Monday, August 20, 2012

Adjusting to the New Normal

A few weeks ago I submitted a blog entry to the MD Anderson Cancer Center blog, Cancerwise. The entry was published today, the gist being how I've approached adjusting to loss and my new normal post cancer and cancer treatment. A link to that entry follows:

Take care,

Wednesday, July 18, 2012

DYSPHAGIA (dis – FAY – jah) - Swallowing Disorder

DYSPHAGIA (dis – FAY – jah): This word comes from the Latin root of “dys” which means difficulty and “phagia” which means eat or swallow. Dysphagia is the medical term for swallowing difficulties. Swallowing is one of the most complex neuromuscular movements in the human body and it affects a large and growing number of individuals worldwide. Swallowing difficulties may be due to nervous systems disorders such as stoke, brain injuries, Lou Gehrig’s disease (ALS), multiple sclerosis, muscular dystrophy, Parkinson’s disease, cerebral palsy, Alzheimer’s disease or to head and neck traumas from surgery due to cancer, other illnesses, or to accidents.

I had a Modified Barium Swallow (MBS) test this past week. This test is used to assess one's swallowing function. Highlights from my test were as follows:

·       I have a functional swallowing capability. It works at about 10% of one's normal swallowing capability.

·       My swallowing ability is highly dependent on an environment which supports my compromised capabilities. This includes: 1) consuming mostly liquids, 2) being in a reclined position to let gravity do most of the work, and 3) no distractions. Basically, I am forced anatomically to consume nutrition in a non-social environment using focused concentration to help ensure I minimize aspirating food into my lungs.

The MBS test is one of the coolest medical tests I have witnessed in my cancer journey. It is a live x-ray while swallowing slightly radiated foods and watching how one's swallowing apparatus operates in real time. I was able to upload my MBS video to the Internet and have included a link to that test below. It's 72 megabytes, so it may take a minute or two to launch.

The remainder of this blog entry is information I compiled from a number of different websites in addition to where one might turn to give or receive support for dysphagia.

The numbers: The prevalence of dysphagia is unknown, but Epidemiologic studies indicate that the numbers may be as high as 22% of the population over 50 years of age. Several studies conclude that between 300,000 and 600,000 individuals in the United States are affected by neurogenic dysphagia each year. Plus, 10 million Americans are evaluated each year for swallowing difficulties. Because this disorder cuts across so many diseases, dysphagia is poorly understood and often under diagnosed.

Social impacts: We take many of our bodily functions for granted; for example, breathing, a beating heart, and eating. The impact of breathing and heart disorders are not to be minimized, but they are relatively straightforward. The impact of swallowing disorders is more difficult to quantify. Here are two exercises to help illustrate this point.

·      Think of the number of times in the past week where you shared a meal or snack with friends, family, or even the occasional stranger. STOP HERE! Do you have a number in mind and a vision of those occasions? Now, imagine never having another meal with another human again, EVER. How would your life be different? Would you dine with your family? NO. Would you go out to lunch with co-workers? NO. Would you take clients out to meals? NO.

·      The next time you watch a movie count the number of events where there is any drinking or eating. That sip of beer by the pool, the snacks at the party, the plans made over breakfast, lunch, or dinner. On first blush in thinking about past movies, the eating fades into the background. Remember, we take it for granted. We’re not counting the number of breaths taken of number of heartbeats. The number of events where eating is taking place with amaze you.   

Our society revolves around food and meals. For people with dysphagia, life as you know it ceases to exist. Dysphagia causes depression, low self esteem, lost wages, poor social performance, increased health risk such as aspirating pneumonia and for many leads to an increased likelihood of suicide.

Dysphagia symptoms: Each person is different, but some of the common symptoms of this disorder are as follows:
·      coughing during or right after eating or drinking
·      wet or gurgly sounding voice during or after eating or drinking
·      extra effort or time needed to chew or swallow
·      food or liquid leaking from the mouth or getting stuck in the mouth
·      recurring pneumonia or chest congestion after eating
·      weight loss or dehydration from not being able to eat enough

There are diagnostic tests for dysphagia. These tests are generally run by speech-language swallowing pathologist. The most commonly used tests are the Modified Barium Swallow and the Endoscopic Assessment.

Dysphagia treatment: Treatment depends on the cause, symptoms, and type of swallowing problem. A speech-language pathologist may recommend:
·      specific swallowing treatment (e.g., exercises to improve muscle movement)
·      positions or strategies to help the individual swallow more effectively
·      specific food and liquid textures that are easier and safer to swallow

Resources: There are a few organizations whose mission it is to provide support for clinicians, patients, and care givers for people with dysphagia. Following is a partial list of top organizations:
·      National Foundation of Swallowing disorders (
·      American Speech-Language-Hearing Association (
·      Dysphagia Research Society (

Other Resources: There is a free app for the iPhone named iSwallowTM. It has 15 physical exercises to help those with Dysphagia overcome (or lessen the affects of) this devastating disability. The app is intended to be used by patients after consultation with their speech-language pathologist. The app is 100% free to clinicians and patients. It allows a clinician to input a schedule of daily exercises unique to each patient. The app has a video instruction for each exercise, reminds patients of their exercise routine, helps time their exercises, and records a log of their usage.

How to Help or be helped: The National Foundation of Swallowing Disorders, a non-profit 501(c)3 organization established in 2006 is on a drive to recruit speech-language pathologists nationwide to lead regional in person and online dysphagia support groups. If you are a speech-language pathologist interested in leading a support group in your area, please visit the foundation at If you are a dysphagia patient and would be interested in joining an online or in person support group, please visit foundation at as well. Use the "Contact" tab to send a message to the foundation. There is no fee for registering or joining a support group.

Thursday, May 31, 2012

Tumor tissue donation: Should you consent?


I have been doing some volunteer work at my cancer center during the past year. It doesn't involve a lot of time, maybe one to two days per month. But, I love the work. Most recently, I helped them review their tumor tissue acquisition process. My role in this was to provide a patient perspective on their process.

The cancer center published an entry on their Cancerwise blog website yesterday. Hopefully, this entry provides some insight into why donating a tumor tissue sample, whether for personalized cancer treatment or for the advancement on the science of curing cancer, is something one should consider if asked.

A link to that blog entry is as follows:

By the way, I do draft these articles, but the communications staff at the cancer center adds a touch to them that I really admire. I'd like to thank the MD Anderson Communications staff for their thoughtful additions and edits.

Ed Steger

Tuesday, May 22, 2012

Speech Impediment Simulation


This isn’t the first time I’ve written about having a speech impediment. My impediment is a direct result of my cancer and the life saving treatment. Anatomically speaking, here’s what happened. First, a hole about the size of a quarter was cut in my soft palette to remove active cancer cells. Second, a tumor, probably the size of a golf ball, was removed from the base of my tongue. Unfortunately, a major nerve which ran through the middle of that tumor had to be removed along with the tumor. The removal of that nerve essentially paralyzes the entire left side of my tongue. Both of these affect my speech in different ways. Neither of these two specific surgeries, in and of themselves, has left any visible physical scaring.

Soft palette: When one talks, the soft palette rises toward the back of the throat and makes it so that the air traveling from the lungs over one’s vocal cords does not dissipate through one’s nasal passage. In my case, a significant amount of air dissipates via my nasal passage. The effects are as follows: 1) it takes about 4 to 5 times the energy to speak compared to someone where there is no defect; 2) it creates a nasally sounding voice; and 3) it is almost impossible to speak with any volume.

Tongue nerve: This is a bit harder for me to articulate (please excuse the pun). A speech therapist would be better at describing the reason behind the impact, but I have issues with articulation, especially words with the letters “d” and “g.”

Given that there are no visible signs of physical scaring, I have been asked at times, did you have a stroke? This may seem a bit odd, maybe even rude, but I actually enjoy sharing with others my story and it shows they have an interest by asking. All of this led me to dream up (i.e., develop) a simulation which would help those without my specific defects better understand my disability. Actually, this simulation focuses only on the soft palette part of the disability, but this is the one, that for me is the most frustrating.


Long story short, I asked my visiting cousin to play the guinea pig in this experiment. Thank you Pam, you are a sport.

We needed a large space which didn’t have other people around. I also wanted to measure distances. We chose an empty football field with yardage markers. The simulation was to carry on a normal conversation, but with a twist. We stood 50 yards apart. I texted her a set of open ended questions over a period of about 10 minutes. She answered my questions by speaking loudly over the 50 yards between us. At the end of 10 minutes, we tried the same set up, but with a 25 yard separation.

Simulation results

We spoke about how she felt about the energy required to have a conversation under these circumstances. At 50 yards, she said it was exhausting and she would end up just not talking, it wasn’t worth it. At 25 yards, it was easier, but not comfortable. She gave me a hug, said she had no idea what it must be like for me. It actually brings tears to my eyes just thinking about this. Someone finally understands how this seeming minor defect affects me in common day-to-day life. Thank you again Pam. I suspect, for my specific disability, the correct yardage might be 35 to 45 yards, but it depends on conditions such as wind (or in a social situation, the noise level in a restaurant).


I’ve dreamt up other exercises to simulate other personal disabilities and may give them a try over the next few months. If you search the web, you’ll find handicap simulations for those confined to a wheelchair or those who are blind. Although I didn’t find any disability simulation exercises for those with head and neck cancer disabilities, reading about the design of those simulations were beneficial in conducting the above simulation. The most important aspect was to discuss how the person felt during the exercise.

You can participate

If you try this simulation or have other disabilities you’d like to simulate, please email me your experiences or ideas. I think they would help others.

I’m also beginning to develop a survey to gauge how head and neck cancer survivors view their disabilities versus how they feel others close to them view their disabilities. If you are a head and neck cancer survivor, caregiver, a loved one, or close friend, please email me or leave a message in this blogs comment’s section. When the survey is conducted, I’d like to gather as many responses as possible and will email you with the online survey website address. My email address is in the "About Me" "View my complete profile" section near the bottom of the right hand column on this blog site. I’d include it here, but it would generate even more spam.

Take care everyone (and, I hope to hear from you),

Wednesday, April 25, 2012

A Second Chance at Life

Yesterday, the MD Anderson Cancer Center's Cancer blog, Cancerwise, published part one of a two part article that I authored. Please click on the link below to read part one of the story describing how surviving cancer has given me a second chance at life.

To read part two, which was published today, please click on the following link.

Take care everyone,

Saturday, March 10, 2012

A Road Less Traveled

If you ask a well traveled person where they’ve been, they don’t start with DC, Miami, or Los Angeles. They begin by telling you about their unusual and memorable adventures.

I traveled a road last week that was a road little traveled by head and neck cancer survivors. Here’s my story.

Two and a half years ago I had a Modified Barium Swallow test to assess my swallowing anatomy and shortcoming. I wrote about that test in the following blog entry (you may have to copy and paste this one):

It’s worth a minutes to go to that blog entry as there is a 30 second video about what that test looks like. It’s the coolest medical test I’ve had. The Speech Therapist administering the test told me she had never seen anyone swallow like me. She then went on to say it was akin to how a sword swallower performs a sword swallowing feat. I had combined a technique known as a Super Supraglottic Swallow Maneuver with the ability to control my upper esophageal sphincter (UES) muscle. The UES is typically not under voluntary control.

As I was thinking about this (for the past 2.5 years – I may be slow, but I’m not stupid), I wondered last week if there was something I could learn from a sword swallower that may help improve my ability to enjoy more foods in a social environment. I searched the Internet for sword swallowers and found the Sword Swallowers Association International (SSAI) organization. The website contained a list of about 60 members who had been certified as legitimate sword swallowers worldwide. To be certified you have to actually pass a real sword swallowing test. After a little digging I saw that one of these 60 members lived within minutes of my house.

Many people would have stopped here, had a good laugh, and moved on. But, not me, I’m too stubborn. I reached out and contacted Jim Mackenzie. Jim is a performer (comedian, juggler, tightrope walker, etc) and he agreed to meet me at a Starbucks near our homes. And, as part of his performances, he swallows swords. Plus, he is funny, a great listener, and wanted to see if what he knew could help me.

Jim watched me swallow to assess, based on his own swallowing experiences as a human and a sword swallower, what part of my anatomy was and was not working. By the way, Jim is not a doctor, claims no expertise in this area, and did not recommend that I do anything. What he did do however is proceeded to show me (in a little hallway in the back of the Starbucks) how he learned to swallow swords (by way of demonstration) such that, if I of my own accord and free will, wanted to try these techniques. If and when I try these techniques, which Jim has spent years mastering; I’ll let you know how it works out. By the way, Jim did get a few stares from the Starbucks crowd during this private demonstration. Please visit his website at if you are looking for a performer for an upcoming event. I think Jim would be a great addition and I’d like to thank him for taking the time and having the interest in helping me.

One rarely knows where life will take them. I thought this a worthwhile stop worth sharing about my cancer journey. It has taken me to places I never would have imagined before cancer.

Take care,

Sunday, March 4, 2012

National Foundation of Swallowing Disorders (NFOSD)

I've been following the work on and off of a physician and PhD researcher, Peter Belafsky at the University of California Davis campus, for over a year and wrote about his work in a blog post in December 2010 ( I asked my surgeon about him last week. Although he didn't know him personally, he was familiar with his work as a physician surgeon who has focused on swallowing disorders. He is a medical advisor to the NFOSD organization. This organization ( developed a documentary on swallowing disorders. Here's a link to that documentary.

The part of the documentary that resonated with me was by Sonia in a clip that began at the 30 second mark and ends two minutes later. For those of you who wonder what it's like to have swallowing difficulties, she hit the mark for me.


Saturday, March 3, 2012

Health Update - Leap Year Day

I had a full day at my cancer center on Wednesday February 29, 2012. Blood draw at 7:30 AM, CT scan, and 3 separate clinic visits with my oncologist, surgeon, and dental oncologist. I received the radiologist's report of my CT scan results on Thursday; no local or metastatic evidence of disease. After 3 quick, life threatening recurrences in the 2005 to 2007 time frame, I've had no evidence of disease since October 2007 (4.5 years) and have been in remission since December 2009 (2 plus years). This is remarkable!

I'm not sure that my doctors will ever consider me "cured," but this is the next best thing.

Take care everyone.

Tuesday, February 7, 2012

MD Anderson Cancerwise Blog Post

I wrote a new blog entry which appeared in my cancer center's Cancerwise blog today. The blog entry is on simple tools I use to help manage my ongoing care. Following is a link to the post.


Sunday, February 5, 2012

To Walk in My Shoes

I have blogged in the past about my “new normal.” The “new normal” is the state in which I find myself (physically and mentally) as a result of my cancer and the life sustaining medical treatments of radiation, chemotherapy, and surgery. My “new normal” characteristics include a lack of stamina, a compromised immune system, speech difficulties, swallowing issues, lack of saliva, minor facial paralysis, extremity neuropathy (mostly in the balls/toes of my feet), maintaining a comfortable body temperature, manageable chronic pain, occasional TMJ, and lastly (self-diagnosed) a form of PTSD.

What’s not on this list is the external facial scaring from multiple facial surgeries. What makes this important is 1) my surgeons did an amazing job of facial reconstruction and 2) whatever scars I do have just don’t bother me.

The following is in no way a complaint; it is an explanation of how these changes impact me on a day-to-day basis and I’ll do it by way of two examples. The world that makes up my “new normal” is all internal, there are no obvious visible scars, lost limbs, obvious paralysis, etc. that would alert outsiders (i.e., that’s everyone outside my body) to see that my world may be different than theirs. This point is important! I look normal to everyone and the halo effect takes over until I do something that may seem anti-social or unusual.

Example 1: Oral hygiene. Without rehashing old news, I have trouble keeping my oral cavity clean. While the majority of what I drink ends up in my stomach (where it should), some of it remains in my oral cavity, upper esophagus, and at times in my wind pipe. I can’t wash it down, brush it out, gargle or find any other effective means of keeping my oral cavity clean. I have to spend time after each meal meticulously washing my oral cavity. What this means is that I like to eat (and I use that term loosely) twice a day so that I’m not spending more time than necessary taking care of my oral hygienic needs. A few years ago I bought a used Gomco aspiration suction device off of eBay for $100. To give you a feel for its age, it had a tag that said “Inspected 1977.” It weighs about 30 pounds, is something that you may have seen in your dentist’s office in the 1970s and 80s and is pretty effective at helping me clean my oral cavity. Unfortunately, it’s not all that portable. I traveled from Texas to Virginia earlier this week. My mouth felt very uncomfortable because I couldn’t properly clean it. My wife and I headed to CVS to see if there was a solution to this problem. She found a small electric baby nasal suction device ($31) from Graco. I knew it wouldn’t work as is, but I thought a trip to Home Depot would yield good results. I bought some small plastic tubing and a gasket ($5) and now have a device that does what I need it to. Below is a picture of the device. In addition to all the above, I see my dental hygienist every three months to help keep my oral hygiene in check. Keeping my oral cavity clean after all my treatments is mandatory to my continued good health.

Example 2: Standing and talking. Who out there can not stand and talk? I don’t see many hands. I can stand and talk, but it causes my obturator (a device I wear inside my mouth that helps me with speech) to put a strain on my back teeth which in turn can lead to TMJ and severe pain. It is much more comfortable for me to talk while sitting and, in addition, to not just sit, but to sit in a slightly reclined position. This has an impact on me in social situations. Remember, I look normal. I know standing and talking is a great way to socialize, yet I also know this will lead to pain. I find it awkward to go into another room and sit by myself although this is the action I sometimes take. If I slouch when I sit it is not because I’m lazy, it is because it is more comfortable and in the end will mean less pain. It is these little nuances in my behavior that have an impact on my day-to-day living.

Each and every one of my other differences has their own impacts and nuances. This blog entry is not a complaint; it’s me trying to explain what to some may appear odd behavior, but to me it is a way to manage my differences in the best way I know how.

Take care,


Wednesday, January 25, 2012

Texas Doctors Lead Open-Notes Movement

Following a visit to your doctor, have you ever been:
- curious about what your doctor wrote in your file?
- unsure about what the doctor said?
- confused by medication instructions or anatomy terms you didn't immediately understand?

If so, raise your hand. You can't see me, but my hand is raised.

I was honored a few weeks ago when the Houston Chronicle contacted me and asked if I'd like to be interviewed for an article on MD Anderson Cancer Center's system which allows patients to access their own medical records. A Houston Chronicle reporter, Todd Ackerman, talked with me for about 30 minutes. Last week on January 17 2012, the article was published in the front section (page 6) of the Houston Chronicle. Yes, that's me in the picture. I'm pretty sure the photographer got my "good" side.

I won't repeat the article's contents, but the gist is that open medical records can reduce patient anxiety, improve patient/doctor communication, and save time. Here's a link to the article.



Saturday, January 14, 2012

Five Facets of Your Employer Health Insurance which may Surprise You

Health insurance purchased through your employer is an agreement between you and your employer to provide medical services and medications in exchange for payment premiums in the event such services or medications are required. It is similar to other types of insurance including automobile, homeowners, and life. One hopes they never have a need for the insurance, but if the need arises, one expects the agreement to be honored. From the time I entered the workforce in the mid 1970s to the time I left the workforce 30 years later in the mid 2000s, I always participated in and purchased health and life insurance through my various employers and didn’t give it much thought.

My journey into Cancer World has taught me a few lessons about health insurance worth sharing. The following points are some of my experiences and ones which I hope may help others.

#1: Black and white insurance company policy statements become grey areas once the bills begin to accumulate

Let’s begin with the basics, where do you find your insurance policy? Is it the few page description on your company’s website describing in-network providers, out-of-network providers, and co-pays? That’s a good overview and one that is useful to the vast majority of users and uses, but that is not your policy. The real policy is typically found in something called the “Summary Plan Description” or referred to as the SPD. My currently available Summary Plan Description is a 278 page document. To someone who hasn’t given healthcare insurance much thought, this document is intimidating. A brief somewhat comical side note is in order here. For about a year I tried to get the “full” plan document since what I had was the “summary” plan document. The “full” plan document turned out to be a 2 page agreement signed by an executive officer at my company. In short, I’m not sure what the word “summary” connotes in a 278 page document. But I digress.

In 2008, my SPD stated the following as a covered medical expense, “Prescription drugs approved by the Food and Drug Administration (FDA), used and sold in the U.S., and used for a medically accepted reason.

My oncologist, a highly regarded and published physician at the cancer center rated number one in the country, prescribed a medication to me that in his opinion was medically necessary, was FDA approved, and was sold in the U.S. Based on the information in the SPD, the situation seemed pretty black and white to me. What do you think? What if you were in this situation?

I’ll make a long story short. My insurance company denied reimbursement for this FDA-approved medication. I spent weeks writing an appeal while sitting on some very expensive bills from my cancer center which my insurance company refused to pay. The denial interrupted my treatment plan. About two months after receiving the denial letter and working through the appeals process, my insurance company agreed to pay for past and future medication expenses for the drug which they had denied.

#2: Where an insurance policy states that the company reserves the right to amend, suspend, or terminate a policy at any time, this should be taken seriously

I don’t have any advice here. As such, this is more of a heads up than a facet of your policy which can be reasonably anticipated.

By way of example, my insurance company implemented a new policy in the middle of my cancer treatment specifically targeting the medication used in my treatment. Instead of calling me and giving me some warning about this new policy, they sent me a letter about a month after the policy was implemented denying payment for the treatment. This was after eight (or nine) treatments had already been reimbursed. But, not before two others had been administered. I have no insider knowledge, but it felt like a case of being singled out.

#3: In-Network and Out-of –Network providers are not always clear cut

If your health insurance is like mine, it may cover procedures received in a large medical institution or cancer center. Periodically, I received notices of use for an out-of-network provider even though the provider I saw was in an in-network institution. This in turn would kick-off a deductible and I’d be faced with a medical bill which was unexpected.

Two instances where this happened to me are as follows. A new cancer center employee was not fully registered as an “in-network” provider. She provided medical support to me as part of a team of people in preparation for one of my surgeries. It took a few months to straighten this out between my cancer center and my insurance company. The second instance was a bit harder to sort out. The cancer center had hired an independent contractor and that individual provided medical services to me. This resulted in another surprise and an unexpected medical bill. My cancer center took responsibility for this oversight and ended up writing off her expenses to me. But, it took time and effort to make this happen.

#4: The impact on your insurance when you enter into Long Term Disability is surprising

A book could be written on this subject area, but I’ll cover the highlights. This gets really confusing. Once one has been on long term disability for 2 years, Medicare takes over as your primary health insurance, regardless of your age. Surprise! And, depending on your employer’s supplemental insurance, you may or may not receive adequate healthcare coverage. I’m actually fortunate to have had a reasonable supplemental health insurance plan through the end of 2011. On January 1 2012 my supplemental insurance changed and the premium went up 400%. Sorry, that’s not a typo, 400%. It’s too early in the year to assess the impact of this change to my insurance coverage, but I’m already facing a need for a justification for a medication which in the past needed no prior authorization. The fun (and surprises) never end.

#5: Watch closely for changes which impose maximum reimbursement caps

This would most likely happen during an annual open enrollment period. This happened to me this past year. My prescription drug plan (PDP) which had no cap in the past changed to one with a maximum annual reimbursement cap. This created a lot of anxiety and stress knowing that my oncologist and I had just had an in-depth conversation on my chemotherapy medication and based on the new maximum reimbursement cap, I’d surpass the cap in April and face tens of thousands of dollars in out of pocket expenses. I had some lengthy and productive conversations with my company during the open enrollment period and the month following open enrollment. In the end, the cap was removed from the plan. I don’t know how many people this affected, whether or not my conversations had some impact on this decision to remove the cap, or whether the cap was an honest error on the part of my company to begin with. But, I do feel good about being an informed consumer and believe my discussions had some impact on the removal of this cap.


I realize this is a long post. The above are not the only issues one may face, but they seemed like the top 5 from my perspective. Here are my recommendations:

  • Read and understand your Summary Plan Description (SPD) document
  • Stay aware of medical plan changes that may impact your benefits
  • Be diligent in assessing in-network and out-of-network service providers
  • Keep good records (by date) of your treatment to support billing issues
  • Watch for changes in coverage during open enrollment periods

If you have an insurance story you’d like to share publically, please send it my way. You can either post a comment or find my email address in this blog’s profile area. There are some good patient advocates groups that can help you work through your insurance issues, so you are not alone when the need arises. One such group which helped me recently was the Patient Advocate Foundation (PAF) at

My last and most important piece of advice is to stay healthy and not need your health insurance benefits. Prevention is the best and least costly cure.

Happy and Healthy New Year Everyone,