July 1997
Cancer struck me at a most inopportune time, but then, when is the disease ever convenient? I was a first-year Business Student at Dartmouth?s Amos Tuck school, and it was nearing the end of spring term. On Monday morning, May 12, 1997, I noticed in the shower that my right testicle seemed larger than my left. Having a million things to do, I promptly forgot it, and went about my hectic schedule. By Wednesday morning, however, the affected testicle seemed to have grown even larger, and was now about twice the size of the other. I knew this condition was not normal, so I went to the College Health Services that day to have it examined. The physician there thought it was probably a cyst, or a collection of fluid called a hydrocele. To be safe, she referred me to a urologist at the Dartmouth-Hitchcock Medical Center, who examined me the next day. When the urologist saw my testicle, she knew it was no hydrocele. I had a scrotal ultrasound immediately, which confirmed a heterogeneous mass. The urologist told me that the testicle needed to come out at once, and that the tumor was most likely malignant.
My first reaction was shock: How could this be happening? Then terror: Oh God, tell me this is not happening. Then disbelief: How could they be so sure? How would I live with only one testicle? There was no time for contemplative introspection. I called my parents in Massachusetts and told them they needed to drive up here to help me through this surgery. I called the Associate Dean of Students at Tuck to let him know I would not be in classes for a while, and that I probably had cancer. Blood was drawn for my baseline tumor marker levels. My nightmare had begun.
I had never been seriously ill before the cancer struck. I was 33 years old, 6 feet tall, 195 pounds, and healthy as a horse. I even played rugby for Tuck, with all those indestructible 20-somethings. Now I was facing an inconceivably frightening disease, and for the first time, I was seriously contemplating my own mortality. I was afraid. I didn?t know the first thing about hospitals, or even if my student insurance policy would cover all the procedures I would need. I didn?t want to find out these things either, but find out I did, willing or not.
Once in the hospital, I soon learned about such commonplace details as anti-embolism stockings and how an IV is inserted. The doctors said the surgery would last about an hour, and as soon as I recovered from the anesthesia, I could go home. I awoke in recovery with a small scar on my "bikini" line. The nurses gave me Percocet for the pain. By evening I was home and spent the next day or so just resting. By Monday, I was feeling good enough to drive myself to my CT scan appointment at the hospital. We needed to find out how far the disease had spread, and determine my course of future treatment.
On Monday, May 19, I underwent CT scans of my chest, abdomen and pelvis, and then met with my urologist. That same day, my official pathology report came back as well. It was cancer all right, a mixed germ cell carcinoma, and what a mix it was: about 75% seminoma, with about 5% each of embryonal carcinoma, yolk sac tumor, mature and immature teratoma, and synctiotrophoblasts. Everything but the kitchen sink, I thought, but thank God no choriocarcinoma, which my urologist had referred to as a "potentially bad actor." All my lymph nodes appeared negative by CT (that is, all were less than 1 cm in size), thus classifying me as clinical Stage I. The urologist assured me how "curable" TC is, especially when caught this early, but somehow I found little comfort in the news.
That day I officially joined the ranks of cancer victims. At first, I found it hard to hide my despair, but my attitude changed by evening. I made up my mind to fight. I marked the occasion by making myself a great steak for dinner, cooked au poivre, with a baked Idaho potato and pencil-thin steamed asparagus. I dined alone, but toasted my own good health with a glass of Cabernet, and looked forward to the day I would join the ranks of cancer survivors.
Since I had no obvious metastases, the only way to determine whether any cancer remained was to test my blood for tumor markers. My pre-orchiectomy tests showed normal AFP, but my beta-HCG was over 5500, quite elevated. The continued presence of HCG in my blood for sure would indicate additional cancer, because normal men cannot make HCG (it is the pregnancy hormone). However, the marker?s absence would not indicate absence of cancer, because many of the cell types in my "mixed" tumor did not produce any markers anyway. So we just had to wait and see if I would eventually normalize. If it did not, I would need chemotherapy right away; if it did, I faced the possibility of major abdominal surgery.
With a textbook half life of 24-36 hours, this marker should come down to normal (<5) in a matter of about 10 or 11 days, right? Wrong. My HCG level did not decay rapidly; it only drifted down. I had blood tests every few days for weeks, and my levels lazily dropped a few here, a few there, till finally, on June 20, four weeks later, my beta HCG was normal. I suspected there might be some "occult micrometastases" (medical-ese for "a tumor so small we can?t find it") responsible for producing some HCG and confounding my blood tests. As it turned out, my personal HCG half-life was not 24-36 hours, but 3.5 days; my levels came down in their own sweet time. In the interim, I needed to finish the academic year at Tuck, and tried to get back into a quasi-normal routine.
I returned to school a few days before final exams, physically recovered from the orchiectomy, but mentally detached and preoccupied. I could not concentrate on anything. To my near amusement, the classroom experience was almost surreal: professors were writing numbers and equations on the board, students were raising their hands and speaking, all while I watched and listened, but nothing was sinking in. For me, it was dreamlike and bizarre. Naturally, I was concerned about my academic record, and how I would possibly make up the work I had missed. Before long, though, I decided I needed closure on the school year more than I needed excellent grades, so I took 3 out of my 4 finals on time, despite the major gaps. (I postponed one exam a few days so I could get a tutor to cover some of the missing material.) The Tuck administration and faculty were absolutely understanding of my situation, and accommodated my wishes to the letter. They realized as much as I that I needed to get school behind me in order to concentrate on beating this disease.
While waiting (and hoping) for my markers to normalize, I finally had the opportunity to grapple with how this disease was to affect me personally. The parade of events associated with the orchiectomy had ended, and with academic concerns behind me, I used the downtime to educate myself about my condition.
My intent was twofold: First, I wanted to move myself into a strong place, psychologically. I knew that in order to fight this disease, I had to get over the initial trauma and fear, and come to grips with what would lie ahead. I made appointments with two different counselors. The first was a psychologist who helped me sort out the rush of feelings inside my head. The second was with a chaplain, who helped me examine the spiritual side of serious illness, and come to grips with facing mortality at a young age. Also, I made special attempts to reach out to friends and family members during this time, and let them know I needed their support and prayers. They responded with a vigor far beyond my expectations. If there is a bright side to the horror of this disease, it is that by falling ill I learned anew that there are a lot of people in this world who care about me. I am absolutely convinced that the support of my family and friends was nothing short of instrumental in my eventual healing. They kept my spirits high and my faith strong by letting me know that they how much they love me. Relearning this lesson so vividly was almost worth the price I paid. I encourage others not to wait until tragedy strikes to reach out to loved ones, but to do it today, even right now.
Second, I sought to arm myself with as much technical information as I could. I researched testicular cancer in the library and on the Internet. Somehow I could muster the concentration for this task more easily than I could for my schoolwork. In my case, knowledge was power. When I had to make the tough choices, the judgment calls, to weigh the evidence and decide what to do to help myself, I did not just have to take the doctors? word for it. Don?t misunderstand me, I have nothing but the utmost respect for the urologist, oncologist, and surgeon at Dartmouth Hitchcock who worked on my case. All three are consummate professionals and leaders in their respective fields. Nonetheless, I refused to be a passive bystander while they fashioned my treatment. I asked the tough questions; I made them explain details to me; I did my best to participate in the decision making as much as a non-professional can. I would encourage anyone to do the same, because as my knowledge grew, my feelings of helplessness waned, and my feelings of hope increased commensurately.
The toughest decision I faced was whether to have the dreaded retroperitoneal lymph node dissection (RPLND) operation, or to go with aggressive-conservative therapy, also known as surveillance, or "watch and wait." I knew the RPLND was major stuff, and there was a chance of nerve damage that would render me infertile, but it was the only way to a potential cure without chemo. However, about 2/3 of patients who undergo RPLND prove to have negative nodes, meaning they needlessly subjected themselves to major abdominal surgery. On the other hand, if I went the surveillance route, and a tumor did appear, I would have to go directly to chemo, and maybe require surgery anyway. There were credible arguments on both sides.
Considering my mixed bag of cell types included some embryonal carcinoma (a "spreader"), and that I was in relatively robust health, I concluded that I was a better surgical candidate than a chemo candidate. Also weighing in favor of the RPLND was the fact that my surgeon had done many of these procedures before. Using the newer "nerve sparing" technique, he had a perfect record of preserving fertility in his patients. (All the same, the doctors encouraged me to cryopreserve [sperm bank] several sperm samples, "just in case." I did so.) Most importantly, after a lot of serious soul searching, I realized that I would not be able to withstand the psychological anguish of being tested over and over again, test after test, month after month, waiting and watching, wondering if I would still be normal, or whether a new tumor had grown since my last appointment. I wanted this cancer thing over with. I wanted to get on with my life as best I could. I opted for the RPLND. The doctors scheduled my surgery for July 2.
The day before the operation, I could take no solid foods, and had to drink a gallon of Colyte, a beverage designed to clean out the bowels. (Colyte is apparently a standard preparation for many abdominal surgeries.) After drinking 128 fluid ounces of that viscous, cherry-flavored stuff, I?ll probably never eat a cherry again. I was awake till after midnight with the worst case of diarrhea imaginable. However, I understood why the precaution was necessary: should there be any trauma to my bowel during the operation, the chance of serious infection is much lower if the bowel is absolutely empty. So I ultimately grew to consider the Colyte just one more necessary step towards beating TC for good.
My parents and I arrived at Dartmouth-Hitchcock Medical Center shortly before 7 am. I soon received my now familiar IV and anti-embolism stockings. After a detailed discussion with the anesthesiologist, I opted for both inhalation anesthesia and an epidural catheter a small tube placed in the lower back through which medication can be delivered. I recommend this combination for two reasons:
1] With an epidural in place, less inhalation anesthesia is required, so there are fewer side effects and easier recovery.
2] The epidural is also handy for post-op pain control, allowing smaller doses of narcotics, again with fewer side effects. The combination seemed safer to me than just gas, but I did have to come to grips with getting a big needle in my back. (Actually, it wasn?t that bad; the surgical prep team placed it in and checked its function just before putting me under.) As I lost consciousness, I said one final prayer, and placed my faith in the care of God and my doctors.
I awoke about 4 hours later in the recovery room. To my surprise, I was connected to a frightening array of tubes and wires: the epidural in my back, the ever-present IV, a foley catheter (for urine collection), a naso-gastric (NG) tube (removing my stomach acids so I wouldn?t vomit), and an ECG machine, monitoring my pulse and respiration rate via electrodes on my chest. My throat was sore from the endotracheal tube, and what felt like an incessant post-nasal irritant (the NG tube). I had control of push-button morphine direct to my epidural, and I was using the maximum allowable dosage. The nurses had also put inflatable wraps on my lower legs, to help with blood circulation. (The "moon boots" were actually not too uncomfortable, but I found the noise from that little air pump annoying, so I asked the nurse to put it in the closet.) There I lay, attached to something by just about every limb and orifice, but the surgery was over, and, thank God, it had gone perfectly.
As I awoke, I remember seeing a crowd of nurses and doctors, and there seemed to be a lot of loud talking back and forth among them, checking this and that. There were electronic beeps when my breathing slowed, and more beeps when I pushed my morphine button; there were mechanical hummings and whirrings from the air pump, the NG vacuum, and the adjustable bed. Suddenly, I heard the familiar voice of my urologist cutting through the hubbub: "Good news. The frozen sections were all negative." Yes! This meant that there was no evidence of any spread of the cancer. The result still had to be confirmed by an official pathology report (which would take about a week), but for the first time since May, I saw a flicker of light at the end of the tunnel. Through all the tubes, wires, and chaos, I breathed a huge sigh of relief, hit my morphine button one more time, and tried to get some rest.
I slept poorly that night, but the next morning, my mood began to improve, because the doctors removed the NG tube and the foley catheter. I was still in considerable pain, but losing those two attachments really gave my spirits a major boost. Later that morning, my mood got even more help when the doctors removed the epidural. I began receiving phone calls from family and friends, and no less than four flower arrangements were delivered. Visitors began showing up and wishing me well; even a few of my professors stopped by. By that afternoon, I was up and walking: slowly, but by my own power. I finally felt it was the beginning of the end of the nightmare.
The next day, I lost the ECG monitor, and had only the IV left as an appendage. I was doing my prescribed breathing exercises, walking the halls regularly, and learning how to cough. (Splinting the sizable incision with a pillow is critical to reduce the pain from coughing or sneezing.) Toradol (an IV anti-inflammatory drug) kept me nearly pain-free round the clock. I was discharged the next morning, after just 3 days in the hospital. I moved slowly and felt very weak, so I got into the habit of taking long afternoon naps, which seemed to help my progress. I could feel myself improving every day. As long as I kept up with my medication (Motrin and Tylenol-3 with codeine), the pain was tolerable.
By now the word of my successful surgical outcome had spread far and wide. I received a deluge of visitors, phone calls, cards, and email nearly every day. It seemed I spent my initial time at home either asleep, on the phone, on the computer, or with guests. Classmates, faculty, administrators, family, and old friends poured out their support. I was deeply touched by their sentiments, and my condition continues to improve with their help.
The official pathology report came July 10: all 12 lymph nodes were indeed negative. I thank God for my fortunate result, and for bringing the network of people into my life who supported me.
Assuming no further complications, I will be returning to Business school in September, and will graduate next June with my class. After a few years of follow up, I will be an official cancer survivor. Much sooner than that, however, I hope to look upon this disease as one small event in my life, not the all-consuming tragedy that it had felt like these last few months. Maintaining my faith in God, reaching out to loved ones, and cultivating a positive attitude were all essential parts of winning my TC battle.
John F. Cavallaro