Radiation Mask & Surgeon Visit

We went to see the radiation oncologist again yesterday because we had to have a "mask" made for Greg and have him get his tattoos for radiation.   The reason for the mask is because of where the tumor is located, he needs to keep his head perfectly still for the radiation.  The only way to assure that is to have a mask made.  

We had no idea how this was done, so this was a learning experience for us!  You'd think, with this being the third time he's had cancer, that we'd be old hands at all this, but there is a LOT to learn with this one!   This first picture is of the "mask" in the warming tray.  Greg was warned that it would be kind of warm when they first put it on him, but he said it wasn't too bad.  

Here, they are fitting the correct "trays" (for lack of a better word) under Greg's neck and head, so that he's comfortable during the radiation treatment. 











Lifting the "mask" out of the tray to place on Greg's face.  

The two techs are helping to form the mask to Greg, and his Radiation Oncologist is helping. 










The mask is situated, and now Greg has to go through the CT scanner so they get a perfectly accurate reading of where the radiation beam needs to be aimed.  







In these next two pictures, you can see where the radiation will be aimed.  

In this picture, I zoomed in on the "bolts" that are attached to the mask and lock onto the table that Greg is laying on and will keep his head from moving during his radiation treatments.  

And yes, it is VERY creepy!  










Once we left the radiation oncologist, we had to head over to visit the surgeon.  As you've previously read, we pretty much ruled out esophageal surgery, as it's just too difficult.  Well, the surgeon told us just how difficult it is.  Think of a scale of 1-10 with10 being the most difficult.   A gallbladder would be a two.  Open heart surgery would be a six.  Surgery on the pancreas would be a 7.  Surgery on the esophagus would be a ten!  You'd pretty much hae to be in perfect physical condition to withstand this type of surgery, and we all know that that is not Greg's case.  So, this only cemented the fact that we simply can NOT consider any sort of surgery.  None of our doctors have said otherwise, and are most certainly not pushing us to attempt that option.    

The other reason we needed to see the surgeon -- who by the way is GORGEOUS!  Ha!  Believe it or not, but Greg thought so too, and even called him McDreamy!  LOL!   --  but I digress.  We went to see Dr. McDreamy because he is the one that is going to be placing the feeding tube for Greg.   As previously stated, he needs to have this done prior to actually "needing" it, because by the time he "needs" it, he will be too weak to have the procedure. 

So, tomorrow (April 20, 2017), we are scheduled for Greg to get the feeding tube.  I almost wish he was getting the Hickman Catheter first, because then he wouldn't have to be stabbed to get the IV in!  But, it is what it is.    

After the procedure tomorrow, we have to meet with a dietitian so she can show me what and how to do "feed" Greg.  I ended up in another fight with the insurance  company over that.  The woman that I was speaking to was trying to tell me that it would not be covered.  She kept thinking that we were going for a nutritional consultation, which is only covered for diabetics, etc.  She refused to understand that this was to TEACH ME HOW TO FEED MY HUSBAND WHO HAS ESOPHAGEAL CANCER AND WILL BE UNDERGOING RADIATION AND CHEMOTHERAPY AND NEEDS THE FEEDING TUBE BECAUSE HE WILL BE UNABLE TO EAT AT SOME POINT IN TIME!  

She offered to have Greg's case reviewed by a nurse, but it would still be 24 to 48 hours before a decision was made.   We just learned of the surgery on 04.18.17 at 2 p.m., and the surgery is to take place on 04.20.17.  Forty-eight hours is still too long!  She then told me that there was nothing more she could do.  I absolutely LOST IT at that point.  I told her that I hoped she never had to deal with something like this, and that if she did, she never had to deal with someone like herself, who was absolutely NO HELP AT ALL!  

I then called our case manager and left it all in her hands.  I should have just done that in the first place, but who'd have thought it would be such a huge deal?!  For crying out loud!  If they had just READ what we actually needed, there wouldn't have been such a huge issue!  After advising Jeanne of the problem, she took over (and even had to go to her manager) and got it taken care of and we're covered.  Whew!   

So, that's the latest.  I'll be taking my camera to the hospital tomorrow for more pictures.  I wonder if I'll be able to convince McDreamy to have someone take pictures in the operating room!    Ha!   

If you're interested, and really want to see the gory details, here's a video all about inserting a feeding tube!  

Blessings to all! 

Julie 

PS, our lovely daughter, Erica, has set up a GoFundMe page to help us defray the costs of travel daily for radiation and other healthcare costs.  If you feel compelled to help us out, we certainly appreciate it!   We know that our God is truly an awesome God and He will make sure that everything is taken care of!
Greg's GoFundMe

Today's the Day!

Well, today's the day.  The day we find out what Greg's treatment options are and here I sit with my limpy limbs -- I had a training session with Ian yesterday, so my arms feel like rubber.  Greg told me to take my limpy limbs to bed!  LOL  So, it's 5 in the morning and I'm unable to sleep.  I was exhausted yesterday because I hardly got any sleep on Sunday because of massive thunderstorms.  My weather radio went off four times!  Here I thought I'd be able to sleep longer, seeing as I didn't have to get up with an alarm, but my body said nope, not happening.  

So many things are running through my head right now, and most of them are not good.  I've mentioned in the past that Easter time scares me because so many bad things have happened at this time of year.  This Thursday, Holy Thursday, marks 25 years since Greg was first diagnosed with cancer.  I'll never forget that day.   I'm not going to rehash it here.  Suffice it to say, I was a terrified young wife, only 25 years old, with a one year old son.   Fast forward to April 12, 2000 (Aaron's 9th birthday, by the way), and we find Greg having a bone marrow transplant.  Tomorrow marks 17 years since his transplant.  The day his brother saved his life.   Since that first diagnosis, we had two miracle babies (chemo usually makes you sterile!), built a house, moved up north, opened and closed our own business, started raising chickens (who'd have thunk it!), and best of all, found new life in Jesus!   

Now, almost 17 years to the day of his transplant, we are heading to the Oncologist office to find out how we are going to battle esophageal cancer.   Greg is back to his usual (cancer fighting) self.  Let's get this going!  Whatever needs to be done, he does, usually with a smile while I'm the one cringing.  It's a little different this time, because my girls are older.  They were too young 17 years ago to really understand how horrific that time in our lives was and how scared I really was.  Now, they are adults, and they are scared.   While they were used to health issues with Greg, that was just his heart.  I know that sounds callous, but when you have congestive heart failure, your family learns how to deal with frequent hospitalizations.  This is different.  I'm not sure how Aaron is feeling about this.  He was 9 when Greg had his transplant.  I know he remembers a lot of what happened.   I just don't know how he's feeling about all this.  To be honest, I'm scared, too.  Who wouldn't be?  We try to be tough and say, well, this is our third time dealing with cancer, we're used to it.  But you know what, we're NOT used to it.  No one EVER "gets used to it."   

So, here I am rambling at 5 a.m., just waiting for time to pass before our appointment at noon.  

Preliminary PET scan report!

Greg had his second endoscopy yesterday at Aspirus in Medford.  They had a problem getting an IV in again (they said he has "tough" skin), and his veins are shot from all the chemo he's had in the past.  He was to have his PET scan today, and would need another IV.  I woke up in the middle of the night thinking . . . why can't they leave the IV in, so he doesn't have to have it done again?  Well, lo and behold, they checked with the providers doing the PET scan (Aspirus Hospital in Wausau), and they said SURE, they could definitely try to use the one from Tuesday, but if it didn't work, they would have to poke him again.   

Fortunately for Greg, it worked and he did not have to be poked again!  YAY!  We certainly were not expecting any results today, but we did get preliminary results!  

They do not believe they saw an swollen lymph nodes or spreading of his cancer!  YAY!  That is the BEST news we could have possibly received!  PRAISE GOD!   

We still do not know what stage his cancer is, but will find that out, along with our plan of attack on Tuesday.   Please continue your prayers for Greg!  Our AWESOME God is listening!    Thank you, everyone!  

Cages were rattled at United HealthCare today!

If you read my previous post, you know that I'd been having problems with our insurance approving Greg's PET scan.  I had been trying to figure out a way to get the attention of someone higher up in the company and not coming up with anything.  Of course, I'd been praying and asking God for guidance.  

This morning, when I logged on at work, I saw on our company intranet site an article about National Doctor's Day.   I clicked on the article and decided that I had to leave a comment!   There is absolutely no doubt about it.  This was GOD directing me!   Here's what I posted:  

Within two hours of my post, I received an email from a woman stating that she had escalated my issue!!!!!  About ten minutes later, I had an IM (instant message) from the Director of the Cancer Team of OptumHealth (owned by United HealthGroup).   He stated that another woman was going to be reaching out to me.  Within 30 minutes, I had another call from someone at United HealthCare.  Jeanne is part of a team that helps its employees deal with issues such as ours.   

Jeanne was AWESOME to deal with!  She spent most of her afternoon contacting people within United HealthCare to find out what is going on and how to get this moving ahead.   When I spoke with her at 4:00, she advised that at 2:00, Greg's prior authorization request for the PET scan was placed in URGENT status.  That meant that they had to have a decision within THREE hours.   

I received a call from Greg's doctor exactly three hours later advising that the PET scan had been approved!  YAY!   

When I was speaking with Jeanne, she advised that she had received numerous emails from "higher ups" at United HealthCare and they are watching Greg's case!   The doctor that I had spoken to earlier in the day also advised that he contacted the head doctor at United HealthGROUP about our situation, as well!   United HealthGroup is #6 on the Fortune 500 and has an operating income of more than $11 BILLION dollars!   The HEAD DOCTOR of that company is now watching our case! No one can tell me that God's hand was not involved!      

Praise God that everything has worked out and we now have numerous people watching over us and making sure that Greg's treatment (whatever it may be), is taken care of properly by our insurance company!  THAT is the company I work for!  Thank you, United HealthCare!