The second part of guest author Anya Humphrey’s three-part post. A year after her husband died, her son was diagnosed with testicular cancer. This is his story.
by Anya Humphrey
A year after Fred died, our son Ted, who had moved home for a month in the process of trying to get his life together, told me he needed to see the doctor; his right testicle was the size of his fist. He had noticed that it was beginning to swell around the time of his dad’s death, but he didn’t want to worry anyone so he didn’t mention it.
The medical world moved swiftly and within a week he had surgery. We had already been warned that it was almost certainly cancer, but that the cure rate for testicular cancer was perhaps the highest of all. If it’s caught early. Ted had a dozen metastases. I nearly vomited going through the doors of the cancer centre.
When they think they can cure you, they give you as much chemo as your body can tolerate without killing you. But that means dreadful side effects, and Ted got them all. He had four rounds of it, each a month long, and it was brutal. At least a compassionate drug program provided an extremely expensive medication that allowed him to keep a little food down. Mostly Ted coped by sleeping and watching movies. Needless to say, it was lucky that he was living at home. Then we had a month of waiting before a scan to see whether the mets had disappeared.
They hadn’t. Testicular cancer travels through the lymph system, so they know where to look. Teratomas are the remnants of metastatic tumours, altered by the chemo into something different, which can grow again and may not be responsive to the same chemo any more. He had them between his kidney and spine, between his trachea and aorta, and in his neck. His very kind oncologist didn’t want to put Ted through the agony of the surgeries to remove these, and chose to stall, saying we would wait to see if they grew. But when Ted was finally referred to a highly specialized surgeon, it transpired that the oncologist was not up to date with current practice, so the teratomas had grown, making the surgery even more difficult. The surgeon was furious.
The first surgery required the displacement of most of Ted’s organs in order to reach the teratomas by the spine, and the list of possible consequences was terrifying. But it was successful. On a followup visit the surgeon was shocked to hear that the oncologist was stalling on thoracic surgery as well. He took over Ted’s case and referred him to another remarkable specialist who had the expertise to do it. This surgery involved entering Ted’s chest through his back ribs. The surgeon said that afterward Ted would discover new words for pain. Ultimately I never heard those words, just screams.
While he was still in hospital, they got yet another surgeon to remove the teratoma in his neck. I lost count of the number of tubes going in and out of his body. The recovery was slow and painful. A pain specialist was added to his team of doctors.
Over the three years Ted was in treatment there were all the inevitable setbacks, plus unforeseen ones like shingles. There never seemed to be a time when we could really take a break. Then one night Ted thought he might be having a heart attack. The emergency ward thought not, but suspected a blood clot in his lung, or bone metastases, or other new ones. More scans, daily Heparin shots, extra appointments. Then we got the news that there was still something in his chest: maybe leftover surgical cement; maybe a teratoma that had been missed; or a new one; or two. Different radiologists had different opinions. Ted’s surgeon was very reluctant. He said he wouldn’t go into his chest again unless he was sure Ted would die if he didn’t.
So we were in limbo, a familiar place. One evening we had a good conversation about that, and when I went to bed I asked Ted if he’d like to join me for a croissant and latte for breakfast. He usually stayed up late and slept in, but I thought it would be nice to eat together. He said yes, to wake him when I got up.
The next morning I knocked on his door and got no answer. That was nothing unusual since he slept deeply once he went to bed. But I had said I would wake him so I opened the door and saw him slumped over at his computer, his torso resting on his thighs, his head face-down by his knees. He reminded me of a baby that had fallen asleep in his oatmeal, so like Ted to just pass out like that. I put my hand on his back and noticed his arm hanging down, bluish, cold. I tried to wake him up and nothing happened at all.
I lunged for the phone, dialed 911. A woman answered and I think I said I needed help, that it looked like my son was dead. I remember her telling me over and over to lay him down and try to clear his airway. Perhaps I neglected to tell her that he was 6’7” and weighed 250 pounds. I wanted to go get my neighbor to help, but she said no, I had to try. I started to pull on his chair, which had casters, and it flew back as his body fell off, landing flat on his back, as though following instructions. There was blood on his face and on the floor, but not much. I think maybe he had hit his nose when he fell forward. He looked asleep.
I felt in his mouth, wet and cold, and couldn’t do anything else. I ran downstairs to unlock the door for the firemen, who would be coming soon. Our sweet volunteer firefighters, Fred’s colleagues, who had taken Ted under their wing. When I saw their grim faces coming up the stairs, it hit me that something awful was happening. A VSA (vital signs absent) call. The kind of call they used to refer to as a “Freddie” because my serene Buddhist husband was the only one who could calmly do CPR on a corpse. I was in my nightgown and housecoat, with the phone in my hand. The 911 operator had hung up when I said they were there. Ted’s room was so crowded they could hardly fit. I threw on some clothes and ran back. Someone said I needed to go somewhere and I couldn’t figure out where until he ushered me downstairs and I understood that they didn’t want me watching.
An ambulance came and took over for the firefighters. An EMT said they would continue CPR and take Ted to the hospital. “But he’s dead, isn’t he?” I said. The woman looked disarmed and nodded. I told them to leave him where he was.
The police came too, a requirement in an unexpected death. They asked if I wanted them to call victim services and I said yes because I needed something. Then they asked if I wanted to call a neighbor, and my mind struggled to figure out who. All my wonderful neighbours would have come, but I couldn’t think. I called our oldest friends in a nearby town who simply said, “We’ll be right over.” Julia, our female firefighter sat with me, rubbing my back, preventing me from getting up at every question. And then her mom came, the moms of other young firemen, neighbours and friends as the word got out. A police officer sat in his patrol car across the street for many hours, waiting for the coroner to come. He told everyone that we weren’t allowed in Ted’s room till after he had been examined there.
I called Claire and Gideon, who were able to come by late afternoon, and other relatives far away. People made coffee and brought food, the traditional kindness in a small town. My brain started to do the same thing it did after Fred’s death, but I recognized it and told people what was happening as I lay down on the couch. Somebody called my grief counsellor and brought me the phone, and I didn’t fall apart the same way.
The coroner came, read through the orderly records I had kept of Ted’s history, and said there would be an autopsy. He told me Ted must have had a peaceful death.
When the men came to take his body to the morgue, there were only two of them. The sound of them struggling to get his body down the stairs remains for me the creepy soundtrack of a horror film. They left him in a dark blue Naugahyde body bag on the dining room floor while they got a gurney. I unzipped the bag and kissed my son goodbye.
Maybe it sounds like I don’t have any feelings about all this. But that’s the way trauma is: everything gets frozen, sometimes in shattered fragments, like Humpty Dumpty. There are feelings all right. But I don’t have words for them, just screams.
As caregiver to both her husband and son through their deaths from cancer, Anya Humphrey witnessed a medical system populated by wonderful people whose good intentions were not enough. So she became a Patient and Family Advisor to the healthcare system. Her focus is on palliative and end of life care, with the goal of providing the patient and family perspective on what matters, how to provide that, and how to determine if it’s happening.