It Is Not Fair

In July we will celebrate our fifteenth wedding anniversary. A few months ago I started brainstorming some cute ideas for a family photo shoot to celebrate the occasion.

But in May, on the day that we scheduled Ed's brain surgery, I realized that our July wasn't going to be normal. With images of shaved head, surgery scars, and chemo hair loss, I asked my friend Regina if she would come take our family photo the next day.

So the above photo was taken the day before Mother's Day, three days before Ed's surgery. Ed was feeling horrible, but willingly put on his best smile. I skipped any ideas of creative shots and was pleased with one pose on our house steps.

This week Ed and I were discussing how to celebrate our anniversary. Ed is still feeling very well and able to work but, since the date is toward the end of Ed's six weeks of treatments, most likely he will not feel as well. It is hard to imagine any fun way to celebrate when you are on a extreme diet and don't have energy.

Ed and I have always said that it is good we don't hold too much stock in how special dates are celebrated. On our first Valentines, Ed caught a terrible stomach bug. We've had anniversaries at unromantic occasions such as a funeral or a church conference. Other times I've been in early pregnancy without the energy for celebrating. Ed and I have always said that it is far more important how the rest of the year is spent than one day of our anniversary. I'll take 364 great days than one spectacular day in a mediocre year.

But even knowing that, thinking of our anniversary triggered a real pity party this week. I counted all the ways it was not fair that we can't even have the pleasure of looking forward to this anniversary when our years together are probably very limited.

I know, it is part of the grieving process, and there is nothing wrong with recognizing loss. But the next morning I could see clearly to recognize other truths that are also not fair.

It is not fair that I have enjoyed fifteen years of a joy-filled marriage when so many experience a marriage that brings them nothing but sorrow.

It is not fair that I live in a time in history and a place on the planet that allows access to medical advancements. So many in the world lack even  basic health care. Without brain surgery, Ed may not be alive today, and certainly he would not be able to communicate.

It is not fair that of all the religions in the world, I was taught from the Bible about the one true God who brings peace to our relationships here today and gives hope in the life to come.

I am blessed.

O God, Our Help In Ages Past

The more I think about God and His character, the more my trust in Him grows. I can hardly sing this song without tears. I'm so grateful for a God who has been faithful in the past and will continue to carry us through the future. 

O God, Our Help In Ages Past
by Isaac Watts

1. O God, our help in ages past,
   Our hope for years to come,
   Our shelter from the stormy blast,
   And our eternal home.
2. Under the shadow of Thy throne
   Thy saints have dwelt secure;
   Sufficient is Thine arm alone,
   And our defense is sure.
3. Before the hills in order stood,
   Or earth received her frame,
   From everlasting Thou art God,
   To endless years the same.
4. A thousand ages in Thy sight
   Are like an evening gone;
   Short as the watch that ends the night
   Before the rising sun.
5. O God, our help in ages past,
   Our hope for years to come,
   Be Thou our guard while troubles last,
   And our eternal home.

I love this rendition of this hymn in the following video.



And here is another song, I think from the same cd, that I have listened to over and over.



(You may need to click over to the blog to watch the videos if you are reading by email.)

Scrambled Pieces

It is hard to describe a cancer diagnosis. Some days it feels as if I was in the middle of putting together a giant jigsaw puzzle and someone tipped the table over. I'm now picking up the puzzle pieces and sorting them in piles. Some of them look familiar, but I'm not sure that they will ever go back into the same position. I'm guessing the final picture will look different than what I started. 

There are many normal segments to my days.  As a mom, my every day life of cooking, cleaning, laundry, and childcare looks the same and we are finding ways to enjoy lovely summer weather.

I'm still the same Gina who enjoys a good book and a fun conversation. I was asked if I am having a garden this year. I said that if I had known, I would not have planted it, but since its planted, I'm caring for it. But then I walk through the rows, pulling a weed, pushing an errant tomato stem into the cage, and picking an onion for supper - and I'm so glad to have a garden this year. 

There is something almost therapeutic about the familiarity of dirt under my nails. I do enjoy gardening and this year's rain showers and sunshine has grown one of my prettiest gardens. (Or maybe the garden is always pretty in June before the bugs, drought, and neglect take its toll.) I've already decided that I'll be okay with wasted garden produce. I had a bumper crop of spinach and broccoli and missed picking some of it but that is okay. If I don't feel like canning tomatoes, I'll give them away or add them to the compost pile. 

Earlier this spring our boys had made a hut in the pasture with a few pallets and scrap wood. They worked independently and it wasn't fancy or square, but they have spent numerous nights in their hut. They were satisfied with a flat roof until they decided to build rafters and find some roofing material. One evening last week my brother brought them some roof metal left from his project and he helped them reinforce their hut. 

Ed's ketogenic diet is going better. The first week or two he felt hungry but by adding a few more calories and giving his body time to adjust, he is feeling more energy.  Because he is using the diet as cancer treatment, he is on an intense keto diet of only 2,000 calories and 20 net carbs a day. His body went into ketosis very quickly - just a few days - which I credit to specifically-prepared meals and the fact that he had already lost weight over surgery. The first few days he cheated a little, but now that he adjusted, he is sticking with the doctor-provided meals. 

But it is rough going to social events. We apparently don't know how to celebrate without food. It is just no fun to not be able to participate. But I suppose this too will become more normal with time.

Saturday was one of those times with the celebration of Ed's nephew's wedding. But I thought Ed did well in ignoring the food and focusing on the conversations. A few weeks before I didn't even think he would be able to attend the wedding so it was good to see him feeling well enough to enjoy it. Now he is hoping to continue to feel good for the next two weeks while his nephew is on his honeymoon since they work together in the same department. 

Since Ed's family was all around for the wedding, on Sunday afternoon we all went to a local park where our children and their cousins found the perfect activity on a sweltering afternoon.

But Ed was so tired after church that he decided to stay home and rest in the air conditioning. 

On Sunday night, Ed took his first chemo pill right before bed. He had been told that bedtime was a good time to minimize nausea. The doctor had told him to try the first chemo without anti-nausea medicine to see if he needed it. 

After a few hours of vomiting, it was obvious he needed anti-nausea meds.  It wasn't a glorious start to his treatments.

Ed postponed his first radiation treatment until later in the day on Monday until he was feeling a little better. His two brothers joined us at the cancer center to show their support. These two have went with us to many doctor's appointments the last weeks and their support on many facets has been priceless.

We can't go back with Ed into the radiation room so he had the tech take a photo for us on his phone. This mask was made to fit Ed's head so they can hold him in the exact same position for each treatment. Ed says he doesn't mind it and it only takes about 15 minutes.

We just stayed in the waiting room doing puzzles during Ed's radiation.

Since that first day, Ed faithfully takes anti-nausea medicine an hour before his chemo and he has slept all night with no effects at all. He is feeling great and driving to his radiation appointments early in the morning before going to work. Every day he gets a little stronger though he still tires quickly. We expect that as the treatments continue, he will feel more side effects and will be forced to rest more. But we are grateful for this good week. We don't take even one day of health for granted.

Thanks so much for your continued prayers. One friend emailed me to say that each morning she prays for us while she is in the barn cleaning up from milking. Unknown to her, that is the time of Ed's radiation treatments each morning.

We will never know what effect your prayers are having, but we do know that they are helping us trust that God will put the pieces of our lives into a picture that will glorify Him.

"That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ." 1 Peter 1:7

Peace, Perfect Peace

I've been encouraged to keep a list of God's answers to prayer. One of those answers, which I consider a miracle from God, is sleep.

Every since Ed's anointing service, I have slept very well (except for the one night in the hospital after Ed's surgery that Ed was so uncomfortable and the nurses were constantly in his room.) I sleep deeply, soundly, and wake refreshed.

This is in contrast to the nights before the anointing when I laid awake, heard every chime of the grandfather's clock, and worried. At that point we had no idea what was wrong with Ed, and my imagination ran wild. But if you would have asked, I would have told you that I never imagined a diagnosis like aggressive brain cancer with a short life expectancy.

There is no reasonable explanation for why I could have learned the worse about Ed's condition and be able to sleep. It has to be God.

"I cried unto the Lord with my voice and he heard me out of his holy hill. Selah. I laid me down and slept; I awaked; for the Lord sustained me." Psalm 3:4-5

When I was thinking of what hymn to share next, I thought of  Jesus, I Am Resting, Resting. It has been a favorite of mine for years.  But I discovered that I wrote about that hymn about seven years ago. So I chose a different hymn.

I remember the first time I heard "Peace, Perfect Peace." I was with a group of youth who were singing at a nursing home and one of the residents requested this song. We completely botched it. A few years later when I joined the church I attend now, I heard it sung often, but it took me awhile to get over that first introduction.

The tune and the words are simple, but now I appreciate the message of this short song. The words were written after the author heard a sermon on one of my favorite verses.

"Thou wilt keep him in perfect peace whose mind is stayed on Thee: because he trusteth in Thee." Isaiah 26:3

Peace, Perfect Peace 

by Edward H. Bickersteth, Jr.

Peace, perfect peace, in this dark world of sin?
The blood of Jesus whispers peace within.

Peace, perfect peace, by thronging duties pressed?
To do the will of Jesus, this is rest.

Peace, perfect peace, with sorrows surging round?
On Jesus’ bosom naught but calm is found.

Peace, perfect peace, with loved ones far away?
In Jesus’ keeping we are safe, and they.

Peace, perfect peace, our future all unknown?
Jesus we know, and He is on the throne.

Peace, perfect peace, death shadowing us and ours?
Jesus has vanquished death and all its powers.

It is enough: earth’s struggles soon shall cease,

And Jesus call us to Heaven’s perfect peace.

I'd love to here your testimonies of the peace that God has given you.

Weep. Trust. Embrace.

This morning I flipped open my planner and happened to notice the quote on the first page.

Occasionally, 

weep deeply

 over the life you hoped would be. 

Grieve the losses. 

Then wash your face. 

Trust God. 

And embrace the life you have. 

- John Piper

I think that would be a fitting description of our life right now. As Ed told our children, "We don't know how much time I will have (but then we didn't know it before this diagnosis either). But we are going to try to make good memories in the time we have."

This week feels like the eye of the storm. Surgery and the appointments with tests, research, treatment plans, and doctor conferences are behind us. This week the calendar is nearly empty. We enjoyed a fun family day on Monday. Though Ed is still weak, he is getting stronger and is hoping to finish up some work projects this week.

But next Monday, June 19, Ed begins six weeks of chemo and radiation. There is lots of scary unknowns on how Ed will tolerate treatment and what side affects he will experience. We are thankful that he can get his radiation here locally and the chemo is an oral drug so our travel time is reduced but still the schedule looks crazy.

Ed is also taking part in a clinical trial which is testing the impact of a reduced-calorie ketogenic diet on glioblastoma cancer. The ketogenic diet is a high-fat, low-carb diet that has been used successfully for decades for epileptic children. There is some evidence that the ketogenic diet will help shrink brain cancer, but there have been very few human studies done. If Ed can tolerate the diet, the study will last six months, though we could continue the diet longer if we wished.

Last week after visiting the study doctors near DC where Ed signed up to participate in the study, we stopped at our local pizza shop for their incredible whole hog pizza for Ed's last "normal" meal.

The diet is very strict and the study is providing all of Ed's meals to make it easier for him to stay on the diet. Among the various options we considered, Ed liked this one since it wouldn't make so much more work for me to figure out what to feed him. All we need to do is pick up the tote of a week's worth of frozen meals.



I was hoping the caterer who is preparing the meals would have some creativity and I wasn't disappointed. There is a lot of variety and Ed says the meals are delicious. Sometimes they smell so good I want to steal a bite. Each day has five dishes. Here is a list of today's menu.
Breakfast: Egg Salad
A.M. Snack: Cocoa-Mocha Granita
Lunch: Chinese Pork Burgers
P.M. Snack: Spinach and Creme Fraiche
Dinner: Pork Shoulder and Cabbage



The portions are small, but they are supposed to be satisfying since they are so high in fat. But since Ed is already thin and has an active lifestyle, it hasn't been enough food for him. We are working with the doctor to add in some more calories. Today marked the first full week on the ketogenic diet and he seems to be adjusting well.

We continue to be blessed by the many ways that our friends and family are supporting us. One of my sister-in-laws made strawberry jam for us. Another sister-in-law stocked our freezer with fresh peas from our local pick-your-own patch. And those are just a few examples.



Yesterday these boxes arrived on our kitchen table from the families at church with the label "Because You Are Loved." The children are excited about opening the packages with their names, though I plan to hold most of them until the weeks of Ed's treatments.

I've been surprised to find how difficult it is for me to accept help. I hate to burden or be an inconvenience to others. Maybe I have more independence - okay, I'll call it pride - than I realized. Maybe I've enjoyed hearing comments such as "How do you get it all done?" I like feeling efficient and super productive - not needy. If I did accept help, such as baby meals or babysitting, I quickly tried to return the favor.

But I know there is no way I can return all that has been given to me these past weeks. I can't in a lifetime pay back all the prayers and support both physical and emotional that has been given to us. And neither could I pretend do it all on my own. My whole family has been more needy this past month and I just can't become stronger for them.  Maybe God wants me to remember I'm weak and needy. Maybe He wants me to learn how to accept help.

I've been watching for references to "grace" when reading the Bible and I found this passage in James.

"But he giveth more grace. Wherefore he saith, God resisteth the proud, but giveth grace unto the humble. Submit yourselves therefore to God...Draw nigh to God, and he will draw nigh to you....Humble yourselves in the sight of the Lord, and he shall lift you up." (James 4:6-8,10)

And of course that oft-quoted Scripture that sure applies to me today.

"He said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2 Corinthians 12:9)

The choice between relying on my own strength or acknowledging my weakness and leaning on God is not hard. I know that without God (and His people) I would have fallen to pieces weeks ago.

So again, thank you for your prayers. Please continue to pray with us that the treatments will be successful in destroying Ed's cancer. Pray that he will have minimal side effects. And most of all, pray that God will continue to pour out His grace and peace on our family.

Be Still, My Soul

This hymn has been Ed's favorite for years. When I went looking for the words to share with you, I found that the original poem had two additional verses that I never remember seeing in a hymn book. I'm listing the entire poem here.

Be Still, My Soul
by Katharina A. von Schlegel
Translated by Jane L. Borthwick

1. Be still, my soul: the Lord is on thy side.
   Bear patiently the cross of grief or pain.
   Leave to thy God to order and provide;
   In every change, He faithful will remain.
   Be still, my soul: thy best, thy heav’nly Friend
   Through thorny ways leads to a joyful end.
2. Be still, my soul: thy God doth undertake
   To guide the future, as He has the past.
   Thy hope, thy confidence let nothing shake;
   All now mysterious shall be bright at last.
   Be still, my soul: the waves and winds still know
   His voice Who ruled them while He dwelt below.
3. Be still, my soul: when dearest friends depart,
   And all is darkened in the vale of tears,
   Then shalt thou better know His love, His heart,
   Who comes to soothe thy sorrow and thy fears.
   Be still, my soul: thy Jesus can repay
   From His own fullness all He takes away.
4. Be still, my soul: the hour is hast’ning on
   When we shall be forever with the Lord.
   When disappointment, grief, and fear are gone,
   Sorrow forgot, love’s purest joys restored.
   Be still, my soul: when change and tears are past
   All safe and blessed we shall meet at last.
5. Be still, my soul: begin the song of praise
   On earth, believing, to Thy Lord on high;
   Acknowledge Him in all thy words and ways,
   So shall He view thee with a well-pleased eye.
   Be still, my soul: the Sun of life divine
   Through passing clouds shall but more brightly shine.

I've included a video if you want to listen as well as read. If you are viewing by email you may need to click over to the blog.

Living With Cancer

We are figuring out what it is to live with a cancer diagnosis.

Much of life feels normal, like little girls playing with the newest litter of kittens. 

Some of life is returning to normal, like last Sunday when Ed was feeling well enough to go to church - the first time we attended church as a family for a month.

But with cancer, every day together feels like a gift. 

We continue to be blessed by the help of others. Before he got sick, Ed was planning to cut down some unwanted trees at our neighbor's for firewood. My family came one evening last week with chain saws and wood splitter.

They started with a tree in our yard that had been hit by lightning several years ago.

The children pitched in with their energy.

The little ones had to watch the action from inside.

And my mom and sister-in-laws tackled my very weedy garden.

By the end of the evening our woodshed was stuffed full with more than a year's supply of firewood. Other ways friends have blessed us this week are by helping install an air conditioner, getting our truck inspected, and fixing the motor on Ed's dust collector. 

The brilliantly beautiful weather allowed us to have several picnics with friends this week.

My dad made a dutch oven meal with fresh strawberry shortcake. June joys!

The staples in Ed's head have been removed and his hair is growing back enough to nearly cover the scar, though he still has swelling on the right side of his head. Every day Ed gets a little stronger and several days he went to work for a few hours. Ed was especially thrilled to get permission to drive since my chauffeuring skills were taxing his (and my) patience. 

The last two weeks Ed has spent a lot of time with people. Whether business contacts, an acquaintance that we meet at the park, a church friend who invites us for a picnic, or an old friend who stops in for a visit - Ed has spent hours in conversations. I love that Ed views each one as a ministry opportunity and gift from God. 

When faced with your own mortality there is nothing that matters besides the eternal souls of people. 

And life with a cancer is only possible because we know the resurrection power of Christ.

Jesus said, "I am the resurrection and the life: he that believeth in me, though he were dead, yet shall he live; and whosoever believeth in me shall never die." John 11:25-26

Hannah - A Woman Who Seeks

The last two weeks have been full of visits to doctors and research of the maze of treatment options. Some days we have walked out of an doctor's office shaking our heads and saying, "He might be a great doctor, but not for us." Other times we have known within minutes that we had found our doctor. We continue to feel the power of your prayers as God gives us His amazing peace.

One of the downsides of being a writer is that there is always a chance that what you write will someday come back to haunt you.

A few days ago I happened to remember an article I wrote years ago about the Health Maze. I pulled it up wondering if I'd have to add a disclaimer that this wasn't true with brain cancer. But Ed and I both read it and agreed that the truth of God's Word can stand up to any circumstances. Even brain cancer.

This spring Keepers at Home magazine published an article I wrote about Hannah - another in Proverbs 31 series. I wrote it quite a while ago but when I picked up the magazine recently, I was struck with how well the topic of seeking and surrender applied to me today.

Hannah – A Woman Who Seeks

She seeketh wool, and flax, and worketh willingly with her hands. Proverbs 31:13

Tears dripped through her fingers and onto her robe. Her lips moved soundlessly. The tabernacle was filled with the festival crowds but she didn't notice. Head in her hands, she was focused only on her petition.

For years Hannah had carried the shame of barrenness. Mocked by other women, she longed to have a child. Even the love of her husband did not salve her empty, hurting heart. The yearly trip to sacrifice at Shiloh was her opportunity to pour out her longing to the Lord.

At the doorway sat the high priest, watching the crowd. Hannah's strange behavior caught his attention and, mistaking her agony for drunkenness, he spoke sharp words of condemnation. When she explained, Eli quickly blessed Hannah and assured her that God would grant her request.

What is it that I seek with all my heart? A happy marriage, a baby or two, a long, fruitful life? Maybe it is the salvation of a family member, the healing of a terminally ill loved one, or finances to pay off debt.

 Am I embarrassed to reveal my longing to others? Am I ashamed to pray for my heart's desire – and allow others to intercede with me?

I could pretend I don't have needs, but then I miss a blessing because of the pride that keeps me silent. “Pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.” (James 5:16)

God gave Hannah her heart's desire, a son. But she did not hold her child to herself. She gave her young son Samuel back to God. Samuel served God in Shiloh at the Lord's house for the rest of his life.

It wasn't a reluctant offering, a grudging sacrifice. It was an exuberant, lavish, abundant gift. When giving up her longed-for son, Hannah spoke a song of praise to God (1 Samuel 2) that would later become the model for the song of another expectant mother, Mary the mother of Jesus, centuries later.

But Hannah did not forget Samuel. Each year Hannah made a new robe for her son and brought it to Shiloh when they went for the yearly sacrifice. I can imagine the prayers and love she stitched into each seam. And God didn't forget Hannah either. He filled her arms with five more children.

God may choose to give me the desire of my heart. But am I then willing to give it back to Him to be used for His service? Or do I selfishly hold it tight, afraid that I might lose what is so dear to me? “For what shall it profit a man, if he shall gain the whole world, and lose his own soul?” (Mark 8:36)

A heart that seeks God and hands that seek to serve, we find both in the example of Hannah.