May 31, 2024: jgwkia has moved to substack


JGWKIA (jg will kick its ass) has moved to substack. You can access (and subscribe to) it by clicking here.

The full URL to my substack is http://jgwkia.substack.com/. There will be no more new posts here, and eventually jgwkia.com will point there, not here. Bye bye Blogger!




Until the Sun Comes Up Over...

Thu Apr 18, 2024
AML 3.0 treatment - Day 31

Today I'm thinking about two Sheryl Crow songs... one that I like and one that kinda bugs me.

The blog title and this image represent the one I like. It's catchy, has amazing Wurlitzer (electric piano), killer pedal steel, a great message, and really clever vocal arrangements. Still don't know it? FFS, click the first link.

The vocal refrain on the other one kinda grates on me, but the lyrics are on point: "If it makes you happy, it can't be that bad..." Lots of examples of this in my life these days, big and small -- like our special photo album, right Ben and Rob? -- so after a short medical update, that's going to be the focus of this blog entry.

First let's set the scene. Yesterday, I thought about heading to Venice and Santa Monica for my "day off," but BmBx-gate kept me sitting by the phone (and fasting) until early afternoon. Once we got the word that the second bone marrow biopsy wasn't going to happen, it was too late to go anywhere, and I really wanted to watch the Phils and Sixers. Plus, I needed to get food and wanted to shop a little bit. The whole thing pissed me off and I updated my last blog post to include lots of "angry" emojis. But for what?  

We've since learned that, yes, despite the extra blood draw we did late yesterday afternoon, we do, in fact, need to do another bone marrow biopsy. This has been scheduled for tomorrow (Friday) at 9:00am (arrive at 8:00a) at a nearby hospital in Santa Monica. So after a rest-in morning, a shower, some texting with "Limby," and some stretching, I decided to motivate. On the docket for today:

  1. Dry run to the Santa Monica hospital (channeling DHG!) so I get an idea of how long it takes to get there, the parking sitch, etc.
  2. Stop for coffee and a blogging session
  3. Hit up a go-to spot for lunch
  4. Walk on the beach a little (Fat Sam? Gummy?)
#2 (Primo Passo) and #3 (either Gjusta or Ggiata) are, of course, recommendations from Chad, my Westside guide. Don't ask me about the names of those lunch places. Things are strange down here in SoCal. Currently we're waist-deep in #2.  Knew it was a good sign when I got rock star parking.


My car is the black Golf in the foreground and you can see my destination highlighted on the corner across the street. I knew precisely what I had in mind as I was walking in, and to my delight it was on the menu exactly as I wanted: a "half-caf cartado." It's so nice when I don't have to explain what a cortado is.


And look at this... a thing of beauty.


This makes me happy. And I acknowledged the dude who made it and told him that I appreciated the love he put into it.

Avid jgwkia.com readers will remember the "Gratefulness" screenshot I included on my Surfing with the Alien post -- others can click the link.

We all have our struggles, and all of our struggles are absolutely real. Sometimes the despair we feel in the midst of our struggle(s) is exacerbated by self-induced guilt for having the struggle at all. Like, "OMG, other people have it so much harder than I do, I can't believe I'm feeling bad about <this or that>." Well, that's silly. We feel what we feel and there's no reason to feel bad about what/how we feel.

But what we can do is take a good look at how we respond and react to things and, while we can't change anything about what we did (or didn't do) in the past, we can choose how we want to react in the present and have real intention about the person we want to be in the future.

This may sound silly, but when I'm trying to reinforce this for myself, sometimes I like to read Jack Kornfield quotes. They aren't all great, but some of them are really spot on. Here's a site with a list. I like the ones that make you think, like this one: 

Forgiveness is giving up all hope of a better past.

This reminds me of a 45-second video that came across my Facebook feed a few weeks ago which enumerated 3 things one should stop doing if one wants to be happier. I can't seem to find the Facebook Reel (which showed the actual guy speaking) but here's a YouTube video which has the audio. Don't focus on the person in the video -- I mean you can if you want -- rather, just listen to the words.


To me, the first point in this video is exactly what Kornfield is getting at in the quote above. Changing the past is impossible. Regretting the past is a choice -- and a bad one.  The explanation on the Kornfield quote site says: 

"... forgiveness involves relinquishing any longing for a different past, accepting and making peace with the experiences that have shaped our lives." Also that "holding onto resentment, regret, or anger only serves to hinder personal growth and happiness." Wow. This is big stuff. It goes on... "Forgiveness empowers individuals to let go of the burdensome weight of past grievances, freeing themselves to embrace the present moment and nourish their well-being. By releasing attachments to an idealized past, forgiveness enables one to find solace, healing, and the possibility of a brighter future."

Do I wish that I never got leukemia in November 2010, a week after we closed on our first house? Do I wish that Heather didn't have to go through everything in the months (and years) that followed? Do I wish that I had made some different decisions back then? Handled some of my struggles differently? Well, at this point, I don't wish or not wish anything. All of that is just part of who I am. It's part of my life... it's part of my family's life. It has shaped our kids' lives. It. Just. Is. Is there still healing and repairing to do? Yes. Is there regret? No. I'm done with regret.

Do I wish I didn't recently relapse and that I wasn't in treatment now? This is a harder one for sure, since it's basically the present. Truth is, I'm really trying to live the mindset of being grateful for everything that I have (vs longing/wishing for things that I don't). What is the point of the latter? I don't know what the future will bring, but I'm not going to worry about it -- that's the second point in the video above.

I recently lost David -- my AML pen pal -- a guy I'd never met, but who I'd been texting with for a couple years. How did we connect? When our friends (the Franklins) moved from San Rafael to Texas, David's son Jack went to Middle School with Floyd's friend Teddy. When David relapsed, Kelly (Teddy's mom) connected us.

All I really know is that this guy -- two years younger than I -- battled his ass off with relapsed AML, and he and I corresponded about all the crazy ups and downs of this journey, clinical trials, traveling for treatment, how it affected our work, our family... everything. And now he's gone... and his wife and son now have a real struggle on their hands -- a struggle no one should have, yet so many people do. Fuck AML.

Soapbox: Your struggle may be 100x worse than David's wife's. Or it might be 100x less intense or anywhere in between. And your struggle is absolutely real. Struggles shouldn't be compared. That said, it's often useful to put things in perspective. I remember when I used to do laps at 11-Long (UCSF blood cancer floor) and I saw some 2-year old on a gurney all hooked up to chemo. I couldn't even look. A baby with blood cancer? How's that for a struggle.

So today I'm practicing how I want to be. I'm being grateful for the little things. Like that I got to see Floyd and Heather last week... like that the Sixers won last night... and like that I got to have a real day off today and am enjoying a top-notch sando a block from Venice Beach. And that I'll get to FaceTime with Heather tonight, and webcast Phish at the Sphere... all before getting back to real life tomorrow where they'll put a drill into my back and where I'll be restarting chemo soon enough. And I'll be grateful for all of that because it will give me a chance to survive.


Am I tempting fate by having some lettuce and tomato on my Ggiata Classic Italian? Maybe. But isn't that what Posaconizole and Acyclovir are for? OK, #3 complete. Lemme see if I can go do #4 for a bit without getting too much sun.

* * *

Venice Beach mission accomplished. Two and half short months ago, when we got the news of the relapse, I would never had thought in a million years that I could have an afternoon like this, yet here we are. For this I am extremely grateful.


The sando above came from the place under the white arches behind the black jeep on the left.


A few blocks from the Venice sign and approaching the beach. No sign of Fat Sam or Gummy.


Is this supposed to be a V? Heading toward the beach now...


Lovely!


Beautiful!


Wow. I guess the tide was just right for a shot like this. Amazing.

I really do love the water. And it doesn't have to be ocean. We are so lucky to live within walking distance of one of the most beautiful marinas in the world. It brings me such joy to walk the Loch Lomond jetty and see all of the people out and about. Can't wait to get back home and walk this with you, boo!

To me, one of the best parts about a walk on the beach or jetty walks is seeing elderly couples who have found a way to stay healthy, happy, and connected. That's the future I'm intending for myself and my family.


I took this photo of the Loch Lomond marina on my Jan 1, 2024 6.6 mile hike. It was the beginning of my "dry January" and my healthy fitness month. Whoda-thunk that 31 days later hikes like this would be a distant memory. I'm grateful I was able to take that hike and so many others before it.

Walking back from the ocean, I saw this dude in a Phillies shirt. He saw my hat and hooted, "Go Phils!"


And no, those aren't beers, they're waters. Come on, people.  Here are a few more pics I took:




And right as I drive out of Venice I saw this:


Can you see what the sign says? "Cafe Gratitude." Well isn't that just the perfect way to end the afternoon!

iwkiaaaa

Comments

  1. Thank you John. Yes, you inspire me. Those 3 Things to Make You happy are hard as hell. Yes, I've had some help prioritizing my life's goals and recognizing how grateful that I truly am...some days are tougher than others. I'm glad you got to Venice Beach. Beautiful pictures. Yes John, you inspire me. I'm rooting for you!
    Thank you my friend. -H

    ReplyDelete
  2. “ Forgiveness is giving up all hope of a better past” - love this quote and thank you again for sharing your journey and grateful gratitude moments! Great reminder for me to slow it down a little and enjoy where I am. Much love to you JG!

    ReplyDelete
  3. Hey! It looks like maybe I can comment as me for a change!

    Forgiveness.. best stuff. Such a powerful life hack to release the clap. Gratitorbst assswell. Keep it up!

    As for your beach jaunt, if you really wanted to do Fletch justice you'd have been in a kaftan and on roller skates. I could see it.

    ReplyDelete
  4. Sending thoughts of love and support. (Except kinda meh on the Phillies stuff😎). Do you know how long you are likely to be in SoCal? Love to Heather and the boys as well. Let’s talk when you are in the mood.

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  5. Beautiful. Sending hugs and healing vibes your way πŸŒˆπŸ’«πŸ«ΆπŸ’•

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  6. Venice Kush? Drugs on our beaches, shame of the city?

    John, I admire you, and how by setting intentions and sheer force of will, you are able to generate such amazing gratitude and perspective. ❤️

    PS - that sandwich looked awesome.

    ReplyDelete
  7. You inspire me often when I’m feeling down. Living a life with no regerts (lol watch the movie the millers if you need a laugh) is very smart. We shouldn’t waste our time or energy on this. Enjoy the present which is what you are doing. Being alive, able to enjoy the sun, the sandy beach, art, food and loved ones.

    ReplyDelete

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