That was a long day

Thank you all for your interest and concern. 

Yesterday was a looooong one, but Jake withstood the surgery and is awake, talking, moving and feeling better and better. 

We checked in to the hospital at 5:30 am and he was put under at 8:30 am. The surgery started just before 10:00 am and didn't finish up until 4:30 pm. 

The doctor came in and gave us the report we were kind of expecting. Most of the fluffiness was radiation necrosis, but on the margin there were a few clusters of tumor cells. It turns out it was nearer to Jake's language center than I understood initially and the doctor removed as many of the cancerous cells as he safely felt he could remove without damaging Jake's language ability. He was unable to say conclusively that there aren't tumor cells in the remaining functional tissue. 

Jake will have an MRI this morning to give a better idea of how things look.

Jake was as wiped out as I've seen him after a surgery and thankfully was able to have an anti nausea medication that helped him sleep for many hours. There was a great backlog of surgery patients and so we waited in the recovery area until midnight when they were finally able to get him up to a room in the ICU. 

Initially his body was weak, but he is gaining strength by the minute and he told me that he feels so much better even this early in the morning. 

He still suffers from aphasia but is able to communicate the things he wants and needs. He is able to smile at my jokes and still has his innate sense of humor. 

It was a comfort to both of us that he had no issues with bleeding during the surgery and although his wound may be slower to heal his body held steady throughout the whole procedure. 

Thank you again for your love, prayers, thoughts and concern. They were a great strength to Jake. I can also say that although surgery days are not my favorite, I have felt a palpable calm and peace during the whole process and know it is in great measure an answer to so many prayers on my behalf.

Surgery is scheduled

We got word yesterday that Jake's surgery will be this coming Wednesday, January 27. He is the second operation of the day and checks into the hospital at 11:00 am.

We are grateful for our parents who are able and willing to come down and help us with our kids. Our ward is arranging for a few meals next week and I've tried my best to get our ducks in a row so we're ready.

It is kind of like preparing to go on a week long vacation without kids....

To the hospital.

Not the ideal destination, but thankfully we have clean clothes in our drawers, our bills paid, the floors mopped, and food in the fridge and can now just have wonderful weekend together.

We appreciate all those who are thinking of, praying for and fasting for Jake and would ask especially for your faith in his behalf on Wednesday.

Thank you for your love. As cited in this amazing talk, love is a potent healer and has bound up our wounded hearts as we've walked this road with so much support surrounding us.

Aphasia and Itching

I wish I could thank each of you individually for reading my last post.

Writing out my feelings is a kind of a therapy for me. I walk around with these ideas burning in my mind, but when I write them out I feel somewhat relieved of the sentiments and better able to move on to normal living.

I also feel like when I write, its as though everyone reading takes a little part of the sorrow and the burden and it somehow becomes lighter.

It is also helpful to know that what we are experiencing, learning, and suffering has helped people. Otherwise our suffering often seems so pointless, but as we share it and see others learn and grow it helps us find some immediate meaning in the process.

And so again, I say thank you for reading. It helps more than you know.

Now I wanted to talk about my dear Jacob.

He has been struggling lately.

Ever since the scan last week his spirits have been depressed and the weight of this news is heavy on him.

Facing your mortality is a terrible trial. And it seems to crop up for him again and again and again.

He is also struggling with some immediate issues that are very difficult.

He suffers from aphasia, which is a speech disorder caused by damage or swelling in the left hemisphere of the brain. All of Jacob's tumor growth and swelling has been in his left hemisphere where language is controlled.

Aphasia means that it is hard for him to speak, and he suffers most in having difficulty producing language. From the American SLH Association's website he has experienced these symptoms:

--Experiences difficulty coming up with the words he wants to say

--Substitutes the intended word with another word that may be related in meaning to the target (e.g., "chicken" for "fish") or unrelated (e.g., "radio" for "ball")

--Has difficulty putting words together to form sentences

Aphasia does not affect his intelligence. Jacob is incredibly bright and perceptive and his mind functions at a high capacity, so you can imagine the difficulty he has experienced the last weeks every time he opens his mouth to speak and cannot fully communicate the thoughts in his head.

It has been a great trial.

His aphasia seems to be progressive aphasia, where he has experienced decline over a short period of time, especially during the last month.

We were reading about how Ralph Waldo Emerson, a great writer and wordsmith, experienced aphasia at the end of his life and it turned him into a recluse because it was so difficult to be around other people, unable to communicate the things he wanted to say.

I know Jacob deals with aphasia daily, as we attend church, school functions, meet with friends and family, interacts with clerks and takes phone calls, and as he teaches his Sunday school class.

It would be so easy for him to withdraw.

But he does not. He continues to put himself out there, to be with people, to try. I admire him so much for continuing to engage even when it is hard.

His other immediate difficulty is internal itching. Horrible itching, all over his body, that comes on in the evening and persists for several hours.

His doctors seem to think it is an allergic reaction to the chemo he has been taking for almost two years. It affects your nervous system and neuro endings are embedded in skin and so he itches.

There are no creams, no lotions, no ointments, or medications that seem to help.

It has also been progressively getting worse for the last 6 weeks or so and has been very hard.

Jacob does not complain. Most people will be surprised to learn about these struggles. He endures, and endures, and endures but is feeling defeated.

We hope that this next surgery can alleviate these problems. That the swelling will go down and that his aphasia will lessen. That he can take a break from chemo and that his nervous system will improve.

But I know he would appreciate your prayers.

Sometimes I think he wonders how much longer he can endure.

As we came home last week after the scan and talked to the kids, we told them about the surgery but explained that Dad had been through so many surgeries and at some point could choose to say no to any of these procedures that put his body, mind, and spirit through so much strain.

Lauren and Ellie both processed that information and their eyes filled with tears at the prospect of their Dad not doing something if there was something he could do to fight this disease. Their reactions roused Jacob's spirits to continue to do whatever he could for the benefit of his children. 

Each day he has with them is a gift and I am grateful for all that he suffers to ensure that there are still days to come.

Another bend in the road

This story starts almost two years ago.

When Jacob called me from work on a Friday afternoon feeling like he was going to pass out.

From that moment, our life would change and never be the same.

We found out through an MRI that evening that there was a growth in his brain. We didn't know what it was and spent a month waiting to find out.

But, somehow, through that waiting, thought, and prayer I felt what the truth would be.

Cancer. Brain cancer. Glioblastoma multiforme. A death sentence.

For me, the hardest part was believing that Jacob could live. Accepting that his death is sure has always come so much easier.

And yet...

Here he is. Still alive. Still functioning. Still with me.

The hardest part of all of this and, as I'm sure you can imagine, there are many, but the hardest part for me is the thought of losing him.

Not his income, nor his help with the kids, nor his leadership in our him, nor any of the million things he does to take care of our family.

But losing Jacob.

In the real, present, physical sense.

I know that I will never really lose him. In an eternal, spiritual, sealed, resurrected sense.

But in this mortal sphere, the thought of losing him is what, from the beginning, has most seared my mind, heart and soul.

Jacob is my soulmate. My dearest friend. My anchor in the storm. My guide. My lover. My steadying influence. My companion. My other half. My everything.

I know many married couples say to their spouse "I don't know what I'd do without you," or "I can't imagine life if you were gone."

And yet here I am, living with the knowledge that one day when Jacob's heart stops beating mine will continue. When his spirit leaves his body mine will stay put. That I will have to live even when he is gone.

And that kills me.

And yet....

Here he is. Still alive. Still functioning. Still with me.

I faced the start of a new year with trepidation. At the close of 2014 I remember thinking "good thing that year is over" but then almost immediately another storm of treatments began. I know better than to wish a year good riddance now.

But I couldn't help but feel some trepidation at the prospect of a new year. Twelve months that could hold untold difficulties in store.

I chose to quietly hold Jacob through the night and feel grateful that he is here with me.

We had a week to unpack and get things in order, and then knew that he would have a scan on the 12th. Over the last month it has become more difficult for Jake to pull down words and say what he wants to say. This was a change that we both wanted to ignore, but could not turn away from. In all other aspects his functioning has been the same, but the increasing difficulty of speech was a hurdle we could not get over.

Because of that I started to feel a sense of uneasiness days before the scan.

I visited with my counselor and that helped, but there was a gnawing in my heart that would not leave. A forewarning of the spirit. Jacob and I prepared some MRI plans, to help us approach it and have some idea of what we'd do with the possible outcomes from the scan.

We spoke about things that were hard to discuss in that process. Diminishing abilities, saying goodbye to family members, his body shutting down, dying.

Jacob then gave me a blessing. It was very difficult for him to do because of his speech and did not leave me feeling peaceful. While it did give some assurance for his future, it left me with doubt about the immediate prospects.

Then Sunday night our sweet Ellie was awake all night with an earache. She was in our room from 11 pm- 3am and I was trying to comfort her to the point of exhaustion. Then, very clearly I had the thought to move her to TV where she could watch a movie to take her mind off the pain and so I could sleep.  She was able to feel a bit better and I was able to rest for a few hours, but I was pushing the boundaries of exhaustion physically, emotionally, mentally, and spiritually.

And after getting her to the doctor, putting in a load of dishes, and starting laundry I made it to my room where I fell in a heap on the floor. The floodgates of sorrow opened and I could do nothing but cry and cry and cry. I finally texted Jacob, asking him to come in, and he sat with me, stroked me, and held me through it all.

I felt for that time the full burden of this disease, this life, this sorrow and it overpowered me.

I slept for a while, but woke up with the same heaviness surrounding me.

I watched some TV for an hour and then recovered enough to get the girls from school. As I opened the garage door I was surprised to see the sun shining.

It had been raining and overcast for the entire last week and it was as though I'd forgotten the warmth, light, and hope that the sun brings.

The kids asked if we could go on a bike ride, so we loaded up and took to our neighborhood streets. It was such a simple thing, but hearing their sweet voices, feeling the wind on my face, moving my body was invigorating and brought me a measure of peace.

Then Jacob called for family home evening. I saw that it was my turn to give the lesson and was resistant. I was in a bad state and did not feel spiritually minded to teach my family.

The night before I'd started reading a book called "Girls who choose God, stories of strong women from the Book of Mormon." My grandma gave it to one of the girls for Christmas and so I thought I'd read it to them.

The stories were sweet and simple and I felt that if I couldn't present a whole lesson for family night, I could at least read a story.

And the story that came next from where we left off was the story of a Lamanite Queen of great faith.

I read the following
    "A lamanite queen ruled with her husband, King Lamoni. One day, a missionary named Ammon arrived in their land. Ammon began to teach the king about God's love and mercy. When the king heard these truths, light filled his soul! His joy was so intense that he collapsed. After the king lay completely still for two days, the queen became worried. Some people thought he was dead and wanted to bury him, but the queen wasn't sure what to do.

The queen had a choice to make.

She could give up her husband for dead,

or

she could ask God's servant Ammon for help...

Exercising her faith, the queen asked Ammon to come and see her husband. Ammon explained to her that the king was not dead and promised he would rise again the next day. Ammon asked the queen if she believed his promise. Though she didn't fully understand Ammon's teachings, she still believed him. Ammon said, "Blessed art thou because of they exceeding faith; I say unto thee, woman, there has not been such great faith among all the people of the Nephites."

The queen's incredible faith was rewarded when her husband awoke the next day.

The the story ends by asking, "When have you chosen to have faith?""

Scriptural account here: Alma 18:40-43, Alma 19: 1-14

As I read this story out loud with tears in my eyes I knew, and shared with Jacob and our children, what my answer would be.

I would choose to have faith.

I would choose to believe.

We went in for Jacob's MRI on Tuesday and it revealed two more small areas, one touching on the front and one on the back of his tumor cavities, of inconclusive fulffiness. Fluffy is not a good cancer word.

The doctors are unsure what the change is-  either more cancer or radiation effect (necrosis), which both manifest similarly on a scan and which they can't be sure about until they test the tissue.

The fulffiness is creating some swelling that is pushing on his language center, thus inhibiting his speech. Thankfully it is not fluffy on or near his language area.

So back onto the operating table he will go.

But because of his Avastin infusions, and the risk they pose for internal bleeding, Jake can't have surgery for two more weeks. This gives us a window to prepare.

This surgery runs the same risks as previous ones, but with further complication in that by doing a full clean out of the tumor beds there may be some functional tissue that is removed, leaving Jacob without some function or other.

This will also be Jake's fourth craniotomy and the toll these surgeries, treatments, and medications have had on his body is real.

And yet...

Here he is. Still alive. Still functioning. Still with me.

And I will not give him up for dead.

I know there are many who have read this story over the past two years. You have seen each of these chapters unfold and you have ached for Jacob, for me, for our children. You may have asked at one time or another, Why them? Why God? Why this suffering?

I have no answers to give. I do not know why.

But I do know God. I know Him as my Father in Heaven, a real, tangible, sympathetic person of flesh and bone who lives, who provides, who answers prayer, and who I will stand before some day.

I have been in the depths of sorrow, of grief, of despair. I now know something of those places that so many of you have visited through the tests and experiences of your lives.

And I know that His Son, the Savior Jesus Christ is the only one who can fully meet us when we are there.

He is the only one who will descend below to find our broken hearts, lift our wounded bodies, touch our aching souls.

And I will not turn away from Him. Though I don't understand, though I can't see, though I have been stretched to my limits, though I ache, though I rage, though I mourn and though I do not know, I will stay with Him. I have to stay with Him.

He is the only way out. He is the only way. He is the way. For me and for each of you.

Wherever you are, whatever your pain, whatever your doubts, He is there for you.

But we individually, you and me, must decide to come to Him. To open our hearts. To let Him in.

Pray. Say your real thoughts. Your real pain. He can handle it. Say his name. Call out to Him. Tell him where you are. Ask him to meet you there.

Read the scriptures. His voice is so clear in every account. He speaks. His words are there, available, open to all. Read and read and read His words. Let his voice comfort your soul.

Obey. Live up to your covenants. Keep His standards. Make changes where necessary. Repent. Decide today to soften your heart. To try.

I can see His hand manifest so much more clearly in my life. Whereas two years ago I remember saying frantic prayers and feeling deflated when they went seemingly unanswered, I have learned that He works by small and simple means.

Just writing about the events of Monday- thinking to have Ellie watch TV, being comforted by Jake, seeing the sun, riding bikes with my kids, reading the story of a woman of faith- show me His ability to help. It may not sound like much, but it was enough to turn my darkness into light, my despair into hope, my turmoil into peace.  That is the power of what He offers to each of us. The power to heal our wounded hearts.

Two years later I am grateful for two things.

Jacob. Here he is. Still alive. Still functioning. Still with me.

Jesus Christ. That I am learning to see His love manifest even, and especially during, this terrible storm.