Month: September 2017

Radiation consultation at Ortenzio Cancer Center with Dr. Joella Wilson-Dagar is done, the radiation fitting is scheduled for Mon 10/2.  The 12 actual radiation treatments begin approx a week later.  Sore throat, skin burn, fatigue side effects – bring it on!

The next step on the Sjogren’s path is a first meeting with a rheumatalogist on 10/18.  I continue to research best practices in this area, “anti-inflammatory diet” has popped up most often.  Venus still hasn’t called.  I consider the ‘fatigue’ symptom of this disease my mortal enemy and he will not win!

Next steps:

1. Radiation CTSyn/Fitting, 10/2 09:00
2. Radiation Treatments, 12 starting approx 10/9
3. Johns Hopkins 2nd Opinion, 10/13 11:00
4. Rheumatologist Appointment, 10/18
5. Hike Colonel Denning Flat Rock trail again:  NEVER!

Observation #1

Still surrounded by a cloud of witnesses and prayer warriors, I am humbled and very grateful!

Observation #2

I’ve found a few coffees that are drinkable.  Still not a natural ‘go to’ but I can do it now in a few recurring situations I find myself.  Enjoying the aspartame-free SodaStream world, but the Mt Dew Blackberry Kickstart has risen to #1.  If only I could merge Kickstart with SodaStream (ie a syrup I could buy in bulk).  Anybody that can navigate those channels?

Observation #3

Hard to believe 40 days have gone by since I first heard, obviously a roller-coaster of emotions. The Thu night I first heard I thought I might be in treatments on Mon. If I was told it would be 54 days before I started treatments, I’ll admit I would’ve been shocked (and yes my wife IS shocked).

I continue to be assured by doctors that this cancer is very treatable and slow-growing.  I also have so many people praying for me and these doctors that I trust I am being guided in the right direction.

I also trust that people who need these services MORE THAN ME are getting them.  I picture Hawkeye Pierce looking at me on a stretcher saying “this guy can wait”, knowing there is a friend, a neighbor laying beside me who cannot wait.  I am praying for those friends and neighbors.

Observation #4

Combined with a reduction in caffeine (as noted in prior posts), the ‘fatigue’ of Sjogren’s at times was kicking my butt. A friend (thanks Bob!) shared with me the challenges of a ‘fatigue’ diagnosis and helped me develop a better attitude towards this: basically fatigue is my mortal enemy!

The first time I implemented my new strategy (ignoring the fatigue) I found myself on a basketball court having a night like the Bishop in Caddyshack, everything was falling (though glad my night did not end like the Bishop’s). I knew God had placed me on the right path.

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!

G

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