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.

Got the call today I thought would never come

I have a consult with the Pancreas Center at Columbia School of Medicine, Presbyterian Hospital on Feb. 3. If I pass all their medical tests and am in adequate physical shape to handle the operation I will be operated on the following week.

The Nutri-Nazi called up today and stirred the hornet's nest. They called back an hour later with the appointment.

Not much more to say. Just a lot of plans to make.

Ten months and counting

Today is more or less the ten month mark of my endurance contest with pancreatic cancer. I wish I could make a celebration of it. But I can't get the juice to celebrate. It's not over, there is no cavalry riding in over the hill with bugles blaring, not respite from the drama. Just another day of feeling crappy, taking more pills and wondering what is going to happen. I don't have the usual nausea and other problems that other patients have. For that I am thankful. I do have the constant reminders of my mortality. That is enough to raise my blood pressure every time I think about it, several hundred times per day. I'm not anything special, nobody made me out out be immortal, or a celebrity. I'm just a guy whose life is now hanging by a thread because of a cancer that is almost certain to kill me. Just when remains the big question.

To look at me I would seem the perfect specimen. A nurse the other day was surprised by my age, she thought I was 20 years younger. I have a nice trim figure, some 70 or so pounds down from two years ago. A very long two years ago. My skin is nice and smooth, no belly roll, the bags under my eyes are even improving. (My doctor recommended Preparation H for the bags, to draw up the lose skin. It works, it also helped the dark circles under my eyes. Laugh if you will but somebody out there is gonna try it and like the results.) I take so many pills that I lose track of what to take when and usually screw up the intake of at least one or two a day. Today I think I screwed up my insulin and my magnesium. I really need to make a list and a schedule so I can check it off each day like a good little bureaucrat. Someday.

Well, it is after midnight and suddenly I am tired. I tried to write something else but you just read what came out. It is ten months into my ordeal and I am still ticking. A walking miracle some say. I don't know, I am just trying to make it through life the same as everybody else, I just have a few more issues than some.

Catching up

I have not posted in a week or more, and of course there are reasons. First, my dreams started getting very violent. Those dreams are the first warnings of PTSD kicking in. Yes, I have PTSD, not from 'Nam but from childhood. More precisely long term PTSD, the difference being that it took years to get that way so it permeates my life in few ways that aren't stereotypical. I don't go nuts, instead I grow very isolated, I lose my trust in those around me. I tend to draw all my feelers in and draw back from people, from everybody. And I tend to get rather dark about it all. When I get dark I don't mean to be unpleasant but everything comes out way too depressing. So when I recognize that tendency I shut up. I asked for and got some anti-depressants. First thing they do is really emphasize that attitude, that dark and dour attitude. That is really shut your mouth time. Later on the anti-depressants are supposed to reverse the effects of the PTSD. We'll see.

Second, in the middle of that funky deep melancholy I tried to get information from New York about the possibility of the procedure I need to have done. I need to add that I don't like New Yorkers, they are a foreign form of life to me. They are abrupt, arrogant and just plain harsh. So the phone interaction did not go well. The end result is I may have bugged the coordinator by calling her once and emailing her once, a week apart. She was abrupt on the phone call and did not return my email. My mood made me believe that the procedure is off. Whether that is true or not is uncertain, but that conclusion threw me into a funk as deep as you can imagine. So, I will simply let it go and see if anything ever comes of it and keep what optimism I can muster in play. Without that operation I am sunk. You cannot imagine the deep mental anguish this is all producing in my pointed little head. Not the peak of my worry bin by a long shot though.

I went in for my infusion this morning and they cut me off short. My white and red blood cell counts were low, like dangerously low, while my blood sugar was dangerously high. They sent me to the ER which read my blood sugars considerably lower and my WBC and RBC a little higher. They are very concerned about infections and me being in crowds, especially children or sick adults. One suggestion was that I wear a surgical mask all the time. But I managed to convince the cancer center team to give me the infusion. Imagine, someone begging for a chemo infusion. Not ordinary by a long shot. But I got what I wanted, even though it will further lower my WBC and RBC. They are all worried about my blood sugars too. Frankly I credit the high blood sugars to the fact that I went into a deep depression over the New York episode and literally slept the bulk of the previous 36 hours away. You don't do anything and your blood sugars will go up, not to mention some a candy bar and key lime pie and a lot of honey on my oatmeal this morning for breakfast. Yeah, I'm a mess emotionally and physically. You don't want to read the list of pills and procedures I have to do every day, every meal and so on, and added about three more in the last two days. I need to make a day long list just like the takeoff check lists for pilots. I take something like 20 or so pills at specific times during the day. And poke myself at least twice during the day. Some of the pills interact I am sure, and none of them have any fun side effects. All of the chemo chemicals cause issues, among them going bald, again. I shaved my head, again. It is cold outside, very cold, my head gets very cold. The only cool thing is that I take the hydrocodon to combat the headache the high sugar levels give me and that makes me just a little buzzed and detached from it all. That allows me to think. So, I have had a hard time emotionally and physically and it is all part of the disease and I get 'away' from it with prescription drugs. But I can't bitch really, I have it easy compared to most pancreas patients. No nausea, no pain in my gut and I have survived far longer than most. But it is not pleasant.

So I make up my list of imaginary resolutions and I lie to myself that I will actually do them and things will improve. Some of them I will actually do, some of them I will half ass do and some will just get lost in the mumbled life that is my day to day. Somewhere on that list is to defy my tendency to get all isolated from the world and get some social plans. Times with friends are really the only escape I ever get from this mess. When I am with people I can forget that I have terminal cancer that it will take a miracle and/or an operation to survive. I wish I had something uplifting to add here but I don't. It is a day to day struggle to keep my sanity and my health. I keep saying, 'just make every day as normal as possible'. Sounds simple, but the implementation is tough, every day it is tough. My one bright spot is that Sunday I can have a glass or two of red wine again. I plan to.