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. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.
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.
Today’s New York Times tells of some research now under way that could lead to a simple blood test that could be used to diagnose cancer, particularly blood cancers like lymphoma (Gina Kolata, “Blood Test Shows Promise as Alternative to Cancer Biopsy,” New York Times, April 19, 2015)
From the article:
“The hope is that a simple blood draw — far less onerous for patients than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring the treatment in case the cancer develops resistance.... ‘This could change forever the way we follow up not only response to treatments but also the emergence of resistance, and down the line could even be used for really early diagnosis,’ said Dr. José Baselga, physician in chief and chief medical officer at Memorial Sloan Kettering Cancer Center.... A National Cancer Institute study published this month in The Lancet Oncology, involving 126 patients with the most common form of lymphoma, found the test predicted recurrences more than three months before they were noticeable on CT scans.”
The new test follows a novel approach: searching for tiny snippets of cancer DNA that the body sheds into the bloodstream. The DNA shards are tiny and short-lived (they last for only a few hours), but extremely sophisticated blood tests are evidently now able to pick out this particular needle-in-a-haystack.
Early signs are that the test may be more useful for follow-up with existing patients who are known to have had tumors than for first-time diagnoses. It doesn’t appear to be the sort of test that could successfully be given as a routine screening for healthy patients:
“Another possible application — early diagnosis of cancer — is trickier. If a blood test showed cancer DNA, what would that mean? Where is the tumor, and would it help to find and treat it early? Some cancers stop growing and even go away on their own. With others, the outcome is just as good if the cancer is found later.”
If this blood test is successfully developed for clinical use, it could greatly reduce the need for CT and PET scans in monitoring patients during and after treatment.
As I’ve said, this is huge (although, admittedly, still just a theory at this point). I’ll be watching for further news on this.
I read in the New York Times the other day about an “epidemic” of thyroid cancer in South Korea: a fifteen-fold increase in what had been, until recently, a relatively rare cancer. Thyroid cancer is now the leading cancer in that country. (H. Gilbert Welch, "An Epidemic of Thyroid Cancer?" New York Times, November 5, 2014.)
How to account for the increase? A team of researchers set out to discover the reason.
After gathering their data and running the numbers they came up with the culprit: increased diagnosis.
Yes, diagnosis. Beginning in 1999, the government health program started paying for cancer screenings. Many doctor’s offices are equipped with relatively inexpensive ultrasound machines, so they naturally ordered up the test. Drastically increase the number of screenings and you’ve got — you guessed it — a greater number of diagnoses.
It’s not that there was an increase in thyroid cancer. There was an increase in the ability to diagnose the cancers that were already there.
That may seem like a good thing, but it’s actually a bit more complicated than that. As the article goes on to explain:
“Where did all those new thyroid cancers come from? They were always there. As early as 1947 pathologists recognized that, although it was a very rare cause of death, thyroid cancer was a frequent finding during autopsies. Studies have since shown that over a third of adults have thyroid cancer. Virtually all of these cancers are small ‘papillary thyroid cancers,’ many of which will never become evident during a person’s life.
Unless that person receives a screening ultrasound. In fact, virtually all the newly identified thyroid cancers in Korea are papillary thyroid cancers. How do we know this is not a real epidemic of disease? Because the number of Koreans dying from thyroid cancer has not changed. If the screening were saving lives, the death rate would decline, or increase more slowly as the epidemic spread — but not stay perfectly flat.”
I was diagnosed with papillary thyroid cancer a few years ago and had my thyroid gland removed. I had no physical complaint at the time. I wouldn’t have known I had it, were it not for the regular CT scans I was having at the time (monitoring me for a recurrence of lymphoma).
I take a thyroid-hormone replacement pill (Synthroid) every day, and calcium supplements (Extra-Strength Tums) twice a day, because my blood tests following the surgery indicated calcium deficiency (a common side effect of thyroid surgery, due to damage to the nearby parathyroid glands). That’s no great inconvenience, but if I went a couple of weeks without my Synthroid, I’d be pushing up the daisies.
Was my surgery necessary? Would watch-and-wait have been more appropriate? There’s no way to tell for sure. Complicating the decision, of course, was the fact that I was already a cancer survivor at the time the thyroid tumors were found.
From time to time, I take advantage of educational conference-call opportunities that are made available by some of the leading cancer research and patient-support organizations. This afternoon, I listened to one that featured Dr. Owen O’Connor of Columbia University and Dr. Bruce Cheson of Georgetown University, both of them lymphoma specialists.
I’ve heard Dr. Cheson numerous times in the past (that's him to the left). Dr. O’Connor was a new name to me (see below for his photo).
Often, my chief take-away after listening to such programs is to feel reassured that I’m pretty much on top of the subject of recent advances in lymphoma treatments. That, in itself, is encouraging.
Today, though, I actually heard a few things I hadn’t heard before. Or, if I did hear them before, they didn’t register with me.
The first has to do with the vexed question of what sub-type of NHL I actually have. My initial diagnosis was for small B-cell lymphoma, which is usually understood to be an indolent form of the disease (as is the relatively common follicular lymphoma). My second-opinion from a pathologist at Memorial Sloan-Kettering in New York, however, identified a significant number of large cells (more dangerous, but also more susceptible to curative treatment), which set me out on the chemotherapy journey on which I embarked in early 2006. The new diagnosis at the time was “diffuse mixed large and small B-cell.”
As a result, when I attend lymphoma educational conferences where they ask participants with B-cell NHL to break out into workshop groups, some follicular and others large B-cell, I never quite know where to go.
Today I heard Dr. O’Connor speak of the fact that, when it comes to diagnosis, there is often a significant gray area between high-grade (somewhat more aggressive) follicular lymphoma and diffuse large B-cell. He also said there are well-documented examples of “histologic transformation of follicular lymphoma,” which means that a patient’s disease actually changes fro one form to another.
I’m not saying that happened to me, necessarily. It’s just that it highlights how the pathology reports that doctors often present to patients with such certainty are sometimes as much an art as a science. Dr. O’Connor pointed out that, in the case of some patients, if you were to present the same pathology report to ten different pathologists, as many as three or four of them may differ from the others with respect to grading of the disease.
That would put me squarely in the gray area, it would seem. It also means I’m likely always to have difficulty deciding which workshop group to join.
Generally, the news continues to be encouraging. Both doctors emphasized that, in the world of B-cell lymphoma, there are a great many treatments to choose from in the event of relapse. Here’s hoping I’ll never need them, but in case I do someday, it’s good to know there’s a choice.
They also made me feel like the R-CHOP treatment — harsh as it was — was, indeed, the most appropriate choice for me at the time. One of the callers in the question-and-answer session was wondering whether it’s best for a newly-diagnosed follicular lymphoma patient to start off with Rituxan only, rather than more traditional chemo agents. Dr. Cheson was quite clear that, the younger the patient is, the more important it is — all things being equal — to start with the harsher treatment first. Not only are the benefits likely to be longer-lasting with traditional chemo, but older patients are more likely to have difficulty tolerating it. So, it’s better to use it while you can, as a primary rather than a refractory treatment, while you’re relatively young.
I’ve often wondered, as well — especially as I speak to other patients whose disease is quiescent and who are pursuing long-term maintenance Rituxan treatments — whether watchful waiting continues to be the best course of action. Dr. Cheson put my mind at ease in that regard, by repeating news of some research studies I’ve already heard about. Specifically, these studies have found that, while maintenance Rituxan treatments may cause longer remissions, when everything is said and done, the overall survival rates of those who have had these monthly IV drips is no better than those who have not.
Anyway, it was a productive and reassuring hour to spend — even considering the ambiguity that goes along with living in the gray area. Thanks to the good folks at CancerCare for putting on such a useful program!
I found a great website today called the Lymphoma Club, which includes a helpful page containing tips for those newly diagnosed with lymphoma. This list is a bit long to absorb on one reading — 27 tips in all — but it’s well worth having a look at.
I’ve rearranged some of them into what I’d consider my Top 10. So, they’re renumbered, with the most important at the bottom. Where I thought a couple of the originals overlapped, I’ve combined them. I’ve added my own comments after each one.
10. Get organized. Consider a binder.
Or a series of computer files. Or whatever works for you. But you’ve got to have some kind of system for managing the tsunami of data you’re about to get hit with — some of it electronic, some of it paper (lab reports, prescription scripts, etc.), much of it stuff you’ve never heard of before. Start keeping an overall calendar of your treatment: you’ll be surprised how fast the weeks and months go by, and before you know it, you won’t be able to remember how many CT scans you’ve had, and when. Get in the habit of keeping a current medications list. You’re going to be asked for that information more times than you could possibly imagine (mine lives in my smartphone).
9. Find cancer support groups (ask your cancer center or search online).
For whatever reason — pride, idolatrous self-sufficiency, reluctance to deal with the weird reactions we ministers get from some people outside the church setting — I waited way too long to do this. The time to start going to a support group is BEFORE you think you need it. From the day of your diagnosis, you’re a cancer survivor. So, you can be sure there’s more than one group out there where you’ll be welcomed like you’re family, and (just like that old sitcom theme song) everybody knows your name.
8. List ways family and friends can help you (chores, rides, cleaning, etc.).
This is a biggie. If you hear that little voice inside your head, saying “But I don’t want to impose on others,” speak sternly back to it, saying “GET BEHIND ME, SATAN!” (That’s a biblical allusion, for those unfamiliar with it.) You’ve got cancer. You need help. There’s absolutely no glory in trying to go it alone. Get used to it.
7. Have a trusty advocate join you during appointments to take notes and help ask questions.
Remember that tsunami of information I mentioned above? This is one essential way of managing it. The necessity of bringing a friend or relative with you goes way beyond just sorting out a lot of medical jargon. You see, there’s a very common emotional reaction that’s especially strong at the time of diagnosis and just afterwards. You’ll be having a perfectly rational conversation with your doctor, and you’ll say to yourself, “No need to write that down, I’ll remember it,” then five minutes later as you’re walking out to the car, you’ll say, “Now did the doctor say my cancer is large-cell or small-cell, and which one is more treatable?” This has nothing to do with your intelligence, nor your memory power. It’s a species of denial. No matter how much you may imagine you’re cool, calm, collected and handling this pretty well, the reality is, you’ve just learned something that’s rocked your world, so your subconscious is saying, “That’s enough, I’m outta here!” You need that second set of ears, especially now.
6. Get educated. Know the details of your cancer diagnosis but don’t spent too much time online.
This is information-tsunami management, part two. To some extent, how you do this is an individual thing, but there are so many advantages to doing it — taking charge of the situation and becoming your own advocate — that this one makes my top-ten list, hands down. There’s a wealth of information out there, but the trick is separating the wheat from the chaff. Start with a good book on the details of your disease (I recommend Living With Lymphoma by Elizabeth M. Adler, a microbiologist and lymphoma survivor - Johns Hopkins, 2005). As for the internet, don’t be afraid to troll for useful information online — it’s not so much the amount of time you spend online, as where you go to find your information. Start with highly-reputable sites like the Leukemia and Lymphoma Society, or the National Cancer Institute, or the websites of world-renowned cancer hospitals. Then, move slowly outward from there (but always following links from these trusted sites). If you have any experience at all surfing the net, you already know it’s the Wild West out there when it comes to documentation and accuracy. It’s so very easy to wander down one of those electronic rabbit trails, and before you know it, you’re reading about how to cure lymphoma by wearing a crystal around your neck. Know, also, as you cancer-surf, that we all have a common defense mechanism that leads us always to jump to the worst-case scenario. All we need do, sometimes, is glance at a list of possible symptoms, and we’re quite sure we’ve got every one of ‘em. (The defense-mechanism angle is that our subconscious irrationally imagines we can protect ourselves from pain by inoculating ourselves with that same pain, even if there’s scant evidence for it; one of the reasons we have doctors is to protect us from such craziness). Oh, and the other, similar tip about learning to read a lab report is absolutely correct. Learn what the most important of those little abbreviations on your CBC (complete blood count) mean, so when one of them shows up as elevated, you don’t flip out. Sometimes an elevated count is a big deal, but more often than not, it’s just normal variation.
5. Feel free to seek a second opinion.
I agree with this as far as it goes, but I’d be much more emphatic. (Deploy megaphone.) GET A SECOND OPINION, STUPID! (Put away megaphone.) Sorry for the “stupid” moniker, but I had to get your attention. It doesn’t matter how much you like and trust the doctor you start with, cancer research is such a huge and complex universe that no single individual could ever be familiar with it all. If your oncologist is any good at all, he or she will have absolutely no problem with your seeking a second opinion, and will probably encourage it. On the other hand, if your oncologist bristles at the suggestion and starts bragging about his or her own medical credentials, then RUN, DON’T WALK to another doctor who better demonstrates the spiritual gift of humility. It’s exactly that sort of fall-in-love-with-yourself pride that leads doctors to overlook important details. Nowhere is this more crucial than in your all-important pathology report. And, do you know what? Your pathologist is by far your most important doctor you never meet. (The pathologist is the one who looks through the microscope at your biopsy slides and identifies your type of cancer cells, carefully counting how many of them there are, which determines the whole course of your treatment.) When you go from your local physician to an evaluation at a major cancer center (or, if you start with a major cancer center and go from one center to another) you get a new pathologist’s opinion along with it. You may well stick with your original doctor after getting the second opinion — or not, it’s up to you — but even if you stick with the original doc, he or she is going to be grateful that you presented the second opinion, which makes diagnosis and staging easier. (IF the doctor’s any good, that is — see “humility,” above.)
4. Pick an oncologist, one you feel comfortable with. Preferably an expert in your type of cancer.
You DO have a choice. It’s your cancer, so you have a right to find a doctor you have confidence in. Whether it’s your first stop or a second-opinion consultation (see above), I HIGHLY, HIGHLY recommend checking out a National Cancer Institute (NCI) comprehensive cancer center. These are the cancer research hospitals that have access to the most up-to-date research findings and are able to point you to clinical trials, if that’s called for. If it’s a long journey between your home and a comprehensive cancer center, then consider working through a local oncologist who has strong ties with one of those centers (that’s what I do). And by the way — this is also real important — the mark of a good cancer hospital is not, I repeat, NOT how much money said hospital spends on TV advertising. The most prolific advertisers among cancer-treatment hospitals are certain for-profit institutions who garner impressive treatment results by cherry-picking the most treatable patients on the front end, discouraging those whose prognosis is less positive. (You won’t find these big advertisers on the NCI’s list, and there’s a reason for that.) This is ethically questionable behavior on the part of those who most stand to profit financially from that sort of approach. As with anything else that's driven by the profit motive, caveat emptor.
3. Continue to celebrate life in spite of cancer. You still have your identity. Don’t lose it. Participate in hobbies, live life and do the things you love to help keep you focused.
We’ve already established that a cancer diagnosis rocks your world. But that doesn’t mean you need to stand idly by and let it take over your world. Don’t let yourself become a cancer victim. Be a cancer SURVIVOR. There’s a huge difference, that has a lot to do with the degree to which you spit in cancer’s face and go on living your life, anyway.
2. Find ways to relax and cope (yoga, guided imagery, music, hobbies, faith etc.).
OK, I’ve elevated this to number 2, even though I have a major quibble with how it’s worded. Faith is not, I repeat, NOT in the same league as music, hobbies and the other items on that little list. There’s a common tendency in our non-sectarian society to label faith a “leisure activity” and lump it in with all sorts of more trivial pursuits. A cancer diagnosis doesn’t just rock your world, it rocks your spiritual world. Whatever sort of faith you profess, this is the time when you most need to get serious about your faith-tradition and tap its resources. The benefit of doing that goes way beyond merely “relaxing and coping.” Your house of worship, if you have one — church, synagogue, meeting-house, temple, whatever — is the place to wrestle with the big questions, with help and advice from wise guides who have the life-experience and faith-experience to help you sort these issues out. (If you don’t have a house of worship, I advise you to find one.) Remember, houses of worship were in the healing business long before hospitals even existed. Nowadays, they perform their acts of healing alongside of, and in sync with, medical science, which means you get the best of both worlds. Your house of worship is also a great place to connect with friends who can, indeed, “help you” (see number 8, above).
And now, ladies and gentlemen, the number one tip for dealing with a new lymphoma diagnosis...
1. Take a deep breath and go easy on yourself.
Know that right now, today, is just about the worst time in the whole progression of your disease, whatever the ultimate outcome. Diagnosis is hard. (I’m not talking about it from the doctor’s standpoint, but from yours.) It’s hard because, in running the race for a deeper, more all-encompassing health, now is the time when you have to go from zero to a hundred in a matter of feet, not miles. So, treat yourself right, especially at this time. In the eyes of your Creator — not to mention those of your family and friends, and even yourself — you’re worth it. You really are.
Go ahead, now, if you’d like, and check out the other items on the original list. Most of them are pretty good, and very much worthy of mention. But these are my Top Ten, and I’m sticking with ‘em.
Finally, take a look at this short video, which comes from the same Lymphoma Club website. It’s guaranteed to lift your spirits and give you hope.
We’ve been having quite an experience around here, living through Hurricane Sandy. We live six blocks from the Atlantic Ocean in Point Pleasant Beach, New Jersey. We were never evacuated, and the storm surge never reached our house, but those to the east of us didn’t fare nearly so well. The area east of the NJ Transit railroad tracks (just two blocks from our house) was evacuated. Not much further along the road was the high-water mark. Not too much further than that, there was three or four feet of water inside the houses.
No one remembers a storm this bad. Not even Vince, a 94-year-old member of our church. I asked him, and he was very clear in confirming that this is the worst he’s ever seen.
We had no electricity for five nights. Some in our community still haven’t gotten it back.
Fortunately, I invested in a battery pack for the Bi-Pap machine I use to sleep at night (for my obstructive sleep apnea). I’d purchased a small generator after Hurricane Irene, and that was sufficient to charge the battery pack and our cell phones, as well as run a mini-refrigerator.
One aspect of the storm that didn’t occur to me until much later was how Dr. Lerner’s oncology practice fared. He and his colleagues run a chemo suite out of their office. No power means no IV drips, and with no IV drips (and no power to run the refrigerators where certain medicines are kept), there are no chemo treatments.
I knew something was up on my most recent follow-up visit, when I noticed the office staff still had their Halloween decorations up. Holiday decorations are a big deal at the Atlantic Oncology/Hematology office. I suppose it’s something the nurses and technicians do to try to boost patient morale.
I was in the office on November 9. That’s more than a week after Halloween. The fact that the staff left the decorations up for so long is a sure sign that they’d been preoccupied with much weightier matters.
I confirmed the same when I got in to see the doctor. I asked Dr. Lerner how they’d managed, and he confirmed that it was pretty chaotic. Some of the sicker patients under the group’s care they had admitted into the hospital. Others simply had to miss their chemo treatments for nearly a week — not a good situation, but with the power failures so widespread, there was nowhere else (except the hospital) where those patients could have been taken, in order to stay on their treatment schedule.
That’s something folks rarely think about when making the decision about where to receive their chemo treatments. Hospitals have emergency generators, but I’m not sure if the outpatient chemo suite rates that jolt of extra power.
Just a few days ago I attended an educational event sponsored by the Leukemia and Lymphoma Society. The organizers of this evening conference asked me to participate in a panel discussion on survivorship issues.
I was struck, as I sat down to dinner with my fellow cancer survivors, that no one was talking about Hurricane Sandy — even though it had been just about the only topic of discussion everywhere else. It seemed ironic to view a discussion about cancer to be less anxiety-ridden than one about cancer.
There’s an instant communion when two cancer survivors come together. Once we share our diagnoses and staging with one another, and possibly a little bit of the story of how we were diagnosed we just know we’re simpatico.
The hurricane wasn’t far from my mind, though, as I briefly shared the story of my experiences. I told my fellow survivors and their families that the experience of diagnosis is not unlike that of living through a hurricane.
It actually takes quite a while for most people to be diagnosed for certain. In my case, it was about two months since my first suspicious-looking ultrasound and the sit-down in Dr. Lerner’s office, when he informed Claire and me that I have cancer. In between, there were various scans, then minor surgery to obtain the biopsy samples, then a week or so while we waited for the pathologist to analyze the results.
In the case of a hurricane, there’s also a whole lot of waiting beforehand. Everyone knows the storm is coming, but most of us take our time about preparing for that eventuality. Denial is often a factor.
As the hurricane barrels along the coast, getting closer by the hour, everyone nervously awaits each test result, each piece of information, that can she some light on the situation.
That is, until all the lights go out. The darkness can seem interminable under those conditions. In the darkness there is chaos and confusion and a group of people rapidly scrambling to get back in touch with the only reality they’ve ever known. Yet, that reality never returns. Because the new normal is the order of the day.
As we lived through those days without electrical power, that was our new normal. We adapted. We did what had to be done. We survived.
A cancer diagnosis is a perfect storm. I’m living testimony that there is plenty of life on the other side of that life-changing experience
A remarkable television moment this morning, as ABC Good Morning America broadcaster Robin Roberts delivers an emotional announcement that she has myelodysplastic syndrome (MDS), and is starting treatment that will ultimately result in a bone-marrow transplant.
This isn’t the first time Robin has been in the news with a very personal medical story. Five years ago, she received successful treatment for breast cancer, and spoke about it on the air. Today, she sat on a couch with other members of the Good Morning America team gathered around her for support, and told her viewing public of her diagnosis. A helpful stagehand had attached a box of Kleenex to the couch with velcro. She didn't need it.
It’s really worth watching the video clip of Robin’s Good Morning America announcement. It’s a fascinating mini-case-study of what it means to live with cancer, in community with others. The reactions of her colleagues sitting on either side of her are just as illuminating to watch as she herself is.
Although Robin didn’t use the “C” word on the air, MDS is considered to be a blood cancer in the same family as leukemia and lymphoma. Treatments are similar. Robin has the good fortune to have a sister who’s a perfect donor match (which tells me she’s going to have an allogeneic stem cell transplant, generally considered to be the most effective). Good for her.
At such future time as I may have to have a stem cell transplant, a donor’s not going to be so easy to find. Both my brothers have been tested, and we’ve learned that neither one of them fits into the 25% of siblings who are typically a good match, so I’d have to rely on finding a volunteer through the National Bone Marrow Donor Registry.
Robin is planning to continue working, even though a PIC line may be visible on her arm (not a big deal for most people, but in the image-conscious world of TV journalism, it’s significant). She will, of course, eventually be out on sick leave for an extended period of time, as she goes into isolation for the actual transplant. Yet, in the months leading up to that time, as she receives various drugs to prepare her for the big event, she’s going to keep going before the cameras, living life as usual.
While this may sound extraordinarily courageous to some viewers – and, indeed, to some of Robin’s colleagues sharing the couch with her – to anyone who’s been in that situation it’s not so surprising. What most of us want to do, once we’ve gotten over the initial shock of our diagnosis, is to keep on living our lives. This is the second time around for Robin, when it comes to cancer treatment. While she’s obviously emotional going before the cameras to tell her story, it makes sense to me that she wants to keep on keeping on, with a minimum of fuss. In Robin’s own words, “It’s about focusing on the fight, and not the fright.”
If her viewers catch sight of a bandage on her arm, indicating the presence of her PIC line, then it will be a helpful reminder that there are far more people living with cancer than dying from it.
I’m writing this in Indianapolis. I’m here for a few days for the Presbyterian Church’s “Big Tent Conference,” a national training event.
In the rush to get packed and to the airport, I didn’t have time to report on my Wednesday afternoon follow-up consultation with Dr. Boyle, so I’m doing that now.
The news continues to be quite good. The doctor examined my surgery scar and says it’s healing well. The hardness of the tissue around the scar is normal, says he, and will diminish in time. He says I’ll probably always feel a certain tightness as I move my head up and down, or side-to-side, as do most patients who’ve had this surgery.
Dr. Boyle gave me a copy of the post-surgery biopsy report. It confirms the presence of cancer cells in both lobes of the thyroid, so total surgical removal was definitely the way to go. The report also identifies some cancer cells that were found in the fatty tissue that surrounds the thyroid, which isn’t all that unusual.
As for the pathology itself, my needle-biopsy diagnosis of papillary thyroid cancer was reaffirmed, with the further refinement that I have the “tall cell” variety of papillary cells. This is a somewhat more aggressive form of the papillary cancer.
Because of (1) the tall-cell diagnosis, (2) the concern about the cancer cells just outside the thyroid, (3) my age and (4) my male gender, Dr. Boyle is definitely recommending that I receive a single radioactive iodine treatment within the next 6 months. That treatment used to be nearly universally used as a follow-up for thyroidectomies, but now it’s thought that this procedure was over-prescribed in the past. Only certain patients now receive it, and those factors mentioned above make it essential in my case. Dr. Boyle says there’s no doubt about the advisability of going ahead with that, and who am I to disagree?
So, how concerned should I be about the tall-cell diagnosis? One paper I found online cites a study that found that the 5-year survival rate for tall-cell papillary thyroid cancer patients was 81.9%, as compared to 91.3% for ordinary papillary thyroid cancer patients. Those are still mighty good odds.
On Dr. Boyle’s recommendation, before leaving the Basking Ridge, New Jersey facility of MSKCC, I made an appointment to see Dr. Stephanie Fish, an MSKCC endocrinologist, on Friday, August 5. She’ll be the one who will oversee my radioactive iodine treatment.
As I understand it, that treatment involves some dietary restrictions before and after. As for the treatment itself, I’ll simply have to swallow a pill, which includes the radioactive substance that will make a beeline for any residual thyroid cells that may remain in my body, and zap ‘em. There are no side effects to speak of, although I’ll have to stay away from other people for a few days following the treatment, because of the radioactivity that will persist in my body.
Bottom line? There’s every reason to be confident that the combination of my total thyroidectomy with the radioactive iodine treatment that’s ahead of me will lead to a complete cure. The tall-cell variant is a concern, because it leads to a measurably higher risk, but the overall picture is still quite encouraging.
I still don’t know what malady I came down with, that led to the postponement of my thyroid surgery. One thing I did discover, though: if you’re going to get sick, don’t do it on a holiday weekend.
I started feeling headachey Wednesday, the surgery was postponed on Friday, but it wasn’t until Tuesday that I was finally able to see Dr. Cheli, our family doctor, to begin trying to figure out what ailment I had. He ordered blood work, so it wasn’t until Thursday (yesterday) that enough test results had come back to allow the good doctor to conclude.... Wait for it now.... “We have no idea.”
He called me again today, and left a voicemail. Some more detailed test results had come back. The verdict.... “We still have no idea.”
He’d warned me it could be that way. Seems there are a lot of viruses that slink in and out before medical science can figure out what they are. Guess I had one of those shy ones.
That doesn’t mean it didn’t pack a punch. It was only this morning that I finally began feeling like myself again.
The thyroidectomy is rescheduled for Friday, June 17. Now I’m playing catch-up, because for most of the past week I didn’t have energy for doing very much (and even if I had, I wouldn’t have wanted to put anyone else at risk of getting that pesky bug).
Somebody said the best way to make God laugh is to tell God your plans. I think I can still hear the Almighty snickering.
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.
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."
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).
This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.
I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).
Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.
Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.
Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.
The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.
Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.
He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)
So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.
“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”
Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.
The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.
What, Showtime was too stingy to spring for a decent medical advisor?
Washington Post reviewer Hank Stuever makes a similar point:
“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”
While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.
Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.
When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.
Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.
I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.
I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.
Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.
Friday I had a long-scheduled appointment with Dr. Lerner, following my most recent CT and PET scans. I didn’t feel at all anxious going into this appointment. One of the nurses had phoned me the day after the scan with a message from the doctor, saying there was no significant change. I’m still out of remission, but the cancer hasn’t grown perceptibly since it first reappeared. It’s the sort of ambiguous news I’m used to getting from this decidedly indolent cancer.
The news could have been better – “no cancer” – but that’s highly unlikely, from what I’ve been told about this form of NHL. It could also, of course, have been worse – “the cancer has grown.”
I’m at neither extreme. I’m living with ambiguity, learning to take comfort where I can amidst the uncertainty of watch-and-wait.
There was one peculiarity the nurse had mentioned. “Did you have a fall?” she asked.
“No, what makes you think that?”
“Well,” she replied, "the PET scan shows some hot spots near your right ribs. That’s consistent with a recent injury, or it could be just an inaccuracy in the test.”
Dr. Lerner explained, when I saw him, that the PET scan shows three spots on my ribs. If I don’t recall getting a jolt in the ribs, he said, it’s probably nothing significant – a false positive. This is because the more accurate CT scan shows nothing out of the ordinary. That’s the one we trust for a detailed diagnosis.
As for the thyroid nodule, the follow-up ultrasound revealed the nodule had grown no bigger. If that proved to be the case, my endocrinologist Dr. Sher had told me some months ago, it probably means the nodule is benign (as he suspected anyway, from observing it).
That’s the problem with all this high-tech medicine. These machines are so powerful, they sometimes reveal non-problems we never knew we had.
I did learn something new from Dr. Lerner this time around: a fine point about the grading of my disease. I’ve been telling people – and writing in this blog – that, after chemo, my grading changed from “diffuse mixed large and small cell” to “follicular lymphoma.” When I described my cancer as follicular lymphoma, Dr. Lerner corrected me. Scanning the pathology report from my most recent biopsy, he told me I don’t have that grade. What I have is “diffuse small cleaved cell” lymphoma.
They're similar. Both are B-cell. Both are indolent types. Yet, when my cells are slathered onto the microscope slide, they don’t display the follicles that give follicular lymphoma its name. (Here's a sample of diffuse small cleaved cell lymphoma I found on the Internet...)
Not being schooled in the ways of these tiny cells, I can’t imagine how that difference is important. Surely it will have some influence on my treatment plan, when the time for further treatment finally comes. The details are understood only by people who peer through microscopes.
“We have investigated the cellular origin and/or pathogenesis of follicular small cleaved cell lymphoma (FSCCL), diffuse small cleaved cell lymphoma (DSCCL) and intermediate lymphocytic lymphoma/lymphocytic lymphoma of intermediate differentiation (ILL/IDL) based on a series of immunologic and molecular genetic (bcl-1, bcl-2 and bcl-3 genes) studies. These studies have led to the conclusion that the cellular origin or pathogenesis of ILL/IDL and DSCCL is distinctly different from that of FSCCL: (1) FSCCL is a neoplastic counterpart of follicular center cells (FCC) of secondary follicles because of the presence of CD10 and bcl-2 gene rearrangement and the absence of CD5 and bcl-1 gene rearrangement; (2) DSCCL and ILL/IDL are a neoplastic counterpart of mantle zone (MZ) B lymphocytes because of the presence of CD5 and bcl-1 gene rearrangement and absence of CD10 and bcl-2 gene rearrangement; and (3) FSCCL scarcely develops into DSCCL, and the previously proposed concept that DSCCL represents a diffuse counterpart of FSCCL does not hold good.“
Well, that’s clear as mud, isn’t it?
I’m just glad my DSCCL is indolent, like the FSCCL I formerly thought I had. Keep your siesta going, cancer cells. I can wait.
The other day I was catching up on my reading, scrolling through the entries on some cancer blogs. On the blog of Mike Dellosso, a published novelist, I came across a short story he wrote, called “The Last Chapter.” (After clicking on the above link, scroll down to the very bottom of Mike's page for the link to his story.) He wrote it, he says, right after his own cancer diagnosis, as a sort of coping exercise.
I find it interesting to read, from the perspective of a cancer survivor. The story’s about a newly-diagnosed man, a construction worker, who learns from his doctor that his cancer is advanced and untreatable. He resolves to end his own life, then some experiences he has lead him to question that decision.
Here’s something Mike writes in another blog entry, dated December 30:
“I learned this: God is good all the time. ‘But how is getting cancer good?’ I have no idea. But I know this. God’s standard of goodness is not the same as ours. His understanding of goodness is on a different plane than ours. He sees things our eyes could never see. Knows things our minds could never even dream of fathoming. His idea of suffering is not the same as ours. He is God and I am not. And in that I have to place my trust.
I also learned this: God will never . . . ever . . . abandon me.”
Like the protagonist in Mike’s story, the news of a cancer diagnosis can shake our lives to their foundations. Most of us – like Mike, and like the man in his story – enter into this crisis and come out the other side, eventually, feeling stronger for the experience.
It’s one of the wonders of this experience called cancer.
“We know that all things work together for good for those who love God, who are called according to his purpose.” – Romans 8:28
Generally speaking, it’s not a good thing to miss an anniversary. Spouses and significant others tend not to be amused by such lapses of decorum.
When it comes to the anniversary of one’s cancer diagnosis, though – one’s cancerversary, some call it – it’s different. A cancerversary can actually be a good thing to forget.
I missed mine this year. Even though the date sits right up there at the top of this blog, bold as brass, I missed it. This December 2 marked three years since that day Claire and I sat in Dr. Lerner’s office and heard him deliver the news.
What does it mean that I forgot my cancerversary? It means I continue to feel fine, even though tests and scans keep flagging enlarged lymph nodes here and there. It means I’ve been so busy, I haven’t been thinking about cancer as much as I used to. It means, in simple calendar terms, I’ve simply put more distance between that day and today.
I can’t relax completely, of course. I can’t put it behind me. I’m not in remission, after all.
That’s the paradox of this indolent variety of the illness. Except for that flickering scan image on some radiologist’s monitor, you feel fine. Life goes on. Yet, all the while, silently and sneakily, the malignancy continues to lurk, and sometimes even to grow. It’s the tiny, hard pea under the stack of mattresses.
Still and all, it’s probably a good thing that December 2 passed me by, without black crepe and dirges. It shows I’m slowly learning how to live with this thing.
