Health Update #32: Travel and Treatment

Nighttime Skyline in Chicago

If you missed the last two blog postings, they are here (Comfort and Joy) and here (Change of Plans from Phase 1 to Gemcitabine).

The other morning for breakfast, I had yogurt and granola with Skittles, M&Ms, and chocolate chips. It’s quite colorful, like something out of Elf. I’ve never really been much of a sweets eater, but here I am. 

From the most recent CT scan a couple weeks ago, I still have no brain mets. A clean brain. A good thing. That’s one thing they keep watching out for in the CT scans with each course of chemo. But the latest CT scan did reveal, among other things, a 4 cm metastasis to my left supraclavicular lymph node at my shoulder and neck. That’s a golfball-size mass in the lymph node at the crook of my neck leading to my spine, pushing on the left side, and radiating out to the shoulder and down the left arm. It’s causing quite a lot of pain. They’ve (I’ve) increased the dosage of Hydromorphone (an opioid slightly stronger than morphine). I started at 4 mg every 4 hours. Then 8 mg. Now 12 mg, plus another drug that addresses nerve pain, but also causes drowsiness. 

My overall goal at this point has shifted slightly, from comfort and joy (though that’s still there) to being as present as possible through pain relief that addresses distraction from pain, but also other meds  that increase alertness (Ritalin, steroids, etc) so that I’m not distracted by drowsiness in the morning and afternoon. Essentially, what used to be called a speedball. 

One of the side effects of long term high dosage opioids is craving sweets, which is why movies and TV shows usually depict heroin addicts as craving candy or chocolate. Luckily, I’ve got the means to purchase all the sweets and pain relief I need without needing to rob people on the streets or worry about overdosing because of a lack of medical supervision. The sweets add a little bit of joy to each day. And the meds a little comfort. You wouldn't know that I am on this cocktail just from talking to me. Because of the intensity of the pain and drowsiness, the medications have little effect on my judgement and coordination. So says my oncologist.  

So, I have eighteen days in Northeast Louisiana to spend time with my folks. I’m feeling great as of a few days post chemo with this speedball concoction of morphine (hydromorphone/fentanyl), amphetamine (Ritalin), and steroids (dexamethazone) and a few other additional meds for pain or fogginess. I could have flown to Monroe myself, but no need to tire out my arms. (ba-dom-pah!) My oncology team and palliative care doc and pharmacist really came through in making adjustments to the meds so that this would be a good trip so that I could be present.

I had 4 days with Greg in an AirBnB in Monroe to hang out with him and see other friends and the folks. That got me through the initial period of possible side effects, but so far, those side effect seem to be fine. 

I've now transitioned to my parents' house to get some alone time with them, although also have time for visitors on occasion, especially to meet up with childhood friends.

Then for the final week (next week), Pris will fly in on Tuesday and  Corrine on Friday and my brother and his family on Saturday and we'll have a couple days of all being together for that weekend to celebrate Father's Day, my parents' 64th anniversary, Corrine's past BD, my SIL's BD, my BD, my baby brother's BD, Paul Howard's upcoming BD, Pris's upcoming BD, and my dad's upcoming 91st BD.  So, that Saturday/Sunday (6/22-23) will be pretty crowded with immediate family. Comfort, joy, and presence.

We've staggered our return flights -- Pris on Sunday the 23rd, Corrine on Monday the 24th, and me on Tuesday the 25th. Those last two days Corrine and I will be back in my folks' house after Pris flies out. 

I have a lot of procedures when I get back and should be back up to speed by the end of July with the pain pump and radiation to my supraclavicular lymph node and a few cycles of gemcitabine before possibly switching over to the Phase 1 trial. Visitors are always welcome in Chicago, of course. We may need some help juggling all the procedures. 

The weekend before I left Chicago, Corrine and I spent the night watching the grandbaby Otilia, exploring toy motorcycles, stuffed animals, and bathtub toys. Joy, comfort, and presence. 

Monkey Hat by Otilia during bathtime 





Broken baby toe two nights before my trip.
Luckily, I don't feel a thing.





Comments

Sarah said…
I hate that modern medicine doesn’t seem curative for you. I am very grateful for anything that brings you some relief whether those things are pain meds or the love of your family and friends. You are so, so very loved.
June 14, 2024 at 3:20 PM
Marshall Kitchens said…
Thanks, Sarah! So good to see you.
June 14, 2024 at 3:25 PM
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