When the last two posts coincidentally had musical references, I told Kimberly that the next post didn’t need to have a musical link. That said, as I think about writing a post to capture how I’m feeling right now, and sum up the activity this week, I’m recalling the lyric of the Elvis Costello song in the title:
Welcome to the workin’ week.
Oh I know it don’t thrill you, I hope it don’t kill you.
Welcome to the workin’ week.
You gotta do it till you’re through it so you better get to it.
It’s hard to comprehend that just two weeks ago tonight I was in New York City. Since then I’ve had three teeth extracted, a PICC line inserted, my first dose of cetuximab, a PEG tube inserted, final measurements and films taken for radiation, my second dose of cetuximab, and two days of twice-daily radiation treatments, four sessions in the machine, total. (And yes, I do owe you a post describing that particular sci-fi medieval scene.)
I’ve not only started the treatments, I’ve started the treatments FOR the treatments. I’ve started showing the first signs of the cetuximab side-effect rash, so I’m applying hydrocortisone cream and slathering myself with moisturizer. Also to fight the rash, I’ve started taking minocycline, an antibiotic, and tonight I started the omeprazole that we hope will help me tolerate the effect the minocycline has on my stomach. On my way home tonight, I bought a fresh tube of the low-irritation toothpaste I use, which is recommended for dealing with radiation mucositis, and I’ve been regularly swishing my mouth with the buffered saline rinse Kimberly made up using the formula from the radiation clinic.
I’ve also been preparing for the upcoming weeks on the job. After a Costco run, I now have a good supply of nutrients to go down the PEG tube. Since the physician assistant at SCCA suggested it, I grabbed a few liters of coconut water, which she says can be used to flush the PEG tube while providing a good balance of electrolytes. I picked up the mega-box of hydrocortisone ointment, in case this rash gets bad. And I priced the cost (astonishingly cheap) of another computer monitor for the office, in case we needed to augment our ability to have Kimberly working at home sometimes.
I wrote the paragraphs above on Friday night, as I was winding down. Shortly after, I went to bed early and slept for a long time. Today, Saturday, I’m feeling even more like it’s the first weekend after starting a demanding new job – I’m worn out, and feeling really tired. Except for a blissful period early this morning, snuggled in bed with Kimberly and our cat Sergei, when all the various treatments and side-effects were in synchronous balance, I’ve felt pretty crummy today. Today I’m noticing the first problems with my appetite, and I’m rediscovering what it feels like to force yourself to eat. (This led to some adjustments in this afternoon’s list at the supermarket. I was interested to see that Pepperidge Farm has greatly expanded the Milano cookie line since the last time I was forcing calories. Double chocolate seemed like a good start.)
All of which is a long way of saying we’ve really started treatment now. I can feel, in a visceral way I haven’t up until now, just how badly this is going to suck.
Intellectually, I’m sure that if I can get some real food and liquids in me this evening, I’ll start to feel better, and another night of sound sleep will help. Tomorrow I’ll mostly take it easy, and work on recovery. And then Monday we’ll start again.
Next week we’ll start the regular pattern: two radiation sessions a day on Monday and Tuesday, then the big day Wednesday, with both radiation sessions and a cetuximab infusion, plus appointments with the rad-onc doctors and the nutritionist and the med-onc nurse. “Just” radiation twice each day on Thursday and Friday. The working week.
But worrying about that can wait until later. Right now it’s Saturday night! (S-A-T-U-R, D-A-Y, oh, never mind. Not another musical reference.) Time to go see about that ‘real food and liquids’ bit. Kimberly’s cooking dinner, and I’m actually feeling a little bit hungry.