Went back to the otolaryngologist today. Ernie said it was the first time he ever looked forward to going to the doctor. I was unsure if he would remove the remaining staples today but, much to Ernie's delight, he deemed them ready to go. In a matter of a minute or two, Ernie was staple free.
We still have to clean and Vaseline the incision daily until it looks more completely healed. Also, the doctor gave us some "steri-strips" to put on "in case it does come apart"!!! (Exclamation points are mine as I would NOT look forward to this.) If we haven't needed to use the steri-strips by end of day Friday, Ernie is cleared to play golf. He is not sure his stamina is there yet, but he is working hard at his PT to get back on the course.
Ernie also quizzed the doctor about his voice and swallowing. He feels both were much better pre-op. The doctor explained that this operation is quite hard on the system because of the amount of pulling and trauma to the nerves and vessels. At four weeks post-op, he said it was premature to worry. We will see the doctor again in July and, if matters have not improved as he expects them to, we will address things then. All in all, a good report.
Our next appointment is in Baltimore the first week in June to repeat the PET/CT scan and insure that all traces of cancer are gone. I will post again when we have scan results. In the meantime, Ernie is declaring victory and preparing to resume his normal schedule as soon as possible.
Tuesday, April 9, 2013
Monday, April 1, 2013
Half the Bling
We visited the local otolaryngologist today and, after examining Ernie, he decided to remove half of the staples and leave half in for another week. This means another week of daily cleaning and twice a day "polishing" (ie-applying a layer of vaseline). I don't mind but I know that Ernie is more than ready to get rid of his jewelry. Even though he has no restrictions except his golfing ban, the staples do pinch and pull. To avoid the discomfort, he tends to put his head down and then he ends up with a stiff neck. So hopefully this will all be over with next week. I will post again next Monday (April 8) once he sees the doc.
Tuesday, March 26, 2013
A Body In Motion
Ernie started his physical therapy today. The goal is to regain the range of motion in turning his head side to side (so he can drive) and in his left shoulder (so he can play golf again). After moving Ernie's arm this way and that, the Physical Therapist seemed optimistic that about getting Ernie's shoulder back to his pre-op condition. He gave him four exercises to do at home, plus he will see him twice a week for a couple of weeks.
Ernie's neck is a different story. Although he never complains, I can tell the staples are bothering him. His incision needs to be cleaned every morning and then a thick layer of Vaseline applied in the morning and before bedtime. I presume the Vaseline is to protect the incision and to keep the skin supple so the staples won't pull as much. Despite that, Ernie's instinctive reaction is to turn his head as little as possible. Once the staples are removed (next Monday we hope), the Physical Therapist can better determine what protocol is needed.
Ernie's neck is a different story. Although he never complains, I can tell the staples are bothering him. His incision needs to be cleaned every morning and then a thick layer of Vaseline applied in the morning and before bedtime. I presume the Vaseline is to protect the incision and to keep the skin supple so the staples won't pull as much. Despite that, Ernie's instinctive reaction is to turn his head as little as possible. Once the staples are removed (next Monday we hope), the Physical Therapist can better determine what protocol is needed.
Saturday, March 23, 2013
Progress??
Finally got news from the Tumor Board. They are not recommending radiation at this time!! Ernie is very happy. He was considering taking a pass even if the Board had recommended radiation. Very literally, "once burned, twice shy." We will go for the June PET scan as planned. Next steps will depend on what the scan shows.
The numbness in Ernie's shoulder neck, lip and ear is starting to go away. This is good news and bad news. He said the numbness was very weird and he worried that the feeling would never return to this area. However, the numbness also meant no pain. So, he is feeling pretty achy now--especially his shoulder. As usual, he refuses to take any pain killers. He starts his physical therapy on Monday. We are hoping that will help alleviate the aches and pains.
The numbness in Ernie's shoulder neck, lip and ear is starting to go away. This is good news and bad news. He said the numbness was very weird and he worried that the feeling would never return to this area. However, the numbness also meant no pain. So, he is feeling pretty achy now--especially his shoulder. As usual, he refuses to take any pain killers. He starts his physical therapy on Monday. We are hoping that will help alleviate the aches and pains.
Wednesday, March 20, 2013
The Results Are In
The pathology report came back today and, among all the scar tissue, they found a malignant tumor .06 cm (about 1/6th of an inch) in size. Right now, we have very mixed emotions.
We are both happy that Ernie's doctors made the correct and, faced with Ernie's scleroderma, courageous call to do the surgery. We are also happy the surgeon made the difficult decision to sacrifice Ernie's shoulder nerve (it was running right through the middle of the mass) to get all of the potentially cancerous tissue. In fact, Ernie's skin was so difficult to work with, the surgeon told us he took a more generous amount of tissue than normal so neither of them would have to go through this again. We are especially happy because Ernie seems to be recovering well and studies show that people who have "rescue surgery" for head and neck cancer actually have a lower five year mortality rate than those who don't have it. It seems that scans don't always detect these very small tumors, which allows them to spread. We are very grateful that this tiny tumor was discovered and removed before it could do irreparable damage.
Ernie is not so happy that he will now certainly be required to continue the dreaded PET scans. Our hope is that they may be less frequent than the quarterly schedule we have been on. The only other unknown is whether there will be more radiation. Our surgeon will present the results of the pathology report to the Tumor Board tomorrow and we will see what they have to say.
We are both happy that Ernie's doctors made the correct and, faced with Ernie's scleroderma, courageous call to do the surgery. We are also happy the surgeon made the difficult decision to sacrifice Ernie's shoulder nerve (it was running right through the middle of the mass) to get all of the potentially cancerous tissue. In fact, Ernie's skin was so difficult to work with, the surgeon told us he took a more generous amount of tissue than normal so neither of them would have to go through this again. We are especially happy because Ernie seems to be recovering well and studies show that people who have "rescue surgery" for head and neck cancer actually have a lower five year mortality rate than those who don't have it. It seems that scans don't always detect these very small tumors, which allows them to spread. We are very grateful that this tiny tumor was discovered and removed before it could do irreparable damage.
Ernie is not so happy that he will now certainly be required to continue the dreaded PET scans. Our hope is that they may be less frequent than the quarterly schedule we have been on. The only other unknown is whether there will be more radiation. Our surgeon will present the results of the pathology report to the Tumor Board tomorrow and we will see what they have to say.
Tuesday, March 19, 2013
Almost Home
Ernie's congestion and coughing are subsiding so he rested better last night. As a result, we decided to leave for Winston-Salem on Thursday, five days earlier than planned! Tonight and tomorrow AM we are spending time with our good friends, Dennis and Lesley, who drove down from NY to check on us. Tomorrow afternoon we will pack our few belongings and hit the road bright and early Thursday morning. Can't wait to sleep in our own bed.
Monday, March 18, 2013
Out Damn Drain
We just got back from Johns' Hopkins. This time, Ernie returned with one less reminder of his surgery.
Our first stop was the nurse's office--she was assigned to remove the drain from his neck. I had been "stripping" the drain tube of all the fluids twice per day and measuring and logging the output. Once the output drops to less than 24 ml per day, the drain can come out. It is not a particularly glamorous job but I didn't mind that much. Anyway, I brought the last 12 hours worth of output so she could see the color and check my work--didn't want her to take the drain out before it was ready. Well, you would have thought I was handing her krptonite! She was like "yuck--I don't want to see that". Her reaction certainly made me feel more confident about my budding nursing skills.
The doctor then came in and admired his handiwork and answered all of our questions. We learned that the swelling in Ernie's face and neck could take weeks to go away but it will. He is also experiencing numbness on the left side of his face, including his ear. The area of numbness will decrease over time but he will always have some numbness, especially around the incision. Likewise, his range of motion in his left arm will be permanently reduced but can be improved with PT. The best news is that he can start playing golf in a month--sooner than we thought--and will get to claim that he has some functional deficit. (He really said that Ernie will have "very little functional deficit".) Ernie is allowed to drive as long as he is off the narcotics (he is) and can turn his head enough to see the blind spots (this may take some PT). Finally, he can not lift over 10 pounds for two weeks, then no restrictions. All in all, an excellent outcome.
The staples are still in place and will need to stay for another two to three weeks. However, the doc was fine with having Ernie's local otolaryngologist remove them. So, we are going to stay until Thursday or Friday to let Ernie get his strength back and then head home early!
Our first stop was the nurse's office--she was assigned to remove the drain from his neck. I had been "stripping" the drain tube of all the fluids twice per day and measuring and logging the output. Once the output drops to less than 24 ml per day, the drain can come out. It is not a particularly glamorous job but I didn't mind that much. Anyway, I brought the last 12 hours worth of output so she could see the color and check my work--didn't want her to take the drain out before it was ready. Well, you would have thought I was handing her krptonite! She was like "yuck--I don't want to see that". Her reaction certainly made me feel more confident about my budding nursing skills.
The doctor then came in and admired his handiwork and answered all of our questions. We learned that the swelling in Ernie's face and neck could take weeks to go away but it will. He is also experiencing numbness on the left side of his face, including his ear. The area of numbness will decrease over time but he will always have some numbness, especially around the incision. Likewise, his range of motion in his left arm will be permanently reduced but can be improved with PT. The best news is that he can start playing golf in a month--sooner than we thought--and will get to claim that he has some functional deficit. (He really said that Ernie will have "very little functional deficit".) Ernie is allowed to drive as long as he is off the narcotics (he is) and can turn his head enough to see the blind spots (this may take some PT). Finally, he can not lift over 10 pounds for two weeks, then no restrictions. All in all, an excellent outcome.
The staples are still in place and will need to stay for another two to three weeks. However, the doc was fine with having Ernie's local otolaryngologist remove them. So, we are going to stay until Thursday or Friday to let Ernie get his strength back and then head home early!
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