THE UPDATE

Guess that things are pretty much more the same:

• As I get into narrower-and-narrower sub-groups (i.e. Central Nervous System Relapse after Autologous Stem Cell Transplant and other prior chemotherapies and radiation), there are less “standard protocols” and less relevant and statistically-valid volumes of data to decide what to do next for *me*.
• All those we’ve consulted are in general agreement that we’re doing the right things now: doing intra-spinal chemo combined with intra-spinal and oral steroids to slow down progress of neurological symptoms and spread through/to the spine and/or brain. Get things into at least temporary remission (again).
• While doing this, consider (limited conventional/standard/known) options for more durable treatment once in remission. These options current include:
  • Allogeneic (donor-based) stem cell or marrow transplant – a riskier procedure than the last transplant I got, and probably couldn’t consider until next May or June (1 year after last transplant) and requires well-suited donor (my awesome sis would probably be best candidate – most others are much higher risk). Wrong donor means the risk/reward just isn’t there. Of course, nothing you read is *exactly* my situation, and much of the decision-making requires extrapolating “borrowed” data from somewhat-similar studies.
  • Experimental drugs that are approved for other uses or trials, but NOT for my situation. I might be able to get these drugs “off label” outside a trial, but there is little or no data on if they might work for *me*. That said, we’re consulting with someone at the Angeles Clinic on Tuesday (who my old elementary school friend who happens to be a major oncological research exec has connected us with!) to discuss this option.
  • We are also consulting with City of Hope (mostly transplant focused) and have some leads we are pursuing with others in the research community.

Bottom line? Going for as much comfort/quality/quantity of life as possible and researching all options is the strategy. My lower body pain is under control, I’m dealing with some more nuisance symptoms (like hiccups, if you can believe it!) and lower body functionality is more stable but still weakening. My posse has been great keeping me mobile, still doing coffee outings, helping with driving, bringing by meals. We’ll even do a short road-trip this weekend to visit cousins and friends. I am not alone! So, maybe a little Musing…

THE MUSING

I am not alone.

I am not sitting here regretting anything.

OK, with the steroids especially, I’m a bit of an emo basket case. What human wouldn’t be?

But this is more sad for those around me than for me. I hate watching what is going on through their eyes.

How can I make it easier for them? How can you help make it easier for them?

Stuff happens. We can do what we can do? I think the trick is just to minimize total suffering among the circle while still getting positive out of whatever’s left (which we just never know – we’ve seen the anecdotal outliers!).

Trite? Maybe. True? Afraid so. Do I know what is really next? Of course not.

But as time compresses, it becomes concentrated and more valuable. It washes softly over me. I don’t feel disconnected – I feel the thread that I’ve followed for nearly 53 years now and, better than most, have appreciated all those I’ve stayed connected to along the way. That whole thing about partitioning your life, work and non-work (for example) seems so artificial. There are the people you want around you and they can come from anywhere. I have a great life.

I see an amazing family, so much different than the one I came from. So ready for life.

(Geez, did I really just write all that? Sorry, but that’s what you’re getting…what else should I write? Want a fairy tale? You should watch Princess Bride – again – REALLY)

WHATEVER

OK, I know it is JUST A CAR, but the Tesla Model S was THE car for me. What a match with my tech vibe. I’m not a flashy/fast car guy, but the Tesla – wow, it was me! And the EVTripPlanner.com project was so much fun with Ben and the kids. And to see it succeed, and maybe help Ben get into college and soon see him do a Teen-TED talk on it or something. How cool.

But now my legs aren’t quite up to driving it safely. This car does NOT need pedals. It needs some electrically-connected hand controls. I refuse to put a mechanical retrofit from the 60s onto this car to drive with my hands! I’ve started a bit of a campaign emailing into Tesla, posting on forums, etc. See the open letter at https://evtripplanner.com/TeslaHandControlsCampaign.pdf and share it anywhere it might have some impact! I might need to get one of those all wheel drive insane Model D versions if they do this!