Month: October 2017

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