Kevin continues to explain how to stay alive in a world that's pretty much trying to do the other thing to you.
This is the second installment of a two-part series, preceded by Living a Clean Life in a Dirty World
Kevin Berry is an 12-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.
Once again, this may be a very tedious post for the non-transplanted. Transplantees? Transplantites? Sorry for the digression, I sometimes feel life is shouting "squirrel!" at me 24/7. Anyway, today’s post goes over some of the rules I live under, and the coping techniques we’ve devised, to allow a pretty normal life in a world where food, instead of being a wholesome, nourishing boon, is pretty much trying to kill me.
Once again, those with germ phobias or a mistrust of our first world food supply need to stop now, unless you’re one of us. If you are, you maybe know all this, but hey, I get to put up 800 words whenever I want, so here I go. Darn, I did it again.
One of the chief enemies of the immune suppressed are infections. About once a month, I’m regaled, by well-meaning people (who really should know better) with horror stories about how totally minor infections killed someone months or years after their transplant. Minor colds, ingrown toenails, shaving cuts. These are all true stories, but seem like isolated incidents. One of the scariest, which is actually a very credible threat, is that of foodborne pathogens, AKA germs. What is a bad night in the bathroom for a healthy person could be a long trip, or at least a day visit to The Guy With The Scythe.
The dietary rules for transplant patients seem draconian ... at best. It turns out they can be incorporated into daily life without being quite as bad as it seems. These rules aren’t really any worse than being a vegetarian or vegan or eating kosher or halal.
Finally, the rules. No raw fruits or vegetables that I didn’t wash myself. Even a banana, or products that say "pre-washed for your convenience” get washed for two minutes under running water or in vinegar water. At home, this is just a good idea for anyone, but in restaurants it’s a huge problem. No salad bars. No onions on a burger unless you know they’ve been cooked first. Pickles and similar are fine — by definition germs can’t live there. No stir fry or tender crisp unless it’s cooked "enough.” No garnishes. That’s right, no parsley, sprinkled or sprig. If it touched my food, that portion is dead to me. No cilantro on a taco or chili. Between no lettuce, no cilantro and no onions, my favorite restaurant near Moffitt in Tampa (Taco Bus
) has 90 percent of the menu eliminated. Servers in restaurants get very specific questions and orders regarding garnish, sides, and cooking techniques.
Oh, yeah, let’s talk condiments. If it sits on the table, or the public has access to it, it's taboo. Salt and pepper shakers on the table. Nope. Ever watched a kid stick the top of the shaker in their mouth? See someone drag it on their food? Ditto ketchup, BBQ sauce and hot sauce. At Taco Bus, no salsa from containers left on the table. Nothing from condiment pumps. I live on packets. In my backpack (it is NOT a purse, even though it has my sunglasses, wallet, keys, pens and spare change in it. It is not a murse, a man bag, or anything else. It is a back pack) ... I have an amazing collection of packets: salt, ketchup, lemon juice, BBQ sauce, salsa and pretty much anything else you can imagine. We assume, with some trepidation, that condiments behind the counter are safe, trusting the establishment and health department on that one.
No live bacteria. No unpasteurized anything eaten raw. Some yogurt, many cheeses can be eaten. Stinky cheese no, packaged fully cured cheese yes. Raw milk, no.
That brings me to the hardest one for me: deli meats and cheeses. If it’s behind a counter, and they’ve opened it and put it back, it’s a big no go. Sandwich places are out except for cooked food like meatballs. Also, if you can get a place that toasts your sandwich first, like Subway, you can make this work. But only pre-packaged meats and cheeses, and then it’s only good for a day or two.
Another no-no is ice from anywhere we didn’t make ourselves; and anything from a public drink dispenser. That means no soda or even water from restaurants. Ice machines are notoriously dirty and self-service soda machines fall into the category of table condiments ... used drink cups touching levers, spout, etc.
Of course, we love to eat out. So here’s what a trip looks like for us immune deficient types. First, bring a canned or bottled drink in your non-purse. Remember, it’s a backpack. Men have been carrying them for centuries, and they are very … hey, is that a squirrel in the window? Darn it.
Then get out an antiseptic wipe and sterilize your part of the table, the chair back and anywhere else you might touch. When asked for a drink order, you can either say "none, please” and begin the explanations, or do what I do, and order water that you don’t ever intend to touch. Order your food, making sure to specify what you can’t eat. (Another chance to tell your story). Use hand sanitizer (you handled the menu). Get out your drink, and mask the noise you make opening it. Don’t forget to wipe the can top if you didn’t do it at home!
When the food comes, check for stray contaminates like lettuce shreds, raw onion bits, or the parsley they put on anyway. Unwrap the silverware, but remember it can’t ever touch the table, even though you’ve cleaned the table. It has to stay on a napkin or your plate. Get out the packets and enjoy your meal!
Eating at home? Pretty much the same deal, except you get to use real bottles of condiments. Table sterilizing? If your kitchen table is the center of family life, like most peoples, it’s had more weird and potentially filthy things on it every day than the bottom of the shoes I mow the lawn in!
This all sounds pretty overwhelming, but it’s really no different than being a vegetarian in a steak house or kosher in a spare rib joint. You get into a rhythm and life flows on. I don’t want any of this to sound like complaining. I appreciate the chance to not eat things, wipe things and carry around a hot can of soda. These restrictions may ease, but I’ll still have to be careful for a long time. A very, very, very long time!
I just realized this series is going to need a third part. I’ve still got a collection of random and miscellaneous things to share about the wonderful life that is still mine to live.
Besides the other wonderful blogs on Cure Today’s site, I hope you'll visit my Taking Vienna site. I also recommend a T.J. and Jen Sharpe’s blog, Patient #1. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource. I also encourage readers to visit the Be The Match site to learn about registering as a potential stem cell donor.