spent the last several days pain-free, in her own home, surrounded by the people she loves, friends and family. Wouldn't we ALL like to die that way? Instead, too many people opt for painful treatments when they are not likely to work - a recent article said that patients spend the most money, treatment-wise, in the last 3 months of their lives, on invasive treatments that add little to no benefit. Elizabeth Edwards's doctors were compassionate and courageous enough to tell her that their options had run out and prevent her from going through unnecessary physical and emotional demands. They did not let ego or the relentless "fighting against disease" sway them and tell her to keep going with chemo.

Anyway...it's been a long day and my brain is exhausted, but I just needed to vent. Here's an excerpt from a message she posted on Facebook yesterday:

"The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human...."

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.

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

just another summer day

Life has a funny way of working out. I'm not going to discuss specifics, but I got an interesting phone call about a possible job in NYC the day I moved into my new place here in NC. I then had a surprise phone interview yesterday and I'm waiting to hear about an in-person interview. Craziness. 

I'm watching Wimbledon right now, and it always reminds me of high school summers -- I'd watch Wimbledon in early/mid-summer, and usually the US Open coincided with tennis tryouts, so I'd come home from tryouts/practice and watch tennis. I would measure my summers by tennis. When my dad got home from work, we'd go to the tennis courts and play a few sets, and then I'd run the lines. Summer has always been intertwined with my racquet getting re-strung, buying a new grip cover, and popping open new cans of tennis balls. I still love tennis as much as I did, although I don't get to play nearly as much. But that feeling of being back on the court, thwacking a two-handed backhand.....losing myself in the flow of the game....the tennis court was somewhere I was confident, I was in my element. In the midst of confusion, it was a refuge. Tennis just clicks for me. I miss it a lot. 

In the wake of Michael Jackson and Farrah Fawcett's passing, someone also worth mentioning is Dr.Jerri Nielsen Fitzgerald. She was the doctor who was in Antarctica and diagnosed and biopsied her own breast cancer. I read her book, Ice Bound, which tells her amazing story. She had chemo airlifted and sent to her, and her cancer went into remission, but returned 5 years later, and metastasized to her liver, bones, and brain. She was only 57, and died last week as well. 

When I hear things like that, and think of everyone I know who has been diagnosed, it just reminds me why I am pursuing oncology. But if I get this job....I might have to put that to rest. I'd still be working in oncology....but not as a physician. It brings up a lot of tough choices and lots of emotion. 

here we are, at your cervix.

So, this article in the NYTimes talks about a new DNA test that could make Pap smears a thing of the past. It still requires a cervical scraping, but the sample is mixed w/various agents and read by a machine. Basically, it picks up HPV, the high-risk ones that are more likely to cause cervical cancer. People are saying this could mean a switch to getting Paps ever 3, 5, even 10 years. But what about those medical anomalies? What about those women whose Paps never show HPV but end up having cancerous conditions? I have mixed feelings about this. I don't think this is a substitute for Paps, but possibly an added test. I know it might not be cost-effective, but I'm just not sure if women are ready to feel comfortable NOT getting Paps every year. I wouldn't want to go every 3 or 5 years. Better to be safe than sorry, in my opinion. 

it never ends

Shit. Shit shit shit. Supreme Court Justice Ruth Bader Ginsburg has had surgery today for pancreatic cancer. She's being treated at Sloan-Kettering; you can read the article here. I hope she is one of the lucky few whose cancer was caught very early and hasn't metastasized. 

Kay Yow, part 2

As I blogged about this past weekend, NC State's women's basketball coach Kay Yow passed away from breast cancer on Saturday, and here in Carolina, it's a pretty big deal. There's a memorial ceremony being broadcast on Friday, and Hoops for Hope (which she was helping to advertise) will occur in early February, and this time, it will be a celebration of her life. I think it's important to honor everything she did (she was a coach for the USA women's basketball team in the 1988 Seoul Olympics, among many other things), but I just hate the "battle" imagery they use. Like, "she lost her battle". She didn't lose anything. She fought like hell for 20 years. She managed her cancer for 20 years and coached lots of players. She got 20 more years with her family, while being able to have a happy and productive life, and had good quality of life. She didn't lose. 

Nike.com has several products whose proceeds go to the Kay Yow/WBCA (women's basketball coaches association) Cancer Fund. On February 1, the "think pink" collection will debut, with sneakers and clothes, among other things. I am currently fiending for a pair of pink basketball sneakers and the pink t-shirt. So maybe, wouldn't it be nice, when all the Valentine's day stuff starts being shoved down our throats, that we ignore all the Hallmark Holiday paraphenalia, and buy some pink things that actually help other people? You have to wear t-shirts and sneakers anyway - why not buy things that are for a good cause? Or donate to a cancer fund or organization in your loved one's honor/memory. Or volunteer your time Valentine's day weekend at a hospital, make Valentines for kids who are in the hospital....or simply hug those you love and tell them you're happy they're alive. 

PhD ponderings

What would I look like without hair? I met with someone from St.Baldrick's tonight, which is an organization that raises money for pediatric cancer research by holding head-shaving events. I mean, hair grows back...and it's for a good cause. I probably won't shave my head, but I'm certainly pondering it. Of course, if I don't get into a PhD program, I don't think it would be so good to have a shaved head with job interviews, and my graduation pictures might not look so great. 

Speaking of PhD programs, I'm getting incredibly anxious. And I know it's stupid to be so anxious, because people have REAL problems, and here I am, worried about this. But I just feel like I've worked my ass off for this, and this is my dream - and if I miss this shot......well....I'm not sure how I will feel. I'm not sure if I can forgive myself if I don't get in. I don't think I've wanted anything as much as I want this. If I don't get into a program, I feel like everything I've done is a waste. And I know I shouldn't feel that way, but I do. 

I need to do some cognitive reframing. Where's Aaron Beck when you need him?

miraculous disappearing cancer?

Here is an article in today's NYTimes about how some cancers "might go away on their own". Call me a cynic, but I'm not buying it. They do bring up rare cases of melanoma and neuroblastoma, but those are the exceptions, not the rule. They bring up the issue of breast cancer - and how this might, upon further research, let women with invasive breast cancer "watch and wait" on a lump. But what if the cancer doesn't go away on its own? What if it gets bigger and then the cancer is at a more advanced stage by the time one decides to treat it? I don't know. I have mixed feelings about this. There will be people who read the article and are ill-informed and not ask their doctors about it and might have completely different conclusions that are harmful. I've grown increasingly wary of articles like this.....

not so fast, LabCorp

Back in September, I had blogged about a blood test called OvaSure, that claimed to detect ovarian cancer at its earliest stages - today, in the NYTimes, there's an article that talks about how LabCorp actually marketed this test WITHOUT FDA approval, and that the FDA actually wrote a letter to LabCorp, saying "it may harm the public's health". The Society of Gynecologic Oncologists did not approve of the test, either, saying it wasn't accurate. Interesting. 

cancer costs

This morning there is an article in the Wall Street Journal about the economy and cancer care/cancer groups battling it out for money, since there's just not enough of it. This year, cancer will cost America at least 89 billion dollars - and the overall budget for research at the NCI is only about 5 million. hmmmm. Does that seem right to anyone else? Plus, the Dept of Defense's breast cancer research project will get 150 million dollars next year. Don't get me wrong - breast cancer is a horrible disease - but from a research/survival standpoint, five year survival rates for both breast and colon cancer have risen to more than 90% because of early-detection, etc. But only about 15% of people with lung cancer will be alive more than 5 years after diagnosis. Breast cancer has gotten so much funding because they mobilized forces in the 1990s - they lobbied Washington, they demanded more money and research and attention - it's time for other cancers to do the same. And not just the sexy, "media-friendly" cancers. Let's talk about thyroid cancer, and stomach cancer, and mouth cancer. Let's talk about sarcomas and brain tumors and multiple myeloma. Enough with the ribbons - let's kick some butt. 

anti-cancer?

The NYTimes has a great article this morning about that new book that's out, Anti-Cancer:A New Way of Life. They bring up excellent points - about how he talks about all these foods that work minimally in the lab in destroying cancer cells, but really, once they're in the human body, we don't know what they do - if anything. But unlike a lot of people, he actually does acknowledge this. More interesting (at least to me) is that he is of what I call "the old school" - the whole "cancer personality" thing. Personally, I don't buy that. Do I think a positive attitude helps the immune system? Of course. But do I think some people's personalities helped feed their cancer? Not a chance in hell. Of course behavioral factors play a role, and emotions and personality affects behavior, but I do not believe in the "Type C" personality, as this was once known as. Do I think someone can have the whole "anti-cancer" personality and healthy lifestyle and still get slammed with pancreatic cancer or lung cancer? Of course. I think it's a very fine line, when you start talking about that kind of stuff. Sometimes it smacks of blaming the victim - and I think many patients already feel a kind of pressure to be positive 24/7, to not show their fear, and to be "strong", and this just adds added stress and pressure to "perform".

the unpopularity of oncology

I got an article sent to me in the mail from my grandparents, and the title was: Wanted: Cancer doctors - stat. By the year 2020, it's estimated that we will be at least 4,000 oncologists short of what we need. I knew this already, and it was one of the reasons why I seriously considered a post-bac right before I came down here for the MPH. I mean, seriously. This is when I wonder what I'm doing. 

weekend update

I just read that Paul Newman died yesterday from cancer. Depending on what article you read, the type of cancer is either unnamed, or described as lung cancer. Many people know Newman as the actor, but he also had an organic food line, Newman's Own, which gave all its profits to charity. It has been estimated that Newman's Own has given $200 million to charity, including a camp for terminally ill children. Dealing with cancer is hard for any family, and even if you know death is imminent, it's still a sort of stunned shock when it actually happens. 

I have to admit, I fell prey to the pinkwashing of October today (and it's not even October yet). I was at OfficeMax and I caved and got pink file folders (I needed folders anyway), which helped support the Breast Cancer Research Foundation. And if I'm being honest here, I will also admit that I bought a breast cancer shirt by Under Armour at Dick's Sporting Goods. *sigh*. But I draw the line at buying ANYTHING that supports Komen.  

fighting cancer....and losing

Okay, what could possibly prompt me to post a second time within an hour? The new issue of Newsweek, that's what. It's the one with Sarah Palin on the cover (although what magazine DOESN'T have Palin on the cover this week? you go, girl). But it also has an article entitled We Fought Cancer......And Cancer Won inside. And as I read that, something akin to relief flooded my veins. Because I thought, finally - an honest article that isn't sugarcoated and whitewashed and falsely optimistic. There is a quote in the article by Boston oncologist and cancer survivor Therese Mulvey - "The metaphor of fighting cancer implies the possibility of winning. But some people are just not going to be cured. We've made tremendous strides against some cancers, but on others we're stuck, and even our successes buy some people only a little more time before they die of cancer anyway......With cancer, sometimes death is not optional." And though some might call her pessimistic, I agree with her that the stories of how breast cancer rates have fallen and colonoscopy and fecal occult blood testing have reduced colon cancer allow a false sense of optimism or safety to occur. Cancer still will kill 565, 650 people in the United States this year. That's more than 1,500 people a day. When you read stuff like that, we're still nowhere where we need to be. But, like Otis Brawley of the ACS has said, "One tumor is smarter than 100 brilliant cancer scientists." Harold Varmus, the president of MSKCC, has even said that cancer "...is commonly viewed, as, at best, minimally controlled by modern medicine, especially when compared with other major diseases." Progress among cancers is uneven, and mortality rates vary widely. The old thinking that 5 years of remission means cure is just not true. Breast cancer is known to recur 10, 15, 20 years later. Childhood cancer treatments can cause later malignancies. Micrometastases can show up years later. 

This is what we fight every day. When I dwell on it, the task to figure anything out seems insurmountable. It's kind of depressing. But then I think about my summer at MSKCC, and how NO ONE seemed beaten down or discouraged there. The brainpower and the passion there were invigorating. And it reminds me that this is my goal, this is my chosen field. I can do this. We can do this. 

The only thing that annoys me in the magazine is that Stand Up 2 Cancer has taken out ads on like, every other page practically. In the middle of the article is a 5-6 page advertisement for it. I'm sick of hearing about this. Yeah, it's great, you're raising money, thanks. But I just find it overproduced and glossy and -- dare I say -- misguided. At this point, it's NOT ABOUT THE CURE. It's about survival, and living with cancer. This is a much more realistic way of looking at it. By focusing on cure I feel like you're leaving out a huge chunk of the population. 

Anyway, I'll step down off my soapbox now. 

no such thing as a bad day

It's pouring rain outside and I just woke up, because of a fortuitously canceled research team meeting. It's a good day to stay in bed under the covers. Unfortunately, as a graduate student, I don't really have that option today. And considering I stayed in bed until 11:30, that's way more than enough. I do like the sound of rain, though. 

Today is the 4 year cancer anniversary of someone important in my life, and I just wanted to acknowledge that, because she is doing wonderfully today, and I feel like we need more attention paid to these stories. It's also important to me because it was her breast cancer that propelled me back into studying oncology and, though no one could have imagined at the time, given my life its ultimate focus and goal. When I look back, I was terrified at the time, but eventually that fear gave way to action and learning, which fed into becoming an advocate and activist in the cancer community. 

I was reading the NY Times this morning online and looking back in the archives, and there is a book by Hamilton Jordan, Jimmy Carter's former Chief of Staff, who struggled with four different types of cancer. He wrote a book, "No Such Thing as a Bad Day", and in it, he had "Top 10 Tips for Cancer Patients". I'd like to write them here.

#1: Be an active partner in the medical decisions that are made about your life.

#2: Seek and know the truth about your illness, and prognosis.

#3: Get a second opinion. 

#4: Determine upfront how broad or narrow your physician's experience is. 

#5: If you have a poor prognosis, or rare form of cancer, try to get to a center of excellence. 

#6: Do not allow your caregivers to project their values, goals, and expectations onto you.

#7: Understand the economics of cancer care. 

#8: Ultimately, find a doctor that you trust and believe in. 

#9: Treat your mind as well as your body.

#10: Your attitude and beliefs are your most powerful weapon against cancer.