It Matters How We Talk About Cancer (Part 2)

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In this two-part series, I’m discussing how we talk about cancer—the words and terminology we use in our interactions. These are conversation “categories” that might not always be helpful to the person with cancer.
(Please read Part One.)

4. Argumentative
I remember telling a friend that I had cancer, and she yelled (literally yelled!) back at me: “No, you don’t, in Jesus’ Name.”
I’ve heard people with cancer admit to being discouraged or afraid, only to have a loved one rebuke them. “You can’t have that attitude.”
Such responses don’t encourage honesty from the person with cancer. If we know you are going to argue with us about how we feel, or what’s happening to us, we just might decide not to talk to you.

5. Empty Proclamations
Naturally, we want to believe that cancer will not take our loved one from us. We want them to know we believe in them. And we want to encourage them.

“You got this.”
“I know you’ll be fine.”
“You’ll do great.”
You are strong.”

But in truth, we don’t know what’s going to happen, or how they’ll do with the treatments, or what they will feel.
Making such definitive statements of expectations puts added pressure.

What if we’re not fine?
What if we don't "got this?"
What if we’re not doing great?
What if we aren’t strong?

As a person with cancer, I might be less inclined to talk with those who've proclaimed…in advance, how I'll do, or put their personal expectations on me about how I will/should respond.

6. Warfare terminology
The other day, I saw a headline about a “cancer victim” who was once again “battling” the disease.
Double cringe.

The use of what I call “war” terms is another common way to talk about cancer.
We hear it all the time, in many ways:

"You'll beat this."
“He’s struggling with cancer.”
“She is strong enough to win this fight.”
“He lost his battle with cancer.”

In essence, cancer is the enemy.
I’m the soldier.
And I’m expected to be victorious.

Author’s Note: In some cases, the “enemy” is not specifically cancer, but unseen spiritual forces—the devil, demons, sin—that are the actual enemy. “Satan is attacking you; you must defeat him.”
In this scenario, I must not only endure the devastating effects of cancer and the treatments, I’m told to “put on the full armor” of God to do battle with the army of darkness. (cf: Ephesians 6: 10-18)
Or I have to discover the root cause (e.g., sin) that brought this sickness on me. (cf: Micah 6:13)

Perhaps it’s God who has allowed/permitted this malady in my life for some unknown divine reason. (The same God who won’t put more on me than I endure?)
Still, I’m expected to be a “good soldier” and prove myself a conqueror in this test of my faith.

Of course, in the case of Job, it was a concerted effort…a cosmic game of chess…between God and Satan on this man. (cf: Job 2:5-6) Job’s tragedy, and ultimate “triumph” then becomes the blueprint for how we are to respond. “Though he slay me, yet will I trust in him.” (Job 13:15)
Yeah, no pressure!

 I often wear This wristband from the cancer center where i’m being treated.

I often wear This wristband from the cancer center where i’m being treated.

As I mentioned, such analogies are common. You see/hear it from medical staff, media, and possibly even a person with cancer.
I admit, I’ve been guilty of employing such images when discussing my cancer. (Hey, I’m a pacifist. You’d think I’d know better!)

I’m not here to challenge the terminology, and I’m not suggesting we correct a person who uses such words/phrases. (Especially if it’s a person who has cancer!) However, we should know that it might not be helpful.
There was an interesting study conducted by the U.K. charity Macmillan Cancer Support that showed framing cancer in “fight” or “battle” terms often makes the patient feel guilty or unwilling to admit their fears, especially if they got discouraged, if their health worsened, or if it became clear the cancer would prevail.

This terminology…this mindset…got me thinking. And led me to ask uncomfortable questions:

If I die from this disease, will I be seen as not strong enough?
Is death a
defeat?
Did I not fight
hard enough?
Should I have done
more?
Did I not have
enough faith?
Will my legacy…my eulogy…be that I’m a
loser, not a winner?

Of course we want the person we love to get better, but maybe it’s best to encourage them without making it a win-or-lose contest.
Perhaps it’s better to just talk about the disease, the treatments, the effects, the prognosis, the options. Even the fears, the doubts and the questions.

The first rule of fight club is…don’t make cancer a fight club!

7. Appearance
Cancer, more precisely, cancer treatments, usually come with devastating effects on a person’s body. Whether it’s hair or weight loss from chemo (In my case, it’s weight gain!) or the removal of body parts, it can impact how we look, and how we see ourselves. It’s awkward when someone calls attention to how we look, whether good or bad. Personally, I never know how to respond when, after learning of my cancer and treatments, someone tells me, “Well, you look great.” And personally, I get annoyed when I’m told “You don’t look sick.” (I know folks mean well, and I may be petty, but it seems dismissive of my illness. I always want to scream back: “Well, I am sick!”)

8. Comparisons
As mentioned earlier, cancer affects…and impacts…each person differently. There is no way to foresee how the disease will progress or respond to treatments. Likewise, it’s impossible to predict how someone will react to the diagnosis. For those reasons, if your loved one has cancer, it’s not helpful to barrage them with comparisons.

“I had that same cancer, and I’m fine now.”
“Radiation is a breeze.”
“I did chemo and was able to work too.”
“My grandfather died of that cancer.”

Author’s Note: Sadly, those who’ve had cancer in the past can often be the worst offenders. Just because something worked for them, they assume that’s the answer for everyone.
Guess what?
The “same” cancer in one person is different in another person.
And each person will respond to or react to cancer treatments differently.


Cancer is scary—for the person who has it and for their loved ones.
Talking about cancer can be uncomfortable and awkward. I can’t imagine any of us want to say the “wrong” thing.
But we don't want to avoid talking either. (I think the only thing worse than some of these inappropriate comments is those who choose silence.)

Consider these quick suggestions:

  1. Think first, then speak.

  2. Acknowledge what you heard, without platitudes. “That really sucks.” “That must be scary.”

  3. Express your feelings. “I am so sorry.” “This breaks my heart.” “I cannot imagine what you are going through.” “I don’t know what to say.” “I hope this all turns out well for you.”

  4. Show your support. “You probably have a wonderful medical team, and lots of loving support, but please know that I'm here for you in whatever way you need.” (Of course, you will need to actually BE THERE if you make this promise.)

  5. Listen to the person, without judgment, without correction, without instruction. Let them say what they feel, or what they fear.

It matter that we talk cancer.
But it also matters how we talk cancer.

(Oh, and Cancer Sucks!)

It Matters How We Talk About Cancer (Part 1)

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Cancer seems to have a particularly ominous reputation.
Hearing the word lead many to automatically think the worst.
Some whisper it, like there’s shame associated with the diagnosis.
Or they substitute the moniker “Big C,” as if saying the word is somehow bad luck.

Maybe it’s not intentional, but such responses send a clear message to the person with cancer: this disease is too heinous to talk about. Which is distressing if you are the person who’s received the diagnosis, and you really need to talk about it.

On the other hand (and probably also unintentional), too often when people do talk about cancer, what they say and the terminology they use can be less than beneficial. Rather than encouraging the person, they instill fear, or feed fear. ("Oh, my uncle died of that cancer." "My sister had that treatment, and she was too sick to work or take care of her kids.")

I’ve lived with this disease, off and on, for nearly 20 years and through three diagnoses. I’ve also talked with others who’ve experienced this disease, and read many more personal accounts. From all this, I’ve compiled these “categories” of unhelpful, even adverse, conversations when it comes to “talking about” cancer. (Which I’m sharing in two parts)

Disclaimer: I’ve been accused of being overly critical of those who “say the wrong thing” to people with cancer. Please know, that is not my intention. I actually want to help all of us be more aware of what we say, so our words won’t be an added burden to our loved ones. 

However, there are phrases and responses that are completely and totally unacceptable. I want to believe those who say these things have good intentions, or don’t know any better. Regardless, I feel an obligation to highlight these unhelpful, insensitive responses.
The truth is: words hurt, so words matter!

I don't want to hurt anyone's feelings by pointing out these less-than-helpful ways to talk about cancer. But know this: if it comes down to a choice, I will always try to prevent more hurt to those who are already in pain. 

1.  Cause and Effect.
Upon learning someone they love has a cancer diagnosis, too many want to find a cause, a reason to explain it. We want to know WHY this happened! So, if someone tells us they have lung cancer, and we immediately ask: “Do you smoke?”

Let’s face it, this inclination makes sense. We like simple, black-and-white explanations.
But such an approach goes deeper, and carries implied judgment. And blame! We’re essentially (probably unknowingly) asking: What did you do wrong? What could you have done differently? Or done better?

The truth is: there probably are…could be… precipitating factors in a cancer diagnosis. If we’d known, some of us with cancer might have prevented it if we’d taken better care of ourselves, if we’d eaten better, if we had not participated in certain risky behavior, if we’d had the good fortune of living in a house without lead paint, or asbestos insulation. Trust me, many of us are already asking those same maddening questions, even beating ourselves up the what-ifs of could have, should have or ought to have done. Insisting on knowing “why?” might be normal, but if you push such discussion, you only add to the guilt and stress already inside us. It doesn’t help when we have to defend past choices to satisfy those who need a reason for our cancer.
(Oh, and be aware: not everyone who has lung cancer is a smoker, just like not everyone who smokes gets lung cancer.)

Along these same lines, some will point to a "spiritual origin" for the disease. They will insist my disease is tied to (i.e., caused by) sin, therefore a manifestation of God’s punishment, or evidence of “satanic” influences. (In other words, the diagnosis is deserved because of something "bad" I did.)

Example: I got this email from someone who visited my Facebook page: "I know you're not a Christian, but I wanted to ask if you've ever considered the possibility that if you turned your life over to Jesus, God would heal your homosexuality and maybe even your cancer." 
(Just to clarify: I do identify as a Christian. This person merely made that erroneous assumption based solely on my sexual orientation!)

2. Instructive.
So often, the first inclination is to tell the patient what they should be…must be… doing. Out of love or concern, we want to fix it.

Sure, they probably mean well, but such demands put great pressure on the person actually living with the disease and making the hard decisions. I’m always amazed (stunned! annoyed! frustrated!) at how those who’ve never had cancer suddenly become experts on not only how we got it, but how to treat it, and insistent on offering unsolicited advice on what to do, and how/what to feel.

“Whatever you do, don’t eat that.”
“You must drink this magic potion.”
“Pray this prayer.”
“Confess your sin.”
"Stay positive."
“Claim your healing.”
"Don't think that way."
“You’re crazy if you let them do chemo.”

Example: A few months ago, I actually had a man on Facebook tell me that my cancer would be cured if I purchased an online book for $10, and followed the diet proscribed in the book. When I informed him I trusted my medical team, and that such outrageous claims were not helpful, he said “Well, just die then.” (Yep, he was BLOCKED!)

Here’s an important fact to know: cancer is not a single disease, and there is not one cure-all. If/When you see or hear someone touting a particular food, or drink, or pill to cure all cancer, you can be assured that they have no idea what they talking about!

3. Victimization. 
“Cancer victim.”
I know it’s a common term, and one that’s used often, but it’s probably one of the least favorite ways to talk about my cancer. 

Webster’s defines victim "as one that is acted on and usually adversely affected by a force or agent; one that is injured, destroyed, or sacrificed under any of various conditions; one that is subjected to oppression, hardship, or mistreatment." 
So, yes, I know contracting cancers fits in the strict definition: Cancer “attacked” me and my body. I was adversely affected and injured by the cancer. 
Nevertheless, I still cringe when I’m referred to as “cancer victim.”

I prefer to frame my cancer differently. 

I didn’t ask for this disease, but I won’t be defined by it.
It is my misfortune to have cancer, but I am not cancer’s victim.
I don’t want to be seen as helpless. Or powerless.
I refuse to adopt a “poor me” attitude or victim mentality.
I was diagnosed with cancer.
I am living with cancer.
I am undergoing…even enduring…the effect of cancer treatments.
I have cancer, but cancer doesn’t have me!


It’s not easy to know what to say when someone gets a cancer diagnosis. We want to help, but worry about saying the wrong thing. 
I think one of the best ways we can help is to ask the person with cancer how we can help.
Ask them how they would like us to talk about the disease. 
And listen more than we talk!

My goal here is to call attention to these conversation so we can do better. So we help the person we love, not add to their pain.
Isn't that what we want for those we love?

We’ll continue this in our next article…

Just two pills...

Vacation is over.
(Literally, and metaphorically)

As I shared in a previous article, a bone scan last month showed a few “hot spots,” indicating my cancer has metastasized. The doctor recommended I go back on the treatment protocol designed to stop my body’s production of testosterone. In this kind of cancer, the male hormone is food or fuel, accelerating growth. The hope is that lowering my body’s testosterone level will “starves” the cancer. 
<fingers crossed>

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I was on a similar treatment for nearly three years that involved bi-monthly injections.
The treatments successfully “managed” the growth and spread of my cancer.

This time, it’s an oral medication. 
Just two pills, every morning. 
Obviously, that's more appealing than injections, done with GIANT needles that honestly looked like those in a cartoon.

I wish this change in dispensing the drug was enough for me to rejoice, but methodology is not the point.
While I’ll no longer have an actual excuse to be a “pain in the ass,” I’m struggling with so many emotions right now.
(Oh, the puns in those two sentences!)

When I began the injections, I had no idea how much my life would change.
The effects of the treatment would be worse than anticipated.

It wasn’t just a reaction to the drug itself. (I’d usually get queasy after the injections.) As my testosterone levels dropped, there were physical reactions which proved to be devastating and debilitating.

  • Bone and joint pain.
  • Extreme fatigue.
  • Significant weight gain (nearly 80 pounds)
  • Muscle weakness/Numbness/Neuropathy 
  • Cognitive issues (e.g., memory loss, lack of concentration)

For more than a year, I continued to work full time.
Some days, it was all I could do to make it to my desk.
Often, I'd get sick at work. Even in meetings. Several times, I didn't make it to the restroom. 
Many days, I had to leave early.
Twice, I actually got confused driving home, with no idea where I was, or how to get home.

Eventually, the pain, lack of mobility, and my inability to concentrate forced me to leave my job. My career.
I was placed on medical disability.

My world shrunk.
I went from working in a large company of more than 300 people to days alone in our small home.
I wasn’t permitted to drive, outside of a small radius around our house.
If we went to church, to a movie, or to the theater, it would tax me to the point I’d spend the rest of the day exhausted, and recovering.
Essentially, I was a shut-in.

When we made the decision about 18 months ago to stop the injections, and allow my body time to heal, my life changed…again. 
Within a few months, I felt so much better. All the damage done to my body didn’t magically disappear, but the difference was significant.
To use the cliché, it was like getting a new lease on life.

Next week, the treatments begin again.
Two pills...

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I intentionally waited until after our NYC vacation, not because I anticipated immediate side effects, but because I wanted to NOT think about having cancer. At least, for a few days. And it almost worked. One day, we were sitting in Washington Square Park, on a beautiful morning, and it hit me suddenly: this would probably be my last trip to one of my favorite cities. (The previous treatments had left me with limited mobility, so navigating NYC was a major challenge. I have no illusions that additional treatments won’t have additional impact.)

The doctor hopes this new protocol won’t have the severe side-effects I experienced on the injections, but I’m a realist. (And a researcher! I’ve read the materials.)
“Hot spots” might be great when searching for a dance club, but on a bone scan...it’s serious!

As I write this, I’m staring at the pill bottle, blurred through watery eyes.
I’m sad.
I’m also anxious.
And I’m frightened. Not of some ominous, ultimate outcome <cue the funeral dirge>, but of the ordeal I anticipate, based on prior experience. 
There's a trepidation about enduring it all...again.
I think of my husband, who is so supportive and caring. I hate that he has to do this again. This impacts him in many ways as well. 
Mostly, I dread going back to that narrow, restrictive, limited life. 

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It’s only two pills.
But I know: my world is about to change…again.

“Once more unto the breach, dear friends, once more…” 
~ William Shakespeare, Henry V


Author Note: I don’t share these thoughts to be maudlin or paint a “woe-is-me” picture of my life. I certainly don't feel that way, and acknowledge I have so much for which to be thankful. Writing helps me process.  It's therapeutic. 
Plus, I know there are others confronted with medical challenges; I share to let them know: you are not alone! (I’m always humbled to receive messages from folks who’ve read my ramblings and gained some insight or encouragement for their own journey, or that of someone they know.)

Confronting Cancer...Again!

I am a cancer survivor!

For a little background, this is the “short” version of my journey so far. It’s not intended as a woe-is-me story, just a recap of the details and events:

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Back in August of 1999, while many folks were worried about Y2K, I was diagnosed with Prostate Cancer.
We’d been watching my PSA (Prostate Specific Antigens, a substance produced by the prostate gland) numbers increase for more than a year—an indicator of a problem. My doctor assured us it probably wasn’t cancer, since I was in my 40s, and most men don’t get it until later in life. 
“It’s a one-in-million,” he told us.

But alas, it seem I am THAT special; a biopsy confirmed the cancer.
(I would have much preferred to use my one-in-a-million status to win the Lotto!)

We did radical surgery, then seven (brutal) weeks of daily radiation treatments.

I was cancer free for 13+ years, then the PSA numbers began to increase. (If I don’t have a prostate, I’m not supposed to have the antigens.)
We “watched” it for about a year as the numbers notably increased.
But it was clear: the cancer had returned.
The doctor recommended I begin a hormone suppression protocol, designed to stop my body’s production of testosterone, which “feeds” the cancer.

I was told when we began the injections, it would be like going into menopause…times ten.
They provided a list of possible, as well as unlikely, side effects:

  • Fatigue
  • Bone and joint pain
  • Headaches
  • Dizziness
  • Weakness 
  • Digestive problems
  • Mood swings
  • Hot flashes
  • Night Sweats
  • Weight gain
  • Decrease in libido
  • Groin pain
  • Insomnia
  • Acne
  • Memory and cognitive issues
  • Enlarged, sore breasts

And then there was a small list of “if these occur, consult your doctor” side effects.

Yeah, I had almost all of them!
(My doctor joked that I was the poster child of side effects for this drug!)

I was on the protocol for nearly three years.
My PSA numbers were pushed back down to negligible, as well as my testosterone levels.

Personal Note: During this time, I read an article by a man who complained of being in “hormone hell” because his t-levels were 180. (Normal testosterone level is 280 to 1,100 nanograms.) 
Mine were less than twenty.
I wanted to scream: “STFU!”
If 180 is “hormone hell,” I was apparently testing the depths of Dante’s infernal levels!

While the injections were “managing” the cancer, the side effects were debilitating, and took a toll on my life.

I gained nearly 80 pounds, and had trouble walking. I fell several times, and had to use a cane for balance and support.
I was still working full time…50-60 hours a week…at a high-demand, fast-paced job in PR and Communication for a large national company. But my energy level and my cognitive issues began hindering my performance. (I had trouble thinking and writing.) By the time I’d get home after work, I barely had the energy to eat, and then would go to bed. (Not that I was sleeping much!)

One day, going home from work on my usual route, I got disoriented. I honestly didn’t know where I was and couldn’t remember how to get home. When it happened again a few weeks later, my partner (now husband) and my doctor strongly suggested that I take a disability leave from work.
It was the logical...but difficult...choice.

Skip to November, 2016.
My life had shrunk to the house, and occasional short trips. I was discouraged from driving, due to my cognitive problems. Venturing outside was painful, and had to be planned for required stops and unexpected bouts of nausea. 
My oncologist and I decided to suspend the treatments, and give my body a rest and recover.
I began to feel so much better almost immediately.

We expected to the PSA numbers to rise, and they did.
But I was in no hurry to resume the treatments! 

That brings us to the present. 
(I’ve written extensively about my cancer journey. Those posts can be found in the Cancer Resource section on my website.)

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For the past few months, I've experienced increased (significant) pain in my back and legs. My oncologist recommended a bone scan.
The results were…unexpected.
(Not in a “I just got a hug from Matt Bomer” kind of way.)
Some "hot spots" (my doctor's term) were showing up in my pelvis and rib cage.
These are early indications of metastasis.

The doctor says I need to begin hormone suppression treatments again, but recommends using a new medication.
It’s a daily pill instead of injections (I like that!); he thinks the side effects won’t be as severe for me.
(I like that even more!)
<fingers crossed>

But the meds are very (VERY!!) expensive.
I mean, one month…30 pills…is nearly $3,000.
And that’s after the insurance takes it down from $12,000. (Insane and immoral!)

Obviously, we aren’t rich, and can’t afford that.
Thankfully, the cancer center where my doctor works has a patient representative who works to get assistance.
We tried to go through the drug manufacturer, but we make too much money to qualify.
(We are not rich, trust me!!)

He said that if we can’t get assistance, I’d have to go back to the injections.
I wasn’t sure I was ready to endure that…again.
(That was the day I spent crying alone at the house!)

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But a few weeks ago, we got some Good News. (No, still not a hug from Matt Bomer.)
The patient rep was able to find a foundation, and I got a grant that will pay for the treatments for at least the first year. 
At the end of that period, if there are funds, we can re-apply.

Personal Note: I’m truly grateful, of course, but it does make me wonder: Why in the hell do people in this country need a grant for life-saving medication? 
(My answer: it’s a side effect of our for-profit healthcare and a Political Party owned by them!)

So, I begin the new protocol in May, after my husband and I get back from a trip we have scheduled for his 60th birthday and our 20th anniversary.
(I didn't want to start before that, because if there are side effects, I'd feel like shi---uhm...I'd feel horrible.)

After the test results came back, I spent the first week essentially in sadness, and denial.
I took my cue from that great prophet (Scarlett O’Hara), who taught us: “I'll think about that tomorrow.” 
But now, I’m mentally, emotionally and emotionally preparing myself.

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In the Christian Church, we’re in the Lenten season, which focuses on reflection and preparation. We remember the suffering and struggle of Christ that leads to Easter Sunday, and His victory over death. 
On “Good Friday,” the disciples were devastated that their plans…their expectations…had been destroyed. 
This was not how they thought things would turn out.
Then…on "Easter Sunday"…they found a displaced stone, and an empty grave.

Defeat is transitory.
Attempting to confine and restrain Love is futile.
Light will not be overcome by darkness. 
Hope will burst forth.

I’m not sure what happens next (Are we ever?), but I will rely on my faith, my family and my friends.
I’ll focus on the message of Lent, and the promise of Easter, as comfort and strength.

Life doesn’t always work out the way we planned. 
We find ourselves in the darkness of doubt and defeat.
We feel abandoned.
“This is not how I thought things would turn out.”

But that's not the end of the story. 

So the fight begins…again.
<cue the Rocky theme song>

Thanks so much for your ongoing prayers, good thoughts, words of encouragement and positive energy. 
They are appreciated.

I am…will be…a cancer survivor!

Oh…and Cancer Sucks!