Life as a "Lary"

At my hospital I have the opportunity to work with the total laryngectomy community. You can look at my previous post here about TEP placements! There have been a lot of questions lately on private SLP community groups regarding working with individuals post total laryngectomy. Therefore, I decided that this month’s blog post should be a little unique. William Cross, an administrator of the WebWhisperers Facebook group and total laryngectomy, agreed for an interview. I truly believe that a patient’s perspective is invaluable. I have learned so much from Mr. Cross in his posts on the WebWhispers page. He is an invaluable mentor to so many individuals. I hope all of you enjoy his interview and wisdom he is sharing with all of us!

Mr. Cross, thank you for agreeing to this interview. Could you tell me about your laryngectomy journey?

I was losing weight and I had COPD and GERD. I actually had LPR, as it went to my larynx. If I didn’t have the COPD or LPR they should have seen I had every symptom of throat cancer. My wife knew that I had throat cancer even though the physicians didn’t. I was originally sent to have blood tests and CT scans. My GP even sent me to an Oncologist who said, “You do not have Cancer.” He was a little full of himself as I had cancer when I saw him.

My GP doctor left and I chose another GP doctor who was outstanding. He had just finished his internship and agreed to take me on. We were not sure where the blood was coming from. It could have been the esophagus, stomach, or lungs. We decided to go my pulmonologist, as I was coughing up a lot of blood and getting worse. I took photos with my phone to show the doctor so he could see what I was saying that it was not just a trace of blood.

We found that there was a tumor in my supraglottic and that it was touching my left vocal cord. It was 3 cm x 2.5 cm. The pulmonologist was afraid to attempt a biopsy. He was afraid he could not stop the bleeding, so he did a brushing and took photos. When I woke up I wanted to know how my lungs were. I was told he was afraid I had cancer and gave me the photos. 

I did my research and I wanted to go to Stanford. I found the hospital and the doctor I wanted to treat me. I was told I would not survive a surgery or radiation because of my lungs. The physician told me they could remove my larynx. Breathing through my neck was my only option to live. It was not a hard choice to make… I like breathing!

I am so sorry for the difficulty you had getting the correct diagnosis. I am sure that was emotionally and physically exhausting. I know many individuals who have had similar experiences. Since your surgery, what has been the biggest struggle of being a total laryngectomy?

Acceptance, which I did before the surgery. Then even with all my research I had no idea what it really was going to be. Even today my wife doesn’t know all I go through. For example, it takes twice as long to eat. My family is done eating and my food is cold long before I am done. I also had a neck dissection on both sides as a precaution. I am glad we had that done but everyday I hurt. Going into surgery I was T4; N2c; M0; I came out 8 hours later T3; N0; M0; and woke up in my room, not ICU. My neck is numb on the left side from my ear to the center of my chin and always will be. I wish the right side would have stayed numb as well. I’ll take pain pills and muscle relaxers the rest of my life. I also have bone spurs in my neck that press on the nerves and now they hit when I swallow. You just can’t explain what it is like being cut from ear to ear.

Losing my voice has been devastating; your voice is who you are. I get up and before I try to voice I block my stoma and see if air will go through my TEP. Then I squirt saline into my stoma and cough so hard. I have fractured a rib and turn red from my chest to my head. Then you get the 6” tweezers and put then into your neck and pick all the mucus on the TEP and try not to cause bleeding. Now you clean the mirror again and start your day. This takes at least one hour or longer as you have to stick a brush in the TEP to clean the inside. I have the largest 22.5fr, which is 7.5mm and has an opening that my air goes through of 5.5 mm. Like a straw. No one really understands you except for another laryngectomee. There is no way you can. I had a co-worker say, “Wow, I can imagine what that must be like.” Now he meant well. So I said, “how about tonight when you go home you don’t speak one word. Just write everything. Do this for just two hours, and you will still have no Idea, but it’s a start.”

            One of the worst aspects of being a total laryngectomy is how the people in the medical know how to teat you. They don’t even know how to get oxygen to me. I have been refused 5 times in the ER. Also when I had knee surgery. I had to loan my parts to the Anesthesiologist to use. She had no idea how to hook me up. The nurse after said to just breath deep. This I have known for 35 years. She told me this when she refused oxygen and I was at 72% O2 stat. Now, I interview all my doctors. They have to agree to take all my conditions and agree I am involved in decisions. If so, I will give them full trust and do what they suggest. I also have to feel they are right for me and do listen. So many do not listen, they just talk.

Although there are many struggles from being a total laryngectomy you have become a figurehead in the laryngectomy community and inspire so many with your positive outlook. Have you found positive aspects of being a laryngectomy?

The main one is you are still alive and have a second chance. I breathe better. My lung doctor can’t explain it but I no longer am recommended to have a lung reduction surgery. They won’t have to remove 20-30% of each lung. I wear an HME (Heat Moisture Exchanger) and have not had a cold since the surgery. There is good, but you really have to look for it but it is there. I ride a bicycle again and haven’t in 20 years. I now ride 8 ~ 18 miles a day. I did 3100 miles the year before. I only did 2400 last year as I tore my knee and had to have surgery. I now have over 5900 miles and had to get new tires.

Let’s talk about the WebWhispers. How did you come to be involved with this organization?

I was told about them from my SLP, who is amazing. I did not go there or to the Cancer Head & Neck group for months. When I went to the cancer H&N group, which is a wonderful group, I realized I had what is called “survivors guilt.” Why did I survive and only had surgery? People in the group had to go through Chemo and Radiation and I didn’t. Several told me in the group that the surgery took my voice, so I went through a lot too.

I have been with WebWhispers since January of 2014. I joined the WebWhispers but didn’t post as it was only the website and email. They had a Forum on the website. It took me several months where I would leave and go back. If I asked a question, I didn’t get an answer. I got something like “go to the library we have that there.” So I stopped. I went back and did post on the forum and several responded. By this time, I had found out how to do things we were told we can’t do such as blowing out candles on a cake, whistling, or completing a lung function test. I shared how I did these things with members and I was hooked helping other live better. them.

There were several members that really got to me and made me stay. Pat Sanders who has passed, Logan was the first one. He and I talked almost every night. He got me to become Admin on the Facebook Forum. Then a very special man who is Mike. On the Facebook Group he goes by Shmuel. He has become a mentor and is like my Father was. His word is everything, his bond. He got me involved even more and also in the Facebook Group. Now I am the Forum host also.

I am a member of the WebWhispers Facebook group and find it invaluable. I love the collaboration and support amongst the members. Personally, as a speech-language pathologist, I learn a lot from the members. I also find that the group keeps me very grounded when I am treating my patients. I recommend every laryngectomy to join the group! How do people access this page and who is the page open for?

Yes, we do have a Facebook Page, which is just like the group, and you can post. We also have a WebWhispers Facebook Group. It is listed as Secret. Now this was done with much thought. In a Closed group, you can go and see every member they have and even contact them. With ours being Secret it is harder to find and we have to work much harder that way. It was done for the security of every member. You can’t see who is a member unless you are one. You will never find what they post. With the Head & Neck which was ACS I Googled my question and it came up on Google. I left and felt very violated, as they never said it could happen. We have members who poor out their soul. All the scary feelings they have, because they know it is safe to. Many will talk about things they won’t even tell their family. 

The WebWhispers is open to all Throat Cancer, Laryngectomee, Their Caregivers (they need the support as well and even more at times), SLP’s (who we would not have a voice without them), and even ENT Doctors. To join the Facebook Group you just need to send a Friend request as well as a message, this is the only way we can add members. The message should let us know if they are a Lary or caregiver with a working email. If they are a caregiver we like to know to whom they are a caregiver for. This information can be sent to one of our administrators:

William Cross, [william.cross.752], John Isler or Anne Rinaldi Ammenti via Facebook. We then contact them and make sure they are who they say they are.

One of the topics that I notice pretty frequently on the Facebook group are the myths that laryngectomees are told before or after their procedure. What are the top myths of being a laryngectomy?

Wow, there are so many. To start, “you can’t smell.” Your lungs can smell and have order receptors in them. Now they won’t detect all orders, but I sure can smell a fireplace burning wood. I can also smell sulfur from the fireworks. You can also smell with your nose if you get air through it. In order to do this you can do a yawn but keep your lips closed and it will draw in air.

Another myth is that “you can’t blow out the candles.” You use cheek pressure and you can blow out one. If you have a TEP, you can blow candles out with you air from your lungs. You can also blow a tissue off a table. They say, “you can’t whistle if you are a neck breather.” I have a TEP and can talk and whistle. It took two months for me to relearn but I can do it. I can smell and blow my nose with a device that I made. It goes over my stoma and has a tube that goes to my mouth. Some people will say that you “can’t” but when I find something that is challenging I say “I can’t YET.”

Personally working with individuals who have undergone a total laryngectomy I am constantly wondering what I can do better for this population. So, what could we, as speech-language pathologists and medical professionals, do better to improve the care for individuals who have had a laryngectomy?

Warn the person that depression is normal to have some, PTSD or PTS or anxiety. Warn them that many medical professionals will have difficulty understanding you and your condition. You must learn all you can and be prepared to need to educate the doctor or nurse. You must learn how to get oxygen to us and to take a stand when you know they are wrong.

Many SLP’s never get that extended training to work with a Lary and a TEP. My SLP is 215 miles away from where I live. There is a SLP closer to me, only 50 miles away. She works in a rehab Hospital and is very nice but can’t order any TEP’s. If I need to go smaller she can’t do it. I have to buy it first and bring it. Although she is so nice she can’t really help me. I also think that the SLP needs to be with an ENT doctor who has the parts. This is what makes it so hard on us. I am disabled with COPD and now 66 years old. I have to drive 430 miles and 12 to 14 hours round trip for a TEP change.

It sounds like if SLPs had more extensive training in graduate school and having better access to ordering TEPs that it would significantly help in your situation. I also agree that the relationship between the speech-language pathologist and patient must be very strong and honest to help with the transition of being a total laryngectomy. Can you tell us about a positive experience you have had with a speech-language pathologist or your speech-language pathologist?

First, all (speech-language pathologists) I have met, all have the same thing in common, they want to help us. They truly care about a person who had a laryngectomy. I have called my SLP and emailed her the night before that I am leaking really bad and aspirating. I have to drive 215 miles to her, which will take me four hours. She just says you just get here and I will get you in. She has stayed over and on several times seen me on her lunch hour. I don’t know if she really got to eat but I was her only concern.

Once, I had a growth around my puncture and all my doctors were watching it. All said it looked ok and really was. I went up and had my TEP changed and headed home. I had gone 60 miles and the TEP and growth both dropped down and was blocking my airway by 80% or more. I stopped and called her cell phone as they were going to close soon. She just said, “you get back here and I will keep everyone here.” I got back and she had kept the full team. The ENT Doctor/surgeon and her and a few other doctors and staff to assist. They did emergency surgery right there and removed the growth and fixed me up, and I drove home. I do not know of any other place that would do that. They would say come back and go to the ER and then admit me and the next day do what needed to be done. I think that counts as positive and an even exceptional experience!

Wow, you definitely work with an exceptional speech-language pathologist and ENT team! It sounds like they are a seasoned team. We may have some newer SLPs and laryngectomees reading this blog post. Are there any resources would you recommend for them?

I would recommend WebWhispers and the Facebook group because we are open 24/7 and have members all around the world. Some one will always be there. We have an Admin on the East Coast who get up early, I am West Coast and stay up late. I go to bed when they get up many times. I get the UK, and Australia, and India and Philippines and New Zealand. In the day I have the USA and Canada. I have been told after I did one of my, “Did you Know” posts that they have learned more in this group in three months than his seven years as a Lary. Many will post something they could look up or just Google. I won’t tell them that. I was told that once and didn’t like it. I will get the answer for them and if I need to Google it I will. Sometimes I will answer and put a link as to why I answered it that way. This is their life they are asking about. I will tell them I won’t sugarcoat it just so it sounds better. I will always tell them the truth and facts. Now there are many other Facebook groups and are good but we give support and educate them better than any one. Now I am a bit biased about our group but that was some of the feedback that members have told me. I would also recommend a local group. These groups can be hard to find but can really help!

I love how supportive the WebWhispers are to all of the members. In my mid-sized town of Springfield, MO we do not have a laryngectomy club however this is a goal that myself and the SLP at our other major hospital are collaborating on to make happen. I also wanted to put out a little plug for your youtube.com page (https://www.youtube.com/user/wmcross51). These videos are so informative! I plan to make this as part of our resources for our new laryngectomees.

To wrap up our interview today, I wanted to ask what would be the top items that you would recommend for any laryngectomy to have with them? I have a few things that I recommend but I always like to see if I can update my list for patients.

At all times I would carry a LED penlight and a 10 pack of tissue or two packs. You will cough. Humor is also required. Now if you go out of town, I recommend a “Go Bag.” That is a bag that will have a mirror, tweezers, saline bullets (about 10 that are 3 ml in size). The bag does not have to be big. You can get them at Walgreen's or CVS. The Walgreen's is the best as the bottom part is just open and the top is partitioned. If you use a TEP you will use a adhesive baseplate or Lary button or tube. If you use the baseplates have at least 5 and 10 HME’s. Tac remover and Tac adhesive, a brush for the TEP. This is minimum. I do recommend having a Trach mask, 12” 22 mm medical tubing and two 22 mm adapters. A Filter that is 22 mm on one side and 25 mm tapering on the other, and an 8 oz. bottle of water to clean the brush if needed, and a small LED flashlight [about 75 - 120 lumens. They are only about $3.00 that takes AAA batteries. You can get them anywhere. You hope you don’t need the medical supplies and every Hospital has them but just don’t know how to use them. You can get all the medical parts for $10.00 and freight which wont be much. What they sell for $0.65 I paid $7.00 with insurance paying 80%. I recommend this website: http://www.vitalitymedical.com/tracheostomy.html?&limit=40&p=6. 

Mr. Cross it has been a pleasure getting to know you more and I wanted to thank you for all of your insight and all of the support you provide to laryngectomees and to speech-language pathologists!