Category Archives: Suffering

Planning Ahead

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We’re all agreed it would be nice to have no more emergencies stemming from Nelson’s lung cancer. We’ve had three visits to the ER, two hospital admissions, one ambulance ride, and a variety of crises here at home related to the above—in four weeks.

Having no more would be nice.

But cancer keeps us guessing, and this morning we had yet another beat-down moment that took us by surprise.

We had just loaded the car for a 30 minute ride to a special appointment at a distant post office. We were trying to accomplish Nelson’s chosen task for the day (a #4 on his list of goals) to deliver paper work that would eventually bring an American passport to baby Will. After all, his mama is a citizen of Germany, and his relatives there are anxious to meet him. So our errand was a future-focused undertaking of how life might be after cancer.

Nelson had started the car and was waiting for us in the parking lot. Ann Sophie brought Will out, and I followed, each climbing into our respective car doors. Then Nelson said, “Did you bring an anti-nausea pill?”

Ann Sophie said, “No. Should I go back and get one?”

Nelson flung his car door saying “too late” and bolted for the building entrance, which of course was locked. Ann Sophie realized he was about to vomit and said, “Do it in the bushes!” When he didn’t head that way, she ran ahead with her keys ready for the locked doors.

The two of them disappeared into the building just as Will began to cry in his car seat. I got out and went around to open Will’s door to pick him up, and there we were, a screaming baby and his grandma, pacing around a parking lot near a running car with all four doors wide open and no one inside.

Ten minutes later, out they came, Nelson pinching a paper towel over his bloody nose (due to blood thinners), and Ann Sophie dragging the heavy oxygen machine with its tubing, cannula, and cords–on loan from ever-helpful cousin Luke.

Nelson had made it to the toilet, his mouth filled with saliva, knowing that the retching was about to tear into his mid-section with excruciating pain and then morph into a cardiac event as it always had before. He felt he was about to pass out and asked Ann Sophie to run for the oxygen.

He took several whiffs while kneeling in front of the toilet, and in just a few seconds, the intense nausea magically disappeared. He hadn’t done any retching, there hadn’t been a cardiac event, and he felt just fine.

Ann Sophie dragged the heavy oxygen machine to the car, and while wearing the cannula, Nelson felt good enough to drive. Though we were late to the appointment, our mission was accomplished.

Such is the world of day-to-day cancer. Though we’d like to know what tomorrow will bring, that’s not how it works.

“When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other. Therefore, no one can discover anything about their future.” (Ecclesiastes 7:14)

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)