Monday, April 30, 2018

One Year of Mountain Trails

One year ago I wrote about attending the Redbud Trail Challenge at Ohio Wilderness Boys Camp.

That post sounded cheery, but I didn't share everything. That was the week that Ed began having severe headaches. We should have stayed home, but we had all looked forward to going to Ohio. Ed pumped himself full of pain meds, fought severe fatigue, and drove our family the five hours to camp. God had to have been protecting us.

Ed was planning to run with our children, but on Saturday he woke up with severe headaches and nausea and spent the day in bed. He missed the elation of crossing the finish lines, but also the downpour and incredible mud. By evening he felt well enough to join us at the campfire. My most precious memory of that weekend are of my dad and two brothers laying their hands on Ed and praying for him. Two weeks later Ed was preparing for brain surgery to remove an aggressive tumor.

In January of this year Ed challenged our children to start running again. If he felt well in April, he wanted to go back to the Red Bud Trail Challenge to celebrate one year. We put a chart up in the kitchen and all of us ran/walked 30 miles in January. It was a great way to fight off the winter blahs.

Then in February Ed began to have less energy. We discovered his tumor was growing and he had a second brain surgery in March, but the dream of returning to Ohio in April didn't die.

This past week Ed began his new treatment of a low dose of chemo combined with an new experimental drug. He had two doses of the new drug and both made him very tired and nauseous. But the side affects were also short lived so Friday found us traveling the road to Ohio Wilderness Boys Camp.

My brother Todd had served as camp staff for several years, but he moved home this past year. But that didn't keep a number of my family from deciding to come for the Run. Here is all who made the trip.

And here are the runners (or walkers.)

The day started overcast and cool with a sprinkle of rain. Memories of the horrors of mud slopping last year came to mind. But the sun came out and it was a beautiful race day -not too hot for the runners; not too cold for the watchers.

I love to see the eager anticipation of the 5K runners at the starting line. 

And the look of accomplishment when they cross the finish line.

It was hard to see Ed on the side lines instead of running with his children. Ed is feeling very well most days, but he is only six weeks from brain surgery and he doesn't have the strength for mountain running. 

It is even harder to think of the "what ifs." What if this is his last year? What if this is our last family trip? What if...? 

Sometimes it feels like cancer stole our future. I know none of us have any guarantees of life tomorrow, but most families are not forced to consider every year as possibly their last. There is nothing kind about cancer.

But I can't dwell on what has been stolen or waste time being angry. That would steal the joys of today as well as tomorrow. We do have much to be grateful for. The fact that Ed feels well one year after a gbm diagnosis is a gift that many don't have. 

On Sunday we worshiped with the camp staff in their little church. With all the visitors the singing was marvelous. My brother shared the story of their infant's lengthy hospital stay. Then Ed shared his testimony of the last year.

One of the verses he shared was  3 John 1:2 "Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth." I'm grateful that Ed can say that his soul is in good health. To see Ed fighting up the mountain to enjoy each day without bitterness helps keep me from being discouraged. 

There is a lot of terrible things in this world. Cancer is one of them. 

But we've also found many wonderful gifts from God along this trail. And heart peace is one of the best. 

Sunday, April 22, 2018

A Wedding in the Family

My parents with Neal and Darla
On Saturday the spring sun came out to shine on the wedding of my sister Darla and her groom, Neal.

It has been six years since the last wedding in my family. Enough years to bring a lot of changes in the family, especially in Darla's nieces and nephews, which you can see by looking at the last wedding post. 
 My siblings and I in order of age.
Somehow my siblings have become a family of adults. I'm the oldest of the nine but have become the shortest.

Ed's energy level has been better this week, though he would still say he gets tired quickly. We were so glad he felt great and could enjoy the day. If Darla has as good of marriage as me, she'll be blessed indeed.

The bridal party.

This day was bittersweet. Sweet because getting a brother-in-law as great as Neal is a always a good thing. Difficult because Neal has spent the last few years sharing Christ with an unreached people group in Asia. Next year, Lord willing, he plans to move Darla to China.

Darla is the first of my married siblings to move more than ten miles from my parent's home, so to have family on the opposite side of the world will be an adjustment to our family. But our sacrifice pales in comparison to Christ's sacrifice for us.

I've been challenged by Neal and Darla's commitment to God, and I'm truly happy that they found someone who shares their vision for serving God will all their heart.

Congratulations, Neal and Darla. God go with you.

Thursday, April 19, 2018

Keto To-Go

(Scroll down to the end for an update on Ed's treatment, if you wish.)

Since June Ed has been on a strict ketogenic diet in hopes of controlling his cancer. Obviously it hasn't stopped his cancer, but his neuro-oncologist encouraged him to keep on the diet. Ed has felt so well during chemo, and maybe the diet is helping.

His keto diet is very strict with very high fat, moderate protein, and extremely low carbs. The diet could be considered "whole foods" since it is nearly impossible to find any processed food that fits his needs. In other words, I make nearly everything that goes in his mouth. Traveling is difficult because he can't just grab a sandwich. I find it a challenge to come up with a variety of meals that are easy to transport and can be eaten cold. And, of course, they must taste good.

This week Ed and I spent two days on the road. I'll share what I packed for our meals.

We started out the morning doing deliveries in several cities for Ed's job. Ed had a snack of salted almonds mid-morning.

At lunch we had chicken-celery salad. Celery is a very low-carb vegetable which combines well with chicken, mayo, and olive oil to make a delicious keto meal.

In the afternoon Ed ate some mascerpone-stuffed mini peppers. Mascerpone cheese is similar to cream cheese but has no carbs. Cream cheese is a cheaper option for those not on extremely low-carb diets. Ed eats these peppers for a snack almost daily.

By this time we had arrived at the hospital where Ed had more tests and bloodwork. Afterwards we had some time before his scheduled MRI.

We drove past all the malls and big city entertainment and found a great state park. So good to walk in the spring sunshine after sitting most of the day.

On the dock we ate ham salad on a bed of fresh spinach with some green olives.

For dessert Ed had a fat bomb. There are many recipes for fat bombs online. This one is a mixture of cream cheese, butter, almond flour, stevia, and sugar-free chocolate chips. Yum.

The next morning I grabbed a quick bite at the hotel continental breakfast, but I knew there would be nothing suitable for Ed (besides coffee). At home I had mixed up a concoction of my homemade yogurt, coconut oil, red raspberries, and whipping cream. Ed seemed to enjoy it so I'll put it on the menu again.

Between Ed's morning doctor appointments I pulled out some deviled eggs for Ed. I was afraid lunch would get late and I wanted to give him a substantial snack. I was glad I did. Our next appointment ended up taking far longer than expected. It was after three when we finally made it back to the van and I could get lunch for Ed.

This lunch (or whatever you call a meal eaten at 3:00) was my favorite meal yet. And it is one that doesn't even need refrigeration. I peeled and sliced an avocado into two bowls and then popped open a can of salmon (Sam's Club brand) drained it and layered the salmon on top of the avocado. A dab of Chipotle mayo and we had a delicious lunch. (Eaten too fast to be photographed.)

On the way home at the gas station Ed had a keto lemon-poppy seed muffin with a Sparkling Ice.

So that is how we did two days of keto meals from an ice chest. We were able to stay on Ed's diet and eat yummy food on a very small food budget.

In the past weeks we've had lots of discussions, doctor appointments, and prayer to decide on Ed's next treatment. Ed has decided to take part in a clinical trial testing a new medication. Ed will be taking a small dose of chemotherapy along with this new drug. This new drug is an inhibitor, with the goal of blocking some of the enzymes that the cancer needs for growth.

Ed plans to begin this new treatment next Monday, April 23. Will you pray with us that this treatment will be effective and he will have few side affects?

Monday, April 16, 2018

Bookmarks: Picture Books on Trains

All aboard? Get ready for a train adventure. My children love the sight and sounds of huge locomotives. This collection of books will delight and teach about a bygone era of transportation.

The Stourbridge Lion:America's First Locomotive by Karl Zimmermann, illustrated by Steven Walker
Some thought it looked funny and others thought it looked scary, but this little steam locomotive became America's first steam engine to run on rails in 1829.

Locomotive, written and illustrated by Brian Floca
You are invited to join a family traveling west on the newly completed transcontinental railroad. Listen to the lilt of the lines and watch the landscape flit by with realistic drawings in one of my all-time favorite children's books.

Aboard a Steam Locomotive, written and illustrated by Huck Scarry
Every train enthusiast will pore over the detailed pen-and-ink drawings of this book. The author visited steam trains around the world to piece together an account of the daily workings of a steam locomotive.

Steam, Smoke, and Steel: Back in Time with Trains, written and illustrated by Patrick O'Brien
Travel back through time and watch the developments in train engines through the years. Warm paintings follow the love of generations of train engineers.

Mailing May by Michael O. Tunnell, illustrated by Ted Rand
A true story of a young girl who longed to visit her grandmother. When her parents did not have money for a train ticket, they came up with a creative solution. Rand's illustrations always add charm.

Kate Shelley: Bound for Legend by Robert D. San Souci, illustrated by Max Ginsburg
When a terrible storm took out the railroad bridge in Iowa, fifteen-year-old Kate knew she had to go warn the next train. A true story of courage told with heart-warming details and rich paintings.

Train to Somewhere by Eve Bunting illustrated by Ronald Himler
Marianne, heading west on the Orphan Train, is certain she will find her mother. But when her hopes are dashed, will she be willing to find new hope? An endearing story from 1876.

Crossing by Philip Booth, illustrated by Bagram Ibatoulline
Few words are included in this book for young children, but the paintings that will enthrall any child, especially one who loves trains.

Underground Train by Mary Quattlebaum, illustrated by Cat Bowman Smith

A small girl travels on the DC metro train to visit her grandmother. Bright illustrations show the activities of the city. 

The children and I also learned a lot by watching the BBC series Full Steam Ahead on YouTube where historians and reenactors share about England's trains.

This post contains affiliate links.

Friday, April 13, 2018


Confession: I am a People Pleaser.

I once thought I didn't worry about what people thought of me. I sometimes feared I leaned too far the other direction, valuing my independence and stating what I thought without concern of offending others.

I was homeschooled in the mid-80's - an unheard of educational option, and I was accustomed to being unusual. When I was nineteen I spent a couple months in a southern city and walked to a huge church on Sundays where I was the only woman wearing a head covering. I didn't mind being in unfamiliar situations and sticking out. That was a good trait when I started dating Ed and ended up in a Mennonite community where I knew nearly no one.

But maybe in the passing years I've become more concerned with others' opinions.

I've struggled with blogging the past months. I can think of topics to write about, but become paralyzed with wondering what readers will think. If I write about cancer am I being too self-focused? I never wanted to be a navel gazer. My goal for my blog has always been to be helpful to my readers. Endless litany of our cancer journey feels like gagging on yesterday's meatloaf.

And then there is the worry that someone will disagree with the medical choices we make. Cancer treatment is a much debated topic. I enjoy a good face-to-face discussion with friends, but I want this blog to be a happy place not a heated debate.

Maybe I should just share one of the many book lists I've compiled. Or chat about homeschooling. Or pictures of planting my garden. But when my husband has a terminal disease it is okay to write about something so mundane as pictures books? If I write on other topics, does it look like I'm ignoring the elephant in the room?

It has been a year since I shared a recipe, which once was the majority of my posts. I have new bread recipes I could share, but I don't feel like writing about bread when Ed can't even eat my bread anymore. But writing about the keto food I'm making for Ed will only interest very few of my readers.

So my mind goes in circles. It is ridiculous. Pathetic. Bordering on bizarre. I'm way over thinking. You all are very kind and, really, what does it matter what a random reader thinks about what I write?I can't please everyone. I can't even figure out how to write to please myself.

It is not a bad thing to evaluate my words and decide whether they are edifying. I need to delete words that I know will offend. But the Bible says that the fear of man brings a snare. I think I've been caught in it the past months.

So now you know, when I'm quiet it may be that I'm busy. It may be that I don't feel like writing. It may be that I don't know how to write what I'm thinking. But if I share a booklist or a recipe, it doesn't mean that cancer isn't heavy on my heart, it just means I want to talk about something else.

And now I think that this whole post is so self-centered that I should delete the whole thing. But a friend asked once for me to share what it means to live with cancer. I suppose this whole convoluted post is one answer, a view into the mind of one confused writer.

So the short answer (if you've managed to read this far) since I do want to be helpful and have a point to this post...If you have a friend who is going through a rough place, and you think they should act in a certain way, or grieve in a certain way, or write blog posts in a certain way - and they don't. Be patient with them.

We might talk about planting green beans just to have something normal in our upside-down life. We might talk about green beans hoping that you'll ask about cancer. We might talk about green beans because we think you want to talk about green beans and we are trying to please you. We might not know what we want to talk (or write) about.

But we are very grateful for your friendship on our mixed-ups days. Thank you.

Monday, April 9, 2018


Sometimes I want to halt time.

This weekend was one of those times. Life felt so precious that I don't want to move on.

(Pillow racing)

My brother is home for a visit from his work in the Middle East. My whole family hung out at my parent's house for most of the weekend.

 (Jelly bean and toothpick designers.)

(Marshmallow chick catapult)

We spent hours talking, sharing stories, playing games, eating amazing food, and singing.

(My parents)

Ed still gets tired quickly, but he has recovered from surgery enough to enjoy a full weekend like this. A special answer to prayer was that my little nephew Parker is strong enough to join us. He is now free of his feeding tube.

With all the events of the past year, time together as a family has become more precious.

Last night, Ed and I discussed how we may never have a weekend like this again. With Ed's health and my siblings' globe-trotting, it is possible that my family will never again have a long weekend together.

I'm the oldest of nine children. Over the years I've worried about my five brothers and three sisters. How awful if they would choose to walk away from God. What if they chose spouses that weren't committed to following God? When I was about nineteen years old I was horrified to think that the choices I made could affect my younger siblings. I probably had an inflated sense of my own importance, but it didn't hurt me to evaluate my music, activities, and reading material with the thought that I might be influencing my family.

But today my siblings are inspiring me by their choices. They challenge me to put others first and sacrifice personal comfort. They demonstrate the joy of investing in the kingdom of God and laying up treasure in heaven.

I don't know what the future holds for my siblings. I pray that they will continue to share the love of Christ whether here in Pennsylvania, in a refugee tent in the desert, or in remote mountain villages halfway around the world.

Monday, April 2, 2018

The Strife is O'er

We are nearing the one year mark of Ed's brain cancer diagnosis. Last Easter (when we watched love in action) we never dreamed Ed was seriously sick. Looking back, we recognize warning signals. Ed was having more frequent headaches and fatigue in early spring which we blamed on a busy schedule but now know was signals of his tumor.

With Ed's diagnosis came membership into a new community.

We would have never chosen to be part of the family of cancer fighters. Over the past year I've been in contact with many others who were forced on this journey. I read their latest Caring Bridge update, stalk them on Facebook, and communicate by email. I connect with mothers, wives, and daughters of cancer patients. I frequently talk on the phone with two women whose husbands have brain cancer. We share tears and laughter and enjoy the kinship of a shared path.

But the reality of building friendships in the cancer community is the frequent news of death. Every month I get the hard email or phone call with news that life on earth is over for someone whose journey I was following. Even when I've never met the person, connections have been made and I still hurt. Intense physical suffering may have ended, but that doesn't change the grief of family and friends.

But I've also watched the Resurrection power give hope to both the ill and those left behind.

Without hope we are miserable and defeated. Christ's resurrection gives not just the ability to cope, but a victory that can defeat the grave. It doesn't wipe away all tears. (That will come in the future.) It doesn't fill the empty chair. But I've talked to new widows and grieving mothers and watched Resurrection hope beat back despair and allow moments of joy.

I love many of the Resurrection hymns, but "The Strife is O'er" has been one of my long-time favorites. I like to listen/sing it every Easter and was glad the chorister chose to lead it in church on Sunday.

I share this for all of you who have faced sorrow this past year and need hope for the future.

The Strife is O'er
by Francis Pott
#256 in Hymns of the Church

Alleluia! Alleluia! Alleluia!

The strife is o'er, the battle done;
The victory of life is won;
The song of triumph has begun. Alleluia!

The pow'rs of death have done their worst,
But Christ their legions hath dispersed;
Let shout of holy joy outburst. Alleluia!

The three sad days are quickly sped;
He rises glorious from the dead;
All glory to our risen Head! Alleluia!

He closed the yawning gates of hell;
The bars from heav'n's high portals fell;
Let hymns of praise His triumphs tell! Alleluia!

Lord, by the stripes that wounded Thee,
From death's dread sting Thy servants free,
That we may live and sing to Thee. Alleluia!