This has been the hardest entry to start. I'm not sure I will continue this blog. So sorry.
We went to our appointment with our Oncologist yesterday and he laid it all out on the table...there will be no cure. I think we both sort of knew what was coming but needed to hear it spelled out. Squamous Cell Carcinoma in the neck and spread to the liver and some lymph nodes... We are still in shock and mulling the information over.
We were given lots to read and several options on where we want to go from here. Chemo and radition will prolong life but may reduce the quality. Thank goodness there are medicines for pain and people standing ready to answer any questions we may have. To our question "Did we wait too long to go to the doctor?" the answer was "no...by the time it was noticible it had already progresses too far." I'm not sure I want to share everything and that I want to answer any questions as we really don't know all the answers. I think for the next few weeks we are going to gather as a family and discuss... what we are going to do.
Saturday, December 18, 2010
Monday, December 13, 2010
Another needle...
We have just returned from our ENT doctor visit in Payson. As suggested the doctor wanted to talk about doing another needle biopsy in the roof of Robin's mouth. Seeing as the liver biopsy was not successful they saw this as being the next step. Robin bravely consented to let him do it and it was done without much fuss. The needle was for a core sample and the doctor got "two good ones." Now we just WAIT to hear the results and the next step. At this moment Robin is almost asleep in his Lazy boy and doesn't seem to be in any more pain than usual. We wait...
Friday, December 10, 2010
Put off again...
The last two days have been rather quiet and calm. Robin takes his Hydrocodone APAP (Loritab)pain pills regularly and rests and is quiet all day.
Here it is Friday again and the appointment with Dr. Wallentine was called off. Last week before Robin had even had the liver biopsy Dr. W. had set us up with an appointment to see the results and discuss our plan for treatment.
Dr. W. himself called at 9 am and said that he had the results and they were inconclusive. (?) He said on the face of it they looked good... no cancerous cells found... but the "kicker" was...the biopsy wasn't done to his satisfaction and there really wasn't a clear "sample" taken. He said there was nothing to view in the lab as the needle they used wasn't for a core sample and hadn't gone into the right place...What? Robin says he remembers someone saying..."this needle isn't long enough!"
Anyway when the doctor hinted at trying for another sample...he caught himself before I could scream...Noooooooo! He agreed that Robin's liver biopsy could be titled "torture" and thought Robin would not consent to another. He agreed and thought maybe they would do a core sample biopsy on his mouth/jaw tumor. It got almost the same reaction from me. But he did suggest it be done with Robin under anesthesia. That could be his choice.
When I hung up the phone and gave Robin the news the look on his face was one of horror! Even the mouth biopsy got the same reaction.
I talked, later, to Dr. W.'s nurse and she said the ENT doctor would call us with info on what they planned to do. When his nurse called it was cut and dried...it is to be done by the doctor, in his office, with a local only. I tried to tell her what Dr. W. had suggested but I don't think she listened to me... but then said..."well I guess we could see what the ENT doctor says and if Robin wants to be put under... we can WAIT till there is an opening at the hospital or the doctors schedule". I feel like we are being held for ransom!
The last word was that Robin has an ENT appointment Monday morning...(originally scheduled to check his ear and if the antibiotic is helping)... and then we can talk about the "mouth" biopsy... and perhaps do it there and then.
We spend our days wating and wondering and hoping all this passing of time won't come back to haunt us. The weekend is going to drag by and I think Robin won't feel able to go to church. He also misses the MTC and his missionaries and the "clothing ladies".
Here it is Friday again and the appointment with Dr. Wallentine was called off. Last week before Robin had even had the liver biopsy Dr. W. had set us up with an appointment to see the results and discuss our plan for treatment.
Dr. W. himself called at 9 am and said that he had the results and they were inconclusive. (?) He said on the face of it they looked good... no cancerous cells found... but the "kicker" was...the biopsy wasn't done to his satisfaction and there really wasn't a clear "sample" taken. He said there was nothing to view in the lab as the needle they used wasn't for a core sample and hadn't gone into the right place...What? Robin says he remembers someone saying..."this needle isn't long enough!"
Anyway when the doctor hinted at trying for another sample...he caught himself before I could scream...Noooooooo! He agreed that Robin's liver biopsy could be titled "torture" and thought Robin would not consent to another. He agreed and thought maybe they would do a core sample biopsy on his mouth/jaw tumor. It got almost the same reaction from me. But he did suggest it be done with Robin under anesthesia. That could be his choice.
When I hung up the phone and gave Robin the news the look on his face was one of horror! Even the mouth biopsy got the same reaction.
I talked, later, to Dr. W.'s nurse and she said the ENT doctor would call us with info on what they planned to do. When his nurse called it was cut and dried...it is to be done by the doctor, in his office, with a local only. I tried to tell her what Dr. W. had suggested but I don't think she listened to me... but then said..."well I guess we could see what the ENT doctor says and if Robin wants to be put under... we can WAIT till there is an opening at the hospital or the doctors schedule". I feel like we are being held for ransom!
The last word was that Robin has an ENT appointment Monday morning...(originally scheduled to check his ear and if the antibiotic is helping)... and then we can talk about the "mouth" biopsy... and perhaps do it there and then.
We spend our days wating and wondering and hoping all this passing of time won't come back to haunt us. The weekend is going to drag by and I think Robin won't feel able to go to church. He also misses the MTC and his missionaries and the "clothing ladies".
Tuesday, December 7, 2010
What a day!...
Another day...and what a day! We arrived at the hospital for the liver biopsy at 10:00 and spent the next 2 hours filling out papers, doing a blood work up and waiting... for an hour to get the OK to start from the lab. Finally the lab said go! (his blood was "thick" enough to allow the biopsy.)
I sat in the small room adjacent to the CT scan room where they took Robin to pass him through the scan and set the needle in the right spot to get the right sample. The technicians were in and out of the door many times and after the doctor arrived...in and out of the door a few more times and then at 12:30 the doctor announced...OK we're ready to get the biopsy. What! I couldn't imagine what had taken so long. The "spot" was on the inner side of the liver and they had had to push the needle all the way through the liver to get the "piece" they wanted. By the time they emerged saying..."It's done!" We had been there 3 hours.
Robin was in such pain he was not able to lie still or be prepared to go home. I couldn't think how I was going to take him home and care for him yet. He was moved to a recovery area and his nurse continued to watch over him. I was able to give him some crackers and water with 2 of his Vicoden pills but that didn't reach the pain. Finally the nurse gave him a pain shot of Demerol and phenogren and he was able to settle down. An hour later, at 3:30, he was wheeled out to our car and we headed the few blocks home.
Heather was there waiting for us and April arrived, from school, shortly after. They saw us settled and left us to rest. As the pain shot wore off Robin was restless and tense again. April suggested a blessing and he was desiring one. She called Matthew at work and he called Richard at his work and they quickly showed up. How blessed we are to have them come and comfort their Father with loving words and a priesthood blessing. As Robin relaxed back into a restful sleep we sat around him and quietly visited and gave each other comfort.
It has now been over 4 hours since they all left...(April came back to deliver me some dinner...) and we both have been sleeping in our Lazy boys with the TV on low....our best spots for a nap.
I hope the rest of the night goes peacefully.
I sat in the small room adjacent to the CT scan room where they took Robin to pass him through the scan and set the needle in the right spot to get the right sample. The technicians were in and out of the door many times and after the doctor arrived...in and out of the door a few more times and then at 12:30 the doctor announced...OK we're ready to get the biopsy. What! I couldn't imagine what had taken so long. The "spot" was on the inner side of the liver and they had had to push the needle all the way through the liver to get the "piece" they wanted. By the time they emerged saying..."It's done!" We had been there 3 hours.
Robin was in such pain he was not able to lie still or be prepared to go home. I couldn't think how I was going to take him home and care for him yet. He was moved to a recovery area and his nurse continued to watch over him. I was able to give him some crackers and water with 2 of his Vicoden pills but that didn't reach the pain. Finally the nurse gave him a pain shot of Demerol and phenogren and he was able to settle down. An hour later, at 3:30, he was wheeled out to our car and we headed the few blocks home.
Heather was there waiting for us and April arrived, from school, shortly after. They saw us settled and left us to rest. As the pain shot wore off Robin was restless and tense again. April suggested a blessing and he was desiring one. She called Matthew at work and he called Richard at his work and they quickly showed up. How blessed we are to have them come and comfort their Father with loving words and a priesthood blessing. As Robin relaxed back into a restful sleep we sat around him and quietly visited and gave each other comfort.
It has now been over 4 hours since they all left...(April came back to deliver me some dinner...) and we both have been sleeping in our Lazy boys with the TV on low....our best spots for a nap.
I hope the rest of the night goes peacefully.
Monday, December 6, 2010
Our next steps...
I ended short of telling you what happened Friday...and the date was wrong...Dec. 3, 2010.
We met with Dr. Wallentine, the oncologist, and he asked lots of questions, wanting to get Robin's history and background. I think he wanted to know if he had any exposure to cancer causing environments but couldn't connect any up. He showed us the CT and PT scans and we saw the spots that denoted cancer cells. He doesn't want to do surgery on his jaw area as it would be very invasive and he prefers to get a biopsy and a liver section. He was very thorough and spent more than an hour talking and explaining. But there still isn't a decision as to what will be done till the liver biopsy is done tomorrow. Most assuredly there will be chemo and perhaps radiation on the jaw area to see if that tumor can be shrunk down...thus giving him relief from the pressure and pain.
We will see the oncologist again this Friday Dec. 10th. So until then there is nothing to report...Except to send many of you thanks for your love, concern and prayers and for fasting and prayer. We feel the comfort of having good and loving family and friends in our lives.
We met with Dr. Wallentine, the oncologist, and he asked lots of questions, wanting to get Robin's history and background. I think he wanted to know if he had any exposure to cancer causing environments but couldn't connect any up. He showed us the CT and PT scans and we saw the spots that denoted cancer cells. He doesn't want to do surgery on his jaw area as it would be very invasive and he prefers to get a biopsy and a liver section. He was very thorough and spent more than an hour talking and explaining. But there still isn't a decision as to what will be done till the liver biopsy is done tomorrow. Most assuredly there will be chemo and perhaps radiation on the jaw area to see if that tumor can be shrunk down...thus giving him relief from the pressure and pain.
We will see the oncologist again this Friday Dec. 10th. So until then there is nothing to report...Except to send many of you thanks for your love, concern and prayers and for fasting and prayer. We feel the comfort of having good and loving family and friends in our lives.
Friday, December 3, 2010
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.
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.
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