Category Archives: Adult Children

Love in Black and White

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This weekend Nelson’s cousin Luke invited us to come to his home for the weekend. As we drove the 80 miles there, Nelson asked me to read aloud an email we’d received yesterday. It was written by Kim, who is married to Luke’s brother Andrew…another cousin of Nelson.

Kim said she was representing Andrew with her words, since he couldn’t put his feelings for Nelson into writing. The result is a tribute to the friendship these two cousins have. It’s love in black and white. Nelson and Ann Sophie had read Kim’s email earlier in the day, but as we drove along the highway, Nelson asked me to read it again, out loud. “It was just so good,” he said.

So here it is, written by Andrew’s wife Kim:

I don’t really know Nelson, but I know Nelson-stories and know that if you don’t have a Nelson story, you probably want one. I have had the split-spray from Andrew’s laugh hit me in the face as he recalls the time he and Nelson got stopped by the police late one night in Hawaii.

I have seen cousins cuddled in their beds listening to Luke tell a “Nel and Dod tale,” and I’ve heard Nelson himself recount memories that make you wish they were yours. Like all good story owners, he is easy to listen to.

Andrew loves Nelson. Many times he has told me (sometimes even with a little excitement) that if things ever go south, Nelson is the one he wants to be with. He tells me Nelson has street smarts, common sense, rationality, capability, and then he says, jokingly, “You know, like me.”

This was intriguing to me. Andrew is the most capable person I know. In my eyes he can do anything. I remember once when we were newly married, I tried to hem a pair of curtains that did indeed go south. Andrew replaced the fabric and hemmed them himself. Is he really telling me there is an Andrew 2.0, or did I marry Nelson 2.0?

Once I sized Nelson up at the beach. Andrew and I were getting ready for a bonfire, and Nelson and Ann Sophie were with us. Usually when I get to the beach with company, we grab our chairs and take a seat. Andrew then hauls the wood down, digs the pit, gathers brush, and starts the fire.

This time, as Andrew was bringing the wood down, Nelson immediately began to dig the pit. Once he finished that, he went and hunted sticks for kindling. Then he went back and helped Andrew carry more wood. He didn’t sit down once. Like Andrew, he was a doer.

While he was doing all this, I was telling Ann Sophie, “Listen. If the world ends, Andrew already told me he’s going to find Nelson and the two of them are going to save the world.” I told her that any time I compliment Andrew, he replies, “But have you met Nelson?”

(….conclusion tomorrow)

“Iron sharpens iron, and one man sharpens another.” (Proverbs 27:17)

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)