Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else.
Came across this little gem of an article today, in the online edition of Coping With Cancer magazine. It’s by Anne Lawton, an oncology nurse, and it’s about hope.
Hope, she's come to realize, is “the only word that matters” in her business.
Anne’s learned that, from the patients’ standpoint, the nature of hope changes over time. At first:
“People hope their doctor is good. They hope they make it through surgery, and they hope their cancer is treatable. They hope they can tolerate the chemotherapy.”
Later on in the cancer journey, many find themselves hoping for different things:
“They hope for a cure. They hope for a nice, full head of hair, eyelashes, and eyebrows. They hope the neuropathy and the other side effects go away. It's no longer just survival they hope for; they want their life back. They have a lot to do, and they hope the cancer never comes back.”
And if it should happen that the cancer does come back? Hope changes yet again:
“They hope for a life worth living, with few cancer-related side effects. They hope to live long enough for graduations, grandchildren, weddings, or that trip of a lifetime. They hope to complete their "bucket list.”
Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.
Viewing hope as a continuum, can we really say it’s the same hope at the end of such a journey as at the beginning? I’d say yes, it is – although the hope has changed and matured. It’s grown, just as the patient has grown all through this troubling, painful, emotionally-taxing – and, yes, sometimes even spiritually-uplifting – journey.
1 Peter 1:3 celebrates how God “has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead.”Living hope. I think that ol’ apostle was onto something.
By God’s generous grace, hope is alive. It grows and changes as we grow and change. Hallelujah!
This Easter, I preached on the topic, “This Is the Life.” While, for many, it’s a phrase that conjures visions of shady cabanas on tropical beaches, shrimp cocktail and umbrella drinks close at hand, I was thinking about something different.
And no, I wasn’t thinking about what this guy means by the phrase, either:
“This is the life” is Jesus’ promise to his disciples in John 10:10, as he proclaims, “I came that they may have life, and have it abundantly.” It’s a promise they wouldn’t begin to understand until after the resurrection.
This whole matter of abundant life takes on a different cast when that life includes cancer. What does it mean to “have life abundantly” when that life, for a cancer survivor, includes a low-level sense of foreboding that’s always lurking somewhere?
I think Matthew’s account of the resurrection supplies an answer. It employs a curious turn of phrase, describing Mary Magdalene and “the other Mary” (probably Jesus’ mother), as they rush from the tomb, having heard the angel tell them Jesus has been raised from the dead. Matthew says, “they left the tomb quickly with fear and great joy...”
Whuzzat? With fear? And great joy? Sounds like an oxymoron.
No, it’s no oxymoron. Our emotions are seldom simple and elemental. They’re often mixed.
Actually, there are times in life when fear and joy do coexist. Try to imagine the first time you fell in love, and realized that person you loved felt the same way about you. Did you ever feel more alive than in that moment?
And wasn’t it also true that, having asked that special person (or having been asked) to go out on a date, and having heard that person say yes (or having said yes yourself), the thought suddenly occurred to you that you would have to actually participate in said date, and you would somehow have to avoid making an idiot of yourself? Fear and great joy!
Or, think about the most significant graduation ceremony of your life, that highest level of education you’ve completed. If you were able to attend such a ceremony, recall the joy of accomplishment you felt that day, in cap and gown, looking around at the grinning faces of all your classmates. Remember, too, the other thought that came to you at that moment: “What am I going to do tomorrow?” Fear and great joy!
Brides and grooms on their wedding day, first-time parents driving that baby home from the hospital – on these and many other occasions in life, fear and joy coexist. Not without some tension between them, perhaps, but there it is. This is the life.
The two Marys were likely feeling something similar, because the first thing the risen Jesus says to them is “Do not be afraid.”
This has nothing to do with whether or not they may happen to disbelieve what they’re seeing, or whether or not they suspect it may be some sort of ghostly apparition, some wraith vomited up from dark places to bedevil them. No, I think they realize who it is, and can at least grasp the bare outlines of the paradigm-busting wonder that’s taken place. I think the two Marys are afraid because they realize what the resurrection is going to mean for their lives.
Surely these wise women realize that, if they continue on as Jesus’ followers, and go tell the other disciples the good news they’ve just heard and seen, they’re going to unleash into the world a powerful force that there will be no stopping. From this day onward, they’re going to be riding a mighty wave that will propel them onward with terrific force – and at times that position on the crest of the wave will be a dangerous place to be.
Yes, of course they’re going to do it, of course they’re going to bring the good news to their companions. But their fear and their joy are intermingled.
This is the life. This is the new life God has given them. Yes, perhaps they recalled hearing Jesus say he’d come that they might have life, and have it abundantly, but until this moment those had been nothing more than inspiring words, a rhetorical flourish. How could they possibly have known that new life would come to them through the nail-pierced hands that now rest on each of their heads, and through the nail-scarred feet they are even now washing with their tears?
The Danish theologian Søren Kierkegaard once described this aspect of the Christian life using a very vivid image. He said that sharing the Christian faith with others is like handing them an extremely sharp knife.
A sharp knife is a useful tool. The greatest chefs, in fact, take meticulous care of their knives, sometimes even packing them into special carrying cases and bringing them home at night, so no damage will come to them. No one, Kierkegaard goes on, would think of handing a sharp knife to another person as one would hand over a bouquet of flowers. It’s just not done.
One of the first things we teach kids, in our church’s Cub Scout Pack and Boy Scout Troop, is how to safely hand a knife to another person. The boys don’t earn their “Totin’ Chip” – the special wallet card that allows them to carry a pocketknife – until they learn how to hand an open knife to a fellow Scout handle-first, and not let go of it until the other person says, “Thank you” – indicating he’s got it safely in hand. That’s because a knife is a useful implement, but it’s also dangerous. You’ve got to have a healthy fear of knives before you can use them safely.
Faith is just that sort of tool for living life as a cancer survivor. Most of us aren’t going to be cured, physically, by our faith. For whatever reason, God doles out complete spiritual healing only rarely, and according to no logic we can understand. Yet, if we’ve learned how to take this elegant tool in hand and use it safely - preventing it from slipping and causing further injury - we’ll find ourselves much better-equipped for living through days and years of remission and relapse, of tests and treatments.
Christian faith doesn’t put an end to fear. It does, however, take the natural, human fears we all have and puts them in perspective. Without the inner peace that comes of faith – which we Christians describe as knowing the risen Christ – the ordinary fears of human life can rage out of control, wreaking havoc in our lives, and in the lives of those we love.
The crucial difference comes from the other part of the equation: the “great joy” that counterbalances our very human fears. We can still seek it, even in the midst of cancer. Even a cancer-burdened life is still life, and Christ has promised that, in him, we can live abundantly.
Yesterday's New York Times contained a very sensible column by Paul Krugman. He asks a question that’s really rather obvious – so obvious, in light of our national healthcare-funding woes, it’s escaped the attention of a great many who ought to be asking it:
“Here's my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as "consumers"? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car - and their only complaint is that it isn't commercial enough.
What has gone wrong with us?” – Paul Krugman, “Patients are not Consumers,” New York Times, April 21, 2011.
This is more than a mere quality-of-life question. It’s got big implications for economics, as we continue to struggle through our national healthcare-funding debate:
“Consumer-based" medicine has been a bust everywhere it has been tried. To take the most directly relevant example, Medicare Advantage, which was originally called Medicare + Choice, was supposed to save money; it ended up costing substantially more than traditional Medicare. America has the most ‘consumer-driven’ health care system in the advanced world. It also has by far the highest costs yet provides a quality of care no better than far cheaper systems in other countries.”
The problem is that there are an awful lot of people out there who profess an unquestioning, fundamentalist faith in what economist Adam Smith called, way back in 1759, “the invisible hand” of the market. For him, it was probably just a metaphor, but for his latter-day followers, it’s become a virtual deification of free enterprise. Attached to that invisible hand, in their fantastic imaginings, is a new Olympian god, who effortless regulates human affairs through astute transfers of capital.
That would be of little significance, were not living, breathing human beings mightily affected by such transfers.
That makes it, as Krugman correctly points out, a moral issue.
It seems lymphoma treatment isn’t the only cancer-treatment field that’s rapidly changing. Today I come across an article on my other cancer – thyroid cancer – indicating that one treatment that’s been talked about for me is currently being reconsidered by the experts.
I’ve been hearing all along that, once my thyroid is removed surgically, I’ll probably need to follow up with a single radioactive-iodine treatment. This is a dollop of radioactive material encased in a small pill, that I would swallow several weeks after surgery. Because thyroid tissue thirstily slurps up iodine, if it should happen that there’s any thyroid tissue remaining in my body after the surgery, the radioactive iodine would zap it.
Now, it turns out the radioactive iodine is risky in itself, and is possibly the cause of some secondary cancers. Recent studies indicate that a more nuanced treatment decision now needs to be made, weighing the likelihood that there is indeed any remaining malignant thyroid tissue against the slight – but real – risk of the radioactive iodine running amok and causing another cancer elsewhere.
The American Thyroid Association is now saying that radioactive iodine “should be used selectively and [only] in patients with intermediate and high-risk thyroid tumors.”
So, with a nodule presently at 1.5 centimeters, how’s my tumor classified? I didn’t ask Dr. Boyle about precise staging, so I can’t be sure.
That’s one thing I’ll need to remember to ask the doctor about, as the time of surgery draws near.
In the meantime, it’s Holy Week, and I’ve got a whole lot of other things on my mind. Sermons to write!
Time to bring you all up to date on my decision-making about the thyroid surgery.
Last Wednesday I drove up to Memorial Sloan-Kettering Cancer Center’s satellite outpatient facility in Basking Ridge, New Jersey for a consultation with otolaryngologist Dr. Jay Boyle, who had been recommended to me by my lymphoma second-opinion physician, Dr. Carol Portlock.
Everything went smoothly at the Basking Ridge facility, which is in an impressive new building located a convenient one-hour drive from our home. After the usual filling-out of forms and a quick interview with an intake nurse, Dr. Boyle came right in and gave me all the time I needed to ask my questions.
I asked about whether I’d need to have the whole thyroid removed or whether a lobectomy (removing one lobe, or half the gland) would be a possibility. He said the scan results confirm there’s malignancy in both halves of the thyroid, so it all has to come out.
A follow-up radioactive iodine treatment is a possibility, but he wouldn't be able to say for sure about that until after the surgery.
Because it's a slow-moving cancer, we'd have a little time to think about it and choose a convenient date.
It’s highly unlikely that my thyroid cancer is in any way related to my lymphoma. Seems I’ve had a bad roll of the dice, two times running.
Dr. Boyle was very upbeat about the prognosis, as well he should be. Thyroid cancer is one of those rare malignancies that’s nearly 100% treatable with surgery. The surgery itself – while somewhat delicate, due to the thyroid’s location in the neck – is not very invasive, since the gland is very close to the surface. He explained there would be some stitches, but they’d all be internal and would dissolve on their own. A bright red scar, which he endeavors to hide as much as possible within naturally-occurring fold lines in the skin of the neck, would be visible for about a year or so, but would eventually fade so it’s only visible upon close examination.
An overnight stay in the hospital is a given, but nearly everyone goes home right after that and is able to resume normal activities in a few days. (I learned later, from one of the nurses, that MSKCC is starting to do some thyroid-removal operations as same-day surgeries.)
I do have a slight concern about a possible side-effect from the surgery, which is damage to the voice. This sometimes happens as a result of damage to one of the nerves that controls the functioning of the vocal cords, which are nearby. I explained that I may be more concerned about this than most patients, because I use my voice for a living. Dr. Boyle assured me that the national rate for this sort of complication is about 1%. “With me,” he said, “it’s a great deal lower than that.”
He dropped that statistic into the conversation in a matter-of-fact way that sounded in no way boastful (although I suppose it may appear that way, upon reading those words).
Afterwards, I spoke with one of the nurses about long-term issues, and she confirmed what I already knew, that I’ll need to take synthetic thyroid-hormone medication for the rest of my life. “If you miss a day or two, it’s no big deal,” she explained. “If you go on vacation for a couple weeks and forget to bring your pills with you, you need to find a pharmacy and get your prescription filled. Go six months without taking it, and you’re dead.”
Well, that doesn’t leave much ambiguity, does it?
I liked Dr. Boyle. There’s no doubt he’s one of the foremost thyroid surgeons around. While it’s a relatively simple operation, with a very high chance of success, why shouldn’t I go to one of the top-ranked surgeons, as long as he’s relatively close by and can fit me into his schedule?
It doesn’t hurt that he’s a Presbyterian, either. When he learned what I do for a living, he mentioned that he’s a member of the Westfield, New Jersey church.
A little while ago, I called Dr. Boyle’s office and confirmed a surgery date of Friday, May 27, at MSKCC in Manhattan (they don’t do surgery at the Basking Ridge facility). I’ll go into the city on May 2 for pre-admission testing.
I feel good about this, like I’m making good progress in dealing with it. As I said to someone else recently, when it comes to dealing with a new cancer diagnosis, it’s a real advantage to be a veteran.
Here are a couple of big changes in standard treatment guidelines for follicular NHL. According to the National Comprehensive Cancer Network, Rituxan plus Bendamustine (a single chemotherapy agent) is evidently replacing R-CHOP, the cocktail of Rituxan plus four chemotherapy agents I received, as the standard, first-line treatment. Bendamustine is more easily tolerated and doesn’t typically lead to alopecia (hair loss).
There’s also a change in the NCCN-recommended treatment for relapsed follicular lymphoma: Rituxan maintenance and chemotherapy followed by radioimmunotherapy.
If I were presenting as a newly-diagnosed NHL patient today, I don’t know if this new first protocol would apply to me; nor do I know, were my NHL to come back with a vengeance, if the second option would be what Dr. Lerner would order up. That’s because my initial diagnosis was not follicular, but diffuse-mixed-large-and-small-cell. The small-cell type I now have has many similarities to follicular lymphoma, but it isn’t exactly the same.
Still, it leads me to wonder if this news story is significant for any treatment I may one day need.
It’s interesting for me to hear that both Rituxan maintenance (that’s Rituxan administered not only along with chemotherapy, but also on its own, as a monthly maintenance infusion over a couple of years) and radioimmunotherapy (Bexxar or Zevalin) are moving up in the medical world. I've written about both of these in the past, as I've become aware of discussions about their possible usefulness. Now these treatments seem to have moved to the head of the pack - at least for follicular lymphoma.
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.
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.
Here’s an eye-opening statistic: “Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible.”
Kairol Rosenthal, an author who cites this statistic, is a cancer survivor who proudly tells of how she works the system:
“I approach the challenges of the system as if I’m on a personal vendetta. I crush the system like a superhero who has grown a hundred times my size. I sleep at night knowing I have done everything within my power to influence my outcomes. This is my definition of well-being.”
That’s beyond proactive.
Not everyone would put it so zealously, but she’s got a point about the importance of getting second opinions. We don’t survive cancer by just sitting back and waiting for medical professionals to do things for us. We’ve got to question, to research, to learn. We’ve got to insist that our doctors give us the time and information we need to make informed decisions. We’ve got to learn the art of negotiating with insurance companies. We’ve got to keep track of those test results and make sure they get forwarded to the proper specialists. We’ve got to become our own best advocate.
I’ve been fortunate, that way. I feel blessed to have the sorts of doctors who give me far more than the time of day, and aren’t put off by talk of second opinions. But that doesn’t mean I can slack off on my homework.
There is an alternative, of course. We could just sit home and watch that flat-screen TV.
A couple weeks ago, I had another of my periodic PET/CT scans, which are becoming as routine as that sort of thing can possibly be. When I called Dr. Lerner’s office for the test results a week later, the nurse called me back and said the PET scan had revealed some unexplained “uptake” on the left side of my thyroid gland, in the area of the small nodule detected last time around.
On that earlier occasion, Dr. Lerner had referred me to Dr. Jay Sher, an endocrinologist. After subsequent tests, Dr. Sher pronounced the nodule too small to be concerned about, and not large enough to biopsy. He did say it bore watching, though.
Well, it’s no longer so small. On Wednesday I had a follow-up CT scan and ultrasound. Yesterday, I got a call from Dr. Lerner, who informed me it’s doubled in size, from about .80 cm to about 1.60. A centimeter and a half still sounds pretty insignificant to me, but I suppose in the world of endocrinology that calls for a closer look.
So, that’s what we’re going to do. As soon as I hung up after Dr. Lerner’s call, I phoned over to Dr. Sher’s office – it was just before closing time – and left a message. Dr. Lerner’s staff is faxing the scan results over. Someone from Dr. Sher’s office wil call back on Monday, presumably with a referral for an ultrasound-guided needle biopsy.
Dr. Lerner assured me there’s nothing to worry about just yet – most thyroid nodules are benign – but, still, it’s not something to leave unexamined.
Doing a little online research, I came upon a retrospective research study that calculated a malignancy rate of 28.8% in small thyroid nodules discovered in this way. I even learned there’s a name for this phenomenon. Abnormalities that show up on scans ordered for some other purpose are called incidentalomas. As high-tech scans proliferate, more and more of these tiny, mostly benign tumors show up – tumors that would, in an earlier era of medicine, have gone unnoticed.
That’s both a good thing and a bad thing. To the extent that incidentalomas turn out to be something truly serious, early detection is a fortunate – sometimes even lifesaving – coincidence. Yet, most of the time they’re just benign growths. Still, they trigger anxiety in patients who would otherwise go through life blissfully unaware of their existence.
I’m not feeling especially anxious about it, myself. I’m more annoyed, I suppose, that I have to go through this whole biopsy thing again. Having stumbled over the rock, though, we’ve got no choice but to turn it over and see what may be crawling around underneath it.
When we're first diagnosed, that's the question many of us may find rising to the front of our minds - whether or not we ever voice it. We look to our doctors to be healers, to cure our illness, to make us better.
Few of us travel very far down Cancer Road before coming to realize there's a lot more to it than that. There's so much to learn about the disease and its treatments.
I can remember the hours I spent reading Elizabeth Adler's Living With Lymphoma: A Patient's Guide (still the most informative book I've found about the biochemistry of this disease). Suddenly I found myself reading, with great interest, all about the chemical components of human lymphatic fluid - a topic I never dreamed I'd have the least interest in. Having cancer changes that in a hurry!
"So why not just tell the doctor to fix it? The short answer is that medicine has come much too far and become much too specialized for us to simply be passive participants. In many cases, there are treatment choices, and we can only make sound decisions if we understand them. And aside from cancer's physical impact, there are emotional, practical and day-to-day challenges that we need to face and address....
In fact, if there is one thing I've learned from all the survivors I've talked with over the years - survivors of many types of cancer - it's that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they'd be 'lucky' to be alive in a few years. Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions."
So, don't be shy. March into your doctor's office with a notebook in your hand, and demand all the time you need to get your questions answered. Bring a friend or family member if that will help you remember what's said. Four ears are better than two.
Don't be overly considerate of your doctor's ego. It's no insult to say you want a second opinion. Good oncologists are used to this. Those who bristle at the suggestion are the ones you need to watch out for.
Don't be passive. Let your doctor know you want to be a full participant in treatment decisions. Ask for full explanations of why one treatment may be better than another, and ask for time to consider the various options, if that's appropriate. Go to the library or onto reputable websites (like www.cancer.gov) to get the full story (or as much of it as your non-medical mind may be able to comprehend). There are lots and lots of good resources out there that seek to explain cancer so ordinary folks like us can understand it.
Jesus tells an odd little tale in Luke 18:1-8 that's often called the Parable of the Importunate Widow. That's an old-fashioned way of saying, "the Parable of the Pushy Broad." In the story, a poor widow is seeking justice from an unjust judge. He's a jaded bureaucrat who can't be bothered with shuffling case files from his inbox to his outbox any quicker than he absolutely has to. This widow, though, makes a pest of herself. She just keeps knocking on his door until he's obliged to rule on her case. Jesus ends by saying something to this effect: "If even a pushy broad like that can get some action out of a corrupt judge, won't our God of mercy pay even more attention to your prayers?" It's a word to the wise.
So, speak up for yourself. If you don't do it, who will?
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."
A few minutes ago, I happened to catch a few minutes of news coverage from the U.S. House of Representatives. Members of Congress were taking turns reading from the U.S. Constitution. This was the first time in history, the newscasters informed us, that the entire Constitution has been read aloud on the floor of Congress.
It took me back to my old Sunday School days. Our teacher used to ask us kids to take turns reading through a passage of scripture aloud, with each person reading a single verse.
Have we come to this? I know remarks have been made about the Tea Party movement treating the U.S. Constitution as a fundamentalist might treat the King James Version of the Bible, but when I saw it in action just now, the effect was chilling. John Calvin called the human race "a perpetual factory of idols." It would seem we've found ourselves a new one.
The U.S. Constitution is a remarkable historical achievement, and a model for democracies the world over. It is worthy of our respect and honor. But, to treat it as holy writ? I think there's a reason why this is the first time in history this stunt has ever been pulled: because previous generations - including the framers of the Constitution themselves - had better sense. I can imagine Ben Franklin rolling over in his grave right about now.
One commentator has estimated the cost to taxpayers of this little publicity stunt at $1.1 million.
Let's see, now... what does this story remind me of? Could it be when, in Nehemiah 8, Ezra the scribe reads the law to the people of Israel, freshly returned from exile to a ruined Jerusalem? Isn't it just a wee bit of hyperbole to imply that a mid-term change of party leadership in one of the two houses of Congress is a parallel situation of nationwide repentance from apostasy?
"And Nehemiah, who was the governor, and Ezra the priest and scribe, and the Levites who taught the people said to all the people, 'This day is holy to the Lord your God; do not mourn or weep.' For all the people wept when they heard the words of the law."(Nehemiah 8:8)
Oh, pull-eaze!
What really concerned me, though, was to hear the new Speaker of the House, John Boehner, lambasting the recently-enacted healthcare reform legislation and vowing to repeal it. I don't recall him ever mentioning the words "healthcare reform" without prefixing it with "job-killing." I lost track of the number of times he said "job-killing healthcare reform."
Is that all they've got? Just take their talking-point and repeat it again and again, ad nauseam? I don't recall potential loss of jobs being a major debating point when the legislation was first passed. Why didn't the opposition make a point of it the first time? Even if a significant number of jobs were to be lost because of this legislation - seriously doubtful, but let's grant the point for a moment - is preserving a modest number of jobs worth it, if most of working America continues to be just one medical crisis away from destitution?
Come to think about it, in making the job-loss argument, isn't Mr. Boehner conceding that the healthcare-reform legislation is, in fact, creating a system that's more cost-efficient than the one we've presently got? Wouldn't the elimination of a limited number of administrative-support jobs be, sadly, necessary, in order to accomplish the financial efficiencies that everyone agrees must be the goal if healthcare is to become affordable again?
Yes, he did. On the House floor. (He later apologized for it, explaining that it wasn't technically against House rules, then led a campaign to reform the House rules to prohibit what he'd just done. To protect the country from people like himself, I suppose.)
Mr. Boehner went on to repeat another phrase endlessly: "the best healthcare system in the world" - as in "they are trying to take down the best healthcare system in the world."
Mr. Boehner can be admired, perhaps, for his patriotism, but it's blind patriotism when it ignores the facts. The last time the World Health Organization published a healthcare-ratings table of the nations of the world, in 2000, the United States ranked 37th. France was number 1 - something even the conservative magazine Business Week admitted, in 2007, is a pretty impressive achievement.
In claiming the U.S. healthcare SYSTEM is the world's best, our new Speaker of the House is at best mistaken, and at worst engaging in a baldfaced lie. Yes, the healthcare available to certain people in the United States, and to certain well-heeled foreign nationals who fly here for treatment, is among the world's best. Yes, our nation is at the forefront of medical research. But our healthcare system - the overall structure whereby healthcare is delivered to the citizenry at large - is costly, inefficient and just plain broken for huge numbers of sick people. Worst of all, the sicker you get, the more you pay.
(That, by the way, is one thing the author of the Business Week article cited above admires about the French system. In France, the sicker you get, the less you pay.)
I don't seriously think this move to repeal last fall's landmark healthcare bill will succeed. There are still enough votes in the Senate to protect it. Contrary to the anti-healthcare talking-points, a huge majority of the American people still favor it. This is mere political posturing, just as reading the Constitution aloud on the floor of the House is political posturing.
Yet, those of us who are concerned for the health of all Americans - not just the holders of Cadillac medical-insurance policies like members of Congress - ought not to be complacent. This move is a major threat to the health, happiness and survival of millions of hardworking people. It seeks to perpetuate a corrupt system whereby big-business interests siphon off billions of dollars in profits, while poor and middle-income people die unnecessary deaths.
Remember, this is the man who once handed out checks from tobacco lobbyists on the House floor. That shows whose side he's really on.
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).
A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.
This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).
What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.
The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).
I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.
Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.
Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.
Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.
Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.
Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.
There's lots of talk, this time of year, about gifts and gift-giving, but here's a gift-giving story that will warm your heart. It comes from the sports pages, of all places.
Matt Hoffman is a defensive end for the Rowan University football team, here in New Jersey. Recently he was one of three runners-up for the Gagliardi Trophy, which is given to the most outstanding football player in Division III of the NCAA. It's that Division's equivalent of the Heisman Trophy.
Matt had put himself on the National Bone Marrow Registry's list of potential stem-cell donors some time back. Last November, his number came up. Matt's blood chemistry, it seemed, was a good match for a non-Hodgkin lymphoma patient, a stranger to him, who urgently needed to undergo the transplant procedure.
The only problem was, for Matt to say yes to the request to donate meant he would have to take some powerful medicines, whose side effects would prevent him from playing in the final football game of his Junior-Year season.
The voting for prestigious sports awards like the Gagliardi Trophy is heavily dependent upon statistics. For an outstanding player like Matt Hoffman to miss even a single game is a really big deal. It can mean the difference between being the trophy recipient and being the runner-up (as Matt turned out to be).
Matt didn't hesitate. He told his coach he couldn't play that day, because he had to go into the hospital to donate stem cells. For a stranger.
A few weeks ago - in the moments before the Gagliardi Trophy awards ceremony - Matt had the opportunity to meet the man who received his stem cells. The National Bone Marrow Registry puts a one-year moratorium on sharing the names of recipients, but after that year had elapsed - and with the consent of both parties - they brought the two men together. Matt had the opportunity to meet Warren Sallach, a 59-year-old road maintenance worker from Texas, who continues to be in full remission more than a year after receiving his stem cells.
It was an emotional occasion for both of them. Matt called it "one of the best moments of my life."
I'd be hard-pressed to think of a better gift-giving story than that. Matt Hoffman may be a runner-up for the Gagliardi Trophy, but he comes in first for an even more prestigious trophy, in my book.
Sometimes I wonder why I write this blog - why I started it in the first place; why I kept it up during some very difficult days, when I hardly felt up to it; why I keep doing it, more than 5 years after my diagnosis and more than 4 years into watch-and-wait so-called "treatment."
An answer has turned up in Britain's Guardian newspaper, as a psychologist speculates on why people write illness blogs. Here, a fellow cancer blogger, Sue Eckstein, quotes Dr. Tom Farsides:
"I'm just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: 'Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,' he says. 'But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.'"
Sad news, this evening, of the death of Elizabeth Edwards. Evidently, in the end it happened very quickly for her, which is a mercy.
The “late unpleasantness” of her husband’s irresponsible behavior has dominated the headlines in the past year or so, and many of us were very sorry to see that burden added to those Elizabeth was already carrying. It speaks to the strength of her character that, through faith and sheer determination, she somehow found the inner strength to be there for her family, to face the television cameras with her head held high and to continue to use her celebrity status to exercise compassion for others.
Her books, in which she candidly shared her life story, have been an inspiration.
Newsweek’s Jonathan Alter, himself a lymphoma survivor, shared a frank exchange he had with Elizabeth about her Christian faith, and the doubts she sometimes experienced, about both her cancer and the tragic, accidental death of her son, Wade:
“When I arrived, Elizabeth told me that cancer had essentially freed her to say whatever the hell she wanted. Then she proved it, by questioning the one thing all presidential candidates and their spouses must embrace - religious faith: ‘I’m not praying for God to save me from cancer. God will enlighten me when the time comes. And if I’ve done the right thing, I will be enlightened. And if I believe, I’ll be saved. And that’s all he promises me.’ But did she believe? Here she went further than any public figure this side of Christopher Hitchens.
‘I had to think about a God who would not save my son. Wade was – and I have lots of evidence; it's not just his mother saying it – a gentle and good boy. He reached out to people who were misfits and outcasts all the time. He could not stand for people to say nasty things about other people; he just didn’t want it. For a 16-year-old boy, he was really extraordinary in this regard. I wish I could take credit for it, but I can’t. You’d think that if God was going to protect somebody, he’d protect that boy. But not only did he not protect him, the wind blew him from the road. The hand of God blew him from the road. So I had to think, ‘What kind of God do I have that doesn’t intervene - in fact, may even participate - in the death of this good boy?”
That’s so like Elizabeth Edwards. She always told it like it is. Unlike so many people in public life who live elegantly fabricated lives, she was real.
Elizabeth will be well-remembered by those of us in the cancer community as a determined survivor, an encourager of others, an activist for change - and yes, a woman of faith. Let us offer prayers of thanksgiving for her life and witness.
Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.
So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.
Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.
My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.
Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.
In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.
So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.
Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.
There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.
Hope, she's come to realize, is “the only word that matters” in her business.
Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.
