First week of radiation, chemo, and trying to stay PRESENT

We are wrapping up the first week of radiation and chemo treatment.  5 radiation treatments, one each morning, and 1 chemo treatment on Wednesday afternoon.  It’s “comforting” to know that whatever we can’t destroy with the blow torch (radiation), we’ll get by poisoning (chemo) the ground water…there’s like a hundred other metaphors for this treatment so pick your favorite 🙂

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First chemo treatment.  I’m the only dude under 70 getting chemo at my facility so I didn’t get as many laughs from shirt as I was hoping for.

 

The short version of this week’s treatment is that it was manageable.  I feel blah.  Not bad, just blah.

The most noticeable side effect has been the fatigue.  I felt it hit about 24 hours after chemo (Thursday afternoon) and then it hit even heavier after 48 hours (this afternoon).  I have also felt queasy, but not fully nauseated.  I’ve got 3 different anti-nausea medications running through me and I can feel this battle going on in my gut — the body wants to be sick but the meds aren’t letting it.

I’m just starting to feel the radiation effects…parts of the tongue feel like I sipped hot chocolate that was way too hot and I can feel the start of a sunburn on my neck and jaw line.  There has been some increasing fatigue as well with each successive treatment.

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TruBeam radiation machine in the background that rotates around me 360 degrees while I’m strapped into the movable bed that you see on the right of the picture.  The placement of the bed, the measurement of the dosage, and the path the machine takes around my face are all meticulously calculated.

 

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Getting all snuggled in on the bed.  I’m strapped in like this for 5 minutes or so during each treatment and its not as bad as it looks (they have a U2 pandora channel playing to calm your nerves).

 

What I’ve struggled with this week is keeping my mind in the present.  During the surgery recovery I could focus each day on a few small steps forward.  I could feel my body making progress and that helped keep my mind in the moment rather than getting overwhelmed by the entire treatment process I’m facing.

Chemo and radiation feel like the opposite of recovery.  Every day feels like a small step backward, physically.  I know that the side effects are cumulative and that the worst I will likely feel will be at the end of the sixth week.  So it’s tough to not take what I’ve felt during the first five days and extrapolate to how bad this is going to get.

What has really helped me this week is trying to maintain whatever normalcy I can.  Taking the kids to school.  Going to work for part of the day.  Eating dinner with the family.  Reading lots of articles about the Cubs.  Listening to Camilla describe her CrossFit workouts (what is a thruster?).  All those things make me feel normal and happy.

Some passages of scripture this week really helped my mindset — none more so than Ether 6:1-12 (scripture from the Book of Mormon).  While the effects of chemo and radiation treatment might feel like I’m moving backwards,  I realize that it is actually pushing / pulling / driving / pounding me toward the ultimate destination.  There are no speedboats or cruise ships on this ocean voyage.  This is about loading up in the wooden barge and hanging on for the ride as the Lord blows the wind and waves toward the promised land.

Feels like I should get a Caribbean cruise booked for when this is all over.

Prepping for Radiation and Chemo 

My parents and siblings made t-shirts with the equation that we are trying to prove true.


My beauty mask, custom made.  Keeps the face in the right position for the radiation treatment.


My arm 29 days after surgery.  It is seldomly painful and healed up pretty nicely (see the previous picture 15 days after surgery).  As expected, the arm is still pretty weak, but so is my good arm 🙂


My favorite quote of the week:

Without adversity, we may tend to forget the divine purpose of mortality and live our lives focused on the transitory things of the world.

Ronald Poelman
The past ten days or so have been great. I feel well and have spent lots of time with my wife and kids. Trying to keep up with Camilla’s busy schedule and all she does for the kids almost had me wondering if I needed to check back into the hospital. I finally told her this week that I needed to go back to work so that I could get some rest.  

Monday (2/6) starts the next phase of treatment.  I will go to radiation therapy Monday through Friday for six weeks.  I slip into the mask pictured above which is then bolted into place on the table.  The radiation machine will shoot beams into all the areas that have been programmed into the computer. In this way they can be extremely targeted and accurate in what they scorch.  One treatment lasts less than ten minutes.  

I will be doing chemo therapy treatments once a week for six weeks in addition to the radiation. This will improve the effectiveness of the radiation (and amplify the side effects).  No pain no gain, said someone once… The chemo is administered via an IV that they put into a port I have in my chest.  It takes 3-4 hours for one treatment.  Time to rewatch the World Series (for the third time).  

I have always loved to read, and the time away from work I have had this month has reacquainted me with that hobby.  Some favorites that I read the pst six weeks:

  • How will you measure your life by Clayton Christensen
  • Shoe Dog by Phil Knight (Nike founder)
  • Screwtape letters by CS Lewis

And there is no better TV out there than the 30 for 30 ESPN series.  Thank you Bill Simmons.

Every time I have gone to search for answers or inspiration I have found some awesome passage in scripture or published talk from one of my church’s leaders.  What a time to be alive where information is so readily available. My favorite talk this week was listed above by Ronald Poelman.  

Gratitude & Homemade Butterfinger Ice Cream

Gratitude is a mark of a noble soul and a refined character. We like to be around those who are grateful. They tend to brighten all around them. They make others feel better about themselves. They tend to be more humble, more joyful, more likable.

Joseph Wirthlin

These next two weeks are kind of like the calm before the storm.  Radiation and Chemo Therapy start two weeks from tomorrow and so my main goals right now are 1) to let my body continue healing from surgery, and 2) to fatten up.  Thanks to so many of you that are helping me on the latter.  It has been cheesecake, cookies, shakes, M&M’s, and ice cream mixed with “eating spacers” like pasta, bread, oatmeal, soups, pizza, and pork sliders.  I’ve got goals people.

On my two week post surgery date (January 19th), we took treats and thank you cards back to the ICU where nurses and doctors took care of me around the clock for my first 3 days in the hospital.  As a token of our appreciation for keeping me alive, we stocked their break room with homemade butterfinger ice cream….so basically, we are even now.

Tammy was the only person there when I went into the ICU break room.  Tammy took care of me from 7 pm Saturday night to 7 am Sunday morning 48 hours after surgery.  It was my last night in the ICU and right before she came on shift my pain broke out and was almost unbearable.  I was miserable for several hours until she received approval to set me up with PCA hydromorphone (an extremely powerful narcotic delivered through my IV with a button that would let me get another small dose every 10 minutes).  Pain problem solved.

As I put the ice cream on the break room table I said, “Hi Tammy.  Do you remember me?”

“….oh hi there….”  She had no idea who I was.

“It’s me, Jarem.  You took care of me about 10 days ago in room —-“

“Oh my gosh, Jarem!  Are you serious?  Look at you!  I didn’t even recognize you.  Oh my gosh….no staples! your face! you are walking around!  Look at you!”

As we talked for a few minutes Tammy told me that she really felt sympathy for me during that long Saturday night we passed.  She got emotional when she told me, “I just really wanted you to do well.  I was pulling for you.  It means a lot to see you like this.  I’m so happy for you.”

We talked for about five minutes and I was able to thank her for caring for me and how a patient can feel it when a nurse was really pulling for them.  I needed to be able to say those things more than she needed to hear them.  She is an amazing nurse and she knows that and she doesn’t even blink when she sees a sedated case like mine roll through the ICU doors.  It felt good to say “thank you” and genuinely express gratitude.  It always does.

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I don’t know the best way to express my gratitude for what my family has received from so many people during this experiencde, but I don’t believe there is a really a wrong way to do it either.  My preferred approach would be in-person and one-on-one conversation like I had with Tammy.  To me, there is something so cathartic about those types of interactions, and I look forward to having many more of them.

But this approach isn’t possible with the hundreds of people for whom we feel gratitude — whether for your prayers and faith, notes of encouragement, help with our kids, or just helping us do life with all this stuff going on.  Our goal will be to become more grateful human beings, like Joseph Wirthlin described.  To brighten all around us.  To make others feel better about themselves.  To live in thanksgiving daily.

And we will also increase the output of our homemade ice cream machine.

Speech Impact 17 Days After Hemiglossectomy

17 days after having 40% of my tongue removed (“hemiglossectomy”) and reconstructed with​​ tissue and arteries from my arm (“free flap”), I have what I consider a very minor speech impediment and it’s getting better everyday.  

Compare this video to the one I posted 72 hours after surgery which was the first time I felt like I could speak and others would understand me without having to continually repeat words.  

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.