There really isn’t too much going on this week. Rest and relaxation would almost be a good way to sum it up. Except relaxation is a bit difficult when it feels like you are swallowing razor blades at times. So it’s more like rest and grimacing. Or rest and clenching. Or rest and whimpering. You get the idea.

One Week Post Discharge
A week ago today I was discharged. Part of the discharge process was a swallow study. The intriguing thing is there is no good way to look at your throat. This isn’t one of those “Open up and say ahhhhh” type of things. So what they do instead is shove a fiberoptic camera up into my nose and then point it down at my throat. It’s pretty simple to do. Just put it in my nose. If you see a bunch of nothing, then the probe has gone up instead of down and we’re looking into my empty noggin. Otherwise if you see something red, puffy, and grotesque, then the probe has gone down and you’ve found my throat.

What you see on the left side of the image is my throat. It’s a bit unclear because it’s a picture of a picture on a monitor. And at a slight angle. It’s also a bit unclear because all the tissue in my throat is swollen like a mofo. But the visual helps explain the whole “I swallow. It hurts.” mantra.

Now on the right you see a normal throat. No mofo swelling at all. This person can probably chug a beverage of their choice and not think twice about it. While I on the other hand have to wince a bit after I swallow. The other thing that is hard to see in the picture of my throat is that some of my flesh is cauterized. Think like the top of a piece of cauliflower but more fleshy and black.

Life Today
One week out from discharge I’ve settled into a pretty decent routine. The key, which I discovered during my relapse in 2015, is to only focus on the next thing. Like the very next thing. As in “I just watched Price is Right. What now?”. So the next thing at the moment is this blog post. And then after this will probably be “drinking my nutrition”. Aka lunch.

Otherwise the next thing typically involves some form of medication, nutrition, rest, drinking water, drinking more water, tube draining, site cleaning, TV show, vibe-coding, etc. It’s not the most glorious life, but I am alive. So that is the thing to focus on. I’ve also found some good relief by laying under the mist from our humidifier. Now the blanket gets a bit wet, but this picture is from when I’m the most comfortable. Having my neck wrapped up feels better and then the mist raining down on me keeps my nose/throat moist and hurting less.

Next Up
My next appointment is this Friday with Dr. Sim’s Physician Assistant. There was a point in my life where if someone said “Do you want to wait for the doctor or see the Physician Assistant/NP now,” I would have always waited for the doctor. And in some scenarios that’s appropriate. By Dr. Sim’s PA Lori pretty much rules the roost. No nonsense. This is the way it is. This is what you need to do. She’s my kind of gal. I of course already pulled my NG tube, so Friday will be about assessing my swallowing and pulling the drain that has been in my neck.

The other upcoming medical appointment is with Dr. K, my Radiation Oncologist. Dr. K is freaking amazing. I say the doctors you want are the ones who are slightly rude and a bit socially awkward but universally loved by patients. Usually that indicates the right mix of Asperger’s and Medical School. Much like my first Immunologist Dr. Nelson. “Bob” was a bit awkward. On more than one occasion Lindsey wanted to pin him down in the exam room and shave his overly bushy eyebrows. But dude was smart. And for fun he’d read very odd things like books from the 1600’s that talked about our evolving discovery and understanding of microorganisms. To each their own I guess.

Now I’m not quite sure yet what Dr. K does for fun. Being in RadOnc, I’m guessing it’s not microbiology. Either way though, I can already tell she’s the kind of person that cuddles up at night with a blanket, perhaps some hot chocolate, and then a stack of medical journals and charts. At this visit with Dr K. we’ll go over my plan for radiation. Given my path results (oh geez, I haven’t talked about my path results yet) it will be on the more agressive side. Definitely daily radiation. We’ll find out more about duration during that visit.

You’re Not Fooling me SunLife
Before we get to the path results, let’s talk about something near and dear to my heart….Insurance. Be it health insurance or in this case disability insurance I’m the kind of guy who likes solving problems and insurance is nothing but one big tangled ball of problems.

One of the oddities in America is that much of our healthcare system has a fiduciary responsibility to shareholders and not much of a responsibility to patients. You have to be a bit proactive to get what is rightfully yours. After all, the stock doesn’t go up based on paying out claims correctly. In some ways handling claims incorrectly is exactly what drives a higher stock price. But let me get to the point before I work myself up into a tizzy.

Long story short I’ve had 2 documents that have been sitting in Pending status for about 10 days now. Neither makes sense. One is your run of the mill HIPAA form and the other is my approval to release medical records. Like each of these should be someone looking at them for 30 seconds and clicking approve. Yet they just sat. And that of course delaying is advantageous to Sun Life. While ultimately the benefits they pay will be the same (the amount is based on my disability date, not the date of approval) by delaying they can hold onto their cash for longer. Cash flow benefits the shareholder, not the patient. Sorry, getting into tizzy territory again. Let’s keep moving.

So, I struck up a chat with SunLife. Which got funny for a moment because after going through my surgery and some other items with the rep she ended the chat and tried calling me. Like A) I don’t typically answer a random number to begin with and B) seeing as I just had a robot do surgery on my freaking throat it was unlikely that a call was going to work anyway. I pointed that out when she got back on the chat and asked why I hadn’t answered my phone (Um, because I can’t talk?). Even then, an equally accurate answer would have been “Because you said nothing about calling me. You simply ended the chat and I had no idea why”. Freaking insurance.

Oh ya, the point of all of this… Even though there was nothing in my portal needing action, the rep said they needed to know what restrictions my doctor gave me and when I can return to work. I pointed out that this information had been submitted to them by my doctor over 10 days ago. But she said it was a standard step to verify the information with me. I don’t buy that for one second. They have my diagnosis. They have my treatment plan. They know what I do for a living and what the side effects are of the surgery. They have everything they need to approve. What they don’t have though is me saying something different than the doctor. They don’t have me on record saying I think I can go back to work earlier or that the restriction the doctor put down isn’t really a big deal. Basically they don’t have anything where they have a shot at denying my claim. Thus they go fishing. Sorry SunLife. I’m not biting.

Pathology
And now let’s wrap up this post with my Surgical Pathology report. Full disclosure, we haven’t discussed this with my medical team yet. But there are a few things to glean that are worth sharing.

  1. Pathology showed clear margins around my tongue tumor. The tissue sample that includes my tumor did show cancer at the edges, but then there was additional tissue taken out around the tumor bed and all those margins were clear. GTFO cancer. You been got.
  2. The tumor itself was a bit bigger than we thought. PET showed it as 1.9 cm x 1.9 cm but the tumor was actually 2.5 cm at it’s greatest dimension. There is some perineural invasion identified but thankfully no extra nodal extension (ENE). ENE is when the tumor breaks through the lymph node sac and thus could have escaped into more tissue. Either way, this is why we are doing radiation.
  3. Likewise the tumor in my neck was a bit bigger than thought. It measured 5.1 cm at its greatest dimension. But that little son of a bitch is out of my body now too.
  4. I had mentioned that we expected some lymph nodes to be cancerous. And 3 of the 21 removed lymph nodes in the 2A region of my neck were cancerous. Ideally all would be non cancerous, but 3 out of 21 is much better than 21 out of 21.
  5. And finally they also took 7 lymph nodes from the 2B region of my right neck. All 7 were cancer free! So this indicates no further spread beyond what we’ve already taken out.

So while there are probably some straggler cancer cells in my throat/neck the tumors are all gone now. And that feels pretty damn good.