Day 184 – Saturday (02/23/19)

Next blog update will TRY to be posted by Saturday, March 9th, at midnight.


Hello everyone!  This past week was another very busy week.  We will start with the endoscopy.  The procedure went smoothly.  The doctor took several pictures to show me, and said that he really saw nothing wrong.  The only thing he saw near “the spot” that was showing up on the PET scan was evidence of where stomach acid had “backed up” to the upper part of my stomach, lower part of my esophagus.  Basically, just the irritation from the acid could have caused the “false positive” on the scan.  He went ahead and took several biopsy’s, and all of those have come back normal.  It was a huge relief to hear this.  Now we know my stomach is good, and we just need to focus on finishing off Blobby.  Then life can return to some sort of normal.

So, about Blobby.  I met with the proton doctor for a consultation this week.  He is very confident that 5 weeks (25 treatments, M-F) will finish off Blobby.  I asked him his opinion about doing any more chemo.  He said that he did not see it necessary at all.  With that said, I have made my final decision to proceed with the Proton radiation, with or without the insurance company helping to pay for it.  I was able to fill out a financial assistance application.  It has been reviewed, and they cut the price for me from $40,000 to $20,000.  This is a huge blessing, in the event insurance won’t help.  If they do help, I will owe $0 (already hit my out-of-pocket max).  We probably will not have the final answer from the insurance for up to 6 weeks (they will decline, doctor will appeal, if they decline again, doctor can appeal one more time… each appeal being 3 weeks typically).  So the irony here is that I will already be done with the treatments before we even know what insurance will do!  With that said, I have to make a 25% down payment at the first treatment, and start monthly payments thereafter (max term of 36 months).  In the event insurance comes through, I get refunded what I have paid.  If they don’t come through, I just continue the payments.

I had a second appointment with the proton doctor (after the consultation), and they did all the prep work needed to start programming the machine.  They basically did a “simulation” where they laid me down on the same type of bed that I will lay on for treatment.  They then took a mold of my upper body, which I will lay in each time for treatment.  This mold will hold me in the exact same spot every time.  They also had to tattoo me with three small dots that they will use to line up my body (in the mold) to the machine.  Next, they had to wrap a compression sleeve around my stomach to control my breathing while I’m on the bed.  Then they scanned me, and mapped my breathing pattern.  This is important, because as the proton beam is “shooting”, it has to adjust the depth of penetration based on your chest movement from breathing.  Its pretty awesome we have technology that can do that.  Speaking of technology, I’m going to nerd out on you all for a minute.  So the way this proton deal works… They take a hydrogen atom (which has 1 electron and 1 proton) and they strip the electron off of it, causing the atom to have a positive charge.  They then put the atom in a centrifuge and “spin it up” to a pre-determined velocity, and shoot it into you.  The velocity it shoots, and the matter it travels through as it goes into your body, determines the depth that it will penetrate.  This is how they keep it only hitting the tumor, and not “traveling through” to hit other organs.  The proton beam “sweeps” the area being treated in 2mm increments… much like a 3D printer works.  Again, I’m blown away that God has given us the ability to figure all of this out!  Long story short… after the simulation, the doctor now has all the data he needs to be able to write the program for the proton beam.  This process takes about 2 weeks.  The estimated start time for the 25 treatments is March 11th, with my last treatment being April 12th.  After this, they will wait 90 days before doing another PET scan, to confirm that I am officially in remission.  They have to wait the 90 days to allow the “radioactivity” from the treatment to calm down, or it will show up on the PET scan as a false positive.

There are no new events (doctor’s appointments, etc) planned for the next two weeks.  Really, I shouldn’t have to do anything else from the medical side until March 11th.  With that said, I will not post an update next Saturday (March 2nd).  Instead, I will wait and post an update on Saturday March 9th, where I can confirm the plan outlined above is still intact.

Dear heavenly Father, thank You for allowing the results of the endoscopy to come out perfect.  This is one less thing I have to think about!  Also, thank You for allowing me to qualify for a 50% discount on the Proton treatments.  In the event that insurance does not help, this discounted amount is huge blessing.  With that said, I continue to pray (if it’s Your Will) that You would allow the insurance company to see the medical necessity in this case.  Also, over the next two weeks, while the doctors are writing the program for my treatments, I pray that You would give them the knowledge and skills required.  They were all very nice and patient people when we met them this week, and I thank You for giving me peace about going this route of treatment.  I pray that as we go through the treatments, and wait the 90 additional days for confirmation, that You would allow Blobby to be completely eliminated, and that I would be deemed officially in remission.  Thank You for all that You do for us, each and every day, amen.