January 6, 2006 - Everything Changes

Late this afternoon, I am sitting behind my desk at the church, when I receive a phone call from Dr. Lerner that changes everything.

He tells me he has just received a call from Dr. Portlock, who has informed him that the pathologists at Sloan-Kettering have been conducting a more in-depth analysis of my biopsy slides. The experts have changed their minds about the type of cancer I have.

It's still non-Hodgkin lymphoma, but it's no longer "follicular center cell" – the diagnosis we've been assuming for the past month or so has been correct. The new watchword is "diffuse mixed small and large cell." He tells me this is an "intermediate-grade" cancer – halfway between indolent and aggressive. Dr. Portlock has recommended to Dr. Lerner that I begin the R-CHOP chemotherapy regimen immediately (the CHOP chemotherapy combination, plus Rituxan).

The clinical trial is now out of the question. That study is limited to patients with indolent lymphoma, and I've just been booted out of that club. Everything I've been assuming has been true about my case – about the inept lymphoma crooks driving their clunky old dump truck down the shoulder of the freeway – is now false. Their getaway vehicle has morphed into a sportscar.

Suddenly, things are moving very quickly indeed. Do I have a surgeon, Dr. Lerner asks me? No, I don't have a surgeon. I've never had a surgeon. No problem – he'll have one of his office staff set up an appointment with a good one, preferably on Monday. He wants the porta-cath put in right away.

I have a vague awareness that there must be some other questions I want to ask him, but suddenly it's like the gears of my mind have become gummed up with sticky molasses. I ask a few inane questions that lead him to repeat things he's already said – a very patient man, is Dr. Lerner – before I thank him and hang up.

I stare into space for a long time, vaguely aware that I'm experiencing a sort of emotional shock. Numbly, I look at the calendar on my PDA. Monday's my day off, but Tuesday and Wednesday are chock-a-block with important meetings, in which I'm expected to play a major role. I've been working for days to prepare for a couple of these. I call Dr. Lerner's office back, and ask to speak with the person who's contacting the surgeon. When, exactly, do they anticipate the surgery taking place? (If I have to cancel out of some of these things, I'd better start doing it soon.)

No time has been wasted, I discover. In just five or ten minutes' time, they've already made a Monday-morning appointment for a consultation with Dr. Aron Gornish. Someone – not realizing I was at the church – apparently called over to the house just moments before, and left a message with Claire about the appointment time. (I wonder what sense Claire is making of this; as rapidly as these events are unfolding, I've had no time to call her with the news.) Dr. Lerner's office assistant says I can discuss the timing of the surgery with Dr. Gornish, but she reminds me that Dr. Lerner wants it to take place as soon as possible. Knowing that it's now late afternoon on Friday, I ask if she can have Dr. Lerner call me back at home to answer some further questions. She says she'll pass the message along. (It's going to be a long weekend, I think to myself, if I can't find out more about what's ahead.)

I call Dr. Portlock's office as well, and ask her receptionist to ask the doctor to call me. I don't expect Dr. Portlock will tell me anything all that different from what Dr. Lerner has already said (after all, he got his information from her). But somehow I think that, if I hear the news directly from her, it may be easier to accept. Her receptionist tells me she'll probably call me back early this evening – or if not by then, on Monday.

I can hear the sounds of Diane and Dottie – our church secretaries – in the outer office, putting on their coats to leave for the day. I step out and inform them about the change in plans. This is all very new, I tell them. I'm not sure exactly what it all means. They express concern. Moments later, I too am on my way home.

I'm there in a flash, because – as anyone who knows our church is aware – the manse is just across the street. I walk through the house looking for Claire, but everything is silent. She's gone out on some errand. There's a post-it message by the kitchen phone, with Dr. Gornish's name and the time of the appointment. I wonder what she made of the message. I call her cell phone, but she doesn't have it on. I leave a voice mail asking her to call me right away, but I know there's little chance she'll get it. I'll just have to wait till she gets back from wherever she's gone.

I pick up my copy of Dr. Elizabeth Adler's Living With Lymphoma, and find "diffuse mixed large and small cell lymphoma" in the index. It's odd, but the index directs me to a section with the heading, "Aggressive Lymphomas." There's no mention of "intermediate grade." I go to the computer and start googling the phrase. I learn that, according to at least some authorities, the three-tiered grading of NHL as indolent, intermediate and aggressive has been dropped in favor of a simpler two-tiered division: indolent and aggressive. "Diffuse mixed large and small cell lymphoma" belongs to the second category.

So, in a matter of minutes, my cancer has gone from indolent to aggressive. That sure makes my day. No wonder Dr. Portlock and Dr. Lerner were so determined to get started with the chemo.

Claire returns a few moments later – from a hospice emergency call – and hears my story. She responds wonderfully. Just listening. Just being there. What could she say, really? She doesn't try. She just stands there next to the chair where I'm sitting, stroking my hair. We had been planning to go out to a restaurant for dinner tonight – kind of a "we survived the holidays" celebration. We cancel those plans. We have phone calls to wait for, that make our flippant use of the word "survived" sound trivial.

Dr. Portlock never does call, but Dr. Lerner calls back an hour or two later. I confirm with him that we're no longer talking "follicular." Yes, it's still "B cell." No, it's not a different diagnosis – it's still lymphoma. Just another larger type of cell, in addition to the smaller ones. That’s linguistic hair-splitting, it seems to me – to say this isn’t a changed diagnosis – but I let it pass. I suppose he’s technically correct (it’s a change in grading, not diagnosis), but it certainly does affect the treatment plan.

What does "intermediate grade" mean for me, as a patient? Not a whole lot, he replies. The treatment is the same: the R-CHOP chemo regimen we were thinking about originally. It just means we no longer have time to consider various other options, but need to get going right away. Many patients with this type of cancer respond well to treatment.

Is my prognosis any different now? I tell him I remember hearing that indolent NHL isn't curable, but that some of the more aggressive types – while more dangerous initially – can be cured. Is that true of "diffuse mixed small and large cell"? Not really, he says. The "large and small cell" refers to the fact that I have both types of cells in my body. There are still some indolent cells that will behave as earlier predicted, but there are also some aggressive cells as well.

This is just great, I think to myself. Now I've got two gangs of crooks to chase: the ones in the dump truck and the ones in the sportscar. I've got the worst of both worlds. Well, at least the R-CHOP treatment works on both.

How did this change in diagnosis happen, I want to know? Did the pathologist make a mistake? Not really, Dr. Lerner replies. The Sloan-Kettering pathologist probably made a quick analysis while we were sitting in Dr. Portlock's waiting room, then either took a second look later or – more likely – "shopped it around" to several fellow pathologists, who together came up with the more complete analysis.

No, that's not what I meant. Did the local pathologist down here at the Jersey Shore make a mistake? I don't recall exactly what Dr. Lerner said in response to that, but it wasn't a definitive answer, either way.

I ask Dr. Lerner about timing. He says I can get the porta-cath put in any time next week. We'll keep our original appointment for Friday, to discuss the treatment plans in detail. I'll probably start the chemo a week from this coming Wednesday. Three treatments, three weeks apart. Then a CT scan, followed by three more treatments. Then another CT scan, "to see where we are." Each treatment will last about four hours.

Thinking about it a few moments later, I do remember reading in the Adler book that the grading of NHL is an extraordinarily difficult task, requiring a very detailed pathological analysis. I feel very, very glad that we went for the second opinion – even if it raised my hopes high for a couple of days, before slamming them down further with this revised diagnosis.

Yes, everything is different now.