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.

21 thoughts on “Diagnosis and Treatment Plan”

  1. We love you Jarem as well as Camilla and those precious children I also claim as mine. We are rooting for you and will be praying and fasting for you on a regular basis.
    Scott and Tammy ❤

    Like

  2. Jarem! I just want you to know, we are with you, brother (from another mother, as Cody would say😉). When a battle arises, we stand and fight together. We will be following your progress, but more importantly keeping you in our prayers and fasting. I learned first hand, a few years ago, that the Lord is keenly aware of us individually. I’m sure you already know that. He is in complete control. Lots of love to you and Camilla and family.

    Like

  3. Jarem,
    You have always been a favorite of mine and I know Heavenly Father loves you even more. This sounds like a difficult path but if anyone can conquer it, it is you. Hang on to that positivity, faith and hope. We will add our prayers to your children’s!

    Like

  4. Jarem , nuestro amado Elder Hallows, nuestra familia estará en constante oración esperando tu pronta mejoría. Muchas bendiciones.

    Love you all

    Like

  5. Jarem , nuestro amado Elder Hallows, nuestra familia estará en constante oración esperando tu pronta mejoría. Muchas bendiciones.

    Love you all

    Like

  6. We love you guys are grateful for the path our lives took to meet you. We will be praying for you and your sweet family. Thanks for sharing. You both are amazing. I have always admired you and Camilla for how kind and loving you are to everyone.

    Like

  7. Jarem,

    I will be praying for you daily that you may have strength to face this trial and be healed at the end of it. Thank you for sharing with us through this blog! Un abrazo para Camilla y toda tu familia.

    Like

  8. Hi Jarem: I went to high school with your mother. Sending love and prayers your way from Dallas, Texas. Thank you for sharing your story.

    Like

  9. Dang Jarem!! Life is so tough sometimes!! I feel for you and your sweet family! You have bolstered my faith and hope tonight with your words because I know it’s true…we can get through anything; even our darkest days! These trials bring such a different level of perspective to life, the plan and or faith! You and Camilla have such a strong foundation and I know you will be able to lead your family through this! You guys are in my prayers and thoughts! Thank you for your kindness to my family during one of our dark corner days!!:)
    Stephanie Moilan

    Like

  10. Jarem, you have always been one of the most positive and faithful people I’ve ever known. I am so sorry you are going through this, I can only imagine how hard this must be for you and your family. You will all be in my prayers. Good luck in your surgeries and I pray that you have a quick strong recovery. And thank you for continuing to be a light and example to those around you even amidst your trials. Lots of love to you and your family!

    Like

  11. You are so awesome and brace Jarem! It can be so hard to positive in far less worrying circumstances…I don’t know how you do it but I’m impressed to say the least! You and your family will be in my prayers. 🙏🏼😘 You’ve got this buddy! 🙌🏼👊🏼💪🏼

    Like

  12. You are an amazing person! Thanks for taking the time to share your experience with us through this blog. We will be reading, praying, and hoping for the best.

    Like

  13. My initial thought in seeing this was “oh no, not Jarem!!” I’m so sorry to hear all of this and we will be praying for you and your whole family. Cancer sucks! I love your positive outlook though and you have always been that way! I am sure your wife is amazing and I know you can conquer this as well. We will be praying for a speeding recovery and that the doctors are guided during the surgery!

    Like

  14. Jarem, it’s been 10 years since we set foot in Curaçao together. The rest is history, but we knew at that time that with faith, nothing doubting, we could do miracles. Nothing could stop us. We could be beaten down, mocked, turned away, laughed at, scorned, chased by dogs (a specialty in Curaçao it seemed), and just plain rejected. No matter what it was that stood in our way we knew whom we served. Through it all, we knew the Lord would support us. Jarem, out of the countless people I have come to love and admire in life, there are few that are as high on that list as you. You are a warrior. That is the word that comes to mind when I think of you. You are special and sometimes the best of us get hit hard in life. Pretty. dang. Hard. Your faith has inspired me many times. I love you brother. You are in my thoughts, prayers, and fasts. Keep the faith my friend. The Lord is with you and watching you. Much love, Joe

    Like

  15. Hey jarem so sorry about what is happening to you. You are my favorite. I know that you can do this you just stay positive. One of the reasons that I admire you so much is that you are so positive and inspiring. You always smile. and uplift me when I need you the most just like in scout camp. I wanted to let you know that I am fasting for YOU. Get better

    Like

  16. Jarem,
    Mitch and I were at the Temple this morning. Your name and your sweet family’s were added to the prayer roll. We are praying hard for you! I shared everything with Maggie yesterday… she sends her heartfelt hope and prayers. I remember you and Maggie laying on a blanket as wee little ones staring at each other… both sucking on your binkies! We love your mom and dad and we love you and are praying for you all!
    Mitch and Molly Foy

    Like

  17. Se que Nuestro Padre Celestial tiene un plam maravilloso detras de esta prueba y saldras vencedor..TU TESTIMONIO SERA MAYOR TE AMAMOS..FAMILIA VENTURA DE VIEQUES

    Like

  18. I am vince massa,17 years ago I had the same Cancer as you,same beauty mask and foam plug in my mouth as you. They were going to cut my tounge out all the way . It really did not set in how bad it was till then. I had chemo
    And radiation treatments also. The dosage was enough for a 400.lb man it about killed me I was 175 lbs. Lost my saliva glands in the process. I had a feeding tube, 2000 cc of water,plus the 12hr feedings. All I can say it gets worse but you will make it
    I had a lot of blessings and prayers also. Wanted to end it by my own hand but faimly helped me through it,by revolving all fire arms in the house. I will say prayers for you like friends did for me. Vinc massa

    It worked but lost my saliva glands in the process.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s