Moving forward and not looking backward

I’m continuing to feel better.  In fact, I almost feel like a real human being again!  I’m eating lots of different foods, feeling more energy, and even doing some fun stuff again like hitting golf balls and going to basketball games.  It feels great to be more active and energized again.  Someone told me the other day “You look way less horrible than you did a few weeks ago.”  Thank you very much.

We had our post radiation / chemo scan and got the results back.  Before sharing those results, I need to share a little back story.

During my first week of radiation / chemo at the beginning of February I felt two new lumps in my neck.  I went in to my doctor who biopsied the lumps and low and behold they came back positive for cancer.  It was the same cancer from my tongue — squamous cell carcinoma.  To understand the extent of the spread I had a CT scan and we found a total of 5 tumors in my neck.  Somehow my tongue cancer had sprung a leak and spread to the neck even though we got clean margins from the surgery and found no signs of cancer in the lymph nodes that were removed.  When one of my doctors first told me his perspective of how my cancer was behaving, he called it an “[expletive] monster”.  Not sure if that is the formal medical term for it or not but sounded spot on to me.

So for several months we’ve known about these tumors and have been praying that 6 weeks of radiation and chemo would eradicate the cancer and get us back ahead of the squamous cell.  As the treatments wore on (and wore me down) we could still feel the lumps in my neck so we were prepared for bad news on my latest scan results.  All of this culminated in the news we received about a week ago following my May scan.

The tumors in my neck were smaller than they were in the February scan, but they were all still there.  They also found a new lump in the left side of my tongue about the size of skittle.  Not good news.  But it was mostly expected and didn’t really change much for us.  We had already been planning on a second line of treatment — immunotherapy drug called Keytruda — and the scan results confirmed that we needed to get started on that treatment immediately.

My reaction to the news certainly reminded me that I am human — it put a lot of questions in my mind.  Why did I have half my tongue cut off?  Why did I get a max dose of radiation that blistered my mouth and throat so badly I couldn’t swallow my own spit for almost two months?  Why did I get chemo that had me throwing up everyday (vomit + blistered throat = unhappy customer) and buried me in fatigue?  Was the last 5 months of suffering completely pointless?  Why isn’t “treatment” working for me?  [Expletive] monster was certainly the term bouncing around my head.

I’ll end the post with some closure on the questions above, but first lets talk about what this all means.

  1. The squamous cell is the more serious and important cancer to fight right now.  We’ve got to get a handle on it and so the hodgkins lymphoma in my hip will continue to take a back seat for now.
  2. When surgery / radiation / chemo don’t put you into remission, the next line of defense for my type of cancer is immunotherapy.  Immunotherapy uses drugs that work with your immune system to help your body fight and kill cancer cells.  Keytruda was just approved for squamous cell back in August of 2016.  During its clinical trials it showed positive results in about 20% of patients.
  3. I had my first Keytruda treatment three days ago and I have felt almost no side effects.  Its not toxic like chemo and only slightly increased my fatigue.  No nausea, no turning yellowish green, and no mouth sores.
  4. I’ll do a Keytruda infusion via IV once every three weeks.  It takes about 45 minutes (compared to about 5 hours with chemo).
  5. I’ll have a follow up scan in 3-4 months where they will compare the size of the 5 tumors in my neck and one in my tongue.  They will also look for any additional spread and see the impact on my hodgkins lymphoma.  If Keytruda works, it should help both cancers and it is unlikely I’ll need to do chemo for the lymphoma.
  6. There is no time table for Keytruda.  Since it is fairly easy on my body, I can take it indefinitely as long as it is working.  Some patients who have taken this drug for other cancers have done it for 4-5+ years.  My understanding is that some of the patients in the 2016 clinical trial for squamous cell are still taking the drug and its been over 3 years now since the trial started.
  7. I’m actually pretty optimistic about this treatment.  I’ve read a lot about immunotherapy treatment outcomes and when it works, it seems to work really well.  If this doesn’t end up working, we still have a few other options.

So what does this really mean for me?

Look, even if radiation / chemo had worked and left me in remission from squamous cell, this is a fight I was going to be in my whole life.  Having to continually fight cancer my whole life is my reality.  I’m understanding that better now.  It’s always going to be there and I’ve always got to be ready for the next stage of the fight.

We don’t get to know the end from the beginning.  We don’t get to know which will be the fastest, most efficient path to healing before we start the journey.  There is uncertainty and unknowns at every juncture.

So were the previous 5 months of treatment pointless?  The radiation made my teeth way whiter and I no longer have to shave my face since my facial hair is permanently singed off.  Were those the only two lasting results from my treatment?

No way.  Not even close.

Regardless of what the treatment did or didn’t do to my cancer, the experiences changed Camilla and me forever.  One of my friends asked me last week what we have learned through this experience and I think Camilla put it best:

Trust in God.

Last year Camilla and I would have told you that we believed in God and His plan for our family.  And while it would have been with conviction and sincerity, our declaration of faith would have come from a perch where for the most part “God’s plan” seemed to be exactly what we would have picked out for ourselves anyways.

But what’s your faith like when it seems like the direction God’s plan is taking you is not what you would choose?  In fact, it’s like the exact opposite of what you would choose?  Do you still believe?  Are you still devoted?

What this experience has taught us is that our faith in God and trust in his plan IS NOT dependent on everything in our lives working out like we want.  I believe in God’s miraculous healing power and whether or not I see it in my own situation does not make it any less real to me.  He is the Almighty and All Powerful God who is also my loving Heavenly Father that knows me personally.  Not getting my big break with cancer after five months does not change that.  We are still “all in” with God and His plan.  We don’t know how it will work out, but we TRUST it will work out.

So would I do the treatment all over again if I knew from the beginning it wasn’t going to work?

Heck no.

I’m not an idiot.

But having gone through it already, I’m grateful for the people that we’ve become through the process.  It’s preparing us for this next stage of the fight.  It’s on.

 

PROGRESS!

It has been ~30 days  since my last radiation treatment and 12 days since my last chemo treatment and my body is starting to do it’s thing — heal.  Playing off the analogy from the last two posts…the burrito has been out of the microwave and on the counter for a few minutes and has cooled off enough to eat.

The mouth sores have all healed and I only have two small spots right now giving me grief.  While my throat is still sore but I am able to swallow again.  The secretions and thick mucus has dramatically decreased which helps me talk more clearly and not have to constantly slip out of sight to hawk loogies.  I can feel my energy levels slowly picking back up and I’m sleeping pretty well.

So basically I feel like a total boss right now.

While it feels good to “feel good”, it feels better to be progressing.  The last round of chemo was really tough.  My mouth was a wreck but I was noticing signs of progress.  It was like I fighting for every inch of progress and I had gained five feet of ground.  And then the wave of chemo hit me and drove me back fifty feet.  It was discouraging but now we gritted through it and now I feel like we are winning ground again, rather than having it slip away from us.

I know there is a difference between feeling  better and getting better in my case.  I still have cancer.  I still have treatment to go through.  I still have a long journey ahead that we hope ends with the word remission.  But a few weeks of feeling better certainly strengthens the resolve to keep fighting to get better.  

The most outward signal of my progress is that I’m swallowing again and able to eat some foods.  For the past three days I’ve been able to eat soups, eggs, soft cheese, hot dogs, and drink liquids.  Me and Maruchan are becoming well acquainted.  How many ways can you prepare ramen?

The food progress is exciting but I’m trying not to get ahead of myself.  I’m trying to eat about 1000 calories a day and then do about 1000 calories through the feeding tube during the night.  I can’t really taste much but between the aromas and just pretending I can, food is starting to become that happy part of my life it used to be.  I’m going to enjoy gaining every single one of those 30 pounds back.

While my body is healing, my soul continues to be strengthened by so many people and in so many ways.  There were several profound discussions and discourses today at my Church.  It really is a place of healing.  One of the discussions that was personally impactful was regarding prayer and had me feeling overwhelmed with gratitude for the never-ceasing prayers that are being offered on my behalf and on my family’s behalf.

Several times a week I bump into someone or have someone reach out to say something along the lines of, “We still pray for you daily.  We aren’t stopping.”  All of the little kids in the neighborhood know me by name and come up to me to ask how I’m doing after telling me that they are still praying for me.  If I’ve got the faith of these amazing 4 year old’s in my corner, I can keep fighting this monster indefinitely.  The power of prayer has been constant and real.  Not sure how to adequately articulate how it has felt, but you know it for yourself so it can go unwritten.

It will be a quiet upcoming 2-3 weeks.  I’ve got a few normal check-ins with doctors and then the PET / CT Scan the second week of May.

Doing what is most important vs. doing everything I want to do

“When you cannot do what you have always done, then you only do what matters most.”

Robert D. Hales

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This weekend my second oldest daughter was baptized.  We had lots of family travel in from Virginia, Arizona, and Southern Utah to join with us and other family and friends here in the Salt Lake area.  It was a fantastic weekend.

It was also a really hard weekend.

My favorite weekends are ones filled with family, food, board games, and catching up on everyone’s lives that we don’t get to see very often.  Hours on end of visiting and laughing and hanging out.  That is my jam.

But, this weekend was a reminder that while I’m making progress, I still have a lot of recovery to go until I can be back to myself in settings like that.  The hardest thing right now is still the thick, ever-present mucus in my throat and mouth.  I constantly feel like I’m gagging and it is really tough to talk for any extended period of time.  My throat fills up with mucus and I need a spittoon to hawk a loogie or my mouth suction machine — neither of those options really make for good party tricks.  The mucus, plus some extra fatigue I felt this weekend, kept me out of many of the festivities….but not the most important ones.

I had three goals this weekend:

  1. Baptize Lucy (required being in the font with water up to our waist and saying a 20 second prayer)
  2. Give Lucy the Gift of the Holy Ghost (2nd part of baptism, required giving a prayer that is usually a couple minutes long)
  3. Share my testimony about God in our church service (once a month in my church they have “open mic night” where anyone from the congregation can share their personal convictions from the pulpit)

Those three things were what was most important to me this weekend and gratefully I was able to do all three.  When I was feeling kind of sorry for myself Saturday night after missing out on a lot of the fun with the family throughout the day, I remembered the quote at the top of this blog post.

“When you cannot do what you have always done, then you only do what matters most.”

 

If you remember the burrito analogy from last blog post, I have definitely felt things cooling down since taking it out of the microwave (radiation) three weeks ago.  Most of my mouth sores have healed and most of the skin on my face and neck has peeled off like a sunburn.  You’ll notice on the pictures from the baptism that there is a dark hue to the skin on my face and neck.  I’m told that fades with time.

I am drinking water now, although it is still pretty painful to swallow.  I’ve tried different juices, gatorade, and a few types of food but all have burned the throat pretty badly and seem to agitate it enough that the mucus and coughing gets worse for an hour or so afterward.  I’m just sticking with water for now and hoping toward the end of this week to try again with food and smoothies.  I’ve got an appointment next week with a swallowing therapist to help me get back on the right track.

Importantly for me, I have been able to reduce the intake of pain medication without things getting unmanageable.  I used to wear a fetanyl patch on my arm which gave me a steady flow of narcotics and I’d take oxycodone on top of that at night and sometimes during the day (it was pretty heavy stuff!).  I’ve moved to ibuprofen during the day and oxycodone at night, and as of Friday morning I’m no longer wearing the fetanyl patch.

So the burrito is cooling down but now it is time for another big chemo dose on Wednesday.  I guess that is analogous to taking a big syringe of Chulula and injecting the burrito.  Whoever ends up eating this thing is in for a big surprise!

This Wednesday might be my last dose of chemo for a while.  I will get a PET / CT scan about three weeks from now to see how things look.  That’s a momentous scan for us.

Now excuse me while I watch my Cubbies raise their 2016 World Championship Banner on ESPN right now!

 

 

Lots of reasons to Fly the W

A small sample of the “W’s” people have shared with me.  It’s been fun to surround myself with this symbolic reminder of finding small victories everyday.  


The radiation burned me a new hairline.  My hair stubble usually goes down another 3-4 inches (well below the bottom of my ear lobes).  I have no explanation for the “horshoe pattern” up on top 😜

I am feeling better.  The progress is slow but it is noticeable and it is happening.  My body bounced back so quickly from surgery I was hoping I’d see the same thing with radiation and chemo.  That hasn’t been the case but I am moving in the right direction. I still can’t eat or drink so the feeding tube is my nutrition source.  My weight is bouncing around from 160-165 but is stable.  The other day Camilla said that I look like I’m wearing someone else’s clothes.

I am a full TEN DAYS post radiation treatment.  My 33rd and final dose was last Tuesday.  I was told that coming out of radiation is like pulling a burrito out of the microwave — it’s going to stay hot for awhile after finishing its time in the cooker.  I have noticed some small improvements in my mouth and throat, but for the most part I am still cooking. The mouth sores haven’t cleared up but they are a little less painful. The most challenging part has been the thick mucus build up in the back of my throat that makes it difficult to talk and almost impossible to sleep.  I can typically get about 45-60 minutes of sleep before waking up needing to clean out my mouth and caugh up so gross loogie.  


Last radiation treatment, some of the family came to cheer me on.  You can kind of tell in this picture that the skin on my face around my mouth and lower cheeks is darker.  It looks like I was out skiing all day and got a really bad sunburn below my goggles.  If only!

I have my last round of chemo on April 12th.  A few weeks after that we will have a PET / CT scan to see how all this fire and poison has done at killing cancer.  

Last night I was kind of at my wits end — sleep deprived, mouth on fire, and on the front end of yet another sleepless night.  I just didn’t know how I could do another night like the past 2-3 weeks.  I offered a prayer that God has heard from me a hundred times.  Please, oh God, provide me strength to endure well and give me relief from I can no longer bear.

He answered.  

For me, it was a clear and personal and unmistakable answer to prayer.  I still woke up several times and still had to take my pain pill in the middle of the night, but I had two extended periods of sleep that were both about three hours long.  And best of all, when I woke up I felt like me.  I didn’t have to go through my morning routine of giving myself a pep talk and persuading my body to get out of bed and conquer the day.  I just woke up and it felt like a normal morning.  Normalcy has been what I crave and God knew it and he gave me a glimpse of it.  

Maybe a corner was turned and tonight and every night going forward will be easier.  Or maybe not.  Maybe I’ll gag my way through a rough night tonight.  Either way, I’m grateful for the answer to prayer last night and all the other countless blessings we have received.  We have never felt alone through this experience, especially when we’ve needed it most.  

Fly the W.

Join “Team Jarem” on the Huntsman 140

A friend of mine from work (Chris Madsen) is leading the effort to have a “Team Jarem” in the 2017 Huntsman 140.  When he told me about everything that people have been doing to prepare for this I was really touched.  I told him that I wanted to share this opportunity with other friends outside of work and he was happy to welcome as many others onto the team.  If you are interested, come join the fun!

What is it?  The Huntsman 140 is a fundraising road cycle event that raised $500k last year for the Huntsman Cancer Foundation.  There are 4 different distances that you can choose to ride — 30, 55, 75, or 140 miles.

How do I register?  If you’d like join us, you can register on the team site at Team Jarem Huntsman 140

When is it?  June 17th, 2017

Where is it?  All distances finish at the same finish line at Fort Douglas on the University of Utah Campus.  The starting point depends on which distance you ride — see details here Event Guide

How much does it cost?  It is $85 per rider.  Everyone that rides (and even those that don’t) are encouraged to fund raise and generate extra support, although this is not a requirement.  There are rewards for various fundraising levels:

  • $100 — Huntsman 140 TShirt
  • $500 — Huntsman 140 Cycling Jersey
  • $1,000 — Huntsman 140 Bib Shorts
  • $1,500 — First 50 to reach this level get a guaranteed (not comped) registration for Lotoja 2018

How can I get involved if I don’t want ride?  The Huntsman 140 event staff is always looking for ride day volunteers (Volunteer Registration).  You can also donate to the cause without registering to ride (Click on General Team Donation Here).  You can also contact Chris Madsen (chris.m@truhearing.com) who is leading our team’s efforts and he might have other ways for you to get involved with our team.

I don’t know what my involvement will be yet on June 17th.  I know I won’t be riding a bike 🙂  I do hope to be at the finish line when people are finishing their rides.  I’ll post more information and details as it gets closer, and if you register for our team you’ll get more communications through that channel.

Holding on just a little longer


I sort of feel like this poor sap right now.  I’m trying to waterski but can’t get up.  I also refuse to let go of the rope, so the boat keeps dragging me.  I’m not letting go even though I know there is no way from this position to pop up on my skis.  So I will just enjoy the oxygen-less ride under a foot of water a little longer until the boat driver cuts the engine.  

I finished my 30th session of radiation today!  That was originally my full dosage but about half way through treatment when they determined my cancer was not acting right they increased me to 33.  Only.  Three. More.


You’ll notice that my skin is very dark around my mouth and cheeks.  It’s like that all the way down my neck and to my clavicle too.  The radiation essentially sunburns you on both the outside and inside of any area it is shot at.  

This past week I was left with only a very scratchy, whispery voice.  It hurts to talk so I did very little of it this week except for one night when I met with friends that I made in Puerto Rico that were in town.  

The mouth sores are everywhere so I typically have a mouth full of pebble ice that helps numb and cool an otherwise painful region.  The throat has been too sore to swallow anything other than water / melted ice and even that now has become a challenge.  I’m on several different pain meds that help quite a bit, but each come with various levels of side effects that render me pretty useless outside of my recliner.  

The weight has stayed pretty consistent now for the past week between 163 and 166.   The feeding tube isn’t helping me put on weight but has definitely helped me stabilize.  

The kids come up to my room each night and sing to me and say their prayers with me.  They have been so sweet and strong through this whole thing.  

Lastly, while I can’t eat or drink I still crave lots of things.  I made list of all the stuff I will plan to eat when my mouth is in shape.  Ice cold anything sounds good all the time!  Even just the smells of certain things have been really “appetizing” so a few times this week I’ve cracked open a vanilla root beer and just smelled it over the course of an hour.  

So I’m basically in survival mode. A few more days. Get through it. Doesn’t have to be pretty.  Find ways to help the time pass quickly.

Thank you fsir the continued prayers, notes of encouragement, etc that always seem to brighten my day.  We got this.  Home stretch.  

Deriving Strength From Others

It has been an intense 10 days!  I finished my 24th radiation treatment today (FLY THE W!) and am feeling better today than I have the past week, but it has been a hard slog recently.

Uplifted

I could write a post everyday about some amazing thing that Camilla does to help me get through each day.  She hates the attention so I’ll follow her wishes by not continually exposing her greatness…but it is International Women’s Day so can I just say it is an honor, thrill, and blessing to have a co-founder in life like Camilla.

One of the silver linings to this experience is that it has reconnected me with friends and family that I hadn’t talked with in a while.  So many people continue to reach out regularly with encouraging texts, thoughtful notes, and gifts — they all seem to get to me at just the right moment and bolster my spirits.  One of my friends at church on Sunday walked up and just gave me a hug and whispered “just wanted to tell you that I love you man”.  It was really simple and really impactful.  Monday of this week was a tough one and “by chance” I had a friend in town from Arizona who was able to spend half the day with me in the hospital as I got fluids through an IV.  I’ve got a few friends coming in from out of town later this month that I haven’t seen in a long time.

The other silver lining is that I’ve met some amazing people also going through cancer treatment.  There are 4-5 people at my daily radiation sessions and 2-3 people at the chemo shop that I’ve started to become friends with.  We root for each other.  We commiserate with each other.  We share tips and tricks to managing side effects.  We talk about our families to each other.  They are so positive and so uplifting to be around.

A rough week

My last post was when I had the misconception that a feeding tube followed by a constant flow of calories would quickly get me back up to my fighting weight and feeling better.  I was so young and naive back then 🙂

I did get a feeding tube placed 10 days ago but it felt like I took several steps backward before I could really move forward.  I haven’t gained any weight back but I have not lost any more weight so maybe the 165-170 range will just be the new me for a few more months.

The actual procedure of getting the feeding tube placed was not terrible.  They basically punched a small hole in the top of my abdomen and inserted a tub that is as big around as a pencil.  The tube extends out about 8 inches from my stomach and has a cap on it.  The tube is semi-floppy and allows me to bend it upward and tape it to my lower chest.  To feed myself I pull the cap off and insert a larger syringe and then pour formula in the top of the syringe, letting gravity pour it into my stomach rather than pushing it through.

A few hours after the procedure and right as I was getting ready to leave the outpatient center at the hospital, I started to feel the pain and the cramps.  The tube goes through the top abdominal muscle and as I cramped the muscle would tug on the new wound.  It was a pretty miserable 24 hours after the procedure but was able to slowly get some “delicious” unflavored high caloric formula in me.

By the time Wednesday rolled around I was getting the hang of things and having minimal cramping.  Wednesday was chemo day and I got a “mega dose”.  I usually get about 80 ML of my chemo drug and this dose was ramped up to 200 ML.  The good news is that the new dose is only given once every three weeks so it gives me two weeks chemo-free.  I could really feel the impact of the higher chemo dose.  Mouth sores were worse, fatigue was more intense and lasted much longer (still feeling it!), and I’ve had some nausea.  For the first time during treatment I threw up…and threw up….and threw up.  I’ve got good meds that mostly control the nausea but sometimes I just gag on all the junk in my mouth and lose all the hard work I put in on the feeding tube during the day.  I spent a few hours on Monday getting some fluids via an IV to stay hydrated and I’m doing lots of water and pedialite through the feeding tube.

I know I’m a broken record on this, but it is just so important — stay present, stay in the moment, face today’s issues and don’t worry about tomorrow or next month.  That’s my goal!