Normally I am nostalgic as New Year's Eve approaches. Not this year. Out with the old and in with the new.
Ernie continues to work hard at getting better. His goal is to be narcotic free on January 1--no small feat given that the oral thrush is still hanging around after 10 days on antibiotics. Today, at the suggestion of the Hopkins Oncologist, we went to Urgent Care to get a swab of the thrush. This will be cultured to see if it is resistant to the current antibiotic. If it is, the docs will change meds when we are at Hopkins next Tuesday. If not, they will increase the dose.
His other goal is to get rid of the feeding tube by the end of January. Right now, he is managing to consume about one-quarter of his calories by mouth. We need to get to 100% before the tube can be removed. The thrush makes eating uncomfortable plus Ernie's taste buds are still out of commission so eating is more of a chore than a pleasure at this point. However, he is highly motivated.
Despite the feeding tube, Ernie has lost almost 20 pounds, right at the average we are told. (Those who refuse the tube lose 40 pounds on average!) Since he gained weight in anticipation, he is about 15 pounds shy of his pre-treatment weight. This has taken a toll on his stamina so we are also making the typical New Year's resolution to get back in shape.
We continue to be optimistic about the New Year and are more than ready to resume a normal life.
Friday, December 30, 2011
Sunday, December 25, 2011
Good Tidings
Today we got a wonderful gift--Ernie was able to eat a poached egg! This is the first food he's chewed in at least two months. He also ate half a banana with his pudding. The icing on the cake: he is taking far less pain medicine. Today he had one dose of immediate release oxycodone; a week ago he was taking the maximum six doses. All of this came at a time when we really needed some encouraging news.
Merry Christmas to all!
Merry Christmas to all!
Wednesday, December 21, 2011
Home Again
We felt like Dorothy when we walked into the house tonight: "there is no place like home." Even a nice hotel room is not fun when you don't feel well.
We both slept fitfully last night--worried about the drug interaction. The doctor cautioned me to "monitor Ernie's breathing". So much was happening during the appointment, I didn't even think to ask her what she meant by that. As bedtime approached, I decided to set the alarm for 1 hour intervals so I could wake up and check on Ernie.
This morning, I decided to call the triage nurse to see if this is really necessary. Turns out, it is the prudent thing to do at least for a few days. Although JH has not lost a patient due to this drug interaction, it is reported in the literature. The only other option is to wait two more weeks--the time it takes to gradually withdraw him from the fentanyl painkiller (an opiate)--before addressing the thrush, somthing the docs do not want to do. Just call us "sleepless in Winston-Salem."
We both slept fitfully last night--worried about the drug interaction. The doctor cautioned me to "monitor Ernie's breathing". So much was happening during the appointment, I didn't even think to ask her what she meant by that. As bedtime approached, I decided to set the alarm for 1 hour intervals so I could wake up and check on Ernie.
This morning, I decided to call the triage nurse to see if this is really necessary. Turns out, it is the prudent thing to do at least for a few days. Although JH has not lost a patient due to this drug interaction, it is reported in the literature. The only other option is to wait two more weeks--the time it takes to gradually withdraw him from the fentanyl painkiller (an opiate)--before addressing the thrush, somthing the docs do not want to do. Just call us "sleepless in Winston-Salem."
Tuesday, December 20, 2011
Thrush Sighted in Baltimore
It was very comforting to be back in the care of our wonderful doctors.
Ernie started the day with a swallowing study. Unfortunately the study showed he is still at risk for aspiration. This means at least two more weeks of sleeping sitting up.
Next up was the Radiation Oncologist whose job it is to evaluate the effect of radiation on the throat and mouth. He invited the Medical Oncologist to the appointment too so she could view the Endoscopy and do a joint consoltation. Unlike the Winston-Salem doctors who "couldn't be sure" if Ernie had oral thrush or not, these doctors agreed that he had thrush and a rather severe case at that. They feel that the thrush is largely responsible for the swelling and the pain. On a 5 point scale where 5 is the worst case of thrush, they rated him a 4.
The docs in Winston-Salem had started Ernie on a mild thrush drug but it was obviously not effective. So, tonight we start on the strongest thrush drug. Ernie was on this drug last time he had thrush and did fine. This time, however, he is on some narcotics that can cause some scary interactions (ie-you can stop breathing). To reduce this risk, we will cut back on the narcotics. Everyone agrees that more pain is the preferable option.
We were coming back to Baltimore on January 3 for an MRI to check for cancer cells. Now we will also use that visit to reevaluate the state of healing in the throat. Best case is that eliminating the thrush eliminates all problems. Another possible outcome is that there are complications with his throat and voice box that will need to be addressed. The Radiation Oncologist said Ernie's throat had the appearance of someone that had the full 7 weeks of radiation, which could cause the complications. We are trying to focus on the upside.
Ernie started the day with a swallowing study. Unfortunately the study showed he is still at risk for aspiration. This means at least two more weeks of sleeping sitting up.
Next up was the Radiation Oncologist whose job it is to evaluate the effect of radiation on the throat and mouth. He invited the Medical Oncologist to the appointment too so she could view the Endoscopy and do a joint consoltation. Unlike the Winston-Salem doctors who "couldn't be sure" if Ernie had oral thrush or not, these doctors agreed that he had thrush and a rather severe case at that. They feel that the thrush is largely responsible for the swelling and the pain. On a 5 point scale where 5 is the worst case of thrush, they rated him a 4.
The docs in Winston-Salem had started Ernie on a mild thrush drug but it was obviously not effective. So, tonight we start on the strongest thrush drug. Ernie was on this drug last time he had thrush and did fine. This time, however, he is on some narcotics that can cause some scary interactions (ie-you can stop breathing). To reduce this risk, we will cut back on the narcotics. Everyone agrees that more pain is the preferable option.
We were coming back to Baltimore on January 3 for an MRI to check for cancer cells. Now we will also use that visit to reevaluate the state of healing in the throat. Best case is that eliminating the thrush eliminates all problems. Another possible outcome is that there are complications with his throat and voice box that will need to be addressed. The Radiation Oncologist said Ernie's throat had the appearance of someone that had the full 7 weeks of radiation, which could cause the complications. We are trying to focus on the upside.
Sunday, December 18, 2011
On the Road Again
Tomorrow we leave for Ernie's 6 week follow-up at Johns Hopkins. We will drive up tomorrow, spend the day at JH on Tuesday and drive back on Wednesday.
The pain is not as bad as it was last week. In fact, Ernie has reduced the number of pain pills he's taking in the last few days. However, despite his strong desire to eat, he hasn't been able to get down any "real" food other than pudding. The other things he's tried--mashed potatoes and gravy, scrambled eggs, cooked carrots--either get stuck in his throat or cause a strong burning sensation. We are anxious to know when this and other side effects will disappear. Check back for the answers on Wednesday.
The pain is not as bad as it was last week. In fact, Ernie has reduced the number of pain pills he's taking in the last few days. However, despite his strong desire to eat, he hasn't been able to get down any "real" food other than pudding. The other things he's tried--mashed potatoes and gravy, scrambled eggs, cooked carrots--either get stuck in his throat or cause a strong burning sensation. We are anxious to know when this and other side effects will disappear. Check back for the answers on Wednesday.
Wednesday, December 14, 2011
Pain, Pain Go Away
When we were at the ENT doc on Friday, he told us to come back this week if the antibiotic for thrush did not help with the pain. So today we reluctantly returned to see Dr. Poor Beside Manner. We liked him better today.
After conferring with the Medical Oncologist in Baltimore, who conferred with the Radiation Oncologist in Baltimore, the three of them reached the following conclusions:
1. The pain stems primarily from the chemo/radiation treatments, which are causing intense mucositis. As Ernie's mouth heals, the pain will diminish. It is not uncommon to have pain for another one to three weeks. Somehow we got our expectations set way wrong on this one.
2. He may have oral thrush--it is not uncommon in these circumstances--but at this point it is not adding significantly to the pain. He is to continue taking these meds until he sees the docs in Baltimore on Tuesday.
We were so hoping to get the feeding tube out when we visit Hopkins next week but it was not meant to be. Our next opportunity to get it removed will be January 3. That would make it a Happy New Year indeed!
After conferring with the Medical Oncologist in Baltimore, who conferred with the Radiation Oncologist in Baltimore, the three of them reached the following conclusions:
1. The pain stems primarily from the chemo/radiation treatments, which are causing intense mucositis. As Ernie's mouth heals, the pain will diminish. It is not uncommon to have pain for another one to three weeks. Somehow we got our expectations set way wrong on this one.
2. He may have oral thrush--it is not uncommon in these circumstances--but at this point it is not adding significantly to the pain. He is to continue taking these meds until he sees the docs in Baltimore on Tuesday.
We were so hoping to get the feeding tube out when we visit Hopkins next week but it was not meant to be. Our next opportunity to get it removed will be January 3. That would make it a Happy New Year indeed!
Saturday, December 10, 2011
Tales from the ER
Why is it that ER visits inevitably fall on the weekends when things are incredibly busy? Last night, after our visit to the ENT doc who weighed Ernie but didn't bother to take his temperature, Ernie spiked a fever of 102. The directions on the narcotic patch warn you to call your doctor immediately if this happens. The on call doc at Hopkins was not worried about the patch but was worried about a possible infection. Evidently there can be open wounds in the throat when you have mucositus and this can lead to a blood infection. Also, if your white blood count falls too low you can get something called neutropenia. Neither of these conditions are good news for cancer patients so she directed us to the ER.
After running blood counts, analyzing urine, doing a swab to check for the flu and a chest xray for pneumonia, they did not find anything out of line. His white blood counts are far below normal but in the expected range for cancer patients. However, the blood cultures to test for blood infection take a few days so they decided to put him on an antibiotic to be safe.
Since Ernie can't swallow pills right now due to the swelling in his throat, they gave him the antibiotics intravenously. They said this would take about an hour. After half an hour, a nurse came in with the discharge papers and said we could go. She unhooked the monitor and removed his IV. No sooner had she finished, she realized that there was still half a bag of antibiotics remaining! Poor Ernie. The nurse had to stick him again---his third of the night--and put in a new IV so he could get the full dose of antibiotics.
The doctor made up for the follies of the nursing staff. He was incredibly competent. He assured Ernie that even though his mouth and tongue are extremely painful, he saw lots of signs of healing. He predicted one to two more weeks and then significant relief from the pain in his mouth. He also told us that the throat is the last area to heal and not to be alarmed if it took longer to improve. His bedside manner totally made up for our experience with the ENT on Friday.
After running blood counts, analyzing urine, doing a swab to check for the flu and a chest xray for pneumonia, they did not find anything out of line. His white blood counts are far below normal but in the expected range for cancer patients. However, the blood cultures to test for blood infection take a few days so they decided to put him on an antibiotic to be safe.
Since Ernie can't swallow pills right now due to the swelling in his throat, they gave him the antibiotics intravenously. They said this would take about an hour. After half an hour, a nurse came in with the discharge papers and said we could go. She unhooked the monitor and removed his IV. No sooner had she finished, she realized that there was still half a bag of antibiotics remaining! Poor Ernie. The nurse had to stick him again---his third of the night--and put in a new IV so he could get the full dose of antibiotics.
The doctor made up for the follies of the nursing staff. He was incredibly competent. He assured Ernie that even though his mouth and tongue are extremely painful, he saw lots of signs of healing. He predicted one to two more weeks and then significant relief from the pain in his mouth. He also told us that the throat is the last area to heal and not to be alarmed if it took longer to improve. His bedside manner totally made up for our experience with the ENT on Friday.
Friday, December 9, 2011
Plan B
Our plan to return to Baltimore on the 13th fell apart. Ernie actually has five "well coordinated" appointments on the 20th and it proved impossible to get them all rescheduled for the 13th.
As a back up, we decided to seek the opinion of a local Ear, Nose and Throat doctor. Ernie's primary care physician does not have the facilities to do the endoscopy so he could not be certain if Ernie had oral thrush or the extent of the problem. The ENT is set up to do this.
Unfortunately Ernie's normal ENT doesn't work on Fridays. The ENT doc who subbed for her did not have the best bedside manner and his comments were upsetting to Ernie. He said that Ernie had " the worst case of mucositis that he had ever seen." Mucositis is an inflammation of the mucous membrane that lines all body passages that deal with air. Oral mucosa are the most sensitive of all and mucositis in this area can be quite painful as Ernie will testify. The mucositis is a side effect of chemotherapy and radiation.
When we inquired how long the mucositis might last, the doctor quipped "forever" at some level. We have not heard this before. All of the diploma's on the guys walls referenced surgery so we are hoping that he was speaking out of turn.
At any rate, he did not rule out that Ernie might have oral thrush. He suggested that Ernie continue his antibiotic treatments until Monday and, if he still has significant pain at that time, come back and see his normal ENT.
As a back up, we decided to seek the opinion of a local Ear, Nose and Throat doctor. Ernie's primary care physician does not have the facilities to do the endoscopy so he could not be certain if Ernie had oral thrush or the extent of the problem. The ENT is set up to do this.
Unfortunately Ernie's normal ENT doesn't work on Fridays. The ENT doc who subbed for her did not have the best bedside manner and his comments were upsetting to Ernie. He said that Ernie had " the worst case of mucositis that he had ever seen." Mucositis is an inflammation of the mucous membrane that lines all body passages that deal with air. Oral mucosa are the most sensitive of all and mucositis in this area can be quite painful as Ernie will testify. The mucositis is a side effect of chemotherapy and radiation.
When we inquired how long the mucositis might last, the doctor quipped "forever" at some level. We have not heard this before. All of the diploma's on the guys walls referenced surgery so we are hoping that he was speaking out of turn.
At any rate, he did not rule out that Ernie might have oral thrush. He suggested that Ernie continue his antibiotic treatments until Monday and, if he still has significant pain at that time, come back and see his normal ENT.
Thursday, December 8, 2011
Back to Baltimore
Ernie's pain level is somewhat improved today but not where it should be. So, we decided to take the doctor up on her offer to see Ernie a week early (December 13 instead of the 20th). I know Ernie wishes the appointment was today. We have supreme confidence in the JH staff/s ability to figure out what is going on inside his throat and put him back on the path to recovery.
Wednesday, December 7, 2011
Thrush Strikes Again
It is now 4 weeks PT (post treatment) and no real improvement to speak of. In fact, Ernie's throat and mouth seemed to get even sorer over the weekend. Suspecting another case of thrush, we returned to his primary care physician on Monday. The doctor was on the fence about the diagnosis but prescribed some antibiotics just in case. At the same time, he had Ernie put on a third pain patch to try to reduce the pain. Between the antibiotics and the patch, Ernie got some relief.
We also alerted his medical oncologist at JH to his situation. She assured us that this pain is not normal and that he should be feeling better by now. If he does not feel remarkably better tomorrow, we will go back to Baltimore next week instead of waiting for our December 20 appointment so the docs there can figure out what is going on.
We also alerted his medical oncologist at JH to his situation. She assured us that this pain is not normal and that he should be feeling better by now. If he does not feel remarkably better tomorrow, we will go back to Baltimore next week instead of waiting for our December 20 appointment so the docs there can figure out what is going on.
Saturday, December 3, 2011
More Medical Malfunctions
With two advanced degrees in this household, you would think we could handle something as simple as the application of a trans dermal patch. The small pouch that holds the patch refers you to the "instructions supplied." Dutifully, we read all 12 pages of warnings, cautions, side effects and the paragraph about how to apply the patch ("press on to clean, dry skin for 30 seconds until patch sticks; use tape if needed"). After 48 hours, Ernie's pain persisted so we called the doctor who said we could add a second patch. This time, the patch did not stick as well so we got suspicious. When we dug to the bottom of the box of patches, we found another set of directions which included a step not found on the first set: peal off the film covering before applying! Poor Ernie went 2 and 1/2 days missing a key part of his pain meds due to the omission. No wonder he was miserable.
He has had the patch on properly for 24 hours and it seems to be providing some relief but not enough. His throat and mouth are so sore he still can't eat and it even hurts to drink water. Tonight we will go ahead and add the second patch.
We are corresponding with a woman and her husband that we met during radiation. She was being treated for colon cancer and rang the bell a week before Ernie did. She said that after week 4, she began to feel much better. Next Tuesday will be a month for Ernie. Hope springs eternal.
He has had the patch on properly for 24 hours and it seems to be providing some relief but not enough. His throat and mouth are so sore he still can't eat and it even hurts to drink water. Tonight we will go ahead and add the second patch.
We are corresponding with a woman and her husband that we met during radiation. She was being treated for colon cancer and rang the bell a week before Ernie did. She said that after week 4, she began to feel much better. Next Tuesday will be a month for Ernie. Hope springs eternal.
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