Hopefully, A Treatment Plan

I'm pleased to report that, after that whirlwind week with far too much on my plate, things have slowed down yet not come to a standstill.

There was some doubt as to whether or not we would be able to get the CT simulation (mapping for radiation treatments) at our appointment with Radiation Oncology on February 18. At that point, instead of giving me an actual appointment for the CT sim on the 18th, they claimed they would "hold a spot" for some time that afternoon. Rather "sus" as the kids say these days. When we came in for the appointment on the 18th we pushed a bit, sternly reminding them that we were scheduled for the CT sim on the 9th and were "promised" it would happen on the 18th. 

It worked. We had labs/bloodwork done (the first using my new chemo port), then saw the RadOnc nurse practitioner, then saw the main RadOnc doctor*, then they did the CT simulation, all punctuated with lots of wait time in exam rooms. My 12:30 appointment ended up taking the better part of that afternoon and, I swear, 50% of that was waiting. I'm glad we got it all done, though. Good to be moving forward.

* My Radiation Oncologist's name is Xanthopolis, but most people (including other medical professionals) refer to him as "Dr. X". Personally, I don't find Xanthopolis hard to pronounce or remember, but I smile every time I think that everyone calls my  Radiologist "Dr. X".

The following day, we returned to the Cancer Center to meet with my MedOnc doctor and go over both the results of the bloodwork and review our steps going forward.

Earlier, I mentioned that a PET CT scan showed some possible activity in? on? my left adrenal gland and right salivary gland. Both specialists that I'm seeing are leaning toward a benignly blocked salivary gland, so they referred me to an Ear, Nose, and Throat (ENT) doctor. 

That turned out to be rather fortuitous because I've been wrestling with diminished hearing due to ear wax buildup. (I've had issues with that since long before my cancer diagnosis.) Lately, I've been treating it with daily applications of hydrogen peroxide, but the buildup just seemed to laugh at that. It had gotten pretty bad... for most of last week, my hearing was that of someone about 10 feet under water. 

I just saw the ENT today. A physical examination of the area of my salivary gland didn't raise any red flags, so he's going to put in a request with the almighty insurance company to do an ultrasound of that part of my jaw. I know how this goes... The insurance company's AI will deny it at first, then the doctor will have to appeal it, then (hopefully) it will be accepted, then I'll get a call to schedule the test. 

The best part of the ENT visit, though, was having my ears cleaned! They had gotten so bad that I was unable to enjoy listening to music and wasn't engaging in conversations. I feel like I've got super-human hearing now in comparison!

We are also currently waiting to hear back from the almighty insurance company regarding the request for radiation treatments to my left adrenal gland. Same process; The expert (our doctor) puts in the request, their AI denies it blindly, the doctor has to appeal the decision then, hopefully, we get the go-ahead to schedule treatments. 

I wonder how many people are dying or at least getting a lot more sick while they wait for this stupid chess game to play out. The time between the original request and actually being "approved" for the treatment can now be several weeks. How often does a sick person have several weeks to waste before getting treatment?

Frustration with the delays of the health insurance industry aside, I'm grateful that things are finally starting to move. We knew we were dealing with more cancer growth as far back as October 2025. There was almost no movement toward even diagnosing the problem in November and December, and the stagnation filled me with anxiety and depression. The ball started rolling again in mid-January and, with any luck, we'll start treating it by March. I still wish I didn't have to deal with any of this but, accepting my circumstances, the recent activity feels much better than the depressing lull of the previous few months.

Taken after the same ice storm as the shot from the previous post, only much less abstract.

 

Nothing ... then EVERYTHING

In recent updates, I've mentioned that almost nothing happened (in terms of both diagnosis or treatment) in November, December, and the first part of January. This brought some significant depression with it since we all knew that some cancer was still growing, and that my cancer is an aggressive kind.

Things started to move with a PET CT (Positron Emission Tomography and Computed Tomography) scan on January 14, bloodwork on the 22nd, and an appointment with my oncologist on the 26th. Then, in the first week of February, it was like the medical floodgates opened...

• M 2/2 - 6 month check-up with my General Practitioner
• Tu 2/3 - Visit with dentist to have a cavity filled
• W 2/4 - Meet with the cardiac surgeon who installed my chemo port*
• Th 2/5 - Face-to-face consultation at the Cancer Center about a new med 
• F 2/6 - Double surgery* to remove a chemo port and install a new one
• Sa 2/7 - My monthly Prolia injections for bone strength

*Wednesday's appointment with the cardiac surgeon ended up taking the whole afternoon at the hospital. At first, upon visual inspection, he did not feel there was anything wrong with my port, despite it being very stubborn at the last 2-3 blood draws and a scan indicating that it might be leaking. As a "let's just make sure" measure, he sent me downstairs to have a scan done specifically of the port after a tracer was injected. 

I could tell that something was up because I overheard the person doing the scan using words like "leak" and "occlusion". I was sent back up to meet with the cardiac surgeon again, where he informed me that the old port would indeed need to come out and that he would install a new on on the other side of my chest. He said he wanted to do this on Friday but, since nothing really moves that fast in my medical universe, I took that with a huge grain of salt.

He was serious, though, because he started having us run all over the hospital for various pre-surgery stuff like a COVID-19 test and a (second) chest x-ray. Our original appointment was for 1:30 in the afternoon but we didn't get out of that hospital until around 5 pm. On one hand, it was great that they could just have me do all that stuff while we were already at the hospital, but it was also frustrating that an appointment that should have been about an hour ended up being over three times that.

We had a 7:30 arrival time for surgery prep. Even though I am allergic to mornings, I was a good boy and showed up on time. Well, okay, mostly thanks to my dear wife. The surgery was scheduled for 9 am but I didn't end up going in to surgery until around 10 am. Once the anesthesia took me to la-la-land, they removed the faulty chemo port inside my chest on the right side and installed a new one on the left side. It must have all gone reasonably well because I'm still here to type about it. I think we got out of there around noon, after which I just convalesced (and slept) on the couch for the rest of the day. 

 

Last week was definitely a case of "be careful what you wish for". I went from being depressed that no one was doing anything for months to, "Holy shit! Can we please slow down?!" I've been very tired since. I know part of that is my body recovering from surgery and using energy to heal the wounds, but I'm certain that part of increased fatigue is just how much medical stuff was packed into that week. 

My new med arrived on Thursday of that week, but I decided to wait to take it until the day after the surgery. It's a new hormone receptor blocker, so that is probably contributing to my fatigue.

One more thing. In my last post, I mentioned having an appointment on February 9 for a CT simulation, which is kind of like a mapping session prior to radiation treatments. Treatments typically begin a couple weeks after that. We got a call from the Cancer Center that they needed to cancel that appointment and come in for a consultation appointment on February 18. We wanted to get put on the books for the CT sim on the 18th, then, so we wouldn't have to wait even longer. (We knew by December that we had more cancer to kill. We suspected it as far back as October.) They've definitely got me down for that consultation on the 18th, but I've got my doubts as to whether or not that CT sim will also happen that day. Time will tell. 

If the CT sim happens on the 18th, there's still a chance I could start radiation by the end of February. If not, we'll be well into March before I can start treatments. This will be about three months after we saw a need for them.