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.