Monday, June 05, 2017

June 5, 2017 — Keep Waiting, Keep Watching

I've just returned from Memorial Sloan-Kettering's satellite facility in Basking Ridge, New Jersey. I had a routine ultrasound followed by a consultation with my surgeon, Dr. Jay Boyle. Routine, yes, but - since I'd had a biopsy of a lymph node on the left side of my neck several months ago that revealed recurrent papillary thyroid cancer - I knew this would be a discussion about treatment options. They're also pretty certain that several small nodules that have been detected in my thyroid bed (where the thyroid used to be) are also cancerous, but those are too inaccessible for a needle biopsy.

I also knew that, because Dr. Boyle saw no need to move my appointment up after news of the biopsy results came in, this is a relatively slow-moving situation.

Bottom line is, we decided to continue watchful waiting for now. I'd told the nurse that was my preference, based on what I knew, and she told Dr. Boyle of my wishes before he came into the room. He's agreeable with that. He said that, as far as he's concerned, we could go either way. He did say that, if we decided on surgery, he'd recommend removing a whole lot of lymph nodes as well as the nodules in the thyroid bed, because it's not easy to keep going back in there and remove a lymph node here, a lymph node there. With each new surgery, there's more potential for damage to the tissues of the neck area. He said that, based on the location of the nodules, surgery would present about a 10% chance of permanent damage to the nerve that controls the vocal cords. I speak for a living, so permanent hoarseness and weakness of voice is not something I'd consider lightly.

I asked him where in the body thyroid cancer usually metastasizes to, and he said the lungs and the bones are the most common. In either of those cases, though, he said it's usually treatable with either further radioactive iodine treatments or beam radiation.

The ultrasound showed no change in the size of the thyroid-bed nodules, nor of the couple of abnormal lymph nodes they've been watching, but it did show a new, very small lymph node in the same area that also looks abnormal. The doctor said he could only barely feel any of those lymph nodes as he palpated my neck.

The other doctor who's involved with this decision is my MSKCC endocrinologist, Dr. Stephanie Fish. Dr. Boyle tried unsuccessfully to get Dr. Fish on the phone to find out why, exactly, she'd ordered the biopsy - because he said that, in his experience, when a doctor orders a lymph node biopsy, it's generally because surgery is a likely outcome (if it turns out there's a malignancy, of course). When I reminded him of my non-Hodgkin lymphoma history, he said that could explain it - there would be a need to determine which of my two kinds of cancer was causing the swelling in the lymph nodes. Different cancer, different treatment protocol. (We now know, of course, it’s the thyroid cancer that’s recurred, not the lymphoma.)

I see Dr. Fish on July 31st. They drew blood today that will provide her with thyroglobulin numbers and other crucial information she needs, prior to that appointment.

It's kind of nerve-wracking to wait all that time, and a little frustrating that the two doctors weren't on the same page prior to my arrival today. Dr. Boyle said he will talk to her, though, and I'm sure he'll call if there's any change.

I'm OK with this outcome. I'd rather not face another surgery at this time, if if can be avoided. With years of watchful waiting for my NHL behind me, I'm comfortable with the "don't shoot till you see the whites of their eyes" approach. Sure, I'll continue to live with uncertainty, but what else is new?

Today's appointment confirms for me how important it is to be go into such meetings well-informed, and to speak up about my own preferences as a patient. Some treatment decisions are less than clear-cut, clinically speaking, which leaves significant room for patient preference to be taken into consideration.

Next appointment with Dr. Boyle is in 6 months. As I've said, I see Dr. Fish in just under 2 months.

Monday, May 22, 2017

May 22, 2017 — Enough with the Battle, Already

I’ve written before about the many reasons why the familiar military imagery as applied to cancer survivors — her “courageous battle with cancer” — is not the most sensitive choice of words. I’ve seldom seen this topic explored so eloquently nor so concisely as in an article in the most recent issue of The Presbyterian Outlook.

The author is Ashley-Anne Masters, and the article is “Cancer Doesn’t Discriminate Between the Sinners and the Saints” (Presbyterian Outlook issue of May 29, 2017, pp. 48-49). She’s Interim Manager for Spiritual Care and the Heartlight Program at Lurie Children’s Hospital of Chicago:

“One side effect of cancer treatment that's as gross as nausea is the battle imagery. I can't stand hearing that someone who died from cancer ‘lost her battle.’ Anyone who ever endured cancer invading his or her body is anything but a ‘loser.’ The battle imagery is dangerous and painful. It implies that when someone dies of cancer, he died because he didn't fight hard enough. It implies that if someone chooses palliative treatment in the face of terminal diagnosis, she is giving up or not fighting.

It's also an unpleasant side effect for those living with cancer or thriving in remission. We celebrate and are grateful, yet battle imagery can add to a patient's symptoms of survival guilt. It does not mean he isn't (or wasn't) in the fight of his life during treatments. It does not mean she doesn't fear recurrence at annual scans. It does not mean they aren't strong and brave. But saying they ‘won the battle’ when they, too, have lost friends, colleagues and family members to cancer implies that they are somehow superior to the people they miss. Let's assist in savoring their celebrations and milestones. Let's not taint their gratitude and gumption with a prescription for guilt.”


Another reason, of course, why the battle imagery misses the mark — one that Ashley-Anne doesn’t mention, and in fact gets a little bit wrong — is that cancer is actually not an invasive disease, in the same way a bacterial infection is invasive. We don’t “catch” cancer. Cancer cells are manufactured by our very own bodies as a result of genetic mutations. While there’s sometimes an external cause that can be identified — as asbestos exposure is a leading cause of mesothelioma — it’s not the carcinogen that makes people sick, but their own body’s response to the carcinogen.

In cancer, certain cells of our body — for reasons that are often inexplicable — turn against other cells of our body: surrounding, quarantining and devouring them. That’s the true battle of cancer: not patient vs. disease, but cell vs. cell. The patient is the battlefield, not the steadfast soldier.

Visualizing ourselves “battling” cancer means we’re doing battle with our own bodies, and that’s hardly a helpful way of looking at it.

Friday, March 24, 2017

March 24, 2017 - Moving That Fear Threshold

Today, in the online Cure newsletter, I came across an article by a cancer survivor named Barbara Carlos, who’s noticed a change in the role fear plays in her life, since undergoing cancer treatment:

“I am not sure exactly how or when it started, but somewhere in the midst of chemo, I noticed a change. Things that used to make me crazy no longer bothered me. Other things that I had thought so unimportant that they had been left perking away on the back burner for years suddenly came to a full boil. It was confusing....I kept chugging along, constantly juggling priorities and re-prioritizing them. After a while, I noticed a change in my attitude. I was no longer afraid of the little things in life. I didn’t care if I wore the wrong clothes or said something stupid in a meeting. After my last chemo, I spent a week in the hospital with neutropenia and had another two weeks of bed rest at home. I didn’t physically feel up to doing anything that required more exertion than breathing, but my brain clicked away as I lay there. By the time I started radiation, the transformation was complete. I had become fearless. In spite of the nasty burns on my chest and the pain they generated, radiation was a piece of cake compared to chemo. I had made it through chemo and I was going to make it through radiation just fine. I had faced off the Emperor of All Maladies and won the battle. I felt empowered beyond words and completely confident that I was going to win the war.”

It’s similar to the experience I’ve had, over the 10+ years of my journey with cancer. And, I know from conversations I’ve had with other survivors, that it’s true for many other people as well.

“Whatever doesn’t kill you makes you stronger,” goes the old adage. It’s especially true of cancer.

One of the things we learn as cancer survivors is that our fear threshold is moveable. What moves it is the experience of facing our fears, not running from them. When we face a hitherto unimaginable challenge and move right on through it, we’re strengthened to face other challenges that may lie ahead.

We’re not free of fear as we do so. Fear can’t be so easily banished by positive thinking, nor even by prayer. Most of us don’t pray away our fears: we pray through them.

Often, folks are inclined to match up the word “courageous” with “cancer patient,” but those of us who’ve been through it know it’s not any virtue inherent in ourselves that helps us make this transition. It’s one of those Higher Power things, as our friends in AA would say. When we’re flat on our back on an operating-room gurney, and the anesthesiologist is about to open the valve on the IV line that will send us off into unconsciousness, there’s nothing we can do in that moment to influence the outcome. We’ve got to turn it all over. We have no other choice.

Those of us who are conversant in traditional religious language turn it over to God. Others may go the Higher Power route. But whatever language best captures our experience, there are times when we can sense that fear threshold moving. And the good news is, once it moves forward, it rarely moves back again.

Thursday, February 09, 2017

February 9, 2017 — Confirming What We Already Knew

Three days ago I made the trip to Memorial Sloan-Kettering in Manhattan for a repeat of the biopsy that didn’t work out so well. That was actually two biopsies: one of some lymph nodes in the left side of my neck that have become enlarged, and the other of some small nodules that have developed in my thyroid bed (the area where the thyroid used to be).

I evidently misunderstood what the nurse told me in an earlier phone conversation. Turns out, the lymph-node biopsy was successful after all, yielding enough tissue for analysis. The problem was with the nodes-in-the-thyroid-bed biopsy. This is the one they wanted me to come in to repeat, this time to Manhattan rather than to Basking Ridge.

That didn’t happen, though. The interventional radiologist in New York did an ultrasound of my neck, and after looking at the results she concluded it was too difficult, even risky, to biopsy the nodules. They’re located very deep inside the neck, and they’re surrounded by so many blood vessels that there would be the risk of internal bleeding that could be hard to control. Her largest needle is barely long enough to reach that spot, she explained, and the longer the needle, the harder it is to control its tip precisely. She promised I’d be hearing soon about the results of the lymph node biopsy, once the other doctors have had a chance to confer.

Yesterday, I got a phone call from my endocrinologist, Dr. Stephanie Fish, who ordered the biopsies. She confirmed that there is papillary thyroid cancer in the lymph nodes, the same type that had showed up in nodules on my thyroid gland five years ago.

This is further confirmation of what we already knew — or had at least surmised. Dr. Jay Boyle, the surgeon who removed my thyroid, told me back in July that the nodules were almost certainly a recurrence of thyroid cancer.

But there’s still no particular hurry to do anything about it. The protocol continues to be “watch and wait.” Dr. Fish told me that Dr. Boyle sees no reason to move up the date of my next scheduled appointment with him, which is in June.

I’m OK with this. It’s taken me some years as a cancer survivor to wrap my mind around the concept, but “watch and wait” is not a matter of ignoring the issue. In certain circumstances, it’s a treatment modality in itself.

To paraphrase ol’John Milton, they also heal who only stand and wait.

Thursday, February 02, 2017

February 2, 2017 - Again with the Needle

Late this afternoon, I was a the gym when my mobile phone rang. Caller ID said only "New York City." Realizing it wasn't a local emergency call involving a church member, and not wanting to step off the elliptical trainer, I let it go to voicemail.

When my 30 minutes on the elliptical were ended, I listened to the message. It was from Memorial Sloan-Kettering. Please call back because one of the nurses has a message for you from Dr. Fish.

OK, this is it, I said to myself. My biopsy results.

I called back, and was eventually connected to the right nurse. Yes, she did have my biopsy results: just not the results I expected.

The tissue samples from the lymph nodes were not diagnostic. (In other words, inconclusive.) Dr. Fish wants you to come in - to the main hospital in New York this time - and repeat the biopsy.

That was surprising to me because the needle-wielding doctor at the MSKCC Basking Ridge facility had seemed so confident she'd gotten a good sample.

Someone's going to phone me tomorrow to set up the appointment.

I'd call the news "a kick in the pants" were it not for the fact that getting another needle in the neck sounds worse.

Oh, well. Cancerland is full of surprises.

Tuesday, January 31, 2017

January 31, 2017 — Under the Needle

I haven’t posted anything here since last summer, because not much has been happening. Which is, of course, a good thing.

Yesterday, though, I went up to Memorial Sloan-Kettering in New York for a routine consultation with my endocrinologist, Dr. Fish. I’d had an ultrasound of the neck a week before, which told her that the lymph nodes on the left side of my neck that had been slightly swollen last summer are significantly larger now. That, coupled with a spike in certain chemical markers in my blood, indicates that thyroid cancer has very likely taken up residence in those lymph nodes, and is growing.

She recommended a needle biopsy of the lymph nodes, to confirm what we’re dealing with. (I asked her if it could be a return of the non-Hodgkin lymphoma, but she said she doesn’t think it likely. The blood test is pointing to thyroid cancer as the culprit.)

It was all very laid-back. Thyroid cancer is typically slow-moving, so there’s no particular rush about these things. For that reason, I was a little surprised a few minutes later when the doctor’s scheduler, seeking a date for the biopsy, asked, “How about tomorrow?”

I initially said no, that’s a little too soon, but when I learned the next opening she had was more than a month away, I took a quick survey of my calendar and said, “Why not? Let’s go with tomorrow.” I suppose there must have been a cancellation or something.

Which brings me to today. This morning I drove up to the Memorial Sloan-Kettering satellite facility in Basking Ridge, New Jersey for my ultrasound-guided needle biopsy.

Dr. Fish had clued me in to the fact that this would be done while I was awake, without anesthesia. “They’ll give you a little lidocaine,” she told me, “to numb the skin. But it’s a very tiny needle, so you’re not likely to feel any pain.”

Well, when I got there, the diagnostic radiologist who would be conducting the biopsy said there would be no lidocaine, because the biopsy needle is actually smaller than the needle they use to inject the lidocaine. The act of numbing the skin would be more painful than the biopsy itself.

I asked her if they had any lidocaine spray around, but she said no, they didn’t. That surprised me a little, but I figured, hey, they do this all the time, it will be fine.

I’ll say it ended up being not exactly fine, but tolerable. The doctor was right, the needle is very small. I’m so used to blood-test needles by now that I barely feel them going into my arm any more, and that was true of this needle as well, penetrating the left side of my neck. I did feel a distinct pressure from the needle as it advanced deeper below the skin, though. That pressure, bordering on pain, was uncomfortable, but the lidocaine wouldn’t have done much about that in any event.

Three punctures later, it was all over. I was lying on my side during that part of it, so the doctor told me I could watch it on the ultrasound screen if I wanted. I decided to do so. It was odd, watching the tip of the needle penetrate my lymph node, move up and down a few times, then come back out again.

Mission accomplished with the lymph nodes. Then, it was on to step two. Dr. Fish had also ordered a biopsy of the abnormal nodules that have appeared in my thyroid bed (where the thyroid used to be). Those are pretty stable, not having grown since last summer, but she figured that, while I was on the table, they ought to go ahead take a look at them as well.

This involved me lying on my back with my head stretched over a pillow positioned under the back of my neck. The target nodule was considerably smaller and a good deal deeper than the lymph nodes.

Same deal: very tiny needle, no anesthetic, but this one was aimed just below the base of my neck, smack dab in the center. This was a different sort of experience. Again, the surface puncture was barely noticeable, but the digging around deep inside crossed the boundary from pressure into pain. The doctor could tell I was in pain, and decided to stop after just one sample. She said she was reasonably sure she didn’t get enough tissue from the tiny nodule for a good result, but she didn’t want to proceed any further because I was clearly uncomfortable. The nodules weren’t the main target for today, she explained: the lymph nodes were.

I was grateful. If it had been strongly necessary, medically speaking, I would have been willing to tough it out. But I was just as glad when she decided to call a halt.

Results should be in within two or three days. It will be up to Dr. Jay Boyle, my thyroid surgeon, to communicate the results and begin the conversation about next steps.

Surgery will almost certainly be in my future — he told me that last summer — but the big question will be, when? The pathology results will tell us how aggressive my particular variety of cancer is.

It could be pretty soon, or it could be a matter of more watchful waiting.

The question will also be, what? Just an excision of the close-to-the-surface lymph nodes (fairly easy), or a removal of the nodules in the thyroid bed as well, with the risk of possible damage to the vocal cords?

Watch this space.

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.

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!