Sunday, December 13, 2009

December 13 2009 - It's my Cancer Anniversary

Three years ago today on December 13 2006 I received terrible news of a major cancer recurrence. The CT scan showed five inoperable tumor hot spots in my throat and oral cavity. My surgeon suggested that the palliatative care unit was a reasonable option. That is a group most commonly known for helping to make you comfortable via pain management and psychological counselling but without treatment or the hope of a cure for your disease. At that time I had made major strides towards a recovery from an extensive surgery five months earlier and was considering going back to work. In addition to becoming a patient in the palliatative care unit, I also met with my oncologist and one week later began an endless non-stop regimen of different chemotherapies, one of which continues three years later as I write this blog entry. Last year and the year before on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, as Jimmy Buffet named his nationwide tour last year, “The Year of Still Here.” Well, I’m still here too.

On the health front, I have been in a state of no evidence of disease (NED) for 26 months. That is remarkable. It has not been an easy three years. Long term chemotherapy is physically tough on my body. I have neuropathy in my toes and the balls of my feet, I’m constantly chilled, I have severe aches, pains, and cramps at times, and my muscle tone is less than it should be. I feel like I’ve aged 25 years physically in the last 3 years. I’m 57, but that puts me in the body of an 80+ year old. Plus, I have eating and speaking disabilities. I won’t address them in this blog entry as they have been addressed ad nauseum in past entries. I frequently ask myself, “Why go on?” “Why not just give up?”

The answer is: 1) because I’m stubborn and 2) I don’t think my purpose on this planet is yet complete. Plus, among the physical hardships, life is still good. I visited with 90% of every close friend and relative at least once this past year. We spent quality time together. Some of these people I had not seen since before I had become ill in April 2005. It was so good to see everyone and to see how well they are doing in their lives. If you are one of those 90%, please know how much once again I enjoyed our visit(s). I continue to try to shape my daughter into the grownup I hope she will become someday. We visited six Ivy League college campuses over her spring break. I’m currently teaching her to drive under the firm belief that I’ll do a more thorough job than she will get from a Driver's Education course. (My driving instruction is supplemented by an online driver's ed course.) I took two courses this year; one of which was on writing a non-fiction book held at Rice University, and the other was in analyzing a company’s financial statements at Lone Star College. The latter was a tough course, but I aced it. Although my body is compromised, my mind is still intact. I read some great books this year: The Snowball (a 900+ page authorized biography of Warren Buffet), The Big Rich, The Help, A Million Little Pieces, Nothing To Lose, Gargoyle, and many others. The course at Rice University gave me a finer appreciation for how tough it is write a great book. I began writing a book on my cancer experience. It is a long term work in progress.

People undergoing cancer treatment pass through different phases. I have passed through the period of intense treatment. The intense treatment phase lasted over two years. I do not intend to offend anyone who has been on active duty in a war zone in our Country’s armed services with my next statement, but I feel that intense cancer treatment is similar to being in the heat of physical battle. The enemy is cancer, the treatment is tortuous, painful, and physically and mentally exhausting, and one’s very existence is continually tested. In me it created symptoms similar to post traumatic stress syndrome (PTSD). With the help of a psychologist I have passed through that phase. I’m now looking with some optimism at how to make my best of the time left on this earth. I’m still looking to make a positive contribution. I volunteered to become involved in three worthy causes this year. I was accepted by none of them, but I’m keeping my eyes and ears open for good future opportunities. I hope to find something meaningful before my time runs out. Long term serious illnesses reinforce the reality of mortality.

On a more tactical note, I have my quarterly cancer checkup at the end of this month. I’ll have blood work, a CT scan of my head & neck area, and a visit with my oncologist. I currently feel okay physically. I also felt okay three years ago today when I got that terrible diagnosis. I hope my check up will be a non event. I do have some anxiety about it and will share the results with you all in January.

One last note before signing off… Cancer has also taught me how important love and hope is. I don’t know how to quantify that, but I do know that it plays a huge role in my life with my family and close friends.

Stay healthy and Happy New Year!


Thursday, October 8, 2009

I’ve become a Hypochondriac…

I wasn’t always a hypochondriac, but it is another side effect of my disease. Every ache and pain becomes a potential deadly form of cancer. 90% of the time I keep myself in check and wait until I have a clinic visit to share my concerns. For the most part, they are just that, concerns, not deadly diseases. In reading the following article from yesterday’s Philadelphia Inquirer, I had to laugh. Although the author is a 7 year survivor of breast cancer, she still recognizes each malady as her imminent cause of death. I don’t know if those who have not had a serious disease will find this humorous, but there are enough of us out there, that I’ll share the article here.

Take care everyone.


The Philadelphia Inquirer
October 7, 2009

More than the sum of my medical records Cancer survivors need doctors to know their names.

By Missy Stein

October has arrived, and so has Breast Cancer Awareness Month, as it has come to be known since 1985. For me and others who have been affected by the disease, breast cancer is something we are aware of 12 months a year. For the rest of the world, designating this month provides an opportunity for special events, media attention, and bringing a number of issues related to breast cancer to the forefront. I have one that doesn't get much attention.

As a seven-year survivor of breast cancer, I am a cancer graduate. In other words, I've reached that stratospheric level where I have to visit the oncologist only once a year for an unceremonious checkup.

I recently switched from a doctor I had been seeing at Fox Chase Cancer Center for four years to a doctor at the University of Pennsylvania. My impetus was a letter I received after reaching the point where I had survived five years and was therefore no longer considered to be at high risk.

I had been seeing an oncologist regularly every six months, as is customary for a survivor who has finished treatment. Then, much to my surprise, not long before my first post-five-year annual appointment, I received a form letter from a nurse at Fox Chase. She informed me that I would no longer be seeing the doctor, and that my appointments would be with her from then on. And that was my last contact with Fox Chase, other than having the center transfer my records to Penn.

I recently had my second visit with my new, young, smart, spunky, talented doctor at the Rena Rowen Breast Center at Penn. And the best part was that she knew my name! I mean, she knew who I was without looking at my records.

She didn't ask me when my last mammogram was, because she actually remembered that I had bilateral mastectomies. She asked me about my husband and referred to the fact that he is a rabbi. And she told me that, within three weeks of my transfer to her, three other patients were referred to her for the same reason.

Yes, we are survivors, but for every ache and pain that another person would forget about after taking a Tylenol, we think we have cancer. During my annual visits, when the oncologist asks me if I've had any health issues since we last met, my joking reply is, "Yes, I've had elbow cancer and neck cancer, but I'm fine now."

When you are in the midst of breast cancer treatment, your doctors and nurses become a part of your life. The breast surgeon and plastic surgeon become friends you look forward to seeing, even if you have to sit in their well-decorated waiting rooms for more than an hour.

And if you go through chemotherapy, as I did, the oncologist and the oncology nurses are people you see several times a month, who comfort you when you think you just can't do it anymore, and who laugh with you when you recount the story of how, halfway through your conversation with the UPS guy, you realized you forgot to put something on your bald head before you answered the door.

They know about your frightened children, your crazy in-laws, and the friend who brought you dinner. I didn't realize how much I missed that until I walked out of my appointment with my new doctor that day. I guess I'd been worn down.

Seven years ago, when I had five small children, I gave it my all. I found the best doctors, and I went through a 14-hour surgery and six months of chemotherapy. I learned to be an advocate for myself in every aspect of my treatment, always rising to the challenge.

Over the past few years, though, I'd let my guard down. I'd settled for being just another medical record.

But those days are over. Today I want to say "thank you" to my new doctor for saying my name - not "Mrs. Stein," not "Melissa," but the same name that I introduced myself with when I walked into her office for the first time: Missy.

Monday, September 21, 2009

99% Great News

I had a series of tests and visits at my cancer center today. It began with a blood draw at 6:30 AM, a chest CT with iodine contrast at 8:00 AM, and ended with an oncology clinic visit at 10:00 AM. I was done at 10:30 AM. The phlebotomist left me with a nice little gift… a black blood mark the size of a half dollar on the inside of arm where it bends at the elbow. It may take months for that to disappear. My chest CT was completely clear. Yahoo. My doctor saw no areas of concern during my physical exam. He looks for lumps and bumps, discoloration, tissue tone, etc. That makes it 23 months with No Evidence of Disease (NED). All of this is great news. I’m not sure who enjoys this more, my doctor or me. Needless to say, we’re both very pleased.

The other 1%. We talked about my continued use of the Tarceva. It’s a daily chemo pill and I’ve been on the maximum dosage of 150 mg for 21 months. Prior to the 23 months with no evidence of disease, I had my original cancer diagnosis and 3 recurrences in a 2 year time frame. He believes what I suspected he believed. The Tarceva is keeping my cancer from recurring. The drug side effects have been tolerable. As such, I will continue this treatment. The scary part here is, when will this drug stop being effective? No one knows. It could be days / weeks or it could be years. I’m so much better off than others, but this 1% is raining on my parade.

Take care everyone.

Saturday, September 12, 2009

Upcoming Clinic Visit

I’m scheduled for my first 3 month check up on Monday September 21st. My doctor decided that a CT scan of my chest is warranted. This is based on a note I sent to him regarding what I suspect is a pulled muscle in my left side that has not healed in 2 months. I thought he might start with an x-ray and then, if needed, move to a CT scan. This produces a high degree of anxiety… somewhat out of proportion to the actual pain. Now, only a clean scan will put my anxiety at bay.

June and July were terrific months for me. I was feeling great and saw a lot of friends and family. August and so far into September have not been as kind. Small aches and pains get in the way of enjoyment.

Today is the 9th anniversary of my mom’s death. She died of lung cancer at age 72. This too weighs on my mind.

Take care everyone.

Friday, August 14, 2009

Modified Barium Swallow Test

Hi. I had my modified barium swallow test today. Given the phrase that a picture is worth a thousand words, a video must be worth a lot more. Here’s a 40 second clip of someone (not me) taking the test…

About 30 seconds into the clip you can see how the liquid being swallowed collects for a few seconds (just above the Adam’s apple), then a swallow, and then it goes down the esophagus. As a result of my radiation and surgeries, much of my tissue in the pharynx region (that’s between one’s mouth and esophagus) is fused and just doesn’t move properly. This causes some food and liquid to enter my airway (a.k.a. aspiration). There are techniques I have learned over the past 2+ years to minimize aspirating. This includes eating in a reclining position and holding my breath while swallowing. The therapist administering the test was surprised by how much reclining helped me reduce aspirating. She also felt I had mastered the breathing while swallowing technique. I was surprised to learn that even with all I do to minimize aspirating, I still do aspirate. I could see it live on the motion x-Ray. Although it wasn’t a lot, she feels I am at high risk for pneumonia. One of the best ways for me to avoid pneumonia is to stay active. I guess this is good advice for just about everyone regardless of the circumstance.

The esophageal dilatation that I wrote about in my last two posts will not do me any good. The problem is in my pharynx, not my esophagus, and can not be used to widen an area in my pharynx. I feel good about trying, but disappointed in the result. The therapist that performed this test is setting up an appointment where they will show me some new exercises for my throat that may help with swallowing. That will be in about a month during my next clinic visit to the cancer center.

Take care everyone.

Tuesday, August 11, 2009

Stem Cell Update

Hi. This blog has provided me the forum to talk about a variety of subjects. On November 19 2008 I wrote a blog entry titled, “More Medical Marvels.” It talked about the use of stem cells in repairing a women’s bronchial tube. An article in today’s Wall Street Journal reported that for the first time researchers have developed the first fully functional three-dimensional organ replacement. They took stem cells with genetic properties of a tooth and implanted this “tooth germ” into a mouse’s empty tooth socket. Once the engineered tooth matured, after 11 weeks, it had a similar shape, hardness, and function as a regular tooth. This research was carried out at the Tokyo University of Science. The researchers suggested that using similar techniques in humans could restore function to patients with organ failure.

I’ve been a supporter of stem cell research for a long time. I don’t know where the above scientific breakthrough will take us, but the possibilities are staggering. Imagine a new heart, lung, kidney created from the patients own stem cells. It would almost certainly address the issues of tissue rejection, a lifetime of anti-rejection medications, and shortcomings in our current organ donor/recipient lottery process. I know I’m getting ahead of myself and a tooth in a mouse’s mouth is a long way off from a human heart, but the direction this is taking is damn exciting.

Here’s a quick update on the esophageal dilatation from my last post. My doctor’s office called today and asked if I could come in for the barium swallow test this Friday. So, it won’t be mid-September. This test could lead to an esophageal dilatation which in turn could lead to a better quality of life for me. It really would be a pleasure to eat again. I’m hopeful, but reserved in my hopefulness.

Take care everyone.

Friday, August 7, 2009

Esophageal Dilatation

Hi. I’ve talked at some length in past blog entries about my permanent disabilities and the drive to get back to what I consider a pre-cancer normal state. I’ve more than less given up on eating any solid foods. 95% of my nutrition comes from Boost and skim milk. I’ve maintained my weight for two years on this diet. It’s not that I can’t eat; it’s more that the discomfort of eating outweighs the pleasure of eating. I can chew and taste to some degree, what I can’t do is swallow. Food always gets stuck in the back of my throat and I no longer have the muscles within my throat to move the food down my esophagus. I have to eat and drink in a reclining position and let gravity do most of the work. This keeps most liquid (and the little bit of food that I try to consume) out of my airway.

A head & neck cancer survivor with a similar history as myself informed me yesterday that she was going to have an esophageal dilatation performed on her in two weeks. Having never heard of this, I looked it up. Here’s a link explaining the procedure… It looks like it may have some potential benefit to me. In a nutshell, it stretches your esophagus. I contacted my surgeon last night via email who responded about 15 minutes later. He referred me to my speech therapist to have a modified barium swallow test run on me to determine if this procedure would be helpful. I’ve had 2 modified barium tests, but they were about 3 years ago. Basically, they spike some soft food (e.g., apple sauce) with a small dose of radiation and then watch via a live x-ray how the food works it’s way down your esophagus. You can watch live while the test is in progress. It is actually a pretty cool test. My surgeon also said that the esophageal dilatation procedure was common and routinely performed by gastroenterologists at the cancer center.

I’ve now contacted my speech therapist to request a test and am waiting to hear back. I’ve asked that the test be scheduled for mid September to coincide with my next trip to the cancer center. Once again, this brings some measure of hope to getting back to a more normal life. Not being about to eat is at best awkward in any eating situation. Plus, I just plain miss eating. The thought of being able to eat gives me hope.

Take care everyone.

Tuesday, July 14, 2009

Helping Cancer Patients Find the Meaning of Life

Hi. The WSJ had an interesting article today on a new support group technique which focuses on helping cancer patients find the meaning of life after their diagnosis. It is modeled somewhat on the thought process used by concentration camp survivors during their captivity... finding strength and courage within the most dire of circumstances. Here's a link to today's article...

Good health to you all.

P.S. If you have trouble viewing the article, please send me an email and I'll send it to you.

Thursday, July 2, 2009

Drug Cost Debate

Before getting into today’s topic, a brief follow up from my last post. The radiologist’s report on my head & neck CT scan with contrast from June 23rd showed no evidence of disease. That makes it 20 months with no evidence of disease. Yahoo.

The Wall Street Journal had a terrific article on June 23 2009 titled, “Cost-Effectiveness of Cancer Drugs Is Questioned.” Here’s the link…

For those of you who have trouble with the link, I have included the entire article at the bottom of this posting for ease of reference. The article hit very close to home as I’ve used two of the drugs highlighted in the article. Erbitux (Cetuximab) is the drug to which I had a severe allergic reaction and Avastin is the drug which I credit (along with Tarceva) as the drug which has kept my cancer at bay (or maybe even eliminated it). It is also a very expensive drug and is the one with which I had a dispute with my insurance company.

There were a few points in this article that I’ve been thinking about over the past two years. As such, it may be a good idea to read the article before reading my thoughts.

1. These “expensive” drugs do actually work for some people. Although the average benefit (per the article) is an increase in longevity by 1.2 months, in my case it has been 2+ years. Cancer breakthroughs have been more akin to marginal improvements (like increasing the average miles per gallon in cars), than revolutionary breakthroughs. I don’t think I would be here today if it were not for these drugs.

2. The cost of bringing a new drug to market (see blog entry dated April 8 2009) averages almost one billion dollars ($1,000,000,000). The drug companies are not benevolent entities. They are in business, they have stock holders, and they are there to make a fair and reasonable profit. Among paying their employees, the revenue generated by these drugs funds research into better drugs. In some cases it allows larger drug companies with established drug distribution and marketing networks to acquire smaller innovative companies and spend the money required to move a drug through the arduous drug trial process.

3. Extending time in the last year of life is disproportionately expensive when compared to the years before the “last” year. The article says that this situation “is one of the thorniest questions facing lawmakers working on the overhaul of the U.S. health-care system.” Unfortunately, no one has a crystal ball. In my case, I may be one of the fortunate few where it looked like I was in the last year of life, but I wasn’t. I don’t have an answer here, but it’s an interesting question. Warren Buffet calls it the birthplace lottery. If I had been born in many other countries, these drugs would not have been available to me. Other articles I’ve read on the subject estmate last year of life health care cost at 25 to 30% of total Medicare costs. This percentage includes hospice care. Residents in some states cost twice as much than others. Given the magnitude of this cost and the differences, this should lead to further evaluation and recommendations for change at a strategy level.

Oh well, these are the things that clutter my mind and I thought I’d share them here.

Take care and good health to you all.

Cost-Effectiveness of Cancer Drugs Is Questioned


Wall Street Journal – June 23 2009

The widespread use of expensive cancer drugs to prolong patients’ lives by just weeks or months was called into question by an article published Monday in the Journal of the National Cancer Institute.

Crunching data from published studies, the authors found that treating a lung-cancer patient with Erbitux, a drug that costs $80,000 for an 18-week regimen, prolongs survival by only 1.2 months.

Based on that estimate, extending the lives of the 550,000 Americans who die of cancer annually by one year would then cost $440 billion, they extrapolated.

How to control escalating spending on end-of-life care is one of the thorniest questions facing lawmakers working on the overhaul of the U.S. health-care system.
Some countries, like the United Kingdom, agree to pay for expensive drugs only if they meet a certain threshold of efficacy, but no such rationing exists in the U.S.

The use of costly cancer drugs to prolong patients’ lives was called into question by researchers

Other Big Sellers

In addition to Erbitux, which is co-marketed by Eli Lilly & Co. and Bristol-Myers Squibb Co., the authors questioned the cost-benefit calculus for other big sellers such as Roche Holding AG’s Avastin and Nexavar, which is co-marketed by Bayer AG and Onyx Pharmaceuticals, citing similarly limited survival data. The latter two drugs cost more than $34,000 for a standard course of treatment.

The authors, Tito Fojo, an oncologist with the National Cancer Institute, and Christine Grady, a bioethicist at the National Institutes of Health, called for changes in both the testing and practice of medicine, noting that more than 90% of cancer medicines approved in the past four years in the U.S. cost more than $20,000 for a 12-week course.

Drug makers said the article exaggerated the overall costs of their treatments because few patients are on them for extended periods of time.

They added that many patients qualify for financial assistance and that the high list prices of the drugs reflect the high cost of scientific innovation.

Actual Price of Drugs

Brian Henry, a spokesman for Bristol-Myers, said that the real-world price that patients pay for Erbitux is closer to $10,000 a month; the $80,000 figure that the article uses reflects a benchmark price known as average wholesale price that isn’t typically paid by anyone.
“The total cost of Erbitux therapy varies depending on the course of treatment for an individual patient. The course of treatment is determined by the type of cancer, stage of disease, line of therapy, dosing schedule and duration of treatment based on clinical data,” said Mr. Henry, who added that Erbitux isn’t approved to treat lung cancer.

Nonetheless, the authors said that drugs with marginal benefits shouldn’t be tested unless they can be sold for under $20,000 for a standard course.

They also urged oncologists to cease the widespread practice of prescribing medicines outside of their officially approved indications and to avoid trying new drugs with limited upside on patients who have advanced cancer.

They offered Great Britain as an example, where the government has capped spending at £30,000, or about $50,000, per quality-adjusted life year, saying that bench-marking care to a fixed amount wouldn’t compromise care or innovation.

“Many Americans would not regard a 1.2-month survival advantage as ‘significant’ progress,” the authors wrote. “But would an individual patient disagree? Although we lack the answer to that question, we would suggest that the death of a mother of four at age 37 years would be no less painful were it to occur at age 37 years and 1 month, nor would the passing of a 67-year-old who planned to travel after retiring be any less difficult for the spouse were it to have occurred one month later.”

Consumer Resistance

While some policy experts consider the rationing of health-care resources inevitable in the quest to control medical spending, many Americans have long resisted putting the collective fiscal good over their individual health.

“We can’t add on Mercedes-like drugs one after another and have every single patient cost the system phenomenal amounts of money,” said Eric Winer, chief scientific adviser to Susan G. Komen for the Cure, a breast-cancer advocacy group. “But we have to be careful not to slow down the process of drug development. Ultimately it is medical therapy that will make a huge difference in people’s lives.”

The debate is complicated by the fact that, in some cases, the drugs work very well.
“A drug like Erbitux is not very impressive when you look at the statistics, but for some it’s just remarkable,” said Robert Erwin, who heads the cancer advocacy group Marti Nelson Cancer Foundation. “How much does it cost for the person to have the opportunity to benefit, whether they get the benefit or not?”

Richard Heimler, 49 years old, is among the patients who has benefited from high-cost treatments. He was diagnosed with lung cancer five years ago. In January, he added Avastin to a regimen of other expensive drugs. He credits it with shrinking his tumors within two months of starting with the treatment.

“My strategy has been to stay alive until the next drug comes out, and then stay alive long enough for the next drug after that,” said Mr. Heimler, who lives in New York and was head of development for a nonprofit before retiring two years ago. “If my family and I can afford a drug, we’ll try it. It’s hard to put a value on a life.”

But for Roger Megerth, 73, prolonged treatment with Nexavar wasn’t worth it.

He started taking Nexavar last June after being diagnosed with kidney cancer, but the side effects—indigestion, bleeding in the mouth and intestinal problems—were mounting.

Soaring Prescription Bills

So were the bills. The retired teacher said his school district switched prescription-drug plans and his co-pay for a bottle of 30 pills jumped from $20 to $988.18. He put one month’s supply on his credit card and decided to forgo further treatment after that.
“I would’ve borrowed money and run out my Visa,” but the side effects weren’t worth it, said Mr. Megerth of Billings, Mont.

He said his disease is under control for now, but he is in considerable pain and needs a walker to move around comfortably.

A spokeswoman for Onyx said that 75% of patients on Nexavar spend $50 or less out of pocket for the drug and that patient-assistance programs are available to cover the remainder of its costs.

Wednesday, June 24, 2009

Quick Health Update

Hi. I spent the morning at my cancer center. I left the house at 5 AM and was there before 6. I began with a blood draw at 6:25 AM, an IV inserted at 8:00 AM, a CT scan of my head & neck area at 8:15 AM, and a clinic visit with my oncologist at 9:45 AM. The exam was finished by 10 AM. All-in-all, a very quick efficient visit. My doctor thought I was doing great and looked well. He won't have the CT scan results for a few days. Given how compromised my neck area is from past surgeries and radiation, he is reluctant to give me a diagnosis on his reading of the scan. But, I could tell that he'll be surprised if there is any areas of concern that pops up from the radiologist's reading of my CT scan. Barring any unexpected turns for the worse, my next visit will be scheduled for late September (in 3 months). I haven't gone that long between visits since this ordeal began over 4 years ago. My anxiety level is reduced and I'm feeling good.

Thanks for checking in. Good health to you all.

Thursday, June 18, 2009

Father’s Day

Sunday is father’s day. We had our mini-celebration last night as my wife and daughter will not be here with me on Sunday. It felt good. My daughter made me a to-die-for card (I won’t share the details). They gave me 8 sleeves of Titleist golf balls (which I need as I go through balls like others go through fill-in-the-blank) and a golf GPS device which I wanted (not needed). After what seems like a very long time away from the course, I started back up in earnest a month ago. My typical game from the men’s tees is currently 100 – 110. I did shoot a 94 last week. It was a bit of a fluke. It was also not too far off my game from my pre-cancer days. Anyway, back to father’s day. Someone asked me yesterday what drove me to put all this effort into staying alive. I said there were a few factors, but the biggest was wanting to see and help shepherd my daughter grow up. She’s a teenager and has been quite trying at times in the past 6 months. Her card was a joyful reminder as to why I’m glad that I’m still here.

On the health front, I’m stable. I began a new exercise routine a month ago and it is helping with body tone and stamina. This coming Wednesday I go back to the cancer center for a CT of my head & neck area and a clinic visit with my oncologist. My anxiety level is high. It’s not that I think something is definitely wrong, it’s more the unknown and not-knowing that rattles me. It will take about a week to get all the results from that visit. So, unless there is news before then or the urge hits me to write again sooner, please look for an update towards the end of June.

To all you fathers out there, Happy Father’s Day.

Take care and good health to you all.

Wednesday, May 13, 2009

Brief Health Update

I had three clinic visits at my cancer center today. Following a physical exam by my oncologist he said I looked great. I asked about a longer term prognosis. Paraphrasing, he said that I’ve had no evidence of disease for long enough such that he felt the immediate danger was far reduced. He also said I beat some pretty tough odds to be where I am today with no evidence of disease for 19 months. We discussed the rash which I mentioned in my last blog entry. He did not feel it was cancer treatment related. My other concerns about poor blood circulation and foot neuropathy did not deter him from having me continue on with the daily dose of 150 mg Tarceva pill. In about 6 six weeks I’ll go back for a head and neck CT scan.

On the obturator (mouth prosthesis) front, we abandoned trying to get the new one to fit properly. They adjusted my old obturator. With the device in, I’m estimating that my speech is approaching 85% of the quality of my pre-surgical voice. It still takes some effort, but I’m quite pleased with this progress.

I also saw the physicians and clinicians in the Supportive Care unit. They have been a great resource to me over the past year. They helped me address fatigue, nutrition, and depression. Given the positive trend in my health (both physical and mental), we agreed that I’d call them if there is a future need.

That sums it up for the day. Take care and good health to you all.

Tuesday, May 12, 2009

Treating Cancer as a Chronic Illness

I had a lively discussion a little over a week ago on the subject of taking chemotherapy drugs (any chemotherapy drug) to keep my cancer (if it exists) at bay. What I tried to explain in this theoretical discussion was the potentially toxic side effects of the chemo drugs (e.g., stroke, death) and as a result why one would want to not take these drugs. I’m not sure the recipient of this discussion understood my perspective.

Today, my brother sent an excerpt he had found on the FDA MedWatch website. The article posted on 5/9/09 (less than one week ago) was about Tarceva. See reference 1 below for the full article. In essence, the pharmaceutical company, Genentech, that manufactures Tarceva added wording to their “WARNINGS AND PRECAUTIONS” section on their prescription instructions. Fatality was one of the new adverse side effects. Per my prescription, I have taken the maximum recommended dose of Tarceva (150 mg) daily for over 17 months. That works out to 517 doses. So, my theoretical discussion of just over a week ago has turned into something a bit closer to home. Although rash was a previously known side effect, the new warning seemed to heighten this side affect as a more severe warning sign. To compound the issue, I have a moderate rash on my side that appeared about a week ago. Even before I became aware of the updated warning today, it was one of my top subjects for tomorrow’s cancer center clinic visit.

Here’s what I currently believe. On the plus side, Tarceva is keeping my cancer at bay. On the negative side, Tarceva is causing a moderate rash, continued neuropathy in my feet, and poor blood circulation. I’m guessing my oncologist will examine me tomorrow and recommend that I begin taking a smaller daily dosage with a warning about staying in close touch with him if the rash gets worse.

The bottom line to all this is that treating cancer as a chronic illness is a step in the right direction, but it is not without its pitfalls. This can certainly be a case of the cure being worse than the disease.

On a separate subject, my original diagnosis was April 29 2005. That’s over 4 years ago. I’m still here, but the journey has left me scarred both physically and mentally for life. Last night I had a dream (actually a nightmare) that my right side neck lymph nodes were swollen. This would mean (at least in my mind) that my cancer had returned. It was so real that I spent time feeling the lymph nodes in my neck when I woke up to see if they were swollen. They weren’t, so it was a dream. It was also a relief. This disease will never leave me completely alone. On that note…

Take care and good health to you all.


Wednesday, April 15, 2009

Health care IQ – The results…

Thank you for filling out the survey from my April 13th blog entry. My source for this information came from a book titled, “Redefining Health Care” published in 2006 by authors Michael Porter and Elizabeth Teisberg. Michael Porter is a professor at Harvard Business School and Elizabeth Teisberg is a professor at the University of Virginia Business School. They specialize in competition, business strategy, and innovation. Michael has authored about 20 books and published 70 papers since the mid 1970s, many of them focused on health care.

Survey Q&A

Question #1

How many years does it take between the results of a successful clinical trial and that drug / process becoming a standard medical practice?
· 2 years
· 5 years
· 10 years
· 17 years

80% of survey respondents chose 5 and 10 years. 20% of respondents chose 17.

The answer is, 17 years. I don’t know about you, but this really blew me away. I watched the standard of care change for head and neck cancer patients over the past few years. 4 years ago the standard of care was radiation followed by surgery followed by wait and see. The current standard of care is concurrent radiation and chemotherapy followed by wait and see. I don’t often dwell on how my life could be different “if only” this or that happened. But I do focus on this one. What if the standard of care adaptation had been speedier? 17 years is just too long. And, here’s the sad part. My cancer hospital is probably an early adapter to change. There may still be great cancer hospitals out there treating head and neck cancer today with the old standard of care. I feel bad for the impact on the lives of those patients.

Question #2

Motor vehicle accidents cause more deaths per year than in-hospital medical errors (e.g., wrong drugs, preventable infections). True or False?

80% said false, 20% said true.

The answer is false. According to a study published by the Institute of Medicine (IOM) in 1999 (a little dated), there were an estimated 44,000 to 98,000 preventable in-hospital deaths per years. Motor vehicle deaths were about 45,000. My perspective on this is that preventable in hospital deaths have dropped dramatically since the 1999 study was published at the higher quality hospitals due to building quality, accountability, and transparency into the patient care process.

Question #3

There were (fill in the blank) Americans without health care insurance coverage in 2004. Possible answers were:
- 25 Million
- 45 Million
- 65 Million
- 85 Million

Survey participants were split evenly on the first three choices... 25, 45, and 65 million.

The book quotes a figure of 45.8 million Americans without health insurance in 2004. So, everyone was close to the right answer. The World Factbook puts our current population at 307 million. So, that boils down to about 1 out of every 7 people in the US is without health care insurance coverage. 45.8 million is a huge number. One issue with this is that for most of these people, their first line of health care is a trip to the emergency room. There, they are treated and admitted or sent on their way. Unfortunately, emergency room treatment is expensive and puts a drain on everyone else. One could write an entire book on this subject alone. There are no good quick fixes here.

Question #4

There is a high correlation between how much one spends for health care and how satisfied one is with their care. True or False?

Most survey participants chose false. False is the correct answer. I won’t get into the details of the book, but they measured health care costs in all 50 states. For a similar population set and type of services, costs ranged from a low of $3,500 per year in Hawaii to a high of over $8,000 per year in Louisiana. There was virtually no correlation between health care cost and satisfaction.

Question #5

Medical care spending in the US is 14% of our Gross Domestic Product (GDP). Medical spending in Mexico is less than half that of the US. Life expectancy in Mexico is higher than in the US. True or False?

About 40% of survey participants chose false, the rest chose true. The answer is false. Again, the data is a bit dated (from 1996), but the US life expectancy is 79 years and Mexico is a bit over 76 years. The highest life expectancy is in Japan at 83 years. They spend about half as much on health care as those in the US.


You all did pretty well with your health care IQ. What we need in this country is a health care system which is transparent, reports results (good and bad), looks at care holistically from the patients perspective (from prevention, to care, to rehabilitation), and allows free market competition among heath care providers. I hope you learned something from participating in the survey or at a minimum it gave you some good food for thought.

Thanks again for participating.

Enjoy, take care, and good health to you all.

Monday, April 13, 2009

Health care IQ

I’m continuing to read about our US heath care system. It’s good bed time material. To make this fun and maybe a bit more interactive, I’ve designed a quick one page 5 question survey to test your heath care IQ. Please click on the link below.

It takes less than a minute to complete and doesn’t even have a place to include your name or comments. I’ll publish the answers and the survey results towards the end of this month.

Enjoy, take care, and good health to you all.

Wednesday, April 8, 2009

Cost of Bringing New Drugs to Market

Most of us have seen an email making the Internet rounds on the cost of manufacturing a drug (e.g., Advil), the retail price, and the huge markup… 100s or 1,000s of percent. What’s not factored in is the cost of actually bringing a drug to market.

According to a report by the Tufts Center for the Study of Drug Development, the average total research and development cost for new drugs in the late 1990s was $897 million. THAT’S ALMOST ONE BILLION DOLLARS. THAT’S THE AVERAGE. That total was more than double the average total cost of bringing a new drug to market in the 1980s, and more than five times the cost in the 1970s.

Another recent study estimated that only 21.5% of drugs that began Phase I trials ever get to market. This boils down to just over one-fifth of the drugs that looked promising enough in animal trials to warrant human trials proved to provide an advantage over drugs currently on the market.

So, the next time you pop an Advil, Aleve, or Aspirin and think about how much money the drug companies are making, maybe you will factor in their R&D costs and the lives that were saved, prolonged, or improved along the way.

Enjoy, take care, and good health to you all.

Tuesday, April 7, 2009

Dust in the Wind

Hi. Sorry, but I wasn’t able to keep to my blog schedule. No excuses. My future plan is to publish when I have something to share.

One of the things that helps get me through tough times is listening to music. For those that know me, you know I’m completely tone deaf. That’s doesn’t seem to take away from music’s meditative effect. Some people like classical music. I’m not one of them, but I’m beginning to understand the appeal. I’m a child of the 60s and 70s and still love good ole rock and roll… as long as it’s not too loud. I listen with my eye’s shut. I also like lite country music, songs from Bonnie Raitt or the Dixie Chicks. My current favorite song is Dust in the Wind by Kansas. Here’s the song and lyrics on YouTube...

Give it a try. Sit back, shut your eyes, and go with the music.

Enjoy, take care, don’t take yourself too seriously, and good health to you all.

Wednesday, April 1, 2009

U.S. Financial Markets - The Stimulus Package

Although you didn't come here to read about the economy, since I’m not writing about cancer for now, I thought I’d chime in on a subject that has impacted many people… the state of the U.S. financial markets. Here’s my take. The stimulus package's goals were to 1) prevent the collapse of our financial system, 2) open up the credit markets (e.g., allow prudent borrowing), and 3) allow the free market (i.e., capitalism) to prevail without the ongoing need for government aid.

As a bit of background, I have worked in Washington. First as a summer intern for the Federal Energy Administration (now DOE) between my first and second year at graduate school where I earned a Masters degree in Public Administration from the Heinz School at Carnegie Mellon University and later as a consultant working at the Pentagon for the Strategic Defense Initiative Organization (SDIO - the Star Wars program). What I learned during my years in Washington is that it is very hard to get anything accomplished. The politics, the turf battles, the bidding process, congress, employee morale, you name it… It’s just not that easy.

Now, let’s turn our attention back to the stimulus package. I feel they have succeeded in goal number 1. The stimulus package averted the complete melt down and destruction of our financial system. This was to the initial credit of President Bush who recognized in time the true crisis nature of the situation followed by focused aggressive action on the part of President Obama. I’ve never seen Washington work so hard and so fast in all my years on earth. On goal number 2, the restoration of our financial markets, there is light at the end of this tunnel. And no, it’s not an oncoming train. I know people who are taking advantage of the first time home buyer credit of $8,000 to buy their first home, I know people who are refinancing their mortgages and in doing so are putting significant money into their pockets monthly. This restoration will not happen overnight, but there are positive signs that they are beginning to work. It took us years to get into this mess and it could take years to get us out. On goal number 3, allowing the free markets to prevail, this is the most controversial right now. There are many who would argue that the U.S. went too far in the “forced” resignation of Rick Wagoner (CEO of GM) this week. These are drastic times and drastic measures are needed. Mr. Wagoner seemed like a good guy, he seemed to be trying, but in the end, our government (which is us) decided he wasn’t being successful enough. They didn’t actually force him to resign. They said they would not lend his company any more money if he stayed in place. I don’t want the U.S. car companies to go out of business. I think our government is looking out for our interests. The answer to whether or not we will achieve goal number 3 will not been known for a year or two. I encourage people to have at least a modicum of patience in this area.

Let’s turn to the subject of our deficit. It’s terrible, the worst in history, our kids will surely suffer, and rampant inflation is a given. I’ve heard all of these remarks. They are all possible, but I am willing to support the current deficit when the alternative was a complete collapse of our financial system (see goal 1 above). A collapse of our financial system would have led us into a depression. We have some hard times ahead, future plans about our own personal spending, retirement, and even a child’s education may be altered. But, I say, at least for now, we live to fight another day.

Take care, be patient, and good health to you all.

Monday, March 30, 2009

A Favorite Experience Recalled - Jill Sobule

I’m not sure where this blog is headed. Since I don’t really want to talk about cancer right now, I thought I’d share with you one of my life’s favorite moments. A friend called me today. We started talking about music and concerts, etc when I shared the following story with him.

It was a dark and stormy night. Yes, it really was. It was a Sunday. We lived outside of Washington DC in a Virginia suburb at the time. This took place about 8 years ago. My wife asked if I’d like to go see Jill Sobule play. By then, she had two number 1 songs out… “I Kissed a Girl” and “Super Model.” She also had 5 or 6 CDs at the music stores. I loved her music. She was doing a women’s benefit at a restaurant / bar in downtown DC that night. There was a torrential downpour with lots of heavy thunder and lightening. That may explain why only 20 to 30 people showed up to hear her play. We had gotten there early and had a seat at a table right in front and just slightly left of the stage. Jill came on at about 9 PM. She played for almost 3 hours. Her music was amazing. She did all her music solo. For three hours she stared directly at me. No kidding. At the time, my wife said, “she keeps staring at you.” Towards the end of her set, she invited me up on stage to hold some sheet music for a song that was under development. Although I was a bit nervous, the couple of Long Island Ice Teas I’d consumed and a steady hand kept me from shaking the sheet music. After the show, we bought a CD (although I already had all of them), which she autographed to my daughter with her love. My daughter was a fan of hers as well. Jill has a website at She’s a terrific entertainer. If you ever get a chance to see her, I highly recommend it. I have my wife to thank for taking me out that evening and my sister to thank for introducing me to Jill's music.

Take care and good health to you all.

Friday, March 27, 2009

The Cancer Time Warp

I began seeing a Therapist earlier this year. I see her once every two weeks. It is helping. One “ah ha” moment from my last session emanated from a statement I made to her. I said, “It feels like my diagnosis was just last week [it will be 4 years ago next month] and everything else in my life seems like they happened a lifetime ago." She said it is not uncommon to be self absorbed and engrossed in a personal traumatic event. The event becomes all consuming and most everything else takes a backseat. This resonated with me. It has been like a time warp. The world, events, and people around you continue on with their lives and somewhat gradually (figuratively speaking), I’m coming out of a coma. It feels good to be here.

Updates to this blog will be posted on Mondays, Wednesdays, and Fridays.

Take care and good health to you all.

Wednesday, March 25, 2009

Random Remarks

Hi. Having run out of things to write about regarding my cancer for the time being, yet wanting to continue writing this blog, I thought I’d share a few somewhat random activities I’ve enjoyed recently. I also decided, somewhat randomly as well, to try to write 3 blog entries a week on Monday, Wednesday, and Friday.

Random item #1: I finished a good book this week. It is non fiction and titled, “The Best Practice – How the New Quality Movement is Transforming Medicine.” It was written by Charles Kenney with a copyright date of 2008. The book covers the time period from the early 1980s to the present. It is based on the premise that there are 98,000 preventable deaths each year in the U.S. due to health care mistakes. Mistakes include infections picked up while in the hospital, prescription drug problems (too little, too much, or the wrong drug altogether), surgical mistakes (operating on the wrong side of a patient's brain), and the list goes on and on. The second premise is that regardless of one’s socioeconomic status, only half the Americans on average receive the care and treatment that is needed. The author walks us though how the medical establishment has been trying to transform itself into an organization that is continually striving for improvement and excellence. It’s a good read for anyone interested in health care in the U.S. Coincidentally, I watched the movie Sicko by producer/director Roger Moore the day I finished this book. It presents a similar story as to issues within our health care system without realistically addressing ways to address their causes.

Random item #2: I finished a great fiction book today titled, “Replay.” The copyright is 1986 by author Ken Grimwood. The premise was somewhat like the movie Groundhog Day (Bill Murray 1993), but taking place over a span of 25 years and in a much more complex and intriguing way. It had enough twists and turns to make this a 2 day page turner. If you’re looking for a fast read with great character development, this is it.

Random item #3: I found a website this week that has been gaining incredible traction. It was non-existent 6 months ago and is now rated in the top 3,000 most visited websites in the world. It is based on the premise that one person’s misery can be another person’s entertainment. Somewhat like clips from the old show America’s Funniest Home Videos. Except, these aren’t videos; they are short (300 character or less) stories submitted by people about funny, sad, awkward, etc. situations that happen to them in their day-to-day lives. The website is If you’re a little down and would feel better under the heading of misery loves company, give this website a try.

That’s it for today. See you again on Friday. BTW- Thanks to all of you that have posted comments recently. If you have any topics that you would like to hear about, please post them or send them my way. Take care and good health to you all.

Thursday, March 19, 2009

"You have cancer." Now what? My Top 10 List.

“You have cancer.” Three little words. Those are the words I heard on April 29, 2005. It is almost like it happened yesterday. A doctor did a fine needle aspiration on one of the lymph nodes in my neck. She poked a long fine needle into one of my lymph nodes a few times, withdrew some fluid, left the room, came back a few minutes later, and repeated the procedure. When she came back three minutes later, she said, “You have cancer.” There it was, plain and simple. There was no “let’s run some more tests.” There was no “maybe” in her declaration. I had cancer. I soon learned that it was stage IV, the most severe.

I’ve learned a lot of lessons about cancer and treatment over the past four years. A “post” recently asked – what would you tell someone who just found out they had cancer? Here’s a list of things I would say:

1. Know your cancer. There are hundreds of different cancers. The American Cancer Society (“ACS”) lists 16 categories of cancer representing over 1.4 million new cases in 2008. Each type of cancer is different in the way it invades your body, the treatment options, and the prognosis. The more you know about your specific cancer, the better off you are in working with your medical team and making decisions about how to proceed. The Internet provides access to a wealth of information and resources.

2. Find the right cancer clinic. The ACS estimates that cancer caused 566,000 deaths in the U.S. last year. That is more than one death per minute, 24 hours per day, 365 days per year. Cancer doesn’t take off for weekends or holidays. Finding the right clinic can help save your life. Unfortunately, I have talked to too many women who were told “don’t worry” that lump is probably this or that (e.g., a clogged milk duct). Well, sometimes the doctors were wrong, and those women died. I like the motto: “Hope for the best, but prepare for the worst.” You want a cancer clinic that specializes in your type of cancer. Many clinics are fully prepared and qualified for plan A, but if plan A doesn’t work, they are not going to be able to perform plan B. Plan B for them is referring you to a larger, better equipped center. For me, I’d rather start off with a clinic that can perform plan A, B, C, and D.

3. Find the right doctors within the cancer clinic. I switched oncologists within my cancer clinic after the first year. I lost faith in my original oncologist, so I decided to switch doctors. This is your life, and you should feel confident in the treatment prescribed. There are many options, and being an informed patient will help in choosing a path that is right for you.

4. Treat your core set of doctors as a team. Cancer is so complicated, one doctor is not enough. To be great, doctors specialize. In my case, the core team included an oncologist, surgeon, radiologist, and their physician assistants. They have been supplemented at times with other doctors who specialize in pain management, psychology, and other areas. You should understand how your doctors collaborate. For me, I liked knowing that each week my doctors gathered to talk about each patient, their treatments, progress, and next steps.

5. Understand your treatment and options. This means their probable success, timing, and life altering outcomes. Cancer is treated in slang terms as slash (surgery), burn (radiation), and poison (chemotherapy). These terms were not arrived at lightly. Many cancer treatments are as much art as science. The best doctors don’t have the answers. They use their best judgment and if you are confident in your doctor, then you will have an easier time choosing the right paths.

6. Learn to live with uncertainty. As mentioned, for many cancers, treatment is as much art as science. It can take months for chemotherapy drugs to work or not work. It can be months between major tests. Some surgeries will require the surgeon to keep cutting until they find clean margins. They may not be able to tell you beforehand how much permanent damage there will be, how long the recovery time may take, or even if the surgery will be successful. I remember waking up after a major surgery. In the recovery room, the doctor was talking to the patient in the bed next to mine. He said, “I’m sorry, but the cancer has fully taken over several vertebrae and we were not able to remove it.” I could tell it had been a long, complicated surgery. I couldn’t see the patient as there was a curtain between us, but I could tell that the prognosis was bleak.

7. Understand clinical trials. Clinical trials are typically categorized as I, II, III, or IV. In a Phase I trial, the researchers are generally looking at the toxicity impacts on the human body. These trials are generally small with 10 or less humans. Phase II begins to assess drug efficacy. There may be varying dosages within a Phase II trial looking for the magic bullet. Phase II trials are still primarily experimental and will be limited to a few hundred people. Phase III trials are where it gets really interesting. The research has proven that the drug can be tolerated (Phase I) and it has shown some promise (Phase II). A drug in a Phase III trial could include 1,000s of people across many different medical institutions and countries. They can take years to complete. One drug I’ve been interested in -- Zactima (ZD6474) -- has been under study for years. There are currently 77 trials listed for this drug with a status of active, recruiting, terminated, or completed. Clinical trials have very specific inclusion and exclusion criteria. The website allows you to search among its 70,000+ trials taking place in 163 countries. This is a great resource. There may be a clinical trial out there for you.

8. Understand your health insurance in depth. Read your health insurance document. Not just the guide, but the booklet. There are a lot of areas that become gray to one’s insurance company when the bills start coming in. What looked like a no brainer suddenly becomes a major issue. My insurance company has been reasonable, but not without a few major fights. Know your rights, stick up for them, and use the appeal process if you feel your rights have been violated. For those who have been paying insurance premiums for many years, it is an obligation (contract) for the insurance company to support your needs should they arise.

9. Take charge of the cancer. To the extent possible, don’t let the cancer control your life. There are drugs and therapies that can help you manage chronic, acute, and psychological pain and issues. Take advantage of these resources and make the most out of your current situation.

10. Understand the impact of your cancer on family and friends. Cancer can create stress in relationships. It can also create bonds. Sometimes cancer impacts close family and friends more so than the cancer patient. It has certainly impacted some of my relationships -- some for the better, and some for the worse. This impact can be more powerful than the cancer itself.

I hope sharing this information is helpful. If you would like to comment or add to the discussion, please post a comment. If you have ideas for other discussions or topics, please let me know.

Wednesday, March 18, 2009

Another Cancer Patient Passes Away


I follow 1 or 2 cancer blogs at any given time. I choose them because for different reasons they resonate with me. One blog that I've been following since it's inception 8 months ago is a blog titled "Waeger Will Win" co-authored by Dan Waeger and his fiancee Meg Rodgers. Dan had been fighting lung cancer for almost 4 years when he passed away at 26 (note, I updated his age based on feedback from his mother -- I had mistakenly said "in his early 30s") on Monday March 16 2009. It's probably hard to go back and read the 100+ blog entries since the blog began, but the last 5 are particularly poignant. Even in death, this couple could find compassion, love, sorrow, a winning attitude, and dignity all at the same time. Instead of dwelling on the act of dying, one recent post defined the term "winning" and tied it back to Dan's situation. Another post focused on 25 things to remember about Dan. The blog carries both humor and gravity. If you have an interest in learning from others by example in a time when "for better or worse" followed the "worse" case, yet did so with so much strength and loving, it's worth reading the five posting dated from March 5 2009 to March 16 2009. Their blog is at:

My wishes for peace go out to Dan, Megan and their families and friends.

Two other items. Thank you for all of your comments on my last post entry. About a third were from people who actually posted comments directly on the blog. The rest were excerpts from emails I received. I removed the senders last name (or just included their initials to ensure anonymity) as well as non-cancer related comments before posting them. This blog is more about "my cancer" than it is about me.

One blog comment last week suggested that I provide advice about what approach I would use today, given my found (although not desired) expertise in Cancer World if I were to hear those life changing words today, "you have cancer." That's an excellent suggestion and a topic I'll address in the next few days. They also suggested I ask you what subjects about cancer may be of interest. I certainly don't have all the answers, but it may lead to some useful commentary by me as well as contribution by you. If you have questions or subject areas, please post them.

Once again, posting a comment is easy and doesn't require a user ID or pass code. A comment can literally be posted in a minute by clicking on the word "comment" at the end of each blog entry. Check the "Anonymous" radio button blog option if you'd rather not log in. It is that easy.

Thanks for checking in, stay positive, and take care of yourself.

Thursday, March 12, 2009

Health Update and Comments on MD Anderson

I'll start off today by asking you for a favor. A lot of you have my email address, it is readily available in my blog profile. I always appreciate hearing from you. My favor is that you post comments, when you feel like it, on this blog. It is set up so that you can do it anonymously thereby avoiding the need for yet another ID and password. I'd like to experiment with trying to create a blog community. Thank you. I may change my mind on this, but I'm thinking it may be a fun and useful experience.

I spent a full day at the cancer center yesterday. I arrived at 5:50 AM, had blood drawn at 6:20, a chest x-ray at 6:50, an IV inserted at 7:30, a H&N CT at 7:45, a chest CT at 7:55, a dental oncology visit at 9:00, a surgery follow up consult at 11:00, a supportive care consult at 1:00 PM, an oncology consult at 2:00, and a return to the dental oncology unit at 3:00. I left the hospital a little after 4:00 PM. It was a productive day.

The 2 dental oncology visits took 3 hours in total, no waiting involved. They worked on shaping and finishing a new mouth prosthesis device fitting it to plug the unique defect in my soft palette. I’m wearing it now. Its like getting new braces; it will take a little while to adjust to the feel and fit. I’m encouraged by the early results however.

I measure visit productivity as the time when I’m being seen, examined, or tested (the numerator) by the total time I am at the hospital (the denominator). I don’t use a stop watch to perform this measurement, but I’d guesstimate that yesterday was 70% productive. I’m also guessing that my average visit productivity is around 15%. Visit productivity has no linkage to actual heath care quality. It does however have a high correlation to my (and by a loose interpolation to) patient satisfaction. 15% as an average is pathetic, 70% is off the scale incredible.

My clinic visits involve a great deal of questioning, answering, general catch up, probing and listening with different medical devices and fingers, and in the end an assessment. In summary, my doctors thought I looked well, they did not see or feel any areas of concern, and my oncologist thought I was tolerating my daily chemo pill so well that he left me at the highest recommended daily dosage. I was okay with that. My chest CT had been finalized by a radiologist and showed no evidence of metastatic disease (i.e., no lung cancer). That was a relief after the concern identified by my primary care physician last week. Better safe than sorry in my opinion. My H&N CT will take a bit longer to interpret. With all my surgery-induced scar tissue, a CT with contrast is a good tool, but not a great tool at identifying new cancer growth. Unfortunately for me, it’s probably the best tool available. It will be a few days before I hear back on the test results from this CT scan. I'll post the results when they become available.

My cancer center, MD Anderson, has been rated the number one cancer center in the US for the past 4 out of 5 years. Although my visit productivity value may be low, the quality of care is incredible. They go out of their way to look holistically at patients. There is amazing collaboration among the doctors and the departments. A surgeon won’t feel good about performing an amazing surgery if the patient later dies because the cancer came back elsewhere and finished the patient off. They are also mindful of the quality of life and embed that into their ongoing care. I’m not that happy with some of my surgically-induced changes, but I give my surgeon and his team (assistants, researchers) an A+ along with my oncology doctor, radiologist, supportive care doctor, and dental oncologist for allowing me to get this far, regardless of what happens in the future. One other thing that impresses me about MD Anderson, they have procedures in place and they follow them. They may not make sense to the layman, but I have little doubt that they are there for a good reason and as odd as some of them may seem, they save lives and deliver the best cancer-related health care available in this country.

Take care of yourself. And remember, comments are welcome. A story about yourself, a comment on the material in the blog, or something as simple as a hello are welcome.

Added at 3:00 PM on 3/12/09

My oncologist's Physicians Assistant called with an update on my H&N CT. There is no evidence of disease shown in the H&N CT. That makes it 17 months with no evidence of disease.

Tuesday, March 10, 2009

A Long Day at the Cancer Center Tomorrow

Hi. I have a long day at the cancer center on Wednesday (3/11/09). It will begin with a blood draw at 6:00 AM. That will be followed by a CT scan with contrast (meaning an IV is required) of the H&N and chest at around 8:00 AM. Then I have clinical exams with 4 separate clinics: surgery, oncology, supportive care, and dental. I'll get some feedback on my health during my clinic visits. The CT results will be available in 7 to 10 days. I'm a bit apprehensive, but am going into it feeling well. I'll post results as soon as they are available.

A friend sent me these pictures today. I thought they were incredible and as such am posting some of them on my blog for you all to enjoy. My sister and I experienced a storm similar to the one depicted in picture #1 in the Arizona desert on our way to Tucson in 1970. Double clicking on any single image will show you a larger version of that image.

Monday, March 9, 2009

The Challenge of Eating

Many people ask me why I have difficulty eating. There are probably others who wonder why, but are either too polite or shy to ask. This post is for the curious as well as for others that may have a similar problem. As a bit of background, I had major cancer removal surgery in July of 2006. That surgery removed:
- a 7 by 2.5 inch lining of skin, muscle, and tissue within my upper throat area (and was replaced by tissue from my leg),
- a small portion of my tongue (including a major tongue nerve),
- my left lower jaw (which was replaced by a long piece of titanium and a bone, the tibia, from my leg), and
- last, but not least, half of my epiglottis.

Swallowing is a very complex anatomical mechanism. When it works well, like breathing, it happens effortlessly and naturally. The following link illustrates how the anatomy accomplishes eating and breathing. It is a motion illustration with the red flow representing the breathing and the green flow representing the food movement.

Here’s a still picture of the above link. I recommend using the above link however as it does a much better job of demonstrating how the epiglottis works.

After my July 2006 surgery, I had a tracheotomy that allowed me to breathe for about 2 months and a feeding tube that allowed me to get all of my nutrition for about 4 months. Obviously, it’s easy to see that my anatomy has changed. The rest of this posting described exactly what has changed and how I’ve tried to compensate for those changes.

First, the muscles and their associated nerves which controlled them in the back of my throat which help push food down the esophagus (which connects to the stomach) are gone. Second, half of my epiglottis is gone. A normal and healthy epiglottis moves with each swallow to protect the airway (trachea or windpipe) from food and liquids entering the lungs. Third, I don’t have the crewing power that I had before the removal of my lower left jaw.

There are techniques to eating which help me get food into my esophagus while helping to avoid having food or liquids going down into the trachea (which is attached to the lungs). Food and liquids going into the lungs cause one of two issues. The first is severe and immediate chocking which can cause almost immediate asphyxiation and death. The second is a slower process of illness which is a build up of food and liquid in the lungs which can lead to pneumonia. I’ve read many cases of people in my situation either getting pneumonia or giving up and going back to a feeding tube, or both.

My swallowing therapist a while back taught me to try swallowing using a chin tuck. This is where one takes food into their mouth, tucks their chin to their chest, and then swallows. I’m not sure what this does to the anatomy, but it helps me a bit. Unfortunately, it does not help enough. What I added to this technique is 1) eat in a reclining position, 2) take a breath and hold it before each swallow, and 3) focus intensely on what I’m doing. The result of this is that gravity replaces some of what the muscles in my throat used to do, a small air pocket is created in my trachea thereby helping to keep food and liquids out of my lungs, and by concentrating on what I’m doing, I rarely choke or aspirate. I’m sharing this not so that you can run out and try it, but maybe it can give you a few ideas to talk over with your swallowing therapist. What works for me may not work for you and in no way is an endorsement of something that you should try. We have all been compromised in different ways.

90% of my nutrition comes from liquids (e.g., Boost). The other 10% is a variety of foods, mostly soft and small, to avoid the likelihood of choking. It is not a particularly social way to eat (which is why I don’t eat in public), but it has allowed me to maintain my weight for 2+ years without a feeding tube. I chose to get the majority of my nutrition through liquids because it is easier for me then the intake of solid foods.

I hope this was helpful to some and educational to others.

Thanks for checking in. Take care of yourself.

Monday, March 2, 2009

E Ticket Ride at Disneyland

For those of you that are old enough, you know what the E ticket ride at Disneyland was. I’m not talking about an “E”lectronic ticket, nor am I talking about Disney World. The E ticket at Disneyland was for the best rides. Back in the old days of the 50s, 60s, and 70s, you needed a ticket for each ride once you were inside the park. As a kid growing up in southern California I used to love going to Disneyland and going on the E ticket rides like the Matterhorn with all the speed, twists, turns, and bumps. No matter how many times I rode the Matterhorn, it always thrilled me. To ride the Matterhorn, you needed the E ticket. A C ticket would get you a seat on the Dumbo Flying Elephants. An A ticket would get you into the Sleeping Beauty Castle. The Castle really wasn’t my cup of tea. For me it was all about the E tickets. Truth is, even as a young adult back in Southern California, I still loved the E ticket rides.

What’s this have to do with my cancer? I’m older now and having cancer is like an E ticket ride, but not in a good sense. There are lots of spins, turns, and other unexpected moves that take your breath away.

I stopped posting to this log recently. I was trying to leave cancer world behind. Having no evidence of disease for 16 months has put me in a place where I have been trying to get on with my life outside and away from cancer world. The thing is however, for me, it always seems to want to pull me back in.

In early February I went in for some tests at my primary care physician (PCP) due to experiencing a slight shortness of breath. My doctor took a chest x-ray and did a lung capacity test. He said my x-ray looked clear (although he would have to send it to the radiologist for review) and that my lung capacity was excellent. Given that this all looked okay, he had me see a cardiologist to rule out any heart troubles. That exam was last week. The initial tests were all good. I have one more test tomorrow, but am really not expecting that test to turn up any heart issue. My PCP called today (3+ weeks after my x-ray) and asked me to come back in for another x-ray. The radiologist found a spot on one of my ribs that he thought could be a bone shadow (no big deal)… or, it could be a lung nodule (i.e., lung cancer). For three years at the cancer center my doctors have been very pleased that my H&N cancer has not spread to my lungs. Lung cancer is a natural progression for H&N cancer. Of course, since they are always on the lookout for this and because my mom died of lung cancer in September of 2000, it has heightened my sensitivity to this potential issue. My guess is that it will turn out to be nothing. I feel too good physically (maybe a bit tired at times) to believe that I may have lung cancer. I shared all of this earlier today with my oncologist at the cancer center. He is adding a chest CT to the H&N CT which was already scheduled for next week. The results from those tests will be ready around March 18th. Between now and then, I have to keep reminding myself to take advantage of this time.

Even if the cancer is not back (and I don’t think it is), it is never the less unrelenting. It's like the E ticket ride at Disneyland, even if you're scared and want to get off, you can't.

Thanks for checking in. I'll post again when I have some definitive news. Take care of yourself.

Thursday, February 12, 2009

5 Stages of Grief

Okay. Here’s a test. No peaking ahead now. Can you name the 5 stages of grief? Go ahead, stop, write them down. Did you stop? Did you write them down? For me, as with most things in life, I had to Google it.

They are 1) denial (this can’t be happening to me), 2) anger (why me), 3) bargaining (I’ll do xyz if you undo abc), 4) depression (frustration, hopelessness), and 5) acceptance (which is different from resignation).

So, how’d you do? 5 out of 5? Bravo! I never paid must heed to this. The reason for not paying attention to this is that I never went through stages 1, 2, or 3 (denial, anger, or bargaining). However, now I find myself in stage 4, depression. I’ve done some recent research and have come to find out, not too surprisingly, that this is pretty common for cancer survivors. I know I’ve written about depression in the past, but I seem to be struck in this state longer than seems right. I began some counseling recently which I think will help in the long run. It appears that until I accept the new me, the new “normal,” I’ll be struck in stage 4. So, if I really want to move on with my life, meaning, if I want to live life to its fullest, I have to accept who I am today and leave behind who I used to be. It may sound a little corny, but it is embracing who you are and not who you were. Since, adaptation, is my middle name, I don’t know why this is so hard. Anyway, that’s what I’m working on. I suspect that until I can get to step 5, I’ll be wasting time and energy in step 4.

As to my physical health, I’m pretty good. I had a non-invasive procedure done on my right shoulder which gave it back almost full mobility. I had an x-ray yesterday and my lungs are clear, so no signs of lung cancer (always a concern for H&N cancer victims). I’m half way through a 10 day course of antibiotics to fight a sinus infection. I’ve had no evidence of cancer for 16 months. So, there are no new physical complaints worth mentioning. My next check up is in about a month. I’ll keep you posted.

One last thing, my new favorite song, Good Riddance (Time of Your Life), by Green Day, 1997. Here's a version of it with lyrics on youtube.

Thanks for checking in and take care of yourself.

Tuesday, January 6, 2009

Happy New Year!

I’ve been a bit delinquent in updating my blog lately, so here goes. My systemic health remains good. A visit to the cancer center on Monday for a clinical exam found nothing of concern. It had been 6 weeks since my first “routine” exam back in mid-November 2008. This was the longest period in 3+ years between hospital visits and the extended length of time between visits feels great. My next “cancer” exam visit will be in March and will include a CT scan of the head and neck. I have other visits scheduled at the cancer center, some as early as next week, but it is to work on a new mouth prosthetic device, one that they think may be more comfortable than the existing device. I’m still struggling a bit with some minor ailments which include pain, shoulder mobility, and most recently cold feet. The cold feet are probably a result of peripheral nerve damage from the chemo. I’m seeing a shoulder specialist tomorrow and will probably follow through with a minor shoulder procedure and physical therapy later this month. The bottom line is that I’m spending a lot less time on health issues.

I’ve shifted my time to reading and have two book recommendations. The Longest Winter and The Snowball. The former is the true story of an 18 man platoon during the last year of World War II. They fought at the Battle of the Bulge and helped change the course of the war. For those that survived and were not captured they endured unbelievable conditions as POWs. The latter is a 1,000 page authorized biography on Warren Buffett. This isn’t the first Warren Buffett book that I’ve read, but it is the most engrossing. I’m not quite done with this one yet. Both books provide deep insight into humanity and are inspirational. To change subjects, if you haven’t seen it yet, I highly recommend Slumdog Millionaire as one of 2008's best movies.

Thanks for checking in and take care of yourself.