As many of you know, I had a laryngectomy in October 2015 at the University of Chicago Medical Center. That means that my larynx was cancerous and had to be removed. This caused me to lose my voice and left me with a hole in the base of my throat. A prosthesis was inserted to help me speak. I need to hold a finger over the hole and take in air, speak and repeat this process to complete a sentence. My volume is low, and I have trouble being heard on the telephone. Part of this operation is the removal of the top of my esophagus, which causes mucus to build up in my throat that must be suctioned out. Food takes a while to be processed since it sits in my throat for a time. I cannot talk while I am having a meal. If I am in an area where there is loud noise, such as a restaurant with music playing or somewhere that people are talking loudly, I cannot be heard.
So, why am I telling you this? The reason is that a few weeks ago, my wife, Nancy (who is my caregiver), and I attended an all-day symposium at St. Xavier University (SXU). It lasted from 8:30 a.m. to 4 p.m. and was presented by Miriam Alfano, of the Ludden Speech and Language Clinic at SXU, and Lewis Trammell, founder of Lary’s Speakeasy, a laryngectomy support group, which is a 501c3 organization that provides support to people such as myself and medical supplies to those of us in need. The symposium was held at no charge for attendees. This was the third annual symposium and was presented by medical staff that presented information on what caused our problem, speech therapists who explained what we are going through, vendors and the products they have to help us, and a speaker on the quality of our life. Those in attendance were medical professionals, speech therapists, speech students and larynx patients.This was the second symposium that Nancy and I attended, the first being last year. On the way home from that one, we both had the same thought—we got answers to questions that we didn’t know we had.
As an example of what Lary’s Speakeasy does, when I was having trouble with my prosthesis, I was prescribed a liquid that I had to use to keep the flange in the prosthesis free from getting stuck, which would prevent me from speaking. I put some on the end of a brush, clean the flange and then gargle with some of the liquid. It works, and now I can speak. The bad part is that this liquid had to be purchased at a pharmacy with a medical prescription, and the cost is $55 a pint, after my medical discounts. Trammell, through a special program, gets me the liquid at $4 a pint. It’s quite a difference in cost, especially for a 77-year-old man living on Social Security.
Lary’s Speakeasy sponsors support groups that have monthly meetings for larynx patients. I attend two of them, one at SXU and one at Illinois Masonic Hospital. Attendees usually leave a support group feeling good and cannot wait for the next meeting. It provides a space where we can talk of things that we cannot talk of in public or feel embarrassed when we are with regular people. If you know anybody who is a cancer patient or was a cancer patient, encourage him or her to participate in a support group. They will thank you for it. So, the reason for this rambling is that Lary’s Speakeasy can use funds. Any amount is acceptable. You can make a donation either by check or by PayPal. If you are donating by check, please put Matt Taylor on the memo line so that Trammell will know why a donation was sent, and he can contact me so I can send a thank-you note to you.
