Nearly two years ago I was diagnosed with a rare form of Acute Myeloid Leukemia—so rare, in fact, the doctors were not one-hundred percent certain with their diagnosis until it returned the second time. During most of my first rounds of treatment I had insurance through my place of employment—that is, until my six-month disability period expired, and I was fired.

My option was COBRA, an entirely overpriced insurance that would have left my husband and me with nothing on which to live. I was able to receive almost full financial assistance through the hospital where I was receiving treatment, and when I was declared in remission, we managed to squeeze in the tiny slot of the Affordable Care Act coverage that was actually affordable—mainly so my husband would have something “just in case.”

After a few months of remission, I learned that the disease had returned. My doctor gently informed me that I would have to undergo radiation, which was to prepare me for an allogeneic stem cell transplant, which is when the patient receives stem cells from a matched donor (as opposed to an autologous STC, where one’s own cells are used). However, due to sheer cost, the hospital’s financial assistance could not cover the STC—an estimate provided by the Leukemia and Lymphoma Society for an allogeneic STC is $500,000. My only options were to find affordable insurance in the Marketplace or to apply for Medicaid.

We did our research and weighed the pros and cons alongside our specific circumstances. While I had lived paycheck to paycheck throughout my professional career, my husband had managed to put away a significant “nest egg” while working during and after graduate school—but it was a drop in the bucket compared to the expense of the transplant I needed.

When we married, we acted as if his funds did not exist and lived off of what we made monthly. However, suddenly those funds for which he had worked and saved so diligently were keeping me from obtaining Medicaid, which we realized was the only viable option for my specific needs.  In order to qualify for Medicaid as a married couple, though I was the only one applying, we had to meet certain income limits as well as a spenddown before I could receive coverage.  

Since we could only have necessary assets, we had to provide copious amounts of documentation to prove we were under the financial need limit (i.e. one place to live, whether rented or owned, evidence of total income/assets under $3,000—less for us because we kept a second car, documentation for all bank accounts dating back three months, pay stubs, taxes, etc.).  They even ask on the application how much cash you have in your wallet.

My husband’s savings, along with our monthly income, would not cover long-term insurance premiums, co-pays, and meet required deductibles before our resources would run out, leaving us unable to cover basic living expenses—essentially all the reasons we had to turn down COBRA.  I felt angry, indignant, and sad that something totally unrelated to any of my own hard work was now in jeopardy because I had a life-threatening disease. We spoke with the Medicaid experts at the hospital, spent countless hours discussing and seeking wisdom from others, and finally made our decision. We would strategically and legally get rid of the money my husband had carefully set aside in order to save my life.

They even ask on the application how much cash you have in your wallet.
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Never had I imagined that spending money could be so stressful. There are countless stipulations of how you can and cannot dispose of your income, how many cars you’re allowed to have and at what values, and special boxes to check for earmarked monies. For instance, I was allowed to open a special “Burial Fund” account at my bank with $3,500 per person that is untouchable until after I am off Medicaid. We could, and did, pay a year’s worth of rent on our apartment. Then, we made sure our car and rental insurance was paid as far in advance as permitted by the insurance company.  However, we were not allowed to give or sell one of our vehicles to a family member for the duration of my time on Medicaid. We were also warned against giving away money when we considered donating funds to a non-profit cause, as it might look suspicious and could complicate the approval process.

The kicker was that, between the two of us, the government stated we could have one car and $3,000 total, in all assets. However, if we kept both of our cars, the one of lesser value would count against the $3,000 (an antiquated policy that ignores how many people are in two-job homes, requiring transportation for each). We both owned our old cars outright, but we decided to sell the car that got worse gas mileage and upgrade for the sake of my daily transportation comfort after my procedure (1.5 hours round-trip), since it wouldn’t count against us–part of strategic spending. After attempting to sell my car, we decided that based on its low worth in the Medicaid system, but personal value when I was again able to drive, we would keep it and take the financial cut. It was the best decision for us, because after 4-5 months I was again able to start driving short distances. But, it means we have to watch our bank account with a hawk eye.

The stress of making sure every detail was correct was excruciating. Nine months later, it is still a constant stress in our life. I worry what someone at the Medicaid office might say if I deposit a birthday check for $50. I anticipate the review every six months, knowing I have done everything I can, but am still concerned they will find something amiss that will cost me my coverage and therefore my ability to receive necessary treatments.

We were also warned against giving away money when we considered donating funds to a non-profit cause, as it might look suspicious and could complicate the approval process.
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The thing is, I know my story is a pretty good one compared to others. Like most people, I am on social media. I am familiar with people who are on welfare and Medicaid for many reasons. I hear comments people make about those who are truly less fortunate (I do not count myself in that category—my situation could be so much worse). The memes that are posted stating who should and should not qualify for assistance are appalling. The judgement cast by comfortable people who think “if I can do it, so can they” is sickening. The belief so many people have, that it is an easy system off of which people want to leech, is pure propaganda pushed by the greedy elite onto the masses for their own agendas.

Contrary to what many want to believe, my experience doesn’t show me people excitedly lining up to jump through rolls of red tape in order to receive state assistance. It is a painfully long and even degrading process. Humans are treated as a checklist and their personal experiences mean very little, if anything, to the person processing their file. When it takes so much effort to get on welfare (of any kind), is it little wonder that people are loath to get off before they know they can certainly survive without it? A single mother with children to feed and insure, working a job that barely covers rent and utilities, all without benefits will need help. A young couple who are struggling, while working full-time, to make ends meet because their job doesn’t actually pay a living wage may have to lower their pride and apply for food stamps.

These are just a few situations of thousands where the many who claim we need to “help our own first” want to turn a blind eye rather than actually seeing their tax dollars do good.

Personally, I have to consider various factors prior to getting my next job. I cannot wait to get back to work, but I am still officially disabled. I need Medicaid while I continue treatment and recovery. Before I can come off of Medicaid, I have to secure a position with benefits, a salary that will allow me to pay out of pocket fees until I’ve hit my insurance deductible, and the security that if I don’t qualify for much financial assistance, I’ll still be able to get the healthcare I need as a cancer survivor.

The belief so many people have, that it is an easy system off of which people want to leech, is pure propaganda pushed by the greedy elite onto the masses for their own agendas.
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I don’t fit the “stereotypical” role of a welfare recipient. I am a professional, young adult who was diagnosed with a deadly disease and has had to make painfully stressful decisions in order to give myself the best shot at living. But because I don’t fit the bill, I can use the general public’s false assumptions to expose the fallacy of their definition of poverty, what material possessions someone receiving government assistance can have, and what their lifestyle can look like.  

For instance, we drive a used Prius and an old Civic. We shop at Aldi. We use iPhones we bought before my diagnosis (over two years old) and maintain them well. I strive to make my home cozy and a place where my husband and I can work and relax, since we are here practically 24/7. But many would want us to be car-less or in a junker, using a flip phone (nothing against those), and living in a dilapidated house if they knew I was receiving Medicaid.

When I go into the doctor’s office or call my case worker at social services, I cannot help but feel like I’m viewed as slightly less worthy simply because I need help from “the system.” I speak extra clearly and efficiently to communicate that I am aware of the process and want to know what they need me to do. I refuse to be one more person they think they can railroad over because of a complex and confusing system. They will acknowledge my humanity.

Our society wants to see the poor look impoverished, and if they don’t, society lacks the desire and drive to help. After all, if you don’t look pathetic, how can they judge you? The “older” generations cannot comprehend that holding a full-time job is often not enough in the current economy and job market. Thousands of college graduates wind up serving you your morning latte, and I can guarantee that, for most, that is not their passion. Families where one adult is a caregiver and the other is disabled face losing their food stamps when their teenage, but not yet adult, children get high school jobs—like society says they should. The state counts that as household income, even though most families would consider that simple spending cash, not grocery money.

The system is flawed.  Currently, the Trump administration wants to cut assistance to “the three big entitlement programs,” as Senator Mitch McConnell stated in an interview with Bloomberg, as a solution to lowering the national debt.  This comes on the heels of approval of a $675 billion budget for the Department of Defense—only furthering unending, pointless, greed-driven wars, death, and destruction.

We say we want to help the poor in our nation, but do we really? The proof is in the policies—policies that oppress, stress, and even kill.

Although cancer patients already have enough on our plate, we are tasked with the labor of managing other people’s emotions about our disease.

flickr/christina rutz

On the pilot of the CW’s new feel-good dramedy, Life Sentence, a young woman with terminal cancer, Stella (the lithe, doe-eyed Lucy Hale) picks out a cake for her own funeral. Later in the episode, the cake is repurposed for a celebration, because Stella finds out that her cancer has been miraculously cured. Instead of a projected six months left to live, she now will now enjoy a normal lifespan. In typical Hollywood fashion, a reevaluation of her priorities and relationships ensues.

Let me tell you about someone who did not luck out like Stella did.

Candace* a mother in her mid-thirties, was diagnosed with aggressive breast cancer when she was young, like me. Along with her friends and family, she created a Facebook page, “Candace Crushes Cancer,” to update others on her medical journey, as soon as she realized how serious her case was. It happened quickly. Metastatic lesions invaded her hipbone, then ate away at her liver, and finally appeared in multiple spots in her brain. Terminal. She tried medication after medication — harsh chemotherapy regimens that sapped her energy — and attempted to enroll in clinical trials for experimental drugs. She rapidly ran out of options as her blood counts tanked. Candace posted that she wasn’t ready to die. She wanted to fight. It was October, but her doctors cautioned that she probably wouldn’t see Christmas. I don’t need to tell you what happened next, but, to put it crudely: Cancer Crushed Candace. In the final photos from just before she entered hospice care, she was bald, weakened, unrecognizable. She left behind a partner and four young children.

To The ‘Cosmopolitan’ Editors Who Offered Cancer As Diet Advice

This is unfortunately the real outcome of almost all terminal cancer cases, in 2018. Early stage patients have a very good shot at curative interventions, remission, and long life spans, but for many of us — those with cancer that hides out for years before making itself known, or is repeatedly misdiagnosed, or mutates into a treatment-resistant subtype, or simply spreads very quickly — it’s too late for a miracle. By definition, the cancer will win, and not the long-suffering patient, unless they get hit by a bus first.

Fantasies that tell us otherwise are dangerous and insulting, and they don’t only come from Hollywood. The idea of the “miracle cure” represents a conglomeration of media mythmaking, mainstream religious tropes, New Age spirituality, pseudoscientific quackery, and good old-fashioned commercialism. It’s based on the imperatives of hope and optimism that pervade our conversations about illness and disability, to the detriment of patients who grow weary from having to perform a “positive attitude” about experiences that resemble physical torture.

It’s a grave offense to be fatalistic in the face of cancer.

It’s a grave offense to be fatalistic in the face of cancer. When you get sick, the trite messages found on embroidered pillows, pastel Instagram graphics, and t-shirt slogans become directives for how to approach your illness the right way. You are somehow supposed to “expect miracles,” while watching fellow patients waste away, drop dead, and orphan their children. You notice that sympathy is reserved for the most upbeat survivors, and that fear, anger, and especially candid resignation make other people deeply uncomfortable. Although patients already have enough on our plate, we are also tasked with the labor of managing other people’s emotions about our own disease. I discovered early on that presenting as cheerful and hopeful yielded more support from strangers, acquaintances, and caregivers, while being honest about my fears left others unsure of how to react, or eager to dismiss my feelings as too “morbid.”

My friends and family, understandably, don’t want to think about my death. But I do. In fact, it’s the only real way that I’m able to process what has happened to me, and what is likely to happen in the future. I have to confront it, to stare it in the face. The problem is, because of social taboos, I am left to do this daunting work on my own, tossing and turning in the dark each night imagining the assortment of painful ways my body will one day shut down. It’s a very lonely reckoning. The silencing of “negativity” is a recipe for patient isolation.

The Cherry Blossoms Tattoo Where My Breast Cancer Scar Was

The reality is, my cancer doesn’t care how I feel about it, and while a positive attitude may help some people get through the day, it cannot actually stop one’s illness from progressing. “If you visualize your body receiving a cure, a cure will manifest,” a well-intentioned nurse told me on the day I was diagnosed, as if the “Law of Attraction” could be applied to the genetic mutation that caused my cancer. As if the rogue cells in my body could possibly know how much I wished for them to stop multiplying, and then simply bend to my will.

The most visible voice of dissent in this tyranny of “good vibes only” has been journalist Barbara Ehrenreich, whose work critiques the “sugar-coating” of cancer as a way of burying a grim reality “under a cosmetic layer of cheer.” Sadly, little has changed in the decade since Ehrenreich wrote about her own experience navigating a cancer diagnosis in a culture of positivity so relentless that it borders on delusional. After all, just last year, a company invented a high tech handheld mirror for cancer patients that only reveals your reflection if you smile. Otherwise, the implication is, you might as well not exist. You are nothing without compulsory optimism.

It’s no coincidence that “hopeful” people are more likely to spend money chasing miracles, as the line between blind optimism and gullibility can be blurry. Ehrenreich and others have written about the pink ribbon symbol as a crass corporate marketing strategy, but the problem goes beyond breast cancer, and has infiltrated the current wellness movement. Companies that sell unproven homoeopathic remedies in the forms of vitamin supplements, juices, essential oils, cannabis products, healing crystals, and other pseudoscientific modalities are banking on the fact that sick people will try anything for a potential cure. When “alternative” doctors peddle special diet programs and alkaline treatments, they anticipate that our desperation for a miracle will override our critical thinking skills and better judgment, and optimism is warped into something actively harmful.

The Path Of Living With Chronic Illness

The media plays into the miracle narrative with fantasy shows like Life Sentence. In episode three, we learn that Stella was cured because of her participation in an experimental clinical trial. While mainstream Western medicine certainly has a better track record compared to alternative therapies, clinical trials are notorious for disappointing results when it comes to curing cancer. Too many terminal patients are given false hope when they enroll in these studies expecting recovery, as new cancer drugs typically only prolong life by a few extra months rather than years. Life Sentence perpetuates the tendency to showcase medical anomalies rather than the average patient, whose journey is much more of a bummer.

When covering real-life cases of cancer, the media is often guilty of using what disability activists call “inspiration porn.” Sometimes, these are stories about the rare statistical outliers who beat the odds, framed to make it seem like they did so by virtue of impressive internal fortitude rather than sheer luck. (The message: if these model patients can cheat death, everyone else must be doing something wrong.) Other times, inspiration porn presents buoyant dying patients as examples to show healthy, able-bodied people how to live meaningfully — “as if each day is your last.” But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health. We shouldn’t be trotted out as motivational teaching tools to help everyone else put their own banal problems into perspective.

But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health.

In the vast majority of cases, terminal cancer patients do not make sudden miraculous recoveries, no matter how much they fight, rally, love their children, and don’t want to leave their families. No matter if they travel outside of the country for costly alternative treatments, or eat apricot pits or vape cannabis oil. They still die. They are prayed for, sometimes by hundreds of loved ones. They die anyway. If my own cancer metastasizes to my bones or organs before a cure is found, I will die, anyway.

I had to confront this horrific reality at thirty-one years old, and integrate it into how I understood the world. Now it’s everyone else’s turn. But it means facing some distressing truths about death, disease, and our sense of justice. First: the fact that humans are mortal, and sometimes we die too young, for no good reason, and by no fault of our own. (This clashes with several adages about God working in mysterious ways, never making mistakes or giving us more than we can handle. It also contradicts the widespread belief that we all ultimately get what we “deserve.”) Second: cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress. It takes time — years if not decades — for the latest laboratory discoveries to jump from petri dishes to mice to human subjects, so when you read about a promising new finding, remember that it won’t actually help the people who are living with/dying from terminal cancer today.

I had to confront this horrific reality at thirty-one years old, and integrate it into how I understood the world. Now it’s everyone else’s turn.

And third, medical miracles — to the extent they exist at all — are much more likely to happen against the backdrop of care that is affordable and accessible to everyone, something we don’t yet have in the contemporary United States. My chemotherapy treatments were about $20k each, and there were six of them. One night recovering in the hospital was $75k. I am lucky to have a robust health insurance plan (thanks, Obamacare) but I still needed to crowdfund for the various expenses that weren’t covered. In my cancer support groups, fellow patients with no insurance, or ones who live in states that did not expand Medicaid as part of the ACA, are on the hook for thousands of dollars they don’t have, during a time when they can’t actually go to work and earn income. The financial stress takes an emotional toll. I imagine it is easier to stay positive when you don’t have to worry about going bankrupt.

If there is anything at all to be hopeful about, it’s that the culture of toxic positivity might one day shift. The fact that “thoughts and prayers” are now recognized by many young Americans to be an insufficient way of addressing gun violence suggests we may be amenable to reevaluating our stubborn magical thinking in other areas. I sure hope I’ll be alive to see this happen.

*The name has been changed to out of respect for the privacy of her family

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]]> https://theestablishment.co/the-problem-with-cancer-miracles-268266250649/ Mon, 02 Apr 2018 21:24:23 +0000 https://theestablishment.co/?p=1592 Read more]]> Although cancer patients already have enough on our plate, we are tasked with the labor of managing other people’s emotions about our disease.

On the pilot of the CW’s new feel-good dramedy, Life Sentence, a young woman with terminal cancer, Stella (the lithe, doe-eyed Lucy Hale) picks out a cake for her own funeral. Later in the episode, the cake is repurposed for a celebration, because Stella finds out that her cancer has been miraculously cured. Instead of a projected six months left to live, she now will now enjoy a normal lifespan. In typical Hollywood fashion, a reevaluation of her priorities and relationships ensues.

Let me tell you about someone who did not luck out like Stella did.

Candace* a mother in her mid-thirties, was diagnosed with aggressive breast cancer when she was young, like me. Along with her friends and family, she created a Facebook page, “Candace Crushes Cancer,” to update others on her medical journey, as soon as she realized how serious her case was. It happened quickly. Metastatic lesions invaded her hipbone, then ate away at her liver, and finally appeared in multiple spots in her brain. Terminal. She tried medication after medication — harsh chemotherapy regimens that sapped her energy — and attempted to enroll in clinical trials for experimental drugs. She rapidly ran out of options as her blood counts tanked. Candace posted that she wasn’t ready to die. She wanted to fight. It was October, but her doctors cautioned that she probably wouldn’t see Christmas. I don’t need to tell you what happened next, but, to put it crudely: Cancer Crushed Candace. In the final photos from just before she entered hospice care, she was bald, weakened, unrecognizable. She left behind a partner and four young children.

To The ‘Cosmopolitan’ Editors Who Offered Cancer As Diet Advice
theestablishment.co

This is unfortunately the real outcome of almost all terminal cancer cases, in 2018. Early stage patients have a very good shot at curative interventions, remission, and long life spans, but for many of us — those with cancer that hides out for years before making itself known, or is repeatedly misdiagnosed, or mutates into a treatment-resistant subtype, or simply spreads very quickly — it’s too late for a miracle. By definition, the cancer will win, and not the long-suffering patient, unless they get hit by a bus first.

Fantasies that tell us otherwise are dangerous and insulting, and they don’t only come from Hollywood. The idea of the “miracle cure” represents a conglomeration of media mythmaking, mainstream religious tropes, New Age spirituality, pseudoscientific quackery, and good old-fashioned commercialism. It’s based on the imperatives of hope and optimism that pervade our conversations about illness and disability, to the detriment of patients who grow weary from having to perform a “positive attitude” about experiences that resemble physical torture.

It’s a grave offense to be fatalistic in the face of cancer.
Click To Tweet

It’s a grave offense to be fatalistic in the face of cancer. When you get sick, the trite messages found on embroidered pillows, pastel Instagram graphics, and t-shirt slogans become directives for how to approach your illness the right way. You are somehow supposed to “expect miracles,” while watching fellow patients waste away, drop dead, and orphan their children. You notice that sympathy is reserved for the most upbeat survivors, and that fear, anger, and especially candid resignation make other people deeply uncomfortable. Although patients already have enough on our plate, we are also tasked with the labor of managing other people’s emotions about our own disease. I discovered early on that presenting as cheerful and hopeful yielded more support from strangers, acquaintances, and caregivers, while being honest about my fears left others unsure of how to react, or eager to dismiss my feelings as too “morbid.”

My friends and family, understandably, don’t want to think about my death. But I do. In fact, it’s the only real way that I’m able to process what has happened to me, and what is likely to happen in the future. I have to confront it, to stare it in the face. The problem is, because of social taboos, I am left to do this daunting work on my own, tossing and turning in the dark each night imagining the assortment of painful ways my body will one day shut down. It’s a very lonely reckoning. The silencing of “negativity” is a recipe for patient isolation.

The Cherry Blossoms Tattoo Where My Breast Cancer Scar Was
theestablishment.co

The reality is, my cancer doesn’t care how I feel about it, and while a positive attitude may help some people get through the day, it cannot actually stop one’s illness from progressing. “If you visualize your body receiving a cure, a cure will manifest,” a well-intentioned nurse told me on the day I was diagnosed, as if the “Law of Attraction” could be applied to the genetic mutation that caused my cancer. As if the rogue cells in my body could possibly know how much I wished for them to stop multiplying, and then simply bend to my will.

The most visible voice of dissent in this tyranny of “good vibes only” has been journalist Barbara Ehrenreich, whose work critiques the “sugar-coating” of cancer as a way of burying a grim reality “under a cosmetic layer of cheer.” Sadly, little has changed in the decade since Ehrenreich wrote about her own experience navigating a cancer diagnosis in a culture of positivity so relentless that it borders on delusional. After all, just last year, a company invented a high tech handheld mirror for cancer patients that only reveals your reflection if you smile. Otherwise, the implication is, you might as well not exist. You are nothing without compulsory optimism.

It’s no coincidence that “hopeful” people are more likely to spend money chasing miracles, as the line between blind optimism and gullibility can be blurry. Ehrenreich and others have written about the pink ribbon symbol as a crass corporate marketing strategy, but the problem goes beyond breast cancer, and has infiltrated the current wellness movement. Companies that sell unproven homoeopathic remedies in the forms of vitamin supplements, juices, essential oils, cannabis products, healing crystals, and other pseudoscientific modalities are banking on the fact that sick people will try anything for a potential cure. When “alternative” doctors peddle special diet programs and alkaline treatments, they anticipate that our desperation for a miracle will override our critical thinking skills and better judgment, and optimism is warped into something actively harmful.

The Path Of Living With Chronic Illness
theestablishment.co

The media plays into the miracle narrative with fantasy shows like Life Sentence. In episode three, we learn that Stella was cured because of her participation in an experimental clinical trial. While mainstream Western medicine certainly has a better track record compared to alternative therapies, clinical trials are notorious for disappointing results when it comes to curing cancer. Too many terminal patients are given false hope when they enroll in these studies expecting recovery, as new cancer drugs typically only prolong life by a few extra months rather than years. Life Sentence perpetuates the tendency to showcase medical anomalies rather than the average patient, whose journey is much more of a bummer.

When covering real-life cases of cancer, the media is often guilty of using what disability activists call “inspiration porn.” Sometimes, these are stories about the rare statistical outliers who beat the odds, framed to make it seem like they did so by virtue of impressive internal fortitude rather than sheer luck. (The message: if these model patients can cheat death, everyone else must be doing something wrong.) Other times, inspiration porn presents buoyant dying patients as examples to show healthy, able-bodied people how to live meaningfully — “as if each day is your last.” But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health. We shouldn’t be trotted out as motivational teaching tools to help everyone else put their own banal problems into perspective.

Most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health.
Click To Tweet

In the vast majority of cases, terminal cancer patients do not make sudden miraculous recoveries, no matter how much they fight, rally, love their children, and don’t want to leave their families. No matter if they travel outside of the country for costly alternative treatments, or eat apricot pits or vape cannabis oil. They still die. They are prayed for, sometimes by hundreds of loved ones. They die anyway. If my own cancer metastasizes to my bones or organs before a cure is found, I will die, anyway.

I had to confront this horrific reality at 31 years old, and integrate it into how I understood the world. Now it’s everyone else’s turn. But it means facing some distressing truths about death, disease, and our sense of justice. First: the fact that humans are mortal, and sometimes we die too young, for no good reason, and by no fault of our own. (This clashes with several adages about God working in mysterious ways, never making mistakes or giving us more than we can handle. It also contradicts the widespread belief that we all ultimately get what we “deserve.”) Second: cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress. It takes time — years if not decades — for the latest laboratory discoveries to jump from petri dishes to mice to human subjects, so when you read about a promising new finding, remember that it won’t actually help the people who are living with/dying from terminal cancer today.

Cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress.
Click To Tweet

And third, medical miracles — to the extent they exist at all — are much more likely to happen against the backdrop of care that is affordable and accessible to everyone, something we don’t yet have in the contemporary United States. My chemotherapy treatments were about $20k each, and there were six of them. One night recovering in the hospital was $75k. I am lucky to have a robust health insurance plan (thanks, Obamacare) but I still needed to crowdfund for the various expenses that weren’t covered. In my cancer support groups, fellow patients with no insurance, or ones who live in states that did not expand Medicaid as part of the ACA, are on the hook for thousands of dollars they don’t have, during a time when they can’t actually go to work and earn income. The financial stress takes an emotional toll. I imagine it is easier to stay positive when you don’t have to worry about going bankrupt.

If there is anything at all to be hopeful about, it’s that the culture of toxic positivity might one day shift. The fact that “thoughts and prayers” are now recognized by many young Americans to be an insufficient way of addressing gun violence suggests we may be amenable to reevaluating our stubborn magical thinking in other areas. I sure hope I’ll be alive to see this happen.

*The name has been changed to out of respect for the privacy of her family