Sometimes you die in little pieces

I had dental surgery today. So I am up late tonight because once again the Dr. decided she absolutely had to give me steroids. I hate steroids. And she was as heavy handed with the local anesthesia. It was like a plot from a bad Clint Eastwood movie plot with the numbness. My jaw was out of touch for 15 hours. Just now back now and almost normal. It is late, and I am up because of the steroids. It's nearly 2 am. Damned steroids. They ruined me in chemotherapy and now, they ruin me again. Luckily if I need I have 2 leftover Oxycontin. One is all I need for tomorrow. Take it at 8 am, stay up till 10:30 pm. Then sleep like a child until early Saturday, in this case 7 am Saturday.

The obvious speculation is the infection that was associated with this tooth came from the cancer. I am not concerned about that. I am concerned that this is the second molar from that area and now I have to get two implants to fill where those teeth were. All that goes with the theory that now that I am fixing this old car I might as well do the the expensive stuff too. I guess the trick is figuring out what has to be the predecessor to what. My insurance spent about $300,000 on me. My wife spent her life, everyday, for the last 18 or so months investing in my health. I spent a whole bunch of self absorbed hours during that time as well. My teeth they are a problem, the two molars on my lower left have now been pulled. I either do something about it now or face losing more teeth in a cascading effect. So, $5k for a couple of tooth implants ain't gonna change the world. It just adds to the wealth put into my mouth and body. Fights, old age, and stupid dentists have reduced my teeth to only a few real teeth in my mouth (32-x=?. I wanted to keep them all, but reality is life, life is reality.

This weekend I am going fishing, chain sawing, cooking and drinking like a kid for a few days. Then I will come back and 3 days later leave on a trip where there will be explosions, guns, drinking, gambling, great food; and all this in the depths of remote Oklahoma. I could become macho, I think maybe; with luck, and being real careful to listen for banjo music. Until then and much more time after, most people will think of me as they will, with actually not whit of care on my part. You don't get this old and not feel like you earned something. At least not getting old the way I did:

Me * (1 war + College(s) - 2 (divorces) - 3 (cancers) + Hope) = My life So Far

Makes you look at life a little different. I'm looking forward to the birthday I wasn't supposed to have. I'll be 61. And next year, on 3/17/2011 I am going to send every one of those doctors that treated me a happy cancer card. "Two years, and I'm not dead yet. I had to search for good doctors sometimes"

Urology has news

Went to Urology at the hospital. The hardest part was finding it because the hospital is this sprawling complex with buildings everywhere. But we got there and my paperwork was in order so I got to see the doctor.

He said a lot of things, mostly talked to me like I was some moth breather. The essence of it is that I have a mass on my left kidney. They aren't even going to test to see if it is cancer because 65% of the time it is and the test is notorious for false positives. It is a very small mass, we caught it very very early. So, the process going forward is he wants to wait until I have fully recovered from my last surgery in February so I am tentatively scheduled for a procedure in February 2011. They will go in through a small incision and put 150 degree Celsius probe on the mass and cook it to death. It is an out patient procedure, go in, have it done, go home and watch Oprah.

Now, mind you my thinking was along the line of they are going to whack the entire kidney. To have such a minor surgery is just great. That makes the third cancer I have been diagnosed with. Maybe the fourth, depends on how and what is counted. I had squamous cell carcinoma cut off my arm, the pancreas cancer with maybe the metastasizing Liver cancer and now this. It's been a mess. But we have a plan and I can relax some now.

Life can be very interesting sometimes.

Hello, is thing on?

Not just checking to see if anybody is out there. I was cancer free. Two, maybe three weeks ago I found out that my oncologist suspects that I have kidney cancer. Fucking kidney cancer. This is not the pancreatic cancer I dealt with before. It is a new threat. But, not to worry he says, kidney cancer is very slow growing, he is more worried about the pancreatic cancer coming back. Great, sharks or gators, one or the other is gonna get me.

I go in for a meet with urology at UT Southwest on the 23rd of this month. I'm twisted, worried, confused, and pretty much pissed off and all sorts of other emotions. How the fuck does a guy deal with this stuff? Not like normal people I'll bet. Most people get to deal one or two things, the IRS, maybe an ex-wife, or something petty. Me,I get to deal with serial cancer. Fuck. Lucky me.

To be continued...

Moving On In Life

I have completed the part of my life that inspired this blog. I am now what is termed a Whipplet, someone who has undergone the Whipple procedure. My life is now concerned with living the recovery from that operation. No small feat, no small challenge at all. Going forward my writing will be posted to another site, http://hagemanfoundation.org/

The main interest of the site is about Multiple Endocrine Neoplasia, the tie in is that the patient ends up with a Whipple procedure being done as part of their recovery. That is where my writing is of interest to the site. I am recovering from the Whipple and I will write of my experiences there just as I did of my pancreatic cancer experience here. My writing and the site are concerned with spreading knowledge of the Whipple procedure, recovery from it, and how to cope day to day to people who need that information.

I will be up in a day or so over there. Please, come over and read about my experiences in my blog there. Same writing style, same guy, just a different part of my life.

Getting ready for my getaway

I am getting ready to check out of the hospital. I have called Nutri-Nazi to bring me a change of clothes and to bring the getaway car around front. The nurse took the IV out of my power port and is doing all the final steps to get me out of here. This is a delicate point. One false move on my part and I get slammed back in bed, needles shoved every whichaway into me and I get stuck with three or more additional days confinement in the hospital. That happened to me in New York. I was literally dressed and discharged and the hospital surgeon examined my wound and stitches and called Dr. Chabot and all of a sudden I was being prepped for surgery. The infection had eaten away some of the internal stitches. They went back in and undid all the stitches and scraped back to fresh bleeding tissues and sewed me back up with figures of eight stitches. At least that is what they wrote in their report. The next day I felt like I had been drugged and made to play four quarters of NFL football on offense and defense with no pads or helmet. It went bad from there. So now I get a little nervous at checkout time. I make sure all the paperwork is done correctly, the nurses are properly paid off and all contingencies are covered. When they ain't looking, I'll make my moves.

I thought about it all and noticed this irony of timing. Here it is almost Easter, the time of nature's rebirth, the time for telling of the Biblical story of Jesus rising from the dead and all. The parallel to my situation is not lost on me. I was 'dead' for a year and this season of Easter I am reborn with a new life. I am not Jesus Christ, and I am not a strange, kinky rabbit that lays chocolate eggs. I am just a guy who has made a life of being one tough stubborn SOB and I am born all over again this week so I am Celebrating Life Again.

How I spent three weeks in New York with no money and no clothes

I am out of New York. We flew home March 17. I got home and went to bed and slept for 18 hours. I still had the post op infection. What I didn't have was a plan to get admitted to the hospital for follow on care. Finally on Friday I met with my primary care physician who set it up for Monday. I was to meet with another surgeon, the one who placed my power port last year. Got a plan.

Had a plan. Sunday the plan changed because the surgical incision got all full of pus. That is medically not good. Another day, another hospital. So I got admitted while they treat the infection. This hosptial is nice. Brand new, very efficient, way closer to home. The food is served by 'room service'. And it is excellent. I have a private room on the oncology floor which is the top floor. Yesterday I felt great, today I feel great. Today I am down to very little infection really visible, but they stuffed a bunch of absorbent gauze into the wound in hopes of drawing all the infection out or getting rid of it with the antibiotics. I'll probably go home tomorrow with a visiting nurse, antibiotics and great hopes of being done with all this soon.

Meanwhile I am in a sort of spa with a great view, nice accommodations, a room service menu to die for and feeling great. Nutri-Nazi stops by on her way to and from work and has breakfast and dinner with me for $10 a meal. So nice to be back in Texas, even if I am confined to a comfy room with a soft bed and great care. I'm just happy to be alive and have a future.

Still in New York

Still reeling from the operation(s). I have lost another 20 pounds so I am a skinny 195 or so, with lose skin hanging from every fold. My appetite is good and I can finally enjoy some New York take out.

Nutri-Nazi and I took the subway over for an appointment with my doctor. It was grueling for me. I am very weak and I was spent by the time we got back. I felt like I was a bag of bones traveling on a roller coaster. My spine rubbed against the hard seat of the subway. I was too weak to sit up straight but when I did I felt much better. I had to lay down for a couple of hours when I got back, and take a pain killer. Doctor says the weakness will last for several weeks. I will endure that for the benefit of having a life to share with Nutri-Nazi going forward. Unitl this trip I was a terminal cancer patient. Not any more.

Good night for now. Off to bed at a very very slow pace. And please read the intro at the top of the page. Spread the URL around. If it saves one life beside mine it will be more than worth your effort.

New York New york!

Today I am in Hope Lodge, a wonderful place where cancer patients and caregivers can stay while they deal with the issues of their treatment far from home. It is run by the American Cancer Society. If any of my readers feel generaous, this is a good cause to donate to. This Hope Lodge has made a very significant different in my care and treatment.

Now, on to what my readers want to know. I am out of the hospital with a prognosis of no more cancer, no more treatments, no chemo, no radiation. They were able to remove all of the cancer and no follow up is necessary. From terminal cancer patient for 11 months to cancer survivor with no further treatment necessary in one operation. Actually one major and one minor operation, but who is quibblling? Death left me note a few days ago, he was disappointed when he left.

The hospital stay and what went on there will be described later on when I feel better and can type for a very long time. Just let it go at I learned and experienced an incredible amount while in the hiospital. I was in there for 10 days. An experience I would wish only on the most interpid explorer.

For you gory or mobid people out there I have a 14 inch scar forming across my chest just below my rib cage. They had to leave the incision open because of a minor infection that required removing all the staples and letting the wound slowly close on its own. It is quite the experience to see yourself laid open like that.

I expect I will be closing this blog in a while as the story has pretty much ended. I will be adding details about the end of my saga as my strength improves. I have quite a story about my hospital stay to add before I close this self indulgent story out.

For right now, just know that even when there is no hope left, event the best can still happen. I will return to Texas next week a new man, cancer free and looking to live a better life.

Off to New York

Today I leave for New York. I cannot think of any time in my life that I have been more uneasy. Tomorrow I check in to the hospital for a seven hour operation. After that I will be sedated for another day or two in the Intensive Care Unit. Once I am stable I will be moved to a semi-private room for a few more days. After that I will be in a 'hotel' run by the American Cancer Society for about 10 days. That confirmation came Friday at 5 PM. So all the details are worked out now.

What is not worked out is the uneasy feeling I have about all this. On the one hand, the cancer is terminal. On the other hand the operation or follow on complications can kill me too. The advantage I have is that this surgical team is very familiar with the procedures because they do it often. Then there is the truth I learned when I studied all my risks with pancreatic cancer - statistics don't mean anything until you are one. So, even with a low statistical percentage of patient mortality, there still is one. So I look at this as very much unexplored territory, it is my trip through the risks of a lengthy surgery and recovery. I wonder if I will ever be 'the same'. Certainly I am already changed forever by the cancer, just how this surgery will change that situation I am not sure.

I will be gone for three weeks starting today. I have left instructions for my wife to post here if she can to keep everyone informed. I will not be able to post until I return. My access to this account and most of my other means of communications will cease today as I am not allowed a computer in the hospital and I am not sure about the Cancer Society lodge whether it even has internet access. I will probably have to rely on word of mouth via telephone contacts to get the word on my condition out.

So, there it is. I am absolutely up against a wall, the next few weeks will have a major impact on my life. I have to turn off as much emotion as I can and just weather this episode. Good luck to all of you. See you in three weeks.

Administrivia, what needs to be done needs to be done again

The final detail I thought had been nailed down proved to be not so quite nailed down. It goes like that. The lodging at Hope Lodge was actually not complete. It is purportedly done now. More hell raising on the part of Nutri-Nazi. At some point here I am going to just get tired of it all and then all hell is going to break loose. But for now, I am going to hold back my tendency to go for results the hard way. You'd think after this last year I would mellow out. Nope, there are only so many miracles in any crisis.

Tonight is Steely Dan and my time in my cave. Famous Grouse scotch in small doses. The snow outside is beautiful. It was Siberia this morning. We have the most polite snow here. It shows up for long enough to be beautiful and entertaining and before it wears old it is gone. Perfect weekend guest.

Maybe in a while I'll go light a fire and entertain my long suffering wife. Or entertain the fire and .....

More logistics minutae arranged

I finally heard from the social worker today that can get me into the cancer convalescence residence. It is called Hope's Door, in New York City. It is run by the American Cancer Society. It will be my home for about 8 to 10 days while they monitor me in case I spring a leak or in case any other unexpected things happen. That is a great relief.

I have promised myself that I will procure for them some items for their patients. They have a wish list of things and ten irons is on there. I will now spend some of my ample free time trying to find quality stuff at low prices and get it all shipped to them. Shouldn't be too tough, I have already set it pretty much in place.

Our airfares to New York are a horrible mess but I finally just got actual tickets to fly out on February 21. That leaves some money tied up in standby tickets but we can deal with that. Janice is also working another angle but the snowstorms across the country have made getting people on the phone kind of iffy.

Having actual tickets and reservations also makes it possible for me to attend the annual camp out in the rain, the mud and the beer that is celebrating approximately its twentieth anniversary this year. No one really knows when it started because these guys are all fifty years plus and they have a poor memory, blotted to some extent by beer, time and other major events in their lives. So we will call this 20 and celebrate in the familiar fashion. We expect it will be raining, we expect it will be cold and muddy, and we expect they will all drink more beer or alcohol than is humanly possible. I will remain sober as the surgery will be four days later and I can't afford any detriment to my health. The highlight of the camp out is the Saturday night fire that consumes an impressive amount of wood and produces some wonder among the uninitiated and even among some veterans. The fire ring is expected to once again glow cherry read for most of the night, and we will be melting beer bottles in the fire. Inside every man is a young boy struggling through life. This camp out lets that little boy in all of us run rampant for a day or two. Sunday morning we will all return to society relaxed and recharged, our inner little boy securely tucked away for another year.

After the first rush of the good news

It has been several days since I got home. Every night I have been out with friends. I am amazed how many people have rallied to my corner. It is something that amazes me on a level I never imagined. I see plainly that my life up to now has been spent not counting on people and maybe that is where I missed so much of life. I can't really describe where it was that I withdrew from the world, at what point it was that I turned off the contact. But in the last few days I have seen something that makes me really want to live. I have friends who really care and I need to honor that. It will be the first step in earning my new life.

To that end, I met a friend of a friend who has a motorcycle but he has never really taken it on the road. Today I proposed a couple of trips that will be longer than anything he has done before. Maybe I can help him get some miles on his bike and really enjoy the road. And the places I picked are places that I would like to go to anyway. I also talked with another friend about this camping trip coming up. Just before my surgery is the annual camping trip (been going on for 20 years, I have been with it for five) and I need to arrange so I can go. A friend suggested we go early and do some shooting on the property of one of the other guys then head to the camping spot. Doing that gives me time at the camp out and some time for talking and just being outdoors. If you like being in a near constant drizzle and cold while drinking beer. I still have to negotiate with Nutri-Nazi as she wants to fly out that Sunday. She has no real feelings for the camp out and would sacrifice the weekend easily to be in New York early. This is going to be some real negotiations.

Nutri-Nazi, ever the poser of popular philosophical dilemmas has asked me what I am going to do to make this new found life worthy of living. I find the question somewhat passe as I have already determined that I have several things to do that will very much justify my new lease on life. I kind of resent having to 'justify' my new life. All I want to do is explore life with a little more enthusiasm and avoid the unhappiness that brought the cancer and the last year of drama. I will start with recognizing and encouraging more sincere contact with my friends. From there I am sure other things will present themselves without my having to put together a schedule and process plan.

It has been only a few days since the operation has been scheduled. I feel like a ten year old. A massive and threatening weight has been lifted from my shoulders and the promises are still taking shape. They will slowly coalesce as the days go on. I have ordered some books to pursue a few hobby interests. I have finally been able to focus enough to actually make progress on resuming a programming career. Amazing the clarity you have when you the 80% of your mental faculties back that used to be completely involved in cancer related stress. So many changes coming now, it will take days and weeks to develop them.

Seems strange to sit here in silence and not have my heart pounding so hard and my ears ringing from high blood pressure induced tinnitus. I hear silence for the first time in a year. Its the little things that you notice sometimes.

I say to any one who reads this. Put your coat on, go outside and look around and imagine that this is the first time you ever opened your eyes and really looked. It might just be a little change in your life. Because out here in Texas, that is where I am headed and I expect to see a world full of promise, just like a ten year old would. I am reminded of something I said many years ago. Age is relative to how old you feel, and I am feeling very young today.

Back to Texas

My consult in New York went well. I met with the head of the surgical team and several members of the staff. We discussed just about all the angles and they determined that given all the conditions and complications that they can do the surgery.

The complications are that the cancer has invaded the superior mesenteric vein. This vein takes blood from my intestines back to the heart. My body has utilized other paths around the blockage but to complete the surgery they will have to enhance the blood flow in that area by reconstructing the vein. They cannot properly analyze that situation until they go in. The best pictures they have are CT scans and MRIs and they are only so good. They will remove the head of the pancreas and my gall bladder as well as the bile duct stent that was placed last March. I won't miss the stent, the gall bladder I would rather keep, but if it has to go, so be it.

I will be hospitalized for ten days or so, or until they get tired of me, whichever comes first. Then there will be ten days or so of convalescence somewhere in New York City before I am released. Such a pity, all those great restaurants and I'll be on a restricted diet. I am still trying to arrange where the convalescence will be so there are still some logistics to settle.

Also, since the time is extended, Nutri-Nazi and I have to wrangle out the time(s) she will be with me. She will likely come up for the surgery, return and then come up again when I transition from hospital to convalescence. The coordinator and the surgical team both went over the menu for when I am out of surgery. I had to tell them that Nutri-Nazi, true to form, already has it posted on the refrigerator. She is already scheming to control my diet. The woman is absolutely ruthless on diets and controlling food consumption. Hence the name Nutri-Nazi.

All in all, this is the first day in nearly a year I have not felt death standing right here, looking at his watch and tapping his foot impatiently. Kinda miss him. He was fun to play poker with (great poker face), lousy at small talk, but he did have some funny stories. You have to appreciate dark humor though.

Tomorrow is another day...

Tomorrow I embark on my journey to New York to discuss my ultimate fate with a man I have never met. I know only his name but he holds my life in his opinion. I have sent him all the tests and reports that are pertinent to my condition. Wednesday he will likely render an opinion, the outcome of which will be life changing to me.

I can only think of one other time when such a trip was so momentous, the day I left for Vietnam. The feelings are much the same for much the same reasons. Life and death hangs in the balance. The difference being that when I left for Vietnam I hadn't faced death or battle yet. I have now been in trench warfare with rounds going over my head for nearly eleven months, I just can't shoot back. Even though I faced death every day of all those eleven months. When this first started I woke from every sleep with one thought, always the same thought, "I am going to die". Now that is all in the past, I just wake up and try to make every day normal. Not so easy when you feel like crap from chemo or whatever medicine you just started or finished. Some days are better than others.

I sent the disk from the last CT and the radiologist's report to New York so it wouldn't get lost or misplaced, or worse yet forgotten in the rush to get out the door. I have the deepest fear of traveling I have ever experienced. I feel vulnerable like I have never before experienced. This is a very difficult time for me. I just need to treat this like any ordinary business trip. If only I could.

In a few days, in a few days I will know more. I will post when I can. The rest of this week and next are all up in the air. Surgery is scheduled for next week, if I am considered fit and otherwise qualified. But it is all subject to change.

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.