Everything ChangesThe Insider's Guide to Cancer in Your 20's and 30's
John Wiley & SonsCopyright © 2009 Kairol Rosenthal
All right reserved.ISBN: 978-0-470-29402-4
Chapter One Ramenomics
When Nora Lynch opened her mouth, an odd hybrid of British and Long Island accents flew out. As I hovered over a voice recorder for my first cancer conversation, this blind encounter with Nora held a palm-sweating edge strikingly similar to my first foray into the online dating world just two weeks earlier. Although I had previously carried on candid, one-on-one conversations about cancer with Seth-a lymphoma patient in San Francisco who became a close friend-our chats were absent a microphone and the expectation that our words would be immortalized in print. Nora was equally anxious because she had never encountered anyone her age who had cancer.
Nora had replied to my posting on the Washington, D.C., Craigslist. We exchanged a few e-mails and agreed that I would travel to the D.C. area. We met in a chaotic Metro parking lot in suburban Virginia during rush hour. We each had an abbreviated list of physical identifiers so that we could recognize the other. Nora: a twenty-four-year-old woman, of medium height, with short black hair and pale skin. Me: a thirty-one-year-old woman, tall, with long brown hair. Nora looked Goth, clad in a black mesh shirt and black jeans despite the thick July humidity.
Seeking privacy from her two roommates, we parked ourselves on a cement-slab bench in a square in Old Town Alexandria. Loud buses hurtled past and kids screamed and splashed in a fountain as we took refuge in the story of the last nine months of her life. Despite my twinges of nervousness, I was confident about the parameters I had devised for these conversations. I had no prepared list of questions, I'd willingly share as much of my cancer experience with her as she wanted to know, and we needn't tell our stories in chronological order. We agreed that I could ask her anything, and she was free to skip over any answers and subjects that she wished not to talk about. Nora asked to use a pseudonym, out of fear that future employers could discriminate against her in the hiring process. She had just come from a doctor's appointment to have the site of her chemo port checked. I started our conversation by asking about her appointment, but she quickly dove back in time to the beginning of her saga. She spoke with biting humor and self-deprecation, mixed with intervals of steady, forthright contemplation.
"I was diagnosed with lymphoma nine months ago. During the whole nine months of cancer, I've had really great fantasies about finally being able to go to work. When I was diagnosed, I had just finished my graduate degree from the London School of Economics. I was so eager to be supporting myself and feeling like an adult at last. In college, everything was being done for me by someone else. My dorm rooms were found for me; my schedule was being set by someone else. I wanted to take care of myself for a change, but I suddenly entered this period of cancer, of not being able to do the most basic things for myself. It was like, Great, now that I've graduated college and am ready to become independent, I'll go back to infancy. I really feel like I was shot down by circumstances on the eve of becoming a financially independent adult.
"After I left London, I came back to Long Island, where I thought I was staying with my mother in her one-bedroom apartment for two weeks. I had a Long Island doctor look at this lump I'd found on my neck two weeks before, when I was finishing up my thesis in England. You know, when I got my positive biopsy report back from the doctor, I didn't even feel too upset. I kind of felt a sense of inevitability. 'Cause before I was diagnosed and telling friends and family that I might have cancer, they were all saying, 'No, no, I don't think you have it. I feel like you don't,' but my gut was saying something else. When I got the news, I thought, Okay, yeah, it figures, damn. I was a very casual smoker, maybe three cigarettes a week. I went outside and had a smoke and that's the last cigarette I've had. I didn't want to be one of those people standing outside a hospital with a drip in their chest smoking a cigarette. That's just too dark, even for me.
"My mom was at work when I got the news, and I knew she was going to freak out. Hearing her break down on the other end of the phone was probably the worst part of the entire cancer experience. She wanted to come home, but I preferred to be alone. My parents got divorced about two years ago. My dad. Oh God. Bless him, he can't help it. He's got obsessive-compulsive disorder and a whole host of other mental problems. When I called to tell him, he replied, 'Bummer. Seen that new Harry Potter movie?' I said no, and seriously, that was pretty much it. Once in a while he'd send me a postcard: 'So how's that cancer thing going, Nora?' It's like, Great, Dad, I'm having a great time. My grandparents tried to give us emotional and financial support as best they could. My sister is twenty-three. She came out from New York City quite a lot to check on us. But otherwise, it was just me and my mom. My mother had actually just been diagnosed with colon cancer two weeks beforehand."
As Nora spoke, I worked hard to bite my tongue, to not shout out, "What the hell are you talking about? You and your mom both had cancer, at the same time? How do you even begin to handle that?" I was shocked by how unfazed Nora seemed by the whole situation. Listening to her story, I so easily forgot what I have come to learn: that you play the cards you are dealt. You adapt. A life that appears freakish, bizarre, and extremely unlikely to the outside world can suddenly become normal to you because, really, there is no other choice but to move forward.
As Nora's situation spun in my head, I tasted some of what my friends experienced each time I dropped my little bombs of cancer news on them: "I have cancer." "My cancer has metastasized." "I need to repeat treatment again."
They either asked aloud or with a silent, quizzical look of wonderment the same question I now had for Nora: How do you deal with that? Sitting on this park bench, agape at Nora's situation, I realized that the inability to conceive of someone else's monumental distress is a luxury. There exists a thin threshold where concern for someone's well-being suddenly transforms into gawking. I caught myself at that threshold with Nora and decided that instead of asking how? why? what? I would do the best thing that anyone who knows someone with cancer can do: I simply listened.
"My mom and I were always really close, though we got a lot closer during our big cancer winter. We drove each other to chemo, spacing it so one would feel decent enough to do it for the other. I wanted everything to be reciprocal like that, but I think she mostly took care of me because I was sicker. We lived under each other's feet that whole six months in a very small one-bedroom apartment. Occasionally, it would become a bit much, but we'd just snap at each other and get it over with. We're very similar, despite the fact that she's very religious and I'm not at all. We agreed that it sucks that we both had to have cancer, but I'm glad that we had it at the same time. We'd joke about it, asking if we could get two-for-one discounts.
"The financial implications of dealing with cancer are huge. As a student in Britain, I was treated like a regular citizen and got their national health insurance. If I had stayed in Britain, I would have been fine. A month before I came home, my mom had to drop me or my sister off her health insurance plan because her employer didn't want to carry two additional people. My sister has asthma, so my mom thought, 'Nora's healthy. Let's drop her.' When I was diagnosed, I had no insurance, no job, and about seven thousand dollars left over from my college fund.
"I footed the bill to see a doctor at Sloan Kettering; she seems to be the top lymphoma expert in the world. I got her consultation but couldn't afford to get treatment at Sloan because I didn't have any insurance. She set out a very aggressive chemo regimen. Some think of Hodgkin's lymphoma as the pussycat of cancer, a couple whaps of chemo and you're done. Non-Hodgkin's is a lot nastier because it moves faster and is harder to kill. Mine is somewhere between the two; it's a nastier, more ambitious version of Hodgkin's. Since my cancer is a weird variant, the doctor couldn't give me numbers on what my chances were.
"My original plan was pretty neat. I was going to apply for Medicaid and get treatment from my mom's oncologist, right in our town, but I didn't qualify for Medicaid because I had over two thousand dollars in savings. They instead referred me to a state plan for people who are slightly less horribly poor, for people who have more than two thousand dollars in savings but earn less than seven hundred fifty dollars per month. The state insurance plan said, 'We pay for chemo, but we only cover certain drugs and yours are not on our list.' This is one week before I had to start chemo, and the doctor at Sloan had said I must start by X date; otherwise, the cancer may move so fast that my chances of surviving were going to decrease. It's like, I'm not calling to have my toenail removed, guys. This is kind of life or death. The state plan told me to apply for emergency Medicaid. By this time, I fit their criteria because in the three weeks since I originally applied, I spent more than five thousand dollars on hospital bills. Medicaid said they'd speed process me so I could start in a month or two. I needed to be halfway through chemo in two months.
"I just thought, Wow, I'm going to die because I have no money? I mean, I went to a succession of really, really good schools. I viewed myself, and people always told me, that I was a very promising person. And at the end of the day, the state didn't give a crap because I didn't have any income. They were kind of like, 'You can die, whatever.' That's when I really felt the 'Why me?'-not because of the cancer but because of the healthcare system. People aren't judging me as a person; they are only judging my financial situation.
"I couldn't wait for Medicaid to kick in, so instead of going to a private oncologist, I went up to a state hospital forty-five minutes away. I asked for a loan or financial aid. They were like, Fuck it, we'll just start treating you, sooner or later the money will come together. They didn't care. They were so used to people being in this financial situation. They said, 'We'll work out a payment plan. If it turns out you owe us thirty thousand dollars, then you can pay us over time.' In the end, the state hospital sent my bills to the state insurance plan that originally said it didn't cover any of my chemo drugs. The state insurance plan paid the hospital without even blinking. All that time, I could have just gone to my mom's private doctor in our town, and instead I had to drive forty-five minutes to get to treatment at a state facility. They had, quote, just gotten it wrong.
"How do you deal with health insurance when the people who are administering it have no clue how it really works? The people on the phone at the state insurance office only have a high school education, and a lot of them hardly speak English. It is hard because these are very complex things they have to describe. I got so much wrong information, 'We don't cover this. Yes, we do. Maybe we don't.' When they tell you a doctor isn't in their plan, they are often working off information that is more than two years old. It's like, Get it right, God damn it, or find someone who knows what they're talking about because I can't sit on my ass and go, Well, maybe I'll get chemo or maybe I won't. To have to deal with that when you're very ill, even if you're completely healthy, it could drive you mental.
"At the end of chemo, my doctors didn't want to give me both the CAT and the PET scans because it was on the state's bill instead of private insurance. I thought, If I croak because they won't give me both scans, aren't they kind of wasting the money they've already invested in me? When I complained to my mom's oncologist, he said, 'Well, you're getting clean needles, aren't you? There are places in the world where you wouldn't even get clean needles. You should be grateful.' After he left the room, I turned to the nurse and said, 'I can't believe he said this to me,' to which she replied, 'Well, it's our tax dollars.' I was like, Holy shit, do I have less of a right to live than people who are making ninety grand a year? I am begging, give me six months of life and I will have a job where I could pay for this myself.
"My doctors were very condescending to me. I don't know if it was because I was young or because I was a girl, or because they were burnt out and needed vacations, or a combination of all those things. I thought, Wait until I take over the world. They'll be the first ones up against the wall!"
Nora leaned forward into my tape recorder and spoke loudly and slowly: "Get jobs with benefits, everyone! Don't fuck around with not having insurance!" It was clear that Nora and I had both staggered through the wretched abyss of health-insurance hell. We were not members of that mythic tribe of young adults who are so often scapegoated by policy makers. According to the urban legend, a sizable chunk of our generation chooses to forgo insurance, cracks our heads open rock climbing, and allegedly makes the whole system go belly up. No, we were real creatures, typical twenty somethings, who got dropped from insurance while switching from college to the work world or from one job to another.
I had left my job three weeks prior to my own cancer diagnosis, and when I tried to make an appointment for a second opinion, I discovered that my employer had forgotten to submit my COBRA papers. I had cancer and no insurance. On the phone for weeks with my HMO, COBRA, and hospital administrators, I stretched the truth and fabricated enough red ink to reinstate my insurance and receive a second opinion from a prominent university teaching hospital. I successfully scheduled surgery and radiation treatment with top-notch doctors using fudged health insurance. Riddled with anxiety, I hoped that my house of cards would not come crashing down until I either obtained legitimate insurance or made it through treatment.
I needed a long list of questions answered about how to obtain legitimate, affordable insurance with my newly existing condition. Although the university hospital's facilities looked like a country club, with a reflecting pool in the lobby beside a grand piano, its social worker was useless. My own limited knowledge of applying for disability, which I had learned from a flyer, was greater than hers.
I dove into a long process of hard, desperate phone calling and found Nicola, a law student who took me on as a school project. We were the same age, and it put me at ease to talk about these overwhelming administrative issues with someone who was approachable and did not scoff at my naiveté. She completed my paperwork when the side effects of my meds made my head spin too hard to concentrate, and spoke for me at my Social Security interview. She made the mysterious and intimidating healthcare system approachable and surmountable. She helped me organize my medical records and legal documents and appealed for an eighteen-month extension of my COBRA benefits and won. Nicola also discovered that the State of California owed me money for disability that I had not known I was entitled to. I cried the day that she brought me a $9,000 check, which without her help would have sat in the state's coffers instead of in my bank account. The money paid for my rent and groceries for an entire year.