March 31. 2014

Jacob has been doing well the last week, so well in fact that sometimes we even forget that he has cancer. He has been cooking, fixing our pool, watching the kids, shooting baskets, and doing the things he's always been able to do. He does get tired and has some nausea, but for the most part he is tolerating the chemo well and following his diet like a champ.

The ketogenic diet is not for wimps. The idea is that for every 1 gram of carbohydrate or protein that you eat, you have 4 grams of fat to go with it. So basically Jacob is living on a diet of heavy cream, oil, and butter with a little bit of food mixed in.  Jake is doing amazingly well with the diet.  He is starving his brain of carbohydrates in an effort to weaken the cancer cells. He will follow this diet for the next 5 weeks, then move to a more modified Atkins/low carb diet in the future. 

I don't think I could do the diet, but Jake says you can do anything when you feel that your life is on the line. He also feels like he has been able to make these dietary changes because he has learned how to control his appetites by living the word of wisdom all his life. He has made countless small decisions to avoid substances that are harmful to his body and become master of what he will and won't consume. I am grateful that he has this control and that living the word of wisdom can bless him in this way.

I am finally at a point where my every thought is not consumed with Jake's GBM (glioblastoma multiforme, aka cancerous brain tumor). For the last two months, I was constantly thinking about this cancer, worrying about it, hating it, and feeling despair because of it. Everywhere I went I would look at the faces if strangers around me, in cars, checking me out at the grocery store, at the park, and be screaming in my head, "my husband has a GBM and our life is over." I noticed that when I went to the grocery store last week I was checking the prices of produce instead if thinking something about GBMs in my head. That is a major step for me.

That said, I still fall into days of self pity and sorrow. It is counterintuitive, but in the times where Jake isn't doing well and things are difficult I can fight it out, but on the days where he is completely well and life is good I often fall into the abyss.

Like last weekend. I don't need to go into the details, but can say that there are days where this is so hard and moments where I can't bear it.  The potential outcome of this disease is my worst nightmare. 

It what seems almost too unlikely to be true,  I have an uncle who passed away from this same cancer just over 10 years ago, when Jake and I were dating. Jake never met my uncle Jon, but has always loved my aunt Carol (my mom's sister) and her four sweet children.

I talked to Carol a few days ago when I was feeling low and she had some good advice for me. She told me that while it is important to make some plans for the future and get things ready, I cannot lose the happy days that are here and the years we will still have by living in the "what if's" and "potential outcomes" of this situation. I have to enjoy and live in the here and now.

That is not something I've ever been good at. I'm a planner. Tried and true to the core. I look to the future and get my ducks in a row. I know that this is how the bad guy is working on me- to get me to obsess about the future that I can't know or control and miss the happy moments of today.

This talk, given by Richard G. Scott, a member of the Quorum of the Twelve Apostles just 5 months after his wife passed away, was very helpful to me this weekend. As was this one, given in the last general conference. I'm not there yet, but am grateful for the wisdom and perspective that these talks offered me.

I am also most grateful for Jacob. One of the best parts of our marriage is that we have always been able to communicate with each other about everything and help each other through anything. I can say that he has been such a guide for me through these months and helped me more than anyone by giving me hope, perspective, encouragement, and a calm assurance that although we don't know how this will play out, no matter what happens, our family will be ok.

We have happy events in the next week. Our kids had a lovely spring break, Jacob's birthday is on Friday, General Conference is this weekend, Jake's returning to work, and I have a few surprises up my sleeve.

And today was a good day.

March 25, 2014

I asked Jake to give a little update on how he is doing, as I know there are many people who are interested.  Here's his update:

Post-operative treatment at the Barrow Neurological Institute is underway (we switched my care from Mayo after their neurosurgeons didn't think they could safely remove the tumor).  This latest round of treatment got off to a bit of a rocky start as my body got hit with the trifecta of an extreme diet change, radiation and chemotherapy all at the same time.  On Wednesday afternoon, I started a strict ketogenic diet under the supervision of the oncology dietician.  After drinking only gross shakes Wednesday night and all day Thursday, my body went into ketosis before the GammaKnife procedure on Friday.  (The dietician said that that was the fastest she's ever seen anyone go into ketosis -- it usually it takes a week or at least 3-4 days).

On Friday, Jordan and I woke up at 4:30 a.m. for the GammaKnife radiosurgery.  After the usual pre-surgery screening, they wheeled me to the GammaKnife center where they screwed a frame onto my skull. Then they did an MRI.  The doctors (neurosurgeon, neuro-radiologist, and physicist) then planned the procedure for about the next hour and a half while I watched basketball with the head frame on.  It reminded me of wearing a lacrosse helmet.  The procedure took a little over an hour.  For the procedure, they attach the head frame to the machine and move you into a tube, similar to an MRI. Here is a good video overview if you're interested in the nitty gritty.  Unless and until there is a recurrence, this is all the radiation I will be getting.

On Friday night, my head was killing from the head frame pin sites.  Right before bedtime, I started having involuntary twitches in my right leg and hand, probably from brain swelling due to the GammaKnife.  They didn't prescribe me steroids (which keeps brain swelling down) after the procedure because I was doing fine.  I decided if the twitching kept acting up, I would call so they could give me the prescription.  With my head killing and my right side spazzing out, I had to start my temozolomide chemotherapy pills.  To top it off, Thomas was having a horrible night.  Unsurprisingly, I hardly slept at all that night.  I couldn't tell if it was my headache, nausea from the chemotherapy pills, nausea from the rapid ascent into ketosis, my twitches or Tommy's screams that were keeping me up.

Saturday was better.  No more twitches.  The headache subsided. I was able to get a nap in the morning and watch basketball most of the day.  Despite the improvements, I did feel uneasy and nauseous all day.  In the middle of dinner, I threw up pretty much everything I had eaten for the past day and a half.  That was the turning point.  I felt immediately better.  The dietician told me to take a step back from the diet for that night.  Sunday I felt good enough to get back on the diet and was able to stay in ketosis.  That day I rested and did nothing else.

Each day gets a little bit better. Today I was back to shooting baskets.  A line from an Alejandro Sanz song has been running through my head lately: "despues de la tormenta siempre llega la calma."  (After the storm the calm always arrives).  After each little tempest we've always had a period of calm.  Starting treatment has been the latest little storm, and fortunately I'm recovering beautifully.  I attribute it to all the kind thoughts and prayers on my behalf.  Words cannot express how humbled and grateful I am for all the support our family has received.

March 21, 2014

Tuesday, March 18 we met with all of Jacob’s doctors (neuroradiologist, neurooncologist, neurosurgeon) and finalized our decisions about his treatment regimen. The tumor is out, and now it is time to try to kill any remaining cancer cells. We decided to do a one time GammaKnife radiation therapy to the tumor cavity and margins rather than a six-week wide field radiation regimen. The GammaKnife procedure is happening today, March 21.

Chemotherapy started at the time of surgery (the surgeon implanted wafers in the tumor cavity) but begins in earnest tonight with temozolomide, which is the standard oral chemotherapy for these types of tumors.  Supposedly this chemotherapy is “well tolerated.”  He doesn’t have to do any ports or infused chemo and won’t lose his hair.  He’ll just take pills every night for 6 weeks that happen to come in a biohazard bag when you pick them up from the pharmacy. 

Jake has also decided to go on a ketogenic diet under the supervision of the oncology dietician.  They are doing a study with that diet here that has shown some promise in the laboratory.  He’s not officially on the study because he is doing an alternative radiation therapy.  The idea of the study is that brain cells feed off of glucose, so you starve the brain of glucose, by feeding your body proteins and no carbohydrates, to weaken the cells during the 6 weeks of treatment to make the medications and radiation more effective in killing the cancer. The rest of the body knows how to convert fats and proteins into energy, but the cancer cells in the brain aren’t as effective in making the conversion and are weakened as they receive little to no energy and killed through the medication and radiation.

After this first round of treatment he will have a month off to recover.  At the end of that month, he will continue to take the oral chemo pill, for five consecutive days at the beginning of each month for a year. Jake will also have MRI scans to watch for a recurrence. He will have an MRI after the initial treatments, and then every two months after that. Jake plans to return to work at the end of the month.   

These last two months have been the most difficult of our lives. We have felt helpless as we’ve grappled with his diagnosis and all that thoughts, feelings, and emotions that accompany it. We have had no control over our life, and no idea of what would be happening from one day to the next.  

But with the surgery over and the treatments underway we feel like we can breathe. We feel like there is a plan in place, we have some say in that plan, and we know what is on tap for the coming week.  We feel like we are getting our life back.

A friend with a metastatic breast cancer told us that with cancer you develop a “new normal.” I think that phrase is fitting, and something that we are starting to experience. After the last 8 weeks of crazy ups and down and unpredictability, all we want is to return to regular life. To have Jake go to work. To have our girls go to school, piano lessons, and play with friends. To clean our house, play outside, and attend to church on the weekends. To get back into the comfort of a routine. 

Again, we cannot adequately express our gratitude for the support, strength, prayers, and love that we’ve felt from all of you. It has carried us through the days and weeks when we couldn’t cope on our own. Phase one of this experience is coming to a close. Jake describes this experience as a marathon, and we’ve heard the starting gun and crossed the line of no return. 

Picture taken March 19, 2014

Now there is a race to be run and as a family we are moving forward. We hope that Jake never has a recurrence (although recurrences are almost inevitable with this type of tumor and have their own treatment options) but want to know that when he does we have done everything in our power, trusting in the will of God.  We echo Paul’s statement in Hebrews 12: 1-2 and aspire to “run with patience, the race that is set before us, looking unto Jesus the author and finisher of our faith.” 

March 15, 2014

Jake is recovering well from his surgery last week.  The surgery was a success in that the neurosurgeon was able to remove all but a few traces of the tumor.  He feels mostly back to his pre-surgery self.  He has even been to the park to shoot baskets. He will start radiation treatment and chemotherapy next week. We are extremely grateful to everyone who has reached out to us and helped us in so many ways. Thank you so very much.

March 7, 2014

Before you read any further, be aware that this is not an inspirational post. I, Jordan, am writing and the feelings expressed are mine alone. Jacob and I both process this in different ways and at different times and I can only speak from my own recent experience.

We arrived at the hospital on Monday and Jake had a successful surgery. He woke up, remembered me, was able to speak and move all of his body parts, and was for all intents and purposes doing well.

And then in came the parade of doctors. Through the next 2 days we met with at least 8 different doctors, specialist, residents, and therapists.  Each one would come into the room, look at us with “the look,” ask Jake if he’d spoken with the surgeon and if he knew about his condition.

His condition of grade 4 glioblastoma primary brain cancer, which has a terrible prognosis, an almost sure chance of recurrence, and no known cure. Google it if you want your stomach to turn and your blood to run cold.

Yes, we are aware of his condition. Thanks for the reminder.

I must say that I am grateful for every medical professional that has and will work with Jake. They have committed their lives to a practice that will extend his days and I cannot but feel gratitude for their expertise. But they have a sucky job. Telling people the news that they delivered to us has to be completely horrible.

By the time we met with the palliative care doctor who talked to us about hospice I was at the end of my rope.  It was as if all the hope in my soul was sucked up in a vacuum and I left the hospital with a dark cloud hanging over my head.

The next two days were not much better.

I felt an overwhelming sense of despair, sadness, and anger. These feelings threatened to consume me. I was able to meet with some of our church leaders and lay some of this burden at their feet. I also spoke with some family members and told them about the dark roads my mind and heart were walking. Jacob received a beautiful blessing from his father which brought a measure of peace to my tortured soul.

The hardest realization I’ve come to in these days has been that my life, as I knew it, is over. I’ve always wanted this crazy train to stop and things to get back to normal. But they never will. All of the choices that I made to get me to this point, the sacrifices, the effort and hard work seem to be in vain as the life Jacob and I have been building together for almost 10 years has been ripped out from under us.  I am 33 years old, a wife with 4 young children and my future looks so bleak.

I always thought I had an understanding of what Jesus Christ suffered for me. But I actually had no idea. In the Doctrine and Covenants, the Savior describes his suffering as sore- how sore you know not, how exquisite you know not, yea, how hard to bear you know not. If what I have felt in the last few days has opened my eyes to the sore, exquisite, and hard to bear suffering that He went through for me, not to mention the rest of humankind, I stand at the precipice and marvel at the sheer agony of His experience. No wonder He says 

"Which ^asuffering caused myself, even God, the greatest of all, to tremble because of pain, and to bleed at every pore, and to suffer both body and spirit—and would that I might ^bnot drink the bitter cup, and shrink—"

I can relate to His feeling. I would that I might not drink this bitter cup. I feel that I might shrink before the task in front of me.

However, Christ finishes relating His experience by saying

 

"Nevertheless, glory be to the Father, and I partook and ^afinished my preparations unto the children of men."

I only hope that someday I can be ready, and willing, to say the same.

March 3, 2014

Jacob finished surgery at 3:00 pm and had a successful total gross resection. He has full functions and I am in the ICU talking to him. He thanks you for your faith and prayers in his behalf. He just proof read this message and approved.

I like to look for rainbows

On Saturday, our oldest daughter Lauren was baptized into the Church of Jesus Christ of Latter-day Saints. It was such a wonderful, happy day and she was so excited to take this important step in her life. We were grateful that many of our family members and friends could come and share this special event with us. Jake performed the baptism and confirmed her a member of the church and gave her the gift of the Holy Ghost.



As we were talking with our girls tonight, Lauren said that she was grateful that Jake's surgery was after her baptism and confirmation, because she now has the gift of the Holy Ghost to help her when she feels worried about his surgery tomorrow. We believe that this gift is the privilege of enjoying the constant companionship of the Holy Ghost and are so grateful that our little girl has the promise to be comforted by that constant companionship tomorrow, and throughout her life.


One of Lauren's favorite songs is called When I am Baptized and we sung it as part of her baptismal service. The words are as follows:

I like to look for rainbows whenever there is rain

And ponder on the beauty of an earth made clean again.

I want my life to be as clean as earth right after rain.

I want to be the best I can and live with God again.

 

I know when I am baptized my wrongs are washed away, 

And I can be forgiven and improve myself each day

I want my life to be as clean as earth right after rain.

I want to be the best I can and live with God again.

In a usually sunny desert, Lauren's baptism day dawned with big clouds in the sky. Throughout the day the rain poured down in droves and filled the usually empty reservoirs of the desert. The rain had dissipated by the time we left to drive to the church, and stayed at bay during the baptismal service and for us to take pictures after the baptism. 


Our dear friend Nelly attend the baptism and went out into the hallway with her son during the service. While there, she looked out the window and saw two beautiful rainbows in the sky. She took this picture and wrote to us how "it came to me that those rainbows were for our friends Jordan and Jake."

I had a similar thought as we were driving to church today. The sun was shining and the earth was clean again. I commented to Lauren that we had experienced the words of her favorite song. Although her baptism day was filled with rain, the Lord had sent a rainbow and made the earth clean again.


We do not know what storms lie ahead for our family. Jacob has surgery tomorrow, and will then undergo treatments of various kinds for weeks to come. We cannot predict what changes, or hardships, or trials will enter our lives. 


But we can choose to look for rainbows. The small things that will give us hope, that will lift us up, and that will give us courage as we move ahead. I know that no matter fierceness of the storm, God will always send a rainbow. He made that promise to Noah and it is still in force today. We are grateful for the knowlege that He who is master of the elements stands at the helm and will help us, our children, and our families by sending rainbows.