Thursday, May 28, 2009

May 28, 2009 - On Not Jumping the Gun

Today I read an online article about prostate cancer – specifically, how some men who get regular PSA tests may end up getting overtreated for the disease.

It’s a situation that’s parallel to my NHL, because of the similar, watch-and-wait treatment protocol.

Man gets PSA test. Test detects a small, almost insignificant presence of cancer. Knowing most prostate cancers are slow-growing, doctor recommends watchful waiting. Patient, who’s just heard the word “cancer” for the first time in a medical diagnosis, flips out, imploring the doctor get rid of the cancer, whatever it takes. Under pressure, doctor initiates treatment – despite the possibility of debilitating side effects and the knowledge that the treatment is likely to be no more effective now than later.

It’s all because of the patient’s panicky reaction to the word, “cancer.”

I know. It’s only human to respond that way. I did, myself, when I was first diagnosed. We’ve been taught to think of cancer as a killer, that must be excised from the body instantly, no matter how difficult that process may be.

You can see this in the way some people use the word “cancer” as metaphor. If someone speaks of “a cancer on the organization,” or something similar, it means the offending member must be drummed out of the corps, post-haste. That’s what we do with cancers, right?

Sometimes, but not always. Not when it’s a slow-growing cancer – like most prostate cancers, or my indolent NHL.

I’m away at a church conference this week, the national meeting of the Presbyterian Association of Stated Clerks. Today, at the breakfast table in the conference center dining hall, a colleague I haven’t seen in a while asks me how I’m doing. I explain the watch-and-wait thing, and she at first assumes I’m in remission. No, I’m not in remission, I correct her. It’s been 3 years since my treatment, but my remission only lasted about 8 months. The cancer’s been back ever since then, but we’ve yet to treat it, because it’s still too small to treat.

She gives me a quizzical look that reveals she clearly doesn’t get it.

I explain to her that my cancer is one that doesn’t – in fact, shouldn’t – be treated immediately (and that this is a tough idea for any of us to wrap our minds around). Doing so will just deplete the number of implements in the doctors’ treatment toolbox, tools that may be needed later when the cancer does get big enough to treat.

After my lengthy explanation, my friend does get it – but, I rather suspect she goes away thinking I’ve got some superhuman reserves of psychological endurance, being able to get up and walk around each day, as I do, with the knowledge there’s untreated cancer inside me.

It’s not that big a deal, though. It really isn’t. Once you get used to the idea that you’ve got an indolent cancer, and understand what that sort of cancer really is, you can function rather well. Sure, there’s a constant, low-level sense of unease about the future, but it is low-level.

You have cancer. You live with it. Somehow, with a little help from your friends, and your God, you get by.

As long as you don’t jump the gun.

Saturday, May 16, 2009

May 16, 2009 - Farrah's Story

It’s hard to believe it’s been a week already since my last blog entry. Life has been overflowing, of late – not so much with rich and wonderful experiences as with the sort of minutiae that distract from the main thing.

Anyway, last night I did manage to take some time to view Farrah’s Story on NBC TV. For several years, Hollywood celebrity Farrah Fawcett has had anal cancer that’s now metastasized to her liver. Her prognosis is not good. For the past couple years, she’s brought a video camera along on most of her medical visits. Her intention, at first, was simply to keep a personal record of the complex medical information the doctors were feeding her, but eventually it occurred to her to make a documentary out of the footage.

This is the program that premiered on NBC last night. As the documentary airs, she’s no longer receiving chemotherapy, but is said to be receiving other anti-cancer drugs. It does seem, sadly, that her doctors have just about run out of options.

The film records Farrah saying, long before she reached this stage in her treatments: “So I say to God – because it is, after all, in his hands – ‘It is seriously time for a miracle.’”

It’s a gritty, realistic documentary. It pulls few punches in displaying the pain and exhaustion that so often go along with aggressive cancer treatments. So eager was Farrah to receive the most cutting-edge treatments that she left the care of her Los Angeles doctors for a time, and flew to Germany. There she had found a surgeon willing to undertake the tricky removal of her anal tumor, as well as another doctor who was willing to directly destroy her liver tumors, one by one, with a painful laser ablation treatment that involved sticking needles directly into her abdomen.

Farrah evidently wanted to show it all: a rather surprising move, for a movie star who’s spent her life carefully managing her public image. “There were things that I thought were too invasive to film,” Farrah’s friend and collaborator Alana Stewart explained, in an interview. “But Farrah said, ‘Film it. This is what cancer is.’”

The treatments seem to have bought her some time, little more. Hers is the story of a cancer survivor who's determined to do everything possible – even pushing the limits of the possible – to aggressively turn back her disease.

Because Farrah Fawcett is who she is – a world-famous celebrity, and a very wealthy woman – she has access to treatment options few other patients can consider. The film portrays her flying back and forth to Germany on a chartered jet, and staying, during the time of her treatments, in a picturesque alpine chalet that looks like it comes straight out of Heidi. Here’s a woman who’s lived her adult life at the pinnacle of privilege, but at the end of the day, she’s like any other cancer patient. Cancer is a great leveler, that way.

Towards the conclusion of the film, Farrah even loses her trademark mane of blonde hair. I found it a strange experience to watch some of her close friends describing what a horrible sacrifice this was for her, as though a coiffure were life itself – but then, I had to remind myself, these are Hollywood people. Their aging faces display the craft of the cosmetic surgeon. For them, physical beauty takes on disproportionate importance. It seems less so for Farrah herself, actually, than for those around her.

In the film, Farrah’s longtime companion Ryan O’Neal pays tribute to her inner beauty – and that’s the impression I’m left with, from this rather roughly-edited, but very realistic film. Farrah’s Story is the tale of a survivor. Whether or not she gets the medical miracle she tells God it’s “seriously time for,” there are miracles aplenty of strength, perseverance, community and love.

Saturday, May 09, 2009

May 9, 2009 - A Most Useless Place?

Dr. Wendy Harpham sent me a link to the blog of Rabbi David Wolpe, who also has non-Hodgkin lymphoma. Several years before that, he had surgery for a brain tumor. Here, he writes about receiving his last Rituxan infusion, ending a two-year follow-up regime after chemotherapy for NHL:

“Recently I had the final infusion. But I was not at all sure that pulling away the safety net was a cause for celebration. My doctor poked his head into the curtained chamber to assure me that he expected a long remission. Kind of him, but what could he say?

Remission is cancer's suspended animation. The renegade cells are poised to return but no one knows when. It could be a month or a decade; for my type of lymphoma (one of the more than thirty varieties of Non-Hodgkin's lymphoma) there is no cure. So I am stuck in what Dr. Seuss – in a book I used to read to my daughter – calls “a most useless place. The Waiting place....’”

A most useless place. That phrase does sum up how it feels, sometimes. Unlike David, I’m out of remission – have been for a couple of years – but there are days when I, too, feel like I’m in suspended animation.

David’s experience is similar to mine, too, in that he is a member of the clergy, serving a congregation:

“I had the strange, surreal experience of hearing my congregants' shock that this could happen to the family of the Rabbi – as though professional piety was a shield against disease. As though God played favorites.

Right before my brain surgery I appeared in front of the congregation and asked them for their patience and their prayers. Three year later I was standing before them, bald. I witnessed the realization in their eyes that there are no guarantees, no protected people. No one is safe.”

No, no one is safe. Yet, that observation ought to be surprising only to those who believe God is some cosmic puppeteer, manipulating the lives and loves and illnesses of us poor, benighted souls who dwell below. Is cancer a thunderbolt, cast down in righteous anger from Olympian heights? I’ve never seen it that way – although I’ve met plenty of people, both inside and outside my church, who fear it may be.

Granted, there are strains within the biblical tradition that portray God that way. God punishes the ten spies who brought back an unfavorable report of the promised land by killing them with plague (Numbers 14:37). God gives the adulterous David and Bathsheba’s infant love-child a fatal illness (2 Samuel 12:15-17). Even worse, God famously afflicts Job with boils, not because he’s an unjust man but simply because God wants to win a debate with the devil.

Yet, before everything is said and done in the Hebrew scriptures, the Lord is portrayed as “merciful and gracious, abounding in steadfast love” (Psalm 103:8). That’s the majority witness. When it comes to the New Testament, of course, God not only sympathizes with human suffering, but personally undergoes it, becoming incarnate as Jesus Christ.

Yet, the ancient images of a capriciously angry God, that dread smiter of sinners, are maddeningly persistent. “What did I do to deserve this?" is the anguished cry we pastors hear again and again, whether spoken or unspoken, standing at the foot of many a hospital bed.

No one is safe. We’re all going to die. Some of us sooner than others. If we’re spared from some fatal catastrophe on the highways, we’re all going to hear some doctor admit to us, someday, “I’m sorry, but there’s nothing more medical science can do for you.” Is this God’s judgment?

The story of Adam and Eve in the Garden suggests it is. Death is, that story suggests, God’s judgment on the entire human race. That may be so, but, unless we toss out all the biblical witnesses to God as patient and merciful, it’s hard to make a case for God micro-managing the entries in our individual medical files. We belong to a race for whom that dark, old lullaby is all too true:

“Hush, little baby, don’t you cry,
for you know your mama is born to die...”

The divine decree of death is meted out to the human race en masse, not on a case-by-case basis.

The fact of death is perhaps the deepest mystery we children of Adam and Eve seek to plumb – as Rabbi David has himself come to realize:

“For now I am just waiting. I am trying to find my own way through this because, inevitably, I will be asked how I did it. Rabbis are supposed to be figures of authority and calm. It was hard enough to reassure my congregation that a fickle universe does not mean that God is absent. That belief does not indemnify me against adversity. That my faith through all this is unshaken. How does one live, Rabbi, is the question my congregants ask, of not so directly. Tell me, Rabbi – it is your job to know.

My answer, I now realize, is: Live as if you are fine, knowing that you are not. Death is the overriding truth of life but it need not be its constant companion. My safety net is gone. I feel, as all people in remission do, that each time I fly my hand may slip from the trapeze. But to live earthbound is to give the cancer more than it deserves.”

The place David and I find ourselves in may feel, at times, like “a most useless place.” On deeper examination – and, viewed through the eye of faith – it turns out to be anything but.

Thursday, May 07, 2009

May 7, 2009 - Microscope-Ready

Good news, today, in the form of a news article about government allocations for medical research. The article in Bloomberg News reports on what one researcher calls “a stunningly large number” of dollars – $10.4 billion of ‘em, to be exact – that will be devoted to curing what ails us. “Breakthrough findings on obesity, AIDS, Alzheimer’s, Parkinson’s and cancer” are on the way, the article predicts.

President Obama has included this amount as part of his $787 billion shot in the arm for the economy. There’s been lots of talk about rebuilding the nation’s crumbling infrastructure through “shovel-ready” projects like bridges and highways. It’s nice to know there are some microscope-ready projects, as well, to benefit those of us with chronic illnesses.

There are some who say that, once you have cancer, never a day goes by that you don’t think about the disease, at least once. I’m pretty sure that’s continued to be true for me, during this extended period of watch-and-wait. Some days I think about it a lot, other days it’s no more than a fleeting thought. Yet the though is always there, if only lurking below the surface.

I would a great thing, indeed, if I didn’t have to think about it anymore.

It would be a great thing, as well, if some additional billions would be used to buy health insurance for those without it – although I suppose that’s coming down the pike soon enough, along with the rest of the President’s healthcare-funding proposal.

Why is this important? Check out this 7-minute video that tells what an impossible fix a hard-working American family can get into when cancer comes knocking at the door:

Quite apart from the humanitarian factor, cleaning up our nation’s broken healthcare-funding system – that leaks dollars like a sieve – will actually strengthen the economy.

Now, that’s the sort of win-win scenario that even a fiscal conservative ought to be able to appreciate.