It’s Sunday, 88 days ATN and 48 days into chemo.
I’ve been reminded that I haven’t posted in a couple weeks and some of you are wondering how the journey goes. So here goes…
When No News is Good News
Well, at least in this case No News Is Good News. Infusion #4 took place last Wednesday without any incidents (including any trips to the ER 🙂) Some side-effects have been a bit more pronounced this time and some a bit less so, and I’ll go into those below.
To begin with the infusion itself – it was for once in THE AFTERNOON! At 1:00 PM. In fact the next one will be too! Now if only I can get back to a more normal schedule of waking up around 11 am I might actually start to feel almost normal again. (Hmm…Sadly my oncologist hasn’t gotten with the program. The next pre-infusion visit with her is at 8:40 AM…)
Shortly after checking into oncology an infusion nurse came to take me back to the clinic where I had my pick of a few chairs to relax in while being drugged. She took my vitals and then another nurse, Summer (yes it’s strictly speaking Fall now, but Summer’s her real name so don’t blame me for a lack of creative naming…), came by to get me prepped for the infusion. The first things out of her mouth after introducing herself was, “No cooking, ok?” Yes, I was the talk of the clinic a couple weeks ago. Unfortunately the admonishment not to cook wasn’t accompanied by a gift card to Waiters on Wheels or other meal delivery services. Apparently I’m supposed to starve. Frankly I think meals and delivery should be covered by insurance, though I’m fairly sure Anthem would have a fit over that.
The infusion went as usual – the pre-cocktail of Zofran and Dexamethasone to mitigate the effects of the chemo drugs, followed by the Oxaliplatin and Leucovorin. Apparently one of the advantages of an afternoon infusion is that the pharmacy delivers things quickly and there was no waiting around for the pump to be delivered – it showed up about 15 minutes before the in-clinic infusions were done. Then Summer went about connecting me to the pump and…the connections wouldn’t connect. I reminded her that infusion pumps and I just don’t get along in hopes she’d give up and let me go. But no, she called another nurse over and they got another set of connectors while mumbling, “I want to make sure we have a really good connection for this guy since he’s not compatible with the pump.” After some amount of fumbling they were, unfortunately, able to get the pump connected to the port access. Before releasing me Summer got an IV clip and showed me how to clamp the tube coming from the pump – just in case I get hungry, attempt to cook something, and end up severing the line again. On the way out I ran into the infusion nurse I had two weeks ago who smiled and said, “Don’t cut the line this time – you know you’re never going to live that down. <chuckle>.”
What followed were two days of nausea (mostly but not completely managed by Zofran and Compazine) and chemo-flu. Then it was back to the clinic to have the pump removed.
This time I had to wait 30 minutes. Apparently since I didn’t manage to cut the line I wasn’t as interesting a patient any longer. A nurse eventually came to do the disconnect and as we chatted she said, “Oh yes I’ve heard about you…” and went on to say I’d made it onto The List. She then related that in addition to not cooking infusion pump patients shouldn’t do house cleaning either. Apparently another patient had experienced an unfortunate incident with the IV line while scrubbing the floors. And another had managed to damage it while crawling under his house (must’ve been one of the old school vampires who hasn’t gotten used to bedrooms yet.)
So what’s a “normal” cycle?
Now that we’re into cycle 4 the routine is starting to become a bit clearer. Day 0 (the day before the infusion) has appointments and lab visits but is otherwise free. Day 1 is the infusion, which is half a day, after which the side-effects start kicking in. Days 2, 3 and 4 I feel crappy and sleep a lot. Things get steadily better over days 5, 6, and 7 though I still end up needing breaks periodically. So basically I have about a week to get done everything I’d normally do in two weeks.
So just what’s occupying those days at the moment?
- Looking into buying a certain house in Hawaii. This is definitely one of the more chemo-brained things going on. My medical oncologist said in my last visit she wants me to cut out all unnecessary travel so I’m definitely confined to the Bay Area for the near future. And since the Bay Area has rather good medical facilities (even if the tech capital of the US has crappy broadband, unreliable electricity, and no NextGen TV…) I’m planning on having follow-up monitoring here as well. So why in the world would I even think about buying a house elsewhere? Well, let’s just say I have my reasons (and apparently those of you in Hawaii might know already…)
- Open-sourcing the not-so-magical parts of the Project Entangle NextGen TV stack. Project Entangle has been in development on the professional side of my life for the last five years or so. It’s a commercial-grade DVR software stack (think TiVo Bolt OTA, but better. Hey I did have a heavy hand in architecting and designing many of TiVo’s solutions, and as everyone knows you get things right the second time!). Over the past few years I’ve been adding support for ATSC 3.0 (aka “NextGen TV”), which hopefully you’ll hear about in the not-too-distant future. As is not uncommon life threw some curve balls in the way of this commercial endeavor – a global pandemic and a cancer diagnosis to name a couple. But as they say, when life tosses you lemons make lemonade, so I’ve decided to make the base layers available via open-source. Hopefully it’ll be useful to some of the people starting to work with the cool new aspects of ATSC 3.0. The “secret sauce”, so to speak, is being retained for commercial licensing (it would be nice to have some income to pay for that house in Hawaii after all). At the moment this means a lot of code cleanup / sanitization and making things “look pretty.”
- Working with LiTV. LiTV is a Taiwanese company that’s become the premier streaming service provider in the region. Think of it as Netflix + Hulu for Taiwan, with streaming channels supplemented with a broad content catalogue. I’m proud to have helped to kickstart the company nearly 15 years ago, and LiTV filed for its IPO this year – congratulations team! While I’m nowhere near as active with them as I was in its early days I still enjoy working with them as challenges or new opportunities arise. It’s a talented group of people innovating in the entertainment and streaming spaces. On many days it’s given me something to look forward to.
- Avoiding jury duty. Ok so this is something I’m trying not to do. After living in California for 30 years I received a jury duty summons (actually I may have received one 20 years ago and have a hazy recollection of checking if I had to report, but evidently never did.) I asked my medical oncologist for an excusal letter which she’s provided, so let’s hope I don’t end up puking in a court room (though that would be a fitting form of “justice” if the courts insist on my attendance 🙄)
- And last but not least, managing the Bella Corte Homeowners Association. You long-time readers (i.e. those of you who have been following this blog for the three months its been in existence) know I’m the only Director in the Association. There are supposed to be three of us idiots running things but apparently all my neighbors are too smart to end up on the Board. Well it’s that time of year to review the reserve components, go over various insurance policies, and come up with the 2022 budget. And lucky me gets to raise the dues (now if only I could find a way to have those dues end up in my personal bank account…)
So life goes on, even if in a compressed form, and at least so far I’m managing not to lie in bed all cycle.