Posts by Karen Cruz

Rachel Garcia said:My dad passed away today. It’s been five months since his diagnosis. He didn't suffer too much; he just drifted off to sleep...

I am so incredibly sorry for your loss.

hello
I'm looking at your situation and seeing my own future playing out pretty soon. My mom had surgery two days ago at Chicago General—a total laryngectomy. From what I gather, they’re using some kind of tissue graft to replace her tongue, though they haven't really explained where it comes from. They aren't telling us much, and visitors are strictly off-limits. Mom is doing pretty poorly down in New Orleans; we can only call her, and that's about it.
So, if she manages to get her swallowing reflex back, will she be able to eat on her own? My understanding is that her trachea will stay open permanently for breathing, and I'm still a bit fuzzy on how the tube feeding works. Does anyone know what the recovery looks like or how long we'll need hospital support? Honestly, I have no clue where to even start looking for info on what happens once she's discharged, or who is going to teach us how to manage everything. Thanks.

Eric Newman75 said:I was on a nasogastric tube while my mouth was still swollen shut after my surgery. I had a tracheostomy tube in my neck to breathe. The surgeon actually stitched the hole closed right there on me. I wanted to head home, but since it hadn't healed yet, I had to talk him into doing it. There was a risk he might hit an artery with the needle, which was a gamble I didn't want to force on him, so we did the whole thing without any painkillers. He pulled the tube out through my nose a few days later once he was sure my swallowing reflex was back. It wasn't painful, just uncomfortable. If I hadn't been able to swallow, he would've put it right back in.

The real question is whether your dad can swallow. If he can't, is it because the nerves are trashed or just because his mouth and throat are too sore? If that reflex is gone, the tube becomes a permanent fixture. That's incredibly hard to relearn when nerve damage is involved. I've seen people whose eyes practically popped out from coughing violently just after swallowing a few drops of saline. I didn't have it quite that bad, though; I figured out a workaround. I used Octenidol—it's a rinse—to sip from the trial bottle they gave me. That liquid was a lifesaver. I tried to mentally track the path of saliva down my tongue, but everything felt normal. "Swallowing is just swallowing," I thought. No big deal. So, I decided to take a little sip of the Octenidol. It isn't meant for drinking—you're supposed to spit it out after rinsing—but it had mint in it, which burns a bit and then cools everything down when you follow it with water. It actually helped me figure out how to tilt my head and move my tongue to find which part of my throat was still working. Armed with that little bit of intel, I could tackle a third of a spoonful of soup. Just to start. The nurse wasn't exactly sharing my optimism; she dropped the plate in front of me and backed off about ten feet immediately. But hey, it went okay. Bit by bit, I finished it all, even if it felt like an eternity. 😁

As for the syringes and tubes, there’s no secret trick to it. You have to keep the syringe above the nose level because of the pressure. If you drop the tip of the syringe below that line, the fluid is just going to back up and spill everywhere. Feeding itself isn't painful, it's just agonizingly slow. The nurses were practically crossing themselves when they saw my technique—honestly, I would have mixed the soup, the puree, and the juice into one big mess, stirred it up, and just shoveled it in. When you lose your sense of taste—which you do, because your mouth isn't really part of the equation anymore—it doesn't matter how it looks. The key is eating slowly and finishing with water. It helps with heartburn and flushes out the tube and syringe. Keep in mind, they didn't just take my tongue; they basically took my arm too, so maneuvering the syringe was a massive pain. If his nerves are intact, your dad will probably be able to feed himself. Give him the chance; let him take charge of himself and find that will to live. I stepped up because I realized the nurses were totally overwhelmed; they couldn't keep up with everyone's feeding. So, I just did it myself. Whatever, they were impressed. And honestly, a little relieved. They see a lot of things, but they really appreciate patients who don't just give up.🙂

hello everyone, especially to Angela Wright who is always so caring when answering questions. That’s actually what prompted me to jump in here and ask for advice, because I’m just wandering through the dark corners of the internet feeling completely lost. It’s about my mom. She’s 68. Up until three months ago, she was relatively healthy. Then came the coughing, then this weird mucus in her throat, then the pain, and we started the whole testing process. In New Orleans, things move at a snail's pace when cancer is involved. We found out about thirty days ago. Honestly, I still don't fully grasp what we're dealing with; the paperwork says squamous cell carcinoma, though I find some Latin terms for throat cancer that make my head spin. Things got messy during the biopsy—they had to intubate her—but she was released after a few days. Since she has a tracheostomy, we’re heading to the hospital every day or two for cleaning. Everything is moving so slowly. Her doctor reached out to Dr. Darko Solter at the clinic, and now we’re just waiting for their call. Every single day you think, "tomorrow will be it," or "maybe Monday," but every day feels like a year. Because they suspected a pulmonary embolism, they did a bronchoscopy and a lung biopsy, and thank God, there are no metastases there. From what I can decipher from all the medical jargon, the carcinoma is about 40x42mm, which I assume means stage 3. It’s hit the base of the tongue and goes up toward where the tracheostomy is. Based on the biopsy back on the 12th, it looks like the vocal cords weren't involved, but she’s already lost her voice, so I suspect they might have been hit after all. She’s having terrible headaches and ear pain. She’s dropped at least 12 kg and now weighs only 47 kg. She looks like a skeleton. I managed to get some Prosure, and she takes two a day; otherwise, we just make purees and chop everything tiny because she can barely swallow. I visit her twice a day so I don't overwhelm her or let her catch a glimpse of my own sadness. She’s a fighter and stays so hopeful about recovering. But as for me, I’m getting worse every day. I keep hearing how grueling and intense this surgery is going to be, and she’s just so frail and weak now. They say recovery could mean two or three months in the hospital, and word is that once she's in Chicago, visitors won't even be allowed. How am I supposed to help her recover if neither my dad nor I can even get to her side? How do we support her when she can't talk and probably won't even be able to hold a phone to text for a while? I’m terrified. I lie awake in the middle of the night thinking I’d rather she pass away during surgery than suffer afterward, dying alone in a room without anyone there. Do you know if Dr. Darko Solter is a good specialist? I don't doubt him—most of them are top-tier experts—but I really doubt the recovery part. This situation is just brutal, not being able to grab your loved one's hand and just be there. Yet, I don't want to give up. I don't know if people typically die from throat cancer if there aren't any metastases. I have this gut feeling that we’ll fight through this in a year and she’ll be my mom and grandma again, making snacks and cookies and enjoying the sun all day long. I don't know how much experience any of you have with this, but I'm looking to you all for hope and comfort because nobody else understands. Angela Wright, thank you in advance; you are such a kind soul for helping everyone with advice and support.