Living With… Stuff: 09 April 24

Met with my oncologist’s PA yesterday and she’s happy with my progress and after looking in my mouth and palpitating my neck (her hands were cold!) there’s some redness in my mouth that’s expected and she can’t feel anything in my neck that doesn’t belong there. They’ve scheduled me for the blood work and scans that I’m hoping and praying reveals that I’m cancer-free.

Later in the day, I had a video call with my palliative doctor and we talked about possible solutions to the pain in my feet due to neuropathy; the transdermal patch I’m currently wearing doesn’t seem to be doing a whole lot and I don’t feel like “investing” in the next highest dose and he agrees that if it’s not feeling better at the current dosage, the next highest won’t make much of a difference.

He did toss out the methadone option again and one that I’m trying to avoid because I’ve basically “just” gotten back on my feet (and literally) and anything stronger like methadone or, gasp, .50mcg of transdermal fentanyl would likely get the job done… by making me so stoned that I don’t know I’m in pain and essentially taking me back off my feet and unable to do much of anything. Been there, didn’t like it, and it’ll be a measure of last resort if the pain in my feet escalates to the point where I really can’t take it anymore.

So to avoid any withdrawal symptoms, he’s stepping me down to the .5 mcg patch even though we’re both of a mind that I could take this patch off and not experience any withdrawal symptoms that I couldn’t deal with – you should try coming down off of fentanyl so the patch can’t possibly be that bad. Now we get to the latest thing:

I’ve been tasting something acidic in my mouth that’s been setting my mouth – and, specifically, the right side of my tongue – on fire and I mean that shit hurts like nothing I’ve experienced so far. I have suspected it’s part of the reason why I have the magic mouthwash that has an antacid in it and the “acid” is a byproduct of my throat healing from the ass-kicking that it got from radiation. It makes sense given the PA did say there was still some redness at the back of my mouth/throat and it’s possible that my saliva hasn’t mysteriously turned seriously acidic but that’s how my poor brain is interpreting what I’m tasting.

She – the PA – said that it’s likely that the nerves in my tongue are healing, hence the pain I’m feeling and while I can take a shot of magic mouthwash for a bit of temporary relief, it’s yet another of those things I’ve experienced along this journey where there’s not a whole lot that can be done about it – and I just have to grin and bear it and… fuck, refill the script for more magic mouthwash – better to have it and not need it than to need it and not have it.

We talked about my appetite which, as far as I was concerned, was quite good – except for when I couldn’t taste anything – but now that I can taste, I have incentive to eat and I’m doing my best to pack it away as best I can or until I manage to piss my throat off, which invariably happens. Been writing down what I’m eating, how much I’ve eaten, and the calories consumed – and I decided to create an Excel spreadsheet to do this and so some fancy formulas and other stuff I learned to do with Excel. I have the tools, might as well put them to use.

I still have an issue tasting salt, something the PA said makes me a little weird because other patients dealing with this loss of taste report that they can taste salty stuff but not sweet stuff – and I can taste sweet stuff just fine. And I’m reminded that as my sense of taste recovers, things might taste weird to me, like I had some sauteed spinach with garlic that… didn’t taste like sauteed spinach with garlic and the reason why it didn’t was it didn’t have any salt; a tiny dash of salt on it made it taste better but until I can really taste salt, I should not be adding it to ,whatever I’m eating lest I piss off my blood pressure which has been doing just fine with only a very low dose of medication.

So many post-treatment appointments to keep track of and my lady’s been handling them for me although I need to opt for redundancy and put them into my phone’s calendar as well since we’ll go to an appointment and someone will ask what’s a good day for my next appointment and… there’s nothing in my phone so, yeah, gotta do something about that.

And keep a copy of my current meds on my phone, too, since they love to ask me if there are any changes to them; I know there isn’t anything new but it would help to be able to pull it up on my phone. I have to put a call into the ENT’s office to let him know that the course of steroids he gave me for the fluid in my left ear… hasn’t done anything, which means he’s gonna want to put tubes in my ear or maybe both of them and, yeah, I’m so looking forward to that.

Not. All of this keeps reminding me that having cancer, while not a good thing to find out, isn’t the hard part: It’s all the stuff you gotta do and go through when being treated for it – and even after all the treatments are over and done with. It’s also why I am hoping and praying that the cancer is gone and stays gone… because I don’t think I can handle having to go through all of this again.

Which means that if I have to, I’m going to because not doing it doesn’t make sense and if I don’t like going through stuff now, I’m really not going to like it if we have to reinvent the wheel on this – I just gotta do it and at this point in time, I don’t want to have to do this again. This is about settling in for the long haul – the five-year plan the team has committed themselves to in order to deal with me and in whatever way is needed – and I’m committed to hanging in there with them.

I have some weird shit going on with my right shoulder and collarbone area that might be due to radiation-caused nerve damage that may have cause muscle atrophy in that area; getting a scan to take a better look and I need to talk to the radiation folks to see what they have to say about it; the PA took a look and she’d be interested in what the scan I’m getting has to reveal although she seems sure that it’s not something that chemo caused and, sadly, I’m not much help because what I know is that it wasn’t like this before I went into the hospital.

So, we will see whatever there is to see with all of this stuff. One thing at a time, one day at a time…