Introduction

My wife Vanna and I are parents to two terrific boys, Nikitas and Victor. We live in the suburbs of Philadelphia, where I also teach. I’m a high school English teacher and a writer. I also paint and coach Little League.

Going to the Emergency Room

When I went to the ER, I appeared normal, but when I described what happened to me, I could tell from their reaction that something serious was going on. In a matter of hours, I had blood draws and X-rays taken. I waited in a room very patiently and watched the entire Phillies game on the TV.

Around midnight, I went to the front desk and asked the attending doctor if she was as surprised as I was that we still hadn’t heard any results. She looked at me with tender eyes and said she would see me in a minute.

She came into my room, sat next to me, held a pretty fuzzy X-ray image up, and pointed to what looked like an hourglass. She pointed to the narrowing and said, “We don’t know what this is, but it could be fatal.” Those were the first words that I heard from a doctor about whatever was going on inside of me.

What the Doctors Could See From the Scans

There was some blockage or obstruction in my superior vena cava, the main vein that descends to the heart and the last and most crucial vessel that brings blood back to the heart. In retrospect, that would explain why all of a sudden, I had backed up blood in my head and neck. At some point, the blood managed to get through the superior vena cava, so my blood flow returned to normal.

After four days, a cardiac surgeon proposed to open up my chest completely to get to the vein, but we were still left with a catch-22. The interventional radiologist said, “Even if I had your superior vena cava in the palm of my hand and my best needle in my other, I would not dare try to get a piece out of the wall of your vein to do a biopsy.” We were stuck. I wasn’t having dramatic inflamed symptoms but I was still uncomfortable.

On day four, a cardiovascular surgeon came in and said, “It may be some idiopathic thing that we can’t explain. There are medical mysteries. We’re going to send you home without a diagnosis. If you have another flare-up, if you continue to have worsening symptoms, we’ll have you come back in a month and we’ll do more imaging.”

I left and I was not confident because you feel the sensations in your own body. I was hopeful, but my gut said something was happening inside of me.

Three or four doctors were looking at the gigantic triptych of images that showed my superior vena cava and the narrowing that came nearly closed and then opened again. They shook their heads and said, “We don’t know what this is.” The cardiovascular surgeon came in and somberly said, “I’m sorry. We’ve tried to do everything and there’s nothing left that we can do.” We all knew what that meant.

My father, who’s a doctor and is always inquisitive and never at a loss for hope, was quiet. That gives you some indication of all the conversations, research, and investigations that had gone on for the last 10 days had come to this moment and we accepted it.

I hugged my wife. My parents went over to the window and I went over and hugged them. Very strangely, I was more equipped to handle the news than anybody. I had been living with that first thought on the night I went to the ER and was told this could be fatal. We didn’t know what this was, so I had been preparing for this possibility.

When I hugged my dad, he said, “I’m sorry, son,” and I said, “I’m sorry, dad,” and the next thing that he said was, “Tomorrow, more research.” That was a profoundly hopeful, illogical moment, but it shows you the balance of this man of science who, even after all of that, was still determined that there might be something, but he was also my dad, going through this with me and all of us.

Six hours or so later, a man I had never seen before walked in. He’s a heart and lung transplant surgeon at UPenn. He said, “I know you don’t need a heart or lung transplant, but I’ve got an idea. I propose that I open you up and take out your entire superior vena cava and replace it with a graft that I’m going to craft out of this material that I’ve been using to patch hearts and lungs. I’ll make a vein for you and attach it at both ends. I think I can do it.”

My wife and I were alone with him, stunned and giddy, happy and amazed, and slightly skeptical. My wife Vanna ran to the hallway, grabbed my parents, brought them back in, and said, “Repeat what you just said.”

We listened to him describe the surgery that he had planned. He had been using an organic material made out of pig intestine. He’d been using it to patch hearts and lungs, but he thought he could make a cylinder out of it and make a vein that would replace my superior vena cava. He said he would do this. I said, “So there’s still hope?” And he said, “There’s always hope.”

Doctors Couldn’t Believe It Was Cancer

My oncologist, one of the great lymphoma doctors, said he had never seen anything like it. In a month, I started chemotherapy and that’s when I met my oncologist.

That was the first time I ever heard about cancer or lymphoma. But I had a graft in my chest that needed three months to heal. That was the plan.

My surgeon said, “I don’t know what chemotherapy is going to do to Jim’s graft made out of pig intestine and we’re certainly not going to stick a port in his chest into his superior vena cava. Hopefully, the chemo will go well into a vein in his arm.”

The obstruction that was originally in my superior vena cava was a lymphoma tumor. Despite everybody’s certainty that lymphoma doesn’t present that way, a lymphoma tumor was growing inside the wall of the vein of my superior vena cava.

I tolerated some great discomfort but in time, I trusted that the body would do its magic and heal itself, and other tributaries would form as these guys described to me. Presumably, that’s what happened because I’ve had scans since and I still have this dramatic narrowing. Even though you can’t see in any of these images that other collateral veins have formed, everybody thinks that the only scientific explanation is that’s what happened.

I am sure I am one of the very rare cases where the cancer and the chemotherapy were always secondary to the healing of the surgery.

When we got to the fourth round or so, I got tested and it appeared that there was no growth. Eventually, by the sixth round, I was in remission. There was no lymphoma showing up on the PET scans.

At the time, I couldn’t wait to get back to normal. There was only one marking period left in the year. I teach English and writing to seniors and wanted to be in this atmosphere of dynamic conversation, kids, and vitality.

When I came back at the beginning of April, my colleagues were thinking, “Are you crazy? Take the year off at this point and see you in September.” But I couldn’t have been happier to be back. My hair was growing back. I was still bald, but it felt great to be back.

What came from my experience as the son of a doctor was confidence in having conversations with my doctors, the expectation that they were listening to me, and that they wanted to hear my story because that’s the kind of doctor my dad was.

My dad was a family doctor and he made sure to make eye contact to hear the patient’s story and to be there emotionally not just clinically. Again, it’s easy for me to say to a patient who might be going through these things who didn’t have the good fortune that I had with all these other lucky things that I had going for me.

Words of Advice

Keep the faith. Stay hopeful. Be your best self-advocate because you never know and the doctors don’t always know either. They need to hear your story.