Thank you to everyone who came out to THE BIG CLIMB on 4/30/2022 at Kezar Stadium! It was a a great event. The Team Greene page and my personal fundraising page are still accepting donations if you'd like to contribute.




Don't Look So Frightened This Is Just A Passing Phase

Monday February 7, 2022 - Day +53

Blogging Tunes: David Gilmour - Live in Gdańsk

So many things in life have phases.  From the recurring and predictable phases of the moon to the unpredictable phases of our kids as they grow up to our own life journeys.

From a phases perspective, stem-cell marrow transplant recovery is a bit of a conundrum.  If things go well -- as they are going for me (touch wood) this second time around -- the timeline for the first 60 days (Phase 1) and the 30 days that follow (Phase 2) is somewhat standard. 

Once we get 3 months out, things can get a little more fuzzy.  Why?  Well, first let's provide some quick context.

Towards the end of Phase 1, in addition to the twice a week visits and all the normal stuff they check in my bloodwork -- see previous blog entries for all sorts of data on that -- they do what's known as a Chimerism test, pronounced /KYE muhr Ih zum/.  Essentially, the purpose to check engraftment -- how well Martin's stem-cells have engrafted -- after allogeneic transplant.

They test a whole bunch of stuff from T cells, to B cells, to Myeloid cells as documented on the aforementioned link.  So I was thrilled to receive this text from Lisa (my amazing NP!) on Friday:

So for Phase 1 and 2 we'll be following all the guidelines, taking all the meds (sooooo many pills every day), and just staying in our lane as it were: getting lots of rest; exercising regularly; eating healthy; keeping stress down.  Focus on health and wellness!

Phase 1 will conclude with the removal of my Hickman Line -- since there's no need for IV drugs or transfusions -- which is scheduled for one week from today.  We'll also reduce my UCSF visits to once a week starting that same day.

Between now and the bone marrow biopsy (BMBx) at the end of Phase 2, it's more of the same, with possible tweaks to meds.

So what changes after the BMBx comes back clean?  And yes, it's going to come back 100% fucking clean.  Amirite?

Well, if you've been following along, you know that we've been steadily reducing the Tacrolimus during Phase 1 (from 2.0mg/day when I was discharged to 1.25mg/day at present.)  But, it's important to understand that this reduction in Tac is not the "taper" phase.  Meaning, we're currently just trying to keep the Tacrolimus in the 8-10 range.  As my body recovers and my metabolism increases, it takes less Tac to keep us in that range.  So we look at the labs every visit and adjust the Tac as needed.

But the ultimate goal -- in Phase 3 -- is to get the Tacrolimus to ZERO.  To do that, we need to completely wean me off it.  When we can get to that point, the new immune system will be fully up and running without a net, I'll be able to stop all other meds, and my energy level will approach 90%.

So why can't we just stop the Tac right now?  Remember, Tac is an immunosuppressant.  If we just cut it out altogether, Martin's immune system (as good as it is) would probably start doing a bunch of stuff it shouldn't (like attack some of my organs) and I'd likely instantly suffer from acute graft vs host disease (GVHD).

Even with a gentle, steady, intentional taper -- which we'll do from Day +90 through Day +??? (where ??? could be 365, 730, or longer!  Yes... years!) -- 35-50% of recovering patients experience some sort of Chronic GVHD, and there's the uncertainly of Phase 3 and beyond.

In my first go-around, I had some pretty serious GVHD in the form of joint and muscle constriction.  There's a blog post about that here.  Note that that post was more than a year out from transplant.

So how am I supposed to accurately predict how much energy I'll have to phase in work (or other things like going to Floyd's travel ball tourneys, rehearsing and gigging with Chum, traveling to LLS Board meetings, taking a family trip, etc.)?  There's really just no way to know.  It's gonna be one week at a time and listening to my body.

What I've realized over the last few months -- and I've talked to many of you (and my version of Wendell) about this -- is that I'm not good at dealing with the unknown and things I can't control.  I like to be in control of what's happening.  But the older I get, and the more crazy shit that happens to me -- and to other people around me -- I realize that the greatest lesson here is to figure out how to embrace (and not have anxiety about) the unknown.  Essentially, it's the serenity prayer: accept what I cannot change; have courage to change the things I can; and have the wisdom to know the difference.  #LifeLessons

So that's where we are.  More next week.  Thanks for tuning in.

Oh, and I need SF and Bay Area people to join my Big Climb team.  Look for a targeted marketing push later this month and let me know if you want to get more officially involved.

iwkia...a

Comments

  1. Round, round robin run round, got to get back to where you belong,.. <3

    ReplyDelete
  2. Loved reading this. It’s difficult to live in the present but that’s all we really have. I’m getting better at it as well. Sounds like things are slowly working I’m the right direction. That’s all one can hope for.

    ReplyDelete
  3. JG - thank you so much sharing. Your insights are a great reminder to stay centered and stop trying to control things that cant be controlled. Sending positive vibes from the frozen tundra of New England.

    ReplyDelete
  4. Thanks for sharing all the details, the positive, the scary stuff and how you are dealing with all of it. Strength is defined as the quality or state of being physically strong, a good or beneficial quality or attribute of a person or thing. Your strength inspires us all and this journey will change not only you and your family but the lives of everyone you allow to see behind the curtain. You are teaching us to appreciate life differently and for that I am grateful. Thank you for being you! There will be bumps in the road but you will conquer each as they come. One bump at a time. Hugs and love to you and your family.❤️

    ReplyDelete
  5. Thank you for sharing, John. It's nice to get these updates from you. Continuing to support you from afar - as are many others at LLS!

    ReplyDelete
  6. Wishing you continuing equanimity and positive progress. Love to you all, especially today (02/14)!

    ReplyDelete
  7. Awesome conclusion!! Neutrality to what is. Let go and let things flow as they should without ego control. If your higher self (or whatever power you want to attribute to your fate) has the wheel, letting go and letting them (the real YOU) do their thing will take you where you need to go, even if it's not where you think you want to or should go. Awesome #LifeLesson, dude. Keep it up!

    ReplyDelete

Post a Comment

Popular Posts