Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.
Came across this little gem of an article today, in the online edition of Coping With Cancer magazine. It’s by Anne Lawton, an oncology nurse, and it’s about hope.
Hope, she's come to realize, is “the only word that matters” in her business.
Anne’s learned that, from the patients’ standpoint, the nature of hope changes over time. At first:
“People hope their doctor is good. They hope they make it through surgery, and they hope their cancer is treatable. They hope they can tolerate the chemotherapy.”
Later on in the cancer journey, many find themselves hoping for different things:
“They hope for a cure. They hope for a nice, full head of hair, eyelashes, and eyebrows. They hope the neuropathy and the other side effects go away. It's no longer just survival they hope for; they want their life back. They have a lot to do, and they hope the cancer never comes back.”
And if it should happen that the cancer does come back? Hope changes yet again:
“They hope for a life worth living, with few cancer-related side effects. They hope to live long enough for graduations, grandchildren, weddings, or that trip of a lifetime. They hope to complete their "bucket list.”
Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.
Viewing hope as a continuum, can we really say it’s the same hope at the end of such a journey as at the beginning? I’d say yes, it is – although the hope has changed and matured. It’s grown, just as the patient has grown all through this troubling, painful, emotionally-taxing – and, yes, sometimes even spiritually-uplifting – journey.
1 Peter 1:3 celebrates how God “has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead.”Living hope. I think that ol’ apostle was onto something.
By God’s generous grace, hope is alive. It grows and changes as we grow and change. Hallelujah!
This Easter, I preached on the topic, “This Is the Life.” While, for many, it’s a phrase that conjures visions of shady cabanas on tropical beaches, shrimp cocktail and umbrella drinks close at hand, I was thinking about something different.
And no, I wasn’t thinking about what this guy means by the phrase, either:
“This is the life” is Jesus’ promise to his disciples in John 10:10, as he proclaims, “I came that they may have life, and have it abundantly.” It’s a promise they wouldn’t begin to understand until after the resurrection.
This whole matter of abundant life takes on a different cast when that life includes cancer. What does it mean to “have life abundantly” when that life, for a cancer survivor, includes a low-level sense of foreboding that’s always lurking somewhere?
I think Matthew’s account of the resurrection supplies an answer. It employs a curious turn of phrase, describing Mary Magdalene and “the other Mary” (probably Jesus’ mother), as they rush from the tomb, having heard the angel tell them Jesus has been raised from the dead. Matthew says, “they left the tomb quickly with fear and great joy...”
Whuzzat? With fear? And great joy? Sounds like an oxymoron.
No, it’s no oxymoron. Our emotions are seldom simple and elemental. They’re often mixed.
Actually, there are times in life when fear and joy do coexist. Try to imagine the first time you fell in love, and realized that person you loved felt the same way about you. Did you ever feel more alive than in that moment?
And wasn’t it also true that, having asked that special person (or having been asked) to go out on a date, and having heard that person say yes (or having said yes yourself), the thought suddenly occurred to you that you would have to actually participate in said date, and you would somehow have to avoid making an idiot of yourself? Fear and great joy!
Or, think about the most significant graduation ceremony of your life, that highest level of education you’ve completed. If you were able to attend such a ceremony, recall the joy of accomplishment you felt that day, in cap and gown, looking around at the grinning faces of all your classmates. Remember, too, the other thought that came to you at that moment: “What am I going to do tomorrow?” Fear and great joy!
Brides and grooms on their wedding day, first-time parents driving that baby home from the hospital – on these and many other occasions in life, fear and joy coexist. Not without some tension between them, perhaps, but there it is. This is the life.
The two Marys were likely feeling something similar, because the first thing the risen Jesus says to them is “Do not be afraid.”
This has nothing to do with whether or not they may happen to disbelieve what they’re seeing, or whether or not they suspect it may be some sort of ghostly apparition, some wraith vomited up from dark places to bedevil them. No, I think they realize who it is, and can at least grasp the bare outlines of the paradigm-busting wonder that’s taken place. I think the two Marys are afraid because they realize what the resurrection is going to mean for their lives.
Surely these wise women realize that, if they continue on as Jesus’ followers, and go tell the other disciples the good news they’ve just heard and seen, they’re going to unleash into the world a powerful force that there will be no stopping. From this day onward, they’re going to be riding a mighty wave that will propel them onward with terrific force – and at times that position on the crest of the wave will be a dangerous place to be.
Yes, of course they’re going to do it, of course they’re going to bring the good news to their companions. But their fear and their joy are intermingled.
This is the life. This is the new life God has given them. Yes, perhaps they recalled hearing Jesus say he’d come that they might have life, and have it abundantly, but until this moment those had been nothing more than inspiring words, a rhetorical flourish. How could they possibly have known that new life would come to them through the nail-pierced hands that now rest on each of their heads, and through the nail-scarred feet they are even now washing with their tears?
The Danish theologian Søren Kierkegaard once described this aspect of the Christian life using a very vivid image. He said that sharing the Christian faith with others is like handing them an extremely sharp knife.
A sharp knife is a useful tool. The greatest chefs, in fact, take meticulous care of their knives, sometimes even packing them into special carrying cases and bringing them home at night, so no damage will come to them. No one, Kierkegaard goes on, would think of handing a sharp knife to another person as one would hand over a bouquet of flowers. It’s just not done.
One of the first things we teach kids, in our church’s Cub Scout Pack and Boy Scout Troop, is how to safely hand a knife to another person. The boys don’t earn their “Totin’ Chip” – the special wallet card that allows them to carry a pocketknife – until they learn how to hand an open knife to a fellow Scout handle-first, and not let go of it until the other person says, “Thank you” – indicating he’s got it safely in hand. That’s because a knife is a useful implement, but it’s also dangerous. You’ve got to have a healthy fear of knives before you can use them safely.
Faith is just that sort of tool for living life as a cancer survivor. Most of us aren’t going to be cured, physically, by our faith. For whatever reason, God doles out complete spiritual healing only rarely, and according to no logic we can understand. Yet, if we’ve learned how to take this elegant tool in hand and use it safely - preventing it from slipping and causing further injury - we’ll find ourselves much better-equipped for living through days and years of remission and relapse, of tests and treatments.
Christian faith doesn’t put an end to fear. It does, however, take the natural, human fears we all have and puts them in perspective. Without the inner peace that comes of faith – which we Christians describe as knowing the risen Christ – the ordinary fears of human life can rage out of control, wreaking havoc in our lives, and in the lives of those we love.
The crucial difference comes from the other part of the equation: the “great joy” that counterbalances our very human fears. We can still seek it, even in the midst of cancer. Even a cancer-burdened life is still life, and Christ has promised that, in him, we can live abundantly.
Yesterday's New York Times contained a very sensible column by Paul Krugman. He asks a question that’s really rather obvious – so obvious, in light of our national healthcare-funding woes, it’s escaped the attention of a great many who ought to be asking it:
“Here's my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as "consumers"? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car - and their only complaint is that it isn't commercial enough.
What has gone wrong with us?” – Paul Krugman, “Patients are not Consumers,” New York Times, April 21, 2011.
This is more than a mere quality-of-life question. It’s got big implications for economics, as we continue to struggle through our national healthcare-funding debate:
“Consumer-based" medicine has been a bust everywhere it has been tried. To take the most directly relevant example, Medicare Advantage, which was originally called Medicare + Choice, was supposed to save money; it ended up costing substantially more than traditional Medicare. America has the most ‘consumer-driven’ health care system in the advanced world. It also has by far the highest costs yet provides a quality of care no better than far cheaper systems in other countries.”
The problem is that there are an awful lot of people out there who profess an unquestioning, fundamentalist faith in what economist Adam Smith called, way back in 1759, “the invisible hand” of the market. For him, it was probably just a metaphor, but for his latter-day followers, it’s become a virtual deification of free enterprise. Attached to that invisible hand, in their fantastic imaginings, is a new Olympian god, who effortless regulates human affairs through astute transfers of capital.
That would be of little significance, were not living, breathing human beings mightily affected by such transfers.
That makes it, as Krugman correctly points out, a moral issue.
It seems lymphoma treatment isn’t the only cancer-treatment field that’s rapidly changing. Today I come across an article on my other cancer – thyroid cancer – indicating that one treatment that’s been talked about for me is currently being reconsidered by the experts.
I’ve been hearing all along that, once my thyroid is removed surgically, I’ll probably need to follow up with a single radioactive-iodine treatment. This is a dollop of radioactive material encased in a small pill, that I would swallow several weeks after surgery. Because thyroid tissue thirstily slurps up iodine, if it should happen that there’s any thyroid tissue remaining in my body after the surgery, the radioactive iodine would zap it.
Now, it turns out the radioactive iodine is risky in itself, and is possibly the cause of some secondary cancers. Recent studies indicate that a more nuanced treatment decision now needs to be made, weighing the likelihood that there is indeed any remaining malignant thyroid tissue against the slight – but real – risk of the radioactive iodine running amok and causing another cancer elsewhere.
The American Thyroid Association is now saying that radioactive iodine “should be used selectively and [only] in patients with intermediate and high-risk thyroid tumors.”
So, with a nodule presently at 1.5 centimeters, how’s my tumor classified? I didn’t ask Dr. Boyle about precise staging, so I can’t be sure.
That’s one thing I’ll need to remember to ask the doctor about, as the time of surgery draws near.
In the meantime, it’s Holy Week, and I’ve got a whole lot of other things on my mind. Sermons to write!
Hope, she's come to realize, is “the only word that matters” in her business.
Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.
