It Might Get Messy

HMS Beagle sailed from Plymouth, England in 1831 for a planned two-year trip to survey coastlines and islands around the world. On board was Charles Darwin, whose trip was funded by Josiah Wedgewood (an uncle-by-marriage, yes of “those” Wedgewoods) and whose job was to study geology and natural history and provide a suitably upper-class companion for the vessel’s Captain, Robert Fitzroy. 

The trip actually lasted five years. On his return, Darwin settled on a small estate in the English countryside at Downe House with a young family and an inherited stipend (the museum at Downe House is well worth a visit if you can devote a day to getting there and back via train and bus from London. It’s also worth the short hike from Downe House to Down Town (spelled without the final “e”, for some reason) where you’ll find the church which Darwin served as an Elder and financial manager and a wonderful pub with hand-pumped ales and good burgers while you wait for the return bus). As Darwin started to sort his collections and publish his findings, he was taken increasingly ill by mysterious problems, mainly with his gastrointestinal tract. His perplexed doctors could do little more than recommend time “taking the waters” at various spas and increasingly toxic doses of mercury, thought (for gods know what reason) to be a sort of cure-all for mystery illnesses.

Nowadays we’re pretty sure Darwin caught one or more “tropical fevers” while hacking his way through rain forests in South America and the Pacific. And we wouldn’t treat with raw mercury compounds. In fact, the amazing thing about Darwin is that he published his greatest work, and plenty of it, during the years that mercury poisoning took hold and his health deteriorated from the putative medicines. 

Just another reason Darwin is my hero. And he’s also an object lesson for consequences of shaky medical diagnoses.

I actually got a cleanish bill of health from one of my doctors this week. On Monday I had a PET CT scan (remember that’s the one where they inject sugar labeled with radioactive carbon isotope and monitor its uptake on the theory that cancerous tissue metabolism causes disproportionate uptake of the radiotag). The scan had its good and bad findings. For one thing, the big blood clot in my chest is gone, so I can forego the expensive and painful twice-daily injections of blood thinner. I seem to be generally cancer-free. There is a small (less than one centimeter diameter) hotspot on my left lung (I’ve had more and larger uptake spots in my lungs before that proved to be nothing), and my throat area generally took up more radiolabel than other tissues. But that might well be residual recovery from the radiation treatments. It’s not focused on specific loci that indicate tumors.

We’ll know more next week. I see my surgeon, who is the one who pushes the videoscope into my throat and looks for tumor tissue. So far he hasn’t seen any, and that’s why the sugar uptake in my throat is more likely due to generalized tissue destruction vs. recurrent cancer. 

So, for the moment, we’re down to my continuing to rest and recuperate, and treating such residual symptoms as heavy mucous production and discomfort from the powerful antibiotic we’re using to fight off persistent throat infection. At the moment, my biggest challenge (cross-reference last week’s entry) continues to be getting off the dilaudid without incurring withdrawal symptoms. In the past I’ve done this myself, gradually diminishing my dose until I can just stop. I’m doing that now—today I’ll make another cut down to a total of 16 mg per day, one dose around noon and one around 8 p.m. Just in case, Dr. T (general oncology and hematology) has me scheduled to see another doc in her office on Wednesday (when I go to see Dr. H, my surgeon) who apparently helps with this problem and who may have additional advice regarding the constant dripping mucous. 

Which is an artifact of the four long years of repeated treatment. Radiation damages mucous membranes and glands. My right parotid (salivary) gland was deliberately destroyed by my first course of radiation, as it was invaded by tumor tissue. Over the course of several operations, most of the lymph glands north of my belly region were excised, so flow of body fluids in my neck area is contorted. Seems likely I’ll be battling wet, drooling, hacking mucous production for whatever remains of my time on earth.

Of course, that’s a hell of a lot better than the alternative. Hopefully, and against the 80:20 odds, this last round of treatment really has left me cancer-free and tumors won’t recur. But if they do, I’m certainly feeling strong enough to take additional treatment, if and when it becomes necessary. I haven’t fought my way through sequential hellish treatment courses to give up any time soon!

As always, my thanks to you all for being here for me. This update, and probably one at www.aehsfoundation.org, are the only updates this week. But since it looks like I may survive for a while, I’ll be turning my attention back to that urban ecosystems book that’s been on a stop/start foundation for years. Now I’ve got time on my hands, I’m strong enough to work, and I have something of the freedom of an “independent scholar”. Like Charles Darwin. I just have to stay away from the mercury, and I should be good to go!