I officially found out I had cancer 139 days ago. That was my first appointment with an oncologist. My PCP had told me it was cancer 2 days earlier. And from that day until 92 days ago, the news was bad and only got worse:
· May 14: “It’s cancer. It is spreading aggressively. And it is really bad.”
· May 16: “I’ve seen this 10,000 times. You have stage 4 non-small-cell lung cancer, and the options are very few because it has spread to both lungs and the mediastinum area.” (a wrong diagnosis, btw)
· May 22: “We thought it was only in the chest, but we realize it has spread to your liver.”
· May 24: “It’s not lung cancer. It’s melanoma, which is a blood-born cancer that spreads rapidly. You need an MRI.”
· June 10: “The cancer has spread to your brain. You have 4 brain tumors, all in different areas.”
After a doctor change, and after processing all of the bad news, a new oncologist confirmed that I had stage 4 metastatic melanoma. There was no primary in my skin – it is non-cutaneous. But that didn’t matter because the cancer was so advanced that they would not treat any skin lesions anyway. My options were few. There was no viable chemotherapy. Surgery was out because there is too much cancer. They would try immunotherapy, but he was not sure how to mix the cocktail of drugs they wanted to combine. He would go to the Tumor Board and a committee would suggest what they thought was best.
He shared a few encouraging anecdotes about people who have done well (e.g. Jimmy Carter – I was sick about hearing the Jimmy Carter story). But the real data was that 60% of people given this treatment do not respond at all. Of the 40% who respond positively, some reach NED (no evidence of disease), but most live with the cancer and a life expectancy of around 24 months. That number goes down significantly if the cancer has spread to the brain. Mine had. They would try SRS radiation on those tumors, and that could make a difference. But everything is so new that there is really no data to show what my chances were.
That was 92 days ago.
Yesterday I had an MRI and met with my neurosurgeon. He confirmed that I have NO brain tumors. NO BRAIN TUMORS. If you follow my blog then you read that last week my CT scan showed that my other tumors have either gone or been drastically reduced – 60% in my lungs (those are the hard tumors), 80% in my mediastinum and the nodes around my chest (those are the most dangerous ones), and the liver tumors are 100% gone.
Two days ago, I went in for my 4th infusion, which had already been delayed by 2 weeks. My infusions have been tough. They have created a drug-induced auto-immune problem similar to lupus. But lupus is better than cancer, and lots of people suffer. Many suffer more than me. This is my new normal, and I can deal with it. So I was ready for the next infusion.
When I got there, the doctor, to my utter surprise, told me that he decided not to give me any more infusions for now. He said that my immune system is working on its own stronger than he ever expected it to, and that I was overwhelming the cancer without needing further assistance from the drugs. Wow!
I pushed back. I told him that if protocol was 4 treatments with the combined drugs, and I had only had 3, and my last treatment was 5 weeks ago, that I was ready and willing to take and endure the final treatment. “Let’s get this done.” His response was that he didn’t think I needed it - didn’t think it would help me do better than I am already doing. He then began telling me stories about patients who stopped treatment, but killed the cancer without medical assistance, and had been cancer-free for years. He said, “I fully expect you to be one of those stories. You are doing great without the treatment. Let’s stop for now, keep watch, and be willing to start again if we need to. But we may not need to. It would not surprise me if you were not mostly cancer-free now, or certainly within the next few weeks.”
I may not be cancer-free…yet. But I am close, and I am off medicine. These past two weeks have been good news and better news. A nice turnaround from May and June when every report was worse than the last. My last treatment was August 27. I have been treatment-free since then. In reality, I only had 6 weeks’ worth of treatments, and my doc says I may not need any more. Given the amount of cancer and the spread of it, and the fact that it was aggressively growing when we found it, this is a miracle!
92 days ago, faced with a grim prognosis, I was thinking about which car we should sell, since Vic wouldn’t need two, and how I should start selling my fly-fishing stuff because Victoria might just give it away not realizing the value of it after I die. I actually thought that I might not need to get another haircut. I decided not to buy new t-shirts and socks. Today, I am wondering when I should plan to make a trip to Sierra-Leone, and what I am going to say when I see 800 CCHF friends at our conference in March, and about business trips and speaking engagements early next year. I am planning to buy new socks and a nice pair of pants that will last me a few years!
Emotionally, it is hard to describe what I am feeling. I have intense periods of relief and gratefulness. Sometimes those are full of energy. I walk down the street or across the office with both hands raised in the air. I want to shout. I stop and talk to strangers and tell them what is going on. Waiters who dare ask, “how are you doing?”, (who really meant, “do you need more water”), get the full story (along with an extravagant tip)! There is a euphoria in this sense of relief – God is doing a powerful miraculous thing in me, defeating death again, answering prayer, delivering me and my family, extending my life! I am not worried. I am not living in the tension of surviving and dying at the same time. I am not bracing myself for more bad news. The work that God is doing in me is being confirmed in every medical test they give me. What relief!
But then, in that same sense of relief, there are periods where I just can’t talk. I don’t want to relate – to anyone. In public, with my wife or a friend…I’ll go quiet. I don’t want dialogue. I don’t want to think. I am just overwhelmed. I often want to be completely alone. I don’t want to share about this. I can’t make sense of it. I am still grateful, and still so aware of God’s attention to me. But I can’t speak about it. It seems too holy. I seem too small, too myopic. It is all so un-processed. I don’t understand. That is the real truth. I don’t understand. I am not talking about not understanding my feelings. I don’t understand any of this.
I am showered by the unprovoked love of God. He is prodigal in his love and goodness towards me. It seems so … I should shut up. I shouldn’t talk about this. I don’t understand His love for me. I don’t understand His mercy and His goodness. I have a doctrinal belief that explains it. It seems trite and silly to me now. I am a fool. A loved fool, but a fool nonetheless. Don’t correct me, or you will just show yourself as much a fool as I am. You don’t have any explanation either. God’s mercy towards me is mystery, rich, deep, beautiful, unexplained, desperately needed and hoped for, but when it comes is completely other, altogether unexpected. To say it is “more” is an absurd understatement. It is personal and intimate, and a secret between God and me that I can’t explain. One that I feel lost in – secure and lost in a milieu that I was made for and do not understand. It suits me, but I don’t suit it. Here I am. Here He is. I can’t escape. I don’t want to. I am a fool.
Try analyzing that.
When I got home from the doctor’s office I just wanted to talk to someone – tell them my good news. My friend, Tony, who lives down the street, was home and out working on his truck. So I trotted down to tell Tony. He speaks pretty good English. Tony is not religious, but he and his wife have been praying for me. He was genuinely excited, and ran in the house to get his wife, who speaks no English. She came out and gave me a big hug. She struggled to find broken English to ask, “Victoria be happy now?” “Yes, very happy! Muy bien! Gracias for asking about Victoria.” As I turned to go back home, she said something to her husband, and Tony stopped me.
“My wife wants me to tell you…(long pause)… that my mother died last week. She also had the cancer…for a long time, very sick, and she died.”
“Tony, I am so sorry. Where did your mother live.”
“She live in Mexico where I come from. My father is with her.”
“Did you get a chance to go…”
“No, no. I cannot go. It would be trouble for me to get back home if I go. I would lose my family and my business here. I want to go, but I cannot go and come back. So I stay with my wife and my kids here. It is better. I call my Papa, and I send the money. I miss my mama. It is sad for us.”
In all my joy for what is happening to me, I cry thinking about Tony and his mother. I cry thinking of my friend, Cindy, for whom I want everything that I am experiencing. I think about a brother I have never met, Dan, whose wife reads my blog. Dan is going through chemo this week. I think about Brita and Becci and Dawn and half a dozen other friends who are waiting and hoping and praying for a miracle, too; and who are faithful to praise God and enjoy Him whether He answers them like He is answering me or not.
I don’t understand. I can only receive what is given me.
I want to steward this well. I want to steward this process. I want to steward the changes God is making in my character through all this. I want to steward the time and opportunities that I will receive because of this gift.
The reality is that this is the truth for all of us. It has been the truth for me for all of my life. I am only more aware of it now than before. I don’t want to lose that awareness. It is almost too emotionally heavy to bear, but I hope I can.
Please keep praying for me. Thank you.