Welcome to the Working Week.

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.

9 thoughts on “Welcome to the Working Week.

  1. The song variant I thought of was “The Working Hour” by Tears for Fears — “This is the working hour, we are paid by those who learn from our mistakes.” Or, in your case. you pay those who work on you and hope to God that they don’t make mistakes.

    You two are going to be needing help with transportation, cooking, etc. Let me know when you need help. It would be my pleasure to help. You’re both going to need it now that you’re in full swing. Just let me know. Thursdays and Fridays are universally bad, but let me know how I can be of use on the other days.

  2. just a silly suggestion…they make things called “pedia-pops” a frozen popcicle with electrolytes for kids. Being the big kid you are, and being frozen, perhaps they would have dual usefulness for you? And if they are for kids they would probably be yummy….

    Hang in there…

  3. It’s been awhile since I had both Elvis and the Bay City Rollers in my head!

    May the treatments and the treatments for the treatments be highly effective. May you have many restful weekends of snuggling with Kimberly and the kittehs. May the weeks of treatment zoom by.

    As for Milanos, I don’t think they can top the classic mint, but if you find one of the new flavors you like better, let me know.

  4. Oh dear, not that Saturday song! You love to torture me with that one. :) Hang in there my man.

  5. Is it wrong that i am a bay city rollers fan from way back, but am not familiar with any of the other musical references ? :)

    I think of the 2 of you and what you are going through daily. You are incredibly inspirational and i am in awe of your inner strength. I think i want to be like you when i grow up :)

    My thoughts are with you.

  6. Paul and Kimberly, Thank you for writing this blog. When I read it I laugh and cry and am grateful that you write so beautifully about these extraordinary events. It’s especially generous when you must be exhausted and feeling awful. Thank you.

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