It all started with...

We know there are some out there that are following the latest info about Robin and his new adventure with cancer.

This report is going to be mainly from Susanne with maybe a few notes thrown in from Robin.

I know most of you get his weekly Hagberg Newsletter so you see our lives from his perspective. Now it will be my turn to tell you of our experiences. I think it will be good for me to get it down in writing and perhaps it will help me, if no one else, to organize my thoughts and calm my mind. We will see.

It all began around the first part of September with Robin having a tender left jaw and thinking it was a swollen jaw. He put up with it as there was an ear ache but no sore throat or cough involved. The ache was on and off and being "Robin" he didn't complain...so I didn't worry about it.

On Friday, the 24th of September, we went to Bountiful to spend the afternoon with our daughter, Shannan. Robin went to Bountiful pond to fish while Shannan and I went to the Ward garden to pick veggies for us to can. Robin called me there and said he was really feeling sick and in pain with his jaw. I said, "that's it! we're going to Insta-Care". He was waiting on the front steps when Shannan and I got back to the house and we left immediately. The doctor was very concerned as he palpated his jaw and looked into his mouth. He had me look to see that the roof of his mouth, on the left side, was bulging down. He prescribed an antibiotic and instructed Robin to see his own doctor in Provo on Monday.

Seeing that he had a dentist appointment on Monday morning to get a crown set he went there first then was able to see our family doctor later. The dentist said that the sore jaw could be TMJ or TMD and that he could relieve the pain with warm or cold packs and to continue with the antibiotics. He said to call him anytime if he needed some pain medication.

When he went to the doctor ( I should have gone with him!) he took his blood pressure, listened and heard his story. The doctor agreed that must be the problem...neglecting to look into his mouth or ear or feel his jaw. (Now we can look back at that time and think of many things we should have done...but didn't.)

Six weeks later...yes I said 6... Robin called from the MTC and said he was in such pain and would I please call the dentist for some pain pills. I immediately called our family doctor and were refered to an Ear-Nose-Throat Specialist. I called him as soon as I hung up and got the earliest appointment...the next day, Nov 11th...and it was in Payson.

We saw the PA and when he saw into his mouth and felt his jaw he prescribed pain pills and made an appointment for a CT scan and biopsy, 4 days later on the 15th of Nov., at the Timp. Hospital in Orem.

As we looked over the shoulder of the doctor who was reading the scan we saw the large lump in his jaw and how it was pushing on his ear drum and jaw bone. The ear was clear and no infection but surely it all must hurt with the mass pushing on everything. The doctor didn't want to do the biopsy before the ENT doctor saw the scan and would make the decision for the next step.

Wednesday, two days later, we returned to Payson where the biopsy was done and were told they would call us with the lab report. The report came soon ...cancer... and the doctor wanted a PT scan (full body scan) done to see where it had originated or where it had spread.

One week later Robin was at the Utah Valley Outpatient Clinic and went through 2 hours of workup, instructions and PT scan. He was sent home after a miscommunication with us sitting in the waiting room afterwards for 2 more hours. We would be called with the results.

In the meantime we had a wonderful Thanksgiving even though Robin found it hard to open his mouth or chew very well. Monday of the next week found me in Costco food shopping with April and Brad's sister, Chris. The phone call from the ENT doctor came as I was perusing the shelves for a new heater for our guest room downstairs. I stopped and took the info with April providing paper and pen for notes. I was calm as the doctor explained that the cancer had spread into the liver and some lymph nodes and that Robin was being turned over to an Oncologist at our clinic in Provo. He also prescribed another round of antibiotics and some more pain medication. Robin and I had a sober Family Home Evening with me telling him of the phone call and passing on what little info there was. (I had insisted that my phone number was to be used on his records as his hearing is getting worse with the pressure and he often didn't really hear what was said.)

The next day I was in the clinic to pick up the prescriptions and to see my "hand" doctor. As I left his office I was impressed to turn right and go down the hall to the Oncology office. I stepped up to the desk and asked if the appointment had been made yet for Robin. They checked and said no but would do it now as I waited. They got the ok and set him up for 8 days away! I tried to get it sooner... but no luck. I asked for him to be put on a cancellation list and he was. The next day the front girl called with a possible cancellation the next day. The patient was prone to not show up and not confirm...there was a possibility. I said we'd take it! The next day we were sitting in the hallway with our cell phone waiting for the call. They thought we would be home waiting but we wanted to be there just in case. I asked at the desk at straight up on the hour and they said "we'd better give him 10 min. just in case..." ok... we were there ...waiting. 15 minutes passed and the girl stepped into the hallway and said, "we called him and he is in the parking lot... we are SO sorry!" We said , "please keep us on the cancellation list"... and went home to wait some more.

Later that afternoon they called back, apologizing for not being able to give us the appointment, but that she was so sorry she had scrambled around and got us an appointment that very next day...for certain...with the other doctor in the practice...did we want it... Yes, yes, yes!

So, today, Dec 10, 2010 we appeared for our first appointment at the Oncology unit. We were going to learn more of what it was and what treatments lie ahead.