Saturday, June 1, 2013


Sometimes I feel like a pretty experienced cancer patient. Despite months in a cancer cocoon, I’ve picked up a decent amount of medical lingo and I can rattle off the names of several chemotherapy drugs like they’re my phone number. I know the ins and outs of the Dana-Farber parking lot and the “Dining Pavilion” (if you look for “Cafeteria” on the directory board, you won’t find it). I know just when to put my arm out for the Yawkey 9 check-in person to tape the ID bracelet around my wrist, and even given my terrible sense of direction, I can move between Dana-Farber, Brigham & Women’s Hospital, and the Shapiro Cardiovascular Center with ease.

But then there are times when I feel like I don’t know crap about crap. That happened a few weeks ago. Someone asked me about “my most recent scans.” Hum. What scans? I thought to myself. Had I had scans? 

Sometimes when I try to think of the month or even the year, I blank out for a moment or two. That happened pre-cancer too, (although less so, pre-kids), so I’ll continue to blame the kids and not the cancer. But even so, when faced with the scans question, I had to stop and think if I was missing something. A few thoughtful seconds later, I had convinced myself that my gut reaction was correct – I had not had any “recent scans.” I admitted that I had absolutely no idea why.

Obviously, this made me think...Why don’t I get scanned? If, Heaven forbid, I fall in the small percentage of people for whom Herceptin doesn’t work, wouldn’t it be good for them to find the tumor that could be growing in my chest wall or my brain or wherever as early as possible? Maybe they wait until after the year of Herceptin to starting the scanning? I wondered about this, but didn’t know if I really wanted an answer. (My rule with my doctors is not unlike my rule with high school students or even clients—I don’t typically ask questions that I may not want the answer to.)

Last week, however, I woman-ed up, asked Danielle why I don’t get scanned, then braced myself for the answer (no, I didn't have my hands over my ears although I thought about it). She explained that for patients like me, there is no difference in life expectancy if they find the metastasized tumor early, through a scan, or later, because I end up feeling something that flags it. She stressed that they hope to have gotten all of the cancer cells with the chemo and that Herceptin does the rest. Danielle explained that many people have one or more odd growths somewhere inside their body and while those masses are not necessarily dangerous, for a cancer patient, they would cause much anxiety and likely, unnecessary biopsies. We also don’t want to expose you to anything that could increase the possibility of a recurrence when there's no data to show that it's useful, she concluded.

As much as I valued my cancer cocoon where I would never have asked a question like this, I have to admit, it felt oddly liberating (although still dreadfully uncomfortable) to know the truth.

But there’s another piece of the truth that I want to share; a much better one. At the end of my appointment with Dr. Bunnell, my Dad said something in his enthusiastically optimistic tone about how far they have come in the last five or ten years. Like me, I think he wanted to hear some good news to wrap up the appointment. Dr. Bunnell agreed with my Dad. He said that Herceptin has changed his entire career—that prior to it, he had to tell HER2+ breast cancer patients that he was "so sorry." Obviously I've known that the protein had previously been considered a death sentence but unwittingly imagining Dr. Bunnell delivering that news to me and my family in a windowless exam room brought a flash of horror. Luckily, I kept listening.

Dr. Bunnell went on to say something that, like so many things my doctors tell me, I have repeated in my head countless times since. He said that he believes that HER2+ breast cancer will be the first type of cancer that “we cure.” That sounded as awesome last week as it sounded the first time I heard it back in August in the same telephone call when Dr. Bunnell he told me that my cancer was HER2+. But he wasn’t done and this time, he added something that I don't remember from back in August (although back then, I may have just not understood its importance). He continued, “And that’s in the metastatic state.” I froze and the hair on the back of my neck stood up.

I started to cry—one of the happiest, most hopeful cries I have ever cried. So if this comes back, you may be able to do something? 

We would do something, he assured me. 

Of course, I know that that “something” wouldn’t necessarily get me to my kids’ high school graduation or to meet my grandchildren, but I know exactly what it would get me. It would get me the hope of being able to be there despite that the cancer had spread. And no matter how much I write or what words I choose, there is absolutely no way I could ever explain the electric feeling of hope that Dr. Bunnell's words gave me last Wednesday morning and many times since.

* * *

In a small apartment in Dorchester, Julia is living her last days. A constant flow of morphine makes her very drowsy. Her memory, and her ability to lift her hands or feet is almost completely gone. When her daughter, who I'll call “Nina,” texted me a photo of the two of them on Nina's high school graduation day the week before last, I saw that Julia’s face was so bloated that she looked like an entirely different person. But still, she was smiling.

About a year and a half ago, as my colleague and I worked with Julia to plan for her children’s future without their mother, she had already defied all odds. I remember Julia saying that she wanted to live long enough for Nina to graduate from high school. But at the time, that was a year and a half away. That's impossible, I thought to myself while I said something out loud that conveyed a positive and hopeful message. Now, I'm embarrassed that I doubted Julia.

From incredible individuals like Julia and Ashley, I have learned that brave mothers and daughters, fathers and sons, and wives and husbands will fight for the ones they love. They will defy all odds to survive for their daughter’s high school graduation or their brother’s wedding. They will dare to hope when so many others, despite their sincere well-wishes, are, secretly, grappling with what they see as an imminent demise.

In her book, The Still Point of the Turning World, Emily Rapp explains:

Most disturbing of all is a common reaction that is rarely questioned: what people view as the “tragedies” of others makes them feel better about themselves. If somebody else has it worse than you, you can walk around feeling lucky for a few minutes. In the weeks following Ronan’s diagnosis it upset me to think that Ronan and I had no purpose at all in this world other than to serve as reflections for situations other people feared. 

While I don’t question or judge the fact that the author felt this way (and had every right to feel this way), I have to admit that I do not share her sentiment. That doesn't make me better or worse -- it just makes my feelings and my perspective different. Personally, I don’t think that people generally see “the tragedies of others” and "feel better about themselves." Seeing Julia die of breast cancer doesn’t make me feel "better" about my potential cure. It makes me sad and mad that she doesn't get what I have. Seeing Ashley fight through risky surgery after risky surgery does not make me feel good in even the most minute of ways. It makes me wish that she could have gone home and healed like I did. These women are not "reflections for situations" that I fear. Do I fear those situations? Absolutely. But to say they are “reflections” implies that I care about these people only because I care about myself and that’s just not true. I think people, in general, are better than that.

In all honesty, if me having cancer makes someone feel better, I’m glad. I really mean that. I hope it makes a father leave work in time to kiss his kids goodnight when otherwise, he may have stayed late and missed them. I hope it makes an aunt or uncle visit with a niece or nephew even though it is extremely inconvenient to do so. I hope that it gives someone the feeling of being truly valued when he or she donates platelets for the first time or joins the bone marrow registry. I hope that my story makes a woman -- young or old -- celebrate when her mammogram or biopsy comes back negative. I hope that my life makes some other person love his or her life a little more, not because I'm a reflection of anything, but maybe just because he or she more clearly and peacefully understands that every person's time on Earth is precious. And the most precious of things are usually finite. 

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