Category Archives: Dying

Another one from Nelson…

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Ann Sophie and I (Nelson) read the Bible, 1 chapter every day and have done so in chronological order since we got married almost 5 years ago now. We’re on our second run though it. 

The funny thing is: if you do this and don’t skip around, your circumstances line up with the reading in an uncanny way. For example, right when I received my Cancer diagnosis, we started the book of Job. 

If you know the book of Job at all, the majority of it is consumed by a series of monologues coming from Job’s friends who visit him, all taking on a little different flavor. Some say he’s being punished for sin, others say he should do something or needs to realize something to make the judgement of God stop. Job’s own wife even delivers a shocking message of her own!

Either way, they all have a message for Job. 

I mentioned this to Ann Sophie and how similar it is to what we have going here (if you put me in Job’s position). Many people have come and gone since we moved to Rochester and everyone brings a message or leaves us with a feeling. Some come to help set up furniture (Thank you!!!) Some bring a word of encouragement or help take care of little Will. Some have known me all my life, and call almost wanting to say goodbye. I mean stage 4 lung cancer, right?

But the one common reaction almost everyone has though is this: Surprise. 

“Wow! I’m shocked by your optimism.”

“It’s amazing, you and Ann Sophie have such a positive vibe going here.”

“You sound much better than I expected.”

“You look better than I thought you would.”

“I’m so encouraged by our talk.”

“What a blessing is has been to see you, talk to you in person, hear your voice, etc…”

And I guess what I would say is that even though my diagnosis is grim on paper and maybe most folks who get what I have don’t last too long, I have just one approach at this point.

God gave me a beautiful little family. He also gave me a fairly good composition. The docs have given me good odds and told me about treatments we are going to try that my body is likely to respond well to. So many people have committed to us in prayer. I can hardly believe all the cards and letters and gifts we’ve been given. I’m even excited to be an encouragement to others who have what I have once we’re out of the woods at some point in the future. I have NO PLAN to say goodbye to anyone or get in that mode at all. Some might say I’m in denial. Maybe, But one thing I know is this: the war is won and lost on the battlefield of the mind and that’s the only battle I can actually control. And that battle actually controls the outcome.

That being said… and for me and my house, we are living every day like it’s the last and every day like it’s the first of many more to come. We’re committed to the God who can heal me and we are walking that out day-by-day. That’s my proclamation and the only way forward for us. There’s no plan B. I have the most dynamic, optimistic, beautiful woman on the planet and a 15 week old baby boy who need me to stay alive for as long as possible and alive is what I’m going to stay!

From Nelson: My Five Daily Goals

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Every day I try to meet five goals by the end of that day. These aren’t goals for healthy people as much as for someone like me who feels his life is on hold. If I have lots of time without something productive to accomplish, my mind quickly drifts to the worst case scenario.

Having these goals, then, is a way for me to live within my new reality but It’s dangerous to drift through each day thinking there’s not much I can do to change things and that everything is out from under my control. But setting these five goals has helped me see that such defeatist thinking is wrong. There are lots of things I can do. I even met these goals while in the hospital last week.

Here they are:

  1. I will complete a spiritual discipline twice each day, whether by myself or with someone else.

This might be our daily Bible reading as a couple that we do first thing every morning. It might be a prayer time, whether alone or with others. It could be journaling with an eye toward laying the words out before God.

This morning, for example, when my thoughts were straying in the wrong direction, I decided to write a gratitude inventory. It got the praises going inside of me and set a good tone for the day. It helped me look at the glass half full instead of half empty.

  1. I will perform an act of physical exercise twice each day.

This used to mean swimming a mile in the open ocean, jogging several miles, or working hard on a physically challenging project. Now it means a slow walk around the block or accompanying Ann Sophie on a short shopping trip.

Running or swimming is out of the question for me now, because I don’t have enough breath. But even in the hospital, I could gently walk down the hall and back.

  1. I will accomplish something every day toward my effort of waiting.

Living with lung cancer includes lots of waiting—waiting for appointments, test results, prescriptions, doctor-opinions, changes in medication. I’m also waiting to see what future, if any, I will have. At the moment, my life is in limbo. It could go either way. And so I try to accomplish something positive while I wait.

I think of it as doing the possible so God can do the impossible. For example, I can eat a healthy meal, rest intentionally, take my pills on time, attend an appointment.

  1. I will work to complete a physical task that will carry with it a feeling of accomplishment.

This might be doing the dishes, tidying a messy table, organizing a file, getting an oil change on the car. It’s something that can be checked off a to-do list in one shot, start to finish, something I’ve been wanting to do.

  1. I will intentionally do something with my family members and enjoy them in the process.

So much of what God wants us to do in life has to do with people. To miss that by plowing through a day while gritting my teeth just to make it is tragic. None of us know how much time we have with any one person. We need to appreciate people while we have them.

Our days in this apartment include lots of examples of this. We do almost everything together, like eating three meals together, listening to sermons together, attending medical appointments together, praying together, and sharing time with little Will. We wouldn’t have to do it like that, but we’re choosing to.

If I succeed in meeting these five goals each day, I can go to sleep at night knowing I’ve done what I can do, and the rest is up to God.

“Take every thought captive to the obedience of Christ.” (2 Corinthians 10:5)

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)