Monday, January 27, 2014

January 27, 2014 - Never Off-Duty

Today I run across a blog posting by a fellow lymphoma survivor, Ethan Zone. He reflects on how difficult it is for anyone who hasn't walked this particular road to know what it's like to live through months and years of survivorship, following treatment.

Most people, he says, think the battle is over when that blessed word "remission" first falls from our doctor's lips. But that's not so. It's something like a Cold War that only begins after the "hot war" ends:

"The general perception of cancer – especially in this rugged-individualist, pull-yourself-up-by-your-bootstraps country – is that there are winners and losers. We prefer to see it like a football game: you either beat cancer and win the Superbowl; or you lose to cancer, and sayonara, shiny trophy/life! There is no in between. The reality of my situation is that I did everything in my power to beat cancer, and I did. But the cancer came back, and my life got blown apart at the seams all the same. And I think that’s okay, too. There are millions of people out there living with cancer, longing for stability, and functioning with the reality that this horrible disease may come back."

Many of us assemble posses during the active phase of our treatment. Good people present themselves - family and friends - to help us with chores, offer us rides, pray for us, offer encouragement. These are some very special people, whose positive effect on our struggle with the disease is incalculable. Yet, there comes a time - for those of us who do achieve remission - when most of them slip away, with a smile on their faces.

That's as it should be. There are others who need their help more. Yet, few realize that, for the patient, the struggle isn't over. It's only entered a new phase:

"I have come to realize, however, that people tend to join your regiment during the arms race build-up between a cancer diagnosis and the execution of the treatment protocol. But afterwards, once the immediate danger (as they presume it) has passed, they tend to forget all about the 'war,' their shiny 'weapons,' and they slip back into their normal, civilian lives. And my point isn’t that they are thoughtless, because they aren’t. They just don’t know. But those of us who do know don’t forget. The psychological hangover is long and dark. Of course good news deserves a euphoric dance party, but it’s important to remember the post-remission patient because there are dump trucks full of uncertainty and invisible scars that need healing."

I've never been fully sure whether or not I'm in remission. Eight months after my last chemo treatment, in 2006, some signs of returning cancer started showing up in my scans. Dr. Lerner was able to see some low-level recurrence, but he assured me that what I have left is an indolent form of the disease, and the most appropriate response is to "watch and wait." This we did for the next several years, merely noting the new tumors on the scans - until, 2 or 3 years ago, the hot spots stopped showing up altogether. And still we watch and wait, even if there's no longer anything to watch.

Were these just scan anomalies? Or did my out-of-remission cancer simply slip below the radar, where it's still indolently lurking, ready to return someday?

No one can say. It's been more than 7 years, now, since my treatment ended. The old conventional wisdom is that after 5 years of no recurrence, you're "cured." Yet, I've been told that particular "c-word" can never be applied to my situation - because indolent cancers, by definition, are very good at hiding. Sometimes, for long periods of time. Which means you never feel like you're completely out of the woods.

Thanks to Ethan, for describing it so well.

Thursday, January 09, 2014

January 9, 2014 — Who Am I?

Today I read an article by my friend and seminary classmate Kathleen Long Bostrom (“Identity Crisis,” Horizons, The Magazine for Presbyterian Women, January/February 2014). It speaks to where I am right now, in these days of recovery.

Kathy’s writing about what it feels like to take early retirement, for medical reasons. (She’s been dealing with a chronic obstructive lung disease for some years now.) Kathy had been serving as a co-pastor alongside her husband, Greg Bostrom. He continues in the pastoral role, in the same church. She’s now devoting her attention to her part-time writing career (she’s an acclaimed author of religious children’s books).

In my case, no one’s talking about retirement. The breathing difficulties caused by my matched pair of pulmonary emboli are expected to diminish in time. I fully expect to return to full-time pastoral work when that happens — but for now, I’m on temporary disability from my work at the church. With the three hospitalizations I’ve had this fall and winter (the most recent ending on December 28), I’ve had a few setbacks of the two-steps-forward-one-step-back variety.

Back in 2006, when I was receiving chemotherapy for non-Hodgkin lymphoma, I was also dealing with a kind of disability. But, that was different. With a once-every-3-weeks chemo cycle, I could anticipate one week of being out sick, a second week of moderate energy, and a third week of relatively normal functioning. I never did go on full-time disability.

It’s different this time. The blood clots in my lungs restrict my breathing, meaning I get winded very easily — even after the relatively minor effort of climbing a flight of stairs. I’m making progress with my outpatient physical therapy, but it’s slow (especially since each hospitalization has led to some deconditioning, setting me back a few spaces on the recovery gameboard each time).

The nature of pastoral ministry is such that it’s hard to step back from full-time to part-time. As far as the congregation is concerned, you’re either back or you’re not. I’ve received advice from numerous people not to attempt part-time ministry. It’s hard to set reasonable limits. It’s easy for a task-oriented person like me to overwork. Also, the congregation tends to think that, if they see you up in front, leading worship, many will assume that you’re back 100%, even if you’re not.

I asked my pulmonologist, Dr. Gustavo De La Luz, how long it will be before the emboli dissolve, and he said the average is 3 months. I’m coming up on that date at the end of this month, and I have noticed some modest improvement. The last scan I had at the hospital showed one embolism has gotten smaller.  But I’ve also had unusual complications: the big internal bleed I had during my first hospitalization, and two incidents of temporary kidney failure, caused by the CT-scan contrast dye (which my body can evidently no longer tolerate).

The result is that my disability is frustratingly open-ended. No one can predict with any accuracy when I’ll be ready to return to my pastoral duties. Recently, I’ve been advised to fill out the Presbyterian Board of Pensions’ disability paperwork, so that — if I’m still sidelined when I hit the 90-day anniversary of my diagnosis at the end of this month — I can begin collecting a temporary disability pension (which would save the church two-thirds of the salary they’ve graciously continued to pay me).

I learned years ago that, if there’s any advantage to receiving chemotherapy for lymphoma, it’s that the treatment’s progress is tightly regimented. With one treatment every three weeks, there was a predictable “chemo cycle” governing how sick I could be expected to feel.

Not so with this pulmonary embolism thing. The clots will dissolve when they dissolve. No one can predict how long that will take. Nor can anyone predict how fully the lungs will recover after the clots are gone. Some patients find that some of their lung tissue has become “necrotic,” after all that time deprived of oxygen from the bloodstream. That essentially dead lung tissue will never recover. No one can predict how much necrotic tissue there is, nor how it will affect my long-term recovery. The deep-vein thrombosis in my leg (for which I’m being treated with the anticoagulant, Coumadin) also bears careful watching. I’m wary of the possibility of another hematoma, even though I’m on just one anticoagulant rather than two, and I’m being carefully monitored by a hematologist (my oncologist, Dr. Lerner).

During my cancer treatments, I was able to make some modest plans around the ups and downs of the chemo cycle, that’s not possible in this case. I’m living day-to-day, pursuing a recovery of indeterminate speed and duration.

I can vividly remember the experience, on Easter Day, 2006, of looking across the street from my bedroom window, sick as a dog from my most recent chemo treatment, watching the congregation arrive for worship in all their Easter finery. It was a strangely disjointed feeling. It felt unnatural not to be there.

With my present pulmonary difficulties, that’s my experience every day.

Which brings me, at long last, to Kathy’s insightful article. She admits to feeling a certain kind of “identity crisis” as she transitions into early retirement — becoming no longer one of the church’s pastors, but merely the pastor’s wife.

“Who am I,” she writes, “now that I am no longer the pastor? Who are any of us, apart from the labels that define us, that can be cumbersome, even limiting, but that also give us a sense of identity and purpose?”

Musing on the experience of serious illness, she observes how we can “lose our intrinsic identities even further and become ‘a cancer patient,’ rather than ‘Joan, who happens to have cancer.’”

When I was in the hospital, I wore a plastic ID bracelet with my name, my birthdate and a bar code on it. Every time a nurse came in to give me medication, or a technician to draw blood or give me a breathing treatment, I would be asked to repeat my name and birthdate, so the hospital employee could check that information against my bracelet. Then, the person would scan my barcode with a little handheld device. This was for medical-records purposes, but I was also aware that it was related to the hospital’s billing process. It was the medical equivalent of waving a box of Cheerios over the bar-code scanner at the supermarket checkout. Every pill I swallowed, every new bag of IV saline solution, had its price.

In the hospital, the uniformity of my hospital gown and the ubiquitous presence of my ID bracelet proclaimed that my identity, as a patient, was pretty much limited to my medical condition. Pastor, husband, father, friend — all those roles diminished to secondary importance. Name, birthdate, barcode: those were my new identifiers.

Now that I’m home, and my main activity is getting better, it still doesn’t feel all that different. Many of those things I used to do, by which I defined myself, aren't part of my life at the moment. Even with family relationships, things have changed. I no longer do many of the things I’m used to doing as husband and father. Others must do some of those things for me.

Kathy quotes a little poem by theologian and martyr Dietrich Bonhoeffer, “Who Am I?”, which concludes with these words:

Who am I? They mock me, these lonely questions of mine.
Whoever I am, thou knowest, O God, I am thine.

Kathy then goes on to observe: “I am who I have been from the very beginning: I am a child of God. That has never changed. It is who I will always be, even though that identity has gotten lost in the shuffle of my labels. First and foremost, now and always, I am a child of God, which is what we all are, no matter the labels that have stuck to us over the years.”

Maybe that’s the lesson God is teaching me, through this protracted recovery. Ministering to the dying and their families, I've experienced the truth of the old cliché: “No one ever says, on their deathbed, ‘I wish I’d spent more time at the office.’” We're not defined by what we do, but by who God has created us to be.

Kathy’s right. At the end of the day, “child of God” is what we are. All of us.