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Your Cancer Game Plan

Pro Football Hall of Famer Jim Kelly is sharing his personal experience as part of “Your Cancer Game Plan.” This new awareness campaign focuses on tackling the emotional, nutritional and communication needs of those facing cancer. To help address these challenges the campaign aims to provide support and resources, including Kelly’s video on how to remain positive along with healthy recipes for those with head and neck cancer.  Jim’s hope in sharing his experience is to inspire others to act and know their game plan.

Your Cancer Game Plan is a collaboration between U.S. and International industry and patient advocacy groups. Click here for further information.



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My Belly Has Two Buttons

meikeleBy Meikele Lee, author of the children’s book “My Belly has Two Buttons” and lives in Helena, Mt.  She is a wife and mother to 3 amazing children, one of whom has a feeding tube.  She has been in cosmetology for over 10 years, but became passionate about blogging when her youngest child’s oral aversions became life threatening.  She used blogging to try and understand her son’s condition and how he can relate to others with or without a feeding tube, and to help educate the public about these life saving devices. continue reading →



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A Moveable Feast

004-1It’s hard to know which events inform our reality and which only mark the passing of time.

Waking up in the hospital with a brand new feeding tube on board was clearly one of the former.

But there I was.

I had resisted repeated proposals from medical professionals to have a g-tube inserted. They warned of the worsening dysphagia I faced due to the effects of radiation for throat cancer I’d had years earlier.

Finally, home alone for a week – my wife visiting family in Florida – I faced a crisis. My esophagus closed down for business altogether. I couldn’t swallow anything, and by day 4, I had lost about 15 pounds and was terribly weak. So it was off to the ER, and then the OR, for the g-tube.

As I worked my way through the post-op haze, a well-meaning speech therapist visited and informed me that I was lucky indeed. Now, she said, I could get all my nutrition through this feeding tube. The product to be consumed, something like Ensure, would be delivered to my door, and I probably wouldn’t even have to pay for it!

Wow, I thought. Even with the dysphagia, I had looked forward to meals in restaurants, family dinners at home, milkshakes, ice cream.   Now, all of this would be accomplished through a tube they’d installed in my stomach.

A moveable feast indeed!

For the next few days in the hospital, I was fed by the “gravity method,” with the nurses doing the work.   When I got home, like most of us, I undertook “bolus feeding” (also known as gravity syringe feeding, the most common home feeding technique), with some trepidation. But I proceeded with an enormous sense of discipline in each and every step, and with lots of assistance from my wife.

Also, like most of us, I gradually started to handle the protocol myself, becoming quite adept at bolus feeding, incorporating it more smoothly into my daily life.

As I saw it, I had two choices. Either sit around and feel sorry for myself or embrace this and get on with it.

I have a wife, two grown children, four grandchildren, and a cat – all of whom from time to time count on me for something. And I have a fairly busy law practice to maintain.

I had no choice but to embrace this new situation.

The first challenge was at my health club where I worried about the appearance of my noticeable apparatus as I showered and dressed with my friends. For a while I tried to partially mask the stoma and the apparatus using various vapor barriers, finally trying some industrial-strength Saran wrap.

Then I threw caution (and the Saran wrap) to the wind. Now I wear the apparatus quite nonchalantly. I think it looks good in the shower, and I frequently sit at the table in our lounge area to ingest a can or two of Jevity when I have an afternoon off.

Next, people kept asking me to meet them for lunch, or for coffee, which meant going to a café or restaurant. Both personally and professionally, I had a strong inclination to continue to engage in these activities.

Shortly after deciding I would have to get on with things, I designed a stick figure man – a happy fellow with his g-tube and a can of Jevity attached.

I used the stick figure to sign notes to everybody around the house. I liked it and it became my signature. I named it Tubenmann, German for “tube man”.

Inspired, I took a Polo-type sweatshirt of mine to a seamstress in town and had her embroider my stick man as a logo on the front of it. I also had her insert a zipper on the shirt, over the spot where my tube is.   This shirt design, I thought, would help me to once again fit in at cafes and restaurants by allowing me to access my Jevity or even coffee – right there – without calling undue attention to myself.

And so I did.

My first venture with my newly configured shirt was at a coffee shop here in Walnut Creek where I met an old friend from San Francisco.

tom

We chose a table by the window, acquired our beverages, and I surreptitiously inserted a syringe into the feeding tube, which I’d accessed through the zipper on the front of my shirt. Then, just holding the syringe there in front of me, I was able to enjoy my coffee, calling little or no attention at all to myself.

This was an altogether fine experience, one I have repeated often since.

I wore the shirt on visits to my speech therapist, the talented Amy Lesico. And I wore it on visits to U.C. Davis professor, Dr. Peter Belafsky, as well as to my local doctors, Sam Sundar and David Lin. Together with their staffs, they unanimously applauded my shirt, calling it very cool.

Their clearly honest and heartwarming enthusiasm came as a complete surprise to me.

It seemed that something I had put together to mostly to entertain myself and in some way facilitate socializing for me had taken on a life of its own.

They are met with amusement, interest, enthusiasm, or most often, the garment is completely ignored as I go about my business wherever I happen to be.

I was fortunate enough to discuss all this with Ed Steger at NFOSD, and he suggested this article. So here it is. A brief account of how I, just one person, am dealing with the g-tube which I understand I will have for quite a long time.

tubenmann-t-shirt

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I did not stop just with a few shirts for myself. I have gone on to make available a men’s and a women’s long sleeve polo shirt fitted with my useful modification. Visit www.tubenmann.com to see for yourselves and for ordering.

But remember:

“It’s not just the shirt, it’s the attitude.”

Tom Dawson, Tubenmann

 



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Xerostomia = Dry Mouth

Byline: Jennifer Kurtz is a Speech Language Pathologist and stage IV oral cancer survivor practicing at Overlake Medical Center near Seattle, Washington. Her experience has given her an unexpected, yet unique, perspective on the clinician’s role in the management of the Head & Neck Cancer population and has motivated her to advocate for aggressive, collaborative, multi-disciplinary care of all patients across a broad continuum.


Xerostomia describes the subjective sensation of oral dryness and is commonly called “dry mouth.” The typical causes of dry mouth include medications, radiotherapy to the head and neck for cancer treatment, and systemic diseases.

mouth

Xerostomia can have a profound, negative impact on quality of life. The lack of salivary production impacts the ability to eat, sleep, speak, and swallow (Lew & Smith, 2007). Adequate salivary flow allows us to speak clearly without our lips sticking to our teeth and to mix saliva with food when we chew to enable easy transfer through the oral cavity as we swallow. Inadequate salivary function can create a number of complications such as: continue reading →



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Deciphering Dysphagia

Byline: Tiffany Turner, MS, CCC-SLP, Owner, Swallowing and Neurological Rehabilitation, www.tulsasnr.com. Tiffany founded a dysphagia focused outpatient center in 2014 to serve the northeastern Oklahoma region and fill a gap in her community, as she feels adult speech pathology services are often misunderstood and underutilized. She is also an author and publishes resources for other SLPs to use with their patients which have been downloaded by over 2,000 speech-language pathologists worldwide.


Dysphagia, or difficulty swallowing, affects up to 15 million adults in the United States. According to past publications, 1 in 25 people will experience some form of dysphagia in their lifetime, including 22% of those age 50 and older (ASHA, 2008; Bhattacharyya, 2014). People at the greatest risk for swallowing impairments include individuals who have had strokes, those with neurological conditions (such Parkinson’s disease), survivors of head and neck cancer, and the elderly. Despite the significant prevalence of dysphagia, this medical condition is often neglected, and many sufferers are never properly diagnosed or treated.

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