What to say and what to do

I have hesitated in writing this post for some time because I don't know how to do it right.

Helping each other is an imperfect science, and Jacob and I are continually learning so much about it, as well as our loved ones.

I don't think there is any perfect way that we can help those around us.

There is, and will always be, a gap, a chasm, an impenetrable space between what we individually know and are experiencing, and the capacity of others around us to help.

These testing, trying experiences really are individual and some parts of them we walk alone, with only the Savior by our side.

That is part of the design of this test of mortality.

However, there are many things that people around us can, have, and will do to help. That help does not lift the burden, but it does, most assuredly, make it easier to bare.

First, on what to say. 

I think we have all had the experience of hearing about someone's pain, tragedy, or heartache and not knowing what to say.

Sometimes there are just no words.

Many months ago I found THIS ARTICLE, an Op-Ed piece in the LA Times.
(Take a minute to read it.  It is well worth your time.)

It is wonderful at capturing what kind of verbal communication is helpful to people in pain.

The premise is so true- Comfort IN, Dump OUT.

In our experience, Jacob is at the center of the ring, with me, and then our children being in the next closest circles. Our parents are in rings closer than our siblings. Our extended family and friends are in rings beyond that.

I have come to appreciate when people ask how I am doing, and then really listen to what I have to say. It is comforting when people acknowledge that this is a crappy experience, that they are so sorry, or even when they say that they don't know what to say.

It seems to validate my feelings that are ever present. 

At the same time, there is nothing like being bathed in the comfort of kind and uplifting words. I have time and time again read emails, texts, cards, comments, etc. that people have written to me and felt pure love wash over me as I felt of their genuine concern. That comfort has been essential.

I know the same is true for Jacob, and I appreciate everyone who takes the time to reach out to him individually.

This past conference, Elder Eyring spoke about this concept. His talk is wonderful at giving insight into how we can help comfort those around us by helping them to feel the comfort of the Holy Ghost. He stated, "We lighten the loads of others best by helping the Lord strengthen them."

I have seen the truth of this in my own experience.

Second, on what do to. 

I am grateful that the question we most often hear from friends and loved ones is, "What can we do to help?"

We hope to never take for granted the many people who are ready and willing to help us in any way that we need, and we hope to always be those kind of people when our friends or family need us.

With this most recent surgery, I felt so overwhelmed at the prospects of the next round of treatment that, for the first time, I really wasn't able to answer that question.

I barely knew what to do for Jacob and our kids, and anything else felt so taxing and overwhelming that I didn't know how to answer.

I still don't. 

However, I can say that in the last weeks I have seen people just act, without being asked or told, to help and bless our family.

Someone brought dinner the night of his scan. We were in such a fog that it was a blessing to have food to put in our mouths. Another friend offered their home for our family members to stay in while they were in town. Someone else mailed us a new set of hair clippers when they read about ours being broken. We found a hand stitched "get well" quilt one morning on our doorstep. Two people brought me sunflowers. Our neighbor continues to mow our lawn. We got a letter in the mail from someone also suffering, that brought us immediate tears of gratitude and relief. A friend made darling teacher gifts for my girls to give their teachers on the last day of school. We received several eating out gift cards in the mail, on the doorstep, and had dinner hand delivered from one of our favorite restaurants.  Ellie's school teacher took her and Lauren out to lunch. Another friend offered us the use of her cabin at any time. Other friends stayed the night with our kids so we could have an anniversary getaway. My visiting teacher insisted on coming over to help me clean and spent two hours sorting through a room full of toys. Friends invited our kids over to play and showed them a great time. Neighbors, ward members, and friends continually offer their help and tell us to call them when we need anything, or even for certain things specifically. Two friends visiting town made time to stop by and visit us. My mom, dad and sister deep cleaned my kitchen. Jacob's brother cooked, did dishes, and watched our kids so we could go on a date, and his other brother came and cared for us one day when we all had the flu.

I could go on and on and on and on. 

There are so many things that people have done to help lighten our load. It is very humbling to think about how much service we have recieved and how frequently people act to bless our family.
It is a manifestation to me of the love our Father in Heaven has for Jacob, me, and our children as people are continually inspired, prompted, and encouraged to act in ways that lift and bless us.

I don't think I need to cite a list of things you can do to help those in your circles who need it. There are countless ways that we can help each other. I think the most important part is that we act on the thoughts, feelings, impressions, or intentions we have to help each other.

It is in the performance of these acts that our lives, and hopefully the lives of the givers, have been blessed and that we have felt genuine love and concern from those around us.

I am grateful to God who very often allows us, imperfect individuals, to be the instruments through which He sends help, comfort, and love in times of need. It is a beautiful part of His plan that we learn to succor, lift, and strengthen each other and in doing so become more like Him.

May 20, 2015

It's been three weeks since Jake's surgery.

The plan from here is for him to receive IMRT radiation to his most recent tumor bed. This radiation will be given in a daily dose, Monday through Friday, for the next 6 weeks. He had the planning MRI last Thursday and will start treatment tomorrow. 

In addition, Jake will take a daily chemotherapy pill for the full course of the radiation. 42 pills from start to finish.  He took these pills last year, but with an alternative radiation therapy that was only a one time treatment. 

After the 6 weeks of radiation he will have a few weeks off and then head in for the post-radiation MRI. Jake also stopped wearing scalpie, the Optune scalp device, after his scan on the 28th so that he could have surgery and to give the incision time to heal. Patients do not wear it during standard radiation therapy, so he won't put it on again until after his radiation treatments are over. 

Jake made the decision to transfer onto long term disability after his scan showing a new spot in February. Thankfully, he had several weeks to transition off of all of his cases and hand everything over in a way that he wanted to. Looking back now, it is good that he made that decision with work as the new tumor, surgery, and these next treatments have and will be consuming. 

Emotionally we have been riding a roller coaster. Shocked by the new tumor, relieved he could have surgery the next day, grateful the surgery went well, exhausted from the hospital stay, overwhelmed by the paperwork and insurance issues to deal with, sorrowing for the progression of his disease, encouraged by the support of family and friends, saddened in the face of our still uncertain future. 

We are trying to take this one day at a time. But sometimes, just one day is a lot.

I will write more specifically later, but the one bright spot over these last weeks has been the goodness of people to us. We have been so blessed by the service of others and would not have made it without our family members literally coming to the rescue.

We are grateful to know that we are not facing this experience alone. 

May 6, 2015

It has now been a week since my (Jacob) surgery. I came home from the hospital on Friday (May 1) and have been recuperating since. I was able to watch my kids play sports on Saturday and attend church on Sunday. I am doing fine. I have mild aphasia.  I don’t know how permanent it is yet because I’ve only been out of surgery for a week. But for now, I can communicate, read, and write well and most people wouldn’t even know that I have anything wrong with me. Physically, I need more rest, but other than that, I came out of this latest thing in pretty good shape.

I just wanted to make sure I thanked all the people who helped us over the past week. Most of all, I wanted to thank my parents, in-laws and sister in-law Claire, all of whom made a superhuman effort to come down here to be with us. I’m also thankful for all the thoughts, prayers, and words of support conveyed electronically.

Tonight at Lauren and Ellie's talent show. Tommy went home early with Aunt Claire.