A Pirate Looks at Cancer

Happy Thursday all,

Just over a week now since the chemotherapy infusion and I’ve gotten to explore some of the inconvenient side effects that come along with the treatment. Nausea was really the most prominent effect at first but in the last few days I’ve come to appreciate a new and more insidious foe, fatigue.

First noticed it on Monday when I was back at the office and around lunch time I was feeling pretty worn down. Lunch-comas are no stranger to me but this was a different kind of worn down, not the usual, I had the energy and used it up or full stomach sleepiness, but more that the energy was never there to begin with and an overwhelming sense of emptiness made it difficult to focus on the words on my monitor or hold a conversation. I found myself slumped back in my chair and gazing down at my knees. Antoine, my desk neighbor (You have to say “Antoine” with a rolling Latin accent though as he was raised in Tijuana and speaks like it, helicopter pilot, nice guy), said I didn’t look like I was having fun and what the hell was I doing there anyways? Check, got it. What I was doing there was trying to continue my life and remain a productive person in it, but more on that later. I agreed I wasn’t doing myself any favors and went home. Moving helped snap me out of the funk, so I was able to walk over and pick the dogs up from daycare and make one of our recipes of the week for dinner when Crystal got home. (Togarashi-spiced Tilapia and Jade Pearl Rice, tasty, good seared blackened-ish crust on the Tilapia)

Tuesday morning I woke up to my alarm and just felt dead. I had slept fine but there was no recharge to the batteries. I laid there for ten minutes listening to Crystal getting ready downstairs before I could convince myself that if I just got out of bed and moved around a bit I’d feel better. My usual 30 minute morning prep turned into an hour and a half before I’d managed to get myself together and out the door. Showing up an hour later than normal to work was embarrassing as the office was already bustling with the day’s tasks and I was behind the power curve, but I received nothing but warm smiles. My CO and office mates have all been incredibly understanding and are honestly going above and beyond what is expected to ensure I have the best possible work scenario during my treatment. There was work to be done as we are coming up on an important assessment exercise on the East Coast next week and we were developing the Concept of Operations for how we would approach the problem and employ our assets. I was glad I came in and gave a hand but by one o’clock I was again just dragging my feet. My head was starting to ache, my stomach was starting to protest, and that feeling of emptiness was an anchor just weighing me down. I figured I had reached my limit and went home, but this time the toll was greater and I pretty much left the night to Crystal who made sure I was staying hydrated and ate something.

Wednesday brought a new definition to tired. Crystal had to be at the VA hospital early so was walking out the door when my alarm went off. I have never felt so helplessly drained, I literally had to give myself a pep talk to just roll over and reach for my phone to turn the alarm off. After another 15 minutes of wrapping my head around how bad I felt I came to the conclusion that I needed one violent motion to get up or it just wasn’t going to happen. After a five-count I ripped the covers to the side (sending my forgotten phone flying across the room to bust into pieces against the wall) and rolled off the bed. I gathered and reassembled my phone, drank a cup of coffee (with an espresso shot included, bless our Nespresso machine), and made it into work again one hour past normal. One of my jobs is to run the weekly update briefings for both our Deputy and Commodore, so as soon as I got to my desk I had half an hour to build the brief and prep the conference room. Brief went just fine but by the time it was over I could tell I wasn’t going to last too much longer. A couple emails and exercise prep conversations later I headed home, content with the system I’d fallen into of taking an extra hour in the morning, get done what I needed to get done, and head home. Not trying to make it into the afternoon left me the energy to make one of our other recipes of the week (Turkey Meatballs and Linguine with homemade tomato sauce and percorino cheese, not bad, I like the homemade sauce not being super thick like bottled sauce).

So Fatigue has been the word of the week, but I’ve found it is pretty hard to express to Crystal how it feels. Both nausea and fatigue are terms that can cover a huge scope, from “maybe I just need to fart” to “I’m going to set the projectile vomit record and then die” and “a bit weary” to “get a wheelbarrow”. I wish we had more terms to describe these sensations, like the whole Eskimos have 50 words for snow idea (Interesting Aside: I recommend Googling “Eskimo words for snow”. It will eat an hour of your day but you’ll find not only a discussion of linguistics but also a pretty scathing take on how imperial cultures screwed up anthropology) I have learned over the past week that if I can’t describe how I feel in adult terms (she does not appreciate onomatopoeia as I do), Crystal is more likely to recommend pills or even hospital visits so it has become very clear that the words available to describe the ideas of nausea and fatigue are failing me.

In other areas of updates: Crystal gave me the final injection of this cycle last night. The Filgrastim injections are to help my body make white blood cells so my immune system isn’t as compromised from the Chemo. One of the side effects we were warned of for this drug is bone pain, and I even have a sheet I have to fill out each day saying whether I had bone pain or not. The nurse said it is often in the lower back but before today I hadn’t felt anything that jumped out at me as fitting so I wasn’t sure what “bone pain” really felt like. Oh man today I am finding out. I woke up with what feels like I took a bad fall and bruised my hip, just a nagging aching on the left side of my waist. That progressed to radiating pain from my lower spine. This feels like I was bent backward and now my whole lower back tenses with each throb and sends the pain radiating up my back, every thirty seconds or so a round of pulses start and get worse over 5-6 pulses and then stop. No way I was going to work like this so I took a few extra pain meds and called in that I wasn’t coming.

It’s really difficult to find a comfortable position, the couch bends the spine and makes it worse, laying down doesn’t help, so far the best I’ve got is sitting with over exaggerated proper posture on a hard dining table chair and riding out each wave (luckily a good position for typing this). Second round of pain meds are starting to take the edge off. So glad the injections are done for the cycle, they are mercifully small needles (27 gauge) but still I cringe every night when injection time comes. Thankfully I have Crystal to make them quick but I’ll never get used to needles…

So far I’ve been lucky with my appetite, it is definitely not at my normal level but especially in the morning I’m able to eat normal meals. At night I eat because I know I should but I don’t feel hungry much past 3 or 4 o’clock. I’ve read of many other patients having to struggle to eat so I’m hoping I can condition myself to accept small meals every few hours whether I’m hungry or not. So far my weight is stable (Crystal thinks I look skinny but she’s said that for years).

I’m still planning on traveling with my Command next week for the exercise in Cape May, New Jersey. It goes for a week and a half but I’ll come back the following Monday to be ready for the next infusion Wed the 22nd. It’ll remain a game time decision and if this pain continues I probably won’t go but I’d like to be there if I can. I definitely don’t need to go and my commanders keep reminding me it isn’t necessary but so far trying to be a productive member of my command is what is keeping me getting up each morning and looking forward to the day. Even if I’m only going in for a few hours it is motivation to shower, shave, put on the uniform and look myself in the mirror and feel normal.

Hayley just shared with me a book she started reading called The Emperor of all Maladies: A Biography of Cancer by Siddhartha Mukherjee and I picked it up as well, in the prologue he gives this account.

Cancer was an all-consuming presence in our lives. It invaded our imaginations; it occupied our memories; it infiltrated every conversation, every thought. And if we, as physicians, found ourselves immersed in cancer, then our patients found their lives virtually obliterated by the disease.

I can see this already happening in the last month, and I want to do what I can to resist it. I may be a cancer patient but I am also a person, a husband, a doggy-parent, a Lieutenant in the (World’s Finest) Navy, and a damn pirate. It can screw with my body but I can choose how much it will screw with my life (especially bad round of back spasms as I wrote that… touche).

So I am being careful, I am taking it easy. But there is going to be a bit of give and take here. But I suppose this is easy to proclaim not even half-way through Cycle 1.

Five more to go.

Hoo-ya.

Crystal looking back on me on our honeymoon on Mt. Rainier, a bit of motivation for myself to get through this so I can get back to doing these things.