December 8, 2010

Posting Hiatus

Our cancer news has become pretty routine, so I do not expect to add any posts until after the New Year. I’ll put an announcement of Facebook when I add the next post. Thanks to all who stop by to check in, and best wishes for a great holiday season and a happy and productive New Year.

David

December 7, 2010

A Good Source of Oncology News

Take a look at the top listing in the sidebar to the right.  I added a section with links to oncology information.  The first site, OncologySTAT, provide lots of information including free access to journal articles.  If you're serious about learning about cancer, I recommend taking a look.

David

Low-Dose Asprin May Lower Cancer Rates

Check out this article from the New York Times: http://www.nytimes.com/2010/12/07/us/07aspirin.html?hpw.  It looks like all adults ought to discuss starting a low-dose aspirin regimen with their doctor at their next checkup.

David

December 3, 2010

CT and Blood Test Results, Chemo Round 3

I completed my third round of chemo about two hours ago, and all went well.  I feel good.  I just wish I'd feel as good on Monday through Wednesday.

We saw my oncologist before chemo, and he reported that my blood counts, liver tests, and kidney function were all good.  He also had results from a comparison of my recent CT results with the scans from September and from before my surgery.  There was no noticeable change in the right thorax and no evidence of metastasis outside of it.  Given that they could not see any clear tumor mass the last time, I take the findings as an indication that my disease is at least stable. The results strengthened the cancer patient's chief bulwark against despair--the hope that treatment will at least provide a meaningful extension of life.

Another few thoughts on the topics raised in yesterday's post on the "Why Us" question.  I did not mean to imply in that post that the decisions we make do not have an impact on our lives, only that some events like an automobile accident, winning the lottery, or getting cancer are essentially independent of our actions.  They are not part of some grand narrative.  My understanding of how our actions affect the world and ourselves is consistent with the Asian concept of karma.  My interpretation of karma is as follows:

1.  The world in an extremely complex and interconnected entity.

2.  Our interactions with the world, our decisions and the actions that we take, affect the decisions and actions of others, and those actions and decisions affect even others, etc.

3.  We are impacted by the decisions and actions of others and those influences are at least partly shaped by our previous decisions and actions.  Our decisions find their way back to us through the actions of others.

4.  On the average, good or right decisions return good or right results.  Bad or wrong decisions tend to bring bad or wrong results.

Think of a pond filled with many vibrating posts where each post represents an individual.  The wave-like rings that flow out from my post strike and are reflected from other posts near me and interact with the waves produced by the vibrations of other posts.  The resulting waves return to me.  While the interaction of the waves and the posts is extremely complex, perhaps complex enough to preclude prediction, causality is still involved, and on the average, right action produces positive results and wrong action produces negative results.  One person making right decisions in a field (families, communities, and nations) where most are making wrong decisions will not benefit the one making right decisions much, but as fields are transformed from being composed predominantly of persons making wrong decisions to fields filled predominantly with persons making good decisions, the quality of life improves.  The difficult questions are how to identify good or right actions and how to promote right action.

David

December 2, 2010

Why Us?

The other day, Cancer Couple received a comment from a mother of two young children in Australia who suffers from a difficult-to-classify brain tumor and whose husband is doing well after an autologous stem cell transplant for AML/APL leukemia. You see her beautifully written blog at http://coogeegoo.wordpress.com/.

In closing, she asked, “How do you deal with the "why us?" response that has no answer?” It is a question that I have given some thought to, so I want to share a few ideas.

Many behavioral scholars believe that humans have a built in sense of morality based on cooperation through reciprocity and punishment. It is in our nature to cooperate with others as long as there is reciprocity. I’ll help you, if you help me. However, because people sometimes cheat and do not reciprocate, we are naturally predisposed to punish violators. We have a well-developed sense of fairness that causes us to look for unfair behavior and seek punishment as a way of restoring fairness. An interesting article on the inborn morality of infants can be found here: http://www.nytimes.com/2010/05/09/magazine/09babies-t.html?_r=1&scp=1&sq=infant%20morality&st=cse

I believe our fairness detector is activated when bad events occur in our lives, and we look for reasons for those events. We want to find the meaning of the events so we can determine if someone has cheated so they can be punished. I remember my mother saying, “It’s not fair” with reference to my father’s development of malignant melanoma. He was a good man who worked hard to support his family and was always honest and fair in his dealings with others. My mother thought it was unfair that such a man should have cancer when others who in her view were not so good did not. She was searching for equity in a context in which fairness/unfairness, right/wrong did not apply. Some events have no meaning. The world is an incredibly complex place, and things we see as both good and bad happen essentially at random. That is, they are not part of some overarching, goal directed process. There may be causes for the event, but they are essentially random at the core, like winning the lottery.

I know Jana and I asked the question, “Why us?” but it is a question without an answer. It is as if a meteor had crashed through our roof and struck us down. We know what happened. We can understand the injuries caused by the mass of a meteor crushing our bodies, but to ask why the meteor hit our house instead of someone else’s is a waste of time even though asking the question is a normal response to the situation.

It is reasonable to look for the mechanistic causes of cancer, but the more we understand the biology of cancer, the more it appears that while some actions can reduce our chances of developing cancer, the initiation of any given case of cancer has a random component. A person may choose to smoke and knowingly increase his or her chances of developing lung cancer, but the actual development of the cancer lies in the interaction between the carcinogens in the smoke and the individual’s genetic makeup and lifetime exposure to cancer promoting life events. My father and his nine siblings grew up on a farm and spent a lot of time working in the fields under an intense sun, but he was the only one to develop melanoma. The development of cancer is entirely deterministic but of such a complexity that the absolute prediction of who will and who will not develop the disease is impossible to know at this time.

So that is my answer, Coogeegoo. It is natural to ask the question, “Why us?” but as you noted it has no answer. Please keep writing on your blog. You have at least one person who is not a friend or relative who is interested in monitoring your progress against this challenge that you and your family have been given at such a young age.

David

November 28, 2010

A Word about CML

I'm reading a very good book entitled The Emperor of all Maladies: A Biography of Cancer by Siddhartha Muckerjee. It has an interesting passage about Jana's cancer, chronic myologenous leukemia or CML, that I want to share. The quotation is by Dr. Hagop Kantarjian, an oncologist at the M. D. Anderson Cancer Center.

"Before the year 2000, when we saw patients with chronic myeloid leukemia, we told them that they had a very bad disease, and their course was fatal, their prognosis was poor with a median survival of maybe three to six years, frontline therapy was allogeneic transplant. . .and there was no second-line treatment. . . Today when I see a patient with CML, I tell them that the disease is an indolent leukemia with an excellent prognosis, they will usually live their functional life span provided they take an oral medicine, Gleevec, for the rest of their lives."

The best "cure" in oncology.

David

November 22, 2010

The Man with Two Watches

Readers may remember that on September 28th I wrote about a lab test, Mesomark, that measures a peptide (SMRT) produced by mesothelioma cells. The test is not sufficient to diagnose mesothelioma, but, given that I did not have enough tumor to be visible on CT or PET scans, I had hoped that it might be useful in monitoring changes in my tumor load. My Scott & White oncologist reviewed the packet of information about the test that I had given him and decided not to order the test.

He said that he would not use information from the blood test to make a treatment decision about chemotherapy; therefore, there was no reason to give the test. Also, he expected that it to be expensive (perhaps $1,000) and that my insurance would not cover it. I am disappointed, but upon reflection I agree completely with the logic of his decision.

The test is not well enough understood to be useful. As recommendations from the European Society for Medical Oncology state:

Recent data suggest the possible contribution of serum mesothelin-related proteins and osteopontin as useful markers to support the diagnosis of mesothelioma; however, the precise role of these markers is yet to be defined.

Also, medicine is a conservative practice, and doctors monitor their practice against established guidelines. Practice guidelines and consensus recommendations seem to guide practice and are of value to patients because they provide confidence that the treatment they are receiving is consistent with good practice. By sticking to established practices, doctors are probably protected from malpractice suits and are relieved of self-doubts about the correctness of their actions. As my doctor said, he would be anxious about what to do if the imaging and the blood test results seemed to be in conflict. He would have been like the man with two watches who is uncertain about what time it is.

Furthermore, the high and rising costs of medicine focuses everyone’s attention (especially insurance companies) on the medical rationale for tests and procedures. Even if a doctor wanted to depart from an established approach, the prospect of having to debate with an insurance company or one’s own employer might cause second thoughts.

Nevertheless, I was disappointed. I hate throwing away information, throwing away an opportunity to learn. I would not have expected my doctor to make a decision based on the test results, but I was curious about whether something might be learned that would improve treatment decisions in the future. The blood test might actually be a more sensitive measure of disease progression than CT and/or PET scan results, but there is no way to know without further research to clearly establish the link between tumor mass and SMRP levels. Giving the test to one patient would not make a meaningful contribution to that understanding and would only raise questions requiring further study, but it would have been interesting to know the results. The bottom line, however, is that it would not have been interesting enough for me to pay for the tests myself.

David

PS The second round of chemo went more smoothly than the first. I had less intestinal distress (ate multiple small meals and no chili dogs) and took less of my backup anti-vomiting medicine. I think those two factors made things easier.

November 12, 2010

The History of the World in 100 Objects

While I've been sitting here in the treatment center receiving bag after bag of IV fluid, I've been listening to some very interesting podcasts from the BBC. The series is called A History of the World in 100 Objects. Neil MacGregor, the director of the British Museum, has selected 100 items from the museum's collection around which to structure a history human civilization. The 15-minute programs were broadcast on 100 days this year and can be downloaded or heard online (http://www.bbc.co.uk/programmes/b00nrtd2). The podcasts I've listened to have been very interesting, and I plan to download the series to listen to while I walk.

If you have an interest in the scope of human history, I suggest taking a listen.

David

November 11, 2010

Second Round of Chemo Tomorrow

Tomorrow, Friday, I have my second round of chemo. Of course that is dependent on my blood counts being adequate, which I assume they will be. I've laid in my supply of food that was appealing during the last round--crackers, canned chicken breast, chicken soup, and American cheese. Yes, American cheese. There's something about the dash of paprika in American cheese that was appealing. Forgot to get Minute Maid lime treats, but we'll get that tomorrow.

I had been concerned that I would be dreading the second round, but that has not happened. I know intellectually that I will not feel good, but I don't have a visceral desire to avoid treatment. I'll see my oncologist and get my blood test results and discuss alternatives to the compazine that gave me blurred vision last time. Then I'll begin the chemo. I'm taking a book, an Economist magazine, and my netbook. I want to try out the popular BBC podcasts about history as told through 100 objects in the British Museum.

As always, thanks for reading the blog.

David

November 6, 2010

My Father's Cancer Therapy

Going through my first round of chemotherapy has caused me to reflect on my father’s treatment for malignant melanoma and has increased my admiration of the fortitude my parents showed in going through it thirty years ago.

His disease began in a mole on his lower back that he ignored until it began to bleed. With the diagnosis of malignant melanoma, doctors removed a piece of his back about the size of a packet of cigarettes and hoped that the cancer had not spread farther from the site. Unfortunately, disease appeared in a lymph node under one arm, and he went to the M. D. Anderson Cancer Center for surgery that removed the regional lymph nodes and multiple moles on his chest and back. I’m not sure what prompted him to go to Houston for treatment, but I know his doctor, a well-respected Corpus Christi internist, was not particularly supportive.

Information about medical treatments was not widely available at the time, but as a graduate student at the University of Texas, I was able to obtain access to the Texas Medical Association’s medical library where I read all I could on melanoma and its treatment. I was very relieved when I learned that my father’s treatment plan matched the best I had gleaned from the research. He received two kinds of therapy—the chemotherapy drug dacarbazine (DTIC) and immunotherapy using Bacillus Calmette-Guerin (BCG).

DTIC is a highly emetic drug that causes over 90% of patients to become nauseated, and in the mid 70’s medicine’s ability control nausea was very limited. Nausea would begin shortly after the start of the IV and continue throughout the week. My father would return to the motel room where he would sleep and vomit, sleep and vomit. With repeated treatments anticipatory nausea is triggered by the sights and sounds of the treatment room before treatment even begins, and my father developed a deep-seated aversion to the “elevator music” he heard during treatment. His reaction to the music continued long after his treatment ended.

Melanoma cells can be recognized as foreign and be destroyed by the body’s immune system. BCG, a strain of the tuberculosis bacteria that does not cause the disease, is used to stimulate the immune system’s cellular component which is essential in killing the cells. At that time, treatment with BCG involved my mother scratching a tic-tac-toe frame (like the figure below) on my father’s skin with a needle dipped in a suspension of BCG.

The idea was that the BCG would cause a local infection, inflammation would set in, and immune cells would invade the area and kill the BCG. It was hoped that other immune cells would be stimulated to attack his melanoma cells.

The treatments went on for a number of months. The immune response was variable, and if I recall correctly, it diminished as the treatment advanced. I learned from my father that he spent the time between DTIC treatments dreading the trip back to Houston and I judged him to be “on the ragged edge” emotionally. I had seen some research suggesting that stress impacts the immune system, so I wondered if the stress of the DTIC was actually counter-productive. That is, the stress was so great that it interfered with the immune response, and it was the immune response that held the potential for a cure.

I knew my father would not tell his doctor how the treatments were affecting him, so I wrote to his doctor and told him about how my father’s time between treatments was spent in dread of the next treatment and about my concern that the DTIC might be limiting the effectiveness of the immune therapy.

A few days later, my father returned to Houston and passed out at the start of his treatment. The doctor cancelled the treatment, and he returned home with a tremendous sense of relief. Incidentally, his body’s reaction to the next BCG treatment was the strongest it had ever been, so maybe there was something to the idea that the stress of chemotherapy was limiting the effectiveness of the BCG.

In reflection, I marvel at the stamina of my parents as they worked through the treatments. Would I persist with a treatment as debilitating as my father’s? Would Jana be able to scratch BCG frames in my trunk, arms, and legs? If I were not retired, would I be able to work productively between treatments. I’m two thirds of the way through my first cycle of chemo and feeling good except for a greater sense of fatigue than I expected. My father had to work. With my uncle and another man he ran my uncle’s drive in grocery (think Seven-Eleven). My father worked two rotating six-day workweeks—a 60-hour week followed by a 48-hour week. I could go to work today, if I had to, but I wonder how good I would be, and could I keep it up as many hours as he did? No doubt he was fatigued as well. My sympathy and admiration go out to all those cancer patients who must work and fight the side effects of chemotherapy at the same time.

By the way, the melanoma never returned. The success of the treatment and my father’s positive reports on his experience at M. D. Anderson changed his doctor’s attitude about the hospital so he was more inclined to send patients there for treatment.

David

November 5, 2010

Attention Gold Coast, Queensland, Australia

I have a feature on the blog that allows me to see the location of our readers.  I am not surprised to see readers in Japan, Germany, or the UK where I know we have friends who drop by from time to time to check things out; however, I've noticed that someone in Gold Cost, Australia is also dropping in regularly.

I'm curious about how you came to find the blog.  Would you send me an email and let me know.  No need for names or other personal information, I am just curious.

cancercouple@gmail.com

Thanks for reading.

David

October 29, 2010

Coming out of the Woods

Today, I’ve come pretty far out of the woods. It’s been a week since my chemo and a harder week than I expected after the first day. I was misled by how well I felt at first only to be drawn down by generalized feelings of “sickness.” The hiccups that I had for a couple of days were not too bad, but the intestinal upset, general malaise, and feelings of sickness that followed were more debilitating. My guess is that it took several days for my body to respond in general to the “poisoning” that is systemic chemotherapy; however, the chili dogs I ate may have contributed to that problem as much as the chemo drugs.

I got the sense that my body was whipsawed between chemo drugs stomping on the vomit accelerator and anti-nausea drugs stomping on the brakes. The anti-nausea drugs seem to act on the nervous system, and I wonder if they had anything to do with some strange symptoms I had, especially Tuesday and Wednesday, such as my heart rate dropping into the 40’s. I’m relatively certain that the compazine caused my blurred vision because I stopped taking it last night at 9 pm and can see clearly today. Compazine is a psychoactive drug, and I wonder if I continued taking it after I could have stopped without suffering from nausea? If the nausea accelerator is no longer being stomped, does continuing to stomp on the anti-nausea brakes create other problems? Compazine may have sapped my mental energy as well as my visual acuity, because nothing held my attention. I was simultaneously bored but uninterested in and unable to focus on anything. On the other hand, I had a couple of near-nausea experiences yesterday so maybe I was right not to stop the compazine. But then, how much were the chemo drugs and/or chili dogs responsible for the pervasive sense of sickness? Please excuse my rambling. I’m just trying to make sense of incomplete information.

My appetite has rebounded today. Jana ran over to Taco Bell to get a burrito late in the morning to satisfy my craving, and I just had a salad with canned chicken breast (one of the few foods that has had any appeal in the last couple of days). Oh, I also learned of a delicious treat, Minute Maid soft frozen limeade. It’s like a really nice lime sorbet.

They say that women can only have more than one child because of the built in amnesia that occurs after childbirth; otherwise, they would not go through it again. I hope that a similar amnesia affects chemotherapy patients, but I know from my father’s experience thirty plus years ago that that did not occur then. Maybe the improved nausea control helps.

Time for a frozen limeade.

David

October 25, 2010

Chemo Update 2

Worst day since chemo.  No physical or mental energy.  Hiccups persist.

However, we got good news on Jana's CML.  The blood test that shows the percentage of cells that have the malignancy dropped from 6% to .05% in the last three months.  That sure looks good to me!

October 24, 2010

Chemo Update

It is chemo plus two days now. The first day after chemo started at 2:30 am when I woke up and stayed up until 4:30 or 5:00. I think I felt good on the day of the chemo because of the steroids they gave me to help with nausea, and their stimulating effect woke me up. I wasn’t bothered by being awake in the middle of the night because I was fully awake and read the news and played Spider solitaire happily, but about 4:30 I thought I’d better go to sleep, so I took a Benadryl as the nurse had suggested.

I have had absolutely no nausea even though cisplatin is known to be a powerful nausea stimulator. The anti-nausea drugs work wonderfully, so if you ever face chemotherapy know that nausea is a side effect of the past. I do have the hiccups most of my waking hours, however. I went online and found that the steroids seem to cause the hiccups, and the hiccups should abate when I stop taking the steroids on Wednesday, or maybe even when the dosage is reduced tomorrow. One possible factor may be imbalance in my electrolytes, and I need more sodium, so I’m going to eat a bowl of canned soup for lunch which will provide a lot of salt.

I seem to be benefiting from a positive side effect that I did not anticipate. The pain that is probably caused by nerve damage from my surgery is much diminished. It’s good to have a positive side effect.

David

October 22, 2010

I Feel Good!

I wanted to title this entry as follows, but the title can only be one line long.

I Feel Good!
NaNa Na NaNa NaNa
Didn’t Think That I Would Now!

I had my first round of chemo today—a liter of saline, 500 cc’s of Alimta, a thirty minute rest, a liter of Cisplatin, and another liter of saline. It took about five hours. They also gave me a B12 shot, an anti-nausea drug in my IV, an anti-nausea drug by mouth, and a steroid. I have no side effects of the chemo at this time (6 pm), but may have them later. The B-12 and the steroid may have a lot to do with my feeling good.

It all went smoothly, and my port worked as it should. I just sat in a recliner under a blanket (it’s cold in there plus cool liquids were constantly going into my bloodstream) and read. I took a sandwich and apple for lunch and wheeled my IV stand over to the kitchen area and got some graham crackers later on. The nurses were top notch—knowledgeable, helpful, and had a great attitude.

We learned from the nurse who provided the chemo education that another mesothelioma patient, who flies down from Michigan for his treatment, has a blog. Looking forward to reading it.

David

October 21, 2010

Meso-man Gets a Port

I went in today to have a venous port installed. That sounds like something that would happen when you take your car to the garage. A venous port is a small bulb-like receptacle that is inserted in a pouch under the skin of the chest. It is connected to a catheter that runs to a major vein so fluids can be injected or blood withdrawn from the vein without having to place an IV in the hand or elbow. The chemotherapeutic agents I will receive are very irritating to the skin or tissue if they come in direct contact with them, so using the port to drip the drugs into the body reduces the risk of complications associated with that contact. It also means that my vein will be spared the damage caused by regular needle punctures.

The port is inserted under a low-level sedation. I can remember at least part of the procedure (near the end), but I’m not sure I was very alert for the whole time. The process began with the usual interview by the nurse in which she asked the usual questions about any allergies to medicines, the presence of a pacemaker, the drugs I am taking, etc. The doctor explained the procedure and obtained consent, then another doctor, who I imagine is a resident, came by to introduce himself.

Then the nurse wheeled me on a gurney into the operating room where a tech was waiting. The room was impressive with seven flat panel displays and other equipment. It took quite some time to get me ready (shaving and sterilizing my chest, putting on a mask and hairnet, putting oxygen nosebuds in place, taking my blood pressure, etc.) and position all of the equipment. I wonder what the two little tubes that go into the nose from an oxygen line are called? We use earbuds to listen to music, so maybe we breathe oxygen through nosebuds.

The insertion of the catheter into the vein was conducted under ultrasound and the finished product was x-rayed. I don’t remember the ultrasound part of the procedure, so I suppose I was at a deeper level of sedation at that time, but I did see the x-ray on one of the displays at the end of the procedure. I was conscious enough during the last part of the procedure to listen to the doctors reposition the catheter and attach it to the port and finish up.

I can’t see the location of the port now because of the dressing that covers it, but that will be removed tomorrow when I get my first chemo. I have only a little discomfort at the port site, and I have not taken any Tylenol yet. I have to minimize lifting with my left hand (the port’s on the left side) for some time, so I get a guilt-free pass on working in the yard for a while.

When this disease process began, I found the testing and surgery interesting, and I looked forward to what I would learn. Now, however, it is not so interesting. I have grown tired of being poked and cut on. I still like learning about the procedures, but just not as much. As we were sitting in the prep area waiting for me to be wheeled into the operating room, Jana said that she was more anxious than she expected to be, so I guess we are becoming more sensitized than desensitized to medical procedures. Chemo begins tomorrow, and I’ll write a description of that experience when I feel up to it.

David

PS A picture of my port can  be found on page 12 of this link http://bardaccess.com/assets/pdfs/brochures/bro-port-family.pdf

October 14, 2010

Two Doctor Visits

Jana and I each had appointments with our oncologists this week. Her visit yesterday went very well, and her white blood count is still normal. We would have been shocked if it had been otherwise because she feels so good, but it was reassuring to get positive results. The doctor ordered the blood test that determines what percentage of her white blood cells have the translocation that causes her leukemia, and we’ll get the results next week. The goal is to get the percentage to essentially zero.

Jana’s doctor has a sort of ebullient personality, and he told us how he likes to read Louis L’Amour and Daniel Quinn to relax. Then he loaned us two Louis L’Amour books to take our minds off of cancer. He also told his nurse that we were spies who had worked overseas for many years. I explained to her briefly what we really did. He closed the appointment by giving us each a hug (plus giving Jana a peck on the cheek).

His personality is not what I would have expected from a doctor who is the director of the Cancer Center, the Division of Hematology/Oncology, and the Cancer Research Institute and who has his BA, MA, and MD from Harvard, did his internship at Yale, and his residency and a fellowship at Stanford. A new drug that he has developed is being tried at M D Anderson. I was impressed by his mental energy and playfulness. I wonder if his playfulness is related to his success as a researcher?

I saw my oncologist today, and we decided to go forward with chemotherapy. His argument was that because we know that I have cancer in the pericardium (the sack around the heart) it would be better to begin treatment before the cancer can cause an effusion or other problem that would complicate my treatment. From what I can tell, only about half of mesothelioma patients respond to the chemotherapy, but since I hope to be in the “long tail” of the survival curve, I am ready to proceed. I’ll have a port installed as soon as it can be scheduled next week, and then I’ll have Chemo School and begin the chemotherapy the next day. I’ve got to get some pictures made of my head with hair in case I lose it. I’m curious about how my hair might be different when it grows back.

Watch this spot for a description of my chemo next week or the week after depending on when I can begin.

David

October 7, 2010

Surgery Plus Ten Weeks

It’s been 10 weeks since my big operation. I thought I’d be feeling better than I am at this point. Yesterday, I was more physically active than I have been since the surgery. I walked about two miles first thing in the morning. Then I mowed the front and side yards. Self-propelled lawnmowers are great. Then after lunch and a rest, I edged the back yard with a weed eater and used electric clippers to trim a bed of Carolina jasmine that has taken over a flower bed around one of the pecan trees.

Walking does not bother me particularly, and I have been doing it pretty regularly, but after mowing I had to lie down before and after lunch. Using my upper body, especially my right arm, tires out my back pretty quickly, and I get some dull pain (in addition to the pain of fatigue) up high in my back about where I think they removed the rib. Sitting up in bed, leaning back on a stack of pillows feels really good then. I noticed in the afternoon that stooping and extending the trimmer in front of me as I cut the jasmine not only made my back tired, but made me short of breath sooner than I would have expected.

I have another kind of pain that is pretty much chronic. It is in the front where I have a bulge that is centered on the bottom of my right rib cage. The bulge is a continuation of the bulge that follows the line of incision from high on my back down and around to my side. The pain there gets “crampy” at times and is interspersed with an occasional sharp pain. It seems worse after sitting at the table and eating, so maybe it has to do with my full stomach pushing up on my nonfunctional diaphragm on the right side and stimulating the area damaged by the surgery. This pain in the front is the more troublesome of the two. The back pain can be relieved by resting my back, but the front pain can only be relieved by taking Tylenol, and then not completely. Fortunately, it is rarely very discomforting, even if it is chronic.

Our daughter, Laura, and her husband, Hunter, will arrive tomorrow night to help us prepare for and hold our garage/yard sale on Sunday and Monday. We are so grateful for the help, especially since I’ll probably have to come in and rest my back periodically.

I’ve had a call in to Scott & White this week asking for an appointment with my oncologist; however, I have not heard anything. I’ll have to call them in the morning to see what happened. Jana has a blood test on Tuesday, and she will see her doctor on Wednesday for the results. From how she’s been feeling, we expect the result to be very good.

David

September 28, 2010

Back to Chemo?

Last week my case was presented to the doctors in the Thoracic Center at M. D. Anderson. The next day, the radiation oncologist I had seen called to say that the group did not recommend radiation at this time because it was not clear from the scans exactly what should be radiated. Today, I finally got to talk with my oncologist about chemotherapy, and he reported what I had expected. With nothing clearly evident on the scans, the group did not recommend chemotherapy either at this time. They recommended observation by periodic scans. He also said that their pathologists had reviewed my tissue samples provided by Scott and White and confirmed that I had epithelial mesothelioma—the least aggressive kind.

Now I’ll make an appointment with my oncologist at Scott & White to discuss where to go. I guess I’m favoring starting chemotherapy, but not by much. I’ve been reading today about soluble mesothelin-related protein (SMRT), a substance somewhat analogous to the prostate-specific antigen used to identify men with possible prostate cancer. SMRT is produced by mesothelioma cells, and while the lab test for SMRT is not sufficient to diagnose mesothelioma, it might be useful in monitoring its development and response to treatment. I plan to put together a packet of journal abstracts on SMRT and the MESOMARK lab test used to measure it’s concentration and discuss them with my Scott & White oncologist. Maybe they will be willing to try this lab test as a way of monitoring my response to chemotherapy because the test should be positive even if the tumor cannot be seen on scans.

David

September 25, 2010

Vicodin Withdrawal

I took Vicodin for pain for a couple of weeks each in June and July and then daily between July 29th and last Tuesday. I was taking 12 tablets a day in early August and came down over time to 4 half-tablets on Tuesday. I thought it was time to get off the Vicodin not because I was completely pain free, but because I wanted to get back to a more normal life that included driving the car which I was not supposed to do while on Vicodin. Beginning on Wednesday, I have only taken acetaminophen. I may have come off the Vicodin a little too quickly at the end because Wednesday and Thursday especially, I suffered what appear to be mild withdrawal symptoms. Readers might like to know a little about what it was like.

The most prominent symptom was feeling unwell. When I was taking a couple of Vicodin six times a day, I would experience a mild but pleasurable sense of well being about 35-40 minutes after taking a dose. That feeling decreased with time, partly I imagine because of a developing tolerance to the drug and partly from the decreased dosage, but it certainly helped get me through the pain with a positive outlook. I had just the opposite feeling when I stopped the drug. I suffered from that generalized feeling of being unwell that you get with the flu or other infections, but it was milder—not debilitating, but enough to make me not want to do much of anything. There was also a certain amount of depression thrown in as well. It is now Saturday morning, and that feeling seems to have passed.

I also had a periodic runny nose, and strange sneezing attacks. I may have had a rebound in my levels of pain, but then I didn’t take much acetaminophen either, so it’s hard to know why my pain increased. I am trying to keep my acetaminophen intake down because it can cause liver damage. Except for their addictive nature, opiates in small quantities might be less dangerous than acetaminophen. Opiates slow down the movement of the intestinal tract, so constipation is a problem; consequently, I spent more time that usual in the bathroom the last couple of days and lost several pounds as my bowels cleared out. I imagine this last part goes beyond what you wanted to know, but it makes the accounting complete.

I feel much better today, so it looks like the symptoms were of a really short duration.

As always, thanks for reading the blog. Tomorrow I will begin on a post of a political/economic nature that I hope you will watch for. I don’t think everyone will agree with my view, so I hope it sparks some give and take discussion.

David

September 17, 2010

“The Beat Goes on” (Bono, S. 1967)

The seemingly never ending quest for the next steps in my cancer treatment took us back to Houston this week. On Wednesday I had another chest CT scan, had an appointment with a radiation oncologist, and a PET scan. What had been interesting the first time around (CT, PET, etc.) has lost its allure and become old. On Thursday, we met with the regular oncologist again.

I wrote last week about the difficulty of serving two masters, so it was interesting to hear the oncologist tell me that I was the “captain of the ship,” and the doctors are there to advise me. I didn’t bother to describe how it looks from the patient’s point of view. I may be the Decider to quote President Bush, but weighing the various points of view is not easy. As least I have the advantage of having some grasp of the subject matter and finding it very interesting.

The recommendation from the Scott and White oncologist is to have the chemotherapy. The radiation oncologist at M. D. Anderson seemed to second that opinion but added a round of radiation to follow the chemo. The other oncologist, whose background in internal medicine, suggested having the radiation therapy first and holding off on the chemo until later, if at all. I have attempted to capture his logic below:

  1. Mesothelioma appears to be limited to the right chest cavity.
  2. I have no symptoms or complaints from the cancer itself at this time.
  3. There is little definitive evidence of tumors on the CT or PET scans. The increased glucose update measured by the PET could be caused by inflammation and tissue repair as much as by cancer.
  4. Given the small amount of cancer evident on the scans, one cannot use the PET to determine whether or not chemotherapy is effective. The scans do not have that kind of resolution. 
  5. There is no research to suggest that chemotherapy is more effective when there are few cells than when an observable mass is present.
  6. IMRT is potentially “curative” while chemotherapy is not. Radiation has a good track record of producing local control of cancer following an extrapleural pneumonectomy (which I was going to have); however, the effectiveness is not clear following a pleurectomy (which I did have).
  7. Therefore, start with the radiation because it has the potential to kill cells, then follow up with the chemo when there is enough tissue visible on a CT to determine it’s impact on the cancer.
At this time, I think Jana and I favor this approach although it means I’ll have to spend the work week in Houston for some time, perhaps two months. What’s really interesting is that the radiation oncologist has placed my case on the agenda for review by all the Thoracic Center staff (oncologists, surgeons, radiation oncologists, etc.) for Tuesday. They will put their many heads together and come up with a recommendation that we will hear on Wednesday. We’re really looking forward to what they come up with. Then the captain gets to weigh the evidence and make a decision. One thing is certain, there is no choice that is clearly the best. I don’t suppose it means that it doesn’t matter which decision we make, but it sort of seems that way.

La de da de de, la de da de die.

David

PS Thing are going well. I’m feeling better every day, and the discomfort from the surgery is decreasing. I’m getting out and walking for 40-45 minutes most mornings, and I hope to be off the vicodin in a few days. I'm cooking roast beef in red wine for dinner tomorrow night, and it would have been nice to have a glass of wine with my dinner, but I can't do that until I'm off the vicodin.

September 10, 2010

Cancer Therapy and Matthew 6:24

Having two thoracic oncologists—one at Scott and White and one at M. D. Anderson—reminds me of Matthew 6: 24

No man can serve two masters . . .

Technically, I suppose I have two servants or more correctly, Blue Cross and I have two servants, but the knowledge differences between doctors and patients really puts doctors in a relative position of authority, so I feel like I have two masters.

Jana and I just returned from Houston where we sought a second opinion on my cancer from the doctors at M. D. Anderson Cancer Center (MDACC). To review, my original treatment plan, the extrapleural pneumonectomy (EPP) plus radiation, has a good record of killing the cancer in the affected chest cavity so that it does not reoccur although it can crop up in the other chest cavity or in another location in the body. When the doctors at Scott and White decided not to do the EPP, chemotherapy (which is not curative) became the course they want to follow. My MDACC oncologist on the other hand wants to gather more information before giving up on going for a cure. He wants answers to a couple of questions first:
  • Is it feasible and appropriate to go back into the right chest and remove the cancer that was left in the pericardium?
  • Is it reasonable to use radiation therapy to kill any cancer that was left when the pleura was removed with the lung still in place?
Consequently, we are going back to Houston next week for a CT scan, a PET scan, and a visit with a radiation oncologist. After he has the results of the scans he will talk with a thoracic surgeon and get an opinion from the radiation oncologist. This is where serving two masters comes in. S&W is also scheduling a PET scan to provide a baseline for the chemotherapy, but MDACC will not accept a PET scan from another hospital. Furthermore, I’m sure Blue Cross will not pay for two scans, so I have to get with S&W to see if they will accept the PET from MDACC. Working with the two hospitals may delay further action which gives me second thoughts about getting the second opinion. Trying to coordinate work at two hospitals is no fun.

In other news, I got an email today from an editor of http://pages.videojug.com/ who saw this blog and wanted to recruit me to contribute to their site. I think I’m flattered, but I’m not interested in doing anything more than the occasional entry here.

Thanks for reading our blog.

David

September 3, 2010

Here Comes Chemo!

I met with my new doctor, the oncologist, yesterday and learned that in a few weeks I won’t have any hair. The chemotherapy regimen for mesothelioma uses two drugs, cisplatin and pemetrexed (Alimta) that are given by IV one after the other on the same day. First comes cisplatin (which contains platinum) which takes most of the day to inject. Then the pemetrexed that will take about 20 minutes; however, I only get the drugs every 21 days.

Before they can start, however, I have to undergo a couple of procedures. First I need to have another PET scan (see Matter-Antimatter Annihilation in the Meso-Man from July 4) which will provide a baseline against which to measure changes in my tumor(s). They also will install a port which will provide a permanent line into a vein so no more venipunctures will be necessary. The port which is about the diameter of a quarter will be implanted under the skin of my chest and connected to a vein. When blood is needed for lab tests or a puncture is needed for an IV, they will simply numb the skin above the port and put a needle into the port.

The doctor said that patients usually tolerate the drugs well. I will lose my hair, which I find interesting. I’ve always wondered how I would look if I shaved my head like our friend Jonathan; now I’ll know. I’m going to take pictures of my head before treatment so I can compare the hair that grows back in with my current hair. Will it come back gray from the stress? We’ll have to wait and see.

The drugs can also lower my blood counts, so they gave me a B-12 shot and started me on folic acid to counteract those problems. From what I read the two vitamins also reduce some side effects of the therapy.

Nausea and vomiting is what I fear most from the treatment, but the doctor said that drugs will be given along with the chemotherapy agents to greatly reduce that problem. I was glad to hear that I will not vomit because it’s something I try mightily to prevent. I think it has something to do with the loss of control not to mention the grossness of the aftermath.

Other possible side effects are changes to my sense of taste and hearing as the drugs kill healthy, fast-dividing cells along with the cancer.

After two courses of the treatment (six weeks), I’ll have another PET scan to see what impact the drugs had on my cancer. If the cancer has shrunk or at least not spread, then I’ll get another two rounds of treatment and another PET scan. This will continue until the drugs stop working or the side effects become too bad to continue.

That’s pretty much what I learned. I have requested a second opinion from the M. D. Anderson Cancer Center, but I’ll drop that request if they cannot get me in before Scott & White is ready to begin treatment.

It has been five weeks since the last surgery, and it feels really good to be taking action again.

Jana continues to tolerate her chemotherapy (Gleevec) extremely well.  Apart from an occasional bout of diarrhea, she feels very much better than before--much more energy and a more positive frame of mind.

David

August 21, 2010

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

August 7, 2010

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

July 30, 2010

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

July 28, 2010

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.

July 25, 2010

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

July 18, 2010

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

July 14, 2010

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

July 9, 2010

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

July 4, 2010

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

July 3, 2010

I Don't Know What to Say

When Jana and I were diagnosed with cancer, several correspondents wrote that they do not know what to say. I understand. Typically, responses to the news consisted of one or more of the following components: an expression of sadness at the news, an offer to help, hope for the best possible outcome, and the offer of prayers or keeping us in their thoughts. I think those who wrote that they do not know what to say feel that those expressions are not enough, but they are. They provide the essential core of what one needs to hear. They say that the recipient is valued and there is hope for recovery.

Yesterday evening my cousin Larry posted this item on Facebook:

My sister Becky went into surgery today. They were going to take care of a couple things, but found that the cancer had come back and spread considerably so they just closed her back up. The doctors' prognosis is bleak, but Becky is amazing and kept us all strong. Please pray.

The message is ineffably sad, and now I don’t know what to say. With Jana and me there is still hope for successful treatments, especially in Jana’s case; however, hope for Becky’s recovery is bleak. Larry and Becky are children of my uncle Ray and aunt Martha who were very dear to me. Larry and Becky lost their sister, Cindy, this spring and Larry and his wife Linda lost their son, Wesley, a few weeks ago. This family has experienced a perfect storm of suffering and loss this year, and now Becky’s outlook is bleak. All I can say to Larry and Becky and their families and to Cindy’s family is to know that we are deeply saddened by the news, that we are ready to help in any way that we can, and that you are loved and in our thoughts. It doesn’t seem like enough.

June 30, 2010

Good Leukemia News!

We went to see Jana's hematologist/oncologist today and got good news on her blood cell count.  When Jana began treatment her white cell count was 186,000 where 10,000 is considered normal.  After one week the count dropped to 162,000, and yesterday it was down to 80,000--a drop of 50% in one week.  It will probably take several months for the count to be normal because the rate of decline will slow down, but the doctor was very happy with the results.  Gleevec does appear to be a magic bullet for this cancer.

I can also tell that Jana is feeling better.  She has much less shortness of breath and has more energy.

David

June 26, 2010

Hospitalization: Then and Now

About 25 years ago I had gallbladder surgery. That was before they started using a laproscopic procedure, so I spent a couple of nights in the hospital. That was my last hospitalization until my thoracoscopy in late May. Some things have changed and some have stayed the same.

For the Better

I think hospital admission procedures are easier now. Part of that may be that I receive all of my healthcare from a single organization—Scott and White Healthcare—that uses electronic medical records. The hospital already had all of the information needed for admission, so I simply had to show up at a scheduled time at the hospital and sign a few papers. Very convenient.

I think the hospital is more compulsive about ensuring that the patient is the one they are supposed to be doing something to. The nurses and others would hardly speak to me without asking me my name and birth date, and before the thoracoscopy, the surgeon came in to initial my right shoulder to ensure that everyone agreed that it was my right chest they were going to look at. In the past they would look at my hospital ID bracelet before doing anything, but I guess it is more accurate to have me give them my name and DOB.

My room seemed to be smaller than the one I had 25 years ago; however, it was not too small. It seemed to be just the right size. It had a very comfortable hospital bed, a small recliner, and an interesting small sofa that expanded lengthwise so a visitor could stretch out to sleep. I think that was the best innovation in the room. There was also a small wardrobe with a flat screen TV above it.

Pain management also seems better than 25 years ago. While I never suffered much the first time, I had virtually no pain this time because my epidural drip that shut down pain in the chest area. The painkillers were in a secure, electrically powered box hanging from my IV stand. When the medicine ran out, an alarm would sound, and I’d push the call button and alert the nurses. Then someone from pain management would come around to add new medicine to the machine. Actually, my regular IV also sounded an alarm when it ran out. That seems much more efficient than depending on a nurse or aide’s having to visually check the IV.

There were other new electronic aspects to my stay. Whenever the nurse came around to give me my medications, the cart had a built in laptop with a scanner that read my hospital ID to record who was receiving the dosage.

The final improvement was the use of wound adhesive to close all of my external incisions. With this surgical super glue, there are no more stitches to remove. The glue just flakes off after the incision has healed.

About the Same

At the time of my gallbladder surgery, I had been working long hours, and in some ways the surgery was a kind of a vacation. I really liked the fact that I could watch TV in the middle of the night without worrying about having to get up in the morning and without disturbing Jana or the girls. I also enjoyed rolling my IV stand down the hall to the kitchen and getting juice or ice cream at any time of the day or night. This time, my hospitalization was not a vacation, but it was not a bad experience either because I still had unhindered access to a refrigerator with yogurt, ice cream, and juices.

Worse

The hospital participates in a federal program in which patients rate their stay on several common items, and the results are used to compare hospitals. Items over which nurses and auxiliary staff have some control are provided in the box below.
    · Nurses were courteous and respectful, listened carefully, and explained things clearly.
    · Patients got help from the staff as quickly as they felt they needed it.
    · Patients' rooms and bathrooms were kept clean.
    · Whether patients would recommend the hospital to friends and family.
    · It was quiet at night around patients' rooms.
    · When patients were ready to leave, the staff discussed the help they would need and gave them written information about their recovery.

All of these items are important, but except for the last one, they have little to do with the quality of the medical treatment provided to the patient. The halls were filled with posters about providing “5-star” service on floor 4D, and the nurses, aides, and other staff were with one exception friendly, solicitous, and helpful. The problem is that rankings on these broad items divert attention from more crucial aspects of one's treatment.

The idea that schools, colleges, hospitals, and other institutions can be ranked in terms of quality is appealing on the surface, but the ranking processes are too simplistic to really be useful. Questionnaires are easy to create and analyze, and people think the ratings provide accountability, but it is all so superficial. These items are not sufficient to evaluate the quality of nursing at the hospital. Patients’ reactions are much less important than the ways medical procedures are carried out and the quality of the staff’s responses to nonroutine medical events. The name checking procedures and the use of a computerized system to check medications mentioned above attests to the fact that attention is being paid to important processes, but the fact that I was given different deep-breathing instructions by different personnel, and the fact that my glaucoma drops were somehow misplaced suggest that ratings of patient satisfaction might not be the best data on which to evaluate a hospital. Lets hope that there are leaders in all of these institutions who focus on improving significant institutional procedures and practices in addition to the PR window dressing that the rankings represent.

Oh, did I mention that patients can go down to the floor’s kitchen and get ice cream, juices, yogurt, and other snacks whenever they want?

David

June 25, 2010

A Busy Week

Medical Front

This week has been busy with three trips to Temple for tests and a doctor’s visit.
We had a positive development on Wednesday when we learned that Jana’s white cell count had dropped from 186,000 to 162,000 in one week. I don't know if that is good (whether or not the values might randomly rise and fall by 24,000 from day to day), but we were glad to see that the change was in the right direction. She sees the doctor next week following the next blood test, and we'll be able to quiz her then.

My news was not as positive. They use a scale from 0 to 100 to measure lung function. Without a right lung, they would want a score of 40 or higher before doing the surgery, and my score was only 35. The doctor said he would probably offer the surgery to me, but I still have a couple of other tests to do--an echocardiogram and a max-ox test in which I breathe through a tube while exercising to exhaustion. That test, which will not be done until July 14, will indicate the extent to which my body can process oxygen. I have time to recover from my little surgeries and get in some good walking in order to perform my best. Unless the PET scan turns up cancer in the left chest cavity, I expect I will go for the surgery if it is offered.

I had some interesting tests this week that I'll write up in another post.

Housing Front

We feel very fortunate and relieved to have found a house that we like near the hospital, and we signed a lease yesterday. The address is

3414 Chaparral Drive
Temple, TX 76502

We get the house on July 5, and our household goods from San Antonio (our Okinawa shipment) will be delivered on July 6. It is an older home in an established neighborhood, as you can tell if you check out the address on Google Maps. Even though it is an older home, its energy efficiency was upgraded a few years ago with the addition of insulation and high efficiency windows. I estimate that it was built in the 70’s; however, the kitchen has been upgraded with granite countertops, and other improvements have been made. It's not perfect, but the location and the timing made it the best choice.

David

June 22, 2010

Economist Special Report on the Human Genome

I love the Economist magazine, especially their coverage of science and technology.  The current issue has an outstanding special report on the human genome--what has been learned in the last decade and the implications for the future.  It even includes a discussion of the kind of targeted cancer treatment that Jana is getting.  I highly recommend it to anyone who wants to keep on top of the remarkable findings that are revolutionizing biology.  Here's the link: http://www.economist.com/node/16349358

The report is supposed to be available only to those with subscriptions; however, I believe you will be able to read it because I have a subscription and I'm giving you the link.  If you can't read it, send us an email at cancercouple@gmail.com, and I'll see if I can get it to you.

David

June 19, 2010

Welcome

Welcome to our Cancer Couple blog where we will chronicle our interactions with mesothelioma and chronic myelogenous leukemia (CML). Why would someone create a blog about his or her health? It certainly seems immodest and egocentric, and I suppose it is to some degree; however, I have always found the practice and science of medicine to be very interesting, and I think there is something about the teacher in me that pushes me to share what I have learned with others. For example, there are encouraging developments such as the targeted treatments for CML that deserve to be widely known. I also use intellectualization as a way of managing existential anxiety, and I think writing down my thoughts and observations will help me cope with these medical challenges. I hope that sharing what we know and what we are doing will provide our family and friends with a richer context for understanding when they face similar challenges. Finally, the blog carries on a family tradition. My mother created a scrapbook documenting my father’s successful battle with malignant melanoma, and this blog will be the 21st century equivalent.



Anyway, we are new to blogging and would appreciate any advice our readers might have. For example, what does the “Followers” section on the right mean? Should I take that section off the page?


We hope you find this blog interesting, informative, and useful. Please contact us if you have any questions or comments.


David