[_______] by His Grace

There are a lot of appropriate words you could use when filling in the blank for

[__________] by His Grace.

Saved.

Amazed.

Changed.

Empowered.

Overwhelmed.

Maybe a word that wouldn’t come to mind initially but I think is a good one is mentored.  I’ll come back to some thoughts on that after a quick health update on the past few weeks.

I continue to grapple with what to share in blog posts now — but for now I still feel like it should be a balance of regular health updates with some of the “lessons learned” from our experiences.  I hope that I never come across preachy or even worse, non-authentic.  I’m not trying to sugar coat anything here.  Things are tough and I wish for a full restoration of health and my normal life on a daily basis.  But I find that trying to glean some truth from this whole ordeal allows me to cope and carry on, and that is what I want to do.  Carry on.

Health Update

Three treatments of Taxol chemotherapy are now in the rear-view mirror and I won’t have another treatment until December 4th.  We are taking the two weeks off of chemo to let my body recover and to fully focus on eating my dad’s amazing Thanksgiving spread of brisket, pork ribs, and smoked turkey.  I’m all about the alternative medicine treatments and a 12 hour meat palooza feels long overdue at this point.

The Taxol really hasn’t been too bad.  Blood work all looks normal, no mouth sores, no real nausea to speak of, and no neuropathy (yet).  I even feel like there has been a slight decrease in the chest pain I’ve been experiencing.  The fatigue has been heavy and the body aches last for 48-72 hours but both have been manageable.

The big challenge of the past 3 weeks has been shortness of breath.  I never quite feel like I’m getting enough oxygen and when I try to breathe deeply it’s like there is giant rubber band around my diaphragm that is cheating me out of half of each breath.  We have been testing my oxygen levels regularly and they are a little low so this week I started using some oxygen machines that have really helped.  I have a machine that plugs into my wall at home and I can use at night and anytime I’m at home.  And I have some portable oxygen tanks that I can take with me during the day and use as needed.

No lie, it is a bit sobering to go out in public dragging an oxygen tank and having my otherwise impeccable face framed up by cannulas in my nostrils and tubing around my ears.  But if this were a 12 round beauty contest I would have lost by Knock Out in Round 1.

I’ve been using oxygen at night since Tuesday and during the day off-and-on since Friday and it has made a noticeable difference so I’m sticking with it.  I no longer feel like I’m on top of Everest after climbing the stairs to my bedroom.

Grace

There are many variations to how the Christian world defines grace but one that I particularly like is that grace is the divine means of strength and help provided through the bounteous mercy and love of Christ.  Christ’s grace is infinite and eternal and fills all of time and eternity.  I know that I am saved by His grace which makes me amazed and overwhelmed by it.  I’m also changed and empowered by His grace to become a new creature over time that will ultimately “be like Him” as it says in 1 John 3:2

What I’ve been feeling more and more lately is that while grace is a gift that Christ gives us, it also comes with an invitation to engage in a mentorship, or maybe better said, an apprenticeship.  His desire is to have a hands-on experience with every aspect of our soul so that He can stretch and mold and shape us in every needful way.  He gives us His grace, the power to make it through the apprenticeship, but He wants to personally teach us the lessons over a lifetime of experiences rather than like some one-time injection or magic pill.

His tutelage comes in many forms, including miracles and blessings from heaven that overflow our cup.  But it seems like some of His most effective teaching moments come through our weaknesses and sufferings.  Forget staying in the comfortable core of our faith where we might mistake what is really His grace for some of our own “developed strength”.  Christ takes us out to the edge of our soul, often to a spot we didn’t know existed and where we can recognize in full humility that His grace is all that we have.  And it is there where He does His best work because we are in our most teachable state (Ether 12:27), wholly relying on His merits to save (2 Nephi 31:19).  It is there where “I may know him, and the power of his resurrection, and the fellowship of his sufferings” (1 Phillipians 3:10).

As the omniscient master craftsman, the Savior knows when his apprentices need His close presence wrapped around them in order to survive just like he knows when they need distance and silence to sort things out for themselves.  He knows when to reward and when to discipline, when to use a warm blanket and when to use a fiery furnace.  And His motive is always love.  Love that has been perfected through His own earthly experience.  Love that has been earned.

So as we all suffer through unforeseen and unwanted challenges, it feels natural to ask ‘Where is God?  Am I now forsaken or forgotten by His Grace?  When will this end?  How is this going to be resolved?’  What Camilla and I have been learning is that Christ and His infinite love are always there and He never leaves our side, especially in the most bitter of times.  Contrary to how it might feel in the moment, His grace is most prevalent and most effective in our weakness and suffering.  And so we carry on…

“forgetting those things which are behind, and reaching forth unto those things which are before, press[ing] toward the mark for the prize of the high calling of God in Christ Jesus”

1 Philippians 3:13-14

Peace

Latest Scan Results

After a few months of meeting with different doctors and doing some different tests, we decided to go back to the trusty old CT scan for imaging on Friday October 26th. My lead oncologist felt that a ten week gap without treatment was long enough and wanted to see how the cancer had reacted.

The previous issues with the scans were that I had large areas of white murkiness that were inconclusive to the reviewing radiologists.  The murkiness could have been infection or inflammation or more cancer or something else altogether.

The results we received on Sunday October 28th were very consistent with my previous CT scan batting average — bad. The cavitary lesion in the lungs had grown a little (those black holes I’ve posted pictures of before).  The murky spot in the upper left lung that we had been watching since June finally revealed its true colors and showed up as a cavitary lesion (another black hole).  It measures 8.5 cm x 6.5 cm which is about the same size as the other big lesion in the right side of my lungs that is 8.9 cm x 6.1 cm.

The news didn’t get better the more we read on in the report.  The report read “The right main pulmonary artery is narrowed to 4.5 mm, previously measured at least 12.7 mm in diameter.”  And the final part was the real stinger.  There are spots in the liver and in both kidneys that they suspect are new metastasis.  They are small and not impacting the functions of those organs, but obviously not good to have sprung a leak into new organs.

Treatment

So after speaking with our doctors Sunday night we started arranging for a new chemo regiment to start that following Tuesday.  I will be doing weekly doses of Taxol which is a fairly well tolerated drug that people with lots of different types of cancer take.  The purpose of Taxol is to see if we can buy ourselves a little more time — it won’t likely shrink the cancer but hopefully can slow / stop the cancer growth for a period of time.

I did my first round on Tuesday October 30th and my second round this past Tuesday November 6th.  They load me up on Benadryl prior to giving me the Taxol which totally wipes me out for the day.  During both treatments I have fallen asleep during the infusion, Camilla drove me home, and I woke up a few hours later almost not able to remember how I made it to my bed.  Ironic how my system is so sensitive to a slurp of Benadryl but we pound it with poison to kill some broken cells and we can’t get a response.

I’ll do another treatment next week and take two weeks off from treatment to see how I’m feeling and then likely start back up for three more rounds in December.

There is no way or reason to sugar coat it.  It is hard to see the continued progression of the cancer.  I feel it in my body now more than I ever have.  It impacts my breathing and my stamina and it makes my chest ache.  It is ever present.  The chemo makes me really fatigued and feel the body aches as if I have the flu.  It’s not a fun combo.

Peace

But there is still peace.  There is a foundation of peace in our lives that helps us deal and cope keep plodding forward.  The Savior said

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

John 14:27

And we are able to access that peace and can attest to how real it is.

Sunset to be remembered

At the beginning of October we went to Rocky Point, Mexico to meet up with various members of my family and extended family and one of my good friends from high school.  We had a fantastic week on the beach.  There was some extra sentimental value because this was the vacation spot of my childhood.  Every year I remember going to Rocky Point with my family and meeting up with other family friends that also went down there.  Getting to see my kids playing on that same beach with each other and with their cousins and being back there myself for the first time in 15 years brought a flood of memories.

On our drive home we were blessed with the most spectacular sky and sunset.  Here is a little photo of what I could capture, but you really had to be there to appreciate the magnificence of it all.  It was like a perfect sendoff from one of my favorite places by the Maker of Sunsets.

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Hope

The importance and purpose of hope has been on my mind almost constantly the past few days and so I’d like to share a few thoughts.  But first a quick health update.

Still exploring treatment options

We are still trying to figure out the right treatment path forward.  I met with another team of specialists to review my case.  Comfortingly, they confirmed that everything I’ve done up to this point is what they would have recommended.  Unsurprisingly, they also confirmed that they don’t have any additional standard treatment protocols with proven results and that my incurable status leaves me with choices on trying to balance longevity with quality of life.

The lung biopsy we did two weeks ago was just one of the newest nodules that had popped up in the last 6 weeks and looked different than the other lesions.  It came back as inflammation and organizing pneumonia and did not contain cancer cells (which is a good thing!).  As I understand it, I have 5 cavitary lesions that they feel confident are squamous cell, this spot that they just pulled tissue from that is inflammation, and one pretty large spot the size of a tennis ball that they aren’t sure if it is cancer or inflammation / organizing pneumonia.

I’m meeting with a pulmonology specialist on Oct 4th and 5th and I’ll likely have some more CT guided biopsy fun sometime before then.  Now the thinking is that they want to do more biopsies and get cells from the largest mass in the upper left part of my lungs and from at least one of the other cavitary masses which are the ones that look like black holes on the CT scans.

The clinical trial I was exploring through the Huntsman Cancer Institute won’t be a fit for me until after they get more information and potentially treat the organizing pneumonia.  So my best guess right now is that we treat the inflammation / organizing pneumonia for 4-6 weeks and then start up on either a clinical trial or a maintenance chemo drug.  But a trip to Rocky Point, Mexico with my extended family will precede whatever the next treatment plan is.  Some times tacos are the best cure to problems and so I’m going to test the limits of that theory the second week of October.

Hope

We all have hopes and dreams for good things that we will experience in the future.  I’m not unique in looking forward to watching my kids grow up, traveling the world with my wife, becoming a grandparent, and providing meaningful service.  While none of this is guaranteed in life and while we should never get complacent with the goodness of today, it certainly generates excitement and appreciation to look forward to those experiences.

My focus the past three or four months has been to create memories with the family that will long outlive me.  It has been about having experiences and conversations that the kids can reflect back on later in life and from which they can draw hope and strength and understanding.  It has been the most important summer of my life and by far the most enjoyable.

But in some ways it has really amplified the aching I feel for those elusive future experiences with my family.  Friday morning I enjoyed a bike ride with Sofie to a breakfast joint on the Newport Beach pier.  We had some great conversations and the whole time I’m sitting there hoping the tears don’t fall from my eyes and below my sunglasses where she can see them.  I see this confident, loving, beautiful 10 year old girl that is going to experience so much greatness in her life and I get to call her my daughter and I’m not going to be around to witness any of her teenage or adult life.  I knew to ride my bike out in front of her on the way home so that I could get the emotion out and wind-dried before making it back to the beach house.

Thinking that I’d had my emotional moment for the day I plopped in my normal spot at the beach for some time in the sun next to Camilla as we watched the kids play in the surf.  And then all my mind wanted to do is think about sitting in that same spot with all my adult kids as we watch the grandkids playing together and as my adult kids take shots at me for my laminated family trip itineraries and overpacked schedules.  Can’t I be the over exuberant grandpa and trip planner for at least a day?  I have the best grandpa name that all the little grandkids will call me — BIG PAPA!  Just give me one day of that.

So as I’m sitting there next to Camilla wiping my faucet for a nose and mixing my physical pain with an increased emotional aching, I am agonizing over the knowledge that all the memory creating we can jam into a single summer doesn’t compensate for 40-50 years of future plans that will never happen.

Camilla reminded me of what Elder Gong taught us a few months ago when we met with him:

Christ makes it possible for a perfect restoration of all things and there is nothing good in this life that we will miss out on that won’t be restored to us through the resurrection and eternal life He will give us.

I am continually feeling the anchor of my soul being the ultimate hope in Jesus Christ and His atonement.  Nothing else can sustain us through this harrowing experience.  Hope through the atonement is the only infinite and eternal reservoir of strength that can match what we are going through.

Ether 12:4

“Wherefore, whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works, being led to glorify God.”

To the best of our ability Camilla and I have lived life in an appreciation for the present moment while pairing that with a great hope for future decades of idyllic experiences as a family.  But that hope isn’t the ultimate hope.  And as I was feeling my hope for the golden years diminishing, I am realizing that ultimate hope in Christ gratefully and miraculously includes those hopes that I thought I was being deprived of.  Just as the atonement swallows up sin and pain and sorrow, I believe it also compensates for missed opportunity and disappointment for things not experienced, even if at the present moment that disappointment feels close to infinite.

What awaits us all in the mansions of our Father is “a better world” than however great our future prospects look from our current perch.  And that is a comforting thing, whether our future prospects look dim or shiny, to have the confident expectation of and longing for the promised blessing of all that the Father has.

My hero Elder Neal Maxwell wrote:

“Thus, real hope is much more than wishful musing. It stiffens, not slackens, the spiritual spine. It is composed, not giddy, eager without being naive, and pleasantly steady without being smug. Hope is realistic anticipation taking the form of determination—a determination not merely to survive but to “endure … well” to the end (D&C 121:8).

While weak hope leaves us at the mercy of our moods and events, “brightness of hope” produces illuminated individuals. Their luminosity is seen, and things are also seen by it! Such hope permits us to “press forward” even when dark clouds oppress (see 2 Ne. 31:16, 20; Heb. 6:19; Ether 12:4; Col. 1:23). Sometimes in the deepest darkness there is no external light—only an inner light to guide and to reassure.”

And so we will cling to real hope, the Ultimate Hope, and let Him fill us with peace and chase away the aching.

Here are a few pictures from of our latest adventures

Amy Clark did our family pictures again this year.  She is one of our closest friends in addition to being an amazing photographer.  She captured some shots this year that I’ve stared out for over 5 minutes straight just to take in the emotion.  It was an extra special family picture day this year.  I will share the full family pictures when we send out our Christmas Card later this year.

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I had some of the greatest friends in high school and so much of who I was as a teenager was related to my involvement with our high school baseball team.  7 of us and 2 of our coaches got together in Mesa a couple of weeks ago.  We reminisced for 2 or 3 hours on all the hilarious experiences we had and how freaking awesome and athletic we all used to be :). Times have changed…

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If you spent more than 3 minutes with me in the past 5 years you’ve heard me talk about TruHearing.  It is one of the most formative and influential experiences in my life.  I genuinely love what I do and who I work with and the company that we have built together.  I was with several of coworkers at a conference with a bunch of our clients this week and it was a wonderful chance to reflect back on the amazing five year run we’ve had together. 

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Last week was our annual Newport Beach trip with the Millers who are more like family than they are friends.  It was the sixth year we’ve done this trip and each year it somehow gets better.

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Peek-a-boo

Today is Roman’s birthday.  The child that refers to himself in the third person as Shark Guy, Dino Man, Nice T-Rex, Mean T-Rex, or Baby Dinosaur is 3 years old.  What a total joy he is, and at the same time he is a complete terror.  All of you with 2-3 year old kids know what I’m talking about.

I was initially diagnosed when Roman was two weeks old so his birth in many ways is a bit of a demarcation in our lives.  I can’t imagine life without our little Shark Guy.  I imagine life without cancer all the time.

Here is a pretty irreverent picture of Roman that just cracks me up.  It perfectly sums him up.  The first thing you have to know about Roman is he’s a one layer guy, at his best.  He will either wear underwear or he will free-ball wearing shorts, but he doesn’t do underwear AND shorts very often which can lead to wardrobe malfunctions like the one below.  Life can be tough.

(Camilla “suggested” I take the photo down…it was epic, you’ll just have to trust me)

Roman either has a huge smile on his face that melts your heart or he is shrieking with anger that strikes fear into your heart that you’ll never get him to calm down.  Some of my favorite Roman moments are when we are trying to take a picture and someone counts “1, 2, 3 cheese” and right before they get to “three” Roman yells out something like “boobs!” or “butt crack!“.  Camilla and I try to reprimand him but how can he really take our scolding seriously when we are laughing out loud while doing it.

Oh Roman.

Not much new to report on the health front.  I’ve spent the past month doing some different tests and had a lung biopsy performed.  We are looking at different options and trying to look into that imaginary crystal ball for answers.  We’ve “emptied the cupboard” on standard treatment of care so really anything we try from here on out will be experimental or will be drugs that should slow the growth of the cancer but can’t cure it.  I have a few more doctors to talk things over with, maybe another biopsy or some additional tests, and then we’ll make a decision on the path forward.  Feels like the most likely thing is to go on a light chemo drug that shouldn’t mess me up too badly or potentially look at one more clinical trial experiment and then go on the light chemo.  It will probably be at least a few more weeks until we decide on a path forward.

Camilla and I had a great discussion last night about some things we’ve both been feeling recently.  She is just so good.

She said something to me that I hope I never forget.  We were talking about the choice we have during hard times to shrink and let the bitterness of the cup make us bitter in our outlook on life, or to instead look for what we might become through the experiences that stretch our souls (we’ll get to more on this in a future blog post but here is the source material).  She said:

“We have to remember that we always get to choose.  We can’t be fooled into believing that the choice to turn to God isn’t there when it get really hard.  It is always a choice and the more I’ve gone through and the more I’ve turned to God, the more I’ve felt the impression that for me I just need to love more.  That is the key for me right now, to find ways to love more and worry less about what I’m going through.”

Breathing Deeply

“Well that didn’t do shit.  Let’s do something else.”

I seriously have the best team of doctors.  There are five doctors that I work with on a regular basis:  2 medical oncologists, a radiation oncologist, a surgical oncologist, and another general surgeon.  I am confident in their expertise and training, and they all make me feel like they are on ‘Team Jarem’ doing everything they can to help me fight this cancer.  Two of them in particular do a good job reading me emotionally and communicating to me in a way that hits home.

When I walked into the doctor’s office this week I was a little pensive because I had already met with another doctor who had given me the news that the cancer had progressed while I was on the clinical trial.  So I got a kick out of that opening quote which is how my doctor informally gave me his own interpretation of the results and just as quickly tried to focus me on the next steps rather than living in the past of failed treatments.  I walked out of the building with a little more swagger and fight in me than I walked in, and now I just need to start thinking about my Spotify playlist for when I come back in a month to restart chemo infusions.

Specifics on the results

There are two new spots showing up on the scans that the radiologists classify as an “area of alveolar infiltrate, possible metastatic disease”.  That is fancy speak for “there is a bunch of hud showing up in this guy’s lungs and if he’s lucky its pus / blood / fluid but it could be more tumors”.

The other 4-5 tumors that I have in my lungs are “cavitary”.  Think of it like a small balloon that is expanding and the inside of the balloon just looks like a black hole on the imaging.  That is classic squamous cell behavior when it metastasizes to the lungs.  But I have these big and growing areas where the scans are a dense white color.  The radiologists reading the scans have said for two months now that the white spots are signs of serious infection but my oncologists feel like it is more likely to be tumors because I have no other signs of infection (fevers, coughing up blood, change in certain chemistry measurements in blood draws, etc.).

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Scan from Aug 15th on the left and Jun 15th on the right.  The black hole in the bottom left of both images is a “cavitary lesion / tumor” and you can see a lot more white around the one on the left suggesting that it is expanding.  On the bottom right of the images you will notice a new white spot showing up on the Aug 15th image.

So what we’ve decided to do is get a “CT-guided biopsy” of some of my lung tissue.  While I’m in a CT scanner they can guide a needle through my back and between my ribs to the different spots in question in my lungs and retrieve cells.  The CT imaging helps ensure they get the needles to the exact right spot and get the cells we need.  I had this done one other time when they wanted some samples of my hip bone to find out what type of cancer I had there (it was Hodgkins Lymphoma which has since cleared up).

The biopsy will also give us some new cancer cells to repeat the next gen sequence testing that we did through the IHC Genomics Lab about 18 months ago.  They will look for any new genetic mutations that we can target with newly approved drugs.  This process is what yielded the hope for the Pablociclib clinical trial and is one of the areas of cancer research in vogue right now.

Most likely outcome is that I start a new chemo regiment in about a month called Taxol and I do weekly infusions for 12 weeks or so before doing another scan.

So what does this all mean

I heard from many that my last post was pretty sobering and bit of shock to the system for them as I talked about preparing for death.  I think my friend described my current state of mind best when he said “accepting the likely fate but not giving up the fight.”  That sounds about right.  And by dealing with the prognosis in a realistic and honest fashion I think it is allowing our family to make the most out of each day and really try to learn everything we are supposed to be learning.

So I’m breathing deeply, both literally and figuratively.  I can feel that things aren’t normal in my lungs and I’m having some increased chest pain but I’m not having any problems breathing, again both literally and figuratively.  We are mostly a happy bunch over here at the Hallows home.  No moping around or letting time pass us by.  I even hopped on a bike for a short ride yesterday and played in a pick up football game that broke out at our company party last night.

Like most Christians, I believe in an omniscient and omnipotent God, meaning that He is both all-knowing and all-powerful.  I also believe that this life is a school for our learning and development, and its ultimate purpose is to prepare us meet God as a new creature made great through Christ’s grace.

I suspect that sometimes God is the instigator behind tough things that happen in our lives but that other times it is just “time and chance that happeneth to us all”.  In either case, God knows what we will go through before it happens and as such he prepares us to “come off a conqueror” through prior life experiences, people he places in our lives, and through help he will give us in the very moment we need it.  His omniscience also enables him to know what growth experiences we need and how far our souls can be stretched before they break.

His omnipotence allows him to deliver us from any situation even when it requires a miracle or inexplicable event to make that happen.  But it is his omni-loving attribute, or his all-lovingness, that holds him in check from delivering us every time things get hard.  Read up more on this from Neal A. Maxwell in his book “All These Things Shall Give Thee Experience” or read this snippet I found from someone online — it is worth 15 minutes, I promise!

Imagine if you had the power to remove all pain and suffering from your child.  I know I would use that power too often and to the detriment of my child’s development.  Shoot, if my kid whines enough when she’s bored I hand over a Netlflix-loaded screen just to end the agony for both of us!

If it is the hard stuff in life that helps us grow, it must be the hardest stuff that provides the most critical refinement.  The greatest good that ever happened was Christ atoning for our sins and behind it all was the most loving Father with most the power to deliver his son from that agony and he restrained himself because he loves us.  That is supernal, omni-loving fatherhood.  And that is the same God we worship and trust and ultimately submit our will to.

This experience continues to teach and show me things I knew only superficially.  That includes things about God and about myself and about people around me.  There is more love and goodness and hope and strength than I could have ever imagined.

And so that is why I can breathe deeply.  I can accept any outcome while still fighting for every additional day God will grant me.  I’m in good hands.  Hands that were nailed through and still bear the tokens of that sacrifice.  Omnipotent hands.  Omniscient hands.  Omni-loving hands.

And now for some fun pictures of the past several weeks:

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I work with the most incredible team at TruHearing.  Most of them live across the country and we get together in person twice a year.  At the end of July they were all in town and we went fly-fishing as a team and they all wanted to wear Team Jarem shirts since most weren’t here for the Huntsman 140 race.  This is “My Little Circus” 😉
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I was fortunate to net several fish that day (with the help of a great guide).
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A friend from work gave me a Javy Baez jersey.  He’s a professional baseball player, he plays for the Cubs, and he is Puerto Rican — I’ve got a hardcore man crush.
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Camilla hiked to the top of Timpanogos this week with some friends.
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And this is the amazing sunrise she was rewarded with after hiking through the night.

Hezekiah Time

No new news on the health front.  I’ve finished my clinical trial chemo drug Palbociclib and will have a scan soon that will tell us how we did.  I’m pretty good at growing tumors so this drug really had its work cut out for it.  I’m just keeping my fingers crossed that we didn’t end up contracting breast cancer (if that joke doesn’t make sense then you will want to read this post).

Summer Time

It’s hard to articulate how great of a summer this has been.  I’ve felt good physically compared to the previous 8 months and it really allowed me to enjoy the time.  My treatments have had very little side effects and haven’t been disruptive to my schedule.  I didn’t realize the difference it would make to not need a weekly infusion that took up half a day a week.  The challenges right now continue to be more emotional and mental.

I hope that the clinical trial has worked but I expect that it hasn’t.  The chances going into this were very slim and at best we hoped for the tumor growth to slow.  I’ve had a few people ask in a very sensitive and caring way if I still have hope to be healed or if I’m to the point where I’m just trying to enjoy what time I have left.  It is a hard question to answer because I think it is that exact issue that creates the emotional and mental battles I’m fighting.

Should I act and feel and live as if I will be healed and thus have decades more time to live?  Or should I be making end of life preparations and tying up loose ends I want taken care of for Camilla and my kids once I’m gone?

I guess what I’ve come to understand is that those don’t have to be mutually exclusive, meaning that I can still have hope and faith for a miraculous healing to my cancer while actively preparing for a more imminent departure from this life.  One of the first sermons I read after the recurrence in November of 2016 was from Elder David Bednar about the faith to be healed and the faith to not be healed and how the real goal is to not shrink.

That is still the goal here, to not shrink.  To me that means that I go through this experience and submit my will to God’s while maintaining my zeal for life.  I want to live life to the fullest even if I don’t have the assurance that it is going to work out how I want it to.  The irony is that this was exactly the situation I was in prior to being diagnosed and is the same situation we are all in, but I never really understood it like I do now.

And so lately I’ve been doing more things that those around me see as signals that I’m “preparing for death”.  In some ways that is true, but in other ways I think I’m just operating under the assumption that I’m already living on borrowed time and it would be irresponsible to not get a few things done while I can.  I’ve connected with some amazing people that are helping my organize and digitize all of my journals and files.  I’m working on a bigger project to create video for my kids that will be a mix of my life history along with things that I want them to hear from me when they are older in life.  To do all of this I’ve cut back even more on work and will continue to scale back in the coming months.  My colleagues at TruHearing have been amazingly supportive through this phase and every other phase of the past few years.  I can’t say enough about the unique blessing TruHearing has been in my life.

Hezekiah Time

I recently read a book by a man who was grieving the loss of his 57 year old wife to cancer.  They had just retired and had all of these amazing plans to live out decades of golden years together and then she found out she had brain cancer and it took her life within 4-5 months.

As I read it I really started to feel this immense gratitude for the time I’ve been given and the time I hope still awaits me.  Dying from cancer is not a bad deal compared to other ways you could go.  Dying from cancer usually gives you some amount of time to process things and prepare with those you love for your departure.  Last summer could have been it for me.  And here I sit another summer later and I can’t imagine life without the events of what has happened in the last 12 months.  These past 12 months have been so important.  Probably the most important of my life.  And I have a strong hope that next year at this time I can copy and past this same paragraph into a blog post.

This might sounds like a weird thought or question to have, but I can tell you it is one that I’ve had many times.

Is it okay to cling to this life and to fight with all my remaining strength to stay on this earth?  If it feels like its God’s will for me to have any early departure and I accept that, shouldn’t I just die already?

I recently learned about the story of Hezekiah from the Old Testament.  It has helped me recalibrate my focus on the faith to be healed because at times I have felt overweighted in the non-healing faith.

2 Kings 20:1-6

1 In those days was Hezekiah sick unto death. And the prophet Isaiah the son of Amoz came to him, and said unto him, Thus saith the Lord, Set thine house in order; for thou shalt die, and not live.

2 Then he turned his face to the wall, and prayed unto the Lord, saying,

3 I beseech thee, O Lord, remember now how I have walked before thee in truth and with a perfect heart, and have done that which is good in thy sight. And Hezekiah wept sore.

4 And it came to pass, afore Isaiah was gone out into the middle court, that the word of the Lord came to him, saying,

5 Turn again, and tell Hezekiah the captain of my people, Thus saith the Lord, the God of David thy father, I have heard thy prayer, I have seen thy tears: behold, I will heal thee: on the third day thou shalt go up unto the house of the Lord.

6 And I will add unto thy days fifteen years;

Another fifteen years would be miraculous and awesome.  I wonder how bald I would be as a 48 year old.  I’m guessing pretty bald.

Not too long ago I received a Priesthood blessing from one of the Apostles of my Church (we believe in a Priesthood organization that has a prophet and twelve apostles that hold the same office, keys, and responsibilities as the apostles of old like Peter, James, and John — here is a quick read up on that for those of you unfamiliar with the Mormon belief).  It was a very special and unique opportunity for me and my family.  As the apostle blessed me he didn’t say the words ‘be healed’ or ‘rise and walk’.  What he said was that this life was a special gift from God and that it was a worthy desire for me to want to extend my life as long as possible and he blessed me with the strength and hope to do so.  He also reminded me of the perfect and complete restoration that takes place in God’s presence after this life and that all will be made right for me and for my family.

I don’t know what is going to happen and I won’t know it until it happens.  And so because of this I feel just fine in ‘weeping sore[ly]’ like Hezekiah did at receiving a death sentence.  I also feel fine in continuing to pray for a miracle and to beg God to continue to lend me breath like it says in Mosiah 2:21.  Maybe I’ll get 15 more years or 15 months or just 15 more weeks.  But I know that however long it is I don’t plan on shrinking.

Now to make sure we end the post on a high note, here are some great pictures of the kids from some of our memories we’ve made during the past month.fullsizeoutput_773dfullsizeoutput_7732Nimo9WzKSWmqC6wXRZ0cNwfullsizeoutput_6253IMG_0025IMG_0014IMG_6141RnvY3qMVRN60ahizKMM%lgbI6NpqqnTdaHCykChyDI1g

Long overdue update and Summer living

Let me assure you that the frequency of my blog entries is in no way correlated with the amount of life being lived at the Hallows home outside of the blogosphere.  I’ve been making a list of the happenings since the last May 30th blog post and it is a fantastic list.  Life is rich and full and beautiful.  There is also the whole cancer thing going on in the background so let’s update on that here quickly.

Health update

I have been on the Palbociclib chemotherapy pill for one month.  I start my second month on the treatment tomorrow.  Once that is completed in mid August I will wait 1-3 weeks and have another CT Scan.  That will tell us what impact the drug is having on the tumors in the lungs.  Success will be measured by if the tumors have grown by 20% or less (as I detail later, the tumors grew by about 200% in one month prior to this treatment so slowing the growth rate down to 20% really would be fantastic feat).  If that is the case then I will do the Palbociclib drug for another two months and then we will scan again.  All of this is being done through the TAPUR clinical trial that is currently open and trying to target specific genetic mutations of cancers.

Physically I feel very mediocre, which for me is a great place to be.  I have not had serious side effects from the chemo.  No nausea or mouth sores or GI issues.  No fevers or sweats or any of the other demonic things that chemo can do to you.  That is a wonderful blessing and has made for a fantastic summer.  I am always tired and feel like I could fall asleep for hours at almost any moment of the day.  So in a very small way I’m getting some empathy training on motherhood.  But come on, just in the past 4 weeks I have ridden a horse, flown to LA for a Cubs game, kayaked for hours in a lake with the kids, fished, and done about all the other normal activities of an average day.  So I wouldn’t say that I’m really limited physically…unless of course it is something I really don’t want to do like take out the garbage or something and then I suddenly have this terrible aches and pains that don’t allow me to get off the couch.  I’ve been trying to tell you guys, having cancer has some serious perks.

Right before I started the clinical trial I had a scan on June 15th.  We were hoping to get a read on how successful the radiation therapy had been in shrinking the tumor pressing on an artery in my lungs and my airways.  Those parts of the scan were mostly inconclusive.  The imaging showed a lot of white “something” in the area where we radiated and some of the surrounding areas.  The doctors thought maybe I had an infection or pneumonia that was about to hit me (that didn’t happen).  They also thought it could just be inflammation from the radiation or worst case scenario it was more tumor spread.  I took it as a great big “who knows” and have mostly just listened to how my body feels.  I don’t have trouble breathing and I’m not coughing garbage up.  So I am winning on that front.

The other tumors that were in other areas of my lungs grew by about 2x during that 1 month period of time.  Not good but also not the end of the world.  The biggest one that they saw on June 15th was about 4.5 cm in diameter (up from about 2.2 cm on May 15th).   My oncologist said that when tumors in the lungs get to about 15 cm in size they start to become more noticeable to the patient.

Here’s a picture of what one of the tumors looks like in a side by side image of the June 15th image on the left and May 15th image on the right.

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On the May 15th image the tumor is 2.2 cm and you can see the black hole on the lower left side of the image where the mouse tracker is — that is about the size of a quarter.  On the June 15th image on the left side you can see the black hole is larger and more visible.

For right now, the battle is not a physical one, although I know that stage will return here at some point.  It is mostly a mental and emotional struggle for me on the same questions I’ve pondered since things got real with cancer.  How should I spend my time today?  This week?  This month?  Next month, or does that even matter?  It’s weird.  I’m sure I overcomplicate things and am overly preoccupied with the concept of being a steward over an unknown allotment of time.  Plus I just really like to have fun and I have a lot of interests and want to do and experience everything.  Combine that with my inability to say NO and you’ve got yourself Big Gulp-sized cocktail of uneasiness.

So let’s change topics and talk about the summer.

Summer bliss

This summer has been filled with wonderful memories with people I love, so it has been a successful summer.  We have enjoyed all the family that visited in June around the Huntsman 140 event and my brother’s departure for his LDS church mission.  We have also enjoyed having it just be our family for all of July where we’ve been able to enjoy each other in our normal setting — home, pool, snow shack, American Fork canyon.  The plan for the rest of July and August is to lay low in Utah and then do our favorite Newport Beach trip in September and then a Rocky Point trip in October.

I have found that I can feel just as fulfilled in my role as father playing a game of Jake the Pirate Memory or UNO as I do pulling together some big fancy trip with once in a lifetime activities.  I think it’s important to do both, but I’m trying not to overlook the opportunity to watch a movie at home with the kids and build legos as I think about overdoing it on some unnecessary extravaganza.

Just like Whitney (my 5 year old) wrote on the paper tie she gave me for Father’s Day “My favorite thing about my dad is when he plays with me.”

Life is more simple than I could have ever imagined.

Here are a few pictures from our last two months.

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