Sinus Surgery

John's nurse tried to schedule the port and feeding tube removals during the sinus surgery.  John checked with her three times to see if it was possible.  She kept saying that they weren't able to work it out.  So Thursday of last week, we went to get out the feeding tube and port.  We got all checked in and went over everything with the resident doctor.  Then the doctor came in and said she saw the note in the system that John would rather do all of this while he was under anesthesia the next day.  She said she didn't know where the communication error came in, but she is working tomorrow and completely able and willing to do the removals during John's surgery.  So we left and John went back to work on Thursday.  Then Friday, we went back to the hospital for the sinus surgery and tube/port removals.  The surgery lasted just under three hours, and was supposed to be an outpatient procedure.  The surgery got a late start, so it didn't get over until about 9 pm.  The doctor came out and told me the surgery went well; he explained everything they did and said the nurses should come get me in about half an hour.  About 11 pm, I found out they had decided to keep John overnight.  So John got one last stay with the nurses waking him up every 15 minutes all through the night.  It was John's first time on the 5th floor at Huntsman, so now he has visited all six floors of the hospital.  Saturday afternoon John was discharged.

The surgery was to unblock the left frontal sinus.  The doctor said once the blockage was removed that the sinus should drain like a popped blister.  Instead, the drainage was about the consistency of a gummy bear so the doctors had to clean it out.  The ended up putting a tint up there to hold everything open.  They also cleared out his sinuses in his cheeks next to his nose.  They found that his nose was crooked, so they fixed that as well.  The doctor said that once John is recovered from the surgery, he should notice a major improvement in his ability to breathe. So far John just feels like he got punched in the face by Mike Tyson.

Because they were doing the sinus surgery and were already up his nose, they took a biopsy of the tumor site.  There were actually two sites to biopsy in his nose: first, the tumor site; second, the site that showed activity on his scans.  Both sites looked like normal tissue during the surgery so the doctor had to guess where the sites were.  That's really good news, because we have recently seen scopes of his nose and we could tell where the tumor had been.  So that's great that it wasn't an obvious spot any more!  Now John just has a couple follow-ups from this surgery and scans at the end of October. 

Survivor

Scan update part 2

John received a message from Dr. Wright today (8/10/2015) saying, "We reviewed your scans this morning at our tumor board. All agreed everything looks good on the scans, no concern for recurrent tumor."

Last week when we had met with Dr. Wright and Dr. Poppe, the tumor board had not met yet.  Now they have and they all agree with what was said last week.  We are excited that there is kind of a built-in second opinion to our care at Huntsman, and we are excited that they all agree that everything looked good on the scans.


Here's a picture of John hiking over the weekend. 

Scan Update

John had his follow-up scans last week and we met with the doctor yesterday to get the results.  The doctor still hopes that the cancer is gone. She said she was really happy about everything.  His June scans showed activity in his nasal cavity.  His July scans showed less activity in his nasal cavity.  The doctor said that the activity isn't in the same spot as the tumor.  So it could be tissue healing or something from his congestion, or a hundred other things.  She said it doesn't look like something to be concerned about.  So she encouraged John to get his port out and then set the schedule for scans to be every 3 months for the next 2 years and then after that it will be every 4-6 months for a while and then they will gradually be less often. She said she encourages getting the port out now, but he could leave it in for however long he wants. She said 6-9 months is kind of the typical time frame to see something if we are going to see a recurrence in the cancer, so some people leave it until they pass that marker.  She doesn't feel the need to do that, she recommends just being done with it, and if we have to put it back it, it's simple to do.  We have decided to just be done with it too. 

John is going to get both his port and feeding tube out.  We are hoping that the doctors/surgeons can work it all out and do everything during the sinus surgery in a couple weeks.

The radiation doctor has been optimistic about John's saliva glands fully recovering until yesterday.  Yesterday he said that there could still be improvement over the next several months, but that there is a possibility that this is the best they are going to get.  Right now, John has to drink a lot while he is eating to swallow his food.  It makes eating a real chore.  But he has been eating more and using the feeding tube a lot less.  Some foods are even tasting good to him now.  The doctor offered a prescription that may or may not make a difference for him, John decided for now it's not worth taking a pill three times a day for.

John has been feeling so much better and has been back to work for just over a month now.