March 22, 2011 – Another Cancer

It’s official: I have to undergo cancer treatment again. Only this time, it’s not for lymphoma. It’s for thyroid cancer.

Ever since my chemotherapy ended, I’ve been having routine scans every 3 or 4 months to monitor my NHL. Two scans ago, a PET/CT scan flagged an area at the base of my neck as a possible malignancy. Then, an ultrasound turned up a nodule on the left side of my thyroid gland.

It was too small to biopsy. Dr. Jay Sher, the endocrinologist I consulted, recommended “watch and wait.”

Several months later, I had a follow-up PET/CT scan. The nodule had doubled in size, to around 1.5 centimeters. I contacted Dr. Sher, who sent me for another ultrasound, then a needle biopsy.

The results are now in: papillary thyroid cancer. I learned the results not from Dr. Sher, who didn’t phone me soon after receiving the results, but from our family-practice physician, Dr. David Cheli, who called late last week. He’d received a copy of the pathology report and phoned to tell me what’s in it. He reassured me that this form of thyroid cancer is highly treatable.

A few minutes later, I called Dr. Cheli’s office back and asked them to fax me a copy of the pathology report, and I’m glad I did. If I hadn’t done that, I would have waited a long time to learn of the details. Dr. Sher’s office staff told me on Wednesday they’d received the pathologist’s narrative report, but he didn’t actually call until yesterday – and then, only after I’d left two messages for him and faxed his office my own copy of the pathology report, as a back-up.

On the phone, Dr. Sher was upbeat and jocular. This is the most treatable of all cancers, he told me. “We just pop your thyroid out, you come back a little later and take a pill, and you’re all done.” Absolutely nothing to worry about.

Around here, it seems, it’s harder to get through to an endocrinologist than any other kind of doctor. (Medical Student Alert: if supply-and-demand makes a difference to your career choice, maybe you ought to think about endocrinology).

Dr. Sher told me he often works with a Dr. Sean Houston, an otolaryingologist who does the actual thyroid surgery. He suggested I phone Dr. Houston and set up a surgery date, then let him know when it’s going to be.

Dr. Lerner had mentioned a Dr. Alexander Shifrin, a well-regarded local surgeon who does a great deal of thyroid operations. I mentioned Dr. Shifrin’s name to Dr. Sher, but he suggested Dr. Houston instead, explaining that all his patients go to him, with very good results.

My situation seems so cut-and-dry, with a clear treatment protocol and a very optimistic prognosis. I actually thought for a minute or two about not bothering with a second opinion, but then I reminded myself of my own advice to so many others. Yesterday, I called Dr. Carol Portlock’s office at Memorial Sloan-Kettering, then faxed them a copy of my pathology report.

Dr. Portlock’s assistant, Ernestine – one of the most friendly and efficient people I’ve ever had on the other end of a telephone line, bar none – explained that the doctor would surely want to refer me to a colleague in the thyroid department at MSKCC. That was exactly what I’d expected, but I figured it was best to start with my established connection, so as to get an internal referral.

This morning, Ernestine phoned back with the name of Dr. Jay Boyle, an otolaryngologist at MSKCC. I phoned for an appointment, and learned that he has an opening for a consultation tomorrow morning at their satellite location in Basking Ridge, NJ. Because that’s a much more convenient location than Manhattan, and because the next opportunity would be a week later in Manhattan or two weeks later in Basking Ridge, I jumped at it.

A flurry of phone calls later, and I’ve got all my ducks in a row to pick up my PET/CT disks from Dr. Lerner’s office this afternoon, and my pathology slides and ultrasound disks from Jersey Shore first thing tomorrow morning. From there, I’ll drive straight to Basking Ridge. They can't seem to locate the disk from my January 31 PET/CT scan, but that's not so important. It's the thyroid ultrasounds and the needle biopsy slides that Dr. Boyle will probably be most interested in.

Thank goodness, I know how all these systems work. If I’d been a cancer newbie, I’d never have been able to gather all that material together in such a short time (and I’m grateful to some very understanding people at Jersey Shore’s pathology department, who waived their usual 24-hour waiting period for getting pathology slides ready for release).

So, here we go again. Because of the highly favorable prognosis, I’m far less worried than I was at the time of my lymphoma diagnosis. If I have any anxiety other than the normal jitters about going into an operating room, it has to do with the delicate nature of thyroid surgery in general. I use my voice for a living, so I want to make sure any surgeon messing around near my larynx and vocal cords is very experienced indeed. Where and when I’ll go for the surgery remains to be seen, but the next few days will tell.

March 11, 2011 - Needle to the Neck

Today I go to the Ambulatory Care Center at Jersey Shore University Medical Center for my thyroid biopsy. I have to say, I’ve been pretty nonchalant about the whole deal, figuring that even if there is a malignancy, the nodule is very small. My online research has reassured me that treatment of thyroid cancers is likely to be highly effective.

The one thing that’s given me pause is the thought of sitting there, conscious, while somebody sticks a needle in my neck.

They’ve told me they’ll numb the area – and I’ve had plenty of needles before, with my endless blood work – but this is the neck, and somehow that seems different from the inside of the elbow or even the area by my collarbone where my port is located.

Earlier, when I spoke on the phone with the scheduler from that department of the hospital, I asked if patients reported much pain from the procedure. “Everyone’s pain threshold is different,” she replied, cagily.

Well, isn’t that reassuring?

As it turns out, I’ve got nothing to worry about. Dr. Wahid Girgis, the interventional radiologist, comes into my little cubicle in the waiting area and begins by telling me, “Of all the procedures we do here, this is by far the easiest.”

I ask him if patients report any pain from the procedure, and he replies with a smile, “I haven’t had a complaint yet.”

A remarkably un-cagey response, for a doctor.

Turns out he’s right. They wheel me on a gurney into the interventional radiology room. I eye a hulking machine to my left, that hangs something resembling an overturned drum-head over an operating table, but it turns out they don’t need to use that contraption on me. The only thing Dr. Girgis uses the operating table for is to spread out his gear. A nurse wheels an ultrasound machine on a cart over to my gurney, and they get busy right there.

Off to one side is a “cytologist,” with her own equipment-filled cart. I ask the nurse what a cytologist is, and she says, “a cell specialist.” Turns out her job is to take a look at the tissue sample and make sure it’s got enough thyroid-nodule cells in it to send off to the lab, before they send me packing.

It’s all over in less than 5 minutes. I honestly say I can’t feel any pain, just a little pressure.

A band-aid on my neck, and I’m good to go.

Results are supposed to be here by Tuesday

More waiting. But, what else is new?

An "N" of 1

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

January 3, 2011 - Just the Facts

Today, I run across an updated fact sheet on Relapsed/ Refractory Follicular Lymphoma from the Lymphoma Research Foundation.

Although my initial staging was "B-cell, diffuse mixed large and small cell," the assumption Dr. Lerner and I have been making is that the relapsed cancer we've been monitoring for the past four and a half years is follicular lymphoma (a small-cell variety). It seems to be behaving in the indolent fashion typical of follicular lymphoma, anyway. After making its first appearance 8 months after my final round of R-CHOP chemotherapy, it's been snoozing.

We've still not been able to get an excisional biopsy of the relapsed cancer. The affected lymph nodes that keep showing up on my scans are not in an easy place to access surgically. There was one attempt to do so, with a swollen lymph node at the base of my neck. That brought me all the way to the operating table, but was called off at the last minute when the surgeon could no longer feel the affected lymph node.

Based on what I've learned about the disease, I'd say the fact sheet is a good one. It reflects some of the latest developments in research. It doesn't mention idiopathic vaccine treatments, though, that are still being researched.

The fact sheet communicates some wonderful news: that, thanks to the energetic researchers working in this field, there is now a range of possible treatments to choose from.

Here's another write-up, from the National Cancer Institute website. One line from that summary of recent research that catches my eye is this one: "For patients randomly assigned to watchful waiting, the median time to require therapy was 2 to 3 years and one-third of patients never required treatment with watchful waiting (half died of other causes and half remained progression-free after 10 years)."

I'm already past the 2 or 3 year median, and have a pretty good chance of landing in the one-third of patients that never require further treatment.

At such time as further treatment may be called for, I think I'd lean in the direction of radioimmu- notherapy (a single dose of Bexxar or Zevalin). Either of those medications seems to me to strike a good balance between effectiveness and quality-of-life issues. I'd rely heavily on Dr. Lerner's recommendation, of course, and would also go for a second opinion with Dr. Portlock, as I did before.

Stem-cell transplant is potentially the most effective treatment of all - but that's riskier, involves multiple side-effects and presupposes that a compatible donor could be found (we've already discovered that neither of my two brothers are a good match, so I'd have to depend on the national donor registry).

So, those are the facts (at this point in time).

August 16, 2010 - The Big C

This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.

I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).

Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.

Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.

Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.



The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.

Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.

He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)

So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.

“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”

Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.

The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.

What, Showtime was too stingy to spring for a decent medical advisor?

Washington Post reviewer Hank Stuever makes a similar point:

“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”

While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.

Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.

May 16, 2010 - What To Say or Do When a Friend Gets Cancer

Here’s a helpful video clip from the Today Show, featuring Lori Hope, author of the new book, Help Me Live: 20 Things People with Cancer Want You to Know:

Visit msnbc.com for breaking news, world news, and news about the economy

When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.

Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.

I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.

I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.

Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.

September 14, 2009 - I Stand Corrected

Friday I had a long-scheduled appointment with Dr. Lerner, following my most recent CT and PET scans. I didn’t feel at all anxious going into this appointment. One of the nurses had phoned me the day after the scan with a message from the doctor, saying there was no significant change. I’m still out of remission, but the cancer hasn’t grown perceptibly since it first reappeared. It’s the sort of ambiguous news I’m used to getting from this decidedly indolent cancer.

The news could have been better – “no cancer” – but that’s highly unlikely, from what I’ve been told about this form of NHL. It could also, of course, have been worse – “the cancer has grown.”

I’m at neither extreme. I’m living with ambiguity, learning to take comfort where I can amidst the uncertainty of watch-and-wait.

There was one peculiarity the nurse had mentioned. “Did you have a fall?” she asked.

“No, what makes you think that?”

“Well,” she replied, "the PET scan shows some hot spots near your right ribs. That’s consistent with a recent injury, or it could be just an inaccuracy in the test.”

Dr. Lerner explained, when I saw him, that the PET scan shows three spots on my ribs. If I don’t recall getting a jolt in the ribs, he said, it’s probably nothing significant – a false positive. This is because the more accurate CT scan shows nothing out of the ordinary. That’s the one we trust for a detailed diagnosis.

As for the thyroid nodule, the follow-up ultrasound revealed the nodule had grown no bigger. If that proved to be the case, my endocrinologist Dr. Sher had told me some months ago, it probably means the nodule is benign (as he suspected anyway, from observing it).

That’s the problem with all this high-tech medicine. These machines are so powerful, they sometimes reveal non-problems we never knew we had.

I did learn something new from Dr. Lerner this time around: a fine point about the grading of my disease. I’ve been telling people – and writing in this blog – that, after chemo, my grading changed from “diffuse mixed large and small cell” to “follicular lymphoma.” When I described my cancer as follicular lymphoma, Dr. Lerner corrected me. Scanning the pathology report from my most recent biopsy, he told me I don’t have that grade. What I have is “diffuse small cleaved cell” lymphoma.

They're similar. Both are B-cell. Both are indolent types. Yet, when my cells are slathered onto the microscope slide, they don’t display the follicles that give follicular lymphoma its name. (Here's a sample of diffuse small cleaved cell lymphoma I found on the Internet...)

Not being schooled in the ways of these tiny cells, I can’t imagine how that difference is important. Surely it will have some influence on my treatment plan, when the time for further treatment finally comes. The details are understood only by people who peer through microscopes.

In a Google search, I came up with a page that describes the difference:

“We have investigated the cellular origin and/or pathogenesis of follicular small cleaved cell lymphoma (FSCCL), diffuse small cleaved cell lymphoma (DSCCL) and intermediate lymphocytic lymphoma/lymphocytic lymphoma of intermediate differentiation (ILL/IDL) based on a series of immunologic and molecular genetic (bcl-1, bcl-2 and bcl-3 genes) studies. These studies have led to the conclusion that the cellular origin or pathogenesis of ILL/IDL and DSCCL is distinctly different from that of FSCCL: (1) FSCCL is a neoplastic counterpart of follicular center cells (FCC) of secondary follicles because of the presence of CD10 and bcl-2 gene rearrangement and the absence of CD5 and bcl-1 gene rearrangement; (2) DSCCL and ILL/IDL are a neoplastic counterpart of mantle zone (MZ) B lymphocytes because of the presence of CD5 and bcl-1 gene rearrangement and absence of CD10 and bcl-2 gene rearrangement; and (3) FSCCL scarcely develops into DSCCL, and the previously proposed concept that DSCCL represents a diffuse counterpart of FSCCL does not hold good.“

Well, that’s clear as mud, isn’t it?

I’m just glad my DSCCL is indolent, like the FSCCL I formerly thought I had. Keep your siesta going, cancer cells. I can wait.

January 4, 2009 - The Last Chapter

The other day I was catching up on my reading, scrolling through the entries on some cancer blogs. On the blog of Mike Dellosso, a published novelist, I came across a short story he wrote, called “The Last Chapter.” (After clicking on the above link, scroll down to the very bottom of Mike's page for the link to his story.) He wrote it, he says, right after his own cancer diagnosis, as a sort of coping exercise.

I find it interesting to read, from the perspective of a cancer survivor. The story’s about a newly-diagnosed man, a construction worker, who learns from his doctor that his cancer is advanced and untreatable. He resolves to end his own life, then some experiences he has lead him to question that decision.

Here’s something Mike writes in another blog entry, dated December 30:

“I learned this: God is good all the time. ‘But how is getting cancer good?’ I have no idea. But I know this. God’s standard of goodness is not the same as ours. His understanding of goodness is on a different plane than ours. He sees things our eyes could never see. Knows things our minds could never even dream of fathoming. His idea of suffering is not the same as ours. He is God and I am not. And in that I have to place my trust.

I also learned this: God will never . . . ever . . . abandon me.”

Like the protagonist in Mike’s story, the news of a cancer diagnosis can shake our lives to their foundations. Most of us – like Mike, and like the man in his story – enter into this crisis and come out the other side, eventually, feeling stronger for the experience.

It’s one of the wonders of this experience called cancer.

“We know that all things work together for good for those who love God, who are called according to his purpose.” – Romans 8:28

December 11, 2008 - I Missed My Cancerversary

Generally speaking, it’s not a good thing to miss an anniversary. Spouses and significant others tend not to be amused by such lapses of decorum.

When it comes to the anniversary of one’s cancer diagnosis, though – one’s cancerversary, some call it – it’s different. A cancerversary can actually be a good thing to forget.

I missed mine this year. Even though the date sits right up there at the top of this blog, bold as brass, I missed it. This December 2 marked three years since that day Claire and I sat in Dr. Lerner’s office and heard him deliver the news.

What does it mean that I forgot my cancerversary? It means I continue to feel fine, even though tests and scans keep flagging enlarged lymph nodes here and there. It means I’ve been so busy, I haven’t been thinking about cancer as much as I used to. It means, in simple calendar terms, I’ve simply put more distance between that day and today.

I can’t relax completely, of course. I can’t put it behind me. I’m not in remission, after all.

That’s the paradox of this indolent variety of the illness. Except for that flickering scan image on some radiologist’s monitor, you feel fine. Life goes on. Yet, all the while, silently and sneakily, the malignancy continues to lurk, and sometimes even to grow. It’s the tiny, hard pea under the stack of mattresses.

Still and all, it’s probably a good thing that December 2 passed me by, without black crepe and dirges. It shows I’m slowly learning how to live with this thing.

November 10, 2008 - Diagnosis Amnesia

Today, reading an e-mail newsletter, I come across an article about a very real psychological phenomenon I’ve experienced in the past. For lack of a better description, I’ll call it “diagnosis amnesia.” (“New Cancer Patients Retain Little Medical Information,” HealthDay News, October 22, 2008.)

It’s a common phenomenon, it seems: when a doctor has bad news to deliver to a patient, the patient may speak calmly and rationally, ask appropriate questions and nod with evident understanding. But then, the very same patient may walk out of the office and promptly forget a good deal of what the doctor has just said.

I know. That’s what I would have done on the day of my diagnosis, had I not had Claire along with me to remind me of the details, and had I not brought a notebook to scribble down all the medical terms we were hearing for the first time.

The article reports how “researchers... found that most people just diagnosed with cancer remembered less than half of what their doctor had told them.” I can remember concentrating very intently, that day, on what Dr. Lerner was saying to us. I can remember asking him to define terms, to explain the interpretation of test results – all the right questions, in other words. But then I can also remember, while surfing the medical-information web sites at home a few hours later, struggling to recall whether he’d just told me I have B- or T-cell lymphoma (which I now understand is a hugely important piece of information). Many of the details that had been so crystal-clear to me, there in the examining room, had slipped right out of my memory banks. I can remember opening up that pad of paper I’d brought with me, and reading the barely legible notes I’d taken – notes that were so fragmentary, they made little sense. And I’d only written them two or three hours before! It was like I had wool between my ears, or something.

I now recognize this as a common, ordinary symptom of psychological denial. The words, “You’ve got cancer,” are so momentous, so emotion-laden, that they have the capacity to force the brain to do a partial data-dump.

The conclusions of the researchers doesn’t surprise me one bit. “In one ear and out the other” with half of what the doctor has said doesn’t seem at all unusual.

Here’s more:

“Older people tended to ask fewer questions than younger ones, and surprisingly, those who asked the most questions had poorer recall. And people with a grimmer prognosis tended to remember less information than those with a brighter outlook, according to the study.”

Yup. That’s denial, all right.

So, what does this suggest, when it comes to trying to be a good patient? Bring someone with you, for one – a second set of ears always helps. Bring along a notebook, and don’t be afraid to write things down, right there in the doctor’s presence. Also, ask the doctor for booklets and brochures that explain your condition (fortunately, when it comes to most cancers, the doctors have plenty of these to give away, courtesy of the pharmaceutical companies).

And, one more thing: don’t worry if you have a hard time remembering this stuff. It’s just your system hunkering down and trying to protect you from the impact of dreadful news. Don’t be surprised if you have to reconstruct, later, what you heard – based on what your friend or family member recalls, and what you wrote down in your notebook.

Diagnosis amnesia is a powerful thing – and very real.

July 6, 2008 - Cancer on $5 a Day

Cancer on $5 a Day* (*chemo not included) is the title of a book by comedian Robert Schimmel (Perseus Books, 2008). So, who makes jokes about cancer? Only someone who has it.

Sometimes you’ve just got to laugh. Especially if you’re a comedian.

The day he was diagnosed with non-Hodgkin lymphoma, Schimmel made a joke about it. To his doctor. At the Mayo Clinic.

There’s the doctor, probably feeling all nervous about having to deliver such devastating news to yet another patient. He puts on his medical game face. There are two kinds of lymphoma, he tells Schimmel: Hodgkin’s Disease and Non-Hodgkin’s Lymphoma. He writes the words on a pad of paper, for extra effect. “You have Non-Hodgkin’s Lymphoma,” he intones.

“Just my luck,” deadpans Schimmel. “I get the one not named after the guy.”

The doctor is quick on the uptake. “Well, if you can find something funny the moment you get the diagnosis, you’re going to be okay.”

Let’s let Schimmel tell his own story from here:

“Poof. The joke brings a moment of relief. Of hope. The tension in the room escapes. It’s as if we're encased inside a giant balloon, and, pop, I’ve stuck a pin in it and let the air out. All that’s left now are the five of us and Mr. C, the rampaging rhinoceros in the room.

Amazing when you hear that word.

Cancer.

Cancer.

I know that for some people just hearing ‘You’ve got cancer” means they’re dead. Bam. Might as well stop at the mortuary on the way home and pick out the casket. Life over. And the buzzer sounds. Ball game.

And I know that there are other people, loved ones, sitting bedside, who immediately say, ‘Don’t worry, you're not going through this alone.’

Yeah? When they lower me into the ground, are you jumping in, too? I don’t think so. I’m taking this death cruise all by myself. I know that much.

What’s strange, but not surprising, is that when I hear the word, my first reaction, my initial instinct, is to go for the laugh.

It really is. I don’t plan it, don’t think about it. I just go for it. I realize instinctively that even though I’ve just been told I have cancer, I haven’t been told that I’m going to die. And to prove it, I’m going to do the one and only thing that shows that I am very much alive:

I am going to make the audience laugh.

It’s a small house tonight – my mom, my dad, the lump doctor, and my oncologist – but they’ve paid for their tickets (well, it’s co-pay). They’re here for the show and I’m not going to let them down. I’ve still got my sense of humor, my edge. And that means I’m alive!” (Pp. 14-15)

Schimmel’s first reaction is to go for the laugh. It’s what he does.

So, what was my first reaction to my own NHL diagnosis? I started a blog. A place to reflect on the theological and spiritual meaning of what I’m going through, and bounce it off a biblical text now and again.

That’s because I’m a preacher. It’s what I do.

Schimmel’s doing better now, by the way. His chemo treatments put him in remission. He’s come up with these “simple, yet profound life lessons” as a result of the experience:

“Keep your sense of humor, no matter what.

Create a purpose, a focus, and never take your eyes off it.

Figure out what’s important to you. What’s really important.

Be open. Try anything. You never know.

Love. You need love. Tons of it. A s***load of love.

Sometimes you need to be selfish.

You need support. You’re in this alone, but you can’t fight it alone.

The most precious thing you have is time. Don’t waste it.

You’re only human.

And, finally, once again –
Laugh.” (pp. 185-186)

I suppose each of us cancer survivors reacts to the News (that’s News with a capital “N”) in our own unique way. Our reactions are true to who we are, and to what we spend most of our non-cancer time doing.

There’s no right or wrong way to be a cancer survivor. We are who we are. We choose the path that works for us.

May 12, 2008 - Unbroken

At the age of 20, Jerry White lost his leg – and nearly his life – as he stepped on a landmine while on a camping trip in Israel. Later, he went on to work as a leader of the International Campaign to Ban Landmines and become co-founder of Survivor Corps. White has just published a book about how to survive a catastrophic life event. Here’s a selection:

“They say what doesn’t kill you makes you stronger. It’s not quite that simple. I believe you have to decide it will make you stronger. Experience has taught me that happy endings can never be taken for granted. They must be chosen. When I was in the hospital for six months in Israel, no one did my physical therapy for me. No one underwent the pain or the fear of six operations for me. I would have liked for someone to, maybe. I confess, the first time I was put in a wheelchair, I sat there and waited for someone to push it for me. I had just had another surgery, I was weak, in pain, exhausted. And when I looked up at my nurse, she looked down at me and laughed. “If you want to move, push.” And so, I did. And I continue to do.

Whether we like it or not, personal determination is required to build resilience – to become fit for whatever the future may hold. We have to tap inner resources and develop some emotional muscle. It’s both a discipline and our responsibility. No one can do it for us.

The good news is we are not alone. We are surrounded by survivors who have gone before us, and their examples will help mark the way forward.”(I Will Not Be Broken: 5 Steps to Overcoming a Life Crisis, from the Introduction.)

White’s experience was of a sudden, traumatic injury. One moment, he was hiking with two friends through the Israeli countryside. The next moment, the earth exploded around him, and his right foot disappeared. The next day, he lost more of his right leg to the surgeon’s knife.

Even so, I think White’s conclusions can be generalized to include the experience of being diagnosed with a slowly-progressing disease like cancer. In the book, he recalls a conversation he had with Princess Diana, with whom he worked as an anti-landmine activist. Touring Bosnia and speaking with survivors, they observed that everyone seemed to have “their date.” They could all state precisely on which date they had been injured or bereaved.

Many of us cancer survivors can do the same with our dates of diagnosis (mine was December 2, 2005). Before that date, we may have a suspicion something is wrong, but we still have the luxury of hoping it’s nothing serious. After that date, we can never return to such naiveté. We will, forever after, be cancer survivors.

White identifies five essential steps in coming to terms with a life crisis. I think they can be generalized to include the experience of receiving a cancer diagnosis:

1. FACE FACTS. One must first accept the harsh reality about suffering and loss, however brutal. “This terrible thing has happened. It can’t be changed. I can’t rewind the clock. My family still needs me. So now what?”

2. CHOOSE LIFE. That is, “I want to say yes to the future. I want my life to go on in a positive way.” Seizing life, not surrendering to death or stagnation, requires letting go of resentments and looking forward, not back. It can be a daily decision.

3. REACH OUT. One must find peers, friends, and family to break the isolation and loneliness that come in the aftermath of crisis. Seek empathy, not pity, from people who have been through something similar. Let the people in your life into your life. “It’s up to me to reach for someone’s hand.”

4. GET MOVING. Sitting back gets you nowhere. One must get out of bed and out of the house to generate momentum. We have to take responsibility for our actions. “How do I want to live the rest of my life? What steps can I take today?”

5. GIVE BACK. Thriving, not just surviving, requires the capacity to give again, through service and acts of kindness. “How can I be an asset to those around me, and not a drain? Will I ever feel grateful again?” Yes, and by sharing your experience and talents, you will inspire others to do the same.(I Will Not Be Broken: 5 Steps to Overcoming a Life Crisis, from Chapter 1.)

There’s something of an up-by-the-bootstraps character to this way of thinking, but I think it makes good sense. We all depend on our medical professionals, family and friends to do things for us, but ultimately we’ve got to claim responsibility for our own healing.

May 5, 2008 - How Doctors Think

This morning, I finish reading How Doctors Think, by Jerome Groopman, M.D. I’d give this book an unequivocally positive recommen- dation. It’s one every patient should read.

That’s no exaggeration. I really mean it.

The book’s important because of the light it sheds on a mysterious chemistry: that of the doctor-patient relationship, particularly when it comes to diagnosis. As we patients lay down our magazines and make our way from the waiting-room into that medical holy of holies, the examining-room, many of us look for something magical to happen there. Doctors, clad in their priestly, lab-coat vestments, shuttle from room to room. We’re a little in awe of our doctors. They have the gift. The whole medical system is designed to maximize their precious time, so more patients can have their few brief moments in the presence of the gift of diagnosis.

The higher you climb up the ladder of medical specialists, it becomes less likely your doctors will occupy themselves with routine matters like asking medical-history questions or taking vital signs. Nurses and aides – and, in teaching hospitals, doctors-in-training – typically perform such tasks. If the system is working as it should, their careful observations will be laid out before the doctor as he or she performs the cognitive process leading to diagnosis and treatment. If the system’s not working well, the doctor’s understanding of the patient will be superficial, and mistakes become more likely. Decisions may be made in a two-dimensional way: mechanically matching up symptoms with slots on a treatment-protocol flow chart, ignoring the living, breathing, thinking complexity of the human being who’s sitting on the edge of the examining-table.

Groopman unpacks the mysterious, priestly work of diagnosis and treatment for us laypeople to understand. He probes the meaning of the diagnostic gift, and asks how it can best be utilized. He reminds us of a very old-fashioned idea: that medicine is an art as well as a science.

Groopman’s point is that a clinical consultation in a doctor’s office is an act not only of number-crunching scientific analysis, but also of communication. In the examining-room, two people come together and talk. What they say – and, often, what they don’t say – can mightily determine the outcome.

I come away from this book with a renewed appreciation for two types of physicians: the unsung, relatively underpaid family-practice doctors whose intuitive diagnostic skills are honed to a fine edge, and those specialists who possess the strength of character to buck the system’s pressures to think only in terms of numbers, not the person. It’s no wonder Groopman’s final chapter is entitled, “In Service of the Soul.”

I think back to my own experience of diagnosis. Groopman could have used it as an example in his book. I go into David Cheli’s office for an annual physical. Aware that I’m nearing 50, I mention the fact that my father nearly died of a dissecting aortic aneurysm. I know these can be hereditary, I tell the doctor. Is this something I should be checked for?

“That’s unlikely,” says Dr. Cheli. “You don’t smoke, and your blood pressure is fine.” He sends me on my way, with the usual encouragement to lose weight and exercise more.

At the next year’s annual physical, I mention an aneurysm again. I’m not reporting any symptoms relevant to such a diagnosis, but it’s been on my mind, for some reason. Thinking back to that time, I now realize that maybe, on some subconscious level, I was aware that the mid-section of my body felt somehow different. If you’d asked me directly about it, though, I would have scoffed at the suggestion. (In retrospect, I realize I was experiencing one symptom relevant to lymphoma, night sweats – but I wasn’t attuned enough to mention it to the doctor.)

What I could articulate, on a conscious level, was a vague anxiety that I could end up like my father someday – being airlifted to a major medical center for a herculean operation to replace a split-open section of my aorta with a nylon substitute. It wasn’t a rational thought – but, as it turned out, it did have a kind of truth behind it.

Who knows what went through Dr. Cheli’s mind, at that point? Here’s a patient – overweight and a bit stressed-out, but otherwise healthy – worrying for the second year in a row about a medical condition for which he doesn’t fit the profile and doesn’t have the usual symptoms.

What Dr. Cheli did was send me for an ultrasound scan of the abdomen. Did he have a reason for doing so, other than my repeated question about an aneurysm? Was he ordering that relatively inexpensive test simply to give me peace of mind, or did he intuitively suspect something else was up? I don’t know. But, I’m awfully glad he did order the ultrasound. It was in the grainy images on that screen that the bulky tumor in my abdomen was first revealed.

The light bulb goes on for me, this morning, as I read these words from the Epilogue to Groopman’s book, about the thoughts that may go through our minds, as patients, as we talk to the doctor: “Our notions sometimes come from knowing a friend or relative with a similar symptom, or ideas may have been sparked by looking on the Internet. Our thoughts about our unrelieved symptoms often focus on the worst-case scenario. Such self-diagnosis is a reality that neither patient nor physician should ignore. Since the doctor may not address it, you should. ‘I’m most worried that what seemed like acid reflux could be the first sign of cancer,’ one patient might say. Or another might recount to the doctor how her friend was told she had indigestion but it was actually a brewing heart attack.... A thoughtful doctor listens closely to these worries.” [Jerome Groopman, How Doctors Think (Houghton Mifflin, 2007), p. 261.]

Thanks, Dr. Cheli. Thanks for listening.

March 15, 2008 - The Bucket List

Yesterday, Claire and I went to see the film, The Bucket List, at our local second-run movie theater. We don't get out to many movies in theaters, and this is one we'd meant to see on its first time around, but missed. We're glad the Beach Cinema in Bradley Beach gave us a second chance.

In case you haven't seen it or read about it, the film is about billionaire executive Edward Cole (Jack Nicholson) and blue-collar mechanic Carter Chambers (Morgan Freeman). These two men are sharing a hospital room on a cancer ward when they both learn they have fewer than six months to live. They decide to stop behaving as though they are already dead. Bankrolled by Edward's substantial fortune, they check out of the hospital and live their lives to the fullest in the short time they have left. Living life to the fullest, for Edward, involves field trips like skydiving, visiting the Pyramids and getting a tattoo – macho activities that set the ol' adrenaline a-pumping. Carter's ideas are more modest and more values-driven – "witness something truly majestic," "help a complete stranger" – although he enthusiastically joins in on the race-car driving and touring the world on a private jet. All these are detailed on a scrap of paper from a yellow legal pad they call the "bucket list": the things they want to do before they kick the bucket, which they then scratch off the list, one by one.

It's a buddy movie for the cancer set. In any other circumstances, these two men would have been unlikely to become friends, due to differences in background, wealth, temperament and religious beliefs. Yet, they do become friends. The thing they have in common is cancer, and an awareness that their days are numbered.

The film's plot has been savaged by some critics for being contrived, but the fans evidently loved it. It was the number-one film in theaters for a time. Surely, a large part of its appeal is the chemistry between these two accomplished actors, but I think it also has to do with the way the film fearlessly takes on big, philosophical questions like the meaning of life, death and religious faith. The Bucket List doesn't supply a lot of answers, but the journey is a fine ride.

I was especially impressed by the role religious faith plays in the film. Edward, the over-the-hill hedonist, is a frank and rather prickly agnostic, declaring that the sum total of his belief is "We live, we die and the wheels on the bus go round and round." Carter gently declares his faith in God, although he admits it's not based on empirical evidence. That's what faith is all about, he tells his new friend. To him, faith is clearly not a truth distilled from empirical analysis. It's not something you deduce. It's something you do.

Does Edward get the message? The film hints that he does, leading him to a sort of personal redemption, through repairing some long-sundered family relationships (I won't say more than that, so as not to be a plot-spoiler).

I've never been as sick as the two men in the film, but the scenes of them learning of their cancer diagnosis did strike a chord. News like that sure does pick you up, turn you around and put you back down in a different place.

Everyone should see this film. It's a gem.

February 14, 2008 - Hearts and CT Scans

Today I go to Ocean Medical Center for my 3-month CT scan. As I walk into the room where the scan will take place, I immediately notice that the large, fiberglass-covered donut of the scanner is covered with red paper hearts, stuck up there with pieces of surgical tape.

It’s Valentine’s Day, of course, and the radiology staff of the hospital is trying to make the place look festive. I give them an “A” for effort, even if the decorations look a bit haphazard.

It’s a reminder, to me, of what medicine is all about – or, at least, what it ought to be all about. Here’s a CT scanner, one of the highest of high-tech pieces of diagnostic equipment. Its purpose is to analyze the human body, breaking the complex reality that is a human life into constituent parts that can be expressed numerically. When I lie down on that sliding platform, and the whirring engine slides me slowly through the hole in the donut, the CT scanner will render my physical existence into images, that will tell my doctors what’s going on inside me. It’s a technological wonder.

Yet, as adept as the CT scanner is at depicting what I am, it’s absolutely blind to who I am. What are my thoughts, my hopes, my dreams, my fears? The scanner knows nothing of such things.

That’s where the paper hearts come in. They look incongruous, there, on the side of the scanner. But I’m glad to see them. They tell me the hospital staff cares about more than just numbers.

October 4, 2007 - Go-Slow on the Stem-Cell Transplant

This morning I drive up to Hackensack University Medical Center, for an examination and consultation with one of their lymphoma specialists, Dr. Tatyana Feldman. I hadn't requested this appointment; Dr. Michele Donato (the stem-cell transplant specialist) set it up, after the meeting of the Tumor Board at which the doctors discussed my case.

Between sitting in the waiting room and an intake interview with a nurse practitioner, it's three and a half hours before I finally meet the doctor. (They think nothing of making patients wait for very long periods at Hackensack.) As with my last visit, I'm prepared for this ordeal: both mentally and with a book in hand. I finish the book just before they call my name.

"Oh yes, I remember your case," says Dr. Feldman, as she enters the examining-room and looks at my folder. (She's a member of the Tumor Board.) There's a cursory physical examination, feeling for swollen lymph nodes, but – no surprise – there's nothing remarkable to report (my swollen nodes are pretty deep down).

Dr. Feldman gets right down to business, reading through my file. She's most interested in the report of the Hackensack pathologist, who has taken another look at my biopsy slides. She confirms my indolent-NHL diagnosis, and speculates that, regarding my first biopsy, the Memorial Sloan-Kettering pathologist may have been in error in declaring that my lymphoma had an aggressive component. This sort of pathology is not an exact science, she explains. Different pathologists have different methods of counting cells. Whether I had a truly mixed staging that morphed into indolent-only disease, or whether it was only indolent to begin with, is pretty much academic; there are differences of opinion, among pathologists, about the boundaries of each category. (It wouldn't have affected the treatment I received, either way; R-CHOP is pretty much the universal first-line treatment for a bulky-tumor NHL like I had.)

In any event, we're clearly dealing with indolent lymphoma now, so everyone's still agreed we'll proceed on that basis.

Dr. Feldman tells me she doesn't recommend a stem-cell transplant at the present time. No surprise, there; Dr. Lerner's advice to me all along has been that this is something for the future. The trip to Hackensack is mainly in order to get registered with that hospital, and get my brothers typed as possible allogeneic donors. These transplants – while offering the only real hope for a cure, at a 65% chance of succeeding – also expose patients to a risk of deadly infection. Dr. Feldman points out that 10-15% of transplant patients die of infections, or out-of-control graft-vs.-host disease. So, it's not something we ought to rush into.

Dr. Feldman also tells me my lack of bone-marrow involvement is relatively uncommon. Most indolent-lymphoma patients do have some cancer in their bone marrow. I ask if this makes a difference with respect to the likelihood of a successful transplant – whether there would be any advantage in getting it done sooner rather than later, before it's gotten into the marrow. No, she replies: with an allogeneic transplant (cells from a donor, as opposed to an autologous transplant, with cells coming from me), it makes no difference.

Dr. Feldman is Russian – I can detect an accent – and now she relies on a saying from her culture to explain my situation. It's not exactly like "a bird in the hand is worth two in the bush." She likes the Russian version better, which is something like, "don't gaze up at the crane high in the sky, while there are lots of sparrows on the ground." In other words, as long as my quality of life is good, let's get what advantage we can from the less-dangerous approaches, before undertaking heavy-duty treatment.

When it comes time to treat the cancer again – when the lymph nodes grow to a sufficient size, or when I start having symptoms (pain, sleeplessness, night sweats, sudden weight loss) – there are a number of options available. One of them, she says, is Zevalin (the radioimmunotherapy drug), which she says has an impressive record of success.

However many years down the road we may begin talking seriously about stem-cell transplant, the universe of available treatments will probably have expanded. Some therapies now in clinical trials may then be in common usage, and other, as yet undreamed-of treatments may be in trials (which Hackensack could play a role in getting me into). Time, in other words, is very much on my side.

I leave feeling rather upbeat. The crash-course I’ve had in stem-cell transplants in the past several weeks has caused me to brood about this possibility more than I really needed to. My purpose in going to Hackensack has been both educational for the present, and proactive with respect to the future. I do feel like I know a lot more about the transplant option, and certainly the folks at Hackensack know me, now – which is a very good thing.

Next Wednesday, I'll meet with Dr. Lerner. He'll help me understand more about all this, I know.

Leaving the hospital, I stop for a late lunch at an Asian buffet. Lots of wonderful sushi – a nice way to celebrate the pretty-good news.

September 19, 2007 - My Well-Traveled Slides

Today I get a call from Angelica, who works for the stem-cell transplant program at Hackensack University Medical Center. I’d expected to hear the results of the Tumor Board’s review of my case, which was supposed to take place this morning. As it turns out, they’ve had a hard time locating the pathology slides from my most recent needle biopsy, and have postponed consideration of my case until next Wednesday.

Someone from the Hackensack staff called Ocean Medical Center, Angelica explains, only to find that the slides were still at Memorial Sloan-Kettering (Dr. Portlock’s staff had told me they were going to send them right back to OMC, but evidently they didn’t). The person then called the MSKCC staff, who located the slides in their archives and lobbed them across the Hudson.

“Hackensack’s a large hospital,” Angelica continued, apologetically, “and sometimes it’s hard to find things here.” By the time they'd located my slides, in the mailroom or wherever they'd landed, there wasn’t enough time for the pathologist to review them prior to the Tumor Board’s meeting. The Board will meet again next Wednesday morning, to consider my case.

The delay’s not a big deal, medically speaking. We’re in a slow-motion, “watch-and-wait” mode, after all. That’s not to say I haven’t been anxious to hear the results. But it’s OK, I can wait another week.

This story highlights how important medical records are to cancer patients. The last time I watched Dr. Lerner open my file, it had grown to 3 or 4 inches in thickness – all that paper, in less than two years! Everywhere I go, in my peripatetic quest for wellness, I seem to trail scan films, data CDs and microscope slides in my wake. I’ve tried to pick up after myself, making sure my primary records all end up at Ocean Medical Center, eventually, but that’s not always up to me. I’m just glad the Hackensack people located them eventually. I wouldn’t want to repeat a biopsy because slides have gone missing!

When most of us think of medical decision-making, we tend to picture a wise doctor with a stethoscope, poking and prodding and questioning a patient, then making some carefully reasoned but intuitive judgment. I’m sure some diagnosis still happens in that old-fashioned way, but you don’t have to venture very deeply into lymphomaworld before you discover the hands-on approach has been largely replaced by quantitative analysis. As the numbers are crunched, it’s not typically one individual leaping to a brilliant, intuitive conclusion. The work is done by interdisciplinary teams, weighing columns of data against established protocols.

Decisions are being made about my treatment plan by people I’ve never met, and probably never will meet – pathologists peering through microscopes, Dr. Donato’s unnamed colleagues on the Tumor Board, other specialists who may be called upon to review particular details.

At least the Hackensack staff seems pretty good at keeping me informed. I appreciate that.

September 7, 2007 - Crazy, Sexy Cancer

No, I haven’t lost my mind. That title is borrowed from a film I just watched on The Learning Channel. I’d saved it on the TiVO just before leaving for a week of study leave up at our Adirondacks place (which, by the way, is why I haven’t written any blog entries for a while).

Crazy, Sexy Cancer is an autobiographical indie documentary, made by a young woman named Kris Carr, who’s got a rare and incurable form of cancer that’s led to the growth of tumors in her lungs and liver. Kris is an actor, who was evidently experiencing some success with movie and TV roles (including an episode of Law and Order, and being a “Bud Girl” in Super Bowl commercials), before her diagnosis hit her like a ton of bricks. She quit the acting biz, and went into self-care full-time, traveling around the country seeking various complementary treatments (she says has good medical insurance to cover her traditional treatments, and financed all this jetting around by selling her New York apartment – although I wonder if she’s got other sources of financing).

I wouldn’t have thought I’d have much in common with someone like Kris (married, fiftysomething suburban Presbyterian pastor meets single, thirtysomething New York actor who practices yoga and New-Agey alternative treatments) – but, in fact, I do. Although Kris and I have different forms of cancer, and have generally taken different treatment paths, there are many places where her story and mine intersect.

Kris evidently started keeping a video journal just days after her diagnosis. Later on, the journal project became a full-blown documentary. The film catches her reactions to her illness at various stages. It’s honest, edgy, and very much focused on the perspective of young adults with cancer – who, in addition to everything else, have to worry about questions like whether they’ll ever be able to have children, and whether they’ll ever find someone to marry.

Like me, Kris is not in remission, but her cancer is moving so slowly that her doctors are recommending a “watch and wait” approach. This is where I really resonated with her situation. When I heard her doctor at Boston’s Dana-Farber Cancer Institute explaining to her the counter-intuitive reasoning behind “watch and wait” – why pursuing no treatment for a time can have as good a therapeutic result as chemotherapy and similar aggressive approaches – I heard echoes of Dr. Lerner trying to explain the same thing to me.

The film shows Kris subjecting herself to some rather demanding alternative treatments, like macrobiotic diets and blender shakes (and enemas!) made from wheat grass. She explores Hindu religious practices. Some of these approaches she keeps up, and others she discards after a while. At the end, her doctor tells her that her disease is “stable” – although, having watched him speak to her several times, at various stages of her journey, it seems to me like he expected this could well be the outcome, regardless of the complementary treatments she pursued. Were these treatments responsible for her good results? It’s impossible to say. But they were part of how she took charge of her own situation, so “more power to her,” I say (although you won’t see me drinking wheat-grass potions any time soon).

In an interview on the Today show, Kris speaks of “pulling a dumpster up to my life” and ridding herself of all that was inessential. “As I was looking for the cure, I really found my life.” She sounds a lot, here, like Lance Armstrong, who has said, “Cancer is the best thing that ever happened to me.” I can certainly attest to the fact that it does give your life a certain focus.

Kris is presently on a national book tour, promoting her self-help book, Crazy Sexy Cancer Tips. She’s also blogging about the experience.

Her film is well worth watching. She doesn’t know, by the way, whether TLC will ever replay it, but a DVD is apparently in production.