Tomorrow, March 26 of 2024 will mark eleven years since my late wife Linda Cudworth passed away. She survived through eight years of ovarian cancer, a Stage IIc diagnosis that proved persistent and aggressive through multiple surgeries, chemotherapy treatments (literally dozens in cycles of 5-8 at a time) and the pursuant side effects ranging from destroyed taste buds to feet and hands numbed by neuropathy so bad she could hardly manage to do the thing she loved most, which was gardening.

Yet persist she did. Long enough to see her son Evan graduate from college and begin work. And nearly long enough to see her daughter Emily graduate as well. It wasn’t an easy period for either of them, working in New York as Evan did at the time, and Emily looking to finish up college at Augustana while her mother’s health declined. Those events and the aftermath affect us all to this day.

Corporate wealth versus public health

But I also want to talk about something I’ve never fully addressed. That is, how the world and its work and healthcare systems treated us from the minute we received that initial diagnosis back in 2005.

At the time, my mother was also already fighting lymphoma with oral chemotherapy because she wanted to stay healthy enough to care for my father Stewart, who had a stroke in 2003 and never really recovered. His apraxia and aphasia stole his speech, and paralysis on his right side took away many of his other activities.

That made me the primary caregiver for both of my parents. So when the cancer diagnosis came along for my wife we were already dealing with considerable issues related to insurance and caregiving. That November, my mother was additionally diagnosed with pancreatic cancer. She died after one chemo treatment that produced in her a life-ending stroke.

At the time, our family healthcare plan was administered through my employer the Daily Herald, a newspaper media company. We chose an HMO to save costs, but what that really meant was that our doctor options were limited by our plan. We were balancing our healthcare needs against all the other expenses we faced in life at the time with kids in high school and college.

We were just trying to get along. In the early 2000s we lived on my salary of $75,000-$80,000 a year. I also made an additional $15-20K per year freelancing, often working early mornings and late evenings as a remote freelance creative director and copywriter for an agency I’d later join as an employee. We used my wife’s preschool teaching income of $18K to save up and pay for my son’s college costs at the University of Chicago because our FAFSA was about $16K per year.

The Gold Standard

Linda had surgery in 2005 to remove the remainder of the ovarian tumor that the naive gynecologist had broken during exploratory surgery to check the cyst. That accident revealed the cancer, and it also unleashed millions of cancer cells throughout her abdomen. These implanted on the abdominal wall. We were grateful to find in our HMO a premiere gynecological oncologist named Dr. James Dolan who did investigative surgery to remove cancer. In a post-surgery meeting with me in a closed room, he quietly told me that her abdominal wall “felt like sandpaper” thanks to the cancer cells growing there. “I extracted as much as I could,” he told me.

After that, we proceeded with intravenous chemotherapy to kill as much cancer as we could without killing Linda. Then they recommended a “Gold Standard” tactic of dumping chemo directly into her abdominal cavity through a port in her belly. The nurses actually nudged the port loose with one treatment and the chemo spilled out making a white stain on her skin.

We probably could have sued over that, but our biggest concern was getting through the chemo so that she could return to something resembling a normal life after months and months of her being sick and tired and fed up with the entire debacle.

HMO ills

All the while we wrestled with HMO bills and tried to keep up with our payments. Upon signing up for the HMO, we had to switch family doctors, leaving behind the physician that Linda trusted most. That practice, one that I’d been attending since I was twelve years old, no longer accepted the Blue Cross HMO we’d chosen. It’s a tragic thing when an insurance system takes medical decisions out of people’s hands.

To make matters weirder for me, during same time period my boss at the newspaper decided to conduct a 360-degree review on my performance at the company. Needless to say, I was a bit distracted that year. Thus the review held plenty of criticism. I’d been Administrative Associate of the Year in 2003, so I wasn’t a slouch of any kind. But thanks to the burdens of caregiving for my wife and parents, juggling bills and kids in college, and commuting all over five Chicago suburban counties to run the marketing efforts of six bureau offices, the year 2005 was not easy for me under the circumstances.

Yet despite these pressures, I still managed to grow a literacy project that represented $27M in market value to 375,000 families. My role also involved conducting 200 annual events as well as several dozen awards banquets, symposiums and sales programs for a newspaper with a circulation of 140,000 or so. Amid this flurry of activities, I had some problems, yes. But it also would have helped not to have been put under a 360 degree microscope while dealing with everything going on at the time.

Bigger money

I ultimately left the company in 2007, joining the agency where I’d been freelancing. Linda’s health was by then stabilizing. We felt like it was a good time to make the change given the failing nature of the newspaper industry. The Internet was stealing revenue and kicking the ass of nearly every newspaper in the country. Dozens were going out of business. I’d just won a $1M account for the agency by leading a pitch to a giant men’s clothier chain based out in Richmond, Virginia. My new salary would be $110,000 a year, almost $30,000 more than I’d been making at the newspaper.

But then tragedy struck again. Within a month of starting that new job in the summer of 2007, Linda’s CA-125 numbers began rising. The surgery and chemos she’d endured the previous years were not keeping the cancer at bay. It came back hard and fast that summer. The disappointment of having done the “Gold Standard” and having the cancer come back so fast was too much for Linda. She had a complete emotional breakdown, screaming in anger when we got the call that cancer was back. Her personal affect collapsed. Her parents spent time at our home during the day yet I spent every other hour at work checking on her as needed. My own performance suffered, and before long, the agency elected to fire me.

I get it. Company leadership wants positive, high-performing employees. The boss of that firm once looked at me and complained, “I like you better when you’re smiling.” I was just trying to survive at the time. I’d spent so much time on the phone during those months that I received a $500 cellular phone bill from our cellular provider. I took the bill to a local store and explained our situation. They told me that they’d credit back the entire bill. No charge. Obviously I thanked them profusely.

Back on the job hunt

But I was still out of work. At that point, cancer families have a choice to make, and it’s not pretty. Within a month or so, payments must be made to continue COBRA insurance coverage. That means the patient assumes the total costs of insurance. In our case those costs totaled $2000 a month. That’s a ton of money to pay before even considering monthly bills. So there I was, out of work with just a nest egg of cash available, suddenly thrown to the insurance wolves.

It took months for Linda to emerge from the depressive episode brought on by the emotional collapse. She could only bear to leave the house for short periods, usually with me, or sometimes, with her parents. Even that was tough. Meanwhile, she’d developed a condition called ascites, a swelling of the abdomen due to fluids caused by cancer. One night I walked in to find her lying on her side with the light in her eyes flat and nearly lifeless. I helped her into the car and we rushed to the hospital. The medical techs proceeded to drain several liters of fluid out of her gut. That can only be done a few times as the procedure has risks of causing infection and other problems. We needed to get her back into chemo to kill off the cancer that returned. The rest of 2007 was spent getting those treatments as occasionally her most trusted friends sat with her at the cancer treatment center if I had job interviews or freelance gigs to handle.

Making do

I got to work again by 2008, accepting a lower-paying job nearer to home at an audio-visual company. The salary was just $60,000, about half of what I’d been making at the agency. I took the position because there were some energetic young associates that just started at the company, which planned to launch a student response system for the education market. There was growth potential if that succeeded. Mostly I took the job so that I could be near enough to home to take care of Linda. She was going better again, having survived even more chemo and another surgery, but this time her hair fell out even faster and her hands went numb. She bought wigs and wore gloves to do her gardening.

The bills continued to escalate during that period. The costs of chemo and surgery shot up so high that we could not afford to pay for it all, a total of nearly $100,000 built up. I learned that the hospital where we having treatments done was a non-profit offering financial assistance. To my amazement, they reviewed our financial situation and agreed to pay 90% of all our bills. I sat at home that night crying in thanks. On that subject, I greatly admire wealthy people moved to support healthcare and hospitals. They rightly deserve to have their names on the facilities. Thank you. That’s indeed a beautiful thing that wealthy people do.

Ugly questions and healthcare roulette

That still leaves some ugly questions. Why does our insurance system work like this? It’s clear that no one really knows what’s going on with actual patients and their medical bills. I’ve long been a proponent of a national healthcare system for these reasons. The US should be like so many other countries around the world, investing in the health of its people rather than forcing them to play healthcare roulette.

In this country, real, everyday people feel the ugly brunt and abuses of the for-profit healthcare It’s an ugly process in which insurance companies, healthcare providers, the government, and employers small and large all battle over who should pay for what. All we know is that the costs of health insurance rises year after year. During the eight year reign of President Bush, the costs of health insurance rose by *96% and millions of people remained uninsured.

*Source: Crain’s Chicago Business

Money drains

That leaves people heading for the emergency room if they’re uninsured, driving costs higher and reducing effectiveness of care for everyone. It’s unexcusable that a developed nation such as the United States of America carries on like it does claiming that it offers the ‘best healthcare system in the world.’ Yes, we have many advanced and amazing healthcare opportunities in this country. But what does it mean that our doctors hate it because they’re in debt up to their ears from paying for their medical education, and the cost of insurance for their practices is skyrocketing too. Meanwhile, nurses suffer long hours and hospital systems try to nick every dime out of patients just to stay afloat. Money consistently drains down the sinkhole of the American healthcare system. It’s a national debacle. A shitshow.

To make it all worse, many companies fear having their insurance rates go up every year. This is true for companies small and large. Once the recession hit in 2008, there were many small companies struggling to survive month-to-month while banks refused to offer loans to cover payrolls or operating expenses, much less insurance costs.

By 2010 my job at that little audio-visual company came to an end when the rescue dollars offered by the Obama administration to fund educational technology ran out. “Sorry,” I was told. “We don’t see the same business coming through this year. We have to let you go.”

Well, that was also a lie. I’d researched and landed a former business line with a huge educational supplies company eager to sell our firm’s AV equipment through their national channels. But because that firm competed with the localized dealer network and the Good Old Boy system it relied upon, the company’s President and top salesperson fought the supposed incursion upon their territories.

I’d studied the previous sales reports showing that the education company had once done $600K in business with our firm. With another salesperson I visited the education company, re-opened those sales channels, helped train their people and provide them with marketing materials, and brought in a quick $1M in restored business that year for a firm doing $20M annually.

But our internal audience was not in favor of the change. “Our dealers don’t like their salespeople calling on their schools!” they protested.

“When was the last time any of those dealers actually called on those schools?” we responded.

“Well, they plan to…” was the weak response. We’d learned that the new sales channels threatened their anachronistic methods of doing business.

We might say the same thing about our healthcare insurance industry and its anachronistic corporatized structure. The “old ways” of doing business are clearly not efficient or effective for anyone. The possibility of competition from a national healthcare system to regulate and negotiate prices is too much of a threat to Big Pharma and the likes of United Healthcare and other monopolistic healthcare insurances hogs feeding at the trough of unrestricted data, access and profits from the American population.

No agency at another agency

I searched far and wide for a new job and got a position at an agency forty miles away. During the onboarding process, which was conducted by the wife of the company’s owner, I hesitated filling out the information on the health insurance forms because it would mean revealing my wife’s cancer. I considered not telling the truth, but reasoned that could lead to a lawsuit. So I filled out the paperwork honestly and turned it in, knowing that it might raise red flags in the minds of the couple running the company. From the get-go, I worried about that.

Sure enough, after month I was suddenly shifted to an inane sales position requiring me to drive all over the Chicago area handing out bottles of promotional pepper sauce as a device to land marketing work for the agency. It never worked, and of course, I didn’t land much business. I quietly asked, “Shouldn’t we be using the marketing techniques we teach our clients to market our own firm?” For some reason, that was ignored. Ultimately, they pulled me into a meeting one day and said, “You’re just not cutting it. We have to let you go.”

I resisted and specifically pointed to the fact that I was shifted away from the original responsibilities to engage in a crazy proposition that no one could fulfill. Later that day, I wrote them via email because I’d done my research before leaving and talked to the broker that sold them healthcare. “I can stay on their plan, right?” I asked. He assured me that the law required that I be offered that opportunity. But the company tried offering me a $1500 stipend toward whatever insurance I could find. At that point, I contacted a lawyer friend. I accepted their $1500 offer and also stayed on their insurance until I found a new job.

Bad scaffolding

As I understand it, the entire American healthcare system is built on a scaffolding of bad policy originally constructed as a sort of “incentive” or “benefit” to attract employees. The healthcare system we developed relies on this quasi-capitalistic notion that we should all get health insurance through our employers.

But if supporting and defending capitalism were truly the mission of the American healthcare system, businesses would have nothing to do with health insurance at all. That would eliminate the massive costs and time spent by HR resources negotiating and managing company-sponsored healthcare plans. Our corporately sponsored healthcare system is a fraud. To make matters worse, the politicians responsible for legislating healthcare are in many cases funded by the profit-based companies benefitting from the waste and corruption integral to our system.

The laws governing small companies are vague and frankly, rife with loose language and utter bullshit about what they can and cannot do to hire and fire employees, much less provide access to healthcare insurance. If a company has less than twenty employees, they get a ton of leeway in how they can screw people over. I know that it’s hard to run a company of any size. I’ve seen it firsthand. But I also know that there’s a right way and a wrong way to treat people. I’ve seen that firsthand too.

After I left, one of the employees at the first who knew my situation called to offer condolences. She told me, “Don’t fuck around with these small companies,” she warned. “You need to get a job with a big firm with good insurance.”

A CMO still hiding the Big C

I tried to abide that advice, but the job market was still tough in 2011. I applied and was hired for a position as Chief Marketing Officer at a PR firm. Things went well for a year. I earned a number of national public relations awards for clients large and small, even bringing 2000 people the grand opening of a ReStore.

The company’s owner knew and liked me, yet in the back of my mind I remained cautious because during the interview process she’d openly stated, “The only reason we can offer insurance here is because no one’s had cancer.”

I have a labor law attorney friend whose firm once faced rising insurance costs. His partners were angered by the fact that his wife had a couple surgeries to fix scar tissue related to horseriding injuries. “Your wife is driving up our insurance costs,” they complained. But when the broker from whom they purchased their insurance explained the rising costs, he told them. “It’s not her surgeries making the costs go up. Both of your wive’s are in their child-bearing years. That costs more money to insure.”

The fact of the matter is that virtually no one understands our insurance system in America.

Fortunately, in the case of that little PR agency, I was able to fill out and submit our health insurance forms without sharing them with the office manager or anyone else at the firm. I mailed them directly to the insurance provider. I believe that’s how it’s supposed to work. And don’t HIPPA laws require it in some fashion? Yet many small firms ignore such requirements.

Even with that precaution, I’d soon run afoul of that firm’s insurance fears and other policies related to employment.

A grudge and payback

After traveling to Colorado Springs on a client recruitment trip at an event where large firms met with PR firms like ours, I was accosted by a fellow employee who was angry that the owner had spent $35K to attend. “We won’t get a bonus this year, I bet,” he complained. In turn, I explained that we were trying to up our game and bring in new and larger clients so that we’d all make more money. Instead, he bitterly blamed me for supporting her venture. In fact, he made a practice of complaining about her every time we went to lunch. I didn’t know that his disenchantment would soon cost me directly.

In the spring of 2012, Linda’s cancer came back. This time it would require yet another surgery involving a complicated extraction of cancer from her liver and colon, where it had spread. With the surgery approaching and the need for some time off possible, I considered telling the company about her condition. Yet I feared getting fired if they found out my wife had cancer. I’d been enough nuttiness to know that anything could happen.

As an insurance against my own risks, I worked hard the last two weeks before the scheduled surgery trying to land a big client. I figured that might stand up against any potential costs we might incur if our company’s insurance coverage shot up.

On a Sunday night, a bit anxious to make something happen I’ll admit, I opened up my personal website and posted one of the successful creative campaigns I’d just produced with an in-house designer. I was trying to reach a network of people through my own website that might be able to provide a referral for new clients.

The pressures were getting to me, so I decided that Monday morning to tell the owner and the HR director about my wife’s condition. They expressed complete support for our family. After all, I’d attended every company event and brought some recognition to the firm, including a complete re-write and design of the company’s website. I thought I’d built some loyalty and value. They assured me that I had.

But that afternoon the post of content to my website generated a Google Alert about the client’s name. At that point the disenfranchised employee came to my office with a stern look on his face and said, “You need to take that down right away.” So I did. It had stayed on my website no longer than ten hours. It was highly unlikely anyone even saw that post. But the copy mentioned the client’s name. Technically, I’d committed an error in judgment.

Getting fired is no fun

I walked into work the next morning to be greeted by the owner, whose stern look told me something bad was happening. The entire office was silent as they led me to the company conference room and informed me that I was being fired for breaching the company’s policies on client confidentiality. “That’s weird,” I responded. “They’ve already published that work in a magazine.” They didn’t care, they told me. I’d put the company at risk.

The lawyer they hired sat in the room and read me some legalese. Then I was told to gather my personal effects and leave. If you’ve never been fired from a job, it really is no fun.

That afternoon I contacted my best friend who is a labor law attorney. He gave me some advice to follow for an upcoming hearing on unemployment insurance but he was busy with his full-time job the day I was to have the hearing. It was conducted by a Chicago employment judge. In advance, we were told to exchange relevant materials so I submitted proof that my post had done neither the company or the client any harm. However, I never received the information they were supposed to provide me.

Upon mentioning that to the judge at the start of the hearing, he told me not to speak until spoken to. From there the case was railroaded and I was also blocked from collecting unemployment insurance. In sum, that disgruntled employee had fucked me over in spiteful revenge over my support for the boss’s investment in client recruitment.

Lessons learned

I’ll end this story there, because not long after that debacle my wife’s condition got worse. Her own father died of heart complications in late 2012. Then on December 26 of that year we learned that her cancer had migrated to the brain.

The doctors told us, “That’s not supposed to happen.” But it did. We engaged in brain surgery using radiation. Then they put her on steroids for the swelling. That made her kind of energetically crazy in early 2013. We even had to counsel her to stop teaching preschoolers because her judgment just wasn’t right. That broke her heart. And mine.

When the steroid treatments ended her body mercifully gave out but her mind never did. We’d done our praying and told each other of our mutual love. She died peacefully the evening of March 26 after the hospice team visited her that afternoon.

I’ll admit I was grateful and relieved that she was freed from the misery of the cancer that caused her distress all those eight years. Despite it all she lived as fully as anyone could, planting amazing gardens, raising monarch butterflies from eggs on milkweed leaves, and loving her own children and those she taught with all her heart. She was 55 years old.

But my point in this essay is that I still cannot believe this is the way that human enterprise is supposed to treat those facing illnesses such as cancer. In its broadest sense, society is still primitive, tribal and brutal in its methods of care as far as I can see. Corporations can toss people around at will, it seems. Our healthcare system favors the rich and spits on minorities, women and anyone that fails to fall under “covered categories.” Is there any more inhumane system on earth? Probably so, but we’re supposed to be better than that. Instead, we’ve got greedy fake Christians and their hypocritical political partners claiming to be Pro-Life while constructing death panels based on who can afford to pay for insurance, and who cannot.

Fortunately, there are still many kind and wonderful people who break through the ugly facade of America’s healthcare system to offer great care and financial support. But they fight against a system more concerned with corporate wealth than public health. And that’s the real cancer in America.