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 (http://hncancer.blogspot.com/2010/12/swallowing-difficulties.html). 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 (http://swallowingdisorderfoundation.com/) developed a documentary on swallowing disorders. Here's a link to that documentary.

http://swallowingdisorderfoundation.com/swallow-a-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.

Ed

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.
Ed

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.

http://www2.mdanderson.org/cancerwise/2012/02/tools-to-manage-ongoing-care.html

Enjoy,
Ed

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,

Ed

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.

http://www.chron.com/news/houston-texas/article/Texas-doctors-lead-open-notes-movement-2575183.php

Enjoy.

Ed

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.

Conclusion

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 www.patientadvocate.org.

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,

Ed

December 13 2011 - My 5 Year Cancerversary

Happy Holidays.

Each year on December 13th I write a blog entry that is a reflection of a nadir in my cancer journey that took place on that date, now 5 years ago today. This year I had the privilege of sharing my cancer anniversary story in the University of Texas M D Anderson Cancer Center blog, Cancerwise. As such, please click on the link below to read today's blog titled, "It's Holiday Time - The Gift of Life" appearing in Cancerwise:

http://www2.mdanderson.org/cancerwise/2011/12/its-holiday-time-the-gift-of-life.html#more

In addition, for ease of reference I am including a link to each prior year Cancerversary entry from my blog.

2010
http://hncancer.blogspot.com/2010/12/december-13-2010-cancerversary-3.html

2009
http://hncancer.blogspot.com/2009/12/december-13-2009.html

2008
http://hncancer.blogspot.com/2008/12/december-13-2008.html

2007
http://hncancer.blogspot.com/2007/12/december-13-2007.html

Lastly, for those who would rather read my entry here without going out to the Cancerwise blog, here it is. But, it looks much nicer on the M D Anderson site.

It's Holiday Time: The Gift of Life

                                  

By Cancerwise Blogger on December 13, 2011 8:00 AM | Comments (0)

By Ed Steger

Ed Steger was diagnosed with head and neck cancer in 2005. After 36 radiation treatments, 2 years in palliative care and 5 surgeries he is now in remission. He blogs about living with head and neck cancer at www.hncancer.blogspot.com.

In order to give back to the medical team that saved him, Ed is currently a SPORE Patient Research Advocate at MD Anderson.

Today, Dec. 13, 2011, is my five-year cancerversary. I was originally diagnosed in April, at age 53, with stage III/IV head and neck cancer at MD Anderson Cancer Center. Throughout my cancer journey, the largest setback came five years ago today. Here's my story.

Difficult journey
Between April 2005 and December 2006, I had 36 IMRT radiation treatments, Taxol chemotherapy and four surgeries. One surgery that I often refer to as the "salvage surgery" lasted 12 hours and was followed by two terrifying days in the ICU and a week longer stay in the hospital.

At the time, it was either this surgical procedure or getting my affairs in order. After careful deliberation, driven largely by wanting to see my 12-year-old daughter grow up along with strong encouragement and support from my family, I chose the salvage surgery that took place on July 12, 2006.

It was an incredibly difficult surgery involving the removal of my left side jaw bone, a large section on my upper esophagus, part of my soft palate and a piece of my tongue.

If that wasn't enough, my tibia bone was cut from my leg to replace the portion of my jaw that was removed, necessitating a skin graft on the tibia area.

I recovered from this ordeal relatively quickly. By October, through a lot of determined, physical effort, I had the tracheotomy apparatus and feeding tube removed. By December, my life was getting back to normal.

Just six months after this major surgery, I was actually feeling great. To test myself, I made a trip out West to visit friends and enjoyed a round of golf on the beautiful Monterrey, California peninsula.

There was life after surgery.

Visit with my surgeon changed everything
A CT scan followed by a clinic visit with my surgeon on Dec. 13, 2006, changed all that. The scan revealed five inoperable hot spots. Once again, I was faced with getting my affairs in order. With help from MD Anderson's Palliative Care Unit, I prepared to let go of life and begin the process of dying.

But, as one who believes in having a Plan B, I also visited my MD Anderson oncologist.

One week later, I began an intensive chemotherapy regimen. During the next eight months, I had the proverbial kitchen sink of chemotherapy agents thrown at me: Cetuximab, Docetaxel, Cisplatin, Avastin, Tarceva, more Taxol, Carboplatin and GEMZAR.

It may sound random, but it wasn't. My oncologist and surgeon were monitoring me carefully and modifying my treatment based on my responses. Ten months later and after setbacks that required two relatively minor surgeries, I was declared as having no evidence of disease (NED).

The five inoperable hot spots literally melted away. That was in October 2007, more than four years ago! Two years ago, I was reclassified as being in remission.

So, this holiday season, I have the gift of life.

I was able to see my daughter graduate from high school last May and begin the next stage of her life as a beautiful young woman and a college freshman.

It has been hard, but it's so worth it.

I intend to keep moving forward and giving back, in my own unique way, to the community who made it possible for me to be here today. I am so very grateful for the untiring efforts of my medical team at MD Anderson.

For all those who have participated with me in this journey, including physicians, researchers, support staff and my spouse, family and friends, I wish you a happy holiday season and thank you with all that I have for this generous and unbelievable gift.