Hard to Understand

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Today we met with Dr. Mansfield, the lead oncologist on Nelson’s case. Nelson will be under his leadership for the duration, and it was this doctor who pushed hard to start chemo and immunotherapy ahead of what others recommended. We saw the reasoning behind this when Dr. Oliver told us he thought Nelson was close to death last week and wouldn’t have made it without the treatment being started.

Dr. Mansfield spent over an hour with us today, much of it trying to simplify the science behind his plan for Nelson. Even with that we had difficulty understanding. For the most part, here’s what he told us.

Nelson has a commonly known type of lung cancer called adenocarcinoma, which is a non-small cell cancer. It’s the kind that’s not necessarily connected with smoking.

We learned how important the process of a biopsy is and why many of the doctors wanted to wait for all of those results before beginning chemo/immuno on him. After nine bits of tissue were taken from Nelson’s lymph node two weeks ago, the lab began performing different tests on them, hoping to find the specific signature mutation on the cancer itself. If they can discover that, they can understand how to attack the cancer.

Once they know the mutation, they can activate Nelson’s immune system with a pill that targets only the cancer cells. In other words, they can train his body to attack his own cancer. This is what Dr. Mansfield is striving for. Targeted immunotherapy is a new science that was unavailable to cancer patients just a few years ago. The treatment is easier on the patient’s body than chemo and produces better results.

Dr. Mansfield simplified the search for a mutation like this. If we lined up 20 different locks but had only one key, we would try the key in each of the locks until we found out which one would open. With targeted immunotherapy there may be far more than just 20 locks, but that’s the goal of a thorough biopsy. If the key we had didn’t open any of the locks, we wouldn’t be able to use our key.

Today’s lab equipment can literally read the DNA strand taken from Nelson’s lymph node. Then laser beams that are too small for the naked eye to see produce gigabytes of information that are read and analyzed by computers. This information is what Dr. Mansfield is working off of.

The first wave of biopsy results have come back negative, meaning no mutation has been found that matches our key, but it’ll be two more weeks before all the information is in. We are still hopeful. The doctor believes there’s still about a 40% chance they’ll find a mutation we can use to unlock what we need in the remaining study. In order for Nelson to qualify for the targeted immunotherapy, his DNA will need to show a match.

The immunotherapy he’s now getting, along with the chemo, is a general boosting of the immune system, but what they really want is the targeted immunology, which is the lock and key that works better than general chemo.

So what does all this new information do for Nelson today? Not much. His first infusion of chemo and immuno therapies happened eight days ago. Their effects are ongoing, and Nelson feels better today than he did before the first IV drips began. His symptoms haven’t changed, but their intensity has. We like to think it’s the infusions that are causing the changes.

He’ll have his next infusion on June 28, and three weeks later, another one. Between those two, he’ll undergo scans to see what kind of progress he’s making. And the doctor will assess his symptoms to make sure things are getting better, not worse.

Meanwhile, his blood is being tested, and today we learned his platelets are low. He’ll have another blood draw on Monday to check this again. His arm and ankles are still swollen and he’s starting to accumulate fluid in his belly. All of this is being produced by the cancer. As the chemo kills those cells, less fluid will be produced. That will be good news when it happens.

From Nelson: Please be praying that my tests come back in that minority 40% and the docs will find the right key and lock combination. These two paths are day-and-night different from each other. And though we wait on the doctors for their expertise and knowledge, we know who is the real Physician and who does the actual healing.

“Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” (Psalm 20:7)

A Dying Man?

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One of the best things about the Mayo Clinic is the constant communication  between doctors, nurses, and other medical personnel. They also communicate faithfully with us. Every patient can set up a portal on their phone that allows them to ask questions, arrange or rearrange appointments, and view test results literally minutes after the tests conclude.

Today’s appointment at the Clinic was the result of a question Ann Sophie had texted to the head oncology doctor. We’ve been concerned about the swelling in Nelson’s left arm/hand, and in both feet/ankles, and thought it was important that a doctor see him and make a judgment.

This afternoon we met with Dr. Oliver and his PA. Because of the frequent back-and-forth between them, both were well aware of the reason for our visit. They were current on everything that had happened to Nelson while he was in the hospital recently and in the days since then.

The three of us asked countless questions, and the bottom line of Nelson’s swollen limbs is that the cancer is causing fluid to build up not just in his lungs but throughout his body. When I asked if it would help to surgically remove the small mass in his neck, the doctor said, “We can’t do that because it’s not just that mass that’s causing trouble. The cancer is all over.”

We knew it had been growing but didn’t know how extensively. Just as we were absorbing that negative news, Dr. Oliver dropped a bomb on us. He said, “When I visited you in the hospital about a week ago, I took one look at you and thought, ‘This young man is dying. He won’t make it to the end of the week’.”

We were speechless. We had had no idea.

Dr. Oliver told us this, we believe, to encourage us, because he also said, “You were a very sick man. And now, a week later, here you are, looking a little better.”

All of us sat still, hearts beating fast, wondering what else he might know that he wasn’t telling us.

Later we talked about whether or not hearing the whole medical truth is good or bad. Would it have been helpful for Dr. Oliver to have come into Nelson’s hospital room telling him he thought he wouldn’t live through the week?

We concluded that it’s best if we don’t know everything the doctors know. They aren’t really in charge anyway.

God is.

As we arrived home this afternoon, we recalled the prayer we’d prayed over Nelson on the day Dr. Olivier judged him to be at the end of his life. Here’s part of our prayer over him that night, personalized just as we prayed it then:

“Let the morning bring Nelson word of your unfailing love, Lord, for he has put his trust in you. Show him the way he should go, because he has entrusted his life to you. Rescue him from this cancer, because he hides himself in you. For your name’s sake, O Lord, preserve his life.”

And God did.

(Psalm 143:8-11)

A Blog by Nelson

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The last month has seemed like a year and also like a week, all at the same time. A month ago, for the first time, I heard the word Cancer used by a  doctor talking about the condition of my body, Stage 4 Lung Cancer. At first it felt like something that would only happen to someone else. Then I realized I had no comprehension of what I’d just been told.

One dominating thing for me throughout the month since then has been PAIN. It’s been nearly more than I could bear, and no meds could get on top of it. When you hit your hand with a hammer and the pain shoots into you, no encouraging word will help at that moment. And up until recently, I’ve had pain that’s been much like that.

It has included an intense and painful cough with severe pain in the bones around my whole rib cage, along with ongoing constipation, nausea, and vomiting. Constant shortness of breath was and is the norm for me. I still get completely out of breath after the slightest exertion.

It took almost an entire week at the hospital with nonstop appointments and continual visits from nurses and doctors to stabilize the medications and their side effects. They needed to get ahead of my pain and then create a treatment program to get me to where I am today. Only since I came home from the hospital two days ago could I stop to take stock of what’s really going on.

Being told that you have “Stage 4 Lung Cancer” is a foreboding diagnosis. It sounds more like a death sentence. And tonight I sit here trying to think it through.

I wonder why having a son and getting a cancer diagnosis happened at the exact same time. After having wished and hoped and prayed for a baby, I wonder why God would do that if I wouldn’t be here to raise him anyway. Will I be alive in a year? In five? How much pain will there be before it’s over? How long will it be before I no longer have to sleep sitting up? Will I ever be able to swim a mile in the open ocean again?

I know none of us can answer these questions, and the Scriptures tell us not to obsess over the future, so living for today is my plan. That’s what I’m determined to do. And it has proven to be a massive challenge and has shaken my whole thought process—as I’m sure it would many of yours.

I want to thank all of you for the love and support you’ve shown us during this month by showering us with gifts, helpful Scriptures, relevant sermons, cards, emails, texts, just all of it. Thanks you. It means so much to us.