Sunday, July 10, 2016

July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. If I opt for surgery, there’s a 10% chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”


Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. There’s a ten percent chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”


Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

Wednesday, December 02, 2015

December 2, 2015 — Ten-Year Cancerversary


Ten years ago today, Claire and I were sitting in the office of my oncologist, Dr. William Lerner, feeling stunned by the news of my diagnosis with non-Hodgkin lymphoma. It was too much information to take in all at once. As happens with many who receive a cancer diagnosis, it rocked my world. I can remember sitting there and nodding my head as the doctor went into various details of my grading and staging and what to expect, but only retained about half of it. Thank goodness I had taken some notes to which I could refer later.

During the months that followed, I had surgery to implant a chemo port that would stay in my body for 7 or 8 years. I had six rounds of R-CHOP chemo, spaced at three weeks apart. I lost my hair, and dealt with all the weakness and queasiness that go along with a powerful chemo regimen.

I learned much about the love and support that come from family, friends and church during a season of serious illness. I ran up against the limits of my energy on numerous occasions, and learned how to step back and let others do things for me — never an easy thing for someone in a helping profession.

I had a subsequent diagnosis of thyroid cancer a few years ago, which led to the surgical removal of my thyroid gland followed by radioactive iodine treatment. There has been no recurrence, though I still see the thyroid surgeon, Dr. Jay Boyle, once a year for follow-up, as well as my endocrinologist, Dr. Stephanie Fish, who monitors my Synthroid dose. The thyroid cancer may or may not have been aggravated by radiation from the numerous CT and PET scans I’ve had, to look out for lymphoma recurrences (my doctors say it’s unlikely that the radiation from the scans contributed to the thyroid problem, but I do know the thyroid gland is the body’s canary in the coal mine with respect to radiation exposure — bottom line is I’ll probably never know for sure).

Because the type of lymphoma I have is an indolent form — one that can float beneath the diagnostic radar for years, and when it does recur is considered incurable but treatable — I’ll never be able to take comfort in being declared  cancer-free. But that’s OK. Life is good, I’m feeling fine and I’ve come to appreciate all the lessons this experience has taught me.

I’ve grown in faith, hope and love and am glad this blog has been a helpful resource to many others who are walking a similar road. From the bottom of my heart, thank you to all who have offered me support over the years.

Tuesday, November 10, 2015

November 10, 2015 - Virtue of Omission

Breast-cancer survivor Khevan Barnes describes, in an article published today in Cure magazine online, his unique outlook on being in remission:

“As I continue to find ways to live alongside my cancer, I am reminded of two things. Firstly, I am not in a battle with my disease. I am a conscientious objector. Cancer exists, and it may very well be present in my body, but I do not support it, either morally or spiritually. And secondly I am not in remission, I am in omission. No matter what the tests show, I categorically reject the notion of cancer diminishing my life experience.” (“An Existence Beyond Cancer,” November 10, 2015)

Hmmm... cancer survivors in omission. It’s got a ring to it. Barnes is calling on us survivors to strive to omit cancer from our lives — meaning an intentional decision on our part not to let it dominate our thinking.

The canon lawyers warn of sins of omission. Well, in this case, omission is a virtue.

The theologian Soren Kierkegaard is famous for saying,  “Life can only be understood backwards, but it must be lived forwards.” I think Barnes is echoing that thought. Yes, we survivors need to look back, and often, as we continue to make sense of our experience. For better or for worse, our cancer has made us who we are today. None of us asked for that formative struggle. It came to us unbidden. We would have run from it if we could.

Yet, cancer need not continue to call the shots in our lives. Yes, many of us are in remission — or, as Barnes prefers to say, in omission. Remembering what has gone before, and honoring that memory, we tell it to go back into its hole and allow us to live into God’s future.

Thursday, October 22, 2015

October 22, 2015 — What Makes a Cuban Afraid

Today I read an article from the New York Times profiling Elaine Diaz, a Cuban who has set herself up as an independent journalist in her country. Her news organization is called, in English, Community Journalism.

She’s a pretty gutsy young woman. While not exactly a dissident — she steadfastly refuses to adopt that title, so as not to get on the wrong side of the Cuban government — she does try to go her own way with the news stories she publishes. So far, the government is letting her proceed without too much harassment.

What really struck me about the article was a quotation near the end, in which Elaine explains what it is she most fears. It’s not what you think.

It’s medical care in the United States.

Really.

Elaine studied journalism at Harvard before returning to Cuba. The interviewer asked her, “How did your year in Boston change your perceptions of America and Americans? What were the most pleasant and unwelcome surprises?”

Her response:

“I realized American journalists suffer from many of the same kind of issues I faced in Cuba. I commiserated with them and realized the scope of the financial crisis our industry is struggling to overcome. The hardest thing was getting sick, and realizing that the deductible of my insurance policy was incredibly high. Once, I sent a photo of a rash on my hands to a Cuban doctor in Sierra Leone so he could diagnose it. I have never felt so afraid of getting sick as I did during those 10 months in the United States.”

Think about the implications of that statement. Cuba is a third world nation. Despite its many economic problems, its government has, for many years, put a great deal of money into healthcare. Cubans may lack many things, but good medical care is not one of them. So excellent is the Cuban healthcare system that Cuba has sent some of its best doctors all over the world, visiting other third world nations to help provide medical care.

So, when this Cuban student comes to the United States to study at Harvard for a year, her greatest fear is getting sick with an expensive illness.

Presumably, Harvard offered her some kind of student medical insurance as part of her financial package. Yet, even as an insured person she still felt the need to send a photo of her hands halfway across the world, so a Cuban doctor in Africa could diagnose the rash that had appeared on them.

If Cuba can build a world-class medical system on a shoestring budget, with care provided entirely by the government, then why can’t we figure out a way to make the move to single-payer healthcare?

Thursday, September 03, 2015

September 3, 2015 - We Didn't Choose It

I ran across a remarkable essay today, called "An open letter to healthy people from a former healthy person." The author is Charis Hill, a young woman of Sacramento, California, who lives with a chronic inflammatory arthritis called Ankylosing Spondylitis (no, I hadn’t heard of it before reading her essay).

Charis writes of how she struggles to define herself to those she meets as someone other than a chronic disease sufferer (who wants to be known as a sufferer, anyway?). From her essay:


"Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas. Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us...."

Chronic illness is a life-transforming experience. After the rock-my-world disruption of diagnosis — and after we’ve got some months of treatment under our belts — we find we are different, as a result of what we’ve gone through and continue to go through.

There are significant losses that are sometimes hard to describe to others:

"We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will."


Charis wisely resists the tendency some of our neighbors have to clap us on the back and tell us how commendable we are for our "courageous fight." Of all the things people said to me during my months of chemotherapy, it was this sort of comment that rang most hollow. I didn’t want to be commended for being sick. I hadn’t chosen it. If I’d had the choice, I would have run the other way and cheerfully claim the label of coward.

It’s hard to own the adjective "courageous" when we have no choice in the matter.

Charis evidently feels the same way:

"We are not strong, we are not admirable, we are not role models because we woke up and chose to be. We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior. What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight."


Amen.

Monday, August 03, 2015

August 3, 2015 - Thief or Messenger?


Being diagnosed with cancer — especially if it happens earlier than the twilight of a full lifespan — can be a faith-shaking experience. I found it to be so with my diagnosis at age 49. Much of this blog has been a journal of my continuing efforts to understand the spiritual dimensions of this medical reality.

On this past weekend’s episode of PBS’ Religion and Ethics Newsweekly, I heard a fellow cancer survivor address this aspect of the cancer experience.

Father Cassian Folsom is abbot of the Benedictine monastery at Norcia, Italy.  Norcia (sometimes spelled Nursia) is the birthplace of Benedict, the founder of western monasticism in general and the Benedictine order in particular. In 1998, Father Cassian moved from St. Meinrad’s Abbey in Indiana to re-establish the Benedictine monastery at Norcia. That monastic community had been dissolved in 1810 under the rule of Napoleon.

Benedictine monasticism is now thriving again in the birthplace of its founder, but Father Cassian has been faced with a new, very personal challenge. Several years ago, he was diagnosed with multiple myeloma. He is now in his second remission.

You can view the interview here (the segment in which Father Cassian speaks about his medical situation is found at about 5:45):



The interviewer, Judy Valente, was asking Father Cassian whether he, as a monk, felt he somehow deserved a better deal from God than other people, when it came to his cancer diagnosis. Here’s what he said:

“It’s just a part of life, that’s all. I would say this: we can look at death as a thief or a messenger. A thief comes and steals what is most valuable to us, and so we’re afraid. A messenger who comes to tell us that our beloved is at the door, we respond much differently, don’t we?”

Those who are inclined to view cancer as a vehicle for divine justice may be perplexed when a person with a religious vocation is diagnosed. At times, I’ve gotten that reaction from others. Father Cassian gently deflects that line of questioning: “It’s just a part of life, that’s all.”

Cancer — even a cancer that goes into remission or is cured — is an abrupt reminder of the inevitability of death.

What the Abbot says next is, to me, what’s truly memorable. He says we can regard death as either a thief or a messenger. That decision on how to interpret the meaning of our cancer can make all the difference.

If we regard cancer as a thief, the only sensible response is to bolt the door — or, if our uninvited guest has already crossed the threshold — to energetically fight it off.  Fear and anger are the emotions associated with such a response (hence, military metaphors like a patient “battling with” cancer).

Yet, if we entertain the possibility that cancer could be a messenger, that it may have something valuable to teach us, then our response is different. We probably won’t open the door and invite it in for tea, but we’ll at least take some time to discern what message it’s bearing.

I’ve had a strong sense throughout this process — and have written about it upstream in this blog — that an early cancer diagnosis can cause a person to race through the normal stages of adult development and begin confronting issues others don’t begin to address until they’re in the retirement home. I think this may be what Father Cassian is getting at when he speaks of cancer as a messenger.

The spiritual question is: Do we have ears to hear?

Tuesday, July 28, 2015

July 28, 2015 — Your Cheatin’ Cancer

An item in yesterday’s New York Times provides a different perspective on cancer and how it operates within the body.

George Johnson writes about cancer as an evolutionary cheater.

The idea that life began in “primordial soup” with single-celled organisms is well-known. The truly remarkable thing is that those microorganisms learned how to cooperate with one another, developing specialized functions useful to the larger aggregation of cells.

“Each of these collectives,” writes Johnson, “is held together by a delicate web of biological compromises. By surrendering some of its autonomy, each cell prospers with the whole.”

Now, here’s where cancer comes in:

“But inevitably, there are cheaters: A cell breaks loose from the interlocking constraints and begins selfishly multiplying and expanding its territory, reverting to the free-for-all of Darwin’s pond. And so cancer begins.”

It’s possible to trace this cellular cheating phenomenon across the full range of living organisms, from the most primitive to the most advanced.

The cheating becomes truly destructive when, ironically, the cheater cells resist the entirely natural process of dying:

“In a healthy organism, a cell replicates only as frequently as needed to maintain the population and allow for modest growth. Cancer cells begin reproducing wildly, consuming more than their share of resources and spewing poisons that degrade the environment and reshape it to their own advantage.”

The cancer cells cease living for the good of the organism and begin living only for themselves. If that means damaging or destroying some of the cells around them, so be it. Individual survival at any cost is the cheater’s motto. Sounds a little like libertarianism, no?

Many cancer cells develop their own collective within the larger organism — cooperating with other nearby cancer cells, but not so much with the larger body. Some malignant cells develop specialized functions within their sub-collective. The cheaters come together in something resembling gangs.

So, the disease we’re seeking to overcome is a cheating, selfish aggregation of cells.

Makes it a bit easier to go after these cheating cells with all the therapeutic weapons in the oncologists’ arsenal, doesn’t it?

The ultimate irony is that, if the cancer succeeds in bringing about the death of the organism, it dies too. Ultimately, cheaters depend on others they can cheat.

Wednesday, June 03, 2015

June 3, 2015 — Rituximab’s Latest Dance Partner

Some encouraging news from the world of lymphoma research:

“Polatuzumab plus rituximab in relapsed/refractory follicular lymphoma showed high overall response rates at two doses of polatuzumab, with a higher complete response rate at 2.4 mg/kg, data presented at the 2015 American Society of Clinical Oncology (ASCO) annual meeting have shown....

Researchers enrolled 45 patients with relapsed/refractory follicular lymphoma and assigned them to receive polatuzumab at 2.4 mg/kg or 1.8 mg/kg with rituximab 375 mg/m2 every 21 days until disease progression or unacceptable toxicity.

Results showed that overall response rates were 76% (19/25) and 75% (15/20) in the 2.4 mg/kg and 1.8 mg/kg groups, respectively.”


Rituximab — which I received, in conjunction with the CHOP chemotherapy cocktail in 2006 — continues to be the gold standard in treating non-Hodgkin lymphoma. For refractory (recurring) disease, the doctors are continually trying new combinations of rituximab with other drugs. This combination — for indolent disease — is the latest variation.

Keep at it, researchers!

Friday, May 22, 2015

May 22, 2015 — Dying and Unafraid

Anyone who’s read widely about religion in America knows the name of Phyllis Tickle. As the longtime religion editor for Publisher’s Weekly, she’s had a great influence on contemporary religious writing. In recent years, she’s garnered acclaim for several books of her own, most notably The Great Emergence. These have sought to make some sense of the rapidly-changing American religious landscape.

She hasn’t written much about her own faith journey, though — or, at least, nothing I’ve seen in print. She’s been diagnosed, now, with Stage 4 lung cancer and has been told that her condition is not curable.

Maybe that diagnosis has freed her to share more deeply about her inner life. In a Religion News Service interview published today (“Author Phyllis Tickle faces death just as she enjoyed life: ‘The dying is my next career’”), she shares the details of a near-death experience she had as a young woman of 21. She’d been given an experimental drug to prevent a miscarriage, and things went south after that:

In the middle of the night, she stopped breathing; her husband, a medical student at the time, was able to revive her long enough to get her to the hospital.

“Mine was a classic near-death. So, not much to say,” she begins. “I was dead.


“I was like a gargoyle up in the corner of the hospital room,” she continues. “And I remember to this day looking down and watching Sam beat on me again and screaming for the nurses, and the nurses coming with the machines and the whole nine yards. And then the ceiling opened and I just went out the corner and into a tunnel, which was grass all the way around. Ceiling, sides, the whole thing.

“And I went to the end of the tunnel to this incredible — people call it ‘the light.’ I guess that’s as good a name as any. But an incredible peace, a reality, unity, whatever. The voice, which was fortunately speaking in English” — she laughs again — “said, ‘Do you want to come?’ And I heard myself saying, ‘No, I want to go back and have his baby,’ meaning Sam.”

She recalls that she turned around and went back down through the hole in the ceiling and into her body.


Her analysis, all these years later?

“You’re never afraid of death after that,” she told the interviewer. “I’m sorry. You could work at it but you’d just never be afraid of it. … You don’t invite that kind of thing. It’s a gift. It’s not like you can prepare for it or anything. It’s part of the working material you’re given.”

Such experiences are truly a gift — both for those who have them and for those who hear about them.

Tuesday, May 12, 2015

May 12, 2015 — The Mountain Lion in the Fridge

“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE...”

That’s the beginning of a rather creative blog post by a cancer survivor named Caitlin Feeley. It brought a smile to my face because it’s so accurate.

Not the mountain lion in the fridge part, of course: but the things various people say to you as you’re trying to claw your way up the mountain where the only creature capable of fighting off the mountain lion — a bear — happens to live. Things like, “That’s not really a mountain lion, it’s a puma,” and “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

I don’t feel right about cutting and pasting the whole thing here, but here’s a link where you can read the whole piece.

Well done, Caitlin. You captured the experience.

Sunday, April 19, 2015

April 19, 2015 — Blood Test for Cancer?

This is huge.

Today’s New York Times tells of some research now under way that could lead to a simple blood test that could be used to diagnose cancer, particularly blood cancers like lymphoma (Gina Kolata, “Blood Test Shows Promise as Alternative to Cancer Biopsy,” New York Times, April 19, 2015)

From the article:

“The hope is that a simple blood draw — far less onerous for patients than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring the treatment in case the cancer develops resistance....

‘This could change forever the way we follow up not only response to treatments but also the emergence of resistance, and down the line could even be used for really early diagnosis,’ said Dr. José Baselga, physician in chief and chief medical officer at Memorial Sloan Kettering Cancer Center....

A National Cancer Institute study published this month in The Lancet Oncology, involving 126 patients with the most common form of lymphoma, found the test predicted recurrences more than three months before they were noticeable on CT scans.”

The new test follows a novel approach: searching for tiny snippets of cancer DNA that the body sheds into the bloodstream. The DNA shards are tiny and short-lived (they last for only a few hours), but extremely sophisticated blood tests are evidently now able to pick out this particular needle-in-a-haystack.

Early signs are that the test may be more useful for follow-up with existing patients who are known to have had tumors than for first-time diagnoses. It doesn’t appear to be the sort of test that could successfully be given as a routine screening for healthy patients:

“Another possible application — early diagnosis of cancer — is trickier. If a blood test showed cancer DNA, what would that mean? Where is the tumor, and would it help to find and treat it early? Some cancers stop growing and even go away on their own. With others, the outcome is just as good if the cancer is found later.”

If this blood test is successfully developed for clinical use, it could greatly reduce the need for CT and PET scans in monitoring patients during and after treatment.

As I’ve said, this is huge (although, admittedly, still just a theory at this point). I’ll be watching for further news on this.

Monday, April 13, 2015

April 13, 2015 — Bankruptcy Fears

Here’s a factoid I ran across today, in an article in Cure magazine. Over one-third of cancer patients, in a recent study, identified bankruptcy as one of the worst fears they’re facing as a result of their treatment.

Think about that: one-third! (Actually, it was a little worse than that: 37.1 percent). That’s an awful lot of worried, seriously-ill people, who are obsessing over something not directly connected to their disease.

Now, here’s the real kicker. From the article:

“Most of the [480] patients were covered by an employer-based plan or some form of Medicare; 18 participants had purchased their coverage through a health insurance marketplace; and five patients reported not having insurance of any kind and being unable to afford a plan.”

Most of the people who such worries about going bankrupt have insurance! So much for insurance providing peace of mind. What does that say about the quality of the insurance safety net so many are depending on?

Even worse than worrying about inadequate insurance is the worry about having no insurance at all. A great many survey respondents spoke of certain trade-offs they’ve had to make, to keep their medical funding in place, “such as choosing doctors based on co-pays, cutting back on food, activities — including education — to save money, and becoming isolated from family members. 'Even if I starve to death, I will not let go of my insurance. That is my life,' said one woman.”

It’s a sad commentary when a seriously-ill person is reduced to describing her insurance policy as her life.  For far too many in our country, medical insurance is indeed a life-or-death matter.

Time for national single-payer health insurance — such as nearly every other industrialized nation already has — wouldn’t you say?

Thursday, April 09, 2015

April 9, 2015 — Obscenity and Glory

Easter’s come and gone. The day, anyway. For Christians who follow the liturgical year, the season lives on, in the forty days between Easter Day and Pentecost.

Today I ran across this quotation from a collection of sermons by Frederick Buechner, The Magnificent Defeat (HarperCollins, 1985). Buechner is a preacher’s preacher. Although he doesn’t step into a pulpit that often, his influence as a writer is widespread, and much-appreciated by those who craft sermons week in and week out.

Here’s the excerpt:

“Anxiety and fear are what we know best in this fantastic century of ours. Wars and rumors of wars. From civilization itself to what seemed the most unalterable values of the past, everything is threatened or already in ruins. We have heard so much tragic news that when the news is good we cannot hear it. But the proclamation of Easter Day is that all is well. And as a Christian, I say this not with the easy optimism of one who has never known a time when all was not well but as one who has faced the Cross in all its obscenity as well as in all its glory, who has known one way or another what it is like to live separated from God. In the end, his will, not ours, is done. Love is the victor. Death is not the end. The end is life. His life and our lives through him, in him. Existence has greater depths of beauty, mystery, and benediction than the wildest visionary has ever dared to dream. Christ our Lord has risen.”


What I like about this expression of Easter faith is its realism. There no illusions, here, that life is never hard. There’s no attempt to sell the idea that God offers the baptized a “Get out of suffering free” card. There are plenty of purveyors of spiritual snake oil out there who carry around whole stacks of such cards, and hand them out as a come-on. (It works. They always seem to be surrounded by hopeful hordes waving dollar bills.)

Buechner’s got too much integrity for that. For him, the cross is not an item of sparkly gold jewelry, but an “obscenity” that — paradoxically — leads to glory.

For people with cancer, or anyone else who’s on a hard road, there’s hope in that vision. Hope doesn’t come from finding a way around life’s struggles and heartaches. It comes from resolutely forging on through them — knowing that, on the other side, someone’s waiting for us. Someone who’s been through it, too.

Monday, March 23, 2015

March 23, 2015 — God is Bigger

J. Todd Billings is a Reformed Church in America minister who’s on the faculty of Western Theological Seminary in Holland, Michigan. Like me, he’s dealing with an “incurable but treatable” blood cancer diagnosis: in his case, multiple myeloma. He’s written about his cancer experience in a new book, Rejoicing in Lament: Wrestling with Incurable Cancer and Life in Christ (Baker,  2015).

I intend to get the book and read it, but in the few teaser excerpts provided by the publisher, I’ve heard echoes of my own experiences of years past.

I was particularly impressed by an anecdote he tells in the opening pages, of receiving a card from a 15-year-old girl from his congregation with Down Syndrome. By way of encouragement, she wrote: “Get well soon! Jesus loves you! God is bigger than cancer!”

Billings identifies some pretty good theology in the girl’s words:

“While I had received many cards in the previous days, this one was different. ‘God is bigger than cancer!’ Yes. She did not say, ‘God will cure you of this cancer,’ or ‘God will suffer with you.’ God is bigger than cancer. The fog is thick, but God is bigger. My cancer story was already developing its own sense of drama. The sky was closing in, enveloping my whole world so that nothing else could creep in. But God’s story, the drama of God’s action in the world, was bigger. The girl in my church wasn’t denying the fog or the loss but testifying to a God who was greater, the God made known in Jesus Christ, who shows us that “the light shines in the darkness, and the darkness did not overcome it (John 1:5)….”

Billings also finds comfort in the famous first Question and Answer of the Heidelberg Catechism:

“‘What is your only comfort in life and in death? That I am not my own, but that I belong — in body and soul, in life and in death — to my faithful Savior Jesus Christ.’ Like the note from the fifteen-year-old girl in my church, it breaks through the fog of ‘terminal’ and ‘incurable’ and ‘cancer’ by pointing us to the bedrock of what matters: that I belong, in life and in death, to Jesus Christ. My life is not my own….”

I like this concept of the bigness of God, when it comes to living with cancer. The first tendency of many of us, as we learn of a cancer diagnosis, is to allow the cancer to grow in our minds until it crowds out everything else, even our faith. This amounts to making the cancer into an idol, an object of false worship. The god to whom that idol bears witness is a malevolent deity, indeed. But that doesn’t stop us — in horrified fascination — from ascribing to the cancer god all sorts of power over us.

A healthy understanding of the bigness of the one, true God is the way to overcome that false worship. As the teenager with the mighty heart bears witness, cancer’s big, but God is bigger.

Billings goes on to say:

“This place of not knowing is one that sometimes feels like a thick fog for me right now. I could have five years, ten years, or decades. Who knows? Not me. We belong to God — the Alpha and the Omega, who holds time In his hands — but we are not God. We are mortal, and we don’t know when we will die. There is a fog for all of us, whether we realize it or not, that as creatures we do not live in the world as individuals who own it but as temporary stewards of God’s good gifts.”

How easy it is to reduce God to the sum-total of our needs and desires! “Where are you, O God?” is so often our demand, when we learn that our expectations of a long and healthy life are threatened by a cancer diagnosis.

Yet, if God is indeed bigger than our dreams and desires — bigger, even, than our very lives — then isn’t it just a trifle audacious for us to shake our fists at the heavens, demanding an answer to that question?

It’s only human to voice such angry laments, from time to time. I don’t think God is particularly offended by that sort of thing. Because God is bigger. Yes, indeed.

(Quotations from J. Todd Billings,  Rejoicing in Lament: Wrestling with Incurable Cancer and Life in Christ [Baker, 2015], selections from pp. 1-7.)