I Literally Feel Like This Chair

The above picture and caption/title were recently posted by our daughter Amanda on Facebook. This is a very different blog for me. It’s about Amanda’s cancer, and a call I made to her husband Jake. I wrote it hoping the journal ChristianityToday/Pastors will print it for Jake, so I wrote it with that in mind. If you have improvements, please send them my way. Here we go…

I didn’t plan on being a pastor, and parts of it still terrify me. Hospital visits have never been my forte. I’m a strong believer that God made skin to keep stuff in, and I’d just as soon keep it that way.

I fainted at the birth of our first child.

Don’t judge me.

It wasn’t until years into this job that I realized what a privilege it is to be with families in hurting times. Now I’ve been with families through more hard times, healings and deaths than I can count. But I think I’ve still missed much of what folks are going through.

That’s until my daughter got cancer.

Our daughter and family live about 12 hours away, outside of Austin. A couple weeks into her diagnosis I realized that while we had been talking to our daughter Amanda, we had not talked with her husband, Jake. So, I gave him a call.

I should have called sooner.

He had plenty to say, including some suggestions for churches helping others in his situation. I asked him to write it all down. I had some thoughts of my own, so I’ll put his words in italics and my thoughts in normal type.

Jake’s Story

In late July Amanda texted me at work. “You ready for this?” she asked

“Yes?” I replied.

“My mole was Melanoma.”

I paused for a second as I tried to remember what Melanoma was. I couldn’t remember. I quickly googled it… CANCER was the first word I saw.

We talked for bit. I asked her every question I could think of. She had no answers yet. For the moment, the dermatologist knew no more than us. All he knew was that the mole had melanoma (cancer) cells in it. And so, he referred us to a Surgical Oncologist.

Those were two weeks of Hell. With no other facts, melanoma removed all hope for life. We had no idea if it had traveled from her foot to another part of her body, and that lack of information was the fuel that kept our minds racing. We didn’t sleep well, we were short with our kids, we were terrified. Mostly I was planning for the worst possible scenario. Sometimes I dared hope for the best.

After two weeks the medical oncologist informed us that the melanoma-laced mole was cause for concern due to its size. The mole was slightly smaller than a dime, so it didn’t seem like a big deal to me. But it was. The doctor told us she was going to first cut a circle out around the melanoma site, then take a lymph node from Amanda’s upper thigh, and finally place a skin graft on top of the melanoma site to help it heal. Amanda was on board, so we set a date for surgery.

On August 10, 2022, at 7am we were at the hospital prepping for surgery. They took us to a room to get Amanda in a gown and rest prior to surgery. Then they ran us through a number of doctors who mostly asked Amanda a series of questions about the upcoming surgery. Finally, the anesthesiologist came in, gave Amanda some sedatives, and took her back.

There’s not much to do in a hospital room. I played some games on my phone, walked to get lunch, and just waited. Thankfully, the surgery only lasted around three hours. I was thankful that Amanda seemed to be in very little pain. In fact, what she first asked for was her morning coffee (even though it was now 12:30pm). Once we checked out of the hospital, I wondered if she could be hungry. “You know, we are close to a Chipotle.” I said. “YES! THAT! THAT’S WHAT I WANT!”

1: Celebrate plateaus with the family

Here is something I (Dan) learned from a friend. With cancer there is no final healing short of glory. There is always another scan. Even in remission, like so many diseases you have to keep tab on things. So, celebrate the plateaus. It’s a break. It’s good news. Don’t look to the future and become a false prophet. Just sit back and celebrate.

In the hour drive home, we updated everyone we needed to update. I created a messenger group of all the people that knew Amanda was having surgery for melanoma, including our prayer team. By the time we got home, and we were so relieved the surgery was! As Amanda went to lay down and sleep off all the pain killers, I had additional responsibilities.

We have 4 small kids who had no idea what was going on with mom. And they didn’t know why their “JoJo”(Amanda’s mom) was there to help take care of them. So, I let Amanda rest and went to engage with my kids. I was so exhausted. The burden of surgery is a lot–it’s a lot for a whole family. Reading James was helpful, “Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.” James 1:12 ESV

Much has happened since that date. There was cancer in one of the lymph nodes they removed, making this a stage three cancer. Amanda later had a PET scan that came out clear, but the scanziety (a word I picked up from a cancer friend) made for another hellacious week. We’ve been to MD Anderson in Houston and are starting immunotherapy.

Now that we are being “cared for,” instead of “caring for” others, here are some things I thought of that could help if the church just knew of them.

2: Pray. Then pray again.

And pray some more. Let God hear your voice. The Creator of the Universe. The One that holds it all together without tiring. When dealing with cancer it’s helpful to remember that God is the only one that can fully heal anyone.

The church can pray for understanding, peace, blessings, healing, and for God to be glorified. We still want to understand how God is using us in this time. We need daily peace knowing that God is still here with us through it all. We want to be a blessing to others as we walk through cancer. We want Amanda’s body to be cancer free. And we want God to be glorified in it all. We would not have woken up today if it weren’t for His grace.

Additionally, we want the doctors and nurses to fully understand what cancer Amanda has and where it all is. We want them to be at peace with giving the care she needs to help fight it. We want them to know how much of a blessing they are to us. We pray God uses them as a vessel to heal Amanda. And we pray they give God all the glory for it.

“All our perils are nothing, so long as we have prayer.” — Charles Spurgeon

3: Check in. And check in again.

Text, Email, or Facebook Messenger are great ways to ask questions of the family. For us calling was less intrusive after 5 days of being home after surgery. Text and wait. Don’t expect a quick reply. Text the caregiver and not the person directly. Like I mentioned earlier, we had a running messenger group that we continually added people to who wanted to know how Amanda was doing. Get added to that group. You can even create that group.

What do you ask the caregiver? Ask about their kids and how they’re doing. Do they have help, like a family member staying with them? “I’d love to be praying for you, is there a prayer chain chat that we get updated on?” “Do you need help with anything?” “Can we pick up your groceries?” “Can we come clean your house?” “Can we mow your lawn?” (YES, Mowing the lawn would be great!!!!)

Our late Pastor Matt Netzer in his sermon on Hospitality said, “if you don’t say what you need help with, how can we effectively help you?” I didn’t tell anyone that I needed help with mowing the lawn. So what happened? It became overgrown, and we got a warning from the city. Comical, really, but no one knew we needed help in that way. By God’s grace, he sent a kid just starting his lawn business to my house and he cut my lawn.

4: Consider a point person

At our church, and yours may be similar, we have someone who oversees meals for those who need it, and we have small group leaders and pastors who visit. But sometimes if you are the family in need, you don’t want a meal tonight, you just want to be left alone with Chili’s mac and cheese. Or maybe you need the lawn mowed but feel funny asking. Having a “point person” who is a good friend of the family in need to be the go-between can be a real help. They can say things bluntly, like, “kale casseroles give their youngest a lip fungus,” or, “I was there last week and the yard is a mess, do we have someone who can mow it?” and it makes for a bit of a buffer.

5: Food, just no kale casseroles

Sometimes the greatest practical help could be the inevitable Meal Train. I will tell you though, as a giver, it is hard to be on the receiving end. I don’t want anyone to think I’m bashing them or being ungrateful, but sometimes it’s not the best night for a meal from someone else. There are times when I’m stressed, and I just want to eat fat food. (That’s not a typo). I want my fat food!

When we have friends over to our house for dinner, we usually ask something like, “do you like (insert food here)?” And it’s that person’s responsibility to be honest and let us know if they do or not like the food. The meal train could ask what their top 5 foods are. What are their favorite restaurants? Do they have any food allergies in the house? Are the kids really picky? Or simply, “what are your comfort foods?” “Is there something the person is craving?”

I was contacted through Facebook a little while ago from a “point person” who was helping a friend undergoing similar surgery. They were getting people put money on a Grub Hub for them. What a cool idea—then they can eat what and when they want. And you can get folks to sign up through Facebook or email or whatever, which can get more folks involved.

6: Check in on the spouse:

Please remember to check on the spouse. I know I need to talk things through with people. When I process internally, I come to irrational conclusions. Thankfully, my elders and pastors have been in contact with me daily. They ask me questions like: How are you holding up? Are you sleeping? What was yesterday like? Did anything crazy happen?

It’s also wise to ask the patient what they might see the spouse needing to avoid that which is unhealthy. One of Amanda’s major concerns was that I would work long hours to pay all the bills we just accrued. She has also mentioned my horrible sleep schedule! How can I sleep when I have 1,000 scenarios to run through my head?

In short, make sure that the spouse has a solid care team as well. They need the mental fortitude that comes from these relationships to get through cancer.

7: Do a financial check in:

This journey has just started for us, and already we’ve had four thousand dollars in deductibles to meet; fifty dollars per visit co-pays to pay; gas to and from these appointments; medicine copays; and numerous other expenses. Over the last month-and-a half Amanda’s cancer has cost us upwards of $6,000. We in no way could have done that on our own. God provided family and friends that donated to meet these costs. Praise God!

Our next step is immunotherapy, which will entail even more financial hardship, more time off from work, more babysitters, and less time with the family.

Cancer doesn’t just effect one person’s body; it riddles all with whom it is associated. It disrupts life itself. It takes people away from time with their family. It takes away time from work where they make their money to provide for their family. It robs you by being the first thought of the day. Cancer becomes thought that every other thought is countered with or compared to. Unfortunately, that will probably never go away.

What a privilege it is to be with families in hurting times.

Even if you faint in the hospital room.

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