Cancer

"It May Be Cancer"

Well now, isn't that interesting news !! This statement was not unexpected for me. In fact, I could have told the doctor the same, with a far higher degree of certainty. For several months, I noted symptoms that compounded and by doing so narrowed the probable cause to only one diagnosis - cancer. Bleeding, weight loss (almost 60 pounds), constantly cold, fatigue, no appetite, early satiety and no energy; all of these and a persistent cough, but no pain whatsoever. So then, why wait so long to finally consult a medical person? Was it fear? Certainly; but not of cancer or its well advertised potential for destruction. For me, the fear of getting caught up in the medical quicksand, thereby losing control of my daily life; of having doctors prescribe treatment regimens and clinical studies that entertain them without regard for the consequences to Quality of Life issues for me, the patient. Gastroenterology - Or Your Guess Is As Good As Mine. And so it began. In the clutches of a gastroenterologist who, after fifteen minutes conversation, prescribed a colonoscopy. He reasoned that since I was well past 50, without having had one, it would be useful to get it done. He wanted a chest x-ray, for the cough and a blood test. He received the blood results the next day and called me immediately. His focus was on a high reading for blood glucose and "messed up" liver enzymes, which he claimed not to understand. This gentleman insisted that I drop everything to check into a hospital for "some tests." He could not disclose exactly what tests were needed. Since I had two very important work commitments, coupled with the fact I was already scheduled into the hospital for the colonoscopy two days later, I suggested we do the tests then. The tests never took place. The colonoscopy revealed several cancerous polyps and a large tumor which had grown to size that was about to block the large intestine. That was not good. If a blockage occurred, then only a complete colostomy would be possible. A CT guided biopsy, two days later, showed a cancerous growth in the liver. Surgery, a colon resection or colostomy, was the only option at that point. Four weeks of inaction elapsed as a result of a disagreement over surgeon selection. It seems that the gastro guy recommended a surgeon that our health insurance plan did not fully cover. I asked Dr. Gastro to select from a list of approved surgeons. Though much time was wasted, sanity prevailed. We lucked out with possibly the best surgeon in the US. Surgery - Confidence, Honesty and Genuine Compassion Two days after my appointment with the surgeon, which included the first full examination since all this started, he had me admitted to the hospital. The day of admitting was filled with all sorts of blood tests, CT scans and preparation for surgery. Throughout this, that evening and prior to surgery, our surgeon passed much time with me and with my wife Carolle. He answered all of our questions quite honestly, holding back neither good news nor bad news. He explained all of our options and the associated consequences of those options. The surgeon indicated that this procedure was associated with about 6 or 7 days in the hospital. I told him that I was ready and that I would be back at work in three days. He replied quite simply and knowingly, "okay." Ten days later I returned to work. :-) Despite being off on the following day, our surgeon arrived at 07:30 to further discuss the results from the operation. One of his associates was on-call, but he came in person. He had run though everything with Carolle immediately following surgery. Nevertheless, he opted to meet with us together the next morning as well. The operation apparently lasted almost 5 hours. He successfully removed the tumor and tested for "clear margins". Examining ten adjacent lymph nodes, he found 50% with cancer. An examination of the liver, showed several (initially thought to be four) tumors. He "Staged" the cancer as Stage IV - meaning it had already metastasized to remote organs (liver). In the absence of post operative Chemotherapy, he forecast a 3 to 6 month survival time line. Perhaps not pretty information, but factual, honest and very much appreciated. Chemotherapy - Double, Double, Toil and Trouble; Fire Burn and Cauldron Bubble Chemotherapy appears to be the science of developing highly toxic chemicals for injection into human beings. The hope, of course, is that those toxins will destroy cancer cells at a faster rate than they destroy normal, healthy and life sustaining cells. Oddly, there seems to be little focus towards the general well being of the patient. It is a war between the oncologist and the cancer, played upon Battlefield Me. Once again, luck was with us in the selection of an oncologist and clinic. Our oncologist is known throughout the world. He has led or participated in programs developing new chemotherapy drugs, including Avastin and Oxaliplatin, both of which I use. He is published internationally on diverse cancer and chemotherapy topics. One benefit of his fame is that we get the Avastin and Oxaliplatin free of cost to our health insurance and us. Prior to beginning the Chemo regimen, the oncologist ordered up a full set of bench marks, including CT scans, CBC (Complete Blood Count), CPL (Comprehensive Panel), PT/PTT, cancer markers (CEA & C19-9) and a physical. As may be expected all of these test results were wildly out of range by many orders of magnitude in some cases. The Chemo regimen I follow uses the following drugs: Avastin - intravenous - bi-weekly Oxaliplatin - intravenous - bi-weekly 5FU - 46 hour infusion - bi-weekly (FU = Fluoruracil) 5FU bolus - intravenous - bi-weekly Leucovorin - intravenous - bi-weekly Decadron - intravenous - bi-weekly Aranesp - intravenous - bi-weekly Initially, I took Procrit every week for anemia. Recently we switched to Aranesp with the expectation that it would improve the anemia. Perhaps I should mention that I have a Porta-cath installed just below my right shoulder. This permits only one connection for blood testing, intravenous feeds, infusions and individual injections, as may be required. The largest advantage of the "port" is that I receive my 46 hour infusion of 5FU from an external pump, connected directly to the "port." This ensures a good degree of mobility, with only minor inconvenience. The "port" is a permanent addition, implanted completely below the skin and requires no patient maintenance. The nurses flush it weekly with Saline and Heparin. Everyone needing Chemo should investigate a port-a-cath. So where are we now? Well I have received seven courses of Chemo. My cancer markers have improved slightly, despite receiving the maximum doses. There are twelve (12) tumors in the liver, greater than 25 mm in size. These 12 are the tumor markers we are following. Three CT scans, since beginning Chemo, show the liver to be in a stable metastatic condition. Changes to the various tumors range from 1-3 mm smaller to 3 mm larger. Overall density has not changed. What has changed though is my general well being. This deteriorated significantly while taking Chemo. Mental acuity decreased, feeling in my fingers lessened, my appetite dwindled, tastes and smells changed dramatically. General body functions and systems seemed to slow to sluggish. I slept all the time. My blood results continued to slide. At the time of writing, I have been off Chemo for 5 weeks due to prohibitive blood platelet counts. We are going to try again next week. Chemotherapy - Status and Decisions Anemia continues to be an annoyance. I have been playing that game for more than 5 months. I can't say it is extreme, though of concern to the oncologist. It required me to have weekly blood tests plus a weekly shot of PROCRIT. When that stopped having much effect, I was switched to a bi-weekly shot of ARANESP, though the mandatory weekly blood tests continue (CBC, Comprehensive Panel, PT/PTT, CEA and C19-9). When I can eat, I try to have lots of liver, spinach, tuna, etc. Fortunately, I love all of these "healthy" foods. The net result is that I am still anemic, by several whole digits below the recommended heamoglobin count. Oh well. Then there is the immune system. It remains considerably compromised, due to the chemo I am told. It seems that it improves a bit, then the following week, the numbers drop again. The most recent blood work (CBC) showed the immune system on an up tick, so that is good news. The major concern for the past 7 or 8 weeks though remains my platelet count. It continues to fall; apparently a direct consequence of the chemo killing the newly generated platelet cells. In fact they are now so low, that I have been unable to have any chemo treatments for over 5 weeks. The risk of a low platelet count is one of failure to clot and internal bleeding. If they do not start to bounce back, then a transfusion will be necessary. The CT scans and Ultrasounds show little improvement in the 12 liver tumors. The oncologist and radiation specialist characterize the results as a "stable metastatic scenario." Apparently that means that while some tumor dimensions have shrunk 1 to 3 mm, others have similarly increased. Abdominal cavity fluid is still present; caused by fluid from the liver tumors draining into the abdomen. This is uncomfortable, while accounting for the abdominal bloating. Being off chemo temporarily has the benefit of greatly improving one's "quality of life." No one can comprehend the encompassing impact of chemotherapy on all physical and mental systems. It is like being in hell - I am not kidding. If you can imagine running in very, very deep sand on a very hot day, then apply that to everything you do, including thought, problem solving and interaction with people. Getting off the chemo for an extended period allows all those systems to heal from the onslaught of the poisons that make up a chemotherapy regimen. Slowly things such as mental acuity, appetite, taste, touch and sense of physical well-being return. It makes it exceptionally difficult to even consider returning to chemotherapy, regardless of the consequences of that decision. Clinical studies have shown that various Chemo regimens may extend survivability by 5 or 6 months for Stage IV cancer patients. But what are the survival expectations without Chemo. As often as we read of people dying in just a few months, we also hear of the 15 year survivors. So then, how do you decide on the benefit of continuing or discontinuing Chemo? Chemo isolates you from the world and your loved ones, to a degree that is frightening. This effect grows as surely as any cancer while Chemo continues. The effects of Chemo obviate socializing to any degree. Travel or visiting with your family and friends just does not work well. Do you accept that you will miss those opportunities forever, to gain 5 or 6 months? Do you gamble on a longer term survival without the Chemo, in order to spend quality time with friends and loved ones; to do those things that the responsibilities of life have delayed? How do you know? ...... How do you know?

"It May Be Cancer"

Well now, isn't that interesting news !! This statement was not unexpected for me. In fact, I could have told the doctor the same, with a far higher degree of certainty. For several months, I noted symptoms that compounded and by doing so narrowed the probable cause to only one diagnosis - cancer.

Bleeding, weight loss (almost 60 pounds), constantly cold, fatigue, no appetite, early satiety and no energy; all of these and a persistent cough, but no pain whatsoever.

So then, why wait so long to finally consult a medical person? Was it fear? Certainly; but not of cancer or its well advertised potential for destruction. For me, the fear of getting caught up in the medical quicksand, thereby losing control of my daily life; of having doctors prescribe treatment regimens and clinical studies that entertain them without regard for the consequences to Quality of Life issues for me, the patient.

Gastroenterology - Or Your Guess Is As Good As Mine.

And so it began. In the clutches of a gastroenterologist who, after fifteen minutes conversation, prescribed a colonoscopy. He reasoned that since I was well past 50, without having had one, it would be useful to get it done. He wanted a chest x-ray, for the cough and a blood test. He received the blood results the next day and called me immediately. His focus was on a high reading for blood glucose and "messed up" liver enzymes, which he claimed not to understand.

This gentleman insisted that I drop everything to check into a hospital for "some tests." He could not disclose exactly what tests were needed. Since I had two very important work commitments, coupled with the fact I was already scheduled into the hospital for the colonoscopy two days later, I suggested we do the tests then. The tests never took place.

The colonoscopy revealed several cancerous polyps and a large tumor which had grown to size that was about to block the large intestine. That was not good. If a blockage occurred, then only a complete colostomy would be possible. A CT guided biopsy, two days later, showed a cancerous growth in the liver. Surgery, a colon resection or colostomy, was the only option at that point.

Four weeks of inaction elapsed as a result of a disagreement over surgeon selection. It seems that the gastro guy recommended a surgeon that our health insurance plan did not fully cover. I asked Dr. Gastro to select from a list of approved surgeons. Though much time was wasted, sanity prevailed. We lucked out with possibly the best surgeon in the US.

Surgery - Confidence, Honesty and Genuine Compassion

Two days after my appointment with the surgeon, which included the first full examination since all this started, he had me admitted to the hospital. The day of admitting was filled with all sorts of blood tests, CT scans and preparation for surgery. Throughout this, that evening and prior to surgery, our surgeon passed much time with me and with my wife Carolle. He answered all of our questions quite honestly, holding back neither good news nor bad news. He explained all of our options and the associated consequences of those options.

The surgeon indicated that this procedure was associated with about 6 or 7 days in the hospital. I told him that I was ready and that I would be back at work in three days. He replied quite simply and knowingly, "okay." Ten days later I returned to work. :-)

Despite being off on the following day, our surgeon arrived at 07:30 to further discuss the results from the operation. One of his associates was on-call, but he came in person. He had run though everything with Carolle immediately following surgery. Nevertheless, he opted to meet with us together the next morning as well.

The operation apparently lasted almost 5 hours. He successfully removed the tumor and tested for "clear margins". Examining ten adjacent lymph nodes, he found 50% with cancer. An examination of the liver, showed several (initially thought to be four) tumors. He "Staged" the cancer as Stage IV - meaning it had already metastasized to remote organs (liver). In the absence of post operative Chemotherapy, he forecast a 3 to 6 month survival time line. Perhaps not pretty information, but factual, honest and very much appreciated.

Chemotherapy - Double, Double, Toil and Trouble; Fire Burn and Cauldron Bubble

Chemotherapy appears to be the science of developing highly toxic chemicals for injection into human beings. The hope, of course, is that those toxins will destroy cancer cells at a faster rate than they destroy normal, healthy and life sustaining cells. Oddly, there seems to be little focus towards the general well being of the patient. It is a war between the oncologist and the cancer, played upon Battlefield Me.

Once again, luck was with us in the selection of an oncologist and clinic. Our oncologist is known throughout the world. He has led or participated in programs developing new chemotherapy drugs, including Avastin and Oxaliplatin, both of which I use. He is published internationally on diverse cancer and chemotherapy topics. One benefit of his fame is that we get the Avastin and Oxaliplatin free of cost to our health insurance and us.

Prior to beginning the Chemo regimen, the oncologist ordered up a full set of bench marks, including CT scans, CBC (Complete Blood Count), CPL (Comprehensive Panel), PT/PTT, cancer markers (CEA & C19-9) and a physical. As may be expected all of these test results were wildly out of range by many orders of magnitude in some cases.

The Chemo regimen I follow uses the following drugs:

Avastin - intravenous - bi-weekly
Oxaliplatin - intravenous - bi-weekly
5FU - 46 hour infusion - bi-weekly (FU = Fluoruracil)
5FU bolus - intravenous - bi-weekly
Leucovorin - intravenous - bi-weekly
Decadron - intravenous - bi-weekly
Aranesp - intravenous - bi-weekly

Initially, I took Procrit every week for anemia. Recently we switched to Aranesp with the expectation that it would improve the anemia.

Perhaps I should mention that I have a Porta-cath installed just below my right shoulder. This permits only one connection for blood testing, intravenous feeds, infusions and individual injections, as may be required. The largest advantage of the "port" is that I receive my 46 hour infusion of 5FU from an external pump, connected directly to the "port." This ensures a good degree of mobility, with only minor inconvenience. The "port" is a permanent addition, implanted completely below the skin and requires no patient maintenance. The nurses flush it weekly with Saline and Heparin. Everyone needing Chemo should investigate a port-a-cath.

So where are we now? Well I have received seven courses of Chemo. My cancer markers have improved slightly, despite receiving the maximum doses. There are twelve (12) tumors in the liver, greater than 25 mm in size. These 12 are the tumor markers we are following. Three CT scans, since beginning Chemo, show the liver to be in a stable metastatic condition. Changes to the various tumors range from 1-3 mm smaller to 3 mm larger. Overall density has not changed.

What has changed though is my general well being. This deteriorated significantly while taking Chemo. Mental acuity decreased, feeling in my fingers lessened, my appetite dwindled, tastes and smells changed dramatically. General body functions and systems seemed to slow to sluggish. I slept all the time. My blood results continued to slide. At the time of writing, I have been off Chemo for 5 weeks due to prohibitive blood platelet counts. We are going to try again next week.

Chemotherapy - Status and Decisions

Anemia continues to be an annoyance. I have been playing that game for more than 5 months. I can't say it is extreme, though of concern to the oncologist. It required me to have weekly blood tests plus a weekly shot of PROCRIT. When that stopped having much effect, I was switched to a bi-weekly shot of ARANESP, though the mandatory weekly blood tests continue (CBC, Comprehensive Panel, PT/PTT, CEA and C19-9). When I can eat, I try to have lots of liver, spinach, tuna, etc. Fortunately, I love all of these "healthy" foods. The net result is that I am still anemic, by several whole digits below the recommended heamoglobin count. Oh well.

Then there is the immune system. It remains considerably compromised, due to the chemo I am told. It seems that it improves a bit, then the following week, the numbers drop again. The most recent blood work (CBC) showed the immune system on an up tick, so that is good news.

The major concern for the past 7 or 8 weeks though remains my platelet count. It continues to fall; apparently a direct consequence of the chemo killing the newly generated platelet cells. In fact they are now so low, that I have been unable to have any chemo treatments for over 5 weeks. The risk of a low platelet count is one of failure to clot and internal bleeding. If they do not start to bounce back, then a transfusion will be necessary.

The CT scans and Ultrasounds show little improvement in the 12 liver tumors. The oncologist and radiation specialist characterize the results as a "stable metastatic scenario." Apparently that means that while some tumor dimensions have shrunk 1 to 3 mm, others have similarly increased. Abdominal cavity fluid is still present; caused by fluid from the liver tumors draining into the abdomen. This is uncomfortable, while accounting for the abdominal bloating.

Being off chemo temporarily has the benefit of greatly improving one's "quality of life." No one can comprehend the encompassing impact of chemotherapy on all physical and mental systems. It is like being in hell - I am not kidding. If you can imagine running in very, very deep sand on a very hot day, then apply that to everything you do, including thought, problem solving and interaction with people.

Getting off the chemo for an extended period allows all those systems to heal from the onslaught of the poisons that make up a chemotherapy regimen. Slowly things such as mental acuity, appetite, taste, touch and sense of physical well-being return. It makes it exceptionally difficult to even consider returning to chemotherapy, regardless of the consequences of that decision.

Clinical studies have shown that various Chemo regimens may extend survivability by 5 or 6 months for Stage IV cancer patients. But what are the survival expectations without Chemo. As often as we read of people dying in just a few months, we also hear of the 15 year survivors. So then, how do you decide on the benefit of continuing or discontinuing Chemo? Chemo isolates you from the world and your loved ones, to a degree that is frightening. This effect grows as surely as any cancer while Chemo continues. The effects of Chemo obviate socializing to any degree. Travel or visiting with your family and friends just does not work well. Do you accept that you will miss those opportunities forever, to gain 5 or 6 months? Do you gamble on a longer term survival without the Chemo, in order to spend quality time with friends and loved ones; to do those things that the responsibilities of life have delayed?

How do you know? ...... How do you know?

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