Health Update #30: Comfort and Joy

Papa's Chair

May 23, 2024

The last 3 weeks between infusions have probably been the best for me in a long time in terms of dealing with side effects and being able to visit with family and friends. Lots of quality time -- eating, drinking, hanging out, pleasant naps in the afternoon, short walks, longer drives. A visit from Cornelia with lunch al fresco at the Hemingway Bistro in Oak Park, Illinois. A long, first class flight on Delta down to New Orleans to spend a week with my brother and his family. A lot of quality time with my granddaughter Otilia. It's all gone remarkably well, given a Stage IV diagnosis. 

For this last appointment, it was time for a CT scan to check on disease progression. I had to drive an hour and a half, practically to Rockford, to climb into an available CT scanner last Wednesday. I still can't lift my right arm over my head, so that was a bit of a struggle. They finally let me leave it by my side.

By Friday, I had seen the results in my online chart, but wasn't sure what to make of them. All of the tumors that had been radiated -- lung, humerus, brain, rib -- all of those tumors were dead or dying or had shrunk or otherwise stabilized. The one site of metastasis that had not been radiated -- the three spots on my right kidney -- had grown. The CT scan showed right renal cortical lesions with interval worsening, 3.6 x 3.3 cm (previously 2.5 x 2.8 cm); 2.1 x 2.7 cm (previously 2.0 x 1.6 cm); 1.5 cm (previously 0.9 cm). All of the other sites were stable with progressive healing of the lytic right 6th rib lesion. Is this good or bad? I feel like I get mixed messages about my renal mets.

At the scheduled Pemetrexed infusion last Friday, when Dr. G walked into the exam room and saw me sitting alone, she asked me where my partner was. I told her that Corrine was with her sister in upstate New York and would be back for the next visit. She asked if we could get her on the phone. That's not a good sign. I got through to Corrine and put her on speakerphone. 

Dr. G has a friendly, calming effect. She's my age or a little younger and is quick to smile even though you can only tell by the way her eyes crinkle around her mask. She's efficient and fast, though never seems rushed. She delivers bad news matter-of-factly, but empathetically, and refrains from offering false hope. 

Looking over the CT scan results, she noted the areas where the tumors were arrested, but said unfortunately, the results showed evidence of disease progression with increased size of the renal mets. She was concerned that the Pemetrexed is not working, given the progression. But because I have a low volume of disease overall, she said that she would discuss my case at their thoracic tumor board the following Wednesday (5/22) to see if there's any role for local control with radiation therapy, since the remainder of my disease is stable. They're reluctant to radiate the kidney (and ruled out surgery) because the risks could outweigh any potential benefits. She clarified that even then, radiation would simply address the symptom, not the underlying cause since the metastasis is a sign that the cancer is systemic, that it's in my bloodstream, and that they'll eventually need to go back to a systemic treatment, which would either be Gemcitabine which has a 20% efficacy rate or a Phase 1 trial with a new drug. 

Dr. G cancelled the Pemetrexed session that day due to the disease progression. It’s hard to tell how effective any of the chemo has been, but all of the radiated spots are either dead or dying or shrunk or stabilized, but each chemo cocktail cycle -- Carboplatin, Docetaxel, and Pemetrexed -- has been halted because of disease progression. I have to wonder if the chemo has done anything at all, but surely it's played some role in the disease not spreading further so far. I have an appointment with her on Friday to talk about next steps — either continued chemo with a final cocktail option or targeted radiation on the kidney or take a break for a while and just focus on lived experiences.  Of course there may be other possible options, such as a new Phase 1 study or stem cell therapy or a round of Keytruda. We just have to see how things go with the tumor board.

I feel tired all the time and I am in a good bit of pain, but I'm maintaining my weight and feel like generally I'm in good shape. I'm out of bed for the majority of the day. My skin is pink. The sites of metastasis are relatively localized. Even the pain isn't unbearable. I feel like I've been lifting heavy boxes all day to the point where I'm stiff and sore. My pain management has been much better. I've tweaked my meds for the Dilaudid side effects and started using a heating pad for my lower back, which has allowed me to cut back a bit on the Dilaudid itself. The relief from the heating pad has been amazing. I finally broke down and requested wheelchair services in the airports while travelling and it made a huge difference. I could have walked with a cane, but I would have been exhausted when I arrived at my destination. 

I asked Dr. G to hold off on scheduling anything during 3 weeks in June so I can visit family and friends in Louisiana. Probably a good thing because I won’t be dealing with the side effects from the chemo. I have a trial scheduled on 5/30 for an intrathecal pain pump, and if it goes well, will schedule surgery after I get back from Louisiana. They'll insert a catheter into my spine, tunnel a line round my waist, and implant a computerized pump under the skin over my abdomen to drip a small amount of morphine into my spine over a three month period before the bladder needs to be refilled in the doctor's office. Because it goes directly into the spine, they only have to use 1% of the dosage that they would with an oral morphine, so it eliminates side effects such as the drowsiness and constipation and hazard of overdose. 

I’ve had lots of quality time with friends and family and hope to have much more over the next six months. For now, the focus is on comfort and joy. I feel pretty good. We'll see what the options are and choose the one that has the highest quality of life for the longest period of time. 

I'm leaning forward into living with Stage IV non-small cell lung cancer and I feel like a self-diagnosed lucky human.

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