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.
- 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….
- 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”).
- 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).
- 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.
- 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.
- 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.
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?