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.

IMG_2429IMG_4342 2IMG_5554IMG_6148IMG_7225 2

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
IMG_1164
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.
IMG_1163
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.
IMG_1162
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.
IMG_1160
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.