5 Realities Of Life When You Know You're Going To Die
Cancer must have hired a hell of a PR team in the last decade. Sure, it remains the most frequently invoked worst-case scenario in modern life and is projected to claim nearly 596,000 lives in the U.S. this year, but most public awareness campaigns and the media paint a rather rosy picture of the ordeal. Fictional cancer sufferers can expect baldness and some puking, but they also generally get better. It's easy to forget that once cancer reaches a certain stage, death is not a matter of if, but when.
Cracked spoke with three young women -- Susanne Kraus-Dahlgren, Jo Evelyn Ivey, and Christina Shaw -- who all have Stage IV metastatic cancer, meaning the disease which originally crashed in their breasts or lungs has set up camp all over their bodies and shows no signs of leaving. They told us ...
Cancer Doesn't Care Who You Are
Christina was a little shy of her 30th birthday when she was diagnosed with Stage IV lung cancer. Everyone was confused, seeing as how she was a young nonsmoker and, to the best of her recollection, had never set foot in a uranium mine. "I still remember my first visit to a doctor I hadn't seen yet," she says. "When he walked in and saw me for the first time, he was visibly surprised and commented that he thought my chart belonged to a 90-year-old lady."
It wasn't necessarily an insult; 97 percent of lung cancer patients are 40 or older, and the average age at diagnosis is 70. Yet there's been a significant uptick in lung cancer diagnoses among young nonsmoking women, thanks to a mutated gene that's begun working its way down through the population, in the most unwelcome trend since Uggs. It can take a long time to diagnose these women, largely because active teens and 20somethings don't tend to get body scans for every little thing and few doctors entertain the possibility of lung cancer. By the time it's detected, it's a Breaking Bad situation. Christina had a persistent cough for two years, but she didn't think much of it until she started getting pain in her hip so severe that she sometimes had to walk with a cane.
Quite like the aforementioned 70-year-olds, coincidentally.
"The doctor told me I had a large mass in my lung -- the size of my fist -- and it was most likely cancerous, since there were other lesions throughout my body," she says. "The cancer had spread to my lumbar spine, my right hip, my liver, my lymph nodes, and my brain, which unfortunately meant it wasn't curable, and I would only receive palliative treatment."
It was like rolling snake-eyes on 100-sided dice: Only 2-3 percent of people who get lung cancer are under 40. The odds are slightly higher for breast cancer, accounting for about 5 percent of all cases. Susanne just squeaked into that exclusive club when she found what she thought was a cyst when she was 39, and Jo Evelyn was only 31. "I thought it was funny," Jo Evelyn says, "'I'm having a really bad week, and now I've got this lump.'"
Kinda puts that lady at work swiping your lunch in perspective, though.
Life Goes On, Right Up Until It Doesn't
Susanne likens having a metastatic diagnosis to being "stuck in the middle of the road with a bus barreling down on you, but you can't tell how close it is or when it's going to hit you." Metastatic breast cancer has a five-year survival rate of 22 percent, which is a grim prognosis, to be sure, but it's also wildly variable. Susanne and Jo Evelyn have been told by their doctors that they'll never be rid of the cancer. "To stop treatment would mean I'm going into hospice," Susanne says. In all likelihood, it's simply a matter of when, but it's always in the back of your mind that you could be one of those miracle cases, so you have to make two entirely separate plans for your life: Plan A and Plan Dead. "I have to make long-term decisions factoring in the possibility of dying, while acknowledging I could very well still be around for a while," Susanne says.
"Yeah, I'd love to come to your New Year's party. If, you know ..."
For Susanne, that meant getting married and co-founding a metastatic breast cancer activist group called MET UP, while Jo Evelyn's life kindly took the planning out of her hands. Against all odds, she went and got herself pregnant. Not everyone was happy. One of her oncologists read her the riot act for failing to have her tubes tied when she first went through chemo, then he doubled down and guilt-tripped her about bringing a child into the world who wouldn't have a mother for long. "But I figured, I'm dying anyway," she says, "Why not bring this life into the world?" So she went off treatment for eight months, had her baby at 37 weeks, and went right back into treatment the next day.
The stats on metastatic lung cancer are even worse, with a five-year survival rate of a mere 4 percent and a median survival time of six months, but Christina remains "cautiously optimistic." She passed the two-year mark last April, possibly because of a rare genetic mutation she has which is known to add longevity to lung cancer patients. It was the least her genes could do. Still, to be safe, she decided that if she was going to die young, she'd live a bit faster -- which meant moving across the country and buying a single-wide trailer in Nashville so she could be rinkside for every home game her beloved Predators play.
Using sudden death overtime to deal with the possibility of actual sudden death seems like as good of a way to cope as any.
By the way, the team was just eliminated from the playoffs in a close seven-game series. For the rest of the fans, that means no more hockey until next year. Imagine how much more, uh, final that last game had to have seemed to Christina. Everything you do -- even the most mundane, everyday bullshit -- could be the last time you do it.
People With Terminal Cancer Are Often Ignored By Both Charities And Researchers
One reason it's hard to say how long our sources have is that science treats metastatic cancer patients like a lost cause, a case of throwing good money after bad. Less than 0.5 percent of National Cancer Institute grants in the previous 30 years went to studies on metastatic cancer because, in Jo Evelyn's opinion, "We're all going to die, so they kind of write us off."
"Sorry, but these ribbons and gel bracelets aren't going to sell themselves."
Instead, most of the money is earmarked for prevention and early detection, which are still humanity's best weapons against cancer, but little comfort to those who, you know, already have it. An estimated 30 percent of breast cancers will become metastatic, including some that have been caught early and treated. Although current screening procedures have greatly reduced the odds of death for Stage I patients, they haven't done a damn thing to reduce the number of patients who are already too far along by the time they get diagnosed. Those patients get little more than a "Tough shit, have a ribbon." Many cancer charities have determined that, dollar-for-dollar, this is the most effective way to focus their efforts, but screening will never catch everyone, and as Jo Evelyn points out, "They don't even know what causes cancer to metastasize ..."
And then there's the fact that when it comes to the big charities, research of any kind often takes a backseat to outreach, informational campaigns, and those colored ribbons. Last year, nonprofit juggernaut Susan G. Komen -- the largest breast cancer organization in the U.S. -- donated only 16.5 percent of the $250 million it raised to research. Keep in mind that this is the group which supposedly works "for the cure." They're also notorious for not letting late-stage breast cancer sufferers speak at feel-good fundraising events (and if they do, you can count on them to downplay the seriousness of their condition).
"She's currently under treatment for owies caused by a Stage IV boo-boo ..."
That right there is the bizarre paradox of being in this situation. Everyone plays up how deadly cancer is in order to drum up awareness and funding. But if you're one of those people who actually have a terminal diagnosis, nobody wants to hear from you because it's too goddamned depressing.
And, in fact ...
You're Expected To Play The Part Of The Inspirational Hero
It's to the point where members of the metastatic club can feel like personas non grata in what is supposed to be a big pink tent. "In all-stages breast cancer support groups, many people with Stage IV are told that maybe they shouldn't talk about metastatic disease or share their story, because it's 'scary' to early-stagers who want to think they 'beat' cancer," Susanne says. "We're dying and being told to be quiet about it because it doesn't fit in with the propaganda."
Susanne also resents that in mainstream culture, cancer has mutated into a kind of mystical, spiritually cleansing experience -- a personality level-up which gives you valuable "perspective" rather than a rapidly ticking clock. "I get monthly injections in my abdomen with a pretty large needle, and I take it without complaint because it's keeping me alive," she says. "I'm not stronger or braver for it. I'm just trying to live."
"Wow, Mrs. Lynn. You did amazing with that pap smear."
Oncologist Dr. Rob Rutledge recognizes this phenomena and refers to it as "the cancer hero" or "the person that's going to beat this cancer, the person who gets up at 5 a.m. and runs 10 miles and then meditates for three hours." He says, "The problem with the cancer hero, from my perspective, is that you can miss out on your relationships, on connecting with people -- with your priorities."
But refusing to play the cancer hero can strain your relationships as well. "I've lost family members over my openness about my disease because they think I'm negative," Jo Evelyn says. "Just the other day, my neighbor was trying to tell me I shouldn't speak aloud that I have terminal cancer." In other words, "Could you please stop dying so much? It's rude."
People Assume You Did Something To Deserve It
Christina hasn't felt censured for being brutally honest about her cancer, probably because there's an entirely different awareness culture at play. "I think lung cancer colors are white and clear -- way less cute and marketable," she says (and harder to sexualize). What she does get are people assuming she deserves it.
"Whenever someone finds out I have Stage IV lung cancer, one of the very first questions they ask is if I was or am a smoker," as if they're "trying to do some detective work to see if I brought this disease on myself ... Everyone is always shocked to learn that I've never touched a cigarette, the hardest drugs I'd done was ibuprofen, and I didn't even have my first alcoholic drink until I was 21."
"Wait, you didn't have sex before marriage, did you?"
In fact, as many as 20 percent of lung cancer patients are nonsmokers, but regardless, maybe the first thing you do when someone tells you they're dying shouldn't be to turn into Captain Hindsight. "That's what you get for letting your 14-year-old self get hooked on one of the most addictive substances known to mankind! Now let me finish my breakfast of tequila and chicken wings in peace."
Breast cancer patients aren't immune to this either, as many of the risk factors -- which include drinking, being overweight, and not having children -- are frowned upon by certain parts of society. But Jo Evelyn can count off a number of teetotaling, upbeat, vegan friends she lost to cancer. Meanwhile, "I smoke a pack of cigarettes a day," she says. "I drink on occasion, I drink two liters of Coke a day, and I'm still here five years later. Riddle me that."
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