Lessons of being panc patient

First, DO NOT eat toast smothered in jelly and a load of honey over your oatmeal before you go in for chemo infusions. Your blood sugars will look like a sky rocket and the whole medical team will blow gaskets and send you to ER for observation and way more poking and probing than you just went through. Eventually cooler heads will prevail and they are still going to stick the noxious chemicals into your system and you will still turn a light and not very becoming shade of green.

Second. You will go through toilet paper like there is no tomorrow. Your system doesn't really get the right enzymes to break down the food you eat so it passes through, quickly and often. A little Immodium and some over the counter pancreatic enzymes help but still, you had better love the decorations in the bathroom.

Third, your sleep cycle is out the window. Forget schedule. You will be awake at 2 am and sleeping at 3 in the afternoon. If you are lucky you will get seven contiguous hours of sleep. Sometimes I sleep for ten hours and wake up more tired that if I had slept for just three. Last night I couldn't sleep until I had a bowl of cereal at 2:30 am. I woke up at 5, not wide awake but I couldn't sleep. At chemo they gave me Benadryl as prep, knocked me out for somewhere around three hours. I am just hoping I can sleep tonight.

Your will eventually be advised either through adverse experiences or through well meaning but adamant family members (Nutri-Nazi) to reconsider every thing you eat or drink. Booze is out while on chemo, and over time your craving for it diminishes. Sugar in any form is questionable. To much fat or any other potentially controversial food becomes subject of endless debate. In the end you find yourself eating more and more by yourself just for the quiet. I occasionally sneak a candy bar just to assert my independence, but that is fading. It is no fun sticking yourself several times a day and reading a blood sugar meter and then dosing yourself with a needle. Sooner or later you adopt a low profile behavior pattern that cuts down on the nagging, the sugar spikes and improves your general well being. I have a few beers and maybe wine on my weeks off of chemo but the thrill is gone in drinking. I had a scotch and water the other night and just couldn't even imagine having another. From 100 mph to 3 mph in one smooth long declination of activity.

You eventually learn the effects your disease has on those around you. They get forgetful, impatient, along with other signs of distraction. They are having their own problems with dealing with everything you are dealing with, they just have a party line to listen in and it is driving them to distraction. It takes a major special effort on your part to recognize and deal with that. But believe me, if you neglect that aspect you will lose a considerable part of your support effort. People only stick around so long before they decide they are either part of the solution and the situation or they are gone. This ain't no one man show. You have to work at building and maintaining that support and listening and asking questions and allowing some wide altitudes at times is absolutely necessary. I have learned so well how to listen even when it annoys me, pisses me off or just plain makes no sense. People need to talk and hear themselves say their words as much as they need you to hear their words. Holding your tongue is sometimes worth the longest speech you could make. This minute in eternity is going to pass and eventually emotions will subside, then the healing and reconciliation can begin.

Finally, forget having peace of mind. Forget even having too much aspect on the world around you. Ultimately you will be consumed by personal thoughts of your own health and mortality at every odd moment. Climbing out of that pit is tricky and recidivism is rampant. Right now I am chewed up by the planning for New York. The logistics are huge. An overnight trip for the consult and then 4-10 days starting the following Sunday if I get approved for the surgery. Taking care of the house, the dogs, a battle weary and half hysterical wife, and making the plans is a real challenge. And any of the schedule points can change on a phone call. Right now my consult trip looks like this: $211 for the flight (round trip, with stops both ways), $125 for i night in a hotel room, and about $100 for transport from La Guardia to the hotel, then to the hospital and then back to La Guardia, a distance of about 13 miles total. I hate New York. If it all works out I get out of the hospital and fly home to about two weeks of pain and recovery then more chemo to clean up the lingering cancer, if any. When I say pain, I have heard it compared to getting sawed in half by a chain saw. But it beats the alternative. As a bonus I may get the equivalent of lap band surgery so I will never gain weight again unless I make a very concerted effort. Conversely I am worried about not getting the operation.

Listen kiddies, don't let this happen to you. Eat your veggies and change your skivvies every single day or you could be in my position.