Thursday, May 31, 2012

Tumor tissue donation: Should you consent?

Hi,

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:

http://www2.mdanderson.org/cancerwise/2012/05/tumor-tissue-donation-should-you-consent.html

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.

Regards,
Ed Steger

Tuesday, May 22, 2012

Speech Impediment Simulation

Background

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.

Simulation

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).

Conclusion

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),
Ed
                                                   .