2018 Team Jarem Support for the Huntsman Cancer Institute

Friends and Family,

Last year many people rallied together to form “Team Jarem” in conjunction with the Huntsman 140, a fundraising event for the Huntsman Cancer Institute in Salt Lake.  Throughout the year it ballooned into an even larger effort which was touching and inspiring for our family on many different levels.  Here is a highlight video of the 2017 event that some friends from work put together https://www.youtube.com/watch?v=CXZJS_f0Jjo&feature=youtu.be.
Several of my friends from work at TruHearing are again launching a “2018 Team Jarem” and I wanted to invite you to participate in any way that you feel inclined.  Also, feel free to share this email with others you think would want to participate in some way including companies that have corporate giving goals or would want to “sponsor” the team or the event in some way (I’m happy to speak with them directly if that is helpful).  We have an ambition goal of raising $50k this year.
Here are some ways to get involved:
Camilla and I never imagined we’d be in this position or that fighting cancer would become a passionate / critical cause in our lives.  That said, we have become better people through it all because of your love, support, faith, service, and unending desire to “love one another, even as [the Savior] has loved you.”
Thank you.  Thank you.  Thank you.
Jarem, Camilla, and the kids
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Helpless musings from a chemo stall

At the chemo shop this afternoon getting an immunotherapy infusion (Erbitux / Cetuximab). I’ve got it easy today, physically. Some heavy fatigue is loaded in the chamber and aimed at me for the next 36 hours but that just means I’m hunkering down and binge watching Parks and Rec for the second time through. Like I said, I’ve got it easy.

That’s not the case for this woman in the stall next to me. When I walked in to pick my chair (with my new limp / strut that my nurse Ty just called my cancer swagger), she was curled up crying. She is probably 50. She looks 75. Smooth bald head hidden under one of the knit beanies they give you in the waiting room. I bet 2 years ago she was a beautiful normal looking woman and now she’s been reduced to what could be mistaken as a meth head on her last leg. I still think she is beautiful. Scars and skinny limbs are cool in my book. Her courage is hidden underneath the horrible cloud of what chemo does to you physically and emotionally. But it’s there. She is a fighter that’s been pummeled and is face down on the mat, but she is still in the ring and in the fight. Sheesh, what type of “treatment” must she be on.

It’s not a situation where I feel like going over and giving her a hug or a fist bump or tell her some encouraging cliche. This a deal where you recognize the sadness and sacredness and utter loneliness of suffering. You bow your head. You whisper a prayer asking for some relief to get to her, rápido por favor. You whisper a prayer of gratitude that today isn’t your day to be wrung out and you beg for the strength to get ready for when it is your turn.

It is helpless. I couldn’t keep watching. I had to boom the Hamilton soundtrack through my ear buds and thumb a quick blog post from my phone. Helpless. God bless her. Now she is waiting for a transport to get to the hospital for a blood transfusion. She has some fluids (and hopefully some morphine) flowing in the IV right. Looks a little more comfortable or less miserable. What a boss. Whew, she just fell asleep. They definitely slipped a little morphine in there. Bless them. Bless her.

We all prefer to feel strength rather than weakness. Weakness introduces all sorts of negative emotions — frustration, anxiety, fear, anger, disappointment. If we own that weakness and don’t ignore it or sweep it under the rug it can also introduce humility. It can be the spotlight that perfectly accentuates a power in our lives that is not innate. It is other worldly. It is celestial. Man, I hope that is how she is feeling it. Weakness is the ultimate two-edged sword. She just woke up to listen to some nurses instructions and she forced a smile. I think she is feeling it right. I wonder how long she has left.

I’m glad it’s not my time yet. Obviously I have no choice or control. None of us do. But I’m ready for this next run. Maybe Lin-Manuel Miranda just has me jacked up on his genius lyrics. I have to remember I’ll be bedridden within the next four hours, no question. But that seems like a long ways a way.

What a Friday afternoon at the chemo shop. Thank you sweet sister for forcing me to think and ponder and embrace all of this, all at the expense of your suffering. Hope to see you next Friday, sister. Fight on.

Post surgery update and “Waiting on the Lord” (2 of 2)

The purpose of our life on earth is to grow, develop, and be strengthened through our own experiences. How do we do this? The scriptures give us an answer in one simple phrase: we “wait upon the Lord.”                                     – Robert D. Hales

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.                                                                                                      – Isaiah 40:31

Home

The comfort I felt upon coming home from the hospital Tuesday night March 13th was immediate.  I always have a longing to be home.  I’ve traveled quite a bit during my career, but even still, most trips involve a tinge of homesickness.  As Camilla and I pulled into the driveway that evening, the kids came running out of the door and my Bishop and his wife pulled up at the same time with some dinner.  No joke.

At that point I couldn’t put any weight on my left foot and needed to get up about 20 stairs to my room.  My Bishop picked me up in a cradle and carried me up all of those stairs and placed me in my bed.  I was still wearing my sunglasses and didn’t take them off so that he couldn’t see my red eyes tearing up.  Think about all of the symbolism of my first five minutes at home.

The physical recovery in my mind is broken down into 3 parts

  1. The leg
  2. The arm
  3. The jaw / mouth

The leg is sore and it aches and occasionally throbs.  I have worked hard with a physical therapist that has come to the house 4 times in my first two weeks home and I do a variety of exercises several times a day.  I’ve also had a “massage therapist” work with me three different times.  This isn’t like a nice relaxing massage.  The therapist digs her fingers into the calf, ankle, and hamstring that have all seized up and the stretches my legs and shoulders until I can’t take it any longer.  I usually end the “massage” in a sweat but feeling a lot more mobile.  The first five days I was able to use a walker 75% of the time and a wheel chair 25% of the time.  The next three days I was 100% walker and then a week ago I swore that off entirely.  Since last Saturday I’ve been progressed from shuffle to a modified step to a limp to now what I would consider my new strut.  I’m coming for you Hunstman Cancer Institute 5k on June 16!

The arm is just like I remember from the January 2017 surgery.  It is painful and has left me with almost no mobility in my wrist for now.  It is gross looking and will probably take the longest of all the wounds to properly heal.  But I’m able to use my right hand with increasing dexterity and I think sometime next week I will stop wrapping the arm so skin graft can get some fresh air and the world can enjoy seeing the wound in all its gnarliness.

The jaw and mouth remained HUGELY swollen for about 2.5 weeks.  I looked like Martin Short on Pure Luck when he gets stung by a bee:

bee sting

But even the swelling has come down significantly the past 4-5 days.  I would estimate that 70-80% of the swelling has gone away now.  The mobility in my jaw is quite limited which impacts my ability to swallow and talk and smile and just about everything else involving my face.  I have a bunch of Popsicle sticks that I stack together and then wedge between my teeth to try and pry the jaw open a little at a time.  The most I’ve been able to do so far is 12 sticks compared to about 8 sticks when I started.  I am mostly using the feeding tube right now for nutrition but I eat some eggs every day as well as some jello or pudding.

Swallowing is a big challenge and probably will be for some time.  It gets frustrating to not be able to eat what I want and not to be able to chew and to gag on just about everything including a drink of water.  I was really discouraged about 10 days ago but have kept at it and am doing a lot better now.

That is how most of this experience has been — I’m making progress but it requires patience and some long-suffering.  I certainly have learned how to take a whooping and to know that the beating will eventually end and then the recovery will start.  I have learned and continue to learn how to “Wait Upon the Lord.”

In the past three weeks since surgery I’ve gone through a hundred cycles of ups and downs.  A darkness so intense that it leaves a taste in your mouth slowly dissipates as a peaceful light fills your heart and mind.  And then the process repeats.  I’ve tried to become more steady and even keel and not let my emotions swing to the extremes.  But in times of crisis that is tough to do and so I’ve been on a bit of a roller coaster.  And I think that’s okay as long as you don’t get off the ride and you stick with it during the ups and the downs.

Wait.  Submit.  Develop patience.  Take a chill pill (or another calming pill of your choice).  Trust.  Suffer long.  Appreciate.  These are all the things that I find myself holding on to.  And for the most part it seems to be working.

I continue to be humbled the ongoing support I feel individually and my family feels as we continue walking down this path.  We are coming up on 2.5 years since my initial diagnosis and 18 months since it came back.  I, myself, at times feel worn out and a little monotonous when praying that the cancer will go into remission and my life will be prolonged.  And yet there are texts that I still receive regularly from people sharing an experience they had praying for me or hearing their children pray for me (many of whom have never met me).  I received letters, emails, texts, and packages that encourage me and remind me that I am not alone.  Not even close.

I often feel guilty as I doubt that my own faith is keeping pace with those who are in my corner fighting this disease with me.

I don’t really know what the solution is except to be grateful and try to serve others in what ever small capacity I am able and to continue to be aware of it and think about it.  Serving has always felt more comfortable to me than being served, but that is driven mostly by pride and ego and so I have to concede that being in this position is an ever-present opportunity to be humbled.

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Roman always takes advantage of a captive audience with some serious dinosaur play time. Also, our bed has been a total life saver. The amazingly generous people at Sealy Tempurpedic gave us their highest end bed complete with an adjustable base, mattress, and massage settings. And special thanks to Mike Piepgrass who made it happen.
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Sofie helping me get ready for church. First time I can remember wearing shorts to church. #blessed
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This is about 20 days post surgery. The large patch of tissue was removed with the arteries that run up the forearm and used to cover part of the jaw that was removed.
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Part of the fibula and blood vessels in the left leg were removed and used to rebuild the jaw.
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This is the scar on the right side of my neck. This is the third time that this side of the neck has been cut open. I joked with the surgeon that they should install a zipper for easier access next time. Hopefully there is no “next time” 🙂
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This is the scar on the left side of the neck. This is the first time they have done a full neck dissection but I’m now a mostly symmetrical specimen with scars on both sides of the neck and scars on both forearms.

Post surgery update and “Waiting on the Lord” (1 of 2)

[decided to share this in two posts because of how much there is to share and how long it takes me to type with this ridiculous cast!]

Where to even start this post, I do not know.  The nasty, gory stuff is probably the most interesting so I’ll indulge that curiosity first.

But first, here is picture I snapped with my hot nurse right before being wheeled away to the operating room.  Camilla is SUPERWOMAN.  She “slept” at the hospital every night with me and kept me as calm and comfortable as possible.  Since coming home from the hospital on March 13th she’s been a nurse 24/7 by changing bandages, carrying me from the bed to the bathroom, managing my feeding tube, and grinding up and administering medications every four hours.

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And just to repeat what I’ve said before, I hope that no one reads this post and leaves with feelings of pity.  The point of writing so openly about our story isn’t to fish for sympathy.  The reason for continuing to blog is to accentuate the Light that shines brightest when enduring challenges, and to inspire us all (myself included!) to TRUST GOD no matter what.  I just wanted to reiterate that point in case this post comes across as pretty miserable.  It has been a miserable two weeks post surgery, no question.  But things are looking up and we will come through this chapter of the experience stronger and more dedicated.

Surgical report

the operation

This was a tough, complicated surgery.  When they wheeled me into the operating room there were about a dozen nurses and surgical assistants buzzing around the room with my two regal surgeons prepping themselves, one of whom was actually reviewing some notes on what looked like a very worn text book.  It took the two surgeons and their teams six hours to harvest a free radial flap from one arm and a bone from one leg and graft all the tissue through micro vascular reconstruction into the part of my face that is was damaged from radiation treatment.  There is a metal plate in there somewhere too, and another skin graft from my thigh to help cover everything back up.  All that plus 50-60 staples and I was pieced back together.

Coming out of the operating room, both surgeons talked with Camilla about how well they felt like the surgery went.  I’m sure they try to share positivity and encouragement with every post-op discussion; however, one of the surgeons made an emphatic point to us as he visited me in the ICU last Sunday.  He said:

This procedure went exceptionally well.  With all the complexity there are usually aspects of the surgery that aren’t totally smooth.  Not this one.  It all went perfectly.  It was like I was being guided through the operation by a Higher Power.  It was a very memorable experience.

Ten days later I was getting the staples removed and one of the nurses in the OR that night confirmed she had the same feeling when she said

That was a cool night…everything just seemed to come together so perfectly.

A huge break for me was that when the surgeons got in to cut away the disintegrated part of the mandible, it had not progressed as much as they feared toward the front of my mouth.  So instead of cutting from the mid-line of my lower jaw and removing exactly half of the teeth on my lower jaw, they removed from the canine tooth backward (only 4 teeth).  I have been quite preoccupied with the aesthetic impact this surgery would create (missing obvious teeth in the front of my smile, lopsided jaw shape, future dental / denture issues).  But for right now it looks like the impact overall on those things will be minimal (I’ll eventually get 4 dental implants on my right side to replace teeth removed but none are visible).

the breathing tube

Like after last January’s surgery, I was left sedated and intubated through the night even though the surgery ended by 10 pm.  My first 10 hours of consciousness last January were unbearable because of the breathing tube.  This time I barely remember the experience.  The first 7-8 hours of that day are so hazy that I only slightly recall when we took the tube out.  Were it not for the video Camilla took you would have a hard time convincing me it ever happened.  This was probably the biggest miracle of the hospital stay for me.

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intensive care unit

Pain management has been the big challenge this go around, and it started right when I came out of sedation.  Because I’ve been taking pain killers regularly for six months for the jaw necrosis, a normal cocktail of ICU narcotics didn’t really do much for me.

And I suffered.

I couldn’t communicate and I was irritable and antsy and, honestly, I was in borderline agony most of that first afternoon.  By that evening I was basically defeated.  I couldn’t imagine going through the night without getting some relief.  I told Camilla “I quit” and she consoled me and assured me and calmed me down.  At one point I took a whiteboard marker I’d been using to scribble primitive communications with my un-bandaged left hand and I threw it as hard as I could against the wall when a nurse finished telling me there wasn’t really anything else they could give me to alleviate the pain.  I broke down into tears after the episode and tried to mumble an apology to the nurse for loosing it.

I was broken.

Camilla kept working with me and coaxing me onward and comforting me and distracting me.  By 10 pm we asked a close friend of ours to come to the ICU to pray with us and give me another blessing.  It was the same friend who popped into the ICU last year during my lowest moment on Day 1.  Prior to this surgery I had requested from him and my other friends that no one visit me in the hospital.  I wanted time to be alone and just with Camilla this time.  But this good friend hustled to the hospital at a moment’s notice and breathed peace and comfort into the room via a priesthood blessing I felt more than heard.

Not sure how but the sun rose the next morning.

the remaining hospital stay

By Sunday afternoon (three days after surgery) they transferred me from the ICU to a normal hospital room.  By this time the unbearable pain had reduced to mostly a constant discomfort and occasional breakout pain.  Most of the discomfort was from laying / sitting in a hospital bed on my 145 pound boney butt!  I mostly survived in 3-4 hour increments.  I would get pain meds and spend the first hour mostly comfortable in a recliner chair.  As I got restless in the chair I would transition to the bed and sleep for 1.5 to 2 hours.  Then I would wake up and spend the next 45 minutes to 1 hour gritting out the increasing pain until 4 hours were up and I could re-medicate.

On Monday my surgeons came to check on me and I told them how miserable I was and that I really felt my recovery would go smoother if they released me to go home.  Since we were already experienced with the feeding tube, pill crushing, and bandage rotation plan from the previous year, the doctors acquiesced and gave me release orders for the next day, Tuesday.  I was elated, but also a little nervous about keeping up with everything.  In Camilla we trust!

I’ll wrap up this first part of the post and describe the next week of recovery from home in the next one.  Suffice it to say, the 5 days in the hospital was tough.  Was it tougher than expected or tougher than last year’s surgery?  I don’t know.  It doesn’t matter.  It was in the same zip code.  A zip code we’d been in before.  Camilla and I know our way around.  We know the path, and thankfully we know The Guide.

“I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.”                    – Jesus

 

the next post will have 5-10 days of recovery and some thoughts on principles from this talk called “Waiting upon the Lord” by Elder Robert Hales

To Be Known

“And the Lord said unto Moses, I will do this thing also that thou hast spoken: for thou hast found grace in my sight, and I know thee by name.”  Exodus 33:17

“And I have a work for thee, Moses, my son; and thou art in the similitude of mine Only Begotten; and mine Only Begotten is and shall be the Savior, for he is full of grace and truth; but there is no God beside me, and all things are present with me, for I know them all.”  Moses 1:6

Huntsman 140 Team Jarem 2017 (2 of 91)

As per usual, I’ll give a health update and then a few other thoughts, this time on the concept of God knowing each of us and working together all things for our benefit.

Health Update

It has been over 30 days since my last heavy dose of chemo and I can tell.  I feel like a human being and not like a zombie (although I still look like one).  The weekly Erbitux infusions have gone well.  I experience some fatigue for 24-48 after the infusion, but beyond that and a moderate skin rash, I have no side effects.  I felt well enough last week to play a few rounds of golf with some buddies in Arizona.  My drive still slices and my fairway irons still hook.  Must be the cancer because I remember everything I used to strike being dead straight.  Weird.

I’m in a good place right now.  We are happy.  I’ve enjoyed the heck out of life the past month.  We just got back from a week in Arizona.  Something about that place just lights me up.  It is the family and the friends and the sunshine and the memories of simpler times.  And Camilla has really embraced Arizona as well so it is special to be able to share it with her.

I’ve been battling osteoradionecrosis for about 7 months and treatment requires a partial jaw reconstruction surgery.  March 8th is the scheduled surgery date.  And yes, I strategically scheduled it so that during my 4 week recovery I’ll be able to binge watch NCAA March Madness.  I’m no dummy.

The radiation therapy I did in 2017 killed the right side of my mandible (jaw bone).  The soft tissue and skin slowly dies and peels back which exposes the bone underneath my teeth on the inside part of the jaw bone.  It has been the source of chronic pain for months and continues to get worse.  So with the good news from our last scan, we feel like this is the right course of action and should be a long-term fix.

The surgical procedure is called a mandibulectomy (don’t google it) and will be performed by the two surgeons that did my hemiglossectomy in January of 2017.  I’m not sure if it is a good thing or a bad thing, but the surgery is similar to the hemiglossectomy.  They will be cutting out the bad part of the bone and tissue, pulling tissue / bone / blood vessels from my arm and leg, and then reconstructing the right side of my jaw with my own tissue and a metal plate.  Like last time, I’m planning on about ten days in the hospital post-surgery and a total of about four weeks recovery.  My doctors have told me that they can usually put things back together in a way that has minimal aesthetic impact (doctor speak for ‘you won’t look like too much of a freak but you will look different’).  They’ve also said that in the long run they don’t anticipate my speech to be much different than it is today (I’ve got a slight lisp and speak a little bit out of the left side of my mouth).

I’m not afraid to say that I’m afraid of this surgery.  While I enjoyed a speedy and complete recovery from the last major surgery, aspects of it were almost unbearable.  Plus, I went into that surgery last January a much younger, stronger man than the old bag of bones that I am today.  I was a full forty pounds heavier and my body hadn’t spent the previous year being blasted with about every imaginable poison and fire-torture known to oncologists.  I just can’t imagine that the incredibly quick recovery I had from the hemiglossectomy is going to be my experience this go round.

But despite the anxiety of thinking about what is staring me down on March 8th, I’m mostly peaceful about things and know it is the right next steps.  So what else is there to do except square up my shoulders and walk into this thing head first.  In fact, I’m grateful that I have the opportunity to have the surgery because if I wasn’t doing this it would only be because I didn’t think I had enough time left for it to be worth it.  Camilla and I are thinking longer term now.  That is invigorating and motivating.

So I’ll try to update the blog a little more often during my recovery from surgery and I’ll put lots of gross pictures up for those of you that like the gore.  Plus, sharing some of the war photos makes me feel tough.  [I am so tough that I will have a note card with “more morphine” printed on it that I flash every time I see a nurse while in the hospital].

To Be Known

If you are like me, you regularly long for the assurance (and reassurance) that God knows you.  But, it is more than just that He knows me or is generally aware of my existence.

As my Creator, Father in Heaven, and God that I worship, does He know things about me that I don’t yet know about myself?  Can that level of personal closeness coupled with complete omniscience coexist?  And if it does, does that Intelligence have power over the events of this life, working them together for my benefit?

How can I come to know the answers to these questions?

Elder Robert Hales said it perfectly.

“Turn to the scriptures. Kneel in prayer. Ask in faith. Listen to the Holy Ghost. Learn that your name and needs are known by our Heavenly Father. Live the gospel with patience and persistence. And in the name of Jesus Christ, I promise, ‘If ye will … ask [Heavenly Father] in faith, believing that ye shall receive, with diligence in keeping [the Lord’s] commandments, surely these things shall be made known unto you.'”

There really isn’t a lot more to say on the subject of how to know the answers.  Have a desire.  Go to the Source of the answers.  Believe that the answers will come and that they will be true.  Listen.  Act.

I’ve related quite a few experiences on this blog of times when I felt that the God of the Universe, the Savior of the World, and the Holy Ghost were hanging around an operating table or hospital bed or chemo stall or bedroom recliner, letting me know they were there for me, to comfort me.  Those experiences are a huge part of my relationship with and faith in God.

But some of the greatest faith building experiences I’ve ever had are the times when I feel that perfect nexus of God’s omniscience, our close personal relationship, and His orchestration of events in my life.  The dots all connect for a moment and this deep sense of awe covers every inch of me and a big smile breaks over my face as I whisper to myself “Wow, He really is in every detail.”

And I guess the reason why I cherish those types of experiences so much is because they seem to solve so many issues and answer so many questions all at once.

  • When I know that God knows all things including who the “eternal me” really is (present, past, and future) I can more easily communicate with Him through prayer and seek guidance through the Holy Ghost.

 

  • When I know that God has a deep vested interest in the “best me” that can be developed I can more easily trust Him with my deepest concerns and desires, and I can more completely follow His commandments with confidence that they are worth living.

 

  • When I know that God truly has the power to direct things and that life is not just a random sequence of events I can more easily hope in and patiently wait for God’s promised blessings in my individual circumstance.

 

Can’t you just see God sitting on the side of the room with a huge smile on His face as you unwrap the gift He’s been crafting and preparing for you?  He delights in those moments.

As a family, and personally, we had one of these ‘unwrappings’ yesterday.  I won’t go into the details on the circumstances, but it was a clear and unmistakable reminder that God cares about everything we care about.  No detail is lost on him.  He spares no effort and withholds nothing in His carrying out of His divine plan for us.  For me.  For you.

If it has been awhile since you’ve had that assurance (reassurance), maybe now is the time to seek it out.  I know it had been too long for me, and so I’m grateful for yesterday.

And to my brother Reed, thanks for letting us be a witness to one of what will be many ‘unwrappings’ in your life.  To see what God has in store for your life is exciting enough to want to stick around for.  Placentero nos es trabajar, en la vina del gran Rey Jesus.  Pa’lante, papa, pa’ Puerto Rico.

 

 

Scan results are in…

…and they are GOOD!

My CT scan this week was a momentous one. I had a scan three months ago that showed some promising signs that my current treatment regiment was shrinking the tumors in my lungs. It was the first scan in over a year when there was less cancer in my body than the previous scan. I’ve continued the same regiment since the last scan — nine additional weeks of regular poisoning — and while I was optimistic this scan was going to also show good results my batting average hasn’t been good on these.

Well, I caught a break. A substantial break by my perspective.

The scan showed that there are no new tumors in my body, that several tumors in my lungs and one in my tongue had fully resolved, and that the two remaining tumors in my lungs were mildly smaller than they were 9 weeks ago.

The poison was efficacious. Finally!! Hallelujah!

The prayers and faith have worked this entire time. Their efficacy have never been in question. That isn’t tied to getting a positive outcome or seeing a tumor dissipate or “mildly shrink”. The collective outpouring of faith from all of you healed me, and continues to heal me daily, from lots of things. Primarily it healed my vision of God’s plan for me and my willingness to accept whatever that is. Camilla’s faith and that if my kids has been the most precious and visible to me. And I know so many others have exercised similar faith.

But now we’ve got the drugs that are working. The modern miracle of medicine combined with the eternal miracle of God’s grace are working.

And that really pumps me up.

To say we are excited about the news would be accurate. But to say we are grateful is the ultimate understatement.

I’m by no means out of the woods. I have metastatic head and neck cancer. Don’t look up my odds of beating this thing entirely because it’s worse than my high school batting average and that wasn’t good either. But to receive this type of scan result is a gift of time. The future is still uncertain and who knows how this will play out and how long this type of response will last. At some point my body will probably spring another leak and we will have to deal with that when and if that day arrives.

But that day isn’t today, and it’s not going to be tomorrow.

We’ve been given an additional allotment of time and that is a precious gift. I refuse to get complacent with today and finding joy and happiness in the present. But now I feel like I can make plans for the summer. We can think about where we want to spend Thanksgiving and probably Christmas and not feel like that is a wasteful endeavor. We are booking the Newport Beach house in October. I need to think about what to get Camilla for her birthday in June and our 12th anniversary in December. How incredible is that?!?!

I don’t know how to articulate to you how exhilarating that feels.

So my next steps will be to continue on a weekly infusion of an immunotherapy drug called Erbitux. I’ve been doing erbitux alongside the chemo drugs for the past 18 weeks. Side effects are relatively mild and I can remain on this drug indefinitely. We will scan every 12 weeks and stay on this plan until something changes in the scan. Erbitux has shown to keep cancer in check over extended periods of time and so the goal here is to keep the tumors small and to prevent new ones from sprouting. My body has taken about all the chemo it can for the time being so this will hopefully provide me a prolonged window to heal and maybe put on a few pounds. What I weigh right now is about what I weighed in 8th grade! 😳

I won’t dampen the spirits in the post by posting about an upcoming surgery I have scheduled, but that will be a separate post in a few weeks to describe what I’ll be doing in March.

Tonight we Fly the W.

Tonight we kneel in deep gratitude.

Tonight celebrate.

Reflections on 2017

During most Decembers I look back on the previous 12 months and think “Man this year flew by!”  It goes unsaid that 2017 was different.  Like, A LOT different.

Before sharing some reflections on the past year, here’s a quick rundown of what the next few months hold for us.

  • I’ve finished 3 of 9 chemotherapy treatments on this current round.  My next dose is a “mega dose” and will be on December 29th (happy 11th anniversary Camilla!).  My last dose for this block of treatment is February 2nd.
  • The week of February 5th I’ll have another scan to see if the tumors continue to shrink in my lungs and to ensure no new spots have popped up in my mouth, neck, or anywhere else.
  • Assuming we get good results, we’ll probably stop chemotherapy for a month or so in order for me to get jaw surgery which I’ll share more about in a future post.

It isn’t very hard to put into words what 2017 was like.  It sucked.  Despite all the amazing lessons we’ve learned and the growth we’ve experienced by having this adversity pass through us, if I could choose to have avoided the whole ordeal I would.  No question.  No hesitation.  I know that isn’t what I’m supposed to say.  But it is the truth.

And that is what is scary about this life, especially when you have an eternal perspective on how these experiences should fit into the bigger plan of God in preparing you for life after death.  The things that prepare us the best for becoming who God wants us to become are the very things that we would avoid if we could.  I’m grateful that I wasn’t given a choice when it came to cancer.  I would have chosen incorrectly.  I’d be farther, not closer, to the ultimate goal.  God knows what’s up.  That is also the truth.

This post is just to share some of the many highlights and fond memories of 2017.  But first I wanted to share what I think the biggest learning of the year has been for me and for Camilla.

***** Trust and Rely on God *****

That is the lesson.

I’ve asked God all sorts of questions this year.  I have felt God continually by my side, probably more so than any other previous year.  And while I have heard God many times, especially through the words of Prophets in the scriptures and General Conference addresses, I still grapple with the answers to many of my questions.  And I’m okay with that.  Wrestling with the answers to hard questions is a worthy endeavor.

The question my mind most commonly comes back to is:

Am I going to make it?  Will I survive?

I think it is a question that we all ask on a regular basis about all sorts of different issues.

Whether asking if we will survive an illness, a financial challenge, a family issue, raising small kids, a crisis of faith, a stage of life, or anything else, we are usually getting at the same core issue.  While we want to know how to get through something, ultimately our deepest desire is just to know that we will get through it.  It will be resolved.  It will be okay.  Soon enough it will be in the rear view mirror and we can get back to normal.  When I know that the end is going to work out how I want it to my anxiety goes down and I can put my trust in that outcome.  If I know I’m going to get my way in the end it makes going through whatever it takes to get resolution a heck of a lot easier.  But knowing the end from beginning can make you complacent in the present, and it certainly requires less reliance and trust in God.

When you don’t know that it will work out, doubt and fear and anxiety feel like they are always nearby and ready to pounce.  Things get hard and your mind can go crazy on you.  This might be it.  You are screwed.  You’ll never feel well again.  This isn’t a stage, this is all you’ll ever know.  There isn’t really a grand plan to life.  This life is all just a series of random, uncontrolled, and purposeless events and you have horrible luck.  Nothing you are doing will really make a difference.

The mind is volatile when you are outcome dependent and you don’t trust that God is in control of both the journey and the destination.  The only way I’ve been able to find peace while having no assurance that I will be healed is by learning to trust in and rely on God.  Trust Him today.  And when you wake up tomorrow, make the decision to trust him again.

As I’ve asked God the question — will you heal me? —  I’ve been surprised by the answer I feel but it really goes back this concept of trust.  What God has said to me and Camilla in response to my question is:

I’m not going to tell you whether you will be healed or not.  Surviving isn’t the point.  The point is for you to trust me, regardless of the outcome. 

And then He flips the question on me:

Will you trust me?

That has been a harder answer to accept than I thought it would be (maybe that is why I keep asking the question in case one day God slips up and spills the beans on how this movie ends 🙂 ).

But I think it is the best answer for me / us, at least for now.  It requires us to trust God on a daily basis and look for the little piece of manna that He provides to get me through the day.  It reminds me that it is more important to not shrink than it is to survive.

Maybe at some point in this journey God’s answer to me will evolve into something else, but for now that is what he is saying.  And I’m good with that.  That is the truth.

(Note:  if by chance He has told you the answer to our question, please shoot me a note.  Please and thank you.)

 

So on to the highlights of 2017….

The Huntsman 140

I wrote about the experience here.  A few talented individuals at TruHearing pulled together this video below totally pumps me up every time I watch it.

It is worth watching — Huntsman 140 Team Jarem

The Family Time

We spent more time together as a family this year than any previous year.  People have been so generous with their time and resources to enable us to do some fun things we wouldn’t have otherwise done.  We also made a concerted effort to be together more often in just the normal routine of our day.  Camilla has really the driving force in making sure we do dinner together on most nights, that we do a family night on Mondays, and that we stick together rather than divide and conquer.  She has read the Book of Mormon to our kids almost every night as they go to sleep, and I know if you asked the kids what matters most to “Mom” they would say “being together”.  I think it has made a big difference.

Newport Beach and the annual Balboa Island bench picture with the Millers

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Encinitas,  CA with our favorites SPALY

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Lasted 4 innings at a game with my whole crew.

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Razoring in the mountains with the Millers

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My people always came to sing and pray with me each night when I couldn’t get out of bed or my chair to be a part of the bed time routineIMG_7171

Normal shenanigans when the spiritual thought for family night gets too stale and the kids are restless.  

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Camilla’s favorite holiday is 4th of July.  Pool weather, BBQ-ing, and family all day long.  This is us at the Provo Parade and is a great tradition we have with the Clarks every year.

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Fall family drives on the Alpine Loop and walks around Cascade Springs are great consolation prize for losing the summer pool weather that our family loves.IMG_8504

Chicago Trip(s)

I was fortunate enough to go to my favorite city in the US three times within 6 weeks.  Once for work, once for a trip with Camilla and friends, and once with just my Dad and Brother.

Eating our way through Chicago and swagged up at Wrigley

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My dad and brother making their first trip to Wrigley with me

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Architecture river boat tour of the cityIMG_7679

 

Fantasty Fishing Trip

My eighth year in the Dad’s Life Fantasy Football league has been epic.  I’m in the championship game this weekend for the second year in a row this weekend and hoping to finally be a champion!  The other 11 guys flew out to Utah so that we could do the draft in person and spend time together.  Was a killer weekend of fishing, golfing, and getting to know the human side of Brian Willey.

Fly fishing on the Provo

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Golfing Gladstone in Payson, Utah (missing Darowski and Flake)IMG_4007

Reel for Recovery Cancer Retreat

There is a phenomenal not for profit organization called Reel for Recovery that takes men with late stage cancer on guided fly fishing trips at no cost to the patient.  I went with a group of 12 guys (all of whom were 30 years older than me :)) and was partnered with a guide who taught me all the tricks of the trade.  We fished, we talked, we recharged, and I left the three day event optimistic in continuing the fight.

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Light Up Puerto Rico

If you follow me on Instagram or Facebook you probably got pretty burned out on all my Puerto Rico posts from September 20th through now.  It was been a bittersweet experience to be involved in some humanitarian relief efforts for mi gente boricua.  Something went off inside of me when Hurricane Maria hit and I was incredibly energized (almost to a frenzied state) by trying to help organize relief efforts with Camilla and many close friends from my time as a missionary.  It was and continues to be a life-altering experience.  And while we’ve been able to achieve some miraculous results, I’ve always felt like I wanted and could do more but was held back physically.  That was incredibly frustrating.  One of my darkest and lowest weeks of the whole year was actually in early November when I reached a breaking point physically and knew I could no longer run as hard on Puerto Rico and work and family and had to pull back in all three facets.  It is hard to explain how I truly felt inside so I’ll just leave it at that.  But serving the Puerto Rican people who have had such a lasting impact on my life since living from 2004 to 2006 was certainly a 2017 highlight.

A group of mostly returned missionaries from Puerto Rico formed “Light Up Puerto Rico” and partnered with Tifie Humanitarian.  To date we’ve raised almost $500k and placed 100+ solar generators, 75 temporary shelters, hundreds of water filters, and thousands of solar lights.  Over 100 people have spent time in Puerto Rico distributing supplies, repairing roofs, cleaning up damage, praying with and blessing the people, and sometimes just sitting on their porches and crying with them.  Camilla went down for 3 days in October.  I’ve had to watch it all through social media posts as I’m unable to travel there for now.

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Satellite pictures before the hurricane hit and about two weeks after the hurricane hit.  100 days after the storm, 40% of the island is still without power.  

PR before and after

 

There are so many other wonderful memories and experiences from 2017.  It certainly wasn’t a lost year despite all the physical limitations and all the time that went into treatment and recovery.  I wish I could post a full list of every act of service that was performed for a family.  There isn’t enough room on the internet to fit it all.  I feel that almost every day of this year there has been some touching and thoughtful gift of service someone has provided us.  I would estimate that out of the 365 days this year we have probably had 175 meals brought in and another 50-70 plates of treats — that is not an exaggeration.  We’ve had an endless stream of treats, cards, visits, texts, emails, and gifts delivered to our home.  I think we had written about 45 thank you cards by the end of January and couldn’t keep up and had to stop that practice.  All I can say is THANK YOU, to all of you, for being in my corner.  For cheering me on.  For taking care of my family.  Thank you.  Thank you.  Thank you.

Thank you for a wonderful 2017.  Let’s get after in 2018.