I would like to believe the 10/10/10 is a sign that the future will be full of good days and news. I suppose that I am holding onto anything that seems like HOPE.
Joe and I went to our church today at Eastminster Presbyterian. I am glad Joe went since he had skipped last week and he needed a spiritual boost. He did get it from Pastor Caleb Clark's Prayers for the People and Joe felt the words were meant for him. He was grateful for them and he told that to Caleb that also. It was wonderful to hear the well wishers from our congregation after the service but even more so, Joe felt love and compassion from the hugs. Thank you everyone who hugged Joe. It was exactly what he needed.
We had lunch at Enzo's in Tucker. Joe loves the small Bambino bowl of spaghetti with tomato sauce with two pieces of toasted bread with Sweet Iced Tea to drink. I had two slices of plain cheese pizza with my usual Diet Coke in a can in my hand. Enzo's is one of those comfortable local restaurants but it does have some ambiance with a great outdoor eating area. The inside has HD Flat screen TV's on three walls. The table tops are made of granite. Good prices and tasty food makes the place a success.
By the time we got home the Atlanta Falcons football game was on. They played the Cleveland Browns in Cleveland, They looked pretty good. Joe and I were to leave for the Braves game at 3PM when at 2:55 PM he tells me that he does not have the energy to go and to find someone to go with me. Imagine trying to do that in five minutes, Not! It was Joe's second day without the INCYTE so the dreaded fatigue has caught up with him. Joe watched the games from his favorite couch in the horizontal position with his dog laying beside him on the floor.
I drove myself over to Decatur MARTA station to hop on the train to Downtown since the baseball game was sold out. They told people who did not have a parking pass to ride MARTA. Naturally as I walked down the steps to the track, the train pulls away. DRAT! It was another 22 minutes before the next train came because of budget cuts and inefficiency. I got off at the Georgia State Station to walk the mile to the stadium since the Braves Shuttle from Five Points is slow and not in a good location after getting off the train. I did not make it there in time for the first pitch but at least I got to see Tim Hudson get out of a nasty jam in the first inning. With the Braves missing five key players, it would take a miracle for the team to make it to the next round. The crowd was enthusiastic and the Braves almost pulled it out. If Billy Wagner, our closer, had not gotten hurt at the last game, I believe that we would have won. Conrad is the GOAT again with three errors which shows how badly we miss Prado. Oh, well, I still enjoyed the game and the crowd. I kept in touch with Joe via text messaging. He texted me that he still wanted to meet for dinner at Capozzis even though our friend, Tracy Minich, was not going to make it since she was late leaving Southern Alabama. I got there about 8:45 PM and Joe was already there waiting in his truck for me to arrive. We had a lovely quiet dinner with the piano player playing tunes in the background.
Tomorrow we leave for Houston. On Tuesday Joe starts the R-FCM chemotherapy for attaching his Mantle Cell Lymphoma. Good thoughts and prays are appreciated and pray for the doctors and medical staff also. Joe is very quiet and I hope that I am giving him the support he needs.
Ciao!
Bonnie
MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11
Sunday, October 10, 2010
Friday and Saturday, 10/8 and 10/9 Calm before the storm
Thank you to all the people who have sent me e-mails, posted on facebook and made comments on this blog site. It helps me put things into perspective and assist in getting my emotions out of high gear to low gear.
On Thursday I fired off an e-mail to Dr. Keating and Dr. Badoux at MDACC asking more questions. Some of the questions were straight forward. One of which whether Joe to not do any treatment and just stay on INCYTE and about the stem cell transplant.
Dr. Badoux replied, "Joe will need chemotherapy prior to transplantation. We can always organize a transplant appointment for consultation and typing when he is here.
Mantle cell lymphoma is a heterogeneous disease and the prognosis is not poor for everyone! There is a good chance of response with treatment and I would not recommend doing nothing."
Dr Badoux comments gave me confidence plus along with the massive amount of reading I did, I truly believe that it is the best option at this time. I did ask him to set up a transplant consultation while we are there this coming week as well as typing done. The articles I read about the R-FCM combochemotherapy is that it is effective and that it can put the disease into remission for awhile. But, it will come back. Each time they do it after a remission period it is less effective. Joe will have four days of chemo this week then will have four days very month for up to six months. It is possible for it to have effect after three cycles. Some patients have had some serious side effects but MDACC has a proven treatment for each of them. Joe and I read some blogs about three patients adventures over a six months and later period of time. Knowing somewhat to expect is helpful.
I told Joe Thursday night at dinner at Chili's of the new diagnosis and what I had found out so far about it. I gave him the hard truth with of course some tears coming from me. Joe handled the news gallantly and brave. It is a blessing that he trusts me so much and that he knows with all his heart and mind that I will leave no stone unturned and fight for him with all my heart and mind. What a man! He is my rock on earth and gives me the courage to do whatever I think is the right thing. While we were there, the squealing in my eyes from the new hearing aids went to the painful stage. Joe could hear them from across the table with all the noise level in the bar area. It is no wonder thay I did not throw them against the wall. We sit in the bar area of Chili's since it is where we get the best service.
On Friday after my MRI, Joe and I went back to COSTCO in Dunwoody to the hearing aid department for the second day in a row. The day before I told them to remove Program 2 and put Program 1 back down to the original level. Well, they did take off Program 2 but they INCREASED the level of Program 1 that was already awful and made it TORTURE! Now, it is down to an acceptable level without the squealing. If it fails again, I will turn these in and get my money back and try a different model.
Since we were at COSTCO, I enticed Joe to buy the 55 inch HD LCD TV that was on sale for $998. The monstrous rear projection TV that is in the living room where Joe prefers to stretch out was fuzzy and we had gotten spoiled by the LCD TV in the den. With Joe recuperating from chemo and the continuing chemo for six months, I wanted him to have a great viewing experience and now he will. Now we have to find time to set it up.
Joe is now down to zero INCYTE and has tapered off of it quite well with additional tiredness but we expected that. Joe keeps saying to others that it proves the INCYTE really works at improving Quality of Life.
IN the last two weeks I have made sure that Joe and I go out to our favorite restaurants and he enjoys his favorite foods. It has been a very "rich" experience and Joe has really gotten his full. I wanted him to eat really good so his stamina would be better. Friday night we hit the Atlanta Fish Market where we had not been since 2/15/2008. The Buckhead Life Restaurant Chain has sent me a $25 off gift card for October so we took advantage of that. After cashing that in, they gave us another $25 gift card for November, They have some of our favorite nice restaurants. Joe had 1.5 pound fresh lobster and I had a lobster mixed scampi. We shared some velvety smooth creamy mashed potatoes and fresh tender green beans. Terrific meal and service. We will not stay away so long next time.
We came home to watch the Braves play the Giants. It was not fun watching the game since at the bottom of the 7th it was 4-1 and the Braves looked horrible. It was more than I could bear. We were both tired since it was late with them playing on the West Coast, so we went to bed thinking for sure, our Bravos would lose BUT......shockingly to us, we found out our Bravos won in 11 innings 5-4. They had tied it up in the 8th. So when we attend the game tomorrow (SUNDAY) at Turner Field the series will be tied. The Braves are really a miracle team with all their injuries of key players like Chipper and Prado. Joe and I will enjoy the day tomorrow. Our seats are in the upper level third base side above 3rd base in the 8th row. I will wear my big red hat which puts me as Bonnie in perfect form.
The steroids that I am taking for my right shoulder is suppose to make me stay awake but it has done the opposite. I suppose that the meds have reduced the pressure on the shoulder which has been more comfortable to sleep. I am so sound asleep and I have been sleeping late. What a huge blessing this is, since I am not laying awake thinking the worse of everything. It also has healed the sores in my mouth from the stress. Who would have thunk!
What a beautiful warm fall Saturday in Georgia to drive to Dahlonega to see Emily Bennett, our next door neighbor's daughter, compete in her first Equestrian Show as a freshman at North Georgia College. On the way there we found a BBQ place attached to a gas station on Highway 9 just north of town called Smokin' Gold BBQ. With some friendly North Georgia ladies running the place they were so sweet. There was a sign announcing their special of 1/3 pound of Burnt End with sides and a drink. Joe and I usually order pulled pork. I asked what was their best BBQ and she said the Beef Brisket. What is "burnt end?" It is marinated brisket cooked in a smoker, then marinated again, and cooked some more in the smoker. The fat is caramelized with no fat showing and black on all sides. She gave Joe and I a chunk to taste and OH MY! It was sensational with my taste buds begging for more. Joe was sold too but we ordered the smaller sandwich which was plenty big. All around the room they displayed the trophies they have won and there are a bunch. It is worth a trip t take especially if you are in the Dahlonega area.
We found Tiffany Farms which is northwest of Dahlonega Square and Joe parked his beloved bright red Ford F150 pick up on the farm owner's field along with the rest of the crowd for the Equestrian Show competition hosted by North Georgia College. With the sky, bright blue and the air warm we had arrived just in time for Emily's event. We found her parents and Grandmother wisely sitting in the shade but we got up to get closer to the action. There was Miss Emily perched straight up majestically on a random horse competing for the first time against 5 other colleges and universities. She won 2nd place in the first round and later on that day, she won 1st place in the second round. Her parents and grandmother were so proud of Emily and rightfully so.
On our way back towards Atlanta I admired the huge displays of tall pink flowers in the median of GA400. The DOT plants them and they are a sight to see. I have a picture of them on my Facebook page.
Joe pulled into the North Georgia Premium Outlet Shopping Center in Dawsonvuille and I asked him why. We are going to CHICOS which he knows is my favorite clothes place but I did not need anything, They were having a Columbus Day sale which I did not realize how good it was. I bought one pair of capris, one pair of slacks, two tunic blouses, a long necklace and two pairs of earrings for only $82. Wow. Joe was pleased! While we were walking towards CHICOS, we ran into Nancy Meyers, one of the MPD Atlanta members who was shopping up there with her husband. She looked beautiful and fresh in her bright orange blouse and capris.
Joe called his sister Donna since she loves nearby and surprisingly Donna and Rick were at home watching Georgia shockingly beat the mighty Tennessee football team. We stopped by for a short visit to update them on Joe. Donna has been following the blog so she was already fulled aware.
When we got home, I decided to crash upstairs for a little bit since I was sleepy. I slept in a red Alaska tee shirt and snoozed away like a log. When I woke up at 7:15, Joe was already up so I just rolled over to sleep some more. It was then I saw that I had my red Alaskan tee shirt on and realized that it was 7:15 PM not AM. Groggingly I walked downstairs and Joe asked where we were going to dinner tonight. I told him to wait till I woke up fully and get my mind clearer. Geez, I am really sleeping soundly.
I recommended that we eat at Nino's on Cheshire Bridge Road since we had not been there in a long time. It proved to be a great pick since Joe ate his entire meal which is very unusual. He had the escargots, chicken Parmesan, and tiramasu, wine and coffee. He was happy and he will sleep great tonight.
We are both looking forward to Sunday and the events planned for that day.
Ciaoi,
Bonnie
On Thursday I fired off an e-mail to Dr. Keating and Dr. Badoux at MDACC asking more questions. Some of the questions were straight forward. One of which whether Joe to not do any treatment and just stay on INCYTE and about the stem cell transplant.
Dr. Badoux replied, "Joe will need chemotherapy prior to transplantation. We can always organize a transplant appointment for consultation and typing when he is here.
Mantle cell lymphoma is a heterogeneous disease and the prognosis is not poor for everyone! There is a good chance of response with treatment and I would not recommend doing nothing."
Dr Badoux comments gave me confidence plus along with the massive amount of reading I did, I truly believe that it is the best option at this time. I did ask him to set up a transplant consultation while we are there this coming week as well as typing done. The articles I read about the R-FCM combochemotherapy is that it is effective and that it can put the disease into remission for awhile. But, it will come back. Each time they do it after a remission period it is less effective. Joe will have four days of chemo this week then will have four days very month for up to six months. It is possible for it to have effect after three cycles. Some patients have had some serious side effects but MDACC has a proven treatment for each of them. Joe and I read some blogs about three patients adventures over a six months and later period of time. Knowing somewhat to expect is helpful.
I told Joe Thursday night at dinner at Chili's of the new diagnosis and what I had found out so far about it. I gave him the hard truth with of course some tears coming from me. Joe handled the news gallantly and brave. It is a blessing that he trusts me so much and that he knows with all his heart and mind that I will leave no stone unturned and fight for him with all my heart and mind. What a man! He is my rock on earth and gives me the courage to do whatever I think is the right thing. While we were there, the squealing in my eyes from the new hearing aids went to the painful stage. Joe could hear them from across the table with all the noise level in the bar area. It is no wonder thay I did not throw them against the wall. We sit in the bar area of Chili's since it is where we get the best service.
On Friday after my MRI, Joe and I went back to COSTCO in Dunwoody to the hearing aid department for the second day in a row. The day before I told them to remove Program 2 and put Program 1 back down to the original level. Well, they did take off Program 2 but they INCREASED the level of Program 1 that was already awful and made it TORTURE! Now, it is down to an acceptable level without the squealing. If it fails again, I will turn these in and get my money back and try a different model.
Since we were at COSTCO, I enticed Joe to buy the 55 inch HD LCD TV that was on sale for $998. The monstrous rear projection TV that is in the living room where Joe prefers to stretch out was fuzzy and we had gotten spoiled by the LCD TV in the den. With Joe recuperating from chemo and the continuing chemo for six months, I wanted him to have a great viewing experience and now he will. Now we have to find time to set it up.
Joe is now down to zero INCYTE and has tapered off of it quite well with additional tiredness but we expected that. Joe keeps saying to others that it proves the INCYTE really works at improving Quality of Life.
IN the last two weeks I have made sure that Joe and I go out to our favorite restaurants and he enjoys his favorite foods. It has been a very "rich" experience and Joe has really gotten his full. I wanted him to eat really good so his stamina would be better. Friday night we hit the Atlanta Fish Market where we had not been since 2/15/2008. The Buckhead Life Restaurant Chain has sent me a $25 off gift card for October so we took advantage of that. After cashing that in, they gave us another $25 gift card for November, They have some of our favorite nice restaurants. Joe had 1.5 pound fresh lobster and I had a lobster mixed scampi. We shared some velvety smooth creamy mashed potatoes and fresh tender green beans. Terrific meal and service. We will not stay away so long next time.
We came home to watch the Braves play the Giants. It was not fun watching the game since at the bottom of the 7th it was 4-1 and the Braves looked horrible. It was more than I could bear. We were both tired since it was late with them playing on the West Coast, so we went to bed thinking for sure, our Bravos would lose BUT......shockingly to us, we found out our Bravos won in 11 innings 5-4. They had tied it up in the 8th. So when we attend the game tomorrow (SUNDAY) at Turner Field the series will be tied. The Braves are really a miracle team with all their injuries of key players like Chipper and Prado. Joe and I will enjoy the day tomorrow. Our seats are in the upper level third base side above 3rd base in the 8th row. I will wear my big red hat which puts me as Bonnie in perfect form.
The steroids that I am taking for my right shoulder is suppose to make me stay awake but it has done the opposite. I suppose that the meds have reduced the pressure on the shoulder which has been more comfortable to sleep. I am so sound asleep and I have been sleeping late. What a huge blessing this is, since I am not laying awake thinking the worse of everything. It also has healed the sores in my mouth from the stress. Who would have thunk!
What a beautiful warm fall Saturday in Georgia to drive to Dahlonega to see Emily Bennett, our next door neighbor's daughter, compete in her first Equestrian Show as a freshman at North Georgia College. On the way there we found a BBQ place attached to a gas station on Highway 9 just north of town called Smokin' Gold BBQ. With some friendly North Georgia ladies running the place they were so sweet. There was a sign announcing their special of 1/3 pound of Burnt End with sides and a drink. Joe and I usually order pulled pork. I asked what was their best BBQ and she said the Beef Brisket. What is "burnt end?" It is marinated brisket cooked in a smoker, then marinated again, and cooked some more in the smoker. The fat is caramelized with no fat showing and black on all sides. She gave Joe and I a chunk to taste and OH MY! It was sensational with my taste buds begging for more. Joe was sold too but we ordered the smaller sandwich which was plenty big. All around the room they displayed the trophies they have won and there are a bunch. It is worth a trip t take especially if you are in the Dahlonega area.
We found Tiffany Farms which is northwest of Dahlonega Square and Joe parked his beloved bright red Ford F150 pick up on the farm owner's field along with the rest of the crowd for the Equestrian Show competition hosted by North Georgia College. With the sky, bright blue and the air warm we had arrived just in time for Emily's event. We found her parents and Grandmother wisely sitting in the shade but we got up to get closer to the action. There was Miss Emily perched straight up majestically on a random horse competing for the first time against 5 other colleges and universities. She won 2nd place in the first round and later on that day, she won 1st place in the second round. Her parents and grandmother were so proud of Emily and rightfully so.
On our way back towards Atlanta I admired the huge displays of tall pink flowers in the median of GA400. The DOT plants them and they are a sight to see. I have a picture of them on my Facebook page.
Joe pulled into the North Georgia Premium Outlet Shopping Center in Dawsonvuille and I asked him why. We are going to CHICOS which he knows is my favorite clothes place but I did not need anything, They were having a Columbus Day sale which I did not realize how good it was. I bought one pair of capris, one pair of slacks, two tunic blouses, a long necklace and two pairs of earrings for only $82. Wow. Joe was pleased! While we were walking towards CHICOS, we ran into Nancy Meyers, one of the MPD Atlanta members who was shopping up there with her husband. She looked beautiful and fresh in her bright orange blouse and capris.
Joe called his sister Donna since she loves nearby and surprisingly Donna and Rick were at home watching Georgia shockingly beat the mighty Tennessee football team. We stopped by for a short visit to update them on Joe. Donna has been following the blog so she was already fulled aware.
When we got home, I decided to crash upstairs for a little bit since I was sleepy. I slept in a red Alaska tee shirt and snoozed away like a log. When I woke up at 7:15, Joe was already up so I just rolled over to sleep some more. It was then I saw that I had my red Alaskan tee shirt on and realized that it was 7:15 PM not AM. Groggingly I walked downstairs and Joe asked where we were going to dinner tonight. I told him to wait till I woke up fully and get my mind clearer. Geez, I am really sleeping soundly.
I recommended that we eat at Nino's on Cheshire Bridge Road since we had not been there in a long time. It proved to be a great pick since Joe ate his entire meal which is very unusual. He had the escargots, chicken Parmesan, and tiramasu, wine and coffee. He was happy and he will sleep great tonight.
We are both looking forward to Sunday and the events planned for that day.
Ciaoi,
Bonnie
Thursday, October 7, 2010
More News for today 10/7/2020 MANTLE CELL LYMPHOMA
More butterflies in my stomach right now since I heard from one of Joe's Leukemia doctors at MDACC just a moment ago. I am not sure what it means but please pray as I research this evening. I am scared. Joe does not know yet. I need to get my emotions in check. Here is what he wrote since I sent an e-mail last night for an interpretation of the Lymphoma Panel. I am grateful that the doctor responded so I have time to research it. God bless. Here is what he said.
"Mr Evans' investigations are consistent with a Mantle Cell Lymphoma variant of chronic lymphocytic leukemia (CLL). These 2 conditions are closely related so the diagnosis is not always clear cut. This result is of some relevance as it helps us guide the treatment.
We recommend a treatment called FCM-R containing three chemotherapy drugs called fludarabine, cyclophosphamide, and mitoxantrone and an antibody called rituximab. This treatment has been very effective for both CLL and mantle cell lymphoma. We do expect that you will have some decrease in your counts initially and we will have to monitor this carefully. There is another commonly used treatment called HyperCVAD, however, we feel that this latter treatment may not be tolerated as well as the FCM-R. The treatment will take 3-4 days every month for 3 to 6 cycles depending on response.
We will discuss all the details during your appointment.
Please let me know if you have further questions."
Ciao,
Bonnie
"Mr Evans' investigations are consistent with a Mantle Cell Lymphoma variant of chronic lymphocytic leukemia (CLL). These 2 conditions are closely related so the diagnosis is not always clear cut. This result is of some relevance as it helps us guide the treatment.
We recommend a treatment called FCM-R containing three chemotherapy drugs called fludarabine, cyclophosphamide, and mitoxantrone and an antibody called rituximab. This treatment has been very effective for both CLL and mantle cell lymphoma. We do expect that you will have some decrease in your counts initially and we will have to monitor this carefully. There is another commonly used treatment called HyperCVAD, however, we feel that this latter treatment may not be tolerated as well as the FCM-R. The treatment will take 3-4 days every month for 3 to 6 cycles depending on response.
We will discuss all the details during your appointment.
Please let me know if you have further questions."
Ciao,
Bonnie
Thurday, October 7, 2020
Joe's energy level is decreasing which is expected since he is tapering off the INCYTE trial drug. He has decent energy in the morning then he knows to take breaks and time outs. His stomach looks much bigger to me which would be his spleen increasing from the INCYTE withdrawal.
This morning I misplaced my car keys, my sunglasses and my credit card. After a irritating search for at least an hour, I found them all. They were all in different places. I need to focus when I put something down. There is no doubt in my mind that it is stress related since our minds will react even if we think we are OK. Another stress related issue is that I get sores in my mouth that are nasty. You heard if the saying, " Well, just suck it in." It is what I do without realizing it. I suck the sides of my mouth that they rub on the teeth thus the sores. I do it during the day and have no idea I am doing it. I have a special mouth wash to numb it that does give me some relief. It aggravates me that I do it. Crazy, isn't it?
Last night it was LLS Support Chat On Line. Some of the people are the ones with leukemia or lymphoma. Some of us are caregivers. It lasts two hours but people come and go from the chat. The situations, that some have, are mind boggling and sad. I was disappointed that Phred from Texas was not on line since I knew that he was having a very difficult time the day before. He has health insurance issues and he lives alone. It is so cruel to have to handle everything alone. His computer also died so he is desperate for a new or borrowed one. If any one has an extra one, please let me know and I will ship it to him. My heart goes out to him. I tried to reach out to him today via texting on the phone but I could not get him to open up. I will keep trying. Lord, be with Phred.
My new hearing aids suck. After an adjustment yesterday, I had squeals about 60% of the time that I was ready to throw them at the wall. I drove back over to COSTCO today and they took program #2 off of them. It is somewhat better but I still get some squeals (feedback). Please Lord give me the patience to get them right and know when to give up and get a different type. For those who do not know, I have a 60% hearing lost in each ear since I was about 3 years old from having Inward Measles with a high fever for a number of days. It killed the nerves in my ears. My hearing issue did not come to light until I was in 5th grade when I went from an A student to an F student. It was the first time in school that I was sitting in back of a classroom. I did not know that I could not hear. Hearing specialists in NYC could do nothing for me and told my Mom to get me to learn lip reading. I did not get my first hearing aid till I was about 30 years old when my supervisor told me to get a hearing aid or be fired. There was no America's Disability Act back in 1974. I got a hearing aid even though past physicians did not think it would help. I excelled at the job and eventually took early retirement from that employer 21 years later. Every few years I get an ear medical expert to give me opinion but nothing has changed. So it is what it is so one just deals with it. I pray that I can get these new ones to work properly to assist me.
Tomorrow is my MRI at Emory Orthopedic to see of they can pin down my right shoulder issue. We shall see.
The grass we planted is coming up and looks great to see grass grow where it died from the prolonged drought. The key is to see if we can make it last. Green thumb, come to me! I do not feel too bad since most people in our subdivision who had fescue, their lawn is gone even though they had sod, sprinkler systems and yard people. I am carefully watering it to what is suggested.
Butterflies are in my stomach as we get closer to next week. Thank goodness we have some fun things planned this weekend to get both of our minds off next week.
God has been directing us the last thirteen years as well as the last month. I need to trust God that He will not give us any more than we can handle. I am so worried about Joe next week about his after effects from the FCR chemo. I am concerned whether if he has a rough time with the chemo and if it does not work and he goes through this challenge for no reason. I am not asking for words of wisdom from anyone. I am just letting my emotions out of this blog.
Peace be with you all,
Bonnie
This morning I misplaced my car keys, my sunglasses and my credit card. After a irritating search for at least an hour, I found them all. They were all in different places. I need to focus when I put something down. There is no doubt in my mind that it is stress related since our minds will react even if we think we are OK. Another stress related issue is that I get sores in my mouth that are nasty. You heard if the saying, " Well, just suck it in." It is what I do without realizing it. I suck the sides of my mouth that they rub on the teeth thus the sores. I do it during the day and have no idea I am doing it. I have a special mouth wash to numb it that does give me some relief. It aggravates me that I do it. Crazy, isn't it?
Last night it was LLS Support Chat On Line. Some of the people are the ones with leukemia or lymphoma. Some of us are caregivers. It lasts two hours but people come and go from the chat. The situations, that some have, are mind boggling and sad. I was disappointed that Phred from Texas was not on line since I knew that he was having a very difficult time the day before. He has health insurance issues and he lives alone. It is so cruel to have to handle everything alone. His computer also died so he is desperate for a new or borrowed one. If any one has an extra one, please let me know and I will ship it to him. My heart goes out to him. I tried to reach out to him today via texting on the phone but I could not get him to open up. I will keep trying. Lord, be with Phred.
My new hearing aids suck. After an adjustment yesterday, I had squeals about 60% of the time that I was ready to throw them at the wall. I drove back over to COSTCO today and they took program #2 off of them. It is somewhat better but I still get some squeals (feedback). Please Lord give me the patience to get them right and know when to give up and get a different type. For those who do not know, I have a 60% hearing lost in each ear since I was about 3 years old from having Inward Measles with a high fever for a number of days. It killed the nerves in my ears. My hearing issue did not come to light until I was in 5th grade when I went from an A student to an F student. It was the first time in school that I was sitting in back of a classroom. I did not know that I could not hear. Hearing specialists in NYC could do nothing for me and told my Mom to get me to learn lip reading. I did not get my first hearing aid till I was about 30 years old when my supervisor told me to get a hearing aid or be fired. There was no America's Disability Act back in 1974. I got a hearing aid even though past physicians did not think it would help. I excelled at the job and eventually took early retirement from that employer 21 years later. Every few years I get an ear medical expert to give me opinion but nothing has changed. So it is what it is so one just deals with it. I pray that I can get these new ones to work properly to assist me.
Tomorrow is my MRI at Emory Orthopedic to see of they can pin down my right shoulder issue. We shall see.
The grass we planted is coming up and looks great to see grass grow where it died from the prolonged drought. The key is to see if we can make it last. Green thumb, come to me! I do not feel too bad since most people in our subdivision who had fescue, their lawn is gone even though they had sod, sprinkler systems and yard people. I am carefully watering it to what is suggested.
Butterflies are in my stomach as we get closer to next week. Thank goodness we have some fun things planned this weekend to get both of our minds off next week.
God has been directing us the last thirteen years as well as the last month. I need to trust God that He will not give us any more than we can handle. I am so worried about Joe next week about his after effects from the FCR chemo. I am concerned whether if he has a rough time with the chemo and if it does not work and he goes through this challenge for no reason. I am not asking for words of wisdom from anyone. I am just letting my emotions out of this blog.
Peace be with you all,
Bonnie
Tuesday, October 5, 2010
Monday and Tuesday 10/4 and 10/5
On Monday 10/4 Joe reduced the INCYTE trial drug to a total of 10 mg a day. Joe claims he can feel the difference in his energy level but he keeps going and going. He continues to keep in a positive frame of mind.
On Monday afternoon Joe and I met with our pastor, Caleb Clarke, at his office at our church. The conversation gave Caleb an idea how we are handling things thus far. He had stated the congregation has us deep in their thoughts and prayers. Joe and I have gotten such strength from so many people prayer's across the world. It is very touching and humbling to know that there are so many people in our corner. Thank you from the both of us.
On Monday and Wednesday nights I participate with an on line chat for patients and caregivers who have one of the many forms of leukemia. Way too many have lost their jobs and no longer have health insurance coverage. Some are fighting their battles alone. Each has a story to tell but yet each person is real, compassionate and loving. The tales are heartbreaking but each one of us gains strength from each other. When one is fighting a life threatening disease, one gets comfort from others in the same boat or worse. If you are fighting something, there is a support group that could help you and help your love ones. You will learn so much. If you need help in finding one, please contact me and I will research it for you.
Today I had a follow up for my painful right shoulder/arm with my Emory Orthopedic at 10:30 AM. I was not seen till 11:47 AM and let the doctor know that I was unhappy with the wait. The staff should explain any delay to their patients instead of brushing them off. I told him that the cortisone shot he gave in the shoulder on 9/9 did not help at all and after three weeks of Physical Therapy it is worse. Now he wants to order a MRI of the neck! He feels 90% sure that the issue is in the neck because of the ineffectiveness of the shot and the pain worsening with physical therapy. I swear that it is in the shoulder joint and think the MRI should be of it. He disagreed. This afternoon I went to the Physical Therapist who twisted and pulled on my neck and he does not think it is the neck. I requested that he call my Orthopedic doctor and he said he would. I had asked the doctor whether the MRI could also be done on both the neck and shoulder at the same time but Doc said the MRI people do not like doing that since it is totally two different positions plus I would be in the machine trying to be still for one hour which would be very difficult. I wonder. I got a prescription to take steroids for a week which I am dreading since I have seen it blow up people in width. I do not need that. My self esteem is crappy already.
Since I was in the Perimeter area, I stopped by my hairdresser at Hair Clips to get my hair trimmed up. I have been going to the same hairdresser for about 20 years. I saw someone at the Tucker Walmart that had fabulous haircut and I asked her who did it and that is how I found my gal. In the same Georgetown Shopping Center there is Goldbergs who has great bagels and a fabulous rare roast beef sandwich so I had to stop there for lunch.
Tonight Joe and I had dinner at Prime at Lenox Square where this week it is Restaurant Week Special which consisted of a Wedge Blue Cheese Bacon Bits Salad, 8 oz perfectly cooked and tender New York Strip with au jus, fresh French Fries with garlic and Parmesan cheese, as well as a cheesecake for an amazing $25. I try to make all our restaurant reservations through OPEN TABLE where we earn points that one can cash out for a meal. We are up to 11,500 points which equals $115 if we cash it out now. I have used OPEN TABLE all across the United States as well as in Vancouver, Canada. It has valuable information such as comments from other people. Links for maps and the menus. Prime is one of our favorite restaurants in Atlanta and since we eat there so much, we belong to the "Friends of Tom" Club which gives you s discount on your meals. Hey, it all adds up. Joe and I belong to many restaurants VIP cards that cost nothing but you get all kinds of good stuff and coupons over the year including free birthday and anniversary meals.
I found out today that Cristy Bennett's 80 year old Dad, our wonderful neighbor, has bile duct cancer. A physician found it during an exam for his hurt back. Luckily they caught it at an early stage which is unusual since it normally found when it has spread quickly since one does not "feel" like there is anything wrong. Keep her Dad and Cristy in your prayers.
Thank you all for your support since it means the world to Joe and me. You are giving us strength with your prayers to the Almighty. We will make this journey a success with your help.
Ciao!
Bonnie
On Monday afternoon Joe and I met with our pastor, Caleb Clarke, at his office at our church. The conversation gave Caleb an idea how we are handling things thus far. He had stated the congregation has us deep in their thoughts and prayers. Joe and I have gotten such strength from so many people prayer's across the world. It is very touching and humbling to know that there are so many people in our corner. Thank you from the both of us.
On Monday and Wednesday nights I participate with an on line chat for patients and caregivers who have one of the many forms of leukemia. Way too many have lost their jobs and no longer have health insurance coverage. Some are fighting their battles alone. Each has a story to tell but yet each person is real, compassionate and loving. The tales are heartbreaking but each one of us gains strength from each other. When one is fighting a life threatening disease, one gets comfort from others in the same boat or worse. If you are fighting something, there is a support group that could help you and help your love ones. You will learn so much. If you need help in finding one, please contact me and I will research it for you.
Today I had a follow up for my painful right shoulder/arm with my Emory Orthopedic at 10:30 AM. I was not seen till 11:47 AM and let the doctor know that I was unhappy with the wait. The staff should explain any delay to their patients instead of brushing them off. I told him that the cortisone shot he gave in the shoulder on 9/9 did not help at all and after three weeks of Physical Therapy it is worse. Now he wants to order a MRI of the neck! He feels 90% sure that the issue is in the neck because of the ineffectiveness of the shot and the pain worsening with physical therapy. I swear that it is in the shoulder joint and think the MRI should be of it. He disagreed. This afternoon I went to the Physical Therapist who twisted and pulled on my neck and he does not think it is the neck. I requested that he call my Orthopedic doctor and he said he would. I had asked the doctor whether the MRI could also be done on both the neck and shoulder at the same time but Doc said the MRI people do not like doing that since it is totally two different positions plus I would be in the machine trying to be still for one hour which would be very difficult. I wonder. I got a prescription to take steroids for a week which I am dreading since I have seen it blow up people in width. I do not need that. My self esteem is crappy already.
Since I was in the Perimeter area, I stopped by my hairdresser at Hair Clips to get my hair trimmed up. I have been going to the same hairdresser for about 20 years. I saw someone at the Tucker Walmart that had fabulous haircut and I asked her who did it and that is how I found my gal. In the same Georgetown Shopping Center there is Goldbergs who has great bagels and a fabulous rare roast beef sandwich so I had to stop there for lunch.
Tonight Joe and I had dinner at Prime at Lenox Square where this week it is Restaurant Week Special which consisted of a Wedge Blue Cheese Bacon Bits Salad, 8 oz perfectly cooked and tender New York Strip with au jus, fresh French Fries with garlic and Parmesan cheese, as well as a cheesecake for an amazing $25. I try to make all our restaurant reservations through OPEN TABLE where we earn points that one can cash out for a meal. We are up to 11,500 points which equals $115 if we cash it out now. I have used OPEN TABLE all across the United States as well as in Vancouver, Canada. It has valuable information such as comments from other people. Links for maps and the menus. Prime is one of our favorite restaurants in Atlanta and since we eat there so much, we belong to the "Friends of Tom" Club which gives you s discount on your meals. Hey, it all adds up. Joe and I belong to many restaurants VIP cards that cost nothing but you get all kinds of good stuff and coupons over the year including free birthday and anniversary meals.
I found out today that Cristy Bennett's 80 year old Dad, our wonderful neighbor, has bile duct cancer. A physician found it during an exam for his hurt back. Luckily they caught it at an early stage which is unusual since it normally found when it has spread quickly since one does not "feel" like there is anything wrong. Keep her Dad and Cristy in your prayers.
Thank you all for your support since it means the world to Joe and me. You are giving us strength with your prayers to the Almighty. We will make this journey a success with your help.
Ciao!
Bonnie
Sunday, October 3, 2010
Our Weekend, 10/2 and 10/3
The perfect weather in Atlanta this weekend was great for Joe since he does so much better when the temperatures are cooler. Saturday morning started like every morning with a trip to the Bagel shop for Joe and me. It was particularly more fun with two of my bagel mates that I have not seen in while were there, Sal from Smithtown, NY and a real Private Investigator. Sal is best friends with one of my Hauppauge High classmates which always gets a great chuckle. The two told me of what they consider even a better bagel shop on Killian Hill. Joe and I have got to try it this coming week.
I dropped Joe off at our house since he wanted to go over to our home away from home, Home Depot. I own Home Depot stock so we make it our first line of hardware and garden shopping. Max, our golden, hopped in the car with me to enjoy a visit to the Pine Lake Fall Festival since they allow dogs there. Pine Lake is a small lovely village in the middle of nowhere. It is between Memorial Drive and Rockbridge Rd in the Stone Mountain area. The center of the village is a lovely lake, beach and clubhouse. The community reminds me of a little mountain village of homes since there are no stores in the village. There are cute little cottages with huge trees with a rustic and creative feel. Pine Lake is home to many artists in the area and it is easy to see why once you visit this little oasis. The festival was small with maybe 20 stalls with the local artists handiwork. The works were quite varied but I did not see anything that I liked. I did love walking with Max around the lake enjoying a perfect fall day.
I got home in time to watch the Tribute to Bobby Cox special on TV which reminded me of so many special moments that Joe and I have shared with Cox as the illustrious manager. The baseball game was a loser for us that night. Little did I know that when I bought tickets for Sunday's final season's game that it would be so pivotal.
Saturday night I picked a new well reviewed restaurant in Decatur called "The Iberian Pig." I think that we would had tried the place just because of the interesting name. I had read the reviews on Open Table and YELP and it was widely loved. It makes it easier to know what to order at a new place by reading "real" people reviews. It sounded awesome and different but we went with an open mind. The Staff is phenomenal and really the best attention to detail in ways that I never even thought of before. You have got to experience it. Our waiter knew that is was our first time there and discussed how they list items on the menu. I loved how they listed the wines as well as the various foods. The place was packed upstairs and downstairs as well as about 10 fulled tables outside. We had reservations and they seated us immediately and we liked that since we did see others waiting. The noise level was a bit high but not overly so but it was because this is a place where people are sharing tapas and dishes and talking about it. Watching the various plates go by us made us inquire as to what they were. Our waiter would not only tell us, he also pointed it out of the menu. Joe and I shared two great tapas that had been raved about. The first one was mini tacos with succulent pulled pork with just the right spices and toppings. It was served hot and the pork melted on our mouths. The next tapa was B.W.D. (bacon wrapped dates) which was a date with cheese, walnut and wrapped with crispy fresh bacon. We loved it and we never had anything like this before. The entrees were huge and can be shared for sure since we each ate only half of it. I had the T.I.P. Chicken with was tender, and great spices and melted cheese and the two samples of other tapas on the dish were heavenly such as fried goat cheese (almost like dessert) and a ravioli like I never tasted before. Joe had the better of the two dishes with perfectly cooked pork tenderloin. Now do not get me wrong, the two entrees were both superb. We had no room for dessert and took the leftovers home for Max. Max rated the food as terrific and gobbled all of it down rather quickly.
When we got home to watch SNL with Brian Cranston as host but after the horrible display of the "music" act with Kanye West, I went to bed. At first I thought that it was a skit cause it was so bad. Who could possibly like his stuff? It was one of the worse that I have ever seen. Good Night, SNL!
On Sunday morning, Joe decided that he would not be going to church with me. Joe has been cramming household chores in trying to get as much done as possible before he starts chemo the following week. I sat towards the back and side of the church so I could leave a bit before the end of the service. Today was World Wide Communion Sunday so the service could run very late and we had tickets to the last Braves Game that started downtown at 1:35 PM. Since it was sold out and standing room only, we decided to take MARTA but it takes longer than it normally takes. The Pastor's sermon was a good one this morning with three guests from Africa. I left just at the start of the last hymn when Shelley stopped me in the lobby with her sly happy smile stating, "I know where you are going?" Her hubby looked at her strangely and then she said, " The Braves game." It is hard to pass one over on Shelley.
I drove home to pick up Joe. I changed my sweater for a Braves jersey and my shoes for my good luck silver sequenced sneakers as well as my Braves Cap. We hopped on MARTA at the Decatur Station and got off at Five Points to transfer to the Braves Shuttle. Why MARTA has the shuttle completely on the other side of Underground where the World of Coke used to be, makes no sense for patrons. Luckily there was a golf cart to assist us to the bus. The bus dropped us right next to Turner Field and we arrived just in time for the first pitch. After a more dramatic game than it needed to be, we won and now we would have to wait for the outcome of the Giants/Padre game. The fans were cheering the Giants to win their game since if they did, the Braves would win the WILDCARD and be in the playoffs. THEY DID. So Bobby Cox gets his last chance to play in the playoffs which his team and fans wanted for him to go out as a WINNER.
On our way to dinner at Sangria's, I got a thrilled excited call from Gilbert and Judy Morales. They were ecstatic about the Jaguars beating the great Peyton Manning led Colts in the last seconds by a monstrous long 58 yard field goal. I was so happy for them. It was so cool having them share their joy with us.
Also great was to hear from both my sons on a Sunday. I love hearing their voices. My youngest, Mike, has interviewed for a a new leadership position with Bank of America and is one of the final two for the position. I hope he gets it but I know that if he does not get this one, another opportunity will be around the corner, I keep praying for his family to find happiness once again. They deserve it.
Tomorrow Joe drops his INCYTE trial drug another 5 mg for a total of only 10 mg a day. It will be a real test for Joe and I hope that his stamina holds up. His attitude is terrific.
Keep praying Joe's Prayer Army since I am getting butterflies as the days get closer to our journey to Houston. One wonderful piece of great news is that one of the MPD Support members from Washington State will be at MDACC at the same time as Joe and I. It is still amazing to me how we make friends over the on line support chats. I consider Barbara a friend. She is also on the INCYTE trial as Joe. We have a bond that makes us stronger together fighting the same fight.
Good night and sleep well. May God bless you and protect you and your loved ones.
Bonnie
I dropped Joe off at our house since he wanted to go over to our home away from home, Home Depot. I own Home Depot stock so we make it our first line of hardware and garden shopping. Max, our golden, hopped in the car with me to enjoy a visit to the Pine Lake Fall Festival since they allow dogs there. Pine Lake is a small lovely village in the middle of nowhere. It is between Memorial Drive and Rockbridge Rd in the Stone Mountain area. The center of the village is a lovely lake, beach and clubhouse. The community reminds me of a little mountain village of homes since there are no stores in the village. There are cute little cottages with huge trees with a rustic and creative feel. Pine Lake is home to many artists in the area and it is easy to see why once you visit this little oasis. The festival was small with maybe 20 stalls with the local artists handiwork. The works were quite varied but I did not see anything that I liked. I did love walking with Max around the lake enjoying a perfect fall day.
I got home in time to watch the Tribute to Bobby Cox special on TV which reminded me of so many special moments that Joe and I have shared with Cox as the illustrious manager. The baseball game was a loser for us that night. Little did I know that when I bought tickets for Sunday's final season's game that it would be so pivotal.
Saturday night I picked a new well reviewed restaurant in Decatur called "The Iberian Pig." I think that we would had tried the place just because of the interesting name. I had read the reviews on Open Table and YELP and it was widely loved. It makes it easier to know what to order at a new place by reading "real" people reviews. It sounded awesome and different but we went with an open mind. The Staff is phenomenal and really the best attention to detail in ways that I never even thought of before. You have got to experience it. Our waiter knew that is was our first time there and discussed how they list items on the menu. I loved how they listed the wines as well as the various foods. The place was packed upstairs and downstairs as well as about 10 fulled tables outside. We had reservations and they seated us immediately and we liked that since we did see others waiting. The noise level was a bit high but not overly so but it was because this is a place where people are sharing tapas and dishes and talking about it. Watching the various plates go by us made us inquire as to what they were. Our waiter would not only tell us, he also pointed it out of the menu. Joe and I shared two great tapas that had been raved about. The first one was mini tacos with succulent pulled pork with just the right spices and toppings. It was served hot and the pork melted on our mouths. The next tapa was B.W.D. (bacon wrapped dates) which was a date with cheese, walnut and wrapped with crispy fresh bacon. We loved it and we never had anything like this before. The entrees were huge and can be shared for sure since we each ate only half of it. I had the T.I.P. Chicken with was tender, and great spices and melted cheese and the two samples of other tapas on the dish were heavenly such as fried goat cheese (almost like dessert) and a ravioli like I never tasted before. Joe had the better of the two dishes with perfectly cooked pork tenderloin. Now do not get me wrong, the two entrees were both superb. We had no room for dessert and took the leftovers home for Max. Max rated the food as terrific and gobbled all of it down rather quickly.
When we got home to watch SNL with Brian Cranston as host but after the horrible display of the "music" act with Kanye West, I went to bed. At first I thought that it was a skit cause it was so bad. Who could possibly like his stuff? It was one of the worse that I have ever seen. Good Night, SNL!
On Sunday morning, Joe decided that he would not be going to church with me. Joe has been cramming household chores in trying to get as much done as possible before he starts chemo the following week. I sat towards the back and side of the church so I could leave a bit before the end of the service. Today was World Wide Communion Sunday so the service could run very late and we had tickets to the last Braves Game that started downtown at 1:35 PM. Since it was sold out and standing room only, we decided to take MARTA but it takes longer than it normally takes. The Pastor's sermon was a good one this morning with three guests from Africa. I left just at the start of the last hymn when Shelley stopped me in the lobby with her sly happy smile stating, "I know where you are going?" Her hubby looked at her strangely and then she said, " The Braves game." It is hard to pass one over on Shelley.
I drove home to pick up Joe. I changed my sweater for a Braves jersey and my shoes for my good luck silver sequenced sneakers as well as my Braves Cap. We hopped on MARTA at the Decatur Station and got off at Five Points to transfer to the Braves Shuttle. Why MARTA has the shuttle completely on the other side of Underground where the World of Coke used to be, makes no sense for patrons. Luckily there was a golf cart to assist us to the bus. The bus dropped us right next to Turner Field and we arrived just in time for the first pitch. After a more dramatic game than it needed to be, we won and now we would have to wait for the outcome of the Giants/Padre game. The fans were cheering the Giants to win their game since if they did, the Braves would win the WILDCARD and be in the playoffs. THEY DID. So Bobby Cox gets his last chance to play in the playoffs which his team and fans wanted for him to go out as a WINNER.
On our way to dinner at Sangria's, I got a thrilled excited call from Gilbert and Judy Morales. They were ecstatic about the Jaguars beating the great Peyton Manning led Colts in the last seconds by a monstrous long 58 yard field goal. I was so happy for them. It was so cool having them share their joy with us.
Also great was to hear from both my sons on a Sunday. I love hearing their voices. My youngest, Mike, has interviewed for a a new leadership position with Bank of America and is one of the final two for the position. I hope he gets it but I know that if he does not get this one, another opportunity will be around the corner, I keep praying for his family to find happiness once again. They deserve it.
Tomorrow Joe drops his INCYTE trial drug another 5 mg for a total of only 10 mg a day. It will be a real test for Joe and I hope that his stamina holds up. His attitude is terrific.
Keep praying Joe's Prayer Army since I am getting butterflies as the days get closer to our journey to Houston. One wonderful piece of great news is that one of the MPD Support members from Washington State will be at MDACC at the same time as Joe and I. It is still amazing to me how we make friends over the on line support chats. I consider Barbara a friend. She is also on the INCYTE trial as Joe. We have a bond that makes us stronger together fighting the same fight.
Good night and sleep well. May God bless you and protect you and your loved ones.
Bonnie
Friday, October 1, 2010
Friday, October 1, 2010
Joe joined me at Bagels n More for my morning ritual of having a bagel for breakfast. He was so sweet today. He is aware how my shoulder is giving me more issues by opening doors, grabbing my purse, getting the newspaper. I appreciate all those little things so much.
My physical therapy session for my impinged shoulder was difficult today after the day before and last night hurt more than usual. I made a follow up appointment with Dr Mason at Emory Orthopedic for Tuesday to take a closer look since after three weeks of physical therapy the shoulder is worse, not better.
I headed over to Northeast Center of Bank of America hoping to donate blood today but was rejected cause in the last 12 months I visited the Guanacaste Region of Costa Rica where there had been a few cases of malaria. We had gone to Costa Rica with six friends for a week starting 10/17/2009 so I have to wait till 10/26/2010 to be able to donate. What a bummer since my hemoglobin at 13 was good enough to be able to donate. I stopped by to say hello to my old mortgage comrades but no one was there. I just left a note with a sad face stating that I was sorry to miss them.
When I got home, Joe was piddling with his tractor. He stated that he was feeling more tired than he has felt which we contribute to his slow withdrawal off INCYTE. His coloring looks good. We went over to Sports Authority and bought him some new sandals as well as some comfortable Nike pants with elastic and several shirts for his chemo session. The clothes he got breathe better so if he gets the dreaded sweats, he will feel more comfortable.
On the CLL on line support list there were several patients who gave accolades to Dr Keating and his team at MDACC. Some of the posts about Dr. Keating was amazing. He is so well thought of. Joe and I feel strongly that we are blessed that we were in the right place at the right time with Keating being in the same department as Dr V.
One of the support list owners forward me a recent article about the FCR combo therapy for CLL has been proven to prolong lives. It is the treatment that Joe will be given. I put a link on my facebook page and also sent the link to our family members so they can have some peace of mind about this particular treatment.
Tonight we had a wonderful Italian dinner at Capozzis in Decatur where they make us feel like family. They had already had iced our bottle of the house Pinot Grigio since they knew that we were coming. Joe started with a Caesar Salad and I had the tenderest and tempura fried calamari. Joe had the Soho Chicken and I had the Chicken Marsala which I adore there. It is dish licking good! They served mine with whole wheat penne. Keith, the owner, gave Joe a piece of Cheesecake on the house since Joe raved how good it was. Keith's son, Anthony, made it in house.
We came back home to watch the rest of the Braves game where the Phillies pounded the Braves. At Joe's request, I bought us tickets for Sunday's Braves game since it is the last day of the regular season and it could be Manager Bobby Cox's last game before he retires. We still have hope that the Braves will win the National League Wildcard Championship over San Diego Padres. Baseball is a humbling sport and we realize that anything could happen. Hopefully the Brave will play good Saturday and Sunday.
Ciao for Friday night,
Bonnie
My physical therapy session for my impinged shoulder was difficult today after the day before and last night hurt more than usual. I made a follow up appointment with Dr Mason at Emory Orthopedic for Tuesday to take a closer look since after three weeks of physical therapy the shoulder is worse, not better.
I headed over to Northeast Center of Bank of America hoping to donate blood today but was rejected cause in the last 12 months I visited the Guanacaste Region of Costa Rica where there had been a few cases of malaria. We had gone to Costa Rica with six friends for a week starting 10/17/2009 so I have to wait till 10/26/2010 to be able to donate. What a bummer since my hemoglobin at 13 was good enough to be able to donate. I stopped by to say hello to my old mortgage comrades but no one was there. I just left a note with a sad face stating that I was sorry to miss them.
When I got home, Joe was piddling with his tractor. He stated that he was feeling more tired than he has felt which we contribute to his slow withdrawal off INCYTE. His coloring looks good. We went over to Sports Authority and bought him some new sandals as well as some comfortable Nike pants with elastic and several shirts for his chemo session. The clothes he got breathe better so if he gets the dreaded sweats, he will feel more comfortable.
On the CLL on line support list there were several patients who gave accolades to Dr Keating and his team at MDACC. Some of the posts about Dr. Keating was amazing. He is so well thought of. Joe and I feel strongly that we are blessed that we were in the right place at the right time with Keating being in the same department as Dr V.
One of the support list owners forward me a recent article about the FCR combo therapy for CLL has been proven to prolong lives. It is the treatment that Joe will be given. I put a link on my facebook page and also sent the link to our family members so they can have some peace of mind about this particular treatment.
Tonight we had a wonderful Italian dinner at Capozzis in Decatur where they make us feel like family. They had already had iced our bottle of the house Pinot Grigio since they knew that we were coming. Joe started with a Caesar Salad and I had the tenderest and tempura fried calamari. Joe had the Soho Chicken and I had the Chicken Marsala which I adore there. It is dish licking good! They served mine with whole wheat penne. Keith, the owner, gave Joe a piece of Cheesecake on the house since Joe raved how good it was. Keith's son, Anthony, made it in house.
We came back home to watch the rest of the Braves game where the Phillies pounded the Braves. At Joe's request, I bought us tickets for Sunday's Braves game since it is the last day of the regular season and it could be Manager Bobby Cox's last game before he retires. We still have hope that the Braves will win the National League Wildcard Championship over San Diego Padres. Baseball is a humbling sport and we realize that anything could happen. Hopefully the Brave will play good Saturday and Sunday.
Ciao for Friday night,
Bonnie
Subscribe to:
Posts (Atom)