Last night I stayed with Max in the studio apartment to get away from the hospital to get myself renewed. I shamelessly slept to 11:45AM in that big comfortable king size bed with awesome sheets and pillows. I did not realize how much I needed to do that until I did it. Not more than 15 minutes later I got a call from Ollite Templeton who was at MDACC to meet with Dr. Romaguera to go over the results of all her tests she had last week. Jess, her daughter, was scared to death over worrying about her mother, Ollite. Jess had posted on the on-line support site for Mantle Cell Lymphoma. I have reached out to Jess over the last two weeks to tell her that all will be OK and that her Mom is in the best of hands. When Ollite was at MDACC just before Thanksgiving, we could not get together since her schedule was so filled up with appointments. Joe and I definitely know how that is. Running from place to place and hurry up and wait for your name to be called. Jess had e-mailed me last night and she gave her Mom my cell phone number to contact me. Her Mom would be at MDACC all day today with her father, Larry and her Aunt and Uncle who are all from Louisiana. They have some relatives that work at MDACC so they will have some support from family members locally. Ollite had asked me if I was at MDACC and I told her a little white lie and that I was and that I would meet her and her posse' at the Gazebo at 1PM. I thought if she knew that I was still at the hotel, she would have felt bad about me making a trip over there to meet with her. The way I looked at it was that I was going over there anyway to be with Joe for the rest of the day. I met all of them at the Gazebo area on the 3rd floor and spoke with them for about an hour. Ollite is a very pretty soft spoken lady and obviously very worried as all of us are. She had lymph nodes growth on her neck and other places. She had it biopsied in Louisiana and the first time they said it was not malignant. Unfortunately it kept growing and now she has a growth in her throat. There have been several list members who had the same thing but they are blessedly in remission and that there is hope as well as many treatment options. The previous week Romaguera told her that she would be at MDACC for six months. We all pray that when she saw the doctor at 4PM that she would have better news. I have not heard back from her and I pray that God gives her the strength to fight this cancer and give her peace as well as confidence that she will have more good years on this earth. She is in good hands.
I got to Joe's room about 2:15PM and he was sitting in the chair very quiet and his body language told me that he was sad. He was very tired and listless but in no pain. While I was there, he did have a low grade fever which I bought to the attention of the nurse and Tylenol bought it down. I noticed tonight his ankles were a little bit swollen like that were when he had part A chemo the first time. He also now has had the chemo "Red Devil" for over 24 hours which is very harsh on the body and still had another 24 hours to go. If the Red Devil were to get onto one's skin, it would bubble up and burn and here they are putting it into his veins. Joe did have some tears in his eyes but he held them back by closing them. I tried by best to cheer him up. For dinner I got take-out from Outback Steaks which he loves which perked him up a little bit and was so appreciative that I went and got it and we had our steak dinner on the hospital table. After that we laid next to each other on the bed with our arms around each other. I rubbed his back and legs which made him relax. He kept saying how sleepy he was and at 10PM he said that he was going to sleep for the night and for me to go back to Max and stay the hotel for the night. He said that it was good for me and that he would be find. I made sure the small light was on in the bathroom. His "call" remote next to him on his pillow and his cell phone near him to call me if he needed me. He was getting a unit of blood then and another was ordered when that one was done. The red blood usually perks Joe up since when his counts are low, he has no energy. After a week in the hospital which included the four day holiday weekend, anyone would get down. Joe is no different but he would never admit to that fact.
Thank you for those who make comments on my blog. I read them everyday and appreciate people taking time to do that. Joe and I just want to get back to Atlanta and to our home. I pray that is sooner rather than later but most importantly, Joe's health is number one. We will take care of this business and hopefully continue it in Atlanta rather than Houston.
May the Lord be with you and give you peace, love and hope!
Ciao!
MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11
Tuesday, November 30, 2010
Monday, November 29, 2010
Long Haul at MDACC
Joe is still an in patient at MDACC and continues chemotherapy. Amazingly he still has not had any adverse effects physically though his blood counts are moving all over the place.
Saturday moved so slowly that I thought the clocks were broken. I was to a point to overdosing on football. The TV in the room is up to the ceiling so one must look up to view it which is tiring after awhile especially since I have that darn bulging disc in the C6-C7 area of the neck. Just sitting in a chair is painful and reaching for anything is excruciating. I have pain pills but they do not give you many so I try to ration them out.
To escape boredom and depression, I decided to explore the empty corridors of the hospital. On the weekend it is spooky with the lights dimmed down and no one walking around. I started to feel like I was in a movie " A Night in the Hospital Halls ". If someone had opened a door, I am sure both of us would have screamed bloody murder. I found the 6th floor patient/caregiver laundromat and beauty shop. There was a person doing laundry but I left them alone so I would not scare the heck out of them. I decided to use the cross bridge to the Rotary House which is a hotel for MDACC patients and caregivers. It is a long cross way bridge over the road and at dusk one could see the colored sky and the lights of the cars in a parade down the streets. The cross way links the second floor to each building so one does not have to cross the busy street or get into inclement weather. I entered the area of the Rotary House where there is a restaurant and lo and behold a real bar with alcohol. Just what I needed. It had a very nice setting with just a few people having drinks and dinner. I sat at the bar and treated myself to a glass of Pinot Grigio and a very good French Onion Soup. I slowly enjoyed both items. It was my Oasis that let me escape for a little while.
When I made it back to the room, the Georgia Bulldog and Tech game was on. At least it was a game that had teams that meant something to me. At halftime Joe said he wanted Chinese Food so I left to go back to the hotel and walk Max. I ordered the food on line from P F Changs and picked it up at 10PM then headed back to Joe. He was so excited about some good tasting food. He loved the Hot and Sour Soup, the Spring Rolls, and Mongolian Beef. The restaurant gave us 10 fortune cookies so I handed them out to the nurses who were on duty. We watched a repeat of Saturday Night Live then called it a night. Joe had finally finished his last Cyclophophamide chemo which took 3 days to complete.
Now it is Sunday in the wee hours where they drew Joe's blood at 5:30AM. It was the first time I woke up during the night. About 8:30 AM the nurse's aid, Miss Grumpy with Loretta Lynn hair, was having issues taking Joe's blood pressure with the machine. She tried it several times. She pulled Joe's bandage from the blood draw 3 hours before. She started to pump up the blood pressure wrap and the puncture point from the blood draw, spurted out. Boy that caused her by surprise. She ran to the bathroom to get those coarse brown paper towels. With Joe's low platelets, he does not clot in 15 minutes like one should. She did not do that again. LOL. Joe and I laughed after she left the room since she was the only person who had issues with the blood pressure machine on Joe.
The Vinstrine chemo took only 15 minutes then they started the "A" chemo whose nickname is the "Red Devil". Yes, the liquid is red in color and the adverse effects are horrific. I read about it the night before and it would scare anyone. I had gone to take care of Max and attend church at St, Philips Presbyterian on San Felipe Blvd when the doctor came but Joe said that he was optimistic with the results so far. The doctor did order two units of red blood since Joe's hemoglobin was down to 7.20 which is very low. Platelets are at 55 so Joe did not need a platelet transfusion. Yeah!
When I got back to be with Joe, we were hoping to be able to watch the Falcon Football game but we were so disappointed that it was not on here locally. Joe could not leave the room and I was not going to go and see it some place when he could not. My oldest son, Keith, had emailed me and ask how things were going. I told him we were still in the hospital and the game was unavailable here. Keith came to the rescue and let us use his on-line Direct TV NFL Package game account. It meant he could not watch it which is a big thing since he could not watch it since we were using it. What a special gift to us and appreciated so much! It helped made the time go faster with being able to watch our team. They won the game over the Green Bay Packers so we were very happy.
About 7:20 PM Joe said he was hungry for some BBQ from Goode'sMcDonalds not having hot fries ready and waiting 15 minutes for them and they forgot the salt. More stupid traffic lights working out of sync. Getting to the parking garage and not being able to find my prepaid parking token. My arms weak from carrying stuff back to the room. In the elevator there was a tall man and I started that I was worn out. He said he knew what I meant. He said he is from Seattle, Washington and he has been flying back and forth since May while his wife has an advanced stage of Ovarian Cancer. Chemo did not work on her for 4 years. They wanted to have her get a Bone Marrow Transplant but the Hutch Hospital would not give it to her but MDACC would thus giving them hope. Her kidneys had shut down and had dialysis and was admitted into ICU. He was arriving from the airport to be with her and she had gained consciousness this afternoon and kidneys were starting to work. He was to fly back out tomorrow to Seattle. Well, that was so sad. So that made me so sad that all my stress accumulated and I had some tears going up the elevator to the 9th floor. I told Joe the tears was just from stress and just feeling sorry for myself. I needed to be hugged and loved. So we ate our BBQ on the small hospital bed together. For two hours we stayed that way laying next to each other. I just felt so alone.
Since I had to go back to the hotel to take care of Max, I decided to stay the night there to give me a break from the hospital. It just would be too much to go back and forth again. I needed some R and R or I should say ESCAPE.
So that is it. Good night, God be with you.
Saturday moved so slowly that I thought the clocks were broken. I was to a point to overdosing on football. The TV in the room is up to the ceiling so one must look up to view it which is tiring after awhile especially since I have that darn bulging disc in the C6-C7 area of the neck. Just sitting in a chair is painful and reaching for anything is excruciating. I have pain pills but they do not give you many so I try to ration them out.
To escape boredom and depression, I decided to explore the empty corridors of the hospital. On the weekend it is spooky with the lights dimmed down and no one walking around. I started to feel like I was in a movie " A Night in the Hospital Halls ". If someone had opened a door, I am sure both of us would have screamed bloody murder. I found the 6th floor patient/caregiver laundromat and beauty shop. There was a person doing laundry but I left them alone so I would not scare the heck out of them. I decided to use the cross bridge to the Rotary House which is a hotel for MDACC patients and caregivers. It is a long cross way bridge over the road and at dusk one could see the colored sky and the lights of the cars in a parade down the streets. The cross way links the second floor to each building so one does not have to cross the busy street or get into inclement weather. I entered the area of the Rotary House where there is a restaurant and lo and behold a real bar with alcohol. Just what I needed. It had a very nice setting with just a few people having drinks and dinner. I sat at the bar and treated myself to a glass of Pinot Grigio and a very good French Onion Soup. I slowly enjoyed both items. It was my Oasis that let me escape for a little while.
When I made it back to the room, the Georgia Bulldog and Tech game was on. At least it was a game that had teams that meant something to me. At halftime Joe said he wanted Chinese Food so I left to go back to the hotel and walk Max. I ordered the food on line from P F Changs and picked it up at 10PM then headed back to Joe. He was so excited about some good tasting food. He loved the Hot and Sour Soup, the Spring Rolls, and Mongolian Beef. The restaurant gave us 10 fortune cookies so I handed them out to the nurses who were on duty. We watched a repeat of Saturday Night Live then called it a night. Joe had finally finished his last Cyclophophamide chemo which took 3 days to complete.
Now it is Sunday in the wee hours where they drew Joe's blood at 5:30AM. It was the first time I woke up during the night. About 8:30 AM the nurse's aid, Miss Grumpy with Loretta Lynn hair, was having issues taking Joe's blood pressure with the machine. She tried it several times. She pulled Joe's bandage from the blood draw 3 hours before. She started to pump up the blood pressure wrap and the puncture point from the blood draw, spurted out. Boy that caused her by surprise. She ran to the bathroom to get those coarse brown paper towels. With Joe's low platelets, he does not clot in 15 minutes like one should. She did not do that again. LOL. Joe and I laughed after she left the room since she was the only person who had issues with the blood pressure machine on Joe.
The Vinstrine chemo took only 15 minutes then they started the "A" chemo whose nickname is the "Red Devil". Yes, the liquid is red in color and the adverse effects are horrific. I read about it the night before and it would scare anyone. I had gone to take care of Max and attend church at St, Philips Presbyterian on San Felipe Blvd when the doctor came but Joe said that he was optimistic with the results so far. The doctor did order two units of red blood since Joe's hemoglobin was down to 7.20 which is very low. Platelets are at 55 so Joe did not need a platelet transfusion. Yeah!
When I got back to be with Joe, we were hoping to be able to watch the Falcon Football game but we were so disappointed that it was not on here locally. Joe could not leave the room and I was not going to go and see it some place when he could not. My oldest son, Keith, had emailed me and ask how things were going. I told him we were still in the hospital and the game was unavailable here. Keith came to the rescue and let us use his on-line Direct TV NFL Package game account. It meant he could not watch it which is a big thing since he could not watch it since we were using it. What a special gift to us and appreciated so much! It helped made the time go faster with being able to watch our team. They won the game over the Green Bay Packers so we were very happy.
About 7:20 PM Joe said he was hungry for some BBQ from Goode'sMcDonalds not having hot fries ready and waiting 15 minutes for them and they forgot the salt. More stupid traffic lights working out of sync. Getting to the parking garage and not being able to find my prepaid parking token. My arms weak from carrying stuff back to the room. In the elevator there was a tall man and I started that I was worn out. He said he knew what I meant. He said he is from Seattle, Washington and he has been flying back and forth since May while his wife has an advanced stage of Ovarian Cancer. Chemo did not work on her for 4 years. They wanted to have her get a Bone Marrow Transplant but the Hutch Hospital would not give it to her but MDACC would thus giving them hope. Her kidneys had shut down and had dialysis and was admitted into ICU. He was arriving from the airport to be with her and she had gained consciousness this afternoon and kidneys were starting to work. He was to fly back out tomorrow to Seattle. Well, that was so sad. So that made me so sad that all my stress accumulated and I had some tears going up the elevator to the 9th floor. I told Joe the tears was just from stress and just feeling sorry for myself. I needed to be hugged and loved. So we ate our BBQ on the small hospital bed together. For two hours we stayed that way laying next to each other. I just felt so alone.
Since I had to go back to the hotel to take care of Max, I decided to stay the night there to give me a break from the hospital. It just would be too much to go back and forth again. I needed some R and R or I should say ESCAPE.
So that is it. Good night, God be with you.
Saturday, November 27, 2010
Day after Thanksgiving
Joe and I slept through the night at the hospital pretty good. I had assistance with my Xanax and Joe had assistance with benedryl. I did not wake up for good until about 9AM. The rooms' temperature is kept more moderately thus I am not freezing like the first two visits.
About 10:30 AM I headed back to the studio to walk Max and play with him a bit with Charlie, his rubber chicken. I gathered up a few things then head to Panera Bread to enjoy my sesame bagel. At Randall's Grocery I picked up some Diet Coke and two newspapers: USA Today and the Houston Chronicle. Next stop was Target to get a duplicate supply of makeup for the hospital room for me, small traveler's size scope for Joe and some warm PJ's for yours truly. For lunch I stopped by the Brown Bag Deli for a great rare roast beef sandwich with extra horseradish sauce and sat down and read the USA Today, A real treat for me to leisurely eat lunch and read the paper which is one of the luxuries I enjoy but have missed over the last month. My car was parked right in front of Chicos so I thought I would take a look for a warm sweater. Luckily it was not crowded at all and I found a long purple crowl neck sweater for $26 down from the regular price of $69.
Joe was comfortably sitting up after eating some spaghetti with meat sauce with cheese bread. He remembered to get me a copy of his latest blood tests where the white blood cells went down a bit and his red blood counts all improved to a more acceptable level. He was in good humor and smiling. He was happy to have me back when he got his next cyclophosamide chemo at 1PM. The doctor came by and stated that all was going smoothly. They gave Joe some latrix to get rid of more fluid since he was taking more in than going out, Some some his electrolytes levels were off but they do a great job here in watching and tending to whatever a patient needs. The 3 hour chemo went without a hitch and we both took a long nap since I could not keep my eyes open.
Joe wanted a pizza from Luigi's on Almeda about 15 minutes from the hospital. Oh my, he enjoyed it so much, He kept stating how good it was. After the pizza party, I went back to the hotel to tend to Max and play with him a bit. I got back to MDACC about 10:25 PM in time to watch Leno with Joe but it was a repeat. We ended up watching "Word According to Eli" with no commercials since the hospital has movies on demand with no additional cost. Joe and I laid next to each other with his arm around me as we watched the movie. The nurses would come in and see Joe and I snuggled next to each other and they would smile. I sure it was strange to see two 60 year old somethings snuggled up in a single size hospital bed. Aw Shucks!
It is now 1:10 and the next cyclophosmiade chemo treatment via the IV is being given to Joe for the next three hours which he should sleep right through it.
Yes, it was a calm day in Houston for Joe and Bonnie. We are thankful for it.
Thank you for those who have left comments on my blog site. I love reading them and appreciate the time it took you to write them.
Ciao!
About 10:30 AM I headed back to the studio to walk Max and play with him a bit with Charlie, his rubber chicken. I gathered up a few things then head to Panera Bread to enjoy my sesame bagel. At Randall's Grocery I picked up some Diet Coke and two newspapers: USA Today and the Houston Chronicle. Next stop was Target to get a duplicate supply of makeup for the hospital room for me, small traveler's size scope for Joe and some warm PJ's for yours truly. For lunch I stopped by the Brown Bag Deli for a great rare roast beef sandwich with extra horseradish sauce and sat down and read the USA Today, A real treat for me to leisurely eat lunch and read the paper which is one of the luxuries I enjoy but have missed over the last month. My car was parked right in front of Chicos so I thought I would take a look for a warm sweater. Luckily it was not crowded at all and I found a long purple crowl neck sweater for $26 down from the regular price of $69.
Joe was comfortably sitting up after eating some spaghetti with meat sauce with cheese bread. He remembered to get me a copy of his latest blood tests where the white blood cells went down a bit and his red blood counts all improved to a more acceptable level. He was in good humor and smiling. He was happy to have me back when he got his next cyclophosamide chemo at 1PM. The doctor came by and stated that all was going smoothly. They gave Joe some latrix to get rid of more fluid since he was taking more in than going out, Some some his electrolytes levels were off but they do a great job here in watching and tending to whatever a patient needs. The 3 hour chemo went without a hitch and we both took a long nap since I could not keep my eyes open.
Joe wanted a pizza from Luigi's on Almeda about 15 minutes from the hospital. Oh my, he enjoyed it so much, He kept stating how good it was. After the pizza party, I went back to the hotel to tend to Max and play with him a bit. I got back to MDACC about 10:25 PM in time to watch Leno with Joe but it was a repeat. We ended up watching "Word According to Eli" with no commercials since the hospital has movies on demand with no additional cost. Joe and I laid next to each other with his arm around me as we watched the movie. The nurses would come in and see Joe and I snuggled next to each other and they would smile. I sure it was strange to see two 60 year old somethings snuggled up in a single size hospital bed. Aw Shucks!
It is now 1:10 and the next cyclophosmiade chemo treatment via the IV is being given to Joe for the next three hours which he should sleep right through it.
Yes, it was a calm day in Houston for Joe and Bonnie. We are thankful for it.
Thank you for those who have left comments on my blog site. I love reading them and appreciate the time it took you to write them.
Ciao!
Publish Post
Thursday, November 25, 2010
Thanksgiving 11/25/10
You would think Joe and I would be sad about missing Thanksgiving with our family but we are really OK since we know the ends justify the means. We are working towards the ultimate goal of remission of Joe's very aggressive Mantle Cell Lymphoma. We heard from many members of our family wishing is a Happy Thanksgiving as well as friends. God is so good to us.
We are particularly thankful with Joe's non-reaction to the Rituxan, the monoclonal antibody, which is a real miracle drug. The only thing that happened is that the cheeks on his face got red but that went away in about 30 minutes. The Rituxan was finished about 10:30PM last night then at 1AM they started the first of six, 3-hour chemo of Cyclophosphamide every 12 hours. He has also received via pill form Dexamethasone. I spent the night in the room with Joe just to make sure everything went OK and it did. One issue is that the lab did not come around at 4:30AM to take his blood so the results could be ready for the doctor when he does his rounds. They did not draw blood until 11;30AM. The Floor Doctor did order a unit of blood for Joe since it was obvious that he would need it since his red blood counts were already low. The chemo would make them even lower. I tried to hang around for the regular doctor's visit but he did not come till later in the afternoon and I had plans to attend Thanksgiving Dinner with Marina Peed's family in Huffman, TX.
I picked up Max and off we drove to Huffman with very little traffic on the roads. We got there at 2:05PM and most of the family had arrived. I got to meet so many relatives and they were all warm and made me feel at home. There was a storm of activity in the kitchen and Eileen made sure the crowds stayed out of there. The turduckling and the regular turkey looked perfectly cooked. I so wanted to grab a piece of the luscious looking brown crisp skin of both birds. The TV was turned onto the football games as with most families, the kids playing video games on their various electronic devices, the adult busy talking about anything and everything. Two of the men cut up the birds while the ladies got all the fixings ready for the tables. There were two large tables set up with about 12 people at each table. The dinner was great. After dinner I took to the couch to watch the Dallas/Saints game on TV. During halftime, I fell asleep sitting up which proves that it was a great Thanksgiving meal.
Max and I headed back to Houston to the apartment so I could drop him off then go to the hospital to spend the night with Joe. Marina prepared two huge Thanksgiving plates for Joe as well as two pieces of pie. What a treasure Marina is! You can not help loving her. As I got closer to the apartment, the sky was ablazed with colorful fireworks. It turned out the display was right behind our hotel near the Galleria. My luck the show was just over as I was trying to get in and back out again which the massive traffic jam.
I picked up my red leather jacket, my big sweater, and pillow to bring with me to the hospital since the temperatures will be dropping substantially. It already was 56 degrees at 6:45PM with a drizzle.
Joe was sitting in his chair watching the football game and in a great mood since he continues to do very well. Thank you, God! He said that he got to talk with both our boys, the grandkids, daughter in law as well as Keith's girlfriend, Jennifer. He also spoke with his sister, Donna. I read all the e-mail greetings to Joe which always delights him. I told him about the afternoon. He was so pleased that I was able to escape on my own for awhile with some great people. Amen!
We were not assigned our favorite night shift nurse, Martha, but now have Kim. We asked Kim if there was a blood draw ordered for Joe at 4:30AM. She checked and said it was not on the order. After much convincing, we asked her to call the on call doctor since we were sure that it was needed every night. Sure enough, she did call and we were correct and supposedly it has now been ordered. We shall see. If not, we will make sure that it gets done.
It is now 10:30 PM CST Joe's coloring looks great with all the pre-cancerous spots on his face are all just about gone. They did have to give him some meds that will make him poop all night long since his potassium is high again as it was the last time.
What is puzzling about the results of the blood test from the 11:30AM draw which was after the Rituxan and one Cyclophosamide IV is that his white blood cells went up from 46 to 56. Some of the electrolytes are abnormal but I am sure that they will take care of all of that. I will make sure I am here when the doctor makes his rounds in the morning to get an interpretation. Joe's platelets are up to 88 which is good progress.
Good Night! I will not be mingling with the shopping crowds on Black Friday. I just am too tired to do that. I was surprise to see on my drive to Huffman today quite a crowd at Walmart. Good Grief!
Ciao!
We are particularly thankful with Joe's non-reaction to the Rituxan, the monoclonal antibody, which is a real miracle drug. The only thing that happened is that the cheeks on his face got red but that went away in about 30 minutes. The Rituxan was finished about 10:30PM last night then at 1AM they started the first of six, 3-hour chemo of Cyclophosphamide every 12 hours. He has also received via pill form Dexamethasone. I spent the night in the room with Joe just to make sure everything went OK and it did. One issue is that the lab did not come around at 4:30AM to take his blood so the results could be ready for the doctor when he does his rounds. They did not draw blood until 11;30AM. The Floor Doctor did order a unit of blood for Joe since it was obvious that he would need it since his red blood counts were already low. The chemo would make them even lower. I tried to hang around for the regular doctor's visit but he did not come till later in the afternoon and I had plans to attend Thanksgiving Dinner with Marina Peed's family in Huffman, TX.
I picked up Max and off we drove to Huffman with very little traffic on the roads. We got there at 2:05PM and most of the family had arrived. I got to meet so many relatives and they were all warm and made me feel at home. There was a storm of activity in the kitchen and Eileen made sure the crowds stayed out of there. The turduckling and the regular turkey looked perfectly cooked. I so wanted to grab a piece of the luscious looking brown crisp skin of both birds. The TV was turned onto the football games as with most families, the kids playing video games on their various electronic devices, the adult busy talking about anything and everything. Two of the men cut up the birds while the ladies got all the fixings ready for the tables. There were two large tables set up with about 12 people at each table. The dinner was great. After dinner I took to the couch to watch the Dallas/Saints game on TV. During halftime, I fell asleep sitting up which proves that it was a great Thanksgiving meal.
Max and I headed back to Houston to the apartment so I could drop him off then go to the hospital to spend the night with Joe. Marina prepared two huge Thanksgiving plates for Joe as well as two pieces of pie. What a treasure Marina is! You can not help loving her. As I got closer to the apartment, the sky was ablazed with colorful fireworks. It turned out the display was right behind our hotel near the Galleria. My luck the show was just over as I was trying to get in and back out again which the massive traffic jam.
I picked up my red leather jacket, my big sweater, and pillow to bring with me to the hospital since the temperatures will be dropping substantially. It already was 56 degrees at 6:45PM with a drizzle.
Joe was sitting in his chair watching the football game and in a great mood since he continues to do very well. Thank you, God! He said that he got to talk with both our boys, the grandkids, daughter in law as well as Keith's girlfriend, Jennifer. He also spoke with his sister, Donna. I read all the e-mail greetings to Joe which always delights him. I told him about the afternoon. He was so pleased that I was able to escape on my own for awhile with some great people. Amen!
We were not assigned our favorite night shift nurse, Martha, but now have Kim. We asked Kim if there was a blood draw ordered for Joe at 4:30AM. She checked and said it was not on the order. After much convincing, we asked her to call the on call doctor since we were sure that it was needed every night. Sure enough, she did call and we were correct and supposedly it has now been ordered. We shall see. If not, we will make sure that it gets done.
It is now 10:30 PM CST Joe's coloring looks great with all the pre-cancerous spots on his face are all just about gone. They did have to give him some meds that will make him poop all night long since his potassium is high again as it was the last time.
What is puzzling about the results of the blood test from the 11:30AM draw which was after the Rituxan and one Cyclophosamide IV is that his white blood cells went up from 46 to 56. Some of the electrolytes are abnormal but I am sure that they will take care of all of that. I will make sure I am here when the doctor makes his rounds in the morning to get an interpretation. Joe's platelets are up to 88 which is good progress.
Good Night! I will not be mingling with the shopping crowds on Black Friday. I just am too tired to do that. I was surprise to see on my drive to Huffman today quite a crowd at Walmart. Good Grief!
Ciao!
Wednesday, November 24, 2010
A Surprise Visit and Checking in
Tuesday was Joe's last day off before heading back into MDACC for his next chemo regimen. Marina Peed, a MPD Greater Atlanta Support Group member, had flown in from Atlanta with her family to spend the Thanksgiving holiday at her Mom's ranch in Huffman, TX. Her Mom's name is Eileen and I found out where Marina inherited her outgoing personality and positive attitude with a huge zest for living as well as having a heart of gold - all from her Mom. Huffman is about one hour northeast of Houston where most of the homesites have acreage for horses.
Marina and her daughter ran to greet us as we stepped out of our car. Three friendly dogs of various mixed breeds also greeted us and Max. Hugs and great greetings were shared. Marina introduced us to Eileen, her Mom, who also hugged us as if she had known us for years. Eileen took us on a tour of her ranch where she has five beautiful horses. Jack, an 18 year old palomino, is a horse she saved from abuse and neglect by its owner. She made the owner an offer that he could not refuse or she would report him to ASCPA. You should see how handsome Jack is now with the love and great care Eileen has given him. Three others were auburn and black. There was a white horse staying away from the darker horses and I wondered why. Eileen stated that horses are racists that they alienate the lighter colored horses. Eileen works full time and still manages to take care of her beloved animals which is a huge job. What energy she has! She states that this is her passion and gives her zest for living.
While we were at Eileen's ranch hanging around talking around the kitchen bar, I got a text message from Dr. Elliott Winton, top hematologist for lymphoma and myelofibrosis at Emory Winship Cancer Center that he accepted Joe as his patient so Joe could continue the chemotherapy in Atlanta till April 2011. It has given me such peace of mind knowing that is all set up and Joe will get the best of care under him and agreed to collaborate with Dr. Romaguera at MDACC. Thanks be to God since He answered my prayers.
Marina cooked a fabulous meal with a tasty perfectly cooked roast pork, home fries with caramelized onions which were the "best" that I ever had, and green beans, and rolls as well as lots of wine. Marina said a wonderful touching Grace before the meal. We had wonderful fun conversations over dinner. Joe was in heaven being out in wide open spaces and in a real home. Having a terrific homecooked meal before having to check back into the hospital was perfect to boost his spirits. Max was a perfect gentleman as he sat on the floor while we ate without making a sound. Max also enjoyed his day at the ranch. Eileen and Marina invited me to come to their Thanksgiving feast with 23 guests. Oh that sounds like so much fun. They also believe like me that more makes it merrier. I will bring Joe a Thanksgiving prepared dish from what is left when I return to stay with him Thanksgiving evening.
We had an early 8:15AM appointment at MDACC Lymphoma department to get Joe his Fast Track Labs work done so it would be ready for our important meeting with Dr. Romaguera at 10AM. Goley, his clinical nurse, saw Joe first and asked him the 100 questions on how he felt. Joe lamented how much he missed eating salads. She said Romaguera is stricter than the younger doctors and way more cautious. Romaguera came in and stated that he was pleased with Joe's progress and his adjustment to the chemo. He stated Joe's white blood count went up to 46 but that is offset by Joe's neutrophils which were at 33.12. In this case the high white blood count is neutrophils and not lymphoma which is good news. Joe's platelets (77) and red blood counts are holding somewhat steady but I am sure that he will need red blood transfusions when he does the chemo. Romaguera also stated that this time with Part A Joe will be given the full dosage since they were cautious the first time as well as starting this round with Rituxin and also give the "A" part of the HyperCVAD which they did not do on the first Part A. Joe and I tried to pin Romaguera down as to when we could go back to Atlanta. He told us that he would like Joe to stay around for two weeks after the chemo that starts today. He wants to make sure he is stable and also wants to get CT scan and a BMB completed so we can see what changes have occurred before he releases us from MDACC. Now it may be 12/15 or even later before we get back home. Shucks!
Shortly after Joe was admitted back as an in patient in room P910. We know that when a bed is available that he will be moved to the lymphoma ward as he was the other two times. We already had Joe's bags packed so we got them out of the car and then went to check in where we were greeted very quickly by the nursing team. I unpacked Joe's bag and put everything away. I had Joe give me a list of stuff he still needed such as white socks, eye drops, orange juice, V8, fig newtons, and toothpaste. The nurse came in to go over the Doctor's orders for chemo and all it had was the "C" and the "R". I told her that it was wrong and that Romaguera had told us that Joe was to get HyperCVAD-R. The nurse wisely listened to me without any fuss and called Dr. Romaguera and he told her that Mrs. Evans is correct and that corrected doctor orders would be forthcoming. When she received the new orders, she made a copy for me since they know that I want a copy of the orders and lab results.
I left the hospital room at 5:15 PM to go take care of Max, get my stuff, go to the store for Joe and get something decent to eat. As I got to the hotel, Joe calls me and states that they are going to start the Rituxan at 6PM which would not give me much time to do what I had to do and get there in time. I decided to get my dinner later at the hospital cafeteria so I got back to his room at 6:30 PM and he had his first 15 minutes of 50 ml/hour of the Rituxan. They would take Joe's vital signs every 15 minutes and they kept a close eye on him. I was waiting for him to hit 150 mg since the last time he developed a fever and rigors. Knock on wood and Thanks to God it is now 10:10 pm and Joe's rate of Rituxan is now at the maximum rate of 400ml/hour and will stay that way until the IV bag is finished unless he has issues. The only little thing Joe had so far is red cheeks on his face but no fever. Joe is in great humor and is cracking jokes with the nurses who are so sweet and caring. We got a great crew for this 12 hour shift that runs from 7PM to 7AM.
Tomorrow is Thanksgiving. Joe and I have so much to be thankful for. God has blessed us with our loving families, friends, church, MDACC and now Emory University Hospital. We are thankful for all the powerful prayers that have lifted Joe and me up spiritually and given us the strength to continue this journey. Thank you for being there. We feel your love everyday.
Happy Thanksgiving and hug your loved ones and give thanks to all that God has given each and everyone of us.
Ciao!
Marina and her daughter ran to greet us as we stepped out of our car. Three friendly dogs of various mixed breeds also greeted us and Max. Hugs and great greetings were shared. Marina introduced us to Eileen, her Mom, who also hugged us as if she had known us for years. Eileen took us on a tour of her ranch where she has five beautiful horses. Jack, an 18 year old palomino, is a horse she saved from abuse and neglect by its owner. She made the owner an offer that he could not refuse or she would report him to ASCPA. You should see how handsome Jack is now with the love and great care Eileen has given him. Three others were auburn and black. There was a white horse staying away from the darker horses and I wondered why. Eileen stated that horses are racists that they alienate the lighter colored horses. Eileen works full time and still manages to take care of her beloved animals which is a huge job. What energy she has! She states that this is her passion and gives her zest for living.
While we were at Eileen's ranch hanging around talking around the kitchen bar, I got a text message from Dr. Elliott Winton, top hematologist for lymphoma and myelofibrosis at Emory Winship Cancer Center that he accepted Joe as his patient so Joe could continue the chemotherapy in Atlanta till April 2011. It has given me such peace of mind knowing that is all set up and Joe will get the best of care under him and agreed to collaborate with Dr. Romaguera at MDACC. Thanks be to God since He answered my prayers.
Marina cooked a fabulous meal with a tasty perfectly cooked roast pork, home fries with caramelized onions which were the "best" that I ever had, and green beans, and rolls as well as lots of wine. Marina said a wonderful touching Grace before the meal. We had wonderful fun conversations over dinner. Joe was in heaven being out in wide open spaces and in a real home. Having a terrific homecooked meal before having to check back into the hospital was perfect to boost his spirits. Max was a perfect gentleman as he sat on the floor while we ate without making a sound. Max also enjoyed his day at the ranch. Eileen and Marina invited me to come to their Thanksgiving feast with 23 guests. Oh that sounds like so much fun. They also believe like me that more makes it merrier. I will bring Joe a Thanksgiving prepared dish from what is left when I return to stay with him Thanksgiving evening.
We had an early 8:15AM appointment at MDACC Lymphoma department to get Joe his Fast Track Labs work done so it would be ready for our important meeting with Dr. Romaguera at 10AM. Goley, his clinical nurse, saw Joe first and asked him the 100 questions on how he felt. Joe lamented how much he missed eating salads. She said Romaguera is stricter than the younger doctors and way more cautious. Romaguera came in and stated that he was pleased with Joe's progress and his adjustment to the chemo. He stated Joe's white blood count went up to 46 but that is offset by Joe's neutrophils which were at 33.12. In this case the high white blood count is neutrophils and not lymphoma which is good news. Joe's platelets (77) and red blood counts are holding somewhat steady but I am sure that he will need red blood transfusions when he does the chemo. Romaguera also stated that this time with Part A Joe will be given the full dosage since they were cautious the first time as well as starting this round with Rituxin and also give the "A" part of the HyperCVAD which they did not do on the first Part A. Joe and I tried to pin Romaguera down as to when we could go back to Atlanta. He told us that he would like Joe to stay around for two weeks after the chemo that starts today. He wants to make sure he is stable and also wants to get CT scan and a BMB completed so we can see what changes have occurred before he releases us from MDACC. Now it may be 12/15 or even later before we get back home. Shucks!
Shortly after Joe was admitted back as an in patient in room P910. We know that when a bed is available that he will be moved to the lymphoma ward as he was the other two times. We already had Joe's bags packed so we got them out of the car and then went to check in where we were greeted very quickly by the nursing team. I unpacked Joe's bag and put everything away. I had Joe give me a list of stuff he still needed such as white socks, eye drops, orange juice, V8, fig newtons, and toothpaste. The nurse came in to go over the Doctor's orders for chemo and all it had was the "C" and the "R". I told her that it was wrong and that Romaguera had told us that Joe was to get HyperCVAD-R. The nurse wisely listened to me without any fuss and called Dr. Romaguera and he told her that Mrs. Evans is correct and that corrected doctor orders would be forthcoming. When she received the new orders, she made a copy for me since they know that I want a copy of the orders and lab results.
I left the hospital room at 5:15 PM to go take care of Max, get my stuff, go to the store for Joe and get something decent to eat. As I got to the hotel, Joe calls me and states that they are going to start the Rituxan at 6PM which would not give me much time to do what I had to do and get there in time. I decided to get my dinner later at the hospital cafeteria so I got back to his room at 6:30 PM and he had his first 15 minutes of 50 ml/hour of the Rituxan. They would take Joe's vital signs every 15 minutes and they kept a close eye on him. I was waiting for him to hit 150 mg since the last time he developed a fever and rigors. Knock on wood and Thanks to God it is now 10:10 pm and Joe's rate of Rituxan is now at the maximum rate of 400ml/hour and will stay that way until the IV bag is finished unless he has issues. The only little thing Joe had so far is red cheeks on his face but no fever. Joe is in great humor and is cracking jokes with the nurses who are so sweet and caring. We got a great crew for this 12 hour shift that runs from 7PM to 7AM.
Tomorrow is Thanksgiving. Joe and I have so much to be thankful for. God has blessed us with our loving families, friends, church, MDACC and now Emory University Hospital. We are thankful for all the powerful prayers that have lifted Joe and me up spiritually and given us the strength to continue this journey. Thank you for being there. We feel your love everyday.
Happy Thanksgiving and hug your loved ones and give thanks to all that God has given each and everyone of us.
Ciao!
Tuesday, November 23, 2010
Smoothe Operator
It was a nice lazy morning as we slept in with nothing on the day's itinerary. We started out at Panera Bread where Joe had no coffee which is very strange. He did have some fresh orange juice and a half of a cobblestone as I had my usual sesame seed bagel toasted till it is light brown with light cream cheese on the side. On my iPhone Yelp application I found Mike's Barber Shop nearby so we headed over there to get Joe's head shaved. There was a sign outside that stated hair cuts for $6.00. How in the world are they able to charge that little these days? I figured there had to be a catch but how big of a catch could it be. There were four lady barbers who had customers in their barber chairs. We only waited about a minute when Francis became free. She asked us what we wanted an we told her to shave it all off. She looked at us like are you sure? Absolutely, shave it off. I took several cute photos of good natured Joe getting his hair shaved off. Francis was gentle and thorough. She also took care of the hair on his ears and trimmed Joe's eyebrows. Total tab was $6.00! We handed her $10 and happily left the shop.
A Houstonian told us about the warehouse district on the other side of 59 South so we decided to give it a try and see what was there but we had no luck and I was not in the mood to shop anyway. I have not been in a shopping mode since I got here. There is some fabulous shopping in Houston but I can not shop unless I need something or in the mood. We found ourselves near Petsmart so both Joe and I went in to get Max some more dry dog food and a chicken toy whose name is Charlie. So back to the studio apartment we went and Max loved Charlie, the rubber squeaking chicken toy.
We decided to see a movie at 12:05 PM. The movie was Denzel Washington's "Unstoppable" about the runaway train. It was an entertaining two hours and Joe enjoyed it since he loves chase movies. It is worth seeing. Across the street from the theater we stopped at Costco to get some more multi-vitamins. Joe got some more OJ and I got some pretzels to snack on.
Now it was time for the old mid day nap for the both of us. We had no lunch since Joe devoured two bags of popcorn. He will tell us I ate a bunch of it but do not believe him. I never saw him eat popcorn and enjoy it as much as he did at the movies.
We had dinner under the full moon and comfortable temperatures at La Vista. Joe had Chicken Capelinni and I had Cheese Ravioli with Vodka Sauce. Yummy. For dessert we had tiramasu but it was enough for four people so we took half of it home with us. I am sure that it will be gone by the time the sun rises in the morning.
While we were having dinner, I got a wonderful phone call from Marina Peed from Atlanta who flew into Houston on Saturday with her family for Thanksgiving with her Mom who lives an hour north of Houston. She invited Joe, Max and I to her Mom's ranch in Huffman on Tuesday night which is perfect for Joe since he goes back for his next chemo treatment on Wednesday. Marina is a ball of happy energy and she never met a person she did not like. We know Marina from our meetings of the Greater Atlanta MPD Support Group. She says her Mom has a small ranch with several horses and three dogs and to bring Max since he would fit in. Joe and I are looking forward to meeting Marina's family and her Mom. What a special time we will have! God has sent us another blessing that we did not expect or see coming.
Tonight I was on the Leukemia/Lymphoma Support Line that was helpful in giving me guidance on what to do next. They recommended that I start to make arrangements for Joe's chemo care in Atlanta. I search the web and sent an e-mail to Dr. Elliott Winton at Winship Cancer Center at Emory Midtown. He specializes in blood diseases such a Lymphoma and Myelofibrosis. I pray that he accepts Joe as a patient or refers us to someone at Emory who specializes in Mantle Cell Lymphoma. God is directing me. I know that his is the right thing to do.
Joe has gone to bed with Max laying again next to him also asleep. Max got wore out chasing Charlie around the studio. I must have thrown Charlie on the bed 25 times. When Joe took Max out for his nightly walk, I put Charlie asleep in my clothes draw. When Max came in from outside, he looked for Charlie right away but took it well and went to bed with Joe.
It has been a good day. Thank you Father Almighty for helping Joe and me and granting us blessings along the way.
Ciao!
A Houstonian told us about the warehouse district on the other side of 59 South so we decided to give it a try and see what was there but we had no luck and I was not in the mood to shop anyway. I have not been in a shopping mode since I got here. There is some fabulous shopping in Houston but I can not shop unless I need something or in the mood. We found ourselves near Petsmart so both Joe and I went in to get Max some more dry dog food and a chicken toy whose name is Charlie. So back to the studio apartment we went and Max loved Charlie, the rubber squeaking chicken toy.
We decided to see a movie at 12:05 PM. The movie was Denzel Washington's "Unstoppable" about the runaway train. It was an entertaining two hours and Joe enjoyed it since he loves chase movies. It is worth seeing. Across the street from the theater we stopped at Costco to get some more multi-vitamins. Joe got some more OJ and I got some pretzels to snack on.
Now it was time for the old mid day nap for the both of us. We had no lunch since Joe devoured two bags of popcorn. He will tell us I ate a bunch of it but do not believe him. I never saw him eat popcorn and enjoy it as much as he did at the movies.
We had dinner under the full moon and comfortable temperatures at La Vista. Joe had Chicken Capelinni and I had Cheese Ravioli with Vodka Sauce. Yummy. For dessert we had tiramasu but it was enough for four people so we took half of it home with us. I am sure that it will be gone by the time the sun rises in the morning.
While we were having dinner, I got a wonderful phone call from Marina Peed from Atlanta who flew into Houston on Saturday with her family for Thanksgiving with her Mom who lives an hour north of Houston. She invited Joe, Max and I to her Mom's ranch in Huffman on Tuesday night which is perfect for Joe since he goes back for his next chemo treatment on Wednesday. Marina is a ball of happy energy and she never met a person she did not like. We know Marina from our meetings of the Greater Atlanta MPD Support Group. She says her Mom has a small ranch with several horses and three dogs and to bring Max since he would fit in. Joe and I are looking forward to meeting Marina's family and her Mom. What a special time we will have! God has sent us another blessing that we did not expect or see coming.
Tonight I was on the Leukemia/Lymphoma Support Line that was helpful in giving me guidance on what to do next. They recommended that I start to make arrangements for Joe's chemo care in Atlanta. I search the web and sent an e-mail to Dr. Elliott Winton at Winship Cancer Center at Emory Midtown. He specializes in blood diseases such a Lymphoma and Myelofibrosis. I pray that he accepts Joe as a patient or refers us to someone at Emory who specializes in Mantle Cell Lymphoma. God is directing me. I know that his is the right thing to do.
Joe has gone to bed with Max laying again next to him also asleep. Max got wore out chasing Charlie around the studio. I must have thrown Charlie on the bed 25 times. When Joe took Max out for his nightly walk, I put Charlie asleep in my clothes draw. When Max came in from outside, he looked for Charlie right away but took it well and went to bed with Joe.
It has been a good day. Thank you Father Almighty for helping Joe and me and granting us blessings along the way.
Ciao!
Sunday, November 21, 2010
A "U" Turn
On Saturday we were not in a rush to get on the road to San Antonio since the distance is only 196 miles with all interstate highways. Joe insisted on driving the entire way because I have had some issues with pain down my right arm caused by a bulging disc and disc pressing on top of each other. It was diagnosed after I got to Houston from Emory Orthopedic from tests I had before we left Atlanta. The pain from the shoulder down to the hand has been getting worse and worse and I even went to an internist here in Houston to give me pain pills and an anti-inflammatory prescription so I could hold out till I got back to Atlanta. There is no way I could have surgery here in Houston under the circumstances.
The drive to San Antonio was only three hours with no hassles and Max was excellent the entire time. Even after stopping at a rest stop Joe wanted to continue driving so I let him. Little did I know that would be a huge mistake in judgment. We got to La Quinta near the Riverwalk about 3:15PM. I had messed up the reservation and only did Sunday night but the registration staff got us a room for both nights although we had to wait for about an hour for our room on the 7th floor. My mistake, I went to the back parking lot which I thought was the self parking lot. Joe took the duffel bag and cooler as I handled an excited Max. But not more than a walk across the street, Joe has to stop and sit and rest. He looked strange and so pale that it startled me. Around to the front of La Quinta is a short way but it was trying on Joe so when we got to the lobby, I insisted he just sit on the couch and wait as I got us registered. I told Joe we had to wait till the room we wanted was cleaned up within 10 minutes time which turned out to be an hour. I found out where the real self parking lot and I went back and drove the car to the right area. It was about 4:30PM when we got up to our lovely large room which Joe was pleased with. The room has a reclining chair that Joe took to right away and just chilled out. He asked me to find him a Dr. Pepper and Fritos so I started my search. Of course the first vending machine would not take my money but I finally was directed to one near the conference rooms. Joe was patiently waiting and was glad that my venture found exactly was he desired. He fell asleep in the recliner and I in the luxury sheeted bed with fluffy soft pillows. We did not wake up till 7:55PM and we had reservations at Baudo's at the Riverwalk at 8:30PM. The Riverwalk started right across the street from our hotel by going through Macys into Riverwalk Mall. Really cool when one comes to the River as you walk across Macys first floor. Riverwalk was full of people and lots of families. There were riverboat taxis taking people on tours up and down the river. Since we had never been here before, we had no idea how big the area was and how it meandered. The river is bordered by granite with wide windy sidewalks on both sides with enormous fully grown live oak trees with flowering gardens and with Venice arched bridges to get from one side to the other. There was lots of happy friendly people strolling all about. Also there are scores and scores of restaurants and hotels all along Riverwalk with several floors and patios with outside tables. Joe had a hard time walking and I wanted him to rest on the benches since he looked ghostly and breathing heavy. Keep in mind that we had not walked very far at all. We came to a fork in the river where we had to decided to go one way or the other. The Riverwalk maps do not show the individual restaurants or hotels so I called the restaurant since I knew Joe could not handle a wild goose chase. I got the specifics after several failing tries at communication with the restaurant staff and the told me that we were a short walk away. We had to walk over two bridges to the other side. The restaurant was a short way as they said. I had Joe sit down in a chair right away to rest while I got our table. The hostess proceeded to take us to the back of the restaurant when I stopped her to alert her that I had requested a river view table when I made the reservation so we go back to the front and waited a few minutes while our table was cleared off. It was such a lovely setting being outside along the river being able to watch the boats go by as well as the masses of people strolling along the riverbanks. The large live oak trees made a canopy over the riverwalks and river. The colorful lights from the restaurants and hotels made it a magical showcase. We could hear various bands playing along the river that also added ambiance to the comfortable cool temperatures on a clear night. We took our time ordering and eating. Baudros is known for their tableside making of fresh guacamole. It was super good. Joe and I both had steaks
I woke up about 8AM on Sunday morning to take Max out and walk around a bit but Joe had awaken just as I was going out the door. So I told him my plan of heading back to Houston and why. Thankfully, he agreed with me stating he did not realize how weak he was and was sorry to ruin the weekend. I told him he was my only concern and someday we could come back to this fabulous city and tour the Riverwalk and Alamo. After walking Max I packed up the room and Joe and I headed down to a nice breakfast of orange juice, fresh waffles, and lean sausage. We packed up the car and let Joe wait there as I ran up to get Max and check out of the hotel which went very smoothly. I canceled our dinner reservations and also the Segway Tour at 2PM before leaving the parking lot.
It was an easy three hour drive back to Houston. I unpacked our bag and cooler as Joe rested. I drove most of the way back and Joe drove an hour. Joe laid on the couch and watched football as he snoozed in and out. I took a pain pill and crashed into bed for several hours.
Again, the Falcon football game was not on TV. So we drove over to the sports bar restaurant called Champs which was in a very pretty shopping center about a mile from out hotel. There we watched our Falcons win over the Rams and had linner (lunch/dinner). When we got back to the room, we both changed into comfortable clothes and just took it easy. We enjoyed watching the American Music Awards where there were many great acts by notable singers and groups.
Our next two days are devoted for Joe to rest. He already looks better this evening and does not looks as ghastly as he did in San Antonio. He needs to be in decent shape to start the next round of chemo on Wednesday.
Ciao!
The drive to San Antonio was only three hours with no hassles and Max was excellent the entire time. Even after stopping at a rest stop Joe wanted to continue driving so I let him. Little did I know that would be a huge mistake in judgment. We got to La Quinta near the Riverwalk about 3:15PM. I had messed up the reservation and only did Sunday night but the registration staff got us a room for both nights although we had to wait for about an hour for our room on the 7th floor. My mistake, I went to the back parking lot which I thought was the self parking lot. Joe took the duffel bag and cooler as I handled an excited Max. But not more than a walk across the street, Joe has to stop and sit and rest. He looked strange and so pale that it startled me. Around to the front of La Quinta is a short way but it was trying on Joe so when we got to the lobby, I insisted he just sit on the couch and wait as I got us registered. I told Joe we had to wait till the room we wanted was cleaned up within 10 minutes time which turned out to be an hour. I found out where the real self parking lot and I went back and drove the car to the right area. It was about 4:30PM when we got up to our lovely large room which Joe was pleased with. The room has a reclining chair that Joe took to right away and just chilled out. He asked me to find him a Dr. Pepper and Fritos so I started my search. Of course the first vending machine would not take my money but I finally was directed to one near the conference rooms. Joe was patiently waiting and was glad that my venture found exactly was he desired. He fell asleep in the recliner and I in the luxury sheeted bed with fluffy soft pillows. We did not wake up till 7:55PM and we had reservations at Baudo's at the Riverwalk at 8:30PM. The Riverwalk started right across the street from our hotel by going through Macys into Riverwalk Mall. Really cool when one comes to the River as you walk across Macys first floor. Riverwalk was full of people and lots of families. There were riverboat taxis taking people on tours up and down the river. Since we had never been here before, we had no idea how big the area was and how it meandered. The river is bordered by granite with wide windy sidewalks on both sides with enormous fully grown live oak trees with flowering gardens and with Venice arched bridges to get from one side to the other. There was lots of happy friendly people strolling all about. Also there are scores and scores of restaurants and hotels all along Riverwalk with several floors and patios with outside tables. Joe had a hard time walking and I wanted him to rest on the benches since he looked ghostly and breathing heavy. Keep in mind that we had not walked very far at all. We came to a fork in the river where we had to decided to go one way or the other. The Riverwalk maps do not show the individual restaurants or hotels so I called the restaurant since I knew Joe could not handle a wild goose chase. I got the specifics after several failing tries at communication with the restaurant staff and the told me that we were a short walk away. We had to walk over two bridges to the other side. The restaurant was a short way as they said. I had Joe sit down in a chair right away to rest while I got our table. The hostess proceeded to take us to the back of the restaurant when I stopped her to alert her that I had requested a river view table when I made the reservation so we go back to the front and waited a few minutes while our table was cleared off. It was such a lovely setting being outside along the river being able to watch the boats go by as well as the masses of people strolling along the riverbanks. The large live oak trees made a canopy over the riverwalks and river. The colorful lights from the restaurants and hotels made it a magical showcase. We could hear various bands playing along the river that also added ambiance to the comfortable cool temperatures on a clear night. We took our time ordering and eating. Baudros is known for their tableside making of fresh guacamole. It was super good. Joe and I both had steaks
I woke up about 8AM on Sunday morning to take Max out and walk around a bit but Joe had awaken just as I was going out the door. So I told him my plan of heading back to Houston and why. Thankfully, he agreed with me stating he did not realize how weak he was and was sorry to ruin the weekend. I told him he was my only concern and someday we could come back to this fabulous city and tour the Riverwalk and Alamo. After walking Max I packed up the room and Joe and I headed down to a nice breakfast of orange juice, fresh waffles, and lean sausage. We packed up the car and let Joe wait there as I ran up to get Max and check out of the hotel which went very smoothly. I canceled our dinner reservations and also the Segway Tour at 2PM before leaving the parking lot.
It was an easy three hour drive back to Houston. I unpacked our bag and cooler as Joe rested. I drove most of the way back and Joe drove an hour. Joe laid on the couch and watched football as he snoozed in and out. I took a pain pill and crashed into bed for several hours.
Again, the Falcon football game was not on TV. So we drove over to the sports bar restaurant called Champs which was in a very pretty shopping center about a mile from out hotel. There we watched our Falcons win over the Rams and had linner (lunch/dinner). When we got back to the room, we both changed into comfortable clothes and just took it easy. We enjoyed watching the American Music Awards where there were many great acts by notable singers and groups.
Our next two days are devoted for Joe to rest. He already looks better this evening and does not looks as ghastly as he did in San Antonio. He needs to be in decent shape to start the next round of chemo on Wednesday.
Ciao!
Friday, November 19, 2010
Four Days off before next round of Chemo
Back to Back check in days were achieved without a transfusion. Good news indeed! Joe's Red Blood Cell Count (RBC) is stable with a current count of 3.00 while Wednesday's was 3.13 ( normal is 4.5-6.0). Joe's Hemoglobin (HG) is stable with a current count of 8.7 while Wednesday's was 8.8 (normal is 14-18). Joe's Hematocrit (HC) is stable with a current count of 26.9 while Wednesday's was 27.9 (normal is 40-54). The really good news were Joe's platelets that went from 27 on Wednesday to a soaring 73 today (normal is 140-440). There was not so good news with Joe's White Blood Count (WBC) jumping from a normal 9.9 to 39.3 (normal 4-11). It is a concern of mine that his Mantle Cell Lymphoma is growing once again. The PRN was not overly concerned and told Joe to cease taking the Neupogin shots which enriches the growth of white blood cells. I wonder if they are the bad guys or the good guys. Another piece of good news is that Joe will not need to check back in till next Wednesday when he is scheduled to start the next round of HyperCVD-R chemotherapy. Joe will probably be in the hospital till Monday with the next week to have several check ins to see what is happening. We pray for good results so we can head back to Atlanta and do the every 21 days chemo at Emory University Hospital downtown at the Winship Cancer Center. We shall see.
I had the infusion department check Joe's PICC point since when I changed his dressing yesterday there seem to be a bunch of blood on the interior bandage. The expert nurse took a look at it and said it looked good and that I was taking good care of it. The tech finished putting his dressing on. In between all the running around at the clinic we had lunch in the cafeteria which is booming with people and a very active place at lunchtime.
As we headed back to the apartment Joe asked me what we were going to do with the four days off. I suggested maybe a short two night trip to San Antonio to visit the Alamo and Riverwalk. Max will go with us after I researched a hotel that would allow pets and not charge large non-refundable deposit. It turned out to be the La Quinta Inn within a block and a half of Riverwalk. I already made dinner reservations at the highly rated Baudo's on the Riverfront at 8:30 PM. Joe is looking forward to getting away and having a change of scenery.
Tonight we had dinner at Outback Steaks several exits south of us. We both enjoyed the petite fillet.Joe always enjoys Outback. Now we are back watching the worse day of the week TV. Right now Joe has boxing on. Ugh! There is nothing interesting on anyway. Tonight I will probably go to bed before Joe since he had a long nap while I worked on the San Antonio plans and the excel spreadsheet graphs that I use to follow Joe's blood counts and look for trends.
Yes, it was another beautiful day in Houston which seems in abundance and we enjoy so much.
Remember the Alamo this weekend where Joe and I will explore and remember the bravery of our frontiersmen. Davy Crockett and Daniel Boone. God watch over our brave men and women who serve our country and give wisdom to our leaders to do the right thing.
Off to the Alamo in the morning!
Ciao!
Bonnie
I had the infusion department check Joe's PICC point since when I changed his dressing yesterday there seem to be a bunch of blood on the interior bandage. The expert nurse took a look at it and said it looked good and that I was taking good care of it. The tech finished putting his dressing on. In between all the running around at the clinic we had lunch in the cafeteria which is booming with people and a very active place at lunchtime.
As we headed back to the apartment Joe asked me what we were going to do with the four days off. I suggested maybe a short two night trip to San Antonio to visit the Alamo and Riverwalk. Max will go with us after I researched a hotel that would allow pets and not charge large non-refundable deposit. It turned out to be the La Quinta Inn within a block and a half of Riverwalk. I already made dinner reservations at the highly rated Baudo's on the Riverfront at 8:30 PM. Joe is looking forward to getting away and having a change of scenery.
Tonight we had dinner at Outback Steaks several exits south of us. We both enjoyed the petite fillet.Joe always enjoys Outback. Now we are back watching the worse day of the week TV. Right now Joe has boxing on. Ugh! There is nothing interesting on anyway. Tonight I will probably go to bed before Joe since he had a long nap while I worked on the San Antonio plans and the excel spreadsheet graphs that I use to follow Joe's blood counts and look for trends.
Yes, it was another beautiful day in Houston which seems in abundance and we enjoy so much.
Remember the Alamo this weekend where Joe and I will explore and remember the bravery of our frontiersmen. Davy Crockett and Daniel Boone. God watch over our brave men and women who serve our country and give wisdom to our leaders to do the right thing.
Off to the Alamo in the morning!
Ciao!
Bonnie
Lean On Me!
Max enjoyed his freedom at the Dog Park today where there were more dogs there than ever. There were two playful, large, friendly, beautiful, muscular Dobermans who loved playing and running. They were gorgeous creatures to watch their body movements and strength. Another perfect fall day in Houston was enjoyed by God's creatures with comfortable temperatures and bright blue skies. Thank you God for the magnificent day to enjoy your gifts.
We dropped Max off at the studio apartment since we were heading to MDACC to meet with one of our Mantle Cell ACOR support list comrades who had an appointment at 2PM with Dr. Romaguera to go over her test results from last week. As we were about to leave, we got a call from the lovely Whitney Wilkinson, future pastor of a blessed Presbyterian Church to be determined. Whitney is currently living with her family in Victoria, TX which is about a two hour drive from Houston. Her voice will brighten any one's day by hearing it. She had invited Joe and me for Thanksgiving with her family in Victoria. Isn't that awesome! We would have accepted, without a doubt, but Joe is being re-admitted to MDACC on the Wednesday before Thanksgiving for Part B of the HyperCVD-R and will be in the hospital till Monday, 11/29. Joe and I considered being in the hospital over Thanksgiving is a good thing since we are so thankful for the medical advances that give Joe a chance at living longer. We are so thankful for the amazing medical staff at MDACC with their loving but professional attention to the physical aspects of chemo but also the emotional aspects for the patient and the caregiver. God is always present in the halls of MDACC. You can feel Him.
Off we went to MDACC to see if we could find Holli Baker, fellow Mantle Cell patient, at the clinic. I was looking for a lady with a pink ribbon on her purse. I had asked several ladies if they were Holli Baker but a gentleman sitting nearby stated the Holli had just stepped into Fast Track to get blood drawn for the labs. The long pony-tailed weathered man was Holli's husband! We walked to meet with one of Joe's favorite blood drawer and when we walked back, there was Holli. She knew that I was Bonnie and Joe was the tall guy next to me. We warmly hugged each other and fell into easy conversation about her journey with Mantle Cell. She had eight long rounds of HyperCVAD and had some rough experiences but she made it through it. She had been in remission for 1.5 years. Holli was very nervous as anyone would be to find out the results of her previous tests to see if she was still in remission. She talked about the foods that she had to stay away from and how Romaguera made her stay away from her grandchildren, teachers she worked with, and had to wear a mask all the time. She told us how she creatively saw her grandchildren through the car windows and spoke with them via cell phones. After awhile the kids knew that they could not run and hug her and to stay across the room. Holli has been back to work as an Art teacher for 1st and 2nd graders. Kids that age are germ carriers and teachers catch every cold and infections the kids get. Holli spoke about the dreaded Bone Marrow Biopsies where she makes them sedate her since she finds it so painful. Holli was so open and so lovable and eager to share her medical experiences with Joe and me which we are grateful. We only got to talk for about 15 minutes before she was called back for her meeting with Dr. Romaguera. We intended to stay there till she came out but she and her husband were there for a very long time. Our instinct told us the Holli was not getting good news so we left the clinic at 3:15PM. Later via e-mails Holli told us that she was devastated with the bad news that she was no longer in remission. Romaguera had mentioned the stem cell transplant but it is something that Holli is trying to avoid. First they must determine what type of cancer Holli now has so a game plan can be determined. Pray for Holli to give her strength of spirit and body for her next battle.
Since we did not have lunch, we stopped at La Madeline's for Linner, a combination of lunch and dinner. Joe and I both had the French Dip sandwich on perfectly baked Sourdough Bread. Joe took my recommendation to try it and he loved it. He also had a slice of Cheesecake which he says is so good at the restaurant. I had a cup of the Tomato Bisque soup again along with my sandwich but no dessert for me.
We got back to the studio apartment about 4:45PM and we both took a nap till 7PM. We stayed in and watch TV and Joe groaned as I enjoyed watching Grey's Anatomy and Private Practice. I got him to stop groaning by massaging his legs and feet with some creamy Shea Butter the whole time. He loved that so he tolerated me watching my shows. I had offered to go to the Community Room downstairs to watch TV but he would not hear of it. Now he is sound asleep with Max next to him. Max senses that Joe is sick so he stays by him more than me these days. It is sweet to see them together, real pals.
God is walking with us and His Spirit guides us! Amazing Grace how sweet it is!
Ciao!
We dropped Max off at the studio apartment since we were heading to MDACC to meet with one of our Mantle Cell ACOR support list comrades who had an appointment at 2PM with Dr. Romaguera to go over her test results from last week. As we were about to leave, we got a call from the lovely Whitney Wilkinson, future pastor of a blessed Presbyterian Church to be determined. Whitney is currently living with her family in Victoria, TX which is about a two hour drive from Houston. Her voice will brighten any one's day by hearing it. She had invited Joe and me for Thanksgiving with her family in Victoria. Isn't that awesome! We would have accepted, without a doubt, but Joe is being re-admitted to MDACC on the Wednesday before Thanksgiving for Part B of the HyperCVD-R and will be in the hospital till Monday, 11/29. Joe and I considered being in the hospital over Thanksgiving is a good thing since we are so thankful for the medical advances that give Joe a chance at living longer. We are so thankful for the amazing medical staff at MDACC with their loving but professional attention to the physical aspects of chemo but also the emotional aspects for the patient and the caregiver. God is always present in the halls of MDACC. You can feel Him.
Off we went to MDACC to see if we could find Holli Baker, fellow Mantle Cell patient, at the clinic. I was looking for a lady with a pink ribbon on her purse. I had asked several ladies if they were Holli Baker but a gentleman sitting nearby stated the Holli had just stepped into Fast Track to get blood drawn for the labs. The long pony-tailed weathered man was Holli's husband! We walked to meet with one of Joe's favorite blood drawer and when we walked back, there was Holli. She knew that I was Bonnie and Joe was the tall guy next to me. We warmly hugged each other and fell into easy conversation about her journey with Mantle Cell. She had eight long rounds of HyperCVAD and had some rough experiences but she made it through it. She had been in remission for 1.5 years. Holli was very nervous as anyone would be to find out the results of her previous tests to see if she was still in remission. She talked about the foods that she had to stay away from and how Romaguera made her stay away from her grandchildren, teachers she worked with, and had to wear a mask all the time. She told us how she creatively saw her grandchildren through the car windows and spoke with them via cell phones. After awhile the kids knew that they could not run and hug her and to stay across the room. Holli has been back to work as an Art teacher for 1st and 2nd graders. Kids that age are germ carriers and teachers catch every cold and infections the kids get. Holli spoke about the dreaded Bone Marrow Biopsies where she makes them sedate her since she finds it so painful. Holli was so open and so lovable and eager to share her medical experiences with Joe and me which we are grateful. We only got to talk for about 15 minutes before she was called back for her meeting with Dr. Romaguera. We intended to stay there till she came out but she and her husband were there for a very long time. Our instinct told us the Holli was not getting good news so we left the clinic at 3:15PM. Later via e-mails Holli told us that she was devastated with the bad news that she was no longer in remission. Romaguera had mentioned the stem cell transplant but it is something that Holli is trying to avoid. First they must determine what type of cancer Holli now has so a game plan can be determined. Pray for Holli to give her strength of spirit and body for her next battle.
Since we did not have lunch, we stopped at La Madeline's for Linner, a combination of lunch and dinner. Joe and I both had the French Dip sandwich on perfectly baked Sourdough Bread. Joe took my recommendation to try it and he loved it. He also had a slice of Cheesecake which he says is so good at the restaurant. I had a cup of the Tomato Bisque soup again along with my sandwich but no dessert for me.
We got back to the studio apartment about 4:45PM and we both took a nap till 7PM. We stayed in and watch TV and Joe groaned as I enjoyed watching Grey's Anatomy and Private Practice. I got him to stop groaning by massaging his legs and feet with some creamy Shea Butter the whole time. He loved that so he tolerated me watching my shows. I had offered to go to the Community Room downstairs to watch TV but he would not hear of it. Now he is sound asleep with Max next to him. Max senses that Joe is sick so he stays by him more than me these days. It is sweet to see them together, real pals.
God is walking with us and His Spirit guides us! Amazing Grace how sweet it is!
Ciao!
Thursday, November 18, 2010
PROGRESS has made us hopeful!
Although Joe was not on the MDACC appointment calendar today but we followed Dr. Romaguera's instruction to come in for Fast Track on Wednesday and Friday. We got to the clinic about 10AM and the Lymphoma staff squeezed Joe in since somehow his appointment postings did not make it into the system. We spoke with several people in the waiting room who were being treated for multiple mylenoma and both were in clinical trials since their stem cell transplant did not work. One lived in Houston area and the couple lived in Texas City. When one talks to other people in the waiting area, you get thankful for your condition. Everyone is eager to talk about their journey and share their experiences. It is not a sad place, as one would think, but a very hopeful place where one believes in miracles or a being a survivor.
Today we got to see Dr. Romaguera who was happy about Joe's CBC but still wanted to see some of the other results such as the important neutrophils which would not be available for several more hours. Amazing results today were shown on Joe's White Blood Count which was 9.9. It was in the NORMAL range between 4.0-11.0 I am still very cautiously optimistic since if the WBC go wild again then that is not good which is a good chance of that happening. Why else would there be chemo for 6 months? Another great trend was that Joe's platelets increased from 11 to 27 since Monday! Wow! Romaguera did there is no way to know exactly what happened since his last transfusion could have been a very healthy blood donor. But hey! We need to grab at some HOPE that was shown today. Joe and I were very happy that Joe did not need a transfusion. It means we would not have to spend all day at MDACC. Romaguera wants Joe to have the next round of chemo sooner rather than 11/29 when it was scheduled for. It would mean Joe would be admitted next Wednesday and spend four to five days in the hospital which includes Thanksgiving Day. Joe and I are all for that since sitting around the apartment on Thanksgiving Day sounds depressing. We rather have Joe's chemo doing its work. Joe wants to go back home to Atlanta ASAP and doing the chemo next week would make it sooner. We will do our best to remain cautiously optimistic but there are so many variables.
We were personally invited by Pastor Alice Nord, who is co-pastor which her husband, Bernie at St Philp's Presbyterian Church, to come to Wednesday night's dinner and lecture. She was so personable on the phone that we decided to attend. Alice greeted at the door and took us under her wing by introducing everyone to us. The meal was Sheppard's Pie, a salad and a cookie. The lecture was about the Scottish heritage of the church. It was more interesting than what it sounds. Meeting new people is what Joe and I enjoy so it was a lovely evening.
Joe had a craving for Key Lime Pie and wanted me to have a glass of wine so we headed over to Morton's Steak House nearby. The size of the slice of pie was huge with a mound of whip cream. Joe enjoyed every bite. I had a glass of Pinot Grigio and an appetizer of slice of fillet Mignon on small buns with creamy mustard which was quite delicious.
Back in the apartment Joe spoke with his younger brother, Drew. It is so nice to see Joe have a solid conversations with his brother. They have become closer because of Joe's illness so that is a nice blessing under the circumstances.
Tomorrow is a late sleep in day and to take it slow. I have no idea what we will do until Joe asks me, " Bonnie, what are we doing today?" I will think of something where there are no crowds and some fresh air. The weather in Houston has been perfect.
Good Night, Sweet Dreams!
Today we got to see Dr. Romaguera who was happy about Joe's CBC but still wanted to see some of the other results such as the important neutrophils which would not be available for several more hours. Amazing results today were shown on Joe's White Blood Count which was 9.9. It was in the NORMAL range between 4.0-11.0 I am still very cautiously optimistic since if the WBC go wild again then that is not good which is a good chance of that happening. Why else would there be chemo for 6 months? Another great trend was that Joe's platelets increased from 11 to 27 since Monday! Wow! Romaguera did there is no way to know exactly what happened since his last transfusion could have been a very healthy blood donor. But hey! We need to grab at some HOPE that was shown today. Joe and I were very happy that Joe did not need a transfusion. It means we would not have to spend all day at MDACC. Romaguera wants Joe to have the next round of chemo sooner rather than 11/29 when it was scheduled for. It would mean Joe would be admitted next Wednesday and spend four to five days in the hospital which includes Thanksgiving Day. Joe and I are all for that since sitting around the apartment on Thanksgiving Day sounds depressing. We rather have Joe's chemo doing its work. Joe wants to go back home to Atlanta ASAP and doing the chemo next week would make it sooner. We will do our best to remain cautiously optimistic but there are so many variables.
We were personally invited by Pastor Alice Nord, who is co-pastor which her husband, Bernie at St Philp's Presbyterian Church, to come to Wednesday night's dinner and lecture. She was so personable on the phone that we decided to attend. Alice greeted at the door and took us under her wing by introducing everyone to us. The meal was Sheppard's Pie, a salad and a cookie. The lecture was about the Scottish heritage of the church. It was more interesting than what it sounds. Meeting new people is what Joe and I enjoy so it was a lovely evening.
Joe had a craving for Key Lime Pie and wanted me to have a glass of wine so we headed over to Morton's Steak House nearby. The size of the slice of pie was huge with a mound of whip cream. Joe enjoyed every bite. I had a glass of Pinot Grigio and an appetizer of slice of fillet Mignon on small buns with creamy mustard which was quite delicious.
Back in the apartment Joe spoke with his younger brother, Drew. It is so nice to see Joe have a solid conversations with his brother. They have become closer because of Joe's illness so that is a nice blessing under the circumstances.
Tomorrow is a late sleep in day and to take it slow. I have no idea what we will do until Joe asks me, " Bonnie, what are we doing today?" I will think of something where there are no crowds and some fresh air. The weather in Houston has been perfect.
Good Night, Sweet Dreams!
Wednesday, November 17, 2010
Kemah Broadwalk
Joe and I decided to drive to Kemah Broadwalk since it was such a beautiful day. We took I45 South to NASA 1 where the road passes right by NASA Houston Headquarters. A few years ago Joe and I visited the site and enjoyed the educational tour. The road to NASA is so much better now with the massive road improvements making it also an easy drive to Kemah and to visit NASA.
Kemah Broadwalk is located on Galveston Bay. Landry Seafood created the amusement area which is perfect for families with all the carnival rides plus a nice looking wooden roller coaster. It also allows Landry to show off all their variations of restaurants. There is really a boardwalk with a great view of the bay and bridges as well as some beach homes. It was neat to watch the sailboats pass by as we had lunch on the boardwalk. My favorite scene was an incoming fishing boat where one of the fisherman was cleaning the fish. Massive amounts of sea birds were fetching their lunch. There were about 30 large pelicans following the boat as well as seagulls and the long legged white egrets. The working fisherman kept his focus among all the flying and darting birds.
Lunch was at Landry's Seafood Restaurant which is their anchor of their chain. It was not too busy so we got a great table where we had a panoramic view of the bay with a bright blue sky framing the scene. Joe absolutely loved his Oysters Rockefeller which he shared one of them with me, Yes, they were superb and fresh! He also enjoyed his Shrimp Scampi with pasta. I had a small bowl of Lobster Bisque and followed that with Fish and Chips. The fish was fresh, lightly breaded and a great tasting lunch. It came with fries which I did not eat but it also came with some habit tasting thinly sliced fried onion rings. I wish that I had not gotten so full on the fish since the onion rings were addicting good.
We walked only a little bit around the boardwalk since Joe was not up to much more. There were numerous Muslims around with their families. I figured it must had been a group outing. It turned out today is a Islam holiday honoring Abraham of the Old Testament.
It took only about 30 minutes to drive back to the studio apartment so Joe and I could take a short nap. I enjoyed watching Glee and the Good Wife while Joe groan through both of them. He went along with my watching those shows since he was already sick and tired of hearing about Prince William and Kate's engagement. The news shows over do it big time and it will only get worse as the Royal Wedding approaches. I skipped dinner since I was still full from lunch but Joe took the car and had three tacos at Taco Bell without the lettuce and tomatoes which he can not have.
As I watched the TV shows, I worked on creating some new excel spreadsheets to follow Joe's blood counts with the help of Larry in central Virginia from the Mantle Cell support group on line. Larry has been a blessing to Joe and me with his advice and sincere interest in helping Joe conquer this beast since he has traveled this road.
Today we received a bunch of cards. Our two granddaughters created theirs for Joe which we treasure. One of the most touching moments is reading cards from people that we do not know but who are following this blog. It is amazing how our lives get intertwined and creates such great human bonds. Thank you all for touching our hearts and minds. Joe is very moved by it all.
Tomorrow is another check in day at MDACC.
Peace be with you!
Kemah Broadwalk is located on Galveston Bay. Landry Seafood created the amusement area which is perfect for families with all the carnival rides plus a nice looking wooden roller coaster. It also allows Landry to show off all their variations of restaurants. There is really a boardwalk with a great view of the bay and bridges as well as some beach homes. It was neat to watch the sailboats pass by as we had lunch on the boardwalk. My favorite scene was an incoming fishing boat where one of the fisherman was cleaning the fish. Massive amounts of sea birds were fetching their lunch. There were about 30 large pelicans following the boat as well as seagulls and the long legged white egrets. The working fisherman kept his focus among all the flying and darting birds.
Lunch was at Landry's Seafood Restaurant which is their anchor of their chain. It was not too busy so we got a great table where we had a panoramic view of the bay with a bright blue sky framing the scene. Joe absolutely loved his Oysters Rockefeller which he shared one of them with me, Yes, they were superb and fresh! He also enjoyed his Shrimp Scampi with pasta. I had a small bowl of Lobster Bisque and followed that with Fish and Chips. The fish was fresh, lightly breaded and a great tasting lunch. It came with fries which I did not eat but it also came with some habit tasting thinly sliced fried onion rings. I wish that I had not gotten so full on the fish since the onion rings were addicting good.
We walked only a little bit around the boardwalk since Joe was not up to much more. There were numerous Muslims around with their families. I figured it must had been a group outing. It turned out today is a Islam holiday honoring Abraham of the Old Testament.
It took only about 30 minutes to drive back to the studio apartment so Joe and I could take a short nap. I enjoyed watching Glee and the Good Wife while Joe groan through both of them. He went along with my watching those shows since he was already sick and tired of hearing about Prince William and Kate's engagement. The news shows over do it big time and it will only get worse as the Royal Wedding approaches. I skipped dinner since I was still full from lunch but Joe took the car and had three tacos at Taco Bell without the lettuce and tomatoes which he can not have.
As I watched the TV shows, I worked on creating some new excel spreadsheets to follow Joe's blood counts with the help of Larry in central Virginia from the Mantle Cell support group on line. Larry has been a blessing to Joe and me with his advice and sincere interest in helping Joe conquer this beast since he has traveled this road.
Today we received a bunch of cards. Our two granddaughters created theirs for Joe which we treasure. One of the most touching moments is reading cards from people that we do not know but who are following this blog. It is amazing how our lives get intertwined and creates such great human bonds. Thank you all for touching our hearts and minds. Joe is very moved by it all.
Tomorrow is another check in day at MDACC.
Peace be with you!
Tuesday, November 16, 2010
Long Monday at MDACC
The day started with the flushing of Joe's PICC lines and his daily shot of Neuprogin. Neuprogin is to help his white blood cells to recover from the chemo and hopefully healthy ones will develop and not the Mantle Cell Lymphoma. Joe's hair is a bit thinner. He has a dry irritating cough. He also has a rash around his ankles which is caused by his very low platelets. If you were to ask Joe how he felt, he would tell you he fells great except for being tired.
We both took Max out for his morning business which he is regular at doing. Afterwards we headed over to Pandera as usual for our morning breakfast. Joe always has his grande coffee and a cinnamon roll but today he added OJ. Joe wanted to get our car wash again so he could vacuum the interior of the car which I was reluctant to let him do since he has had several episodes of ringing in his ears with dizziness for about 10-15 seconds but he insisted. There was a $4.00 drive through car wash on the way to the hospital that included do it yourself vacuum. Surprisingly the drive through car wash did a decent job cleaning up the car. Joe had no dizziness issues vacuuming the interior.He was happy to accomplish something.
Lunch was at La Madeleine's on Kirby where we both had a cup of delicious tomato basil soup. Joe enjoyed a quiche lorraine and I had a half of roast beef sandwich. MDACC is only about 10 minutes away from the restaurant making it a convenient and delicious stop.
Joe's first appointment was at 1PM at the Lymphoma Clinic for the Fast Track Lab work and Vital signs. They directed us to go to the Neurology Department right away rather than wait for the appointment time of 2PM. Dr Groves, the neurologist, was out today since his wife had their first child, a baby girl. Good excuse but there were plenty of other doctors to assist Joe. They did a thorough neurological exam and found that he was fine in that area. They want him off the Dilantin for his night time seizures since it interferes with the chemicals used in chemotherapy. So now Joe will be taking two Kepra pills in the morning and two again at night. To wean Joe off the Dilantin, they have directed him to decrease it to 3 pills for one week, then 2 pills the following week, then 1 for a week the zero. We pray that the new medicine keeps his seizures away since they could cause Joe internal bleeding and all kinds of serious issues. Another thing is now added to my worry list.
We headed back up one floor to see Dr. Romaguera who is Joe's principal Mantle Cell Lymphoma physician. We have great faith in his ability to get Joe into remission with all the means available. It is a blessing that there are more therapies now than ever before especially the miracle drug, Rituzimab. There are new medical advances everyday and pray that someone day this disease can be managed on a long term basis. Dr. Romaguera stated that he is pleased with Joe's tolerance of the HyperCVD-R and his blood results. Joe's WBC went from .6 on Friday to 2.8 today (normal low is 4). His platelets went from 5 on Friday to 11 today. His hemogloblin dropped from 9.4 to 8.7. His hematocrit dropped from 30.2 to 27.9. Romaguera ordered a pint of red blood and 6 more units of platelets transfusions for the day but first Joe had to get his blood typed again in the Diagnostic Lab on the 2nd floor. When Joe came out of the lab and started walking down the hall, we had to stop and go back to the nurse since blood was streaming down his arm. They cleaned him up and told him to keep pressure on it for 15 minutes which did the trick.
We reported back up to the Lymphoma clinic to wait for the transfusion orders. There was a hold up waiting for the lab's typing of the blood which finally arrived about 5PM. The nurse came out at 5:30 PM and told us the transfusion appointment was not until 8PM so we decided to go out to dinner at Pappasitos on Kirby and Richmond. What a great meal we had with Joe having chicken fajitas and I had the filet migon fajitas. Boy they were fantastic. I also loved their chunky avocado sauce.
The 8PM transfusion appointment was exactly on time on the second floor of MDACC. They started Joe off with the platelets which took about 1.5 hours total then they started the red blood which takes much longer. We left MDACC at midnight which made it truly a long day. Joe wanted to purchase two more half gallons of OJ and I remembered that there was a Kroger on South Main Street open 24 hours. It was 12:30 by the time we got to the studio apartment. How Max lasted nearly 14 hours without having an accident is amazing. I took him out for a walk since I wanted Joe to rest since the long day takes a real toll on him.
watch over him.
Good grief! It is almost 2PM CST so it is time to say Good Night to all.
Ciao!
Bonnie
We both took Max out for his morning business which he is regular at doing. Afterwards we headed over to Pandera as usual for our morning breakfast. Joe always has his grande coffee and a cinnamon roll but today he added OJ. Joe wanted to get our car wash again so he could vacuum the interior of the car which I was reluctant to let him do since he has had several episodes of ringing in his ears with dizziness for about 10-15 seconds but he insisted. There was a $4.00 drive through car wash on the way to the hospital that included do it yourself vacuum. Surprisingly the drive through car wash did a decent job cleaning up the car. Joe had no dizziness issues vacuuming the interior.He was happy to accomplish something.
Lunch was at La Madeleine's on Kirby where we both had a cup of delicious tomato basil soup. Joe enjoyed a quiche lorraine and I had a half of roast beef sandwich. MDACC is only about 10 minutes away from the restaurant making it a convenient and delicious stop.
Joe's first appointment was at 1PM at the Lymphoma Clinic for the Fast Track Lab work and Vital signs. They directed us to go to the Neurology Department right away rather than wait for the appointment time of 2PM. Dr Groves, the neurologist, was out today since his wife had their first child, a baby girl. Good excuse but there were plenty of other doctors to assist Joe. They did a thorough neurological exam and found that he was fine in that area. They want him off the Dilantin for his night time seizures since it interferes with the chemicals used in chemotherapy. So now Joe will be taking two Kepra pills in the morning and two again at night. To wean Joe off the Dilantin, they have directed him to decrease it to 3 pills for one week, then 2 pills the following week, then 1 for a week the zero. We pray that the new medicine keeps his seizures away since they could cause Joe internal bleeding and all kinds of serious issues. Another thing is now added to my worry list.
We headed back up one floor to see Dr. Romaguera who is Joe's principal Mantle Cell Lymphoma physician. We have great faith in his ability to get Joe into remission with all the means available. It is a blessing that there are more therapies now than ever before especially the miracle drug, Rituzimab. There are new medical advances everyday and pray that someone day this disease can be managed on a long term basis. Dr. Romaguera stated that he is pleased with Joe's tolerance of the HyperCVD-R and his blood results. Joe's WBC went from .6 on Friday to 2.8 today (normal low is 4). His platelets went from 5 on Friday to 11 today. His hemogloblin dropped from 9.4 to 8.7. His hematocrit dropped from 30.2 to 27.9. Romaguera ordered a pint of red blood and 6 more units of platelets transfusions for the day but first Joe had to get his blood typed again in the Diagnostic Lab on the 2nd floor. When Joe came out of the lab and started walking down the hall, we had to stop and go back to the nurse since blood was streaming down his arm. They cleaned him up and told him to keep pressure on it for 15 minutes which did the trick.
We reported back up to the Lymphoma clinic to wait for the transfusion orders. There was a hold up waiting for the lab's typing of the blood which finally arrived about 5PM. The nurse came out at 5:30 PM and told us the transfusion appointment was not until 8PM so we decided to go out to dinner at Pappasitos on Kirby and Richmond. What a great meal we had with Joe having chicken fajitas and I had the filet migon fajitas. Boy they were fantastic. I also loved their chunky avocado sauce.
The 8PM transfusion appointment was exactly on time on the second floor of MDACC. They started Joe off with the platelets which took about 1.5 hours total then they started the red blood which takes much longer. We left MDACC at midnight which made it truly a long day. Joe wanted to purchase two more half gallons of OJ and I remembered that there was a Kroger on South Main Street open 24 hours. It was 12:30 by the time we got to the studio apartment. How Max lasted nearly 14 hours without having an accident is amazing. I took him out for a walk since I wanted Joe to rest since the long day takes a real toll on him.
watch over him.
Good grief! It is almost 2PM CST so it is time to say Good Night to all.
Ciao!
Bonnie
Monday, November 15, 2010
R & R
Joe and I definitely kept a low profile this weekend. We got unbelievable amounts of sleep with sleeping late each day, eat lunch, then an afternoon nap, dinner, watch TV and back to bed. It was kind of good just to exist but then it makes me think too much also. I miss our home, our family, neighbors, friends and our church. I know that everyone is with us in spirit but sometimes you just want to be hugged and cuddled. I suppose that I am a bit melancholy from knowing that we will be away from all that we love for Thanksgiving. Thanksgiving is my favorite holiday since for the last 20 plus years we have rented a home in Hilton Head for the whole week. My boys and their families all come and stay under one roof. It is a true together time where we ride bikes, walk on the beach, play various board games, eat in and dine out, go to the movies, bowl, kayak and of course watch football. It is the "bring together" part that I will miss terribly and pray that Joe and I will find something special to do here in Houston on Thanksgiving Day. We are here to get Joe into remission so that there will be many more family holidays and new travels. The goal is not forgotten.
Tomorrow is a day at MDACC that ends with a consultation with the Mantle Cell Lymphoma expert Dr. Romaguera to discuss where Joe is, where he should be and what is next. We pray that Joe's blood and marrow is going in the right direction. There is no reason not believe that it is not but one always has doubts. The Lord has been carrying us through the daily battles and worries.
Joe and I have truly become closer than we ever been before. We have kept our vows that state "sickness and in health." I love the guy and he loves me. We stand by each other and know what is going in each of our minds. We are in sync. We will continue to walk this crooked trail and hope that the path will start to get straighter.
Hug a loved one!
Ciao.
Tomorrow is a day at MDACC that ends with a consultation with the Mantle Cell Lymphoma expert Dr. Romaguera to discuss where Joe is, where he should be and what is next. We pray that Joe's blood and marrow is going in the right direction. There is no reason not believe that it is not but one always has doubts. The Lord has been carrying us through the daily battles and worries.
Joe and I have truly become closer than we ever been before. We have kept our vows that state "sickness and in health." I love the guy and he loves me. We stand by each other and know what is going in each of our minds. We are in sync. We will continue to walk this crooked trail and hope that the path will start to get straighter.
Hug a loved one!
Ciao.
Saturday, November 13, 2010
More Platlets and the counts drop
Three days has passed since I wrote on the blog. Times flies when you are also not having fun. The walls of the studio are starting to close in and fells like it is smaller and smaller. The only way to make it feel bigger is to keep it neat and tidy which is not easy since it is small. Things have the ability to multiply on the limited counter and desk space. The backs of chairs seem to accumulate more clothes as well as unread and read newspapers on top of Max's kennel. Finding the motivation to tackle the chaos is lacking and there is always tomorrow.
Thursday was an off day from medical visits so we wanted to take advantage of it by taking a road trip to the Gulf of Mexico. The morning in Houston was gray and rainy with more rain in the forecast for the day so I wondered whether it was a good idea to do the drive. We left the hotel at 11AM with Max in the back seat. Max loves to travel and when we say, " Do you wanna go bye-bye?". He stands straight up and heads to the door. Max is a great traveling dog. Joe needed to have his Starbucks coffee and I thought that would be easy to do on the way to the Gulf especially since it seems there was a Starbucks on every corner but it turns out when you want one, you can not find one. I thought I knew where one was off of US59 but I never saw it. I drove around the area for 40 minutes before finding a Starbucks. There were no parking spots so I let Joe run in as I circled the block three times before he came out into the rain. I wondered whether we should just turn back and call it a day since it did not start well and also since the rain was coming down harder. I decided to still keep the plan.
At the dog park someone told us where to find the best place to have a dog run on the beach. They told us to head on 288 South and go till it stops. Most of the way was like an interstate highway before getting closer to the shore. There were no signs telling us how far it was to go so we kept going and going. There was no traffic and as we got closer to the coastline, the rain was thankfully dwindling. Lots of oak trees and pastures of cattle were by the road. Yes, there are really some very "long" horned cattle but also some Black Angus.
We finally made it to the town of Freeport which is the town near the coast about 2PM. We stopped to get gas which was a stop gate for people buying money orders who looked a bit scroungy looking. We keep on 288 until there was no more road but no beach either. The road ended at a refinery. My instinct took over and I turned left until I saw a sign that said Surfside Beach and Galveston where I turned right. Over the intracoastal waterway bridge we climbed and we saw the large surf of the Gulf of Mexico. There was a weathered Surfside Beach sign with some monstrous sand moving trucks moving in and out of the sand road. It seemed that was the place to go and so we did. Wow, it was beautiful with rows and rows of waves coming off the Gulf with clear blue skies and mild temperatures. Max did not know what to make of all the wide open space and the waves crashing onto the beach where we were parked. There was a sign that said there was a $10 parking fee to park on the beach but there was no one around so we just parked. Max ran around and around and followed me into the water to get my feet wet. The water was not too cold. Joe loved breathing in the salt air and knelt down to pet Max to take in the moment. It was a happy moment for all three of us. We stayed there about 30 minutes before we decided we were hungry for seafood. The beach does that to you. The one place to eat at Surfside
The Atlanta Falcons were playing the Baltimore Ravens on Thursday night on national TV at 7:30PM this we were prepared to snuggle in the studio to watch the game. It was not on TV. Shamefully it was on the NFL Network and not available to us. I called around and found the game was at Applebee's on Westheimer. I had no idea that Westheimer was so long and that it went all the way to New Mexico. Thirty minutes later we found Applebees which was jammed pack with Veterans for their free Veterans Day meal. The bar was full but a Vet gave up his seat for me. Joe bought him a drink as a thank you and the Vet bought me a drink. Joe and I had a lovely time with the five vets seated near us. They thought I was hysterical as I watched the Falcons beat the Ravens. I tend to get deeply involved with the emotional part of the game. It turned out to be an unexpected great time.
Saturday was a day of rest. We slept very late that we had to eat lunch instead. We watched some football and we both took a long nap but we were still able to watch Georgia get beat by the Auburn Farmers. LOL. Dinner was at Cafe Moustache which was French. The place had ambiance with the good piano player. Service was nice. I had a great meal but Joe did not like his. Oh well! Now we are back "home" watching the Gators get slaughtered by South Carolina Gamecocks who are coached by Steve Spurrier. I must say that Spurrier has made a winner out of the Gamecocks who were the whipping boys of the SEC forever.
Tomorrow we will attend the 11AM service of St Philips Presbyterian around the block then have lunch followed by a day of NFL football. I may sneak out and get my battered nails done.
Joe still has a great attitude although he is weaker and going bald rather slowly. His white soft fuzzy hair is kind if cute to me and he has just enough hair to look like he has some hair. The hair on the back of his head is pretty sparse but I think he can wait a week before having to shave it off.
So our powerful Prayer Army please continue to pray that Joe's blood counts recover so that he can lead a normal life. Pray that infections stay away. Pray that he stays safe from cuts and internal bleeding. The Lord has been so good to us. I hope He does not mind us asking for Joe's good health to come back.
Ciao!
Thursday was an off day from medical visits so we wanted to take advantage of it by taking a road trip to the Gulf of Mexico. The morning in Houston was gray and rainy with more rain in the forecast for the day so I wondered whether it was a good idea to do the drive. We left the hotel at 11AM with Max in the back seat. Max loves to travel and when we say, " Do you wanna go bye-bye?". He stands straight up and heads to the door. Max is a great traveling dog. Joe needed to have his Starbucks coffee and I thought that would be easy to do on the way to the Gulf especially since it seems there was a Starbucks on every corner but it turns out when you want one, you can not find one. I thought I knew where one was off of US59 but I never saw it. I drove around the area for 40 minutes before finding a Starbucks. There were no parking spots so I let Joe run in as I circled the block three times before he came out into the rain. I wondered whether we should just turn back and call it a day since it did not start well and also since the rain was coming down harder. I decided to still keep the plan.
At the dog park someone told us where to find the best place to have a dog run on the beach. They told us to head on 288 South and go till it stops. Most of the way was like an interstate highway before getting closer to the shore. There were no signs telling us how far it was to go so we kept going and going. There was no traffic and as we got closer to the coastline, the rain was thankfully dwindling. Lots of oak trees and pastures of cattle were by the road. Yes, there are really some very "long" horned cattle but also some Black Angus.
We finally made it to the town of Freeport which is the town near the coast about 2PM. We stopped to get gas which was a stop gate for people buying money orders who looked a bit scroungy looking. We keep on 288 until there was no more road but no beach either. The road ended at a refinery. My instinct took over and I turned left until I saw a sign that said Surfside Beach and Galveston where I turned right. Over the intracoastal waterway bridge we climbed and we saw the large surf of the Gulf of Mexico. There was a weathered Surfside Beach sign with some monstrous sand moving trucks moving in and out of the sand road. It seemed that was the place to go and so we did. Wow, it was beautiful with rows and rows of waves coming off the Gulf with clear blue skies and mild temperatures. Max did not know what to make of all the wide open space and the waves crashing onto the beach where we were parked. There was a sign that said there was a $10 parking fee to park on the beach but there was no one around so we just parked. Max ran around and around and followed me into the water to get my feet wet. The water was not too cold. Joe loved breathing in the salt air and knelt down to pet Max to take in the moment. It was a happy moment for all three of us. We stayed there about 30 minutes before we decided we were hungry for seafood. The beach does that to you. The one place to eat at Surfside
The Atlanta Falcons were playing the Baltimore Ravens on Thursday night on national TV at 7:30PM this we were prepared to snuggle in the studio to watch the game. It was not on TV. Shamefully it was on the NFL Network and not available to us. I called around and found the game was at Applebee's on Westheimer. I had no idea that Westheimer was so long and that it went all the way to New Mexico. Thirty minutes later we found Applebees which was jammed pack with Veterans for their free Veterans Day meal. The bar was full but a Vet gave up his seat for me. Joe bought him a drink as a thank you and the Vet bought me a drink. Joe and I had a lovely time with the five vets seated near us. They thought I was hysterical as I watched the Falcons beat the Ravens. I tend to get deeply involved with the emotional part of the game. It turned out to be an unexpected great time.
Saturday was a day of rest. We slept very late that we had to eat lunch instead. We watched some football and we both took a long nap but we were still able to watch Georgia get beat by the Auburn Farmers. LOL. Dinner was at Cafe Moustache which was French. The place had ambiance with the good piano player. Service was nice. I had a great meal but Joe did not like his. Oh well! Now we are back "home" watching the Gators get slaughtered by South Carolina Gamecocks who are coached by Steve Spurrier. I must say that Spurrier has made a winner out of the Gamecocks who were the whipping boys of the SEC forever.
Tomorrow we will attend the 11AM service of St Philips Presbyterian around the block then have lunch followed by a day of NFL football. I may sneak out and get my battered nails done.
Joe still has a great attitude although he is weaker and going bald rather slowly. His white soft fuzzy hair is kind if cute to me and he has just enough hair to look like he has some hair. The hair on the back of his head is pretty sparse but I think he can wait a week before having to shave it off.
So our powerful Prayer Army please continue to pray that Joe's blood counts recover so that he can lead a normal life. Pray that infections stay away. Pray that he stays safe from cuts and internal bleeding. The Lord has been so good to us. I hope He does not mind us asking for Joe's good health to come back.
Ciao!
Wednesday, November 10, 2010
Tuesday and Wednesday: Mixture
Tuesday was our medical day off which means that we did not have to go to any medical center. The day was devoted to REST! I still had a mild cold so you know what that does to your energy level. Yes, a second cold since we came to MDACC and both of them caused by the temperatures in the hospital rooms which I call frigid. I hate being cold. Even with my heating throw blanket I got cold on my face as well as my little pug nose. For those who are caregivers who will stay with their loved ones you need to be prepared to dress warmly. It would not be a bad idea to even have a night cap. Not the liquid kind, but the kind you put on your head.
It is weird when I skip a day writing the blog that I can not remember what happened the day before. On Tuesday we started the day at Panera Bread which both Joe and I enjoy. While we were there, there was a massive amount of water falling from the ceiling next to the window that it looked like a zen waterfall until the ceiling tiles got so soaked that they collapsed with some real loud commotion. The employees were looking for anything that could catch the water and moving furniture and customers out of the way.
Each Tuesday is our weekly anniversary day at the studio suite so that means our room gets cleaned up. Since we had to be out of the room, we decided to go to Wendy's for lunch and take Max to the Dog Park. We get Max his own plain hamburger so he is not left out of having a special lunch. Joe enjoyed the hamburger and fries and real sweet tea! The day was just the perfect temperature for Joe along with a lovely soft breeze. It is fun to interact with the other dogs at the park. There was one dog who loved chasing a frisbee into the dog pool. Boy, he made some big splashes over and over again. When another dog got too close to his frisbee, he would take it to a big mud puddle and cover it with mud. What a sight to see and what a grand mess of fun! Max was way too cautious but he did take five poos which of course I cleaned up. The park wisely has plastic bags in dispensers so owners would have no excuse for not cleaning up after their dogs. Oh yes, there are always people who are not responsible but it is a large park so it is not too bad. I had purchased Max some orange tennis balls to chase after and hopefully jump into the dog pool. He never did jump in but he did get his legs wet up to his stomach so that was progress. He really wanted that ball back. We stayed at the park only for about 30 minutes since I did not want Joe to get worn out. Joe enjoyed watching Max and the various other breeds of dogs.
By the time we got back to the room it was all cleaned up so now it was time to take it easy which we did the rest of the day. Of course, we took a nap. I also did the laundry which there was a bunch. While I was folding the last dried batch, I started a conversation with Lee who is here with her husband from Toronto, Canada. They got here about 11/3 and will be here till the end of the month. Her husband as an advanced stage of colon cancer that has spread to his liver. The diagnosis was found out at the end of October. They have come to Houston to get the best cancer care they can get. She told that 20 years ago her 13 year old daughter had cancer and she had chemo for two whole years. She showed me a picture of that beautiful daughter who is now 33 years old. Lee has faith that they will win her husband's fight against his cancer. She is a very pretty trim lady and so friendly. I hope that we run into each other again in the coming weeks.
Last night Joe and I had dinner at Ninfa's on Navigation where Ninfa originated fajitas many years ago. The place was hard to find but we got to it. We knew that we found a winner since at 8:30PM on a Tuesday night there was a line outside to get it and the parking lot was full. Luckily most of the crowd was leaving so the dining room was not as filled as it could be, They also had a great outdoor patio. The place oozed with friendly atmosphere and also good Mexican food. Joe enjoyed two Chile Rellenos and I had a Chicken Chimichanga. Getting home was a bit of a challenge since I was not familiar with this side of town so we got a bit of a side tour of the downtown business district of Houston. Joe was patient as I used my navigational nose to get us "home" which I did by 10:30 PM. I took Max out as Joe took his handful of medicines. We watched David Letterman for awhile. We really wanted to watch Conan but the TBS station on our TV is just infomercials. UGH!
Today is Wednesday and this is the day of MDACC check in. Joe's hair is getting less and less and his monstrous spleen is getting smaller. Joe is sleeping great but has to wake up many times at night to pee thanks to the latrixPICC lines and give him his shot of Neupogin. Our first stop is the usual Panera Bread then we head off and start our day.
We had about an hour before the FAST TRACK at MDACC so we thought we go to COSTCO but it was too early. Since we had time to waste, Joe says to stop at a Car Wash where the staff was outside waving signs begging for business so I decided to stop there. Now we have another instance of Divine Intervention. The Owner/Cashier had one of those small white fluffy Bijohn Frischee who was friendly and so kissable as well as hugable which Joe and I enjoyed paying attention to. Joe started a conversation with the owner who has a sister, 43 year old Ellen, who is from Alpharetta, Georgia. She was flying in today to go to MDACC for treatment for Mantle Cell Lymphoma for the first time and will be seen by Dr. Romaguera. She has the same disease as Joe and will be seeing the same doctor as Joe. The owner asked if we would talk to his sister since she is so scared since she also as Diabetes. We gave him our phone numbers and email address to give to his sister. We warned him that each person reacts differently to their disease and that Ellen may not be ready to talk with anyone but she was welcome to contact us as a mentor and to ask questions. God sent us there. How else can one explain this? How can this all be by chance? Believe! Faith! Love! Compassion! Help thy neighbor!
We did not have to wait very long for Joe to get his vital signs and his blood drawn for Fast Track. About 30 minutes later the APN saw us and Joe's platelet level had dropped from 10 on Monday to only 6 today even after having 6 units of platelets on Monday. Joe and I were not at all surprised since our fellow comrades in the same fight told us what to be prepared for and they were correct. The APN ordered six more units of platelets to be done at the transfusion department on the second floor. It took a total of two hours from check in to check out for the entire process and we were headed out of the hospital by 3:15PM which was great. They gave Joe some Tylenol and benadryl before getting the platelets. The benadryl lowered his blood pressure and Joe took an hour and a half snooze on his back with a warm blanket on top of him as I sat, listened and watched. Joe felt good afterwards and said that he had dreamed of going to Starbucks to get a Caramel Frappucino. His dream wish was granted where he also enjoyed a double chocolate brownie. We stopped at Costco to see if they had some Khaki slacks but they were all too big for Joe. The only thing we bought there was a case of Caffeine Free Diet Coke for you know who. On the way down Richmond Avenue we stopped at T J Maxx where we were successful in finding some Khaki pants that fit him better with a size 34 waist. The ones Joe had were enormous on him and made him look sloppy and unkempt. I found a large long sweater and pants to keep me warm for the next extended visit a MDACC. I will be prepared for the next chemo on 11/29. From there we went at Joe's request to Sports Authority where Joe purchased some 5 pound hand weights, a pair of gray nylon shorts. He looks good in shorts and way more comfortable in them. I bought a paid of short thick socks since I wore the ones that I bought with me out.
We decided to stay in the studio tonight and watch the Country Music Awards. We had Barry's Pizza deliver a medium pie which all three of us enjoyed.
The weather forecast shows that it will rain this weekend so we are planning to drive down to the Gulf Coast tomorrow with Max and let him experience the ocean. We will have lunch some place down there. The drive is maybe an hour which will not be hard on Joe. If he starts to feel bad in any way, we will turn around and come back. Joe likes the idea so that is the plan tomorrow. We shall see.
Thank you for the positive e-mails, posts and cards. It means the world to us. I read the jokes to Joe and I love hearing him laugh. Our friend, Mike Morton, sends us some really funny ones as well as a bunch of others all over the world. Laughter is good. Love is wonderful. God is good.
Blessings to you all!
Bonnie
It is weird when I skip a day writing the blog that I can not remember what happened the day before. On Tuesday we started the day at Panera Bread which both Joe and I enjoy. While we were there, there was a massive amount of water falling from the ceiling next to the window that it looked like a zen waterfall until the ceiling tiles got so soaked that they collapsed with some real loud commotion. The employees were looking for anything that could catch the water and moving furniture and customers out of the way.
Each Tuesday is our weekly anniversary day at the studio suite so that means our room gets cleaned up. Since we had to be out of the room, we decided to go to Wendy's for lunch and take Max to the Dog Park. We get Max his own plain hamburger so he is not left out of having a special lunch. Joe enjoyed the hamburger and fries and real sweet tea! The day was just the perfect temperature for Joe along with a lovely soft breeze. It is fun to interact with the other dogs at the park. There was one dog who loved chasing a frisbee into the dog pool. Boy, he made some big splashes over and over again. When another dog got too close to his frisbee, he would take it to a big mud puddle and cover it with mud. What a sight to see and what a grand mess of fun! Max was way too cautious but he did take five poos which of course I cleaned up. The park wisely has plastic bags in dispensers so owners would have no excuse for not cleaning up after their dogs. Oh yes, there are always people who are not responsible but it is a large park so it is not too bad. I had purchased Max some orange tennis balls to chase after and hopefully jump into the dog pool. He never did jump in but he did get his legs wet up to his stomach so that was progress. He really wanted that ball back. We stayed at the park only for about 30 minutes since I did not want Joe to get worn out. Joe enjoyed watching Max and the various other breeds of dogs.
By the time we got back to the room it was all cleaned up so now it was time to take it easy which we did the rest of the day. Of course, we took a nap. I also did the laundry which there was a bunch. While I was folding the last dried batch, I started a conversation with Lee who is here with her husband from Toronto, Canada. They got here about 11/3 and will be here till the end of the month. Her husband as an advanced stage of colon cancer that has spread to his liver. The diagnosis was found out at the end of October. They have come to Houston to get the best cancer care they can get. She told that 20 years ago her 13 year old daughter had cancer and she had chemo for two whole years. She showed me a picture of that beautiful daughter who is now 33 years old. Lee has faith that they will win her husband's fight against his cancer. She is a very pretty trim lady and so friendly. I hope that we run into each other again in the coming weeks.
Last night Joe and I had dinner at Ninfa's on Navigation where Ninfa originated fajitas many years ago. The place was hard to find but we got to it. We knew that we found a winner since at 8:30PM on a Tuesday night there was a line outside to get it and the parking lot was full. Luckily most of the crowd was leaving so the dining room was not as filled as it could be, They also had a great outdoor patio. The place oozed with friendly atmosphere and also good Mexican food. Joe enjoyed two Chile Rellenos and I had a Chicken Chimichanga. Getting home was a bit of a challenge since I was not familiar with this side of town so we got a bit of a side tour of the downtown business district of Houston. Joe was patient as I used my navigational nose to get us "home" which I did by 10:30 PM. I took Max out as Joe took his handful of medicines. We watched David Letterman for awhile. We really wanted to watch Conan but the TBS station on our TV is just infomercials. UGH!
Today is Wednesday and this is the day of MDACC check in. Joe's hair is getting less and less and his monstrous spleen is getting smaller. Joe is sleeping great but has to wake up many times at night to pee thanks to the latrixPICC lines and give him his shot of Neupogin. Our first stop is the usual Panera Bread then we head off and start our day.
We had about an hour before the FAST TRACK at MDACC so we thought we go to COSTCO but it was too early. Since we had time to waste, Joe says to stop at a Car Wash where the staff was outside waving signs begging for business so I decided to stop there. Now we have another instance of Divine Intervention. The Owner/Cashier had one of those small white fluffy Bijohn Frischee who was friendly and so kissable as well as hugable which Joe and I enjoyed paying attention to. Joe started a conversation with the owner who has a sister, 43 year old Ellen, who is from Alpharetta, Georgia. She was flying in today to go to MDACC for treatment for Mantle Cell Lymphoma for the first time and will be seen by Dr. Romaguera. She has the same disease as Joe and will be seeing the same doctor as Joe. The owner asked if we would talk to his sister since she is so scared since she also as Diabetes. We gave him our phone numbers and email address to give to his sister. We warned him that each person reacts differently to their disease and that Ellen may not be ready to talk with anyone but she was welcome to contact us as a mentor and to ask questions. God sent us there. How else can one explain this? How can this all be by chance? Believe! Faith! Love! Compassion! Help thy neighbor!
We did not have to wait very long for Joe to get his vital signs and his blood drawn for Fast Track. About 30 minutes later the APN saw us and Joe's platelet level had dropped from 10 on Monday to only 6 today even after having 6 units of platelets on Monday. Joe and I were not at all surprised since our fellow comrades in the same fight told us what to be prepared for and they were correct. The APN ordered six more units of platelets to be done at the transfusion department on the second floor. It took a total of two hours from check in to check out for the entire process and we were headed out of the hospital by 3:15PM which was great. They gave Joe some Tylenol and benadryl before getting the platelets. The benadryl lowered his blood pressure and Joe took an hour and a half snooze on his back with a warm blanket on top of him as I sat, listened and watched. Joe felt good afterwards and said that he had dreamed of going to Starbucks to get a Caramel Frappucino. His dream wish was granted where he also enjoyed a double chocolate brownie. We stopped at Costco to see if they had some Khaki slacks but they were all too big for Joe. The only thing we bought there was a case of Caffeine Free Diet Coke for you know who. On the way down Richmond Avenue we stopped at T J Maxx where we were successful in finding some Khaki pants that fit him better with a size 34 waist. The ones Joe had were enormous on him and made him look sloppy and unkempt. I found a large long sweater and pants to keep me warm for the next extended visit a MDACC. I will be prepared for the next chemo on 11/29. From there we went at Joe's request to Sports Authority where Joe purchased some 5 pound hand weights, a pair of gray nylon shorts. He looks good in shorts and way more comfortable in them. I bought a paid of short thick socks since I wore the ones that I bought with me out.
We decided to stay in the studio tonight and watch the Country Music Awards. We had Barry's Pizza deliver a medium pie which all three of us enjoyed.
The weather forecast shows that it will rain this weekend so we are planning to drive down to the Gulf Coast tomorrow with Max and let him experience the ocean. We will have lunch some place down there. The drive is maybe an hour which will not be hard on Joe. If he starts to feel bad in any way, we will turn around and come back. Joe likes the idea so that is the plan tomorrow. We shall see.
Thank you for the positive e-mails, posts and cards. It means the world to us. I read the jokes to Joe and I love hearing him laugh. Our friend, Mike Morton, sends us some really funny ones as well as a bunch of others all over the world. Laughter is good. Love is wonderful. God is good.
Blessings to you all!
Bonnie
Monday, November 8, 2010
Monday 11/8: Full day at MDACC as outpatient
Joe and I both slept really good last night with Max waking me up at 5:30 AM needing to go do his business. I put a jacket on and sandals and took him while I was in my leopard nightwear.....Grrrrrr. Max got freaked out again when the garbage men came to pick up the large trash container. The large noise scares the daylights out of him so he went poo only partially. It did not take much to go back to sleep until about 9AM when Max started pacing like crazy meaning he had to go really bad. It was now daylight so I did not want to go out in my leopard nightwear but poor Max could not hold it in any more and took a few large pellets by the door. I still took him out but he is so keen on the noises that he lowers his head and tail and wants back into the building.
Since I had developed another little cold, I decided that I would stay up and go to CVS and buy more cough medicine. Since I was already out, I wanted to get some other needed stops done such as the post office, grocery store, and Panera Bread before we headed to MDACC for Joe's Fast Track Check-In at 11AM. It was another gorgeous fall day in Houston with comfortable temperatures and blue skies. We saw two small puffs of clouds in the distance.
Joe checked in to get his blood drawn for Fast Track and get his Vitals checked. The nurse sent us off to lunch for an hour to wait for the lab work to be completed. We saw the PRN about 2PM when it was determined that Joe would need a platelet transfusion since his platelets has dropped from 14 the day before to 10 now. Normal low is 140. Low platelets are dangerous since that is what makes the blood clot. It was also noted that Joe had a bloody nose which is not a good sign. Remember we had asked about a platelet transfusion before he left the hospital on Sunday since I was aware that he was going to need one. I would have thought that it would have been better to have given it to him on Sunday.
Our appointment for the out patient platelet transfusion was at 3:30pm so we had an hour to kill. The PRN who gave the transfusion orders recommended that we go down to the transfusion department right away since they may get us in sooner. Well, that did not happen. Joe did not get called in till about 4:15pm and all I wanted was a nap but it was too cold in the place to get comfortable. The transfusion went smoothly with no effects and we left the place at 6:45PM.
Joe wanted some Texas BBQ at Goode's on Kirby. There were a bunch of people on line which made me nervous since Joe is not suppose to be around a bunch of people. We ate outside where there was less people and listened to the country twang music as we ate our BBQ.
It was great to see that Joe took Max out for a walk which gave me a small break from all the duties. Now Joe is sitting on the couch with his head back, mouth open, eyes shut with his arm around Max. Precious sight to see. It is only 9:30 PM here but I bet we are in bed by 10PM since the day really wore us both out.
Tomorrow there are NO medical appointments so I may be able to sleep late and take it slow. The weekly maid comes in tomorrow so when she comes we will take Max to the Family Dog Park. He will like that and it will be good for Joe also.
Good night one and all, May your night be peaceful with pleasant dreams.
Ciao,
Bonnie
Since I had developed another little cold, I decided that I would stay up and go to CVS and buy more cough medicine. Since I was already out, I wanted to get some other needed stops done such as the post office, grocery store, and Panera Bread before we headed to MDACC for Joe's Fast Track Check-In at 11AM. It was another gorgeous fall day in Houston with comfortable temperatures and blue skies. We saw two small puffs of clouds in the distance.
Joe checked in to get his blood drawn for Fast Track and get his Vitals checked. The nurse sent us off to lunch for an hour to wait for the lab work to be completed. We saw the PRN about 2PM when it was determined that Joe would need a platelet transfusion since his platelets has dropped from 14 the day before to 10 now. Normal low is 140. Low platelets are dangerous since that is what makes the blood clot. It was also noted that Joe had a bloody nose which is not a good sign. Remember we had asked about a platelet transfusion before he left the hospital on Sunday since I was aware that he was going to need one. I would have thought that it would have been better to have given it to him on Sunday.
Our appointment for the out patient platelet transfusion was at 3:30pm so we had an hour to kill. The PRN who gave the transfusion orders recommended that we go down to the transfusion department right away since they may get us in sooner. Well, that did not happen. Joe did not get called in till about 4:15pm and all I wanted was a nap but it was too cold in the place to get comfortable. The transfusion went smoothly with no effects and we left the place at 6:45PM.
Joe wanted some Texas BBQ at Goode's on Kirby. There were a bunch of people on line which made me nervous since Joe is not suppose to be around a bunch of people. We ate outside where there was less people and listened to the country twang music as we ate our BBQ.
It was great to see that Joe took Max out for a walk which gave me a small break from all the duties. Now Joe is sitting on the couch with his head back, mouth open, eyes shut with his arm around Max. Precious sight to see. It is only 9:30 PM here but I bet we are in bed by 10PM since the day really wore us both out.
Tomorrow there are NO medical appointments so I may be able to sleep late and take it slow. The weekly maid comes in tomorrow so when she comes we will take Max to the Family Dog Park. He will like that and it will be good for Joe also.
Good night one and all, May your night be peaceful with pleasant dreams.
Ciao,
Bonnie
Sunday, November 7, 2010
Sunday: Checked out!
Joe received two pints of blood on Saturday but it did not give him a boost of energy that he normally gets. Part B Chemo with the Rituzimab raged inside his body trying to kill those lymphoma cells and the toxins they give off as the die. Joe is just exhausted and sleeps more than he has ever slept before. The pooper drug mixture to help his body to expel the toxins is working but he hates the running to the potty and the mess it makes. Joe makes me throw away his underwear that had gotten stain. He just does not want to see it and wants it out of his sight so it is out of his mind.
It was about 8;30 PM when I headed to the "suite" to walk Max and give him some TLC. As soon as he does his business, he rushes back to the building as he can not wait to get back into the safety of the studio. On the way back to the hospital, I stopped at Randall's Supermarket and picked up a sandwich, chips, pretzels, cokes, OJ. Joe just loves the no pulp Tropicanna OJ in the 1/2 gallon container. My objective was to get back to the Joe by 10:30PM CST to watch Saturday Night Live which turned out to be a repeat of the Sue Sylvester hosting which was a good one. Since we had slept so much the day before, we stayed up and watched an old Richard Pryor concert. Joe loved Pryor and Joe laughed just as hard as he did the first time he saw it umpteenth years ago.
The clocks got set back in hour last night so even though we hit the pillow at 2AM, it was "Groundhog Night" where it was 1AM all over again. Joe had requested that one of the nurse's aide turn down the temperature in the room a few degrees as I slept. I semi woke up freezing cold, throat parched and scratchy and not happy tropper. The thermostat was cut down to the 50's!!!!!! I took a buck and 4 four quarters down the hall to the caregiver's room to the vending machine where another spouse was in a deep sleep snoring away with the TV blaring. The dang vending machine registered the dollar but when I put the coins in........nothing!! I hit the coin return button nothing....hit the button for the Coke.....nothing....put in another quarter.....nothing! Shook the machine....nothing... I went back to the room for another dollar bill and could not locate one but I dug up four quarters to ask the nurses to exchange it for a dollar bill. The third nurse had it. Head back to the vending machine where $1.00 was registered and put the dollar bill into the slot.....nothing!!!! I was now really pissed. One of the male nurses came out to help. He put in another quarter ....nothing. I mumbled disgracefully back to the room with the service phone number off the vending machine. Unfortunately, there was a real person at the end of the phone line as I stated my experience with the 9th floor Coke vending machine. Hey, what did I expect, someone to deliver a raging half asleep cold middle aged white lady, a coke. LOL. Poor Joe, stating very little and that if I was cold, to put up the temp and that is when I saw how low it was set. Good grief, I would get sick again! I grabbed my wallet as I went down to the first floor where the 24/7 Cafe was. Thank goodness no one else was there except the poor cashier who was sitting in the corner sulking of having to rework the hour that was lost to Daylight Savings Time. I told her that anyone who worked the night shift deserved triple time pay. I had my crazy striped pajamas on with socks on and my half asleep look, my hair disarrayed. I am sure she thought I was NUTS! I was at the particular moment but I got my Coke! Yeah! Yes, it was good as I gulped it down to relieve the parchness of my throat, I went back to sleep and woke up at 9AM! Good job!
I left the hospital at 9:30 to go back to the studio to tend to Max and I wanted to attend church service at St Philips Presbyterian. As I turned into the Homestead Studio's parking lot, the familiar ring tone of my cell alerted me Joe was calling. "Great News!," he states. " Dr Hagermeister says I could go "home" and please come back and get me." So after a quick walk with Max, I headed back over to MDACC to be with Joe. He wanted OUT right then and there. I warned him that it could take a couple of hours for the release papers to be completed. He had everything stacked and ready to go. He asked me to remove his IV lines and I said no way could I do that and that he would have to call the nurse to do that which I knew was not going to happen. I am sure there were lots of previous patients that as soon as they were unhooked, out they went before they were formally released which his assigned shift nurse confirmed to me later. Joe sat in the chair as I got into the comfortable hospital bed and fell fast asleep. Finally the supplies had arrived and now we took the trek down to the pharmacy to pick up $500 of medicine that cost us $32 out of pocket thanks to Joe's AT&T retiree medical benefits.
About 1:30PM we were on our way out of MDACCMadelines. Lunch consisted of their scrumptious Tomato Basil Soup, Potato Galette with Mushroom gravy, and a tuna salad on wheat for me. Joe enjoyed it.
Unpacking the car and putting stuff away, preparing lunch, taking care of Max, cleaning up the lunch dishes, took its toll on me so we both headed to the comfortable king size bed and took a solid couple hours nap. Joe continued to rest in the real bed after I had gotten up. I got a little stupid cough from the cold room temperature on Saturday night at MDACC. Aggravating! We are now watching 60 minutes with Joe on the couch with a throw blanket over his legs. He looks at home.
Our new medical schedule shows that the next round of chemo will not be until 11/29 which means we will be here until at least December. Joe asked Dr Hagermeister if he could go home to Atlanta in the meantime and the doc highly advised against it. Joe needs to stay near MDACC in case he needed medical care. Joe must be very careful about picking up infections which can be deadly if not aggressively taken care of which MDACC knows how to take care of. We will be here over Thanksgiving and miss our annual Thanksgiving week with the family at Sea Pines on Hilton Head Island. I will find something special to do Thanksgiving Day for sure. The Great One has been directing this adventure into the known so I know that it will all work out. We will find the rainbow even in the storm.
Now to figure out what to bring in for dinner!!!
Joe platelets are down to a low 14 but the doctor stated a platelet transfusion was not needed at this time. I will list his CBC results another time.
Ciao my family and friends!
Bonnie
It was about 8;30 PM when I headed to the "suite" to walk Max and give him some TLC. As soon as he does his business, he rushes back to the building as he can not wait to get back into the safety of the studio. On the way back to the hospital, I stopped at Randall's Supermarket and picked up a sandwich, chips, pretzels, cokes, OJ. Joe just loves the no pulp Tropicanna OJ in the 1/2 gallon container. My objective was to get back to the Joe by 10:30PM CST to watch Saturday Night Live which turned out to be a repeat of the Sue Sylvester hosting which was a good one. Since we had slept so much the day before, we stayed up and watched an old Richard Pryor concert. Joe loved Pryor and Joe laughed just as hard as he did the first time he saw it umpteenth years ago.
The clocks got set back in hour last night so even though we hit the pillow at 2AM, it was "Groundhog Night" where it was 1AM all over again. Joe had requested that one of the nurse's aide turn down the temperature in the room a few degrees as I slept. I semi woke up freezing cold, throat parched and scratchy and not happy tropper. The thermostat was cut down to the 50's!!!!!! I took a buck and 4 four quarters down the hall to the caregiver's room to the vending machine where another spouse was in a deep sleep snoring away with the TV blaring. The dang vending machine registered the dollar but when I put the coins in........nothing!! I hit the coin return button nothing....hit the button for the Coke.....nothing....put in another quarter.....nothing! Shook the machine....nothing... I went back to the room for another dollar bill and could not locate one but I dug up four quarters to ask the nurses to exchange it for a dollar bill. The third nurse had it. Head back to the vending machine where $1.00 was registered and put the dollar bill into the slot.....nothing!!!! I was now really pissed. One of the male nurses came out to help. He put in another quarter ....nothing. I mumbled disgracefully back to the room with the service phone number off the vending machine. Unfortunately, there was a real person at the end of the phone line as I stated my experience with the 9th floor Coke vending machine. Hey, what did I expect, someone to deliver a raging half asleep cold middle aged white lady, a coke. LOL. Poor Joe, stating very little and that if I was cold, to put up the temp and that is when I saw how low it was set. Good grief, I would get sick again! I grabbed my wallet as I went down to the first floor where the 24/7 Cafe was. Thank goodness no one else was there except the poor cashier who was sitting in the corner sulking of having to rework the hour that was lost to Daylight Savings Time. I told her that anyone who worked the night shift deserved triple time pay. I had my crazy striped pajamas on with socks on and my half asleep look, my hair disarrayed. I am sure she thought I was NUTS! I was at the particular moment but I got my Coke! Yeah! Yes, it was good as I gulped it down to relieve the parchness of my throat, I went back to sleep and woke up at 9AM! Good job!
I left the hospital at 9:30 to go back to the studio to tend to Max and I wanted to attend church service at St Philips Presbyterian. As I turned into the Homestead Studio's parking lot, the familiar ring tone of my cell alerted me Joe was calling. "Great News!," he states. " Dr Hagermeister says I could go "home" and please come back and get me." So after a quick walk with Max, I headed back over to MDACC to be with Joe. He wanted OUT right then and there. I warned him that it could take a couple of hours for the release papers to be completed. He had everything stacked and ready to go. He asked me to remove his IV lines and I said no way could I do that and that he would have to call the nurse to do that which I knew was not going to happen. I am sure there were lots of previous patients that as soon as they were unhooked, out they went before they were formally released which his assigned shift nurse confirmed to me later. Joe sat in the chair as I got into the comfortable hospital bed and fell fast asleep. Finally the supplies had arrived and now we took the trek down to the pharmacy to pick up $500 of medicine that cost us $32 out of pocket thanks to Joe's AT&T retiree medical benefits.
About 1:30PM we were on our way out of MDACCMadelines. Lunch consisted of their scrumptious Tomato Basil Soup, Potato Galette with Mushroom gravy, and a tuna salad on wheat for me. Joe enjoyed it.
Unpacking the car and putting stuff away, preparing lunch, taking care of Max, cleaning up the lunch dishes, took its toll on me so we both headed to the comfortable king size bed and took a solid couple hours nap. Joe continued to rest in the real bed after I had gotten up. I got a little stupid cough from the cold room temperature on Saturday night at MDACC. Aggravating! We are now watching 60 minutes with Joe on the couch with a throw blanket over his legs. He looks at home.
Our new medical schedule shows that the next round of chemo will not be until 11/29 which means we will be here until at least December. Joe asked Dr Hagermeister if he could go home to Atlanta in the meantime and the doc highly advised against it. Joe needs to stay near MDACC in case he needed medical care. Joe must be very careful about picking up infections which can be deadly if not aggressively taken care of which MDACC knows how to take care of. We will be here over Thanksgiving and miss our annual Thanksgiving week with the family at Sea Pines on Hilton Head Island. I will find something special to do Thanksgiving Day for sure. The Great One has been directing this adventure into the known so I know that it will all work out. We will find the rainbow even in the storm.
Now to figure out what to bring in for dinner!!!
Joe platelets are down to a low 14 but the doctor stated a platelet transfusion was not needed at this time. I will list his CBC results another time.
Ciao my family and friends!
Bonnie
Saturday, November 6, 2010
Saturday 11/6 Coping with Disappointment
Joe and I slept in different rooms last night with Joe in the hospital and I was with another male at the studio apartment with Mr. Max, our golden beloved dog. It was to get me a break and a good night's sleep since the previous one there was only 2.5 hours or less. With the chemo finished, it seemed like a good time to do it.
On the way home I stopped to have a glass of wine and some dinner at P F Chang's on Westheimer which was packed to the gills. I had dinner at the bar where I felt like a lonely single again but I needed a decent tasty meal and I got it. Max was laying in his kennel bed and was happy to see me. Hallelujah! He took a quick pee and finally a poo before aggressively pulling me to the door to be let back in. He knows exactly what doors and floors to go to. I went to bed about 11:30 PM and woke up about 8AM. After a hot shower and taking Max out I headed to Panera Bread around the corner to get my sesame bagel and Joe a Cobblestone. The sky is bright blue with a crisp cool air. The birds are very plentiful here and make massive groups. They also chirp like crazy in the mornings and after the sun just goes down. Saturday the Freeways are without traffic jams so getting to the hospital was a breeze. I stopped at the 24/7 Hospital Cafe and got Joe a cup of Starbuck's coffee to bring to his room.
Joe had all his belongings all stacked up and the Murphy bed pulled up with the belief he was going to be released today. I braced him that may not happen but he still held onto that belief. His last blood work from 5AM had his red counts low and with no doubt that he would get a transfusion. Dr. Hagermeister, his on call Lymphoma Doctor, told Joe that he was pleased with Joe's progress and that his spleen had decreased in size some more. The tumorlysis was still happening which was not a had thing but they still need to keep a close eye on it to assure that it would not shut his kidneys down. He told Joe that he would be staying in the hospital until at least Monday. From that point on Joe started to sleep again and could not stay awake. It was even difficult for him to get his eyes open for the eye drops that he gets four times a day. When he gets the red blood cells, he will be more alert and have energy.
Our pastor, Caleb Clark, from Eastminster Presbyterian, called me at 12:26 pm and that he has arrived at Hobby Airport in Houston. I advised him that we were still in the hospital and gave him instructions as to where were located at the massive Texas Medical Center Complex. Caleb arrived here about 1:20 Pm and spent two fantastic hours with us. He bought with him the hearts and spirit of our church. We felt the church with us. Joe perked up when Caleb arrived and talked about his medical journey in detail. Caleb and I got lunch from the downstairs cafeteria and ate in the quiet area of the hospital called The Park. There are tables with umbrellas and the sun shines through the roof glass. It makes it feel like one is outside and not in the hospital. Over lunch I described how God has directed us and ways that I feel could not just be coincidental. How so many little pieces of our lives have now come together and made us stronger in union of Joe winning against the Lymphoma. When we arrived back on the 9th floor hospital room, Joe had eaten a small part of his grilled shrimp with fries lunch. Joe lit back up when he saw Caleb. Joe said it felt like "home" to him and that he could feel the spirit of our church membership through Caleb. The most meaningful part of Caleb's visit was the celebration of the Lord's Supper together. Caleb read the perfect scripture where we are all one body and when one part of the body suffers, the whole body suffers just as Eastminster is the body and is hurting cause Joe is hurting. As Caleb was about to administer communion, in walks the nurses with the Blood to give Life to Joe. Now, how meaningful is that! Caleb was moved spiritually with that message from God as Joe and I were. Caleb gave us big hugs as he left to fly back to Atlanta. We told him to give the same hugs from us to our church community. We are making it through this treacherous journey through the power of their prayers and concern. Joe told Caleb again that he feels the love and prayers from everyone. He can not wait until he is able to join everyone with the celebration of a church service and a communion together. May God bless everyone. Thank you Eastminster Presbyterian for sending Caleb for the most meaningful touching communion and scripture message of our lives.
Now for a little college football for Joe and a nap for Miss Bonnie.
Here are Joe's most recent blood counts.
11/1 11/5 11/6
White Blood Cell Count (4-11) 56.1 7.4 7.7
Red Blood Count (4.5-6.0) 3.02 3.09 2.53
Hemoglobin (14-18) 8.9 9.0 7.5
Hematocrit (40-54) 29.4 28.9 23
Platelet Count (140-440) 76 26 21
Neutophil % (42-66) N/A 83 na
Lymphocyte % (24-44) N/A 16 na
Basophil % (0-1) n/a 1 na
Neutrophil % n/a na na
Lymphocyte Absolute Count(1-4.8) n/a 1.18 na
Basophil Absolute Count (0-.1) n/a .07 na
Creatinine Serum (.7-1.3) 1.02 1.17 1.15
Sodium Serum (135-147) 136 136 135
Potassium Serum (3.5-5.0) 4.4 4.5 5.1
Chloride Serum (98-108) 103 102 104
Carbon Dioxide (23-30) 32H 28 25
Blood Urea Nitrogen (8-20) 23H 44 44
Lactate Dehydrogenase (313-618) 935H 749 na
Uric Acid Serum (2.6-7.1) 6.6 6.7 4.6
Phosphorous Serum (2.5-4.5) 3.8 7.4 5.7
Calcium Serum (8.4-10.2) 8.4 7.6 na
Magnesium Serum (1.8-2.9) 2.2 2.6 na
Ionized Calcium (unknown) n/a 1.01 na
Peace of Christ be with you and Bless you forever and ever,
Bonnie
On the way home I stopped to have a glass of wine and some dinner at P F Chang's on Westheimer which was packed to the gills. I had dinner at the bar where I felt like a lonely single again but I needed a decent tasty meal and I got it. Max was laying in his kennel bed and was happy to see me. Hallelujah! He took a quick pee and finally a poo before aggressively pulling me to the door to be let back in. He knows exactly what doors and floors to go to. I went to bed about 11:30 PM and woke up about 8AM. After a hot shower and taking Max out I headed to Panera Bread around the corner to get my sesame bagel and Joe a Cobblestone. The sky is bright blue with a crisp cool air. The birds are very plentiful here and make massive groups. They also chirp like crazy in the mornings and after the sun just goes down. Saturday the Freeways are without traffic jams so getting to the hospital was a breeze. I stopped at the 24/7 Hospital Cafe and got Joe a cup of Starbuck's coffee to bring to his room.
Joe had all his belongings all stacked up and the Murphy bed pulled up with the belief he was going to be released today. I braced him that may not happen but he still held onto that belief. His last blood work from 5AM had his red counts low and with no doubt that he would get a transfusion. Dr. Hagermeister, his on call Lymphoma Doctor, told Joe that he was pleased with Joe's progress and that his spleen had decreased in size some more. The tumorlysis was still happening which was not a had thing but they still need to keep a close eye on it to assure that it would not shut his kidneys down. He told Joe that he would be staying in the hospital until at least Monday. From that point on Joe started to sleep again and could not stay awake. It was even difficult for him to get his eyes open for the eye drops that he gets four times a day. When he gets the red blood cells, he will be more alert and have energy.
Our pastor, Caleb Clark, from Eastminster Presbyterian, called me at 12:26 pm and that he has arrived at Hobby Airport in Houston. I advised him that we were still in the hospital and gave him instructions as to where were located at the massive Texas Medical Center Complex. Caleb arrived here about 1:20 Pm and spent two fantastic hours with us. He bought with him the hearts and spirit of our church. We felt the church with us. Joe perked up when Caleb arrived and talked about his medical journey in detail. Caleb and I got lunch from the downstairs cafeteria and ate in the quiet area of the hospital called The Park. There are tables with umbrellas and the sun shines through the roof glass. It makes it feel like one is outside and not in the hospital. Over lunch I described how God has directed us and ways that I feel could not just be coincidental. How so many little pieces of our lives have now come together and made us stronger in union of Joe winning against the Lymphoma. When we arrived back on the 9th floor hospital room, Joe had eaten a small part of his grilled shrimp with fries lunch. Joe lit back up when he saw Caleb. Joe said it felt like "home" to him and that he could feel the spirit of our church membership through Caleb. The most meaningful part of Caleb's visit was the celebration of the Lord's Supper together. Caleb read the perfect scripture where we are all one body and when one part of the body suffers, the whole body suffers just as Eastminster is the body and is hurting cause Joe is hurting. As Caleb was about to administer communion, in walks the nurses with the Blood to give Life to Joe. Now, how meaningful is that! Caleb was moved spiritually with that message from God as Joe and I were. Caleb gave us big hugs as he left to fly back to Atlanta. We told him to give the same hugs from us to our church community. We are making it through this treacherous journey through the power of their prayers and concern. Joe told Caleb again that he feels the love and prayers from everyone. He can not wait until he is able to join everyone with the celebration of a church service and a communion together. May God bless everyone. Thank you Eastminster Presbyterian for sending Caleb for the most meaningful touching communion and scripture message of our lives.
Now for a little college football for Joe and a nap for Miss Bonnie.
Here are Joe's most recent blood counts.
11/1 11/5 11/6
White Blood Cell Count (4-11) 56.1 7.4 7.7
Red Blood Count (4.5-6.0) 3.02 3.09 2.53
Hemoglobin (14-18) 8.9 9.0 7.5
Hematocrit (40-54) 29.4 28.9 23
Platelet Count (140-440) 76 26 21
Neutophil % (42-66) N/A 83 na
Lymphocyte % (24-44) N/A 16 na
Basophil % (0-1) n/a 1 na
Neutrophil % n/a na na
Lymphocyte Absolute Count(1-4.8) n/a 1.18 na
Basophil Absolute Count (0-.1) n/a .07 na
Creatinine Serum (.7-1.3) 1.02 1.17 1.15
Sodium Serum (135-147) 136 136 135
Potassium Serum (3.5-5.0) 4.4 4.5 5.1
Chloride Serum (98-108) 103 102 104
Carbon Dioxide (23-30) 32H 28 25
Blood Urea Nitrogen (8-20) 23H 44 44
Lactate Dehydrogenase (313-618) 935H 749 na
Uric Acid Serum (2.6-7.1) 6.6 6.7 4.6
Phosphorous Serum (2.5-4.5) 3.8 7.4 5.7
Calcium Serum (8.4-10.2) 8.4 7.6 na
Magnesium Serum (1.8-2.9) 2.2 2.6 na
Ionized Calcium (unknown) n/a 1.01 na
Peace of Christ be with you and Bless you forever and ever,
Bonnie
Friday, November 5, 2010
An Extended Stay at MDACC for Friday night, 11/5/10
Joe will be staying another night at MDACC to keep the brakes on tumorlysis from hurting his kidneys thusavoiding dialysis. The med crew is confident that protecting the kidneys will be successful. I wonder how long Joe will be staying here. Our pastor, Caleb, will be flying to Houston tomorrow from Atlanta. His flight will arrive around Noon. I wonder if we will be out of the hospital. We have no idea.
Joe ordered a cheeseburger, french fries, cheesecake and ice tea! A real gourmet meal, huh! I hope he eats it since the meds that cost $5000 a dose requires food in his stomach. It is 5:40pm late Friday afternoon. The nurse will bring me a copy of his latest blood results before she goes off shift at 7PM. Tonight I may stay in the studio apartment. It all depends on how Joe is doing.
I called Pastor Caleb and advised him to call us when he landed since we are not sure where we will be. Hopefully, we will be back in the studio apartment. God willing. He said that he was looking forward to seeing us and giving us a hug. I told him I could sure use a huge hug after the last 48 hours.
The Blood tests were completed to check only certain aspects of the blood that affects the kidneys to control the effect of tumorlysis. Here is a partial list showing the normal range and what it was on other dates
11/1 Monday (no chemo) checked in
11/2 and 11/3 two days of MethoTREXate
11/4 one day of Cytrabine
11/5 Rituzimab started at 1AM stopped at about 9AM
11/1 11/3 11/4 11/5AM 11/5PM
Creatinine Serum (.7-1.3) 1.02 .97 .90 1.09 1.17
Sodium Serum (135-147) 136 139 135 137 136
Potassium Serum (3.5-5.0) 4.4 4.2 4.3 5.3H 4.5
Chloride Serum (98-108) 103 100 100 101 102
Carbon Dioxide (23-30) 32H 33H 27 25 28
Blood Urea Nitrogen (8-20) 23H 21H 27H 40H 44H
Lactate Dehydrogenase (313-618) 935H 731H n/a 770H 749H
Uric Acid Serum (2.6-7.1) 6.6 n/a 7.6H 10.6H 6.7
Phosphorous Serum (2.5-4.5) 3.8 4.9H 5.4H 6.5H 7.4H
Calcium Serum (8.4-10.2) 8.4 8.0L n/a 8.1L 7.6L
Magnesium Serum (1.8-2.9) 2.2 2.2 2.2 2.0 2.6
Ionized Calcium (unknown) n/a n/a n/a n/a 1.01L
I am about ready to leave for the evening and get a decent meal on the way back to the studio apartment where I will spend the night. My phone will be right next to the bed in case Joe needs me.
A good night for solitary prayer and thankfulness.
Ciao!
Bonnie
Joe ordered a cheeseburger, french fries, cheesecake and ice tea! A real gourmet meal, huh! I hope he eats it since the meds that cost $5000 a dose requires food in his stomach. It is 5:40pm late Friday afternoon. The nurse will bring me a copy of his latest blood results before she goes off shift at 7PM. Tonight I may stay in the studio apartment. It all depends on how Joe is doing.
I called Pastor Caleb and advised him to call us when he landed since we are not sure where we will be. Hopefully, we will be back in the studio apartment. God willing. He said that he was looking forward to seeing us and giving us a hug. I told him I could sure use a huge hug after the last 48 hours.
The Blood tests were completed to check only certain aspects of the blood that affects the kidneys to control the effect of tumorlysis. Here is a partial list showing the normal range and what it was on other dates
11/1 Monday (no chemo) checked in
11/2 and 11/3 two days of MethoTREXate
11/4 one day of Cytrabine
11/5 Rituzimab started at 1AM stopped at about 9AM
11/1 11/3 11/4 11/5AM 11/5PM
Creatinine Serum (.7-1.3) 1.02 .97 .90 1.09 1.17
Sodium Serum (135-147) 136 139 135 137 136
Potassium Serum (3.5-5.0) 4.4 4.2 4.3 5.3H 4.5
Chloride Serum (98-108) 103 100 100 101 102
Carbon Dioxide (23-30) 32H 33H 27 25 28
Blood Urea Nitrogen (8-20) 23H 21H 27H 40H 44H
Lactate Dehydrogenase (313-618) 935H 731H n/a 770H 749H
Uric Acid Serum (2.6-7.1) 6.6 n/a 7.6H 10.6H 6.7
Phosphorous Serum (2.5-4.5) 3.8 4.9H 5.4H 6.5H 7.4H
Calcium Serum (8.4-10.2) 8.4 8.0L n/a 8.1L 7.6L
Magnesium Serum (1.8-2.9) 2.2 2.2 2.2 2.0 2.6
Ionized Calcium (unknown) n/a n/a n/a n/a 1.01L
I am about ready to leave for the evening and get a decent meal on the way back to the studio apartment where I will spend the night. My phone will be right next to the bed in case Joe needs me.
A good night for solitary prayer and thankfulness.
Ciao!
Bonnie
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