The Waiting is the Hardest Part, Day #27

I’ve been blessed to hear from many cancer survivors – all of them an inspiration – and nearly all of them quote Tom Petty:  “…the waiting is the hardest part” (or maybe Tom quoted them?!).  Either way, I totally agree.

Today I received results of bone marrow tests (negative = good), and Sjogren’s Syndrome (positive = bad).  I plan to connect with the most famous Sjogren’s patient Venus Williams as soon as I find someone that knows her (anybody have her cell #?)!  Off to the rheumatologist to find out what’s next on that front…  Another ‘uncurable’ to add to my list.

Yet my burden remains light (Matt 11:30) and I continue to lift up others in prayer with far greater burdens (every resident of Houston and Florida; friends Tom and F with heavier cancer burdens).

Next steps:

  1. Radiation Consult, 9/25 8am
  2. Johns Hopkins 2nd Opinion, TBD
  3. Radiation CTSIN/Fitting, approx 10/1
  4. Radiation Treatments, approx 10 starting 10/15?
  5. Rheumatologist Appointment, TBD
  6. Play in 2018 USTA US Open, 8/27/18 (first I have to beat Sjogren’s, then I have to learn how to serve!)

Observation #1

I continue to be humbled by the number of people praying for me (today at Chick-Fil-A: car window opens, “I’m praying for you” friend Sharon yells out the car window!).  THANK YOU!

With 9/11 this week I feel like I double-dipped at the Prayer well..  Again, thank you so much for all your prayers.

Observation #2

As noted, waiting stinks, I’d like to get to the ‘remission’ part as fast as possible.  But I also know that many people need those resources more than I.  I am trusting my doctors to keep me on the best path (especially since so many of you prayed for them!).

Observation #3

I was greeted at my bone marrow biopsy with a huge hug from Dr. Alfred Leal.  Now when I think hug, the first person I think of is Charlie “Tremendous” Jones, who gave the best hugs to everyone!  Now I only met Charlie twice, but I have been surrounded by brothers and sisters that he influenced through a bible study he started many years ago, that continues on today on Tuesdays at 7am (yes, you are invited! – PM me if interested).

Dr. Leal treated Charlie during his cancer fight, and we had a great conversation about him.  When you really choose to follow Christ, you start seeing signs of Him everywhere, and you know that He is in front of you everywhere you go.  That hug proved that theory again for me for the 1000th time.  Thanks Dr. Leal and all my Tue “Tremors” study mates!

Observation #4

My caffeine delivery processes continue to improve.  I have not had aspartame since Day #1.

Coffee (the best thing ever) and I continue to wrestle each other.  I believe my biggest problem is that I’ve drank some BAD coffees in my time.  Without an underlying coffee addiction, it was easy to abandon coffee after those experiences.  Some friends are introducing me to better coffee, and they are drinkable.  Still no addiction and still not my #1 go-to in the morning, but improving.

I also am trying out the SodaStream option, and some water mixes.  Thanks to Turkey Hill and Rutter’s for adding ‘KickStart Blackberry’ as fountain options!

Observation #5

So I heard “anti-inflammatory diet” and “Sjogren’s” in the same dialogue regarding treatment.  Looks like I’ll be heading in that direction (I know, I know, I should be heading in that direction REGARDLESS childhood friend Erin M would be saying right now)..  I am hoping that does NOT exclude caffeinated beverages!

Observation #6

Recently a friend posted the question, “if we were all forced to wear a warning label, what would yours say”?  What a great idea, I imagine all the relationships of my life going a lot differently if I could’ve just given them my warning label.  After a few seconds, mine was obvious:  “Ignore the foul, abrasive, crunchy outside. The good stuff is inside!”  Thanks to all of you who tolerated that outside and got to know the inside!

God Bless!


Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”
— Matthew 11:28-30

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