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!

Old Wounds

About a year into my Hormone Suppression Therapy—designed to slow the growth/spread of my Metastatic Prostate Cancer—I noticed a old scar on my hand that looked red and raised. The wound had occurred more than three years earlier, caused by grease from the grill splattering up on the top of my right hand. It left three small scars, in the general shape you’d expect from drops of hot oil. 

I thought it might be an infection, but topical medication wasn’t having an effect.

Later, a small red circle showed up on the top of my foot. Like my hand, the area was red and raised, very prominent and noticeable. It was in the exact location where I'd been stung by a wasp several years earlier. (Not to be gross, but I included a couple of pictures below)

What could cause these old wounds to suddenly become prominent?

And then, the paranoia sets in.
I think anytime something unusual happens in the body of a cancer patient, we experience a small amount of panic.
And the questions:

Is this connected to my cancer?
Is the cancer spreading?

So, I consulted my Oncologist, who suggested I visit my dermatologist to have them checked.

Another doctor. Another doctor visit.
That's probably one of the most common activities in my schedule—visiting doctors.

My doctor examined me, and told me the medical name was Granuloma Annulare.
My first thought (again, cancer-centric): Well, that doesn't sound good, since it rhymes with melanoma, and I know what that is!

But he calmed my fears, assuring me it was harmless. Even without treatment, he said it would probably go away…in a year or two. (Two years?) It was more than likely caused by an elevation in my blood sugar.
Interesting, because an imbalance in blood chemistry is one of the side effects of my cancer treatments.
Which means, I have a side effect that's caused by another side effect.

Lovely!

But it did bring up a philosophical realization. Cancer is our body, turning on itself...destructively. And I think it triggers a similar phenomenon in the non-physical aspects of our life: emotional, spiritual, psychological, relational, etc. Cancer upsets our well-being. All of it. The disease has a way of highlighting old wounds and aggravating old scars, forcing them to the surface so we can (must?) deal with them. It persistently challenges weak places in our sense of identity—stirring up buried issues of inadequacy, chipping away at the facade of a deeply ingrained negative self-image, scratching away our perceptions of beauty, infecting flaws in relationships, revealing unhealed hurts.

I know that’s definitely been true for me. Painfully true!

  • I look at myself sometimes in the mirror and I'm barely recognizable. My body has undergone significant changes, including the embarrassing loss of some bodily functions, excessive weight gain...and BREASTS! If we are what we see in the mirror, then this disease will wreak havoc on our self-esteem.
     
  • The limitations brought on by pain and fatigue have me almost home-bound. I lost a successful career that I'd worked for many years to create. If we are our jobs, the inability to work will devastate our sense of value.
     
  • I’ve confronted the grief of losing my biological father who abandoned us when I was very young. I’ve also dealt with the life-long emotional distance that exists with my adoptive father, and the pain (and wounds) I live with because of his verbal abuse. He had never once asked about my cancer nor how I'm doing. I stood up to him a few years ago, and he hasn't spoken to me since. Truth is, the disease can challenge our most significant relationships, regardless of the stability. Wounds and weaknesses will surface!
     
  • It hurts that I am not able to give my partner the intimacy that we once knew, but thankful that our marriage is not built solely on that one dimension. I cry as I watch him listen to the doctors. I can see that a union based on the physical, or the sexual or the visual could crumble under the weight of the devastating results of cancer. (I know for a fact that many relationships don’t survive the adversity of this disease.) If we are the part most affected by our disease (a breast, a limb, sexual function), we will feel inadequate. 
     
  • I've found that someone with control issues (Not me, of course!) will be dismayed at their inability to be in charge—of our bodies, of our energy...often, of our destiny. And if we see ourselves as self-sufficient, that will quickly be impacted. Cancer is a force in our body, asserting control. More than a year ago, my doctor optimistically talked about "managing" the cancer, now we know...that's an illusion.
     
  • This disease impacts those around us as well, drawing attention to their wounds, too. Their fears, their insecurities, their grief come to light with this diagnosis. And they may not always respond in the best, kindest way. We may learn they are more comfortable not being part of our struggle, and they exit our lives now, rather than face what they perceive to be the ultimate separation later. It's sad. It's cowardly. And it's hurtful. But I've come to understand, and seek to forgive. 
     
  • I think when we initially hear a “cancer” diagnosis, regardless of what might come next about prognosis and treatment, the word will scream in our head, and echo back with the dread of death. It brings to the surface the issue of our mortality. That's rarely pleasant. If there are any suppressed metaphysical questions (e.g., "What happens after this?"), having a life-threatening disease will shine a bright light on it. We can become paralyzed with fear, lost in regrets and negativity can come to the surface, overwhelming our emotions, impacting those around us and actually hindering our recovery. 
Author's Note: I am so grateful for the reality of my faith, and I feel it's been a constant comfort to me throughout the ordeal. No, that doesn’t mean that I don’t get afraid, and I'm not presenting myself as a saint. But in the midst of the fear, there is always that “still, small voice” of peace that keeps me from panic. I’ve never doubted God’s love, God’s grace, God’s presence or God’s purpose. I’ve never questioned or been angry with God about the disease. ("Why me?") And I’ve refused to give in to the suggestions of some that my cancer is somehow an indication of God’s displeasure with me.
I don’t have all the answers, but I am not overwhelmed by the questions. 

So, in addition to the physical effects that any form of cancer brings to a body, it also reveals previous emotional hurts, scars, bruises and wounds: chinks in the armor of our self-confidence, the fragility of life, the fallacy of our ability to control, questions about our faith and destiny, faults in our relationships. And don’t get me wrong. I think, in the long run, this is a good thing. If we don’t face up to these old wounds, they are forever there, below the surface…waiting to infect and inflict us again. For me, cancer shows where I need help and healing!

 

 Too gross?

Too gross?

Note: Portions of this post were originally published on a previous blog; it has been revised and updated for this entry.

Honesty. Honestly?

Thomas Jefferson said,"Honesty is the first chapter in the book of wisdom."

From childhood we’re taught to be honest. In school, we're told "Keep your eyes on your own paper." 
We hear stories about famous, honest people, such as George Washington and the cherry tree (which paradoxically, may not be a true story) and Abe Lincoln, who was apparently so honest it became part of his moniker. (We probably don’t see lessons in this virtues using many modern politicians these days!) 
We are instructed not to cheat at games or in sports. (Wait until you get a pro contract for that one!)
If we were raised in church, it was part of our spiritual code.
In short, we’re commanded to tell the truth. It’s drummed into our moral psyche: “Honesty is the best policy.”

But is that…well, the truth?

I mean, is honesty always the right thing to do?
Is it always a simple choice between truth and lie?

If Aunt Ethel asks “Do you like this hat?” what’s my response if I think it looks like a plastic flower arrangement exploded on her head?

If your wife asks “Do I look fat?” do you respond truthfully that you’ve noticed she’s looking plump?

And don’t get me started on Santa Claus, the Easter bunny and the Tooth Fairy!

Here's my dilemma when it comes to honesty as it relates to my cancer and my treatments. I regularly get asked “How are you feeling?” It’s usually accompanied by the tilted head nod and sympathetic look. Making it worse, sometimes they'll include qualifying statements as "You look great, so how do you feel?" or "How do you feel, because you don't look sick at all?" That seems to preclude any information I should give to the contrary. (Maybe Fernando, Billy Crystal's character on SNL was right: "It's better to look good than to feel good.")

Regardless, I’m never sure how to respond because I'm not sure what they REALLY want to know. There could be genuine concern, or they're only being polite. 

Am I honest, or do I lie to them?
How honest should I be?

Here’s The Truth: I rarely “feel” great; some days are better than others, but it’s all relative. I’m almost always experiencing some kind of discomfort—from achy joints to intense hot flashes to nausea to fatigue. Not to mention there are many aspects of my condition that Mom taught us should not be discussed in "polite company!" (Much of what I "feel" falls under the category of TMI—too much information.) 

How do you tell someone about the frustration of out of control bodily functions that require I stay inside, and makes me afraid to be outside, not "close enough" to get to a restroom in time?

How do you explain being so tired you can barely walk, or mood swings that causes you to cry uncontrollably?

Is there a way to politely talk about how emasculating it feels to have enlarged breasts that are so sore, even a t-shirt causes pain, or being unable to be sexually intimate with my husband? 

See...TMI.

I have a Pentecostal friend who tells me I should "speak" what I want as my outcome. In other words, each time someone asks how I'm doing, I'm supposed to say "I'm healed." Oh, and I should end it with "In Jesus' Name!"
Is that...honest? (There's an elaborate theology built around this concept, but it's not a faith-system I embrace! To me, it always sounded more like magical incantations.)

How are you feeling?
I don't know how to respond...honestly.

I don’t care for trite answers, such as “I'm hanging in there,” like there's a danger I might slip and fall off the planet at any second.
If I’m candid with everyone who asks, at some point, it's bound to comes across as perpetual whining or hypochondriacal complaining. 

Of course, there’s always the standard courteous, perfunctory “I’m fine,” which is good decorum and probably gives them a warm and fuzzy feeling because they asked. (This is not meant to sound callous or prejudge their motives, but let’s be…truthful. Most of the time, it’s just a polite greeting, without expectations of an "organ" recital: my bladder is infected, my kidney is inflamed, my penis doesn't work, I have breasts!) 

How are you feeling?
I reckon I could come up with some cleaver, witty comebacks. Of course, I'd have to avoid being rude, crude, cynical or sarcastic...and for me, that sometimes an effort. ("I feel like I might barf at any minute, so be prepared to use that hymnal as a shield!")
At times, I want to respond in my best Jack Nicholson voice: "You can't handle the truth!"

Then we have the other part of my conundrum: family and close friends who actually want to know.
And what about my husband?
In the past, I’ve resisted giving him too many details; I don’t want him to be concerned about every new symptom, side effect or pain.

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I looked up the word honesty and learned it originally carried the idea of “honor” more than our modern concept of “truthful.” That helped me with a strategy. I’m working on honoring anyone who asks me, at the level of our relationship.

For the casual—those who are being polite—I will honor their civility by responding kindly, but probably without much personal investment. "I'm taking it one day at a time. Thank you for asking." 

For those closest to me, I want to honor their genuine concern and be as honest as possible. "I am struggling today." "It's been a good day." And sometimes it may be: “Thanks for asking, but I don’t want to talk about it right now.”

 

It was William Shakespeare who told us “No legacy is so rich as honesty.”
However, the Bard also warned us to “Take note…honest is not safe.”

Honesty?
To be honest, I'm not sure!

 

Note: Portions of this post were originally published on a previous blog; it has been revised and updated for this entry.