As it turned out, I didn't have to die from my long-term cancer side effects. I only had to feel like I was about to for long enough for the medical profession to finally take notice.
"It's like going into a bar fight," my friend explained cancer treatment to me. "You know going in that you're going to get hurt, but you try to hurt the other guy more." I figured he probably knew what he was talking about. He was, after all, a radiation oncologist.
But as my upcoming treatments for inflammatory breast cancer were laid out in front of me and I became aware of all the short- and long-term damage they could cause, I became hell-bent on avoiding getting hurt by them, no matter what my friend said. I wanted to emerge from the bar fight with only superficial wounds that would heal in no time. I wanted to walk into the sunset years of my life whole and undamaged.
I wasn't naive. I expected some pain, some suffering. Short-term hurt, I could handle. I became febrile and neutropenic after my first two chemo infusions. I rolled with the punches. I developed peripheral neuropathy. The skin on the soles of my feet became cracked and inflamed. I lost my hair. I was often nauseated. My arm hurt after my mastectomy, when I lost my lymph nodes and lymphatic fluid had a hard time flowing the way it should. These were the short-term harms of treatment, and I managed them.
What I tried very, very hard to avoid were the long-term harms — the harms that could make my sunset years more burdensome and unfulfilling. I dropped 50 pounds and, being one of God's original junk-food junkies, I reformed my eating habits. I fought like a madwoman to preserve as much lymphatic integrity as I could, in my surgical-side arm. I took measures to protect my heart from damage by the drugs and radiation. After treatment ended, I did moderate exercise four to five times a week.
In short, there are many things that could be said about me and how I went through cancer treatment. That I was devil-may-care and inattentive would not be one of those things. I worked hard to stay on top of everything so I could have a future — so I could survive the cancer AND the cancer treatments with my basic health intact!
But I failed.
It started with progressively increasing inability to do the exercises I was regularly doing, and my fatigue levels slowly climbed so high they were off the charts. After a year, I had begun panting hard when doing things that I could do without much trouble immediately after my treatments had ended. My muscles screamed with pain when I climbed the stairs to my office at work, and it took phenomenal amounts of energy just to reach out and pick up a pencil.
When I told my oncologist what was happening, the response was, "Well, it's not your cancer treatments. You should be all recovered from those by now."
No @#&!, Sherlock, I thought. I knew I should be all recovered! But I wasn't, and I wanted to find out why. I was convinced it was the emergence of late effects of treatment. My oncologist denied all knowledge. Clearly, I was on my own with this.
As the years slowly rolled on, I remained cancer free, thankfully. However, my functional status continued its slow decline. I went from specialist to specialist trying to find an answer for what was going on and how we could treat it. I had my cortisol levels and my thyroid checked. I consulted cardiologists, a pulmonologist, a GI specialist, a sleep specialist, a neurologist, a rheumatologist.... I made a special trip out of state to consult at a clinic that supposedly focused on late cardiac effects of cancer treatment. I had lung tests and cardiac tests and sleep tests and blood tests galore and....
The tests. Basic, "gateway" tests that you have to flunk to qualify for more elaborate testing that might show something. I grew to hate them, because they inevitably said I was healthy as a horse — or very nearly so. Only minor anomalies here and there that physicians were not inclined to take serious note of. Nothing that would warrant further testing.
When the tests said I was fine, the doctors told me that the reason I was losing my ability to exercise was because I was deconditioned, meaning they thought I'd been lying to them about exercising regularly all along. How do you become "deconditioned" from doing exercises that you do all the time? You don't, normally. So they clearly thought I was lying to them about my level of activity.
As I lost not only my ability to exercise but also my ability to mow my lawn, walk the fence line on my property, carry groceries in from the car, climb the stairs to my front door, or even take a shower without exhausting myself, I was told that the reason my functional status was so bad was because I needed to lose weight. I had a reasonable BMI when the doctors first started telling me this. But as my fitness declined, I slowly regained the weight I'd lost.
And of course, there was the old psychogenic cop-out: "You're just anxious." Throughout cancer treatment and beyond, I was in therapy. The therapist watched me lose the ability to do things that had always given my days a shape and a tempo and meaning. Things I could do without a lot of trouble during and right after cancer treatment. As I piled up normal test results and endured dismissive consults with specialists, I asked my therapist if it all could be psychogenic and not physiological. Every time we discussed it, the verdict was no. Any psychological component to what was happening was secondary, not primary.
I finally quit looking for answers. I couldn't stand to be told any more that I was fine when I clearly was not, and I couldn't bear the thought of having one more dismissive note put into my electronic health record on the basis of tests whose results were considered more evidentiary than my statements. I figured it was OK that no one could figure out what was wrong. One day I'd drop dead because of this, and everyone would be shocked because I had been (on paper) so healthy! What could have made me die? they'd wonder. And they'd do an autopsy, and at last we'd have an answer.
As it turned out, though, I didn't have to die. I only had to feel like I was about to for long enough for the medical profession to finally take notice.
In the fall of 2021, I went up to the mountains with two friends to see the beautiful fall colors that have made the Appalachians famous. As we gained elevation, I became very short of breath—unable to speak without pausing to breathe mid-sentence. By the time we got to the hotel room that evening, I was so exhausted and weak that I could barely move, my heart was racing, my breathing was swift and shallow, my core body temperature was so low that I couldn't get warm, I felt shaky inside, my chest was tight, my skin was gray....
I knew what was happening. I had pushed myself too hard to have fun with my friends, and my body was reacting as it always did when I exerted myself. My friends wanted me to go to the ER, because they thought I was having a heart attack. I'd already checked out these symptoms in previous ER visits, and it wasn't a heart attack. Of that I was certain.
"Modern medicine has nothing to offer me," I said. "This is not a heart attack, and they don't know what it is. There's nothing they can do." Reluctantly, my friends let the matter rest, but not before making me promise to go — again — to my primary care physician and tell him what had happened.
So a couple of weeks later, I did. As I finished telling him about our trip, I said, "Thanks for letting me tell you about all these symptoms again. Now I've kept my promise to my friends. I know you and I have checked this out many times before and there's nothing modern medicine can do to help me. So I'm good, here." I stood up to leave.
"Wait! Wait!" he said. And that was the beginning of the end. The end of my quest for answers...and all without my having to die to get them.
My PCP ran a couple of tests that, as usual, came up fine. Instead of letting the matter rest there, this time he referred me to a new pulmonologist, who also ran tests that came up fine. He also refused to let the matter rest. Instead, he sent me out of state to get a special test that is not widely done, and the test came up with an answer! The reason I feel like I'm suffocating when I try to exert myself is because my red blood cells aren't transferring their oxygen efficiently to my muscles. In a sense, I feel like I'm suffocating because I am! I also have mild pulmonary hypertension.
With a diagnosis in hand that explained a lot, I took new hope. My pulmonologist said I could try pulmonary rehab to see if I could improve my functional status. As I exercised, the nurses would ask if I was experiencing any pain.
"Well, yeah," I gasped between breaths. "Tightness in my chest, and some pain radiating up into my neck. But this is normal for me. This happens all the time when I exert myself. It's not a heart attack. I've had it checked out many times already."
They were having none of it. Nor was the physician overseeing the rehab program. In all the tests I'd had done over the years, he noted, I had never had a left heart catheterization to definitively rule out blocked arteries as the cause of my pain.
So off to the ER he sent me with a chart note that I needed a left heart cath. At the ER, however, they did the traditional ECG, pulled blood samples, did chest X-rays, and told me patronizingly (as if it would be a revelation to me) that I was not having a heart attack and I could go home. I refused to go, however, without the left heart catheterization the rehab doctor had told me to get.
Long story short, I got it. In fact, I got a simultaneous left and right heart catheterization — and what I think is probably the final answer that explains my symptoms: I have atypical restrictive cardiomyopathy. My left ventricle, in particular, is stiffening and becoming less and less able to pump efficiently. That's what causes the pain when I exert myself. The pain is not a sign of an impending a heart attack. In fact, my arteries are nice and clear.
The cause of this stiffening, my new doctor (an onco-cardiologist) explained, was very likely damage due to my cancer treatments, which included high doses of an anthracycline and massive amounts of radiation. Studies have been showing, he said, that patients who have had this kind of treatment are at significantly higher long-term risk for suffering heart damage. The trick is, the damage doesn't necessarily reveal itself in diminished ejection fractions, which is the only thing breast oncologists have been trained to pay attention to.
So I'd been right from the very start. The bar fight that was my cancer treatment did hurt me permanently, despite my efforts to prevent it. The cancer didn't kill me, but the cancer treatments have seriously maimed me.
And I had been right to suspect a heart problem when my symptoms first began to develop. Everyone had been using the wrong measures to determine heart damage. Ejection fraction is not enough. Everyone was ignoring my higher risk due to type of treatment I received.
Of course, there will be some who will say we can't know for sure that the cancer treatments caused all of this, even if there are studies that say such treatments can do so. To that, I can only say this:
I can tell you when I first experienced the symptoms that came to dominate my life: nine days after my first infusion, and twice again in the following three days. Each time, the symptoms were ignored, when I pointed them out to the nurses. Instead of seeing them as a warning flag of possible damage being inflicted, they saw them, like so many doctors saw test anomalies in the years to come, as minor and inconsequential.
Today, as far as we know, I remain cancer free, which means I hurt the "other guy" even worse, thankfully. But because of that fight, there will be no living my sunset years whole and undamaged.
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