John’s Secret For Dealing w/Cowden’s Syndrome

It’s time I talked about something I’ve been teasing in this space for a while. Cowden’s is an especially insidious illness in that you might never actually develop malignancies (though chances are that at some point, you will), so you want every possible advantage. Consider this, for example: my first colonoscopy showed 150 tumors. That’s no typo. 150. The doctor looked at me and shook his head as if he didn’t quite believe what he was seeing, which I took as a Very Bad Sign.

I just had a colonoscopy last week. The total this time? 3.

Also not a typo.

Be sure I’m grateful when the doctor looks at me after the procedure and says, “Come back in 3-5 years,” but I know now why there are so relatively few tumors now.

Maybe you’ll be shocked when you read my little secret. If you know me, it probably won’t come as a surprise.

My secret weapon’s cannabis, y’all. That’s right. Maria. Mary Jane Goodtime.  The ol’ sticky icky. I hadn’t been smoking for quite some time when I had that first colonoscopy. Now I smoke every day; this is the only lifestyle difference. There can’t be another answer. There isn’t one.

I admit this to you because I’m convinced this is the case. I’m in the process of essentially becoming a guinea pig for the research into this question. Cowden’s affects 1 in 30,000 Americans every year (I do not have to hand the relevant stats for Canada but imagine there might be some difference owing in part to how many more Canadians use weed), my daughter potentially among them, so I feel a personal responsibility to do this—not because of weed, naturally, but because for an illness this rare, medical professionals need volunteer patients, people who would submit to testing, etc. The tests aren’t pretty. Needle aspiration hurts, for example. I won’t lie. Afterwards you want to crawl back into bed with your favorite stuffed animal.

But let’s say that for Cowden’s patients, weed can be proven to: 1) reduce the overall number of tumors, and 2) reduce the risk of malignancy, wouldn’t that be worth something?

I should certainly think so.

Now, cannabis has a terrible reputation as drugs go. Politicians hate it because of their close relations with tobacco, alcohol, and pharma lobbies; cops hate it because it’s “against the law” although many of them know quite well the law in this case is unenforceable; and in general, people tend to view cannabis through the lens of their own political leanings, neither knowing nor much caring about the impact that has on people who are legitimately ill and require weed for their daily health. In political parlance this, folks, is called a football. And I don’t like that one goddamned bit.

I need you to understand that Cowden’s, like so many other genetic illnesses, doesn’t openly manifest; if I had all those tumors on the outside rather than the inside I doubt anyone would question whether I was ill (fact of the matter is, Cowden’s is genetically related to the Elephant Man’s disease; not an easy factoid to admit, but there it is). For that reason, strangers might be likely to overlook what we think of as the obvious, and make their judgments accordingly.

Let’s get down to the “nut-cutting” here. Cannabis should be legal, not only for medical use but for recreational use as well. The arguments in favor simply swamp the arguments against. Tax revenue alone would be staggering. But I digress. My point here is: if you’ve ever asked yourself, “Is that man high?” the answer is Quite Likely. It isn’t the only medicine I take but I treat it and consider it as such, and to be honest I don’t care fuck what anyone else thinks. If only the marijuana lobby had wealth enough to grease the wheels in Ottawa or Washington, you’d find dispensaries in every town. Maybe someday. Until then the law sees patients as criminals, lawyers see us as cash cows, and of course politicians think they can see us coming a mile away. Well, maybe. It’s all the smoke.

But it remains an insult, not just to Cowden’s patients but everyone with medical need, that these people place their interests over ours. It isn’t a surprise, mind you me, but it remains an insult. And those people on the other side are hurting medical patients.


About johnwylam1957

I'm a poet and teacher now living in Toronto, Ontario, Canada.
This entry was posted in Notes on Living and Dealing with Illness. Bookmark the permalink.

4 Responses to John’s Secret For Dealing w/Cowden’s Syndrome

  1. Cowden’s Syndrome affects 1 in 250,000 persons….where did you get your stats on 1 in 30,000? I am SO glad the cannabis helped you! How are you feeling now?

    • johnwylam1957 says:

      I forget now where I got the original….MD here in Toronto, I think. 1 in a quarter-million would not surprise me, honestly, since I meet so few others who have CS. But cannabis absolutely does help, as few other remedies do. I am not a single-issue individual when it comes to cannabis, but it honestly reduces both the number of tumors and the likelihood of any of said tumors turning malignant. All Good Wishes!

      • I am glad you have found a remedy to help you. Do you have any other symptoms of CS? I have CS so I know of which I speak. There are many people I am coming across who have it and of course since there’s no FDA pill to help keep the tumors small you have to do what’s best for you. How/what made you decide to try cannabis, if you don’t mind me asking? Unfortunately for me, that’s not an option for me and my situation, although it might help the LDD tumors….how long ago were you diagnosed if you don’t mind me asking?

      • johnwylam1957 says:

        I was only diagnosed a couple of years ago; for a long time I thought it was something else, but as things turned out it was a matter of finding the real source. It was a little like opening a Russian nesting doll; first it was one thing, then another, but now we know for sure. I have all the major symptoms (one tumor on my face, also those small pustules that remind one this disease is related to Elephant Man’s disease, and lots of tumors in the colon until cannabis). Keep fighting!

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