“Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so”—John Donne
On a Sunday in January, 2014, I opened the New York Times Opinion section and stumbled upon one of the most unusual essays I had ever read. It was written by Dr. Paul Kalanithi, who at the time was a 36 year old neurosurgery resident at Stanford who had been battling metastatic lung cancer for eight months. Here is a link to the essay, entitled “How Long Have I Got Left?”– http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=0 The author’s point was one well understood by cancer patients everywhere—if the doctors could not tell him whether he had a month, or a year, or ten years, how could he possibly determine what his priorities should be and how best to live his life? Should he finish his residency? Should he write a book? Should he have a child? In his worst moments he wrote that he fell back on his first love—literature. In the last sentence of Samuel Beckett’s The Unnamable, Kalanithi found a mantra to live by: “I can’t go on. I’ll go on.”
As it turned out, he did not have long. Despite the optimistic and sometimes humorous tone of the essay, Dr. Paul Kalanithi died of his lung cancer 14 months later. But not without first doing ALL of the things he mentioned in the essay. He finished his neurosurgery residency as chief resident. He repaired a fractured marriage. He had a child. And to our great benefit, he wrote a book called “When Breath Becomes Air” published posthumously in January of this year—a book which despite my oft stated incredible reluctance to read anything I know will make me cry, I grabbed off the shelf the minute I spotted it in a local bookstore. I was not disappointed, and yes, I cried.
The courage of cancer patients, and of all patients facing life threatening disease astounds and inspires me. Many go through grueling and exhausting treatments and manage to put one foot in front of the other—they “can’t go on…they go on.” Paul Kalanithi not only went on…he wrote about his experience in a book that will stand not only as a cancer memoir, but as a profound piece of writing. When faced with dying, he chose life by completing his training, by having a child, by believing every day that he still had much to offer. In an essay for Stanford Medicine he wrote words for his infant daughter which were included in his book: “When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.”
I hope you get a chance to read his book. Even if it makes you cry.
A patient story tonight, from Jackie:
It was one of those days. I had been to the gynecologist the week prior because I somehow knew the sporadic bleeding which I had experienced was NOT a simple Urinary Tract Infection for which I had been treated three times. My doctor did the scrapings and biopsies and had me run down the hall for an ultrasound. I’d had lots of ultrasounds during my pregnancies – especially with my twins - but this one wasn’t fun. There was no cute baby to smile at. This time it was a transvaginal ultrasound which involved the insertion of a rather large tube into “that place” to look at the uterus. “My what a big wand you have” I joked with the sonographer. She didn’t smile. That’s when I got a bit nervous.
Of course my doctor put a positive spin on everything – prior to the biopsy results. He said it was probably just an over thickening of the uterus, Hyperplasia. So I decided to wait until there was something solid to review and went on about my life. I had a dental appointment a few days later. My dentist announced I needed a root canal immediately and sent me to a nearby Oral Surgeon. As I was pulling up to the Oral Surgeon’s office my cell phone rang. It was my gynecologist. “Well, there is a malignancy….”. The words hung in the air. We had a brief conversation – darn, I thought – I had researched Hyperplasia thoroughly and knew all the right questions to ask. I felt like I had studied for a test and then the test changed. He said I needed to contact a special Gynecological Oncology surgeon and that his office would tell me what’s next. So I called and left a message with that doctor but said I couldn’t talk for a couple of hours because I was just about to go in to have a root canal. One thing I will say about those specialists’ offices; they run like a well oiled machine. As I walked back to my car 2 hours later there was a message on my cell phone. It was Jay, the Office Manager for the Gynecological surgeon I needed to see. He was calling to schedule my appointment. He paused and said “Good luck with the root canal. Sounds like you are having a great day”. And so it went.
My life was forever changed. May brought the diagnosis. June brought the scheduling of the hysterectomy. July 1 was the surgery. July 10 came the pathology report. Not what we had hoped for– the “once and done” hysterectomy revealed some naughty cells lurking within the uterus that have a tendency to “jump” into other areas. Chemo or Radiation? My case was submitted to the Austin Gynecological Oncology Tumor Board for review as recommended by my Surgeon. I was overwhelmed. I didn’t know what I didn’t know. As is often the case when you do get the “C” diagnosis; you are thrown into a blender of emotions but when the dust settles the appetite for knowledge takes over. And so it was decided that radiation was the protocol. After I healed from surgery, radiation began.
So here’s the thing: it wasn’t that horrible. For anyone who has been through tough times, worked hard and experienced inconvenience or sadness – you are mentally strong and prepared for this challenge. It is definitely a Mind Game. I decided to fight and endure and not to whine and whimper. For 6 weeks my life revolved around daily visits to the Oncology Center. The treatment wasn’t bad. The hardest part was drinking 40 ounces of water prior to treatment. The side effects clicked in about 3 weeks in; lower GI issues. But oh well, diarrhea is not the end of the world. My pubic hair fell out which I found fascinating. I met wonderful friends in the waiting room. The therapists and nurses and doctors were wonderful. My neighbors and family rallied and emotions ran high. Food and flowers poured in. My sweet neighbor who had just finished two years of breast cancer diagnosis, surgery, chemo, radiation, reconstruction – I was at her door daily for her battle. Now, she was at mine. Life sifts down to the basics of priorities: Faith and Family and Friends.
I finished my radiation on September 15 and got to Ring the Bell which is special to all cancer patients because it means YOU ARE DONE. My sweet family and a few friends showed up. Tears flowed. My husband pushed through the group to shake the hand of my Radiation Oncologist and choked “Thank you for helping my wife”. I was ready to start my new healthy life.
Check-ups will continue for a few years and I will see both my Surgeon and Radiation Oncologist often. That’s okay. My Surgeon is cute (I think he is almost the same age as my oldest son) and my Radiation Oncologist is an incredible mother of four who never seems hurried or distracted and makes me feel like I am THE most important patient in her practice. I feel so blessed to have been in such capable hands.
I feel wonderful. Celebrating my December birthday was more special this year. Welcoming the New Year signaled almost a palpable relief to make a fresh start. I take nothing for granted and try hard to live in the moment. Ever the planner, this has been my most challenging goal.
For Christmas this year my daughter gave me a beautiful silver charm. On the front it says “Faith”. She told me to turn it over. On the back was engraved 9-15-2014. My final day of radiation. It has been the most horrible of years, but it has been the most wonderful of years. When Cancer comes to call you rise up and fight the good fight. And then, you go on.
“to live in this world
you must be able
to do three things
to love what is mortal;
to hold it
As a parent, you are not supposed to have a favorite child, and since some of us physicians feel a strange but kindred protectiveness for our patients, likewise we feel guilty about having favorites. But we always do. My favorite patient died last night. On my last day of work, I gave her my email address and my cell phone number, so we could keep in touch. She gave me a bright red stuffed teddy bear, so that I would always remember my “wild red headed woman from Texas.” Except that she had no hair–she had grown and lost it so many times over the six years I treated her that even I lost count. When I retired, I made sure that she had a follow up with one of my colleagues, who I trusted would give her his best opinion and effort in managing her care. When he saw her in March, he told her there was nothing more he could do. She signed on to hospice the following week.
She was diagnosed with a rare form of cancer of the uterus nine and a half years ago. By the time I met her, in 2008, she had already developed lung metastases and had undergone several courses of chemotherapy, none of which had kept the metastases in check for very long. After a trial of radiofrequency ablation which resulted in a pneumothorax and chest tube, she was referred to me for consideration of stereotactic radiosurgery. We treated her lung lesions one by one, and one by one they faded into scar tissue. She was happy and relatively without symptoms until eighteen months ago, when she began to recur in the lung, and brain, and soft tissues of her muscles. She remained upbeat, larger than life, encouraging the radiation therapists to treat each new lesion as it occurred. My entire staff looked forward to treating her every time she returned to the department. We joked about awarding her “frequent flyer miles” and she laughed and her blue eyes sparkled. Her chocolate chip cookies were legendary, and she gave us the recipe, but they never turned out the way they did when she baked them. We accused her of leaving out a secret ingredient and she protested vigorously. She said she would never do that.
She traveled a lot in the last year of her life—to visit her children, to see a new grandchild being born. Her last trip was to New Orleans with her husband, where she looked forward to eating beignets and listening to Dixieland jazz, even though her trip was interrupted by an emergency room visit for shortness of breath. When we parted at the end of February, we promised to keep in touch and get together for lunch or dinner but she had complications from her last course of therapy, or from the cancer itself, and when I heard from her by text and by email, the news was not good. In her last email, she told me she had joined a gym, determined to try to regain some of her strength. She promised to call when she was feeling better.
She did call me, last weekend, to see if I could have lunch with her and her husband on Thursday. I missed her call, but I knew I was busy that day, so I called her back to reschedule but she did not pick up the cell phone. And so I was not surprised when I received the news today that she had passed away last night. Not surprised, and yet astounded, that such a vital life force had left us. My entire staff is bereft.
In his email to me and I am sure, countless others who knew and cared about her, her husband included two photographs of her. In the first one, they are cutting their wedding cake—she in her beautiful white dress with her long flowing red hair and he, handsome in his tuxedo and moustache. Over thirty years must have passed between the first photo and the second, where she stands alone, healthy, beaming, and holding a yellow rose. After all, she was from Texas. As I looked at the pictures again this evening, it occurred to me that I knew that the ingredient she poured into those chocolate chip cookies but forgot to write down for the rest of us was love. Simply and purely, love.
A couple of weeks ago my nurse came to me with a request for a consultation. Since our schedule has been packed full lately, she’s been asking me where I can squeeze patients in. She said, “I’m not sure about this one—he says you treated him twenty years ago and he wants to see you. But there is no new pathology so I don’t know how urgent it is.” I looked at the consult request and did not remember the patient but there were several handwritten jottings on the cover sheet from the referring physician that listed phone numbers and beside them, “no answer at this number X 3,” and “Dr. Fielding hasn’t worked here since 2004.” Apparently some effort was made to track me down, since I have changed jobs a few times in the last twenty years. I said, “Well get the latest information on the patient and put him in the open emergency slot a week from Friday.”
So Friday came yesterday and this patient was scheduled at one o’clock. I like to review the charts before I see new patients, so I picked up the chart during a hurried lunch and read through it with a growing sense of recognition, and no small amount of dread. The man had been treated for advanced head and neck cancer back in 1994. He had presented with cancer on the lateral aspect of his tongue, which was excised by his surgeon. Six months later, he recurred both on the tongue, on the soft palate, and in his neck, with a large tumor wrapped around his jugular vein. His surgeon tried, even sacrificing the large vein, but he could not resect all of the cancer and the patient was referred to me for post-operative radiation therapy. Given that the man was only fifty one years old, his medical oncologist made the decision to give him chemotherapy along with the radiation, a decision which was considered quite radical at the time. Treatments for head and neck cancer back then were crude by today’s standards, and fraught with complications, and this man had had all of them.
By 2000, he could no longer swallow, and his esophagus had to be dilated. This happened again in 2008, and another procedure provided relief. His saliva never fully returned after treatment, and so in 2012, plagued with tooth decay, he began a series of extractions, augmented by hyperbaric oxygen therapy to prevent osteoradionecrosis of his mandible. Unfortunately this did not work, and he ended up having a portion of his jawbone removed. A year ago, he began to have a new issue—when he tried to swallow the food was going down “the wrong way” and causing him to choke, resulting in several episodes of aspiration pneumonia. It was becoming hard for him to go out socially, and enjoy a meal with friends and family. His carotid and vertebral arteries were narrowed, putting him at risk for stroke. Multiple recent studies showed no evidence of recurrence of his cancer, but there was scar tissue in the back of the throat which prevented the epiglottis from closing over the trachea when he swallowed. These were the things I read in his chart before I saw him, and I anticipated that our session together would be an angry one.
Tall, older and thinner than I had last seen him, the patient greeted me with a huge hug. His wife smiled warmly. As we sat and talked in our sunny consultation room, he described his current difficulties and told me that his surgeon had referred him back to me for electrical stimulation therapy of the throat muscles, which might help his aspiration. Our institution has an entire department for the rehabilitation of head and neck cancer patients. I groped for the right words to say to this man who had suffered through complications which are rare by today’s standards of care. I apologized profusely, and explained that now we have better ways of shielding normal tissues to spare patients the terrible late effects of treatment. I told him I would be happy to put in a referral to our swallowing and speech rehabilitation specialists. He looked at me in surprise, and said, “Doc, I didn’t come here for that. Dr. M (the surgeon) already put in the referral. When I found out you work here, I came to say thank you. I was fifty one when I was told that my chances of survival were 10 per cent. Now I’m seventy one years old.” He squeezed his wife’s hand and said, “We’ve traveled the world together. We’ve seen our grandkids graduate high school. We’re going on a cruise to San Francisco next week. Yeah, I’ve had my problems but we’re still having fun!”
Some folks are just “the glass is half full” kind of people. Having always thought of myself as one of them, I’m surprised it took me a whole consultation to recognize that in my patient. Taking care of cancer patients has always been a good way to remind myself that my own life is not so bad. Lesson learned, again.
I don’t have much in the way of eyebrows. They were victims of too much plucking back in the 1960’s and when you do that, sometimes they don’t grow back. There’s a very nice woman in Solana Beach who shapes and darkens what I have left, infrequently, when I bother to think about it which isn’t very often. I was in there about a year ago when she told me, “I won’t be at work for the next six weeks or so—I’m having some surgery.” Never shy when it comes to these issues, I asked, “What kind of surgery?” She said, a little too casually, “I’m having double mastectomies and latissimus flap reconstructions.” I said, “Why are you doing that?” She said, “Because I was diagnosed with ductal carcinoma in situ on the left, and I just want them both OFF.” Ductal carcinoma in situ is what we call Stage Zero breast cancer—non life-threatening, but it does need to be treated because in some cases it can progress to invasive breast cancer. Treatment options range from excision only, to excision plus radiation, to simple mastectomy for more extensive cases. In NO case, unless the patient carries the breast cancer gene, BRCA 1 or 2, as Angelina Jolie did, is bilateral mastectomy the recommended treatment.
Again, I said to this nice forty year old woman with no family history of breast cancer, “Did you at least SEE a radiation oncologist for an opinion? This is what I do for a living, you know.” She said, “No, I did not. My surgeon drew me pictures of the procedures, and he said I’d be back at work within a few weeks. This is what I want. I have a six year old son. I do not want to die of breast cancer.” Her mind was made up. In situations like this, I may offer an unsolicited opinion, but here my opinion was clearly not wanted. This was the right choice for her. It’s what she needed for “peace of mind,” and I was not going to stand in her way. She had her bilateral mastectomies, and her reconstructions, and true to her surgeon’s word, she was back at work within six weeks. She was very pleased with, and relieved by her outcome.
There are a couple of problems with this scenario. First of all, my breast cancer treating colleagues and I have noted a somewhat alarming rise in the rate of double mastectomies for unilateral breast cancer in non BRCA positive patients. The rationale for this is typically, “I want to do everything I can to reduce the chance of the breast cancer coming back”, but sometimes it’s “I want a matched set!” What patients are often failing to realize, and are being failed by their physicians in terms of their education, is that the biggest risk they have of actually dying is from the breast cancer they already HAVE, not the breast cancer they might be diagnosed with in the future. Once a woman has been diagnosed and treated for breast cancer, the risk of developing a contralateral breast cancer is about 1% per year, and the vigilance is stepped up accordingly—mammograms are no longer designated as “screening” but rather as “diagnostic”, and MRI’s are more frequently covered by insurance, not to mention the frequent blood work and body scans obtained in more advanced cases.
Second, prophylactic mastectomy and breast reconstruction is neither risk free nor does it often result in a “perfect breast”. Infections can occur, implants can be extruded, flaps can fail, and even if none of these things happen, the resulting reconstructed breast is insensate—in other words, it doesn’t FEEL like a breast to the woman who is wearing it. Even in a skin sparing, nipple sparing mastectomy, the nerve endings are cut. If an abdominal flap is used, the abdominal musculature is compromised—important for women who are athletic and need these muscles. The same goes for a latissimus flap. Not to mention the fact that many woman who are diagnosed with breast cancer are still of childbearing age and many still plan to have children. One can breast feed an infant with one breast, but not with bilateral mastectomies and reconstructions.
So if you have been diagnosed with breast cancer, please think long and hard about your treatment options and about what the goal is, which is to obtain local control of the cancer typically by either removing the breast, or by having lumpectomy and radiation therapy. The “peace of mind” obtained by removing the opposite healthy breast in a BRCA negative patient is not only just a pleasant mythology, but is also potentially dangerous, putting a patient at risk for complications when she needs to be healing and considering the adjuvant therapy, whether that be hormonal therapy or chemotherapy or radiation to the chest wall or affected breast, which will truly reduce her risk of recurrence and extend her life. And we physicians need to remember that principle of “Primum non nocere”—First, do no harm. We don’t remove other paired organs just because one is diseased, and we shouldn’t be doing it with breasts either. In my opinion, of course!
Ex-marines are some of the toughest patients I ever see, when it comes to dealing with pain from cancer. And CAREER ex-Marines have the market cornered on toughness. Take for example, an elderly friend in Kansas who woke up one morning with severe upper back pain, feeling faint, and decided as was his Marine Corps habit that a cold shower would be “just the thing.” The cold shower likely saved his life, since he was quite hypothermic when the ambulance arrived to take him to emergency surgery for his dissecting aortic aneurysm. Three months ago when I saw a new patient, a seventy year old former Marine, shifting uncomfortably from his chair to his feet and back to his chair, grimacing with pain, I knew it was serious.
This patient had undergone a radical cystectomy for bladder cancer eighteen months prior. In layman’s terms, his bladder had been removed and a portion of his bowel refashioned into a conduit to carry the urine outside his body into a bag. This he bore with no complaint. After all, Marines adjust. But a year later he began to have severe low back pain. His physicians treated him in the usual prescribed manner—physical therapy and anti-inflammatory drugs. When his pain grew progressively worse, they ordered an MRI of his lumbar spine which was negative, and he was prescribed narcotics. Unfortunately, when you order an MRI of the lumbar spine, you do not routinely get views of the pelvis. Finally, he presented to the emergency room with intractable pain and a pelvic X-ray was obtained. Much to the shock of the ER crew, half of his sacrum was gone, destroyed by recurrent bladder cancer that had invaded bone. That’s when he was referred to me.
I treated this patient with intensity modulated radiation therapy, in order to deliver the highest dose possible while sparing as much bowel as possible. He had a very difficult course of treatment—his appetite was poor and he lost twenty pounds; he developed a urinary tract infection which landed him in the hospital; he had diarrhea from the radiation and the chemotherapy which was given along with it; and finally he developed moist desquamation of the skin just over the palpable mass in the right sacrum. He finished his therapy, but just barely. I wasn’t sure I would see him again, but I didn’t want his wife to know that I had little faith, so we scheduled him for a six week follow up.
This was a tough week at work. On Tuesday one of my breast cancer patients was diagnosed with a brain metastasis at age 37, and another breast cancer patient, a lovely elderly woman, suffered a pathologic fracture of her hip from a bone metastasis. By yesterday, I was strongly contemplating calling in sick when I wasn’t for the first time in my life. After all, today was my sixtieth birthday and I had had quite enough of sadness for one week. But I didn’t–I came to work this morning to a fully booked schedule of follow ups and my ex-Marine was my last patient of the day. I was pretty certain he would be a “no-show.” I should have known better.
The man that I had known previously in a wheelchair, disoriented from his pain medications, came in with a spring in his step, color in his cheeks and his wife and sister in law in tow. He gave me a huge bear hug, and proudly unveiled his behind to show me how nicely his skin had healed. He told me that he was nearly completely off of his pain medicines, and that he felt so much better that last night he had shot a game of pool. He said he was looking forward to Christmas, and to a better year next year. He told me that the medical oncologist had ordered a follow up MRI of the pelvis, but he was going to wait until after the first of the year—he knew that his respite from pain was a gift horse whose mouth did not need an examination.
I got some very nice birthday presents this year and I appreciate each and every one of them. But sometimes, for the doctor, the best present of all is seeing her sickest patients feel better. Happy Birthday to me!
Every year when the time changes and the days get shorter and the nights longer, I start to feel it. By the time that the halls are decked with boughs of holly, now shortly before Thanksgiving, the season of airport delays, of frantic last minute shopping, of eating and drinking too much and then doing it again has begun, and with it, for many, the season of sadness. At a time when festivities and noise are ramping up in the outside world, the Cancer Center becomes curiously still and quiet.
No one wants to get chemotherapy and radiation for Christmas. It is far easier to ignore that lump or bump or missed mammogram than it is to schedule one more thing—a doctor’s appointment—when there are trips to take, family to visit and cookies to bake. And for those who have been recently diagnosed, it is rare that the treatment can’t wait a few weeks, just until “after the holidays.” Although the “C” word strikes terror into our hearts, most of the time cancer truly is not an emergency. This time of year, lunch breaks actually appear on my schedule, and the therapists cheerfully ring me up promptly at five to check the localization films for the day.
It isn’t hard to squeeze a new patient in this time of year, but when I get asked to do so, there is a very good chance that that patient is a little bit sicker, a little bit more symptomatic, a little bit more urgent and oftentimes a little bit younger than the average patient that I see though out the rest of the year. Especially if that patient is hospitalized. Every year, there is someone—a husband, a wife, a child, a brother—who won’t be home for the holidays.
And so tomorrow, when you raise your glass around the Thanksgiving table, and give thanks for all of the blessings you have, do not forget to give thanks for your good health and that of your family, if you are lucky enough to have it. And send out a prayer, or a positive thought, or an email or card to those who have not been so lucky. It will mean the world to them. Nobody wants cancer for Christmas.
There is cancer. And then there is CANCER. The first refers to the ones we discover early, excise completely and move on—a tiny rent in the whole fabric of a life, easily mended or patched but never quite forgotten. But the second, CANCER in capital letters—these are the ones that can never be discovered early enough, the ones that cause gaping holes in the hulls of unsinkable ships and the whole ocean falls in after the vessel goes under. This kind kills, and kills so quickly that there are very few survivors left to mount the political assault necessary to raise millions for research and a cure. These are the cancers that have no armies in pink T shirts walking or running for the Holy Grail. Highest on my list of evil enemies these days is cancer of the pancreas.
In the early spring of 2011, my friend Janet Porter, President of the Scottish Deerhound Club of America, developed abdominal pain that she initially thought was gallstones or an upset stomach from food poisoning. Her discomfort progressed rapidly and then, almost overnight she became jaundiced, with a yellow cast to the whites of her eyes, tea colored urine and light colored stools, because the blocked bile duct at the head of the pancreas cannot empty into the duodenum as usual, and the bile backs up into the blood stream and leaches into the skin. She was diagnosed quickly, worked up well, and pronounced a good candidate for a Whipple procedure, one of the most difficult operations that a skilled surgeon can perform, involving removal of most of the pancreas, gall bladder and common bile duct with considerable rearrangement of the indoor plumbing. Janet was “lucky”. Most patients diagnosed with cancer of the pancreas are inoperable and incurable from the minute they are diagnosed. Janet was a smart cheerful optimistic person. She underwent this difficult surgery, and then took months of chemotherapy and radiation, finishing late in 2011. In the spring of 2012, she was able to attend the National Scottish Deerhound Specialty show which was held in Michigan. A week later she was told that the cancer had recurred in her liver and despite additional treatment she passed away on August 20. She was 59 years old—we were born the same year. From the time she was diagnosed she lived every minute to the fullest—she saw her family, took care of her friends, and when it became clear that she was not going to survive she did what every good dog person does—she found homes for her beloved hounds. I wrote something on the Deerhound List to try to describe her courage, and people liked what I wrote, but all I could think of, quite inappropriately, was title of that old song from The Rocky Horror Picture Show where Brad sings to Janet, in front of a cemetery—“Dammit Janet”.
Today in clinic I saw another patient with pancreatic cancer—this time a lovely woman who is 87 years old. One of the best surgeons in the country had deemed her operable when she was diagnosed in May, but she hesitated, knowing that complications from such radical surgery could abruptly end her life, or at the least, affect the quality of her remaining days. She was started on chemotherapy and did well initially, at least well enough to be considered for definitive radiation therapy, which is used when surgery is not desired or possible. Last week, a scan done for treatment planning showed that, like my friend Janet, the cancer had already spread to her liver. Today I explained to her and five of her visibly distraught middle aged children that there would be no point to pursuing radiation therapy to the pancreas. I said it would be like closing the barn door after the horse had gone.
Is an 87 year old dying of cancer less sad than a 59 year old? How do you compare the life well lived for all those years which should have ended quietly, rewarded with a peaceful passing with the life that ended early, devastating friends and family? Sitting in my exam room with that family today, I certainly could not say. But tonight I am still thinking, damn it. Janet.
This is the question I get asked the most: “So Doc, how do I know that this is working?” Sometimes my patients come to me with visible or palpable disease—something on the skin that they can see fading away, an enlarged lymph node in the neck that shrinks visibly during treatment, a lump or a bump that disappears, much to the gratification of both patient and doctor. But most of the time, this is not the case. Most of the time, the tumors are either deep inside, and not seen or felt, or the tumor has been removed, and we radiation oncologists are called in to do “clean up” work after the surgeon. As disturbing as it might be to a patient, most of the time, we don’t actually know that “it”, meaning the radiation, is working.
I’m old enough to know that life is not black or white, right or wrong, on or off. But still, as an optimist, I am a person who likes absolutes—I have always believed that if you play by the rules, you deserve to win. I dot all of my “I’s” and I cross my “T’s”. I was the kid who NEVER colored outside the lines in my coloring book, and now that I am a grown up, everything should be in place: my patients will attest to the fact that I am likely to rearrange the furniture in the consultation room if the cleaning people have set anything off kilter. I don’t see this as obsessive-compulsive—I see it as maintaining order in a disordered world. I like to see justice served, the plates cleared off after dinner, and I do not eat dessert first. In my linear world, the beginning is the consultation, the ending is the cure. The daily radiation treatments are the means to that end. Why should my patients expect less?
So what do I tell my patients who ask tentatively, half way through treatment, “Is it working?” when they have the invisible tumors, the ones deep inside, or the ones where the surgeon took most of it and we’re seeking out and destroying those microscopic stragglers? One of my teachers once said, meaning to be humorous, “Radiation works best when there is no disease!” Even the patients with the palpable masses that melted away—how can we be sure that every last malignant cell is gone? At the end of treatment, my patients want to be told that their disease has been vanquished and will never come back. Some doctors will oblige. They will say “We got it all”. Or they say, “You are cancer free.” This is despite the fact that there is not a single diagnostic test on the planet that can support that claim.
We oncologists prefer to use the word “remission.” Or “complete response.” As in, “You are in remission.” Or “You have had a complete clinical and radiographic response to treatment.” We would love to say, “Your cancer is cured,” because that is ever so much more satisfying than stating the truth, which is that we do not and cannot know for sure. Sometimes, somethings, some days—you just have to take it on faith and try to move on. Even if you are not a believer.
Here is what I tell my patients. I tell them that first the side effects will fade from their bodies and their memories. And then there will come a day when they will actually miss the camaraderie and support that they got from their chemotherapy and radiation teams. I tell them that the sun will rise and the sun will set, and they will bravely put one foot in front of the other. And one day, before they know it, they will wake up and stretch and smile and they will have forgotten, just in that moment, that they ever had cancer. And that’s when they will know, it worked.