Surgery Follow Up

Last Wednesday we had a follow-up appointment with my surgeon. He was pleased with my progress. The big incision and the chest tube incisions all looked good, and the super glue that they use in place of external sutures is flaking off nicely leaving pink scar tissue behind. There was more "junk" (fluid, clotted blood, tumor, or whatever) in my right chest cavity than he had hoped to see, but that does not seem to be a big problem, because he doesn't want to see me again for three months. The junk means that the right lung is not inflating completely, but at least it is working to some degree. It turns out that the sequence of steps in the lung-removal surgery called for cutting the nerve to the diaphragm before they learned they had to change course and remove only the pleura. Consequently, my right diaphragm is not working anyway, so I guess it doesn't make much difference that the right chest cavity has junk in it.


The next step is an appointment with an oncologist so I can begin chemotherapy. Unfortunately, they are currently understaffed in the oncology section, so I won't be able to see a doctor until Sep 2. However, on Monday, I plan to call M. D. Anderson and check on getting a second opinion on where to go from here. I expect both Scott & White and M. D. Anderson to propose the same treatment regimen, but I want to make sure before I begin. From what I can tell by reading articles and research online, I expect to receive two different chemotherapeutic agents--cisplatin and pemetrexed. Together they provide the most impact on the tumor of the available drugs, but they do not provide a cure and only lengthen life expectancy a little.

Predicting life expectancy for mesothelioma is complicated by the small number of cases available for analysis. If it were a more common cancer, then researchers could take into account individual differences in age, gender, general health, the extent of the spread of the cancer, and other important factors in estimating longevity, but about all my surgeon would say was that he would be surprised and pleased to see me in two years. When the famous paleontologist Steven J. Gould was diagnosed with abdominal mesothelioma in his early 40's, he immediately went to the Harvard library to research his life expectancy. He was shocked to learn that the median survival was only about eight months. However, the median does not tell the whole story, and some individuals live much longer than the median. They are said to be in the "long tail" of the life expectancy graph. Following his treatment, Gould wrote a column in Discover magazine that explained how the median can be somewhat misleading statistic. It doesn't tell is how long those who were still alive after eight months lived, and some lived much longer. I've attached a copy of Gould's article under the Other Pages heading on the right. It turn out that Gould lived 20 years after his diagnosis and died of another cancer. I don't know how long I will live, but I do know that I'm going to do whatever I can to stay in the long tail and use my time the best way I can.

At this point, there will not be much to write because much of the mystery of the disease process has been revealed and the upcoming treatment is pretty clear, so I don't expect to be writing much before the chemotherapy begins.  Sarah added a counter to the blog, so I know that a number of people a day check the blog for new entries, and I appreciate that you are interested enough to check in periodically; however, don't expect to find much in the short run.
 
David

Back on the Blog

Well, today was the first time I've had the mental energy to write a note on the blog. As you might imagine I am both disappointed that they could not remove my lung and pleased to be recovering from a less serious surgery.


I won't be writing much until after I meet with my surgeon on the 20th (I think). Then I should know more about the follow-on chemotherapy and my life expectancy. Thanks again for your readership and your good wishes. I'm gong to stop now and go walk around the house to speed my recovery.

If you ever have any specific questions, please write to us as cancercouple@gmail.com, and I'll try to answer them.

David

After the Surgery

David had the surgery yesterday and he came through it with flying colors. There was only one hitch - they discovered more tumors inside the pericardium (the sack which surrounds the heart). As a result, they did not remove the lung or diaphragm, since they could not remove the pericardial tumors. (There is a very technical explanation for all this, but it was way over my head!) Instead, they shaved off pieces of the lung where there were tumors and they hope to treat the remaining tumors with chemotherapy and radiation. We were both surprised and disappointed, since removing the lung is the best way to get all the cancer out. We hadn’t counted on the tumors near the heart.
David is in ICU today but will probably be moved to a regular room soon. He looks good and is feeling pretty good considering what he went through yesterday. His incision is very large, but is held together with surgical glue, so it really doesn't look too bad.

We appreciate all your good wishes and positive thoughts. They are still needed, so please keep them coming!

Jana

Big Day Tomorrow

Tomorrow I have my surgery, so I won't be adding any posts anytime soon; however, Jana will post updates to keep the interested informed. Thank you all for you thoughts, prayers, and other support. It means a lot to know that people are reading the blog and wishing us well.

The operation and recovery are scary, but I have complete confidence in my surgeons, so I expect to go into surgery with a relaxed frame of mind and with the expectation of an uncomplicated recovery.

Thanks again for your well wishes.

Cancer Deaths and School Improvement

On July 3rd, I wrote about the perfect storm of suffering and loss that some of my cousins and their families have experienced this spring and summer. My cousin Becky died on Wednesday, and on the way to her funeral, I began thinking about how her doctors had failed. They had gone up against cancer and lost Becky. Where’s the public accountability for the medical profession? Do we have articles in the newspapers condemning doctors and hospitals when patients die of cancer? No. Are doctors paid the same whether their patients get well or not? No. Are hospitals that treat cancer patients forced to close and reopen under new management with new physicians and medical staffs when patient death rates do not drop with each succeeding year? No. Why not?

I think there are several good reason why these things don’t happen. First, we understand that the vast majority of doctors are highly trained professionals who have their patients’ best interests at heart, so they conscientiously do their best for their patients. Unfortunately, cancer is a highly complex set of diseases, and our understanding of it is limited despite years of research and clinical developments. We understand that more research and development must be completed before we understand the myriad complicated relationships that cause some cells to become cancerous.

If we call all of medicine’s knowledge of cancer and the available modes of treatment our profound knowledge of cancer, then Becky’s death and those of millions of others must cause us to conclude that our profound knowledge is seriously lacking. The important point is that everyone acknowledges (doctors, patients, and the community in general) that the medical profession is unable to cure all cancer patients. The goal of defeating cancer remains fixed in the headlights, but the medical profession is still an indeterminate distance from reaching it, and people in general seem to know and accept the fact.

Now consider public education where accountability is so popular with politicians, the media, and social critics. Schools are ranked on test scores, and failure to reach achievement goals result in the closing of schools and their reorganization. The situation is very similar to cancer treatment. In both cases you have dedicated individuals working at the limits of their knowledge to achieve clear goals, e.g., cancer survival, improved student learning, and dropout prevention. Both the medical and the educational professions have failed to meet their goals, but in the case of education, there is much public uproar. Why?

I believe the difference lies in the education community’s inability to acknowledge that its profound knowledge is inadequate to the expectations of political leaders. Everyone knows that cancer it tough to beat, but no one seems to acknowledge that “high levels of learning for all” is impossible with our current knowledge. Until educators are willing to say, “We don’t know how to bring the achievement of low-income students to the level of the better-off peers;” until educators are willing to say, “We don’t know how to keep students in school until they graduate;” until educators and the public are willing to acknowledge that the profound knowledge in education is just as inadequate as the profound knowledge in cancer medicine, teachers and principals will continue to be inappropriately bullied and punished in ways that doctors are not.

David

PS: I realize that this post strayed from our cancer treatments, but I never promised to limit myself to that topic alone.  DD

A Surprising Benefit of Exercise

I've never been a fan of exercise. Even though I always sympathized with the person who said, "Whenever I feel the urge to exercise, I go inside and lie down until it passes." I've been something of a sporadic exerciser in my adult years—jogging with my friend John Bower and my sister-in-law Paula, stair climbing when we lived in Spain, and walking through Okinawan neighborhoods the first time we lived in Okinawa. It was only when I was told that I was borderline diabetic that I began to walk seriously. After returning to Austin in 2008, I diligently used the treadmill and the elliptical machine in the little gym in our apartment complex, and with increasing fitness, I was able to get my blood sugar under control. Then when my pleural effusion started last winter, I stopped most of my walking until it was cured at the end of May. Since then I have walked with some regularity and regained some of the fitness I had lost.

Why am I writing about exercise? Because I might not have been offered the extrapleural pneumonectomy if I had not been exercising regularly for the last few years. As I wrote earlier in "A Busy Week," my pulmonary function test results were not very encouraging. The surgeons like to have a score of at least 40 on the tests, and my score was 35. However, as my surgeon said, my big toe doesn't care about how my lungs are functioning. It only cares about whether it is getting enough oxygen. Consequently, my exercise stress test became very important, and I showed that I was able to supply my toe with plenty of oxygen. As a result, my surgeon was able to offer the surgery with a clear conscience. So while I was exercising in the hope of preventing heart problems and of keeping my blood sugar under control, the exercise seems to have paid off in my cancer treatment, something that I never anticipated. The rewards of exercise are manifold and can even improve ones chances of a longer life or a cancer cure. To my family and friends who do not exercise regularly, I heartily recommend finding an exercise that you can enjoy or at least tolerate and getting with it. Not only will you feel better and have more energy, but you never know what other benefits exercise can provide.

David

Dobutamine Stress Echocardiogram

I had my final lab test before my surgery today, and the results were good.  My understanding is that the test looked at blood flow through the heart under a stress that was not related to exercise.  It involved injecting a drug, dobutamine, that made my heart beat harder and then faster--up from 65 to 133 beats per minute.  It was sort of strange to lie on a bed doing nothing while my heart sped up. It must be what a panic attack is like.  Dobutamine, like adrenaline, is a beta-adrenergic receptor agonist.  Beta-adrenergic agonists intensify the action at beta receptors in the sympathetic nervous system.  At the peak heart rate, the nurse injected a beta-adrenergic receptor antagonist which lowered my heart rate by counteracting the effect of the dobutamine.  I was hooked up to an EKG all of the time, and a technician took echocardiograms of the blood flow through my heart valves before the injection of the dobutamine, at the peak heart rate, and then after my heart rate dropped below 100.  It all went smoothly, and my heart responded well to the test.  I'm still go for the operation.

David 

Great Leukemia News!

Jana had an appointment with her doctor today, and her white blood cell count was in the normal range--7,000.  That's down from 186,000 in four weeks.  She is not cured.  She will never be cured, but taking Gleevec daily should keep her leukemia at bay for a long time.  Let's hope that with further basic research into the causes of cancer, all cancers can be treated as effectively as CML.

To celebrate, we went out to dinner at Chili's using the gift card given to us by the women in the office of our old apartment complex.  Thanks Andrea, Sarah, and Paige! 

David

I Never Dreamed I'd Be Pleased When a Doctor Offered to Remove My Lung

On Wednesday morning, I had an exercise stress test that turned out to be less unpleasant than I had expected.  In the afternoon, we met with my surgeon who, after reviewing the stress test results, offered the extrapleural pneumonectomy.  The pneumonectomy is a major operation with significant risks and a long recovery period, but mesothelioma is a very bad disease, and the operation followed by a course of radiation gives me slim chance for a cure.  The other treatment option was to have a more limited operation that removes the tumor and some associated tissue followed by chemotherapy, but the prognosis is even grimmer, so I went with the more radical option that should provide some live extension and the possibility of a cure.  I've looked at some papers that report on mortality following the surgery and radiation and the results are hard to interpret because of the small number of patients and the differences in such variables as the extent of the disease, age, and other underlying medical conditions.  I think I will do fine in the surgery and recovery, so it all depends on whether the disease crops up later in the other lung and whether the cancer has already metastasized and it laying wait in another part of my body.  The odds are, however, that mesothelioma will win in the end, but there's hope for a cure.

I am writing this blog primarily for myself as a way of documenting our responses to our cancers, and I am happy to share it with others who might be interested; however, I think I some of the things I write about may be too much for some readers, so I am going to put a description of the lung removal on another page so those who don't want to know about the details can be spared.

The surgery is scheduled for July 29.

David

Matter-Antimatter Annihilation in the Meso-Man (Me)

At the big bang, theorists believe the universe was composed of equal amounts of matter and antimatter, which immediately annihilated each other releasing a tremendous amount of energy. However, for some unknown reason a tiny amount of the original matter remained undestroyed, and that matter is what we see as the universe today.

Antimatter is rare in the universe today because it would be annihilated when it came into contact with normal matter, but antimatter particles are constantly produced by high-energy collisions and by the decay of some radioactive elements. Last week I had a positron emission tomography (PET) scan to determine the extent of my cancer. That test is based on the annihilation of electrons and their antimatter equivalent, positrons. Here’s how it works.

The PET scan depends on the decay of an unstable isotope of fluorine, fluorine 18. This isotope is produced in a cyclotron by adding a proton to the atomic nucleus. The fluorine 18 atoms are combined with glucose to form a material that is both radioactive and recognized by the body as glucose.

When I arrived for my test I was taken to a small room with a gurney, and an IV was started. Then, the technician brought in a metal container similar to a small thermos bottle with a syringe sticking out of the top. He removed the syringe from the bottle and immediately inserted it into a metal holder. The holder looked like the clear plastic holders technicians use when taking blood samples using vacuum tubes, but it was made of metal. Then the glucose was injected into the IV.

I then had to lie on the gurney in a darkened room for about an hour as the glucose spread throughout my body. All cells take up glucose for energy, but some cells such as cancer and brain cells use more glucose than others. For example, infants’ brains consume about 87% of their metabolic energy, and even as adults our brains, which represent only about 2% of the mass of the body, consumes about a quarter of the body’s energy. At the end of my wait, the glucose was well distributed throughout my body, and I literally glowed with the gamma radiation from the decaying fluorine atoms. It is this glow in the gamma ray spectrum that makes the test possible.

Then I was taken into the room with the scanner. First a quick CT scan was done with x-rays to provide a 3D model on which to attach the results of the PET scan. Then I was slowly moved through the scanner for about 20 minutes as the machine recorded the effects of the decay of the fluorine atoms.

When a fluorine atom decays, it gives off a positron, which immediately interact with a nearby electron in the same kind of annihilation event that occurred at the big bang. When the two particles react, two gamma photons fly away in opposite directions. When they simultaneously strike detectors in the PET camera, their positions are recorded, and that information is used to calculate the position of the fluorine atom when it decayed. The results from all of the atomic decays are then combined to create an image of the body with those cells containing the most radioactive glucose highlighted. On a negative image, dark areas such as the brain, bladder, and cancer indicate high levels of glucose. You can see examples of PET scans here:    http://www.economist.com/node/16349422 and http://en.wikipedia.org/wiki/File:PET-MIPS-anim.gif.

The physics and engineering underlying the PET scan are a marvel to me and make me thankful to the generations of thinkers who devised the philosophical basis for the scientific method, the physicists who uncovered the secrets of the atom, the engineers who designed the scanner, and the medical professionals who use it for the benefit of their patients. On Wednesday, I will get the results of the scan.

David