Thursday, August 26, 2021

Been putting this off as long as I could...

Well... I've been putting it off as long as I could, both because I'm really needed at work, but also because it means a 40% pay cut, even if it's only temporary.... but last night, I finally had to file the paperwork for short term disability, due to my cancer, cancer treatment, and side effects.

At this point I just can't work. I can't maintain any kind of consistent times of being awake and functional, nor can I do so consistently for even 8 hours a day, never mind a "normal" 16 hours a day of wakefulness, and of course any kind of work schedule just isn't possible.

I've been working from my sick bed most of this year, and there's no way I'd have been able to work a "normal" office job or schedule, but working entirely from home with a flexible schedule, I've been able to manage it. 

Up until this second infusion I was generally able to do 3 consistent days per week, and fill in the other hours as I could... But now, I just can't do it.... and likely won't be able to do so for the next 2-3 months... 

...And that's presuming the treatments actually work... not a foregone conclusion at this point...

So, after I burn off my remaining sick days and vacation days, I'll start up to 26 weeks of short term disability leave, which as I said will mean a 40% pay cut, which is going to be more than a little bit tight. But at least I'll be able to stop worrying about work and focus on trying to stay alive, and maybe get better.

Wednesday, August 25, 2021

You have to pay attention

Remember, even the best doctors make mistakes, as do pharmacies.

On Friday I had my second followup with my Oncologist, before my second immunotherapy infusion. 

During that followup, we added a new medication to my stack, nifedipine, which is sold under several different trade names, including nifiprim. 

I have intermittent moderate to  severe esophageal stenosis and esophageal spasms, moderate to severe vasospasms including reynauds syndrome, moderate to severe peripheral neuralgia, and moderate to intermittently severe craniofacial neuralgias including trigeminal and glossopharyngeal neuralgia; all of which can be ncredibly painful, and at times potentially life threatening (because they can cause choking, vomiting, and restriction of the airway); and all of which are due to nerve damage and nerve impingement by my tumors on the nerves going through my neck.

Nifedipine is a calcium channel blocker, whose primary purpose is to reduce blood pressure and tachycardia. Generally, the preferred calcium channel blocker drug for that purpose is Amlodipine, which is also sold under several trade names but most commonly in America its Norvasc. Secondarily however, nifedipine can significantly reduce the frequency and severity of vasospasms, esophageal spasms, trigeminal and glossopharyngeal neuralgia, and reynauds syndrome.  

Norvasc is great at reducing certain expressions of high blood pressure and tachycardia. And I DO have tachycardia caused by a combination of pain, nerve damage, and side effects of my medications. However Norvasc also causes or dramatically worsens peripheral edema, and can worsen edema generally, and it can actually worsen the spasms I need the nifedipine to make better. 

I already have SEVERE edema, both peripheral and central trunk edema, as well as some intermittent pulmonary edema often very significant lymphedema... Which combined can be severe enough to the point where Norvasc could actually seriously harm me, including potentially life threatening harm. Notably, it would also almost certainly make the spasms caused by nerve impingement MUCH WORSE. 

At some point, between the docs notes, and the pharmacy, instead of Nifedipine, the more commonly prescribed Norvasc got filled for me. 

...I noticed this was wrong review8ng the insurance claim in my insurer's web portal, before I even went to the pharmacy to pick it up, and immediately called the docs office. They're resubmitting the correct medication this afternoon, and it should be available at the pharmacy tomorrow. 

No harm, no foul... mistakes happen...

However, If I had been a typical patient who just takes whatever the pharmacist gives them and maybe follows the instructions on the bottle... If I hadn't paid attention and double checked, and been my own informed and aware advocate for my own health, I could have literally induced congestive heart failure, from the wrong medication. At best, I would have made my pain much worse, without knowing why.