Once we arrived at the hospital this morning (bright and early), Barry had a MUGA heart scan which took about an hour. He was then prepped for his chemoembolization procedure (cathetar-not a happy camper). He was wheeled away at 10 a.m. and I was told it would be about 3-4 hrs. until I saw him.
I went to the cafeteria for lunch where I noticed a bald woman wearing a baseball cap. As she walked past me, I asked if she was going through treatment. She told me that she had finished chemo and showed me her stubby hair that was growing. She was not going to be having any radiation. She agreed that you meet the nicest people while going through such an ordeal. A very nice woman.
At 2 p.m. Barry was brought to his room. Finally had a room by a window! Two beds in the room, and he is the only one in it. A nice private room. He had to stay on his back for 6 hrs. and keep his right leg straight. He was very uncomfortable in the liver area from the procedure, but was given morphine to relieve the pain. He said it would last a bit and then the pain would be back. Most of the afternoon he slept. He would occasionally wake up and I would give him some water. And of course, lots of vital signs being checked. The only time I left the room to get something for dinner, his doctor came to check on him. There was not much conversation this afternoon but I did enjoy the sound of his snoring. For me it meant that he was resting.
I left the hospital once he was able to get off of his back and onto his side. Had wanted to see him get out of bed but thought it best to get back to Tim. It was a change of shift for the nurses so it was going to be awhile for the nurse to come back and do that.
Thanks to Diane for taking Tim to band banquet tonight.
I'll be going back to hospital first thing in the morning to pick Barry up. I'm not sure what time he will be discharged.
Thanks to all for your continued support. I must say that this chemo treatment is not like the traditional chemo that he/we have had. He certainly is not able to get up and go to work right after it!
Tuesday, February 28, 2006
Sunday, February 26, 2006
A day to rest
One of the better things I did today was to take a 3 hr. nap! And I actually dreamed which made it that much better. Tim played some raquetball with his friends, and I took advantage and hopped into my bed. I love my naps.
Cooking beef stew in crock pot now. Can you smell it? Will probably be Tim's breakfast! He's like Barry, can eat dinner foods in the morning.
Barry remains positive for this new treatment on Tuesday. To see any shrinkage in the large tumor will be a blessing to us.
Cooking beef stew in crock pot now. Can you smell it? Will probably be Tim's breakfast! He's like Barry, can eat dinner foods in the morning.
Barry remains positive for this new treatment on Tuesday. To see any shrinkage in the large tumor will be a blessing to us.
Saturday, February 25, 2006
Tim's sleepover was a success. As usual, you would never know there were that many boys in the house. He had 3 friends actually spend the night. I went to bed before them, never heard a sound. In the morning Tim went to a referee training class which lasted all day. Now he is able to ref kids under the age of 14. He's looking forward to that. More cash in his pocket. Could actually ref games at the local indoor soccer field.
While Tim was at his class, Barry painted the hallway walls. And boy did they need it. It was the first time they had been done by us. They look wonderful. Barry's now inspired to do more walls shortly.
Barry got an unexpected phone call earlier in the day from his oncologist (neighbor of ours). He had been out of state at a seminar all week and was calling to see how the second opinion went. Pretty nice of him to call. They spoke for awhile and then Barry told him to contact the other doctor to go over the findings and recommendations. Which he did. It was like ESP when he called because Barry had joked about standing out by mailbox just to grab the dr. if he should "try" to leave his street this weekend! We told him that. So now Barry is confident about going to UPMC on Tuesday.
Well, I'm off to bed. Tim's already "napping" in his bed. A long day. No nap for me. Can't wait for tomorrow afternoon's nap...
While Tim was at his class, Barry painted the hallway walls. And boy did they need it. It was the first time they had been done by us. They look wonderful. Barry's now inspired to do more walls shortly.
Barry got an unexpected phone call earlier in the day from his oncologist (neighbor of ours). He had been out of state at a seminar all week and was calling to see how the second opinion went. Pretty nice of him to call. They spoke for awhile and then Barry told him to contact the other doctor to go over the findings and recommendations. Which he did. It was like ESP when he called because Barry had joked about standing out by mailbox just to grab the dr. if he should "try" to leave his street this weekend! We told him that. So now Barry is confident about going to UPMC on Tuesday.
Well, I'm off to bed. Tim's already "napping" in his bed. A long day. No nap for me. Can't wait for tomorrow afternoon's nap...
Friday, February 24, 2006
To anonymous: THANKS for that beautiful poem.
Barry is scheduled to have his first treatment on Tuesday morning, bright and early. He will be having a muga scan (heart tests) which will be used as a baseline report.
***Before a patient receives their first dose of Adriamycin, a MUGA scan is usually performed, both to establish a baseline LVEF, and to rule out pre-existing cardiac disease. The MUGA scan is then repeated after a certain amount of Adriamycin is administered (400 milligrams of Adriamycin per square meter of surface area – a number determined by the patient’s height and weight). More MUGA scans are repeated periodically, as more Adriamycin is given. If the patient’s LVEF begins to decrease, then the doctor and patient must reconsider the risks and benefits of continuing with Adriamycin in view of this apparent early cardiac toxicity.
Thus, the MUGA scan plays an important role in allowing Adriamycin to be used in the treatment of cancer, while minimizing the risk of cardiac toxicity.**
The above is from an article we found on the internet>>>>>>>>>
I will be taking that day off. He will have to stay overnight. He doesn't want me to stay in the city, wants me to go home and be with Tim instead. Time will tell. Since it's the first treatment you don't know how you will do.
Tim's got a few friends here tonight for sleepover. Just wanted he want to celebrate his birthday. Must be the age, to keep birthdays low key.
Barry is scheduled to have his first treatment on Tuesday morning, bright and early. He will be having a muga scan (heart tests) which will be used as a baseline report.
***Before a patient receives their first dose of Adriamycin, a MUGA scan is usually performed, both to establish a baseline LVEF, and to rule out pre-existing cardiac disease. The MUGA scan is then repeated after a certain amount of Adriamycin is administered (400 milligrams of Adriamycin per square meter of surface area – a number determined by the patient’s height and weight). More MUGA scans are repeated periodically, as more Adriamycin is given. If the patient’s LVEF begins to decrease, then the doctor and patient must reconsider the risks and benefits of continuing with Adriamycin in view of this apparent early cardiac toxicity.
Thus, the MUGA scan plays an important role in allowing Adriamycin to be used in the treatment of cancer, while minimizing the risk of cardiac toxicity.**
The above is from an article we found on the internet>>>>>>>>>
I will be taking that day off. He will have to stay overnight. He doesn't want me to stay in the city, wants me to go home and be with Tim instead. Time will tell. Since it's the first treatment you don't know how you will do.
Tim's got a few friends here tonight for sleepover. Just wanted he want to celebrate his birthday. Must be the age, to keep birthdays low key.
Thursday, February 23, 2006
Second opinion is in
Barry heard from UPMC today. Here are the findings:
He has a very rare type of liver cancer called Epithelioid hemangioendothelioma (EHE), of which they've seen only 7 cases of it. The doctors have recommended that he start the treatment I wrote about, chemoembolization, next week. The chemo drug that will be used will be adriamycin, the same drug that I was given for my breast cancer. Best known for it's color, looks like red koolaid.
Before anything happens, we will be in touch with Barry's oncologist to make sure that he concurs with this decision. We will be waiting for more detailed information, such as date and time of treatment.
If you google search EHE liver cancer you are able to read a lot of information. Information that we will be absorbing in the days to come. One thing I've learned this past year is this: lots of new words about the oncology field. I have to think that it's for a reason, to touch others and to show strength to others.
He has a very rare type of liver cancer called Epithelioid hemangioendothelioma (EHE), of which they've seen only 7 cases of it. The doctors have recommended that he start the treatment I wrote about, chemoembolization, next week. The chemo drug that will be used will be adriamycin, the same drug that I was given for my breast cancer. Best known for it's color, looks like red koolaid.
Before anything happens, we will be in touch with Barry's oncologist to make sure that he concurs with this decision. We will be waiting for more detailed information, such as date and time of treatment.
If you google search EHE liver cancer you are able to read a lot of information. Information that we will be absorbing in the days to come. One thing I've learned this past year is this: lots of new words about the oncology field. I have to think that it's for a reason, to touch others and to show strength to others.
Tuesday, February 21, 2006
Faith
The following is a portion of an email I got today from a woman I know at my job. I had emailed her about Barry's appointment yesterday. And this is her powerful message to and for me:
Our pastor did his sermon on Sunday about worry. It was very good. The key points were:
1. Focus on your blessings, not your wants.
2. Focus on your faith, not your fears.
3. Focus on the important people in your life.
He said there is not room in our heads or hearts for both worry and
faith. He said we should have faith that the Lord will take care of us.
Once we have established a strong faith, we don't need to worry.
Our pastor did his sermon on Sunday about worry. It was very good. The key points were:
1. Focus on your blessings, not your wants.
2. Focus on your faith, not your fears.
3. Focus on the important people in your life.
He said there is not room in our heads or hearts for both worry and
faith. He said we should have faith that the Lord will take care of us.
Once we have established a strong faith, we don't need to worry.
Monday, February 20, 2006
Second opinion with oncologist in Pittsburgh
Barry and I went to see the doctor at UPMC in Pittsburgh this morning. Barry's type of cancer is rare and after looking over all of the documentation and results, the doctor will be presenting Barry's case to a panel of doctors this Wednesday for feedback. I am encouraged in the fact that this hospital deals specifically with cancer of the liver. Unlike my breast cancer and other cancers, surgery is not an option for us since the cancer was located near the lungs also. The focus for us are the tumors in the liver area, two of which are large with other small ones. This doctor is leaning towards the following treatment: here is a website to explain the treatment:
http://www.radiologyinfo.org/content/interventional/chemoembol.htm
The procedure would require Barry to be hospitalized overnight. It is done by interventional radioligists. Our local hospitals do not do this, done in Pittsburgh. He would then come home the next day. Usually sick for that first week. Repeated treatment every 8 weeks. Direct the chemo into the tumor through cathetar and shoot some kind of beeds to stop the blood flow to tumor.
He also had another CT scan today just to be right up to date. By Friday we will hear from this doctor with a course of treatment. Before doing anything, we will talk to our present doctor.
We've absorbed a lot of information today, and you know it does make sense. Just what the thalidomide would do, stop blood flow. Barry and I continue to be positive, know this is not a cure but a treatment. And he has desire to continue to work through all of this. He's got such a work ethic which I do believe is theraputic.
Thanks to all for your continued support and prayers. And thank you Lisa for taking such good care of Tim today while we were in the city.
http://www.radiologyinfo.org/content/interventional/chemoembol.htm
The procedure would require Barry to be hospitalized overnight. It is done by interventional radioligists. Our local hospitals do not do this, done in Pittsburgh. He would then come home the next day. Usually sick for that first week. Repeated treatment every 8 weeks. Direct the chemo into the tumor through cathetar and shoot some kind of beeds to stop the blood flow to tumor.
He also had another CT scan today just to be right up to date. By Friday we will hear from this doctor with a course of treatment. Before doing anything, we will talk to our present doctor.
We've absorbed a lot of information today, and you know it does make sense. Just what the thalidomide would do, stop blood flow. Barry and I continue to be positive, know this is not a cure but a treatment. And he has desire to continue to work through all of this. He's got such a work ethic which I do believe is theraputic.
Thanks to all for your continued support and prayers. And thank you Lisa for taking such good care of Tim today while we were in the city.
Sunday, February 19, 2006
Barry once again accused me of "snoring" last night! Can't believe that. Boy, this hotel bed just might be too comfy... Leaving to get Tim shortly. Goal is to be on the road home by noon.
We were on the road home by 11 a.m. Took us about 6 hrs. 45 mins. to get home. We had such a great time in such a shor time. The only regret was we were not able to buy pizzas to take home with us. The restaurants were not open in time. We kick ourselves that we didn't go out last night and get them. The next people who come to visit us from Long Island need to bring us some pizzas!!
Once we arrived home, the boys ate their White Castle burgers. Happy campers. I had some shrimp fried rice. Barry's resting now and Tim is in his room doing some artwork on his pc.
Barry's appt. is at 9 a.m. so we should be on the road at about 7 a.m. We had paperwork overnighted to us yesterday for the appt. Looking forward to seeing what the doctors say in Pittsburgh. Tim will be staying with his friend while we go to appt.
Again, a great 24 hrs. You can't take those memories away from us. I hope you enjoy a few of the pictures I took. It was nice to get away but we do love our country living. Too much traffic in New York.
We were on the road home by 11 a.m. Took us about 6 hrs. 45 mins. to get home. We had such a great time in such a shor time. The only regret was we were not able to buy pizzas to take home with us. The restaurants were not open in time. We kick ourselves that we didn't go out last night and get them. The next people who come to visit us from Long Island need to bring us some pizzas!!
Once we arrived home, the boys ate their White Castle burgers. Happy campers. I had some shrimp fried rice. Barry's resting now and Tim is in his room doing some artwork on his pc.
Barry's appt. is at 9 a.m. so we should be on the road at about 7 a.m. We had paperwork overnighted to us yesterday for the appt. Looking forward to seeing what the doctors say in Pittsburgh. Tim will be staying with his friend while we go to appt.
Again, a great 24 hrs. You can't take those memories away from us. I hope you enjoy a few of the pictures I took. It was nice to get away but we do love our country living. Too much traffic in New York.
Saturday, February 18, 2006
A great day in Long Island
We left Pennsylvania at 3 a.m. and arrived at our destination by 10 a.m. No problems with traffic at George Washington Bridge/Throgs Neck Bridge. Thank goodness. Barry did all the driving while Tim slept most of the way. As for me, I managed to cat nap often.
Our first stop was to get Dunkin Donuts. Checked into the hotel and then went to our favorite restaurant and enjoyed salad pizza. The best! Worth a 7 hr. trip. Took Tim to his friend's house where he will be staying overnight. Aren't we good parents to take him such a long trip for a sleepover. The boys were so excited. Told them to enjoy roaming the old neighborhood and showing Tim off. Will pick him up in the morning. It was so great seeing Toni, Alec, Barbara and Enrico. Tim may be going back for a visit this summer for a longer time.
We then went to see our neighbors, Pat and Stacey and their 2 children. They did a huge extension on their home and it's absolutely gorgeous. While there, another neighbor came to see us, Lorraine. Geez, everyone looks the same. Great seeing everyone.
Came back to hotel room by 3 p.m. and I rested for couple of hours. Barry had intended to but couldn't fall asleep. Said my snoring was too loud. Am sure he'll sleep good tonight. A long drive for him.
Met Vinnie and his wife Darlene for dinner. He was Barry's boss in Long Island who we've continued to keep in touch with. Had another great meal. Afterwards we went to White Castle (burger joint) to get some belly whoppers to take home. Also picked up some shrimp and pork fried rice at local Chinese restaurant. Am hoping to also bring back a couple of NY pizzas. Good food here but the traffic sucks. Miss my country roads.
As you can see, the hotel room has internet wireless connection. Took us awhile to get it connected but Barry never gives up.
His dr. appt. is 9 a.m. Monday. We hope to leave LI by noon tomorrow. And as I leave here I can once again say "I did everything I came to do, no regrets". Saw many good friends and was able to hug each and every one of them. A great day!
Our first stop was to get Dunkin Donuts. Checked into the hotel and then went to our favorite restaurant and enjoyed salad pizza. The best! Worth a 7 hr. trip. Took Tim to his friend's house where he will be staying overnight. Aren't we good parents to take him such a long trip for a sleepover. The boys were so excited. Told them to enjoy roaming the old neighborhood and showing Tim off. Will pick him up in the morning. It was so great seeing Toni, Alec, Barbara and Enrico. Tim may be going back for a visit this summer for a longer time.
We then went to see our neighbors, Pat and Stacey and their 2 children. They did a huge extension on their home and it's absolutely gorgeous. While there, another neighbor came to see us, Lorraine. Geez, everyone looks the same. Great seeing everyone.
Came back to hotel room by 3 p.m. and I rested for couple of hours. Barry had intended to but couldn't fall asleep. Said my snoring was too loud. Am sure he'll sleep good tonight. A long drive for him.
Met Vinnie and his wife Darlene for dinner. He was Barry's boss in Long Island who we've continued to keep in touch with. Had another great meal. Afterwards we went to White Castle (burger joint) to get some belly whoppers to take home. Also picked up some shrimp and pork fried rice at local Chinese restaurant. Am hoping to also bring back a couple of NY pizzas. Good food here but the traffic sucks. Miss my country roads.
As you can see, the hotel room has internet wireless connection. Took us awhile to get it connected but Barry never gives up.
His dr. appt. is 9 a.m. Monday. We hope to leave LI by noon tomorrow. And as I leave here I can once again say "I did everything I came to do, no regrets". Saw many good friends and was able to hug each and every one of them. A great day!
Friday, February 17, 2006
PET scan results
This morning we were given Barry's test results from his PET scan. The nodules on his lung remain very small/no change. One of the tumors near his liver remained about the same, and the other grew a bit. His doctor has recommended that Barry go to Pittsburgh to a cancer center for a second opinion. This has been arranged for Monday morning. All his scans will be sent there, along with his original biopsy results. The news wasn't as good as I thought it could be, but we don't always get what we want. I do feel good about going to Pittsburgh though. Had been a thought in my head to do.
After fighting illness this week, it's come down to a head cold/cough. Taking claritin D right now.
Been a long day. Signing off computer. Taking Tim to a sleepover tomorrow night: to his buddy's house in LI. He's quite excited.
After fighting illness this week, it's come down to a head cold/cough. Taking claritin D right now.
Been a long day. Signing off computer. Taking Tim to a sleepover tomorrow night: to his buddy's house in LI. He's quite excited.
Wednesday, February 15, 2006
Barry is having his 2nd PET/CT scan tomorrow morning. All my energy is being focused towards a positive outcome. I will be going with Barry to the dr's appt. on Friday for the test results. Barry continues to be so strong in going through these past months. One of the good guys.
I've been fighting sickness all week. Can't afford to get Barry sick. Three people at work have just gotten over being sick with sore throat/flu. I've been popping vitamin C, sudafed, tylenol and cough medicine. So far I'm winning. Plus I've been spraying lysol around the house.
We've decided to go away this weekend to Long Island. Just for a day. A chance for Tim to sleep over his friend's house. And a chance for Barry to have a change of scenery. He/we need that. Looking forward to seeing the old neighborhood and getting to taste some foods that we've missed.
I've been fighting sickness all week. Can't afford to get Barry sick. Three people at work have just gotten over being sick with sore throat/flu. I've been popping vitamin C, sudafed, tylenol and cough medicine. So far I'm winning. Plus I've been spraying lysol around the house.
We've decided to go away this weekend to Long Island. Just for a day. A chance for Tim to sleep over his friend's house. And a chance for Barry to have a change of scenery. He/we need that. Looking forward to seeing the old neighborhood and getting to taste some foods that we've missed.
Sunday, February 12, 2006
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