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Tuesday, September 21, 2021

You ask what is the quality of life?

Blogging Tunes: David Gilmour - David Gilmour

This is going to be quick… matter of fact… terse.  Short and sweet.  Because it’s really I have.  Sorry for not writing more.

The laptop situation has not improved despite the UCSF IT guy assuring me that it was a “number of leases” problem and that they were going to release them all so my laptop could connect.  No dice.

Why is this worth writing about?  There’s some basic work stuff that I’d really like to do which is going to be much harder — if not impossible — on this 8+ year-old iPad. Maybe the Vineti IT guy will have some ideas.

This chemo regimen is absolutely knocking me out.  I’ll spare you the details on how much IV I get and how many pills I need to take per day.  It’s insane.

And all the stuff they are giving me for nausea is maybe me so tired… but the steroids are keeping me up.  We need to find a balance.  Also, the bed is just horribly uncomfortable.  I’m barely eating too.  This whole timeline is way accelerated this time.  No idea how I’m gong to do this for 3 more weeks.  It’s so much harder than last time.  

Hopefully H is coming to visit today.  I definitely need to see her.

I know everyone reading this just wants to do something for me.  Unfortunately, there’s really not much to do.  Sounds like some folks have been in touch with H.  Thanks for that.  It’s just that the “hey, how ya feelin’” texts don’t help.  Sorry.

Even writing this short little blog entry completely wiped me out.  To my work POLTers, I’ll be in touch on slack today or tomorrow to talk about a bunch of stuff.  Hang in there.


Sunday, September 19, 2021

I cling like a lizard to the side of the cliff

Blogging tunes: NatureSpace Vidsyni

Super quick post before the Eagles/Niners start. This is starting out very differently than last time. I started chemo last night, and overnight spiked a high fever with chills, sweats, overly vivid dreams, and hallucinations. I feel very weak right now. Just walking to the bathroom and back feels like I rode my bike 10 miles. We’re trying to figure out what’s going on.

Second chemo starts at 10a PT. If my energy doesn’t improve, expect much less communications for me, even here. @Louise, I’ll text you later.

Baseball update. Orion’s team went 2-0 yesterday and got the #1 seed. Floyd’s team when 1-1 and got the #4 seed.  Both teams play at 12:20  Good luck, kids!  And thanks for driving them, mama. Go Stings!  Go Phils.


Saturday, September 18, 2021

Writt'n fire across the heaven, plain as black and white

Blogging Tunes:

  • 12U Steel (Orion’s team) vs East Bay Legends via GameChanger (Steel won 5-1)
  • Trey Anastasio Band - Sep 17, 2021 - Portland, ME - audio (welcome Dezron)
  • Alabama/Florida - video - 2T parlay: Alabama -13.5 / Over 60.5 (LOSE)

[Here you can see the blog post in progress on iPad, the Tide on TV, and the Bose speaker playing the TAB. Can you spot the Phanatic?  How about Dick’s tix?]

Warning: pics of very light surgery (PICC line installation) below.


OK… strange IT problem to start the day.  Phone and iPad are fine, but MacBook and the WiFi aren’t playing well together.  So weird because last night laptop was great.  In fact, I was FaceTime’ing with my mom for over an hour watching Phillies/Mets and then the end of Giants/Braves — no issues at all.

Today, the behavior is: if the lappie is connected to WiFi everything is 100x slower than it should be… like internet apps take 2 minutes to launch.  If WiFi is off, apps launch in seconds.  Pinging the router with Terminal app just shows 100% packet loss.  Hard reboot and even OPT-CMD-P-R reboot didn’t solve. Could they be blocking my machine based on bandwidth used last night?  Feels like a lower-level problem. Hopefully we can figure this out before Monday or work is going to be a major problem.  IT ticket submitted.  Otherwise @Benji, gonna need your help. :)

It was nice to “hang with” my mom and watch the game.  I even got some “pub style” food for dinner: a really good turkey burger with fries.  Might as well enjoy it while I still have my taste buds, right?  So far, the food is *much* better than it was 10-11 years ago.

There’s a Chrome Book touch screen thingie for food ordering and other random stuff too.  UI looks like this:

Boom chicka bow bow!

Anyway, on to the real stuff.  I was admitted at about 3:30p yesterday and almost immediately got my PICC line put in.  This lets them draw blood or give me IV drugs whenever they want.

By this morning the PICC site was very sore.  Part of it is that my platelets are very low: 8 to be exact.

I also got some kind of a heart ultra-sound which went fine.  They just need to check the ticker before starting me on the poison.  No pics of that.

Next steps for today:

  • Platelet transfusion
  • Blood transfusion
  • Chemo begins
This whole thing is just so bizarre.  I’m seeing some of the same doctors as 10+ years ago and every single one of them is just floored.  Apparently the number of people on the planet with successful transplants for AML who relapse after 10 years can be counted on fingers (or maybe fingers and toes.) That’s like what… hitting a 20-team parlay?  @Travis, hook it up, brother. 

And this isn’t just the same thing all over again.  I mean… it kind-of is in terms of treatment — though this first round of chemo is going to be a little bit different — but it’s more about the emotions… my emotions, H’s emotions, the kids’ emotions.  There’s just no time to prepare.  It’s like, you go from “feeling a little off” to “not feeling well” to “in the hospital for 4 weeks of chemo now!” in only a few weeks.

How do I prepare myself?  How does H?  How is this going to affect the kids?  How bad will the chemo be this time?  Same as last time?  We just don’t know anything.  The outcome was great last time, but the process was a bitch.  Don’t let the rah-rah optimism fool you into thinking it’s going to be easy.  It fucking sucks — no two ways about it. Except this time it’s not all new.  I know the shit that’s coming and there’s nothing I can do about it except embrace it and fight.

Speaking of which, Heather recommended a great book that I’m reading — well listening to via Audible — called Miracle in the Andes.  A book of survival and inspiration is exactly what I need right now.  Thanks, babe. ❤️

Platelets just arrived.  McKenna’s gettin’ ‘em goin’ now.

IMPORTANT: I appreciate everyone who’s reached out to me (and Heather) via text.  We know everyone wants to express their love, offer help, talk, come to visit, etc. We’re all making a big adjustment very quickly… and as a result, we may not get right back to you (or get back to you at all.)  That doesn’t mean we don’t love and appreciate you.  We absolutely do.  And, please let us drive. :)

We’ll use this blog to keep everyone posted on what’s going on, and when we need help or support, we will ask.  ❤

Chemo starting soon.  Go Phils!  Go Giants (well, this weekend anyway.) Go Birds!

UPDATE: Woo!  Phils on regular TV!

I will kick its ass.

Friday, September 17, 2021

Why isn't it Friday today?

Blogging Tunes: SomaFM Groove Salad

[Started this post on Thursday night, resuming Friday morning]

So after some good times at the Kezar with Brown, pcal, Eric, and, Benji, I finally hear from UCSF, but instead of telling me to come back for admittance, they tell me that it's going to be Friday.  So I ordered more wings and a boatload of tortilla soup to-go and arranged a ride back to Marin -- thanks, Auntie Laura!

Don't ask me why/how, but they couldn't get the Phillies game on TV yesterday afternoon, so I missed this insane comeback:

Not that it's going to matter... the Braves will probably win the NL East and lose to the Giants in the first round anyway.  But damn, Bryce is on fire.  Ya nevah evah know.

So I got one bonus night with the fam, another good prime time NFL game -- even though the "Football Team" didn't cover, and most of our props went south.... way to go, Travis!  ;) -- and a nice (though not all that restful) sleep in my own bed before this crazy ride begins (again!)

As I write this, I'm waiting to hear from UCSF about admission time today.  Hopefully it'll be earlier than later, as I assume that they're going to want to put in a PICC line and do all the other stuff they did when they admitted me in December 2010.

The good news is that they re-ran the bone marrow scan and -- if I'm interpreting the results properly -- found literally hundreds (if not thousands) of 10/10 matches.  So now of course the big question is, how do they decide who to use?  Several people have asked questions like: "Can you just get cells from Martin again?" There are a few factors:

  1. Since Martin and I have become (best of) friends -- more like "blood brothers" -- the marrow registry may not allow it.
    1. There's a rule about using repeat donors once contact has been made.
    2. That's an understandable rule but BS in our case of course, since Martin would donate cells again in a heartbeat (pun intended.)
    3. If my team decides that Martin *is* the best match going forward, we'll fight that silly rule tooth and nail.
  2. Martin is a known entity, with amazing results.  We have no way of knowing the results from other possible donors.  There's more rigorous genetic marker typing now, so it's certainly possible that there will be a "better match on paper"... but how do we know if that match will be better in practice?
If I knew for sure I'd get another 10+ years -- not that that's guaranteed with Martin or anyone else -- I think I'd take that vs going for door #2 or door #3, you know? It's like, do you keep the $500k or go for that $1mil question with Regis Philbin.

We have some time to figure all that out because we need to achieve a remission before a BMT/SCMT is even possible.

Ooooh, message from UCSF just came in.  Let's see... nope.  Not about my admission.  I'm gonna call them.

More once I'm there.

I will kick its ass,


Thursday, September 16, 2021

Reach for a beer, glad that I’m here


Not gonna admit me til later today?  Fine. Wings and beer time!

Seems that Most Events Aren’t Planned

It’s AML. Again. 1 in 1000+ chance of relapse 10 years out. I’m a goddamn case study. Why can’t I have these odds when I bet on sports?

They are gonna admit me at UCSF this afternoon and chemo will starts as early as tomorrow.

Same fucking process. Chemo to achieve remission and then allo transplant. @Martin unclear if it’s gonna be you again. I’ll tell you more on WhatsApp.

Unfucking real. šŸ¤¬

Wednesday, September 15, 2021

And I stare straight into the future, tell me what do you see?

Blogging Tunes: SomaFM Groove Salad

Well, I'd hoped to have a little more info by now, but I don't.  Maybe another message from Dr. D will trickle in later tonight, but for now, here's the situation:

  • I got a blood draw this morning, but I don't see any results in the patient portal -- weird
  • No results from the bone marrow biopsy are posted in the portal either -- ok...
  • I got a message earlier today from Dr. D saying that:
    • Appointment confirmed tomorrow for 8:45a
    • He's starting to see prelim results from the BMB but he needs more
    • If it's AML again, it's possible that I'll get admitted tomorrow for 4 weeks of chemo.... yaaaaaay!
    • But... it could be something else, and so it's also possible that there may be -- see how vague it is? -- outpatient options
    • Also, apparently UCSF is slammed so even if they want to admit me, it might be a few days before they can
So... nothing really to see here.

If they don't admit me, somehow, some way, I want to get out to Martinez this weekend: both Floyd and Orion have travel baseball tourneys.  Nothing like a Saturday of 14u and 12u travel baseball to keep your mind off of things, right?

Oh, and last night, just 'cause you never really know if you're gonna have tastebuds for long, Heather and I opened a nice bottle of Pinot.  I guess this is the grown-up version of "life is uncertain, eat dessert first."

As a matter of fact, I think there's about 1/3 of the bottle left, so I'm going to pour a nice glass and get ready for my hour with Wendell.  Who's Wendell?  Check out this book.

More tomorrow for sure.

I will kick its ass.

Tuesday, September 14, 2021

The fog has just lifted revealing the gray

 Blogging Tunes - SomaFM: Drone Zone

We're all just in shock... and honestly, it's going to take a little while to get back into the "kick its ass mode." Right now, I'm just angry (with bouts of sadness) but I'll get there.

Looking back, the last 4-5 weeks feel pretty similar to Sept/Oct 2010 (minus the night sweats and the mouth sores.) Maybe that means it's not exactly AML... that it's some other major bone marrow dysfunction that won't need as aggressive treatment.  

Still, it all lines up: increasing fatigue; little signs of energy loss escalating to full blown shortness of breath; increasing heart rate at rest; inability to work out; the whole nine.  Now I can't even walk around without feeling like I'm going to pass out.

Still, back in 2018, we were told "chance of relapse is nil".  No one else relapses 8 years out (let alone 10) from a successful BMT, right?

Yet here we are.  My blood counts are fucked.  Everything is low -- well except iron-related stuff.. that's all high.  The condition is called PANCYTOPENIA.  What does it mean?  What causes it?  How do you pronounce it?   How do you treat it?  You can find all that out here.

So what now?  Well, on Saturday I was admitted to Marin General for an emergency platelet transfusion where I stayed for a couple nights.  Gotta say, the new building is amazing.  Nicest hospital I've ever stayed in.  They found blasts in the blood so it's looking like some kind of leukemia.

So based on those results, yesterday I had a (very long and painful) bone marrow biopsy.  You really don't want one of these if you can avoid it.  Hey, at least I "tolerated it well!"  šŸ™„

After the BMB they sent me home, so I'm getting to enjoy a little bit of beautiful San Rafael weather and some time with the fam.  

We'll start to see some results from the BMB tomorrow and then I see Dr. Damon at UCSF on Thursday.  What we don't yet know is... will that visit be an "appointment" or will I be "admitted" so we can start whatever the hell we're going to need to do.  If I do get admitted:

  1. @Lisa M, ima come lookin' for ya on 11-Long or 12-Long or whenever you are!
  2. @Benji, we're going to be seeing a lot more of each other, I guess.
  3. @Brown @Raffi, depending on visiting rules, it would be great to watch Eagles/Niners with one of both of you this weekend.  Actually, now that I think about it, maybe better to watch TNF with Brown and Iggles with Raffi.  #amirite?
  4. @Schiff, you missed round 1 of this shit, you can make up for it now. :)

I'll post frequently here with updates. So check back often.

If nothing else, maybe we'll get the fundraising cranking for this year's Light the Night.  Heather and the boys just got a fundraising page started, it seems.  Thanks, love!

Speaking of Schiff... Hey Chum bandmates: at least we got the Dick's shows in, right guys?

Ha!  I even got super tripping dreadlock dude in one of these selfies!  See yellow arrow in second pic.  šŸ¤£

Here we go again, gang....

Got the whole thing down by numbers... all those numbers.

This post had been in DRAFT since January 2021.  After I wrote it, I decided not to post it for a few reasons.  1) I didn't want to jinx it; 2) It just seemed a bit self-serving.  Then, after my 10th birthday came and went, I felt the moment had passed. But I'm publishing it today -- Sep 14, 2021 -- unedited from 8 months ago, for reasons that will become obvious... more soon.  

 Blogging Tunes: Genesis - The Lamb Lies Down on Broadway

It's been more than 5 years since I posted here.  Honestly, I never thought I'd post again, but as I approach my "10th" birthday -- that's right, in a few short months, I'll be 10 years out from my live saving stem-cell marrow transplant -- as we enter into what surely is going to be a better year than 2020, and based on my blood brother Martin's incredible Hanukkah present, I figured it was time.

So let's start there... Martin is a lifelong Borussia Mƶnchengladbach fan... and for the last 7 years, I root for them just like they were from Philly.  They made the Champions League this year and are advancing in Group B.

So when these arrived in December, we were thrilled:

So what's up with the numbers?  It's our birth years: Floyd 2008; Orion 2010; and me... 2011 (the year of my transplant.)  Leave it to Martin to come up with the best present ever.  Where's Heather's?  Sports jerseys aren't really her thing, so Martin got her a warm fuzzy Mƶnchengladbach blankee (sorry, no pics.)

When I was diagnosed, Floyd and Orion were both in diapers.  Now look at them!  Back then, my medical team gave me about a 40% chance to live three years.  While there have been many challenges and injustices -- especially of late -- so many amazing things have happened as well, and this post is focusing squarely on them.

Here's some more BMGB stuff Martin brought when he visited us a couple years back.

We even got to watch a match on TV together.  Gladbach won!

And we got to see some sites.  Not gonna post a ton here, but here are a couple:

Martin even did the Light the Night walk with us!

What an incredible visit.  And that's just the tip of the iceberg.

I had an incredible journey at Salesforce and made dozens of lifelong friends.  You can read about that -- and my transition to Vineti -- here.

The Eagles won the Super Bowl!  Who'da thunkit?

Heather and I traveled to Mexico to see Phish, not once, twice, or even thrice, but FOUR times.  We even took the boys for the 3rd and 4th ones!

My band has played a dozen shows at Terrapin Crossroads including a show (and a song) with Phil Lesh!  Lots of audio here and some video here.  Here's a pic from TXR Grate Room.

We've also been very fortunate to find our dream house in the Loch Lomond area of San Rafael.  There's incredible hiking practically in our backyard.

So as we approach my 10th birthday, I am striving to live the healthiest, kindest, and most grateful life I can.  And I -- we -- couldn't have done it without the love and support of so many family and friends, many of whom actually read this post til the end.  :)

Thursday, December 3, 2015

You've Got One Life.... Blaze on!

Blogging Tunes: none -- super quick update

Light the Night 2015 was a smashing success.  The San Francisco Walk (click for pics!) was incredibly inspirational. We are making a difference! Here's a pic.

Team Salesforce

On a National level, Salesforce raised over $450,000.  Amazing!

Please see the ABC7 News story (click this link, then click the video, watch the mandatory 15 second ad and then advance to 01:53) for more information on my story, Light the Night, and Salesforce's participation.

"We're gonna keep doing this until there's a cure!"