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.