Blog Posts | Cancer-- Non-Hodgkin's Lymphoma

Misconceptions About Cancer Part 1

May 15, 2018

Lately, I’ve been bothered by all the misconceptions about cancer I stumble across, either online or in daily life. Many people are terrified of getting cancer, and it’s the misconceptions that drive that fear. So, I thought I would do my part to tell you what cancer really is.

Cancer is the worst thing that can happen to you.

It’s not. Not even close. There are many other things much worse. Any kind of abuse. Refugees chased from their homes by violence. Racism. Rape. Murder. Suicide. War. Famine. Starvation. Chronic, incurable illnesses. Chronic, mysterious, undiagnosed illnesses. Unsaved loved ones. Mental illness. Broken families. And so much more. In the scheme that is my life, cancer has been a more minor issue for me. The abuse and my broken family caused me far more pain than cancer ever has. This may be a cliché, but it’s true. Cancer. Is. So. Limited.

Stage 4 means you are a goner.

I don’t know how many times I have been frustrated by the assumption that Stage 4 automatically means that the person will die from his cancer within a few weeks or months. It’s not. It’s all dependent on the type of cancer. For lymphoma, staging is meaningless as far as prognosis goes. It’s simply a way of saying where it is in the body. By the time I was diagnosed, I was dying, but my lymphoma was only Stage 2. Other lymphoma patients can be diagnosed at Stage 4 and not be sick at all. There are probably other cancers that are similar. Take Stage 2 or Stage 4 with a grain of salt unless you’ve actually researched that type of cancer and know what staging means for that type.

I get amused when all these “alternative” therapies use testimonials from Stage 4 cancer patients: “I was Stage 4, and I used XYZ treatment, and now I’m in remission.” Most of the time, it’s false advertising. If the “testimonial” doesn’t state what type of cancer (and I don’t mean just “breast cancer” or “lung cancer” or “lymphoma”) and what previous standard treatment was done, I take the testimonials about “alternative” therapies with a grain salt.

Lymphoma alone has over sixty types, some very treatable and others not. Some types of breast cancer nearly always spread and/or relapse; others don’t. The same goes for lung cancer, pancreatic cancer, skin cancer, and every other kind of cancer out there. People think of “cancer” as one disease that acts the same for everyone. That’s false. Each cancer is unique. Indeed, each person’s cancer is different than someone else’s even if they have the exact same type.

Our DNA is unique to each of us, and cancer is caused by mutations of our DNA. Why two people with the same type of cancer can have two vastly different outcomes is because each cancer is specific to our DNA and our medical history, causing the cancer to act differently in different people. For example, a coworker of mine had the same type of lymphoma I have. Nine months of treatment put her cancer into remission, and it hasn’t come back, whereas mine keeps relapsing again and again. Medical science doesn’t always know why there is such a difference.

Cancer is always a death sentence.

Before I had even been officially diagnosed with cancer, a few people came to visit me. Two of the couples were extended family. The other couple was from my church. That Sunday afternoon, as we sat in the living room, I nearly choked on the mournful silence of that visit. It felt like I was attending my own funeral before I had even died! They were so sober and concerned and sure I was dying.

After they left, I spoke very emphatically to my family: “The last thing I need is despair! The last thing I want is pity. I need laughter; I need to stay positive. From now on, we are going to tell a joke every 15 minutes.” That last sentence was a bit exaggerated, on purpose, but I was serious. After that episode, we cut visitors down to only close family and very close friends. By this time, I was very sick, and I needed all my energy, positivity, and courage to get through just one more hour. I had no emotional energy to spend on the fears and despair of those around me.

Cancer is not a death sentence. Some cancers are aggressive, meaning they are fast-growing and will cause death if left untreated. Some are slow-growing. In fact, they are so slow-growing that patients will die of some other cause rather than their cancers. Most slow-growing lymphomas are managed much like a chronic disease, such as an auto-immune disorder. Some cancers are considered incurable, but it doesn’t matter. They grow so slowly it will never become a major issue. Don’t consign someone to the grave. Tell them jokes. Laugh. Treat them like any normal person. They need your hope and your love and your laughter, not your despair or fear.

Chemotherapy is horrific and always makes patients terribly sick.

Usually false. This misconception comes from the mid-20thcentury when the treatment literally was worse than the disease. Technically, they could cure the cancer, but it killed the patient. Medicine has come a long way since those early, brutal years. They understand so much more about cellular function, DNA, and side effects. They’ve learned how to adjust doses to keep adverse side effects at a minimum. They’ve learned how to use other drugs to counteract the side effects.

How well or badly chemo goes for a patient depends very much on the type of cancer and how that patient’s body handles chemotherapy. During my first chemo regimen in 2012, I worked full-time through four of the six treatments. I’d get treatment one day and work 9-hour days the rest of the week. My only side effects were losing my hair, neuropathy in my fingers, constipation, and low blood cell counts. The first one I liked, the second was only annoying, and medication dealt easily with the latter two. Most of my chemo regimens in the years since have been similar.

Today, if a person is horribly ill from chemo, it usually means they don’t handle it as well as some and/or they are getting a very high-dose chemotherapy, like the chemo given before a stem cell transplant. The only chemo that was truly awful for me was the chemo I received prior to my allogeneic stem cell transplant in February 2017.

The old trope of the gray, weak, emaciated cancer patient is outdated. In fact, depending on the type of chemo, the patient will actually gain weight because steroids are often a part of the chemo drug regimen and cause weight gain. The consistent comment I have received during most of the past six years is “You look so well!” I’m not always sure whether to laugh or cry when I’m told that!

Chemotherapy always cause hair loss, and hair loss is always traumatic for cancer patients.

Chemo does not always cause hair loss. Some chemotherapies cause hair loss. Some don’t. It all depends on the types of drugs and the dosage. For some of my treatments, people had no clue I had cancer just by looking at me.

As to the traumatic part of losing their hair, that’s not always true either. Some find it greatly impacts their self-esteem. They hate looking sick. They hate that it’s a reminder of their illness. Their hair is a part of their identity, so losing it can make them feel at sea. Cancer takes so much from its victims, and one of those things is hair. It can feel like one more piece of normal gone, like they are becoming strangers to themselves and their bodies aren’t their own anymore.

However, we are each of us unique individuals, and not everyone feels that way. I didn’t. When my hair started falling out about two weeks after my first chemo treatment in 2012, I thought it was funny. Seriously! To me it was an interesting adventure. I’d pull it out by the handfuls or snap photos of the “drowned animal” in the sink after washing my hair. My brother and I joked about it. One of his first words upon seeing me with my bald head was “You look like a crash test dummy!” I laughed hysterically. Mom was the one who had to shave my hair off, and it was harder on her than it was on me!

As a conservative Mennonite, my hair had never been cut, so getting it cut off and then later shaved was a novel experience. I liked being bald; a bald head is so much easier to care for! Getting ready to go anywhere was so much easier: run a rag over my scalp, dry it off, and throw on a scarf! I refused to wear wigs. Why put hair back on my head when I had just lost it all?

Had I not believed in obeying the Scriptural practice of a veiled head, I would have worn my bald head in public with few qualms. As it was, I was pretty uninhibited about my bald head and usually yanked off my scarf at the first opportunity. Friends and family got pretty used to me pulling my scarf off without any warning. I had fun finding colorful scarfs and hats to wear. I’ve lost and regrown my hair 3 times in the past six years, so my scarf collection is quite large and varied by now! (The other bonus of losing your hair is that you don’t only lose the hair on your head, you lose it all over your body. So, I didn’t have to shave for months!)

To be continued…

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Misconceptions About Cancer Part 2

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