Scan Results, Breast Cancer and Few Words

Based on the blog post title your first thought was probably, “Oh no!  He has breast cancer now too?!?  How improbable and unlucky can one guy be?”

What’s funny is if my oncologist called me with scan results and told me that I had breast cancer, after all I’ve seen at this point I would probably just take it in stride and say “Okay, so do I need a mastectomy?”

More on breast cancer later, but first some scan results…

The quick summary is:

  • There are more tumors in the lungs and the two tumors that remained from last time are bigger, meaning that the treatment I’ve been on since mid January and was planning to do for the summer doesn’t work for me.  The most concerning tumor is a new one that is 3.3 CM (little bigger than a half dollar) and is pushing against an important airway and major arteries to the lungs.  It has also caused partial paralysis to my left vocal chord.
  • No new signs of cancer anywhere else — hip, neck, oral cavity all look good and all other organs also look clean.
  • At the end of the post I provide a much more detailed breakdown of the size and location of the tumors with some imaging.

So these are not good results, and certainly not what we had hoped for.  And while it is fair to classify them as pretty bad results, they aren’t checking me into a hospital and preparing me to die.  I have been feeling some changes going in my body now for a month (the scan results actually came in two weeks ago, I just haven’t known how to share them broadly).  But things have always been a roller coaster of ups and downs and so when I feel things going down I just raise both hands so I can feel the air rush through my fingers and wait for the the coaster to bottom out and then start to climb again.

At this stage of the fight the goal is to prolong things…to keep the cancer from spreading for as long as possible…when the cancer springs a leak during one treatment type you try something else and hope that locks things in place for as long as possible.  And so we’ve spent the last two weeks exploring what to do next that will hopefully buy us a handful of months or even a year.

The next steps in treatment:

  • 15 sessions of radiation treatment on a very targeted area of the upper left lung to shrink the new tumor that is pressing against arteries and an airway
    • I did my first two treatments on Thursday and Friday.  I’ve been twice this week and will go tomorrow and Friday.  Then 4 more days next week and 5 days the week after that, ending on June 15th
    • Side effects are most fatigue, little burning sensation in my chest, and potential harsh cough.  I already have a pretty tough cough and hoarse voice.  Just hoping it doesn’t impact my swallowing too much!
  • After radiation ends I am hopefully entering the TAPUR clinical trial for a drug called Pablociclib.  Pablociclib is already an FDA approved chemotherapy drug that is administered with pills rather than through an IV.  It is a drug that was approved to treat certain types of late stage breast cancer that have a specific genetic mutation.  That genetic mutation is the same one found in my tumors when we did some genomics testing last year.  So the idea is maybe something about how Pablociclib interacts with this specific gene can stop my cancer from spreading.  Sounds really interesting to me but the new oncologist I’ll be working with on this treatment trial wanted to level set with me when she said “I’m pretty sure this won’t work but you should still try it.  You really have nothing to lose and until we show it doesn’t work there is always a slim chance you might see response.”
    • The goal here is to do 2 months of Pablociclib treatment and then have a scan showing that the cancer has grown by no more than 20%.  That is what is defined as success.

 

So where is my head at on all this?

I don’t know yet.  I will let you know when I have some thoughts that I can pull together into sentences but I’m not there yet.

But here is some goodness from this past week that I will share.

Camilla gave a talk in our church service yesterday.  It was very inspiring on many different levels, and there were two points she made that I will be thinking about for some time to come.  First she quoted a leader from our church named Bishop Christopher Waddell who said the following in his talk Turn to the Lord

Whatever change in life’s circumstance come our way and whatever unexpected path we may have to travel, how we respond is a choice.  Turning to the Savior and grasping his outstretched arm is always our best option.

And then she shared some scriptures from Alma 34 on the infinite and eternal nature of Christ’s atonement.  At times when she feels depleted and wonders if maybe the source of strength has dried up, peace and love and comfort flow in abundance.  God’s love never runs out.  It has no limit.  It doesn’t get tired or frustrated.  It doesn’t give up.  It is infinite and eternal.

Those two ideas plus her suggestions on more meaningful and humble prayer have really made a difference for me this week.

I guess to sum up how I feel will be to quote Paul Kalanithi again from When Breath Becomes Air.

I can’t go on.

I will go on.

I can’t go on.  I will go.

 


 

 

[additional info on the imaging and tumor sizes below]

Specifics on the tumors and imaging:

  • In the February scan we saw the 4-5 tumors in the lungs shrink significantly, three of which totally went away, and the last two that were left were less than 1 CM in size.  That is no longer the case.  Both tumors showed up significantly larger in May’s scan, but still small on a relative basis.  One tumor is 2.8 CM and the other is 3.3 CM.  For comparison, a half dollar coin is about 3 CM.
  • There are 4 new smaller tumors that showed up, the largest of which is 2.3 CM (about the size of a quarter).
  • There is a new tumor that showed up that is 3.3 CM and is nestled right up against one of the main pulmonary arteries.  This one is the most problematic.  Not because of its size — my doctors told me I would need to have 100+ tumors that were 2-3 CM or several tumors that 20 CM+ before my lungs totally shut off.  The problem is its location
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Everything you see here is normal except where the mouse clicker is pointing. All of that grey you see is tumor and is pressed up against major arteries from the heart to lung.
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The other problem the with the tumor is it is shrinking an important airway. That black space where the mouse clicker is pointing is an important airway to the left lung and should be the same thickness throughout whereas you can see mine is starting to get pinched off.
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The grey outgrowth you see on the right hand of the central structure is another view of the same tumor. Looking top to bottom, you should just slide right down that side but instead the half dollar size mass is sitting there at the end.
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This is a look at one of the other tumors. You’ll see a black hole with light grey wall around it in the top right. This is the tumor that was less than 1 CM in February and is now over 3 CM in May.

Was (is) it worth it?

Yesterday was the two month post-op check with my head and neck oncology surgeon Dr. Robert Hunter.  He asked me a question that has had me thinking a lot over the last 24 hours.

After talking about how tough the recovery has been but how well things have healed, he asked me if I felt better now than I did prior to the surgery.  That answer was easy — yes, no question.  The constant pain in my jaw from the exposed bone that was slowly disintegrated is gone.  I have very little pain in my jaw and it is infrequent.  I am eating better.  I am speaking more clearly.  I am just feel better all around (I’m also not on chemo, so there’s that).

Then he very genuinely asked a question in a way that I could tell he wasn’t sure how I would respond.

Was it worth it?

Before I share some thoughts that this question triggered, let me give a quick health update.

I shared some pictures and videos after surgery that showed me pretty banged up.  Not walking, tons of swelling, dozens of staples holding different incisions together, drains coming out of my neck, etc.  Oh and of course the sick mustache that always sprouts when I can’t shave for a week.

So last you saw of me on the blog I looked something like this:

fat face
Not by best look.

All of that is now in the rear view (but objects are closer than they may appear, the body just has a great way of helping you cope by distancing your mind from previous pain).

If you saw me walking down the street with a bunch of other people you wouldn’t even notice me.  I look totally normal again.  I don’t look sick.  All of the swelling is gone.  My neck scars are less noticeable and my forearm and leg scars are usually covered up with clothing, so I really look like a real human being again.

I posted a video from the hospital about 5 days after surgery where I was fighting with all the strength I had to take five steps.  Last weekend I walked around in the mountains for an hour and even did something that sort of resembled jogging for a few hundred yards.  No more limp, just my normal strut.  Here is a video of me walking down the hallway of a hotel:

https://giphy.com/embed/Xx2RlPm3275mg

Here’s a selfie from the chemo stall this morning as I get my weekly immunotherapy infusion:

may 10 2018

Pinch me.  Seriously.  There is only about 6 weeks between these two pictures.  And while there is a deep valley of darkness and suffering that I had to pass through during those 6 weeks, I can’t help but feel grateful and in awe of where I’m sitting right now.  I’m eating, talking, walking, smiling, and best of all I’m living.

So by now you know my answer to Dr. Hunter’s question.  Absolutely yes, it was worth it.

Now I have be real with myself.  I still have cancer.  Stage IV metastatic squamous to be precise.  I’m not cured.  I don’t look or feel sick, but I’m strutting around town with a ticking time bomb inside of me.  It might never detonate.  It might blow me to pieces this year.  Or next.  Or in five years or ten.  Or never.  “They” say it will detonate eventually and that I can’t escape it, I can only delay it.

But I am no different than anyone else that doesn’t have cancer.  We all think that we are going to live long lives, that we are entitled to some amount of future time, that life has some element of certainty.  It doesn’t and that is okay.

Paul Kalanithi said it best when he said

The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”

I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

I’ll write more about Paul at some point and is amazing book “When Breath Becomes Air.”

So back to the question of “(Is) it worth it?”

“Was IT (the pain the surgery caused) worth IT (the sustainable improvement in how you feel)?”

You can fill in the parenthesis with your own mandibulectomy surgeries of your life, but I think it is a phenomenal question that I intend to think about a lot more going forward.

Most things that fill our lives are relatively meaningless — they aren’t worth IT.  It doesn’t matter how easy or hard IT is, if I’m pursuing something that is meaningless IT will never be worth it.  Not a single time.

There are just a few things that we have in our lives that really matter — and yes, absolutely they are worth IT.  It doesn’t matter how easy or hard IT is, if I’m pursuing something that is full of meaning and rich with purpose IT will always be worth it.  Every single time.

Thanks for the question, Doc.

 

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.