Tuesday, September 3, 2013

Dare Not Linger

Until a few weeks ago, I had never heard of a HeLa cell and I had only vaguely heard of Henrietta Lacks. Really, I only knew enough to know that Henrietta Lacks was an African-American woman and that there was a book about her. Clearly I had missed the fanfare of Rebecca Skloot's bestseller, The Immortal Life of Henrietta Lacks, when it was first published in 2009.

This past week, while vacationing with my family, I read that book cover to cover, sometimes in suspense, sometimes in amazement, and a few times, with sheer, selfish terror.

In those pages that are now crinkled and covered with random notes, I learned about Henrietta Lacks -- how her great-grandfather was a white plantation owner and her great-grandmother, a slave. How she died from a horrifically aggressive form of cervical cancer back in 1951, when she was only 31 years old, not long after giving birth to her fifth child. I learned about Mrs. Lacks's family and some of what they have endured in the last half century. And I learned about a very dark part of our nation's history; terrible things that black people, the mentally disabled, and other vulnerable populations were forced to sacrifice in the name of science.

This past week, between trips to play mini-golf and jump on trampolines, and between diving for things that sunk to the bottom of the pool and playing Pictionary, I also learned about the precious cells that came from Mrs. Lacks's tumor.

Henrietta Lacks's cancer cells, taken by Johns Hopkins doctors for experimentation without her permission (though legally) back in February 1951, grow in cell culture in the most remarkable of ways -- where other cells die, these multiplied, and continue to multiply, by the millions, billions, trillions. Ms. Skloot explains one estimate of their quantity -- that if we could weigh all of the HeLa cells ever grown, the scale would show 50 million metric tons. It sounds kind of miraculous to me, and it may well be, even considering the scientific explanations of why these particular cells behave this way.

Most everyone who knows about HeLa cells appears to agree -- these cells have fueled the most significant scientific discoveries of the last six decades. Despite that they are cancer cells, HeLa cells apparently behave enough like healthy cells to allow scientists to test the effects of countless variables including HIV, space travel, exposure to nuclear energy, and chemicals for medicine or food. HeLa cells are still used in thousands of laboratories around the world.

In this post, however, I won't pretend to be a scientist and I won't recount much more of the story of Henrietta Lacks, her life or her death, her family, her doctors, or the intense bioethical, philosophical, and even economic controversy surrounding the use of her cells and their genome. The book, and recent news articles (including this one), do some of that.

I also won't write about what this book has meant to me professionally, even though I asked my mom to borrow her copy only because it was relevant to work I am doing in my job as a health care attorney. I could write a whole post on my colleagues and friends who introduced me to this book and about their undeniable care and concern for my well-being as I process it, but I won't do that either.

I won't even write about my opinions on the dark history that the book uncovered for me -- issues related to race, scientific development, truth, and justice.

Today, I will take on a single perspective and I will write about what this book means to me as a cancer patient.

First, a caveat. The last thing I ever want to do is infect anyone else with thoughts from my crazy mind. I've thought a lot about whether this post could inadvertently do that. It's kind of like when you hear a buzzing sound and you ask your friend, "Do you hear that buzzing sound?"

"Well, now I do, thanks," your friend replies sarcastically. Yeah, I don't want that to happen. If you don't hear the crazy, I don't want to point it out to you, but I definitely hear it, and in case you do too, maybe knowing that we're in it together will help both of us. Anyways, that's my fair warning.

*  *  *

About one year before I knew about Henrietta Lacks's immortal cancer cells, I knew about my own hopefully mortal cancer cells. I knew that they had formed a four-inch-in-diameter blanket of doom over my left breast (that was the ductal carcinoma in situ, or "DCIS") and that they had formed an invasive tumor beneath that blanket (the invasive ductal carcinoma, or "holy shit").

I also knew that the tumor carried with it the HER2 protein which, prior to the relatively new drug, Herceptin, would almost certainly have killed me, maybe even by now, for all I know. I was keenly aware of how much Dana-Farber, my doctors, and my family and friends were doing to save my life. I even knew that the chemotherapy drug, Taxotere, was key to my recovery, despite that it and I didn't exactly get along. But I had no idea that Henrietta Lacks deserved credit for saving my life, too.

Well, she does. Because on page 139, I learned that scientists used Henrietta Lacks's cells to test and develop chemotherapy drugs, including Taxol, which is in the same family of medication as Taxotere, my reluctant Ally. On page 142, I learned that HeLa cells played a significant role in creating "the first monoclonal antibodies, special proteins later used to create cancer therapies like Herceptin." And on page 234, Ms. Skloot explained that a young cancer researcher had used HeLa cells to develop the process known as fluorescence in situ hybridization ("FISH"). On August 18, 2012, I wrote about how the FISH process helped diagnose my cancer as HER2+.

Amazingly, all of that is only related to what I know about my own cancer treatment. I haven't even recounted the role that the HeLa cells played in fighting polio and hemorrhagic fever and countless other diseases from which I have been spared.

No doubt, on the most superficial and yet the deepest level, I owe Henrietta Lacks one gigantic Thank You. I wonder if she would have wanted that. If so, I wish I could have given it to her.

This week, as I read about cancer research, cell behavior, and the tragic death of a young mother, I couldn't help but have a queasy stomach sometimes. I knew I should have skipped the part about how aggressive Mrs. Lacks's cancer was -- about how when they performed an autopsy on her, they found tumors "like pearls" everywhere. (You hear that buzzing?) I'll never forget Chapter 5's title, "Blackness Be Spreadin All Inside," based on Mrs. Lacks's explanation to her cousins of what she felt in her body. But like the drivers who cause curiosity traffic at the scene of an accident, I couldn't turn away. Maybe it was because I'd been in my own accident, so I had a sick curiosity in somebody else's. Or maybe it was because I believe that Mrs. Lacks deserves me to read about her.

Last week was my favorite week of the year because all of my immediate family lived under the same roof. None of that was ruined by my reading this book. But of course, I've felt a lot of cancer since learning about HeLa cells -- ugly pearls in my head, my chest, my neck, and under my arm. I had a few nightmares that I was experiencing some of what Mrs. Lacks had experienced; that I needed to plan for my own demise but I didn't have enough time to do it.

I know that writing this is going to make some of the kindest people I know feel guilty; like they lead me into the darkness of those horrible thoughts. But they didn't. In fact, if they feel guilty, then I'll feel guilty about their guilt and then we're all in a hole. Truthfully, if I read this book prior to my diagnosis, I'm sure I would have felt tumors and had nightmares just the same. That's how my mind has always worked. Getting cancer just gave it a particularly narrow focus of things to worry about.

The good news is that nowadays, my queasiness and my craziness always subsides. Maybe that's thanks to my firmed-up hope muscles, my more experienced inner fighter, or simply, my Effexor. Or, at least last week, I can thank my brother, who distracted me every time I got up from reading in my outdoor chair with the fear of being thrown into the pool fully clothed.

Anyways, right now, I don't feel any tumors. At least, I don't think I do...but wait...is something buzzing?

Seriously, though, The Immortal Life of Henrietta Lacks showed me once again that I've come a long way since our last August vacation, when I cried after I inadvertently glanced at the Jimmy Fund Telethon on TV. Reading a book about cancer cells was, in a way, an enormous personal victory and I am sincerely grateful for it.

But that book did something even more for me. It gave me focus. Not focus on tumors or even on cancer, but focus on the importance of research. On the need to find a cure.

To best explain this new focus, I need to make a confession. Early on after my diagnosis, I would sometimes glance at the cover of a newspaper, maybe in a stack at a convenience store or on a countertop somewhere, and I'd hold my breath, praying that by some miracle, the headline would read something like, Cancer Cure Discovered. I wouldn't be disappointed when it didn't say that, mostly because I knew I was being ridiculous and because these thoughts were all so fleeting anyways. But I often found myself coming back to the very conscious hope that one day, there would be a cure to what I had first thought of as an inevitably fatal disease, for me and for anyone else with my "bad luck."

Then I learned about my treatment regimen and about Herceptin. I came to understand that modern medicine would give me overwhelmingly good odds, the hope for a long life, and the belief, albeit sometimes an unsteady one, that I am cured.

Now, I feel lucky beyond words to have gotten a kind of cancer that had been studied for decades and for which doctors can not only do something, but can bet that that something will actually work. I often feel completely spoiled that my story (knock on wood) appears to be such a successful one.

However, with any peak comes a valley and even from my awesome summer vacation, I remembered the valley that far too many patients and their families have been dragged through. These are people like Henrietta Lacks and Mary and Ashley and the families they left behind to grieve. These are babies, children, teenagers, and adults, inflicted with a disease or a version of a disease for which we do not yet have a cure. I won't lie -- sometimes I wonder why I get to live when they don't. Then I remember that "Why" is often the most difficult question in the world. How, on the other hand, is something over which I have a bit of control.

On the morning before my double mastectomy, I wrote a blog that I later came to despise (I despised only my own writing; obviously I still cherished Nelson Mandela's words). In fact, I even started to draft a post about how dumb my thoughts from that blog really were. I wondered to myself -- How could I have been so stupid as to think there would be one clear morning when I would wake up and declare triumphantly, I am cancer free! It's just not that simple. Cancer is a stealth invader.

Still, something brought me back to that blog today. I re-read Nelson Mandela's words:

I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can rest only for a moment, for with freedom come responsibilities, and I dare not linger, for my long walk is not yet ended.

As far as I know, I have been blessed with a cure to my cancer. I know that with that freedom comes responsibilities. I don't really know what those responsibilities are just yet, or what I will choose them to be. But I know two things with great clarity, the second one thanks largely to the Henrietta Lacks book. First, I know that writing can help some of us cope, and second, that research can lead us all to cures. Yes, writing saves lives, but that's still metaphoric. Research does it for real.

I don't look at newspaper headlines like I used to a year ago, although I do believe, in part because of Henrietta Lacks and her cells, that we will find a cure to all types of cancer, and to cystic fibrosis, ALS, AIDS, Alzheimer's, and other deadly diseases. I know, however, that my belief, even if shared by them, can't comfort Mary's children or Ashley's parents in their time of grief. Which is precisely why we dare not linger. We have a long walk ahead.

This post is dedicated to everyone walking in this Sunday's Boston Marathon Jimmy Fund Walk. And to Kate and Andy, who continue to help me on my walk, even though they are far too humble to believe that.

No comments:

Post a Comment