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No stem cells for you!

10/1/2017

10 Comments

 
Sunday, October 1st, 2017
Richmond, Virginia

Health update

I apologize for the very long delay since my last post, but it's been an eerily quiet month with nothing substantial to report until now. If you'll recall from my last post, this is where we left off:

The official name for my current condition is non-cirrhotic portal hypertension, which decodes as: elevated blood pressure in the veins leading back to the liver that is not caused by damage to the liver itself... Until this hypertension is dealt with, any bone marrow transplant takes a back seat.

It turns out that I misunderstood what non-cirrhotic really means. Refining my definition from above, it should have read: elevated blood pressure in the veins leading back to the liver that is not caused by cirrhosis of the liver. There are plenty of other ailments that might plague the liver and cause portal hypertension.
Picture
Click to enlarge

So where do we stand now?

Here is the capsule summary of where we stand right now:
  1. The disease in my bone marrow is gone
  2. The disease in my spleen and elsewhere has been substantially eliminated
  3. A stem cell transplant is needed to knock out the last vestiges of disease
  4. A stem cell transplant will fail (i.e. death) with an unhealthy liver
  5. Circumstantial evidence (i.e. portal hypertension) indicates an unhealthy liver
  6. A liver biopsy is needed to confirm or deny that indication
  7. I am not healthy enough for a liver biopsy (my platelet count is too low)
  8. In light of (7) and (8), we must assume that the liver is unhealthy
  9. A stem cell transplant is therefore not an option
  10. The last vestiges of the disease remain unchecked
That last point is the real kicker, of course. The liver specialists outlined two general approaches to #10:
  • Do nothing (i.e. palliative care)
  • Do something (e.g. a clinical trial or experimental therapy)
Assuming that we're not prepared to proceed quite yet with the first approach, we will be meeting with my oncologist at Johns Hopkins soon to discuss what the latter options might be. We'll keep you informed about what is discussed.

On the positive side, I haven't felt better all year! Go figure.

About the title of this post

For those of you who do not orbit in the Seinfeld universe, the title of this post is a reference to a classic catchphrase from that show. Check out the accompanying video to see more.

Kids on the move

All four of our kids are currently professionally displaced for one reason or another:
  • Cameron was evacuated from St. Croix in advance of Hurricane Maria
  • Nathan is in San Antonio, Texas at a Petco conference for senior dog trainers
  • Ian continues his adventures in San Diego, now extended through Thanksgiving
  • Eli is in Jacksonville, Florida to observe an occultation of Triton, one of Neptune's moons
Alison and I continue to live vicariously through their various adventures.

Books

I've knocked off a few books in the intervening month. They were:
Picture

Notes from a Small Island

Bill Bryson is a favorite author of mine, one for which I try to read everything he's written. Notes from a Small Island chronicles his three-week "goodbye tour" of the UK before relocating to the United States around the turn of the century. I enjoyed the book, but it quickly fell into a regular pattern: for each town he visited on the tour, he was almost always surprised, pleasantly or otherwise. Plus, having never heard of almost any of the towns he visited, I found the book seemed repetitive. Native Brits might find otherwise.

Picture

Still Foolin' 'Em

The full title of this book is actually Still Foolin' 'Em: Where I've Been, Where I'm Going, and Where the Hell Are My Keys? Written by Billy Crystal, it is an informal memoir of his unexpectedly rich and varied life. It's well worth the quick read.

Picture

Glass Houses

Written by Québécois author Louise Penny, Glass Houses is the latest installment in her Inspector Gamache series. I recommend that you read them all, in order of course, in order to understand and appreciate the expansive story arc.

Picture

The Social Animal

I have a bad habit of always finishing a book that I've started, even if I need to set it aside and come back to it a few years later. The Social Animal: The Hidden Sources of Love, Character, and Achievement, written by The New York Times columnist David Brooks, is one of those books. This densely written book falls squarely in the realm of social psychology and I expect that I could have finished it more easily if I had read it back in college when my mind was a bit more nimble. I do recommend this book if you have any interest in the subject matter, but make sure to take it slowly and easily. It's not a page-turner.

Picture

Robert B. Parker's Kickback

Robert B. Parker wrote over 70 novels in his lifetime, 40 of which concerned his best-known protagonist, Spenser. After Parker died suddenly in 2010, his family selected author Ace Atkins to continue the Spenser series. He's written six Spenser novels so far; this is the fourth of them. If you are already a fan of Robert B. Parker, then by all means continue your reading with this book. If you've never read Parker but enjoy crime fiction, then definitely start at the beginning with his debut novel, The Godwulf Manuscript and continue from there.

Tidbit

This past month has also been a busy one for crossword puzzles. In the past, I've always enjoyed doing them (for example, if I saw a half-finished puzzle lying on a coffee table) but it is only recently that I've switched into daily mode. Each day I do the puzzle from either The Wall Street Journal or The New York Times. On more ambitious days, I do both!

When doing these puzzles, you can't help but pick up new words, but not necessarily words that you will ever have the opportunity to use in everyday speech or even writing. Case in point: a recent clue was simply Stage direction and the answer was...
Picture
 Exeunt is borrowed from Latin, the third-person plural present indicative (yikes) of the verb exire, which translates as "to go out" or "to leave." When I run across words and explanations like these, my response is always the same:
Picture
10 Comments
Ruth Ann Scott
10/2/2017 02:51:41 pm

My thoughts, prayers and laughs are with you today and everyday. You are a funny man!😍

Reply
Robert and Janet
10/2/2017 03:13:09 pm

Hey there Josh, thank you so much for your latest update about your progress. It always greatly concerns us when we haven't heard.

We know it to be frustrating road for sure, and can't imagine the pain and suffering you and your family have endured. That said, with the positive news you have received and your feeling better than ever, we trust that God is leading you to the conclusion we all believe to be possible - a COMPLETE RECOVERY.

We just arrived back from Boston, and are faced with catching up with work by being gone for a week. I'm on the way to volunteer for RAM come Thursday for 4 days. Once I return we'd like to stop by next week to give you a warm hello if you are feeling up to it. We'll be sure to reach out prior to stopping by.


Keep being courageous and faithful! When it comes to fall, all you need is the size of a mustard seed, God will do the rest.

Love you,

Janet and Robert

Reply
John Simmons Chappell
10/3/2017 08:55:14 pm

Cheers to you and your support of Alison and Josh.

Reply
Trish O'Connor link
10/2/2017 05:46:36 pm

My thoughts and prayers are with your whole family at this time. I am glad you are feeling better, at least!

I continue to do reasonably well on Opdivo. I hope they can find something that works for you.

Reply
Jennifer Payne
10/2/2017 07:16:45 pm

In my desperate attempt to find some positive news in your latest post, other than the good review of the Billy Crystal book, I will take some comfort in knowing that at least one Notre Dame alum does not have cirrhosis of the liver. Thank you for that.

Reply
Bev Bley
10/2/2017 08:28:55 pm

Oh, Josh. So good to hear from you. All the kids are incredible and so good to hear what they are doing. Such energy and enthusiasm. I am glad to hear that you feel better than you have but am concerned for what might be forthcoming in experimental sources and also hopeful. You and Alison have been through so much. I think you are back in Richmond from your map. We just got back from Maine tonight and you know how long that trip is. Would also love to see you both. We are headed to Spain in a few weeks (always traveling when countries are in flux). Love to you and Alison.

Reply
Beth Davis
10/2/2017 09:33:36 pm

You'd think that the word exit as in exit right would suffice! Gees! Thinking of you lots lately....even though health protocols have stalled for now, I pray that there will be something that your team of doctors can figure out...I am happy to hear you are feeling well and have the stamina to read...Love you and Alison lots....You are a super hero in my book. (I'd love to visit soon!)

Reply
John S. Chappell
10/3/2017 08:52:01 pm

A client recommended “a gentleman in Mosco” by Amor Towle’s. I haven’t read it yet, but she is a wordsmith, and highly enjoyed it. I hope you are feeling better Josh, and continue to stay at the top of the refrigerator list.

Reply
Santhosh George
10/6/2017 09:37:12 am

Hi Josh,
Good to hear from you. My prayers and best wishes are with you. Keep up the good fight!!

Reply
MARIA REARDON
10/20/2017 01:13:12 pm

Hi There Josh and Alison... I miss you much and I am so glad to hear that you have been feeling good lately. I have been thinking about you both. This fall season reminds me of our hike to Cold Mountain with the dogs... what a wonderful day that was, and you first introduced me to Bill Bryson's book A Walk in the Woods. I'm not an avid reader of his works like you are but that has to be one of his best... so humorous and I found myself laughing out loud. :)
Maria

Reply



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    Joshua Golub

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      • Delisio Thanksgiving 2017
      • Becca's 21st
      • Liesl's 50th
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      • 2005 Droppleman Reunion
      • 2010 Droppleman Reunion
      • 2011 Droppleman Reunion
      • Nanny's 70th Birthday
      • Random Collection
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      • Dave's 80th Birthday
      • Corrotoman 2020
    • The Golubs >
      • Holiday Letters >
        • 2020
        • 2012
      • 2020 >
        • Bethlehem 2020
        • Circle Quilts 2020
        • Ginger's Shower 2020
        • Josh's 55th
        • Reservoir Hollow Trail 2020
      • 2019 >
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        • Eli's Sendoff 2019
        • July 4th 2019
        • Madagascar 2019
        • NYC 2019
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        • Thanksgiving 2019
        • Tucson 2019
      • 2018 >
        • Alison's 56th
        • Botanical Garden
        • Christmas 2018
        • Cincinnati 2018
        • Dad's 75th
        • Easter
        • Eli's College Graduation 2018
        • Rachel 2018
      • 2017 >
        • Alison's 55th
        • Brooklyn Golubs in Lexington
        • Indianapolis
      • 2016 >
        • Matt's Graduation
        • Nathan's Pets
      • 2010 >
        • Rachel's Wedding
    • The Immigs >
      • Aunt Eileen's Memorial
      • Uncle Bill
      • Chaz's Wedding
    • The Normans >
      • Dave's 65th
      • Nancy's Bridal Shower
      • Nancy's 27th 2017
    • The Roberts >
      • Mom's 75th
      • PopPop
      • PopPop's 60th
      • PopPop's 75th
      • The Roberts Random Collection
    • The Scarpellos >
      • Lucia's First Birthday
      • Baby Joshua Joseph Kenneth Scarpello
      • Josh's 3rd Birthday
      • Josh's 5th Birthday
    • The Simmons >
      • John and Alan's Wedding
      • Camping with Will and Stacey
      • Cam and Nancy's Wedding
      • Panama City 2004
      • Ian Fall 2020
    • The Zbars >
      • 2006 Zbar Reunion
      • Uncle Bert's 80th
  • Friends
    • Otters
    • 2020 >
      • Carson Trexler 2020
      • Girls Walk 2020
    • 2019 >
      • Edenton 2019
    • 2018 >
      • Ingersolls in Richmond 2018
      • With Beth at River 2018
    • 2017 >
      • The Steps of Church Hill
    • 2016 >
      • Michael Zacharias Wedding
    • 2011 >
      • Marie's 50th Birthday
    • 2010 >
      • Edenton 2010
  • Blue Dove
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