Wednesday, June 14, 2017

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.

46 comments :

  1. I'm still praying for Ed and you all. That food sounds so delicious, I don't blame you for wanting to steal a bite!
    You hang in there dear friend!

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  2. I just saw this today & thought of you:

    When Times Get Too Hard To Stand - KNEEL!

    Perhaps the really rough times are ahead but you and Ed seem strong enough to weather the storm. Praying the treatments and the new diet will turn the corner for Ed.

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  3. Gina, we are continuing to pray for your family's needs, for renewed health & strength for Ed & for you. Praying the side effects are minimal & tolerable, & that the cancer will be destroyed. In Jesus' mighty name! I hope you can work something out with the dietician & Ed's meals. I love what Ed expressed to the children about quality time together. God bless you & your family. (Carol & Glenn in Phoenix AZ)

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  4. I am still praying. It is wonderful to see that you are getting support from others. I wish I knew you in real life to be a practical support but I will pray for you. Thank you for sharing how things are going. The quote that you shared applies in many situations. I struggle (my whole life) with my mental health and sometimes it is very difficult. I wish I didn't have it, and even with medical treatment (which I'd prefer not to use but can't live a normal life without...I've tried many other ways and they didn't work) sometimes I just grieve over that I wish I wasn't so "different". I wish I could just not have to deal with this! But there is no point in doing that since it does not change things. Its a process sometimes going back and forth between grieving what you wish was different and accepting it and then grieving again...at least for me. With time I have found more acceptance. Anyways...thanks for sharing that quote as it applies to so many trials in life.

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  5. You, Ed, and your family are in our family's daily prayers. May you feel God's comfort, peace, and healing during this difficult time.

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  6. Oh Gina, thank you so much for letting us all know how things are going and how we can pray for Ed and the whole family. So wonderful to see all of your sweet beautiful faces and the way Christ is with you every step of the way and orchestrating each moment. I will be praying that Monday and the following 6 weeks will be very very few side effects with great results!! Thank you again for sharing your journey with us.

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  7. Gina, you and your family are in my prayers daily. It is hard to accept help, I struggle with that also. But our Heavenly Fathers knows each of us and what our needs are.I am so glad you have so much family, friend, and church support.

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  8. My husband and I pray for Ed, you and your family daily and have also included you in our church prayer list. Although we may not know each other personally, we are family in Christ Jesus and we pray you feel our love and the prayers surrounding you.
    Blessings,
    Betsy

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  9. Hello there Gina, I haven't visited your blog for a long while and was so saddened to hear your news. But at the same time so very happy to see your joyful smiles and hear how wonderful your attitude and outlook still remains! You and your family are a great inspiration, and I wish you all well at this time of adjustment. Sending love and prayers x Helena

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  10. How wonderful to receive all those boxes of goodies, Gina. It is hard to accept help at first but don't forget that by doing so you are letting others bless you and your family. I will continue to pray for you all especially with the chemo treatment coming up. Big hugs.

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  11. Had to smile at your confession that you don't like to accept help from anyone as I've been that way myself. I am more accepting of help now since someone once told me that it's more blessed to give than receive & that I'm preventing someone from receiving a blessing by refusing help.

    I'm sure you've given help to many others and have been blessed to do it. Now let others help you so they can be blessed too.

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  12. Gina, your family is daily in our thoughts and prayers. Oh, dear Father, please................we plead for mercy and grace.
    So thankful Jesus is at the right hand of the Father with the words our hearts cannot even formulate.

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  13. Gina - we are still praying and we believe that with the treatments and the diet that Ed will come out of this with renewed vim and vigour. please don't be shy to accept help - the people in the community filled those boxes because they care, because they know the weight that you are carrying, and because they want you to focus on staying strong for ed and the children.

    and "because you are loved" by your community...and Our Lord.
    sending much love and healing prayers your way.

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  14. Gina, To serve others is a blessing, one's I'm sure you've enjoyed through the years. Please don't deny others a chance to recieve the same blessing by serving you. We continue to pray for your family.

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  15. How wonderful that you have so many people helping you at this time. I know what you mean by it being hard to accept help but I have come to see that as a special blessing because it shows me how much someone truly cares. Thank you for keeping us updated and please know that you,Ed and your entire family are in our daily thoughts and prayers. God Bless.

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  16. You and your family are often in my thoughts and prayers!

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  17. Those verses have meant so much to me lately as well. It's so God like to make those verses come alive in so many different layers for all the different stories in each of our lives! The goodness of God! Prayers continue here in Nebraska. God bless and keep you All.

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  18. Still praying here in KY. You continue to be a blessing and encouragement to so many (we will only know how many lives we touch when we get to heaven) even though you are on the receiving end right now.

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  19. When I was put on bed rest, my doctor told me that people want to help you....so just enjoy it! It is so hard to be the one who needs help and to accept it graciously. Think of the blessing that they receive by helping you. God is so good even in the hard times!

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  20. There are two parts of gifting - the giving and the receiving. You have obviously been blessed often to be the giver, now the blessing is from the other side! It is hard for me to be on that side, also! But God wants us to feel the FULL range of blessing that He sends us through our brothers and sisters - so happy you have such "family" near you! Prayers that the keto diet sits well with Ed during treatment. Deb

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  21. I read one of the comments above and I need to say that I agree- if we never receive then we deny others the joy of giving. We all like to give but someone has to receive! How wonderful that others are blessing you and your family.

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  22. I signed up for emails right before you found out your husband had cancer. I am so happy you are trying a Keto diet for him. There is more and more evidence of Keto helping many conditions including cancer. I have been Keto for about 4 months, my husband almost 2 months. The impact is has made on health issues (especially him) are nothing short of a miracle. There is a lot of help on Pinterest and Facebook. If you can, check out Go Keto with Casey (FB/YTube), Dr. Bruce Westerman (FB/YTube), and Keto after 40 & Beyond (FB), they are very helpful for info and recipes. Praying for healing and strength for you and your husband.
    A friend

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  23. I think of your family often and pray for you...It's a blessing to "hear" your processing, learning, and inspirations in this new uncertain journey.Praying for you especially as you juggle the treatments and family needs..I know God will be with you each step of the way..just take one step at a time..and do let people help you...they are God's hands for you right now. :)And I hope you have a very special Father's day weekend!
    Hugs,
    Lucinda

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  24. I heard a story of an Amishman that was told he had only so many months to live. He replied, "I was never promised that much before!" :)
    Our daughter (diagnosed with Crohn's) was asked if she would try just living on Ensure for 6 or 8 weeks to clear up some difficulty. She hated it and it didn't last very long. I guess she wasn't bad enough to go to that extreme. Your diet doesn't sound quite as bad although it wouldn't be nice to be hungry. God give you special grace and courage....Esther Weaver

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  25. Praying exactly as you have requested..treatments and keto diet work and eliminate all cancer, side effects are very minimal and abundant grace for you, your family, and those who minister to you and pray with you. Big HUGGS

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  26. Blessings to you and your family as you walk this journey! Having also had cancer in the last few years but with a different diagnosis, I know at least some of what you're going through. I'm so glad they are able to help you out with the food. Hopefully you can find ways to give him more nutrition. :)

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  27. Gina, praying for you and your family. My family traveled down the path of glioblastoma with my husband just as you are now. My thoughts and prayers go with you throughout the days ahead.

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  28. Praying for you Gina that God will give you the strength to get through all this, as well as your family I know this has to be alot for the kids and definitely Ed as well. I hope the diet works like it needs to and God watches over your family. Allow others to help you sweetie, big hugs you're in my thoughts and prayers. -Tiera

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  29. God's richest blessings on you, Ed and family! As a Christian Mennonite, homeschooling mom of 6 I just can't help but put myself in your shoes and think how would I handle it all. I know God gives abundant grace when we need it most. Our family will continue to pray for peace, grace and healing. Much love to you all!!

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  30. Thanks for sharing the more recent segments of your journey. wow, that is so nice that you can get the food for Ed without u having to figure that all out now. That's so special! We pray that God will heal as you go on from here! May God give you the strength you need daily for the tasks before you.

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  31. THank you for the update. Ed is prayed for every morning here as he is on our homeschool prayer list. We have prayed just this morning for him after reading this update May God continue to hold you close.
    Renata

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  32. My brother had an inoperable brain cancer last year. He had chemo and radiation and after some research on his own, he decided to follow a high fat, low carb diet. He never had given a lot of information about his case to anyone other than his Oncologist had told him it was fatal and the treatment would actually shorten his life but give him a better quality of life for the time he had remaining. He more than surprised everyone at his after-treatment checkup when they could not find any trace of the tumor. It had completely disappeared. His PET Scan showed no cancer anywhere in his body. Your husband is on a good protocol. Our family is keeping all of you in our prayers for peace and quick and complete healing.

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  33. How wonderful that the meals for Ed are all prepared and ready to go and so you don't have to prepare special meals for just one person in addition to regular meals for the rest of your big family. And an added positive note is that the food tastes good-----so often things that are good for you are not really tasty or are not properly prepared.

    You shouldn't feel that you are inconveniencing people who want to help. So often people really want to help to make things easier for a friend but there is nothing tangible that they can do to make things even a bit better. It gives them satisfaction to know that they are helping you in a real time of need. It's a very real win/win situation.

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  34. I know exactly what you mean about accepting help. I felt like that was one of the most important lessons God needed me to learn during my cancer journey because I had some pride in knowing that I was usually the "helper" and not the "helpee". Little by little those rough edges become polished through the difficulties life throws at us.

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  35. Thank you, Gina, for giving us a window into your lives. This helps us to know how to pray for you and helps us to feel more connected. God bless you as you go forward with treatment for Ed. May the Lord continue to sustain you and make His promises real to you.

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  36. Sometimes God is most magnified by the things he does through our weaknesses, up to and including showing us that his strength is sufficient for us. Keeping you in our prayers.

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  37. Praying, praying, praying......

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  38. Know that all across the other side of the world, we are praying for your Ed and all of you. I see you as very humble and incredibly strong woman. Blessings and God's peace to you through it all ~ Linda

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  39. How wonderful that you are able to share these things for the Glory of God. I know it is a blessing to many. We are still praying for all of you as you go through the days ahead. There will be many tough times, but God is able and He will hold you through it all. God is our refuge and strength.

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  40. Praising God that he is providing family and friends to help meet your everyday needs in practical ways. Take care sweet cousin and savor the special memories of each day. Praying for healing and peace!

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  41. Praying for minimal side effects Miss Gina your blog is a blessing

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  42. Keeping you all in my prayers. God bless you.
    Sue xx

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  43. Hugs and prayers, Gina. I am specifically praying that Jesus will give your family some amazing together times this summer. I really like how you're sharing about this story -

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  44. Thanks for the reminder that life is fragile and none of us knows how long we will be here; or have our loved ones here with us. I needed that this morning. The older children were fighting at breakfast, the little ones were naughty and needy. Life is frustrating and difficult, and I lose perspective so often. Thank you for testifying to His sufficient grace and beyond-understanding peace.

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  45. Just finding your blog....I've loved your posts on books and sourdough. I've been reading in the archives.
    I am also appreciating your candor and willingness to share this latest trial in your life. I am praying for you all.
    And learning....

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I'm still learning how to be a joyful homemaker and I'd love to hear from you!

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