Details from Surgery and Recovery Plus Some Gross Pictures

13 days since surgery.  It still feels appropriate to calculate time that way.  It won’t for much longer, and that is a good thing.

I’m sharing some gross / vulnerable / graphic pictures and feelings in this post.  Anyone that stumbles onto this blog going through the same operation will want to know these specifics, so here it is (and if you send me a note and I’ll send you more details and videos…the more you know going into it the better you can prepare your mind in my opinion).  Also, I want to be real with my experience which hasn’t been all butterflies and rainbows and positive cupcakes.  Being positive isn’t achieved by “smothering unpleasant truths beneath a cloak of pretended happiness.” Genuine positivity, the type that is contagious and inspiring, is achieved by navigating reality while not losing hope for the ideal you are striving for.

That said, I’m feeling more positive and optimistic today than I have at any point in the last 13 days, the reasons why are all below.  I’m grateful for the recovery trajectory I’m on.

Before I jump into the specifics of surgery and recovery, you’ve got to know what happened on January 4th (the day before surgery).  That morning I posted about my diagnosis and published this blog.  Positivity.  Text messages.  Emojis.  Voicemails.  Social media comments.  Crush Cancer.  Prayers and good thoughts.  All of it was flowing that afternoon.  Then I had to go get some blood drawn — 1 vial and it should have taken about 15 seconds.  Except, I passed out, scared my wife to death, and had 3 people nursing me back to health with apple juice and saltines.  I’m all pumped up to face surgery tomorrow where half my tongue is getting chopped off, but a little blood draw knocks me down flat.  I thought it was a great reminder from God in my final pre-surgery preparations that it was His strength, not mine, that would be on display.  Thanks for the reminder.

  • Surgery
    • Started 4:55 pm on January 5th (I was watching the operating room clock as the anesthesia kicked in); they removed 40% of the right side of my tongue and floor of my mouth and rebuilt it with tissue from my left arm which they subsequently patched up with a skin graft from my left thigh
    • Ended 10:00 pm (roughly when lead surgeon came out of those doors you see in the movies to talk to my wife and my mom who were in the waiting room)
    • The doctors left me sedated through the night so my first glance at the clock was the next morning (January 6th) at 8:45 am
  • Worst day of my life, formerly known as January 6th
    • My first sensation when I woke up was that I wasn’t getting enough oxygen.  I was breathing.  But where was the oxygen?  My next realization was that Camilla was there and telling me that surgery was successful and that I was recovering well.  I couldn’t speak and my hands and legs were strapped down to my bed.  They gave me paper on which I could blindly scribble notes.  How did surgery go?  Camilla:  I already told you, it went great.  Clean margins.  I need more oxygen.  Camilla:  the machines say you are doing great, you have a breathing tube that is helping you and they will take it out soon.  So how did the surgery go?   My short-term memory is the first thing to go when I’m on heavy drugs….
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      • breathing tube in my mouth, feeding tube in my nose, hooked up to lots of wires and monitors, neck incision stapled shut under right jaw, two tubes coming out of right neck to drain fluid, swollen tongue that barely fit into my mouth.  Not pictured:  splinted left arm where they removed arteries and soft tissue used in the reconstruction of the tongue.
    • The breathing tube was helping me breathe despite a very swollen airway, but it was also like trying to get all the oxygen you need through a straw.  Every 5 seconds I’d get a breath that felt like 60% of what my body needed.  This lasted for 7 agonizing hours. While it was physically painful, the battle that I remember most vividly from that day was with my mind.  My mind was telling me I was worse off than I really was.  Camilla and all the doctors and monitors were telling me that I was breathing and that I was fine and that I would be fine even without the tube.  My mind was decided on the fact that I was suffocating.  An inspired friend of mine showed up at the ICU that afternoon despite my wishes to not have visitors (and I’m not even sure how he found me or got into the ICU in the first place).  He prayed with Camilla and me, lightened the mood with his sense of humor, and left me with an experience that I will never forget.  The breathing tube came out at 3:51 pm and for me, recovery started.
    • It was a long day for both Camilla and me, and others that were getting regular updates.  Nothing could have prepared us for how absolutely overwhelming everything was, yet we were pulled through it (or as my friend inspiring-ly told me before surgery we were “stretched by a merciful Lord“).  Remember two days ago when I passed out?  We made it through Friday.
  • 3 days in respiratory ICU
    • To ensure that the transplanted tissue and arteries from my arm successfully survived in my reconstructed tongue and mouth, nurses in the ICU would check the pulses and blood flow in my mouth every 30 minutes.  My body was improving rapidly and the swelling in my neck and head were decreasing even faster.  My circuit training in the ICU was to sit in my bed until my feet got restless (2-3 hours) then move to a chair until my neck hurt (1 hour) then walk a few laps in the ICU with a nurse until I was worn out (15-20 minutes).  Basically CrossFit, right?
  • 4 days in the normal hospital
    • On January 8th I was transferred from the ICU to a normal hospital room.  Pulse checks on my new tongue were bumped down to every 2 hours, I transitioned from hydromorphine to percocet (read: I was getting my mind back!), and my body continued to heal rapidly.  By the evening I was talking well enough for people to understand what I was saying.  Pain in my neck and tongue were very manageable the whole time.  Most of the pain I felt was in my left arm (the “donor site”).
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      • Major reduction in swelling, only one drainage tube in the right neck, feeding tube supplying me with premium jet fuel
    • Similar ICU CrossFit routine — bed, chair, walking.  Each day my mind was more clear, my swelling decreased, my ability to talk increased, and my mustache grew.  I was ready to go home.
    • A total of 7 days in the hospital left me anxious to come home.  A ton of people made those 7 days manageable.  Thank you to all of you.  I’ll just leave it at that and I hope to thank each of you individually that made such an impact on me.
  • Home recovery, January 12th to present
    • Coming home was like getting that first flow of full oxygen after the breathing tube was removed on January 6th.
    • The one tough part of home recovery was I still had a feeding tube and now had to schlep around a backpack full of formula at all times.  I was always worried one of the kids would trip on it and dislodge it from my nose or that I’d get tangled in the tube while I slept.  My left arm still hurt but I really didn’t have pain beyond that.
    • Camilla became my nurse.  She had to grind up pills every eight hours and mix them into water that she would inject into a side tube in my feeding apparatus.  I’ve been mostly useless at home with only one arm.  Camilla is accustomed to that, even when I had two working arms.
    • Here’s a picture from January 15th.  I’ve only lost a couple of pounds since surgery thanks to the 2k calories a day I get through the feeding tube.  At this point I haven’t had a drink of water or any food in my mouth in 11 days (but I didn’t feel hungry).
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  • Post-hospitalization follow-up with surgeons, January 17th
    • I saw both surgeons on January 17th who are thrilled with how I’m healing.  Tongue looks good.  Neck looks good.  Arm looks good.  Mustache, not so much.
    • I was able to swallow liquids during the day and so I had the feeding tube removed.  Just having that tube off of my face makes me feel 100% more human.  Since the tube came out I’ve had a shake, a breakfast burrito, chicken soup, and another shake.  And another shake after that.  The part of the tube I’m holding below is where it entered my nose and the other 2-3 feet was what ran through my body.  Also, Go Cubs.
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    • I also had all the staples removed from my neck (19) and arm (25).  I finally got the first look at my arm without the splint on.  Now I know why it hurts like a banshee.  The amount of tissue and attached artery needed to reconstruct my mouth and how seamlessly things have gone are truly miraculous.
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  • Today
    • So while I still have a long ways to go on my arm recovery, I am feeling like a million bucks right now.  Here I am only 13 days after major surgery, mostly looking like a real human being.  No staples, no feeding tube, and no mustache.
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So before I start thinking about the next steps (improving speech clarity, chewing, rehabbing the left arm, chemo / radiation, then chemo again), I’m just going to enjoy right now.  I’m asking God for my daily bread and finding mana each day on my doorstep.  I’m happy.  I’m positive.  I’m grateful.  How could I not be?

Cancer is Like a Baseball Season, Flying the W

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My incredibly thoughtful family made me a quilt leading up to surgery and gave it to me the night before I went in.  I love it.

The quilt is made up of Chicago Cubs t-shirts and paraphernalia that various family members sent to my mom and sisters to be included.  Many of the shirts are ones that we’ve worn to games to cheer on our Cubbies over the years.  Being a Cubs fan has been a family love affair for 30-40 years that I think started with my uncle Lane…we grew up at around HoHoKam and Fitch Park in Mesa where the Cubs do their spring training and then got sucked in during the regular season through WGN.  I remember being 10 years old and going to games in March with my dad and cousins and uncle.  I remember working with my dad in his landscape business during the summers and doing lunch almost everyday at Barros Pizza on Gilbert & Brown so that we could catch a few innings of an 11:10 am first pitch.  I love baseball and I’ve always loved the Cubs because it has brought a deeper level of meaning and family to being a fan.

The Cubs have a tradition dating back to the 1930’s or 40’s.  When they win, a “W” flag is flown from the scoreboard at Wrigley.  It lets everyone in the neighborhood know the outcome of the game (an “L” flag is flown when they lose).  “Fly the W” has been a phrase that has taken hold with social media and is now synonymous with a Cubs victory.  You’ll see that in the middle of the quilt my family stitched “Fly the W”.

I don’t know if cancer is like a sprint or a marathon or a decathlon or some other metaphor.  It’s a lot of things.  Maybe it is like a baseball season.  It is long.  It is a daily grind.  It is slow moving and filled with endless pitches, innings, and games.  But at the end of the season you can typically point to just a handful of moments that were the “turning point” or the “critical times” that ultimately determined the outcome of the season.

My experience so far with cancer is that it feels like baseball.  I have about 162 milestones plus the postseason that I need to navigate to be donned with my world champion cancer free ring.  If I think about it like that, I get overwhelmed.  So I’m waking up today and looking at scouting report on who is pitching and what I need to do to be successful for just today.  I’m going to worry about today’s game and then when we win today, I’m going to celebrate and Fly the W.  I’m not worried about tomorrow’s game or the postseason.  Today is about finding a way to Fly the W, regardless of the challenge set before me.

Leaving hospital

It has been a memorable seven days at the hospital and now it’s time to go home and start a new chapter.  Looks like I will be home sometime this afternoon or evening.  

7-10 day hospital stay was the expectation from the start and I am grateful that my body is healing so well.  Your faith and prayers have been integral.  I also think my body is loving the nutrients it’s getting.  I’m on some sort of high grade jet fuel through my feeding tube.  For most of my life my body has survived on soda and sunflower seeds and nachos.  Sorta feels like another life lesson in there for me to figure out…

When I go home I will still have a feeding tube in place.  I can’t swallow any liquids until Monday and if I can prove to my doctor on Tuesday that I can keep down liquids, the tube comes out.

It will be a continued healing process at home that will take time and patience, but I am so happy.  I miss my kids. I miss the feeling inside my home.  I am ready to be home.  

72 hours post surgery

Still in a narcotic haze and so I don’t feel like I can adequately write about the last three days yet. 

Three things I know:

1.  There is some grand life analogy that I will figure out someday about my relationship with breathing tubes.  As for this moment, I hate them and they terrify me.

2.  Having Camilla with me 24-7 at the hospital has made all the difference.  Thanks for the countless hands that have enabled this blessing.  And thanks to Camilla for facing every part of this with me.  Friday night and Saturday morning she shared with me some of her experiences during those first 24 hours.  

3.  The outpouring of faith on my family’s behalf has been surreal.  So many people from many different faiths sent notes to let me know they were exercising their faith.  Little kids decided to fast for me in addition to their prayers.  While these first three days have been harder than expected, we have felt immense hope and patience and strength.

PATIENCE + HOPE > CANCER

Here’s a short video.  The speech slur is temporary.  ​​​

Speech slur is temporary and I am actually ahead of schedule.   

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Positive For Cancer

Positive. For. Cancer.  That is a weird way to be informed of your diagnosis.  When you find out you have cancer it is usually the result of a biopsy and the doctor says something like “I’m really sorry to inform you that your biopsy results came back positive for cancer.

No one actually knows what the doctor says after those three words.  Once you hear the word “cancer” your mind typically darts off to some dark place and stays there until you can start scouring the internet for more information (which can take you to even darker places!).

I don’t know why diagnostic jargon is what it is, but I actually like the term Positive For Cancer.  My feelings toward cancer are pretty simple — it is a Monster.  And while the details of the Monster(s) I am battling are in another blog entry, I wanted to highlight the most important part of my treatment plan.  I will undergo a major mouth surgery, radiation of the mouth and throat, and chemotherapy — the cancer treatment triumvirate.  But the most prolific part of my treatment is positivity.  

The outcome we are hoping for is to be cancer free and to remain that way the rest of my life.  But my quest is to do as Neal Maxwell (former leader in my church) described by partaking of a bitter cup without becoming bitter.

I am grateful for the powerful support of so many great people in my life at this time.  I hope to have a positive impact on others that are battling their own Monsters and like me are looking for the strength to endure well.  I don’t yet know how or what that impact will be, but I know the opportunity will present itself and that I will be ready.  In the meantime, I hope that sharing my experiences on this blog will be at least a small help for some.

Diagnosis and Treatment Plan

Getting the News

When I was initially diagnosed with tongue cancer in 2015 I was sitting in an ENT’s office with my wife when the doctor said “Your biopsy results came back Positive For Cancer called squamous cell carcinoma.”  He then proceeded to relate several important points about how early stage and treatable my cancer was, but I didn’t hear any of it because my mind had already left the room and gone to some dark corner of hell.

I was so dramatic about it all, mostly within my own mind and a few private conversations with my wife.  My journal entry after getting the initial news is pretty hilarious now looking back on it…”I’m going to die.  My wife is going to be a widow.  My five kids will be fatherless.  I’m dead.”  My first go around with cancer ended up being a relatively short and simple sparring match the Monster.  But I was a rookie and handled it like one.

For those of you going through something like this for the first time, those types of feelings can be expected.  Don’t feel guilty for how you feel or where your mind goes.  Don’t feel guilty.  But don’t let those emotions take root.  They aren’t from you and they aren’t going to be you.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind  2 Timothy 1:7

The second time I was diagnosed with cancer was very different.  I was sitting alone in my office in the early evening when my doctor called.  He gave me the initial news over the phone…. “The gland we took out last week was not a cyst like we thought.  The squamous has come back and this time is showing perineural invasion.  We need to treat it aggressively with surgery and remove a lot of your tongue.  Come in tomorrow with your wife so we can talk through things.”  I remember slamming my fist on my desk which probably clued in my friend that I work with who shares an adjacent office.  He came in right after I got off the phone and so did my other good friend who is our CEO.  The three of us talked and while I was stunned and a little emotional in the moment, I actually felt pretty clear headed.  I wasn’t a rookie anymore.  I knew what the process would entail.  I could do this, whatever “this” was.

Although this diagnosis has been much more serious and complicated than the first, I have felt a lot of peace, optimism, clarity of mind, and hope through the whole experience so far.  The diagnosis process is agonizingly long and filled with days of waiting anxiously for results from scans or biopsies or other tests.  I’ve had my nights where my mind has left me again for that same dark corner of hell it found back in 2015, but the normal state of mind has been calmness.  More on that at the end of this entry.

Diagnosis

  • I had early stage tongue cancer (oral squamous cell carcinoma) in October of 2015 that was treated with surgery and statistically it had a less than 10% chance of recurring.  Recovery from that surgery was a brief two weeks and I felt completely normal during the following year while being observed every two months by my doctors.  In November of 2016 they found a new tumor on the floor of my mouth in the sublingual gland.  The new tumor was small (1.3 CM) but the cancer was now spreading through a major nerve in my mouth.  Recurrent cancers are typically a more aggressive disease and thus require a more aggressive treatment plan.
  • I had several CT and PET scans in my head & neck and also of my entire body to ensure that the tongue cancer had not spread through my lymph nodes or metastasized to other organs in my body.  While everything in my throat and head looked clean, scans showed that I had something else going on in my left hip area.  I had a biopsy done on my ilium bone (this hurt!) and the results were Positive For Cancer — but this time it was Hodgkin’s Lymphoma.  It’s very unusual for Hodgkin’s Lymphoma to appear as a primary tumor in the bone and even though it’s considered Stage 4 lymphoma, it is a cancer that is very curable with chemotherapy.

Treatment Plan

  • Surgery (tongue cancer)
    • On January 5th I will have surgery and will likely be in the hospital recovering for 7 to 10 days.  The surgeons will remove 35-40% of my tongue on the right side, all of the soft tissue in the floor of my mouth on that side, and the sublingual nerve.  They reconstruct the removed parts of my mouth with soft tissue that they take from my left arm (called a “free flap”).  With the reconstruction I should be able to speak and swallow normally with very little long term impact.  It’s a pretty miraculous surgery that you can read more about here and here.
  • Radiation (tongue cancer)
    • After about 4 weeks of surgery recovery, I’ll start intensity-modulated radiation therapy (IMRT) which will last for 6 weeks.  I will have a 15-20 minute treatment session Monday through Friday for a total of 30 treatments.  The radiation will be focused on the diseased parts of my mouth and expanded to areas where the cancer may have spread microscopically or come back in the future.  Radiation is going to be tough but we’ll talk more about that when I’m actually going through it.
  • Chemotherapy (Hodgkin’s Lymphoma)
    • The opinion of all the specialists I’m working with is that the tongue cancer needs to be addressed immediately and that the lymphoma treatment can wait for a few months.  Lymphoma is treated with chemotherapy and as I mentioned before this type of Monster cowers pretty quickly to those drugs.  My doctor’s did not think it was wise to have me undergoing chemotherapy for the lymphoma while doing radiation on mouth because the combined side effects would be too hard on my body.  So the plan is to sequence the treatment by going after the squamous cell first and then attacking the lymphoma.
    • Chemotherapy for Hodgkin’s Lymphoma is mild compared to treatment for other types of cancers.  My plan will entail about 12-14 treatments spread out over 6 months.  I’ll receive chemo every other week and should be able to work and live a pretty normal life during this time.  The major side effects are fatigue and a weakened immune system, but the horror stories of constant nausea, vomiting, and diarrhea are not expected side effects.  So I’ve got that going for me.  Assuming all goes as planned, I will start the chemotherapy treatments toward the end of March.

 

The Key

I realize that keeping a positive attitude about my circumstances right now is comparatively easy to when I’m actually in the thick of my treatment.  But if I want to finish well I have to start well, and that is what we are doing.  We.  It’s the only pronoun that makes it through a trial like this, I’m convinced.

My wife is fighting this as if it were her own cancer.  She’s incredibly strong and resilient, and when she’s struggled she has found answers to prayer that have bolstered my faith.  It has been okay for me to have bad days because her strength alone has carried us to the next dawn and the hope of a better day.  She is and will always be there.  We are fighting this.

There are other pools of positivity that I am frequently drawing from beyond what Camilla and I can muster ourselves.  Faith in Jesus Christ, His grace, and His gospel is an infinite and eternal reservoir.  My relationship with my kids who, although they are young, are showing understanding and empathy.  My wonderful family, both mine and Camilla’s.  Our loyal friends from so many different chapters of our life.  My generous and empathetic employer and colleagues from work (who all fit into the friends category).

It’s a positive shot in the arm when I hear my kids pray to Heavenly Father that my pain will be removed and my cancer ultimately healed.  It’s a humbling moment when I hear that the kids of my friends, who don’t really know me, are praying for me by name at night before they go to bed.   Their faith will carry me forward in positivity when I can’t on my own.

Relationships with the people I love has always been my source of happiness in life and now is my lifeline of support and positivity.  Thank you for being a part of that lifeline.  We are going to get through this and be better for it in the end.