Things are right on schedule

Following in the pattern established in my first round of chemo, tomorrow is my first infusion of the second cycle and my hair is starting to fall out. I will be bald within two weeks. What a thing to have knowledge of. I expect that the chemo brain portion will also kick in in a week or so. That is when I get absent minded, my mind stays in a permanent fog as dense as anything in San Francisco. Not something I am looking forward to.

New York hasn't called yet. I called them today and was reminded of what I don't like about New York. If you can't say it in ten seconds or less they lose patience with you and courtesy is a luxury they seldom chose to afford. Anyway, I know the radiologist's report is on the desk of the head of the team. Now to wait for the analysis at that end.

Tomorrow we are expecting the annual blast of three days of winter to arrive. Snow mixed with rain. The whole recipe is rain and sleet, with ice forming at every inconvenient place like bridges and shady places, just add people who have absolutely no clue how to drive on roads that are flat straight and dry and you have every reason to stay off the roads, at home and inside. I have to go to a doctor's appointment tomorrow, probably before the storm hits, and then chemo Wednesday. That's just about three miles away on a very safe street, no bridges to speak of and it's a reasonably straight shot. But stand by for footage on the national news of cars doing the pirouettes and point to point contact so famous from this area when it ices over. Just hope I am not one of them.

Stay warm America. The new year is in the offing and with it apparently a new set of nasties to vex us. I intend to be here for all of the new year, bald and all.

Merry Christmas

I read something just now that makes me realize how wonderful life can be. "In our youth, we were ungraceful and arrogant; funny how hardships teach you gratitude. We have acquired a greater awareness of blessings; not just the big blessings, but the small ones". I have acquired a sense of thanks and of wonder these days. I am still alive and with the grace of God I will be alive for more Christmases.

I await word from New York. I sent them the radiologist's report from the MRI but it arrived after they closed for the holiday. You might say there is some trepidation in the waiting.

From 'expired' to 'retired'

The news from New york is that the surgical team wants to see more of me. More specifically they want to see an MRI of the area where there was a cancer on my liver. This is quite some task as I now have to get one medical group to cooperate and perform a very expensive test at the request of another. This is the heart of the beast when it comes to medical expense. Apparently though I have two very select groups working for me.

Once I gave phone numbers for New York to my local people things happened and they found a slot for me this coming Monday to have the MRI done. Then I simply request that the imaging group produce a CD and I overnight that to New York. Then New York will look at it and make more medical decisions at what will seem like the speed of geologic time passing.

You may notice I sound a little cynical about medical teams. I am. I have been banged up, beat up, damaged and often in need of medical help many times for simple things like broken bones or repair of gushing wounds. One thing that seldom happens is a medical team making decisions in a hurry. There also seemed to be an unspoken creed among medical teams that they never hurry and they never let the patient feel like he was part of the whole episode. Well, the people working on my case are breaking that whole perception down. From the time I was first suspected of being in deep trouble, every medical team member had made me feel like I mattered. This is different and I am not accustomed to it. The team in New York is human and makes me feel comfortable. The local team is friendly and efficient. give me some time to drop my defenses here and accept that these people really care about me as a human being. It is a rather new and welcome sensation.

So I go into the weekend feeling better about the people who are handling my case. They are doing one hell of a job. I feel am going I am going to make the transition from ready to expire to simply being retired. The I have to work on that situation because I don't want to retire just yet, I still have something to contribute.

And this just in from New York...

Sarah just called from New York. I am a candidate for the resection of the pancreas. What was once an inoperable cancer is now operable.

I have an outstanding chance of living a normal life from here.

Details to trickle out at an an unimaginably slow pace starting Thursday.

From .01% to near 100% chance of living. Things change.

And now the quiet of waiting

I submitted the various records necessary for evaluation to Columbia University and I await their conclusions. It is very difficult to wait for their response. Obviously to me the matter is of utmost importance. And apparently it is to Sarah at Columbia as well. She has just sent me an email saying that she has received the package and will review it. She says they will try to get back to me tomorrow. The hardest part of any process is the waiting.

I am having trouble with my attitude these days. The chemo is weakening me more every day. I sleep later each day and have less energy. Yesterday took a very large toll on my energy, all the excitement of having a possibility of surgery left me shaking and distracted all day. I had dinner with friends and was even home fairly early last night. But today I am exhausted. I slept until nearly noon. I weighed myself and of course I had lost more weight. I find that concentration is beyond me. I have very little energy. Making something to eat is a serious challenge. I finally managed to make a sandwich and another protein drink. That helped some but still I feel like I am just wandering through life. Tomorrow I have my next chemo infusion and that will sap me of more strength.

I am supposed to drive out to see some friends for a camping trip tomorrow after the chemo. Right now that is looking very tentative. I should start packing for it today so I can get going when the time comes. Such an endeavor just looks so far away today. And I wonder whether it is really my energy level or my attitude that is the problem. I am losing at least a pound, sometimes two, a day nowadays. (I changed out my Levi's from 36 inch waist to 34 waist, and they are baggy already.) That must have something to do with not getting any nutrition out of my food. But I have no real method of telling just how true that might be. I know my concentration is nil, I can barely type a few words without having to go back and correct my spelling. I can barely read an article on the internet without losing my focus. Not long ago I would study a particular point for hours, reading every link I found until I understood the situation fairly well. Today I can hardly finish any one article. Part of it may be just being cooped up here in the house and not getting out. It is nearly 2 pm and I am still in my pajamas. A regular fireball of activity I am.

I'll post more when I hear back from Columbia.

Just when things looked kinda grim

Tuesday was another day of being sick from the mung and losing two more very precious pounds. I was pretty much in the darkest of moods all day. It was cold and wet and there was just nothing to cheer me up. I had a little email tiff with Nutri-Nazi over my lunch. I wrote that I wanted to get out and have a meal that I didn't fix, something that wasn't just a sandwich or leftovers. She said I should have a protein drink, at home. I rewrote the email back to her a dozen times before I got it toned down enough to send. Finally I just left and drove around for a while before going to a local pub for a sliced prime rib sandwich with a salad. Getting out did wonders and having a fabulous sandwich served to me just made my day. I came home and eventually did have the protein drink, but only after getting out and seeing that the world was still out there.

This morning I had a thought back to a week or so ago when I found out that without surgery I had little to no chance for survival. I remembered that during my search for mortality figures on pancreatic cancer patients I had come across a site that promised a surgical breakthrough that could operate on cases like mine. To be particular, the pancreas has a series of blood vessels that pass through it. They are like major veins and arteries taking the enzymes and secretions from the pancreas to the organs and the rest of my body. And they bring in the chemicals that signal what the conditions in the rest of the body are to the pancreas. In the midst of that tangle of delicate blood vessels is where my cancer sits. That location rendered my cancer off limits for surgery. But this site promised they had the skills and experience necessary to successfully.

I went back to that site this morning. It was the Columbia School of Medicine in New York City. That is the place where the Whipple procedure for pancreatic cancer was developed. I called them. They asked for my records. I sent an overnight package of the CDs of the CTs and emailed them the original report of my biopsy. They will go over all that and will consider my case for the surgery. I don't know when they will get back to me but a very nice lady named Sarah is right now on my list of favorite people. I can only keep my fingers crossed now. They are my hope for a long life right now.

The Lab Rat in Training may be headed for the Big Apple.

Monday was a down day

I felt miserable. It was a combination of cold and/or allergies and the cancer. The day was cold and miserable, the kind of day that takes away your morale as well as your body heat. I had a doctor's appointment to secure some more insulin. I got up to get ready at 10:30. I had slept late because I felt so lousy to begin with. I weighed myself and I had lost 2 more precious pounds. I got to the doctor's office and visited with him. He prescribed more 70/30 long and short term insulin. Novolin this time. I went to get the prescription filled and the time dragged like waiting for hell to open up and swallow me. It took a full hour, maybe a little more to get the single prescription filled. Before me was a line of people, all of them getting cold and allergy prescriptions filled. You get to know the look of codeine cough medicine being dispensed and listen to the conversations of people discussing their symptoms and you find out how pervasive the mung is among the population.

I had the mung but that was the least of my worries. I felt miserable and just wanted to get home and back to bed. Losing the weight was a major blow. The doctor said it was because of the insulin imbalance. If we can get the blood sugars down the weight would stabilize. I had a screaming headache and a sense of deep detachment from the people around me. I was tired and beat and all I wanted was to get out and come home.

I thought a lot of very dark thoughts during the time I waited. They were all about death and what was very likely waiting for me in the next few months. My mind played deadly serious games with me, like wondering what it was that I was going to miss out when I passed. How much of the 'future' was I going to miss, and that I had no need for new clothes or more tools or much of anything else as my condition was not going to allow me to utilize any of them. I speculated on how long I had left. The weight was the primary indicator.

Pancreatic cancer starves the body. Body weight becomes a primary resource. The more weight you lose the less time you have left. I have now lost 11 or so pounds in about three weeks. The chemo has got to kick in soon and counter act the effects of the cancer. I am hoping the Novolin will stabilize the insulin/sugar equation. I wondered if I would be able to eat enough to put weight on and keep it.

This is no simple question. My body does not benefit fully from the food I eat. I would guess I get about 40 to 60 percent of the nutrition out of every meal I consume. The rest simply passes through. Right now I could eat for two and get the benefit for one, but I will spend half my day in the bathroom as a result. I have been doing that for better than a year now and it wears a guy down. I had some good days during late summer, but they are behind me now. I can only count on the chemo and the insulin to help me through these days. And eating everything that comes my way.

I am awake early this morning because I had to get up to go to the bathroom. Getting rid of excess sugars in my blood the old fashioned way. And the melancholy has not left me. I peruse the Internet and I read what purports to pass for news. I look at what is happening in the world and I am not encouraged. We have computers and instantaneous messaging and global reach for data and information, yet stupidity and ignorance are the only things gaining in popularity. Near as I can tell only ignorance can exist in a vacuum and it seems to prosper these days. People seem to read more and more only to confirm their biased points of view. On the plus side I will likely not see the outcome of the current political effort. For that I am somewhat soothed. I can say without fear of contradiction that as a whole our politicians have gotten dumber by the day over the last several years, and their constituents even worse. The more important the politician the more absurd his perspective is. I am waiting for the pictures of the witch, the duck and the scales to hit the front page of the major newspapers across the land. You can tell I am in a fit right now. I feel alone, isolated and completely abandoned by the world. My poor health makes me very self centered and my deteriorating condition separates me even further.

Let's give the Novolin a few days, and another infusion a chance to work. Maybe this weight loss will stop and maybe, just maybe I can make up some lost ground. I'm going back to bed. I will dream of scrumptious meals and exotic treats to get my hunger up. I have to eat like there is no tomorrow, for surely if I don't there won't be.

First infusion of new round of chemo report

I am fine. No nausea, no ill effects. Surfed the web during the infusion. I came home, sent some emails. Slept for an hour or two. Up and doing fine. Cleaned the kitchen and made dinner. Watched the latest Transformers movie out on DVD. I am just hoping I can sleep tonight. I fear the steroids from preps may have wired me for sound. I don't want to be up all night.

We'll see how it goes from here. Life is full of surprises.

Bits and pieces of info

Yesterday my oncologist let slip one bit of information that really sunk in. He said there have been no cases where pancreatic patients have recovered without surgery to remove the cancer. That is important to me because I have inoperable pancreatic cancer. You might be able to see how career limiting the meaning of that information could be to me. I pondered that information for a while. Then I started researching the claim. Seems that for the most part it is true.

Very few pancreatic cancer patients survive six months after diagnosis. I have survived nearly 9 months now and put on 25 pounds while doing it. Most of the data that supported those claims were a few years old. I called the National Cancer Institute and asked them a few questions to get recent data. First, what are the survival rates for pancreatic cancer patients with inoperable cancer? The answer is a very low number, less than 3% over five years. Next, what kills pancreatic cancer patients? Mostly the behavior of the pancreas, it either stops producing enough digestive enzymes and the patient starves to death, or the pancreas swells and blocks the digestive track and the patient starves to death. Or the cancer metastasizes to another site and takes over that organ it fails and that finishes the patient off. Most of the good news they had to share involved the administration of gemcitabine, Gemzar is the label name. I am on the Gemzar, Taxotere, Xaloda (GTX) chemotherapy regimen. Apparently I got the Cadillac regimen right out of the chute. Lucky me.

So here is where I start the possibly self delusional stuff. I put on weight while in chemo, the cancer has shrunk to half the original size and is currently stable. The metastasized cancer on my liver is gone. None of that seems to be going in the direction necessary to set any of the criteria in place for my passing. But there is a chance the cancer can build immunity to the chemo, but that is yet to be ascertained in the general case. So, for now I am properly deluded and I feel better. Also this morning my blood sugars were 135, as compared to over 400 the other day. Thank you Primary Care Physician man for the Novolog, it is working marvelously. Now I get to sleep in late, (slept till 11:30 today) claiming I am on chemo and need all the restorative sleep I can get.

For now I am feeling better about my health, such as it is. I have no idea where I will be in six months. My bet is bald again, fat still, more lazy and whining in my blog about how the chemo is making my life miserable. There is no cure for totally neurotic behavior after all.

And this just in.....

Today I resumed chemotherapy. I began the Xaloda today and will have my first infusion Friday morning. I just came from a meeting with my oncologist. He agreed that given the suddenly rising blood sugars, the weight loss and a few other weird symptoms I have noticed, it all adds up to resuming chemo.

I take Xaloda by mouth and I will get the Taxotere and the Gemzar through an infusion Friday morning. I will see three cycles of 2 weeks of chemo then a week off, this is a cycle, three cyles make a set and then I will go through another set before we re-sample. This time however I may go a third set before a holiday. This time it is for all the marbles; I will keep going until either the cancer is gone or I simply cannot take any more chemo. Then I will take only enough time to get my strength back and then start chemo again.

I call the time I am in chemo the dark ages. I get all foggy and time and memory slips away from me. I will post as often as I can to keep people informed but there will be little to report except how lousy I feel and any weird ideas I may have about mortality.