We blew right past Winter Haven PA and headed for Woodbine, MD (suburban Baltimore) in order to avoid the worst part of the snowy forecast. We lost 2 hours as we got off track in Harrisburg PA area this day. We arrived at Ramblin Pines RV Park in Woodbine and settle in for the night. We park level again, so no need to detach from the truck. Not to many winter campers, but we are not alone here. There's a large motor home aside from us which is here from Key West.
We stay here so that tomorrow we can visit with my big sister, Ginny, who lives 17 miles away in Ellicott City, MD. She picks us up here around noonish, and entertains us for the entire day, including dinner at her place with my nephew/neice and all of their children. Ginny put this visit together, what a good lady and family leader. She knocked herself out.
George (our nephew-in-law) brought us back to Woodbine around 9pm. In the morning there was an inch of snow of the ground, and 2 inches by the time we pulled out of here. A snow plow is making laps around the park roads (which are paved) as we prepare to drive away. We slide down the snow covered camp road to the Highway 97 which is wet. They treat the roads with 'brine' for these conditions. I guess it sounds better than 'salt'. Excuse me, but 'Welcome to MD'. That's what the camp owner said to me when I gently commented on the $45 nightly rates.
We'll travel smaller roads for about an hour as we go towards suburban Washington DC where we'll get on the 495 beltway and then 95 South once again. We are heading to Wilson, NC for our next overnight stay. It's 290 miles away.
Overnight stays have cost between $19 and $45/night so far. We'll manage this to be closer to the $19 end of things fron now on as best we can. We are members of 2 RV clubs and enjoy preferred rates much of the time, and we hope to find that RV parks don't resent us for that. I doubt it. Mom would say campers are nice people, so let's think positive.
Oh, the diesel fuel cost has been from $3.55/gal at home to as low as $3.19/gal as we move south. Will be nice if we can keep that trend going.
Monday, January 10, 2011
Wednesday, January 5, 2011
OUR RV ADVENTURE begins today !!
BooYa - HipHip Hooray, we finally started our big adventure.
It's Wednesday Jan 5, and after putting our closing touches on the house, we had pets in hand as we piled into the truck. A much long awaited moment, which by the way caused for many a sleepless night of worry. Now, we calm down. If we forgot anything now, well, we can't worry about it any more. We check tire inflations and fill the tank with diesel fuel. By noon we were on 95 heading south! We run into snow showers after being on the turnpike for one mile or so- yuk. We can’t wait until we get to NC and hoping to beat the upcoming snow storm weather forecast.
We'll be missing our family, church family, and all you friends, so please think of us and keep us in your prayers.
Our first stop is in Sturbridge, MA at the Yogi Bear’s Jellystone Campground. As we arrived I go into the office and Dave turns on the furnace in the RV. It is freezing here, and going to be 18 degrees tonight. It’s still daylight and Dave has time to ease his worried mind about backing the RV into a slot in the woods. There are 5 pull thru slots here, and no one around, so he practices backing into one of the slots. After 3 tries he is confident. We’re the only ones in the pull-thru area and I watch him go back and forth. He’s a happy camper! The RV was dead on level once we parked it, so we won't even disconnect from the truck this night. We'll just secure the four corners so it doesn't bounce too much when we walk inside, and be good to pack up and leave in the morning.
We notice a big Ostritch (sp?) in a coral next to the camp office. He is loaded with big feathers, and we figure if it can survive in the cold, so can we. There is a small pond here too, very much frozen over and abandoned. This is probably a nice campground in season, but just an overnight stop for us.
Dave brushes Dixie and I take her for a walk. We have wine, cheese, pepperoni & crackers for dinner. We both agree that today was a great day! We look forward to using our new camera with pictures (coming soon) of our big adventure on the road.
Soon after we set up and before dark, RV'ers from Bangor Maine pull in next to us, and another one comes up along side around 8pm. We will leave in the morning for Winter Haven PA for the next stop on our voyage to warmer weather. Nice to know we're not the only folks doing this kind of thing.
Our on-board plumbing system has been full of anti-freeze since Dave winterized the RV in October, so we are 'dry camping' at least till we get South, or somewhere warm. Till then, we carry a supply of windshield washer fluid to flush with, and of course we hope to have nice hot showers at the parks we pull in to. We hope for solid Cable TV and Wi-Fi signals to be everywhere we go too. That's part of the adventure I suppose. The other services we have on board and available while we're in the cold climates include heat, fridge, lights, and AC and DC current.
It's Wednesday Jan 5, and after putting our closing touches on the house, we had pets in hand as we piled into the truck. A much long awaited moment, which by the way caused for many a sleepless night of worry. Now, we calm down. If we forgot anything now, well, we can't worry about it any more. We check tire inflations and fill the tank with diesel fuel. By noon we were on 95 heading south! We run into snow showers after being on the turnpike for one mile or so- yuk. We can’t wait until we get to NC and hoping to beat the upcoming snow storm weather forecast.
We'll be missing our family, church family, and all you friends, so please think of us and keep us in your prayers.
Our first stop is in Sturbridge, MA at the Yogi Bear’s Jellystone Campground. As we arrived I go into the office and Dave turns on the furnace in the RV. It is freezing here, and going to be 18 degrees tonight. It’s still daylight and Dave has time to ease his worried mind about backing the RV into a slot in the woods. There are 5 pull thru slots here, and no one around, so he practices backing into one of the slots. After 3 tries he is confident. We’re the only ones in the pull-thru area and I watch him go back and forth. He’s a happy camper! The RV was dead on level once we parked it, so we won't even disconnect from the truck this night. We'll just secure the four corners so it doesn't bounce too much when we walk inside, and be good to pack up and leave in the morning.
We notice a big Ostritch (sp?) in a coral next to the camp office. He is loaded with big feathers, and we figure if it can survive in the cold, so can we. There is a small pond here too, very much frozen over and abandoned. This is probably a nice campground in season, but just an overnight stop for us.
Dave brushes Dixie and I take her for a walk. We have wine, cheese, pepperoni & crackers for dinner. We both agree that today was a great day! We look forward to using our new camera with pictures (coming soon) of our big adventure on the road.
Soon after we set up and before dark, RV'ers from Bangor Maine pull in next to us, and another one comes up along side around 8pm. We will leave in the morning for Winter Haven PA for the next stop on our voyage to warmer weather. Nice to know we're not the only folks doing this kind of thing.
Our on-board plumbing system has been full of anti-freeze since Dave winterized the RV in October, so we are 'dry camping' at least till we get South, or somewhere warm. Till then, we carry a supply of windshield washer fluid to flush with, and of course we hope to have nice hot showers at the parks we pull in to. We hope for solid Cable TV and Wi-Fi signals to be everywhere we go too. That's part of the adventure I suppose. The other services we have on board and available while we're in the cold climates include heat, fridge, lights, and AC and DC current.
Thursday, September 2, 2010
9/1 Visit to Cardiologist
We saw Dr. Sze yesterday as planned.
He explained that back on Aug 24 Anne had about 10 centimeters of fluid around the back of her heart, and now there are 7 centimeters. This means that the body has been absorbing the fluid naturally as we had hoped it would. Let's hope the trend continues. He doesn't need to see her again for 2 months.
Tomorrow we see the oncologist Dr. Ebrahim, and I think he'll be pleased when he sees Anne. I don't know what the next steps will be with him. Will let you know.
We were camping up at Pemaquid Point Campground last week and we went out to dinner one night at New Harbor. The parking lot for Shaw's Restaurant was hillside, from the road (Rt. 32) down to the restaurant at sea level. It was quite a steep hill such that it was a long drop out of the pick up truck if you were on the downhill side. That wasn't a problem.
Anyway, as we ascended the hill after dinner Anne fell behind the group. You know me, I didn't even notice her standing back there all alone. She had to stop and struggle to catch her breath, point being, she still cannot do things like walk up hills. It's because of the fluid that crowds her heart, lungs, and stomach. She has started to go back to Curves tho, starting slowly to try to work out once again.
Thanks for reading, and I'll keep you posted with any news about Anne. She is feeling and doing much better all the time, and happy with her curly hair.
Our best to all of you friends. Thanks for being there.
He explained that back on Aug 24 Anne had about 10 centimeters of fluid around the back of her heart, and now there are 7 centimeters. This means that the body has been absorbing the fluid naturally as we had hoped it would. Let's hope the trend continues. He doesn't need to see her again for 2 months.
Tomorrow we see the oncologist Dr. Ebrahim, and I think he'll be pleased when he sees Anne. I don't know what the next steps will be with him. Will let you know.
We were camping up at Pemaquid Point Campground last week and we went out to dinner one night at New Harbor. The parking lot for Shaw's Restaurant was hillside, from the road (Rt. 32) down to the restaurant at sea level. It was quite a steep hill such that it was a long drop out of the pick up truck if you were on the downhill side. That wasn't a problem.
Anyway, as we ascended the hill after dinner Anne fell behind the group. You know me, I didn't even notice her standing back there all alone. She had to stop and struggle to catch her breath, point being, she still cannot do things like walk up hills. It's because of the fluid that crowds her heart, lungs, and stomach. She has started to go back to Curves tho, starting slowly to try to work out once again.
Thanks for reading, and I'll keep you posted with any news about Anne. She is feeling and doing much better all the time, and happy with her curly hair.
Our best to all of you friends. Thanks for being there.
Thursday, August 12, 2010
Anne is slowly improving, getting better now
Hello all,
This is to let you know that Anne is improving ever so slowly, day by day.
She still cannot take deep breaths, so cannot exercise or take walks yet, and, she has some digestion issues occasionally depending on what she eats. I can tell you that the red licorice was a very bad idea. I thought after she tried that that we'd be on the way back into the ER, but she weathered the storm and used pain medicine. There are some other foods that have a terrible affect on her intestines.
Anne has lost alot of weight, and she looks great.
She will see a Cardiologist on 9/1 and have another ekocardiogram done to look at the fluid near her heart. We hope the fluid will leach out of there and dissipate naturally throughout her body. Her Cardiologist will be Dr. Sze and he is very good.
We saw the surgeon (Dr. MacGillivray) yesterday, and he has released her. He felt she was doing well, just needing more time. Doug is an exceptional surgeon, but not someone you'd want to be stranded on a desert island with.
We have another appointment with the oncologist (Dr. Ebrahim) and we are glad for that. He is just fantastic and he ties everything all together for us. When we're with him it's as if he has nothing else to do except care for Anne, with no one else waiting in line to see him. He's a blessing as have been so many of the Drs., nurses, residents, technicians, and all who have cared for Anne this year.
Anne still has to avoid the humidity and take it pretty easy, but she feels like doing things now, and soon there will be no stopping her. Thank you all again and again for all of your cards, prayers, and well wishes. She knew you were there and thinking about her, and you helped her so very much by being there.
This is to let you know that Anne is improving ever so slowly, day by day.
She still cannot take deep breaths, so cannot exercise or take walks yet, and, she has some digestion issues occasionally depending on what she eats. I can tell you that the red licorice was a very bad idea. I thought after she tried that that we'd be on the way back into the ER, but she weathered the storm and used pain medicine. There are some other foods that have a terrible affect on her intestines.
Anne has lost alot of weight, and she looks great.
She will see a Cardiologist on 9/1 and have another ekocardiogram done to look at the fluid near her heart. We hope the fluid will leach out of there and dissipate naturally throughout her body. Her Cardiologist will be Dr. Sze and he is very good.
We saw the surgeon (Dr. MacGillivray) yesterday, and he has released her. He felt she was doing well, just needing more time. Doug is an exceptional surgeon, but not someone you'd want to be stranded on a desert island with.
We have another appointment with the oncologist (Dr. Ebrahim) and we are glad for that. He is just fantastic and he ties everything all together for us. When we're with him it's as if he has nothing else to do except care for Anne, with no one else waiting in line to see him. He's a blessing as have been so many of the Drs., nurses, residents, technicians, and all who have cared for Anne this year.
Anne still has to avoid the humidity and take it pretty easy, but she feels like doing things now, and soon there will be no stopping her. Thank you all again and again for all of your cards, prayers, and well wishes. She knew you were there and thinking about her, and you helped her so very much by being there.
Tuesday, July 27, 2010
Discharged and Home Again
This morning Anne was discharged. She still has some labored breathing and shortness of breath if she over does it with physical activity.
Dr's did not want to do anything else to try and solve the problem. They think Anne needs much more time to recover from the esophagectomy.
Anne has some new anti-inflamatory meds to take too.
The majority of time in the hospital the past 5 days was used in taking xrays, ekocardiograms, etc, etc, and with various Doctors analyzing those test results and discussing those together. At the same time Anne was taking meds to reduce the amounts of fluid in her body.
Dr's did not want to do anything else to try and solve the problem. They think Anne needs much more time to recover from the esophagectomy.
Anne has some new anti-inflamatory meds to take too.
The majority of time in the hospital the past 5 days was used in taking xrays, ekocardiograms, etc, etc, and with various Doctors analyzing those test results and discussing those together. At the same time Anne was taking meds to reduce the amounts of fluid in her body.
Saturday, July 24, 2010
Long Weekend In The Hospital
Anne will be in Maine Medical Center all weekend. She is being treated with diaretics and monitored. The diaretics are being used to try and reduce fluid around Anne's lungs and heart.
This morning Dr. Poulan came in and told Anne that he thinks these diaretics will work. All of the Drs working on this problem agree that there is fluid near the lungs and heart, but the amount of fluid doesn't alarm them. They do not want to do anything to invasive at this time.
We learned that Anne's diaphram is out of place, higher than it should be. It may be a result of the esophajectomy. It is keeping one of Anne's lungs from filling to capacity, thus the shortness of breath and chest pain.
Other than that there isn't much news to report. Let's hope and pray that this plan is going to help Anne feel better.
Thanks for reading.
This morning Dr. Poulan came in and told Anne that he thinks these diaretics will work. All of the Drs working on this problem agree that there is fluid near the lungs and heart, but the amount of fluid doesn't alarm them. They do not want to do anything to invasive at this time.
We learned that Anne's diaphram is out of place, higher than it should be. It may be a result of the esophajectomy. It is keeping one of Anne's lungs from filling to capacity, thus the shortness of breath and chest pain.
Other than that there isn't much news to report. Let's hope and pray that this plan is going to help Anne feel better.
Thanks for reading.
Friday, July 23, 2010
Anne Hospitalized again
Yesterday we went to Maine Cardiology Associates for a scheduled appt for an EKO Cardiogram. This was a follow up to the one done 2-3 weeks ago which showed a small amount of fluid around Anne's heart. Drs weren't concerned with the amount of fluid found at that time, but scheduled this EKO Cardiogram so as to do a comparison.
A bit more fluid was found yesterday, and the Dr. (Dr. Z) (Sze) was concerned. He arranged for Anne to be admitted to Maine Med for additional testing which would determine whether a procedure would be necessary to remove fluid from around Annes heart or lungs.
Anne hasn't complained very much (I wish she WOULD complain more and sooner), but she has had chest pain and has been unable to exercise due to shortness of breath. She felt that she had pulled a muscle getting into the pickup last weekend, she was wrong. Now, this fluid is suspected to be causing the pain and shortness of breath.
If you remember, Anne has sufferred from both plural effusions (fluid near the lungs) and paracardial effusions (fluid near the heart). Now, several Drs are analyzing lots of numbers and test data, and they work as a team to share ideas and to agree on the best approach.
This morning Anne went to the 8th floor for a test where they inserted a catheter/wire thru the groin and pushed it up thru a vein near to her heart in order to check for pressure (from fluid), and determine how the heart was performing. This test did not 'hurt'.
Dr. Poulan completed this test and spoke with me and he said there was pressure around both sides of the heart. With that, he would recommend a procedure be scheduled asap to remove or displace the fluid from the area around the heart. It would be done via a small incision (a simple surgery). A 'window' would be made in there so fluid could escape from around the heart, and move to other areas of Anne's body where it can and should dissipate on it's own. Some of the fluid will be captured and sent away for testing, i.e. for pneumonia, bacteria, etc.. the fluid is said to be caused by inflamation from the surgery, i.e. just like any wound drains fluid.
At this point, the latest plan that the Drs have agreed to is to use a needle this afternoon, bedside, to remove fluid from the area near the left lung. They concur that this is the least invasive thing that will do Anne the most good at this time. They will observe her afterwards and this weekend to see how she does with that. If she worsens, there are other more invasive things that would be considered to solve the problem (alleviate the pain and eliminate the shortness of breath). At present, we wait for the bedside procedure to happen. The team of Drs are interested in doing this as soon as possible. Anne is resting comfortably.
A bit more fluid was found yesterday, and the Dr. (Dr. Z) (Sze) was concerned. He arranged for Anne to be admitted to Maine Med for additional testing which would determine whether a procedure would be necessary to remove fluid from around Annes heart or lungs.
Anne hasn't complained very much (I wish she WOULD complain more and sooner), but she has had chest pain and has been unable to exercise due to shortness of breath. She felt that she had pulled a muscle getting into the pickup last weekend, she was wrong. Now, this fluid is suspected to be causing the pain and shortness of breath.
If you remember, Anne has sufferred from both plural effusions (fluid near the lungs) and paracardial effusions (fluid near the heart). Now, several Drs are analyzing lots of numbers and test data, and they work as a team to share ideas and to agree on the best approach.
This morning Anne went to the 8th floor for a test where they inserted a catheter/wire thru the groin and pushed it up thru a vein near to her heart in order to check for pressure (from fluid), and determine how the heart was performing. This test did not 'hurt'.
Dr. Poulan completed this test and spoke with me and he said there was pressure around both sides of the heart. With that, he would recommend a procedure be scheduled asap to remove or displace the fluid from the area around the heart. It would be done via a small incision (a simple surgery). A 'window' would be made in there so fluid could escape from around the heart, and move to other areas of Anne's body where it can and should dissipate on it's own. Some of the fluid will be captured and sent away for testing, i.e. for pneumonia, bacteria, etc.. the fluid is said to be caused by inflamation from the surgery, i.e. just like any wound drains fluid.
At this point, the latest plan that the Drs have agreed to is to use a needle this afternoon, bedside, to remove fluid from the area near the left lung. They concur that this is the least invasive thing that will do Anne the most good at this time. They will observe her afterwards and this weekend to see how she does with that. If she worsens, there are other more invasive things that would be considered to solve the problem (alleviate the pain and eliminate the shortness of breath). At present, we wait for the bedside procedure to happen. The team of Drs are interested in doing this as soon as possible. Anne is resting comfortably.
Sunday, July 11, 2010
Home Again !
On Thursday Anne was looking and feeling better. A pulmonary Dr came to evaluate Anne. He did some breathing tests. He didn't find anything of concern.
Anne came home late on Friday.
There was no pneumonia, and no concern for any fluid around Anne's heart or lungs.
Anne came home late on Friday.
There was no pneumonia, and no concern for any fluid around Anne's heart or lungs.
Wednesday, July 7, 2010
Hospitalized once again !
Hello all readers,
Anne was hospitalized this morning.
This all started at 1am Tuesday (yesterday) morning. That's when she awoke with breathing difficulties at home. After a couple hours with no improvement we called the 'rescue' and I followed Anne into the ER. After ER found nothing they sent us home around 10am and we needed to try to catch up on our sleep.
We followed up with Dr. MacGillivray's office in the afternoon and he ordered a CT Scan. With that, we headed into Brighton Medical for the CT scan at approx 3pm. We understood that the CT would help rule out any blood clot problems in the chest area. Dr. MacGillivary left word that we were to stay at Brighton until he had a chance to call and speak with Anne directly, however he was still in surgery. At about 7pm he was still busy in surgery, so his office sent us a message saying that he wanted Anne to go to the ER. We headed to the ER and then Anne was admitted to the hospital from there by 1am.
The word on the CT scan is that there are problems in Annes chest. There are questions about a potential for pnemonia in her lungs, also fluid around her lungs, and also for fluid around her heart. It's now about 1pm and we don't have a plan of attack yet.
Dr. MacGillivray was here this morning and told Anne this was unusual for this recovery. He referred us to a cardiologist due to his concern about the fluid around the heart. The cardiologist was here and ordered an EKO Cardiogram, to get more information about the fluid around Anne's heart. We do not still have any results from that or a plan of attack as of yet.
Anne is resting, I would say less than comfortably, because she can only get small breaths. She isn't visibly complaining or visibly in trouble, but I know she would be much happier if she could take a deep breath. She's also be happier if we had a diagnosis and a plan. Before much longer we should know what might happen from here on.
The cardiologist just told me that if there is much fluid around the heart that they can go in with a needle to drain that. I asked him about the pneumonia and fluid around the lung linings. He said that there was nothing crucial regarding those concerns. He said his team of residents will be making their rounds shortly, and thay they hoped to have the results of the EKO cardiogram by then.
Anne was hospitalized this morning.
This all started at 1am Tuesday (yesterday) morning. That's when she awoke with breathing difficulties at home. After a couple hours with no improvement we called the 'rescue' and I followed Anne into the ER. After ER found nothing they sent us home around 10am and we needed to try to catch up on our sleep.
We followed up with Dr. MacGillivray's office in the afternoon and he ordered a CT Scan. With that, we headed into Brighton Medical for the CT scan at approx 3pm. We understood that the CT would help rule out any blood clot problems in the chest area. Dr. MacGillivary left word that we were to stay at Brighton until he had a chance to call and speak with Anne directly, however he was still in surgery. At about 7pm he was still busy in surgery, so his office sent us a message saying that he wanted Anne to go to the ER. We headed to the ER and then Anne was admitted to the hospital from there by 1am.
The word on the CT scan is that there are problems in Annes chest. There are questions about a potential for pnemonia in her lungs, also fluid around her lungs, and also for fluid around her heart. It's now about 1pm and we don't have a plan of attack yet.
Dr. MacGillivray was here this morning and told Anne this was unusual for this recovery. He referred us to a cardiologist due to his concern about the fluid around the heart. The cardiologist was here and ordered an EKO Cardiogram, to get more information about the fluid around Anne's heart. We do not still have any results from that or a plan of attack as of yet.
Anne is resting, I would say less than comfortably, because she can only get small breaths. She isn't visibly complaining or visibly in trouble, but I know she would be much happier if she could take a deep breath. She's also be happier if we had a diagnosis and a plan. Before much longer we should know what might happen from here on.
The cardiologist just told me that if there is much fluid around the heart that they can go in with a needle to drain that. I asked him about the pneumonia and fluid around the lung linings. He said that there was nothing crucial regarding those concerns. He said his team of residents will be making their rounds shortly, and thay they hoped to have the results of the EKO cardiogram by then.
Saturday, June 26, 2010
CANCER FREE !!!
Good morning friends,
We saw the surgeon (Dougald MacGillivray) and the oncologist (Kurt Ebrahim) late this week and we're so happy to let you all know, Anne is cancer free !!
Dr. Ebrahim gave us the news as he helped us interpret the pathology reports that came out following surgery. He explained that the tumor (removed) had been reduced by the treatments to 1.5cm.. He said there were 15 lymphnodes in the region near the tumor, only one of those contained cancer, and that six of those were surgically removed.
We're so grateful we were able to seek and find these specific doctors early on. Dr. Ebrahim gave us undivided attention all along and because of his manner we just had faith in him because we were so comfortable in his care. If you remember, he told us he would go after this cancer with 'curative intent', and that it would be painful and sickening. He sure was right about that. And the surgeon (man of few words) was as metticulous and thourough as advertised.
It's just amazing to think that the tumor was found on Dec. 22, and here we are six months later, cancer free, this considering the ordeals that so many folks go thru with cancer treatment. We feel so blessed. This was no walk in the park, but comparitively speaking, we are just soooo fortunate.
Anne is doing better all the time now, however she is having troubles eating and digesting many foods. She wakes up coughing and choking many nights. She has stopped doing the tube feedings overnight, and she eats pretty much as she pleases, just smaller portions. She is trying to build up some endurance and is tired most of the day.
She has a real hard time breathing when she wakes up in the morning. Dr. Ebrahim explained this. She has alot more anatomy in her chest cavity now, because her stomach is taking up some of the space in there along side her lungs, sharing that space. It's important for her to continue to do the breathing exercises to help with lung capacity, etc..
It's going to be a long slow recovery, up to six months before she is anywhere near back to normal. She gets tired easily, needs alot of rest, and she needs to do alot of walking exercise now.
I know you will all be happy to read this news, and we thank all of you for reading and praying as you have done. Anne really appreciates all of your support, and again, can't tell you how helpful for her to know there was an army of you friends out there thinking of her during the past 6 months. Thank you so very much.
We saw the surgeon (Dougald MacGillivray) and the oncologist (Kurt Ebrahim) late this week and we're so happy to let you all know, Anne is cancer free !!
Dr. Ebrahim gave us the news as he helped us interpret the pathology reports that came out following surgery. He explained that the tumor (removed) had been reduced by the treatments to 1.5cm.. He said there were 15 lymphnodes in the region near the tumor, only one of those contained cancer, and that six of those were surgically removed.
We're so grateful we were able to seek and find these specific doctors early on. Dr. Ebrahim gave us undivided attention all along and because of his manner we just had faith in him because we were so comfortable in his care. If you remember, he told us he would go after this cancer with 'curative intent', and that it would be painful and sickening. He sure was right about that. And the surgeon (man of few words) was as metticulous and thourough as advertised.
It's just amazing to think that the tumor was found on Dec. 22, and here we are six months later, cancer free, this considering the ordeals that so many folks go thru with cancer treatment. We feel so blessed. This was no walk in the park, but comparitively speaking, we are just soooo fortunate.
Anne is doing better all the time now, however she is having troubles eating and digesting many foods. She wakes up coughing and choking many nights. She has stopped doing the tube feedings overnight, and she eats pretty much as she pleases, just smaller portions. She is trying to build up some endurance and is tired most of the day.
She has a real hard time breathing when she wakes up in the morning. Dr. Ebrahim explained this. She has alot more anatomy in her chest cavity now, because her stomach is taking up some of the space in there along side her lungs, sharing that space. It's important for her to continue to do the breathing exercises to help with lung capacity, etc..
It's going to be a long slow recovery, up to six months before she is anywhere near back to normal. She gets tired easily, needs alot of rest, and she needs to do alot of walking exercise now.
I know you will all be happy to read this news, and we thank all of you for reading and praying as you have done. Anne really appreciates all of your support, and again, can't tell you how helpful for her to know there was an army of you friends out there thinking of her during the past 6 months. Thank you so very much.
Friday, June 18, 2010
Ninth Day at Home, cont'd
OK
The Dr. MacGillivary's resident doctors have been here, and they were pleased with the blood work, and therefore don't think Anne was dehydrated or under nourished. Even so, we'll stay here until the fluid bag is empty.
They don't know why Anne's blood pressure was low this morning however. They guess it was due to doing too much in the hot sun. Anne was only outside for 5-10 minutes tho, so I think Anne's sickness this morning is mysterious, and I do think she was dehydrated to some extent. Maybe not under nourished tho, because the blood tests would have indicated that.
They are going to send us home with a new script, for Reglan. It is something that will move matter thru Anne's intestines faster. This may alleviate the belly pain Anne has been feeling this past week.
The doctors have set our expectations a little lower going forward too. Here we were expecting Anne to be a bit better every day, and to start flying around soon. They told us that isn't completely out of line, but that Anne may take a couple of months to get better, and to fully expect a lousy day occasionally.
So,,, shortly we'll be out of here, and back on the way home once again. When Anne is allowed soft foods again they said we should avoid fruit for awhile. No more single servings of applesauce or pears. They also want us to increase the amount of tube feeding again, and we'll get specific directions on how much how fast. She was also advised to try increasing the angle of her sleeping incline, and to do more walking than she has been doing.
Thanks for reading all, and thank you for your prayers and well wishes for Anne.
PS The residents said that in six months Anne will be eating and drinking just about anything she wants, just like before. We weren't too sure what to expect with that, what with no esophagus and all. They said in six months Anne won't even know she had surgery. I hope they are right !!
t
The Dr. MacGillivary's resident doctors have been here, and they were pleased with the blood work, and therefore don't think Anne was dehydrated or under nourished. Even so, we'll stay here until the fluid bag is empty.
They don't know why Anne's blood pressure was low this morning however. They guess it was due to doing too much in the hot sun. Anne was only outside for 5-10 minutes tho, so I think Anne's sickness this morning is mysterious, and I do think she was dehydrated to some extent. Maybe not under nourished tho, because the blood tests would have indicated that.
They are going to send us home with a new script, for Reglan. It is something that will move matter thru Anne's intestines faster. This may alleviate the belly pain Anne has been feeling this past week.
The doctors have set our expectations a little lower going forward too. Here we were expecting Anne to be a bit better every day, and to start flying around soon. They told us that isn't completely out of line, but that Anne may take a couple of months to get better, and to fully expect a lousy day occasionally.
So,,, shortly we'll be out of here, and back on the way home once again. When Anne is allowed soft foods again they said we should avoid fruit for awhile. No more single servings of applesauce or pears. They also want us to increase the amount of tube feeding again, and we'll get specific directions on how much how fast. She was also advised to try increasing the angle of her sleeping incline, and to do more walking than she has been doing.
Thanks for reading all, and thank you for your prayers and well wishes for Anne.
PS The residents said that in six months Anne will be eating and drinking just about anything she wants, just like before. We weren't too sure what to expect with that, what with no esophagus and all. They said in six months Anne won't even know she had surgery. I hope they are right !!
t
Ninth Day at Home, back to the ER, Fri 6/18, 3pm
Hello everybody,
It has been a tough week at home for Anne. She has had several things go wrong, and just hasn't been able to bounce back as she would have liked. Here's an abreviated list of things that have happened to Anne since she got home.
As it turned out, she wasn't able to tolerate any soft foods, so on Tuesday (or was it Weds?) she was put back on clear liquids only, and the rate on her tube feeding was reduced from 60 to 30. So, instead of having 3 cans of food via tube (in 12 hours overnight) she has only been getting 1 1/2 cans.
Anne had some periods of belly pain this week. She has had to grin and bear it, or sit on the toilet for some time to get rid of it.
She sleeps on the incline pretty well, but wakes up to a cough, which develops into vomitting which empties her stomach every morning (except for Weds and Fri). She has vomitted once, sometimes twice daily since coming home.
Anne's stomach incision developed and ooozed puss from a small hole between where 2 of the staples were removed(she may have pulled it apart when vomitting. That is now being dressed and watched daily. The 'wound lady' says it shouldn't develop into a problem (knock on wood). It's a very small hole, not deep, and looks good now.
Her neck incision, healing from the inside out, is dressed by a visiting nurse everyday, and looks good. With this tho, the skin on her neck around the incision is irritated and sore due to the tape being applied and removed every day. We opted to use 'montgomery straps' to hold the dressing in place the past 2 days which has been a blessing. With these, tape stays on, and doesn't have to be put on and pulled off each day. That was a great suggestion from a friend, and very helpful.
Anne's bowell movements have been soft or liquid since coming home.
Since coming home Anne has not been able to take a good deep breath due to what we think is a pulled muscle in her back, probably due to the vomitting. That is why we spent last Saturday night in the ER. We wonder if there isn't a broken rib in her back, but it didn't show on the chest xray done in the ER. She winces in pain when she tried a deep breath.
Her shoulder, which was sore from manuvering around in the hospital bed, is feeling better now.
She has had a sore throat from vomitting.
Did I mention that we are back in the ER right now????
Anne had 3 nurses scheduled to come to the house today, one for the neck dressing, one for PT, and one for O(occupational)T. When the 'wound lady' came at 8:45 Anne was doing well. Then, as Anne walked around in the yard (10am) with Amber (PT) Anne began feeling weak and sick. Anne's BP was 88 over 60, and her oxygen level was down to 89. We called Dr. MacGillivrays nurse Jenn on the phone (as we have each day this week) and we determined that Anne was probably dehydrated and possibly undernourished. Keep in mind, she has had reduced tube feeding overnight for the past 2-3 nights, and been reduced again to clear liquids only (popsicles, chicken stock, jello, and water) during the day for the past 2-3 days. She was initially told to sip the clears slowly so as not to cough/vommit, and today they said she should have been told to 'push' them so as to drink a gallon a day. Those specific orders weren't clearly given the other day.
So now we're in the ER being hydrated. Anne is sleeping with the IV running, and I look forward to her waking and feeling alot better shortly.
The concern is that she cannot seem to keep any nutrition down, and that she could not tollerate soft food. We need to get past that. The art of eating without an esophagus is something Anne hasn't mastered yet, but she will. We don't know whether she'll be released from here today, or possibly be admitted again. Anne will be disappointed if she is admitted again and I don't look forward to that news, however, we need to do the right thing to get this situation turned around so Anne can recover. She is in good hands. More later...thanks for reading and thanks for your prayers.
It has been a tough week at home for Anne. She has had several things go wrong, and just hasn't been able to bounce back as she would have liked. Here's an abreviated list of things that have happened to Anne since she got home.
As it turned out, she wasn't able to tolerate any soft foods, so on Tuesday (or was it Weds?) she was put back on clear liquids only, and the rate on her tube feeding was reduced from 60 to 30. So, instead of having 3 cans of food via tube (in 12 hours overnight) she has only been getting 1 1/2 cans.
Anne had some periods of belly pain this week. She has had to grin and bear it, or sit on the toilet for some time to get rid of it.
She sleeps on the incline pretty well, but wakes up to a cough, which develops into vomitting which empties her stomach every morning (except for Weds and Fri). She has vomitted once, sometimes twice daily since coming home.
Anne's stomach incision developed and ooozed puss from a small hole between where 2 of the staples were removed(she may have pulled it apart when vomitting. That is now being dressed and watched daily. The 'wound lady' says it shouldn't develop into a problem (knock on wood). It's a very small hole, not deep, and looks good now.
Her neck incision, healing from the inside out, is dressed by a visiting nurse everyday, and looks good. With this tho, the skin on her neck around the incision is irritated and sore due to the tape being applied and removed every day. We opted to use 'montgomery straps' to hold the dressing in place the past 2 days which has been a blessing. With these, tape stays on, and doesn't have to be put on and pulled off each day. That was a great suggestion from a friend, and very helpful.
Anne's bowell movements have been soft or liquid since coming home.
Since coming home Anne has not been able to take a good deep breath due to what we think is a pulled muscle in her back, probably due to the vomitting. That is why we spent last Saturday night in the ER. We wonder if there isn't a broken rib in her back, but it didn't show on the chest xray done in the ER. She winces in pain when she tried a deep breath.
Her shoulder, which was sore from manuvering around in the hospital bed, is feeling better now.
She has had a sore throat from vomitting.
Did I mention that we are back in the ER right now????
Anne had 3 nurses scheduled to come to the house today, one for the neck dressing, one for PT, and one for O(occupational)T. When the 'wound lady' came at 8:45 Anne was doing well. Then, as Anne walked around in the yard (10am) with Amber (PT) Anne began feeling weak and sick. Anne's BP was 88 over 60, and her oxygen level was down to 89. We called Dr. MacGillivrays nurse Jenn on the phone (as we have each day this week) and we determined that Anne was probably dehydrated and possibly undernourished. Keep in mind, she has had reduced tube feeding overnight for the past 2-3 nights, and been reduced again to clear liquids only (popsicles, chicken stock, jello, and water) during the day for the past 2-3 days. She was initially told to sip the clears slowly so as not to cough/vommit, and today they said she should have been told to 'push' them so as to drink a gallon a day. Those specific orders weren't clearly given the other day.
So now we're in the ER being hydrated. Anne is sleeping with the IV running, and I look forward to her waking and feeling alot better shortly.
The concern is that she cannot seem to keep any nutrition down, and that she could not tollerate soft food. We need to get past that. The art of eating without an esophagus is something Anne hasn't mastered yet, but she will. We don't know whether she'll be released from here today, or possibly be admitted again. Anne will be disappointed if she is admitted again and I don't look forward to that news, however, we need to do the right thing to get this situation turned around so Anne can recover. She is in good hands. More later...thanks for reading and thanks for your prayers.
Monday, June 14, 2010
Fifth Day at Home, 6/14, 11:30am, (trip to ER on Sat.)
Hi Friends,
Anne was released on Thursday. It was a very long day with many many hospital associates needing to see Anne before she left. It seems like they came out of the woodwork, and that it would never end. Very tiring. Finally we got home late afternoon. By the time they let her go she was ready to 'climb the walls'.
It has been challenging and tiring at home, but we are starting to feel better in terms of having energy. For the first 2 days we were both glad to be here, but completely exhausted it seemed. Some sort of 'crash' from an adrenaline rush of the past 2 1/2 weeks I suppose.
Anne has had some difficulty eating etc.. She's using the feeding tube overnight along with eating regular soft foods during the day. The first 3 mornings Anne woke up coughing and vomitting so we thought we'd have to contact the surgeon today, however, this morning she was fine. Progress is being made.
We had to make a trip to the emergency room at 6pm Saturday. She was having stabbing back pains and back spasms. We thought she may have pulled a muscle while coughing in bed, and we told them so. They checked her for everything under the sun however, and then sent us home after mid-night thinking Anne had a pulled muscle. They needed to rule out numbers of other things. Many tests, including EKG, Chest xray, and Catscan were done. There was no fluid around Anne's lungs, and no blood clot (which was their primary concern). It was exhausting, and as a result we were both pretty much 'junk' all day Sunday. We were unable to attend church, and it was good that no one came by on Sunday. I'm not sure Anne would have attended church anyhow, she still has an awful lot going on in terms of recovery.
Nurses come to the house frequently. The first one (Laurel) got us going with using the feeding tube Thurdsday evening.
Anne's dressing on her neck wound is changed daily by one of a number of visiting nurses that have come here since Thursday. The wound looks good as it heals from the inside out.
A physical therapist (Amber) comes twice a week, and yesterday was very helpful in terms of Annes back spasms. She returns on Friday.
Anne isn't walking as much as she did in the hospital with the back spasms quite troublesome and painful. With these, she moves around slowly, but she is getting better day by day. She is keeping up with various exercises given to her by Amber.
Anne loves her new mattress and adjustable bed. It was fit right into our regular King bed, next to my mattress. It's working out well for her.
Anne wants to let you know she is getting better, however healing much more slowly than she expected.
Anne was released on Thursday. It was a very long day with many many hospital associates needing to see Anne before she left. It seems like they came out of the woodwork, and that it would never end. Very tiring. Finally we got home late afternoon. By the time they let her go she was ready to 'climb the walls'.
It has been challenging and tiring at home, but we are starting to feel better in terms of having energy. For the first 2 days we were both glad to be here, but completely exhausted it seemed. Some sort of 'crash' from an adrenaline rush of the past 2 1/2 weeks I suppose.
Anne has had some difficulty eating etc.. She's using the feeding tube overnight along with eating regular soft foods during the day. The first 3 mornings Anne woke up coughing and vomitting so we thought we'd have to contact the surgeon today, however, this morning she was fine. Progress is being made.
We had to make a trip to the emergency room at 6pm Saturday. She was having stabbing back pains and back spasms. We thought she may have pulled a muscle while coughing in bed, and we told them so. They checked her for everything under the sun however, and then sent us home after mid-night thinking Anne had a pulled muscle. They needed to rule out numbers of other things. Many tests, including EKG, Chest xray, and Catscan were done. There was no fluid around Anne's lungs, and no blood clot (which was their primary concern). It was exhausting, and as a result we were both pretty much 'junk' all day Sunday. We were unable to attend church, and it was good that no one came by on Sunday. I'm not sure Anne would have attended church anyhow, she still has an awful lot going on in terms of recovery.
Nurses come to the house frequently. The first one (Laurel) got us going with using the feeding tube Thurdsday evening.
Anne's dressing on her neck wound is changed daily by one of a number of visiting nurses that have come here since Thursday. The wound looks good as it heals from the inside out.
A physical therapist (Amber) comes twice a week, and yesterday was very helpful in terms of Annes back spasms. She returns on Friday.
Anne isn't walking as much as she did in the hospital with the back spasms quite troublesome and painful. With these, she moves around slowly, but she is getting better day by day. She is keeping up with various exercises given to her by Amber.
Anne loves her new mattress and adjustable bed. It was fit right into our regular King bed, next to my mattress. It's working out well for her.
Anne wants to let you know she is getting better, however healing much more slowly than she expected.
Wednesday, June 9, 2010
Sixteenth Day after Surgery, 7pm
Hello everybody,
Anne is being released tomorrow.
The first result for the c.diff infection came back negative today.
Her feeding tube was removed in the morning, and Anne ate small amounts of soft solid food all day. The tube is hooked up again for this overnight. Evening use of the feeding tube may continue at home. If she tollerates enough calories with the solid food while she's here, the tube may not be needed at home. This is to be determined before we leave tomorrow.
The dressing on her neck incision was changed by the wound specialist here this morning to determine the level of nursing care she will need for that when she is at home. They are using a dressing that will last 24 hours, twice as long as what has been used to date.
A mixup in meds this morning left her in bed for alot of today. It was a double dose of pain meds when she asked for anxiety meds, at least she thinks she asked for anxiety meds. Whatever,,,,, no worries on Anne's part.
Anne has some stomach pain from diarreah. The doctors aren't overly concerned with this, in hopes that the solid foods will resolve this shortly.
Anne continues to take laps around the floor on foot, but this is the first day with no tubes attached, none !!!!!!!!!
Nurse Nancy taught Anne to make a sundae with vanilla ice cream, peanut butter, and graham crackers stirred up together. I guess that was pretty good, but Anne couldn't finish all of it.
She is now having an egg salad sandwich, at least half of one.
Let's hope for the best for this overnight and tomorrow.
Thank you so much everyone for bein there.
Anne is being released tomorrow.
The first result for the c.diff infection came back negative today.
Her feeding tube was removed in the morning, and Anne ate small amounts of soft solid food all day. The tube is hooked up again for this overnight. Evening use of the feeding tube may continue at home. If she tollerates enough calories with the solid food while she's here, the tube may not be needed at home. This is to be determined before we leave tomorrow.
The dressing on her neck incision was changed by the wound specialist here this morning to determine the level of nursing care she will need for that when she is at home. They are using a dressing that will last 24 hours, twice as long as what has been used to date.
A mixup in meds this morning left her in bed for alot of today. It was a double dose of pain meds when she asked for anxiety meds, at least she thinks she asked for anxiety meds. Whatever,,,,, no worries on Anne's part.
Anne has some stomach pain from diarreah. The doctors aren't overly concerned with this, in hopes that the solid foods will resolve this shortly.
Anne continues to take laps around the floor on foot, but this is the first day with no tubes attached, none !!!!!!!!!
Nurse Nancy taught Anne to make a sundae with vanilla ice cream, peanut butter, and graham crackers stirred up together. I guess that was pretty good, but Anne couldn't finish all of it.
She is now having an egg salad sandwich, at least half of one.
Let's hope for the best for this overnight and tomorrow.
Thank you so much everyone for bein there.
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