Sometimes you’re plunged unexpectedly with little preparation into unfamiliar territory, and you find yourself asking how you’re going to make it through. Here’s my story of surviving Stage IV metastatic melanoma:
In September of 2002 at age 44, I felt a small lump under my arm. My family doctor believed it was a cyst and perhaps due to some sort of infection. He confidently announced during two different appointments, “Whatever it is, it is not cancer.” But the lump continued to grow, and eventually he sent me to a surgeon for a biopsy on December 23, 2002. On Christmas Day 2002, the surgeon called with the lab results from the biopsy. I had Stage III metastatic melanoma. Since I had no skin lesion, this was a surprise to the doctors and surely contributed to the delay in diagnosis. The cancer had bypassed my skin’s surface and traveled directly to my lymph nodes. As the parents of two teenagers, my wife Terri and I were shaken that I had cancer, but the diagnosis was doubly hard because my dad was battling Stage IV melanoma at the time and his condition was rapidly deteriorating. My surgeon scheduled another surgery on January 12, 2003 to remove the entire mass from under my arm. By then it had grown to 8″ x 6″ x 4″. We had hope for a few days that the cancer was gone, but a later scan showed a quarter-sized lesion in my stomach. So I had another surgery to remove a third of my stomach. On the morning I was to be released from the hospital, my wife walked into my room and reported my dad had just died from his melanoma. In my condition, I was not able to make the trip from Dallas to Pittsburgh to attend my father’s funeral. Grief and helplessness enveloped me. To find comfort I turned to the story of Job in the Bible. In the midst of his losses, Job cursed the day of his birth. I found a strange consolation in cursing the distance from Dallas to Pittsburgh.
TESTING OF FAITH
As a pastor for 13 years, all my sermons about the testing of our faith seemed to taunt me. A grief observed is one thing – a grief experienced quite another and my trial was just beginning. After recovery from the stomach surgery, my doctor suggested a harsh treatment called Interleukin-2. I was amazed when his first choice was to send away me to Pittsburgh, PA to the University of Pittsburgh Medical Center. He said their interleukin and melanoma research, under Dr John Kirkwood and Dr Sanjiv Agarwala, was well established and a world class program. I noted the irony of being sent to Pittsburgh, just days after missing my dad’s funeral, but I of course jumped at the opportunity to be with my Pittsburgh family. Still, I admit God’s timing of these events was a struggle for me to handle, but He knows what He is doing.
The theory behind high dose Interleukin-2 (IL-2) is to supercharge the immune system and knock out the cancer cells which have been evading detection. The side effects of IL-2 are similar to a very bad flu. The treatments require hospitalization because of dangerous side effects on the renal system – the kidneys. I am not going to pretend – the treatments were extremely tough on me. I really leaned on the support of my Pittsburgh family. With 7 brothers and sisters living near Pittsburgh there was almost always someone by my side, even through the night, because the treatments were around the clock. My church back in Dallas was incredibly supportive and caring throughout the entire trial. They were fervently praying for total recovery. I was also able to reconnect with many old friends from high school and college. I felt humbled and grateful for this expression of the love of God. The Interleukin did not knock out my cancer. In fact, the cancer continued to spread rapidly, like a windblown fire. The multitude of prayers had not worked either. Not yet.
DAYS TO LIVE
Once melanoma metastasizes or spreads past the skin, it can be one of the fastest spreading and deadliest cancers. It lodged in my pancreas in two spots. One of those tumors grew to 2 inches by 6 inches. Other sites were above and below my collarbone, on my kidney, lung, rib, several lymph nodes in my abdomen, a chain of tumors along my celiac trunk (an artery that carries blood to the stomach area) and also a patch in the lymph nodes of my pelvis. It spread from the front of my pelvis, back through the pelvis and into my ischium bone (sitting bone) and eventually fractured it. I remember the day when I tried to climb a step and felt something crack. Before I left Pittsburgh though, I was hospitalized again for four more days with pancreatitis, an inflammation of the pancreas that prevents digestion of solid food. The tumors were taking over my pancreas from both sides. Since I could not break down food, I stopped eating altogether and began to lose weight very rapidly, ultimately losing 65 pounds. I don’t want to be too melodramatic – I admit I had a few pounds to spare but I was very thin. Upon returning to Dallas, I was hospitalized again for severe abdominal pain – more pancreatitis. My doctor gave me “days to live”. He asked the nurses to “keep me comfortable.” I began preparing my funeral from my hospital bed.
Then, despite my doctor’s concern that chemotherapy might prove fatal, I decided to try a cocktail of chemo from MD Anderson Hospital in Houston. Melanoma is known to be very resistant to chemo but after my first treatment my symptoms improved immediately. Just under my skin by my collarbone there were two masses the size of large marbles. Both began to shrink. The second round of chemo was brutal as far as side effects. I vomited or had diarrhea virtually every 15 minutes for two days after the treatment. But the chemo was really kicking in. The masses by my collar bone disappeared altogether. Then a PET scan showed significant shrinkage of internal tumors! Because of the progress, my doctor gave me 9 more months to live in July of 2003. Yet the large tumor on my pancreas was not responding at all. So I underwent shaped-beam or guided beam radiation from a “Novalis” machine which Lance Armstrong had arranged to be donated to the nearby Richardson Regional Hospital. There were only 6 Novalis machines in the country. Melanoma is usually unresponsive to radiation, but the Novalis uses high tech mapping and guided precision to target a tumor, shaping the radiation field to the contours of internal masses. The radiation levels can be increased high enough to knock out melanoma, yet reducing impact to surrounding tissue. The radiation was successful, killing the tumor in five treatments that each lasted only five minutes. Immediately, my appetite returned and I began gaining weight and strength. After the third round of chemo in August of 2003, I had another PET scan which was completely normal with “no evidence of disease” (NED)! My oncologist is still amazed and calls this an absolute miracle. He had never seen a “complete” response with such an advanced case of Stage IV (stage four) metastatic melanoma. Watch my surgeon call my recovery miraculous at our Stronghold Ministry Banquet in 2012. God had clearly answered our prayers and all glory goes to Him.
MAKING SENSE OF IT ALL
I have to be honest, there were moments along the way I actually prayed for death. It would have been a whole lot easier to just die and go be with the Lord! I really started fighting in prayer when I decided I would rather stay on to be with my wife, finish raising our kids, and continue to fish for souls for eternity (Philippians 1:21-16). The “light and momentary” struggles of this world pale in comparison to the glory of enjoying the Lord forever and bringing others to Christ (2 Corinthians 4:17). Yet heaven could wait. (BTW – find out how you can know for sure if you will go to heaven: Read our “The Two Ways to Get to Heaven.“)
My story is not a profile in courage and it is certainly not a “tough guy beats cancer” story. It is about the Lord’s desire and ability to hold onto me even when I was losing my grip. This is why I call my story, “My stronghold.” If it was all up to me to produce stability in the depths of the pain, the fog of drugs, emotional stress fractures and concerns for my family, I never would have made it.
Psalm 59:16-17 sums it up well for me, “But as for me, I shall sing of Your strength; Yes, I shall joyfully sing of Your lovingkindness in the morning, For You have been my stronghold and a refuge in the day of my distress. O my strength, I will sing praises to You; For God is my stronghold, the God who shows me lovingkindness.” (NASB (C))
For those who fought with me and for me, I can’t thank you enough. Let me know when it is my turn to fight for you. This story is not complete without proclaiming what an incredible nurse and companion my wife, Terri, was to me throughout the whole experience. Caretakers have a different but traumatic path of their own.
In November of 2008, after 18 years of pastoring a church, we launched a non-profit organization, Stronghold Ministry, to come alongside of cancer patients and those in crisis to help encourage and comfort them. This ministry continues on today. If you’re fighting cancer, please write and tell us your story. We want to be in your corner! -Joe Fornear
*For more details and the rest of the story, read Joe’s book, My Stronghold, A Pastor’s Battle with Cancer and Doubts.
*Watch Joe and Terri’s story on the 700 Club.
Joe has been totally cancer free since August 13, 2003!