A diagnosis of cancer is such skull-fuckery, that it is not easy to put into words.
If you noticed my Facebook posts during the entire ordeal, I only presented the facts with mine, never really any emotional posts.
Remember that time period, April-May 2016, my oldest son, Justin, died.
Then, I got my biopsy results back revealing that I had a supraglottal squamous cell sarcoma on my right vocal cord, all in under two weeks.
Major brain-fuck/major heart-stab, but, hey, gotta deal, or you cannot get thru it.
So here it is: For a little over a year now, I have been battling another cancer. This is a battle that I started fighting 6 years ago in 2016, and thought I won. Then, by the end of 2017, it was back and I had to deal with it again.
In Jan 2018, I had a complete laryngectomy. I lost my voice, and with it, my ability to really influence people as I had always been told I had a "way with words".
And I noticed that people began to treat me differently. A slight change in my body and discrimination began. A video illustrating a laryngectomy
An electrolarynx gave me a voice for the next few months. I could speak without having to stop to breathe. lol By the summer I was vocalizing via my TEP(tracheoesophageal puncture). My SLP(speech therapist) says I sound like a deeper voiced Johnny Cash now, which I don't really believe, but it is nice to be able to communicate sans vocal cords.
A couple of weeks after the laryngectomy, a fistula developed. To be precise, an esophagocutaneous fistula opened a few inches above my stoma. If I drank water or any fluids, it would leak out of the fistula and, if i was lucky, down the skin of my neck. Or, at worst, into my stoma.
⇦ ⇧ The dreaded
Esophagocutaneous fistula The yellow tube was for feeding through the TEP Because I had radiation before the laryngectomy, I was lucky to develop a fantastic fistula above my stoma that grew and grew. My neck dissection for the laryngectomy failed to heal internally. It was like a zipper busting and unzipping inside my throat. In 6 weeks it was almost twice as big as my stoma. So i got the pectoral flap repair.
Facebook post of Feb 2018
"Looks like the surgery to close the fistula will be on the 22nd of Feb Then another 7 to 10 days in hospital to recover. Then, if all goes well, real food again!!! I have been obsessing over food for sooooo long. Everything makes me think of food. I've been planning out various delectable meals--in extensive, elaborate, & delicious detail--many, many times each day--sometimes multiple times
per hour."
It was a 14 hour surgery. Another full neck dissection, freeing of the pectoral flap, then reconstruction of the oropharyngeal area and neck. Two surgical teams working on me for the two procedures.
Because I had one really bad breakthrough pain episode after the laryngectomy, I learned that IV morphine took about a hour to kick in. I mentioned this to the anesthesiologist prior to the pec flap. He told me not to worry, that they had something called dilaudid and he guaranteed I would feel it! Boy howdy, that shit was wonderful! It definitely handled the worst of the pain and acted extremely fast! Luckily, he entered it into my chart so after all my surgeries, that was what I was given for pain management.
I lost the use of my left pectoral muscle, got a nice big ass scar, and lost much of the use of my left arm. The muscle was detached at the bottom and sides, then rerouted underneath my skin, over my clavicle, to reconstruct the neck area in order to close the fistula. A strip of chest skin was used to rebuild the esophagus.
This means I have hair growing in my throat now. The hair is 2-3" long and will sometimes slip through the center valve and cause leaks! I had mentioned this to my SLP and I'm not sure she believed me. When she did the laryngoscopy that discovered the sarcoma on the base of my tongue in 2021, she was amazed by the luxurious locks flowing in a sea of saliva! She took the photo you will find below in order to show to her students in the SLP(Speech-Language Pathology) program.
Due to the pec flap being above the stoma, it would cause an occlusion of stoma without the larytube in place. The occlusion normally occurred if I was reading and tilting my head downward. With this last surgery, with the lateral neck reconstruction using the latissimus dorsi flap, the stoma occlusion is not much of an issue anymore.
A PEG tube was installed to enable me to partake nutrition while the neck structures healed. Of all the procedures I've had done since 2018, waking up from the PEG surgery was the worst pain I have dealt with. On a scale of 1 to 10, it was a 100! My god, it had me in tears and silently screaming! For some reason, instead of dilaudid, I was given morphine. It did absolutely nothing for the pain and I suffered severely while in recovery. Only when I was taken back to my room and rang the nurse did the pain ease.
Ended up using the PEG for nutrition for almost four months. The tube was in five months total. The inability to eat normally was an excruciatingly The removal procedure consists of the doctor grasping it close to the abdominal wall, and then giving it a swift yank!
These photos are while in the hospital after the pectoral flap fistula repair. ⇧
"Accursed creator! Why did you form a monster so hideous that even you turned from me in disgust? God, in pity, made man beautiful and alluring, after his own image; but my form is a filthy type of yours, more horrid even from the very resemlance. Satan had his companions, fellow-devils, to admire and encourage him; but I am solitary and abhorred." - Frankenstein's Monster ⇧ (Pectoral flap fistula repair)
― Mary Wollstonecraft Shelley,
Frankenstein, or The Modern Prometheus
Left--Pectoral flap healed(blue/white thing in stoma is my speech valve)
Right--Hairy pharynx
Funny thing is how the body reacts to major trauma like surgery. Surgery is like being in a major accident. After both the laryngectomy and the pectoral flap fistula repair, my body was worn out. I came home and less than two days later was admitted to a local hospital. The first night home I suffered from horrible diarrhea. I stayed in or close to the toilet all night and most of the following day. That eased up around three in the afternoon. At 5pm, I started projectile vomiting. It was all water. This continued throughout the evening and night. About 4am, I awakened Nicholas and had him drive me to the ER in Loris. I was examined and they immediately admitted me. The diagnosis was "failure to thrive". Before I was discharged from MUSC, they weighed me and I was 172lbs. When I was admitted, two days later, I was 146lbs! The hospitalist who was my primary physician during my stay said that due to the surgical trauma, my body had gone into shock and had started to shut down. They rehydrated me, got the nausea under control. Then started the process of bringing me back to a stable state. I stayed in the hospital for another 5 days before I was allowed to return home.
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