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John Berresford's Story...My Testicular Cancer



 
 

This is the story of my testicular cancer.

The only things you need to know about my earlier life are that I came from a wealthy Puritanical family and that, in 1981, I had barely spoken to any of them for several years. Partly for that reason, those years had been the happiest of my life. About a year before, I woke up to the fact that I was gay and was playing the field with enthusiasm. I was a 31-year old successful lawyer in Philadelphia, specializing in litigation for the telephone company. One day in the fall of 1981, I passed a prominent Judge on Broad Street and he bowed his head as we passed. I took this as a compliment. As I continued my walk home, I said to myself “I’m only 31 and I already have judges bowing to me. I’m bored. God, if you exist up there, send me a new challenge.”

The following Monday, November 12, I decided finally to attend to something that had been bothering me more and more. My left ball has been growing slowly hard and larger than the right one. The leftie was about the size of a golf ball. There was no pain in urination or ejaculation, and none of my boyfriends or one-offs made a comment about it, so I figured nothing was wrong. But I decided to see my doctors (a group at Thomas Jefferson University Hospital) anyway. A young doctor felt it and said that it couldn’t be a pinched nerve because they are “exquisitely painful.” He sent me to a urologist across the street.

The urologist saw me the next day (I understand that in some ‘socialized medicine’ countries, you wait months to see a specialist. Had I been in such a system, I would have died around the end of 1981.) He was a short, middle-aged man of Australian extraction, with a trim mustache. He reminded me of the Col. Nicholson character played by Alec Guinness in The Bridge Over the River Kwai. He interviewed me and took a urine sample. Then he proceeded to feel up my left ball for a few minutes as we talked about everything except the fact that another man was feeling up my left ball in the middle of a workday. Then, in his trim accent, he said calmly said “Well, John, I’ve felt it long enough. I know what it is. It’s a tumor and it’s got to come out.”

I could not have asked for bad news to be stated more gently and effectively.

When he said “tumor,” I immediately thought of cancer – a word that connoted death much more in 1981 than it does today. I figured that, in order to get the unvarnished truth from him, I had to appear calm. I asked, “Does this mean I have cancer?” He gave me a lengthy, roundabout, incomprehensible answer, which I took to mean “Yes.” I asked him “What is the survival rate?” He answered that there were three kinds of tumors. Most of them were seminomas, the second most common was embryonal cell tumors. They both have survival rates of about 80%. Then there’s a third kind – I recall that its name ended in “oma” and that it amounted to about 10% of the cases. He said something that politely conveyed that the third kind of tumor was fatal. I was surprised to hear him say that he would not know what kind of tumor mine was until they cut me open and looked at it. Gee, maybe doctors don’t know everything.

I asked him what might have caused this. He said it happens to otherwise perfectly healthy young men between 18 and 35. It’s been linked, in a small percentage of cases, to a fertility drug that was in widespread use in the early 1950s. That was not my case.

I then asked the doctor “What puts you in the 80% or the 20%?” He said it was hard to predict. He noted that I’d told him I jogged and worked out a lot, and he said that he’d observed that testicular cancer occurred in a lot of people who are very physically active: “I’ve done a lot of surgery on footballers.” (Please note: I received different answers from each of my oncologists. One said that the most important factor was the patient’s attitude. The other said that if action was taken before cancer reached your lungs or brain, you would survive; if it had reached there, you should start putting your affairs in order.)

I asked the urologist if he would cut open my scrotum and remove the ball. He said no. If you do that, the trauma for the scrotum is so great that the remaining ball withdraws into your torso. Each ball is connected to a sort of string that goes up into the torso. We cut at the line where your leg meets your torso, pull the string, and the string and the cancerous ball come out.

The urologist told me that, based on what little we knew, survival was the likeliest future. But he made no prediction about my case. He added that, even if the long run prognosis is good, the next six months are going to be really rough. We’re talking about two, maybe three major operations, and then chemotherapy or radiation therapy depending on what kind of tumor it is, and those are really rough.

The urologist told me that he’s remove the tumor on Thursday morning and I should check into Jefferson University Hospital Wednesday afternoon. (Philadelphia is a good place to be seriously ill, by the way. I read that 15% of all the MDs in the United States got their medical degrees there.)

I recall having some blood tests and X rays. I don’t remember exactly when they were done. My recollection of what they showed may be wrong after all these years, but I recall that (1) the X rays showed that the cancer had not spread to my lungs or my brain (good news), but (2) the blood tests showed me with a very very high amount of cancer, several times more than what was usually fatal. So, go figure.

I went back to work. I had never been seriously ill and had no idea whether my insurance (Blue Cross Blue Shield of Pennsylvania) covered cancer. The office manager told me it did. Because I was squeamish about testicular caner – a few hours before I had not known there was such a thing – I told the manager I had stomach cancer. Maybe this alarmed her, because it was fatal back then.

I also told other people in the office, a few of my best friends, and my older brother (the only family member with whom I was on good terms). One friend who knew some doctors called me back soon and said that, if you have to have cancer, testicular cancer is the kind to have.

I called my boss to tell him that I had cancer. When I began talking about my work, he cut me off. He told me that until I was completely well I should forget that I had any obligation to my job. Take off all the time you need and, if there is ever a bill that Blue Cross won’t pay, send it to me and I’ll see that it’s paid. I will never forget that.

My emotional state was numb. I was not raised to have feelings or to express them. Perhaps that was helpful in this experience. I was numb partly, too, because the cancer diagnosis was so new and unexpected. I had not given a moment’s thought to dying at 31 (AIDS was just a blip on the horizon, only people in New York and San Francisco got it). I didn’t even know you could get cancer in a testicle. I was (and still am) self-reliant and not given to self-pity or fear. My childhood had taught me that life is sometimes awful and unfair, but that surviving those times is what gives life depth and meaning.

The greatest regret I had about going into the hospital was that I’d have to put my Springer Spaniel, Sarah, in a kennel. The greatest fear I had about death was leaving her alone in the world.

I bought some pajamas and checked into Jefferson Hospital Wednesday afternoon. The next morning, no breakfast, a couple of shots, onto the gurney, and into the operating room. The surgeon bustled in, bent over to look me in the face and chirped “Good morning, John, how are we today?” There may have been a small joke about being sure to remove the LEFT testicle – which is probably why he greeted me by name, to be sure exactly who I was: Berresford, remove the left one.

The next thing I remember the operation was over and I was back in my room. Sharing the room was a speechless old man who had had a serious stroke. I remember very little of the next few days, except for a couple of phone calls and watching daytime TV. (Philadelphia did not have cable TV yet – the City Council members had not agreed on the form and amount of the graft.)

I recall the surgeon telling me that blood tests showed 80% of the cancer gone. He also said I had had an embryonal cell tumor.

One evening I was still in the hospital and getting used to having only one ball. I was listening, on an early Boom Box, to a London Symphony Orchestra performance of Rachmaninoff’s Second Symphony, one of my favorites. At the slow, joyous coda, which takes about a minute, I began crying and suddenly felt a tingling in my scrotum where my left ball had been; it slowly spread over my whole body. When the music ended, the tingling ended. I felt, suddenly and deep down, that everything was going to be OK. (I did not take this as a sign that I was going to survive. I might die, but that would be OK, too.)

More thoughts occurred as I recuperated from the first operation. Maybe I’m going to die a lot sooner than I expected. I’d always wondered what came next (I thought something did), and now I’m going to find out soon. Great, if that’s what’s going to happen. In one sense I wanted to live, but in another I began preparing to leave this world in contentment. One thing I was surprised happened was a growing, and finally total, indifference to everything in this world. It’s hard to describe. The best I can do is that I felt like my present life was a book that was closing. I saw myself as a little man reading a huge book by walking along one line after another and reading the words. This book was my life and, well, it turned out to be a lot shorter than I had expected. It was closing; the cover was about to slam shut and I’d better get out of the way. But nearby another book was opening – the next life. I could hardly wait to see what was in it. Would I see my Grandparents again? Would I get to know my Father (who died when I was 3)? One thing that always puzzled me – if he looks the way I can recognize him, how will his friends from childhood recognize him?

My oldest friend and my brother came down from New York City to take me home Saturday at noon. (I lived in a small house a few blocks from Jefferson Hospital.) That morning I decided I didn’t want them to be nanny-ing me, so I walked home myself, started a fire in the fireplace, iced some champagne, and met them at the hospital. We walked home and then to a restaurant near the Delaware River.

When they left, I got Sarah out of the kennel. When she and I were back home, I undressed and got into bed under the covers. Sarah got up on the bed with me and placed her head exactly where the Doctor had cut me. She knew, she cared.

I was back at work the next Monday. Sitting down, sanding up, and walking produced a sharp burning sensation along the scar, but it was tolerable and lasted only a few seconds. It was worth the pain to sit down, to stand up, and to walk around – to be part of the world.

Everyone was very sympathetic; great people. The phone ‘rang off the hook,’ and my mailbox was full, from people I had not spoken with in years wishing me well. Some said they had even cried when they heard I had cancer.

Some weeks later I was able, without too much pain, to ride the train up to New York City and have Thanksgiving Dinner with friends at the Plaza’s Oak Room. It was a great Thanksgiving. I had little idea what lay ahead because the whole experience was still so new to me.

The only sad-making thing was that a very handsome and charming guy whom I had dated three times (we’d had sex once) dumped me instantly and totally. I ran into him on the street and he told me he’d been busy, but I suppose he was just frightened of cancer. We’d only been on three dates, after all, too. Maybe I was just a roll in the hay to him – there are worse things to be – and cancer was too serious. He wanted a hot date, not melodrama. It hurt, but I can’t blame him.

Generally, I found that all my human relationships changed. People either got much closer to me or ran away as fast as their legs would take them. And who fell into which group surprised me. On the whole, there were more people who got close than who ran away. The latter group – to hell with them, they were going to run away from me someday.

Three weeks later I was back in Jefferson for the second operation. It was supposed to be mopping up exercise, cleaning up the little cancer that remained in the groin area. I was rather blasé about the whole thing. Again, the operation was early on a Thursday morning and began early with a chipper greeting from the surgeon. I remember expecting the operation to be over by 10 am at the latest.

When I awoke, I saw the surgeon’s face close to mine, his hair covered in a shower cap. He said “Well, John, we found a lot more cancer that I expected, but I think we got it all.” I thanked him and he went on to his next operation. They wheeled me into my room, lifted and moved me onto the bed, turned out the light, and left me alone. I called my brother, got his wife, and told her the good news.

It was the early afternoon – this had been no mopping up operation. I fiddled with the controls on the bed and raised my torso so that, if I turned my head, I could see out the window onto Chestnut Street. I was on the second floor of Jefferson’s new wing – where, I later learned, they sent you if you were really sick. Through the window, I saw a boring urban in the powdery yellow light of a December afternoon. A man in a heavy overcoat was walking into the wind, with his head on his porkpie hat to keep it from blowing off. I said to myself “How beautiful that is” and went to sleep for a long time.

I had a catheter up my penis, an IV drip in one arm, and a tube up my nose and down to God knows where. Until Sunday night, I received a shot of Demerol every four hours. Each shot made me indescribably comfortable. Three hours after each shot, any movement brought sharp pains all over my torso. Under demerol’s influence, I saw colors that I have never seen since and had dreams of short jerky movements that I have never had since and that are physically impossible. Also every few hours a nurse walked in and used a kind of bellows on a tube that entered my nose. She drained my stomach and spleen (or another organ) of fluids. One organ’s fluids were green and the other was blue, I recall. The colors, the jerky dreams, the green and the blue are about all that I remember of the next few days – except for the lovely, dreamy effects of the demerol. Two friends visited me, without invitation, and left me with “a box of feelings,” which I found silly to put it politely. All I remember saying to them is that I couldn’t wait to get all the tubes out and back home. After leaving my family, I had composed a job, a life, a home, a circle of friends, a dog, and hobbies that I loved. I just wanted to get the hell back to them.

A few other memories of my recovery from what one doctor called “The Big Zipper” surgery. My torso was covered in gauze and bandages that stretched from my neck all the way down to the base of my penis. A few days after the operation, a movement I made caused this breastplate to popup a bit, and I looked down. I gasped. What I saw was a red line (the surgical scar) with black stitches across it, stretching from my sternum to my crotch. The distance seemed to me the length of a football field. After I admired the a lovely detour around my belly button, it sank in on me how much trauma my body had been through.

Second, on Sunday I made the bold and slightly insane decision to take a shower. I am meticulous about my appearance, and I had not washed my hair in days! Somehow, and I suppose at great risk to the containment of my organs, I managed to move all the tubes my IV pole and then I moved my body to the bathroom, gave myself a short shower, replaced the IV and nose stuff in their former locations, moved my cleaned body back to the bed, and popped the gauze breastplate back on. I suppose much of me might have spilled all over the floor, but my hair looked presentable again. And I had done something, not just lain there like a sack of potatoes.

The surgeon visited me one day and said that blood tests had shown that the second operation has removed all but 2% of the cancer I had when I first saw him. He said that he made an incision near the top of my penis and first removed the lymph nodes closest to the cancerous testicle. He sent them to the lab down the hall and they tested them for cancer. They reported back to him that there was cancer in the lymph nodes. So, he cut a little higher, removed the lymph nodes, sent them down the hall, and so on. He said that the lymph nodes around my spleen were so mushy that he could have removed them with a spoon. I recall him also saying that the lymph nodes around my aorta were about to start damaging that essential pathway. It seemed to me that perhaps I would have died had the operation been a week later. He said that he reached the point where the only way he could cut higher was to break open my rib cage. He figured I’d had enough for one day, and stopped.

He said that I was well into Stage 2B of the disease. 2% of the cancer that had been in my body was still there, and it was likely diffused all over, so I would need chemotherapy.

After a few days my digestive organs got over the trauma I could take Jell-O and yogurt. One day I lunched on a chicken breast – a whole chicken breast!! Half an hour later, I thought my stomach was going to explode. It didn’t.

Not long after that, the first of my two chemo doctors came to see me. We had a pleasant conversation. He said I’d have two long stays for chemo, about 10 days each, separated by a month or so to recover, and then, after another month to recover, one weekend of chemo at the end. He may have told me about what chemicals were going to be put in me, but I have forgotten. I asked him what the side effects were. He said that they didn’t like telling people because the side effects were so many, some of them were really horrible but almost never happened, and telling people more often than not just scared them out of their wits. He said that chemotherapy kills off whatever is growing fast inside you, and that includes cancer and, typically, hair and the lining of digestive organs. So, the most typical side effects, other than killing cancer, are hair loss and nausea. But the side-effects are temporary, he said; the hair, for example, starts growing back immediately. I let it go at that.

I left the hospital, walking home again and greeting my brother and oldest friend in my “I don’t need your help” manner. And, in fact, I didn’t. I have found that asking for help when you don’t need it is a slippery slope to parasitical dependence. I also learned that the world is full of people who want others to be dependent on them. These people want to convince you that you need them so they can get their hands in your wallet or, if you’re cute, in your pants. This was obviously not the case with my brother or best friend, but I also sensed that if anyone were camped outside my hospital room “helping” me all the time, they might die of boredom and I would certainly die of exhaustion.

With my brother and oldest friend I lunched at a wonderful French restaurant called Deux Chiminées. I ordered duck breast and, when I could only get one down, asked for a doggie bag. The waiter asked if there was something wrong and I replied no, I was just out of the hospital after major surgery on my abdomen and I wanted to save it for later. This started another bit of kindness from strangers. The people at that restaurant saw me through the next months of hair and wait loss and always asked after me with sincere concern and gave me their best wishes.

I returned to work the next Monday. It took me 25 minutes to walk there instead of the usual 15, but I made it. I found that sitting at a desk writing on paper, with my torso and upper legs forming a 90 degree angle, gave my scars and stitches a chance to contract. So, when I stood up, I would walk crouching over like Groucho Marx for a few minutes. Some of my colleagues laughed at me and I joined in on the laugh.

One night I rolled over in bed for the first time. Holy hell, I felt all my innards sloshing around and, for a moment, thought that they might all over the floor. But they didn’t. And all the muscles on my sides that had been holding me together since the second operation cried out “Thank you!” in blissful relaxation.

I had a post-operative consult with the surgeon. He asked me to undress and I noted, bashfully, that I was wearing red bikini underwear. When he saw them, he exclaimed “Ah, Christmas-sy!”

For Christmas, I took the train up to New York and dined again at the Oak Room at the Plaza.

My chemo was supposed to begin shortly after New Years Day. A few days before, the hospital called me and said that no one goes to the hospital between Christmas and New Years unless they absolutely must. They said that if I checked in for the chemo before New Years, I could get a private room. I packed a bag and was there the next day. Bring on the chemo!

At first it was anticlimactic. No side effects except maybe a little fatigue by the end. That, however, could have resulted from being limited for ten days to staying in bed or walking around the floor with my IV pole. People from the office visited during lunch hour. Once two office mates called me and asked me if they could bring me anything. I asked for 4 Size D batteries because my tape player (aka Boom Box) was losing oomph. Another evening, my interior decorator – not a close friend – came by. He got himself a little dinner at the cafeteria and sat in my room for an hour talking with me about this and that. He didn’t have to do that. Funny how we remember little acts of kindness like that.

Lots of friends called from California. Sadly, one of them died of AIDS not much later. I called him frequently and sometimes felt ‘survivor guilt’ as daily I got better and he got worse.

Although I never sank to watching The Love Boat, I did begin watching a lot of daytime TV and nighttime movies. On New Years Eve the nurses and I toasted in 1982 with a bottle of Mums champagne, which we drank from Styrofoam plastic cups.

On the second to last day of my stay (about 8 days into the whole stay), no dinner. In the early morning, the nurse walked in with a tray covered with a handkerchief. She removed it and revealed about six syringes. They ranged from small to cow-tranquilizer size. I asked he what they were and she rattled off some names, including ‘steroids,’ a word I’d never heard before. When she had hooked up the cow-sized syringes to my IV tube, she pushed the contents in with the heel of her hand shaking.

I was given a pitcher and told to drink large amounts of water. When I reached a flow of water in and urine out approximating the Delaware River, they hooked a bag of liquid platinum (cisplatin) onto my IV tube and it began dripping into me. The platinum looked like scotch, the same shiny gold-brown color. It was in, and somewhat out, out in half an hour. About an hour later I began to feel cold in my stomach. I sneezed a few times. Then there were a few dry heaves, but nothing much to vomit up. I think it was the next morning I went home and followed the routine: Sarah out of the kennel, buy groceries to restock the fridge, and back to work the next morning.

A short time later I got a call at the office from the senior chemo doctor. He said that blood tests had failed to detect any cancer in my body. Not sure what exactly he was saying (the news was so good) I thanked him and hung up. I thought for a minute. Then I called him back and asked “What you told me a minute ago – did that sound as good to you as it did to me?” He said “Yes, there were a lot of people here who were very happy.” I said, slowly and softly, “Hot damn.” And began calling fellow workers, my boss, and friends.

Some of my not-best friends were convinced I had AIDS (I’m not sure it was even called that yet). They were elated to find out I had cancer. Great celebrations: “John has cancer. Hooray!!!” One of the many ways this was an hilarious experience.

Anyway, all cancer gone, no hair loss, no weight loss. Maybe I’ll beat it, and with no side effects!

A lady I worked with had had breast cancer a year before and she recommended a shampoo that, she thought, had something to do with her not losing any hair. I began using that shampoo.

About a week later I was washing my hair in the sink and noticed that the sink had not drained. I stuck my hand in the gray water and pulled out a baseball-sized ball of hair. Well, it’s begun, I said to myself. Hair began falling out on my desk, in my food, everywhere. The scalp hair fell like rain, mustache hair not at all, the rest of my hair (chest, legs) slightly. Tight jeans were the style then and my legs were soon hairless. In a few days I was bald on top and thinning everywhere else. I went to a neighborhood hair place, and said “What do I do?” The nice guy there said he’d shave it all off, which he did in five minutes and at no charge. He said to come on back any time, no charge, when the hair came back. Another unexpected act of kindness.

One friend said that, without hair, I looked like a fifteen year old angel. I thought that, with my mustache and wire-rimmed granny glasses, I looked like the mad scientist Albert Dekker in the 1940 sci-fi film Dr. Cyclops.

A few weeks later, and my second long, “blitzkrieg” of chemo began. Same chemicals as before, same second floor of Jefferson’s new wing.

I think it was during this stay in Jefferson that I shared a room with the owner of a grocery store who had stomach cancer. I’ll call him Joe. One day Joe had just lost his appetite and stopped eating. Surgeons opened him up, saw massive stomach cancer (which then was virtually incurable) and sewed him up again. There was nothing they could do except chemo to maybe undo it a bit or slow it. Either they didn’t tell him the prognosis or he didn’t hear it. He was immobile and always terribly thirsty. We had a lot of chats, especially at night, in which he went on and on about how “these doctors” can’t do anything and how thirsty he was.

Frequently he was visited by his wife and kids, other family members (one of whom was the realtor who sold me my house), and employees at his store. They really liked him. They kept encouraging him and he kept telling them how thirsty he was. What struck and saddened me was his complete lack of spiritual life, the absence of any invisible comfort. I wished I could have given him some of mine, wherever it came from. By any standard of usefulness to other people and having people in life who loved him, he was living a better life than I was. In a just world (by my lights) he should have lived and I should have died, but it looked like the opposite was going to happen. He died not long after I walked home. From time to time in the next few years I would pass the realtor in the street, say hello, and ask after the man’s widow. The realtor would tell me a little news and say how good I looked. I wondered how Joe looked. Another case of survivor guilt.

I recall a few things about that stay other than Joe. One day my temperature shot up to 104. One of my chemo docs came by quickly (thank you, Doctor!) and they cut my dosage of bleomycin. I told the doc that I’d be willing to have a 104 temperature if it would improve my chances of survival. But he said ‘no sweat.’ Another day I was walking along the hallway with my IV ball and chain and I met my former secretary and another work colleague, both there to visit relatives who were not doing well. They had not heard I had cancer and were appalled that I was on that floor, which they took as a death sentence.

A few doors down from me was an elderly lady; every morning when I walked past her room I saw her son, middle-aged, spoon-feeding her breakfast. That’s love, I thought.

One night, as I was walking the halls with my ball and chain, I had a chat with a nurse. She told me “We’re not supposed to say this, but your file says ‘Prognosis: Excellent.’ I noted that things didn’t seem so hopeful for Joe. She nodded sadly. Thinking of my own case and the remaining possibility that I would die, I asked her what they do when a patient is incurable and doesn’t want any more chemo. She replied that they put “DNR” on their file, Do Not Resuscitate. Then, cleverly moving one step at a time, I asked – what if I knew I was going to die in a month or so and just didn’t want to linger here watching re-runs on TV and crapping on rubber sheets 4 times a day. Oh, we handle that, too, she said. It’s called The Morphine Drip. It takes about a week. The patients just love it, she said. They just float away. I asked her if that wasn’t like helping someone to commit suicide. She answered that they made very sure that it is the patient who wants it. That seemed an excellent procedure to me.

I never talked with anyone about this, but I decided that if I ever had to depend on other people too much, I would go for the morphine drip. But I was not certain. I was living in a little house whose bedroom windows faced south. When I got home, I could see the southern sky when the sun set and the stars came out at dusk every day. Each day I saw that process, I thought “How beautiful that is. I want to see another of those.” So maybe I would have stuck around until the end.

Thank God, I did not have to worry about keeping my job, paying the bills, or traveling a long way between home and the hospital. I could do this by myself – and with the docs, modern medicine, and God.

One day a young doctor was changing the needle in my arm that the chemicals went through. He had a hard time finding a vein and had been working 18 hours or so. He stopped and sighed in defeat. I said to him, “Don’t worry, take your time.” He quietly thanked me. I thought of one of the last things that Christ said. To another man on a nearby cross, he said “This very day you shall be with me in Paradise.” The point being that no matter how far down you are, you are still able to help other people. That I was able to comfort the young doc showed me that I was not totally useless.

I dreamed one night that my Grandmother, whose memory I cherish, walked into my room, looked at me, said “Johnny, you’re not going to let this slow you down,’ and walked out.

Another day I was walking the halls and passed a young doctor who had played a small role in my first chemo. I said hello; he asked how I was; I said fine; and he allowed as everyone was very pleased at how well I was doing. Happy that my prodigious accomplishments had been recognized, I made some becomingly modest remark. Then the doctor asked me if I had made plans for the third operation.

“The third operation?” I asked in quiet shock. Oh, yes, he said, when we’ve done as much to someone as we’ve done to you, we like to “re-sect” and see how everything is healing. I asked how soon that would be. He mentioned a few doctors I should speak to about scheduling. I told him that I had never heard the names of any of the doctors he just mentioned. He looked at me and asked “You are Mr. McDaniels, aren’t you?” I said “No, I’m Mr. Berresford.” He put his head in his hands and slowly said “I am so sorry.” Great relief and, again, hilarious. Lucky a gurney didn’t go past as we were talking!

When I went home after my second long chemo, I was feeling and showing the effects. I had about half my usual energy; back at home, one morning I just stayed in bed because I didn’t have the strength to go downstairs and make breakfast. Just the thought of doing the dishes exhausted me. The only task I never neglected was taking care of Sarah. My weight bottomed at 125 pounds (ordinarily I’m 170); I was bald as a billiard. Shaved heads were starting to become popular among disaffected youth and some people thought I was a greaser. One store manager who knew me commented on my baldness as I was buying something from him. I told him I had cancer. I remember how he looked at me for a minute. Is this guy going to be alive long enough to pay the bill?

I put on a shirt one morning and noticed that the neck was more than an inch bigger than my neck and that the sleeves were almost down to my fingers. I checked the label; yes, they were from the store where I bought my shirts. Oh My God, I thought, I’m shrinking! Like Grant Williams in the 1957 movie! After I calmed down and did some thinking, I walked to the dry cleaners and found out they had mistakenly given me the shirts of someone who shopped like me but was a bit bigger. Major relief.

Some things were getting better. One cold and windy morning I was walking to work and felt a delicious tingling on my scalp. It was the first shoots of my post-chemo hair coming in and waving back and forth in the wind. I had had straight, light brown hair, by the way, baby fine. My first post-chemo hair came in thick, black and curly; my first beard came in red. Then things returned to normal.

Most people were extremely sympathetic. One work colleague passed me on the street and didn’t recognize me. I didn’t notice him, but later he took the trouble to come to my office and apologize. I remember only 2 instances of less than perfect sensitivity. One work colleague said “Oh, cancer. I knew someone who had that. And he lived two years!” Another person, at a cocktail party for the Human Rights Campaign Fund, asked about my baldness. I told him I had cancer and had just finished chemotherapy and the doctors said that my prognosis was excellent. He replied: “They don’t always tell you the truth, you know.” I nodded sagely.

The remaining chemo was to consist of two more bags of cisplatin; I would check in on a Friday afternoon, get the tray of shots and cisplatin on Saturday morning, be discharged early that evening (if all went well), and have Sunday to rest before going to work on Monday. One of the chemo docs said that if I was in a trial in Pittsburgh, say, I could do all that at a hospital there and be back in court Monday morning.

Each bag of platinum hurt more and took longer to recover from than the previous one. Around the time of the third bag, my chemo doctor told me that the protocol had changed and was now four bags of platinum, so mark another weekend on your calendar in April. I shuddered at the thought of another. And asked if it was really necessary. He said yes. Up to a year ago, he added, the protocol had been twelve bags. I almost fainted at the thought of what that would have done to me. They’d have had to take me home on a stretcher.

I puffed myself up and, in my most pompous tone of voice, I said to the doctor: “I am interested in resuming an entirely normal life at the earliest possible opportunity.” The doctor leaned forward till our noses were almost touching and said quietly to me “No . . . kidding.” I sighed and said “OK, it bring on.”

That last bag was really awful. At the end of it every part of me hurt – my toenails, my left ear lobe, everything hurt. I went to Deux Chiminées and couldn’t finish my meal. I just went home, didn’t think to ask for a doggie bag. But it was over – assuming, of course, that the cancer didn’t come back.

That was the issue. The cancer had gone away, but would it stay away? The months that followed were the loneliest and, in a way, the worst time. Nothing happened. There was no tumor to remove any more, no numbers to bring down, no heroic first getting out of bed or surviving the last chemo. There were no crowds cheering in the stands.

I was supposed to return to normal life. To a large extent I did. I loved being back in my home, with my dog, my friends, my neighborhood, and my job.

Every so often, I went back to the hospital for blood tests to see if the cancer had come back. I’d put down my expensive briefcase with al the important papers inside, take off my Brooks Brothers overcoat and suit, put on a hospital smock, and wait in a room with all the other people waiting for blood tests. It was a humbling experience to remove all my fancy duds and just be another shlub in a smock waiting to be told whether he was going to live or die. We stand naked before God, and in a smock before blood tests.

The test results were always good. At the end of each test, however, as I put on all my fancy exterior and prepared to walk proudly back to work down Broad Street to my lawyer job, I knew that all that was nothing compared to staying alive.

The idea that life was indescribably beautiful, which dawned on me just after my second operation, eventually grew into a belief that there had to be a God. Something this complex and gorgeous could not be the result of random atomic activity. There must be an unmoved mover.

I had been raised a low church Episcopalian. There was nothing to hate or fear there – nothing against gays, fortunately – but there was nothing much to love, either – no passion, no fierce gratitude for the wonder of the world and my life in it. I found an Episcopalian Church near where I lived, St. Mark’s at 17th and Locust. I began attending a short and lightly attended 7:30 AM service on Tuesday mornings. About my third time there, when the priest embraced me during the “exchange of peace,” he whispered in my ear “Give me a cal sometime.” I called him and we made a date for lunch.

When we got together a few days later, I told him my story (he probably guessed it because I still looked pretty awful). I asked him why he had asked me to call him. He said “You looked haunted.” I told him how dumb I felt having ignored God all these years, or taken Him for granted. I brought up my gayness by saying that my life seemed to be falling back into place, and that in fact the previous weekend was the first one I’d had the strength and inclination to go out to the bars. He said that he’d seen me on my way to Equus (a gay bar).

At a pause in the conversation (we’re in the first quarter of 1982), I asked him if he had heard of this new gay disease that was going around New York and San Francisco. He shook his head and said how dreadful it was. I opined that, however bad I was going to be, ultimately it would be good for us. The explosion of rampant promiscuity of recent years, though not without its attractions, led many of us to ignore the emotional and spiritual sides of life. Bringing our sexual conduct closer to that of heteros would make us more tolerable to the hetero majority. And showing us as suffering and caring for each other would present a more sympathetic image of ourselves to mainstream society than the “sex maniacs and whiners” image we’d developed. He nodded and said, “This will be our crucifixion and it will be our resurrection.” I think he was absolutely right, and I feel that my cancer was the same for me.

Of course, with testicular cancer, I worried about the future of my sex life. It would be OK to give up sex forever if the alternative was death. I remember asking the surgeon, at our first meeting, about the future of my sex life. I don’t remember his answer; I suppose that means it was neither optimistic nor pessimistic.

I was absolutely limp in the hospital, for both the surgeries and the chemo. At home after my surgeries, for a while rapid movement of my genital area was too painful because of all the scars and still-healing, re-sewn muscles. But eventually the jungle drums throbbed for human sacrifice, and I joyously discovered that I still got hard (though not as hard as before) and had orgasms. But nothing came out.

I took this up with the surgeon in my last post-operative visit. He said briskly, oh yes, that’s normal. There is a muscle at the base of the penis, which contracts during orgasm, and that’s what makes the sperm come out. In the normal case, and yours was unfortunately normal, he intoned professionally, that muscle is cancerous by the time of the first operation, so I had to take it out. But you are still producing sperm, and there are ways of extracting it from you if you want to have children. And, he added, this muscle has the strange property of growing back eight or ten years later. And it gets rather sticky, he said, because these patients come to me and say “See here, Doc, my wife’s pregnant. Now what’s going on? Is it me, or is she fooling around?”

I laughed and asked him “What do you say to them?” He broke into a big smile and boomed out “I say to them, don’t worry, it’s you. It’s not some [expletive deleted]!’

I went back to The Back Street Baths, a gay sex club a few blocks from where I lived. I wondered if my almost bald head, only one ball, and not squirting would be a problem. The sauna room was a good place to start with small talk. A few guys said “Hi” and I mentioned that I hadn’t been in the place for a few months. “Why,” they asked. As I spun out my tale of woe, I got enormous sympathy. “Oh, my God, you poor guy, welcome back! Is there anything I can do for you?” Another reason to be grateful for cancer.

By Memorial Day my hair was back to crew cut length and my weight was above that of a concentration camp survivor. One weekend I was walking past a sidewalk café on Pine Street and saw one of the young docs who had worked a bit on my chemo. I stopped for a moment and said hello. He looked at me blankly and I said “John Berresford.” He said, “You look like a new person.” I said, “I am, thanks to you” and walked on.

So, how to sum up?

My cancer was the best thing that had ever happened to me. Part of me is a drama and adrenalin junkie, and almost dying of cancer at 31 is fulfillment beyond one’s wildest dreams. God granted my wish, after the Judge bowed to me, for a new challenge. I was grabbed, shaken, and made to realize that life is both fragile and wonderful. Cancer prepared me for another dramatic life-threatening disease about 5 years later, alcoholism. Cancer was the beginning of a spiritual life far deeper than any I had had before. It proved to me that I could survive a major trauma without my biological family. It separated the sheep from the goats among my friends. Who were the sheep and who were the goats surprised me, and often disappointed me. But it’s always better to know the truth. And there were lots of goats.

I remember seeing an interview with a soldier who fought in The Battle of the Bulge towards the end of World War II. When asked what it was like, he said “It was sublime.” I think he meant that it was everything, A to Z, from the best to the worst, the stars above and the mud below. That’s what my cancer was. It’s probably a cliché, but when I was a lot closer to death than I thought I’d be at age 31, I was also more alive than I had been before or have been since.

In closing, a few caveats: all of the foregoing is simply what I remember, “to the best of my recollection.” I am describing what happened more than 30 years ago. I probably misremember a few things. Also, the hospital records were destroyed 25 years after my disease, so I can’t check my memory against them. I have not mentioned the names of any of my doctors lest anything I misremember about our interactions is inaccurate or unfair to them. One thing I will never forget, however: they were all wonderful and I owe them my life.


John Berresford

 

 

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