Lung Cancer Survivor

Don’t Ever Give Up

John Gavin, diagnosed with Stage IV lung cancer at 57, refused to give up. His loyal friends and family members, an extraordinary medical team and an innovative immunotherapy drug helped him turn a near-death sentence into a life once again worth living.

 

This all started with terrific pains in my leg. I became weaker and soon had to start using a cane and eventually a walker. I saw specialist after specialist, but no one could tell me what was wrong. I was getting progressively worse. Ten months later, as I was rolling myself into bed — which was how I had to do it — I heard a crunch, and my pelvis started to hurt. I knew it was time to stop messing around, and I called 911.

The pain was so intense that I was essentially put into a coma. My local hospital felt they couldn’t help me, so they transferred me to a larger hospital in a nearby city. It was there I heard my diagnosis. I had Stage IV lung cancer. The doctor asked me if I knew what that meant. I assumed it meant I wasn’t long for this world, and he agreed. He said there wasn’t anything he could do for me. It was all very matter-of-fact. At 57, I went into a rehab facility with no plans for a cure.

The lung cancer had metastasized to my bones and basically turned my pelvis into a spongy material. It had also reached my brain. Other than some radiation therapy to help with the pain, I wasn’t receiving treatment for the cancer. It was depressing.

I called my college roommate, who lives in another part of the country, and he showed up one day to visit. He’s always been one of my favorite people. He’s just one of those people who makes you feel more alive when you’re around him. It was during his visit that I realized what I’d be saying goodbye to. It hit me that I wasn’t ready to be done yet and, all of a sudden, I got very emotional. I told him there was no hope for me, and I just needed to make peace with what was coming. He told me, “I don’t think you need peace. I think you need a new hospital.” So we found one.

He, my twin brother and I met with an oncology team at a university teaching hospital not far away. The oncologist’s resume was impressive. She’d been at all the top hospitals you’d hope your oncologist would have experience from. But even more than that, she made me feel like I mattered right from the start. She was an exceptional listener. During that first meeting, the three of us peppered her and her team with questions, and they patiently answered all of them. I knew I was in good hands.

A tumor had popped up on my collarbone, and my lymph nodes were getting very swollen. These were the first visible signs of the cancer, and that was scary. My oncologist was concerned that I hadn’t received any treatment for the actual cancer, so she started me on chemotherapy, mostly just to get something going. The tumors seemed to be growing daily despite the treatment so, after just two rounds, we stopped it. She asked me to come back for an appointment in three weeks. By then, she hoped to have a solution.

When I returned three weeks later, we discussed an immunotherapy drug. I began treatment and within two weeks, the tumors started to shrink. After three more weeks, they were almost gone. It stunned all of us. I think my doctors were just as happy about my reaction to the drug as I was. I feel like they consider it a success when they can extend someone’s life for six or nine months, so this was extraordinary. The plan is to stay on the drug for two years with infusions every three weeks. I’m also getting palliative care every one to two months for the pain, and I go for scans every 12 weeks.

Right now, fatigue is the biggest side effect. It is a known side effect from the drug, but mine seems to be extreme, so my doctors are investigating additional sources for it. I also have some issues with my short-term memory due to the cancer metastasizing to my brain.

I’m looking forward to getting on my feet again. Walking is awkward, and it’s almost like I’ve forgotten how to do it right. I was on my back for a long time. I’m getting ready to start physical therapy so that should help. I’ve talked to other survivors who say that exercise is good for fatigue, so I’m looking forward to seeing if it helps. You have to be alive to feel tired, so I’m not complaining.

It amazes me when I think of how many people are involved in a successful medical intervention. I owe an awful lot to many people. From my oncologist and her physician’s assistant to the nurses who did the infusions and the friends who came to visit, a lot of human effort went into making me feel better. I lived with my brother and sister-in-law for about six months. She made me breakfast, lunch and dinner every day, and they took me to and from the hospital for appointments.

I have friends that come to visit me weekly, and I value those times. I think it would have been helpful to go to in-person support groups to hear how other people were dealing with lung cancer, but it wasn’t easy for me to get there. I do find it worthwhile to participate in some of the online discussions through groups like the American Lung Association.

I also do a great deal of research online. You have to be discerning about where you find your research and not get caught up in the miracle cures you read about. I read about clinical trials, from the financial perspective and in medical journals. I don’t understand about 90 percent of the medical journals, but I get something out of the 10 percent I do understand.

Currently, the primary tumors and the mets are not quite eliminated, but they have been stable or shrinking for several months. I was able to stop taking pain medication recently, and my doctors are optimistic.

I don’t know if I should call it providence or luck or good timing, but I realize how lucky I am to have responded to the treatment. If I’d been diagnosed earlier, I might not have been eligible for the treatment. My advice to others is to hang in there. You don’t have to assume you have a death sentence. Get out there and learn about some of the amazing responses that people are having. Seek out access to these leading-edge treatments. There is some really hopeful stuff in the pipeline, and it’s worth a try.

 

 

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