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.
Tuesday, March 26, 2013
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!
Sunday, March 17, 2013
Getting Stronger Everyday
After a rough night of congestion and coughing, Ernie really rallied today. Since Charley and Heather left, we were on our own.
We started by watching Carolina lose to Miami (at least there was a Winston Salem guy on the team). Ernie felt that Roy's jacket put Carolina at at disadvantage.
Then our friend, Javin Hutchinson came from DC to visit us. While he was here, Ernie's surgeon called and invited us to come over to meet his wife and new baby--both darling. We also got to see how the condo owner's live--much nicer than the rentals as you would expect.
I think we will wind up the day at the James Joyce Pub to celebrate St. Patty's Day. It was wild there yesterday but the revelers seem to have worn themselves out last night so perhaps we can get in. For the grand finale, Bill Whitlatch called to remind us The Quiet Man (John Wayne) is on tonight so we will tune in to that.
Tomorrow, Dr. Agrawal told us to come by the office and he will take out Ernie's drain. He will also look at the stitches. If he wants to leave the stitches in a few more weeks, we will may go back home early and let a local doc remove them. Alternatively, Ernie mentioned the DIY approach with his Office Depot staple puller. I can tell he is feeling better.
We started by watching Carolina lose to Miami (at least there was a Winston Salem guy on the team). Ernie felt that Roy's jacket put Carolina at at disadvantage.
Then our friend, Javin Hutchinson came from DC to visit us. While he was here, Ernie's surgeon called and invited us to come over to meet his wife and new baby--both darling. We also got to see how the condo owner's live--much nicer than the rentals as you would expect.
I think we will wind up the day at the James Joyce Pub to celebrate St. Patty's Day. It was wild there yesterday but the revelers seem to have worn themselves out last night so perhaps we can get in. For the grand finale, Bill Whitlatch called to remind us The Quiet Man (John Wayne) is on tonight so we will tune in to that.
Tomorrow, Dr. Agrawal told us to come by the office and he will take out Ernie's drain. He will also look at the stitches. If he wants to leave the stitches in a few more weeks, we will may go back home early and let a local doc remove them. Alternatively, Ernie mentioned the DIY approach with his Office Depot staple puller. I can tell he is feeling better.
Saturday, March 16, 2013
Apartment, Sweet Apartment
We got back to the apartment about 5 PM last night. Even though it is only a 3-mile car ride and two elevator trip, I could tell it wore Ernie out. Heather and Charley picked up some groceries so we could eat in. Ernie has an appetite but his sore throat is limiting him to soft food, like the soup he had for dinner. Also anything remotely strong-flavored burns, even the cherry children's Tylenol syrup.
He has sworn off the narcotic painkillers as he says they make him feel dopey and cold. His last prescription pain killer was 24 hours ago. He is tired and a little achy but doing remarkably well. I am so proud of him.
Thanks to all for your messages of encouragement and ideas for how to explain the source of the incision. He is trying to decide between using it to embellish his war record, claiming he was a stunt double for Clint Eastwood in Hang'em High, or avoiding the topic completely and using the sylish new scarf that Heather and Charley bought him.
He has sworn off the narcotic painkillers as he says they make him feel dopey and cold. His last prescription pain killer was 24 hours ago. He is tired and a little achy but doing remarkably well. I am so proud of him.
Thanks to all for your messages of encouragement and ideas for how to explain the source of the incision. He is trying to decide between using it to embellish his war record, claiming he was a stunt double for Clint Eastwood in Hang'em High, or avoiding the topic completely and using the sylish new scarf that Heather and Charley bought him.
Friday, March 15, 2013
Early Release!
After examining Ernie this morning, the surgeon decided Ernie was good to go back to the apartment, which the doctor declared, is less germy and more interesting. When Ernie expressed some reservations, the doctor--who lives in the condo building next door to the place we are renting--said not too worry "I will be your doctor anytime--just call me and I will come over." Such great care is why we love it here.
Heather, Charley and I already learned how to clean his drain. This has to be done twice a day until it is removed in about 5 days. He also has to learn his PT exercises for his shoulder and how to clean his incision. Once this checklist is completed, he will be released.
The incision is larger than we expected, extending almost ear to ear and accentuated with all the staples. Also, the left side of his face is quite swollen. Ernie joked that he looks like a cross between John McCain and Frankenstein. I told him he needed a good story to tell--perhaps that he got in a bar fight in Fells Point (old sailing port area where Edgar Allen Poe died) and got cut with a Natty Boh bottle. The surgeon said the incision should be almost invisible eventually and the swelling will be gone in a month or so.
Ernie's biggest complaint right now is his throat, which is very sore from the breathing tube. However, he is free to eat whatever he can. He managed to get a few bites of scrambled eggs and some pureed peaches down this morning, making his wife very happy.
Heather, Charley and I already learned how to clean his drain. This has to be done twice a day until it is removed in about 5 days. He also has to learn his PT exercises for his shoulder and how to clean his incision. Once this checklist is completed, he will be released.
The incision is larger than we expected, extending almost ear to ear and accentuated with all the staples. Also, the left side of his face is quite swollen. Ernie joked that he looks like a cross between John McCain and Frankenstein. I told him he needed a good story to tell--perhaps that he got in a bar fight in Fells Point (old sailing port area where Edgar Allen Poe died) and got cut with a Natty Boh bottle. The surgeon said the incision should be almost invisible eventually and the swelling will be gone in a month or so.
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| Ernie showing off his incision |
Ernie's biggest complaint right now is his throat, which is very sore from the breathing tube. However, he is free to eat whatever he can. He managed to get a few bites of scrambled eggs and some pureed peaches down this morning, making his wife very happy.
Thursday, March 14, 2013
The Time Has Come
We arrived at the Kimel Cancer Center for our 6:45 check-in. After registration, Ernie was taken back to pre-op where they will start his IV. Once that is done, I will be called back and allowed to wait with him until the doctor arrives and the surgery begins.
I will be notified once the incision is made and then given updates--which I will post--every two hours until the surgery is completed. My sister and Charley will be joining me shortly to wait things out.
I will be notified once the incision is made and then given updates--which I will post--every two hours until the surgery is completed. My sister and Charley will be joining me shortly to wait things out.
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| Ernie and his entourage: Charley, Cyndi, Heather |
9:41 AM--The patient coordinator just came to say that the breathing tube was successsfully inserted and the first incision is completed! We were anxiously awaiting this news. In the pre-op consult, the anesthesiologist explained that because Ernie lacks complete range of motion in his neck and can't open his mouth as wide as normal (scleroderma strikes again), they had devised three possible approaches to placing the breathing tube. Unfortunately, all require that Ernie be awake--typically they knock you out before doing this. The docs cautioned him that it would be most unpleasant but they would give him amnesia medicine so that he will not remember. After the operation, they are going to wait until he is fully conscious to remove the breathing tube. Again, this is not SOP but necessary for his safety as they can not quickly reinsert the tube should he have breathing problems while awakening. My poor guy. I hope the amnesia medicine works its magic.
11:58 AM--The doctor just came out to report that Ernie is out of surgery and that he successfully removed the mass, got the breathing tube out fine and that he is awake and talking.. They won't know for a day or two if it was cancer or not. They also removed the Level II to IV lymph nodes just in case as they do not want to have to do more surgery. They did have to cut one shoulder nerve but that should be fine with PT.
Now we just have to worry about the recovery. According to the surgeon "it was a rough surgery". Ernie's skin was so woody and hard that it bent the retractors. He stapled the incision closed--skin was too hard for stitches--and will leave the staples in as long as possible. I will get more info about post-op expectations later. Right now I am just anxious to see him.
7:45 PM-Ernie finally escaped the recovery area and is settled in his room: 4D8 in the Weinberg Cancer Pavillion. He does have a phone in his room, although I don't know the number. He is in good spirits, joking with all the nurses and watching the Wake Forest/Maryland game. They started him on a liquid diet but he is tolerating that well and asked for something more substantial. His throat is sore and swollen so he will need to have a soft diet for a day or two, then hopefully graduate to the good stuff. All in all, he is progressing much faster than I dared hope. However, I still plan to spend the night here to keep an eye on him.
Wednesday, March 13, 2013
Deja Vu All Over Again
We arrived back at "Spinnaker Bay"--the name of our apartment building--about 5:30 PM yesterday. We both commented on how much easier it was to move in the second time around, being familiar with the parking, elevators and where to find the elusive luggage carts to haul your stuff to the apartment. It was also easier because we had only ourselves--no cats--and a minimal amount of luggage.
Dinner was at the Thames Street Oyster House, our favorite restaurant in Baltimore and ususally the number one restaurant on Tripadvisor. It only seats about 40 in the dining room and it was packed. The big draw is the raw bar that features two dozen or so varieties of raw oysters and clams plus cooked lobster tails, shrimp and crab claws. The oysters and clams change with the season. They also have a small but excellent number of entrees, salads and desserts. Ernie loves the raw oysters; myself, not so much. Ernie said we were having "the second to the last supper"--the "last supper" being tonight with my sister and Charley at Aldos in Little Italy.
This morning we took my sister to The Blue Moon, our favorite breakfast joint. Ernie and Heather both had the "Sweet Baby Jesus" (seems we have a religious theme going here): a layer of hash browns topped with fresh chopped tomatoes, lump crab meat tossed with Old Bay (a spice mixture invented in Baltimore), two poached eggs and then smothered in Hollandaise sauce. I had the giant (5 x 5-inch) cinnamon roll. As you have probably guessed from this travelogue, I am trying to get Ernie to put on a few pounds before his surgery as most people are unable to eat solid food for a few days post-op. I don't know if it is working for him, but it surely is for me!
This afternoon we are just hanging out and mentally gearing up for the next few weeks. Ernie had his pre-op physical in Winston-Salem before we left. This morning, the nurse from John's Hopkins called and reminded him of the "rules": nothing to eat or drink after midnight (the nothng to drink is especially hard for him with his lack of saliva); no meds in the AM; arrive at the hospital by 6:45 AM. I think we are as ready as we can be.
The surgery is at 8:45 and is supposed to take about 4 hours. I will be posting updates as they become available. Stay tuned...
Dinner was at the Thames Street Oyster House, our favorite restaurant in Baltimore and ususally the number one restaurant on Tripadvisor. It only seats about 40 in the dining room and it was packed. The big draw is the raw bar that features two dozen or so varieties of raw oysters and clams plus cooked lobster tails, shrimp and crab claws. The oysters and clams change with the season. They also have a small but excellent number of entrees, salads and desserts. Ernie loves the raw oysters; myself, not so much. Ernie said we were having "the second to the last supper"--the "last supper" being tonight with my sister and Charley at Aldos in Little Italy.
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| Ernie enjoying oysters and the local brew (Natty Boh) |
This afternoon we are just hanging out and mentally gearing up for the next few weeks. Ernie had his pre-op physical in Winston-Salem before we left. This morning, the nurse from John's Hopkins called and reminded him of the "rules": nothing to eat or drink after midnight (the nothng to drink is especially hard for him with his lack of saliva); no meds in the AM; arrive at the hospital by 6:45 AM. I think we are as ready as we can be.
The surgery is at 8:45 and is supposed to take about 4 hours. I will be posting updates as they become available. Stay tuned...
Wednesday, March 6, 2013
T Minus 6 and Counting
In only 6 days we leave the comforts of home for our Baltimore apartment. We were able to get a one bedroom in the same building where we lived in 2011 during Ernie's cancer treatments. It is comforting that we will be in familiar surroundings. The address is:
Spinnaker Bay
707 President Street, Apt. 1008
Baltimore, MD 21202
The apartment has a phone but we plan to rely on our cell phones and e-mails for the duration--arriving March 12 and departing March 26.
I bought Ernie a Kindle Fire to amuse him during his hospital stay and set him up so he can Skype with it. His Skype handle is erniefackelman. Hopefully, he will be on line with it starting March 15.
Ernie will have an entourage at his disposal for the first few days. My sister, Heather, will meet us in Baltimore on March 12 and another "sister", Charley, is arriving on March 13 so both will be with me for the surgery. Other friends generously offered to be with us as well. We truly appreciate the outpouring of support. It does make this a lot easier to know we are not alone.
Spinnaker Bay
707 President Street, Apt. 1008
Baltimore, MD 21202
The apartment has a phone but we plan to rely on our cell phones and e-mails for the duration--arriving March 12 and departing March 26.
I bought Ernie a Kindle Fire to amuse him during his hospital stay and set him up so he can Skype with it. His Skype handle is erniefackelman. Hopefully, he will be on line with it starting March 15.
Ernie will have an entourage at his disposal for the first few days. My sister, Heather, will meet us in Baltimore on March 12 and another "sister", Charley, is arriving on March 13 so both will be with me for the surgery. Other friends generously offered to be with us as well. We truly appreciate the outpouring of support. It does make this a lot easier to know we are not alone.
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