All posts by Mike

Was it a fair trade? My two flats and having to get picked up, in exchange for a good PET scan for my wife?

Personal stuff, Tues/Thurs 7:45am ride

Rough ride this morning. Hardly slept last night at all, with the concern about my wife’s (Karen) most-of-body PET scan yesterday, results we’d be seeing this morning, along with a video call with her new oncologist.

For some reason I ride ok without sleep. At least on a given random day. Pile them together and it’s another story. But rode OK with ex-Pilot up Kings (younger Kevin bailed, saying his stomach was giving him issues). I wasn’t worried too much about getting back in time for the 10:30am video call with Karen’s doctor, so when we came to a pretty long traffic control stop as we headed down 84 towards West Old LaHonda, no biggie, right? It was actually a pretty long stop, but again, lots of time.

Took it pretty easy on West Old LaHonda because, after all, I had lots of time. On a normal ride I need to be back home by 9:45 to take a shower, eat, and get to work by 10:30 to get things ready to open. Today, I just needed to get back home by 10:10 or so, enough time to take a shower and be ready for the 10:30 video meeting. So an extra 25 minutes! No problem.

That was before I got a flat tire on West Old LaHonda. Something that happens maybe once or twice a year for me. But of course, today. And then I discovered I had installed a shorter-valve tube into a wheel that requires a longer valve. Oh well. Still got time. Never did find what caused the flat.

Got going again, and yeah, that big safety margin was going away. Looking at my tire after descending 84 (actually, I was watching it the entire time, concerned it might go flat again), it’s not looking good. Slow leak. Make it as far as Woodside Road & Kings and gotta stop again. This time, I’m not going to chance another repair, there was something in the tire I hadn’t seen earlier. I call Becky to come out and get me, and of course, while waiting, I did find the small piece of glass that caused so much trouble. Eventually I make it home, in a car, bike on back… at 10:15. Very fast shower and my wife and I are ready to go for the video call with the doctor.

We already knew the PET scan looked pretty good; that came up in a message from Kaiser. We won’t be able to get used to this particular doctor; she’s going on maternity leave next week! That seemed a bit strange… she’s not going to be there when any important decisions are made. But she’s taken Karen’s case to the “tumor board” tomorrow morning, where she discusses my wife’s case with various other doctors, trying to come up with the best treatment.

Unfortunately, we don’t yet have all the data we need; the biopsy from the lung didn’t have enough material for immuno and genetic testing, so she’s going back again for another biopsy, hopefully very soon. We asked whether we should be cancelling our planned December vacation due to treatment; she said that it’s not that big a deal to skip a treatment in the middle, in the “grand scheme of things.” And I’m thinking, the treatment protocol is a protocol that is known to work if you stick to it. Yeah, I’m one of those that never ever misses a dose of medicine. But since we don’t have any idea what treatment is going to look like, who knows. Right now, we just have to wait.

It’s frustrating, seeing my wife looking healthy and feeling well, and knowing this will be changing (hopefully, presumably, not from the cancer but from the treatments to buy us a whole lot of time). Why can’t we just put cancer on hold, leave things as they are, and keep on moving forward with our lives? In the science fiction realm, we’d put Karen in some kind of suspended animation (ok, it’s always a deep freeze, and she doesn’t like cold…) and bring her back when there’s a cure in a few years. Because right now there is no cure, just a variable amount of time, depending upon how well various treatments work. And it will be treatments plural, because the way this stuff works (when it works), the cancer eventually finds a way around it (mutates) and you have to move on to something else. Only one thing is constant, and that’s me. I have no intention of moving on from Karen. I intend to keep her in my life as long as I possibly can.

Update on wife’s cancer, genetic testing and privacy issues

Personal stuff

We’re waiting for the results of the genetic testing and immunological info of Karen’s biopsy, which will help determine the best course of action. We don’t yet know how expansive the testing from Kaiser will be and it’s the one area where, if we had to pay $10k out of pocket just for an expanded genetic panel and consultation from Stanford, we’d do so without blinking an eye.

Karen had a brain scan yesterday morning, and it was clean! So not saying there are no issues upstairs, but at least cancer isn’t one of them. Monday afternoon is the PET scan of the rest of her body, and then Tuesday morning a video call with a breast cancer specialist at Kaiser we haven’t yet met.

I really need that pathology report before going into that video call. Our bodies carry a ton of genetic mutations that are largely harmless, some nasty, but even the harmless ones hold clues that can help determine which therapy might work better than another. This is an emerging field, and one where privacy issues stand in the way of healing sick people. Privacy issues?

Yes, our concerns about “big brother” knowing if we’re likely to come down with this or that disease… that’s a legit concern people have. What if an employer had the choice between someone whose genetic makeup made it 20% more likely that he/she would develop personality issues that could be a problem in the workplace, vs another similarly-qualified person without that? Or insurance companies not wanting to deal with people who would cost them more to insure than they’d pay for?

But keeping our genetic information private deprives us of hugely-important information that could result in amazingly-effective treatments for tough diseases. Currently, a medicine that offers, on average 7 months of additional survival for someone with triple negative stage 4 breast cancer (Keytruda) is seen as a breakthrough. Just 7 months. Not everyone gets 7 months; some get much more, some nothing at all. The genetic coding within us may hold the secret of who might get 7 years, and who needs to be looking elsewhere.

This really hits home because my wife is one of those who generally doesn’t want others to know things about her they don’t have to know. It’s none of their business. She has had trust issues going back to childhood, and from my perspective, sees information as something that’s inevitably weaponized. Me? Geez, google my name and you get 12,000 entries. My life is an open book. I write about anything and everything. I presume trust, and I believe the more open I am with people, the better they’ll understand and help me.

More later.