Jim

After years as a leader in one of the largest global Christian missions, Jim found a new way to follow his calling when a rare form of thyroid cancer interrupted his life.

I was first diagnosed in the Spring of 2010. Everyone says, if you are going to get cancer, thyroid cancer is the one to get because they know how to cure it. It was a call no one wants to get, and it was a lot of information to absorb. But, the doctor who told me had been a friend for 30 years and assured me I would be fine. So, while I was surprised—there was no family history of cancer—and in shock, I wasn’t really freaked out.

I went through the standard treatment. They removed my thyroid and some lymph glands, and did radioactive-iodine ablation to make sure they had gotten rid of all of the thyroid cells. Then I was on the 5-year clock of scans and checkups. Just as I was hitting that 5-year mark, I felt a sharp pain on my left side, like a broken rib. I was headed to a conference so took some ibuprofen and kept going. But at the conference, in an auditorium I couldn’t sit still because of the pain. I also was having increasing difficulty sleeping because of the discomfort. The conference happened to be near my parents, so I went to see their doctor who ordered a CT scan.

Toast

Looking at the scan results, she gave me the first of many “dead man walking” looks. She said, “I’m so sorry, your cancer seems to have returned in a big way. You need to go home and see your medical team immediately.” When I gave a copy of the scan results to a doctor at home the next day, she gave me the same look, the look that says, “You’re toast.”

At the time, I thought, “we beat this once, we will beat it again, what’s the big deal? We’ll just do another ablation.” But as I later learned, it wasn’t that my thyroid cancer had come back. It was a second type of rare cancer – metastatic, radioactive-iodine refractory differentiated thyroid cancer. “How rare”, I asked.  I was told there are fewer than 100 cases of this worldwide. Turns out, it probably grew alongside the first cancer, but remained hidden while I was getting treated because it doesn’t take in the iodine. Once the treatment ended, it had to find another place to live, since there was no thyroid left, so it migrated. Usually it goes to the lungs, and then the brain.

My doctor friend of 30 years, referred me to a local medical oncologist.  I was blessed to discover that she had interned with one of the only teams in the world that studies this cancer, so she knew exactly what she was looking at when she saw the scans. She asked if anyone had shown them to me. I said, “no, not yet, but everyone who looks at them has that same look”. She said, “Your lungs are filled with tumors. We can’t even count them. We stopped at 100 in each lung.”

Incurable But Treatable

It was stage 4 and incurable. Life expectancy was three years if I didn’t get treatment, and unknown if I did. I had to go through another round of diagnostic radioactive iodine at my local hospital before they referred me to the teaching hospital doing clinical trials on this.  At the teaching hospital, the doctor told me they had three bullets – three potential treatments against the disease. But, none of them would eliminate it. The goal was to medically manage the tumors, to prevent new ones from springing up and the existing ones from growing larger. The pain that I had felt on my side was the largest tumor, which was so big it had created a pleurisy.

The first experimental drug was brutal. In addition to the usual symptoms of nausea and vomiting and fatigue, it caused blood clots. I had 3 deep vein thromboses and a pulmonary embolism within a month of being on the medicine. They gave me blood thinner injections so I could continue, but another major side effect is mucus membranes degradation. I had constant mouth sores, and everything just burned. I had to stop after developing a life-threatening anal fissure. The good news was that the drug had worked. My cancer had retreated by about 30% in terms of tumor size and mass and the multiplication of lesions.

Second Bullet

The second bullet was a little easier on the system, and I’ve now been on it for about two years. I visit the doctor regularly for checkup and scans. At one point last spring, a suspious CT scan led to an MRI and I called the practice to say, “what’s up?” and they said they would call me back with the results. Before they did, I got a call saying my beloved father, who had recently been in failing health had died. When my doctor called back an hour later to say that the cancer had metastasized to my brain, I was just floored. I was in shock.  How do you even begin to process two pieces of bad news like that in the space of an hour?

There were six tumors in my brain. They did gamma knife and cyber knife “surgery”, which are really two types of precision brain radiation, and they were able to burn out the tumors without making an incision. It’s been almost a year and they haven’t grown back. But they’ve added a second medication to my daily regimen to increase its effectiveness. It’s a drug that has been used in heart and kidney transplant patients to reduce rejection of the new organ. It helps prevent the cancer from doing an end-run around the primary drug. I go every two months to check for brain lesions, and to assess the tumors in my lungs.

Making Days Count

At four years in, I am now a long term survivor, but we have shot two of the three bullets and the tumors in my lungs are growing. Now we have to determine if we have reached the end of the second drug’s effectiveness. There are four more drugs in the works, but at the moment, there is only one more, so I have to hang in there long enough for the new bullets to prove effective.

As devastating as this diagnosis has been, the first place I go emotionally is to my relationship with God. I believe these things don’t happen randomly. Even though life seems to have spun out of control, God was not surprised and shocked (like I was) at my stage 4 diagnosis, and He was just as in charge of my life as He has always been. Cancer doesn’t define my life. I am who God made me to be and the cancer doesn’t change that. The cancer also won’t determine the length of my life. God determined the date and time of my death long before I was born, not cancer (see Psalm 139:15-16). Right from the beginning God began speaking to my heart reminding me that whether I live or die is up to him, but how I live is up to me. I choose to experience hope and joy and peace in the midst of cancer. I tell myself, “Don’t count the days … make the days count!”

Anger and Disappointment

But that’s not to say that I haven’t had other emotions. Like anger. When I got the second diagnosis and was told the cancer had gone to stage 4 and was incurable, I was disappointed and angry. I ranted for the whole drive home from the hospital. How can they be so sure? What’s going to happen to my wife and my kids? I won’t get to see my grandkids. All those thoughts and emotions ran through me. And, I still get angry. It’s an ongoing issue. It seems anger is my normal response to getting disappointed.  So, I am seeking to replace that disappointment with the hope and peace that comes from knowing Jesus.

I am also angry because it is not the way it is supposed to be. I think we all have a sense deep within that this is not how it is supposed to be.  It’s scary at times.  It’s hollow at times. It can seem pointless and meaningless at times. But, I have found that knowing who God truly is, and being forgiven and rescued by Him from the penalty of my rebellion against Him, has given me peace, meaning, hope, and joy. That is why I never give up in this fight against the cancer. Though this physical body is decaying and dying, my spirit is being renewed with each new day. This present struggle won’t last very long, so I don’t look at the troubles I can see, but I focus on the joy, hope, and peace that I have found in Jesus.  

Worse Than Cancer

I am so grateful and blessed that my wife, Barbara, and my two adult children have been very supportive. Even though we all have times of despair, we’ve never had bad days at the same time. We talked about how my diagnosis doesn’t just affect me, but is really a family affair. As much as I would like it to be, it isn’t just about me. It’s like my situation invited the whole family onto the cancer bus. We all have our separate seats, so even though we are all on the same bus, the view out the window is a little different from each seat. Talking about this as a family has allows us to ask, “What’s the view out your window today?” This allows us to acknowledge, validate, and help process each person’s emotions.

Also, as bad as cancer is, there is something worse. Cancer kills your body, but rebellion against God kills your soul for all eternity. That’s far worse. Thank God that through Jesus’ death and resurrection, He forgave my rebellion against Him, and received me back into a relationship with Him that will last long beyond this life.  Facing death is a scary thing.  But Jesus’ resurrection changes everything for me.  Because He lives, I can face whatever tomorrow brings knowing that my life is not a relentless march to an inevitable dead end, but rather a celebratory parade toward an assured resurrection to life and relationship as they were always meant to be.  And, cancer can’t take that away from me.  It can’t even touch it!

Having Fun

At one point, my wife and I were experiencing treatment fatigue as I had to go yet again for more radiation treatments on my brain. So many appointments, so many new people, so many new names, so much new information. It was becoming our lives and it just wears you out. We knew we had to put some fun back into the experience. So, we decided to create a mosaic with all the names of the people we were meeting. We went to the local hobby store and bought a bunch of scrap booking papers which we cut into 1-inch squares. We put them all in a big box and every time we go to an appointment, we ask the people we meet to pick one and sign it. It’s become an enjoyable way to get to know people as opposed to being poked by strangers all the time.

On average, I’m at the hospital once a week for one thing or another, and every 60 days, the entire team gets together for a major review. I have a big one coming up. Barb and I have given up trying to predict what the outcomes will be. Mostly, it’s been things we never could have imagined. There is no such thing as control—trying to control cancer is like trying to control your car sliding on black ice.  So, we try to just live on what we know, not what we don’t know.

Pointing the Way

I have noticed that other people deal with my cancer in different ways. There are the folks who made it clear from the beginning that they were with me all the way. Others made what I call eulogy visits. They came by to tell me what I meant to them. The third group were the folks who did or said nothing. They simply couldn’t deal with it. That was a surprise to me, but, in dealing with other people’s reactions to my cancer, I am learning to try to hear their hearts, not their words or the lack of them.

I’ve had to slow down. Physically, I can’t do what I used to do—I tire so easily. And mentally, I have a little fuzziness from the drugs and I am not as mentally quick as I used to be. But I try not to focus on that. I am learning to listen to my body, accept a new normal for however long it lasts, and communicate honestly with those who care for me.

Despite my lack of energy, I still try to contribute in ways that I can. I have seen a lot of hopelessness at the hospital, in both doctors and patients. God put me there in the middle of a huge research hospital to be a light in the midst of darkness. I take great joy in finding, or becoming, a friend willing to walk in that darkness with another in need. I try to support other patients I see at the hospital. People are scared. Life can seem pointless and they are not sure what to do with that. So, I walk alongside them through the pain and the sorrow, and point them to the One who can answer their questions and rescue them.

A Prayer

A note from Jim: Thank you for taking the time to read my story.  We probably don’t know one another, and we may never meet but would you allow me to pray for you right now as another friend has prayed for me? “Lord, I don’t know what will give this reader hope right now, but You do. I do know that you love them very much, and I am asking and believing that You will bring life to their heart, and fill it with a confident expectation that in spite of a cancer diagnosis, there is hope. Send Your healing touch wherever it is needed – body, mind, and spirit.  In Jesus Name, Amen.