Diehl Martin
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The
Cancer Blog - Until Nov 30, 2006 For the current page, please see: http://diehlmartin.com/cancer.html Update Diehl Martin passed away in October 2007. If you need to contact someone, please contact Monica Martin. Nov 30, 2006 Today is a day at the office in Huntsville. I am now well enough to go in one day a week, which is a great improvement. I drive in very early, under the theory that if I can get out similarly early, I can drive home while it is still light. That helps a lot, since my energy level is not back to normal yet. This is to be expected, as for nine months I did not do much in the way of physical activity. No one expected me to live, and the combination of intense pain and nasty pain killers combined to make very little possible. Now that is over, and I can work at regaining my strength. The Lord has been so good to me! Nov 29, 2006 What an excellent day. There was work to do, there were chores to accomplish, and after that I finally got to go back to choir rehearsal. I have not been able to sing with my church choir for more than nine months, and I have been missing it. So tonight I was able to go, and that was a real treat. Monica asked me what I wanted for Christmas, and I told her that I wanted to be able to sing again. What a great day the Lord has given me! Nov 28, 2006 Yesterday was interesting. It is obvious that Dr. James Posey, my oncologist, does not really know what to do with a pancreatic cancer patient who is doing this much better. Jill, the Wonder Nurse, spoke to us for a while several times yesterday, and there was some initial thought of putting me on a clinical trial of some new therapy, but it turned out that the group was already full. So that will not happen. But there is no certainty yet as to what they will do now. Jill asked which chemo drugs I had been on, and whether they had tried treating me with multiple chemo agents simultaneously (no). There are no new appointments yet for anything, but I am sure that I will soon receive the next set of cards from Kirklin Clinic telling me my new appointment dates. We shall see. Today it is back to work. I have had a week off, and have enjoyed it immensely, but today I will be doing engineering work again. I am working from my Guntersville office today, which is so very much quieter than the one in Huntsville. Under the circumstances, with unknown medical treatments on the way, I expect to keep telecommuting for most days, and working 32 hours per week to allow the time for medical appointments. This has worked out very well, as I can get a lot of work done, and yet not have the additional load of a two-hours-per-day daily commute. The Lord continues to bless. Thanks to all who pray! Nov 27, 2006 Today we are at Kirklin Clinic in Brimingham, Alabama, for another chemotherapy infusion. Once again they take a blood sample, have me wait while it is analyzed, and then I will get my 1.8 grams of gemcitabine diluted in a fine saline solution. Such a thrill! Well, not really, but the treatments continue as they attempt to kill off any wild cancer cells running around. On the one hand I feel astoundingly better, and on the other hand I most certainly do not have a clean bill of health from the oncologist. So the treatments continue. We find out today what the next sequence will be – whether they will simply continue the chemotherapy, or whether they will decide to try something more interesting. Use of a gamma knife (that is radiation treatment) was suggested a month or so ago, but never prescribed. So we will see what happens there. The issue here is that the areas to which the cancer was spreading are all over my body. So far they have done a CT scan only on the abdominal and chest areas, assuming that everything else was unaffected, or at least not worth the trouble of looking at yet. The scan from October 30th showed things continuing to grow in unpleasant places (the peritoneal tumor was no better, and was further compressing the main vein up the back, the “sclerotic lesions” on the pelvis (that is bone cancer for those who do not know) had grown significantly, and there were signs of spread to the lungs). This is not a pretty report. Nevertheless, I feel great, and am doing better externally than I have in several years. For this I am very thankful, but simultaneously cautious about the future. So. please continue to pray with me about this matter. The Lord is great and greatly to be praised. I put myself entirely in His hands. Nov 26, 2006 Sunday! Today was about as good as it gets. I started out by making breakfast, and then started a second batch of turkey and onions in the crock pot, so that we could enjoy more left-overs. We went to Sunday School and church services, and then came home for lunch. Then there was the obligatory Sunday afternoon nap. We made a batch of mincemeat cookies, and discussed business pricing. Then it was back to church for evening service, with lots of singing, pretty good preaching, and an opportunity to see lots of friends. I like Sunday. Can you tell? Nov 25, 2006 Today has been remarkable. I accomplished more actual physical labor than I have been able to in many, many months. Yes, there were the usual kitchen duties, but then, since it was a beautiful day and the temperature was warmish, I first washed the pickup truck (it was filthy after two unwashed years, outdoors, under the trees) which took a lot of scrubbing. We then took the truck to the gas station to fill the cans for the yard machines. Then I put on the backpack-mounted leaf blower and moved many bushels of leaves from all over the yard out to the front curb, where the city picks them up. Once that was done, I got out the pressure washer and extension ladder, and cleaned the green mold off of the north side of the business. What a day. The Lord has been good to me! Marie left for Dallas at about 9 a.m., and phoned more than twelve hours later to tell us that she had arrived OK. It was very nice to have her here. She is always welcome, but her opportunities to visit are limited. We commented that she has now lived longer away from home than she lived with us. This does change the relationship somewhat. Now we get to see her as she has chosen to be, but we also see how some things we ingrained in her are there for good. Nov 24, 2006 With Marie in town, my normal schedule has been changed quite a bit. I will be back to writing shortly. Suffice it to say that things are continuing to go very well indeed, and that we have very much to be thankful for. Nov 23, 2006 Our daughter Marie arrived from Dallas just after midnight. It is a twelve hour drive for her, and so this is a major event. Hooray! Early today I started the turkey. Because we are normally just the two of us (and three on big holidays) we no longer cook a whole turkey. We get a 2-1/2 pound Butterball boneless turkey breast, and slow-cook it in the crock pot along with onions, potatoes, and carrots. The taste is great, there is enough for our needs, and the timing of dinner is very flexible. There is about a two hour window where the turkey will be just fine, and so we can adjust the timing of everything else accordingly. Supper is at four p.m. – maybe, if that is when we want to eat. I am smiling today, can you tell? The Lord has blessed us in every way, and I have every possible reason to be thankful. Thank you, Lord! Amen! Nov 22, 2006 The miracle continues. I continue to feel better day-by-day. Yes, I know, the oncologist has not declared it over yet (not even remotely), but still, I am extremely thankful for every good day. Having seen hard times, I really do appreciate the good times. To be back to feeling normal, after nearly two and a half years of feeling pancreatic adenocarcinoma rotten, is a wonderful thing. Today was the initiation of the kitchen. We had planned to use it for Thanksgiving, and this is working out just fine. Bit-by-bit, we are moving the pieces we need from the old apartment kitchen in the back building that we have been using for the last nearly four years, into the new kitchen in the main house. How amazing it is to be able to cook and eat in the main house. So today I made some of the family favorites: four bean salad, broccoli-rice casserole, and two of our favorite holiday pie recipe (two thirds rhubarb and one third red raspberries). Monica made the Waldorf salad. Many, many thanks to all who helped make that kitchen possible. There are about two dozen volunteers who helped out in many wonderful ways, and without that help, this would still be just a dream. Nov 21, 2006 I feel great! The reversal of the previous pain from the pancreatic cancer continues and improves, as I regain my strength. The only soreness is of the muscular kind, brought about by moving boxes about and scampering up and down the ladder to set up and load kitchen shelves. Some will worry that the oncologist has not yet given me a clean bill of health. Have you ever been to an oncologist? Do they ever give someone a clean bill of health after having cancer? Well, never mind. I feel great, and am praying for a full, long term recovery, and you can pray with me for that. Things are great, and I am happy. We are making good progress on moving into the kitchen, and yesterday's business property tax audit went just fine. I have this week off from work so that we can get more done, and this is working out very well. Our daughter, Marie, is planning to be here for Thanksgiving. Her arrival time is dependent on when she can get out of the office in Texas, and how long the drive from there to here actually takes. So much for now. I have been pinned down for so many months that now that I feel better I can barely wait to get back to doing things. Nov 20, 2006 Yesterday was great. First there was Sunday School and church in the morning, lunch, a short nap, and then an afternoon taken up with moving boxes into the new kitchen, removing their contents, washing them in the dishwasher, and putting thing away. This involves thinking about where we really want to put things, which slows things down a bit, and waiting for the dishwasher to do its thing, which takes a bit longer, but all in all progress is fine, and all is well. Today's adventure is a business property tax audit. It turns out that our county is strapped for money (aren't they all?), and is busy auditing all of us dubious folks who own small businesses. So last night we went over the list from last year, and are doing very well for declaring every business thing, so that we can pay taxes on every shred of stuff we use in our business. But since we “live over the store” all of our personal property is in here too, and the combination should make it interesting to see how much hand waving is required in order to explain, “This is not a business property item, that is mine personally.” We shall see how this turns out. Other than that, there is now another day of moving things into the kitchen, cleaning them, and putting them away. I dated the boxes when I packed them, and most of this is dated February 2004, when I was busy emptying the house in Huntsville. I personally packed the kitchen myself, and stacked stuff in the pickup truck, drove it here to Guntersville, and piled it up in great piles in our outbuilding. It was stacked to the ceiling in places. So now we are finding things we have not seen in nearly three years. If all goes well, it will be ready for use on Thanksgiving. I continue to feel better, day by day. Some are concerned that the oncologist did not give me a clean bill of health this past Monday, working from his month-old CT scan. He merely called what had happened, “highly atypical.” Well, it is not over until it is over, and I am not worried. I treasure each good day, and refuse to worry about tomorrow. The Lord is great and has provided me more time to live. There are no long-term guarantees for me, but then again, there aren't any long term guarantees for anyone else either. So I am very pleased to feel good and do what I am able, today. Yesterday is gone, tomorrow is merely in the planning stage, but today is here and it is very good. Nov 19, 2006 Sunday! I really enjoy every Sunday. Today I get to be with my Church Family, and that is always a treat. I have no blood relatives who live within 500 miles of here, but my Church Family is always there. Yesterday was fun. I felt good enough to run the leaf blower, and did so not only on the ground but also on the roof, where I got the many bushels of leaves out of the valleys in the roof. That is necessary to keep the roof in good condition. Monica helped me put up the ladder, and then I climbed up there with the backpack type leaf blower, and took 20 minutes to blow every reachable leaf, twig, and acorn off the roof and to the ground. They will be back soon, since the two 100-foot-high water oaks in the front yard have lost only about a third of their leaves so far. Nevertheless, it is a good start. It feels good to be able to work again. I thank the Lord that He has been so good to me, and let me once again feel good. After a couple of years fighting metastatic pancreatic cancer, this is a very positive change. I have no guarantee as to how long this will last, but every day I praise the Lord for a new day to be able to serve Him. Amen! Nov 18, 2006 Today we are putting the last finishing touches on the kitchen, and are bringing over the kitchen dishes, utensils and such, to be washed before being put away. This kitchen remodeling which we began in January of 2003 is finally to the move-in point, and this is a great feeling. Many people helped us bring this to completion, and I wish to thank everyone who has been involved. You made the impossible actually happen. We have lots of time to do this because the photo business has been incredibly slow this month. We ran special ads to do free sittings if people would bring in cans of food for the United Way Canathon, and our actual response was zero. I cannot remember a time where we have run a promotion and had absolutely no one call. So we have lots of time today (Saturday) because the calendar was cleared for the special promotion. We will make the best use of the time, and get the kitchen finished off. It is good to feel good enough to do this kind of physical labor again. Nov 17, 2006 What a wild day. Today I did something I have not done since March of 2006, and drove to the office in Huntsville, all by myself. This was the day of the Thanksgiving Luncheon, and I have plenty to be thankful for, so I made one of our favorite casseroles, and brought it along. Monica was not too sure I should do this, but I did, and it felt good, although it was rather exhausting. They had kept my office pretty much unchanged, and so I could sit right down and work. On the other hand, they had changed the configuration of the computer enough that Windows XP was needing to be reauthorized. Microsoft is so incredibly arrogant about that – change a hard drive or two, and maybe a video card, and Windows XP goes off in a huff and refuses to work, because you might, maybe, be pirating their very precious intellectual property. The Linux installation still worked just fine, however. I got to do some hands-on development work with some fancy electronic hardware that I designed for my company, and it was interesting to actually see it working. I need the interaction with people, and I need the interaction with the technology to get better at this, and it has been hard being home-bound for nine months. For now, at least, that is over. So now, for a daya week, I can be in the office. The rest of the time I plan to continue to telecommute, at least until more strength returns. I am enjoying the miracle, and am very thankful for it. Nov 16, 2006 I did not write sooner because I had a computer crash, and I had to rebuild it. That is a small problem, and easily fixed. It merely slows things down a little. On Monday I went in for my usual biweekly infusion with gemcitabine. The appointment was for 11:20 a.m., which meant that they were already backed-up. We arrived at 10 a.m. for the blood test, but did not get that done until after 11:20. Then there was an interminable wait while the blood work was done, and they found me a seat in the infusion room. Once I got seated there, the nurse asked me the usual questions, which boil down to, “What had changed?” Since things had taken such a turn for the better, she decided I really needed to see Dr. Posey before we continued, so I was sent to wait in the patient waiting area, and eventually Dr. Posey and Jill, the Wonder Nurse saw me. Dr. Posey was astonished at the turn of events. Apparently this kind of turn around just does not happen. So he went and looked at the now month-old CT scan results, and said he said that if anything things actually looked worse, and that he would take the matter up in the Friday conference that the oncology doctors have with the radiologists. The month-old CT scan report he read showed full up metastatic pancreatic cancer, including the peritoneal cancer already mentioned, plus spreading bone cancer, as well as apparent spreading to the base of the lungs. That is truly an ugly report, but as I say, it is a month old, and whatever they see, I feel the best I have in three years. Eventually, I was sent back to the infusion waiting area, and after another wait they infused my 1.8 grams of gemcitabine, and sent me home. The whole process from leaving home to getting back took a full 12-1/2 hours, and was exhausting. Now, fellow prayer warriors, we have another matter for prayer. I feel like I did three years ago, before the cancer incident started. Life is very good indeed. But there are still some matters which need resolution, and I ask that you all would pray with me that we can get the rest of these matters solved. If the Lord can do the one, He can most certainly do the other, and that is what I am asking for. Nov 12, 2006 What an amazing Sunday it has been! I feel good enough now to begin resuming activities, and so I did. The day started out at 4 a.m. when I woke up and got started. I prayed for a bunch of people, studied my Sunday School lesson, and headed off for the Men's Fellowship breakfast at 7 a.m. When that was over, I went back home for an hour, and then headed with Monica off to Sunday School and Church services. After having been home-bound for much of a year, this is a major change. After Church service, we came home, and I made lunch for us, and then got going on doing the finish carpentry for the last of the trim work to finish out the kitchen remodel job. All of the floor trim, base molding, and window trim is placed now. Next, we had a light supper, and then we moved the timer for the light on our front yard photography business sign from the basement to the back porch where we can reach it more readily. Then we went off to evening Church service, and then home again. It was both thrilling and exhausting, all at once. The only thing I feel now is the soreness that comes from using a lot of muscles that I haven't used in many months. That is amazing, and it will pass quickly, as they get more used to being used. The energy level now is as high as I have seen since about three years ago, well before the cancer was diagnosed. It is like a switch was suddenly thrown, and what was missing is suddenly there. I like it! The Lord has been so very good to me! Nov 10, 2006 Praise the Lord! Amen! Things continue on a rapid upward course. I am, of course, thrilled with this outcome. I am praying about what it is that I should do now with a life which has been returned to me. This is the Lazarus question: “What shall I do about this? I was (as good as) dead and now am alive again. Before there were nodecisions to make, but now there are. What shall I do today?” What a great question to be able to ask! Lord, please show me what it is you would have me do with the new life you have granted me. Nov 9, 2006 It is amazing how much better I feel today. I got probably seven hours of sleep, feel rested, alert, and ready to go. The energy level is twice what it was last week. Being off the pain medications is a Very Good Thing. This is day five, and the withdrawal symptoms are pretty much over. One thing which is obvious, though, is that nearly nine months without any meaningful activity has had quite an effect on my strength, stamina, and flexibility. Now that the cancer seems to be in retreat, it is necessary to think about what is required in order to get back into shape. The first point is to resume normal activities, as much as possible. Yesterday I got out my euphonium, oiled it up, and did scales on it. I have not touched it since the cancer incident started two years ago, and the lack of practice is painfully obvious. On the other hand, I very much enjoyed it, and the muscle memory will come back quickly. I also spoke with Bill Cain about playing that euphonium in church services, and he was most receptive. So I am looking forward to that opportunity. Today Richard Moebes is taking me to the shooting range for an hour or two, and we will put holes in paper targets. Once again, I haven't shot since the cancer started, but it will return, given time. There are other activities on my list, walking being near the top, that will help. Guntersville is a small town (population 8000) and we live just a few blocks from downtown, so there is plenty of opportunity to walk and get things done. Life is good! I want to thank all of the Prayer Warriors who have been raising my cause before the Lord. Your prayers were heard, and answered this month. Doctors don't talk about miracles – they cannot depend on them for their practice – but we are seeing one right here and right now. No one figured I would make it to Christmas, and yet here I am recovering at maximum speed. Thank you, Lord! Amen! Please keep praying! Nov 7, 2006 Assuming you have been reading my blog, and assuming that you have duly prayed during the last few days, THANK YOU! This has been a very challenging triumph if ever I did see one. The cancer pain was mostly gone, and so I figured it was time to also be rid of the pain medication, and that was much easier said than done. Thank the Lord He made it possible and direct. Stop taking it all, all at once, and spend a couple of very strange sleepless days with every possible bodily sensor turned up to the max, feeling many, many things that simply were not there. It is over now, and I can once again sleep. The pain is still gone (nothing bad was being masked by the pills) and I no longer need to take them. Hooray! Now, a word of caution from Our Sponsor. Just as surely as Jericho was followed by Ai, I expect there to be a special challenge round for me today. What it is I do not know, but seldom have I seen victory of this magnitude which was not followed by "interesting" testing. So please keep praying with me, and this victory will be complete. One more unusual (and good) thing happened through all of this. The best place to sleep was back in bed, instead of the big chair. Sleeping on either side is painless now, and I can stand being on my back for a couple of minutes. You may recall that this particular round of pancreatic cancer announced itself when I could no longer lie down to sleep. So this is a major positive change. Keep praying! I would like to be over this round of cancer, and I can see it may well be within reach. Nov 6, 2006 I get many emails from friends and relatives of pancreatic cancer patients, and the stories I hear are heartbreaking. I realize that just because my case is amazingly better than many (may God be praised) that there are others who fill in the rest of the statistics which make up a terrible bell curve. The vast majority die rather quickly from this evil disease, and it is a horrible death to die - very painful and humiliating. I sympathize with every case I hear, because apart from the grace of God each one of them could be me. Today's challenge is to get by without last night's sleep. I have been on oxyxontin for the pain caused by a couple of cancerous rogue lymph nodes since April, and they appear to have improved vastly, due to chemotherapy and heavenly intervention. So the pain was gone, but the oxycontin lingered on. So Sunday morning I didn't take my normal 40 mg of oxycontin, nor last night, nor this morning. In case you didn't already know this, oxycontin is very addictive, and so stopping taking it is a challenge. The side effects of stopping taking it are extremely convincing that you really should never stop, but keep on taking it, but that is not how I choose to live, because it is a way which leads to death. I remember my mother's inability to stop smoking, and I sympathize all the more now. She ended up with lung cancer from that addiction, and then it metastacised, and she had bone cancer and a brain tumor, and once that was solved, a traveling nurse gave her her shots in the wrong order, and she went into a diabetic coma and died. That was 25 years ago, and it still hurts. So for me addiction leads to death, and a miserable one at that. So off the oxycontin it is. I ended up not sleeping at all last night, while the oxycontin withdrawal caused wild chills, overheating, and absolute sleeplessness. I remember coming off of the “it's more powerful then morphine” epidural at the hospital two years ago. It was sudden, hard, and I was convinced I was going to die of a heart attack right then and there. I survived it, and got off of the pills they put me on after I left the hospital, in short order. The same will happen here. It will take a day or two more, and life will return to normal, without the evil painkillers. This is a case much like the Israelites taking possession of Canaan. It was given to them, but they had to work to possess it. Here is some information concerning oxycontin, how it works, and the dangers involved: http://www.narconon.ca/oxycontin.htm Pray! Please pray, as it is easier to write this than to live through it. This is a hard road. Fortunately, my Lord is carrying me again, or I never would get there. Nov 5, 2006 I have prayed about it, and decided that this is the day to stop taking the oxycontin. The obvious sources of pain have diminished. We still haven't heard about the latest CT scan results, but the talk was of the cancerous lymph nodes having responded to the chemotherapy, and they have been the apparent source of the horrible pain. So today is the day I didn't take my morning dose of 40 mg of oxycontin, and I am confident that the Lord will keep the monkey off of my back. I plan to just not take that any more, through the Lord's strength. We will overcome not only the cancer but the drugs which they prescribe to tame the cancer and its pain, with the Lord's help, and in His strength. There is a side implication from this, and that is that within a week or so I should be legal to drive again. (There has never been a question of my being safe to drive, but the oxycontin would make it a felony to do so.) Having been home-bound for the last six months has been a learning experience. There is a humbling part of where the Lord has led me, and this is one part of it. I was used to going where I wanted, when I wanted, and found it very constraining to be entirely at the mercy of others to get me where I need to go. Now I must remember that and be willing to help out others who are in the same predicament. The Lord has given me the confidence that I may indeed live again. It has been a hard time going through this valley of the shadow of death, but He has led me through, and here I am. My feet have reached the other shore, and I was carried the whole way. My Lord carried me the whole way. May the Lord be praised and glorified! Happy Sunday! Nov 4, 2006 Today is a great day. I feel pretty good, and there are kitchen projects to work on. I think I'll head in that direction and get started. Nov 3, 2006 Thank God, the nausea has passed. I do not yet really know the cause of it, whether it was a virus or related to the chemo, but in another week and a half there will be another chemo treatment, and if the nausea comes back, I will assume that it is a new chemo “feature.” Nausea is one of the most common side-effects of chemo, so I would not be surprised, although since I have been taking the same chemo drug (gemcitabine) continuously for the last five months, I would normally expect to have had the symptom before now. However, I suppose that it is also possible that I could build up an intolerance to the drug. We shall see, All progress on everything else stopped in the meantime. So it is a good feeling to be able to look forward to a day of accomplishment rather than getting nothing done on top of not feeling good. For whatever reason, I always feel better if I can make real progress toward some goal, and get to the end of the day with some visible things to point to for daily accomplishments. The Lord is so very good to us, regardless what we have deserved. I give thanks that He loves and supports me, through all of this strange medical wasteland of cancer. I do not know what to expect today, let alone tomorrow, but I trust that He will provide all that is needed. May He glorify Himself through what He does in my life. Hymn time! Lo! He comes with clouds descending, Once for favored sinners slain; Thousand thousand saints attending Swell the triumph of his train; Alleluia! God appears, on earth to reign. Every eye shall now behold Him Robed in glorious majesty; Those who set at naught and sold Him, Pierced and nailed Him to the tree, Deeply wailing, shall their true Messiah see. Those dear tokens of His passion Still His dazzling body bears; Cause of wondering exultation To His ransomed worshippers; With what rapture praise we him for all His scars. Yea, amen, let all adore thee, High on thine eternal throne; Savior, take the power and glory, Claim the kingdom for thine own; Alleluia! Thou shalt reign, and Thou alone! - Charles Wesley Nov 2, 2006 Things are a little better today. I may have picked up a case of the flu (or something similar) when I went for my chemo treatment at Kirklin Clinic on Monday. It is either that or my reaction to the gemcitabine is worstening by leaps and bounds. Tuesday and Wednesday were grim. Today I was able to get up, and we shall see if I can do much more than that. Oct 31, 2006 Extreme nausea. Oct 30, 2006 As I write this, I am working on the little IBM ThinkPad R40 laptop computer, in the Kirklin Clinic oncology infusion patient waiting room. The majority of time involved in medical care is absorbed by waiting, and so this at least puts the time to good use. I have seen just a few others bring their computers to the clinic, almost all no more than half my age. Looking around the waiting room I can see that everyone seems to be my age or older today. Cancer is not really only a mature adult's disease, but statistically we are in the majority. This morning my port was blocked up, and so Michael the oncology nurse had to use a special chemical treatment on it to make it flow again. He injected the special sauce, and I prayed, and twenty minutes latter it was flowing again. So the blood sample was taken, and I was sent off for my CT scan. In spite of the fact that I have a port, and the port was “accessed” and ready for the day, the CT scan technician hooked up an IV to my right arm to inject the contrast solution. That was painless, and the only question was whether or not I would be able to lie out flat without excruciating pain. I was extremely pleased to find that the pain level is down to about ten percent of what it was ten weeks ago at the last CT scan. Something has changed, and we are praying that the CT scan will give the doctors the visibility they need to see what has happened. An accurate diagnosis would be a Very Good Thing. The kitchen remodel job is very nearly complete now. We made a short list of tasks which need to be completed before we move in, and have been diligently working our way through the list. If all goes well, we may have the tasks completed by the end of the week. Praise the Lord! This is a day we have been waiting for ever since we moved in nearly four years ago. Living in a building without a working kitchen is a challenge. We are on the verge of not only having a kitchen, but having one set up for exactly our needs. This also is a Very Good Thing. Oct 29, 2006 Today is Sunday, and Sunday is my favorite day. Tomorrow will include another trip to Kirklin Clinic for a blood test, CT scan, and a chemotherapy infusion, but today I needn't worry about it. Take one day at a time. Borrow no trouble! We had church this morning, a light lunch, and a pretty good nap. Sunday is the one day of the week where I am not merely allowed, but actually expected to take a nap. This is a very good thing, as the chemo still leaves me rather flat. Oct 27, 2006 After several months of sustained chemotherapy using gemcitabine, I am developing a case of “palmar-plantar erythrodysesthesia” also known as hand-foot syndrome. In my case, the skin of the hands and feet cracks and comes apart, behaving much as if it had been sunburned and blistered. I last saw this when I was being treated with Xeloda during 2005. It is apparently caused by the inability of the body to repair cells as fast as they are injured, which makes sense since this type of chemotherapy directly interferes with the replication of DNA in the cells. This is just one more sign that the chemo drugs are working. So far it is only a mild case. Aaron Cooper came by yesterday to mow the lawn and do some yard clean up. We thank God that there are so many friends who are helping us get the things done which we cannot do right now. The Lord has provided through those who love Him, and show it by helping others. May the Lord bless them richly. Oct 25, 2006 Let's see how far I can push things. Yesterday I ran all the way to exhaustion, and feel pretty good about it all. Since the back pain (apparently caused by cancerous lymph nodes) has declined very markedly, and since the tumor marker is way down, I thought I would push my limits a bit and walk to the Guntersville post office, in order to get the mail from the post box. I have not been able to walk this far in six months or so, because of the pain. The fall day was perfect for the adventure – beautiful and sunny, with an air temperature of about 50 degrees F. So I put on my old Levi's jacket and broad-brimmed fedora, and headed out. I walked very slowly the whole way, and stopped at the new Outfitter store for a break about 2/3 of the way there. There was no problem getting to the post office, although I had already spent the available energy on this one-way trip. So I rested for a while on the indoors steps in the post office, and then slowly walked back. It was a beautiful day, and I had what I would say is a beautiful experience. Now I need to be able to do this day after day, and perhaps I can get some of my strength back. Oct 23, 2006 Fellow cancer patients: what does it mean when you wake up in the middle of the night sweating profusely, feeling hot and cold at the same time? You check your temperature, and it is quite normal. You take a shower and it is both much too hot and too cold all at once. Many fellow cancer patients know the answer to this question: you forgot to take your pain medication last night, and these are the beginnings of withdrawal symptoms. That is exactly what happened to me last night, and you would think that I would know by now what has happened, but it took me an hour to figure it out. I took my dose once I figured it out, and within fifteen minutes was feeling normal and back off to sleep. One of the difficulties with cancer pain is that it can be very harsh, and is treated with some of the most potent of the pain killers. These are typically opiates, and are quite addictive. I hope to get well enough soon to get off of the pain killers, but I realize that it will be with the knowledge that when I do, there will be a couple of difficult days while my body rids itself of this awful stuff. The cure is sometimes nearly as bad as the problem. Yesterday was a success. There was Sunday School (Yay! I love these people!) and church. Then I sent Monica off to Tuscaloosa, Alabama for the Fall Seminar of the Professional Photographers of Mississippi and Alabama. I didn't go this time because I need to hold on to whatever vacation days I have in case I am hospitalized again, and run out of sick leave. Then after a nap I cut the pieces for the floor trim in the kitchen, using the wonderful 80-tooth Freud super carbide blade and the radial arm saw (the cuts are smoother than if they had been sanded or planed). All of those boards are cut, and maybe tonight I will get them finish-nailed in place, which will complete the placement of the painted trim in the kitchen. One more milestone completed. I hope that we will be able to start the kitchen move-in by next week some time. Hymn time! For all the saints who from their labors rest, Who thee by faith before the world confessed, Thy Name, O Jesus be forever blessed. Alleluia! Alleluia! Thou wast their rock, their fortress and their might; Thou, Lord, their captain in their well-fought fight; Thou, in the darkness drear, their one true light. Alleluia! Alleluia! The golden evening brightens in the west; Soon, soon to faithful warriors cometh rest; Sweet is the calm of paradise the blessed. Alleluia! Alleluia! But lo! There breaks a yet more glorious day; The saints triumphant rise in bright array; The King of Glory passes on His way. Alleluia! Alleluia! From earth's wide bounds, from ocean's farthest coast, Through gates of pearl streams in the countless host, Singing to Father, Son and Holy Ghost: Alleluia! Alleluia! - William Walsham How Oct 21, 2006 Today has been a physically challenging day. Two friends came over to help with the kitchen remodeling, and I got more involved than I have in months. Mike Thompson arrived at 9:00 a.m. and finished enclosing the wall between the kitchen and the back porch. He added two more sheets of ½ inch plywood, and trim pieces top and bottom. All it lacks is paint to look finished. Thanks Mike! At about 9:30 a.m. Richard Moebes showed up, tool belt in hand, to help Diehl install the trim on the two kitchen doors. The job went slowly and carefully. Reuben Fryer had already painted the pieces to be installed, and so Richard and I carefully measured, cut, and nailed the various boards into place. This is an old house, and it was necessary to do some extra work to make the style match the other doorways in the house. It took until 3:30 p.m. to get it all done, but once again, all it lacks is some finish spackle and paint to be complete. These are jobs I can no longer consider doing by myself, but with the help of wonderful friends, they are completed. Many thanks to Mike and Richard! Beyond that, many thanks to Jesus for making it possible to live here, and to have these great Christian friends. We are so wonderfully blessed. Yes, my health situation has bordered on disaster for a couple of years now, but it has made us closer to a number of people than we have ever been. Without the pain the blessing would never have come. Oct 20, 2006 For as long as I can remember (decades) Thursday nights have been when my energy ran out and I crashed early. This week was no exception, and yesterday evening I barely made it past 7 p.m. before going directly off to sleep. It is one of the things I do really well now. Of course, the cancer and chemotherapy have added to the general exhaustion level, and there is a part of me which says that now every night is Thursday. That having been said, yesterday evening I was able to do some more work on the kitchen before 7 p.m., and took care of a chore which has been on Monica's list for several months. The task involved sealing up the opening around the doors, before the trim is installed. I used this gooey, sticky foam in a can material. I have to say that it seals things up well, but it is a real mess to work with. Careful work with masking tape and lots of plastic wrap made for an easy cleanup. The disposable paper drop cloth (well-used going into this little job) was pretty well covered with blotches of sticky yellow foam and so it was tossed as well. But the sealing is done, and Monica is happy about that. The question arises, “How then shall I live?” A few months ago, it was assumed that I would not be here much longer. Now, however, that is less certain. By now it is obvious that I do not and cannot know what the future holds. I must trust the Lord day-by-day. What shall I do today? Yes, of course there is the daily routine of prayer, loving, working, eating, and sleeping. Perhaps the question should be, “Is there anything that I should stop or start today?” Today is the only day over which there is any control right now. Besides my daily routine, what should engage my attention? I want to live life to the max. I want to live life for Him. Oct 19, 2006 This week has brought with it several surprises. One is that the CA19-9 “tumor marker” from Monday's blood test was less than half of what it was nine weeks before. That is a very major change. Another surprise is that much if not most of the pain from lying down has vanished. That pain is what drove me to the emergency room back in March of 2006, and it has been a constant in my life since then until very recently. Now, however, I can lie down for five minutes and not hurt, and I can once again stand up straight. Dr. Posey asked specifically about this on Monday, because his hypothesis is that the back pain was not related to the back skeleton or muscles at all, but instead caused by strain on cancerous lymph nodes inside my peritoneal cavity. Since the pain is reduced, and since the tumor marker is very much lower, he indicated that the chemotherapy is doing what it is supposed to do, in killing off the cancer embodied in those peritoneal tumors. So what I am seeing here seems to be a best-case scenario. Pancreatic cancer is notoriously hard to control, and yet there are these indications that we are making real progress. That is why Dr. Posey said we should continue with the chemotherapy based upon gemcitabine for another eight week round, as long as I can tolerate it. This really is great news. May the Lord be praised for all of this. I honestly do not know what to dare to ask of the Lord right now. I am extremely thankful for the respite from the cancer growth. Remember that until Monday's consultations, we had seen this set of tumors only get worse. To see a rapid reversal is wonderful. I ask that my prayer partners redouble your efforts on my behalf. Seek the Lord's will with me, please. I want to glorify Him with my life, however long or short it may be. Also, please pray that I will have the right attitude in all of this. This is the Lord's doing in my life, and so He must receive all of the praise. Oct 18, 2006 The week of the chemotherapy treatment is a time of exhaustion. Between that and the high pain level, it is hard to accomplish much. I continue to go through my daily routine, and some things actually get done. Having an interesting job helps keep my mind off of my troubles. Yesterday we had one major accomplishment, that being that the kitchen plumbing was completed. Bob Cattaneo installed the sink, garbage disposal, dish washer, and gas stove. There was one problem where the counter top installer had not made the hole large enough for the sink. Diehl (with the able help and advice of Derek Strembicke) used his router to enlarge the necessary parts of the hole, and then the sink went right in. So the last of the major appliances have been installed. Trim work remians. After living here for more than 3-1/2 years, it will be nice to finally have a kitchen in the house. Maybe in a couple of weeks the trim work will be done and we can move all of the kitchen utensils in. The Lord is so very good to us. What have we needed that He has not supplied? Oct 17, 2006 This has been a difficult few days. I have not written partially because of overload, and partially because of feeling too discouraged to write. Yesterday was the big day when I was scheduled for a full day at Kirklin Clinic in Birmingham, for blood tests, a CT scan, a visit with Dr. Posey and Jill the Wonder Nurse, and a chemotherapy infusion. It has been nine weeks since we have seen Dr. Posey, and during treatment for pancreatic cancer a lot can happen in nine weeks. So we went. The 75 mile drive down highway 79 was uneventful, and we arrived with plenty of time. We started out at the blood test area to pick up the labels for the blood test vials, and then proceeded to the infusion area where Michael “accessed” the port, and drew blood for the blood tests. He left the plumbing hooked up to the port for later use, and sent us on our way to Radiology for the CT scan. This is where the day went funny on us. There was no CT scan appointment. Why? Well, because, in their infinite medical wisdom, Blue Cross Blue Shield of Alabama had not approved one, of course. Monica by now knows better than to get me involved in the negotiations for this and went off to play Mama Bear with the powers that be. She got absolutely nowhere, and BCBS decreed that if we would come back tomorrow, they might have a decision. Maybe. You see, they have outsourced their decisions on such things to an outfit in New York, which something tells me just fronts for a set of doctors in India or Bangladesh. In any case, there would most certainly not be a CT scan today, because BCBS is practicing medicine and deciding that such a thing is not medically necessary today. Oh yeah! So, when we saw Dr. Posey, we had an exercise in futility in diagnosing what was going on. The good news was that the CA19-9 marker went down for the first time ever since the first of the year, from 76 nine weeks ago to 30 yesterday. The bad news is that without the scan, there was not a way in the world that they would be able to definitely tell me whether the swollen right leg is cancer related (the main tumor, the last time we looked, was wrapped around some major abdominal blood vessels, and involved some of the lymphatic system) or whether I might have a blood clot which should promptly be treated some other way. So, quite in the blind, the decision was made to continue on the current regimen of gemcitabine treatments. After that, we went back to the infusion lab for this week's infusion of gemcitabine, which took another two hours. So we got out at about 4:30 p.m., and barely made it back to Guntersville in time to get to Bunch Pharmacy to pick up the latest prescriptions. What a day! It would appear to me that we in the USA are rapidly closing on having all of the drawbacks of socialized medicine, with none of the purported benefits. It is partly privately financed, but the controls are given over to remote bureaucrats who determine who shall live and who just isn't worth it. BCBS is our local health insurance near-monopoly (in Alabama, it is the vast majority carrier) and controls just about anything. My coverage is the best there is here (Thanks to my employer, Aegis Technologies, and the insistence of the owners) and for that I am very thankful. Nevertheless, it would seem that for cancer patients, there is a very real problem. Even when I arrange my life to fit their schedule (we did wait nine weeks for the next scan, as BCBS demands) they still are capricious in their behavior. What am I supposed to do? I know it would cost less if I would just promptly die (cancer is notoriously expensive to treat) but it would seem that they could probably not put that statement in any of their sales literature. The medical facility which I am using is state-financed (all run by the University of Alabama, Birmingham) and they appear very well run. It is the insurance company which is playing god in this little drama, and all in the name of proper cost controls. I am so very unimpressed. I will not minimize or skip over that CA19-9 reading I spoke about above. To all of my prayer partnrs, thank you very much, and keep on praying. I am hoping that it may yet be possible to beat this hideous thing called pancreatic cancer. One favorable reading does not constitute a full victory, but it is one battle won, and I take it as a sign that more is available if we ask for it. The Lord is faithful and merciful, and has been so very good to us throughout this matter. Amen! Oct 13, 2006 It may not be obvious by what I write, but I can be prone to discouragement. All of the big things in life can be going rather well, and yet some minor irritation comes to the forefront of my mind, and camps out there, getting all of my attention. For instance, things have been going as well as they can for a stage IV pancreatic cancer patient. Sure, there have been symptoms, but for the most part, my quality of life is very good under the circumstances. I have had great interactions with friends and family, Monica is obvious about her love for me – things are good, really good. And yet, I have been discouraged over the progress on the kitchen, and it has taken away my joy. All progress came to a halt two months ago, after the installer that Lowe's provided to install the counters botched the job, it took Lowe's six weeks to decide what to do, and then after replacing the botched counters with new ones, the installer did a seriously ugly job of trim work. It is irritating, and it has come to occupy too much of my mind. This should not be, but all too easily my focus gets diverted from all of the good things in life, and I stare at and pick at the one minor irritation I see. Lord, forgive me and help me to keep you foremost in my mind and in my life. Rev. Keith Cook came by yesterday, unannounced, and brought by a prayer shawl, a lovely warm hand-knit green one, which the ladies of his congregation make as part of their ministry. He said it was to wrap up in, to represent being surrounded by the prayers of God's people. I was truly touched at the thoughtfulness of the gift, and the intent of the givers. May Jesus be glorified by what these fine ladies do. Oct 11, 2006 It is interesting to see how people adapt to their situations. I try as much as possible to retain every bit of normalcy I can, in spite of the pancreatic cancer, its symptoms, its treatment, and the side effects of the treatment. I choose not to dwell on that which I cannot do, and instead I enjoy that which I still can do. By now, I am very nearly “home-bound.” since I cannot drive, and am unable to walk very far. So instead of pining for what I used to be able to do outside of the house, I do more of those things which I can do at home. So, for instance, I am spending quite a bit more time enjoying myham radio hobby than I have for many years. It is one of those things I got into as a pre-teen, and kept doing at some level every since. Its main advantage is that it is something I can do which does not require that I leave home, and can be done even when stuck in bed. Several local friends helped me set up a little ham radio kit which sits in a fold-up desk, next to the reclining chair in which I sleep. It is small, unobtrusive, and very effective at providing frequent social contact, something which the home-bound frequently lack. Some of you know of our seemingly interminable kitchen project (for the last nearly four years we have lived here with no kitchen in this building). Well, yesterday, Lowe's made good on their promise and sent out a different counter top installer, who took out the previous poorly-installed counter tops, and did the entire job over. This is much, much better. The installer will be back on Thursday to do the edge finishing, which had to wait until the glue fully hardened. Once that happens, then Bob the plumber can come back and finish installing the sink, garbage disposal, dish washer, and the gas lines for the stove. We have been waiting a long time to reach this point, and so this is a most welcome milestone. By next week, we may finally be able to start unpacking the boxes of kitchen utensils which have not seen the light of day since we moved from Huntsville. My right leg continues to improve. The inflamed and bloody rear end is still a painful problem. There are other appropriate symptoms for a stage IV cancer case, but all-in-all I am impressed that the symptoms are no worse than they are. We had been warned that the quality of life would deteriorate faster than this, and we are both very grateful that it has not happened yet. The Lord continues to provide every need, and we are very thankful. Please continue to pray. Our Lord is so close to us, and wishes to hear from us. Oct 10, 2006 Our Lord is great and Wonderful. He knows everything we are going through better than we do, and will never give us more than we can bear. I find the great hymns of the faith to be a source of inspiration, a reminder that although we cannot see the dimensions of what is going on, He is fully in control. Whether I get to stay here a while longer, or whether the Lord calls me home soon, it matters not to me. In either case, it is in His perfect will, and I will rest in His abiding love. I continue to be able to work part-time, the pancreatic cancer notwithstanding. The fact that my job entails computer aided design (CAD) of electronic devices makes this possible, as the entire job may be done sitting down, with my leg elevated, as-required. I am able to telecommute to do this, which means that I can use the CAD system here in my home office. The Lord has provided an optimal situation for one with a condition such as mine. I am grateful to be able to continue to work. Oct 9, 2006 This round of pancreatic cancer has forced me to slow down considerably from my usual pace. There is a level of “ought” which has driven me for many years, but now the “can't” has trumped the “ought” completely. I can choose to be frustrated by what I cannot do, or I can choose to trust in the Lord that He will direct the day. The latter is the better choice by far. The slowed pace is allowing me to stop and smell the roses, and to see just what a wonderful situation the Lord has prepared here. Yes, I am still slowly dying of cancer, but in many ways this is still the best our lives have ever been. The Lord is fully in control, and we can rest assured that He is God. Great is They faithfulness! Great is Thy faithfulness! Morning by morning new mercies I see; All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord, unto me! - Thomas O. Chisholm, 1923 Many thanks to all who pray. My right leg is continuing to improve. I do not consider the episode to be closed yet, but the swelling is mostly gone, and the veins are no longer shining through the skin so brightly. I will continue to keep the leg elevated, and to keep using the whole-leg compression stocking until allowed to stop the the doctor. It is good, though, to see rapid improvement. I am also recovering from a nasty episode to which, up to now, I have only alluded. There are some things which I normally do not talk about, but because I need to let other pancreatic cancer patients know that their symptoms are not unusual, I will talk about this one. Basically I have been is acute distress and pain due to an inflamed and bloody anal area. This arose suddenly, and after some detective work, we believe we know what caused it. Basically what I am suffering from is chemical burns, caused by a couple of spices in some very fine chili which a dear friend made for us. After the Whipple procedure, my digestive tract is somewhat shortened. In addition, I take several drugs which interfere with digestion, and speed things through rather quickly. What apparently happened was that the hot spices made is through the colon without being broken down, and chemically burned whatever they touched. I had this happen last year after a visit to a local Mexican restaurant, where the chorizo and chicken dish was very tasty, but caused nearly identical burns. I must learn to be much more careful concerning what I eat, and to ask that my friends who prepare food for me please avoid the spices. Sigh... Oct 8, 2006 Today was the highlight of my week – it is Sunday and I got to be with my Sunday School class, my family away from Home. They did not mind that I had to prop my right leg up through class, in order to keep the swelling under control. These fine people are the closest ones to us, the ones who will help when we need help, and who continue to pray with us, just as we continue to pray with them concerning their needs. I am glad to have a church home which I can enthusiastically recommend to anyone and everyone I meet. Some folks say, “Oh, that'sthe rich folks' church, and I wouldn't feel welcome there.” That is really too bad, because they have no idea what they are missing. Monica and I are not rich folks by any stretch of anyone's imagination, and yet we have been totally accepted there. We moved to this wonderful little city four years ago, knowing no one here, and have been loved enough to know that when we moved here, we moved home. Today is Sunday, I have been with my church family, and I am very encouraged. Many thanks to all who have prayed. The swelling of my right leg has gone down quite a bit. I am keeping it elevated, and wearing a full-leg compression stocking in order to do all I can to keep the symptoms to a minimum. The veins I never see are still showing through the skin in ways I have never seen before, but this is still better than Thursday or Friday. Furthermore, there is another new set of gastric issues which are quite painful. Things just don't pass well sometimes, and I am left very sore and bleeding now. This is something I have seen before, some months ago, and while it had healed up, it has returned as bad as ever. There are other issues which are miserable but which I will not detail here because there are still some areas of my remaining life I think it proper keep to myself. I am resolved to fight this to the end, and to be the person that the Lord would have me be. Please pray about that, as I want to keep the right attitude. I want to be faithful to the end. The Lord is very good to us! Oct 7, 2006 Friday very early I left a phone message at the oncology department for Jill (nurse for Dr. Posey) with the new symptoms, and a request that she call me back. She called, we talked, and she consulted with Dr. Posey. When Jill called me back, she double checked a few details, and said that the considered opinion is that the leg swelling up is probably cancer related, as opposed to being caused by a blood clot. As such, they will wait until the next scheduled CT scan (October 16th) to complete the diagnosis. Why wait? Why not do the scan on Monday? Well, with Blue Cross Blue Shield of Alabama, CT scans are not approved any more closely than every 60 days, and we are not there yet. Cost containment once again wins over proper medical care. Why spend good money on dying people, anyway? Other things are going "strange" on me, but that was predicted, since this is Stage IV cancer, and is continuing to grow unabated. As far as we can see, there is currently no thought on Doctor Posey's mind that this will ever reduce or go into remission. We fight this to the end, and then I get to go Home. We don't have any valid prediction as to when anything will happen. We keep working, and we watch and wait. It is like waiting for the Lord's return. We know not the day nor the hour. Oct 6, 2006 - Please Pray! Last night we had a minor shock. When I changed clothes, we noticed that my entire right leg had swollen up to about 140% of its normal size. In weeks past, I noticed and reported to the medical folks that the toenails on my right foot were consistently much bluer than the ones on my left foot, and this seems to be a furtherance of whatever was happening before. So I have called and left a message on the voice mail system at the oncology department of Kirklin Clinic, and hope to hear from them this morning concerning what I need to do about this. I am not really surprised at this sort of symptom. The CT scans have consistently shown that the peritoneal tumor is wrapped around several major blood vessels, and has been squeezing upon them more every day. So I am disappointed but not surprised in the slightest. Please pray with me about this. I have noted in this blog that this particular tumor is the most life-threatening of all of the cancer problems I am dealing with, and this is a sign that the tumor is continuing to grow, and that the symptoms are going to soon to get worse. If I am missing for a few days, you will know why. Please pray about this. Oct 5, 2006 – Second post I have received a fair number of emails from fellow cancer patients and their supporters asking questions concerning some of the treatments I receive. I have come to realize that many of them are relying on their oncologists for too much, i.e. they may not have another doctor looking after the non-cancer issues which occur. My experience has been that besides Dr. James Posey, my oncologist, that for pancreatic cancer I really need the help of Dr. Winter Wilson, my gastroenterologist. He is the one who has diagnosed the causes of the symptoms which ended up in my losing 35 pounds in six weeks. He is the one who figured out how to treat the low motility and the ulcers. Without him, life would be much more difficult. My point is this: your oncologist may be brilliant and hard working, and may correctly diagnose your cancer and prescribe the perfect treatment, but the chances are that he/she will not be an expert in quite a few of the areas which cause difficult symptoms which can come to dominate your life. Find and go to the GP or specialist who works in the areas appropriate to your set of problems. Assuming you are dealing with a major cancer center, they already have all of those people on-staff, people who can deal with your non-cancer problems in an appropriate manner. Life is too short to leave those issues untreated, and leaving them untreated may well shorten your life further. Do not be bashful whatsoever is seeking whatever specialist is available in the area of your problems. Just do it! Oct 5, 2006 I had a problem yesterday which was caused by forgetting to take my set of morning pills. Without the daily dose of the acid blocker, by stomach area was loudly complaining, and without the pain killers, my midsection, back, and thighs were getting sore quickly. I took the pills in the early afternoon, and within an hour or so relative normalcy returned. I used to look in wonder at my elderly relatives who had to take large quantities of pills to keep themselves going, but now I understand a bit better. When the choice is between spending large amounts of money for medications and having great pain, spending the money and taking the meds becomes the rational choice. Some of the drugs have terrible side effects, which may or may not be treated by taking other drugs. At every doctor visit, we are asked to bring in every last bottle of medication we take, so that the doctors can see them all, all at once. They really do want to make sure that what is prescribed (by the entire team of doctors) makes sense, and does not end up being worse than not taking any of the drugs. Still, I hate the side effects. The pain killers are particularly awful, since they deaden not only pain but pleasure as well. Physically feeling nothing at all is in fact better than being is constant unremitting pain, but it can be devestating in other ways. I despise having to take the pain pills. Although the doctors are treating the symptoms rather well, the cancer has not gone away, but is still growing. On October 16th I will be retested, with more blood work and a fresh CT scan, and I am scheduled to see Dr. Posey to hear the results from the tests. So far since February there has not been a single positive report. I do not know quite what to say about that. The Lord has promised not to give me more than I can bear, and I trust Him completely. So I will bring the matter before Him again, and patiently wait. I still must learn the lesson of Hezekiah (II Kings chapter 20), which I take to be that it is better to be called Home at one's peak rather than to be healed and fall away from the Lord. The Lord has blessed me mightily, and I will patiently wait on Him. Oct 4, 2006 Monday's chemotherapy infusion went well enough. There were no delays. Carmen did a fine job of doing the hookup, blood tests, and infusion. There were only two real problems, those being that I felt awful, and I got quite a bit of blood on a good shirt. For whatever reason, I have been getting increasingly sick to my stomach during the last week or two. This is one of the chemo symptoms that they warned me about, but since I had not seen it up to now, I had thought that maybe I was just lucky and had escaped it. Well, nausea is now a part of the routine, and that is never a good thing. After the chemo infusion, I felt particularly sick, and so the the 75 mile ride home was an exercise in self-control. As the traffic slowed and sped up, and the road weaved about, the effects were ugly and dramatic. I felt green – very green. Furthermore, the seat belt positioner tugged the shoulder belt tight across the bandages over the port, and I ended up with a big bloody blotch on a perfectly nice French-blue long-sleeve shirt. So I was a mess. I made it home, and went to lie down for a couple of hours, as that was all that would be possible. Yesterday, besides doing my regular job (completing the CAD design of a schematic and printed circuit board) I also sorted the remaining lumber out of the second garage, into the pickup truck, so that finally we could put Monica's Blazer in the garage. Keith Calvert came over late in the afternoon and helped Monica put the lumber in the storage area in the basement. (Thanks, Keith!) So now I will worry a bit less about our upcoming tornado season. Statistically, the tornadoes are not so likely to cause a direct problem, but the hail they very frequently spawn has dented many a vehicle here. So it seemed propitious to make it possible to store both of the cars under cover. I am afraid I made Monica a bit unhappy by starting the project, though. She is very protective of me, to make sure I have the energy to do what I really need to do. She would have preferred it if I had asked a friend for help up-front, but alas, I just saw what needed doing and started at it. I cannot help myself. I was trained well, so that when I see a chore that needs doing, my first instinct is to do the chore, rather than asking for help. Sigh... Cancer-related bodily malfunctions continue to increase. Some of the gastric problems are sufficiently gross and disgusting that I cannot talk about them here. I am hoping to continue a while longer, but it is becoming obvious that cancer and cancer treatment are not for sissies. Suffice it to say that I am in need of continuing prayer. Please pray that I will be able to face each day's trials as they come, and that I will not be discouraged nor dismayed. We have a wonderful Lord and Savior who, it appears, will soon call me home. In the meantime, I really do want to do whatever it is that He would have me do. My strength is failing, but I love Him all the more. Thank you, Jesus. Oct 3, 2006 My mother taught me a very important lesson when I was probably no more than six years old. What she said was that, regardless what bad things happened to me, that by the next day they were to be buried and never brought up again. I was never to linger in the past, and I was never, ever to hold a grudge. She told me of how in her family bad things were never forgotten, but were carefully preserved, to be brought out later when it would embarrass and hurt the other person the most. She had determined that, although she could not change many things in her life, that she absolutely would change that one behavior. As far as I could tell, she lived up to her goal in this regard, and I never saw her with any evidence of holding grudges. Even though she might be hurt very badly, she did her best to not relive that past, but go on to a future which would most certainly be better. I have tried to live up to my mother's expectations in this regard. When I married Monica, I married a young lady whose family was like my mother's family had been. Monica lived in fear that at some family gathering some family member would bring up some incident, and publicly throw it in her face, yet again, in order to intentionally hurt her. It took her more than a decade to realize that, true to my promise, I would never, ever do that to her. In return, she has tried very hard to break that cycle in her life as well, and to not hold grudges. It has been a difficult victory to achieve, but it has been mostly achieved. We love each other totally, and part of the way we show our love is to never hold grudges, and most certainly not toward each other. Monica is sometimes startled that, in short order, I can and do put things in the past. She will occasionally ask me about something that logically ought to hurt, only to find that not only am I not holding a grudge, but that I have, for the most part, just forgotten the whole incident. She is fully capable of, within a matter of seconds, reconstructing the entire emotional situation and trappings of most any arbitrary event which I may not even remember ever happened. The pain from such experiences is terribly real, and the fire hurts just as badly in memory as it did when the incident first happened. We work hard to work around these pains from the past, and for the most part, we succeed. It does not happen very often anymore, and we are both glad. So it was with some surprise that Monica saw me write an intensely emotional letter with regard to a so-called “Christian Counselor” this week. The issue I was dealing with was not for me, but rather for a good friend, whom I wish to shield as much as possible from what I have experienced as a totally failed process. The past is most certainly gone, and will never rise again. The question becomes one of how to deal with the current situation. What can I do to shape the process, to optimize the outcome, by my actions today? With regard to this, I do not have a good solution. I choose not to meddle, if I can at all help it. I will lead by example where I can, and hope that it will work. But what I describe are merely passive responses to active and ongoing problems, and sometimes only an active response will do the job. What ever shall I do? I am totally exhausted from the cancer and the treatment, and yesterday I had yet another chemotherapy infusion. Last night I had a hard time sleeping, so I prayed for my friendsfor hours. It frustrates me that I cannot be with my friends to help them – indeed right now I am so very sick that I have a hard time simply living at all. So I will pray and know that the Lord, the Almighty, the King of heaven and earth hears my prayers. He knows the way out, and I pray that he will show these wonderful people what His perfect will is, and provide the strength for their journey along the way. Now I am so very dizzy that I can barely sit up. I will go and lie down for a while. I hope that I will also have the strength today to do all the the Lord has for me to accomplish. Oct 1, 2006 I am totally exhausted. This morning is Sunday School and Church. This is the high point of my week. Yes! Monday (tomorrow) is the next chemotherapy treatment, which always lowers my energy level even further. If I do not post here for a few days, you will know why. Sept 29, 2006 I am watching a beautiful sunrise this morning as I sit here at my keyboard, and am reminded that the Lord has graciously given me another day to live. When things are going well all the time, it is easy to miss the greatness of the gift of life which we have been given. However, this cancer event has shown me that nothing should be taken for granted. I thank the Lord each morning that I have been allowed to live another day. Today I will show who I really am, and whose I really am, by what I do all day. Since I am His, it will most certainly show. Yesterday was a milestone of sorts, in a very simple way. Monica took me to Wanda's Restaurant for lunch (a local landmark, with home-style cooking, and only open for breakfast and lunch). Wanda has a different lunch special for each day of the week, and Thursday's special usually consists of roast beef, served with green beans, mashed potatoes, coleslaw, and “Texas toast.” Wanda will substitute tomato slices for the mashed potatoes, and that plus unsweetened iced tea is what I had for lunch. Yesterday was the first time in many months that I have been able to eat my whole meal. My Whipple procedure was performed on October 21, 2004, and I have been unable to eat a full meal ever since. Besides the reduced stomach size from the surgery, and the vastly reduced motility caused by the drugs, I have been battling intestinal ulcers which made it very painful to eat more than a tiny meal. Dr. Winter Wilson has been treating me for that, and yesterday we had a minor victory – I actually finished off my lunch at Wanda's Restaurant, without pain. I am thankful for such victories. Sept 28, 2006 Yesterday was our “semiversary,” our made-up word for being married 35 years, and a half. We take every excuse for a small party, and the semiversary is one of our favorite excuses. Since we were married on the 27th of March, 1971, we celebrate the 27th of each month as a “monthaversary” and every September 27th as a semiversary. We are happily together for this much longer, and we are glad. The cancer has not won the battle yet. Have you noticed that people with pancreatic cancer are virtually always surprised by it? Unlike the better known cancers, pancreatic cancer does not get any real public attention, and people have little idea what has hit them. I understand. I was surprised also, and really I still am surprised. What am I doing coming to the big hospital as a patient? Aren't I supposed to be here visiting someone else instead? Maybe they will figure out that it was all just a big mistake... Nope. That is not going to happen. Cancer really has happened to me, just like it happened to both of my parents years before. There should be no surprise, but there still is. The really remarkable thing to report this week is that the exhaustion has increased considerably. I am totally weary, and am dizzy much of the time. Right now I am sitting in a really comfortable office chair, in a well-lit office, and all I can think of right now is sleeping some more. I got what should be enough sleep last night, but it doesn't matter. I have no energy whatsoever. Bear in mind that this is in the second week after a chemo treatment, and that in the past, by this point, the energy would be returning. It is not so this time. I have spoken of taking two steps back and one step forward with each chemo treatment, and this is the latest example of this phenomenon. This is as low as I can ever recall being. Next Monday, Ken Miller will drive me to Birmingham for my next chemo treatment, and I expect that I will then get to see what being even lower feels like. I know that what I feel is not the measure of truth. God made me, redeemed me, and sustains me. At this point, He will need to carry me for a while, as I have no strength of my own. As the Lord and I go through life together, I look back and see only one set of footprints – His. He has been carrying me, and I pray that He will continue to do so. As I reach the end of my days, I have come to understand that it is only by His strength and love that we live at all, and that it is by His strength and love that we will be carried Home. Thank you, Lord Jesus! Sept 27, 2006 Monica took me out to lunch yesterday, and along the way she told me that I needed to recheck the spelling from yesterday's blog entry. I had misspelled “caricature” although I had carefully checked the spelling first. I had not found it in my Concise Oxford Dictionary which Monica gave me about ten years ago and so I had checked it on-line, but had not done so correctly. This morning, I Googled for dictionaries, and came across Merriam-Webster OnLine, which provides a great interface for word checking (not just spelling, but definition and usage), and found the correct spelling in short order. There is a moral here, and it is that on-line information is only as good as the source of that information. This is true not only of such trivia as spelling, punctuation, and grammar, but even more so information regarding such important issues as cancer diagnosis and treatment. Occasionally I find a particularly good resource for cancer information, and recently I was referred to the Pancreatic Cancer Action Network. They have a web site full of useful information not only for those diagnosed with pancreatic cancer but also for those who are caregivers and friends. I enjoy cheering people up, especially those who come to visit. Some of them come with such fear and trepidation, not sure what to do or say. I am thankful that they take the time to come at all, because there is a certain amount of loneliness which comes from being home-bound. So as long as they have taken the time to visit, I cheer them up with my very strange sense of humor. Some of them comment that it seems odd to have the patient cheering up the visitors, but that is often what happens. Usually I can stay cheerful, but yesterday was an emotional roller-coaster of epic proportion. The day started out thoroughly “up” but there was a period of time where I cried so hard that my sinuses drained massively. What a mess! I know that the Lord is with me, and I needn't worry, but this was not worry. Rather it was very intense sadness, not for me, but for my beloved Monica. Cancer is a thief, stealing our loved ones in the prime of life. It is shocking to us. I continue to pray for Monica, that the Lord will provide for her, as I head for Home. I love her dearly, and would prefer to spare her this pain, but I cannot. I have no control. I place the entire matter in the Lord's hands. Sept 26, 2006
Last night I slept very well, and I feel particularly good this morning. I am very thankful, of course, and am most appreciative of the good days I receive. With pancreatic adenocarcinoma, I do have to wonder whether a series of good days is significant, or whether it is just a temporary reprieve. In some ways, I live from one meeting with the oncologist to the next. I would like to think that we are winning against this awful beast they call cancer, but there is no way to know in advance what exactly is going to happen. May the Lord glorify Himself through whatever He chooses to do in this situation. I will wait patiently and see what He has done. Sept 25, 2006 For those who are going through cancer and treatment, one of the potential side-effects is a high susceptibility to infection. Certain cancer treatments, including both radiation and chemotherapy, can have adverse effects upon the immune system, which makes it more likely that the patient will be infected. I have started a web page regarding the patient's take on such things, and what might be done to help prevent and treat them. The web page is here. Sunday was wonderful. I really enjoyed my Sunday School class, and the one-on-one interactions with the members of my church. Monica and I have no kin within 500 miles of Guntersville, Alabama, where we have been living for nearly four years. Our Church is our local family now, and we love them dearly. These are the people who will pray with us, help us out when we are in need, celebrate with us when things go well, listen to us when we need someone with whom to talk things through - they are indeed our family, and we are closer to them than we are to 98+% of the blood relatives. I have a sister whom I love dearly, but she lives 2100 miles away in California. I have a daughter who is wonderful, but she lives 700 miles away in Texas. I have members of my Sunday School class who, if I call them, will be here to help in less than ten minutes, and with whom I can share the burdens of my heart. These people will pray with me until the light returns. I am glad to call them my friends and family. As a cancer patient, I am constantly in need of attitude readjustment. I suspect that most cancer patients are this way, also. It is hard to even know what to pray for. On the one hand, I would gladly accept a miracle which would heal me from this nasty cancer, but I do not ask for that. On the other hand, I will be satisfied to serve my Lord while my body dies around me, until I am blessedly taken Home. I have come to the conclusion that whatever happens, I am content as long as I know that the Lord has brought me here, and sustains me through it. So I pray that the Lord will be glorified, and that He will use me however He sees fit. That is sufficient all by itself. Many folks I meet have a hard time with this, because they really only have earth's perspective. For them, if the miracle healing does not occur, then they think that God has failed them. No, this is not right. All of us get called home sooner or later, and it is merely a question of how and when. I have been blessed with a situation which has allowed me to speak with some people about the Lord, people who might not have had this opportunity another way. If the Lord can be glorified through this, then so be it. As was said by Isaiah the prophet, “Here I am! Send me!” (Isaiah 6:8) Sept 24, 2006 Monica commented yesterday that my “quality of life” was quite a bit higher than we had been warned about, during stage IV pancreatic adenocarcinoma. I am very pleased and thankful that this is the case, since I really do not like to hurt. The Lord has been very good to us, and continues to do so. The negatives look like this: I am quite frail; I cannot walk more than about 100 steps without stopping to catch my breath; My pain is controlled only with fairly massive doses of prescription medications; The pain medications cause horrible constipation, which is controlled only with the help of industrial strength laxatives; The duodenal/intestinal ulcers make it painful to eat more than a tiny bit at any one meal; Because of back pain, I cannot lie down at all – in order to sleep I use a recliner which allows me to find some position which is acceptable. I could go on with the list, but my point is clear – there are a lot of things which have gone very wrong, and which continue to get worse. Nevertheless, the positives are more impressive: I have enough strength to continue to work 32 hours per week; I feel good enough to go a few places with Monica – dates are a lot of fun with her; I can still make it to my Sunday School class, to meet and pray with my friends; There is enough strength to continue to do Monica's book keeping for her business; I can continue to enjoy a couple of my interests, including amateur radio, which I have been doing since I was a pre-teen. So as hard as things are, yet I can still do some of the things I enjoy. Truly, the Lord is good to us. This morning I feel pretty good, but the exhaustion has caught up with me. As long as I do not attempt to do anything, I feel OK. If I just sit here, all is well. It makes me feel somehow guilty to not accomplish any more than this. However, I suspect that I will have to settle for just looking good today, as that appears to be all I will achieve. Sept 22, 2006 My energetic week caught up with me last night. I had remarked that I still had a lot of energy, in spite of Monday's chemotherapy infusion, and I kept on working and doing things beyond what I had been able to do before. Well, last night it caught up with me, in splendid fashion. Monica had a Civitan banquet set for the evening (she is president-elect of her chapter) and so she took care of supper early for me. She had stopped at Subway, and bought a club sandwich, something I enjoy, and when she got back I was almost too tired to eat it. So I cut the six inch sandwich in half (The cancer and treatment have seriously affected my appetite - I still can only eat a little bit at a sitting), ate it, and headed off to shower and change before lying down for the evening. I was in the sleeping chair and out for the night before 5 p.m. and slept hard until 6 a.m. this morning. Something tells me that by noon I am going to need a siesta, to make it until evening. Cancer and treatment are exhausting. On Monday they finally took the stitches out from the surgery, to place the port, three weeks ago. The stitches in my chest were not too bad, but the ones in my neck itched fiercely, and I knew better than to touch them. So on Monday I asked the nurse in the infusion area if she could remove the stitches, and she got out the nicely sterilized suture removal kit and took care of it for me. The rest of the scabs are gone now, and this morning I was finally able to very gently shave across that area. Oh, that helped! I finally have my neck back. It is time to celebrate! It was two years ago that I was given three months to live, and I am still here, at least enough to type madly into the computer to make another blog entry. The simple fact is that no one can tell me how much time I have left, but the Lord has allowed me to beat their predictions wonderfully. I treasure each day, and hope to be able to use it to influence others to come to their Savior. This is the day! Now is the acceptable time of salvation! Come while you still can! There will come a time in each person's life when he can no longer live, and no longer choose to follow the Lord. Do it now. Sept 21, 2006 I am so very pleased to be married to Monica. She has been absolutely devoted in her care for me during this awful cancer incident, but then again she has been absolutely devoted in her care for me all the time. We both gave ourselves totally to each other nearly 40 years ago, when we decided that we would marry. We were very young, and had to wait several years before that promise of marriage could come about. It is wonderful to realize, this many years later that, yes indeed, we were made for one another. What we could see off in the future has come to pass, and is more wonderful than anything we could have imagined way back then. Here we are in our fifties, and we still behave like a couple of love-struck teenagers. In fact we were teenagers in love way back then, but our relationship has continued to get better year by year, until now when we are positively thrilled with each other. It was impossible to see back then how wonderful things would get later on. Sure, I am dying of pancreatic adenocarcinoma, but in the midst of troubles, we are very much in love. The Lord has provided us for each other, and we are very thankful. This week has been considerably better than it was predicted to be. So far, during the chemotherapy, it has been the case that the week after the chemotherapy infusion, and most especially the first few days, are absolutely exhausting. This week is considerably better, however. While I am tired, I have been able to work normally, and go beyond that. Last night we went out for dinner – we had a date – and I held up all the way to the end of the evening. I am very thankful for this improvement. For those who have been following the kitchen remodel which has taken three years, we are told that the people from Lowe's will be out today to remeasure to get once again new counter tops to replace the ones they goofed on measuring and installing a month ago. We stopped work in the kitchen, and waited. Monica negotiated with them over what was the right thing to do. Now is the time for the problem to be solved – we hope. The Lord is very good to us. He is Great! Amen and Amen! Sept 19, 2006 Monday went very well. Monica drove us the 75 miles one-way to the Kirklin Clinic in Birmingham, and I got my 90 minute infusion of 1.8 grams of gemcitabine, diluted in about a liter of saline solution (that is “salty water” as Edna the oncology nurse so aptly put it). This time, Monica took her camera setup so that she could photograph the whole process of the infusion. She was very obvious, with this big camera setup – she took the big wedding rig, with the Canon 20D camera and 17-85 mm zoom lens, on a Newton Bracket (allows the camera to rotate under the flash head) and the Canon 580EX flash head with external Quantum Turbo battery pack. We worked at making sure that the photography took place in such a way that no other patient would worry about his/her privacy being violated. We especially wanted to get pictures of how the “port” is used, and that was very successful. I have looked at the raw camera files, and Monica did a great job of getting just the right images. I plan to put together a web page devoted to infusion, to help others contemplating chemotherapy to not worry so much about the process. The blood tests showed that my red blood count is slowly beginning to rise. Two weeks ago the hemoglobin was tested at 10.8 g/dL, and this time is was up to 11.3 g/dL. That is not a huge rise, but it is significant in that it is the first time since the chemotherapy began that it has risen instead of falling. The increase has to be new blood cells, which are more efficient than the old cells in transporting oxygen around the body. Two weeks ago they gave me two doses of erythropoetin in order to increase the red blood cell production. Once again yesterday they gave me two more doses of erythropoetin. So I hope that the increase will continue, and that I will continue to feel better. Amen, Lord Jesus! We came more-or-less straight home, stopping only at the BP gas station with the pretty good little restaurant, on highway 79. We were both hungry, and each got a BLT sandwich, and then shared a strawberry ice cream cone. We have always been able to turn any little event into a date, and this was no exception. When we were in high school, Ed Keefer (the pastoral intern at our little church) noted that we could be perfectly happy sitting together under a streetlight, and he was right. After 35-1/2 years of marriage, we could not be any happier. I am absolutely blessed. Monica reminded me on the way home that I needed to digitize some negatives. This was an important job, involving two youngsters who got married on March 27th, 1971 – us. We have never had a wedding album, and we decided that it was time that we remedy this lack. Our friends Carol and David had digitized the Ektachrome slides, and last night I digitized the two rolls of black-and-white 35mm Tri-x Pan film. Monica will do the photoshop work, removing dust spots and the like, and get the prints made at our usual lab. She has already ordered the album cover, leaves, and such. So, by mid-October we should have our wedding pictures all ready to show. Monica and I have never been happier. We have decided that although the time left may be short, that there is no reason that it not be joyful. So we will live life to the maximum, and savor each moment. Thank you, Monica! You are still my Favorite and my Only Love! Sept 17, 2006 Ah, yes. It is Sunday morning again, and I get the opportunity to be with my church family. I treasure this opportunity, as these are my closest and dearest of friends. I am so very pleased that they represent our Lord and Savior so well, by doing what needs to be done, and doing so joyfully. I look forward to Sunday. My life now follows the two week cycle of the chemotherapy treatments. Every two weeks they infuse me with gemcitabine. That knocks me absolutely flat for a week or more, and then slowly life returns to some sort of normal – i.e. what normal has become anymore. Today I feel pretty good, certainly as good as I have felt in two weeks. It has been nearly two weeks since the last dose of chemo, and so I have had enough time to recover somewhat. That ends tomorrow, when we go back to Kirklin Clinic for the next dose, and the cycle starts over again. Chemotherapy is a hard bargain. With pancreatic cancer, the medical community can promise no definite cure, but only the hope that they can forestall the inevitable death from the cancer by some indeterminate amount of time. In return for that bit of hope, the chemo takes from the patient much of the remaining quality of life, draining him of energy. It is not an easy choice to make. I continue with the treatment in spite of the side effects, because I want to be able to spend more time with Monica the Sweet. My beloved makes it worth it. Sept 16, 2006 <Smile> - <Big Smile> - <Really Big Smile!> Hymn time! The fifth verse of Amazing Grace has the following text: When we've been there ten thousand years, Bright shining as the sun, We've no less days to sing God's praise Than when we'd first begun. People come to visit, and I really appreciate it. Tom Curlee came this week, and it was great. The only difficulty is that he had to leave here in order to go home to Fullerton, and to Karleen the Wonderful. He could not be in both places at once, and had a limited amount of time to stay here. This is the way life works. However, in Heaven, in eternity, this is no longer a problem. Scripture speaks of it as “when time is no more.” What a concept! I look forward to eternity, when nothing need be rushed. On Monday I have an appointment at Kirklin Clinic for yet another chemotherapy infusion. Monica will drive me there this time, and she is planning to bring her big camera. We plan to have her photograph the process of hooking up to the “port” and the various steps required. This will go on a web page, in order to show people who are considering whether or not to have a port placed as part of their cancer treatment just what is involved. There is so little information on this, that it is insufficient to make a truly informed decision as to whether to do this or not. That lack is something that we can at least partially remedy. I will point to the web page once it is up. Just make sure not to look if the sight of blood bothers you. The process is very straightforward, and is much better than placing an IV, but still there are some who would consider the whole matter rather disgusting and gross. Since it has been nearly two weeks since the last chemotherapy treatment, I am beginning to feel pretty good again. Chemotherapy has been exhausting for me, and it would seem that it knocks me down at least two steps each time they infuse more of the gemcitabine into my increasingly frail body. Then, during the next two weeks, I can come up a level, and feel somewhat better. The net result, though, is that I am being knocked down one level net every two weeks, and the cumulative effect is pronounced. Please pray that I can continue to survive the treatment, as it makes life exceedingly difficult. Sept 15, 2006 Tom Curlee, my best friend since high school, has headed off to visit with his dad, in Ashland Alabama. Tom was here from Sunday morning through Thursday evening, and what a blessing his presence has been! We met forty years ago, when we were both students at Fullerton High School, in Fullerton, California. At the time, what drew us together was a common interest in amateur radio; we both got our licenses within months of each other, and have kept at it ever since. There were some additional similarities between us: neither of us were terribly extroverted, both of us were Christians, both of us depended upon bicycles for transportation. Tom introduced me to photographic darkroom work, and we both did photography for the high school newspaper and annuals. We both attended California State Polytechnic University, Pomona, in engineering technology. We both worked for Perkin-Elmer for a while (he recommended me for that job – thanks, Tom!) and we both worked for Hughes Aircraft for a long time (I recommended him for that job). He was the best man at our wedding, and took our wedding photographs. We lived within a couple of miles of each other for many years, until my job ended at Hughes, and Monica and I moved to Alabama so I could work here. We have kept in touch ever since. There are very few really long term friends, when you live 2000+ miles from where you grew up. Tom, however, has been the best of friends, for about as long as I remember. Thanks for the wonderful time with us, Tom! Tom helped us with a whole lot of very practical projects, and kept us hopping. I got about three weeks of exercise in five days, and am beginning to slowly recover from the exertion. Among all of the hard work, we had the opportunity to talk a whole lot, and shared both the high and low points. Tom and I have always been able to openly discuss anything at all, and by our age, find it helpful to share those things which are burdens for us. You cannot go through life without having at least some regrets – things that, given the opportunity, you might have done differently. As we approach 60 years of age, there has been enough time pass to see how things we did years ago have worked out. Some things worked well, and others give pause to consider how we might have done things differently, if we had only known then what we know now. These are cause for prayer. Tom and I have renewed our commitments to pray for each other, and specificaly for the big concerns which occupy so much of our attention. We have time left to change some things, and to do some things, and to conform ourselves more and more to the image of our Dear Lord. Yesterday is gone. It is fixed and cannot be changed. Tomorrow we can plan for a bit, but we will not really know about tomorrow unless and until it arrives. We have only today in which we can live, and be what we should be. Let's do our best to make today all it can be. One of the hardest things in life is to let go of the past. To a large extent, we are the products of all that went before. Our experiences have shaped us into what we are today, and it is only with the greatest of effort that we can change from what our pasts have shaped us to be into something better. The Lord has provided the opportunity to change into His likeness, and we really ought to pursue that, and to do so today. Today is the only chance we have to be all that we can and ought to be. Let's do it. Sept 13, 2006 Yesterday was the funeral for my good friend, Tom Sachs. He had been fighting cancer for several years, and it finally killed off his body. We gave him a thoroughly Christian send off, and the sanctuary at First Baptist Church was pretty well packed. So Tom has been Promoted to Glory. We will miss him here, but we shall see him again. We do indeed have a most blessed hope. I continue to be thankful that the fine folks at Aegis Technologies Group continue to allow me to telecommute, so that I may do engineering work for them, and at the same time may keep being paid and keep having health insurance. To be dying of cancer is challenge enough, without the added potential issues of being unemployed and uninsured. Beyond that, it is very helpful to have a major distraction in my life, some focus outside of myself to put my energies into, and to keep me distracted from my problems. So, to Bill, Steve, and the fine folks at Aegis, Thank You! This week has been so busy that, while I am exhausted by it all, yet so much progress has been made at getting things done that I feel pretty good. I can at least smile at the changes taking place outside of me. As for what is going on inside of me, that I cannot judge without another visit to Kirklin Clinic for another CT scan, and a visit to Dr. Posey, the oncologist. The next visit is scheduled for another month from now – and cannot be moved up since Blue Cross Blue Shield of Alabama will only pay for CT scans more than 60 days apart. I cannot rely on feelings to know what the tumors are doing, so the tests are necessary. The pressure in my peritoneal area is continuing to grow. I suspect that the tumors in there are pushing things around and squeezing them, and that I can feel the results. According to the doctors, this is the most dangerous cancerous thing growing in me right this minute. If it succeeds in further squeezing the inferior vena cava or renal vein sufficiently to significantly reduce blood flow, my body is in deep trouble. The last CT scan already indicated that this process has begun. Unless the tumor growth can be stopped, this is the most likely next big event. During the night I prayed for a lot of friends by name. Friends, please keep praying for Monica and me. It means more to us that people pray for us than almost anything they could do. Sept 12, 2006 Yesterday was very busy, with Tom helping with various tasks which have been beyond my ability. I really appreciate all of the help, as it has eased my anxiety about completing several seemingly impossible things. Beyond that, we get to talk quite a bit, and attempt to help each other through our respective situations. Thanks for coming, Tom! One thing Tom mentioned was that, several years ago, in dealing with the estate of an elderly relative, they had come across a small book which was entitled, “Thing I Will Never Forgive.” It was filled with carefully hand-written lists of fairly trivial affronts from others, which apparently so occupied the mind of this person that she felt it important that none of them every be forgotten. Wow! I had never thought of taking an unforgiving spirit to that level, but I can see how someone might get there. I suspect that a lot of us have mental lists of such things, which we occasionally rehearse to make sure they stay good and fresh. I recall that in Monica's family, that small things which happened decades before were regularly brought up and thrown in people's faces, to let them know that they were most certainly not forgiven, and never would be. How terribly painful that was! As I approach my end, I am more and more convinced that this is one book which should be burned, and the ashes scattered in such a way that nothing will ever be able to be reconstructed. Our Savior has paid the price and redeemed us from all of our sin, and forgives us everything. We absolutely must follow His example and forgive others. Yes, it is the right thing to do, but beyond that, it is a blessing in two ways: First, it frees our minds to replace that awful recollection with the wonderful fruit of the spirit, including peace and patience; Second, it paves a path for reconciliation with our neighbors, whoever they may be. In both ways, it makes life ever so much more pleasant, both for us, and also for those around us. Just Do It! I am increasingly dizzy now. For a couple of months, I have felt pretty good in the morning, but by early afternoon all of the symptoms seemed to worsen considerably. The mornings are not as good as they were, and by early afternoon exhaustion sets in. Between the progression of the tumors, and the adverse side effects of the chemotherapy, life is getting much more difficult to live. The Lord provided me another day, and I am thankful. I rejoice at being able to serve Him more. However, I can see a decline week-by-week, and it is progressing in such a way that I can see, barring a miracle, that I am going Home soon. I am satisfied with this, as I look forward to my future in Heaven throughout all eternity. I must say, though, that daily life is getting very difficult. Sept 11, 2006 It would seem that over the weekend several people have come, and everyone who came, helped. The most recent to arrive is my best friend from high school, Tom Curlee. He flew in from Fullerton, California, and is spending the week in Alabama, split between seeing us here and seeing his dad who lives in Ashland, Alabama. He announced his intention to help however he could, and is proving to be amazingly capable at practical matters. Yesterday, he installed two new sets of aluminum blinds in the upstairs den, and then after a trip to the hardware store, changed out five duplex outlets and a switch, and all of the cover plates. After all of that, the three of us headed out to dinner. We talked the whole time. What fun! One of the things I am enjoying about getting my house in order to the ability to give away some things to people who find the items useful. Rather than holding everything until the end, I am giving gifts while I am alive. This way, I can attempt to match the gift with the recipient, to make it so that the things I give are given to people who will use and enjoy them. This is a whole lot more fun that leaving everything for a gigantic estate sale after I am gone. One of the recipients came by yesterday, and asked how I felt about this. I told him that, really, it feels good. I learned yesterday that my good friend Tom Sachs has gone home to be with his Lord. I mentioned him in the August 25th entry. He had been fighting cancer for several years, as have I, and had been in seriously declining health for the last few weeks. We will miss Tom, but we know that we will see him again. That is one of the most encouraging parts of being a Christian. We know that we do not need to have a final goodbye. Rather, as we are gathered home, we will be with each other for eternity. Truly, what a great reward we have in store. Things are going exceptionally well. On the other hand, the exhaustion from the chemotherapy is nearly overwhelming right now. Because of my low red blood cell count, I am basically running around hypoxic all the time. There is insufficient oxygen being transported about in my system to support any level of activity. I have become used to being permanently dizzy, but it is not a great way to be able to accomplish much. I will sit here in my nice, comfortable chair and attempt to do engineering design work today, knowing the whole time that I had better check and recheck my work to make sure I do not make many errors. At least I have been allowed the opportunity to continue today. The Lord gave me another day! Hooray! Sept 10, 2006 Yesterday was exhausting, but productive and interesting. My cousin Connie showed up, accompanied by husband John and son John David. They flew in from Greenville, South Carolina, only instead of taking the commercial flights into either Birmingham or Huntsville, they rented a Piper Arrow and flew directly to Guntersville's Joe Starnes Field. John said that it cut the 5-1/2 hour drive to a 1-1/2 hour flight. We were so very glad to see them. While they were here, they helped with finishing the upstairs den, the room with the big chair in which I have been sleeping. All three of them are of the “dive in and get it done” persuasion, and so they accomplished great things in a matter of about five hours – some things which had eluded us up to that point. So the upstairs den is very nearly finished. This is a very good thing indeed. I was privileged to be able to talk with Connie for a couple of hours. She brought me up to speed on a bunch of family matters, plus we were able to reminisce a bit about growing up in a very close extended family, more than fifty years ago. We also dealt with the matter of how to handle my impending passing. This is not a particularly easy thing to discuss, but it is necessary to achieve some sense of closure. I really do want to have done everything possible to complete what was started, and to finish well. Yesterday also, a friend came over and took with him three server computers and a bunch of related computer hardware. I am finally about to the point where there will be no excess equipment to be in Monica's way. I have either sold or given away about a dozen computers, systems which I was using either as production hardware or learning tools for our businesses. Monica will not need these, and so the best time to dispose of them is right now. It is the right thing to do whatever else happens. Assuming I go home to be with the Lord, I certainly will not need them here. On the other hand, if I should be healed of this cancer, I still will not need this excess baggage, and see no probability of acquiring more of this stuff later. Its time has passed, and the stage IV cancer has provided a reason to deal with it all right now. I have been asked by several people why I do not allow feedback on my blog. Well, in watching other blogs and forums, I have seen that there is rather a lot of spam, hucksterism, and negativeness. I do not feel like providing a forum for the get-rich-quick charlatans who would attempt to sell their miracle cures for any disease, real or imaginary. I do not want to be responsible for having to constantly delete the overwhelming levels of spam to which such blogs and forums are subjected. And furthermore, I do not have the energy to deal with the nasty comments of those folks who do not approve of something I said. So there will be no feedback. Those who know me will know my email address already. Some folks who do not know me have nevertheless figured out how to reach me successfully. To anyone else with positive things to say, but who does not fit in one of those two categories, I apologize in advance for not being perfectly available, but I am afraid that I have to be a bit self-protective to be able to blog at all at this energy level. The last week has brought with it what feels like about a two-step-down change. It would seem that the further the chemotherapy treatment progresses, the lower my energy level will be. This is related to the continuing drop in my red blood cell count, and the resulting reduction in the oxygen carrying ability of my bloodstream. Whatever else is true, it would seem that I am destined to get even more tired than I already am. Ugh. I hope that the bi-weekly double dose of erythropoetin will increase the red blood cell count and thus reduce this side effect. I hope. The Lord has been very good to me. I am so very pleased to be His. As little as I enjoy the business of my body dying around me, yet I look forward with anticipation to finally getting to see my Lord and Savior. I would like to get back to singing, and I expect that to be one thing which will continue in Heaven. May I please sing in the tenor section? There are some friends who have gone home before me, who also sang tenor, and I would like to sing with them again. Sept 9, 2006 This is turning out to be a hard time. Today we have several visitors, very welcome guests, and I will most certainly enjoy their company. However, I have so little energy today, that I am at a loss as to how to handle this. The combination of the cancer and the chemotherapy has left me worn out, and this is but the start of the day. I would say that I am going through a bit of testing. Yesterday, I was asked to turn the wireless network on, and in the process I clumsily knocked one of my pieces of test equipment off of a seven foot high shelf, and broke it. When I tried to fix it, I only made things worse, and so now it is permanently dead. My reaction was to simply whimper that it broke, and proceed on. But then last night was more awful. By about 4:30 p.m. I could barely move. I almost went to lie down without my supper, but Monica and Marie made sure I ate something, and had my evening pills. So I washed up, and headed for the sleeping chair, and was sleeping hard by about 5:30. Monica and Marie headed out to get supper and to buy a few things, and while they were gone, the phone kept ringing and ringing. Normally, our business phone is set to forward to Monica's cell phone, so it will give a short ring and then stop ringing. Well, it would appear that the forwarding was turned off yesterday to allow an incoming fax call, and did not get set back on before they left. I had forgotten how brutally annoying a bell type phone is, insistent that its message be honored above anything and everything else in life. So whoever was calling was getting no answer, and letting it ring fifteen or twenty times, and doing it over and over every ten minutes in order to reach Monica. I finally got up in a stupor, and answered the phone. What I heard was a chipper voice asking how I was... and so I honestly answered that I was busy dying of cancer, very slowly, and that I was sorry to not be real sociable, but I had been awakened by that call, and that if he would just not call back for five minutes, that I would see about putting the phone back on forward, so that he would get Monica next time he called. Now comes the nasty part. It took multiple attempts to get the phone back on forwarding, because I was too sick to dial fast enough for the evil telephone company's machine to accept the forwarding order. It took several attempts, and by then I was thoroughly awake, and about as furious as I have ever been. I alternately screamed and cried for the next half hour. I looked and found that the bell phone in the hallway was turned with the bell on maximum loudness, in spite of the fact that we never answer the accursed things. To make things worse, I called Monica as part of the forwarding process (remember, for BellSouth forwarding to work, you have to call the person to whom the call is forwarded, and they have to answer, or the stupid forwarding will not take.) and then I worried that I had insulted my Beloved Monica, and had to call again to apologize. It took another hour to cry myself back to sleep. Do you see what I mean about being tested? So, prayer partners, would you please pray more for me today, tomorrow, and from here on out? This dying process is problematic, at best, and I am facing emotional issues the likes of which I have never seen before. Sept 8, 2006 Surprise! At lunch, while I was eating my micro meal, the door opened and my daughter Marie stepped in. Now bear in mind that she lives in Plano, Texas, and I live in Guntersville, Alabama, and you can imagine the surprise. Monica was in on the surprise, and no one gave the secret away. So I have been speechless for a while. It is great to have a daughter who loves her daddy. So many people have been showing up recently that I have to wonder if they know (or suspect) something that I do not. Yes, I am a real sicko – stage IV Pancreatic Cancer qualifies highly on the “You know you are really sick if...” scale. I am very glad to see Marie, and Connie, and John, and Tom this weekend. But what is the significance of all of them being here all at once? Monica and I have been going through the planning for such necessities as her financial matters after I am gone, and how to dispose of the “stuff” that I have, and which she has no need of. I have been holding “pre-estate sales” of electronic, computer, shooting, and musical equipment. Much of the “stuff” is gone, and it continues to go at a pretty good pace. Furthermore, I am making lists of people to whom to entrust the matters of retrieving some of the value from some items which will remain until after I am gone. On the one hand, this is really contrarian to so much of our culture. As a culture, we accumulate things, and seem driven to do so. Disposing of it while I am still alive seems somehow “unamerican.” Nevertheless, it is the right thing to do. I am content that, from all I can see, even if I were to be miraculously healed of this dread disease, that there would be no reason to reaccumulate all of this stuff. It is gone, with absolutely no regrets. The Lord has granted me peace concerning my passing. I am in pain, and the pain seems to increase constantly. But that too shall cease very soon, and I shall go to be with the One whom I have loved for so many years. Here or in Heaven, I am His, and all is well. Sept 7, 2006 What would I do without faithful friends? Yesterday, Richard Moebes spent his day driving me to and from Birmingham for my chemotherapy infusion. He patiently waited the hours it took to wait for the blood tests to start, wait for the results, and wait some more for them to pump the fine gemcitabine into me. Then after the infusion, we stopped at The Fish Market (highly recommended) for lunch, and he grabbed the check and wouldn't let me pay. He listened patiently the whole time, and offered advice only when I directly asked for it. Wow. What would I do without such Christian friends? I pray that the Lord blesses each and every one of these fine folks who have been of such great help to me as I approach my end. Yesterday afternoon, by the time we returned from Birmingham, I was so tired that all I could do was collapse in the sleeping chair. I slept like a rock for a couple of hours, and then got up to take care of some chores. By dinner time I was totally spent. I felt too tired to eat supper, but Monica convinced me to eat a bit of fresh fruit. So then I washed up and crashed before 7 p.m. My bedtime has been earlier than any self-respecting eight year old. This exhaustion is the single most obvious side effect of the cancer and chemo treatment. I can feel great at 5 a.m., and just know that I should be able to do lots. It doesn't last very long, though, on most days. As I understand it, this is the result of the ever lower red blood cell count, which is caused by the action of the chemo drugs. My Cousin Connie called and said she is planning a day visit on Saturday. She is the first of the Martin cousins of my generation (actually, she and her twin sister share firstness) and we have always gotten along well. Then by Saturday evening my best friend from high school, Tom Curlee, is scheduled to fly in from California. He plans to stay a few days, which will be a great treat. I would love to see these fine people under better circumstances, but right now, I will take what I can get! I wake up in the middle of the night, and am often awake for an hour or more. It is wonderfully quiet, and a great time to pray. I am finding more and more that the Lord is granting me great peace through these prayer times. I pray for the folks I know, by name, and the Lord hears me. I am looking forward to meeting Jesus. Of all of the benefits of passing on, this has got to be the best one. Whatever Heaven is like, I am certain that I will like it, because my friend Jesus is there. He has been so good to me here in this troubled world, and I am certain that it will be better by far in that perfect place. Amen, Lord Jesus! Sept 6, 2006 Now I understand what the trouble of installing the port is worth. Today I went for a chemotherapy infusion, the first one since I had the port installed. Instead of searching for yet another vein to destroy with an IV, the nurse cleaned the area around the port with an iodine solution, cooled it with a shot of ethyl chloride, and then punched through the skin into the port with a specialty needle. I barely felt it at all. First she used it to draw blood for a blood test, and then after most of an hour, she used the already hooked up port to pump in the gemcitabine over an hour and a half. Then she unhooked the port, put a bandaid over the port, and sent me home. This was ever so much easier than having the ritual stabbing of the hands in order to get a new IV to take, sometimes doing it over and over repeatedly in new spots in order to get one spot to work. So, the port is there to make it more likely that I will show up for my chemo appointments. Yes, and it works, too. My advice: If you have to go through chemotherapy, get a port installed up-front. My only regret is waiting until the second chemo round to do so. The blood tests showed a markedly reduced hemoglobin level. I have attached the blood test report here. This concerned the nurse, who asked if I had been tired recently. Oh yeah, have I ever been tired! OK, so in order to help improve the situation, she gave me two shots of erythropoetin, which is supposed to boost the production of red blood cells. I hope this works, as I hardly have enough energy today to make it back to the other building to go lie down. Chemo has been a total energy drain for me. I have noticed that the out-of-state friends and relations are starting to fly/drive in to see me one last time. They do not come out and say that, of course, but the reality is that they and I know that this is the one last chance where they are reasonably assured of seeing me before I get Promoted to Glory. I am honestly honored that they come all this way. I wish I could be a better host for them, but about all I can do is smile when they arrive. By the way, the fact that you are reading this means that the new web hosting arrangement works. No longer will I be hosting all of the sites on a local apache web server in a Sun workstation in our outbuilding. This eases my mind considerably, as this way someone else is taking care of the web server, so that Monica will not have to try to fix the impossible when it breaks. Life is good! The Lord is so very good to me. Thank you, Jesus! Sept 4, 2006 I woke up this morning very happy to be alive. The Lord has given me another day. I get another day with my Beloved Monica – she is always a treat. I get another day to be with people, to laugh, sing, and smile. I get another day to do things which need to be done, and I have always enjoyed getting things done. There is no reason to borrow trouble. Tomorrow will arrive without my worrying about it today. Enjoy today while it is still called today. Part of today was taken up with doing more “getting my house in order.” This time it relates to the server computers, which have run in our rear building for several years. We have a business which relies on computers, and up until now I have been building servers and configuring them. It has worked very well, and I have learned a lot in the process. However, since my departure is not that far off, it is time for me to do what I can to make those servers unnecessary, so that Monica will not have to deal with them if they break. They will break, at some point. That has been no problem for me to deal with, but when I am gone, I won't be able to fix them. So today I arranged for web servers and file storage off-site, and have been doing the necessary configuration to allow all of this to be contracted out, rather than done in-house. In fact, it turns out that it will probably cost less to do this anyway, because there are cost-effective service vendors, and because the cost of electricity to run the servers we run is substantial. It is a good enough trade off that if I should suddenly be miraculously healed, I would happily leave the work outsourced. Life is good. Sept 3, 2006 I keep waiting for the next shoe to drop. What do I mean by that? Well, at this point in the progression of the cancer I feel good enough some days that I might be convinced that the worst is over. And yet, each and every time I go for a new round of blood tests and a CT scan, the diagnosis gets worse. Since February, the CA19-9 blood marker has increased monotonically, without fail. The peritoneal cavity soft tissue tumors continue to grow unabated. As of the most recent CT scan, there are definite signs of bone cancer involvement. Nothing is improving, and yet so far I do not feel all that bad – except when I get up to do anything that is. So what I mean by waiting for the other shoe to drop is that I am fearing that the symptoms take a turn for the worse, in some obvious way. Considering that the tumors are putting increasing major pressure on a couple of major blood vessels (inferior vena cava, and renal vein) I may not have to wait very long, either. The other big risk is that the cancer will metastasize further, with other organ involvement. Somehow I do not expect this period of relative stability of symptoms to last. On Wednesday, I am scheduled to return for my sixth dose of gemcitabine. It is not fun at all, but I am grateful that I do not have to take any of the really nasty chemotherapy drugs. Gemcitabine seems primarily to drain all of the energy from me, for more than a week after it is infused. The exhaustion has grown week by week, until now I am really tired much of the time. Nevertheless, I am still capable of working 32 hours per week, and doing most of my necessary chores. Some days I am up at 6 a.m. and crash before 7 p.m. I may take an hour nap after lunch, and even so, seldom am I able to stay up past 8 p.m. Even when I am awake, I am frequently dizzy, and cannot walk very far without stopping to rest. I attribute this mostly to the chemotherapy. They say that chemo reduces the red blood cell count significantly, and that would reduce the flow of oxygen through my system. Even so, for being as sick as I am, I feel remarkable good... for now. On Tuesday I need to call and ask when I can have the stitches out from having the port installed. I had not noticed the thin plastic stitches until the swelling went down a bit, and now they are really obvious. If it can be scheduled for the same day as a chemo infusion, it would save a 150 mile round trip. One thing I am working on, to make life easier for Monica, is a pre-estate sale. There are a fair number of things about which I know much, and about which Monica knows not so very much, and for which she has no real need. It is time for me to reduce the amount of “stuff” with which she will have to deal upon my demise. So I am preparing a new round of things to sell off, whether through direct contacts, newspaper ads, or using eBay. It improves the cash flow, and at the same time reduces the amount of “clutter.” So this is a no-loss proposition. Even if I were to suddenly be healed of this disgusting disease, life would be easier for both of us with this stuff gone. So be it! Sept 2, 2006 The Lord has been very good to me. Today, there is little else to say. I am looking forward to tomorrow's Sunday School class. I always enjoy being with my fellow class members. My daughter Marie has noted that this particular group of people does a better job of putting shoe leather to their faith than any group she has ever seen. Coming from Marie, that is high praise. I have to agree. On Wednesday, Richard from this class will be driving me the 150 miles round trip for my chemotherapy infusion. I can no longer drive, and he is willing to sacrifice his day to get me there. As wonderful as this is, he is by no means unique. All of them are willing to help. Truly, they are behaving as Jesus would, and I am so glad they do. Sept 1, 2006 For those who are going through cancer with or after me, I have posted a page with some pictures to show that the scarring from the operations has been minimal. These images were taken within 48 hours of having the port placed, and I hope that it is reassuring to anyone contemplating a port for chemotherapy treatment that it is as minimally invasive as this. If you are squeamish, you might not want to follow this link. The page is here: http://diehlmartin.com/scars.html If you have even wondered why medical care is so very expensive, I would like to propose an answer. One major reason care is so expensive is because it is so successful. I have stage IV pancreatic adenocarcinoma, and because of the great care I have received, I am still alive to need more care. Thirty years ago, my paternal grandfather was diagnosed with cancer just like mine, and he was gone with a matter of weeks. There really was not much they could do for him, so they sent him home with strong pain killers, and he was home in Heaven rather quickly. Thirty years later, I am facing the same cancer, but two years after the diagnosis I am still battling on, supported by the finest medical teams available. Dying is less expensive than repeatedly beating death back, and so my living is running up the cost of medical care. Multiply me by the millions of cancer patients, and pretty soon we are into spending real money. Health care is more expensive at least partly because we are successfully using it to extend our lives. Each one of us can have many expensive near-death experiences. But quite frankly, would we have it any other way? I will leave you with this moral question: Just because you can save my life repeatedly, and at great expense, does that mean that you must do so? The answer is left as an exercise for the student. Yesterday morning, I was amazed at feeling as good as I did, the day after out-patient surgery. I felt as good as I had all month. But by noon or so, I was marching through molasses. The day's supply of energy was already spent. Ah, this is part of the process now. The chemotherapy saps all of the excess energy from my body, and so while I am smiling, I really can't hear you. I can now fall asleep with my eyes open, sitting up, and looking perfectly normal. But for a while each morning, I really do feel pretty good. My cancer is hurting our business. We have noticed that there are some local folks who are worried that they should avoid using Monica's photography business because they might bother her. The fact that I have cancer is adversely affecting her business, because people are trying to be nice to Monica. How can I put this? The best thing you can do for Monica is to get her to make your portrait, or do your big photo project, and do it today. Photography is how we make our living. Bring those grandchildren in while they're still small. Get your Christmas card photos done before the big rush. Monica will be glad to do all of your photography. It helps keep her mind off of my troubles. Aug 31, 2006 I think I succeeded in washing all of the green dye off. What green dye? Well, it would seem that, at UAB Hospital, the area they prep for surgery they scrub with something which has a green dye added, so that they can be confident of where they have prepped. I heard them discussing it between themselves yesterday. So, sure enough, I had this green stain all the way from mid-chest to my neck, and arm-to-arm. It took a bit of work with washcloth and soapy water, but it all came off after the third pass of scrubbing. Somehow, I think that I look a bit healthier without the green glow. Yesterday, during my hour in the anesthesia recovery room, I decided to be memorable, and so I sang through my recovery. This time I chose not to make up silly songs, but rather worked my way through several Broadway show tunes. I may have been groggy, and was probably not entirely up to par in the matter of diction or staying in tune, but I did make it through several songs, including “Sit Down, You're Rockin' the Boat” from the 1950 musical and 1955 movie “Guys and Dolls.” The next time I see these folks, if that should happen, the odds are that they will remember me. For some time we have been told that, for anyone who lives in Alabama, if you get really sick the best thing to do is to go to the Kirklin Clinic, and the University of Alabama, Birmingham Hospital. This is a best case scenario of “Your tax dollars at work.” What I saw of the operating room yesterday, in the new North Pavilion facility, was a high-tech wonder, staffed with top-notch staff from all over the world. This is part of their new interventional radiology facility, where they have every sort of imaging tool in use so that they can see what they are doing inside the patient in real-time, being guided to exactly the right places, minimizing the old trial-and-error methods. Considering that they were placing a catheter in my jugular vein, but working through a tiny hole in my neck, I really like for them to have had the best tools available to see exactly what they were doing. They simultaneously were using both x-ray and ultrasound imaging, so that they could aim precisely without having to make a big incision. How much more can I get done before I die? There are still projects on my list, of things which I would like to accomplish, if I possibly can. On the one hand, I am frequently dizzy, cannot walk but a short distance, and require constant assistance to do whatever I do. And yet, I might be able to do more, if I put my mind to it. I do not have an answer to this question, but I am not satisfied to simply rest here. I am reminded of my Great Grandmother, Grace Weissert, who at age 95 told me, “You know, Marty, when I am sitting here in this chair, I do not feel one bit different than the day I turned 16. It is only when I go to get up that it is a problem.” I know just how she felt. I would still like to do more, but my body just won't do what it is told any more. Aug 30, 2006 Today, Monica drove me down to UAB Hospital in Birmingham again, and a second attempt was made to install a port, to make it easier to do the chemotherapy which will be a regular part of my life as long as I am alive and fighting pancreatic adenocarcinoma. The previous attempt to install a port, last Monday, failed (under mild sedation) and this time they used general anesthesia instead. For the most part it went off without a hitch. The port is installed, and I feel so ever much better this many hours later than I did last week with the supposedly milder sedation. Go figure. I have decided that nurses should be given better training on the placement of IVs. Some of them are pretty good at it, and basically find the vein, aim at it from outside the body, and spear it all in one direct motion. The pain is real, but it is quick and effective. There is another group of nurses who do what today's nurse did, which is to break the skin with the needle, and then go chasing the vein under the skin, repeatedly poking things until it usually doesn't work, and they go do it again on another site. I had one of these “diggers” today, and she took approximately seven minutes of poking and stabbing (Owie, owie, OWIE!) before giving up and handing the job to another nurse who did it right in about 15 seconds. The first nurse was very personable, and apologized profusely, but she really needs a class in how to do this right. Tuesday was my body's revenge upon me for eating a little bit more than I usually do. My usual meals are tiny, and I had been eating probably 20% more than usual for two or three days. Two good friends, Loretta and Susan, had brought over wonderful meals, and I got a little carried away with the good taste and aroma. Be that as it may, by about 10 a.m. on Tuesday the gastric pain reached epic proportions, and I knew big trouble was brewing. By noon, things had to pass, and they did, in very serious fashion. It took until about 8 p.m. until things returned to normal. One of the really horrid side effects of opiate pain-killers is that they cause massive constipation. The polyethylene glycol 3350 eases that, but things are still glacially slow. The moral of the story is for me to eat very little at a time, even if I love the food. Violate the rule at extreme peril. When I signed on at my current employer, I signed up for insurance for which I was eilgible. Since I was going through chemotherapy for cancer at that time, I was ineligible for several of the coverages, such as cancer insurance and short term disability insurance. Well, today I got company email from the HR department, touting the new short term disability insurance carrier, which had the following sentence, “All employees who enroll in the Voluntary Income Protection Plan during this initial enrollment period will be automatically approved with no waiting periods and no medical questions.” Well, amen to that! I had the application back within the hour. For a dying man, this is a real opportunity. I expect to work for as long as I can continue to do so, but this means that there will be less worry at the end. Prayer has been especially rewarding recently. The Lord has been granting me very serious peace concerning what I am going through, which is most welcome. Even though my body is progressively failing, I know my Lord hears me and is with me as I go through this mess. I look back and see but one set of footprints – His. Thank you, Lord Jesus! Aug 28, 2006 I'm alive. Yes, I'm still alive! For other folks, that might be taken for granted, but for me, this is a Really Big Deal. I thank the Lord every morning that I wake up. And when I wake up in Heaven, I will thank Him for that even more. This has been an extremely emotional weekend. Friday night, Monica went out for the evening with Carol and David, who had helped us in painting the upstairs den. I hurt too badly to go with them, and so I stayed home. The house was much too quiet, and so I called one of my best friends in the whole world, Dave Hoag, and we discussed it all. He is one of the few people to whom I can tell the whole, unvarnished, unprettified business and not worry that it will be taken wrongly. I needed to talk, and he heard me out to the end of it. Thanks, Dave. You have no idea how much I need you as a friend right now. I am finally at peace regarding the upcoming surgery on Wednesday. Last week I was not at peace at all, but the Lord has granted me peace about this surgery now. Thank you, Lord. One side effect of pancreatic cancer is having much too much contact with the medical community. There are many fine people who work very hard in medicine, and I appreciate and respect that. However, in order to keep their own sanity, they have to not become too involved with the emotional needs of their patients. As a result, my contacts with the medical community are frequently very efficient for them, but end up seeming cold and distant. Now realize that they are probing, and poking and cutting on my body, and there is an involuntary negative emotional reaction to that coldness and distance. It is inevitable. For me this is a matter of life and death. For them, it is a job to do. I ask anyone I deal with at the hospital, “How long have you worked here?” and “Do you like your job?” in order to break the ice a bit. I would like to be a person to them, and not just patient number 37 for the morning, and so I try to relate to everyone I meet. I am the crazy guy who makes up silly songs and sings them on the spot, right there at the appointment window or phlebotomist's cubicle at the hospital. They see me coming now, and grin. “Aren't you going to sing to me today, Mr. Martin?” It's working. August 25, 2006 Yesterday we had a friend report from a visit to Tom Sachs, who is under hospice care for another variety of cancer. I was told that when Tom was asked about leaving this earth, he said simply, “I'm looking forward to it.” Just like me, he longs for Home. I live in Guntersville, Alabama, but I long for my Heavenly Home. I made the comment some time ago that moving to Guntersville was moving home for me, even though I had not lived here before. How much more will the believer know that he is at home, when he reaches that Heavenly shore. I am standing at the gate, waiting for my ride. Yes, I am looking forward to it. Aug 24, 2006 Pain hurts. From the bottom of my rib cage down to nearly my knees, everything is very sore. It is time to take my next dose of serious pain medication, take a hot shower, and collapse into the sleeping chair. At least when I can sleep I am less aware of the pain. This past Monday's un-surgery has been re-scheduled for Wednesday, August 30th, at 6:30 a.m. This time they plan on using a general anesthetic, in order to overcome my cannot-be-still fidget factor. It is still planned as day-surgery. I am not thrilled, but those who have been through chemo, and have had a port, have said it was definitely worth it. So I plan to go through with the surgery to have the port installed. Please pray about this – I am not at all at ease about this surgery. Many helpful friends have been by recently to take care of practical matters. Derek, Lee, Amber, and Martin came by last night unexpectedly, and put more of the trim on the kitchen cabinets. Aaron came by this morning to mow the lawn and run the weed-eater. I am not the sort to easily accept help, but it has come to the point where I recognize that many things will go undone unless I accept the loving help of these, some of my best friends. One of the hardest parts of being desperately sick is not being able to do many things for myself. It is hard to lose one's independence in this way. Nevertheless, I am very grateful for all of these wonderful people who have made semi-normal life possible. After the fifth chemotherapy treatment in this sequence, the energy level continues to drop. As I understand it, as long as I am on chemo, the production of red blood cells is greatly diminished or stopped altogether. This means that there are fewer red blood cells running around carrying oxygen, week by week, and it leaves me feeling dizzy all the time. Two flights of stairs are enough to leave me panting for breath for the next five-to-ten minutes. The Lord is good to me. I am still here, and am happy to be here. I have a wonderful wife, who amply demonstrates her love for me. I have a great daughter, who calls frequently, since she lives a many-hours-drive away, in Plano, Texas. I have great friends, a wonderful church and Sunday school class. It is enough to help me see that, although I am declining daily, that I have been totally provided for. For this I am very thankful. Aug 23, 2006 I see no reason to be this tired. The combination of the chemotherapy and the Monday not-quite-surgery with the attendant drugs has left me so very flat, that I can barely move. Last night I was too tired to eat supper, so I took a shower and went straight to sleep. I was out by 6 p.m. and did not get up until nearly 7 a.m. So I got more than 12 hours of sleep. But now, by 1 p.m., I could really use a siesta. Any get-up-and-go has gotten up and gone already. Monica spoke with Jill (Dr. Posey's nurse) yesterday, and they are working on getting me an appointment for a return visit with the surgeons to get that port installed, next week. This time, they expect to use a general anesthetic, which will eliminate the problem of my constant fidget-factor. I cannot hold still, because doing so quickly hurts. They will have to knock me out completely to get me to stop moving. It will still be outpatient day-surgery, but the wake-up will be even slower. Even though my life is slowly running out, I cannot slow down. My wonderful friends are continuing to help me with the three-year kitchen remodeling, I continue to work on ham radio projects, and due to the kindness of my employer (Aegis Technologies Group) I still work 32 hours per week doing electrical engineering work, as a telecommuter. I would go to the office, but it is illegal for me to drive, because of the pain medication. There are Church and Sunday School activities. Oh yes, and I am still doing the books for my Beloved Monica's photography business. So although I am dying, there is little time to worry about it. That is by design – why worry, since it doesn't help in the slightest? Now, what was I saying above about not knowing why I am so tired? “I have my responsibilities, you know!” Aug 22, 2006 (Amended 8/22/06 - DM) Yesterday's medical adventure was, if anything, the strangest yet in a series of strange events at Kirklin Clinic / UAB Hospital, In Birmingham, Alabama. Monday was scheduled to be my fifth chemotherapy treatment, and in addition, I was scheduled to have a “port” installed, a device which would theoretically make continued chemotherapy treatments easier to do. Monica and I arrived bright and early at the sixth floor of North Tower, and checked in. After the paperwork preliminaries, we were taken back to an evaluation room with one fancy gurney and lots of computers, and asked lots of medically related questions. The nurse hooked up an IV to the back of my right hand, and did such a splendid job of it that I never even knew I had been stuck. Wow! I didn't know that was even possible. Then we got to meet Dr. Gupta, who was scheduled to surgically place the port. I asked how many of these operations he did per year, and he indicated that he probably had done two a day on average. So this must be a well-understood procedure. When the doctors and staff do that much of anything, they should know rather well everything to expect, and how to deal with most all of it. Soon, I was wheeled off to the operating room, and transferred from the gurney onto the operating table. This is obviously a specialty item, as it is cantalevered in such a way that the head end is suspended for the last several feet, with no visible means of support. It appears to work with the x-ray machine next to it, so that the radiologist can get a clear view of the top third of the patient without any restriction. The operating table has a most unusual pad on the top, which appears to be filled with a viscous fluid, and which avoids any pressure points, The setup is most impressive. Because of the horrible back pain issues I have had over the last six months, I mentioned to the staff that I feared the inevitable pain of being stretched out fully, and so they let me keep my knees up during the preparation period. I asked them what drugs they would be using on me this time, and first on the list was Versed, which is intended to relieve anxiety, with the strange side effect of impairing short term memory. This is the same thing they used on me during the endoscope treatments in April. Next, they hooked up the IV to their drug administration “stack” and soon I was... The next thing I am aware of is being in a recovery room with Monica. I wasn't feeling much of anything, but when I gently patted my upper chest to feel for the bandage where the port went, it wasn't there. It turns out that they had not installed the port after all. I was told that I moved my right hand at the wrong time, apparently to scratch my nose, and contaminated everything, and that was the end of the operation. It had been halted right then and there to avoid the risk of infection. The only information we have concerning what happened is third-hand. Dr. Gupta never came back and told us anything. Unlike virtually every other surgeon (etc.) we have dealt with, neither he nor anyone else involved directly in the operation came and told either of us anything. Monica is appalled. I can accept that explanation, but really it stretches credulity to the breaking point. Because of the side effects of the Versed (total amnesia during the drugged period), I cannot remember anything that happened. It is a total blank. But the explanation I was given really is inadequate. Assuming that they do indeed do hundreds of these operations per year, it would make sense to me (a medical layman) that it would be well-known that partially sedated patients might do nearly anything, and that a Velcro strap or two, cleverly rigged to keep the hands from moving, would seem to be an eminently reasonable precaution. I cannot be the first patient ever to attempt scratching one's nose. I remember that during my PET scan, that they Velcroed my entire body into a restraint to make me hold still to get better, clearer images. Perhaps I just couldn't hold still enough in general. I don't know. But I do get the feeling that there is something I am not being told. Later today we will call Jill (Dr. Posey's nurse) and try to determine where we ought to proceed from here. There was some talk of attempting a port installation again, this time under a general anesthetic instead of the strange sedation they attempted last time. I really don't know. I am not sure I want to proceed with the installation of the port at all. Aug 17, 2006 One potential advantage of dying in slow motion, as I am, is that I have the opportunity to put my affairs in order, so much as it is possible. This includes not only the usual legal and financial affairs, but also those other less-obvious obligations which have built up over the years. This week we reached a milestone, in that my project website freeio.org was officially taken over by Steve Rainwater, and now it is running on his web server rather than mine. I had started the freeio.org web site as a serious attempt to promote the sharing of electronic hardware design knowledge, and have run it from my own servers for the last six years. I consider it to have been successful, and was disappointed that it would apparently die with me. I was very pleased when Steve offered to take over its care and feeding, and as of this week the transition is complete. Thanks, Steve! Monica and I have been most blessed by the support we have received from the fine folks of our adoptive home town of Guntersville, Alabama. We didn't grow up here, and yet we know that we are totally accepted and loved here. We live 2125 miles from the town where we grew up, but we moved home when we moved to Guntersville. What constitutes a tragedy? A few weeks back I was speaking to a retired preacher, and he referred to my slowly dying of cancer as a tragedy. I was taken aback by that characterization, because while what I am going through is painful and disgusting, yet by no means do I consider this to be a tragedy. What is the worst case scenario – that my body quits and I get to go to my heavenly home to live with Jesus? That is no tragedy at all! The tragedy would be if I fell away from Him. Everyone faces this one day, and it just so happens that this is apparently my time to go. I rejoice that the outcome is already certain, in spite of not knowing the specific hour or the day. I live in anticipation of finally seeing my Lord and Savior. I see no tragedy here whatsoever. Aug 15, 2006 What is Heaven like? Well, I don't know much about it, and the Bible doesn't go into much detail, but it would seem that I will soon find out. As I understand it, my friend Jesus will be there, and runs the place, so I figure that is good enough for me. I know Him well, and in fact was adopted as His brother. So, the way I figure it, Heaven should be just fine. Last night was dreadful. I took a very hot shower and fell asleep early, and forgot to take my pain medication before I went to bed. Bad move! Between the lack of pain medication and coming off of yesterday's dose of morphine (see yesterday's post) I am as sick and hurting as I believe I have ever been. I can barely move. Either today will get better, or it won't. I am hoping it will get much better, and soon. I am experiencing total body failure. That is all it is. There is no personal moral component as far as I can see. As I understand it, pancreatic cancer is largely hereditary. My paternal grandfather died of pancreatic cancer (Pampa Martin, for those who may have known him) and so it runs in the family. Mom died of complications of lung cancer, and Dad died of esophegeal cancer. So my going this way is nothing new, I guess. But it is an inherited body failure, and not the result of some moral failing. What is odd is that like everyone else, I had come to rely on my body to do what it was told. Other than the occasional bout with flu, I was eternally healthy. So it is a shock to have something go this far wrong. Pain hurts. I hurt. But I am not the first, nor will I be the last to experience this. As long as I get to see Jesus when this is over, I have no real reason to complain. - * - * - * - Bluegrass time! For those who may not know, I am very much into bluegrass music, and most especially bluegrass gospel music. This bluegrass song pretty much sums up my feelings at the moment: I'm waiting at the gate looking for my ride, Soon to take me to my home on high. Angel bands a coming from the other side. I don't want to be late, I'm waiting at the gate. I can hear the thunder the time's at hand, Joybells are ringing in the promised land. Jesus is a coming my soul to take. Yes my Lord sees me waiting at the gate. I'm a' leaving the world, no more to do, All of my work on earth is through. I've fought the fight I've kept the faith. Well I'm ready to go, I'm waiting at the gate. - Paul Brewster as sung by Ricky Skaggs & Kentucky Thunder Aug 14, 2006 Today the Lord granted me another day. I am pleased to wake up in the morning, and be able to get up and serve Him. If He is happy, I am happy. So be it. Today was largely spent at Kirklin Clinic, In Birmingham, Alabama. Monica and I left the house at about 5:30 a.m. for the long drive, and arrived at about 7:30 a.m. So we made it there on time. First, there was a blood test, and then an injection of morphine to help control the pain I would feel being supine for the CT scan. Next came the CT scan, and then after a while, we got to see Dr. Posey, the oncologist. After that, we stopped for lunch, and drove back to Guntersville, arriving at about 3:30 p.m. Things went reasonably quickly, as compared to some other days. The news from the blood test and the CT scan was, once again, not pleasant. The CA19-9 blood marker continues to rise (up ten points this time to 76) which would seem to indicate that the tumor activity is continuing to increase. Furthermore, the CT scan showed some tumor progression, and that the tumor is putting increasing compression on the inferior vena cava and the renal vein. These have life-threatening potential all their own. Also, for the first time, the CT scan showed a specific sclerotic lesion. This is the first time that metastatic bone involvement has been detected by the CT scan. The lymph nodes in this peritoneal area are considerably enlarged, as well. I did not ask the doctor to give me a positive time scale progression, and where I am on it, because this is as much a matter of statistics as anything else. He doesn't know how my particular case will work out, and we all know that. Having said that, the need for continuing treatment to slow the growth of the tumors is very important. As long I continue to tolerate it, he intends to keep me on Gemcitabine-based chemotherapy. He also mentioned the possibility of high-dose radiation aimed at those specific lymph nodes, to see if it will not reduce the back pain. Because of the course of radiation I had in 2003-2004, he indicated that more radiation in the same area may not be allowable. Because of the fact that chemotherapy will continue, on Monday August 21st I will go in very early in the morning for an out-patient surgery, to have the surgeons install a “port.” See here and here for more information concerning what a port is, and where it is installed. The port will eliminate most of the horridness involved in hooking up IVs and drawing blood. As long as the chemotherapy is planned to continue indefinitely, the installation of a port makes good sense. What is the significance of all of this? Although the doctor does not dwell on the negatives, this is definitely a downhill course. Nowhere do I hear any words concerning a possible cure or remission. The treatments are strictly to give a bit more time, and perhaps a bit more livability during what time I have left. So I will go forth and live the remaining bit of life as “me” and do it with all of the joy I can stand. I have been so very blessed. Now is the time to end well. Aug 9, 2006 I am more than ready for this round of chemotherapy to be over. They say that the whole purpose of chemo is to poison a person badly enough to kill off the cancer, without quite killing the person who has the cancer. Well, this round reached its fourth application this week, and it is nearly killing me. The energy level is very nearly zero. Everything aches. Urine is running nearly brown, regardless how much liquid I drink. The phlegm is heavy, and just will not come up. Last night I took a very hot shower and went to bed at about 7 p.m., and thought I was going to freeze to death. My Beloved Monica covered me up with blankets, and rubbed my feet, and all I could do was whimper. It may be doing exactly what they say it should, but I do not like gemcitabine one bit. I am more than ready for this round of chemotherapy to be over. Friends drop by unannounced, and I am amazed at them. “You look so good!” they will say, as if a 55 year old male looking undead is somehow remarkable. While I am thankful for friends, and especialy those who take the time to stop by and see me, yet I am so very tired that I am afraid I am not the best host under the circumstances. They ask, “So, how are you feeling?” and then shut up and wait for me to tell them all about it. I came right out and asked one fine fellow on Sunday whether he expected me somehow to cheer him up. I love these friends, and enjoy seeing them. It would probably be a really good idea to call before coming, however, as sometimes I am here in body only. My daughter Marie was here over the weekend, and helped me with a few construction tasks. She and I think alike, and it is thus easy to work with her, as we sort of anticipate each other's moves. She helped me tunnel an armored power cable (BX) from one 1st floor room to another 2nd floor room, along with two coaxial cables for my ham radio equipment. She also helped me put up another 2 meter ham radio antenna on the roof. Many thanks to Marie, who is not only helpful, but also great fun to be around. What would I do without Monica the Wonderful? We have been married for 35 years, and every year the love gets sweeter. She stands by me through this disgusting illness, and smiles when everything is going wrong, and I really need that smile. I married the former Miss Monica Marie Nelson on March 27th, 1971, after four years of dating. We were in the same church youth group, and in the same high school, and shared some classes. She continues to get better, year by year. Three cheers for the pretty lady with the naturally curly nose! What a thrill it is to still be married to her after all of these years. July 28, 2006 Dr Wilson, my gastroenterologist, provided me a copy of the latest CT scan report, and it is an eye-opener. I scanned it into a pdf file, and it is available here: ctscan.pdf. Dr. Posey, the oncologist, keeps as much information to himself as he possibly can, and so I found it amazing to see the words used in the report. The last sentence says it all: "Impression: 1. Slight further progression of infiltrative retroperitoneal soft tissue, consistent with progressive recurrent pancreatic adenocarcinoma." From what I read on-line (like here for instance) the one year survival rate is about 18%, with treatment such as I am receiving. It would seem that the treatment is considered primarily pallitative, rather than curative. Dr. Wilson was kind enough to make sure that we are taking care of the necessary tasks to put my affairs in order. We have much of that accomplished, although it would seem that there is still more to do. I think it is time to do a bit of "Promotion-to-Glory Celebration" planning. July 25, 2006 How can a 90 minute chemotherapy infusion take all day? Yesterday I was scheduled to go back to Kirklin Clinic, in Birmingham, Alabama, for my bi-weekly dose of gemcitabine. The infusion consists of putting in an IV, and pumping in 1.8 Grams of gemcitabine, diluted in about half a liter of saline solution, over 90 minutes time. That shouldn't take but a couple of hours maximum, right? A good fiend and fellow Sunday School class member picked me up at our business/home location at 9 a.m. sharp, for the trip to Birmingham. The trip was very uneventful, with little traffic until we went through Tarrant, near where Highway 79 intersects Interstate 20. Even the State Trooper was kind, by merely flashing his blue lights briefly to get us to slow down a bit. So we made it to the Kirklin Clinic parking garage at about 10:35 a.m. My driver dropped me off there, and went to visit with a friend, while I went on in to the Oncology/Hematology Department for my treatment. The first stop was the lab, to get them to draw some blood. There is a blood test each time, to make sure that my blood count is high enough to allow them to give the the treatment. When I got there, the nice ladies at the desk could not find my lab order, so I proceeded to the Infusion check-in desk, where I checked in. They provided a copy of the lab paperwork, and I headed back there. The phlebotomist did a fine job, and drew the blood painlessly, letting me leave in less than two minutes. So far, so good. It was now 10:50 a.m., and my infusion appointment was at 11:30. So I sat down with four magazines to read, in the big waiting room. There were a number of interesting conversations going on (usually having to do with cancer and its treatment) so I participated in those as it seemed appropriate. I made it all the way through the first magazine, the most recent issue of Fine Homebuilding, and time passed. By 12:30 I was well into my second magazine, and the crowd in the waiting room had changed, but I had not yet been called. At about 1:15 p.m., my name was called, and so I went to the infusion room door, but the nice lady informed me that there had been a problem. My blood sample had been lost. It had fallen out of the tray, got lost under the centrifuge machine, and they had just now found it. So it would be a while longer while they ran the blood tests. At about 1:45, they called again, and sat me down in one of the big gray recliners in the infusion room. First there were the questions about any symptoms I might have. I always wonder how to answer these questions, because the cancer itself has so many symptoms, and the medications add their own additional set of side effects. So I answered my best, and then waited some more. A while later, the technician introduced herself, and began the ritual sticking of the hands. After this many treatments and hospital stays, my veins are pretty well used, up, and are hard as rock. So to complicate matters, it always seems to take multiple attempts to get an IV to stay in and flow. The first technician tried three places, once on the back of my left hand, and then twice on the back of my right hand, before passing the job onto another technician. The second lady succeeded quickly in getting an IV going in my right hand, and then all progress stopped. I sat there for about 25 minutes, waiting. This always happens, and yet it always surprises me. It would appear that until they get an IV working, they do not order the drugs from the on-site pharmacy. So after a considerable delay, the first technician returns with a big syringe full of an anti-nausea drug, and slowly injects that into my system. After another while, she returns with the diluted gemcitabine, and another large bag with more saline solution, and sets the pump to pump the gemcitabine in over about 100 minutes. OK, now there is nothing to do but wait, and wait I do. It is rather cold in this lab. I understand why they keep it cold – it helps make it less likely that patients will feel sick to their stomachs, but it is nevertheless cold enough to be really bothersome. Twice I ask for a blanket, twice I am told one is coming, and none arrives. They are busy, I can see that, that does not warm me up any. I continue to read, until I doze off a bit. I have brought along a wool watch cap, and have spread my sweater over my top as best I can to conserve heat. Time crawls. In this room there are about eighteen of us, all waiting for the pumps to pump, and the fine poison to be injected. Time crawls even more. By the time my pump ran out of gemcitabine mix to pump, half of the crew had gone off on break, and so the pump beeped and beeped for nearly ten minutes. The supervisor finally came over and shut off the alarm, but left me hooked up. After another ten minutes, the first technician reappeared, pulled off the tape, pulled out the IV, put a piece of gauze and some tape on the injection site, and I was free to leave. The clock showed the time to be 4:20 p.m. Then I had to find my ride, and she drove me through rush-hour traffic back from Birmingham, to Guntersville. So by the time I got home, it was 6:30 p.m. So, for a nominal 90 minute infusion, it required nine and a half hours of clock time. In the process I missed my mid-day meal and meds (I had thought I would certainly be out of the infusion by 1:45 p.m., and that would be a good time to stop, eat, and take the meds, but that obviously was not the case). About every other time I go down to Kirkln Clinic, the day goes weird like this. I call it “Medical Standard Time.” Things happen when they happen, and cannot by any means be predicted or rushed. Sigh... July 22, 2006 It is interesting to sit here, detached from the whole process, and watch the cancer take over my body. Dr. Posey (the oncologist) calls is “pancreatic cancer” and since that is where it all started, I guess he is right. He doesn't say much, though, and it is hard to accurately gauge what he suspects will happen next. The doctoral silence is, in itself, a bit unsettling. I Google for what answers there are, and find that perhaps one reason he doesn't say much is that the on-line descriptions show that what I have is Stage IV pancreatic cancer, where it has spread into the peritoneal cavity, and spine, among other places. The pancreas is not involved right now. Maybe the previous round of radiation and chemo took care of that. Nevertheless, he calls it pancreatic cancer, since that is where it all started. The gemcitabine may be helping for all I know, but from here, inside my own body, it is hard to tell. The pressure in my abdomen continues to increase, and the pain sometimes is sufficient to stop me entirely. There is pain medication I take all the time, and then there is a second level of pain medication which I take for “break-through pain.” It doesn't matter much, though. The pain is there, and keeps accelerating. It slows me down quite a bit, now. The medical professionals would prescribe more potent pain medication if I asked, but I am afraid of it. I want to keep what mental ability I still have, and the current set of pain medications are hard enough to deal with in that regard. My expectation now is that I will almost certainly not make it until the new year. It is hard to tell how long I still have, but since the cancer is already well-spread and is progressing noticeably, I have to think that there is not long left. I have three friends right now who are in the same position. Tom Sachs in now being treated by hospice care, and Sam and Louise Chandler are both still taking big rounds of chemo. It hurts as badly to see them hurt as it does to hurt myself. They have fought this beast bravely, and now it is winning. Well, cancer's victory is in vain, because we all have a Certain Hope, and fully expect to see each other in Heaven shortly. Being a Christian is a good thing – we know the future is better, even as we suffer here. He is faithful, so we need not worry about our future. My beloved Monica stands by me and is a tower of strength in my presence. I know this hurts her, and that she cannot let on, so that she can help me through this. May the Lord bless her mightily. She is wonderful. We have gone through all of the planning that one can. The will is up to date, all of the important documents have been located, and the regular and medical power of attorney documents are all properly signed. I am reminded of II Kings 20:1, where Hezekiah, the king of Judah, is told by the prophet Isaiah, “Thus says the Lord, 'Set your house in order, for you shall die and not live.'” I have a small and uncertain amount of time with which to get things in order, and this I will do. I will not do as Hezekiah, who asked for a longer life, only to have it granted and then to squander it consorting with evil Ahab and Jezebel. What the Lord has decided is the right thing, and I most willingly accept it. It is interesting to consider that the mortality rate in the United States is exactly 100%. It could even be said in jest that we have spread this terrible plague all over the world, since now the worldwide mortality rate is just as high as ours is. So what is my point? It is this: we know that our time here on Earth is limited, and we must accomplish whatever we choose to do within that limited time period. There is no going back, and there is no avoiding this reality. So make the most of what time you have, since your time will also come. I know I will. “I have my responsibilities, you know!” July 18, 2006 IV chemo treatments began on June 26th – 1.8 grams of Gemsar diluted in saline solution, pumped in over 90 minutes' time. The schedule is for every two weeks, so it happened again on July 10th. The infusion lab is a cold place (quite literally, it must be near or below 60 F all the time) with a dozen recliners. The technician sits me down, hooks up the IV, waits for the pharmacy to deliver the Gemsar, and then hooks up the pump, with the flow rate computed to deliver the fine poison at the proper rate to take 90 minutes. I sleep if I can, since there is nothing better to do, although it is not easy with the indoctrination video tape going loudly in the background (“If you have other symptoms, call your nurse or doctor...”) The Gemsar stings a bit, and this last time the technician diluted it a bit further with more saline solution, which helped. The pharmacy bags of liquid come straight out of the refrigerator, and the liquid feels like ice in my veins. There are few new symptoms that I can attribute to the chemo. The most obvious symptom is that the gastric disturbance got worse. After the Whipple procedure, while taking major pain medication, the intestines are already slowed to a crawl. (Opiates greatly slow smooth muscle function, and so with the opiates comes constipation). To solve that Dr. Wilson, the GI Doctor, has me on 17 grams of Glycolax (Polytehylene Glycol 3350) twice a day. It helps a bit, and gets the motility somewhere above zero. Add in the Gemsar, and it slows down things even more. The doctors urge me to stop losing weight, but it is very hard when nothing moves to make room for more food. The pain is increasing and spreading. I spoke with Jill (Dr. Posey's nurse) on July 10th, and she asked if now that I was on chemo the pain were decreasing, and I told her that if anything the pain is accelerating. She seemed surprised, and offered more drugs to combat the pain. I am riding a fine line here, in that I am taking major pain medication, but only enough to keep the pain sort of at bay, so that I can remain lucid throughout the treatment. During my stay at UAB hospital in October of 2004, they drugged me to the level that I could not think or talk normally, and I had to ask them to turn it way down. I do not like pain at all, but I choose to medicate it minimally so that I can still be in my right mind. So I am taking three different types of pain medication, each with its own issues: Celebrex, 200mg, once a day, an anti-inflammatory which is controversial because it can cause heart problems; Oxycodone, 20mg, three times a day, an opiate which is terribly addictive; and Darvocet, 650mg, as required for breakthrough pain. I do not like any of them. They all are bad stuff. But it is hard to get to the terminal phase of life where the pain is so bad at times that I really do not care to live any further, and to end up relying on the medication to make it possible to even consider continuing with the other treatment. So why do I continue my treatment? I continue because my wife and my friends do not want me to leave, and would prefer that I stick around as long as I can. For them I will do this. Life is with people, and my life is not just my own. “I have my responsibilities, you know!” Jun 22, 2006 I spoke with Dr. Posey (the oncologist) on June 20th. I was told that no one CT scan was clear as to what had happened, but that looking at the series of them from the last several months shows that the major part of a tumor is growing in front of the left psoas muscle, but extends all the way across to the other side. Furthermore, the bone scan showed what at first was diagnosed as degeneration in the L4 and L5/S1 area of the spine, but which is being regarded as potentially also cancerous. I asked him if there was a specific name for this, and he said that it is still pancreatic cancer. The treatment with gemcitabine will begin on June 26th, on a bi-weekly basis. Dr. Posey stated that he hopes to arrest or slow the growth. If he is hopeful about this, he most certainly did not show it. What I am about to say may offend some readers. As a convinced Christian, I refuse to worry about this matter. I am dealing with a potentially fatal body failure, but that is all it is. It is not as if it were something serious, like a moral failing. I trust that the future will be better, though I am passing through some difficult times on the way. Jun 19, 2006 I was notified by the oncologist's office on Friday that the cancer is back. Dr. Posey will be calling me this week to schedule the next round of chemo (gemcitabine). This spring has been a hard and painful time. In February, I noticed symptoms that something had changed. There was low level back pain, and abdominal pain after eating. It took very little food to make it feel terribly bloated, and it hurt for hours thereafter. Dr Vickers thought that it was a sign of chronic pancreatitis, and hospitalized me for a week while they diagnosed it, and then removed a stent from my pancreas. It didn't help. Things just kept getting worse. The CA19-9 marker was increasing every time it was measured. Although the numbers were not terribly high, Dr. Vickers (the gastroenterologist) referred me back to Dr. Posey (the oncologist). His thought was that the back pain was not caused by a back issue, but rather was pancreatic pain. They put me through several CT scans through the spring, and there was a bit of change between them, but nothing really obvious. In the last few weeks, things got more interesting. Dr. Vickers notified us (by mail) that he is leaving UAB hospital and will not be seeing us any more. Neither was there any referral to anyone else. This is not easy to deal with. As about his last act. Dr. Vickers got me approved (by BCBS) for a PET scan. The PET scan was not particularly helpful. In the first place, it hurt terribly, because by now the back pain is so bad that I cannot lie down at all without great stabbing pain. Being strapped down to the table for 40 minutes was just awful. But then the results were strange, too. The only unusual uptake detected by the the PET scan was in the psoas muscles. That made sense only in that because of the terrible pain, I may have been flexing that muscle during the test. So Dr. Posey scheduled me for yet another CT scan. About this time, I had a regular appointment with Dr Winter Wilson (my local gastroenterologist). I explained the whole sequence to him, and since UAB had not sent him a single result of any test or anything else in more than a year (in spite of having authorized and requested it repeatedly) he was working mostly in the dark. After my description of the back pain, he scheduled a bone scan, saying that while it wasn't his specialty, the results could potentially tell us some things concerning whether this was a back issue or not. The bone scan was not difficult (other than having to lie perfectly still on my back again) and the results were fascinating. No other diagnostic had been very helpful, but there on the screen the technician pointed to a very bright object on the screen: The L4 and L5 vertebrae glowed four times as brightly as anything else on the screen. She said, "That's where it hurts, isn't it?" She was right, of course. But since she is a technician and not a doctor, that was all she could say. So now all of the doctors have all of the recent test results. No one is being particularly forthcoming with understandable words, beyond that they are recommending more rounds of chemo. Seeing that bone scan leads me to believe that what I was seeing is a sign of metastasis. It would seem that no longer am I dealing with self contained cholangiocarcinoma, but rather that it is spreading aggressively. It has taken four months from first reporting the changes to seeing something which can be seen and measured with the instrumentation. It also looks to me that this may have been four months too many. This is a painful process. I recall that this is exactly how my mother died 25 years ago. The initial cancer was treatable, but was the wedge which allowed in the several kinds of cancer which followed, and which finally took her life, after more than a year of fighting it. She died after a year of medical torture. And now I am looking at the same probable sequence of events. It makes me wonder what is the best course of treatemnt to follow. Dr. Wilson warned me almost two years ago that I should take control of my treatment, and make the decisions as to what outcomes are acceptable. I have choices to make. I see the end approaching quickly, but I will not go passively. May2, 2006 The results from the PET/CT scan were inconclusive. They saw nothing unusual, which I take as an indication that the continuing pain is due to what has been done in the past, and not due to a new malignancy. Dr. Vickers stated that he does not know the cause of the pain. It appears to be a not uncommon side effect of pancreatic cancer treatment. At our last appointment, he suggested that a celiac block might be appropriate, so that the pain pathway would be closed, and I might not have to take the continuous pain medication which I am taking now. In the meantime, he prescribed a more potent set of pain-killers which has made it possible to sleep through the night. The next appointment with Dr. Vickers at Kirklin Clinic (Birmingham, AL) is Monday May 8th. One issue is that the pain medication makes it illegal to drive. It was pointed out to me that if I were caught with this in my system, it would result in a felony charge. While this is inconvenient, it was enough to convince my employer to allow me to work from home. Apr 24, 2006 The past month or two have been ones of increasing pain. Even after the pancreatic duct stent was removed, there was only momentary relief, and now it is as painful as ever. So now they have decided to look a bit farther and see what else may have gone wrong. On Tuesday April 25, 2006, I am scheduled for a combined PET/CT scan at Kirklin Clinic in Birmingham, Alabama. Unlike what was done at the beginning of April, this is a much more wide-ranging test, and should be able to localize anything which has an unusual metabolic rate, such as tumors. The PET/CT scan is an expensive test, and required pre-approval from Blue-Cross Blue-Shield of Alabama, and that was a strange process. It turns out that they have outsourced such approvals to an outfit in New York, which only seems to communicate by snail mail. So ten days were lost to an intentionally slow process. At this pain level, I am singularly unimpressed. I have one more thought. While I was hospitalized at UAB Hospital at the beginning of April, a good friend was on the same floor, after the same diagnosis and surgery. She had been there for seven weeks continuously with one complication after another, and while I was there, she died. Of the four people I know who have had this in the last three years, I am the only one left alive. I fully intend to stay that way, although the statistics do not seem terribly encouraging. Apr 11, 2006 During February, I developed some new symptoms, including constant abdominal and back pain, which became much worse after eating. Dr. Vickers diagnosed the problem as pancreatitis, involving what was left of the pancreas after the Whipple Procedure. At UAB Hospital, Dr. Wilcox removed a stent which had been inserted into the pancreatic duct, which seemed to be irritating the pancreas. That involved eight days of hospitalization, as first there were lots of tests, and then it took two trys using an ERCP to grab onto the stent and pull it out. The stent they removed looks like a piece of 100 pound test fishing line, about three inches long. It apparently is hollow. One end looked like fresh plastic, and the other end looked like it had been chemically attacked. The pain is somewhat lower now, but pancreatitis does not just go away quickly. This is apparenty just one more thing to look out for after a Whipple Procedure surgery. Feb 24, 2006 My six month checkup was a good one - Dr. Vickers and Dr. Posey said nothing has changed, and that I do not have to come back for six months. That is a good thing, since with the blood work and CT scans, each checkup costs about $3600. There is however continued gastric distress. This has become the new "normal" condition. I finally figured out that I could reduce the pain level by avoiding coffee, tea, and all carbonated beverages. That was nowhere suggested by any of the doctors, but it does make sense, especially since the diet soda products tend to be acidic. Dr. Wilson already put me on Protonix to reduce the production of stomach acid, in order to see if the intestinal ulcers will heal. The energy level is sufficient to get back to remodelling the kitchen - a project which was delayed a year and a half by the cancer incident. So I am alive and happy about it. The little problems I can deal with. Jan 11, 2006 Life is good. I am getting some energy back after being extremely tired ever since completing the treatments. There is continuing gastric distress, and at the beginning of December they performed an EGD (esophogastroduodenoscopy - i.e. they used a fiberoptic snake down my throat to take a look) and found that I have developed intestinal ulcers. Apparently after the Whipple procedure there is no valving for bile or stomach acid, and so the upper small intestines get a constant flow of that. That explains the continued pain. They are treating that with protonics, which basically eliminates the production of stomach acid, which has its own side-effects. I cannot take that indefinitely, either, since protonics is carcinogenic over the long term. There is one other side-effect which bears mentioning. After the radiation and chemotherapy, there is a depression of the immune system, and there have been recurring bouts with skin fungus (tinea corporis). The body simply does not work the way it used to. So beware of all infections and get them dealt with immediately. But on the other hand I am able to commute an hour each way to/from an engineering job, and am still around to talk about it. I can sing in the church choir, teach Sunday school, do remodelling at home - I cannot do as much at a time, but it all is doable. So there is life after cholangiocarcinoma, surgery, radiation treatment, and chemotherapy, although life is a bit different than it was. Jul 19, 2005 Yesterday was the big day: Once again we headed down to the Kirklin Clinic in Birmingham, Alabama, for the post cancer checkup. First there were the blood tests, then the ct scan with contrast, then the two visits with Dr. Vickers and Dr. Posey. The verdict was that they see no sign of cancer now, and I don't have to go back until January. This is very good indeed. After the Whipple procedure October 21, 2004, after the combined radiation and chemo during December, January, and February, and after the rounds of chemo (1650 mg twice a day of Xeloda - Ugh!) which ended in May, life is returning to normal, and I am feeling again like I did before this whole medical event. Last week I had a routine visit with the family GP who did the initial diagnosis, and he basically said that when I came in presenting painless jaundice, his initial thought was that I had three months left to live. All of the paperwork still says pancreatic cancer, which is called a silent killer for very good reasons. Yet because of great treatment, performed early enough, I am still here and normal life is returning. There is a moral to this: if the doctor suspects cancer, get a referral to the best cancer center available. Just do it, and do it right away. Please do not put it off. Mar 23, 2005 I cannot speak for anyone else on this matter, but my case the treatment progressed so quickly that there was not much time for anything dietary except for making sure I had a few weeks of protein and vitamin supplements in preparation for the surgery. The first treatment was an ERCP, where they put this instrument down my throat, through the stomach, and into the small intestine, and then worked their way somehow into the common bile duct where they popped it open and placed a stent to keep it open, so that the bile would stop backing up. They did biopsy work from there, and found nothing cancerous at that time, although Dr. Wilson stated that he had never seen one of these that was not cancerous. The next treatment was with an ultrasound ERCP, inserted the same way, where they did further investigation, took more biopsy samples, and found nothing cancerous. The third treatment was the Whipple procedure, where they removed the gall bladder, the head of the pancreas, about a foot of small intestine, part of the stomach, and every lymph node they could reach. When the pathologist looked at what was removed, he found that the tumor was cancerous, and that it was just beginning to spread, but that they thought they got it all out with the Whipple procedure. I have a friend who also was treated for cholangiocarcinoma, and she had an easier case. They were able to determine that it was benign, and removed it through endoscopic surgery. So not all cases are as complicated as mine. My advice is to seek treatment quickly. I have been told that this can be an extremely aggressive form of cancer, and that left untreated it can develop into pancreatic cancer very quickly. There are several wonderful cancer treatment centers available to you. Get a referral and go. Mar 22, 2005 I thought it a good time to report back. The six weeks, five days a week, of radiation (250MEV photons from a Varian Cliniac 2100) with Xeloda every weekday was exhausting, but the chemo symptoms were not as bad as any of the literature suggested. The predicted hand and foot degeneration only showed up during the last week of treatment, and healed up as would blisters - i.e. split open, peeled, and healed from underneath, during the following month off treatment. There appeared to be no side effects from the radiation treatment itself, beyond the usual loss of hair where they aimed the radiation generator, i.e. on the stomach, sides, and back, where the radiation hit. The machine is rather loud, but I didn't feel a thing while it ran. The second round of Xeloda by itself (14 days straight) is over, and other than exhaustion, there were no visible side effects. I didn't eat as much, not because anything tasted wrong, but rather because I was too tired to care about food. Monday I went back to The Kirklin Clinic (University of Alabama Brimingham Hospital's fabulous facility) for follow up tests, and the CT scan and blood work came out clean. Dr. James Posey stated that they could find no sign of cancer activity. I am scheduled for another round of chemo using Xeloda, and then don't have to go back for another scan and bloodwork until I see both Dr. Posey (the oncologist) and Dr. Selwyn Vickers (the surgeon) until July. So far, so good. I am very thankful! Dec 22, 2004 Each case is different, I suppose. Since I am dealing with CCA, that first abstract is not terribly positive, but then again, single studies are interesting but do not prove a lot. By the way, I was told by Dr. Susan Russo (radiation oncologist) that I am as blessed as one could be in that the CCA was caught so early (T1 tumor, basically self contained in the bile duct, and no evidence of pancreatic involvement - yet) that there were no statistics for survival/remission for my group. It would seem that CCA is seldom caught until at least stage 3. The Whipple procedure removed all of that and a lot more, so there is hope that they got it all, except for the inevitable microscopic particles that no one can be sure of. So radiation and treatment with Xeloda (1650 mg, twice a day) begins on Tuesday December 28th, all at once. I will be interested to see just how this goes. I'll report back once I know more. Dec 20, 2004 In October I was treated at the University of Alabama, Birmingham (UAB) hospital for cholangiocarcinoma (a tumor on the common bile duct where it goes through the pancreas). Dr. Vickers did a Whipple procedure, and the chief pathologist inspected the removed parts, and noted that the tumor was categorized as a T1, and while the pancreas was not yet involved, that there was an attack on one of thirteen removed lymph nodes and also on one nerve bundle. They think that they may have gotten it all. However, there is a significant chance that they didn't. Now that the surgery recovery is mostly done, the plan is to aggressively treat what might remain with a simultaneous combination of radiation and chemo, in this case using Xeloda (capecitabine). In reading the literature, Xeloda is approved for treatment of breast cancer and colon cancer, but nothing else is mentioned. |
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