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CT Scan results are back and looking good! Doc said the radiation treatments appeared to get the job done, removing all masses and cysts found back in August. I am now moving into maintenance mode with 6-month checkups for a few years.

The Sjogren’s journey continues, though I’ve resigned myself to treating the symptoms as best I can (and continuing to pray for miraculous recovery!). I am going to the Johns Hopkins Sjogren’s Institute on 2/20. And no, Venus Williams never got back to me with me her successful strategies to minimize Sjogrens (I tweeted her!)

Thanks to all of you who offered up prayers for me, to my doctors who were great, and to my Chief Caregiving Officer Sheryl, my kids and my family for their patience and support!

Observation #1

Obviously this is fantastic news! While my news is positive, several people close to me are not getting fantastic news. Anyone that has tried to logically piece together why some get good news and other don’t, quickly realize that there is no easy logical answer.

Regardless you take the next step – with whatever you have faith in. Like Indiana Jones stepping off the cliff, we must continue to take those steps even when the ground in front of us is not clear.

As a follower of Christ, my next step is to continue to pray for those around me who are getting not-so-good news. I hope that my prayers contribute to good news for them on the health front, like many of your prayers did for me.

While I would love to measure the worldly effectiveness of my prayers, I know my prayers keep me in the right relationship with my God, focused on how I can be His ambassador – sharing His Good News – to others in this world.

Merry Christmas!

Many have asked my status:  in holding pattern waiting for a late Jan CT-Scan to see results of radiation therapy. Overall feeling pretty good. Not sure if Sjogrens or radiation, but the taste buds remain affected (cannot eat spicy or hot foods, don’t care for dry foods like bread).

The prayers and encouragement that many of you shared with me are further evidence of “on Earth as it is in Heaven”: y’all were great Ambassadors (2 Cor 5:20) of that Kingdom in my life. I will do my best to pay it forward!

Next Steps

• CT Scan late January 2018

Observations: Dry Mouth Sucks!

The saliva produced in our mouths is one of the most underrated human features.  Both radiation and Sjogrens are known to kill or disable the parotid glands, little-known glands in our cheeks that produce saliva.

Dry mouth sucks (yes, a relative suck compared to what others go through). It seems like every 10 minutes I need a drink, and too often find myself far from a water bottle. While officiating basketball, I have a little ‘mouth moisturizer’ spray that I use every timeout or break I get.

While eating I miss the food swallowing prep that saliva performs (who knew!). I rarely eat a meal without water or something nearby to help with that prep.

Observations: Dietary Changes

The lack of saliva has changed my diet, mostly for the better.  I drink more water than ever: I used to think “I wished I liked water more”, now I DO like water! When I eat a sandwich I often bail on half of the bread: just too much work to eat it!

Originally I thought I’d be heading full speed down the anti-inflammatory diet route due to the Sjogrens. The initial visit with a rheumatologist did not suggest that would help much so that plan is currently on hold.  It is not a trivial plan to execute, especially for someone not very disciplined or skilled in a kitchen. And I have not convinced my skilled bride yet!

Observations: My Bethlehem

I recently heard someone describe our relationship with Christ as ‘our Bethlehem’: Just like Jesus came into this world humbly in a manger, He wants to enter each of our worlds too. I believe He uses many different avenues and ways and people to achieve that.

This Christmas I found peace knowing that the manger I’ve setup for the Baby Jesus in my life is sufficient.  It is not the Four Seasons, but that is not what He requires. I’m thankful to all the Kingdom Sherpas that helped get me to this point.

Treatments are done, most of my side-effects are going away.  Thanks to all who provided prayers, encouragement, cards, meals, etc.  Humbled as always by the great cloud of witnesses that surround me, and the Sherpas that helped me get through this.

I am resuming normal life, including work travel to Tokyo on Saturday. A little nervous about being in a tin can for 14 hours but confident I will get through that: better than 20 minutes in my cage!

I meet with doc’s in 2 weeks, but they’ve said 3 months until they are ready to make any assessments of treatment effectiveness.

Observation #1: ISAAC!

Cub #2 turns 20 today!  Happy Birthday Isaac!!  Amazing to watch him grow into a young man, and I know that he will cause many Kingdom tremors as he travels his life journeys.  His good looks (dad bias here) are only exceeded by his HUGE heart!

Observation #2: Normal?

I shared with a friend that I was 90% normal, his response:  “I’ve never been 90% normal!”.  Amen..

Observation #3: Life Sherpas

Another friend shared the ‘sherpa’ analogy, I love it!  I’ve had many cancer sherpas help me up and down this mountain.  Thank you!

I have many Kingdom sherpas that show me daily what it means to live in the valleys and mountains as a Follower of Christ.  Thank you!

Observation #4: New Diet

For several weeks the side-effect of EVERYTHING-TASTING-HORRIBLE meant that I did not have to deal with my diet issues. Now that my taste buds have returned partially, I find myself craving different things. I’ve always enjoyed Japanese food but never ‘craved’ it.  Now I’m looking forward to having it next week.

I’m not sure how long that will last but I know that moving to ‘anti-inflammatory’ will be a bigger part of my future diet.  And yes, I already have a bunch of anti-inflammatory sherpas that will guide me on that journey.

His Peace!

G

My football career was short, but one pigskin lesson I learned was:  no matter how tired you are going into the 4th Quarter, you finish strong! Between the 3rd and 4th quarters we held up the number 4 and yelled ‘FOURRRR’ to remind us.  This is what it looks like on the field:

As I head into my final 2 treatments I am emotionally and physically exhausted, but I am raising my hand and yelling ‘FOUR’!

Next Steps

• Finish the last 2 daily radiation treatments, through 10/24
• Wait for side effects to leave 11/1?

Observation #1: Exhaustion!

My cage – the mask I wear daily for 20 to 40 minutes – continues to be a challenge, needing adjustments which extend the time I am in there. I continue to use pray and other techniques to fight this, but I cannot wait until this is over.  This is not me, but what I have to do.

The side effects of the radiation – sore throat and mouth – make every bite, every drink painful. Imagine having a hot buffalo wing in your mouth all the time.  My wife laughs at me because she will give me the blandest item she can find and it still causes pain.

As a result, I am essentially on a hunger strike, having to force down a few hundred calories a day, dreading every moment of it. Some recommended a ‘swizzle’ that numbs your mouth and throat so you can eat.  I tried it but judge that worse.  The mouth pain also makes sleeping a challenge. So I am basically walking around like a zombie.

Treatments end Tue but the side effects linger for another week or longer, so I am not sure when the eating/sleeping thing will subside.  FOUR!

Observation #2: Hopkins 2nd Opinion

We visited Hopkins for a 2nd opinion with Dr Wagner-Johnston.  Glad we did it but as most of you will probably agree, get the 2nd opinion BEFORE you start treatments.  She had one suggestion that would’ve affected our decision making had we not started already.  Overall I believe we are on the right path and I have 100% confidence in our medical team.

Observation #3: Cancer Sucks

Most of the experiences I’ve had locally, there were usually only 2 or 3 people in the waiting room with me, even at Hershey Med.  At Hopkins I was in a room with over 100 people waiting, many with family/friends but still a huge number.

It is so easy to go through the day worrying about the hurdles we have in front of us.  It was humbling to see all of those people fighting the cancer fight. I know some of you walked this last weekend to fight cancer.  If you didn’t, take a second to pray for a cure, even to join the fight by clicking here!

Observation #4: Rheumatologist & Sjogrens

We visited Dr. George Kunkel regarding my Sjogrens. I have to admit I was disappointed by the results.  I was expecting an strong action plan but Dr. Kunkel’s advice was that there was only a little that can be done to treat symptoms. How can I win the US Open with that plan?!

I expect that we will continue to pursue direction on this front, but until we clear the radiation phase, my brain cannot handle much more.

Thanks to all for prayers!

G

Four days of radiation treatment completed, eight to go. I recall years ago going with a friend to one of his radiation treatments: loud music playing, 10 minutes, in and out, let’s have lunch!  It seemed so easy. While nothing compares to chemo, my radiation experience has been different.

The greatest challenge is keeping the claustrophobic panic at bay. My shoulder and head mask (I call it a cage) gets clamped down extremely tight to the flat bed. I have to keep my mouth slightly open, and my nose has just enough room to breath. I can feel the warmth of my breath on the plastic. The neck part of the cage presses so hard against me, I can feel it when I swallow. I can feel my heartbeat throughout the mask when I exhale.

The first day was the worst as they had to make many tiny adjustments: I was in the mask for about 40 minutes. “We are perfectionists”, and I am glad they are. Doesn’t make that time any easier. The second and third days went better, but day four took longer for more adjustments.

I hold a ring that keeps my hands and shoulders in place, and doubles as my panic sign (“Hold this up and we’ll be right in”). Oh so many times I wanted to wave that thing!

One of you suggested I take in with me a ‘prayer list’ (memorized since I can’t see anything). It has been my lifesaver. I have used it to prevent the panic. And when panic does break through, I hunker down and remember more names on my list.

I often preach that we should navel-gaze less, instead focus on others. Never has the value of that lesson been so real to me. Chances are you have been with me in my cage and praying for you has helped me through those times. The irony is that many of you are doing it right back. THANK YOU!

Next Steps

• Finish the last 8 daily radiation treatments, through 10/24
• Johns Hopkins 2nd Opinion, 10/13 11:00
• Rheumatologist Appointment, 10/18

Observation #1

Each day about 90 minutes after the treatment I seemed to get hit with extreme fatigue.  I continue to wrestle with how to respond to that, trying different techniques. The best response was today when I refereed at 4pm.  Forced me to get my butt out of my chair (sometimes my bed) and keep moving.  Too bad I can’t do that every day!

Observation #2

At my game today I had a woman yelling how bad I was as an official.  We officials have delusions of how good we are, but down deep we know we are not perfect. We are simply hustling out there for our $25 or $30 doing something we love, most of us trying our best to be fair.

I wanted to flash my “I Have Cancer” card at her to give her some perspective. I trust that my bad job today will not jeopardize her 7th-grade daughter’s future WNBA career.

Observation #3

The first person on my prayer list is of course my wife.  She has been a trooper and my best advocate through this whole experience. A friend reminded me that spouses are often hit as hard if not harder than the patient. Even before this cancer thing, my wife earned prayers for putting up with me.  Now more than ever she needs some prayers. Please include her on your list if possible.  (Yes, I will get grief for this observation!)

Observation #4

My parents have already lost one child so I know my being sick has been troubling to them.  My mom has been a trooper though, and her trip to Spain with my dad and sister sounded like a great experience! She returned to learn that a good friend is very sick, and for those of you that know my mom, please lift her up in prayer as well.

Observation #5

My work has been great!  Patient through this entire experience and very supportive.  Thanks to all at ESG!

Observation #6

My wife thinks I look sad but that’s actually a smile.  I was just blessed (or cursed) with a naturally mean face. If you thought in the past “He looks mean” or like an eventually good friend in college “I thought at first you wanted to fight me”, then you know what I am talking about.

As always thanks for your prayers!

My scripture through this period has been 2nd Corinthians 12:9:  “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

That is where I’m living…

G

Fingers not really interested in typing right now, even my brain seems to be moving slower as I move into this next stage. I don’t usually think of myself as being short of words, but this appears to be one of those times.

Last week they fitted me for the radiation therapy. I also don’t think of myself as claustrophobic, but that process definitely took me to the limits of that. I had my mouth closed as they fitted me.  I wasn’t sure if I’d be able to open it, but I had my nose, so no worries… then they started pressing in on my nose! Yikes, we have a problem Houston! As they put me in the machine panic ensued. My team was great, working me through it and getting it finished.

Many of you have taken the time to write me notes, sharing your experiences and your prayers.  They mean a lot to me!  Thanks!

Next steps:

1. First of 12 daily radiation treatments on Monday 10/9 4pm ending 10/24. Praying that my mask and I will get along!  Oh yes, praying for my medical team also!
2. Referee season begins! 10/12
3. Johns Hopkins 2nd Opinion, 10/13 11:00
4. Rheumatologist Appointment, 10/18

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.