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.
Wednesday, August 31, 2011
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 |
Friday, August 19, 2011
Running the Gaunlet
Ernie continues to endure each and every procedure that comes his way. As part of the gastric emptying study, "breakfast" this morning consisted of eggbeaters cooked in a Styrofoam cup in the microwave with a dash of radioactive isotopes. Ernie is not one to complain so when he said they were awful and that he could hardly choke them down, I knew it must have been bad. Of course he persevered, the researchers got their pictures and we were home by noon.
The chemo is starting to catch up with him, as we were warned. He is getting more fatigued each day. Of course, he refuses to succumb. He took a nap after lunch and then insisted on a 2 mile walk. We both hope that his white count stays high enough that he can complete the chemo without interruption.
The chemo is starting to catch up with him, as we were warned. He is getting more fatigued each day. Of course, he refuses to succumb. He took a nap after lunch and then insisted on a 2 mile walk. We both hope that his white count stays high enough that he can complete the chemo without interruption.
Thursday, August 18, 2011
R&R
It has been two days since chemo, and a rare time off from tests and appointments. Yesterday we toured Hampton National Historic Site. Hampton was originally a summer home for a family of wealthy Baltimore steel mill owners. It is about 11 miles from the Inner Harbor but took 17 hours by horse and carriage when it was completed in 1790. Originally built on 25,000 acres, this Georgian mansion was bigger than Monticello and Mt Vernon combined. It is over 90% original and, thanks to your tax dollars, tours are FREE.
Tomorrow Ernie has his "gastric emptying study"--the second of the two studies to determine best placement of the feeding tube. For this, we have to be at "work" by 6:45. The test lasts 5 hours and includes a complementary breakfast laced with radioactive materials. Once he eats, they use a Geiger counter of sorts to track the flow of food. Yum. Think I will eat in the cafeteria instead.
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| Hampton Mansion |
Tomorrow Ernie has his "gastric emptying study"--the second of the two studies to determine best placement of the feeding tube. For this, we have to be at "work" by 6:45. The test lasts 5 hours and includes a complementary breakfast laced with radioactive materials. Once he eats, they use a Geiger counter of sorts to track the flow of food. Yum. Think I will eat in the cafeteria instead.
Tuesday, August 16, 2011
Hi Ho Hi Ho It's Off To Work We Go
Rip Van Winkle arrived just about the same time as Jim and Charley did on Saturday. Ernie said that if someone had offered him a million dollars to stay awake Sunday, he could not have done it. He did rally for the Chicago concert on Sunday (excellent) and for dinner on Monday with a former student and dear friend, Javin Hutchinson visiting from London, and his girl friend. .
After our big night out with Javin, it was hard to get going. We had to be at "work" today at 7:30. As I write this, Ernie is finishing chemo #5--now he is more than half done with the standalone chemo! We are finally allowing ourselves to look ahead and to starting to ask questions about the next phase.
We are told that chemoradiation includes only 1 chemo drug plus radiation. The radiation will be 5 days per week but only takes about 15 minutes. The chemo in this phase will be given orally rather than through an IV. So, our trips to the hospital will be shorter but more frequent. If Ernie's white cell counts hold up and he doesn't have to skip any weeks of chemo, we could start chemoradiation the first week in October. This gets us home in time for Thanksgiving. The party happiest about this is the apartment rental company. Our lease had us leaving September 30. In our optimism, we forgot about the inevitable delays. We will continue to take things one day at a time and not get too invested in a move date yet.
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| Amy and Javin |
After our big night out with Javin, it was hard to get going. We had to be at "work" today at 7:30. As I write this, Ernie is finishing chemo #5--now he is more than half done with the standalone chemo! We are finally allowing ourselves to look ahead and to starting to ask questions about the next phase.
We are told that chemoradiation includes only 1 chemo drug plus radiation. The radiation will be 5 days per week but only takes about 15 minutes. The chemo in this phase will be given orally rather than through an IV. So, our trips to the hospital will be shorter but more frequent. If Ernie's white cell counts hold up and he doesn't have to skip any weeks of chemo, we could start chemoradiation the first week in October. This gets us home in time for Thanksgiving. The party happiest about this is the apartment rental company. Our lease had us leaving September 30. In our optimism, we forgot about the inevitable delays. We will continue to take things one day at a time and not get too invested in a move date yet.
Saturday, August 13, 2011
The Biggest Loser
In the last two days, Ernie has dropped 8 pounds and is now back down to his fighting weight. The oncology nurse took pity on him yesterday and did not give him any more fluids since he is feeling good. The fatigue has not been as bad this time for which we are grateful.
Jim and Charley arrived today once again armed with bags full of produce from our garden. They even brought a basil plant so that we would have enough to make fresh pasta sauce. Tomorrow the four of us are going to see Chicago at Pier Six Pavilion--a concert shell about 2 blocks from our apartment. Times like this help us forget about why we are here.
Jim and Charley arrived today once again armed with bags full of produce from our garden. They even brought a basil plant so that we would have enough to make fresh pasta sauce. Tomorrow the four of us are going to see Chicago at Pier Six Pavilion--a concert shell about 2 blocks from our apartment. Times like this help us forget about why we are here.
Thursday, August 11, 2011
Weighing In
All of the fluids that were pumped into Ernie on Monday and Tuesday seem to have settled firmly around his middle. He woke up this morning "feeling like one of those guys who has to wear their pants below their stomachs." The triage nurse assured us that the steroids are to blame--causing him to retain liquid in his tissues. The good news is that the steroids should be out of his system by tomorrow evening. The bad news is that when the steroids depart, Rip Van Winkle will return.
We are supposed to go in tomorrow and get MORE fluids. They promised to evaluate the situation before deciding whether or not to proceed as planned.
We are supposed to go in tomorrow and get MORE fluids. They promised to evaluate the situation before deciding whether or not to proceed as planned.
Wednesday, August 10, 2011
Shorn Again
A rather mundane day today (yippee). The highlight was a trip to the barber for complete hair removal. The buzz job he got a month ago had grown back enough to look a little shaggy and was starting to thin out from the chemo. Also, the steroids he got as part of his treatment yesterday temporarily knocked out the rash so the timing seemed perfect.
Energy wise, he did pretty well today. So far, no sign of Rip Van Winkle...
Energy wise, he did pretty well today. So far, no sign of Rip Van Winkle...
Tuesday, August 9, 2011
The Incredible Shrinking Tumor!
Before chemo today, Ernie's Oncologist examined the tumor. After gaging him a few times to get a good look, she said that the tumor is about 50% smaller than before chemo. The lumps on his lymph nodes are also smaller. This explains why Ernie has less pain when he eats and why his voice has returned to normal. So, things are definitely headed in the right direction.
In 6 weeks (end of chemo) they will repeat the MRI and, depending on what they see, decide if Ernie will be subjected to 5.5 weeks or 7 weeks of radiation plus chemo--sounds kind of like Ground Hog day. At this point they will also decide on the feeding tube. Right now, they seem inclined to let him try without if he qualifies for the 5.5 weeks of chemoradiation. While all of this is happening, we may get a week to 10 days off as well! Of course, that adds to the total time here.
We have about an hour and a half of chemo left to go. They have added magnesium to the many bags of stuff being pumped into him. "The chemo drugs waste magnesium." Somehow, Ernie manages to maintain his sense of humor throughout it all. He says that he draws strength from me but it is really the other way around.
In 6 weeks (end of chemo) they will repeat the MRI and, depending on what they see, decide if Ernie will be subjected to 5.5 weeks or 7 weeks of radiation plus chemo--sounds kind of like Ground Hog day. At this point they will also decide on the feeding tube. Right now, they seem inclined to let him try without if he qualifies for the 5.5 weeks of chemoradiation. While all of this is happening, we may get a week to 10 days off as well! Of course, that adds to the total time here.
We have about an hour and a half of chemo left to go. They have added magnesium to the many bags of stuff being pumped into him. "The chemo drugs waste magnesium." Somehow, Ernie manages to maintain his sense of humor throughout it all. He says that he draws strength from me but it is really the other way around.
Monday, August 8, 2011
Water, Water Everywhere
With the weekend over, we went back to our job of beating cancer. This means a good part of the day was spent at Johns Hopkins. Blood work first followed by 2 hours of hydration. This is supposed to make tomorrow's chemo more tolerable.
Tomorrow Ernie starts Cycle 2. As with Cycle 1, there are three drugs the first week and then two drugs the next two weeks. The harshest drug is only given in week one of the cycle and is more dehydrating than the others. Dehydration causes side effects like nausea and vomiting that you want to avoid.
In the course of reviewing Ernie's blood work, the oncology nurse noted that the salt level in his blood was on the low side. Even though he loves salty foods, Ernie has been obsessively careful about his salt intake due to his scleroderma.
Well, he is in heaven hearing this news about his salt level. He immediately suggested we take in a movie tonight so that he can have the popcorn--something he has been craving since his schleroderma doctor put him on a low salt diet. I guess every cloud does have a silver lining.
Tomorrow Ernie starts Cycle 2. As with Cycle 1, there are three drugs the first week and then two drugs the next two weeks. The harshest drug is only given in week one of the cycle and is more dehydrating than the others. Dehydration causes side effects like nausea and vomiting that you want to avoid.
In the course of reviewing Ernie's blood work, the oncology nurse noted that the salt level in his blood was on the low side. Even though he loves salty foods, Ernie has been obsessively careful about his salt intake due to his scleroderma.
Well, he is in heaven hearing this news about his salt level. He immediately suggested we take in a movie tonight so that he can have the popcorn--something he has been craving since his schleroderma doctor put him on a low salt diet. I guess every cloud does have a silver lining.
Sunday, August 7, 2011
Taking a Breather
Our R&R continued through the weekend. Dennis and Lesley Gehr (Pound Ridge, NY) arrived on Friday. They are foodies like we are and, lucky for us, it is Restaurant Week in Baltimore. Each of the 65 participating restaurants offers a special 3-course meal. We sampled two seafood restaurants--both great. In between meals, we visited the Baltimore Museum of Art--home to the Cone sister's collecton of impressionist art--and browsed "Antique Row".
No need to go to the Farmer's Market this morning. Dennis and Lesley brought the farm to us--heirloom tomatoes, eggplant, blueberries, peppers and potatoes fresh from their garden. YUM. I see ratatouille and caprese salad in our future.
After the Gehr's left today, we headed to Walmart to purchase a new shower head. Ernie's rash is improving with the antibiotics but it is very tender. Sparing no expense for its tenants, the apartment showers have only one option: full spray. Lucky Ernie is a handy guy and he now has 4 spray options. In the words of Donald Miller, it is always the simple things that change our lives.
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| Dennis, Lesley, Cyndi and Ernie at Roy's Hawaiian Fusion |
After the Gehr's left today, we headed to Walmart to purchase a new shower head. Ernie's rash is improving with the antibiotics but it is very tender. Sparing no expense for its tenants, the apartment showers have only one option: full spray. Lucky Ernie is a handy guy and he now has 4 spray options. In the words of Donald Miller, it is always the simple things that change our lives.
Thursday, August 4, 2011
Touched by Saints
It was a lovely, relaxing day today thanks to a visit from Dan and Bernadette Murphy (former Winston-Salemites). They are originally from the Baltimore area and are here visiting Bern's mom. We told them we could not understand how they could forsake the charms of Baltimore for the oppressive Georgia heat!
Bern brought a special gift from her sister to Ernie--some oil blessed by a relic of St.Peregrine, the patron saint of cancer patients! We are so moved by the outpouring of caring and generosity we received.
Bern brought a special gift from her sister to Ernie--some oil blessed by a relic of St.Peregrine, the patron saint of cancer patients! We are so moved by the outpouring of caring and generosity we received.
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| Bernadette, Dan and Ernie on our balcony |
Wednesday, August 3, 2011
Tests, Tests, and More Tests
With all of the medical tests Ernie has had, we were certain the doctors had seen every thing there was to see. Evidently not. Today they preformed a "cine esophagram" to test his swallowing function. The doctors want a baseline pre-radiation and also want to evaluate his need for a feeding tube during radiation. This tube is inserted in the stomach or intestines to insure patients can get adequate nutrition if it is too painful to swallow food.
Some hospitals, includingForsyth Cancer Center
We do not have a verdict yet. He has to do one more test--this one lasts 6 hours--next week before they will make a determination and also identify the preferred location should a tube be necessary.
We also learned today that he has to start swallowing exercises to help build and maintain his swallowing function. We are trying to imagine what swallowing exercises might entail. We are both doing an excellent job of swallowing the wonderful restaurant food and we are hoping he will get credit for that.
Some hospitals, including
We do not have a verdict yet. He has to do one more test--this one lasts 6 hours--next week before they will make a determination and also identify the preferred location should a tube be necessary.
We also learned today that he has to start swallowing exercises to help build and maintain his swallowing function. We are trying to imagine what swallowing exercises might entail. We are both doing an excellent job of swallowing the wonderful restaurant food and we are hoping he will get credit for that.
Tuesday, August 2, 2011
One step closer to the finish line
We are about an hour away from finishing chemo #3, which marks the end of cycle 1. This seems to us like a huge milestone. Two more 3-week cycles and we can move on to the next step--chemoradiation.
Yesterday, the "rash" (an understatement) got bad enough that Ernie started taking the anti-biotic. It is an amazing difference after only 24 hours. He will have to continue to take the antibiotics for the duration of treatment to keep the rash under control. The oncology nurse said not to expect it to disappear completely until a month after treatment stops.
As she did last week, the nurse is giving Ernie extra fluids. Despite his best efforts to drink 70 ounces of fluid per day, his kidney function remains on the high side of normal. Also, they want Ernie to come in next Monday prior to his Tuesday chemo to get more fluids. Since next Tuesday is the start of cycle two, he will get all three drugs. Last time, this really knocked him out and the extra fluids are an attempt to improve the quality of the week following.
We remain incredibly impressed with the professionalism and dedication of the staff here. Although we would dearly love to be home and nearer to friends and family, we feel very grateful for the wonderful care we are getting here.
Yesterday, the "rash" (an understatement) got bad enough that Ernie started taking the anti-biotic. It is an amazing difference after only 24 hours. He will have to continue to take the antibiotics for the duration of treatment to keep the rash under control. The oncology nurse said not to expect it to disappear completely until a month after treatment stops.
As she did last week, the nurse is giving Ernie extra fluids. Despite his best efforts to drink 70 ounces of fluid per day, his kidney function remains on the high side of normal. Also, they want Ernie to come in next Monday prior to his Tuesday chemo to get more fluids. Since next Tuesday is the start of cycle two, he will get all three drugs. Last time, this really knocked him out and the extra fluids are an attempt to improve the quality of the week following.
We remain incredibly impressed with the professionalism and dedication of the staff here. Although we would dearly love to be home and nearer to friends and family, we feel very grateful for the wonderful care we are getting here.
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