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...
Wednesday, August 10, 2011
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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