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.
Tuesday, November 29, 2011
No Rest for the Weary
My apologies to all those who have written requesting an update. We haven't had any internet service since last Wednesday. Hopefully, the cable company has made the appropriate repairs so we can stay connected.
Today is the third week anniversary of Ernie's last treatment. We've decided that radiation is the gift that keeps on giving.
After Ernie's neck turned from sunburned to a deep beet red and the blisters multiplied, I emailed the oncologist for advice. It is so refreshing to have the doctors share their email addresses and sometime even their personal cell phone numbers. The oncologist told us how to protect the blisters from infection but cautioned it could be another week or two before we saw any improvement in Ernie's overall condition. That was last Wednesday and, so far, no improvement to speak of.
We've returned to liquid meds as pills are too painful to swallow and/or get stuck in Ernie's throat. Today, I am picking up a patch that will continuously dispense pain meds through his skin. This is the only option to the continuous release pain pills.
Our follow up appointment at Johns Hopkins is December 20 and they promised he would "be a new man" by then. So far, they have been right about everything so we have hanging on to this thought.
Today is the third week anniversary of Ernie's last treatment. We've decided that radiation is the gift that keeps on giving.
After Ernie's neck turned from sunburned to a deep beet red and the blisters multiplied, I emailed the oncologist for advice. It is so refreshing to have the doctors share their email addresses and sometime even their personal cell phone numbers. The oncologist told us how to protect the blisters from infection but cautioned it could be another week or two before we saw any improvement in Ernie's overall condition. That was last Wednesday and, so far, no improvement to speak of.
We've returned to liquid meds as pills are too painful to swallow and/or get stuck in Ernie's throat. Today, I am picking up a patch that will continuously dispense pain meds through his skin. This is the only option to the continuous release pain pills.
Our follow up appointment at Johns Hopkins is December 20 and they promised he would "be a new man" by then. So far, they have been right about everything so we have hanging on to this thought.
Tuesday, November 22, 2011
Pain Management
It is hard to believe that two weeks ago today Ernie rang the bell signifying the end of his radiation treatments. Since then the skin on his neck has turned from Hawaiian tan, to sunburn and now to a blistered mess. His throat has also gotten increasingly sore. No wonder, if the outside is worse I guess it stands to reason that the inside is worse as well.
Since narcotic painkiller prescriptions must be written in-state, today we visited Ernie's primary care doctor to get refills. Between the doctor's office, the pharmacy and a stop at the supermarket to get more pudding, we were only gone for a few hours. Still, Ernie was exhausted by the effort.
Looking back at the discharge notes from the doctor, he cautioned that we may not see any improvement for at least two weeks. Unfortunately, it looks like he was right. Ernie is such an over achiever, I guess we set our sights too high in terms of conquering the pain. Despite the pain, however, Ernie has been doing a stellar job of maintaining his weight and consuming his three puddings per day. And, we still wake up every morning optimistic about his recovery.
Since narcotic painkiller prescriptions must be written in-state, today we visited Ernie's primary care doctor to get refills. Between the doctor's office, the pharmacy and a stop at the supermarket to get more pudding, we were only gone for a few hours. Still, Ernie was exhausted by the effort.
Looking back at the discharge notes from the doctor, he cautioned that we may not see any improvement for at least two weeks. Unfortunately, it looks like he was right. Ernie is such an over achiever, I guess we set our sights too high in terms of conquering the pain. Despite the pain, however, Ernie has been doing a stellar job of maintaining his weight and consuming his three puddings per day. And, we still wake up every morning optimistic about his recovery.
Saturday, November 19, 2011
Home Sweet Home
Home at last.
We left Baltimore at 10:30 AM and arrived in Winston-Salem at 5:30 PM. We went the scenic route through Harper's Ferry and the Appalachian Mountains--a little longer than the DC route but much less traffic. It was a beautiful day and thanks to the power of Feliway (feline facial pheromones--thank you Sue Stevens) there was nary a peep from the cats in the back seat. This is truly a miracle as they hate the car and usually remind us of this constantly whenever we take them with us.
On this trip, both cats AND Ernie dozed most of the trip. Ernie's symptoms continue to develop--his neck turned from tan to red (one week after the end of radiation) to blistered (yesterday). His throat has become progressively sorer as well. Given the looks of his neck, one can just imagine what is going on inside his throat.
It seems like we have been gone forever--I guess 4 1/2 months is a long time. Since we just finished remodeling before we left, it was hard to remember what the house even looked like.
It turned out to be a very emotional home coming. When we walked in the door, we were greeted by this,signed by many of our great friends....
I must admit, I cried. It has been such a long journey but, as the old saying goes, "many hands make light work." Our friends lifted our spirits when things seemed bleak. It is great to be back among y'all. We look forward to reconnecting in the next few weeks as Ernie regains his strength and his voice.
We left Baltimore at 10:30 AM and arrived in Winston-Salem at 5:30 PM. We went the scenic route through Harper's Ferry and the Appalachian Mountains--a little longer than the DC route but much less traffic. It was a beautiful day and thanks to the power of Feliway (feline facial pheromones--thank you Sue Stevens) there was nary a peep from the cats in the back seat. This is truly a miracle as they hate the car and usually remind us of this constantly whenever we take them with us.
On this trip, both cats AND Ernie dozed most of the trip. Ernie's symptoms continue to develop--his neck turned from tan to red (one week after the end of radiation) to blistered (yesterday). His throat has become progressively sorer as well. Given the looks of his neck, one can just imagine what is going on inside his throat.
It seems like we have been gone forever--I guess 4 1/2 months is a long time. Since we just finished remodeling before we left, it was hard to remember what the house even looked like.
It turned out to be a very emotional home coming. When we walked in the door, we were greeted by this,signed by many of our great friends....
I must admit, I cried. It has been such a long journey but, as the old saying goes, "many hands make light work." Our friends lifted our spirits when things seemed bleak. It is great to be back among y'all. We look forward to reconnecting in the next few weeks as Ernie regains his strength and his voice.
Wednesday, November 16, 2011
Homeward Bound
After getting some rest, Ernie decided that we should head home to Winston-Salem on Saturday. The big question now is will the remaining "stuff" fit in our car?
I am of the opinion that it will fit while Ernie is more skeptical. Tomorrow we will ask the concierge about storing a few things in the event that Ernie is right. Our next trip to Baltimore is December 20 so it would only be for a month or so. This will give us some flexibility if, at the last minute we have a fit problem. In the meantime, Ernie's job is to rest and feel better.
I am of the opinion that it will fit while Ernie is more skeptical. Tomorrow we will ask the concierge about storing a few things in the event that Ernie is right. Our next trip to Baltimore is December 20 so it would only be for a month or so. This will give us some flexibility if, at the last minute we have a fit problem. In the meantime, Ernie's job is to rest and feel better.
Tuesday, November 15, 2011
Check Ups
Both Ernie and I had check-ups today. When Ernie was first diagnosed with cancer, we volunteered to take part in a study called HOTSPOT (HPV Oral Transmission Study in Partners Over Time). We both provided DNA and filled out questionnaires. Today I got a free head and neck exam to check for base of throat cancer. This time I was on the receiving end of the endoscope. My exam was clear and the doctor advised me on what to watch for. Right now, there is no good data on how many partners of those with HPV cancer will develop cancer themselves. The purpose of the study is to determine this. Note to all of you parents of teens or younger, please consider having both your boys and girls vaccinated for HPV. You would not want your worst enemy to go through this treatment or treatment for cervical cancer.
After my appointment, Ernie saw his medical oncologist. This last week was very rough on him. His pain level was much higher than during his treatments, his mouth sores seemed to get worse, his voice got more hoarse (he can't speak above a whisper) and his skin actually got redder and more sunburned looking even though he was not exposed to any more radiation. We were not able to get the suggested amount of food down him without making him sick and most days he did not feel well enough to go out. The doctor confirmed that all of these things are normal. In fact, she said his symptoms may get worse for another week. However, she promised that in three weeks, he will be a new man. We can hardly wait!
The doctor is fine with us returning to Winston-Salem but told Ernie to avoid crowds and sick people for another couple of weeks until his white cell count improves. We promised to tell the rental agent tomorrow if we are going to extend beyond Saturday. Ernie was too tired from our long day to make any decisions tonight.
After my appointment, Ernie saw his medical oncologist. This last week was very rough on him. His pain level was much higher than during his treatments, his mouth sores seemed to get worse, his voice got more hoarse (he can't speak above a whisper) and his skin actually got redder and more sunburned looking even though he was not exposed to any more radiation. We were not able to get the suggested amount of food down him without making him sick and most days he did not feel well enough to go out. The doctor confirmed that all of these things are normal. In fact, she said his symptoms may get worse for another week. However, she promised that in three weeks, he will be a new man. We can hardly wait!
The doctor is fine with us returning to Winston-Salem but told Ernie to avoid crowds and sick people for another couple of weeks until his white cell count improves. We promised to tell the rental agent tomorrow if we are going to extend beyond Saturday. Ernie was too tired from our long day to make any decisions tonight.
Thursday, November 10, 2011
Let the Healing Begin
Now that we have had a day of rest, we wanted to pause and again thank everyone in our incredible support system. Your emails, texts, calls and gifts of congratulations have lifted our spirits more than you will ever know.
Although the bell tolled, it dawned on us that the battle is just half over. Now we have to nurse Ernie back to health. As predicted, he had his worst days to-date yesterday and today. His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t. Even though the treatments stopped, the effects do not stop immediately.
By popular demand, I will continue to post weekly (or so) updates on his progress. For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:
1. Maintain Ernie's weight at 155 pounds. The feeding tube can not come out if he loses weight.
2. Eat at least 300 calories of solid food by mouth per day. This is the equivalent of 3-3.25 ounce snack cups of pudding. This is critical to maintaining his ability to swallow over the long-term.
3. Exercise daily to build up his strength. This means walking 2 miles or strength training with rubber bands. In addition, he must keep up his swallowing exercises.
4. Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.
When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly. We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him.
Although the bell tolled, it dawned on us that the battle is just half over. Now we have to nurse Ernie back to health. As predicted, he had his worst days to-date yesterday and today. His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t. Even though the treatments stopped, the effects do not stop immediately.
By popular demand, I will continue to post weekly (or so) updates on his progress. For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:
1. Maintain Ernie's weight at 155 pounds. The feeding tube can not come out if he loses weight.
2. Eat at least 300 calories of solid food by mouth per day. This is the equivalent of 3-3.25 ounce snack cups of pudding. This is critical to maintaining his ability to swallow over the long-term.
3. Exercise daily to build up his strength. This means walking 2 miles or strength training with rubber bands. In addition, he must keep up his swallowing exercises.
4. Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.
When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly. We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him.
Tuesday, November 8, 2011
Ernie Rings The Bell!
The day we have been waiting for finally arrived. Ernie marked the occasion of his final radiation treatment by ringing the bell outside of the treatment room (video clip below) as the nurses and other patients looked on. It is a great tradition, providing closure for Ernie and encouragement for those still undergoing treatment.
They also presented him with his radiation mask--a kind of trophy for his bravery.
After ringing the bell, we met with the Radiation Oncologist who gave us a schedule for tapering off all the medications and a briefing on when to expect the side effects of treatment to subside. Long story short, it can be 6 months to a year for complete recovery of saliva and taste buds but major improvement can happen before then. Ernie will see him again for a follow up in 6 weeks.
Finally, Ernie had his last chemotherapy. We thought he wouldn't have to be stuck again for a while, but the Oncology Nurse wants to check his blood again next week and give him more magnesium if needed.
We returned to the apartment to celebrate. We could not be more happy.
They also presented him with his radiation mask--a kind of trophy for his bravery.
After ringing the bell, we met with the Radiation Oncologist who gave us a schedule for tapering off all the medications and a briefing on when to expect the side effects of treatment to subside. Long story short, it can be 6 months to a year for complete recovery of saliva and taste buds but major improvement can happen before then. Ernie will see him again for a follow up in 6 weeks.
Finally, Ernie had his last chemotherapy. We thought he wouldn't have to be stuck again for a while, but the Oncology Nurse wants to check his blood again next week and give him more magnesium if needed.
We returned to the apartment to celebrate. We could not be more happy.
Monday, November 7, 2011
26 Down and 1 to Go
Ernie had his 26th radiation treatment today and his last blood draw for at least five weeks.
Tomorrow is the BIG day...
1. Last radiation treatment and ringing of the bell
2. Last time he has the scope put down his nose
3. Last chemo treatment
We will also get our schedule of follow up appointments and instructions on how to taper off the drugs. Can't wait. Tonight I need to refresh my memory on how to use the video function on my camera so I can capture the moment.
Tomorrow is the BIG day...
1. Last radiation treatment and ringing of the bell
2. Last time he has the scope put down his nose
3. Last chemo treatment
We will also get our schedule of follow up appointments and instructions on how to taper off the drugs. Can't wait. Tonight I need to refresh my memory on how to use the video function on my camera so I can capture the moment.
Saturday, November 5, 2011
Time Off
After radiation yesterday, we came backed to the apartment and crashed. Although Ernie is anxious to get the last two radiation treatments over and done with, we are both exhausted from the week: long hours at the hospital, up too late trying to get Ernie's food down and sleep interrupted by coughing and the need for pain meds. It was heavenly to sleep in this morning. We are resting up so that Ernie can finish strong on Tuesday.
Thursday, November 3, 2011
Down But Not Out
Ernie had his weekly visit with the Radiation Oncologist today. He scoped Ernie and showed me areas in his throat that are already starting to heal and said that many more areas like this will emerge in the next two weeks. The swelling in his throat should also start to moderate. All of his vitals looked good (normal temperature!) except for his weight. He put on about 5 pounds pre-radiation as we were warned that it would be difficult to eat. He was doing a good job of maintaining that weight until this week. He was down 4 pounds versus last week. Oops.
With so much time spent at the hospital, it has been hard to get all the cans of food and cups of water down him. Food takes 4 hours and water another hour. And, it is very uncomfortable for the patient if you give it all at once. Imagine how you would feel if you ate all of your calories at one sitting. So, I have to space it out.
Last night I resorted to feeding him while he slept, which is OK as he has to sleep upright. Even then, I didn't manage to get all of the calories in him. Needless to say, we got a strong reminder from the nurse to pay more attention to nutrition. She also encouraged Ernie to keep swallowing soft food as much as possible--the exercises will pay dividends but there is no substitute for the real thing--and to get some exercise.
This afternoon was beautiful so, following orders, we went for a walk. After about a quarter mile, Ernie was tuckered out. He told me "this radiation is kicking my butt." We resolved to try to walk a little further everyday once he completes his treatments. Won't be long now: 3 radiations and one chemo to go.
With so much time spent at the hospital, it has been hard to get all the cans of food and cups of water down him. Food takes 4 hours and water another hour. And, it is very uncomfortable for the patient if you give it all at once. Imagine how you would feel if you ate all of your calories at one sitting. So, I have to space it out.
Last night I resorted to feeding him while he slept, which is OK as he has to sleep upright. Even then, I didn't manage to get all of the calories in him. Needless to say, we got a strong reminder from the nurse to pay more attention to nutrition. She also encouraged Ernie to keep swallowing soft food as much as possible--the exercises will pay dividends but there is no substitute for the real thing--and to get some exercise.
This afternoon was beautiful so, following orders, we went for a walk. After about a quarter mile, Ernie was tuckered out. He told me "this radiation is kicking my butt." We resolved to try to walk a little further everyday once he completes his treatments. Won't be long now: 3 radiations and one chemo to go.
Wednesday, November 2, 2011
Change of Plans
When we saw the Medical Oncologist yesterday, she asked us to consider staying in Baltimore for an extra week in case Ernie needs help with pain management. In her experience with the clinical trial, the first week after treatments are completed is typically the most difficult. So today we extended our lease until November 19. Given all of the surprises we've had in the last 7 days, it seems prudent. We are disappointed but we will still be home for Thanksgiving and will feel more secure being close to the doctors.
The pain is wearing Ernie out. The mysterious fever has disappeared so we are gradually adding back the Oxycontin but not fast enough to eliminate the pain completely. Only 4 more radiation treatments and one more chemo--the fact that we can count these on one hand propels us on.
The pain is wearing Ernie out. The mysterious fever has disappeared so we are gradually adding back the Oxycontin but not fast enough to eliminate the pain completely. Only 4 more radiation treatments and one more chemo--the fact that we can count these on one hand propels us on.
Tuesday, November 1, 2011
Fever Mystery Continues
The chest CT confirmed that Ernie's lungs are clear, once again ruling out aspiration pneumonia as the cause of the fever. The two remaining theories are a drug induced fever from drugs that effect the central nervous system (Oxycontin and others), or a sinus infection. The Oncologist went over his medications today and eliminated 3 antibiotics. She also reduced the dosage of another drug that can depress the central nervous system. Finally, they are testing him for a sinus infection. In the meantime, I am to be on alert at 6 PM to administer Tylenol if his temp hits 103.
The oxycodone alone is not enough to control the pain. Even a small sip of water puts Ernie at a 10 on the pain scale. So, the doctor is adding back a low dose of Oxycontin. If the Oxycontin turns out to be the source of the fever, he may have to be transferred to in-patient status for pain management for the last week. I think the pain will have to hit 20 on a 10 point scale before Ernie will consent to that.
The oxycodone alone is not enough to control the pain. Even a small sip of water puts Ernie at a 10 on the pain scale. So, the doctor is adding back a low dose of Oxycontin. If the Oxycontin turns out to be the source of the fever, he may have to be transferred to in-patient status for pain management for the last week. I think the pain will have to hit 20 on a 10 point scale before Ernie will consent to that.
Monday, October 31, 2011
The Case of the Recurring Fever
Ernie felt fairly good this weekend with the exception of a high (104 degree) fever that occurred at around 6 PM each night. The fever was scary enough but it was accompanied by confusion and slurred speech. In hindsight, it seems likely that the "overdose" was not an overdose at all but one of these fever/delusion episodes. Each night the fever peaked at about 104 and then dropped to 102 around bedtime. By morning his temp would be normal.
Last night Ernie was particularly bad and I called the emergency hotline (again). The on-call doc said that either the oxycontin or the infection in his mouth could be the cause. Since his temp did not stay at 104 for long, I was to check with the Oncologist this AM, which I did.
The Medical Oncologist still suspects aspiration pneumonia and is afraid that the chest x-rays are not picking up the problems. So she persuaded the insurance company to approve a chest CT for tomorrow morning. We also had to temporarily discontinue the Oxycontin so they can determine if Ernie still has his 6 PM symptoms (he did). He will definitely get his radiation tomorrow but the nurse that called did not say anything about the chemo. Fingers crossed that his chest is clear and he can finish his last two chemos as well as the radiation treatments on schedule.
Last night Ernie was particularly bad and I called the emergency hotline (again). The on-call doc said that either the oxycontin or the infection in his mouth could be the cause. Since his temp did not stay at 104 for long, I was to check with the Oncologist this AM, which I did.
The Medical Oncologist still suspects aspiration pneumonia and is afraid that the chest x-rays are not picking up the problems. So she persuaded the insurance company to approve a chest CT for tomorrow morning. We also had to temporarily discontinue the Oxycontin so they can determine if Ernie still has his 6 PM symptoms (he did). He will definitely get his radiation tomorrow but the nurse that called did not say anything about the chemo. Fingers crossed that his chest is clear and he can finish his last two chemos as well as the radiation treatments on schedule.
Sunday, October 30, 2011
A Tough PIll to Swallow
The challenge du jour yesterday was pills. Ernie's throat is so swollen that he can no longer choke down some of his large pills. The oncology nurse told us that there are generally three options: see if the pills are available in liquid form, or see if they can be crushed or dissolved. With the help of drugs.com and the CVS pharmacy, we found solutions for the two most troublesome pills. He has so many that it still takes him as long to take his pills as it does for me to eat a complete meal.
Thank goodness Jim and Charley arrived Thursday PM for their monthly visit. Other going to Johns Hopkins, the activities of daily living are consuming most of our waking hours. We would probably go stir crazy without some social interaction.
Thank goodness Jim and Charley arrived Thursday PM for their monthly visit. Other going to Johns Hopkins, the activities of daily living are consuming most of our waking hours. We would probably go stir crazy without some social interaction.
Friday, October 28, 2011
Oops, We Did It Again
Another day, another trip to the ER, this time for a drug overdose. Somehow Ernie and I got our wires crossed and he ended up taking a lot more Oxycontin than he should have. My first clue that something was wrong was when he woke up from his nap in a sort of drunken stupor. After conferring with the Johns Hopkins hot line, we decided to go to the ER and get the antidote. However, once we got there they were not impressed with his condition, having seen much worse and advised against giving the antidote. They felt it would do more harm than good.. However, based on Ernie's noisy breathing, they insisted on repeating the tests for pneumonia. Once again, all of the tests were negative--thank goodness. We got home at midnight after only 4 hours--a new land speed record. I am now officially in charge of administering all meds.
This AM, Ernie finished his 20th treatment and got his weekly evaluation from the Radiology Oncologist. The doctor continued to reinforce how well Ernie is responding to treatment but, like our nurses, is concerned about aspiration pneumonia. From now on, Ernie has to sleep sitting up and I have to take his temperature twice a day at the same time and report any spikes to the doctor immediately. Keep your fingers crossed for us--we are so close to a successful finish.
This AM, Ernie finished his 20th treatment and got his weekly evaluation from the Radiology Oncologist. The doctor continued to reinforce how well Ernie is responding to treatment but, like our nurses, is concerned about aspiration pneumonia. From now on, Ernie has to sleep sitting up and I have to take his temperature twice a day at the same time and report any spikes to the doctor immediately. Keep your fingers crossed for us--we are so close to a successful finish.
Thursday, October 27, 2011
Soldiering On
The antibiotics are kicking in and Ernie's temp is hovering at about 101. He is on both Oxycontin and oxycodene now for pain and seems to be feeling fairly good except when he eats. No amount of pain killers can mask the pain in his throat and mouth. He is still trying to take as much food and drink by mouth as he can. Eating is almost a full time job as he often has to rest for a while and let the mouth pain subside before he can finish even something as small as a cup of pudding. He is one tough and determined guy. We are starting to see the light at the end of the tunnel.
Wednesday, October 26, 2011
67%
Ernie now has 18 treatments out of the way and only 9 more to go! It is great to be in the single digits. We did have a bit of a scare this AM (just in time for Halloween) but, luckily, it was nothing that will interfere with his remaining radiation.
Ernie was breathing hard and was shaking during the night so I took his temp when he got up: 102.2! It dropped to 101.2 before we caught the bus so we decided to do the radiation treatment and then have a nurse check his temp. I was hoping that my $5.99 CVS thermometer was on the fritz. This time his temperature was 102.9.
Everyone went into "hope for the best but plan for the worst' mode. They immediately started IV fluids and scheduled a chest x-ray to determine if he had pneumonia. In the meantime, we went for the previously scheduled swallowing study, which confirmed that he is, indeed, aspirating when he drinks water. Since aspiration can cause pneumonia, this made the chest x-ray even more important.
Thankfully, there was no sign of pneumonia. Even better, the swallowing doctor cleared him to take liquids by mouth again, provided he swallows in a specific way that she taught him to prevent aspiration.
Ruling out pneumonia left the mouth sores as the likely cause of infection. Of course, there is a pill for that too. Ernie's meds are now so complicated that he has me check behind him after he fills the box. However, this part won't last long. Perhaps we will have a pill box smashing party at some point to celebrate his freedom from the meds.
Ernie was breathing hard and was shaking during the night so I took his temp when he got up: 102.2! It dropped to 101.2 before we caught the bus so we decided to do the radiation treatment and then have a nurse check his temp. I was hoping that my $5.99 CVS thermometer was on the fritz. This time his temperature was 102.9.
Everyone went into "hope for the best but plan for the worst' mode. They immediately started IV fluids and scheduled a chest x-ray to determine if he had pneumonia. In the meantime, we went for the previously scheduled swallowing study, which confirmed that he is, indeed, aspirating when he drinks water. Since aspiration can cause pneumonia, this made the chest x-ray even more important.
Thankfully, there was no sign of pneumonia. Even better, the swallowing doctor cleared him to take liquids by mouth again, provided he swallows in a specific way that she taught him to prevent aspiration.
Ruling out pneumonia left the mouth sores as the likely cause of infection. Of course, there is a pill for that too. Ernie's meds are now so complicated that he has me check behind him after he fills the box. However, this part won't last long. Perhaps we will have a pill box smashing party at some point to celebrate his freedom from the meds.
Tuesday, October 25, 2011
The no liquid diet
We thought Ernie was going to be on a liquid diet. But, today Ernie's nurses decided he should not take any liquids by mouth until he has his swallowing evaluation tomorrow. He can still take his pills with pudding but can consume nothing thinner.
Thank goodness we had started using the feeding tube. We are up to 3 cans per day--it takes 7 cans to provide all of his daily calories. We have to "titrate up" by one can per day, which means that he will be short of calories for a few days. We are allowed to put Gatorade in the tube to hydrate Ernie and give him some extra nutrition and calories. We are hoping the nurses are erring on the side of caution and that Ernie will be cleared to return to his Ensure and Instant Breakfast. He has done such a good job of maintaining his weight so I hate to see him lose ground now.
Thank goodness we had started using the feeding tube. We are up to 3 cans per day--it takes 7 cans to provide all of his daily calories. We have to "titrate up" by one can per day, which means that he will be short of calories for a few days. We are allowed to put Gatorade in the tube to hydrate Ernie and give him some extra nutrition and calories. We are hoping the nurses are erring on the side of caution and that Ernie will be cleared to return to his Ensure and Instant Breakfast. He has done such a good job of maintaining his weight so I hate to see him lose ground now.
Monday, October 24, 2011
One step forward and one step back
Nurse Skaar gave Rose a clean bill of health this morning and released her from quarantine. Ernie is still under observation.
After radiation, we stopped to see the radiation oncologist's nurse. Ernie has been choking after he drinks water, and the literature says we are to contact the doctor or nurse when this happens. The verdict: We see the swallowing specialist on Wednesday and she will check to see if he is aspirating (putting the liquid in his lungs instead of his stomach). This is a concern as it can lead to pneumonia.
We also asked about the swelling in his throat. This morning he had to resort to pudding to get his pills down. We are to talk to the doctor about his on Thursday. Some pills can be dissolved or come in liquid form but not all.
Ernie tends to feel better in the afternoon, so we are trying to get out and walk then. Studies show that cancer patients that walk during treatment recover faster. This plus the lovely sunny days have helped motivate us to get out. Let's hope that this weather lasts a few more weeks.
After radiation, we stopped to see the radiation oncologist's nurse. Ernie has been choking after he drinks water, and the literature says we are to contact the doctor or nurse when this happens. The verdict: We see the swallowing specialist on Wednesday and she will check to see if he is aspirating (putting the liquid in his lungs instead of his stomach). This is a concern as it can lead to pneumonia.
We also asked about the swelling in his throat. This morning he had to resort to pudding to get his pills down. We are to talk to the doctor about his on Thursday. Some pills can be dissolved or come in liquid form but not all.
Ernie tends to feel better in the afternoon, so we are trying to get out and walk then. Studies show that cancer patients that walk during treatment recover faster. This plus the lovely sunny days have helped motivate us to get out. Let's hope that this weather lasts a few more weeks.
Sunday, October 23, 2011
News from Nurse Skaar's Infirmary
I currently have two patients in my care now: Ernie and Rose. Rose had to go back to the vet on Friday as she had blood in her urine. After many (expensive) tests, they found bacteria and crystals in her bladder. She is now on antibiotics for the infection, meds for the pain and a special urinary tract diet to make sure this goes away and does not come back. Unfortunately, we've had to quarantine her as she can't be far from the litter box when nature calls, which was about every 5 minutes. We let her out for a bit today so she could lay in her sun puddle. Hopefully she will be back to normal before our company arrives on Thursday.
Ernie continues to develop new and painful side effects. His voice is now incredibly hoarse and it is difficult for him to talk above a whisper. Like the other side effects, his voice may remain hoarse for up to two months after the last treatment. His throat is also more swollen, presenting a real challenge when it comes to taking pills let alone swallowing food. We gave up on real food after dinner last night. We are now down to pudding, yogurt, instant breakfast and Ensure. This means that we must use the feeding tube to deliver the calories and nutrients he can't take by mouth. After a few fits and starts this morning, we were successful in using the tube on our own. Tomorrow we add a second feeding and then on Tuesday, he can use the tube as many feedings as needed.
So far he doesn't appear to have lost weight. The docs stress that patients that maintain their weight are less fatigued and recover faster--a good incentive to keep up with the calories.
Ernie continues to develop new and painful side effects. His voice is now incredibly hoarse and it is difficult for him to talk above a whisper. Like the other side effects, his voice may remain hoarse for up to two months after the last treatment. His throat is also more swollen, presenting a real challenge when it comes to taking pills let alone swallowing food. We gave up on real food after dinner last night. We are now down to pudding, yogurt, instant breakfast and Ensure. This means that we must use the feeding tube to deliver the calories and nutrients he can't take by mouth. After a few fits and starts this morning, we were successful in using the tube on our own. Tomorrow we add a second feeding and then on Tuesday, he can use the tube as many feedings as needed.
So far he doesn't appear to have lost weight. The docs stress that patients that maintain their weight are less fatigued and recover faster--a good incentive to keep up with the calories.
Saturday, October 22, 2011
Marking Time
After approximately 139 days, 96 loads of laundry, 75 dishwasher runs, and 40 trips to the hospital, we are literally counting the days until we return home (21!). We are getting help with the move from the Logan-Stuarts and the Gehrs. Both couples volunteered to come and haul a car load of our stuff back to Winston-Salem. I don't feel competent to handle a trailer and Ernie is not allowed to drive given all of the Oxycontin he has in his system.
The Logan-Stuarts will come Thursday, and spend the weekend--a 13 hour round trip drive. The Gehrs are batting clean-up, coming the night before our move and caravaning with us back to Winston-Salem. This will be a 20 hour round trip drive for them.
We continue to be astounded and grateful for all of the support we've received from friends and relatives in California, New York, Minnesota, Michigan, Texas, Georgia, Indiana, Ohio, North Carolina, Canada and London. We would not be to this point without all of the calls, texts, emails, cards, care packages and visits. "Thank you" does not seem sufficient for all that you've done.
The Logan-Stuarts will come Thursday, and spend the weekend--a 13 hour round trip drive. The Gehrs are batting clean-up, coming the night before our move and caravaning with us back to Winston-Salem. This will be a 20 hour round trip drive for them.
We continue to be astounded and grateful for all of the support we've received from friends and relatives in California, New York, Minnesota, Michigan, Texas, Georgia, Indiana, Ohio, North Carolina, Canada and London. We would not be to this point without all of the calls, texts, emails, cards, care packages and visits. "Thank you" does not seem sufficient for all that you've done.
Thursday, October 20, 2011
52%
Today Ernie crossed the halfway mark with his radiation treatments! The Radiation Oncologist scoped him after the radiation and saw absolutely no sign of cancer. However, he reminded us that we need to finish the treatments anyway...it is our insurance policy to prevent any recurrence.
The stress of the move finally got to Rose, who ended up at the vet with an inflammation of her bladder. She is supposed to be on a special urinary tract food but her parents have been giving her too many treats to assuage their guilt at moving her. Starting now, she is on a strict food regime again. Hopefully this will get us through the next few weeks until we can get her back home.
We have been quizzing the various doctors on how soon after treatment we can leave Baltimore. It seems no one can think of any reason we have to stay beyond the last treatment. So, right now we are planning November 12 (a Saturday) as our move date. YIPPEE
The stress of the move finally got to Rose, who ended up at the vet with an inflammation of her bladder. She is supposed to be on a special urinary tract food but her parents have been giving her too many treats to assuage their guilt at moving her. Starting now, she is on a strict food regime again. Hopefully this will get us through the next few weeks until we can get her back home.
We have been quizzing the various doctors on how soon after treatment we can leave Baltimore. It seems no one can think of any reason we have to stay beyond the last treatment. So, right now we are planning November 12 (a Saturday) as our move date. YIPPEE
Wednesday, October 19, 2011
Counting Calories
I have often counted calories in my life but always to limit them. Perversely, we are now counting calories to make sure Ernie gets enough.
Taking the Oxycontin every 4 hours has helped the pain tremendously but eating is still a challenge. Most things hurt Ernie's mouth and, in another perverse twist, the only thing he can taste is yogurt. (He actually hates yogurt but it is supposed to help discourage the thrush.) His mainstays now are instant breakfast, scrambled eggs, mashed potatoes and gravy, pudding, and Ruth Bonfiglio's famous mac and cheese (thanks Ruth!). We actually went out for breakfast this morning, a day brightener for both of us. Ernie had 2 plain scrambled eggs and a few bites of syrup with pancakes mixed in. I ate his bacon, a ham and cheese omelet, hash browns and some of his pancakes. I seem to have this urge to eat for both of us. Hope we don't end up looking like Jack Sprat and his wife!
Taking the Oxycontin every 4 hours has helped the pain tremendously but eating is still a challenge. Most things hurt Ernie's mouth and, in another perverse twist, the only thing he can taste is yogurt. (He actually hates yogurt but it is supposed to help discourage the thrush.) His mainstays now are instant breakfast, scrambled eggs, mashed potatoes and gravy, pudding, and Ruth Bonfiglio's famous mac and cheese (thanks Ruth!). We actually went out for breakfast this morning, a day brightener for both of us. Ernie had 2 plain scrambled eggs and a few bites of syrup with pancakes mixed in. I ate his bacon, a ham and cheese omelet, hash browns and some of his pancakes. I seem to have this urge to eat for both of us. Hope we don't end up looking like Jack Sprat and his wife!
Tuesday, October 18, 2011
Thrush but not the bird
Today we learned that one of the side effects of radiation is oral thrush--"painful white lesions" that appeared on Ernie's tongue. Just what he needed. Of course, there is a pill for that. Luckily Ernie has the super deluxe pill case with 4 different times slots for each of the 7 days of the week. I have lost track of his meds by now so both of us carry a list with us at all times. Keeping it up to date is the difficult part.
We also tried out the feeding tube under the watchful eye of the dietitian. A home health care company will deliver a 30 day supply of "osmolite" plus our very own pole hanger to hang the bags of "food". Eating solid food is fast becoming too painful. We are supposed to gradually introduce the osmolite as needed to make up the calories Ernie can't take by mouth. As long as he can keep swallowing liquids, his swallowing muscles will not deteriorate.
To add to the pill count, Ernie was instructed to take his Oxycontin every 4 hours for the pain. He has been resisting this for fear of becoming addicted but the folks at JH assured him that they would not let that happen. I am very happy as I hate seeing him suffer. He reminded me today that at our first meeting at Johns Hopkins, we were told "there will be pain, but in 6 months you will forget that you even had cancer." We are counting on it.
We also tried out the feeding tube under the watchful eye of the dietitian. A home health care company will deliver a 30 day supply of "osmolite" plus our very own pole hanger to hang the bags of "food". Eating solid food is fast becoming too painful. We are supposed to gradually introduce the osmolite as needed to make up the calories Ernie can't take by mouth. As long as he can keep swallowing liquids, his swallowing muscles will not deteriorate.
To add to the pill count, Ernie was instructed to take his Oxycontin every 4 hours for the pain. He has been resisting this for fear of becoming addicted but the folks at JH assured him that they would not let that happen. I am very happy as I hate seeing him suffer. He reminded me today that at our first meeting at Johns Hopkins, we were told "there will be pain, but in 6 months you will forget that you even had cancer." We are counting on it.
Monday, October 17, 2011
Routine
We are falling into our new routine. Each day, Monday through Friday, we leave the house at 7:10 AM to catch the bus to Johns Hopkins. On Monday, Ernie has his blood drawn in addition to the radiation so we are home by 10AM. On Tuesday, radiation treatments are supplemented by chemo. This is our longest day, arriving home by 2:30. Wednesday and Friday are radiation only so we get back to the apartment between 8:30 and 9:00 depending on if the radiation machine is running on time and how lucky we are in catching the bus. Each Thursday after radiation, Ernie sees the Radiation Oncologist so we get back between 10 and 11. On the weekends, we catch up on our sleep.
It is harder to pretend we are on vacation now. In addition to spending more time at the hospital, Ernie has all of his swallowing and jaw exercises to do, plus a twice daily skin care regime for the radiated area and all of the teeth cleaning to do the job that saliva used to do. Eating also takes longer as he must take small bites and chew his food well.
Despite all of this, he never complains. His courage and fortitude are unbelievable. If the shoe were on the other foot, he would be very sick of my whining by now.
It is harder to pretend we are on vacation now. In addition to spending more time at the hospital, Ernie has all of his swallowing and jaw exercises to do, plus a twice daily skin care regime for the radiated area and all of the teeth cleaning to do the job that saliva used to do. Eating also takes longer as he must take small bites and chew his food well.
Despite all of this, he never complains. His courage and fortitude are unbelievable. If the shoe were on the other foot, he would be very sick of my whining by now.
Saturday, October 15, 2011
Chugging Along
Ernie's pain is increasing daily. Today, eating oatmeal literally brought tears to his eyes. He told me he now understands the reason for the feeding tube and wants to learn more about using it next week. We thought we might have another 4 or 5 days before we reached this point...
Despite his fatigue and pain, Ernie insisted we take our daily excursion. We visited the B&O Railroad Museum (fascinating) and bought a combo ticket so that we could ride the train about 2 miles to tour the Mt Clare House.
The original property for the house was purchased by Charles Carroll, an Irish immigrant. His son, a barrister and one of the authors of the Charters of Rights for Maryland, built Mt Clare in 1756, naming it after his sister and his grandmother. About 3/4 of the contents of the house are original. It was well worth a visit.
I think our excursions are a great distraction but my challenge is obviously to get him enough to eat so that he maintains the strength to enjoy them as well as to conquer the treatments.
Despite his fatigue and pain, Ernie insisted we take our daily excursion. We visited the B&O Railroad Museum (fascinating) and bought a combo ticket so that we could ride the train about 2 miles to tour the Mt Clare House.
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| Ernie rides the train |
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| B&O Railroad Roundhouse |
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| Mt Clare Museum House |
The original property for the house was purchased by Charles Carroll, an Irish immigrant. His son, a barrister and one of the authors of the Charters of Rights for Maryland, built Mt Clare in 1756, naming it after his sister and his grandmother. About 3/4 of the contents of the house are original. It was well worth a visit.
I think our excursions are a great distraction but my challenge is obviously to get him enough to eat so that he maintains the strength to enjoy them as well as to conquer the treatments.
Friday, October 14, 2011
Rip Van Winkle Returns
As we were warned, the radiation is catching up with Ernie. He will suddenly become overwhelmed by fatigue and have to take a nap. His saliva is also falling him. He can no longer eat bread, crackers, cookies, etc. Even oatmeal was a struggle this AM. The dietitian provided recipes for high protein shakes and smoothies. I have a feeling the blender will shortly be our best friend.
Unfortunately, "fruitastic" fluoride did not live up to its name. It burned Ernie's mouth just like the spearmint. Even the Novocaine rinse didn't give him any relief. We left a message for the dentist; hope he has some other flavors in his arsenal.
Unfortunately, "fruitastic" fluoride did not live up to its name. It burned Ernie's mouth just like the spearmint. Even the Novocaine rinse didn't give him any relief. We left a message for the dentist; hope he has some other flavors in his arsenal.
Thursday, October 13, 2011
33%
As of today, Ernie is one-third done with his radiation! The Radiation Oncologist thought everything looked on track. For the most part, the radiation damage is isolated to the cancerous areas. The exception is the radiation in Ernie's mouth, which is reflecting off of his crowns and burning his tongue. So tomorrow, in addition to the mask and the mouth guard, Ernie has to pack his mouth with "dental rolls" to prevent more tongue sores. The nurse also prescribed a Novocaine rinse for Ernie to use prior to eating. It is getting very painful for him to eat due to his mouth sores. Since he can't taste anything now, this seems like a good solution.
Our guests--Dennis and Lesley--have provided a welcome change from the daily hospital visits. Because it has been rainy, we've mostly done indoor activities including a private tour of the print collection at the Baltimore Museum of Art, a trip to the American Visionary Museum where the work of self-taught artists is displayed, lunch at Attman's Deli on Corn Beef Row (YUM) and duckpin bowling at Mustang Alleys.
Tonight we will learn to make Struffoli at our Italian cooking class. We are all pleasantly exhausted from all of the fun we've had.
Our guests--Dennis and Lesley--have provided a welcome change from the daily hospital visits. Because it has been rainy, we've mostly done indoor activities including a private tour of the print collection at the Baltimore Museum of Art, a trip to the American Visionary Museum where the work of self-taught artists is displayed, lunch at Attman's Deli on Corn Beef Row (YUM) and duckpin bowling at Mustang Alleys.
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| Dennis prepares to roll |
Tonight we will learn to make Struffoli at our Italian cooking class. We are all pleasantly exhausted from all of the fun we've had.
Tuesday, October 11, 2011
Speared by Mint
Another day, another medical issue. It seems that the fluoride gel that Ernie must use on his teeth daily and leave in his mouth for 30 minutes is flavored with mint. Mint and mouth sores, it turns out, are not a good combination. The mint causes quite a strong burning sensation. The fluoride is by prescription only so while Ernie was getting his weekly chemo, I trekked to the pharmacy to explore other options. The only choice to the spearmint is "fruitastic." I certainly hope it is. The pharmacist had to order it so we will find out tomorrow.
Monday, October 10, 2011
Overachiever
Today Ernie finished day 6 of his radiation. We were told that he probably would not suffer any effects until treatment 11, but could start to be symptomatic by the 7th treatment. Being the overachiever that he is, Ernie is already getting the dreaded mouth sores. This means spicy foods, acidic foods and citrus flavors are off the list of menu options. The intersection of foods that he can taste and foods that he can tolerate is getting pretty small.
Tomorrow the Gehr's return for another visit. We are going to try one of the deli's on "Corn Beef Row." Perhaps we can find something there to tempt Ernie.
Tomorrow the Gehr's return for another visit. We are going to try one of the deli's on "Corn Beef Row." Perhaps we can find something there to tempt Ernie.
Sunday, October 9, 2011
Festivities
Both Ernie and I watched the clock this morning. At 11 AM--48 hours after his surgery--he could shower and we could clean the wound and flush the feeding tube. Neither of us aspire to the medical profession. But, when we looked around the apartment, there was no one else to attend to this so we took the plunge. It was not as bad as we thought.
With that out of the way, we decided to split our time between "Trawler Fest" and an Antique Festival. This meant foregoing the Columbus Day Parade, but something had to give.
It was a gorgeous Indian Summer Day--82 degrees and not a cloud in the sky. Just the kind of day we needed to recharge our batteries for the coming week.
With that out of the way, we decided to split our time between "Trawler Fest" and an Antique Festival. This meant foregoing the Columbus Day Parade, but something had to give.
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| Ernies' Favorite Trawler (52 feet!) |
Saturday, October 8, 2011
Need to Know Only
Today we are reminded that sometimes information is given on a need to know basis only. This tends to happens when the outcomes are not particularly pleasant.
Yesterday after the feeding tube surgery, the nurse inquired if we had pain killers at home. This should have been our first clue that this surgery was not quite the walk in the park that had been implied by the omission of certain gory details. As soon as Ernie could take liquids by mouth, the Oxycontin was pressed into action. It dulls the pain enough to make it tolerable.
The tube itself is very small but there is some kind of a disc that it fits into that we weren't aware of. It is about two inches in diameter, requiring a quite a good size hole in his abdomen. No wonder it hurts!
We are always surprised when we are blindsided by things like this. Generally, we ask tons of questions. We decided that sometimes our defense mechanisms kick in and we subconsciously fail to probe so we don't have to face the bad things right away. I think the good people at Johns Hopkins have learned not to tell you more than you want to know.
Tomorrow we non-medical types get to change the dressing and give the tube a test run. Wish us luck.
Yesterday after the feeding tube surgery, the nurse inquired if we had pain killers at home. This should have been our first clue that this surgery was not quite the walk in the park that had been implied by the omission of certain gory details. As soon as Ernie could take liquids by mouth, the Oxycontin was pressed into action. It dulls the pain enough to make it tolerable.
The tube itself is very small but there is some kind of a disc that it fits into that we weren't aware of. It is about two inches in diameter, requiring a quite a good size hole in his abdomen. No wonder it hurts!
We are always surprised when we are blindsided by things like this. Generally, we ask tons of questions. We decided that sometimes our defense mechanisms kick in and we subconsciously fail to probe so we don't have to face the bad things right away. I think the good people at Johns Hopkins have learned not to tell you more than you want to know.
Tomorrow we non-medical types get to change the dressing and give the tube a test run. Wish us luck.
Friday, October 7, 2011
Tales of the Macabre
It seemed somehow poetic that the doctors would choose the anniversary of Edgar Allen Poe's death in Baltimore as the day to put in Ernie's feeding tube.
As those of you who have visited us know, Poe died mysteriously after drinking at a tavern called The Horse You Came In On Saloon on October 7, 1849. The date is widely celebrated in Baltimore. Today, outside the Saloon, black cars, statues and waste cans emblazoned with Poe tributes appeared.
Poe made a name for himself writing about the macabre. Feeding tubes are also a bit...well, you get the picture.
Before the feeding tube surgery, we were warned that the placement of Ernie's organs might make it impossible to place the feeding tube the normal way. This happens in about 10% of people. (I always knew he was special). However, they decided to give it a try and were able to find space to inflate the balloon that holds the tube in place. After that, we had a macabre meeting with a nurse who taught us how to dress the wound and clean the tube. This is definitely not my forte, but I will do my best. Cleaning a feeding tube is nothing compared to what Ernie is going through.
As those of you who have visited us know, Poe died mysteriously after drinking at a tavern called The Horse You Came In On Saloon on October 7, 1849. The date is widely celebrated in Baltimore. Today, outside the Saloon, black cars, statues and waste cans emblazoned with Poe tributes appeared.
Poe made a name for himself writing about the macabre. Feeding tubes are also a bit...well, you get the picture.
Before the feeding tube surgery, we were warned that the placement of Ernie's organs might make it impossible to place the feeding tube the normal way. This happens in about 10% of people. (I always knew he was special). However, they decided to give it a try and were able to find space to inflate the balloon that holds the tube in place. After that, we had a macabre meeting with a nurse who taught us how to dress the wound and clean the tube. This is definitely not my forte, but I will do my best. Cleaning a feeding tube is nothing compared to what Ernie is going through.
Thursday, October 6, 2011
Parched
Another radiation under our belt--only 23 to go! We are starting to recognize other patients now that we have the same time slot every day. The lady that has the time after Ernie got to "ring the bell" today--a ritual that is performed after your last treatment. As you can see, we are counting the days until Ernie can ring the bell.
On our way out of the clinic, we ran into Ernie's Radiation Oncologist, which was fortunate as Ernie's salivary glands are giving up the ghost. We knew this was going to happen but didn't think it would happen so fast. Without saliva, "everything tastes like cardboard" according to Ernie. The doctor gave him a prescription for a drug that is supposed to increase saliva production. In addition to cooking highly flavored foods, we are also adding sauces and gravies to our repertoire. The only silver lining is that Ernie no longer has to force himself to drink 70 ounces of water each day--now it appeals to him.
On our way out of the clinic, we ran into Ernie's Radiation Oncologist, which was fortunate as Ernie's salivary glands are giving up the ghost. We knew this was going to happen but didn't think it would happen so fast. Without saliva, "everything tastes like cardboard" according to Ernie. The doctor gave him a prescription for a drug that is supposed to increase saliva production. In addition to cooking highly flavored foods, we are also adding sauces and gravies to our repertoire. The only silver lining is that Ernie no longer has to force himself to drink 70 ounces of water each day--now it appeals to him.
Wednesday, October 5, 2011
Moving Right Along
We left the apartment at 7:15 this morning for radiation and were back by 9:30. They were running late today--we forgot to check the machine's website or we would have known that--so hopefully we can shave some time off future visits, at least on Monday, Wednesday and Friday.
Our next challenge is becoming food. Ernie's taste buds were already desensitized by the chemo but the radiation is now taking its toll as well. Almost nothing has any flavor anymore. We did an experiment at breakfast this morning to see what he could taste and found three things: blueberry almond oatmeal with flax (thank you Kathy Fackelman!), rye bread (thank you Dennis Gehr) and onions, which I put in his eggs. The common thread seems to be strong flavors. We are making a foray to the big supermarket this afternoon to stock up on Ensure and Instant Breakfast, which we are told will become staples in Ernie's diet, and to look for more foods that might provide some flavor to his food.
Our next challenge is becoming food. Ernie's taste buds were already desensitized by the chemo but the radiation is now taking its toll as well. Almost nothing has any flavor anymore. We did an experiment at breakfast this morning to see what he could taste and found three things: blueberry almond oatmeal with flax (thank you Kathy Fackelman!), rye bread (thank you Dennis Gehr) and onions, which I put in his eggs. The common thread seems to be strong flavors. We are making a foray to the big supermarket this afternoon to stock up on Ensure and Instant Breakfast, which we are told will become staples in Ernie's diet, and to look for more foods that might provide some flavor to his food.
Tuesday, October 4, 2011
Going the Distance
We had hoped that our daily trips to the hospital for radiation would be offset by shorter chemo sessions. So far, it seems we were mistaken.
We arrived at the hospital at 7:30 AM today and got home at 5:30 PM. In between...
1. We learned the correct techniques for the swallowing and jaw exercises. Ernie must do these 3X to 5X per day. The speech pathologist compared the pre-radiation jaw muscles to raw meat (soft & pliable) and the post-radiation muscles to cooked meat (tough and rubbery). Right now he can open his mouth fully, but if he doesn't do the exercises, his jaw could be cooked closed and the process can not be reversed. Not a very appetizing analogy, but quite effective. He did the exercises as soon as we got home.
2. Ernie had his 2nd of 27 radiation treatments. Only 25 to go!
3. We met with the Radiologist Oncologist. He scoped Ernie--which he will do once per week. (Ernie was thrilled to learn this.) Although he found nothing concerning yet, he prescribed some nerve blocking pain killers that he wants Ernie to start taking to block the pain before it starts. The pain comes from mouth sores and burned skin in the throat. He and his nurse both said that these usually start to manifest themselves around the 11 treatment mark.
4. Ernie had his weekly chemo treatment. As usual, we had to wait 3 hours for a spot to open up. The nurses said they will try to get him in faster in the coming weeks. Unfortunately, the nurses forgot and gave him the full dose of Benadryl (he prefers a half dose) so he is struggling to stay awake right now.
Normally we will see the Radiologist Oncologist on Thursday so we hope that next Tuesday will be a shorter day. Right now we are psyching ourselves up for our 8 AM radiation treatment tomorrow.
We arrived at the hospital at 7:30 AM today and got home at 5:30 PM. In between...
1. We learned the correct techniques for the swallowing and jaw exercises. Ernie must do these 3X to 5X per day. The speech pathologist compared the pre-radiation jaw muscles to raw meat (soft & pliable) and the post-radiation muscles to cooked meat (tough and rubbery). Right now he can open his mouth fully, but if he doesn't do the exercises, his jaw could be cooked closed and the process can not be reversed. Not a very appetizing analogy, but quite effective. He did the exercises as soon as we got home.
2. Ernie had his 2nd of 27 radiation treatments. Only 25 to go!
3. We met with the Radiologist Oncologist. He scoped Ernie--which he will do once per week. (Ernie was thrilled to learn this.) Although he found nothing concerning yet, he prescribed some nerve blocking pain killers that he wants Ernie to start taking to block the pain before it starts. The pain comes from mouth sores and burned skin in the throat. He and his nurse both said that these usually start to manifest themselves around the 11 treatment mark.
4. Ernie had his weekly chemo treatment. As usual, we had to wait 3 hours for a spot to open up. The nurses said they will try to get him in faster in the coming weeks. Unfortunately, the nurses forgot and gave him the full dose of Benadryl (he prefers a half dose) so he is struggling to stay awake right now.
Normally we will see the Radiologist Oncologist on Thursday so we hope that next Tuesday will be a shorter day. Right now we are psyching ourselves up for our 8 AM radiation treatment tomorrow.
Monday, October 3, 2011
One down and 26 to go
Today was a nervous day. The chemo room is a rather somber place, but it seems positively cheery compared to the radiation waiting room. People in radiation "look bad" according to Ernie. We know this is going to be the most taxing part of the treatment but seeing the other patients was a grim reminder.
Of course, Ernie came out of the treatment room as strong and lively as when he went in. This was no small feat. For this session, he had to be strapped to the table for 30 minutes--about twice as long as he will be in the future--as they had to line up the radiation and then produce films for the doctor to check. Once the doctor was happy with that the beams were going to hit the right spots, they went "live" and gave him his first treatment. The mask is so tight that he still had the marks on his face an hour later. If you are interested in what the mask and procedure look like, follow this link and watch this 2 minute video.
http://www.youtube.com/watch?v=W_ClcBF6a0I&feature=related
Ernie was rewarded for his bravery with the EXACT time he was hoping for! His daily radiation will be at 8 AM--not too early but early nought that he still has most of the day free. On Tuesday's, he will have chemo in addition to radiation and on Thursday he sees the radiology oncologist so those days will be a bit longer.
However, they have given him plenty to do with his "free" time. He has to brush and floss his teeth four times per day. Two of these brushings will be followed by a 10 minute fluoride treatment. He also has to gargle 4 to 6 times per day, do jaw and swallowing exercises three times per day, and wash and moisturize his neck and face twice per day. Whew! Hopefully all of this activity will make the time fly by.
Of course, Ernie came out of the treatment room as strong and lively as when he went in. This was no small feat. For this session, he had to be strapped to the table for 30 minutes--about twice as long as he will be in the future--as they had to line up the radiation and then produce films for the doctor to check. Once the doctor was happy with that the beams were going to hit the right spots, they went "live" and gave him his first treatment. The mask is so tight that he still had the marks on his face an hour later. If you are interested in what the mask and procedure look like, follow this link and watch this 2 minute video.
http://www.youtube.com/watch?v=W_ClcBF6a0I&feature=related
Ernie was rewarded for his bravery with the EXACT time he was hoping for! His daily radiation will be at 8 AM--not too early but early nought that he still has most of the day free. On Tuesday's, he will have chemo in addition to radiation and on Thursday he sees the radiology oncologist so those days will be a bit longer.
However, they have given him plenty to do with his "free" time. He has to brush and floss his teeth four times per day. Two of these brushings will be followed by a 10 minute fluoride treatment. He also has to gargle 4 to 6 times per day, do jaw and swallowing exercises three times per day, and wash and moisturize his neck and face twice per day. Whew! Hopefully all of this activity will make the time fly by.
Sunday, October 2, 2011
Waiting to Exhale
We had a great weekend with the Saunders and Suttons--friends from Winston-Salem. We toured the the Barque Eagle--a Coast Guard cutter and one of America's Tall Ships (see photo below). We also visited the Cone Sister's collection of Impressionist Art at the Baltimore Museum of Art. These activities were interspersed with LOTS of eating (seafood, crab cakes and Italian food in Little Italy). Ernie and I also feasted on Dewey's sugar cake--a Winston-Salem delicacy smuggled across the Maryland line by our friends--which we enjoyed immensely. I think we each gained 10 pounds but had lots of fun doing it.
Tonight we are watching our adopted team--the Ravens--beat the hated Jets. Several friends emailed that they saw our apartment building on TV when the networks were panning the Baltimore skyline. Lots of celebs are in town for the game. Yesterday, we had lunch next to Frank Robinson!
Tomorrow morning we are free. Then tomorrow afternoon, the radiation treatments begin. Ernie is naturally nervous but I know that he will persevere just as he did with the chemo.
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| Cindy , Cyndi, Pam, Ernie, Rob and Jack |
Tonight we are watching our adopted team--the Ravens--beat the hated Jets. Several friends emailed that they saw our apartment building on TV when the networks were panning the Baltimore skyline. Lots of celebs are in town for the game. Yesterday, we had lunch next to Frank Robinson!
Tomorrow morning we are free. Then tomorrow afternoon, the radiation treatments begin. Ernie is naturally nervous but I know that he will persevere just as he did with the chemo.
Friday, September 30, 2011
Hospitals R Us
We had an uneventful flight to Minneapolis and immediately launched into helping the folks tackle their move. After 20 years in their townhouse, they've decided to move to an active seniors complex. We were deep into the closets, etc when the cardiologist decided that Dad should be admitted into the hospital. Of course, it was Ernie who took him to his appointment. Per his doctor's orders, Ernie was wearing his hospital mask when he and dad arrived at the admitting desk--confusing the daylights out of the hospital staff who couldn't figure out who to admit! After some extra-strength diuretics to rid him of fluids, Dad was released today and we returned home to Baltimore.
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| Mom and Dad with Dad's Corvette |
Sunday, September 25, 2011
Break
We had a delightful weekend with Doug and Ruth Shouse from Winston-Salem. (Neglected to get their picture--note to self to follow up with them.) The weather was great and we were able to eat outside at our favorite harbor-side restaurant.
Tomorrow we leave for Minnesota, returning on Friday in time to host the Suttons and Saunders from Winston-Salem. They leave on October 2 and on October 3, it is back to the work of curing cancer. The doctors told Ernie to make the most of his break so we are keeping our calendar jam-packed. It is a welcome respite from the last 9 weeks that will prepare us for the final 6 week push to the finish line.
Tomorrow we leave for Minnesota, returning on Friday in time to host the Suttons and Saunders from Winston-Salem. They leave on October 2 and on October 3, it is back to the work of curing cancer. The doctors told Ernie to make the most of his break so we are keeping our calendar jam-packed. It is a welcome respite from the last 9 weeks that will prepare us for the final 6 week push to the finish line.
Thursday, September 22, 2011
Doctor's Orders
Ernie decided to follow the standard protocol and get the feeding tube. The doctors kindly agreed to wait until after we return from our trip to Minnesota next week to do the surgery.
Even though the staff wants you to have the tube, they actually discourage you from using it. If you keep swallowing during radiation, you are less likely to lose any long-term swallowing function. The tube is there to supplement your nutrition if you start to lose too much weight. Maintaining normal weight is necessary not only to remain healthy, but also to insure that the size of your neck doesn't change dramatically after they make the mask and line up the radiation beams.
If you don't use the tube, they remove it a week or two after radiation. If you do use it--and we gather most people do to some extent--then they wait a week or two after the last use to remove it. Seems like the procedures will never end but, given our success rate so far, we are not complaining.
Even though the staff wants you to have the tube, they actually discourage you from using it. If you keep swallowing during radiation, you are less likely to lose any long-term swallowing function. The tube is there to supplement your nutrition if you start to lose too much weight. Maintaining normal weight is necessary not only to remain healthy, but also to insure that the size of your neck doesn't change dramatically after they make the mask and line up the radiation beams.
If you don't use the tube, they remove it a week or two after radiation. If you do use it--and we gather most people do to some extent--then they wait a week or two after the last use to remove it. Seems like the procedures will never end but, given our success rate so far, we are not complaining.
Tuesday, September 20, 2011
You Can't Always Get What You Want...
...but in our case, we did! We were resolved to accept whatever happened but the doctors agree that 5 1/2 half weeks of radiation will be sufficient to cure the cancer in Ernie's throat as well as in his lymph nodes!!!! We didn't realize until today that they could select different durations for different tumors.
At least 95% and perhaps all of the tumor in his throat is gone. There is something small remaining on the left side but it could be scar tissue and not tumor. The doctors claim Ernie had a remarkable response to the treatment as his tumor was very large when he was diagnosed--it extended from his throat to his tonsils to his upper palate, which was very red. To have it "melt away" like and leave his throat looking so normal is what they hope for.
Even if they could determine that all of the tumor was gone, he would still need to undergo radiation to insure that it does not return--a concern for this type of cancer. So on October 3, Ernie will begin his new regime of radiation 5 days per week combined with chemotherapy (one drug only) 1 day per week. He also sees his radiologist for a consult one day per week. So three days a week we will be at the hospital for one hour and the other two days, two to three hours. We get to choose from the available time slots when Ernie goes for his first treatment.
Our last decision concerns whether or not to have a feeding tube inserted. This is standard protocol here but they are giving Ernie the chance to opt out based on his schleroderma. Schleroderma can cause the body to create excessive scar tissue in response to injury. We have to let them know by Thursday. Stay tuned.
At least 95% and perhaps all of the tumor in his throat is gone. There is something small remaining on the left side but it could be scar tissue and not tumor. The doctors claim Ernie had a remarkable response to the treatment as his tumor was very large when he was diagnosed--it extended from his throat to his tonsils to his upper palate, which was very red. To have it "melt away" like and leave his throat looking so normal is what they hope for.
Even if they could determine that all of the tumor was gone, he would still need to undergo radiation to insure that it does not return--a concern for this type of cancer. So on October 3, Ernie will begin his new regime of radiation 5 days per week combined with chemotherapy (one drug only) 1 day per week. He also sees his radiologist for a consult one day per week. So three days a week we will be at the hospital for one hour and the other two days, two to three hours. We get to choose from the available time slots when Ernie goes for his first treatment.
Our last decision concerns whether or not to have a feeding tube inserted. This is standard protocol here but they are giving Ernie the chance to opt out based on his schleroderma. Schleroderma can cause the body to create excessive scar tissue in response to injury. We have to let them know by Thursday. Stay tuned.
Monday, September 19, 2011
Pins and Needles
Pins and needles aptly describes our day today. We were at the hospital at 6:30 AM sharp for a "post chemo" MRI. The film from today will be compared with the "pre-chemo" film to see how the tumors have responded to the drugs. As part of the protocol, they must inject dye into your veins. Lucky Ernie.
Next came the "scope"--a long needle-like probe they stick down your nose to look at the tumor on TV. But wait, there's more.
The radiologist capped off the morning with a CT scan. This time they inserted an IV to deliver the contrast. This procedure was to insure that the radiation mask that was made pre-chemo is still accurate. We can't figure out why they just don't wait and make the mask when they need it. Maybe they are trying to toughen him up for things to come.
We are now on pins and needles waiting for the results of the MRI and the scope. The radiologist, surgeon and oncologist will review the film and then decide if Ernie is a candidate for the shorter course of lower dose radiation or if they think he should proceed with the standard of care. We have an appointment with the oncologist tomorrow morning and are hoping that they will give us their decision then. The surgeon liked the looks of the MRI but wasn't as happy when he looked through the scope so we are not sure what to expect. In the meantime, keep those thoughts and prayers coming.
Next came the "scope"--a long needle-like probe they stick down your nose to look at the tumor on TV. But wait, there's more.
The radiologist capped off the morning with a CT scan. This time they inserted an IV to deliver the contrast. This procedure was to insure that the radiation mask that was made pre-chemo is still accurate. We can't figure out why they just don't wait and make the mask when they need it. Maybe they are trying to toughen him up for things to come.
We are now on pins and needles waiting for the results of the MRI and the scope. The radiologist, surgeon and oncologist will review the film and then decide if Ernie is a candidate for the shorter course of lower dose radiation or if they think he should proceed with the standard of care. We have an appointment with the oncologist tomorrow morning and are hoping that they will give us their decision then. The surgeon liked the looks of the MRI but wasn't as happy when he looked through the scope so we are not sure what to expect. In the meantime, keep those thoughts and prayers coming.
Friday, September 16, 2011
Attack of the Rotten Cold Virus
Our "end of chemo" celebration ended with a trip to the ER in the wee hours of Wednesday morning. What started as a sore throat at bedtime Tuesday morphed into a swollen throat by 1 AM Wednesday. This innocuous sounding symptom can be a sign of a severe allergic reaction that can totally constrict the airways, according to our handy symptom chart. Deciding to err on the side of caution, we called the emergency hotline number and were instructed to proceed to the ER where Ernie was given more Benadryl and kept until morning for observation.
The good news is that it was not an allergic reaction. The bad news--not enough white blood cells to fight off the common cold. As long as his temperature remains under 100.5, he can stay at home to recover. This is some small consolation. Since his immune system is shot, his days and nights are one long slumber.
Next Monday and Tuesday, he is scheduled for a follow-up MRI, a final calibration of his radiation mask and a "scoping" by the surgeon to see how much tumor remains in his throat. Of course, we do not want to miss these appointments. I just returned from the Whole Foods with ingredients for some chicken-based soup. Hope those old wives tales about its curative powers are true.
The good news is that it was not an allergic reaction. The bad news--not enough white blood cells to fight off the common cold. As long as his temperature remains under 100.5, he can stay at home to recover. This is some small consolation. Since his immune system is shot, his days and nights are one long slumber.
Next Monday and Tuesday, he is scheduled for a follow-up MRI, a final calibration of his radiation mask and a "scoping" by the surgeon to see how much tumor remains in his throat. Of course, we do not want to miss these appointments. I just returned from the Whole Foods with ingredients for some chicken-based soup. Hope those old wives tales about its curative powers are true.
Tuesday, September 13, 2011
Made the Cut!
It was a close call today. Ernie's neutrophil's (a type of white blood cell that is closely watched by the Oncologist) were 1520 today vs the cutoff of 1500. The nurse said they must have been looking for extra cells under the microscope. Anyway, his counts were good enough to get his last chemo!!!!! There are not enough exclamation points to express our joy at finishing "round 1". Jim and Charley are coming tonight for their monthly visit. We are going to celebrate by taking in an Orioles game tomorrow night among other things.
Ernie is definitely looking forward to his time off. When he first heard about the enforced break, he was disappointed that the treatment was getting stretched out. Now he is grateful for this time so he can regain some energy and restore his taste buds before the push to the finish line begins October 3.
Ernie is definitely looking forward to his time off. When he first heard about the enforced break, he was disappointed that the treatment was getting stretched out. Now he is grateful for this time so he can regain some energy and restore his taste buds before the push to the finish line begins October 3.
Saturday, September 10, 2011
Defenders Day Weekend
We have had our usual ups and downs since chemo on Tuesday. However, nothing can dampen our enthusiasm for next week's milestone.
We continue to distract ourselves by immersing ourselves in all that Baltimore has to offer. Yesterday marked the start of Defender's Day weekend in Baltimore. Defender's Day is officially September 12--the date in 1814 when Baltimore successfully turned back a British attack on Fort McHenry and inspired Francis Scott Key to write the Star Spangled Banner. We are watching, from our balcony, for the fireworks that will simulate the "bombs bursting in air" just as Baltimoreans 197 years ago watched to see which side would triumph "in the dawns early light."
It seems fitting with Washington and NYC on high alert for terrorist attacks, that we should stand proud and celebrate our ability to defend our liberty over those who would try to defeat us.
We continue to distract ourselves by immersing ourselves in all that Baltimore has to offer. Yesterday marked the start of Defender's Day weekend in Baltimore. Defender's Day is officially September 12--the date in 1814 when Baltimore successfully turned back a British attack on Fort McHenry and inspired Francis Scott Key to write the Star Spangled Banner. We are watching, from our balcony, for the fireworks that will simulate the "bombs bursting in air" just as Baltimoreans 197 years ago watched to see which side would triumph "in the dawns early light."
It seems fitting with Washington and NYC on high alert for terrorist attacks, that we should stand proud and celebrate our ability to defend our liberty over those who would try to defeat us.
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| Star Spangled Banner over Fort McHenry |
Tuesday, September 6, 2011
8 down and 1 to go!
We marked our 2 month anniversary as Baltimore residents with Ernie completing treatment 8 out of 9 of his chemotherapy. His white cell counts continue to look good so there is little doubt among the staff that he will complete #9 next week. They cut back on the Benadryl and fluids today, and Ernie says he is feeling better than he's felt in a week. On the way home, we were singing and dancing in the rain.
Monday, September 5, 2011
Grand (Prix) Weekend
Our great friends, Bill Whitlatch and Mary Gilbert, came to visit this weekend from Charlotte. It also happened to be the first, and maybe annual, running of the Baltimore Grand Prix. The 2.4 mile race route was along the Inner Harbor front--smack dab in the middle of downtown--and around Camden Yards. Road repairs and closures started a year ago and bleachers and barriers have been going up for the last month. It was highly controversial, with the Mayor staking her re-election on a successful event. From the crowds and noise the four of us experienced--and the fact that the ESPN announcers waxed poetic about the race and Baltimore--I would guess that there will be no real mayoral contest.
We made an effort to stay away from the crowds, focusing on the Star Spangled Banner Museum, Fort McHenry and the Aquarium. We also sampled as many of Baltimore's restaurants as we could.
Bill and Mary left this morning, giving Ernie time to rest up for his next chemo tomorrow. Usually by Monday he is ready to get started again, but both of us agree that tomorrow seems soon to have to go back. We wonder if he is experiencing some kind of cumulative effect or if nine weeks is just a long time to have to endure this assault.
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| Bill and Mary visit our apartment |
We made an effort to stay away from the crowds, focusing on the Star Spangled Banner Museum, Fort McHenry and the Aquarium. We also sampled as many of Baltimore's restaurants as we could.
Bill and Mary left this morning, giving Ernie time to rest up for his next chemo tomorrow. Usually by Monday he is ready to get started again, but both of us agree that tomorrow seems soon to have to go back. We wonder if he is experiencing some kind of cumulative effect or if nine weeks is just a long time to have to endure this assault.
Friday, September 2, 2011
Inside Information
Ernie is still fighting the effects of the last chemo. This means lots of rest and nothing that requires a lot of concentration. However, his spirits are excellent as he knows he is in the home stretch as far as chemo is concerned. Our thoughts our now turning to the radiation.
The week of September 19--that is the week after he finishes his last chemo--he will have all of his follow up appointments to gauge the size and locations of the tumors post treatment. The docs will then decide whether he is subjected to 5.5 weeks of lower dose radiation or 7 weeks of "normal" radiation. Then, we get a week off, which we will use to go to Minnesota. When we return, it will be time to start the five days per week of radiation.
Our wonderful oncology nurse introduced Ernie to another man--Peter Kaufman--who just completed the same clinical trial that Ernie is in. Peter, who happens to be an MD and, in the small world department, used to live in Winston Salem, was jubilant about his results. He and Ernie exchanged emails and Peter has been giving Ernie insight into what to expect during radiation as well as dos and don'ts. He has not sugar-coated the experience (told Ernie he would feel like crap after the first week or two) but still, it is very reassuring to talk to someone who has actually "been there and done that." We can now start to see the light at the end of the tunnel.
The week of September 19--that is the week after he finishes his last chemo--he will have all of his follow up appointments to gauge the size and locations of the tumors post treatment. The docs will then decide whether he is subjected to 5.5 weeks of lower dose radiation or 7 weeks of "normal" radiation. Then, we get a week off, which we will use to go to Minnesota. When we return, it will be time to start the five days per week of radiation.
Our wonderful oncology nurse introduced Ernie to another man--Peter Kaufman--who just completed the same clinical trial that Ernie is in. Peter, who happens to be an MD and, in the small world department, used to live in Winston Salem, was jubilant about his results. He and Ernie exchanged emails and Peter has been giving Ernie insight into what to expect during radiation as well as dos and don'ts. He has not sugar-coated the experience (told Ernie he would feel like crap after the first week or two) but still, it is very reassuring to talk to someone who has actually "been there and done that." We can now start to see the light at the end of the tunnel.
Wednesday, August 31, 2011
Pay to Play
This last chemo was harder on Ernie than the previous two--more fatigue, more nausea and more restlessness from the Benadryl. We are glad that he is done with the 'tough' ones.
Over the last seven weeks, we have developed a routine for the day. In the morning we read the paper, pay bills (medical bills consume an inordinate amount of time), clean and do laundry (keeping a germ-free environment is also time consuming). We also visit the Whole Foods to buy provisions for the day. After lunch, Ernie takes a short nap and then we head out on a sight-seeing excursion. This insures that we get out of the apartment and get our exercise as we usually walk at least part of the way.
Today we visited the Maryland Historical Society. As it is the 150th anniversary of the Civil War, they had a special exhibit on Maryland's role. We have been impressed with the number of famous Maryland citizens. Those that figure prominently in the Civil War include Frederick Douglass, Harriet Tubman, Roger Taney (Supreme Court Justice in the Dred Scott decision), John Wilkes Booth, Clara Barton, and our very own Johns Hopkins. It was a terrific exhibit--certainly worth a second look if any of you would like to join us.
Over the last seven weeks, we have developed a routine for the day. In the morning we read the paper, pay bills (medical bills consume an inordinate amount of time), clean and do laundry (keeping a germ-free environment is also time consuming). We also visit the Whole Foods to buy provisions for the day. After lunch, Ernie takes a short nap and then we head out on a sight-seeing excursion. This insures that we get out of the apartment and get our exercise as we usually walk at least part of the way.
Today we visited the Maryland Historical Society. As it is the 150th anniversary of the Civil War, they had a special exhibit on Maryland's role. We have been impressed with the number of famous Maryland citizens. Those that figure prominently in the Civil War include Frederick Douglass, Harriet Tubman, Roger Taney (Supreme Court Justice in the Dred Scott decision), John Wilkes Booth, Clara Barton, and our very own Johns Hopkins. It was a terrific exhibit--certainly worth a second look if any of you would like to join us.
Tuesday, August 30, 2011
Yippee!!
Ernie's white blood cell count bounced back this week--in fact all of his numbers looked good--and we are now awaiting the arrival of the chemo drugs. The Oncology Doc also examined his tumor and was obviously excited by the results. She could feel no evidence of any tumors on his lymph nodes and thought that the tumor in his throat was substantially smaller.
Based on the blood work and exam, the staff is starting to plan for the next phase. Right now it appears that radiation will start the first week in October. If Ernie qualifies for the shorter course of radiation, that still gives us a chance to be home by Thanksgiving.
One other positive piece of news--my new laptop arrived yesterday, just four hours after the old one expired. How's that for timing.
Based on the blood work and exam, the staff is starting to plan for the next phase. Right now it appears that radiation will start the first week in October. If Ernie qualifies for the shorter course of radiation, that still gives us a chance to be home by Thanksgiving.
One other positive piece of news--my new laptop arrived yesterday, just four hours after the old one expired. How's that for timing.
Monday, August 29, 2011
Waiting for Tomorrow
Today we are in "hurry up and wait" mode. Tomorrow Ernie should start his last chemo cycle. However, since his white cell count was borderline last week, we are nervous that he may not make the cutoff this week. Unfortunately, we won't know for two or three hours after they draw his blood whether or not he can proceed. We hate to lose a week but, according to the staff, there is nothing Ernie can do to improve his counts. Whatever will be, will be.
To pass the time while we are waiting, I usually answer the many great emails y'all have been sending. That will not be happening for a while. My computer died today so I will have to find another diversion. At least it was not a sudden death. There were an ample number of the "blue screen" occurrences alerting me to significant problems so I was able to get everything backed up and a new computer ordered before it gave up the ghost. My new laptop should be here by the weekend. In the meantime, please forgive the lack of response--it is a pain to write anything but a few sentences on my blackberry.
To pass the time while we are waiting, I usually answer the many great emails y'all have been sending. That will not be happening for a while. My computer died today so I will have to find another diversion. At least it was not a sudden death. There were an ample number of the "blue screen" occurrences alerting me to significant problems so I was able to get everything backed up and a new computer ordered before it gave up the ghost. My new laptop should be here by the weekend. In the meantime, please forgive the lack of response--it is a pain to write anything but a few sentences on my blackberry.
Sunday, August 28, 2011
The Morning After
There is something to be said for living in a new urban area with small trees and underground power lines. Our neighborhood, which was constructed after Hurricane Isabel in 2003, seems to have come through the storm unscathed. We never lost power and the building was pretty quiet inside, despite the howling winds outside. The most damage in Baltimore occurred in low lying waterfront areas and the suburbs. The news is reporting thousands of uprooted trees, causing thousands of power outages. They are talking days to get every one's electricity restored.
The Oriole's will be playing the Yankees at 1:30 today, as scheduled, and mass transit will start running at 3 PM. We will go out this afternoon for our walk and see for ourselves what is going on.
The Oriole's will be playing the Yankees at 1:30 today, as scheduled, and mass transit will start running at 3 PM. We will go out this afternoon for our walk and see for ourselves what is going on.
Saturday, August 27, 2011
Ready or Not
11:30 PM--Eye is supposed to reach us around 2 AM. The wind and rain seem to be increasing but our building seems secure. We have decided to say "goodnight, Irene" and go to bed.
10:15 PM--CNN reports Baltimore has sustained winds of 26 mph with gusts to 40. Eye is about 175 miles southeast of us. Things still do not look too bad from our window. We have power but outages are spreading.
9:00 PM--Key Bridge--which we can see in the distance from our apartment window--is still open to auto traffic but high profile vehicles are restricted due to winds gusting up to 40 mph. Still pretty quiet in here. Officials are warning people not to get complacent as the worst is yet to come.
7:30 PM--Wind is picking up. Rose is under the bed (typical) but Earl refuses to come out of the closet (atypical).
5:00 PM--Got tired of waiting for Irene so we went to an afternoon matinee (My Idiot Brother--so so, although I can't relate as both my brothers are geniuses--seriously). It has been raining off and on since noon but not much accumulation on streets so far. Let's hope Irene decided to spend Saturday night elsewhere.
10:30 AM--Just got back from our morning walk. It was overcast, breezy and a balmy 80 degrees. No plywood in sight but plenty of sandbags and some retailers were putting duct tape "X's" over their windows. The only eerie thing was that the birds were massed in the trees chirping away instead of flying around.
Rain is forecast to start this afternoon. Stay tuned...
10:15 PM--CNN reports Baltimore has sustained winds of 26 mph with gusts to 40. Eye is about 175 miles southeast of us. Things still do not look too bad from our window. We have power but outages are spreading.
9:00 PM--Key Bridge--which we can see in the distance from our apartment window--is still open to auto traffic but high profile vehicles are restricted due to winds gusting up to 40 mph. Still pretty quiet in here. Officials are warning people not to get complacent as the worst is yet to come.
7:30 PM--Wind is picking up. Rose is under the bed (typical) but Earl refuses to come out of the closet (atypical).
5:00 PM--Got tired of waiting for Irene so we went to an afternoon matinee (My Idiot Brother--so so, although I can't relate as both my brothers are geniuses--seriously). It has been raining off and on since noon but not much accumulation on streets so far. Let's hope Irene decided to spend Saturday night elsewhere.
10:30 AM--Just got back from our morning walk. It was overcast, breezy and a balmy 80 degrees. No plywood in sight but plenty of sandbags and some retailers were putting duct tape "X's" over their windows. The only eerie thing was that the birds were massed in the trees chirping away instead of flying around.
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| Sandbagging at Fell's Point |
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| Tavern Signs: Fell's Point Friday Evening |
Rain is forecast to start this afternoon. Stay tuned...
Friday, August 26, 2011
Calm Before the Storm
Today is a beautiful, sunny day in Charm City. You would never guess that Irene is only about 24 hours away and Annapolis, 30 miles south of us, is being evacuated.
The National Weather Service has put Baltimore under a Tropical Storm Warning. They are forecasting sustained winds of 30 to 40 miles per hour, gusting to up to 70. This is less than a category 1 hurricane that carries winds of 74 to 95 mph. Also in the forecast, eight inches of rain and storm surge--the greatest threat--of up to 12 feet. I guess there are some benefits to being on the 11th floor but right now we are looking at our Harbor view as more of a liability than when we moved in!
We are charging all our electronic devices so we can keep blogging as long as we have cell phone service.
The National Weather Service has put Baltimore under a Tropical Storm Warning. They are forecasting sustained winds of 30 to 40 miles per hour, gusting to up to 70. This is less than a category 1 hurricane that carries winds of 74 to 95 mph. Also in the forecast, eight inches of rain and storm surge--the greatest threat--of up to 12 feet. I guess there are some benefits to being on the 11th floor but right now we are looking at our Harbor view as more of a liability than when we moved in!
We are charging all our electronic devices so we can keep blogging as long as we have cell phone service.
Thursday, August 25, 2011
O Irene, Where Art Thou?
All eyes here have turned to Irene. There is very little concrete information so far. This afternoon, the City began sandbagging Fell's Point--a historic area on the Inner Harbor and the site of the oldest home in Baltimore. Ocean City, Maryland--south of us on the coast--has begun evacuating but there is no indication that Baltimore will follow suit. Since Baltimore is sheltered by the Delmarva Peninsula, it seems we may not get the most extreme weather Irene has to offer.
In addition to the provisions we bought, we filled our car with gas and got some cash from the ATM (thanks for the hints Barbara). We thought about driving west until we got out of the storm's path, but are concerned about making it back for Ernie's chemo on Tuesday. Plus, we don't know how the cats would fare. So, we've decided to stay put until we are given further direction.
Ernie has developed a new symptom. The same drug that gave him the rash is creating small lesions on his hands. The lesions look and feel like paper cuts. I can see that they are quite irritating. The oncology nurse assures us that this is normal but I hate that Ernie has yet one more thing to endure. Of course, he accepts each new occurance with his usual good humor. I will rely on this should Irene decide to visit.
In addition to the provisions we bought, we filled our car with gas and got some cash from the ATM (thanks for the hints Barbara). We thought about driving west until we got out of the storm's path, but are concerned about making it back for Ernie's chemo on Tuesday. Plus, we don't know how the cats would fare. So, we've decided to stay put until we are given further direction.
Ernie has developed a new symptom. The same drug that gave him the rash is creating small lesions on his hands. The lesions look and feel like paper cuts. I can see that they are quite irritating. The oncology nurse assures us that this is normal but I hate that Ernie has yet one more thing to endure. Of course, he accepts each new occurance with his usual good humor. I will rely on this should Irene decide to visit.
Wednesday, August 24, 2011
Bouncing Back
Ernie made a remarkably quick recovery from his chemo yesterday. Other than an hour's nap, he was on the go all day. We found a walking tour of "Baltimore's Chic Side" in a 2009 issue of National Geographic Traveler. I can only imagine the horror that real Baltimoreans--who are proud of their working class roots--would feel on reading this article. But, it fulfilled Ernie's requirement of 30 minutes of exercise per day so off we went.
The first two establishments listed were, regrettably, out of business. After that, things picked up. At Piedigrotta Bakery we had a long discussion with the proprietress about earthquakes and how she survived the 1976 earthquake in Italy (6.4 on the Richter scale with over 1000 fatalities). She was very unnerved about yesterday's quake, which has been officially declared a 5.8 in Baltimore. The pastries and gelato in her shop looked sublime. On Friday and Saturday they have "family style dinners" where you BYOB; we will definitely return to sample one.
The other gem on the walk was Mustang Alley--the most beautiful bowling alley we have ever seen. They have 12 lanes, with 3 devoted to "duckpin" bowling. Legend has it that duckpin bowling was invented in Baltimore by pitchers on the Baltimore Oriole's team who used it to warm up. Both the pins and the bowling balls are smaller than in 10 pin, so you get three trys, instead of two, to knock down the pins. Who among you will be the first to try duckpin bowling with us?
We also picked up some provisions in anticipation of Hurricane Irene--bottled water, flashlights, candles--things we didn't think to pack when we left NC. We inquired with the concierge to see if the building owners had any advice for the hurricane but got blank stares. I guess management is not listening to the Weather Channel.
The first two establishments listed were, regrettably, out of business. After that, things picked up. At Piedigrotta Bakery we had a long discussion with the proprietress about earthquakes and how she survived the 1976 earthquake in Italy (6.4 on the Richter scale with over 1000 fatalities). She was very unnerved about yesterday's quake, which has been officially declared a 5.8 in Baltimore. The pastries and gelato in her shop looked sublime. On Friday and Saturday they have "family style dinners" where you BYOB; we will definitely return to sample one.
The other gem on the walk was Mustang Alley--the most beautiful bowling alley we have ever seen. They have 12 lanes, with 3 devoted to "duckpin" bowling. Legend has it that duckpin bowling was invented in Baltimore by pitchers on the Baltimore Oriole's team who used it to warm up. Both the pins and the bowling balls are smaller than in 10 pin, so you get three trys, instead of two, to knock down the pins. Who among you will be the first to try duckpin bowling with us?
We also picked up some provisions in anticipation of Hurricane Irene--bottled water, flashlights, candles--things we didn't think to pack when we left NC. We inquired with the concierge to see if the building owners had any advice for the hurricane but got blank stares. I guess management is not listening to the Weather Channel.
Tuesday, August 23, 2011
Shake, Rattle and Roll
A particularly exciting chemo today. Ernie is now 2/3 completed with the first treatment phase!! He was very near the bottom limit on his white cell count but made the cutoff and was allowed to get his chemo. To reach this milestone, he had to endure a "code red" (hospital speak for a fire--turned out to be a drill and they did not make us evacuate) plus the largest earthquake in the area in over 100 years.
Baltimore was 125 miles from the epicenter so we got a pretty good jolt although Ernie barely opened his eyes due to the Benadryl cocktail he gets. I was glad we were on the second floor of the hospital instead of our 11th floor apartment. On the way home on the bus, we had to detour around several buildings that had lost pieces and parts Also, the nuclear reactor near us shut down automatically and is being checked for problems. Then we learned that Hurricane Irene is supposed to make her way up the Chesapeake this weekend. Wonder if we should familiarize ourselves with evacuation routes?
Baltimore was 125 miles from the epicenter so we got a pretty good jolt although Ernie barely opened his eyes due to the Benadryl cocktail he gets. I was glad we were on the second floor of the hospital instead of our 11th floor apartment. On the way home on the bus, we had to detour around several buildings that had lost pieces and parts Also, the nuclear reactor near us shut down automatically and is being checked for problems. Then we learned that Hurricane Irene is supposed to make her way up the Chesapeake this weekend. Wonder if we should familiarize ourselves with evacuation routes?
Monday, August 22, 2011
On Vacation
Although Ernie is more fatigued now than at the start of the chemo, he is determined to get out of the apartment and enjoy Baltimore.
On Saturday, we celebrated in Little Italy as they marked the end of summer with their annual Festival of Saint Gabriel. Street vendors sold "Italian iced tea" (you had to be 21 to purchase this), meatball sandwiches, pizza by the slice, Italian sausage sandwiches, cannoli, and Italian ice, with the proceeds going to the local parish church. There were also games of chance and a bocci tournament where passersby yelled "paesano, what's the score."
Sunday we made our weekly trip to the farmer's market. Each week the produce is more abundant. We bought ingredients for fresh tomato sauce--to put on the fresh pasta we buy in Little Italy--as well as ingredients for more ratatouille.
It rained in the afternoon so we visited the Walters Art Museum in a neighborhood called Mt Vernon. The collection was started by a Baltimorian--William Thomas Walters--during the Civil War. For business reasons, Mr. Walters did not want to choose sides so he moved his family to France for the duration. While in France, he began to collect art. When he died, he turned the collection over to his son--Henry--to continue. Together, they amassed over 22,000 works including French Impressionists, Greek and Roman antiquities, and Renaissance Europe (we particularly liked the copy of the Mona Lisa done in the 1600s).
Today we took another of the Visitor's Centers wonderful tours that focused on the older part of the city that is now the cultural center of Baltimore. I think Ernie is probably more than ready to sleep away the day at chemo tomorrow!
On Saturday, we celebrated in Little Italy as they marked the end of summer with their annual Festival of Saint Gabriel. Street vendors sold "Italian iced tea" (you had to be 21 to purchase this), meatball sandwiches, pizza by the slice, Italian sausage sandwiches, cannoli, and Italian ice, with the proceeds going to the local parish church. There were also games of chance and a bocci tournament where passersby yelled "paesano, what's the score."
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| Pizza by the slice! |
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| Flower Merchant at Farmer's Market |
It rained in the afternoon so we visited the Walters Art Museum in a neighborhood called Mt Vernon. The collection was started by a Baltimorian--William Thomas Walters--during the Civil War. For business reasons, Mr. Walters did not want to choose sides so he moved his family to France for the duration. While in France, he began to collect art. When he died, he turned the collection over to his son--Henry--to continue. Together, they amassed over 22,000 works including French Impressionists, Greek and Roman antiquities, and Renaissance Europe (we particularly liked the copy of the Mona Lisa done in the 1600s).
Today we took another of the Visitor's Centers wonderful tours that focused on the older part of the city that is now the cultural center of Baltimore. I think Ernie is probably more than ready to sleep away the day at chemo tomorrow!
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| Sculpture of Nancy Pelosi's father--long time Mayor of Baltimore |
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