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.

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

  1. You are such an amazing example of enduring faith. We are blessed to know you. Thank you for continuing to fight. We love you and pray for you and your family.

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  2. I don’t know how you do it but I’m in tears and then all the sudden busting up laughing with your positive humor! Send hugs and prayers your way. Lei never misses your name in her prayers❤️

    Like

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