Yo, Philly!

Hey Philly Peeps! My oldest and dearest friend, Lauren "Bagel" Bacal Spike is once again leading the Philly Bleeds Greene team for the Big Climb at Lincoln Financial Field on Saturday May 11, 2024 supporting the Leukemia & Lymphoma Society.

Locals, please consider joining the team. Others, please consider donating to Lauren's campaign.

Too Busy To See Two Versions Of Me

Tuesday April 5, 2022 - Day +110

Blogging Tunes: Hirschmilch Radio Chillout

This is going to be a different blog post of sorts.  Sure, I'll give you the usual stuff: recovery update, Peloton output deets, stats on meds, some kids' baseball highlights, etc., but all of that is secondary to the elephant currently in my home office, which is essentially: how effing challenging the start to this year has been -- physically, mentally, emotionally.  How can I continue to be the primary energy source for my family and accomplish what's next in the midst of my body rebuilding itself?

The only way is through.  And as I go through this, I find myself fluctuating between being in a state where I am full of acceptance, positivity, openness, presence and gratitude vs being in a state where non-acceptance, anxiety about the future, self-doubt, distraction, and imposter syndrome rule the roost of my monkey mind.  It's my own Yin and Yang... Two Versions of Me.

The concept of Yin and Yang isn't just about opposites, it's about the unification of these seemingly opposite set of feelings... this wide spectrum of emotions.  It's the idea that opposite or contrary forces may actually be complementary, interconnected, and interdependent in the natural world, and how they may give rise to each other as they interrelate to one another (source: wikipedia).

So what am I doing to get myself to be more present so that I can spend more time in that first state?  Lots of things.

First, I've not only gotten back into The Daily Calm, but am now augmenting with Jeff Warren's The Daily Trip (both on The Calm app.)  20 minutes of meditation each morning is really hard for me, but man do I need it.  I'm on a 10 (week)day streak and plan to keep it up.  Talk about yin and yang, Jeff's style (and energy) is completely different than Tamara's and yet it is also so good.  

Tamara recently posted this great piece on her Facebook page including a quote from Pema Chödrön that reads:

There is this illusion that many people have, that we are on a path to get somewhere. And once we get there, everything will fall into place and happiness will be ours. But life doesn’t work that way. As soon as we arrive, new challenges surface, and we have to work through them and grow. And we do this over and over. Life comes together and it falls apart, it comes together and it falls apart. Once we begin to accept that this is a part of life, and perfection is just an illusion, we begin to more easily open to all the aspects of life. Grief, relief, Sadness, joy, it is all part of this incredible life we are walking. 

The bold emphasis is mine.  Over the last few years, and certainly over the last 7 months, I feel like my life has been coming together and falling apart on multiple fronts.  This isn't all about the leukemia -- though that's the biggest one for sure.  I started seeing my Wendell a couple months before my relapse for help with some of my other challenges.  I thought it might be a relatively short engagement, but I'm still seeing him (just about) every week, and our sessions are an essential part of my mind/body recovery from AML 2.0 and my overall well-being.

Related to the above, a very good friend, and fellow cancer survivor, has been forwarding me these daily Lent emails.  Now, I'm not religious in the least, and when I do celebrate/practice it's typically for the Jewish High Holidays, but some of this stuff is just so good.  Pema's quote above appeared in one of them. 

Here are a few others resonate with me:

Bad things will happen. Each of us will face hardships and challenges, but probably not the ones we are expecting. What ends up happening is often completely unexpected. So what is the point of worrying? We must be able to sit in the uncertainty.
The bad news is you’re falling through the air,
nothing to hang on to, no parachute.
The good news is, there’s no ground.

 — Chögyam Trungpa
What do you worry about?

When you plant lettuce, if it does not grow well, you don't blame the lettuce. You look for reasons it is not doing well. It may need better soil, or more water, or less sun. You never blame the lettuce. Yet when we have problems with our friends or family, we blame the other person. If we knew how to take care of them, they would grow well, like the lettuce.
Blaming has no benefit at all, nor does trying to persuade using reason and argument. That is my experience. No blame, no reasoning, no argument, just understanding. If you understand, and you show that you understand, you can love, and the situation will change.

-  Thich Nhat Hanh
The heart is like a garden. It can grow compassion or fear, resentment or love. What seeds will you plant today?

We risk the life we’ve known to discover something new. The unknown territory will open before us only to the extent that we turn our whole being courageously toward it. And then we must venture wherever the road leads us, in spite of the dark, in spite of the quivering of our heart.
- Jack Kornfield
Do you have the courage to venture into the unknown?

One spring, a girl was in the garden and she found a cocoon. Inside was a butterfly struggling to break free. For hours she watched it straining its tiny limbs against the walls, making no progress. And she cried for the little creature.
Finally the girl went inside and found some scissors. She quickly cut an opening in the cocoon and the butterfly emerged easily - too easily. It looked strange: body swollen, wings shriveled. It would never fly.
Years later, she understood that the butterfly needs to struggle. The work of straining against its cocoon allows it to grow wings and become its true self.
How can your struggles help you grow?

So yeah... meditation.... therapy... Lent email forwards... these are some of the arrows in my quiver as I emerge hopeful from this cocoon of AML 2.0 (fortunately without the help of the girl mentioned above.)

It's so easy to read these quotes and just nod your head... "yeah, that makes so much sense!" but then what?  What I've discovered is that just reading will not allow me to make transformational change my life.  I must be intentional about what I want to create for myself.  And I must have compassion for (and be kind to) myself when I try, fail, try again, fail again.  Of course, with more practice, I'll try and succeed sometimes!  And then I can acknowledge that and celebrate.  Anyway, I'm working on it.  Day by day.  Week by week.

I'm also trying to draw strength from inspirational people and -- in this case -- fellow battlers.  Suleika's recent relapse really shook me.  Her first battle was waaaay more intense than mine and, from the sound of it, so is the second.  Incredibly, our leukemia battle timelines -- including the unlikely 10+ year relapse -- are nearly identical.  

Her resilience is simply amazing.  If you haven't seen/watched this story about her and Jon Batiste, it's worth your time.  Her free newsletter -- The Isolation Journals -- is awesome too and makes my blog look amateurish by comparison.  The latest episode entitled "The Creative Contract" is fantastic.  Read it here and/or subscribe to her Journals here.  Oh, and if you know Suleika personally, can you please share this blog with her?

OK, so what else?  Eating right and regular exercise.  My body literally yells at me that I need a real workout every day.  How?  If I don't workout, I am literally unable to sleep without a sleep aid.  And of course, if I take a sleep aid, I wake up foggy rather groggy.  OTOH, if I get a good workout, I'm able to sleep much better (but still not great.)

If I really push the workout hard -- and do things like stop drinking water after dinner, so I don't have to pee umpteen times in the middle of the night -- I have a chance of sleeping (mostly) through the night.  I think I've had maybe 2 good nights of sleep over the last month.  It's annoying, but it's just part of the recovery and it's what's happening right now.

Before we get to the recent Peloton stats (and pics), I want to acknowledge my blood brother Martin -- and make sure this pic is first so it shows as the preview image -- without whom I'd be dead twice over.  Martin's soccer team (Borussia Mönchengladbach) is hanging by a thread in the Bundesliga Standings (aka Table) so I made myself a cortado in my Borussia mug this morning for good luck.  Wow, my hair's really coming back.  And unlike my beard, it's dark!  Prost, BB!

OK... Peloton stats.  I'm starting to ride much more consistently.  The only lull was when I got my bone marrow biopsy on the 17th and the few days that followed.

Once I got back in the saddle -- get it? -- I finally hit 200 output on a 30 minute ride.  Once with Emma and then once on my own.  My pre-relapse best is 253.  So 202 is 80% of that.  Does that mean I'm at 80%?  I wouldn't quite say that, but I'm getting there.

Then, yesterday, I got 198 on a ride that included 6 minutes of arms.  

I wonder if that means I could hit 210 or even 215 on a regular Olivia ride.  I love so many of the instructors -- and not just the ladies!  I'm a huge Denis fan -- but Olivia is an absolute machine.  She's demanding but she's also really positive, encouraging, supportive, and fun.  I know if I want to push myself, she's the go-to.  I don't know how anyone can get to the top of her resistance ranges though.  When she says 45-65, I'm lucky to be at 42 or 43 if I want to hit her cadence.  Crazy.

Ah... it's almost 2:30p.  Pre-relapse, I'd make an espresso right about now.  Not anymore.  I have my morning coffee drink (while I do the Wordle and the Quordle) but that's it.  Now it's either power-nap or power through.  Today it's the latter as I want to author as much of this blog entry as I can before my 3:00p meeting.

I'm also starting to play piano a little more regularly.  My Phish Tribute Band (Chum) is actually playing a gig in the city next Friday (4/15) at Brick & Mortar.  I'm not quite ready for a full gig, so Jordan Feinstein will be playing keys on this one, but I'm going to play a few songs towards the end of the first set so I've been practicing.  If any of y'all locals wanna come out and say hi you can get your tickets here.

Alright... quick meds update.  We've continued to taper the Tacrolimus ~7% a week (by removing one pill each week) for the past two weeks.  That's on top of the initial 15% reduction.  So, this week I'm only taking 10 out of the original 14 pills.  That's 29% less than I was taking a month ago.  As we continue to taper, we're going to need to watch for GvHD.  So far, there hasn't been any.  I see Lisa this Thursday and hopefully next week we'll go down to 9 pills.

Will we be able to remove one pill a week for the next 10 weeks and be done with it?  I highly doubt it, but we'll see.  Last time it took quite a bit longer to get completely off the Tac -- closer to a year I think.  It's all based on how much GvHD there is.  Here's some info on GvHD.

Avid readers will remember that we swapped out the Voriconizole for Posaconizole so that the inevitable sun exposure I'll be getting won't be too damaging.  For the past two weekends I've been in Woodland, CA for Floyd's travel tournaments. This is how I dress.

jg in full sun gear

I was also able to stop taking two other meds completely.  I don't even need my 7x4 meds box anymore... just the normal 7x2 (AM/PM): one handful in the AM and another in the PM.  We're definitely getting there.  We're getting there.  We're getting there.

Back to baseball.  Over the course of two weekends in Woodland, Floyd's team went 4-3-1.  The competition at this level a huge step up from anything he's done before.  In fact, in one of the games, he got the only hit off this stud pitcher who is supposedly one of the best in the state.  The Stings Volt team photo mom got a good picture of him all smiles after getting on base.

Happy Floyd

Here's a shot of Floyd with his two buddies Cohen (also on Stings) and Cooper (on Lamorinda).

Floyd, Cooper, Cohen (2022)

These three were on the same Little League team when they were just entering Majors.  That coach obviously had a great draft.  Here they are from that Giants team in 2019.

Floyd, Cohen, Cooper (2019)

In addition to playing on Volt, Floyd is playing San Rafael Juniors (which is also the 60-90 full sized field.)  Did I mentioned the competition at Volt's tourneys is tough?  Floyd is probably the #5 or #6 pitcher on that Volt team.  On Juniors?  He's #1. He's only played two games for Juniors (because travel ball takes precedence when there's a conflict)  Here are his lines for those games:

That's 8 innings, no runs, no hits, 19 strikeouts, and two walks.  If he could do that on Volt, he'd be getting recruited to colleges. 😂

* * * 

Picking this blog entry back up after my Pelo ride.  And damn, did I nail my 210-215 prediction!  Sorry Emma, Hannah, and Denis... Olivia is now my trainer -- for the intense rides anyway -- for the next 4 weeks as I prepare for the Big Climb.

I'll talk more about the Big Climb in my next post.  Besides, y'all have the info in the header of every blog entry.



  1. Great post, JG. A real sign of healing.

    Pema’s book, “When Things Fall Apart”, has gotten me through some tough times. A quick read and highly recommended.

    Self-forgiveness is huge. Also gratitude for even the most f%cked up challenges is key. All experiences are precious. Without them, you wouldn’t be the amazing person you are. I’ve found that to be a healing perspective, as well. 🙏

    Keep on…

  2. JG - great stuff. Needed to read some of the things you wrote right now ("Life comes together and it falls apart") - really landed for me at a good time. Thanks for sharing your journey, and my thoughts are with you and your family. And I'll look for you on the Peloton!

  3. Great post John. I relate to so much of what you're talking about as you go through this. Suleika's relapse has thrown me too. It triggers a lot of worry in me. The only way through it is through it!

  4. Thanks for the update JG. Nice progress on the Peloton stats. My favorite instructor is Matt Wilpers, he does the longer interval rides, 60, 75, 90 minutes. It's really helped me train for outdoor rides and it's amazing how much output you can generate on a Powerzone Endurance ride.


Post a Comment

Popular Posts