Scalpie

Scalpie.



That is our pet name for the transducer arrays or scalp device that will be on Jacob's head for the foreseeable future.

Today the device service specialist came to our house and taught us all we need to know about the Novocure TTF (now known as Optune) and after shaving his head down to the nub Jake was ready to strap the pads on.

We learned that the pads work in tandem with each other and that there is a general pattern for placing them on Jake's head according to where his tumor cavities are located. The front and back pads send signals to each other, while the left and right pads send signals to each other blocking the division of malignant cells.

For another friend who asked, the voltage of the charges is 200 kilohertz.

The main impediment to the charges working is heat. The sensors stop working when they achieve temperatures higher than body heat (98 degrees or so) and with AZ summers looming large that may be the biggest obstacle. Keeping cool.

The device also doesn't have an internal power source and runs on either battery power or by being plugged in. It comes with four removable batteries as well as two power cords. So we'll be working on keeping his batteries charged and looking for plugs if we're going somewhere for a long time. 

We clippered him down to a 2, but then our clippers were rotten and I started to nick his skin so he quickly ran to a professional to get his hair buzzed.

I was kind of dumbfounded to see the scars that we've only been able to feel on his head until now. It was sad actually and I felt a great sorrow at seeing the scars from all of the things he has suffered in the last year.

Seeing Jake's scars made me appreciate the fact that Jesus retained His scars after His resurrection. If it was anything like I felt today, it must have made his disciples and the people who saw him remember with gratitude the things He had so recently suffered for them.



 



Here is a more detailed map of Jacob's scars. I've tried to indicate which procedure they're from and left the picture unlocked to expand to full size online. It is interesting that his worst scar is from a microscope burn and not an actual procedure. The laser ablation arrow is just pointing to the general area where they went in, but since it only had one stitch and was a small opening it left no visible scar.

Jake has such a good attitude about this and although he was sad today, he expressed gratitude to live at a time when such a therapy exists. He mentioned that this wasn't an option for GBM patients in the past and he is grateful that it is a treatment option available for him today.

We also talked about how it feels good to be doing something to fight this cancer. Mostly with this disease you take your chemo and live two months at a time hoping that nothing bad is happening, so it is a relief to feel like you're more actively fighting.

Finally, I'll say that this step may be especially hard on our girls. It will change their lives more directly than anything they've experienced so far and draw attention to them in a new way. They are shy and reserved little people and we spent most of the day hearing them out, talking about their fears and feelings, and figuring out things they can say. Thanks to everyone who posted a positive comment on Instagram and Facebook. We read those with the girls, and it helped them. I am grateful that they could be honest with their feelings and hope we are able to guide and encourage them. They're especially in our hearts and in our prayers.

Our next adventure...

So it's a week later and my tears have dried up.

I actually started feeling much better after a hiding in my bed and indulging my misery most of a night/morning all thanks to Jacob getting me up and outdoors, the sun, and the Son.

It also helps me immensely to feel of your love through blog comments, emails, texts, phone calls, food, and thoughtful gestures. I appreciate all that people do to help lift and encourage and love me. Especially before, during, and after those rough days. I really don't mean for the blog to be a call for help, but can I say that it's awesome when people read and respond so quickly?

Truly, thank you all. 

So, who is curious about the Optune scalp device?

Our kids have spring break next week, and then Jacob is set to start wearing it full time on Monday, March 30.

First off, we need to come up with some good tag lines for the thing. You know, the elevator speech or one liner to use as we're out and about and people stare, ask, or are curious about Jacob's new look.

We want to keep it simple. Like saying "brain cancer" (while pointing to the device), "science experiment" (again pointing to the device), or "super charged cerebrum" (signaling the device).

So as you read please comment or email anything that comes to mind. We definitely want to keep people smiling, while also satisfying their curiosity.

Here are a few pictures I took last week as we visited his neurooncologists office. She has the device on a mannequin and it was good to see it in person.







Basically you have these electrodes attached to white adhesive tape that you adhere to your scalp. Then they each have a charge running along them that hooks into a wire. The wires collect in a bunch and run down the back of your neck (hopefully not around your neck as pictured...that would be rather uncomfortable) to plug in to the backpack pictured below. The backpack weighs 6 pounds, and carries the charge that keeps the electrodes running and sending their cancer division blocking signal to the brain.



Seriously, this stuff seems almost too sci-fi to be real.

Since he will have to shave his head completely, Jacob decided to go halfway first so on Monday we clipped him down to a 4. He looks great and is hoping to get some sun on that white scalp.

 

While we were at it, we also clipped this sweet Tommy boy's hair too. He didn't love his first haircut, but made it through. His face is seriously the best.



Many people have inquired after Jake, and want to know how he is feeling. The week after his seizure was rough as he was taking several new medications, in addition to his monthly round of chemo. He felt mentally foggy and physically weak through those days.

In the last week, however, he has been able to go to the gym and have some good workouts, and is feeling much more alert and focused in his thoughts and conversations.

One struggle with this disease is trying to isolate the variables. Is he feeling (insert word here) because of surgery effects, radiation effect, medication side effects, general treatment effect, the tumor cavities, possible new growth, dietary changes, lack of sleep, or because he is a 35 year old husband and father of four?

Most of the time it is impossible to know.

Jake continues to be a wonder to me and I am grateful every day to be by his side.

Crying

Last night I was finally able to cry. A good, heart wrenching, sobbing it all out kind of cry.

It was a little thing that set me off, but once the leak started the floodgates opened up.

I am learning that I am a person who doesn't really cry or emote during the crisis. I am able to stay calm, deal with the facts, and do what needs to be done.

It isn't until days later, when things have calmed down that I start to lose it.

All of my fears, sadness, and torment usually come to a head and spill over.

I am also a person who needs to verbalize the thoughts and fears that come to my mind. If I don't, they are like a poison that threaten to consume me.

So last night I just sobbed and let it all out to Jacob, and today I am going to write some of it out here.

Of course, there was nothing he could say or do other than hold me and tell me that he loves me. This is our reality. We cannot change it. We must deal with it and live each day.

One of the hardest parts for me is that this disease is so incongruent with being young and raising small children.

That is already hard. Anyone with four kids under the age of 10, a mortgage, church responsibilities, and yard work knows what I'm talking about. Life at this stage is already busy and consuming and lots and lots of work.

Then thrown in a horrible brain cancer and it just tips the scales.

Sometimes I feel like we have more in common with elderly people than people our own age. You know, people who've reached the high point in their lives and don't know what the future holds for them, but feel that it definitely isn't great.

I see people our own age advancing in their jobs, buying that bigger home, serving in responsible church callings, making plans for raising their teenagers together.

It feels like their life trajectories are like this

while our life trajectory feels more like this

Whew, it feels good to get that out. Those images have been in my mind for months.

I know that isn't completely true either. None of us know what is going to happen in our lives. That is a reality. We have such little control over anything. We own nothing, we deserve nothing, we are entitled to nothing.

But oh how wonderful it is to live in blissful ignorance of that fact. To think that you can control events in your life and that if you do this or that things will work out according to your plan.

We are the debtors. We owe Him everything for any good that comes into our lives.

I guess that is something to take from this experience while we are young. Knowing that we (especially me, who tends to like to have some sense of control) are not in control of anything.

I read today in Alma chapter 14 about Alma and Amulek watching men, women, and children put to death by fire for believing in God. Then they were stripped, scorned, starved and abandoned in prison for MANY days. Finally, after being smitten by every enemy in the prison the power of God was upon them.

And Alma cried, saying: How long shall we suffer these great afflictions, O Lord? O Lord, give us strength according to our faith which is in Christ, even unto deliverance.

I was grateful to read that Alma cried. That he felt afflicted. And that he prayed for strength and deliverance through his faith in Christ.

It seems to validate my feelings. If a great prophet of God can feel afflicted at times, then its definitely ok for a 34 year old wife and mother in the desert to feel the same way.

Running red lights

People.

Sometimes the fun never ends around here.

Sunday, March 8 at 1:40 am I woke up to a shaking motion in our bed. Once I turned on the light I could see that Jake was having a seizure. This was new territory for me.

My immediate reaction was to panic, but a moment after I felt an overwhelming sense of calm. It came so clearly to my mind that I needed to stay calm and help Jake to be calm. I sat stroking his arm and calmly telling him to breathe, and within moments his seizure had subsided.

I panicked in the few moments that followed, feeling that I was going to pass out and not knowing what to do, when he started seizing a second time.

Again, I felt a sense of calm that overcame me and once the seizure had passed it was clear in my mind the steps I needed to take.

I called a good friend to come over with the kids, as well as 911 to come and transport us to the hospital.

The paramedics came and I explained his condition and that we needed to go to St. Joe's where he is being treated.

We made the drive downtown. Contrary to what you see on tv, they did not let me sit in the back of the ambulance with Jake, but rather I rode in front with the driver.

We got to the hospital and his seizures had subsided with the medication they gave him. He was still pretty out of it and was speaking rather incoherently.

Our previous bishop and good friend followed the ambulance to the hospital and stayed with us until noon the next day when Jake was stable and back to himself.

Our current bishop also came down and helped to give Jake a blessing. That was definitely a turning point of the night. Jake had been pretty lethargic and incoherent and not moving his right side, but after the blessing was administered he came back moving his right side and speaking more clearly.

He was admitted to the hospital and taken up to the neuro ICU around 7:00 am. We stayed there all day as they ran another MRI and did an EEG.

The MRI showed no changes since his procedure on the 23rd, but did show an increase in swelling (edema) in the frontal lobe where the laser ablation occurred. Jake had tapered off of his steroid early and the swelling must have been to much so it triggered the onset of the seizure.

Seizures are a common side effect of the surgery, brain tumors, and brain operations and his oncologist said today she is surprised he hasn't had one before now.

We stayed Sunday night and he was released on Monday morning after doing a few walks around the hall. He was a little unsteady on his feet, but has been regaining his coordination and as of tonight is stable in his movements.

Our wonderful friend Gina and her kids stayed with our girls all day on Sunday, and then our friend Stephanie came to help them and spent the night while we were in the hospital. She was here when we got home on Monday about 11:30 am.

Jake took a nap from 1:00-8:00 pm, slept for 9 hours at night and had another 3 hour nap this afternoon. Sleep seems to be restoring his functions as well and he wakes up with an increase in his faculties every time.

He will now take a seizure medication for the foreseeable future and the doctor doesn't anticipate him having any more seizures in the future.

Jake's brother Matt and his wife Jessica are able to stay with us this week and have been so very helpful. Jake and I are both so tired and recovering from some long nights, and they have been more than kind to help with our kids and the upkeep of our home. I'm so grateful they live here in town.

It was good to speak to his oncologist today and get a better sense that this seizure was a normal, treatable occurrence and that this is not the beginning of the end.

Jake will still start wearing the Optune scalp device at the end of the month and is going to take his next round of chemo starting tonight.

Until then we are grateful to have each other, our kids and another day.

Sometimes I feel like I am stretched so thin and any more occurrences will push me past my breaking point.

But I did not break, and rather felt through that scary night the presence, calm and comfort that only come from Him. I am grateful for His mercy to me and for the help He sent that got me through the night.

I highlighted this scripture on Saturday night before I went to bed and it has been with me through the last few days. It comes from the Book of Mormon, Alma chapter 12 verse 34:

"Therefore, whosoever repenteth, and hardeneth not his heart, he (or she) shall have claim on mercy through mine Only Begotten Son..."

Happy birthday Mom!

Today is my Mom's 60th birthday.

I am grateful every day that she is my mother.



My mom has so many admirable qualities.

She is caring, thoughtful, fun, organized, efficient, brave, classy, stylish, compassionate, a leader, sensitive, friendly, giving, motivated, intelligent, service oriented, and spiritual.



She has given her best to being our mother and my sister, brothers and I are truly the products of her years of investment.



I have several specific memories with my mom growing up.

Most of them are of times when she and I were alone, talking about things that really mattered.

I remember her telling me as a child how she first knew that the church was true and her invitation that I come to know the truth for myself.

I remember a time when she encouraged me during a difficult time at school by sharing her own experiences as a teenager and citing the love and support of her dad as something that helped her through.

I remember another instance when I was an overwhelmed new mother in a new city and she reminded me of God's constant love and her faith in me as a mother, woman, and daughter.



And I can say that especially in this last year of my life she has always been there for me and has, at times, borne the brunt of my despair and sorrow. I know that she hates this experience for me, for Jake and for our kids and that she would give anything to take it away.

But she can't.

However, I also know this.

That it is because she is my mother and taught and trained and instilled the gospel into my very being that I have and will be able to survive whatever comes.

I am who I am because of her and I am grateful today, especially on her 60th birthday, that God sent me to be her child.



I love you Mom.

Happiest of birthdays to you.