Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.

Brenda Denzler

I’m a big fan of the now-defunct television series “The Big Bang Theory.” The show’s premise involves nerdy scientists eventually finding love. Against all odds, three out of the four (male) main characters managed to find, woo, and marry women.

Only poor Raj, a sweet Indian immigrant, failed to find the woman of his dreams. So, he decided to accept an arranged marriage. After a few weeks of tentative courtship, he and Anu seemed to hit it off, so they set a marriage date and continued to get to know each other.

“You’ll just have to trust me!” Anu said angrily, when she found out that Raj had been spying on her with a security surveillance camera he had installed for her.

“How can I trust you?” Raj shouted back, his voice filled with anxiety. “I don’t even know you!”

For some cancer patients, that’s what happens when you’re diagnosed. You’re paired up with a person you don’t even know but whom you must implicitly trust. Most of the time it seems to work out. You get to know each other better, and it’s OK. But sometimes things wind up just like Raj and Anu.

If you’re a patient in a big hospital system, as I was, you’re assigned to an oncologist who specializes in your kind of cancer. You may or may not have much say in choosing your doctor.In my case, I was outright denied that opportunity when I asked for it. I was told other doctors in the clinic weren’t taking on new patients. There would be no changing who I had been assigned to.

I accepted this situation, though not with complete pleasure. It was, if you will, an arranged “medical marriage” between this newly hired doctor who needed to fill his patient roster and a newly diagnosed and terrified patient. I felt disrespected by the hospital and coerced by the cancer — forced by the exigencies of my situation to take whatever (or whoever) I could find and be happy to have treatment.

As the weeks wore on, my doctor, his nurses, and I had our misunderstandings — several of them. Despite my obvious need, I went into cancer treatment just about as terrified of them and what they were proposing to do to me in the name of medicine as I was terrified of the cancer itself. They couldn’t understand this. Their reaction was invariably something like Anu’s: “You’re going to have to trust us.” My reaction to that was invariably something like Raj’s: “Trust you? I don’t even know you!” I also couldn’t help but think, “And you sure don’t know me. You just know my diagnosis!”

If, like me, you’ve had a traumatic childhood medical history that has left you with medical PTSD — viscerally terrified and morbidly distrustful of doctors and hospitals — you’ll understand. If, like me, you had a lifelong intention to reject conventional treatment and use only all-natural, holistic cures if you ever got cancer, you’ll understand. Just my walking into the hospital and agreeing to conventional treatment was an amazingly huge act of trust, whether my doctors knew it or not. And basically, they didn’t. They thought they did … but they didn’t. Not really. I could tell by the way they acted and the things they said.

There are a few relationships in life that are extremely intimate, where you open yourself up to being exceptionally vulnerable. Marriage is a biggie. So is asking someone to save your life when you are sure to die otherwise. Especially when the request entails asking that person into your life in a way that aggressively violates your lifelong sense of who you are and what you believe. My relationship with my oncologist and nurses was more intimate, to me, than sex. In letting — indeed, needing — them to practice their medicine upon me, I was forcibly opening myself up to them in physical, psychological, and even spiritual ways that I could never have imagined before my diagnosis. “Difficult” doesn’t begin to describe how hard this was.

My team never understood the identity-destroying depth of this self-violation I was allowing. For them, it was just a simple — and relatively superficial — matter of “trust” between us. But it was so much more than that. Thus, like Raj and Anu, who broke off their engagement, after months of mutual discontent I asked for (and by that time could get) a new oncologist. The arranged marriage hadn’t worked out. But it might have been saved, if only …

Medical school prepares a person to take care of bodies in all sorts of states of disrepair due to illness or injury. Where it does a poor job, however, is in preparing people to take care of any part of the patient that exists outside of that. The one medical sub-discipline that does focus on the non-physical, psychiatry, is in my opinion too often treated as if it were a babysitter: tasked with dealing with the sometimes thorny bits of the patient’s present and past reality so as to keep those untidy, unruly things out of the oncology wards.

But cancer is a gnarly beast. It messes with your head. If you harbor a traumatic history, a cancer diagnosis can really mess you up. And if you harbor, in particular, a traumatic history involving medical treatment, the situation can quickly get complicated. Rather than passing off such patients to the psychiatrist and wiping their hands of that part of patient care as if it were more or less beside the point of their own work, oncologists need to be joined at the hip to psychiatry, seeing it as a Sherpa that can help them form a truly healing relationship with their patients. Because the past is present, always and in all places. Even in oncology wards.

Cancer is a journey into the peaks and valleys of life that is worthy of a skilled guide. Oncologists, as a part of their profession, have chosen to make this sacred journey through the highs and lows of having cancer every day. Their patients are forced to make it. For at least a time. In one way or another —however they can. The medical marriage within which that journey unfolds is a most intimate thing. Small wonder that a guide can be needed to help it work out well to support and preserve the tenuous bonds of trust between a terrified patient and a busy oncologist.

Trust is a medicine with powers to heal. The best answer to the patient’s, “Trust you? I don’t even know you!” and its corollary, “You don’t know me, either!” is increasing the knowing. For some patients, that’s going to have to be on a deeper level than an oncologist might ever have had to go. It will take time they don’t have, emotional energy they probably can’t spare, and lead them into landscapes of sickness and health they’ve probably never even imagined. But it is vital to the medical care that they’re trying to provide, and the patient is trying hard to accept. It is vital to the creation of trust, which is, at its heart, a most intimate thing.

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The relationship that develops between a cancer patient and their oncology team is a most intimate thing. 

Cancer Treatment Can Be Like an Arranged ‘Medical Marriage’

I consider myself one of the lucky ones. When I was diagnosed with inflammatory breast cancer in 2009, I had a 40% to 50% chance of surviving five years. Now, 11 years later, not only am I alive, but as far as we know, I'm also cancer-free. So, now I’m lucky in more ways than one.

But it has taken me a lot of time to feel this lucky. And there have been many occasions, as I've lived into my “new normal,” where I have feared that my luck had run out. How many occasions, you ask?

I'm a born librarian — a keeper of books and a maker of records. In fact, I've kept a record of all the scans I've had since my cancer diagnosis. In part, it's been a way of reminding myself about all the extra radiation exposure I'm getting with scans. Early-on I was very aware of how that exposure added to my risk going forward, so I asked a friend who is a radiation oncologist about it. He said that, “given the amount of radiation you had for your treatment, the amount of radiation you're getting in a CT scan is like a drop of water added to the ocean.” At that point, I quit worrying so much.

But, like I said, I'm a born record-keeper. So, I got out my notepad and sharpened my No. 2 pencil and set to work creating my imaging log. The other day, I took a good look at my track record. It's kind of a grade card, if you will, of my survivorship years.

I totaled it up and in the last 11 years, I've had 71 scans. Not all have required radiation exposure, but many have. Eighteen were routine, including my yearly mammogram and periodic DEXA scans to check bone density. Thirty-five of them have been for things not related to cancer. I note that this set of scans includes those needed to check on some symptoms that may be long-term side effects of my treatments — like those for heart issues or for a severely faltering thyroid gland.

But 21 of those scans are a record of how I've done with the anxieties of survivorship. Those scans were a result of symptoms I had where I was afraid my luck had run out. In 11 years, that averages out to about one scan every six months. However, only six of the recurrence scares happened in the last six years. The other 15 scares happened in those mythical first five years, when we all anxiously wait to see what side of the percentage divide we're going to fall into after our treatments.

I know that this is a lot of information to be throwing out there, but I figured I’d use these numbers to tell you that the anxious waiting for the other shoe to drop gets better. Or, I could show you in concrete terms how it has worked for me. And believe me, I'm a real scaredy-cat. I'm not one of those who suffers in silence for months before asking for medical intervention. Just ask my poor, beleaguered doctors!

What I usually realized, after yet another scare had been put to rest with a scan, was that the symptoms I had were a part of learning what was OK and what was abnormal in the "new normal" of my body. Some of the symptoms were just the result of normal aging (though I think that is a suspect category for anyone who has been through much in the way of cancer treatment; the cure ages us in unnatural ways). Some of them were "incidental-omas", or symptomless signs of possible recurrence found in the process of chasing down other symptoms, like the "mass" on my liver that was discovered and then later disavowed when checking into whether I'd had a heart attack.

I've been lucky. No doubt about it. Yet here, at the start of my 12th year of cancer-free (as far as we know) survivorship, the awful awareness that the other shoe could drop at any moment, is just as real as it ever was. In some ways, these feelings are heightened by my success. How much longer can my good luck last? In other ways, they are moderated by more than a decade of experience with hoping for the best yet fearing the worst (and being proven wrong every time).

I think the difference between then and now is that I know my new, post-treatment body better and how it feels. I've settled into it, a bit. Plus, I've been proven wrong about recurrence so often that I can chuckle about all of it a little more easily than I could five or 10 years ago. I know I'm probably wrong, but … then I smile, feeling a little sheepish at questioning my luck yet again, after all this time.

Still, the awareness that “as far as we know” could change in one blinding moment still haunts me. I have developed blood clotting issues again that I've only had once before, in association with my cancer diagnosis. This time, it's persistent. We can't get rid of it, so now I'm on blood thinners for the rest of my life. Clotting problems can be an early warning sign of cancer. On top of that, I recently happened to discover that my eosinophils are bouncing around in the very high-normal to mildly bad range, after a lifetime of being solidly in the middle or low-end of the normal range. Eosinophilia can be a sign of cancer.

I know I'm probably wrong, but right now I can only hope and pray that a year or two from now, I'll be chuckling again. As far as we know, I will.

An 11-year survivor of inflammatory breast cancer details how even though she considers herself one of the lucky ones, the awareness that “as far as we know” could change in one blinding moment still haunts her.
 

Waiting for the Other Shoe to Drop is Haunting

You’d think that in a field like medicine, which prides itself on being evidence-based, fads and fancies wouldn’t hold much sway. Yet in my experience as a cancer patient, that just isn’t so. Take, for instance, the tendency of doctors and researchers to say that cancer is now a “chronic” condition. “It isn’t a death sentence anymore,” they say. “More and more people are living longer.”

Note what they are not saying. They are not saying that, “More and more people are being cured.” They’re saying, “More and more people are living longer.” There’s a difference between those two, but it’s a difference that some people seem to wish to slide right past.

Note, too, that they do not usually specify how long “longer” is. As my oncologist friend J-Rad told me, a person with, say, lung cancer who only had six months to live 10 years ago may now have two years to live. For inflammatory breast cancer (IBC), not quite half of us are still alive five years after diagnosis. It used to be that we died within a year or two. For metastatic breast cancer (MBC), there’s now a two- to three-year median survival time. This is the “living longer” that they are talking about.

Patients with cancer are being kept alive for a few more months or a few more years than they used to in years past, ergo to some doctors it seems more like treating a longer-term illness than treating a disease that will soon enough, nevertheless, be fatal.

Now, this is an improvement. There’s no doubt about it. We should be happy for this. It’s a blessing for physicians and researchers to have given cancer patients a bit more time on earth before the end comes. A bit more time to savor life, to achieve goals, to set their affairs in order. And we need to find honest ways to celebrate these achievements that have been won by the hard work of thousands of bench scientists and clinical oncologists.

But that doesn’t mean they have made cancer into a chronic condition, yet. You can call a pig a horse and brag about your fine racing stable all you want, but at the end of the day, what you have is still a pig.

Famed oncologist Siddhartha Mukherjee does not believe this. He is all for re-naming the pig. Mukherjee’s excellent book, “

The Emperor of All Maladies: A Biography of Cancer”

, ends with this thought: “with cancer, … no simple, universal, or definitive cure is in sight — and is never likely to be ...” Ergo, he suggests that we may as well focus our efforts on “prolonging life rather than eliminating death. This War on Cancer may best be ‘won’ by redefining victory.”

And that is what oncologists have been busy doing in the last decade or so. Redefining victory. Moving the goalposts. Calling something that still kills you long before your time, “chronic.” Celebrating things that are only really small victories, as major victories. Calling a pig a horse, and bragging about their fine breeding stock.

Trouble is, they’ve been redefining it without a lot of input from the patients who are the ones living with the disease. “Chronic” may be a doctor’s view of what is happening, but it is far, far from what many (if not most) cancer patients experience. In a world that also touts “patient-centered medicine,” this is a serious oversight.

I don’t know about you, but to me something that is “chronic” is something that may impact your life to some extent, if you take care of it and mind it well, but it’s not likely going to kill you — and it is certainly not likely to kill you sooner rather than later. Like my parents, who have lived for decades with Type 2 diabetes. My mom died a few years ago with it, but not remotely 

 of it. My dad, nearly 90 years old, is still plugging along with it.

The health industry uses a different definition of “chronic.” To them, chronic has nothing to do with whether or not the condition is going to kill you. Whether it will kill you and how soon it will do so are totally separate issues. Instead, the definition of chronic is just something that is long-lasting, persistent or recurrent.

I have had migraines for about 30 years now. They have been a long-lasting, recurrent issue. That is chronic.

I have a little touch of asthma. It gets better or worse, usually depending on air quality. It is persistent. But it is manageable, and while it could flare up into a true breathing crisis and kill me, chances are that if I keep managing it properly, it will never kill me. It won't even come close.

Not so with metastatic breast cancer. It is not a health condition that, if you just stay on top of it, you can probably live a pretty normal life (and life span). No, MBC is a condition that will kill you, and it will do so sooner rather than later. The use of the word “chronic” to describe almost any cancer (with a very few exceptions) bothers me. To put it mildly, the use of the word “chronic” to describe metastatic breast cancer chaps me off royally.

I polled women from a listserv dedicated to metastatic breast cancer patients, asking them if they considered their cancer to be a chronic condition, or something that is not chronic. (Notice I did not use emotionally loaded words like “fatal” or “terminal.”)

The first two respondents were a woman with diabetes and a woman with rheumatoid arthritis. Both said emphatically that their MBC was nothing at all like their other health problems. The other problems were truly chronic, they said. But MBC? It is a fatal disease, not a chronic one. The vast majority of women on the listserv said the same thing, many of them quite emphatically in words not suitable for publication.

My favorite response was from a pharmacist who said that when 90% of the women who have metastatic disease live 20 years or more with it, then metastatic breast cancer will be chronic. But not until then.

My late friend, Kate Strosser, went even further. She insisted that not only did she want to live much, much longer with her MBC, but she wanted the treatments for it not to seriously compromise her quality of life in the process. These things not being likely, she insisted, she wanted a cure — pure and simple. Call the pig a pig, and deal with it.

Metastatic cancer is a long, long, long way from being — or becoming &mdash; a “chronic” disease. Those who would suggest otherwise are engaging in wishful thinking of a most foul and, to me, personally offensive kind. Calling MBC a chronic illness diminishes how serious it is and diminishes the fact that it kills us way too soon. Calling it a chronic illness diminishes the experiences of the women and men who have it and must face the rigors of the treatments necessary just to keep on drawing breath ... and the reality that in a very few years they will die from it anyway. Use of the word “chronic” under these conditions is insulting.

The words we use to describe things help shape our perceptions. And our perceptions shape our actions. I am afraid that viewing cancer as a chronic condition rather than admitting it is still fatal in the short-term (for the vast majority of advanced cancer patients) is damaging to patient care. The more you tend to think in terms of “chronic,” the less you may tend to think in terms of “cure.” And what cancer patients want is a cure. Today.

One cancer survivor emphatically disagrees with the notion that cancer is now a “chronic” condition.  
 

Calling Cancer a 'Chronic Condition' is Damaging to Patient Care

I have faced the apocalypse three times, now, in my life. I managed to come through the first two. Not unscathed…but I did survive. However, the world that I knew afterward was not the same one I'd known before.

The first time it happened I was 30 years old. When I was in my early teens, I'd joined a large fundamentalist religious cult that preached the end of the world by about 1975. Of course, that didn't happen, but personally, it more or less did. I wound up leaving the church in 1982 — getting kicked out actually. As I walked over to a neighbor's house the day I was disfellowshipped, it felt like the earth literally weaved and wobbled under my feet. It was a blow to lose the world I'd known for fifteen years. All the things I thought I knew, all the things I'd done because that was just what good, righteous people do…. All gone. Life went on, however, a new and different life than the one I'd thought I'd have.

The second time was in 2009 when I was diagnosed with inflammatory breast cancer. Another little apocalypse, but this time it challenged not just my worldview and my way of being in the world, but my life itself. Like the first time, I survived this, too. I was lucky. But also like the first time, my life was never the same. This time, though, there was a name for what I was facing — a "new normal."

Today, I'm in the middle of the third apocalypse of my life: the COVID-19 pandemic. No…that's not quite right. This time "we" are in a little apocalypse, not just me by myself. And we're not in the middle of it at all — we've only just begun.

Our way of being in the world is changing every day. Things we thought we knew, things that we thought were truths and steadfast parts of our lives that we could pretty much rely upon, are being revealed as only provisionally true or frankly untrue. Almost everything is in flux for us now, like the ground that moved under my feet decades ago when my personal world shifted on its axis.

We will, however, find a collective new normal. Eventually. I've never liked the term. It makes it sound like everything gets OK again. It's maybe just a little different, but it's basically just like it was before. Before the world fell apart due to a belief system collapse or due to a cancer diagnosis. That's not true though. As many cancer survivors know, a "new normal" always means leaving something behind, something that you inevitably miss.

I miss the certainty and reassurance of being a fundamentalist — of having my world consist of blacks and whites, wrongs and rights cosmic checklists that I can mark off to make sure that I'm OK and in God's good graces. I miss the way I felt good before cancer, a feeling of well-being and the ability to do things that are now beyond me, not to mention the assumption (false though it was) that the future only holds more of the same.

Today, I also miss the way I lived before COVID-19. Coming and going as I pleased, knowing that if I went to the grocery store I'd be able to get whatever I needed, not worrying about whether my high-risk status dooms me to my worst nightmare: the choice between drowning in the waste products from my own COVID-infected, self-destructing lungs or having a tube pushed down my throat to try to force oxygen into me--or being denied that because I'm too old at 66. I worry about the safety of my family and my friends. I am scared senseless at the unnecessary magnitude of the economic collapse that threatens to bedevil us as surely as the late effects of cancer treatments.

I only know one thing for sure. It's a thing that most cancer survivors already know: 

 It doesn't make you stronger, or prettier, or healthier or more kind or charitable…. It just makes you more of whatever you already are.

We will find a new normal, once this global mini-apocalypse has passed (at least, in its extreme form). What that new normal will be like is up to us. We 

lose something, for sure. We will have to mourn what we've lost. But there will be no going back. What we are left with will have to do; it will have to be - or become - good enough.

Take a look in the mirror. Take a look at everyone around you in your life. Take a look at the human race. We are in the process of becoming more of whatever we already are, and we're going to have to live with it for a long time. Let's do what we each can to make it our best. As John Denver said in his song, The Eagle and the Hawk, "reach for the heavens and hope for the future, and all that we can be and not what we are."

One survivor on "New Normals" and living through "apocalyptic" times that reveal who we really are.

Brenda Denzler | Contributors

Cancer Treatment Can Be Like an Arranged ‘Medical Marriage’

Waiting for the Other Shoe to Drop is Haunting

Calling Cancer a 'Chronic Condition' is Damaging to Patient Care

What Doesn't Kill You Makes You

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