Wednesday, May 31, 2006

May 30, 2006 - Remission

Today Claire and I journey to Memorial Sloan-Kettering Cancer Center in Manhattan, for our second-opinion consultation with Dr. Carol Portlock, the lymphoma specialist I saw back in January. “Second opinion” may be something of a misnomer in this case, because we’re actually seeing her first this time – although, as before, it’s turning out to be a collaborative process between the two doctors, a team approach.

Getting to the hospital takes some doing. We’re driving, once again - to avoid the logistical difficulty of carrying the large envelopes of CT and PET scan films on train and subway. City traffic turns out to be heavier than it was last time. As we get to the hospital, we find a half-block line of cars waiting to get into the parking garage. After five minutes or so of sitting in that line (which is going nowhere fast), it occurs to me that we don’t both need to be in the car. I get out – the large envelopes of films under my arm – and Claire switches over to the driver’s seat, to finish waiting for a space to open up in the parking garage. I walk into the building, find my way upstairs, and get the films to the receptionist. I'm just five minutes late for our appointment (getting the scans to the Sloan-Kettering staff early is the most important thing, because the entire day’s schedule hangs on their interpretation by some nameless radiologist on the staff).

After check-in, I sit down in the waiting area. Claire joins me a half-hour or so later. We wait for maybe a half-hour longer, before a nurse has me come in for a quick vital-signs check. More waiting, then we’re invited back in again, so a resident (a doctor-in-training) can examine me. We sit in the examining room for maybe half an hour longer, before Dr. Portlock finally comes in – about two hours after my scheduled appointment time. The wait doesn’t really bother us, though, because we’re most concerned that everything be done right. Take your time, O mystery radiologist – what you see in those scans will make a huge difference in my life.

I’ve determined ahead of time that I have four basic questions for Dr. Portlock. I’m calling them, for memory purposes, “the 4 Rs” – remission, radiation, Rituxan and right lung:

Remission: Does the PET scan report indicate that I am, indeed, in remission?

Radiation: Are radiation treatments advisable?

Rituxan: Would a course of maintenance treatments with Rituxan help prevent the cancer’s return?

Right Lung: Earlier scans have flagged a small growth – a “nodular density” – in one of my lungs, as a possible area of concern. The most recent PET scan shows that this area has increased in size since the last scan – although it didn't light up on the scan as any kind of malignancy. I want to be sure to ask the doctor what she thinks this is.

Dr. Portlock accurately sums up the details of my situation. She describes how the chemo treatments have shrunk the abdominal tumor, and how the PET scan has confirmed that only scar tissue remains. Eventually, she says, the mass will get even smaller, collapsing in upon itself.

I ask her my questions...

Remission: YES, she says, the PET scan indicates that I am in remission. (Hooray!)

Radiation: On the question of radiation, her answer is NO. In my case, the possible side-effects of radiation outweigh the advantages. Given the location of the mass, and the fact that (due to my comparatively large body size) I would need a heavy radiation regimen, the side effects would likely be quite severe. Because lymphoma is a systemic – rather than a localized – disorder, radiating what remains of the abdominal tumor could help prevent any relapse in that particular area, but will do nothing for the rest of the lymphatic system. Were I to have a recurrence of cancer, it could happen anywhere in that system – so Dr. Portlock sees no advantage of targeting the spectral remains of my tumor. She recommends that we go into a watch-and-wait mode, and that I be monitored with CT scans every three or four months for a year, then less frequently after that. If there’s a relapse, radiation could be considered at that time, as one treatment option among several.

Rituxan: As for maintenance treatments with Rituxan, Dr. Portlock’s answer is NO. Her view is that long-term treatments with Rituxan would be of uncertain benefit in my situation. Furthermore, there’s a possibility that long-term use of this drug – which seeks out and destroys healthy B cells, as well as cancerous ones – could eventually depress my immune system. In the event of a relapse, she says, I will need a strong immune system, so she wants to use this powerful medicine only when there are clearly malignant cells that need to be targeted.

Right Lung: I ask her about the nodule in my lung, and she says it does not appear, from the PET scan, to be malignant. Even so, she recommends I talk with Dr. Lerner about getting it checked out by a pulmonologist or a thoracic surgeon. If it looks suspicious, it would be possible to do a needle biopsy and find out for sure. Because of the clean PET scan, though, she thinks it is most likely a harmless growth of some kind.

We thank Dr. Portlock and head down for a late lunch in the hospital cafeteria, before fetching the car and heading for home. Claire and I agree that, after all the recent talk about radiation treatments lasting well into the summer, the word “remission” still doesn’t sound quite real to us. If, after talking with Dr. Portlock, Dr. Lerner concurs with this assessment, we’ll begin to breath a sigh of relief at last.

Monday, May 29, 2006

May 28, 2006 - On Our Way Rejoicing

In worship today, Robin mentions my PET Scan results as part of the joys and concerns list, just before the pastoral prayer. Some folks already know this news, from reading this blog; others are hearing it for the first time. The congregation interrupts her with spontaneous applause, and there are lots of kind words of congratulations for me at the church door afterwards.

I appreciate the positive sentiments, of course, but there’s a part of me that’s still hesitant about letting down my guard and truly celebrating this good news. Just a couple of days ago, I was worrying about the part of the CT Scan narrative report that said the abdominal mass is unchanged in size since my third chemo treatment. Now, the PET Scan report is picking up no trace of cancer within that mass at all. (That means there’s probably just scar tissue remaining, which would explain why it hasn’t shrunk further.)

I’m reluctant to let loose and really celebrate because I know I’ve still got some struggles ahead of me. By most accounts, cancer fatigue doesn’t dissipate until several months after the last chemo treatment. Then there are the radiation treatments, that Dr. Lerner told us he’ll probably still recommend, even if the chemo results are good. That means I could still feel pretty lousy for a while, despite my negative scans (“negative,” of course, means positive, in the world of cancer treatment).

So when do cancer survivors finally feel free to celebrate? We’ve all heard the folk wisdom that says, “After five years of clean scans you’re cancer-free.” Well, five years is a long time to wait – but, even so, who knows where that five-year figure came from in the first place? In fact, there’s no universal standard that applies to every form of cancer (which, researchers are learning, is more a large family of disorders than a single ailment). Lymphoma, in particular, is pretty slippery. Some of the slow-growing sub-types of lymphoma – while highly treatable – are now considered to be chronic conditions, about which it’s not reasonable to talk of a cure. My “diffuse mixed large- and small-cell” variety is considered to be an aggressive lymphoma, but actually contains some of both types of cells. Does that mean it’s it one of the curable varieties? I have no idea. My impression has been that its “mixed” label refers to the fact that it’s got both slow-moving and aggressive attributes. I suppose that means we just keep watching it carefully, because anything can happen.

“Rejoice with those who rejoice, weep with those who weep,” says the Apostle Paul (Romans 12:15). Today the congregation is doing exactly what the Bible tells them to do. I wouldn’t expect them to do otherwise. The only problem is, it feels like the people of God are a bit ahead of me on this. I’m not sure if I’ve made it through to the place of rejoicing myself, just yet. Is that because I’m being appropriately cautious, wanting to assemble all the evidence first? Or is it just that it takes time for good news to sink in?

Don’t get me wrong: I’m glad for all the hugs, the hearty handshakes, the encouraging comments. It just feels a little early.

All I’m willing to say right now is that I’m rejoicing at a favorable test result. I’m not ready to claim victory, just yet.

Friday, May 26, 2006

May 26, 2006 - All Clear... For Now

This morning I pick up my PET Scan results from Jersey Shore University Medical Center. Unlike the CT Scan results, which consist of 20 or 25 poster-sized "films" (large transparencies that must be held up against a light source in order to view them), there are just two PET Scan films (small transparencies, about the size of a business letter). The PET Scan is based on a technology (Positron Emission Tomography) that tracks the radioactive glucose the technician injected into my veins. Because the glucose heads directly for areas of rapid metabolism – tumors, in other words – it's the best test for identifying where certain types of cancerous cells are located. I've been told the PET Scan causes malignancies to "light up" on the scan pictures, so they're plainly visible to the trained eye. The CT Scan may portray the body in high resolution, but the cloudy images of the PET Scan tell the doctors what type of tissue it is they're looking at. For that reason, it's incredibly valuable in cancer diagnosis and staging.

Leaving the radiology file room, I ride the elevator downstairs: but before leaving the building, I stop by a visitors' waiting area, sit down, and open the envelope. Along with the PET Scan films – which are interesting to look at, but impossible for an untrained person like me to read – there is a two-page narrative report. Reading quickly through it, I find these words:

"No pathologic anterior abdominal, retroperitoneum, pelvic or inguinal lymphadenopathy is identified. There has been interval resolution of the previously documented pathologic lymphadenopathy involving the mesentery, retroperitoneum, and left inguinal region. There is no scintographic correlate to the mesenteric/retroperitoneal soft tissue mass within the upper abdomen at the level of the renal pelves."

I'm not familiar with all the anatomical terms, but I think I get the gist of it: there's no cancerous tissue visible on this PET Scan. Later, back home, I do some sleuthing on the internet, and puzzle out the meaning of all this medical jargon. "Lymphadenopathy" is the key word: it means "swollen lymph nodes." If there's "no pathologic lymphadenopathy," that means the swollen lymph-node tissue that is visible on the scan shows no sign of being malignant. The "mesentery, retroperitoneum, and left inguinal region" are the areas that were lit up on my first PET Scan, back in November – they are, respectively, an abdominal membrane, the back section of the abdomen and the left groin. On this week's PET Scan, these regions aren't lit up at all. The last sentence refers to the large, abdominal mass that's been the focus of the most attention: it says none of the radioactive tracer shows up inside the mass.

If this is what I think it is – the all-clear signal – there's reason for rejoicing. I try to curb my enthusiasm, though, until I get the high sign from an actual physician (other than the radiologist who read the scan and created all that lovely medical verbiage). The phone call comes about 8:00 p.m.: and while it's not Dr. Lerner on the other end of the line, it is Vanessa, one of the nurses who works in his office. She tells me, in plain English, that the PET Scan shows no sign of cancer in my body. The R-CHOP chemotherapy-and-Rituxan cocktail, it seems, has done its work beautifully.

This is good news indeed: but I know enough, from my background reading about lymphoma, to sound a note of caution. I'm not out of the woods yet. Every lymphoma tumor starts from a single cell. Just because my largest tumor has now shrunk down to scar tissue doesn't mean there aren't any lymphoma cells still roaming around my body. In explaining the need for radiation a few weeks ago, Dr. Lerner told us as much: there could still be a few lymphoma cells lurking in that mass, or elsewhere. The enemy army's been resoundingly defeated: but there could still be a few guerilla fighters hiding out in the back alleys.

Next week is an important one for me. On Tuesday, I'll haul all these films and reports up to Dr. Portlock at Memorial Sloan-Kettering. Then, on Wednesday, I'll sit down with Dr. Lerner and get his take on the situation. If both doctors recommend radiation, as a precautionary measure, the decision will be easy. If there's a difference of opinion, life could get really interesting.

But for now, there's reason for celebration. I could very well be in remission. Time will tell if I truly am.

"I waited patiently for the Lord;
he inclined to me and heard my cry.
He drew me up from the desolate pit,
out of the miry bog,
and set my feet upon a rock,
making my steps secure.
He put a new song in my mouth,
a song of praise to our God."

– Psalm 40:1-3a

May 25, 2006 - Tainted?

Today I go to a luncheon sponsored by the pastoral-care department at our local hospital, Ocean Medical Center. The topic is organ donations, and the guest speaker is a representative from The Sharing Network, the regional organization that coordinates organ donations from patients in New Jersey hospitals.

I’ve always been a backer of organ donations. Having known a few people who had to wait years to receive compatible organs for transplant, I’ve tried to spread the word, encouraging church members to fill out organ donor cards.

I’ve always been a backer of blood drives as well. There was a time when I was a regular donor (my type is O-negative, one of the scarcest), but about ten years ago the Red Cross abruptly stopped accepting my blood. Previously, they used to call me every couple of months and ask me to donate, but then they dropped me like a hot potato. The reason is - are you ready for this? - Mad Cow Disease.

I’ve never, to my knowledge, been exposed to Mad Cow Disease, nor have I known anyone who has. I did, however, live in Scotland for just over nine months in 1982-83, and that was enough to put me on the blood-donor blacklist for good. Theoretically – along with every man, woman and child in the British Isles – I could have been exposed through eating tainted beef, and that’s evidently enough for the American Red Cross. (The Brits, of course, have no such exclusion – but what are they going to do, shut down blood donations for the entire country?)

I always had a secret hope that the Red Cross would lift that nitpicky exclusion, and start accepting my blood again. It’s not that I enjoyed getting stuck with needles; it was the good feeling I got out of being a donor, of giving something back.

Today I learned that, in all likelihood, the possibility of my being an organ donor is probably out, as well. Not that I was looking forward to being an organ donor (the principal qualification, after all, is being dead); but, I used to get a good feeling from carrying that organ-donor card around in my wallet.

The reason I’m on the blacklist, of course, is my lymphoma. I’m tainted. Even if I go into remission and stay there the rest of my life, I’ll always be a cancer survivor. And most cancer survivors are excluded from giving organs or tissue samples, or even blood.

Should I don a burlap robe, tie a cowbell around my neck, and walk around shouting, “Unclean!”? That’s a little like how I feel, anyway – as my cancer has robbed me of this small opportunity to be a good citizen.

If any of you reading this can fill out an organ donor card, but haven’t, why not do so today? Just visit the New Jersey Sharing Network website, or – if you live in another state – contact your local hospital to find out what agency works with them. It will make you feel good – and me as well, for it will mean you’re taking my place.

"For you were bought with a price; therefore glorify God in your body."

- 1 Corinthians 6:20

Thursday, May 25, 2006

May 24, 2006 - PET Scan, Redux

Bright and early at 7:00 a.m., I arrive at the outpatient department of Jersey Shore University Medical Center, for my PET Scan. Standing there at the registration desk, with my large envelope of CT Scan films under my arm, I suddenly remember that I’ve forgotten to bring my prescription script. That’s kind of like showing up at the airport without your ticket. Early-morning brain freeze.

The round-trip back from Jersey Shore to our home is about 45 minutes, I think to myself. If I have to go back and fetch my script, it could set back the whole day’s schedule of PET Scans (knowing how expensive these scans are, that delay could be a really big deal).

Fortunately, after a few minutes of shuffling through various files, the clerk at the registration desk saves the day. It seems Dr. Lerner’s office faxed over a copy of the script a couple of weeks ago, as they booked the scan for me. Feeling much relieved, I move on to the radiology waiting area.

A technician comes and gets me, and ushers me down the hall and onto the trailer where the traveling PET Scan machine is housed (it will move on to another hospital tomorrow). The procedure is much the same as my last PET Scan, back on November 16th. A shot of radioactive glucose into my arm, a half-hour wait, then I take my place on the narrow, sliding table pointing into the aperture of the large, donut-shaped machine.

I lie on my back with my hands extended over my head – an uncomfortable position. With a low, whirring sound, I slide forward, feet first, into the scanner. I start out all the way in, with the top of the scanner just inches from my nose. Although I’m not especially claustrophobic, I find it easier to keep my eyes closed for this part.

After a few nearly-silent minutes of scanning, the machine slides me out a bit, head first, and pauses for another few minutes of scanning. After this interval, I slide out a little more, then I’m able – to my relief – to move my arms down and cross my hands on my chest. From this position, I can twist my neck and look over at a small, computer-type screen on the side of the scanner. Moments later, after the scan has re-commenced, I notice a message appearing in glowing letters, next to a flashing orange light: “Transmission source extended, remove non-essential personnel.” This evidently refers to whatever source of radiation makes the scanner work. I suppose I’m the only essential personnel here, right now (the technicians are back in their little room, safe behind a lead screen, no doubt). On the PET Scan trailer, "essential personnel" have the privilege of getting zapped with radiation. Fun.

The whole procedure – including registration and the wait time while the radioactive glucose makes its way through my body – takes about two hours, and is not unpleasant (except for the arms-over-the-head posture). I’m back home by mid-morning.

I spend some time today, off and on, thinking about something I just read on the narrative report from last week’s CT Scans – the ones I carried up to Jersey Shore today. Comparing this most recent scan to my prior scan of March 13th, the report reads: “Again noted is the spiculated retroperitoneal mass located at the level of each renal hilum. It is unchanged in size and continues to measure about 7cm in diameter. Additional small tiny retroperitoneal lymph nodes are also seen.”

I suppose this must be the mass in my abdomen, that’s been the principal target of the chemotherapy treatments – but, not knowing the medical terminology, I can’t be sure. After some hunting around on the internet, I figure out that “spiculated” means “starburst-shaped.” “Retroperitoneal,” I know, means “towards the back of the abdomen.” “Renal” means having to do with the kidneys. “Hilum,” I discover, is the place where a duct or blood vessel enters an organ (in this case, the kidney).

Is this “the mass” we’ve been so concerned about? (It would seem so; I can’t think what else it could be.) If so, what are the implications of it being “unchanged in size,” after three additional chemo treatments? As of the last prior CT Scan, following chemo treatments 1, 2 and 3, the abdominal mass had shrunk by 50%. Is this most recent report saying it hasn’t shrunk any further, over the period of time covered by chemo treatments 4, 5 and 6? If so, is that significant? Or is this narrative report speaking of something else altogether? Too many questions, not enough answers.

Dr. Lerner warned us, earlier, that the mass won’t completely disappear, but will rather shrink down to the point where only scar tissue remains. Does the 7-cm width mean it’s now only scar tissue, or does it mean the chemo has somehow failed to shrink it further? The PET Scan results – with their ability to highlight “hot spots” of fast-growing tissue that are likely to be malignancies – may be just what we need, before anyone can say for sure.

I don’t know whether or not I’ll get a phone call from Dr. Lerner in the next day or so, interpreting the CT scan results (although I suppose he would have called me by now, if he were going to). Maybe he’s waiting for the PET Scan results before phoning me – or maybe he’s just waiting for our appointment on the 31st, when he'll explain it all, face-to-face.

Until now, I’ve been content to just sit and wait for whatever news is going to come. Yet, having read the cryptic, dispassionate jottings of the radiologist, I’m eager, now, to have some explanation of what’s going on inside me – a description of not only what the CT Scan revealed, but what the full implications are.

It’s at times like this that we “health-care consumers” earn our more traditional label: patients.

Wednesday, May 24, 2006

May 23, 2006 - Presbytery

This evening I go to church – not Point Pleasant Presbyterian, where I’m pastor, but the church of which I’m a member.

I’m speaking of the Presbytery of Monmouth: the forty-six Presbyterian churches here in central New Jersey that form a regional administrative unit. (Well, maybe it’s not a congregation, technically speaking, but it is the part of the church in which we Presbyterian ministers have our membership.)

Presbytery meetings, in our denomination, are composed of equal numbers of ministers and elders. Tonight we meet at the First Presbyterian Church of Hightstown, near Princeton.

It doesn’t feel much like a worshiping congregation, of course – most of the meeting is devoted to legislative-type actions, governed by Robert’s Rules of Order – but we do begin with worship.

First-time visitors to presbytery typically remark on the quality of the hymn-singing, which far surpasses that of local congregations (no surprise, since this “congregation” is composed of ministers and very active church members – we know those hymns through and through).

Instead of having coffee and cake after everything’s finished, as local congregations do, we gather for fellowship as we arrive, before things get under way. It’s kind of like going out to dinner and having dessert first.

This is my first public appearance among my colleagues in all my bald, post-chemo glory. (Well, maybe “bald” isn’t the right word, because I defied expectations, and never did lose all my hair – and what I did lose is only just starting to grow back in again.) My appearance is much altered – I lost my beard as well as most of my head hair – but most people seem to recognize me anyway. There are lots of warm greetings and encouraging words.

“You’re looking good,” I hear, over and over. Well, I sincerely doubt that – but I take such expressions in the kind spirit in which they’re meant. It sort of reminds me of that old Billy Crystal line, when he’s in his “Fernando” persona: “You look MAH-velous!” It also reminds me of something Bill Cosby sometimes says in his standup comedy routines: how, the older he gets, the more often he hears his kids say, “You look good, Dad.” (Cosby’s enough of a realist to know that, at his age, “looking good” is a relative term).

I run into Steve, and thank him again for the time he and his wife, Cindy (an NHL survivor) spent with Claire and me, early on. I smile at David (another NHL survivor), who did much the same for me in a one-on-one conversation. Gary comes up to me with a big smile, and promises to come down to Point Pleasant this summer with his wife Ella, and take Claire and me out to dinner. Sue, having read in my blog about physical therapy, surprises me with a small gift: a book of stretching exercises. It’s all good.

The Presbyterian Church (U.S.A.), like many mainline Protestant denominations, is experiencing a certain amount of ongoing conflict, as we’re rocked by the ecclesiastical equivalent of the red-state vs. blue-state “culture wars” that are dividing America. Sometimes our debates get rather heated. Over coffee and cookies in a church fellowship hall, though, all that’s put aside. I suppose it’s the concrete living-out of the old Reformed doctrine of “the perseverance of the church.”

Yes, I think we Presbyterians will make it, after all.

May 22, 2006 - Elders and Deacons Step Up

This evening, Claire and I walk across the street to another one of our church’s bi-monthly healing services (these are on the second and fourth Mondays of each month, at 7:30). While we’ve offered healing services occasionally in the past, this year marks our first attempt at instituting such a service on a regular basis.

It’s a brief, low-key service, loosely based on the healing services of Scotland’s Iona Community. Robin, our associate pastor, was instrumental in the overall planning. Now that we’ve got our act together, elders and deacons from the church have pretty much taken over the leadership of these services – which is something I’m very glad to see.

It does a pastor’s heart good when church members step up and take on responsibilities such as this. It makes me feel like the concept of the priesthood of all believers is actually getting through to people.

It’s becoming a familiar routine by now: some brief prayers and readings, followed by a time when worshipers can come forward, if they wish, and kneel for prayer and the laying on of hands. Nothing is said about why, exactly, particular individuals may be “standing in the need of prayer” – as the old gospel hymn puts it. Folks just step up, kneel down, and the people of God gather ‘round to administer this ancient sign. It’s a moving and intimate moment.

It’s all over in less than a half-hour. We go on our way feeling touched by the love of others, and of God.

Monday, May 22, 2006

May 21, 2006 - Back in the Pulpit

Today, at each of our two worship services, I preach a sermon – my first in many weeks. At some future date, I may preach about my experiences as a cancer survivor, but today it seems more important to me to simply preach an ordinary sermon. I decide to speak about the novel and recently-released film, The Da Vinci Code (I just read the book, but haven't yet seen the movie).

I get lots of positive comments about it at the church door. This phenomenally-popular, but controversial, book seems to have struck a chord in some members of the church, as it has in the general population. As a suspense novel, it’s a real page-turner, but it’s filled with spurious, poorly-documented historical claims that have caused some to question their faith. Folks seem glad that I've finally addressed the topic directly.

My sermon manuscript may be found HERE.

Afterwards, a number of church members come up and tell me how good they think I look, and how they can see that my hair is beginning to grow back in. One of them even remarks that the prednisone-induced roundness of my face – the feature I sometimes call my "Charlie Brown face" – seems to have diminished a bit. I'm not sure that's true just yet, but it could be.

I'm still within the usual, three-week recovery period following my sixth and final chemotherapy treatment, but I feel stronger now than I did at this stage in my earlier treatments. I think it's psychological: I'm done with chemo now, and I know it. That fact alone is enough to give me a psychological boost.

In the early evening, after supper, Claire and I go for a walk around the neighborhood. I feel pretty tired by the time we've gone a couple blocks, but we press on. My physical therapist has encouraged me to walk.

I'm actually on a hiatus from physical therapy for a few weeks. My medical insurance has authorized a maximum of 25 sessions for the year – of which I've already used 10. Not knowing what sort of side effects I'm likely to experience from the radiation treatments, it seems wise (to my therapist and myself) to suspend the PT sessions for a while, and start them up again once I'm several weeks into the radiation treatments. That way, I'll be able to maximize their benefit, at a time when I'm most likely to need the help.

As with so many aspects of medical treatment these days, it's all about the insurance. I'm just thankful to have the approvals I've already received – because the PT exercises really have been helping.

It looks like more walks around the neighborhood, or on the Boardwalk, are ahead of me...

Thursday, May 18, 2006

May 18, 2006 - With New Eyes

Today I came across this prayer (or maybe it’s a poem?). In any event, it expresses much about how I’m looking at the world these days...

"Living with Cancer"

Thank you for giving me a wake-up call:
to look at the world with new eyes,
to live NOW –
not stuck in the past,
not fretting away for an unknown and unknowable future.
Thank you for giving me the chance to look at life afresh.
I know to trust you and not to worry:
to live fully and value each precious moment,
to cherish each part of your creation,
to seek you in each person I meet,
to live with joy,
which I have too often denied.
Thank you for blessing me.

- Zam Walker Coleman, a member of the Iona Community; from Growing Hope: Daily Readings, Neal Paynter, ed. (Glasgow: Wild Goose Publications, 2006)

“Thank you for blessing me,” writes the poet – a curious thing to say, for someone reflecting on an experience with cancer. What about cancer could possibly be construed as a blessing?

Well, I wouldn’t want to say cancer could ever be a blessing, myself. It’s anything but. Yet, there are certain things that tag along with a serious illness – hitchhikers, as it were – that are certainly worth the occasional, whispered prayer of thanksgiving. Like the wake-up call of which the poet speaks: that sharpened perception of the things that are most important in life. Or the love and caring of family and friends, shared so generously and profusely. Or the knowledge of self that comes of attacking daily challenges, and mastering them. Or the presence of God, sensed in healing prayers offered by a caring church.

No, cancer’s never a blessing. But God’s presence in the midst of trial and heartache certainly is.

“I am about to do a new thing;
now it springs forth, do you not perceive it?
I will make a way in the wilderness
and rivers in the desert.”

- Isaiah 43:19

Tuesday, May 16, 2006

May 15, 2006 - Eye of the Hurricane?

It’s good to be done with chemo. With each day that passes, I start to feel a little more normal.

I’ve experienced this before, of course, in previous 3-week chemo cycles: as week 2 rolled into week 3 (the week our friends Don and Charlotte learned, when he was undergoing his chemo for NHL, to call “Party Week”), I could begin to keep something resembling a normal schedule. But always it was short-lived. Always I knew that the day of the IV drips would return, and for a week or so after that I’d be laid low by side-effects.

It’s different now. This time, Party Week will stretch on beyond that third Wednesday. While everything I’ve read about cancer fatigue says it takes many months to fully dissipate, at least I should be able to look forward to slow, incremental improvement – at least until I begin my radiation treatments. Yet even with those, everything Dr. Lerner and others have told me suggests that most people find that radiation’s side effects are not as severe as those associated with chemo.

Right now, I find myself living through a brief, diagnostic interlude. Today I go to Ocean Medical Center for my four CT scans – neck, chest, abdomen and pelvis – and everything goes smoothly with that procedure. No results yet, of course – I’ve learned that the technicians can’t tell you anything on the spot. It will take several days, at least, for the radiologist to read the images – and, if past experience is any guide, Dr. Lerner will phone me as soon as he knows anything. Next Wednesday is my PET scan, which will tell us even more about what “hot spots,” if any, may remain in my abdomen – areas of fast-growing cells that are likely to be malignancies.

As I cast around for a metaphor to describe these in-between days, I’m reminded of the eye of a hurricane. I’ve never lived through a direct hit from a hurricane (the north-south expanse of the Jersey Shore is parallel to most Atlantic storm tracks, so we tend to get near-misses), but I’ve read descriptions written by survivors. I’ve heard the hurricane’s eye described as a time of stillness, of eerie silence – and even, in very large storm systems, of reassuring intervals of sunlight. Then, inevitably, the far side of the circular storm passes over, and the howling winds and torrential rains start up again.

This brief season between chemotherapy and radiation is like the eye of the hurricane. While I’m waiting for the scan results, I get a bit of a breather. With hurricanes, they say the trailing edge of the storm is typically not as strong as the leading edge – though it still packs a wallop – so, maybe that’s similar to the somewhat weaker side-effects of radiation.

I can’t say that I’m able to enjoy this time – knowing that the other side of the storm is going to catch up with me eventually – but at least I can rest up a bit.

Friday, May 12, 2006

May 12, 2006 - Walked By the Dog

About 8:00 this evening, I look up from my tedious proofreading work and see a dog dancing. She's our dog, Hera – a Shetland Sheepdog, or Sheltie. This little dance she does is something imprinted deep in her genes. Her ancestors used to do it to round up the sheep, dancing along in ever-tightening circles until they finally had the dumb beasts where they – and their shepherd masters – wanted them. Hera sometimes does this little dance with our three cats, which is highly amusing – although not very effective, since "herding cats" is a classic definition of futility.

Tonight, I think she's herding me. I've been sitting for way too long. It's time to get out, out into the night.

And what a night it is! It's one of those cool, crisp spring nights, that follows a day warmer than most. Deep in the summer, a night like this would be equally lovely, but the heat and humidity would still be hanging on, oppressively. Tonight is different. Tonight, conditions are absolutely perfect for a walk around the block, dragged along by a loopy dog who's eager to sniff in the grass and at the foot of telephone poles for pheromones left by her fellow canines.

This night was out here, waiting for me, all along. And I nearly missed it. Thank you, Hera, for seeing to my mental health.

In Thornton Wilder's play, Our Town, the ghost of Emily Webb – a young woman who has died tragically young – pauses to visit her hometown of Grover's Corners, New Hampshire one last time before she moves on to the afterlife. It's time for her to go, she knows, but Emily lingers, turning around for one final look. "Oh, earth," she says, drinking it all in, "you're too wonderful for anybody to realize you!"

Emily turns, then, to the Stage Manager – that all-knowing character in Wilder's play who serves as a sort of narrator. She asks him, through her tears, "Do any human beings ever realize life while they live it? Every, every minute?"

"No," replies the Stage Manager. "The saints and poets, maybe – they do, some."

Saints and poets and Sheltie dogs – and the grateful people they drag along with them.

Thursday, May 11, 2006

May 10, 2006 - Safe House

This evening I find my way to a safe house of the Cancer Underground.

For some time, I've been aware of a local non-profit organization called the Cancer Concern Center. It was founded by a couple of cancer survivors, who wanted to provide a place for people with cancer to gather and receive various supportive services.

One of the things the Cancer Concern Center offers is support groups, and it's into one of these weekly meetings that I walk this evening. The Center's very basic office set-up consists of three rooms. The outer room is equipped with a receptionist's desk, literature racks and such. Just off it is a small kitchen. The inner room is furnished like a comfortable living room in someone's home, with space for about ten people to sit on upholstered chairs and sofas.

That's about as many as are here tonight. Except for one other man, the group is all women (no surprise there – a lot of us guys have a hard time getting beyond the Lone Ranger thing). I'm the only first-timer present this evening. The others all seem to know each other well.

One member of the group is serving as an informal convener. She opens the place up, puts some water on for tea, and tells us when to begin and end. Once those parameters are set, it's pretty much free-form. Someone suggests that, since I'm a newcomer, the others ought to share their cancer stories, after which I'll be called upon to do the same. And that, pretty much, is the agenda for the evening – with frequent interruptions for comments, questions, even side-conversations. (I learn, later, that the Center's Tuesday-noon support group is more structured, with a clinical social worker offering a more directive leadership style; tonight's group is a bit chaotic, but displays a warm and affirming spirit.)

Nothing is said beforehand about confidentiality – or any other group guidelines, for that matter – but I assume this has to be an important value. For that reason, I won't share any details here of individual stories, except in the most general terms.

Some of the group members, like myself, are actively receiving treatment. Others are in remission. Some are looking pretty strong and healthy, while others are visibly sick or in pain. A variety of cancers are represented – some highly treatable, others less so. It's a cross-section of the cancer world.

I'm impressed by the open, accepting nature of the group. Coming for the first time into any other new group of people, I could expect to feel like an outsider for a while – but not with this crowd. I've already met the membership requirement: I've got cancer.

A few minutes into the meeting, a minor bump in the road arises. It's something all ministers, priests and rabbis have learned to anticipate, as we stick our heads up in purely secular settings like this one.

Some people get a bit flummoxed as soon as they discover there's a member of the clergy in their midst. I've learned to anticipate this sort of double-take at events like wedding receptions, for example. Striking up a casual conversation with a fellow wedding guest – perhaps while waiting in line at the bar – the subject of my occupation may come up. As I respond, saying I'm a minister, I can almost hear the cerebral gears grinding. My conversation partner mentally rewinds the tape of the past few minutes, frantically checking for forbidden words he or she may have uttered. Some people, it seems, really do think we minister-types are the profanity police – although the reality is, we've got far more important things to do than get flustered at four-letter words.

Something similar happens to me this evening. When I'm asked what I do for a living, I reply that I'm the pastor of the local Presbyterian Church. The response around the circle is generally positive, but there's also some nervous laughter and disclaimers about this group being pretty frank in its language. It seems the conversation gets rather earthy at times – as is perfectly natural, when topics of conversation cover subjects like mastectomies and testicular cancer and certain intestinal side-effects of radiation. Don't hold back on my account, I tell them – and I hope they believe me. Even if I did have a passion for policing people's language (and I don't), I haven't come here tonight as a minister. I've come as a fellow cancer survivor.

Ministry is a strange occupation. Some have likened it to a third sex. People welcome us into their lives at moments of great pain and intimacy, but then at other times they hold us at arms' length. For some, we symbolize love and acceptance, while for others we call to mind intolerance and judgmentalism. I've been doing this long enough to realize that such responses have nothing to do with me, personally. They go with the territory. So I let it pass, and hope that this is the last I'll hear anyone refer to the tender sensibilities of the clergy.

I feel an instant point of connection with the details of the group members' stories. We swap tales of chemotherapy side-effects, doctor's appointments, and ways to maintain balance in work and family life. I learn that Dr. Lerner and Dr. Kaufman are both held in high regard. We laugh about funny things that have happened to us in radiology suites and waiting rooms. When someone speaks of pain – emotional or physical – there's a respectful, attentive silence, followed by words of encouragement. These are people who can accept the reality of pain, without feeling the need to minimize it or explain it away: and that's a rare and wonderful thing.

I think I'll come back.

"Bear one another's burdens, and in this way you will fulfill the law of Christ."
– Galatians 6:2

Tuesday, May 09, 2006

May 9, 2006 - A Look Ahead

Today I’m looking at my calendar (well, my Palm Treo PDA), reviewing some important dates that are coming up. In the past day or two, I’ve made some appointments for tests and doctor’s visits that will have a major impact on what the next several months of treatment will be like for me.

This coming Monday, May 15th, at Ocean Medical Center, I’m going to have a whole raft of CT scans: of the neck, chest, abdomen and pelvis. On the following Wednesday, May 24th, at Jersey Shore University Medical Center, I’ll be having another PET scan. The purpose of all these tests is to assess the size of the malignancies, particularly the bulky tumor in my abdomen. The CT scan I had following my third treatment revealed the good news that the tumor had shrunk by 50%. Here’s hoping that rate of progress has continued.

On Tuesday, May 30th, I’ll scoop up the films and reports from all those tests and make another trip to Memorial Sloan-Kettering Cancer Center in New York City. There I’ll have a second-opinion consultation with Dr. Carol Portlock, the internationally-known lymphoma specialist who provided a second opinion at the time of my diagnosis and staging.

The next day, Wednesday, May 31st, I’ll meet again with Dr. Lerner. We’ll discuss Dr. Portlock’s recommendations, and I’ll learn more details about the radiation treatments that will probably begin soon after. Dr. Lerner has estimated, based on his experience with other patients, that I’ll probably receive these five days a week for four or five weeks (each treatment, he tells me, takes mere minutes, and is something like going for an x-ray). He’ll be referring me to a radiation oncologist – probably Dr. Nathan Kaufman of Ocean Medical Center – who will work out the particulars of my treatments under Dr. Lerner’s overall direction.

Ever since January 18th, the day of my first chemo treatment, I’ve been doggedly shuffling through repeated three-week cycles of the R-CHOP chemotherapy regimen. It’s given my life a certain grim predictability: one lap after another, a slow-motion walk around the oval racecourse. Now, at last, the end of my sixth and final lap is in sight. My treatment journey will continue, but not on this particular track. The tests and medical appointments of the next few weeks will reveal when and where the next phase of my treatment journey will take place – and even what sort of journey it will be.

May 8, 2006 - Baby Steps

Today I have physical therapy: the first appointment I’ve had (or at least the first one I’ve completed) since my last chemo treatment. Lori, my therapist, invites me back into the exercise room, and sets me to work.

I soon discover there’s a disjunction between my mind and my body with respect to these exercises. One of them, for example, has me standing between a set of parallel bars and stepping up onto a four- or five-inch-high plastic step and back down again (repeat ten times).

Easy, right? Not so. I look at that little step and feel sure this can’t be the right exercise for me – maybe for someone recovering from an orthopedic procedure like a hip replacement, but not for me. But then I start doing it, and it surprises me how soon I’m panting for breath. Ten steps up and down on the right leg, followed by ten on the left, and I’m ready to sit down and take a breather.

What’s happened to me? Where has my physical stamina gone?

Chemotherapy is what’s happened to me. It’s amazing how quickly fatigue exerts its toll, after those powerful drugs have been racing through the body for a few months on their search-and-destroy mission.

It leaves me feeling vaguely guilty. It would be one thing if I’d just had a knee operation and had to spend a few weeks doing step-up exercises like this, to regain a little flexibility. But they’ve got me doing this because I’m out of breath. Forty-nine-year-old guys aren’t supposed to get winded from climbing the equivalent of a short flight of stairs. The old, judgmental tapes start playing in my head: See – that’s what you get for playing hooky from the fitness center for so long! You’ve really let yourself go, haven’t you?

The physical-therapy exercises look like they ought to be child’s play – and, for a normal, healthy person they would be – but for me they’re not. I need to keep reminding myself that I’m not a healthy person right now. The fatigue I’m feeling is a real medical condition. It’s a side-effect of the medicine, perhaps even of the cancer itself.

This is a time for baby steps. Just put one foot in front of the other. Take it slow. You’ll get there...

Sunday, May 07, 2006

May 6, 2006 - Life, Interrupted

The psychology of this sixth and final chemotherapy treatment is a bit different for me. I know it’s the last of my treatments, but I’m feeling impatient with the whole process, eager to have it over and done with. The chemo side effects, as they start to rise up this time around, are more annoying to me than anything else. I want to just shake them off and go about my daily business, but I can’t.

This morning, Ania is signed up to take her SAT college entrance exams, and Claire has got to go help with a conference her hospice program is putting on, so I volunteer to drive Ania and her friend Jordan across the river to Manasquan High School, where the test is being given. It’s a ritual most college-bound students in America have to go through, a rite of passage. I’m glad I feel well enough to drive the two girls over to the exam, hopefully providing a little parental support along the way. By the time midday rolls around and I get the phone call to come pick them up, however, the fatigue is really closing in, and I find the short excursion a bit wearing. After bringing them back, I collapse on the couch at home, and a little while later go upstairs and sleep away the rest of the afternoon.

I had hoped, this afternoon or this evening, to have the strength to make it to a funeral home in my hometown of Toms River (a half-hour drive from here) for the visiting hours for a special friend who died on Monday. Jane Van Dyke was the widow of Ansley Van Dyke, my home-church pastor for all the years I was growing up. Van and Jane were not only mentors to Claire and me, but were exceptionally kind and encouraging to us as we began our journey to ministry. After seminary studies at Princeton and a year of postgraduate work at St. Andrews University, in Scotland, I served for a time as assistant pastor of the Presbyterian Church of Toms River. Claire and I were over at the Van Dyke home with the rest of the church staff for dinner once a week, and Jane always made us feel especially welcome.

But alas, for me this gathering with special friends is not to be – and probably not tomorrow evening’s funeral service, either. There’s just no way I can make it. The spirit is willing, but the flesh is weak. Claire goes down for the evening visiting hours without me, and gives the family my regrets.

If there’s any comfort in my situation right now, it’s that this is the end of the chemo. Radiation will bring its own, as-yet-unknown side effects, of course – but I’ve been told they’re not as severe. I’m feeling profoundly tired of dealing with a life interrupted.

For now, I watch and wait:

“ soul waits for the Lord
more than those who watch for the morning,
more than those who watch for the morning.”

- Psalm 130:6

May 5, 2006 - Cinco de Mayo at the Oncologist's

On this Friday morning, my mission is to pick up my Neulasta prescription from our local pharmacy – but it turns out to be not so easy as I’d thought. On Wednesday afternoon, Dr. Lerner’s office had immediately phoned in my prescription, but when Claire called on Thursday to check on it, she learned that the medicine had to be special-ordered and would take a day or so to come in. The pharmacy staff advised us to call back this morning, which I do – only to learn that the delivery has been further delayed, and will not be in until 1:00 p.m.

Neulasta is supposed to be administered 24 hours after chemotherapy, in order to begin its important work of boosting the white blood-cell count that the chemo drugs tend to suppress. I’m scheduled for a 9:40 a.m. appointment for my shot – a good bit longer than 24 hours already – but now I have to call the office and ask them to push it back a few hours longer. They tell me to drive right over with my Neulasta, as soon as I get it. (I’m aware, of course, that there’s plenty of the stuff sitting in the refrigerator in the doctor’s office, but they can’t give it to me, due to the insurance company’s changed reimbursement policies.)

When I get to the pharmacy, things seem to go smoothly enough. I pick up the prescription bag, sign for it, and hand over my $100 co-pay via debit card. As I walk away from the pharmacy counter, though, I glance into the bag and do a double-take. What I have in my hands is not Neulasta at all, but Neupogen – the older, less-expensive medicine that Dr. Lerner’s office could still have given me directly under Blue Cross/Blue Shield’s coverage guidelines (but which requires a weeklong series of daily shots).

I go right back to the counter, and point out the error. One of the pharmacy staff shows me their order slip (written down by whomever took the call from the doctor’s office) that clearly says “Neupogen” – though who can say whose error it was, the person making the call or the person receiving it? Another clerk gets on the phone to Dr. Lerner’s office, and confirms that it’s indeed Neulasta I’m supposed to have. They invite me to be seated, while I ponder the implications of all this. What if it takes another day or so for the Neulasta to be delivered? Are there health implications to delaying the injection even longer than I already have? Maybe I’ll have to submit to the daily Neupogen shots after all.

Fifteen minutes or so later, the pharmacy clerk calls me to the counter again and gives me my Neulasta. They had it in stock all along – it was the Neupogen (the medicine I didn’t need) that had to be special-ordered.

I drive over to Dr. Lerner’s office, and find that the staff is celebrating Cinco de Mayo, the Mexican patriotic holiday. “Happy Cinco de Mayo!” proclaims a string of cardboard letters, hung on the waiting-room wall. The nurses are wearing colorful ponchos and sombreros, and – for some inscrutable reason – distributing plastic leis (the Hawaiian flower garland). A sombreroed nurse, a set of maracas stuck into the waistband of her scrubs and a twirly mustache painted onto her upper lip with mascara, loops a couple of leis around my neck. The nurse, who knows my name is Carlos, seems to think this will mean something special to me. She probably has no idea I have no Hispanic ancestry (I’m mostly Scottish and Swedish – my first name is a fluke, that I’ve had to spend a lifetime explaining to people).

The staff here do their best to cultivate a cheery atmosphere. Most patients I’ve seen in the waiting room on past visits are elderly. Some of them, weak and infirm, ride in wheelchairs or lean on canes. There are often trays of cookies and brownies to pass around (provided by pharmaceutical salespeople, I’d guess) – chemotherapy recipients aren’t supposed to be counting calories or fat grams. Cinco de Mayo may be a bit of a stretch for this crowd – nobody on the staff or in the waiting room looks to be remotely Hispanic – but hey, it’s a holiday, so why not celebrate?

Back in the nurses’ room, where I go to receive my injection, there are more sombreros. A pinãta is hanging from one of the IV-bag hooks on the ceiling. Even Dr. Lerner is wearing a sombrero. It’s all very cheery, but a bit surreal all the same.

Surreal is the word for it – not only the sombreros in the doctor’s office, but my roundabout journey to receiving my Neulasta shot. Olé!