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

Confused?

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

Choices

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!




Tuesday, March 27, 2018

Father, In Thy Mysterious Presence

I was trying not to get my hopes too high, but I was wishing we'd be able to go to church together as a family last Sunday. The day before Ed was so uncomfortable sitting that he didn't expect to go to church, but on Sunday he felt good enough to try.


All ready for church.

Ed still has a lot of pain in his hip, but it seems to be improving slowly. Yesterday (Monday) he went to work all day. He would be quick to say that the fact that he was bodily present at work doesn't mean he worked all day. He is under restrictions on how much he can lift for six weeks after surgery and still gets tired quickly and needs to rest. But today marks two weeks since his brain surgery. I think the fact that he feels well enough to want to work is amazing.

A friend recently gave us the cd "Faith To Carry On" by The King Family. So many of the songs on this recording have been meaningful to us these weeks.

One of the songs "Father, In Thy Mysterious Presence" Ed knew, but it was unfamiliar to me. I love how this prayer song admits my need for God's power in my life.

Father, In Thy Mysterious Presence
by Samuel Johnson
#136 in Hymns of the Church

Father, in Thy mysterious presence kneeling,
Fain would our souls feel all Thy kindling love;
For we are weak, and need some deep revealing
Of trust and strength and calmness from above.

Lord, we have wandered forth through doubt and sorrow,
And Thou hast made each step an onward one.
And we will ever trust each unknown morrow,
Thou wilt sustain us till its work is done.

Now, Father, now in Thy dear presence kneeling,
Our spirits yearn to feel Thy kindling love.
Now make us strong, we need Thy deep revealing
Of trust and strength and calmness from above.

You can listen to the song on YouTube. (If reading by email, click over on the blog to listen.)



There are many other wonderful songs on the "Faith To Carry On" cd. I could never choose a favorite. I shared this hymn because it is old enough I didn't have to worry about copyright infringement. You can purchase this cd at Scroll Publishing or listen to other songs from the cd on YouTube.

Thursday, March 22, 2018

Snowy Recuperation


March has sent us some crazy weather. I enjoy snow, but a snow storm on the first day of spring would not be my first choice. On Monday we had all enjoyed a walk outside in the balmy sunshine and I found myself starting to look forward to gardening again.

But Tuesday and Wednesday found us watching snowflakes. I couldn't help but think it was perfect timing. How better to recuperate from surgery then to sit on the recliner in a warm house watching the snow? I loved that all of us were together at home with no stress of going anywhere. And now the sun is coming out and promises to melt the snow and return us to spring.

I know that no one envies me for having a sick husband, but there are a few advantages. I've probably spent far more hours with my husband the last weeks than some women do in a year. I cherish these days.



Ed has spent the week resting, reading, playing games with the children, and helping me with homeschooling. He feels great - at least in his head. All the sitting this past week must have pinched a nerve in his hip or something. Now he can't walk without pain.


Hopefully that too will soon start feeling better. Yesterday afternoon he and our boys worked for a while in the shop on some router jobs. Today Ed decided to go to work for a few hours. He is restricted in how much he can lift, but hopefully moving around more will bring him some relief to his hip.

Thanks so much for all your prayers for our family.

Monday, March 19, 2018

Book Review: Why God Calls Us to Dangerous Places



In the Land of Blue Burqas by Kate McCord was probably the best book I read last year. (My review.) I was eager to read McCord's book, Why God Calls Us To Dangerous Places,because some people I love are sharing Christ in physically violent locations.

Kate McCord (not her real name but a protective pseudonym) shares insights from her years of living in Afghanistan.  She also shares interviews from other individuals and their families who lived in dangerous places. McCord did not minimize the difficulties of living in such situations, but by sharing her story and the stories of others, she demonstrated the rewards of following Christ's example of leaving the comfort and security of home to share God's love.

I didn't expect the book to be so personally inspiring. I have no plans to get on a plane and travel to a place where speaking Christ's name could mean death. But I was reminded that God loves us so much that He was willing to sacrifice His Son so we could have a relationship with Him.

Since I was reading this book in the hospital, I found all sorts of connections to our cancer journey (though I don't pretend to face the trials of a persecuted believer). It is often in the difficult experiences that God shows us more clearly His tender love for His children. And it makes me more eager to share His love with others.

And, to me, that was the point of Why God Calls Us to Dangerous Places. It is knowing that God loves all people and wanting desperately to share His love with all the people of the world. This is a short book and a quick read, but each chapter contains thoughtful study questions to help the reader gain personal insight.

Whether God is calling you to serve in a dangerous place, or someone you love is considering moving to a dangerous place, or you are called enter into a messy relationship with a neighbor that needs Christ - this book may give you a new perspective.

This post contains affiliate links.

Saturday, March 17, 2018

Home and Hearth


Last night Ed was discharged from the hospital and he didn't waste any time walking out.

A night of sleep uninterrupted with pokes and prods from the nurses was just what the doctor ordered.


This morning our children joined us.

Ed has a lot of strength to regain. Brain surgery kicked him hard, but it is wonderful to recuperate by his own fire.

God has been so good. Thanks for your prayers.

Thursday, March 15, 2018

Let God Be Magnified

Leaving ICU.

Yesterday morning (Wednesday) less than 24 hours after surgery, Ed was able to walk slowly down the hall and was booted out of ICU. ICU had taken great care of Ed, but he didn't mind being detached from the wires and tubes and be sent back to 7th floor. 


My lovely accommodations in the family lodge.

After two nights of very little sleep both Ed and I were exhausted. Ed was given a quiet room with no roommate last night though the nurses made sure he didn't sleep too long. I collapsed into bed and didn't hear or move for seven hours. I felt like a new person this morning.


Beautiful stitching.

When I saw Ed's incision I wondered why Ed was having no pain. His nurse has to convince him to take an occasional Tylenol as a precaution. He is practicing walking the hall and taking the stairs with naps in between. This morning (Thursday) he had the drain in his incision removed. They will watch the incision for another 24 hours, but if his recovery continues this well we'll be home before I consume all the snacks in my bag.



My parents brought our children to visit this afternoon. A friend whose husband had brain surgery here in January sent along a wonderful lunch to share. 



The children had so much fun in the playroom that my four-year-old didn't want to leave. She asked if she could come again. I'm trying not to think about the fact that she might have that opportunity.

If you know me in real life you know that I like conversations, but in this huge hospital I feel like a country mouse prepared to dart to the nearest hole. But I've been trying to pretend I'm bolder than I feel and initiate conversations this week. 

Because this is a research hospital every patient has a story to share. Many come here with serious medical conditions to volunteer to take part in experimental research. I have found that most are eager to chat. 



Yesterday Ed had another MRI scheduled for 3:00, but because of an earlier opening they asked him to come at 1:00 instead. I considered waiting for Ed in his room since the nurse was pushing him in the wheelchair, but I decided to walk down with Ed and sit in the MRI waiting room for a change of scenery. A man and his wife came and sat beside me. I knew instantly that I had seen them before. 

When researching immunotherapy I had watched an interview of this man. Before I could lose my courage I introduced myself. He and his wife were back for a follow-up visit after three years of being cancer free. Soon the lady seated on the other side of me joined our conversation. She is involved in an immunotherapy program as well, taking part in the same protocol that Ed is considering. 

Only God could have arranged that the four of us were sitting in the waiting room at the same moment. I was able to ask specific questions about their treatment, but even better, these were believers who shared their testimony of God's faithfulness in their lives. Though they are viewed as part of medical breakthroughs, both were quick to glorify God for their healing.

I've been looking up verses on joy this week and liked Psalm 70. The plea for help turns into praise to God.
"Make haste, O God, to deliver me; make haste to help me, O LORD...Let all those that seek Thee rejoice and be glad in Thee: and let such as love Thy salvation say continually, Let God be magnified. But I am poor and needy: make haste unto me, O God: Thou art my help and my deliverer; O LORD, make no tarrying." (Psalm 70:1,4-5)
I don't have to be strong and capable; I have a capable God. A God who can orchestrate details as insignificant as MRI appointments and a wife who needs encouragement. A God whose name can be magnified from hospital beds.

Tuesday, March 13, 2018

More Than Can Be Numbered

We are thanking God for his blessing of presence and peace this week. I don't know how anyone can walk through the doors of a hospital and sign consent forms for brain surgery without knowing that God is with us. 

So many of you have assured us of you prayers. Thank you.

Backtracking a few days...

On Saturday Ed had a severe headache and nausea. This was his first bad headache since his surgery last May. We were able to get the pain under control by afternoon. This was confirmation that the scheduled surgery on Tuesday had been the right decision. 

Ed felt great Sunday and we were able to enjoy the last day of our church's revival services. These services had made our week extra busy, but the messages from God's Word made the effort of attending worthwhile. 


On Monday Ed again felt good and was able to drive to the hospital. The day was filled with tests and appointments. Ed said we must have talked to half the doctors in the hospital. We are so grateful for compassionate, knowledgeable staff members. In the evening we took Scrabble out to the lovely lobby area which was strangely quiet at that time of day. Ed proved he can still beat me in Scrabble even with a brain tumor - but only by one point.


Ed was assigned to a double room which meant there was no room for me to spend the night here with him. I dreaded finding a hotel for the night and had worried about it far too much. I felt like I was given a huge wrapped present when I found out that there was an opening for me at the family lodge. I had reserved a room at the lodge for later in the week, but had been told it was filled to capacity for the first part of the week. The lodge is a beautiful building - imagine dark paneling, inlaid wood flooring, and stuffed chairs pulled up to a gas fireplace. It is located right across the street, only a five-minute walk from Ed's room. What a gift.

But beautiful surroundings can't turn off a brain. I'm afraid I didn't get many hours of sleep despite the comfy bed.

Ed's surgery was scheduled for 8:00 this morning. Ed had requested to have an inter-operative MRI. After the surgeon removed the tumor they did an MRI right in the operating room to check for any remaining tumor spots. The surgeon felt that the surgery went well. 

The moment of first seeing Ed when he is waking up from anesthesia is scary. Will he remember me? Will he be able to move his left side? What if the surgery leaves him permanently disabled? What a relief to walk into his room, pick up his left hand, feel him squeeze my fingers, and know that he is okay. 

Recovery from brain surgery is a long road. Battling an aggressive brain cancer is an even harder journey. We can't see over the next hill or around the next bend. But we are so grateful for those of you who are walking with us by prayer. 

"Many, O LORD my God, are thy wonderful works which thou hast done, and thy thoughts which are to us-ward: they cannot be reckoned up in order unto thee: if I would declare and speak of them, they are more than can be numbered." (Psalm 4:5)

"How precious also are thy thoughts unto me, O God! how great is the sum of them. If I should count them, they are more in number than the sand: when I awake, I am still with thee." (Psalm 139:17-18)

LinkWithin

Related Posts with Thumbnails