Day 177 – Saturday (02/16/19)

Next blog update will TRY to be posted by Saturday, February 23rd, at midnight.


Hello everyone!  I wish I was able to come to you with fantastic news for this weekly update.  Unfortunately, the reality is I was thrown a curve-ball this week.  Lets break this into two parts.  Part one went as planned.  I had the consultation this week for the endoscopy to check the spot in my stomach.  The consultation went fine, no surprises, and I’m scheduled for the endoscopy on Monday (late afternoon).  I’m not worried about this.  I think it will all go smoothly, and we will get confirmation the “spot” is nothing.  Note, it is my understanding that they will biopsy the spot no matter what.  Whenever I have these results, I’ll be sure to include them in the weekly update.  Now for part two.  I also had the consultation with the radiologist this week to discuss starting my radiation.  Enter the curve-ball.  The radiation doctor explained that with radiation, we need to treat the entire area where the tumor originally was.  Even though the tumor has shrunk significantly, there is a possibility that cancer cells remain in the original tumor location.  This makes sense.  Problem…  based on the “values” of my latest PET scan, I need to get a radiation level of 50 (on something called the grey scale), for 25 days.  Based on the area they have to radiate and the dose/time it will take, they have calculated that my heart will be exposed to too much radiation.  The amount of radiation it would get would likely cause my heart to fail in 10 years.  Seeking a heart transplant at the age of 43 does not sound that appealing to me.  So…  I was given a couple options.  (1) There is a newer technology out there called “Proton” radiation (as opposed to “photon” radiation… which is the type we just discussed).  Proton radiation has the ability to blast ONLY the tumor area, and miss the heart completely.  (2) I could take two more rounds of chemo, in hopes that it lowers the “uptake” value of the tumor (the number they got from the PET scan) to a point where I may only need a dosage of 20 on the grey scale for 10 days.  Supposedly, statistics say that the amount of radiation my heart is exposed to (using photon therapy) in this case… would be low enough that it would not “kill” my heart.  Note, however, that there is no guarantee that 2 more chemo’s would reduce the uptake value to this lower level.

Reading these two options, you may say this is a no brainer.  Go with the protons!  No more chemo required, AND no radiation to the heart (not even a lesser dose).  To be clear, this is the direction I’m heading.  I have a consultation with the Proton doctor next week.  There is only one caveat to the Protons.  Protons are MUCH more expensive than photons.  You might guess…. my insurance does not cover protons.  Now… the proton doctor is going to attempt to make a case that the protons are medically necessary.  However, they told me they had a case very similar to mine (with the same insurance company I have), and the insurance company still refused.  The only difference in that case and mine is that the gentleman in the other case was “significantly older” than me.  This may sound terrible… but basically they looked at it that when your 70… doing damage to your heart that may cause failure in 10 years did not deem “medical necessity”.  The proton doctor is hoping that my young age will help my case for necessity.  I’m not going to get on my soap box about insurance companies and our health care system.  That can wait for another day and time.  In the end… if the insurance company will agree to cover this due to medical necessity, then I will owe $0 (because I hit my out-of-pocket max with my 6th chemo in January).  If they won’t cover it, and I want to continue on the Proton route… I will owe $40,000 out of my own pocket (so now instead of a Pepsi Can in my chest, I guess I’ll have a new car?  Haha).  If this happens, I will be able to setup a payment plan (I don’t know the terms… but I know it is 0% interest… and hypothetically if I pay $100 / month… I’ll pay it off in 33 years).

With all this said… my current prayer request for my fellow blog readers is that (1) My endoscopy goes smoothly on Monday (and that nothing is found), and (2) that the insurance company will cover the Proton Radiation.

Dear heavenly Father, I’m not going to lie.  This week took me by surprise.  However, what is so awesome about You… is that it did not take You by surprise.  You knew this was coming all along.  Its simply another opportunity for me to grow my faith, and for You to get the glory.  I pray that You would be with the doctor during my endoscopy, and that everything will go smoothly.  I pray that You would soften the heart of the people making the decision on the insurance and that they would see the protons as medically necessary in my situation.  God, help me to be okay with the fact that I may wind up having to pay out of pocket.  I know if this becomes reality, that You will continue to provide for me tomorrow, just as You have done every day in the past.  There has never been a day where I or my family have had to go without a need met.   You are always there for us.  Changing directions, I pray for the Runk family in Haiti.  We had a group from our church heading to Haiti on a mission trip to help the Runk’s.  However, due to a major uptick in violence and unrest, the trip has been postponed, and the Runk family has told us it is the worst in Haiti that they have ever seen since their time down there.  Please provide safety for them, and wisdom for our church group as they monitor the situation and look for a possible way to reschedule the trip.  Thank You Lord for all that You do, amen.