The Diagnosis - Why Not Me?

We recently met with the doctors at the Mayo Clinic and the Barrow Neurological Institute, who were able to make a definitive diagnosis of glioblastoma (also known as a grade IV astrocytoma). We were hoping it wouldn't be cancer and certainly not one of this variety. Fortunately, the tumor is relatively small and can be removed by surgery, which will occur next Monday.

This whole process has been gut wrenching to say the least. The odds of getting this disease are astronomical.  Early on, we decided that rather than question "why me?" we would adopt the motto "why not me?" We both feel that we have led such fortunate lives.  Everyone has bad things happen in their lives, so why should we be exempt?  People much better than us have suffered from the same or much worse maladies.  So, "why not me?"

The question of “why not me” has a flip side.  We already hit the cancer lottery, so “why not me” when it comes to overcoming the odds and becoming a long term survivor.  Several indicators of a relatively good prognosis are there for us (for example, it can be completely removed, there aren’t any significant neurological symptoms, and the diagnosis occurred at a relatively young age). We are also part of a cutting-edge clinical trial at Barrow.  So "why not me"?

Regardless of how this plays out, we are grateful to God for all the small blessings along the way.  There have been more blessings than we can describe here.  We are also so grateful for every single kindness, prayer, thought, and expression of hope and concern.  We haven’t been able to interact with and respond to everyone as much as we would like, but please know that we are grateful beyond words to all who have showed kindness, expressed support, thought about us, prayed for us, helped us connect with doctors, sent us stuff, put our names on the temple rolls, etc. Jordan and I could not get through this without you.

February 20, 2014

Jake told me to write a list of all of his positive qualities while I waited for him in surgery to give me something to do.

He's going to get what he asked for and more because I'd love any of you to add to my list.

Or share any anecdotal stories you have with him (think back left pocket...)

Then when he wakes up he can read all about what people really think of him. ;)

I could write 500 things, but will limit myself today to 10.

First, let's talk about his name. It is the best man name around. He was named Jacob and is called that my all of his family members. But in elementary school friends started calling him Jake and it stuck. I knew him first as Jake, but when I'm around his family for extended periods of time find myself calling him Jacob. I've asked him many times which he prefers and he says that he honestly feels like he is both. So no matter if he is Jacob or Jake to you he is one all around wonderful kind of guy.

Second, he is smart as heck. He is a researcher like no other and knows something about everything. He processes information so well and has a unique ability to perceive truth.

Third, he is so handsome. Those blue eyes, dimpled smile, sandy blonde hair, I'll spare him further embarrassment, but truth be told he is one good looking man.

Fourth, he is generous. He loves to give gifts, help people in need, and sacrifice his time to make other people happy. He thinks about other people every day and will give of himself to help others.

Fifth, he is strong. When we went to Europe a few years ago, I was amazed every day by his ability to go full throttle on little sleep, little food, and after full days of physical exhaustion. He is truly tough and has a core of steel.

Sixth, he has a great sense of humor. He has an understated way of seeing the irony in situations, not taking things too seriously, and finding humor in everyday life. He makes me laugh every day.

Seventh, he has a gentle soul. He always feels compassion for others who suffer and is the sweetest father to girls that I have ever seen. He has an ability to mourn with those that mourn because of his loving and gentle nature.

Eighth, he is a hard worker. When he sets his mind to something, he WILL do it no matter what. He is not afraid to put in the time or effort to do something right and he will not give up until the project, paper, experience, etc. is done.

Ninth, he is an athlete and true BYU blue. He has loved sports since he was a little boy, reading the box scores in the paper, and has played almost every team sport possible. He loves the BYU cougars and finds great joy in pursuing his hobby of following the football and basketball seasons each year.

Tenth, when Jacob prays I know that he is talking to God. We have made it a ritual in our marriage to end the day kneeling in prayer together. We take turns every night offering the prayer, and my favorite days are the ones where I can listen to him pray. He says that he learned to pray as a little boy and since then, no matter what, he cannot go to sleep without offering a prayer. I know that Jake knows he is speaking with Heavenly Father, and that Heavenly Father hears and answers his prayers.

February 18, 2014

Three weeks and five days.

That's how long we've known that there is something in Jacob's brain, but not exactly what it is.

The possibilities range from a high grade glioma to a congenital lesion with swelling.

I think we've all thought "I don't know what I'd do in such a situation."

I can now say that you handle it exactly like you'd imagine.

You have up days and down days. Up hours and down hours even.

You go through scenarios.

People tell you not to without the facts, but with three weeks and five days to think about it, you can't help it.

You cry.

You laugh.

You fear.

You have faith.

You ride the roller coaster.

Tomorrow we have a pre-surgery consultation with the neurosurgeon.

Thursday Jake will have a brain biopsy.

The doctor told us that brain pathology is the hardest to read and it may take a week before they have any results.

If they get conclusive results.

So we will continue to wait.

I have felt the reality of the atonement of Jesus Christ in receiving forgiveness from sin, in having ability and capacity beyond my own, and in finding answers throughout my life.

But never before have I felt the total and complete power of the Savior to offer comfort in a way that overpowers me.

I know that He has given the angels charge over us.

These angels are both seen and unseen.

They have given us food, treats, gifts, encouraging words, prayers, positive thoughts, hugs, phone calls, texts, messages, packages, babysitting, house and yard care, hope, and love exhibited in every form of the word.

In John 14:18 Jesus says, "I will not leave you comfortless: I will come to you."

He has come to us and I now know with a surety that His ability and promise to comfort is real.

February 12, 2014

Here's Jake's report from today's appointments:

" Today I met with my neurooncologist and neurosurgeon.  The neurooncologist did a thorough neurological test, which came back perfect. No apparent impairment.  Also, my EEG came back normal.  She said that if this is a tumor, it is unusual for symptoms to resolve themselves.  The dizziness and numbness in my hand have all but disappeared after getting some rest.  When asked what the mass was, she said she didn’t know.  She recommended a biopsy.  The neurosurgeon on the other hand said that it looked like a cancerous tumor but that we don’t know for certain until they do a pathology on the mass’s tissue.  He recommended a biopsy.  He said the biopsy procedure is pretty routine and not very invasive, with the caveat that there are always risks to surgery, especially brain surgery.  Given the location and shape of the tumor, he recommended against attempting a removal of the whole mass.  I have pre-surgery appointments and testing next Monday and Wednesday, with the surgery on Thursday.  I’m humbled and very grateful for all the thoughts, prayers and well wishes for my family and me.  They have definitely sustained us through this difficult time."

February 10, 2014

Today we went back to the Mayo Clinic Hospital.

Jake had an EEG or brain wave study at 8:00 am that lasted until 9:35 am.

Prior to the study they only wanted him to have four hours of sleep, so he slept from 2:00am - 6:00 am.

He laid on a cart and had metal discs attached to his head with a toothpaste like substance and then completed the test. They asked him questions, let him rest, and shined bright lights into his closed and open eyes.

We came home after that and he had a nice long nap.

At 2:00 pm we left to the outpatient Mayo Clinic facility where we met with a pulmonologist. In the full body CT scan they found some very very small less than a millimeter nodules in Jacob's lungs and wanted to be extra sure that they were nothing.

Thankfully, they are nothing.

The pulmonologist said he could barely even see what they were referring to on his scans and wished us luck in the real diagnosis ahead.

Thankfully, Jacob's first round of appointments were pain and stress free.

Wednesday is the big day. We will meet with the neurosurgeon and the neurooncologist and hear what they have to say about the growth, about a biopsy, about treatment plans, and hopefully get some answers to all of our questions.

Jacob's parents came down last Friday and will stay for as long as we need them. They are completely wonderful. They have been willing to do anything, they help in every way, and their presence is such a strength to both of us. They are the two people, next to myself, who love Jacob the most and I am so very grateful that they can be here and are willing to go through this experience with us.

I cannot express adequately in words how grateful we are for the support, prayers, love, and concern of so many of you. Every night before we go to bed we talk about the kind things people write, say, do, and communicate to us and it brings us to tears to feel so much love from those around us.

My mother in law quoted this scripture that I often find myself thinking of. It is from the Doctrine and Covenants section 121 and states:

7 My son, ^apeace be unto thy soul; thine ^badversity and thine afflictions shall be but a ^csmall moment;

 8 And then, if thou ^aendure it well, God shall exalt thee on high; thou shalt triumph over all thy ^bfoes.

 9 Thy ^afriends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.

 10 Thou art not yet as Job; thy ^afriends do not contend against thee, neither charge thee with transgression, as they did Job.

We are not yet as Job and are grateful every day for our family and friends who stand by us and serve us with warm hearts and friendly hands.

Family and friends are a blessing from God.

February 6, 2014

Sunday the 2nd was wonderful.

We felt the spirit so strongly and were uplifted by the fasting and prayers of so many people.

Then Monday and Tuesday the bad guy came.

That is the best way to describe it.

Personally, I started to feel the sick/worried/dread/sad/fearful feelings of the initial shock of it all and was starting to descend into the not so awesome zone.

Lest anyone think that we are handling this well just know:

This is hard.

It totally sucks.

Honestly, we hate it.

However, Wednesday the sun came out, Jake had lunch with some of his wonderful work friends, we received a meal that night and freezer meals for hard days in the future, our neighbors brought us oranges from their tree, our kids started to get better from their colds (each one has been sick and home from school for a week), and we were able to attend the temple today.

I can't describe it any better than to say that the pendulum started to swing the other way and we somehow felt better.

Jake's brother Matt has been with us all week, after interviewing for the MBA program at ASU, and has been such a wonderful help, support, and strength to us. He's been willing to do anything we need whenever we need it and has answered our prayers in many ways.

His sweet wife Jessica has been so supportive of him being here and we appreciate her sacrifice for us.

Somehow we keep busy with things. Jake helps a lot with the kids, finalized our estate plan, visited the dentist, has orchestrated needed home repairs, and has had good conversations with many family members and friends.

We both have a nap almost every day.

Jake isn't working or driving, but he is keeping up with BYU basketball and the recruiting season. 

We've been able to go to school to eat with the girls and spend time with them as they've been recuperating from a cold/flu/earaches at home. We are planning Lauren's birthday party and getting ready to celebrate her turning 8.

I feel two ways about this waiting period. It is nice not to know what we are facing, because once we know what this growth is and how strong it is there is no going back.

But it is also hard not to know what our enemy is because we can't develop a battle plan for it. Matt described it like swinging our sword in the air. It is hard to gear up for the fight when you don't even know what you are fighting. 

I know that we are surviving on prayers. There is no other explanation for it.

We want to find out what this is. We hope for the best possible prognosis. We desire this to be something that can be fixed and healed.  We desire courage to hear what the doctors have to say. We pray for insight in understanding the brain and in making decisions. We need our children to be comforted and at peace as we process everything and we need knowledge and strength in communicating with them.

At the end of the day I remain hopeful and do feel more moments of peace than of fear. Jacob is so strong, so wise, and has such good perspective about this and inspires me daily in how he is facing this trial. He is strong and he is a fighter and above all he has a solid faith at his foundation.

February 1, 2013

Tonight I write with a sense of calm and hope.

I know that many of our family and friends have begun their fast for Jake and we can feel that their sacrifice and prayers have already started to descend upon our home, our children, and both of us.

I am so grateful for fasting and the blessing it is for us to sacrifice something we need for the benefit of others.

We have had time the last few days to talk to many people that we love. The initial shock of the situation made it hard to communicate with others, but in the last few days both of us have enjoyed talking with family and friends on the phone, through social media, and at our home.

We are grateful for those who have reached out to us.  It has been therapeutic to talk about what has happened so far and feel the love of other people. We welcome communication and open up our hearts and home to hear from you.

If we can't talk right then we won't. If it is too much, just leave a message and we'll call you back. We welcome just your positive thoughts and feelings and are so appreciative of them.

Gratefully, life has a rhythm that is calming and necessary. We still have laundry to do, dishes to wash, meals to prepare. I've been one to resent the monotony of such daily tasks, but this week they have provided a calming practice that has helped me feel like life is normal and routine. There is also a measure of mind numbing in doing daily chores and tasks that has been a blessing and a welcome distraction.

We have become aware of others in our extended family and circles of friends who are also going through difficult experiences and feel more sympathy for them then was possible a week ago.  Facing your own personal trials does increase your understanding and compassion for the suffering of others.

Finally, we have come to appreciate that the Sunday school answers do provide peace and security in your daily life. Reading scriptures, praying, serving others, attending church, keeping the commandments, etc. really are the substance of our lives and everything else pales in comparison.

Before this experience, we were often distracted with the unimportant things of life that got in the way of doing these essential things. But in the last week have found real peace as we've prayed individually, with our children, and with each other. We've had insights as we've read and pondered the scriptures as a family and individually. We felt the spirit as we held our Family Home Evening. We were able to forget ourselves as we served others and tried to choose the right.

I read a quotation that has been with me for the last few days. It said "although we cannot always control what happens to us, we can always choose our response. Herein lies the power of our agency."

A good friend also wrote to us that "God purifies you and I to the point that He can see His image in our countenance. And we aren't hurt in the process, rather we become like Him."

I am grateful for the lessons that we are learning in these days and for the chance they have, if we allow them, to make us more like Jesus.